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Category Archives: Cancer

Another Year Older

20 Saturday Aug 2022

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

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Birthday, Cancer, health issues, weight gain, Weight loss

A peaceful time and place

I turned 59 a few days ago. I did not go into a dark, deep depression. It was just another day for me. As many health problems as I have, I consider it a blessing just to wake up in the mornings. My wife, on the other hand, has an issue with each birthday she comes across. She’s a little over a year older than me and when she turned 60, let’s just say that she turned into a different person. It took a few days for her to get out of her slump. I’m not looking forward to next year.

I know I’ve written about it before but one of my health issues is that I’m having issues with my breathing. This has been an ongoing thing for several years. It started off as a side effect of one of my cancer medications. The medication was causing fluid to build up around my heart and lungs. I had to have fluid removed from around my lungs on four different occasions totalling up to around 5 liters. The first time I had it done they weren’t sure what was causing my breathing issue and it took several weeks of testing before they found out. During this time I wasn’t able to do much of anything without getting out of breath. Even walking a short distance became a struggle. Remember now, I was still trying to work through all of this.

Like I said, this has been an on going struggle for a couple of years now but after several medication changes it got better. Now it’s back but with a difference. There is no fluid around my lungs. X-rays have proved it. As with the other times, my weight would go up dramatically, and it’s doing the same thing now. I’ve gained upwards around 30 pounds in about a months time. That’s not normal. I’m on mediation to help relieve the fluid but I ran out last week. I had to wait until this week before I could get it refilled because of the insurance.

I think a big contributor to this is salt. I’m supposed to be on a low sodium diet but that’s hard for me to do. I’ve greatly reduced the amount of salt but I need to reduce it some more. Another thing that is not helping is, of course, my diet. I’ve got to do better. I’ve committed myself to a weightloss program for the next six months. But, until I get this fluid undercontrol, I will just continue to gain weight. Losing weight for me right now will definitely be a challenge. One, I get out of breath so easily so walking is a challenge even the treadmill will be a challenge. Two, the fluid. If I only knew the cause then I might could do something about that.2

On August 15th, my birthday, I weighed in at 287.2. On the 16th I weighed 287.4, 18th 288.5, 19th 290.5, also on the 19th I received my medication and the next day, the 20th I weighted in at 286.6. Of course I peed every thirty minutes or so. I haven’t weighed in this morning so I don’t know if I’ve lost any weight or not. BTW, I know I’m going to get some people telling me not to weigh everyday but this is what my cardiologist wants me to do. I should weigh about 275lbs once I get all the fluid off.

I’m planning on posting weekly to let everyone know how I’m doing on my weight loss.

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.

Good Evening!!

02 Thursday Jun 2022

Posted by Tim Hughes Living with CML in Cancer, Cycling

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Bike, Breathing, Cancer, Tires

Like I said earlier today, I’m still here. I kept thinking that I needed to post something but as always, I got busy with something else. I’ve got a bit of bad news to share. The breathing problems that I’m having are not caused by my heart or fluid in my lungs. What’s worse is that they don’t know why I’m having these issues. I can’t walk into my home and climb the one flight of stairs without becoming winded.

Not so long ago I was riding my bicycle twenty miles a day. Not any more. My son now is riding my bike where he lives. At least my bike is getting some mileage on the tires.

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

Much Needed Update

20 Sunday Dec 2020

Posted by Tim Hughes Living with CML in Cancer

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Cancer, Doctor Appointment, Exercise, Weight loss

A lot has gone on since my last update. I’ll try to limit my discussion to one or two items as so not to bore you.

My last Oyncologist report was good but on one of the tests shows that my Creatine levels were high so off to the nephrologist I go. Wwe illinated some meds and reduced my lacix but that didn’t help. I was told to lay off my lacix altogether but when I did that I gained nearly ten pounds in a week. Cause? Fluid. Fluid has been my advasary for quite some time. I go to the gym twice a week, I diet all week long, I drink at least 64 oz of water a day but my weight remains about the same each day. As long as I’m on the lacix I’m okay but when I go off it I gain weight. But, on the other hand, while I’m on the lacix I don’t lose weight no matter how hard i try. This has been going on for a couple of months now.

I had a conversation with my cardiologist the other day and he said that he didn’t want me to get my heart rate much above 130 and I’ve been trying to abide by that. It really doesn’t take much to get my heart rate up and when it does it stays around 125 to 135 and that’s when I’m on the treadmill or spin cycle. I usually try to stay on those machines for at least thirty minutes each. When I’m working out with my trainer he has my heart rate up to nearly 120 at times.

Stay tuned and I’ll tell you about my recent eye surgery.

Made my Goal!!

06 Sunday Sep 2020

Posted by Tim Hughes Living with CML in Cancer, Cycling

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Cancer, Cycling, Kids Cancer

As part of The Great Cyclel Challange, a cycling effort to raise money to fight kids cancer, I have set myself a goal to ride 50 miles a week throughout the month of September. My goal for the event is just 100 miles because at the time I just didn’t think I could ride that much due to not riding any for about a year. It has become apparent that I may want to up my main goal to 200 miles.

I was short milage last week because I had broken a spoke. I’ve never replaced a spoke nor did I have any spokes to replace it with. The guy at the bike shop stated that it would be the 9th of September before I’d get my wheel back. I told him why I needed it back sooner but he didn’t have the same concern that I had. I was able to get the wheel back a lot sooner than expected so that meant that I had at least 23 miles that I had to ride to reach my 50 mile/week goal. Yesterday I road a little over 25 miles which made my weekly goal of 51.98 miles.

The goal starts over today but I’m doing a recovery day. Yesterday came with a small price. I went to stop and I couldn’t get my left foot unclipped from my peddle and down I went. Banged up my left knee pretty bad. I’ve been hurt worse but I’m going to take it easy today. Maybe I’ll spend the afternoon cleaning the bike. It’s gotten quite dirty over the past week of riding.

https://greatcyclechallenge.com/Riders/TimHughes

It’s a Beginning

19 Wednesday Aug 2020

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

≈ 1 Comment

Tags

Cycling, goals, Weight loss

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When I started riding back in 2013, I rode a total of 1700 miles.  I know, to some of you that’s a drop in a bucket but I was pretty proud of my accomplishment.  2014 is when I was diagnosed and because of my health issues, I was only able to ride 530 miles.  I was able to increase my mileage somewhat to 890 miles in 2015.  2016 was a different story.  I stayed in the hospital for several weeks because of complications and I never had the energy nor the strength to ride therefore I rode zero miles that year.  In 2017, I was determined to start again and I did get a decent start with 150 miles but it soon faded because I was plagued with complications again.  In the next two years, I was lucky to get 100 miles or less because of fatigue and weight issues.  Because of this challenge that I’ve signed up for, I’ve pretty much-given caution to the wind and I’m going to ride if it kills me.

Today I was able to ride six miles, most of it pretty well.  I did have some issues going up against some steep hills but I think once I lose some weight and get more in shape, I’ll get better with the hills.  The only way I’m going to get better is to keep doing it.  In 2013, I had worked up to 25 miles every time I got on my bike and I was riding close to four days a week during the Spring and Summer. There’s no way I can do that now but that’s my goal.

Stay safe everyone!!

Quarantined

16 Monday Mar 2020

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

≈ 1 Comment

Tags

Flu, Quarantined, Sickness

My wife has come down with the flu so I’ve been quarantined for seven days.  That means seven days without going to the gym.  I’m glad I went ahead and bought that treadmill.  One of my daughters is here while she’s on spring break, she’s also quarantined.  In fact, her college has made the determination that school is canceled until further notice or at least until this virus is contained.  We have no idea how they’re going to do graduation.

My wife was diagnosed today and was given several shots.  I, as well as my daughter, was given a prescription for Tamiflu which I’ve already taken one.  Right now I feel fine.  My wife is not feeling well.  She has a sore throat, low-grade fever, and a dry cough.  If her condition worsens she has the paperwork to go get tested for the virus.  The doctor does not think it’s anything more than the flu.  I know that if I get the flu, because of my health conditions, I’ll probably be admitted into the hospital.  That I do not want.  I’d rather stay at home and let it run its course.  I know I”ll get more rest that way.

I hope everyone stays well out there.

I Joined a Gym Today!

19 Wednesday Feb 2020

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

≈ 8 Comments

Tags

Accountablility, BMI, Body Fat, Exercise, Gym, Overweight, Soreness, Trainer, Weight loss, workout

Well, actually I joined last Friday but I hired a trainer today.  I had no idea a trainer was so expensive.  Between the cost of joining a gym and signing up for a trainer, I’m spending over $300 a month.  Wow, that’s a lot of money.  But, if I can get in shape and lose this weight it will be worth it.  The gym membership is right at $40 a month for a year.  The trainer is $289 a month for six months.  I figured I could do without a few things for six months.  I will be seeing a trainer twice a week for an hour.  I had my free assessment today and the trainer walked me through the paces trying out all the equipment and letting me get familiar with them.  We didn’t really work out per se but I can tell we worked out. My main issue and I made sure I told the trainer this, is my breathing. 

I have three main causes of my breathing issues. One is I’m really over overweight.  286 to be exact.  My body fat is close to 40% and that’s really bad. Two is I have congestive heart failure.  My heart doesn’t pump enough blood through my body to carry enough oxygen needed when I exercise.  And three, the medication that I take for my CML causes fluid to accumulate around my heart and lungs.  When I have an issue with this it causes bad breathing problems.  Luckily, I haven’t had any issues with this since last August.

My plan is to work out three days a week, two of which will be with a trainer.  Funny thing is that my trainer will be a young man that was in my scout troop.  His mother also works there.  I just hope he doesn’t try and get me back for all those times I made him work.

I”m really looking forward to working out and getting back in shape.  Maybe doing it this way I will be held more accountable being that I’m forking out all this cash. My goal is to reach 225lbs before September of this year.  My short term goal is to get down to 275 so that I can get back on my bicycle.  It has a weight limit so I don’t want to get on there and break it.

I’ll try and post something every Friday to keep everyone updated on my progress.

See you then.

It Was A Tough Decision

17 Friday Jan 2020

Posted by Tim Hughes Living with CML in Cancer, Diabetic, Disability, Retirement

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Diabetes, Disability, Work

WD1

February 14th, 2014 was a date that I will never forget.  One reason is that it’s the date that I asked my wife of 28 years to marry me.  She said yes, obviously.  The 14th was also the date that I was diagnosed with CML, Cronic Myeloid Leukemia. My life has not been the same since.

Prior to being diagnosed, my weight had increased over the years and my diabetes had gotten out of control. My doctor sat me down and told me that I had better start doing something about it or I wouldn’t live to see my kids graduate high school.  That woke me up a bit.  I started watching what I ate, I started walking some and a friend of mine got me riding my bicycle.  In 2012 I started riding my bike religiously; up to 20 miles a day and up to 30 miles on the weekend.  Even after my diagnosis of CML I kept riding.  In 2015 I rode over 7,000 that year.  But that would soon change.

In 2016, I spent a total of four weeks in the hospital.  Not all at one time but through the year.  My cancer meds were causing fluid to be collected around my heart and lungs.  This was also the time I was diagnosed with congestive heart failure and diastolic heart failure.  This was also the time that my vision got blurry and I was diagnosed with diabetic retinopathy. I had to take injections in each eye to remove the blood that was pooling up behind my retina.  Because of all my health issues, I had to take off from work a lot because of doctor’s appointments and hospital stays.  Some of the meds I was on also caused memory loss and I started making mistakes at work.  One was a bad mistake and I was given a choice to either get fired or take a lower position.  I took the lower position which I also got lower pay.  Since 2016, I have been in the hospital at least 2 times a year spending at least 4 days each time.  I missed my daughter’s high school graduation because I was in the hospital with the flu and pneumonia.  I also missed my wife’s birthday twice because of hospital stays.

Some years back the company I worked for raised the age at which you could retire.  Because I had been there so long, I was grandfathered in and I could retire at the age of 55 because I had over 30 years of service. When I got grandfathered in, I had 42 months until I could retire.  I counted each day.  I couldn’t wait.  On August 15th, 2018 I retired.  I retired because I couldn’t do the work they were asking me to do.  My memory had gotten bad, I couldn’t walk without having to stop and take a breath and it was taking me too long to complete my jobs.  I knew if I didn’t retire I would eventually lose my job.

Since I was diagnosed in 2014 with cancer, I was asked several times why I didn’t try to file for disability. For me, disability is for someone who can’t work.  Even now I still think I can do something.  In reality, I know I can’t.  At my age, now 56, I doubt anyone will hire me with all my health issues.  It took some convincing from my wife and some of my other family members, I filed for disability in Septemeber of 2018.  Of course, with any filing, the first attempt is always denied, at least that’s what I was told.  And with that, my first filing, I was denied.

The simple fact that I can’t do anything but short term because I get so out of breath.  Walking, climbing stairs, going up an incline, carrying anything of any distance; things such as these I get so tired with fatigue and afterward I have to go and lay down for a while to get my energy back.  I can’t see any employer letting me go lay down after I do a job.

So, I got denied.  I immediately called a lawyer that had been highly recommended to me. When I filed for disability myself, I had to send in a lot of documents from all the doctors, the hospitals and such that I had.  It took me about two months to gather all of the information.  After about a month after I filed, they wanted more information.  Another month goes by gathering more information.  So, I had saved all of the documentation that was requested by the Social Security office and I sent all the documents I had saved to my lawyer.  After one year and six months, I had my hearing with the Social Security judge.

I met with my lawyer right before the hearing and he basically told me what not to say and what to say to the judge.  He told me to tell the truth and to tell him exactly what was going on, and I did.  They had a doctor on the phone that was representing the Social Security office.  To say that I was concerned would be an understatement.  My lawyer tried to calm me down because he could tell I was nervous.  The judge asked me a series of questions all of which I answered the best way I could.  The judge then turned to the doctor on the phone.  My anxiety levels hit the roof.  The judge asked him a series of questions regarding my work record, my work skill level and then he started asking him questions like, can he lift 50 pounds, can he crawl on his hands and knees, can I stand over thirty minutes without difficulty, can I sit for thirty minutes without difficulty.  The list went on and on.  To my surprise, the doctor said NO I can not do these things.  The Judge thanked him for his service and said I’m done.  That’s all I need to hear.  And with that he said we’re done.  I was in his chambers for less than 10 minutes.  The guy before me was in there for nearly an hour.

After I left the judge’s cambers my lawyer came and spoke to me.  He said that he felt really good about my case.  I am to call him in three months.  The decision could take up to six months.  But here is the kicker.  If I receive disability, I am supposed to get back pay from the date I filed or somewhere near that date.  He mentioned a figure of $2,100 a month for the backpay as well as my monthly payment.  I know he’s supposed to either get 25% of the back pay or $6,000, whichever is less.  I have a lot of need for this money so I hope I get it.

After all this, I still think that I don’t deserve disability.  I know a lot of people who are in worse shape than I am and they can’t get it.  The system is totally screwed up.  I know I have issues but I feel like I can still do something.  I’m not sure what but I think there is something out there that I can do.  The trouble is getting someone to hire me.

.

 

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