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

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Tag Archives: Medical

Life is an Adventure Part 2

19 Friday Jul 2019

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

≈ 2 Comments

Tags

BMT, Bone Marrow Transplant, Cancer, Leukemia, Medical, Stem Cell Replacement

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Today was my appointment with my new oncologist.  The doctor looked like he was fresh out of med school.  He looked like he was about my son’s age, about 26 or so.  He is from Saudi Arabia or somewhere close by with a heavy accent. I had no trouble understanding him so he must have learned English at a young age.

He arrived to my appointment about an hour and a half late.  I was not impressed by this.  However, he did have a good excuse.  He said that his excuse was in two parts.  One, he had to do rounds for his partner who was on vacation this week and he had to receive a teleconference with a group in Korea that involved a case study he was involved with.

I went in this appointment thinking I was to have a bone marrow transplant aka stem cell replacement. So I was a bit surprised when he said that I would stay in my current med for a while.  He also stated that because of my current health condition, with my diabetes and cardiac issues,  I was not a good candidate for stem cell replacement. The option would still be there but not right now.  We will continue to “work” with the current meds and see if we can get them to work again.

The numbers, although higher than normal. were not really that high, according to my new oncologist.  He has seen higher and with that said, has gotten the numbers back down to a manageable rate with little to no problem.

I have little choice but to trust him.  We will see what he has to say and we’ll do what he asks. I go back in one month for more lab work and for another visit.

Retirement Is Close At Hand

07 Saturday Jul 2018

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

≈ Leave a comment

Tags

Cleaning, Cold, Fireworks, Lightning, Medical, Medicine, Photo, Photography, Retirment, Sinus, Yard Work

I’ve been absent of late and for a good reason.  Although the doctor stated during my last oncologist appointment that my medicine is not working, I’m still feeling pretty good so I’m taking advantage of it and getting some things done around the house.  With that being said, I had to increase the dosage by 100mg and it’s starting to take a toll on my breathing.  Not much mind you but just enough to where I know that eventually, I’ll have to have more fluid drained from around my lungs.

I’ve got 39 more days to work and boy am I ready.  It can’t come fast enough. I’m supposed to meet with HR on Tuesday to discuss my retirement and post-retirement insurance.  More about this later.

The last four years have really played havoc around my house.  I’ve been fortunate to have a wife who is willing to cut the grass around the house but the other duties have gone by the wayside. My deck on the back side of the house needed cleaning four years ago and now it’s, well, pathetic.  The deck was black with mold and some of the hand railings needed to be replaced.  For the last three weeks, I have spent the afternoons and weekends cleaning this deck.  I have finished with the inside now to do the outside and then paint or stain next.

I have found the time to do a little bit of photography in the last few months.  I’ve really taken a liking to lightning pictures.  I’ve spent hours waiting on a storm to come through just close enough away that it would make a good picture while staying far enough away that I won’t be a target for a lightning strike.  I’ve had a few storms to come through.

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There was a Fourth of July celebration up the street and I was fortunate enough to take some pictures of some fireworks from my front yard.  I didn’t get all I wanted because at the same time I was trying to get my drone off the ground to video the event.  My phone kept locking up so I had to settle with just the pictures.

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I am currently sick with a sinus infection.  I went to the doctor today.  The drainage is making me cough and my chest is hurting.  I had plans on washing my truck and cleaning the outside today but that didn’t happen.  Maybe I’ll feel like doing it tomorrow.

Until next time.

Today’s Thoughts 4/7/2018

07 Saturday Apr 2018

Posted by Tim Hughes Living with CML in Cancer, Leukemia

≈ 1 Comment

Tags

Bosulif, Medical, Medicine, Observations, Oncologist, Side Effects, Test

I took my first dosage of Bosulif on Tuesday, April 3rd, and so far I’m not experiencing any fortuitous side effects that I’m aware of.  I have called my oncologist to let him know that I have started taking the drug but he has not told me when to come back in for any followup tests.  I would imagine that he would want to see me in two to three weeks, at least time to see if the drug is working.

For those that may be interested, I’m going to post the side effects of this med later on in this post but first I’m going to recommend someone else’s blog.  BeautyBeyondBones is the blog that you need to go take a look at. She is recovering from Anorexia.  Her blog is about her recovery and she has several books about cooking and she has published a book about her journey from Anorexia to Recovery.  You should go and check her out.

Side effects of the drug Bosulif.

Important Safety Information and Indication

Do not take BOSULIF® (bosutinib) if you are allergic to bosutinib or any of the ingredients in BOSULIF.

BOSULIF may cause serious side effects, including:

  • Stomach problems. BOSULIF may cause stomach (abdomen) pain, nausea, diarrhea, or vomiting. Tell your doctor about any stomach problems
  • Low blood cell counts. BOSULIF may cause low platelet counts (thrombocytopenia), low red blood cell counts (anemia) and low white blood cell counts (neutropenia). Your doctor should do blood tests to check your blood cell counts regularly during your treatment with BOSULIF. Call your doctor right away if you have unexpected bleeding or bruising, blood in your urine or stools, fever, or any signs of an infection
  • Liver problems. BOSULIF may cause liver problems. Your doctor should do blood tests to check your liver function regularly during your treatment with BOSULIF. Call your doctor right away if your skin or the white part of your eyes turns yellow (jaundice) or you have dark “tea color” urine
  • Your body may hold too much fluid (fluid retention). Fluid may build up in the lining of your lungs, the sac around your heart, or your stomach cavity. Call your doctor right away if you get any of the following symptoms during your treatment with BOSULIF:
    • – shortness of breath and cough
    • – chest pain
    • – swelling in your hands, ankles, or feet
    • – swelling all over your body
    • – weight gain
  • Kidney problems. BOSULIF may cause kidney problems. Your doctor should do tests to check your kidney function when you start treatment with BOSULIF and during your treatment. Call your doctor right away if you get any of the following symptoms during your treatment with BOSULIF:
    • – you urinate more or less often than normal
    • – you make a much larger or smaller amount of urine than normal
  • The most common side effects of BOSULIF include: diarrhea, nausea, low blood cell counts, rash, vomiting, stomach pain, respiratory tract infection, fever, abnormal liver function, tiredness or weakness, cough, and headache

Tell your doctor right away if you get respiratory tract infections, loss of appetite, headache, dizziness, back pain, joint pain, or itching while taking BOSULIF. These may be symptoms of a severe allergic reaction.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of BOSULIF. For more information, ask your doctor or pharmacist.

Tell your doctor about the medicines you take, including prescription medicines, non-prescription medicines, vitamins, and herbal supplements. BOSULIF and certain other medicines can affect each other.

Before you take BOSULIF, tell your doctor if you:

  • have liver problems
  • have heart problems
  • have kidney problems
  • have any other medical conditions
  • are pregnant or plan to become pregnant. BOSULIF can harm your unborn baby. You should not become pregnant while taking BOSULIF. Tell your doctor right away if you become pregnant while taking BOSULIF
  • are a woman who may become pregnant. Use effective contraception (birth control) during and for at least 30 days after completing treatmentwith BOSULIF. Talk to your doctor about forms of birth control
  • are breastfeeding or plan to breastfeed. It is not known if BOSULIF passes into your breast milk or if it can harm your baby. You and your doctor should decide if you will take BOSULIF or breastfeed. You should not do both

Indication

BOSULIF is a prescription medicine used to treat adults who have a type of leukemia called Philadelphia chromosome–positive chronic myelogenous leukemia (Ph+ CML) who no longer benefit from or did not tolerate other treatment.

 

Please see Patient Information and full Prescribing Information.

Update 3/4/2018

04 Sunday Mar 2018

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

≈ Leave a comment

Tags

CML, Drone, Fluid Retintion, Medical, Medications, Phantom 3 Advanced, Retirement, Video

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 Tim Hughes Living with CML in Cancer, Cycling, Leukemia, Weight Loss

≈ 2 Comments

Tags

Cold, Cycling, health, Medical, Rain, Riding, Sports, Weather

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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

Back in the Saddle Again!

23 Sunday Apr 2017

Posted by Tim Hughes Living with CML in Cancer, Cycling, Leukemia, Weight Loss

≈ 2 Comments

Tags

Cycling, health, Medical, Sports

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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.

 

Trying to Stay Up!

01 Saturday Oct 2016

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

≈ 1 Comment

Tags

Breathing, Cardiologist, CML, Depression, Doctor's, Drone, Employer, Lung, Medical, Photography, Stess

 

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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.

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