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

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Tag Archives: Diagnosis

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 “Stable” Is a Standing Ovation

30 Friday Jan 2026

Posted by Tim Hughes Living with CML in Cancer, Diabetic, diet, Leukemia, Life, Uncategorized, Weight Loss

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Tags

Diagnosis, Dialysis, Doctor, eGFR, energy, Flood, health, Hemoglobin, Hospital, infusion, Iron, Kidney, kidney disease, kidney failure, Kidneys, Life, Medical, Nepgrologist, Oncologist, wellness

My nephrologist called me the other day to reschedule my appointment. Apparently, the hospital had a flood on the top floor, and their offices were flooded as well. Because when you’re already dealing with kidney issues, why not throw in some surprise indoor rain?

As a result, they had to temporarily move their offices to one of their satellite locations in a nearby city. The day before my appointment, they called again and asked if we could just do a teleconference instead. Same time, same doctor, no driving, and no pants required from the waist down—absolutely.

My lab work had already been done a couple of weeks earlier, and because I like to mentally prepare myself for either good news or emotional damage, I had my results emailed directly to me. Now, I’m not a doctor, and I don’t pretend to understand every number on those reports, but there are a few that I follow very closely.

First up is eGFR, or estimated Glomerular Filtration Rate. This number tells you how well your kidneys are filtering your blood. A normal range is between 90 and 120—numbers I personally haven’t seen in a while and would probably frame if they ever showed up again.

  • 60–89 is Stage 2 kidney disease
  • 45–59 is Stage 3a
  • 30–44 is Stage 3b
  • 15–29 is Stage 4
  • Below 15 means kidney failure, and dialysis becomes a very real conversation

Then there’s Creatinine, a waste product filtered by the kidneys. In simple terms, the higher the number, the worse things are working. Think of it as your kidneys’ performance review—lower is better.

The last big number I keep an eye on is hemoglobin, the protein responsible for carrying oxygen throughout your body. This one has a direct impact on how much energy I have, which explains why some days I feel like I could conquer the world, and other days I need a nap after tying my shoes. Normal range is 13.2-17.1

So here are the numbers I focus on:

  • eGFR: 35
  • Creatinine: 2.09
  • Hemoglobin: 10.5

Now yes, an eGFR of 35 doesn’t exactly scream “picture of perfect health,” but context is everything. Last year, that number was 14. At that point, my doctor was already talking about my next visit being with a dialysis specialist. That’s not a meeting you look forward to.

So going from 14 to 35? I’ll call that a solid upgrade.

My creatinine also improved significantly—from 4.29 last year down to just over 2. Another small victory, but I’ll gladly stack those wins wherever I can get them.

Hemoglobin, however, continues to do whatever it wants. It fluctuates so much that I regularly need iron infusions. My oncologist thinks it’s related to my kidney function, while my nephrologist believes it’s tied to the chemo drug I’m on. At this point, I feel like the two of them should arm wrestle, and whoever wins gets to be right.

When the call wrapped up, my nephrologist said she was happy with where things are. She even used the word “stable.”

And if you’ve never dealt with chronic illness, “stable” might sound underwhelming. But when you live in this world, stable is a beautiful word.

Stable means no dialysis—for now.
Stable means nothing is getting worse.
Stable means today is better than last year.

So yeah, I’ll take stable.
No complaints.
And preferably without any more floods—indoor or otherwise.

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