Adjusting to Hospital Life and Treatment Update

On Friday afternoon, my doctor came in to give give me an update on my treatment plan.  The plan was full body chemo, brain radiation and spinal chemo. She has been working with the leukemia specialist at Dana Farber because my case is so unique.  You see, my bone marrow shows no sign of leukemia, my MRI and CAT scan show no sign.  But I do I have a rash on several parts of my body that has been biopsied and is positive for leukemia.  My spinal fluid is also positive and I still have double vision.

The new plan is 5 days of chemo (to treat the rash) and 10 days of brain radiation (to treat the vision issue and avert any additional brain issues) to run concurrently.  The chemo consists of 1 dose of a bright blue chemo that runs 10 minutes and another chemo product that runs for 1 hour.  Much better than the 22 hours a day of chemo I was on before.  This new plan also means no spinal chemo which is great.  I am not into the needle going into my spine at all!   I just had my second dose of chemo today and will start radiation on Monday.  So far no side effects.  In order to get my chemo going, they had to give me an IV line.  You would think by now I would be getting better with needles.  I think I am getting worse.  When the nurse says "I have heard of being wimpy, but you are something else!" you just accept the fact that you are wimpy.

So after my 5 days of chemo, my counts will drop again.  I had mentioned that I may be able to do all this as an outpatient.  Not the case with this new plan.  After my counts drop,   I will need to play the game of waiting for my counts to come up.  Hopefully will not be the 30 days it was last time.  So all and all, we are happy with this plan.  Last week we were not so positive.  We are doing much better now.  Side effects do not look to be that bad, and should not push transplant back that much.

I am bummed about being back in the hospital, but I am now a professional patient so that makes it a little better.  I am walking 1 1/2 to 2 miles a day to try to stay strong for the upcoming bone marrow transplant.  All the nurses know I am a wimp, so they are extra nice to me.  I know the best time to order dinner so it does not take 1 1/2 hours to have it delivered. I know you have to run the hot water for 10 minutes before it gets hot. I know that when the lab (or bloodsuckers as I refer to them) come in at 5:30 AM to take blood, they will sometimes come back if you pretend you are sleeping (fake snoring increases the likelihood of them coming back later in the morning).

As I walk daily around this floor (the cancer floor) I realize how lucky I am.  As bad as my situation may seem, I am in a much better situation than most of the people up here.  Many of them are much older and do not tolerate the chemo nearly as well as I have.  It is an eye opener as to what a terrible disease that cancer is.  I came across a t-shirt the other other day with the following slogan written in bold face on the front: "CANCER, where the F!#K is the CURE?"  I edited it here and would never wear a slogan like that in public, but seriously, where is the cure!!???  Are our best people working on it?  Do we spend enough $ on it?  Probably not if we are having celebrities put on fund raisers to raise money for cancer.  When was the last time celebrities put on fund raisers for the military?  Enough of that..  I am not some controversial activist, just some random thoughts... 

Here is the new room: