Anniversary?

Well, October 25th I had my 3 year anniversary on the Clinical trial drug Imbruvica.  At my doctor's appointment he said that based on my physical exam and blood work he now considered me in Clinical Remission.  This does not mean that I am cured, but means that without more extensive tests you could not tell that I have CLL.  This pretty good news and the end of my short report.

For a more medical explanation, when you are treated for CLL you either get a response from the drug, or not.  If you get a response but you still have lymph nodes or spleen that are palpable, have blood numbers out of normal range, or have any 'B' type symptoms (fatigue, weight loss, night sweats, etc) then you can have what is called a Partial Response or PR.  Because the drug that I am on is very slow acting, I was in a PR state for 3 years.  At my last physical exam I showed none of the symptoms that would be included in a PR, so he declared that I was in Complete Response or CR.   According to the Trial data only about 14% of patients in my category get a CR, so I am very thankful for that.  I am hopeful that I will continue on this Clinical Trial (which has an expected term of 5 years) and if and when I need more treatment there will be something even better out there.  The strides that they have made in just the last 3 years have been truly amazing.

Since I haven't posted for about 6 months  there has actually been quite a bit going on in my life in that short period of time.  In my last report we just had our fifth grandchild, Otto.  Since then we have had two more grandchildren, Maebel Olive Evans (parents Jeff and Kristen) and Liv Marie Evans (parents Matt and Randi).  We are now up to 7 grandchildren, all 5 and under.  Quite a brood.

Donna and I went to Austin in October to celebrate my Dad's official 90th birthday.  We had a small celebration with dad and his wife Lois, my sister Rebecca and her partner Cherese, and some Austin friends of my dad's.  Then the first week of November we had the REAL party at our house of all the family and had about 25 family members here for that.  It was the first time my Dad had seen 3 of the new grandchildren, so it was special for a number of reasons.

This last few months have not been the happiest of times.  2 months ago, within two days of each other, we lost two warriors in their fight against blood disorders.  Peggy, who I had known for over 30 years at the City of Long Beach, lost her courageous battle with MDS (Myelodysplastic Syndrome) and Dylan, the 28 year old son of my long time barber, lost his battle with ALL (acute lymphoblastic leukemia).  Both had fought for over 2 years and it was a very tough to see them both succumb to their diseases.  RIP Peggy and Dylan.

I just read Tom Brokaw's book A Lucky Life Interrupted and have to say that it is an extremely well written book that I can really relate to.  I told Donna that the introduction is almost a word for word explanation of how my CLL has affected me personally.  Figuratively (not literally), I could have written those words.  For those of you not familiar with his book, it is his journey with Multiple Myeloma, which like my blood cancer, Chronic Lymphocytic Leukemia, has no cure, but can be treated.  It is a very well written book by someone that we are all familiar with.  He not only talks about his disease, but also the state of our broken medical system, the high cost of drugs, and the lack of communication even between his team of world class doctors.  It is a good read for anyone who has been affected by cancer or knows someone who has been affected.

We have been extremely busy since Labor Day, and have gone on 10 trips.  We have been to Berkeley, Montana, Austin, Kauai and Maui, most of them pleasure, but some have been in conjunction with my participation in the non-profit organization  The CLL Society.  I have been to Madison, WI, Charlotte, NC and Tampa, FL.  It looks very promising that we will have CLL specific support groups in those areas.  At the CLL Society we are doing a lot of outreach to other cities to try to establish groups there.  I am still leading the Orange County Group which meets monthly at UCI Medical Center and we now have a mailing list of over 100 patients and caregivers, and usually have between 20-30 attend each month.

Nowhere in my original diagnosis in 2000 did I expect to be blessed like I am.  I am blessed with having a wife that literally saved my life by doing research and prodding.  When I was diagnosed I never thought I would see all 4 of our children married, and 7 wonderful grandchildren.  I didn't think I would see my Dad hit his 90th birthday (and Donna's parents hit their 98th and 97th birthdays).  I am blessed with wonderful friends, some of them lifelong.  But I am cursed with having golfing buddies that always ask how I'm doing, but never stop with their incessant comments about how bad my golf game is.  That 5-10 year life expectancy at diagnosis is LONG GONE, and here I am working on 16+ years, with many more to come.