Thursday, February 17, 2011

There are no coincidences

At the end of 2008, I was thrilled to get the results I was hoping for from Boston Medical Center.  My bone marrow was still normal, the swelling in my legs was starting to diminish, and my kidneys were still continuing to slowly improve.  The doctors could safely assume from my tests that no amyloid was being produced in my bone marrow, and told me no further treatment would be necessary at that point.  I was "free to go" until my annual evaluation, which I will need for the rest of my life.  I felt like jumping for joy!
The children's story I had written during that last bone marrow transplant was now sitting in my desk drawer.  I was busy with the holidays and in great spirits after receiving this good news from BMC, and it was just getting more and more difficult to carve out the time to research publishers and create a fabulous query letter.  With Jason now in kindergarten, I was enjoying the new routine, and volunteered regularly in his classroom.  It was so nice to finally "live" my life and not have to prepare for another relocation or medical treatment.  I had also found the perfect part-time job at Global Fitness Center, and was so happy to be back at work in the fitness industry.  Even though I was just working at the front desk, the hours were perfect and I loved getting back to my workouts.  I was getting back up to my normal speed, actually enjoying the daily grind of foodshopping, laundry, cooking meals, taking care of the house.  But I wasn't quite yet 100%, and at the end of the day, I was much too exhausted to focus on my book project.  I would collapse into bed around the same time as my 5-year old son.
About a year later, in April 2010, I was getting excited to see my friend Ali, who would be visiting from the west coast.  She hadn't been to Boston since Jason was only five months old (doesn't he look comfortable with "Aunt Ali"?), and it had been two years since I had gone to Los Angeles to visit her.

Ali was coming to Boston to speak at the Simmons Women's Leadership Conference that weekend, and I was looking forward to spending some long overdue, quality time with her.  We spent a relaxing afternoon with our mutual friend Stephanie strolling on Newbury Street and around Back Bay.  We had a lovely lunch, did some shopping, and even enjoyed some afternoon cocktails.  After a little down time at Stephanie's South End condo, we capped off the perfect girls' day with an amazing sushi dinner at Douzo.  The day really brought back memories of when Ali and I both lived in Boston in 1994, while I was getting my master's degree in Social Work at Boston University.  We were both teaching group exercise classes at City Gym in Kenmore Square (which is no longer there, I believe), and would often walk up and down Newbury Street window-shopping.  We had a few favorite places where we loved to eat, and it was always fun to sit outside and people-watch.

Before Ali's speaking engagement, Stephanie and I planned on attending a networking cocktail party.  Stephanie was eager to make some business contacts, but I was just along for the ride, happy to be spending time with both of them, and excited to see Ali "work her magic" for an enormous ballroom-full of adoring fans.
While we waited for Ali to arrive, Stephanie and I mingled and introduced ourselves to a few people.  The room was full of women entrepreneurs, some with well-established businesses, and some just starting to venture out on their own. Stephanie instantly hit it off with another fellow image consultant, and while they were talking I happened to overhear the conversation next to me.
"I'm a book publisher," I heard one woman tell another and my ears instantly perked up.  When they both noticed me next to them, they invited me into the conversation.  After we all introduced ouselves, I asked one of the women, "What type of books do you publish?"  I had already jumped to the conclusion that she would not be able to help me with my children's picture book--she probably worked on 'tween' vampire novels or cookbooks or travel guides.
"I publish all kinds of books," she told me, "I actually help authors self-publish, so really any type of book."  I could not believe it--what were the chances that I would be at a women's business networking event, not even looking to network, but just spend time with a couple friends, admire Ali's speech, and have some drinks afterward, and now I'm standing right next to a book publisher?!  I instantly felt a connection with Lisa; she was bubbly, high-energy and engaging.  I admired the fact that she had over 20 years of experience in the publishing industry, was a mom with two children, and had started her own business.  I liked her right away, and told her about the little story I'd written.  Lisa appeared so interested, that for the first time since I wrote the book, I felt hopeful that it might have a chance at being published.  She gave me her card and we went to go see Ali at her pre-speech "meet and greet".
When I called Lisa later that week, I told her my entire story, how I had explained it to Jason and helped him understand what was happening with me, and how well my method had kept him from being frightened or overly worried.  Since I hadn't been able to find a children't book appropriate for my situation, I had written my own, but hadn't made any progress publishing it.  Lisa was so supportive and assured me I had a great story to tell, offering to read my manuscript. 
The more I spoke with Lisa, the more impressed I was with her background in publishing, her professional experience and expertise, and the quality of her work.  She patiently and openly answered all of my questions in detail, explaining the entire self-publishing process, and spent a fair amount of time speaking to both me and Steve on conference calls.  Both Steve and I appreciated Lisa's honesty, integrity and work ethic, and enjoyed her excitement and enthusiasm regarding my book.  There was no question we had found the perfect person to bring my story to life.
And so Where Did Mommy's Superpowers Go? had officially begun it's journey from a simple Word document on my laptop to a beautifully illustrated book, which I cannot wait to share with you.

Monday, February 14, 2011

Round Two--Time to write my book!

Preparing and going through a stem cell transplant is no walk in the park.  But having already been through one, getting ready for a second one felt like a well-oiled machine.  I felt like a football coach with a white board and a sharpie, making a crazy diagram of circles and "X's" and arrows, so all the major players knew exactly where they needed to be and when.  My mother in law almost burst out laughing when she arrived for "duty" to find a three ring binder titled "Nana Sue Control Center".  In it was Jason's summer schedule, printed in daily format, including any meals which were being delivered and by whom, as well as playdates with address and phone number.  The freezer was stocked, my bags were packed, hair had been buzzed, Jason's birthday had been celebrated, sushi dinner had been savored.  I was ready to get this over with for the last time.

It was during this second treatment in the same Boston apartment we'd rented a year prior that I wrote Where Did Mommy's Superpowers Go?  I spent a few days working on it, just a simple Microsoft Word document, which I knew would require and benefit from professional editing should I ever choose to publish it.  I wasn't intent on becoming an author; I just wanted to create a book that would be helpful to other families going through the same experience as ours.  There were plenty of books out there for families going through cancer, alcoholism, divorce, depression, or death and grief.  But what about parents diagnosed with a rare, life-threatening illness that few people had ever heard of?  What about the families facing a disease with literally no public awareness or attention?  There were plenty of diseases out there in addition to amyloidosis with no annual walk, no colored ribbon, no awareness month or celebrity spokesperson.  Just from watching (too many episodes of) Mystery Diagnosis  and House, I knew there were countless diseases with little to no recognition at all.  What if these patients wanted some kind of picture book for their young children to explain what was happening to them?  I wanted to write a positive, uplifting story that families could use to help their kids understand the changes in their physical appearance and abilities without frightening them.
I tolerated the second round of high-dose chemotherapy and the stem cell transplant as well as before, and again was well enough to go home after a few weeks.  I could have sworn when I saw Jason after all that time, his face had changed and his voice was different.  And as expected, it was an awesome homecoming:

Friday, June 27, 2008
This year instead of calling Jason to tell him I was coming home, we chose not to, so as not to distract him from his playdate and swim lesson.  When the door opened, I was sitting with outstretched arms.  When he saw me, he promptly pulled a Lucille Ball and fell over on the kitchen floor!  Having him climb into my lap for a big hug after almost 3 weeks was like a drink of water after being in the desert.
Last year when I came home, it was just as wonderful, but at the age of four, he was much more 'demanding' of me physically, wanting me to get his juice, play games and do things for him as a way of making the whole thing seem "normal".  This year, he let me sit or lie down as I needed, and proceeded to surgically attach himself to my side like a conjoined twin.

Despite getting through the treatment fairly smoothly, a second bone marrow transplant is very aggressive, and my body was definitely recuperating at a much slower pace.  I was experiencing much more noticeable fatigue, as well as anemia.  It was challenging getting through the rest of the summer, but my goal was to be back up to normal speed by the time Jason started kindergarten in the fall.  When I was struggling to keep up with Jason and needed to rest, I would remind him that I didn't have all my superpowers back yet, and he would know exactly what that meant.  I was so glad that we had found a way to communicate about my condition and my limitations, and at only five years old, Jason "understood" that despite the changes he saw in me, I was still the same mommy.
When Jason started elementary school in the fall, it felt like a fresh start for both of us.  He was a big kindergartener now, and I had some time to look into publishing my book.  I started with some internet searches, and found a lot of websites that allowed authors to self-publish for a fee with a few clicks of the mouse.  I was wary about this method, and unable to determine whether the fees were reasonable or exorbitant, as I had nothing to compare them to.  Not to mention, I wanted some professional editing of my book, and needed illustrations.  Steve suggested I contact a high school friend of his in the area who was a caricature artist and had published an illustrated travel book:

Mark was incredibly helpful sharing what he had learned about book publishing and after exchanging some long emails, I decided that I was more comfortable with the traditional, old-fashioned route of submitting my manuscript to a major publishing house.  I knew this method would involve lots of work on my part; researching which publishers would be interested in my book, writing query letters, and handling plenty of rejection.  But I didn't feel comfortable with self-publishing over the internet.  I thought that if a publisher was willing to take on my project, it would be worth the extra time and effort on my end to be provided editorial and design services, as well as professional illustrations, which would result in a higher quality book.
Over the next few months, I went to the library and bookstore and compiled lists of appropriate publishers, and tried to educate myself on the industry.  It was overwhelming.  I contacted a few people who had either published children's books or worked in that area, and I was told how competitive and challenging it would be.  At times I would get discouraged and start to wonder if perhaps my book just wasn't meant to be, even though I knew this attitude wasn't going to get me anywhere.  After the intense couple of years I had just had, I was mentally and physically exhausted.  I wanted to keep up the same positive, gung-ho attitude for this project as I had for both of my transplants, but with the holidays approaching, I was feeling burned out and not up to navigating the ins and outs of a completely unfamiliar industry.  Getting my little children's book published started to seem like a daunting task, and feeling like I needed to save my energy to heal and get through the holidays, I printed out my manuscript and tucked it away, with the intention of picking it up again when I felt stronger.  Where Did Mommy's Superpowers Go? was filed away.  At the time I had no idea that a year and a half later, I would be in just the right place at the right time to meet the perfect person, when I wasn't even looking, who would transform my little Word document into the beautiful, special story that I had envisioned.

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.

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.

Wednesday, February 2, 2011

Looking on the fun side

After my talk with Jason that day in March of 2007, I thought to myself, "Well that went pretty well!"  I was pretty happy with how I had explained what was going on with me, and how he had responded.  I felt that I had used some good analogies to describe my illness, treatment, and the changes he would notice in me, and given him the information not just in terms he could understand, but in a positive, upbeat way.  I breathed a huge sigh of relief to see that he didn't appear frightened or upset in any way, and knew that I had done the right thing for both of us.  I decided that going forward, both Steve and I would treat this journey like an adventure...yes, it would have its ups and downs, but we would make it as fun as possible.  It was important to me that Jason, even at just four years old, know what was happening along the way and always have his questions answered.  The last thing I wanted was for him to experience lots of clandestine whispering and conversations behind closed doors, which I thought would be even more scary for him.  Of course, we made sure that he had just enough information to feel involved and empowered, and at the same time the social worker in me always asked him how *he* was feeling, if he had any questions for me or the doctor.  Often I would pass his questions on to my doctor and come home with the answers, and I could see how that made him feel valued.
Over the next several weeks, as I made arrangements for Jason and myself in preparation to move to Boston, we turned it all into a fun project.  Fortunately, he was already excited for my mother in law to arrive, as she typically did every summer, and to have her with us for a couple of months.  I showed him an impressive schedule of summer activities and playdates, day trips with my parents, and most importantly, a train ride down to New Jersey to see his cousins.  I loved how he wanted to play "doctor" and would pretend to give me "strong medicine" to "get rid of the bad guys", which showed me that he had really been listening that day.  I even let him play with my new wig, and I think being silly was really good for both of us.  It helped Jason not to be scared, but also lifted my spirits in anticipation of our being apart.
I knew that when I came home after the stem cell transplant, I would look different, but I wanted to give Jason some idea of what other changes to expect.  I explained to him that after the strong medicine took away my "superpowers", my body would be weaker and not able to fight off germs as well.  We talked about how important it would be to wash our hands lot, and I took him with me to TJ Maxx to pick out pretty bottles of colorful hand soap that matched the bathrooms.  I showed him how to cough and sneeze like a "vampire" into the crook of his elbow, and we gave hand sanitizer a fun, easy name to remember:  Magic Soap! 
With all of this going on, I didn't let it stop me from celebrating Jason's fourth birthday at Jump On In, an indoor inflatable playground.  It was a perfect day, and so important for me that he enjoy that celebration with me, Steve, his family and friends before I had to leave.
The real test of how my upbeat and truthful approach had worked came when it was time to have my chest catheter inserted.  This was an outpatient procedure done a couple of weeks prior to the chemotherapy and transplant.  I would go home with two tubes visibly sticking out of my chest, in order to have my stem cells collected the following week.  Once that process was completed, it would finally be time to pack up and move to our furnished Boston apartment for the next month or two until I was strong enough to return home.  Things had gone so well with Jason up until this point, and he seemed to be handling the whole situation with such maturity, I was afraid that seeing this contraption sticking out of my chest would really scare him.  I wrote about it in my journal:

Friday, June 1, 2007
Jason had a big day with Nana today.  First school, then soccer, then the pool for the rest of the day.  He was fast asleep in the car when they came home, and we couldn't even wake him.  He finally woke up and right away asked to see 'where the medicine' was going to go.  When I showed him the catheter, he wasn't scared or upset!  He was totally cool seeing the tubes--he's so awesome.  He was very gentle around me and before he went to bed he brought me his stuffed puppy dog to help me feel better!  "If it hurts, Mommy, I can get you a band-aid," he said.  Wow.

We continued to involve Jason as much as possible the last couple of weeks I was at home.  He accompanied me and Steven to Boston one day so he could see what our apartment looked like.  I wanted him to be able to picture where I would be living, and know that it was only a car ride away.  Each night when I returned home from having my stem cells collected at the hospital, I spent as much time as I could with him, taking care of the bath-book-bed routine and relishing every moment. 
As those last few days flew by, I really felt like the last grains of sand were draining out of the sand timer.  Fortunately, we had scheduled his trip to NJ with Nana on the train a few days before I needed to go to Boston, so instead of my leaving him, he would be the one to depart first on a fun little vacation.  This would allow me a few days to finish packing and donate my hair to Locks For Love, both of which I thought would be too upsetting for Jason.  We had arranged for them both to head to the train station directly from school.  I would be able to attend the last day of preschool and his "graduation" ceremony, and he would have an exciting train ride to look forward to.
Jason was so looking forward to finishing school and seeing his cousins, that I started to wonder if he might have forgotten that I would be leaving for quite a long time, and that I would not be at home when we returned from NJ.  Or perhaps I had done such a terrific job turning this into a fun experience that he had no reason to be sad.  Either way, I was incredibly touched when, on the last morning of school, which would be my last morning at home with Jason for 4-6 weeks, he walked in to wake me with kisses as usual and said, "Mommy, it's our last snuggle." 

That was a bittersweet day for me.  On the one hand, I was relieved that my decision to talk openly and honestly with Jason had been a success.  The fact that he was able to ask questions and re-phrase what I had told him showed me that our little games had helped him to understand what was going on.  As we hugged and kissed goodbye in the preschool parking lot, I was glad that he had something fun to look forward to, and wasn't focused on my leaving.  And ultimately, it was my four year-old son who made me realize that maintaining a positive and playful attitude would maximize my own recovery.

Tuesday, February 1, 2011

The power of the pen

I'm a big believer in writing down my goals.  Whether it's a simple "to-do" list, or a combination of short and long-term dreams, I jot it down.  Steve is always teasing me that if I don't make a note to myself to floss my teeth, it won't get done.  I have pads of paper and something to write with by my bed, in the bathroom, in every bag, all through the house, and of course, my main "office":  the car.  Of course I admit I'm one of those people who will forget something if it's not written down.  But in addition to the daily tasks and appointments I want to remember, I have turned to writing down the bigger, more significant life goals I hope to attain.  I have a friend who, shortly after writing down every specific quality she desired in her future husband, met the man who possessed every one(and of course married him!) .  While I don't believe every wish will come true immediately after it's written, I do feel that to have something in writing keeps it in the forefront of your mind, and in your consciousness, which helps guide you towards that ultimate goal.  Putting your goals, wishes, dreams, and desires on paper, whether it's finding the perfect partner, the ultimate house, or just a few trendy wardrobe items you need for the season, is like planting a seed.  You keep coming back to it, and eventually it will grow.
As soon as I was diagnosed with amyloidosis, I started a journal.  Not a super-high-tech-sophisticated-online-blog like this one, but a pretty one I found at a stationery store.  Through much of my first stem cell transplant I journaled pretty regularly, and I had more than enough time on my hands to do so.  Once I came home and eased back into the normal routine, more and more weeks would pass between entries, but I kept going back to it off and on.  Every now and then something inspires me to go back and flip through the pages and I'm always amazed at how many goals I've achieved.  Now my journal looks like it's been corrected by a teacher, because I like to put a big red "X" near things that I've accomplished.
I thought it would be interesting to share a few excerpts occasionally in this blog since so much of where I am today started with a journal entry.

Tuesday, March 20, 2007
Yesterday afternoon I recieved the DVD The Secret in the mail.  No card, no familiar address. 
I started watching the DVD last night and....I was changed!  I want Steve to watch it too...I want to share it with all my friends!  "What you focus on expands".  No more being glued to the internet and amyloidosis-related websites...I'm focused on being healthy, healed and DONE with all of this.
"What we think is what we become"...indulging our darker impulses only leads to dullness and confusion.  From this point forward, I believe I am healing at this very moment, I'm visualizing the wounds on my kidneys shrinking and disappearing, and they are returning to a perfect, healthy state.

Sunday, April 15, 2007
Maybe I was meant to write a children's book from this experience?  There is hardly anything on Amazon that deals with a parent or mommy being sick except for cancer-related topics.  I don't have cancer...maybe my book won't necessarily be about amyloidosis (that's too big a word anyway), but just the experience of a parent having a serious condition, needing chemo-like treatment and having the side effects, as well as needing to be separated for a period of time.  Is this what I was meant to do?  Every situation has a lesson, or a gift; how does this situation serve me?  Perhaps I'll write a children's book to help kids cope with separation due to illness?

It's very cool to look back and see how much of what I wrote several years ago has come to fruition.  In addition to journaling, I've also made vision boards on large pieces of thick cardstock.  Remember how we used to make collages with words and pictures cut out of old magazines?  That's exactly what they are, and they're pretty fun to do.  They were never done in a day...I just kept adding to the posterboard until it was full, and then I would start the next one, and just keep working on it.  I have three huge vision boards which I keep tucked between my bureau and the wall of my bedroom, so every now and then I can pull them out and see which dreams have become reality.  I took the same idea and created a vision binder out of a pretty 3-ring binder with those peel-and-stick photo pages.  I love flipping through this book of inspiration and seeing how far I've come.
With the amount of time I spend at the computer, I decided to merge these two ideas over the last couple of years.  One day I sat down and created an Excel spreadsheet with my goals one, two, five and 10 years out.  Here I write in detail every aspiration I have, whether it be my own personal health and fitness, our family finances, travel plans, or details of our dream house.  I revisit this document every few months and update it, but the key is to write down the goal as if it's already happened.
Another way I put my goals in stone is very simple...I name a file folder for them.  "What you focus on expands" when I create folders for emails I wish to save, I name them for the result I'm shooting for:  "Total Perfect Health", "Bestselling Book", and "Our Dream House" are way more positive and inspiring than "Medical Crap", "Book Info", and "House Stuff".  So far the "Total Perfect Health" folder is working for me, and we have made some nice changes to the house over the past couple of years.  I wonder what that "Bestselling Book" folder will bring?!

I set up a Facebook page for my book here:!/pages/Where-Did-Mommys-Superpowers-Go/142354199157873
Come visit and click "Like" so I can share more illustrations and updates with you!