October 22 was not just another birthday, it was a 3 year anniversary. I deserved it after 3 craniectomies, a lumbar drain followed by ventricular peritoneal shunt (VP shunt) and a blood patch. That was earned.
Just prior to my birthday, I tried to sell some of my bikes online. Then I realized that was just too depressing, and put my bike back on the trainer. I am still trying to sell my mountain bike for free (616-206-8835) and a road bike for a few hundred bucks. I assume people will inquire more about the free mountain bike, but I am just tossing it out there.
On my birthday, I got my favorite present ever: a Brighter Every Day book with pictures and notes from my family and many of my dear friends. That was delightful, and courtesy of Courtney (Stevens) Kerry. I cannot believe some of the scenes she captured, but I was impressed. I do not know how she tried to sneak into this blog, but she easily cleared the fences with that one.
What have we been up to you ask? Well, a few things. We went to an MSU football game with my parents, the Ackermans (except Kathryn but add on Chris) and my whole family. Staci got us all tickets for my birthday. This came in 2nd, not that I am ranking them (Michigan Swimming shirt came in 3rd from Amy, Katie’s fleece at number 4).
On a last minute suggestion (4 o’clock on game day), Connor and I were asked to go to an exhibition game against Northern Michigan. Connor is never happier than when he is at a sporting event. Specifically an MSU sporting event. It didn’t hurt that we had great seats courtesy of Roger Jansen: 3rd row in the middle of the parents’ section. That was awesome, but technically not a birthday gift. I won’t rank that, but it was a lot of fun.
Other than that, the kids are swimming, Connor is playing futsal, and lots of basketball. These activities keep us busy on week nights and weekends. During the week I have my normal routine. Mondays my sisters come to visit. We typically walk the lake and either grab some lunch or a coffee. Tuesdays are breakfast or lunch with Todd. We have checked out most of the breakfast places in Grand Rapids, including Denny’s last week. Every other Wednesday I get my Avastin infusion. Typically my parents take me as I have to be there before the kids are off to school and then I spend the morning with them. Thursdays Staci and I usually spend the day the together. Sometimes we go for lunch (The Flermoens are our favorite lunch buddies), out for coffee, or run some errands, but most recently we went to the movies. We saw A Star is Born, so now our afternoons are filled with the music from the soundtrack. We just can’t get enough of Bradley Cooper and Lady Gaga. Fridays are up for grabs and the weekends and nights are spent with Staci and the kids. Oh, and I attended two Masters swimming practices this week. I swam slowly. There should be a ‘but’ in there, but there is no ‘but.’ I was just slow.
Figure 1: Lower left, hanging out with Kenny Willekes, Chuck Willekes’s son. Otherwise, various combinations of Ackermans and Alguires at MSU v Purdue football game. There is image of some nice basketball seats as well.
Figure 2: Some highlights from the Brighter Everyday book: Far left, one of my all time favs with Connor and me. I can barely look at it without tearing up. Middle left, Allison and me. Middle right, Connor and me, showing him the ropes. Far right, Alli and me (sense a pattern?).
My right arm does not work that well, so bear with me. I guess you can read it at the same speed, so you will not be affected too much. Actually, not at all. I tell people my right arm is about at 80%, but my good 20% involves typing with minimal errors. I looked around for a dictation device, but then realized neither of my computers have microphones. I decided that Staci would be a good option, but that was a failure in mutual timing (3 AM is not her time to write). So I just started typing. With my left hand.
I think we left off sometime after surgeries, but before ‘treatment.’ I put treatment in quotes because I am in the Tocagen trial. If you remember, this is a randomized trial including 1 week of chemotherapy followed by 5 weeks off. Initially this was 30 pills a day for 7 days. That’s 30 pills each and every day for 7 days. If this were not enough, my levels were a little low, and I got fatter (it was the steroids, I swear) so they upped it to 32 pills per day (that’s 252 pills each week). Just let that sink in (or try to be absorbed). That’s a full meal and then some. I’m serious. And if you are curious to why I have a headaches and nausea. There’s your answer.
Since I was still a little confused, had some word finding difficulty, and a little confused (just kidding), I was started on Avastin after a consult with my neuro oncologist in Chicago. My primary oncologist and sister, Katie agreed and she had it ordered asap. In her words, “Why wait another day when we can start it tomorrow.” Good point. Avastin can decrease inflammation almost immediately. However, to need Avastin this early during the protocol is a bit worrisome, but I have had a lot of edema from my three resections so who knows. Yes, I am much improved. Yes, I am on the last line of defense against Gliobastoma Mutiforme.
I think I am dying. I mean, big surprise, right? Not really soon, but within the next year or so. Maybe much sooner, maybe later. I have too many neurological symptoms to deny that. My right arm and leg were drooping before I started Avastin. My right arm is much shakier. My legs tremble when I try to sit still. I called home to my PCP and primary oncologist Katie tearfully to clarify my symptoms, but we both agreed it was not recurrence. Katie told me I should have recurrence in the same area where it initially presented. Maybe, but I chose to believe her for now.
In less depressing news, I continue to love my people. I have multiple friends and family members. To make a list would be exhaustive and inevitably incomplete. So I won’t list them. If you think you should be on the list, great, you probably are. If you think maybe you are on the list, then probably not.
I do want to shout out to my kids and wife. Mia is coming into her own as a kindergartener. She loves to sing and draw and write her name over and over and over again. I think she is almost ready to read.
Queen Elizabeth loves to run. She loves to swim, but I doubt she will have anywhere near the swimmers build. But she also loves to read. If you want a book read (and a followup test taken), she is your girl.
Connor loves everything sports. He consumes so much of it, I am slightly concerned. I mean, if I tell him Florida Gulf Coast University was good a few years ago, he will list their starters. His mind is like a steel trap for (what I consider) useless trivia and obscure song lyrics.
Allison is a good kid. I mean that in a very positive way. She is just a good kid. Being funny is probably her strongest attribute. I always hear about how funny she is from everybody who drives her somewhere. I agree. She spends 4 nights and 1 morning a week at the pool. Some nights she is there until 9 pm and on Fridays she is up by 5 am and in the pool at 5:30 am. That is commitment for a 13 year old.
Finally, Staci. She is the apple of my something, the light of my other thing (she continues to make me have word finding difficulty). I think we are in a good spot. If she does not edit this out, I’ll know it’s true. I love you, enough said.
I feel like I am saying good bye. I am not. Just see y’all later!
Figure 3: Upper left, Ella and Mia help support blanket Cindy Heffernan brought over. Upper right my sisters, Staci and me after my birthday lunch at Roses. Lower left, Queen Elizabeth and her sister, Mia. Lower middle, the 23 vials of blood I had to give. Lower right, the Alguire kids on picture day.
Figure 4: Upper left, one of my favorite pictures with Anna Ackerman and Allison, held by Aunt Amy. Another favorite (okay, I’ll stop calling them favorites) of Connor and me at the soccer game (the joy on his face) and in the water in Florida (probably showing him a crab). Lower left, Allison with Mia and Ella. Queen Elizabeth shines as always in the lower right.
Two years ago on my 40th birthday!