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

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Tag Archives: Leukemia

Everyday is a Blessed Day!

11 Friday Jan 2019

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

≈ 2 Comments

Tags

Cancer, Drugs, Leukemia, Medication, Medicine

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It’s been nearly five years since my diagnoses of CML, a form of Leukemia.  If I had received the diagnosis back in the 1990’s I would have been told to go home and make my funeral arrangements.  With today’s modern medical advancements, which I’m highly thankful for, those of us with this diagnosis are able to live a somewhat normal life for many years.

There is a “go-to drug” called Glevic that is prescribed to most all new patients.  This drug worked for me for a while but stopped and I had to find something else.  The next drug caused more problems than the actual cancer did.  This new drug I’m on is working for now but is causing fluid around my heart and lungs but not as bad as the previous drug.

Is my life back to normal, no.  There have been many changes that had to be made to make my life a little better.  Because of the fluid around my heart and lungs, I’m no longer able to do a lot of the things I used to do.  Basically, I had to stop anything that would cause me to get out of breath with exertion.  That doesn’t mean I’ve given up.  I still try to walk and stay active. Every morning that I wake up I feel blessed to still be here. I’ve got a lot to live for and I hope I’m here for a while to come.

Today’s Thoughts 4/14/2018

14 Saturday Apr 2018

Posted by Tim Hughes Living with CML in Cancer, Leukemia

≈ 2 Comments

Tags

Cancer, Cats, CML, GrayfeathersBlog, Leukemia, Pets, Storms, VLog, Weather

Good afternoon everyone.

As I write this, we are experiencing a severe thunderstorm. This system has caused several tornado’s in the state of Mississippi but has weakened during its path over to our neck of the woods, in which I’m very thankful for. Looks like it may be a wet Saturday for us.

My cat, Clyde, hates thunderstorms and is sitting next to me on the floor looking for protection.  He’s not a lap cat and hates to be picked up and will not sit with you or me or anyone else as far as that goes.  But during storms, he seeks my protection and my protection only.  He just heard a loud clap of thunder and off he goes behind my bed.  He will not return until all is quiet again.  Funny,  cowardly cat.

Not much reaction to my video that I posted the other day.  I guess that might my last one. I don’t know, I may try one more to see how it goes.  I’ll give it some time though.

After I made the video, I went back to youtube and watched some video’s from the Leukemia Society.  They had posted several videos of patients with CML as they described their weeks up to being diagnosed.  They included bruising,  Feeling tired all the time, headaches and wanting to sleep all the time.  I never experienced any of that.  On one video, the guy was saying that when he was diagnosed back in 2014, his white blood count was over 260.  Mine was caught before it got that high.  At the time of diagnoses, mine had gotten as high as 138.  Maybe that’s the reason I didn’t experience any of the side effects; my numbers just wasn’t as high as his.  I also read that one lady, who also was diagnosed in 2014, got her numbers down and was taken off all of her meds.  She still get’s tested every six months but she no longer takes meds for her CML.  That’s encouraging.

I hope everyone has a chance to get out and enjoys the weekend.

Tim

 

 

Good News/Bad News

04 Sunday Jun 2017

Posted by Tim Hughes Living with CML in Cancer

≈ 2 Comments

Tags

Cancer, diet, goals, Leukemia, Weightloss

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Bad news first.  My Leukemia is back.  Got a call from my oncologist on Friday and he told me that my numbers were back up.  I’m to increase my dosage and go see him in six weeks for more blood work.  Nothing else to do until then so there’s no since in crying over spilt milk.

Now for the good news.  I’ve started doing the low carb diet.  I’m limiting my carbs to 35 to 40 per day.  I started last Saturday and I’ve lost close to ten pounds this week.  I know most of it is water weight but hell, then pounds is ten pounds.  Another plus is that my sugar has been a lot better as well.  It dropped about 30 points this week.

I went hiking yesterday with the wife.  I won’t go into too much detail here because I want to do a review of this waterfall on another post.  It wasn’t but a two mile hike but the steep hill made it much more of an exercise event for me.  We had to stop several times comeing back for me to catch my breath.  I can’t wait until I get back in shape again.

On another note; my weight loss journey started when my weight got to 345lbs.  My ultimate goal is around 225lbs.  Until recently I thought I’d never reach that goal.  I can now see a light at the end of the tunnel.  It’s very dim mind you but it’s there. Today’s weighin was 268lbs. It won’t be long until I reach my mini goal of 265lbs.  It’s taken me five years to get down to where I’m at.  Will it take me another five years to reach my ultimate goal? I hope not.

Update 12/17/2016

17 Saturday Dec 2016

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

≈ Leave a comment

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.

Improving? Not so Much.

28 Sunday Aug 2016

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

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Tags

Alabama, CML, Doctor, health, Kids, Leukemia, Million Dollar Band, Oncologist, Parents, Sick, University of Alabama

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I started back on my CML meds last Monday and to be honest I think my breathing has gotten a little worse. I’ve started climbing the steps at work a little more and trying to maintain at least 10,000 steps in a day. I spoke at length to my oncologist last Monday the day I started back on my Sprycell and he told me that the majority of the people who end up with water retention will do better at a lower dosage.  I’m now at 80 mg instead of the 100mg that I was once on.

I’ve decided not to just sit at home waiting to see if my lungs will fill back up with fluid.  I don’t really feel like getting out and doing anything but I feel that I’ve at least got to try  and get what little exercise that I can get.  I think it could only help matters if I get off the couch and do something.

Yesterday, my wife and I met our son at the university where my daughters are attending.  They’re both in the band, one plays the sax and the other is a band manager.  Yesterday was their parent preview show.  It was awesome seeing my daughter’s perform. I got to meet one of their roommates and enjoyed going out to dinner afterwards.  As usual it was hard for us to leave after visiting with them.

Today I went to my parents house to check on them as well as my bees.  It’s been at least two months since I’ve done either one.  The bee yard was grown up with weeds and it took everything I had to use my weedeater to chop down the weeds just so I could get to the beehive.  After about an hour of cleaning up I went and sat with my parents for a couple of hours.

It was hard to leave my parents. They are both getting up in age and their health is not as good as it used to be.  My mom had to have more surgery a couple of weeks ago on her diaphragm due to finding a hole where her colon and her intestine were coming through.  The doctors seem to think that this was caused by the accident they had back in February.

The above picture is of the band managers.  The young lady is my daughter.  What a  trooper.

It Sucks Getting Old :(

08 Friday Jul 2016

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

≈ 1 Comment

Tags

Cancer, CML, Doctor, Leukemia, Oncologist

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For several months now I have been undergoing a barrage of test by one doctor or another. If you’ve ever seen the movie National Treasure, it’s like one clue leads to another clue.  It all started with a personal evaluation that was performed on me back in March from my boss.  In the months prior to my evaluation I had made several costly mistakes.  Luckily they were all monetary and not personal injury.  During my evaluation my boss discussed with me that he was worried that either I would be harmed by my actions or the person I was working with would be harmed.  He also stated that until I was checked out by my physician I would be temporarily placed on light duty with any safety related responsibilities.   At first I was furious as you can imagine but the more I thought about it the more I realized he may be right.  Although I didn’t want to admit it I had been experiencing some forgetfulness but I had chalked it up to getting old.

The first test was with a neuropsychologist.  I failed miserably.  One test consisted of the nurse reciting a list of paired words, about 50 I think, that after she recited the list I was supposed to repeat to her one of the words that was paired too.  Example; Truck-Bread, Dog-Umbrella.  She would read Truck and I was supposed to tell her Bread.  I failed at this test.  There were several other tests that I failed at.  The results that were given to my primary care doctor was that I had three areas of disabilities, motor control, memory loss and multitasking.

Another test that was performed was on my feet.  I had been put in the hospital with influenza A and pneumonia.  After spending a week there I was released to spend another week at home.  While I was off I had an appointment with a neurologist in which I spent over an hour being hooked to electrodes that shocked my feet to find out just how numb they really were.  After the tests were performed I was given the diagnoses of diabetic neuropathy.  Hell, I already knew that.

During one of my visits with my oncologist I was given a test to check out my immunity because being admitted twice to the hospital in less than six months set off a couple of alarms.  He did a preliminary test and it came back showing signs of IgG deficiency (immunoglobulin G). I went back on Wednesday of this week to let them do a more thorough test.  I’ll find out the results of those test sometime next week.

Today I went to another neurologist that all i did was talk and answer a few questions.  A small word association test was performed and again I failed.  He asked me to remember three words and he would ask me later on to recite these words back to him. When asked a few minutes later I couldn’t remember the three words.  I saw the doctor for only a few minutes after which he wanted to do a blood test and an MRI.  The blood test was done downstairs but the MRI will have to be scheduled once the insurance company approves the test.

So, as you see I’m falling apart.  I’m not letting it get me down.  Just living day to day right now.

365 Day Photo Challenge 349/365 “‘Tis the Season but I’m Not Feeling it”

14 Monday Dec 2015

Posted by Tim Hughes Living with CML in Photography

≈ 2 Comments

Tags

365 Day Photo Challenge, Christmas, CML, College, Kids, Leukemia, Medications, Twins

https://tchphotography.smugmug.com/Botanical-Gardens/i-ZK8ZW7w/A

I go through this every year.  It’s nearly Christmas and I’m just not in the mood for it.  It’s not that I’m depressed; it’s more of disappointment that I can’t afford to more for my kids.  The older they get the more expensive their needs or wants get and we can’t afford to get everything they ask for.

This year my wife and I discussed the fact that the girls will be going off to college next year so we’re going to make sure that we help them with things like laptops and other necessities for college.  With that said, that will be two of everything.  One of the things that we will be trying to get them within the next few months is a car.  This brings up another problem.  The girls haven’t decided on where they want to go to school.  Each one has stated that they want to go to separate schools and if they do go to different schools then we’re going to have a huge problem.  We can only afford one car.  I want the girls to make their own decision on where they want to go to school but in reality they will have to go to the same school or else one will be walking.

And of course I’m somewhat concerned about my CML levels going up the way they have.  I’ve been back to the oncologist and they’ve done more blood work to determine what the next step will be as far as the medications that I will be on, being that the ones that I’m on isn’t working anymore.  I’m hoping to hear back from him this week.

“Life Goes On!”

365 Day Photo Challenge 337/365 “Renewed Friendships”

02 Wednesday Dec 2015

Posted by Tim Hughes Living with CML in Photography

≈ 2 Comments

Tags

365 Day Photo Challenge, Alabama, Cancer, Friendship, Leukemia, Oncologist, Travel

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After my appointment with my oncologist I spent some time renewing an old friendship with a young lady from my past.  I had seen that she was in town for a few days and I called her up to see if she wanted to meet for some coffee.  She was elated to hear from me.  We met at a local coffee shop where we talked for over two hours.  I drank so much coffee I think it will be sometime next week before I get any sleep.

It’s amazing how time gets away from you.  I had no idea that it had been ten years since I’d seen her.  We had so much to talk about but so little time to catch up.  She had to hurry on to catch a flight back to where she’s now living.  It was really good to be able to spend what little time I had with her today.  I’m hoping that it won’t be another ten years before I get a chance to see her again.

“Life Goes On!”

365 Day Photo Challenge 331/365 “Happy Thanksgiving”

26 Thursday Nov 2015

Posted by Tim Hughes Living with CML in Photography

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Tags

365 Day Photo Challenge, Cancer, Cast Iron, CML, Cooking, Dutch Ovens, Family, Leukemia, Recipes, Thankfull

Thanksgiving

I’m stuffed to say the least.  I’m thankful that my family is here with me today.  With the kids getting older I’m not sure how much time we have with them.  I know that they will always try to come home for the holidays.

I’m also thankful that I’m still here to be able to spend time with my family.  With the diagnosis of CML my life was changed forever.  I’m thankful for the men and women who discovered the drug and for all those patients who did the case study that allowed the passage of this drug to take place.

We spent time with my wife’s family today.  Tomorrow I’ll be able to spend time with my mom and dad.  I’ll get up early tomorrow and cook breakfast for my family then I’ll start working on a Dutch Oven dish to take to my parents.  This will be the first time that I’ve cooked for the parents in my Dutch Ovens so I’m excited about this.

Speaking of Dutch Ovens, I have a new blog that I would like for you to check out.  It’s going to be full of different recipes that I have gathered over the past several years.  If you like cast iron cooking this will be for you.  If not, then don’t feel obligated to follow.  I posted my first post just moments ago.  https://thecastironblackpot.wordpress.com/

Again, Happy Thanksgiving everyone!

“Life Goes On!”

 

365 Day Photo Challenge 322/365 “Day 17”

17 Tuesday Nov 2015

Posted by Tim Hughes Living with CML in Photography

≈ 5 Comments

Tags

365 Day Photo Challenge, Cancer, CML, Exercise, Leukemia, treadmill, weight gain, Weightloss

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

Have you ever have one of those days where you just wanted to go back to bed and crawl under the covers and hide from the world hoping that no one would find you?  Today was one of those days for me.

It started when I got on the scales this morning.  Another 2 pounds gained.  It’s tough seeing weight that you’ve already lost appear back on the scale.  Where’s the encouragement to keep going if all you do is see is weight added back to the scale even making sure that you’ve stuck to your exercise program and your diet.  Oh well, I’m going to keep going.  Don’t really have a choice but to keep going.

What really made me want to hide from the world was the phone call I got from my oncologist this morning.  If you’ve been following this blog long you will remember that I’ve got CML, a form of Leukemia.  When I was first diagnosed my blood levels were at 133%.  Six months ago at my last appointment my blood levels were down to .05%.  A very good report indeed.  Not today however, my levels went up to .65%.  I go back to my oncologist in two weeks for more blood work then after that blood work comes back the doctor will make his decision as to what my next step will be.

“Life Goes On!”

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