I know there are a lot of terrible things happening right now but we do have a bit of good news to share. We had Tom’s scan today and it was stable. The spots are unchanged and one may be a little bit smaller. We also recently heard back on our second opinion from UCSF and they agree that the spots are likely delayed radiation damage to blood vessels and not indicative of tumor. These last two months have been a bit nerve racking until we got this news as contemplating another surgery and round of treatment 4 years later and in the middle of a pandemic was daunting to say the least. Now we really get to enjoy our anniversary getaway in a place that is very special to our hearts with some great wine from @domainedivio
Today is Glioblastoma Awareness Day. We wanted to share some facts with you all (scroll to end if you just want to see Tom’s current status).
Glioblastoma Facts & Figures
Glioblastoma (or GBM) is one of the most complex, deadly, and treatment-resistant cancers.
More than 13,000 Americans are expected to receive a GBM diagnosis in 2020.
GBM accounts for 48 percent of all primary malignant brain tumors.
It is estimated that more than 10,000 individuals in the United States will succumb to glioblastoma every year.
The five-year survival rate for glioblastoma patients is only 6.8 percent, and the average length of survival for glioblastoma patients is estimated to be only 12 to 18 months.
Survival rates and mortality statistics for GBM have been virtually unchanged for decades.
Despite first being identified in the scientific literature in the 1920’s, there have only been four drugs and one device ever approved by the FDA for the treatment of glioblastoma.
None of these treatments have succeeded in significantly extending patient lives beyond a few extra months.
Some patients have a glioblastoma upon diagnosis (de novo or primary GBM), while other patients’ tumors start as another, lower-grade type of brain tumor and over time progress into a glioblastoma (secondary GBM). A vast majority of GBM diagnoses are de novo.
Mean age at diagnosis is 64.
In addition to being life-threatening, GBM – and its harsh treatments – inflict devastation upon the brain, which controls cognition, mood, behavior, and every function of every organ and body part.
Many patients will lose their ability to work, drive, and a host of other functions that contribute to one’s sense of self and independence.
Glioblastoma is also one of the more expensive cancers to treat, often leaving patients and families with major financial hardship on top of the burdens of the disease.
Prominent Americans who’ve been lost to this type of cancer include: Beau Biden (son of former Vice President Joe Biden, and former Attorney General for the state of Delaware); Gary Carter (Hall of Fame Major League Baseball player); U.S. Senator Edward “Ted” Kennedy (Democratic politician); U.S. Senator John McCain (Republican politician and former presidential nominee); and Edward “Tug” McGraw (Major League Baseball player and father of country music star and actor, Tim McGraw).
Here’s the link to today’s presentation if you would like to hear more lf the latest on glioblastoma and hear from other survivors and providers:
And now for the update:
It’s been just over 4 years since Tom’s diagnosis. We recently had Tom’s MRI and two spots have persisted. While they don’t present as typical tumor, one has grown about 1mm from his last scan while the other faded somewhat. We discussed the option of surgery to remove and analyze the spot with his care team but we all came to the conclusion this week that the spot is too small to warrant surgery and again is not indicative of tumor. Hopefully it will go away on its own like the other spots have. We will re-evaluate at the next scan. We are also going to work on getting a second opinion in the event we need a more in-depth consult in the future. Tom feels great, has no symptoms and is still riding his bike as often as possible. As always, thanks for all of your amazing support!
4 years ago today I walked into OHSU to have my Brain Tumor removed. Such a long and short time 4 years can be. It is a VERY long time for those of us with a Glioblastoma but such a short time when you look at our lifetimes. I have seen too many people not make it this far after diagnosis, people I felt were just as capable (or more capable) of beating this cancer thing. Every day I wonder why have I made it this far, how long will it last, can I hit that 5 year mark, what they used to call “remission”? I just think, that is when I can get life insurance again so I can make sure Jessie is well cared for when this damn disease catches up to me.
Hitting milestones puts things in perspective. I can be rather fussy, I want things clean, neat, and tidy (yes, this is rather selective) BUT life is messy, we don’t come with a definitive manual how to live it. A couple things I have learned over this past 4 years, don’t put things on hold and don’t obsess on making it perfect. This year we finally put in a raised bed garden and one of my favorite things to do is walk out with my cup of coffee and check it out each morning. We threw in a ton of flowers and plants this year. Are they all I the “perfect spot”, don’t care anymore because I am going to enjoy them where they are.
4 years ago I was bound and determined to get back on my bike and every spring I wonder how much longer do I have left. Last week I was finally back on the mountain bike and while there was a lot of pain and discomfort grinding up that hill the reward is a blast flying down. Yah we got muddy and sweaty and it is a pain to clean everything but damn it is fun.
Tomorrow it will be 3 years since we adopted Olive and what a whole new world of mess that has become BUT she also provides an endless amount of joy. She is one of the most unique dogs I have ever encountered. Her ENDLESS amount of dog hair drive me crazy and my God can that dog snore!! She is also sweet and loving and has those giant sad (manipulative) eyes. On her adoption anniversary she gets to sleep in our bed (and I get a horrible night of sleep) but it makes her so happy to be in our bed and everyone should have an opportunity to be happy.
In 4 years a lot can happen, some of it good, some of it bad, embrace all of it! Get out there and live it, embrace the mess, the sweat, the joy and relish the fact we are alive. You only get this opportunity once so make the best of it!
Thank you everyone that have loved and supported me over the past 4 years. I am eternally grateful and look forward to relying on all of you for the next 4 (and the 4 after that and so on…)
Huge thanks to all of you who supported Team Food Baby for the virtual brain tumor walk this year. We had team members in Oregon, Washington, Idaho and Hawaii this year! Tom’s sister Mary had some awesome shirts made for the Bird family team members! Even with everything going on the team still raised $2963 this year bringing our five year total to $18,420!!!! We still plan on doing the casserole party fundraiser once we can gather again. The virtual ceremony for the walk should still be up on the Northwest Brain Tumor community fb page until 10 am tomorrow if anyone wants to watch. They used some footage from an interview I gave a few years ago and you get to see our favorite Dr. Jerry on there too! Thank you all for your support!!!
Cheers to a mostly stable scan. The spots we found in November have “resolved” but there is a new spot in the field of radiation. It is most likely also radiation damage but we will continue to monitor closely, currently it is too small to biopsy. Thank you all for your words of encouragement. It really means a lot!
Four years ago, today, I stood up at work to look outside and my world started spinning…
While the physical spinning has stopped the metaphorical spinning has started up again. How come I have made it this far? Why me? That is the constant question anymore, Why ME! Back in November we had a shock, two spots, we kept that sort of quiet until the next scan in January. It appears they are nothing significant BUT it sure does not feel that way. Last year we met a couple that were just starting their brain tumor journey and they were optimistic, positive, expecting a full return to life, fully believing they were going to beat this thing. They were just like Jessie and me. Except they were not. I found out last week he passed away on the 22nd of February, barley over a year after diagnosis.
I knew no one, zero, not even a hint of a person with a brain tumor until a doctor told me in an emergency room that I had one. Now in the course of 4 years I have met or learned about 4 others, three of which have passed away after I was diagnosed!! Heck one guy I had even mountain biked with!!
I cannot speak to everyone in this tumor community but I get the impression we all follow similar patterns where there is this flurry in initial treatment, almost continuous searching for connections and hope, a constant barrage of well wishing and attention from doctors, then if you are lucky enough the calm after the storm and you are largely forgotten and you enjoy that. Then comes the covert stalking of other tumor survivors to “see” how they are doing. Secretly hoping, wishing, praying that they are living the normal, progression free life you so long for as well.
Today on my 4 year anniversary of the discovery, I finally did my follow-up internet stalking and was devastated to find my guiding light, my rock, my compatriot on the East Coast struggling with reoccurrence that happened this summer. She was the FIRST tumor patient I reached out to. She has been so open and generous and ACTUALLY did something to help tumor patients while I just continued to live my life and plod along doing next to nothing with the time I have been given. She has had some of the best care in the world. She was about 4 months ahead of me. I have been vicariously living in her successes and now to read how quickly and aggressively it can come back is terrifying. Jessica Morris, my heart and prayers go out to you!!
So, Wednesday is my next scan. Where in the past they were just standard procedure, heck I have gotten so used to MRI’s I can fall asleep in them. This one will be with a heightened sense of awareness. I cannot get out of my head, when will I stop being a statistical anomaly and become one of the masses.
What is the magic equation to keep me an outlier? I want out of this !@$!& dataset!!
Happy New Year friends! Celebrating a stable scan tonight! Tom actually had his last scan in November. There were two tiny spots that showed up and while his oncologist said he was not concerned, we agreed to come back and scan again in 6 weeks. It ended up being more like 7, but today’s scan showed no change. The oncologist said if it was tumor, he would have expected some growth or change in that time. It is likely just delayed radiation damage but we will continue to monitor. The spot they measured is 2.99 mm. In December Tom also underwent a hernia repair. He had a great outcome but misses being active. 1.5 weeks until his restrictions are lifted, not that we are counting. I’ll post again tomorrow with details on this year’s tumor walk and before long the casserole party. Thanks for all your continued love and support!
Super thankful and relieved for another good MRI for Tom! Thanks to you all for your continued friendship and support in this journey. We are unbelievably lucky to be here today and enjoying our life together.
The very biggest of thank yous to all who donated to Team Food Baby and the 2019 Brain Tumor Walk. Thanks to those who donated directly, showed up to our fundraisers, showed up to the walk and those who rooted us on. Thank you for funding research for finding s cure for Tom and all those who live with brain tumors! Team Food Baby raised $3505 this year (with big thanks to one donor in particular). This year’s walk raised at least $188,000 total and our team total over four walks is now up to $15,457. We couldn’t do this without all of you!!!!
Join us or donate!