Tag: Paul Russo

The danger of “living wills”–a post surgical analysis

Of all my many preparations for surgery–including signing up for Premium Spotify [worth it]–creating a valid Living Will exercised far too much time.

I can and may list the valid rationale for having a Living Will, which here in Pennsylvania is called officially a Durable Power of Attorney.

Durable means (as lovers of the English language are encouraged to deplore) limited.

The person selected to execute my living will can only take care of my health care decisions–decisions I have listed in advance (see below) and which She, as it turns out, may only make following my explicit instructions (see below) and is not allowed to vary from my instructions at all.

My agent does not have authority to act for me for any other purpose unrelated to my health care. All of my agent’s actions under this power during any period when I am unable to make or communicate health care decisions have the same effect on my heirs, devisees and personal representatives as if I were competent and acting for myself.

To tell the truth, I would much rather watch a Shania Twain video than go through the gut-wrenching process of picking the person who will turn off the plug if I emerge from surgery a rutabaga.

Here is the video I would rather see than execute a Living Will.

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The problem with going into surgery which I knew would be successful (and indeed the surgery was successful) was encountering flak from a variety of sources.

One of these sources was my elder daughter  Joanna, who has two honor degrees in nursing and is convinced–perhaps rightly so–that she knows everything.

Joanna insisted that she be the one to pull the plug.

photo 2

In April I had had the foresight to executed a previous Living Will at my hospital bed, but once out of bed and back and forth to New York for reasons I will not explain (or may) I had to change the document.

For one thing, the April Living Will made the assumption that it was unfair to ask my daughters to perform such a task; my friends would spare them the guilt of pulling the plug. This assumption was wrong and in a way I cannot quite describe demeaning to them.

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In preparing for August surgery at Memorial Sloan-Kettering with the Living Will, I thought I was just going through the motions.

Then. Joanna said, “[Expletive deleted] I am a nurse. If anyone should pull the plug it should be me. Anyway, I would not be pulling the plug. I would be telling someone else to pull the plug.”

Meanwhile, my friend Pinhas had complained that in April he had been made second in line to pull the plug and wanted to be first; plus, my April number one batter up was afraid she did not have the medical knowledge.

Finally, Memorial Sloan-Kettering Cancer Center required (actually requested–it is optional) an updated Living Will plus other relevant documentation I will bother you with.

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My wishes. Clearly, some of my wishes did not matter at all. Others did, but not now–meaning not before August 8th and my kidney operation.

The primary reason I was filling out a Living Will was because I wanted to please the Administrators at the hospital where I was about to have surgery. If they saw that I was a responsible enough citizen to fill out the expletive deleted form, they would decide I was a right guy, guaranteeing some slack later when I behaved poorly–as I did.

I really and truly did not want anyone to take the document seriously. It was one of a list of items on my clipboard, the least important, and one that took up attention from more important things (which I will list for you eventually, but can be summed up with this video from Bessie Smith) :

Here is a salient excerpt from the Pennsylvania Living Will form, which is a lot simpler to fill out than you might expect:

I direct that my health care providers and others involved in my care provide, withhold, or withdraw treatment in accordance with my directions below:

  1. If I have an incurable and irreversible (terminal) condition that will result in my death within a relatively short time, I direct that:
    • I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials
    • I not be artificially administered food and water, realizing this may hasten my death. ______ my initials
    • I not be provided any comfort, care and relief from pain, including any pain reduction medication, if the effect would be to prolong my life. ______ my initials 
  1. If I am diagnosed as being in an irreversible coma and, to a reasonable degree of medical certainty, I will not regain consciousness, I direct that:
    • I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials
    • I not be artificially administered food and water, realizing this may hasten my death. ______ my initials
    • I not be provided any comfort, care and relief from pain , including any pain reduction medication, if the effect would be to prolong my life. ______ my initials 
  1. If I am diagnosed as being in a persistent vegetative state and, to a reasonable degree of medical certainty, I will not regain consciousness, I direct that:
    • I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials
    • I not be artificially administered food and water, realizing this may hasten my death. ______ my initials
    • I not be provided any comfort, care and relief from pain, including any pain reduction medication, if the effect would be to prolong my life. ______ my initials 

Regarding item 1, I answered: “I be removed from any artificial life support or any additional life-prolonging treatment“

Item 2, I answered: “I not be artificially administered food and water, realizing this may hasten my death.”

Item 3. I answered: “I be removed from any artificial life support or any additional life-prolonging treatment.”

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Time for another video:

http://youtu.be/SoJkxNa6v14

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The PA Living Will form states what I told the form I wanted. Period. See:

“My agent’s powers include, but are not limited to:

“Full power to consent, refuse consent, or withdraw consent to all medical, surgical, hospital and related health care treatments and procedures on my behalf, according to my wishes as stated in this document…”

Other language makes clear: My Agent has no choice but to pull the plug because that is my wish as stated in this document.

The fact that none of my would be agents realized that they had no power at all to effect my major decisions was of no concern to them. What was of concern to them was my welfare. They love me. They want what is best for me. Instead, I had to spend time explaining this expletive deleted stuff to them and the more I explained the more frightened  they became until, naturally, a discussion began about my funeral. [I do not want a funeral; I want a Democrat elected governor of Pennsylvania next year.]

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Perhaps a photograph unrelated to anything might prove useful here:

fish

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Naturally, the situation became complicated. Naturally, for me. Naturally, for the situation.

I was preparing for an operation in New York on August 8th. Why was I worrying about a durable power of attorney in Pennsylvania when the operation was happening in New York AND Memorial Sloan Kettering requested I provide a valid New York State form?

Not the same form, of course. That would be too easy. The New York State form is entitled, “A Health Care Proxy.” The proxy delegates someone to be my health care agent: “In the event I have been been determined to be incapable of providing informed consent for medical treatment and surgical diagnostic procedures.”

Enter a useful attorney whom we will call Hadley V. Baxendale, a moniker he likes. Hadley had three recommendations:

1. Since I live in Pennsylvania and have been hospitalized several times in this Commonwealth, a valid PA Living Will is a good idea.

2. The New York form is limited in stating explicitly the powers an agent can have. Link the two documents for New York so the New York agent is required to follow the more detailed directives in the PA form–having the two notarized together which I did at the American Cancer Society’s Hope Lodge where I temporarily stayed before and after the surgery. I handed that two-in one document in on Surgery Day to someone entirely covered in white who said, “Thank you. I will put it in your folder.”

3. Hadley said, “There is room in the PA form for additional instructions. Let me begin by asking you the following questions.” I minded answering each question. The Aristotelian/Talmudic logic behind legal–especially good legal–thinking drives me crazy. So, I had to answer how much of a vegetable I was willing to be before I was willing to have someone pull the plug. What percentage of postoperative disability I was willing to take. And other tranquil questions designed to put me in the mood for surgery.

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Time for another song.

http://youtu.be/QwIYrx6Bqe0

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The upshot was that because they were actually present and available my younger daughter Amelia and my sister Sarah Schmerler were designated NY Health Care Agents for me.

Amelia first. Sarah if Amelia were unavailable.

Both spent my operation time weeping at the old Whitney Museum just before Renzo Piano creates his magic and builds a New Piano Whitney. I have seen a photograph of the two together waiting in front of a sign explaining Piano’s future vision, but can not find the photo. Alas.

This is unfortunate because I could then explain that while each were waiting with their iPhone ringers on in case a major medical decision was required in their capacity as my Agents, Dr. Russo figured out how to close the wound all by himself.

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One more song and then a conclusion (I hope). Brief (I hope).

http://youtu.be/uOQwdRMTKEk

 Certainly, having a Living Will is an excellent idea. It is not an excellent idea when you are going into the hospital and have an excellent chance of survival. Then, having intense discussions about your wishes if you are incapacitated beyond redemption takes on an unfortunate side trip past where you want to be and what you want to talk about with your loved ones.

Here is a photo of my sister Sarah getting in shape to be my alternate Health Proxy. Did the enormous time involved in, for example, notarizing the Pennsylvania document in PA and two days later notarizing the New York document (with notarized PA) document attached and also notarized–gathering two witnesses each time. My appreciation to my Rep. in the Pennsylvania House Scott Conklin for making his office available for that purpose. [The Democrats could win the governorship with the right team. Conklin ran for lieutenant governor in the last election and lost. I hoping that he will run as a running mate with Allyson Schwartz and win.] {Whoops. I got off subject.}

A non-partisan thanks to Lorrainne Katt, Manager of the American Cancer Society’s Hope Lodge where I lived with Amelia, my daughter, as my caregiver. Lorraine in short order assembled a notary, another witness and signed the document herself.

sarahclimbs

This is Amelia several months ago drinking happily in Spain.

Ameliadrinks

Amelia arrived in New York on Monday evening in time for the rules instruction at Hope Lodge where she took up residence as my health care provider that evening. The next day we…The following day, a meeting with Dr. Paul Russo, my surgeon, a wonderful physical therapist, and an intense examination to make sure I would not die under the knife–intense.

Then…Thursday brought the surgery. Would never have discussing all the paperwork have helped me through time that followed the operation. Absolutely.

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Another unrelated photo courtesy of the Morgan Library and Museum:

Mozart

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A man’s gotta do what a man’s got to do.

I am thinking of me in this role. Filling out a Living Will is certainly a grown up thing to do. It is not a good idea to leave family and loved ones guessing about one’s intentions. The best way to do it is when there are no health issues involved. At nearly 66 years old, I should have been grown up enough to fill out the farm during a pacific time when asking family and loved members their thoughts did not bring out the intense emotion this exercise did.

Perhaps, the lesson of the angst of the Living Will taught me how to be a grown up. Perhaps.

–Joel Solkoff

Copyright © 2013 by Joel Solkoff. All rights reserved.

Before Arlo Guthrie sings all the words to Alice’s Restaurant, I would like to thank Law Depot www.lawdepot.com This online service provides forms that fit the requirements of the PA Living Will form and NY’s Health Care Agent form. Each can be easily modified or modified only to include names and addresses. A great service.

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http://youtu.be/b8DtpdXZi0M

Driving to surgery

THE GOAL. Surgery at Memorial Sloan Kettering Hospital where I probably will be cured of kidney cancer on Thursday, August 8th first thing in the morning.

The Hospital is located at 125 York Avenue, New York, New York 10065.

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[Readers: Start at the bottom and work your way up to here as I shall riding (not driving this trip to the Big Apple) in a car carrying one rear wheel drive scooter, one travel scooter thin enough to get to the bathroom in the hospital, one 12 pound wheel chair (just in case I want to go on my own power), knee pads (same reason), clothes, books and this and that for nearly 3 weeks while I go to New York to prepare for major surgery, have the surgery, recover and return to State College without a cancerous tumor. Meanwhile, of course, I will be seeing my daughters Joanna and Amelia and writing about the Morgan Museum and Library and Renzo Piano–for diversion with a purpose.]

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Waiting room for extensive imagry, Me orial Sloan Cancer Center, NYC

 

 

 

 

 

 

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Bathroom I shared with my hospital room mate. My first room mate died in the bed next to me.
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The route concludes: While taking exit 2 for Harlem River Dr toward FDR Dr/Manhattan…
 Keep left at the fork, follow signs for FDR Drive/Harlem River Drive and merge onto Harlem River Dr
 3.5 mi
Continue onto FDR Drive
 3.1 mi
Take exit 12 for E 63 St toward Roosevelt Island/New York/Queensboro Bridge
 0.1 mi

Turn right onto York Ave

 Destination on the left 
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maproute

THE ROUTE :Starts from A,  The Corner Room Restaurant, State College, PA  to B Memorial Sloan Kettering Hospital in New York City.

Continuation from directions below: From the entrance to I-91 in PA:

Merge onto I-99 N
 10.1 mi
Continue onto PA-26 N/US-220 N
 0.4 mi

Turn left to merge onto I-80 E/US-220 N toward Williamsport

 Continue to follow I-80 E
 Entering New Jersey
 213 mi
Keep left to continue on Interstate 80 Express E
 6.0 mi
Merge onto Interstate 95 Express N
 2.6 mi

Continue onto Interstate 95 Upper Level N

 Partial toll road
 Entering New York
 2.4 mi
Take exit 2 for Harlem River Dr toward FDR Dr/Manhattan
 0.1 mi
For concluding directions see above.

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StateCollegeWinter

STARTING POINT. The heart of DOWNTOWN State College, at the corner of College and Allen Avenues. Yes, I know an August drive does not involve snow (yet). The car leaves from the Corner Room Restaurant directly ahead in this photograph.

100 W College Ave
State College, PA 16801

.

The drive is 246 miles;  3 hours,  54 minutes. [Thank you Google Maps.]

Head southwest on W College Ave toward S Fraser St
 0.2 mi
Turn right onto N Atherton St
 0.5 mi
Turn right onto W Park Ave
 2.3 mi

Continue onto Park Ave/Park Ave Exd

 Continue to follow Park Ave
 0.8 mi
Take the ramp onto I-99 N [continued above].
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Joel Solkoff

Copyright © 2013 by Joel Solkoff. All rights reserved.

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Contribution opportunity to help defray the costs of going to New York, recovering there, and returning home:

russo-paul

The surgery will be performed by an expert in the field of kidney surgery which my physician here in State College) advises me cannot be reliably perfumed in the greater region where I live. My State College urologist referred me to Sloan Kettering in New York where Dr. Paul Russo will perform the surgery.

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 https://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.]

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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. https://joelsolkoff.com/who-i-used-to-be/

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

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

4. https://joelsolkoff.com/my-man-mozart/