Jun 292017
 

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

May 312017
 

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!

May 042017
 

[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”

Mar 032017
 
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.
Jan 242017
 
So no new real activity lately and I guess that is good news – BUT – we are getting near the time to mobilize TeamFoodBaby. Last year with very short notice we put together an amazing team for the Portland Brain Tumor Walk. Jessie will be getting the team setup on the fund raising site soon (the walk is on August 6th) but I just wanted to share a great way to help participate in the best way possible, by drinking beer. Migration Brewing is doing an early fundraiser with a bunch of breweries and special collaboration food. 10% of the Event’s proceeds will go to benefit the National Brain Tumor Society. This won’t go into TeamFoodBaby’s kitty but heck, all you have to do is show up and have a beer and you will be helping out. IN the grand scheme it is all about finding a cure.
 
Find the details here: https://www.facebook.com/events/573264756196882/
Dec 302016
 

Now that I have a few moments to myself, I have some time to reflect on this year before we head off to where the year started, Mary and Gordy’s cabin, and some well-deserved down time.

My first thought, damn this was a shitty year.  While some good things happened for the most part I would love to forget it.  The best moment was right at the beginning of the year.  I should have known something was up when my proposal to Jessie did not go as planned and almost did not happen.  It was an amazing moment that I will never forget and I am glad I was able to do it.  Still to this day I remember saying to myself, this is going to be our year.  I was so wrong!

After that we had one of the most terrifying drives of my life.  What should be a 4 hour drive turned into 6 hours of white knuckle hell!  Car and trucks in ditches, a semi wreck causing a 6 mile back up on the freeway, then the Subaru completely out of my control sliding on the ice a little this way a little that way.  I thought, after 5 and a half hours now we crash.  Thankfully we survived that without a scratch.

Fast forward three months and the vertigo hits.  I have never been that sympathetic to people with “vertigo”.  I always felt it was a made up problem and while I never openly said anything to anyone, I apologize for those thoughts.  It was completely debilitating, I could not move or open my eyes without throwing up.  After the whole, swallow my pride and get help, I had an ambulance ride to the hospital all of 5 blocks away.  If you think Uber surge pricing is bad, get a bill for a 5 block ambulance ride.  Being in such a state where I could barely open my eyes I will never ever forget the looks on the doctors faces when they came in with the results of the MRI, a brain tumor – BUT good news, we don’t think it has anything to do with the vertigo – YAY two thumbs up!  So now I have two shitty issues to deal with.  Honestly the brain tumor has been a piece of cake, the vertigo has been the persistent pain in the ass.

A couple months later (after a great trip to Bali with some amazing people) I get a chunk of my brain cut out.  Many people will tell you how having a life threatening issue is a greatest thing that ever happened to them.  There is a TED talk where a lady speaks about her tumor as the “best gift I ever survived” (and I understand her point since it is a life changing event) I would have preferred it not deal with this experience.  We were fully prepared for the “friendly tumor” an Oligo – thus the name Oblio.  Two weeks later and the word Glioblastoma caused everyone’s voice to sound like Charlie Brown adult voices.  I will always remember that moment but not what was said.  Yah I have had Chemo, Radiation, more Chemo but through all of that I never felt as sick as I did that weekend after hearing them say my tumor was an Glioblastoma.  The ONLY thing we took comfort in was that everyone said it looked like a text book Oligodendroglioma, our “friendly slow growing yah you can survive this tumor”.  Now it was the, you are going to be dead in a year tumor.

Jessie and I pored over the research and took copious notes and devised a plan to fight this.  Now the part that gets me teary eyed – all the support we received.  That was TRULY the greatest gift of the year.  I appreciate each and every one of you that helped us through my recovery, the tumor walk, being there to chat, visit, cheer us up, take our minds off this horrible shit, and keep us moving.  I knew we had great friends and family but the outpouring of support just stunned me.  I cannot thank all of you enough.

So that is it with the bad stuff.  On with the good:

  • I got engaged to a wonderful lady that continually fills me with joy.
  • We met Dr Jerry who challenges me to keep living my life and provides reassurance when we do down the rabbit hole.
  • I got back on the bike and actually did some mountain biking – thanks to Team Western Safety for that.
  • I raced in 6 cross races. While never a threat to win I got stronger as the season progressed and felt just being there made me the biggest winner on the course.  How many of those ass holes had a chunk of their brain cut out and were undergoing chemo.  Ha!
  • We took several fantastic trips – Bali, Kauai, and visited family in both Boise and Spokane.
  • I came back to work and feel, for the most part, pretty normal.

What I learned:

  • Life is not about stuff, it is about having experiences with great people (but having nice stuff can make the experience better: see mountain biking above (I would have cracked open my head if I did not have my new bike, thank you Jessie))
  • Try and make a difference for others. I think we get so wrapped up in ourselves that we miss out on helping others.  You really see that when you are in a Hospital a lot.
  • If you think you have it bad, there are others that are always worse off than you. I think about that while racing that there is always someone faster than you.  So fight your own fight and don’t let someone else get you down.  Everything is up to you, you are not entitled to anything.
  • This is probably the most important, be in the best shape you can be. I think my recovery has gone so well can be attributed to being relatively fit.  No, you don’t have to be a world class athlete or run marathons but you do have to be active, strength train, and eat right.  ELIMINATE processed foods, cut WAY back on sugar or eliminate as much as possible, and cut the carbs.  Sugar and carbs feed cancer – that is a fact.
  • You need to be an advocate for yourself – Doctors do not have a magic pill. They cannot fix things by waving a magic wand.  They can be overwhelmed by the number of patients they deal with – YOU need to educate yourself and come prepared.  Do not take what they say as gospel, challenge them, make them prove their theory’s, get second opinions.  AND listen (or read) these three podcasts

Yah, I am looking forward to 2016 coming to an end but there has been some bright spots throughout the year.  I have learned so much about myself, my friends, and just my perspective on life.  I hope all of you have a fantastic New Year’s Eve and CHEERS to 2017

Nov 202016
 

…it is when this bird takes his Optune pads off.

The Novocure/Optune results released this week have been very positive and I know it should be helping to keep this old tumor at bay AND it is a great non-invasive way to treat but it does feel like a cage at times.  I have gone just under three weeks with this thing and when I first heard about it I could not figure out why (if you had the pads on) you would not be running it 24/7.  Now I understand how nice it is to have it off.  I really noticed it yesterday when Jessie put it back on after several hours with no pads on.  My cross races and gym time are about the only time I don’t wear the pads and those 2-3 hours are glorious.  After experiencing that feeling I think we will settle into an every two day rotation where we replace my pads at work after I go to the gym.  Being unencumbered is so nice.  My mom has been on Oxygen due to pulmonary fibrosis and I can relate to her situation always being attached to something.  It is so draining to constantly be lugging something around.  Thank god I have the new version that is so much smaller than the previous version.  I hate to complain about something that is working to save my life but it is a transition accept and deal with.

Plus these pads get heavy, the four pads together weigh just over 8 ounces and then have a 2 foot cable pony tail.  It seems like you always have something tugging you down like a ball and chain.  I am less likely to get up and do something because I am attached and have to lug this thing around.  The backpack is helpful but that gets cumbersome and annoying after a while.  The pack is just a little small for me.

Yesterday was so wonderful with probably the longest period of not wearing it.  I just felt that weight and tug once Jess started attaching those pads – my cage, keeping me from flying like I used to.  But better to have some clipped wings than to have no wings at all.  Optune, just keep me alive and I will find my own way to fly.

MRI next week – fingers crossed it is a non-event AND we get to see Dr Jerry after his return from the Society of Neuro Oncologists (SNO) conference.  I am sure he will be all jazzed with new and exciting discoveries that will pump us up as well.  Half the battle is looking forward, staying positive, and having little victory’s.

Here is to next weeks VICTORY!

Nov 032016
 

Well I got my Optune device today.  This is going to be quite the adjustment given my lifestyle.  I have included a few pictures so you can get an idea what I will be carrying around with me 24/7.

It comes with a cute little back pack and my 3 bay battery charger.  If I don’t have it plugged into a wall outlet I have to be on battery.  Looks like they run for about 3-4 hours before I have to swap.

Backpack
If I don’t like the backpack I can wear a nifty little sling show below.

20161102_170112

Then the whole thing is attached to the array pads that adhere to my head – one on each side, one front and one back. shown below.

The marks on my head are from a stretchy bandage thing called Surgilast as an added layer of protection to keep the pads in place.  I removed for the pictures.

20161102_16583520161102_165743

 

The cables run down behind my head into that white box, the box plugs into the “device” that creates the electrical field in my head to hinder cell division.

So that is it, I get to wear this as much as possible.  Change the pads a minimum of every 3-4 days.  Shower, shave head, reapply (and move slightly to give my scalp a break).  The good thing is I can replace the pads as often as I like so if they start to come off after the gym or I want to go ride my bike I can just remove and replace (with new pads) once done with my activity.

Fingers crossed this helps prevent those little bastard cells from dividing and they die off….  Time will tell.

At least my head will be warm this winter.  Time to go hat shopping!

 

Oct 312016
 

That has pretty much been the status quo recently.

bertheadshot

Finished first round of 28 day chemo cycle and both blood tests show I am ready for the second round and my bumped up dosage.  I have not raced since September 28th.  The timing (and my motivation) have not worked out.  BUT we had a great week long vacation in Kauai that more than made up for any missed races.  I would love to get out there and race this weekend but that might be a tall order after a week of higher dose chemo.  I will keep on the bike this week and see if I can get the legs in shape.

The funny thing I noticed; the cold and wet and dark have not really deterred me, it is the clean up after.  It is so much work if the mud is out.  I see the pictures and videos from the races and it just makes me bummed that I did not go race.  I also feel pretty dialed into my body and I know not racing is the right decision right now.  The next three races are brutal hard so getting the motivation and energy up is going to be quite the task – sitting on the trainer and watching football is so much more inviting.  They also moved my race an hour and a half earlier.  That makes it even harder to get up on a weekend, eat, pack up all the crap, and head to some rainy soggy venue.

I did get out for a mountain bike ride once we got back from Kauai.  WOW, that really kicked my ass.  Thanks to Scott and Clay for putting up with my slow ass all day.  I clearly went off the keto diet while on vacation and my body did not react well to being confused once back.  I did not have any energy plus not riding all week really caught up to me.  The next day I had my blood test and found my red counts were pretty low.  Hard to move oxygen around when you don’t have enough hemoglobin to transport.

On the new news front I have been approved for a really cool device called Optune from a company called Novocure.  This device went so well through trials they stopped them early and Optune has become a part of the standard treatment for newly diagnosed Glioblastoma Patients.  Pretty amazing stuff OTHER than I have to shave my head.  Real bummer as it has just started growing back after radiation.  I made the comment to my Radiation Oncologist Dr Jerry that he made me look like Bert of Bert and Ernie fame.  Thus we changed our Halloween costume to take advantage of my remaining hair tuft.  The costumes have been a huge hit.  I still cannot believe I came to work this way.  Halloween is Jessie’s favorite holiday so I will do what it takes to make her happy.

Info on Optune https://www.optune.com/

Details of success related to using Optune with Temozolimide (TMZ) chemo treatments

https://www.optune.com/newly-diagnosed-glioblastoma/benefits-and-risks-for-newly-diagnosed-gbm

So expect pictures of my new headgear Wednesday and my first impressions.  Hard to go from a somewhat normal life back into the fight against cancer.  That is the worst, it is more psychological than physical anymore or seems to be.

Oh and tonight is the grand shave, I am joining the club Peter, Steve, and Jeff – any advice???

bert-ernie