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~ Diabetes, Cancer Survivor, Cycling, Photographer, Exercise, College Parent, Twins, Boy Scout Leader, Life

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Tag Archives: Leukemia

Life Goes On!

17 Friday Jan 2020

Posted by Tim Hughes Living with CML in Cancer, Diabetic, diet, Leukemia, Weight Loss

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Cancer, Leukemia, Oncologist, Ulcers, Weightloss, Zantac

_1TH9138Happy belated holidays! Wow!  It’s been a rollercoaster ride for me and my family.  There is no way I can put all that’s been going on in one post.  If I did, it would be a very long post and most would not read to the end.  So, that being said I’ll probably post several topics in the next few days.  I’ll go ahead and briefly tell you what’s been going on though.

Diet  Nonexistent.  I really tired but these holidays were just too much for my weak will power.  I am back on it but and I have lost a few pounds.  I got on my treadmill the other day and I think the thing has a weak motor.  I know I weigh quite a bit but I don’t think the thing should stop suddenly like that. Maybe I’ll rejoin the gym at the local Baptist church up the street.

Dad’s Kidney Stones Dad called me up before Christmas wanting to know if I could take him to the hospital to have a kidney stone removed.  It seems that my mom, which is in her 80’s, had to take her to a clinic in the early morning hours that morning.  The doctor there said that he had a stone which was too big to pass on his own.  1.2mm x .08mm.  The clinic did not have the resources there to break up the stone.  I took him to the hospital and the doctor there said that they normally do not call in the urologist for anything that small.  My dad and I looked at each other. I looked it up and 1.2mm is nearly half an inch.  I called the doctor out on it and he reassured me that my dad could pass the stone.   The day after Christmas, which was about a week later, my sister made an appointment with a urologist and had the stone removed.  I won’t go into how they did it but from the sound of it, I wouldn’t want to have it done.  I spoke to him yesterday and all is well.

Oncologist Report  I haven’t been or heard from my oncologist since last August.  A lot of things have been going on with different meds that had me concerned about my numbers.  You see, I’m on drugs for some ulcers in my lower stomach.  One of the drugs that I’ve been on is Zantac.  This drug has been known to lower the effectiveness of my cancer drug as well as cause cancer too.  In order for the ulcer med to have minimal effect on my cancer drug, there had to be a six-hour delay before I could take my cancer drug after taking the ulcer drug.  Now, the new drug they have me on after taking me off the Zantac, they want me to take it four times a day but still keep the six-hour delay.  Can’t be done.  So far I have only figured out that I can take it in the morning and once at night before going to bed.  This is crazy. Oh, by the way, all my numbers are good.  

Ok, that’s it for tonight.  There are several more interesting items that I want to talk about so stay tuned.

 

 

Feeling Good. New Goals in Life

11 Friday Oct 2019

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

≈ 6 Comments

Tags

Cancer, Chronic Myeloid Leukemia, Exercise, Fitbit, Leukemia, Low Carb, Weightloss

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As the title says I’m feeling pretty good right now.  My breathing is better, I’m taking iron infusions so my energy is better as well.  So, with that being said, I will be starting on a three month diet beginning on Monday of next week.  I have a plan, one that includes low carb, regular exercise; mental as well as physical.  I’ve joined a neighborhood gym that will help me during the cold and rainy days that are sure to be coming.  I will post regular updates here so I can keep up with my progress.  Also, I’m on Fitbit so if you would like to send me a request, you can see live results.  My email address in timhughes1963@gmail.com

See you on Monday!!!

 

Life is an Adventure Part 2

19 Friday Jul 2019

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

≈ 2 Comments

Tags

BMT, Bone Marrow Transplant, Cancer, Leukemia, Medical, Stem Cell Replacement

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Today was my appointment with my new oncologist.  The doctor looked like he was fresh out of med school.  He looked like he was about my son’s age, about 26 or so.  He is from Saudi Arabia or somewhere close by with a heavy accent. I had no trouble understanding him so he must have learned English at a young age.

He arrived to my appointment about an hour and a half late.  I was not impressed by this.  However, he did have a good excuse.  He said that his excuse was in two parts.  One, he had to do rounds for his partner who was on vacation this week and he had to receive a teleconference with a group in Korea that involved a case study he was involved with.

I went in this appointment thinking I was to have a bone marrow transplant aka stem cell replacement. So I was a bit surprised when he said that I would stay in my current med for a while.  He also stated that because of my current health condition, with my diabetes and cardiac issues,  I was not a good candidate for stem cell replacement. The option would still be there but not right now.  We will continue to “work” with the current meds and see if we can get them to work again.

The numbers, although higher than normal. were not really that high, according to my new oncologist.  He has seen higher and with that said, has gotten the numbers back down to a manageable rate with little to no problem.

I have little choice but to trust him.  We will see what he has to say and we’ll do what he asks. I go back in one month for more lab work and for another visit.

Living with CML

17 Wednesday Jul 2019

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

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BMT, Cancer, CML, Hospital, Leukemia, Worry

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Let me introduce you to a friend of mine.  Her name is Tiffany.  She is currently in her third year of remission.  The above picture is the day she was admitted into the hospital for a month long round of treatment for CML.

Her story is a little different than mine.  She claimed that she had trouble taking her meds. She had terrible reactions when she took her meds and therefore quit taking them. Her CML advanced into something else and her doctors had to take more radical steps in treating her.  She was only treated for about a year with oral meds before she had her bmt.  Her Instagram account is full of pictures where she shows tubes running out of her nose and later being put in her chest.  These are pictures that I look at and put concern in my heart.

I’ve been put in the hospital before for different reasons but only for a short time.  I think the most I’ve ever stayed in a hospital is five days.  I can tell you that I like to have went out of my mind after staying in the hospital that long.  One thing that I know will be different, after about the third day, I felt pretty good.  Good enough to go home.  I doubt very seriously that after three or four days I’ll feel like going home.

There is still a lot that I don’t know about having a bmt.  I do know that before anything happens a donor will have to be found.  That could take a while even though I do have three siblings that could be a match.  I also found out that I could be having some kidney trouble.  This too could also slow things down I suppose.  I have an appointment with the kidney doctor next week.

I’m a person of worry.  I worry about everything.  The main worry I have right now is that once treatment starts I won’t be able to leave the hospital.  That means that all my family better stay safe.  I can’t be leaving the hospital to go to no funerals.  Things that get broken will have to stay broken until such time as I feel like repairing them or I can get someone there to repair it.  I may get someone that I used to work with to check on my wife from time to time to make sure nothing needs repaired.

Life is an Adventure Part 1

17 Wednesday Jul 2019

Posted by Tim Hughes Living with CML in Cancer, Leukemia

≈ 1 Comment

Tags

Blogging, Cancer, CML, Hairloss, Hospital, Leukemia, Tests

Life is certainty an adventure.  One that rarely disappoints.  That is, if you life long enough to live through it.  If you’ve been following my blog for any length of time, you should know by now that I am cursed with the dreaded “C” word, Cancer.  I have what is known as CML.  Chronic Myeloid Leukemia.  I was diagnosed with CML back in February, 2014, Valentines day to be exact.  Since my diagnosis, I have been on three different types of oral medications, the preferred form of chemotherapy for this type of Leukemia.  Each one with it’s own faults.  With each medication, it would start off working but for some reason the med would stop working and I’d be left with months of trying different dosages trying to find a happy medium.  When this last drug bit the dust, my oncologist gave me the dreaded news that he would be deferring me to another oncologist, one who specializing in bone marrow transplants.  At this writing, I have an appointment this Friday with an oncologist at another hospital.  However, this doctor is not part of the transplant team.  So, I’m somewhat concerned as to why I’m seeing him.

This is the end of Part 1.  Part 2 will come after the meeting with this new oncologist.  If things go according to the way I think, I will be going through the transplant soon.  I’m not sure when but I know it will be soon.  Donors will have to be found,  tests will have to be run and so forth.  I will keep this blog going as long as I feel like blogging.  Pray for me during this time._2TH1271_tonemapped

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

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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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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.

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