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Tag Archives: Medicine

The Phone Call That Changed Everything

17 Saturday Jan 2026

Posted by Tim Hughes Living with CML in Cancer, Depression, Diabetic, Disability, Leukemia, Life, Weather

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Anniversery, Cancer, Celebrate, Chemotherapy, CML, Depression, Doctor, health, Lab Work, Laughter, Leukemia, Life, Medicine, Oncologist, Weather

It’s hard to believe, but I’m coming up on my 12th anniversary of being diagnosed with CML (Chronic Myeloid Leukemia). My most recent lab work showed my cancer as undetected—which is always good news… with an asterisk. In my case, “undetected” can be a little sneaky. It can be undetected on one visit and pop back out of range on the next. I wish I could tell you why there’s such a swing, but I don’t do anything differently from month to month. Same diet. Same routine. Same bad jokes. The only thing that really changes is what the numbers decide to do.

I will never forget the day I found out. Or the days leading up to it.

I had gone in for a routine six-month checkup when my GP called and asked me to come back in for more lab work because something looked “off.” Then on February 14, 2014—Valentine’s Day—my wife and I were getting ready to meet one of my daughter’s newest boyfriends. He was coming to pick her up for a high school date, and I was in the important stage of fatherhood known as trying to find the right words to mildly terrify a teenage boy.

That’s when my phone rang.

Keep in mind, this was late on a Friday afternoon, when most doctors’ offices are already mentally in their cars. The nurse told me my white blood cell count was extremely high and that they wanted me to see an oncologist.

At that moment, I had never heard the word “oncologist.” I didn’t know what kind of doctor that was.

During the phone call, my wife quietly looked it up and said, “Tim… that’s a cancer doctor.”

Needless to say, my carefully rehearsed intimidation speech for my daughter’s boyfriend completely left the building.

My appointment was scheduled for the following Tuesday at 10 a.m., which made that weekend the longest weekend of my life. A thousand scenarios ran through my head. I didn’t sleep much. I just wanted Tuesday to get there so I could talk to someone who actually knew what was going on.

Tuesday morning arrived with snow and ice. I kept calling the office. No answer. The hospital sat on top of a steep hill, and the road was iced over. No one was going up it, including me.

Later that day, the temperatures rose, someone finally answered, and my appointment was moved to 2 p.m.

I’ll never forget meeting my oncologist. He made a lasting impression. My wife decided that day she didn’t like him from the start.

I had a thousand questions loaded and ready. I opened my mouth to ask the first one. He held up a finger and said, “I’m talking. When I’m done, I’ll answer your questions.”

And just like that, I realized I was not in charge anymore.

He’s an older doctor, and sometimes I worry that one day I’ll walk in and find out he’s retiring. I’ve been with him nearly the whole time—nearly because there was one stretch when he tried to pawn me off on another doctor at another hospital because my numbers wouldn’t behave. But that’s a story for another time.

The time after my diagnosis was one of the darkest periods of my life. I slipped into a depression I had never known before. I truly thought CML was a death sentence. I was afraid to buy anything because I figured it would just have to be sold or given away. There were days I stayed home—not because I was sick, but because I didn’t want anyone to see me fall apart.

And honestly… at that time, I didn’t care.

Through some very serious conversations with my wife, my parents, and my oncologist, I slowly crawled my way out of that hole. It didn’t happen quickly. It didn’t happen neatly. But it happened.

They say laughter is the best medicine, and while my insurance company may disagree, I’ve found it to be pretty true. If you go back and read some of my early posts, you’ll notice they don’t carry the same humor as the ones I write now. There’s a reason for that.

I still have days when the weight hits harder than others. I still have moments of fear, frustration, and fatigue. But I’ve learned that sometimes it’s better to laugh at life’s situations than to let them crush you. Humor didn’t remove cancer from my life—but it did give me a way to live with it.

So here I am, almost twelve years in. Still showing up. Still rolling the dice on lab work. Still grateful for “undetected,” even when it comes with an asterisk. Still learning. Still stumbling. Still here. And still trying to laugh whenever possible… because some days, laughter is the only thing in the room that reminds you you’re still alive.

If you’re reading this and you’re walking through cancer, or any other terminal or life-altering diagnosis, let me tell you something I had to learn the hard way: don’t give up. Don’t give up on tomorrow. Don’t give up on joy. Don’t give up on the people who love you. And don’t give up on yourself.

There will be dark days. There will be scary appointments. There will be lab results that knock the wind out of you. But there will also be days you never thought you’d see. Conversations you didn’t think you’d have. Laughs, you didn’t think you were capable of anymore. Life doesn’t end when a diagnosis begins. It just changes.

Hold on. Ask questions. Lean on the people God has put in your life. Celebrate the good days. Endure the hard ones. And if all you can do on some days is get out of bed and breathe, then that is more than enough for that day.

Almost twelve years ago, I thought my story was coming to an end.

It turns out that it was just the beginning of a very different chapter.

And as long as there’s breath in your lungs, there is still a reason to keep turning the pages.

Everyday is a Blessed Day!

11 Friday Jan 2019

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

≈ 2 Comments

Tags

Cancer, Drugs, Leukemia, Medication, Medicine

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It’s been nearly five years since my diagnoses of CML, a form of Leukemia.  If I had received the diagnosis back in the 1990’s I would have been told to go home and make my funeral arrangements.  With today’s modern medical advancements, which I’m highly thankful for, those of us with this diagnosis are able to live a somewhat normal life for many years.

There is a “go-to drug” called Glevic that is prescribed to most all new patients.  This drug worked for me for a while but stopped and I had to find something else.  The next drug caused more problems than the actual cancer did.  This new drug I’m on is working for now but is causing fluid around my heart and lungs but not as bad as the previous drug.

Is my life back to normal, no.  There have been many changes that had to be made to make my life a little better.  Because of the fluid around my heart and lungs, I’m no longer able to do a lot of the things I used to do.  Basically, I had to stop anything that would cause me to get out of breath with exertion.  That doesn’t mean I’ve given up.  I still try to walk and stay active. Every morning that I wake up I feel blessed to still be here. I’ve got a lot to live for and I hope I’m here for a while to come.

Retirement Is Close At Hand

07 Saturday Jul 2018

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

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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.

Me and CML

12 Thursday Apr 2018

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

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Cancer, CML, Medicine, Oncologist, Wordpress

Trying something a little different.  A little nervous about it.

Introducing ME!  Don’t know if I’ll do it again.

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.

Today’s Thoughts 323/2018

23 Friday Mar 2018

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

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carbs, Cats, Easter, Medicine, Oncologist, Weightloss

 

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Clyde waiting for me to come home.

 

Good news!!  I’m down three pounds this week.  I’m trying to keep my carb intake to about 35 but I’m not doing so well. Maybe I’ll do better next week.

My meds still have not arrived.  I guess I’ll call my oncologist on Monday if I don’t get it this weekend.

Tomorrow I plan on doing some cleaning up in my backyard.  After which I plan on flying my drone.  My son is coming home tomorrow sometime so I want to make sure I’m here when he get’s here.  Next weekend is Easter weekend and all my kids should be home.  I’m really looking forward to that.  I can’t believe they’ve grown up on me.  Two in college and one living on his own.  They sure do grow up fast.

Oncologist Update; 3/21/2018

21 Wednesday Mar 2018

Posted by Tim Hughes Living with CML in Cancer, Leukemia

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BCR ABL, Bosulif, Cancer, Fluid Retintion, Liver Problems, Medicine, Oncologist, Side Effects, Sprycel

My oncologist called this evening wanting to know if my new meds had come in.  They had not.  He told me that my BCR-Abl numbers had greatly improved which is very surprising being that I’ve been off my Sprycel for nearly two months.  Too bad my body can’t handle the medicine any longer.  Once my new meds get here, which should be within a few days, I’ll start taking it.  The side effects looks pretty bad, diarrhea, fluid retention in both the heart and lungs, low red blood counts, liver problems and multiple other issues.  Bosulif will be the third medication that I will be on.  There are only a couple more that is out there that is approved by the FDA.  I’m hoping this works with minimal side effects402d22500b1841198233ebb8058faf26-bosulif_200_312

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