I was in Orlando this past week, just for two days. Kind of a long way to go for one night. I went for a meeting of a myeloma group that I am a member of. I'm not sure I contribute much, but I definitely learn a lot. I also get to spend time with other patients and caregivers, which doesn't happen a lot. For me the benefits are worth traveling cross country. Two notes: One fellow patient, Yelak, is a 20 year survivor of myeloma. He's about my age, so he obviously was diagnosed at a young age. It definitely seems like myeloma isn't just a cancer for older folks. Anyhow, what was interesting is that even after 20 years of living with the disease, Yelak still talks about having the bubble of unknown hanging over him. He does velcade every week. And he knows that any day, the myeloma could renew it's strength or he could get an infection. Geez, I feel like I'm tired of thinking about myeloma after nearly 5 years. 20 years. But it's nice to know that people are living longer and longer with the cancer. Also of note is the awesome strength of Pat Killingsworth. He's recovering from transplant number 2 in the past few months. Dual transplants is one of several lines of treatment available to patients. Pat hung in there for our meeting, after being in Orlando leading up to this for the American Society of Hematology annul meeting. Pat left Orlando and headed to Iowa to see his transplant doctor. In Iowa Pat had a fever and some gut issues. He's now hospitalized until he can knock out the stomach infection. But how strong must Pat be to have endured a conference, our meetings and a couple of flights. He must have felt horrible but he persevered. He takes his role as advocate quite seriously.
This week I have chemo. Wrapping up the latest cycle of maintenance. Before I can do chemo on Tuesday, I have to have my port checked on Monday. It's clogged. Hopefully, it can get unclogged without much effort. If it can't be cleared, then I might have to get a new port. Fingers crossed I don't. I like my port, I don't want to go through the process of getting a new one.
Lastly I wanted to share the following op-ed from the LA Times. It's written by a woman who was diagnosed with a terminal cancer. I realized that I might be posting a lot of stories related to death lately. Don't worry, I think it's just something that myeloma patients need to get a little comfortable with. Doesn't mean we aren't going to fight. But it does mean, we/I am realistic.
Thanks for your kind words, Matt. I'm doing much better. You contribute far more than you realize. For other readers, Matt agreed to serve on a panel of a dozen media savvy myeloma patients to help advocate for patients and caregivers. Very important stuff. What makes Matt special is he is a "typical patient." So his opinion, hopes and fears resonate real and true. Helps us and those working with us get a feel for how we can help most. Thanks, Matt! You're a good friend and valuable asset to the group! Love your perspective in these posts. Honest, real.ReplyDelete