Monday, February 28, 2022

What to do, What to do

 When I was diagnosed, I was in shock, depressed, angry and in a way relieved. I'd been sick and getting progressively sicker for a few months, leading up the diagnosis. It was good to know what I had. But to be clear, the feeling of relief was way way and way lower than anger and depression. Blasting through 4 different treatments in the first year sucked and really strengthened the depression and anger. Anger at times was the overwhelming feeling. I started this blog because I didn't want to talk to anyone. I just wanted to be left alone and figured I'd catch up with folks on the other side. I assumed I had about two years of life left when diagnosed.

Fast forward nearly 11 years to today, and I'm still here, healthier than I've been since before I was diagnosed. And the blog is still here. It's still a way to keep friends and family up to date. My mood varies though between wanting to be open about my health and wanting to silence all external contact. Of late, the silence sentiment runs high. 

With Covid, I've only done telemedicine appointments with Dr Phan, which is fine when I'm doing well. And I am doing well, better than I could have hoped for.  But the thing is I don't want to talk or write about how well I am doing. As I told Phan, it's boring. And I feel like as a giant asshat saying I'm bored, when good friends are having challenges. Survivor's Guilt is real. And maybe boring isn't the right descriptor. Monotonous might be more appropriate. Take medicine, see doctor, do infusion, repeat. Ad Infinitum.

Despite the good health, I still am overloaded with appointments. I've got a surgical appointment to have my calcified port removed. Leading up to it, I have to get an ekg, chest x-ray and blood work. Argh. Also coming up, it's yet another MOHS procedure on my forehead to remove a Squamous Cell Carcinoma aka mild skin cancer. Meanwhile, Dr Phan hasn't been able to locate Evusheld, the synthetic antibody that might give me protection against the virus. I'm now on a wait list at Cedars Sinai to get it. No idea how long it'll take to get it. 

My walking marathon continues. 159 miles in January. 130 in February.  I'm training for something, but for what, I don't know. 

Oh, have I mentioned before that despite having cancer, regular life doesn't suddenly stop, some of it is  annoying and some of it is outstanding, in fact better than before myeloma. Bills, neighbors, house following apart, friends, relationships, laughs, love. I was fortunate enough to be able to retire and focus on health. It's great and beneficial to how I feel, but what the fuck have I accomplished since retiring? Not a whole lot. I'm a little sheepish about that. And I have to say that the farther away I get away from work, I'm not sure how I managed it.

Obviously I don't write nearly as much as I used to. I've thought about shutting the blog down before. I'm gonna keep it going for now. But for all the reasons discussed above, I'm changing the focus of my blog. It's not gonna be about my myeloma journey. Yes, I'll share crucial treatment information. But I'll instead share stories of and by other patients. And I might share some other stories about me...but not about my myeloma. Is it permanent?  Who knows. But I just can't write about it anymore. It's already in my head nearly 24/7.

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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.