Blood on the Trail - 7/3/21

As an avid hiker I assumed the pain in my toes was from my descents down the mountains but when it didn’t go away I assumed it was something else. I tried insoles. I went to the podiatrist but the burning still occurred. The frequency increased. This past December 2020 my doctor ordered blood tests. Those tests detected an elevated platelet count and I was sent to an oncologist who did more blood tests that detected a JAK 2 mutation. I had no idea what that was. The oncologist told me I had Essential Thrombocytosis, a blood cancer known as a Myoproliferative Neoplasm. Once I heard “blood cancer” I think I heard the doctor’s every-other-word. I was shocked and couldn’t believe it. I decided to go to Boston to get a second opinion. Dr. Hobbs, from MGH, ordered more blood work and a bone biopsy. I was then diagnosed with Polycythemia Vera, another Myoproliferative Neoplasm, a blood cancer that elevates red blood cells and can effect platelet count. PV trumps ET. She recommended I immediately start phlebotomy therapy every two weeks. Having a fear of needles this was, and still is, a harrowing thought. 

When the doctor told me I had a rare blood cancer, that word “cancer” hit me hard. What did I need to do? How much time did I have? What will Jess do? Is my will in order? Should I arrange my funeral so my family doesn’t have to? I need to repair everything on the house that I’ve been putting off. Do I tell my kids? My Dad can’t lose a third child before he passes! The word “Cancer” holds so much power if we let it. I asked my doctor how much time I had. She said as long as I follow all of the recommendations I should live at least another 14-20 years, if not longer. I needed to do everything possible to combat a blood clot and hope that it did not mutate into Leukemia. Okay, what do I need to do?  She gave me a list:

1. Lose weight; (I then dropped 30 pounds since Christmas)
2. Follow a heart healthy diet and stay away from iron-rich foods
3. Stay away from sugar
4. Stay away from red meat
5. Take aspirin every day
6. Undergo phlebotomy treatment
7. Exercise every day 

I felt empowered. It’s a “Cancer.” It’s one that can be managed but not cured. I started to realize I had some control. This was not going to define me or stop me from living a happy & joyful life. “Real courage is when you know you're licked before you begin, but you begin anyway and see it through no matter what” (Lee; To Kill a Mocking Bird). I believe optimism and hope are disciplines. I refuse to let go of them. With the constant support of Jess we carved out yet another plan. I told the kids. Yes, I started repairing the house, No, I haven’t told my Dad, there’s no need. I will not burden him with this.

I have hiked all over New England and New York including the “The New Hampshire 48- 4000 footers,” and “The New England 67- 4000 footers”. I have also done some hiking in Scotland. In my life whenever I face struggles I take to the mountains. It allows me to focus my mind and spirit on my “next steps.” It’s where I go to recharge. I needed to have a positive impact on my circumstances. I decided I would attempt to hike a big one on my bucket list- the Long Trail in Vermont; a 272 mile (with 65,370 feet of elevation gain) hike from south to north through the entire State of Vermont, as a fundraiser. I always wanted to hike it- why not do it with a purpose?  I have never attempted anything that would place me on the trail for this long. Success is attained step by step much like hiking. While hiking you will slip and fall, you will deal with pain and discomfort. You will be wet and cold, you will descend and ascend but you will also witness bucolic vistas, magnificent sunrises & sunsets, babbling brooks, majestic waterfalls, cooling rivers, industrious wildlife, smells and scents that feed the soul. Hiking is an easy metaphor for life. One that fuels my spirit. Once you ascend to the mountaintop you invariably descend to the col or valley only to eventually ascend another mountain. In Life we will have successes but “Success is not final; failure is not fatal: It is the courage to continue that counts.” Churchill. Those times in the valley, literally and figuratively, that is where we reflect, where we gain our strength to ascend again; to gain perspective and understanding. The trail trains my approach to life. Although the trail is long and the seed is sowed I’ll meet you further on up the trail. One sunny morning we’ll rise I know and I’ll meet you further on up the trail.

If you feel so inclined I would appreciate if you would please consider donating to the Myelproliferative Neoplasms Research Foundation (MPN Research Foundation).