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Category Archives: Cancer

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

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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.

.

 

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!!!

 

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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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.

 

 

 

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.

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