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

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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

 

 

 

 

 

October 24 , 2016

4 PM UPDATE:  My video has been posted on the website this afternoon.  (I wasn’t making it  up after all!)  You can view it at Optune.com.  Go to the Patient Journey videos page.

Greetings!  This was my week for bloodwork, MRI, and visit to UCI.  Once again Dr. Carrillo was pleased to see that my MRI and blood results were all still very good.  Hallelujah!  He reduced my anti-seizure medication some more and wants me to have another EEG in 3 weeks to confirm that there is no seizure-like activity in my brain at this dosage.  I am confidant that we will learn that there is not. Then I can probably reduce it some more.

I had cataract surgery on my right eye a couple weeks ago. For those of you who may not know, it is a really unique experience and not at all uncomfortable. Boy! I didn’t realize what a difference it would make.  I felt like I had finally had my glasses cleaned! Now I am really looking forward to my eye appointment on Friday for a vision check and to order new glasses.  Distance has never been a problem for me and my current glasses work pretty well for my near vision, but right now my computer vision is all wonky and driving me nuts.

I am still greatly appreciative of my new Optune device.  It has been much easier to get out and about.  We spent a weekend in Orange County a couple weeks ago.  Visited with our good friends,Jim and Gail, and attended the Carole King musical “Beautiful”.  It was spectacular!  Then, last weekend, we were in Laughlin with Lisa and Gary and saw Neil Sedaka in concert. He gives a fabulous show, but we were packed in like sardines, which gave us plenty of laughs. (The general age, size, and agility of the Laughlin clientele is not very conducive to “packing in”). For some additional humor, we were able to take in a comedy show.  All in all, it was a pretty funny weekend. On the way home, BT and I decided to take a walk on the wild side, so we stopped to eat at the “Ludlow Cafe”, an experience that was equally funny and terrifying. We’ve been traveling to Laughlin for about 25 years and this is the first time we have stopped there.  Hopefully, it will also be the last.  LOL! (But, to be honest, I was wearing my shirt that says “Every day is a new adventure . . .”).

Speaking of adventures (how I LOVE a good segue!), I am scheduled for a routine colonoscopy on Tuesday at 8 AM (tomorrow morning). I have to drink a half gallon of my “solution” – (the word ‘solution’ here is a euphanism for ‘gross-tasting alleged lemon-flavored drink that starts World War III in your gut’) tonight.  Then 4 hours before my check-in time in the morning , I commence drinking the final 1/2 gallon.  If you do the math, that means that I start drinking at 4 AM tomorrow morning. Really??? I think that is particularly cruel and I told them so.  They didn’t care.  Apparently they have heard that before.

The only good thing about having a colonoscopy is that it gives me a lot of potentially good material for my stand-up routine.  But I don’t expect to be performing anytime soon.

Speaking of performing (and yet ANOTHER good segue!) the video that Novocure made of me demonstrating my use of the Optune device should be posted soon.  They asked me to send some photographs demonstrating my current use of the smaller new device that they can incorporate into the video.  So that is now taken care of.

In case you can’t tell, I am feeling really good and my only complaints are the kind that come with the privilege of aging, and really have nothing to do with the disease.  I have finished my physical therapy that was addressing my balance issues.  My physical therapist says my balance is good, but she is seeing me as a 60-something year old woman with a brain tumor.  That’s not who I really am, so I see it differently. I know my balance isn’t quite right, but I also know that it may never be perfect. I think that ship has sailed. But I am so grateful that I have come such a long way in my rehabilitation.  I was particularly happy about that the other day as I was getting myself up and out of the bathtub unassisted.  Let’s be clear – it wasn’t pretty – but it was doable!

I have resumed my “clay play” with a vengeance. Although I was making Nativity figures prior to my tumor onset, my focus now is bead making and jewelry making. I am applying myself with a passion that was previously reserved only for Pink and White Animal Cookies!  🙂  I only stop long enough to attend appointments, run errands, endure political broadcasts, eat, sleep, and babysit.

Speaking of babysitting (another smooth segue), we had the little boys for a sleepover this weekend.  It was fun for all, including Mommy and Daddy who attended an incredibly scenic wedding at a winery in Temecula. When we have the boys stay with us, BT still has to do the lion’s share of the work: cooking, bathing, and jumping up in the middle of the night.  But I get to do most of the story-reading, dressing, and tucking in. I look forward to being free from my device at some point in the future (next summer?) so I can be more hands-on with Cole and Reston (and any other additional little Blessings that may come our way).  🙂

Thank you Dear Ones for supporting us up to this point and beyond.  Life is Good!

Love, Marcia

 

 

 

 

August 24,2016

Hoo-ray!  To quote Dr. Bota today, my MRI looked “Perfect.”  What a relief. It has been two months since my last MRI and doctor appointment. Now I will be waiting another two months for my next scan. And so it goes for another 12 months, as long as my scans continue to be clear. This is great news!

I learned something new from Dr. Bota today.  I have been seeing Dr. Carrillo and Dr. Bota at UCI interchangeably, based on who is available.  Recently, I have mostly been seeing Dr. Carrillo.  I like them both very much.  But you sometimes get a little different perspective, depending on the doctor.  From our appointments with Dr. Carrillo, we had come away with the idea that I would continue using the Optune device indefinitely, as long as it continues to be effective (measured by clear MRI’s).  However, today Dr. Bota gave us some really exciting news.  She says that at the 2 year mark (of using the device), assuming all scans have been good at 2-month intervals, I will get a MONTH OFF from wearing the device.Then we will get an MRI at the end of the month.  If the scan is still clear, I will get to leave the device OFF and continue monitoring on a monthly basis!  This was an entirely new concept for me – that I could have my  head free of electrodes and start growing my hair back in as little as a year from now. DOUBLE WOOHOO!!!!  Of course, at the first sign of new tumor growth , we will have to decide whether to go back to using Optune or choose another of the ever -increasing  GBM treatments.  I just can’t tell you how excited I am!  As 4-year old Cole has been known to say, ” I did NOT see that coming!”  LOL!

Meanwhile, I continue to feel really good and have had the luxury of spending my time vacationing.  We spent last week up in Morro Bay with Megan, Garrett, and the boys.  Juliet was able to fly in from Mesa and spend a few days.  Unfortunately, Ben wasn’t able to come.  (Somebody in this family has to work!)  We thought it would be nice to get a respite from the Sun City heat.  Well, be careful what you wish for!  🙂  It was actually cold there, and we never got a beach day until our very last day! I packed totally wrong . . . should have brought jeans and long sleeves instead of shorts.  But we had a  nice time anyway.  Megan’s family braved the cool weather to play in the sand several days.  And BT and Juliet and I took trips to San Luis Obispo and Cambria.  And of course we watched a lot of the Olympics.

We leave on vacation again in two days.  This time we are going up to Lake Tahoe with Lisa and Gary.  The weather there is supposed to be in the low 80’s.  So I’m just going to pack the same clothes I packed for Morro Bay, and it should be right this time!

My new smaller Optune has made a huge difference in my activity level – because it is just so much easier to get around with the lighter load.  I managed to tolerate the old clunky one for a whole year – one more year of using this streamlined device should go by in the blink of an eye!  Wish me luck.

Love to all,

Marcia