Gilda Radner: It’s Always Something

Gilda Radner died of ovarian cancer. It is pernicious and aggressive, not curable or even treatable. She spent most of her last 30 months in hospitals, getting or recovering from chemotherapy. There were bright times, a good Christmas, her husband Gene Wilder, a coterie of friends, group support meetings at a Wellness Center for cancer patients, and an experiment with macrobiotic foods that allowed her to feel great for a couple of months. Her narrative is open, honest, frank, and (as much as possible) humorous. 

Most interesting to me was the constancy of cancer and its treatments. In our local support group for multiple myeloma, we all tend to speak of neuropathy as if it were new, special to our cases, and identified with Revlamid, Velcade, or Darzalex. And we all complain about the pain and the effects and side-effects of the painkillers that sometimes do not work at all. And it is personal. However, Gilda Radner’s story is 35 years old. She went through all of those symptoms and all of the others. I have a lot more perspective and context now. 

Although a new, revised 20^th anniversary edition
was released in 2009, I read the first edition.

"...featuring a newly updated resource guide 

for people living with cancer 

and a tribute by Radner’s former colleagues 

at Saturday Night Live."

Publisher: Simon & Schuster (May 19, 2009)

Length: 304 pages

ISBN13: 9781439148860

 “Chapter 11. What’s Funny About It” Easy answer: not much. Her caregivers in the hospital did go along with her sense of humor, her need to find humor. With Gene Wilder’s help, they videotaped one session and while she was unconscious, they hung cards of monologue over her head. Nothing in the chapter or the book is laugh-out-loud funny. Even so, Radner’s tragicomic sense of life and her feeling for irony were easy to understand and accept. I found reflection in her story. 

 

PREVIOUSLY ON NECESSARY FACTS

How Do You Make God Laugh? 

Stem Cell Collection 

Mortality 

Invictus 

The Little Black Bag: Medical Care as a Faustian Bargain 

Stem Cell Collection

In preparation for autologous blood stem cell transplant after 2024, I had my red blood stem cells harvested. The procedure was successful and that is the bottom line. That final tally was the result of very many debits and credits. Even though we had this planned months ago, when I was wheeled from the transplant clinic to the main hospital to be taken to radiology for the placement of a catheter, the main desk asked if I was a walk-in. It took them a couple of hours to find a file folder with papers that then were entered into a computer file. That was just one event.

 

I went to the Sarah Cannon Clinic at Methodist Hospital in San Antonio about 68 miles from home because the Sarah Cannon Clinic at St. David’s Hospital in Austin about 18 miles away will not harvest and store. At Methodist they were proud to tell me that they store stem cells for the other clinic. I do not know why that treatment was denied to me in Austin but it was. “We do not harvest and store. If we harvest, we use them.” So, we scheduled treatment down the road. 

 

I met Methodist Hospital last year, after my initial diagnosis because the arithmetic of chance favors the second opinion. I have been happy to be treated here in Kyle because the office of Texas Oncology here is a short walk through a city park. It is very convenient. Even so, the second opinion has been helpful. (See “The Monty Hall Problem” on Wikipedia and elsewhere.) It validated the treatment regimens and provided additional insights. So, I have been back half a dozen times for lab tests and consultations. 

All along, I have taken as much charge of my treatment as I have bandwidth for. I bought textbooks and a microscope just for orientation because I never paid much attention to life sciences. I got a book from the UT library on oncology nursing just to read twenty pages on myeloma and Revlamid® (lenalidomide). You really have to ask the right questions to get any answer and many doctors control the flow of information according to their own standards. My primary oncologist assured me that this will not require chemotherapy and we will do it with monoclonal antibodies. He sounded like Dr. McCoy. Well, it is chemotherapy; I just don’t lose my hair (yet). And right now the FDA approves monoclonal antibodies only when two other courses have failed. So, OK, I got over that last year.

 

This time, the sugar coating was on the collection catheter, a Quinton line. I should have looked it up. “Oh, we’re just going to put a tube in your neck to collect blood...” In my neck, indeed, it went into my jugular and down to my superior vena cava. That much was fine, after all. It took two imaging systems (CT and fluoroscope) and an MD to place it. (I enjoyed listening to him cluck as he drove the twisty turny lane. I knew that he could do it.) “So,” I asked, “they can just take this out at the clinic?” Oh, yes, I was assured, after they remove it, they just hold the place shut for five minutes. Well, it was ten minutes and 30 minutes no talking lying flat to make sure that it is not bleeding out and I have dressings to wear for 72 hours and I cannot lift more than five pounds. All of which is going to impact my first day of work on a new job Monday. Who knew? 

All in all, there are worse outcomes. I am reminded of a comedian I saw on a late night show who told of a woman seated next to him on an airliner, on a telephone, telling her friend about having “the worst day of my life” while reclining in a cushioned couch at 38,000 feet, traveling 80% the speed of sound. 

 

My daughter reminded me of Adm. William H. McRaven’s parable of the sugar cookie. (See "Make Your Bed.") Other people tell it differently but for McRaven the point was that being chosen to be hosed down and rolled in the sand and spending the rest of the day covered like a sugar cookie has nothing to do with any choice you made. You could not have seen it coming and you could not have avoided it. It just happened to you. Sometimes, life is like that. So, get over it.

 

And on the assets side, every one of the nurses and assistants who were my direct caregivers were capable, informative, engaging, and supportive. I enjoyed talking to all of them. Not only do I like talking about myself but I am pretty good at interviewing and I ask a lot of questions. One of my radiologists was injured in college sports and went back for a second degree. One of the consulting oncologists was a Navy doctor. I had at least a dozen great interactions over the past three months.  

  

I have been told that there are many ways to view multiple myeloma. “This is not like breast cancer. You don’t have a lot of options here. This thing is just going to run its course.” On the other hand: “Think of it like diabetes: just something you have to manage for the rest of your life.” When I was diagnosed my initial research warned me that almost half of patients have an expected end-of-life of less than one year. It is also true that the other half, 52% or more, live ten years and more. The statistical tail on the right is getting longer. 

 

PREVIOUSLY ON NECESSARY FACTS

 

Microscopy (Again) 

A New Microscope 

How Do You Make God Laugh?

Epigenetics 

Disruptive Diagnostics and the Business of Science

 

The Little Black Bag: Medical Care as a Faustian Bargain

“Every doctor tells me something different,” I said.

The doctor replied, “That’s why we call them opinions.”

We benefited from a daylong conference about multiple myeloma hosted by the HealthTree Foundation of Lehi, Utah, and held at the Thompson Conference Center on the UT Austin  campus. Four oncologists presented guidelines, recommendations, and recent findings in both morning and afternoon sessions. At lunch, two of them joined us at our table. Overall, I am looking forward to a longer timeline in a better situational context. Most encouraging was that my new goal of ten years will likely include alternative options and improved treatments. In fact, for the oncologist one of the challenges is the long list of approved drugs already available. For the patient, each one comes with an array of annoying or debilitating side effects from diarrhea to blindness and coronary arrest. That being as it may, the conference started out with a strong positive statement about the ongoing research: “It is a story of hope.”

 

It is also important to consider whatever else might ail you. “Try to avoid the chronic health issues of a fulltime patient” such as diabetes and high blood pressure. That speaks to the sociology of oncology. Treatments are not so readily available for those lacking social capital. Of the fifty or so attendees, every one looked like us: middle class people with health insurance. Nonetheless, I am in a support group that meets (virtually) once a month and of the ten or twelve of us, we have ten or twelve different stories. My catchphrase is: “Predictions are statistical; outcomes are individual.”

 

When the Plague struck, I mixed every concoction I could think of and half of my patients died by my hand and the ones who survived called me their savior. -- Faust

 

Hier war die Arzeney, die Patienten starben,

Und niemand fragte: wer genas?

So haben wir, mit höllischen Latwergen,

In diesen Thälern, diesen Bergen,

Weit schlimmer als die Pest getobt.

Ich habe selbst den Gift an Tausende gegeben,

Sie welkten hin, ich muß erleben

Daß man die frechen Mörder lobt.

Faust, Erster Teil, Vor dem Thor.

 

This was our medicine; the patients died,

“Who were restored?” none cared to ask.

With our infernal mixture thus, ere long,

These hills and peaceful vales among,

We rag'd more fiercely than the pest;

Myself the deadly poison did to thousands give;

They pined away, I yet must live,

To hear the reckless murderers blest.

Faust, Part I. Before the City Gate.

Translated by Bayard Taylor 

 

Having moved 25 km south of Austin, I decided to find a cardiologist closer to home. The first one spent so little time with me–not 120 full seconds—that when I got down to my car, I stopped, turned around and went back in to insist on a consultation. I asked specifically about the side effects of oncology treatments and he was surprised. So, he set an appointment with another specialist. 

 

I told that specialist that I have no knowledge of my own anatomy. Speaking to each other at the same time, I asked if I have a mitral valve prolapse—“Do you have a mitral valve prolapse?”—or a bicuspid aorta—“Do you have a bicuspid aorta?”—and how does the murmur sound—“Do you have a murmer?” He stopped. “You are asking me while I am asking you.” 

Yes. I had an echo cardiogram the other day. Everyone listens to my heart. What can you tell me? 

“We will know more when you have a CT scan.”

 

On the way home, I remembered “The Little Black Bag” by Cyril M. Kornbluth. 

 

I forget things and that concerns me. So, I scheduled an Alzheimer’s assessment with a neurologist. I passed. She said that I have only (mild) age-related cognitive impairment. “It’s normal,” she said. “I don’t believe that it is normal,” I replied. “People like you never do,” she said. 

 

PREVIOUSLY ON NECESSARY FACTS

How Do You Make God Laugh? 

Welcome to the Future 

Bob Swanson and Genentech 

Misconduct in Science and Research