Links
• About this Blog A short description and how to post comments...
• Email address... if you would rather send a note privately instead of using the
• Sandy's website... Living with a Brain Tumor
• LiveStrong Challenge 2010 Help us raise money for the Lance Armstrong Foundation and Cancer Research
• See Bicycles and Motorcycles My personal campaign to help make bicycle riding safer
• Deirdre Kohler, a friend in South Africa -- Art, Brain Tumor and a Coffee Shop
• Wenatchee Brain Tumor Support Group Sandy's friends from her Brain Tumor Support Group
• Photos of our journey to Stanford in October '05 A few photos from our stay at Stanford for Sandy's first surgery.
• Mike and John's website - Spinning Southward... bicycling from Alaska to Argentina to raise money for brain tumor research

• General

• October 2010
• January 2010
• May 2009
• August 2008
• April 2008
• January 2008
• December 2007
• October 2007
• September 2007
• August 2007
• July 2007
• June 2007
• May 2007
• April 2007
• March 2007
• February 2007
• January 2007
• December 2006
• November 2006
• October 2006
• September 2006
• August 2006
• July 2006
• June 2006
• May 2006
• April 2006
• March 2006
• February 2006
• January 2006
• December 2005
• November 2005
• October 2005

• Login
• Podcasts
• RSS
• Comments RSS

Just call it a good day… no, make that a great day.

Sorry about the one week gap here. We had a great visit with Sandy’s parents, her brother and his wife, and Sandy’s niece and great niece over Thanksgiving. Much to be thankful for and celebrate this year (again!).
A blog-worthy event happened today that makes this a great day indeed… Sandy returned to her job as a teacher for the first time since October 17. We are so happy and blessed that she is able to get back to some semblance of "normal." And normal today was being mobbed and hugged by dozens and dozens of children (and co-workers) who were extremely happy to see her, to say the least. I drove her to school and stayed with her for a couple hours, soaking up all that great kid energy…. there’s some life-affirming stuff for you… fighting back those happy tears as I watched all that love the kids have for her… and her love for them. And her great fellow teachers and staff were of course quite happy to see her return as well. She took it "easy" today, helping teachers and substitutes in different classrooms. She plans on resuming her role as the first-grade teacher on Wednesday (she teaches third grade on Mondays and fourth grade on Thursdays). Getting back to teaching will be good for her state of mind and help build her confidence and strength back.
So it’s still Thanksgiving around here… every day is these days.
Good night,
Dan

Friday, 11pm…

Time has no meaning… it’s hard to believe it was only about a month ago that Sandy and I arrived at Stanford… after all we have been through since that frightening MRI in Spokane on October 10th, arranging the medical treatment at Stanford, the flight to Palo Alto, and all that happened at Stanford, her surgery and recovery, the trip home… seems like we’ve lived a lifetime in this past month.
Sandy finished her first round of chemo medicine on Wednesday night. Fortunately so far the only major side-effect has been fatigue. She is also transitioning onto another anti-seizure medication from the one she has been on for 6+ years. She hasn’t had a seizure since the one in 1999 that forced the true diagnosis of her brain tumor. But it turns out that the anti-seizure drug Dilantin diminishes the effect of the chemo drug (Temodar) that she’s on, so she is switching to an anti-seizure med called Keppra.
She has been real tired, but still tries to stay active… wrapping Christmas presents, adding to the decorations in the house, watching videos, listening to books on tape (like "The Five People You Meet in Heaven" - a great story), and writing thank you cards. She has also been enjoying reading all the emails, comments, and beautiful cards and messages from students at her school. They have really been cheering her up. Considering what she has been through, I continue to be amazed at her strength in dealing with this "siege" (as Susan put it so well). She is of course not without those melt-down moments and days (as I am too), but overall her attitude and resiliency shines through.
She probably put too much energy into trying to handle the small stuff of life this past week as we transition into what passes for normal in our lives these days. But she realized that trying to solve other people’s problems, and trying to resolve some differing local medical recommendations was not helping her heal and gain strength for this fight against cancer. So now she has dropped all that small stuff and is getting focused on what she needs to do. Trying to handle the physical and emotional pain of this journey can be totally overwhelming at times, so all the extraneous "normal" issues of life have to be let go of.
So it’s a good thing those angels are still out there watching over some of those "normal" details, like cars… Our main vehicle (an ‘88 Subaru with only 330,000 miles on it) broke down as I was driving home from my first short day back at work this past Wednesday afternoon. I knew it was a snapped timing belt, as that has happened before. So I coasted into a parking lot in town and had the car towed 30 miles to the shop the next morning. I had also been noticing a thumping sound in the front of the car since August, but figured it was just an axle boot needing grease, so I never got around to fixing it. I told the mechanic to check it out as long as it was in the shop. Well, he checked it out and called me up yesterday…
"The axles are fine," he said "but the ball joint on one side was about to break. You’re lucky…"
I gulped and said "Oh **** [expletive beginning with s]." I know enough about cars to know that if a ball joint breaks at high speed, basically the front wheel breaks off and you lose control of the car. We had driven back from Seattle over a snowy mountain pass just days ago. I thanked those angels for breaking the timing belt.
And in other thrilling news… this morning I was standing on the top rung of a 25-foot ladder leaned against one of our big trees, and I was fully outstretched and off-balance to grab a neighbor’s cat that was stuck way up there. As I grabbed the cat, I looked down from the shaky ladder, way down, and thought "hmmm, this is really stupid… after this past month… I think Sandy needs me too much to risk it for a cat…" Anyway, I survived. So did the cat.
My mom sent Sandy a framed poem she found at a store. Unbeknownst to my mom, it’s the same poem that I had printed on the back of Sandy’s brain tumor support group t-shirt a few years ago. I was wearing the shirt during Sandy’s surgery. My mom told Sandy that she almost didn’t send it because of it’s powerful words, not knowing how Sandy might feel about it. But she sent the framed poem anyway, not knowing of course that it has long been a favorite of ours. It’s good to take chances with that kind of thing. Here’s the poem…

Monday, 7:00pm…

Yes, still here… haven’t written anything for a week as there hasn’t been much "newsworthy" events until recently. Compared to our intense experience at Stanford, writing about the relatively quiet existence we’ve had since being at home (as wonderful as that is for us) would have not made very exciting reading.
Sandy is doing great, considering what she has been through, but she is fatigued and tires easily. Her parents came up for a great visit last week. We have been for walks (with the dogs of course), short shopping trips, the library for audio books and videos, and today I took her to the dentist in Wenatchee for a cleaning and check-up (where she bumped into a fellow teacher for an emotional reunion). She also made another dentist appointment for 6 months from now — "How’s that for optimism!?" she says. Afterward she even had enough energy to walk around Costco with me to stock up on food supplies. And there she bumped into a couple of her students and their father. It made her really happy to see the kids again (they looked thrilled at seeing Sandy too). Also this past week, Christmas came early to our house - Sandy wanted to put up all the Christmas decorations, a little tree, the lights, everything - it all looks great. So we get to enjoy it for two months instead of one.
So our life being back home has almost been normal… but not exactly of course… it has been just three weeks since her surgery.
Sandy still has pain and numbness around the incision area on the back of her head. She started taking the chemo pills on Saturday. She takes them right before going to bed, to minimize any nauseousness. [And thank goodness for good health insurance… the chemo pills cost $500 each (so the 5-day round costs about $2,500) but she just has to pay the $15 co-pay.] So far, after just two nights, she hasn’t had any nauseous feelings or other side effects except fatigue. This may be partly due to just starting and/or the anti-nausea pills she takes an hour before the chemo (the anti-nausea pills cost a mere $35 for each pill). So three more nights of the chemo pills, then a 23-day break before the next round, to give her body a chance to recover. The theory behind the chemo drug (called Temodar) is that it actually breaks up the DNA of the fast growing cancer cells. It’s apparently one of the best drugs out there right now for the type of cancer she has.
She will get blood tests every 2 weeks to monitor blood markers and any change that may weaken her immune system dangerously. In two months (late December - early January) she will get an MRI scan to check on any change in the tumor area and effectiveness of the chemo drug. And she will continue to get an MRI at least every two months for the foreseeable future. Her MRI’s and blood tests are being done through a Wenatchee oncologist’s office, with all test results and scans being sent to her doctors at Stanford for evaluation.
Sandy hopes to get back to work at least part-time after Thanksgiving (I’ll be getting back to work part-time sooner). We’ve had a great first week back home and are enjoying these beautiful fall days, with that taste of snow in the air.
Something new that we have been doing since Sandy’s surgery, as she is still having difficulty reading, is that I read to her every night. The book I am reading to her right now is the one we purchased at the Stanford hospital - "I’ve Had Brain Surgery, What’s Your Excuse?" - a very funny, touching, too-true story by a writer/artist who captures a lot of the intense, crazy and bizarre things that we have experienced as well. So I have to go… time to read…
Good night,
Dan

Sunday, 7:30 pm…
We’re home. Home, love that word… Great to be back and see the snow on the mountains around the valley… the last of the golden leaves clinging to trees and blowing around the yard… and the greeting by the very happy dogs and cat… and the banners and signs and balloons outside welcoming us home… and the massive pile of firewood rounds I had not chopped yet turned into huge rows of chopped and stacked wood (THANK YOU woodchopping crew! Unbelievable!)… and the yardwork and plants put to bed… and the food in the refridgerator and bakery goodies on the counter… and the flowers and notes and poems in the kitchen… what a wonderful homecoming. Our angels on the homefront have been busy indeed… thank you all. You bless our lives beyond measure. We can only hope to repay you all somehow, someday.
On Friday afternoon we met with Sandy’s oncologist at the Stanford Cancer Center. No real surprises with his recommendations, basically what he had told us before the surgery. Though the surgery got the active area of tumor out, the fact that it is now a grade 4 tumor means she cannot delay in chemo treatment. They like to start with the least toxic medicine first to see how Sandy responds to it. So we brought home the first round of her treatment (just ordinary looking pills in ordinary medicine bottles) which she will begin this Friday. Sandy continues to feel better every day, fatigued easily and in some pain, but feeling strong.
Friday evening we drove to San Jose from Stanford to return the rental car, got a cab ride to the train station and waited for the train. We were a bit early, and the train was a little late, so after a two hour wait we got on the train for the trip home at about 9:30pm…. looking forward to a slow relaxing trip home…. little did we know how wonderfully slow it would turn out to be.
After a few delays at different locations for track repairs during the night, we awoke in our little roomette (if you haven’t ridden Amtrak, these are very small rooms with two facing chairs that fold down into one narrow bed, with a pull-down narrow bunk bed just above that, so they sleep two people if you’re really compatible… but for us it was delightfully cozy). Not surprisingly because of the delays, we were still in California at daylight. We rolled into Klamath Falls and it started snowing. More delays for track repairs (no problem with us, glad they’re fixing those tracks) As the train climbed toward Chemult the snow was falling hard and there was already a lot on the ground. Quite a contrast to the palm trees and 75-degrees of Palo Alto.
We climbed over Willamette Pass and it was a full-on winter storm up there… it was beautiful to watch through the big windows of the train. As we dropped down the west side of the pass, traversing along the steep side of a mountain, there was a sudden sharp thump thump and the train came to a screeching halt. After a long eerie silence, the train conductor’s voice came over the speakers… "Ummm, folks, it appears we have crashed into a rock slide… but nothing to worry about, the train is not derailed… but there are some very large rocks on the tracks… but what is more of a problem is the rocks wedged underneath the train…"
Anyway, to make a long story short, they had to get a track crew from toward Eugene to come up, move the rocks and actually jack up the engine cars to get the rocks out. Luckily no major train or track damage. But we were sitting there about 3-1/2 hours, during which time it got dark. But we actually enjoyed it, because it coincided with a free wine tasting in the lounge car… so the entire time they’re working on the rockslide, we’re drinking wine and meeting some fun people. [And there’s the advantage to train travel over plane — the train has an accident and we’re able to sit there and drink wine and laugh about it. If a plane has a major accident, well folks your seat cushion is a flotation device, here’s the oxygen masks, there’s the exit doors…]. So the rockslide actually cemented our love of train travel. We had a great time, saw some beautiful country and met some really interesting people. And even though we got to Tacoma at 2:30am instead of 7pm, we would do it again… such a nice slow transition for us after 2+ weeks of intensity.
We took a shuttle van to the airport, picked up our car, luckily it started, drove out of the eerily deserted airport to a motel, checked in at 3:30am, tried to sleep until 11am this morning and left to get breakfast before hittng the road. As we’re sitting there eating, I look up and in the booth behind Sandy I see the back of a man’s head… a big area shaved, and the u-shaped incision and stitches indicating he had just had some kind of brain surgery. After Sandy sees it, we look at each other… and laugh a little at the irony that we can’t escape it all even at a pancake house.
So here we are at home, happy and exhausted… the woodstove glowing with firewood chopped by friends and angels…
Good Night,
Dan

4:30pm…

I left Sandy at the hotel this morning so she could relax and have some much needed time alone before we leave tomorrow. I went for a 4-mile walk on some trails in the rolling hills above the Stanford campus. It was beautiful and peaceful up there in the warm sunshine — dry golden grass with small groves of oak trees dotting the landscape — and big views of the entire area from San Francisco in the far distance, the campus, through the Silicon Valley and out to the hills east of here. Lots of hawks and meadowlarks up there too. It’s not the North Cascades, but in this urban sprawl it was paradise.
Tomorrow morning we’ll pack up, check out and go to the appointment with Sandy’s oncologist. He will go over the pathology reports and map out the chemo treatments Sandy will start soon.
Many people have assumed that Sandy’s brain surgery to remove the tumor is the end of the story and she will be fine now. Unfortunately this may not be true because with the type of cancer she has now - a high grade, faster growing type - all the new active area of the tumor could be removed, but not all of the old tumor can be removed surgically. This means that there is always a chance that areas of the old tumor could become active and grow again. The surgery was just the first leg of the journey. So the need for the chemo treatments is to break up the DNA of the cancer cells so they cannot continue to replicate. She will be on a brain-specific chemo drug, probably able to take it at home in pill form for one week out of every month for an unknown length of time, depending on its effectiveness. Further surgery and / or cyberknife radiation may also be used in the future if needed. Having said that, we still have a lot of hope and belief that she can get through this. Her doctors say everything is in her favor - she’s young, healthy, has a great attitude, and they caught this change in the tumor early on.

This has of course been a difficult journey here, but a big part of what has kept us going is all the love and prayers from everyone. Words cannot express our gratitude and thankfulness for the powerful connections this has created. The love and energy we have felt flowing our way has really been a life support system for both of us. The hardest part of this journey is that there is no quick finish line, but the medical professionals have given us a lot of hope and confidence in the treatments to come.
I may not be able to update this blog for two or three days as we travel on the train and head for home. But I will keep this wonderful blog thing going….

"Be strong, go with your heart, and believe in miracles because anything… anything can happen." - Marlo Javidando

Good night,
Dan

9 comments

11/02/05

Day Fourteen

Filed under: General
Posted by: Dan @ 11:02 pm

Wednesday, 8:00pm…

We went to Sandy’s surgeon’s office this morning to meet with him and have the 20 staples taken out of the incision in her head. She was dreading this procedure and figured it would be painful. Amazingly, it turns out it wasn’t painful at all for her. She was quite happy about that. You would think that someone who had gone through brain surgery wouldn’t be worried about staple removal… but I guess the idea of being awake for it got to her. And hard as it was to do, we then said goodbye to her surgeon, but he is still going to be her main doctor (along with the oncologist here) - reviewing all MRI’s that she’ll get in Wenatchee and mapping out the next steps.
Around noon we drove to Half Moon Bay (a half-hour away) to meet the two brothers cycling from Alaska to Argentina (if you haven’t read yesterday’s post… they are cycling 15,000 miles in honor of their mom who died a few years ago from a brain tumor, and to raise money for brain tumor research. Sandy managed to call them yesterday after seeing their story on a TV news show and arranged to meet them today).
We found Mike and John at the waterfront pub we had been to a couple days ago. Sitting outside in the sun, we had a great visit with them over lunch… heard their wild stories about cycling through groups of grizzly bears in Alaska and riding all the way through British Columbia with only two rain-free days. They have encountered a lot of wonderful people along the way and are doing a great thing in raising money and awareness for brain tumor research. I told them their mom was smiling down on them (she was an adventurer as well, passing that love of travel on to her sons). They plan to get to the southern tip of Argentina by June 2006.
What an incredible journey…. and a real life-affirming-life experience to meet them. Our new friends, Mike and John, left us and headed down the road, hoping to get to Santa Cruz by tonight. I gave them one of my "See Bicycles" bumperstickers, which they of course liked and they are also going to share Sandy’s website with others. See photos of them on Photos link at right, and also their website link is there. We’ll be following their progress.
Our plan now for getting home is to get on the train in San Jose Friday night and get off in Tacoma Saturday night, get a shuttle to our car at the airport, spend the night at a hotel and drive home Sunday. We’ve always wanted to take a train trip together, so figured why not now. It will be a nice slow transition back home and add a little bit of adventure to our trip home.
Good night,
Dan

5 comments

11/01/05

Day Thirteen

Filed under: General
Posted by: Dan @ 1:34 am

Tuesday, 11:00pm…
Seems like a little convergence zone here…. Sandy was watching the TV news this morning (since she hates TV news and newspapers, this was strange in itself). A reporter was interviewing a couple of guys at the Golden Gate Bridge in San Francisco who were cycling from Prudhoe Bay Alaska to the southern tip of Argentina, 15,000 miles. The purpose of their trip, besides an adventure, is to raise money and awareness for, you guessed it, brain tumor research. They are brothers whose mother died from a brain tumor a few years ago. They are raising money for the National Brain Tumor Foundation, a great group we have contacted in the past.
Sandy decided she had to talk to these guys. So she called the TV station after the interview was over. She was put in contact with the producer, who gave her the rider’s publicist’s phone number. She called her, told her the story and why she was calling. The publicist said, "Would you like to talk to them? They’re right here." So Sandy ended up having a great conversation with Mike, one of the brothers. In the meantime, I checked out their website - spinningsouthward.com - and learned more about their trip. It turns out they were going to be riding through the coast area where we had been yesterday. So Sandy arranged for us to meet them for a late lunch tomorrow at the pub we were at yesterday. It’s only a half-hour from here now that I know the fast way there. So hopefully we can connect with them tomorrow.
But first things first… Sandy will be having her staples taken out tomorrow morning (she’s not exactly looking forward to that) and we’re meeting with her surgeon. Friday we meet with the oncologist.
Today we walked around Stanford campus and discovered the church we had admired from the outside was open. So we went inside… what an incredible space. Words can’t describe it. See the new photos on the photos page (link at right). The angels were definitely listening in there, so I said a prayer for Sandy.
Sandy also got a couple of great packages in the mail today from the 3rd and 5th grade classes. This really lifted her spirits to see the kids’ drawings and hear their words as I read all the cards to her. And she also wanted me to comment on the quality of the drawings and the penmanship of the letters - very nice. She also thanks all the students and parents who have sent blog comments and emails. She is so blessed to have worked at such an awesome school for 17 years. They are her second family, and the students and parents are the greatest.
Good night,
Dan

7 comments