Sunday, February 20, 2011

Two Steps Back... (or are they?)

This has been another busy month.  In addition to fighting the CMV virus (see last post), I contracted another hard to treat virus and an infection.  Then, a week ago Friday (after the doctor's office was closed, of course), I noticed an uncomfortable rash spreading everywhere.  It felt like a bad sunburn.  I knew immediately that I was having another attack of GVHD -- Graft v. Host Disease.  I was almost through with the steroids I had been on for 10 weeks to treat the first rash, and I was looking forward to getting off them completely that next Monday, gaining some weight, and feeling stronger.  When I called the on-call nurse on Saturday morning, she upped my dosage to get me through the weekend, and on Monday, my doctor gave me a whopping one time IV dose to "put out the brush fire."  I had been tapering down to 10 mg. every other day, and now I'm starting all over with 100 mg. daily.  I came so close!

Since steroids suppress the immune system, I was told that the CMV virus, which was almost completely under control, will come back and that I have to stay on the really strong medication that makes me pretty sick.  Again, so close!  It will take about another 2 months to get where I was 2 weeks ago, but it's important to beat down the GVHD once and for all.  I'm told this is all perfectly "normal," and that setbacks like this just come with the territory.

The good news is that the steroids rev me up and I have a little more energy with a little better appetite.  I'm trying to take advantage of this with the weather nice every now and then.  Today is Day 97, so maybe with the passage of time and I won't feel as bad as I did before. 

As I sat at the doctor's office that Monday, getting the 5 hour CMV infusion and the brush fire suppressant, I was pretty discouraged.  Then a big, burly, healthy looking man with tattoos on his neck and a larger than life personality, took a chair for a treatment.  Listening to him talk with another man who was donating stem cells, I learned that he's had a really rough GVHD journey.  His GVHD attacked his gut and ate into his intestines, requiring surgeries and other awful procedures.  He also went blind and had to have the inner lenses of his eyes surgically repaired so that he could see again.  Now he's getting treated with a process called photopheresis.  This is very effective for bad cases of GVHD, in that it siphons off the patient's blood from one arm, treats the T cells in that blood (where GVHD is found) with a special drug, after which ultraviolet light is then used to clean everything up and the blood is then returned to the patient in the other arm.  The problem is that these treatments take all day, are usually 2-4 days a week, and can go on for a year or more!

As I listened to him, I was stunned at his positive attitude, sense of humor and resilience.  The word inspiring doesn't come close to describing this man.  I sat in my chair, humbled and embarrassed at my flirtations with self pity.  I really have little to complain about.  If things don't go exactly as I hope they will, so be it.  Getting a new immune system and having it work takes time, and I've been very fortunate so far.  My two steps back are very baby steps compared to many in my situation. 

I probably won't get the bone marrow biopsy this week, with these recent medical events.  But I should have it soon and know the results around mid-March.  Knowing that I'm in remission with my new stem cells will be a big sign of healthy days to come.

In my December 24, 2010 post, I mentioned that my mother fell, hurt herself and was in rehab.  I also reported that the crisis was subsiding.  Not so much.  She developed a serious infection and was in rehab and then a group home for over two months.  The day that she moved from the rehab center to the group home, her neighbor discovered that her house had been broken into.  The thieves took her medications, blank checks, her car and anything else they thought looked valuable, while tossing her entire house into orbit and fleeing before everything landed on their heads.  Crisis back again.  Since the end of January, I've been trying to help coordinate the clean up, house repairs, identity theft, police investigations and financial matters, while my mother tries her best to recover physically and emotionally.

As usual, I approached this like a trial with logistics keeping me focused and feeling purposeful.  But, as with any trial, nothing could have been done without a team.  With the tremendous help of my mother's neighbors, the Keatings, all the wonderful professionals, my sister, Lynda, and some of her friends, and my best friend from grade school, Sheryl (along with her husband, Rick), Mom is now home -- safe, healed, and slowly getting back to her life.  My Timing Angel kicked in a couple of days before my mother came home when Sheryl, whom I had lost track of since the 1980s, found me online.  We connected on the phone, she expressed an interest in helping, and she has been assisting my mother in countless ways ever since.  She and the Keatings, who check on my mother almost daily, deserve a special shout outs.

One big relief for me is my father's progress in the nursing home.  His dementia has slowed, and he sounds better than he has in several years.  In fact, he was named Resident of the Month for March, and nominated for Valentine's Day King!

I'm so thrilled to have Sadie home again, bringing life, humor and purring cuddles to my world again. She and her Pittsburgh cousin, Mikey, peacefully co-existed for 2 months, although Sadie clearly saw herself as in charge.

Over the next few weeks, I plan to go to physical therapy a couple of times a week to build endurance and muscle strength, take some walks and see a few friends.  Here's to the winter thaw and the many reminders we encounter every day of all that we have to be grateful for, even if life presents us with setbacks along the way.  With Sadie, Bruce Springsteen, Netflix, and my Kindle to help me stay grounded, I'm doing just fine.



1 comment:

  1. Wow Kathy! You are amazing! I was feeling like Master of the Universe because I successfully hooked up my new Blue Ray DVD Player. You are the Millennium Master of the Universe!

    Sending you warm California vibes and much love,
    Jill Hagan


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