Paul's Heart

Life As A Dad, And A Survivor

NYC Hat Trick Complete

Do not get all excited… I am not making reference to the Rangers, I am a Flyers fan. But I had three very successful days in New York City, hence why I say “hat trick”, a hockey term for three goals scored by the same player during a hockey game.

I travel at least once a month, and depending on the amount of appointments, sometimes days for my follow up appointments for cancer survivorship at one of the best cancer hospitals in the country, Memorial Sloan Kettering Cancer Center in Manhattan.

I get asked all of the time, why I travel hundreds of miles to seek out my survival care when I am surrounded by many hospitals locally. It is simple. Cancer survival has not caught on in this country yet where survivorship is a specialty in medicine. Years ago, cancer survivors were lucky to survive five years. Today, they live for decades as I earlier in the month. But the research and education of survivors like me is still a new concept and only a relative few have taken extraordinary measures to study the long term effects of cancer therapies on people.

While the majority of my testing can be done locally, the real important stuff I leave to the experts in Manhattan, one of which has studied Hodgkin’s Lymphoma for over thirty years and heads the survivorship program at MSKCC. He travels around the world educating others on the needs of long term survivors. I deal with a dozen different disciplines of medicine for my needs and there is no one I trust more, other than my primary care physician who I count on to be my advocate with the uneducated here if a need arises.

The great thing about dealing with MSKCC is that they know I have to travel a great distance to get there. A dear friend once told me, “don’t let economics determine your health care.” So over the last three days, I had three different appointments and two procedures, all of which are part of my survivorship plan. On Monday, I dealt with my survivorship guilt and dietary needs. On Tuesday, I underwent a colonoscopy and endoscopy. And today, I saw a dermatologist for the first time ever. Considering the radiation level I was exposed to (4 times the lifetime maximum), the doctor was shocked how “clean” my skin looked, not one hint of basal cell carcinoma.

There are some who might say, “don’t you ever get tired of seeing all these doctors when there is nothing wrong” to which I usually reply, “I don’t want there to be anything wrong, and they have done their job well.” I am lucky that I have so many professionals looking after me and my survival. There are literally millions of cancer survivors out there who do not have any follow up protocol or plans because they do not know that many of their issues are caused by their survivorship.

There is a reason I go to MSKCC. Because the chemotherapy and radiation therapy, and diagnostic surgeries changed my body. And unless you are knowledgible with radiation fibrosis syndrome or other side effects like it, makes no difference if you are the world’s best surgeon if you are not prepared for severely scarred lungs or veins and arteries, dealing with compromised immune systems. Yes, I go all the way to NYC, just in case a mistake happens and I have experienced people who know what to do with that “oh shit” moment.

I am waiting the results from yesterday. But today I got an “all clear” and “see you next year” from today’s appointment. I like that. My really big appointments are coming up in April, which also happens to be when the anniversary of my surgery comes up. So it is that month that all my cardiac testing gets done, as well as my pulmonary, and see the big dog in charge of my care for my annual follow-ups.

I needed a break as I have been dealing as caregiver for my father battling lung cancer. And it has been difficult juggling between his needs and mine. And now that I am done with my appointments for the next six weeks, I can give him my full attention to get him through his battle.

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