Thursday, January 15, 2009

When North is South and South is North

I have written before about the insults of cancer. I.V.s , needles, poop tests, pee tests, anything that comes out of your body, they’ll collect it and test it. I have to take about 60-70 pills a day at four different sittings. I say sitting because you can’t really do much else when you’ve got a little dish of 16 pills that you have to gulp down. It takes concentration to dole them all out in the right amount and then take one at a time. Pill goes to tongue, water glass comes to lips, surround pill with water, swallow. Sounds simple right? Well once in a while concentration gets broken at the wrong moment and things can go really, really wrong. So I am cautious about my pill taking. You would be too.

In the past I have swallowed a little wrong and the pill scrapes my throat on the way down. It feels like a sore throat for a couple of hours. About once a day the pill just goes down wrong and I get indigestion and burps for 15 minutes.

But the worst, the absolute worst, is when a pill goes up your nose. That’s right it has happened three times now, out of several thousand pills I have consumed in the last year. It happened tonight; I was all prepped: pill on the right spot on the tongue, water in the right proportion, and the pill was on its way. Suddenly to my left someone says something that I must turn towards and that medium sized phosphorus pill goes up my right sinus hole. You know, the little tunnel that connects your mouth to your nose? It is the reason that 6th graders at the lunch table can make their friend’s milk come out of their nose if they tell a joke with perfect timing.

So the little pill goes up my nose hole and gets wedged. It is painful instantly. Stupidly, the first thing I did was blow my nose (wrong direction) thereby wedging it farther up there. Then we ran for the nose flusher. The nose flusher is one of those cold prevention gimmicks; a little plastic 2oz. squirt bottle that comes with little packet of special medicine (salt). It has a top that fits in your nostril and you squeeze the salt water in and flush the boogies out. Or in my case the Urocit K potassium supplement tablet.

The first time it happened I was home alone and had no idea what to do. All I knew is that my sinuses were on fire and something was pushing against my brain right behind my eye. After a few minutes of whimpering I remembered the sinus flusher. I went looking for it but could not find it. It is hard to look for things when you are in agony. Luckily the Chickenhawk had her cell phone with her AND knew where the thing was.

This evening she saw the look on my face and went and got the flusher for me. I flushed and I flushed but nothing would come out, well not the pill anyway. I did start to feel relief so I took a break and finished taking all my other pills. As I did, the pain welled back up and I went back to the flusher. After a few more vigorous tries, the partially dissolved pill fell into the back of my throat and the pain was gone.
Another day in the life…

Thursday, January 8, 2009

Community Through Suffering

Well it has been a lot longer than I would have liked… apologies. I have been working on another writing project that has dominated my time. It is over now and I am glad to have it done and very happy with the outcome. I was writing a letter of recommendation for a friend of mine who is applying to Stanford’s MBA program. I am really proud of him and hope that gets in to that very competitive program.
I thought I would share what is on my mind lately. I have been a bit of a hermit. I’ve really only spent time with my immediate family for the last couple of weeks. I am not sure why but I have wanted to keep things low key. The people that I have talked with have all been very complimentary with me about how I have handled the last year. It has been nice but at a certain point I get uncomfortable with a lot of praise. The fact of the matter is that I did what anyone else would do in my position. I fought with everything I had. I think the only thing I did differently than the average cancer patient is that I shared as much as I could. I stated my goals almost as soon as I got diagnosed. I wanted to share the experience with as many people as I could and bring them in to it as much as they wanted to go. I got a real benefit from doing that. In fact I think it saved my life. The people that got involved with my illness stepped up and gave help of all sorts. It was an amazing showing of support. Everyone that got involved, over 100 people, contributed in the way that they knew how. Some folks worked on our house, some stayed with me sometimes for days and days so that the ChickenHawk could get out, some watched the kids, a garden was made, some brought meals, some came and ran our house for a week or two, some just gave us money, countless tasks that we just couldn’t get to were taken care of.
My Cancer became a community event in the Coloma Lotus Valley with many hands making light work. We all did it we all got me through the cancer. The Chickenhawk and I did the heavy lifting but we all did it. When I was in the hospital during the dark days of the transplant, I had a poster in my room. It was an enlarged group photo from the burrito party that we threw right before I went into the hospital for the BMT. There are about 60 people from the community in the picture. It made me feel really good. When I was deep in the pains of cancer, I would look up at that photo and feel the warmth of all the faces smiling at me and supporting me and telling me to come home. It really worked, I knew that I was loved and supported and I would redouble my effort at whatever I was doing at the moment. It was a group effort that got me through. So if you were one of the folks involved in the whole Spencer has Cancer Process, I want to say thank you for your help in saving my life.
The Latest Update:
I am continuing to feel better. I have been tapering my prednisone dose by smaller amounts and that seems to help with the withdrawals. My legs are working really well. I am starting to walk pretty much with a normal gate. My lungs are clear but still impaired. I am doing yoga, riding the stationary bike and doing some resistance workouts. I am still dealing with major fatigue, I slept 13 hours the night before last. I often just shut down and snooze so no long drives… The pain in my ribs and shoulder is almost gone.
I am starting to think about going for a bike ride, I wonder if I still remember how or will it be another thing I have to re-learn.