Category Archives: Leukemia

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.

Memories of a Winter Day

06 Tuesday Mar 2018

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Taken just before Christmas on my way home from work.  So afraid of another “Snowmageddon” which left over 1,000 people stranded at work for three days, our company decided to let us go home early.  We don’t get much snow down here in the deep south but when we do it shuts down the entire city/state.

A dash cam captured my trip from work to the first traffic light.  I edited it and added music to try to make it more interesting.

Hope you enjoy.

Update 3/4/2018

04 Sunday Mar 2018

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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

A Little Slow

05 Friday May 2017

Posted by in Cancer, Cycling, Leukemia, Weight Loss

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The weather here in the deep south has been less than perfect for bike riding for me.  The last two days it’s been a rainy, dreary day.  Today the temperature hardly rose above the mid 50’s mark.  Tomorrow is forcasted to be warmer but not until mid afternoon.  My plan is to either get a twenty mile in on Saturday or wait until Sunday when I should have more time.

My last ride broke the 100 mile mark.  That’s pretty good considering that only six months ago I was considering selling my bike because of my health.  I’m looking forward to much healther days along with miles and miles of riding.

Happy Trails

Birmingham Corperate Challenge

29 Saturday Apr 2017

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I had an opportunity to ride in the 10k bicycle ride in the Brimingham Coporate Challenge. I’ve been able to get some riding done in preporation for this ride.  Just last week I was able to get over thirteen miles in so that really helped.  Our company came in 2nd in the bicyle strole and 2nd overall of all the companies that participated.

All is going pretty well I guess but I had a little scare the other day.  After my longest ride I noticed while taking a shower I was spitting blood.  I washed out my mouth several times and what came out was dark red.  I called one of my cardiologist the next morning and I spend the rest of the day tracking down all my other doctors as well.  I think that the final diagnosis was that I had some sinus issues and my heavy breathing causing my mouth to get dry aggravated it.

Back in the Saddle Again!

23 Sunday Apr 2017

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It’s been a while since I’ve posted anything but my absence hasn’t been anything bad.  My health has steady improved so much so that I’ve tried to start riding my bike again.  I was a bit concerned when I got started because I actually thought that something was still wrong with my breathing.  I talked with cardiologist about  this and he just informed me that I was out of shape.  After all, it’s been nearly two years since I’ve been on my bike.

When I first started back I was in for a huge disappointment.  I heard about a bike ride that is held on every Sunday.  It ranges from 8 to 10 miles.  Remember those 20 mile rides I used to do every day?  Lol.  Not any more.  After about three miles I knew I was in serious trouble.  So many hills and I couldn’t remember how to clip in my peddles.  In fact, before the ride even began I fell flat on my face trying to clip in.  We stopped so many times waiting on the slower people that I think that’s what actually wore me out trying to clip in to those damn peddles.  I realized then that I needed to ride around the house for a bit and get reacquainted with my bike.  Shorted ride 1.34 miles, Longest ride thus far 13.48 miles.  I’m averaging about 10 mph.

There is a ride in June called the Hot Hundred.  You got it, it’s a 100 mile ride with smaller rides available.  The shortest is a 29 mile ride that I used to ride in.  I have my hopes of riding it this year.  After my 13 mile ride I have my doubts.  I still may get to ride it, after all it’s in June.  It’s something that I’m working toward.  If I don’t this year, there’s always next.

 

Update 2/19/17

19 Sunday Feb 2017

Posted by in Cancer, Cycling, Depression, Family, Leukemia, Twins

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My health has steadily improved over the past several months with the exception of a sciatic nerve pain issue in my right hip.  I’ve been dealing with it since right before Christmas.  It has gotten better but I did end up getting a pain block this past Friday.  Not sure if it worked or not.

A couple of nights before Christmas, one of my daughters and I had a fallen  out.  Because of my health there were some changes made with my job.  One of which was a huge pay cut.  This daughter of mine loves to go out and shop when ever she’s home.  I’ve tried talking to her about my job status but it still didn’t matter.  I cut lose on her, which I now regret.  I left the house upset, jumped into my truck and didn’t make it far before I parked into a parking lot and lost it.  I guess it had been building up for a long time and I just couldn’t hold it in any longer.  I’m doing better now I guess.  I haven’t had an episode like that since but I do miss my girls tremendously when they’re away at school.

Got plans to start riding my bicycle next week.  Found a couple of small groups that don’t go too far and are easy rides.  I think I’ll do better riding with someone else verses riding by myself at least till my health really improves.

That’s it for now.

 

 

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.