Wednesday, September 29, 2010

the office visit

One must remember that medicine is an art not a science.  Information can be teased out of the patient and it is my experience that nurses are better at this than doctors. 

There are of course blood tests and they help too; I suggested a Hemoglobin A1C and my doctor smiled and said yes.  This test should tell us all how badly my red blood cells have been mucked up by the high sugar levels I've been providing myself with.

For a diabetic, it is always good to remember that starch breaks down into glucose.   And I had become addicted to toast and butter with my eggs.  

Other tests will be TSH which is the thyroid stimulating hormone produced by the pituitary gland and a T4 test which measures thyroid hormone itself.  

I am scheduled for an echo cardiogram because R-CHOP can damage the heart.   Sometimes mine does not seem the same; especially when I get tired and short of breath walking. 

It is reasonable that the R-CHOP chemotherapy and Revlimid account for my difficulties; but there are other possibilities and it is best to look into them now rather than later. 

It may save my life.

Monday, September 27, 2010

prep for a visit to my oncologist

Just to get the timeline straight my last R-CHOP infusion was mid April and I took my last revlimid in early August.   I'm still having fatigue after any exertion such as going in for a port flush.

My last visit to my oncologist was August 30 and I sent an email to the study coordinator nurse (and bizarrely expected her to forward it to my doctor) in short:

 I am somewhat better hydrated and have less dry mouth. Much less constipation.

My energy level is better, but if I walk perhaps 3 times in a week I will be exhausted by the end of the week. Week before last I was tired on Thursday after walking Monday, Tuesday and Wednesday. I walked on Thursday as well but only went half as far. I was tired Friday. If I don't walk I feel better towards the end of the week.
 

I still have headaches. They aren't as bad when I was on the revlimid or as frequent. My neck doesn't feel as bad as it did on the revlimid.
 

While I was on the revlimid I would occasionally feel a couple of thumps from my heart, but it was infrequent and went away immediately. In the evening several weeks ago I felt more frequent thumps that seemed almost to be an irregular heart beat. When it happened during the day I called my family doctor and he wanted me to come in immediately and gave me an ECG. The little squiggles appear to be normal, although if you look at the spikes you can see that their regularity is not perfect (as they used to be). Some of them are a bit further apart or closer together. My doctor heard some of the heavy beats when he listened to my heart. Since caffeine can affect this kind of thing I greatly reduced my consumption of caffeine and they seem to have gone away.

A couple of days ago I emailed my oncologist's nurse navigator and the following are the important parts of that email:

In many ways I have recovered from the Chemo and Revlimid but when I
went to work a few weeks ago I was able to stay for 3 hours before I
started to get tired.  I came home and it was difficult to work so I
napped for two hours and felt better after that.

Last weekend I went shopping on Saturday morning and went to the
pharmacy, Trader Joe's, Whole Foods and Harris Teeter.

After I got to Harris Teeter I became tired and started to not feel
well.  I know four places might be a bit much, but I figure if I can't
put up with that I'm really going to have a hard time going back to work.

The plumber came over for a few hours and we talked over the kitchen
sink which had a problem.   He was only there for an hour but I had
repeated moments afterward of feeling suddenly tired until I rested.

So my question is for people with whom fatigue hangs on longer than it
should how long does it hang on?

 
So I will see my oncologist on Wednesday and discuss all this.  They'll probably take blood (once more) and look at the results of the tests the way an Augur examines sacrificial entrails.

What will they find?

Friday, September 24, 2010

what about that fatigue?

I emailed my oncologist's nurse navigator last night and got a response today.

It seems that fatigue at this stage is not normal so I will be seeing my oncologist next week.

I'd be more clever, but I have a headache and am too tired.

Monday AM is my port flush.  Since it's a double port it's one flush per side.  Stick that needle in and push that plunger.  Twice.  Goodie.

Tuesday, September 21, 2010

fatigue remains

I don't seem to have much in the way of reserves yet. 

Saturday is "grocery shopping" day and first I went to the pharmacy to get some of those wonderful little pills that help things move through my intestines without plugging them up.   Then over to the place that has some nice (cheap) bread that I like and a few other special things; then on to the place that has the good meats and where I buy most of our food and then to the supermarket where I get the rest.

All this shopping takes about two hours and somewhere at the supermarket I pass the point where my body can be comfortable anymore and I may get flu like symptoms or just feel like crap.

And then I come home with a car full of goodies.  And I unload and do some stuff with all the nervous energy before I collapse and check out mentally for the next four hours.

You can see the problem, one of these days they will want me to come to work and I will have a problem with that. 

Thursday, September 16, 2010

a bit of dental work

It was a very pretty day in Chapel Hill today; I drove to the dentist at about 6:45 AM to finish having a couple of crowns put on my back left and the drive felt nippy.   I was wearing a T-shirt so my arms felt the cold.

Before the procedure started they numbed up the inside of my cheek and injected something to ease the pain.   While I was waiting for the lidocaine or whatever it was to kick in they sat me up and I watched one of the morning talk shows.   I felt lightheaded like I was having an anxiety attack.

I never have anxiety attacks - what's wrong with me?

Is this one of those little things that I have and will discover that is not the same before and after chemo?

Saturday, September 11, 2010

It's Saturday, Oh Yes and How do I Feel?

I do the shopping rounds on Saturday, it takes at least a couple of hours and I can consider the fact that I make it through more than one store as an accomplishment.

It was only a few months ago that I had a difficult time making through one store without having the experience while walking down one of the aisles of abruptly feeling a sense of weakness. 

In store number three today I had "flu like symptoms" without the nausea; somewhat the way I had felt when my liver wasn't working right so many years ago.   It eventually passed.

Normally I feel fine, except a little over weight. 

Considering how little it takes to put me in a physically weakened state,  I am wondering how long it will take my body to recover from this. 

Will my body will recover from this?

Tuesday, September 7, 2010

Another Day in the Life

I went to work at the office today for the first time since some time in May and lasted about three hours before I began feeling the energy drain out of me. 

My boss replied to an email I had sent out earlier that said that I was in the office (my boss and I are on opposite coasts) as I was about to enter something I tried to pay attention to how I felt and I said I was sleepy.

I ended up going home and basically crashing.  Tired, oh so tired.

Now mind you I can sit and program until my eyes crust over pretty much as long as I do it at home. 

Well, maybe not that long. 

But it's not the programming; it's all of the people that I meet and greet; many  of whom I appreciate and like a whole lot.

This experience does make me wonder how long it will take me to recover from the effects of the drugs.  I should be over them by now.  I'm not.

Saturday, September 4, 2010

Another day of freedom

It is not quite a week from when I last saw my oncologist and I am starting to get used to the feeling that I might be well once I get over the final depredations of the drugs.

I still have headaches and my neck is still stiff and behaving oddly.  My muscles don't feel good.

I am limiting myself to one cup of coffee in the morning to prevent my heart from having peculiar off beat thumps.

I'm usually brain dead or simply very tired by the time I get to the end of the week.

But it's nice not to have Mr Death tapping me on the shoulder and asking me if I have the time to take a walk with him. 

I remembered something today from July 2009 which was back just after I had started having headaches.  I was driving home from work and I had the feeling that there was a female presence in the car with me telling me that I would be OK that she would stay with me and protect me.

In all of this maybe that would have been one of the better things to remember.