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Tag Archives: Iron

The 80/20 Decision

19 Wednesday Aug 2026

Posted by Tim Hughes Living with CML in Cancer, Leukemia, Life, Uncategorized

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Asleep, Benadryl, Cancer, Cliff Notes, Doctor, Drug, health, infusion, Iron, Kendle, Leukemia, Life, Medication, mental-health, Oncologist, Reading, Side Effects, writing

I had an iron infusion today. Before I went to the treatment room, I was unexpectedly led to an exam room, where I waited for several minutes.

I was beginning to get a little concerned because I had another doctor’s appointment later in the afternoon, and I really didn’t want to be late. My normal infusions take approximately two hours, so I had a right to be concerned.

Eventually, my doctor stuck his head in the door and told me he needed to see me, but it would have to wait until after my infusion. He assured me that the information he had for me wasn’t bad.

Of course, there’s nothing quite like a doctor telling you, “It’s not bad,” and then walking away.

That statement may be reassuring to him, but my brain immediately responded with, “Well, if it’s not bad, why can’t you tell me now?”

My infusion itself went according to plan. They gave me Benadryl as a precautionary measure, and within a few minutes, I was sound asleep.

I always bring my Kindle with me so I can read while I’m getting my infusion.

I don’t know why.

I think I have brought that Kindle to every infusion I’ve had, and I’m pretty sure the most I’ve ever accomplished was getting past the title page.

At this point, the Kindle is basically just an expensive security blanket.

I should probably start bringing a pillow instead.

Once the infusion was finished, I finally got to meet with my oncologist.

Thankfully, the meeting wasn’t nearly as bad as I had imagined.

It was about that one marker that just can’t seem to behave itself. Apparently, there is a new drug available, and my doctor would like me to consider trying it. He gave me some literature to take home and asked me to let him know by next week whether I want to give it a try.

The biggest reason he wants me to consider it is the success rate. According to what he told me, about 80 percent of the people who take this drug can be free of the cancer within five years.

Eighty percent.

That’s pretty encouraging.

Then there’s the other 20 percent.

Those are the people who will have to remain on some type of medication for the rest of their lives.

And, knowing my luck, I’ll probably be sitting in the 20 percent section.

I can see it now.

“Congratulations! You have been selected for the premium medication package. Unfortunately, there is no prize.”

Of course, I’m joking…mostly.

There are also some potential side effects that I need to consider. Upon first inspection, there are concerns about pancreatitis, heart problems, and kidney problems.

Unfortunately, those aren’t exactly unfamiliar words to me. Most of these are things that I’m already dealing with or being constantly monitored for.

Apparently, my body likes to keep my doctors employed.

That’s probably one of the reasons I’m hesitant to make a quick decision.

My doctor gave me some literature to take home and read so I can make an informed decision.

I’ll probably need the “Cliff Notes” version to fully understand what I’m reading.

Medical literature has a way of taking something that could probably be explained in three sentences and turning it into twelve pages of words that require a medical degree, a dictionary, and possibly a translator.

I’m sure somewhere in those pages it will say something like, “This medication may cause some serious side effects.”

Then I’ll spend the next three hours wondering if a headache means I’m dying.

On the other hand, the possibility of eventually being free of the cancer is hard to ignore.

I’ve been dealing with this for years, so the thought of taking a different medication with the possibility of reaching that point is certainly appealing.

Now I have a week to read through the information, think about it, and probably drive myself crazy trying to decide what I should do.

I suppose that’s the downside of being given choices.

Sometimes it’s easier when someone else just tells you what to do.

For now, I’m going to read the literature, talk to my doctor if I have questions, and try not to let my imagination get the best of me.

After all, I’ve already spent two hours today worrying about news that turned out not to be bad.

I might as well give my brain a little time off before it starts worrying about the next thing.

And if anyone needs me, I’ll be over here reading my “Cliff Notes”…

assuming I can figure out what the Cliff Notes are saying.

One Positive Result

18 Tuesday Aug 2026

Posted by Tim Hughes Living with CML in Cancer, Leukemia, Life, Uncategorized

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:Labs, Birthday, Blood Work, Cancer, CML, Doctor, Email, health, infusion, Iron, Leukemia, Life, mental-health, Positive, Rerports, Scale, Tests, writing

I got an email yesterday from the place that did my recent oncology lab work.

I was at my mom and dad’s house celebrating my birthday when the email came in. Of course, I immediately noticed it and started debating whether or not I should open it.

Part of me thought, “If it’s good news, I’ll open it and share it with everyone.”

But if it was bad news?

Well, I probably wouldn’t want to open it while I was surrounded by family. I’d probably gather everyone together, tell them what was going on, and then go home.

That may sound a little dramatic, but when you’ve been dealing with cancer for more than a decade, you learn that opening a lab report can feel a lot like opening a Christmas present from someone who doesn’t particularly like you.

You just don’t know what’s inside.

After a little discussion with my wife, I decided to bite the bullet and open the email.

For months, my test results have come back negative.

I’ve learned not to get too excited when I see those negative results, though. As much as I would love to believe that things are going to stay that way forever, I know better.

Eventually, something is going to change.

And change it did.

Of the three markers they check, one of them came back positive for BCR-ABL1.

Now, before anybody starts panicking, it’s not the end of the world.

It’s something we’ve seen before, and hopefully, when I have my labs checked again in a few months, that number will come back down.

My oncologist called me today to go over the results. He explained that I need another iron infusion, which isn’t exactly surprising considering my iron levels have been giving me fits lately.

As for the elevated BCR-ABL1 marker, we’re not going to change anything right now.

We’ll wait and see what happens.

If it continues to stay high, then we may have to look at changing medications. But for now, it’s a matter of keeping an eye on it and letting the medication continue doing what it’s supposed to do.

And honestly, this isn’t the first time we’ve been here.

We’ve seen this movie before.

I just wish they would quit making sequels.

For now, I’m going to continue taking my medication, get the iron infusion, have my labs checked again in a few months, and hopefully get another email that says everything is back where it should be.

Until then, I’m going to try not to worry about something that hasn’t happened yet.

After all, I’ve learned over the years that when it comes to my lab results, there’s not much I can do about the numbers once the blood has left my arm.

I just have to wait for the next chapter.

And hopefully, the next chapter is a little less exciting than this one.

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

≈ 2 Comments

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.

A Little Health Update (Spoiler: I’m Still Kicking)

11 Thursday Dec 2025

Posted by Tim Hughes Living with CML in Cancer, Leukemia

≈ 2 Comments

Tags

health, Iron, Kidney, Life, Melanoma, mental-health, Oncology, Pain, Potassium, update

I haven’t posted about my health in a while, so here’s your semi-regular episode of “What’s My Body Doing Now?”

First up, the oncology report: still no detectable blast cells for about eight months. 🎉 I’m not throwing a party just yet, because last time I got excited, my labs basically said, “Surprise!” and did their own thing. But for now, we’ll call it a win.

Iron levels? Yeah… those are still on strike. I’ve officially been diagnosed with chronic anemia, which explains why I’m always freezing and walking around the house like it’s January in Alaska. I’ve had so many iron infusions I’m pretty sure I’m 3% metal at this point. Waiting on Marvel to call.

And then there’s the potassium situation. Apparently my potassium levels have been creeping up. My oncologist thinks it’s tied to the kidney failure. Meanwhile, I barely eat any high-potassium foods, so my best guess is that my body is just freelancing at this point.

Skin cancer update: I had a melanoma spot and another bonus cancer removed from my left arm a little over a month ago. They left some lovely scars, which I now refer to as battle wounds because that sounds way cooler than “my dermatologist wanted a closer look.”

Now they’ve moved on to my back. I had a spot removed Tuesday that they think might also be melanoma. We’ll know more when the biopsy comes back, but let me tell you… back pain is a whole different universe. I slept approximately 12 minutes that night because I couldn’t get comfortable. Tylenol and I are in a committed relationship now.

Anyway, that’s the latest episode. Thanks for tuning in. Same time next month for whatever plot twist my body decides to add next. 😅

Update: Post-op Day 20

14 Tuesday May 2024

Posted by Tim Hughes Living with CML in bariatric-surgery

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Tags

Bariatric, cast, crow boot, Food, health, Iron, post-op, Surgery, Weighloss, Wife

On the day of my surgery, I weighed 260 lbs on my bathroom scales. That number is off because of my leg cast. This morning, after a cast change, I weighed 253.8. Nearly 7 pounds gone. But, on the day I started my diet in preparation for this surgery, I weighed 291 pounds. That would be 38 pounds gone. I’m happy so far with the weight loss.

Four of the five incisions have nearly healed. The one above my belly button still has the glue and looks rough. I’m assured by the doctor that everything looks good. I have an appointment with my surgeon’s coworker next week as my surgeon is on maternity leave. There are a couple of things that I need to discuss with him. The most important item is my iron levels have dropped dangerously low. I’m taking iron supplements so I’m waiting for my oncologist to call with an appointment for an iron infusion.

Although my iron level is low, I don’t regret having the surgery at all. The weight is coming off and I haven’t seen these numbers in several years. I haven’t had a soda or tea in three weeks, nor do I miss them. I was drinking six to eight Diet Dr. Peppers in a day. I replaced them with Sprite Zero after I realized the sodium content was lower in the Sprites. But still, I drank way too many sodas in a day.

I’m still waiting on my Crow Boot. I went to the orthopedic doctor yesterday hoping it had come in. I was told next week maybe. They put me in another cast and not a Moon Cast. Meaning I can see my toes now. By the time my Crow Boot comes in it will be four months in a cast. It has been a nightmare! I’ve mastered going down the stairs but coming back up sucks. Lately, I’ve been crawling up them. I don’t get out of breath nearly as bad doing the crawl. I don’t go anywhere I don’t have to go to. Well, I went to Bible study this past Saturday but that was just to get out of the house for a little while. My wife is not the best driver I’ve seen. She acts like a sixteen-year-old being behind the wheel for the first time. She over-corrects every move she makes. She literally scares me to death. She will make a fifteen-minute drive last over an hour because she doesn’t do interstates. Don’t get me wrong, I love my wife I just can’t handle her driving. She’s an excellent caregiver and I tell her that nearly every day. In fact, when I do get my Crow Boot, I’m taking her to the beach or to the mountains for a few days to show her my appreciation.

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