Saturday, April 13, 2019

Marathon Week

Image result for boston marathon start lineMonday 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.

Sunday, March 24, 2019

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”.  

Sunday, February 17, 2019

A different kind of Marathon

Image result for image journeyNormally 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.


Sunday, October 14, 2018

Another day in Paradise

Image result for child in hospitalHave 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.


Saturday, April 14, 2018

The Child Within

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.

Saturday, March 3, 2018

Living or Loving Life?

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.

Sunday, January 28, 2018

Living Dante's Inferno

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.

Saturday, November 18, 2017

Becoming a new man!

Well it’s official, I have my new stems cells and a new birthday.  
It happened on the evening of 11/3 with Pam by my side, 3 nurses, and two doctors.    It was about as exciting as watching grass grow or paint dry.   Now the fun starts.    But I’m jumping ahead a week…let’s go back to the week leading up to this.

Admissions was a breeze and within a couple of hours I was all set for my first round of chemo.   So that I don’t get lonesome while here, they’ve hooked me up with a partner 24 hours a day (you may remember Olive Oil from my last stay.   This is her big more aggressive sister ….Posion IVy).   She can be pretty nasty at times, like when she’s pumping double doses of chemo.      She’s not the prettiest thing, skinny as a pole but with more pumps than a water treatment plant.  We are about as close as you can get without a marriage license, literally attached at the chest (Pam won’t  admit it but I think she’s getting jealous).   She doesn’t talk much but unfortunately she has an annoying beeping sound  (think Road Runner cartoon),  and  an incessant rattle when I take her for walks.    When we come down the hall we sound like a rattling old trash truck backing up (beep- beep, rattle, rattle, rattle….there’s probably a beat for a song in there somewhere) . 

There are approximately 20 rooms on the floor (transplant/serious cancer treatment ward) and most of the time they are fully occupied.  While most patients are not here for 30+ days there are a few like me.   There’s no place on the floor for socialization and  given most people are in semi-isolation the only place you meet is walking the floor (kind of like parents meeting when they take their kids to soccer practices/games).    There’s a protocol for walking the floor that I’m just beginning to figure out.   After a couple of near misses with the nurses they  have decided I need more of a challenge to slow me down so they have started putting obstacles in the hall to make the walks more challenging.  It’s like I have my own Tough Mudder/Spartan Race going on the 5th floor of the hospital.
As you might imagine, good hygiene is critical, especially given the inability to fight infections and the highly toxic nature of the chemo.  Because the chemo literally oozes through your pores,  I’m supposed to shower twice a day to wash it off and keep my clothes from becoming a waste treatment project.   We literally have to put them in plastic bags and Pam has to wash them separate from other clothes.    And no…they don’t glow in the dark.  Yet.

Having gone through that nasty phase when the hair comes off in clumps and the soap looks like a chia pet after showers, (BTW Walmart now sells a Trump Chia Pet.  Not sure how the comb-over works) hygiene is a bit easier for the “hairless wonder”.  The biggest challenge is keeping the chest port and bandage dry.  We cover it in this miracle wrap call Glad Press and Seal.  Amazing stuff, sticks like a second skin when applied and then peels off easily when you are done.

We did a week of chemo (three different kinds to make sure we kill off everything) followed by a day and a half of rest before doing the transplant.   Much like last time I lost the sense of taste in the first few days and the few things I could eat (pudding, ice cream, Italian ice) all tastes like chewing on a rusty shovel.   There’s a sense of irony that now that I can eat anything I want to keep my strength up I have no appetite.

The chemo is designed to wipe out your cell generation process so there is room for the new stem cells to come in and “graft” to the body.   They first graft into the bone marrow to start producing healthy new white and red cells as well as platelets.  Until they do (takes about 2 weeks) you get transplants of platelets and blood to replace what is not being produced by stem cells.   Pretty interesting to watch if you don’t have to go through it as you can see which parts of the body react first to not getting new cells (mouth, throat, digestive system, skin, and hair).    Mouth and digestive system are the worst.   Mouth/tongue is so sore that just brushing tongue against your teeth is like licking electrical wires.   Throat is so sore and constrained you literally can’t get a pill or a sip of water down.   All your meds have to switch over to interveinous.  I have a suction machine like at a dentist so I can clean any saliva or post nasal drip out of my mouth without swallowing.   Feet and hands are the first to go on the skin.   You molt your skin like a snake or it flakes of in chunks. 

The goal for the next two weeks is just to get through this phase and have the new stem cells start to generate new cells to rebuild your body.    There are lots of medications to treat each symptom as they come up and then drugs to treats the drugs you are taking for the symptoms.  I’m not a big fan of pain medications but it was a necessary part of the regimen to get through the process and help the body recover.

We are now at 3 weeks from the start and two weeks from my graft and it looks like it’s moving smoothly.  New cells are being generated and the body is starting to heal itself.  But with Phase 1 over (start of grafting of the stem cells into bone marrow) Phase 2 is about to start.  In an overdramatic depiction of phase 2 your body goes to war with itself.  As the new cells try to take up residence in the organs there is wrestling smackdown, organ by organ (skin, kidney, liver, etc.).  The process will take another 1+ weeks and with a lot of help from auto-immune drugs, determine if the new cells graft into the rest of your system smoothly.     During that time your body is treated to wonderful reactions such as stomach cramps, nausea, diareah, muscle weakness, fatique, and headaches.   All this while fevers are spiking periodically as the two sides slap each other around.

That brings us up to speed.  I will be in the hospital another week as we work through the grafting and healing and then be staying at the Hope Lodge next to the hospital to be available for daily treatments for another 2 weeks or so.  After that we play it by ear as the development of Graft vs Host (the fight for the organs) can take place over a longer 90-100 day period.     Fingers crossed I’ll be home for Christmas.

Thursday, October 26, 2017

Embracing the Suck

Have you ever stumbled on a song that is particularly relevant to where you are in your life and it just resonates at an emotional level?  If you haven’t, drop me a note and I’ll fix you up with a good therapist.  

Like most people I enjoy listening to music.    Mostly I listen to pop and rock and I can be caught humming along with songs on the 60’s and 70’s channels (humming is the best I can do…I’m not allowed to sing in the presence of others).    I’m not a big classical or country western fan but I do like some music from both.  I am a fan of Rascal Flatts and when they came to town over the summer I made plans to get tickets.  Unfortunately, with the chemo treatments I wasn’t allowed in crowds so it was a no go.   Another item for the bucket list.

Recently I came across a Rascal Flatts song/video that struck a chord (pun intended).    It’s called Skin and here’s a bit of the lyrics:

Sara Beth is scared to death
To hear what the doctor will say
She hasn't been well, since the day that she fell
And the bruise it just won't go away

So she sits and she waits with her mother and dad
And flips through an old magazine
Till the nurse with the smile stands at the door
And says will you please come with me

Sara Beth is scared to death
'Cause the doctor just told her the news
Between the red cells and white, something's not right
But we're gonna take care of you

Six chances in ten, it won't come back again
With the therapy we're gonna try
It's just been approved, it's the strongest there is
And I think that we caught it in time
And Sara Beth closes her eyes.

Sara Beth is scared to death
As she sits holding her mom
'Cause it would be a mistake for someone to take
A girl with no hair to the prom

For just this morning, right there on her pillow
Was the cruelest of any surprise
And she cried when she gathered it all in her hands
The proof that she couldn't deny
And Sara Beth closes her eyes

 I suspect anyone who has hung in reading the blogs for the last year and a half are as tired of hearing about Leukemia as I am writing about it (or living it).    As I head into the next (and hopefully final) round of treatment, the Stem Cell Transplant (SCT), I’ve had a number of people ask me questions about the process so here’s a series of questions and answers that may help to describe the process.

What’s the difference between a Stem Cell Transplant and a Bone Marrow Transplant.     Basically, they both do the same thing, replace your existing stem cells in your bone marrow with new stem cells that are not polluted with Leukemia.   Traditionally this was called a Bone Marrow Transplant because the donor would have the stem cells extracted from their bone marrow (much like my bone marrow biopsy…big needle stuck in the back of your hip bone) and then likewise injected into the bone marrow of the patient.   Recently they have come up with technology and medications that make the process simpler and less painful.   The donor is given a drug for several days that will draw the stem cells out of the marrow and into the blood stream.  The donor is them hooked up to a machine that takes the blood out of one arm, skims out the stem cells and puts the blood back in their other arm.   The process can take 4 to 5 hours and sometimes is spread over a couple of days.  Once the stem cells are obtained they are infused into the blood stream of the patient where they will settle into the bone marrow after a couple of days.   This process is call Stem Cell Transplant.

Don’t you have to get rid of the bad Stem Cells before the transplant?  Great question.  Yes, killing off the existing stem cells is the first step in the process.   The first 6 days in the hospital will entail heavy daily doses of chemo, in my case three different kinds (not that you likely care but it will be Busulfan,  Fludarabine, and Cytoxan).    These will wipe out all the stem cells which in turn will result in no white blood cells, thus leaving the patient defenseless to any bacterial, viral of fungal infections.    After a day of rest the new stem cells will be transplanted.  

What happens after the transplant?   It takes a few days for the new stem cells to settle in and then about another two weeks before you start seeing an uptick in the neutrophils (the infection fighting white blood cells).    During that time the new stem cells, which generate your red and white blood cells, will not be generating enough cells to keep up with the ones dying off.  The parts of your body that typically require new replacement cells every few days (like your skin, mouth lining, stomach and intestine lining, and hair) will deteriorate.  Hair falls out, skin flakes off, mouth lining can peel off and mouth sores can form, loss of taste, eye infections and of course loss of appetite, nausea, and nasty lower intestinal effects.    It becomes important to avoid any activity that could cause bleeding since platelet levels will also be low (these of the cells that control clotting).  No razors, no falls, no flossing and care when brushing your teeth or blowing your nose.   You will get more blood and platelet transfusions than a vampire at an all you can eat buffet.    Eating can be a real problem both because of the mouth sores and loss of appetite.  Weight loss is a given (surprised some idiot has not put out a book recommending chemo as a weight loss program).

How do you know if the new stem cells are working?    What the doctors will test for is 100% chimerism, meaning all the stem cells in the body are from the donor.   If that is not the case then you may get another dose of stem cells from the donor to try to boost your chimerism.    The real test is whether the new stem cells are generating new and healthy blood and stem cells.   Assuming this is the case, and the patient has been fever-free, then within 30+ days the patient can be released from the hospital.   Daily follow on care and testing may be needed at this point and may require staying near the hospital.

What are the side effects of the transplant?    In addition to the issues mentioned above, the biggest issue is the new stem cells attacking parts of the body that they see as foreign.   This is called Graft vs Host (GvsH) and it comes in two flavors, Acute and Chronic.   The areas most affected are skin, liver, lungs, and gastrointestinal tract although it can also affect the heart, kidney and bones/joints.    Acute GvsH typically happens within the first 90 days and can be life threatening because the system is so weak.   Auto-immune drugs are part of the treatment and one of the reasons patients need to stay close to the hospital after transplant.  Chronic GvsH can occur up to two years after transplant and while not as intense as Acute it can last much longer (on average 2.5 years) and can leave patients with some long term or permanent disabilities.

What if the transplant doesn’t work?  There is a chance the stem cells will not graft or alternatively the cancer reoccurs.   In those cases, the options are limited.   Relapse typically occurs within the first 2 years although the doctors will monitor out through 5 years.   Odds for someone like me are about 50/50.

For those that care about the details I hope this helps.   Day one for me is tomorrow 10/26 and I’ll get my new stem cells on 11/3 (they tell me that’s my new birthday).    I’ll be in the hospital around 4-5 weeks and then in the outpatient facility near the hospital for another 2 weeks.   It’s appropriate that I’ll be in the nightmare of chemo on Halloween, getting my new stem cells a little before my real birthday, will find out if the stem cells are taking on Thanksgiving and my present for Christmas will be getting back home.  Not sure if I’ll be up to blogging during that time but I’ll try to get a few updates out when I’m able.   No promises on how coherent they will be but they are bound to be entertaining.