Thursday, February 19, 2009

One Year

Sunday was my birthday. I kept it quiet and with the family. It was about the best day I have had in the last year. This is the anniversary of my being diagnosed with multiple myeloma. I wasn't sure how I would feel. What feeling would come up. I just wanted to be in the moment.

On Sunday night, I woke up with an incredible feeling of accomplishment; I did it! I did it! I kept saying to myself as a cried tears of relief and gratitude. I said I would beat the cancer and I did. I didn't do it by myself though.

As I felt my self grow weaker and more sick, I got into action. I talked to Adam and other freinds to let them know what was happening and asked for their help. I knew I was asking a lot. Within days a support group of more than 100 freinds family and neighbors was mustered. I was surrounded by a team of folks that were going to take care of me and all of the responsibilities that I wouldn't be able to take care of myself. I felt incredible gratitude.

With the security of knowing everything was OK I went into patient mode. I went to countless doctors appointments. I started taking drugs that are essentially poison. The pain I was experiencing grew greater and greater. I slipped into a fog of morphine use. I was furniture in the room instead of a contributing member of my family. I was a liability. I got nauseous and started loosing weight. Leaving the house became a major hardship and a trial of pain. Walking to the bathroom was my limit, sometimes more than I could do.

The whole time the Chickenhawk was taking care of me. She was talking to the doctors and understanding what they were saying. I just couldn't do it. She took me everywhere. She cleaned up my puke and poop and piss. Her family rallied around her. Her Mom and Dad came and ran our house for weeks, feeding the kids, taking them to school. Her Sisters either came to help or took the kids for weeks at a time or both. We missed our girls terribly.

My community stood up around me. We had a work day in which 50 people showed up to do all the yard work and projects that I would have done for the next year and cleaned the house from top to bottom. So much happened in that one day it was amazing. Friends brought meals, planted the garden with herbs to ease the pain, made music, made art, made bread, just sat with me while I rambled my morphine/ nausea/ pain ramble.

The original treatment plan stopped working. The doctors recommended plan b, a stem cell transplant. We began the long process in June. I started chemotherapy. Long painful drives to Stanford, overnight stays in grungy motels or hospital beds became the norm. I'd get filled with poison and drive four hours home. The nausea got worse. I puked all the time. I lost weight. I got hospitalized. Then I got more Chemo and the whole thing started again, home, sick, hospital I cant remember it all.

Then came the actual stem cell transplant. For the first three weeks I was really bad. Almost died. Weeks were like days. Minutes felt like hours. KT, Adam, Billy, David, Mom and the Chickenhawk stayed by bed the whole way through. It was a trip to hell. I walked out the hospital 2 months after going in.
My body was wasted, I could barely walk. I had to have supplemental O2. My dad sat with me in the medical apartment and patiently took care of me. We went for walks... up to 100 yards!

I finally came home. I was still a liability but I was getting better. I had to re-learn so many things. I was really weak. I was with my kids! I started driving again. I got sick. I got better with out spending the night in the hospital. Then I got sick again, and recovered again. I started feeling good. I found out the cancer was gone! I started getting off of the drugs and my brain came back. I walked out of the fog. I started caring about things other than my health. I started exercising my body. I got stronger. I slept less. I spent more time with my girls. I felt love. I feel love. I made it. Thank you, everyone that helped me. I couldn't have done it without you.

Thursday, February 5, 2009

Good Intelligence is Key

Well... three weeks since I last posted. Lots of stuff happening. First I want to lay some cool stuff that I've come across on ya . Both are NPR reports. One gives a lot of hope and the other just makes me say wtf? Check them out tell me what you think.

Morning Edition, January 29, 2009 · The chances of surviving cancer have been increasing in recent years. One of the most dramatic success stories in cancer care involves a little-known cancer called multiple myeloma that had been among the deadliest types of the disease. Listen or read here: Link

When I was in school this is the last type of illegal drug we had on our minds.
Morning Edition, February 5, 2009 · They're commonly called "smart drugs" or "study drugs." Scientists call them "cognitive enhancers." Drugs like Adderall and Ritalin, generally prescribed for attention-deficit disorder, are increasingly being used by college students to help them study despite serious side effects, researchers say. Link

Now you not only have to worry about the dopers in the peleton but you have to look out for them in the cube next to you. They really have a pill for everything now.

Today I am sitting around waiting for my oncologist to call. Yesterday he called and left a message. "Your lab results are in and I need to talk to you as soon as possible." was his message. It is now 24 hours since he called and I have left him 4 messages since but no return call. What is up with my test results? I am not too worried because my mole at Kaiser has gone into my records and found the test results. Something in there is a bit askew but we (my mole, the Chickenhawk and I) don't know how to interpret the numbers on the test. The cancer markers are still in the "best we could hope for range." So I am chillin'.

If I didn't have a mole inside the Kaiser organization gathering intelligence I would probably be pushing the threat level into the Red range right now. Good intelligence is key in the war against Kaiser. If I don't hear from them by 2:30 I am going to make a frontal assault on their voice mail system in an attempt to talk to a human. You know, they discourage that. Talking to humans...
Post script: the doc called at 2:10. everything is fine.

I am doing great. Dennis Eagan has been really helping me a lot. With his instruction I have regained a lot of strength and balance. I am walking almost normally now and getting stronger. I still need to make more time to exercise but it is working out. I am still having troubles getting off of prednisone and it is big pain in the butt that I don't care to elaborate on. Everything is good right now and I am healthier and feel better than I was a year ago.

BTW I have discovered Facebook and am enjoying it. Come find me there and check in.