01 Thursday Sep 2022
Posted in Photography
Tags
Cancer, CML, poll, Weight, Weightloss
Tomorrow is weigh-in. I’d like to see if anyone out there is willing to voice their opinion as to how much I’ve gained or lost.
Come on guys let’s play along. Did I gain weight? If so, how much? Did I lose weight? If so, how much did I lose?
I’m looking forward to seeing what you guys have to say. Remember, I lost over fifteen pounds last week. Did I lose that much again? What do you think??
20 Saturday Aug 2022
Posted in Cancer, Weight Loss
I turned 59 a few days ago. I did not go into a dark, deep depression. It was just another day for me. As many health problems as I have, I consider it a blessing just to wake up in the mornings. My wife, on the other hand, has an issue with each birthday she comes across. She’s a little over a year older than me and when she turned 60, let’s just say that she turned into a different person. It took a few days for her to get out of her slump. I’m not looking forward to next year.
I know I’ve written about it before but one of my health issues is that I’m having issues with my breathing. This has been an ongoing thing for several years. It started off as a side effect of one of my cancer medications. The medication was causing fluid to build up around my heart and lungs. I had to have fluid removed from around my lungs on four different occasions totalling up to around 5 liters. The first time I had it done they weren’t sure what was causing my breathing issue and it took several weeks of testing before they found out. During this time I wasn’t able to do much of anything without getting out of breath. Even walking a short distance became a struggle. Remember now, I was still trying to work through all of this.
Like I said, this has been an on going struggle for a couple of years now but after several medication changes it got better. Now it’s back but with a difference. There is no fluid around my lungs. X-rays have proved it. As with the other times, my weight would go up dramatically, and it’s doing the same thing now. I’ve gained upwards around 30 pounds in about a months time. That’s not normal. I’m on mediation to help relieve the fluid but I ran out last week. I had to wait until this week before I could get it refilled because of the insurance.
I think a big contributor to this is salt. I’m supposed to be on a low sodium diet but that’s hard for me to do. I’ve greatly reduced the amount of salt but I need to reduce it some more. Another thing that is not helping is, of course, my diet. I’ve got to do better. I’ve committed myself to a weightloss program for the next six months. But, until I get this fluid undercontrol, I will just continue to gain weight. Losing weight for me right now will definitely be a challenge. One, I get out of breath so easily so walking is a challenge even the treadmill will be a challenge. Two, the fluid. If I only knew the cause then I might could do something about that.2
On August 15th, my birthday, I weighed in at 287.2. On the 16th I weighed 287.4, 18th 288.5, 19th 290.5, also on the 19th I received my medication and the next day, the 20th I weighted in at 286.6. Of course I peed every thirty minutes or so. I haven’t weighed in this morning so I don’t know if I’ve lost any weight or not. BTW, I know I’m going to get some people telling me not to weigh everyday but this is what my cardiologist wants me to do. I should weigh about 275lbs once I get all the fluid off.
I’m planning on posting weekly to let everyone know how I’m doing on my weight loss.
02 Thursday Jun 2022
Like I said earlier today, I’m still here. I kept thinking that I needed to post something but as always, I got busy with something else. I’ve got a bit of bad news to share. The breathing problems that I’m having are not caused by my heart or fluid in my lungs. What’s worse is that they don’t know why I’m having these issues. I can’t walk into my home and climb the one flight of stairs without becoming winded.
Not so long ago I was riding my bicycle twenty miles a day. Not any more. My son now is riding my bike where he lives. At least my bike is getting some mileage on the tires.
20 Sunday Dec 2020
Posted in Cancer
A lot has gone on since my last update. I’ll try to limit my discussion to one or two items as so not to bore you.
My last Oyncologist report was good but on one of the tests shows that my Creatine levels were high so off to the nephrologist I go. Wwe illinated some meds and reduced my lacix but that didn’t help. I was told to lay off my lacix altogether but when I did that I gained nearly ten pounds in a week. Cause? Fluid. Fluid has been my advasary for quite some time. I go to the gym twice a week, I diet all week long, I drink at least 64 oz of water a day but my weight remains about the same each day. As long as I’m on the lacix I’m okay but when I go off it I gain weight. But, on the other hand, while I’m on the lacix I don’t lose weight no matter how hard i try. This has been going on for a couple of months now.
I had a conversation with my cardiologist the other day and he said that he didn’t want me to get my heart rate much above 130 and I’ve been trying to abide by that. It really doesn’t take much to get my heart rate up and when it does it stays around 125 to 135 and that’s when I’m on the treadmill or spin cycle. I usually try to stay on those machines for at least thirty minutes each. When I’m working out with my trainer he has my heart rate up to nearly 120 at times.
Stay tuned and I’ll tell you about my recent eye surgery.
06 Sunday Sep 2020
Tags
As part of The Great Cyclel Challange, a cycling effort to raise money to fight kids cancer, I have set myself a goal to ride 50 miles a week throughout the month of September. My goal for the event is just 100 miles because at the time I just didn’t think I could ride that much due to not riding any for about a year. It has become apparent that I may want to up my main goal to 200 miles.
I was short milage last week because I had broken a spoke. I’ve never replaced a spoke nor did I have any spokes to replace it with. The guy at the bike shop stated that it would be the 9th of September before I’d get my wheel back. I told him why I needed it back sooner but he didn’t have the same concern that I had. I was able to get the wheel back a lot sooner than expected so that meant that I had at least 23 miles that I had to ride to reach my 50 mile/week goal. Yesterday I road a little over 25 miles which made my weekly goal of 51.98 miles.
The goal starts over today but I’m doing a recovery day. Yesterday came with a small price. I went to stop and I couldn’t get my left foot unclipped from my peddle and down I went. Banged up my left knee pretty bad. I’ve been hurt worse but I’m going to take it easy today. Maybe I’ll spend the afternoon cleaning the bike. It’s gotten quite dirty over the past week of riding.
17 Friday Jan 2020
Posted in Cancer, Diabetic, diet, Leukemia, Weight Loss
Tags
Happy belated holidays! Wow! It’s been a rollercoaster ride for me and my family. There is no way I can put all that’s been going on in one post. If I did, it would be a very long post and most would not read to the end. So, that being said I’ll probably post several topics in the next few days. I’ll go ahead and briefly tell you what’s been going on though.
Diet Nonexistent. I really tired but these holidays were just too much for my weak will power. I am back on it but and I have lost a few pounds. I got on my treadmill the other day and I think the thing has a weak motor. I know I weigh quite a bit but I don’t think the thing should stop suddenly like that. Maybe I’ll rejoin the gym at the local Baptist church up the street.
Dad’s Kidney Stones Dad called me up before Christmas wanting to know if I could take him to the hospital to have a kidney stone removed. It seems that my mom, which is in her 80’s, had to take her to a clinic in the early morning hours that morning. The doctor there said that he had a stone which was too big to pass on his own. 1.2mm x .08mm. The clinic did not have the resources there to break up the stone. I took him to the hospital and the doctor there said that they normally do not call in the urologist for anything that small. My dad and I looked at each other. I looked it up and 1.2mm is nearly half an inch. I called the doctor out on it and he reassured me that my dad could pass the stone. The day after Christmas, which was about a week later, my sister made an appointment with a urologist and had the stone removed. I won’t go into how they did it but from the sound of it, I wouldn’t want to have it done. I spoke to him yesterday and all is well.
Oncologist Report I haven’t been or heard from my oncologist since last August. A lot of things have been going on with different meds that had me concerned about my numbers. You see, I’m on drugs for some ulcers in my lower stomach. One of the drugs that I’ve been on is Zantac. This drug has been known to lower the effectiveness of my cancer drug as well as cause cancer too. In order for the ulcer med to have minimal effect on my cancer drug, there had to be a six-hour delay before I could take my cancer drug after taking the ulcer drug. Now, the new drug they have me on after taking me off the Zantac, they want me to take it four times a day but still keep the six-hour delay. Can’t be done. So far I have only figured out that I can take it in the morning and once at night before going to bed. This is crazy. Oh, by the way, all my numbers are good.
Ok, that’s it for tonight. There are several more interesting items that I want to talk about so stay tuned.
11 Friday Oct 2019
Posted in Cancer, Leukemia, Photography, Weight Loss
As the title says I’m feeling pretty good right now. My breathing is better, I’m taking iron infusions so my energy is better as well. So, with that being said, I will be starting on a three month diet beginning on Monday of next week. I have a plan, one that includes low carb, regular exercise; mental as well as physical. I’ve joined a neighborhood gym that will help me during the cold and rainy days that are sure to be coming. I will post regular updates here so I can keep up with my progress. Also, I’m on Fitbit so if you would like to send me a request, you can see live results. My email address in timhughes1963@gmail.com
See you on Monday!!!
03 Thursday Oct 2019
Posted in Cancer, Disability, Family, Leukemia, Photography
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.
19 Friday Jul 2019
Posted in Cancer, Leukemia, Photography
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.
17 Wednesday Jul 2019
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.
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