Category Archives: Leukemia

It’s a Beginning

19 Wednesday Aug 2020

Posted by in Cancer, Cycling, Diabetic, Leukemia, 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!!

Life Goes On!

17 Friday Jan 2020

Posted by in Cancer, Diabetic, diet, Leukemia, Weight Loss

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_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 in Cancer, Leukemia, Photography, Weight Loss

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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 in Cancer, Disability, Family, Leukemia, Photography

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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 in Cancer, Leukemia, Photography

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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 in Cancer, Family, Leukemia

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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 in Cancer, Leukemia

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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

Denied!

04 Monday Feb 2019

Posted by in Cancer, Leukemia, Photography, Retirement

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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 in Cancer, Leukemia, Photography

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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.

Long Overdue

10 Thursday Jan 2019

Posted by in Cancer, Family, Leukemia, Pets, Photography, Retirement

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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.