Maintenance Begins... (5/2/09-post date)

And I thought this was going to be the easy part...

After the Treatment

So, I was very much looking forward to maintenance. After all, I had already been through the worst... 

• Induction - 26 days in the hospital and a few weeks recovery
• Two Consolidations - only a week in the hospital with a few weeks recovery.

And with that done, my Leukemia was in remission (as verified with that Bone Marrow Biopsy a month ago). 

So on to the beginning of recovery! 

• Maintenance - a year long period of taking drugs that make sure the APL stays gone... 
  

Maintenance Begins

For Maintenance I am taking three (primary) drugs.

• Vesanoid - Four pills twice daily, but, only for two weeks every three months.
  
• Methotrexate (Trexall) - Four pills, once a week
  
• Mercaptopurine - Two pills daily.
  

Well, Vesanoid is an old (and apparently sometimes fatal) friend. But the other two were new. With new drugs come new reactions--and these knocked me out...

Saturday, May 2nd

I got up, had a nice breakfast and tried out my new drugs. It was weird not taking Vesanoid, the miracle "cure-all" drug that makes this Leukemia one of the easiest to treat. 

My daughter has wanted to plant some vegetables, so we went to a local nursery and picked some up to try a little container gardening. I of course took it easy as I was still not quite up to snuff, but we had a nice outing. I was out of energy and stayed in the shade while my wife and daughter planted the plants. 

And it was then time for lunch. By this time I was feeling a little weird--and after lunch I lay down for a nap. 

I napped until dinner, got up, and then slept another 12 hours.

Feeling Poorly

These new drugs sapped me of energy, gumption, enthusiasm and any general feeling of well-being. And it was no better Sunday, or Monday, or Tuesday. They laid me low-the better part of every day was spent in bed either asleep or awake but too tired to be anywhere else.  

The Mercaptopurine targets cells that reproduce often, like blood cells, but that also means your Gastrointestinal tract. So on top of feeling out of sorts in the head, and feeling weak, my stomach was a wreck too. On Tuesday, I even had a near gallbladder attack--it felt like one, but did not last very long so I am not sure it was one--but my insides were a wreck.

And then there is the part where I couldn't (and can't) see that well. It's frustrating as I don't find it that easy to read, or spend time on the computer. I think all of it was made worse mentally by the fact the rest of me was falling a part some of the time too.

I had not felt this overall bad through either of my Consolidations. 

Reading up

So, I read all of my drug sheets. My favorite line is probably...

Contact your doctor immediately if you experience... coma.

Coma--just there in the alphabetical list between chest pain and confusion. Well, if I experience it--someone will be calling--but it won't be me.

Conversations

So, I was feeling so bad, I spent some time trying to research through talking to people too--secretly hoping that someone would say I could just stop taking it. I called my Cigna RN, and she helped a little, but really she said what I was feeling sounded normal. I called my Doctor's office almost every day reporting symptoms, hoping they would reduce my dose or change my regimen.

Everyone just said I should ride it out and that I would get used to it.

I also called work--I wanted to let my manager know that my June 1st return date was too early, but that I hoped to be back my July 1st. Of course -- that all depended on me getting used to these drugs so I could be functional.  My manager, and my company in general has been nothing but helpful and supportive through all of this.  Sometimes you can feel a bit lost in a big company-but its nice to know after so many years standing behind it-they'll stand behind me. We had a great conversation and it meant a lot. And, it got my mind working and wishing i could be solving some problems there.

But I still had to solve my own...

Not Immobile

I don't want you to think I never got out of bed, or never felt OK. I did from time to time.

Usually my mornings were good until a few hours after having taken my pills.  My afternoons were spent napping or watching TV in bed out of my good eye (a friend lent me Buffy the Vampire Slayer -- the whole 7 seasons-- and I am still only in Season One).  Evenings were spent watching more TV--I just didn't have the energy for much else.

Doctor Friday

On Friday I had appointments with my doctors. 

First, I saw my cancer doctor, where they also ran a blood test. My white counts were down to 3.0 from 16.4 a few weeks earlier. Apparently yet another side effect of these drugs is low White Blood counts. They say my counts are not too low, but I still need to talk to them about it as it seems too low for surgery to get my port and gallbladder out.

And then on to my Ophthalmologist. It had been ten days since I saw her, and I thought I would be seeing better by now. She checked my eyes and the hemorrhages are breaking up, but the one in the center of my vision is not yet. So at least that's some good news. :)

Saturday May 9th

I only take the Trexall once a week. So I was not sure how I would feel taking it again. Was all my fatigue just from the daily pills-Mercaptopurine?

Nope--I spent much of Saturday laid up in bed again.

Sunday-Mother's Day

Sunday was Mother's day and I was not going to let all this stop us from going out and celebrating. Jen has been through a lot herself this year, having to take care of me through all of these and still keep everything normal for Anna, and she deserved even some small recognition that I could muster today. Anna and I did the best we could, cooking some (mediocre) pancake, drawing some nice cards for her, and giving her tulips.

But the big question was whether or not we could work out a nice meal out. The place we had reservations for was for Saturday night as they were closed Sunday--and I just was not well enough Saturday. In the end, we have a rain check on a nicer meal, but we had a nice Mother's day lunch out at a pub. I just loaded up on Rolaids and Immodium and all was well.

It was a turning point

Monday - that's today

I woke up early and went for about an hour's walk. I was slow, but methodical, and covered good ground by the end of it. It was great to be moving again after a week spent mostly languishing away in bed and on couches. 

After breakfast I mowed the yard and did a few other small things out there.

And somehow, even though I still felt the effect of the drugs--and still slept some of the afternoon--it was easier to push through them with something to do.

So, I am going to keep trying to do things--push through the problems--and overall hope to do better than I have been.

That's really all there is to do.