Help in the Nick of Time is a charity set up in the memory of our son Nick who loved sports and helping people. The goal of the organization is to work through local charity organizations to direct assistance to single parent families facing short term needs to help them get back on their feet.
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”.
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.
Have you ever stopped to look at your net worth? Not just your financial net worth but your life net worth; your family, friends, life style, community, health, etc. All the things you have going for you. Most of us tend to measure our lives in terms of our ability to get more of what we want as opposed to recognizing (enjoying?) what we already have. I certainly spent years guilty of that.
Sometimes it takes a losing what we have to recognize the privilege of even having it in the first place. Nothing I can think of causes you to value your life net worth faster than the idea that it all can all be taken away. In my case the wake-up call was cancer but it could be the loss of lifetime spouse or friend; financial, business or reputation ruin; or other debilitating health issues (Alzheimer’s scares the crap out of me). In the recent months I’ve lost 3 friends to cancer. One lifetime spouse summed up the impact best in 4 word “my world is undone”.
OK, so what’s my point? Take inventory of all you have? Acknowledge it and be thankful for it? Like I’m the first person to ever write that. And by the way….who am I to be lecturing anyone? Not a day goes by that I don’t have “I want” complaints about getting my health back or getting back to running. I think my point is, for me, it doesn’t have to be all one way or the other, just a balance of having goals and at the same time acknowledging what I have.
Speaking of my health, I have been avoiding doing an update until I had more specific news. Mostly over the last 6 months I been dealing with the fallout of the chemo, the stem cell transplant, the drugs to deal with the side effects. I won’t go into a litany of all the little things but the effects of steroids have really pissed me off. Besides looking like the Pillsbury dough boy (bald and puffy), and muscle weakness, the skin on my arms and legs is so thin that any bump or scratch causes a purple hematoma or an outright bleeding wound. I look like I lost a wrestling match with a weed wacker. I got off the steroids for a short period but my adrenal gland didn’t kick back in and my cortisol levels dropped to effectively non-existent so back on the steroids.
That said, I’m doing good. Latest biopsy results this month (just less than a year from my transplant date) showed 100% donor cells (great news) and no apparent sign of Leukemia. Odds of a relapse have now dropped from 50% to 20%. I’ll take those odds.
Which is a good lead in to remind me to keep looking at what I have, not what I’ve lost. My story could easily be the same as the friends I’ve lost. When I take inventory on what I have… my loving wife, awesome family, close friends, my recovery, a great spiritual community…I am truly a blessed man.
It also reminds me to look at what others don’t have or have lost. Compared to others, today for us may be (as the song goes) “another day for you and me in paradise”. Through the childrens’ hospital visits for Help in the Nick of Time I have seen firsthand how difficult (heart rending) things can get. Bad as things may seem at times, there are lots of people who would swap places with us.
I’m learning to balance the “I want” with the “I have” one day at a time.