Author Archives: Tim Hughes Living with CML

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

Quote

West Blockton Coke Ovens Park — The Travel Bug Man

18 Monday Mar 2019

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West Blockton Coke Oven Park is located just west of Birmingham, Alabama in a small town of West Blockton. The ovens were used to make coke, a by product of coal. Before the ovens closed in 1909, there were 467 ovens and produced over 600 tons of Coke per day. The park is open everyday […]

via West Blockton Coke Ovens Park — The Travel Bug Man

The “List”

26 Tuesday Feb 2019

Posted by in Cancer, Photography, Retirement

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It’s spring down here in the deep south.  At least for now.  Cooler temps along with some rain expected next week.  For those that are keeping up, my to-do list is slowly getting shorter; and I do mean slowly. Being that the weather has turned a little warmer, I’ve taken advantage of it and I’ve been doing a lot of work outside.  My back yard is slowly showing itself again.  I’ve spent several days cutting Privet and dragging the limbs to the street.  My back yard has a slight incline so after cutting the limbs I  have to climb this incline so I’m easily winded and I have to take a lot of breaks.  A person in good health would have already finished with this project and moved on but it’s taking me a little while longer.  I’m still not finished with it.  The limb collector only picks up once every other week so I don’t want a pile of limbs just sitting there waiting to be picked up. So, I’ve been working on doing some painting in the meantime.

Like I’ve stated on an earlier post, I’ve started using a task list to help me stay on target.  I must say that it’s making a huge difference.  The weather has a lot to do with what task I work on but as long as the weather stays nice for a few days I’m able to get quite a bit accomplished.  If the weather is cold or rainy I’ll stay inside and concentrate on doing some housework or do some woodworking projects.

Cooking has always been something I like doing so since I’ve retired I make it a point to help the wife with the cooking.  When both of us worked, it was difficult for my wife to create dishes that were both healthy and quick.  She is tired most days when she gets home so her choices for dinner was usually something unhealthy.  Now that I’ve retired, I do most of the cooking during the week.  I do a lot of grilling, very little frying and some slow cooking in my crockpot.  Most of the items I cook is new to both me and my wife so it’s made dinner very interesting.

Life goes on!!

Happy Valentines Day

14 Thursday Feb 2019

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As a child, I was never fond of Valentines Day.  I remember just like it was yesterday.  The teacher would always tape a bag to the back of our desks and each person would be allowed to drop their Valentines Day card into the sack.  We would do this toward the end of the day so as soon as everyone delivered their cards we would be dismissed and go home.  That’s when I realized just how many friends I had.

The day before our party, my mom and I would count the cards and make sure we had enough for everyone to get one.  I would then sit at the kitchen table and write each kids name on the card then print my name at the bottom.  I wanted to make sure everybody knew that I had given them one.  Most of the cards that I received from our party were not as nice as the ones that I gave out.  Some even had the words, “I hate you.” on them.  I knew I would get them.  It happened every year for some reason so I would rush home and quickly go through them and hide all the ones that were not nice.  That way my parents were never to see them.

I don’t know what I did or what I said but from the 1st through the sixth grade I was the one who was being bullied and Valentines Day was one of the worse days in my childhood.  Telling the teacher or an adult only seemed to make it worse.  One day, I decided that I would end it by sticking up for myself.  One of the kids decided to pick a fight with me during lunch.  The teacher said something to the bully of the day but that only made things worse.  The bully then decided he would meet me after school.  I was there waiting for him and it seemed that the rest of the elementary school was there as well.  I hung in there for a couple of good swings but got jumped by others and ended up on the bottom of the pile.  To this day I don’t know why it ended because after it was over I didn’t see an adult anywhere. I got myself up and walked home.  That was my last day at that school.  My parents moved me to another school the very next day.

I made it through my childhood years without further incident.  As a parent of three, I never have told them about my experiences as a child but I have always told them to tell us if they have ever felt like they were being bullied.   Thankfully, they never have.  Not saying that they were, just saying that they have never told us that they were being bullied.

Being bullied can have a lasting effect on a child.  Did it have an effect on me?  I guess it did but I think I turned out okay without having to go to some type of therapy.  Some kids today can’t take it and they don’t make it to adulthood.  I think it’s so sad to hear this.  It breaks my heart because I know what this child is going through.

Bullying is wrong.  I wish we could end it without it ending in suicide.

The Never Ending “To Do” List

05 Tuesday Feb 2019

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When I retired a few months ago, I knew what I would be doing.  My ideal thoughts were to be traveling to far off lands and seeing the world.  That was never to have happened.  I knew that.  Be that as it may, my fate was already sealed.  Some may call it a ‘Honey Do” list but in actuality, it’s my list.  It’s a list of projects that only I can do or at least pay someone to come and do it. As a family with twins in college, we really can’t afford to pay someone to do something that I might do.  With the disability looming in the foreground, I have to be careful as to what I actually am able to do.  If that makes sense.,

The problem I have is that I start a project and before I finish the project, I start another one.  Now, after several months of being retired, I have several unfinished projects and I was getting stressed out about having all these unfinished projects about.  I think I have come up with a solution to my problem and so far it’s working.  I’ve come to the conclusion that if it’s cold or rainy outside, I can permit myself to do some woodworking projects.  That is if and only if I get the chores done.  If it’s pretty outside, I need to be doing some of these outdoor projects such as painting and yard work.

What I’ve started doing is creating a task list with all the projects that need to be done around the house.  I sit down and list them by importance.  I check the weather for the next day and add a couple of tasks to the calendar.  I don’t add another task until either that task is done or the weather changes and I can’t go outside and work on the project.

I had a fairly large limb come down a few months ago and for the last three days, I’ve worked trying to get it down. It’s down now but I’ve still got some clean up to do.  This weeks weather calls for a pretty good chance of rain each day so I’m having to work around that.  After that I’ve got the exterior doors to paint, sidewalks to clean, the deck needs pressure washed, hedges need to be trimmed, I think you get the jest of what all I need to get done at least outside the house.

 

 

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.

Making Sawdust

23 Wednesday Jan 2019

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I must admit since I got married, I have been collecting woodworking tools but I have never been able to find the time to work with them.  I guess my first tool was the table saw, then a few small power tools like a drill, a Skill saw, a Miter saw and the list goes on.  Right now I have so many cordless drills that I can’t keep the batteries up on all of them and they all die.  In fact, I just ordered two new batteries for one of my more heavy duty drills.

Most of my drills came from when I worked.  At first, the company would supply us with cordless drills but when I went to use one, either I couldn’t find one or when I did the batteries were dead because the last person who used it didn’t put it back on charge.  I soon started buying all my tools that way I could lock them all up and they would be there when I needed them.

Anyway, now that I’m retired, I’ve started working on some small projects that were either needed around the house or projects that I’ve seen that I think I could sell at some craft shows.  My first project was, of course, the picture frame.  When I first started making the frames, I just couldn’t get it right.  I was using my miter saw that I bought some twenty years ago, cutting on a forty five but when putting everything together, the last corner was nearly a quarter of an inch off.  I couldn’t figure it out.  I watched Youtube videos on the subject, I was doing everything right but no matter what I did, I was still a quarter inch off on the last corner.

A few years after moving in this house, my dad and I extended our deck on the back of the house.  My dad is a real craftsman.  I’m just an imitation compared to him.  My dad, in order to help with some of the cuts, bought a miter saw large enough to cut some of the six by six posts that were required to build my deck.  After having all the trouble with my cuts for my frame, I decided to do a couple of cuts using his saw, being that he never took his saw home.  I want you to know that that was the prettiest frame that I had made.  The forty-five’s fit nearly perfect.  I went back to my saw and realized that when cutting a forty-five, the blade was square at the fence but as it moves toward the outer edge, it was out at least one-sixteenth of an inch.  When you add all that up, that’s at least one-quarter of an inch out.  No way to fix the saw.  There’s no adjustment for that.  I know.  I took the saw to have someone look at it and there’s no way to fix this.  Luckily, I have my dads saw and the last time I talked to him, he’s given me this saw.

Now that I’ve got a saw that cuts a good forty-five, I started making frames, and a bunch of them too.  All shapes and sizes.  I use plexie glass and real glass.  I’ve even got my mat cutting equipment and different colored mats.  I have a driver tool to hold the picture in the back of the frame.  I have everything needed to make and sell picture frames. And I got bored.

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Next up, a paper towel holder.  Or a poor excuse for one.   The plans call for a jigsaw, which I have, to cut the pattern out.  But, for some reason, I keep burning the curves.  I have a jigsaw that has a scroll feature on it but I haven’t been able to master it yet.  I also have a router and I used a trim bit but it ended up tragically.  It was my first try and I’ll try again I get the nerve.  It was pretty scary, to say the least.  It was so bad that my son, who was helping me at the time, said “Dad? “I don’t think that was supposed to happen”   No crap!!.

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Next up, clothes hamper.  Made from recycled pallet wood.

Don’t look too much at the lid.  I am still working on it.  In fact, I’m still working on all of it.  I’ve spent the last few days sanding on it.  If I had known that my wife wanted it sanded and stained, I would have done the sanding on my bench sander before nailing it all together.  Oh well, It’s giving me something to do.  If everything works according to plan, I should finish sanding tomorrow and start the staining process.

I look at sites such as Esty.com and see some of the prices these people want for items such as this and I think they must be crazy for asking for such an outrageous price.  But, going through everything that I’ve done just to get this far, I’ll have to say that they should be asking for more.  According to Esty, the picture frame should go for $35, the paper towel holder $75 and the clothes hamper $175.  Do I think I’ll get that much?  Probably not.

I’ll up date on both, the clothes hamper and the paper towel holder when they’re finished.  I think my next project will be a much needed foil rack for one of the cabinets.

Life Goes On.

Filing for Disablility

23 Wednesday Jan 2019

Posted by in Disability, Photography

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Yes, I’ve filed for disability.  Let me tell you, so far, it’s been one hell of a ride.  First of all, they tell you to go online, print out the paperwork, fill it out and send it in.  I did that, and while I was getting the information,(doctor’s notes, procedures, diagnosis’) I found out that you can also fill all the paperwork online then submit it once you have it completed.  Of course, I had most of the information filled out before I knew I could do it online.  Once I completed the paperwork online, I hit the submit button and off it went.

Several weeks go by and I get a phone call stating that they had received the paperwork and they, in turn, had sent it to the appropriate people.  I thought I had already done that.  Oh well.

Another week or so goes by and I get a letter in the mail telling me that I’ve got to go see one of their doctors.  I was expecting this.  I had to send the letter back to them stating that I was to keep the appointment.  The week before the appointment I got another reminder about the appointment.

The doctor was a psychiatrist.  I had to see him because of the memory issues I guess.  He asked a lot of questions regarding my health, my daily routine and of course, my memory.  After about thirty minutes or so he was done.  Now the waiting continues.  Oh I know this could take years before I hear anything and it will probably end up being denied.  I understand that.  Of course, I willl apeal it.

Life goes on.

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.