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Tag Archives: Tests

I Hate Hospitals

24 Monday Aug 2026

Posted by Tim Hughes Living with CML in Family, Life

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Tags

Bloodwork, Complications, Daughter, Doctor, ER, Family, health, Hospital, Irritated, labs, Life, love, Mono, Scans, Sick, Sickness, Tests, writing

Hospitals are not my thing.

I ought to know. I’ve spent my fair share of time in them over the past several years.

For the last few years, it’s been my mom who has had to spend time in the hospital for one reason or another, and my siblings and I have spent plenty of days sitting beside her during her stays.

And honestly, it’s one of the worst things I’ve ever had to do.

Not because I don’t want to be there for my family—I absolutely do. But sitting in a hospital room all day trying to make small talk is just not my idea of a good time.

When I’m the one in the hospital, I’d much rather be left alone. Give me a book, a television, and a pillow, and I’ll be perfectly happy to entertain myself. When people come to visit me, I feel like I have to entertain them, and that’s the last thing I want to worry about when I’m sick.

Unfortunately, for the past few days, I’ve found myself spending quite a bit of time in a hospital.

This time, it wasn’t for me or even for one of my parents.

It was for one of my daughters.

She has been in the hospital because of complications from mononucleosis—Mono, for short. Her spleen is enlarged, and she developed an infection that the doctors wanted to make sure wasn’t being caused by something other than the Mono.

Exactly why it took several days to figure all of this out is still beyond me.

Her boyfriend took her to the ER Thursday afternoon around 2:00. She wasn’t seen until sometime after 6:00 and wasn’t admitted to the hospital until the following day.

Four hours just to be seen, and then another night before they decided to admit her. Maybe I’m just impatient, but that seemed a little ridiculous to me.

They did scans. They drew blood. Tests were run. Promises were made—and apparently forgotten.

Once she was finally admitted, it seemed like the hospital had no idea what the ER had already done. So, they started doing tests all over again.

It was almost like she had checked into the hospital and said, “Hi, I’m here. Let’s start from the beginning.”

On Saturday afternoon, the hospitalist came in and said she wanted to keep my daughter one more night for observation. She assured us that, barring any problems, she should be able to go home the next day.

The next morning, my other daughter said she could stay a little longer so she could take her home when she was discharged.

My wife and I went to church and then went out to eat afterward. We hadn’t planned on going to the hospital that afternoon, but eventually made our way there so we could relieve my other daughter.

Several hours passed.

Still no word about my daughter going home.

Finally, I went to the nurses’ station and asked what was going on.

That’s when we found out the doctor had actually decided earlier that my daughter was NOT going home.

Wait… what?

When exactly were we going to be told this?

If I hadn’t gone to the nurses’ station and asked, there’s no telling when we would have found out.

Needless to say, I was livid.

The doctor finally made her way into the room about three hours after I had made my inquiry. After expressing my disappointment that no one had bothered to keep us informed, she explained that she was trying to consult an infectious disease doctor to make sure there wasn’t something else going on.

That’s when my wife pointed out that an infectious disease doctor was already supposed to be involved.

Apparently, the hospitalist wasn’t aware of that.

The ER doctor was supposed to have already ordered the consultation, but somewhere along the way, someone dropped the ball.

And unfortunately, my daughter was the one lying in that hospital bed while everyone tried to figure out whose ball it was.

This morning, the infectious disease doctor finally reviewed her bloodwork and assured my daughter that there was nothing else going on. Everything she was experiencing was related to the Mono.

Her instructions?

Go home.

Rest.

Give it a week or so.

That’s exactly what she’s doing now.

She’s home, resting, and hopefully on the road to recovery from what has been a pretty debilitating illness.

I know hospitals and healthcare workers are dealing with tremendous workloads, and I appreciate the people who take care of us when we need them.

But sometimes I really do wonder how we’ve managed to make it this far in our healthcare system.

Maybe I’m just getting old.

Or maybe I’ve spent enough time in hospitals to know that sometimes the biggest challenge isn’t figuring out what’s wrong with the patient.

It’s figuring out what everyone else is supposed to be doing.

For now, though, I’m just thankful my daughter is home.

And I think we’ll all sleep a little better knowing she’s there.

One Positive Result

18 Tuesday Aug 2026

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

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Tags

: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.

Gone Fishin’… Mentally. Physically at the Doctor’s Office

01 Wednesday Apr 2026

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

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Tags

adventure, Appointment, Bass, Calendar, Events, Fishing, kayak, Kayaking, Medical, MRI, Nature, Tests, Travel, Weather, Wind

Have you ever hit one of those stretches where you really want to do something—but life just keeps stacking the deck against you?

That’s me right now… and fishing.

The weather—well, the temperature at least—has been absolutely perfect. The kind of weather that makes you start mentally packing your gear before you even finish your morning coffee. I’ve been itching to get the kayak in the water.

But of course… It’s never that simple.

First, there’s the wind.

For the last ten days, the wind has been doing everything except cooperating. Now, sure, you can go kayak fishing in the wind… if you enjoy turning your peaceful fishing trip into a CrossFit session. Unless you’re on the water at daybreak, you’ve got a very small window before the breeze turns into a personal trainer yelling, “Paddle harder!”

Nothing quite like trying to hold your spot while questioning your life choices.

But honestly, the wind isn’t even the biggest problem.

Even if the water was as smooth as glass, my schedule has been anything but.

I’ve had something going on nearly every day—mostly doctor appointments. And just when I think I’ve finally got a free day lined up, my phone rings with, “Hey, just a reminder…” At this point, I’m convinced my calendar is just a suggestion, not a plan.

Case in point—I went to the doctor the other day about my back. For years, I thought it was just normal wear and tear… turns out my back has apparently been keeping secrets. Not the fun kind either.

So I finally spot a window. Tomorrow morning? Perfect fishing opportunity. The wind isn’t supposed to pick up until around noon. I’m already picturing that first cast.

Then the phone rings.

It’s the doctor’s office.

“Your MRI is scheduled for tomorrow.”

Of course it is.

So instead of being out on the water trying to catch fish, I’ll be lying perfectly still inside a giant tube while it takes pictures of all the bad decisions I’ve made with my back over the years. Honestly, if that machine could talk, it’d probably just shake its head and say, “Yeah… you probably shouldn’t be kayak fishing either.”

At this point, I’m not even sure what’s more out of alignment—my schedule or my spine.

Looking ahead to next week, it’s the classic tease. The temperature is supposed to drop again early in the week, then warm back up later. But it’s too far out to know what the wind’s going to do… and at this point, I’m convinced it’s working with my doctor.

One of these days, everything is going to line up—the weather, the wind, my schedule… and hopefully my back.

And when it does, those fish better be ready.

Because I’ve got ten days’ worth of missed fishing—and a medically questionable spine—ready to hit the water.

3/29/2020 Update

29 Sunday Mar 2020

Posted by Tim Hughes Living with CML in Cycling, Diabetic, diet, Gym, Weight Loss

≈ 5 Comments

Tags

Appointment, Exercise, Flu, followers, health, Sick, Tests, treadmill, Yard Work

How is everyone doing during the quarantine? I’m doing fine I guess.  I did something stupid the other day and I really hope that it doesn’t come back to bite me.  I’m expecting a house painter to come early next week to start painting my house.  In order to do the front, I had to get rid of my hedge bushes.

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They’ve been there for years and have grown quite big and tall. I took a chain saw to them which made for quick work and after the front was exposed I noticed a large hole that went underneath my front stoop.  I had to purchase some bags of dirt to fill it in before the painters showed up.  The stupid part is when I went to Lowes to purchase the dirt.  The place was packed.  It looked like they were going to have some sort of give-away.  I should have turned around then but I didn’t. When I went to check out the line was over twenty people long.  With my health the way it is, I should’ve turned around but instead, I stood in line with all those other people.  I won’t be doing that again.

IMG_20200326_125054

The house looks bare now but at least they’re cut down now.  The only thing I have to do now is pull up the stumps.  I’ll do that later on.  The grounds too wet to get in there with my truck and I don’t want to ruin my yard with ruts or worse get my truck stuck.

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IMG_20200328_134450

As of this morning, I’ve lost 9.2 pounds.  I’ve got to get back on my treadmill so I can lose the other five pounds so I can get on my bicycle.  Plus, with the virus going around and us being quarantined, I’m making more and more trips to the refrigerator which is not good.  I’ve still got this nagging cough which when I get out of breath makes it hard for me to breathe and I have a coughing fit.  I’ll either start back this evening or wait until Monday to start.

I have a doctor’s appointment come Wednesday.  I’m sort of excited about going.  I’ve been keeping up with my sugar and it’s down from 9.9 to 7.2.  I’ve already seen the medical test report.  So I’m pretty excited about that.  My triglycerides are high and I need to do something to get it lower.

I’m near to 400 followers now.  When I started this blog I never thought it would be this high.  I’m about to go through and delete a few because some I have found are nothing but spam and sex promo sites.  I have no idea how I got those followers.  Anyway, thanks for following me.

Stay home and stay safe everyone!!

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.

 

 

 

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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