March 1, 2018

My update is longggg overdue. My most recent MRI was in the middle of January. All clear again!  I won’t have to worry about that again until early April. I had a nice break from wearing my device over the holidays.  We spent Christmas week in Hawaii (kids and grandkids with us) and it was particularly nice to enjoy the fine weather with my head bare.What a delightful vacation we had!

When I last posted, I believe we were anticipating attending an Optune event in Hollywood.  It was a lot of fun.  It was at the home of Bill Prady, co-creator of The Big Bang Theory.  All the guests were from the TV industry; producers, writers, actors, etc. There were several people who seemed interested in writing Optune into a script in the future, which would go a long way to getting more exposure for the device, and for GBM tumors in general.

BT and I participated in an Open House for Optune in Santa Ana last Monday night, and will be going to San Diego the weekend of March 17th to take part in a presentation to a conference of neuroscience nurses.  So Novocure, the makers of Optune, have been keeping us busy.  We will participate in a 3-day training event with them at the end of March, to better prepare ourselves for future events, and to become official “Ambassadors” for the company, making ourselves available to take personal phone calls from new users of the device to share our experience.  Who knew being retired would be so busy?!

As a lot of you know, my 88-year old mother has lived next door to us since her return from Sweden 13 years ago.  The time has come when she needs “closer” care.  So my siblings, along with me and BT, have been working the last several months investigating best possible solutions, while trying to balance her needs, her wishes, and finances. We wanted to let it be her choice in the final decision.  Ultimately, she chose the very gracious offer from my younger sister, Kay, to come live with her and Sal in the San Pedro area.(And just a stone’s throw away from my sister, Lisa, in Rancho Palos Verdes.)  It is a major upheaval for Kay and Sal, as they have had to move to a larger home (actually moved this week!) but it looks like it will be a really good situation for everyone, once they are all finally settled.  Lisa has been tirelessly working with Mom to determine which of her belongings she wants to take with her to her new home, and which things she is ready to part with.  There have been some highs and lows in this whole process, but we are confident that it was none to soon to make these major changes on her behalf.

Speaking of major changes, we got really good news on Christmas morning!  Megan and Garrett are expecting in early September!  So of course we are really excited about that. We just celebrated Cole and Reston turning 6 and 4, so it’s time for a new baby! (Or, in the words of 4-year old Res, a new “babby”!) (still struggling with his long vowel sounds!)  😉

Another major change for our family; Juliet has earned her RN, and has moved to Utah this week to start a new job in the maternity section of the U of Utah Medical Center in Salt Lake next Monday!  She could not have manifested a more perfect job for herself!  She will be assigned to a new unit where they are just starting “rooming-in” for babies born with drug addictions.  This is the very topic that Juliet did her Research Project on, and she has a very compassionate heart for these babies and their mothers.  So we are very excited for her.

We remain grateful for all of you who keep us in your thoughts and prayers, and we hope for all of you that your burdens are light and your joys are bountiful.

Love,  Marcia & BT

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October 19, 2017

Another good report from my MRI and lab work last week!  Dr. Carrillo asked if I wanted to stretch it out to every 4 months when I hit the 3-year mark in February. (Boy!  I have really exceeded my expiration date!!!)  😊  But I don’t think I’m ready to wait 4 months between MRI’s.  I know how aggressive a glioblastoma can be when it recurs and I just don’t want to risk it.

We have been doing very well, and got some more traveling in.  Went on an Alaskan Cruise (our 2nd time) with sister Lisa and Gary, and really enjoyed ourselves.  You can never get TOO much glacier viewing!  😯 (or TOO much eating!!) LOL!

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We expect to be sticking pretty close to home now until we go to Phoenix early in December for Juliet’s graduation from her nursing program; with the exception of one short overnight trip to Burbank on Nov. 5th to do more PR work for Novocure, the makers of my Optune device.  We’re always happy to share our story about GBM and Optune.  At this point, we are unclear of the format of this event, but the preliminary information we were given was ” it would be at the home of a TV producer attended by about 50-75 guests from the entertainment industry. ”  That sounds like it is up to our standards . . . . . . . . . . . . . . . . . . . .LOL!

We’ve been having a lot of fun with our kids and the grandsons, and we are so grateful that I have been able to stick around for this phase of our life. 🙏

And, just in case you aren’t aware, let me be the first to tell you – it’s only 9 weeks until Christmas!
Much love,
Marcia and BT
P.S.  I tried to change some pictures around on here and made a real mess for a while.  I hope I have straightened it out, but won’t really know until I push the “publish” button.
Sorry if I have totally screwed it up.  We shall see!  ( I have GOT to stop pretending that I still understand technology!  That ship has sailed.)  😏

September 4, 2017

Dear Friends,

No new developments in my condition to report (Hallelujah!). I am only updating to ease the minds of anyone who may be concerned due to not hearing from me for a while.  NOT to worry!  I’m doing well and the only treatment I am taking is the Optune device and plenty of leisure time.  My July MRI was excellent again and I won’t be having my next MRI until October.

We enjoyed our trip to New York for a Novocure photo-shoot and tried out flying while using Optune for the first time.  It was absolutely fine.  No hiccups with security at all, although we were well prepared for an assortment of possible scenarios.  NYC is always crazy, but the Novocure people always treat us royally, and we really enjoyed meeting 4 other patients and their caregivers.  You can see some results of the photo-shoot by visiting the website at optune.com, where I am posing with two of my new friends.  If you click on the blue bar on the lower left (“See the Proof: 5 year study”), it will take you to a page with a head shot of both me and BT.  Also, if you click the Facebook icon it will take you to the Optune Facebook page where you will see a photo of all 5 Optune patients that took part in the Photo-shoot.

BT and I are always happy to represent Novocure whenever and however we can.  The clinical trial results have really been remarkable considering the bleak prognosis for GBMs.  30 months ago, when I was diagnosed, the expected survival time was about 15 months. In clinical trials with the addition of Optune to the standard chemotherapy, nearly HALF of patients are alive at 2 years.(With NO additional side effects!)  (I’m curious to see if John McCain uses Optune.) And now they are conducting trials for other types of cancers.  So if you catch me whining about having to carry it around, or complaining about my head itching, I give you permission to wipe that pity party right off of my face!  My outcome to date has far exceeded my expectations.  And Life is GOOD.

In early August we spent a week up in Morro Bay.  This is the 3rd year that we have rented the same house.  We really enjoy it.  There’s plenty of room for the kids and grandkids. I was really hoping for some nice “beach weather” this year. ( Unfortunately, it was a little too cool and windy for my taste, but after being back in Sun City for the last month, you’d have to be some kind of ungrateful fool to complain about a week of cool, windy weather!  😡)  Cole And Reston enjoy the beach in ANY kind of weather and their parents are really good sports, so it was a successful vacation for everyone.  😃  Ben couldn’t make it this year, but Juliet brought a friend from Mesa with her, so we had a full house and a good time.  Those little boys are something else!  I think they were put on this planet primarily to entertain us and bring us joy. Cole will officially be a “Kindergartener” next week.  The way I understand it, Cole and Res will continue to go to Art class on Friday, Cole will go to school on Tuesdays, and Megan will Home-Teach the rest of the week. It is so much fun to be in the position of grandparents, where you can just sit back and observe the way their little minds soak up knowledge like little sponges.

We are going to have another opportunity to escape this unrelenting Sun City heat this summer.  This is about the time of year that we start talking about living out our “Golden Years” in a slightly cooler climate.  But there are so many complications to considering a move.  This is where we have family, GRANDKIDS, wonderful neighbors, my CRAFT ROOM, and, very importantly, my medical services.  So we are going to do the next best thing.  We are taking an Alaskan Cruise at the end of September.  For some reason, thinking about looking at glaciers sounds really good right now!  (We’ve been once before and really enjoyed it. . . . and the bonus is:  We won’t be following daily politics while we are at Sea!)  By the time we get home, we will be into October, with the promise of cooler weather within reach.

That’s all for now.  I will plan to update in October, after my next MRI (fingers crossed like always!)  ☺️

Marcia and BT

June 17, 2017

During the middle of April, we had our every  2-month MRI, bloodwork, and Doctor visit.  For some reason, it has taken me months to post the report.

This time I didn’t mind the MRI at all.  I have been taking ativan 45 minutes before the MRI and this time it REALLY relaxed me.  I was so relaxed that I could have fallen asleep if the banging, beeping, buzzing, and assorted other noises hadn’t been so loud.  Maybe I am finally getting used to it.  And we couldn’t have asked for better results – another clear scan!  Yeah!  Also, Dr. Bota said my bloodwork was “perfect”.  Not a single item was out of range this time.  So my doctor visits ( and pre-visit tests) have been stretched out to once every THREE months now.  That will be nice not to have to devote every eighth week to Glioblastoma business!

During May, BT and I took a road trip to Santa Fe, New Mexico.  Neither of us have ever been to New Mexico and with my recent interest in jewelry-making, I wanted to see some of the Native American craft works there. We were surprised at how lovely New Mexico was.  I had it in my mind that NM would be like Arizona desert on steroids.  (Too much “Breaking Bad” binge-watching?)  Going through Albuquerque, I was able to stop in to Rio Grande Jewelry Supplies, from whom I purchase my copper wire and assorted findings.  (Saved myself the shipping costs and also picked up a couple hefty catalogs!  It was kinda like being in a candy store.)  Such fun. 🎉  And, if you have ever been to Santa Fe, I don’t EVEN have to tell you how lovely and artsy it is.  We really enjoyed learning about the early history of New Mexico in the history museum there.  Our hotel was very near the Plaza and designed and decorated in Old Pueblo style.  (Totally NOT functional for a hotel room, but “ambience” counts for a lot when you are on vacation!)  😎  I just wish I had the stamina of my pre-tumor days so we could have done more walking.

One of the best parts of the trip was that I went without my device the entire time!  My doctor told me it was time to give my scalp a break after wearing it for 21 months.  It was wonderful.   I felt so free for 8 days! And it really was a good thing for my scalp – I had some sore spots that got to heal without being subjected to adhesive and heat and the gel on the electrodes.  I was a little concerned that I wouldn’t want to put them back on when we got home.  But I was ready to be shaved again and reapply the arrays.  Despite the slight inconvenience, having them on my head gives me the comfort of knowing I am receiving treatment.

We have a busy week ahead of us.  The good people at Novocure are flying us out to New York City on Tuesday morning, along with 4 other Optune patients and their caregivers for a photo shoot.  Apparently they just can’t get enough of my bald head and chubby cheeks! This will be the first time I  have flown with my equipment. Wish me luck getting through security. Thank goodness I take my Personal Warrior with me everywhere I go!

The following week, we are re-carpeting some portions of the house. In my craft room we are pulling up the carpet and installing laminate flooring. I’m so excited – with the addition of some Ikea drawers and tabletops, my sister has helped me design a “high-functioning” workspace in my craft room. (Anyway, it looks real good on paper!)  But it means I’m out of commission for a few weeks during the transition.

We had a great day today.  Along with Meg, Garrett, and the little boys, we drove down to Poway today to visit my dad for Father’s Day weekend.  Ben met us there also.  While we were there I got to reconnect with my cousin Joyce who I have probably only seen two or three times in my life.  She was visiting from Tennessee with her lovely daughter and two gorgeous, delightful grandchildren. So Megan and Ben got to meet a 2nd cousin, and Cole and Reston got to play with their new-found 3rd cousins.  The time we spent with them was priceless.

In mid-July I will be having my next MRI.  This will be the first time that I have gone 3 months between scans.  Hopefully it will be another clear scan and I will get comfortable with going 3 months between scans. Meanwhile, I am certainly feeling good. My memory problems seem to be getting a little worse, but that’s more of a problem for BT than for me.  LOL!  Life is good! 😀

Love,

Marcia

 

February 28, 2017

My blog post is a little late this month – February is a crazy busy time of year for us, as it seems the majority of family members have their birthdays in February, including both grandsons. And I finally decided it was time to trade in my Flip phone for a Smart phone.  Needless to say, there was some time involved in that learning adventure!

The good news is – My MRI was clear again and my bloodwork continues to improve!  WooHoo!!  And there is NO bad news!  We noted my 2-year cancerversary date on the 18th of February and I have certainly exceeded my expiration date!  🎉  Thanks be to medical interventions, the love of friends and family, and the grace of God.

The Optune has become easier and easier for me to incorporate into daily life, as I seem to have a greater capacity for the length of time I can wear it on my back before my back starts to feel fatigued. That helps a lot, because when I am “self-contained” I feel so free to move about.  Otherwise, I am carrying the device in one hand or over my shoulder and setting it down and forgetting to pick it up when I start to walk away.

The Novocure people asked us to attend another company function – their annual Sales and Marketing meeting in Long Beach at the end of January. They put us up in a lovely hotel and BT and I really enjoyed talking to their Sales and Marketing people and trying to demonstrate for them the realities of the Optune use for the patient and the caregiver.

When we had our February doctor appointment at UCI, I was telling Dr. Carrillo that the only problem I was having with the Optune was the itching and minor scalp irritation.  He suggested that because I have been on it now for 18 months, and have maintained a high “compliance” rate (percentage of time that I am hooked up and receiving treatment), I should occasionally be able to take a week off. Music to my ears!!  I have decided that I will do that when we travel.  Although it is “doable” to remain on-treatment when we travel, it would be SO much easier if we didn’t have to pack and transport all the equipment and supplies and I could be free from wearing it.  We are planning a road trip to Albuquerque and Santa Fe in May, so I am already planning to go without Optune for that trip.  You have no idea how that has increased my anticipation of the trip!  😌  Also, we will  be going up to Morro Bay again this summer with the family and I will do the same for that trip!

Fortunately, it was an “array change” day on Sunday when Cole and Reston were having a birthday party (turned 5 and 3!), so I was on a 4-hour break and got to go without my equipment! LOTS of fun!! (And I had LOTS of fun making the cupcakes – hopefully they show at the top of this page.)

I’m still having some physical therapy to try to strengthen my back, in an effort to increase the length of time I can carry the Optune in the backpack. Aside from that, I am not exercising as much as I should, but I’m pretty sure I am in good company!

I stopped in at the new school district education center last week, and got to visit briefly with a few of my Besties!  Really made my day!!  And we spent President’s Day weekend in Palm Springs with Lisa and Gary.  Went to the movies and to the casinos.  Had a great time!

I’m afraid my blog posts are going to become more and more boring, as I will have nothing to report. At least nothing medical to report.😊  That’s my goal.  But every two months when my I have my MRI’s and they are still CLEAR, I just want to SHOUT it on here!

Life is SO GOOD!

Love,

Marcia

 

 

Dec. 15,2016

Howdy, Folks – this is going to  be a long one.

Had my bimonthly visit to UC Irvine yesterday – MRI still looks good.  Woo-hoo!  Also got the results of the EEG I had on my birthday to test for seizure activity.  Same results as last time – no seizure activity detected.  However, this time the test was able to capture an abnormality – a “slow” response on the right side of my brain.  The doctor explained that this is not at all unusual for a brain tumor patient.  And it actually makes me feel somewhat “validated”, in light of all those occasions of “forgetfulness”.  LOL.  Really makes me want one of those T-shirts that say, “I had brain surgery – What’s YOUR excuse?”  🙂

It’s been a busy couple of months since my last update.  Within hours of my last post, Novocure posted my video journey on their website.  They have since updated it with some photos at the end, showing me using the new smaller device.  For any of you interested in seeing it, go to optune.com/resources/videos and scroll down to:  “meet Marcia”.

The day after the video was posted, we were asked to participate in an Optune symposium at the SNO (Society for Neuro Oncology) Conference in Scottsdale, AZ on November 18th.

Novocure would be just one of many vendors at the annual conference doctors attend to get the latest scoop on neuro-oncology research and treatment.

Our NO, Dr. Bota, would be presenting the latest clinical trial results for Novocure (the makers of Optune), and they wanted to highlight my case, along with that of another patient and her caregiver from Washington. They picked up the tab for our transportation, lodging and meals – and we stayed in a lovely resort hotel.  If I have managed to manipulate my graphics correctly, the picture at the top of this page should show me and BT on the stage, during a Q&A with Dr. Bota.  I’m guessing our audience was a couple hundred doctors.  Along with the longer-term data results they were presenting, they were wanting doctors to actually see and hear from patients and their caregivers.

It was a really fun trip for us.  We enjoyed meeting the other patient, Jayne, and her husband, Carl. It was so cool to hang out with another couple who could totally identify with not only our brain tumor journey – but also the Optune lifestyle that we now live.  And we already knew from our experience with the making of the video that all of the Novocure personnel were warm, friendly, compassionate and talented people – but we got to meet a lot more of them.  We had the ears of the top people in the organization, and they truly wanted our input and design ideas.

We were invited to an awards dinner where Fran Drescher “The Nanny” was the keynote speaker.  After having uterine cancer 16 years ago, Fran made a full recovery and started advocating for early detection and consumer education.  She was very entertaining, and, yes, that really is her NATURAL voice.  🙂  Fran was very friendly and gracious and came to our table to speak to us.  She spent a good twenty minutes with me, BT, Jayne, and Carl.

And, if technology is once again on MY side, I will be posting a picture here.  img_3093

Later in the evening, I was introduced to yet another Novocure employee who asked if I would be willing to give a telephone interview to the BBC!  She didn’t have all the details but asked if she could put a reporter in touch with us. Sure . . why not?!

Within 3 days, BT and I were on a conference call with Novocure’s media/legal dep’t.s for an hour (offering guidelines for speaking with the media), followed by a half-hour interview call from “Andy” in the UK.

So here’s the deal as I understand it.  One of the BBC channels is preparing a pilot for a daytime, doctor-hosted show, called “2nd Opinion” where they will take a look and poke fun at the latest health headlines.  Their goal is to be able to investigate the claim to the point of either debunking  the claim, or validating that it IS true science. (I Googled the show and I see that the category is described as “Comedy/Science”.  I sure hope I end up on the right side of that forward slash!!)  Andy had been in touch with Novocure to understand the science behind it and he asked if he could to speak with an actual user of the device. He couldn’t find a Brit to talk to because the national healthcare in the UK won’t pay for Optune and very few people there have any kind of private insurance.  So, out of 3000 users in the US, somehow was the logical choice.  (????)  Go figure!  (By the way, I was simultaneously baking pumpkin pies while giving him my telephone interview – the Brits have no appreciation for Thanksgiving apparently.)   The pilot is slated to air in January I believe. Of course, in retrospect, I’m a little leery of the whole deal – especially after reading that this is to be a comedy show.  I know I didn’t say anything that the FDA wouldn’t like (I had good training) but I have no control over how I may have been quoted. Fortunately, I will probably never have the opportunity to see the show.  🙂

So that’s pretty much how we have been staying busy.  And now Christmas is here!  Wow! That came quickly!

BT and I are both doing well and we wish you all good health and good spirits.  I can be pretty certain I won’t get Christmas cards sent.  But there is still a chance I might send out my usual New Year’s Card after all the tinsel and fairy dust settles.

Love to all –

Marcia and BT