Wednesday, April 7, 2010

A Beginning, A Middle, And An End

Every story has a beginning a middle and an end. Some stories have multiple volumes or chapters. The chapter of my life that was ruled by CML is at it's end. I still have cancer in my bone marrow, but I'm moving on.

In the beginning I was angry, confused and depressed. Asking how and why this happened to me. Desperately searching for the light of reason in the chaos. I was on disability for 5 months and spent 80% of that on the couch suffering the side effects of the drug that was keeping me alive. I was told it would be difficult or impossible to have children. I cried.

In the middle Wendy and I found out that we could indeed have children. The visits to Stanford for my checkups became less and less eventful. They even got boring. I went back to work part time, then changed companies and accepted a very challenging full time position. There were a couple of weeks here and there where I got so run down that I missed work. Then even those stopped happening. I posted less and less on this blog.

In the end, Wendy and I have a beautiful, healthy baby boy that brings a smile to my face every time I come home from work. I don't think about CML anymore. I've essentially stopped posting things on this blog because nothing interesting happens that's related to CML. My visits to Stanford come every 3 months. I see the hematologist for about 5 minutes. It's boring. I haven't missed work due to anything CML related in 4 months. My BCR-ABL has been stable at a "greater than three log reduction" for over one year.

And so I've moved on. This is the end of my CML chapter. Maybe someday another chapter will be written on this topic. I hope not, but I'm not worried. There is no use in wasting the time I have been given worrying about what may happen with the cancer I carry around inside of me. I grieve for the "cancer" friends I've lost, and I hope for the ones still struggling to find stability and normalcy.

I take my pill every night, and I live my life. There will be no more posts to this blog unless something outstanding happens related to CML, either for good or bad.

And so in the words of my favorite segment of Saturday Night Live: "Good night, and have a pleasant tomorrow".

Monday, February 1, 2010

I Think He's Stable Jim

Finally got my PCR results back from Stanford last week. I'm still at a greater than 3 log reduction and holding. This means that my test results have been stable for about 1 year. There's no clinical meaning to that duration of time but it's a milestone for me.

(And a happy birthday to cancer dog by the way.)

Friday, January 1, 2010

Hello Dylan

I am pleased, excited, elated and happy to let you know that Wendy gave birth on December 27, 2009 at 10:02pm to a perfect, beautiful little boy. He was 5 days early, weighed 8lbs 10oz and was 19.5 inches long. We named him Dylan Leonard.


Both Wendy and the baby are doing wonderful. My family has been in town for a couple of days visiting and sharing this most special time with us. I am still awed every time I hold him what a little miracle he is.

Last night we rang in the new year with our little boy, our first New Years Eve as a family. I'm overwhelmed with emotion just thinking about it. Tonight we're all sitting around my living room enjoying family. We're just so thankful.

Happy New Year!

(You can see more pictures here.)

Monday, December 21, 2009

What Is It With December?

Last December my health care provide ran the wrong test and incorrectly told me I'd reached PCRU (the best you can hope for with CML on Gleevec). We didn't find out till 3 months later at our next appointment.

This December they forgot to run the test entirely. I waited two and a half weeks before calling them for results. When I got a hold of my hematologist's nurse she said that they hadn't drawn the blood for the PCR test. I could come in and have it done when I had time or "just wait till next time".

Are you fucking kidding me? "Next time" is three months away. That'll be six months since my last PCR test.

So I'll be heading in Tuesday morning (tomorrow) for another blood draw so they can run my PCR test.

Tis the season I suppose....

Friday, November 20, 2009

Two Sides, One Coin

A lot of the blogs that I started reading when I was diagnosed don't have many new posts anymore. People's lives return to something close to "normal" or they die. In both cases, they stop posting.

For me things have gotten back to something resembling normal. I've been back at work full time for over 6 months, my side effects have subsided to the point where they're annoying and frustrating but I'm learning to live with them. I still get tired more easily than I used to, my digestive system is unpredictable at best and I'm pretty much always in some sort of discomfort from it, I'm 30 pounds heavier than I was when I was diagnosed and my muscles cramp up quite painfully all the time. All in all, not too bad given what I carry around inside my blood.

The same is not true for all with this cancer however. Over the past year I've corresponded with a woman whose son (roughly my age) was diagnosed with CML and subsequently failed Gleevec. He had a stem cell transplant and had passed his 100 day mark with flying colors.

Then I got an email last week that I will let speak for itself:

I am praying you are still doing well on your CML journey. Sadly, I have to tell you that my beloved son, Robert*, passed away on Friday, Nov. 6. Since I last emailed you, the sharp pains in his back turned out to be relapsed leukemia in his spine. Sometime during chemo, the leukemic cells passed through the blood/brain barrier and formed chloromas. In July, he was unable to have a bowel movement for 3 weeks. We went to many doctors and they all told us there was no blockage and keep taking laxatives and painkillers. We took him into the local ER on July 24 and after a CT scan they sent him home with more laxatives. By the next morning, Robert could no longer walk or urinate. We rushed him to the ER in Hackensack where he had his transplant and an MRI showed a leukemic tumor engulfing his spinal cord. He underwent surgery and radiation treatments. He was only able to walk with a walker after that but he was determined that with PT he would walk again. But the pains started again in his back and the scans showed that the tumors had spread to his entire spine and he was radiated again. He even underwent a donor leukocyte infusion (DLI), but there were still signs of white cell abnormalities. Hackensack told us that they were out of options and suggested we head down to MD Anderson in Houston for an experimental drug trial.

We left here on Oct. 11 for Houston and in less than 4 weeks, he was gone. He never got into the trials. When we met with Dr. Cortez, Robert was coughing and we were told it was due to radiation of his neck area. But it turned out to be pneumonia and he was immediately put into the ICU there. He was also given a round of chemo which I questioned since he was so vulnerable at the time. They tell us he had a drug reaction to an antibiotic and he got Steven Johnson Syndrome, actually TENS, as his body blistered over 90% inside and out. He was transferred to a burn unit to dress his skin daily but the disease took everything from him. He was on a breathing tube the final week of his life. He was blinded, unable to speak, no mobility, just nothing. It was a horrific death but he is at peace now, we are sure. He was taken from us way too soon.

God bless you and Wendy. My wish for you is to have many, many more happy NORMAL years. Hopefully, soon there will be a cure for all cancers.
* I've changed the name at the request of his mother.

My heart goes out to his mother as well as his entire family. It's not fair and it's not right.