Sunday, 8:00 pm…
Somehow, without a deliberate plan of doing so, we ended up going back in time today… probably in a subconscious attempt to escape our present reality. After a pretty good night of sleep finally, we went out to breakfast at this place in old downtown Palo Alto that I had noticed yesterday. It’s an old diner that started in the 1920’s and is just a classic place - all original interior with the old booths and fountain bar - and good simple food too. This evening we went back downtown to go to an old movie house we had seen… but it wasn’t just any old movie house. The Stanford Theater is truly like stepping back in time… and they only show old movies there (we saw And Then There Were None, 1945, from the original archived print from film archives - amazing quality - one of the last places in the country that can show these old original film prints) . The theater has been restored to it’s original look with beautiful carpet and sofas in the lobby and a large balcony, art deco lighting, a huge square screen and the best part - after the movie ended, a huge amazing organ rises up out of the floor right in front of the red curtain onstage with a guy playing these old songs on it - the organ music was a perfect end to this day of going back in time… way back…. before all this. It was a good escape for awhile.
Sandy is doing well and continuing to improve. She will be in the hospital one more night, and then we’re back to the hotel through next week, when she has more appointments here. Today has been a bit quieter for her. She had a nice heart-to-heart chat with one of her doctors early this morning before I got there. I helped her brush her hair, so she’s happy she’s looking better.
After awhile she started feeling pretty good and wanted to go down to the hospital gift shop to buy something for her "brain tumor buddy" roommate who was leaving today. So she took the hospital gown off (yes, the embarrassing kind) and put a t-shirt and sweat pants on… and off we went down to the shop. Luckily it wasn’t far - but an escalator and elevator ride - and she did fine. So we’re looking at books to buy her new friend and this one caught our eye… "I Had Brain Surgery, What’s Your Excuse?" It looks like a very funny true account complete with drawings and cartoons. So we bought two - one for us as well. And also got her some lotions and a card. I put a couple LiveStrong wristbands in the gift bag as well.
About a half hour ago, her roommate (and her great caring son) left us for their home nearby… wearing the wristbands. It was quite emotional for all of us. She and Sandy really bonded over the last three days. Her friend also had a brain tumor removed by the same doctor, but she has not gotten a pathology report back yet. She was diagnosed ten days ago with the tumor, and then the surgery this week. At least we’ve had six years to prepare for this possibility. They are both really tough strong women who will get through this. They have been alternately joking and helping each other the whole time. It has been good for me too, to be in the company of such strong women.
A physical therapist checked Sandy out and gave her the OK to be as active as she can handle right now. She’s had some great nurses, who quickly become impressed with her strength and sense of humor… but can also hold her hand during those not-so-tough moments. Great people here. Sandy also had the I.V. port in her neck removed this afternoon - a big relief as it was causing her a lot of discomfort. Now she just has an I.V. port in her arm as a precaution, if they need it. She’s eating more solid foods now and that’s helping her build strength. I’m hoping she might be up for a walk out to an outdoor terrace later to get some sunshine and fresh air.
So we’re looking forward to getting out of here tomorrow. And no, I didn’t sleep any better at the hotel, being far away from her. Should have slept on the waiting room couch….
Good morning… though I’m a bit ragged and bleary from another night on a hospital waiting room couch, knowing Sandy is sleeping soundly not far away fills me with a lot of joy and gratitude. She has had trouble sleeping because, as she says, "I’m just so happy to be alive, I want to enjoy every minute…" Last night I read her the new comments people have sent her — felt so good to be back in the routine of doing that every night (we had a bit of catching up to do since I couldn’t read them to her in the ICU). She really loves hearing from people and is so grateful - it has given her a lot of energy and laughs and hope.
She is sharing a room with a woman who also had brain surgery to remove a tumor - by the same doctors, just after Sandy’s surgery. I can’t even comprehend how someone can do that kind of surgery, much less do it twice (or more) in a day - truly incredible and gifted people. And Sandy is so blessed to be in their hands - the assured, calm confidence they have gives us a lot of hope.
Maybe I’ve talked too much about angels… I went for a walk yesterday over to the old part of the campus. The sun was low and lighting up everything with that warm wonderful late afternoon light. The old stone walls and arches around the big courtyards glowed in the sun or lay in warm shadows. It’s a really beautiful place and I had it almost to myself, no one around. So I’m strolling slowly along one of the long walkways along a building - stone archways on my right, and stone walls to my left - these walkways appear to go on forever when you look down them… when I started hearing a beautiful sound that slowly got louder. It sounded like a chorus of voices, low and then rising, changing tones like a Gregorian chant… but there’s no one around but an occasional student walking by. The voices seemed to be coming from the walls, echoing softly around the courtyard. I felt like I was in a movie and this was the low soundtrack background music. I walked for about five minutes, hearing this beautiful sound, wondering if it was real or if it was only what I wanted to hear and some angels were out there… when I came around a corner and found the source - a group of about 12 young men, all dressed in black pants and white shirts, standing in a small circle and singing these continuous chanting notes. I stood there awhile enjoying it, happy that I wasn’t hearing things - not that I would have minded hearing such wonderful music… then walked back to see Sandy.
Well, I have to go see if she’s waking up yet…. can’t wait to see that smile of hers. More later…
Well, when they found me wandering the halls of the hospital carrying a volleyball and talking to it [thanks for that visual Babs.. probably not far off the mark] …Sandy kicked me out of there and back to the hotel to clean up. Unfortunately the surgery hasn’t diminished her capacity to boss me around a little bit. So I walked outside into the first cloudy rainy day we’ve had here, looked up and there’s a rainbow arcing into the hills west of here… but it was completely cloudy, never seen a rainbow without a little sun somewhere.
Don’t mind me if I’m seeing good signs in everything… life just has an intensely focused and illuminated look to it right now…. like everything is lit from within - people, the amazing artwork in the hospital hallways, flowers, old stonework, the red-tailed hawk sitting on a branch just ten feet from me, everything… not taking any of it for granted. Life is truly beautiful in ways I can’t even begin to describe. I feel like a sponge soaking it up - especially when I look at Sandy.
When you live in one and aren’t a patient, hospitals are amazing places [don’t worry, I’m not planning on moving in permanently]. It’s just that you’re surrounded by all these lives, all these stories -good ones and tragic ones - it’s like everyone’s emotions are just laid out there, nothing hidden. Or maybe it’s just me opened to seeing it clearer. But you can see the stories in their faces… the exchange of looks. Sometimes I meet eyes with someone and there’s this knowing that we’re here for someone special to us - this shared pain and fear. And then I’ll get a look from a doctor or nurse walking by and their smiles say… hang in there, it will be ok, we’re here for you….
Even the security guards are understanding. Last night in the middle of the night I was laying on this couch in the waiting room (with blankets and pillow supplied by a nurse) and heard a guard talk into his radio… "…yes, we have a guest here on B3, and he’s OK, all tucked in."
Sandy had her first solid food today and is of course quite happy about that - chicken broth for breakfast wasn’t getting it anymore. One of her doctors removed the bandage and gauze covering the surgery site… and naturally it’s quite a site indeed - about a four to five-inch diameter shaved area on the back right side of her head, with a 5-inch long incision that has been stapled with a lot of staples. But it’s healing well, that’s the main thing, no infection. And they are not going to cover the incision site anymore, just to get air to it so it will heal faster. She will get the staples (sutures they call them) taken out later next week. She’s in some more pain now that anasthesia has worn off, but some other meds are keeping pain under control.
Well, I better shower, grab my volleyball and get back to the hospital…. more later
10:30am Good morning… and yes, it is a good morning. Sandy got through the night in ICU just fine. The very kind nurses let me in a couple hours before the official 10am visitation hour. She’s a bit tired from all the drugs - various pain killers, steroids, anti-coagulants, etc. - but she was able to angle the bed a little higher and take her first sips of water and 7up, a little broth, and a couple bites of jello. Finally I got to feed her, just like she fed me last fall after I got hit on the bike. She was very happy to be able to drink something because until now she could only get fluids through an I.V. line of course. And she’s still has her sense of humor… the nurses are impressed. She’s a tough cookie and is looking pretty good. I think I must look a little better too - finally passed out on a chair-bench bed I rigged up in the ICU waiting room - after 40+ hours of no sleep, I managed to drop off for about 4 hours. Amazing how adrenaline can keep you going… along with all the love and energy flowing this way from friends and family. Sandy is getting moved to a regular room at 11am, so I have to get off here. Hopefully post some more later. Love and thanks, Dan
Around 12:30 Sandy was wheeled out of ICU — a very intense, at times noisy environment with trauma cases in the same room - but the nurses are great in there. I don’t know how they do it. Angels, definitely angels. The gentleman who wheeled her to her room was real nice and had us laughing a bit. As we went by the nurses station, he said hello to Sal and told us that he would be Sandy’s nurse today. He then told us when we got to the room that Sal was one of the best nurses here, a real compassionate guy — who also just happened to be driving across a big bridge near here recently when a bus load of people crashed and launched a bunch of people into the water. Sal jumped the 25-foot+ drop into the water and saved some people. Like I said, the angels are real here. Sal’s a great guy, but unfortunately almost off duty. Hopefully we’ll see him tomorrow. But I can’t wait to see the next angel.
Sandy has been sleeping soundly this afternoon for the first time. She didn’t get but a couple of cat naps in ICU. She was also able to walk to the bathroom and got to see herself in a mirror for the first time. Let me just say that he lady who cut her hair the other day would be mad. Her pain level is being kept in check pretty well now that anasthesia has worn off.
I have to sign off. The neurological surgery team is coming by to visit her this afternoon and I don’t want to miss them. Luckily this health library computer is just down the hall a couple minutes away — and I found a computer tucked away that no one knows is here, so that makes these posts easier with no one standing in line.
More later….10:00pm…. Sandy continues to improve… and she’s not in a huge amount of pain, thank goodness. Very fatigued of course, but able to walk on her own (with a little assist here and there). I walked her down the hall and back (maybe 40 yards each way) and she did great. But it really made her tired. Then I got to sit in a chair next to her bed, hold her hand while she slept and watch a little of the world series…. life is good. Had planned to write more, but it’s late and I’m quite tired - but also quite happy. Good night Dan
We’re blessed… Sandy got through the surgery. I’ve seen her in the Intensive Care Unit four times so far, and each time she’s looking better. The first time I saw her, around 1:00pm, she was awake, able to talk and wanted me to send her love out to everyone. She will be in ICU through tomorrow probably and then moved to a regular room. The nurses are keeping close watch on her, and she’s doing relatively great, considering what she’s been through.
It was the longest morning of my life… we got here at 6am, she had an MRI at 7, and prepped for anasthesia by 8. Up until then, I could be with her, but then had to say goodbye. The hardest goodbye for me ever, even having the faith that she was going to be OK. Those few hours seemed like an eternity. The surgeon came out to talk to me around 12:30 and said everything went smoothly and no complications. He did say what we already figured was true though, that the glioma (tumor) appears to be a higher grade (meaning fast growing), but they won’t know for sure for several days after tests.
Finally they brought her by on a gurney on the way to the ICU and we were able to talk briefly. What a huge relief. I lost it, again, and walked out into the sunshine crying with a mix of joy and fear. But mostly joy that she appears to be OK from the surgery.
Each time I’ve talked to her (they only allow me in ICU for a few minutes every two hours) she appears a little stronger, can talk more and is even making jokes…. which she did on the way into the operating room as well. She’s amazingly strong. I’m staying here at the hospital tonight, probably sleeping on a couch, just so I can at least be near her, even though I won’t get any more visits after 10pm. I better sign off until tomorrow, I’m at a computer in the health library and people are waiting to use it.
Thank you all again for the wonderful messages, thoughts, prayers and love. You’re helping us pull through this.
Another beautiful day of warm sunshine… and perfect music….
Some things are just meant to be… Last night about we went down for a soak in the outdoor hot tub at the hotel. A warm night with a few stars showing above. We started chatting with a couple guys and a woman who were in the tub. They were musicians from C
So today, after taking a couple of wrong turns driving to the Memorial Hall, we arrived at the concert…. and went up to ticket window wondering if we would even be able to get in because the number of people outside waiting to get in made it look sold out. I noticed the ticket price of $50 for a good seat. Just then a man approached us holding up a couple of tickets… "Want some tickets?" We hesitate a second, thinking he might be scalping at a high price or something. "Free", he says, "and they’re good seats. Oh, and here’s a couple more you can give away to someone else, I have to get inside." Astonished at this good luck, we grabbed the tickets and thanked him, gave the other pair of tickets to a couple walking up, and headed inside. And yes, they were great seats - 6th row $50 seats right near the stage. We couldn’t believe it. Had I not gotten lost on the drive, parked a half mile walk from the theater, the timing to bump into that guy with the tickets would not have happened.
Like I said, some things are just meant to happen. The concert was unbelievable - I can’t even begin to describe it, but it touched our souls and moved us profoundly. Music like nothing we’ve ever heard, yet it was deeply familiar at the same time. The voice of Dawn Upshaw was incredible and a perfect match for the styles of music. After the concert, we met two of the musicians from the night before - Michael and Bridget - and thanked them. Sandy shared her story with Michael. We walked out into the late afternoon sunshine… soothed, energized, at peace and loving life that it gave us this gift of healing music.
Then back to our hotel (moved back to same one we started at on Wednesday) which is very quiet and has a little patio overlooking a creek flowing through a green forest, with roses and ivy outside the door. We look forward to getting back here, hopefully on Thursday.
Tomorrow is S
Thanks for all the love.
A peaceful and easy day today… no medical center, no doctors, no forms, no appointments. Just a day for us. We got out of the hotel around noon and drove the 10 miles to the Stanford U campus (tomorrow we move back to the first hotel we had here which is just a mile or two from campus). On the way to the campus we stopped at a couple of bike shops and gave them my "See Bicycles" bumperstickers to distribute — so we’re going national with this driver education campaign now. Met some really nice folks at the bike shops and shared bike-car war stories (I won).
We spent most of the afternnoon until about 5pm walking around the campus — a very large, beautiful place that is closed to vehicles. Nice to get away from cars in this car-filled crazy-driver area. Walking through the beautiful old spanish style buildings, courtyards, fountains, parks filled with big trees was so nice for both of us. Check the links section to the right to see photos of Stanford. Tomorrow another day of resting up (except for moving to another hotel) and preparing for Monday.
I’ll keep this post short you’ll be happy to see…
Another good day that reinforces our sense of the healing energy of this place…
Walking into the Stanford Cancer Center itself was a wonderful experience… an amazingly peaceful, healing place… a new, beautifully designed building full of natural light, warm colors and wood, and artwork everywhere. It looks more like an art gallery than a typical hospital… very calming. But of course the doctors rooms look like doctors rooms everywhere. But the impression of the entrance area lasted a long time.
We met with the lead doctor of oncology today to learn about chemotherapy treatments post-surgery and were very encouraged by his attitude and what he said. Things like… "We’re optimists around here…" and "I don’t want to go out on a limb here before surgery and the pathology exam, but judging from the MRI scans I’m going to be bullish on this one… I believe we can control this…" Of course, great words to hear even knowing that he can’t say anything for sure until meeting with us on November 4th. And even then, no guarantees about how Sandy’s cancer will respond to chemo treatments. But highly encouraging — we’ll take it at this point. It looks like initially at least, for the first round, she will just take a pill (a chemo drug called temodar) for a week out of every month for a year or so, depending on MRI results down the road. We walked out into the warm (perfect 70’s) blue sky day of Palo Alto, strolling past ponderosa pines and palm trees, smiling more than we have in a long time. We walked to an open-air shopping area near the campus and Sandy found a salon to get her hair cut and styled — she has to look good for that surgeon you know. Oh, that was good news for her yesterday too (not that she cares that much) but her surgeon says he will only have to shave a relatively small area of her head to access where the surgery will be, and her longer hair should hide it. She was all ready just to go get her head shaved ahead of time and be in control of her hair destiny, but at least she got a nice style out of the deal anyway. It looks great. Later we went to a Stanford Shop and bought Stanford t-shirts and caps, since Sandy will soon be an honorary alumni.
I forgot to mention yesterday the one thing that helped Sandy survive the flight down here — she had Lance Armstrong’s first book in her lap - It’s Not About the Bike, open to the page with the great photo of him taken during his chemo days - looking straight into the camera, "bald, scarred and brooding" but also determination in his eyes. Sandy looked into those eyes (and mine occassionally of course) and gathered strength…. as we rocketed toward this place of healing… Oh and another good sign after the plane (an MD80, Pat) landed in San Jose - we exited the plane not through the usual tunnel labyrinth attached to the door and into the terminal (it’s a small airport), but through the drop-down hatch at the rear of the jet - down the half-dozen steps and onto the runway into the warm California sunshine…
Sandy and I want to thank everyone for all the great comments and emails — they’re really helping us through this.
We arrived in Palo Alto yesterday. Survived the flight from Seattle to San Jose — Sandy hates flying, I mean really hates flying. Also survived a near-miss broadsiding in our rental car by a pickup truck, just 3 minutes out of the airport parking lot. Now that would have been a seriously bad ironic deja-vu way to go (I later put one of my "See Bicycles" bumperstickers on the rental car for good luck). Luckily the hotel we stayed at last night was a peaceful quiet green oasis in this very sprawling urban place. We were both rattled and dazed from the long day of traveling… holding each other… tears in the night.
Today we drove the short (but long) trip to Stanford Medical Center — a surprisingly large, beautiful and peaceful setting with low buildings, parklike grounds, fountains, etc. We felt good energy and healing here right away. We met Sandy’s surgeon for the first time (we had both talked to him on the phone last week). Dr. Chang is a very confidence-inspiring man, to say the least. And not in a brash egotistical way… but a peaceful way. He explained everything step by step, and clearly. And answered all our questions directly. We both immediately loved the guy (though that had already happened on the phone). He is confident that the new active tumor area can be removed with minimal risk. Though of course no guarantees that it won’t recur elsewhere nearby, given the type of tumor that it is. And that’s where the chemotherapy treatments will come into play. [He drew Sandy’s brain and the tumor location on the tissue paper covering the exam table, which we tore off and saved and had a good laugh about later] … More on what he said tomorrow or the next day, it’s getting late…
We then met with Daphne - a great nurse administrator - at the surgical admitting office. She also explained how the surgery day on Monday would go, step by step. She also gave us confidence with her knowledge, warmth and sense of humor. Then a meeting with the director of anasthesiology, and learned how Sandy will be put under, and brought back afterward, for the surgery. Tomorrow we meet with the Oncology staff to talk about possible chemo treaments. But they won’t know exactly what the course will be until after surgery.
So lots of meetings, questions and forms today. But it was a good day and meeting all the people involved instilled us both with a strong sense that "this is the place." All of the people we have met here at Stanford have been incredible, on every level. Sandy feels she is in the best possible place to fight this. Which has been reinforced by even all the great hotel staff people, and our sweet waitress at a wonderful Chinese restaurant (best Chinese food we’ve ever had, thanks to all the nurse’s recommendations) who, after innocently asking us why we had traveled to Stanford and got Sandy’s smiling "to have brain surgery" reply, gave us a big box of fortune cookies for good luck. By the way, Sandy’s fortune cookie read… "Being aware of your fears will improve your life." Yes indeed, I’d say we’re there…
Sandy wanted me to thank everyone for all the love and support coming her way. We rode that wave down here and continue to feel it. I thank you as well. Keep it coming.
Please send us a note if you would like to by clicking "comments" link at each post. Just let me know if you would rather it be private to us and I won’t post your comment for all to see. If your comment is already posted and you don’t want it to be, let me know via comments link.
Good night and love to all,
Welcome… This is Dan, Sandy’s husband. I’ll be attempting to update this blog daily as Sandy prepares for and undergoes surgery on the brain tumor that has become active again. This seemed like a good way to keep friends and family updated and also share comments that we receive. If you would like your comment to not be published, just let me know. Go to Sandy’s website journal at sandybeardsley.com to read about her journey in living with a brain tumor since 1999. Chapter 18 is her latest entry.
Thanks for all the love and support.