Yesterday was another MRI day. How accustomed we’ve become to these almost day long affairs at OHSU. Tom says he can nearly fall asleep in the MRI tube now except the tech warns against it as people snore and ruin the image. It was also our one year since meeting Dr. Jerry. Last year when we met he gave us cheese. This year he entered the exam room with chocolate. I can’t imagine making it through the last year without him. He pointed out all the changes in tumor grading and trials that have taken place in the last year. We are in a much better place than we were a year ago if the tumor comes back. The scan was clear by the way! 😊Whew! By the time of his next scan, Tom will have completed 12 cycles of his chemo. The doctors said if the next scan is clear, we can consider discontinuing the chemo and the Optune device. It’s an exciting prospect to think about.! The Optune while non-invasive, drives Tom absolutely crazy so returning to life without it would be a real gift. After holding our breath for a year+ it’s weird to be able to let it out a little bit. We are so thankful to be sitting in this position after the past year and continue to dream of a brighter future. As always thanks to you all for your support!
No-Li July at The EastBurn
Just over a year ago I was diagnosed with a Glioblastoma (GBM) one of the worst primary brain tumors you can have. As anyone with some form of cancer can tell you, receiving the news elicits a whole range of emotions. While my fiancé and I were shocked and saddened we quickly realized education was the key to dealing with this new obstacle in our lives. We threw ourselves into learning about brain tumors (and cancer in general), modern western treatments, and adjuvant care that might not be as accepted in today’s oncology departments. We quickly realized this task can be overwhelming and lead you down some dark holes.
When presented with a life altering disease many people realize research is key to finding solutions to their specific ailment. Through our research we came across the National Brain Tumor Society (NBTS) and found brain tumor research is woefully underfunded when compared to the other more well-known groups. This probably has a lot to do with the fact brain tumors are still pretty rare and people with them often don’t last long.
Portland has an annual walk as a fundraiser put on by the NBTS. We quickly mobilized a team “Team Food Baby” (it is an inside joke) and in a very short time became one of the top fundraising teams last year. This year our plan was to do even better.
Anyone who knows me can tell you I love good beer and food. Jessie and I attended almost every Beer Belly dinner The EastBurn had over the course of 5 years. Beer Belly Dinners are a multi course event where each course is paired with a beer from a brewery chosen for the event (great idea right?). After becoming “regulars” we became friends with the staff, owners, and chefs at the EastBurn. They are fantastic people, actively involved in their community, and with various charitable organizations. The Beer Belly dinners evolved over time and eventually became fundraisers for a charity chosen by the brewery. We thought maybe the EastBurn could do one for us so I contacted Mike and Josh at the EastBurn.
I was truly overwhelmed by their response. They felt a Beer Belly dinner was not enough and planned a whole fundraising month paired with my home town brewery No-Li. While I could ask you to donate to our team on the NTBS website (and thanks if you do), I think it would be much more fun to have a beer in honor of fighting brain cancer. The EastBurn has several events lined up kicking July off with a BBQ and a Corn Hole Tournament this Saturday July 1st from 3 to 6. Yah it is 4th of July weekend so for those of you staying close to town swing in, have some beer, BBQ and throw a bean bag around. Here is the best part:
EVERY Pint of No-Li beer sold in the month of July will send $1 to help fight brain tumors. Think of it as every No-Li beer you drink a researcher gets their grant. (that sounds better than a bell, angel, and wings)
Be sure to check the EastBurn events page throughout the month and SAVE THE DATE for the Clackamas River float on July 30th to close out the month.
I don’t think anyone with a horrible disease will ever be thankful for it but I have been truly blessed with an amazing outpouring of support and friendship over the past year. It is difficult to personally thank each one of you that has helped me in some way so just know I have appreciated every kind gesture sent my way.
If you want to get a beer and help stamp out brain cancer please let me know. I will be happy to join you at The EastBurn.
Thanks! Tom & Jessie
What is it about Anniversaries?
They really are a static point in time that we pin some value on. Birthdays are the same thing. There is no intrinsic value to have them just a way to mark time off a calendar or track progress or what I like to do, reflect on the past, present, and maybe what the future may hold.
One year ago today, the day after Memorial Day, which happened to be May 31st – so there is an argument is an anniversary the day of the week something happened or the actual date something happened… ponder that for a moment – (and I have always wanted to say this), but I digress. My anniversary could be considered today or tomorrow so I am going to pick both. So, one year ago today I pulled up to this cluster of buildings on a hill in the wee hours of dawn to pop in for a little nip and tuck of my brain. Even a year later I can remember the entire morning, the conversations (not verbatim but pretty good), the veteran pre-op nurse that gave me confidence, the transfer that put my IV in he worried me asking a bunch of questions and did not know how they normally do things (BTW that IV was uncomfortable during my entire stay), the THREE respiratory therapists I would have (that is what happens at a training hospital) and the surgical nurse with the dirty shoes. I mean seriously dude, you are going to be in surgery with my BRAIN exposed, yah I know your feet won’t be anywhere near my brain BUT get some clean or newish shoes, I am sure you are well compensated. They looked like he used them to walk through forest park to get there or uses them to mow the lawn.
While they ALL told me I would not remember any of this I sure did. I chatted with the guys about Cycle-cross as they wheeled me to surgery. The team in the room said to bring me in feet first as they wheeled me in head first so we had to back out and turn around. I wiggled off the gurney to a freezing cold stainless steel table with this red ball to rest my head on. The “don’t put him under, the table is not working” comment. Me saying, “did you reboot it” – them saying “great the patient is telling us how to fix the table.” My next comment, “is it plugged in?” as they are discussing how to replace the table with a new one, moving me to another room, where is the maintenance guy, followed by oh, it was not plugged in we are good, its working, you can knock him out now.
I wake up in recovery and feel pretty good. I am very thirsty and hungry and my fear of being attached to a breathing tube is relieved. Honestly that was my biggest worry waking up with a breathing tube jammed down my throat to have them pull it out while I was awake. They asked if I wanted to call Jessie so I did. The rest of the day was waiting to get a room, a post op MRI, a pig out on dinner, realizing my innards did not work yet, that dinner coming right back up and spending the rest of the night flowing in and out of conscious. Dilaudid gave me some wild dreams that still wig me out a bit. Personally I did not like being on that stuff.
The rest of the week continued and I never ceased to amaze everyone with how well I was doing. So now a year later and I still get that amazement but I cannot help but worry when is that amazement going to end. I try to feel, act, be, as normal as everyone else but that is just not the case anymore. There is always a reminder of this giant change in direction, no matter how I ignore it, won’t go away. As I pull into the garage I hear on OPB about the writer Brian Doyle from Lake Oswego has just passed away. He was only 60 years old. April Baer was reflecting on some interviews with him, some of his accomplishments, they even played a little reading he did back in 2010. The book he was most known for was Mink River and that is when I realize who he was. I remember that book from the Lake Oswego Reads program. it was the summer selection from 2012 and I always wanted to read that book. (Actually I think I have it and I think I started it on a trip somewhere – will have to look through the bookshelves) I was sitting in the car listening to the story about him, just as it ended the OPB lady asked April about how he died. He was diagnosed with Brain Cancer back in November and died yesterday.
So my one year anniversary gives me a lot to reflect upon. I am very thankful for all my friends and family that have helped me through this. The management at Con-way that supported my recovery so I did not have to live in fear of job issues. The amazing recovery staff at OHSU and all the people that helped support us and our Team Food Baby fundraising for the tumor walk. To my sister Dianna taking great care of me during recovery and working around our house. She was just as busy as a bee the whole time. To Jessie for being my remember all and doing the worrying for me. Plus, she had to haul me around as I still recovered from the vertigo that led to the tumor discovery in the first place.
I have made new friends along the way, Dr Jerry Jaboin who provides the encouragement I need and often reminds me, I am not a normal Brain Tumor patient. Jessica Morris, another Brain Tumor Survivor that is 5 months or so ahead of me. She is showing me how to stay strong throughout this. You can check out her blog here-> https://jessicamorrisnyc.wordpress.com/ I find it interesting how the experience she had, while similar to mine, was quite different. She had music during her radiation treatments but we both visualized those little tumor cells getting zapped.
While I have no idea what my “expected” life expectancy is anymore I know I have gone beyond the “google GBM life expectancy” search. (EDIT: that is no longer true, last year it was 7.9 months, now it looks like 14.6 months so I have some time before that anniversary). My plan is to have MANY more May 31st anniversaries, 9/9/2017 anniversaries, 12/5 anniversaries, 3/23 anniversaries….
you get the point
So on my first anniversary of an amazingly successful surgery I cannot wait to write about my second anniversary and how thankful I am!
Yay today was MRI Day
[for you TL/DR people: MRI was good next one in two months]
This has gotten so mundane that I don’t even post about it anymore. Life just plugs along with the daily inconveniences of wearing sticky, itchy, annoying pads on my head. I am sure they will be even worse when it gets hot in summer. I had a great visit with Jessica Morris in NYC. She is a few months ahead of me and is an Optune wearer. She had problems with the pads overheating in the summer last year. So another thing to look forward to.
My Aunt Chemo still comes to visit for 5 days every month and she love to bring along the constipation just to let me know she loves me. Jessie and I have gotten better at dealing with this little gem and it has gotten better each round of Chemo.
So onto the good stuff. The MRI went fine – soon I will be able to sleep in that clicking, clacking, booop booop booop tube. There are two machines they seem to put the brain people in. The one I had today must be a slightly different model since the tests sound and feel different. The technician was new and she asked if I get these once a year – HA! I counted all of the times while I was in there and I am pretty sure I am up to 12 now, 11 of those at OHSU, 1 at Providence when they found the tumor. I really don’t remember that one much since I was so drugged up from the vertigo.
Today was the first time I actually got to see my scans the same day as my scan. There are two types of images they use to “read” MRI’s. The contrast is what they use to see if tumor is regrowing. The good news there is it does not look like it. Plus there are these two open areas called the ventricles. that run down the middle lower part of the brain. My Doctor told me when a tumor starts growing it pushes good brain mass aside and that often squashes into the ventricle. Mine looks great so it does not look like anything new is growing.
The second scan they look at does not have contrast and is called the FLAIR. Without getting super deep into the weeds it looks at the substance of the brain based on how it reacts to the magnetic field created by the MRI. Fat will look different from gray matter vs fluid in the brain etc. I did have one area that showed up quite large on the FLAIR. They think that may be from the radiation treatment. They referred to it as Gliosis. I will talk to my radiation oncologist about it tomorrow.
So after all that, they are happy with the scan as far as tumor progression, cautious about the potential radiation damage (I am going to blame that for my CRS syndrome [Can’t Remember Shit]), and will have me back in two months this time. Personally I prefer the two month schedule. I want to catch ANYTHING early when it comes to this thing growing back.
Will update tomorrow with my “2nd opinion”
Links!
Links! Today was a good day for announcements in treatment for Glioblastomas. First, we started off with more awesome results from Novocure (Tom’s Optune device). Their stock prices surged too!
Next, I got an email from the National Brain Tumor Society regarding their Defeat GBM Research Collaborative. This is one of the reasons we support NBTS. There’s a lot of GBM trials in Phase III which is pretty remarkable and a due in large part to increased awareness and funding. I felt my hope surge today along with those stock prices that something promising on the horizon.
Potential Glioblastoma Treatments Entering The Pivotal Phase of Evaluation
Also another plug for the Portland Brain Tumor Walk on August 6. My birthday casserole cook-off fundraiser raised $1090! You all are amazing and it’s because of people like you that the above progress is being made. The organizers would like to do an upcoming feature on Team Food Baby but it would be nice to have more than two members on the team before I say yes. You don’t have to do actually do the walk to join Team Food Baby but there is a $25 fee. I know it’s a busy weekend and I wish they’d stop putting it at the same time as other big events like the MS Ride. Here’s the link to sign up!
http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/PortlandBrainTumorWalk?team_id=79557&pg=team&fr_id=2880
Tom starts another round of chemo tonight. We’ve definitely been seeing him get progressively more fatigued with each round but he has still managed to work full-time and make it to his spin class. Last month he told me after his workout he couldn’t remember why he felt so tired, then he remembered he was on his chemo! We’ve also enjoyed being more social as of late and cheating a wee bit on the keto diet with birthday cake and festivities.
As always, thanks to all of you. It means so much to have you all in this with us.
For all those NASCAR fans…
http://www.braintumorcommunity.org/site/MessageViewer?em_id=49954.0&dlv_id=48253
I love my Ted Talks
I have not really been posting that much. Jessie has been doing the main updating – I guess when you are living cancer you don’t really think about talking cancer. Plus, she is often waiting while I am getting treated for something so she gets time to post about it
One of the ways I like to cope with my condition is to study it, try to think about life differently, and maybe what I can do with it. Ted talks are one of my favorite escapes. I have watched a couple tonight (they are so addictive) and I wanted to share two as they really resonated with me. The first was from a notification I received from Ted about a new talk on my phone. This one is serious and humorous at the same time. I think it shows you how you can look at something with a different perspective and really learn something where you never expected you could learn from.
Lux Narayan: What I learned from 2,000 obituaries -> https://go.ted.com/CyvD
So if you want to accomplish something with your life you have on average until age 37 to get it done. So all of you under 37 get busy. And seriously watch this one. It is only 8 minutes, you will be surprised what you learn from it.
The second one is not so light hearted but it did give me pause to think. The article Jessie posted about the reporter with a Glioblastoma brought up some statistics that are hard to just ignore. While I hope to be, hell plan to be, that outlier or anomaly that lives 15+ years after diagnosis, that is still a long shot. Shit, I would prefer to be the exceeding rare “cured” GBM but wouldn’t we all. So this Ted talk helps reassure those of us (well me really) that know what will likely take my life prematurely. BJ Miller is a brilliant and compelling speaker. It is a little long but great story.
https://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life
I am by no means going to give up. But on average we all think we are above average so it is good to keep one foot grounded just in case you find out you really are just average.
Updates are important!
Updates-Tom has had a cold we’ve been trying to kick for nearly two weeks now. We thought we had it licked Sunday and he worked out yesterday and felt bad again last night and today. He’s supposed to start another chemo round tomorrow night but will re-evaluate that tomorrow. His labs have been good. Somehow I’ve got to make that guy rest! Overall he has been exercising a lot and doing well prior to the cold.
Also here’s an from a newly diagnosed GBM patient that struck a note with me today. Attitude is everything.
http://www.dallasnews.com/life/life/2017/02/22/going-like-fireworks-reporter-investigates-illness-brain-cancer-glioblastoma
Team Food Baby is Back for the 2017 Brain Tumor Walk!
Team Food Baby is back for the 2017 Portland Brain Tumor Walk on August 6. Please consider joining us or making a donation!http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/PortlandBrainTumorWalk?team_id=79557&pg=team&fr_id=2880
All clear!
“They” never said that the week before an MRI scan is a special kind of hell. From co-workers exposing Tom to a nasty bug to a question on insurance coverage, we came into this scan more than a little frazzled. Luckily Tom didn’t get sick and the insurance got straightened out so that just left the big one.I make it a point to go to the scans to show Tom support, but also because if there is a recurrence, all the stories of others say the tech has the patient stay put and a doctor is called. I was sitting in the waiting room toward the end of the hour and the nurse who is running the MRI trial Tom was in came and sat next to me and gave me (what I interpreted as a concerned look) and asked how I was doing. I made small talk and caught her up on all things Tom and then the paranoia hit me that she was stalling until a doctor could come see us. Then she said she was hoping for a good outcome on his scan for him and left. Whew. And they let us leave. We didn’t get any early “it’s all clear” signs that we have gotten before the appt so we waited the 24 hours getting progressively more nervous. The resident checked Tom out and said he was doing great and said he was going to just now go look at the scan with the head neuro oncologist and would be back. 20 min later they finally came in with “looks good!”. Whew!!! It took them awhile because they were debating if the cavity where the tumor was had shrunk since the last scan. It takes awhile for a week of fear to leave your body but we are feeling pretty elated now. They even bumped Tom out to every 3 months for scans vs every 2 months so another good sign that things are moving in the right direction. Tonight Tom starts another round of chemo and tomorrow we see our favorite, Dr. Jerry. As always, thanks to all of you for your support and strength! I hope to have Team Food Baby up and running for this year’s Tumor walk by the end of the week!