September 2009

Posted by Casey on September 13th, 2009


I just returned from my 3-month visit to Houston. I was scheduled for the standard blood work, MRI and visits with my two main doctors (Wolff and Slopis), along with some additional meetings for Li Fraumeni syndrome. The tests were all scheduled for Thursday, so I flew down on Wednesday afternoon to a ridiculously humid Houston. Thursday was like clockwork. I started with blood work at 7:00am, followed by my MRI. I left the center by mid-afternoon. That night I got to meet up with Mark, another survivor who Jill and I met on the M.D. Anderson ski trips. As you can see, he shares my enjoyment of Amy’s Ice Cream.

Given the results of the last tests (MRI & PET CT in June) I wasn’t all that nervous about the results of this round. I went in Friday morning for my 9:30 appointment with Dr. Wolff and found myself waiting for an unusually long time. It felt a bit like the old days at Mayo Clinic waiting for hours and hours to see the team. When Dr. Wolff finally came in he went straight to business and I immediately had the feeling something wasn’t right.

He pulled up my MRI and before he said a word I noticed a very bright spot on one of the layers of the scan. He quickly looked through some of the different views (front to back, top to bottom) and each time he reached the area where I had radiation I would see a couple spots. He still hadn’t said anything.

He started pointing these spots out, and after looking through the scans he went to read the radiologist’s briefing. He read it out loud, translating some of the medical speak as he moved through it. The short of it was that there are two spots, very close to the removed tumor, and both in the area that was radiated. The radiologist had noted that these spots seem like they might be a reaction to the radiation, and not necessarily a tumor. Doctor Wolff felt, however, that these types of side effects happen within the first several months after completion of radiation, and I am now over 2 1/2 years out.

I listened as though it was someone else he was describing… not yet reacting to what was being shown.

We compared this MRI to the one taken in June. One of the spots had been marked by the radiologist at that time as something of no concern. You could barely see it. In the new scan it should up very vividly, was much larger, and accompanied by an entirely new spot.

We also discussed recent seizures I have been having. They’ve been much more intense in the last month or two, and he explained that this would also serve as a sign of growth in that specific area of my brian.

I suddenly started to react and felt my throat tightening as Dr. Wolff started explaining some of the treatment options. He was mentioning chemo drugs, and new studies that are only available at M.D. Anderson, and the possibility of a biopsy. It all went in one ear and out the other and I just focused on not crying. When he finally asked what I would like to do next, all I could do was grab the phone out of my pocket, show it to hime and say “I need a call”. I immediately started crying and went off to call Dad to explain the development. Mom arrived home shortly after and we were all in disbelief.

Before we could move any further we needed that confirmation, and the quickest way to get it was through additional tests. I went back to Dr. Wolff’s office to get an order for a PET CT, as he was hoping to get another type of view and an opportunity to confirm these spots as tumor. I immediately went over to another building and began the long wait for the PET CT. I literally had just eaten a bag of peanuts I had in my bag from my flight the other day (15 peanuts total, maybe?). Dr. Slopis had asked if I had lunch yet and threw some crackers my way. When I reached the PET CT center I found out that you can’t have ANYTHING for 6 hours before the test. So I waited, and waited, and waited until I finally was called for the scan… literally the last person in that area of the building by the time the scan was completed around 7:00pm.

Dr. Wolff’s nurse told me to meet up with Dr. Wolff in the hospital as soon as possible after the scan. He waited on a Friday night until 7:00 to give me his quick read on the PET CT. Wow!

The scan didn’t confirm anything. It was a bit of good news, but certainly no guarantee. It only told us that the PET didn’t read what the MRI was showing. Without the confirmation, it left us with only one other option… a biopsy.

When I finally left the hospital, I couldn’t do anything but go get Mission & Amy’s. As some of you know, it’s my top pick in Houston for stress reduction. And it seemed to work a bit.

So here’s where the visit left me:  still unsure of whether these are tumors or just a side effect of radiation, and because of that, unsure of next steps in treatment. Whether its a tumor or not, I will be going through some level of treatment since it seems to be increasing my seizure levels and is growing in an area of my brain where we certainly don’t want it.

I’ll be working on Monday to figure out timing with Dr. Wolff and Dr. Weinberg (my brain surgeon) on when we can do a biopsy. I’ll be setting up flights accordingly and will be sure to keep you up to speed on when that happens.

In the meantime, think good thoughts. I hope you’re all doing well.


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53 Responses to “September 2009”

  1. Love you!

  2. Dear Casey –

    All our love and good thoughts coming your way!

    Aunt Lucy and family

  3. Julia Stephenson

    Casey – ok, this is news in the middleground. ed had me in a panic but now i will look to the positive side and send every ooey, gooey thought i have.

    love you, julia

  4. Casey – Love you and praying for you….. :)

  5. Miranda (Bitz) Dietrich

    Casey, I wish this was all just a bad dream for you and that you could have your life back. I am sending positive thoughts and sunshine your way.

  6. Uncle Chuck & Aunt Debb

    Casey, hang in there. Our thoughts and prayers are with you. Love you

  7. Steven Warren

    Dear Casey ~~
    I’ll continue to think postive thoughts, wishing you strength during this new development. Please let me know if I can do anything for you here around the condo while you’re back & forth to Houston. Pick up mail? Water plants? Vacuum your concrete?!? :-)

  8. Casey,
    I’ll be thinking of you and praying that the Doctors can help to come up with answers. I wish this would all just be over for you.

  9. I love you honey and am thinking of you.

  10. Karen & Todd Andrews

    Ugh, Casey, I’m sorry. Were you down there alone? I wish we could have been there to join you for Mission or Amy’s and some much needed moral support.

    Even though things look bad, I’m going to pray like crazy that this ends up being radiation side effects. Are you doing your biopsy in MN or TX? Please let us know if we can do ANYTHING to help — I mean it.

    No matter what happens, we know you’re a fighter and you’ll overcome this just like everything else that’s been thrown your way. You are incredible!!

    Karen & Todd

  11. Michelle Novakoske Pucci

    Hey Casey. I’m thinking positive thoughts for you. Keep on being an inspiration to so many people.


  12. Erik and Jen

    Jen and I are sending all our good thoughts your way.

  13. Lisa & Bernie & family

    Casey, Hang in there & only good thoughts are going your way. WE will pray for you!!!
    Love Bernie, Lisa, Dani, Kenz, Roo & Cam!!

  14. Janna Sperry Sundby

    Hey guy, this news is ugly and scary. It is what it is and you’ll deal. Know that lots of people care deeply and will be sending positive energy and thoughts (me included). Be in the moment. Love, Janna

  15. Hi Casey. Hope all goes well with additional tests. Glad to head it sounds like you’ve got a great medical team working for you.

  16. Sending lots of love your way and praying for you Casey. Given the tremendous outpouring of love and concern of all your family & friends, God just has to listen!! Love, Daire

  17. Love U!
    A billion positive thoughts being sent your way………..!!

  18. We’re keeping our fingers and toes crossed that the biopsy brings back good news. We’re keeping you in our thoughts every day. Love, Dave+Katie

  19. Hi Casey, Sorry to hear about the unidentified spot. Keep your spirits up and let me know if I can do anything to help-like bring ice cream to the hospital.

  20. Mary Vanorny

    I am thinking of you and sending good thoughts and prayers your way. Miss you, Mary

  21. You are such a strong person — stay optimistic. I’m in disbelief and hope that the tests have a positive outcome. Toby, myself and the boys are all thinking of you.

  22. You are an amazing man, Casey. All my thoughts are with you and feel so absolutely fortunate to have you in my life. Stay strong. Love you to pieces, Angela

  23. Positive thoughts, good energy and lots of love from me to you!

  24. Lisa and Mark

    Only sending positive, happy, and loving thoughts your way!!! Wishing, hoping, and praying for a good biopsy. Love, Lisa & Mark

  25. My dear brave friend ~ I am sending positive healing thoughts your way & am praying that whatever occurs, good health & happiness will be yours. Let me know if you’re up for lunch again ~ I’m close by & always enjoy seeing you ;-) Love, Tricia

  26. Lots and lots of good thoughts coming your way from the west coast! Love you.

  27. Oh, Casey, you are in our thoughts so much. We certainly send our most positive thoughts your way. Hang in there. Love ya, Rose & Mike

  28. Hey Casey,

    Long time no see. I’ve been reading what you write. I miss you, you’re in my thoughts and prayers. -Mandy

  29. Jen Fightlin

    I am so pissed. You so do not need all this sh&%$#@*iT!!!! I love you and think of you often. You are my hero. Jen F

  30. Casey–Sending only good thoughts and positive energy you and your family’s way : ) Thank you for all the updates

  31. Katherina Manoharan

    Dear Casey,
    Please know that you are in my thoughts. I really hope the biopsy brings better news. I’m sending hugs and positive thoughts your way. –Kath

  32. Casey, You are a fighter. I am praying for you and thinking positive thoughts. Hugs to you.

  33. Casey — all my love, prayers and positive thoughts are with you. Hang in there!

  34. My heart is with you, Casey, keep up the fight. Keep me posted and let me know what you need me to do to help/

    Much love,

  35. My thoughts and prayers are with you always. Don’t ever give up. We love ya.

  36. Casey – over & over as I read the comments, I kept thinking, yes, he IS a fighter & with all the prayers coming your way, you will fight & win this round too. Keep strong. Love to you & your family!

  37. Casey, you are loved by so so many people. Ed let me know you’d been in Houston and I just got your email. I will be sending all possible positivity your way! Love you much.

  38. Niki, Sam, and Smiley

    Sending you all our love and prayers!!!!

  39. Christopher Harnack

    Casey, although it has been some time since I last saw you in Chicago, you’ve been in my thoughts. I know you have the strength, love and support of so many to help you get through this. Keep positive and never give up! Love and Hugs, Chris.

  40. Dude, if i could hurl my heart at you from Boston, I would.

    Love ya so much!

  41. just read your site – am deeply shocked but know that if anyone can win this new battle its you, Casey. Remember we’ll be just down the road if you need anything. love you much!

  42. I’m thinking of you and praying for you Casey, love you so much.

  43. Turbo-charged and supersonic positive thoughts to you from London.

    Love and miss you!
    Timmy x

  44. Uncle Steve & Aunt Trina

    Casey….I just now got to read your e-mail. Believe me only good thoughts are coming your way! We’re praying for you baby! Love you!

  45. Uncle Steve & Aunt Trina

    Casey…Only positive thoughts are coming your way. We’re hanging in there. Love you!

  46. Sarah Z to the P

    Casey, my sweet Casey, thinking about you right now and sending peace, love and understanding.

    Always here for you. Sending positive energy down to Houston.

  47. Casey – my dear friend…you are in my thoughts and prayers. Let me know if you need anything and I will be sending you much love!!!

  48. Casey-Our love and prayers to you-Larry and Lana

  49. Casey,
    You have dealt with this stress so many times that it’s amazing you don’t have ulcers and heart attacks on a regular basis. I know the big Man Upstairs is watching out for you and wants you to stick around for years to come so you can write that book of yours and go on tour. Can I be your booking agent?

  50. Melissa (Fallenstein) Gengler


    I am thinking of you

  51. Cara Mills Bennett

    Casey, I’ll be thinking about you and praying for you. I’ll get everyone I know to pray for you! God bless you and your incredible strength.

  52. Mark & Peggy Fallenstein

    We want you to know we are thinking of you.

  53. Casey, you’re an inspiration to all! You’re in our prayers daily. You will beat this just like you always do. Stay postive, we all love you!

    Brook,Amy Bode & Bria