Short update

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.

busy

Time seems to fly just when I don't want it to. The last 2 weeks seem like a blur. It's almost August and it's almost GO time. No, I don't have a date for surgery or even who will be doing it. I would imagine that if Dr. Sardi takes me- Ii will go with him. Hopefully he will be able to navigate amongst the scar tissue and mucous and possibly avoid a colostomy bag. Yes, Yes. I know. At least I'll be alive. And that's all I'm going to say about that.

So I was in Cleveland on Tuesday and Pittsburgh Saturday. Totally different reasons. Thursday night Iris spent the night at Micki's (my sister) and then decided on the way back from Pittsburgh Saturday evening that she wanted to stay there again. Which makes me happy- a little sad because it's a night away from her, but I like seeing that if anything happens to me that she's got a bond with Micki. I hope Vera has the same bond with her. We visited my Dad this evening he took Iris for a ride on his new mower- she might as well have been on a camel, she was gleaming! I love that the girls adore him.

This week is going to be hectic. My co-host (the main guy) on the morning show is off for the week and I will be flying solo there. Then helping out with Iris' Vacation Bible School- then boxing Tues and Weds to get the frustration out. Yep- Fat Girl Boxing. Well- just the training. I don't think it would be particularly wise to get in a ring with my messed up midsection and no omentum fat. But the workout will do me good.
THEN Thursday I'll be flying to Missouri for a 'reunion' with my Navy buds. I am looking forward to it... people I haven't seen in 13 years!

And even though I'm not dead- THEY haven't forgotten about me.

Smiles.

An Inconvenient Cancer

I will start by asking a question... Isn't faxing medical records, no matter HOW thick your file is, to specialists at the request of a patient part of being a medical office? Just asking. I would think there wouldn't be any problem with the Strecker Cancer Center faxing records to a surgeon or a MILLION surgeons so I can choose who will give me a much needed surgery. But I got a call yesterday asking me what particular records I wanted faxed because they couldn't send all my records because my file was so thick. Or to come up and get copies of my record to fax myself. Hmm. Maybe my file is thick because I have a cancer that hasn't been controlled yet and I need more treatment. What a novel thought.

I know I do sound like a total bitch now- I'm usually a 'go with the flow' kinda girl. I only stir shit when I feel it is extremely justified. I swear. This time- it just got under my skin and it took a lot not to go total bitch when I was addressing the issue.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My faxed letter went like this:

To whom it may concern:
Please fax any and ALL of my medical records ASAP to Dr. Sardi at XXX-XXX-XXXX.

And please mail any and ALL of my CT scans ASAP to:
Dr. Sardi
XXXXXXXXX
Baltimore, MD XXXXX

and
Dr. Chalikonda
XXXXXXXX
Cleveland, OH XXXXX

and to me
Rachel
XXXXXXXXXXXX
Belpre, OH XXXXX

Thank you.
Rachel
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Now it COULD be that I was using too many X's(har har) but she said, "you don't have a fax number for Dr. Chalikonda."
Yes, I know.
But not like she was going to fax my entire file to him either because I was asked to select which files I wanted them to send because my file was so thick. Dr. Chalikonda only needs my CT scans because the disc I was given to take to him didn't have my recent CT scans on it... only the CT I had in May of '09 before diagnosis. (another screwup) I hand carried my other records.
hmmm. Any and ALL didn't mean anything I guess.

I'm losing my cool with anyone who gives me the slightest amount of guff over this shit because it's not hard to comprehend. And it's no fricken skin off anyone's nose to fax a big file. No one is going to get a pay cut to make up for the paper costs. It's a couple of extra minutes. Sorry if my cancer is inconviencing ANYONE in the medical field. Damnit!

I'm learning as I go. I will have all my files in hand AND have files at my physician's office. She and her staff seem to be the only ones willing to do whatever it is I need done. (Thanks Teri, Jamie and Brooke)

As I open up my naive eyes, I'm seeing that you have got to be in EVERYONE'S ASSES to get what you need or want done. I'm not used to doing that to anyone other than my husband, kids and younger siblings.

Hell, I can't even haggle in Tijuana. I looked like a sucker because I'd pay tag price for whatever I wanted there. My friend Karen gave me crap because I paid $20 for a hand carved marble chess set. She swore she could get them to come down to $12.

I'm going to have to turn on "The Bitch" for people to respond just like I would if it was one of my daughters in this situation. That's how I've got to approach this. I wouldn't take any shit if people were dragging their feet getting stuff done for one of my kids- so I shouldn't take any shit if people are doing it to me.

It's exhausting.

So, if this was turned into a book... this would be the angry chapters.



p.s. Hello San Antonio.

I'm thinking about taking up boxing. If I'm gonna get beat up- I might as well be able to hit back.

Not done yet.

I spoke with Dr Chalikonda today. I think he's interested. He's done around 140 of the HIPECs. But again... a ball was dropped when I gave him my CT scans from Marietta Memorial the only scans on it was the first one I had... PRE DIAGNOSIS. Now I've had AT LEAST 5 effin' CT scans. 3 of them at Marietta Memorial. One in May of last year, one from May this year before I started FOLFIRI and one from LAST THURSDAY! The last two were not on the disc.
Did I mention that I forgot the disc at home and didn't realize it until we were an hour from home? I turned around to get them and got back to the 3 hour drive. Only to find out the disc was damn useless.
So, though he seems interested, he couldn't tell me anything like "Yes, I can treat you. We can do this, this and this." until he see some effin' scans.
What the Hell? Am I just destined to be an example of what not to do? One of those- 'If Only...' stories.
I THOUGHT Dr. Arnold WAS a specialist when he was treating me. I thought I was getting the HIPEC surgery. Hell- Doctor Goodman said plainly... "I've never heard of anyone doing that procedure." after I told him what Dr Arnold did.

DAMMIT!

Are the stars EVER going to line up for me? It's so hard to be proactive when you can't concentrate, your brain is fried, you feel like the whole world is on your shoulders and you're lost half the time. I wish I had a little birdie on my shoulder that had all the answers. "Raa, make sure all the scans are on the discs. Raa." "Raa, your surgeon sucks. Ra" "Raa...This guy is the one.. Raa." "Now gimme a damn cracker."
That's an idea.
At the PMP Bellybuttons Club page I was getting hounded by some lady who was basically calling me a liar when I told her what I'd been having done. (one reason I abandoned the site until recently.)

Anyway- it is VERY possible I will be coming out of the HIPEC surgery with a colostomy bag. Hmm, that's SUPER! Can't wait for THAT! What 34 year old woman wouldn't feel complete without a bag of poo hanging off her stomach? News just gets better and better. I'm certainly NOT putting down anyone who HAS one, but seriously- it can't be fun. That being said- choosing between death and a colostomy bag.. the choice is easy. Gimme the bag, thank you.
Dr. Chalikonda also said that the odds of getting all the tumor out after 3 surgeries aren't good. Thank you again Dr. Arnold. Oh, and that doing the Chemo infusion without removing the tumor... pointless. I don't think a chick with a simple 2 year degree in Mass Media from a community college should be cluing you in on that. Just saying.

I guess I will be the inspiration for others to do their homework. And in the meantime hope that my screwups haven't cost me years of my life.

Next for me. Dr. Sardi in Baltimore... MAKING SURE HE GETS ALL MY SCANS and all my records before I drive 5 hours to see him. I was told that he usually schedules surgeries 4 weeks out.
Of course- by now I've realized that i really don't have any questions for Dr. Sardi except for "Will you treat me?" and "when can you do it?"

Regrets, I've had a few.......

Tired of being Optimistic.

Kind of appropriate that this is my 100th post...........

It's been over a year since dignosis. Approaching one year since the start of the hell that is chemotherapy.
In less than 18 months I've had 3 major surgeries, 1 minor surgery, almost 2 months total in a hospital, 18 weeks of recovery, an endoscopy, a colonoscopy, 5 CT scans, 15 rounds of chemotherapy and endless needle sticks.
To this point I was trying to be a little PollyAnna and trying to be totally positive- taking up for anyone doing my treatment.

I really didn't want to believe that someone might be dropping the ball when it came to my treatment. It would piss me off to hear "Do they know what they're doing?" Because 'Of COURSE' they know what they're doing. Why on earth would I be here getting sliced and diced? Surely not for the fun of it. And Don't Call me Shirley.

The reason this is all pouring out now is because it's like a slap to the face... a cold shower... a shot of double espresso... I'm going to miss out on a LOT of shit I had planned because I put my trust in someone who didn't deserve it. I should have asked more questions. I SHOULD have taken a page from my almost 4 year old's book and asked "Why?" about a million more times than I needed to. Why were people diagnosed AFTER me getting ONE MOAS and I was getting the 'Diet' version of it... TWICE?!? I can promise you next time I go to OSUMC, I'll be taking a shark with me. (Amber) And I'll let HER ask the questions... I'll be taking notes. I'm tired of being intimidated by big shots. Tired of just going along with whatever anyone wants to do to me in hopes that SOMEONE will eventually have the right answer. Cancer patients BEWARE.
I REALLY thought I was getting top notch care. That the lack of answers was because this cancer was tricky and rare and blah, blah, blah. Bullshit.
There were answers, there ARE answers and there are more answers than "You should look into clinical trials."
Thanks for screwing up my body to the point that all the scar tissue may cause complications with the surgery I should have gotten a year ago that I will be getting soon. I'm sure it will be good for my HEALTHY insides to have been subjected to chemo washes THREE times instead of ONE or even TWO.

I WOULD have been fine if after the first surgery I was told "You will need a much more involved surgery that we can't do here." Since they pretty much knew that then. But nope- All I was told was "There is too much tumor to remove." Again- BULLSHIT. THERE ARE SURGEONS WHO DO REMOVE ALL THE TUMOR... There was too much tumor for YOU to remove. I know that now.

How DARE you fuck with my life?

To lighten the mood a bit... simply insert my OLD surgeon's name where Clark's Boss's name is....

The Good, The Bad and The Ugly

I talked to Dr. Cawley yesterday.

My CT scan showed that the three 'tumors' (basically clumps of mucous) amongst my small intestine have shrunk slightly since May when I started the new chemo. The layer of mucous hanging out on my liver and other places, no change. OK news.
But, she doesn't think I should wait until October to have the MOAS. She thinks I should have the surgery as soon as possible. Meaning the first of August- 4 week minimum wait after Avastin. That means... No Missouri, I probably won't be present for Iris' birthday party, no New York and probably no Italy.

Honestly, I'm pissed at the world. I didn't want to go on a rant, but if I'd have had the NECESSARY surgery 1 year ago... 4 months ago- I wouldn't be dealing with this SHIT right now. Instead of doing 2 minimal surgeries and not removing the cancer. I COULD have had ONE surgery that would remove all the cancer. If I'd have just known that the surgeries weren't INTENDED to remove ALL the cancer. They don't even do the HIPEC surgery @ OSUMC. The whole time I thought they would remove all the cancer and when they came back to say "There was too much cancer to remove." I thought- "I'm screwed." The fact was: They don't do the surgery I REALLY need(ed) there. That it would be more involved. A year older and much wiser having taken the idiot path. Possibly at the cost of my life. I would like to think my surgeon did all he could do. But that doesn't take away from the fact that he more than likely has heard of the HIPEC surgery with TOTAL debulking before the chemo wash- and he didn't say that's what I need, didn't suggest other surgeons, other procedures, didn't point me in the right direction. Just said I should look into clinical trials. And the Oncologist at OSUMC didn't say shit either.
They SHOULD have realized that they were in over their heads and passed me to someone better able to TREAT ME. I don't know if it's a pride thing or an ignorance thing... Doesn't matter. I'm feeling SCREWED. It's my LIFE and they SCREWED ME! I should get a damn refund and should punch SOMEONE in the friggin' face.
If I'd have gone directly to the Cleveland Clinic or another hospital that HAS the HIPEC, I wouldn't be in this position right now, maybe I wouldn't have had to do 15 fucking rounds of chemo and have had ineffective surgeries.

I'm pissed as hell... And I've held my tongue about it, thinking I didn't want to slam on amy doctors... But this last year of 'treatment' has been a waste because I didn't know any better and the surgeon that DID was irresponsible and not forthcoming with information. Fucking around with MY LIFE is not something I'm going to be quiet about.

Random Ramblings

This week has been oddly normal. Kinda. I'm still tired as hell and I still have a hard time sleeping. Gonna try some melatonin as a friend suggested. I loathe using Ambien.
I got all my crap done for my passport- and so I wait. I actually COOKED a bit. Evenings are tough because I guess I am slow with cooking... or it takes longer than I would like it to because by the time I get the girls home and get dinner ready- it's 7:30 (I know this because Jeopardy is on.. hee hee). Then it's the mad rush to get the girls to eat, then get ready for bed. But it would probably be the same situation whether I had cancer or not. So I embrace the madness. We have been giving the girls showers (I usually just get in there with them) because we can't use our tub- we need a whole new fixture put in because the other one is OLD and leaky and ruining the tilework. So sometimes the bedtime routine is hectic. Thank goodness for my Mother-in-law for giving the girls baths sometimes when she has them during the day.
I emceed a "Little Miss, Mister and Junior Miss" Pageants for the local 'Big Deal' fair on Tuesday. I thought I'd do alright but occasionally got a kid's name wrong. There were 30 girls in the youngest group- I had a paper with their names on it- but I didn't want to be staring at the paper the whole time. Well, chemo brain kicked in and I got a couple wrong on the way out. I didn't think it was that big of a deal but one of the women running the pageant would yell up the stage the CORRECT name at me. By the 3rd time she did it I was ready to either walk off the damn stage or yell back.
Number one- it was my first time in like 5 years doing something even REMOTELY like that... Two- it's an honest mistake even for someone NOT on chemo. But I also forgot to mention another pageant winner that was present and I forgot to make an announcement they'd asked me to do. I realized that as I was walking to my car.
I don't expect anyone to know my story and I'm not going to explain it to everybody but I was nervous enough being fat and up in front of people, but being fat AND stupid was a little much. Keep it together, keep it together. Suck it up Rachel. I fought back tears on the way home- telling myself I was being too sensitive.
Funny thing though- I was so nervous in front of the Judges and organizers of the fair I didn't really get a good vibe talking to them. It was probably just me. But I needed some hand sanitizer and no one there had any so I walked to the National Guard tent to see if they had any and I had ZERO problem talking to the guys there. Not flirting thank you- I'm just more comfortable around guys. I don't feel like they're sizing me up. I'm just there and can converse.
I Digress....
I had a CT scan yesterday (okay, not so normal) it was supposed to be Wednesday but I had it in my head that it was Thursday. I was cringing at the fact that I would have to do the contrast again... barf-o-rama. They worked me in. Not like the CT room is jam-packed in little ol' Marietta, Ohio. I can't say I'm a fan of the taste od saline and the IV contrast. Would be more tolerable if I didn't get it so often.
Oh, I wanted to give a little more detail about the "Not doing chemo." I defintely want to clarify that I'm not giving up by any means. 15 rounds of chemo and 2 chemo surgeries- that's what I've had in less than a year. And all signs point to "Only the surgeries have done any good" and those haven't done much at that. It is DISCOURAGING to endure the sweats, nausea, fatigue, mood swings, feelings of inadequacy, mental strain and so on that goes with chemo only to be told it's doing no good.
I'm not 100% positive it's NOT doing any good, but I don't know that if I could put the energy I WOULD have if I wasn't on the chemo toward eating healthier and being active if that would do just as good. BUT then I think "Well, what would my situation be if I hadn't done any chemo at all?" The CT scans from this week will tell whether this particular chemo has had any effect. There is a ton of research suggesting that IV chemo has little to NO effect on this type of cancer. It's not like other cancers where it's IN an organ or IN the blood or IN the lymph nodes. It's floating around the juices in my abdomen, landing on the outside of the organs. So it's suggested that the amount of chemo it would take to actually have a real effect on THOSE cancer cells would be toxic to the person.
You second guess every decision you make. Will THIS kill me? Will THIS save me? Do I care at this very moment? Yeah, I think that too.
Seeds of doubt. That's all it takes to wreck me. Should I have been a vegetarian my entire life? Would I still be where I am? My cancer is from a genetic mutation... so is it my fault? How the hell was I supposed to know? It's hard enough to know you have cancer and that it may kill you, but then almost every book you pick up tells you how "Colon cancer is the easiest cancer to prevent." Yeah- My ASS. Pun intended. So I did this to myself, huh? They NEVER mention Lynch Syndrome and it's factor to the equasion. It's all YOUR fault and WE'RE gonna rub it in. HA HA!

And on another note... I'm not a fan of the "Medical community conspiracy" to squeeze money out of you instead of using that "Cure to Cancer" they've got hidden away and won't use because cancer is a big money maker. Sorry to anyone who believes this- but it just PISSES ME OFF to hear. So please don't bring it up to me. I know it's a possibility.. however remote.. but I don't want to hear it. I'm not keeping myself in the dark, IF there is a secret cure for cancer- how the hell am I supposed to get it? So on my deathbed I'm supposed to be mad at the entire medical community or the insurance company or the government? I'm not going to walk around- pissed off at the world because there is a THEORY that cancer drugs are SO lucrative that "they" (whoever THEY might be)are keeping the cure from the general population. I put that in the same category as "The Moon landing was filmed in a basment in Hollywood." It's possible... but where is the proof either way? And I could almost promise you that no cancer patient wants to hear that shit.
I have to go with what is available to me.
What and Who is right? Who knows? If I die, does that mean I picked the wrong path to follow? So if I go Vegan and exercise like a fiend and still die, what does that mean?

What's the right answer?

No chemo today.

Because I am a wimp. I so had my heart set on the idea of not doing any more chemo. BUUUUT since my leave date for Italy is September 18, I could actually squeeze in a couple more rounds with Avastin. Surgery will most likely be in October because I'm NOT having surgery before I go to Italy. I want to ENJOY it.
I talked to Dr Cawley today... okay, whined to her. Cried because I didn't want to do any more chemo, because I'm tired and sick and sick and tired of it. I want to be a present mom, not one that just sits and watches movies.
SO, I have a CT scan scheduled for Thursday, then meeting with Dr Cawley again on Friday and will have Scan Discs and paperwork to take with me to Dr Chalikonda. I have watched one of his webinars on HIPEC.

Click it if you wanna watch.. it's about 12 minutes long.

So more decision making next week.

In the meantime, trying to shake the chemo taste in my mouth, making plans for what I will be doing if I don't have any more chemo. I hope, I hope, I hope.
Oh and Publisher's Clearing House says I could be a winner and get $5000 a week for the rest of my life. You think I'm playing along... Hell yeah! My luck will turn SOMETIME!!

Pick Me Clearing House
Five Thousand Dollars Sounds Good
Knock On My Door Please

A little something for Dan... No chemo tonight in my coffee....


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Looking ahead.

The next couple of months are quickly getting jam-packed. That's perfectly fine with me. I will be taking a little jaunt to Missouri for a weekend at the end of this month, will be heading to New York sometime in August and then Italy the first of September.
Will probably schedule surgery for late September. I wouldn't be able to do Italy anytime soon after surgery anyway. My uncle John was heading that direction and invited me along. My big WANT TO see is Rome and the Colosseum and Pantheon. Then The Leaning Tower of Pisa. I'd love to see Venice, but it's a little out of the way.
I'm excited to go. Feel a little guilty that I want to do a lot of stuff solo. It's kind of a zen thing I guess. I just might sit outside a restaurant and people watch for a couple of hours. Do a lot of reflecting in one of the most beautiful cities in the world. (I imagine it is- will let you know :) I don't want to reflect too much. I'm not cracked up about spending the day crying or anything.
Besides- when I get back it will be enough of a wake up call to get the MOAS. Wherever I decide to have it. I can only imagine how bad it will put me on my ass (no pun intended). The last 2 surgeries were only 4 hours and they didn't remove anything but 'samples'. So I'd imagine that if they have to strip my peritoneal lining (something mentioned by Dr. Goodman) that will suck. eh. The whole thing will suck. But a necessary suckage. If my 'expectancy' goes from less than a year to even just 2 more years, it will be worth it. ANY extra time I can spend with the girls is worth it. And the fact that I will have seen New York and Italy will make it even sweeter. I won't be feeling some crazy itch to NEED to go anywhere.

And... Doubt kicks in. Son of a~

Am I over thinking? Or is this normal? Or both?
I just scheduled an appointment with Dr. Chalikonda at Cleveland Clinic. They have just recently started doing the HIPEC surgery there. Am I looking there because it's the #4 hospital in the country or because it's 3 hours away? I've heard good things about it's cancer research branch. I want another Doctor to look at my records. I'm wondering why the MOAS wasn't suggested by my other surgeon. I want to get more than one doctor that thinks I'd be a good candidate. So why not? Right? Maybe? Shit. I don't know.
I have a good feeling about Doc Goodman- don't get me wrong, but how do you KNOW which doctor to go with? What If I get a good feeling from this other doctor too? What do I base my decision on? This is my LIFE we're talking about- so geographical location shouldn't matter. But does it have a bearing on my decision subconciously? WTF? How can I be so stoked one day and then on the fence the next? One thing is for sure: I'm not doing any more chemo. I just can't. I truly believe I need the MOAS and I need to be in the best condition I can be in before GO day and I simply can't do that when I'm sick and tired all the time from chemo. I'd rather swallow glass.
What the hell am I doing? Sabotaging myself?
The earliest I could get in to see the new guy is July 20. Gotta get records to him in the meantime. It was harder to get where I needed to get with what I was wanting talking to Cleveland Clinic. Is that bad? In the big scheme of things does it matter? How the hell do you pick the right doctor to do a huge surgery?

To rest my mind... a Haiku:

Too much to process
Maybe I'll pick some flowers
Cancer sucks on toast

2 in one day! Inconceiveable!

I feel a little like Roscoe P. Coletrain... Good News, Good News!
All geeked up.
My "Danger Zone" ringer went off this afternoon.
Dr. Goodman called me. He said he thinks I am a great candidate for the MOAS and said that when I am ready to schedule- to call the office. I told him that I have been doing the FOLFIRI chemo with Avastin, so it would be at least 8 weeks from last monday before I could have the surgery. He suggested I stop the IV chemo all together to be totally 'healthy' for the surgery. Of course healthy, aside from the cancer and all.
SO- Hooray for no chemo for now. Hooray for a fighting chance. The first I could have the surgery is August 23. I'm mulling over the dates for now.

THAT's my good news. I wanted to jump through the phone and hug him.

No rest for the blah, blah, blah

It can be hard to find energy these days. Chemo sucks the life right out of you. But I can't NOT do it because at least it's doing SOMETHING instead of nothing at all.
I've taken to just chomping on gum (which I have the horrible habit of smacking it without thinking- my sister HATES it) to keep the chemo taste outta my mouth.
Had a great weekend. Stayed at a cabin at Salt Fork State Park with the in-laws. Sounds like a nightmare if you don't like your in-laws... but I happen to like mine. Iris got to play with her cousin Ava (and get in a wicked fight... well it was more humorous to me) and make up to keep playing. I got to visit with my sisters in law Inga and Jackie. Love both, but don't see them near enough. Inga lives in Pittsburgh, but Jackie only lives about 15 minutes away from me. There's just too much going on in day-to-day lives you know? And you kinda tend to stick to the circle of friends you've had forever. We just seem to intertwine on a family basis. Which is fine- I'm glad she's there to talk to. My Mother-in-law is great to talk to also. Weird, huh? I'm just lucky to have in-laws that I like. Makes my family bigger.

Today I'm in the process of making phone calls to Dallas and Boston. Doc Goodman finally has all the stuff he needs to talk real to me about treatment options. Janet-Marie (his secretary) has called me enough times that I have designated a ringtone SOLELY for his office calling me. Wanna know what it is? Sure you do! It's the instrumental beginning to "Danger Zone" by Kenny Loggins. Why did I pick that? I just KNOW you're asking yourselves. The big question of the day! (Boring Navy story Alert) Well, when I was in the Navy- I worked on fighter jets. Not F-14's, but a better F/A-18 (hee hee)... still, working on fighter, bad-ass planes warrants liking a cheesy- inaccurate Hollywood take on military 'stuff.' And admittedly, I was a goober for 'Top Gun.' Sadly, I never got to work on a flight deck, but I did that crappy work on land.. in the desert. So here is the video... you can't help but get pumped a little by the intro- right? I try to stay stoked about getting another surgery. (and to be honest- I'd rather have another surgery than do even one more round of chemo... that's how much it sucks.)


So I've heard it once today... next time I hear it- it will be Doctor Goodman. I've got to get paperwork to Mary Crowley Cancer Center in Dallas next.
Gotta to the release forms- AGAIN. bah. I loathe paperwork. Just wish I could sign ONE paper and then make a phone call with a password to say "Send my records HERE." instead of faxing crap back and forth. I have a terminal condition, why on earth would I care if someone looked at my records? Maybe someone will stumble across them and know the cure. I'd like to have them published on youtube and become the next biggest viral video. I could care less if people read about my BM three days after surgery. If I had to tell the cute PRN guy about it- I can just put it out there for the world to see. I say the more awareness, the better.

Today's Haiku:
Open my belly
Scrub my guts, make me better
You Da Man, Doctor

Readers...

I got a call yesterday from The James Cancer Center at OSUMC. Weirdest thing- it was the Patient Relations people. (For the life of me, I can't think of what the actual department is... chemo brain) Evidently, someone there reads this blog and brought it to their attention about the delay in getting my paperwork to the Doc in Boston. They called to make sure the problem was resolved. I didn't want anyone getting in trouble, I just wanted my stuff taken care of. I was going to have to call in again for my CT discs to be mailed, but the lady I talked to said she'd take care of it and call me today. Nice.
And since they are probably reading THIS- I wanted to say that overall, my experience at OSUMC James Cancer Center was positive. I liked Dr. Arnold (and staff) I think he was very professional, but he was hesitant to give me a real prognosis which was frustrating- I do understand why he didn't though. There aren't many guidelines for my particular type of cancer, so there isn't really a true prognosis. I think he did all he could do for me. I know that the hospital doesn't do the MOAS yet and from my research- that's what I need. I especially loved the nursing staff on the 9th floor of Doan Hall. They were all wonderful. I've really only had issues with the sharing of records and with the Oncologist I saw last year- who is no longer there anyway.
So- Thank you James Cancer Center.


I am still amazed at the people who read this blog. I look on my map and see that someone in Arizona is here a lot and someone in Hungary visits often. I know there are more I am unaware of. I wonder what this blog does for those who don't know me. I wonder if it helps them get insight on how one person copes with the diagnosis because they are close to someone who has cancer and wants to better understand THEM. I wonder if someone is reading this for research. I wonder if there is a doctor reading this that is thinking to himself "I want to fix her." So curious.
Until recently, I had ZERO idea that my uncle reads this. Though I am thankful that he does because I just might have a fighting chance through some avenues that I didn't know existed.

As for me today... I am sick. Side effects from this chemo are brutal. Nausea is never ending. I taste medicine constantly, my guts are yelling at me all the time. Loudly. Soon I will give them their own air shift since they like to talk so much. I am tired and very cloudy. I feel stupid. I can't remember names, faces, conversations and such. Must really be annoying for those around me.
I'm really not as tough as I'd like to think I am.

My Haiku:

Scars on my belly.
Never wearing bikini.
But I shaved my legs.

Off with the Fannypack

I get this POS fannypack off today- hooray! In the meantime, side effects are kicking my ass. Nausea is constant, intestinal distress and a little fatigue. My hair isn't very pretty- I still have plenty- but it's dull looking and just blah.
I'm attempting to manage nausea during the day with some ginger candy chews my sister found in Athens, in the hippie section of Kroger. Fine by me!
We're going to the lake this 4th of July weekend, getting a cabin with the Greenwalts. Should be fun, as long as the side effects give me a break.
On the other vacation front, I think the fam and I may be headed for a week off sometime soon. Thinking New York- thanks to a couple of friends... one I've never even met. Crazy right? I'm constantly amazed by the generosity of others. I feel like I haven't even scratched the surface of paying it forward.
I will keep trying.

I am excited to see what other leads on treatment may hold. Hoping to be elegible to participate in clinical trials for new 'stuff'. My uncle has pointed me in a new direction- a new world of options I didn't know existed. It's frustrating to think there are these new treatments, but you have to DIG so hard to find them. Would I have even found out about them if he hadn't mentioned them? Grr. I'd hate to be on my deathbed and just find out "Oh, if you'd only done THIS..." B.S. I say. There should be booklets for different stages of cancer and different treatment options for what you have and a LIST of WHERE and WHO that may be able to help. If it weren't for the PMP lists and my uncle- I'd be shouting into the nothing-ness, hoping SOME doctor, SOMEwhere can hear me. Hell, I'd even considered putting my story on video and uploading it to You Tube in the hopes that someone would see it and tell some that knew someon that knew someone that might know what to do.
It's a tangled world of what do I do now? Which treatment is best? Who is THE best doctor? How do you make that decision? What if you went to the OTHER doctor? Would he or she be able to "fix" you if this one couldn't? Does it matter? Who do I listen to? The people who have been there? My gut feeling? The doctors that suggest?
Like I don't have enough doubt in my head already. I'm so afraid of making the wrong decision- and ultimately paying for it.
What to do, what to do?
Pfffft. I have laundry that needs done- Think I will concentrate on the fact that my hot and cold water lines are crossed... must fix that today. And have a nice glass of wine tonight. The cheap kind of course. Nice bubbly Lambrusco should do the trick. In celebration of detaching from this damned Fannypack.
Another Haiku (The idea of haikus inspired by Cindy Myers.. Thanks lady)
Suck it Fannypack
You're really no fun at all
I should Bedazzle

I'm waiting on a couple of doctors to call me today to say they are REALLY interested in me and want to do all these new, innovative, cutting edge procedures on me... free of cost. har har.

Heard from Dr. Goodman's office yesterday- they have everything but CT scans. So he should be calling me by Friday. they said to call them If I haven't heard from him by then.
Also waiting on The Mary Crowley Cancer Research Center to call me back. Waiting on my sister to call me and tell me that her pathology from HER surgery is clear. AND my mother is having her colonoscopy today. I think she should be done by now. I'm worried that might bear bad news. I'm worried both might bear bad news actually.
**update** Mom and Micki both all clear. Yay!**


I just hope MY crappy diganosis may help others catch possible problems early. And hoping that if I can help with a new treatment, that it will help if the girls test positive for Lynch Syndrome.

Fingers Crossed today for nothing but good news.

Update.. feelin' good.

I talked to Dr. Goodman's office and they have been getting paperwork in. I should be hearing from Dr. Goodman Monday.
I think I'll be starting an (a-hem) asparagus experiment (you know- the viral e-mail "Asparagus Cures Cancer" deal that's been passed around) as soon as I get some canned asparagus. Nothing like starting your day with a couple spoonfulls of blended asparagus (buh-arfff). I figure it can't hurt... and maybe it would be okay in scrambled eggs or something. Never-the-less asparagus is healthy and I should be eating more of it anyway.

I will also be contacting the gurus at Mother Earth Food about herbal 'stuff' to take. Haven't gotten around to the essiac tea ((shudder)) but I will. I've been taking vitamins and eating my veggies. The hardest habit to get into... drinking more water. Need to. Shame on me.

I also got a free copy of "The Survivorship Net" and read it to Iris. It's a cute book... makes you a little misty-eyed. But it was a nice story about how everyone around you helps weave a net to catch you when you fall. The prayer warriors, the people who bring you dinner, the people who are there for a text or a phone call, the friends who offer inspiration with a letter or a card, the friends you've never met in person who encourage you to keep going, the doctors who do all they can for you, the nurses who help you- make you laugh with little notes (you know who you are), the volunteers who unplug your chemo pumps (so you can be mobile) for you when you just don't feel like it, the husband and family who do everything in their power for you, the children that love you and tell you you're beautiful no matter how ugly you're feeling that day, the friends who are constantly scheming to do something BIG for you, the mother-in-law that watches your kids 4 days a week, the co-workers who make you laugh when you're having the worst of days, the distant friends who give words of support every chance they get, the dad who does your yard work so your husband can help you with other stuff, the mom that is there when you just need to get out, the sister who's door is ALWAYS open..... get the idea?
I couldn't POSSIBLY start naming names, I would surely miss someone and I don't want to do that.

But I have a GREAT Survivorship Net. And today I've decided NOT to die in a year. So- Kiss My Ass Cancer.

The Waiting Game...

I was stoked on June 4th when I was in Columbus, that I had gotten all the necessary paperwork signed to get my records sent to Dr. Goodman. I figured it would take a week or so to get all that crap faxed... so I e-mailed Dr. Goodman last week to see if he had all he needed (he would have been waiting on discs in the mail too.) He says he hasn't gotten ANYTHING.

WHAT?!?

Nope, not a thing. Not a thing from OSU Medical Center, nothing from the Strecker Center where I get my chemo. (release slips have been signed for both)

So I made some phone calls on Friday to straighten out the problem. The Strecker was apologetic and said they would get on it immediately... but the lady I spoke to at OSUMC was kinda snotty. I went to Dr. Arnold's OFFICE and filled out the request forms THERE to see that it would get done without any complications. Well, I was informed that where I was calling was at the hospital, not the office and that they only go to the office on Tuesdays and Thursdays. Hmmm, unless I'm wrong, there have been at least 2 Tuesdays and 2 Thursdays since then that you DIDN'T get the paperwork and get the stuff done. I will be calling today and tomorrow. And if for some reason the stuff doesn't get done by the end of the day tomorrow... I will simply pass the phone number on to some friends who will help make sure it gets done.
I PATIENTLY waited 2 weeks so they could get it done... 2 weeks might not be much to THEM, but it's a lot to me. It means 2 more weeks I have to wait to talk to a new Doctor that WANTS to treat me. 2 more weeks I may have to wait to get a surgery that MAY save my life.
So I hope the office gets their shit straight because I have an army of people just ITCHING to give them hell if it doesn't get done.
I love my friends. I'll release the Kracken on them... that will be a bad day for them. You don't want the wrath of my friend Karen (the Kracken)on you.... ever. She's relentless. I'm glad she's on my side.

I get irritated that every weekend I never seem to accomplish anywhere NEAR what I had intended on accomplishing. I don't know if it's a matter of expecting too much or being the super-underacheiver that I am. Maybe a little of both. THIS weekend, I hope to take the girls to a 'Walk with the animals' at the county fairgrounds. I hope it's not too hot.. cuz fat girl can sweat to put those WWE wrestlers to shame. Ick.
This past weekend- I did spend a good afternoon with my sister and dad. Though sometimes my sister can make me feel an inch tall. I'm not organized enough- I'm forgetful and a thousand other annoyances. She's still recovering from her surgery (thanks to Lynch Syndrome and cancer) so I try to help her out and let the other stuff slide off my back.

I wonder if there is a need to go through a depression to come out that much better on the other side? Is this my rock bottom and eventually I'll find my footing and come out of this funk with guns blazing? I sincerely want this to be overwith. I Really PREFER the happy me.

In honor of the "Happy Me" returning soon, here's a haiku...

Chemotherapy
Won't last forever, I think
It sucks major ass.

or

Want a Daquiri
Strawberry or Peach is good
I have a hangnail



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Best wishes and thoughts to Cancer buddies out there. Hoping Mark keeps recoverinng at lightning speeed, hope Barbara gets the Hope she needs, Hope Loretta gets good news at the doc appt, hope Dan stays clear- FOREVER!
And still crossing my fingers that the measly couple thou my team raised for Cancer Research yields results, and soon. For everybody.

New Day.

Lucky you.
You get to participate in the roller coaster of emotions that happens to be "Cancer Schmancer."
Feeling... okay today. Not great. Not horrible. Love the nausea that goes along with this fannypack. I think it's a Pavlov's Dog reaction that when I hear the pump adding another dose, I want to throw up. Luckily I don't. But sometimes it would just feel better if I did.

I'll be hanging out with this thing till about 2 this afternoon. Good times.

I am considering taking a 'me' break. I have no idea where I will go or what I'll do- though the beach sounds nice. Maybe just drive to drive, and see how far the cash in my purse would take me.
Too bad I can't get a break from thinking about cancer. I've said it before and I'll say it again: A disease like this does not deserve to be the all-consuming factor in my life. I don't want to be known as the cancer chick. I mean, I know I am to most of you because that's what this blog is all about. I kinda hope each time I write here that if I say what I'm thinking, then I won't have to think about it anymore. Sometimes it works, sometimes it doesn't and I just end up typing and crying. And crying about it later too. I wish it was like money... if I spend those emotions here, I won't have them later. (The bad ones, that is.)
Hasn't really been working lately.

Ups and Downs and everything in between. It's so hard to NOT think of everything as "will this be a waste of precious time?" I take a nap in the afternoon and I feel guilty because I'm not picking the girls up. I should be exercising, but I'm tired and if I did have energy, I should be spending that energy with the girls, or cleaning the house? Or should I make myself exercise because it may help me live longer? Or should I just pray for a miracle and spend the precious time with the girls? But if I'm tired, I'm worthless.
See what I mean?

I want a brain break... but how do you do that? If you have TOO much time on your hands, you go nuts with the barrage of STUFF you should think about and the stuff you're trying so desperately to forget.

Yeah, I realize I've gone downhill since talking to Dr. Rose. It was one thing to think I had 5 years. Who knows what could happen in those 5 years? A cure? Better treatment? Better prognosis? That's TIME. My Vera would be 5+ years and could- quite possibly have some good memories of me. And Iris would be 7. That's more TIME to be with my girls and myself.
But TIME is of the essence. You really DON'T know what you would do if someone said it was entirely possible that you would be dead in a year until it's the absolute truth. You can pretend to for a few moments. But unless you put post-it notes up all around your house with your projected expiration date- you would enevitably 'forget' your experiment.
If I can have the MOAS (Mother Of All Surgeries- as the PMP-ers call it) it won't be until October because I just had a surgery in March and need 6 months of heal time. Then I'd need recovery time after that. By the time all is said and done- ti will be just about 2 years out from diagnosis. And that's the PRD. (In Navy terms- Projected Rotation Date... the date you leave your current station and command. I think I will just use that term from here out. Because in the Navy- your PRD can come and go and nothing- or you can leave right on that date, leave earlier or you can get an extension. Seems applicable) Until then- chemo- but I can't have a key ingredient (Avastin) for at least 8 weeks before surgery because it can cause major blood loss. But the Avastin is a hard hitter to the cancer supposedly. Piss.
Can't win for losing.

I don't know how to shake the crud. Maybe a meeting with the new doctor will breathe some new hope into this shell.
I can't help but compare myself a bit to my aunt who died at the age of 30 after battling breast cancer. When was diagnosed she had a daughter that was about the same age Vera was when I was diagnosed. She died just about 2 years later. (too familiar) Her youngest daughter doesn't remember her. When she refers to her- she calls her "Lucy" instead of "Mom." And that BREAKS MY HEART. For her, for Lucy, for Vera, for me. I don't want Vera calling me "Rachel." I am and will always BE her Mommy. I think about that all the time. I'm just muddling through wondering again, what kind of mark have I made on the world? A scratch? A bug bite? No matter. All that matters to me is that my girls grow up happy... and have GOOD memories of me. I know, I know. Make videos, write letters, take lots of pictures. It's all so forced. MAKE GOOD TIMES WITH YOUR CHILDREN AND DOCUMENT IT SO YOUR KIDS KNOW YOU LOVED THEM.
Kinda takes the fun out of it though- doesn't it?

I desperately want my sense of humor back. Now, in all fairness, I CAN be somewhat jovial in reality. But I can't transfer it to this blog so easily right now. Just know that I DO still laugh and joke and do stupid things. I really just vent here. Sorry for you.

And my apologies for dropping the F-bomb. But if you know me at all, you had to know that was coming by the end of the post. :)

It is honestly a better day. Even better when I get this damnedable Fannypack off, jump in my insurance company's butts and have a Peach Snapple. Mmmmm. Peach Snapple. Reminds me of El Centro, CA- where we ate nothing but Cup-O-Noodles and drank nothing but Beer, Water and Peach Snapple. You can get away with that when you're 19... and the legal drinking age on base is 18. :)

Wake Up Call.

My husband and I had a fantastic fight yesterday. Even though we were arguing and screaming at each other, he had some good points.
I have been more bitchy at home, I am moody, lazy and a user. I think what sucks most is that if I don't change it- THAT will be how my girls remember me.
I kinda feel like my grandma did when she figured out she would be deep in the throes of Alzheimer's eventually. She didn't want people remembering her as an out-of-it old woman... staring off into space and looking through you when you talked to her. It was hard for her-it was hard for the whole family watching her go through that.

I wonder if I'm doing good for my daughters, or would it be better to minimize my time with them. FOR THEIR sakes. I don't want them to remember blubblery, sobby, whiny, bitchy, crazy me. I'd rather them remember me without the drama.
I should just take off in a mini van and travel the country alone. I hate being a burden on everyone around me. My dad mows the grass because I need Jason to help me with the kids, he worries (Though he tries to stay tough, the fact that both of his daughters have/had cancer ca't be good on the parent heart). My sister has enough to worry about, My MOM has more than enough to worry about.

I hate being the load everyone else has to carry. I piss and moan and whine to friends... they probably have enough going on in their lives without having to humor me.

Right now I contribute nothing to anyone. And I don't know that it will ever change no matter how much I want it to. I can't get past being pissed at the world for this situation. Yeah. I'm still pissed. And bitchy.

and to make it all better. Getting Chemo right now, sweating, nauseous, tired. Waiting on that fannypack.

Fuck Cancer. I try not to use that word here. But really...F.U.C.K. Cancer... that's how I feel right now and dammit... it's my blog.

You never know until you're there.

I was talking to a friend the other day about the "Live each day as if you'd die tomorrow" saying. And funny enough, another friend posted a blog (http://iwantnina.blogspot.com/) yesterday about her love of books and the topic of "If you had a year to live, would you be doing what you're doing now?" came up.

I've had probably TOO much time to think about that. Well about that and about a million other things. It is simply impossible to "Live life to the fullest each and every day." Sorry. But yeah- IMPOSSIBLE. You know- the laundry still needs done, the toilets need cleaned, grocery shopping needs done, dinner needs fixed, I still have to work because we have bills- and unfortunately you don't get paid to just sit and have cancer- even if you're pretty sure it will kill you soon. Besides- while you're dying- it's hard enough to find energy to do all the things you think you should be doing. And if you DID have the money to do all the stuff you want to do and got to do it, you'd be friggin exhausted from every day. It's a bit funny to me to hear the "inspirational" songs "Live like we're dying" "Live Like you were dying" and so on. I AM dying and other than taking more pills and paying attention to what I eat, chemo and more doctor's appointments, I'm not doing anything that different. I do 'take in' more- I watch my girls play and whine to myself about not being here for all the stuff the girls will do when they are older, I snuggle them a bit more and squeeze them a little tighter. I cry at the drop of a hat. I look in the mirror every morning when I put on make-up and wonder if the mortician cosmotologist will put my makeup on the right way for my viewing. Will she or he put blue eyeshadow on me? Grrr. (I will HAUNT YOU IF YOU DO!!!!!) Will they load my lashes with mascara the way I like to? Probably not. Will my sister pick out a dress that I would pick out? I'm so picky- it's probably a good thing I'll be dead so I won't be self concious about my jiggle belly and lack of hips... maybe they'll bury me in my kymaro body shaper. (good luck getting it on me without my help)

That is MY version of "Living as if you only had a year left." Tick Tock.

I'm sure everyone is different. Some people go sky-diving, Rocky Mountain climbing, or 2.7 seconds on a bull named Fu-Manchu (or however the hell you spell it).
Eh. Maybe I should write my own song. It would go something like this:

My house is a mess
and I could care less
Except when I have
certain guests.
I'd like to see
Italy.
But Mommy guilt
keeps me.
What if I kick it
while I'm gone?
Who will recover my
Carry-on?
Someone will see
my underwear.
And I could really use
a few new pair.

I don't know that I could sell that to any recording artists.

I'm not being pessimistic- REALLY. I'm just being real. There are things that will not be crossed off my Bucket List by this time next year. I'm okay with that. I only have 3 weeks of vacation from work. ;) Am I REALLY going to get to see Easter Island... probably not. Italy is a maybe. Though the "Learn to ride a motorcycle" is a possibility since both my Dad AND my Father in Law have motorcycles... it's just suckering one of them into letting me learn on their precious bikes. hee hee. Hmmm. My list is somewhere. Mostly in my head. I should probably write it all down again. Bah! And keep that journal. I need to just keep my notebook with me. I think of stuff that I want done when I'm gone and will tell someone in passing but I NEED to have it all written out.

#1. Do NOT bury me with blue eye shadow on.

Maybe that's all I need to address.