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

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Tag Archives: CML

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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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 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”

365 Day Photo Challenge 44/365 “Night Out on the Town”

14 Saturday Feb 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Aniversery, Cancer, CML, Gymnastic, Leukemia, Pep Band, Photo, Photography

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Went to Tuscaloosa tonight to the Gymnastics meet and also spent a few minutes with my son who played in the pep band.  Please forgive the picture as I was way up in the stands with my 70-300mm zoom lense.  Our team one which is always a good thing.

Today marks the one year anniversary since my diagnosis of CML.  I’ve got an appointment to see my oncologist in just a little over a month.  I’m still waiting on the test results that state there are no traces of the cancer in my blood.  That day will come soon enough I hope.

365 Day Photo Challenge 34/365 “Good News”

03 Tuesday Feb 2015

Posted by Tim Hughes Living with CML in Photography

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

http://tchphotography.smugmug.com/Birmingham/i-JfvvrW4/A

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.

I Lost it Today :(

17 Wednesday Dec 2014

Posted by Tim Hughes Living with CML in Cancer, Depression, Leukemia

≈ 2 Comments

Tags

Bad Mood, Bloodwork, Blurred Vision, Cancer, Challenges, Christmas, CML, Depression, Leukemia

Today was not a good day for me.  I guess all the troubles in my life finally caught up with me.

For those just finding out about this blog, I have CML, a form of Leukemia.  I was diagnosed with it this past February.  I’ve been taking Gleevec and until last week I thought I was doing pretty good.  My BCR AbL started off at 138 and had gotten down to .134 three months ago.  My last report last week the test showed that it went up to over 2. It was a big disappointment.  I go back in six weeks.

Last week was the beginning of my trouble when my 17 yr old daughter was involved in an accident.  It seems that an 88 yr old man pulled out in front of her.  My daughter is fine with the exception of some back pain in which she is seeing a doctor about.  This was my wife’s 14 yr old van that was totaled by the insurance company.  We do not really have the funds to get another vehicle at this time especially since Christmas is just around the corner.  Just don’t know what to do at this point.

And to add to already what’s going on I’m having eye issues and I’m going to have eye surgery the first part of January.

This is the Christmas season and it’s supposed to be a happy time.  It usually is but the last few years it get’s harder and harder to get into the Christmas spirit.  With my health the way it is and not knowing what the future holds it’s easy for me to get depressed.  I’m the father of three and I’m supposed to be strong and not show emotions but I’m here to tell you that it’s difficult for me to hold it in.  Especially today.

It was while at lunch today.  We were listening to the company choir sing some Christmas songs when it hit me.  I was remembering the times when my kids were younger and times were much different.  I got to thinking just how much longer do I have?  I was doing ok until the choir started singing a song that I haven’t heard since my childhood and that’s when I started to loose it.  Not wanting to show my emotions in public I had to get up and leave the table.  It took be several hours to get my act together.

Maybe tomorrow will be a better day.

Good News for Now!

24 Wednesday Sep 2014

Posted by Tim Hughes Living with CML in Uncategorized

≈ 3 Comments

Tags

Bloodwork, Cancer, CML, Dr Appt, Leukemia, Medications, Oncologist, Test

Heard from my oncologist this afternoon. My levels has dropped down to .134%.from .734% two months ago. It’s still not zero but it’s slowly getting there. The doctor feels confidant enough to leave me on my current medication. The only thing that was discussed that I’m not to pleased with was the topic of another bone marrow biopsy. We will discuss this more in depth at my next doctor appointment in three months

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