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Tag Archives: CML

Time for a Poll

01 Thursday Sep 2022

Posted by Tim Hughes Living with CML in Photography

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Tags

Cancer, CML, poll, Weight, Weightloss

Tomorrow is weigh-in. I’d like to see if anyone out there is willing to voice their opinion as to how much I’ve gained or lost.

Come on guys let’s play along. Did I gain weight? If so, how much? Did I lose weight? If so, how much did I lose?

I’m looking forward to seeing what you guys have to say. Remember, I lost over fifteen pounds last week. Did I lose that much again? What do you think??

Alice Fitts. One of the girls that I photographed earlier this week.

Welcome!!

04 Saturday Jun 2022

Posted by Tim Hughes Living with CML in Cancer

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Boring, CML, flooring, followers., health

It’s been a while since I’ve posted anything and I have probably lost several followers because of it. As I’ve stated several times throughout my time here, I really don’t post to gain followers. I post because this is a way that I can keep myself honest.

If you want to know about me just ask. I’ve posted enough about my health that I think most people turn me off the minute they see that I’ve posted something. I do feel encouraged that people do like a post though. Although they are few, I do like the comments that get posted on here. So far none have been out of line and I appreciate it.

I lead a pretty boring life so there’s nothing much to post about unless it’s my health. Having CML does make it a little challenging. Something is causing my breathing issues but we are not sure yet.

Stat tuned, I’ll have a story to tell about our flooring project that’s going on now.

Hello!

02 Thursday Jun 2022

Posted by Tim Hughes Living with CML in Cancer

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Blood Cancer, CML, Retirement

It’s been too long. I had no idea just how long it’s been. I’m still alive, obviously. I’ve got a lot going on so I’ll post more about some of the things later this evening.

Ta ta for now

Living With CML To Be Or Not To Be

03 Thursday Oct 2019

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

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Tags

Bone Marrow Transplant, Cancer, Chronic Myeloid Leukemia, CML, Disability, Oncologist, Tests

_3TH9526

As a child I used to love to ride roller-coasters.  I would ride for hours just to ride different coasters.  As I got older I out grew my fascination with coasters because my stomach couldn’t handle going upside down and being bounced around as much.  I guess riding a coaster is the best way to describe living with CML. It is for me at least.

The last few months have been just that, a roller coaster.  Since I was diagnosed in February of 2014, I’ve been on three different medications.  I had to change  because either the medicine quit working or it caused fluid around my heart and lungs.  In January of 2016 I had both type A and type B flu as well as pneumonia along with fluid around both of my lungs.  I was admitted into the hospital where they did all sorts of tests.  They eventually removed just over two liters of fluid around my right lung.  There was at least that much or more in my left lung but they would not remove it due to risk of infection.  It was during this time they took me off the medicine that they thought was creating the fluid.

In March of 2016 I was placed on a different drug and up until August of this year, I haven’t had any side effects of the drug.  But, unfortunately due to becoming severely anemic, and after having several tests done, they found that I had a bleeding ulcer.  Oh, but it gets worse.  The medicine for the ulcer reduces the effectiveness of the CML drug.  We were told that it didn’t but it did.  During the first several months after taking the ulcer meds, my CML numbers started increasing.  After several months of this my oncologist decided that he had done all he could for me and that he was referring me to a bone marrow transplant team.  These were to be the darkest days of my life.

About the same time I was diagnosed, another young lady in my community was diagnosed with CML. She didn’t like the side effects the drug was causing so she stopped taking the drug.  Her CML escalated and she had to have a bone marrow transplant.  I followed her on Facebook through her whole ordeal.  She was in the hospital for six long weeks having this procedure. I remembered her ordeal when I was told that I would be having the same thing.

The doctor that I was sent to was not on the transplant team.  The hospital he is associated with is one of the best cancer research centers in the US but the doctor had a lot of growing up to do.  He was fresh out of college. In fact, I have a son that is not much older that he is.  My other oncologist has over thirty years of experience but like I said, this doctor is fresh out of college and from another country to boot.  Nothing wrong with that though.  What this doctor had in knowledge, he lacked in experience.  I saw this doctor about 4 times and it was enough to know that there wasn’t going to be a 5th.  He did have a couple of suggestions that I did get out of our visits.  He stated that I was not a good candidate for a bone marrow transplant and that I was probably taking way too much medicine.  He also mentioned that I was supposed to be taking my cancer meds with food, which at that time I wasn’t.

So, as of today, I’m back with my previous oncologist, my numbers are back where they need to be and most everything is where it needs to be.  I am working on getting disability. I have a hearing in January.  I’ve had to get a handicap place-card because of gout in my right foot.

So, as you see, my life has been somewhat of a roller coaster. It’s been up, then down then on the up side again.  I’ve been reading books and trying to listen to some easy jazz music just to help me relax a bit.

Sorry for the long post.

 

 

 

Living with CML

17 Wednesday Jul 2019

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

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Tags

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

Health Report

27 Thursday Sep 2018

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

≈ 2 Comments

Tags

Cancer, CML, CT Scan, Disability, Lungs, Test Results, Waterdropplet

WD1

For the past six months I have been on a new drug called Bosolif.  At first I was on 500 mg per day.  After a few months a test was performed and my numbers increased.  The medicine was not working.  Not only was it not working, I could tell that I had fluid around my lungs again.  Walking had started to become difficult.  With caution, my oncologist increased my meds by 100mg and he orered a CT scan to see how much fluid had accumulated.  After a week, the results of the scan had come back and, indeed, there was a small amount of fluid around my right lung but not my left.  According to my oncologist, if my meds were causing the fluid, it would accumulate on both sides at the same time and not just on one side.  I was diagnosed with broncitus a couple of weeks prior and he thinks that’s the reason for the fluid.  Since my increase in the meds, the last test results that came back showed that my numbers has fallen.  Nowhere close where they need to be but at least they are falling.

On a side note; I have finished my disability paperwork.  I submitted the online aplication a couple of days ago and sent in the hard copies today.  Hopefully I’ll hear something in a couple of months.

 

Tim

Today’s Thoughts 4/19/2018

19 Thursday Apr 2018

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

≈ 5 Comments

Tags

A1c, CML, Cycling, Exercising, health, Healthy Living, Outdoors, Walking, Weightloss

Got home late yesterday due to having to work later than normal.  I had my day all planned out before I got to work which included getting off early and trying to extend my mileage from 10 to at least 20 or more miles.  Didn’t happen.  I got to work and found out that I was going to have work the desk dispatching calls all day.  Which also meant I IMG_20180418_174749wasn’t going to be able to get any cycling in.  Not a total loss though.  I did stop at the track and got my 10,000 steps in for the day.

As much as I like getting out on my bike and ride, it’s important to me to get out and do something to enjoy the outdoors, even if it’s just walking on the walking track. Most of last year I just didn’t feel like getting out and doing anything.  Once I made it home from work, I didn’t have the energy to do anything but to shower and relax in front of the television.  I gained weight, my A1c went up and basically felt like crap. Now that I have my health back, for the time being, I’m taking advantage of it and getting out and doing something.  In the short time that I’ve been feeling better, I’ve been able to get out and ride, three times so far, I’ve gone to the track a few times and my A1c has come down a few points.  When I feel better I’m able to take better care of myself.

Stay Healthy!!

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

 

 

Me and CML

12 Thursday Apr 2018

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

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Tags

Cancer, CML, Medicine, Oncologist, Wordpress

Trying something a little different.  A little nervous about it.

Introducing ME!  Don’t know if I’ll do it again.

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