Wednesday, February 9, 2011

Not quite out of the woods

On January 18, 2008, Boston Medical Center gave me some good news and bad news.  The good news was that the chemotherapy wiped out almost all signs of the disease, indicating that my type of amyloidosis was very sensitive to the particular chemotherapy drug I was given.  My bone marrow biopsy had come back normal, as well as a few other tests.
However, there were still some 'barely detectable traces' of amyloid remaining on some of the tests, described to me as a "slight smudge".  My doctors were thrilled with my response, and called mine "an excellent partial response", but could not call it a "complete response" as I'd hoped.
While this was very good news, ultimately it meant that I needed to repeat the entire treatment all over again.  Putting things in order for Jason, having the chest catheter inserted, preparing to leave home, packing up and renting the apartment, undergoing another high-dose whollop of chemotherapy and the stem cell transplant, and losing the hair that had finally started growing back.  Fortunately, I had enough stem cells frozen from my initial collection, so I was spared having to go through that part of the process again. 

January 18, 2008
If I was scared or nervous the first time around, now I'm *pissed*.  This crap has chosen the wrong body to fool around with.  Clearly, amyloidosis doesn't know who it's dealing with.  Last summer, I was in touch with my spirituality, and felt all zen...this time I'm going in with both fists flying.  I am NOT messing around.

This may come as a shock to all the friends and family who were so impressed with my positivity and sense of humor throughout this whole ordeal up until this point, but I spent that entire Martin Luther King Jr. holiday weekend in my pajamas.  I think I may have brushed my teeth once or twice.  I barely remember showering.  I really allowed myself to wallow and get pissed off.  I cried off and on for three days.  I was angry and frustrated and depressed and gave myself permission to mope.
By Monday morning, I had snapped out of it.  I had gotten all the whining out of my system, and while it had felt good to let myself have my moment of misery, I wasn't about to stay there.  I needed to stop focusing on what was wrong with my life and instead concentrate on everything that was going right.  By shifting my attention to what was good and positive, I realized how much I had to be grateful for, which put me in a much more powerful place to go through a second round of this aggressive treatment.  I had almost five months until treatment started, and I was determined to make the most of my time with my family.
Even though I wasn't quite out of the woods yet, I really wanted to turn my experience into something positive, and generate more knowledge and awareness of amyloidosis.  I had sent my story to countless TV shows, news programs, newspapers and magazines, hoping to draw attention to this rare, life-threatening disease .  I wanted to educate those in the medical community less familiar with amyloidosis, and enable them to properly diagnose their patients more quickly so that optimal treatment could be provided.  Mystery Diagnosis was the only program that responded, and we were very excited when the episode we'd taped back in November aired on April 7, 2008.  Since then, the Discovery Health Channel, which is now the Oprah Winfrey Network (OWN) *still* airs our episode during repeat time slots.  Steve and I still hear from people who happened to see it, and it is particularly gratifying when amyloidosis patients from all over the country contact me by phone or email thanking us for shedding light on this disease.  I've heard from several people who, after watching the show, immediately asked their doctors to request the specific tests necessary to find amyloid in failing organs.  Once an answer had been found to their mysterious symptoms and declining health, they were able to receive proper treatment.
That same spring, our weekly community paper contacted me and asked for an interview.  I was more than happy for another opportunity to share my experience and generate more awareness of this disease.  When Jason and I opened our mailbox several weeks later, we were shocked to find our story on the FRONT page!
Not only was my story in our local paper, but the article appeared in all of the publisher's affiliates as well in many surrounding towns.  The reporter who had interviewed me sent me an email shortly after the article was published and had this to say:
"All of the papers are getting a ton of e-mails and phone calls from people -- men whose wives have amyloidosis, women who are concerned their husbands or parents have it, people who have heard about it on the TV show House. Thank you for letting me help you share your story."
I was so glad to hear that feedback; that was exactly what I had hoped would happen after the Mystery Diagnosis episode and the newspaper article.  In fact, one Massachusetts woman who had been suffering unexplained health problems for months read my story in the paper and literally took the article to her doctor and demanded to be tested for amyloidosis.  She was diagnosed with the disease, and got in touch with me through the reporter.  Steve and I invited her and her husband to our home, and were able to answer all of their questions about what to expect during treatment.  In fact, we were able to undergo our stem cell transplants--her first, my second--at the same time at Boston Medical Center in June 2008.  Not only were we able to support each other, but our husbands had each other to lean on as well.  I wondered if I hadn't been diagnosed with amyloidosis; if I hadn't done that newspaper article, would my friend have ever been properly diagnosed and treated?  Her experience alone made me thankful for everything I'd gone through--for this one person, it had all been worth it. 
Preparing for Round Two was surprisingly easy.  I explained to Jason that there were a few more "bad guys" who snuck through the last time, and that I needed to take the strong medicine one more time to get rid of them.  Together with my friends and family, we were like a well-oiled machine, organizing transportation and playdates for Jason, meals for him and Susan while I was away, and for a short time after I came home.  Luckily, we were able to rent the exact same apartment, so it felt like we were returning to a familiar time-share.  I squeezed in Jason's 5th birthday party celebration, his annual physical, and his big graduation from preschool--in the fall he'd be headed for kindergarten!  Steve and I scheduled our pre-neutropenia sushi dinner, and I was feeling so at ease with the whole situation that I even had my hair buzzed off again--at the salon, this time!  When I left the salon looking all "Rocker Chick", it didn't bother me a bit.
My friends had completely outdone themselves the year before, organizing a wonderful dinner before I left for Boston, and showering me with the most thoughtful gifts that brought me so much joy during my treatment and recovery.  They had already done so much for me and especially Jason, so I was really surprised when they insisted on having a lovely brunch for me on Mothers' Day.  I couldn't have asked for more, enjoying a lovely morning at one of my favorite restaurants with my nearest and dearest friends, and their company really lifted my spirits.  Not only did they spend part of their own Mothers' Day away from their families to be with me, but they completely took me by surprise when they presented me with an incredible, handmade quilt they had all been working on secretly for almost 5 months!  Each girl, including my mom, sister, and mother in law, had created their own square.  Each piece had been put together into a breathtaking, king-size blanket!

I was deeply touched, and brought the quilt to the clinic each day during my treatment.  It made our Boston apartment feel more like home, and warmed me up while chomping down on ice cubes during the chemotherapy infusion.  But most importantly, I felt literally surrounded and enveloped by the love and positive energy of my friends and family during my second transplant, which had a profound effect on my healing.

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