Happy Birthday to my oldest and only son today. 22 years old.
365 Day Photo Challenge 205/365 “Happy Birthday!!”
23 Thursday Jul 2015
Posted in Photography
Author Archives: Tim Hughes Living with CML
365 Day Photo Challenge 204/365 “Stay Off the Internet!!”
22 Wednesday Jul 2015
Posted in Photography
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 203/365 “Health Insurance; Love it/Hate it”
21 Tuesday Jul 2015
Posted in Photography
Tags
365 Day Photo Challenge, Cancer, CML, Copay, CPAP, Deductible, Drugs, Gleevec, health, Insurance, Medications, Photography
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 in Photography
Tags
365 Day Photo Challenge, Alabama, Cycling, Heat, Helicopter, Humidity, Navy
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!”
365 Day Photo Challenge 201/365 “Caution! Work Week Ahead!”
19 Sunday Jul 2015
Posted in Photography
Tomorrow’s Monday. It was inevitable but I’m really not prepared for it to arrive so soon. It’s going to take me working eight weeks straight without taking off, excluding weekends, to make up for one week of vacation. Doesn’t seem quite fair does it? The way I look at it, the time I spent with my kids will be well worth the time that I’m going to have to work to recoup my time.
My vacation is officially over with and I’m already looking forward to next year when we will be going on my daughter’s senior trip. It’s in the works and now that this years vacation is over with we can start getting serious with the planning.
On another note; I was able to ride a little over 25 miles this morning. I was able to control my eating somewhat and hopefully I’ll be able to continue into next week.
“Life Goes On!”
365 Day Photo Challenge 200/365 “Time to Get Serious”
18 Saturday Jul 2015
Posted in Photography
It’s been said before but I’ve got to get serious with my weight loss. My son graduates college in December and I have promised myself that I would be at least 25 pounds lighter, more if possible. As with most people who diet all the time, I have the want to but the will power is a bit lacking. I’ve already instructed my wife that I will be eating more healthy including more salads and less sweets. It starts tomorrow. I’ll post updates from time to time.
“Life Goes On!”
365 Day Photo Challenge 199/365 “Home and Tired”
17 Friday Jul 2015
Posted in Photography
I got out of bed and looked out the window to see a peaceful ocean this morning. The past few mornings the waves had been breaking as far out as far as the eye could see but today not so.
Kids wanted to do some shopping so instead of wasting valuable beach time I told them we could go on our way home today. For two hours I sat on an outside bench while my wife and kids went shopping at the outlet mall. I didn’t mind one bit. I sat there a did what I like the most which is people watch. Believe me, there were a lot of people to watch.
We arrived home to find two very angry cats. They didn’t appreciate us leaving them to fend for themselves. We always leave plenty of food and water for them while we’re gone. We also allow my sister in law to come and check on them at least once a day but they always manage to get mad and leave “gifts.” The female quickly got over it but the male still hasn’t come to terms with us being home just yet. Come morning he’ll be ok.
365 Day Photo Challenge 198/365 “Not Ready to go Home!”
16 Thursday Jul 2015
Posted in Photography
Tags
365 Day Photo Challenge, Beach, Florida, HDR, Ocean, Photography, Sunset, Vacation, Waves
Vacations are never long enough. Even though we had two full days at the beach I could’ve used another week at the least. Everyone had a great time and we had great weather. The waves were a bit rough but that didn’t keep us out of the ocean. I was able to get to the front row this morning. I had to get up early to do so but I was there when they set out the beach chairs.
Kids are wanting to do some shopping before we actually set the gears in motion toward home. It’s a five hour trip so I’m in no real big hurry to get home. The girls will have to go into work Saturday morning and my wife and I will be moving our son out of one apartment and into another so Saturday will be a busy day for everyone. Sunday will be my rest day before having to start my work week on Monday. To be honest, I am not ready to go back into that Hell hole.
“Life Goes On!”
365 Day Photo Challenge 197/365 “Putting it in Perspective”
15 Wednesday Jul 2015
Posted in Photography
Tags
365 Day Photo Challenge, Beach Chairs, Beach Time, Destin, Family, Florida's Beaches, Ocean, Seagrove, Vacation
The place we’re in is not near as nice as the place we stayed in the past few years. The beaches have a lot more people and you have no where to have a clean view of the beach without having to look over the people in front of you. There are rude kids everywhere throwing sand and running into you. There was a family of five kids just in front of us that had their radio jamming where everyone within a five mile radius could hear it. The five kids all played paddle ball just in front of us and my son got hit several time with their wild hits. The umbrella that they used was tossed in the air by the winds and I nearly got impaled through the chest. At the days end I was not a happy camper. I was ready to go home. Not to the room but home. I had enough.
I wanted to get to the beach earlier but my wife, who by the way knows everything, informed me that the chairs would not be available until 9am, (our room has complimentary beach chairs). I was not going to argue with her. In a perfect world the chairs would be waiting for us at 9am but we don’t live in a perfect world. I looked down and saw all the people heading to the beach before 8am and I knew what was going on. Of course, I arrive at 8:30 to find that all the front row chairs were already spoken for leaving only the second row. I put my belongings down next to an empty chair and sat in the other waiting on my wife to arrive. When she did her first words were, “Why are you sitting back here when all these chairs are empty on the front??” I politely informed her that those are already spoken for and that we should have gotten down there earlier. She hates being told that she’s wrong.
To put things in perspective. The place may not be as nice and it may be more crowded than the other place but we are here at the beach and I’m on vacation. I had to bite my tongue several times today because I didn’t want to add to an already bad situation. Our family has had several bad experiences and of course I’ve made it worse by saying something when I should’ve just kept my mouth shut. So, I’m trying to exercise some knowledge that I’ve gained over the years. The safety of my family is first and foremost on my mind. I will say something when I feel that the wellbeing of my family is involved. Otherwise I will just grin and bearing it.
Tomorrow is our last full day down here at the beach. My plan is to get to the beach early enough to sit my big fat butt on one of the front row benches and reserve one for my wife and I. Hopefully the family of five kids will be on the other end of us and I won’t have to worry about being impaled by an umbrella.
“Life is Good!”
365 Day Photo Challenge 196/365 “Weve Made It”
14 Tuesday Jul 2015
Posted in Photography
They say that a bad day of fishing is better than a good day at work. Same thing with vacations. Miscommunication led to unneeded arguments and I’ll tempers. We are here after a huge delay but nonetheless we are here.
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