Tags
Trying something a little different. A little nervous about it.
Introducing ME! Don’t know if I’ll do it again.
Me and CML
12 Thursday Apr 2018
Posted in Cancer, Leukemia, Photography, VLog
Category Archives: Leukemia
Today’s Thoughts 4/10/2018
10 Tuesday Apr 2018
Posted in Cycling, Leukemia, Weight Loss
Tags
Cancer, carbs, Compitition, Cycling, diet, Life, Medication, Side Effects
It’s been seven days since I started my new medication. At this time there hasn’t been any noticeable side effects. I’ve had the pharmacist from the drug company call me twice to check on me. Like I said in my last post, this is a fairly new drug so they’re just concerned about me I guess.
On April 21st, there is a city-wide competition with some of the business in town called The Birmingham Challenge. I have signed up with my employer to ride in a 10k bike stroll. The bike stroll is not a competition within itself but we get points as to how many cyclists we get to ride in the event. It’s the same way with the walking event. We do, however, have other events that are competitions, such as the tug a war, dodgeball, corn-hole, golf, home-run hitting, and a couple more events. Last year our company came in 2nd overall. I’ve signed up for the cycling event. I haven’t been on my bike for nearly a year, until this evening. I know it’s not much but I rode a whole 2.4 miles. I could’ve ridden further but both my headlight and taillight were not charged and I didn’t want to ride without them. I really surprised myself. I actually dreaded getting back on my bike and tackling the hill in front of my house. I got a little winded but I made it with no problems.
I’m back on my low carb diet. I blew it this weekend. Those Little Debbie cakes ought to be illegal. I’ve finally got my wife on board with me with her cooking and she’s not giving me bread or potatoes so the failure this weekend is all on me. I just “grazed” all weekend. I had lost seven but on Monday, I gained five. I hate losing the same weight that I had already lost before. Today I did great though. We’ll see when I check the scales in the morning.
I check in again in a couple of days. In the meantime, enjoy your week.
From last years event.
Today’s Thoughts 4/7/2018
07 Saturday Apr 2018
Tags
Bosulif, Medical, Medicine, Observations, Oncologist, Side Effects, Test
I took my first dosage of Bosulif on Tuesday, April 3rd, and so far I’m not experiencing any fortuitous side effects that I’m aware of. I have called my oncologist to let him know that I have started taking the drug but he has not told me when to come back in for any followup tests. I would imagine that he would want to see me in two to three weeks, at least time to see if the drug is working.
For those that may be interested, I’m going to post the side effects of this med later on in this post but first I’m going to recommend someone else’s blog. BeautyBeyondBones is the blog that you need to go take a look at. She is recovering from Anorexia. Her blog is about her recovery and she has several books about cooking and she has published a book about her journey from Anorexia to Recovery. You should go and check her out.
Side effects of the drug Bosulif.
Important Safety Information and Indication
BOSULIF may cause serious side effects, including:
- Stomach problems. BOSULIF may cause stomach (abdomen) pain, nausea, diarrhea, or vomiting. Tell your doctor about any stomach problems
- Low blood cell counts. BOSULIF may cause low platelet counts (thrombocytopenia), low red blood cell counts (anemia) and low white blood cell counts (neutropenia). Your doctor should do blood tests to check your blood cell counts regularly during your treatment with BOSULIF. Call your doctor right away if you have unexpected bleeding or bruising, blood in your urine or stools, fever, or any signs of an infection
- Liver problems. BOSULIF may cause liver problems. Your doctor should do blood tests to check your liver function regularly during your treatment with BOSULIF. Call your doctor right away if your skin or the white part of your eyes turns yellow (jaundice) or you have dark “tea color” urine
- Your body may hold too much fluid (fluid retention). Fluid may build up in the lining of your lungs, the sac around your heart, or your stomach cavity. Call your doctor right away if you get any of the following symptoms during your treatment with BOSULIF:
- – shortness of breath and cough
- – chest pain
- – swelling in your hands, ankles, or feet
- – swelling all over your body
- – weight gain
- Kidney problems. BOSULIF may cause kidney problems. Your doctor should do tests to check your kidney function when you start treatment with BOSULIF and during your treatment. Call your doctor right away if you get any of the following symptoms during your treatment with BOSULIF:
- – you urinate more or less often than normal
- – you make a much larger or smaller amount of urine than normal
- The most common side effects of BOSULIF include: diarrhea, nausea, low blood cell counts, rash, vomiting, stomach pain, respiratory tract infection, fever, abnormal liver function, tiredness or weakness, cough, and headache
Before you take BOSULIF, tell your doctor if you:
- have liver problems
- have heart problems
- have kidney problems
- have any other medical conditions
- are pregnant or plan to become pregnant. BOSULIF can harm your unborn baby. You should not become pregnant while taking BOSULIF. Tell your doctor right away if you become pregnant while taking BOSULIF
- are a woman who may become pregnant. Use effective contraception (birth control) during and for at least 30 days after completing treatmentwith BOSULIF. Talk to your doctor about forms of birth control
- are breastfeeding or plan to breastfeed. It is not known if BOSULIF passes into your breast milk or if it can harm your baby. You and your doctor should decide if you will take BOSULIF or breastfeed. You should not do both
Indication
Today’s Thoughts 3/25/2018
25 Sunday Mar 2018
Posted in Family, Leukemia, Photography
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.
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.
🙂
Today’s Thoughts 323/2018
23 Friday Mar 2018
Posted in Cancer, Leukemia, Photography, Weight Loss
Tags
Clyde waiting for me to come home.
Good news!! I’m down three pounds this week. I’m trying to keep my carb intake to about 35 but I’m not doing so well. Maybe I’ll do better next week.
My meds still have not arrived. I guess I’ll call my oncologist on Monday if I don’t get it this weekend.
Tomorrow I plan on doing some cleaning up in my backyard. After which I plan on flying my drone. My son is coming home tomorrow sometime so I want to make sure I’m here when he get’s here. Next weekend is Easter weekend and all my kids should be home. I’m really looking forward to that. I can’t believe they’ve grown up on me. Two in college and one living on his own. They sure do grow up fast.
Today’s Thoughts 3/22/2018
22 Thursday Mar 2018
Posted in Cancer, Leukemia, Photography, Weight Loss
My new CML meds have not arrived as promised. They were supposed to have arrived on Tuesday but alas, not here yet. My oncologist called this morning to see if I had started taken them yet. He was not happy that they had not arrived. He said that he was going to find out where my meds are at and let me know.
I’ve attempted to start dieting again. It’s been a tough couple of days. I’m doing the low carb diet. I lost 60 lbs on it last time I was on it and I’ve still got that and many more to go. I’m trying to limit my carbs to 35 a day. Today and yesterday I have gone way over. Today was better than yesterday and I’m hoping that tomorrow will be even better. I want to get down to 255 by August 15th and I’m 276 now. I don’t think I”ll have a problem reaching it if I can gain the willpower to stick with it. In 2009, I weighed the most I’ve ever weighed. At 346, I came to the realization that I had to do something. Especially since my doctor told me that I wouldn’t see my kids graduate college if I didn’t do something.
The other reason I’m on the low carb diet is that of my sugar. My body can’t handle carbs. I can drink a cup of milk and my sugar will jump from 159 to over 250. I did well all day today until I got home. I checked my sugar around 5:30pm and it was 185. I had a cup of milk, exactly 1 cup, not a glass full, and when I checked it just now, 10:35pm, it was 325. The last time I did the low carb diet I pretty much did away with carbs altogether. I went from a 9.6 A1c to 6.7 A1c in six months. Now that I’ve gotten off my diet, my sugar has gone out of control.
Tomorrow is another day!!
Oncologist Update; 3/21/2018
21 Wednesday Mar 2018
Tags
BCR ABL, Bosulif, Cancer, Fluid Retintion, Liver Problems, Medicine, Oncologist, Side Effects, Sprycel
My oncologist called this evening wanting to know if my new meds had come in. They had not. He told me that my BCR-Abl numbers had greatly improved which is very surprising being that I’ve been off my Sprycel for nearly two months. Too bad my body can’t handle the medicine any longer. Once my new meds get here, which should be within a few days, I’ll start taking it. The side effects looks pretty bad, diarrhea, fluid retention in both the heart and lungs, low red blood counts, liver problems and multiple other issues. Bosulif will be the third medication that I will be on. There are only a couple more that is out there that is approved by the FDA. I’m hoping this works with minimal side effects
3/16/2018 Oncologist Update
18 Sunday Mar 2018
Posted in Cancer, Family, Leukemia, Photography
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.
Memories of a Winter Day
06 Tuesday Mar 2018
Posted in Cancer, Leukemia, Photography
Taken just before Christmas on my way home from work. So afraid of another “Snowmageddon” which left over 1,000 people stranded at work for three days, our company decided to let us go home early. We don’t get much snow down here in the deep south but when we do it shuts down the entire city/state.
A dash cam captured my trip from work to the first traffic light. I edited it and added music to try to make it more interesting.
Hope you enjoy.
Update 3/4/2018
04 Sunday Mar 2018
Posted in Cancer, Leukemia, Photography
I know it’s been a while since I’ve posted an update and I do apologize for that. With my health such a roller coaster and my job is as crazy as it is well, I just haven’t taken the time to write.
First of all, let me say that I’m feeling better today than I have in years. Seriously, with all the crap my body has been going through, it’s about time. But, I have a feeling that it’s about to change for the worse again.
We found out that the meds for my CML was causing all the fluid to build up around my heart and lungs; more so the lungs. In short, the oncologist took me off my meds and my pulmonologist took 1.5 liters of fluid off my left lung. He left fluid in my right lung due to him not wanting the infection to set in on either or both the lungs. A heavy dose of Lasix and now my right lung is clear of fluid. In two weeks I see my oncologist and a new med will be prescribed and one of the main side effects is fluid retention. Oh well, it was good while it lasted.
At this writing, I will be retiring on August 15th of this year. After 32 years I’ve finally had enough, well, I’ve had enough long ago but I can officially retire when I turn 55 so I’m turning in my notice. I’ve got a lot of hobbies so I know I will stay busy.
I’m working on a Youtube video about the tornado that went through our city back in 2011 and I’m doing some test shots with my drone. Let me know what you think of it. In the video that I’m working on, I will hopefully show some areas of our city that still shows some damage that the tornado left. I will also show areas of major improvements that wouldn’t have happened if the tornado hadn’t visited our city.
There’s a lot more going on but I’ll post about it later. I hope you enjoy the video.
Tim
Grayfeathersblog 