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

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Category Archives: Photography

3/16/2018 Oncologist Update

18 Sunday Mar 2018

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

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Bosulif, Cancer, CML, Doctor, Drug Card, Drugs, Family, Insurance, Medication, Prayers, Test

Oncologist Update: Because of some miscommunications with the insurance company, go figure, I have not been approved to be on my new medicine yet. I may end up walking the paperwork to the department myself if they keep losing it. Anyway, it’s been six weeks or more since I’ve had any CML meds and we, more so me than the doctor it seems, are starting to get a little concerned that my numbers might get a little high. If the insurance company approves the meds, it could take up to three weeks before my meds arrive. Nothing to do but wait. But, as luck would have it, the representative for the new drug was there in his office. He gave my doctor a card for a free 30 day supply which should arrive by Tuesday of next week. This should give my insurance company time to process my approval for this drug.

Bloodwork. It’s been six weeks since my last lab. My last one wasn’t good at all. Every one of my numbers was either very high or very low. Yesterday’s numbers were normal for the most part. This was in large part the effect of the drug I was on. The side effects just made my daily life impossible to deal with.

New Drug: Bosulif is the name of the new drug. Right now I’ve been on two of the most common and there are only a few left that is approved by the FDA. Thanks to Karen Davis-Hudson she eased my mind about some of the side effects that were mentioned in the insert. However, Karen, I think you mentioned that 1/10 developed fluid retention, my doctor said 4/10. Not that much of a difference. The other side effects I think I can handle.

The Good News: The doctor and I both agree that the fluid in my lungs is gone and we’re going to have a positive attitude that it will not return and that this medicine will be the last one I have to be on because this one will work. I can breathe, my color is back and most importantly, I feel good. So much so, that if the weather holds, I’m going to try to get my bicycle out one day this weekend.

This is all due to all the prayers that have been lifted up for me and my family. Thank you so much.

2018 Pinewood Derby

12 Monday Mar 2018

Posted by Tim Hughes Living with CML in Family, Photography

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Boy Scouts of America, Cub Scouts, Drone, Family, Pinewood Derby, Race, Son

I remember going to these things when my boy was in cub scouts. I would always end up working on the car because he would never do it the way I wanted him to do it.  We had fun working together anyway.  It was a good time for us.  He was at the, what I would like to call, the fun age.  We would always find something to do together.  He loved the scouts as did I.  This gave us a wonderful opportunity to be together plus it gave him an opportunity for him to be around kids his own age.  I really miss those days.  He’s grown now, moved out of the house not long ago and into an apartment not far from here.

Boy Scouts has changed somewhat since I was a boy scout those many years ago.  One thing that hasn’t changed is the program and what they have to offer.  You may not like what’s happened within the past few years, neither do I in some aspects but there’s one thing they still offer, and that’s a program that keeps the boys out of trouble and in doing so they have the opportunity to learn something.

I digress.  This article was supposed to be about the Pinewood Derby which was held yesterday.  Eighteen cars were entered from all over our district.  Nearly all the boys won some sort of trophy.  They had to win their division just be able to race their car in this race so they had to win something before they got there.  Everyone had a great time.  Hope you enjoy the video.

Another One Got Their Wings

11 Sunday Mar 2018

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

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Death, Funeral, Life, Wings

Today I got the news that a co-worker passed away.  We were kind of expecting it but still, nonetheless.  He’s had kidney problems most of his adult life and has had two transplants.  This wasn’t what he died of though.  He had a stroke during Christmas and never really got over it.  He’s had several mini strokes since then.  He left his daughter of 21 years.

This was the third one in about a month.  My 80-year-old aunt died from complications from diabetes, my bothers mother in law died from bone cancer and now my co-worker.  I hope this will be the last one for a while.

Memories of a Winter Day

06 Tuesday Mar 2018

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

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Dash Cam, snow, Winter, Youtube

Taken just before Christmas on my way home from work.  So afraid of another “Snowmageddon” which left over 1,000 people stranded at work for three days, our company decided to let us go home early.  We don’t get much snow down here in the deep south but when we do it shuts down the entire city/state.

A dash cam captured my trip from work to the first traffic light.  I edited it and added music to try to make it more interesting.

Hope you enjoy.

Update 3/4/2018

04 Sunday Mar 2018

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

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CML, Drone, Fluid Retintion, Medical, Medications, Phantom 3 Advanced, Retirement, Video

I know it’s been a while since I’ve posted an update and I do apologize for that. With my health such a roller coaster and my job is as crazy as it is well, I just haven’t taken the time to write.

First of all, let me say that I’m feeling better today than I have in years.  Seriously, with all the crap my body has been going through, it’s about time.  But, I have a feeling that it’s about to change for the worse again.

We found out that the meds for my CML was causing all the fluid to build up around my heart and lungs; more so the lungs.  In short, the oncologist took me off my meds and my pulmonologist took 1.5 liters of fluid off my left lung.  He left fluid in my right lung due to him not wanting the infection to set in on either or both the lungs.  A heavy dose of Lasix and now my right lung is clear of fluid.  In two weeks I see my oncologist and a new med will be prescribed and one of the main side effects is fluid retention.  Oh well, it was good while it lasted.

At this writing, I will be retiring on August 15th of this year.  After 32 years I’ve finally had enough, well, I’ve had enough long ago but I can officially retire when I turn 55 so I’m turning in my notice.  I’ve got a lot of hobbies so I know I will stay busy.

I’m working on a Youtube video about the tornado that went through our city back in 2011 and I’m doing some test shots with my drone.  Let me know what you think of it.  In the video that I’m working on, I will hopefully show some areas of our city that still shows some damage that the tornado left.  I will also show areas of major improvements that wouldn’t have happened if the tornado hadn’t visited our city.

There’s a lot more going on but I’ll post about it later.  I hope you enjoy the video.

 

Tim

Caney Creek Falls

11 Sunday Jun 2017

Posted by Tim Hughes Living with CML in Nature, Photography

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Hiking, Nature, Walking trail, Waterfall

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I’m a bit late posting this but I’ve just now got around to it.  This trail head in the Jasper/Double Springs area of the Bankhead National Forest.  If you’re ever in this area I would highly recomend this place.

The trail starts off down hill for about twenty yards or so.  Which is fine but you’ve got to come back up.  The trail itself is rather nice.  It’s farly wide for the most part but does narrow down to a single person for a bit before reaching the falls.

My wife and I followed this trail for about a mile and a half when we saw a young lady sitting on a log off to the side of the trail.  Surrounding her was another female and a male friend.  The lady on the log looked like she was having some heat related issues.  I offered one of my bottles but they refused any help from us.  Evedently, the hill going down to the falls was steeper than I had read.

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Going down this hill was tough on my legs but not near as tough as going up it.  Once to the falls you had to climb down to the creek to get any pictures of the falls.  There were several young people swiming and I feel sure the water was cold.  My wife didn’t venture down to the falls because she was afraid she’d fall.  The same thought had entered my mind as well but I just walked a little over a mile to get here and I wan’t going to let a little climb turn me around.

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As we guessed, the climb out of there was slow for me.  It took me a while for me to reach the flatter area because I had to stop and catch my breath several times.  Once we made it to the top of the hill it wasn’t so bad getting back to out truck.  With the exception of the last twenty yards.

For anyone with breathing issues or congestive or heart issues, I would not recommend this trail.  All others, have at it. Simeple two mile in/out trail.

 

Good to See Improvement

02 Tuesday May 2017

Posted by Tim Hughes Living with CML in Cycling, Photography

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Tags

Cycling, Life, Smells, Sports

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It’s hard to believe that just over a month ago I couldn’t walk to my bicyle much less ride it.  Today I completed a little under 14 miles and I’m really excited about it.  A couple of months ago I asked my cardiologist if I would be able to ride by bike again and he assured me that I would be back on it this Spring.  At that time I wan’t able to walk any distance at all without getting out of breath so no, I didn’t believe him.  Now look at me!!

I’m just now getting to the point where I’m enjoying my rides. When I first started I wan’t able to do anything but concentrate on my breathing.  I wasn’t able to look around and enjoy the beauty or take in the smells.  Today brought back a lot of memories when I used to ride all the time.  The smell of BBQ grilling on the grill, the smell of freashly cut grass and the smell of dead animals on the side of the road. (You got to take the good with the bad).  My breathing is still off but I know that will get better over time.

Untill next time, Happy Trails!!

 

Update 12/17/2016

17 Saturday Dec 2016

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

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Chronic Myeloid Leukemia, Hospital, Leukemia, Merry Christmas, Sickness

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It’s been over a month since I’ve been in the hospital.  I count that as a good thing.  I’m still very fatigued, short of breath, these nitro patches are giving me headaches and I get fairly dizzy when I stand up from a sitting position but other than that I’m feeling pretty good.  I have all my kids home at least for a little while so that’s making me real happy.

MERRY CHRISTMAS EVERYONE.

Have I Told You Lately How Much I Hate Hospitals??

15 Tuesday Nov 2016

Posted by Tim Hughes Living with CML in Cancer, Photography

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Breathing, Cancer, Diastolic Heart Failure, Fluid Retintion, Hosptials, Lungs, Medication

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To get it out of the way and I know everyone is tired of seeing pictures of the “Super Moon”,  here is the one that I spent over an hour trying to get the exposure correct.  Not exactly happy with it because it’s still a little out of focus.

A lot has happened since my last post and I’ll try to make it short as to not bore anyone.  But a brief recap is in order.  Back in August I had major breathing issues and I checked myself into the hospital thinking it was my heart.  They did a stress test, an echo-cardiogram and a heart heart cath. and found that I had 70% blockage in one of my arteries where they placed two stents.  My breathing had not improved any.

They then decided to do some breathing tests and ordered a CT scan.  They found fluid in my lungs.  They drew out 2 liters of fluid from my right lung.  I felt great afterwards.  They think that it’s my CML meds causing the fluid retention.

Two months later, in October, my breathing started getting bad again. My pulmonary doctor ordered another CT scan and found more fluid in my lungs.  He pulled just over a liter of fluid off my right lung.  Keep in mind that they haven’t touched my left lung.

Since all the fluid has started building up in my lungs, all three of my doctors (cardiologist, pulmonary and oncologist) agreed that a reduction of dosage in my CML meds.  It was reduced from 100 mg to 80 mg.  But my problem returned even quicker after my last fluid withdrawal.

Last Monday, November 7th, I couldn’t take it any longer.  I had to get some relief.  I couldn’t do anything without stopping and catching my breath.  Tuesday, after I voted, I went to the emergency room. I told them what I wanted them to do and they proceeded to do x rays. X rays showed nothing so they proceed to do another stress test and echo cardiogram.  But not after I sat in the emergency room all day on Tuesday.  I was finally admitted late Tuesday evening and they started doing the tests on Wednesday. Wasted a full day on Tuesday.

I was released on Friday evening but not after having another liter and a half removed from my lungs and another diagnosis of diastolic heart failure.  So, I’m on nitroglycerin patches to help me breathe and a whole lot of other meds as well.

 

Another Round

16 Sunday Oct 2016

Posted by Tim Hughes Living with CML in Cancer, Photography

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Breathing, Cancer, Drought, Fluid Retintion, Lung, Rain

DCIM100MEDIADJI_0011.JPG

Flying High Over Recovered Strip Mining Land

For those that have been following, my breathing had gotten pretty bad as of late.  I’ve been passed around different doctors for several weeks now and finally I was able to get a little relief.  I had to take a full day off last Thursday but I was able to meet with my pulmonologist and he pulled just a little over a liter of fluid off my right lung.  I feel that he could have pulled more out but every little bit helps.  I’m not breathing as well as I was when I got out of the hospital a couple of months ago but they were able to pull 2 liters out last time.  Their not exactly sure why I’m retaining the fluid but they have an idea that it’s the CML meds causing it. They weren’t able to test the fluid last time because the doctor didn’t tell anyone to test it.  This time he took several samples to send to the lab so hopefully they’ll be able to narrow it down as to the cause.

It’s been 28 days since we’ve gotten any rain here.  The picture above shows an area that is normally very green.  As you can see it’s all covered with brown grass.  Can’t wait until we see some rain.

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