Friday, May 10, 2013

Change, Change, Change

It's been a quiet week on the blog front. Not too much to report.  I had chemo yesterday. Day 15 of the latest cycle of maintenance. Now two weeks off from the chemo drugs. Although, to be clear, most home meds I take aren't part of the two week break. 

My blood count is up over 11, so no procrit shot this week. That's a little bonus.  Talked with Dr Phan briefly. He didn't have much to say. All is good. He did predict that my creatinin will be down another point over the next couple of months. Currently it's at 3.8. Let's hope he is right. I've been adding a few things to my diet, which is nice. We'll see the kidney doctor next week and see how I'm doing with the diet change. I imagine, it's all fine.

Tomorrow is the annual Tour de Long Beach bike ride. Obviously I haven't done it in the past couple of years. But I'm doing it tomorrow. 31 miles. A little nervous about the distance. But as my niece Destiny called me, I am an efficient turtle. I'm slow but I keep going. So despite the nerves I'll be fine.

This week I've been doing a whole lot of writing at work.  There is a real distinct, brief and non-creative style to work writing. Doing this blog is a welcome relief. I can write anything and in any style that I prefer.  I can ramble on and on about nothing or whatever is on my mind.

I've also been thinking(not obsessing, a welcome change) about changes brought on by  the myeloma. Not physical changes. But changes with me, with my lifestyle, with relationships. So much has changed. Obviously.

Not sure folks remember, but when I first started this blog, I was concerned about a couple of things. One was whether I'd survive. The other was whether for the rest of my life that my identity would be as a cancer patient  Either option really seemed to suck given my perspective at the time.  Myeloma is funny. Even people with complete remission are doing maintenance (not everyone) and worry about the cancer coming back.  For me, I have partial remission. Maintenance is working like a charm. But most likely, the myeloma will adapt and I'll have to switch some day to new drugs and fight to get the myeloma back under control.

We all deal with these things differently. My approach was to circle the wagons. I wanted a tight circle focused on my health. That was what worked for me. I wanted others for support, but that's about it. Sorry about that. But I'm the quarterback and I call my own plays. I've talked a lot in this blog about my pre-myeloma life. I've voiced regret, guilt and done a lot of  unproductive looking back, with lots of what ifs. Pre-myeloma I liked my personal, quiet space. I've always wanted to insulate myself. But when I wasn't in the Matt mode, I liked to share my time with others. But I liked to be in control of when that shift happened.   Cancer changed that. Cancer changed me.  The circling of wagons meant that we had to take some drastic immediate steps to build the wagon train around me. Like in Butch Cassidy and the Sundance Kid. They knew they were surrounded by the Bolivian army. But they decided it was the two of them against the army. They got to that point together and would fight together. In some respects, that's what Leslie and I did. We chose a path and that was our focus. Going to Berenson was a tough one. He's unconventional in the myeloma world. Although that is changing somewhat, given his myriad successes. But I liked his approach. I liked his complete life philosophy. And that's what I have.

I had to change and limit input from others. I'm sure it was hard for folks to understand. I get that. It's hard to explain, but that is what worked for me. My open door policy went out the window. Do I miss it? Yes. Was it necessary? Yes. I'm still here. Leslie stepped up hugely to be my caregiver. Massively. She possesses a caring and strong spirit. Before all this I don't think I was clear on what commitment to a relationship really meant.  I know now.

I'm flawed, but I think I have some decent qualities. None of us is different in this regard.  The old Matt would only focus on imperfections. No more. But I think that is why I carry so much guilt and regret of my pre-cancer years. I was angry and mad. Before cancer. I'm was pretty intolerant of what I saw as imperfections. Hard to explain this. And it's hard for me to accept my past given my new life view.  Everything is in context. Things I did before were based on what I knew at the time. I still don't know a whole lot, but I know a few more things now.

I've changed. I've changed for the better. My worry about dying is gone. Perhaps just for  now. If the myeloma were to kick in, I might be fearful again. But probably not. As I indicated on May 2, two years was my goal, my finish line, my touchdown. It's all bonus now. I'll always fight this thing, but whatever happens, happens.  And with being identified from now on as a cancer patient, I'm ok with that also.  I'm proud of my fight and my gumption. I''ve learned a lot about myself. I've learned a lot about others. I've met some amazingly strong people. Patients, doctors, nurses.  People I never would have met if it weren't for myeloma. Cancer is who I am and that's ok.

Having said this, I still have a desire to live right, to do a good job and to succeed. I'm not becoming a meth manufacturer a la Breaking Bad. But I must have meaning as an aspect of all things I do.  There are days when I'd like to shut it all off and crawl into my cocoon or cozy up anonymously to a bar. But overall, that's not my mindset.

Curiously all these things make it tough to reconcile the circling of the wagons. I miss being footloose and fancy free. But then again I don't miss it. I like living and this is how I do it. Will things change going forward? Will I change more? Will I change back as time goes by? Heck if I know. I'm just enjoying my bonus days.

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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.