Living With CML To Be Or Not To Be

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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

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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

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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

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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

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”

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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

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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

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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!

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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.