Saturday, March 9, 2013

Don't Google It

Today I read a story (well, the first four paragraphs) about a scientist who won a Nobel prize three days after he died. However, the Nobel committee's policy is to not award the prize posthumously.  Winners must be alive. So the committee was left with a bit of a quandary  What happened is something that I don't know, given I stopped reading.

I stopped reading at these exact words: "Don't Google it".  This scientist had been diagnosed with pancreatic cancer roughly three years before his death.  Typically, with the diagnosis of  his form of cancer, a patient had maybe 6 months to live. He was able to get in a few good years. But upon his diagnosis, he told his family "Don't Google It". He knew if they went on line they'd be frightened by what they read.

And that's where I stopped reading. I'll pick up the article again. But I stopped because it got me thinking.  When I was diagnosed, I sent an email to some key folks who I work with. I knew that I was going to miss significant time. In my email to folks, I said to not believe what they read on line. When I first heard I had multiple myeloma, I went on line and didn't like what I saw. Basically, it sounded like on average myeloma patients lived six months to a two years. Scary stuff. I know my family and friends read this as well. 

But if you read deeper, you realize that the data in the studies used was a few years old. Myeloma treatment is progressing at a wonderfully rapid rate.  The quote unquote average myeloma patient is older and less able to tolerate the treatment. I'm young and had been in pretty good health. So what I read on line, I determined didn't apply to me. Don't get me wrong, I was scared and there were times I thought death was just around the corner.  When we searching for the right combination of drugs, it was a bit of panic time, and even Berenson said things were dire if we didn't get the right mix of drugs.  But since we found a treatment that worked, things are looking up.

I also read a story (the whole thing) by a fellow myeloma survivor, that discussed the elephant in the room. The elephant being death.  People don't want to talk about it. But it has to be discussed. We, as patients, have to be aware of it.  I'm aware of it. I know that myeloma supposedly never really goes away. It just gets controlled. However, my mindset is that I've got another good 30 years to go. A part of my brain thinks I am going to have a miraculous, spontaneous and utterly complete remission. My maintenance chemo schedule is such that I go two weeks without treatment. During those two weeks, I feel fantastic, almost as good as I felt before all this. Going to chemo is a stark reminder and slap in the face.  But during those off weeks, I'm really trying to live as normal and as active as possible. Living like that, will help achieve that sudden disappearance of my myeloma.

When I met Brad the other day, he talked about his diagnosis and how he told his people "don't google it".  I'm paraphrasing, but you get the point. He had spent a fair amount of time doing his own research and knew that it would scare people.  He also realized that myeloma treatment had progressed significantly. He is also young, like me, and plans on being around for a long time.

March is myeloma awareness month. I've been trying to post a fact a day on my facebook page. We're on day 9. But what's interesting is the nearly complete lack of responses I am getting from people. A few people will like what I write, but almost nobody will actually write a comment. I am finding it really strange. Maybe I'm being too heavy handed with the fact a day. People don't know what to say. Cancer elicits very different responses from people. Generally, people don't know what to say. The author of the story about the elephant in the room discussed that he often gets people saying he doesn't look like he has cancer. That's also common with fellow myeloma patients. I hear that comment. It's a good thing.  But it's an indication of there being an image or perception of what a cancer patient looks like. I think I had the same misperception before my diagnosis.  The thing is, we look like regular people (aside from puffy necks and faces from steroids).  For my first year, people really avoided the cancer topic with me. Now that I apparently look perfectly fine, some, not a lot, of people are bold enough to ask me what's happening with my treatment. But I go back to this odd lack of responses on facebook. I'm not sure I was expecting an outpouring of questions or interest, but I thought I could get some rise out of folks. It's odd. But maybe not so odd.

I'm trying to get in shape for the Big Climb. I've been riding my bike more. I'm going to ride to the lab today. I'm getting in shape. So I suppose I ignore the myeloma, the same way other people do. It's a non issue. Well, it's only a issue if I let myself start thinking about it too much.  If my head isn't on straight, I get bummed.  The other day, a Monday, I had a tough day at work. My brain felt like it finally quit on me. Not a single coherent thought was formed that day. I bounced back and now everything is fine.

Yesterday, I walked Gracie, went to the gym, had acupuncture, and went to a movie with Leslie. That's a regular day. That's a good day.


  1. It is hard for people who love you, to know what to say sometimes. To not feel sad. Or that even the good news isn't good enough. Sounds like a great day yesterday.
    Love, Mom

  2. Hi, Matt! Four years ago my son also said "don't google it". But somehow I felt that I had to KNOW what was happening, and certainly what was going to happen.
    It was a big shock to me. I went back to the time that I realised I was pregnant with him and searched each and every morsel of food I ate, what I drank, what I did during that time.
    He was born at 32 weeks and weighed 2.045gm. After 2 weeks in the incubator (his father said "... and you know, my son was in the incinerator for TWO WEEKS!”, he struggled with allergies ranging from milk to egg. At 9 months, when he got his small pox vaccination, he contracted cow pox and nearly died.
    He was just always more susceptible than my other two children. When we went a-caverning, he managed to get a “fungus” on his bones.
    He turns 40 this year. His biggest struggle is against being tired. During the winter last year, he refurbished/restored/re-did a caravan. It kept him focused.
    The cold seems to be the worst enemy. He receives pepper treatment for pain instead of morphine.
    I don’t really ask him how he is – generally, yes. But very seldom “How ARE you”. I can hear the pain in his voice. I don’t have to ask. And there is no real point in that exercise. He has to pick himself up and move on – while he still can. For that, “You look great!!!” will do.
    A month ago a friend died from pancreas cancer. I cried my heart out. I do not want to voice my thoughts. Almost not even to myself – because I googled it.
    I’ll keep in touch.
    Kind regards from The Cape of Good Hope.


Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.