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Summary


Chronic Myeloid Leukemia (CML) was the diagnosis I received on November 1, 2005. I went into the clinic three months earlier because of a tightness in my chest, left side, resulting even from a short walk out to my car. Then the week before diagnosis I went in because of a strange bulge in the left side of my abdomen, felt when lying in bed on my back. Turned out to be a rather large spleen, later measured at 11cm below the rib cage.

Since then, my family and I have been through some trying times. And as a Naval Officer stationed overseas in the UK and with family and friends living throughout the world, including the United States, United Kingdom, Ireland, Germany, Japan and Australia, I decided early on that it would be easier to update everyone via a blog than by email or phone.

I tried, and resisted, Gleevec. I also tried Sprycel but I proved intolerant to it because my counts dropped as soon as I took more than 50mg daily (standard is 100 to 140 mg daily). So I turned to a bone marrow transplant, which I underwent November 31, 2007 at the Fred Hutchinson Cancer Research Center in Seattle, WA. I have since been dealing with chronic graft versus host disease (GVHD) issues with my GI tract (resolved), eyes, mouth, and now my lungs. The lung problem is pretty bad as I hve been diagnosed with bronchial obliterans and now have only 42 percent lung function and am on oxygen a great deal of the time.

But not to fear; I am hanging in there, keeping my spirits up and continuing with my life. Through this blog, people have followed my treatment plans through success and failures, various types of medical appointments and procedures, my fluctuating counts, etc. Besides information detailing my own experiences, I also try to include general aspects of CML, various forms of treatment and the experiences of a stem cell transplant.

Saturday, May 9, 2009

O2 Update

I have been home from the hospital now for almost two weeks. I am now on oxygen most of the day and while I sleep. Without it I still get winded walking around the house and especially using the stairs. I am on prednisone steroids again, anti-biotics, and several inhalers. My appetite has improved tremendously because of the steroids and I gained seven pounds in a week. During the first week I was actually getting up at about 1am and eating an entire meal, but I couldn't sleep either. Sleeping a bit better now.

So I am feeling better at the moment but I am still pretty much stuck to the house, needing to drag small oxygen tanks with me if I go out. My insurance company has finally approved home visits from a nurse to monitor my progress. The nurse has also recommended getting me home physical therapy to increase my strength, which I agree will help.

My sister, Lisa, and brother, Stephen, flew out from California to spend some time with me and help out and I have really enjoyed their visit. And my mother-in-law flew out from Ireland for a couple of weeks. It is always great to see Elinor.

I should have another update in several weeks after another pulmonary function test of the lungs. I have received emails, phone calls and cards from so many of you and my family and I really appreciate your kindness.

Here is a picture of me outside my new favorite place.

Posted by David Cox

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1 comments:

Anonymous said...

Hi David,

love, love, love the picture and am thrilled that you are gaining weight. I too enjoyed spending time with you and the family. I can't wait to bring the kids for a visit this summer. Keep the posts coming as we are thinking of you everyday.
Much love,
Lisa, Erik, Shane and Sofia

May 10, 2009 11:28:00 AM PDT

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