Category Archives: Cancer

Trying to Stay Up!

01 Saturday Oct 2016

Posted by in Cancer, Depression, Leukemia, Photography, Weight Loss

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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

Posted by in Cancer, Depression, Leukemia, Photography

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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

Posted by in Cancer, Family, Leukemia, Photography

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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.

Another Visit Part 2

14 Sunday Aug 2016

Posted by in Cancer, Photography, Weight Loss

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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

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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.

To Be Healthy Again

29 Friday Jul 2016

Posted by in Cancer, Cycling, Photography

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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.

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.

Patience is Not One of my Virtues!!

28 Tuesday Jun 2016

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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.