Monday, July 27, 2009

Round 1... done

I got the chemo today- it actually didn't take as long as I thought it would, but I'm still hooked up to one that I have to carry in a not-so-fashionable Fanny Pack until Wednesday..... I would point and laught at myself. >:) I guess there was a problem with the input part of the port- the needle would take blood but not push the meds in so they had to re-stick the port (right on my incision from putting the port in) and re-stick it again in the same spot. Admittedly... I cried. It was more aggravating than painful, but they had to push around on the incision to find the port markers on my already tender chest. Ther nurses were really apologetic about it so I'm not mad at them... it's the stupid cancer that pisses me off. If I didn't have it, I wouldn't have to worry about them sticking my port. (does that sound dirty?)
I am not sick from the chemo today. I was just tired. I took a nap there and watched Kathy Lee Gifford and friend make idiots of themselves on TV. WHO PAYS THOSE 2 TO HAVE A SHOW??? OMG I could do SOOO much better.. grrrrr. Give me HALF of what they make and I'll give you a better show 10 times over!! arrrggh!
I'm feeling one of the side effects from one of the meds- cold sensitivity. I feel minty fresh. That's the only way to describe it. If you've ever chewed spearmint or peppermint gum and then drank cold water you know what I'm talking about. I can't drink Iced or real cold drinks nor can I handle cold anything without gloves or else it feels like a cold burn.
I also talked to the Nurse Practitioner about genetic something or other. Evidently it's a DNA mutation of a couple of genes which caused this. So I have to get further testing to confirm it and to be able to find the same mutation in my girls and other blood family if they have it.

To Recap: I have a DNA mutation and Cold is now my weakness. Shouldn't I have Mutant Powers now????
Should be something like Pyro Powers- to start fires, since cold is my weakness... Or maybe I could just be a hairless catwoman. I'm sure they don't like the cold either.

Not Fair. I want my mutant powers NOW!!!

Of course it would suck if i was supposed to be "Appendix Girl!!!" Because I no longer have one. That would be my luck.


Saturday, July 25, 2009

Now that the dressing is off

AAACK!! Why did the doc need to put that stupid incision right in the middle of my chest? I thought he'd put it to the side-ish. Now I've got an incision at the base of my neck and one for all to see the second I wear a V-neck shirt.
Is it too soon to whine about being cut-up?


Well, after sitting in the hospital for 3-1/2 hours I finally got my port in. Hoo-Ray. I am SORE! I feel like Frankenstein because I'm paranoid to move my neck. (insert yummy sound here MMMMMMM!) I don't think I was this sore after my big surgery. I didn't realize how much I moved my neck and used those muscles. uughh.I got some good pain meds, but they only go so far. Maybe it just FEELS bad because of the idea of the port and not the actual thing. hmmmI've got bandages on my neck and chest- those suckers are coming off first thing tomorrow.So, it's not much to tell. It's just there. But it's an update none-the-less.Hope everyone is well!Until next time..............................

Wednesday, July 22, 2009

Appendiceal Cancer it is..

I talked with my family doctor last night... yes- she gave me her home phone number- how wonderful is SHE? I am very sure not to abuse it though :)
After all the appointments and so on at OSUMC, they've called it Colon Cancer... but to be more exact- my doc said all the pathology signs point to the appendix. That is IS Appendiceal Cancer. (still in the Colorectal Cancer "family") I guess it's just for conversation's sake because it's still Signet Ring Cell Adenocarcinoma which is DISMAL if you look at the numbers. (I have to remember to NOT look at the numbers- they are from 11 YEARS AGO!!!) Does it REALLY matter where it came from? Does it matter if a serial killer is from Chicago or A SUBURB of Chicago... For my own sanity- I'll say Appendiceal Cancer though. I was so tired and aggravated at reading all this crap about colon cancer being "the most preventable cancer if you just eat right- no animal fat and TONS of veggies and take care of yourself and exercise and blah, blah, blah." It's all over the literature you read AFTER you are diagnosed with colon cancer. I don't believe it- but that little jerk that sits in the back of my head (Mr. Self- Doubt) kept saying "oooh, you know you wouldn't have colon cancer if you would have just been a vegetarian. ha ha- YOUR fault!!" I hate that guy. So with it technically being appendiceal cancer I can slap him in the face and shut him up.

Tuesday, July 21, 2009

Only days to go

I am admittedly apprehensive about getting this port put in. ugh. Well, that and a thousand other things. I started a journal when this whole rollercoaster pulled out of the station... but have only put a couple of entries in it since.. and one was just bitching about Jason. i think I can get my thoughts out faster by typing- but then I just look like a bad mom cause I'm on the computer. If I took the same amount of time out to write in an actual journal it wouldn't look as bad. WTH?
I don't know what I'm going to do this Friday after surgery. Do I bring the girls home? Because I'm just shipping them off to Grams' house on Monday. I feel bad that the girls are getting shuffled around. Poor Iris is getting weary of it and this is just the beginning. Vera is reaching the attachment phase and wants Mommy- but I am not going to be able to tend to her like she needs to be. it pisses me off. Stupid effin' cancer.
I hope we can make it to good 'ol Coolville Founder's Day festivities, I haven't been since I dated Tim Linton... now THAT'S a blast from the past. I think we were too coll to actually enjoy it. It's a lot different when you've got kids- rather being a teen with "better things to do." Like making out. tee-hee.
So I'm going for a pedicure tomorrow- lucky pedicure lady. Pity her that she's gotta deal with my feet. blech!! I do wash them...
I'm hoping to be able to get around well after chemo, but I'm not counting on it. I will start jogging again when I can. Want to get skinny because I'm healthy not because I'm sick. arrgh!!

It's just nice

Friday, July 17, 2009 at 11:03am Edit Note Delete
To go into work, that is. I set my alarm for 5am and hit snooze until it just didn't go off anymore. At 6am I drag my butt outta bed and tell Jason that I'm going into work (he didn't believe me). I COULD HAVE tried to sleep in- but sometimes when you have little ones- trying to sleep in is more frustrating than just waking up and knocking the dust off and getting the day started.Going to work was a little "me" time that didn't consist of laundry, shower, Doctor's appointment, driving to the doctor's appointment, getting stuck with needles, drinking some nastyfluids for a CT scan, getting a CT scan and so on. (I WILL get a pedicure soon!) It just felt nice to be back at work even if it was just for one morning. I've worked since I was 16- it's hard to NOT work. Don't get me wrong, I love the time with my girls, but there's something secure in working. I hope they don't figure out that they can manage just fine without me... I will be out of a job when I can come back permanently. As treatment gets closer it gets more real... not like it WASN'T real... it's just weird to be on the other side of the "Cancer Stories." We'd done St Jude radiothons at the station and I'd listened to the sad stories and cried for those kids and families but I cry less being on this side. I only cry when I think of leaving my girls.2 days after my diagnosis I was getting my hair cut and I was sitting next to a girl that was getting her hair dyed for prom. She was getting "firey" colors and it was so cool and funky. Just like I would have done mine when I was in high school. I got misty-eyed thinking I might not see my girls graduate. I can handle pretty much everything else. That's why I TRY to be understanding when my parents get emotional talking about my situation. I can't imagine if it was one of my girls going through this. It's my silver lining- that it's not one of them. A guy I work with has a little girl that is a week younger than Iris and she was diagnosed with cancer last year. She had a lung removed in Jan and just finished chemo. So when I feel bad for myself, I just look at that situation and re-think.I joke a lot about MY situation, it IS serious- but humor is how I cope. Anyone who knows me would tell you that I am an emotional person- so it's either laugh a lot or cry constantly. I choose to laugh... most the time.Well, just to go over the timeline... I get my port put in next friday, then chemo on the 27th and every other monday after that until the nd of august when I do the IPHP chemo (I've heard that it's nickname is "Shake and Bake" :P ) and then IV chemo every other Monday after that for 4-6 weeks then another IPHP chemo, then more IV chemo every other monday for a grand total of 6 months.Watch out for my Relay for Life team next spring.. Rachel's Renegades? That's a little more tame than what I had originally had picked out... gotta keep it "G" Rated. If all the people actually come that said they would- it will be quite a team. We'll rule the school!!Again, thanks for all the well wishes that continue to pour in. I do appreciate each and every one of you.Take it easy.until next time.........................................

Tick Tock

SO I will start this off with a bit of sarcasm. Joy that I will be getting port put "instsalled" in a week and joy that I will start chemo on July 27. I mean it's all good that it is in motion but I can't say I'm gonna jomp in excitement for what lies ahead of me in the next 6 months. I wish I had some words of wit but am totally tapped out after arguing with a certain husband.... didn't anyone tell him he's not supposed to fight with a cancer patient??? Guess he didn't get the memo that once you get cancer- you are always right in spousal disagreements. I will fax that to him the first chance I get.

Wednesday, July 8, 2009

Here's what I know at the moment

It seems the more I dig about this stupid ass cancer (pun intended) the less I know. Signet Ring Cell Adenocarcinoma affects .10% (notice the point?) of colon cancer patients... if that. (I'm gonna call it Colon cancer with Appendecial cancer tendencies just to annoy anyone who really doesn't care about me personally- but just wants to have that token "friend with cancer") My surgeon says he sees maybe 2 cases a year. I just gotta be different you know? I was UNDERWHELMED with the oncologist I saw last week. We'll Call her Dr. K... if you're ever in need of an oncologist- contact me and I will give you her real name so you can avoid her. She was inching towards the door as I was asking questions... I guess i was taking up too much of her time asking dumb questions about my inconvenient cancer. Thankfully, I will not be seeing her again- I will be going to Dr. Cawley in Marietta. I'm actually anxious to meet her because I've heard nothing but RAVE reviews about her. So here's the skinny: I will be meeting with Dr. C to schedule IV chemo treatments until IPHP chemo surgery is optimal. Since I had the right hemicolectomy I should be waiting at least 3 months post-op before doing IPHP chemo to avoid complications and setbacks. (IPHP is also known as HIPEC.. if you wanna know more- ) Then more IV chemo for a few weeks until the second round of IPHP 4-6 weeks after the first. Then more IV chemo.I gotta say that though we may have gotten off to a rough start- Dr. A (my surgeon) is a kick ass guy. He doesn't pussy-foot around anything and wants to tackle my cancer with guns blazing rather than a "wait and see" approach like Dr. K was suggesting. If she had cancer I doubt she'd be okay with a wait and see attitude then. grrrrr.So now- I wait for the 15th when I visit Dr. Cawley. It's almost like waiting for Christmas... what will suprise me next? Hopefully a wonderful suprise like candy or a pony instead of the "Waiting for the Day after Halloween" suprise where your front door has been spray painted with some obscenity that only makes sense if you're a 15 year old. Then it's just sad.. not because your front door is vandalized, but because you realize that you're an old fogie. GET OFF MY LAWN YOU DAMN KIDS!!!!I digress....I only know a bit more than I did yesterday, but I'm happy with Dr. A and his take caharge attitude. He seems to "get" the sense of urgency that I have.I don't know what the IV chemo will do to me, but I'll tell everyone right now- the SECOND my hair falls out in clumps, It's ALL coming off. I think I can rock a bald head... and I've always wanted to find out just WHAT my melon really looks like. No wigs for me- scarves, maybe... hats, maybe. But hell- if it's hot outside, it will just be SPF 45. ;)I want to add and stress that all the support, prayers, thoughts and well wishes I've gotten over the last 2 months has been overwhelming. I can't begin to thank everyone properly- so I "Pay It Forward" with you all in my heart. And I will continue to do so as long as I'm on this Earth- which will hopefully be a VERY long time. Remember to give your loved ones hugs and kisses... and NEVER miss a chance to tell them you love them with all your heart.Lata!Rachel

Cancer Schmancer

Wednesday, June 10, 2009 at 7:04pm Edit Note Delete
3 weeks after my colon resection surgery I met with my surgeon and the oncologist. The surgeon told me I'm healing well and that the incision looks good. He removed the right half of my colon, my appendix, 18 lymph nodes and my omentum fat... uh, yeah and the tumor that was about the size of a baseball. It's definitely stage 4 cancer because it traveled outside the colon to the fat, 8 of the 18 lymph nodes and to the inner abdominal wall. The name of the beast is "Signet Ring Cell Mucinous Adenocarnimoma" yeah- say that 3 times fast. That's the status report. I had to edit to add- "No, I do not have a colostomy bag, all is functioning as it should." I know a lot of you are curious, but didn't want to ask. :oPBasically since the cancer got out of the colon it's likely spread microscopically to other organs in the same vicinity. Those microscopic cancers can't be seen (duh) to be removed so I will be doing chemo- but not the IV chemo that's "systematic" that is the standard. I'll be undergoing an IP (intra peritonial) treatment where they put a catheter into your abdomen and wash your "innards" with chemo. Supposedly it's more effective for what I've got going on. That will be done next month after I've healed from the surgery. Then again probably in September. It's prety harsh so it's only done every other month 2 or 3 times- if it's not effective, then I'm going to have to do the IV I go back in 2 weeks for a CT scan, then the following week I meet with the surgeon again and the oncologist again and the geneticist (sp?) to see if this is likey to be passed on to my girls. (cross your fingers that it's a big fat no) Then sometime after that I do the IP therapy. ugh- it's another night or 2 in the hospital (it's a good thing I like those people;).What the docs say is that this particular cancer is hard to fight and is not cureable- but it can be montored and fought now that we know it's there.I know there are plenty of stories about people given a certain timeframe to live and have beaten the odds. My story will be no different. I can kick even the "unkickable" asses. Though I've only been in 2 real fights in my life... I did kick their asses- muhahahahaI don't plan on going anywhere A.N.Y.T.I.M.E. soon, so get used to it.Thanks all for the continued kind thoughts and prayers!I will update when there is any more to tell!Right now, Iris is at Micki's house (for those of you not in the know- Micki is my great sister/chauffer) and Vera is at Mom's getting her 6 month nakey portraits tonight. I can't wait to see them, but for now- I'm feeling pretty tired (busy day) so I will take it easy tonight so I can be recharged to hang with the girlies tomorrow.Take care everyone- make sure you never miss a chance to tell your loved ones what they mean to you! NEVER!(((((Hugs)))))Rachel


Monday, May 25, 2009 at 8:34pm Edit Note Delete
Ugh- Day five. They are still waiting for my insides to get with the program if you know what I mean. That seems to be all the doctors want to know.I still haven't seen the surgeon who actually performed my resection. I SHOULD see him tomorrow- along with the Oncologist. I may have to have a blood transfusion because my hemoglobin levels haven't been anywhere near where they should be. The "on Call" doctors for the weekend haven't had the balls to make a call one way or the other. I can't wait to have an actual DOCTOR taking my case and acting on it.(from what I've heard- the On Duty doctors don't like making decisions for other doctor's patients.. like they're stepping on toes)I've been stuck more times than I can count- for IVs, blood draw, for heparin shots and so on. Most of the time it takes 3 or more sticks to get an IV started. Rolling, tiny veins is what they say. I guess I should get used to that- chemo will be a hayride..The incision on my belly is about 4 inches long-- they left my bellybutton alone, kinda.. but they said they went in between my ab muscles to dig around. No wonder I feel like I went 10 rounds with Rocky Balboa.I want to find out how soon I can start chemo since they told me that they found more nodules on the inside of my abdomen wall... and that they biopsied some of them, but there were a lot- too many to cut out so they left them in the hopes that chemo will kill them. The silver lining being that there wasn't any sign that the cancer had spread to my lungs or liver which is supposedly where the "Signet Cell Adenocarcinoma" likes to go after wrecking the first organ it gets a hold of.I can't help but think/feel like I'm just rotting from the inside out. And I am seriously on about tomorrow. That's when test results should be back and from the sounds of it- it isn't good. NO test results for the past 2 weeks have been anywhere near good.. more like the other end of the spectrum.I just want some friggin' GOOD news for a change- Maybe tomorrow is my day. This shit's gotta turn around sometime.

It's 5am

Sunday, May 24, 2009 at 5:00am Edit Note Delete
I've been up since 3. Micki spent the night in the room with me. Have I said I still don't know if it's sunk in? It's been 2+ weeks since the onset of symptoms that sent me to the hospital. I had a colon resection where they took half of my colon and sewed my small intestine to what's left of my colon. And now Not only do I have Colon Cancer.. it's possibly stage 4 Colon Cancer, and it may be what they call "Signet Ring Cell" cancer that is considered more aggressive and very hard to treat. Basically the Doc came in yesterday and told me that most people with that type of cancer don't live more than 5 years after diagnosis.What a crock of shit. I'm going to fight with every OUNCE of me. I have 2 beautiful girls that will be my strength. I had never discounted the possibility of getting cancer- I just never thought I would be only 33 and fighting for my life. I'm just going to come out and say it... Why me? This is stupid ridiculous. Like I said before- I don't even know that I can just cry about it because it's not real to me. It's gotta hit me a some point, but I'm mad more than anything right now.I will do all that's in my power to stay here so I can be a Mommy. It's going to be a long road- but there's nothing that would make me give up for even a second.

nowhere to go but up

Saturday, May 23, 2009 at 3:09am Edit Note Delete
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Basically that's what stage 4 is...i guess. I am simply pissed. of course I'm mad as hell. That's one stage of coping.... Hell yes I'm mad.the grief comes and goes. mostly just when I think that I might not get to see my girls go to prom. Screw that I'm going to fight with every ounce of energy I've got.

waiting is the hardest part

Friday, May 22, 2009 at 7:55am Edit Note Delete
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Let me first say that most everyone here at OSU Medical Center is great. BUT I came in 2 and had surgery... major surgery to remove cancer and to see what stage it was in. The surgeon evidently came out to tell Jason some stuff and Jason didn't take any kind of notes. He thinks the doctor said he got the tumor and some fatty tissue that the cancer may have seeped into. but at the same time Jason swears the doctor told him it was stage 4 cancer. > which is a very bad prognosis. jason COULD HAVE educated himself a little about cancer... ha says "stage four" like it's nbd. I have no idea what's going on. Mostly because I haven't even SEEN my surgeon. I thought I'd see him on his rounds this morning - nothing. I'm pissed that I've got tons of questions and no one to answer them And that Jason can't really remember what the surgeon told him. so I've been up since 4am thinking SOMEONE would be in to tell me about the CANCER they removed from my body.arrrgh!!