My personal experience with cancer—Cancer III, II, I

New York, New York, Saturday, April 13, 2013: My third cancer is new. It did not present itself as a suspicious sign the way the lump (tumor) did under my right arm leading to a diagnosis of Hodgkin’s disease followed by major surgery and two rounds of radiation treatment when I was 28 years old. I am now 65.

My first cancer

The radiation did not prevent me from fathering a daughter Joanna (who graduates from nursing school next month and marries in October).

My second cancer

Then, 13 years later, an unpleasant surprise. A lump (tumor) appeared in my groin. My orthodox Jewish oncologist said, “It is a sheylah [a Talmudic term meaning a question which does not have an answer] whether this is a new case of Hodgkin’s disease or the return of the old one.”

Out of hubris, I had published an article in The New York Times under the title Learning to Live Again boasting of my cure, a boast to be repeated on ABC’s Good Morning America after an impressive limousine ride to the studio followed by a book with the same title (available on this site http://www.joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/) with the subtitle, My Triumph Over Cancer.

Now, with the arrival of my third cancer, Joanna expresses a familiar refrain over the phone from North Carolina, “Everyone knows nothing can kill you, Dad.” Then, she says, “Learning to live again and again and again.”

Amelia (whom I fathered after my cancer at age 42), who is teaching English in rural Spain, continues the theme calling on Skype (revealing her hair is growing long): “And again and again.”

As directed, finding an expert on Cancer III

So, here I am in New York City, a week and a day after I was diagnosed with renal cancer. My urologist had opened her laptop with the CAT-scan showing a very large tumor surrounding my right kidney.

The vividness of the image is startling—large tumor, large large tumor.

Will it kill me?

Can I avoid death?

The answer appears with an insistence:

I am told that I must find a surgeon better than any surgeon in town [i.e. State College]—the kind of skilled surgeon available at Pittsburgh or Philadelphia, only Pennsylvania has a limited number of surgeons of that caliber and finding one able to operate in April is unlikely.

I must go out of state—have an operation in 30 days or else the cancer from the large tumor wilI spread and kill me.

Run don’t walk to the best surgeon who can operate.

That’s the advice I follow.

Diagnosis on Friday at 4 pm.

I am on the phone on Monday to Memorial Sloan Kettering Cancer Center.

Yesterday (yesterday) I consulted at my urologist’s suggestion (yesterday) with Paul Russo a surgeon specializing in kidneys and cancer at Memorial Sloan Kettering Cancer Center (MSKCC). As he puts it, “I am a kidney surgeon warlord.”

A digression on traveling to NY by bus

It is worth pointing out—before getting to what the Kidney Warlord said—that getting from State College, PA to New York City is not easy for me. I cannot walk. The cumulative radiation from Cancers I and II burned a hole in my spine making me a paraplegic.

I can stand but I have to hold onto something. I get around on a scooter—a power operated vehicle (POV) scooter invented by Al Thieme (CEO of Amigo Mobility) to help his wife who had multiple sclerosis.

The scooter I used for the trip is a lightweight travel scooter which means that it folds apart easily, has remarkable power—climbing easily Manhattan’s hills and steep (sometimes very steep with deep cracks in the payment) curb cuts– is relatively light weight and is narrow (the place at which I slept last night had narrow hallways).

My friend PH came by my State College apartment shortly before 9 AM Thursday to take me to the bus. Megabus runs a double-decker (reminiscent of the buses I used to ride as a child down Fifth Avenue).  One problem with being disabled and riding Megabus is that to secure officially sanctioned accommodations one has to call the special disability number which in my experience takes as long as an hour for a simple bus ride plus the information does not reach the bus driver and on and on.

This time I decided to follow the rules that if I am willing to store my wheelchair (or other vehicle) in the luggage compartment of the bus, then I do not have to call the Disability Office.

I brief PH on what to tell the driver (who fortunately does not freak out as others have done). He removes the lift from the closet next to the bathroom, hooks it on the bus floor (so it does not slip when a scooter or wheelchair goes up or down).

I drive up the lift, move from scooter to chair, and PH, who knows how to take the scooter apart does so after leaving me on the bus chair and going down the lift to the luggage area. PH explains how Frank will have to put the scooter together when we arrive in New York.

This detail should make it clear (repetition is bad writing but good pedagogy) that traveling is not easy for me. The desire to save my life (as I saw it) overcame obstacles including the reality that I could not walk to the bus’ bathroom and had to tax my bladder to the limit. Enough said.

Background on Kidney Warlord consultation

So, there we are at Memorial Sloan Kettering Cancer Center (MSKCC) having arrived through a cold rain early for a 10 AM appointment. Since its founding in 1884 as a New York hospital devoted to treating cancer patients, MSKCC has established itself as a world-famous research and treatment center benefiting from the funding cycle created by President Richard Nixon and Congress. Nixon (of whom I cannot resist making disparaging remarks)–in what the White House press office described as “a Christmas gift to the nation”– began the War on Cancer by signing the National Cancer Act in December of 1971.  [Expect a return to this subject.]

I keep mentioning Sloan Kettering (as if it were a mantra) because it is regarded as one of the most distinguished cancer centers in the world (which also means it has its critics [and I have the opportunity to repeat myself again]). The surgeon I was scheduled to see is a hot-shot by any standards and (sadly) I have experience with cancer hot shots (remind me to tell you about the time…).

Paul Russo is on the staff of Cornell’s College of Medicine as well as Sloan Kettering and is widely published—see PubMed [an online index of biomedical articles maintained by the U.S. National Library of Medicine and the National Institutes of Health] for a full listing of his journal articles. One article is entitled, “The Role of Surgery in the Management of Early-Stage Renal Cancer.”

The first sentence reads: “There were an estimated 58,240 new cases and 13,040 deaths from kidney cancer in the United States in 2010.”

Here is how Dr. Russo describes his work: “I am a urologic oncological surgeon known for my academic work in kidney tumor surgery. My expertise includes partial nephrectomy, removing only the tumor using small ‘miniflank’ incisions while preserving maximal kidney function, and cytoreductive radical nephrectomy for patients with advanced kidney cancers. I also lead a kidney tumor surgical research team at Memorial Sloan-Kettering that has created nomograms predicting survival and renal functional outcomes.”

If you want to see a YouTube on cancer surgery for kidneys, go to Dr. Russo’s link: http://www.mskcc.org/cancer-care/doctor/paul-russo

The Consultation

Dr. Russo’s office suggested that I invite someone to the appointment which is an excellent idea because there were moments when I did not really hear what the doctor said. My friend Kathy graciously agreed to attend and Dr. Russo spent a surprising amount of time talking to her, which made sense because I was annoyed by how the appointment began.

“Are you irritated at me?” he eventually asked. “Yes,” I answered.

This is what I want: I want you to operate on me immediately, confirm that losing a kidney does not matter, that recovery from the operation (as I have been led to believe) is minor, and a swift operation will cure me of renal cancer by eliminating the tumor before the cancer has a chance to spread.

Dr. Russo said that I may not be suitable candidate for surgery—especially since the surgery he would perform is MAJOR surgery. I may not be suitable because I had a heart attack and have a pacemaker and am a diabetic.

Dr. Russo said that there is increased evidence that individuals such as myself who have multiple health problems do not follow the preconceived view that one kidney is enough. Losing a kidney might cause me significant problems.

Dr. Russo said that he orders his patients to walk a mile on the first day of surgery and two miles on the second. Since I am a paraplegic, I cannot walk at all. Not being able to walk could lead to significant complications.

Dr. Russo said that there is no rush. The tumor surrounding my right kidney is very large and could have been growing for 20 years. It is a good sign that the tumor was found by chance rather than as a consequence of symptoms. Perhaps, the tumor will continue to grow slowly and without causing cancerous damage. The thing to do is proceed slowly, and cautiously.

On Monday morning [remember, today is Saturday], Dr. Russo scheduled me for cardiac tests. In a month I return to New York to see him.

My reaction

I have been staring off in the distance looking at nothing thinking no thoughts. This was true a week ago when I was diagnosed with renal cancer and urged to rush to cut it out and it is true today after being told to proceed slowly and perhaps not have the operation at all.

The advice to rush and cut out the cancer immediately was comforting in its way. Once again I would be doing something to save my life. Doing something is better, in my book, than doing nothing—than waiting and seeing.

As it turns out, I believe Dr. Russo. He has performed more kidney operations than are performed by most countries. He is rewarded by the hospital when he performs an operation—discouraging operations is not good for business or reputation (at least, in the conventional sense).

Dr. Russo has convinced me to rewrite my figurative book and acknowledge that doing nothing may be better than doing something. As I type this, I have difficulty believing what I am writing in large part because I really do not see myself as a 65 year-old man with health problems. I see myself on many days as 16 and on most good days as capable of doing anything. Anything.

I am not 28 anymore as when I was treated for Cancer I. The decisions I make for the future ought to be made carefully because a well-lived life (the kind of life I want to live) causes joy and adds to the productivity of the gross domestic product. [This ongoing story will continue.]

–30–

Copyright © 2013 by Joel Solkoff. All rights reserved.

This posting is the second part of the ongoing story of my third cancer–kidney cancer, a story that follows this expanding outline:

1. http://www.joelsolkoff.com/who-i-used-to-be/

2. http://www.joelsolkoff.com/my-personal-experience-with-cancer-cancer-iii-ii-i/  [You are here.]

3. http://www.joelsolkoff.com/my-fear-of-the-future/

4. http://www.joelsolkoff.com/my-man-mozart/

 

2 thoughts on “My personal experience with cancer—Cancer III, II, I”

  1. SHIT! I am really sorry to hear your news! GOOD LUCK!
    Please call me if you want to talk.
    Bonnie

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