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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.

Monday, April 5, 2010

At home recovering

Greetings,

After four weeks in the hospital I am now home and overall doing well. I am slowly gaining strength in my legs, which is one of my primary concerns at the moment so that I can get out more and do more. I am going in to the oncologist in Denver weekly for a few weeks of Rituxan infusions and blood checks. My platelets were really low while in the hospital and I also had to receive red cells so we are keeping an eye on that. Once the infusions are finished I should be able to have the PICC line taken out of my arm. Like the Hickman catheter, it has been wonderful because I was getting very bruised from IV lines in my arms.

Nothing else has really changed at home. My wife is kept busy as my caregiver and everything under the roof and outside the house taker carer of person. I try to do the odd little job around the house but wish I could do much more to help her. The boys are doing great and are a help too.

A special thanks to Don for his support and fantastic experience based information too. We share many symptoms and he has been able provide me with great recommendations and Internet links to top grade information. Thanks my friend.

- David

4 comments:

Melissa said...

Sending good thoughts your way.

Anonymous said...

Oh gosh David,

I have been so completely out of the loop I feel terrible. I had no idea what you have most recently been battling. To say it is unfair and unjust after all you have been through seems like a waste of words.

You are such a fighter and inspiration. Your wife deserves a medal of honor as well I know how frustrating it is for you to not be able to help and do the things you want to do. You are contributing by keeping up the fight and being strong. That is your job each and everyday. Never forget what an important job that is. This all will pass and I know you will recover.

In the meantime, keep smiling when you can. Realize you have done NOTHING wrong in all of this and to rest, sleep, eat, and take your meds.

Healing thoughts,
Lea

Amanda said...

Hi David,
I just wanted to say that you have an incredible blog here. Your insight is not only valuable to those who know you or those within the CML community but also to those who, like me, want to learn more about what it's really like to experience CML or go through insensitive medical treatment in general.

I linked to your blog in this discussion on WEGO Health: http://community.wegohealth.com/profiles/blogs/what-is-cml because I think you're an A+ example of a Health Activist and I hope more people will visit your blog and learn more.

I hope you'll swing by our site sometime and consider joining our Leukemia group or Health Bloggers group. Then you can spread the word about great work you're doing while also helping to encourage others who may want to become activists in their own health communities.

Thanks for all you do!
-Amanda
amandad@wegohealth.com

Greg Gomez said...

Thinking of you Bro!

The Gomez Family says hi. Check Facebook when you have time, lots of family pictures and videos to see from us. Also, comments on your page from friends for you.

www.greggalleries.net is online now too.