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

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Tag Archives: Leukemia

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.

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

https://tchphotography.smugmug.com/Botanical-Gardens/i-ZK8ZW7w/A

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 337/365 “Renewed Friendships”

02 Wednesday Dec 2015

Posted by Tim Hughes Living with CML in Photography

≈ 2 Comments

Tags

365 Day Photo Challenge, Alabama, Cancer, Friendship, Leukemia, Oncologist, Travel

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After my appointment with my oncologist I spent some time renewing an old friendship with a young lady from my past.  I had seen that she was in town for a few days and I called her up to see if she wanted to meet for some coffee.  She was elated to hear from me.  We met at a local coffee shop where we talked for over two hours.  I drank so much coffee I think it will be sometime next week before I get any sleep.

It’s amazing how time gets away from you.  I had no idea that it had been ten years since I’d seen her.  We had so much to talk about but so little time to catch up.  She had to hurry on to catch a flight back to where she’s now living.  It was really good to be able to spend what little time I had with her today.  I’m hoping that it won’t be another ten years before I get a chance to see her again.

“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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Tags

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!”

 

365 Day Photo Challenge 322/365 “Day 17”

17 Tuesday Nov 2015

Posted by Tim Hughes Living with CML in Photography

≈ 5 Comments

Tags

365 Day Photo Challenge, Cancer, CML, Exercise, Leukemia, treadmill, weight gain, Weightloss

https://tchphotography.smugmug.com/Botanical-Gardens/i-GdvLpxK/A

Have you ever have one of those days where you just wanted to go back to bed and crawl under the covers and hide from the world hoping that no one would find you?  Today was one of those days for me.

It started when I got on the scales this morning.  Another 2 pounds gained.  It’s tough seeing weight that you’ve already lost appear back on the scale.  Where’s the encouragement to keep going if all you do is see is weight added back to the scale even making sure that you’ve stuck to your exercise program and your diet.  Oh well, I’m going to keep going.  Don’t really have a choice but to keep going.

What really made me want to hide from the world was the phone call I got from my oncologist this morning.  If you’ve been following this blog long you will remember that I’ve got CML, a form of Leukemia.  When I was first diagnosed my blood levels were at 133%.  Six months ago at my last appointment my blood levels were down to .05%.  A very good report indeed.  Not today however, my levels went up to .65%.  I go back to my oncologist in two weeks for more blood work then after that blood work comes back the doctor will make his decision as to what my next step will be.

“Life Goes On!”

365 Day Photo Challenge 273/365 “Half Day Tomorrow”

29 Tuesday Sep 2015

Posted by Tim Hughes Living with CML in Photography

≈ 3 Comments

Tags

365 Day Photo Challenge, Appointment, Cancer, Cats, CML, Diabeties, Doctor, Leukemia, PTO

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I have a doctors appointment tomorrow with my general practitioner.  I see him every six months and have been every since I’ve been diagnosed with Diabetes.   If you don’t have a regular doctor I would highly suggest that you get one.  If it wasn’t for my biannual checkups my CML would not have been diagnosed until it was too late.

I’ve got to talk to him about several items that I’m having problems with so it might be a longer visit than normal.  I will not be going back to work after my appointment.  I’m sort of looking forward to a little time off.

365 Day Photo Challenge 204/365 “Stay Off the Internet!!”

22 Wednesday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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Tags

365 Day Photo Challenge, AML, Bone Marrow Biopsy, Bone Marrow Transplant, Cancer, CML, Leukemia, Photography

https://tchphotography.smugmug.com/Botanical-Gardens/i-M8vWhDb/A

When I was diagnosed with CML, my doctor told me to stay off the internet.  What he meant was don’t do any research on my own because if I did I might get upset at what I found.  He was right.  I did my research and I did find some information that made me concerned.  That’s all in the past now.  My doctor and I are on the same page and we’ve discussed everything there is to know about CML including what could happen if I skipped or stopped taking my meds,  if the drug I’m on decides to quit working or if the cancer decides to take a different route.  I have complete faith in my doctor and I trust him implicitly.

I have the Chronic form of this type of Leukemia.  There are other, more advance forms that are more difficult to control.  Acute Myeloid Leukemia is of course the most difficult form to get under control and often times means a bone marrow transplant, chemotherapy and sometimes even death.  In fact, there is a survival rate of 65% of all AML patients.  Which is not bad considering that just about 15 years ago the survival rate on only about 2%.

Age has a lot to do with being able to survive the processes of reaching remission.  Having to go through a bone marrow transplant plus going through chemo is something that takes a lot out of the body.  The information that I read today stated that people older than 60 years of age the chances of them reaching complete remission (CR) are not very good.  For people who are diagnosed after the age 60 usually are given three to five years even if they decide to go through the bone marrow transplant and the chemo.  Not very promising.

I brought this up because yesterday while on my way home from work I got a phone call from a friend of mine.  Her ex husband’s mother who is 86 years of age was diagnosed yesterday with AML. They have done a bone marrow biopsy and the diagnosis is confirmed.  Her MIL has decided not to receive any form of treatments.  The doctors have given her two to three months to live.

When I was first diagnosed with CML I was told by many of my nurse friends that if someone had a choice as to which form of Leukemia to get, you would want the Chronic form.  After hearing the news of my friends MIL diagnosis I feel blessed to have the Chronic form.  I would rather not have cancer at all but I do and I have to deal with it the best way I know how.

“Life Goes On!”

365 Day Photo Challenge 168/365 “New Beginnings”

16 Tuesday Jun 2015

Posted by Tim Hughes Living with CML in Photography

≈ 2 Comments

Tags

365 Day Photo Challenge, Alabama, Cancer, CML, Leukemia, Life, Photography

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It’s amazing how one minute life is as usual and then the next life turns upside down and you don’t know which way to turn.  Life should be as a highway with road signs that tells you that there is a turn up ahead or the speed limit changes that way there would be at least a warning that your life is about to be turned upside down.

I’m not one to give advice on such matters because each scenario would be different for each person and each person would handle the situation in different ways.  To have a new beginning would be hard to do no matter what you’re going through.

“Life Goes On!”

365 Day Photo Challenge 49/365 “Running Out of Time”

18 Wednesday Feb 2015

Posted by Tim Hughes Living with CML in Photography

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Tags

365 Day Photo Challenge, Alabama, Cancer, CML, Dana Micael, Leukemia, Sick

http://tchphotography.smugmug.com/Photo-Shoots/Dana-Micael/i-wWCw9tQ/A

I’ve been sick since Sunday and so far I’ve missed two days of work.  I’ll be taking off again tomorrow to go back to the doctor to see if I can get another shot to hopefully finally get rid of this mess.  I’ve been sick more since I’ve been diagnosed with CML than in the past several years combined.  The doctor did say that my immune system will be low but I wasn’t really prepared for all the time off that I’ve had to take so far.

“Life Goes On”

365 Day Photo Challenge 44/365 “Night Out on the Town”

14 Saturday Feb 2015

Posted by Tim Hughes Living with CML in Photography

≈ Leave a comment

Tags

365 Day Photo Challenge, Alabama, Aniversery, Cancer, CML, Gymnastic, Leukemia, Pep Band, Photo, Photography

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Went to Tuscaloosa tonight to the Gymnastics meet and also spent a few minutes with my son who played in the pep band.  Please forgive the picture as I was way up in the stands with my 70-300mm zoom lense.  Our team one which is always a good thing.

Today marks the one year anniversary since my diagnosis of CML.  I’ve got an appointment to see my oncologist in just a little over a month.  I’m still waiting on the test results that state there are no traces of the cancer in my blood.  That day will come soon enough I hope.

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