I am continuing to see SLOW improvement in my blood numbers, which doesn't really surprise anyone. As I might have mentioned before, the Imbruvica works like that. It is a very SLOW acting drug, unlike chemotherapy which mostly has an immediate response. In fact, studies have shown that if you respond too quickly to my drug, you will probably not have as durable response a someone who slowly responds over a long period of time. A fellow CLL'er, who was on one of the first Imbruvica trials, only reached normal blood numbers after 3 years on the drug. Most of my blood numbers are in normal range, but some still are not. I continue to have minimal side effects and am glad that after 20 months that I am still in remission and still responding to the Imbruvica.
But because of my compromised immune system, I am susceptible
to infections and those infections can take a while to clear up. It took about 3 1/2 months for my pneumonia
to clear. Just about as soon as that almost
cleared, I got another infection which took 3 courses of antibiotics to
clear. Then, I got some sort of sinus /
ear infection that took 3 weeks to clear.
All this from a guy who had almost no colds during the 7 year period
from diagnosis till my first treatment.
I will admit I have been rarely sick, even after I began my
treatments. So this situation I have
dealt with for the last 7 months is really rare for me and maybe that is why it
is so frustrating. I also know that I can't blame EVERY physical ailment on the
CLL. I continue to play golf multiple
times / week, and we are traveling once again.
In my last blog post I mentioned that my lifelong friend,
Tall Tom Robertson, was waiting for a lung transplant. Tragically, after over 30 days at UCLA
medical center, they were unable to find a match and he passed away in April. We went to his memorial service in Marysvale,
Utah in May and it was heartwarming to see the love and affection that was
shown by all of his friends and townspeople. He will certainly be missed, but
not forgotten.Some of you may be curious as to what my blog title means. It means that since my last blog post, we had the birth of grandchild number 4, Emma Jeanne Watkinson, born to our daughter Aimee and Bryan. and it also refers to the fact that our daughter Sarah and Kevin are Pregnant and this will be grandchild number 5 for us. What makes this pretty amazing is that 14 years ago when I was first diagnosed, none of our 4 children were married and we had no grandchildren. Based on the AVERAGE survival rates for CLL at the time, I had between 5 and 8 years to live. Obviously no one knew at the time that more advances would be made in the last 5 years than in the previous 50 years. Now there are more treatment options and people are even talking about a CURE, which was unheard of when I was diagnosed.
Last week we went to Berkeley to visit our son Matt, his wife Randi and our granddaughter Naomi. This weekend we celebrate the 1 year birthday of Lois, who is Jeff and Kristen's daughter. It turns out EVERYONE has decided to come in for this event and we will have about 20 family members here for that. Then in 2 weeks we take off for the wedding of Randi's brother in Seattle and from there we venture eastward to Montana to visit Sarah and Kevin for a week.
In May, I had my 10 year retirement anniversary. I can't believe how fast this time has gone.
Even though I have had some minor bumps in the road I can't help believe that I
am blessed to be on this journey. My
friends, family, medical team and faith have allowed me to continue LIVING
instead of dwelling on my situation. I
feel fortunate to be part of a support group for CLL patients and part of a CLL
non-profit organization. I saw some
friends a few days ago that I hadn't seen in 4 months or so and they said that they
missed my updates and had been wondering how I was doing. It is hard sometimes for me to dwell on how
well I am doing, when so many people out there are NOT doing all that well,
even with all the new and exciting treatments.
As my friend 'Too Tall Tom' used to always say, "stay
healthy".
Terry
