Jessie and I are thoroughly pooped. What a great day and great motivation heading into my last full week of radiation and chemo. This is a huge, Huge, HUGE, THANK YOU (!!!) to everyone that has supported us as we have progressed through this ordeal. From all the offers of; if you need something call, the meal train, our friends and family that came from far and wide to visit and participate in the the tumor walk, EVERYONE that donated and helped fund raise for the walk. I NEVER expected anything like this. I knew I had great friends and family and that they would “be there for me if I ever needed it” but I never thought I would “need it”. I cannot express enough how touched I am when ever I am in contact with any of you. Your generosity is greater than I can thank and I appreciate it so much.
Going to the tumor walk today I saw that same level of support in dozens of groups and families. It is amazing how we can rally around to support each other in times of need. It is extremely encouraging to see other survivors thriving and inspiring others as this can be a terrifying ordeal. I was not comfortable being up with a group of people deemed Tumor Survivors. I don’t feel I have survived anything. Everything has gone so well and it has been such a short time I don’t feel like I have been through the gauntlet that others have. While I hope I don’t have to, I am constantly worried that it will get worse at some point. That nagging feeling that all has gone too well so that something bad is bound to happen. Of course we intend to keep the all’s well going for as long as possible and hope to put this behind us soon. Sadly with Brain Tumors I don’t think you really get to live that life.
It has been a great weekend seeing everyone and just having a good party. We love to host and feel so comfortable in that environment. Next time, I am going to have a beer! And thank you all so very much for everything. I honestly cannot say that enough.
So here we are, Brain Tumor Walk weekend. Time sure has gone fast. I have a week and a day left with Chemo and Radiation. I feel great but look forward to the break. Just to get off some of the pills for a while. I feel like we are getting the Ketogenic diet dialed in a bit. Going back to work, and I never thought I would say this, has been nice. It helps to have a good routine again and feel like I can still contribute. Honestly I think my brain is working better than before. Maybe diet, maybe getting something removed that was not supposed to be there, maybe the slight decrease in stress knowing what you are dealing with vs guessing. Not sure but I will take it….
First, before I get distracted (you know those butterfly thoughts…), I want to say the biggest THANK YOU I possibly can to all of those that have supported Team Food Baby in the Tumor Walk (hell, and Jessie and me in general). In a very short time we have raised over $4100. For those of you doing the walk I really appreciate your time and support. Getting up early on a Sunday morning and walking around downtown Portland is not my idea of a great time. So far the walk has raised over $88k, with the top 10 teams raising 3/4 of that (we are pretty solid at #5 thanks to you folks). The more I have learned about cancer, tumor, health research in this country the more I realize it is people like us that make the difference. The government cannot fund all of it. Drug companies need to make money so they only want to fund what can generate a return. So it takes the public that has been affected in some way help push the research forward.
I found out this week about an amazing event in Ohio called Petotonia. It was created to help fund cancer research at the Ohio State University. The brother of a good friend is riding in it this weekend. Since 2009 this event has raised over $119 million for cancer research at Ohio State. My friend shared with me a story about a researcher at OSU that had a new way to treat GBMs (what I have) and could not get funding from any government source. This group gave him $900k to fund the research. Maybe one day I can participate in this event as I would rather ride my bike for 100 miles than walk around downtown Portland.
- Info on the event -> Link
- Link to event page -> Link
- If you want to donate here is Vince’s fundraising page (it is never too late) -> Link
Oh and while I am on the soapbox I would like to highly recommend the book, The Emperor of All Maladies: A Biography of Cancer (Amazon). There is also a great three-part series done by Ken Burns, of PBS documentary fame, on Netflix basically covering the book. I find it amazing to look back at the history of our fight against Cancer and see the theories from the 1920’s still being used today. I experience it every day when I get my radiation treatments. Fascinating stuff.
Sorry quite the detour there from where I wanted to go with this post. I wanted to add, I am very excited to see my sisters as they are coming to visit and participate in the walk tomorrow. It is such a great feeling to have so much love an support when you are faced with a horrible life changing situation like we are going through now. I cannot express how great everyone has been. If I could say one thing to all of you reading this, don’t wait for such an event to love and appreciate those around you. Make time for it regularly, I know life gets busy and it can be expensive or time consuming but the people in your life are what makes life worth living. Don’t take that for granted.
All in all – I think we are in a very good place. It has been liberating to get back into the gym and feel my body responding to the workouts. It takes a bit longer to recover but I can feel my strength returning. Racing starts soon and I hope to be ready. Shooting for Sept 7th for my first race. All I have to do is ride my bike in circles for 30 mins and not finish last!
Well it is another of those – bing wide awake mornings. With this Ketogenic Diet and all the drugs constipation is a constant concern so one of the ways to battle that little problem is to drink an enormous volume of water. From the time I wake up I literally pee every hour on the hour so it is almost impossible to make it through the night without having to make a trip to the restroom. This often results in me wanting more water so a trip to the kitchen for yet another glass and the cycle resumes. Because of my late night wanderings, and all ambient light, I am left more awake than sleepy and thus toss and turn once I have returned to the bed. Tonight (well this morning really) was even worse as I was really mad at myself and I could not let it go. Now I have fodder for another post.
Last night we went to Portland Brewing for the weekly Geeks Who Drink trivia night. It is held there every Saturday at 7pm. Portland Brewing will also do something pretty cool and will allow fundraising events where they will donate portions of the bill to some worthy cause. Last night was a fundraiser for the National Brain Tumor Society and seeing how I have a brain tumor Jessie thought we should go. (and to be honest we like beer, even though I cannot drink we feel pretty at home in a brewery and I miss them)
Jeff, Jessie, Frank, and myself went as representatives of Team Food Baby. The host did a good job mentioning this was a fundraiser in conjunction with the standard trivia night. There was a representative from the National Brain Tumor Society (NBTS) and she said a few words, gave some facts and figures, and we started in with the trivia. Once the game ended and the waitress came by with the bill Jessie mentioned something to the waitress about the fundraiser. The waitress said I am glad you mentioned that as we need the customer to say something to apply the donation to the charity. I thought seeing how this was a “fundraiser” that all that would have been arranged in advance so I went and asked the rep from the NBTS if we had to specifically say something to the staff. She said that was a good point and would say something about it to the group.
The whole time I was there I did not see anyone that appeared to be there due to a brain tumor and felt like I should say something. This is part of my general struggle with my situation. Do I get involved? How much? To what level? And why? I am sort of a private person and like to keep things to myself and not be a martyr or a hey look at me I have this horrible thing and I want to make you look at it and make you uncomfortable because of it and guilt you into doing something you don’t want to do because of me and my thing. I never liked it when others did that to me. Frank said something to me this week as I expressed my confliction about my situation and he said, in general, if you are not part of the solution you are part of the problem. I felt compelled to stand up last night and help drive the point home that Brain Tumor suck and they can happen to anyone and implore those people to help out by tossing a few bucks into the kitty. Did I do it? Nope and that is what bothers me. Why didn’t I?
And that is why I was tossing and turning all morning. I am not shy; I don’t have a problem talking in front of a bunch of people. I have a good story to tell so why didn’t get up and say something. I am sure we could have gotten a few bucks more. Brain tumors are so rare and the numbers pretty low they did not get much attention a few years ago thus research is way behind. I had an opportunity to help out and I did not take it. I consider myself very lucky as I have not been debilitated (yet) from this disease and many people are. I need to take advantage of my good fortune while I can and do what I can. I will not make that mistake again and will work hard to be an active participant in this fight to find a cure.
It’s good to have a cause right?
So, those of you that are seeing this on facebook, can you do what a couple of my friends did and share in your feed, the link our team page, and say: Hey a friend of mine is in a shitty situation and there needs to be more research into brain tumors. Cut into Starbucks (or Budweiser or Coors it’s shitty beer anyway) profit and skip that coffee (beer) this week and send some cash to fund brain tumor research. You might just make a difference.
Team Food Baby Update:We have raised an incredible $1405 for the National Brain Tumor Society! Wow!!!!!! Thanks so much to all the generous people who have donated! Can you help us get to $1500 today? There’s still plenty of time to join the walk or donate! I set up a separate group-Team Food Baby on Facebook if anyone wants to join. We are currently coordinating one of the next two weekends for a team BBQ and viewing of the movie Juno. Here’s the team link to join or donate. If you want to join the FB group for our walking team, send a request to the group. If not on FB, send me an email at firstname.lastname@example.org and I will keep you updated on team events.
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.
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!