Friday, February 25, 2011

Feelings... Nothing More Than Feelings...

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.

Tuesday, February 22, 2011

Moving Along

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.....

Friday, February 18, 2011

A Better Day

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.

Wednesday, February 16, 2011

It would stand to reason...

..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 ( 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.

Monday, February 14, 2011

One Week Later~~~~

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.

Tick tock.

Tuesday, February 8, 2011

It Has Been Done

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.

Monday, February 7, 2011

I'm here.

I am sitting in the waiting room for the Mary Crowley Cancer Research Center at Medical City Hospital in Dallas.
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.

Saturday, February 5, 2011

Down Time= Not So Down.

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.

Wednesday, February 2, 2011


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.

Tuesday, February 1, 2011

Rachel and TX vs. Cancer- Part 4?

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.
Whatever it takes.