First Scan

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:

1. That the next round of chemotherapy is manageable and effective.
2.  That I find the strength to overcome the fear of the future and do my best to provide a strong example for my family.
3. 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.
4. 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.
5. Prayers of thanks that the tumor currently is stable with no new growth.
6. 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.