Tag Archives: CML

3/16/2018 Oncologist Update

18 Sunday Mar 2018

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Oncologist Update: Because of some miscommunications with the insurance company, go figure, I have not been approved to be on my new medicine yet. I may end up walking the paperwork to the department myself if they keep losing it. Anyway, it’s been six weeks or more since I’ve had any CML meds and we, more so me than the doctor it seems, are starting to get a little concerned that my numbers might get a little high. If the insurance company approves the meds, it could take up to three weeks before my meds arrive. Nothing to do but wait. But, as luck would have it, the representative for the new drug was there in his office. He gave my doctor a card for a free 30 day supply which should arrive by Tuesday of next week. This should give my insurance company time to process my approval for this drug.

Bloodwork. It’s been six weeks since my last lab. My last one wasn’t good at all. Every one of my numbers was either very high or very low. Yesterday’s numbers were normal for the most part. This was in large part the effect of the drug I was on. The side effects just made my daily life impossible to deal with.

New Drug: Bosulif is the name of the new drug. Right now I’ve been on two of the most common and there are only a few left that is approved by the FDA. Thanks to Karen Davis-Hudson she eased my mind about some of the side effects that were mentioned in the insert. However, Karen, I think you mentioned that 1/10 developed fluid retention, my doctor said 4/10. Not that much of a difference. The other side effects I think I can handle.

The Good News: The doctor and I both agree that the fluid in my lungs is gone and we’re going to have a positive attitude that it will not return and that this medicine will be the last one I have to be on because this one will work. I can breathe, my color is back and most importantly, I feel good. So much so, that if the weather holds, I’m going to try to get my bicycle out one day this weekend.

This is all due to all the prayers that have been lifted up for me and my family. Thank you so much.

Update 3/4/2018

04 Sunday Mar 2018

Posted by in Cancer, Leukemia, Photography

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I know it’s been a while since I’ve posted an update and I do apologize for that. With my health such a roller coaster and my job is as crazy as it is well, I just haven’t taken the time to write.

First of all, let me say that I’m feeling better today than I have in years.  Seriously, with all the crap my body has been going through, it’s about time.  But, I have a feeling that it’s about to change for the worse again.

We found out that the meds for my CML was causing all the fluid to build up around my heart and lungs; more so the lungs.  In short, the oncologist took me off my meds and my pulmonologist took 1.5 liters of fluid off my left lung.  He left fluid in my right lung due to him not wanting the infection to set in on either or both the lungs.  A heavy dose of Lasix and now my right lung is clear of fluid.  In two weeks I see my oncologist and a new med will be prescribed and one of the main side effects is fluid retention.  Oh well, it was good while it lasted.

At this writing, I will be retiring on August 15th of this year.  After 32 years I’ve finally had enough, well, I’ve had enough long ago but I can officially retire when I turn 55 so I’m turning in my notice.  I’ve got a lot of hobbies so I know I will stay busy.

I’m working on a Youtube video about the tornado that went through our city back in 2011 and I’m doing some test shots with my drone.  Let me know what you think of it.  In the video that I’m working on, I will hopefully show some areas of our city that still shows some damage that the tornado left.  I will also show areas of major improvements that wouldn’t have happened if the tornado hadn’t visited our city.

There’s a lot more going on but I’ll post about it later.  I hope you enjoy the video.

 

Tim

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.

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.

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.

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.

365 Day Photo Challenge 363/365 “Feeling Miserable”

28 Monday Dec 2015

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This is going to be short and sweet.  I’ve got a headache that I’ve had for several days and today my chest started hurting when I breath. These are all  listed side effects of the new meds.  I called my oncologist today and he has taken me off the meds for a week.  I’m hoping that I’m coming down with a cold or something and it’s not my new meds.  If it’s not one thing it’s another.

365 Day Photo Challenge 356/365 “To Be Pain Free For a Day”

21 Monday Dec 2015

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I was thinking earlier this afternoon when the last time I had a day that I went pain free.  Yesterday.  I would have to say yesterday I was relatively pain free for a day.  Lately it’s been my feet giving me problems and now my kidneys.  But yesterday I was pain free because I didn’t have any pain in my feet and my kidney didn’t hurt.  Today, however, my feet were barking toward the end of the day but my kidney remained calm and pain free.

As I sit here whining about my pain, I’m reminded that there are a lot of people that are worse off than I am.  There are days that I hurt, a lot.  But, like yesterday, I didn’t have any pain whatsoever.   Some people can’t say that.  They have to live with chronic on a day to day basis.  There is no pain medication that can give them any relief whatsoever.  Knowing this makes me feel like a heel complaining of my insignificant pain when on most cases I can take a pain pill and for the most part feel better within thirty minutes or so.  There are those that medications can’t do anything for them.  I can’t image that.

I’ll say a prayer for all those in need of pain relief and I’ll include myself in this prayer.

“Life Goes On!”