I believe in hope

Two weeks ago, my surgeon in LA told me "I've never seen the intrinsic muscles in the foot come back after being atrophied for so long.  You may need to prepare yourself that this is your new normal."  What?  I can't stand, I am severely limited in the shoes I can wear, I hurt all the time (I mean all the time, ALL day, every day). How can this be as good as it will get.  I cried, I called my dear friends and family for support. I grieved this loss.  I tried to process it.

After a few hours/ days, I came to the conclusion that if this is as good as it will get for me, that's OK.  I have my foot, I can swim, I can ride, I'm starting to run, I can live my life. Yes, the pain sucks.  I hate the pain, but I'm still glad my foot is my own.  Sensation or no.  Someone wanted to cut my leg off, but my tenacity said no there must be another way.  So, I had to found that other way, and I'll find a way to make this work too.

Still I held onto hope. No one was saying it was impossible, just that they hadn't seen it.  Maybe my doctors in NewYork would have a different theory, different info.  I prayed silently in the night for that to be so.  My dear friends propped me up supported me, said those prayers with me.  I knew I'd make it OK, I just wanted to be told, I wasnt' in this pain for no reason.

Fast forward a few weeks and I'm in New York in my ortho oncs office, she says yes its possible I'll get the muscles back, never as robust, never as strong, but back yes.  She says the pain should improve over the next 6 months to 1 year, the muscles may take up to 2 years, but she believes.  I believe too, I choose to believe in hope.  I choose optimisim.

Malibu Triathlon Again

Last year I signed up to complete the Malbu triathlon as a way of giving back to the cancer community, a way to raise money for our most innocent cancer patients, children.  I felt I was at the pinnacle of health, at least for me.  Sure my foot went numb sometimes, and I had other odd symptoms, but I was 4 years out from my cancer diagnosis and certain that it was behind me...

However, a month before last years race, I received the cruel news that no, it wasn't behind me.  My tumor had likely returned.  I told very few people, I was too scared to admit that my nightmare might be recurring.  I trained hard. The race day dawned and I loved every second of it even though the hideous numbness kept telling me there probably was something wrong.

The rest of the story is now well known to those of you who follow my blatherings here or on twitter or facebook, I lived in denial for awhile, then finally got it biopsied only to learn that, yes, my cancer had returned. Yes, I was once again facing possble amputation.  Yes, this was a nightmare! I cried, I screamed, but ultimately did what I do best, face it.

Surgery was more extensive than anyone hoped and I woke up begging to be told why it had lasted 6-8 hours longer than it should have.  Slowly the reality of what was done to remove the cancer from my foot and give me the best chance at a functional recovery dawned on me.  I vowed to fight.  Two weeks in the hospital, weeks never out of a chair (wheeled or otherwise), and the deadline for the Malibu tri approached.  I had planned to do the olympic distance this year, but now I was in a wheelchair unsure of whether I'd walk again from my own cancer journey.

Still somewhere in my self absorbed brain I knew it was better to face this as a functional adult than a child and that I'd find a way to swim, bike and run again.  I didn't know how, I just knew I would.  The deadline to sign up was days away.  Initially, I said "no way, I can't. I don't know even when or how I'll walk again."  I was fairly certain I could swim by then, bike maybe, but to run? that sounded preposterous.  I asked a few friends what they thought.  "Could I walk the run?" consensus, my ego wouldn't allow it.

Should I sign up to do the race?- My friend Jason replied

"After much thought I would say not this year.

I admire your desire to move forward and not let anything hold you back. I think more than anyone else I know, you COULD do this. Your enthusiasm and sacrifice far exceed most.

I always proceed on the side of caution with these things though. You should take the rest of this year and let your body heal, rejuvenate and get back to where you want to be. There are plenty of tri's to do and I'm sure you're going to kick ass in all of them but for this year just regroup. 

This is not to say you CAN'T do this .. you totally could. 

I would rather see you fully recover over the next 6 - 10 months and then start training hard for the next season."

His thoughts stuck with me, should I focus on recovery? Or give myself a goal? I knew that he was right, if I set the goal I'd make it, but would that hurt my ultimate goal of health?

My solution, sign up for the race as a team.  I asked him if he'd run for me. The next day he told me how inspired he was by my determination.  I don't know about that, I was just a girl in a wheelchair with an irrepressable spirit.  I asked my friend who'd turned me into the cyclist I was prior to surgery if he'd ride, and thus Team Lisa was born, a mixed relay triathlon team.  It hurt to not do the whole thing, but over time I knew it was right.  Then a month or so ago, I realized I wanted to swim and ride the race and Jason would run.  It felt right.  My training has been fun and inspired this year.  Everything I do, and have done, for the past 8 months hurts, but training for this race has felt easier, smarter than last year.  I've been safe, stayed in my limits and enjoyed it.

So, in 5 weeks time, I will complete 2/3 of the Malibu Triathlon with my friend Jason running to support me in every way as he has done over the last 4 years of our friendship.  We do this because cancer won't get me down, but more importantly it shouldn't get any children down.  We'll race for me, for health and fitness, but also to raise money for my hospital, Children's Hospital Los Angles's pediatric cancer center.  

I am beyond proud to do this and beyond proud to have a friend who will help.

Will you also help us?

To donate in my name click here

To donate in Jason's name click here

Next stop Alaska

Sitting in an airport lounge awaiting my flight to Vancouver, I think back to that night 4 months ago when my dear friend asked me if I wanted to go to Alaska with her for her birthday.  I was at my parents house at the time, high on narcotics, in a wheelchair, all around miserable.  June seemed a million years and a lifetime away.  A vacation in Alaska with dear friends a reason to get out bed the next morning.  Yes, I said immediately.  I'd love to.  I've always wanted to go to Alaska, the only place I've ever wanted to go on a cruise.  It sounded perfect

Now months later, I can't believe that it is reality.  In a few hours I'll be in Canada, tomorrow we board that ship to cruise up to Anchorage.  I have no idea how it is that it is June already, but I can't wait.  I may post pictures of glaciers calving into the ocean, of the wildlife we see, or I may not.  Just know that I am so happy to be Alaska bound with dear friends.

An S&M relationship for good!

I’m in a Sadistic/ Masochistic relationship, and I like it.  Now don’t get any crazy ideas, but really I let this guy strap electrodes to my leg, put me in a 40 pound flack jacket and then do exercises, and that is just the beginning.  Yep, I’m talking about my physical therapist.  Still I go back twice a week because he knows what he’s doing and I’m getting better.

Physical therapy is a funny thing. Recovering from a surgery, especially one as extensive as mine, PT is essential.  However, physical therapy can do so much more.   I have friends in PT now for dog bites, bad backs, sore knees etc.  Sometimes we take how we move and how we exercise for granted. We focus on the big muscle groups or how far or hard we ride/ run/swim as we train.  Rarely, does anyone take a break and think about the muscles in your foot, hand, spine etc that makes all that possible.  Yet, in part that is the job of a PT.  Here’s a few snippets of my journey…

I have a deinnervated foot, half an ankle, a quad that had a section of it removed, and then significant muscular atrophy from months of sitting around doing nothing.  The first thing that my PT started working on was regaining my flexibility.  Then we progressed to work on my foot and ankle. You can’t stand if you have no strength in your ankle.  Think about it. First exercise assigned:  Pick up marbles with your toes!  Yep, I spent 15 minutes trying to make my little toes that can’t feel and can barely control to pick up marbles and drop them in a pitcher.  Good fun, 3 months later, I rock this exercise!

Then we progressed on to other fun ankle strengthening things like, put your foot on a BAPS (solid surface on a ball) and rotate it around.  It sounds silly, but week by week my ankle got less wobbly as I slowly learned to walk again.  There were all kinds of crazy core exercises to strengthen my back and get my abs back.  My BoSu ball and I became best friends. 

Soon, I started to be able to upright and the sadist focused on strengthening my ankle and balancing.  Thus, I became friends with a lovely pair of shoes I coined “Birkenstocks on balls.” First I just tried to walk on them, then I had to do various odd walks on them with resistance bands ties around my leg.  Thus, the S&M relationship began, because really that is crazy. 

Then the crazy lunges and core exercises really began.  Slowly, my body started to look like what it used to, but still my quad didn’t seem to activate normally through the surgical scar. So, the sadist attached electrodes to my leg and sent electrical stimuli through my quad at as strong of a frequency as I could handle all the while doing leg lifts.  I felt like a prisoner at Guantanamo Bay, yet I didn’t reveal any secrets.

Week after week the exercises intensified as did what I was allowed to do outside of the PT gym.  Yes, you can swim. Yes, you can spin. Yes, you can ride a bike. Yes, you can get on the elliptical. Aqua-jogging? yes.  The yeses began to grow, my strength, confidence and optimism slowly started to return.

Still the sadist always pushed me with a smile on his face, if I started to get good at an exercise he made it harder, up the resistance, up the weight, do it standing on a foam pad.  He pushed, I laughed and set out to meet the new harder version.  Thus the masochist in me is fueled.

He started having me do lunges wearing a 40 pound weight vest.  Then other exercises in the flack jacket.  He wanted to load my Achilles so that I could prepare to run.  I now spend an hour at PT wearing this 40 pound vest.  Craziness I swear, yet I do it.  Sometimes, we jest about the combo exercises.  One day as a lark he said- stand on one leg on a foam pad, wearing a laser target, vibrate a body blade and throw a ball against the trampoline.  My prize for this stupidity, no BAPS board that day which is the true Guantanamo Bay exercise. 

I go, I go twice a week.  I spend 3 +/- hours there and I do whatever he says.  My reward, today he had me run on a treadmill.  5 months after my surgery and I’m starting to run again.  I’m well on the road back.  It feels great.  I’m good with this S&M thing we have going on!
I'm also incredibly thankful to my  PT Jonathan for travelling this long journey with me!

Are Physicians really Bad Patients??

Are doctors really worse patients than non-MD trained people?  I have given this question a lot of thought and have yet to reach a conclusion.  However, I’m going to start sharing some of my thoughts… 

I thought about this the other day as I headed to my dental cleaning, a dental cleaning I was 4 months late for mind you.  Also, this was my 3^rd medical appointment of the day, plus an hour with my personal trainer.  Yep, it was a day of Lisa.  Funny thing is most days these days are “days of Lisa.”  MY medical appointments fill the functional hours of most days, and I hate it, and maybe that is my point.

Why do doctors have a rep as being bad patients?  Often, that rep stems from being non-compliant with their treating physician’s orders, their medications or their follow-up.  OK, maybe just being non-compliant in general.  I have tried really hard to be a good patient, but it is hard (oh so hard), and this is my full time job right now. 

So, as I drive from appointment to appointment, I question why is it hard for doctors to be compliant? At first I thought maybe it was the years and years of training where your schedule is not your own.  I personally spent 6 years in post medical school training, and I can’t even tell you how many appointments were missed because of unexpected emergencies, how many teeth cleanings were cancelled.  I won’t mention how long I went without certain standard screenings.  We were taught in medical school, and in our training, to put our duty, our patients, above our own health.  Even as our mentors would espouse that in order to be good physicians we have to take care of ourselves they would make it difficult for us to be released from duty to take care of our own needs.

Henceforth, for years we are taught to put off our needs. Whether they be simple needs like eating, using the facilities, or making our own appointments there was always a patient that had to be seen.  It is a part of the profession, but does it subliminally train physicians to put off their own care in order to focus on their patients?

As I examine my own life, I have realized that I have often rushed my recovery from injuries.  Four days after breakng my foot still non-weight-bearing on crutches, I was on service in the hospital responsible for 30-40 patients and new interns  trying to crutch around ahospital larger than 2-3 average city blocks. My attendings would laugh at me seated at the central nursing station with my foot up so I could be available, most days my colleagues would take the code beeper since I couldn’t get anywhere very fast. Yet, I was there bright and early every morning even though I had to pack to move across the country to start my fellowship through it all.  I never considered calling in sick, how would that have worked that then? Nothing bad happened, but I shudder to think of the possibilities if I couldn't have responded to an emergency on time.

After my first go-around with cancer surgery I returned to work a few weeks after being cleared to walk again post radiation. I was far from being ACTUALLY able to handle the rigors of my job and returned to work in a non-clinical status, but returned all the same.  I fell asleep on the floor playing with Sadie that first day back.  The first time I took call my foot was still so stiff upon waking that when I was called to a code in the middle of the night, I had to hop down the hall to respond.  I could hop pretty fast, but…

So, this time, I vowed to myself that I would take the time needed to heal myself before returning to work.  I have refused to feel guilty about that.  Every morning when it takes me 5 minutes of stretching to get out of bed, I know that I am far from being willing to be responsible for a baby’s life when I can’t respond quickly enough.  I am making great progress, but I am far from being ready to do my job, to accept responsibility for a child’s life.  I’m giving myself this time, and I can only hope that when I return to my profession I’ll be ready for it, because I do love my little charges!

I am learning to accept my limitations and take care of myself.  I know that when I return to caring for babies this will make me a better physician.

Believe in Hope

My worst fear heading into my surgery was that they would have to sacrifice the posterior tibial nerve. That nerve provides sensation to the bottom of the foot and to the muscles in the foot. Without that nerve, you can't feel the bottom of my foot or really grip your toes. That fear was realized when they discovered that my tumor had infiltrated the nerve. My surgeons almost stopped the surgery to talk to me when they discovered this, but after meeting with my parents and best friend they proceeded to do what needed to be done.

When I was in medical school, we were taught that once a nerve was removed it didn't grow back or grew back so slowly and in a disorganized fashion, and thus once such a large chunk of nerve was removed it was gone forever. However, in the intervening decade plus medicine has advanced such that we know it is possible for a nerve to regenerate, but it needs a roadmap. Thus my surgeons did a nerve graft to provide the posterior tibial nerve a route to travel. I was told to watch for a slowly progressing Tinel's Sign. Tinel's Sign is a shooting pain along a nerve that is irritated, which a growing nerve would be.

I have been afraid to believe that this is working and this current state of a numb, non-functional foot developing hammer toes, wouldn't be my life forever. I have tried to convince myself that I can learn to get used to this, that it is OK that my toes will never grip a shoe again. I mean who needs to wear slides, who needs flip flops. Sadly, I haven't been doing too well at convincing myself. I still pray every day that there is another option. But I have been afraid to hope, afraid to believe it, almost afraid to even pray.

Today, as I walked up my stairs, I was getting shooting pains into my foot, so I stopped and carefully tapped up the route of the nerve, consistently I could reproduce the sign. I looked at my roommate and asked for a tape measure. We measured how far from the edge of the scar the growth was, converted it to millimeters and came up with 112. I could consistently reproduce the Tinel's sign 112 mm from the edge of my scar, a nerve grows at the rate of 1 mm per day. So, I pulled up the callendar and counted the days since surgery, 112 days. I had the surgery 112 days ago. The reality slowly sunk in. I couldn't believe it. I could believe in hope again. The emotion overtook me, I started to sob.

I've been so afraid to believe, to hope, that the nerve would regenerate; that I'd convinced myself it wasn't. However, there were the numbers staring me in the face. It's right on target!  I can believe in hope again!!!  I like hope!

Roses

Last night, I walked up the stairs to my house and looked at my rosebushes.  They needed desparately to be deadheaded, but still there were some beautiful roses.  I decided to pick a few to bring their fresh smell into my house and to bring me some of the joy that I always feel in my garden.

Of course, I couldn't help but to do a little trimming of the dead blooms, but still I managed to pick myself a  small bouquet of roses to bring in.  These included the best smelling roses ever.  A simple action, but it makes me smile.

I was once told to find something that makes you smile and make it a part of your daily life.  Or to stop and smell the roses.  My roses make me smile, so I brought a few into my house!

Hope you all have soemthing to smile about every day!