Thursday, April 4, 2013

Hold on to your hat

I drove Leslie's car to work yesterday. When I take my car, I take the fastest and least scenic route home. There's no reason to prolong  the peak hour drive. What's interesting to note is that when I drive Leslie's car, I put the windows down and take the longest, most scenic way home, along the coast. It's almost like driving a different car is a mini vacation. I'm not in a hurry, not rushed, not anything other than serene.

Driving home yesterday, I went down the coast and then through an area known as Belmont Shores. On 2nd St in Belmont Shores, I caught a red light. Looking to my right I saw Legends, a landmark sports bar/restaurant in Long Beach. They have a whole lot of tvs and a view of all the activity on 2nd Street. My kind of place. I saw a handful of people with cold beer, food and various baseball games surrounding them. A little bit of envy crept in. I thought how that used to be me.

Hanging out, no matter the day of the week was how it was done in my younger days. I could easily waste a day or every day sitting somewhere with a couple of friends, drinking beer, watching whatever sport was on. I made a mental note to touch base with a friend who I don't see very often, to see if he wants to watch the final four games this weekend. The point was that whlile I sat at the stoplight I considered how things have changed,. Nowdays I'd rather come home to a safe happy home as opposed to sitting in a bar.  But also I thought about how even if I wanted to, I couldn't sit somewhere all day like I used to. But why is that? I'm older? I have reduced energy from the myeloma and low blood counts? I feel pretty darn good. Things seem normal. But at the same time, can I even remember normal.  Perhaps my usual bit of tiredness that I now carry with me isn't how I felt three years ago. I don't even know any more. Myeloma is funny. It lingers and hovers forever, basically. But other than going to chemo once every two weeks, I don't really think about it. If someone said I was completely cured and I could be worry free from this point on, I'd agree. I don't feel anything, The problem is that I've been told myeloma is incurable. It'll always be there and as things stand now, it could come back any day.   Every day, there is a fleeting moment where I think "oh shit, I'm tired today because the myeloma is kicking in." My rational side  knows that that is a ridiculous thing to worry about. I'm doing real well, life is great, and it's pointless to think about what might happen.  I really do try my best to not think about it. I joke around with people, I work, I eat, etc etc. All normal things that make me feel like everything is all right, that I made it through the tunnel. Stay positive. Nothing is wrong.

I've been thinking a lot about stress and attitude lately, and the role it plays in our health and more specifically with cancer.  I suppose I'm thinking about partly because Monday I had my snapping moment. I'm better now, but it got me thinking about my mental state. When I was first diagnosed, Leslie and I really wanted to de stress everything around us. Minimize that shit. We went to a cancer coach to learn tools for making things happen. There's a young woman who blogs for the New York Times about her cancer journey. Her name is Suleika Jaouad and her blog is absolutely one of my favorite things to read. Check it out. Anyhow, it's interesting that from reading her story and others, I've come to realize that so much of what I feel, worry about, and deal with is typical. I'm not alone with my roller coaster thoughts and emotions.  In a couple of posts from several months ago, she talked about how her life has changed and how she's grown since the diagnosis. She'd prefer not to have cancer, but is proud that she has been able to achieve so much since her diagnosis. She discusses how that with her changes and the diagnosis, came  relationship changes. People all deal with this differently. She also had a recent post about a friend she met in chemo who passed away. That right there is a reminder that this is serious shit. It's not just fun and games. Despite my living normally and thinking positive, there it is again, myeloma hovering and lingering, Oh I don't know. Perhaps being blissfully ignorant is just who I am. Just block things out or pretend like I didn't even notice.

Which brings me back to stress and attitude. I posted an article the other day that basically says having a positive attitude doesn't increase your chances of beating cancer. I beg to differ. If you just look at attitude itself, all on it's own, then sure it doesn't have an impact  But if you look at the spin off effects of your attitude, positive or negative, it'll increase your odds. A positive attitude allows to you to focus on health doing everything you need to do. As opposed to a negative attitude which can paralyze you. I think I'm prone to a bit of depression and self loathing, so I feel like for me, maintaining positivity is super vital in this fight.

But what if it doesn't matter what I do? Some people survive and some don't. It's kind of like that question that I ask myself, and I'm sure others do, is that did I do something to earn this. For me, I do have a sense of karma playing a role in my diagnosis and the myeloma is balancing things out.  But if I had it coming, does everyone else who has cancer deserve it. Absolutely not. Of course not. That's an insulting concept. Nobody deserves it. Not kids, not adults, nobody. That, however, puts a big hole in my theory that this is my fate. It can't just be me that deserved cancer. Since  nobody deserves it, then neither do I. Fortunately I have another theory of the cause of the myeloma and this one I'll hold on to.  During my second round of chemo two years ago, I  had a breakdown, tears, fear and asked the question why me. Very dramatic. Very traumatic. It was horribly frightening.  Compared to 23 months ago, I am at ease now. I suppose some of that comes with knowing I made it through the hard part. So with regard to why me. If it's not fate, then it's something else. About a year before my diagnosis I had foot surgery to remove a spur that was the result of childhood accident when I stepped on a nail, it went through my shoe and hit a bone, causing a bone infection. The spur I had removed was a result of the bone infection, My theory, discounted by my doctors, is that the surgery unleashed toxic stuff that had been stored away in the bone spur. And the toxic stuff led to myeloma.

My foot has been much better since the surgery. Although lately and particularly yesterday it gets sore again. After I got home I was changing shoes to walk Gracie (Mr. Roger's style) and I realized that wow, my foot kind of aches like it used to. Well, that sucks.  I've been real fortunate that I haven't gotten neuropathy from the chemo. For a lot of people, they have super painful feet and hands. Maybe I am experiencing neuropathy, but just in the area of surgery. The nerves were moved around during surgery, so maybe they are hypersensitive because of that. Perhaps the foot isn't aching because the old injury is rearing its ugly head. But whatever!  There is no way in hell I would do anything to fix my foot if it needed fixing, Are you kidding? Absolutely not.

During the Cure Talk panel I did a couple of weeks back, one of the panelists said studies are showing that stress or the lack thereof doesn't impact your chances of surviving cancer. In fact he said, he thinks stress could be good in that it wakes up your body and your immune system and puts your body in the fighting mode.  That is kind of what acupuncture does....heightens your immune system, allowing it to fight stuff.  I'm paraphrasing him, if even that. But what I got from him is that stress might not be all that bad. Combine he views with studies that are saying having a positive attitude doesn't help, and I'm left scratching my head. I feel like what I am doing is working and I'm going to keep doing it.  I'm going to continue to stay calm, think good thoughts, and move forward. Crap ass days like I had Monday are bound to happen, But for the most part, I plan to stay positive and perhaps blissfully unaware. Whistling dixie. Myeloma. What myeloma?

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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.