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.
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
“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!
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
… a text from Dr Jerry saying my MRI was clean. We will see him later today but that sure will make the rest of the day much easier to handle. My flippy floppy tummy just went away after that. Whoo Hoo!!
When we started this journey, Tom sought out resources and he came home from the library armed with books. The book that caught my eye in the pile was Defy and Conquer by Mindy Elwell. She was fighting an astrocytoma (grade 3) but had a much harder go of it than Tom has had to date. Her book was the first “resource” we had for the Keto diet and her success with it. Her story and her spirit inspired me and we picked up lots of tips for talking to the doctors. I had taken to following her story along with two others-Adam Blain-author of Pear Shaped (glioblastoma) (hilarious) and Bryan Bishop author of Shrinkage (inoperable brain stem tumor) that hit a chord with us as he was diagnosed shortly after his engagement. Following these people, I share in their victories and try to glean whatever I can that may be useful to us in our own journey. Tom also corresponds with a blogger in New York who is about 6 months ahead of him from when she was diagnosed and is also using Optune and she’s been another great font of strength in all this.I had watched this past month or so as Mindy’s story took a turn for the worse and today learned that she had passed. She stretched her 18 month prognosis into three years with her loved ones.
My heart absolutely aches for her family and friends. (There is info in the obit about how to donate to a trust for her kids). I love that her legacy and story of love, hope and courage will live on and we will keep up our fight to honor her memory now too.
Okay Mindy, we’ll keep fighting. So who else is out there that is beating this? Well I found this lady-a 16 year glioblastoma survivor (!!!) and a semi-local woman at that.
This woman is incredible. Her tumor keeps coming back and she keeps knocking it down each time. I’m really looking forward to reading her full story.
And who knows? Maybe some day someone in our situation will look to Tom’s blog as a beacon of hope during their dark hours. If we’re really lucky, and if I can ever get him to sit still long enough, maybe we’ll even get a book out of him.
Wish us luck for tomorrow. Results late Wednesday.
…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!