Friday, September 29, 2017

Two Months and a Day

It's been two months and a day since I retired. So far it's pretty darn nice. What have I been doing you ask? Two trips; Chicago last month and Philadelphia last week. Philly was to make some videos describing my darzalex and myeloma experience. Super fun. It was the real deal production production. Make up, wardrobe, lights, multiple takes and so on. Photos below. I was joined by two other patients on darzalex. Wonderful people.

Since July I've had two MOHs surgery on my forehead to remove squamous cell carcinoma aka skin cancer.  On Mondays I volunteer at the Leukemia & Lymphoma Society. I've had several lunches with ex-work people and that might cover it. I will say this, I feel a million times better not working. Energy is great. I can take afternoon naps. Retirement has been exactly what my old sick body and mind needed.  I'm getting my pension. Social Security Disability is in the works and I've applied for copay assistance from the LLS.

Today I took about a ten mile bike ride. While I've lost weight and have been working out regularly, I'm definitely not in bike riding shape. It might be time for the old man, upright bike. Leaning over the handle bars hurts the shoulders and hands and wrists. What the fuck?!

Mentally I'm doing alright. Still figuring out who I am and what my passion is. The conversations associated with my travel are quite cathartic, but also reinforce that I can't just be identified by cancer/myeloma. A friend of Leslie told her that life is art. Everything we do is art. This philosophy actually is helping me out.

Thanks to Leslie, we got Berenson to reduce my steroid dosage, reducing not just the emotional and energy ups & downs but also reducing the negative physical side effects of non stop steroids. Now what I'd love to cut back on is the baby aspirin. My blood and skin are so fricking thin, I'm constantly bruising and bleeding. I don't even know where they come from. Below are photos of my currently bruised foot and hand.

We're coming up on 56. Who would have thought?

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Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.