More time in the hospital
day later, I was getting blood drawn so that a doctor could assess my
condition after the trip.
The day after that, the doctor looked at my blood results and examined me and put me back in the hospital again to
recuperate from the trip and to get started towards a treatment for my
circumstances, I landed in U of
M Hospital. They
began to draw blood and make plans to do more biopsies and get some more
bone marrow and all the same types of things
that went on in Knoxvilleís Fort
Doctors, interns and nurses all came and went and poked and prodded
and drew blood and asked to hear the story from the beginning over and
over and over incessantly.
after I was admitted, the U of M Hospital business office called me in my
room to inform me that they didnít take my insurance (CIGNA) and that I
was basically on my own financially.
I made the decision to stop everything in itís tracks, get
transferred to a facility that DOES take my insurance, and start over one
I'd gone through weeks of testing, prodding, poking and all that in
Knoxville. My arms and hands were roadmaps of big purple bruises and
scores of needle
marks from dozens of blood draws, IV's, transfusions and such. I
looked like the worst needle junky in any movie you might have ever
Now, U of M wanted to start the whole testing process over, and I just
knew that in short order I'd get transferred to another facility because
of the insurance thing and that new facility would want to start over yet
again. Everyone likes to have their own test results. I looked
at my arms, thought about the Cat scans, X-rays, and all the rest and
said, "No way I'm doing this more times than I have to!"
So I decided to skip the series at U of M and get the hell out of
there. I let my support team know my intentions and they went into
My support team, you ask? Oh... Yeah... Real quick...
By that time, I had assembled my support team. Actually, they pretty
much assembled themselves, taking on the responsibilities they are most
familiar and comfortable with. My support team consists of my family
and friends. My sister Candy has been involved in the Insurance
business for many years, so she's all over that. My sister Trudy has
a medical background and has a nose for sniffing out any kind of hidden
benefits and money from social work type areas, getting through bureaucratic
red tape and getting things accomplished in short order against tough
odds. Mom's there for me emotionally and to help coordinate
schedules, get me around, find things I need or just crave. My
step-mom is my other emotional and home support team member, cooking
meals, doing laundry, shopping for me and taking care of my general home
needs. My friends give me much needed encouragement. Together
they are a group of people that are absolutely indispensable to me.
The Knoxville doctors were right - I couldn't do this without them.
I have no way to ever thank them enough, and I love them all.
So, anyway, my support team went into action and I
ended up in St. Josephís Hospital later that day, but there was a bit of
a snafu. It seems the doctor
at U of M had not intended to let me go as soon as the nurse did.
I ended up in the waiting room of St. Josephís for 3 hours while
Candy worked with the 2 hospitals to clear the way to get me admitted.
Meanwhile, I was again wasting away without care till my head
literally bobbed on my neck like one of those drunken little spring-headed
dogs in the back window of the car in front of you at the stop light.
working the admissions desk seemed to have had his job all of about 10
minutes and was totally lost beyond being able to look at a piece of paper
we didnít have to get a number we didnít have to put into his computer
to make the wheels in his world turn and get me into a bed. No paper, no number, no wheel turning. The poor guy was at a total loss for what to do about it.
So I waited 3 hours while Candy made phone calls, paged doctors and
nurses, made demands and got out bigger sticks to get someoneís
nurse came out and, with a few harsh words to the admissions desk, wheeled
me to a room at the end of a hall, put a gown on me and put me to bed.
From then on I had nothing but A-#1 treatment from everyone there
at St. Josephís.
At U of M I felt like a number and a lab experiment for all the
wanna-be someday doctors drifting in and out of my room along with the
real doctors and nurses, poking, prodding, listening to heart and lungs,
sitting me up, lying me down, rolling me over, sticking me with needles,
asking me questions I couldnít hope to answer, like why had I been
prescribed this particular drug?
changed at St. Josephís and I DO mean noticeably.
I was VERY well taken care of by everyone there and I felt it from
start to finish. They cared
about me personally and it showed.
did something about my discomfort and needs too.
For one thing, they got that big belly off me with a drainage hose.
I heard they took 7 liters out.
What a relief that was! And
they worked on getting the balloon legs, feet and toes to start going down
with drugs to make me urinate it off more quickly.
With every single day that went by I could feel myself getting
stronger and better. They
were turning me around to the positive in no time and it felt great.
My appetite increased to the point where I was not only eating
everything they brought me, I was eating anything else I could get someone
to bring me from the cafeteria or vending machines, like donuts,
strawberry shortcakes, ice cream, chili, salads, anythingÖ I was hungry!
The next thing they did was wheel me down to a little surgical area and
take a couple of lymph nodes from my left groin area. That was on
Friday morning, 11/9/01.
The Oncologist explained that there are many types of NHL and that he
needed to find out precisely which one I have so that he could tailor my
treatments to it in particular. He explained that the biopsies would
be back on Monday and he'd make a plan for my treatments then.
He also let me know that the information obtained so far showed that one
of the aspects of my particular NHL indicated that I could start treatment
that very day, Friday, 11/9/01,
so I got my first treatment. It's called Rituxan.
First they gave me a couple of Tylenol, then a shot of Benedryl through
the IV, then they start dripping in the Rituxan just a little at a time and then
slowly increase it. When they increased it though, I suddenly got so
sick it was scary. It went like this: I feel kinda warm all of a
sudden... 30 seconds later I'm sweating like I just ran the marathon, I'm
gonna upchuck everything I've eaten for the past week, then I pass
out. Just that fast.
Well, as soon as I started to feel warm, I told mom and she said to hit
the nurse button so I did. The nurse came right in, took me off the Rituxan
and hit me with more Benedryl through the IV. I think I was
out for a couple of hours, though the Benedryl kept me pretty groggy the
whole time. They increased the dosage as we went along and even went
past the amount that made me sick the first time and I felt no other
discomfort at all. Maybe it was just the initial shock of the first
time that my body had to deal with it. I'm interested to see what
happens on Friday when we repeat the treatment.
On Monday, 11/12/01,
the biopsies from the lymph nodes they took came back and the Oncologist
told me that he now had a handle on which particular NHL I have.
It's an indolent (slow growing) lymphoma and because it is in stage 4 (in
my bone marrow) he believes I've had it for some time now without
knowing. He also has a plan for treatment, and off we go.
At this point, the doctor's plan is to give me the Rituxan
4 times, once per week, and then move on to
chemotherapy to continue the fight.
downer the whole time I was at St. Joseph's was a visit was from a
counselor that came to help me deal with the stress of finding out I had
poor guy probably has to deal with a lot of people that are really bummed
out at the news that they have cancer or some other debilitating
disease. I'm sure some get pretty grim news about their particular
circumstances and chances of survival. It's gotta be a tough
job. I wouldn't want it.
He offered me
antidepressants, and told me there was no shame in using them.
I declined, as Iím not depressed.
He didnít seem to believe me, and we speculated as he left that
he was convinced I was in denial. We
(my support team) had a little laugh about that, and I suggested that he
might need the antidepressants himself.
Before he left, I let him know that, while Iím not depressed now,
if it comes up later, I will take whatever measures are advised to
combat the problem.
said she had some videos for me to watch about cancer as well, so we
watched one. It was about 20
minutes long and one of the most depressing things I ever saw.
There were these poor people that were angry, depressed, cried, and
a whole range of downer emotions over the fact that they had cancer.
And they wanted me to know that itís normal to feel those things. All I could think of was that Iím glad I donít.
I let everyone know that I expected during the course of my disease
and treatment that I would encounter ups and downs, good days and bad, and
so forth. I consider them
part of life. I will deal
with them as I encounter them as best I can and use whatever tools are
available and recommended as needed.
When the time comes. Not
to watch any more videos unless they were informative videos that could
tell me what to expect from a clinical standpoint of the cancer or
chemotherapy or something like that.
Tell me about T-cells or B-cells, tell me about treatments, but
save the ďlife with cancer is the most terrible thing that could
happenĒ speeches for someone else who already believes it.
Iím making other plans to stay as upbeat as possible and live a
long life kicking my cancerís ass rather than the other way around.
If it doesnít go that way for me, at least Iíll have given it
my very best effort. Iím
not giving up at the outset of the battle. Iím at least going to make a damn stand against it before I
give in to a dopey smile that comes from a handful of happy-pills.
rest of my stay at St. Josephís was great and they got me stronger by
the day and in a week I was back home and walking around the house without
using a walker or wheelchair. That
Next: Home again and feeling better