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Tag Archives: CML

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.

Please Hold…My Brain is Loading

11 Sunday Jan 2026

Posted by Tim Hughes Living with CML in bariatric-surgery, Cancer, Family, Leukemia, Weight Loss

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B12, blog, Brain Fog, Buffering, Chemotherapy, CML, Concentrating, Diary, Drugs, Forgetfulness, gastric bypass, health, Leukemia, Life, Medications, Memory, Memory Loss, Mental, mental-health, Sleep, Sticky Notes, Venting, writing

When I started this blog some years ago, it was mainly meant to be a diary of sorts — a place to vent and to voice my opinions. Gaining an audience was never part of the plan. This was more “Dear Diary” than “Dear Internet.” It wasn’t until I was diagnosed with CML that I decided to use this platform to write about my experiences with cancer and maybe, just maybe, help some other poor soul going through the same thing.

As with most things in life, plans change. Sometimes gently. Sometimes with a two-by-four.

Not only was I dealing with CML, but I also decided to write about my experiences with gastric bypass surgery. When I was doing my research, I noticed there really wasn’t much content out there. And what I did find often ended shortly after surgery, for whatever reason — almost like everyone vanished once the anesthesia wore off and nobody ever came back to update the internet.

There’s something else that’s been going on for quite some time, and I’ve finally decided to put it down on paper. I’ve been experiencing brain fog for several years, and over time, it has gotten worse. “Brain fog” is a term used to describe symptoms such as difficulty concentrating, memory problems, mental cloudiness, confusion, and trouble finding words — essentially, feeling like your brain is running Windows 95 in a world that expects fiber internet.

I notice it most when I’m trying to carry on a conversation and, right in the middle of it, my mind just… leaves. Names vanish. Phone numbers disappear. Sometimes I forget what I was saying while I’m still saying it. Short-term or long-term, it doesn’t matter. It’s there… then it’s not, kind of like my car keys.

What makes this so difficult isn’t just the symptoms themselves, but how they sneak into everyday life. I’ll walk into a room and forget why I’m there. I’ll open my phone to look something up and immediately forget what I was looking for. I’ll stand in the kitchen staring into the fridge like it’s going to explain my life choices to me.

Conversations that should be easy sometimes turn into mental obstacle courses as I search for words I’ve used my entire life. It affects my confidence more than I care to admit. When you can’t trust your own memory, you start second-guessing yourself. You hesitate before speaking. You rely more on notes, reminders, and the people around you. I’m grateful for their patience, but it’s a strange feeling when your own brain doesn’t always show up prepared.

Some days are better than others. There are moments when everything feels clear and normal, and I start to think maybe I’ve turned a corner. Then there are days when my thoughts feel like they’re moving through mud, and even simple tasks take extra effort. Those are the days that wear on you — not with fireworks, but with a steady drip of “Seriously? Again?”

If you Google the term “brain fog,” you’ll find a long list of possible causes: lack of sleep, medications, chemotherapy, B12 deficiency, and even anemia. I’ve spoken to my doctor about it, and while some over-the-counter options might help, with my anemia and the chemotherapy drugs I’m on, they may not make much difference. In other words, this may just be part of my user agreement for now.

I don’t share any of this for sympathy. I share it because this blog has always been about honesty — the good, the bad, and the occasionally forget-why-I-walked-in-here. Brain fog may be part of my story right now, but it’s not the whole story. I still laugh, I still enjoy life, and I still manage to function… even if I need a few more sticky notes than the average person.

I’ve learned to adapt. I write more things down. I set reminders. I give myself a little more grace than I used to. And when I lose my train of thought mid-sentence, I’ve decided it’s perfectly acceptable to blame the fog, shrug, and move on. If nothing else, it gives the people around me a chuckle — and honestly, some days I’m laughing right along with them.

And if you ever see me standing in a room staring off into space like I’m waiting on divine revelation, don’t worry. I’m probably just buffering.

Time Doesn’t Stand Still

22 Wednesday Oct 2025

Posted by Tim Hughes Living with CML in Cancer, Depression, Family, Leukemia

≈ 1 Comment

Tags

Cancer, Classmates, CML, Dating, Depression, Family, Grandkids, Great Grandkids, Kids, Lab Results, Leukemia, Life, love, Medications, mental-health, Old Age, Parents, Worrying, writing

The older I get, the more I realize that time doesn’t stand still. It seems like almost every week I hear about someone I used to go to school with or work with who has passed away. Just the thought of it can be depressing.

This past Saturday, I did a craft fair and happened to run into one of my high school classmates and her sister. We had a chance to catch up for a bit, and somehow the conversation turned to the classmates we’ve already lost. Sadly, cancer seems to have claimed most of them.

I’m 62 now — older than many of my classmates since I was held back a year — and although my health hasn’t always been the best, I count myself lucky to still be here.

Most of my classmates already have great-grandkids. Me? None of my three kids are married yet, so I’m not even a grandparent. Only one of the three is dating anyone right now, and I’m not sure when or if the other two will. That’s okay, though. I don’t ever want them to feel pressured. Still, before I go, I’d love to see all my kids married and maybe even get the chance to hold a grandbaby or two.

My parents, who are both in their mid to upper eighties, would love to see great-grandkids too. I have to remind my mom not to put pressure on my kids — she has a way of speaking her mind about things like that.

As I’ve mentioned before, I have a form of leukemia called CML. Right now, it’s under control. Sometimes one of the markers the doctors watch goes a little wild and sends everyone into a panic, but eventually, the numbers settle back down, and all is well again. I’ve come to accept that nothing I do can change the fact that I have CML. All I can do is take my daily pill, stay consistent, and be thankful that the medicine is working. Worrying won’t change the outcome.

Are you the worrying type? What’s the main thing that weighs on your mind — your kids, your health, your future, or something else? I get my worrying honestly; my grandmother on my mom’s side was a worrier, and my mom’s the same way. I guess it just runs in the family.

Life Updates: Weight Loss, Clyde, and Cold Mornings on the River

19 Sunday Oct 2025

Posted by Tim Hughes Living with CML in bariatric-surgery, Cancer, Diabetic, diet, Fishing, Kayaking, Leukemia, Nature, Pets, Weight Loss

≈ 2 Comments

Tags

Anemic, Bariatric Surgery, Bass, Cancer, CML, Cold, Fishing, health, Hobbies, Kayacking, Leukemia, Life, Pets, Temperature, Tumor, Vlogs, Weighloss, writing

I know—it’s been a minute since I’ve posted anything. Honestly, I don’t even remember what I wrote about last time, so forgive me if I repeat myself a bit.

My weight loss journey has finally leveled out—or at least I think it has. My original goal was 190 pounds, but I’ve actually surpassed that by almost 20. I weighed in this morning at 174 pounds and have been hovering there for several weeks now. That’s over a hundred pounds lost in total, which is still hard for me to wrap my head around sometimes. I’m pretty happy with where I’m at.

I don’t regret having the surgery one bit—if anything, I just wish I’d been able to do it sooner. That said, there are a few side effects I could do without. I get these hunger pains unlike anything I’ve ever felt before—sharp, deep aches around my stomach area that only fade after I eat. And since they removed my inflamed gallbladder during surgery, well, let’s just say I have to stay close to a restroom after meals. What goes in tends to come out quickly, and sometimes with little to no warning. Sometimes it’s 30 minutes, sometimes hours later—but when the tummy starts to rumble, it’s a do-or-die situation. I’ll let your imagination fill in the rest.

On a more personal note, my old buddy Clyde is still hanging in there. He’ll be 21 in January if he makes it that long. About a month ago, we found out he has a tumor on his liver. We don’t know if it’s cancerous, but because of his age, surgery isn’t an option. All we can do now is keep him comfortable and make sure his final days are filled with love. The vet couldn’t give us a timeframe, so we’re just taking things day by day. It’s tough to think about, and we’re trying to prepare ourselves mentally—but that’s easier said than done.

I’m still getting out on the river for some kayak fishing about once a week. I love it, but those 4 a.m. wake-up calls are brutal. I usually try to be on the water by sunrise to make the most of the day, and I’m typically done around 2 p.m. That’s a long stretch to be sitting in a kayak, but it’s peaceful out there.

As the temperatures drop, though, I’m not sure how much longer I’ll be able to keep it up. I’m chronically anemic and stay cold most of the time. Anything below 76 degrees is jacket weather for me. In fact, my thermostat is set at 76, and I still wear a jacket indoors most days. I have a trip planned for this Thursday, but the forecast says 43 degrees in the morning. I can bundle up, but once it warms up, I’ll have to stash my jacket somewhere—and space is limited in a kayak. The front compartment is out of reach when I’m seated, so it’s always a bit of a puzzle.

But hey, that’s life. I’ll enjoy it while I can—cold mornings, creaky joints, and all.

I’m also going to try to stay more active on here, share a bit more often, and hopefully regain some of my old followers—and maybe even find a few new ones along the way.

Feel free to ask me anything about my gastric bypass journey, my buddy Clyde, or my fishing trips. I’d love to share what I’ve learned and experienced. And if you’ve gone through weight loss surgery, have a special pet, or just want to chat about your own hobbies, I’d really enjoy hearing about them too.

Time for a Poll

01 Thursday Sep 2022

Posted by Tim Hughes Living with CML in Photography

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Tags

Cancer, CML, poll, Weight, Weightloss

Tomorrow is weigh-in. I’d like to see if anyone out there is willing to voice their opinion as to how much I’ve gained or lost.

Come on guys let’s play along. Did I gain weight? If so, how much? Did I lose weight? If so, how much did I lose?

I’m looking forward to seeing what you guys have to say. Remember, I lost over fifteen pounds last week. Did I lose that much again? What do you think??

Alice Fitts. One of the girls that I photographed earlier this week.

Welcome!!

04 Saturday Jun 2022

Posted by Tim Hughes Living with CML in Cancer

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Boring, CML, flooring, followers., health

It’s been a while since I’ve posted anything and I have probably lost several followers because of it. As I’ve stated several times throughout my time here, I really don’t post to gain followers. I post because this is a way that I can keep myself honest.

If you want to know about me just ask. I’ve posted enough about my health that I think most people turn me off the minute they see that I’ve posted something. I do feel encouraged that people do like a post though. Although they are few, I do like the comments that get posted on here. So far none have been out of line and I appreciate it.

I lead a pretty boring life so there’s nothing much to post about unless it’s my health. Having CML does make it a little challenging. Something is causing my breathing issues but we are not sure yet.

Stat tuned, I’ll have a story to tell about our flooring project that’s going on now.

Hello!

02 Thursday Jun 2022

Posted by Tim Hughes Living with CML in Cancer

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Tags

Blood Cancer, CML, Retirement

It’s been too long. I had no idea just how long it’s been. I’m still alive, obviously. I’ve got a lot going on so I’ll post more about some of the things later this evening.

Ta ta for now

Living With CML To Be Or Not To Be

03 Thursday Oct 2019

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

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Tags

Bone Marrow Transplant, Cancer, Chronic Myeloid Leukemia, CML, Disability, Oncologist, Tests

_3TH9526

As a child I used to love to ride roller-coasters.  I would ride for hours just to ride different coasters.  As I got older I out grew my fascination with coasters because my stomach couldn’t handle going upside down and being bounced around as much.  I guess riding a coaster is the best way to describe living with CML. It is for me at least.

The last few months have been just that, a roller coaster.  Since I was diagnosed in February of 2014, I’ve been on three different medications.  I had to change  because either the medicine quit working or it caused fluid around my heart and lungs.  In January of 2016 I had both type A and type B flu as well as pneumonia along with fluid around both of my lungs.  I was admitted into the hospital where they did all sorts of tests.  They eventually removed just over two liters of fluid around my right lung.  There was at least that much or more in my left lung but they would not remove it due to risk of infection.  It was during this time they took me off the medicine that they thought was creating the fluid.

In March of 2016 I was placed on a different drug and up until August of this year, I haven’t had any side effects of the drug.  But, unfortunately due to becoming severely anemic, and after having several tests done, they found that I had a bleeding ulcer.  Oh, but it gets worse.  The medicine for the ulcer reduces the effectiveness of the CML drug.  We were told that it didn’t but it did.  During the first several months after taking the ulcer meds, my CML numbers started increasing.  After several months of this my oncologist decided that he had done all he could for me and that he was referring me to a bone marrow transplant team.  These were to be the darkest days of my life.

About the same time I was diagnosed, another young lady in my community was diagnosed with CML. She didn’t like the side effects the drug was causing so she stopped taking the drug.  Her CML escalated and she had to have a bone marrow transplant.  I followed her on Facebook through her whole ordeal.  She was in the hospital for six long weeks having this procedure. I remembered her ordeal when I was told that I would be having the same thing.

The doctor that I was sent to was not on the transplant team.  The hospital he is associated with is one of the best cancer research centers in the US but the doctor had a lot of growing up to do.  He was fresh out of college. In fact, I have a son that is not much older that he is.  My other oncologist has over thirty years of experience but like I said, this doctor is fresh out of college and from another country to boot.  Nothing wrong with that though.  What this doctor had in knowledge, he lacked in experience.  I saw this doctor about 4 times and it was enough to know that there wasn’t going to be a 5th.  He did have a couple of suggestions that I did get out of our visits.  He stated that I was not a good candidate for a bone marrow transplant and that I was probably taking way too much medicine.  He also mentioned that I was supposed to be taking my cancer meds with food, which at that time I wasn’t.

So, as of today, I’m back with my previous oncologist, my numbers are back where they need to be and most everything is where it needs to be.  I am working on getting disability. I have a hearing in January.  I’ve had to get a handicap place-card because of gout in my right foot.

So, as you see, my life has been somewhat of a roller coaster. It’s been up, then down then on the up side again.  I’ve been reading books and trying to listen to some easy jazz music just to help me relax a bit.

Sorry for the long post.

 

 

 

Living with CML

17 Wednesday Jul 2019

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

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Tags

BMT, Cancer, CML, Hospital, Leukemia, Worry

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Let me introduce you to a friend of mine.  Her name is Tiffany.  She is currently in her third year of remission.  The above picture is the day she was admitted into the hospital for a month long round of treatment for CML.

Her story is a little different than mine.  She claimed that she had trouble taking her meds. She had terrible reactions when she took her meds and therefore quit taking them. Her CML advanced into something else and her doctors had to take more radical steps in treating her.  She was only treated for about a year with oral meds before she had her bmt.  Her Instagram account is full of pictures where she shows tubes running out of her nose and later being put in her chest.  These are pictures that I look at and put concern in my heart.

I’ve been put in the hospital before for different reasons but only for a short time.  I think the most I’ve ever stayed in a hospital is five days.  I can tell you that I like to have went out of my mind after staying in the hospital that long.  One thing that I know will be different, after about the third day, I felt pretty good.  Good enough to go home.  I doubt very seriously that after three or four days I’ll feel like going home.

There is still a lot that I don’t know about having a bmt.  I do know that before anything happens a donor will have to be found.  That could take a while even though I do have three siblings that could be a match.  I also found out that I could be having some kidney trouble.  This too could also slow things down I suppose.  I have an appointment with the kidney doctor next week.

I’m a person of worry.  I worry about everything.  The main worry I have right now is that once treatment starts I won’t be able to leave the hospital.  That means that all my family better stay safe.  I can’t be leaving the hospital to go to no funerals.  Things that get broken will have to stay broken until such time as I feel like repairing them or I can get someone there to repair it.  I may get someone that I used to work with to check on my wife from time to time to make sure nothing needs repaired.

Life is an Adventure Part 1

17 Wednesday Jul 2019

Posted by Tim Hughes Living with CML in Cancer, Leukemia

≈ 1 Comment

Tags

Blogging, Cancer, CML, Hairloss, Hospital, Leukemia, Tests

Life is certainty an adventure.  One that rarely disappoints.  That is, if you life long enough to live through it.  If you’ve been following my blog for any length of time, you should know by now that I am cursed with the dreaded “C” word, Cancer.  I have what is known as CML.  Chronic Myeloid Leukemia.  I was diagnosed with CML back in February, 2014, Valentines day to be exact.  Since my diagnosis, I have been on three different types of oral medications, the preferred form of chemotherapy for this type of Leukemia.  Each one with it’s own faults.  With each medication, it would start off working but for some reason the med would stop working and I’d be left with months of trying different dosages trying to find a happy medium.  When this last drug bit the dust, my oncologist gave me the dreaded news that he would be deferring me to another oncologist, one who specializing in bone marrow transplants.  At this writing, I have an appointment this Friday with an oncologist at another hospital.  However, this doctor is not part of the transplant team.  So, I’m somewhat concerned as to why I’m seeing him.

This is the end of Part 1.  Part 2 will come after the meeting with this new oncologist.  If things go according to the way I think, I will be going through the transplant soon.  I’m not sure when but I know it will be soon.  Donors will have to be found,  tests will have to be run and so forth.  I will keep this blog going as long as I feel like blogging.  Pray for me during this time._2TH1271_tonemapped

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