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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.

Friday, October 9, 2009

Temporary Disability Retired List update

A couple of days ago I received a letter from the TDRL Board President letting me know they have decided I am to remain on the TDRL because I am still not fit for active duty and my condition is still not stable. I look at it as a free return flight to San Diego where I can visit my parents, twin sister, brother, aunt and some great friends.

I continue to have my set-backs with days I find it difficult just climbing a flight of stairs. Some of my complaints are most likely related to side affects of the antibiotics I am still taking. So I hope to be feeling better once I finish those meds in two days. My white cell counts are still high but a little lower then the last report so the doctor is hoping the antibiotics are winning to fight an infection. But I have a pain in my left side just under my rib cage and I know from personal experience that this is where my spleen would be if it is getting bigger, like it did when I was originally diagnosed with CML. My doctor believes it is most likely my intestines I am feeling and my wife reminded me that the CT-scan I just had should have picked up an enlarged spleen. But I think because I have experienced so many cases of bad news with regards to my health that I now tend to be rather pessimistic.

Anyway, my darling wife has found a new oncologist for me at the Rocky Mountain Cancer Centers in Denver and I see him later this month. I expect he will order another PCR test to look for any signs of BCR-ABL, to ensure there is no sign of relapse. A negative result will certainly put me at ease.

And even more bad news on the Cox front; my poor overworked wife has been having more problems with her neck. Remember, late last year she underwent two major surgeries; one on her back and the other on her neck, both requiring titanium plates screwed in place on her spine. Well she just saw her surgeon about her neck and the verdict is that the bones did not fuse. So now she must get a CT-scan and most likely have to undergo the surgery again. But this time they will have to go in from the back of her neck and screw in another plate. I really feel for her because she is doing so much around here that she cannot afford to be in so much pain. Lately she has been caring for our two boys and for me almost full time. I love you honey and we are all thinking good thoughts for you.

Well that is it for now. I will probably post again after my oncology appointment or after I receive my PCR results.

~David

1 comments:

Anonymous said...

David-

What a journey. I am with your wife on the fact that those CT scans pick up EVERYTHING and more things than they should. There is much discussion that they pick up nodules and groups of cells that get us all worried but 5 years ago we woul dnever have seen because technology is almost too good. I bet it is your gut.
I am happy to hear that you will see your family even if it is not under the ideal circimstnaces. You will get through this.
I was tapering my pred and all of a sudden the good ole GVHD of the GUT has come right on back for about two weeks. The taper schedule is out the window, back on entocort, and let the wild moods of pred resume. Good luck to all around.
You are doing an amazing job. Just when we think we have one thing "beaten" or dealt with- it seems to come back and say "not quite yet".
I know you will get a great PCR result and I think that should ease any worry you have. You are coming up to two years- a HUGE landmark!!
xo-Lea