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