As part of my therapy for prostate cancer through UCLA Health I am fortunate to have the benefit of both a psychotherapist and a psychiatrist provided through the UCLA Simms-Mann Center for Integrative Oncology. In addition, I currently participate in two excellent cancer support groups also offered through Simms-Mann Center. All of these psychosocial and psychological supports are conveniently provided remotely via ZOOM. In the era of COVID-19 and working remotely ZOOM has become the de facto standard for virtual face to face communication. I have a very nice ZOOM setup at home with a 1080-P camera and excellent lighting allowing me to present myself in a way that makes me look and sound better and stronger than I actually am. At age 81 I still have my hair. My brain still works 100%, give or take. My speech is clear and purposeful. Looking at a video of my ZOOM sessions would lead most viewers to believe that I am a normal, healthy senior.
I’ve had some discussion recently with my psychotherapist about my concern for the deleterious effects the hormone treatment I am undergoing for prostate cancer is having on my body. Besides the substantial impairment to my libido and sexual function, my entire musculoskeletal system seems to be undergoing an assault from within, a gradual but very noticeable decline towards frailty, feebleness and eventual loss of ability to even care for myself adequately. I have very pronounced fatigue and weakness in my extremities that is limiting my mobility. This is over and above the mobility challenges I already face due to being a lifelong above-knee amputee who needs either a prosthesis or crutches to get around. And since my right knee has had to carry 100% of the dynamic load and 50% of the static load of both the right and left (prosthetic) side of my body for the past 70 years, it is now completely shot. According to my doctor it needs replacing. Problem is bad orthopedic surgery is what caused my left knee to be missing in the first place, so I am not eager to take the chance that the right one will be OK after knee replacement surgery. Obviously physical therapy and exercise alone cannot possibly do anything to alleviate the severe pain and discomfort I must endure from simply standing in place for greater than about 15 minutes.
Besides osteo-arthritis which is fairly common in my age group, I also suffer from ‘low vision’ in the form of age related macular degeneration (AMD) which has become steadily worse over time. Because I have only one good eye remaining, my stereoscopic view of the world is significantly impaired. I have a hard time seeing the ground where I am walking, at least in 3D, causing me to lose my balance and either fall down or become frozen with fear of falling. I am safe walking at home mainly due to being able to grab onto walls, doors, stair railings, countertops or whatever or whoever is available. And of course in my own home my brain knows where everything is, what I can reliably grab onto to steady and support myself.
When I am out ‘in the wild’ it is a different story. Simply traversing a sidewalk curb or low barrier unassisted is nearly impossible for me now. I can still go places unattended as long as I am on crutches, and provided there are ADA ramps for access.
Now we’re getting to the problem I intended to write about in the first place. My psychotherapist, a young woman probably no older than her early thirties, is obviously very strong and physically active like I was myself at her age. She is aware of the issues I’ve presented including the fact that my oncologist has prescribed physical therapy for the de-conditioning that is being caused by the hormone therapy which removes testosterone and suppresses androgens normally needed for strength and musculature in males. At our last session my therapist made me promise to call my oncologist and get a new referral for physical therapy from a provider that I told her my wife had gone to recently and who has a gym and training facility only a few miles from where we live. So I promised my therapist I would do that.
Besides the physical therapy place that I told my therapist about, I am also considering going to a local gym, hiring a personal trainer and conducting my own fitness program independently from a professional physical therapist. I even interviewed a personal trainer this morning, Hillary W. from Go Tribe Fitness. Physical therapy and strength training for a leg amputee must generally be done wearing a prosthesis. Treadmills, spin bike machines, rowing machines and the like typically cannot be used by a leg amputee not wearing a prosthesis.
And this brings up a discussion of my prosthesis itself. A modern A-K prosthesis such as mine is retained (held on to the body) by suction. My residual limb, comprising my upper thigh is pulled into the socket of my prosthesis with a donning sock pulled through a threaded hole at the bottom of the socket which then attaches to a one way air valve forming a vacuum seal so the prosthesis stays attached to my body absent any supporting straps or belts. This design works great for ordinary day to day activity but is not so great for hard exercise that tends to break the vacuum seal and cause the prosthesis to loosen and become insecure. In that case, e.g., going to P.T. or to the gym, a special retention sleeve must additionally be worn, placed around my prosthetic socket and attached around the waist by velcro straps. And finally the socket brim of my prosthesis, though made of softer polyethylene material, nevertheless tends to cause all kinds of hurt and skin irritation between my torso and thigh near my groin. This happens whether I am active or just sitting. For this reason I’ve gotten to the point where I don’t even wear a prosthesis much of the time. But seeing and talking via ZOOM, as I do with my therapist, none of this is very apparent. And so at my recent support group I broke down crying, trying to describe my frustration about my inability to meet my therapist’s and my own expectations about what I can and should be doing in response to the fact that my body is turning to shit due to this stupid hormone therapy ganging up on a wretched physical body already in tatters from both disability and old age.
One of the reasons I have always managed to be fairly successful in life up until now is due in part to my having had to overcome the never ending challenges of being an A-K leg amputee since age 10. It is also because I have this little elf riding on my shoulder who harps at me constantly, ‘Suck it up Buttercup!’ Lately the little elf is also saying ‘Get off your ass and do something physical! Like you used to do. Otherwise your body is going to end up permanently cemented to your chair like those old people you read about in the news who’ve been sitting in one place for so long they must be hauled away on a furniture dolly, Lazy Boy and person, inseparable in death as they were in life. Is that what you want?’
And now I’m finally talking back to him, ‘Dude, give me some space! Take a number! If I feel like doing that I will. But right now I just don’t feel like it. Right now hospice care and having a hospice ‘kit’ by my bedside sounds like a better option than all this pain of movement, pain of standing still, pain of having to wear a prosthesis that no longer supports and is no longer really compatible with the quality of life I once enjoyed. And if I end up glued to my chair with decubitus that’s mostly OK too because my wife says my chair is old and squeaky and the tilt mechanism is worn out and unsafe and that it needs to be donated to the Battered Women’s shelter. So do check out the Coalition for Family Harmony Thrift Shop at 270 Main St. Ventura, CA 93001. There you will find a nice, black leather executive chair and me! All for twenty bucks!
6 thoughts on “Suck it up Buttercup!”
SEE YOU HAVE NOT LOST YOUR SENSE OF HUMOR. HANG IN THERE……..LOVE YOU. SUSAN T.
Thank you Susan! I’m so glad you can appreciate my ‘dark’ humor. Its therapeutic for me to joke about this stuff sometimes. And we hope you are having a Merry Christmas and wonderful holiday season there in Omaha. Karen and I think about you a lot. You are so special to both of us!!
Peace and love,
Update on my physical therapy situation-
I spoke today with Tim Everitt, the P.T. who helped my wife through JMP Physical Therapy and Personal Fitness in Agoura Hills. He said, based on my situation, regular P.T. would not be advisable. Instead he referred me to the Los Robles Rehab Hospital in Westlake Village. I’m going to wait to schedule this until Jan 23 when I next see my oncologist
Steve, I love your courage and your fortitude. Your message is one of inspiration and a lesson in how to think about adversity.
Hey Steve: so sorry about the intractable pain! Even though orthopedic surgery has advanced in the 70 years since your botched procedure (a 10 year-old, I can’t even imagine), knee replacements are tricky, especially if there are co-morbidities, of which you have an abundance, seems like. Full head of hair, though.
Thank you MIchael – As long as I can throw Vicodin at it, my phantom pains are more or less manageable. And thank you for all the care and support you and other members of Circle of Reflection are providing me. After Tuesday’s session and my ‘overreaction’ to some of the comments made, I actually feel much closer to this group than ever before. Hope to see you all next Tuesday!