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Tag Archives: Chronic Myeloid Leukemia

Feeling Good. New Goals in Life

11 Friday Oct 2019

Posted by Tim Hughes Living with CML in Cancer, Leukemia, Photography, Weight Loss

≈ 6 Comments

Tags

Cancer, Chronic Myeloid Leukemia, Exercise, Fitbit, Leukemia, Low Carb, Weightloss

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As the title says I’m feeling pretty good right now.  My breathing is better, I’m taking iron infusions so my energy is better as well.  So, with that being said, I will be starting on a three month diet beginning on Monday of next week.  I have a plan, one that includes low carb, regular exercise; mental as well as physical.  I’ve joined a neighborhood gym that will help me during the cold and rainy days that are sure to be coming.  I will post regular updates here so I can keep up with my progress.  Also, I’m on Fitbit so if you would like to send me a request, you can see live results.  My email address in timhughes1963@gmail.com

See you on Monday!!!

 

Living With CML To Be Or Not To Be

03 Thursday Oct 2019

Posted by Tim Hughes Living with CML in Cancer, Disability, Family, Leukemia, Photography

≈ Leave a comment

Tags

Bone Marrow Transplant, Cancer, Chronic Myeloid Leukemia, CML, Disability, Oncologist, Tests

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As a child I used to love to ride roller-coasters.  I would ride for hours just to ride different coasters.  As I got older I out grew my fascination with coasters because my stomach couldn’t handle going upside down and being bounced around as much.  I guess riding a coaster is the best way to describe living with CML. It is for me at least.

The last few months have been just that, a roller coaster.  Since I was diagnosed in February of 2014, I’ve been on three different medications.  I had to change  because either the medicine quit working or it caused fluid around my heart and lungs.  In January of 2016 I had both type A and type B flu as well as pneumonia along with fluid around both of my lungs.  I was admitted into the hospital where they did all sorts of tests.  They eventually removed just over two liters of fluid around my right lung.  There was at least that much or more in my left lung but they would not remove it due to risk of infection.  It was during this time they took me off the medicine that they thought was creating the fluid.

In March of 2016 I was placed on a different drug and up until August of this year, I haven’t had any side effects of the drug.  But, unfortunately due to becoming severely anemic, and after having several tests done, they found that I had a bleeding ulcer.  Oh, but it gets worse.  The medicine for the ulcer reduces the effectiveness of the CML drug.  We were told that it didn’t but it did.  During the first several months after taking the ulcer meds, my CML numbers started increasing.  After several months of this my oncologist decided that he had done all he could for me and that he was referring me to a bone marrow transplant team.  These were to be the darkest days of my life.

About the same time I was diagnosed, another young lady in my community was diagnosed with CML. She didn’t like the side effects the drug was causing so she stopped taking the drug.  Her CML escalated and she had to have a bone marrow transplant.  I followed her on Facebook through her whole ordeal.  She was in the hospital for six long weeks having this procedure. I remembered her ordeal when I was told that I would be having the same thing.

The doctor that I was sent to was not on the transplant team.  The hospital he is associated with is one of the best cancer research centers in the US but the doctor had a lot of growing up to do.  He was fresh out of college. In fact, I have a son that is not much older that he is.  My other oncologist has over thirty years of experience but like I said, this doctor is fresh out of college and from another country to boot.  Nothing wrong with that though.  What this doctor had in knowledge, he lacked in experience.  I saw this doctor about 4 times and it was enough to know that there wasn’t going to be a 5th.  He did have a couple of suggestions that I did get out of our visits.  He stated that I was not a good candidate for a bone marrow transplant and that I was probably taking way too much medicine.  He also mentioned that I was supposed to be taking my cancer meds with food, which at that time I wasn’t.

So, as of today, I’m back with my previous oncologist, my numbers are back where they need to be and most everything is where it needs to be.  I am working on getting disability. I have a hearing in January.  I’ve had to get a handicap place-card because of gout in my right foot.

So, as you see, my life has been somewhat of a roller coaster. It’s been up, then down then on the up side again.  I’ve been reading books and trying to listen to some easy jazz music just to help me relax a bit.

Sorry for the long post.

 

 

 

Update 12/17/2016

17 Saturday Dec 2016

Posted by Tim Hughes Living with CML in Cancer, Family, Photography

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Tags

Chronic Myeloid Leukemia, Hospital, Leukemia, Merry Christmas, Sickness

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It’s been over a month since I’ve been in the hospital.  I count that as a good thing.  I’m still very fatigued, short of breath, these nitro patches are giving me headaches and I get fairly dizzy when I stand up from a sitting position but other than that I’m feeling pretty good.  I have all my kids home at least for a little while so that’s making me real happy.

MERRY CHRISTMAS EVERYONE.

365 Day Photo Challenge 356/365 “To Be Pain Free For a Day”

21 Monday Dec 2015

Posted by Tim Hughes Living with CML in Photography

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Tags

365 Day Photo Challenge, Cancer, Chronic Myeloid Leukemia, Chronic Pain, CML, Cycling, Diabetic Nerve Pain, Pain Relief

I was thinking earlier this afternoon when the last time I had a day that I went pain free.  Yesterday.  I would have to say yesterday I was relatively pain free for a day.  Lately it’s been my feet giving me problems and now my kidneys.  But yesterday I was pain free because I didn’t have any pain in my feet and my kidney didn’t hurt.  Today, however, my feet were barking toward the end of the day but my kidney remained calm and pain free.

As I sit here whining about my pain, I’m reminded that there are a lot of people that are worse off than I am.  There are days that I hurt, a lot.  But, like yesterday, I didn’t have any pain whatsoever.   Some people can’t say that.  They have to live with chronic on a day to day basis.  There is no pain medication that can give them any relief whatsoever.  Knowing this makes me feel like a heel complaining of my insignificant pain when on most cases I can take a pain pill and for the most part feel better within thirty minutes or so.  There are those that medications can’t do anything for them.  I can’t image that.

I’ll say a prayer for all those in need of pain relief and I’ll include myself in this prayer.

“Life Goes On!”

 

365 Day Photo Challenge 34/365 “Good News”

03 Tuesday Feb 2015

Posted by Tim Hughes Living with CML in Photography

≈ Leave a comment

Tags

365 Photo Challenge, Alabama, Birmingham, Cancer, Chronic Myeloid Leukemia, CML, Oncologist, Photo, Photography, Railroad Park

Good news to share tonight. I heard from my oncologist today. He said that things looked better this time around.
There are three tests that he performs. All three tests started off extremely high. Two of those test for the past few months have come back with no trace which is what we’re looking for but one of these test is being somewhat stubborn. Six weeks ago the results were .22 which had went up from .134. The last test showed .0015 which is excellent compared to 138 nearly a year ago (normal is between 5 and 10). We’re still looking for zero. I go back in 2 months for another round of tests. Thanks for all your prayers and support.

The above picture is from Railroad Park in downtown Birmingham, Alabama.

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