Tuesday, October 11, 2011

From "Jonnie" to Jeans: Getting Back in Shape After A Medical Setback

Remember the movie “Groundhog Day” with Bill Murray?  Every day he’d wake up, and he’d be in exactly the same place he’d been the day before.  After several days of realizing his life wasn’t moving forward, he started to remember how the day was going to play out, which people he’d bump into and what events would take place.  Each day he’d find himself stuck in the same situation as the day prior, but once he knew what to expect, he’d choose how to behave and react differently, often with hilarious consequences.

This is how I felt over the course of five years as I recovered from one health crisis, just to be hit with another.  In 2006, I broke my leg.  Up until that point I had been working hard for three years after Jason was born to get rid of the baby weight, and had finally reached my goal.  I enjoyed running a few miles on the treadmill several times per week when suddenly I found myself laid up in a cast for about 12 weeks.   Once I was able to start physical therapy, I discovered that I had completely lost my former levels of strength, stamina and muscle tone (don’t even get me started on what my leg looked like compared to the other one when the cast came off).  Not only did I have to regain the function, balance, strength and flexibility in my injured leg, but I had to build up my cardiovascular fitness and lower body strength from the very beginning.

I was surprised at how quickly it all came back.  I approached my physical therapy with the same commitment and focus I used to shed the pregnancy pounds, and did the exercises religiously.  In about three months’ time I was able to accompany Steve on a business trip to London and Paris.  We brought Jason with us, and I easily walked everywhere with him and a stroller in tow during that two week excursion, glad that I had been so consistent with my rehab.

Less than six months later, I was diagnosed with amyloidosis, and told I’d need high-dose chemotherapy followed by a bone marrow transplant.  I knew the aggressive treatment would bring my current workout routine to an abrupt halt for four to eight weeks, which would really set me back, and I would definitely need to ease back into exercise gradually over the course of several months afterward.  During the treatment, I was even more sedentary than I’d been with my broken leg, but now in addition to muscle atrophy and a significant decline in my cardiovascular fitness, the chemo had wiped out all of my blood cells, including red cells (which carry oxygen to your body), leaving me breathless just after climbing a dozen stairs.  My bone marrow was busy producing a whole new immune system, which required what little energy I did have.  Not only were my muscles out of shape, but I was profoundly fatigued from the toll the treatment had taken on my body.  I could accept the weakness and lack of energy, but the medications I continued to take exacerbated the fluid retention and weight gain caused by the amyloidosis, making me feel even more uncomfortable and self-conscious about my heavier figure. 

Nonetheless, as soon as I was cleared by my doctors to work out at the gym, I signed up for a few sessions with a personal trainer, since I was a bit hesitant to exercise on my own.  I scheduled a Fitness Assessment, which confirmed that I had lost a significant amount of strength, flexibility, endurance, stamina and muscle.  I wasn’t thrilled with this news, but had a starting point and was able to track my progress.

A little more than six months later, I was feeling stronger, firmer and more energetic.  I no longer needed a trainer to supervise me, and I was working out almost as often as before I’d had chemo.  A second Fitness Assessment showed that I had made measurable improvements across the board, and I was looking forward to setting some new goals.  My enthusiasm was crushed when I found out I would need to have a second bone marrow transplant, repeating the entire protocol a second time.  Another huge wallop of chemo, wiping out the new immune system my body had worked so hard to build, would bring me right back to Square One.  I’d have to start from scratch all over again. 

I had my second stem cell transplant in June, and returned home within four weeks with the same weakness, fatigue and extra pounds of fluid caused by the medication.  The yo-yoing back and forth was starting to wear on me, and my mood would take a nosedive whenever my clothes didn’t fit.  For the fourth time since Jason was born, I went from running on the treadmill to walking.  I traded the 15 lb. dumbbells for three pounders, and switched from Spinning to yoga.  I listened to my body; some days I made it to the gym, and some days I had to recover.  I did what I could and never pushed myself beyond what I could do comfortably.  By the fall I was back in Cardio Kickboxing, proud of the quicker recovery I seemed to have had this time around.

Convinced my medical issues were history, I was excited to put the past behind me and focus on the future as a healthy, fit, active mom to Jason, who had just turned five.  He was now in kindergarten and had just begun taking Taekwondo classes.  We both thought it was pretty cool that I was familiar with some of the kicks and punches he was learning, and Jason was quite impressed when I was able to show him a roundhouse kick.

Shortly after my martial arts performance, I began to feel pain in both of my hips.  I figured I had pulled a hip flexor showing off to Jason—but *both* of them?!  I took it easy on the kickboxing and running and kept my workouts low impact, but over the course of the next couple of months, the pain seemed to grow worse, and more intense as the day wore on, to the point where it would be difficult for me to climb the stairs at night.
Having had so much chemotherapy over the past year, combined with the fact that it had put my body into menopause, I assumed that perhaps the toxicity of the treatment had weakened my joints or thinned my bones; perhaps this was early arthritis of some kind.  It didn’t seem too much of a stretch that if my body had been through the wringer, maybe it was aging at some accelerated rate.

I headed to the doctor, who scheduled an X-ray.  Convinced this was a cartilage or soft tissue problem rather than a bone condition, I asked for an MRI.  She obliged me and ran both tests shortly before Christmas, informing me that I should receive the results about a week later.

On the afternoon of New Year’s Eve, I was driving white-knuckled through an afternoon blizzard.  The snow was coming down heavy, the roads were getting slippery, visibility was getting worse, and Jason was with me in his car seat.  When my cell phone rang, I could see it was my doctor, and not wanting to miss the call, I answered it.  My test results were in.  I told him I couldn’t talk and drive at the same time, and asked to call him back once I’d returned home.

When I finally spoke to my doctor, I knew I would not have been able to drive in the dangerous weather and hear the news at the same time.  While my X-ray was normal, the MRI showed that I had areas of dead bone in both of my femoral heads.  This was a condition called avascular necrosis, or AVN, which had occurred when the steroid medications involved in my treatment had interrupted the normal blood flow to my hips.  Without proper blood supply, the bone had died, leaving dead tissue inside the bone.  The pain and stiffness I was feeling was a result of the swelling and accumulation of fluid to this injured area, affecting my range of motion.  This was a degenerative condition which over time would lead to the “collapse”, or flattening, of the femoral head, making it impossible for it to move freely and comfortably in the socket, ultimately requiring a hip replacement.  Unfortunately, my doctor was unable to tell me definitively if or when this would in fact happen, but there was certainly not much I could do other than try and reduce the weight-bearing load on my hips, and take medication for the pain.  I could use crutches; keep off my feet as much as possible.  All I could think was:  Does this prescription come with a nanny?!  Because I have a kindergartener at home!

That was probably the worse New Year’s Eve ever, improved only for the company of some close, long-time friends who thankfully came over for dinner and offered their support and encouragement.  Rather than kicking off the New Year with the typical resolutions to eat better and exercise more, 2009 started off with the arduous task of researching the best orthopedic surgeons in Boston, to find out what I needed to do next. 

Instead of the usual excitement preceding my 40th birthday, I spent the next several months meeting with specialists, taking pain-killers 24/7, walking with crutches, and watching my workouts dwindle to a short bout on the recumbent bike and the upper-body cycle.  Once again I was lucky to live near Boston, as the chair of the orthopedics department had been recognized as one of the city’s best doctors in Boston Magazine, and was one of the few surgeons in the country knowledgeable about AVN, but the damage in my hips was too extensive to benefit from his cutting-edge stem cell surgery.  It seemed my range of motion decreased with each passing week; I was taking medication first thing in the morning and right through the night.  This was no way to live at the age of 40 with a six year-old.  Just six months after that New Year’s Eve diagnosis, I was calling Dr. Einhorn begging him to replace my hips.

I had my left hip replaced in September of 2009, and the right hip done five weeks later.  The only exercise I was doing for the 10 weeks post-operatively was physical therapy.  Whereas most people would be afraid of gaining weight sidelined for this long, the opposite happened to me.  My activity was so low, and what little I was doing was so painful, that my appetite was next to nothing.  I really had to be starving to drag myself to get something to eat.  But it wasn’t just fat I was losing, it was muscle.  The pendulum had swung to the other extreme and now I was much thinner than normal (but not in a good way).

For what I hoped was the last time, I was committed to my physical therapy and treated my rehab like a full-time job.  By February of 2010 I was walking without a cane, and able to carry a small bag—a HUGE accomplishment!  As my PT tapered off, I knew it was time to make the transition back to the gym, and build my muscle mass back up.  Again I invested in a trainer to get me started, who concentrated on functional exercises and core strength.  I also began Pilates for the first time which increased my strength, range of motion, and flexibility.  Now, two years post-replacement, I still do Pilates, and have resumed all of my favorite workouts (except for running):  Spinning, cardio, strength-training.  I can move so naturally that people who don’t know me have no idea when they look at me that I have two prosthetic hips.

If you’re an active person, being incapacitated by a significant medical injury, treatment, or surgery can really do a number on you, not just physically, but mentally and emotionally as well.  As women, we are notoriously hard on ourselves, and feel enormous pressure to look trim and healthy from a very early age.  As a fitness professional, I enjoyed working out, but also felt an obligation to “look the part”.  It’s not easy, but you can cope with the missed workouts, weight gain and loss of fitness during a health crisis.  Here are some suggestions:

1.)    Pick a mantra:  I like “This too shall pass.”  Choose an uplifting phrase that you find comforting.  Repeating a positive affirmation can help ease the frustration.
2.)    Look within:  After so many years preoccupied with how I looked on the outside, I shifted my focus to taking better care of the inside of my body.  I considered a healthy diet, sleep, and stress reduction just as important as medication in my recovery.  Even if I wasn’t happy with how I looked in the mirror, I made sure I was working on improving my inner health as well.
3.)    Visualize:  Research has shown that elite athletes who visualize their events actually cause their muscle fibers to fire as if they were actually physically competing.  Sitting quietly in a relaxed state and visualizing yourself performing your favorite activities with health and vigor can have a pronounced, beneficial effect on your recovery.  I would listen to meditative “spa” music and imagine myself back at the gym running on the treadmill or in my favorite classes.
4.)    The mind/body connection:  Along the same lines, there is a strong connection between the mind and body.  Suppose you have a nightmare in which you are running away from an attacker.  You might wake up in a sweaty, breathless panic, your pulse racing and your body shaking with fear.  But you’re safe in your bed.  It was just a dream in your mind, but your body doesn’t know the difference, and responds appropriately as if it were reality.  The same is true with visualization:  the more you can practice visualizing being healthy and active again, the more your body can “believe” and move towards healing.
5.)    Go back to basics:  Don’t try and pick up where you left off; invest in a personal trainer, workout DVD's, or at the very least, work out with a buddy.  Sometimes medications or a long hiatus from exercise can cause dizziness or extreme fatigue, and you want to be on the safe side.
6.)  Be a germophobe:  Gyms are notorious for spreading germs, no matter how clean they are.  After chemotherapy, your compromised immune system may not be able to fight off the bugs as well as before.  Bring your own sweat towel, carry hand sanitizer with you, and use disinfectant spray or wipes (if available) to clean the equipment *before* and after you use it.  If the person on the elliptical next to you sounds sick, move to another machine!
7.)    Get a baseline:  If you belong to a gym, ask for a fitness assessment, which is often a free service.  You may be pleasantly surprised that you haven’t lost ground in every area; perhaps your flexibility is still great or your body fat is still in a healthy range.  The results will show you where you need to focus most.  If you prefer to test yourself at home, here's a step-by-step assessment you can do on your own.
8.)    Be flexible:  After treatment or surgery, you may not be able to return to your favorite pastimes.  While this can be initially discouraging, make an effort to “change the channel” (remember that article from last month?) and try and view this challenge as an opportunity to try something new.  I had always wanted to try Pilates, but didn’t have the time.  Each week I’m amazed at what an incredible workout it is—why did I wait so long?!  I used to love running, but cannot do it anymore, so I do Spinning, or intervals on the cardio machines for a more intense workout.
9.)    Take your time:  Don’t rush to do too much, too fast.  There will be days you feel so good that it will be tempting to push a little too hard, or workout a bit too long.  It would be a shame to have a setback after having been through so much.  Here’s another mantra for you, one that I still remind myself of on a daily basis:

“Slow down…and everything you’re chasing will come around to catch you.”

1 comment:

  1. Jenifer,

    You have been through so much. You are incredibly strong, brave, and committed. I'm sure this article about getting back into physical shape after your illness will help many people who are experiencing various types of illnesses of their own.
    Melissa Ridenour