The New Normal

OK--last post took us up to Bob's first treatment on the 31st.  It's now Sept. 8.

Things are going well.  He's on two drugs.  One is oral (4 big pills a day) that he takes all the time.  The shots he gets for 7 days (with a break on weekends) and then a couple of weeks off.  During the time "off" he goes in twice a week for blood work and evaluation.   He's finishing his second round of shots tomorrow.  He'll do a few more rounds and then go to Shands for another evaluation.

And this is our new "normal."  We go in either every day or every three days, for 2-5 hours depending on whether or not he needs a transfusion.  Transfusions are normal--have to replace the cells the drugs are killing off.

The clinic is pleasant.  The nurses are all very nice.  If it's the afternoon, there are volunteers with a tea cart--coffee or tea and cookies (sometimes homemade) and if you're lucky, cupcakes from a bakery).  Usually there's a therapy dog visiting (we've met six of them so far.)  If we're really lucky that day, we're in treatment pod #16 - tucked in a corner with a window overlooking trees.  We settle down--Bob in a recliner and me in the chair -- with our tea and cookies and books.  When he's finished, we might do a little shopping and then head for home.

Normal.

We do count our blessings:

This was caught relatively early.  In fact, it's not even officially full-blown leukemia.  It's a precursor (myelodysplastic syndrome) which is basically leukemia but just not quite as bad yet.

We have financial security.  Insurance is covering most of it, but there are a lot of copays, and when he goes to Gainesville we'll be renting a place for him to stay (there is a Hope House there, but it sounds like it's basically a dormitory -- we'll get something a bit more private).  We'll also be paying someone to house-and-critter sit, and covering expenses for the friend who will help stay with him (he needs to have a full-time caregiver for three months--so, our friend Kim will switch off with me there as I run back and forth to check on the house and critters)

We can get this initial treatment in town.  The clinic is about 45 minutes away--but there are people who have to drive for hours for their treatments.  Even when he has to go to Shands, that's only three hours away.

We genuinely like his doctor and all of the nurses.  They're very caring.  When we're in the waiting room, it's common for one (or more) of them to come out and sit and chat to see how he's doing.

Bob is healthy.  That sounds weird to say about someone with cancer (again, "Other than that, Mrs. Lincoln . . .").  But his blood pressure is good, his blood sugar levels are good, his cholesterol count is good, etc. etc. etc.  He's in good physical shape.   The drugs aren't bothering him.  We feared extreme sickness, mouth ulcers, not wanting to eat, not worrying about keeping his hair out of the way when he was throwing up because his hair would be gone - and none of that has happened.    He gets tired easily (his hemoglobin count is less than half of what it should be) but otherwise feels OK.

The oncology nurse said he's a rock star.


Of course, there are inconveniences.  We have to be careful eating out--no salads, nothing raw, no buffets, nothing where the food has been sitting out (which sadly means giving up our little Mexican tienda for awhile).  We're on a well--even though the water is fine, the protocol is that well water needs to be boiled.  So we boil--a lot (he needs to drink at least three quarts a day to keep the toxins flushed out, and he does--which probably contributes to his rock star status).  We've adapted--it's easy enough to put the kettle on anytime we're in the kitchen and fill a few mason jars to put in the fridge.

He can have salads if I make then.  Anything raw has to be soaked in a vinegar/water solution.

I give a Ham Sandwich as an example.  Old protocol:  put mustard on bread.  Get ham from package and put on bread.  Grab a handful of lettuce and put on bread.  Put on a top piece of bread and eat.
New protocol:  put mustard on bread.  Put lettuce in salad spinner and cover with vinegar/water.  Get ham out of package--put in skillet to frizzle (have to be careful of food with a large surface area).  Put ham on bread, dry off lettuce and put on bread, top and eat.  Wash skillet and salad spinner.

But I'm so willing to do this.  I though there would be a massive amount of food limitations--there's not (it helps that we have always tended to have a rather healthy diet).  No rare meat, no undercooked eggs (sigh--no more putting a fried egg on top of almost everything for that lovely running yolk to make a sauce).  No alcohol.  Exercise caution eating out.  Oh--and no good cheese.  Another sigh.  Grocery store cheese is OK--but no blue cheese, or soft runny brie - basically, no cheese that's still alive.  But that's about it.

Speaking of which--it's lunchtime.