Back At It - Doctor's Appointments

By Matt Goldman

3 min read

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?

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Paula Rosado Moderator
Hi <inline-mention username="Matt Goldman" user-id="3648536"/>! I can relate to what you have said. All of my energy spent at work during a decade in treatment had landed me in hot water, and, like you, had pushed the situation past my body's reservoirs. While I am still negotiating for my private disability pension I often remind myself of how much better I feel since I gave up working full time. Like you I have been able to spend time doing the things I love most (as well as my body will allow). There is always a caveat tho. Even with the extra time to spend taking care of ourselves there's a good reason we are on disability benefits. That's the part that is hardest to accept sometimes.
Dennis Golden Moderator
Since 2013 a dark cloud has followed me around and periodically dumps a variety of cancers, treatments, covid and more in my lap. All of this is just draining on so many levels. Retired or not making yet another MD appointment and sitting in a waiting room or treatment center for what often seems like hours on end is equally exhausting and frustrating. Add in MD's who do not listen and the tidal wave of frustration is impressive and daunting. Thanks to blood cancer and all of the many stresses of just living in today's chaotic world I suspect all of us are dealing with some form of post traumatic stress disorder (PTSD). Personally I have had enough and decided to take some positive steps to address it. To that end I am currently writing an article on how I have been dealing with it . Hopefully the information will be of help to folks here and elsewhere . In the meantimeI I offer the following --- a boat load of stress reduction can be achieved with meditation, yoga and remembering to focus on the small joys we experience each day vs the many negative distractions over which we have no control. God bless ... Dennis(Blood-Cancer.com TEAM)
Yolanda Brunson-Sarrabo Moderator & Contributor
I'm sorry Matt...if it's not one thing it's another! I hear you on constantly blurting your myeloma condition, as some doctors don't really know if side ailments relate or not to so many years of a myeloma diagnosis. Though we do our complete diligence explaining, frankly most are clueless and treat whatever new condition as a stand-alone, leaving an incomplete puzzle especially if that twinge of pain returns. Personally, it can be frustrating as to who wants to continue going to any of these doctors and hearing from some that have no idea and stick to their doctor's script of prescribing meds and not digging further as to why this is happening in the first place. Keep at advocating my friend!
Ann Harper Moderator & Contributor
Every morning I go to take a walk. I’m a totally different person when I’m done. I can’t imagine not being able to do this, so I’m sorry you can’t exercise right now. It does make a difference. I hope you get your back done quickly and can stop the pain you’re feeling. Let us know how you make out. Ann ( <a href='https://blood-cancer.com' target='_blank'>Blood-Cancer.com</a> Team member)