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

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Monthly Archives: June 2016

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Enough Said

30 Thursday Jun 2016

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Posted by Tim Hughes Living with CML | Filed under Photography

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Patience is Not One of my Virtues!!

28 Tuesday Jun 2016

Posted by Tim Hughes Living with CML in Cancer, Photography

≈ 3 Comments

Tags

Cancer, CML, Doctor, Lab Result, Oncologist

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I called my oncologist twice yesterday and didn’t hear a word from him.  I know Monday’s is his busy days so I didn’t get too upset but when he didn’t call me back first thing this morning I decided to give his office a call again.  I again left word with his receptionist and waited for his phone call.  He finally called me back about an hour later and after I told him what I wanted and why I was calling he sounded offended that I would question his earlier report.   Anyway, the information that is posted on the website is wrong.  The correct result is 0.0001% which is the lowest it’s ever been since my diagnoses.  The website has it listed as 1.0%, which is quite a bit different.

No News is Good News?

27 Monday Jun 2016

Posted by Tim Hughes Living with CML in Cancer, Photography

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Doctor, Test Resuts

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I called the doctor today, twice, with no response.  Once first thing as his office was opening and second about 4 pm this afternoon.  Monday’s is usually busy so I’ll keep that in consideration as to the reasoning why he didn’t call me back.  Maybe tomorrow.

Negativity Gets You Nowhere!

26 Sunday Jun 2016

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

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Anniversary, Beach, Condo, Doctor, Down, Family, Heat, Humidity, Kids, Sand, Steakhouse, Sunset, Vacation, Water, Waves

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I’ve been down on myself the last few weeks. I thought being on vacation would snap me out of it but the whole time I was gone I kept thinking of the time lost that I would have when I returned back to work.  The exciting news that I got from my doctor while I was away seemed to have helped but now that I have my doubts about the results I just can’t help but feel down again.

The heat has a lot to do with it I feel because I wanted to do something with my kids today being that they were home and not working but everytime I went outside I was just drained from the heat and humidity.  Plus, with all this humidity, it makes it difficult for me to breath.  The next two days the rain chances has increased to 70% so maybe after the storms roll in here at least it will cool things off a bit.

This coming Thursday, June 29th, I will have been married for 25 years.  I have already made reservations for Saturday at a place called Perry’s Steakhouse.  It’s a bit pricey but my wife is worth it.  Putting up with me and all my ailments; she deserves more than a pricey steak and a night on the town.  She’s going to flip when she sees the prices on the menu though. But maybe the flowers that I have ordered that will be sitting on the table when we arrive will take away some of the shock.  We don’t usually go out on the town like this.  It’s usually places like Logan’s steakhouse where you pay $12 to $15 for a steak or go to Cracker Barrel.  Those places are more to our taste.  If I get out of Perry’s for less than $200 I’ll be lucky.

July 4th is coming up in a week and I have that day off which means a three day weekend.  If I can just make it through this week.  So you see, I have a couple of things to look forward too.  With this in mind maybe I can get out of this slump that I’m in and I can have a brighter outlook.  It’s going to take me some time for me to build up more vacation time but at least my doctor’s appointments are down to a minimum right now.  That’s another thing that has me upset is the fact that right now if I have a family emergency I can’t do anything about it.  I can’t take off right now if I had too.  Tomorrow, if I’m not wrong, I should have 10 hours built up.  That’s not much but it’s a start.

I hope everyone has a great week ahead.

 

 

Confusing News!

25 Saturday Jun 2016

Posted by Tim Hughes Living with CML in Cancer, Photography

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BCR ABL, Confusion, Doctor's, Misinformation, Numbers, Oncologist

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During my week off on vacation I received a phone call from my oncologist saying that my numbers were at the lowest since my diagnoses nearly three years ago.  He was really excited to tell me the news.  Today, I got an email from my health insurance company stating that my numbers has went up to the highest that my numbers have been since 2014.  I’m really hoping that my doctor is right and my numbers has indeed went down and not up.  I guess I need to call him on Monday to confirm.

6/7/2016 1 Data SourceBCBSAL none
4/6/2016 0.1 Data SourceBCBSAL none
1/27/2016 0.55 Data SourceBCBSAL none
12/2/2015 0.32 Data SourceBCBSAL none
11/11/2015 0.63 Data SourceBCBSAL none
8/3/2015 0.05 Data SourceBCBSAL none
4/7/2015 0.08 Data SourceBCBSAL none
1/27/2015 0.1 Data SourceBCBSAL none
12/9/2014 0.22 Data SourceBCBSAL none
7/14/2014 0.73 Data SourceBCBSAL none
5/12/2014 27.71 Data SourceBCBSAL none
2/13/2014 133.48 Data SourceHealth plan Provider

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.

Vacation to Walt Disney World Parks

19 Sunday Jun 2016

Posted by Tim Hughes Living with CML in Photography

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Crowds, Epcot, Florida, Fort Wilderness Cabins and Campgrounds, Graduation, High Price Foods, Kids, Long Lines, Orlando, Vacation, Walt Disney World

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My first day back to work from a week long vacation is tomorrow and I should be going to bed but as luck would have it I’m waiting for a video to render on my computer.  Once that’s done I’ll eventually go on to bed.

The family and I  drove the ten hours back from Orlando on Friday.  We spent four days there and I must say we had a pretty good time.  Because of some breathing issues I had to cut my days a little short the last two days we were there.

We drove down on Sunday and if you’ve been following the news that’s when Orlando had the nightclub shooting which killed those 49 people.  Security was beefed up a bit and it took longer to get in so I’m told. And of course, we also learned of the tragic death of the two year old boy that got drug into the water and died.  Orlando had a trying week last week.

Like I said earlier, we had a pretty good time.  The lines were long, temps were high, food prices were high, some of the patrons were rude and the security was tight.  Nearly every ride my wife went on broke down at least twice during the ride.  Fast Trac was the only ride that offered another ride without having to start back at the beginning.

This trip was a graduation gift to my three kids.  Our son graduated from college and my two daughters graduated high school.  Taking three kids means that you have three opinions at which time caused problems within itself.  They either all wanted to do something different or just one wanted to something different.  I tried to stay neutral because this was their trip and I wanted to do what they wanted to do.  By Thursday afternoon I was tired of all the bickering I went back to the cabins so they would work it out themselves with me interfering.

We did encounter a couple of problems.  With the alligator incident Disney decided to close down all the beachfront activities which included the boat that left out of Fort Wilderness where we were staying.  If you stayed at Fort Wilderness Campgrounds the only transportation to the Magic Kingdom was to take the boat.  When the boy was attacked the transportation department didn’t realize this and stranded many guests.  Of course, you could hop a bus and go to another resort and catch another bus to Disney but that would take a lot of time and most likely they would lose their “Fastpass” time slot.  Communication between transportation and the resorts were non existent during this time and neither knew the answers to the questions being asked.  On Thursday I had a backstage pass to the steam locomotives and had to call many people just to get a ride from the campgrounds to the Magic Kingdom.  I made it just in time not to be late.

Most of the problems we had were personal and had to deal with it our own way.  When I say personal I mean being raised differently I guess.  An example;  When standing in line for a ride I would always give the person in front of me their “personal space”.  Meaning, I don’t want people breathing down my neck when we stopped or not bumping into me every time I stopped. Cutting in line.  We actually had adults send their kids in front of us and cut in line and once they were in place the adults would come up and join them.  I watched them do this several times by several different families.  Maybe that’s what they do in their countries but I have a problem with it.  Dress, or should I say lack of.  I saw teen girls wearing outfits that should only be worn in the presence of their own mother and no one else.  And another thing.  Just because you own the outfit doesn’t mean that you should wear it in public.  My kids are nearly grown and they were even embarrassed by them.

Well, the video is finished so I guess I’ll take my meds and go to bed.  All in all a good trip and would do it again if I had the money.  Next year will be a nice relaxing trip to the beach which is a lot closer and a lot less crowded.  I just hope my kids can work around their schedules and go with us.  They’re getting to the age now where they may not can go with us.

05 Sunday Jun 2016

Posted by Tim Hughes Living with CML in Cancer, Photography

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Back to Work, Flu, Pneumonia, Sick, Vacation, Work

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Tomorrow will be my first day back at work.  It’s been two weeks and I’m not real excited about going back.  I’m to the point that I just don’t care any more.  I had to use up all my vacation time and I’m scheduled to take a week of vacation in two weeks. I’m not sure how that’s going to work out.  My plans are to take a week off without pay. We’ll see how that goes.

It’s going to be rough getting up in the mornings because while I’ve been home I’ve been sleeping in to at least 8:30 or 9am.  I’ll have to get up at 6am to be able to get to work on time.  I think I can do this as long as they don’t have me climb a bunch of stairs or do a ton of walking.

June 4th Inspection — newbeejournal

04 Saturday Jun 2016

Posted by Tim Hughes Living with CML in Photography

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It’s been two weeks since I’ve done a hive inspection because I’ve been under the weather. Two weeks ago I noticed several small hive beetles so I knew before today’s inspection they would be worse today. I was correct. When I got home from the hospital last week I went ahead and ordered some traps […]

via June 4th Inspection — newbeejournal

Time to Vent

03 Friday Jun 2016

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

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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.

 

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