Thursday, July 25, 2013

Hello My Name is Matt and I Have Cancer

This is my off week from chemo. My most recent treatment was Thursday of last week. Afterwards, I had the typical two days of being utterly wired, followed by two days of being super tired and emotionally weak.  As I wrote recently, the post chemo/post dex crash lately has been more difficult. It's lasted a bit longer and I've been more tired. This week on Monday and Tuesday I was tuckered out.  I didn't have a lot of excess energy. I even took naps at lunch time on my office floor. But by Wednesday, I was good. Back to my energetic self.  Berenson adjusted my schedule on taking Medrol, a steroid in pill format, to try and lessen the crash. Didn't really work this week.

I must add, though, that even with the tiredness I rode my bike to work every day this week. In fact, I rode 4 out of 5 days last week, only missing on the day I went from work to chemo. I needed my car. So we have 8 out of 9 days. Even with chemo and post chemo, I'm making the ride. Strength and stamina on the bike has come back. Hills, speed, distance....all feel easy. Riding to work, even when tired, isn't a chore at all.

Also of note, I've been riding to work with two co-workers just about every day. This is new. In the past I usually rode by myself, I liked the solitude. But now I like having the riding partners.  It's good chit chat time. Today  I summarized the Bachelorette for them. 

I now ride with Alex who has worked at the port for a few years and has been real supportive of my journey over the past couple of years. And I ride with Paige, who is fairly new to the port and didn't know my health situation.  It's been great riding with them. It's like a friendly car pool, but on two wheels. As I said, on my chemo day last week I didn't ride. I simply told Paige that I couldn't ride because I was leaving work early. That sufficed.  The next day she asked how my afternoon off was. Well, that's when my mental gears started shifting. I couldn't just say my day was ok. But do I say I was at chemo?  Do I say I have cancer? I wanted her to know, but not to feel sorry for me or anything like that, but simply to explain where I was. I hadn't crossed this barrier before. What do we tell someone new we meet about our cancer? Is it even pertinent? I'm riding my bike, I'm working and life is pretty normal. Myeloma doesn't really come in to play, other than getting chemo, other than experiencing mood swings after chemo, other than the millions of bruises on my legs because of my low platelets.  Besides the doctors, nurses, fellow patients, and work acquaintances I haven't really met a brand new person in years.  What do we say? What if you're dating? What if you're going for a job interview? What if you can't attend an important meeting because you have chemo at the same time? What if you can't go to happy hour? Am I making more of this than I should?

Anyhow, I told my Paige that I had been at chemo, that I have multiple myeloma. I decided it's pertinent. Not too pertinent, but pertinent enough that it warranted bringing up.  She asked a couple of questions and that was it. End of discussion.  This past Monday I was really feeling the crash and was not in the talking mood. But the three of us still rode. I let them do the talking and I hung back a couple of bike lengths.

For work, I deal with a whole lot of contractors and consultants and oil field workers. They know that I'm unavailable every other Thursday afternoon. That's all I've told them. No details. That seems to work.

Also at work, for 8 weeks this summer I am a mentor to a high school student. She's part of a program that the port does every summer where two dozen local high school students work with a mentor, earning money and gaining experience. I have to admit I was absolutely against participating in this program.  I saw it as a drain on my limited time and something that wouldn't be worth my effort.  However, I was asked to take one specific student, Raslyn, who will be attending UCLA in the fall, is planning on going to medical school and who volunteers regularly at Long Beach Memorial Hospital, a place I've spent a lot of time. I couldn't say no. And it's been awesome. She started about 3 weeks ago.  I had the same dilemma with her. What do I tell her about my occasional mood swings, about missing work every other Thursday? I figured I couldn't do what I do with my co-workers after I've had dex, which is warn them to avoid me.  I'm supposed to be a mentor, I can't just snap at a high school student. I decided I'd tell her my situation. I figure part of being a mentor is being honest.  She had no questions.  Today however, we got into a discussion about work and people with different agendas and how you deal with them.  I relayed some things I learned over the past couple of years. Myeloma related lessons, but totally applicable to work. She did ask a couple of questions about my health and that was it, end of discussion.

I am now a strong a proponent of the intern program. I have my student while a couple of my co-workers also have students. These 3 interns happen to all go to the same super advanced school here in Long Beach, called Cams.  These 3 are super smart, super motivated, super nice. One of them, a high school junior, was recently appointed by the Governor to the California Board of Education. How do we compete with that? We don't. I don't. Every Thursday, the six of us meet and one of us presents what we're working on, followed by 30 minutes of the kids asking us whatever they want. Today was my turn to present. Next week I am taking them on a field trip to the oil islands in Long Beach.  These are man made islands off the coast with active oil production activities.  In the free form discussion they wanted to discuss college.  I had a little heads up when the day before the 3 came my office to tell me that one of them wanted to talk about relationships. What? I am even allowed to talk about that with them?  I tried to answer, based on what little I know and I told them that no matter what, to stay true to themselves. Don't sacrifice your values for somebody else. Seems like vague, harmless enough advise.  But while chatting with the students, it hit me that I really like this. The kids are so cool. They're smart. They're funny. They're ready to attack the world. This being a mentor might be more beneficial for me than it is for them.  It's forced me to step back and look at how I deal with work & life & stress & success & failure. It has reminded me to be thoughtful about what I say and do. I think I mentioned before that I was concerned, as I continue to feel better, that I might be falling into old patterns. Letting work get to me. Letting people get to me. Not good.  Serenity is the goal. Focus is what I tell myself daily.  I haven't told the other two students about my health.  I might.  I've only told Raslyn, and I would guess they've spoken about it. I'm fine with that.

But like I said, this has forced me to think about how I describe myself to new people. I easily and regularly tell people about my love of the Minnesota Vikings. I talk about tv, about my dog, about Leslie, about family, about everything.  I'm generally an open book. But the cancer chapter is a bonus chapter. I'm curious what other survivors tell people they just meet.  Maybe we should just wear "Hello my name is .... and I have myeloma" badges. Problem solved. Seriously I want to know if other folks even think about this.

One last note, Saturday will be my 3rd go at paddle boarding. Last time I went it was in the choppy ocean and I spent a lot of time in the water. This weekend, it's back in the ocean and my goal is to fall no more than 10 times. It's a modest goal, but I think it's attainable.

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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.