Trying something a little different. A little nervous about it.
Introducing ME! Don’t know if I’ll do it again.
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.
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!!
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
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.
Bad news first. My Leukemia is back. Got a call from my oncologist on Friday and he told me that my numbers were back up. I’m to increase my dosage and go see him in six weeks for more blood work. Nothing else to do until then so there’s no since in crying over spilt milk.
Now for the good news. I’ve started doing the low carb diet. I’m limiting my carbs to 35 to 40 per day. I started last Saturday and I’ve lost close to ten pounds this week. I know most of it is water weight but hell, then pounds is ten pounds. Another plus is that my sugar has been a lot better as well. It dropped about 30 points this week.
I went hiking yesterday with the wife. I won’t go into too much detail here because I want to do a review of this waterfall on another post. It wasn’t but a two mile hike but the steep hill made it much more of an exercise event for me. We had to stop several times comeing back for me to catch my breath. I can’t wait until I get back in shape again.
On another note; my weight loss journey started when my weight got to 345lbs. My ultimate goal is around 225lbs. Until recently I thought I’d never reach that goal. I can now see a light at the end of the tunnel. It’s very dim mind you but it’s there. Today’s weighin was 268lbs. It won’t be long until I reach my mini goal of 265lbs. It’s taken me five years to get down to where I’m at. Will it take me another five years to reach my ultimate goal? I hope not.
To get it out of the way and I know everyone is tired of seeing pictures of the “Super Moon”, here is the one that I spent over an hour trying to get the exposure correct. Not exactly happy with it because it’s still a little out of focus.
A lot has happened since my last post and I’ll try to make it short as to not bore anyone. But a brief recap is in order. Back in August I had major breathing issues and I checked myself into the hospital thinking it was my heart. They did a stress test, an echo-cardiogram and a heart heart cath. and found that I had 70% blockage in one of my arteries where they placed two stents. My breathing had not improved any.
They then decided to do some breathing tests and ordered a CT scan. They found fluid in my lungs. They drew out 2 liters of fluid from my right lung. I felt great afterwards. They think that it’s my CML meds causing the fluid retention.
Two months later, in October, my breathing started getting bad again. My pulmonary doctor ordered another CT scan and found more fluid in my lungs. He pulled just over a liter of fluid off my right lung. Keep in mind that they haven’t touched my left lung.
Since all the fluid has started building up in my lungs, all three of my doctors (cardiologist, pulmonary and oncologist) agreed that a reduction of dosage in my CML meds. It was reduced from 100 mg to 80 mg. But my problem returned even quicker after my last fluid withdrawal.
Last Monday, November 7th, I couldn’t take it any longer. I had to get some relief. I couldn’t do anything without stopping and catching my breath. Tuesday, after I voted, I went to the emergency room. I told them what I wanted them to do and they proceeded to do x rays. X rays showed nothing so they proceed to do another stress test and echo cardiogram. But not after I sat in the emergency room all day on Tuesday. I was finally admitted late Tuesday evening and they started doing the tests on Wednesday. Wasted a full day on Tuesday.
I was released on Friday evening but not after having another liter and a half removed from my lungs and another diagnosis of diastolic heart failure. So, I’m on nitroglycerin patches to help me breathe and a whole lot of other meds as well.
For those that have been following, my breathing had gotten pretty bad as of late. I’ve been passed around different doctors for several weeks now and finally I was able to get a little relief. I had to take a full day off last Thursday but I was able to meet with my pulmonologist and he pulled just a little over a liter of fluid off my right lung. I feel that he could have pulled more out but every little bit helps. I’m not breathing as well as I was when I got out of the hospital a couple of months ago but they were able to pull 2 liters out last time. Their not exactly sure why I’m retaining the fluid but they have an idea that it’s the CML meds causing it. They weren’t able to test the fluid last time because the doctor didn’t tell anyone to test it. This time he took several samples to send to the lab so hopefully they’ll be able to narrow it down as to the cause.
It’s been 28 days since we’ve gotten any rain here. The picture above shows an area that is normally very green. As you can see it’s all covered with brown grass. Can’t wait until we see some rain.
This year has got to be the worst year so far as far as my health is concerned. I’ve already been hospitalized twice this year and another visit is just around the corner. This month alone I’ve been to a doctor five times for tests and other examinations.
Since my bout with pneumonia back in May, my breathing has gotten worse. So much so that I can’t walk any distance or do any type of work without gasping for a breath. Even sitting here typing this my breathing is labored. I had a nuclear stress test last week as well as an ultrasound of my heart and both tests have come back without any abnormalities. My regular doctor is supposed to be setting up an appointment with a cardiologist hopefully one day next week for a follow up.
I long for the day I’m able to walk down the hallways at work or hop on my bicycle for a twenty mile ride without feeling like crap.
For several months now I have been undergoing a barrage of test by one doctor or another. If you’ve ever seen the movie National Treasure, it’s like one clue leads to another clue. It all started with a personal evaluation that was performed on me back in March from my boss. In the months prior to my evaluation I had made several costly mistakes. Luckily they were all monetary and not personal injury. During my evaluation my boss discussed with me that he was worried that either I would be harmed by my actions or the person I was working with would be harmed. He also stated that until I was checked out by my physician I would be temporarily placed on light duty with any safety related responsibilities. At first I was furious as you can imagine but the more I thought about it the more I realized he may be right. Although I didn’t want to admit it I had been experiencing some forgetfulness but I had chalked it up to getting old.
The first test was with a neuropsychologist. I failed miserably. One test consisted of the nurse reciting a list of paired words, about 50 I think, that after she recited the list I was supposed to repeat to her one of the words that was paired too. Example; Truck-Bread, Dog-Umbrella. She would read Truck and I was supposed to tell her Bread. I failed at this test. There were several other tests that I failed at. The results that were given to my primary care doctor was that I had three areas of disabilities, motor control, memory loss and multitasking.
Another test that was performed was on my feet. I had been put in the hospital with influenza A and pneumonia. After spending a week there I was released to spend another week at home. While I was off I had an appointment with a neurologist in which I spent over an hour being hooked to electrodes that shocked my feet to find out just how numb they really were. After the tests were performed I was given the diagnoses of diabetic neuropathy. Hell, I already knew that.
During one of my visits with my oncologist I was given a test to check out my immunity because being admitted twice to the hospital in less than six months set off a couple of alarms. He did a preliminary test and it came back showing signs of IgG deficiency (immunoglobulin G). I went back on Wednesday of this week to let them do a more thorough test. I’ll find out the results of those test sometime next week.
Today I went to another neurologist that all i did was talk and answer a few questions. A small word association test was performed and again I failed. He asked me to remember three words and he would ask me later on to recite these words back to him. When asked a few minutes later I couldn’t remember the three words. I saw the doctor for only a few minutes after which he wanted to do a blood test and an MRI. The blood test was done downstairs but the MRI will have to be scheduled once the insurance company approves the test.
So, as you see I’m falling apart. I’m not letting it get me down. Just living day to day right now.