Breathe

Many things went right today.  I remembered, almost at the last minute, my photo ID and insurance card for my doctor's appointment.  I was able to drive my power chair in a nice straight line long enough to get in and out of the transport vehicles that assisted me.  The front of the building housing the cancer clinic was splashed with beautifully colored tulips, and the sun was bright and warm.

My chemo doctor is not in a hurry to begin any kind of chemical therapy, and this is a good thing.  We need to give the radiation time to complete its work, wait until May to do follow-up MRI imaging, do new blood work to confirm and learn greater detail about the nature of my blood clotting gene mutations, and then begin to evaluate whether chemical therapy is the appropriate next step, and which chemical to use.  I confirmed that there may be other drugs besides the frightening Avastin that we may end up considering, although I had to be honestly informed that with my tumor, considered a member of the sarcoma family, these other chemicals are often not as effective as desired.  I also confirmed that my doctor, who I very much like, is not a resident on rotation who will move on to some other field in a few weeks, as sometimes happens when you see physicians at a teaching hospital.  He is in charge of the other doctor I also see at the cancer clinic and he is with me for the whole journey.  Together he and I are in charge of my care, we are like co-captains of my Hematology/Oncology team, and I have great confidence in him.

There are challenges in any day, and this one was no exception.  In the past 24 hours my urinary tract infection, which should have been completely resolved by now after a week on antibiotic, has raged into an out-of-control pain monster.  For most of the past day I have rated my abdominal and urethra pain at a 6 on the ten point pain scale, and for a person of my pain tolerance to rate pain above a 5 is quite significant.  Above 5 means tears and begging for stronger pain relief, and indeed I have been.  A sample went out this morning, and I desperately hope it provides answers tomorrow that lead to medications that bring me relief.  

Speaking of relief... For sheer comic relief, the universe saw fit to provide me with another humorous accident today.  While getting out of bed to go to my appointment, my legs at one point flopped over the edge of the bed and landed on the down-turned side rail (which is cushioned and didn't hurt me), at precisely the right location to crack the hard plastic dispenser for emptying my catheter bag.  This immediately released a flood of my brightly stained urine on the floor.  Thanks to the medication for my UTI, my urine looks more like kool-aid than a bodily fluid, so that was a colorful little complication in my bed-to-chair transfer process.  Fortunately with a new bag swapped out and some quick towel-mopping by my therapists we were soon back on our way into the chair and on to the appointment in plenty of time.

Coming up next:  on Wednesday my therapists will conduct a home evaluation with my husband to establish awareness of the space I'll be living in and determine the best equipment to assist me in it; I will continue to work on commode transfers and standing practice to be ready to transition home, hopefully still on the tentatively scheduled 30th of March; once home I will continue to work with my disability lawyer on the Social Security application process; in April I'll have a follow-up with my radiation oncologist, primarily to assess that all my radiation side effects are resolving without complication; in May I'll have an MRI, do lab work, and see my chemo team again.  The fight goes ever on.