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

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Tag Archives: Cancer

Day 23 Roller Coaster Ride For Sure

08 Saturday Mar 2014

Posted by Tim Hughes Living with CML in Uncategorized

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Cancer, Cycling, Dizzy, Gleevec, Leukemia, Pharmacy

Last week was one wild emotional roller coaster ride.  The week started out trying to find out why I haven’t received my Gleevec.  To make a very long story short the nurse at the doctors office sent the script to the wrong place.  I had been told earlier that my co pay was going to be $75 for the prescription.  Well, they were wrong.  It wasn’t $75 but 75% and with my deductible being $1000 that meant that my script was going to be $1000.  One of the things that people are not aware of is that many drug manufacturers offer financial assistance. I called Gleevec and got approved for a drug card.  My script went from $1000 to $100 for the year.  Happy Dance.  I called the pharmacy and got everything ordered yesterday and the Gleevec arrived this morning.  

I got up real late this morning.  I’m on call this month and I don’t usually sleep well while on call.  When I got up my daughter told me that my meds came in and I started reading all the side effects that this med has.  It’s got a long list but hopefully I won’t have any of them.  I ate two pieces of toast with peanut butter with a glass of milk and afterwards took all my meds.  Thirty minutes later I got real dizzy so I went to the kitchen and had an early lunch.  The dizziness went away.

Later this afternoon I got the urge to get outside and enjoy the sunshine.  I hopped on my bicycle and got twenty miles in.  It really felt good to be outside after having to deal with all this weird winter weather we’ve been having.  Spring time is coming to the deep south, it’s just taking it’s sweet time.

Day 14

26 Wednesday Feb 2014

Posted by Tim Hughes Living with CML in Uncategorized

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Cancer, Leukemia

On February 13th, I was diagnosed with CML, Chronic Myeloid Leukemia. Yesterday, after the bone marrow test last Monday, my doctor confirmed his diagnosis. Fortunately, this type of Leukemia is less aggressive than most that you hear about today and can be controlled by oral medications.

I don’t want to make light of this situation. It is still Leukemia and my family and I have a long road ahead of us. At least I hope so. There are still a lot of “IF’s” but I am confidant in my doctor with his decisions and most importantly I have faith that the good Lord will take good care me and my family.

Twenty years ago when someone who was diagnosed with CML, the life expectancy was only 3 to 5 years. Today, thanks to the advancement of medical technology, the survival rate went from 5 percent before the year 2000 to 95 percent today according the Leukemia Societies website.

Thanks to all who have said a prayer for me and my family and I would appreciate your continued thoughts and prayers at least until we get through the treatment phase. I feel that if it were not for your prayers this could have been a whole lot worse. Again, thanks for all your prayers.

So, How do you feel?

21 Friday Feb 2014

Posted by Tim Hughes Living with CML in Uncategorized

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Cancer, CML, Leukemia

I get this question all the time.  Before now I would always answer, “I’m fine”, or “I’m wonderful, how are you?” expecting the same type answer. I never expect to hear all their ailments when I ask someone in passing how they’re doing so I guess it’s appropriate for me to answer in the way I have in the past.  With that said, am I telling them a lie if I tell them I’m feeling fine when in fact I’m worried sick that the doctor’s are going to tell me that I have Leukemia and in doing so will these people get mad at me because I didn’t tell them when they do find out?

If someone asked me right now how I’m doing or how I felt, if I told them that I felt fine I wouldn’t be lying to them.  I don’t have any ailments to speak of.  So right now I wouldn’t be lying to them.  I have told a few people that I may have CML but it’s not confirmed.  It won’t be confirmed until one day next week.  By now I”m sure the word has gotten out that I’ve got Leukemia so I’m sure that when some people ask me how I’m doing it’s because they know and when I tell them that I feel fine I get some of the strangest looks. I guess they’re expecting me to tell them that I don’t feel fine and that I have Leukemia.

I don’t want to bore people with my ailments nor do I look for sympathy.  I do not want to be treated any differently than I have been treated at any other time in my life.  Yes, I have CML.  Yes, I could get worse but don’t treat me like I’m on my death bed right now because right now I’m fine.

 

Down Right Scary Part 2

11 Tuesday Feb 2014

Posted by Tim Hughes Living with CML in Uncategorized

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Cancer, health, Oncologist, worried

Finally got a call from a Dr. Barton, an Oncologist at one of our local hospitals.  I’ve got an appointment at 9:30 am on Thursday of this week.  Now I am a very impatient man and the thought of having to wait until Thursday is about to drive me nuts.

We’ve been having some crazy weather.  We were supposed to get some ice and snow today but it was a no show but now they are predicting more ice and snow for tomorrow night and I’m willing to bet that my appointment will be cancelled due to the weather.

I’m trying not to worry about what could be wrong with me and the thoughts of me having some sort of cancer is scaring me to death.  I’ve got two beautiful teenage daughters and a 20 year old son that I’d like to see grow up.  I’m beginning to doubt that now. Don’t know why because all I’m going on is speculation.  I’ve got a lot of people praying for me so I hope nothing is seriously wrong.

More to come when I know something.

Down Right Scary!!

09 Sunday Feb 2014

Posted by Tim Hughes Living with CML in Uncategorized

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Cancer, Diabetes, Doctor, Feelingfine, Oncologist, Scare

Every six months I go to the doctor and let them check me over as I’m a diabetic.  Two weeks prior to my doctor visit I go to the lab and let them draw blood so that when I go to the doctor he has everything in front of him.  I went to the lab last Tuesday, 2/4/14 and on Wednesday the next afternoon the nurse called and said that my CBC’s were highly elevated.  She wanted to know if I was sick, running a fever or otherwise in any discomfort.  I told her I felt fine.  The nurse then said that it was probably a lab error but wanted me to do another lab session.  I went Friday morning and did another lab session and by Saturday night I got another call.  Lab work showed high elevated levels of CBC’s again.  Now I’m expecting a call on Monday from an Oncologist.  Hell, I didn’t know what a Oncologist was until my wife looked it up for me.  It’s a cancer specialist.  Now I’ve got something else to worry about.  

I’ll post more when I find out more.

 

 

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