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.

I should be in the maternity ward

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.

My Observation on Nurses at OHSU

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.

Day 4-morning update

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! 

Evening update day 3

Still waiting for the Great Pumpkin (sorry Mike-it was a false alarm while you were on the phone with him earlier). He’s getting pretty uncomfortable, so far today we’ve tried coffee, prune juice, miralax, walking, suppository and we are back to more miralax. In better news, he enjoyed visits from his dear friends Frank, Mary, Jeff and Don and new friend Hunter the therapy dog. Nothing else new other than that he’s walking really well and looks great (but I always thought that). 

So I’ll just take a note to thank you all for your emails, messages, calls and encouragement. It is really a big relief to know we have dozens of people ready to provide assistance at a moment’s notice. 

Huge thanks to my dear friend Torgy for meeting me early am on Tuesday with a jalapeno cheese bagel in hand and keeping me sane during some of the scariest hours of my life.

More thanks to Tom’s sister Mary for giving me a short break yesterday so I could go home and shower and grab some more items from home.

Thanks in advance to Dianna for coming to help out the first week of having Tom home. We are going to have our work cut out for us to come close to the standard of care that he has been accustomed to here. I’ll rock paper scissors you for the next round of suppository if we don’t get things out tonight 😉

But speaking of care, I am so deeply grateful for the high standard of care that all these men and women have given my beloved. We could not ask for more. My own mom was a nurse and many of my friends are nurses and I am humbled and amazed by what superheroes you all are! 

Tomorrow we *might* get the pathology results and get a glimpse of what phase 2 of this journey is going to look like.

Until then…

I feel pretty Lucky

I have to say I feel quite blessed with how this whole thing has gone. I am on the 10th floor and that is the Neuro ward so all people with brain issues. Heck even when I was in ICU. People did not look good. I am so glad Jessie and I made this decision to treat while I am young and healthy. I think that has made a huge difference in recovering. I also feel like having a good attitude makes a big difference as well. Plan for the worst and you are happy when it is better than expected. And thanks everyone for the support. It is humbling and amazing to have so many good friends and family.

Day 3 update

I have to say I feel quite blessed with how this whole thing has gone. I am on the 10th floor and that is the Neuro ward so all people with brain issues. Heck even when I was in ICU. People did not look good. I am so glad Jessie and I made this decision to treat while I am young and healthy. I think that has made a huge difference in recovering. I also feel like having a good attitude makes a big difference as well. Plan for the worst and you are happy when it is better than expected.

Visitors

Today we had a visit from Hunter the therapy dog. I could get behind that. He was so nice and gentle. And soft. I guess the Humane Society trains them and sets them up with Volunteers to go into the hospital with the dogs.

Morning update-day 3

Doing great!!! Up to four walks total with the walker now and having less of a headache after each one. Had a better night. A little nausea this morning but no Linda Blair episodes. Pain is mostly well managed. We are still waiting on the Great Pumpkin-which is not actually needed to go home since he is not on narcotics. We saw a neurosurgery PA this morning who was really pleased with his progress and technically he may be able to go home today but we are staying as we would feel better with more observation, would like to get the nausea completely under control and try a new pain med in this environment as they want to send him home with something stronger than the tylenol that he’s been sticking to as all the iv pain meds make him ill. He’s had some odd sensations in his head but ther PA said those are normal. So looks like if all continues to go well we will be bringing him home tomorrow!