First, let's see if you've been paying
attention. Last time I wrote about Kappa and Lambda light chain
proteins.
At my clinic visit this week, I found
out that the light chains are going back up; this time from 18 point
something to 21 point something else. Now, light chain proteins going
up are a) Good; b) Bad); c) What's a light chain protein?; d) I went
out with a Kappa Lambda in college.
I know most of you got it right. The
number going up is bad, especially since the medical regimen I'm on
right now is making me feel poorly, as my Aunt Jessie used to say. I
mean, it's one thing to feel tired and kinda nauseous all the time
when you are having some success, but another thing entirely when
what you're doing isn't even working.
So, we had something of a group meeting
about it when we were at the clinic. Interestingly enough, I missed
it. Sheri had arranged to talk to our oncologist in Augusta alone for
a few minutes at the end of our session. During the visit, we had
discussed a number of options and agreed our doctor would contact the
Boston oncologist who is really the big dog that oversees my care.
Well, I left so Sheri and the doctor
could talk. Never being one to let things wait, though, after I had
gone out to the car to sit and wait, our Augusta doc got on the phone
with our Boston doc and the two of them, and Sheri, were able to
discuss what to do next.
Do you think I should have felt
indignant at having been left out? Remember, these are the three
people in my life who know as much, and in some cases way more, about
my multiple myeloma than I do. So, why would I feel indignant? I was
just impressed that no time was being wasted and we had a solution in
place while I was sitting sipping Sheri's cold coffee in the car
while working on lies to tell her about how I actually hadn't been
drinking her coffee. She does not like ANYONE messing with her
beverages.
So, here's where we are now. I'll
continue to take the chemo and dexamethasone as I have been, but we
are going to add another piece to the puzzle: Velcade, which is the
first therapeutic proteasome inhibitor to have been tested on humans,
an explanation which certainly comes from the “aren't you glad you
asked” department.
I have actually been treated with
Velcade previously. Before my stem cell transplant, it was added to
the mix I was taking at the time. At that time I took it through an
IV, but this time it is going to be in some sort of capsule form. I
prefer the capsule, mostly because an IV means sitting in the
treatment chair for about two hours, between getting it set up,
getting me set up, administering the Velcade and detaching after
we're done. The other way, I just take a pill, Jill, and I'm done.
I won't start the new protocol for
another week, so we'll see how it goes.
In the midst of all this, I found
myself thinking about my daughters, Jennifer, 47, and Alison, 44.
They live quite a distance from here, so most communication is by
Facebook, email, or phone.
When I first found out I had cancer,
one of the tougher things to be done was to get on the phone and tell
the girls (don't care how old they are, girls is what they will
always be to me) to tell them. At that point, I said I would never
evade the truth (also known as lying) as far as my health goes. Good
or bad, I would let them know.
And that's what's happened, But Sheri
noticed that as I was avoiding whining and complaining about my
health, I wasn't painting a totally accurate picture for Jennifer and
Alison.
I thought about that, and saw she was
right, as she so often is. So, when we talked on Father's Day, I took
the time to tell them that I hadn't been feeling good and that I was
tired all the time. I also broached the subject about quality of
life. Look, I'm not on death's door by any means, but I do have to
make decisions like the one we just made about the latest treatment
plan.
We had a really good conversation and I
think they probably have a better handle on how I'm doing: good, but
not great.
So, now we all head into this new round
of treatment aware of the situation that we are fighting and what to
look for in the results. Remember... light chain proteins up... what
is it brothers and sisters? That's right, bad. Now you have all you
need to know to track our progress. Good job.
There are a variety of versions of
the story that gives this blog its name. The pony is the constant in
all of them. A man is on his way to a party when he comes across a
young boy shoveling ass over tea kettle at an enormous mountain of
manure. The man asks the child if he wouldn't rather go with him to
the party than shovel all that poop. The kid says, “No way man.
With all that poop... there must be a pony in there somewhere
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