Spyros L. on December 21, 2019
I was Diagnosed with:
Currently I am in "consolidation stage" where the medical staff goes after what is left of my brain cancer after remission.
Type and Description of Treatments:
I have primary CNS (Central Nervous System) lymphoma. My initial treatment started in July 2017. It was an operation for the left side of my brain. I had slowly lost short term memory through the prior months. As my work contract ended early in 2017, I was told by friends and co-workers that my conversation and project emails were unclear and confusing. Unfortunately (typical male ego), I did not take them seriously. Once the assignment was over, and I was home, my problems finally hit me. My wife, Sally, works at home. Being home together, she was able to recognize and drive home by problems. (I often could not remember by kids' names!!). In July 2017 I went to Yale Hospital, and received treatment for my lymphoma. My left side of my brain was completely white, and the lymphoma was heading to the right side of my brain. I was told to stop working, but went back to work anyway as soon as I could. Memory loss came back, along with dizziness, around Sept. 2019 and I finally returned to Yale on 9/12. I was in Yale over 30 days as they found some separate issues related to my health from earlier days, such as heart attacks (diagnosed and cured years ago), blood clot, and sports bruising. I stayed in bed for those days receiving mostly intravenous treatment through both arms. Eventually, I was allowed to go home on 11/20.
How do you feel today?
These days I am feeling better. I am finally able to read again - novels, history, etc. I am very appreciative. I am also back home with Sally - more than appreciative.
Since the diagnosis, what has changed in your life?
I have a long way to go relative to strength and movement. I am very weak, and even a few minutes of very light exercise or home activities exhaust me. I hope to keep trying a little at a time. I also miss working terribly - both for money and being productive. Obviously, my gym days are over.
What is going well for you right now?
As I mentioned, I am able to read and understand pretty well. I admire and enjoy various novels and history, etc. Also, little by little I am getting back into house choirs - washing clothes, doing dishes, some cleaning, etc. Who would have thought I would get some positive feelings doing those things.
What is not going well for you right now?
Physically I am very weak - very weak. Understandable given 6 rounds of chemo, and staying in bed for 30+ days. I hopefully will keep trying to get stronger and return to some physical strength - even walking again would be terrific. Driving is an issue, and I am not sure where that is heading.
What has been the most challenging thing about having cancer?
My weakness - being unable to do much physically. I am basically home all day - ugh. I miss work.
When difficulties overwhelm you, where do you go for support?
I have Sally with me. But I have stopped talking to most of my friends. I check in with my kids. My kids come to visit me each weekend. I am very fortunate they are with me.
How have your long-term goals or life goals changed since diagnosis?
My goal to keep working into my 70's is clearly in jeopardy. Finances for my children will take a hit. Time spent with Sally, once she retires, on trips and vacations are in jeopardy.
What is your work arrangement right now? What are your hours?
I am not working. I am hoping to get back to work - possible part time, work at home. I need to start investigating those options and learn more about them.
Since the diagnosis, what has changed in your work life?
I am hoping to get back to work someday, even if not my past professional or full time environment.
What advice do you have for others trying to work through treatment?
Trust the medical staff. Hang onto your family and friends as best as possible. Stay hopeful and positive as best as you can. Try to focus on the future. Eat well, rest, try to stay as calm as possible. (Easy to say, hard to do.)
How have you dealt with any side effects of treatment?
As best as I can I guess - try not to get too anxious and rest, (naps) when necessary. Alas - this is my life now,
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
Go to a doctor earlier than I did - don't wait. If your health does not seem right or normal - find any issues as quickly as possible.