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~ Diabetes, Cancer Survivor, Cycling, Photographer, Exercise, College Parent, Twins, Boy Scout Leader, Life

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Monthly Archives: August 2016

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

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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

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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.

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