The Boy in the Bubble

Or maybe I should say the Man in his Man Cave.    From jetting around the US to a self-contained bedroom/bathroom, my world has gotten pretty small pretty fast.  But in the context of what I’m going through it truly doesn’t matter.

This week’s blog starts with the first phase of treatment called Induction.   The first phase of Induction is the actual chemo therapy treatment.    As I mentioned last time, the goal of the chemo is kill off all the white blood cells that have gone rogue.  In my case it’s the neutrophils, the little guys that protect the body from infection.    To do this they put me on two chemicals that target those cells in what they call a ‘7 and 3 treatment’.  For 7 days you are on one of the drugs for 24 hours a day while the other one is pushed through your IV once a day for the first 3 days. 

Speaking of IVs, the Friday the chemo was started (the day after the bone marrow biopsy), they do a small operation to put in a PICC line.  Way cool.  They use ultrasound to locate a vein in your upper arm then they make a small incision and thread a plastic tube into the vein, up your arm and into your chest.  The arm end is held in a snap mechanism that they can then attach the IV tubes to (I have two dangling from mine).   Given the amount of times I was stuck to give blood or receive fluids up to this point, this makes life so much easier.  Kind of like having and outside faucet vs having a plumber come to your house every time you need to use a garden hose.

PICC line is in, the prep drugs are being pumped in and by the evening Friday they hooked me up to the chemo drugs.    Lots of questions at this point…If the chemo is only on for 7 days, why am I in the hospital 30+?   When will I start feeling bad?   What are some of thing that will happen to my body as a result of the chemo?

The reason for the long hospital stay is to assure your body has recovered enough for you to leave isolation and face the germs of the real world.   You are not cured after Induction, but treatment from there will depend on your type of AML (which you will likely know sometime between day 7 and day 10 after the bone marrow biopsy cytogenetics are complete).   The measure for going home in my case will be the rate I am able to create good neutrophil white blood cells and platelets.   It would not be good form to get all the way through Induction and then succumb to the common cold or a cut while shaving when you get home.

I asked the question of when I will start feeling  bad and when will I start feeling better a half a dozen times but I kept getting the same answer…You start feeling bad around the end of chemo (day 7) and It will get worst through about day 18body .  You should turn the corner and start feeling better by day 21.  However, every patient is different and your mileage may vary.   The last 9-10 days of the 30 are to allow your system to recover to the point of producing enough blood cells to protect you.  Oh Yeah…and they have a nice going away present for you just before you leave the hospital….another bone marrow biopsy.  

 

Here are some of the challenges and body changes you can expect as a result of the

-          Spiking Fevers

-          Mouth sores

-          Rashes (reactions to the meds)

-          Water weight gain…swelling

-          Nausea and Vomiting

-          Loss of hair

-          Constipation followed by bouts of diarrhea

-          Excessive Nose bleeds

-          Extreme Fatigue

-          Change in sense of taste

-          Reactions to transfusions

Most of the items on the list come and go at random times, usually just when you are starting to feel better.   Mouth sores, rashes, nausea, and hair loss however come and stay like a bad house guest. 

Some of these will start during the chemo phase but most come after when you are in the “Dead Zone”.  The dead zone is my name for the 2 weeks after the chemo when your body continues to kill off the bad cells and the system hasn’t “rebooted” to start generating new good cells.  This is also the time when there is the greatest chance of run-away infection and nonstop bleeding.  

For me, the first few days of chemo were uneventful.  You are on a cocktail of anti-viral, anti-fungal and anti-biotics while they wait to see how you are going to react to the drugs and the chemo.   My biggest problem is a couple of cyst like sores that formed on my back near the biopsy site  that have swollen up into what looks like little purple volcano’s surrounded by a bigger circle of red inflamed area.  Pretty uncomfortable when trying to lie in bed or sleep on my back.   My back/backside has become a curiosity for a variety of doctors and is getting more views than a new baby Panda at the National Zoo.    So far it has stumped the Oncology and Hematology DRs, the Infectious disease DRs, and the Wounds Dr. (I didn’t even know they had such a specialty).  Over the course of the week it continues to get worst.

By day 4 of the chemo I’m feeling the effects.  My weight has climbed 17 lbs, my appetite is pretty much gone and a mild stomach problem that I had before (Gastroparesis) has taken over the digestive system and I burp regularly as soon as I put anything in my stomach  (100-150 times in 10 minutes).   The nurses have taken to looking for a bull frog under my bed.   We’ve now added Gastrointestinal DRs to the long list of daily visitors.                          

Days 5-7 are more of the same.  As my system becomes less and less able to protect itself, we substitute drug cocktails.   It’s a combination of trying to find the right antibiotics to deal with the back,  the right anti-viral and anti-fungal drugs to fight off any potential external infectors as well as  drugs that can help the stomach and digestive system so you can keep the energy up and the fluids (and other stuff) flowing through the system.  Everything gets measured…what I call the “Goes-intas” and the “Goes-outas.  Privacy (or the lack there of) takes on a whole new meaning.

As you might expect, the body doesn’t take to kindly to being flooded with poison and then a variety of compensation drugs and this is where the symptoms mentioned above begin to appear.  I broke out in a rash, first on my neck and head and then spreading to my feet.   More adjustments to the drugs and some creams to help with the rash.  The “volcano cysts” on my back are getting worst, more drugs for that.   A lot of the drugs are administered as liquid IV so my fluid retention has gone up.   Weight is up over 22lbs from when I walked in the door a week earlier so there is also a drug to help me flush fluid from my system.  By the way, that last drug is called Lasix, pronounced the same as the corrective eye surgery.  When they first told me I was getting a Lasix treatment I marveled at what a full service operation they had where they would fix my eyes as well as my blood. 

As chemo winds to a close (day 7 of 30+) I’m still in good spirits, still getting in 60-80 minutes of walking a day,  and only dealing with 4 or so of the dozen potential unpleasant symptoms.  Of the 4 jobs I have…Eat, Drink, Sleep, and Walk…..eating and sleeping are the ones that need some work.   Walking presents some interesting challenges as I have to maneuver Olive Oil around a hallway full of portable computer stations, nurses, techs and other patients.   Keeps things exciting,

If you have questions feel free to post them on the blog site and I will try to incorporate the answers into future blogs.

Next time we will take on week one of the Dead Zone. 

Running may have saved my life

That’s a pretty dramatic statement but before we get into that, let me set the stage for the blogs over the next couple of months.   One of the goals when I started blogging on running the Boston Marathon was to give an insider’s view of what it is like to train for and then run the world’s oldest and most elite marathon.     Over the years I’ve had the opportunity to share the experience of running Boston in a range of situations including some crazy weather that almost cancelled the race as well as witnessing the bombing at the finish in 2014.   The one consistent piece of feedback I’ve received is that the blogs help to give the reader a sense of being there, of seeing the race from the inside out rather than through the eyes of the media.    This new journey is far less interesting and far more personal but for those that are interested I hope to provide that same insider’s view of life fighting cancer.     I don’t intend to go into a lot of medical detail (I’m not that smart and frankly find some of it really boring) but I’ll give a layman’s interpretation of what is going on.  I apologize in advance for the areas where it may not be medically accurate but I can promise it will be emotionally honest.

First question I get is “How did you find out you have Leukemia?”    It’s not as if you wake up one morning saying   “I think my white blood count feels low, I think I’ll go have it checked.”  I’m not a big fan of going to doctors so it would take a lot to get me to set up an appointment.  In this case what triggered me picking up the phone was a couple of slow runs where I struggled to get enough breathe on hills.  I could have just chalked it up to being tired, after all I had been ramping up the weekly miles and had just finished my first 17 mile run of the season.   Monday morning I call the Dr. Office and she squeezes me in for Monday evening.   We have a nice chat, she checks vitals, does an EKG to check the heart, does a lung capacity and blood O2 check, puts me on a nebulizer (basically breathe through a tube blowing mist for 10 min to open airways)  and takes some blood for testing.   Initial prognosis is asthma/restricted airway.    

During the day Tuesday and again on Weds they call to get more blood.  They didn’t provide a lot of info, just an acknowledgement that my white blood count (WBC) was low.   Weds midday they told me to head to the ER at the hospital for another blood test and consultation.    Late afternoon I met with the Hematology DR for the first time and she filled me in on my status.   White Blood Cells come in different types and have different roles.  In my case the Neutrophils, whose role it is to fight infection, were almost nonexistent (average is 3500-5000…I was 84).    Being totally naive of what this meant, I asked if we could treat it quickly because I have a marathon in 6 weeks.  She just stared at me and then she used the “L” word.  You could have knocked me over with a feather.    To be sure they needed to do bone marrow biopsy Thursday morning and given the fragile nature of my immune system they were checking me into isolation immediately.

Thursday morning I get a bit more information about what is going on.  In a very simplified explanation (because I’m just a simple guy)  there are three key types of cells in your blood…red blood cells which carry the oxygen around the body,  platelets that help you clot so you don’t bleed out when you have a cut or bruise,  and white blood cells to help fight infections.   All of these are generated by your bone marrow.  Effectively some of my WBC (the Neutrophils) had gone rogue.  They multiply at a faster rate and hang around longer but don’t function to help the immune system.   In addition they crowd out other cells like the red blood cells and platelets.  The net effect is lower immunity to colds or illnesses, longer time for cut or bruises to stop bleeding or heal and lower level of O2 in your blood from the fewer RBC.

It was the lack of O2 during my running that triggered the DR visit.   Lucky, cause either of the other two symptoms could have been fatal.   I guess you could say running saved my life.

The next question I get is “How did you come down with it?”   There’s no good answer to this question, for Leukemia or most cancers.  In my case it was a chromosomal change in my Neutrophils.   I suspect I will never know why.

“What is the treatment?’   It starts with a bone marrow biopsy.  Basically they stick a long needle into your hip bone and first extract some fluid from inside the bone and then core out a piece of the bone.   Definitely not something you want to put on your bucket list.    The result of that test gives them the basic info of the type of Leukemia you have which in turn set the protocol for treatment.   The results come in two stages…first the diagnosis of type (mine is AML Acute Myeloid Leukemia) the second is an understanding of the amount of chromosomal damage (cytogenetics) which determines the complexity of the downstream treatment.   

All forms of AML have the same initial treatment called Induction.   Leukemia is not treated with radiation since the problem is in the blood so the goal is to eliminate all the bad white blood cells and then hope that when your system starts recovering you will generate good cells (kind of like rebooting a computer).  They do this with chemicals that effectively wipe out your immune system but in the process it also lowers your platelets and red blood cells as well.  Thus the reason you are kept in the hospital isolation 30+ days as even the smallest cut, infection or virus could be deadly.

My Induction started Friday the 4^th.    Milestones are measured from this date.  In the next installment I’ll give a perspective on what it was like handling the chemotherapy.

God bless

A journey of a 1000 miles begins with one step.

Relative to my decade-long quest to complete 10 Boston Marathons in a row, it has been more like a journey of 8 million steps.  Like most journeys of this length, I didn’t start out with the idea I was going to do this for 10 years.  Initially it was a way to remember my son’s life, give something back in his name and for a long while, an avenue to deal with the grief.  The roads and the wind gave me a shoulder to cry on.   Over time the idea I could make an impact with the donations became the bigger goal but I needed a bigger challenge to grab attention and get support.  

There are about 20,000 elite runners who qualify and get accepted into Boston each year.   A little over half are men and less than 10% of those will be in my over 60 age group when we toe the line at the start.   At the end of the day there will be less than 900 runners age 60 – 64 who will finish. I would guess less than 20% of those will complete it more than 2 years in a row.   If I could avoid injuries, fight the weather and stay healthy for 10 years, if in the process I could run fast enough to requalify and get accepted into the race, and if I could actually finish all 10 in weather that would range from 40 degree days to 90 degree days, and include rain, hurricane winds and a terrorist bombing then truly that would be an accomplish worthy of asking people to fund the efforts of Help in the Nick of Time.  This has been my goal since starting the charity 7 years ago.

OK, enough history, let’s turn to philosophy.  Pretty much all of us have heard or maybe used the phrase “A Journey of a 1000 miles…blah blah” from the Chinese philosopher Laozi. It’s a timeless phrase you can use  for just about anything that involves a challenge (quitting smoking,  going to the gym, losing weight, getting to college, building a career).  It has the added benefit of making you sound wise and experienced.   Works great on a long road trips when your 8 year old asks “are we there yet” (Gaze off into the distance and with a thoughtful voice say “the vacation of a thousand miles begins with one step).   Totally derails the kid’s thought process.  

OK…what has this to do with my training for Boston this year?  The journey of 8 million steps is almost over.  For the last nine years, while I thought I was on annual quests to get to and finish the Boston Marathon, in truth I was on a decade long journey of healing and discovery.  That journey is about to end. But not at the finish line of the Boston Marathon.  Last week, during my 17 mile run it was clear I was struggling to keep my normal pace.  Within a couple of days I knew the answer, I have Acute Leukemia.

Am I angry?  Not yet.  Probably still in denial.  I’m waiting for the first guy who says “When life gives you lemons, make lemonade”.    Then I’ll go postal.  Sometimes when life hands you lemons you just want to throw them at someone…..starting with the guy who said “make lemonade”.

So now my life has totally changed.  For the next 30 days I’m stuck in isolation as they pump my body full of poison to first kill all my white blood cells and then watch to see if good ones or bad ones come back.  Unfortunately the chemo kills off the production of red blood cells (which carry your O2) and your platelets (which handle blood clotting).   So avoiding germs because I have no white cells to fight infection, no cuts or bruises because I have no platelets to stop the bleeding and limited exercising because I can’t get a lot of O2.    In my new world I’ve traded my 17 miles running for 17 laps around the hall pushing my new best friend….my intravenous tree we’ve named Olive Oil.   I also have a machine that does leg massages to keep the blood flowing.  We call her Helga.    You can tell that loss of red blood cells are affecting oxygen to the brain as well.

Now instead of looking like one of the zombie extras from the walking dead shuffling down the road on my runs, I’m one of those hospital zombies shuffling down the hallway pushing my IV pole, nodding to all the nurses and trying not to flash my backside through my custom tailored hospital gown. 

For the next 30 days or so I plan to change the blog over to my new journey.  When I feel up to it I’ll post info on what is it like to be on this journey and much like the running, give some of the emotional highs and lows.  For those of you that don’t care to follow this info just let me know and I’ll take you off the distribution list.   I fully understand…neither one of us signed up for this trip.  

I also want to thank all of you who have supported me through the years.  Words cannot express my gratitude or the gratitude of the people we have helped.  That effort will continue regardless of what happens.

Stay well and God bless!

Dave