The Hard Road Ahead

It’s been a while since my last update or blog post.

This is mostly an update. Sorry no picture for this post.

While Christmas approaches we have been through a lot and are about to go through a lot more.

I was in the hospital last week for brain swelling. It’s the worst I’ve looked and felt through this entire experience. I lost feeling on most of the left side of my body. I couldn’t use my left hand (I’m left handed). Hand-writing and daily tasks became extremely difficult. I needed a STAT MRI which showed radiation necrosis swelling in my brain. It was significant enough that it was pushing on the other side of my brain and creating another mass-shift– disrupting the center line of the two brain sides of the brain. The results were the same “whooshing migrate” headaches I felt in April 2019 but also the loss of strength on the left side of my body. This included my face. Paige said it looked like I had been to the dentist. I had slowly noticed this happening but I had conflated it with another issue (taper off of another drug). After my MRI result discussion I was directed to increase my steroid intake, which should also help with the control of the left side of my body. Unfortunately, by this time the swelling was so bad it was causing serve nausea and I couldn’t even hold down water. So every time I took medicine I threw it up. At an appointment at the cancer center they took a look at me and sent me to the hospital for IV fluids and IV steroids. In the meantime they made me an appointment at Wake Forest Hospital for a surgical consult about a less invasive procedure to remove the dead brain tissue from the necrosis, which would stop the swelling. The appointment was set for Monday 12/14/20. I would have to improve by then.

To review, in June 2019 I received stereotatic radiation treatment to my brain to kill any remaining cancer cells possibly left there after my tumor removal surgery. One possible side effect is necrosis, or dead brain tissue. We’ve since learned it appears 15-18 months after treatment which falls in this window. My radiation oncologist said I appeared to be a “text-book” case of necrosis.
It’s not cancer but it does have its own serious issues that need to be handled. We known that I would probably need to have a procedure to remove this tissue but previous appointments were optimistic that this procedure could wait until a various time in 2021, possibly after COVID numbers went down. At the same time they also proposed a less invasive procedure called Auto-LITT that showed a potentially incredible recovery time. Two of my doctors recommended Wake Forrest for the procedure. A consult was set up for next Monday 12/14/20.
My hospital admission was set up with the express goal of getting me healthy enough in time to a surgical consult at Wake Forrest to evaluate me for this procedure.


I was deemed healthy enough to leave the hospital Friday afternoon.
A hospital visit with limited mobility and no extending visiting is very difficult. Since I could hardly use my left hand, eating and movement was very difficult. I had an IV so I couldn’t move freely. It seemed like I was always getting food I couldn’t eat, in a space where I couldn’t arrange my stuff. Luckily the visit was short. Some communication problems about follow-ups made it difficult to understand some of the timing. But I showed improvement, was holding down food, and medicine so deemed well enough to leave to make the consult.

I had a night at home that was good and bad. Good to be home and clean up, bad because of my left-side limitations, especially with the kids (and it’s getting close to Christmas!). The kids didn’t understand when I told them I couldn’t help them with video games or put them up on my shoulders like I used to.

Paige had a college grad-school friend come in to watch the kids for a night and we left for Winston-Salem the next day for the consult.

The consult was a bit of a let down. We arrived and found out they had none of my imaging records. Even though it’s all electronic something slipped up and they didn’t have anything. When we got home there was a letter in the mail requesting us to bring physical copies of the imaging. Too late.

The doctor was able to talk with us at length about the procedure and answer our concerns about anything. But within five minutes he was able to determine I was not a candidate for the procedure because in my case the tumor had been removed so the lasers would not be able to access and heat up the circumference of the dead brain tissue. It would have to be a new tumor or new area in order for that procedure to work. The only alternative is a full craniotomy and then to go in there and get out the dead tissue by hand. Like the one I went through in April 2019. Except this time during COVID with limited visitors and no overnight visitors.
We weren’t expecting this.

Wake Forrest said they could do it– they had open availability even before Christmas (we’d like to get through Christmas first. We went home bummed. But he recommended staying close to home if possible, our preference too.

News has trickled out slowly. It’s still difficult for me to text on my phone. This is the most typing I’ve done in two weeks. And it’s still coming back, which is good. I’m getting emails and Merry Christmas stuff while we’re trying to figure out how a Winter craniotomy during COVID will work. I’d rather be out looking at Christmas lights with my kids.

The biggest piece of the puzzle left is an meeting with my neurosurgeon in Greeenville to discuss how the rest of this could go and possibly schedule the surgery. We tried to push up that appointment but it’s set for Monday PM and it is required to be face-to-face. We’re hoping we walk out of there with a scheduled surgery. Else I guess we go to Wake Forrest. In the meantime, we just wait. It’s only Friday. Not knowing when is hard. It’s difficult to prepare. At the same time I have to take it easy and not screw up my body. It’s coming at the same time of regaining use of a limb so I want to take advantage and do activities, but it’s the worst timing.
At this point we just want it done so I can start the recovery, which will be like last time. I’m already remembering the two weeks with no shaving and wetting of hair. (I will be getting a haircut before the procedure). I remember the trouble sleeping and lifting restrictions (nothing over 5lbs, a gallon of milk is 8 lbs). The wound cleaning, the various follow-ups to check in on the wound. No using stairs for a week. The screen time limitations.
So now we sit and wait until Monday when we hopefully know more. If we could pick (which we probably can’t now) we’d choose the week between Christmas and New Year’s Day. It probably wont work out that cleanly but we’ll see, hopefully Monday.
Thanks for all for thoughts and prayers and reaching out. Please know I’d love to talk but just don’t have the physical ability or time at the moment. If you’re wondering what you can do just wait until I’m in recovery– there will be plenty and I won’t be afraid to ask.

[I do have an update I’d been working up before all this happened. And I revised my My Journey to a longer piece of My Survivial Story. I’ve been working on it for quite a while. It’s surreal now going through this that I’d already went through and added a ton of content to that first recovery, diagnosis, and treatment. I’ll release those soon, the timing might be strange but I want to get it out before I have to go back to the hospital again.]

4 thoughts on “The Hard Road Ahead”

  1. John, I am so sorry to hear about the downward spin on your long hard journey. I can really understand since I’ve been through a similar experience. Five years ago I was getting ready for my brain tumor removal. It was done on 12/23/15. I was in the hospital on Christmas. Like you I was unable to eat and felt isolated. Dave was able to visit but it was a frightening time for me. I was only in the hospital for 6 days but when I went home I started having excruciating headaches and constant vomiting. It took quite a while for improvement but I surely wasn’t expecting the discomfort and discouragement. I know misery loves company but no one should have to endure this kind of feeling. Please know that things will improve and you will come out stronger in the long run.

    Anne

  2. WOW! I don’t even know what to say for this situation. If I was of my mom’s generation I would send you a get well card, tell you we’re all praying for you and hope you’re better soon but that all seems so on the surface to me and just doesn’t fit.

    I love you buddy! You are a fantastic father and an even better friend. Your good humor and general awesomeness inspire me more then you know.

    I won’t pretend to know what your going through physically or emotionally but I do know THIS… You are strong. You have an amazing wife and you WILL get past this.

    I’m here of course for whatever you might need just have your people let me know what that is and when.

    Stay strong!

    1. You’re the best brother! You always manage to build me up and not burden me with tons of questions. You have a spiritual gift when it comes to understanding people and what they need. Can’t wait to hang out again and celebrate.

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