An Anniversary

Meg's brain surgery was on December 14th, 2009.  Elspeth's Facebook post has upstaged me so effectively that I will say no more, other than to note that Meg continues well, exactly as noted in recent posts.

Life is now normal enough that I have (after a several year lapse) written a Christmas letter, grandly titled the "Taylor-Holmes Annual Report 2010", which you can download here, should you wish.

In that letter I rashly promised a website with extra news and photos: it has lots of photos and a bit of extra writing.

Much to be thankful for

We are most thankful that:

First snowy day

• Meg's MRI last Monday showed no cause for concern.  Let's keep it that way.
• Our son Nick flew out from NYC for Thanksgiving last Tuesday, and made it safely to our house, despite our snowy, icy, hilly streets. He took the (new) light rail from the airport to downtown and walked from there.
• That same snowy day Andrew made it safely to his oral surgeon's appointment, thanks to a ride from a passing firefighter on his way home (for which, many thanks).
• Our aging (and recently very sick) cat is doing much better now, thanks to a trip to the kitty Emergency Room. She's eating up a storm and back to her normal self.

Thanksgiving 2010

• We had a pleasant but quiet Thanksgiving meal with Nick, who has now returned to NYC but will be back for Christmas, for which Meg has already begun to prepare.

Christmas cakes are baked way before Christmas

And we continue to be thankful for the excellent and very caring treatment that Meg gets from the doctors, nurses and clinic staff, and for all the support and advice that Andrew gets from the patient & caregiver support groups.

Still chugging along

Meg's health continues pretty much as it was last month: she's generally OK but somewhat tired. The end of her clinical trial is now within sight (2/2/11), though we do not yet know what treatment (if any) she will have after that.

The first picture shows another minor milestone - it's Meg returning from performing in her first concert since returning to her orchestra this Fall. If you'd like to hear them, the main performance will be on Sunday, October 31st at  3PM at St. Mark's Cathedral in Seattle.

The other picture is of Meg, her sister and their mother on the beach in Santa Barbara. We've just returned from a visit (together with her brother and sister) to her parents, where we celebrated Meg's birthday. More pictures here, should you be interested.

We're starting to think about holidays and celebrations: Nick has his tickets to visit us over Thanksgiving, and both kids have tickets for Christmas, so Meg is starting on the Christmas cake this weekend. She'll also be celebrating the date of her surgery (December 14th) as "Recalled to life day".

Another uneventful month

Weather had continued fine, so we've been out biking and hiking, as shown here (click to enlarge).

Meg continues as last month: pretty fit, sometimes rather tired, often has some pain while eating.

Upcoming events:

• A trip to Santa Barbara to visit Meg's parents
• An MRI just before Thanksgiving.
• Nick will come out from New York to spend Thanksgiving with us.

That's it: no news remains good news!

Post Labor Day update

Meg's health continues as it has these last couple of months - pretty good, but with some tiredness, and still some pain while eating.

The neurosurgeon was not concerned about the jaw pain, and Meg continues to find ways to work around it, by avoiding eating anything that's too hard or too thick.  Elspeth, the fish biologist, has declared that Meg is "gape limited".

Meg was concerned that these jaw issues might impede her clarinet playing, or might be exacerbated by them, but it does not seem to be an issue.

She's been practising her clarinet diligently, and has happily rejoined her clarinet choir and community orchestra, both of which have just restarted after a Summer hiatus. She was very pleased with her playing with both groups, and they were all very happy to see her among them again: she got a round of applause from the orchestra when she walked into the rehearsal room. (The picture shows her cataloging and organizing music for the clarinet choir.)

MRI & vacation

First the important news. Today we learnt the results of Meg's recent MRI: NO evidence of any regrowth of her brain tumor. She's so healthy and stable that they may not send her for another MRI for 3 months. Picture shows the neuro-oncologist showing the results to Meg.

Now the vacation news. Encouraged by the previous backpacking trip, we set off to the North Cascades for a week's camping and backpacking vacation. First picture in our set of photos shows where we went. We carefully watched (and believed) the weather forecasts for the area, which paid off. We got three glorious sunny days for our backpacking trip north along the Pacific Crest Trail, and returned to a campground near the trailhead, at about 6000'.

We were not surprised that the weather had deteriorated when we woke up on the 4th day. We went for a day-hike south on the same trail that day, and were treated to low clouds, high winds and occasional tiny hail. On our return to the campsite  we found mighty winds, a semi-collapsed tent and a temperature of 38 degrees, as measured by our new car! We retreated to the valley for a final night's (warmer) camping, then did a lovely loop hike on the way home. We'd backpacked in the area with the kids some years ago, and it was great to re-visit such spectacular trails. Meg was noticeably more tired that normal when back-packing, but was her normal vigorous self when day-hiking. I guess this means I'll have to carry more of our stuff next time!

Link to the pictures.

Backpacking

Meg's medical life revolves around infusions every 2 weeks,  rounds of chemotherapy / doctor & physicians' assistant visits every 4 weeks and MRI's 2 months out of 3 (don't ask!). This last week she had NO medical appointments, the weather finally improved, Andrew got his teeth-cleaning rescheduled, and we got to go off on a backpacking trip, precisely 8 months after she was admitted to the hospital.

We drove to near a pass about 75 miles east of Seattle for a 2 night stay in the wilderness area. It was midweek and we saw very few people. It was a good first trip as there were 2 lakes on the trail: we aimed for the further & higher one, but were happy to stop at the nearer one when it became clear that the 2,000 foot elevation gain with the packs was all that we were up for. As we approached Surprise Lake, a forest ranger appeared (as if by magic) and led us to the most wonderful campsite on the shore of the lake.

The next day was gorgeous, we were fully recovered, and we greatly enjoyed a not too strenuous hike up Surprise Mountain, which we'd been admiring from our tent door! We had a relaxed, and solitary, lunch on top, admired all the surrounding mountains, and returned to our tent in time for dinner. Meg had fun playing with her Buff head-scarf, finding imaginative ways to keep the voracious and numerous msoquitos at bay. 

On the 3rd day we packed up and hiked back to the car: we both greatly enjoyed the trip and were relieved that Meg was able to do so well, despite her ongoing chemotherapy. We're now deciding where to go and what to do in the next medical-free week in a couple of weeks.

You can see some pictures on this Facebook album.

Health news; assorted family visits

Health: Meg continues to be in excellent health, with occasional chemotherapy-related fatigue her main symptom. This month's checkup at the hospital included a functional MRI, which showed that the part of her brain that controls speech is not in the area where the tumor was - Dr. Jost will be able to operate again, if the tumor ever regrows. Next checkup, with a regular MRI, in 3 weeks.

Andrew met with Dr. Foltz, head of the Ivy Center for Advanced Brain Tumor Treatment, and one of his associates, to learn about their molecular characterisation of Meg's tumor. They sent him away with several scientific papers to read  and with the good news that, from what they can tell,  Meg's prognosis is very good and she should continue to respond well to treatment.

Family:  June and July were very busy for us:

• Elspeth stayed with us and did fish research at the Hutch, and worked at Trader Joe's.
• Nick & boyfriend came out for a wedding and stayed for a couple of extra days.
• Meg's sister and her 2 daughters visited for a few days - Meg's brother came up for dinner one day.
• Elspeth's girlfriend visited over the July 4th weekend.
• We went camping and hiking with a friend of Andrew's from graduate school and his wife. 
• Meg's parents visited us for several days, and we were joined by Meg's brother and sister (again) so we had the whole family together. Everybody had a great time.
• We bought a (new to us) car from a departing colleague, and donated our most ancient car to a colleague.
• They've now all left - we're enjoying the peace and getting ready to go backpacking.

Photos of the assorted family comings and goings await you.

Medical (non) news

Meg's progress continues to be uneventful - her medical care is in the very capable hands of her neuro-surgeon (Dr. Sarah Jost), her neuro-oncologist (Dr. John Henson) and their physician's assistant Jennifer Wulff.

While we were back east for Nick's graduation we went to the National Institute of Health, and Meg was examined by doctors in the neuro-oncology branch:  a clinical fellow (Dr. Katharine McNicol, examining Meg in the photo) and the  department chief (Dr. Howard Fine). They examined her MRI's from Seattle, remarked on what a good job the surgeon had done, noted that she was probably the healthiest patient they'd see that day, and patiently answered Andrew's many questions. They invited us to keep them updated on her progress, and agreed to be available for consultation, should further treatment be needed in the future.

The Swedish Neurosciences Institute, where Meg was treated, has a brain cancer research and treatment center, the Ben and Catherine Ivy Center, which was the recipient of some of the proceeds from the recent brain cancer walk. Andrew went to a presentation by the director of the center, Dr. Greg Foltz, and met with him this week. Their lab is genetically characterizing Meg's tumor - the information may help guide us if a change of treatment becomes necessary.

On a lighter note, Summer had finally discovered Seattle - we're off to the mountains this weekend with a good friend of Andrew's from graduate school. We'll be hiking and getting fit for the beach backpacking trip that Meg is planning for August (after all her family visits Seattle at the end of this month).

No change, which is always good news

Meg continues to prosper. She's working, taking chemotherapy 5 days a month,  getting infusions [clinical trial] every 2 weeks, and just doing great. We're in a lull between visitors: Elspeth's girlfriend was here for the July 4th holiday weekend,  we go camping with a college buddy of Andrew's in a week's time, and then await the entire Holmes family the next weekend.

Minor milestones:

• It's now been 200 days since Meg came home from the hospital, as measured by bottles of daily vitamin pills.
• We took advantage of Elspeth's only weekend day off from Trader Joe's to go on a bike ride with her. We returned to the trail that we enjoyed during Meg's radiation treatments: her subsequent fatigue curtailed bike rides for a while, so it's good to know that she's returned to her former vigor.

Seattle Brain Cancer Walk, family visits

Many thanks to all of you who made donations to the Brain Cancer Fundraiser/Walk last Saturday, and to those of you who were able to join us there. A special thank you to the Seattle Philharmonic Orchestra, who were an official sponsor of the event, and an extra special thank you to the cello section, who came along and serenaded the participants.  More pictures here. (BTW it's not too late to contribute.)

Meg was very happy to experience everyone's support, and was very moved to see her fellow orchestra members there, walking and performing. She continues in excellent health and has started practicing her clarinet again, in preparation for  rejoining the orchestra this Fall.

The walk was just one part of a  busy weekend for us: Meg's sister and her two daughters were visiting from California, and her brother (and his partner) came up to join us for the evening. We enjoyed assorted Seattle attractions in assorted groupings, and all managed to get access to our (only) bathroom more or less when we needed to! We've now recovered, spent the week at work, and Elspeth is now enjoying a visit from her girlfriend for the July 4th weekend. Seattle's summer seems set to arrive right on schedule (July 5th).

Summer visitors

Meg continues very healthy: somewhat sleepy, no other symptoms, next MRI in August.

Lots of visitors, starting with our son Nick and his boyfriend Dan, who were here for a wedding, and treated us to an early Father's Day dinner - see above. Still to come (separately): Meg's sister and her 2 daughters, Elspeth's girlfriend, Meg's parents, Andrew's graduate school room-mate. August is open, so we're hoping to go backpacking.

Six months!

Meg's surgery was on Monday December 14th, 2009, six months ago today. She has made a remarkable recovery and continues to do just great. The odd symptoms early in the chemotherapy have resolved, and she now lives pretty much a normal life, other than some tiredness, monthly chemotherapy and infusions every 2 weeks.

We'd like to take this occasion to thank everyone who has been so wonderful to us:

• all the staff at the First Hill and Cherry Hill campuses of Swedish Hospital
  
• our colleagues who have helped us understand the treatments for Meg's disease
  
• all our friends with their gifts, good wishes and food.
• everybody who has donated so generously to the Brain Cancer Walk.

We'd like to send special thanks to Meg's coworkers, who collected money to help with whatever we needed.  We're happy to note that we haven't needed to dip into the fund yet. 

We've decided to donate half of that money to the Club Meg Team at the June 26th Seattle Brain Cancer Walk. Our hope and expectation is to donate the other half to the 2011 walk!

(Yes that was an underhanded way to remind you that it's not too late to donate to the walk!)

Seattle Brain Cancer Walk / Fundraiser

(reposted to remind you that the walk is coming up in a couple of weeks, and to thank those of you who have already contributed so generously. Since posting this I have toured the Ivy Center, and am very impressed with the work that they are doing: their research on brain tumor profiling may well help us choose appropriate treatments for Meg. 

Science types: here's a paper showing some of their work.)

From the Brain Cancer Walk website:

The 3rd Annual Seattle Brain Cancer Walk, hosted by Accelerate Brain Cancer Cure, will take place on Saturday, June 26, 2010 at Seattle Center's Mural Amphitheatre.

Founded in 2008 by a group of committed volunteers and families, the Seattle Brain Cancer Walk has raised over $400,000 for research, clinical trials and comprehensive care for brain cancer patients in the Pacific Northwest.

Proceeds will benefit organizations focusing on brain cancer research and patient care in the Pacific Northwest, including the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment at the Swedish Neuroscience Institute.  (this is where Meg gets her treatment)

People participate in the walk via "teams". A Seattle Philharmonic colleague (Carol) has started our team, named "Club Meg". You can contribute by:

• Becoming a member of the the team, and (optionally) getting others to sponsor you.
• Becoming a "virtual walker" of the team: as above but you don't have to turn up and walk
• By sponsoring an existing member of "Club Meg" (go here and click on their name)
• (easiest) by contributing directly to Club Meg.
• (we won't be hurt if you contribute to another team, or start your own team).

The walk is a 1/2 mile route at Seattle Center.  Anonymous contributions are quite welcome.

If you'd like to tell others about the Brain Cancer Walk, you can steer them to the Club Meg page via this short web address:

http://tinyurl.com/club-meg

or you can download,  print and distribute one of these posters.

Many thanks for your interest.
Andrew

Another encouraging MRI

(MRI cross-section of Meg's head, 6/8/10)

Meg had another MRI on Tuesday. We learnt the results during a visit with the physician's assistant today. The door burst open and Dr. Henson, Meg's neuro-oncologist, popped his smiling head in to tell us that the MRI looked just great. Meg's next MRI will be in August, and will probably be a functional MRI to locate the speech centers in her brain, just in case more surgery is needed in the future.

Meg continues to do well, but has been suffering from a cold for the last week (souvenir of our trip?) and has just about lost her voice. The physician's assistant was not concerned, but did postpone the next round of chemotherapy for a couple of days, to let Meg recover a bit. Now that Elspeth's here Meg doesn't seem to fall asleep so early in the evening as she did when it was just the two of us. I won't take it personally.

Elspeth is enjoying her science work with fish at the Hutchinson Center, and will have her first shift at the Capitol Hill Trader Joe's on Thursday.  Her cat seems to be enjoying his time in our basement, and doesn't seem at all fazed by frequent hissy fits from our cat.

We're awaiting quite a series of visitors: two friends of Elspeth's (and her girlfriend for the July 4th weekend), Nick and Dan for a wedding, Meg's sister and daughter and (we hope) Meg's parents and the sister again and other daughter. And a camping trip with a graduate school buddy of Andrew's. Then maybe time for a gentle beach backpacking trip?

Upstairs, Downstairs

Meg continues to soldier along, working at the lab during the week and in her backyard wildlife garden, pruning away happily, at the weekend. She continues to get tired and nod off in the evenings, but is fine again by the morning. She's been fighting a persistent cough for the last few days, and her voice has been reduced to a hoarse whisper.  We're hoping that this won't affect her next infusion on Wednesday.

The cutesy title to this post refers to our daughter Elspeth, who arrived here on June 1st for 2 months volunteer work in the Peichel lab at the Hutchinson Center, where Andrew and Meg work. The research she'll be doing will be part of her Master's thesis at the University of Michigan School of Natural Resources and Environment (common theme: fish!). She'll also be working 3 days as week at the Trader Joe's on Capitol Hill.

Elspeth came out with her cat, whom we knew (from previous experience) was not loved by Shannon, our elderly cat. A tall pet gate on the basement stairway seems to be keeping them fairly happily separate, Elspeth (and Joey) having returned to the basement bedroom (and anteroom) that she inhabited in high school. There's occasional hissing when the cats spy each other, but not much in the way of physical contact.

Ely arrived in time to celebrate her 25th birthday with us, has introduced herself to the local Trader Joe's, and starts work in earnest at the lab this morning. She's eagerly awaiting the arrival of her bicycle from Michigan, courtesy of Fed-Ex.

Memorial Day Summary

(As predicted in the previous post, we did have enjoyable visits to the Air & Space Museum, and to Mount Vernon [see 1st picture] before returning to Seattle).

It's now been almost 6 months since Meg's surgery (December 14th) and her health continues to improve.  She now has lots of energy, though she tends to doze off in the evening.  The odd set of symptoms that affected her a while ago (extreme fatigue, always cold, no appetite, food tasting overly sweet or salty) have gone away as mysteriously as they appeared, and we of course hope that they will never return.

We had a most enjoyable East Coast trip, have returned to work in Seattle and are eagerly awaiting the arrival of Elspeth (and her cat) tomorrow. She'll be here for two months while she does fish research in a lab at the Hutch (for her Master's thesis) as well as working at the Capitol Hill Trader Joe's (look for the young woman with the salmon tattoo on her arm).

Meg announced that she now feels perfectly normal, and has done so for the last week or so. She proved it by spending a couple of hours pruning trees in our backyard, when it finally cleared up this afternoon. She's also happy to note that she has NO medical appointments this week.

Coming soon to this blog:

• report on our visit to the Neuro-Oncology doctors  at the National Institute of Health (as promised before!)
• details of my visit to the Brain Cancer Research lab at Swedish Hospital, where Meg was treated - they're doing all the right molecular things to help plan rational treatments for brain tumors.
• details of the Seattle Brain Cancer fundraiser walk, at the end of June, which raises money for the lab at Swedish Hospital.

Vacation News

Despite having just finished 5 days of chemotherapy, Meg has had lots of energy, a good appetite and none of the taste oddities that have plagued her in the past. As a result, she's been able to enjoy our time with friends in Washington DC.

Our adventures in brief:

• Monday touristing with Nick in Philadelphia: Liberty Bell etc
• Train to DC to stay with Sue Holbeck, former colleague of Andrew's.
• Visits to assorted museums and galleries and sights on the Washington DC mall.
• On Wednesday morning we visited the neuro-oncology doctors at the National Institute of Health: details later, but everything looks great.
• Thursday: Sue took us on a field trip to historic Harper's Ferry: history, hiking, views (upper picture).
• Friday (after some touristing)  we went out to dinner with Sue and with Cathie Cooper, a college friend of Meg's, and then went to stay with Cathie.
• Saturday saw Cathie taking us hiking in the C & O Canal National Historical Park on the Potomac River (lower picture). After dinner at Cathie's home we retired to Cathie's living room, where Meg learnt the wonders of sports on the Wii!
• Today (rainy) we return to the Washington Mall, where Andrew can enjoy the Air and Space Museum without boring Meg stiff, as she will have Cathie for company.
• On Monday, Cathie is planning to take us to Mount Vernon, before dropping us at the airport for our return to the other Washington.

I've posted yet more pictures!

(minor aside: Meg's colorful Buff™headwear makes it very easy to locate her in crowds at museums, airports etc).

Nick's graduation

Nick, Zack (advisor), Andrew, Meg, Dan (boyfriend)

We all had a wonderful day at Nick's Ph.D. graduation in computer science at Penn today. Meg and Andrew flew to Philadelphia on Friday, poked around town on Saturday, spent a lovely Sunday afternoon watching Nick graduate, then had the rest of the day with Nick and Dan. More pictures here.

Toasting the graduate: the disembodied hand is Andrew's.

More good news

Meg had an MRI on Tuesday: she gets them every 2 months, with extras as dictated by the research protocol.  This one looked just like the one in May: no signs of any recurrence of the tumor! The physician's assistant and the neurosurgeon told us the good news, and the radiologist's report (which I was sending to the doctor at the National Institute of Health whom we're consulting when we're back there next week) confirmed and extended the good news.  The MRI of the tumor area looked just like the previous one, so I won't burden you with it. However the CD of images, which I was also sending to the NIH, let you play around with the assorted views, and I'm unable to resist sharing this image of Meg's head.

Talking of images, I'll be posting assorted pictures of Nick's graduation and of our touristing around DC on this photo page.

(this page proofread by Meg and posted at Sea-Tac airport, as we await our plane to Philadelphia and Nick's Ph.D. graduation)

Meg continues to slowly improve

Meg's endurance and appetite continue to slowly improve. At her most tired, she'd be snoozing on the couch immediately after dinner. These days she lasts till 10 PM or so, before she nods off, then goes upstairs to bed to read for 30 minutes or so. We've also managed to watch whole TV shows (typically "Foyle's War" from the library) at one sitting: previously used to involve a lot of dozing and rewinding!

She's also commented several times that her appetite is returning to normal: she actually feels hungry, and does not find all foods to be unpleasantly sweet or strongly flavored, as she used to. I've even managed to get a few triangles of Toblerone into her after dinner!

Another sign of improving health is the appearance of new hair on top of her head: after radiation and chemotherapy lots of it fell out, leaving her with a  very bald top and right side to her head (that on the left thinned greatly but never all fell out). The photo tries to capture the view from the top: the new hair is smooth and soft and Meg's had to endure my repeated stroking of it (note from Meg- now I know how a cat feels).

What we don't know is whether these improvements will persist, or whether they will be reversed by the next round of chemotherapy (it's 5 days on, 23 days off, and starts again on Wednesday). At the patient support group I'd asked about this and got conflicting answers: one patient reported such cyclic changes in vigor, another noted that each month was different!

We'll be going back east, for Nick's graduation and a visit to Washington DC, immediately after the chemotherapy cycle starts - please keep your fingers crossed on our behalf.

We had a pleasant weekend in Seattle, enjoying the sunshine while Andrew had his (pre-graduation) haircut, and Meg searched for books for the trip. On Sunday we enjoyed a performance by the clarinet choir that she's been a part of since its inception: Meg greatly enjoyed visiting with all the choir members after the performance.

Meg soldiers on

Meg continues to walk to and from the lab most days, and puts in a pretty full day there. She often comes home for a nap before dinner, and then tends to nod off while reading on the couch after dinner. Some days she has more energy, other days less - there's no obvious pattern.

The physician's assistant found no obvious reason for the fatigue: it's probably a result of the ongoing cycles of chemotherapy. There's some hope it may improve in a month or two. I recently attended a brain cancer patients/caregivers support group, where several people related experiences that confirmed the chemotherapy & fatigue connection. One patient related how she recently started slowly regaining her vigor after her year of chemotherapy ended.

Finding acceptable food continues to be a problem, as the chemotherapy-induced changes in her sense of taste render Meg acutely sensitive to sweet, salty or spicy foods. She's become an excellent monitor of the sugar that finds its way into all manner of prepared foods that you wouldn't think need sugar. I've just returned from a careful reading of a lot of food labels in the local co-op, bearing bread and crackers which I hope will be palatable to Meg. If not I will, at least, get an interesting change of diet!

Meg spent a few days at her parents' house last weekend, visiting with them and with her sister, who was also down there for a visit. They enjoyed chatting, walking on the beach and assorted family pleasures. She found the flying unstressful, which augers well for our trip back east for Nick's graduation, which will be coming up in a couple of weeks.

Keep Calm and Carry On

Saw items with this design in the Seattle Cancer Care Alliance gift store recently. Design came from a poster stockpiled by the British government for use after a German invasion, so was never used.

It certainly effectively summarizes Meg's attitude towards her disease. She continues to get very tired and often needs naps, and goes to bed early, but still manages to walk to and from the lab every day.  Her sense of taste continues to be very erratic, and often surprises us: she generally finds mild foods acceptable but unexciting and is slowly losing weight. We didn't do much very active last weekend, though we did get to have lunch in the sun on the back porch. High point of the weekend was an excellent dinner cooked for us by a long time neighbor and friend (René) at his lovely and airy house. He's off on adventures soon, so it's available for rent, if you're interested. Photo below and one of René preparing dessert.

We visited Meg's physician's assistant last Friday: no obvious explanation for the symptoms, but no great worry either  - chemotherapy patients often have such symptoms. Some thought that things might start getting better after this next chemotherapy cycle. It appears (to me) that she's not as tired as last week, but it's a bit hard to tell.

Yesterday (Wednesday) she had another mystery infusion, and started the second cycle (5 days out of 28) of the chemotherapy, which has now been raised to its highest dose. She seems to be tolerating it well, taking an anti-nausea pill and then the chemotherapy pill just before bed, with the hope of sleeping through any resultant nausea.

Next weekend Meg will be off to visit her parents in Santa Barbara, and then we'll be getting ready for out trip back east in May, for Nick's graduation and our visit to DC.

Music, visitors, fatigue

Meg's sister visited us for a few days last week: her son was visiting a possible university to attend next fall. He flew home, and Caryn stayed on for a few days. She enjoyed visiting with Meg, and they got to play their recorders together two evenings. Caryn noted a problem of flying with them: the recorders caused much consternation at security and were pronounced "evil-looking" by one security guard. 


More music came our way last weekend, when Keith Cheng (former lab colleague) was in town and entertained us on the piano, kindly supplied by Gerry Smith, Andrew's boss, who supplied lunch to go with the concert.

Meg was very tired after her sister had left - we initially thought it was the result of trying to keep up with Caryn, who's always very energetic. However Meg's continued very tired, very sensitive to the cold, and very lacking in appetite. We're not terribly worried (recall the lack of visible tumor) but something odd is going on, perhaps a reaction to her anti-seizure medication. We hope that the physician's assistant can hope sort things out during Meg's visit on Friday.

Despite all the fatigue, Meg is soldiering on (my own Energizer Bunny) and continues to walk to and from the Hutch most days, where she's back at work 80% time.

A minor milestone

Meg came home from the hospital with prescriptions for all sorts of medications. Various ones have been discontinued or refilled, but one bottle has stuck with us: the Vitamin B-12.

Tomorrow Meg will take the last pill from the bottle on the right, meaning that she will have been out of the hospital for 100 days.

She continues fit but still tires easily and unpredictably. Her sister Caryn (who was here for the surgery) is here with her youngest son on a college visit. She'll be here for several days, and kindly took this picture of the happy family.

Really encouraging news

It was with some trepidation that Meg and I went to Swedish Hospital for the MRI of her brain last week: it's the only definitive way to know what's going on in there! Dr. Jost had surgically removed ~ 95% of the tumor in December, and the carefully focused radiation treatments, with accompanying Temodar chemotherapy, had been designed to eliminate as much of the remainder as possible. Since then Meg's started the clinical trial of  infusions of Avastin/placebo every two weeks, and was about to start the first cycle of (the increased dose of) Temodar for 5 days each month: the research protocol stipulates an MRI every 2 cycles of treatment.

All our fears vanished when Dr. Jost charged into the examining room with a huge grin on her face, and asked us if we wanted to see some lovely pictures. She then showed us the MRIs on the screen, explained to us that she could see no evidence of any tumor at this time, and kindly allowed me to photograph them. Sensing that they'd finish up here, she pulled up an equivalent view from the day before surgery.  As you can see, both images are transverse sections of Meg's brain: Dr. Jost chose these views both to show the tumor at its largest, and to include the eyes (white circles at the top) to orient you. Views are as if you were standing by Meg's feet and staring up into her head, so left is on the right, and vice-versa.

You can't miss the obvious 2 inch diameter tumor on the right side of the brain in the "before" image, and you'll immediately see that there's no trace of it in the picture taken last week. Note also that the bulk of the tumor had pushed the brain center-line way over the mid-line, but that everything has returned to its proper location in last week's picture. My dentist kindly admired these pictures when I showed them to her [OK, and to everyone else] on my iPhone, and told me that the remaining little cavity where the tumor used to be is called a crypt. Dr. Jost was very impressed with how well Meg is doing and sent us on our happy way.

Meg's overall health continues to improve and to impress everyone. She tolerated the doubled dose of Temodar with no ill effects, and continues to do well at work. She still gets tired in the evenings, and typically goes to bed early, but is up and raring to go by the next morning.  Any lingering doubts about her health were dispelled this weekend when she:

• went on a 20 mile bike-ride on an unpaved trail in the Snoqualmie Valley: we had lunch on a spectacular old wood railroad trestle over a rushing creek.
• played her clarinet for half an hour, having received the OK from the doctor.
• did the hard part of figuring out our taxes.

We're looking forward to traveling back east for Nick's graduation in Philadelphia this May, and to our visit to Washington DC after that. I'll take the opportunity to drag her round all the museums & galleries that I used to enjoy when I lived in Baltimore, and we have an appointment with a doctor at the National Institute of Health to discuss which of the many clinical trials available might be most appropriate for Meg as needed.

Week with Elspeth, then Meg returns to the lab

Elspeth (known to her friends as Ely) spent a week with us, and visited a lab at the Hutch where she's planning to do research for her Master's project this summer. She also found time to get together with a couple of friends, and hang around with Meg.

Friday was a lovely day, so I (Andrew) took the day off work, and we went for a trip to the Olympic Peninsula, by car and ferryboats. We drove the length of the Hood Canal, a long convoluted arm of the Puget Sound, and enjoyed sunshine, wind & mountain views and stopped at places we've been driving past for years. Here are a few pictures to entice you to visit there.

Meg returned to work on Monday, having been away for almost exactly 3 months. She'd been doing some science from home, but felt it was time to get back into the thick of things. While she'd been away, her colleagues had been doing some things for her, but also seemed so confident in her return that they'd been neglecting some of her lab duties. So she spent a lot of the first day playing catch up, as well as chatting with colleagues she hadn't seen for a while.

She's planning on working about 80% time, and is still finding out how much she's really up to. She's been getting stuff done, perhaps more than she should, and has been rather tired in the evenings. We drove on Monday, but she walked to and from the lab on Tuesday and Wednesday. She continues to feel pretty good, other than the tiredness, somewhat frequent headaches, and an aggravating itchiness over much of her body.

Next week Meg will have an MRI of her brain, visits with doctors, an infusion of her Avastin/placebo (clinical trial), and then starts the first 5 day/month cycle of her oral chemotherapy: it's twice the previous dose but she gets to take it at night, with the hope of sleeping through any side-effects. The freezer full of donated meals continues to be invaluable, especially after tiring days at the lab: many thanks again to all!

(click on pictures to enlarge & admire)

Comings and goings

Radiation finished 2  weeks ago, and Meg's in the middle of a 4 week "vacation" from chemotherapy, which starts again (at a higher dose, but only 5 days/month) in 2 weeks. So she was well rested and recovered when our "children" turned up to visit. She's still somewhat tired, balding, and suffering from assorted smaller complaints (itching, disturbed sense of taste, flaky skin) but is managing to enjoy life. She does some science, all the cooking, some relaxing, and is looking forward to starting back in the lab on March 8th. She greatly appreciates the prepared meals, supplied by colleagues, that wait in the freezer for the days when fatigue and hunger coincide. Many thanks to all!

Nick arrived Friday evening, despite lots of snow in Philadelphia, on his way to a conference in Los Angeles, where he gets to present his thesis work. He'll be getting his Ph.D. in May, and helped us make  plane, hotel and train reservations for our trip back to the East Coast. We'll spend the weekend with him, attend his graduation, meet his boyfriend Dan and explore a bit of Philadelphia. Then we'll take a train down to the Washington DC area and stay with a couple of friends. We're planning to visit assorted museums, galleries and other sights in the DC area, and will also be visiting the National Institute of Health for a consultation with the head of neuro-oncology: he'll be able to advise us about the best next-stage therapies for Meg, if/when that becomes necessary. Our two friends (undergraduate colleague of Meg, former graduate student in Andrew's lab) are also planning assorted other activities for us. On Monday,  Nick accompanied Meg to her latest (every 2 week) infusion of the drug/placebo, and then flew off to his conference.

Elspeth flew out here on Saturday evening (also battling snow) and is spending the week with us. We went out to her favorite restaurant on Sunday (Than Brothers phở on Broadway; see Wikipedia for description), stopped by Molly Moon's ice cream, and enjoyed assorted flavors of ice cream on our return home. Elspeth and Meg have been relaxing together at home, while I'm off at the lab, and they treated themselves to a Thai lunch on 15th Avenue today: better  Pad Thai than Elspeth can get in Ann Arbor. Elspeth's hoping to find a lab in Seattle where she can do the thesis research for her University of Michigan Master's degree, so that she can spend some of the summer with us.

In summary, Meg seems to be healing well and enjoying life and family, despite the inevitably harsh side effects of the assorted treatments she's received, and is hopeful that the upcoming rounds of chemotherapy will be as easy to tolerate.

Recovering, biking, relaxing

Meg has been relaxing at home after finishing her combined chemotherapy and radiation treatments: she starts chemotherapy cycles (5 days/month, higher doses) in mid-March. She's regaining her appetite, though her sense of taste has been affected by the chemotherapy. She's often got lots of energy, but some days she's very tired.

On Saturday we went for a 28 mile bike ride on the Interurban and Green River Trails: we're sticking to paved off-road trails for now. The Interurban Trail is straight and rather industrial, passing by motels, warehouses and factories (and under a freeway) but makes up for it with stunning views of Mount Rainier. We returned via the Green River Trail, which runs along the top of the levees that keep the meandering river in its banks. We'd forgotten that miles of sandbags had been used to raise the levees, due to a failing upstream dam. The trail was "closed" but still passable and being used by other cyclists, so we gave it a try. It was challenging at times, but we persevered and enjoyed the views and the sunshine. Late in the day we decided it was prudent to return to the Interurban Trail, and found the GPS & Google Map on my new iPhone to be a wonderful navigation aid!

Meg enjoyed a visit from her brother on Sunday, and is now looking forward to visits from our kids: Nick stops by this weekend for a couple of days on his way to a conference, and overlaps briefly with Elspeth, who'll be here for a week for her Spring Break.