Ooops. I think I broke it...

Okay, I didn't break it, but it doesn't work anymore. It's not even there anymore. Maybe you're wondering what the heck I'm talking about 'cause my last post probably didn't make any sense. I'm talking about my central line or "port". For those of you who haven't been graced with the view of two tubes sticking out of my chest - that is what my central line is... umm, was. It's where they hooked the chemo up when I go in for treatments. I guess there's a few reasons for this. One is because the medication would jack up my veins if it was administered directly. So maybe the doctor didn't use the term "jack up" but that's what I heard. Another reason is because I need to wear a pump (aka banana phone) for two days after treatment and that's what they hook that puppy up to.

Last week I had my stitches taken out and the port was being held in place by a stat lock (sticky thing). Unfortunately, yesterday when I went to change the stat lock and was cleaning the area, the tube slipped out - alot... This morning I called and they said I would have to go in to get it checked. Then I went to clean it again and it slipped even more. The nurse told me that it only had about another inch and the whole thing would have came out! That would have FREAKED-ME-OUT! Thank God that didn't happen.

So they took the whole central line out. No more tubes in my chest. Just a big ol' bandage that I have to wear for 24 hours. I had a choice to make after that. I could either go in and get another central line in the same place which would require surgery again. Or, since I have only 4 more treatments (that's right, I said four!) - that's considered "short term treatment" now and I can get a PICC Line. It's the same thing, just in my arm. I wasn't really psyched about either option. If you recall, my first surgery for the central line kinda went whacky and had to be done a 2nd time. And getting something in my arm just sounds weird. But it's all weird I guess. The nurse recommended the PICC, plus it will cost less than another surgery - so I'm going with that. And here's a plus - I'm without any line until next Tuesday when I get the install. Yay! I can't tell you how cool it will be to be without that plastic installation - even for a week!

So that's what's up with me. What's up with you? :o)

And the winner is...

I heard from nurse Tracey this morning. My paperwork was submitted for participation in the Clinical Trial and I was drawn for the control group - which means I will not be receiving the additional chemo drug Cetuximab. That's the one that I mentioned in a previous blog titled "Freaked Out" cause um, I was freaked out about possible side effects...

So lets weigh the good and bad about this...

Bad

• The only bad I can think of is that should this drug end up being an effective preventative measure for recurring cancer, I will have missed out on taking it as a prevention drug (but it will still be available to treat recurring cancer, so... :o)

Good

• No rashy side effects on my face, neck and back!
• I will go in for treatment every other week instead of every week - already bringing my count of treatments down from 25 to 12!
• Being part of the control group means that I will be given the same chemo regimen that I would have received had I not signed up at all - but, since I am part of the study, one of the three drugs will be funded by the study! That is a huge financial consideration cause I'm told these drugs are pretty expensive.
• I'm still part of the study and will contribute to the findings that may affect a lot of people dealing with colon cancer in the future.

So really what I am trying to say is - I am okay with this.

Noticing the "good stuff" -
[x] Clinical Trials... a must if we're ever gonna cure cancer

Freaked Out

Okay, so I think my attitude towards this whole cancer business has been pretty good. Optimistic. Hopeful. Determined. And not because I am trying to put on a front for anyone, but because that is how I truly feel. Even through my first meeting with my Oncologist, Dr Azar on Wednesday. I re-listened to the short portion that we did record and was amazed at how calm and collected I sounded. And there was even a point in the meeting when my sister got a bit freaked out and I put my hand on her arm, patted her and told her "Don't worry, I'm gonna be okay."

But last night I was working on my journal and I was researching the Clinical Trial drug Cetuximab and I'm going to admit - it freaked me out a bit. As I mentioned, they really repeated that one of the side effects would be the rash on my face. I went ahead and took a look at some photos of people with this reaction - and wholly cow! It scared me. So I've been trying to tell myself that I really need to weigh the side effect with the possible gain - acne like rash/non-recurring cancer. hmmm... I know, not a tough choice huh? And I can say that right now, but realistically - three months from now, I might be tired. I might not feel well. And will looking at myself in the mirror be the straw that breaks the camel's back? I hope not.

Heck, I don't even know if I will be chosen as one of the participants that take the Cetuximab, so I know I just need to chill out - and I will. Point is, some things about this do freak me out...

Give it to me straight Doc...

Okay, Okay, Okay. Here's the big update. I wasn't trying to hold out on info - the doctor's appointment that started at 1:30pm lasted until 4:00pm! Yikes!

That being said, there was a lot of information. I had even bought a digital voice recorder so that I could re-listen to the conversation. Unfortunately, I didn't press the record button. That was truly disappointing. But Sheila was there and she took notes and we went out for ice cream afterwards to come up with a brief breakdown.

Here we go....

First decision - To chemo or not to chemo? No brainer right? I am going to have chemotherapy treatment. We ended the visit with the numbers, but I am going to note them here at the beginning because this is where I think they fit in.

My Final Pathologic Diagnosis reported at least AJCC Tumor Stage Grouping IIIB.
With this staging, percentages are

- without treatment, 64% cured within 5 years.
- with treatment, 85% cured within 5 years.

So one big answer is, my cancer is curable! yay! Point issued! However, there is a chance of new cancer, so I will continue to have checkups FOR-EV-ER to check for polyps. yay! ok, not really "yay", but you know...

Second decision - Participate in a Clinical Trial or not? If I had to choose right now, the answer would be yeah. But I have until Monday to decide, so.... nope, chances are still that I will say yeah. The deal is, if I decide to participate in the study, I would then be placed in a random drawing to decide which side of the study I would be on. One side would be treated 'standard' with the standard recommended chemo. Second side would be treated with the standard chemo plus another drug called Cetuximab. It's a 50/50 chance that I will end up on either side.

FYI -
Title of Clinical Trial: A Randomized Phase III Trial of Oxaliplatin (OXAL) Plus 5-Fluorouracil (5-FU) / Leucovorin (LV) With or Without Cetuximab (C225) After Curative Resection for Patients With Stage III Colon Cancer (N0147).
Shorthand: FOLFOX with C225 or FOLFOX without C225. much easier...
Note: "FOLFOX" is the short term for a standard treatment (with a combination of the 3 drugs oxaliplatin, leucovorin, and 5-fluorouracil).

Pros:

- Medication has already been FDA approved for treatment of recurring instances of colon cancer.
- It is not an experimental drug.
- Dr Azar seems to recommend it.

Cons:

- Side effects, especially a rash on face, chest and back. They were extremely clear that it would be almost a guarantee that I would experience some sort of reaction like this. So be prepared, I may be a pizza face for the rest of the year. Please be kind.
- Instead of getting treatment once every two weeks for six months, I would get treatment once a week for six months plus an extra week.
- Double copays. Does it really matter at this point?

What else about chemotherapy?

• I will be going back to the Franklin Offices on Monday to take a chemo class.
  
• Treatments will occur for 6 months starting May 1st.
• First week will be 4-6 hours, second week will be 2 hours and then weeks continue alternating. Second week will only be if I am chosen to be on that part of the clinical trial.
  
• The surgery department will contact me within the next week to schedule a visit to have a "port" attached right under my collar bone. This will be a permanent fixture for the entire time I am receiving chemotherapy and will enable me to have my IV's hooked up to it on my visits. The doctor told me that I shouldn't experience any of the pain I did with my IV's in the hospital.
  
• This port will also connect to a pump that I will be able to wear around (not sure how often) to receive part of my treatments. I am told the pump is about the size of a banana. Hmmm- a little lunch-box sized banana? A Chiquita sized banana? Or a big 'ol plantain sized banana?? Reminds me of when the doctor said the tumor was about the size of a bar of soap, yeah - a hotel bar of soap.
  
• It is unlikely that I will lose my hair, although it will thin out.
• It is likely to induce menopause.
• Symptoms are likely to get worse as treatment continues, but they should go away once I complete it.
• May be extremely tired
• Will have painful reactions to cold (food, drinks, weather - anything cold). Ugh...this sux to me!
• And many other side effects that I didn't write down... :o) ooops. I'll get more info in my chemo class. I plan to turn the recorder on this time!

Okay friends. I know this is a lot of information, but really - it's the condensed version. I am looking forward to seeing Sheila's notes on the meeting and to taking the chemo class.

How do I feel now?
I have to admit, I was blown away by the 6 month time-frame. I don't know why I was thinking somewhere more around the line of 6 weeks. But all in all, I am still really optimistic. And thank you so much for your continued support. I know it has everything to do with it.

Also - special thanks to my mom and dad, my sister Ruth, Mondo & Sheila W for sticking through the whole appointment! Love ya.