Tag Archives: American Cancer Society Hope Lodge

How do I feel?

I do not feel real. There is a disconnect between my body, which does not feel good, and my mind, which does not feel good.

It is six in the morning. I am listening to Chopin’s Nocturnes; I am beginning to be not unhappy, but capable of realizing happiness will come.

My body feels as if it were hit by a Mack Truck—a brand new red truck exactly like the one friend Philip Moery and I saw just as it was driving off the assembly line lot–packing tons of raw power, initially a frightful yet beautiful sight.

All right, maybe the truck that hit me wasn’t red, but it still hurts.

Everything hurts.

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Amelia_Russo Office

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The fact that everything hurts is mitigated by the fact that I am no longer in excruciating pain the way I was two weeks ago.

The pills helped but not enough.

I took more pills and they did not help enough.

The pills caused my gastrointestinal system to go on strike—descriptions I will spare you.

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Yes, I realized my life had been saved as a consequence of the successful operation that not-so-appreciatively was making me wonder at my sanity to willingly submit to the aftermath of this surgery. Grappling two contradictory thoughts in my medicated head: The first was: I am glad to be alive. The second: I wish I were dead.

The glad to be alive prevailed throughout but sometimes only by a hair.

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Now, I am back at State College PA where I live. When I was in New York thinking about State College, I was in dread. The number of procedures required to get from there to here seemed overwhelming. Who, I wondered, was going to take apart my rear wheel drive scooter, my travel scooter, and my wheelchair and put them in the car?

At every step [sic] of the way, there were how-to-get-home questions ultimately only I could answer.

Dewy-eyed optimists might say that my problem solving was commendable because it was helping me reach my goal of saving my life.

Devastated, late in August, the problem-solving took on a distinctly unhappy feel. The problems had to be solved. I did not want to solve them. I had no choice.

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Upon arriving at State College, I was so relieved to be home. I had worried that everything with be dirty and a mess (on target), but it did not matter.

I no longer needed to receive permission to go to the bathroom and follow the American Cancer Society’s Hope Lodge rules requiring that I not bring my coffee from the common kitchen to my room.

Now, I can drink coffee as I type this and go to the bathroom without the nurse’s saying, “No.” No nurse. No No. Alone at last.

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Who am I alone? I am a 65 year old paraplegic (an active paraplegic) recovering from major surgery. It will take me two weeks more to recover to the point where I feel alive, an explication I will reserve.

I do not want to see other people. Slowly, I am emerging from this hermitage—going across the street for a quick Mediterranean plate with extra baba ganoush, inviting my friends to see me one-on-one and for a limited time only.

My body is not working well but is getting better. The key barometer to my well-being is the ability to transfer. Before surgery, I leapt out of bed and onto the wheelchair effortlessly.

Now, getting to the wheel chair is harder.

I do not fall.

I am weak.

While I am getting stronger, I really do not want to be outside home much until I master this key factor in being able to take care of myself, viz. transferring as effortlessly as before August 8.

It is happening.

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In some ways, I am surprisingly patient with myself.

Take for instance transferring from bed to wheelchair.

I methodically bend down and double check the wheelchair is locked in place.

When I put my left foot on the floor, preparing to swivel into the wheelchair seat, I check and double-check every move.

The consequences of falling; indeed, of falling frequently, is straight to the nursing home—the county home called Centre Crest; I do NOT want to go there.

Part of me is mindful of consequences.

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Before I discuss my emotions, which is the primary cause of my writing this posting:

The rank of football-rally-style cancer optimists is distressingly high.

Two apartment buildings where cancer patients recover or die are named Hope Lodge and Miracle House. I would prefer to have my conversations about hope and miracles with God and not  rely on some seemingly uplifting name to keep my spirits up.

This may be one of many unfair observations, which I will not spare you now or later.

Hope Lodge is run by the American Cancer Society and through its generosity provided my caregiver younger daughter Amelia had a place to stay when I was in the hospital and where she could be next to me when I returned to recover.

Hope confronting me everywhere….

One consequence of cancer survivor ebullience is the: Make every day count mantra.

The first every day I was somewhat functional upon my return, I had to fill out overdue forms–lots of forms from trying to obtain money to ensuring my continued employment.

Forms. Forms. Form

Every day I filled out forms I asked myself, not entirely ironically, whether I had survived cancer to fill out forms.

Yes, I realize that after I fill out enough forms, I can scoot to the florist on Allen Street and smell the yellow roses.

Inhale.

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I wrote a book about the importance of emotions while surviving cancerhttp://www.joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/

I know something about the subject.

This time, I prepared to protect myself emotionally and to provide my caregiver(s) with relief, orchestrating pleasant things to do.

Elsewhere, I may detail the preparations. Right now, trust me. I worked long and hard on emotional preparation.

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The big surprise to me is that I went crazy after the operation rather than before.

The craziness took the form my issuing barking mean and aggressive orders at my two caregivers, my daughter Amelia and my sister Sarah. I was polite to strangers.

The craziness reminded me of the time 20 years ago at the advice of the Chair of the Oncology and Chair of the Neurology Departments at the Chapel Hill Hospital for the University of North Carolina.

United in their decision both Chairs decided to put me on high doses of steroids to see whether they might restore my ability to walk. They did not think it would work and said so. However, steroids were the “miracle drug of the 1950s” and sometimes steroids have unanticipated positive consequences, so: “Why not? We have nothing to lose?”

Except my mind. I found myself saying terrible and abusive things—words I did not mean and knew I did not mean even before they formed on my lips, but words I was powerless not to utter because THE DRUG MADE ME DO IT.

Last week, I asked a secretary at the Department of Architectural Engineering whether she had a similar experience. “Yes, when my kids were born. I said awful things to my husband. Awful awful things.”

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Sarah_close

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The craziness appeared in the middle of the night as I was lying in my hospital bed, coughed, and my body felt as if it were split in two.

The craziness appeared as a wave—a fluctuating wave increasing in intensity until it reached a high and unpleasant peak before returning me two days later to reality shaken, not quite mindful of what I had said except that it was THE WRONG THING TO SAY.

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My sister Sarah told me on the phone on Thursday her feelings about me when I was crazy. “I knew that you were suffering. Yet you were mean and impossible to be around. I decided I never wanted to see you anytime again soon. If I saw you at your funeral, it would be too soon.”

Daughter Amelia asked: “Why were you so mean to me?”

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The expression I am in the dog house comes to mind.

  • I was crazy.
  • I was out of my mind.
  • I did not realize what I was saying when I said it and I did not mean what I said.
  • I had been through extraordinary pressure.
  • I went out of my mind.

My mind has returned.

Forgive me.

I am the brother and father you love.

Remember me?

FrankSinatra

–Joel Solkoff

Copyright © 2013 by Joel Solkoff. All rights reserved.

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.

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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:

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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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