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.

Why I Love Birthdays!

It’s been a busy birthday season in our house!  My dad and sister both had birthdays in April, Steve’s was in May, and both Jason and my nephew have birthdays in June. 

I can’t help but think back to when I received my diagnosis, and was told what my prognosis would have been had my doctor not been so astute in looking specifically for amyloidosis.  Researchers are working tirelessly to increase awareness of amyloidosis in the medical community, so that doctors will request the special tests necessary to detect it sooner.  While I felt fortunate that my disease was caught early enough for proper treatment, I couldn’t help but wonder at the time if I would see my 10^th wedding anniversary, or Jason’s 5^th birthday.  Even though I was a good candidate for a stem cell transplant, the doctors didn’t mince words in describing how intense and aggressive that treatment would be, and the risks involved.  I wanted to see Jason start kindergarten, learn to read, take off his training wheels.  I left my doctor’s office unable to fathom my little boy, who hadn’t even turned four yet, growing up without me.
Four years, two bone marrow transplants and two hip replacements later, I couldn’t be more grateful to have seen Jason turn 4, then 5, 6, 7, and now, 8 years old.  Rather than worry about a relapse, I keep my eyes on the prize by staying focused on Jason going to middle school, having his Bar Mitzvah, and learning to drive (you didn’t think I wanted to leave *that* to Steve, did you?!).  It’s easy for anyone, let alone a parent, to get stuck in a “why me?!” type of mentality.  I credit much of my healing to concentrating on what *is* working, rather than what *isn’t*, and focusing on a future of health and vitality.  I visualize going somewhere fabulous with Steve for our 15^th wedding anniversary (or instead of a trip, jewelry would work just fine, Dear), doing something big for Jason’s “double digit” 10^th birthday, or finally achieving my dream of going to Canyon Ranch for my 50^th birthday (or perhaps we can push it to 45, Honey??). 
Every birthday that comes and goes, whether mine or someone else’s, fills me with a sense of happiness and gratitude.  You won’t find ME complaining about getting older, in fact just the opposite!  In 2007, as I drove away from my doctor’s office, if you had told me that there would be a “gift” in this whole experience, I would have thought you were crazy.  But now, looking back, I can honestly say that things do happen for a reason, and many good things have come from what was originally a frightening situation.

Gift #1:  I appreciate my body
And I don’t mean just how I look on the outside, but the health and proper function of the inside.  From a very young age, I remember having poor body image and not feeling confident in how I looked.  Years of ballet with very slender girls, taught by a former principal dancer of the Boston Ballet didn’t help, and I remember trying various diets and exercises in an effort to look like the models on the cover of Seventeen magazine.  Even throughout college I was self-conscious about my figure, and endured years of negative self-criticism.  When I entered graduate school and began walking all over Boston and teaching group exercise classes, I finally lost quite a bit of weight and achieved an envious size 4.  But I didn’t feel any less insecure; in fact I continued to pressure myself into “looking” a certain way, especially once I began working as a personal trainer.  I continued to obsess about how I looked, like most women, before my wedding, and during and after my pregnancy. 
One thing this entire experience has taught me is to appreciate the *inside* of my body and how lucky I am that is healthy and working properly once again.  While I admit I eat well and exercise in an effort to stay at my “happy” weight and size, it is no longer the end-all, be-all of my existence.  I’m proud to be 42—with the insides of a three year-old!

Gift #2:  I am more “present”
I used to get so hung up on the house looking perfect, things going according to plan, or finishing the dishes/laundry/errands before I could relax and enjoy my family.  One thing I learned from this experience is when faced with your own mortality you don’t care about the dishes being clean.  Prior to my illness, I had a hard time going to bed until everything was “done”.   I’m ashamed to say I would find my mind wandering as I was playing with Jason or reading him a goodnight story (“As soon as this is over, I have so much to do...”).  While I wasn’t proud of this distraction, I told myself it was just part of being a busy parent.  After my diagnosis, I instantly became much more present and mindful of the moment, whether with Jason, Steve, or my friends.  I didn’t want those special moments to end, and I certainly didn’t want to waste them by mentally running down my to-do list.  In fact, I found that the more present I was, the more I enjoyed it.  How wonderful to actually *relish* a bedtime story, a trip to the pool, a movie with popcorn under a blanket?

Gift #3:  Little things don’t upset me
After buzzing my hair off…TWICE…I’m so happy to have it back, you’ll never hear me complain about having a bad hair day.  When I need to cancel plans to stay home and take care of Jason when he’s sick, I’m glad I’m around to do it.  When I turned 40…then 41…then 42…I didn’t complain about getting older.  I celebrated!  When there’s 3 feet of snow on the ground, I won’t lie—I don’t love it.  But things could be so much worse.  Rather than focus on what’s not working, I try and shift my attention to what *is* working.  Jason and I call it “changing the channel”.  Steve just did the laundry and accidentally washed and dried a brand new top that required a cold, gentle cycle and NO tumble drying.  Needless to say, the floral appliques were curled up and falling off.  Was I happy about this?  Of course not, but as soon as I started feeling upset, I thought to myself, “Change the channel!”  It’s only a tank top (thank goodness I bought it at TJMaxx).  Rather than waste energy on the negative, I do my best to look at the positive.

Gift #4:  I’m able to help others
In an effort to increase awareness about amyloidosis in both the general public and medical communities, I’ve shared my story with our local paper, and been featured on an episode of Mystery Diagnosis.  One local woman, frustrated after numerous tests failed to explain months of bizarre health symptoms, actually took the article to her doctor and demanded to be tested for amyloidosis.  She tested positively, and was treated successfully at Boston Medical Center.  She underwent her first stem cell transplant at the same time I was going through my second, and she and her husband have since become good friends.  I also receive phone calls and emails from people all over the world who have seen the Mystery Diagnosis program, and communicate regularly with other newly-diagnosed patients via email support groups.  Most recently, I became friendly with another lovely woman who is currently being treated at BMC.  I am grateful that my experience has made it possible for me to offer support and guidance to others going through the same scary time.

Gift #5:  I don’t take things for granted
My diagnosis came completely out of the blue—I was a young, healthy person, an avid exerciser, a nutritious eater.  I don’t smoke, do drugs, or drink too much.  I don’t even bake in the sun, so to be told that without prompt and proper treatment my prognosis was 12-15 months was quite a shock.  If anything, this experience has given me a greater appreciation for my life and how I live it.  Instead of a New Year’s Resolution, I dubbed 2011 “The Year of Awesome”!  I want my coffee to be awesome.  If we go out to eat, I want the food to be awesome.  If I’m hanging out with friends, I want that quality time to be awesome.  We never go to bed angry, and I make family time a priority.  Things can turn on a dime at any moment, so I’m mindful of how I spend my time and energy.
A few years ago you couldn’t have convinced me that anything positive would come out of this experience.  I could never have imagined that it would lead me to write a book to help other families, but if I had to go through all of that to get to this point, I can honestly say I am more deeply fulfilled and happier now having faced that challenge and emerged a stronger person both mentally and spiritually.

Mommy's Superpowers Go...to the Big Apple!

Last month I had the opportunity to attend the BookExpo America in New York City with my publisher and friend, Lisa Akoury-Ross.  This was my first professional trade show, and it was quite the experience!  The BEA is one of the largest annual publishing exhibitions in the industry, and I was grateful for the chance to display, sign and distribute my book, as well as network with lots of other authors and industry professionals.  Among the celebrity authors in attendance were Mike Holmes from HGTV's "Holmes on Homes", Kathie Lee Gifford, Julianne Moore, Ice-T and one of my favorites, The Food Network's Ellie Krieger (who is just as sweet and beautiful in person as she is on her program, "Healthy Appetite"), just to name a few.

 

By far, the most memorable new author I met was 6 year-old Finnoula Louise, who was signing copies of her new book, "'Aminals', Animals".  The line for Finnoula's book went on for yards, and her next book, "Cookies, Cookies", which includes recipes for delicious kid-approved, gluten-free treats is coming out this fall!

 

Lisa and I managed to balance work and pleasure, and took advantage of our hotel's proximity to Times Square and "Restaurant Row".  The first night we enjoyed a terrific dinner at a little French brasserie called Pigalle, and took a stroll by Radio City Music Hall on the way back to the hotel.  Tuesday night we walked down "Restaurant Row" and found the perfect little Italian spot, Cara Mia.  We grabbed a table right next to the open shutter doors where we could people-watch during dinner.

By far the best meal of the week was at Trattoria Dell'Arte on 57th and 7th.  Steve and a few other friends highly recommended the restaurant just a couple blocks from our hotel, and we definitely saved the best for last.  The food was incredible, the wine fantastic, the waiter adorable, and the service was stellar.  After waking up at 5:30 a.m. three mornings in a row, networking nonstop and eating on the fly, it was great to enjoy a memorable meal to cap off the trip.  Here's me and Lisa standing next to Katie Couric's favorite table, underneath just one of the many "body part" sculptures adorning the walls at Trattoria Dell'Arte:

The BEA is so huge, that it took me over an hour to walk from one end to the other, as I browsed the booths.  Practically every publishing house you can think of had a booth, and I was looking specifically to see if any of them carried a children's book similar to WDMSG?  I remember years ago when I was searching for an appropriate picture book to read with Jason, I didn't have any luck either in stores or online.  I thought for sure somewhere in the ginormous Javits Center exhibition hall I might find a book like mine to compare to.  Would you believe in that entire show I couldn't find a single title that was not disease-specific?  I did find a couple of lovely books for families dealing with breast cancer, Alzheimer's, grief, and parents injured during military duty.  But for children coping with a parent or family member facing any type of serious illness, I found nothing. 

While I was certainly happy to see how unique my book is, I was concerned that it still might be difficult for families to find it as they search online.  While I'm working hard to spread the word about my book with my monthly newsletter, Facebook page, and this blog , I'd like to increase the visibility online to families out there who could use a book like mine and can't find it.  If you wish, please feel free to post a brief review of WDMSG? on Amazon and/or Barnesandnoble.com (these links go directly to my book's page). Any feedback, comment or criticism you can offer may be useful in helping the book "pop up" when certain search terms are used.  Thanks so much, I really appreciate it!

First Press Release hits the Web!

Just thought I'd share the link to my very first Press Release.  This PR thing is all new to me, but I hit the jackpot when my long-time friend and experienced publicity consultant, Sari Alperstein, offered to help promote the book with me.  I have been so impressed with her professionalism and expertise; she's almost TOO good at what she does because I haven't had a spare minute since I hired her!  Sari and I met more than 15 years ago through our hubbies, who are college roommates and fraternity brothers.  Not only is she a talented publicity rep, but she's a "supermommy" herself raising three incredibly handsome boys.  Click on the link below to see the great Press Release Sari put together for me.  Thank you Sari!

Survivor of Rare Disease Jenifer Gershman Releases Children's Book Where Did Mommy's Superpowers Go?