Oct 15, 2017
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.
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.