Glioblast-O-Cast: Recent Episodes
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Life Beyond Glioblastoma with Meg Turecek *** I'm a glioblastoma (GBM) warrior living each day and getting on with life despite the looming terminal diagnosis of brain cancer.
TRANSCRIPT (links to follow)
This is Episode 025 of Glioblast‑O‑Cast. What can I do to deal with aphasia?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I answer the question, what can I do to deal with aphasia?
And on my shown page you can find some links and a little example of an aphasia technique that helped me. But be forewarned—I make no guarantees on the listability of my singing voice.
Following my recurrent radiation for a likely recurrence, I found myself in a new situation—where I couldn’t really speak. I tried calling my doctor, but I couldn’t say my name, I couldn’t say my birthday, I couldn’t say anything.
The words were in the top of my mind, I just count’s get them out.
It was certainly distressing for me and so thankful my boyfriend just got home from an errand and took immediate action talking to one of my doctor.
They advised we go to the hospital. After a CT scan showed things were okay, the on-call doctors advised I stay in the hospital and I agreed. Little did I know it would be a weeklong hospital stay.
We tried a couple approaches for dexamethasone steroids. I really hate this stuff, but there are times it is necessary. And in was a necessary evil to help end the pain and take control of my situation.
The first couple days were challenging. I couldn’t find the letters I wanted to send my boyfriend a message and went to get one of the nurses to help. My eyesight was still hiding, things from my right eye, and couldn’t see people staring right next to me.
So, what is aphasia?
Simple put, aphasia can be referred to as Acquired Language Disorder.
It was first reported by a Swedish physician, Dr. Olaf von Dalin in 1736. Then in the mid-1880s, aphshia was the subject of clinical studies.
In 1904, American neurologist Charles Mills suggested that playing piano could encourage patiens with week known songs.
Aphasia is mostly known as a situation that affects stroke patients or others with brain damage. It happens to the left hemisphere of the brain and those affected then have trouble speaking or can’t speak at all.
But when trying the Melodic Intonation Therapy-MIT-developed in 1972 which is using singing to communicate instead of normal speaking, the stroke victims were able to communicate in some ways.
And I found that this approach to my aphasia situation was helped by singing to speak.
The left hemisphere normally processes language.
The right hemisphere normally processes music.
So when my left side was not processing language after my radiation, I did some little tests in the hospital and tried to sing-alone, of course-I found I could connect with my thoughts and get out my thoughts.
When left language has been damaged, music encourages neuroplasticity. The brain starts to process language on the right.
So, as a warning. I will give a little example of what I did alone in the hospital when I couldn’t quite get to my words.
I make no claim of sound quality.
Sing what you say.
So, that my attempt. On my show page, some lists about aphasia.
Thanks for listening. This has been Glioblast-O-Cast Episode 26.
Theme music for Episode 026: “Acoustibreeke” Benfound.com
Aphasia links
https://www.aphasia.org/aphasia-definitions/
https://www.flintrehab.com/2017/stroke-affecting-speech-aphasia/
https://www.npr.org/sections/health-shots/2011/12/26/144152193/singing-therapy-helps-stroke-patients-speak-again
http://www.ndimedia.com/sing-to-say/
https://www.thoughtco.com/sing-like-you-speak-2994190
https://www.spectator.co.uk/2016/10/sing-something-simple-the-therapy-that-helps-stroke-victims-to-speak/
https://aata-uk.org/singing-therapy/
TRANSCRIPT (links to follow)
This is Episode 025 of Glioblast‑O‑Cast. What do I do about radiation hair loss?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I answer the question, What do I do about radiation hair loss? And, as usual, some links can be found on my show page with this episode.
When I found myself facing another course of radiation to attack what we think is a recurrence, I knew I was facing additional hair loss.
I know for some, they find strength in facing the hair loss by shaving their heads. Others have continual head shaving due to the Optune device that is used for treatment. I’ll have a link about that on my show page.
I have seen others who may lose their hair due to chemotherapy, and hold parties with friends for moral support as they pre-emptively shave their hair off before it falls off. It’s one of the few things we can control in a situation where we don’t have much control. The cancer will do what it will do, and we have the option of seeking treatment or not. All personal choices. Like cutting off hair or fully shaving the head.
So when I approached the new series of radiation treatments--a total of 23 sessions Monday through Friday—I wanted to be more in control of an uncontrollable situation. I had radiation two years prior for the standard of care so I knew some of what to expect with radiation.
The first time, my radiologist cautioned me to not shave my head as it was possible that there might not be so much gone. I only lost hair in small triangles, one for the entry of the radiation and one for the exit. It was hardly noticeable.
But, the weeks of gradual hair loss, a pinch here and there, left the shower a challenge to keep from clogging. So this recurrence, I wanted to be pro-active. And I thought about chopping my hair.
Cutting off my hair to be more manageable was a concern. But, for me, it was also a concern that I wouldn’t look like myself without my hair. I don’t feel like a vain person, I just see it as a part of my identity, who I am. And I am a woman with long hair.
I was considering a wig to get me through this phase of treatment so I would look mostly like myself. I remembered my Mom during her treatment for ovarian cancer and the not-quite-right wig that she had. I didn’t want a fake wig that looked like a wig or a hairstyle that wasn’t me. And that’s when I found some ways to make a wig from my own hair.
I also had some advice from friends currently battling glioblastoma. One had gotten a full wig and told me she only wore it twice, because it just was too hot. So, that was a bit discouraging. And that’s when I found some companies and organizations that can make a halo wig from my own hair. A halo wig has the top—the halo—with a breathable fabric to keep the heat under control. I would wear a hat over it and have my own hair to fill out my look.
That seemed like the perfect solution to my style dilemma.
But before we chopped it all into tiny ponytails, my boyfriend suggested that we get a full picture from the planned radiation to know exactly where the hair loss could be expected.
At first, my doctors noted that the radiation would be in a bigger area to fight the inoperable blob. But once we looked at the planned array, we could see that it was only going to effect the left side of my head about an inch over and behind my ear.
The radiation was not aimed at my whole head, which meant that all the hair on the top of my head and the whole right side plus most of the back would likely be completely safe from falling off. So there was no need for me to cut off all of it off or get a wig.
So my advice is to ask for details with treatment plans. I can only be prepared with knowledge, even when learning the agenda is not exactly fun. I am able to tap into my positivity when I can move forward with as much pro-active plans as possible.
I’ll have pictures on my show page of the planned radiation array and with where we cut the tiny ponytails. I am keeping the parts we cut off in case I find myself in another radiation situation in the far future. And you’ll find some links for wig options as well as a unique wig exchange organization where you can find a wig to get you through and then donate a wig when you don’t need it anymore.
Thanks for listening. This has been Glioblast-O-Cast Episode 25.
Theme music for Episode 025: “Digital Lemonade” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
Wig resources.
Chemo Diva: Get a Halo Wig Made Out of Your Own Hair! http://chemodiva.com/
Verma Foundation: Inspiring hope. Improving lives. https://vermafoundation.org/projects/put-a-cap-on-cancer/
Macmillan Cancer Support: https://www.macmillan.org.uk/information-and-support/coping/changes-to-appearance-and-body-image/dealing-with-hair-loss/wigs-and-hair-pieces.html
Lolly’s Locks: a nonprofit organization that provides high-quality wigs to cancer patients in need https://lollyslocks.org/
EBeauty Community: Wig Exchange Program https://www.ebeauty.com/wig-exchange-program/
Friends are by Your Side: is a consortium of Beauty Industry Leaders, Salon Owners and Stylists committed to donating much needed hair replacement and styling services to women undergoing treatment for cancer. http://friendsarebyyourside.com/index.html
Cancer Council Queensland: ESA Wig and Turban Service https://cancerqld.org.au/get-support/cancer-support-services/wig-and-turban-service/
Other Links:
Optune device: https://www.optune.com/
TRANSCRIPT (links to follow)
This is Episode 024 of Glioblast‑O‑Cast. What would I do differently if I could start treatment over?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I answer the question, What would I do differently if I could start treatment over? And, as usual, some links can be found on my show page wit this episode.
Nearing my two year craniotomy anniversary, I find myself reflecting on my journey so far. And tat brings up the question of did I do things best for me or could I have done them differently?
One thing is for sure, I would still do surgery and the standard chemo and radiation.
As scary as the idea of surgery was, being told by one of the anesthesiologists that I would probably die during surgery due to the seated position I was in so my neurosurgeon could have the best approach, I would still opt to start with surgery.
As my7 tumor was only 9 millimeters, a biopsy to diagnose would have been more traumatic as they would have cut through good brain to take a small sample to test. The risk for that seemed too great. If it turned out to be what it was—glioblastoma—I would have needed a second procedure to remove it all.
At the time, I had wanted to get a second opinion before proceeding. But my surgeon made a lot of sense and I just wanted it out. ASAP.
Chemo and radiation would still be on my protocol list, despite knowing my extreme low platelet reaction to chemo.
For that, I would be more diligent in seeking natural remedies for the low platelets such as using vitamin B12, checking iron levels, adding folate by boosting diet with peanuts, orange juice, kidney beans. I would try supplements such as papaya leaf extract, melatonin, chlorophyll.
I would have searched harder to work with a naturopathic oncologist.
Instead of just doing standard treatment and waiting to see if that worked, I would have started on the naturopathic supplements much earlier. And that includes cannabis oil.
Now I know supplements are not for everyone. I certainly was resistant as I have a long history of being terrible at remembering to take any pills. And I really wanted to give the standard treatment a chance to work.
But knowing what I know now from my two years of living this journey, I would have really done my supplements sooner. I find they help me.
But so does daily exercise. I would have been more diligent in doing the easiest stretching and moving routines daily—even when I was worn out from the chemo and radiation. I remember trying but I was so very worn out from treatment that the sofa became my new best friend.
It seems typical for us humans to second guess decisions we make, but we need to know that those decisions are the best in the moment with the available information.
So my big advice is to make the effort to get a second opinion, to seek reliable information, and breathe before jumping into a treatment plan.
Ask every conceivable question. Don’t be afraid to ask the surgeon and oncologist anything.
It’s been a huge help to share stories and protocols with other glioblastoma warriors. And it’s very easy to do that these days completely online—no need to schedule a weekly support group if there aren’t enough potential members local to you. You can share questions and tips globally, internationally and maybe find a way to tackle the glioblastoma situation the best way for you.
As finding support from fellow glioblastoma warriors has been such a help for me, and I wish I had ventured into that earlier in my journey, I have a list of support organizations as well as the many groups on Facebook.
Thanks for listening. This has been Glioblast-O-Cast Episode 24.
Theme music for Episode 024: “Quirky Dog” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
Facebook Groups: Most are closed groups and may ask qualifying questions to join.
The Brain Tumour Charity: https://www.facebook.com/groups/114009085471466/
Brain Tumor Talk: https://www.facebook.com/groups/221698948725/
Brain Tumours With Humour - Support Group: https://www.facebook.com/groups/464851293720408/
Beating Brain Cancer: https://www.facebook.com/groups/1706278459631561/
Glioblastoma Support Group: https://www.facebook.com/groups/gbm4cure/
GBM Surviving and Winning...../ Support Group: https://www.facebook.com/groups/GBMgrade4survivors/
Glioblastoma Brain Tumor GBM4 and Cannabis Oil: https://www.facebook.com/groups/glioNOmore/
Glioblastoma Warriors and Brain Tumors Fighters: https://www.facebook.com/groups/931060136966040/
Glioblastoma Brain Tumor GBM4 and Cannabis Oil: https://www.facebook.com/groups/glioNOmore/
GBM Brain Tumors: https://www.facebook.com/groups/gbmdx/
Glioblastoma Awareness and Information: https://www.facebook.com/groups/1884618351565011/
Glioblastoma Traveller's Network: https://www.facebook.com/groups/142724062951560/
Other Support Organizations:
Brain Tumour Alliance Australia: The only national Australian organization for the brain tumour patient, family and caregiver.
a good list of groups
www.btaa.org.au/page/26/support-organisations
Cancer Support Community: So that No One Faces Cancer Alone
www.cancersupportcommunity.org
Chris Elliott Fund End Brain Cancer: Fueling Research & Clinical Enrollment
https://endbraincancer.org/we-can-help/
Imerman Angels: Your One-on-One Cancer Support Community
https://imermanangels.org
Greg's Mission: Providing one-on-one brain tumor support
http://gregsmission.org
TRANSCRIPT
This is Episode 023 of Glioblast‑O‑Cast. Do I have a brain tumor bucket list?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I answer the question, Do I have a brain tumor bucket list? Be sure to check my show page for some links.
Being hit by a terminal diagnosis with the super lousy prognosis for somewhere around 14.6 months average survival—thanks to the American Brain Tumor Association for that statistic—well, it’s not always easy to not panic and think about all my life dreams, my goals, my wishes for adventures and experiences with the people that matter to me.
No, in Episode 015, Do I have plans for my journey to the great beyond?, I talked about getting my affairs in order. That’s all good, but this episode is about pusuing life when facing the end.
I started thinking about all my professional goals—which have been definitely halted as I just can’t work as a graphic designer.
And my other goals—my youthful dreams of writing for movies and television—well, I know that business is ever complex and finding success is hard without a glioblastoma diagnosis.
So I’ve had to adjust my dreams to my new situation.
This podcast is a big part of my new future. It’s helped me prime myself for my step into my dream pursuits. To move my focus and attention to my other dreams, I will be adjusting Glioblast-O-Cast to a monthly schedule rather than a weekly. All my episodes will still be available anytime.
One of my dreams is to finish and self-publish my novella.
Another dream will be publishing a collection of my short stories.
A third dream will continue with my LibriVox volunteering of reading/voicing public domain books into audio books that are free to listen to.
Along that line, I’m looking at reworking a pilot TV script I wrote and converting it to a radio play. I actually have several projects that can work for that dream.
Now, not all my dreams are writing related. Like most people, my bucket list also includes some travel get-aways.
Where would I like to go?
There’s more to see and experience in Spain. And Portugal.
Australia and New Zealand have always been on the travel list.
I would love to add Florida, New York city, Louisiana, Alaska, and more time in Hawaii.
Other locations include Patagonia, Costa Rica and Jamaica.
I know that most of this probably won’t happen. But that’s not the point. The point is to keep dreaming and doing. And me announcing my little dreams to the world set me up for accountability. If I’ve told you, then I need to work to follow-up on my plans.
Some dreams, like my writing, don’t cost anything. Just my time and effort. And being on disability retirement leaves me with much time on a day to day basis to go at my own pace.
But my travel dreams, they need a lot of planning and budgeting.
Of course, there is always the crowdfunding option to help make a dream happen. We did that to have my sister visit when things weren’t looking so good. See my Episode 008, Did I try crowdfunding?
I can say that crowdfunding doe take a lot of effort to manage.
For others, there are organizations like the Make A Wish Foundation which is for terminally ill children to experience a great life dream.
There are similar organizations for adults with terminal illnesses. I have a list on my show page that can help glioblastoma warriors have that wish.
Please check out my show page for links to organizations that fulfill wishes for terminal adults.
Thanks for listening. This has been Glioblast-O-Cast Episode 23.
Theme music for Episode 023: “Sunflower Dance Party” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
Organizations for life wishes and dreams for adults (in alpha order):
Clare’s Wish Foundation (Ireland): http://clareswishfoundation.com/
Crossing the Finish Line: http://www.crossingthefinishline.org/
Dream Catchers USA: http://www.dreamcatchersusa.org/
Dream Foundation: http://www.dreamfoundation.org/
Epic Experience Beyond Cancer: https://www.epicexpereience.org
Eternal Wish Foundation: http://www.eternalwish.org/
Fill Your Bucket List Foundation: http://www.fillyourbucketlistfoundation.org/
Reeling & Healing Midwest: http://fishon.org/
Second Wind Dream: https://www.secondwind.org/
Stella’s Wish Foundation: http://www.stellaswish.org/
Twilight Wish: http://www.twilightwish.org/
Willow Special Days for Seriously Ill Young Adults: https://www.willowfoundation.org.uk/Hom
TRANSCRIPT
This is Episode 022 of Glioblast‑O‑Cast. What about working after brain tumor surgery
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I answer the question, What about working after brain tumor surgery? On my show page are some links for financial concerns.
Just prior to my seizure that started me on the GBM journey, I remember my attention to detail as a freelance graphic designer was really slipping. I was making careless mistakes and my concentration was flighty.
And after surgery and during chemo and radiation, well, I was just not fit to perform at my best. To continue working after brain surgery just wasn’t in the cards.
I found this especially hard as a freelancer, wearing many work hats on each project. I didn’t have any accrued sick time.
But my focus was not what anyone would accept from a contract worker. Trying to concentrate on work just added to my brain frustrations, increased forgetfulness, and stress.
As hard as the decision was to end my freelance work, I really didn’t have another option. My focus needed to be re-routed towards recovery and finding new treatments for a very difficult to treat situation.
I know some glioblastoma warriors have no options to stop working, but for me, I’m convinced that stopping stress associated with work has helped in my recovery.
I am able to take the moments when I’m able to focus and channel that brain power towards my long side-tracked dreams of writing.
It’s a very different situation to focus on basically hobbies as opposed to the responsibilities and energy needed for work as at a professional level.
Thankfully, in the USA, Social Security Disability applies to glioblastoma. And is technically fast-tracked for approval due to the terminal status. And that Social Security Disability has really helped.
I know for some, that’s either not possible or just not enough for living expenses and the big medical costs of brain tumor treatment. Some have to try to work. And I have seen some with helpful and understanding employers.
But if none of this is possible, there are some charities that can assist with certain costs.
Please check out my show page for financial assistance links.
You can always check out my Episode 008: Did I try crowdfunding? Because for some of us GBM warriors we need a village to care and help.
Thanks for listening. This has been Glioblast-O-Cast Episode 22.
Theme music for Episode 022: “Mariachi Snooze” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
USA Social Security links: www.ssa.gov www.ssa.gov/compassionateallowances/
Several long lists of help organizations: www.cancer.net/navigating-cancer-care/financial-considerations/financial-resources
www.cancerhorizons.com/financial-help/cancer-patients/
www.cancerandcareers.org/en/at-work/legal-and-financial/financial-assistance-for-those-in-need
www.Jeanninewalston.com/integrative-cancer-care/cancer-support-center-integrative-cancer-resources/cancer-financial-assistance/
Episode 008: Did I try crowdfunding? www.glioblast-o-cast.libsyn.com/episode-008-did-i-try-crowdfunding
TRANSCRIPT
This is Episode 021 of Glioblast‑O‑Cast. How do I respond to insensitive comments and questions about my brain tumor
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I will answer the question How do I respond to insensitive comments and questions about my brain tumor?
I’ve talked before about disappearing friends and family—people you expect to be close and supportive but vanish from contact, seemingly afraid the glioblastoma diagnosis might be contagious. Check Episode 11 for more on that.
But how do I deal with people who make insensitive comments? The kinds of things that come from, well, ignorance.
Glioblastoma is not so widely understood by the general public. So when people see me walking around town, going grocery shopping, it’s a bit of a disconnect. They see me as a normally functioning person but they know I had a brain tumor and it’s not what they expect.
Some days are good, but the next day can find me parked on the sofa, napping all day.
But this journey is confusing to other who don’t know all the specifics. And there’s a lot of curiosity. Humans are just naturally curious.
So some people will ask questions or make comments that may seem rude. Or you may be asked the same basic questions or field repetitive comments over and over.
That’s why it’s a good idea to have some prepared answers and updates. A few sentences that can get past the enquiring minds and move on with your day.
Here’s some ideas for responses.
They say: You don’t look sick.
If you’re feeling snarky, a recent response I’ve seen for that is: You don’t look stupid.
Which will certainly get a reaction. But I lean more towards kindness and humor. I might respond: Thanks for noticing! Some days I think they may have cut out my fashion sense with the tumor.
Personally, I like to give people the benefit of the doubt. But I also like to be blunt and truthful and funny. Because this is a serious subject but I don’t need a pity party or to hand out tissues when I explain my status.
Another tired comment: It could be worse.
While that one is true, it’s not helpful and just begs for an insult like: Yes. It could be worse. Instead of this stylish new close-cropped haircut I could have your comb-over.
Of course that only applies if they have a comb-over, but you get the idea.
Instead, I might reply: Yes. It could be worse, but it’s still a brain tumor and I’m doing my best.
And these: Did they get it all? Are you cured?
I don’t have anything snappy for that. It begs for clarification and a little education. So I might reply: My neurosurgeon did his best and got all that was visible. But this kind of tumor is basically star shaped. It has fingers and they can’t see every microscopic cell. So it is likely to regrow. And there’s currently no cure. It’s terminal.
Essentially what I’m saying is it can help you to have some prepared answers that are short and specific as needed.
Remember, general people ask because they care. They may not be abel to choose the right words for you, but you can take your own personality and answer accordingly.
Thanks for listening. This has been Glioblast-O-Cast Episode 21.
Theme music for Episode 020: “Jazzy Frenchy” Bensound.com
TRANSCRIPT
This is Episode 020 of Glioblast‑O‑Cast.
What is my biggest brain tumor fear?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode, I will answer the question, What is my biggest brain tumor fear? And in my show notes, a kind of roll call remembering 2017.
Getting a terminal cancer diagnosis can stir up many fears. Leading up to my surgery, I was feeling the fear of the unknown. Would I still be me? I was afraid I might be paralyzed. I was afraid I would lose my memory. I was afraid I wouldn’t be me anymore. I was afraid I might die.
But I had an excellent medical team that found me recovering and still mostly the same.
Then, with the diagnosis, I had new fears. I was afraid again of dying. Afraid I would never see my family again that live on the other side of the world. But my sister came to visit and other family can video chat.
And once treatment was over—with no options for continuing to medically fight the possibility of recurrence. Again, the fear of death came to bother me.
Being worn out from treatment left me a bit concerned, not exactly fearful, but concerned that I wouldn’t be me.
As I continue to live and find meaning in my actions and plans for my creative projects, the initial fears have no real power over me. I won’t let them.
But the one fear that remains, that still makes its presence known, the fear that hovers over me and motivates me is the fear of being forgotten when I leave this life. Will anyone remember me?
I don’t know why that is a primary motivating factor now, but it’s one of the reasons I do this podcast. It’s why I am focusing on my writing. It’s why I make the effort to keep in touch with old and new friends.
So, with that in mind, on the last day of 2017, I want to take a moment to remember some fallen brain tumor warriors that the world lost this year.
Now, I know that my list is not anywhere near complete. It’s a list of public figures and famous faces who battled brain cancer and passed away in 2017.
I hope you take a moment to remember. On my show page are links to Wikipedia for these fallen warriors.
Thanks for listening. This has been Glioblast-O-Cast Episode 20.
Theme music for Episode 020: “Christmas” Alan Berlin
Brain Tumor Warriors Lost in 2017:
Sam Taylor (President & CEO Oriental Trading Company), age 56, died 29 December 2017 http://corp.orientaltrading.com/leadership/
Heather Menzies Urich (actress), age 68, died 24 December 2017 https://en.wikipedia.org/wiki/Heather_Menzies#Personal_life_and_death
Renan Martins Pereira (Brazillian footballer defensive midfielder), age 20, died 21 December 2017 https://en.wikipedia.org/wiki/Renan_Martins_Pereira
Maureen Prinsloo (Canadian politician), age 79, died 2 December 2017 https://en.wikipedia.org/wiki/Maureen_Prinsloo
Dmitri Hvorostovsky (Russian operatic baritone), age 55, died 22 November 2017 https://en.wikipedia.org/wiki/Dmitri_Hvorostovsky#Death
Jimmy Steele (British dentist), age 55, died 16 November 2017 https://en.wikipedia.org/wiki/Jimmy_Steele_(dentist)
Mikhail Nikolayevich Zadornov (Russian stand-up comedian), age 69, died 10 November 2017 https://en.wikipedia.org/wiki/Mikhail_Nikolayevich_Zadornov#Death
Gord Downie (singer for The Tragically Hip), age 53, died 17 October 2017 https://en.wikipedia.org/wiki/Gord_Downie#Death_and_reactions
Bob Holland (New South Wales cricketer), age 70, died 17 September 2017 https://en.wikipedia.org/wiki/Bob_Holland#Personal_life
Bucky Scribner (NFL punter), age 57, died 16 September 2017 https://en.wikipedia.org/wiki/Bucky_Scribner
Alan Root (British documentary filmmaker), age 80, died 26 August 2017 https://en.wikipedia.org/wiki/Alan_Root
Darren Daulton (MLB Catcher), age 55, died 6 August 2017 https://en.wikipedia.org/wiki/Darren_Daulton
Laurie Brokenshire (CBE Royal Naval officer), age 64, died 4 August 2017 https://en.wikipedia.org/wiki/Laurie_Brokenshire#Illness_and_death
Harvey Atkin (actor), age 74, died 17 July 2017 https://en.wikipedia.org/wiki/Harvey_Atkin
John Blackwell (drummer for Prince), age 43, died 4 July 2017 https://en.wikipedia.org/wiki/John_Blackwell_(musician)#Death
Anthony Young (MLB pitcher), age 51, died 27 June 2017 https://en.wikipedia.org/wiki/Anthony_Young_(baseball)
Jack Ong (actor), age 76, died 13 June 2017 https://en.wikipedia.org/wiki/Jack_Ong#Death
Diane Torr (Canadian performance artist), age 68, died 31 May 2017 https://en.wikipedia.org/wiki/Diane_Torr
Wendell Burton (American tv executive), age 69, died 30 May 2017 https://en.wikipedia.org/wiki/Wendell_Burton#Personal_life
Grace McCarthy (Canadian politician), age 89, died 24 May 2017 https://en.wikipedia.org/wiki/Grace_McCarthy#Death
Jan Faiks (Senator from Alaska), age 71, died 10 April 2017 https://en.wikipedia.org/wiki/Jan_Faiks
Ken Donnelly (Massachusetts state senator), age 66, died 2 April 2017 https://en.wikipedia.org/wiki/Ken_Donnelly
John Derrick (Welsh cricketer), age 54, died 22 March 2017 https://en.wikipedia.org/wiki/John_Derrick_(cricketer)
Richard H. Solomon (US Assistant Secretary of State for East Asian and Pacific Affairs), age 79, died 13 March 2017 https://en.wikipedia.org/wiki/Richard_H._Solomon
Howard Schmidt (Cyber-Security Coordinator Obama Administration), age 67, died 2 March 2017 https://en.wikipedia.org/wiki/Howard_Schmidt
Peter Skellern (English singer/songwriter), age 69, died 17 February 2017 https://en.wikipedia.org/wiki/Peter_Skellern
Rafael Kadyrov (Russian ice hockey referee), age 47, died 19 January 2017 https://en.wikipedia.org/wiki/Rafael_Kadyrov
Richard Machowicz (Navy SEAL and tv host), age 51, died 2 January 2017 https://en.wikipedia.org/wiki/Richard_Machowicz
TRANSCRIPT
This is Episode 019 of Glioblast‑O‑Cast. How do I stop thinking about my brain tumor?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode, I will answer the question, How do I stop thinking about my brain tumor? Be sure to check out my YouTube channel for my special list.
Since my diagnosis of glioblastoma, there hasn’t been a day where I have not thought about brain tumors. I spend a lot of time searching for information that may help my treatment. I think it’s understandable to seek anything that might help prolong the prognosis.
Full time focus on brain tumors can be depressing and not the best use of time in the moment. But it’s not always easy to refocus my thinking when the surgical scar on the back of my head reminds me every day that I’m battling brain cancer by itching or feeling tender.
So how do I distract my thinking to other topics? I find things to do that I enjoy. I make some time for exercise and chores around the house.
Reading is great when my focus is at its best. But when I only read a chapter and start to become distracted, then reading just doesn’t work.
I might watch a movie—new or an old favorite. Or binge on a TV season. And that’s all good. But it’s still a passive activity. It’s good to get some movement and exercise throughout the day. Not marathon training, just easy exercise to move and stretch.
What’s really fun and easy is to play some favorite songs that make me want to dance, to move a bit, even if it’s tapping my feet while seated. Though I do like a bit of aerobic movement with my playlist.
And that’s what I’d like ot share with you. I have a YouTube playlist all ready with 125 songs and counting. Check my show notes.
Dancing around the living room and reconnecting with fun songs from growing up really helps to forget about the brain tumor, even for a few minutes.
My playlist is ever evolving. It’s a mix of disco, rock, dance tunes--anything that has a good beat and fun sing-along. And it really works to change my focus.
Just preparing my YouTube list had me so focused on the task and distracted from my diagnosis for several hours.
My playlist will certainly be expanding. But 125 songs is a good start. Hope you have a listen and cut a rug!
Thanks for listening. This has been Glioblast-O-Cast Episode 19.
Theme music for Episode 019: “Jazz Band” Alan Berlin
Glioblast-O-Cast Positivity Playlist
https://www.youtube.com/playlist?list=PLLA_3Ad4YqHwGtj2JZdIs8AwbmcstE7W1
TRANSCRIPT
This is Episode 018 of Glioblast‑O‑Cast. What do I think about characters with brain tumors in movies and television series?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode, I will answer the question, What do I think about characters with brain tumors in movies and television series? In my show notes you’ll find a list of movies and tv shows that feature a character with a brain tumor.
An important aspect of any cancer is awareness of the disease by the general public. I’ve talked before about my effort to help awareness through this podcast. Because awareness is crucial to funding for research into a cure.
A cure for glioblastoma would be amazing. But right now, that seems like a long way off. So more research funds are needed. And awareness, in my opinion, is key to finding a breakthrough.
While news reports of famous politicians, actors, musicians and sports stars can spike awareness, more needs to be done. That said, it’s important when depicting character in movies and television as having a brain tumor that it is done authentically and in a way that helps the cause.
Ideally, it would be nice if these productions donated a percentage of revenue to research and treatment. I’m not holding my breath on that, but it would be a step in a positive way. I think the least they could do is to share links to brain tumor organizations during end credits.
I’m guessing that most entertainment productions consult with expert medical professionals for accurate details in their portrayal. But I think a panel of real patients and caregivers would enhance the authenticity of their production.
I’m all for realistic representation of the glioblastoma experience. But not all movies or tv shows depict brain tumors in a mindful way.
Recently, a British tv show had a character fake having a brain tumor. And I know there was a real-life person who started a crowdfunding campaign claiming to have a brain tumor.
The effects of brain surgery and brain tumors are not always evident just by looking at a brain tumor warrior.
I know the fake crowdfund appeal and the fake storyline on a popular tv drama have both upset many of my fellow glioblastoma warriors because that perception of faking can trickle down and cause hurt for some patients and perpetuate false, inaccurate information.
Some people may say that any publicity helps awareness. But I think characters faking is more harmful in the long run. Unless, of course, if they preface the film or episode with a disclaimer and information on brain tumor organizations for proper awareness.
In my show notes you’ll find a list of movies and tv shows that featured a character with a brain tumor. And, as a added bonus, some movies and tv with characters dealing with other cancers. I have not seen everything on the list, so I can’t vouch for it all. But if you’re in a mood to watch, check out the list.
And maybe somewhere in the future my glioblastoma story will be on the silver screen. What do you think?
Thanks for listening. This is Glioblast‑O‑Cast Episode 18.
Theme music for Episode 018: “Bossa Nova” Alan Berlin.
Movies with a character with a brain tumor
Turkish Delight (1973)
Death Be Not Proud (1975)
Seizure: The Story of Kathy Morris (1980)
Phenomenon (1996)
The Miracle of the Cards (2001)
Walk Away and I Stumble (2005)
Last Holliday (2006)
Falling Overnight (2011)
Hoovey (2015)
Meet My Valentine (2015)
The Hollars (2016)
US TV shows with a character with brain tumor or cancer
The Big C
Bones: Season 5
Breaking Bad
Buffy the Vampire Slayer: Season 5
Dynasty: Season 9
Elementary: Season 5
ER: Season 8
Eli Stone: Season 1
Grey’s Anatomy: Season 14
House
The Librarians
Ray Donovan: Season 5
UK TV shows with a character with brain tumor or cancer
Coronation Street: character Rita
East Enders: character Steven lies about tumor
Emmerdale: character Brenda
Redwater: character Alfie Moon
Wire in the Blood: series 3
Movies with other cancers
Miss You Already (2015)
Me and Earl and the Dying Girl (2015)
The Fault in Our Stars (2014)
Now Is Good (2012)
Love Is All You Need (2012)
50/50 (2011)
The Heart of Christmas (2011)
Restless (2011)
Endings (2010)
Ways to Live Forever (2010)
Love and Other Drugs (2010)
Hopeful Notes (2010)
Johnny (2010)
Letters to God (2010)
Oscar and the Lady in Pink (2009)
Bright Star (2009)
My Sister’s Keeper (2009)
Keith (2008)
PS I Love You (2007)
The Bucket List (2007)
The Fountain (2006)
My Life Without Me (2003)
Ice Bound (2003)
A Time for Dancing (2002)
Julie Walking Home (2002)
Two Against Time (2002)
A Walk to Remember (2002)
Brian’s Song (1971 & 2001)
Life as a House (2001)
Sweet November (2001)
The Medicine Show (2001)
Wit (2001)
Here on Earth (2000)
Stepmom (1998)
Marvin’s Room (1996)
My Life (1993)
Breaking the Rules (1992)
Dying Young (1991)
Who Will Love My Children (1983)
Terms of Endearment (1983)
Six Weeks (1982)
Love Story (1970)
TRANSCRIPT
This is Episode 017 of Glioblast‑O‑Cast. What do I do for glioblastoma awareness?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode, I will answer the question, What do I do for glioblastoma awareness? You can check my show notes for some helpful links for supporting awareness.
While a brain tumor diagnosis is first and foremost a private medical issue, and regardless of their publicity status, no one is obligated to share their diagnosis, share their prognosis, or share their health status with the public. But keeping quiet doesn't help promote understanding or much needed fundraising for finding a cure.
So what am I doing for awareness? As I don't have the bank account to fund research, my way of promoting awareness is to be open and share about my diagnosis, the details, and how it impacts my life and the lives of those close to me.
Early on with my glioblastoma diagnosis, I wanted to share my experience, my protocols and all the information I researched. I knew that after finding out what limited treatment was available that I needed to do something to help others in my situation. And preparing each and every podcast helps me with my approach while, hopefully, helping others on this journey find information that is useful to them.
I hope by sharing what I have learned it can help others by giving them a jump start to reliable sources. Others support awareness with clever t‑shirts and caps or by supporting various research fundraisers like 5K walks. If there were 5K walks in my area, I would certainly participate. But as there aren't, I can support others that are doing that.
Many people show their awareness with ribbons. We all know the pink ribbon is for breast cancer. And red ribbons usually means AIDS and HIV awareness, but those red ribbons are also used for 34 other worthy causes. So some ribbon colors don't always have the instantly identifiable awareness that you hope they do.
For all brain tumors, the ribbon color is a clever grey for the grey matter, the brain. But grey is also for allergies, asthma, and borderline personality disorder. I find that if I have to explain a ribbon, then it's not making an impact. So, for me, the ribbon use is not the best tool for awareness.
I think a well‑designed logo or image with easy‑to‑read text is a better visual for impactful awareness. At least that's my opinion. I also don't get too strictly involved with brain tumor awareness month, which happens to be in May. I believe awareness and fundraisers like 5K walks should be throughout the year and not arbitrarily relegated to whatever month.
With such a short average survival rate for glioblastoma, waiting for the assigned month seems like many missed opportunities to me. I am very happy to be alive for the brain cancer month and support those efforts, but I see no reason to limit any awareness events to only in May. I'm surviving and battling this year-round, not just in one month.
Last year I got into an online discussion in a brain tumor support group where one of the members was very adamant that, since September is childhood cancer month, we should only post and support childhood cancer in September. That we should wait to seek support for glioblastoma until September was over. Now, I fully support the awareness efforts for childhood cancer in September, but I am not going to stop promoting awareness for glioblastoma in any month because of some arbitrary designation, especially when I'm facing a possible recurrence. Time is precious.
There are many cancer causes, and they all need research for a cure every day. So I say pick your cause, find a ribbon, wear a shirt. But, most of all, share your story and encourage donation and funds for research as well as helping warriors now. Finding a cure is unpredictable, but there are many who need help now.
In my show notes are some links for support organizations.
Thanks for listening. This is Glioblast‑O‑Cast Episode 17.
Theme music for Episode 017: “Little Idea” Bensound.com
AWARENESS LINKS
Awareness Ribbons https://www.disabled-world.com/disability/awareness/ribbons.php
American Brain Tumor Association, BT5k Run and Walk http://hope.abta.org/site/PageServer?pagename=bt5k_splash
National Brain Tumor Society, Brain Tumor Awareness Month #BTAM http://braintumor.org/our-events/btam-bteam-in-2017/
American Cancer Society Cancer, Awareness Calendar https://www.cancer.org/about-us/who-we-are/cancer-awareness-calendar.html
International Brain Tumor Alliance, awareness raising activities http://theibta.org/awareness-raising/
Accelerate Brain Cancer Care, Go Gray in May http://abc2.org/join-us/events/go-gray-may
Brain Tumor Research, Wear a Hat Day https://www.braintumourresearch.org/fundraise/wear-a-hat-day
The Brain Tumor Charity, #WearItOut 2018 https://www.thebraintumourcharity.org/get-involved/wearitout/
Brain Tumor Association of Canada, Brain Tumor Awareness Month https://www.braintumour.ca/3087/awareness-month
Brain Tumor Alliance Australia, International Brain Tumor Awareness Week https://www.btaa.org.au/events/17/international-brain-tumour-awareness-week-
Cure Brain Cancer Foundation, events including walk/runs https://www.curebraincancer.org.au/events https://www.walk4braincancer.com.au/
TRANSCRIPT
This is Episode 016 of Glioblast-O-Cast. How do I keep my energy up and manage fatigue?
Hello, and welcome to Glioblast-O-Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode, I will answer the question, how do I keep my energy up and manage fatigue. As usual, a couple helpful links are on my show page.
One of the things I wasn’t really prepared for with my recovery from brain surgery and cancer treatment was how my energy would be affected by fatigue.
I knew that chemo and radiation could be taxing, but I kind of expected as I recovered that I would regain energy and activity levels that were on hold during surgery and treatment. I’ve seen many fellow glioblastoma warriors who continue working and doing daily chores, and that does at times make me a little jealous.
But we all have our own path to follow and we can’t expect to have the same experience that others have. My experience was this: once I managed to get completely off the steroids, my energy did fall and fatigue set in. Building it back up has taken me to to try different approaches that were not on my go-to list before surgery.
I found help with a great physiotherapist who has been helping me to change my thinking and understand what I can accomplish by approaching my everyday tasks in a new-to-me way.
Before the brain tumor, exercise would be in a concentrated session. I used to take a one hour boxing class. But now, that chunk of time focused on working out will leave me useless for the rest of the day.
I’ve had to learn that my new normal involves exercise and activity spread out over the day. Fifteen minutes of activity followed by ten minutes of rest. And when I do that, I’m able to function more consistently throughout the day.
Another idea that has helped is the Spoon Theory (see my show notes for a link). This is a simplified idea about how we use energy and it applies to many medical conditions.
It says we have a certain number of spoons per day and each activity uses a certain number of spoons. And once the spoons are gone, our energy is done. It’s a very generalized idea, but the basics are there. Really, it’s about learning new limits and abilities and what will tax our energy and how to manage that.
A big tool for me in managing my energy is napping.
I find that I tend to wake early in the morning but now run out of steam just after lunch time. If I force myself to plow through the day, I can become panicked or confused, maybe even cry at the smallest upset. But if I break up my day with a good nap, I wake up and can re-focus and have a productive afternoon.
For me, I tend to take long naps of on average two hours. Certainly not a power nap. I see it more as a continuation of my disrupted night where I probably got only five or six hours of sleep.
That’s my new normal. It’s certainly a lot of adjustments. Like I’ve had to accept the fact that my sleeping and napping can be very deep. Since my surgery, I don’t think I dream when I’m asleep. Maybe now and then, but I don’t seem to remember any fantastic, crazy dreams like I used to have before the brain tumor.
And sometimes when I wake up from a deep nap, for those first few moments I am a blank slate. I might not remember where I am on the sofa or the bed, who I am, what day it is, if it’s morning, noon or night.
But that quickly dissipates and I get my bearings and can move on with my plans for the afternoon.
So that’s how I manage energy and fatigue: a combination of exercise and a good nap schedule.
Be sure to check out my show page for some helpful links.
Thank you for listening. This has been Glioblast-O-Cast Episode 16.
Theme music for Episode 016: “Blue Ska” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
The Spoon Theory: by Christine Miserando www.butyoudontlooksick.com
Spoon Theory http://me-pedia.org/wiki/Spoon_theory
National Sleep Foundation http://sleepfoundation.org/sleep-topics/napping
Mayo Clinic: Napping Do’s and Don’ts for Healthy Adults www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/napping/art-20048319
TRANSCRIPT
This is Episode 015 of Glioblast-O-Cast. Do I have plans for my journey to the great beyond?
Hello, and welcome to Glioblast-O-Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode, I will answer the question, do I have plans for my journey to the great beyond? Specifically, my funeral plans and a will. In my show notes are some links to tools to help organize your wishes for the end.
While my big plas are to stick around and survive glioblastoma for a long, long time, I can’t deny as a human that at some point this will all come to an end. And arrangements will have to be made.
So even though my most recent MRI was good and clear, I think this is the right time to put my wishes down on paper. It’s much easier to think about this subject when it doesn’t feel like time is running out.
I have thought about it and did some preliminary sorting of my things when my sister visited a year ago to help. But the feelings were not so easy to get past to prepare a full plan, as I was just recovering from some scary scans.
The thoughts of death and being gone felt a little too close to pick out what kind of flower I would want—gerbera daisies, by the way.
Now, though, as I have had a years worth of good, no-new-growth scans, it’s time to be more detailed.
I’m doing my planning in a specific way. Starting with the easiest stuff before getting into any potential emotional areas. This way, it’s a slow path to the big emotions and if the idea of end of life planning is too hard, starting with the easiest steps can help get you to the frame of mind needed for the emotional details.
So for me the first step is an account password list. While plans for the inevitable are not just for cancer patients. We all know we should have a plan, but no one wants to.
I keep a pen and paper address book to list all my online accounts from Amazon to my bank to my medical passwords so they are easily accessible when I forget what they are. I like to hand write it to have a hard copy and to enjoy the process of handwriting. I did read somewhere a long time ago that it helps reinforce memory and brain power if you hand write it.
I also keep passwords and hints in the phonebook app on my cell phone so it’s easy to find them. But there are lots of online options to help you safeguard your important information. And however you decide to list your accounts, keep them in a safe place.
The next step would be to make a list of all the important things you want to leave to people, your jewelry, your books, anything of sentimental value. Now, I would just start with the list. You can always designate a recipient later. But at least you’d have a list to go from.
It may help to take quick photos of your heirlooms. And it also might be good to purge the things that you don’t use, don’t have any emotional attachment to. It’s a good idea to donate, but mostly it’s just to organize and know what you have.
And last, the details for your funeral. What kind of funeral or memorial service do you want? This is a good time to plan your preferences for readings, for music, for flowers. Do you want to be buried? Do you prefer cremation?
I’m considering sending my ashes into space. And there’ll be a link for that on my website as well.
Along with funeral choices, I plan to write my own obituary. I mean, who knows best what happened in my life than me? I shouldn’t leave that to someone else to figure out. I also plan to write letters to my inner circle of friends and family.
Planning all these details and wishes can be emotional. That’s why I look at the individual task, and list, and don’t plan to figure it all out at once. By making these decisions with a clear mind will be a big help to your family when the time comes.
I still carry at the back of my heart the difficulty these decisions were to make when my Mom died. So I really don’t want anyone to have to go through that for me. Once my wishes are noted and easily accessible to my loved ones, then I don’t have to think about them again. Ever.
You can check out my show page where I will have some links for funeral planning.
Thank you for listening. This has been Glioblast-O-Cast Episode 15.
Ideas for Funeral Planning
Checklists: Planning Your Funeral Service www.econdolence.com/plan/tools/planning-funeral-service/
MyWonderfulLife www.mywonderfullife.com
The Good Funeral Guide www.goodfuneralguide.co.uk/the-ceremony/plan-your-own-funeral/
Funeral Wise: Prepare. Celebrate. Remember. www.funeralwise.com/plan/preplanning/
Everplans www.everplans.com/articles/checklist-pre-planning-your-funeral-or-memorial-service
Lexikin: your assets, your wishes. How to plan your own funeral www.lexikin.com/guide/plan-your-own-funeral
Celestial:Memorial Space Flights https://www.celestis.com/
TRANSCRIPT
This is Episode 014 of Glioblast-O-Cast. How do I deal with brain fog and forgetfulness?
Hello, and welcome to Glioblast-O-Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode, I will answer the question, how do I deal with brain fog and forgetfulness? On my show page you'll find some links to help understand brain fog and some tools for brain teasers.
One of my concerns from having brain surgery was would I still be me afterward. The answer to that is, yes, I am still me, only with a few new features. My brain just doesn't work in the same way it did before surgery.
During chemo and radiation, I did experience what is referred to as brain fog. It's a forgetfulness from the initial treatment of surgery, chemo, and radiation. I would find myself walking the three or four steps from the kitchen to the living room and forget why I was there. What was I looking for? Or I might be in the middle of a story about my day, but as soon as my boyfriend would ask a question about what I was saying, I would find myself off track and forgetting the point of my story. Or I might go to the grocery store for a few things like maybe the newspaper, a loaf of bread, some tea, some apples and carrots, simple enough list. But as soon as I would step out the front door, I would forget at least one of the items.
So, I started writing things down in notebooks or on scrap pieces of paper. But, of course, a list is only good if you look at it. There was more than one occasion when I was in the middle of the grocery shopping filling my basket and somehow the list I had in my hand when I walked in was gone, vanished, lost somewhere in the shop. Was it near produce or by the in-store bakery? I would try to remember what I still had to get, but no luck until I got home to see what was missing from the refrigerator. This forgetfulness was annoying and frustrating as it continued even after treatment ended. I wanted my brain back, and I was getting tired of multiple trips to the grocery store each day.
So how did I -- or rather, how do I still deal with the brain fog, the forgetfulness? Keeping up with physical exercise, no matter how little, is helpful, even a short little walk. In addition to all my handwritten lists and notes to self, I started doing daily puzzles. I found it very helpful to have Sudoku books at the easiest level to start and work up as success builds from finishing them.
I also used other brain teasers like the find ten differences between two nearly identical drawings, crossword puzzles at the beginner levels. Not yet ready for the New York Times crossword puzzle, I can tell you. Playing a game of Yahtzee and serving as the scorekeeper, then adding up to see who won. Just little ways to keep my brain active but not overstressed.
Any fun board game that requires counting steps or blocks or card games like Concentration with all the cards face down. You turn over two to see if they match, the object being to remember where a card was when you turn over its mate. I would do small easy challenges to start. So when I was successful and I could solve the Sudoku or the crossword puzzle, then there's nothing to discourage trying again.
It still helps me focus to create a to-do list for the next day just before I go to bed. I don't always get everything done, but it sure feels good to cross something off the list, to accomplish something. It has helped my memory to may make my list, to take a nap every day, and to not be upset when I forget something. Cutting myself some slack has really helped in accepting the situation and finding my own solutions, living with the new normal.
On my show page I will have some links to some brain teasers that might be some fun.
Thank you for listening. This has been Glioblast-O-Cast Episode 14.
Theme music for Epiosde 014: "Private Eye" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
Mayo Clinic: Chemo Brain https://www.mayoclinic.org/diseases-conditions/chemo-brain/symptoms-causes/syc-20351060
Lumosity http://www.lumosity.com
Brain Den www.BrainDen.com
Web Sudoku www.websudoku.com
The Word Search https://thewordsearch.com
Word Games: word search, quote typing, Sudoku, wordoku www.wordgames.com
TRANSCRIPT
This is Episode 013 of Glioblast‑O‑Cast. What about exercise after a brain tumor?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I'll answer the question, what about exercise after a brain tumor. And in my show notes I'll have a couple links to some exercise challenges.
I've never been the most vigilant athlete. I wouldn't even consider myself to be an athlete, but I have always included exercise in my life.
In the past, I have taken aerobics classes, spin classes (my favorite), boxing workouts (my other favorite). I've worked with trainers and had regular routines with free weights and various machines that target specific muscle groups. I use a studio spin cycle at home, or rather I did a lot before the brain tumor.
The month before my seizure that led to my glioblastoma diagnosis, I was on track with the 100s push‑up challenge as well with the 200s sit‑up challenge. But things change with surgery and chemo and radiation.
At first, I was able to begin returning to regular exercise, being a maniac on my studio cycle. But around week 3 or 4 of the 6‑week protocol fatigue set in and my energy level for fitness fell. And then some fear crept in and still wanders around cautioning me for activities like sit‑ups. I worry about bumping my head even on a good mat. So trying to reclaim my pre‑surgery stamina and fitness routine has been a challenge.
I've had to come to some acceptance that right now those old routines are maybe a bit too much. It's not easy to accept the new normal and reconcile what I want to do with what my recovery lets me do.
The things that I found that help me are taking exercise to the simplest action, to base my fitness on walking and building up strength. It is also helping me to work with the physiotherapist who focuses on breathing and relaxation therapy in addition to exercise therapy.
It's certainly an adjustment to sprinkle movement and little bursts of exercise throughout the day and not work out in one concentrated activity, a time lump of an hour or two of weight training or aerobics or cardio. But I'm hoping that this new approach will help me pursue a little fitness goal.
One of my favorite sporting activities is kayaking. I love taking our kayak out on the canals and hope that next year I'll be back to my paddling. With the long‑term goal of paddling the Elfsteden here in The Netherlands. That's a canal tour of the 11 cities in Friesland. Wish me luck.
So my advice is to keep moving. Even the shortest walk around the living room will help. Make goals and go slow.
You can check out my show page for exercise links to the push‑up and sit‑up challenges.
Thanks for listening. This has been Glioblast‑O‑Cast Episode 13.
Theme music for Episode 013: “Happy Rock” Bensound.com
Fitness Links:
One Hundred Pushups: www.hundredpushps.com
Two Hundred Situps: www.twohundredsitups.com
Get fit for free: www.nhs.uk/Livewell/fitness/Pages/free-fitness.aspx
Strength Exercises: www.oncolink.org/support/exercise-cancer/strength-exercises-minimize-the-effects-of=cancer-treatment-on-your-muscles
Livestrong at the YMCA: www.livestrong.org/what-we-do/program/livestrong-at-the-ymca
Physical Activity and the Cancer Patient: www.cancer.org/treatment/survivorship-during-and-after-treatment/staying-active/physical-activity-and-the-cancer-patient
TRANSCRIPT
This is Episode 012 of Glioblast‑O‑Cast. Do I follow a special diet for brain cancer?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I'll answer the question, do I follow a special diet for brain cancer? And on my show page you’ll find a couple helpful links.
When I was first diagnosed after surgery and given the chemo and radiation plan, I asked my doctors about diet. Is there anything special I should be eating? Any specific meal plan that can help?
My doctors said eat what you like, no restrictions.
And I think doctors tend to advise a no hold barred, eat anything, don’t deny yourself culinary delights approach. It seems to me to be along the lines of palliative care—since glioblastoma is considered terminal, the general consensus seems to be enjoy what you want. As long as you eat something and keep up your energy to get through treatment.
But as I did my own research, I kept seeing a lot of information on brain tumors needing sugar—thriving on it and using sugar to grow.
So I try to watch sugar, limit it as much as I can within reason for my life. We eat almost exclusively at home, cooking with fresh produce. My boyfriend even makes homemade past so we control the ingredients—no preservatives.
Every day I also juice with fresh produce like yams, carrots, beets, ginger, and an apple or orange.
One dietary approach that comes up very frequently when researching food choices for glioblastoma patients is the ketogenic diet.
I’ve only done some light research and found good information supporting that lifestyle option for glioblastoma patients. Links will be on the show page.
I’ve seen many other glioblastoma patients finding the ketogentic diet to be a big help. And I am considering it for me. But I do see that it is a big commitment to manage. A certain amount of label reading and planning that I’m just not quite ready for.
The ketogentic diet is high fat, low protein and low carbohydrates.
It’s best to find a trusted nutritionist who can help navigate all the dietary information that’s out there to make the best choices for you.
Like I’ve said before, any treatment plan has to work for you, fit with your lifestyle. If you can’t fully commit to big changes all at once, work towards little improvements.
I still indulge, but I am trying to find a good balance with the smart choices and little treats.
Thanks for listening. This has been Glioblast‑O‑Cast Episode 12.
Theme music for Episode 012: “Country Boy” Bensound.com
Diet Doctor: Making low carb simple (also includes Keto)
www.dietdoctor.com
The Charlie Foundation for Ketogentic Therapies
https://www.charliefoundation.org/ketogenic-therapy/therapies-2/brain-tumor-cancer
Clinical Research
https://clinicaltrials.gov/ct2/results?term=ketogentic+and+cancer
Nature Works Best Cancer Clinic
https://natureworksbest.com/blog/2014/05/27/sugar-feeds-cancer-growth/
Ketogenic Diet Resource: Change Your Diet, Change Your Life
https://www.ketogenic-diet-resource.com/
Eat Meat. Drink Water. Zen and the Art of Zero-Carb Living
https://zerocarbzen.com/
Eating Well: Comprehensive site on basic nutrition
www.eatingwell.com
Juice Recipes that can be sorted by health benefit
www.juicerecipes.com
TRANSCRIPT
This is Episode 011 of Glioblast‑O‑Cast. How do I deal with disappearing friends and family?
Hello. Welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I'll answer the question, how do I deal with disappearing friends and family. In my show notes I have some links to support organizations.
At first when sharing the news of my glioblastoma situation, I had an outpouring of support and well wishes from friends, family, and other people in my extended social circle. Some of them still check up on me, but others have disappeared from regular contact.
So how do I deal with the loss of relationships, the loss of contact with those I care about? I tell myself that everyone has their own battles. Just because they are not sharing their challenges with me doesn't mean they don't exist. And my situation with glioblastoma is no more important than anyone else's life challenges.
I think some people pull away because they feel it's a competition, and their issues don't compare to glioblastoma. But everyone has challenges, and it's not a competition. Though with the scary survival rate of glioblastoma, it is a bit more time sensitive than some other situations.
Yes, it does hurt when people I thought I could rely on just weren't taking an interest. They weren't contacting me. They weren't there. Some have said they figured I had so much to worry about with my diagnosis that they didn't want to bother me. What they end up doing is pulling away completely because they think I have enough to worry about. But this reaction can be hurtful as it essentially negates or cancels the whole history of the friendship, and that's sad.
I try to understand and accept their fear of the situation. I cannot change how they react to my status, but I can empathize with theirs. And I can work to move on from the grieving of a broken connection.
For me it's been important to get to the acceptance that everyone has troubles. And if I want to keep them in my life, I have to make the effort, too, extend the olive branch with no expectation. I can let them know how I feel and that our time together, whether it's on the phone or an actual visit, wouldn't be centered around my diagnosis. It should be enjoying the time and moments and activities of our friendship.
Glioblastoma is only one aspect of my daily life. It's not everything. And once I've made my offer of friendship, I have to leave it up to them to accept and stay in my life. If they choose to maintain a distance, there are always new friends to be made at any age.
Social media, when used to connect with others battling the same awful glioblastoma, or even for partaking in a favorite hobby of past time, the social media has been a sanctuary for me.
While I do have wonderful support in real life on a daily basis, there's a certain comfort in connecting with new friends on the same glioblastoma journey. Or me connecting with other writers and not even bringing up my health status. I can only control my own actions. If I want to talk to an old friend, then I have to make the effort. I can't wait and hope that they do.
I know the disappearing people is not an easy thing to accept or to understand, but the opposite will happen. New people come into our lives all the time, when we start a new job or a new school or a new gym membership. Sometimes we make connections with people that only last a train ride or while we're in line at the grocery store. The trick is to be grateful and appreciative that those friendships even happened. It's okay to be sad when they disappear, but try to be thankful for what they were and look forward to new friends. Always look forward.
When you've had people pull away from you, it may be helpful to turn to different support organizations that deal with these feelings of grief relating to the diagnosis. So, in my show notes, I've got some links to some good organizations that can help deal with the feelings related to the diagnosis and also the feelings of disappearing friends.
Thank you for listening. This is Glioblast‑O‑Cast Episode 11.
Theme music for Episode 011: “Rock on Chicago” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
A short list of some support organizations:
Brain Tumour Alliance Australia: The only national Australian organization for the brain tumour patient, family and caregiver.
a good list of groups
www.btaa.org.au/page/26/support-organisations
Cancer Support Community: So that No One Faces Cancer Alone
www.cancersupportcommunity.org
Chris Elliott Fund End Brain Cancer: Fueling Research & Clinical Enrollment
https://endbraincancer.org/we-can-help/
Imerman Angels: Your One-on-One Cancer Support Community
https://imermanangels.org
Greg's Mission: Providing one-on-one brain tumor support
http://gregsmission.org
TRANSCRIPTION
This is Episode 010 of Glioblast‑O‑Cast: How and when do I tell people about my brain tumor?
Hello. Welcome to Glioblast-O-Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I'll answer the question how and when do I tell people about my brain tumor. And on my show page I have copies of my announcements regarding my GBM diagnosis.
Being told you have a brain tumor is certainly a difficult conversation. Those life altering words are usually a shock, unexpected, and scary. But it is nearly as difficult to tell friends and family of the diagnosis.
As I see it, when sharing bad news, there are three groups of people to inform. Group A, your close friends and family, Group B, coworkers, other friends, acquaintances, neighbors, other people you know, and, Group C, strangers.
I'll start with Group A. If at all possible, the close friends and family should be told face to face. It was a dizzying effect when I was told the day before my 49th birthday that I had a lesion on my brain. I was alone for my appointment as my boyfriend was away on work, so we weren't prepared for bad news. After all, it was a Friday late afternoon. My boyfriend had tried to ease any fears by trying to convince me that they don't give bad news late Friday heading into the weekend. But they do.
As we didn't know much more than that, we decided not to tell anyone until we had the details. Within a few days, we met with the neurosurgeon and decided on surgery, no biopsy, just straight take the darn thing out. The thought of brain surgery was scary and had me worried about how I would be afterwards. Would I have memory loss? Would I still be me? Would I die?
At that pointy decided I needed to let family and close friends know the situation and our decision for surgery. Considering that this was my brain and very serious surgery, I wanted to tell my family and close friends what was going on, but I wanted to do it in person so they could see me and see how I was and hopefully take some of the fear away from them. And then I could see them one last time while I was still 100% me, just in case I wasn't me or didn't remember them after surgery.
It wasn't easy to arrange talking to close friends and family. I had moved to The Netherlands a couple years prior, so we were many times zones away from Arizona and Oregon and California where my family and friends live. But I'm thankful to be living in a time where technology has brought us online video chatting via Google Hangouts or Skype. Talking face to face was important, and my schedule was full before surgery with chat appointments.
Then after surgery and when pathology results were in, and we had the appointment with the neurosurgeon, it took a weekend to comprehend the diagnosis of glioblastoma. And then I had another round of video calls to friends and family so they could know my bad news.
I didn't cry when delivering my bad news and felt a bit guilty for making others sad. The hardest part was not being able to hug anyone and let them know that I was okay and doing everything I can to fight it.
Group B, coworkers and other friends, acquaintances, etc. As I was working freelance as a graphic designer prior to my seizure, I had some regular clients and found that I had to inform them of my health‑related retirement. For my former clients, it had to be email with a prepared statement. Letting other acquaintances know, it was mostly through social media, so it was a short carefully‑worded post. You can see my show notes for my bad news post.
Group C. When it comes to strangers, it really depends on the situation. Fumbling with my wallet and trying to find correct change and taking up the clerk's time at the grocery store, I might explain quickly that I had a brain tumor and leave it at that.
When treatment had ended and I had regained some stamina, my sister came for a visit. We did some weekend excursions. Being out and about, I found no reason to discuss my diagnosis. Except one evening we were at a restaurant with many TV monitors with music videos playing and lots of lights flashing. Concerned about the possibility that the flashing could cause a seizure, I asked the waitress and manager if they would do something as I have epilepsy. That's all they needed to know. So, strangers really are on a need‑to‑know basis. I only mention my diagnosis if necessary.
When my boyfriend and I went to Spain a couple months ago, there were no situations that required sharing my diagnosis. I can say it was great to be a tourist and not a patient for a few weeks.
When I do tell people because they ask, generally, I am blunt, to the point, and open about my situation. But I always try to share my status in the most positive way. I don't need an awkward sad moment because hearing of the diagnosis is usually a shock to people, and they don't know quite how to respond. So, for those situations, I've found it's good to prepare yourself with some comfortable key responses and statements that you can use when you need to because humans are curious, and you will be asked about your situation.
On my show page, you'll find my social media posts that helped me at the start of my journey with glioblastoma.
Thank you for listening. This has been Glioblast‑O‑Cast Episode 10.
Theme music for Episode 010: “Cute” Bensound.com
Facebook announcement
I have been writing this update in my head for a couple days, trying to find the funniest approach to a serious subject.
WARNING: The following may include blunt, sad, crappy, unpleasant news that I am expecting to have a good outcome. But if you are not in a mood for blunt, sad, crappy or unpleasant news, please just skip it.
There. You have been warned.
It seems that I have a brain tumor and this coming Thursday a neurosurgeon will be evicting that little bugger. It’s a small tumor of unknown origin and it’s in a bit of a tricky spot. But, my surgical team has a plan and really cool tools. I’m keeping my fingers crossed and have requested that the neurosurgeon keeps his uncrossed--for obvious reasons. I’ve been fully scanned and so far it looks like a lone invader. So that’s good. I will be in hospital for a couple days and then home. I am prepping some blog posts and FAQ’s for after the “grand opening”. I’m mostly okay with moments of thinking that this is a very weird and not so great dream. It is a surreal and odd experience that I don’t recommend. But I have wonderful support from my guy and my family. For now, it would be nice to know that the atmosphere is filled with whatever warm wishes, good thoughts and prayers for success anyone wants to offer. I am fine answering any questions through private messages. And for those that might want to send something, links to stupid/funny/awww-some animal videos are always welcome.
Thanks for your time.
Facebook return home
Hey Friends!
So, I’m home now. Actually, it’s my third day home and I’m amazed at how I am recovering and still feeling like me. I know surgery of any kind is scary and anything can happen. Anything did happen, as I did have a collapsed lung, but that’s all healed and reinflated. Not quite ready for a marathon, but I am doing very well. Like I said, surgery is scary. And I think people are especially scared of brain surgery. Yes, that’s what I had. Brain Surgery. And I am very fortunate, and grateful, and happy, and and and. And I am completely open to any questions or comments. Anything anyone wants to know in as much or little detail as I can manage. But let’s keep that as private messages.But let's keep that as private messages. But let's keep that as private messages. But let's keep that as private messages. But let's keep that as private messageBut let’s keep that as privatemessages
I don’t look like Frankenstein. It does feel totally weird. But I am still me, talking, thinking, planning, and most definitely breathing. But to start off, here are three things I learned. Not the only three things, just some ice breakers.
- However bad you think it will hurt, it probably won’t. Sure accidentally hammering your finger and breaking it hurts a boatload (I did that once). But I think that’s from having no anticipation. Anticipation builds things to be far worse than they probably will be.
- We all have at least one bad haircut in our lifetime. With any luck, it won’t be immortalized in your school yearbook photo. Hair grows back.
- No matter what I do, I think I will always overpack—just a little. Five days in the hospital and I didn’t consider that the hospital gown is provided. Too many comfy t-shirts, fuzzy socks and underwear. There’s really no need for underwear with a catheter (sorry if that is TMI).
Thanks for all your love and support. And keep the stupid pet videos coming!
Facebook update
Hello Friends!
All my stitches are now gone...the ones from the chest tube and the ones from the back of my head. No, I did not get a zipper for my skull. And whether you were wondering or not, technology is not so advanced to perform brain surgery like a Fantastic Voyage or Innerspace extravaganza. Everyday my scalp feels just a little less strange. I’m not so wobbly anymore, either. But I am taking it easy and wouldn’t mind some reading recommendations. Also some suggestions for ebook apps for my tablet (it’s a Sony).
Thanks!!
Facebook diagnosis and treatment
Hey FB friends!
Today marks the start of Week 2 of the double-whammy—concurrent radiation (Mon-Fri) & daily chemo (pills, no needles. YAY!). And I feel pretty good. Though from what I’ve read, weeks 1 & 2 are a breeze, it’s the last 4 weeks that might be ooky. So I guess you’re wondering what this 6-week treatment is for? Well, it turns out that my brain tumor that was evicted on Feb 18 was a stage 4 glioblastoma multiforme. I know, those are big words. It means I have brain cancer. Brain cancer that is really bad, malignant, aggressive. The same crappy invader that took the lives of George Gershwin, Ethel Merman and Ted Kennedy, and if you Google (don’t Google it) you’ll find that the average survival rate is not much better than a fruit fly...But on the bright side mine was small. And I think we caught it early. And I had a fabulous neurosurgeon. And the tests indicate that there is a better chance of success from the chemo. And there are cases of survivors outlasting the average by 8, 10, even 20 times. I am super-blessed to have a whole stupendous network of great friends and well-wishers from all over the globe. So I am keeping positive, eating right and forging ahead.
Now, to answer the most un-asked question: No. Two doctors have confirmed that I will NOT glow in the dark from the radiation. Yes, that is a bit of a buzzkill disappointment but at least I have my radiation shoes with neon green laces.
I’m in the midst of setting up a blog with more info as well as my perspective on this experience. I should have a link soon.
Thanks for reading!
Facebook treatment over
Hey FB friends,
WARNING: the attached photo is my attempt at looking excited in the radiation mask. I thought it might be fun to share. It’s not so easy to show any expression when clamped in for the head zapping. The radiation DID NOT hurt in any way.
So yesterday was the end of my radiation treatments! I finished the 6 weeks of 30 total treatments with the wonderful support of kind and super friendly technicians. And only minor hair loss that gives me a cool punk rock style without the need to visit a salon. Still debating on coloring the rest in random unnatural shades. And chemo is also done for this round, stopped at 4 weeks instead of 6 because, if you didn’t know, chemo is basically poison and it can decimate the blood. But, we are expecting the blood values to return from their little siesta so in a month the next chemo adventure can begin.
It’s a good day today!
Facebook first MRI results
Hey FB friends!!
Some good news for me today!
I had my first MRI following the initial treatment of chemo+radiation. And while I was obviously concerned, scared, nervous, worried, hopeful, and any other emotion you can imagine, I am super happy that the results are good. No new brain tumor growth of any kind! And next week we can plan the next steps in this continuing saga. Because though this is fabulous news for today, this kind of cancer means I don’t get to wear a “cancer-free” t-shirt. Ever. That’s just the short straw I drew. But the way I look at it, though I may never get “out of the woods,” there are some interesting things in the forest. And adventures to be had. Bears to meet, trees to climb. And I don’t have to feel that mix of emotions and dread for the next MRI for another 3 whole months. I’m so happy I could sing, but then we’d have to replace all the windows.
Facebook 6 months
So I am considering today a slight mini-milestone of sorts. It’s actually 6 months from the grand opening of my brain, the surgery to remove the tiny little 9-millimeter tumor. I don’t want to look at this as a big event, a great marker toward the road to fighting cancer because I really would prefer to celebrate longer accomplishments like years or decades. But because this is the start of this odyssey and because this particular style of brain invader usually has it’s own brief expiration date, I am celebrating every little milestone that makes sense. I mean, really my favorite number is 8 so it would have made more sense to hold off until the 8 month milestone, at least for me. But then I thought people would think that’s a bit odd and there would be questions why 8 months? So, I will jump on this 6 month milestone and save a few oddities for the 8 month. So I will share my update, and it may be lengthy for no other reason than the keyboard is feeling quite fun tonight.
Anyway, here is where I am with treatment. For a few weeks now, I am off all medication (except for epilepsy because, well, seizure prevention) and chemo and radiation. Actually, the radiation stopped right on schedule, completing the standard 6 weeks. My hair took a little while to react and kept on falling out in the designated areas. It’s now coming back just enough to hide the two chosen bald spots. So, yeah, that’s happening.
The chemo wasn’t as long-lasting as the radiation. And that’s a bit of an annoyance and disappointment. After 4 weeks, the temo-chemo was stopped because it really ripped through my system leading to not-fun allergic reactions to 2 platelet transfusions. Things took a long time to recover from the temo-chemo and my blood levels are still not groovy. But, that meant no more temo-chemo because of the time in the delays. So, now we do the passive wait and see with the next MRI next month.
I can tell you that the wait and see approach has taken me a while to get into acceptance. I want to do something to fight this darn thing. But, really, the best thing I can do is take a more proactive approach to life. Enjoying life and trying not to get weighed down by the doom and gloom that hangs out in cancer whispers. That’s one reason I share. I think that facing this thing head on (sorry for the pun) is the best way for me to battle it, not keep it locked up in whispers and gloom. It’s a fact of life and I can’t spend too much time being scared or sad or regretful. Everyone has their own challenges and tests and basic crap situations to deal with.
This is my crap and I am, for lack of a better word at the moment, fighting it all the way.
TRANSCRIPT
This is Episode 9 of Glioblast‑O‑Cast. How do I stay positive?
Hello. Welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I answer the question, how do I stay positive? And a bit of a warning, it’s clichés galore today.
Receiving a glioblastoma diagnosis is certainly a life-altering, shocking and devastating situation. I take it very seriously that the general prognosis for survival is given in months and not years.
Like other glioblastoma patients, and caregivers, it’s a part of my daily thoughts. But early on in my journey I decided—with my boyfriend, we decided—to live by one primary notion: to live by the facts, not by the statistics.
So, the average survival is around 14 months, but there’s no hard and fast rule about that. A statistic is just a statistic, it’s not a certainty. There are survivors that are beyond one, two, five or ten years.
Yes, there are not so many but it can happen and there’s no reason to resign my fate to the statistics. No reason I cannot be a long-term survivor.
So one of the keys I believe is to be positive. That’s my blood type, so I might as well follow it. But be positive most of the time. Now, why do I say most of the time? Why not be positive all the time?
As a human, I have a full range of emotions: happy, sad, angry, annoyed, thrilled, loved, surprised.
Holding the bad and sad stuff in or keeping it at a distance, that’s not healthy. It will come back in a hard shot.
So once in a while, I allow myself to have a good cry. Usually in the shower. Like my Mom always said, let your troubles go down the drain with the bath water.
My Mom had that kind of positive outlook. Her words resonate with me every day. And even the cliché sayings that seem to drive all cancer patients crazy as they aren’t really helpful.
But the one that helps me when I imagine my Mom’s voice saying, God doesn’t vie you any more than you can handle.When I think of my Mom saying that, it does help me. It gives me strength to keep moving forward.
A big part of keeping my positive attitude is to always have plans. Something to look forward to. Something I enjoy. Some kind of life goal. Basically, a bucket list. A list of things to do before you kick the bucket—meaning before you die.
Sure, it’s another cliché—having a bucket list—but for me the core of that is to make plans and enjoy life, however much we might have left.
So, my diagnosis of glioblastoma has fast-tracked me to pursue thing s on my some-day list and do them now.
No time like the present. Yet another cliché, but a good one for cancer patients. Don’t let a diagnosis and treatment hold you back. There may be limitations for certain activities, but if you take precautions you can follow your goals and wishes. Do things you enjoy with the people you love.
I make plans MRI to MRI, and a bit beyond now. Humans need goals and plans. Without that, it’s just waiting to die.
The plans don’t need to be extravagant. They could be as simple as a Saturday walk in the woods, or a weekly game of Monopoly with friends, or plan a weekend get away or taking a trip to a museum or maybe an art class, getting concert or sport tickets.
Really, I just don’t let the diagnosis stop me from living my life. I try to find the bright side, no matter how small.
Like I titled my podcast with a bit of whimsy—Glioblast-O-Cast.
Thank you for listening. This has been Glioblast‑O‑Cast Episode 9.
Theme music for Episode 009: “Energy” Bensound.com
TRANSCRIPT (links to follow)
This is Episode 8 of Glioblast‑O‑Cast. Did I try crowdfunding?
Hello. Welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I answer the question, did I try crowdfunding? And in my show notes I'll have a list of tips for running a crowdfunding campaign, including some links to crowdfunding websites.
It can be humbling and awkward to put into words when you need help, especially when your world has been flipped around from the reality of a glioblastoma diagnosis. Even with good medical insurance, the financial challenges surrounding glioblastoma can be more than you might be prepared for.
Crowdfunding with many websites dedicated to that is a fairly easy way to receive donations from family, friends, coworkers, neighbors, former or current classmates, basically, people who want to help you with the difficult situation like glioblastoma.
But before you set up a crowdfunding website, it's a good idea to discuss this with your tax preparer to be sure you're not going to have any obligations.
Because you can't always prepare for a catastrophic diagnosis and the associated costs, crowdfunding is one option that, if done right, can be very successful. I ran a campaign at the end of 2016. For me, I was fortunate to not have any financial worries regarding my treatment. But there was something that my circle of people could help with.
Since having surgery, and then going through many weeks of a possible recurrence, I really wanted some family around, but I didn't have the money for international travel, nor did I want to subject my delicate recovering brain to the pressure of flying for ten or more hours.
My sister hadn't been to visit me. And we had talked about, you know, some day she'll come and visit. Well, when you have a diagnosis like glioblastoma and you get scary MRIs, you kind of want some family around. So we planned a fundraiser to cover as many costs as possible for my sister to make the trip. She could help me sort out some things and we would have some fun together.
It was actually a two‑fold treat, as my sister is also a cancer survivor. Her challenge being colon and breast cancer and also being a single mom who hadn't been on a real vacation in years. So this was a really good plan for us. I would get the family support of having my sister visit for five weeks and she would get a trip of a lifetime.
So we set up an account with GoFundMe. There are other platforms, but this one was easy and it worked for us. On my show page, I will have my list of pointers to running a campaign as well as the story we used for ours.
My sister and I had a great time. We were able to discuss some plans for the eventual end of life, but the trip was more than that. It was great to have my sister with me for five weeks to make some new memories, and we got to do some traveling and just have fun.
Our campaign was fully funded in just three days with a couple hundred over the goal of $5,500. I have some highlights of my advice. First of all, make time to manage your campaign. There are so many worthy causes out there these days, and you need to be proactive in publicizing your story. Just putting it out there isn't really enough.
It may help to have someone from your circle who is good at marketing give you a hand. When I ran my campaign, it was important to update as we hit certain milestones. But you don't want to update too often and annoy your circle of friends.
Another point I want to make is it's important to spend time crafting your story. One big point I like to make is that anyone going to your fundraising page will know you're asking for financial support. So it's important to be up front. Don't be shy about how much you're asking for and how you will use the donations.
It's also important to be mindful of formatting your story so that it's easy to read and easy to read quickly. It's good to use paragraphs, bold type, headlines. And a final point I'd like to make is be timely with your thank yous. For me it was easy to send a quick little thank you as soon as I got notified of the donation. That way I wasn't going to have to do it all at once.
If you choose to try crowdfunding, I have one last bit of advice. Don't try to get donations or expect anyone to share your campaign link from glioblastoma or brain cancer groups on Facebook.
Remember that other members are in a similar situation and likely cannot contribute. And they probably won't share your campaign with their network of people. With crowdfunding, I see it as a one‑shot Dole. Pretty much you have just one chance to ask. And other glioblastoma patients need to save their asking for themselves if they decide to go the crowdfunding route.
Thank you for listening. This has been Glioblast‑O‑Cast Episode 8.
Theme music for Episode 008: “Ukulele” Bensound.com
My Advice on Crowdfunding
Crowdfunding can be a helpful tool in getting through treatment and minimizing the added stress of financial obligations.
I ran a campaign that met its goal of $5,500 in only 3 days 2 hours 42 minutes. Here are my tips for running a campaign.
Where to crowdfund?
Find a reputable crowdfunding site that isn’t dependent on meeting the full goal. Some sites allow you to keep all of the donations, less their processing fee, regardless of meeting your full goal. Other crowdfunding only pays if the full goal is met. I used GoFundMe because of their track record, ease of setup and that the donations would all be available even if the full goal was not met.
Since they had a certain small processing fee, we figured what the amount was that we needed ($5000), and then added an extra amount to cover the fees ($500). I know some people are wary of the fees from crowdfunding sites, but consider that if your supporters were to mail you a check or cash, how much of a hassle that might be to deposit all the checks and money into your bank account. Plus, the crowdfunding sites make the donation process quick and easy, no envelope or postage required.
A selection of potential crowdfunding sites:
Go Fund Me www.gofundme.com
YouCaring & GiveForward (now one group) www.youcaring.com/c/medical-fundraising
Plum Fund www.plumfund.com/medical-fund/
My Cause Crowdfunding for medical bills: surgery, treatment, expenses (Australia) www.mycause.com.au/personal-cause-crowdfunding/medical-bills-surgery-treatment
Writing the Story
Start with a headline that grabs attention and tells what the funds will be used for. Short and to the point, but also eye catching.
Next, have one or two sentences that sums up “The Ask”. This should tell why you are asking for donations and how those donations will be used. People visiting a crowdfunding site already know you will be asking for money. Get it out there straight away. Don’t hide it. Follow proven techniques for reaching your audience.
And realize your audience is not your family or your family, friends, coworkers and neighbors—I’ll call them your core group. They probably already know your story and your financial need. You are NOT preparing your story for them. Your story is for the extended circle that is told about your fundraiser through your core group.
So writing your story should be as if the reader doesn’t know you and you are personally asking them for help. Avoid phrases that make assumptions of the reader’s knowledge of your situation. Don’t use “As you know” type of sentences because your reader doesn’t know yet.
Separate into short paragraphs. There are so many worthy causes out there and if it looks like one big, giant, unending hunk of text, it will look like it’s a chore to read and who has time for that? You want to keep the reader engaged with your story. You don’t want them clicking away before they have finished reading. Little paragraphs are easy to get through.
Format your story like a 7th grade journalism class. Start with the overall statements and work towards more detail. This way, the reader has a good sense of your situation and can stop reading any time and click donate. Or they can continue for the whole thing. But don’t burden them with having to look for the request and your details.
Use headlines and formatting like bold or italic text or underlining. But use it sparingly, for only the important points that can allow the reader to scan and still understand your story.
I wrote my story (which will follow) in sections like a frequently asked questions page. I thought about what I would want to know about a campaign, what questions I would ask. Most people won’t ask the questions that will satisfy their decision to contribute. But if that information isn’t in your story, they might not donate. Be open and honest and cover the details as quickly as you can.
Include pictures, but not too many. Your core audience will want to see who you are, but they won’t want to scroll through more than a couple. I only used a picture of me and one of my sister that I put together into one picture. Since we are far away, I didn’t want to use a photo of us together. Using two separate photos side by side helped illustrate that the goal was for the funds to bring us together.
Managing and marketing the campaign
Update your campaign as you hit milestones. When we were around 50% funded, I added a thank you and request for continued support to meet our goals.
Be thankful and timely. I decided to send a thank you to donors as soon as I received the notification of the donation. GoFundMe has an option to do that. I figured it would be easier to send the thanks right away, which turned out to be good as we had over 60 separate donations. Think how tedious and time consuming that would be to do all at once. Sending them as they happened kept it under control.
And I wrote each thank you from scratch. I didn’t send a pre-written thanks. I felt it was important to make it personal. But for some, it may be easier to write a good, standard thank you that expresses how grateful you are for the donation. I also wanted to include our donors on the adventures my sister and I had, so I asked for mailing addresses so I could send a postcard to our supporters. Not everyone provided their address, but many did and it was a fun thing to do.
Thank you’s don’t have to be long. But they are import. You can even include a request for your donors to share your story with their network.
Be your own first donor. Or get a close friend to donate right away, before you start sharing your campaign. Remember, your audience is made up of donors who don’t know you well. People may wonder why your campaign is stuck at zero funds. There’s a group mentality that no one wants to be the first, but if it’s already gaining donations your audience will be encouraged to help your worthy request. It’s already been validated by the list of donations.
Market your campaign and ASK for people to share your story. It’s called crowdfunding for a reason. It needs a crowd. Using Facebook or other social media is a good first step. But think of other ways, too.
Use your email list and send a short message about your campaign with the link to donate. But be sure that if it’s a mass email, that you don’t include every email in the “To” section. Use the BCC if you do a mass email so that you are not sharing email addresses without permission. Or send individual emails.
Find other ways to spread your news and link to your crowdfunding campaign such as: through your high school or college organizations. Contact your church or community center. Look to former places of employment (that you left on good terms). See if your local grocery store, gym, or favorite restaurant has a community bulletin board.
On Facebook, if you are a member of private glioblastoma or other cancer groups, don’t solicit donations there. All the other members are in the same boat, the same situation. And with crowdfunding, you really only have one shot at asking your contacts for donations. So with others facing the same health financial crisis, they need to save their contacts for their own potential campaign.
Here’s my campaign.
Send me my sister for a month!
The request:
I am hoping to raise the funds to have my sister Amy come to Europe for a month to help me organize my brain cancer situation. I want Amy to help me sort out my end of life, our family mementos that I have that should be shared with my nieces and nephews, and also to have a little bit of final fun together. After all, she’s the first best friend I ever had.
Why Europe:
I have lived in The Netherlands for the past 3 years (more on that later) and considering my diagnosis and current condition, it’s just not wise to subject my brain to the pressure and stress of air travel.
Here’s the situation:
I have Glioblastoma, the worst of the worst brain cancers. It’s super-aggressive and has a very bleak general prognosis. Of course every patient and situation is different, but the odds are pretty ugly. I’ve been dealing with the medical diagnosis and treatment cycle since December 2015 and all of 2016. It’s getting a bit bleak (I will explain more below).
How did it start:
Christmas Eve 2015 I was woken up by paramedics in the bedroom asking me to get myself together and come downstairs at around 3 am. At first, I didn’t understand why we had guests and wondered if I should make a pot of coffee. They asked me questions about how I was feeling and then told me that I had a seizure. I told them no, I didn’t. I was just sleeping. Then they pointed out the thing stuck to my chest. They told me I had a seizure. But that it takes more than one seizure to be Epilepsy. Had I had others? At that moment, my answer was no. But in retrospect, I had had times over the past 3 years where I had unexplained instances of biting my tongue—a typical indication of a seizure.
As you can imagine, I was a bit more than concerned at this event. And the day before Christmas. Not knowing exactly what happened, we still enjoyed a nice holiday with Sytze’s family. I scheduled an appointment with our family doctor for the next available appointment. She told me the same thing. It takes more than one seizure to be diagnosed as Epilepsy. I could wait and see if it happens again. But I wanted to know. I needed to know. So she sent me to a neurologist, who said the same exact thing—more than one seizure to be Epilepsy. But I still needed to know what happened. So she scheduled an MRI and EEG.
Two weeks later, the day before my 49th birthday, I was told there was a legion on my brain. And I can tell you that news really hit me. I’m still not sure how I was able to walk through the hospital to get a mammogram straight away to rule out metastasized breast cancer as the cause. Thankfully, that wasn’t the case. Just a lonely little brain tumor flying solo.
To really explain the impact and significance of the timing, understand that my mother died from Ovarian cancer at the age of 48 after having survived breast cancer five years earlier. I had passed those thresholds and stupidly thought I was free and clear to look forward to a long life. Don’t get me wrong, it’s not over yet. And I have my Mom’s fighting spirit close in my heart. If I could smash and pummel this darn thing, I would give it everything I got. I’ve taken boxing classes.
About surgery, etc.:
The initial tumor was 9 millimeters, so of course I joke that my brain made its own bullet.
I’ve had one surgery in Feb 2016 that left me with an exclamation point of a scar on the back of my head. And an odd haircut. Most people who have surgery for a brain tumor get a question mark of a scar, but because they were able to go in and sneak up on the tumor from the back, I have an exclamation point. I ended up in the hospital a couple extra days because during the surgery I had a collapsed lung that the doctors were able to reinflate.
A couple weeks after surgery when I had healed a bit, we started simultaneous chemotherapy and radiation. We had to stop the chemo early because it really destroyed my blood and lead to two transfusions of platelets and one regular blood transfusion. The platelets were an experience as I had allergic reactions both times and ended up covered in hives for a couple hours. But my blood levels still are below normal and I get worn out after a nice walk around town.
My most recent MRI has indicated that in all likelihood the tumor is regrowing. My doctors cannot confirm 100% without going back in through surgery and they don’t recommend it. In fact, they told me that another surgery would likely leave me paralyzed in some way and that they probably could not remove enough of the offending tissue. The tumor site is buried deep in the center of my brain and the first operation was just super-lucky. It was a very tricky procedure that my surgeon had never done before (though of course he had operated on many brains, just not in this style).
And, they can’t give me the standard chemo because of my past reaction.
And, they say they need to wait a year for possibly more radiation because I’ve already had the maximum amount.
But we don’t know if I have a year. If you Google glioblastoma (and I say try to avoid it because it’s depressing), you’ll find that the average survival rate is just about 18 months or so from diagnosis. I am now at 8 months post seizure incident, 5 months post surgery. But it doesn’t help that it seems to be reactivated so soon.
I’m lucky that I had any surgery at all as well as the chemo and radiation. And I’m lucky to have the time to figure out my “wishes”, which is why I am here. I want to have my sister Amy come for a visit to help me sort out my end-of-life stuff such as what to do with photos and mementos. And, to have a good time. She really deserves it.
Why my sister Amy:
Because she’s been through her own cancer ordeal. Amy is a 5-year colon cancer survivor who was fortunate to have caught it in time to only require surgery. But then she found out that she was positive for the breast cancer gene and had a preventative double mastectomy, all while raising four of the most amazing kids. And without any complaints. She’s a real inspiration to me. But she hasn’t had a decent vacation or getaway in years. So I need her and she needs to come to me in The Netherlands.
Where in the world is Meg:
Now, I’m sure you’re wondering about The Netherlands. I moved to Stavoren, Netherlands, in December 2013 after reconnecting with the love of my life who I met on my journey through Europe in 1988. Sytze and I are so happy to have started a life together after so many years apart. We just fit together. We just never thought we’d be battling this rotten tiny invader and have to make such difficult decisions. We thought we’d have more time together than we seem to be facing at the moment due to my brain cancer diagnosis. But this is the best place for me. Stavoren is the oldest city in Friesland (the area of the Netherlands where we live). It’s less than a thousand people who are all friendly and have embraced me with big hearts.
What about my sister Joy:
I would love to have her here too! But Joy recently had spinal surgery and she is in the middle of recovery. The flight time and connections would not do her recovery any good right now. I have to think about her well-being, too. She needs to be fit for her two wonderful teenagers and super-supportive husband.
Got questions?
I am more than willing to answer anything about my situation for those interested.
TRANSCRIPT (links to follow)
This is Episode 007 of Glioblast‑O‑Cast: Why a Podcast and not a Blog?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I'll answer the question, why a podcast and not a blog. In my show notes I'll have some links to other brain tumor blogs that may give you some inspiration and their perspective on living beyond the brain tumor.
One way some patients and care givers find to cope and make sense is to keep a journal or a blog to share their experience with a glioblastoma or another brain tumor.
When I was first diagnosed, I really wanted to blog. It would be a way for me to also keep my friends and family updated without having to repeat my story too many times.
But as I started to delve into reading other blogs for inspiration, I found my attention span for reading was a bit unpredictable since my surgery and treatment. And I felt focusing on a blog might not be the right form for me.
So a little bit about me is I have always had a volunteering spirit. Before I moved to The Netherlands, my Saturdays were dedicated to Habitat for Humanity, but with my new situation and my newfound clumsiness for bumping my head, with or without a hard hat, that kind of volunteering didn't feel like a good idea for my brain.
And finding myself basically retired due to my diagnosis of glioblastoma and my scattered attention span, I needed something to occupy time on a day‑to‑day basis, something to look forward to at my own new pace.
And I thought more about blogging, but I had other writing goals, like finishing my novella and publishing that. That's still a project in process.
When facing a terminal diagnosis, I think it's pretty natural to review and take stock of one's life, see what other goals you want to achieve, what you wished you had done, and what you can do now. So I started remembering one part of my life's education, when I went to radio broadcast school.
For a time I was an intern, and that developed into a part‑time job at KOY and Y95 in Phoenix. I assisted the news reporter. I rewrote articles, and I even wrote the shortest daily horoscopes and did some weather announcing. But unless you are a big name personality or part of the sales force, there's really no money in radio. At that point I moved on to graphic design. So that dream of being a radio star went by the wayside.
My desire to blog was still percolating and my taking stock of my life, it hit me that a podcast was a way to share my journey while pursuing that long‑forgotten pursuit. And the more I thought about it, the more I started to realize that a podcast was a unique method to share my story on a more personal level.
It's easy to read someone's blog, but I think it feel as bit more real if I'm just talking to you and sharing my experience. And that's when I found LibriVox, which is a really wonderful organization that creates audio books for books in the public domain. And they're completely free to listen to.
I started reading or voicing for LibriVox and set up my little studio and came up with my podcast plan. Now I'm seven episodes in and really enjoying my podcast experience.
So my advice is don't let a glioblastoma diagnosis rule your life. Continue to pursue your goals and reconnect with your forgotten dreams.
Some may wonder why not a video. I could be on YouTube. There's a lot of people on YouTube. Well, I'm camera shy.
Thank you for listening. This has been Glioblast‑O‑Cast Episode 7.
Theme music for Episode 007: “Beach Party” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
Glioblastoma survivors’ blogs & sites
Ben Williams, surviving since 1995 https://virtualtriasl.com/williams.cfm
Cheryl Broyles, surviving since 2000
http://www.cherylbroyles-gbm.com/
Greg Cantwell, surviving since 2004
Greg’s Mission is a support site and blog
www.gregsmission.org
Chad, surviving since 2012
https://thebrainchancery.com/
Whitney Glenz, writing about her Dad’s survival since 2013
Dad’s Fight to Beat Brain Cancer
www.bthocancer.blogspot.com
Dave Bolton, surviving since 2014
www.journey4survival.co.uk
Steve Durrant, surviving since 2015 https://whatdoicallmybraintumourblog.wordpress.com
Beth, surviving since 2015 https://braintumorjourney.wordpress.com/
Andrea Guillaume, writing about her husband, Darrell’s survival since 2016
www.braincanceris.blogspot.com
Sam Taylor, surviving since 2016
Cancer Cure Bus on YouTube
A collection of survivor stories: Glioblastoma and other diagnoses https://virtualtrials.com/survive.cfm
Survivors of other brain tumors-- blogs & sites
Liz Salmi, surviving since 2008 Gemistocytic astrocytoma www.thelizarmy.com
Jessica Oldwyn, surviving since 2010 Diffuse astrocytoma
Toom-ah? What stinkin’ toom-ah!
www.jessicaoldwyn.blogspot.com
Geraldine DeRuiter, surviving since 2012 www.everywhereist.com/tag/brain-tumor/
Gideon Burrows, surviving since 2012 Ogliodendroglioma
Bicycles and Brain Tumors
http://www.ngomedia.org.uk/tumourist/
Rachel Coles, surviving since 2014 400,000,000 to 1 www.rachelcole226.wordpress.com
Matthew Kendall, surviving since 2014
www.cranialcoffee.com
Nick Squires, surviving since 2016 Ogliodendroglioma www.journeybraincancer.com
TRANSCRIPT (links to follow)
This is Episode 006 of Glioblast‑O‑Cast. What about supplements and alternative treatments?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I'll answer the question: What about supplements and alternative treatments? I'll share what I have tried and what I still take and what I plan to try next.
Before I get into my approach to supplements and alternative treatments, please understand that this is about my specific journey, and in no way am I advising any specific supplement or alternative treatment to substitute for medical care. The best course for adding supplements and alternatives is to consult a naturopathic oncologist to find the plan that works for you.
At first I did consult two different experts for treatment. But for various personal choices, I ended up doing my own research and deciding what made sense to me.
So this episode is really about how to be smart about alternative options if you don't have access to a naturopathic oncologist or just want to find your own options.
Again, if you are able, always consult a professional doctor.
My method is all about one step at a time. I know there are many options of supplements that can help with symptoms of glioblastoma treatment. And at first, there's that almost panic feeling of wanting to throw everything that might help at the brain tumor.
But my reason for one new thing at a time is to be sure that the new thing works for me, to make sure I don't have an adverse reaction to something most people can tolerate. I will absolutely never forget my platelet transfusion reaction. And you can check Episode 4, what was chemo like, for that story.
What I discussed in Episode 5 about finding reliable information still holds for alternative treatment and supplements.
Be wary of sites that have an abundance of advertisements, and look for information with science and official studies to support the supplements' use.
Read the ingredients list and know what the potential side effects are and if it might counteract your current treatment and other medication.
And always discuss your plans with your doctor.
Since my oncologist gave me the news of the hospital's decision not to continue my treatment with the standard Temodal and gave me no other medical options, I have added supplements to my daily routine. You can see my show notes for links to some of these supplements.
In addition to Keppra, which I take to control seizures, I take capsules of Boswellia. I take Curcumin with Bioperine. I take chlorella, and I juice every day.
Next on my list is to add milk thistle and see if that works for me. And I'm researching hyperbaric oxygen treatment as well as medical marijuana.
So I can say so far so good for me with all the supplements that I take.
If you would like some links to start, you can always visit my show page.
Thank you for listening. This has been Glioblast‑O‑Cast Episode 6.
Theme music for Episode 006: “Beach Bum” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
Here are some links to some naturopath type options. I try to find information that can be backed by science with a study. I also add only one new thing at a time. That way, I can tell if it is helping. I know that it feels like time is running out, but throwing everything all at the same time won’t let you know what is working and what is harming. Once I find something that works for me, I stick with it and then add the next thing.
Always be sure to consult with your doctor before mixing in other things. It’s important to check for interactions with whatever other medication or supplements you are using.
Sites with information in many categories
Treating Glioblastoma: a patient advocacy site http://www.treatingglioblastoma.com/supplements.htm
Examine.com: “Examine.com is an independent and unbiased encyclopedia on supplementation and nutrition . We are not affiliated in any way with any supplement company. Founded in early 2011, we have one goal - to be the unbiased source for supplements and nutrition. We have spent tens of thousands of hours collating the latest scientific research. This site is run by editors who examine primary research. Users are encouraged to submit corrections and any research we may have missed.” https://examine.com/supplements/
Memorial Sloan-Kettering Cancer Center: About Herbs, Botanicals & Other Products
https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs
Information from long-term survivors using a “cocktail” approach
Ben Williams, surviving since 1995 https://virtualtrials.com/williams.cfm
Cheryl Broyles, surviving since 2000
http://www.cherylbroyles-gbm.com/
Specific informational links
Boswellia links:
Boswellia serrata (BS) is an extract of Indian frankincense. This is for swelling instead of dexamethasone or other steroid. It should be listed on the ingredients from the supplement manufacturer as at least 59% boswellic acids, as noted in the study.
Wiley Online Library
Boswellia serrata acts on cerebral edema in patients irradiated for brain tumors. A prospective, randomized, placebo-controlled, double-blind pilot trial. Forty-four patients with primary or secondary malignant cerebral tumors were randomly assigned to radiotherapy plus either BS 4200 mg/day or placebo. http://onlinelibrary.wiley.com/doi/10.1002/cncr.25945/full
Hecht Pharma (Germany)
https://www.hecht-pharma.de/h15-weihrauch-350-mg-kapseln
this was the brand used in the above study
Examine.com https://examine.com/supplements/boswellia-serrata/
Treating Glioblastoma: a patient advocacy site (specific info for Boswellia) http://www.treatingglioblastoma.com/supplements/boswellic_acids.htm
Memorial Sloan-Kettering Cancer Center (link specific for Boswellia) https://www.mskcc.org/cancer-care/integrative-medicine/herbs/boswellia
Turmeric Curcumen:
this could have potential interactions with thinning blood, check dosage and interactions with other medication
Turmeric For Health
This was the protocol I started with, using capsules of curcumin with bioperine.
https://www.turmericforhealth.com/general-info/turmeric-curcumin-dosage-for-cancer-a-scientific-plan
Cancer Research UK
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/can-turmeric-prevent-bowel-cancer
Superfoodly:
Which Curcumin Supplement Has The Best Absorption?
while this is a site that sells supplements, this particular comparison is backed by good resources
https://www.superfoodly.com/best-turmeric-curcumin-supplement/
Glucosamine
http://www.sciencedirect.com/science/article/pii/S0006291X10013616
http://www.anti-agingfirewalls.com/2014/06/09/glucosamine-for-longevity/
Milk Thistle
University of Maryland Medical Center http://www.umm.edu/health/medical/altmed/herb/milk-thistle
Hyperbaric Oxygen
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4487135/
Medical Marijuana
http://medicalmarijuana.co.uk/cannabis-shrinks-aggressive-brain-tumors-mri-evidence-of-3-recent-case-studies/#comments
Rick Simpson Oil (RSO) http://phoenixtears.ca/
General Nutrition
I started Juicing everyday. This site has great recipes that can be searched by health benefits.
https://juicerecipes.com/recipes/
TRANSCRIPT (links to follow)
This is Episode 005 of Glioblast‑O‑Cast: How did I find reliable information about glioblastoma?
Hello, and welcome to Glioblast‑O‑Cast, a podcast about life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I'll answer the question, How did I find reliable information about glioblastoma? In my show notes you'll be able to find a few links to get you started.
At first, when facing a glioblastoma diagnosis most doctors advise to stay away from the internet. They say don't Google; don't look things up. Well, there's a reason for that. Actually, I think there's multiple reasons to not look things up.
First and foremost, this information is really scary. I mean, nearly every study or article I have read begins with the overview of glioblastoma that highlights the average prognosis.
Now the average prognosis seems to vary slightly by resource. I've seen average prognosis with treatment noted at 12 to 14 months or 12 to 16 months, and once I saw the average noted at 18 months. Either way, it's all very short expected survival times, months. They never seem to talk in years. It's always how many months.
I think the doctors don't want their patients to focus on that to become depressed because depression or panic doesn't help treatment. And there are so many unreliable sites without facts to back them up.
But even for the reliable sources, like cancer sites or hospital sites, there's just so much to read. It could take a full‑time job just to slog through it all. It's so easy to become confused between standard or care, new treatment, and various phases of testing and naturopathic supplements.
But in this episode I'm going to talk about how to find good general comprehensive information, and these are my tips.
Even though my doctors cautioned me not to do the internet research, for me it was and is essential to be informed so I can make proper choices for my treatment. But I wanted to be smart about how I went about my research. I came up with some rules for myself.
First, I had to find a way to accept the average prognosis. I had to decide that, okay, the average is somewhere around 14 months, but I plan to fight, to not be a statistic, not resign myself to only 14 months. I know I plan to hang around for a lot longer.
But in doing research, I had to get used to seeing those numbers and just know those scary numbers are not etched in stone. They are not definite.
I also decided that any source of information must be legitimate and trustworthy. For me one big indicator was no ads on the sites pages. These ads to me show that it's possible click bait and promises more than it can deliver.
When looking for information on any potential treatment, I wanted it to be backed by scientific studies, not just anecdotal information or fantastic claims. I need proof.
Big on my list are cancer organizations and teaching hospitals. I have found that with naturopath treatment, my research needs to be especially scrutinizing. I'll go into that more in another episode.
So my overall point with information about glioblastoma treatment is first consider the source. Are they a hospital? A university? A drug company? A non‑profit? A for‑profit?
You need to know where you're getting your information and can you trust them. And the information you find, does it have science to back it up? Are the claims verifiable? Are there scientific papers or articles you can reference when you discuss these treatment options with your doctor?
The biggest thing for me was to educate myself on some not‑so‑easy‑to‑read pieces of information. And that only could happen once I got okay with seeing the bad outlook for glioblastoma over and over and over.
A final bit of advice: Limit how much time you spend per day doing the research. Set aside 20 minutes, a half an hour, an hour, but don't spend the whole day throwing yourself into research. You still have to live day to day to day. So I say be very careful with how much time you spend on your research.
Thank you for listening. This has been Glioblast‑O‑Cast Episode 5.
Theme music for Episode 005: “Buddy” Bensound.com
Some Hospital and Institute websites with comprehensive information
University of Iowa: https://uihc.org/brain-cancer-program
Massachusetts General Hospital: https://brain.mgh.harvard.edu/
UC San Diego Health System: http://neurosurgery.ucsd.edu/glioblastoma/
The University of Maryland Medical Center: http://umm.edu/health/medical
The University of Texas, MD Anderson Cancer Center: www.mdanderson.org/cancer-types/brain-tumor.html
Barrow Brain and Spine: https://www.barrowbrainandspine.com/the-patient-experience/second-opinion/ They have a program for a second opinion without the expense of travel, for a low-cost review of medical files and scans.
Dana Farber Cancer Institute: http://www.dana-farber.org/Health-Library/Ask-the-expert--q---a-on-brain-cancer.aspx
Cancer Treatment Centers of America: www.cancercenter.com
Organizations
American Brain Tumor Association: www.abta.org
The Brain Tumor Alliance (Australia): www.btaa.org.au
Brain Tumor Network: https://braintumornetwork.org/
Cancer Horizons: www.cancerhorizons.com/finanical-help-cancer-patients/
Cure Brain Cancer Foundation (Australia): www.curebraincancer.org.au
End Brain Cancer: http://endbraincancer.org/portfolio-item/glioblastoma-a-patients-guide/
International Brain Tumor Alliance: www.ibta.org
Kanker (The Netherlands): https://www.kanker.nl/bibliotheek/glioom/wat-is/7670-glioom
Other links for support
Greg’s Mission: http://gregsmission.org/ Free guidance from a 13 year glioblastoma survivor.
Phil’s Friends: http://philsfriends.org/ Providing support and hope to those affected by cancer.
The Darren Daulton Foundation: www.darrendaultonfoundation.org committed to providing financial assistance to those who suffer from brain cancer and brain tumors
Tug McGraw Foundation: www.tugmcgraw.org
The mission of the Tug McGraw Foundation is to provide resources and hands-on support, foster understanding, promote awareness, and stimulate research and scientific collaboration to improve quality of life for people with brain-related trauma and tumors.
TRANSCRIPT
This is Episode 004 for Glioblast-O-Cast: What was chemo like?
Hello. Welcome to Glioblast-O-Cast, the podcast about life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I'll talk about the chemo portion of the standard treatment.
And as a little disclaimer, I did not have the best experience with chemo, but my experience is not typical. I don't want to scare anyone that is about to start chemo because for many people it works, and they can tolerate it very easily.
For me the standard treatment for glioblastoma when I had it in April and May of 2016 was surgery to remove as much as possible, for me what was looked like a hundred percent on my MRI. That is currently impossible to remove a hundred percent. It's really a hundred percent of what can be seen.
Along with surgery, about four to six weeks after, there's radiation. Check Episode 3. I talk about that. And at the time same time there's chemo, and that's the topic for this episode.
Many people have a preconceived notion of chemo. The media is very good at depicting chemo but usually as it relates to other cancers such as breast cancer.
I remember my mom's chemo from 25 years ago where she checked into the hospital overnight and received chemo in the form of an IV. They would send her home the next day, but her whole system was destroyed and vulnerable and she would get sick and end up back in this hospital for a week or more.
I didn't want that. My neurologist explained my chemo would be different. Just daily pills with the dosage based on weight. No IV and no overnight hospital stay. Easy, huh?
Well, yes, but with a few words of caution. Some of this is not for dinner conversation, FYI. One possible side effect of chemo can be constipation. I would say imagine being constipated and double or triple that. It's really not fun.
My doctors prescribed different medications to help and prevent constipation. The mild prescription didn't work. So I took the other one and only suffered one instance on day 3 of chemo.
For some of us GBM warriors, constipation is the least of our worries. The big problem I had was how chemo affected by blood. Most patients I corresponded with had an easy time with chemo. But for the unlucky few like me, chemo can have a bad side effect that destroys platelets. That's why there's a weekly blood test to monitor blood counts.
Every week I had my blood tested. Some nurses are better than others at drawing, and an hour after I would meet with my oncologist. At first he would just tell me if things were good or not, but for me, that was not a good enough answer. I wanted to know the exact results. I wanted to understand the whole process.
So when my test results showed a drop in platelets below the normal range I was concerned. Normal platelet results are 150 to 450. And for chemo I was told they like it to be at least over 100.
Before treatment started my platelets were at 330. A week later after starting chemo, they were down to 260. And week 2, down to 251, still in normal ranges. But week 3, it dropped to 88.
My oncologist wasn't concerned. He said it was expected. We would watch what happened the next week. He said there wasn't anything to do to bring it up, but he wasn't concerned.
Then my week 4 blood test happened and it had dropped significantly. I was down to 9. That's below the threshold and it required a platelet transfusion.
For the transfusion I was considered an outpatient, and I would get an IV like I had dreaded. At that point all chemo stopped. And it was my understanding it was supposed to continue once all my levels were back in the acceptable range of a hundred.
My platelet transfusion was pretty quick. It only took a half an hour. But the second it finished, something did not feel right. Even though the nurse said I could leave, I waited a moment to focus. I needed the restroom, and when I looked in the mirror, I saw the problem: Full body hives.
Right away I cried. It was an odd allergic reaction, certainly not typical. So I had to stay longer for a while. They gave me a high dose of antihistamine. After about another half an hour all was almost back to normal and the hives were pretty much gone.
Then I had daily blood tests and the platelets made small jumps, every day even on Saturday. I went up to 28, down to 19, then down to 17. And then it went to 8 and another platelet transfusion, which I didn't look forward to.
This time we started with a preventative dose of antihistamine. Unfortunately, as soon as the transfusion ended, the hives returned, stronger and even more overwhelming. Again, I cried. But the nursing staff was so wonderful and comforting. They kept checking on me and I had more antihistamine, and we waited for the oncologist to show up.
While I waited, I took some really unflattering photos to document the situation. So with my platelet issues continuing and chemo on hold, I continued radiation and kept hoping the platelets would rise.
The whole plan was to continue with the 5/25 Chemo for six months or maybe a year. That's five days of a higher dose and then 25 days off. But my platelets were extremely slow to improve. So much so that by the time they started to show an uptick, it was too late.
My oncologist was on a vacation, and I had to see someone not familiar with my case who broke the news to me, no more chemo. As I had never seen her before, I didn't accept that and waited to discuss it at the next appointment with my oncologist.
Unfortunately, he agreed with her. No more chemo. And since they considered other chemo options would be stronger than the Temodar, I couldn't tolerate any more. That was it. I was stunned and unprepared for that decision.
I left the oncologist's office and wandered the hospital, crying a little and unsure what to do. I didn't want to leave.
Then I got angry. I went to the records desk at the hospital and ordered a full copy of my records so I could be prepared for a second opinion. Then I went back to see the oncologist while I was still in the hospital. I let him know I was really not happy and that he needed to write my boyfriend a note about this new decision for my treatment. I think I scared him.
I decided right then that I was not going to be a patient for the rest of the day. So instead of taking the medical taxi home, I took the bus to the train station. And for the rest of the day I was not a patient.
After that disappointing and difficult experience, I was on watch and wait: Technically, palliative care! We would still monitor with MRIs, but I was off medical treatment. That idea really scared me. But that's when I decided to really pursue alternative options, which is a topic for another episode.
So what did I learn?
I learned I really need to take charge of my own treatment. Even when it's someone's job, I still need to be in control and informed.
I learned that being a patient is only part of my journey. I'm a person first. And as my life up until then was consumed with getting better through medicine, that was just the first try. I would look for other options for improved health.
Thank you for listening. This has been Glioblast-O-Cast Episode 4.
Theme music for Episode 004: “Good Mood Music” Alan Berlin.
TRANSCRIPT
This is Episode 003 of Glioblast-O-Cast. What was radiation like?
Hello, and welcome to Glioblast-O-Cast, a podcast about life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I'll talk about the radiation portion of the standard treatment, and I'll share what I did to lighten its toll and get through it with my radiation shoes.
With glioblastoma, there are not a lot of treatment options. The standard of care today all over the world is surgery to remove the tumor, or as much as possible, chemo in the form of a daily pill ‑‑ that's for another episode ‑‑ and radiation, which is the topic right now.
Radiation's done, at least for me it was, over the course of six weeks, five days a week. This is because the full concentration of radiation in one dose is just too much for the human body to handle. And like anything, radiation has its own risks.
I wasn't too keen on the idea of radiation or chemo, as I had seen my mom go through those treatments 25 years prior for ovarian cancer. I saw how destroyed she was, so much so she never recovered from treatment. I didn't want that for myself.
But the protocols used today are somewhat different and improved. Despite that, I still couldn't get over certain memories of my mom.
When my mom was on treatment, and this was 1989 or 1990, TV sets were big boxes. Lots of people did not have cable and needed an antenna for reception. I remember static on the TV whenever Mom walked into the room. There's probably no connection between Mom's radiation and TV static, but that was my memory and my concern with my treatment.
Would I become radioactive? Would I glow in the dark?
My radiologist said no. I asked.
Well, where's the fun in that? Really, there isn't any fun with radiation treatment. That's why I make my own. It helps me to laugh and keep mostly positive. I think that's been key for my recovery.
For radiation to the brain, you have to stay very still. That's why there is a plastic mask molded to fit precisely to keep you exactly in the position each time. Check my show notes for my goofy radiation selfie photo. When treatment finished, I got to keep the mask.
So at each daily radiation treatment, I was strapped in place. It actually took longer to position me than the actual dose, only a couple minutes five days a week for 30 sessions.
For me, I did have some side effects from the radiation that started in week 3. I started to lose my hair, but only at the entry and exit points of the radiation. My eventual bald spots were two little triangles. Losing hair in clumps and handfuls in the shower or when combing it is not exactly fun. For some, it can be really sad. Others find it to be liberating. I think I was mostly just annoyed. But with my hair tied together in a ponytail or like I wore it for treatment in pig tails, I easily covered up the bald spots.
It was still no fun on the treatment path, though. So I made my own fun. That's my tip from this. Make your own fun. Find something to help you smile and get your mind off the treatment moments.
So how did I find the fun?
In a way it was about the appearance, like the pig tails. Sure, that hair style was practical for me during radiation. But I decided to also make it a little bit of fun. I used neon green hair bands, and it wasn't just pig tails. There were braids. And, of course, I wore my radiation shoes to each appointment.
Okay. There's really no such thing as radiation shoes in cancer treatment. I just called them that because every appointment I wore my gray Nike running shoes with the neon green laces and soles. I'll have photos of that on my show page as well.
A brain tumor and treatment and prognosis are certainly not fun. So I made myself smile. I made myself laugh.
I think about baseball players that wear the same socks over and over once they start winning... or sports fans who wear their lucky jersey to a game hoping it's going to ensure a win.That's why I kind of had a little uniform for myself going through treatment, my radiation shoes.
Thank you for listening. This has been Glioblast-O-Cast Episode 3.
Theme music for Episode 003: “Feelin’ Good” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
TRANSCRIPT
This is Episode 002 of Glioblast-O-Cast. What is scanxiety and what do I do about it?
Hello and welcome to Glioblast-O-Cast, the podcast about life beyond glioblastoma. I’m your host, Meg Turecek.
In this episode, I answer the question, what is scanxiety. And I’ll share my tactics in surviving and getting beyond the scanxiety.
What is scanxiety?
Simply put, it’s the gnawing feeling of worry leading up to an MRI appointment.
Depending on your healthcare system, I have learned that other GBM patients have regular MRI scans at either 2 month, 3 month or 6 month intervals to monitor the situation inside the brain.
Including my most recent MRI, I have had a total of 12 scans since this journey started.
Just after finishing radiation and chemo, I had a questionable scan and it appeared that maybe the glioblastoma had returned. So instead of every 3 months or 12 weeks, I had a scan every 6 weeks for 5 scan cycles.
It was certainly a scary and worrisome time. But I was fortunate to be in a healthcare system where I had my MRI appointment and then met with my neurologist only an hour later for the results on the same day.
But the days leading up to the scan are certainly overshadowed with worry and playing out scenario outcomes in my head. Because with a terminal illness, I think it’s natural to expect the bad news rather than good.
A recurrence might not have obvious symptoms. Other than my initial seizure, I really didn’t have symptoms to pinpoint a brain tumor to start. So a repeat tumor might not affect me right away.
That’s why we monitor with regular MRI scans. And those are scans are with contrast. That means halfway through the MRI session, the technicians roll you out of the tube and inject contrast dye, slide you back in the tube, and scan some more.
Some people are afraid of the MRI as it is very tight in the machine and can trigger claustrophobia for some.
My MRIs have a mirror system so I can look out the tube and see the technicians. They also give me a button to press if I am having an issue and need to come out. They give me ear plugs as the MRI machine is quite loud. Along with the ear plugs, they can play music.
But I prefer not to have any music. And I hope that all the buzzing of the machine puts me in a near trance-like situation for a little nap. It’s pretty painless.
But even with the past few scans being good and showing shrinkage, I still have a bit of scanxiety each time.
So here’s my little trick to make the scanxiety less consuming and overwhelming.
I change my focus.
I get myself a present for just getting in the MRI tube, not for the results.Instead of dreading scan day and thinking all those negative thoughts and worries, I think about my little reward.
And I try to find unique gifts for myself that are special and not something every day. I used my MRIs to justify getting my podcast equipment, getting a special medic alert bracelet, and a unique pen made from the old stadium seats at Wrigley Field.
I tell others it could be a night out at the movies or a favorite restaurant. Just something to chase away the scanxiety.
Thank you for listening. This has been Glioblast-O-Cast Episode 2.
Theme music for Episode 002: “Ukulele Happy Music” Alan Berlin.
TRANSCRIPT
This is Episode 001 of Glioblast-O-Cast. How did I know I had a brain tumor?
Hello. Welcome to Glioblast-O-Cast, the podcast about life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I am going to start at the beginning and tell my story of how did I know I had a brain tumor. And after that, I'll share one thing that I learned from this experience.
So to start at the beginning, how did I know I had a brain tumor.
It was 2015, Christmas Eve morning about 3:00 a.m. I was woken up by strangers in the bedroom telling me to get dressed and come downstairs. So, of course, the only thing I was thinking about was do I need to make coffee? We have guests, so I probably have to make some coffee.
Well, it turned out we didn't actually have guests, but it was the paramedics from the ambulance my boyfriend called because I had had a seizure in my sleep. All they could tell me is it seemed I had a seizure and I needed to have more than one for it to be epilepsy and did I want go to the emergency room. I just wanted to sleep, so we didn't go to the hospital.
Celebrated the holidays, and I decided I would call the family doctor and see her at the earliest possible appointment, which I did. And she told me the exact same thing that the paramedics did, you need to have more than one seizure for it to be epilepsy, which was scarring me, I can tell you. I didn't remember the seizure, but I'm so thankful that my boyfriend decided to call for an ambulance.
So when I saw the regular doctor and she said the same thing, she said I can wait and see if I have another seizure, which it was possible that maybe I wouldn't and it was a one‑time thing. But I was really, really curious. So I said I need to find out what's going on.
It was almost a month after my seizure, I had an appointment with a neurologist. When I met her, she said the same thing that my doctor said, which was the same thing that the paramedics said, you need more than one seizure to be epilepsy.
I told the neurologist, I still want to know what happened. So she decided to order an MRI.
I had the MRI. Luckily for me she believed me and listened to me, and that was really, really important. Because when I got the results for the MRI, which was the day before my 49th birthday, she told me I had a lesion on my brain. Didn't really say brain tumor, but she asked if I had been anywhere where I could have gotten some kind of a parasite.
So that was my thinking. I was really kind of scared about that. Because nobody wants to have bugs growing in your head. So it was a whirlwind. Immediately I needed a mammogram in case it was breast cancer that metastasized to my brain. This scared me because my mother had breast cancer, and she had died from ovarian cancer.
My boyfriend was away at work at the time three hours away. He was not staying at home. When he called to check on me to see what my appointment had said, I told him, it's not good. It's just not good. He said, you don't have to say anything more. I'll be there. And he was there for the night. He had to get up at the crack of down the next morning and go right back to his work. And then he came back again that Saturday night for my birthday. We tried to celebrate my birthday at the pub. Of course, there was no drinking for me because I was on seizure medication.
The following Monday I had a CT scan. We met with the neurosurgeon, and he gave me basically three options. One was we could wait and see because we could not tell what it was because it was small. He could do a biopsy. But then a biopsy meant cutting through good brain tissue or it also meant they would have to go in again to do an actual surgery.
We decided to take the option he wanted us to take, which was full surgery. Just take the thing out of my head. My craniotomy was scheduled for the 18th of February. We had an uncomfortable conversation with the anesthesiologist, who basically told me if we had the operation I would die from it because of the positioning that I needed to be in. My doctor was going in through the back of my skull, so I had to be seated for the whole operation. Thankfully for me I was unconscious for the whole thing.
So the night before surgery, the anesthesiologist gave me the talk: You're certainly going to die from this operation. That was a scary thing.
So then when I was waking up from surgery, there was a complication, which happens. I had a punctured lung. I'm still unsure as to how that happened, but as I was coming out of the anesthesia, they couldn't give me any medication for the pain when they were putting in the chest tube. They basically told me, don't move. We have to put a tube in. Stay still. I can tell you I remember that.
So with a punctured lung, I ended up staying in the hospital for five days. Went home and waited for the pathology to come through and waited for the surgeon to be available.
A month after I was told I had a lesion on my brain I got the diagnosis that confirmed it was a glioblastoma. Immediately, I knew that was the worst thing because I had already done some research and picked out an ugly oligodendroglioma because those have a much better survival rate. So, of course, that's the brain tumor I picked out, and it was not the brain tumor I got. I got the glioblastoma.
To wrap this up, I would say that one of the most important things I learned was trust your gut. If you feel something is truly wrong, you really have to be your own advocate. You have to be the one in charge of your health.
You go to doctors for their expertise and their treatment. Ultimately, it's you making your own decisions. I am so grateful and thankful that when I questioned my doctors and said I needed to know what was going on that they believed me and they scheduled the tests and we found out. And I'm here today.
Thank you for listening. This has been Glioblast-O-Cast Episode 1.
Theme music for Episode 001: "Vivacity" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/