Category Archives: Leukemia

Feeling Good. New Goals in Life

11 Friday Oct 2019

Posted by in Cancer, Leukemia, Photography, Weight Loss

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As the title says I’m feeling pretty good right now.  My breathing is better, I’m taking iron infusions so my energy is better as well.  So, with that being said, I will be starting on a three month diet beginning on Monday of next week.  I have a plan, one that includes low carb, regular exercise; mental as well as physical.  I’ve joined a neighborhood gym that will help me during the cold and rainy days that are sure to be coming.  I will post regular updates here so I can keep up with my progress.  Also, I’m on Fitbit so if you would like to send me a request, you can see live results.  My email address in timhughes1963@gmail.com

See you on Monday!!!

 

Living With CML To Be Or Not To Be

03 Thursday Oct 2019

Posted by in Leukemia, Cancer, Photography, Family, Disability

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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 2

19 Friday Jul 2019

Posted by in Cancer, Leukemia, Photography

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Today was my appointment with my new oncologist.  The doctor looked like he was fresh out of med school.  He looked like he was about my son’s age, about 26 or so.  He is from Saudi Arabia or somewhere close by with a heavy accent. I had no trouble understanding him so he must have learned English at a young age.

He arrived to my appointment about an hour and a half late.  I was not impressed by this.  However, he did have a good excuse.  He said that his excuse was in two parts.  One, he had to do rounds for his partner who was on vacation this week and he had to receive a teleconference with a group in Korea that involved a case study he was involved with.

I went in this appointment thinking I was to have a bone marrow transplant aka stem cell replacement. So I was a bit surprised when he said that I would stay in my current med for a while.  He also stated that because of my current health condition, with my diabetes and cardiac issues,  I was not a good candidate for stem cell replacement. The option would still be there but not right now.  We will continue to “work” with the current meds and see if we can get them to work again.

The numbers, although higher than normal. were not really that high, according to my new oncologist.  He has seen higher and with that said, has gotten the numbers back down to a manageable rate with little to no problem.

I have little choice but to trust him.  We will see what he has to say and we’ll do what he asks. I go back in one month for more lab work and for another visit.

Living with CML

17 Wednesday Jul 2019

Posted by in Cancer, Family, Leukemia

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Let me introduce you to a friend of mine.  Her name is Tiffany.  She is currently in her third year of remission.  The above picture is the day she was admitted into the hospital for a month long round of treatment for CML.

Her story is a little different than mine.  She claimed that she had trouble taking her meds. She had terrible reactions when she took her meds and therefore quit taking them. Her CML advanced into something else and her doctors had to take more radical steps in treating her.  She was only treated for about a year with oral meds before she had her bmt.  Her Instagram account is full of pictures where she shows tubes running out of her nose and later being put in her chest.  These are pictures that I look at and put concern in my heart.

I’ve been put in the hospital before for different reasons but only for a short time.  I think the most I’ve ever stayed in a hospital is five days.  I can tell you that I like to have went out of my mind after staying in the hospital that long.  One thing that I know will be different, after about the third day, I felt pretty good.  Good enough to go home.  I doubt very seriously that after three or four days I’ll feel like going home.

There is still a lot that I don’t know about having a bmt.  I do know that before anything happens a donor will have to be found.  That could take a while even though I do have three siblings that could be a match.  I also found out that I could be having some kidney trouble.  This too could also slow things down I suppose.  I have an appointment with the kidney doctor next week.

I’m a person of worry.  I worry about everything.  The main worry I have right now is that once treatment starts I won’t be able to leave the hospital.  That means that all my family better stay safe.  I can’t be leaving the hospital to go to no funerals.  Things that get broken will have to stay broken until such time as I feel like repairing them or I can get someone there to repair it.  I may get someone that I used to work with to check on my wife from time to time to make sure nothing needs repaired.

Life is an Adventure Part 1

17 Wednesday Jul 2019

Posted by in Cancer, Leukemia

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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

Denied!

04 Monday Feb 2019

Posted by in Cancer, Leukemia, Photography, Retirement

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Three out of ten people who file for disability actually recieve disability the first attempt.  Unfortunatly, I was not one of those three.  Oh well.  I knew I would be denied.  I had a feeling.  I’ve already sent my paperwork in to an attorney and even he said it could take 18 to 24 months to get a hearing.  I’m not in a hurry.  Just taking every day one day at a time.

Everyday is a Blessed Day!

11 Friday Jan 2019

Posted by in Cancer, Leukemia, Photography

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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.

Long Overdue

10 Thursday Jan 2019

Posted by in Cancer, Family, Leukemia, Pets, Photography, Retirement

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It’s been since September since I’ve posted anything so I figured I’d do a little update on what’s been going on. First of all, I went to the dentist today and had some work done and I had to take a prescription pain pill to take care of the pain that I was in.  So, if this doesn’t make sense, that’s why. As stated in my last post, I’ve retired.  I can’t begin to tell you how happy I am about that. I get updates from one of my co-workers every once in a while and let me tell you when I get off the phone with him, it makes me so happy to think that I no longer work at that place.  The management at that place has taken a turn for the worse and it seems that I left just at the right time.  The stress that I felt while I was there is no more.  That within itself is worth retiring over.

So, what is my plan since retiring?  I’ve got several irons in the fire, none of which requires getting up and going to a regular job.  I was blessed with an excellent pension and my 401k didn’t look bad at all either.  I made an appointment before retiring with a financial planner and he told me that I had nothing to worry about.  In fact, I got a little raise since retiring so I think we’re going to do just fine.

On most occasions, I get up with my wife when she gets up to get ready to go to work.  I usually sit and talk with her while she’s eating breakfast.  After she leaves, I usually take a shower and go to the garage and work on some woodworking projects.  I take care of the laundry and try to have dinner cooking when my wife gets home from work.

Other things such as setting up my camera so that it can take pictures of the bird feeder have been another little project that I’ve been working on.  It’s the simple things in life that make it interesting.  My cats and I enjoy watching the birds in the morning while we’re sitting in the kitchen spending time with the wife while she’s eating breakfast.

On another note and this will be the last of this update for now.  My cancer numbers are starting to look pretty good but on the other side of that coin, my iron levels have started to plummet.  I’ve had to do two iron transfusions and had to have a colonoscopy and an endoscopy to find out where I’m bleeding out.  Ulcers, I’ve got two bleeding ulcers.  Another pill to add to my pharmacy list.

Thanks for taking the time to read and I’ll post again soon.

Health Report

27 Thursday Sep 2018

Posted by in Cancer, Leukemia, Photography

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For the past six months I have been on a new drug called Bosolif.  At first I was on 500 mg per day.  After a few months a test was performed and my numbers increased.  The medicine was not working.  Not only was it not working, I could tell that I had fluid around my lungs again.  Walking had started to become difficult.  With caution, my oncologist increased my meds by 100mg and he orered a CT scan to see how much fluid had accumulated.  After a week, the results of the scan had come back and, indeed, there was a small amount of fluid around my right lung but not my left.  According to my oncologist, if my meds were causing the fluid, it would accumulate on both sides at the same time and not just on one side.  I was diagnosed with broncitus a couple of weeks prior and he thinks that’s the reason for the fluid.  Since my increase in the meds, the last test results that came back showed that my numbers has fallen.  Nowhere close where they need to be but at least they are falling.

On a side note; I have finished my disability paperwork.  I submitted the online aplication a couple of days ago and sent in the hard copies today.  Hopefully I’ll hear something in a couple of months.

 

Tim

Retirement Is Close At Hand

07 Saturday Jul 2018

Posted by in Cancer, Leukemia, Nature, Photography

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I’ve been absent of late and for a good reason.  Although the doctor stated during my last oncologist appointment that my medicine is not working, I’m still feeling pretty good so I’m taking advantage of it and getting some things done around the house.  With that being said, I had to increase the dosage by 100mg and it’s starting to take a toll on my breathing.  Not much mind you but just enough to where I know that eventually, I’ll have to have more fluid drained from around my lungs.

I’ve got 39 more days to work and boy am I ready.  It can’t come fast enough. I’m supposed to meet with HR on Tuesday to discuss my retirement and post-retirement insurance.  More about this later.

The last four years have really played havoc around my house.  I’ve been fortunate to have a wife who is willing to cut the grass around the house but the other duties have gone by the wayside. My deck on the back side of the house needed cleaning four years ago and now it’s, well, pathetic.  The deck was black with mold and some of the hand railings needed to be replaced.  For the last three weeks, I have spent the afternoons and weekends cleaning this deck.  I have finished with the inside now to do the outside and then paint or stain next.

I have found the time to do a little bit of photography in the last few months.  I’ve really taken a liking to lightning pictures.  I’ve spent hours waiting on a storm to come through just close enough away that it would make a good picture while staying far enough away that I won’t be a target for a lightning strike.  I’ve had a few storms to come through.

There was a Fourth of July celebration up the street and I was fortunate enough to take some pictures of some fireworks from my front yard.  I didn’t get all I wanted because at the same time I was trying to get my drone off the ground to video the event.  My phone kept locking up so I had to settle with just the pictures.

I am currently sick with a sinus infection.  I went to the doctor today.  The drainage is making me cough and my chest is hurting.  I had plans on washing my truck and cleaning the outside today but that didn’t happen.  Maybe I’ll feel like doing it tomorrow.

Until next time.