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~ Diabetes, Cancer Fighter, Father of Twins, Kayak Fishing, Woodcrafter, Lover of Life

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Tag Archives: appointments

It’s Not the End of the Road

27 Monday Apr 2026

Posted by Tim Hughes Living with CML in Cancer, Depression, Family, Fishing, Kayaking, Leukemia, Life, Uncategorized

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adventure, Anger, appointments, Babies, Blogging, Cancer, CML, Depression, Diagnosis, Dreams, Emotions, Family, Help, Journey, Kids, Leukemia, Life, love, Medications, mental-health, Support, writing

Just a quick post.

I have Chronic Myeloid Leukemia (CML). I was diagnosed back in 2014. I’m not going to lie—when I first heard those words, I thought my world had come to an end.

I was devastated.
I got depressed.
I was angry at everything and everyone.

I couldn’t even carry on a simple conversation without it turning into something it didn’t need to be. In short, I wasn’t exactly easy to live with.

The truth is, everything I felt is something a lot of people experience when they hear the word “cancer.” That flood of emotions hits hard. But what I’ve learned since then is this—there is always hope, no matter the diagnosis.

I follow several CML groups online, and I try to help people who are just starting this journey and struggling to process it all.

Last night, I came across a post from a young woman who had just been diagnosed with CML. She was going through the same emotions I went through—fear, anger, and the overwhelming feeling that her life was over. She had just gotten married and was planning to start a family, but now she was ready to give up on that dream. Her husband, loving her the way he does, was willing to give that up, too.

That hit me.

So I reached out to her privately.

I told her what I wish someone had made crystal clear to me in the beginning: things have changed. Years ago, this diagnosis looked very different. Today, it’s not the same story.

There are medications now that can control this disease. It may not be something that just disappears, but it’s something many people live with—and live well with.

I also told her I understood exactly what she was feeling, because I had been there—the anger, the depression, the uncertainty. And I let her know she didn’t have to go through it alone.

And I told her about this blog—about my life after diagnosis, the ups and downs, the fishing trips, the everyday moments. I wanted her to see that there is still a life to live after hearing those words.

Honestly, I didn’t expect a response.

But she wrote back.

And after several messages, I could tell something had shifted. Knowing that someone else had been walking this road since 2014—and is still here—gave her a different perspective. It even made her reconsider the idea that her future, including having a family, might not be over after all.

That right there is why I share my story.

CML is not a death sentence. It’s a bump in the road. A big one sometimes—but not a roadblock.

My numbers still go up and down like a rollercoaster. Some months are good, some aren’t. But it’s been that way long enough that it doesn’t shake me like it used to.

Life goes on.

And that’s exactly what I told her—live your life. Keep your appointments. Take your medication. Listen to your doctor.

But don’t stop living.

Because this diagnosis doesn’t mean the end of your story.

When Life Schedules You Back-to-Back

12 Thursday Feb 2026

Posted by Tim Hughes Living with CML in Family, Fishing, Life, Photography, Uncategorized

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Tags

appointments, Bloodwork, Doctor, Family, Financce, health, investments, Life, Medicare, mental-health, Procrit, repairs, writing

Today was one of those days where it felt like my full-time job was simply showing up somewhere else every few hours. Three appointments, three different parts of life, all packed into one long day.

I left the house around 9 a.m. for my first appointment at 10. I pulled in around 9:30 — early, I know — but I’ve always believed it’s better to be thirty minutes early than five minutes late. Plus, if something crazy happens, I’ve got buffer time. If nothing crazy happens, I get bonus time to sit in a waiting room and read my Kindle.

To my surprise, I was the only one in the waiting room, which rarely happens. I half expected someone to jump out and yell, “Just kidding, we’re running two hours behind!”

Then came the usual routine: three sticks before they finally got enough blood for testing. At this point, I think my veins hide when they see a needle coming. I’m pretty sure if they could talk, they’d be yelling, “Scatter! It’s Tuesday again!”

This visit was to my oncologist’s office to check my hemoglobin. It’s been running low for quite a while now. Normally, I go in once a month for a Procrit shot to help my body produce red blood cells and fight the anemia. Normal hemoglobin runs between about 12 and 15. Mine has been in the 6.5 to 8 range for a couple of years now — basically the bargain-bin section of hemoglobin numbers.

We tried iron infusions at first. They worked… briefly. Then it was right back to square one. When Procrit was first suggested, Medicare wouldn’t cover it. That meant $400 per shot, once a month. For that price, I feel like it should come with a steak dinner and a T-shirt.

Thankfully, Medicare eventually changed course and started covering it.

The good news today? No shot needed. My hemoglobin came in at 11.1. Still low, but close enough that the doctor decided to hold off and test again next month. I’ll take that as a small win. Around here, we celebrate small wins. Sometimes with coffee. (Which, apparently, is now under review.)

Next stop was my primary care office. I ended up seeing the nurse practitioner because my doctor was in a bad car accident several months back and is currently in rehab. His daughter, who is also a nurse practitioner, has been helping cover patients. We’re not sure whether my doctor will return to his practice. It’s a wait-and-see game for now.

Unfortunately, she can’t prescribe the narcotic meds I’m on, so I’ll have to go back next week to see another doctor just to get those refilled. Nothing like making a special trip just to prove you’re still the same person who needed the meds last week.

They were also supposed to retest my potassium levels today. That didn’t happen.

Instead, I got the lecture about my coffee habit and how high potassium can damage kidneys. Considering I’m already fighting to keep my kidney numbers where they need to be, I guess it’s time to start thinking about weaning myself off coffee.

Let me be clear: this may be the greatest personal challenge I have faced to date.

I don’t want to say coffee, and I are in a committed relationship… but we’ve definitely been exclusive for a long time.

My last appointment was with my financial adviser. He manages my retirement funds, and we meet yearly to review where everything is invested and how things are performing. Thankfully, things look solid. What he’s doing is working, and that’s a huge relief. I like the idea of continuing to eat and keep the lights on.

We also talked about future plans — mainly selling this house and moving somewhere safer. This neighborhood just isn’t what it was 35 years ago. That’s a whole story for another day, probably involving the phrase “kids these days.”

The bigger issue right now is the house itself. There’s a long list of repairs waiting for attention.

The deck my dad and I built over 25 years ago is starting to splinter and show its age. It probably needs to be torn down and replaced completely. Part of me hates that. The other part of me hates splinters more.

There’s visible wear around the chimney. The painters we hired five years ago did a poor job — but we went cheap, and sometimes you really do get what you pay for. Apparently, we paid for “looks good from across the street.”

Both bathroom vanities need replacing. The stairs need the carpet removed and the laminate installed. The roof needs shingle work before it decides to become an indoor water feature.

My adviser’s advice was simple: get several estimates, choose the contractor we trust most, then call, and they’ll cut the check. Easy… at least on paper.

Now comes the fun part — finding contractors.
I know of one.
Which means I am now officially accepting applications from the universe.

I was actually supposed to go fishing tomorrow, but it looks like it will be late afternoon before temperatures get comfortable enough for me to be outside for any length of time. So I decided to postpone it until spring decides to show up regularly instead of just teasing us for a few hours at a time.

The fish are safe for now… but their luck runs out the minute spring clocks in full time.

Some days are about big life moments.
Some days are about survival.
And some days are just about showing up, getting poked with needles, getting lectured about coffee, and trying to keep life moving forward one appointment at a time.

Today was one of those days.

And honestly?
I’m grateful I was able to make them all.

Even if I may have to say goodbye to coffee soon.
Please keep me in your thoughts during this difficult time.

February Is Confused… and Honestly, So Am I

05 Thursday Feb 2026

Posted by Tim Hughes Living with CML in Fishing, Kayaking, Life, Retirement, Uncategorized, Weather

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Tags

appointments, Bass, Fishing, Forecast, kayak, LEW's, month, temperatures, Weather, wilderness systems, Winter, Zoom baits

pxl_20251008_202145012471151304126013745

As I’ve posted before, the weather here has been anything but normal for February. Looking at next week’s forecast, it’s supposed to be in the high 60s to low 70s. That is absolutely nuts. Somewhere, winter is filing a missing person report.

Today, I got a call from one of my fishing buddies asking if I wanted to go fishing while it’s warm. Now that is the kind of phone call that usually results in me immediately looking for my tackle box, my lucky fishing hat, and trying to remember which truck door pocket I left sunflower seeds in.

Unfortunately, real life showed up and reminded me I have three appointments next week. Three. In February. During fishing weather. That just feels disrespectful.

But… if I can shuffle things around just right, there is a very real possibility of my wetting a hook or two. At minimum, I can at least drive by the water and stare at it longingly like a kid looking through a toy store window.

Honestly, if February is going to act like April, I feel like it’s my civic duty to at least attempt to catch a fish. I don’t make the rules. I just follow the weather.

And if you see me calling in “temporarily unavailable,” just know I’m conducting important seasonal research… from my kayak.

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