Meg's surgery and recovery

Links to interviews about Meg's use of Assisted Dying legislation (aka Death with Dignity)

2014-08-29T07:39:00.002-07:00

12/11/15: Fred Hutch interview about Meg's cancer: youtube video
9/11/15. (very brief) Interview with British ITV News, prior to the House of Commons vote (it failed)

Next most recent (11/3/14) is this interview on CCTV, a cable TV news station from the Chinese government. Here is the text (and video) link:

http://www.cctv-america.com/2014/11/03/terminally-ill-woman-goes-through-with-physician-assisted-suicide

My segment: http://youtu.be/kvjxYrLsScw

I get to talk about the arguments in favor of Assisted Dying, and the flaws in the opposition's position.

The other video segment: http://youtu.be/g1wA4bmLzYY

CCTV America is the American division of CCTV News, the English-language news channel run by Chinese state broadcaster China Central Television. It is based in Washington, DC and manages bureaus across North and South America. The service employs a mix of American, international and Chinese journalists and produces Americas-based programming with a focus on Asia for CCTV News.^[1]

http://en.wikipedia.org/wiki/CCTV_America
Very informative was this long (nationwide) Canadian Broadcasting Company radio report from March 2013. Here's a printed version

http://www.cbc.ca/news/politics/how-20-years-has-changed-the-debate-over-assisted-suicide-1.1334158

and here's the 13 minute radio report; my bit starts at 10:00

http://www.cbc.ca/thehouse/2014/01/17/house-additions-assisted-suicide/
October 2012 Canadian TV Interview (~ 3 mins, and text) : http://bc.ctvnews.ca/how-might-doctor-assisted-suicide-be-implemented-1.989506
May 2012 NPR radio segment about the release of the statistics for WA use of Death with Dignity legislation in 2011 http://www.npr.org/templates/story/story.php?storyId=151900341
National Death with Dignity blog post http://www.deathwithdignity.org/2011/10/18/megs-death-dignity
Compassion and Choices video about their services http://compassionwa.org/about-us/ This is the group who aided Meg in her journey. I appear at about 3:30

Other links about Assisted Dying legislation;

A very comprehensive and cogent Washington Post opinion piece, from a former editor in chief of the New England Journal of Medicine

Here's a British "Dignity in Dying" briefing paper.

Other Ways to remember Meg

2012-09-04T22:10:00.001-07:00

If you'd like to remember Meg by donating to something other than (or in addition to!?) the Brain Cancer Walk (previous post), here are a few suggestions:

Compassion and Choices Washington helped Meg use the Washington Death with Dignity Act: it would have been almost impossible to do without their advice and the remarkable services of the volunteer assigned to us. Here's their donation page.
The National Death with Dignity Center is working to expand the services available in Washington and Oregon to other States. Our story was featured on their website. They would welcome your support.
I have found great comfort and support at a local grief support non-profit, The Healing Center of Seattle. They would surely welcome your support.

Seattle Brain Cancer Walk: September 22nd

2012-09-04T21:51:00.001-07:00

We had a team, Club Meg, in the Seattle Brain Cancer Walk in 2010 and 2011: Meg walked with us in 2010 but was confined to her bed in 2011. This year, rather than running our own team, I am inviting you to join me in supporting "Zeb's Bunch", a team run by a woman I met at our brain cancer support group. She's doing very well and she and her many friends will bring great enthusiasm to the event.

To go straight to my fundraising page, click here or to DONATE right now, just click here

Below is Elizabeth's story, in her own words:

As most of you know, I was diagnosed with a brain tumor on April 25, 2011. I am happy to report that after surgery, chemotherapy and radiation treatments, the tumor has not shown any signs of growth. Thankfully, for now, I am stable. I am back at work part-time and have been working on regaining my energy and strength. Thank you to everyone who has supported me and my family during these difficult times.

Once again, I am coming to you for help. On Saturday September 22, I am participating again in the Seattle Brain Cancer Walk so that I can give back to the Brain Cancer community that has supported me during my difficult diagnosis and treatment. Last year, we raised nearly $30,000.00 toward finding a cure for this awful disease and this year we hope to exceed that goal. I would love for you to join my team, Zeb's Bunch. My team page is here: http://community.swedish.org/page.aspx?pid=313&tab=0&frtid=904
Only 22,000 people in the US are diagnosed with brain cancer every year. This is HUGE event in every patient's life but the number itself is so small that Big Pharma currently does not have a SINGLE brain cancer drug in its pipeline - (excuse the cliche) an extremely hard pill to swallow when you are fighting this. But business-wise, it makes sense. In my heart I have accepted that it is up to me to do all I can to save my own life.

The money raised by this event goes directly to Brain Cancer research conducted by Dr. Greg Foltz. He is a dedicated, caring, very hopeful and brilliant doctor who I truly know is doing everything he can to cure brain cancer. I want to give him as much money as he needs to get this done!

Please join my team and then ask 10 friends to give $10 each - you are at $100 already! I know we can do this! If you can walk with me and my team, I would love to see you there. If getting up early on a Saturday isn't your thing, please consider making a donation. Everything counts in this fight.

Six month update

2012-04-15T09:13:00.001-07:00

Meg took particular joy in the unfurling of fern fronds, and often pointed them out to me. I have spread some of her ashes under each of the ferns that she planted in our backyard.

Meg died October 1st, so 6 months would have been April Fools' Day, which seemed inappropriate. But it was also the first Saturday in October, so 6 months brought us to Easter and Passover (and 1 year will bring us to our favorite small town parade, Granite Falls Railroad Days). The Saturday I spent on my first date since 1979 (hints below, details later) and on Sunday I attended a delightful lunch and a wonderful dinner!

I've been quashing the desire to share with you every little bump along my road to emotional recovery and every little misadventure in my attempts to take over the great variety of tasks around the house that I (blush!) took for granted, did not fully appreciate, and never thanked Meg adequately for. On the latter point I'll merely note that the taxes are done (Turbotax rather than Meg's #2 pencil), the grass is mown, the house is cleanish (Roomba!), I'm neither gaining nor losing weight, and I am eating my vegetables and fruit.

My emotional recovery is due in main part to the tremendous support and care I continue to get from all of you, and for which I can never thank you enough (without risking a run-on sentence). You may recall that the Swedish Hospital brain cancer caregivers' group transitioned into a widows' group, and that the widows graciously voted to invite me to join them. They support and encourage me, and demonstrate how life can go on despite what we had all been through. At the suggestion of a hospice social worker I started attending grief support groups at a local non-profit (the Healing Center). There I find support, understanding, acceptance and the realization that it could have been a whole lot worse (slim comfort but, sadly, true).

It's also where I found the date mentioned above, another recent widow. And that's enough to burden you with for now. I'll try and stay in touch occasionally if I see you actually reading this. You might care to mention to others that I've broken my long silence...

More memories of Meg

2011-12-05T04:51:00.001-08:00

Posing after Meg's last (?) performance with the Clarinet Choir

Slide-Shows

Clarinet Choir reception after November 20th concert
Reception after October 23rd Seattle Philharmonic Concert
Remembrances of Meg written at the receptions
Slideshow of Meg's life, shown at the receptions

Or just browse the galleries.

Videos

Nimrod, Enigma Variations, Sir Edward Elgar. Clarinet Choir
Jesu, Joy of Man's Desire, J.S. Bach. Clarinet Choir
Simple Gifts, Aaron Copland. Seattle Philharmonic
Short sample of Kesselgarden, the Klezmer duo who played at the first reception.
Another taste of Kesselgarden

Or just browse the videos.

Remembering Meg in words, music and pictures

2011-11-18T07:38:00.001-08:00

On the corner of the stage
during the concert

On October 23rd (her 58th birthday), the Seattle Philharmonic Orchestra remembered Meg during its Fall concert, by playing a piece of music that was very dear to us. That evening Meg's friends and colleagues hosted a self-catered reception in her honor at Fred Hutch.

This coming Sunday her fellow members of the Northwest Clarinet Choir will present a concert in her honor, featuring works that Meg played with the clarinet choir and was particularly fond of as well as an arrangement of a piece, Blithe Bells, that the choir commissioned in her honor. A reception, to which you are all invited, follows the concert.

Vicki and Jean hard at work

The October 23rd reception was masterfully planned and overseen by Vicki Halper, wife of my boss (Gerry Smith, who provided the wine) and much of the work was done by Meg's sister (Caryn) and mother (Jean), who came up for the weekend. All the rest of the hard work was done by our colleagues at the Hutch. Everything went wonderfully and we all had as good a time as we could, considering the occasion. I hereby thank them all for their efforts.

Below are links to sets of pictures that you might enjoy. Click on any picture in a set to enter a slideshow, and navigate via the onscreen white arrows which appear when you mouse over it. Clicking on the "slideshow" option on the lower left gives you a self-running slideshow, with larger pictures but without any captions I might have added.

Slideshows

See all the writings here

Here is the set of ~ 300 photos of Meg's life which was played at the reception. Photos came from Meg's mom, from our albums and from my computer. Meg was in great part responsible for the show, as she had made prints from the better of our pictures, and put them in chronological order, with great annotations, in a series of albums. It pleased me to see people enjoying the pictures, both in the cafeteria and in the lecture theater.
We provided poster paper and pens at the reception and, after Caryn's urgings, many people wrote thoughts and reminiscences about Meg. Here are pictures of each sheet and of each individual note. Many thanks to everyone for their stories and thoughts.
Finally, here are pictures of the reception, including shopping and preparations!
You are more than welcome to browse through the other photo sets on my iPhoto gallery. If you become my Facebook friend, you can "enjoy" even more pictures, including our assorted camping trips.

Movies

As noted earlier, I video recorded the Seattle Phil's tribute to Meg: here's a link to it. Details on the previous post.
The Klezmer duo that performed at the reception, Kesselgarden, features Carl Shutoff on clarinet, who was a very early member of Meg's clarinet choir, and who donated his services for the evening. Here's a brief video from the evening, and here's another one, and here's a link to their CD.

Thanks again to everyone for making this bittersweet occasion so memorable. I hope to see you at the Clarinet Choir concert and reception at 4 PM on Sunday Nov. 20th. at Woodland Park Methodist Church, 78th & Greenwood.

Meg's birthday cake from the reception, made by a Hutch colleague. A list of some
of her published protein structures, her name spelled out in amino acids, and a clarinet.

Clarinet Choir Concert and Reception to remember Meg

2011-11-11T08:00:00.000-08:00

A clarinet choir (no surprise) is a musical group consisting entirely of clarinets! The sound of the ensemble is often likened to that of an organ. Even unmusical Andrew has made that connection.

Meg was one of the founding members of the Northwest Clarinet Choir, and played with them from their inception in 1990 until her brain cancer diagnosis in December 2009. She rejoined the group in September of 2010 and played with them until 2 days before her 2nd brain surgery in late March of this year.

The choir's next concert is dedicated to Meg's memory and will feature pieces Meg has played with the choir, pieces she particularly liked, and an arrangement of a piece she selected for the occasion. The choir will also perform "Nimrod" from Elgar's Enigma Variations, which is often used to remember musicians. Meg remarked on its quiet, understated nature when she and I heard it at the memorial concert for George Shangrow. Meg and the choir performed on George Shangrow's live concert preview show on KING-FM ("Live, by George") a number of times.

As noted above, the concert is at 4 PM on Sunday November 20th, at Woodland Park United Methodist Church, 78th & Greenwood. Please join us for the reception after the concert for food, drink, chat, memories (and another chance to see the Meg slideshow or to write down your memories of her).

Meg served as the choir's librarian for many years

Meg's last command obeyed

2011-11-03T10:49:00.000-07:00

Our (outdoor scenes) desk diary was always central to Meg's very efficient running of our household.
Her last entry, for October 15th, was in her very clear (pre recurrence) hand and is a reminder to mail our property taxes, way before the October 31st deadline. I am happy to report that I obeyed, a mere day or two later than the 15th.
I presume she added this reminder as soon as we got the calendar, late in 2010: most of the calendar records her struggle to control her handwriting, as the growing tumor increasingly impacted her ability to control her left side. By the end the writing was barely more legible than mine!

The Seattle Phil remembers Meg

2011-10-31T21:13:00.000-07:00

The Seattle Philharmonic Orchestra, in which Meg had played clarinet for many years, remembered her at their October 23rd concert in Meany Hall by playing a piece by Aaron Copland. When they played it again, at their concert in Renton on the 30th, I made the above amateur recording, and got their permission to post it here.

It's entitled "Variations on a Shaker Melody", and uses the Shaker tune "Simple Gifts" which features prominently in Copland's score for the ballet "Appalachian Spring". As their conductor, Adam Stern, mentioned, the melody was played at our wedding.

A larger (and possibly less jerky) version of the video is available here.

Slideshow link and November concert details

2011-10-23T07:47:00.000-07:00

The slideshow from the October 23rd reception to remember Meg is now available online:

http://gallery.me.com/andrew_taylor#100262

(click the "slideshow" icon on the lower left of that page)

A reminder about the Clarinet Choir's concert & reception

On Sunday, November 20th, at 4PM, at Woodland Park United Methodist Church, 78th and Greenwood, the Northwest Clarinet Choir will perform its first concert of the season. Meg played with the group from its inception in 1990 until 2 days before her 2nd brain surgery. The concert is free, and will feature pieces that Meg has played with them, favorites of hers, and an arrangement of a piece which she nominated (when asked) for the concert. A reception hosted by the choir will follow, in the church social hall. From their announcement:

Hello Northwest Clarinet Choir Fans,
Please save the date of Sunday, November 20, 2011 at 4:00 p.m. for our next concert. We'll be dedicating this concert to Meg Holmes, one of our founding members who recently passed away after a 2-year battle with brain cancer. The choir will also be hosting an informal reception in her honor in the Fellowship Hall following the concert--everyone is invited.
Hope to see you all there!

Remembering Meg: Concerts and Receptions

2011-10-11T00:01:00.000-07:00

(link to blog homepage, to learn of Meg's journey.
Donate to Brain Cancer Walk, if you wish)

Seattle Times Obituary 10/16/11

Both of the musical groups in which Meg played her clarinet will be remembering her. Do join us at their concerts, and at the receptions which will follow each of them.

On Sunday October 23rd, at 3PM in Meany Hall, the Seattle Philharmonic Orchestra will perform its first concert of the season. As a tribute to Meg, the concert will include a brief excerpt from Aaron Copland's Appalachian Spring, which has special meaning for us, as explained in this excerpt from our wedding ceremony:

From our wedding text, Meg's handwriting

(I only recently discovered that Appalachian Spring depicts a wedding.) Tickets may be pre-ordered or purchased at the door.

That evening, Sunday October 23rd, Meg's friends and family will hold a reception to remember Meg. It will be from 6 to 8:30 PM at Fred Hutchinson Cancer Research Center, 1100 Fairview Avenue North. Park in the employee lot north of Aloha Street (map) and enter the Thomas Building (D on the map). You provide dessert, we provide the rest of dinner. Music by a Klezmer Band.

(click map to enlarge)
Enter "Employee Parking" from Aloha. Descend steps on north side of the lot. Enter building D at the blue triangle

On Sunday, November 20th, at 4PM, at Woodland Park United Methodist Church, 78th and Greenwood, the Northwest Clarinet Choir will perform its first concert of the season. Meg played with the group from its inception in 1990 until 2 days before her 2nd brain surgery. The concert is free, and will feature pieces that Meg has played with them, favorites of hers, and an arrangement of a piece which she nominated (when asked) for the concert. A reception hosted by the choir will follow, in the church social hall. From their announcement:

Hello Northwest Clarinet Choir Fans,
Please save the date of Sunday, November 20, 2011 at 4:00 p.m. for our next concert. We'll be dedicating this concert to Meg Holmes, one of our founding members who recently passed away after a 2-year battle with brain cancer. The choir will also be hosting an informal reception in her honor in the Fellowship Hall following the concert--everyone is invited.
Hope to see you all there!

Death with Dignity

2011-10-06T21:59:00.000-07:00

My wife Meg died on the morning of Saturday October 1st in the loving company of her brother, sister, son, daughter and husband.

Suffering from a disease that robs one of intellect and dignity, she had the option, as a Washington resident, to choose the time of her death. She used the provisions of Washington's "Death with Dignity" Act to hasten her death, while she was still able to converse with and understand her family members. (Oregon has long had a very similar "Death with Dignity" act, Vermont and Massachusetts are considering one).

Her family gathered on Friday and spent the day with her. She was much more alert and animated than of late and visited with each of us. Despite knowing that her death was the next day, we all slept well that night (I slept much better than for many weeks), showing us that we were prepared for her passing.

Social workers (she met privately with one from hospice and one from Swedish Hospital to affirm her decision) and the volunteer from Compassion and Choices Washington all remarked on her readiness (and that she had not been ready the previous week).

The volunteer from "Compassion and Choices Washington" showed immense skill and empathy in helping Meg and in caring for us.
Meg died peacefully and quickly, with no signs of discomfort. It was a remarkable end to a long struggle, and released Meg from what we all knew could be a long, distressing, undignified and inevitable end. Our preparations, the company of relatives, Meg's peaceful passing and the knowledge of her command of the situation all served to make her passing much easier for us all.

Thank you all for your advice and encouragement over these last almost two years.

Anyone interested in learning more about our Death with Dignity act could consult Compassion and Choices, could watch the documentary "How to die in Oregon" (HBO on demand through November 13th) or could ask me.

------------ Addendum 10/18/11 ------------

The recent proposed alliance between the Swedish and Providence Hospital systems has caused considerable concern regarding its possible impact on the availability of "Death with Dignity" help and information. Meg's hospital and medical care was all from Swedish, and her hospice care was from Providence. Both organizations provided truly first class care to Meg, each with a caring loving attitude that went well beyond the call of duty. Swedish's published policy allows their physicians the option of participating in "Death with Dignity" if they wish - both the MD's who aided us were from Swedish. Providence is reported to "not even allow staff to discuss or provide patients with information about" Death with Dignity. (Providence Hospice staff were extremely professional when I told them of Meg's plans.)

More information:

Seattle Times article on the merger
My letter to the editor of the Seattle Times
Q13 news story including interview with me!

Meg Holmes, 1953 - 2011

2011-10-01T12:35:00.000-07:00

Birthday, parents' house, 2009

Meg died peacefully late this morning, Saturday October 1st, 2011, in the loving company of her children, her brother, her sister and her husband.

An uneventful month

2011-09-28T12:27:00.000-07:00

Family dinner, Labor Day weekend

It's now 7 weeks since Meg started hospice care, and 5 weeks since I reported to you. Meg continues resting quietly and comfortably at home, being cared for by me and by her brother Gary, who lives with us during the week, and returns to his home in Olympia WA, about 60 miles away, at the weekend. A hospice aide bathes Meg 3 times a week, and a hospice nurse visits weekly to check in and to adjust medications, and is always available for phone consultations.

Meg now sleeps a great deal during the day, but is typically most active and happy in the mornings, during and after the hearty breakfast that she typically enjoys. She's unable to read or watch TV, and occasionally enjoys listening to classical music on her iPod: she requested quiet music, so it's mostly baroque music. It's clear that Meg's greatest joy, as shown by the way her face lights up, comes from quiet, attentive visitors. Several music colleagues have visited, in the mornings, and Meg has enjoyed their reports on Meg's community orchestra and clarinet choir, both of which are now reconvening after the Summer.

Our "children", Nick and Ely, visited over the Labor Day weekend, as did Meg's sister (Caryn), who stopped by with her partner Anton, on the way to the wilds of central British Columbia. Tony and Caryn will be returning today to report on their many adventures (hinted at in E-mails) and Nick and Ely will be joining us for the weekend as well.

Meg could not join us on the Brain Cancer Walk last weekend, so was represented by big photos held aloft (here are photos from the event). Your donations are still welcome and will be matched $ for $.
It's not too late to donate to Club Meg by clicking HERE, then clicking on "Donate to Support Us".

And here are photos from the last month (and the previous set, which you maybe missed).

Meg requested the smell of fresh-baked bread this morning!

Brain Cancer Fundraiser reminder

2011-09-16T00:17:00.000-07:00

Club Meg 2010 walkers

The Seattle Brain Cancer Walk is Saturday September 24th at Seattle Center, starting at 9AM at the Founders' Court
Meg's friends are walking as Club Meg. Meg doesn't have the energy to join us this year.
To join us on the walk, click HERE to register, but note that the $25 registration fee goes entirely to pay for T-shirt and overhead.
To support local brain cancer research and treatment (" 100% of the walk proceeds go directly to patient care and research."), donate to Club Meg by clicking HERE, then clicking on "Donate to Support Us". (Or click on a walker's name then on "Donate etc). Click on Andrew and get a bonus slide-show.
Andrew and Meg have added the money kindly donated to them by Meg's colleagues when she was diagnosed (so those folks are off the hook...).
Past walks have funded the social worker who is invaluable for Meg's care, and helped fund research which has helped with predicting Meg's prognosis.
Your donation will be matched $ for $ !

A long overdue update: start of hospice care

2011-08-22T00:43:00.000-07:00

Mid-June

As many of you have surmised, no news has (again) not been good news. Over the month of July the growing tumor progressively paralyzed Meg's left side and robbed her of hearing and sight on the left. She continued to adjust, with great grace and ingenuity, to her increasing disability, and managed to find ways to get up and down stairs, and around the house, with occasional stumbles and falls. By the middle of July she was having such difficulty with the stairs that we decided that she should live upstairs, sleeping and eating in our bedroom and using the guest room as a sitting room (our only bathroom is upstairs).

July 3rd picnic at friends' cottage

On July 16th she visited her lab (for the last time), to tie up some loose ends, with the gracious help of a graduate student. Helping her around was becoming more than I could cope with, so I enlisted the (long offered) help of Meg's brother, Gary, from Olympia. He arrived instantly and was invaluable to helping to get Meg to a doctor's appointment and an Avastin infusion on the 19th and to occupational and physical therapy appointments on the 20th, which taught us techniques to help her get around, and also fitted her for a wheelchair. Gary has been living with us during the week ever since, returning home at the weekends, and has been the most valuable helpmate that one could ever want. I could never describe all the caring things he does, nor adequately express my thanks for all his help and insights. He brought immense practical experience to our house, having cared for a disabled woman for several years.

TJ's finger-food is popular

The week of July 22nd to 27th saw another of our family merry-go-rounds with Nick, Elspeth and Meg's sister Caryn all visiting for overlapping periods (never more than 2 at once). A wheelchair and a commode were delivered and helped us to get Meg around, who was by then pretty immobile. Elspeth and Caryn helped bathe Meg in the shower, and found it to be very awkward, with her near total left-side paralysis, so I learnt the art of sponge baths!

The next week saw Gary and me taking Meg out for a doctor visit and an final Avastin infusion, made a bit easier with our own wheelchair and a handicapped parking permit, and we then had a couple of interviews with Providence Hospice of Seattle, and started using their home hospice service on August 8th. They've been helping us for a couple of weeks now, and their services and people have been universally as wonderful as we had heard they would be.

present bedroom arrangement

Meg now has a hospital bed, which (together with hospice staff's ongoing on-site training) makes life much more comfortable and safe for all of us. A nurse visits once a week, an aide comes to bathe and help Meg 3 times a week, and all sorts of supplies magically appear, as do medications (the latter by mail). We've had visits from social workers, who've gently started to prepare us for the times ahead, and we had an invaluable home visit from the superb Swedish Neurosciences social worker, who's helped us get all sorts of paperwork in order, and helped us start having difficult conversations about the future.

pills and breakfast

Thanks to all of this extra help Meg is much more comfortable, has rallied significantly, and has greatly enjoyed the two most recent visits from our children: Nick last weekend and Elspeth right now (till the 23rd). Nick, Elspeth and Caryn will do another of their family merry-go-rounds over the Labor Day weekend, so that might not be a great time for you to visit, but other times would! Meg sleeps a great deal, but greatly appreciates brief visits from well-wishers. Give me a call (206-660-3592) or an E-mail (tayles@jps.net) and we'll figure out a good day and time.

(finally, here are lots of recent pictures)

Visitors and outings

2011-06-30T17:33:00.000-07:00

Frequent pastime: video-chatting with relatives

Meg's increasing fatigue has greatly curtailed outings, so we have greatly appreciated all our house guests coming to us.
Our son Nick came out from New York over the Memorial Day weekend and will return with his boyfriend Dan for the Independence Day weekend. We spent most of the time with him just chatting, and quite a bit of time video-chatting with relatives (Meg's parents, her sister Caryn and our daughter Elspeth). This was a theme of the various visits and some of the relatives got to appear both on the Seattle and on the remote side of the chats!

Newest lab member, at Emi's party

We managed a couple of outings the next weekend. Saturday saw us at a going away party for Emi, a former technician in the lab who's presently cycling to Ann Arbor!

Jackie sizing up the job

On Sunday we enjoyed a concert by Meg's Clarinet Choir. Everybody enjoyed catching up with Meg, who had attended the first rehearsal for the concert, just before her recent second brain surgery.

Meg next enjoyed a visit from Jackie Liles, a member of Andrew's caregiver support group. Jackie kindly tided up our back yard with much more enthusiasm and skill than I ever could have, and also brought us some home-made soup. Her timing was impeccable, as Meg's mother (Jean) arrived that evening for a 5 day visit: brother Gary (from Olympia) was looking after Meg's dad in Santa Barbara, allowing Jean to visit us. Jean's visit overlapped briefly with a visit from Elspeth, who kindly treated us to her chocolate chip pancakes.

Bidding farewell to Elspeth, who'll be back late in July

Elspeth then returned to Ann Arbor, and we were visited by Cathie Cooper, a friend of Meg's from her undergraduate days, who was one of our hosts for our East Coast trip last Spring. We spent lots of time chatting with Cathie, comparing cat-rearing stories and swapping vacation stories and pictures. We greatly enjoyed all the meals that she made for us (some right away, some from the freezer after she'd left). Meg found all the visits rather tiring but very gratifying. I was overjoyed to see the happy smile on her face while she entertained our assorted visitors.

Cathie and one of her creations

Things to come: preview of upcoming posts

2011-06-30T12:24:00.000-07:00

It's been a month since I posted here. I always hope that "no news is good news" but that, sadly, has not been the case here. I'll update you over the next day or two with several posts which will (I hope) shape up like this:

The good times: some pictures and notes from the assorted visitors who stayed with us over a 3 week period, starting Memorial Day weekend.
I'll try and summarize the ongoing, unresolvable, medical issues of Meg's now growing tumor and of the large unhealed wound in her head.
I'll touch on how the growing tumor is impacting her life and her abilities.
I hope to end on a brighter note, with news of the July 4th weekend visit of our son Nick and his boyfriend Dan.

Another week goes by

2011-05-26T23:35:00.000-07:00

Not a lot to report. Meg continues to rest at home, with her constant feline companion, and with human visitors dropping by every couple of days, one of whom (Della, fellow wind player and lab colleague) got to keep Meg company during her Avastin infusion.

Not clear if the Avastin is doing any good (MRI at end of June will show that) but it doesn't seen to be hindering wound healing too much: a couple of people peered at the incision last Wednesday, and will decide when/if the next Avastin will be infused.

Meg stays at home, typically reading or snoozing on the couch, and making Shannon think she's gone to cat heaven. Her wound continues to drain, and her head continues to hurt, but she bears it all with her normal stoicism. She has little energy or enthusiasm for outings, but does enjoy visitors. She was particularly impressed by Andrew's boss (Gerry) and his wife (Vicki) who turned up on Saturday night with a complete meal, which they shared with us, then washed the dishes, tidied up and withdrew gracefully when they sensed that Meg was getting tired. Shannon continues to enjoy the box they brought the food in.

Assorted friends and relations are scheduled to stay with us: our son Nick for the Memorial Day weekend, followed by Meg's mom (Jean) , who will be here from June 8 - 12th and will overlap briefly with our daughter Ely (June 11 - 15) who will leave just before Cathie Cooper, a friend from Meg's undergraduate days, comes to visit. Cathie will be here from the 15th to about the 18th, and is promising to cook up a storm and fill our freezer.

They'd be happy to share Meg with you, should you wish to stop by. I go to the lab most days, except when I'm ferrying Meg to medical appointments, and often come home for lunch, so you might see me as well. Call us at home (206-323-5929) or Andrew's iPhone (206-660-3592) if you're coming over.

Medical news, as I noted, is ongoing chemotherapy, probable Avastin and an MRI and appointment with the neuro-oncologist on June 20th to see how things are going.

More difficulties

2011-05-19T08:52:00.000-07:00

Relaxing together by Lake Washington. Unsolicited photo taken
and shared by kindly fellow sunbather

Following Dr. Jost's April 25th wound revision, Meg seemed to be healing well, and Dr. Gottlieb (plastic surgeon) was very pleased with the initial results when they saw her on April 28th. However an MRI taken that day showed significant tumor growth and Meg was put back on the Temodar chemotherapy: most of the specialists we have consulted give that a good chance of still working.

The repaired wound, however, subsequently started to open up and ooze, as the original one had, and May 10th saw Meg returning to the operating room, fully anesthetized, for Dr. Gottlieb to perform a much more extensive wound revision. The hope was that the wound would heal rapidly and allow the Avastin antibody therapy to be restarted. (Avastin acts by preventing blood vessel formation and hence inhibits both tumor growth and wound healing). The various experts are, to be honest, divided as to whether Avastin will continue to work for her. Recall that she was in a clinical trial and received Avastin from the start - doctors have seen few such patients, so there's very little track record to guide them.

Morning after 2nd wound
revision: time to go home!

The wound, although well sewed up, continues to ooze and not heal, and Meg's energy level and mental state (memory, mostly) continued to decline, giving concern that the tumor was continuing to grow. The doctors reasoned that the threat of tumor growth was greater than that of wound failure (which they can do something about) and sent her for another MRI this morning. The results show further tumor growth and she will restart her (every 2 week) Avastin infusions on Thursday. An MRI in a couple of weeks should show whether the Avastin is indeed still able to contain the tumor.

Fellow sleepers. Meg's dressing
keeps reminding me of this.

Meg has very little energy, and naps a great deal during the day, but is alert and happy to see visitors between naps. Our children and Meg's mother will be visiting (separately) over the next few weeks. Her brother from Olympia visited us last weekend: he'll be traveling to Santa Barbara to look after Meg's father while her mother is with us. He's had extensive experience helping with chronically ill people and is eager to do whatever he can to help out here.

Seattle Brain Cancer Walk will be on Sept. 24th

2011-05-05T13:40:00.000-07:00

Details on their webpage. Many thanks to all of you who participated last year. (Pictures from last year). The patient and caregiver support groups, funded by these efforts, have been immensely valuable for Andrew. Your efforts also helped fund the microarray analysis of Meg's original and recurrence tumor samples, which are continuing to help guide our thinking about treatments.

The Clarinet Choir's team for the walk is http://community.swedish.org/netcommunity/NWCC. They welcome all-comers to join them.

An unexpected procedure

2011-04-26T07:58:00.000-07:00

Meg has continued to feel tired and unwell, with her head aching, and the incision from her March 22nd surgery has never fully healed. The incision has been draining on and off: the medical staff have looked at it on a couple of (weekly) visits but have never been that worried.

The drainage increased last Friday (don't all medical changes happen on a Friday afternoon?) and Meg spent the whole weekend holding kleenex to her wound, filling multiple waste baskets. We went to the doctor's office on Monday for a checkup and they decided it was time to do something about it.

The plan was to promote healing by roughening up the edges of the wound and sewing them together. This was something more than an office procedure, but something less than full-fledged surgery in the operating room with an anesthesiologist, so it took the staff a while to find and outfit an appropriate room. Despite the local anesthetic, the procedure was very painful. The surgeon was very pleased with the outcome and saw no actual signs of infection in the weeping wound: always a worry.

Meg is spending the night in the hospital where, because of the concern about infection, she is in isolation and is confined to her room. Unfortunately (or fortunately), because she's been a patient there several times, we were fully experienced in getting her comfortable and fed, despite all the bureaucratic hiccoughs of a large organization! The hope is that she will come home today, that the wound specialist will sign off on her wound on Thursday and that she will be able to restart her chemotherapy soon (and that the upcoming MRI shows nothing alarming).

UPDATE: Tuesday AM: she's now resting quietly at home.

A radio show (on Shakespeare's birthday) reminded me that, if there's one thing that we're doing here, it is not "killing the spirit of love with perpetual dullness".

SHAKESPEARE SONNET 56
Sweet love, renew thy force; be it not said
Thy edge should blunter be than appetite,
Which but to-day by feeding is allay'd,
To-morrow sharpen'd in his former might:
So, love, be thou; although to-day thou fill
Thy hungry eyes even till they wink with fullness,
To-morrow see again, and do not kill
The spirit of love with a perpetual dullness.
Let this sad interim like the ocean be
Which parts the shore, where two contracted new
Come daily to the banks, that, when they see
Return of love, more blest may be the view;
Else call it winter, which being full of care
Makes summer's welcome thrice more wish'd, more rare.

Still slowly healing

2011-04-20T23:37:00.000-07:00

Sister Caryn (holding a picture of young Andrew), Meg and brother Gary

We had a pleasant and talkative weekend with Meg's siblings: Caryn for 3 days, Gary for one overnight. Gentle strolls, movies, meals, spirited arguments (Meg sat out on those).

Meg continues to hurt and rest, but is slowly getting a bit more lively and is (maybe) using fewer pain pills. The physician's assistant was happy with the healing of Meg's wound, and will check it again next Monday, prior to giving the go-ahead to restart chemotherapy.

Meg has enjoyed visits from a couple of friends:
Danielle and daughters bought over comfort food (South African Milk Tart), Sally stopped by this evening for a long chat about the adventures of our respective children and left us with several healthy treats from her company.

Meg's looking forward to a gift tomorrow from a new store that's bound to serve something compatible with her still very painful jaw muscles: Yogurtland!

Progress continues slow

2011-04-12T20:13:00.000-07:00

Meg's neuro-oncologist wants to put her back on the chemotherapy she was on previously but was concerned, at our visit last Friday, that her wound might be infected. She's been put on antibiotics, and her surgeon and assistant, at our visit today (Tuesday) were happy with her healing, and didn't see any signs of infection. She'll finish the antibiotics and return next Monday for a ruling as to when to restart the chemotherapy. Meg's sister is visiting this weekend: should make the time till the next medical appointment speed by!

Meg has been in considerable pain, and has found both eating and sleeping to be difficult: the surgeon noted that both problems were expected after a second brain operation, chemotherapy and radiation, and that Meg's progress was typical. In the last few days Meg's managing to rest more during the day than she did previously, and last night she managed to sleep the whole night without having to get up for pain pills, something she had not previously managed. We knew that recovery would be harder this time, but we hadn't realized quite how hard. She continues to be stoic and determined, as you would expect of her!

One very minor triumph: I was wracking my brains for a suitable dinnertime treat for Meg - something thin enough and soft enough for her to be able to eat without a struggle. I realized that English "After Eight Mints" would be ideal, and recalled seeing them in stores in Seattle in recent memory. I scoured all the stores I could think of and found none. Salvation: an English colleague about to return from a trip home asked me what I needed from the UK, and Meg is now the proud owner of two boxes of eminently edible English treats. Thank you, Janet!

Recovering slowly

2011-04-05T23:41:00.000-07:00

Gentle weekend stroll

Meg's recovery from her second surgery has been significantly slower and more painful than it was for the first surgery. She's been having more difficulty eating and sleeping, because of the increased pain. Dr. Jost, at our visit today, noted that this was pretty typical, was not concerned, and expected that Meg would continue to improve over the next month. At the end of the visit the (industrial strength) staples were removed from the incision in Meg's scalp. Next medical visit is on Friday, to see the neuro-oncologist: we expect he will put her back on the chemotherapy pills, which she tolerated very well previously.

eclectic care package from college buddy

Meg continues quietly resting at home, enjoying occasional visits, and is still busily working at not getting too busy! She's inventively finding ways to deal with the pain of eating, and with the very limited opening of her mouth: the kids' baby spoon has been brought into play. She's exercising gently and discovering, by trial and error, how much is good for her. She's not up to blowing into musical instruments yet, and is experimenting with other instruments around the house: the harp seemed too awkward, but the guitar may work out OK. She expects to stay home for ~ 6 weeks of leave, and then will experiment with returning to the lab.