Jun 172016

We had our two week follow-up with the Neuro Doctor.  While he is very pleased with my progress from the surgery the results from the tumor are not good.  They have classified it something much worse than we originally thought.  What really sucks is to have everything going so well we were positive the news today would be better than we expected.  Now that they are worse it is like a punch in the gut.  There is nothing positive about this thing they pulled from my head other than it was removed before it was causing me any serious issues.  That is the only good news so far.  The treatment will be the same as what they originally thought it was so Radiation and Chemo here I come.

The one good thing is I can start some light exercise so get on my trainer.  I am still not supposed to lift anything greater than 15 lbs but at least I can get my heart rate up.  He said in 4 more weeks I should be able to do normal activity and all the stitches should be dissolved by then.

Everyone has been so great so far with both Jessie and I thought this and we really appreciate it.  Going forward we will really need that love and support even more.  We have a tough road ahead.  The plan is to become the outlier and prove all the statistics wrong.  My goal is to look at this 20 years from now and say what was the big deal….

Jun 172016

First the food has been great.  One less thing for us to stress (well Jessie really) about.  She is the one that needs our support.  I just get to lay around and heal and read and eat and read and heal some more.

While the food has been fantastic, seeing everyone each night is something I really look forward to.  It is very positive and uplifting as we go through this.

Probably starting chemo and radiation next week – we see oncologist Wednesday.

Time to research all those cancer fighting foods!!!

Jun 102016

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.

Jun 092016

Miyazaki film festival for Dianna with our nightly ritual of Tillamookies.  So far we have worked through:

My Neighbor Totoro


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!!!

Jun 072016

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.

Jun 072016

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.

Jun 052016

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.