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~ Diabetes, Cancer Fighter, Father of Twins, Kayak Fishing, Lover of Life

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Author Archives: Tim Hughes Living with CML

Over Zellous Hike

30 Wednesday Oct 2019

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

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Tags

Exercise, Hiking, Outdoors, trails, VLog, Weight loss

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I’m going to let the video speak for itself.  I will say this though, even though this was only a four-mile hike, the hills were tough for me.  I can go to the track and walk five miles and be sore a few days but walking in the woods with all these hills, that’s a little different.

http://www.tannehill.org/

 

Week Two My Weightloss Journey

28 Monday Oct 2019

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

≈ 6 Comments

Tags

diet, Excuses, Exercise, Keto, Weight loss, Willpower

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I gained a quarter of a pound during the week.  I fluctuated a pound or two throughout the week.  I have several issues that I’ve got to get settled.

1)  Scheduling.  I can’t seem to find a schedule that seems to work. I want to be able to work out the same time every day, eat more or less at the same time every day and do everything else that I have to do.  One thing that put a cramp in my schedule last week is that my truck stayed in the shop more than at home.  I did get a chance to walk to the shop a couple of times and I was able to get some steps in.  The shop is a little over a mile one way from my house.

2)  Willpower.  I love to eat sweets as does my wife.  There is always something in this house that calls my name late at night.  In fact, my wife made chocolate chip cookies last night.  I’d be lying if I said that I didn’t have any. In fact, most are still there, in a container sealed with a plastic lid.  I’m trying my best not to go into the kitchen.  She is a fanatic when it comes to chocolate, especially when it comes to that special time of the month.  I can and have told her not to purchase the stuff but alas, it somehow appears out of nowhere.

3)  Energy.  I have plans on getting out and going to the track or to the church and using their exercise equipment but when it’s time to go I find myself feeling tired and not wanting to go. If I do go, it’s like I have to force myself to get up and go.  Once there I’m fine. I want to go above and beyond my current skillset and I end up hurting myself.  I’ll give you an example.  Last week I went to the track to walk about 45 minutes.  I ended walking close to two hours because I wanted to push myself further and further.  I hurt for several days after that.  I just need to learn to take it easy until my body is ready.

I can do this.  I have no doubt about it.  After all, I lost close to 50 pounds the last time I stayed on this diet.  And, if I recall, I had the same trouble getting started last time.  The trouble is staying on a diet and keeping this weight off.

I have a hike planned for tomorrow and the next three days it’s supposed to rain.  I’ll try and visit the church gym one of those three days that it’s supposed to be raining.

Good News/Bad News 10/21 Update

21 Monday Oct 2019

Posted by Tim Hughes Living with CML in Weight Loss

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Tags

diet, Keto Diet, Weight loss

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Good news; I lost 7.5 pounds.  Bad news; It was more.  Yes, I had lost 11.2 pounds in one week and I know 1) It was mostly water weight and 2) It was not healthy for me to lose that much in one week.  I did well all week staying on a schedule but came the weekend. When I worked, it used to be right the opposite.  I did well on the weekends but terrible during the week.

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I got involved with hauling the band trailer and at least twice I week I have to haul it to football games and competitions.  Friday night I forgot my prepared meal and I had to find something to eat.  Nothing but concession food.  So, I grabbed a hamburger and ate just the meat.  About an hour later my sugar dropped.  So, back to the concession stand again and this time I got, I’m afraid to say french fries.  That was the start of the decline.  Saturday was bad and we won’t discuss Sunday.  I tried but evidently not hard enough.  Anyway, here it is Monday and I’m back on the diet.

Seven pounds is nothing to scoff about.  Staying on a schedule is the key.  Knowing what and when I’m going to eat ahead of time helps me stay in control.  Anything that comes along that is not planned throws me off.  This past week has taught me a lesson.  I’ve got to be prepared for anything.  I can put low carb meal bars in my backpack when going on those band trips and I can store these Glucerna shakes in my cooler as well.

Dieting Comes With a Price

17 Thursday Oct 2019

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

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Tags

Breakfast, Eggs, Exercise, Sausage, seasoning, steps, Track, Weight loss

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After spending an hour and forty-five minutes on the track I completed just under five miles and over 10,000 steps.  I’m so sore right now I can’t move my legs.  When I worked I average about 15,000 steps a day.  Now I’m lucky to get just over 2,000.

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My low carb diet plus exercise is working but you’ll have to wait until Monday to find out just how well it’s working.  My morning routine of scrambled eggs and sausage is about to get old but I’ve been doctoring them up with different spices to make them taste different.  If you’ve never tried “Slap Yo Mama” seasoning you need to try it.  It’s kind of spicy and the flavor stays with you for a while but I have to say that it makes a bowl of scrambled eggs quite palatable. I’ll try and post a picture tomorrow or the next day so you can see what it looks like.

The next few days will be busy and I doubt that I’ll reach any of my goals but that not saying that I won’t try.  I’ll get a few steps in while grocery shopping in the morning but I’ve got to go to a high school football game tomorrow evening.  Saturday afternoon I’ve got to pull a trailer for the high school band about two hours from my home so they can have their instruments for a band competition.  It will be about midnight on Saturday night when I get home.  Sunday might be a good day to get some steps in but we’ll see.

Weight Loss Update 10/15/2019

15 Tuesday Oct 2019

Posted by Tim Hughes Living with CML in Weight Loss

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Tags

Accomplishments, diet, Exercise, goals, Low Carb, Weight loss

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As I figured, it’s been a little difficult hitting some of my goals.  I’ve only reached half my 10,000 step goal for the last two days.  Tomorrow I plan on changing that.  With my daughters having a birthday celebration on Sunday, we still have cake and pie laying around.  Be proud of me because I haven’t had any so that’s a huge accomplishment.  I haven’t had any carbs to amount to anything in two days.  Another big accomplishment.  Even though I’m not getting the exercise in like I want, the scales did see a smaller number this morning.

Day One! My Weight Loss Journey

14 Monday Oct 2019

Posted by Tim Hughes Living with CML in Weight Loss

≈ 12 Comments

Tags

Apps, Blood Sugar, Diabetes, Fitbit, goals, Insulin, Journey, Low Carb Diet, Measurements, MyNetDiary, Overweight, Weight loss

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Good Morning!!  Today is the day that I start my weight loss journey. Posting these pictures are the hardest thing that I’ve had to do.  I can’t stand to see myself in this shape.  What better way to start a diet right?

I have weighed and taken my measurements this morning. I’m not too surprised at what I see.  It could and has been worse.  I’ll post everything later on in this post. My plan is to weigh every day and take my measurements once a month.

The Plan

I have been on hundreds of diets in my lifetime.  The only one that really works for me is the low carb diet along with exercise.  Another thing that I have found that works is being able to track my intake as well as my exercise.  One of the best ways is through some apps that I can  use on my phone. I have a couple of apps that I like. One is Fitbit and the other is MyNetDiary.  Both of which have similarities but differences as well. The MyNetDiary app allows me to track my insulin and my blood sugar as well.

Fitbit offers a way to track your exercise on a daily basis.  It counts your steps for which you can set different daily goals.  The default is 10,000 steps. It counts stairs or sets of stairs should I say, it counts the total miles that you’ve walked in a day, it counts the calories that you’ve burnt or used and if you want, it will even count the hours of sleep you had the night before.  Each one of these have a goal that you can set.

So, let’s get into the plan a little deeper.  Like I said earlier, I will be on a low carb diet.  I will stay at or below 2,000 calories/day. And by way of the Fitbit, I will try to get at least 10,000 steps per day and at least if not more than 30 minutes of exercise per day.

I will log everyday but not necessarily on here. You can though, expect a weekly report.  If you would like to track my progress more closely then you can request to join my Fitbit group.  To do so all you have to do is send me an email at timhughes1963@gmail.com and I”ll hook you up.

As promised, and I’m embarrassed to say, here are my measurements.

  • Waist  43.5
  • Chest  45
  • Thigh  23
  • Calf  17.5
  • Neck  18
  • Weight 280

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Well, there you have it. Like I said, I’ll post updated pictures about once a month to see if you can see any changes and I might post some weekly stuff as well but I’ll try not to make them boring.

I hope some will follow this journey with me.  I really think this will help me to stay on track.  I nearly forgot, my weight loss goal for the three month time period is 15 pounds.  I have no doubt in my mind that I will be able to reach this goal.  I will have to stay on my diet in order to reach it though.

Wish me luck.

 

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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Tags

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

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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 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.

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.

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