The age of Lost and Found

I just celebrated my 2-year transplant birthday this week and I thought it was a good time to reflect on where I am in my recovery and what I’ve learned about myself.   Self-reflection can be a frightening thing but not nearly as scary as my reflection in a mirror these days.

I was taking a post-transplant inventory on my health the other day and I realized how much I have physically aged just since the transplant.   I had expected aging to be a gradual process but with the chemo, transplant and associated after effects, I got to see it in an accelerated form.  Quick back of the napkin estimate is I’ve aged 5 years since the transplant….physically.  I think the jury is out on the mental affects but then I’m so forgetful how would I know.

It’s not like I expected to never get old.   I was prepared for a gradual decline in my marathon times, the inevitable thinning of the hair, the constant search for the car keys/wallet, the lack of strength to open jars, the need for a heating pad and Aleve after a half hour of raking leaves, etc.     It’s just I didn’t expect it to happen all at once. 

It’s time to face facts… “this is your new reality…get use to it.”

Last Sunday I stumbled on a cartoon in the Sunday paper that hit home.    I’m usually not a comics reader but this one happened to be just above the Sudoku puzzle which I’m fairly passionate about.   It was Hagar the Horrible talking to a crippled pirate.

 “…look at you…one eye! 

“One hand!”

“And one leg!”

“Could your luck be any worst?”

The pirate responds “Sorry, do mind talking into my good ear?”

A great reminder that nothing is so bad that it couldn’t be worse.   Also a great reminder that your attitude determines if the glass is half empty or half full.   For example:

• -         Lost my sense of taste but now I can eat almost anything and not worry about it tasting bad.    With a little imagination, any flavor of ice cream can taste like my favorite.
• -         My memory is not what it used to be but I worry less because I can’t remember what I was worrying about.  I write myself more notes and lists to get things done.  I just have to remember where I put them.
• -         Eyesight is going so I have to wear glasses.   Glasses make me look smarter when I'm wearing them but dumber when I ask where are my glasses (and they are on top of my head).                  
• -         No hair so I save money on haircuts and shampoo.  Showers are faster too.
• -         Less of a sense of smell makes changing grandchildren’s diapers easier and airplane trips more pleasant.

Maybe we need to have a weekend camp for middle aged adults to introduce them to what to expect.   Make them wear slightly out of focus glasses, give them mouthwash that numbs the taste buds, shave their heads (men), hide any items like wallets, purses, phones and keys they leave around.   If we really want to challenge them mentally, make them select the lowest cost Medicare insurance plan for a simulated 65-year-old.

Despite what it may appear, I’m not complaining.    I expected pretty much all the above at some point as I got older, just not so soon and not so suddenly.   With the exception of running I’m learning to adapt.   I haven’t given up on getting back to running even though I’ve accepted my marathon days may be over.    I plan on doing another fundraising multiday marathon challenge again this year.   Thanks to all the support last year we were able to fund four programs for children with cancer and their families in 2019.    They send their heartfelt thank you for the help.

So, 2 years on from the transplant and despite the challenges of GVHD I’m thankful to still be here.  Shortly I’ll get the results of my latest bone marrow biopsy and if we get a clean bill of health it will lower the odds of a relapse.   Fingers crossed.

Marathon Week

Monday is the Boston Marathon Day and for the first time in 14 years It will be the second year in a row I won’t be at the starting line.    All those years when I was in the midst of winter training doing long runs in single digit temps, I never thought I would miss it, but I do.   It’s not just the race I miss, it’s all the activities around the race weekend, the awesome crowds on race day, and the thrill of being one of the runners who earned the right to stand on the starting line with the most elite marathoners in the world.

Running the marathon was also my way of showing my commitment to Help in the Nick of Time.  If I am asking people to part with their hard-earned cash, even if it is for a good cause, I wanted to demonstrate my own commitment as well.  Besides, it selfishly gave me a good excuse to blog (vent) about the ups and downs of training and running the marathon. 

So, you can imagine the hole cancer has left, not only taking away the marathon and fund-raising challenge, but the ability to run at all.     When I finished the first round of chemo and went into remission back in 2016, I was back running within a couple of months and did the 2017 Boston Marathon just 7 months later.   I figured it would be about the same after the stem cell transplant but here we are over a year since I got out of the hospital and my efforts to jog at all resemble a toddler falling all over himself learning to walk.   It’s cute in my grandchildren, not so much in an old man.    I swear I can hear the kids at the bus stop as I pass by saying” get a walker before you hurt yourself” under their breadth.

It is with this in mind that I decided to put together the 7-day Marathon Challenge (26.2 miles in less than 8 hours over 7 days).   I figured it may not be as impressive as running a marathon in 4 hours but it would take a similar amount of commitment given where I’m at physically.    

Well, 5 days in and I didn’t underestimate the effort.   It’s forced me to push myself from just walking to mixing in occasional 30 second jogs.   While it feels great to have the legs moving again, 30 seconds of jogging leaves me feeling like someone poured cement in my shoes, and breathing like a lifetime smoker, with a single lung, in the midst of allergy season.  Despite the challenges I’ve been able to complete almost 20 miles in the first 5 days and with a push I may make the full 26.2 in under 8 hours.

Why do this?  It’s nothing compared to what the children with cancer have to go through.    If my efforts motivate contributions to Help in the Nick of Time it is all worth it. 

  

Two days to go.  I’ll send and update once the 7 days are up and let you know how I make out.

Keeping Things in Perspective

The other night I was watching the TV show New Amsterdam.  It’s a somewhat different hospital show where the Hospital director is fighting throat cancer while trying to run one of the biggest hospitals in the US.  There are a number of scenes where he hangs out with regulars in the cancer ward while they all get their chemo treatments.   This particular show they were renaming musicals as if they were cancer based.   I was too busy laughing to remember them all but two that I do were Croaklahoma and Mucus Man.    

It reminded me of my twice a week visits to the outpatient cancer center where I would go to get my chemo and blood.   Picture a large room with 20-30 lounge chairs filled with people of all ages/sex/race.   Without patients the place looks like a Lazy-Boy show room.    The nurses had their standard set of questions they would ask when you were settling in.  To tee up the relationship for the next 8 hours I would try to find creative ways to answer them.

Nurse:  “Have you fallen in the last 12 months?” 

Response:  “Only in Love”.  

Nurse:  “Do you have any fear of physical or sexual abuse at home?”

Response:  “Not in the last week”

Nurse:  “Can I get you something to drink”

Response:  “A different bag of blood, this one doesn’t taste good”

Response:  “Bourbon on the rocks”

I once had a pretty young nurse who was all business.  When she asked if she could get me anything.  I figured I’d lighten things up and asked for a kiss.  She looked me straight in the eye and said “I’ll get you another bag of chemo.”.

They say keeping a sense of humor in the tough times is good medicine.    Certainly making jokes about cancer and death would seem inappropriate, but for the patients in the middle of treatment it is way to deal with the stress.    When I was in treatment, I use to make jokes about “kicking the bucket”.   I thought they were hilarious, Pam was not impressed.   

In a lot of instances, I find that humor can take the stress out of an otherwise intense situation.    It was definitely true in business and somewhat true in fighting cancer.  Typically there’s nothing funny about cancer but when you are in the middle of treatment (and even afterwards) the absurdity of the situations you face can be rather humorous.    There was nothing humorous about having a catheter until I realized you can drink all you want and never have to miss a minute of a football game rushing to the bathroom.    You can find an upside to almost everything if you look hard enough.  

I think this carries over to every day normal life as well.     It’s easy to get caught up in the little challenges we face and turn them into big issues that look overwhelming.   Trying to get back to running certainly falls into that category.   Discovering a way to put things in perspective helps me to take some of stress out of the situation.   One trip to a pediatric cancer ward has a way of putting all my challenges in perspective.  That, and a bit of self-deprecating humor goes a long way towards my mental stability (or at least my perceived stability).

I love the Humphrey Bogart quote from the movie “The African Queen”.  “Things are never so bad that they can’t be made worse”.  

A different kind of Marathon

Normally this time of year I would be well into my training for the Boston Marathon and you would be getting regular whining updates on all the trials and tribulations of weather and injuries.   As most of you may have surmised from my last blog, I will not be doing Boston this year, or for that matter, any other marathon in the foreseeable future.    Despite that, I thought it would be good to provide updates of a different kind as I make the journey through recovery.    Not sure where this journey will take me but who knows, I may someday reach the point where another marathon would be an option.

If my recovery has taught me anything it’s to look at my health from a totally new perspective.   Before I got sick I seldom worried about being healthy.  I was over 60 with a good cholesterol level, didn’t smoke, a heart rate in the 40’s, and regularly training for and running marathons.   I was seldom sick and even skipped getting an annual flu shot (a real risk taker).

It’s now a year since I got out of the hospital and I feel like the journey to recovery is a never-ending story.    In running terms, it is not a sprint, it’s an ultra-marathon…without a defined finish line.  Great thing about races is you always know how far you have to go.   In the case of this recovery there is neither a defined goal (how much you will get back) or time frame (how long it will take).   People say it the not the destination it’s the journey….right now I’d like to skip the journey and get right back to being healthy. 

So instead of one big goal I’m setting up a series of smaller goals that are more attainable in the near term.  These little milestones will make up my journey back.   If you are willing, I’d like you to come along with me as I blog my way through the journey.

The first three mini-milestones are:

-         Building up the immune system so I can get vaccinated

-         Jogging a mile without stopping (or coughing up a lung at the end)

-         Building my arm strength enough to lift a gallon of milk with one hand without straining  

In the category of “things they don’t tell you when you have a transplant”, you lose all your antibodies to traditional diseases.  As a result, you have to be revaccinated like a new born.  In the interim you are susceptible to any childhood diseases (measles, mumps, whooping cough, etc.) the grandchildren might bring home.     Unfortunately to be revaccinated your immune system has to reach a certain level or it can’t generate the protective antibodies.   My system has not reached that level yet.   First time I wanted a flu shot and I can’t get it.

Jogging a mile is pretty self-explanatory.  Seems pretty straight forward, put one foot in front of the other.  Unfortunately, I’ve lost the muscle strength, coordination and stamina that I used to take for granted.   My attempts are like watching a 1 year old try to run.   Cute in a baby, very embarrassing for an adult.

Speaking of embarrassing, having your arm shake like a paint can shaker when trying to pour milk from a gallon container into a glass is right up there (not to mention messy).    I thought it was just my arms but in physical therapy I’ve learned it’s my shoulders and back as well.

Some of my future goals include getting off steroids, getting rid of mouth sores, getting off stomach meds, getting my sense of taste back, maybe getting hair again, and jogging a 5K.

On bad days I worry that where I am is the best it will get.  On the really bad days I remind myself I’m lucky to still be on the green side of the grass.     I also make a point to remember the courage I have seen in the pediatric cancer wards…. a true inspiration.

Stay tuned and I’ll keep you updated on the progress I’m making as well as our accomplishments helping children with cancer through Help in the Nick of Time.

Cheers

Dave