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Author Archives: Tim Hughes Living with CML

365 Day Photo Challenge 211/365 “And It Continues”

29 Wednesday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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365 Photo Challenge, Aggravated, Alabama, Automotive Woes, Birmingham, Photography, Tow Truck, Truck Repair

https://tchphotography.smugmug.com/Birmingham/i-H3RHVmb/A

Friday needs to get here quick because I can’t handle another day like I’ve had the past two.  Today, while on my way home from work, I stopped to get gas.  When I got ready to leave the gas station I put the truck in drive and nothing happend.  It seems that the gear shift cable broke.  I had to have my truck towed to a shop near my house.  It’s not a very expensive fix, about $300.00, but it could be worse I guess.

“Life Goes On!”

365 Day Photo Challenge 210/365 “Is is Friday Yet?”

28 Tuesday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Co Worker, Photography

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This is only Tuesday and it feels like it needs to be Friday.  I’ve been so busy with work and every time I have plans afterwards something always comes up.  I might as well wear a sign telling everyone that I have plans and please do something stupid to keep me at work and away from my plans.  Maybe tomorrow will be a better day.

“Life Goes On!”

365 Day Photo Challenge 209/365 “Hot Spots”

27 Monday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Adjustments, Cleats, Cycling, Hot Spots, Look Pedals

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I’m hoping that it’s just an adjustment but during this Saturday’s ride I had some issues with both my feet getting hotspots near the ball of the foot.  These are new pedals and new cleats.  I had a similar problem with my old shoes but just on my right foot.  I was told that the reason that I was having hot spots was because I was using the wrong pedals with the wrong cleats, so I changed.

I started having discomfort about 12 miles into the ride.  I decided that I’d wait until I got to the first rest stop to see if I could adjust the cleats.  When I arrived I stepped off the bike into a mud bogg.  I retrieved the allen wrench from my pouch and dug out the mud surrounding the screws on my left shoe.  I adjusted the cleat and tightened the screws down.  I set the wrench down to remove the sweat that was pouring from my forehead and onto my glasses and when I went to grab the wrench I couldn’t find it.  I searched for a few minutes and then gave up.  It was like trying to find a needle in a hay stack.  I was mad at myself for losing it and really couldn’t see how I lost it in the first place.  I road the 14 miles back with the last two miles having the same discomfort that I had before the rest stop.

I’ve watched a couple of youtube video’s on how to adjust the cleats but some of the comments that I’ve read on each video has me questioning their method.  I guess a phone call to the bike shop should be in order.  I may give them a call tomorrow.

“Life Goes On!”

365 Day Photo Challenge 208/365 “Busy Weekend, Hating Mondays”

26 Sunday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Apartment, College, Cycling, Hot Hundred, Monday, Moving, Photography, Studio

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I really loathe Mondays especially since I had a busy weekend.  I did some things that I really enjoyed doing such as the bike ride but not being able to spend any time with my kids because their at work, well I have a problem with that.  I guess I’ll have to get used to it since they are old enough to work.

I got my son moved from one apartment to another today.  He’s moved into a one bedroom studio. He has a separate bathroom, a separate kitchen but the rest is open.  It looks really weird to see this sort of set up but I guess once you think about it what more do you need?  It’s a short term lease so he’ll be out in December and back home with us until he actually finds a job and moves out.

I’ve look through over a thousand pictures people have posted and this is the only picture that I’ve seen with me in it.  I’m the one on the far left with the bright yellow shirt.  It looks like I’m about to turn the wrong way.  I promise you I didn’t because I got the t shirt to prove it.

“Life Goes On!”

365 Day Photo Challenge 207/365 “Hot Hundred”

25 Saturday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Bike Ride, Cycling, Hot Hundred, Humid, Photography

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They picked the perfect name for this ride because it was truly a very hot day today.  The ride started at 7am sharp.  I arrived a little later than I had wanted too so I was toward the back of the pack when the ride started.  It didn’t take me long before I was riding with the lead riders.  Not for long though.  It was a fairly flat ride but my feet started giving me some problems because I don’t have the clets set up just right.  I will soon enough thogh.

All the ones that preregistered got a goody bag which included your bib ID plus all you see in this photo plus a tee shirt.  Not bad.

The ride started off pretty slow.  I guess 700 riders leaving out all at once can’t be too quick.  Once I made it toward the head of the pack I was able to reach speeds of around 19 and 20 mph.  It was constant peddling though.  No hills to go down only a few to go up toward the end of the ride.  The ride was rough as the roads are were in poor condition in places.  I ended up having a lose spoke just before the first rest stop.  I didn’t have my spoke wrench so I had to listen to it all the way back to the start/finish line.  I’ll fix that problem tomorrow after I get home from moving my son.

“Life Goes On”

365 Day Photo Challenge 206/365 “I’m ready”

24 Friday Jul 2015

Posted by Tim Hughes Living with CML in Photography

≈ 3 Comments

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365 Day Photo Challenge, Bike Riding, Cycling, Hot Hundred, Photography

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I took the time to give my bike a bath this afternoon.  I have a bike ride tomorrow morning so I decided that I’d clean her up a bit.  Once I got everything put back together I went ahead and got everything I’ll need together so I won’t be in a panic in the morning when I get out of bed. I’ll be leaving the house around 5:30 in the morning so I can pick up my ride packet. I’ll be riding 29 miles which isn’t much but that will get me home in time to grill some steaks that my son wants for his birthday dinner.

“Life Goes On!”

365 Day Photo Challenge 205/365 “Happy Birthday!!”

23 Thursday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Family, Happy Birthday, Photography, Son

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Happy Birthday to my oldest and only son today.  22 years old.

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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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 203/365 “Health Insurance; Love it/Hate it”

21 Tuesday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Cancer, CML, Copay, CPAP, Deductible, Drugs, Gleevec, health, Insurance, Medications, Photography

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Health Insurance can be a love/hate relationship.  I am fortunate to work for an insurance company and I get my insurance at a discounted rate but it’s still very expensive. I still have copays and I still have deductibles that I have to meet before the insurance will pick up.  I fill sorry for those that have to fork out thousands of dollars each year for insurance.

Today I had to go pick up my new CPAP machine.  When the lady called me to tell me that I now qualified for a new machine I asked her how much I owed.  She checked her computer and said that my deductible had not been met and that my payment would be around $500.00.  I don’t have $500.00 to spend right now and told her that.

I have CML, a rare form of Leukemia.  My medication is very expensive.  It averages out to be around $600.00/pill.  I take one pill a day and my prescription is for a thirty day supply.  My insurance out-of-pocket yearly deductible is $2500.00 and my prescription costs $18,000.00 a month.  That means that I would have to pay $2500.00 for the first month and the insurance company would pay the remainder.  But first, and the most important thing is that I would have to come up with $2500.00 before I could get my first prescription.  Pocket change, right?  Not for me.  Who has $2500 just laying around?  Again, not me.

A little known fact is that some drug companies want you to take their drug.  So much so that they are willing to pay you to take it.  I am very fortunate to be on such a drug.  Gleevec is the manufacture of the drug that I’m on and they offer a financial assistance program to those that can’t afford the ridiculous prices of the medications. I first read about this on their website once I found out that I would be taking the drug.  At first I thought that it was only for those that didn’t have insurance but thankfully I was wrong.  I called them up and they paid all but $100.00 of the $2500.00 of my out-of-pocket deductible.  Wonderful news!!  I pay the pharmacy $100.00 at the beginning of the year and Gleevec pays the rest and I don’t pay a dime the rest of the year for this drug. That’s not the only good news that came out of this.  Remember the CPAP?  It seems that my CPAP was covered under the same plan.  Being that my deductible was indeed met I walked out with a new CPAP and a new mask for $00.00.

“Life Goes On!”

365 Day Photo Challenge 202/365 “The Heat is Unbearable”

20 Monday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Cycling, Heat, Helicopter, Humidity, Navy

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As much as I hate the winter months I will never complain about the summer.  Although the last few days just have been really hot.  Yesterday I rode my bicycle and the heat index was around 110 degrees.  It really wasn’t that bad as long as I didn’t stop for too long.  Today the heat was just as bad.  Supposedly there will be some relief toward the end of the week.

Didn’t ride this evening like I wanted too but I did stick with my diet.

“Life Goes On!”

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