Basically been recovering and doing well. Better than expected really. So what to do they say, no news is good news?
Humbled by this experience
Every day I am amazed at the generosity of my friends and family. I have no idea how I would have gotten through this without such awesome support. I got my call today regarding my oncology visit. Unfortunately the girl was just a scheduler and could not tell me anything. I am scheduled with the head of the department so he should be well versed in treating and should be up on the latest and greatest treatments. Dr Edward A. Neuwelt
My followup with the surgery group is next Friday. Not sure what they are planning to discuss.
Tomorrow I will have been home a week. I have been so lucky to have my big sister Dianna here to help out. I would have been going crazy just sitting around. Not sure how I am going to last the next couple of weeks. My ass is tired of sitting down. You can only read so much. Glad the pain meds are dwindling.
I cannot wait to go to the gym. The hardest thing is to try and stay somewhat healthy when you cannot lift or pull/push anything greater than 15 lbs. And all the amazing food everyone is bringing does not make it easy to keep the weight down.
And thanks everyone the food has been a fantastic gift and has been so good. I look forward to the visits every day.
Physically I feel like I can go get on my bike or go for a hike but every once in a while a cough or bending over reminds me that some serious work was done not too long ago.
Goings on at our house…
Miyazaki film festival for Dianna with our nightly ritual of Tillamookies. So far we have worked through:
My Neighbor Totoro
Ponyo
Kiki’s Delivery Service
Howl’s Moving Castle
Princess Mononoke (in progress)
We’ve also experimented with some outings for Tom with mostly good results-short errands-walk at the park and two outings to the nursery to pick out plants (thanks to Shirley!!!). Also thanks to Dianna for planting most of them already.
Dianna has been indulging Tom in getting many of his wish list items-the other day she built his worm/compost bin and much to my chagrin, today 2000 red wigglers showed up to take residence in our garage. Can you feel my enthusiasm? :/
Another big thanks to the Meal train. You are all such incredible cooks! I am so thankful Tom is not stuck with my crummy cooking during this and it freed us up to focus on him since we don’t have to shop or cook and clean-uo is minimal. The visits really lift spirits too. We are super grateful for all of you!!!
One week ago
One week ago i was waiting to go into surgery. They told me you will not remember any of this. Well they were wrong. I remember all the presurgery checkout. One of the funny things is you are in a large room with 4 other beds and a sheet for privacy. All you can see is peoples feet. And their shoes. My surgical nurse needs new shoes. They were pretty ratty. To me they were filthy and not something you should wear into surgery. I wanted clean fresh shoes. That tells me you have an eye for detail and are clean.
Getting wheeled into the operating room. They could not get the table to move up and down. The anesthetist did not want to knock me out until they got the table fixed as it would be easier to move me if I was still wake. Eventually someone realized it was not plugged in. I yelled out reboot it. And they got a kick out of the patient telling the operating room staff how to fix their problem.
On the way to the operating room i was freezing. I chatted with one of my anesthesiologists about biking. Mtn vs road and about Cyclocross racing. He had heard of cyclocross but never been to a race nor was he interested in trying it.
I don’t remember any of the surgery just everything leading up to it. I remember bits and pieces from the recovery room.
They also said put me in feet first as the room was very small and I had to scooch over on to the surgery.bed. My nurse screwed up and put me in head first and they gave him a bunch of crap about which side my feet were on. (they were the bits with the socks on) The surgical bed s cold and uninviting. All stainless seel, narrow, had a little air pillow for my head. Straps to hold me in place just in case I try to roll out of bed i even remember what looked like a mesh drain.
I was also shivering uncontrollably. Not sure it it was nerves or just feeling cold.
To this day I am amazed how fully functional I am. All of the “stuff” we read and expected did not really come true. That makes me optimistic about future as everyone is so different and react differently than others. If I did this well with the first surgery how will I react to everything else? I hope just as well.
People like updates
After the great Krakan event of 2016 he went back into hiding. Some Milk of Magnesia was utilized to flush him out again. I would prefer he stays a consistent contributor.
One week ago right now
We were in Bed trying to sleep before getting up at 4:30am to shower before being at OHSU at 6am. Surprisingly we both slept pretty good.
Balance
Tom has been doing really well since we got home. Visitors keep commenting that he doesn’t even look like he had surgery (except for the scar which looks better everyday). He is pretty much the same as before but with several physical restrictions and can get tired or have pain from overdoing it so I am glad that Dianna is here to help me keep him in check. She has been amazing and is whipping our yard into one that is typical of the Bird family (gorgeous yards). I think that is it for updates for now. We are hoping to get into the oncologist this week and will f/u with the surgeon on the 17th.
Visitors
Visitors are welcome and encouraged! Just please check in with me first for availability.
Glad to be home.
What does Dorothy say, “There is no place like home” I agree. While everyone was wonderful at OHSU it was not where I wanted to be. When you have to go somewhere. It is never as fun as the place you choose to go to.
While I finally pooped and was allowed to go home. Great news. We saw on the release papers something that we were not too happy about. They still think my tumor was an Oligodendroglioma. They think it is a stage III Anaplastic version that is a bit more aggressive than the typical run of the mill Oligo.
They are still waiting on the genetic testing to determine the treatment plan so fingers crossed it is the type that is more susceptible to certain types of Chemo and Radiation therapies.
So not out of the woods yet. Still a long road ahead and this was just the start. So glad we did not take the wait and see approach. And again everyone is different and might not have the same situation we are in. So what may work for us may not work for others.
Time to study up on my chemo treatments.
Time to go home!!!
