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Category Archives: Family

There’s Always Something

29 Monday Jun 2020

Posted by Tim Hughes Living with CML in Depression, Family, Retirement, Twins

≈ 2 Comments

Tags

College, Job, Work

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I know it’s been a while since I’ve posted anything but I’ve been doing other things and I haven’t taken the time to post.  To be honest I’ve been rather depressed as of late.  The fact that I’m not working anywhere and not able to keep my mind off of things makes it difficult to not get depressed.

Both my daughters graduated in May and here it is the end of June and neither one has any job offers on the table.  One of my daughters has a teaching degree and has had a couple of interviews but no one wants to hire her.  The other has some sort of advertising degree and she’s got several applications in but hasn’t had any interviews yet.  They have six months to get a job to start paying their loans back.  My son went through the same thing and we were prepared to help him with paying back his loans but as luck would have it, he got a job right at the end.  Now we have two that we’d have to help and right now there is no way we can help.  We just can’t afford it.  I guess, if worse comes to worst, we could get some kind of load to help but I don’t want to get back in debt again.

The sight of my daughter getting so excited to get an interview and then wait for a phone call that never comes is more that I can handle.  She says she’s alright but I know just how disappointed she is and I’m disappointed for her.  What makes this thing a little worse is that she does have a part-time job working at the YMCA.  The thing is that they’ve hired too many people and now only works every other week so she’s not making the money she was promised. At least my other daughter is working, at least until the end of July until she has to move out of her apartment and then she will be out of a job.

I guess it’s all part of parenting. There’s a lot more I’d rather do as a parent than to watch them struggle.  My son, who I was worried about when he graduated, now has a job making nearly twice as much as I did when I worked thirty-two years and he’s only worked for about four.  Go figure.  Maybe my girls will end up doing the same thing.  I pray they will.

 

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Life Has its Ups and Downs.

09 Sunday Feb 2020

Posted by Tim Hughes Living with CML in diet, Disability, Family, Retirement, Weight Loss

≈ 1 Comment

Tags

diet, Rain, Stress, Weather, Weighloss

 

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A shelf I built for the kitchen but ended up in the garage

Life has been so stressful lately and I guess I eat more when I’m stressed.  I thought when I retired my life would be less stressful but lately, it hasn’t been the case. I’ve tried to stay on my diet but that hasn’t worked out so well.  The good news is that I’m back on it and I’ve already lost six pounds.  I’ve set mini goals and I’m about four pounds before I reach my first ten-pound mini-goal.  My twin daughters will be graduating from college in May.  They want to go on a cruise in June so this has given me an incentive to lose about twenty pounds before the trip.  I really hope I can do it.

As I’ve stated last time I wrote, I had applied for Social Security disability.  I had my hearing and I got a favorable decision.  I’m still waiting on my backpay as well as my first check.  This whole process has me concerned somewhat.  I’m not surer If I can explain it or not but it makes me feel inferior or worthless.  I’ve worked all my life and over thirty-two years at my last job, not they’re telling me that I can’t work.  I feel like I can do something but I’ve got to be honest with myself, I do have trouble breathing when I do anything.  No one will hire me at my age with all the issues that I have.  So I guess I’ll just have to get over it.

The last two days have been dry and I’m glad it has because the few days before that it rained at least four inches in less than two days.  The next four days we’re supposed to get at between six and seven more inches.  There will be a lot of flooding and trees down.  Let’s hope that the severe weather that is projected for Wednesday is not too bad.

Tomorrow will be a hard day for me.  One of my friends worked for Kimberly Police department and was shot and killed the other day while on duty.  He will be buried tomorrow.  If you’re a praying person please pray for Nick O’Rear’s family.

Living With CML To Be Or Not To Be

03 Thursday Oct 2019

Posted by Tim Hughes Living with CML in Cancer, Disability, Family, Leukemia, Photography

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Tags

Bone Marrow Transplant, Cancer, Chronic Myeloid Leukemia, CML, Disability, Oncologist, Tests

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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.

 

 

 

Living with CML

17 Wednesday Jul 2019

Posted by Tim Hughes Living with CML in Cancer, Family, Leukemia

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Tags

BMT, Cancer, CML, Hospital, Leukemia, Worry

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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.

Long Overdue

10 Thursday Jan 2019

Posted by Tim Hughes Living with CML in Cancer, Family, Leukemia, Pets, Photography, Retirement

≈ 3 Comments

Tags

Bird, Cancer, Chores, Dentist, Feeder, health, Photography, Retirement, Ulcers

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It’s been since September since I’ve posted anything so I figured I’d do a little update on what’s been going on. First of all, I went to the dentist today and had some work done and I had to take a prescription pain pill to take care of the pain that I was in.  So, if this doesn’t make sense, that’s why. As stated in my last post, I’ve retired.  I can’t begin to tell you how happy I am about that. I get updates from one of my co-workers every once in a while and let me tell you when I get off the phone with him, it makes me so happy to think that I no longer work at that place.  The management at that place has taken a turn for the worse and it seems that I left just at the right time.  The stress that I felt while I was there is no more.  That within itself is worth retiring over.

So, what is my plan since retiring?  I’ve got several irons in the fire, none of which requires getting up and going to a regular job.  I was blessed with an excellent pension and my 401k didn’t look bad at all either.  I made an appointment before retiring with a financial planner and he told me that I had nothing to worry about.  In fact, I got a little raise since retiring so I think we’re going to do just fine.

On most occasions, I get up with my wife when she gets up to get ready to go to work.  I usually sit and talk with her while she’s eating breakfast.  After she leaves, I usually take a shower and go to the garage and work on some woodworking projects.  I take care of the laundry and try to have dinner cooking when my wife gets home from work.

Other things such as setting up my camera so that it can take pictures of the bird feeder have been another little project that I’ve been working on.  It’s the simple things in life that make it interesting.  My cats and I enjoy watching the birds in the morning while we’re sitting in the kitchen spending time with the wife while she’s eating breakfast.

On another note and this will be the last of this update for now.  My cancer numbers are starting to look pretty good but on the other side of that coin, my iron levels have started to plummet.  I’ve had to do two iron transfusions and had to have a colonoscopy and an endoscopy to find out where I’m bleeding out.  Ulcers, I’ve got two bleeding ulcers.  Another pill to add to my pharmacy list.

Thanks for taking the time to read and I’ll post again soon.

Stressful Week

28 Friday Sep 2018

Posted by Tim Hughes Living with CML in Family, Photography, Retirement

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Tags

Apartment, Employment, Family, Furnature, Moving

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This has been such a stressful week for me.  It started with one of my daughters getting sick at school and having to go pick her up and take her to the doctor.  The school is an hour away so when I left at 3 pm that meant that I didn’t get home until 10 pm.  That’s picking her up at school, driving her to the doctor, driving her home to eat supper then me taking her back to school and me driving back home afterward.

The next event was having to hunt for my son’s W2.  He got a new job and was supposed to have started last Monday but things kept popping up.  They finally told him that he needed a W2 for the years 2012 and 2013.  After tearing our house apart, I found the 2013 W2 but the 2012 W2 is still elusive. My son went to the IRS website and he found his 2012 W2 but it was missing some information and therefore was rejected by the people doing the background checks.  Eventually, they compared the 2013 and the 2012 W2’s and realized that both had the information needed to confirm employment for these two years.  He starts Monday with his new job.  During all this, I was trying to finalize the paperwork for disability.

Today and tomorrow my son moves into a new apartment.  He has purchased a coffee table and a kitchen table that he had stored here.  The coffee table needed some work so I’ve been repairing, sanding and repainting.  This afternoon, my son came over and we loaded the tables up on my trailer and delivered them to his new apartment.  At least that’s two items that he doesn’t have to worry about tomorrow when the movers come. Hopefully, this move won’t take all day.

Sunday, we’ll be making a trip to visit my parents.  They live about an hour away so Sunday will be another long day.  I didn’t think being retired I would be this busy.  I’m looking forward to next Monday when things finally slow back down.  At least I hope.

Today’s Thoughts 3/25/2018

25 Sunday Mar 2018

Posted by Tim Hughes Living with CML in Family, Leukemia, Photography

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Tags

Aerial, Backyard, Easter, Good Friday, Weekend, Work Week, Yardwork

Hello everyone!!  I hope everyone had a great weekend and is looking forward to going back to work.  Me?  I had a great weekend but I am not looking forward to going back to work tomorrow.  I guess most of are not.

My wife is off all week next week for spring break.  I’d like to take off with her but I’m trying to save my time just in case I have to go back to the hospital.  If I have time I’ll take two weeks either in June or July to go on vacation with my family.  I could save my time and just get paid for it when I retire but my kids would be able to get out of school in August when I do retire.

This weekend was spent in my backyard doing some pruning.  I’ve let my backyard go for several years because simply I haven’t felt like doing any type of yard work.  So now I’m paying for it.  Shrubs have grown into trees so I’m back there with an electric chainsaw cutting everything down and dragging it to the street.  The chainsaw is only good for about two hours and as luck would have it, that’s about how long I can last without taking some sort of a break.  I got a lot done this weekend but I’ve still got a lot more to do.  Here’s an aerial view of my backyard.  Too bad I don’t have a before picture so you can see what I’ve done.

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There’s an area just to the right and behind the white truck that I’ve cleaned out and to the right and behind the large bush directly behind the deck. I’ve cut down the large bush after this picture was taken.  The brush people will not be happy with me when they come and pick up the pile.  It’s enormous.

I hope everyone has a great week ahead.  I’m only working four days.  I’m off Good Friday.  All my kids are coming home so I’m planning on doing something with them on Saturday.  Sunday we’re spending it with my wife’s parents.  Lovely. (Insert sarcasm here)

My meds never came this weekend.  I guess a call to my oncologist will be in order for tomorrow.

🙂

A Few Thoughts and Other Entanglements

18 Sunday Mar 2018

Posted by Tim Hughes Living with CML in Family, Photography

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Tags

Baseball, City, Drone, Footage, Football, Parks, School, Soccer, Track, Video, Wondershare

As I sit here tonight, they are predicting severe weather for tomorrow evening.  The biggest threat is north Alabama but they include large hail, strong winds, and a few strong tornados.  I can handle the severe thunderstorms but tornados is another thing.  I’m still not over the tornado outbreak of 2011 that wiped out nearly half of our town and killed eleven people in our community.

What I’m also doing is putting together a few videos that I’ve created.  Most of which have been taken to try and boost the city’s morale. We have several city FaceBook pages and each one of them consist of negativity about our community.  We lost a lot of homes and families right after the tornado.  With these homes destroyed, many of which were never rebuilt and the families moved out.  With that said, we lost a lot of tax money.  Our city doesn’t have the money for a lot of the upkeep and people are complaining about the trash, businesses closing, and crime.  What I’m trying to do is post these videos on these pages showing what we have to be proud of; A nice athletic complex, a nice school, a storm shelter, etc.

During the tornado of 2011, we thought we had lost the brand new school.  Some kids and I were on a bus with the band heading to Orlando for a school trip when the tornado hit.  There were all sorts of rumors that told of the school burning, people lying on the ground dead and many other stories.  Most of which were true but the school did not catch on fire.

The tornado hit about a half a mile from the school and the athletic complex.  Like I said, a lot of rumors floated around and we were happy that we didn’t lose either of these landmarks.  My house was also spared thankfully.  The athletic complex is one of the jewels of our community.  Between the complex and our park (I don’t have a video of it as of yet), the kids of our community wouldn’t have a place to go and play.  My kids were fortunate to be able to spend a great deal of time at the park and they couldn’t wait to go and play in the creek.

I think we take for granted these places that our city has supplied for us. We always focus on the negativity instead of the positive.  I’m really hoping these storms that are predicted for tomorrow will pass us by. I’m really hoping!!  I’ll let you guys know how we faired tomorrow night.

3/16/2018 Oncologist Update

18 Sunday Mar 2018

Posted by Tim Hughes Living with CML in Cancer, Family, Leukemia, Photography

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Tags

Bosulif, Cancer, CML, Doctor, Drug Card, Drugs, Family, Insurance, Medication, Prayers, Test

Oncologist Update: Because of some miscommunications with the insurance company, go figure, I have not been approved to be on my new medicine yet. I may end up walking the paperwork to the department myself if they keep losing it. Anyway, it’s been six weeks or more since I’ve had any CML meds and we, more so me than the doctor it seems, are starting to get a little concerned that my numbers might get a little high. If the insurance company approves the meds, it could take up to three weeks before my meds arrive. Nothing to do but wait. But, as luck would have it, the representative for the new drug was there in his office. He gave my doctor a card for a free 30 day supply which should arrive by Tuesday of next week. This should give my insurance company time to process my approval for this drug.

Bloodwork. It’s been six weeks since my last lab. My last one wasn’t good at all. Every one of my numbers was either very high or very low. Yesterday’s numbers were normal for the most part. This was in large part the effect of the drug I was on. The side effects just made my daily life impossible to deal with.

New Drug: Bosulif is the name of the new drug. Right now I’ve been on two of the most common and there are only a few left that is approved by the FDA. Thanks to Karen Davis-Hudson she eased my mind about some of the side effects that were mentioned in the insert. However, Karen, I think you mentioned that 1/10 developed fluid retention, my doctor said 4/10. Not that much of a difference. The other side effects I think I can handle.

The Good News: The doctor and I both agree that the fluid in my lungs is gone and we’re going to have a positive attitude that it will not return and that this medicine will be the last one I have to be on because this one will work. I can breathe, my color is back and most importantly, I feel good. So much so, that if the weather holds, I’m going to try to get my bicycle out one day this weekend.

This is all due to all the prayers that have been lifted up for me and my family. Thank you so much.

2018 Pinewood Derby

12 Monday Mar 2018

Posted by Tim Hughes Living with CML in Family, Photography

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Tags

Boy Scouts of America, Cub Scouts, Drone, Family, Pinewood Derby, Race, Son

I remember going to these things when my boy was in cub scouts. I would always end up working on the car because he would never do it the way I wanted him to do it.  We had fun working together anyway.  It was a good time for us.  He was at the, what I would like to call, the fun age.  We would always find something to do together.  He loved the scouts as did I.  This gave us a wonderful opportunity to be together plus it gave him an opportunity for him to be around kids his own age.  I really miss those days.  He’s grown now, moved out of the house not long ago and into an apartment not far from here.

Boy Scouts has changed somewhat since I was a boy scout those many years ago.  One thing that hasn’t changed is the program and what they have to offer.  You may not like what’s happened within the past few years, neither do I in some aspects but there’s one thing they still offer, and that’s a program that keeps the boys out of trouble and in doing so they have the opportunity to learn something.

I digress.  This article was supposed to be about the Pinewood Derby which was held yesterday.  Eighteen cars were entered from all over our district.  Nearly all the boys won some sort of trophy.  They had to win their division just be able to race their car in this race so they had to win something before they got there.  Everyone had a great time.  Hope you enjoy the video.

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