Today was day one of cycle 3 of maintainence 2. Holy shiznit, chemo brain has turned me into a bad and unconfident speller). When I showed up to Phan's office today, I was not on the schedule, so they didn't have my velcade. Normally I am pretty OCD about confirming these things. But this time I didn't confirm. Normally I call the week before to remind the office I'll be there the coming Tuesday. Didn't do it this time. So when I was told they didn't have velcade, I assumed i'd have to reschedule treatment. Immediately I checked in at work, finding out my schedule for Wednesday or Thursday. I started thinking about delaying chemo for a week and how I hate to miss a treatment. It felt like a massive weight was suddenly dropped on me. Fortunately, they had velcade in their other office and one of their office staff, Janice, went to get it. I offered to ride along, feeling guilty for the snafu. But Janice got it, I stayed at office, talked to the doctor and nurses, and I was back on schedule, including having insomnia tonight.
Tomorrow I am scheduled to speak with some folks about being a patient ambassador for velcade and myeloma. This is something I've debated doing for a while for various reasons that I won't get in to. But I convinced myself I wanted to do it, figuring it'd be good to interact with other patients and share my experience. I also thought it'd be fun, educational and a rewarding experience. I'd have to fly back east for a few days in late January for training.
Believe me, I'm grateful for how well I am doing and how well I feel. In nearly 4 years with myeloma i've gotten to know people who are thriving, some who are struggling and some who have died. Quite a mixed bag. Right now I worry about things like blood draws, staying in shape, what kind of car to get, what to bring to Phan's holiday party this Friday. Given I have an incurable cancer, Dr Phan says these are good things to worry about. As they say...it could be worse.
All of the above, brings me to the title of this post. Myeloma Burnout. While I can tune my myeloma out pretty well, it is always hovering in the dark recess of my brain 24/7. It hit me today when thinking about rescheduling chemo and pondering being a patient ambassador that I'm kind of burned out on talking and thinking about myeloma (tired of thinking in general as well) But it can't be avoided. I look at people like Pat and Gary and Cindy and wonder how they do it. They are passionate, active, positive, knowledgeable advocates and have been doing it much longer than I have. How do they do it? It's an admirable mindset.
Having cancer is nothing like I ever imagined. It's an ongoing test. And right now, I trying to figure out the answer to the latest question. It's an open book test though and input from my fellow patients is welcome and encouraged.
Matt, I was just feeling the burnout the other day. I usually read Pat's blog every day, look at other blogs, MM Beacon, etc, looking forward to reading the ASH updates. Then one day, I just couldn't read anything else. Tired of looking at it, tired of thinking how it would affect me. But I know, in order to be my best advocate for myself and my care, I have to be informed, have to read and understand as much as I can. That's why I rely on Pat, Gary,Cindy to interpret and relay the info in more understandable ways. Especially now that chemo brain seems to be taking over my life. Just finishing my 8th month on Velcade and the fog is getting heavy. Dex this morning, so it should be a fun day. I am now rambling...... Hope your kidneys are doing better! Take care!ReplyDelete
Well said, Matt! Enjoyed spending time with you last week! Your a good guy, new friend!ReplyDelete