Sandy Beardsley
Living with a Brain Tumor
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05/22/06
Living with a Brain Tumor
Filed under: General
Posted by: Dan @ 9:18 am

Yes, Living with a Brain Tumor.

As we said in yesterday’s post, we will use this post, our last one for a few days as we drive home starting on Tuesday, to explain Sandy’s condition, prognosis and the next phase of her treatment in more detail. We also posted a lot of photos yesterday if you haven’t seen them.

It is important that everyone understands that behind her glowing smile in those photos there is a fight for life going on… and we don’t want to waste energy repeating in person where she’s at and what’s to come. And also to make it as clear as possible what’s happening. So please consider this information sharing as an effort to make things as easy as possible for Sandy and myself. It can be exhausting and draining to answer the same questions and tell the story over and over - and just to know that it’s not understood what is going on. To most of you who have been reading this blog, and reading between the lines sometimes, the words below will be nothing surprising. And though they are profoundly and painfully difficult for me to write, I am fighting back the worst of fears and trying to hold on to life… and hope.

So here’s how Sandy is feeling, what we know and what is ahead for the near future, as near as we know…

Since her surgery in October ‘05, Sandy’s brain tumor has been diagnosed as a Glioblastoma Multiforme Grade 4. This is one of the worst and fastest growing types of brain cancer. The statistics show that it is very rare for people with GBM tumors to survive very long - sometimes people die within a month, sometimes a year, sometimes - and rarer - do they live longer. Of course, we know these are just numbers, but they are real numbers. We can’t ignore them. But we’re praying hard and counting on it that she will be one of the exceptions to the statistics.

We met with her neuro-oncologist on Friday and he showed us her post-operation MRI images on a computer screen. The new surgery site and the surgery site from October (about 1-1/2-inches apart) are plainly visible - each one a 1/2 to 1-inch diameter area of her brain that is not there. In between and spreading beyond these two surgery sites he pointed out an area of lighter colored wispy lines (which they had also seen on her pre-operation MRI), indicating an area of new tumor growth. Her neurosurgeon determined after seeing the MRI the day of her surgery that it was too risky of an area to operate on - it would have definitely caused some vision loss and other deficits. So they stayed with the plan to remove the active tumor area that was more safely operable. What is clear from the comparison of the MRI’s is that the cancer is very aggressive and growing quickly. And it also apparently now unaffected (though maybe slowed down) by the chemotherapy she has been on since October.

Due to the location and spreading nature of the tumor area, any more surgery is too risky and would affect her quality of life. Cyberknife radiation surgery is also not an option, as we had once hoped. Apparently what shows up on an MRI is not all of the active tumor -there is an unseen active area as well - the proverbial “tip of the iceberg.” About a quarter of her brain would have to be radiated to affect the tumor, a very risky and life-threatening option.

So her neuro-oncologist is switching her to a new phase of treatment. She will be taking two drugs - one is a chemo drug called Cytoxan and the other is a cell-growth inhibitor called Tarceva. The drugs are in pill form and she will likely be on an every other week schedule of taking them. In two months from starting the chemotherapy on June 1 Sandy will have an MRI on August 1 to see how well these drugs are working. Because Sandy is doing well and is in otherwise good health, her oncologist does not want to damage her health with the more toxic and ravaging chemo drugs at this point. It’s about quality of life - something that is very important to Sandy and I.

Her pain and other symptoms are being kept in check, more or less, with
medicines. She has a very small loss of part of her peripheral vision
on the left side, which may be permanent due to where the surgery was,
or possibly a result of swelling in the brain (which is normal after
surgery and she is on medication to reduce potential swelling). This
small amount of vision loss is in the lower left quadrant of her vision. Her brain and body are of course still in some shock, but she is improving each day.

Sandy does not want a pity party and people to feel bad for us. We do not know how this journey is going to go…

“Happiness leads none of us by the same route.”

So she is going to continue to LIVE with a brain tumor and FIGHT this brain tumor. Believe in that. And in case you didn’t read yesterday’s post… All of you have meant so much to us, and after we arrive home we will
need your continued support. Please know that nothing you say (or
haven’t said), nothing you ask (or haven’t asked), and nothing you do
(or haven’t done) will offend us. We realize how difficult this journey
is for all of you as well, but we hope that by continuing to share this
it will help us all. We want your visits. And your emails and calls.
And your prayers. If we’re not up to talking, we’ll let you know. This
journey does not have a quick finish line. It has it’s ups and downs,
just like the Tour de France. We believe that hope, faith, love,
courage, and a dash of humor will keep us on this path. Please continue
to join us - you mean everything to us.

We wanted to offer the following from the Lance Armstrong Foundation. Sandy and I have been inspired by and supported Lance in his battle against cancer - his own and everyone else’s. We have worn the yellow wristbands for two years now… ever reminding us to LiveStrong.

The Manifesto of the Lance Armstrong Foundation

We believe in life.
Your life.

We believe in living every minute of it with every ounce of your being.

And that you must not let cancer take control of it.

We believe in energy: channeled and fierce.

We believe in focus: getting smart and living strong.

Unity is strength. Knowledge is power. Attitude is everything.

This is the Lance Armstrong Foundation.

We kick in the moment you’re diagnosed.

We help you accept the tears. Acknowledge the rage.

We believe in your right to live without pain.

We believe in information. Not pity.

And in straight, open talk about cancer.

With husbands, wives and partners. With kids, friends and neighbors.
And the people you live with, work with, cry and laugh with.

This is no time to pull punches.

You’re in the fight of your life.

We’re about the hard stuff.

Like finding the nerve to ask for a second opinion.

And a third, or a fourth, if that’s what it takes.

We’re about getting smart about clinical trials.

And if it comes to it, being in control of how your life ends.

It’s your life. You will have it your way.

We’re about the practical stuff.

Planning for surviving. Banking your sperm. Preserving your fertility.
Organizing your finances.
Dealing with hospitals, specialists,
insurance companies and employers.

It’s knowing your rights.

It’s your life.

Take no prisoners.

We’re about the fight.

We’re your champion on Capitol Hill.
Your advocate with the healthcare system. Your sponsor in the research labs.

And we know the fight never ends.

Cancer may leave your body, but it never leaves your life.

This is the Lance Armstrong Foundation.

Founded and inspired by one of the toughest cancer survivors on the planet.

LIVESTRONG

Sandy and I are looking forward to getting home about Thursday (May 25th) this week. I should be able to check blog comments and emails as we go. And we also look forward to seeing our son Cameron (and having our friends who have not met him get the chance to) - he has been going to college in Hawaii and will be coming home for a long visit sometime in June. We also look forward to having some good times with friends and family soon - walks, hiking the ridge trail, evenings around our campfire, dancing to some live blues bands, and of course, another garden party with the Gnome as guest of honor!

All our Love and Thanks,

Dan and Sandy


24 Responses to “Living with a Brain Tumor”

  1. Anne and Andre Nowacki Says:
    May 22nd, 2006 at 12:13 pm Sandy and Dan, In a world of uncertainty, you can be sure of one thing. You are both loved, for good reason, by a multitude of people. Lean on any or all of us, when you need to.
  2. Leda Says:
    May 22nd, 2006 at 12:13 pm I was away for a few days visiting my daughter but you’ve been in my thoughts ALWAYS.Please continue to join us, we need you as much as you need us-believe it!
  3. HAM Says:
    May 22nd, 2006 at 12:56 pm OK…rolling up the sleeves, getting to work, more fighting, we’re there with you. Be safe on the drive up… Today we are getting hard rain, the clouds are rolling over the ridges, bringing freshness to last week’s dust, clearing the clouds of pollen off the trees and shrubs, making the landscape so colorful. Cleaning the cottonwood fuzz from around your garden and off your guest gardner’s face (babs). I was just out for a walk, and realized what a great time of year Sandy and you will be returning to here, the iris and lilacs are still in bloom, while the lupine are coming on strong. Birds galore - evening grosbeaks, blackheaded grosbeaks, calliope hummingbirds, band-tailed pigeons, goldfinches. Combining these floral displays with the sounds of birds are healing for the soul. They will welcome you home. Lovingly, Heather and Pat
  4. Mary Lou Johnson Says:
    May 22nd, 2006 at 2:53 pm Hi Sandy and Dan….brave powerful words from both of you…I’ve been looking for this prose about cancer and finally found it… What Cancer Cannot Do Cancer is So Limited It cannot cripple love,, It cannot shatter hope, It cannot erode faith It cannot eat away peace, It cannot destroy confidence, It cannot kill friendship, It cannot shut out memories, It cannot silence courage, It cannot invade the soal, It cannot reduce eternal live It cannot quench the spirit, It cannot lessen the power of resurrection. We walk to the edge of all the light we have and take that step into the darkness of the unknow. We must believe one of two things will happen: there will be something solid for us to stand on we will be taught to fly. love you, ml
  5. Eric S. Beardsley Says:
    May 22nd, 2006 at 5:11 pm dear Dan and Sandy, As Lance said in the letter you recently posted, your strength gives so many others hope and inspiration. Believe you me, we are full of hope and so inspired by your strength and attitude. Sandy, you are one in a million and if anyone is going to beat this, it’s you. We’re keeping the faith right along with you. Can hardly wait to see you guys. Love Pat and Eric (P.S. Paris says she is looking forward to seeing Cam too, and isn’t afraid of him any longer!)
  6. Susie Steblina Says:
    May 22nd, 2006 at 5:22 pm If you would like to escape for some special time…please know that Camas Meadows Lodge is open to you, friends and family at any time. Soon the Camas will bloom and the wild flowers will be spectacular. Also, there won’t be any spiders this time. Raid has done its’ duty for the spring season. You both know our prayers and love are with you. Life is measured by the love given and the lives that you touch. You both have given so much to all of us. Know we are there for you. Susie & Vladimir
  7. pk Says:
    May 22nd, 2006 at 7:02 pm Dearest Sandy and Dan, no words just now. Just a lot of love. pk
  8. Shirl Says:
    May 22nd, 2006 at 7:27 pm Sandy, I hate to tempt fate, but I cannot resist telling you about my day. As you know, I too have a Glioblastoma Multiforme Grade 4, diagnosed during my second brain operation 18 months ago. Like you, I was sickened by the statistics. I don’t know how it happened, but one day I just decided that I’d had enough of the grieving about the crappy hand I’d been dealt. That’s not to say that I still don’t have bad days, in fact, I still have plenty of those. The bad days, however, are minimal compared to the days that I “live” with cancer. Today was one of those days. Today, I went golfing. Today, on the back nine I got 7 out of 9 pars. Today, I kicked my husband’s butt, beating him for the second time in 3 days. Does life get any better? Not to me it doesn’t! Sandy, just remember that even if our days are numbered, we don’t have to waste the ones we have. Get out and enjoy life babe. At first it’s a very hard thing to do, but gradually it’s easier and easier to forget your fate, and enjoy today. Love, Shirl
  9. Henry & Nancy Says:
    May 22nd, 2006 at 7:53 pm Thanks for the update Dan-o! Your courage in the face of this and in choosing to keep friends in the loop is incredibly inspiring, though not suprising from two such wonderful people. I’m so glad that two of my best friends on the planet have each other and your love, shared sorrow, shared joy, and indomitable wills can be felt across the miles with little effort on our part. We share each of those with you in our own way. Let’s indeed do some hiking and dancing and laughing and shouting to the cosmos upon your return. All our love–H & N
  10. alex m and jo r Says:
    May 22nd, 2006 at 7:59 pm we love you…
  11. Robin O'Hearn Says:
    May 22nd, 2006 at 8:24 pm Hey, you two–DriveSTRONG on the way back to Washington. Sandy, you sitSTRONG in the passenger seat and be sure Mr. GnomeSTRONG wears his seatbelt. Also, don’t forget to eatSTRONG when you stop for food and sleepSTRONG….yada, yada, yada,….ok, you get the idea. I sent a separate message to Sandy’s email address about Portland. Have a good trip and thank you for keeping us in the loop.–Robin & Chris
  12. Fred Carani Says:
    May 22nd, 2006 at 9:09 pm I wish you much happiness.
  13. D2 Says:
    May 23rd, 2006 at 7:47 am Hey there - so nice to hear you are heading home. Sometimes “home” can make everything better. It will again, just like it did last time. You will feel it the closer you get. Time to have some fun along with the fight. Hope we can join you in Leavenworth, our barn/Bellingham, or Portland soon. Our thoughts, energy and good wishes come to you daily. Love, D2
  14. Susie Says:
    May 23rd, 2006 at 9:58 am Sandy and Dan, We continue to pray that you will be the exception to the statistics and that your new treatment heals, but does not make you feel crummy. We understand it is about quality and it sounds like you two have a lot of fun things planned to do when you get home. We just wouldn’t want you feeling icky when you and Dan could be at the top of some Ridge. Hmmm, What ridge could that be? I wouldn’t mind climbing it again myself. Thank you for your honesty in the last blog entry. We read between the lines and continue to hope, have faith and believe. When that starts to slip away, all we have to do is look into the eyes of the children, the tenderness of the animals and the beauty of the earth. It is then, when we are reminded for the reason ALL who are living with canceer FIGHT for LIFE! As always, Love and prayers, Susie
  15. Rosa and Julian Martin Says:
    May 23rd, 2006 at 11:55 am Dear Mrs Beardsley; Julian really misses you and prays that you get better, you are a remarkable woman and have a beautiful smile. Never give up.Thank you.
  16. luke Says:
    May 23rd, 2006 at 1:39 pm Sandy and Dan, Once again I sit here humbled by the strength and vision you two embody and share with all who have been blessed to know you. We love you guys. Luke, Steph and Addie
  17. Janet Says:
    May 23rd, 2006 at 6:46 pm Dan and Sandy,Thanks for being so open and honest. I know at times it is hard.You two never stop to amaze me.You are such an inspiration to us all who are lucky enough to know you.Thanks for letting us be a part of your journy, it really helps.Sandy I know you are a fighter of all fighters just remember to let us help any way we can.Have a safe trip home.
  18. Mary Says:
    May 23rd, 2006 at 6:58 pm my special friends and travelers, there are really no words at this time, but love for you both, a lot of caring, telling you that I will be there to help through the journey. That is a certain, you “Louise” are my sister, and Brad you know how I feel.. we are a trio “Thelma”
  19. pk Says:
    May 23rd, 2006 at 7:25 pm Sandy and Dan, cheers as you progress closer to home. Checking in on the Blog site. Seeking (and finding) good jujus here. Warm thanks to all of you of the Blog family. And Shirl, want to extend special thanks to you - your sharings today helped ease me a bit, soothed me a bit - as I read one BT-Babe’s words to the other. I found your words to resonate strongly for me on multiple levels. Sending wishes for a good night and peace to all. S&D, road warriors, be good - rest well - here’s a big hug!
  20. Judy Logsdon Says:
    May 24th, 2006 at 10:05 am Sandy and Dan: I am Mike and John Logsdon’s stepmom. I have been following Sandy’s progress ever since I learned about your story from the Spinningsouthward website. I have been so moved and so impressed with the determination and courage you have displayed in the face of this long battle. You have been so eloquent in articulating your feelings that I almost feel as if we know one another. You have given us all a powerful lesson in living and savoring every moment we have. What a gift! Sandy, your students are very fortunate to have had you as a teacher, because they have learned so much more than the standard curriculum. If anyone deserves to triumph over the odds, it is you. Jean Logsdon was such a person. Like you, she faced her journey with grace, determination and shared it openly with us all. She earned the admiration and love of all of us who knew her. It is fitting that her wonderful sons (and now mine,too) are biking their way down the Panamerican Highway to raise money for brain tumor research in her name. Please know that there are many of us out here that you have never met who have been touched and humbled by your story and feel they have met some truly unforgettable people. You are in the thoughts and prayers of all of us.
  21. Megan O'Connor Says:
    May 24th, 2006 at 11:20 am Dan & Sandy, As I read the many comments from your friends and family, I get a tingle in my spine. I think about how you two positively (and POSITIVELY) affect the lives of so many people. These wonderful people and myself are blessed, grateful, angry, hopeful, scared, inspired and amazed. Thank you for bringing us all a little closer to what is really important; our relationships with other people, animals and nature. We must not forget the gnome, who keeps us all smiling. To me, the gnome represents all the people who love you so dearly. Thank you for taking us all with you to California. Your descriptive, honest writing is like a magnet, drawing us all a little closer to you. Thank you too, for the photos which bring you home to me. Sandy, those red cowboy boots define you: beautiful and strong and sassy and fun. Love you both. See you soon. Megan
  22. jkw Says:
    May 24th, 2006 at 4:21 pm Sandy and Dan, Getting closer to home and hopefully feeling all these powerful feelings of Love and support. I look at my yellow bracelet that I believe pk gave me several years ago and think good thoughts for you and all of the other folks who deal with a similar but different journey. I can feel the power of the human spirit and the belief that we can help make our journey the best we can. Have an enjoyable rest of your trip home. I look forward to sharing through the blog and website. Thank you for your kind and giving spirits jkw
  23. Chris Rader Says:
    May 24th, 2006 at 7:51 pm Reading your thoughtful journal/blog, the Lance Armstrong manifesto, Shirl’s similar experience/attitude and the loving comments of so many of your friends brings tears to my eyes. As Bill and Peg Stark would say, “How deep the high journey.” I am so grateful to be part of your lives, and of a community that shares this passage with you with such love. I look forward to seeing you soon! Love, Chris
  24. HAM Says:
    May 25th, 2006 at 10:58 pm Dearies - you must be home by tonight, Thursday the 25th. Lots of little garden gnomes were at your home while you were down south. They wanted to make sure you walked into a beautiful presence, one to live strong in. We’re wondering if Sandy would be up for a little 1 mile walk up the 4th Of July Mtn trail this weekend? Chester lead a BirdFest walk there last weekend and thought Sandy would be quite impressed by the beauty of the Lewisia Tweedyii and their friends the lupine. Lots of volunteer sherpas can go along (and it’s not Wilderness, so the Sky Is The Limit!). Blessings with Love, H&P and Clover barky bark bark.

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