Oncologist appointment 3/8/2010

Hello everyone,

I'm very thankful to feel good this week- and it's easy to say right now- but after last week I hope to never take plain old energy for granted again.

I'm supposed to meet with my oncologist before every chemo session (every other Thursday if you've been paying attention.) But, on Thursdays he holds office hours in Lake St. Louis and my chemo is in St. Charles. Apparently now that my file is the size of an encyclopedia they can't transfer it to another office. So, I'm unable to see the doctor on Thursdays- long story short. It would save us one of the horrid co-pays if I could do chemo and the appointment in one shot, but I guess not.

The point is- I saw him Monday. They aggressively snatched some skin off my finger to test my CBC...complete blood count. I have to say, cancer is actually kind of spoiling me. No more waiting days or weeks for test results! They are always on top of it! They practically followed me from the lab into my exam room with my stinkin' blood levels.

I was hoping to give my new port a work out; I mean that's what it's there for. I got a little bossy and said "Use my port. I numbed it and everything." I was so proud. They use it to actually draw blood- but the CBC requires such a small sample they just pricked me instead. Ok, fine... have it your way.

Let's see, they mainly check for three things. White blood cells and platelets are very important but I don't remember what the third one is. Something equally important, let's say. Everything has taken a severe hit as a side effect from the chemo, and that was expected. My white blood count went from a normal 10.8 to 3.5. after just one session. OUCH!!! So, I just have to be extra careful about germs. Try that while being around snotty toddlers and two school aged girls dragging some bug into the house every week! :)

They will not administer chemotherapy if my count falls below a 3.0. They will test me again tomorrow right before my session, and if it falls too low you just get sent home! Another option is the nasty Neulesta shot each week to boost the white blood count, but those are not fun. They shoot it somewhere in your back and it can cause severe bone aching for days. No thank you. I'm praying I hang out at the 3.5 for the duration of my treatment.

What else- Oh, I asked the doctor what my life will look like this time next year, and five years from now. Of course our goal right now is to beat this, but I really needed a snapshot of my life going forward. He said assuming we get the cancer now with chemo and radiation (and as aggressive as ABVD is, that's an assumption for now. Some do not respond to chemo and move on to stem cell/bone marrow transplants but we won't focus on that right now!!!) I will have examinations every 12 weeks for the next five years. I will also have CT/PET scans once or twice a year.

If we get the cancer now, and no lumps, concerns or cancer are found in the next five years- then I will go to a once a year appointment and full body scan.

Many people respond to chemo and radiation and go into remission for 20+ years. We all probably know that some relapse several times. He told me it is crucial for me to stay on top of things and regularly check myself for anything out of the ordinary. It's kind of funny- lymph nodes are ALL OVER your body so he said I need to be feeling and examining everything from my face to my ankles! Again, the radiation puts me at risk for secondary cancers, so regular female health visits and breast exams are crucial (due to the localized radiation on my neck and chest.) I'm not quite sure how I'm supposed to check my own lungs for cancer- that will be a challenge. :)

I'll be honest, the secondary cancer piece of this really ticks me off. I've got one cancer I'm going to have to watch for the next 50 years, but now I'm susceptible to several more, just because of my treatment??? Are you kidding me? There is quite a bit of debate surrounding radiation because it is basically used as insurance. The chemotherapy should kill the cancer. In laymen's terms, radiation just hunts down any 'baby' cells that may be lurking, whether they are really there or not. Some doctors don't prescribe radiation at all, and stop after chemotherapy. Many patients get second and third opinions before making these decisions.

Daniel and I are in the mindset to hit this as hard as possible the first time around, so we're going to do it. I'm still ticked though.

COMPLAINING ALERT
My doctors certainly want me to be optimistic, but they warn against expecting my life to return to 'normal' after treatment. 'Most' cancer patients, and I use that loosely, get cancer at an older age therefore endure the after effects for a shorter time. Having to watch for 16 different cancers (ok that's an exaggeration) for the rest of my life is not something I'm thrilled about. Staying positive is crucial of course, but taking a moment now and then to be realistic is equally important.

I'll quit whining now. I have life!

We're going to choose to be thankful that radiation (and chemotherapy) even exist at all and can hopefully stop the cancer in it's tracks the first time. We'll just do all the monitoring (and praying) that we need to going forward. I'll get over it.

Hair usually begins to go between session 2 and 3 so this will be interesting. They told me to expect a constant 'too tight pony-tail feel' as a sign it's coming. Ladies, you know the feeling I'm referring to. Nice. I've decided if it REALLY starts coming out I'm taking scissors and giving myself an (inch or so long) pixie cut for a while to see what I look like with SHORT hair. We'll see-

Oh, did you know that many patients claim the hair on legs and underarms usually hangs on for the ride? Spring is coming, can I catch ONE break please, follicles???

Chemo in the morning! I'm going to see if my nurses will pose for me so you can meet them. Happy Wednesday everyone!!!! :) :)