Not What We Thought

Well after a year everyone has figured out the spleen has to go. For nine months they thought I needed a bone marrow transplant but lo and behold the last bone marrow biopsy showed the marrow is full of healthy blood cells.

I mentioned way back in February that it probably was my spleen. Oh no they thought because my blood results couldn’t tell them what I had. Well if your spleen is almost 3 times the normal size and it’s not letting the liver do it’s job it probably appeared more obvious to me than them. I don’t know.

Was supposed to have the surgery the 18th but they bumped me back to the 25th cause some people needed surgery more than I did. Oh well, I hope that was a one off.

Now despite being away from work on disability it does feel a bit like retirement. Physically I would like to do more things but I find if I do a few things I can hardly wait to rest.

The other night there was an open house for kids entering high school. I took my son and it lasted for 2 1/2 hours. It was well organized. The only thing I found was about halfway through I just wanted to go home. My back is out cause of the seats and thank heavens touch wood I didn’t catch anything. I can feel the hemoglobin low.

Now you think cause I have been off work for almost 7 months I would be itching to get back. Not really. So I am thinking why does a retired person want to keep working anyway? In their whole life haven’t they come up with an interest or hobby they would like to pursue?

At this present time I am voraciously reading books that are really interesting to me. Would I rather be working than reading a good book? Hmmm..

You know what I think it is that I never worked for only the money. At the end I was physically no good anyway so the money wouldn’t have mattered.

If you read my book you will notice it was always about the life experience. Switzerland, England, cruise ships, Jasper in the Rockies etc..Did I make scads of money? Not in your life!

Some people want to wait till they retire. I get it. Then what would happen if I waited. Here I am 3 weeks before my 59th birthday and I go for transfusions every 2 weeks. Hopefully the spleen’s removal will release all the good cells.

So I am content and really settled.

Let me say this as this may come as a surprise. All those places I went to in the book were never on my bucket list. I never thought in school about seeing the pyramids. A friend and I decided to go to Europe one day sitting on his balcony. Our budget was $15 a day.

Never would I have been able to afford the air fare or cared to put it on a credit card to go. It would have taken me months if not years to pay it off. I remember buying some furniture and television when I moved into an apartment at age 24. Took me 12 monthly payments to pay it off.

So I had nice furniture no life.

What got me to those places was the excitement of the work experience which happened to take me to some cool places. I got really good.

It’s all about knowledge. I guess if I had Facebook back then everyone would have got sick of 12 photos of a different place everyday. I don’t know.

So what I did was live on limited possesions. Just a suitcase and my books most of the time.

So in ending this blah blah post just remember put the life experience before the money. You will be happier. Do it for yourself cause no one else will give a shit what you do.

In the end I bumped into a wonderful wife and 2 great boys. Didn’t see that happening either.

The wife wants to go to Paris so we should do that when this is over. That’s about it and see our kids grow.

That’s all over and out.

Relaxation Time

It’s difficult to get used to but now I am on long term disability. Of course I can return to work when I get better but it appears that will take a long time to the bewilderment of the doctors. They cannot fix what they cannot diagnose.

I am trying to spread out the bi- weekly transfusions but feel somewhat listless. As soon as my medication ended for my mouth’s cold sores, two days later I started getting them again. So back to the magic mouthwash for comfort.

The weather is getting colder so I am dressing up nice and warm.

I am glad I am not working. When this is all over with my age nearing 60 or more I would not be hired by too many people anyway.

Retirement came soon.

What I do not miss in the service industry is the mental preparation I would endure to get ready for the shift.

Whether it was going to be a slow or busy night I had to be ready like every night was a busy night. I left anything that was bothering in the car. I made sure I had enough mise en place for the shift. Clearly thinking, I wanted to be 100% in control.

When I worked on the ships every meal service was “showtime.”

Waiting on tables takes a lot of physical and mental energy. Now that I do not do it anymore I do not miss it.

That part of my life is over. What I do to keep busy are odd chores, lots of reading, and cook dinner for our boys.

The days go fast by. It’s too bad I haven’t any diagnosis of what it is that I have.

Right now what I really enjoy is watching the hockey on Saturday night.

You gotta appreciate each day and the little things. Especially for me. The little things keep everything in perspective.

1992 in Monte Carlo

After All That

Yesterday Soley (my wife ) and I headed off to Juravinski Hospital in Hamilton fully expecting to hear more of my probable bone marrow transplant. I think it’s been since March that we have been hearing of the transplant because whatever they try my immune system does not seem to improve. Immunoglobulin IVs , Neupogen does not seem to budge my neutrophils or white blood cell count.

So the doctor comes in and said that she could not get approval for a bone marrow transplant because they are still not 100% sure. They are not sure it is the problem.

She explained my cells act like a freeway with no cars in sight but all the dealerships are full of cars. I have a lot of cells the biopsy showed 80% in fact and all in regular shape and appearing healthy.

So I asked what about my neutrophils count at 0 and my white blood cell count at 0.9? She said usually people with that low count have about three months to live unless action is taken. Their immunity is so low they catch infection and die. In rare cases such as mine I can go on living for years with low blood counts.

Bottom line is the bone marrow transplant is a big deal and it would be awful to go through all that and still have the same result. That I get.

Another add on is my liver biopsy which I was led to believe was reassuring showing no concern the second one I had showed more cellular lymphoma cells. It is a mild cancer that can be treated with oral medicine. So we have to keep an eye on that now.

So does this mean I will never need that transplant? No one knows for sure but I think I have to be near death’s door to get one. They will not do it if my cells all appear healthy. Like I have heard before they are just lazy. Only work when they have to. The doctor said in the past 9 months I have had no infections of any kind. I asked what about the sore throats and she said that was nothing. Normal stuff.

Basically they cannot diagnose what the problem is coming from. That makes convincing a board of a transplant pretty difficult.

She said stay off work and in three weeks come back after they have looked at the liver biopsy and bone marrow biopsy more closely.

Meanwhile I still go for the bi-weekly bloodwork to check on the hemoglobin to see whether I need a transfusion. My goal now is to start working on getting that up higher so I do not have to go as often.

In conclusion the doctors are baffled like the one in Guelph was and for three years the one in Orangeville. This is probably something I have to live with indefinitely but my hopes of this going away with a transplant are faint. They will be monitoring me though should anything starts going haywire.

At least we found out about the liver. That could be the problem not the bone marrow. It could be causing the problem but at this moment anyone’s guess is as good as mine.

If you are confused about all this it appears the professionals are as well. I am learning as I go also.

 

 

Almost 4 Months off Work

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Thanksgiving is probably my favorite holiday. It is that time of year for me which seems the less stressful. The other holidays seem to be too commercial for me whereas this one all anyone cares about is the dinner. In Canada we celebrate it the second Monday of October which I prefer because if it was closer to Christmas then there would be all the sales going on. Here we do that on December 26th which I do not partake. Besides it my oldest son’s birthday that day and the last thing I want to do is shop.

Coming up on the 17th it will mark four months that day since I left work. Since then it has been blood transfusions every two weeks plus a couple of liver biopsies and a bone marrow biopsy. I am going through all this so they can check me all out before I undergo a bone marrow transplant. It’s not cancer but my immune system is not working well and my number are quite low at 0.9. My red blood cell count is low as well as my hemoglobin and platelets. There are a couple of other things down as well. My neutrophils are at 0 which help fight infection as well. The doctors say I am a conundrum as the cause of what I have is not certain. With these tests and things they have prescribed to me nothing seems to jump-start my blood cells. I just have lazy blood cells.

So I left work so I could file for long-term disability. I am glad I did because getting it all done is taking a long time. I am still getting the forms in and there is a four-month waiting period before it comes through. On my profile here it says that I should be getting the bone marrow transplant sometime in August but that has been put off till January. The second liver biopsy was requested because the pathologist wanted more tissue to examine. Last week I got word that everything appears to be fine. At least nothing to be concerned about. With results slow to come in now it is October and it will probably be not till the New Year when I get the transplant. I would rather them make sure everything was a go before it begins. We do not want organ failure while doing the transplant. So I am expecting a call from the doctor this week as to the next steps.

Being off from work for the past four months hasn’t been easy. Although I do not believe I can work if I had to right now as I tire easily but also there is one time I was sick late September with a sore throat and cold that caused me to lose 11 pounds. The antibiotics take a long time to work because the immune system doesn’t do much to help. I get cold sores a lot in my mouth with my lips and tongue getting the worst of it. When I get them on my tongue it hurts and makes it difficult for me to talk. Sort of rules out being a waiter. Now with winter not that far away I have to be extra careful not to catch the flu. I will make sure I wear a smock over my nose and mouth to prevent any germs that may enter.

The four months have seemed a lot longer. I cannot say I miss serving tables but I do miss the social interaction I had with my co-workers. I miss the jokes, sarcasm, and spontaneity. It goes without saying I miss the income as well. When you are working in a profession for so long it is difficult. I worked in places that most people would just love to go and vacation. I met my wife because of the business so  I guess everything I have is due to the hospitality industry. The people I had the opportunity to meet and work with was simply outstanding. People from all nations. I do not think I can say I was ever really stressed out looking back. There was always work and when you left work there was your own life to follow.

I know it meant a lot to me because on my last day after saying good bye when I walked out the door I actually stopped for a moment. I got emotional for a minute because it was not in the forecast. I knew I had this blood problem for a while but thought I could work through it. It happened fast when the wheels started to fall off.

Now I wait for now January. I make sure I do a good walk each day, eat well, and get plenty of rest. I do some chores around the house so the day moves fast.

I want to be as good shape as possible for what lies ahead…

 

 

 

What’s The Hurry?

Since I have been on sick leave from work for close to two months I have noticed a few changes in myself and things happening around me. At the same time it has helped me understand why retired people act the way they do and for good reason.

You see when I was employed what  I did during the day revolved around work. I worked as a waiter in the evening so during the day I would rush around to get things done then hopefully have a bit of time to rest before my shift started. Now that I do not work I do not have to rush as much similar to a retired person.

Two things I have to say that I have noticed since I stopped working.

One is I eat a lot slower. Whereas once I was always quick to eat now everyone has finished and I am still at the table chewing longer and taking bigger gaps before the next mouthful.

The second thing I have noticed are the drivers. I was always one if I missed an exit or made a wrong turn sure I would get a bit choked at myself but I would never try to make a U-Turn in the middle of traffic to save a minute. In a span of 15 minutes I saw a car try to make a U-Turn in the middle of downtown and stop short of slamming into a right of way oncoming car. Just after that on a left turn I saw another car pull the same stunt. Why do people for the sake of saving a minute try to kill themselves or others instead of just going to the next street and turning around and doing it safely?

But now I know why retired drivers drive slower and can get on everyone’s nerves. It is because they are not in a hurry like the working folk. That explains why I tend to now drive more relaxed and less of a hurry.

So I eat slower and drive more relaxed. Therefore I have more patience with experiences that are delayed. They do not bother me at all. If I go to a restaurant I am there to enjoy it rather than hurry with my meal and get out.

In the old countries they take their time doing things. No hurry it will get done. Maybe not today but it will get done.

I like that way. Rather than wait to retire or be away from work for a couple of weeks vacation we should all live like this. Just take it easy.

What’s the hurry?

 

 

 

 

 

What To Do About Trump?

It has been over six months that he has been the President of the United States and outside of his base he has not won over any new supporters that is for certain.

If I was the news media though I would just report on the news and forget about the tweets. I would definitely boycott the press media conference because that is full of denials and who knows if that person that use to be Sean Spicer is telling the truth anyway.

The more reporting that is done on his tweets  the more Trump loves it and so does his base.

Let the Senate judicial hearings and FBI do their job on the Russian meddling in their election. Investigate quietly without broadcasting every little thing that happens. It provides the distraction Trump loves.

Let Trump’s failure on repealing and replacing Obamacare take over the news. Let his failure to endorse the Paris Climate accord take over the news and why that was a colossal mistake. When trade renegotiations take place in August over NAFTA  and he tries to rewrite deals that will cripple trade within his own country take the front of the news. These are the failures that will get him in trouble when it comes to re-election, not his tweets.

What about his tax reform that hasn’t got started yet or his infrastructure promises that have yet to take flight. Broadcast that and ask the questions why.

Right now it’s Trump that is in control not the news media because the news media is not focusing on Trump’s inaction on so many things he has promised.

What about his cutting funding on women’s issues and the effects that it is happening right now. Start interviewing those people instead of trying to outwit Jeffery Lord on CNN.

That will turn things around. Start reporting on issues that affect everyday working people and forget his tweets.

I Can Always Tell When I Need a Top Up

Since I have been off sick I can always tell when I need a transfusion.

Tomorrow I get my blood work done and it will probably show low heamoglobin. Then a couple of days later I will need a top up.

As well they will be checking for iron. As the transfusions add up so does the iron. Too much can be toxic.

I met someone last night who had an autocylus transplant. That is when they take a few of your own blood cells in a biopsy. Then they fix them up. They give you the chemo , kill the cells in the body then introduce the repaired ones.

He was in the hospital 4 weeks then had to live near the hospital within 3 minutes.

He said I’ll be fine as long as I don’t  catch a cold or I’ll die.

Good advice I guess!

My mouth seems to be a big problem. I suffer from recurring cold sores usually just one at a time that last for a little over a week. Well I just got rid of one now I have a sore on the right side of my mouth that hurts when I eat on that side or brush my teeth. On top of that my gums bleed when I brush my teeth.

So I made an appointment with the dentist to check my teeth and gums. I got to get the go ahead from my doctor first though to make sure the dentist doesn’t give me anything that may worsen my blood results. With the low immunity I have it would be tough to fight a cold right now.