Adventures In Cancer Land or How I Caught Up On My Jello Quota

“Well, in our country,” said Alice, still panting a little, “you’d generally get to somewhere else—if you run very fast for a long time, as we’ve been doing.”

“A slow sort of country!” said the Queen. “Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!”

I remembered this quote from Alice in Wonderland and then saw it quoted in “The Emperor of All Maladies”, a book tracing the history of cancer that Kristina has been reading. Because we have been preparing for and then beginning our Summer travels I have not been able to write but, this quote has been prowling in the back of my mind.

We annually leave Shreveport for three months out of the year to Summer in New York State and having cancer added a new wrinkle to those preparations. I had to make arrangements with an oncologist and hospital in New York, send my records, etc. I had been calling my health insurance company in Baton Rouge trying to understand how all this worked. On my third call, as I received yet another equivocation to a straight forward question I asked in frustration,”Is there any way I can talk to someone in person?” Turns out the Shreveport office is quite close to where we live. I immediately went there and, without an appointment, made the arrangements for our trip. Part of the process was getting assigned a case worker and going through an interview with many questions. One of the questions was,”Do you feel hopeless.” I answered in the negative but immediately thought,”What does that question even mean anymore?”

Of course I am hopeless. All the doctors say it. But I don’t “feel” hopeless. Because no one can rule out a miracle.  Because I choose to accept death as a part of life. Because I’m lucky enough to not to go through this process by myself. Somehow I have been blessed with a psychic constitution that always seems to rise up from despair. Which, as I’ve said before, distinguishes me from my father and brother. I don’t know if I’m just lucky to have this ability or if I cultivated it in some way. However it came about next time I’m asked if I feel hopeless I’ll paraphrase John Maynard Keynes and say,”Well, if in the long run we’re all dead shouldn’t we all feel hopeless?”

Getting ready for our trip we hit our first snag. We planned to leave so we could arrive in Oberlin for Eliot’s college graduation. Unfortunately I came down with a cold which developed a fever. We went to an urgent care doctor who, as part of the diagnostic process, hooked me up to an EKG machine and found out I had atrial fibrillation. We went to the emergency room and I ended up in the hospital for two days.

I have never been hospitalized until now. It was an odd experience on many levels. I didn’t feel sick at all. Only a little disappointed that we would miss the graduation. It’s easy to poke fun of hospitals. Many comics have done routines about the absurd hospital procedures. Of course they woke me up to take a blood sample at three in the morning. Yes, I was suffering from a heart disorder and was served bacon and eggs for breakfast. I definitely caught up on my yearly Jello quota. But, perhaps the most absurd part, was constantly reminding my doctors that I had terminal cancer. One doctor actually said,”Oh, that’s good to know.” One of the cardiologists was telling me how he suffered from atrial fibrillation and the time between recurrences was several years. To which I replied, “Great, apparently I don’t have that long to live so we don’t have to worry about it.” We both got a good laugh over that one. Honestly, I received great care and it was better than having a major stroke while driving in the middle of rural Kentucky. But I was glad to get out so we could start our trip.

Isaac was able to attend Eliot’s graduation and then the two of them traveled up to Potsdam, New York where Kristina and I met them the next day. Potsdam is where Kristina grew up and her family still has a house surrounded by many acres of land. It’s in the St. Lawrence Valley not far from the Adirondack Mountains and, well….a picture is worth a thousand words.33854340_1731174400294102_2956663578284785664_n.jpg

Sure beats Louisiana in the Summertime!

We met with the new oncologist in Syracuse a few days after we arrived. To our surprise he told us he wanted to stop the chemo therapy and monitor my situation. This was the opposite of what Doctor Patel in Shreveport had been recommending. While we were still in Louisiana discussing going to another doctor in New York I asked who would take precedence. Dr. Patel said,”The doctor in New York would be the chef” , but we could call Louisiana anytime to talk to him if we had questions. The New York doctor’s reasoning was: since my last two CT Scans showed no change, the risk of more neuropathy and possibly hurting my kidneys out weighed the benefits of continuing chemo. Kristina and I were stunned. What was I going to say? “No. I insist we keep up with the chemo. I like lying on the couch being nauseous for days.” We called Dr. Patel and talked to him. And here’s what Kristina and I remembered about all of this. The doctors can only prolong my life. They can’t cure the cancer. We aren’t choosing life or death. We are choosing how I live my remaining days. Dr. Naqvi in Syracuse was offering a chance to enjoy our Summer. If, perhaps, it meant my life ending a few weeks earlier we were willing to make that bargain.

One of the reasons stopping chemo therapy was so enticing is that we spend two months of our Summer at the Chautauqua Institution where I perform with the Chautauqua Symphony Orchestra. The schedule is so hectic that if I continued with  chemo I wouldn’t be able to participate in all that goes on there. We were excited at the prospect until, around three weeks after we stopped therapy. My lower left back began to ache. It is a pain I had toward the end of last Summer that I now know was the onset of my cancer. I had another CT Scan and Dr. Naqvi confirmed the cancer was growing so this Friday I start immunotherapy. The good news is that immunotherapy won’t make me nauseous and it only takes an hour to administer as opposed to the all day affair I’ve been doing with chemo therapy. The bad news is this is the last arrow in the quiver.

So, I am running as fast as I can to stay in one place. I can’t run twice as fast to get somewhere and I honestly don’t want to. Kristina, Eliot, Isaac and I are all together. My sister-in-law Ginger and her family visited Chautauqua last week and my sister Janet and nephews Alex and Ben are visiting next week. Right now I’m celebrating the Fourth of July with Kristina’s family in Potsdam. If all goes well I might be able to stay the entire season in Chautauqua.

I’m thinking time is a strong wind. If I don’t run it will blow me backwards and I will live only in the past. If I try to run forward the effort will exhaust me and I will be living in a precarious, short lived future. Running to stay in one place is the spot where the sweetest part of life seems to be for me right now. It may sound absurd on the face of it but my life has been absurd since I was diagnosed. The more absurdity I embrace the more life I live. Feel free to put on some running shoes and join me. It’s scary and exhilarating at the same time!

BTW Happy Fourth of July everyone.

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5 thoughts on “Adventures In Cancer Land or How I Caught Up On My Jello Quota

  1. What an inspiration you are, Pete! Maybe you are tired of hearing that comment, but your positive outlook and focus on living in the present certainly resonate with me. I didn’t know you were such a philosopher. We thoroughly enjoyed our time at Chautauqua last week. Seeing (and hearing!) you play in the Chautauqua Symphony was definitely a highlight for me, especially the Dvorak.
    Take care, my friend. Our thoughts are with you and your family.

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  2. Thanks for sharing what you are going through. It is moving and inspiring to be part of the concern, openness, absurdity and what even feels like the adventure.
    Sending love and wishes for a great time at Chattauqua.
    BTW, my very good friend David Allyn will be up there with his daughter Jordan…

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  3. Thank you for giving some insight into what your life has been like recently. The details you share clearly give me a sense of what you’re experiencing at the moment, and I truly view that as a gift.

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  4. Haven’t heard from you since September…hoping you are still in that sweet spot of running in place. Sending love, sweat and tears my friend!

    Tig

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