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.


Monday, August 15, 2011

Is it really mid August already?

Many of you may remember the days when you would get an e-mail from me asking for a donation for the American Cancer Society's annual Relay for Life event.  I haven't participated in that for a few years now because, well, I've been busy with other cancer related concerns.  My transplant buddy, Linda, who passed away last month from her second relapse of AML (see my last two posts), told me about the Leukemia and Lymphoma Society's annual Light the Night walk, and we planned to participate together. I promised Linda and her family that I would not only beat this disease, but that I would make as much noise as possible to educate people about AML, the need for donors, the importance of research and the need for financial support.

My law firm, Lowenstein Sandler PC, has been sponsoring quarterly events for the past couple of years under a pro bono program called Lowenstein Cares.  So I thought to myself, "Self, wouldn't it be cool if Lowenstein sponsored a team for the Light the Night walk?"  I was planning to participate in Light the Night somehow, but I wasn't sure how the firm would respond to my idea.  The firm, including several individuals, many of whom I hardly know, has been beyond supportive of me, especially over these last two years.  So I shouldn't have been surprised at the speed with which the Pro Bono Program endorsed the suggestion.

We now have an official team, "Lowenstein Lights the Night" for the New Jersey and New York offices, and we even have a team for our California office, "Lowenstein Lights the Night - Palo Alto."  The New Jersey walk will be on Saturday, October 15th beginning at 5 p.m. at Headquarters Plaza in Morristown, and the California walk will be on the same day at Palo Alto High School in Palo Alto.  There are a couple of ways to participate: 

1.  Walk with us.  If you click on the red "Join" button on the bottom of either of the team pages, you will be guided to a page explaining  how to join the team.  Once you join a team, you will then be able to set up your own personal webpage, where you can set your own goal, send out donation requests and invitations to the walk, utilize templates, establish an address book and  make use of other helpful tools.  You don't have to work at Lowenstein to be part of our teams, and I highly encourage my personal local friends to join us in Morristown.  

2.  If you can't join either team as a walker, you can make a donation on one of the team webpages or on my personal webpage.  For general information about the Light the Night walk, click here.

Although the walk is only two months away, I'm optimistic that I'll make it around the two mile course by that time.  My symptoms haven't changed much since my last update -- stomach pain, lack of appetite, tremors and I'm still underweight.  I've had a few bad weeks lately, but I hope to see some improvement soon, since I was finally taken off steroids last week for the first time in eight months.  The problem with cutting down on steroids (as I've done four times now), is that the lower the dose, the more I feel like I've been hit by a bus.  They're evil that way.  But they treat flare ups of Graft vs. Host Disease, which is very serious.  GVHD is also evil, but it's a sign that remission is holding and the transplant is working.  Everything has its pros and cons in Transplant World.  The trick is to focus on the big picture, and in my case, it's very positive.  My next step is to slowly cut down on the other immunosupressant, Prograf (Tacrolimus), which is a pretty intense anti-rejection drug.  Once I'm off Prograf, I should feel stronger, eat better, and hopefully go back to work!

In the meantime, I struggle with a warped sense of time.  On the one hand, it seems like time is standing still.  My recovery is taking so much longer than I ever imagined. Every month I think I'll turn a corner and start to feel like my old self again.  But then I remember everything that I've put my body through, and I realize how resilient the human body can be.  On the other hand, I look at the calendar and can't believe that the summer's almost over.  The seasons come and go, no matter what.  And as my birthday approaches in a couple of weeks,  I remember all that I've survived this last year and where I was last August for my birthday.  Three long time friends took me out to dinner in Phoenix when I was there to move my father into an assisted living campus.  I then came home to another bone marrow biopsy.  While waiting for the results, the litigation paralegals threw me a surprise 50th birthday party at work.  By the end of the week I learned that I had relapsed and was headed for more consults, more treatment and a stem cell transplant, only to then enter the abyss of recovery.

So here I am -- a year later, happy to be here, grateful for all the love and support I've received from so many. I'll never dismiss birthdays as meaningless again.  What better way to mark the milestone than to help raise money for a cause that's so close to home?  The October walk will be here before we know it, and right behind it my 1st transplant birthday on November 17th.  What a great second chance to be young again!