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

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Tag Archives: CML

Not Quite There but Better!

24 Wednesday Aug 2016

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

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Tags

CAT Scan, CML, Diuretics, Exercise, Lungs, Oncologist, Pills, Vacation Time

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It has come a time in my life where I have to ask myself will I ever be as healthy as I used to be.  It seems that every time I get better I have another set back.  Every time I gain some vacation time I end up sick and  using most if not all of it trying to get well again. It’s usually after I gain about two weeks of time when something happens and I lose down to a day or so.  Currently I’m at 24 hours so I’ve got about a month to go before I can reset the clock.  In the meantime I have to be at work and if I have any doctor’s appointments, which I do, I’ll have to work over to make up for the time I take off or else I’ll lose more time.

I’ve spoken to my oncologist and he’s instructed me to resume my CML meds but at a lower dose. I’ve having to cut my 100mg pill in half then cut one of the halves in half again.  That way I take one half and a quarter so hopefully that’s about 75mg. I don’t like doing it this way because I’m not sure I’m getting the dosage right.  The oncologist seems to think that I can get the pill in a 80mg strength tablet and that’s what he really wants.

To say that I’m not concerned about the fluid coming back into my lungs is an understatement.  I’m deeply concerned and I’m wanting to know if there’s a test that can monitor the amount of fluid being stored in my lungs.  Currently the only way is a CAT scan and I can’t keep going in for a CAT scan every few weeks. So, according to my doctor I’ll just have to monitor my breathing on my own.

With all the diuretics that I’m on I’m losing weight.  I’m down over ten pounds since I had the stents put in.  I am feeling better but the breathing is still not 100 percent. I am back climbing the stairs at work but only one floor at a time.  Next week I’ll add an additional floor. I still get quite winded but I’m able to recover much quickly.

I’m still plugging along and hopefully I’ll be able to do more exercise but right now I’m going to take it easy and not push myself too hard right now.  Definitely later though.

It Sucks Getting Old :(

08 Friday Jul 2016

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

≈ 1 Comment

Tags

Cancer, CML, Doctor, Leukemia, Oncologist

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For several months now I have been undergoing a barrage of test by one doctor or another. If you’ve ever seen the movie National Treasure, it’s like one clue leads to another clue.  It all started with a personal evaluation that was performed on me back in March from my boss.  In the months prior to my evaluation I had made several costly mistakes.  Luckily they were all monetary and not personal injury.  During my evaluation my boss discussed with me that he was worried that either I would be harmed by my actions or the person I was working with would be harmed.  He also stated that until I was checked out by my physician I would be temporarily placed on light duty with any safety related responsibilities.   At first I was furious as you can imagine but the more I thought about it the more I realized he may be right.  Although I didn’t want to admit it I had been experiencing some forgetfulness but I had chalked it up to getting old.

The first test was with a neuropsychologist.  I failed miserably.  One test consisted of the nurse reciting a list of paired words, about 50 I think, that after she recited the list I was supposed to repeat to her one of the words that was paired too.  Example; Truck-Bread, Dog-Umbrella.  She would read Truck and I was supposed to tell her Bread.  I failed at this test.  There were several other tests that I failed at.  The results that were given to my primary care doctor was that I had three areas of disabilities, motor control, memory loss and multitasking.

Another test that was performed was on my feet.  I had been put in the hospital with influenza A and pneumonia.  After spending a week there I was released to spend another week at home.  While I was off I had an appointment with a neurologist in which I spent over an hour being hooked to electrodes that shocked my feet to find out just how numb they really were.  After the tests were performed I was given the diagnoses of diabetic neuropathy.  Hell, I already knew that.

During one of my visits with my oncologist I was given a test to check out my immunity because being admitted twice to the hospital in less than six months set off a couple of alarms.  He did a preliminary test and it came back showing signs of IgG deficiency (immunoglobulin G). I went back on Wednesday of this week to let them do a more thorough test.  I’ll find out the results of those test sometime next week.

Today I went to another neurologist that all i did was talk and answer a few questions.  A small word association test was performed and again I failed.  He asked me to remember three words and he would ask me later on to recite these words back to him. When asked a few minutes later I couldn’t remember the three words.  I saw the doctor for only a few minutes after which he wanted to do a blood test and an MRI.  The blood test was done downstairs but the MRI will have to be scheduled once the insurance company approves the test.

So, as you see I’m falling apart.  I’m not letting it get me down.  Just living day to day right now.

Patience is Not One of my Virtues!!

28 Tuesday Jun 2016

Posted by Tim Hughes Living with CML in Cancer, Photography

≈ 3 Comments

Tags

Cancer, CML, Doctor, Lab Result, Oncologist

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I called my oncologist twice yesterday and didn’t hear a word from him.  I know Monday’s is his busy days so I didn’t get too upset but when he didn’t call me back first thing this morning I decided to give his office a call again.  I again left word with his receptionist and waited for his phone call.  He finally called me back about an hour later and after I told him what I wanted and why I was calling he sounded offended that I would question his earlier report.   Anyway, the information that is posted on the website is wrong.  The correct result is 0.0001% which is the lowest it’s ever been since my diagnoses.  The website has it listed as 1.0%, which is quite a bit different.

Happy Weekend!!

24 Friday Jun 2016

Posted by Tim Hughes Living with CML in Cancer, Leukemia

≈ 1 Comment

Tags

Cancer, Cats, CML, Doctor's Appointment, Howard Cosell, Oncologist

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This has got to have been one of the longest weeks in history.  After being off for two weeks, one of which was spent in the hospital, the other at home recuperating, working a full week and then off for another week; it’s been difficult for me to get myself out of bed and off to work.  Motivation has been the key.  With only .086 hours of PTO (Paid Time Off) I pretty much have to go to work or else I don’t get paid and with that the possibility of being disciplined is pretty much been my motivation to go to work.

The whole month of May was pretty much filled up with doctor’s appointments.  With the fact that I knew that I was going to take off a week in June, I wanted to make sure I had plenty of time left over for a cushion just in case I had some medical issues or one of my kids or wife, for that matter, got sick.  Not knowing that I myself would have to go back into the hospital for the flu and pneumonia didn’t help matters any. So, with that thought in mind I would always work over to make up for any time that I had to take off for a doctor’s appointment.  Made for a very long month.  Anyway, one of the doctor’s appointments was with a neurophysiologist. Not by my choice but my employers. It seems that my boss wanted me to go because of some mistakes that I’ve been making at work.  Some of these mistakes were quite costly but luckily none were any danger to me or to my co workers.   The appointment lasted for four hours and I failed several tests miserably.  I talked to the doctor that performed the tests the next day and he told me that I had some sort of mental disability.  He did not give me the diagnoses but told me that he would file a report and give it to my general practitioner.  It’s been over a month and I’m still waiting for the results to come in.  Another test that was performed was done while I was home recuperating.  It was an appointment to check my feet.  I spent two hours getting my feet shocked only for them to tell me what I already knew, Diabetic Neuropathy.

Back to the mental disability.  With being diagnosed with CML and taking a form of chemotherapy, I’ve been told, not by doctors but by other people to look into Chemobrain. Personally, I don’t think I have this because I haven’t had a bone marrow transplant.  But I do have most of the symptoms though.  I have noticed that my short term memory is not as good as it used to be and while I can remember some things deep in my childhood other memories during that same time frame I can’t remember at all.  At first I just counted it as getting old but after losing several arguments with the wife I have come to the realization that maybe it’s not just about getting old any more.  And with the current result from the neurophysiologist I tend to agree that I do have some sort of mental issues.  What can be done about it remains to be seen.

A bit of good news is that while I was away on vacation my oncologist called me with the results of my last set of tests.  It seems that my Bcr-Abl tests came back any my numbers were a whole lot lower.  In his words, “the numbers bottomed out”.  He didn’t give me the exact numbers but he did say that they have not been any lower since my diagnosis.  I can’t wait to go back in two weeks to see what the numbers actually are.

With all that’s happening in my life right now, especially with my health, my friends are all concerned that I would try to end it all.  I’m not sure as to why they feel this way.  I’ve never given them any cause for concern in that area.  At least I don’t think so.  All I know, there is no way there is any possibility of that ever happening.  If someone even remotely suggests that I committed suicide someone better be on the lookout for a murderer.  I’ve got too much to live for right now for me to commit something cowardly as that.

365 Day Photo Challenge 363/365 “Feeling Miserable”

28 Monday Dec 2015

Posted by Tim Hughes Living with CML in Photography

≈ 1 Comment

Tags

365 Day Photo Challenge, CML, Oncologist, Side Effects

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This is going to be short and sweet.  I’ve got a headache that I’ve had for several days and today my chest started hurting when I breath. These are all  listed side effects of the new meds.  I called my oncologist today and he has taken me off the meds for a week.  I’m hoping that I’m coming down with a cold or something and it’s not my new meds.  If it’s not one thing it’s another.

365 Day Photo Challenge 356/365 “To Be Pain Free For a Day”

21 Monday Dec 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Cancer, Chronic Myeloid Leukemia, Chronic Pain, CML, Cycling, Diabetic Nerve Pain, Pain Relief

https://tchphotography.smugmug.com/2015-Cheaha-Challenge/i-p3mcRJb/A

I was thinking earlier this afternoon when the last time I had a day that I went pain free.  Yesterday.  I would have to say yesterday I was relatively pain free for a day.  Lately it’s been my feet giving me problems and now my kidneys.  But yesterday I was pain free because I didn’t have any pain in my feet and my kidney didn’t hurt.  Today, however, my feet were barking toward the end of the day but my kidney remained calm and pain free.

As I sit here whining about my pain, I’m reminded that there are a lot of people that are worse off than I am.  There are days that I hurt, a lot.  But, like yesterday, I didn’t have any pain whatsoever.   Some people can’t say that.  They have to live with chronic on a day to day basis.  There is no pain medication that can give them any relief whatsoever.  Knowing this makes me feel like a heel complaining of my insignificant pain when on most cases I can take a pain pill and for the most part feel better within thirty minutes or so.  There are those that medications can’t do anything for them.  I can’t image that.

I’ll say a prayer for all those in need of pain relief and I’ll include myself in this prayer.

“Life Goes On!”

 

365 Day Photo Challenge 352/365 “New Medication”

17 Thursday Dec 2015

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

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365 Day Photo Challenge, Cancer, CML, Medication, Sprycel

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I heard from my oncologist today and I’ve got a new drug to take for my CML.  The survival rate is no more than the previous drug but as long as it keeps me alive I’m good. It also has about the same side effects as the other so unless there’s something I don’t know about I guess I’ll be ok with it as well.

I stayed home again today with this kidney stone that has yet to pass.  I had to get up early this morning to take a pain pill but so far today I’m moderately pain free.  I’ll be going into work tomorrow regardless if I’m pain free or not.  I’m low on time so I have to go in.

365 Day Photo Challenge 349/365 “‘Tis the Season but I’m Not Feeling it”

14 Monday Dec 2015

Posted by Tim Hughes Living with CML in Photography

≈ 2 Comments

Tags

365 Day Photo Challenge, Christmas, CML, College, Kids, Leukemia, Medications, Twins

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I go through this every year.  It’s nearly Christmas and I’m just not in the mood for it.  It’s not that I’m depressed; it’s more of disappointment that I can’t afford to more for my kids.  The older they get the more expensive their needs or wants get and we can’t afford to get everything they ask for.

This year my wife and I discussed the fact that the girls will be going off to college next year so we’re going to make sure that we help them with things like laptops and other necessities for college.  With that said, that will be two of everything.  One of the things that we will be trying to get them within the next few months is a car.  This brings up another problem.  The girls haven’t decided on where they want to go to school.  Each one has stated that they want to go to separate schools and if they do go to different schools then we’re going to have a huge problem.  We can only afford one car.  I want the girls to make their own decision on where they want to go to school but in reality they will have to go to the same school or else one will be walking.

And of course I’m somewhat concerned about my CML levels going up the way they have.  I’ve been back to the oncologist and they’ve done more blood work to determine what the next step will be as far as the medications that I will be on, being that the ones that I’m on isn’t working anymore.  I’m hoping to hear back from him this week.

“Life Goes On!”

365 Day Photo Challenge 336/365 “Me Time”

01 Tuesday Dec 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Cancer, CML, Lukemia, Me Time, Oncologist, Sick

https://tchphotography.smugmug.com/HDR/i-M4pCJfS/A

I have an oncologist appointment tomorrow afternoon.  All I’m going to do is give some blood so that they can do some more blood work to find out why my BCR abl has shot back up.  Afterwards I’m going to have some much deserved ME time.  Right now I’m fighting off a cold and I’ve got a sore throat and some congestion.  I think I’ve caught my daughter’s cold.  If I’m not much better tomorrow I may be spending my me time at the doctor’s office.

“Life Goes On”

365 Day Photo Challenge 331/365 “Happy Thanksgiving”

26 Thursday Nov 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Cancer, Cast Iron, CML, Cooking, Dutch Ovens, Family, Leukemia, Recipes, Thankfull

Thanksgiving

I’m stuffed to say the least.  I’m thankful that my family is here with me today.  With the kids getting older I’m not sure how much time we have with them.  I know that they will always try to come home for the holidays.

I’m also thankful that I’m still here to be able to spend time with my family.  With the diagnosis of CML my life was changed forever.  I’m thankful for the men and women who discovered the drug and for all those patients who did the case study that allowed the passage of this drug to take place.

We spent time with my wife’s family today.  Tomorrow I’ll be able to spend time with my mom and dad.  I’ll get up early tomorrow and cook breakfast for my family then I’ll start working on a Dutch Oven dish to take to my parents.  This will be the first time that I’ve cooked for the parents in my Dutch Ovens so I’m excited about this.

Speaking of Dutch Ovens, I have a new blog that I would like for you to check out.  It’s going to be full of different recipes that I have gathered over the past several years.  If you like cast iron cooking this will be for you.  If not, then don’t feel obligated to follow.  I posted my first post just moments ago.  https://thecastironblackpot.wordpress.com/

Again, Happy Thanksgiving everyone!

“Life Goes On!”

 

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