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. 

Jun 042016
 

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.

Jun 032016
 

Trying to give birth to my food baby. Have walked the halls, having contractions, it is kicking like mad. When you ingest a bunch of food and all the tools to move it along and things are just bound up the cramps are horrible. Done all the recommended treatments but to no avail. Stubborn food baby. At least I know it is mine. Good god this sucks. I can go home if I just drop a duce. A bouncing food baby.

Jun 032016
 

I have to say how impressed I am with Nurses. I don’t think they get enough credit or thanks. My nurses did not bat an eye when I projectile vomited all over the bed. They apologized and just cleaned it up. They really are special people. Being constipated from the anesthesia and meds again a nonchalant do you want a suppository and bloop right in there. No big deal. It sure was a big deal to me.  Everyone we have dealt with has been so kind and willing to do the most menial task. Just to help my comfort. Makes me feel uncomfortable having someone dote on me so much. I am pretty much a leave me alone I can take care of myself person.  All of the staff ay OHSU has been great.  From the cleaning folks to the food delivery. They always seem concerned with your wellbeing and so willing to help and provide positive encouragement. The other thing is they don’t come in and say you will do this and you will do that. It is more of. Do you want to try this or try that. I am very inclusive into the treatment plan. And they keep me abreast of what worked last time and ideas going forward. So happy we treated here.

Jun 032016
 

Still waiting… Moving on to the magnesium citrate vs milk of magnesia but his discomfort is better after a good night’s sleep. But we are going home today after a shower and hopefully some movement.

Pathology not in (or not enough to tell us) so we wait another week. They did say they still think and hope it is an oligodendroglioma and he is getting a referral to neuro-oncology and will need some sort of treatment once the incision heals. 

So… On on home!