Change the Channel--Cultivating an Attitude of Gratitude

What could possibly be good about learning that you have a rare, life-threatening disease?  What’s the upside of hearing that you need aggressive treatment as soon as possible, or you may not see your child’s next birthday?  Where’s the “gift” people speak of when you experience something this earth-shattering?  And how exactly am I supposed to appreciate the experience the Universe has bestowed upon me?

When I was diagnosed with amyloidosis, trust me, I was less than thrilled.  I had a son who was barely four years old; I was about to celebrate my 10^th wedding anniversary.  I was terrified of what chemotherapy would be like, and even more afraid of what would happen if treatment didn’t work.  I cried for days, wondering why this was happening to me, what I’d done to deserve this, and how my family and I would get through the experience.

Up until then I’d been the kind of person that believes everything happens for a reason.  During the years we struggled with infertility, I convinced myself our baby would arrive when the time was right, and when Jason was finally born, I felt all those unsuccessful cycles were necessary in order to have him.  When I broke my leg in 2006 and was laid up in a cast for 12 weeks, I figured the Universe was trying to send me a message loud and clear to slow down, stop trying to do so much, and give more undivided attention to my family.  But when I learned that my own body was turning against itself, despite years of being a healthy eater, vitamin-popper, fitness nut, and nonsmoker, I simply could not understand how or why something this crappy could happen to me.  Suddenly, my stomach would churn at the phrase, “everything happens for a reason”.  Really?!  It just didn’t seem fair.

Then in my mailbox one day I received a package from an anonymous sender (who has since been identified!).  It was a DVD called The Secret, and after watching it, my outlook turned around immediately.  It was my first introduction to The Law of Attraction, and I was so inspired by its powerful message, that I wanted to learn all I could about how to use it to help me get healthy again.  After watching The Secret several times, I read the book by the same title, as well as several others on the topic, plus a couple of great DVD’s (What the Bleep Do We Know, and You Can Heal Your Life by Louise Hay).

The primary message that resonated with me was that my energy needed to be focused on what I wanted, not what I didn’t.  Whatever thoughts and emotions I was having would only create more of those thoughts and emotions.  So if I was feeling angry, miserable and helpless, I would continue to manifest those feelings and results in my life.  I certainly did not want to create more misery and negativity, quite the opposite.  I wanted to recover and heal, and come through this a better person.  Staying home all day in my pajamas waiting to learn the reason for my diagnosis was no longer a conducive way to spend my energy; I certainly didn’t want more of that.  Yet I was also well aware that positive thinking was no guarantee of remission either, but it certainly couldn’t hurt.  At the time, I had no idea what lay ahead for me, but decided from that point forward whenever a negative thought or emotion occurred, to “change the channel” to a more optimistic way of thinking.  Since I didn’t know (or care) what the reason was for my diagnosis, I decided instead to cultivate an attitude of gratitude, and try and find things to be thankful for along the way.  While I knew that positive thinking was no replacement for traditional medicine, I considered optimism to be an essential part of my healing and recovery, and necessary for my medications to be as effective as possible.

I started by redirecting my focus to what was working in my life.  I began to make a conscious effort to put a positive spin on every negative thought that entered my mind.  I was thankful that a treatment existed for my disease, and that I lived near the leading facility in the world for amyloidosis.  I felt incredibly grateful for the support of my family, and the incredible circle of friends who selflessly rallied around me.  I appreciated the commitment and expertise of the doctors doing their best to make me well again.  And most of all, I thanked my lucky stars to have a loving husband who I could depend on, standing by my side the entire time.

When I returned home after several weeks in treatment, I was so happy to be near Jason again.  I was still very weak and limited physically, but instead of moping about what I couldn’t do with him, I redirected my focus on what I could do.  I enjoyed being able to sit and play games with him, snuggle under blankets for popcorn and a movie, give him a bath, read stories at bedtime.  I soon realized that I still had so much to be thankful for, and quickly shifting my focus from a negative to a positive thought truly made a distinct difference in how I felt.

Despite my commitment to the glass being half full, my spirit was still being tested.  Six months after my first bone marrow transplant, I learned I’d have to do it all over again.  Once I recovered from my second treatment, I found out the medications used had caused my hips to deteriorate.  Six months later I realized I needed to replace both of my hips, which led to two major surgeries followed by months of rehab.  However, my practice of “changing the channel” has become a habit, almost second nature.  I’ve also come to see that perhaps there was a reason for this entire experience after all.  I’ve been able to help and support other patients newly diagnosed with amyloidosis, and increase awareness of this disease through newspaper articles and TV appearances.  I’ve created a unique resource to help children cope with a critically ill family member, regardless of diagnosis.  And even though I’ll need to be tested every year for the rest of my life in order to see if the disease returns, I’ve learned that the real “gift” of this journey was an attitude of gratitude to last a lifetime.  This is truly a gift I’ll pass on to Jason, and one I hope will be handed down to his own children.

Thank you, Boston Parents' Paper!

If you have kids, then you know that Boston Parents' Paper is required reading!  I've been a regular reader for the past 8 years, as it is a wealth of information and family resources for $0!  This month, WDMSG? received a lovely review on page 14.  To see it, click here, then click on NEW!  Our Current Edition.  Need to find some fun ways to spend the next few weeks before school starts?  Don't forget to check out their day-by-day monthly calendar on page 36 for some great ideas to savor the rest of the summer!

On the Bookshelf | Brandeis Magazine

As a graduate of Brandeis University, I was so proud to see "Where Did Mommy's Superpowers Go?" mentioned in the recent alumni magazine!  Check out the review here:

On the Bookshelf Brandeis Magazine

(and yes, if you MUST know, I graduated 20 years ago!  EEK!)

5 Tips to Care for the Caregivers

A few weeks ago I had my annual evaluation at Boston Medical Center, which involves three days of tests and consultations with the medical team.  Steve accompanied me each day, just as he has done every year since my initial diagnosis in 2007.  In fact, it seems we’ve been “doing this drill” for so long that we’ve found ways to make it enjoyable and as strange as it sounds, we actually look forward to the time together! 

Every year, no matter how good I feel, I can’t help but feel a bit apprehensive; no patient wants to learn that remission has turned to relapse.  While I can’t keep this thought from entering my mind, I do choose not to dwell on it, and Steve is great at helping me stay positive when I start to slip.  Fortunately, this year’s results were excellent, and I attribute much of my healing and recovery to Steve’s unwavering strength and support over the years. 

When I broke my leg in 2006, not only did I need help at home but I couldn’t drive.  Steve picked up the slack (in addition to his long work hours) without missing a beat.  During both stem cell transplants in 2007 and 2008, he was amazing.  Every morning he packed a bag of food for us to take to the clinic, and he was in charge of dinner most nights (he even gave up sushi while I had to adhere to a neutropenic diet—now *that’s* devotion!).  He did the food shopping, errands, covered my catheter site before every shower, kept all of my prescription bottles organized and made sure I got all of the correct medication at the right time four times/day…all while continuing to work remotely.  He was by my side every minute, which was lucky for me when I passed out in the BMC parking garage…he caught me before I hit the concrete.  Steve never lost his sense of humor and always found a way to make me laugh even at my worst moments (I think Steve must have played with every item and inflated every surgical glove in every exam room I was in).  He allowed me to whine when I was feeling miserable, cry when I needed to, complain when I felt like it, and vent my frustration.  Not only did I have a lot of extra weight and swelling due to the edema, but the steroids put weight on me as well, and combined with the loss of my hair, I never felt more unattractive in my life.  Steve never flinched at my changed appearance, and was just as cuddly and affectionate as usual.  At my worst moments, Steve continued to make me feel as beautiful as ever, and tell me how much he loved me.  Even at my lowest points, Steve kept my spirits up, reassuring me that this would all soon be behind me.

Just when we thought the worst was over, I found out the medications used in my treatments had caused a degenerative bone condition in my hips.  In 2009 as my hips got worse, Steve once again had to pitch in more, and in addition to his own busy work schedule, had to take on more of my responsibilities with the house and Jason.  That year I had a total of four hip surgeries; two in an effort to preserve my hips, and when those failed, two more surgeries to replace them both.  Steve spent so much time at Boston Medical Center that one day in the elevator he said hello to a familiar nurse, and she replied, “Hi, nice to see you!  Remind me, what department do you work in?”  Steve knew then that the two of us had spent WAY too much time in the hospital!

I spent the early part of 2010 recovering from having both hips replaced.  As my mobility improved, I was able to take more tasks off of Steve’s plate, and he was gradually relieved of his duties.  Now our lives are about as close to normal as they’ve been in a long time, and I attribute much of that to Steve’s commitment and devotion not just to me, but our marriage and family. 

I was incredibly lucky to have such a supportive partner during this challenging time, especially because I know for a fact that there were many times when I was not the easiest patient!  I was emotional, depressed, frustrated and impatient.  It was very hard for me to see Steve have to do my jobs in addition to his own, and I often felt guilty that he was “stuck” with the extra burden of caring for me.  But Steve never complained (although he may have told me to “put a sock in it” on more than one occasion), or lost his sense of humor (“no Steve, I do *not* need a sponge bath!”), and never let the circumstances take away from quality time with Jason.  I am still in awe of how he balanced it all so well.

Whether your primary caregiver is a spouse, a sibling, a parent, an adult child, or a team of friends, it is never easy to be on the receiving end of so much help, especially if you’re a mom--*we’re* supposed to be the nurturers and caregivers for everyone else!  Accepting the help is like putting your oxygen mask on first—in order to heal, you need to put your health on the top of the priority list.  Caregivers complement our treatment protocols; consider all that extra help an essential prescribed medication necessary for optimal healing.  Without our caregivers’ generous and selfless support, how can we expect our medication to have maximum effect?  Their care and companionship helps our bodies and minds relax and become more receptive to treatment.  While you’re working on getting better, here are a few ways you can honor the caregivers in your life:

1.)    Remember to check in:  As the patient, everyone will constantly be asking “How are you?  How are you feeling?”  Once you’ve answered, suggest the person check in with your caregiver and ask them how they are doing, and if there’s anything they may need.

2.)    Give them the tools:  If your caregiver is doing a lot of cooking they may not be used to, provide them with some easy recipes or suggestions.  I had a lot of time to rest and read, so I flagged simple recipes in cookbooks, or tore them out of magazines.  If I had the energy, I made out the shopping list for Steve, so all he needed to do was follow directions.  Create lists of essential phone numbers so your caregivers have information in one place.

3.)    Keep a list:  If you have friends assisting you, keep track of who is doing what (perhaps one friend is picking your kids up at school, while another one is doing your grocery shopping, and a third is accompanying you to treatment).  When you are well enough, you can write thank you notes and find ways to reciprocate the favor.

4.)    Give ‘em a break:  This is SO important—full-time caregivers need a well-deserved respite to recharge and rejuvenate.  Make sure that you both agree on how and when your caregiver can get away and have some free time.  Since I needed someone with me at all times during my transplant, my parents would come into Boston on the weekends so that Steve could go home, spend time with Jason, sleep in, and go out for a beer with the guys.  I was happy, he was happy, and my parents enjoyed a “weekend sleepover” in the city with me.

5.)    Find support:  There are plenty of support groups for patients, both in the form of meetings as well as online email groups, but caregivers can benefit from their own helpful network.  Check with your medical facility for support groups and services specifically for caregivers.  Here your spouse, partner, family member, adult child or friends can openly communicate their feelings about what’s happening, share any struggles they may be facing, and hear how other caregivers are coping.

July Baystate Parent Magazine

Whether I'm working or just working out, every time I walk into Global Fitness Center in Stow, there's a stack of Baystateparent Magazine right by the door.  Every month I love checking out the great articles which cover various parenting issues, health/nutrition topics, current local events, newsworthy moms and tons of resources for things to do with the kids.  Not to mention there's always an *adorable* little cover "model" on the front cover!  This morning I picked up my new July issue and there on page 13 was the color cover of my book with a nice little mention!  I was honored to be recognized by BSP, voted Best Parenting Publication in North America for 5 years.
So if you followed the link listed in BSP and are visiting my blog for the first time, welcome!  You might want to start at the bottom (beginning) to learn a bit more about me, my story, and how WDMSG? came to be written.  The book is based on my own personal experience when I was diagnosed with a serious health crisis right before my son's 4th birthday.  Because my particular disease was quite rare, there were no children's books out there for me.  In order to prepare my son for what was happening, and minimize his fear and worry, I created my own story, comparing myself to a weakened superhero to explain why I was sick, and why I had to leave home for a while for treatment.  My truthful, but upbeat story worked so well with Jason, and he understood it so clearly, that I decided to write a non-disease specific book for other children coping with a critically ill parent or family member.  Actually, WDMSG? is especially useful for families who are diagnosed with those less-known diseases which receive little awareness, attention or recognition, and therefore have very few resources available.
If you or someone you know would like a copy of WDMSG?, you can get a "sneak peek" inside the book at www.tinyurl.com/buymommypower.  For those of you who live in the Acton/Maynard/Concord/Sudbury area, the book is available at Willow Books and Cafe in Acton, as well as at the Acton, Maynard, and Sudbury branches of The Paper Store.
Please feel free to share your thoughts, comments and feedback, I welcome any critique you have to share!  To see what people have been saying about the book, please visit the book's page on Amazon and BarnesandNoble.com.  Whether you wish to give the book 1 or 5 stars, all reviews are incredibly valuable in helping the book "pop up" when people are searching for a positive, upbeat story to help explain a grown-up's serious illness to young children, which does not specify any particular disease, diagnosis or treatment.  I hope to hear from you!
And if you haven't already, be sure and pick up your own FREE copy of Baystateparent Magazine!

Hope to see you there!

And the results are in...

Last week was a busy week with almost four days of annual "check-up" appointments both in Boston and in Concord.  No matter how satisfied you are with a good outcome, once you've been diagnosed and treated for a serious disease, you can't help but be just a little bit wary before these regular evaluations.  For the first time in almost 5 years I feel fantastic; my energy is normal, I'm on no medication, and have no symptoms.  My life is pretty much back to normal on many levels, but when you know you're going to be tested up, down and sideways, there's always that lurking feeling in the back of your mind, what if they find something?  Whenever I catch myself slipping, I quickly "change the channel" and immediately start practicing my positive affirmations, telling myself over and over "I'm in perfect health/my body is working perfectly/my tests will come back completely normal" (although I do admit sometimes I have to repeat these mantras like reps of bicep curls for fear of a teeny little shred of doubt worming its way in to my head).
Yearly evaluations are always scheduled for Mon-Wed, with Monday being the longest and most intense day.  Vials upon vials of bloodwork, every bathroom test you can think of, vitals and EKG, echocardiogram, chest x-ray, consultations, and the ever-so-popular bone marrow biopsy.  I even have a special technique for that oh-so-special procedure; 2 extra strength Tylenol about 1 hour before, and an Ativan under the tongue about 20 minutes prior.  Doesn't make it any more enjoyable, but certainly takes the edge off!
The next couple of days include consultations with nephrology, hematology, and a review of the initial test results, as well as an amyloidosis support group.  The one benefit of all this sitting around in between appointments is we get to meet and chat with the nicest people; including those who've already been treated as well as people who are recently diagnosed being evaluated for treatment.  Having been through the entire process twice and knowing all of the doctors and staff allows both Steve and I to offer some support and guidance to those just starting on this journey, and I consider that the benefit of having had to go through this experience.  Being able to connect with other patients makes me feel like something good came out of something pretty crappy.
I received my test results at the end of the week, which was perfect timing, right before Father's Day.  In order to really appreciate the improvement, I'll give you a brief description on how amyloidosis affected me.  The disease is a malfunction of the bone marrow, in which plasma cells start "folding" incorrectly.  When this happens, they cannot be broken down and metabolized properly, and they start building up in the blood.  All these wacky plasma cells start sticking together and attaching to different organs like chewing gum.  Amyloid fibrils can attack any organ, but for me, they were clogging up my kidneys and damaging them.  Left unchecked, the disease eventually leads to organ failure.
As a result of the amyloid damage, I was losing protein in my urine.  Protein is supposed to stay in your blood, and acts like a sponge, holding on to fluid, which keeps your blood thin and loose.  Instead, as I lost protein, the levels of protein in my blood went down, causing a few problems.  First, because there was a build up of extra fluid, I had terrible edema, or swelling in my belly, legs and feet (this was the first sign that something was wrong which sent me to the doctor).  Second, as extra fluid leaked out of my blood into the tissues, my blood was less "watery" and I was at higher risk of blood clots.  Third, as my blood protein levels went down, my body tried to make more by churning out protein from my liver.  The only problem with that is with every protein molecule your liver makes, there are 2 cholesterol molecules attached to it.  So my cholesterol was extremely high, starting around 350, getting as high as over 500!  I had the cholesterol of a stick of butter, and was put on a statin.
So every year, we look for certain numbers.  First, I always want to see the protein in my urine going down as much as possible (I have no more swelling or edema, so it's improving and shows that my kidneys are no longer being damaged and are actually healing).  Second, I'm always interested in my cholesterol, both the total number (which should be under 200), as well as HDL and LDL.  And the most important test is the levels of plasma cells in the bone marrow.
I'm happy to report that there's less than 240 mg of protein in the urine (normal is 150 or less; at diagnosis I had between 8000 and 16,000 mg of protein!), that is awesome!  Because that number is coming down, my total cholesterol is about 205, which is pretty healthy.  The bone marrow biopsy showed normal amounts of plasma cells, between 5-10%, so that is awesome.  But here's the extra good news...there are also two immunofixation tests that look for abnormal proteins, blood (serum) and urine.  After 2 stem cell transplants, both of these tests showed a "barely detectable trace" of paraprotein, literally described as a "smudge" (that's actually what it is, a shadow, a visible marker).  They saw this "smudge" in tests done in December 2008, June 2009, and June 2010, no changes, it was just there.  Since my test results have continued to improve steadily, they assume that it's leftover crap floating around, but they can't guarantee that it's not new amyloid being produced.  However, tests done this week show the same smudge in the serum tests...BUT NOT IN THE URINE TESTS.  It has *disappeared* from the urine immunofixation tests!  This gives us hope that perhaps in the next year or so, it will disappear completely from the serum tests as well.
In the meantime, this is awesome news, and we are all so happy.  Every year around this time the fleeting thought of a relapse does cross my mind, how could it not?!  I'm sure this is what every patient experiences.  But all I can do is choose not to dwell on that, using my affirmations as a tool to help me stay positive.