Sunday, January 10, 2021

If I could save time in a Bottle

For Christmas this year my children gave my wife and I a year’s subscription to StoryWorth.    It’s a gift that fits the 2020 model of being trapped at home looking for things to do besides futile attempts to make sour dough bread.  I hoping it’s not clairvoyant on their part for 2021.    

The basis of the gift is the gifter (my children) sends a weekly question to the giftee (me) in an attempt to record insightful information about my past life.   The resulting collection of memories recorded by the giftee will be compiled into a book at the end of the year.    Pretty neat idea other than the weekly homework assignment.  Part of me thinks this is payback for all the years of chasing them to do their school work.

The exercise got me thinking about what it would be like to relive special days out of my childhood?   Would they be as joyous and carefree as I remember them or have I rewritten them in my memory to be that way.  Having reached the age of early senility my memory may be a questionable facsimile of reality.

 One place where I appear to have altered reality is around my memory of what running was like before LBL (Life Before Leukemia).    I have memories of rolling out of bed for a morning run, lacing up my shoes and blissfully hitting the streets without a moments thought to warming up.   Today’s reality involves crawling out of bed, cups of caffeine, a half hour of stretching, multiple layers of clothes, and at least a mile of creaky joints/muscles till I warm up.  After that the creaky noise level is reduced to the equivalent of a car needing replacement shocks.

I realized I can make good use of my time while out jogging to organize my thoughts to respond to Storyworth questions, a task that faces two challenges.  The first is the afore mentioned memory reliability and the second is trying to split my mental capacity between thinking and jogging.  You might think “no big deal, jogging doesn’t require much brain power, it’s pretty much automatic, like breathing”.    In a previous life, I would have agreed  but in the category of “the gifts that keep on giving”, chemo and steroids have presented me with balance and coordination challenges that make jogging require a bit more focus these days.   As a result, letting my mind wander can cause my jogging to wander (embarrassingly into traffic or people’s yards).    It’s also a constant vigil against potholes, curbs, and sidewalk cracks which are conspiring to cause rather dramatic face-plants.     At this point a reasonable person might ask “Why do you bother to continue to try to run?”  Fair question that deserves a thoughtful answer.    Truth is, I don’t have one.   Oh, I can come up with answers like it’s how I raise funds for Help in the Nick of Time/pediatric cancer programs or to keep my sanity during the infinitely boring pandemic or I’m better at it than making sour dough bread.  

 While these are all partially true, the real reason is, I hate what Leukemia treatment has taken away from me and I’m determined to take back as much as I can.  I can’t do anything about the loss of taste and smell, loss of balance or about the dry eyes but I can fight to get my strength back enough to run.    It’s clear now that I will never get back to where I was or even ever run a marathon again but I’m way ahead of where I was when I left the hospital and this year’s multi-day marathon challenge will hopefully be a step up (pun intended) from last year.  

More on that challenge, some of the programs we have funded this year through Help in the Nick of Time, and training during the pandemic in the coming blogs.  Stay tuned!

Sunday, April 19, 2020

Keeping Perspective

Perspective – INSPIRED LIVING with JENNIFER MOJICAI saw a YouTube video the other day, creatively put together by Julie Nolke, of her January 2020 self getting a visit from her April 2020 self.   Imagine for a minute that you could have that conversation with yourself but the future version was allowed to give advice but not allowed to say what is currently going on.   Pretty interesting and funny video.

Given what we know today, our perspective on daily life…. our finances, jobs and health have all been radically upended.   That was driven home to me in spades this week as I took on the 7-day Marathon Challenge.     A year ago, I set a goal of completing the effort in less than 8 hours.  At that time, after of year of working on getting back to running, I had only worked my way up to jogging a quarter to half mile before I had to stop and walk a while.   Hills were my nemesis, getting me breathing like an old steam engine and making so much noise people would stop to ask if I was all right.   One older woman walking her dog would cross the street when she saw me coming.  She said I scared her dog.   I think I actually scared her more.   I had pretty much resigned myself to this being the best I could achieve and running again was a dream too far.  If not for the fund raising for Help in the Nick of Time, I likely would have walked away from the effort.

Fast forward a year and life looks quite a bit different.    Delivery of groceries is no longer a luxury, wearing a mask and gloves is no longer just for bank robbers, eating out is now eating in, and toilet paper has become as hard to locate as big foot (TP is so valuable that I heard one person had tipped his food delivery person with it).     At an age when they grow leaps and bounds, I haven’t been able to spend time with my grandchildren in person in 3 months.   A year ago I couldn’t imagine such a scenario.    And of course, the most unbelievable event, the Boston Marathon was delayed for the first time in its 124-year history (actually it was replaced with a military marathon relay one year during WWI).   

Despite the marathon delay I decided to go ahead with my 7 Day Marathon Challenge in the week leading up to the original planned date.   Unlike last year I had set the bar a bit higher, planning to complete the challenge in under 6 hours (a goal that would have looked impossible a year ago).   I’m happy to say that as of this morning I was able to achieve that goal.   Unlike last year when I was jogging and walking, this year I was able to jog the entire distance in increments of 4.5-5.5 miles.    If my 2020 person had appeared to my April 2019 person and told him a year from now this was possible, the reaction would have been total disbelief.  Probably not much different than if someone told me then that the country/world would be shut-down this month. 
When I am in the middle of challenging times, I find it hard to keep a long-term perspective.   In our fast food, immediate satisfaction, instant google answers to everything, being patient and keeping perspective can be difficult.    My walking/jogging/running is a great reminder for me that there will be good days and bad days and keeping a broader perspective, a longer-term view so to speak, can keep me from stressing out about where I am today. 

Who knows where I’ll be when next year’s marathon challenge rolls around, and I’ve given up on trying to predict if I’ll ever achieve more than just jogging a few miles but those are worries for another day.   Right now, my 2021 self has an optimistic perspective on where life will be a year from now.

Thanks to all of you who supported me through this last year.

Sunday, April 12, 2020

My Game, My Rules!

My Game & My Rules - YouTubeThis is a popular saying I first heard from Dave McGillivray, the well-known elite endurance athlete who is also the race director for the Boston Marathon.  In fact, Dave has not only been the race director for 32 years but he has run it for 47 years IN A ROW. This includes last year’s marathon only 6 months after a triple bypass.   Dave used to be neighbor when I lived in Massachusetts and I would see him often on the roads or at races that his race management company directed.   Every year on his birthday Dave would run his age in miles.   Last I heard he was planning on taking on the challenge when he turned 65.   My Game, My Rules.

I’ve adopted this philosophy when I put together our 7 Day Marathon Challenge leading up to the 2020 Boston Marathon.     As I mentioned last blog, with the Covid situation the Boston Marathon has been moved to September and I planned to move my Marathon Challenge to match.   Well, as I am prone to do these days, I’ve changed my mind and plan to go ahead with the challenge this week.   My Game, My Rules.

It’s not that I’m a gluten for punishment, (although my wife may argue the issue), or that I’m bored out of my gourd being locked down (that’s definitely contributing to my already questionable sanity).    The reality is I’ve been thinking a lot about how the lock down is affecting the children stuck in the hospital fighting cancer.    Our limited lock down, isolating us from our friends and family is just a small sample of what these children are already facing as they fight cancer.     Given their compromised immune systems their restrictions are even more stringent.   I can speak from experience that when you are fighting the disease for an extended period of time in the hospital, the support of friends and family is crucial. 
So, I owe all the people who have supported Help in the Nick of Time a big Thank You for what you have done to help.   Your contributions have allowed us to supply laptops and tablets to pediatric cancer wards to keep the children connected to family, friends and the outside world.   In addition, we have been able to send boxes of toys and activities to help them pass the time and distract them from the drudgery and pain of treatment.  

It’s now my turn to do my part.  I promised to do a marathon over 7 days in under 6 hours and starting tomorrow we will be kicking it off.   While not as impressive as Dave McGillivray’s efforts last April, and a far cry from running the Boston Marathon, it is a major step forward from the 8 hour challenge I set this time last year.    If nothing else it will keep me busy and get me out of the house (which will contribute to my wife’s sanity). 

I will drop a quick update at the end of the week.  

Stay safe!

Sunday, March 15, 2020

Panic and Soldier On

Image result for soldier onBy now we have all heard enough about the coronavirus/COVID-19 to last us a lifetime.  I for one am limiting the amount of radio, internet and TV time to keep the hype and noise to a minimum.    Given the speed of changes and misinformation it is easy to be whipsawed between what to do and not do to stay safe.

Take face masks for instance.  When I was recovering from chemo and the transplant, I was told I had to wear them to protect myself when my immune system was compromised.   Now I hear the ones I was given to wear are useless to prevent infection from a virus but useful for protecting others from getting what you have.  Great, months of thinking I was protecting myself when really I was saving others from getting sick from me.    Guess it worked, no one around me got Leukemia.

But more seriously, what is the story with the irrational panic buying?  People are doing hand to hand combat in stores over hand sanitizer while right next to the empty spots on store shelves are plenty of soap, bottled bleach, and spray bottles of Lysol.   Tito’s Vodka had to issue a press release telling people not to make hand sanitizer out of their vodka (not enough alcohol content).  They suggested using it to pass the time while quarantined.   And don’t even get me started about the rush on toilet paper.   Toilet Paper?   What are people doing as a result of the virus that requires pallets of TP?  Maybe making home grown face masks.

You have to admit if it wasn’t so serious it would actually be humorous.  The best comedians are the politicians.  In Philly this week the local politicians declared the St. Patrick’s Day parade would go on as planned but in the same newscast they warned people not to attend.    Then of course there is president Trump’s expert medical assessment that it “will go away”, “One day, it’s like a miracle it will disappear.”.    This followed shortly after by bans on incoming flights, cancellations of large public gatherings and a stock market crash. 
Speaking of cancellations, for only the second time in 124 years, the Boston Marathon is being postponed till September (first time was in 1918 during WW I).    Disappointing I’m sure for all the runners that put in the training through the winter and now have to face staying in shape for 5 more months.   For me it is actually helpful.   I’ve been fighting a bad cold for the last 10 days and as the case with immune system, when I get sick a number of the inflictions from the chemo and transplant come back to haunt me.  As a result, I had to curtail my training for a bit.  The extra time and the summer months will make for much more pleasant training as I try to make the marathon challenge.   It will also hopefully take us past the significant part of the COVID-19 outbreak.   As someone who falls in the high-risk category (over 60 and compromised immune system) and currently fighting a bad cold, I can use all the breaks I can get.  In the near-term Pam and I are just hunkering down.

Hunkering down reminds me of the months I spent in the hospital going through treatment.  As we all go into some form isolation over the next few months it’s good to keep in mind that this is a small taste of what many pediatric cancer patients face for months and sometimes years.    Their world isolated to one room, maybe even to a bed waiting for the next treatment.   It’s the reason Help in the Nick of Time programs focus on helping with the pain, fear and boredom that often accompanies protracted cancer treatment.     For those that support us I can’t thank you enough.

Till next time, stay safe.

Sunday, February 23, 2020

I Need Patience… and I need it RIGHT NOW!

Atheism, Religion, God is Imaginary. Family trip to enlightenment. Are we there yet? Easy Meditation, Meditation For Beginners, Mindfulness Meditation, Christian Humor, Peace On Earth, Love And Light, Family Travel, Family Vacations, In This WorldNow that I’m a grandparent and retired I find that I’m not in as much of a hurry as I use to be…except to get to the bathroom.   I don’t get annoyed as much when the Doctor or Dentist is 15 minutes late, or Pennsylvania drivers sit at red lights 5 seconds after it turns green (a guaranteed horn in Boston), or I get stuck in line in the grocery store behind the person that has to count out their exact change.    I’d like to attribute it to my mindfulness meditation but I think it’s simply age and the fact that I’m typically not in a hurry to get anywhere (other than to visit the grandchildren).    

While I’m on the topic of grandchildren and patience, I had the pleasure of babysitting my 3 year old grandson the other day.  Some people would think that it would take a lot of patience, and they would be right.   He needed to be very patient with me as I constantly forgot the names of all his Paw Patrol figures, was totally confused about the Lego characters, and couldn’t quite mold the playdough into the characters he wanted.

Actually, I have a theory that your DNA changes with chemo and you grow a new set of patience genes.  In this fast paced, fast food, “I want it now” society this could be a good thing.  At least that’s what I thought until I realized when it came to the topic of how long it was taking to recover from the chemo/stem cell transplant, the patience gene was totally missing.   Take running for example.  It’s been over 2 years since I was released from the hospital after the transplant and it’s safe to say that progress getting back to jogging/running has been far short of my expectations.     A year ago, I almost gave up on ever running again.  It was a year since I got out of the hospital and despite walking almost every day, the best I could do was jog a quarter mile before I had to stop and walk for a while.   I did the math and at this rate I’d be almost 70 years old before I could run a mile and somewhere close to 90 before I could run 5.   Even with my new patience genes, sticking with the run/walk efforts for three more years, through the cold/wet winters and hot/humid summers to get to the goal of a mile seemed as likely as the politicians getting together to address global warming.    There was one thing that kept me going for another year, the support I received for Help in the Nick of Time when the best I could do was a 7-day jog/walk marathon in 8 hours.    With that motivation, and a ton of patience, I’m happy to report I am now able to jog more than a mile without walking.    It’s what will let me achieve this year’s 7-day jog/walk in 6 hours.  Sometimes being patient and sticking it out is worth the effort.   As long as I continue to get support for helping children with cancer, I’m committed to putting one foot in front of the other and blogging about the experience.

I’ve come to terms with idea there are no more marathons in my future but I would like to be able to run 5 miles before I’m 90 (maybe even before I’m 70).    Even better is to still be able to run 5 miles when I’m 90.

Till next time…slogging and blogging away.

Sunday, January 19, 2020


Image result for ripples in waterBack in college, what seems like hundreds of years ago, my girlfriend at the time introduced me to one of her good friends.   Bad move.   Almost 50 years later the friend she introduced me to and I have been married for 44 years, had four beautiful children and now have 7 (and counting) gorgeous grandchildren.    Anyone who knows me well knows that the decision to date and marry Pam was the best decision I made in my life (and I’m not just saying that because I know she will be reading this).   Heaven knows where I would be without her.  It’s interesting how a single decision can have such wide-ranging ripple effects not only in our lives but in the lives (and even the existence) of others. 

This month it is 2 years since I escaped from the hospital after my stem cell transplant.   I’m here to write this because a gentleman in Germany decided to volunteered to be a bone marrow transplant donor and when he was called to donate for me, he accepted.  The commitment is not trivial both in time and pain.   That decision not only saved my life but has had a ripple effect on the lives of people around me.   It’s a gift I can never repay.

It’s one of the reasons I feel so passionately about how Help in the Nick of time helps pediatric cancer patients and their families.    In the last year we have driven programs that have helped many dozens of children and families deal with the difficulties of a life with cancer including computers and tablets while in the hospital, gift boxes, camp outing, and day/night out events.    I like to believe the ripple effect goes far beyond our efforts.  It’s only through the support of many of you that we have raised almost $100,000 to be able to fund these programs.   This year I would like to break through that $100K mark and with your help I know we can do it.

For my part, while I’m a long way from running a marathon this year, I will again be striving to complete a multiday marathon challenge.    You may remember last year I committed to completing 26.2 miles over the 7 days leading up to the Boston Marathon and to do it in under 8 hours.    It was far from my less than 4-hour marathons but no less difficult.   Recovery this year has had its challenges but I’m now able to mix a bit of jogging with my walking.  It’s not pretty, and certainly a long way from what anyone would call running, but I’m setting the goal to do the 26.2 miles over 7 days in less than 6 hours.    Maybe I’ll send video this year, although I’d recommend not viewing it in public as the heavy breathing may give people the wrong idea on what you are watching. 

On the leukemia front, results from the latest bone marrow biopsy came back clean (YAY).   Just wish they could test without corkscrewing a piece of bone out of my hip.   But, chances of a relapse go down each year we are in remission so I’m one happy little camper.
So here we go again…another year of marathoning and fund raising.   I believe both our efforts are sending out good ripples far beyond what we know.  I’ll keep you updated on the progress on both over the next couple of months.   If nothing else, the training updates should be entertaining. 

Saturday, November 9, 2019

The age of Lost and Found

Image result for pirate with one arm and one legI 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.