Mother Jones
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“Flu-like symptoms” my ass.
The last couple of days have been a horror story. On Thursday afternoon, out of the blue, I started having intense lower back pain. Then it got worse. By late evening it was bad enough that I took some morphine, which had very little effect. It got worse through my sleepless night. More morphine at 2 am, then more again at 7 am on Friday morning. At that point, the pain was so excruciating that I wanted to head over to our local ER, but unfortunately Friday was the day we were scheduled to go to LA to have my Hickman port installed for the stem cell transplant. Marian, thank God, insisted on us doing the right thing: driving to LA regardless and getting help there. (On the bright side, Good Friday traffic was light.)
I was practically writhing on the floor for the hour after we got there. Eventually I was taken back to prep, and the doctor tried IV morphine. It had only a minor effect. Then he gave me several IV infusions of Dilaudid, and that did the trick. I was still in pain, but it was tolerable.
Unfortunately, our timing was bad. The Dilaudid was wearing off just as the surgery to install the port began, and they could give me only a limited additional amount until it was over. So the surgery was a horror story too, even though the placement of the port is basically pretty painless.
Long story short, all of this might have been the result of my Neupogen injections, which make my bones work overtime. But my doctors all agreed that although back pain is a common effect of Neupogen, pain of my level was very unusual. Alternatively, all of this could have been due to a pathological fracture in my lower back. A CAT scan ruled that out, thank goodness. So we still don’t know for sure what was going on. But after a very bad day and night, apparently the Dilaudid was the right painkiller, and I woke up in the hospital Saturday morning feeling surprisingly good. I would have given long odds against that Friday night.
So….very mysterious. And for me personally, a whole new definition of pain. Hopefully it won’t return.
Need a silver lining? As bad as it all was, it was apparently a sign that the Neupogen is working. Routine bloodwork shows that my white cell count is high and getting higher. Hooray! That’s what we’re hoping for.
On Monday we start putting the Hickman port to use. I will be up at City of Hope for 2-5 days while they extract stem cells and then process them and freeze them. If I’m producing lots of stem cells, they’ll finish up in a couple of days. If I’m producing a weak stream of stem cells, it may take as long as five days. Cross your fingers.
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