• About

grayfeathersblog

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

grayfeathersblog

Category Archives: Cancer

Living with CML

17 Wednesday Jul 2019

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

≈ Leave a comment

Tags

BMT, Cancer, CML, Hospital, Leukemia, Worry

12439504_10153904551023684_2767351289995480728_n

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

The “List”

26 Tuesday Feb 2019

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

≈ Leave a comment

Tags

Chores, Cooking, Healthy, Outside, Privet, Retirement, Summer, Tasklist, Weather, Yardwork

_3TH3008

It’s spring down here in the deep south.  At least for now.  Cooler temps along with some rain expected next week.  For those that are keeping up, my to-do list is slowly getting shorter; and I do mean slowly. Being that the weather has turned a little warmer, I’ve taken advantage of it and I’ve been doing a lot of work outside.  My back yard is slowly showing itself again.  I’ve spent several days cutting Privet and dragging the limbs to the street.  My back yard has a slight incline so after cutting the limbs I  have to climb this incline so I’m easily winded and I have to take a lot of breaks.  A person in good health would have already finished with this project and moved on but it’s taking me a little while longer.  I’m still not finished with it.  The limb collector only picks up once every other week so I don’t want a pile of limbs just sitting there waiting to be picked up. So, I’ve been working on doing some painting in the meantime.

Like I’ve stated on an earlier post, I’ve started using a task list to help me stay on target.  I must say that it’s making a huge difference.  The weather has a lot to do with what task I work on but as long as the weather stays nice for a few days I’m able to get quite a bit accomplished.  If the weather is cold or rainy I’ll stay inside and concentrate on doing some housework or do some woodworking projects.

Cooking has always been something I like doing so since I’ve retired I make it a point to help the wife with the cooking.  When both of us worked, it was difficult for my wife to create dishes that were both healthy and quick.  She is tired most days when she gets home so her choices for dinner was usually something unhealthy.  Now that I’ve retired, I do most of the cooking during the week.  I do a lot of grilling, very little frying and some slow cooking in my crockpot.  Most of the items I cook is new to both me and my wife so it’s made dinner very interesting.

Life goes on!!

Denied!

04 Monday Feb 2019

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

≈ 3 Comments

Tags

Bird, Denied, Feeder, Social Security, Titmouse

_3TH3004

Three out of ten people who file for disability actually recieve disability the first attempt.  Unfortunatly, I was not one of those three.  Oh well.  I knew I would be denied.  I had a feeling.  I’ve already sent my paperwork in to an attorney and even he said it could take 18 to 24 months to get a hearing.  I’m not in a hurry.  Just taking every day one day at a time.

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

_3th0435-2

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.

Long Overdue

10 Thursday Jan 2019

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

≈ 3 Comments

Tags

Bird, Cancer, Chores, Dentist, Feeder, health, Photography, Retirement, Ulcers

_3th1080

It’s been since September since I’ve posted anything so I figured I’d do a little update on what’s been going on. First of all, I went to the dentist today and had some work done and I had to take a prescription pain pill to take care of the pain that I was in.  So, if this doesn’t make sense, that’s why. As stated in my last post, I’ve retired.  I can’t begin to tell you how happy I am about that. I get updates from one of my co-workers every once in a while and let me tell you when I get off the phone with him, it makes me so happy to think that I no longer work at that place.  The management at that place has taken a turn for the worse and it seems that I left just at the right time.  The stress that I felt while I was there is no more.  That within itself is worth retiring over.

So, what is my plan since retiring?  I’ve got several irons in the fire, none of which requires getting up and going to a regular job.  I was blessed with an excellent pension and my 401k didn’t look bad at all either.  I made an appointment before retiring with a financial planner and he told me that I had nothing to worry about.  In fact, I got a little raise since retiring so I think we’re going to do just fine.

On most occasions, I get up with my wife when she gets up to get ready to go to work.  I usually sit and talk with her while she’s eating breakfast.  After she leaves, I usually take a shower and go to the garage and work on some woodworking projects.  I take care of the laundry and try to have dinner cooking when my wife gets home from work.

Other things such as setting up my camera so that it can take pictures of the bird feeder have been another little project that I’ve been working on.  It’s the simple things in life that make it interesting.  My cats and I enjoy watching the birds in the morning while we’re sitting in the kitchen spending time with the wife while she’s eating breakfast.

On another note and this will be the last of this update for now.  My cancer numbers are starting to look pretty good but on the other side of that coin, my iron levels have started to plummet.  I’ve had to do two iron transfusions and had to have a colonoscopy and an endoscopy to find out where I’m bleeding out.  Ulcers, I’ve got two bleeding ulcers.  Another pill to add to my pharmacy list.

Thanks for taking the time to read and I’ll post again soon.

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

Retirement Is Close At Hand

07 Saturday Jul 2018

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

≈ Leave a comment

Tags

Cleaning, Cold, Fireworks, Lightning, Medical, Medicine, Photo, Photography, Retirment, Sinus, Yard Work

I’ve been absent of late and for a good reason.  Although the doctor stated during my last oncologist appointment that my medicine is not working, I’m still feeling pretty good so I’m taking advantage of it and getting some things done around the house.  With that being said, I had to increase the dosage by 100mg and it’s starting to take a toll on my breathing.  Not much mind you but just enough to where I know that eventually, I’ll have to have more fluid drained from around my lungs.

I’ve got 39 more days to work and boy am I ready.  It can’t come fast enough. I’m supposed to meet with HR on Tuesday to discuss my retirement and post-retirement insurance.  More about this later.

The last four years have really played havoc around my house.  I’ve been fortunate to have a wife who is willing to cut the grass around the house but the other duties have gone by the wayside. My deck on the back side of the house needed cleaning four years ago and now it’s, well, pathetic.  The deck was black with mold and some of the hand railings needed to be replaced.  For the last three weeks, I have spent the afternoons and weekends cleaning this deck.  I have finished with the inside now to do the outside and then paint or stain next.

I have found the time to do a little bit of photography in the last few months.  I’ve really taken a liking to lightning pictures.  I’ve spent hours waiting on a storm to come through just close enough away that it would make a good picture while staying far enough away that I won’t be a target for a lightning strike.  I’ve had a few storms to come through.

_2TH5315-2
_2TH5322

There was a Fourth of July celebration up the street and I was fortunate enough to take some pictures of some fireworks from my front yard.  I didn’t get all I wanted because at the same time I was trying to get my drone off the ground to video the event.  My phone kept locking up so I had to settle with just the pictures.

_2TH5609-2
_2TH5617-2

I am currently sick with a sinus infection.  I went to the doctor today.  The drainage is making me cough and my chest is hurting.  I had plans on washing my truck and cleaning the outside today but that didn’t happen.  Maybe I’ll feel like doing it tomorrow.

Until next time.

Stepping Out on Faith

22 Sunday Apr 2018

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

≈ Leave a comment

Tags

Birmingham Challenge, Competitions, Crimson Tide Ride, Cycling, Hot Hundred, Railroad Park, Sports

HH Ride_map1.jpg

I just signed up for the 29-mile Crimson Tide Ride in Tuscaloosa on July 28th.  I’ve ridden this ride several times but when this medication started messing with my lungs, I was no longer able to do so.  Right now, I feel like I can do it again.  It’s true that my longest ride so far this year has only been a little over eight miles, with the time left before the ride, I’m confident that I’ll be able to do the ride.  That is if my new meds don’t interfere.  If I continue to improve, I should be able to do the 36 mile next year.  I understand it has several more hills to overcome.

2018-04-21 10.57.36

Yesterday, our company participated in the Birmingham Corporate Challenge.  There were several events ranging from tug of war, corn hole, homerun derby, dodgeball, cycling and several other events. I participated in the 10k bike stroll.  It was a very simple route.  It was a three-mile loop that you had to do twice in which about a mile of it was a long hill.  This hill nearly whooped my butt the second time around.  Having forgotten my water bottle didn’t help matters any.  The event actually started with events on Thursday and ended about 6pm on Saturday.  Our company came in second overall last year.  It was sponsored by Chik fila and they gave out free chicken sandwiches.  I can’t wait to see where our company ended up in the standings this year.

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!!

← Older posts
Newer posts →

Blog Stats

  • 7,728 hits

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 442 other followers

Follow grayfeathersblog on WordPress.com

2015

February 2021
M T W T F S S
1234567
891011121314
15161718192021
22232425262728
« Dec    

Blog at WordPress.com.

Cancel

 
Loading Comments...
Comment
    ×