Doing The Work
I was asked the other day, what was the key to doing as well as I am. Excellent question. I hadn’t really thought about it. I feel like I’ve just done what I needed to do. I thought about it and my answer was true yet a little cliche: good myeloma specialist, good medical team, support network, my wife, family, and new drugs. In hindsight and talking to my wife, I left out: hard work, focus, and plain old dumb luck.
A series of fortunate events
For me, my cancer journey has been a series of fortunate, serendipitous events. It’s my primary oncologist, who I love and still see, just happened to be on duty when I was first hospitalized for severe anemia and near kidney failure. He diagnosed me instantaneously when other medical folks were scratching their head and while I got sicker and sicker. It’s being able to get an appointment with my current myeloma specialist much sooner than I could with a second specialist. Based on Google (use caution with google when researching your disease) I was leaning towards the second specialist. But once I met with the first specialist, I was sold. I’ve never looked back. The luck or fortunate events are far too numerous to list here.
But what’s also been key is putting in the work. Mentally and physically. And it hasn’t always been easy. Many a day, I‘ve felt too tired to even move. Some days, I could easily lie in bed and do nothing and feel sorry for myself. Don’t get me wrong, I’ve done this. I allow it. I know my body and mind need rest. I listen to them. But I also try and get up and get moving. I’m very into self-talk lately. I go on long walks and that’s my therapy.
Learning to be more open
I was 49 when diagnosed, in decent shape, and not into sharing personal things with other people, even those closest to me. Annoying, right? If I needed to get in shape, I simply did it. If I needed to lose weight, I did it. If I needed to escape and have quality Matt time, I just got in my car and drove or got on an airplane. Easy. Now I have to be thoughtful about things. I need dedication, flexibility and have (sort of) accepted my new shortcomings and limitations. I hated it at first. But it was necessary to survive.
Nowadays I am a much more open person. I understand that everyone has something they may be challenged with. Patience, communication, flexibility, honesty, and trust have entered my life.
Currently, the real difficult issue for me is my physical well-being. I’m not talking about my cancer though. I’m talking about being in shape, 24/7 bruised arms, energy shortfalls, and old injuries rearing up to remind me they’re still around. A lot of these changes are likely just me getting older. I mean I am approaching 60. A lot is due to ten years with myeloma and cancer drugs taking their toll. And a lot, I mean a lot, is due to the huge amounts of steroids I’ve taken since being diagnosed. They’re a necessary evil when it comes to treating myeloma. More specifically I am referring to dex or dexamethasone. I tweeted recently that dex is pure evil, and I hated it. People, fellow patients really chimed in. The side effects I am experiencing are common to many myeloma patients. I’m developing cataracts, I get skin cancers, loss of muscle, blah blah blah.
I'm more positive and self-assured
Lately, I’m dreaming of running again. It’s been nearly 15 years since I’ve done that. But I talk myself out of it, when I remember an old hamstring injury that never healed correctly, a bone spur in my right foot, back issues, hip tendinitis, blah blah blah. I’m on a new exercise program to build strength. Since my myeloma is stable, I’m going to have a talk with my specialist about cutting out steroids for a few months. Let’s see what happens. I know he’ll say no. But I’m studying and putting together a compelling argument. My local oncologist has given me the thumbs up. But I like the consensus between the two doctors.
And that’s where I’m at. I’m hugely grateful to be where I’m at. I’ve learned a lot about myself. Many times I miss the old me, in terms of freedom. But I also appreciate the new me, in terms of my attitude towards life. Even with cancer, I’m much more positive and self-assured. Wow, I feel like I just subjected everyone to my counseling session. It helps though. We gotta talk about these things. We need goals, maybe tempered by reality, maybe strengthened by lofty dreams. Thank you all for reading/listening.
What type of blood cancer are you or your loved one diagnosed with?