Category Archives: Leukemia

Long Overdue

10 Thursday Jan 2019

Posted by in Cancer, Family, Leukemia, Pets, Photography, Retirement

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It’s been since September since I’ve posted anything so I figured I’d do a little update on what’s been going on. First of all, I went to the dentist today and had some work done and I had to take a prescription pain pill to take care of the pain that I was in.  So, if this doesn’t make sense, that’s why. As stated in my last post, I’ve retired.  I can’t begin to tell you how happy I am about that. I get updates from one of my co-workers every once in a while and let me tell you when I get off the phone with him, it makes me so happy to think that I no longer work at that place.  The management at that place has taken a turn for the worse and it seems that I left just at the right time.  The stress that I felt while I was there is no more.  That within itself is worth retiring over.

So, what is my plan since retiring?  I’ve got several irons in the fire, none of which requires getting up and going to a regular job.  I was blessed with an excellent pension and my 401k didn’t look bad at all either.  I made an appointment before retiring with a financial planner and he told me that I had nothing to worry about.  In fact, I got a little raise since retiring so I think we’re going to do just fine.

On most occasions, I get up with my wife when she gets up to get ready to go to work.  I usually sit and talk with her while she’s eating breakfast.  After she leaves, I usually take a shower and go to the garage and work on some woodworking projects.  I take care of the laundry and try to have dinner cooking when my wife gets home from work.

Other things such as setting up my camera so that it can take pictures of the bird feeder have been another little project that I’ve been working on.  It’s the simple things in life that make it interesting.  My cats and I enjoy watching the birds in the morning while we’re sitting in the kitchen spending time with the wife while she’s eating breakfast.

On another note and this will be the last of this update for now.  My cancer numbers are starting to look pretty good but on the other side of that coin, my iron levels have started to plummet.  I’ve had to do two iron transfusions and had to have a colonoscopy and an endoscopy to find out where I’m bleeding out.  Ulcers, I’ve got two bleeding ulcers.  Another pill to add to my pharmacy list.

Thanks for taking the time to read and I’ll post again soon.

Health Report

27 Thursday Sep 2018

Posted by in Cancer, Leukemia, Photography

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For the past six months I have been on a new drug called Bosolif.  At first I was on 500 mg per day.  After a few months a test was performed and my numbers increased.  The medicine was not working.  Not only was it not working, I could tell that I had fluid around my lungs again.  Walking had started to become difficult.  With caution, my oncologist increased my meds by 100mg and he orered a CT scan to see how much fluid had accumulated.  After a week, the results of the scan had come back and, indeed, there was a small amount of fluid around my right lung but not my left.  According to my oncologist, if my meds were causing the fluid, it would accumulate on both sides at the same time and not just on one side.  I was diagnosed with broncitus a couple of weeks prior and he thinks that’s the reason for the fluid.  Since my increase in the meds, the last test results that came back showed that my numbers has fallen.  Nowhere close where they need to be but at least they are falling.

On a side note; I have finished my disability paperwork.  I submitted the online aplication a couple of days ago and sent in the hard copies today.  Hopefully I’ll hear something in a couple of months.

 

Tim

Retirement Is Close At Hand

07 Saturday Jul 2018

Posted by in Cancer, Leukemia, Nature, Photography

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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.

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.

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.

Stepping Out on Faith

22 Sunday Apr 2018

Posted by in Cancer, Cycling, Leukemia, Weight Loss

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I just signed up for the 29-mile Crimson Tide Ride in Tuscaloosa on July 28th.  I’ve ridden this ride several times but when this medication started messing with my lungs, I was no longer able to do so.  Right now, I feel like I can do it again.  It’s true that my longest ride so far this year has only been a little over eight miles, with the time left before the ride, I’m confident that I’ll be able to do the ride.  That is if my new meds don’t interfere.  If I continue to improve, I should be able to do the 36 mile next year.  I understand it has several more hills to overcome.

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Yesterday, our company participated in the Birmingham Corporate Challenge.  There were several events ranging from tug of war, corn hole, homerun derby, dodgeball, cycling and several other events. I participated in the 10k bike stroll.  It was a very simple route.  It was a three-mile loop that you had to do twice in which about a mile of it was a long hill.  This hill nearly whooped my butt the second time around.  Having forgotten my water bottle didn’t help matters any.  The event actually started with events on Thursday and ended about 6pm on Saturday.  Our company came in second overall last year.  It was sponsored by Chik fila and they gave out free chicken sandwiches.  I can’t wait to see where our company ended up in the standings this year.

Today’s Thoughts 4/19/2018

19 Thursday Apr 2018

Posted by in Cancer, Cycling, Leukemia, Weight Loss

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Got home late yesterday due to having to work later than normal.  I had my day all planned out before I got to work which included getting off early and trying to extend my mileage from 10 to at least 20 or more miles.  Didn’t happen.  I got to work and found out that I was going to have work the desk dispatching calls all day.  Which also meant I IMG_20180418_174749wasn’t going to be able to get any cycling in.  Not a total loss though.  I did stop at the track and got my 10,000 steps in for the day.

As much as I like getting out on my bike and ride, it’s important to me to get out and do something to enjoy the outdoors, even if it’s just walking on the walking track. Most of last year I just didn’t feel like getting out and doing anything.  Once I made it home from work, I didn’t have the energy to do anything but to shower and relax in front of the television.  I gained weight, my A1c went up and basically felt like crap. Now that I have my health back, for the time being, I’m taking advantage of it and getting out and doing something.  In the short time that I’ve been feeling better, I’ve been able to get out and ride, three times so far, I’ve gone to the track a few times and my A1c has come down a few points.  When I feel better I’m able to take better care of myself.

Stay Healthy!!

Today’s Thoughts 4/14/2018

14 Saturday Apr 2018

Posted by in Cancer, Leukemia

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Good afternoon everyone.

As I write this, we are experiencing a severe thunderstorm. This system has caused several tornado’s in the state of Mississippi but has weakened during its path over to our neck of the woods, in which I’m very thankful for. Looks like it may be a wet Saturday for us.

My cat, Clyde, hates thunderstorms and is sitting next to me on the floor looking for protection.  He’s not a lap cat and hates to be picked up and will not sit with you or me or anyone else as far as that goes.  But during storms, he seeks my protection and my protection only.  He just heard a loud clap of thunder and off he goes behind my bed.  He will not return until all is quiet again.  Funny,  cowardly cat.

Not much reaction to my video that I posted the other day.  I guess that might my last one. I don’t know, I may try one more to see how it goes.  I’ll give it some time though.

After I made the video, I went back to youtube and watched some video’s from the Leukemia Society.  They had posted several videos of patients with CML as they described their weeks up to being diagnosed.  They included bruising,  Feeling tired all the time, headaches and wanting to sleep all the time.  I never experienced any of that.  On one video, the guy was saying that when he was diagnosed back in 2014, his white blood count was over 260.  Mine was caught before it got that high.  At the time of diagnoses, mine had gotten as high as 138.  Maybe that’s the reason I didn’t experience any of the side effects; my numbers just wasn’t as high as his.  I also read that one lady, who also was diagnosed in 2014, got her numbers down and was taken off all of her meds.  She still get’s tested every six months but she no longer takes meds for her CML.  That’s encouraging.

I hope everyone has a chance to get out and enjoys the weekend.

Tim

 

 

Today’s Thoughts 4/10/2018

10 Tuesday Apr 2018

Posted by in Cycling, Leukemia, Weight Loss

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It’s been seven days since I started my new medication.  At this time there hasn’t been any noticeable side effects.  I’ve had the pharmacist from the drug company call me twice to check on me.  Like I said in my last post, this is a fairly new drug so they’re just concerned about me I guess.

On April 21st, there is a city-wide competition with some of the business in town called The Birmingham Challenge.  I have signed up with my employer to ride in a 10k bike stroll.  The bike stroll is not a competition within itself but we get points as to how many cyclists we get to ride in the event.  It’s the same way with the walking event.  We do, however, have other events that are competitions, such as the tug a war, dodgeball, corn-hole, golf, home-run hitting, and a couple more events.  Last year our company came in 2nd overall.  I’ve signed up for the cycling event.  I haven’t been on my bike for nearly a year, until this evening. I know it’s not much but I rode a whole 2.4 miles.  I could’ve ridden further but both my headlight and taillight were not charged and I didn’t want to ride without them.  I really surprised myself.  I actually dreaded getting back on my bike and tackling the hill in front of my house.  I got a little winded but I made it with no problems.

I’m back on my low carb diet.  I blew it this weekend.  Those Little Debbie cakes ought to be illegal.  I’ve finally got my wife on board with me with her cooking and she’s not giving me bread or potatoes so the failure this weekend is all on me.  I just “grazed” all weekend.  I had lost seven but on Monday, I gained five.  I hate losing the same weight that I had already lost before.  Today I did great though.  We’ll see when I check the scales in the morning.

I check in again in a couple of days.  In the meantime, enjoy your week.18157141_10154580034993946_3844449760811629204_n

From last years event.

 

Today’s Thoughts 4/7/2018

07 Saturday Apr 2018

Posted by in Cancer, Leukemia

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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.

Today’s Thoughts 3/25/2018

25 Sunday Mar 2018

Posted by in Family, Leukemia, Photography

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Hello everyone!!  I hope everyone had a great weekend and is looking forward to going back to work.  Me?  I had a great weekend but I am not looking forward to going back to work tomorrow.  I guess most of are not.

My wife is off all week next week for spring break.  I’d like to take off with her but I’m trying to save my time just in case I have to go back to the hospital.  If I have time I’ll take two weeks either in June or July to go on vacation with my family.  I could save my time and just get paid for it when I retire but my kids would be able to get out of school in August when I do retire.

This weekend was spent in my backyard doing some pruning.  I’ve let my backyard go for several years because simply I haven’t felt like doing any type of yard work.  So now I’m paying for it.  Shrubs have grown into trees so I’m back there with an electric chainsaw cutting everything down and dragging it to the street.  The chainsaw is only good for about two hours and as luck would have it, that’s about how long I can last without taking some sort of a break.  I got a lot done this weekend but I’ve still got a lot more to do.  Here’s an aerial view of my backyard.  Too bad I don’t have a before picture so you can see what I’ve done.

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There’s an area just to the right and behind the white truck that I’ve cleaned out and to the right and behind the large bush directly behind the deck. I’ve cut down the large bush after this picture was taken.  The brush people will not be happy with me when they come and pick up the pile.  It’s enormous.

I hope everyone has a great week ahead.  I’m only working four days.  I’m off Good Friday.  All my kids are coming home so I’m planning on doing something with them on Saturday.  Sunday we’re spending it with my wife’s parents.  Lovely. (Insert sarcasm here)

My meds never came this weekend.  I guess a call to my oncologist will be in order for tomorrow.

🙂