On Friday, December 4th, Dr. Christopher J. Winfree inserted a test stimulator in my spine at the operating room at Columbia Medical Center in New York City. This is a photograph of the controls to increase the intensity of vibrations to my spine. For the past 14 months I have experienced crippling pain. Here in State College PA where I live, Dr. Todd B. Cousins, widely regarded as the best pain specialist in this area, recommended that I go to New York for this surgery. ++++
Regarding the bad news/good news construction which began this posting:
The good news is:
- After a difficult trip to New York City to begin the process of controlling crippling pain
- After weeks of hiding from family and friends (refusing to answer the phone, read emails, and post on Facebook)
- I have emerged (still afraid of being evicted from my apartment and other economic catastrophes)
- To report on my progress
- Ask for help
- Provide an optimistic view not only of my future but that of millions of Americans who have survived cancer
[Not only did medical achievement result in my not dying of Hodgkin’s disease–cancer of the lymphatic system–but I was able to father two daughters. Indeed, in April, God willing] I will be a grandfather.
One of the consequences of radiation treatment that saved my life from cancer is that radiation damage has caused my spine to degenerate to the point where my daily pain level averages 7.5.
Another common pain measurement chart includes faces allowing patients to relate feelings with numbers.
Karen Lee Richards, pain patient writing for healthcentral.com does an effective job of describing the different levels of pain. Since my average daily level is 7.5, there are moments of intensity when the pain level goes off the chart. In one instance, I made the foolish decision to go to the emergency room–not a good place to be when screaming in pain.
THE PAIN SCALE
0 – Pain free.
Mild Pain – Nagging, annoying, but doesn’t really interfere with daily living activities.
1 – Pain is very mild, barely noticeable. Most of the time you don’t think about it.
2 – Minor pain. Annoying and may have occasional stronger twinges.
3 – Pain is noticeable and distracting, however, you can get used to it and adapt.
Moderate Pain – Interferes significantly with daily living activities.
4 – Moderate pain. If you are deeply involved in an activity, it can be ignored for a period of time, but is still distracting.
5 – Moderately strong pain. It can’t be ignored for more than a few minutes, but with effort you still can manage to work or participate in some social activities.
6 – Moderately strong pain that interferes with normal daily activities. Difficulty concentrating.
Severe Pain – Disabling; unable to perform daily living activities.
7 – Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships. Interferes with sleep.
8 – Intense pain. Physical activity is severely limited. Conversing requires great effort.
9 – Excruciating pain. Unable to converse. Crying out and/or moaning uncontrollably.
10 – Unspeakable pain. Bedridden and possibly delirious. Very few people will ever experience this level of pain.
My objective is not to eliminate pain. My objective is to combine the spinal stimulator with vigorous daily activity making extensive use of physical and occupational therapists. The combination will allow me to lower my daily level to 4.5 which is manageable.
However, there are many obstacles to overcome to reach that objective. These obstacles include the American Cancer Society’s insensitivity to cancer survivors. It is time now to push the publication button before returning to this site for further clarification.
The ACS is certainly to be commended for this report it published on the number and special requirements of cancer survivors. What is now required is an understanding of the human and indeed economic productivity costs of failing to heed the significance of ACS’s own report.
“A first-ever report by the American Cancer Society – in collaboration with the National Cancer Institute – estimates there are 13.7 million cancer survivors alive in the US today, and that number will grow to almost 18 million by 2022.….
“The report was created to help draw attention to the growing number of cancer survivors in the US who have specific medical, psychological, and social needs. It also aims to raise awareness of resources that can assist patients, caregivers, and health care providers in navigating treatment and recovery from cancer.”
Specifically, my concern is the American Cancer Society’s refusal to open the doors of its Hope Lodge housing to cancer survivors. Three years ago, when I received surgery at Memorial Sloan Kettering Cancer Center, the ACS provided me with accommodations in short supply in NYC; namely, bedrooms with bathrooms where, as a paraplegic, I could get my scooter into and where it was possible for me to take a shower.
However, since I was not receiving chemotherapy, radiation therapy, and surgery I was denied entrance to the American Cancer Society facility. As a cancer survivor trying to improve the quality of my life from problems caused by cancer treatment, I was turned away.
Therefore, on visits to New York City’s Memorial Sloan Kettering Cancer Center with oncologists, the ACS turned me away. When ACS oncologists recommended that I receive treatment from Dr. Winfree for the cancer-caused pain, I was turned away again and found myself unable to get into the bathroom without crawling and facing the indignity of being unable to shower for weeks. The following raw footage reflects my sense that something must be done to stop punishing cancer patients for living.
Finally, at least for today, I will end with an email I received from an architecture friend in China who with her 12 year-old daugter celebrated Thanksgiving with me last year in State College:
I was delighted to hear from you.Yesterday did not seem like Thanksgiving with you and Kelly. Last year, Kelly and her friends played on the drum set. The neighborhood is still resounding at the sound.
Here is an explanation on my current situation. http://www.joelsolkoff.com/in-
I am in New York City now. I am in the apartment of a friend of my mother’s rabbi. My entire world here in the apartment is astonishingly primitive. My scooter–a poorly designed travel scooter–is too wide for the bathroom door. To go to the bathroom I must crawl.
Three things comfort me. 1. I will redesign travel scooters, 2. I will redesign communities so the entrance to each bathroom will be wheel chair accessible. 3. I meet the surgeon who will begin the process of drastically reducing my pain.
I have started giving seminars. Chimay suggested I lecture on proper English usage and Zotero. I will continue the seminar series after I return from New York.
It has been nearly 32 years since I last was in China. I miss China. Also, of course, I miss you and Kelly.
Note: I profiled Jane, the English name Ming Zhao prefers to use, in my column for e-architect, U.K. http://www.e-architect.co.uk/columns/belt-and-suspenders-routine