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

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Category Archives: Leukemia

It Sucks Getting Old :(

08 Friday Jul 2016

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

≈ 1 Comment

Tags

Cancer, CML, Doctor, Leukemia, Oncologist

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For several months now I have been undergoing a barrage of test by one doctor or another. If you’ve ever seen the movie National Treasure, it’s like one clue leads to another clue.  It all started with a personal evaluation that was performed on me back in March from my boss.  In the months prior to my evaluation I had made several costly mistakes.  Luckily they were all monetary and not personal injury.  During my evaluation my boss discussed with me that he was worried that either I would be harmed by my actions or the person I was working with would be harmed.  He also stated that until I was checked out by my physician I would be temporarily placed on light duty with any safety related responsibilities.   At first I was furious as you can imagine but the more I thought about it the more I realized he may be right.  Although I didn’t want to admit it I had been experiencing some forgetfulness but I had chalked it up to getting old.

The first test was with a neuropsychologist.  I failed miserably.  One test consisted of the nurse reciting a list of paired words, about 50 I think, that after she recited the list I was supposed to repeat to her one of the words that was paired too.  Example; Truck-Bread, Dog-Umbrella.  She would read Truck and I was supposed to tell her Bread.  I failed at this test.  There were several other tests that I failed at.  The results that were given to my primary care doctor was that I had three areas of disabilities, motor control, memory loss and multitasking.

Another test that was performed was on my feet.  I had been put in the hospital with influenza A and pneumonia.  After spending a week there I was released to spend another week at home.  While I was off I had an appointment with a neurologist in which I spent over an hour being hooked to electrodes that shocked my feet to find out just how numb they really were.  After the tests were performed I was given the diagnoses of diabetic neuropathy.  Hell, I already knew that.

During one of my visits with my oncologist I was given a test to check out my immunity because being admitted twice to the hospital in less than six months set off a couple of alarms.  He did a preliminary test and it came back showing signs of IgG deficiency (immunoglobulin G). I went back on Wednesday of this week to let them do a more thorough test.  I’ll find out the results of those test sometime next week.

Today I went to another neurologist that all i did was talk and answer a few questions.  A small word association test was performed and again I failed.  He asked me to remember three words and he would ask me later on to recite these words back to him. When asked a few minutes later I couldn’t remember the three words.  I saw the doctor for only a few minutes after which he wanted to do a blood test and an MRI.  The blood test was done downstairs but the MRI will have to be scheduled once the insurance company approves the test.

So, as you see I’m falling apart.  I’m not letting it get me down.  Just living day to day right now.

Happy Weekend!!

24 Friday Jun 2016

Posted by Tim Hughes Living with CML in Cancer, Leukemia

≈ 1 Comment

Tags

Cancer, Cats, CML, Doctor's Appointment, Howard Cosell, Oncologist

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This has got to have been one of the longest weeks in history.  After being off for two weeks, one of which was spent in the hospital, the other at home recuperating, working a full week and then off for another week; it’s been difficult for me to get myself out of bed and off to work.  Motivation has been the key.  With only .086 hours of PTO (Paid Time Off) I pretty much have to go to work or else I don’t get paid and with that the possibility of being disciplined is pretty much been my motivation to go to work.

The whole month of May was pretty much filled up with doctor’s appointments.  With the fact that I knew that I was going to take off a week in June, I wanted to make sure I had plenty of time left over for a cushion just in case I had some medical issues or one of my kids or wife, for that matter, got sick.  Not knowing that I myself would have to go back into the hospital for the flu and pneumonia didn’t help matters any. So, with that thought in mind I would always work over to make up for any time that I had to take off for a doctor’s appointment.  Made for a very long month.  Anyway, one of the doctor’s appointments was with a neurophysiologist. Not by my choice but my employers. It seems that my boss wanted me to go because of some mistakes that I’ve been making at work.  Some of these mistakes were quite costly but luckily none were any danger to me or to my co workers.   The appointment lasted for four hours and I failed several tests miserably.  I talked to the doctor that performed the tests the next day and he told me that I had some sort of mental disability.  He did not give me the diagnoses but told me that he would file a report and give it to my general practitioner.  It’s been over a month and I’m still waiting for the results to come in.  Another test that was performed was done while I was home recuperating.  It was an appointment to check my feet.  I spent two hours getting my feet shocked only for them to tell me what I already knew, Diabetic Neuropathy.

Back to the mental disability.  With being diagnosed with CML and taking a form of chemotherapy, I’ve been told, not by doctors but by other people to look into Chemobrain. Personally, I don’t think I have this because I haven’t had a bone marrow transplant.  But I do have most of the symptoms though.  I have noticed that my short term memory is not as good as it used to be and while I can remember some things deep in my childhood other memories during that same time frame I can’t remember at all.  At first I just counted it as getting old but after losing several arguments with the wife I have come to the realization that maybe it’s not just about getting old any more.  And with the current result from the neurophysiologist I tend to agree that I do have some sort of mental issues.  What can be done about it remains to be seen.

A bit of good news is that while I was away on vacation my oncologist called me with the results of my last set of tests.  It seems that my Bcr-Abl tests came back any my numbers were a whole lot lower.  In his words, “the numbers bottomed out”.  He didn’t give me the exact numbers but he did say that they have not been any lower since my diagnosis.  I can’t wait to go back in two weeks to see what the numbers actually are.

With all that’s happening in my life right now, especially with my health, my friends are all concerned that I would try to end it all.  I’m not sure as to why they feel this way.  I’ve never given them any cause for concern in that area.  At least I don’t think so.  All I know, there is no way there is any possibility of that ever happening.  If someone even remotely suggests that I committed suicide someone better be on the lookout for a murderer.  I’ve got too much to live for right now for me to commit something cowardly as that.

Time to Vent

03 Friday Jun 2016

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

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Tags

Alabama Theater, Ambulance, daughters, Flu, Graduation, Hospital, Pneumonia, Sick, Sick Time, Son, Vacation

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November 2015 I caught the flu and spent 5 days at home.  December 2015 had kidney stones in which I spent another week at home.  Last week of December, 1st week in January 2016 I spent 4 days in the hospital with some sort of chest infection in which I was off a total of 2 weeks off from work.  With all that time off from November 2015 to the first week in January I used all of my vacation time.  From January to now trying my best to build my time back up which meant for every hour I spent at the doctor’s office I had to spend an hour working overtime without pay to make up for the time lost. I have vacation planned for week after next and I’m not sure if I’m going to be able to take off because someone came into work sick with the flu and I caught it.

I had finally built my time back up to 77 hours but I got sick with the flu and pneumonia and had to spend a week in the hospital and another week at home recuperating. This was very costly not only money wise but I missed some things that I’ll never get back.

While at the doctor’s office Monday a week ago, I passed out because my O2 levels were so low that  I had to be carted off to the hospital via ambulance.  That within itself is quite costly.  Two weeks of vacation time gone, my vacation to Disney is in jeopardy because I won’t have the time to take off and the most costly of all was the fact that I was not able to go to my daughter’s graduation from high school.

I have the most inconsiderate co workers that anyone can have.  They always come to work sick and in most cases, I end up catching whatever they have.  They don’t care either.  All they want to do is brag about how much time they’ve got accumulated.  This is twice in six months that I’ve used up all my vacation time being sick and I’m so mad right now that I could take these guys and beat their face in with my fist.

Thankfully my wife and kids have not gotten sick from me being sick.  While I was in the hospital they took all the necessary precautions by wearing a mask and disposable hospital gowns.  I’m better now but easily get out of breath when doing the least little thing.  I’m scheduled to go back to work on Monday.

Rant over.

The above picture was taken after the graduation was over by my son.  I think he’s got a hidden talent in photography.  He did an awesome job.

 

Out of Shape :(

11 Monday Apr 2016

Posted by Tim Hughes Living with CML in Cancer, Leukemia

≈ 1 Comment

Tags

Fitbit, Treadmilll

After working all day and getting close to 15,000 steps on my Fitbit, I reluctantly got on the treadmill after eating supper.  In the past I have been able to reach speeds of 3.8 mph for 1.5 hrs but not tonight.  I started off at 3.2 mph and it wasn’t long before I realized I couldn’t keep up the pace.  I reduced the speed to 2.8 mph and tried to keep up for 30 minutes.  That was all I could do tonight.  I know it’s a start and I’ve gotta start somewhere  but I had no idea I was that out of shape.  I guess I’ll see how my feet do tomorrow.  Right now they’re a little sore but the true test comes the next day.

Thanks everyone for your kind words of support on my last post.  They are appreciated.

365 Day Photo Challenge 353/365 “Friday’s Failure”

18 Friday Dec 2015

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

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Tags

365 Day Photo Challenge, Failures, Pain Meds, Work

https://tchphotography.smugmug.com/Mechanical/i-Mttww8p/A

I got up this morning, pain was somewhat minimal.  I got a shower and started getting dressed when the pain started increasing.  I went ahead and got dressed and took my pain meds before I left for work.  The temperature had dropped and caused my windshield to be coated with a heavy coat of ice.  By the time I scrapped all the ice I was in considerable pain.  I was determined to make it to work my I just couldn’t make it.  I turned around just before reaching the interstate.  I made it home just as my wife was leaving for work.  I went inside and took two ibuprofen PM so I could at least get some rest.  I woke up at 2pm when my oncologist called to tell me that my medication had been approved by my insurance company. After a few phone calls to the pharmacy and to the drug manufacturer I went back to bed. It is now 10:30 pm and I haven’t been up long.  I’ve already taken my pain meds and I’m going to take a shower before going back to bed.  I haven’t eaten anything all day because I just haven’t felt like it.  Maybe I’ll feel better tomorrow.

“Life Goes On!”

365 Day Photo Challenge 352/365 “New Medication”

17 Thursday Dec 2015

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

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Tags

365 Day Photo Challenge, Cancer, CML, Medication, Sprycel

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I heard from my oncologist today and I’ve got a new drug to take for my CML.  The survival rate is no more than the previous drug but as long as it keeps me alive I’m good. It also has about the same side effects as the other so unless there’s something I don’t know about I guess I’ll be ok with it as well.

I stayed home again today with this kidney stone that has yet to pass.  I had to get up early this morning to take a pain pill but so far today I’m moderately pain free.  I’ll be going into work tomorrow regardless if I’m pain free or not.  I’m low on time so I have to go in.

I Lost it Today :(

17 Wednesday Dec 2014

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

≈ 2 Comments

Tags

Bad Mood, Bloodwork, Blurred Vision, Cancer, Challenges, Christmas, CML, Depression, Leukemia

Today was not a good day for me.  I guess all the troubles in my life finally caught up with me.

For those just finding out about this blog, I have CML, a form of Leukemia.  I was diagnosed with it this past February.  I’ve been taking Gleevec and until last week I thought I was doing pretty good.  My BCR AbL started off at 138 and had gotten down to .134 three months ago.  My last report last week the test showed that it went up to over 2. It was a big disappointment.  I go back in six weeks.

Last week was the beginning of my trouble when my 17 yr old daughter was involved in an accident.  It seems that an 88 yr old man pulled out in front of her.  My daughter is fine with the exception of some back pain in which she is seeing a doctor about.  This was my wife’s 14 yr old van that was totaled by the insurance company.  We do not really have the funds to get another vehicle at this time especially since Christmas is just around the corner.  Just don’t know what to do at this point.

And to add to already what’s going on I’m having eye issues and I’m going to have eye surgery the first part of January.

This is the Christmas season and it’s supposed to be a happy time.  It usually is but the last few years it get’s harder and harder to get into the Christmas spirit.  With my health the way it is and not knowing what the future holds it’s easy for me to get depressed.  I’m the father of three and I’m supposed to be strong and not show emotions but I’m here to tell you that it’s difficult for me to hold it in.  Especially today.

It was while at lunch today.  We were listening to the company choir sing some Christmas songs when it hit me.  I was remembering the times when my kids were younger and times were much different.  I got to thinking just how much longer do I have?  I was doing ok until the choir started singing a song that I haven’t heard since my childhood and that’s when I started to loose it.  Not wanting to show my emotions in public I had to get up and leave the table.  It took be several hours to get my act together.

Maybe tomorrow will be a better day.

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