I am losing my hair. I am spilling a small amount of hair onto this keyboard as I type. I hope it will remain comboverable (is that a word?). If you remember back to 2015-16, I was also irradiated. Back then, I had a bald spot that grew, but then shrank enough so I could do a combover. I am trying that now. It basically kills quickly reproducing cells. I was on a shortened course of irradiation for 10 days until 2/20/19. That is because my brain can only take so much radiation and still have any Craig cells left.
I received a “Certificate of Radiation” on my first irradiation. I enjoyed it so much, I left it on my bed stand. This time I received a “Congratulations.” The first quote was kind of creepy for a note about cancer: “Out of every beginning comes a new ending, and out of every end springs a new beginning.” On my “Congratulations,” I received some wacko “If you can dream it, you can do it.” I do not know what to say. Thank you?
Figure: On the left two, my somewhat creepy congratulations. Middle right, getting my mask fitted. On the far right, my traditional photo with my parents.
I am also taking Temodar (again). This is chemotherapy light since it probably does not work with me, but I technically did not ‘fail’ it. That’s a tough drug not to ‘fail.’ I was barfing from 2AM to 5AM the first night I took it. That’ll get your attention. Otherwise, my primary oncologist gave some tips on how to take it (Ativan, Prochlopazime, and Zofran) with a Temodar chaser. So delicious.
I am also taking Pembro (again). This is an interesting chemotherapy since it is not really chemotherapy, it is immunotherapy. Basically, it revs up the immune system (I hope) and puts cancer in a bad defensive position. It works very well in melanoma, small cell lung cancer and something else that I’m forgetting. I do a lot of this these days. What were we talking about?
New to the regimen is Avastin. I know this works because my brain was scrambled before I took it, and this cleared it up afterward. This showed immediate results; This was a definite winner.
Enough about side effects of my new treatment. Here are some pictures of my kids.
Figure: Staci said I did not take enough pictures of her. Case closed.
Figure: You can figure it out. Actually, All Ella All the Time. Ella trying on her tech suit. Ella driving to districts. Ella swimming a beautiful freestyle.
Figure: Left side, Connor playing futsal. We like to say Connor plays the game, and Mia plays parallel to a game. She just runs up and down the court without touching the ball more than necessary. Lower left, Connor with his two grandfathers. Middle right, Allison with her two closest in age cousins. Lower right, our kids and their grandmother GG.
Hoping for the best. I’m watching you live every moment with awe and respect. And you would probably wisely say, “what else is there to do?” Beautiful kids, wife and family!!! ❤️
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So sorry to hear this Craig, can’t belive how things keep getting worse… beautiful pictures of the kids and Staci. Blessed nfs to you and your family, Craig.
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As usual so good to get updated with your post! Sorry about the side effects. Love the pictures! You and your family are in our thoughts and prayers!
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Prayers continue for you and all of your family, Craig. Beautiful pictures of Staci and the kids. Thank you for sharing the pictures.
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Active family! You’ve done a great parenting job!!
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Glad you have some Craig cells left. Glad you have Avastin to unscramble your brain. Beautiful family. I am relieved and amazed every time you post.
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You amaze me and inspire me! To think of how strong you are and of course I know you don’t have a choice it brightens my day! Your family is blessed to have you and enjoy every day that they do. Please, keep up the writing because you matter to so many and bring laughter and tears to us.
Bev
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Craig, thanks for keeping the many of us who think of you and your family often up-to-date. Sorry one of my favorite athletes is feeling so lousy. Your attitude and humor is inspiring, my friend.
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I’ve been tuning in periodically since October 2016. It was then my husband, John, was diagnosed with glioblastoma after a stroke caught us completely off guard. The stroke was caused by the bleeding of a brain tumor we were to later discover.
Apparently, our parents attend the same church in Grand Haven, Mi. My mom shared your amazing success in addition to the link to this blog. Your experience provided so much hope and inspiration! Aside from brain cancer, we share some parallel paths. We too have small children, are tied to Michigan (it is where I grew up and my family resides), and received care from some of the same doctors at Northwestern. However, the commonalities end there.
John’s fight was a brief one as he passed away January 17, 2017. I was told average life expectancy for a glioblastoma patient is 17 months–obviously, some would get the short end and some the long. You have provided this window–this voyeuristic opportunity to view life with glioblastoma from the long stick perspective.
After John’s death, your posts angered me. I was pissed that you had all of this luxurious time–time to reconcile your illness, watch your kids grow, share this experience with your wife, feel the love of family support, plan for your family’s future, and say all of the words you always wanted to say. All the while, John lasted just a few short months and even less time with ample cognition as a brain bleed post shunt insertion left him unable to communicate and unable to see. I felt robbed of all of the experiences you described in your posts.
Fast forward two and a half years… I don’t feel angered by your posts any longer–only admiration for your strength, tenacity, and candor. I’m so grateful to you for sharing your story–your journey in this crazy human experience. I hope this note finds you well. Thank you.
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Jacqui,
I’m sorry about your loss. That must’ve been a rough. I hope you can continue to find positive memories.
I have right arm and leg weakness, although mild. Most days I feel pretty good with a few headaches. If you compared me to last year, physically I could hardly tell anything has changed, but I know things are more scrambled in my brain with much worse hair. From that standpoint, much has changed.
Anyway, thanks for the positive thoughts and prayers. It does mean a lot.
Craig
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