A year ago today, I had my nut cracked open in a vain attempt to remove a tumor from my head. As I write this, 365 days ago I was in the ICU asking my wife if I could have something to drink, how my children were, and if we could go dancing.
The operation failed and I still have the tumor. The good news is that it is not growing, and the operation did have the positive result of stabilizing, if not clearing, my hearing.
I have learned a lot in the last year about life and what’s important. It was not a sudden epiphany that came to me after the operation, but long and some times hard learned wisdom.
But I am thankful for where my journey has brought me and where I hope I am heading.
Immediately, I am heading to San Francisco for a few days for work, but with Tara with me. We plan to spend the nights taking in the sights, and all day Saturday exploring Alcatraz.
This summer, we will be heading with Jocelyn and Dashiel to Barcelona! One of our favorite cities!
I am excited about our future and I thank all of my wonderful friends and family for their support and love this past year.
The one thing I’m really missing is taste. Between the anesthesia and pain killers I’m on, plus the fact that I bit my tongue during the operation and it took a few weeks to fully heal, my sense of taste has been really off. Foods that should be bursting with flavor are bland. Salty barely registers, and sweet is almost nonexistent. It’s gradually picking up, but I’m really beginning to appreciate my sense of taste!
As for my rehabilitation, Physical Therapy (PT to those of us in the know) is helping me a lot to adjust to the dizziness. They tell me, though, that my nerve will never un-stretch, so it’s a matter of me adjusting to the new norm.
The scar is also clearing some, and Tara is having me put on sun-screen on my neck every time I go out. Speaking of which, I had a big weekend, going out to my favorite Indian restaurant for lunch (which helped with the taste problem) on Sunday and to the mall on Monday! Big Adventures!
Between all the sleeping while I let my body recuperate, I’m catching up on a lot of TV. Tara and I watched all of Top of the Lake, which was amazingly good and I highly recommend it. We’re on Arrow, which was a bit slow at first but picking up as the season progresses. When Tara is not around, I’m watching one of the best American TV shows of all time, I Spy with Bill Cosby and Robert Culp. Although its a very simplistic good guys v. bad guys theme, the banter between the two stars is priceless, and the show actually got into some pretty deep issues, especially for the mid–1960s. If you’ve never seen it, it’s available on HULU.
So, I’m still humming along, and still gob-smacked by the kindness of my community and the support they are providing for Tara, the kids and me. Thank you all.
Be well, do good work and keep in touch…
Gaining your sense of balance back is a remarkable adventure. It’s now three weeks after having my nerves played on like banjo strings, and I’m still walking around like I’m half–drunk. Half–drunk but without the great euphoric feeling you get before the hang over. Now, everything I do is an adventure: Going up and down stairs; showering; getting a drink in the kitchens; carrying… anything. And don’t get me started on going outside.
But the recovery moves along, and I did, indeed, even have my first adventure time out of the house on Sunday, when Tara and I went to meet the wonderful Martha at a near-by Starbucks. It was wonderful being outside on such a beautiful day. I got to get out of my PJs and robe and wear my big boy clothes for a while, and it almost felt normal. Normal except for the big scar running down my head onto neck, that is.
Despite what the doctor said, I feel fairly certain that I will have a noticeable scar on my neck — Tara tells me that the picture she took after the operation is not suitable for polite public consumption so I’ll spare everybody. Not that I’ll mind that so much. As the saying goes “Scars are just tattoos with a better story.” But some advance warning about that and the small titanium plate they put in my skull would have been nice.
In fact, I was not 100% confident that they didn’t just take out a big hole in the right side of my head. Until the feeling started coming back this week, that is. As nerves mend and anesthetic clears, I can begin to feel again over. That’s a good thing, but another adventure as the pain creeps in as well.
But the adventure I didn’t expect — the one I’m most astounded and delighted by — is the continuing adventure in support we’ve experienced from all of our communities. I am overwhelmed by the kindness. People who are helping with rides, food, understanding, and warm thoughts. Thank you all.
I’m looking forward to getting out more in the next few weeks as I get geared up to go back to work.I’m still tired and shaky, but I’m starting physical therapy, and hope to see you all in person real soon.
Be well, do good work, and keep in touch…
I had my follow-up visit with my neurologist today. Both he and my in-home physical therapist — whom I met with yesterday afternoon — agree that I am coming along nicely. I’m still off–balance, tired, and spacey, but I’m not sure most people could tell the difference. Seriously, Tara and the kids are taking extremely good care of me: helping me up and down stairs, getting me food, taking me to doctor’s appointments and just sitting and keeping me company when I’m awake.
Talking to my neurologist today, though, we’ll take next steps carefully, putting off any decisions until I’m completely recovered. The most obvious option right now is something called the cyber-knife. Since it uses radiation, though, it’s a one time shot, so not something we want to use haphazardly.
This is apparently an extremely rare condition, and, as my neurologist kept saying, there is no playbook for what comes next.
The other great thing that happened today was I got my suture out, and my head feels a lot better. Having your head sewn together with a piece of plastic twine might sound comfortable, but trust me–It isn’t. I even think my hearing improved afterwards, and I know that the whooshing sound in my ear has decreased a lot.
Thank you to all of my friends who have reached out with their support. I appreciate all of you. Especially the ones who sent cookies ;-).
be well, do good work, and keep in touch,
A little over a week after I emerged from surgery, and I’m ready to write a little update. I just took some heavy medication, though, so I’m not really sure how long I’ll be able to last.
If you’ve been reading Tara’s updates, you’ll know that things did not go as planned. When the surgeons opened my skull, the expected to find a acoustic neuroma — a benign tumor on the vestibular cochlear nerve — which they were going to remove. What they found was a tumor on the facial nerve that could not be removed without complete loss of facial function on that side.
I asleep during all of this, though. The last thing I remember was walking back with Tara. The next thing I remember was waking up in the ICU wondering where Tara had gotten to.
The next few days were not particularly pleasant. Fortunately I also don’t remember a lot of those hours. I was sick for 26 hours straight—waking and vomiting, waking and vomiting — and no water. But once I got into recovery things started getting better, especially once Tara could stay with me and I decided to come home Saturday after my family visited.
I’ve been mostly sleeping the last several days, with my family taking excellent care of me. I still feel as weak as a bag of kittens, but feeling stronger everyday, and just thankful to be through this segment.
So, I got the operation, but no resolution. Yes, I’m trying to take this as well as possible. I’m told that there was no way of knowing this was inoperable without the operation. There are always other options, though, and, once I’m back on my feet I’ll start exploring.
Well, Jason decided the food is better at home, so when the docs gave him the option of leaving today or tomorrow, he chose today.
He sits up often, is eating fairly well, and can walk around the nurses’ station twice before needing a long rest. (This post sounds awfully similar to things I said when the children were babies!) Regardless, he is working hard to regain strength and balance.
He is very, very tired, and the nerves are waking up. He is feeling more pain, but he is also more conscious. He loves hearing what is happening in the world of our friends, and he appreciates all of your support and warm wishes.
The dizziness is part of the docs lifting up his equilibrium nerve and checking things out during surgery. As are the balance issues. PT and OT will come to the house to help, but mostly it will just take time, time, time.
And snuggling from children, which is in much greater supply at home. Along with delicious food from Nana and Dodo, and a new bathroom floor from Papa! We are well loved, and it means the world to us.
They finally found a med for Jason yesterday around two that quelled his nausea. So, after 26 hours post-op of awful sickness, he found some rest.
This also allowed him to take some better narcotics, to relieve some of the pain. To get to the location of the tumor, the surgeons had to cut through neck muscle before they could proceed upward to the skull. That comprises most of his pain.
He is dizzy and still nauseous, but eating a tiny bit now. He has stood a few times. He held a fuller conversation with me today, with his eyes open for the whole 10-15 minutes.
Today he is tired. Thankfully he is sleeping, and with rest comes healing. His nurse is amazing, and the Georgetown staff are so kind. Our community is beyond words. All I can say to you is, thank you.
Finally got into recovery to see Jason! He was still so sleepy, and actually quite a bit ill. He said three things to me, in this order (with nodding off in between):
1) My eyes aren’t working right.
2) How are my children?
3) I’ll take you dancing.
They gave him the really good stuff.
So… the latest:
Jason’s diagnosis has changed. He no longer has an “acoustic neuroma.” He has a “facial nerve tumor.”
They are biopsying it. Soon he will get concentrated radiation to hopefully reduce the size and cut off blood flow, thereby virtually ending the effects of the tumor.
He has been in recovery for a long time, and I jus found out it is because he is sleeping so soundly. If I have to wait until he wakes up to see him, it will be next week :-)
Friends and loved ones of Jason CranfordTeague, here is the update:
Surgery started at 8:30.
The neurosurgeon just walked out to tell me that while Jason’s life is not in danger, there is a very real curve ball.
The tumor is not attached to the aural nerve primarily. It is attached to the facial nerve.
They will not be able to remove the tumor, as that would mean complete loss of facial nerves and movement on the right side of his face.
They are widening the canal for the tumor and the nerve cluster, so there is less compression.
After he heals from this, we will have to find an acceptable time for the cyberknife surgery, where radiation shrinks the tumor and cuts off blood supply. It is not a great option under normal circumstances, but it is the only option under this 1 in a 1,000 circumstance.
ICU, hospital stay, recovery time still remains the same.
Good thoughts, love, prayers, well wishes, and friendly vibes are all appreciated.