Sunday, August 28, 2011

Stormy News

Well this has been an exciting week, on many levels.  Hope all my East Coast friends, family and co-workers are safe and sound.  It's still pretty windy around here, and I have no water, but I slept through most of the drama, and I suspect Sadie did too.  It's been a rough week, especially for D.C., Virginia and the Carolinas, with the earthquake and Irene.  (New Yorkers overreacted just a bit with the earthquake, in my opinion.  I lived in San Francisco for 10 years and had to walk home from work over glass and bricks in the middle of the downtown streets before the looting started after dark in a city with no electricity.  Remember that one during the World Series at Candlestick Park on October 17, 1989?  Now that was a shaker!!)

I'm still processing the stormy events of the last couple of weeks relating to my feeble self, including two consultations scheduled for Tuesday, one with a neurologist and one with a thoracic surgeon.  I'll try to be brief.  On August 9th I finally went completely off all steroids, having tapered my doses since March.  I now believe that going off steroids is worse than being on them.  My muscles went from uncooked spaghetti to cooked spaghetti, my GI track went into shock, I got headaches and, wait for it -- I started getting hemorrhages behind my right eye, filling the white part with blood.  Not a good look.  No wonder little kids stare at me when I go out.  Imagine an alarmingly pale 90 pound woman shuffling around, wearing a scarf (obviously hiding a bald or partially bald head), shaking like a leaf, with a bloody eye.  Would any of you think that that woman was NOT a crack cocaine addict?  Anyone?

Somewhere in the middle of this, I had a CT scan of my chest to follow up with that pesky infection that I warned not to get too comfortable.  I was, shall we say dismayed, to learn that it has grown bigger.  Much bigger.  Time for a lung biopsy.  I hate those.  The only thing that rivals having your bones drilled into is having your vital organs pierced.  Now we get to last week:
  • Monday:  My eye doctor assured me that there is nothing wrong with my eyes.  Good news!  I was convinced that I was getting cataracts (a risk from the chemo and radiation) or shingles.  (Yes, in the eyes.  A woman in one of my support groups had this happen to her). 
  • Tuesday:  Lung biopsy, local sedation only.  I was told that cultures would be grown, which could take a week or two, but that preliminary findings should be in by Friday, the day of my next clinic appointment.  On the way home, my doctor's office called recommending a brain MRI the next day for the headaches.
  • Wednesday:  Brain MRI and my 4th IV in less than 2 weeks (very stressful, since my veins are also like cooked spaghetti.  What is that really skinny kind of noodle?  Vermicelli?)
  • Thursday:  Perfect dental check up.  Good news!
  • Friday:  The Day of Answers; clinic with my transplant doctors.  The brain MRI was negative.  Good news!  The next step is a consult with a neurologist to figure out why the headaches got really bad with these eye hemorrhages (scheduled for Tuesday morning).  My theory is that after being on steroids for 8 months, my eyes are dry, causing the bleeds and headaches.  All are side effects of tapering.  I'm now self-medicating with Tylenol and eye drops.  I think all will be fine here.  The lung biopsy?  Inconclusive.  It only showed inflammation so far.  Assuming the cultures are also not definitive, my doctor wants me to have an "open lung biopsy" for further evaluation and subsequent treatment.  She said that it would be done surgically with scopes to "scoop out the infection."  Not good news.  Hence the consult with a thoracic surgeon scheduled for Tuesday afternoon.  This also means that I'll have to have another PICC line.  Ugh.
I'm not happy about this situation, but every time I tell someone, I burst out laughing.  It just seems so ludicrous that I would now need lung surgery.  I'm going to lobby to have it done asap.  My cough is getting worse, I'm now getting winded, and I don't want my new immune system to be so taxed that I flare with GVHD, requiring me to go back on steroids.  The sooner the better, even if I'm stuck in the hospital over a holiday weekend.  (Weekend TV is so awful!)  I'm going to tell the surgeon that I have to recover by September 13th so that I can go to the taping of the Daily Show with Jon Stewart in New York with Michael, Steve and Francine.  What could be a bigger motivator?
There actually is more good news to report, so let's end this on a better note.  My appetite is slowly getting better.  The tremors keep me from gaining real weight, but I'm tapering off that medication now, so next month I should be able to sign my name again and gain a few pounds.  My stomach is still not a happy camper, and I'm a long way from a cup of coffee, but I've expanded my boring diet.

Also, my birthday was Wednesday!  (The day of my 4th eye bleed and the brain MRI.)  Cathie and Cari brought me dinner, presents and a fabulous dairy free dark chocolate cake -- part of my expanded diet.  (It gets all melty and yummy when re-heated.)  And I had countless birthday wishes on Facebook, cards, phone calls, and more presents.  My biggest gift was just making it this far.  It was the first of many upcoming milestones.  I'm so happy to still be here, I don't even mind the insulting solicitations from AARP!

Another great update is that both teams, Lowenstein Lights the Night (NJ/NY and Palo Alto), are growing with walkers and many generous donations have been made.  See my last post, the link above and my personal homepage about this event.  I have to deal with this lung problem soon so that I'll be strong enough to make it around the 2 mile course.

I have it on good authority that things may be a little rocky for now, but that I'll get through it just fine.  I'll keep you posted as to the surgery date and estimated day of release.  For now, there's not a lot I can do other than watch the trees blow (surprisingly cathartic), read my book on my Kindle, and have myself a piece of melty dark chocolate birthday cake.


1 comment:

  1. Kathy, sorry that you are not able to make lunch, but hope your open lung biopsy goes as well as possible. A belated happy birthday and glad you enjoyed your melty dark chocolate cake!
    Be sure to eat lots more of it!
    Love, Julie


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