Saturday, February 5, 2011

No turning back now

After Jason's last day of school, he and my mother in law Susan headed for NJ.  Steve and I had one final weekend at home before moving to Boston.  With my stem cell collection already under my belt, I had a few more things to take care of before the official treatment started on Monday, June 11, namely, my last sushi dinner for at least six months.
First I had decided to buzz off my hair and donate it to Locks for Love.  I figured that would go down the drain a whole lot easier than a headful of long, thick curly hair.  There was no way I was doing this in a salon, so I asked my regular hair stylist to come out to the house, and invited my sister Michele for morale support.  But of course I had to put a positive spin on this!  I thought it would be fun to celebrate my transformation into "G.I.Jen" by having the whole process documented by my high school friend and awesome professional photographer, Paul Friedman:  I was planning on creating a little photo album as a keepsake, but Paul ended up surprising me with a beautiful, hardcover photo book as a gift, which I truly love.
A couple of weeks prior to this weekend, I had spent a fun afternoon with a good friend wig-shopping.  In the end, I chose a wig that resembled my "fantasy hair", as if I'd cut and layered my own hair, then flat-ironed it and blew it out straight--a whole lot of work that I would never do in a million years.  I figured, why stick with what I already have?  I should live it up!  I absolutely loved it, and when I brought it home to show Steve and Jason, I thought they might want to comfort me and make sure I hadn't been traumatized from the day, or reassure me that they would love me bald or not.  This is what I got instead: 
Here's an excerpt from one of my emails updating friends and family:

Friday, May 11, 2007
Meet "Jaymie", my alter ego!  Steve is thrilled to have another woman in the family.  She is my new wig!  I think I like her more than my real hair.  I found her at the Dana Farber Friends Boutique, and from the moment I set eyes on her, I knew we were meant to be.  I surprised Jason with my wig on today, and asked, "How do I look?"  He said, "You look beautiful, Mommy!"  I told him it's like a 'hat with hair', for when Mommy cuts her hair off.  Then he said, "I want a hat with hair!"  So we all tried it on--I swear Jason looks like he could be my daughter.  However, Steve looks like he had one too many funnels at a fraternity cross dressing party.

So I scheduled my "extreme hair makeover" for June 10.  Even though I had told Jason I'd be coming home with a matching buzz cut, I just wasn't comfortable changing my appearance so drastically in front of him.  Not only did Jonathan do an awesome "rocker chick" job, but he also touched up my make-up for the photos!  With hair shorter than Steve's, there was no turning back now.  The day ended in a really fun way with a "photo shoot" outside in my backyard.
That night Steve and I treated ourselves to an incredible sushi pigout before heading into our Boston apartment, where I would stay for however many weeks necessary until my immune system was strong enough to return home.  The following morning, Steve and I would begin going to the Boston Medical Center Stem Cell Clinic on a daily basis, and spend much of every day there being monitored throughout the treament.
The whole time I was missing Jason terribly, but I could not believe how incredibly well he was handling my absence.  All of that preparation, keeping him informed, talking with him openly and honestly in terms he could grasp, had really paid off.  If I'd had any doubt as to whether I had made the right decision to tell Jason so much, I didn't now.  I had done the best I could to keep things fun and silly, yet truthful at the same time, as if this was a family adventure we were embarking on.  Not only did keeping things playful help Jason understand and deal with what was happening with me, but it helped keep my spirits up as well, which I believe really enhanced my response to the treatment. 

Sunday, June 24, 2007
Many of you have asked how Jason's been through this whole thing.  Would I be bragging to say that he's been AMAZING?!  We talk on the phone almost every day, and he has so many happy tales to tell.  Playdates with frienes, swimming at the pool, going out to lunch with Nana, BBQ's with Nonna and Pop-pop, birthday parties...he not only tells me which friends he sees, but remembers ALL of your names (mommies and daddies too!).  He knows that "the doctor is keeping Mommy safe" right now and that I can't come home yet, but that I'm getting stronger every day.  I tell him that the doctor will send me home "when I have enough superpowers" and that it'll be a nonstop lovefest!  He never cries on the phone, but does ask very specific questions about my return.  He'll say, "Mommy when you get home, I want YOU to put me in my carseat/play with me/see me go underwater/down the slide/give me a tubby..."  The other day he really tugged at my heart strings when he said, "Mommy, I want you to come home because I miss and love you."  I told him that we just had to be patient, and did he know what the word 'patient' means?  I said it means sometimes we have to wait for things we really, really want, but then when they do happen it's so great.  He says to me (like I'm completely ignorant), "Mommy, I'm big!  I *know* that word.  I AM patient!!"  Like I said, amazing.  Steve and Sue have told me that he does in fact get a little weepy at night, asking for me to come home, but you know what?  That's normal and healthy...I'm glad to hear that.  He has to process this and get it out somehow.  Once they reassure him that I'll be home as soon as the doctor says I'm strong enough, he calms down.

Much to our surprise, I was in and out of treatment in less than four weeks.  We had anticipated being in Boston anywhere from 4-6 weeks or even longer if there were complications, so we were shocked but thrilled when I was told I was strong enough to go home.  My immune system was still quite fragile, much like a newborn baby's.  While blood tests showed the levels of healthy cells rapidly rising, I still had very little resistance to common germs and viruses.  All of my immunizations I received as an infant had been wiped out, so I had no defense against whooping cough, measles, mumps, etc, and would need to be re-immunized over the next couple of years.
The day they ripped that chest catheter out was one of the best days of my life.  I felt a bit like Keanu Reeves getting unplugged in "The Matrix".  I couldn't wait to call Jason and tell him I was coming home, but I wanted to wait until the last possible moment.  I was afraid if I told him and any unforseen problems occured, he would be incredibly disappointed. 
Steve and I went back to the apartment and packed up just enough stuff to go home; we'd move out completely over the course of the next several days.  Once we were in the car, I called Jason to tell him that the doctors had said I was finally ready to come home, and he was ecstatic.
We got to the house a little before Jason and Susan.  I hadn't seen my child in almost four weeks; I kept looking at the clock waiting for him to walk through the door!  I hadn't hugged or kissed or snuggled him since the beginning of June, and was going into serious withdrawal.  As excited as I was, I was also nervous about how he would react when he saw me wearing a scarf on my head.  The last time we saw each other, we had played with my new wig, but he hadn't seen me without my hair.  What if he got upset and cried?  Or worse yet, didn't want to touch me?  All of these thoughts were running through my head when I heard the door open.

Wednesday, June 27, 2007
It was literally like a movie...Jason running into my arms, beaming from ear to ear, me in tears hugging him as tight as a boa constrictor.  Then on top of all the hugs and kisses, he pulled back to look at me and say, "Mommy, you look pretty."  Can this child get any cooler?!
All during dinner, he kept wanting to see my head underneath my scarf.  I was nervous he might be scared or upset, so I decided to show him my patchy head upstairs at bath time (it's just not dinner table material at the moment!).  I warned him ahead of time that it looked messy, and was he ready?  Well, when I pulled off the bandana, he just cracked up laughing!

Over the course of the rest of that year, I gradually grew stronger as the weeks went by, but still had to remain vigilant while my immune system slowly restored itself.  In addition to avoiding sushi and other potential dietary hazards, I needed to limit my exposure around children and adults who were either sick or not yet fully recovered.  This was an opportune time to teach Jason to cough and sneeze into his elbow like a vampire, wash his hands a lot and use hand santizer, which we re-named "Magic Soap".  As predicted, I did experience several infections such as bronchitis, cellulitis, even shingles.  I hadn't had an ear infection since I was a child, but I got one of those too, and boy did it hurt!  At one point, I was alone with Jason and had to get myself to the hospital.  I looked him straight in the eye, and said, "Jason, I need you to be ten years old today, okay?"  He helped me gather my belongings, being sure to include my childhood stuffed puppy dog, Peanut.  "Take Peanut with you, Mom," he said, "He'll help make you feel better!"  Once we arrived at the hospital and were given an exam room, the nurse asked Jason how old he was.  "I'm four," he said, "But today I'm TEN!"  As frustrating as these episodes were, I maintained my positive outlook as best I could and told myself that every illness only strengthened my immunity. 
By the end of 2007, my hair was slowly growing back and I was getting back to a normal routine, working out at the gym, taking care of Jason, seeing friends and family, and preparing for the holidays.  Each day I had more energy, strength and stamina as new cells were produced in my body.  Hoping to draw attention to amyloidosis and increase awareness among patients and doctors, I submitted my story to the Discovery Health Channel's hit TV show, Mystery Diagnosis.  Much to my surprise, the producers contacted me in October, and told me that they wanted to shoot an episode about my experience.  In November, right before Thanksgiving, the Mystery Diagnosis team traveled to Boston and spent three exhausting but exciting days with me taping for the show.  I was thrilled that such a high profile program would now be shining a light on this rare and very often misdiagnosed disease.  I felt so fortunate to have had a doctor knowledgeable enough to properly diagnose me early enough to receive treatment, and wanted to help educate the general public and those in the medical community about this life-threatening disease.  The episode aired on April 7, 2008, and continues to be shown during repeat time slots.  Just last week, as a woman was leaving my gym, she said, "I saw you on TV last night!"  I'm amazed at how often the program is shown and how many people still come up to me and Steve telling us they've seen it.  If my story prompts just one person to ask their doctor to test them properly for amyloidosis, then this whole experience will have been worth it.
By December of 2007, my six-month post-transplant evaluation was approaching, and I was anxiously awaiting this appointment.  The results of these tests would determine how effective the treatment had been, and what the next course of action, if any, would be.  I was feeling good physically, but was still experiencing the edema in my legs and feet.  As hard as I tried to think positively, I couldn't help but wonder what I would do if the transplant had not eradicted the disease from my body.  In just a couple of weeks I would either be celebrating or preparing to start the entire process over one more time.

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