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.

Outpouring Of Love

From William:

So we had a little carnival the other day.

That’s an understatement for dramatic effect.

I was thinking about what to write about the event.  Who do I thank?  What did people see?  What unique perspective do I have?  What did those who were unable to make it miss, and how do I convey the sense of what happened that day to them?  How do I explain the success of the day?

I’ll start with the people who organized the event and why they did what they did.  They heard about my diagnosis and realized that my family and I would need help.  There were lots of ideas that were bandied back and forth, and I don’t even think I was supposed to know about any of them.  I was supposed to know the date and the time and show up and be amazed.  And I did, and I was.

These kind friends have been there since the day I first checked into the hospital, and to talk solely about what they did for the benefit would be selling them very, very short.  That day was the culmination of what they could all do together, and it stands as a testament to their dedication and determination.  Once again, words fail me, but my appreciation goes way beyond just that wonderful day.

The idea behind choosing a carnival is an interesting and thoughtful one.  And this is all secondhand information, so if I don’t know the whole story, I apologize in advance.  I just want to say that I appreciate the organizers taking me and my interests into account.  As I understand it, they tried to think about doing something football related first.  After some difficulties there, they picked something even more important to me:  my kids.  What a winner that turned out to be.

The choice of the event was such a small part of what went into it, and that’s not to minimize the effort that went into choosing that.  I wrote someone this week that my creativity is so lacking that I nicknamed my daughter Boo Boo.  I never would have come up with a carnival, and even if I had, I don’t think there’s any way I could have made it work.  Not only did they make it work, they made it work brilliantly.  Everyone that showed up said, “Can you believe the turnout?!?”  I talked to at least a hundred people that day.  All of them said the same thing.  I hope it’s not because that’s the only thing I have to talk about. 

I just talked about the attendance, but focusing on that was not my intention.  It would have been great if just one person showed up to say, “I’m here for you.”  But the truth was miles away from that.  We don’t have an accurate count, but we estimate there being about 800 attendees.  The fact that so many people would show up to celebrate and support me and my family is humbling and uplifting.

I think everyone there would agree it was successful.  I have thought about how we measure that.  By money?  By attendance?  By weather? By effort in organizing?  All of those played some part, but I don’t think any of them alone—or put together—captured the spirit of the event.  I think spirit is something that really nails down what made the event so special.  It was a gathering of people there to show their love and support in any way they could.  Most, if not all, donated money, and someone bid on every single auction item.  Some said, “I really hope you know we’re here supporting you and praying for you every night.” 

I think that was what really struck me about that day.  There were people there who I’ve known all my life, for ten years, and people I met within the last year.  There were even people I met that day, but I got the same message from everyone: “We’re here to help.  You’re not doing this alone.  This battle is one you can win, and we want to make sure you do.”

When I got out of the hospital, one of the best things that happened to me was meeting some friends who have lived my exact story.  Mid thirties, young children, uncertain future.  And the fact that they’re friends means they’re making it.  It put my mind at ease when I could ask the questions I had and get answers from people who’ve been there.  People who told me the same thing I felt and heard that day at the park.  “You can do this.  We KNOW you can do this.  It’s not easy, but stay positive, and you’ll make it through.”  Every person there that day, and even ones who could not make it, showed that same supportive attitude of care and love.

The energy at the event that day was one of infectious positivity.  It’s been over a week, and people are still talking about it.  That’s where the positive aspect comes in.  People only write and talk about things when they love them or hate them.  I’m certain that the smiles and prayers and donations and everything mean you loved it.

I think all of us—me more than anyone else—owe a debt of gratitude to everyone who helped organize the day.  The team of organizers who gave hours every night for weeks, the contingency of St. Agnes volunteers who ran the booths, the donors of auction items, and of course the attendees who gave so much as well.  I’ll see you at the five-year reunion.

From Eda:

I am speechless!  Thank you to the countless hours that went into planning this huge and very successful event!  I will keep this short as I will thank you each individually, just give me some time... I am very behind.  I wanted you all to know how much I appreciate you all for making this happen.  I feel that each of you are angels placed in my life to help me walk and stay strong daily.  You have each been here for me in ways and in times that so many others couldn't be or weren't, so thank you!  You each know who you are!   

Thank you for all who took time on a weekend or squeezed it in between events to come out to my husband's celebration of life and to help us fundraiser and fight this cancer!  We will continue to strive to beat this and we know we cannot do it alone and this event proved to us we do not have to!  You all amazed us.  I couldn't believe how many people came out that were strangers and came out because they had heard our story or came out because they felt connected to us in some way.  I also couldn't believe how many people came from my past and present.  Thank you to those who made a very special effort to be there or to help who haven't even seen me since grade school or high school!  WOW!!!!! Thank you.  Many of you I did get to talk and many I did not, but I know you were there.  Many of you saw that just by your hug, you moved me to tears. I felt so graced by God's love during this event.  Thank you for showering my family with love with your support in numbers and I mean huge numbers!  We hope you all had fun.  I will keep my part short since William summed up so much above.  I know I am not alone and I know that each of you would help me out if I asked, so thank you for being there!  My heart is full.  The money raised is going to really help us so much and we appreciate your generosity to contribute to our need!  Thank you!  I know for each of you it is a sacrifice to give money, and please know we do not take that lightly and we are very thankful.  Thank you all for your love, prayers and continued support.  We could not do this without you!  Thank you warriors of Team William!  You have amazed me, lifted me up, and filled me with many tears of joy!

From Abigail & Audrey (but really from Abigail):

Thank you for all of my friends and new friends that came out to celebrate my daddy and came to love on my family.  Thank you for taking good care of my Daddy!

Pics From the Benefit

Our Man of Honor