Norm (Lucky),
I enjoyed your interesting letter. I have been monitoring this site since 2009
when my husband (not an internet enthusiast) was diagnosed with CML. I don’t
remember ever seeing your story before. You certainly have had a blessed life.
Sorry to hear of the loss of Mr Hans. They become a part of the family. I
know you will enjoy Buster once he gets acclimated to his new home. You didn’t
say if he is a puppy, but his devouring of books leads me to think that. I
think you should get to retirement as soon as possible. It is great! We wish
we had retired a bit earlier. We had more places we wanted to go but when
Wayne hit 70 his health went over the cliff. First it was the CML thing. Two
months later he was dx’d with afib (heart irregularity). He had diabetes for
years before this. Then it was the eye thing, very similar to what you went
through. Had shots in the eyes for months. Then cataracts removed, followed
by detached retina each eye. Then had bleeding in the back of the eye. Five
eye operations in less than a year. The result of the bleeding took the sight
of one eye and the other eye has blind spots he has to try to see around. He
is legally blind and can no longer enjoy his hobby of building model trains and
scenery. I cannot believe how he has accepted his limitations and still is
eager to awake each morning to see what the day brings. We have just been
blessed with our first 2 great grandchildren, 2 boys 2 months apart. We enjoy
seeing them grow and the progress they are making…..kind of like watching
puppies play. Haha. Wayne is doing well in Bosulif, his third TKI. Allergic
to Gleevic. Sprycel worked well for about 3 years but he had to get off of it
as it caused pleural effusion. He doesn’t have many bad side effects other
than skin eruptions and mild gastric disturbances. His lack of eyesight is his
worst problem. Between the two of us we have battled cancer 3 times:
prostrate and CML for him and breast cancer for me. And because he worked out
in the sun most of his life, he now has numerous skin cancers. But we fight
them as they appear. Sounds like a lot of woes, but we are thankful each day
we wake up and still have each other. We wish you the best and hope that you
again reach remission.
God bless and keep you.
Joyce in So. IL
> On Sep 10, 2016, at 10:14 AM, Norm <[email protected]> wrote:
>
> Just wanted to check in with the group.
> I miss Millie too. We both owned dachshunds.
> We lost Mr. Hans to lymphoma earlier this year which was one of the hardest
> things I have ever had to do.
> It was the first time in my life that I had the responsibility for ending his
> suffering. The vet was just awesome with his gentleness, understanding and
> care. Mr. Hans was 12.
> It was harder than making funeral arrangements for my mother, she was still
> living at the time which makes it easier I suppose.
> My mother had a great sense of humor. When we returned to her hospice care
> room she woke up and remarked that we were not gone long.
> She had a great laugh when I told her that all they wanted to know was paper
> or plastic.
> We got a new dachshund from a rescue organization. His name is Buster and he
> seems to like reading. He has devoured about 5 books from our coffee table
> and tears through the pages. I really liked some of those books and he
> thought they were quite tasty. Bad Buster.
>
> For those that are new or do not know my history:
> I was dropped on my head when I was a baby and cracked my skull.
> When I was in the fourth grade, I rode my bicycle into an intersection and
> was hit by a speeding car driven by a 14 year old girl that was being chased
> by her brother. She hit me then a tree. The tree died.
> I t was a teenager during the late 60s and early 70s.
> I lost a kidney to cancer in 99.
> Diagnosed with CML on April fools day 2003 with a WBC of 250,000. Started
> Gleevec and chemo with apherisis.
> Remission until the fall of 2004.
> Entered a phase 1 clinical trial for AMN107 which became Tasigna in early
> December. My blood counts bottomed out and the drug was withheld for about a
> month.
> January of 2005 I entered the blast phase and the drug company allowed the
> doctors at MDACC to restart the drug.
> Had to have blood and platelets infused a number of times before my counts
> started coming back up.
> While in the hospital I determined that one eye was not as bright as the
> other and found out I had cataracts which turned out to not be the cause but
> it was an issue with my retinas.
> I saw 5 different eye specialist and the best they could come up with was a
> leukemic cell intrusion into my eyes. I had radiation treatment on my eyes.
> It turned out it was not a leukemic cells issue but wet macular degeneration.
> Started Avastin shots in my right eye and by that time had lost my central
> vision in my left eye due to the scarring from the leakage.
> Vision is now fixed with contact lens correction of 20/400 left and 20/200
> right. I still work, but do not tell anyone I am still driving (much better
> than those idiots on their cell phones texting I should add). I should
> probably change my nickname from Bubba to Lucky.
>
> I played a lot of golf earlier this year, I know a blind golfer but I love
> the game, until I got severe tendonitis in both arms. It was my own fault for
> not warming up and stretching and thinking I am as young as I think and not
> as old as I am. I can still break 90 and almost broke 80 on a day the putts
> could not miss the hole. beats me.
>
> My son is home from the Marines after 4 years and achieving the rank of
> Sargent. He is now in college part time to get his GPA up so he can transfer
> his credits to a four year college. I am hoping U of H, go Cougars.
>
> I apologize for such a long post but I try to keep up with all of the groups
> posts. I have been watching Jeanie's progress and pray for her and all the
> group. We both enjoy cruising so we have more than CML in common. I wanted
> to visit Millie when I was visiting my brother in law in Pittsburgh but the
> time and distance did not work out for us. I would have loved to meet her in
> person. She really enjoyed quilting and chatted about the big quilt
> convention here in Houston as well as our dogs.
>
> I have been on Tasigna for almost 12 years now. My doctor says to thank God
> and I do. It is great to have a doctor that understands and knows that
> miracles do happen and he is a tool of God.
> I feel blessed that circumstances occurred that had him take over my
> treatment from one of the other doctors on his staff.
>
> I still do not understand why God has taken such good care of me and kept me
> around. I suppose somewhere along the way, somehow, I will have made a
> difference.
>
> Your posts are inspirational with all that each have been through. Having
> never been undetectable, I still hope that one day it will be that way for
> me. In the meantime, I am working on retiring and have set a date a couple of
> years out so I can train a couple more people to do what i do.
>
> Y'all keep the faith.
> Norm
>
> PS: Dang Marty, didn't your mother ever tell you if you don't stop doing that
> you will break your neck. Get well soon
>
>
>
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