Category Archives: Leukemia

Trying to Stay Up!

01 Saturday Oct 2016

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Pleasant Grove High School

This blog was supposed to be able to help others that are going through the same stuff I am such as CML, Diabetes and being over weight, deal with life’s up’s and downs.  However, all I seem to be doing is bringing myself down.  How can I be helping others if I can’t seem to help myself.  I keep telling myself that once I get my health back on track I’ll be able to use  this experience to help others if and when they go through something similar.

First things first.  I’m still dealing with my labored breathing.  I think the last time I posted that I was going to see my cardiologist.  Well I did and he scheduled a echo cardiogram of my heart.  Really!  The problem is not my heart but fluid retention in  my lungs.  Anyway, had the test done and after a few days I got a call stating that all was fine.  Then he scheduled a CT scan of my lungs this past Thursday, nothing heard as of yet.  I have an appointment with my GP on Tuesday and my pulmonary on Wednesday.  Keep in mind that every time I have to take off to go to the doctor I have to work over to make up for the time lost.  I’m so sick and tired of having to stay late it’s about to drive me nuts.  Of course, that’s another story.

In the mean time…my employer is stressing me out.  I’m not exactly sure what I’ve posted about this but my boss has noticed some memory problems going on with me.  I, of course have denied all of it but it turns out that I am having some memory issues.  They’ve run a bunch of tests including some neurological tests that are not covered by my insurance company.  I’ll be paying for these tests for years to come.  But it seems that I’m having some short term memory loss.  The neuro psychologist  has even diagnosed me with amnesia.  Seriously??  Now my employer is wanting to demote me to a lower pay grade because I can’t do my previous job because of some safety issues.  If it wasn’t for the money issues I wouldn’t mind doing the job I’m doing now because it’s a whole lot less stressful.  As of yet the doctors have not determined why I’m having these memory issues.  They’ve done a MRI of my head and of course they didn’t find anything up there. (Pun) and they’ve pretty much ruled out my medications as well.

On top of all this the associate health nurse is telling me to seriously consider disability.  I’ve checked into it and can’t afford doing the things it’s asking me to do.  For instance, if you make more than $1300 a month you will be denied right off the bat. With two kids in college, one at home, a wife and all my bills there is no way I can live off of $1300 a month.  I have got less than 23 months before I can retire.  I told the nurse not to mention disability again to me unless she want’s to pay my bills while I’m off making less than $1300 a month.  She didn’t much like that comment.

Regardless how I feel, I try to do something fun at least once a week.  Tomorrow I’m going to my girls college for some homecoming festivities.  Getting to the place is not the issue, it’s once I’m there having to walk the seven to eight blocks to where I can view the parade, that’s going to be the issue.  I’ll be able to spend some time with at least one of my daughters tomorrow but the other one will be busy with band stuff.  I’ll see her in passing.
I’ve also bought a drone.  It’s a Phantom 3 Advanced and so far I like it.  I’m still scared that it will fly away on me and I’ll never see it again.  It takes pretty good pictures and real good video.  I’ve already been asked to do some aerial photography of some upcoming events so at least I’ll be able to sit down while I do that.

Anyway, that’s what’s been going on lately.  Maybe I’ll get some relief for my breathing soon.  We’ll see.

Round Robin With the Doctor’s

18 Sunday Sep 2016

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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.

Improving? Not so Much.

28 Sunday Aug 2016

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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

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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.

It Sucks Getting Old :(

08 Friday Jul 2016

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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

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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

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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

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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

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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

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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.