B is the word.

By , on June 26, 2010

C Word

As predicted, I did leave the hospital Saturday June 19.  I’ve now been home for a week.  It’s Day 31, so I’m through my first month after transplant.

We’re going to the clinic twice  a week for the usual blood-draw plus followup with the transplant team.  My blood numbers across the board (red, white, neutro, platelets) are approaching the low end of normal.  I suppose my energy level and appetite are doing the same.  I am still on IV antibiotics, administered at home.  It’s a cool system:

My pal vanco

There is apparently air pressure in the bottle that squeezes the balloon with the vancomycin solution in it, causing it to flow when the line is uncapped.  It’s remarkably well-regulated:  it’s supposed to take 2 hours and it does.  I can keep the bottle in my pocket and wander around more or less normally.  I’m doing so right now.

So here I am at home getting better, slowly.  I am still bald, eyebrowless, eyelashless, and there is no sign of regrowth yet.  This is not a big problem but it’s rather symbolic of still being a Cancer Patient.  I think having a bald head makes it harder to regulate my body temperature too, i.e. I get cold and hot more easily.

  • Me:  Doc, how long until my hair starts growing back?
    Doc:  Two to three months.

Perhaps the most annoying side effect is in my sense of taste (hey, there are many fans of early Zappa).  I guess the mucositis and palifermin and all that cause the tongue papillae to wear down or lose their oomph or something.  In my case, I can’t taste sweetness at all.  Saltiness is also quite reduced.  Mostly, things taste sour.  The usual experience of loss of taste is actually loss of smell, when one has a cold.  We say “isn’t it remarkable how much of taste sensation when we eat is really smell.”  I am now experiencing the opposite:  I can smell just fine, but I can’t taste.  Let me tell you it’s definitely worse:  most of taste, as it turns out, is taste.  I made a chocolate milk shake, and it tasted mostly sour and bitter.  Maple syrup smells very maple-y, but doesn’t taste sweet.  Same with cantaloupe.  I made a nice loaf of no-knead bread and it tasted … sour.  Feh.  Meaty things seem to taste more like themselves than other stuff; also peanut butter.  This situation makes it hard to get excited about all the eating and drinking I am supposed to be doing to regain my health.

  • Me:  Doc, how long until my sense of taste comes back?
    Doc:  Two to three months.

Despite my almost-normal blood counts, I am still immuno-compromised.  I guess my brand new immune system is still immature.  This means I am on a form of house arrest.  I can’t mix with crowds, so no going to the store for example; I have been the main food shopper for the family, so this is a burden.  No athletic or musical events.  Food has to be well-washed and overcooked, especially meat.  Many kinds of restaurant food are verboten, i.e. anything with fresh vegetables.  (Pizza is OK.)  In the kitchen counters have to be wiped down with bleach solution every couple of days.  I have to have my own special towels in the bathroom.  Everyone entering the house has to disinfect their hands.  On and on.

  • Me:  Doc, how long do we have to do the immuno-compromised regimen?
    Doc:  I think you can figure this one out by now.

As of a few days ago the kids are now on summer break (Seattle schools run late into June).  For now they are engaged in classic summer loafing-about-the-house behavior, enjoying having nothing to do.  I am in pretty much the same boat, but it’s rather less enjoyable when it’s enforced idleness.

Fortunately I have the World Cup for distraction.  Go USA! Uh, go Ghana!

7 Comments to “The boring part”

  1. =JeffH says:

    “trying to have quality time with teens: kinda like planning for sunshine in Seattle”

    indeed, how apt. U da mahn!

  2. Lucy says:

    Africa! Africa!

    Somewhere I still have the smell-o-vision card I got when we screened John waters “Polyester” back in the day. Pretty much everything on the card smelled nasty.

    If you can’t taste, you can always read about food:

  3. rlbob says:

    =JeffH: Well, yes, I have been baking (most recently Reinhart’s Multigrain Extraordinaire, see http://pinchmysalt.com/2010/05/31/bread-bakers-apprentice-challenge-multigrain-bread-extraordinaire/ ). I guess that goes without saying. You probably know about trying to have quality time with teens: kinda like planning for sunshine in Seattle.

  4. =JeffH says:

    Not only Zappa, but early John Waters, too.
    So isn’t now the time make bread, have quality time with the family, and mess around with household chemicals and radium filched from old clocks… ?

  5. Bonnie says:

    glad to hear you are better

  6. caren cascio says:

    Hey Bob, always thinking of you and so glad to hear you are approaching “normalcy”!

  7. Asbed says:

    Well, Argentina looks like a well oiled machine. I don’t know how Germany’s going to get past them…

    The US team’s tenacity won my zeal for a few days and I was rooting for them as well, until Ghana. Now this Ghana-US thing is building up to an international rivalry and so far it’s left a … sour taste … in our mouths.

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