Dancing To The Rythm Of A Ticking Clock

Happy Birthday - (guest blogger - Micki)

2012-01-31T23:09:00.000-05:00

Happy Birthday Rachel, my best friend and little sister. A birthday tribute party was held last Saturday night complete with cake, appletinis, 80s music, naughty limericks, goody bags and great friends. Tonight I picked up Iris and Vera, and met Mom, Spence, Eva, Mary & Don, Amy & Wesley and Jason for dinner at Western Sizzlin. We enjoyed sweet tea, Texas toast, sirloin tips, country fried steak, baked potatoes with cheese and hot wings and brussel sprouts from the salad bar (all your favs).

missing you.

~Micki, the big sis.

Rachel's 35th birthday party, January 2011

Thank you (Guest blogger - Micki)

2012-01-24T20:49:00.000-05:00

I know it's been a while since I've posted and I told several people that I would keep updating Rachel's blog (I will continue to post). It's not possible to put into words how I feel now, without my best friend and sister. Getting back into the work routine was difficult, Rachel was part of my day. When I had a few free moments I would call and check on her or she would text me something funny or ask if I was going to visit her. The weekends as well are not the same, we would call each other if a stupid movie was on, that is, if we weren't together watching one or taking Iris and Vera somewhere or just sitting and talking. Actually, nothing is the same.

THANK YOU

My post tonight was to thank everyone for their kind words and generous acts during Rachel's battle and beyond. From Facebook friends and loyal readers of her blog to family and close friends and even strangers; people writing letters & cards and encouraging thoughts to Rachel, bringing food, donating to Rachel's charities, driving hours, flying across the states, sending care packages, presents for Iris & Vera, bake sales, organizing suppers, creating awareness about Lynch Syndrome, collecting money, organizing fundraisers, donating airline miles, lighting a candle, saying a prayer, sitting with her and holding her hand. Rachel was always so overwhelmed by the kindness of people, during this process I know how it feels to being on the receiving end of such generosity. Thank you again - our families appreciate your thoughtfulness.

Micki

for my Sister (guest blogger - Micki)

2011-12-28T22:09:00.000-05:00

Sleep My Sister

I wish you sweet sleep, my sister dear.
Although there's so much that you've left bare
I hate that you had to endure such pain
On my mind, your saddened eyes have left a stain.

I want to know what crossed your mind
Unspoken words you've left behind
Undone things we'll never do
No sharing thoughts you never knew.

A peace has fallen upon your head
A taste of sorrow we have been fed
It really is like a hole in our lives
One swiftly dug but carved out by knives.

But I have hope that those sleeping will rise
The Bible says that God will open their eyes.
No suffering, sickness, yes not even pain,
Those who did good, eternal life they'll gain.

So... sleep on my sister, sleep tight
For now with you the sky is night.
But after night will come daybreak
Therefore I will wait hoping to see you awake.

Service & Travel information (guest blogger - Micki George)

2011-12-12T13:52:00.000-05:00

Following is information for friends and family that will be attending the services:

For those flying in from out of state:

MOV Regional airport in Parkersburg, WV has numerous direct flights from Cleveland via the Continental carrier. Several flights throughout the week and on the weekend. The flight schedule for MOV Regional airport can be found here: http://www.flymov.com/flight.html

Two other airports are located a bit outside our area in Charleston, WV and Columbus, OH. If travelling to these airports you will need to make additional travel plans to commute into the area for the viewing and services.

Viewing:

The viewing will be held at Leavitt funeral home, Friday, December 16, located at 801 Victor Street Belpre, OH. Hours for visitation will be 2-4pm and 6-8pm.

Service:

Funeral Services will be held on Saturday, December 17, 2011 at 1:00 PM at the Porterfield Baptist Church with Pastor Matt Morrison officiating. Graveside memorial services will be held at a later date. Porterfield Baptist Church is located at 39 Hollywood Drive, Little Hocking, OH.

Hotels:

Several hotels are available in the Parkersburg and Marietta area, all which are a short distance from Belpre and Little Hocking where the viewing and services will be held.

1. Comfort Inn Parkersburg: Rooms are available at $105.00 per night. This hotel is very near to many restaurants and the Parkersburg mall. They offer a free hot continental breakfast (per their website), free wifi, and an indoor heated pool. (Address = 401 37th St, Parkersburg, WV)

2. Blennerhassett Hotel: Rooms are available here from $139-169 per night. A historic hotel in downtown Parkersburg with very beautiful rooms.

(Address = 320 Market Street Parkersburg, WV 26101)

3. Hampton Inn (Marietta): Rooms available at $109 a night. Offers a fre hot continental breakfast (per their website) and free wifi. (Address = 508 Pike Street, Marietta, Ohio)

In lieu of flowers, the Rachel requests donations be made in her memory to:

Lynch Syndrome International
PO Box 5456
Vacaville, CA 95688
http://www.lynchcancers.com

Inheritance of Hope
P.O Box 90
Pisgah Forest, NC 28768
http://inheritanceofhope.org/

Online condolences may be sent to the family at www.LeavittFuneralHome.com.

Obituary - (guest blogger - Micki George)

2011-12-12T11:45:00.000-05:00

Rachel George Greenwalt, 35, passed away on December 10th at her home, surrounded by her family, after a long and courageous battle with Appendix cancer.

She was born January 31, 1976 in Marietta, Ohio to Robert George of Coolville and Erma Nolan Rutter of Marietta.

Rachel lived and died in her own way and was admired by many for her fighting spirit, generous nature and sense of humor. She enjoyed time with her daughters & family, making her famous salsa and blogging. Rachel was a graduate of Belpre High School and earned a degree in Mass Media from Washington State Community College. She proudly served in the United States Navy from 1994-98 as an F-18 plane captain stationed at Naval Air Station Fallon, Nevada and as Yeoman to the Command Master Chief with HM-15 at Corpus Christi, Texas. Rachel’s chosen career was her dream job, morning radio personality on WNUS, entertaining the Mid-Ohio Valley with her quick wit and spunky personality. Rachel was a certified lactation counselor, rescued two greyhounds, raised money for the American Cancer Society and created awareness about Lynch Syndrome. As a self proclaimed, “Jane of all trades, master of none”, Rachel’s most beloved role in life was that of Mother.

Rachel is preceded in death by her grandparents, Jim and June Nolan of Belpre; grandfather, Lawrence George of Coolville and her aunt, Lucy George Bennett of Lowell.

She is survived by her two beautiful daughters Iris, aged 5 and Vera aged 3; her husband, Jason Greenwalt; her parents, Robert George and Erma & Spence Rutter; her sisters, Michele George and Eva Rutter; her brothers, Corey, Luke & Sean Rutter; her grandmother, Josephine George; several aunts & uncles and cousins.

In lieu of flowers, the Rachel requests donations be made in her memory to:

Lynch Syndrome International
PO Box 5456
Vacaville, CA 95688
http://www.lynchcancers.com

Inheritance of Hope
P.O Box 90
Pisgah Forest, NC 28768
http://inheritanceofhope.org/

Local donations can be made in person to Rachel George Greenwalt account at Riverview Credit Union, 403 Main St. Belpre, Ohio.

End of a Journey - (Guest blogger - Micki George)

2011-12-12T08:48:00.000-05:00

It is with a heavy heart that I write this post.

Rachel ended her long, courageous battle with cancer on Saturday afternoon, December 10th surrounded by her loving family.

No more hospitals (guest blogger - Micki George)

2011-12-07T16:41:00.000-05:00

Rachel left Camden Clark Memorial Hospital (CCMH) to return home on Monday, December 5th. She was admitted to the hospital on Monday, November 28th after experiencing a seizure at home. Rachel was receiving medications to prevent any further seizures during her stay at CCMH. She also received hospice services and transferred to a "serenity room" to provide comfort and privacy.

Rachel is now receiving hospice care in the comfort of her home. Her wishes are to be home, where she can be with her girls and be surrounded by their happy giggles and hugs & kisses.

She is being cared for around the clock, never a second is she alone. Mom and I have been reading facebook posts and cards to her, letting her know how many people are thinking and praying for her.

Rachel has been fighting since May 2009 and her courage has touched so many family members and friends (new & old). Her long journey is nearly over. Rachel is resting, her pain is under control. She will not be going back to any hospital.

~Micki

back tracking (guest blogger - Micki)

2011-12-04T00:16:00.001-05:00

I wanted to talk about some events from November.

Sky lantern launch

November 18th, Friday night at Belpre boat ramp behind Hardees was a sky lantern launch to show support for Rachel. The event only involved 3 days notice due to weather (winds must be less than 6 mph). We had planned on launching 50 lanterns (each one takes 2 people to launch). On the 18th at 6:45 pm family and friends began arriving. There was plenty of help to unwrap the lanterns and direct supporters to write messages of love and hope on their lanterns. WTAP was there filming for the nightly news and WNUS sent a van with speakers to play music. The event was beautiful, more than 50 lanterns were launched and the unofficial participant count was at least 100 supporters. Rachel was amazed at the showing of support when she saw the 11 o'clock news and home video.

Visit from an old friend

November 21st, Monday, Rachel's dear friend, Jamie, arrived from Austin, Texas for a visit and stayed until Wednesday. He brought Rachel a special knitted pumpkin hat and Iris & Vera cowboy hats. Rachel and Jamie enjoyed each others company, snuggling and laughing about their time together in Texas. Jamie was given the title of honorary "Uncle Jamie" to Iris and Vera. Jamie's travel schedule allowed him to make a another short visit back to Belpre on Monday, November 28th before returning to Texas on November 29th. He spent his last night in the hospital with family, while Rachel was being treated for complications from her cancer. It was easy to see why Rachel held Jamie in such high regard as a friend, he was so devoted to her during his short stay and now I would consider him part of the family.

This picture was taken on November 22, 2011.

Treatment in Texas Early November, Rachel was accepted for a clinical trial at Mary Crowley Cancer Research Center after returning home from UPMC (Pittsburgh) for placement of liver stents (10/27/11). Plans were made for her to fly with Dad to Dallas for treatment. After several phone calls with nurses, it was discovered that Rachel had already received the drug used in this trial. The trip was canceled.

*more posts soon.

Thanks again for all the messages of support.

Micki

Thanksgiving update (guest blogger - Micki)

2011-11-30T01:17:00.000-05:00

Rachel wanted everyone to know that she had an enjoyable Thanksgiving weekend even with a short visit to the hospital. Wednesday, November 23rd, Rachel was admitted through the ER at Marietta Memorial Hospital (MMH) as a result of a fungal element in her bloodstream, she also had a bacteria infection that needed treatment. While at MMH, she received a blood transfusion. Rachel returned home Thanksgiving afternoon for some overdue rest. A belated Thanksgiving dinner was held at Rachel's house on Saturday, November 26th. She joined a crowded kitchen & living room full of family for a traditional feast. The girls, Iris and Vera, were excited to watch the lighted night parade in Belpre with their cousins.

Time for Giving Thanks (guest blogger - Micki)

2011-11-23T22:32:00.000-05:00

Micki here writing on behalf of Rachel. This is a short post, I will write more later about the sky lantern launch, visitors and the trip to Texas. I just wanted to say "Thank you" to all Rachel's supporters and cheerleaders! She is very thankful to have so many family and friends showing that they care and love her.

~This picture was taken Thursday, November 17th, 2011.

little things are not so little (Guest blogger - Micki)

2011-11-03T08:59:00.001-04:00

Micki here - Thank you for sending the emails to Rachel, she appreciates them and is overwhelmed by her supporters (often from people she has never met).
Yesterday, Wednesday November 2nd, Rachel had a busy day with several visitors. Her favorite visitor is the person that brings Tea from McDonald's (half sweet/half unsweet), it happened to be Dad. Mom and I were there all day looking at pictures and organizing. Rachel spoke about future plans, some unpleasant topics that need no further elaboration.
Dad picked up Iris from school to take her to dance class. Iris was a little grumpy which made it challenging to get her dressed. I finally got her in pink tights and black leotard and had given up on brushing her hair. Rachel was on the couch armed with hair brush and detangler. Iris stood still and Rachel, with a mother's love, brushed out a school day's worth of tangles and put her shiny blonde hair in a pony tail fit for a dancer.
Uncle Don had dropped off some delicious home cooked food earlier in the day and returned later with Aunt Mary for a short visit.

I left in the evening with Rachel resting, catching up on some sleep before Iris and Vera returned from church when they would inevitably be waking her up with hug & kisses.

The big sister - Micki

*This is one of Rachel's favorite pictures with Vera - taken in the emergency room in September before she went to UPMC Pittsburgh.

For my lil' sister (Guest Blogger - Micki)

2011-10-29T11:55:00.002-04:00

Hello, Micki here (the big sister). I am guest blogging for Rachel. Since her last post she has had several doctor’s appointments and short stay at UPMC Montefiore (Pittsburgh) under the care of Dr. Zeh and Dr. Slivka. She decided not to continue with the clinical trials in Canton with Dr. Gabrial.

The evening of Monday, October 24th she was admitted through the emergency room at UPMC.

On Wednesday, October 26^th she had 2 stents placed in her liver to drain toxins. Rachel returned home to her beautiful daughters on Thursday, October 27. She is receiving home nursing care so that she can stay at home and avoid future emergency room visits. Rachel was visited by the hospice nurse but decided against receiving their services so she would still have the option of TPN (IV nutrition). Her pain is being controlled by a pain pump and she is on oxygen to help her breathe.

On Friday, October 28, 2011, she recorded herself reading a Disney Princess book for the girls, enjoyed some Kentucky Fried Chicken with mashed potatoes & gravy and green beans and spent the day with Mom, Vera, Misty and me hanging out.

I will continue to provide updates on her blog and on Facebook.

Continue to pray, send good vibs and positive energy her way.

Please feel free to share your stories and pictures about Rachel, how you met her or an adventure you had her, either here or on Facebook.

If you want to send her a private message you can email me at michele.lee.george@gmail.com and I will read them to her or send a card to her home address 803 4^th St Belpre OH 45714.

The big sister,

Micki

If Only...

2011-09-17T03:04:00.000-04:00

What if?.... If I'd have just... Things might be different if....

I wish those phrases weren't even speakable.
So, people- I have neglected you. But hopefully you understand that instead of blogging, I chose to sleep.
Where to start, where to start?
Well since last we met I was on a clinical trial in Canton, feeling like crap, on Home Health (a step away from Hospice) and pretty miserable.
A relief to the misery- My friend, Nancy, came out to visit for Labor Day weekend. I haven't seen her since last year at the reunion. Nancy and I met inthe Navy, waaaaaaaaaaaaaay back in 1995. Wow, can't believe it's been that long. I still consider her one of my best friends even though we go for sometimes weeks without a phone call. We know the friendship is there. Just like when Karen came out to visit, I didn't feel great, I slept a lot and we didn't get out and about except for a trip to the mall on a rainy Labor Day. My husband kinda gave me hell about it... that I didn't give her the grand tour of the Mid-Ohio Valley but Nancy understood. She came out to visit with me- not to go sightseeing. We just wanted the chance to be in each other's company- whether it was on my back porch, on the couch, in the car or at the mall. I miss her already. My Dad took her to the airport when it was time for her to go because I was feeling awful and because I knew I couldn't do 'goodbye.'

Nausea is a bitch. It's the reason-well the MAIN reason- for my ridiculous weight loss. I'd been fighting it forever it seemed. Go back and have a lookie-loo at my posts, and there it is. Over and over again. My hair has been falling out. It's' prettty thin and so am I.
A little over a week ago I was feeling especially nauseous. It felt like there was something stuck in my guts that didn't know which way it wanted to go. I tolerated it for as long as I could and just decided to head once again to the ER. They're getting to know me there and I don't like that one friggin' bit.
After some X-rays the docs come back to tell me there may be an obstruction and probably a perforation. Time to move to a bigger hospital for treatment. Well, if you've read this blog for a while- you'd know there was NO WAY I was going to Ohio State University Medical Center for treatment because that would put me right in the hands of Dr. Arnold again since he's the head of gastro-intestinal oncology there. No thank you. I thought of Cleveland Clinic and told them I wanted to go there- but then I thought of University of Pittsburgh Medical Center where they have a special division dedicated to PMP and told them that's where I wanted to go. My first instincts haven't been kind to me so the fact that I passed on Cleveland Clinic is okay with me. I know I'll hear about how great Cleveland Clinic is- and I am well aware. I am not anti-C.C. - I just made a choice. I was in the ER for 15 hours- UPMC was full and trying to get me a room... once I got a room, it was the waiting game for a ride there. Thankfully my nurse was pushy and got a ride even though it pissed off her higher-ups. We've written a thank you letter.
When I finally got to UPMC they ran tests and yadda, yadda, yadda... "Let's wait it out because you've got a lot of tumor and we couldn't get to your obstruction and perforation even if we wanted to." So bowel rest it is. This is on Friday. No food... just occasional ice chips. There really isn't anything to do about it. You know- I don't know what I think or thought anyone could do about it except a colostomy- but I'm told there might not even be enough bowel to do one and there is just a LOT of tumor. Regardless- I was happy with the doctors and staff. Monday I was EXTREMELY irritated. I wasn't getting answers and I don't know why, but the docs didn't perscribe the amount of Ativan I have been using. Look- so what if it's addictive? it's anti-anxiety. Can I HAVE THAT? Can you just give me the mental rest that I need? Once that was squared away, All was MUCH better.
I talked to the palliative care people... yes, yes, I know who they are. It comes down to wants and wishes. Let's just be real, you know?

I'm on IV nutrition now. Here's the kicker- I FEEL BETTER. I'm no longer on the clinical trial in Canton- no Erbitux which could hinder surgery if I actually HAD surgery. Am I making the right choice? Who knows? If only (there's that phrase) I'd have gone to UPMC on the 13th of May, 2009, things MIGHT be different.
I can't live with that constantly eating at me. But it does pop up every so often.
I'm still here. I don't know how much longer. There are times I feel the clock winding down and there are days I feel like there isn't a damn thing wrong with me.
Regardless- I am taking care of "things" if you know what I mean. That doesn't mean I'm admitting defeat- because as long as people around me believe there is something just around the next corner, I have to keep going.

How do I do it?
There are 2 answers to that question- and they are sleeping soundly in their beds right now.

Who Beats Cancer? (Guest Blog Post - Rachel's Friend Cindy)

2011-09-09T20:00:00.000-04:00

Who beats cancer? Who are the people that you see on TV who talk about how they defied the odds and slayed the monster that is cancer?

There is an article on Triathlon Competitor online that describes how John Klish, a 30-year-old deaf triathlete and engineer beat his cancer. He attributes his success at the hard work he's put in ever since he was young. Deaf Triathlete Beats Cancer

We can't forget about Lance Armstrong either. He says that he "never felt like he was dying". Might that be what made him a success story? Lance Armstrong TC

My maternal grandfather fought it and lost - but then again he'd lived a life full of hard work, success, sadness, children, grandchildren and even great-grandchildren. My maternal grandmother fought the cancer monster too and lost the battle less than a year after her husband (my grandfather) passed.

I don't want to leave anyone feeling depressed, though. My friend's toddler son had a devastating form of cancer. While he fought for his life in a hospital bed, the doctors pulled Dana into a conference room to tell her that her son was going to die. Ironically, it was at that moment that she knew that her son wouldn't die from cancer. She told me that it was like God spoke to her and told her that her son would. He battled his cancer for 6 years and beat it.

So I guess the question is now how we define beating cancer, but when we define beating cancer. Maybe all of our friends and family who are afflicted by the awful disease beat it every day that they continue to grace us with their presence. Maybe that is how we should measure fighters like Rachel - as winners who are victorious already.

Or maybe the only person who can measure Rachel's success is Rachel herself. But in my book, she is victor already.

Cindy Rios-Myers
http://www.cindyrios.blogspot.com/

Shortness.

2011-08-24T01:16:00.001-04:00

It's been fairly quiet the last week or so. I had chemo on Thursday last week. I have to go early to get the festivities started so I'm not there until 6pm like last time. They start pushing the meds a little faster and your body doesn't know whether to sweat, sleep, cry, run away or what. It's a discomfort that I can't even describe. I LOATHE it. And the pills I'm supposed to be taking as part of the trial make me want to throw up just looking at them.
I'm trying to get organized because I don't want to leave behind a mess for the girls because there's so much I want to make sure GETS left behind. Gotta pic and choose. Since I'm just leaving a big tote full of stuff of 'me'. Cards for each of their birthdays up to 20 or 25. Then wedding cards, graduation cards. I'm working on a journal of just feelings and what happened each day. My sister will have to dedicate a nice portion of her house to "Rachel Stuff".
I've said it before- and I'll say it again... If you have cancer you should get a personal assistant. Some of the information out there is wrong, and some is just ignorant. No one knows when it's time to see a specialist, so they can' make the right decisions. Plus Someone needs to be the asshole and demand the real answers- the patient shouldn't have to play the bitch role.

That aside- Iris started Kindy for real on Monday. She loves it- all happy faces when she comes home. The only problem... she wants to ride the bus. I wouldn't care except logistically it doesn't jive so she's gonna have to suck it up. She may ride on occasion since I am no longer allowed to drive. Yeahhh. So I have to depend on someone who can go "Right Now". So someone at my beck and call.
Then in 2 weeks- Vera heads to Preschool 2 days a week- 9:30am-1:30pm. I don't know if that makes me feel guilty or feel better that I'm not just shoving the girls off to my mother-in-laws while I sleep.
I really can't get enough sleep. I just can't. But I'm going to start dividing up some REAL times to be with them- quality- and quantity. Mommy guilt is the worst kind. No one is harder on you about your kids than YOU are right? I'm going to try reading this book "The Council Of Dads." And possibly get that rolling. Then there is a thumbprint necklace that I want to get for each them. And I HAVE to get those 2 lullabies recorded for them. Even if it IS just me ~~talking~~ singing into my microphone on my phone.

My friend, Karen came in for the past weekend to visis just a couple of days. She was here last Thanksgiving if you met her. It was wonderful to see her. She rushed to get the ticket because she's afraid I'm on my way out. Hey- nothing wrong with being honest. I do look like death, but I'm working on it and I'm sure it's hard for people to see me at all. Ick.
Karen waited on me- beck and call. We didn't do much but talk and I'm glad. I'd have rather done that than go out clubbin' or whatever. She hugged me goodbye like it's the last time she would see me. I guess it's possible. I think like that sometimes- but not always. You can swim in that self pity until your fingers get all pruny, it doesn't do any good. Don't get me wrong- I've been known to do that, but something snaps me out of it. I count on it.

For everyone who sent cards and flowers- thank you a million times over. Each act in itself is a pick-me-up. Thank you, Thank you, Thank you.

If you want to know about me and my physical being- I'm still sick and I think I find another cancer nodule on my torso every other day. Some days I'm good to go- and could take on the world- other days I just need to sleep until it isn't possible to sleep anymore, I feel nauseous, can't eat, am sore all over for no reason and so on, and so on. But I think the days are close to even.

And I don't know what to think about the next plan of action. I don't have one. Maybe the ovarian chemo. Rally I'm just waiting on that vaccine to work.

Okay everyone- hug your babies- even if they are sticky.

Best,

Here's The Update

2011-08-19T01:56:00.000-04:00

I don't feel strungout, drugged out, flat, shakey, hurt-y or any of that stuff so I will attempt to blog like I promised.
Since last we talked, I didn't know what was next. Continuing on with what's available? I moved from Hopsice because you can't be on hospice and treatment at the same time. Home Health is for that dealio. I'm still on a pain pump and I am sure someone has told me that would be a good idea before? Well, go on with the "I Told You So's".

I don't need a fraction of the pills I was carrying around in my ever-growing purse. BUT now I have to carry around a hip bag... or du, dun, dun FANNY PACK-24/7.
But you know, for the pain it relieves, I'm on board. I also can't drive :(
My friend Stephanie organized a 'card shower and I haven't seen that many cards in...... ever. thank you to EVERYONE who sent cards. it means a ton that I've evidently touched that many people with just another cancer- and a simple, whiny blog.

I had chemo today and it was started to get brutal towards the end. Cold sweats hot sweats and by that point you gotta go to the bathroom every 5 minutes. I was never happier than to just get the hell out of there.

Tomorrow is Iris' first day of kindergarten- Indoc day then the real thing on Monday. So I MUST get some rest.

Gonna try to do more updates form here out, though they may be shorter.
So goodnight everyone. Thank you for the food, the cards, the prayers, the visits and thebest wishes.

What Seemed To Be The Downward Spiral.

2011-08-11T02:04:00.001-04:00

How do you know when it's the end? Is it a gut feeling?

Last Monday, I had a round of Erbitux and the trial drug. I feit 'fine' for Monday-... was somewhat easy to get out of bed even Tuesday morning as I took Iris into her first day of Jumpstart at school, but then the day and week just started going downhill. I couldn't catch my breath, I couldn't eat, I couldn't focus. I figured it was just the chemo and that it would eventually wear off.  Only slight improvement with each day
Saturday I thought I felt a little better but still couldn't get out of bed. By 4 in the afternoon, I couldn't take it anymore and told the husband that he would have to take me to the ER. I was waiting for my mother to get there to watch the girls. In the meantime- My sister showed up and called 9-1-1.  I got in the shower while we waited because I didn't want to smell when the potentially hot EMTs showed. It was tough and emotional becasue Iris was inconsoleable and Vera was following suit. I didn't know what to do. It was traumatizing, I couldn't see straight- it took every ounce of me to move my legs one in front of the other I felt like I was knocking on death's door. I think a million things and nothing all at once.
The EMT driver was hauling ass to the hospital and once we got there, poof! My Dad was there and My sister was there.
I got Dilaudid and Ativan and I was good to go.
A stomach/ chest x-ray showed and ileas and that pretty much took care of that.   I  was admitted that night with the hope that they would insert a tube to my stomach for relief and all that jazz.
BUT,
You Guessed it, there's not enough roon to get that done safely, too much tumor. Hmmmm now where have I hear that before? So now I look into other trials. Pittsburgh, Dallas again?! Wherever.

So for now, I am playing out my "I am pissed at the world" Then when I'm done with that, I'm going to go balls out (even though I don't have any) and get every weapon I can get for an arsenal of fight. I WILL make it to 40. That's not too much to ask- besides- I figure prayers should be like a petition... once you reached so much - you should have to stop an take real notice and give it some scrutiny.

Yep.

Guest Blog Post (By an Old Friend of Rachel's)

2011-08-04T13:51:00.000-04:00

Hi Folks!!! My name is Cyndia Rios-Myers but you can all call me Cindy. I am stepping in for Rachel this week to update her blog for her and let me apologize in advance for the length of this entry!!

As all of you know, Rachel is in the fight of her life. She is currently taking a breather after a rough round of chemo in order to recover for a bit before she jumps back in the fight. Actually, even as she is trying to recover some of her strength, she is currently plotting an alternate method of attack against the cancer.

You know, I almost feel bad for the cancer as I would never want to get on Rachel's bad side. I have been in awe of her ever since I met her. It was a cool day of October in 1994 when I first met her. (Actually, I don't remember the weather of the day when I first met her. It was the second or the third day after arriving at Great Lakes Naval Training Center for boot camp; I was too damned frazzled and shell-shocked to know what was going on.) The people who organized the groups of recruits that would comprise separate companies had us all sit down at tables in a huge conference room. I was a scared little seventeen year old who looked at the red-rope wearing Petty Officers with a mixture of fear and admiration. Sitting at my table was a jaded and unimpressed looking girl wearing the same Navy blue sweats that I was. She actually looked kind of bored which stood out to me as the rest of the booters like me seemed to be freaked out. Breaking the silence was a Petty Officer who went to the podium and spoke over a microphone to get everyones attention. The Petty Officer alerted us that we had arrived at the "Time of Truth". Apparently, it was our last chance to be able to come forth with any crime or trouble we had gotten into that we had not divulged to our recruiter or had not come up during whatever cursory investigation they do to potential Navy recruits at MEPS. Immediately, I freaked out. I was sure that there was something in my background that the Navy would find out about me (it didn't matter that no such thing existed). A recruit then asked the girl with the bored look if she had anything to report. She laughed a bit and said that she had done some stuff but that no, she would not report it. She said that she was sure that no Navy Petty Officer was going to go to her town in bumfrack Ohio to find out what she did. I was in shock and awe. We got grouped up into the same company - Company 903. Seaman Recruit George got along with everyone as everyone liked her. Even our Company Commander liked her. The next time Seaman Recruit George impressed me was in the gas chamber. She was one of two recruits whom the gas chamber had no affect on. She laughed at the Damage Control Petty Officers when they kept her after everyone else left the atrocious room. I stood outside the gas chamber, drooling like a basset hound while tears and glow-in-the-dark green snot dripped off my face when George came out of the Gas Chamber with a smile on her face. Her and the Damage Control Petty Officers were really tight then.

I lost contact with Rachel after Boot Camp as I was a Seaman who went to Florida and she was an Airman that went...somewhere kind of boring, I think. I found her again on a military reunion website back in 2008. We caught up on old times and I marvelled at how beautiful her first daughter was. I bragged about my son too and it was almost like old times with the only difference being that I could relate to her better then as we had very similar lives. Then, my husband (who is a Sailor) got orders to California in 2009 which is where we are now. The day that Rachel updated her Facebook status with her diagnosis of cancer floored me. I still remember the updates she made while she was at the hospital.

I am still so proud to be Rachel's friend. I don't know when (if ever) I'll see her face-to-face again, but I still count her as one of the people who has known me through some of the huge milestones of my life. I check her updates on Facebook and I read her blog. I am Catholic and I pray for her at Mass every Sunday. When we pray the rosary every night, I name her too.

What I know is that Rachel George-Greenwalt, a.k.a. Seaman Recruit George, is as tough as they come. She is a calculating fighter who knows how to identify the strengths and weaknesses of her opponents which is what she is doing right now. Stay tuned, folks. Rachel's got so much in store for everyone.

You can follow my blog at http://www.cindyrios.blogspot.com/ if you are bored and have nothing better to do.

Now For The Next Chapter

2011-07-21T01:16:00.000-04:00

A lot has happened in the last week or so. Honestly, I'm so cloudy that I have to reference my last post to remember what the heck I was talking about.
Now that I've done it, it's kind of a relief that I do remember snapping out of the funk. I even remember the moment- it was during a cheesy song in a yogurt commercial. Hm. Whatever it takes.
Thing is, the outlook is really no different than it was then so I don't know why I would feel any better mentally from one minute to the next but there ya go. So one minute I feel like I'm drowning 2 feet from the shore, the next I think- well hell, bring the shit that's next.
I have gradually gotten a bit of energy back each day. Saturday was FULL, I took the girls to a local festival... The Sweet Corn Festival. I'll give you a guess what it centered around. It's really geared to little kids. I picked up my younger sister, Eva to help me wrangle the girls because I just can't do it on my own. Too hot, and they have SO much energy.

Eva was a huge help, I couldn't have done it without her there. I got a little irked at a woman who sat across from us at the tables with her tween daughters while we had our sweet corn... she asks me if those are my kids- I said "These two are." pointing at Iris and Vera (I specified because Eva is almost 21 years younger than me and could easily be my kid). She giggled and said "Oh, I thought you were just sitting for them since they weren't listening to you very well."
Ummm, WTF? I didn't really know what to say. I was hurting and yeah, the girls were squirming and whining and not listening (it was naptime) and maybe I looked a little disconnected and struggling, but why would you feel the need to say that?
Thank you for pointing out that I am an insuffecient Mother. My girls will grow up to be true heathens. I'll go cry in my lemonade shake-up now.
Then a few minutes later she walked by me and put her hand on my shoulder and said something to the effect of "I wish you the best."
I don't even know how to take that. I couldn't figure out from the tone of her voice if she was being smart-assy or sincere. And I don't know which would piss me off more.
Uggggh. Shrug it off, shrug it off. People say stupid shit every day. Unprovoked. Without knowing the full story.
I'm sure I've been guilty of it too.

After teh festival we went straight to my husband's cousin's kid's birthday party (you still with me?). It was a mini-golf party for the little kids. I was sore but I wanted to be there.
We got home kinda early and my sister came over to help me put the girls in bed since the husband was at his brother's cookout.

Needless to say, I was pretty worthless on Sunday.

Monday Mom drove me to Canton once again for the next chapter/battle in the whole cancer mess. I started a clinincal trial and a new chemo. Dr. Gabrail (the new oncologist) did the KRAS testing that I thought was done in September and got a different result. So I guess I'm KRAS-Wild type. Which supposedly is a good thing because it could be potentially vulnerable to other drugs. So, yay I guess.
I did the chemo and the pills for the trial and Mom drove me home. I will be doing the chemo every other Monday "until it doesn't work anymore."
And then Dr. Gabrail said we will try the ovarian chemo.

In the meantime, I'm getting another port put in on this upcoming Monday. Can't say I'm excited but what's another scar? And someone will be with me for this one just in case you wondered.

I think we're gonna try to get to the Columbus Zoo on Saturday since it seems the Summer is almost over and I all but swore that I was going to take the girls. Plus, I can rent a Hover-round and roll, Rock-Star Style. My Sister, Micki and my Mom will probably be going with.. girls' day out. The husband will probably stay back to take care of my Dad's properties... they need mowed and someone's gotta do it.
So here's to hoping it isn't too hot because the animals never come out when it is.

I'll try to update more often- maybe from the hotel before the surgery or while I'm not doing a thing.... that happens a lot.

On To The Next "Hope"

2011-07-13T03:09:00.000-04:00

I start a new clinical trial on Monday. This one is a pill and a double-blind study. So I may not even GET the drug.
Let's not kid ourselves here. I don't like the phrase "Giving up" because I'm certainly not doing that. I'm waiting to hear back from the herbalist/guru and I am doing all that I can. I HAVE BEEN doing all that I can. I feel like I'm sliding down a cliff, grasping on to little roots and plants sticking out- tearing up my hands trying to hang on to rock ledges that are just enough for my fingers to grab. Yeah, you can hang there for a minute- but it's inevitable, you're going to keep slipping and falling until you have a REAL ledge to stand on.
I can't get enough sleep. The girls get up in the morning and I referee from the bedroom. Some GREAT memories they'll have of me, huh?
Luckily, they are at my mother in law's tonight, I am hoping that when I get up in the morning- I'll have SOMETHING that resembles energy. Maybe I need someone to come to my house and tell me to get the hell out of bed and get out of the house. But even when I'm out, I am sleepy. I can fall asleep in the waiting room... oh, and I talk in my sleep... no really. I can close my eyes for about 2 minutes and talk in my sleep to my dream. I even catch myself reaching for the stuff that might be handed to me in the dream.

I now have 2 lumps in my left breast and I'm finding little lumps all over. That- paired with the weight loss and general discomfort and lack of good news suggests the worst. So how the hell do I stay positive?

I have plans with the girls this month. I'm trying people, I'm trying.

Somebody tell me something good. And don't say "You have your kids" because at this point, that is the only thing keeping me sane. I need to hear something I don't know. I figure you'll come up empty handed.

Gotta Get Better Than This

2011-07-10T23:10:00.000-04:00

I've been pretty much doing nothing since I last updated- there wasn't much to tell so I didn't want to bore you with "wahhhh."
Tomorrow I go to Canton- somewhere in Canton. I have to find it. They were supposed to send me information via e-mail but nothing. eh, we'll see.
My Mom is going with me so no worries about me going by myself.
This trial is evident a double-blind study where you're given on drug for sure and maybe the other drug with it. I haven't had either so fingers crossed that it will produce something good. I'm running out of happy juice. I believe the people around me are running out too if they haven't run out already. There has got to be a point where good news is genuine. Something promising, anything.
When my husband, who NEVER gets into deep talks, brings up the idea of me planning my funeral (for real) I know that the people around me are worried. He said he thinks that if something doesn't change soon that he doesn't see me around much longer. I honestly think the same thing too- I just don't say it out loud. I know it's upsetting to talk about and even to avoid. Some do a great job of not showing it- others, not so much. But it's come to the point where I now know that everyone is scared for me. Last time I weighed in at a Doctor's office, I was 138lbs. I haven't seen the 130's since I was 19.
And when you drop almost 60lbs this fast and don't have muscles and a flat belly and a Bowflex in your living room to show for it, it must be worrysome. I look awful. My legs are skinny, my neck is waddly and my eyes are dark. I finally look like a cancer patient I guess. Not that I wanted to be here- but that's it.
With spots in my lungs and a lump in my breast- there's too much evidence that I'm losing. I've looked up Peritoneal Carcinomatosis, signet ring cell adenocarcinoma, PMP and other stuff- it suggests this cancer RARELY moves out of the abdomen. But mine did. Go fucking figure. I beat the odds in all the wrong ways. How about beating the shitty odds given me about 5 year survival? Why can't I be THAT kind of statistic?

Well, here's to another Hope. And to hoping that this vaccine decides to start working ASAP.

Was That Necessary?

2011-07-03T00:11:00.001-04:00

As I think of the BIG scheme of things- no. Getting a tumor removed from my chest wasn’t necessary and neither were the little tumors on my arms. But Na-na-na, Boo-boo stick your head in Doo-Doo I got them removed and I feel mentally much better.
Dr. Kuhn worked me in on Thursday. He saw the tumor and said it had to go because he could see how miserable it would make someone. He’s so great. I’d travel to Texas for any surgery as long as he was doing it. I don’t know that I trust any other surgeon. I mean- Sardi would be a close second then I would let the doctor at Tufts in Boston (and I don’t even know him- I just got a good vibe from him.
I will NEVER let Dr. Arnold touch me again. I don’t even want to SEE him again because I feel like I should have something ready Maybe just make him look at my wrecked, disgusting body and tell him that he started it all. And a lot of the mess ups were from not knowing that my cancer was Appendix and not knowing is was Peritoneal Carcinomatosis until a year later. That’s a HUGE problem. If you don’t get a correct diagnosis- how are you supposed to get the right treatment?
Grrr. Anyway- After the surgery I was HURTING!!! I guess the pain is starting to get to me. And they had the fluids going so fast that I had to pee every 30 minutes... and I couldn’t get out of bed yet so I had to wait for the nurse to get there with the bedpan.
The last time I called for a nurse- she took too long so I had to get out of bed and get to the bathroom. Every part of that was a chore. But I made it... just in time.
The nurses were great- lots of personality and didn’t mind me asking them over and over for the bedpan or for meds or for them to tuck the pillow in my back so I could sleep. So, kudos to them. Good Surgeon and Good Nursing Staff.
Somehow on the flight home the next day I ended up in first class. With a window seat even. Nice. Mom and my little brother came to get me since I drove myself to the airport. I slept most of the way home and got a sweet greeting from Iris when I got home. I love hugs. I love m girls and they are the reason I do all of this. I know I’ve said it many times, but I’ll say it again... I couldn’t go through all of this if I didn’t have them to live for. It certainly doesn’t mean I will win in the end, but I fight harder.

My friend, Kristi, lost her battle with pancreatic cancer today. I just found out via Facebook. She had 2 young children- Michael, 4 and Julianna, 2 and a great husband, Mike. My husband and I had an almost instant bond with them at the Inheritance of Hope Retreat at Disney in January. Our stories were similar and Jason and Mike really bonded... I think it’s tough for guys to address their feelings unless they find someone who’s almost in their shoes- and Jason and Mike seemed to be wearing the same pair.
I hate this disease. Not just for me, but for all the other warriors, family of warriors and anyone who cares about someone who’s fought it.
It’s hard to find a silver lining tonight. I wish I could do it but I am just not in the mood. I will squeeze my babies a little tighter, knowing there are 2 more babies out there who don’t have a Mommy to squeeze now.

As Expected

2011-06-29T22:05:00.000-04:00

No. Not good news. C'Mon people- haven't you gotten the routine by now? I DO NOT GET GOOD NEWS. Today was no different. CT scans show metastasis to omentum, the surface of my liver, lymph nodes in my arm and neck and spots in lungs and breast.

Not in critical state though. So, Yay? Nothing I have done has shrunk anything. I am still holding onto the sliver of hope that the vaccine will work. I've tried to be mentally 100% behind it but it either hasn't kicked in yet, IS working-slightly- and if I hadn't had the vaccines, these tumors would be ten times worse, OR it won't work.
Alot of the tumors have grown. Some by 2 to 3 centimeters.

The growing tumor on my sternum is becoming painful and making it hard to even wear a bra, so I met with Dr. Kuhn about removing the tumor there- I have surgery tomorrow. I'd say he worked me in pretty fast. I was supposed to be on my way back home as I'm typing this but I'd rather just have this surgery done and overwith. It's an outpatient deal but I'm spending the night at the hospital tomorrow night then flying home on Friday.
Let's be honest- this surgery is not even close to curative. It will only make me more comfortable. So it's not like the surgery is a big deal. Just another go under the knife for me.

Lots to do when I get home. I'm just going to have to schedule my days: What to eat, what to take, when to meditate and all that. Really. I've got to get serious about these less than serious "cures" if only to say I gave EVERYTHING a go before I went.

You know- I had a break from cancer when I went to Italy... but it wasn't long enough. I'm already sick of this shit.

A Thinking Problem

2011-06-29T01:05:00.000-04:00

Just one day I would like to hear GREAT news as far as cancer is concerned. So far- it's all been either horrible or "Not bad" if you look at it a certain way.
I had My CT scans today. The catch... I was scheduled to go in at 9am to drink the contrast and CT at 10. I had to call and push it back because I was feeling awful. Then it was drink at 2, CT at 3. Well, I was in my hotel room, throwing up at 2. They gave me IV fluids and anti-nausea meds so I could get the CTs. Evidently the morphine I'm on is slowing my GI system down to the point where.. well.. things won't move. Well, then I can't eat anything when it's go nowhere to go, so it comes back up.

I've also been thinking a lot about mortality. The tumor on my chest is growing, I have little knots on my arms and stomach... I thought it was fat, but it's very possible they're tumors. And it would be my luck that they are and will gro like the one on my sternum, making me look like the friggin' Elephant Man.
The reason for the thoughts... a fellow cancer fighter, a friend I made at teh Disney retreat with Inheritance Of Hope, is in her final days. She was diagnosed with pancreatic cancer in September. She has 2 children very close to my girls' ages. She and I got along great and her husband and Jason really bonded. I can't express how much I hate cancer. Right now I'm on a little ativan because I'm spending the evening THINKING. There is too much in my head. And it's not happy. I'm really mad at the world tonight. I guess it's a good thing I'm alone because I'd keep whoever was here with me awake, talking their ear off and probably blubbering like a baby.

It hasn't been a good day really. At least the day is ending watching "The Golden Girls."

Back to Life- Back To Reality

2011-06-22T09:37:00.000-04:00

Well- though I left out a few days of the trip (it got crazy busy and I was losing steam. Only had enough for the day, once we got back to the hotel, it was lights out!
Micki and I got home safe and sound. I've been trying to catch up on sleep but I want to be with my girls as much as possible and you know they won't let me out of their sight for too long. I kind of have a renewed sense of Motherhood... trying to be more patient, trying to think of fun stuff to do the rest of the summer.
I wasn't sure if I could hang as a stay at home Mom before, but I think I've got it. I actually think I have more energy when I DO have energy than I did before I left.. and we did A LOT of walking.
And the girls seem to have grown up a bunch in 10 days.
I like it.

So on the cancer front... back to Dallas on Monday. CT scans on Tuesday and seeing the doc on Wednesday. I'm very nervous about the CT scan results- my sternum tumor seems much bigger (that or I've lost weight around it) and you can actually start seeing it through my shirts. It's bad enough to have cancer, but to be disfigured by it is another thing. I know compared to losing a leg, a breast, an eye or something like that is worse, but this is what I've got to deal with and I don't like it. It's gross and it hurts. I'm sure that anyone who hugs me hard enough can feel it... if my boobs were what they once were- you'd never know about the tumor, but they're almost nada compared to the glory they used to be. (If I do say so myself.) Oh well, that's what push up bras were made for I guess.
So I won't be getting a vaccine this time- it's the first follow up and I won't go back for another 3 months. In the meantime, I will be checking into a couple of clinical trials in Canton, OH and one near Cincinnati. Maybe others... I think there might be one or two in Virginia. I'll know more next week. I got a little rusty on the "Save your own life" mechanics while I was on vacation. I didn't forget about the cancer for a day but I certainly didn't have to give a damn at the time.

I'm happy to be home. I'm more than thrilled to be back with my girls. And I guess I'll jump back into cancer fighting with both feet now that I'm here.

Naples... You Can Keep It.

2011-06-14T19:52:00.001-04:00

Today has been an adventure.

It started innocently enough- breakfast at the hotel, lemon trees (note the SIZE of the lemons), singing birds, cappucino...

It was relaxing...

I love that you can't go wrong with a cappucino here.

We stopped at Herculaneum on the way. It's only a fraction of Pompeii, but much better preserved.

LOTS of well-preserved frescos...

Some statues....

And the skeletons of what looks to be a family of 3 huddled together in an otherwise unassuming house.

:(

It's not like when you go in there's a sign that says "There's a really sad display of skeletons in here." You just walk in like any other house in the town. I don't care who you are- it makes you a little sad to see that.
We spent about 2 hours there and then got on our way. We meant to get to the Navy base there so we could mail some stuff home for more room in our luggage so we could shop a little in Rome. Well, after a stop at the Exchange and asking around- we found the post office- tucked away behind some buildings. We walked in and were told that it closed at 3. Huh? the POST OFFICE on a Navy base overseas, on a Tuesday, closes at 3. And of course it was 3:30. Ugh. We didn't know what we would do with our stuff. Find a FedEx in town? Stop back at the base tomorrow? Just hang onto it until we get home? While we were trying to figure this out- we thought we'd either find our hotel or the train station to drop off the rental car. The two were close together.

Fast forward an hour or two and we're 'parked' on the side of a 'street' I think it was under the train station. We had found our hotel amongst the crazy-ass drivers, cars parked 2 deep and piles of trash. After we'd located the hotel- we thought maybe we'd drop off the car, but we couldn't find where the Hertz point was and frankly- the train station was scary as hell.

This is at the train station.

I've been alone and lost in the back woods of Kentucky and I've been alone and lost in the Ghetto of Oakland, California and I've been lost in Tijuana, Mexico- alone and drunk- but Naples scared the crap out of me. Not driving around in a car with my sister, but the idea of the two of us in a questionable hotel, on a main street, at night, just didn't seem like the brightest idea.

No thank you. Naples was a trashy city and Micki and I made the decision to find the quickest route out of there.

We got out of the city and thought we'd head for Rome tonight but we didn't have hotel reservations anywhere and it was at least 2 hours away. Hm- So we headed back to the Navy base and got a room at the Navy Lodge. Some familiarity and security was relieving after that debacle.
Though the food on base isn't authentic Napoli... we got pizza at the base pizzeria (it was that or Subway sandwiches) and hunkered down. It was a good decision because we did laundry free of charge (we each only brought a carry-on of clothes for the 10-day stay) and we can mail out our stuff tomorrow.
I am a little sad that I won't get to see the pretty stuff in Naples, but NOT having to deal with that filthy town is a fine trade-off with me. Small sacrifices........

That's Vesuvius in the distance. This is the prettiest picture I could get of Naples.... LEAVING.

Tomorrow will be a more productive day. I won't say 'better' because 85% of the fun is the surprises. I think Micki and I make a damn good team. She was driving (I think that was a good thing) and I was navigating.. with an inferior map that only had a couple of streets actually labeled- though I don't think it mattered because the streets in Naples are hardly marked. So the fact that we found what we were looking for- train station and hotel- and still got out of there is an accomplishment. We just didn't have to stay once we got there.
I think we will mosey tomorrow. Get the car dropped off just outside Rome, take the train in, get our goodies to the hotel, have some dinner and wine, then on Thursday we'll hit the Colosseum.

Still a ~~good~~ GREAT day. We all need a little excitement- and Micki and I got our fair share.

Ciao!

Pomp-Yay!

2011-06-13T11:43:00.001-04:00

At the Theater in Pompeii.

On the Grand Canal, Venice. I look like crud because this is right after the flight and on the way to the hotel. Note the smile anyway. :)

This is me in St Mark's Square, Florence. You can't see my yummy gelato.

Just got back form Pompeii. Wow. What an experience. A LOT of walking- and me sitting. But My sister is patient and there were a lot of ledges and steps and whatnot to sit on.
I THINK we saw most everything there. We didn't have a guide so we winged it. We found the bathouse (teehee) and the alley was packed with people from cruise ships on group tours. So the groups were taking turns going into the bathouse I guess, but since WE weren't with a group and there is just the 2 of us and there is just a little in and out why should we have to waith for the big ass groups to go? Well some lady practically clotheslined me to keep me from going past her. She said "Our group is next."
"We're not with any group." I said.
She just moved her considerable self into my way and stood there.
I fumed for quite a bit. Were the 2 of us supposed to wait until all the cruise ship groups went through before we could see it? Bullshit. I didn't see in any rules that was how things were supposed to go. I mean, there's graffiti on these aincient frescos, cigarrette butts in the aincient gardens and this beeyotch is worried about 2 girls getting in before her HUGE group? Whatev!
I fumed after it was done and was mad that I didn't say something more to her. I DID get a little revenge... after we got past her group we walked down one of the roads and as she emerged onto the same road she was turning to go the other way but turned in our direction to get a picture of the road.... she got her picture and me in it, flipping her the bird.

Juvenile, but satisfying.

So the hotel where we are staying is nice. The town- not so much. Though when we got here last night we were hungry and figured room service would be fine. I got spaghetti and Micki got linguini with seafood.
This was the WORST spaghetti I've ever tasted-undercooked, and just blech. And Micki's food was beyond gross- we may be ruined on seafood for the rest of the visit. Is it possible to have totally nasty food in Italy? I guess so! Everything up to that point was great... food wise. I DID manage to get a N.A.S.T.Y. drink that I figured woul be deee-lish. Poo- water with carbonation. Sucks to take a risk sometimes. heh,heh.
The drive down here was fun. Got to see lots of countryside, Tuscany and such. Beautiful. The fuel stops were crazy though. Crowded and RUDE people... I didn't take my time looking for nummys- just grab a Coke and go.

I got to Skype with the girls Saturday AND Sunday so i am a happy girl. And thank you Bernie for reminding me that though I miss my girls- I'm making fantastic memories with my sister. I am cherishing my time with her.

I Love My Sister.

So it's nap time right now then the Volcano museum this evening.

Bonjourno

2011-06-11T17:03:00.000-04:00

It is night 2 in Florence for us. We got here last night with a little time to check out the area.
We stood in line for a good hour to see the David. The statue- very impressive. Though it may be a good thing that he wasn't alive when it was sculpted... Poor guy, he would have to tell everyone that it was cold in the room where he was modeling.
I am having a good time- though I still don't forget my woes. It sucks that I'm in ITALY and I can't enjoy a dinner. I threw up last night after dinner and today, right after seeing David, I rushed all over trying to find a bathroom- to find one JUST in time to puke out my nose and into a sink in the bathroom. Then once again on the way back to the hotel right on the sidewalk.
We got back to the room and I crashed for a while. By the time I got enough rest and got my bearings- It was 8'Oclock. So Micki and I found a nice restaurant and had a nice meal. I don't eat very much so I don't regret it later. Dinner has stayed down for now. We did have wine. Chianti is supposed to be the best here so I had some and YUM! I likey!

Well- there is much more to tell, but I'm waiting on the husband to get it together on the Skype so I can see my babies!

We're off to Pompeii tomorrow- driving down the coast. I can't wait for the madness........

Ciao!

Off To Italy

2011-06-08T15:58:00.000-04:00

It is Wednesday and I am writing this from the airport. Patiently waiting to board the flight to JFK Airport and then to Italy.
My sister and I are flying into Venice and are planning on seeing most of the country... Florence, Naples, Pisa, Pompei, Rome... I know there is more than that- but we've got 10 days, so we'll do our best.
I'm excited! I dropped off the girls this morning and got a little misty-eyed... Iris was fine and Vera didn't even notice, she was too busy playing kitchen. I kinda prefer it that way. I'd be a blubbering mess if they started crying when I left- it's MUCH harder that way.
That will be the hardest part of this trip... missing the girls. I'm watching a couple of twin girls here in the airport bounce around, spill stuff and goof off and I'm already missing them.
I will have fun- but I can't put my whole heart into the trip because half my heart is home with the girls. I'm just lucky to have recent pictures of them to bring with me. <3

Checking off my bucket list whether I need to or not.

Last Shot....

2011-05-31T15:03:00.000-04:00

Sounds so final doesn't it? Not like- "This is my last shot at life!!" heh heh... Just my last vaccine shot.
It still hurt like a bitch. Waah. But now I'm looking into other stuff that evidently hasn't been tried and is very promising.

See, here I was- thinking that there wasn't anything after this and voila! New stuff always around the corner.

I guess there is something called CPT-11 and Erbitux... stuff I can get closer to home. Then there is some sort of yeast stuff I might start on that's supposed to attack the hell out of the cancer too. the other stuff is to shrink the tumor and the Doc sounded positive about it. By the way- I got Cindy- the one I LIKE- today. And YES- it does make a difference. She looked at my swollen lymph node on my neck... the one on my arm at the bendy part... see how clinical I am? Aaaaaannnd the coup de grâce of grody bumps= my sternum lump. It's gotten bigger and grosser. I need a name for it. A name that I can rejoice in getting rid of- any suggestions for my "Sternum Lump" name? Bring it.
The girls want to see it and touch it. I want to cut it off. You can't see it really well, but if you're looking for it, you, too can be disgusted just like me. Nom. I will NOT be posting pictures… though I did take pictures of it. I have no idea why. It’s not something I’d be excited about someone finding on my phone if I lost it.

Speaking of losing stuff. .. I have been losing crap left and right. I forgot to get my cash back from the self checkout machine at the grocery store. When I realized it- I went to the customer service counter- no one turned in any money. Nice. Now I’ve misplaced my ATM card. I know it’s at home, but where- I have NO idea. No one has been charging anything crazy on my account. I just don’t have my card. I don’t want a new one because that means re-doing all my accounts on Paypal and Amazon. Grrr.

All right... I think the nurses want me outta here. I will leave as soon as I get my information. I'm ready for a siesta. And maybe some cheesecake. Or some sort of Texas dessert. Though I think Texas dessert is brisket... or at least something meaty.

I'm up for it.

Later all. Happy, shrinking thoughts everyone.

Gotta Get With It

2011-05-30T23:59:00.000-04:00

Wow- time flies when you don't even know it.
Actually it's been an interesting so-many days. Lots of running but I don't even feel like I've gotten anything done. All the stuff on my dining room table is the same stuff that's been there for the last month or so. yep. Papers and markers and a ton of random stuff. Throw in the mail, bills, coupons and you've got the picture complete. I DID get Vera's room and Iris' room cleaned... mostly. And I've got a trash bag and an industrial bin full of clothes to get rid of. Gonna have to crack the whip on myself to get my room totally overhauled.
The husband and I had another really good fight- about recognition and other stuff. He now says- after all is said and done- "You're not going to blog or Facebook about this are you?" Of course not. Saying we fight like any normal couple does is not blogging about the fight... it's just saying it happened, I'm not going into details. I DO think he needs to go to counseling. As do I. both of us for different reasons.

I'm in Dallas right now. My sister came with me this time. I love her. She's my best friend. But boy do we have our own arguments. She got a car and I asked her if I could drive because I know my way around pretty well here and didn't feel like giving directions or listening to the GPS. She is a little irked because she wanted to drive to give me a break. See the delimma? It's just one thing and then another. She worries about me a lot. I worry about her.
She's never been down here with me so she will be seeing the hospital for the first time. I will probably meet with the doctor I saw last time. I'd rather see the same nurse practitioner I'd been seeing since February. She seemed more receptive and nicer than the lady I'm seeing now. Of course since it's my last shot- I will probably be seeing a few more folks. eh- okay.
After this last shot I can start other stuff. Stuff I can take part in at home or closer to home at least. Not that distance matters... it's just a little perk.

Well, I will update tomorrow night with any info I've got. There might not be much to tell. Next CT scan isn't until the end of June.

Post Relay

2011-05-20T00:15:00.000-04:00

I knew I wouldn't get another chance to update for a while after Relay For Life. I was beyond exhausted all day Saturday, had Jasson take the girls to my Mom's and sister's houses for the night.
Well, to recap- Friday night was a whirlwind of crazy- here, there, here, there. I feel bad that I didn't get any real quality time with anyone on the team because there were just too many people there to be able to make a minute at all. We painted faces, sold VERY few raffle tickets. That was a huge bummer for me- last year it was the biggest moneymaker and this year, well, sucked.
We DID win 3rd place for Best Cancer Control Message. I thought we'd do better at that because no one had anything about Lynch Syndrome- and LOTS of people had never heard of it. I guess the bigger picture is that we got the word out to more people about it and they took pamphlets to educate themselves.
We also had printed letters and envelopes to Gov Kasich (sp?) asking him to make the last Wednesday in March "Lynch Syndrome Heriditary Cancers Awareness Day." We had quite a few people take those. All they had to do was sign the letter, put their return address and a stamp on the envelope and mail it out. So we will call it a success. Even though I didn't get to karaoke at all... the karaoke guy didn't come because he thought it would rain. What ev.

So here are some pictures for you to have a lookie-loo.

We raised around $1,900 total. That's below that $2,500 mark we were aiming for but it's still a start. Bigger and better next year I say. Now we know what we're doing.... and I'll leave my sister in charge. That seems to be a formula for success.

Tomorrow night is Iris' preschool graduation. It will be short and sweet and I don't think I'll cry. I want to be there for stuff but I am happy to be moving.. it seems fast but as long as I can be part of it and she remembers it, hooray! She's excited to go to Kindergarten- I'm excited for her and for me. Mommy of a kindergartener.

Saturday night the girls (grown up girls) and I are heading out for a theme night of sorts. We got together and fabbed it up for dinner and to see "Sex and the City 2" and went to Red Lobster then to see Pirhana 3-D when it came out. Well- I was looking for another opportunity to do something theme-y... so the movie "Bride's Maids" is out. It came out last weekend and that would have been ideal but we were busy with Relay and recovery. So Saturday we are meeting at Olive Garden and heading to the movie. The catch- we will all be dressed in hideous bride's maids dresses. Full Monty- Bad hair, Bad accessories, bad dresses. I can't wait. I've got my dress but unfortunately I don't remember how to do my hair supre-ridiculous. I may hit up the local beauty school and let them go to town.
Here's the dress.. it cost me all of $10. Worth it.

I hope to have some good ones for you the next time I post.
I just hope to catch up on some sleep so I can go out without any dragging.

I hope you all are doing well!

Excuses and Thanks

2011-05-13T14:32:00.001-04:00

I've been stupid busy this last week and some- I have less time to blog at home than I do at work. Then when I actually tried to blog- Blogger was down.
So here I am.
Today is Friday the 13th and it is day one of the local Relay for Life. My team is 'Sorelle di Lotta' which is supposed to mean 'Fighting Sisters' in Italian but we haven't actually confirmed that. No one has told us otherwise and it's been a year so we're rolling with it.
Lots to do- it's insane and I kind of like it. It would be lots easier if I was (or is it "I were" ??) an organized person... but sadly, I'm far from it. My house is near certified disaster area and I'm crossing my fingers that I have a day or 50 to work on it and possibly get organized since I'll only have "I have 2 young children" and "I have cancer" as excuses instead of the "And I work full time" added to that.
Hm.... my house was cleaner when I was working- how the hell did I do that?

Eh, anyway- I also wanted to send out a HUGE "THANK YOU" to my friend- Navy Buddy- Michelle. Michelle captained "Team Rachel" at the Relay for Life in Monterey, California. I haven't seen her since 1999 when I still lived in Corpus Christi, TX. I was floored to find out that she named the team in my honor and just got a chance to see the pictures from the event last night. I couldn't stop crying. It was so moving to know that though we haven't seen each other in forever, she still thought of me. Here are pics of the team shirts...

Wow, right? I am still processing it. So, thank you Michelle- and all who teamed with you and gave. You're all awesome.

Well, Lots in the works as of right now. Nothing official but I will probably be on another trial as soon as I get the last vaccine. Onward, always, right? There are a couple of things to try and I will try them.

Aaaand- I'm off after a quick shower and grabbing all the stuff I need for Relay. I will surely forget something. And don't call me Shirley.
I will try (no promises) to post an update with pics tomorrow, recapping the Relay goings on.
Lata everyone!

Scans and Round 4

2011-05-04T13:36:00.000-04:00

Let's just say I knew it wouldn't be GREAT news. So I will start with a little perspective:
The tumors in my abdomen doubled in size in a month (between December and January)= Not good.
January was the last time I had CT scans.
12 weeks ago I had my first vaccine- They said it may take 8-12 weeks to start working (maybe longer). And that the body has to have time to build the immune system. So with time, the vaccine could progressively get stronger.
All that being said, CT scan news isn't "good."
The tumors have grown 16% since January. Yes, them growing at all sucks on toast. But they didn't double in size, they didn't triple... it's been 3 months and only 16%. So let's say the vaccine has slowed down the growth?
Let's say that. And let's say that after this 12 week point- the vaccine will be working at it's full potential, meaning it will be shrinking the hell out of the tumors.
I have another shot at the end of May, no scans. Then scans at the end of June. We'll see what comes of it.
In the meantime- My immune system will be getting boosts from being happy and with my girls- and a trip to Italy in June.
Plus, since I will have the time- I will be juicing a lot more and I will be meeting with the hippie doctor to see what kind of nasty concoctions I can drink or eat or whatever to help my immune system.

There are other trials I am elegible for and I will be doing those too- as soon as I get my last shot.
I'll have the details on those trials when I get more information about them.

In the meantime- I'm ready to start bashing heads to get it to the medical community that appendix cancer IS NOT colon cancer. The sooner they get that through their thick as hell skulls, the better. And I'm sure the more lives they can start saving.
Irritating.

So, let's focus on the marginal news and the hope of good news in the future instead of the 16%.

More later folks.
Thank you for the continued prayers.

End Of An Era

2011-04-25T11:49:00.000-04:00

Had a great Easter with the family. Though I was too tired to go to services I kinda felt like I should have went... you know?
We had family over for an egg hunt with the kids. LOTS of eggs. Ugh- probably too many, but we were counting on 2 more kids to hunt. Oh well, the girls were happy- and little cousin Wesley was happy too.
It was nice to have everyone over, I think that's the most people I've had over at one time. ?
Today is the first day of my last week at work.
I've decided to go on Social Security Disability. There are a number of factors that led to the decision. Some were no-brainers but I do love my job. I've been here for just shy of 10 years. Longer than anywhere else. I get a little misty-eyed thinking about it. I hate that I HAVE to even make that decision. But I've gone a bit downhill (well, I have) for the last couple of months. I'm more tired than usual, I'm sick at work, I've lost a bit of humor, I'm just this side of worthless really. So I have to relent and call it. It's not fair to everyone else around me to pick up the slack. I've never liked being a load. I suspect that this will give the jerk/loudmouth/a-hole at work ample ammunition to badmouth me some more like he did when I was diagnosed: "I guess this gives her more reason to be lazy." he said. Or something like it. I think he was just jealous that HE couldn't be the one with any sort of excuse. He doesn't have one but he sucks anyway.
Ugh- No, that stuff doesn't roll of my back. It actually cuts pretty deep, or I wouldn't even mention it.
Anyway- Friday is my last day at work. I got into radio to be on a morning show. I got there after 4 years in. I thought that was a pretty good advancement. So now I have to give it up. it wasn't really fair to the station and the people working to have to sit on edge to know that at some point they would have to find a replacement and possibly be hated for it. If I up and died while still working, what's the protocol for finding my replacement? Do they bring someone in immediately? Do they wait X months? Do they leave it open forever? Eh- Now they can do what they NEED to do. I hate doing it, but bowing out is about the only respectable thing I can do. Dammit.

The end of an era.

I know what you're all thinking- But you'll have so much time for the girls, for your health, for whatever you WANT to do.
~ Of Course I Will. That doesn't mean I didn't want to work. I LIKE my job. It's as much part of who I am as my Navy time was, as much as being a mom, as much as bieng mascot in high school, as much as playing basketball, playing drums in the marching band, being in ballet, being in Girl Scouts, being in 4-H, growing up in Coolville.
Some people get jobs to make money and that's it. Good on them. I chose my career because I wanted to do something that I WANTED to do. I knew there wouldn't be any money in it, but I figured that if I was doing something I loved, I wouldn't be miserable.
So here I am.
I got what I wanted. And now- I have to give it up. And the fear of being forgotten is kicking my ass again.

I've also noticed that I can't get a friggin' 'funny' checkmark on any of my posts anymore... maybe because I'm just not funny. Or maybe it's because the last few months have sucked. Well, in comparison. I mean, not that things have been fantastic since May of '09, but my ability to reframe is being clouded a bit.
I will work on it. Because, dammit, I'm not going out like that.

Get On With It

2011-04-20T23:44:00.001-04:00

I figure at this rate, I should be at my target weight in 2 months or so.
The incredible shrinking woman. Hey- I'm not bitching at all- I hate being fat and loathed the idea that people would remember me with a a pudgy face and just chunky.
But my stomach isn't shrinking. So I still look fat in the middle.
I got my iron infusion today. I wish it gave me crazy energy like it should, but it doesn't. I'm sure it keeps me from being totally lethargic though.
As for the vaccine- I don't know what's going on. Maybe the tumor isn't growing but it just looks like it because I've lost weight. Or maybe it's grown.
I can't eat much at this point- I'm nauseous all the time. I hurt and I'm tired.
I'm trying to figure all this out and it's only speculation.
The vaccine has GOT TO work. I've got nowhere else to go after this- except maybe a colostomy? Eh, whatever. It's been almost 5 months since I've had surgery... I'm starting to go into DTs.

Did I Invent A New Word?

2011-04-16T22:43:00.000-04:00

Cancerexic- Losing weight from cancer issues.

I've been looking for a word to describe my shrinking (but not toned in any way) self.

So I use the word with my tongue in my cheek... sort of. I think it needs it's own word. Hell, people use the term 'Manorexic,' 'Tanorexic' and so on.
My contribution to Webster's.

What Next?

2011-04-13T22:59:00.001-04:00

I am getting anxious about going back to Dallas next month.
I'm afraid the vaccine won't work in time to make a difference. I may just be paranoid but my abdomen feels harder and I feel... weird. I feel cloudy and kinda out of it at times. And there are times when I should be wide awake but I can't keep my eyes open. I had guests over last night and I felt like a jerk because if I sat down for more than 3 minutes my eyes wanted to close and I was going cross-eyed when they were open. I wasn't sleepy.
I was at work and for a minute or two I closed my eyes and actually had a dream... or was it an hallucination? I've even caught myself reaching for something that someone "in the dream" was handing me. This in the middle of the day.

Has the cancer made it to my brain? Am I over-tired? Is it the drugs I'm on? Who the hell knows?

So, maybe an MRI is next on my list of medical procedures I need done? Haven't had one of those, so- check- I MUST HAVE IT.
I still feel fat. I don't really look it from the front, but the side view- ick. My stomach fat is gross and isn't going anywhere. Where's the compassionate doctor who does tummy tucks? Tummy tucks for cancer patients... I think I'll start my own walk.

I've met with the doctor since the last paragraph. Seemed like a split second to you, huh?
I told her about all my concerns and she said it is most likely the drugs and the fact that I'm "working a lot." I use the quotes because I'm hardly an asset at this point.
Moving on... My bloodwork is still good, the lump on my incision scar is grody and getting big and uncomfortable and all that but there's nothing really to do about it at this point.
Of course as soon as I got home I found another lump in my arm that shouldn't be there- gotta wait a while to talk about it. next week I guess. No MRI right now. The doc asked me if I wanted one- I said not right now.
I feel like I'm falling apart. Is it in my head? Because May, 2011 is the 2 year mark? That at one point THAT was my expiration date? Peritoneal Carcinomatosis prognosis from diagnosis= 2 years. And there it is. In my face.
All it takes is one vital organ to shut down.. at any time.

And I worry about Vera wearing bright orange rain boots that are 2 sizes too big for her out in public?

Pardon my French but,
Fuck Cancer.

Aware

2011-04-07T23:51:00.000-04:00

I was on the phone today with the Mercy Medical Airlift people about taking care of my next flight to Dallas.
I had to get a hold of the American Cancer Society for my ID number and such.
They asked me if I had any questions about my cancer or suggestions and so on. Well the last time I asked any questions about appendix cancer, they didn't have any answers so I didn't think they would have any new answers this time. NOT knocking on the ACS by any means really. BUT I did have a suggestion: Educate themselves about appendix cancer. There isn't even an option of appendix cancer on the ACS website. It's THAT thinking that got me in trouble in the first place. Appendix cancer is it's own cancer. Just like breast cancer or lung cancer and so on. You don't treat appendix cancer like colon cancer or you'll likely get nowhere. It's the mentality that it can be treated like colon cancer that kills appendix cancer patients. If I'd have had the right friggin' diagnosis, things would have been a LOT different. I think patients need to have the right information instead of just lumping it into a bigger category just because it's convenient.
I suggested that the ACS look into appendix cancer information and pass it on through their website.
Plus, I suggested they include more information about Lynch Syndrome.
So I've become an activist.

Hey-Hey, Ho-Ho
Appendix Cancer's Got To Go...

Word.

2011-04-04T18:16:00.000-04:00

As in "No Word." Because I haven't had any scans.
The tumor in my abdomen has not gotten any bigger as far as the Doc can tell. BUT the hernia/tumor/scar tissue just below my sternum has gotten bigger. Not really worrisome but the fact that it might be tumor growing= not good.
Again though, this is the 8 week mark. Let the healing begin dammit. I've more than put in the waiting time, the pain, the anxiety and yadda, yadda, yadda. So let's get this show on the friggin' road.
Scans next month... 29 days.

Round 3

2011-04-04T10:01:00.000-04:00

Today I get shot #3. Also, today is officially the 8 week mark. The doctors said that the shots take 8-12 weeks to start working. Of course, they said that it can take LONGER. Like 18 MONTHS- longer. Let's hope that the vaccine is closer to the 8 week mark for working.
I still don't feel anything "working." A lot of people... well everyone that knows what's going on asks the question "Can you feel anything different?"
My answer is "I don't think anything is growing, but I don't think it's shrinking at this point either."
With Lynch Syndrome- it's hard to tell what this vaccine will do for me. Maybe it will be totally ineffective or maybe (Pollyanna) it will be the big cure for regular cancer AND the secret key to Lynch Syndrome. Eh. I try not to be a pessimist, but I can't repeatedly get my hopes up only to have them dashed again and again. I mean, 15 rounds of chemo for colon cancer and I don't have colon cancer... 2 IPHP surgeries that I didn't need, nor did they have any effect on the cancer. 1 HIPEC surgery attempt that couldn't be completed. The whole experience has been one let-down after another. So it's weird to put all my hope into a little shot in the arm. I'm not getting any other treatment. It's scary.
So we'll see what my blood tests look like and what the docs say today.

I got into Dallas at 9:30 Saturday night- meeting up with my friend Karen- she flew in from Missouri to meet me for my shot and for well, just hanging out for a couple of days. My friend, Jason and his wife (Who I occasionally stay with when I come to Dallas) held a get-together for Fallon Navy people at their house yesterday. I had a great time. I saw a couple that I was stationed with- they got married in Fallon and are still together. My friend Danny and his wife, Dayla were there. And I invited a Navy friend from Corpus Christi who lives in Tyler, TX. I finally got to meet her kids. :)
I guess some other Fallon-ites were a upset cuz they thought it was a reunion that we didn't tell everybody about. So I guess when I come out in June or July we'll do a bigger reunion. I hope airfare comes down.
Well, I must get ready for the appointment- breakfast at IHOP.

What a pain in the

2011-03-30T12:13:00.001-04:00

Ask anyone with cancer how they feel about pain pills. I'd imagine the answer would go something like this... "Yeah, they're great when I need them, but I don't want to be a pill-popper, or dependent on them."
Welcome to my world. I'm hurting- almost all the time now. I've had to have my perscription changed. I feel like a druggie. I'm emotional over this in addition to everything else I have to deal with because I'm torn between "I must be taking too much!" and "I'm hurting so bad that I want to scream!"
I wake up hurting, I put off using my painkillers and lay and whine and writhe in pain. But if the pain is controlled- I can function like a normal person. hm. Sounds like a druggie- right? Judge away.
I called in for a refill on my perscription only to find that I couldn't have a refill for 2 more days. The doc told me that if I was having pain that I could take another dose at 3 hours instead of 4 and that's what I was doing. Hence the quick usage. Hearing THAT made me feel even worse.
I will get a new perscription today and hopefully the pharmacy I use won't feel it necessary to judge me. I feel bad enough already, dammit.

Sometimes There Are Things Even I Don't Talk About... BUT

2011-03-22T09:35:00.001-04:00

Cancer wrecks a lot. We already knew that didn't we? It can cause you to rediscover friends, to make new friends, it can also cause some friends to turn tail and run far away from you. Collateral damage is not unheard of.

What about those who can't leave? Your parents... Let's get THAT out of the way now... no parent worth ANYTHING would leave a child (no matter how old their child is) after a cancer diagnosis. What about spouses? The deeper this thing goes- it's been 2 years now- the stronger that question becomes.
Should spouses get an 'out' if their husband or wife is diagnosed with cancer? Your first reaction is "NO, Of course not!" but hear me out... What if things were rocky before? What if it's almost making existence MORE miserable to stay together? Cancer isn't like nursing a cold for a week and "Can I get you some soup from a can?" and you're done. NO. It's forever. Once you have cancer- you're forever a survivor. Whether it was a mole removed or a breast or a leg. Cancer is cancer- and it's scary as hell. Watching a loved one go through it SUCKS. It's coming up on a year since my sister's surgery to remove all her cervical cancer and it STILL bothers me to think about it. I can only imagine what goes through the minds of the people that care about me. My entire existence hinged on an experimental vaccine.

I think spouses should get a 'Get out of Jail Free' card to say "I can't handle this... I'm not cut out for it." OR "Our relationship is not strong enough to survive this."
And they shouldn't catch any shit for it. They deserve to be happy just as much as the Survivor does.
I'm wondering if my husband would like a card. He does more around the house than he's ever done in his life. He seems totally miserable and he hides things from me. He seems to distance himself. At times I think life for both of us might be easier apart.
I know my diagnosis has been hard on him and 2 years on, I don't think he has figured out how to cope with it.

No, it's not fair to those of us who HAVE to deal with it- but if friends of mine can turn tail and run, why can't a husband/wife? Cancer sucks and I think if someone wanted to and CAN get away from it they should be allowed to. Cancer shouldn't be able to screw with everybody.

That's my thoughts for the day... and yes, this is the day after a fight with the husband. I don't normally discuss my marriage here because it's been less than stellar and I know some of you personally and I don't like airing the marriage 'dirty laundry' here because it comes off like I'm badmouthing him. Plus, he'd be pissed that I even talked about it. But I know he doesn't read this.
But, this is MY blog. This is MY outlet. This is where I come to talk about what I need to talk about. And I needed to get it off my chest.

Iron Maiden

2011-03-17T23:17:00.005-04:00

I got a text message tonite that told me to update my blog.

As you wish.

I honestly haven't stopped much in the last week-plus to write anything more than a status update.
When I DO stop, I fall asleep. Really.
My iron levels were low before I went to Texas and I was supposed to have an infusion on the 9th, but as soon as I got back from TX, I had a sick baby to take care of. I wonder what will happen to my kids if I die... will they actually make it to the doctor for an illness or will they just have to tough it out? Vera had a nasty cough over the weekend before heading to Dallas and on the Monday I got a call that she was running a fever. Okay... take her to the Doctor. I can't do it right now- obviously. The doc is out on Tuesdays- so instead of going to a quick care dealio, just wait until I get home. *Sarcasm off* Sheesh.
I took her to see her doc on Wednesday afternoon when we could get in. I was exhausted still... she was flat. Hacking, temperature and so on. She had pneumonia. Just a little rattle but still. :( So we stayed in bed the rest of the day. I wasn't good for much- so it helped that Vera didn't want me to leave her side- AT ALL. I was okay with that.
She got over it pretty quick. I had been dragging. Made it through the weekend but getting to work this week was tough. I couldn't really function well. It was like being nacoleptic. I couldn't hold my eyes open just sitting at the computer working. I put my head down and was listening to the radio for my next break and fell in DEEP sleep. Missing breaks and such. People probably think I'm a dirtbag- but it wasn't something I could help. Coffee didn't work... sleep was the only thing that might work and there isn't enough time in the day to get what I felt like I needed.

**Enter the next scheduled iron infusion.**

Thank God.
I was scheduled for iron on Wednesday this week and actually got there for it.
I can handle the waiting room, exam rooms and such- but the smell, feel and atmosphere of the chemo bay makes me want to buuuuhhharrrrf. Literally. I had to ask for anti-nausea meds for my IV because I'd probably have just sat there, wretching. I loathe that chemo bay. Don't get me wrong, the nurses are wonderful, but memories prevail. Come to think of it- looking at my file folder kinda makes me sick too. Just it sitting there... yep. Gross.
Any-hooooooooooooooooo
I got my iron and felt much better by Wednesday evening. I even got to work and stayed awake without problems this morning. Hooray.
I am scheduled for a total of 12 iron infusions. 1 a week. I'm totally okay with it if it makes me feel better. I just wish I could get it in a different room. blech.

Oh- and I thought I'd post a somewhat decent, current pic that I took in Dallas. I flew out Monday morning- got to DFW at 9:30am. Waiting in line to get my rental car I got a text from Iris' preschool teacher that said "This is Iris... I am thinking about you. I love and miss you. xoxoxox." made me wanna cry. So I sent a text, but I thought a picture would be even better. So I took a picture of myself blowing her a kiss.

The picture didn't go through, but I showed it to her when I got back and she was happy about it. So, win for me. I love my tenderhearted little girl.

So those, my friends, are my excuses for the lack of posts in the last week and some.
I apologize all over myself. (One of my favorite quotes from my Grandmother June.)

Texax vs. Appendix cancer- Round 2

2011-03-07T14:08:00.000-05:00

I'm hanging out in the chemo bay at the Mary Crowley Cancer Research Center waiting for the shot. I'm a baby... it hurts. Why can I get a tattoo no prob, but the shot makes me wince?
Yeah- just got it. owie!
Now they do vitals every ten minutes for half an hour and I'm on my merry way.
Getting here this morning was fun- flight to Charlotte, NC was about an hour and I think I did the head bobbin all the way there. Hey, I got up at 2am to leave at 2:45 to get to the airport, checked in, through security and on the plane by 5:25.
Then the 3 hour flight to Dallas from there... in a MIDDLE SEAT!!! argh! Sitting next to a guy who didn't seem to care that his elbow was practically halfway in my seat. So I was a tad uncomfortable... okay a LOT uncomfortable for 3 hours.
I DID get a sweet Ford Escape for the rental. Lipstick Red. It was the best deal for the day. Who knew?
So I am off to the hotel after this to rest up. I may get a chance to skype with my girls... hopefully it works this time. I had a major malfunction last time. Operator error I'm sure.

Oh- so did you want to know if anything was different? What the Docs say and stuff? I bet you doooooooo.....
The tumor in my abdomen seems to have not grown. If it has- it's not a signifigant amount. Hoo. Ray. Yes, I've lost weight, a whopping 6 pounds since I was here last. The doc says that the tumor isn't protruding as much as it was and since I've lost weight, she thinks that it would be MORE noticeable- but it isn't.
Is it the vaccine or dumb luck at this point? "They" say the vaccine won't work for at least 8 weeks. 4 more to go to get to that point. But things are already looking good.

Coming up on Round 2

2011-03-01T09:40:00.000-05:00

Yesterday was a blur. I went to work- left to head to Lancaster for the last of my blood draws (that's about a 90 minute drive) I sat in the waiting room for about 20 minutes before I asked them how much longer it would be since they didn't look like they were doing anything at all. Evidently they "lost" me. Naturally that happens when I was in a hurry because I had to be in Marietta (2 hours from Lancaster) by 2:30pm. It only took a minute though.
So by the time I got to Marietta, they had my bloodwork from Lancaster so I didn't need a draw there too.
The doctor went over my numbers with me. Things look mostly good. My protien levels are good, blood counts are good, blood sugar, liver numbers and stuff= good. My iron is low, but that's going to happen since my body can't absorb it from food like it should. I'll be having an infusion next week when I get back from the 2nd shot. I've lost 10lbs since I was there last time (January 26?). That's really not horrible if you think about it- it was more than a month ago. Plus the Dr explained (especially to my sister) the weight loss to my sister and maybe everybody will get off my case about it now. Even if I lose another 30lbs I won't be crying about it if it's a gradual thing and I am technically healthy. I don't eat the amounts I used to and I don't LOOOOOOVE everything like I used to. Though I still want a friggin' Olive Garden salad.
I'm looking forward to the next shot... and the next and the next and so on. I can still feel this tumor in my abdomen but it's not scaring the shit out of me right now. I was seriously worried that I wouldn't be able to make it the 8 weeks waiting for the vaccine to work. Since it's almost 4 weeks down and I'm doing okay- I can breathe a little easier. Always on alert though.

Feelings... Nothing More Than Feelings...

2011-02-25T11:58:00.001-05:00

Well- Today I feel good. I mean it. I was draggin' a bit this morning, but with the right balance of painkillers and coffee, I'm good to go. :)
I am kind of in a rush to get things organized for my next visit to Dallas... I should have had things done sooner I know, but I am a horrible procrastinator.
I am just now getting around to setting up a "Treatment" account at the credit union. I have people who are donating hotel rooms, plane tickets, airline vouchers and such and I need to get with the American Cancer Society about the 2 tickets they definitely cover (they only guarantee one set of 2 a year) that Jason and I will be using in May for the 3 day visit when I have the CT scans to look for vaccine progress.
It's a full time job to organize all these things and appointments and doctors and arrrggghhh!!!
I think every cancer patient should get a free accountant and secretary. Wouldn't that be nice?
I'll deal with the cancer, but can't someone else do all the legwork for me? har har. I'll just stay right here and sleep.
Okay- More notes of amazement and thanks: My Navy buddy, Jason has taken care of my April plane ticket with a Southwest Airlines free ticket. My other Navy buddy, Danny has taken care of $1,100 of the $2,000 for the March vaccine because of the Fundrazr site he set up on Facebook. My friend Stephanie is talking to a group she knows about covering some sort of expense that goes with treatment. And i just found out today that my April vaccine will be covered by a person who wishes to remain anonymous.
I don't even know what to say.
When I signed up for the vaccine- knowing that it would be $2,000 out of pocket for the vaccine alone, I was going over in my head how many I could actually GET before the money dried up and I would just have to bow out. But thanks to the overwhelming generosity of others, I'm more than halfway there. 3 of 5 vaccines covered.
I'm sure people will get sick of hearing my name before hearing "Can you help?" I want this vaccine to work for a lot of reasons... and that's one. Wearing out my welcome.
I get sick of hearing it too. I want to be on the other side of this debacle so I can be a survivor and in the position to help instead of the one needing help.
For now- I physically feel good. Mentally... Great. Ready to take on the world again.
And it has everything to do with drawing my strength from all the wonderful support I've gotten for so long.
Thank you.

Moving Along

2011-02-22T23:20:00.000-05:00

I've been feeling a bit better the last few days. In my head at least. I still hurt but I think I've leapt over the the tired problem... maybe.
My potassium is low which makes me feel weak, causes cramps and mood issues.
I'm sure the fatigue will only lessen a bit because of how my life is- working early, nap in the afternoon, being a mom to a couple of crazy fun kids. I know I need sleep but I have to push myself through the 'less tired' times to be with my girls.
I'm still occasionally feeling pressure in my lower abdomen from the tumor. I don't know if it's growing, shrinking, staying the same or what. I have an appointment with my oncologist on Monday to go over what they think I need to do. I haven't heard from the surgeon in TX about what his take would be.
If this vaccine works fast enough to keep the tumor from doing any more damage to my insides I'll be happy. I do have faith that it will work. It's just how FAST it works- I hate waiting.
if I get any news to tell- I will pass it along.....

A Better Day

2011-02-18T09:19:00.000-05:00

Maybe it's because it's Friday. Yeah right- I have no concept of "Wahoo- it's the weekend!!!" I'm just happy for each new day. Cheesy? Yeah, I know.
I will be calling the surgeon in Dallas today to see if he wants to remove the tumor. I am at peace with the idea of a colostomy bag if it means less pain and more time.
I feel considerably better than I have the last few days. I am still weak and I am still tired- but I am not hurting like I was. It's not even a hurt that I can describe. It's just pain. And like my friend Jenny said last night- being in constant pain can bring you down quicker than anything else. It's like having some jerk in your face telling you every waking minute that you're going to die. After so long- you start believing it- and you can either let it take you down or fight it.
I can tell you that it gets harder and harder to fight it with every failed treatment. With every meaningless round of chemo. With every unsuccessful surgery. With every recovery that I can't hold my kids. With every look in the mirror.
I have lost weight. I think around 20lbs. Now, I can't pinpoint the real reason. There are a lot of factors: I am making better choices when I'm eating. I cut out pop- my true weakness. I don't eat as much as I used to. Then there's the cancer.
All contributing I guess. It scares me a little, but I don't think I look sick... it's just dropping weight a little quicker than the average person I guess. I've heard that I look good with the weight off... rather than concern that I've lost weight you know? So when I hear close friends expressing concern over my looks I'll really worry. I NEEDED to lose weight anyway. I'm sure that there's a huge chance of diabetes just around the corner so let's try to NOT go there. I don't need that TOO.
Don't get me wrong- by the books I'm still overweight so no worries about being underweight. I guess I get to go out for a new wardrobe though. My pants are falling off. Or I'll just invest in suspenders. Uh- no.

Anyway- Fear not. I have emerged from my funk yet again.

It would stand to reason...

2011-02-16T09:38:00.000-05:00

..That being in a community of cancer patients that you're going to hear of too many who lose their battles. I am sad that I was not aware until THIS MORNING that Kirsten (http://cancersmancer.blogspot.com/) lost her battle with Hodgkins Lymphoma last week. R.I.P. Kirsten. You fought well.
Damn this disease. Damn it for everything it takes from us. I can't even relay to you how much I hate this disease. There are no words strong enough for it.

I had a horrible day yesterday. I woke up in the middle of the night with a racing head. I get up a few times at night now to use the bathroom now because this big ass tumor is pushing on my bladder. Couldn't get back to sleep for an hour and a half. Couldn't wake up in time for work, went in an hour and a half late and couldn't even hold my eyes open when I was at work. I left in the middle of a meeting because I felt like my head was off. It's hard to describe... like I was ready to just shut completely down. Outwardly it looked like I was just tired or drunk or something, but it was a mess. As soon as dismissed myself form the meeting- I started crying hysterically and drove myself home. I am supposed to pick the girls up right after work on Tuesdays and Thursdays because my mother-in-law has 5 kids to take care of on those days (Iris being the oldest of them all). But I wasn't in any condition to go get them. I didn't even want to be on the road alone- I just needed to lay down.
My husband got the girls at around 2 and brought them home. I woke up to get things in order for Iris and to get Vera to take her nap. I went back to sleep. Iris woke me up a couple of times- but I ended up sleeping until 8pm. And could have kept sleeping if things hadn't needed done.

Who sleeps this much? I am sleeping my life away and only hearing my kids laughter in my dreams as they play with their Daddy in the other room.
*EFF* Cancer.

One Week Later~~~~

2011-02-14T09:59:00.002-05:00

I've been truly lazy. I have a computer at home, but didn't feel like going all the way downstairs to update my blog. How's that for lazy?
In my own defense- After the vaccine on Monday, blood draw on Tuesday then flying home, then driving for nearly 3 hours- round trip Wednesday, Thursday and Friday for blood draws- I am tired.
That's news, right? That I'm tired? Are you tired? Of hearing that? Me too.
So from the top... Tuesday I went for the blood draw in Dallas- then headed to Dallas Fort Worth Airport to drop off the rental car and catch my plane. Hm, the flight leaves @ 4:35 but my itenerary says 4:30. Now why can't I check in? Oh- because my plane leaves from Dallas LOVE FIELD... 30 MINUTES AWAY!! Grrrrr!!!!!
I booked the flight and didn't pay any attention. So I had to catch a cab and hope I got there with enough time to catch my plane or be stuck in Dallas for another day.
Luckily all went smoothly after that. Nice "Duh" moment though. I think I'll pay a bit more attention next time.
I got home no problem and my Dad met me at the airport. It took about 5 minutes for me to show him my new tattoo. He doesn't approve of tattoos but this is my 7th so he's not floored by it. Though he did lighten up a bit after I showed him what it was.
Are you wanting to see it?

If you're wondering where it is, it's on my right wrist. I wanted it to be my first real visible tat. That pic was taken about 1 minute after it was finished- so it looks SORE. Cuz it was. :) It's in the ick stage now- healing. Almost done.

Well- I'm sure you're wanting to know about the vaccine and effects and all that. I don't feel any different. I wish I did because I'd constantly think it's working. I had weird cramps for the first couple of days after the injection. The Center said it was common to get that with abdominal cancers after the shot- they don't know why though. Eh- I've had worse. I go back on March 7th. The next shot is covered too, from my Aunt's spaghetti dinner fundraiser and online help from the Fundrazr site my friend Danny set up. I just found out that a little church in rural Southern Ohio gave $500 to the dinner fundraiser. Bethel United Methodist Church- So nice of them. It is a tiny church and I'm sure that is no small chunk of change to them. Thank you to everyone who helped. I am humbled yet again.

Well, I'm headed to Lancaster today for another blood draw. Then next Monday, the next and then I'll be back in Dallas the Monday after that.
I am trying to "Juice" no, not sterroids, Juicing: a la Jack Lalane. I did 2 this weekend- "Make Juice, Not War" recipe from 'Crazy, Sexy Diet' (Thanks Cheryl) and I'll be making more today. Plus I'm going to try bee pollen in conjunction with all the other mayhem that should be boosting the hell out of my immune system.
It really can't happen soon enough. I know that if I had a flat stomach- you could plainly see the tumor in my lower abdomen. That is, if I showed it to you- I don't readily walk around with the area under my c-section scar exposed. Yeah- that's where it is. VERY uncomfortable. And it's not getting any smaller.
C'MON AND WORK, VACCINE!!!

Tick tock.

It Has Been Done

2011-02-08T00:40:00.002-05:00

I got the vaccine this afternoon.
I was very anxious to begin with, then it seemed like forever before I actually got the shot itself. The shot isn't actually on premises- it's in a lab about an hour away so they don't order it until I show up and get cleared for it. Then I wait.
The shot burned a bit, but I was thinking to myself "If you can handle getting a tattoo for an hour, you can handle a little discomfort that will save your life." After I got the shot, the nurses took vitals every 10 minutes for 30 minutes then I was free to go.
Easy enough.
My friend, Becky, fought cancer and she had a good point... She had a bone marrow transplant that saved her life. She said it was like having a blood transfusion. It saved her life- and that it's possible that something so 'simple' could be the answer and change the rest of your life.
I go tomorrow for a blood draw in Dallas, then I'll fly home. I will have a blood draw every day this week, then every Monday until the next shot. The lab where I have to get the blood draw is about an hour's drive from my house- but no worries.
I can't wait to get home to my beautiful girls. I miss them like crazy. Though it's been a fun week- I didn't stop missing them for one second. I even got a tattoo of their names so I can have them with me everywhere. That pic coming soon since this post is by phone.
Did I ever mention that this study only took 50 participants? And that I was number 50? Lucky indeed WHEN this works.

I'm here.

2011-02-07T12:45:00.000-05:00

I am sitting in the waiting room for the Mary Crowley Cancer Research Center at Medical City Hospital in Dallas.
Nervous.
I am trying to channel the postitive energy coming from friends from everywhere; my cell phone, FaceBook, home and so on.
I haven't felt too much pain from the tumors recently. I don't know that it is a GOOD thing... it's just weird. Hey, they could shrink on their own right? yeah, sure.
But it could have stopped growing... it could.
So I sit here and wait. I was hoping I could get in early and get this rolling.
Only 15 minutes now until my actual appointment time.

Hope to have something GREAT to tell you all soon.

Down Time= Not So Down.

2011-02-05T21:13:00.001-05:00

Got to Austin Thursday afternoon after stopping on Hillsboro (just south of Dallas) because I was just too tired to keep driving. It was nasty and cold and I just wanted to lay down. It had been a long 2 days.
Thursday night we had dinner at a restaurant on Congress... I had the most delicious meal- stuffed tomatoes. I am going over the ingredients in my head repeatedly so I can try to replicate it when I get home.
Friday I basically slept all day. Really. Jamie went into work late because the roads were horrible so I was up with him until he left then went to bed. Then got up when he came home for lunch, then went back to bed, then got up about an hour before he came home at 7 because we were going to meet someone for dinner.
So today I slept in but I did get up and dressed and presentable before Jamie got home. Then Ferrell (Jamie's friend- now mine too) picked me up for a day out. We went to Dillard's for a facial, he bought me some facial treatment stuff to make me all pretty and he also bought me the lovely shoes that I was oogling on the way in.
After that we went to Congress St to walk the shops. It was beautiful out- about 60 degrees so it was perfect! We found some CUTE stuff and then had a little dinner. It was lots of fun hanging with him. We'd hung out a few times when I lived in Austin WAY back, but I never got to hang out one on one. He's wonderful!
Tomorrow is brunch and my new tat probably :) then I will head to Dallas on Monday morning. The Doc's appointment isn't until noon so I have plenty of time to get there. It's easier for me to do it first thing in the morning because by afternoon I need a nap.
Monday night I will be hanging with Hanner and his family again. SO nice to have wonderful friends. I will have been in Texas for 7 nights and only paid for a hotel room ONE of those nights. I am very lucky to have good friends.
Still a little anxious about what the doctor will say on Monday but it doesn't do me any good to stress about it now. So it was nice to be pampered a little today.

Quickie

2011-02-02T20:45:00.001-05:00

Got stranded in Memphis after the flight to Dallas left without me last night. Spent the night in a hotel, courtesy of Delta. Caught the first flight out this morning. Made it to Dallas by noon. After being screwed over with costs @ Dollar Rent A Car I made it to my appointment.
I gave them enough blood to satisfy a ravenous vampire, got an EKG and got on the road to Austin since I won't be needed in Dallas again until noon on Monday.
It's a 3+ hour drive and I TRIED, but I'm exhausted so I gave out and got a room for the night. I'll head to Austin in the morning. It's been a LONG/busy 24 hours.

What I gather about the vaccine:
It's promising. I just have to stick around long enough to give it a chance to work. Results are slow to show- 8-12 weeks and maybe as long as 18 months.
With this big ass tumor in my pelvic area, the doc may say I should have surgery instead of the vaccine. It's unlikely but there is still a chance. I can have the vaccine AND surgery AND radiation if I need to.
It's cutting it close... If this tumor continues to grow at the rate it's going, I will HAVE to have surgery. There's really no way around that. And a colostomy bag. Whee.
But there is no hard, fast rule that says the tumor will still grow (happy thoughts, happy thoughts- stay with me folks, positive thinking) and maybe I'm just so damn special that the vaccine will work in a week.
It will work.

It. Will. Work.

Rachel and TX vs. Cancer- Part 4?

2011-02-01T10:46:00.000-05:00

I'm leaving today for Texas again.
My plane HOPEFULLY heads out @ 6pm. I hope the weather cooperates so I can at least get out of Ohio. It's looking bad.
What sucks is that the screening for the vaccine HAS to happen on a Wednesday so I can get the shot on Monday. The weather better not screw me out of a week or maybe the hospital can just accommodate a later time.
This HAS to be done ASAP- I'm not waiting. If I have to rent a damn car and drive down I will.
So this last weekend my sister and I had a party. Well- she had a party for me. That's how it worked out. A LOT of people showed up. It was a girlie party- Wasn't supposed to be a birthday party, just a party that happened to be around my birthday. I don't want presents, just wanted to have a get together. ANYWAY- my sister got me a cake with Robert Downey Jr. on it. It said "Happy Birthday Gorgeous. XOXO Robert." Too funny. He even looks good on icing. Though he probably looks better with icing on HIM.

What was I talking about?

Oh yeah- the party was a success. One friend gave me pearls- a necklace, bracelet and earrings. She works at a jewelry store and heard me talk about them one time I was in. She's been plotting for a while. I got a lot of cards. Though I didn't need anything at all except for people to come to the party.
Sunday I felt like crap most of the day. (not from drinking either) Then wallowed in it. That's one of the reasons I go to work. It gets me out of bed and cleaned up and moving. I don't think about 'IT' all the time.
That night, Mom had many birthday dinner for Me, My sister Micki and my brother Luke.
I'm catching hell from Mom and Micki because they think I'm not eating. The painkillers lessen your appetite, I don't eat as much as I used to, or as often, and I TRY to make better choices. Plus, I have CANCER- That helps a little in the weight loss. I have plenty to lose anyway. Thought I am still eating thank you very much.
Last night my Dad, sister and I went to Outback for dinner (b-day) and some anonymous customer paid for my meal. I have no idea who it was- I didn't see anyone I knew. What a nice present. Wish I knew who it was though.

So today I have to get packed and get outta Dodge. Dad is driving me to the airport- I'm sure I will be putting my notebook computer to good use and reading the book Cheryl got me AND for a departure from the cancer talk- I'll be reading "My first five husbands, and the ones that got away" by Rue McLanahan.

I'll keep you all in the loop. It may end up being a road trip.
But-
Whatever it takes.

A Glimmer... I Guess

2011-01-28T11:08:00.002-05:00

Things in my head (and evidently in my body) are shitty right now.
It's hard to even THINK the word hope when it seems I've fallen so many times that I shouldn't even try to get back up. How much bad news is allowed? How long can one hold out for the good news that never seems to come? It's like a bad dream where I'm running down a hall toward that good news but the hallway gets longer and longer the more I run. Even though I'm exhausted, I don't like the idea of going to sleep because I wonder if I'll wake up. More fatalist thoughts. "This is my last Winter." "Vera will not remember me." "Iris might remember me." "The girls will call someone else 'Mommy.'"
My aunt was diagnosed with breast cancer when her youngest daughter was 5-6 months old. Vera was 5 months old when I was diagnosed. My aunt died 2 years later. I am coming up on 2 years and shit for me just went downhill pretty fast.

There are 'options' I guess.
*Surgery: This would almost definitely end with me having a colostomy bag. At this point I don't give a damn. It's such a mess in my pelvis that you can't even tell where my uterus and ovaries are- there's too much tumor. Nice. They can't see my ureters either. It's just a matter of time before the tumors choke off my ureturs and bowels.
*Radiation: MIGHT be a possibility but the tumors are way bigger than what they do radiation on. A Radiation Oncology Doc is looking at my scans now to see what's possible.

I left a message for one of the docs in Dallas to call me. He called yesterday afternoon. He said the vaccine should keep the tumor from growing (if not shrink it). From how he talked, he seemed to have faith that the vaccine would work. I felt only slightly better.
On this clinical trial I can't do any chemotherapy- which is fine because none of them WORK. But I can have surgery and/or radiation. (Little triumphs)
I only have 4 days before I leave for Dallas. I feel like a ticking timebomb.

I'm drinking only water and occasionally milk and reading "Crazy, Sexy Diet" Thanks to Cheryl- I will be incorporating green smoothies into my life soon. Vegetarian may be next.

Whatever it takes.

I love you Iris and Vera.

Bad News

2011-01-26T12:26:00.001-05:00

Met with the nurse practitioner today and went over my CT scans.
Compared to last month's CT- there is a tumor in my pelvis that has practically doubled in size. (Now about as big as a grapefruit.). That's the discomfort I've been feeling and then there is new tumor on my left side. That one isn't small either.
Please pray for me. I don't think I've said that in so many words. If you don't pray, please send good vibes, thoughts, whatever it is you do in my direction.
I can't leave my girls without a Mommy.

At Random

2011-01-25T09:23:00.002-05:00

I've been lazy. Or sick. I really can't tell the difference anymore. I guess you just get so used to being sick that if you're just plain tired and could use a brisk walk to get the blood flowing and you'd be fine- you can't really tell the two apart.
I have a cold- I know that much. But Sunday I spent the entire day in bed. For real. I got up to make lunch for Vera and myself (Iris was at Grams' house). But I couldn't muster up any energy to do anything. About 6pm I got off my duff and cleaned Iris' room, yay me. Then promptly went back to bed. I think Vera has felt under the weather too so she was perfectly happy to veg out in bed with me. You know I was tired when I didn't care that we were watching 3 hours of Dora. Yeah- I wasn't kidding when I said I didn't get out of bed.
I wasn't feeling hot last week with my abdomen getting hard (and no, that's not a 6 pack that I wished for Christmas) and just feeling like someone is sitting on my stomach all the time. I called the Onc and scheduled a CT scan. I had that done yesterday... and I will NEVER acquire a tase for the barium smoothies. Barf. Tomorrow I meet with my Onc or the Nurse Pract. to discuss the CT results and compare them to December's CTs. I'm not-so-secretly nervous. Something's definitely changed, but I'm crossing fingers for it to be just a bunch of scar tissue. It doesn't FEEL like it though. When I push on the hard areas, I can feel it deeper, JUST like it felt before diagnosis.
This vaccine HAS TO WORK.

Well, backpedal to last week... I got a late text from my husband's aunt. Carla used to live nearby, but moved to Tennessee last summer when her husband got a job there. I dig her- she was fun to be around and I wish I would have spent more time with her when she was local. She texted me last Monday night to call her when I got a chance.
When I called her I was thankful that I was sitting down (as I usually am). Since moving to Tennessee she found a church that she loves- Crossroads Community Church of the Nazarene- and had put me on the prayer list. I'm not sure how long she's been going there but it's not been a year yet- that's for sure. Anyway, she wanted to tell me that the church board had voted that night to pay for one of my vaccines. That's $2,000. That's not chump change- not to a church. I cried. I had a hard time sleeping. Again- what do you say to that? Other than thank you? It's so overwhelming.
I am truly grateful for any help I get.
I can't afford these vaccines on my own. I will probably still have to take out a loan to cover the costs. But help is coming in all forms- in those mysterious ways that God works. A nurse/listener has offered a voucher for an Airlines to get to Dallas and back. Again, it's a weird feeling to accept the help and I hope I never get used to it. I don't want to. I'm okay with being uncomfortable accepting help... if that makes any sense.
Please send thanks for Crossroads Community Church of the Nazarene in Tennessee on my behalf. I will be sending them too, but I don't think it hurts to have thanks coming from all directions- including Iceland, Hungary and Australia if that's something you do.
I am humbled and blessed.

On another note- A fellow blogger and Sister-In-Arms against the bastard that is cancer lost her brave battle with Breast Cancer this past Saturday. She was a fighter. She sometimes posted a reply to my blog and posted to my Facebook too. Damn cancer for everyone and every THING cancer takes from us. Please support cancer research when you can. Rest In Peace Daria. I fight for you too.

I have a date... I don't think he's paying for dinner though.

2011-01-19T09:26:00.000-05:00

I have bought the ticket and reserved the rental car.
I will be heading back to Texas on Feb 1. Screening on the 2nd, vaccine on the 7th.
Not a moment too soon I think. The pain in my abdomen is getting worse and I'm getting more and more paranoid about it. I was under the impression that Dr. Sardi had debulked quite a bit of tumor but hell- I don't know. I've been duped before. I thought I was 'good' for a while. That some down time to get a plan in place and get it started wouldn't have many drawbacks. If this pain in my abdomen is the cancer taking over then I need to get to my 'arrangements' that I've been putting off. I should do that anyway.
I am stupid paranoid about this though. It's hurting- I won't lie. I'm going through painkillers like an addict. Hey- it's the truth. I still have to function. You don't stop being a Mom because you're in pain. You might slack off a bit, but you can't just throw your hands up in the air and say "I can't be a mom today- I hurt."
So I am leaving work early to go home and lay down before the girls get home.
It's a shame that a week with such a high had to be followed by total crud. I guess at least I had that high, right? Otherwise it would have been just another week followed by total crud.

Well, here's to hoping the next 2 weeks fly by without any complications. Let's get this vaccine show on the road folks!

On With The Show

2011-01-16T02:05:00.000-05:00

I'm still processing the last week. The trip to Disney was such a huge thing for us and so dear to me, it will be a while before it's really sunk in.
Not enough 'Thank Yous' in the world.

On the cancer fighting front- I have an appointment on February 9 in Dallas for my screening then getting my vaccine on Feb 14. So I will be in Texas for a week. I will probably be heading to Austin for the waiting days to visit with my friend Jamie. Love him.
I will be doing some calling on Tuesday to see if I can get in any earlier before I get a plane ticket or calling the ACS about the free flight. I've been getting increasingly uncomfortable in my lower abdomen and I can feel hardness and lumps when I push around it. It sucks because I hear a clock ticking and the cramping is kind of a constant reminder that the vaccine is one of the last hopes. I don't really know what I'll do if it doesn't work. Can't think that way but ugh, the discomfort is constant... Was through Disney but I refused to acknowledge with anything more than popping a pill.

I'm anxious to get this started- and I WISH I could get real numbers on how well the vaccine works. I know- just numbers- but it's something to lessen the unknown.

Well- I will have more concrete plans on Tuesday. And like a good blogger, I'll let you know!

I don't even know where to start.

2011-01-14T13:34:00.001-05:00

One week ago I was heading to the airport for a flight to Orlando, FL and Disney World.
I didn't know what was ahead of me.
Before we even saw a volunteer from Inheritance of Hope, I recognized a fellow survivor I'd corresponded with a couple of weeks ago. We all loaded up on the bus for the resort- staying at Coronado Springs. We had just enough time to find our hotel room and get the girls changed since we had their clothes suitcase as carry-ons. We didn't get to change because our luggage hadn't made it to the room yet.
We found our way to the banquet room where dinner was being served. As we sat down for dinner we met what seemed like hundreds of people- volunteers, other families like ours, I was so afraid that I wouldn't remember names and embarrass myself. Luckily everyone wore name tags. :)
After introductions there was a knock at one of the doors and a little boy answered it... Mr. Mickey Mouse was on the other side!
Instantly Vera tried to wiggle out of my lap and Iris didn't know what to do with herself. Once Vera got to him, she wasn't about to let him out of her site- so the volunteers had to distract her with tickles so he could make his escape.

From there- the volunteers took the kids to do activities with them while the parents went to rooms for discussions. Everyone talked about diagnoses and family situations. Of course we had some things in common and though I don't wish this outlook on anyone, it was nice to have someone TOTALLY understand your situation.
The girls were beyond exhausted by the end of the night- Vera fell asleep on one of the volunteers. She doesn't just do that with anyone so with that, she had picked our volunteer for the weekend. The next morning at breakfast we asked Shelly if she wanted to tag along with the family as we went to the Magic Kingdom. We were thrilled that she came with us. She was a total blessing. The girls loved her and Jason and I really enjoyed talking to her and getting to know her. She held a place in line for us to meet Rapunzel and Flynn Rider while we took the girls to look around. She took pictures, changed diapers, grabbed snacks and so on. What a blessing she was. And I'm sure she IS to her family. I am sad to say that Iris chose NOT to get the royal makeover... she only wanted sparkles in her hair and that was it. eh- no big deal I guess, I just thought she'd want to get done-up.

So Iris and Vera got to meet Rapunzel and Flynn and Tigger and Pooh a little later.

Most of that first day at the park was spent looking around because it was a little more packed than we'd expected and we had to be at Disney Hollywood at 6pm so we didn't want to lose track of time and end up being late.
Dinner was with the IOH at Pizza Planet after the group photo in front of the big sorcerer's hat.

Sunday we hit the Animal Kingdom- my cousins Carla and Kelly met us there for the day. :) We got to meet Rafiki and Pocahontas (another MUST VISIT for Iris) and watched the parade then caught the Bug's Life show. Vera was NOT a fan of the scary part, but she made it through. And we rocked the 3-D glasses...

Sunday night we had dinner and sent the girls off for "Kids' Night Out" The volunteers took the kids to the Magic hours @ Disney World while we met with the counselor that worked with Iris a bit. She said Iris was not showing extreme signs of grief or distress. I was happy to hear that she was a very average 4 year old. That kid deals with more than any 4 year old should have to.
After that, I made my Legacy Video. I chose to pick questions to answer about myself on video. Just a little something for the girls to have- to learn about me. Things they might not think to ask, things they may want to know after I'm gone. I did pretty well until the end "What do you want your girls to know?" ugh.

After I composed myself, we headed to Magic Kingdom... by this time it was 10:00pm... just enough time to hit Space Mountain one time before the park closed at 11. We met another couple from the retreat- Mike and Kristi- Jason took one look at Mike during our first group session and figured they'd get along great. Jason was afraid he'd end up very lonely, but he and Mike had a lot in common and found some camaraderie. Both 30-something dads of young children (their children were pretty much the same ages as Iris and Vera) with wives in difficult medical situations. Guys need support too, and I think really that the spouses need more support than the patient at times.
It was nice to get to know them and I'm sure we will be in touch with them from now on.
We left the park that night, and I didn't know that we'd walked right past t Shelly- that had my girls with her. They were piled on each other- Vera fell asleep in Iris' lap and Iris was sleeping on Vera's back. LOVE IT!
So we got them back to the hotel for some much-needed rest.

Monday morning was breakfast and closing ceremonies. They recognized all the volunteers who gave of their time to help the families on retreat. The volunteers were beyond wonderful. The Volunteers also presented us with photo albums with pictures from the weekend. It was hard to keep real composure... I can go from smiles to blubbering idiot in .10 second. I was so grateful for Shelly and the other volunteers who were so great with my kids.
The founders of IOH - Kristin and Derek Milligan- stood up to speak. It is because of their vision that we got a dream weekend with the girls and have pictures and memories forever. It was really a worry-free weekend. I don't even have the words to thank them for everything they did. I met them both and I think the world of them. Both super people- doing all this for others while they are dealing with their own hardships in the same arena. It's beyone anything I can even describe accurately.
I am actually having a hard time closing this post out. I just want to gush and gush about the people and the memories. And I am afraid that I've overlooked something.

Let's just say that I am continually trying to pay forward all the good that has been afforded me.
It was a dream weekend and a real blessing for us. I will never forget it.
Thank you Inheritance Of Hope.

Watch the Video

2011-01-12T20:29:00.001-05:00

Sorry I haven't updated- the Disney trip was wonderful, so much that I couldn't blog about it properly without proper time to do it. I hope I will have that time tomorrow.
For now I will say that it was a great experience. We've all come home with so much more than souvenirs and pictures. I just hope I can do justice to how I feel about it tomorrow when I can sit down and write.

More as soon as I can.

News

2011-01-04T13:42:00.001-05:00

Just a short, happy note.
The Mary Crowley Center called this morning. They have 5 vaccines ready to go. I have to go once this month for a screening, then I will go back in February for the actual vaccine.

So Yay for being in the 80%!

It's a good day.

A Week To Remember

2011-01-03T09:44:00.001-05:00

Well, the New Year is here.
I want to approach 2011 with excitement, hope and positivity. But honestly, I've done that with every year since 2008 and it never seems to pan out.
I've had bits of good- but nowhere near a span of a year with GOOD.
This week is kind of a clincher: I'm waiting on the phone call from the Mary Crowley Cancer Research Center to see if they can actually make the vaccine for me. I want to call them but I'm scared to death to do it. I'm on the edge of my seat really. This is like having only one basket in which to put all your eggs. So I did. High hopes- and that means a hard landing if it does't pan out. I'm half expecting bad news because I can't really remember any good news that actually turned out to be good news as far as cancer treatment was concerned. It's been "Well, we ____ but there's still _____ and more than likely (insert something awful here)" Irritating.

But also this week- The family trip to Disney World in Florida! I haven't even started packing- but I am making a list of what we need. Does that count? It'll be a happy hassle to get out summer-ish clothes, plus you can pack more. I guess they will have volunteers going around with families to take pictures. Beautiful! I'm usually the one behind the camera so those 'memories' would be- "See the picture your mother took?" And you can only take so many self-portraits, you never see the background. Hello. I don't have much patience for people who say "uh, I don't know how to take pictures." Really? You can't point the camera at what you want a picture of, make sure it's all on the screen, then push a button? C'mon. That's a piss poor excuse to get out of it. Carry a camera and take pictures for 5 minutes. Voila! You can do it.
I took pictures for a family at the Statue Of Liberty. They wanted the NY skyline in the background. Simple. They got great pictures, I held the camera up (mind you- I'm only 5'2-1/2") but got them AND the skyline... that was the reason for getting the pics on that side of the statue. So we wanted the same picture with the whole family (AND the NY Skyline)... you know what our picture looked like? Poo. Yeah, we're all in it- but were we at the Grand Canyon? The Eiffel Tower? The Space Needle? Branson, Missouri? You'd never know. They didn't bother to hold the camera up another few inches to include the skyline.
It's like other "should knows" in life. You should know how to take a ~~good~~ decent picture. You should know how to make ramen noodles. You should know one really great movie. You should know one GREAT one-liner joke. You should know how to replace the toilet paper roll. (This one is a problem in my house. When I die there will be piles of toilet paper tubes alongside the toilets- and nothing on the actual holder.) You should know how to get a hold of a super Fix-It guy.

Eh, More life lessons from moi. And I've gotten off track again.

Bitch, bitch, bitch. I'm done for now. I promise.

I'm really stoked to get to Disney to see the girls' faces light up. To see them the first time they encounter a "Princess", the first time they see Mickey Mouse. I forget a lot- but there are things that sear into your brain and I just know this experience will be one. Right up there with hearing "I love you too" for the first time from each of the girls.

I will update if there is news to tell before then.

Post-Holiday

2010-12-27T09:55:00.000-05:00

As you can tell- it's been over a week... actually almost 2 since my last post. Sorry about that.
You can imagine I've been nothing less than busy. I had ZERO Christmas shopping done, the house was a mess, (and is again) and I'm still trying to catch up on sleep. That will never actually happen. I just want to sleep for a week- if the week happened to be in a wormhole where I wouldn't actually LOSE a week of time.
I'm waiting on the word from Dallas whether they can make the vaccine from my cancer. It's a bit nervewracking because it's a 20% chance that they CAN'T. I know, I know- that means an 80% chance they CAN. But as you know, I seem to be pretty damn good at beating the odds. I mean, really- Lynch Syndrome, Appendix cancer... not just appendix cancer, but the RAREST of the appendix cancers. I'd play the lottery if I thought my luck would actually change at any point.
I only consider myself lucky that I FOUND the cancer before it killed me without knowing it.

Okay- moving on. I have to make the preperations for the Florida trip fast approaching. I am wondering if the extra couple of days we'll be spending will be worth it. Gotta rent a car, have food for the fridge and all that. Money that should be spent on bills, treatment or responsible things. It's not going to break us at the moment I guess. Ugh, what to do... We might just be worn out from the days before. I'm having second thoughts.
You know, there just isn't a protocol for being terminally ill. There should be an outline of what is acceptable and what isn't. Because Dammit, I feel like I can't do the right thing now- EVER. I am trying to balance being responsible with living in the moment because I don't know what is next. Hell- was this my last Christmas? A friend held bake sales and raised money to give my family a great Christmas. The girls got so many wonderful things! I was torn about accepting it because I worry so much that people will judge and hate me and I still worry that people think I'm faking because I still hear all the time "You don't LOOK sick." I mean, if you've been told that you don't have much time to live, what do you use fundraiser money for? Do you use it for fun things with your family? Are you supposed to put it in your kids' college account? Pay bills with it? buy something totally frivolous? Pay for your ton of perscriptions? Pay medical bills? My Mom got us a Wii for Christmas... are people going to judge me for having that in the house? Honestly- being a charity is stressful. I've cried over how to handle THAT just as much as I've cried about having cancer. If that gives you any idea. I can't imagine I'm the only one.
"Did you hear that Rachel has a new bankety-blank and a blankety blank and I heard that she's going to blankety blank?" I'm thankful for what people do to help - but it's also the source of much stress because I can just hear other people talking.
Maybe people aren't talking... maybe I'm just paranoid. Or maybe I'm right on. I'm effin' stressed just talking about it. But you know what? I think it needs addressed because you hear stories of people faking illnesses to get money and to hold fundraisers just so they can get a boob job or go on vacation to the Bahamas. Those stories make me want to punch those people in the throat. Not only are they making a mockery of genuinely SICK people, but they have made those sick people feel bad, awkward, guilty about accepting help- in whatever form. I don't know what else to call it- Charity. That's what it is. I've been told that it's not what it is, but I can't think of another word for it.
It's frustrating. That's another word for it I guess.

I totally didn't mean to jump on a soapbox, but that's where my mind went. Kinda sad that it's where it went when I was thinking happy thoughts about Christmas. We did have a good day. Iris was sick Christmas Eve. She spent the evening sleeping, fighting off something. She was better or "GREAT" as she said Christmas morning. I couldn't get enough of the smiles on the girls' faces. And there were unlimited hugs and "Thank yous." I hope I recorded enough to memory. I try not to think this may be my last, but I think about Marcie, who passed in September. I'm sure she didn't think 2009 would be her last Christmas.
Now what to do for the New Year. Will I feel guilty about not spending it with the girls if I decide to go out?
See what I mean?
It never ends.

It may come as a surprise to you, but I'm actually in a good mood right now. I just think too much. It's exhausting.

So maybe to relax, I will think about that 2 hour massage I got as a Christmas present from my husband. Ahhhh.

Part... uh, whatever.

2010-12-15T20:03:00.001-05:00

I was discharged this morning- made it back to the hotel by 10am. Got a much needed shower and lazed about until my friend Jamie made it up from Austin. A 3.5 hour drive just to see little ol' me. So nice of him. Made me feel good that he would do that for me.
We talked- went to lunch with my Dad and Jamie's friend Glenn who rode up from Austin with him. Jamie and I haven't seen each other since September 1999. It was like no time had passed at all. Happy.
So this morning Dr. Kuhn seemed amazed at my recovery. He said he got plenty of specimin for the vaccine and research in Houston. Hey, there are little parts of me floating all over the country by now. But so far, so good. I've learned to not hold my breath though. I'm supposed to follow up in 2 weeks- but I think it may be more than that. $500 for a plane ticket just to follow up is a bit much. I may just have to schedule time to see him when I come back in February for the vaccine injection if all goes as planned. There is still a 20% chance they won't be able to make a vaccine. That would suck.
So, next on my horizon- getting home to the girls. <3
Then Christmas, Then New Year's, Then Disney!
Moving forward... Always.

Part 3

2010-12-15T06:37:00.000-05:00

Had surgery yesterday. It was forever getting into the OR, I was wanting a huge bottle of water. Surgery was scheduled for 11:30 but I didn't even get in until after 2.
Wasn't the doctor- I guess the earlier surgery in the same OR went over.
It was a short surgery, I was 'awake' by 3. I know have a belly button again. it's kind of high but who cares? I really did it for Iris.
This recovery of course is way easier. No NG tube, no bowel prep or anything of the sort. I'm just sore on the belly and that will probably just be for a couple more days. I didn't even get staples- he used glue.
I have high hopes for all this stuff to work. I have to do some planning and saving for the shots though- $2000 each shot unless I get some grants to take the total pricetag down.
Well, that's all there is right now.
I will be talking with Dr. Kuhn about how it all went, if there's anything to tell, I'll let you know.

Hugs

Texas and Rachel Vs. Cancer Part 2.5. "Yes we Can, Sir"

2010-12-13T21:05:00.001-05:00

Met with my next surgeon, Dr. Kuhn, today. He's the next in the long line of surgeons who want to do some cuttin' on me.
No hysterectomy- but a laprascopic "procurement" of cancer junk in my abdomen. I suess there's "plenty" to get. :( and :) at the same time.
I really like this guy- he was initially concerned that we had waited too long for him. Nice guy already. He did an ultrasound on my abdomen to look for more crud- or just make sure it was still there...... yep, still there. Damn.

I have a good feeling about him- but he's just getting the stuff- it's up to my cells to do the work.
BONUS though. Dr. Kuhn is taking out my port AND....... giving me a new bellybutton. LOL. I told him that my 4 year old cried about me not having one (and she did) so I just asked if he could swing a new one. So funny. what a Christmas present.
I go in tomorrow at 8am. Surgery at 11:30 and spend the night in hospital then discharge on Wednesday, a couple of days in Dallas- check back with the Doc on Friday, home Saturday.
Yee-Haw as those Texans say.
I'm in a very good mood. It's been a good day- and to round it off, I got to see my girls on Skype. I miss them terribly.

Wanna know how I feel?

Complete with hoards of people behind me, making me feel like I can do anything.

Texas Part Two- The Flight

2010-12-13T20:50:00.004-05:00

Texas, Part Two
I’m sitting in a plane, bored outta my head and wondering why people don’t talk to each other more. Is it because no one cares anymore? Am I weird? Is everyone else stuck up? Am I stuck up because I’m not talking to anyone?
I think I annoyed the hell out of my Dad on the last flight because I was talking too much- but we were on the plane for almost 2 hours before we even took off! We missed our original flight because there was a ton of snow in Columbus and we ended up getting de-iced twice while waiting on the weather to break long enough to get out of there.
We ran to the next gate hoping to beat the other people from our late flight to the new, now boarding flight to Dallas. We landed at 2:10 and booked it to another terminal- they were getting ready to board for a 2:45 flight. So I got my exercise for the year. And I think I got shin splints in the process. So here I am, Aisle seat. Hungry. And the people across the aisle to my left are eating yummy looking salads with Italian dressing... I know it’s Italian because I can smell it. Ohhhh, how I miss salads. Can’t eat them anymore though. They wreck me- for DAYS. I’ll just leave it at that. I’d like to just lick a lettuce leaf with Italian dressing on it though.
To my right- a 20-something bodybuilder. He’s cute but probably thinks I’m just old and gross. He’s sleeping.. that’s why I can write about him.
And all the way to my right- a dude who is evidently not comfortable with flying because he “Held On” for the take off and the first 15 minutes of the flight.
All is calm now. It’s so quiet- and there’s even a baby in the row behind me. She must be sleeping. Wish I was but I’m too afraid to do something stupid in my sleep and embarrass myself. No thianks.
I was looking over the paperwork for the Vaccine Trial. Basically it says that it probably won’t work but we’re pioneering a trail for future cancer patients. Hey- I’m cool with that, but I want to live too. I don’t think that’s greedy. Of course I want others to benefit from this research- but I’d like to in the process. A friend of mine who evidently doesn’t read this blog because he didn’t have a clue what I was doing in Dallas wants me to go skydiving with him on one of my trips to Texas. I told him I didn’t think it would happen. He said the Rachel he knew would do it. The Rachel he knew was 23, cancer-free, child free and was able to take risks. A lot has changed in 12 years. I can’t say I’m cracked up about the idea of fighting cancer this long and however long I have to only to end up a wet blob on the ground form a skydiving accident. This isn’t a Tim McGraw song. I have kids to live for. Do you think I’d be flying back and forth from Texas, having surgery after surgery after surgery because I want to take crazy risks? I do those things to stay alive... for my kids.
Yep, I’d love to be footloose and fancy-free but I’m responsible for my girls and that responsibility includes staying alive to be a Mom.
I sound like an old fuddy-duddy, right? Well, I’m not going to go eat a blowfish either.
I just wanted to say blow.

So I am in row 21, seat D. Dad is in Row 26... right next to the toilet. Hopefully he gets a nap because i think I kept him up on the last flight.
We’re getting a car- no SUV this time unless I luck out again. Right.
Then to the Hotel. I think I’m going to just sleep. It will be rough for the next few days- Dad is an “Early to bed, Early to rise” kinda guy. I am a night owl and somehow a morning person at the same time. I like being up for breakfast- but I want to go back to bed right after. So what’s the term for that? Lazy... oh yeah.
My Doc appointment is at 3 tomorrow then I’ll find out what time the surgery is on Tuesday and if I’ll be there overnight and for how long.. yadda, yadda, yadda. Dad DID say he wants to go to BillyBob’s and we’ll probably see the grassy knoll. Isn’t that stuff you HAVE to do if you’re in Dallas for more than 2 days? If we’re going to have to be there anyway- might as well make the most of it. And maybe Dad can try some REAL Mexican food.
Well, the drink cart is coming my way and I’m STARVING!!!

More later, Folks.

On My Way

2010-12-10T12:23:00.000-05:00

It's been hectic to say the least- the last week. Getting back into the groove at work- still haven't found it yet- and working on Christmas stuff. We just got the tree up on Wednesday.
Hm, Let me just do things in order:
There was a lot of hub bub about the CT scan and contrast and no contrast blah, blah, blah. It all boils down to the people scheduling the CT scan don't know what it entails... they just do the scheduling and don't bother to get any knowledge that MIGHT save patients time and energy. I digress- and I'm not even going to get into it.
Got my CT scan on Monday- Had the report sent to Dallas for the surgeon to look at. I overnighted the disc. Everything was there on Tuesday as far as I know but the doc had an emergency and was out of town until Thursday. My surgery date was tentatively the 14th- after meeting with the surgeon on the 13th but I wasn't going to hold my breath because when I do, nothing ever turns out like it should. Great track record.
Needless to say that since I couldn't make any concrete plans like securing a flight and help, that the dates turned out to be a go for sure on Thursday morning. Short notice, but at least it's getting done. I'm trying to be an optimist instead of irritated.
So, I will be leaving for Dallas once again this Sunday. My Dad is going with me this time because it is a surgery and he won't let me go by myself.
Surgery on Tuesday should be very minimal and require just and overnight stay if that... then they want me in town for a few days after that. I will be back in Ohio on Saturday the 18th.
After this I wait for the vaccine to be made. It should be about 4-6 weeks- then a return to Dallas for a dose. My Navy Budm Jason calls it 'Antivenom.' That's about right.
I hate jumping in and out of work but I think they understand and they aren't giving me any grief about it.
Right now I am jumping to a million things in order to get out of town without catastrophe following in my wake and staying here for me to come home to.
just a plain old post, trying to keep you in the know.
More later. I'll probably have something colorful to say on the flights to Dallas.

More later....

Hold the phone.....

2010-12-01T15:11:00.001-05:00

Just got a call from Mary Crowley offices. The surgeon won't do a hysterectomy. WTF? NO ONE wants to take out my lady parts. He says he thinks he can get enough specimen from around where my bellybutton WOULD BE but he has to see CT scans first to know for sure. So I must hold off on the happy dance for now. Let's limbo. Whether I can do the vaccine hangs in the balance...

Texas and Rachel vs. Cancer Part One

2010-12-01T14:00:00.001-05:00

It's the day after meeting with Dr. Nemunaitis about the clinical trials I'm elegible for. It looked like five a week ago, now it's more like two. That's okay. The cancer vaccine is one of the two so I am hopeful that it is the end all for treatments. Pipe dream, I know- but you just never know.
I got into Dallas Monday and had an easy time getting to my economy car which turne out to be a brand new, never driven, Chevy Tahoe. Everything IS bigger in Texas- hee hee. Really though- they ran out of economy cars with the guy in front of me. I had a choice of mini van or Tahoe. HELLOOOOOO! No mini van for me- I don't care that I AM a mom, I would fit in with the big 'ol trucks in Texas a little better driving something with some balls.
I got to my friend Jason's house- it was so nice and his wife was great. So nice of them to let me stay for a couple of days- it save me a couple of hundred dollars of hotel stuff. And it was nice to have someone to talk to.
Tuesday morning I met my other Navy buddy, Danny at the hospital. He was nice enough to go with me to the appointment for moral support and for me to have someone to talk to while I filled out the TON of paperwork. We got some Schlotzky's after- Oh how I missed that. Turkey and guacamole' sandwich. nom,nom.
I met with Dr. Nemunaitis, he was very nice. I was nervous that he'd be stuffy and pompous like Dr. Arnold. Not that being such makes you a bad doctor- I just have a VERY bad taste in my mouth from JERK doctors (Dr. Arnold has the personality of Squidward from Spongebob Squarepants- pointed out to me by a hospital associate). But Dr. N was not at all that. I got a good feeling from him. He was very nice and relateable and I wasn't uncomfortable. Hint for ANYONE... if you're intimidated by or uncomfortable around your doctor, you've got the wrong doctor. The vaccine looks like a go and there is another treatment that I could do with or after the vaccine (I think I'll wait until after) that is in infant stages, but sounds very promising.
I think they are interested in my case for more than one reason... appendix cancer is rare. I have the rarest of the appendix cancers. AND I have Lynch Syndrome. I'm a Diamond In The Rough. Dr. N said they had seen Signet Ring Cell Adenocarcinoma but not with Lynch and I don't think they have seen any Lynch cases. SCORE! For what it's worth.
The thing about the vaccine- the grant for the trial was for a certain time and that time has passed. BUT the FDA has approved the extention of the trial, no money though. So the vaccine will cost me a certain amount out of pocket. I'm okay with that, I just hope they can harvest a kidney while they're in there so I can sell it.... like anyone would want a nasty, cancer-covered kidney. Though I may be able to charge more... hmmm.
OH- yeah, the surgery. I may be back in Dallas as early as next week for a hysterectomy so they can do that AND get the cancer specimens they need to make the vaccine. 2 for the price of one. I wanted the damn hysterestomy for over a year now, and now I'm going to get it. A blessing in disguise that I didn't have it earlier. Did I say that already? Well, I mean it. Hooray for another surgery. Let's see how many we can fit into a 2 year timespan. My count is 7. Including my c-section in December of '08. I'm okay with it. Really. I'd like to get it done as soon as possible so I can heal as soon as possible for the Disney retreat.
As of right now, I have an appointment with Dr. N on the 15th, then surgery on the 16th- should be an easy recovery? I think. Then heal over the holidays, Disney in Jan, Vaccine in Feb and monthly after that and hopefully good to go by summer-ish. If at ALL possible, we may do it next week. I'm SO there.

I'm actually writing this on my 2hr+ flight from Dallas to Charlotte. I got a middle seat. :( But I figure I would cut back on explaining it a million times over when I get home. "Go read my blog..... oh, and tell a friend. " har har.
I have made the executive decision to 'commercialize' my blog to make some extra $$. Gonna need it, cuz flying to Texas from Ohio every month and all the other stuff won't be cheap. So I hope you all don't mind the ads that will be accompanying the page starting in a few days, gotta figure out how to do it.

On a different note: I 'spoke' with a friend/aquaintance (actually texted a bit) who informed me that a fellow cancer fighter lost her battle recently. She was only 3 years older than me and left behind 2 young sons. I had the honor of meeting her at the Relay for Life in May. I did not know her well, but from what I saw she was a very vibrant- beautiful person inside and out. She fought with colon cancer and was supposed to have been in remission this summer, but it came back full force. She passed away September 16th, 2010. R.I.P. Marcie. I fight for you too.
I think she was being treated at the James. Possibly by the one and only Dr. Arnold. I can't help but think if she'd have had a different doctor that things might have turned out differently. I do not know all the facts but this is story #3 of colo-rectal cancer treatments/diagnosis at OSU by Dr. Arnold being botched. The thing is- OSUMC overall is great. My sister had an AWESOME doctor/ONC. I WISHED I had some kind of GYN cancer instead so I could have dealt with him. So you can't let the bad apple ruin the whole barrel. The nursing staff at OSUMC was the best I've been around (and I've been around plenty), the GYN Oncologist was a DREAM!!! So to sum it up... if you have a GYN cancer- Dr. O'Malley at OSUMC=WONDERFUL!!! If you have colo-rectal cancer- get thee to Cleveland Clinic or somewhere other than OSUMC.
I will get off my soapbox in just a moment... it PAINS me to hear that someone who supposedly gets a clean bill of health can die within 6 months after that. It is inexcuseable! We're not talking about an elderly person with multiple other health problems. We're talking about a 37 year old woman with a whole life ahead of her. I could just scream. There are so many treatments out there and so much technology and yet she is no longer with us. Right now the only thing I can do is to keep this blog- and keep talking about it to whoever will listen. And even to those that won't... I'll just yell louder.

I hope that if this blog contains any wisdom, that you, the reader will pass it along when you hear any cancer story. The best weapon for the cancer patient is knowledge.

Arm them well.

Thankful

2010-11-24T07:50:00.003-05:00

I go to Dallas on Monday. I'll be staying with a Navy buddy and his wife and then getting to my appointment on Tuesday. Then home on Wednesday. Hoping to meet up with a few more Navy Buds and other friends from Texas. Admittedly- I'm freaked out. There are 5 trials I'm elegible for- including the vaccine- but I have to have a prescheduled surgery. (And it has to be done in Dallas) Here's my brilliant idea.... since I still have cancer in my abdomen- and I know there is some on my ovaries that wasn't removed- I'll have a hysterectomy (that I wanted anyway) and they can get what they need then. They have to have 'fresh' cancer specimen to make the vaccine.
Voila!
Sometimes I even scare myself.
But really- I want the vaccine. I will do the chemo clinical trials if that's all I CAN do, but I'm not cracked up about doing it. I LOATHE chemo. Here's a little insight for those of you who've never had chemo: God forbid you EVER have to do it... But I understand why an older person, who's lived a full life, would choose not to do chemo. I didn't before. "Why wouldn't you fight?" I thought. There is no description for how awful chemotherapy is. I honestly tear up at the mere idea of chemo. And I think if I didn't have 2 little girls that need their Mommy, that I might not do the chemo either. See- I'm not as strong as you people think I am. But thanks anyway.
So- please cross your fingers, pray, wish, whatever it is you do- that I can part-take in the vaccine.

In the meantime, I will enjoy this Thanksgiving. I have a lot to be thankful for. Last night, as I was reading bedtime stories to little Vera, it hit me that I was enjoying reading to her. Not pushing to make a memory, not stressed that these moments are precious and I might not have many of them. I was genuinely happy, content. After books, she wanted me to sing (or 'ning' as she says) She snuggled with me, she laid her head on my chest and didn't squirm, didn't try to get away. She was still awake- I could feel her pretty little eyelashes brush my skin every time she blinked. I was happy. Though I can be happy- it was like a free happy- like the kind I had before diagnosis. I am thankful that Iris is growing into a compassionate little girl with a heart the size of an ocean.
I am thankful that I am still here. So much can go wrong. I'm lucky to have had 5 surgeries in the last year and a half and I'm still here. Still able to function, I'm not down and out.
I credit my family and friends for that. I have shit days- but I am reminded that I am loved by the wonderful things my friends and family do and say. I don't think I could ask for more than that. Hell, my friend Karen is flying in from Missouri to spend Thanksgiving with me. My friend Jenny is at the grocery store- right now, in the cold- doing a bake sale to raise money for Christmas presents for my family. That's just the tip of the iceberg, things that are going on right now. There's been such an outpouring of generousity and care (online friends/readers included) that I don't even know where to start except to say thanks to everyone as a whole. I mean it.
So, tomorrow's holiday means a lot to me.
Thank you all.

Now we wait.

2010-11-22T09:54:00.000-05:00

I told you all that I am headed to Dallas, Texas for some experimental stuff at the Mary Crowley Cancer Center. Well- I've mentioned it a few times since August-ish I think. Just last week there was a news report on just what they're doing in Dallas and hopefully what I will be participating in if all goes well.
Here is the article link if you're interested.
Vaccine
I say if you are a cancer patient and looking for that extra glimmer- look them up.
Right now I am waiting on a phone call from the doctor's office so we can schedule an appointment to get started. Hoping to be in Dallas by this time next week.
I've been hoping, praying for a home run in this fight. This seems like the only one left.
The wait will be worth it if it works.

More later...

Getting Into It.

2010-11-17T12:19:00.001-05:00

This is what happens when I go back to work- I actually work. Hmm, I must work on that.
Well, here's the dirty: I am in the process of trying to get a hold of Dr. Nemunaitis in Dallas, TX. He does cancer research and lots of experimental, uh, stuff. He's rather hard to get in touch with but I will continue to call. I talked to him once before my attempted HIPEC. He said if things didn't go as planned to get back to him- and so I am.
I am also looking into Cancer Treatment Centers of America. Chicago looks like it will be the best bet.
I am also going to talk to a herbalist and am trying to find someone that knows SOMETHING about acupuncture but around HERE it's a needle in a haystack.
I keep looking.
I will NOT be doing any avastin treatments for now because if I need to have even a minor surgery it may have to be delayed because of the blood-thinning that avastin does. I hate to put off any treatment but I have to thing "long" short-term... or whatever the hell you would call it.

On another note- My sister put me, Jason and the girls in for a retreat sponsored by Inheritance of Hope and it looks like the 4 of us will be going to Disney theme parks in Florida in January. From what I know, everything is paid for and taken care of. They will have people to assist with child care and they will have workshops for the girls (well, maybe just Iris) to learn to cope. Though the workshops will be more like games to them. I kinda feel like we shouldn't go because I got to go to New York with the girls in August. Is there a limit on things like this? I feel like I'm being greedy. {Shrug}
We could never afford to take the girls to Disney otherwise- and I would give an arm (or my bellybutton if I had one) to see Iris' face when we walk in anyway. So glad I bought another camera.

As far as ME... I'm doing okay. Glad to be back to work. I get to think about the stuff that shouldn't be thought about anyway- It's all about the entertainment industry on one of my stations. I get to talk about "Heidi and Spencer got married AGAIN!!!!" Nothing like a little escape from real troubles, right? I'm still tired but running out of excuses. I won't be running any time soon... just walking for now. I don't look forward to the inevitable jiggle that will come with a full gallop. blech.
The girls make every day great. I dropped them off at my mom's house to spend the night this past weekend and missed them the minute I walked in the empty house. They continue to be my strength. My reason for getting up in the morning, my reason for putting up with the headache that is navigating the cancer treatment labryinth. My 2 true loves.

Long Day

2010-11-05T22:56:00.001-04:00

So I am back from Baltimore, the 5 hour drive sucks royally.
I met with Dr. Sardi first- nothing much to say except for it doesn't look great. Prognosis is worse after debulking surgery if they don't remove all the visible cancer. And they didn't. there was a lot of cancer there and it was in places they just couldn't get to or get it off. At least he took out what he could. Sucky, right? It gets better. Just wait.
Right after meeting with Dr. Sardi, I went right over to Dr. Ledakis. Get used to that name because he's a surgical oncologist... and my new favorite person. He's a huge guy- I can't wait to get a "My Oncologist can beat up your Oncologist" because it would actually be true.
Dr. Ledakis was part of my team when I had the HIPEC (that wasn't HIPEC). He took the biopsies of my cncer and tested it against different chemotherapies to see what would be effective. There are actually a couple of routes to try: The typical colon cancer treatments and a treatment against a KRAS factor... don't ask me what the hell that is, I just know that if you don't have a KRAS mutation- the cancer is vulnerable to another chemical.
Guess what? My cancer is resistant to all of them. And I have a KRAS mutation. All bad.
What does that mean? There is nothing that will definitively kick this bitch. So I begin trial and error. Ledakis said we can do Avastin treatments which may hold off the growth... maybe- hell, we don't know.
Prognosis. Few, very few make it to 5 years. But less than 5 years is better than 1.
So I am really going to have to buckle down and just do every urban legend cure out there. It's hard to transform your household into the cancer fighting kitchen. ugh.

I am going to get a hold of the doctor in Dallas doing experimental stuff with cancer vaccines and such. Plus, I am going to look into whatever clinical trials I can.
Ledakis said that if after everything- nothing is working- we may go to an old school colon cancer treatment that he repeated MANY times was very toxic. That's a next-to-last resort.
I did ask the question I put here a while back, about having signet ring cell adenocarcinoma and since that is commonly an ovarian cancer too- that maybe try an ovarian cancer regimen against it (even though mine is colon/appendix). I asked an asshole doc at OSUMC about it and he just repeadedly said "But you don't have ovarian cancer- you have colon cancer." DUH- I KNOW, YOU JERK!!! I tried to explain to him I knew that and was just wondering if that had ever been tried. He just looked at me and treated me like I was an idiot.
Dr. Ledakis 'got' what I was asking and he said "We can try whatever you want- nothing is crazy."
I like him already.

So, mostly a shit day. I wanted some good news- but I think I knew what was coming.
CT scans are the next step and a lot of calling around before starting the Avastin, if that is actually what I do.

On a beautiful note- Dr. Ledakis commented on my previous surgeries at OSUMC... saying basically that he didn't understand why any doctor would do that surgery without debulking first. And to do it twice and talk about a possible third one? Ridiculous. I think Dr. Sardi got in touch with Dr. Arnold and hopefully gave him an earful. Maybe Dr. Arnold will refrain from doing that surgery on others and start sending them to get the surgery they SHOULD have.
Kisses, Dr. Arnold. I really hope you read this and educate yourself.

I'm in decent spirits. I would rather live forever... but I'm not dying tomorrow. So yay I guess.
I can't die too soon- I still have to find my DD214 and get it on file at the courthouse for a military rites funeral.
Getting ready to die is a pain in the ass... I'd just rather not do it at all. Problem solved.

Thinking

2010-10-29T22:44:00.000-04:00

I've been neglectful of my blog. Honestly I've been neglectful of a lot of things. I need to send out thank you cards- I have 2 here that simply need stamps and I've not done a thing with them.
I think I'm depressed. But I really don't want therapy. I don't want pills. I just want things to not be as they are. I want my family to quit worrying themselves sick about me. I just ton't want to think- which is probably one of the many reasons I sleep a LOT. I FEEL tired. Really. I take one of my many anti-nausea pills and I'm ready to hit the sack for an hour or five.
bah.
Okay- so it's been a somewhat eventful week... finding a costume for myself, Vera and the husband. Iris has wanted to be Ariel for weeks now. Check.
We did Zombie Night in town but my usually macabre' daughter wasn't digging it as much as I thought she would, so the stay was short. (And we've had an extra in bed with us for a few nights now.) I really like doing neat food for Halloween parties so I put a little effort into that for Iris' preschool party- some meringue ghosts, cookies and swamp juice... it was mostly the boys who took care of that. :)
Tomorrow is the costume party we go to every year- my favorite!! I am going as Lucille Ball, The husband is Rorschach (sp?) from the Watchmen and Vera is a garden gnome... SO cute! I'm doing mozzerella ball eyeballs. We'll see how that goes. Last year I did breadstick bones, they didn't come out so well. I figure I'm not baking anything with the mozz balls that I can't screw up THAT bad.
Tomorrow is also Iris' soccer finale'. Three games and trophies. She did pretty well for not having a clue at first. I guess ballet is next. I can't decide ballet or gymnastics... just something fun for her to do. You get psycho parents with either... you know the ones: "GET IN THERE AND EXCEL!!!! YOU MUST BE PERFECT!!!" ugh.. Had a couple of THOSE parents with one of the kids on Iris' soccer team. And the kid was stealing the ball from teammates to score a goal. Sad really. Let them be kids for goodness sakes.
I digress.
Tomorrow night is also the much awaited trick or treat. New town, new neighborhood. We'll see how it goes. I always have high hopes, but lately it's turned out like my Halloween food. :)

The girls lately have been great except for fighting Iris at bedtime. I notice Vera becoming more attached to me, calling for me more, asking for me more and wanting to just be around me more. It really does wonders for me. She runs to me with arms out, she just walks up to me randomly with hands up saying "Hug too" and she's been saying "Love you too" for a little more than a month or so. That's about the most I could ask for. I get to snuggle with Iris so I feel a closeness with her that I hadn't felt with Vera until lately. Family life is about the best it can be.
It's times like this that make me worry the most.

According to plan

2010-10-21T23:28:00.000-04:00

Nothing ever goes as such.
Recovery is somewhat easy if you don't count the issues in the meantime.
Again, over the weekend, I had constant nausea and abdominal pains from food issues. I am only guessing here, but I think it is all attributed to the gallbladder surgery.
Ugh, who knows?
All I know is that I've called my Doctor the last 2 weekends in a row and I'm not calling her again on a weekend. And I'm NOT going to the damn ER like everyone wants me to do. They will give me a shot of phenergren and it will last a couple of hours and that will be it. Back to being nauseous. I've been exhausted and only really able to get to Iris' soccer game. Even then I was hurting and heaving.
Still nauseous days later- though I am closer to my goal weight. :)
I think my girls are getting used to the way things are and the way they'll probably be for a while. I do the less active things with them. Sitting on the floor playing people, painting, cooking, reading to them and so on. Nothing wrong with that. I just don't like being the 'lazy' mom. It's what I feel like.
So Mother Nature visited me this week for the first time in a year. The joke's on her though- I'll be back on chemo in a month knocking her back a few notches again. In your FACE lady!

Fall is my favorite season. Halloween, my favorite holiday. I am still dressing up for the yearly Halloween party, not as creative as I wanted to be with it, but dressing up none the less.
My house is slowly coming together. I actually put up TWO, yes, count them- TWO things on my walls yesterday. At this rate I should be in the running with the Louvre in a few Million years. I'm hoping to get some stuff printed and framed soon so this looks like a house that is lived in- instead of 'just moved in.'
And to actually get a hobby I'm going to start painting. haven't decided watercolors or oil yet, but I though I'd do little ones and sell them in May for a Relay For Life fundraiser. I will call them "Original Rachels." Who wouldn't want a piece of that? Maybe I'll even get an Etsy shop. I'll make millions!
Of course I can't decide what it is I'm going to paint. I'll let my brush do the work. hee hee.
I also need to start working out... have I said that before? Of course I have!!! But name one person around me that has the balls to say "Rachel, get off your ass and DO something!"

My Dad.

Although he doesn't use those words. I think it went more like "If you want to learn to ride my motorcycles, you need to start strengthening your legs to hold the bike up." Veeery diplomatic Daddy. :)
He's gonna get my treadmill to the basement and get me set up for weights with him. He knows I'll do it then because there are few things worse than disappointing my Dad. I just don't like doing it. Didn't like it when I was in high school, don't like it now. So Maybe it will work for me. Chemo and Cancer be damned, I'll get into shape sometime.
According to plan.

The Itchy and Scratchy Show

2010-10-12T18:21:00.000-04:00

Well, it's been a week- guess what- i'm still pissed off about my situation. Surprise!
I won't go into it though. You all know how I feel.
Since last we saw the fearless cancer warrior- she was feeling sorry for herself.
New, just annoying developments since... I've developed hives from the antibiotics I was on for my incision infection. I broke out on Friday night and have been breaking out every 5-8 hours over the last 4 days. I went to the ER (didn't want to) because I was nauseous and throwing up any medicine I took, even on a sip of water.
Spent a couple of hours at the hospital, got an IV, some benadryl, zofran and steroids. That held me over long enough to eat but didn't keep away the hives. I haven't slept overnight since Thursday.
Last night I took a 3am trip to Wal-mart because it seemed like a better idea to get something done rather than to sit at home, in the dark and scratch myself silly. I was keeping my hands busy doing something other than think about my itchies. I made myself happy by getting Iron Man 2 (RDJ is my celeb crush) and got a CD.
A little 'Rachel' trip while I was shopping for grocery necessities.
I've broken out I don't know how many times and my Claritin and Benadryl and prednisone aren't doing much for me.
Just deal.
I actually DID get some sleep today but I don't want my days and nights mixed up... it seems to be heading that direction. Thank God for late night episodes of Jackass. Keeps me sane.
I'm gonna have to straighten them out before I head back to work. I'd LIKE to do it sooner than that.
If it's not one thing- it's another, ya know?
So that is the low-down on what's happening now. Nothing exciting, maybe not even noteworthy.

Real and Imaginary

2010-10-05T07:17:00.001-04:00

It's 6:30am. I shouldn't be awake. I SHOULD be sleeping in my nice comfy bed, but instead I am on my couch, my cat on my lap, awake, thinking. They call it "Monkey Brain." I call it a pain in my ass. I'd much rather be sleeping and NOT thinking about cancer than unnecessarily awake extra hours TO think about it.
But here I am.
I think it's because my cat decided to sleep on me ALL NIGHT last night. Not that that in itself bothers me, but I think about the nursing home cats that hang out with old people who are about to kick it because the cat senses something and knows they're about to go. Unnerving.
So the cat is right here in my lap purring. I'm slightly creeped out.
I've been thinking more and more about the whole 'lymph node' involvement and what that could mean for me. Also the lack of complete debulking.
It's not fair. Yeah, I'm whining. But it's NOT fair. It's not fair that I've had THIS many surgeries and I STILL have life-threatening cancer. It's not fair that Dr. Arnold at OSUMC gets to spend his days carefree, without cancer and gets to spend oodles of money he makes from cancer patients he probably didn't help a bit. It's not fair that I have to worry all the time about my girls' futures... that they will end up being JUST LIKE those Disney princesses they love- with NO MOTHER.
Do you KNOW how hard it is to answer a 4 year old's questions about death when it's a real possibility? When she asks about the doctors and if they can 'fix' me? And how does someone 'get dead?' She cries at slow songs because she worries about me. How fair is that?

Unfortunately, the reality is that the only me they will know is the on fighting cancer. Surgeries, chemo, surgeries, chemo and so on. Tired, cranki, unable to keep up, getting others to do MY mothering responsibilities because I just can't.
It's bullshit.
I have decided to write a letter to Mr. Arnold, to be sent when I die. It will give him a real piece of my mind. Saying all the things I want to say to him- and I'll be enclosing a picture of my 2 girls for him to keep. So he'll know the children he left motherless. Because, YES, I DO blame him, and oncologists who only saw me as a number or just another body ripe for chemotherapy. None of my oncologists did any research for me. You'd THINK that an oncologist dealing with a rare cancer would be trying further an education, looking for new treatments or maybe a treatment they'd never head of before. Nope. They don't. And if YOU have cancer- don't think for a damn second that anyone is doing anything other than what is Standard Operating Procedure.
"Colon cancer? Wh-h-h-hell, THAT gets IV chemo. Hmmm, appendix cancer? That's, uh, in the colon, sorta, right? Eh, throw that in the colon cancer category, we don't get enough of those cases to worry THAT much about them. Oh, and I WON'T be looking any of this up for further information. Naaaahh. I'm sure that schooling I had YEARS ago gave me all the know-how I need to treat this 33 year old mother of 2 young children JUST like a 70-something with a totally unrelated cancer. Why not? She has good insurance."
Sons of bitches. All of them. Every one who DIDN'T bother for one damn second to look further than my medical record. Every one who didn't do a split second of research into REAL treatments. Every one who just went SOP and didn't bother to educate themselves on the HIPEC or even bother to GO ONLINE AND LOOK A DAMN THING UP. Every one who KNEW about the HIPEC but didn't bother to mention it to me. Every one who knew a diagnosis of PMP but didn't tell me.
Screw you all. I don't have to be nice.

So much for the 'Real' part. Was that real enough for ya?

I was trying to blog last night, but my phone wasn't having it for some reason. I wanted to tell you all about the coolest thing.
I went to Iris' preschool yesterday to pick her up because I'm feeling a bit better and am allowed to drive now (no pain meds). The teacher, Dawn, is wonderful and I almost always end up talking to her for a while every time I am there. She told me yesterday that they pray for me in school every day (it is a faith-based preschool) and that one of the girls there prays for her imaginary friend too. Her Imaginary Friend is Rachel Smith and she has pink hair. Dawn talked to her and asked her if I was her imaginary friend... I didn't hear her say 'yes' but Dawn said she did.
How cool is that? I'm an imaginary friend!
I just HAD to share that. Not too many people get to be an imaginary friend.

My staples come out tomorrow- a couple of them popped which is why there is a small issue with a section of it healing. ick.
At least I won't be dealing withh the damnedable staples anymore.

Well, I guess I'm off to bed to try for another 45 minutes of sleep- if I can get it.

little Update

2010-10-03T11:05:00.001-04:00

Not a lot to update. I've only been online through my phone on Facebook.
It's nice to be home with the girls, though I don't like the fact that I have to send them off every day because I am still not up to par with energy enough to keep up with them. I'm still not supposed to be lifting Vera- her 24lbs is a bit over my 20lb lift limit. Grrr.
I should be getting my staples out on Wednesday- though I have a bit of an infection on a section of my incision. I'm not a dirty person- I've been washing it and TRYING to take care of it, but being fat has overruled good hygiene. So in addition to my slew of pills- I now add antibiotics.
I can't wait for actual recovery, and am anxious to get back to work. Believe it or not. I'll be back sooner than expected. Wonder if that will bother anyone?!?

No Whining

2010-09-27T10:33:00.002-04:00

Sorry it's been a while. But I'm sure you understand.
I've been slowly recovering. Sleeping is especially hard. Our neighbor lady made some homemade chicken and noodles soup and I think Weds, Thurs, Fri- I'd eaten about 5 noodles each day and that was it. My appetite isn't back. I'm not excited for it to be, but I'd like it to be more than what it is now. Carnation Instant Breakfast is my friend for now. I haven't weighed myself to see what I've lost. I think I'd just be disappointed.

Well, if you didn't know by now- I did not get the chemo wash. From what I understand, Dr Sardi debulked a lot of the cancer- resected a few pieces of my small intestine, took out my gall bladder, fixed a hernia and repaired my stomach which was twisted and full of adhesions from the previous pointless chemo washes. I still got sliced and diced: Pubic bone to cleavage- SEXAY! AND- I don't have a bellybutton anymore. Not like I needed one I guess. But now my stomach is Ugly AND weird as hell. I guess I can win some bar bets now though. Woot!

I was discharged on Tuesday. I was nervous as hell to leave. Cold sweats and I think I had an anxiety attack. I'm not proud. Quite ashamed actually. Look, I've dealt with an ilias or HAD an ilias or gotten one or however the hell you put it in a sentence... Before. I was NOT ready to deal with one again. I will NEVER be ready for one of those again. I was with my sister-in-law, Inga, when I left. We got a hotel room across the street from Mercy. My Dad got there around 8. The evening was and is a blur to me. I just know that poor Inga had to play nurse-maid to me as I whined and cried. She was just lucky that in between that, I was sleeping. We left around 11am. Got home around 5pm and got to see my babies around 8.

I should get my 87 staples out this week. I will *sigh* resume chemotherapy in a few weeks since the cancer is now in most of the lymph nodes in my abdomen.
Can't win 'em all, right?

A book?

2010-09-21T01:13:00.000-04:00

I think I will, one day, turn this into a book. Because my life is an open book, my life is a soap opera and my life is a Lifetime TV Drama. So Really-why not?

Today brought a new nurse. Cheerier at least but I was hesitant to ask for pain meds. She started asking me if I wanted them. I talked to her about the previous 24 hours and she seemed to get it and not be so anti-rachel. I've meen getting what I need- so for the time, I'm over the other crap because I have other crap to worry about. Not a couple of nosy, judgmental nurses.

I got up and walked at 7am. Was hurting at the time, but I needed to get out and walk. Did a big lap. The physical therapist showed at 9am and I walked again, did some exercises- they felt easy to do... even hurting a bit. I don't know how that works.
I took a shower. Yes, TOOK A SHOWER. ahhhhhhh. But of course, that's when Dr. Sardi came in to talk to me. He said he'd come back but I didn't see him again today. he must've been busy, because he's good to his word. After the shower, the physical therapist showed for more walking and more exercises. Just after that my sister in law called to say she was about 25 miles outside Baltimore. Dad ended up meeting her at the Hope Lodge and having her follow him back here. I THOUGHT I'd get a nap while they were gone.
Anything BUT. The occupational therapist showed up. She was nice but very talky. I didn't want to seem irritated so every time she got off track with stories, I'd just say, ooooh, what's next? I was exhausted! I really just wanted to sleep. By the time she was done with me, I just wanted to lay down... but the nurse tech came in to do vitals. about 10 minutes after she was done.. in come Dad and Inga. No sleep for me. Dad had to leave so he could get home while there was still daylight.. I think he turns into a princess, no, a Harley Rider- at Dusk.. whatever. Har, har.
Then I was Great Company because I was tired and sore. I think I slept a bunch after Inga (sister-in-law) got here. Luckily she was really wanting to read some Reader's Digests. She had plenty of time to do it. Right now we're having tea and sweets. Already walked twice and got "the question" anwsered with a yes. Things look like I'll leave Wednesday. Hooray!

Tonight- things are good. I'll leave it there. That full moon can be pretty strange.

Insult to Injury

2010-09-20T03:17:00.003-04:00

I am having a bad day. Or night. Whatver.
I had been doing very well with walking and getting around. It took a lot of pain medication to get that done. I was in a LOT of pain after surgery, the little ball of abdominal pain meds and the pump weren't doing it for me. If I asked for more medication the first reaction was "Did you hit (or have you been hitting) your pain pump?" Umm-yes- that's why I am asking for more. It took 2 days a total bitch nurse and a very understanding Nurse Assistant to finally get my pain under control. I think there was some difficulty because I had been taking painkiller before I had the surgery and possibly gotten a tolerance to it. I was in pain around my stomach area.
That sucks- but it didn't take away from the fact that I was still hurting BAD after surgery NOW.
So we figured it out, so it was taken care of, I was getting up and walking and doing weights with the OT.
I was getting 2 doses of the something extra every 2 hours. Was doing great until late morning when my nurse said he was sorried about me becoming addicted to the pain meds and it was his job as a nurse to try to keep that from happening. Okay- I totally understand that and I respect it. I said "Contact my Dr's line for the weekend and let's see if we can get a different drug for the same purpose." I didn't have a problem with that. I thought we could get some pills since Dr.Sardi said I could do solids. The dosage was 4mg every 4 hours, but we had broken it down to 2 mg every 2 hours- my nurse wanted to try the 4 mg and go 4 hours. Personally- I didn't want to have a major high and a major low and wait, in pain for the 4 hours to be up. I thought maybe trying 1mg every 2 hours and wait to see what the Physician's Assistant said. In the meantime my sister had asked for a neti pot because I had been trying to blow my nose- but to do that hurts like hell after surgery (note the time-2pm) asked for it again an hour later. We were told that it would have to be perscribed by the PA, he hadn't called her yet. I had gotten the 1mg dose at 1pm and 3pm. My siser and mother left about 3:15.
5:00 rolls around- I would be getting another dose (1mg) I'm feeling especially sore. 5:20 my nurse comes in and says "Oh, I'll come right back with your dose." I say, "Okay- could you please bring the saline nose wash when you get a chance?".
6:20 comes around. My nurse says "Well the pharmacy is backed up so it will be a while." Okay- could you get the neti pot in the meantime please?" he said that he was the charge nurse all day and had forgotten about it. I totally understand if that is actually the case. But it didn't seem like the case. it seemed to me that he was ignoring me and NOT getting the things I asked for because of the "We think she's getting addicted- she doesn't need these drugs. We don't like her." I felt like he he hated me and wasn't going to help me and was just waiting till shift change at 7:30 to dump me off on someone else.
I finally got up the nerve to contact the PA on duty. they paged her and said that if she doesn't call me, to call them back and they would page agaiin.
I had waited to go to the bathroom because I was sore and had been going for walks and bathroom after the breakthrough drug because it hurt a LOT less to do it. At 6:40 I still hadn't gotten the 5:00 dose. I really had to go at this point, so I go the bathroom, I will give you one guess as to who shows up at the door with a syringe since I'm not out there to get it... Oh, he'll be right back with the dose when I'm done in the bathroom....I'm done right away- fifteen minutes later- he shows up with it. Gee thanks.
I called the answering service again and it paged the PA again. She called me, I just missed the call so I called her back- I told her that I was upset (at this point, I was in tears and you know- it hurts like hell to cry after abdominal surgery) and asked her first if my nurse had contacted her at all today. "No, no one has called about you."
WTH? He said at NOON that he would contact her! So I told her about the whole situation. But I didn't want her calling the nurses and addressing it because I don't need a whole floor of nurses HATING me. I knew if she took it up with my nurse NOW that he would just tell the next nurse that I was a dumb bitch and so on.
Well, she called them and talked to them- reassigned my dose to 1-2mg every 2-3 hours. I was talking to her (it was 6:55) when he came in and haded me saline nasal spray. "Have a good evening" he says.

I don't think I'll take any more pain medication through a syringe, I don't even know if I will do pills. I'll suck it up. My stomach hurts- but I'll stick with my pain pump that I can't tell is even doing anything.
When anyone asks- my pain level is 3-5, no higher even if it is MORE.
Oh and to prove I'm evidently disliked- my nurse from Friday night and Saturday night had an issue with the doseage on Friday night was was giving me doseage Saturday night without issue. Okay, that's fine, well at the end of her shift this morning, I asked her if she worked again tonight. She said, "No not until Monday." Guess who was sitting at the nurse's desk a couple of hours ago?
Okay-maybe she got called in.

So I had to go to the nurse's desk to ask for a dumb favor. I am feeling a cold sore coming on...
The LAST friggin' thing I need is a damned COLD SORE!!!
I have to be MORE of a pain their asses but I need some Valtrex.. like right now. It was 1:30am and they've gotta wake the PA to get her to perscribe it for me. Great- now everybody hates me. Everyone except the Nurse's Aid that did some braid cornrows in my hair for fun last night. She was genuinely nice and sweet. But I don't think she's heard the "Story about me."
So I have taken Valtrex and will try not to add more insult to injury. Waiting on this bad mamma-jamma of a cold sore to take over my face. Good times.

edit: The nurse also told the PA that he'd never mentioned me becoming dependent/addicted to the drug. It must have been a miscommunication.
and my overnight nurse was here as little as possible, not very talkitive and though I would've said "No" to any more breakthrough drugs if she'd offered- she didn't offer once. My PCA pump ran out at 6am- that means I was only getting the painkiller in my stomach- I was HURTING. I thought I'd see if she'd offer anything more than what I had. She asked me my pain level "Seven or eight" I said. She said "Oh, ok."

I must be Blacklisted on the 7th Floor. I am going to be a good girl until I leave because it just gets passed along about "The girl in room Blah, blah, blah." Being a drug-seeking, demanding, will tell on you to the PA- patient. and I don't need any more people NOT on my side.

Ohio University Medical Center had a crappy surgeon- well, let me rephrase that: OSU Medical Center- The James- Had a Surgeon who was good at surgery- but not good at sharing or learning information to send patients where they REALLY need to go. And had a Crap personality. But the Nursing Staff there was TOP NOTCH. I sit here and WISH, WISH, WISH, I was recovering on the 9th floor of Doan Hall.

Here- Dr Sardi is top notch- and I believe he has a good team with him. But the nursing staff is less than great. A few are wonderful- but I would really love to take a walk around the floor for exercise with my ass hanging out so the crap nurses can kiss it.

My mistake

2010-09-18T15:32:00.001-04:00

Talked to Dr. Sardi again today (imagine that- a doctor that comes in on the weekend after a MAJOR surgery)
Anyway- here's the lowdown: He removed my gall bladder. He removed all the cancer that he could. That means he didn't remove everything. There is evidently cancer in a lot of the lymph nodes throughout my abdomen. There is a lot of it behind my liver, but so far my pancreas is okay.
He didn't do the chemo wash because he he doesn't think it does any good unless ALL the cancer is remove.
I misunderstood about my stomach- I guess my stomach had a lot of adhesions on the lining from the previous 2 IPHP surgeries. THANKS AGAIN Dr. Arnold.

As of right now- they are looking into what chemos will work on this cancer. That is basically the last resort.
I'll hold on to the little piece of good news that there is no colostomy bag. Yay

On the other side of it.

2010-09-17T19:46:00.000-04:00

Well folks- I see my husband did some updates during the surgery. He didn't really give the entire story.
Good News- he removed a lot of cancer, not a bunch was among my intestines- so no colostomy bag. From what I could comprehend- my stomach was a mess. The lining was all cancerousTurned onto itself and Dr. Sardi says he was suprised I could eat.
However, he couldn't remove all the cancer and did not do the wash because it is in my lymph nodes around my liver...

The only way to go from here is to find out if this cancer responds to a new chemotherapy and get to it.

I've been up to walk already. Dealt with an unfriendly nurse- cried from the pain of docs pulling off dressing. I have 87 staples from my pelvis to above my sternum. It's a real beauty.

I am at a standstill. I was really hoping that this would be the last of it. Onward I go. Damnit

On the other side.

2010-09-16T00:28:00.000-04:00

I'm done with the damnedable bowel prep. I should NOT have had that crabcake earlier today, but I'm IN BALTIMORE- Hello!
It doesn't matter now. I can't have any thing to eat or drink now.
I called my mother-in-law so I could talk to my girls- Vera was already asleep. Iris was still up. "Are you in the hospital?" -"yes"- "Can I talk to Dr. Sardi?" -"I'm sure he's in bed."- "Oh."
She is really wanting to talk to him. He will probably talk to her when she gets here. I hope so.
THE hardest thing about this whole deal is having to leave my girls. I don't think there is anything I hate more than saying goodbye to them.
I am anxious to be on the other side of this. Pronto.
I hope God, Dr. Sardi and his team can work wonders and are at the top of their game.
So until next time, my friends, take care. Updates at Caring Bridge if you want them. I just want to hold my babies as soon as possible.

I love you Iris and Vera- you are my life. I do all this for you both.
Kisses and Sqeezes,
Mommy

I'm here...

2010-09-14T23:37:00.001-04:00

Just waiting I guess...
I don't think I'll be sleeping easy tonight. I feel fat as hell, I am waiting to shave my legs tomorrow- get all gussied up just so they can look at my worst feature... my fat belly and my cancerous insides. I'd much prefer they would have a gander at my boobs,legs or eyes (the body parts I actually get compliments on) I wanna see just how nice Dr. Sardi is--- if he gives me a little tuck while I'm out. It's only humane to give a fat girl a little help in the flat stomach department when you're already gonna be slicing and dicing that area anyway.

Tomorrow I check in at 9am to get poked and prodded- WHILE I'M AWAKE- and answer a million questions I think. Just pre-op fun..Please don't weigh me, please don't weigh me, please don't weigh me....
We brought "Yahtzee", "Pass the Pig" and a puzzle. that won't be enough- so I will have my handy-dandy.... Notebook! (Thanks Blue!) I guess I'll be playing the hell outta some online games.
The Hope Lodge is nice... but I'm glad I'll only be here for one night and won't be here for the checkout. THAT would require cleaning and I don't think I'll be down for that.
So.... Lucky YOU! You will get One More update from me tomorrow night before 'Go Time' once again. Then it's off to the Caring Bridge site for you when you want updates. My sister AND husband have the info... but nowhere near the amount of gleaming, fluffy charisma that I've got. har har. I kid. I appreciate them doing it for me while I can't.
Off to "LaLa Land for me"... probably in a couple of hours.

Sleepless in Belpre

2010-09-12T02:16:00.000-04:00

Only less sappy I think, than the Meg Ryan/Tom Hanks movie...
naturally I haven't had a decent night's sleep since diagnosis- and maybe even before. I DID have a 5 month old baby and a 2-1/2 year old- so my sleep was kinda like a bad pizza: at least it was sleep of SOME sort.
Lately, I'd say the last few weeks, I just can not manage to get to sleep at night. Afternoon naps- no problem. I can fall asleep like I did in boot camp- anywhere! But at night...... I just can't. now I know what you're thinking, I've got my days and nights mixed up and if I didn't take a nap in the afternoon, I wouldn't have any poblem when it was actually bedtime. I've tried that too and it doesn't work. i'm kinda glad that THAT isn't the problem because I like my afternoon naps with Iris. Milk and cookies for the bribe then plenty of snuggling. I dig it, and I tell her that every day.
I know it's because of the stress. duh. I just can't figure out how to manage it correctly. I can't go to sleep at 9pm through the week so I can get the required 8 hours of sleep. I just don't go to bed at 9. I don't think I've done that since I was 11.
I guess it's not a big deal now since I've worked my last day for a while and won't be needing to get up at the buttcrack of before dawn. Now I can stay up that late- har har.

So I will add that to my whine list... along with my soreness and 'bloating'. Is it called bloating? You know? When your abdomen is swollen so much that you look pregnant again? Well, I look like I'm about 4-5 months pregnant, fantastic. Hopefully that crash diet I'll go on in 5 days will help me out a bit in that department. I am also sore and stiff in my midsection... is it in my head? The closer I get to surgery day, the worse I FEEL- PHYSICALLY. And I'm still nauseous and wah, wah, wah.
Should I revel in it? You know? Because I will miss it when I'm better? ha ha.
So at the times I do feel good, I'm soaking up all the normal I can get. Trying not to freak out about what lies ahead. Someone asked me if I was ready for the surgery. "Nope. Not at all." I thought for a second. So I compared it to giving birth; You look forward to the end result- but you've gotta go through some unpleasantries to get there. Unpleasantries, if I spelled it right, MAY be an understatement. Yes, I think it is. You get the idea though.
Soon this will all be a memory and I will need to focus on more important things- like what my Halloween costume will be and what candy to buy for trick-or-treat.

At the request of a few people I have set up a Caring Bridge website for surgery updates and post-op notes until I am coherent enough to tell you in my own words.

http://www.caringbridge.org/visit/rachelgreenwalt

It should be set up so that you can make comments and such without a huge production of giving your name, social security number, first born, father's Aunt's Maiden name and your college roommate's hometown or soemthing like that. Should be a fairly easy process if you want to leave a comment. My sister said she would update as much as I wanted her to. I told her that I have rabid readers and that she should be updating the page any time she is updated. I was told that a nurse will update the family every 2 hours or so, SO that is probably what you'll get.
Enjoy... I'll bet it's riveting! So riveting, in fact, that it will put me out...
Zing!

Be-logging

2010-09-05T00:39:00.001-04:00

While planning for Labor Day weekend activities I started thinking about the people in my life who have faded away since diagnosis.
I found it funny, the sheer number of people who came out of the woodwork of my past, once word got around. I giggle about being the "Cancer Friend" and that some were simply being looky-loos.

It doesn't bother me. It DID. But I have gotten to the mindset that any publicity for cancer awareness is good publicity. WHO KNEW there was such thing as "Appendix Cancer?" Now more do than did 18 months ago, right? (can't they just take that out?)

I won't say I'm CRAZY about the idea of people who have REALLY done me wrong being able to just drop in and know about my situation so intimately (yep- even cancer patients have people they don't like... even before they have doctors they don't like.), but it comes with having a blog publicly accessible so others may read and actually GET something from it if they need to. I am honored that I could help educate anyone about what goes on in one person's mind when dealing with cancer. I hope someone can learn what NOT to do, what TO do when jumping through treatment hoops- what to do/what not to do when TALKING to someone with cancer and whatever else might help anyone in any position on the cancer spectrum... be it newly diagnosed, a long time survivor, a loved one or a friend that wants to reach out.
And if that means my blog is read by people I lack a fondness for in the process- so be it. I can think of a few people I don't think have a right to know about me and my situation but I am not SO bitter that I would delete a blog just so those select few couldn't read it.
I started this blog basically as a way to vent and to chronicle my experience for myself and possibly my daughters. Then it kinda turned into a reference point for those I didn't talk to on a regular basis... distant friends who wanted to stay in the loop. I started boring myself repeating the some story over and over again. I had little idea I would make friends from this. No idea that what I put out there would be found interesting at all by anyone who didn't know me personally. I keep running into people in my community who have somehow found my blog. Sometimes it's hard to believe the 2 worlds ever collide= the internet and the Mid-Ohio-Valley. It almost seems I'm better known for my blog than I am for being on the radio for the last 8 years. I get embarrassed... um, because I can cuss here, not so much on the public airwaves and a lot of people I know aren't so crazy about my colorful metaphors. When I found out that my aunt had the address for the blog published in her CHURCH'S newsletter- I almost peed my pants. WHAT?!?! Yeah- she did.
It's not like Sheboygan Dan linking here from his blog... I was thinking it would be like bringing Andrew Dice Clay in for a sermon.

Hey, I don't cuss THAT much- do I? It just happened to be right after one of my more "colorful" blogs where I was having chemo and feeling sorry for myself. Not the best time to send a congregation here.

Hm. See how this works? I totally didn't mean to go in this direction, but there it is. And thanks to chemo brain- I don't even remember what I had meant to talk about when I fired this baby up and signed in. Maybe that's a good thing.

Prep

2010-08-30T10:58:00.002-04:00

Well, the clock is ticking. 17 days. Honestly, the part that freaks me out is the ventilator. I'm hoping they give me enough meds that I won't remember being on it. "Try not to fight the ventilator" uh-yeah. Last time I checked, breathing was involuntary. Sheesh.
If only it was JUST a surgery. And I mean that. I also have to think about everything that goes along with it. I am the bill-payer, so I have to train the husband to do the bills while I'm out of it. Then there's the matter of WHO will be in Baltimore with me because no one person can just go and stay for the entire 3 weeks (figuring 2 in the hospital and 1 after discharge). Who's going to be there what days and such and where my kids will be. Then disability coverage- blah, blah, blah.
Oh AND I have to make sure I still have a job to come back to when I DO come back... whenever THAT is. I was told that I will still have a job... but I'm needing that in writing because who the hell else is going to hire me? REALLY. I wouldn't blame them. Even though hopefully I will be good to go for quite a while after I heal from this surgery. Yeah- a little chemo and some docs appointments but I shouldn't be needing any more surgeries after this one. Hell, I should have only had 2 surgeries MAX in the first place. I just took the long way around (the dumbass path).
I shouldn't have to worry about any of that other crap by the time all is said and done. And BOY am I ready for it to be done. Wishing I could just take a pill and wake up in 2 months.

So, I'm on the phone pretty much all day today... have I mentioned how much I dislike talking on the phone?!? Well- I DO! I end up making a thousand calls just to leave messages so they can call me back at the worst time possible. Just about every time.

I know- I should not be worried about who's taking care of my girls or the house or whatever and I should focus on getting the surgery and getting better. it just doesn't work that way. I WISH I should just say "Eh, screw it. YOU take care of everything." Well. I COULD. I could say that... it doesn't mean it will get taken care of.
At least if I do it myself or rather, DON'T do it myself- I can only blame one person... ME. If I hand it to someone else to do- I am not permitted to bitch when stuff goes wrong because 'Hey, they were helping you out.'

You can see my delimma now.

grrr.

This only underlines the phrase "Suck it, Cancer."

Back to Life

2010-08-25T11:50:00.001-04:00

Well- we returned to little 'ol Belpre Ohio Monday evening. New York was everything I had imagined it to be. I know to some of you, going to New York is no big deal. Hell, some of you live there. But to me- it was huge! I've seen the 'IT' cities on both coasts now and I can boast that a little.
It kind of felt like it's were I should've been. When I was in High School, I'd entertained the idea of saving up $500 or so and taking off to LA or NY. I can tell you right now that I don't think I'd have regretted going to NY. I don't know that I'd be a Broadway star... I'd probably be waiting tables still- but who cares? It would be New York!!
We got to the hotel Thursday afternoon (right on the waterfront in Jersey). Saw the Statue Of Liberty Friday, then Jason and I got into Manhattan Friday night- we walked out of Port Authority and the New York Times building was right across the street. We walked most of the way with our mouths hanging open. When I realized I looked like a total dork tourist- I closed my mouth only to plaster on a perma-grin for the rest of the walk. We watched "Wicked" which was awesome! Jason even liked it. Maybe he'll even read the book now.
We had a hell of a time getting BACK to the hotel via bus. Port Authority is confusing as all get out! We got on the LAST BUS to Jersey. I wasn't worried- there's more than one way to get somewhere in NYC. But the husband gets a little freaked anxious when things don't go smoothly. I PREFER things a little interesting. It's how you learn.
Give me a week in NYC alone- I'll have that place figured out.
Saturday we went to Central Park and took the girls for a carriage ride in their pretty dresses. Had a vendor hot dog, then went to FAO Schwartz. We couldn't really get too far past that with all the bags we were carrying- so we took a pedi-bike (or bike rickshaw) back to Port Authority- then bus- then hotel. Room service for dinner.
Sunday- we were toast from all the walking. I ended up in only sandals from Friday afternoon on- ankle blisters were hating on me. We got started late-which I found out is a BAD thing on a Sunday... EVEN in New York.
We took the subway (Jason says "The Sub" like he's all cool- LOL) to Ground Zero. Sobering. You can't really say anything there. You just shake your head a little, take pictures and stare.
We walked around town after that- I actually got to visit a shoe store. Bought one pair. That was the extent of my NY shopping. Guess I'll have to go back for more high fashion. hee hee.

When we got back to the hotel Sunday night- I got bad news from home: Our dog, Boss Man, died in his sleep Saturday evening. He was an old dog, very neurotic and nervous. Every time we left him we were afraid he'd have a heart attack from anxiety. He was staying with a friend of mine and her son. Her son evidently latched right on to Boss and gave him lovins and attention. He was buried right next to my Whirlie Girl on my Dad's property. While it is heartbreaking that we were not there for him in his last days- it is comforting to know that he was getting attention and good care (and roast beef) before he went. And it is a relief to know that he went peacefully. We knew he was getting old and worried that we would have to decide between a $3000 vet bill and poor quality of life or euthanization. I don't like making those decisions. He went the best way I think he could have gone.
Rest In Peace, Big Boss Man. You were a good dog. You and Whirls are missed terribly.

Got back home to more reality Monday night. Laundry... the bane of my existence- really. I have too many "eh" clothes and not enough "WOW" clothes. But too many clothes overall.
Somehow- the girls' room seemed messier than when we left. Probably because I refused to see it and feel the need to clean before we left. No matter.
So after less than 24 hours home I started reviewing the stuff I'll have to do for surgery. Time to crack down on getting organized as far as who will have the kids- who will stay at the hospital with me- who WON'T be there until later- what the hell I'm gonna do in Maryland for a week after I'm discharged and such.
Lots to do... is there enough time to do it?

Being A Part Of It

2010-08-19T16:40:00.001-04:00

A somewhat quick note.
Hoping I didn't make anyone mad with the last post. Really.

We have arrived safe and sound in New York. We've settled in to the hotel in Jersey and took a stroll around the block. I can't upload from my phone or I would show you the awesome location. We can see the NY skyline when we walk out the lobby.
I WISH I could take everyone with me, and I wish I could thank everyone who made this possible for me. You have no idea what it means to me...

Health

2010-08-18T00:31:00.001-04:00

It's late. I can't sleep so I'm watching the Golden Girls.
I've been thinking about a question I was asked yesterday. I've been asked the same question before... quite a few times actually. And people hint to it and such, but I think the out of the blue way it was asked caught me off guard.
While I was talking about the surgery and jokingly saying that while I'm on a ventilator after surgery- it will be freaky. That I may have to do charades (uh, is that how you spell it?) and someone will end up giving me a sed-a-give.(The last video I put in made me think even more.)

I was joking about that scene in Young Frankenstein- when I got THE question...

"Are you SPIRITUALLY healthy?"

Uh. What the hell?
That's kinda like asking me if I'm ready to die. At least that is how it srtikes me.
I'm not often speechless- ask anyone who's known me for more than five minutes. But THAT irked me and stopped me in my tracks. There aren't too many things I keep to myself, but that is one of them. That is between me and one other. None of your damn business, thank you very much.
I get why someone would want to ask- but most have the sense to just keep that question to themselves. Kinda like the "Do you have a colostomy bag?" question. If I want you to know- I will tell you. And there are some people who should check themselves before they go asking OTHERS that question.

I'm good with all that. And I will leave it there.

It's funny... the comments and questions I get- having cancer, and being 'terminal.' But shit. What really gives someone the set of sparkling brass balls to ask a terminal cancer patient that question?

Countdown.

2010-08-16T10:00:00.002-04:00

3 Days to New York. 31 Days until MOAS.
Guess which one I look forward to the most?
It's a shame that both couldn't be wonderful things. Hm... If I reframe it- The surgery is a wonderful thing. It's just a necessary step to take to make things wonderful. Kinda like going to college: putting up with cruddy teachers, homework, sleepless nights, tests and so on to get your degree so you can do what you want. You gotta pay the piper ahead of time I guess.
I must've only put in a down payment and now have a balance. That will be evened up shortly.

My oldest is now officially 4 years old. We had her party last night. Did I get pictures? No. Dammit. I was doing my headless chicken imitation. Hoping enough people around me got pictures and will be nice enough to send them to me. My Aunt Mary was all about making it a big party. She put on the dog for us. (Thanks Mary) Mom, Micki and Misty were LOTS of help. Iris had a blast. I know lots of people don't see the need for a big party for a kid but she really was happy to see everyone there. Plus, it's over the summer and she was WAY lonely- she talked about all the kids she saw there all the way home and through the bedtime routine. I like big parties. Evidently so does she. My only worry is that invitations may be seen as 'present greedy.' But it's not like that- I just figured we had an entire pool for kids to play in... it was paid for, so why would you NOT invite everyone you'd think would have fun? So that's what I did.
I did't get in. I don't know that I will be donning a bathing suit in any kind of crowd ever again. I'll reserve that beautiful sight for immediate family and good friends. (It would actually be more appropriate for enemies... cuz it's more like a punishment than a privilege.)

The Fam leaves for New York on Thursday. Me, the Hubs, the Girls and the Mother-in-law. I am STOKED! I've bought tickets to see "Wicked" on Broadway, Friday night. Have no idea what I'm wearing. Hell- we'll be flying by the seat of our pants the entire weekend. Of course we have specific destinations, but then we have to 'plan' for the unexpected. I don't like a strict itinerary... I may decide to stay in one place longer and may leave another WAY early.

When we get back...it will be a whirlwind- getting the downstairs ready for company. I'm hoping that I'll have a houseguest over Thanksgiving. But before then I may be needing extra help with the girls but I don't want to ship them off all day- every day. It would be nice to have someone to wrangle the girls with me when Jason does the yardwork and such. The Dungeon is a mess and I either need to clean it up or I need to build a wall so that people coming into my house can't look directly at the mess in the den. Hmmm. A wall just might be easier.

I am kind of in limbo at this point. I worry about not being on chemo until surgery. I look at the number of days I have until surgery and it scares me. I am down to 2 pair of pants that fit comfortably. 31 more days. At the same time though, that's a lot of time to get healthy. Baby steps.... I made the mistake of getting over-ambitious with my walking goals. Now I'm sporting a blister on my heel. Poo. And boy, did I hurt the next day. BUT that's not going to be an excuse. I don't want to hurt after walking... Sore GOOD- Hurt BAD. (in my best Frankenstein voice)

Hey- gotta get in walking shape for New York- right? And I don't see any reason to stop after that.

It's a good day. Gonna be a good week. (The exception being the 2 hr plane ride- eek!)

I'd like some cheese with my whine.

2010-08-11T10:01:00.000-04:00

This is kinda "The Month Off." In more ways than one, really.
Off Chemo- temporarily. And I feel off.
I think it's the anxiety of the surgery. Since I've had a total of 5 abdominal surgeries (2 cesarian sections, 1 hemicolectomy and 2 POS IPHP surgeries) in my life, I can say with certainty that this surgery will suck. Suck BIG TIME because when I had the c-sections I thought those were bad. Then I had the hemicolectomy- THAT sucked. Then the POS, unnecessary, just want my insurance money, practice surgeries sucked even worse.
Dr. Sardi said that those would basically PALE in comparison to the REAL HIPEC surgery.
He said to exercise, smile, take multi-vitamins and 1g of vitamin C to get ready.
I'm just going to be honest with myself. I'm fat. I'm either lazy or tired. Or both. I need a Jillian Michaels to get in my face and talk shit to me to motivate me. I see workout time as selfish, but not selfish if it's improving my health. The days go by so fast and before I know it- it's been forever since I've done anything active. I was putting in a real effort to get healthy after having Vera in December of '08. I had actually started to like jogging. Knocked out of that game by diagnosis/surgery. From there, it was all downhill. Chemo, more surgery, more chemo, little break, another surgery and more chemo. MIND YOU- I gained 30lbs on chemo. I've been off chemo for a bit now. I still taste it. I still get nauseous. I still wretch at the thought of the FEEL of it and at the idea of those disgusting "lunches" they provided for chemo patients.
To say the experience has been traumatizing would be an understatement. I'd like to be around long enough to see this chapter of my life as the "Bad Year(s)." But that really isn't fair to my kids, is it?

"Yeah Vera, the 2 years after you were born totally sucked balls."

I don't know that I would put that in her baby scrapbook... if I ever got around to putting one together. But if I did- they'd probably make some cutesy decals and paper with frownie faces and IV poles right?

Not really fair is it? That she got the crap end of the deal. She gets all the hand-me-downs and a sick Mommy. At least Iris got the best of me for a couple of years. Not that she'll remember them. She'll remember me being sick. I'm just hoping that will spark her interest in becoming a GREAT doctor. Not like the shit one I got stuck with.

It kind of bothers me when people say "Well, you LOOK good." I know I've said it before, but I've heard it a lot lately. What they mean is "You're fatter than I thought you'd be." or "Isn't chemo supposed to make you LOSE weight?"

If one did't know I had cancer- they'd just say "Woa! She's Fat!" But I get the "Look Good" pass because I have cancer.
Can you tell I woke up feeling sorry for myself today? I think it all started with looking at pictures of me that were taken over the last couple of weeks and noticing just HOW fat I've become. Not that it's a beauty contest- but dammit- I'd like to feel good about myself in ONE way. Isn't that part of your mental health? If my insides look like hell- at least the outside could be to the contrary.

Just had to whine.

The Mother Of All Surgeries.

2010-08-08T01:39:00.000-04:00

I won't say the title doesn't scare the living shit out of me, because it does.
But I've got a date anyway. So I guess I will hear how brave I am or something. I'm not brave and I can't figure out how the hell I inspire anyone just by getting up and doing what needs to be done. And some days I don't even do that. Don't get me wrong- I WANT to and I'm working on it. But it's humbling and more weird than anything else to hear that I would inspire anyone at all. I'm much more used to hearing how I made someone laugh- that's not inspiring- I mean, it's NICE to make people laugh. It makes me happy to do that. There's nothing better than soomeone genuinely laughing at you being funny on purpose (so that is laughing WITH me, right?). I'm SOOO not used to people being all serious around me. I don't quite know how to respond. I kinda give an awkward smile and say thanks. What else do ya do?

And since you can't tell me to shut up and get on with it, I've managed to get off track within the first 5 sentences of this post.

Sorry about that.

ANYWAY- I do have a date set for the MOAS. September 16. Only 2 days later would have been the fly date for Italy. Instead I will be on my ass with tubes hanging out of me and hopefully under some SERIOUS medication. And actually September 18, 2009 was the date of my first POS (Piece Of Shit) surgery. Otherwise known as IPHP or the POINTLESS surgery. And YES, one day I will get over being bitter but not anytime soon.
I was happy to finally meet THE Dr. Sardi. He seemed to be on top of things and seemed to genuinely care. He said he will be testing my cancer against a variety of chemotherapies to see which it responds best to- and he will use THAT chemo to do the wash. Makes sense to me. For those of you who don't know much about the surgery- It's a 10-18 hour surgery, I will be in the ICU for a day or two, I will be on a ventilator, I will have a catheder, an NG tube and probably a few other tubes for various purposes. The hospital stay is typically 10-14 days. Dr. Sardi said it will feel like he's run over me with a truck... twice. And hearing from others who've had the surgery- it's about right. Woo. Hoo. But at least he's honest. I don't want to go on and on about him because I don't really trust myself anymore. I've shown nothing but poor judgement in picking doctors. The last smart pick was Dr. Cook- my PCP and my daughters' pediatrician. That was 4 years ago. So with all the brain cells I've fried I am trusting those around me to help with decisions.
My sister has been there for 98% of doc appointments and surgeries. She's asked questions and I should have listened to her- or at least turned her loose on Dr. Arnold. (I can think of a lot of people I'd like to turn loose on him.) And I wish I could just take her with me to all my appointments because she's kind of like the voice of "What the Hell?" instead of the shrugging of the shoulders and saying "hm, whatever you want, Doc." when it comes to me- but isn't so aggressive when it comes to her- so I try to be that when she needs it. I was glad she went with me to Baltimore. I hate that I can't trust my own judgement now. I hate that I took up for Doctor Arnold because I THOUGHT he was doing all he could for me-- of course I thought that I wanted to be a ballernia when I was 8 too.
bah! Shut-UP, Rachel.

Anyway- Dr Sardi will be just getting back from a conference in Sweden about the HIPEC, I believe. AND the following Sunday a walk will be held in Baltimore to raise money for and awareness of the HIPEC. (http://www.firstgiving.com/heatit) Odd coincidence. My girls are actually going to be there for the weekend and will be participating in the festivities. I'm still trying to hammer out the logistics of who will be there and when and who will be taking care of the girls and so on. That ALONE is stressful enough.

Until check-in on September 15th, I get to be there and have fun at Iris' birthday party, go to New York for the first time in my life, check out the Warren/Belpre football game and do a few boxing workouts.
My stomach has never looked worse- My self-esteem is on the fritz.... feeling fat and hideous. I want to lose a ton of weight but will have to just aim low because docs don't want me dropping pounds. Kinda wishing someone put me on a strict diet.

Oh- did you catch the New York part? A friend (and many others) has done a bunch of legwork getting me a dream trip to New York with the family. Statue of Liberty, Coney Island and a carriage ride through Central Park for the girls. Time to buy a couple of tiaras.
I am humbled by the kindness of others. I found out that people I know, people I kinda know and people I DON'T know were all conspiring to get me the New York trip I'd been wanting. Yes. People I DON'T know. It's freaky, overwhelming, humbling and amazing at the same time. I can really only hope to pay it back by paying it forward. I hope that the shit I stir to get hospitals to be more accountable and easier to deal with will benefit someone in the future. (And that is just the tip of the 'stir' iceberg... beware)
I don't think of myself as socially awkward, but I haven't fiigured out an elegant way of being on the receiving end of charity. It's been over a year and I still don't know how to NOT be awkward when someone wants to GIVE me something. I always find myself thinking I should have done something different to say thank you when speaking with someone. ugh. I don't ever want ANYONE thinking I'm not grateful- because I don't know how to properly convey my gratitude except to say "Thank you." a million times. Just know- I don't say stuff I don't mean. And those 2 words are the most sincere words that come out of my mouth. I put "Thank you" right up there with telling my girls "I love you." Yeah. It means that much. It may roll off the tongue easily and some people throw both phrases around like nothing, but those are the 2 most important phrases in my opinion. Don't say them if you don't mean them.

That being said: Thank you all for reading and caring. It means more than you know.

Great Break

2010-08-02T11:35:00.001-04:00

I had a fantastic weekend with a few old friends from my Navy days in Fallon, Nevada. It was so great to see them and to sort of forget about the cancer or at least to not worry about it for a while. You never really forget you have cancer. It's not like putting your sunglasses on your head and looking around the house trying to find them before you look in the mirror and realize where they are. Nope- you can't shake that one. BUT you CAN not care about it for a day or two. It's a nice mental break.

We visited some antique stores on Friday and the WWI Museum in Kansas City on Saturday. Other than that we hung at my friend Karen's house and talked, drank a few and watched old videos. (I forgot how totally gross the guys were... too funny.)
It was really great of those who did make it to come. I know it was a lot of work and money to get there. I'm hoping that with a year of advanced noticed- next year's reunion will be bigger by a few people. Karen said my only job until then is to stay alive. I'll do my best, Karen.

In the meantime... surgery. Another. Damn. Surgery. Hopefully it will relieve the swelling belly. In more ways than one I'm sure. Not eating AND removing all the friggin' cancer mucous in my abdomen.
Over the weekend we (or I) invented a new concept called "Nad Rules." Nad is the cat I had in Fallon, Nevada. I had him for a while when I was living with Karen and when I got transfered to Corpus Christi, Texas I couldn't take him with me. Karen still has him- 13 years later- and he looks fantastic. Plus he's one of the coolest cats I know. ANYWAY... He really enjoyed jumping on the pool table to lay down. Well, we were playing pool. So I said "Nad Rules" we play around the cat and whatever he does with the balls is totally legal. If he sinks the 8 ball- HE wins. Somehow it became a term for doing whatever you want or changing the rules to whatever, whenever. So if I use the term- you've all been schooled.

I'm leaving town yet again tomorrow. Setting off for Baltimore and meeting Dr. Sardi. My sister and I head out for the 5 hour trip around noon and staying with a friend. I should get a go date for surgery. And HOPEFULLY it will be soon. The Secretary told me he is scheduling into September... LATE September. That would mean I'd have to go back on chemo. I really hope he will see me as urgent and work me in EARLY!!! (Nad Rules) Like NEXT WEEK early.

When I know- so will you.

Short update

2010-07-29T09:21:00.001-04:00

I titled this post before I started typing- I'm not changing it no matter how long this post ends up being.
I SHOULD be doing something more productive than this blog right now but had to give an update.
I am busy with paperwork, chores, packing, being a mommy, being a wife, an air talent (for what it's worth) and so on.
I've packed and am MOSTLY ready to head to the airport for Missouri. Leaving the house at noon. Plane leaves @ 3:40. Starbucks is screaming my name! I'm excited to see my navy buddies. Only a few can make it- but it will be fun, none-the-less.

Today I need to make a couple of phone calls to get my pathology slides to Dr. Sardi in Baltimore (with whom I have an appointment on Wednesday then HOPEFULLY scheduling my MOAS). I have to call OSUMC to get them though and I think my name is one the 'tainted' list because of what I've said about them here on this blog. They never did fax my records to Dr. Sardi (that I am aware of) even with the "ASAP" put on the request/release form.
I ended up calling my personal primary care provider's office where it's my Doc, her nurse and the secretary. It's WAY more personal and I KNOW I can rely on them. I asked Brooke to contact OSUMC to get my records faxed to HER so I can have all my stuff centralized and get copies for myself. They will fax whatever I need to whoever I need them faxed to. Plus, she id digitizing my records. Yay for technology.
So I will have the rest of my records sent to Dr. Sardi and Dr. Nemunaitis in Dallas. My uncle suggested him because he is in cancer research. Things like gene therapy, cancer immunizations and so on. So I'd imagine a visit to the Lone Star State is probably in my near future.

I was happy to get the phone call from Dr. Sardi's office. "Dr. Sardi thinks he can help you and would like to meet you."
That's music to my ears.

Dancing To The Rythm Of A Ticking Clock

Happy Birthday - (guest blogger - Micki)

Thank you (Guest blogger - Micki)

for my Sister (guest blogger - Micki)

Service & Travel information (guest blogger - Micki George)

Obituary - (guest blogger - Micki George)

End of a Journey - (Guest blogger - Micki George)

No more hospitals (guest blogger - Micki George)

back tracking (guest blogger - Micki)

Thanksgiving update (guest blogger - Micki)

Time for Giving Thanks (guest blogger - Micki)

little things are not so little (Guest blogger - Micki)

For my lil' sister (Guest Blogger - Micki)

If Only...

Who Beats Cancer? (Guest Blog Post - Rachel's Friend Cindy)

Shortness.

Here's The Update

What Seemed To Be The Downward Spiral.

Guest Blog Post (By an Old Friend of Rachel's)

Now For The Next Chapter

On To The Next "Hope"

Gotta Get Better Than This

Was That Necessary?

As Expected

A Thinking Problem

Back to Life- Back To Reality

Naples... You Can Keep It.

Pomp-Yay!

Bonjourno

Off To Italy

Last Shot....

Gotta Get With It

Post Relay

Excuses and Thanks

Scans and Round 4

End Of An Era

Get On With It

Did I Invent A New Word?

What Next?

Aware

Word.

Round 3

What a pain in the

Sometimes There Are Things Even *I* Don't Talk About... BUT

Iron Maiden

Texax vs. Appendix cancer- Round 2

Coming up on Round 2

Feelings... Nothing More Than Feelings...

Moving Along

A Better Day

It would stand to reason...

One Week Later~~~~

It Has Been Done

I'm here.

Down Time= Not So Down.

Quickie

Rachel and TX vs. Cancer- Part 4?

A Glimmer... I Guess

Bad News

At Random

I have a date... I don't think he's paying for dinner though.

On With The Show

I don't even know where to start.

News

A Week To Remember

Post-Holiday

Part... uh, whatever.

Part 3

Texas and Rachel Vs. Cancer Part 2.5. "Yes we Can, Sir"

Texas Part Two- The Flight

On My Way

Hold the phone.....

Texas and Rachel vs. Cancer Part One

Thankful

Now we wait.

Getting Into It.

Long Day

Thinking

According to plan

The Itchy and Scratchy Show

Sometimes There Are Things Even I Don't Talk About... BUT