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Author Archives: Tim Hughes Living with CML

Round Robin With the Doctor’s

18 Sunday Sep 2016

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

≈ 3 Comments

Tags

Can't Breathe, Depression, Doctor Appointment, Fluid Build Up, health, Lungs

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I’m literally sitting here fighting for each breath I take.  I’ve been on the phone with three different doctors the last two weeks trying to get one of them to make a decision.  We’re all in agreement that we assume that my CML meds are causing fluid to accumulate around my lungs.  The problem I’m facing is finding a doctor willing to take responsibility and assisting me to drain the fluid.  I first contacted my oncologist thinking he would take me off my drug for a few weeks, he suggested contacting my pulmonary doctor.  My pulmonary doctor suggested for me to see my cardiologist.  I contacted my cardiologist and he suggested that I spend the weekend in the hospital.  I refused that option because my daughters were coming in for the weekend and that’s the last place I wanted to be.  So, I go see m cardiologist tomorrow at 3pm.  What the hell he’s going to do is beyond me.  The problem is not my heart it’s the fluid in my lungs.  I’m so put out right now I can’t think straight.

Life’s Changes

05 Monday Sep 2016

Posted by Tim Hughes Living with CML in Photography

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Changes, College, Creek, Family, Five Mile Creek, Girls, health, Life

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I believe Heraclitus that once said “The only thing that is constant is change.”  This is so true.  How we handle change is what’s important.  There are those that can’t deal with it and go into some sort of mental breakdown while others it’s like water off a duck’s back, or they hide it very well.  My wife is one that can either hide it very well or she has found a way to deal with it.  I guess I need to talk to her to find out how she does it. She does not, however, like the time change.  She fusses about it all the time.  Me, it doesn’t bother me one way or the other.  That’s what I call the little things.  Little things in my book doesn’t bother me so much.  It’s the big things that, if I sit alone in a room and have time to think about it, I worry about it.  So much so that it bothers me; I lose sleep over it, my attitude changes and my temper get’s shorter.

This year alone has been full of changes and misfortunes.  If I had to list them by importance I’d have to say having my girls moving off to college was one of the biggest changes in my life right now.  All the crap with my health is a close second.  But dealing with my girls gone is quite challenging for me to deal with. It’s what I’m used to I guess.  I’m used to seeing one of my girls sitting in the recliner when I get ready to leave for work in the mornings.  I’m used to the same daughter saying grace at meal times.  I’m used to the hug I’d receive right before I’d leave for work in the mornings and the smiles I receive when I got home.  Now, I see empty beds at bedtime, an empty chair at the dinner table and only a phone call late at night to tell me how their day went.  I guess you could say that it’s the beginning of the end of life as I know it.

Anyone with kids will tell me that I’m not alone.  This has been going on for hundred’s of years.  You’d think they would have come up with a cure for this by now.  I know it’s been going on for years but for me, it’s only been going on for five weeks, two days and thirteen hours. I really miss my girls.  I try not to dwell on the fact that they’re not here and that if  I need to talk to them all I got to do is send them a text and when they can they’ll call me back.  Another thing, they’re only an hour away from me.  It’s not like some kids and be hours by plane from their folks.  Oh gees, I’m glad that they’re close by.

I guess there’s one good thing about missing my girls is that while I’m missing them I’m not dwelling on the issues I’m having with my health. That alone will cause anyone to go into deep, dark depression.

I’ve starting trying to get out more and getting more active.  Yesterday I went on a small hike, about 200 yards or so.  I walked down to this creek that our boy scout troop helped clear a path to several years ago.  It’s being used and I even saw some fire rings being used. One thing that I saw that I didn’t like is the amount of trash left by the campers.  Why can’t people pick up their trash?  I can never understand that.  Oh well, thoughts for another story.

Improving? Not so Much.

28 Sunday Aug 2016

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

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Alabama, CML, Doctor, health, Kids, Leukemia, Million Dollar Band, Oncologist, Parents, Sick, University of Alabama

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I started back on my CML meds last Monday and to be honest I think my breathing has gotten a little worse. I’ve started climbing the steps at work a little more and trying to maintain at least 10,000 steps in a day. I spoke at length to my oncologist last Monday the day I started back on my Sprycell and he told me that the majority of the people who end up with water retention will do better at a lower dosage.  I’m now at 80 mg instead of the 100mg that I was once on.

I’ve decided not to just sit at home waiting to see if my lungs will fill back up with fluid.  I don’t really feel like getting out and doing anything but I feel that I’ve at least got to try  and get what little exercise that I can get.  I think it could only help matters if I get off the couch and do something.

Yesterday, my wife and I met our son at the university where my daughters are attending.  They’re both in the band, one plays the sax and the other is a band manager.  Yesterday was their parent preview show.  It was awesome seeing my daughter’s perform. I got to meet one of their roommates and enjoyed going out to dinner afterwards.  As usual it was hard for us to leave after visiting with them.

Today I went to my parents house to check on them as well as my bees.  It’s been at least two months since I’ve done either one.  The bee yard was grown up with weeds and it took everything I had to use my weedeater to chop down the weeds just so I could get to the beehive.  After about an hour of cleaning up I went and sat with my parents for a couple of hours.

It was hard to leave my parents. They are both getting up in age and their health is not as good as it used to be.  My mom had to have more surgery a couple of weeks ago on her diaphragm due to finding a hole where her colon and her intestine were coming through.  The doctors seem to think that this was caused by the accident they had back in February.

The above picture is of the band managers.  The young lady is my daughter.  What a  trooper.

Not Quite There but Better!

24 Wednesday Aug 2016

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

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CAT Scan, CML, Diuretics, Exercise, Lungs, Oncologist, Pills, Vacation Time

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It has come a time in my life where I have to ask myself will I ever be as healthy as I used to be.  It seems that every time I get better I have another set back.  Every time I gain some vacation time I end up sick and  using most if not all of it trying to get well again. It’s usually after I gain about two weeks of time when something happens and I lose down to a day or so.  Currently I’m at 24 hours so I’ve got about a month to go before I can reset the clock.  In the meantime I have to be at work and if I have any doctor’s appointments, which I do, I’ll have to work over to make up for the time I take off or else I’ll lose more time.

I’ve spoken to my oncologist and he’s instructed me to resume my CML meds but at a lower dose. I’ve having to cut my 100mg pill in half then cut one of the halves in half again.  That way I take one half and a quarter so hopefully that’s about 75mg. I don’t like doing it this way because I’m not sure I’m getting the dosage right.  The oncologist seems to think that I can get the pill in a 80mg strength tablet and that’s what he really wants.

To say that I’m not concerned about the fluid coming back into my lungs is an understatement.  I’m deeply concerned and I’m wanting to know if there’s a test that can monitor the amount of fluid being stored in my lungs.  Currently the only way is a CAT scan and I can’t keep going in for a CAT scan every few weeks. So, according to my doctor I’ll just have to monitor my breathing on my own.

With all the diuretics that I’m on I’m losing weight.  I’m down over ten pounds since I had the stents put in.  I am feeling better but the breathing is still not 100 percent. I am back climbing the stairs at work but only one floor at a time.  Next week I’ll add an additional floor. I still get quite winded but I’m able to recover much quickly.

I’m still plugging along and hopefully I’ll be able to do more exercise but right now I’m going to take it easy and not push myself too hard right now.  Definitely later though.

Caption This!!

21 Sunday Aug 2016

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

≈ 3 Comments

Tags

Camera, Cat, Feline, Photo, Photography

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What am I thinking??

First time in months since I’ve felt like picking up my camera.  I walk into my bedroom and I see one of my four legged kids next to my bed. I go get my camera and he gives me this look.  I wonder what he’s thinking?

Another Visit Part 2

14 Sunday Aug 2016

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

≈ 3 Comments

Tags

Cooking, Cycling, Eating Healthy, Exercising, Food, Heart Healthy Meals, Hearth Cath, Weightloss

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I got to thinking on the way home from the hospital about just how serious this past visit to the hospital was.  It was just happenstance that they found the blockage and even more so the fluid in my lungs.  I was thinking just how bad I have felt the last few months and that it was the sole reason for me not exercising.  Now that I had all this stuff done I should feel well enough to start walking more and hopefully get on my bicycle soon.

Now comes the hard part.  Wife and I had a discussion about food choices and eating better.  The wife does most of the cooking in the house and she is a working girl too.  She comes home and feels like she’s got to cook something so it usually ends up with hamburger helper or chicken fingers.  Looks like I’ll be searching for heart healthy meals for us to get acquainted with.

All these changes won’t come overnight.  My wife and I have got to start eating better and exercising more if we want to live long enough to see our kids grow up and have families of their own.

 

 

Another Visit Part One

13 Saturday Aug 2016

Posted by Tim Hughes Living with CML in Cancer, Photography

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Blockage, CAT Scan, Fluid Build Up, Heart, Heart CATH, Hospital, Lungs, Medications, Stents, Thoracentesis

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I knew it was only a matter of time before I ended up in the hospital again.  This makes the third time since January.  This time it was a little more serious than all the others.

I went and saw my cardiologist this past Wednesday and it was decided that because my breathing was so bad he would admit me to the hospital for a heart cath.  I was under the impression that the procedure would be done Wednesday afternoon after i was admitted but all they did was blood work. The next morning a heart cath was performed where they found the left artery 75% blocked.  Two stents were installed and I just knew that would help my breathing.  It did not help at all.

After returning to my room I started talking to my cardiologist and he informed me that he had called a pulmonologist in to see me.  A little while later I got carted off for several tests in which one was a breathing test and the other was a sniffing test.  Both of which I failed.  The pulmonologist came in later Thursday evening and basically told me that after seeing the results he had no idea what was causing my difficulties.  All he could tell me was that my diaphragm wasn’t working.

Friday morning I was carted off again for a CAT scan of my lungs.  After returning to my room I was told that I would have a procedure known as a Thoracentesis,  a procedure to remove fluid around my lungs.  At 2pm they removed 2 liters of fluid off my right lung.  I was told that the procedure wouldn’t be painful.  They lied.  I sort of reminded me of my bone marrow biopsy.  Maybe it was the way they did it but it was in the top ten as far as pain.

I never got to comfortable last night because of the pain but as long as I stayed still it didn’t bother me too bad.  I had to hook up my CPap tonight and the pain was still there.  I’ll be taking some pain meds tonight before going to bed.

My daily medicine count has increased by five.  That makes 17 pills that I have to take on a daily basis.  As long as they keep me alive and my insurance holds up I’ll keep taking them.

Good Food

30 Saturday Jul 2016

Posted by Tim Hughes Living with CML in Photography

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Alabama, College, Food, Girls, Grill, Steaks, Supper, Twins, Weekend

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No matter how poorly I’ve felt the last few days I made myself go to the butcher shop and purchase some nice steaks and grill them for supper tonight.  I wouldn’t have done it for no other reason than for my girls last weekend before leaving for college later on this week.  I’m really going to miss them.

To Be Healthy Again

29 Friday Jul 2016

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

≈ 3 Comments

Tags

Breathing, Cancer, Cardiologist, Cycling, Doctor Appointment, Heart

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This year has got to be the worst year so far as far as my health is concerned.  I’ve already been hospitalized twice this year and another visit is just around the corner.  This month alone I’ve been to a doctor five times for tests and other examinations.

Since my bout with pneumonia back in May, my breathing has gotten worse.  So much so that I can’t walk any distance or do any type of work without gasping for a breath.  Even sitting here typing this my breathing is labored.  I had a nuclear stress test last week as well as an ultrasound of my heart and both tests have come back without any abnormalities.  My regular doctor is supposed to be setting up an appointment with a cardiologist hopefully one day next week for a follow up.

I long for the day I’m able to walk down the hallways at work or hop on my bicycle for a twenty mile ride without feeling like crap.

This Made Me Laugh

09 Saturday Jul 2016

Posted by Tim Hughes Living with CML in Photography

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Top 10 Not Logical Images of Cats LogicThe dictionary tells us that there are only two types of logical arguments. One deductive, the other inductive. Why? Because these two types of logic provide the complete evidence of the truth of its conclusion. But what type of logic is cat logic… Top 10 Not Logical Images…

via Top 10 Not Logical Images of Cats Logic — The top 10 of Anything and Everything!!!

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