Saturday, January 16, 2010

The Not Pretty Part of Life with Terminal Cancer

So I shared with my facebook friends the good news that the chemo
seems to be working, which we learned yesterday when the results of
Wednesday's CT scan came in. But honestly, the news is much more of a
mixed bag than that. So here's the full report. If you are looking
for pleasant, cheerful, distracting news, stop here and just focus on
the fact that yes, the chemo does seem to be working.

Joe is horribly, horribly ill. In addition to the spinal cord injury
and the cancer, he has now developed a nasty pressure wound on his
backside. He had to stop chemo until the wound is dealt with - and we
won't even see the wound surgeon for an initial consult until the 20th
(the wound got to the point that we were told it would have to be
surgically dealt with by the end of December, but surgeons who
specialize in this are few and far between, apparently, and the 20th
was the earliest appointment).

His rehab doctor told him his wheelchair (same one which still hasn't
been approved by insurance) is exacerbating the wound so he should
stay out of the chair. Of course, since he can't stand on his own or
walk much without a walker and a spotter, that means he should spend
most of the day and night in bed - which is actually a very bad place
to be, generally, when you're ill, because it causes increased
debilitation and more potential for pressure wounds in other spots
(that's why they call them bed sores, folks). By a week ago Thursday,
he was having excruciating pain in his left leg and didn't get out of
bed at all Thursday or Friday. I got the wonderful cousins to come on
Saturday and help me get him out of bed and washed, but he spent all
day Sunday and Monday in bed, again (well, Monday, there was a wound
care specialist nurse in - whose recommendation was that the surgeon
see him sooner - which the surgeon's office said was impossible).
Cousin Liz (Professor Doctor Nurse Liz) thought I should get him to
the oncologist, since the leg pain wasn't making sense and she thought
the oncologist would have a better ability to see big picture than the
rehab doc. By Sunday night, Joe was having night time fevers (that of
course, disappear during the day when the medical professionals are
around). I was able to get him in to the oncologist on Wednesday.
Liz was right. Our oncologist is wonderful.

Of course, transporting a wheelchair bound, debilitated adult in a VW
Jetta with only me to do the assisting, lifting, breaking down and
putting together wheelchair duties is no fun. His CT scan was already
scheduled for Wed., but oncologist took blood cultures (the wound is
clearly infected, but she wanted to ensure that the infection hasn't
entered the blood stream - it hasn't) and wanted him to get an x-ray
and a doppler of his legs (he has a history of DVT's and he has been
hanging out in bed, which is not good for someone who is prone to
blood clots). She also weighed him (as she does every appt.) and his
weight is now 126 lbs, compared to 156 on December 30 and about 215
this time last year. We made it through the CT scan (took several
hours because of general busy-ness of the hospital and the need to
drink the dye stuff over the course of one hour) but the transfer from
the chair to the CT scan bed was terrifying to Joe so when we got to
the ultrasound lab and they said he needed to transfer again, he flat
out refused (luckily, he has filters in place, so while the blood clot
will cause pain in his legs, it's not likely to travel to his heart
where it would be really dangerous). I was beyond upset, though,
because the tech cheerfully said "Come back any day for the test" and
I'm thinking "how the h*** am I going to get him back here on another

It took 25 minutes for me to get him into the car. If you are in
Phila and were trying to travel down 10th Street around 3 p.m. and
were stuck in a horn honking traffic jam - that was me, trying to get
Joe D back in the car.

He continues to have nighttime and late afternoon fevers (last night
it got to 102.6). The oncologist said that if he'd had a fever in her
office, she would have admitted him on the spot. (Cousin Liz says
next time, have him sit on a heating pad before I take him in). The
oncology nurse said Tylenol and if after a day of Tylenol, his fevers
are still passing 101, bring him into the emergency room. Yeah,
right. Joe has already said he is never getting into the Jetta again.

I don't even want to mention the bowel incontinence issues - or the
difficulty this non-medically trained, doesn't like the sight of blood
on her own body, legal type is having with the dressing changes of a
wound that is "necrotic." Or the impossibility of getting food into

I have ordered a private ambulance to take him to see the surgeon next
week. Not cheap, but what other option is there?
Joe's paid leave has run out. He has applied for early retirement -
disability (the only option that allows him to keep his insurance).
My tenants have yet to send me their rent for this month (they say the
check is in the mail). The wonderful gift of a woman to do laundry
and clean that was given to me by the 2nd grade moms has ended (she
returned to her home in Peru).

So yesterday afternoon, as I was contemplating how to convince
someone, anyone, to put Joe back in the hospital, we had the call from
the oncologist saying no blood stream infection, and while some tumors
have increased in size and most have not changed, the largest mass has
decreased enough that there has been an overall reduction in tumor
size - which means the chemo is "working" and as soon as the wound is
cleared up - he's in for more doses.

And the call from the lady at Social Security saying his claim for
benefits was approved (she'd told me it would take 3 months - it took
3 weeks).

Oh and JR wants to grow up to be a cheeseball maker, so that if
any fall off the conveyor belt, he can just pop them in his mouth.
Either that or a Lego designer.

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