I rode to Chicago on January 10th with just my parents for the first pembro infusion of 2017. They are always invited to the less exciting trips. Translation: no MRI and nobody else offered to drive. Despite riding in my GMC Acadia for 3 hours with them, everything was cool. I had no symptoms, and knew my labs were going to be fine. I was just rolling into Chicago to get my infusion. My mom checked the clock nervously. She needed to get back to Grand Haven to pick up Genevieve at Mary A. White elementary school. I am no longer the focus even on these trips. That’s fine.
My pulse at this appointment was 47 bpm. My medical assistant raised her eyebrows at that number.
“Do you exercise?”
“Yes.”
“He could’ve been in the Olympics,” my mom told her. That is one possible explanation for a low pulse in this 5’9, 150 lb man. I just needed to find the right sport.
“He had to study too much,” she continued.
If only that were true. Do you think I would sit in the library at MSU studying for the MCAT on Friday nights if the alternative was preparation for the Olympics? I knew my limitations, but apparently my mom did not. I think that is why they seem so confident I am going to ‘beat’ GBM. We all have alternative facts about our kids. There is just a biological blindspot. I prefer denial. Beat what? I’m just here for my performance enhancing pembro.
The following day, Allison called me at 3:00 PM while I was in clinic with a patient. This is unusual, since I have only seen her use her ‘phone’ for Instagram, Snapchat, and texting. I was with an elderly African American woman and her daughter with difficult to control hypertension. She took her meds as prescribed when her blood pressure was high, titrating salt intake and meds to her blood pressure (not the ideal regimen). While I was trying to figure out what to say, my Garmin watch started buzzing. I was getting a call from Allison.
“Excuse me, got to take this. It’s my daughter.”
She smiled. Actually, see seemed to get a kick out of it. “Got to take care of family,” she said with a smile. Her daughter was with her at her appointment.
“Where are you, Dad?”
“Clinic. Everything okay?”
“Yes.”
“Call Mom, she is picking you up. I am in a patient room right now.”
It reminded me that I never answer my phone in clinic except apparently for Allison. It also reminded me that I can call my PCP any time, and he almost always picks up. Even if in clinic. Or out to dinner. Probably even at a movie. I can’t say the reverse is true. As we children ignore calls from our parents, our kids get revenge by ignoring us. We always answer the younger generation calls. I even answered a FaceTime from Connor during clinic. You are just happy they are interested. And you drive them to Chicago if nobody else will.
The pembro trial is designed for 2 years, and then it just ends. I am removed from the trial if I have recurrence / progression. That would either lead to repeat surgery (if still resectable) and a different therapy. With 5 MRI scans planned (every 9 weeks) prior to the conclusion of the trial in December, that still seems like a long time. I have been asked multiple times what happens after the two year trial. Ahh, this is what happens: I celebrate. Only a small minority of GBM patients make it 2 years without recurrence. We could either continue pembrolizumab off label, take something else, or nothing (watchful waiting). I hope we will need to make that decision.
We were recently at the Spectrum Cardiology holiday party. A Physicians’ Assistant told me “I don’t really read your blog, anymore.” That’s fine, Matt Brower. I guess this is a safe place to call you out ;). Being boring and obscure is all part of my 10 year goal. I’ve been back to work for over a year at this point, not missing a day since I’ve returned. I keep thinking I am going to work a little bit more, and then I think a little bit more. Why change what works? I have been back so long, the office is starting to take down the Team Craig signs and bulletin boards. I also had a Team Craig t-shirt that was hung up for people to sign. Those are now in my basement, and those bulletin boards are celebrating Heart Month.
Figure: Left, my signed T shirt from work, and a sign that was pulled down to make room for other announcements. I think I surprised Pod C doing this well into 2017. Middle right, putting the New England Journal of Medicine aside for Curious George. Right, the only January birthday around here, Mary Violet turned 14.
I just asked Queen Elizabeth if she would go to the Sweet Heart Dance with me on February 11, and she said YES! So excited. My plan is to take my girl to Russ’ again, show her how to spoil herself with a perch dinner, two salads, and a chocolate shake. Dreams do come true, Ella.
The closest I came to crying (read, I was crying) recently was reviewing pictures from the 2016 Daddy Daughter Dance, specifically the selfie I took with Ella and me as we were drinking a milkshake. I was still bald, and she was just a little smaller. My Olympic Gold Medal is to make the age of 50. That would get Ella to 17, with even Connor and Allison already in college. I just mourn for the missed opportunity to answer the phone when she calls (when she needs something), or just inadvertently dials my number. “Giving” a daughter away at a wedding is a little old fashioned of a goal for me. I want to see them step out a little bit into the world, but have a big safety net for them at home.

Daddy Daughter Dance 2016
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Staci told me she thinks I am pretty normal, just more defensive than I was before this whole mess. She says I just don’t take criticism as well. Well, that’s bullshit, and she knows it! And here I thought we had something. For example, we used to give each other the best Christmas gifts: we did not exchange gifts. She broke that promise, and I felt betrayed as I accepted her gift. She said it was fine I did not get her anything. However, a few days later, I got an email from her with gift ideas for her for next time. The Nerve!
Segue to a more serious ending, I have seen people do very well with GBM and some not as well. A couple were diagnosed after me, and already have died or are in hospice care. Others were diagnosed before me, and are still doing okay. Still, the most difficult part is considering leaving a life unfinished. I have always been pretty lucky, and even with this, and I couldn’t have asked for a better 15 months. But the pain of my inevitable early absence in my home is real. One of my best friends told me while running around the lake that there is pain because I have been so fortunate. Probably true and still bittersweet. No matter what happens, I got the best half of Staci. We had our first date, dance and kiss in high school. We went to college together, although not intentionally. She followed me to Ann Arbor, started a career, and we got married. We bought a condo, and then bought our first (and current) house with 3 kids in Ann Arbor and 1 extra in Grand Rapids. We have 30 years of accumulated parent-years (all of our kids ages added up). You can only have one love of your life. She may find love again, but I own the best real estate in her heart. And I do not plan on moving out anytime soon.
Figure: Upper left, New Year’s Eve selfie. Middle left, Allison must have seen the New Year’s kiss through the phone. Lower left, princess Anna and an unnamed snow princess. Upper right, Connor in January in Michigan. Lower right, trying to teach Allison the backstroke about 11 years ago. I was looking for older pictures of Staci and me, but apparently our digital photos only go back to Allison.
Craig, just a short note to let you know that unlike your “so-called” friend Matt Bower, I still read your blog and I’ve never even met you 😁! Even more, I send up a prayer for you every day. Now, my daughter, Anne Petruzzi, isn’t too impressed when I tell her I pray for her every day too, and I have no reason to believe from your posts that that’s anything you might set much stock in, but just thought I’d let you know. Not that I have any inside line that will assure us my prayers are answered the way we want them to be, but wanted you to know I’ve got your back on this.
Since I am probably about the same age as your parents, I enjoy hearing about them. I forward your blog to my husband, who at the age of 71 is still an active runner (but no more marathons) and also boasts of a very low pulse rate. Smug.
Stay well, keep posting, and not to get ahead of ourselves, but it would be fun to start planning a grand two-year mark!
Leslie Helwig
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:). On the contrary, I always appreciate a thoughtful prayer. I remain very open minded to things I cannot understand.
And my pulse is usually higher, so that was a pleasant surprise!
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I still read all your blogs!
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Ha.
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Just caught up with my GBM patient – 8 years and counting!!!! 😊 Love the blog. Debbie
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That’s awesome. Love to have a nice list of long term survivors.
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😊. If I could survive longer with organization, determination, and hard work, I would ask you for some guidance, Deb!
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YOU will see the grandchildren!
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Hopefully that is in greater than 10 years!
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I may have just come close to crying…
Beautiful words, Craig. Your honesty is admirable, as are you and the whole family.
I read every blog-Matt doesn’t know what he is missing.
I miss seeing your face at work, and laughing at your quick witted humor.
Thanks for keeping it real and keeping us informed!
Jodi
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Ha. I need to go up to the 8th floor more since I’m not rounding.
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Dr Alguire,
I think one of your best things is this blog-I enjoy reading it-makes me LOL (like the Matt comment) and tears me up at others. I am a nurse in the prep/recovery cath lab (one of the older ones) and I also pray for you-not necessarily every day but as I think of you which is often. If you really are open to finding out about things outside your understanding, just ask God if He really is real…He’ll show you first hand. 🙂
Praying for permanent healing.
Kiya
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Thanks. I’ll see what she says 😉
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I also read your blog every time. I continue to include you in my prayers. That 16 year old boy I worked with has turned into a remarkable man. You are an example to all of us. Nancy Hanenburg
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Another terrific blog Craig! See you at swimming.
kyle
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EGRHS 6AM
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Choked back the tears. Lots to celebrate here. Life is a gift. You are living it well. God’s Got This!!
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That was after several revisions to make it less depressing!
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always speak the truth. I love your real life play by play. The struggle is real, warrior on! Thank you for your chats and friendship throughout this journey…keep on inspiring
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Craig…I love your blogs, read them, laugh at them and cry too. You are in my prayers each and everyday. Your parents are wonderful people and they raised amazing children! God’s blessing to you and your family!
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My parents said you were looking for the next blog, so I got motivated over the last few days!
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Love your writing; hate your disease!
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I am always glad when the latest blog is posted Craig. So happy for your good reports!
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I still like reading your blog and look forward to them! Most of all I’m so happy you are doing so well and continue to pray things stay this way.
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We still read your posts! Sometimes we laugh at your sense of humor, most times we cry, though. It is raw and real! Looking forward to reading your next posts! See you guys at swimming!
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I so look forward to your blogs. You never cease to amaze and inspire me with your real ness, humor and complete and raw honesty. Love you, Craig…keeping the prayers flowing. Mimi
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Hi Craig, Although you may not remember me I do remember you as a young child. I met your mom at the Y when I brought my children there for her wonderful classes. That is where I first met you and your sister Katie. I heard that you were going through this journey but did not know you had a blog. I find it inspirational and love reading what you have to say. I am certain that the universe has your back and everything will be as it is suppose to be. You have a wonderful family who loves you dearly. There are actually people in our world who do not have that nor do they have anyone that cares. I try hard to reach out to those who are lonely, broken, hurting. And I love hearing from people who have a strong spirit and great faith in the human spirit. I feel you have that. The great thing is we never have to do it alone. I want to join your team and read more about your journey.
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Hi Craig
I follow your blog too. I have worked over the years with your dad at NOCH. I know your mom a liitle as I see her occasionally in the cafeteria with the grandkids. My husband and I pray for you and your family. I don’t know if you believe in God but I would like to give you a biblical blessing to you- May the Lord Bless You and Keep You, May the Lord cause his Face to shine on you and may you be given His Peace. This is from the Book of Numbers. I have always admired your whole family and their hard work and success. Deb Feyen
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I peek at your page every few months. We found you when doing research on GBMs. My husband had a seizure in April that turned out to be an egg sized brain tumor in his left frontal lobe. MRI showed it, there was a lot of swelling and bleeding. They did emergency surgery 24 hours later. Referred to Oncologist from hospital. Path report came back GBM tumor grade 3/4. Oncologist requested molecular testing. Started 6 weeks of 5 day a week radiation along with daily Temodar. Finished that up July 7. Meanwhile, Oncologist looked for clinical trials. University of California at San Francisco was his choice. He sent them info. They called, we released slides and MRI info all to them. The shock came in first week of August. UCSF Path found it to be a Oligodendro Glioma, stage 2. They still invited us to have a consult so we did, even though they don’t do clinical trials on Oligodendros. Dr Clark there was so excited for us. She assured us that the treatment Dave had already had was exactly the treatment she would have recommended for the Oligodendro. Went back to Oncologist here, and Radiation Oncologist. They were overjoyed for Dave. They had never had a mistake in pathology like this in all there years of practice. The original laboratory, when faced with a new diagnosis sent the slides to Mayo Clinic for third opinion. (with some prodding from me and the Radiation Oncologist. Mayo concurred. Oligodendro. So here we are….Dave is having his Temodar pulses, he is in the middle of his 6th month of them. With MRI’s every 2. How did this happen. How do the doctors know this has never happened before? Here we sit, so thankful for this miracle. But so many questions. I had followed you at the beginning…snuck in and read your posts. Now I feel guilty because we had a miracle. We made life changing decisions based on a wrong diagnosis, but we have to be happy that Dave is alive. After the surgery, the surgeon had given him about seven months. Sorry, this is so unfair but I can’t hold it in any longer. We are from Grand Rapids but live now in Las Vegas. We are both 67. My husband works at Nellis Air Force Base as an Environmental Scientist.
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Life is unpredictable. I’m happy for your good news👍.
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You’ll be happy to know that (unlike my slacker husband) I still read your blogs 😜.
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Ha. I like that people are losing interest — It means I’m doing fine. It was just funny to hear it!
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Still a grey matter fan!!
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I always enjoy your real life play by play. Thank you for always speaking truth and inspiring others. Thank you for the friendship and chats through this journey….fight on warrior!
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I am a Clinical Research Coordinator, going to school for my NP. While searching for articles on essential tremors, I stumbled upon your blog. I actually am a dedicated Neuro Oncology nurse, all of my trials are for GBM. I wish you the best of luck!
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That’s a roundabout way to get to my blog. If (when?) I have progression, I’ll be looking around for another trial. Who knows, we may cross paths at some point again.
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Craig- I read your blog and pray for you and your family. I know you probably don’t remember swimming with me at Masters since I left at 6 months pregnant, but I plan to make it back this summer and see you at the pool! I loved meeting you both May of 2015 before we had our 4th child. You and Staci are a great team. Hopefully you will be around for many, many years to come. You are the only father your kids will have and every day with you is a gift and they will treasure that. I lost my father at 12 and I would not say you ever “get over” the loss, but you do learn to live without the dad you thought could hang the moon. I pray your children will not have to know that feeling for a VERY, VERY long time. You are doing a great job at living each day and I love the humor in your blog. Keep that going, we all need to laugh more and worry less. All the best….
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I’m holding you to it…see you this summer!
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Hi I came across your blog while searching brain tumor Grand Rapids, my mom has primary cns lymphoma, not sure if you are open to connecting further, as it is a strange new world you enter when you hear that news in the ER that your mom has a tumor in her head. From a brief read of your blog maybe you would have advice on doctors you would recommend for Primary CNS lymphoma in GR. Thank you. God bless. Keep fighting and speaking the good and also venting out the bad because it needs a space too.
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I’m sorry to hear about your mom. There are a few oncology groups in town, but the biggest is Cancer Centers of West Michigan. Brett Brinker sees their lymphomas. Full disclosure, my sister works for that group. I know Brett personally since our sons play on same soccer team. Would you believe me if I said he was great😉? I’ve heard the St. Mary’s group has a good oncology group, but I do not know any of them personally. Spectrum has a neurooncologist that I’ve heard great things about from patients, but I honestly do not know if neurooncologists see CNS lymphoma. Her name is Wendy Sherman.
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Thank you kindly, God bless!
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