I got some good news the week
before last I’d like to share, but I want to walk through the process rather
than just skipping to the end. By the
end of the post, you might wish I hadn’t, but as I’m starting, it seems like a
good idea.
It all started Tuesday
afternoon. I went to the hospital for my
first post-treatment MRI. I had gone
through phases of nervousness during the previous week because this was a new
experience, and one of the prognostic indicators was how I would respond to
treatment. If my tumor was resisting
radiation and chemotherapy that would be a fairly significant problem. But by the time I got there, I was just ready
to get it out of the way.
I arrived a bit early, had my
blood drawn, then walked down to the imaging center. It was about an hour before my scan was
scheduled, so I figured I would be there a while. It turns out I didn’t have to wait long there. Once they called me to the back, I had to sit in another waiting room, where they took away my phone, anything I had to read, etc. They took my warmth. This waiting room is so cold there were
penguins complaining and walking out. I
don’t know how long I was back there, but I asked the staff to check for signs
of frostbite since I was already at the hospital.
The actual scan was boring
and uneventful. The IV for the contrast
fluid was painful and uncomfortable, but the pain was gone before I got back to
the car.
The next day started off badly. The parking lot was so full that Eda had to
drive around thirty minutes to find a spot.
Halfway through, I had to leave to make sure I didn’t miss my
appointment. I got texts in the elevator
telling me she wouldn’t be able to make it.
I checked in and sat down, and she finally got there just after the
nurse took me back to the exam room.
Then the nerves kicked
in. I started wondering intently what
the scan showed. I couldn’t help
it. I just didn’t want to wait any
longer. Before my first day of radiation,
I had said I believed everything would be fine at least until I finished the
first year of chemotherapy. But the
seeds of doubt grow quickly. I couldn’t
wait to see any longer.
I answered about a hundred
questions, I think. “Any loss of
vision?” “Any numbness or tingling?”
“Any falls or dizziness?” “No,
no, no! WHAT DOES THE SCAN SAY?” I finally got through the intern’s battery of
questions and neurological screening tests as I waited to see the oncologist. “Do
you have any more questions?” she asked. “Yes, I just want to know what the results of
the MRI were.” She pulled a sheet from
the top of her notes and read it to me word for word.
And the news could not have
been better. It was written in a foreign
dialect that was a bit strange to me, but I had my own personal medical
translator there to decode it for me.
Stable. That’s the word I wanted
to hear. And I got it. That was enough, but
wait! There was more! The doctor started talking to us about the
genetic makeup of the tumor and how they just had received info back regarding, and
how there was a specific genetic marker that they find in a small percentage of
them called IDH1. When they look back on
these compared to those without this gene, the baseline life expectancy
doubles, and “almost all” the long-term survivors have the same marker. In my estimation, that puts me in good
company, and I haven’t seen my wife that ecstatic in years. The doctor went on to say it was not a
guarantee, but it didn’t matter because I heard all I needed to hear for the moment as
did my wife! We are not out of the woods
and prognosis still isn’t what I expected of my life, but this news was
fantastic and we are celebrating the positive – stable tumor and IDH1 being
present in the tumor they removed.
We walked to the car having
totally forgotten about how hard it was to park. When I got home, my door was decorated with wonderful post it notes with words of encouragement on them. Thank you to all of you who took time writing me notes at the benefit.
Unfortunately, the story
doesn’t end there. I grew up having the
old cliché drummed into my head. No
pain, no gain. And that’s where the
first round of high-dose chemotherapy comes in.
The first morning after taking that was brutal. I added a second dose of anti-nausea medication,
but it was too late.
The next few days, I was able
to preempt it, but towards the end of the week, it hit me in the middle of the
night and stuck around until
morning. Apparently the sounds reverberated
through the house. That’s embarrassing,
actually. I don’t mind taking what it
gives me, but I would rather the battle be my own. I didn’t really mean to share it. I realize the irony of what I’m writing here.
For anyone not familiar with
my schedule, I take the medicine for a week and then get a twenty-three day
reprieve for the next year unless there is a change in the MRI (but we won’t
talk about that). Then the dosage
ratchets upwards again. My next appointment is November 27th, where they will check my blood to see how the counts are doing for chemo. My next scan will be in December.
The positive
thing here is the gain. If it takes a
miserable week to get through, then I’ll handle the miserable week and get
through. I can do that, and if I’m
really good, I can get through without complaining. There are life lessons here, and I’m learning
them. And life will go on.
Hopefully the prayers are
still forthcoming and some directed prayers are listed below:
- That the next
round of chemotherapy is manageable and effective.
- That I find the
strength to overcome the fear of the future and do my best to provide a strong
example for my family.
- As we enter into
the Christmas season we are able to focus on the positive things that 2013 has
brought our way and our appreciation of time spent with family and friends
despite this obstacle.
- Give thanks that
I have been able to cope mentally and physically as well as I have. I certainly could not have done it by myself.
- Prayers of thanks
that the tumor currently is stable with no new growth.
- Prayers of thanks
to all those who have been blessing and continue to bless my family with
donations, letters, and mass cards. We
are truly grateful and appreciative of you all as we enter the holiday season.
