Matthew B. on April 26, 2018
I was Diagnosed with:
Anaplastic Large Cell Lymphoma, ALK negative
Social Security, Total and Permanent Disability
Type and Description of Treatments:
I recieved 6 rounds of CHOP+E chemotherapy from June 2016 to December 2016. At the end of January 2017 I recieved an Autologous Stem Cell Transplant.
How do you feel today?
Same as everyday. Very difficult to get going after waking up in the morning. It always feels like it takes until 5 in the afternoon before I feel fully awake. I try to exercise but the toll the stem cell transplant and other treatments have taken on me is profound. I used to be a marathon runner but the effort of running even 1 mile wears me out for days.
Since the diagnosis, what has changed in your life?
Little things that I would get upset about no longer worry me. I have had to leave my job in the medical field and have been declared totally and permanently disabled. So I am now a house husband. The cancer I had was mostly in my spine and hips so I have a hard time being on my feet for any great length of time.
What is going well for you right now?
We are getting caught up on the bills finally. We are trying to save enough money to take a vacation to someplace warm and sandy. I am in better spirits lately since I started seeing a therapist.
What is not going well for you right now?
My back where it meets my hips has been getting progressively sore again. I am not really motivated to do anything outside the house. I'm starting to have more frequent diarrhea. So with all that, I am going to need to see my PCP to check up on my health. My type of cancer has a high relapse rate and a 5 year survival of 40% or less. So that is constantly weighing on my mind.
What has been the most challenging thing about having cancer?
Changing from being a moderately built in shape runner to being overweight and very out of shape. MyHaving had to leave my job left me feeling without purpose. Being in the hospital for three weeks for the stem cell transplant was very hard. The medicine, Melphelan, that they gave me hurt my digestive tract so I was in great pain for many days.
The whole outlook of my life has changed and I have yet to fully digest it mentally.
When difficulties overwhelm you, where do you go for support?
I have been having a hard time expressing my needs to my wife. It's hard to discuss without a common frame of reference. But she is always there for me.
How have your long-term goals or life goals changed since diagnosis?
It's hard to set goals at this point. I am thinking of taking a class at the community college. As far as anything long term I just don't have the energy on a daily basis to accomplish much. Just taking it slow right now
What is your work arrangement right now? What are your hours?
I am not able to work now. I am recieving disability from social security.
Since the diagnosis, what has changed in your work life?
Unable to work at my previous career of 15 years.
What has helped you continue to work the most?
lol, not applicable
What advice do you have for others trying to work through treatment?
Dig down deep and stay the course. It will get better
How have you dealt with any side effects of treatment?
Just trying to rest as much as possible, even though it's the last thing I want to do.
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
Take better care of yourself. Not that I didn't, but I could've done better.