Once your Glioblastoma Multiforme has progressed, I got to admit, is a real bummer. It’s not like, oh darn, this kind of sucks. I mean it really sucks. I do not know if there is a STOP sign for progression, but certainly this has passed it. It has blown right through it. A few tears every morning, but otherwise grateful for all the support that has been showered on me. I know there are a few of you who still have not been touched by my writing, but those are few and far in between. Mostly, I get very positive feedback. JK.
Figure 1: On the left, my initial MRI. Upper right, my second MRI with vast improvement. Bottom right, my newest MRI with growth.
Here is my very first MRI. Ugly. 30 or so MRIs later, the upper right demonstrates a significant improvement over my last MRI, but what wouldn’t? The initial MRI just looks like scrambled eggs. I had another follow-up MRI (this gets to be a pattern after 30 or so MRIs). This showed significant growth of my tumor. I do not think it could’ve been appreciated on the last one. Does that make sense? 1. Terrible 2. Dramatic improvement, but truly better? 3. New growth. I am not so sure the last couple of scans didn’t show it, I just could not appreciate it with all the other changes. Also, the avastin should make everything appear better. How can you compare something that looks so bad vs something that looks dramatically improved? You cannot.
I feel fine for now. Actually, I feel well. Thanks for asking.
But first, the Alguire house. Where did we leave off? Have I said that too many times? It looks like mid-November was my last entry. Thanksgiving was ‘good.’ Christmas was ‘good.’ I’m not really sure what happened. Looking back at photos, we gathered at my sister Katie’s house for Thanksgiving. We celebrated with the whole crew plus Uncle Jim and Brad’s parents (the whole crew = all the cousins and their parents). Maybe Aunt Joyce and Elaine were there, maybe my in-laws, but maybe not. We went to Amy’s for Christmas (whole crew). Add the Jonases and Constants (Christmas can be exhausting around here). We had our fill of Christmas. All the Dorothy and Walt Alguire’s kids and grandkids were captured in one photo — that’s impressive. I mean, that’s just amazing. We went to Mom and Dad’s for New Years and shirked our responsibility for hosting any of the holidays. Maybe we will host Valentine’s Day or something. Anyone is invited.
Besides swimming (is there anything besides swimming this time of year?) we had a fire. Not a big fire, but something that could’ve blown up the house. We had Consumer’s Energy over here about 3 weeks ago, but could not detect any gas (it smelled like gas). We had the plumber here to detect any sewage (self explanatory). Finally, the fire alarms went off on the morning of January 12 at 5 AM. You would think this would be the end of our adventure. However, they advised calling an electrician that day to fix a faulty light switch. Our electrician, thank goodness, figured it out without too long of a delay. He felt the differential of heat on the laundry shoot and sensed Ella’s closet was too hot. I told him I didn’t think it was too hot. That was normal. I doubted this was a fire all along. When we did spot the fire hidden up by the drywall, I guessed the problem. It was a fire. We called the fire department triumphantly back (okay, I wasn’t so triumphant) at 12PM to say you were wrong and come on back. We pointed out the active fire about to consume the house.
As if things could not get worse, Miley, our dog, died on the AM of January 30, 2019. I opened the door at 6:30 AM to let Miley wander out at her personal choice. She was often tired in the morning and slept in to about 7:30 AM. This was not unusual. Staci tried to wake up Miley at about 7:30 AM, and found her stiff. She was a great dog, especially when you consider she never woke us up. She is in multiple pictures because she was always with us. She will be greatly missed.
I am getting repeat radiation, avastin, pembrolizumab, and temodar. That should be enough. Everything is riskier the second time around. You may recognize pembro from the first time go round. That’s an old friend trying to rekindle its good standing in our hearts (or brains). I can get take it locally now as well as the other medications.
Otherwise, things are going well. Besides a fire, Miley dying, and GBM, things are going as well as could be expected. My people are still doing well.
Figure 2: Allison got her dog for the first time. The classic photo of her chewing on Connor’s foot on the right. Miley with her other parents, Deanne and Damian (Damian is only seen here). They loved her just as much as we did. Miley sort of gave up during our last race and hopped in the water.
Figure 3: My kids. Ella negative split her 500 freestyle. That is when you start out a little slower and build into it. That is so not Allison’s style of taking out the 500 free as fast as she can and then holding on for dear life. Upon completion of her 500 free, Ella seen looking back at the clock. Credit David Chandler for all these photos.
Figure 4: Dorothy and Walt and all the Alguires you can name.