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Grayfeathersblog

~ Diabetes, Cancer Fighter, Father of Twins, Kayak Fishing, Lover of Life

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Tag Archives: Cancer

365 Day Photo Challenge 204/365 “Stay Off the Internet!!”

22 Wednesday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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Tags

365 Day Photo Challenge, AML, Bone Marrow Biopsy, Bone Marrow Transplant, Cancer, CML, Leukemia, Photography

https://tchphotography.smugmug.com/Botanical-Gardens/i-M8vWhDb/A

When I was diagnosed with CML, my doctor told me to stay off the internet.  What he meant was don’t do any research on my own because if I did I might get upset at what I found.  He was right.  I did my research and I did find some information that made me concerned.  That’s all in the past now.  My doctor and I are on the same page and we’ve discussed everything there is to know about CML including what could happen if I skipped or stopped taking my meds,  if the drug I’m on decides to quit working or if the cancer decides to take a different route.  I have complete faith in my doctor and I trust him implicitly.

I have the Chronic form of this type of Leukemia.  There are other, more advance forms that are more difficult to control.  Acute Myeloid Leukemia is of course the most difficult form to get under control and often times means a bone marrow transplant, chemotherapy and sometimes even death.  In fact, there is a survival rate of 65% of all AML patients.  Which is not bad considering that just about 15 years ago the survival rate on only about 2%.

Age has a lot to do with being able to survive the processes of reaching remission.  Having to go through a bone marrow transplant plus going through chemo is something that takes a lot out of the body.  The information that I read today stated that people older than 60 years of age the chances of them reaching complete remission (CR) are not very good.  For people who are diagnosed after the age 60 usually are given three to five years even if they decide to go through the bone marrow transplant and the chemo.  Not very promising.

I brought this up because yesterday while on my way home from work I got a phone call from a friend of mine.  Her ex husband’s mother who is 86 years of age was diagnosed yesterday with AML. They have done a bone marrow biopsy and the diagnosis is confirmed.  Her MIL has decided not to receive any form of treatments.  The doctors have given her two to three months to live.

When I was first diagnosed with CML I was told by many of my nurse friends that if someone had a choice as to which form of Leukemia to get, you would want the Chronic form.  After hearing the news of my friends MIL diagnosis I feel blessed to have the Chronic form.  I would rather not have cancer at all but I do and I have to deal with it the best way I know how.

“Life Goes On!”

365 Day Photo Challenge 203/365 “Health Insurance; Love it/Hate it”

21 Tuesday Jul 2015

Posted by Tim Hughes Living with CML in Photography

≈ 1 Comment

Tags

365 Day Photo Challenge, Cancer, CML, Copay, CPAP, Deductible, Drugs, Gleevec, health, Insurance, Medications, Photography

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Health Insurance can be a love/hate relationship.  I am fortunate to work for an insurance company and I get my insurance at a discounted rate but it’s still very expensive. I still have copays and I still have deductibles that I have to meet before the insurance will pick up.  I fill sorry for those that have to fork out thousands of dollars each year for insurance.

Today I had to go pick up my new CPAP machine.  When the lady called me to tell me that I now qualified for a new machine I asked her how much I owed.  She checked her computer and said that my deductible had not been met and that my payment would be around $500.00.  I don’t have $500.00 to spend right now and told her that.

I have CML, a rare form of Leukemia.  My medication is very expensive.  It averages out to be around $600.00/pill.  I take one pill a day and my prescription is for a thirty day supply.  My insurance out-of-pocket yearly deductible is $2500.00 and my prescription costs $18,000.00 a month.  That means that I would have to pay $2500.00 for the first month and the insurance company would pay the remainder.  But first, and the most important thing is that I would have to come up with $2500.00 before I could get my first prescription.  Pocket change, right?  Not for me.  Who has $2500 just laying around?  Again, not me.

A little known fact is that some drug companies want you to take their drug.  So much so that they are willing to pay you to take it.  I am very fortunate to be on such a drug.  Gleevec is the manufacture of the drug that I’m on and they offer a financial assistance program to those that can’t afford the ridiculous prices of the medications. I first read about this on their website once I found out that I would be taking the drug.  At first I thought that it was only for those that didn’t have insurance but thankfully I was wrong.  I called them up and they paid all but $100.00 of the $2500.00 of my out-of-pocket deductible.  Wonderful news!!  I pay the pharmacy $100.00 at the beginning of the year and Gleevec pays the rest and I don’t pay a dime the rest of the year for this drug. That’s not the only good news that came out of this.  Remember the CPAP?  It seems that my CPAP was covered under the same plan.  Being that my deductible was indeed met I walked out with a new CPAP and a new mask for $00.00.

“Life Goes On!”

365 Day Photo Challenge 168/365 “New Beginnings”

16 Tuesday Jun 2015

Posted by Tim Hughes Living with CML in Photography

≈ 2 Comments

Tags

365 Day Photo Challenge, Alabama, Cancer, CML, Leukemia, Life, Photography

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It’s amazing how one minute life is as usual and then the next life turns upside down and you don’t know which way to turn.  Life should be as a highway with road signs that tells you that there is a turn up ahead or the speed limit changes that way there would be at least a warning that your life is about to be turned upside down.

I’m not one to give advice on such matters because each scenario would be different for each person and each person would handle the situation in different ways.  To have a new beginning would be hard to do no matter what you’re going through.

“Life Goes On!”

365 Day Photo Challenge 150/365 “Day 1”

01 Monday Jun 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Cancer, Cycling, Mileage, Weather

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Day 1 is in the books with 26 miles down. With storm clouds overhead and the sound of thunder off in the distance I was certain I would be soaked before the ride was complete. Fortunately, the ride was completed with the storm going around me.

I got an early start today because my wife had a eye doctor appointment so she wasn’t home to have supper ready when I got home.  She’s a school teacher and she’s out for the summer.

I rode 25 miles yesterday and 26 miles today.  I just hope my legs can keep up.  My plans are to ride the same loop I did today except tomorrow and Friday.  Tomorrow I’m going to a state park and riding a 24 mile loop and Friday I will be traveling to Dothan, Alabama to ride in a 41 mile ride on Saturday.

“Life Goes On!”

365 Day Photo Challenge 149/365 “The Great Cycle Challenge”

31 Sunday May 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, 500 Miles, Alabama, Cancer, Cycling, Rain, The Great Cycle Challenge, Weather

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Tomorrow, June 1st, will be the start of my 500 mile challenge.  With an average of a little less than 17 miles a day, it will indeed be a challenge.  I do average more than 16 miles every time I go riding but I don’t go riding every day.  I also would like to make my goal of $1000 but I think I would make the 500 miles before I make the $1000.

Today was a good day.  I was able to get a 25 mile ride in.  It started out sunshine, then rain then sunshine again.  Typical Alabama weather. With tomorrow being 60% chance of rain I think we will get a decent amount.  We shall see.

https://greatcyclechallenge.com/Riders/TimHughes

“Life Goes On!”

365 Day Photo Challenge 139/365 “A Tribute to Ashlyne”

21 Thursday May 2015

Posted by Tim Hughes Living with CML in Photography

≈ 1 Comment

Tags

365 Day Photo Challenge, Alabama, Ashlyne, Cancer, Cycling, Cycling for a Cause, Great Cycle Challenge, Kids Cancer

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I received this in my in box while I was at work.  This tore me up.

It is with great sadness that we are contacting you today…

Ashlyne, our ambassador and superhero, has lost her battle with cancer.

She passed away late on Tuesday evening at home in California. She was surrounded by loving family and close friends.

As you may know, she recently flew back to California to spend her last days at home, after her cancer had progressed so far that it could not be cured.

She made it home safely and she spent her last days catching up with old classmates and was even able to go to a movie with her friends.

One big highlight last week was that she got to pick out an early birthday present, a pet Chameleon named Lemon. Ashlyne’s mom told us she shed ‘happy tears’ on the ride home when Lemon wrapped his whole body around her finger like a huge hug. 🙂

That’s Ashlyne — she always saw the joy in things.

We’ll remember Ashlyne for her love of penguins and the color pink, her sound advice to “not eat the hospital food,” her skill in removing hospital bracelets and her bright pink cape with the letter “A” on it…

Because as Ashlyne said, “my favorite superhero is me.”

Ashlyne was a remarkable young lady and it was a privilege to know her, she will be in our thoughts and hearts as we ride next month to honor her memory and fight this terrible disease.

This is why we ride…to fight for kids like Ashlyne and fight kids’ cancer!

Every hill we climb, every mile we pedal, it’s to give these kids the chance for a better future.

As June draws near, we want to introduce you to some of the children you’ll be riding for next month. THANK YOU for your support to give these kids the brighter futures they deserve.

https://greatcyclechallenge.com/Riders/TimHughes

“Life Goes On!”

365 Day Photo Challenge 138/365 “Ride of Silence”

20 Wednesday May 2015

Posted by Tim Hughes Living with CML in Photography

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Tags

365 Day Photo Challenge, Alabama, Cancer, Cycling, Fundraising, Great Cycle Challenge, Kids Cancer, Photography, Ride of Silence

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I had the opportunity to ride in the Ride of Silence ride tonight.  This was the third year that I’ve ridden in this ride and to me it’s quite an honor.  We ride in silence in remembrance of those that have been seriously injured or have been killed while riding within the past year.  The ride is less than ten miles and is a fairly easy ride.  Tonight was estimated in having over 100 cyclist riding in the ride.

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Don’t for get to donate if you can to help me raise $1000 by the end of June.  Follow the link to donate.  Thank you.

https://greatcyclechallenge.com/Riders/TimHughes

365 Day Photo Challenge 137/365 “Please Help Find a Cure for Kids’ Cancer”

19 Tuesday May 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Cancer, Challenges, CML, Cycling, Fundraising, Great Cycle Challenge, June, Photography

https://greatcyclechallenge.com/Riders/TimHughesOLYMPUS DIGITAL CAMERA

I’ve signed up to ride in the 2015 Great Cycle Challenge this June. My goals are to ride 500 miles in the month of June to help raise money to fight Kids Cancer. I also have a goal to raise $1000.00 between now and the end of June. Both goals will be a challenge but I honestly think that they are achievable. If you would like to donate please follow the link.

I am fortunate to have kids who were born healthy and cancer free. I can’t imagine what a parent goes through hearing the words that their son or daughter has cancer. Great advances have been made in the medical field to help those with cancer, I know, I’m one of those patients. However, there are some types of cancer that they are still still learning about. I’m hoping and praying that with these funds a cure will be found.

365 Day Photo Challenge 116/365 “Test Results”

28 Tuesday Apr 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Bluegrass, Cancer, CML, Dixie Stampede, Guitar, Oncologist, Pigeon Forge, RBC-Abl, Tennessee, Test Results, Travel

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I finally heard back from my oncologist yesterday.  It was such an emotional day yesterday that I forgot to post something about it.  It took them three weeks for them to get around to find the time to read to me my results.  Anyway, I know their busy and no news is good news, right?  Two months ago my RBC-abl test was .135 which is not bad but remember we’re looking for zero.  Yesterday I found out that that the new number is .08 which is better but again, not zero.  The oncologist did say that it was not uncommon for it to take eighteen months for it to get to zero.  It’s been 14 months as of the 14th of this month.

The above picture is of some pre-show entertainment for the Dixie Stampede, a diner show in Pigeon Forge Tennessee.  If you’re ever there it’s a must see.

“Life Goes On!”

365 Day Photo Challenge 49/365 “Running Out of Time”

18 Wednesday Feb 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Cancer, CML, Dana Micael, Leukemia, Sick

http://tchphotography.smugmug.com/Photo-Shoots/Dana-Micael/i-wWCw9tQ/A

I’ve been sick since Sunday and so far I’ve missed two days of work.  I’ll be taking off again tomorrow to go back to the doctor to see if I can get another shot to hopefully finally get rid of this mess.  I’ve been sick more since I’ve been diagnosed with CML than in the past several years combined.  The doctor did say that my immune system will be low but I wasn’t really prepared for all the time off that I’ve had to take so far.

“Life Goes On”

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