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Friday, May 6, 2011

Statistics and Numbers Sometimes Mean Nothing

One thing that always drove me a bit batty when I was sick was the fact that as soon as someone heard I had Hodgkin's Lymphoma and knew that the cure rate was pretty good, they acted like "oh she's fine." Wait. Let me get this straight. Because a cancer has a high cure rate I am ok? I am fine? I am not sick? Or I am not as sick as someone who say has, breast cancer?

I want to set the record straight here. Hodgkin's Lypmphoma DOES have a good cure rate. It used to be almost ALWAYS fatal until they discovered the chemo regimen that could kill it. The specific drugs have changed over time. The most frequently used now would be ABVD. I have described it a few times on this blog. If you are interested in reading up on Hodgkin's and it's history here is a link:

Going back to what I was saying, I suffered for a long time. I was so sick. I had a pressure in my neck that became constant. I walked around, feeling like someone had their thumbs jammed into the sides of my neck 24/7. It was always worse at night. I would have shortness of breath, difficulty sleeping, eventually wheezing and  more. I felt so tired. I had a hard time walking up stairs. Talking became a chore. I got short of breath after one or 2 words. It sounded like a I had run a mile. I felt embarrassed about it. I didn't know why I was so short of breath. I had symptoms that went undiagnosed from around 2004 to 2007. By the beginning of 2007 I was packing up my house and moving. I was working very hard and cleaning, packing up boxes etc. I was pale white. I was wheezing constantly. I was so short of breath I felt like I must be sick or have asthma or something.

There were a couple of times I had coughed up some blood. When I say that, I don't mean I threw up blood. I mean, I coughed up flecks of blood. It almost looked like....a clot. Really it was odd. I told myself, that I had gotten some blood from coughing so hard. I had developed a nasty cough after all. I kept a lot of it to myself. I was scared and the docs kept saying I had an enlarged thyroid. I had a CT of my sinuses. Long story short, by the time April of 2007 rolled around I slept with 5 pillows behind my back so I could sleep sitting straight up. I was so sick. If I layed flat, I could not breathe. I had to sit up. I felt choked 24/7. I gasped for breath. I finally saw a doctor who LISTENED. I had an MRI. They found the cancer. I was in surgery on May 2, 2007. They diagnosed me for sure about a week later. The piece of tumor they had gotten out was so hard they could not cut it with the scalpel. They had to send it to the Mayo clinic for diagnosis.

While waiting for treatment to begin and laying in my bed I could not move left. I could not move right. I had to stay totally still because if I moved I could not breathe. If I moved I would be thrown into such a hideous coughing fit that it hurt. I felt pains stabbing into my left shoulder blade like someone jabbing a knife repeatedly into my shoulder. I kid you not. This is how it felt. I watched TV in my bed. I could not hug my children. I could not talk well. I thought i was dying. I knew right then and there, that if it was a terminal cancer I would want to die right then. I knew without a doubt it was wrong to make a person suffer like that. I knew it. It was hideous and cruel. Every second. Every breath hurt. Each moment ticked by like a snail crossing a highway. It dragged on and I suffered more.

So....when someone says that Hogkin's is so curable, don't forget that this is what we want for every cancer, but it doesn't mean that it doesn't cause pain and that it doesn't hurt and that people don't die from it, because they do. Don't minimize it. I felt at death's door and they told me I wasn't going to last 3 weeks without treatment. My life was saved by these chemo drugs. My daughter's life was saved as well. We are here because of it and I'm thankful for it. I have met new people recently diagnosed with Hodgkin's and they get the same thing. We are thankful for the cure rate but it still hurts and it's still scary as hell. Remember that.


Elena said...

I'm newly diagnosed, and I so get the 'oh it's curable' thing. It so DIMINISHES what you're going through. It's like they think you don't have cancer at all. It makes me insane.

Loving your blog.

Sandi said...

EXACTLY Elena. It diminishes it. It somehow does make you feel like they think you don't "really" have cancer. Um yes. We do. We just have/had a cancer that has come a long way in how it's treated. It irritated me and still does to no end how people seem to blow it off after hearing the cure rate. Glad you understand.

Anonymous said...

Cancer is cancer and by God's grace and good medicine dose anyone make it. The pain and fear it's all the same with any cancer I'm sure, I couldn't even imagine what you went through mentaly trying to stay strong for your family and being so affraid on the inside,and fearing your unborn childs life as well, you did it and to me your the strongest person I know...:) not just because you beat it, but because you put your unborn childs life ahead of your own and did not give up, you suffered and endured it for the love of your children and did not let it take you mentaly that's the hardest part I would think and you shared your story and brought us a step closer into what it must of been like and also encouraged others never to give up, it is a battle and you are an inspiration.