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.
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.
I love spending time with my grandchildren, I think most of us who are blessed with them feel that way. There’s something special about the relationship between a grandparent and grandchild that goes way beyond just the familiar connection.
When speaking with perspective grandparents I may have been overheard saying “grandchildren are the reason to have lot of children”. Don’t get me wrong, I love my children and I love being a parent. Being a grandparent is not better than being a parent, just different.
I got a chance to visit with some of my grandchildren last week. First time face to face in 6 months. It was joyous. Nothing can make an old man forget his age faster than playing with his grandchildren. Age doesn’t matter, I can morph to be just as interesting to a 2-year-old as I am to a 7-year-old. I’m sure I look pretty immature (almost senile) crawling around on the floor or imitating the voices of Star Wars characters (I do a mean Wookie). At the end of the day I was tired but at least 10 years younger. Puts a smile on my face and joy in my heart that just won’t go away.
I’m reading a book right now on how the brain works and how you can positively affect your well being through attitude and getting in touch with the better part of your behavior. It got me thinking about the relationship with my grandchildren and why it brings so much joy and happiness into my life (I like to think the kids get a lot out of it too). Some people would say it’s because you get all the fun and none of the responsibility (spoil them and then send them home). I’ll buy half of that (being fun) but I don’t buy the lack of responsibility for what you teach them. I believe grandparents at times can have a reinforcing and sometimes stronger teaching impact than parents. Some might say it allows you a “do over” for the mistakes you might have made with your own children. There may be some truth to that but these are different children in different times and parenting changes with the generations. Besides, they have a set of parents who have their own approach and the last thing I would want to do is undermine what that is.
For me, I think it is something else. I think it brings out the child in me. It takes me back to memories of younger days when I had no responsibilities except to live in the moment and enjoy the days with my friends and family. The brain book says that all memories are tagged with feelings. My memories of childhood are tied to feelings of freedom, safety, happiness and love. I get many of those same feelings when I’m spending time with the grandchildren. They bring out the child within and reconnect me with my past.
I wasn’t fortunate enough to have lots of grandparents, I only had one by the time was 1 year old so I don’t think this is necessarily something you learn. I think this is more about letting yourself go, not being afraid to look a bit silly at times, remembering what made you happy when you were young and looking for opportunities to create those same happy, safe and loved memories for the grandchildren that will last a lifetime for them. There’s a child in all of us, we just have to let them out now and then. For me, the grandchildren are the key.
The other day when I was looking at pictures/videos of my grandchildren it reminded me of the best childhood times, the carefree summers filled with long days of freedom and endless activities. Family oriented Cranston RI offered the perfect environment for adventurous kids with everything from ponds for fishing and swimming, to city pools open all day that were practically free, numerous sports fields and organized sports programs, and undeveloped areas of woods ideal for building forts, secret missions and wild adventures. It also had neighborhoods full of kids making it easy to find friends to start a pickup football or baseball game or to go exploring. I remember waking each morning excited about what the day would bring and going to sleep at night exhausted from a full day of non-stop activities. Life was great.
I recently had a conversation with a friend on how much she was looking forward to a vacation to escape the burdens of her everyday life. This was followed by her venting on how hectic and overwhelming life had become shuttling the kids around to events, keeping up with her part time job, shopping, cooking, paying bills, managing finances, house cleaning and maintenance, doctor and dentist appointments, and car care. This is a woman who I know loves her kids and husband and looks for chances to spend time with them. Who loves her job and the life style and trappings it affords. So why is she so unhappy when she talks about the life she wanted and then built for herself?
The majority of us are guilty of living life rather than loving life. Going through the motion of everyday activities without really thinking about how they contribute to the joy in our lives (or don’t). Because of the demands on our time we start to think about every activity as a chore sucking the joy out of events like taking your child to a sports practice or successfully cooking a new recipe.
I was recently reading a book on how the brain processes information and emotions and one of the insights involved the coupling of emotions with activities. Things that are remembered best are tied to one of these four emotions; fear, joy, aggression, sadness. The more we can change our attitude to couple joy with activities, the stronger our memories of those events will be. Equally important, the chemical reaction of consistently coupling joy/enthusiasm with events can rewire the brain to create a happier attitude toward life (the reverse is also true).
My life these days couldn’t be more different from two years ago. I’m pretty much house bound as we try to avoid any situations that might expose my immune system to a virus, fugus or bacteria. No crowds, no grandchildren visits, no stores, no movie theaters, and no restaurants. Yet I find myself starting each day with the same sense of enthusiasm and love of life as my 9-10-year-old summers use to provide.
I’m not alone. I see the same sense of attitude and perspective among the children who are struggling with cancer. In many cases they face years of treatments yet they a quick to show you their latest project or accomplishment with an enthusiasm for life that rivals the happiest of children.
My goals these days is to try and adopt their attitude. Let’s face it, part of me is just thankful to be here to wake up each morning but I’ve also made a conscious attitude shift to find as much joy and wonder in the little things as I can. Given a choice, I picked Loving.
Speaking of life, things are going well with the transplant recovery. The bone marrow biopsy 100 days after transplant is a major milestone for determining if the body is accepting the transplant and if you have any remaining signs of leukemia. My biopsy was at the end of Feb. and this week we got the word my body is 90+% donor stem cells an there are no sign of leukemia cells. We still have fatigue and Graph vs Host Disease issues we have to fight through (GI issues, skin rashes) as we work towards the 1-year recovery goal but so far they have been relatively manageable. The biggest issue is just being in isolation until the flu season is over and the immune system get a chance to strengthen.
So, thank you for all the prayers and support. I couldn’t have gotten here without it. Now on to the goal of a 5K walk in April.
It’s 3:40 in the morning and I’m sitting on the side of my bed waiting for the daily 4 am wakeup from the nurses. Time to give me pills and take my temp, weight and blood as we start another day. I’ve been in this position rocking back in forth with pain most of the night as I fight to deal with a painful bladder virus that results in urgent needs to go to the bathroom every 10-20 minutes. It’s been the same for the last 3 nights and 2 days. The longest sleep I’ve gotten is the 10 minutes between bladder spasms.
I just kept telling myself that today would be the day that the things the doctors were trying, or would try today, would get relief, I just need to hang on for a bit longer. Sure enough, like the last couple of days they did have some additional meds and procedures they could try. In answer to how fast they would work I was told there was no quick fix, they were sorry I had to go through this but the condition would have to run its course which would take weeks. For the first time I can remember I stared into black hole where I felt there was no hope, no relief and no escape. It was absolutely clear to me why people would give up. It’s amazing how long you can survive on hope and prayers and how quickly your will power collapses without it.
As it turns out the doctors were able to put together meds and procedures (tubes into my bladder) that basically knocked me out for a few days so I could sleep and regain some of my strength. One lesson learned; when the doctors and nurses start apologizing for the pain it means they are struggling to find a solution that will help.
I won’t bore you with all the ups and downs of the transplant process and the resulting trials to fight to recovery but now that my hands are not shaking as much (from the steroids) and my mind is a bit clearer (reduction in the pain meds) I wanted to update everyone who have been so supportive and let them know where we go from here.
I arrived home yesterday, 3 months to the day from when I entered the hospital. As we talked about in the last blog, the first week was all high intensity chemo as they killed off all my existing stem cells to make room for my donor cells. At the end of the chemo they fly in the stem cells from the donor (mine came from Germany) and after a two-hour transfusion I have a new stem cell and blood manufacturing system. Well actually what I have is a bunch of new stem cells that now need to find their way into the organs, potentially fight off existing cells, and establish themselves as the new “alpha male” of your cell system. How quickly and how well your body adopts the new stem cells and how much push back you get from your organs determines the speed and side effects of adoption. The doctors use 100 days as the measuring point to determine if the grafting has taken, how well it has taken (what % of the stem cells are from the donor) and how to manage any long-term side effect (immunotherapy you may need). During those hundred days is when a lot of the problems occur with some of the worst being associated with organ rejection or what is called Graft vs Host Disease.
For the first week or so most of my issues were with my digestive system. At times it can be hard to eat anything and the dozens of pills and IV meds can not only wreak havoc with the bowels but give you cotton mouth so bad that you literally can’t swallow pills. Not that you miss eating given your taste buds are all screwed up. Foods either have no taste at all or taste like your sucking on samples from a chemistry set. Your skin becomes so thin that it tears like wet paper and as fatigue sets in and you spend more time in bed, bed sores (looks like a bad case of road rash) develop on hips, knees and elbows.
It was around the second week after the transplant that I contracted the BK virus. It thickens the walls of the bladder and causes the urgent and painful spasm that make you feel like you need to urinate even when there is little or nothing there. What you do end up passing is blood and blood clots. The urgency comes on every 10-20 minutes and ultimately got so intense it would wake you from a sound sleep.
In addition to the BK Virus, the stomach/digestive problems that were preventing me from eating were getting worst. I was living on raspberry and lemon ice augmented with occasional lactose free ice cream. The combination earned me a free trip to gastrointestinal lab for exploratory endoscopy (mouth to stomach scoping) and a colonoscopy (bottoms up). In addition, I had the joy of a Foley catheter inserted to help drain the clots from the bladder. The results of the tests showed I had developed some Graft vs Host (GvH) in the stomach that coupled with gastroparesis was the reason I couldn’t get any food down. After several weeks of not eating they decided I needed a feeding tube put in. They run the tube up the nose and down the throat through the stomach and into to the intestines. You have to be awake to help with the process and it was by far the worst of all the invasive procedures. They got as far as my stomach but ran into problems and after a half hour of sliding tubes in and out they finally gave up. They suggested I could come back the next day and try again. I told them where they could stick their tubes.
The worst was the BK Virus. They could mitigate the pain with meds but it didn’t suppress the urgency or the blood clots. Once they put in the Foley the clots could flow without me getting up and then they used a series of meds to effectively knock me out for a couple of days while I rebuilt my strength. It’s amazing what difference sleep can make.
By week 7 we had a routine that was working for sleep and managing the BK Virus. The next two weeks were spent reintroducing food into my system and getting me out of bed. For a while I was so weak I needed a walker to get around. Never thought I would see that day.
The next step in the recovery process is to meet the criteria to get out of the hospital into a nearby care facility called “Hope Lodge”. This allows you to be close to the hospital for regular check in with the doctors but gives you the freedom to stay with your care giver. To move to the Lodge required I could eat solid food, I could take all my meds as pills (no IV) and I could get around short distances without a walker. By the end of week 10 we headed to the lodge.
Three weeks at the lodge and we were given the green light we could go home. My counts are looking good and while we haven’t hit the 100-day mark yet, we are 100% donor stem cells. We go back to the hospital now once a week for tests and we continue in isolation until the immune system can build up enough to protect me from infections. Taste buds are coming back slowly, hands still shake but doing better, my skin (which had turned brown) is peeling off and is still thin, hair has a way to go, and my appetite is back (although the stomach is still sensitive). Worst part right now are the pills (more than 40 a day) and the fatigue. Climbing a flight of stairs is an invitation for a round of heavy breathing.
I won’t try and predict how things go from here. In my last blog I talked about being home by Christmas so clearly, I have neither the ability to predict or any control of the situation. For at least the next couple of months we are in isolation with the exception of once a week heading off to the hospital for tests and biopsies. I suspect I won’t be out in public much till we at least get through flu season. No complaints though, for now, just being home is a blessing.