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Tag Archives: Drugs

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.

Everyday is a Blessed Day!

11 Friday Jan 2019

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

≈ 2 Comments

Tags

Cancer, Drugs, Leukemia, Medication, Medicine

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It’s been nearly five years since my diagnoses of CML, a form of Leukemia.  If I had received the diagnosis back in the 1990’s I would have been told to go home and make my funeral arrangements.  With today’s modern medical advancements, which I’m highly thankful for, those of us with this diagnosis are able to live a somewhat normal life for many years.

There is a “go-to drug” called Glevic that is prescribed to most all new patients.  This drug worked for me for a while but stopped and I had to find something else.  The next drug caused more problems than the actual cancer did.  This new drug I’m on is working for now but is causing fluid around my heart and lungs but not as bad as the previous drug.

Is my life back to normal, no.  There have been many changes that had to be made to make my life a little better.  Because of the fluid around my heart and lungs, I’m no longer able to do a lot of the things I used to do.  Basically, I had to stop anything that would cause me to get out of breath with exertion.  That doesn’t mean I’ve given up.  I still try to walk and stay active. Every morning that I wake up I feel blessed to still be here. I’ve got a lot to live for and I hope I’m here for a while to come.

3/16/2018 Oncologist Update

18 Sunday Mar 2018

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

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Bosulif, Cancer, CML, Doctor, Drug Card, Drugs, Family, Insurance, Medication, Prayers, Test

Oncologist Update: Because of some miscommunications with the insurance company, go figure, I have not been approved to be on my new medicine yet. I may end up walking the paperwork to the department myself if they keep losing it. Anyway, it’s been six weeks or more since I’ve had any CML meds and we, more so me than the doctor it seems, are starting to get a little concerned that my numbers might get a little high. If the insurance company approves the meds, it could take up to three weeks before my meds arrive. Nothing to do but wait. But, as luck would have it, the representative for the new drug was there in his office. He gave my doctor a card for a free 30 day supply which should arrive by Tuesday of next week. This should give my insurance company time to process my approval for this drug.

Bloodwork. It’s been six weeks since my last lab. My last one wasn’t good at all. Every one of my numbers was either very high or very low. Yesterday’s numbers were normal for the most part. This was in large part the effect of the drug I was on. The side effects just made my daily life impossible to deal with.

New Drug: Bosulif is the name of the new drug. Right now I’ve been on two of the most common and there are only a few left that is approved by the FDA. Thanks to Karen Davis-Hudson she eased my mind about some of the side effects that were mentioned in the insert. However, Karen, I think you mentioned that 1/10 developed fluid retention, my doctor said 4/10. Not that much of a difference. The other side effects I think I can handle.

The Good News: The doctor and I both agree that the fluid in my lungs is gone and we’re going to have a positive attitude that it will not return and that this medicine will be the last one I have to be on because this one will work. I can breathe, my color is back and most importantly, I feel good. So much so, that if the weather holds, I’m going to try to get my bicycle out one day this weekend.

This is all due to all the prayers that have been lifted up for me and my family. Thank you so much.

365 Day Photo Challenge 203/365 “Health Insurance; Love it/Hate it”

21 Tuesday Jul 2015

Posted by Tim Hughes Living with CML in Photography

≈ 1 Comment

Tags

365 Day Photo Challenge, Cancer, CML, Copay, CPAP, Deductible, Drugs, Gleevec, health, Insurance, Medications, Photography

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Health Insurance can be a love/hate relationship.  I am fortunate to work for an insurance company and I get my insurance at a discounted rate but it’s still very expensive. I still have copays and I still have deductibles that I have to meet before the insurance will pick up.  I fill sorry for those that have to fork out thousands of dollars each year for insurance.

Today I had to go pick up my new CPAP machine.  When the lady called me to tell me that I now qualified for a new machine I asked her how much I owed.  She checked her computer and said that my deductible had not been met and that my payment would be around $500.00.  I don’t have $500.00 to spend right now and told her that.

I have CML, a rare form of Leukemia.  My medication is very expensive.  It averages out to be around $600.00/pill.  I take one pill a day and my prescription is for a thirty day supply.  My insurance out-of-pocket yearly deductible is $2500.00 and my prescription costs $18,000.00 a month.  That means that I would have to pay $2500.00 for the first month and the insurance company would pay the remainder.  But first, and the most important thing is that I would have to come up with $2500.00 before I could get my first prescription.  Pocket change, right?  Not for me.  Who has $2500 just laying around?  Again, not me.

A little known fact is that some drug companies want you to take their drug.  So much so that they are willing to pay you to take it.  I am very fortunate to be on such a drug.  Gleevec is the manufacture of the drug that I’m on and they offer a financial assistance program to those that can’t afford the ridiculous prices of the medications. I first read about this on their website once I found out that I would be taking the drug.  At first I thought that it was only for those that didn’t have insurance but thankfully I was wrong.  I called them up and they paid all but $100.00 of the $2500.00 of my out-of-pocket deductible.  Wonderful news!!  I pay the pharmacy $100.00 at the beginning of the year and Gleevec pays the rest and I don’t pay a dime the rest of the year for this drug. That’s not the only good news that came out of this.  Remember the CPAP?  It seems that my CPAP was covered under the same plan.  Being that my deductible was indeed met I walked out with a new CPAP and a new mask for $00.00.

“Life Goes On!”

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