Friday, September 24, 2010

The Plan, Revised & Ever Changing

This post is LONG overdue.  I started to update several times, but never finished. 

Lots has happened since my last post and I won't go into too much detail because I'll never finish!

I started chemo in late July and had two treatments before I had the joy and privilege of going to First Descents to learn to kayak with other cancer survivors (more on that later!).  The first two treatments were really pretty easy.  I bounced back easily and didn't feel too bad on the bad days.  Despite feeling good, when I came home from camp, my counts were low and my next treatment was postponed.  Since then, I've had three more treatments, each one worse than the last.  The effects of chemo are cumulative, but I didn't expect to feel as bad as I did.  My last treatment was last Thursday and I feel like I am just starting to emerge from the haze.  My biggest complaint lately has been a neverending banging, throbbing headache.  An MRI ruled out cancer, so now I just have to figure out what is causing it and get it under control.  My oncologist has suggested that it is from tension.  What's there to worry about?  Ha, ha.

I also have a new team of doctors at Duke University.  I got a 2nd opinion there just after I came home from First Descents and have been back two times since.  My oncologist there wanted me to have a few more treatments and then come back for scans there, which happened on the 15th of this month.  My response to chemo has been good and my tumors have shrunk.  This is great news, but I will admit that I was disappointed that they were there at all.  I keep thinking that someone is going to come into the doctor's office and tell me that it was a big mistake and there is no cancer after all.  I met with a surgeon on the day of the scans and he is going to operate to remove lymph nodes on the left side.  He is also going to remove my implants and take out a chunk of skin where the rash was before chemo sent it on its way.  I will have the surgery at Duke in early October and will just have to spend one night at the hospital if all goes well.  I went back to Duke again on the 20th to meet with my oncologist there as well as the radiation oncologist for a 2nd time.  The original Duke planned involved some major radiation, but when I met with the radiation oncologist on Monday, she told me that she wants to wait and see my pathology after surgery to see whether she will want to zap me at all.  There is lots of area to cover and she can't re-radiate my supraclavicular area because it would likely cause nerve damage in my right arm and/or paralysis.  She is also worried that my cancer doesn't respond to radiation because she is sure that these tumors were growing while I was being treated the first time.  That is very scary stuff.  She also mentioned that I would probably have more chemo after surgery.  And I will cross that bridge when I come to it.

Annabel is doing great!  She keeps me laughing and keeps me on my toes.  Her favorite thing to do lately is play with her babies.  She feeds them, undresses them (I'm in charge of putting the diapers on and getting them dressed), puts them on the "bus" (lines up the dining room chairs), puts them "a sleep".  Scott also got her a choo-choo and she has been playing with that a lot.  She still enjoys painting and coloring, too.  Her favorite show is still Max and Ruby if you ask her, but thankfully, she's willing to watch a variety now and probably watches too much TV.  She is not in school....yet.  We postponed it because I thought I was going to have to go to Duke for five weeks of radiation.  Now that seems to be out, we will get her started in preschool soon.  I hate that she will start late, but I think she will like being around other kids again. 

I have lots more to say, but time has gotten away from me again and we are finally going camping again!  I have to go and get ready.  More later!