Tuesday, July 16, 2013

Bring It

This post has been a week in the making. My mental state has been all over the place. I'll try and summarize it all here.

First let's get to the perfunctory information:  Last Friday was my monthly visit with Dr Berenson. All is good. My numbers are holding steady. 24 hour protein is as low as it has been, 1080. The paraprotein, the bad myeloma-produced protein, is 53% of the total. Do the math and we have a real good number. Blood counts have been low, not unusual. Creatinin still moves around 3.6 and 3.8. Not bad, but I'm still looking for a lower number.

I did mention to the doctor that I'm experiencing a harder crash lately from the dex. I take a second steroid, Medrol, at home, but he has me off it 2 days before and after the dex. The goal is to not get too wired on steroids. Because of the crash, we'll now ease back onto Medrol sooner. We'll see how that works.  Nonetheless Dr B is real happy. I'm real happy. We all are real happy. 

I also saw the kidney doctor, Levine.  I visit him once every 2 or 3 months.  He's also happy. He's also the doctor who a few months ago told me to lose weight. I don't think he remembers. I reminded him and said I followed his instructions.

Let's talk about my drive home from Berenson. Typically Leslie comes with me Dr B. She couldn't last week, because we had a broken water pipe under the master bedroom. Water. We had a lake under our house. So last Friday she stayed home to deal with plumbers, demo contractors for the water damaged floors and walls, and insurance. Driving home from Berenson, I actually didn't know the extent of the damage yet.

Let's also talk about my job. I work as a planner at the Port of Long Beach.  We are gearing up for the start of construction of a billion dollar bridge. Before construction of the bridge can start, a whole lot of active oil drilling operations and previously abandoned oil operations must be relocated.  My job is to coordinate this relocation which is going to cost over $200 million.  Almost daily I make million dollar decisions. It's stressful. It's challenging. Every day is something new and I love it. It's pretty high profile and I take a fair amount of heat for the costs. I don't mind. I actually enjoy it. I think my approach has been shaped by my myeloma experience.  Paitence, calm. The problem is each day, each week, I get busier. I usually work during chemo. I often work at night or weekends. But it's a pace that isn't sustainable. I am trying to get help.

The point I'm trying to make is that while driving home from Dr B, I had myeloma, home issues and work on my mind. For a fleeting moment during the drive I felt like I was feeling overwhelmed. All this time I thought I could handle it all. But maybe I couldn't. So it was pep talk time.

The drive home from Berenson is 30 miles. On a Friday afternoon in L.A., we're talking two hours. It gave me a chance to define and refine my pep talk. There's a whole bunch of people who say Fuck Cancer. I get it. I said it at first. But for me, now I can't quite say it about my circumstance. I feel like it gives it power and control. I can't let the myeloma control me. I can't let any of this life stuff control me. I need to be in control. I need to control the myeloma.  It's kind of a new mind set for me. Driving home, I vowed to take control of everything. I can handle it all.  My pep talk gave me my new motto, which is: Bring it! I'll fuck you up.

Bring it myeloma. Bring it house. Bring it work. Bring it whatever. I'll win. I'll fuck you up. To my mind there is a difference, ever so slight, between saying Fuck Cancer and saying I'll Fuck You Up Cancer. I'm going to work out harder. Ride my bike stronger. Think more clearly. Eat better. Be clearer with my words.  Is this making sense?

Anyhow it turns out our house was more damaged than we anticipated. There's a hit. Then Saturday night I got a nasty bug from something I ate. I started to feel a horrible pain in my gut early that night. My first thought, was Oh Shit, there go my kidneys. Nausea is one symptom of failed kidneys. Damn, maybe they finally gave in. Then the throwing up began and it kept going. I might have gotten more sick Saturday night than I ever did during my two years of chemo. How about that? I woke up Sunday with my stomach feeling better, but with my whole body aching and feeling beat up. I had never had food poisoning before, but I'm thinking that's what it was.

I should note we were staying at Matt and Rich's house given the noise from the fans, blowers and heaters at our house. Suffice it to say, on Sunday I wasn't sure I'd be able to stick with the new motto. Perhaps I shouldn't have said Bring It. Because the shit was brung. And it might have gotten the best of me. I felt utterly defeated.  I slept about 20 hours Sunday. Nice house guest, right?

Monday I woke up and forced myself to ride to work. I wasn't going to let this crap stop me from doing what I know is vital to my recovery and my mental state. I had to ride. Today I rode again. Today I had a couple of meetings, where I clearly and definitively expressed my needs for continuing to do my job right. I didn't hesitate. I didn't stammer. I had to do it.

Our home is going to be messed up for maybe a month is my guess. That sucks. But I'm staying here. Routine and normalcy is so important to me as I continue to recover from the myeloma. I need to know ahead of time how my days and weeks will pan out. I've definitely developed a hint of being a control freak that I never had before. It keeps me going. It keeps me focused.  I really need to compartmentalize things. Not sure I was able to do that several years.  I can now. A new person at work said that the other Matt in our office is nice and friendly, and I'm the serious Matt. It wasn't meant as an insult and I didn't take it that way. But I did think: What the fuck. I've never heard that before. But I'll take it. I feel successful hearing that. I'm doing my job. I'm controlling things. And that's ok.

Myeloma, as my fellow survivors know, can be an up and down battle. So many things to think about, to worry about. We all strive to find ways to stay positive and focused. And that's what I am trying to do.

Until later, that is it.

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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.