Good News/Bad News

Tags

Cancer, diet, goals, Leukemia, Weightloss

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.

Have I Told You Lately How Much I Hate Hospitals??

Tags

Breathing, Cancer, Diastolic Heart Failure, Fluid Retintion, Hosptials, Lungs, Medication

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.

 

Another Round

Tags

Breathing, Cancer, Drought, Fluid Retintion, Lung, Rain

Flying High Over Recovered Strip Mining Land

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.

To Be Healthy Again

Tags

Breathing, Cancer, Cardiologist, Cycling, Doctor Appointment, Heart

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.

It Sucks Getting Old :(

Tags

Cancer, CML, Doctor, Leukemia, Oncologist

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.

Patience is Not One of my Virtues!!

Tags

Cancer, CML, Doctor, Lab Result, Oncologist

I called my oncologist twice yesterday and didn’t hear a word from him.  I know Monday’s is his busy days so I didn’t get too upset but when he didn’t call me back first thing this morning I decided to give his office a call again.  I again left word with his receptionist and waited for his phone call.  He finally called me back about an hour later and after I told him what I wanted and why I was calling he sounded offended that I would question his earlier report.   Anyway, the information that is posted on the website is wrong.  The correct result is 0.0001% which is the lowest it’s ever been since my diagnoses.  The website has it listed as 1.0%, which is quite a bit different.

Happy Weekend!!

Tags

Cancer, Cats, CML, Doctor's Appointment, Howard Cosell, Oncologist

This has got to have been one of the longest weeks in history.  After being off for two weeks, one of which was spent in the hospital, the other at home recuperating, working a full week and then off for another week; it’s been difficult for me to get myself out of bed and off to work.  Motivation has been the key.  With only .086 hours of PTO (Paid Time Off) I pretty much have to go to work or else I don’t get paid and with that the possibility of being disciplined is pretty much been my motivation to go to work.

The whole month of May was pretty much filled up with doctor’s appointments.  With the fact that I knew that I was going to take off a week in June, I wanted to make sure I had plenty of time left over for a cushion just in case I had some medical issues or one of my kids or wife, for that matter, got sick.  Not knowing that I myself would have to go back into the hospital for the flu and pneumonia didn’t help matters any. So, with that thought in mind I would always work over to make up for any time that I had to take off for a doctor’s appointment.  Made for a very long month.  Anyway, one of the doctor’s appointments was with a neurophysiologist. Not by my choice but my employers. It seems that my boss wanted me to go because of some mistakes that I’ve been making at work.  Some of these mistakes were quite costly but luckily none were any danger to me or to my co workers.   The appointment lasted for four hours and I failed several tests miserably.  I talked to the doctor that performed the tests the next day and he told me that I had some sort of mental disability.  He did not give me the diagnoses but told me that he would file a report and give it to my general practitioner.  It’s been over a month and I’m still waiting for the results to come in.  Another test that was performed was done while I was home recuperating.  It was an appointment to check my feet.  I spent two hours getting my feet shocked only for them to tell me what I already knew, Diabetic Neuropathy.

Back to the mental disability.  With being diagnosed with CML and taking a form of chemotherapy, I’ve been told, not by doctors but by other people to look into Chemobrain. Personally, I don’t think I have this because I haven’t had a bone marrow transplant.  But I do have most of the symptoms though.  I have noticed that my short term memory is not as good as it used to be and while I can remember some things deep in my childhood other memories during that same time frame I can’t remember at all.  At first I just counted it as getting old but after losing several arguments with the wife I have come to the realization that maybe it’s not just about getting old any more.  And with the current result from the neurophysiologist I tend to agree that I do have some sort of mental issues.  What can be done about it remains to be seen.

A bit of good news is that while I was away on vacation my oncologist called me with the results of my last set of tests.  It seems that my Bcr-Abl tests came back any my numbers were a whole lot lower.  In his words, “the numbers bottomed out”.  He didn’t give me the exact numbers but he did say that they have not been any lower since my diagnosis.  I can’t wait to go back in two weeks to see what the numbers actually are.

With all that’s happening in my life right now, especially with my health, my friends are all concerned that I would try to end it all.  I’m not sure as to why they feel this way.  I’ve never given them any cause for concern in that area.  At least I don’t think so.  All I know, there is no way there is any possibility of that ever happening.  If someone even remotely suggests that I committed suicide someone better be on the lookout for a murderer.  I’ve got too much to live for right now for me to commit something cowardly as that.

365 Day Photo Challenge 356/365 “To Be Pain Free For a Day”

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365 Day Photo Challenge, Cancer, Chronic Myeloid Leukemia, Chronic Pain, CML, Cycling, Diabetic Nerve Pain, Pain Relief

I was thinking earlier this afternoon when the last time I had a day that I went pain free.  Yesterday.  I would have to say yesterday I was relatively pain free for a day.  Lately it’s been my feet giving me problems and now my kidneys.  But yesterday I was pain free because I didn’t have any pain in my feet and my kidney didn’t hurt.  Today, however, my feet were barking toward the end of the day but my kidney remained calm and pain free.

As I sit here whining about my pain, I’m reminded that there are a lot of people that are worse off than I am.  There are days that I hurt, a lot.  But, like yesterday, I didn’t have any pain whatsoever.   Some people can’t say that.  They have to live with chronic on a day to day basis.  There is no pain medication that can give them any relief whatsoever.  Knowing this makes me feel like a heel complaining of my insignificant pain when on most cases I can take a pain pill and for the most part feel better within thirty minutes or so.  There are those that medications can’t do anything for them.  I can’t image that.

I’ll say a prayer for all those in need of pain relief and I’ll include myself in this prayer.

“Life Goes On!”

 

365 Day Photo Challenge 352/365 “New Medication”

Tags

365 Day Photo Challenge, Cancer, CML, Medication, Sprycel

I heard from my oncologist today and I’ve got a new drug to take for my CML.  The survival rate is no more than the previous drug but as long as it keeps me alive I’m good. It also has about the same side effects as the other so unless there’s something I don’t know about I guess I’ll be ok with it as well.

I stayed home again today with this kidney stone that has yet to pass.  I had to get up early this morning to take a pain pill but so far today I’m moderately pain free.  I’ll be going into work tomorrow regardless if I’m pain free or not.  I’m low on time so I have to go in.

365 Day Photo Challenge 337/365 “Renewed Friendships”

Tags

365 Day Photo Challenge, Alabama, Cancer, Friendship, Leukemia, Oncologist, Travel

After my appointment with my oncologist I spent some time renewing an old friendship with a young lady from my past.  I had seen that she was in town for a few days and I called her up to see if she wanted to meet for some coffee.  She was elated to hear from me.  We met at a local coffee shop where we talked for over two hours.  I drank so much coffee I think it will be sometime next week before I get any sleep.

It’s amazing how time gets away from you.  I had no idea that it had been ten years since I’d seen her.  We had so much to talk about but so little time to catch up.  She had to hurry on to catch a flight back to where she’s now living.  It was really good to be able to spend what little time I had with her today.  I’m hoping that it won’t be another ten years before I get a chance to see her again.

“Life Goes On!”