followup 3 mo

I had my 3 month followup visit today with my oncologist. 

I'm doing pretty well, I just have a fatigue issue and I'm having a difficult time building up stamina so that I can walk further and exercise more.

My issues are: fatigue, headache from the neck muscles at the back of the neck and very slow healing.

My white cell count was 3.7 which is some improvement - my filtrate level was 2.3 which is also some improvement.

So my immune system is still nothing to write home about but it's a notch up from where it was before.

I will be back to see this doctor again in another 3 months.  I will get another CT scan the same day and if it is all OK will probably have my port removed.

Taking Stock of My Status A Year Later

It has been about a year since the biopsy and there is quite a difference between then and now.

It is nice not to have cancer anymore although since it might come back the thrill from that prospect does not have the pleasure that it probably should have. 

And my neck doesn't feel normal.  It cracks a lot when I move it and I can sometimes sense that some of the muscles feel that they've been pulled. 

I wonder how my C2 vertebra is doing.  Did the part chewed out by the tumor ever fill back in with anything?

Occasionally I take a pain pill for headache and neck strain.  

Otherwise I'm more or less in good shape.  I have to diet or something to deal with the weight gain I experienced during chemotherapy.   My blood sugars run high but not enough to worry about.

I am walking about once or twice a week.

My thyroid medication is finally at a comfortable dose.

I still have episodes of tiredness and I do not know how much my immune system has recovered.  It was just below the minimum values for normal in early October, but considering that I took my last dose of Revlimid August 3rd I was hoping to have it back by now.

I feel that I am on a plateau slightly below normal standards.  Still occasionally tired, and my immune system not quite back yet.

But my dose of Levoxl is good!

Old Notes and Further Nostalgia

I sent this note to my family doctor on 11/25/2009

It has been an interesting couple of weeks all things considered.  The biopsy included half a tonsillectomy free of charge.  Over the last couple of days I have noticed that I now have cramps further down the muscles at the back of the neck closer to the right shoulder as well as where I used to have them before on the side of my neck.   I thought it was worth mentioning because it is a change.  I was unable to sleep in our bed last night, I ended up on the couch sleeping in almost a seated position.  Not the most comfortable way to sleep.   Thanks,

Obviously, I can't keep my dates straight - I had thought the biopsy was later.  But it was in November and we are either sitting on the anniversary today or or we are right around it.

It's always nice to remember these big events - my tonsil going missing; the lousy sleeping arrangements.  I almost think I should do something to celebrate - have a glass of wine or something.

Back then, with all the funky drugs I was on, a glass of wine would not have been an option.

I'm being maudlin - Here's a little nostalgia

Here it is November and it's about a year ago that I had the CT scan that showed my first visible tumor. 

A lump had shown up on my neck that it turned out had nothing directly to do with the tumor that was at the back of my neck between the muscle wall and those great blood vessels that service the brain.  The scan showed that my tumor was eating into one of my vertebra - the C2 vertebra.

This was on the right side of my neck and the ENT that looked at it could see the bulging out on the back and right side.  She sent me to get the CT scan.

It took a week or two to get a CT scan and my ENT wanted me to get back to her the same day with the results.  I think she had suspicions.

Once you know you have something it suddenly seems to take forever to get to the next test; and the next test for me was a biopsy.

Mary and I went to the outpatient clinic where the biopsy was going to be performed and they wanted me to bring my living will if I had one.   That is a really weird request to get from someone.  Think of the possibilities.

This is not a simple: here let me stick this needle into you.   This was a throat operation.   My ENT (who sidelines as a surgeon) excised my right tonsil to get to the mass.  Good with a knife that one.

She told me afterward that she wanted to get enough out so that she wouldn't have to go back in to get more.

Soon I will be having another Thanksgiving dinner - I was on drugs for the last one; I stopped the muscle relaxants so I could have a couple of glasses of wine with dinner.


The biopsy was in early December and the diagnosis of lymphoma was in mid December.   I saw my oncologist for the first time the Monday after Christmas and had a series of tests.

My first infusion was New Year's Ever 2009.  What a way to celebrate.

Way post chemo and when will I get better?

It has been a while since my last checkup, adding some electrolytes to my diet and ingesting a lower dose of my thyroid medication every day.  My metabolism has slowed and I have had a bit of weight gain.

I guess that fixes the big stuff, but I have to ask:  when will I be better?

I still have the occasional bad day, can't over extend myself very much and in general have not gotten over the effects of the combined R-CHOP and Revlimid.

I don't feel bad, I just can't do very much.

I guess I'll spend a lot of time around the house?