Wednesday, February 17, 2016


Wow, no post since October 2009?  Six years and four months???  Where has the time gone?  I guess I was having so much fun I didn't notice.

I have thought many times I needed to put up a post and then didn't.  Not that I'm a procrastinator or anything, but that is ridiculous.  Tonight I got an email from a person that might be newly diagnosed with CLL.  He will find out later this week.  The email was rather tentative but basically wanting to know if I was still alive.  When I mentioned it to Cheryl, she said she has felt for a long time I really need to start writing on here again.  I guess I can spend a little less time on Facebook and playing games and devote a little bit to posting here sometimes.  By the way, the fellow that contacted me with the email connected with me on Facebook and we spent a long time chatting back and forth in private message.  I hope I helped him some.

There is no way I can cover all that happened in the last six years so here is a wrap up:


1. My mom passed away four years ago at the age of 96.
2. We welcomed grandchild number five, a sweet boy named Jack who just turned six two weeks ago.
3.  The three oldest grandkids, Jonathan, James, and Holly, all graduated from high school.
4. We welcomed a great grandson named River.  Jonathan's little boy.  A cutie not yet a year old.
5. We moved to upstate NY three and a half years ago.  I know, crazy, right?  I have a brother in Manhattan, and one in Endicott.  Cheryl has seven brothers and sisters in the area where we moved.  Some of them not doing so well health wise and it was time to reconnect and help out where we can.  They help us, too.  We moved to Clinton, just outside Utica.
6. We travel to Texas a couple of times a year and also spend time each year in Myrtle Beach in February and March.  (we are in Myrtle Beach now)
7. Cheryl and I celebrated 48 years of marriage this past December.
8. We still have our cabin on the small lake.  But it is for sale...sort of.  We just don't push it too hard.
9. I rediscovered that I hate snow as much as I did when we moved out of NY in the 1960's.


1.  I had three stents put in my heart two years ago.  One blockage was 100% and 90% for the other.  Still watching a couple around 60%.  No heart attack, thankfully, just angina. I was awake through the whole procedure and found it interesting, even when they were having trouble.  Didn't even feel nervous. My heart was acting up after and they wouldn't let me go home until I had "P" waves.  Still didn't let me go when I waved my urine bottle at them.
2.  Also two years ago, I had surgery on my right leg twice to get rid of squamous cell skin cancer.  Didn't get it all the first time and had to go back in "deeper and wider."
3.  Again two years ago I had my chest port removed because it stopped functioning after nine years.  They were supposed to put a new one in at the same time but it took over an hour to get it out and they said my body was showing signs of a lot of stress, so they didn't put the new one in until a month later.  That went fine. (Five surgeries that year)
4.  Had cataract surgery on both eyes last year - and I still wear trifocals! But I do see better at night.
5.  I continue with my IVIg infusions, but now it is only every two months as the IgG levels are holding longer.
6.  Arthritis continues to get worse where I have to use a cane sometimes.
7.  I had four rounds of chemo in 2014.  This time I had Rituxan and Bendamustine (Treanda) that was approved for CLL in 2008. I was on blood thinners at the time and my platelets were low, so we didn't do one of the newer treatments because of possible internal bleeding.   That chemo regime knocked me on my butt more than the Cytoxan, Rituxan, and Prednisone I did the first time.  We did it because my lymph nodes exploded.  My neck got so big it was difficult to turn my head.  Many internal ones were 7, 8, and 9 centimeters in size. I only did four rounds for several reasons:
    a.  The nodes went down quickly.
    b.  As I said, it was kicking my butt
    c.  It was knocking my blood counts down too low.
    d.  I told the doc I was too busy to do more.  Really. He said, "OK, we aren't trying to cure it, just knock it back and we have.
    c.  I continue to get fatter.  I have gained 112 pounds since diagnosis in 2005.  I try to blame it al on steroids, but eating with little physical activity has a lot to do with it too.

So how am I doing now?  My blood work last month looked the best it has since diagnosis.  My red count had been quite low since treatment and that reached normal.  White count and platelets also came into normal range.  So the leukemia is behaving.  Not so much the lymphoma part.  My neck nodes are starting to get quite bulky again. In mid October last year they came up quickly and my local onc suggested chemo again.  I said not yet and he said OK he would follow my lead.  The nodes continue to grow some but much slower now.  Also, I will check with my expert specialist at MD Anderson, Dr. Wierda, before doing anything.  We had been planning to do Ibrutinib (Imbruvica) this next time, but now I am not so sure.  It may not be the miracle drug it seemed to be at first.  Although many people have had great results, more are beginning to have complications.  In fact, an oncologist I saw today in Myrtle Beach (for port flush) said she has stopped using it for now.  She had two patients with very severe complications. And two more with serious bleeding issues.  One was in ICU for three months, finally got out a few weeks ago and just went back in this morning.

By the way, that oncologist I saw today said I don't look 70.  If we lived here in Myrtle Beach permanently she would be my doctor.

Well, that is enough for now.  You are sort of caught up on what has been happening with me and you know I am still alive.  See you in six years.... No, I will try to post more if anyone still reads this.


justme said...

Read it! Keep posting, John. :)

Mr. Freer said...

Interesting post!

Bonnie said...

Great synoptic skills, John. Please keep 'em coming. Hoping the lymph nodes wane.

Marco said...

Just found your blog via a post from 2007 and I have to admit I wondered . . . and then I saw this post from a few days ago :)

I was diagnosed with CLL a couple years ago, have some neck swelling but it's actually gone down a bit, otherwise I'm in great shape, much better shape now that I was ten years ago. I've managed to avoid chemo thus far.

Best wishes and blessings to you John, let's beat this thing!

Dave & Chris said...

Came across your blog after searching for side effects of FCR which i'm going through.
Might even be following you on one of the FB CLL sites or web pages.

Mithy said...

I'm glad you have had the courage to put yourself out there so strangers from across the world can learn your story haha
Hope you are doing well John!!