My apologies to friends who have to hear it this way, but phone calls to parents took it all out of me and I have nothing left. And I want to be with Sandy every minute. But we felt it important that everyone gets the word as soon as possible. I can barely breathe and the river of tears we have cried today has all but swept us away.
Sandy, our son Cameron and I went to her oncologist this morning to learn the results of the MRI Sandy had late yesterday. The results are not good… devastating, but not unexpected given the dramatic change in her condition the past week. The MRI showed that the tumor has grown significantly and there are two other tumor areas, and all these tumors are causing brain swelling. The chemo drugs she has been taking have not worked. So her oncologist here and the oncologist at Stanford have decided that she should stop taking the chemo and continue with just the Decadron to ease the brain swelling. Her doctors are devastated, but their compassion has eased this journey.
The cancer is too aggressive. There is nothing else they can do for her. This type of cancer has no cure. They cannot say how long she will live, but it may be just a few weeks. She will have the best home care possible to ease any symptoms. The decadron has already helped her. She is moving a little better and the headaches are gone. The good news is Sandy is off the chemo - she’s happy about that.
We are going to continue to live everyday and have as much fun as possible. In fact today, after getting this worst possible news, Sandy in her typical compassionate way, turned it around. We were driving home and went past a statuary shop that reminded Sandy of something she had been meaning to do. We bought several concrete animal sculptures - rabbits, a turtle, a bird - and delivered them to the Wellness Place / Good Grief Center for their children’s garden.
The yellow wristbands we and our friends wear are not jewelry — we’re going to continue to LiveStrong. We still encourage people to visit us, and your comments really help strengthen us. Keep the love and prayers coming. We need you more than ever.
Dan and Sandy
These words are hard to write…
The past week has been a bad one for Sandy. She is experiencing a major setback. At first, a couple of weeks ago, we thought she was having a reaction to the chemo drugs - fatigue, etc. But this past week has seen a steady increase in the physical problems she has been experiencing. Her peripheral vision in the left eye has gotten worse - the “blind spot” is much larger. She has lost a lot of the control of her left side - she has difficulty moving her left leg and arm. When she walks she is very unsteady and drags her left foot. Because of this, as well as the vision loss, she veers to the right when she walks. She was able to get around using hiking poles, but even that is difficult now. Her left hand is “like it belongs to someone else” as she says - difficult to grasp things, put clothes on, do the simple things we all take for granted. She has also had some headaches this week, which she has rarely had. There are also cognitive changes, more difficulty understanding and retaining things like what we are going to be doing tomorrow or what happened yesterday. This has all been unbearably frustrating for her.. and heartbreaking for me.
The past two days we talked a lot about getting an MRI for her as soon as possible, not waiting until August 1 as originally scheduled. Fortunately today we had her regular 2-week appointment with her local oncologist. Her doctor was of course very concerned about the changes in her condition since two weeks ago. She ordered an MRI immediately and the radiology people worked late to get Sandy in for her 30th MRI (yes, 30 in the past seven years), and, as usual, I held her hand and rubbed her legs during the 30-minute MRI. She and Sandy’s oncologist at Stanford also decided to put her back on Decadron, a steroid pill that reduces brain swelling. Because that is one of the possibilites - swelling from the brain tumor increasing in activity or a delayed reaction to the surgery 6 weeks ago or possible bleeding in the brain. We meet with her oncologist tomorrow (Friday) morning to learn the results of the MRI. And then we will know what is happening to her, and make decsisions on what comes next. We are praying for the best and hopeful the Decadron will ease her symptoms.
Despite this setback, we still encourage family and friends to stop by and see us anytime. Just don’t stand on Sandy’s left side - she may not see you. Our thanks to everyone for the comments, cards, visits, gifts and love that keep coming our way.
Sandy found a part of a poem she wanted me to share…
Blessed are they who make it known that I am loved,
respected and not alone.
Blessed are they who can ease the days on my journey
Home in loving ways.
Yesterday evening, on the 10th anniversary of our wedding, Sandy and I went to the place where we exchanged vows on June 22, 1996 (just a mile from our home). We remembered the day and toasted ourselves and all our family and friends who were there. It was a magical evening in a special place to us…
Sandy in her wedding dress, right where we were married.
See more photos of our anniversary HERE
PS - We have really been together 17 years - see last post
The season of the longest days… and, thankfully, the shortest nights. Because the nights can be the toughest to get through.
The past few days have seen extreme highs and lows for Sandy and I. A fun barbeque dinner at some friends home on Saturday. Then we had a great Father’s Day — a 200-mile loop drive to see our son Cameron’s grandparents on his dad’s side, which included going to a wonderful Baptist church service with them (with great singing and a minister who said some very poignant things)… to a surprise visit to Sandy’s parents home, and a good time with them and her brother who happened to be there as well. Very nice to say the least to have that time with Cameron and reconnect him with his grandparents.
Then I think all that excitement, travel and activity — coupled with the chemo she is taking — really took a toll on Sandy. Monday and Tuesday were rough days. The chemo is making Sandy extremely fatigued and her partial visual loss is disconcerting and frustrating. And the acne outbreak - a chemo side-effect - is painful and depressing for her (as she says: “I’ve had perfect skin all my life, now at 44 I get acne, where’s the justice?”) . The visual problem, along with fatigue, has made her unsteady and slow in walking around. But today she bounced back — we went out to lunch, and she had several friends stop by to see her and saw friends while we were walking our road, and talked to good friends on the phone. Her energy was quite high most of the day. It felt so good to see her rally like this after the past couple of days of depression and tears for us. We’re doing our best to ride out the ebbs and flows of this journey.
Tomorrow, June 22, is our 10th wedding anniversary. Though we have actually been together almost 17 years (more about that on Sandy’s birthday and our real anniversary on July 13).
So here’s to the Solstice…
They are many. And they often come in small packages… about kid-size actually…
Tuesday and Wednesday this week were amazing days. Sandy and I, with her parents and our son, went to the last two days at Sandy’s school. Tuesday was the annual school picnic at a nearby state park…. watching the kids play all sorts of games and running around with that energy that only kids have (though some of the teachers kept up with them pretty well). Then it was time for the picnic barbeque. And then the main event - the kids go swimming in the Columbia River, which is always very cold anyway, but especially cold this day - with a light rain falling and the river running high with snowmelt. Those kids were crazy!
But the best part was watching the kids light up when they saw Sandy (since she has not taught school since the end of April, before her surgery)… she got countless hugs and smiles from all these great students, and her fellow teachers and staff as well.
See photos of Tuesday and Wednesday HERE
Wednesday we all returned to her school for the final day of class.. they have the annual talent show and the kids go home at noon. The talent show was a lot of fun — and there’s a lot of talented kids in that school. Near the end of the program the school principal presented Sandy with a check for over a thousand dollars — money that the students had raised themselves for Sandy by selling wristbands with words like “Hope,” “Faith,” “Love,” “Courage” etc on them. It was unbelievable. These kids have shown so much love and support toward Sandy… we were all in tears. And then it was Sandy’s turn… she read a speech she had written to thank the students and staff at her school, and present them with a certificate we made for them. Reading the speech itself was a real challenge for her due to visual problems from the brain surgery, but she read it beautifully and we were all in tears yet again.
Click HERE to read the “Blessings” speech Sandy made.
And of course there were more countless hugs for Sandy. These two days were very special, powerful and touching. And having Sandy’s parents and our son with us made it even more special. Words can’t describe our feelings. We extend our heartfelt thanks and deepest appreciation and love for the students, teachers and staff at Orondo School. You are all truly what makes it the “School with the Biggest Heart.”
The past week has been a ride of big ups and big downs…
from the joy of our son Cameron arriving home from Hawaii for an extended stay…
and having Sandy’s parents, brother, sister-in-law and great niece stay with us for a few days…
to Sandy feeling wiped out, nauseous, thrashed and dealing with a rash on her face at the end of her first week on the new chemo drugs.
After a full week on the new chemo round, the drugs caught up to Sandy on Saturday. They are definitely harsher on her than the Temodar she had been on before the recent surgery. Yesterday she did not even get out of bed. But today (Sunday) she felt surprisingly better, and we went on a short hike on a nearby trail with Cameron. She felt pretty good on the walk, but unfortunately the exertion aggravated the rash she had developed from the chemo (probably the Tarceva). Rashes and small blisters appeared on her arms, legs and neck — she was probably sweating out the chemical toxins, which irritated her skin even more. But despite that, she and I were elated to be out hiking, especially with Cameron there.
This week we’re looking forward to all of us and Sandy’s parents spending a couple days at her school for the end-of-school picnic and talent show. Sandy will get a chance to say goodbye to the kids and staff for the summer.
The weather this week seemed to be a fitting backdrop to our emotional and physical ups and downs… bright, warm and sunny interspersed with thunder, lightning and dark, intense rainstorms.
“If there were no clouds, we should not enjoy the sun.” -proverb
Sandy and I had a great and very fun weekend. Saturday night we went to a local pub with some good friends to see a blues band. We had a lot of fun dancing and laughing the night away… and the Gnome made some new friends too…
Our thanks to Mark, Kelly, Bill, Susan, Henry, Nancy, Club Crow and the Junkyard Jane band for making this such a fun and unforgettable night! Dancing and laughing with good friends can cure anything.
Yesterday, Sunday, we went to a retirement party for Mary Lou, a teacher Sandy has worked with at her school for a long time. But it wasn’t your usual retirement party. It was on a yacht on Lake Chelan. The yacht is owned by some other folks Sandy has worked with at the school. The yacht is a classic, beautiful boat built in the 50’s and was once owned by Dean Martin. We had a great time cruising the lake and enjoying good food and good friends…
Thanks Scott and Caprice for hosting the party on board the Innamorata (Italian for sweetheart)! For more info on chartering their boat and dinner cruises, see their website. We highly recommend it! Being on the water in such a beautiful place with good friends can also cure anything.
Sandy started the chemo last night and so far is feeling OK. Thanks again for all the emails, comments and cards. We’re cruising along on your love and support.
On Thursday (June 1) we met with Sandy’s local oncologist and she removed the 22 staples from Sandy’s incision site. It was relatively painless, though a few of the staples got her attention and she grabbed my hand and our friend Mary’s hand with a death grip as she winced. Immediately following the staple removal, our little friend Ben Nevis - all the way from Scotland - made an appearance (thanks Pat and Heather!) and made Sandy feel a bit better. I think the anticipation and fear of having the staples taken out was worse than the reality for her, as it was after her first surgery in October.
And of course the Gnome was there…
with Sandy’s oncologist on the left and her friend Mary (aka Thelma) on the right.
And more importantly we talked about the next round of chemo treatment for Sandy. She will be taking a drug called Tarceva every day. This is a cell growth inhibitor and is supposed to slow or stop the rapid cell growth of the brain tumor. The other drug she will be taking is called Cytoxan which breaks up the DNA of the fast growing cells. She will be on that drug for seven days, then off for seven, then back on. She will be on these drugs for at least the next two months, and longer if she tolerates them well and they are working. Both drugs are in pill form, so she can take them at home. Side effects vary widely, so we will see how she does with them. She starts the first round tomorrow, Sunday June 4. More on the chemo in the coming days as we learn more.
A big thank you to Lisa and her wine research assistant Amy for bringing us a wonderful home-cooked gourmet dinner last night. It was a fine evening out in the Garden of Friendship, sitting at our new table friends had recently bought us. And a big thank you to Susan for getting me out on the bike again today, for the first time in over a month. So LiveStrong Ride team members - watch out, I’m training again.
and Hope… Faith… Courage… Strength…
Tuesday, the day after the great hike, Sandy and I drove the 35 miles to Orondo School where she teaches. It was a surprise visit and her coworkers and the kids were as thrilled to see her as she was to see them. She works with some incredibly loving and supportive folks. [ Thank you for the gift certificate to Jan’s Hanging Gardens Shop. We’ve already used it to buy a couple of huge, wonderful hanging flower baskets for the garden patio. And thanks for the “Birdsley Inn” birdhouse - it will soon be a home to a swallow family. And thank you again for the generous donation to the Brain Tumor Fund bank account. ]
And of course it was wonderful to see the kids again and watch their excited reactions when they spotted Sandy. She got so many hugs from these great children - they almost lifted her off the ground at times in big group hugs. We were both in tears - joy mainly - it was so touching to see this huge outpouring of love they all have for Sandy. What a gift. A funny moment… Sandy was showing some of the kids the staples and shaved area on the back of her head, explaining that her hair will grow back soon. One little girl looked at me and back to Sandy… “Will your husband’s hair grow back too?”
And we also learned how truly loving and caring these kids are. They have been selling wristbands - with individual words on unique colors - Dream, Strength, Courage, Love, Hope and Faith. All the money they are raising is going to Sandy - a wonderful act of kindness. It’s amazing seeing all these multi-colored wristbands on the kids…
Orondo kids and staff, you’re the greatest!
On our way home we stopped by my office at the Forest Service to see some folks I work with and haven’t seen in a month. Thanks again to my coworkers for the great banner and all the gifts and all the support. I’m blessed to work with such wonderful folks as well.
Last night we had a delicious dinner with Bill and Sue at their beautiful home way up Icicle Canyon… more healing energy to be in the mountains with friends.
Later today, a big event - Sandy will have the 22 staples taken out of her head incision. And we’ll meet with her local oncologist to go over the next round of chemo drugs, which will start soon.
The Gnome is sporting a new LiveStrong hat band…
And he’s looking forward to seeing you in the Garden of Friendship.