Back At It - Doctor's Appointments
A long time again, in July 2017 (wait…was it 2016? Oh geez, the years are blending into one big blob), nonetheless, a few years back I retired/went on disability. While was I doing my job well and managing my responsibilities, that was all I was doing.
My quality of life was terrible. Any energy I had was drained at work, meaning I had zero time for my life. Any free time I had went to doctor’s appointments, treatment, or sleep. My wife and I discussed, looked at the numbers and determined that stopping work was possible. And I can say that since retiring, I’ve felt 100% better physically.
Retirement leaves energy for volunteering
Soon after retiring, I started two volunteer activities. One was with the Leukemia and Lymphoma Society as a First Connection volunteer. The First Connection program is one of many things the LLS does to support blood cancer patients. It’s a peer-to-peer program that connects newly diagnosed patients with patients who have been managing the same disease for a while.
The other thing I did was not cancer related (a necessary thing given mentally I just can’t be myeloma 24/7): I volunteered at a marine mammal rescue facility. I’d help feed injured or sick seals, seal lions and other animals. I’d clean pools, wash towels, and scoop fish. It was so much fun and a lot of hard work.
A twinge in my back
One day scooping fish from a pool, I felt a twinge in my lower back. I straightened up, stretched and it felt fine. But the next day, I awoke with terrible lower back pain that radiated down my left leg. I went to a back specialist; we did some imaging, and I was sent to physical therapy. A few months of physical therapy helped. I couldn’t go back to scooping fish, but I could go back to most of my regular activities. This was in 2019.
My back is hurting again
Recently, my lower back started hurting again, with pain again going down my left leg. I did some stretching again and I seemed to be managing the issue, until last month when on a morning walk, I had a sharp jab of pain in my back that stopped me in my tracks. I limped home. The next day, my wife and I left on a road trip to a family wedding in northern California. Getting in and out of the car was excruciating. My primary oncologist sent a prescription for pain killers to a pharmacy near where we were staying.
Long story short, I returned to the orthopedist, did more imaging and this time he said I needed surgery. I have a degenerative disc and a nerve is being crushed. Forgive my non-technical description. Two things came to mind when he told me this.
Tired of never-ending medical appointments
First of all, I am absolutely tired of procedures and medical appointment. 11 years of treatment and surgeries and procedures have absolutely worn me down physically and mentally. I’m bleeping exhausted by it all. Honestly, I want my back fixed and I want it done now.
But just walking into any doctor’s office right now is traumatizing. Second of all, I need to see another back specialist. I was not thrilled by the bedside manner of the doctor I have been seeing.
I told the doctor -four times- about my myeloma
In a 20-minute meeting to review my imaging and options, I had to tell him 4 times about my myeloma. He is not a good listener. I’ve now been through this enough to know that if I’m not happy with a doctor I can change. We all need to be our own best advocate.
More doctors to meet
I now have three recommendations of doctors to see/interview. It stinks because it feels like starting from scratch. And it reminds me that despite my best efforts (see above) myeloma and my health are on my mind 24/7. But I need to get this fixed. Without being able to exercise and to stay fit, my mental state is going to take a further beating. (And don’t get me started on trying to find a therapist who truly understands the impact of 11 years of cancer treatment on one’s mental health).
It’s frustrating, I just went through this whole port removal saga, and now I might have go a whole other procedure again. I and we will get through it. I’ll feel better in the long run. But what is the long run, really?
Does your doctor listen to you?
Have you met another blood cancer patient?