I’ve been trying to upload the pic all day and it’s not working. 4.4 mile flat hike at Dry Creek Falls. (This is where you use your inagination to picture a very happy and healthy looking Tom standing in front of a waterfall with our dear friend Torgy).
All posts by Jessie Kincaid
Now we fight!
Yesterday was a serious blow to our morale when we received the diagnosis of grade IV glioblastoma. The surgeon repeated what he said after the surgery-they got all of it -which actually means 95% or better. It is impossible to get it all, so now we meet with the oncologist and radiologist next week to determine the chemo and radiation he will undergo. Personally whatever # the oncologist gives us next week I don’t really care because we will beat it.
Yesterday was tough but the pity party is over. Last year when I was going through a tough time someone told me, “You are strong.” It became my mantra and helped get me through one of the toughest years of my life to date. Yesterday I shared that mantra with Tom. He is strong, even stronger than I am. WE-everyone reading this now is strong and we will get through this. Tom comes from a line of some of the most stubborn people I have ever encountered (love you Birds!!!). He is going to fight and we need you to fight with us.
Here’s the part where I get selfish-I want this incredible man to live a long life with me. On August 7, 2016 we are participating in the Portland Brain Tumor walk. We would like you to join Team Food baby or consider making a donation. Here’s the link to join.
http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/PortlandBrainTumorWalk?team_id=78344&pg=team&fr_id=2735
I spent the morning researching this group and they appear to be legit and use their funds well. Feel free to donate to Knight Cancer institute or any other cause near to your heart. Today is a day where we can start making a difference!
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!!!
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.
Time to go home!!!
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…
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!