Posted by Tim Hughes Living with CML | Filed under Uncategorized
17 Monday Mar 2014
Category Archives: Uncategorized
Day 30 All is Well
15 Saturday Mar 2014
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So far only minimal side effects with my Gleevec. I feel a little fatigued but that can be related to a lot of other things such as staying up too late and the time change. i am also experiencing some bone pain in my right hip. Again, this could be related to a number of other circumstances. It’s not as bad today as I got a chance to ride another 20 miles this afternoon.
I’ve got to get a hold on my dieting. I got on my scales this morning and I’ve gained nearly all my weight back. This is not good. I am determined to do better. I’ve got a meeting tomorrow at 1:30 pm so I’m planning on getting up early and doing a 20 mile loop. That is if ‘it’s not raining.
Day 23 Roller Coaster Ride For Sure
08 Saturday Mar 2014
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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
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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.
Got Twenty Miles In
23 Sunday Feb 2014
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I had an enjoyable afternoon ride, just me and God. It’s been nearly four weeks since I’ve been on my bike. The weather here has been too cold for me to ride. I think now I’ll sit here and pass out.
So, How do you feel?
21 Friday Feb 2014
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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.
Day 5
17 Monday Feb 2014
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I had my bone marrow biopsy today. It was one of the most painful experiences I’ve had and not be doing something I enjoyed. If you’ve never had one let me tell you what they did. First they made me undress and put on a backless hospital gown. The did give me a pair of disposable terrycloth shorts to put on underneath. I lay there for a while until the doctors come in and he tells me to lay on my left side in a fetal position. The doctor then injects the area on my hip with a local antithetic which hurt like hell. Then the real pain begins when he begins to drill into my hip with some sort of needle. That hurt worse than hell. The whole procedure didn’t last thirty minutes but it felt like an eternity while he was doing it. I call the doctor next Monday to make yet another Dr. appointment to find out the results.
Trying to keep my spirits up.
Day 1
13 Thursday Feb 2014
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I titled this as “Day 1” because this is the first day as being diagnosed as having CML, Chronic Myelogenous Leukemia.
This day started off crazy. Last night and into early this morning we got over 4 inches of snow. Roads were closed and almost all business were closed, including my Oncologist. My appointment was at 9:30 am and I started calling around 8 am to see if they were going to be seeing any patients today. To make a long story short, I was finally able to make an appointment for 2 pm today.
Due to the snow all the schools were closed and my wife was able to go to the appointment with me. The doctor sat us down and was very through. He went line by line and explained everything to us. He answered all our questions and made sure we understood. He had a since of urgency when he spoke and he knew without asking that I was deeply concerned with my health.
Several years ago this type of Leukemia was quite fatal. The survival rate was only three to five years. Now the survival rate is much higher with a 95 percent rate. I’m not liking the “L” word but if I had to choose which one I wanted I think this one would be it. A pill taken twice a day is not a cure but it will control the spread if they have caught it in time. We shall know this answer come Monday. I have a bone marrow biopsy Monday morning and this should tell me which stage I’m in.
If you are a praying person, I’d like for you to spend a moment or two saying a prayer not for me but for my wife and kids. I have a set of twin daughters, 16 yrs old and a 20 year old son who are taking this pretty hard.
TH
Why Older People Shouldn’t Bungee Jump
13 Thursday Feb 2014
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This is worth watching
Complete Shut Down
13 Thursday Feb 2014
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Once again snow has completely shut down one of the largest cities in Alabama, I got just over four inches of snow here while others north and east of us got upwards around seven plus inches. Cities south of me only got anywhere from a dusting to one inch.
It’s funny though that one inch of snow can shut this place down. As I’ve stated in an earlier post, we are just now equipped to handle it. Other cities north of us has salt trucks that go out and prep the roads before the snow starts falling. We have sand trucks. Two different things. Salt helps to melt the snow and sand only helps get traction and usually makes for a messy vehicle after the snow is gone.
Birmingham doesn’t see much snow. I’m 50 years old and the most I’ve ever seen is 18 inches in March of 1993 and the city was shut down for over a week. Temps stayed below freezing for most of the week and the snow never melted. We lost power for the week and had no emergency power. We do now. We had to heat and cook our food out of our fireplace. We took all of our perishables and put them on the deck and covered it up with snow so that we wouldn’t loose most of our food. All of our meet and such we put in the bath tub and covered everything with snow. That worked pretty well. We even had a water bed at the time. Do you know what happens when you have no power on a water bed? It get’s so cold you can’t sleep on it. Luckily, we had a fold out couch that my wife and I slept on. Did I mention she was GREAT with child? I was worried the whole time we were stuck in our house thinking that she was going to go into labor. Thank the good Lord above she didn’t.
Temps should warm up quickly tomorrow morning and the snow should start to melt early on. Either I go to my doctor appointment or I end up going to work tomorrow. My guess is my appointment will be postponed and work will open around 10 am in the morning. Either way I won’t be able to stay home and enjoy the snow with my girls. I can’t really afford to take more time until I find out what is going on with my blood work.
Take care everyone and have a blessed day.
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