On March 20, I am hosting a Cure Talk Panel. Typically, the discussion focuses on myeloma treatment and include a doctor who is a myeloma specialist. I've been on a couple of panels. Recently, Dr Berenson was the guest expert. Even though he's my doctor, I heard some things from him that were new to me.
The panel I am doing in March is going to be different. I want the discussion to focus on working with myeloma. That's been a challenge for me; in terms of my energy early on and also with dealing with the bureaucracy. I was not told of any advisory books and never heard from others about how they dealt with the challenges. I think part of it is that myeloma typically strikes older folks, and therefore retirement or going on disability are the career options. I think. I don't know for sure. I know with me early on, I couldn't see how I would ever be a full time productive employee again. But now I am a full time employee, and frankly I think I am a much better and more productive and more conscientious worker than I ever was before. But where the F are my kudos? Don't seem to be coming any time soon. Just yesterday, I talked with Dr Phan with how I am such on outlier with my myeloma.... Demographically, how I reacted to treatment initially and how I manage treatment now. But! But as I get to know fellow myeloma patients, it seems like there are more outliers. Us outliers aren't necessarily outliers any more.
What's interesting is that very few people at work ask me how I am doing. Either they assume I'm in remission or it's just old news to them. And I don't volunteer much information. I'll tell people my situation if they ask, but otherwise my health is on the down low. But I am starting to think that at some level there is a subtle, under the surface bias preventing my long term opportunities for advancement, simply because of my condition. It's hard to describe, but I can feel it. It is almost like management is ok with getting what they can get of me while they can, but I shouldn't think about any promotions.
Balancing having cancer with needing to stay employed and insured has been tricky. And how it all works is not part of your discussions with doctors. It's something that I imagine most cancer patients learn on the fly. I have.
And that's why the March 20 Cure Talk Panel will focus on working with cancer. I want to have a person or two talk about how they balance work with treating their myeloma. I am actually trying to get Don Baylor, one time baseball MVP, manager and now batting coach, to join the panel. He has had myeloma for several years and given his previous success as a manager and now inability to even get a sniff at open opportunities, I wonder if he thinks his myeloma is impacting his chances. Through a mutual contact, I hear he might be interested in doing the panel. I am also am trying to get a representative from a cancer rights legal firm. Cancer is considered a disability under the American Disability Act. I didn't get that at first, but I do now. It's absurd at times how I have to stress and worry and strategize about my role at work. It can be annoying, but on another level it is stressful and not useful in my attempt to stay healthy and keep the myeloma in check.
Don't get me wrong, in many ways my bosses have been helpful and understanding. But in many more ways, I've had to really look out for number one and I've had to fight the man. Education and shared experiences can perhaps help tackle this issue. Time will tell.