End of January Update

Meg continues with her daily radiation and chemotherapy. Treatment is clearly doing something: hair falling out in great hanks, mostly on the right (tumor) side that receives the radiation. She's also noticeably swollen on that side of her face, which is perceptibly warmer than the other side. She's also pretty tired in the evenings and goes off to bed early, but finds it difficult to sleep through the night (due in part to discomfort in her head).

Radiation is weekdays only: presumably for the convenience of the staff, but it also gives Meg a chance to recover at the weekends . This weekend (for the first time) Meg was really tired on Saturday and snoozed most of the morning, but perked up in time for an afternoon stroll and errands around Capitol Hill. It suited me, as I'm still fighting the cold that laid me low for most of the week. By Sunday we were a bit more lively, and actively (rather than passively) sat around in the morning, before a shopping and strolling trip to Ballard in the afternoon.

On Wednesday she had the first of her mystery IV infusions, as part of the clinical trial of the early use of Avastin that she is part of (it's standard treatment for recurrent glioblastoma). She noted no side effects of the infusion, just that it took just about all afternoon!

Meg was eager to report, on Thursday, that she was half way through her 33 day cycle of radiation treatments, but the radiation people announced that day that she was really only due to have 30 treatments (and so had missed the celebratory half-way mark).

We're persevering, but would have to admit that the combination of my cold and Meg's fatigue has hardly made this the most fun-filled of weeks! On the bright side, Meg did enjoy a lunch with an orchestra colleague, and a walk (back from the radiation treatment) and a lunch with a science colleague last week, and has scheduled a stroll with a colleague and her toddlers this coming week.

The many hats of Margaret Holmes

As noted, Meg's hair is now falling out in great bunches (and turning up everywhere in our house). She's generally taking it well, and is happy to show off the great collection of hats she's ready to employ as needed. From top to bottom:

• hats on loan from Lisa from Eugene
• (the hat on the cat) A Smartwool hat from Elspeth, which is useful both inside and outside: not too hot, not too cold.
• Green, white and blue hats made by Meg from a pattern found online.
• A recently ordered gaggle of Buffs, found to be great for indoor wear.
• (not shown) The Seattle Sombrero for rainy days.

New York Times radiation article: not worried!

The front page of Sunday's New York Times featured an ominous sounding article, "A Lifesaving Tool Turned Deadly", that related cases in which people had been terribly maimed (and then died) after they had been irradiated, to treat their cancers, with machines seemingly identical to the one that irradiates Meg every weekday. I dutifully read the article, and was of course mortified to read the victims' stories, but came away unconcerned, for so many reasons:

• All the staff at Swedish Hospital act with an unhurried confidence, and clearly know what they are doing, and are given adequate time to do it.
• The radiation oncologist is young, enthusiastic, and very good at conveying to the lay public what is going on, and why, reinforcing one's confidence in his abilities.
• The staff who perform the radiation procedures are also unhurried and careful, while also finding the time to treat patients with care and consideration.
• The radiation staff did a "dry run" before the first actual irradiation, and regularly check their work during the procedures.
• The Swedish Cancer Center is a large and busy center, and clearly does these irradiations all the time: they know what they're doing.
• Our radiation safety officer at work (I'm on the radiation safety committee) told me, on hearing of Meg's treatment, of his great respect and regard for the competence of his counterpart at Swedish Hospital.
• Meg, you will recall, uses X-rays to study protein structures, and hence was familiar with, and very interested to see, the collimators, which shape the beam of X-rays and prevent them from irradiating other tissues. Problems with the collimators were the proximal causes of the injuries in the article. Meg learnt about the collimators, and reports that she can see and hear them doing their job during her treatments.
• She's now almost half-way through her course of treatment, and has started to notice swelling on the affected side of her head, and to see lots of hair falling out on that side. That led her to conclude that the radiation is going where it's supposed to, and not elsewhere, and that it's busy doing what it's supposed to: killing the rapidly growing cancer cells.

The article does report some terrible errors, but everything I see and learn about Swedish Hospital gives me confidence that Meg is in excellent hands there!

The article has some really cool graphics, that vividly convey how the machine delivers X-rays to the affected areas.

Weekly update on Meg's progress

Meg continues her weekday schedule: early breakfast, anti-nausea pill (seems to work), chemotherapy pill, walk to hospital, radiation treatment, home for a late lunch, then time to do scientific work from home before making dinner. She had lunch with former colleagues one day, and with a fellow clarinet player another day.

Treatment is proceeding as the doctors had predicted. The right side of her head, where the tumor was and where the radiation is aimed, is noticeably warmer than the other side, and is somewhat swollen. The hair on that side started to fall out at the weekend. Meg was cheered on by both these events, noting that they proved that the radiation was doing its job. She's definitely somewhat tired: goes to bed early, sometimes takes a nap, but nothing more than that. She reports little appetite, but still manages to eat OK. This coming Thursday she'll be half way through her course of 33 radiation treatments. The first IV infusion for the clinical trial will be on Wednesday.

This Saturday we went to the University Farmers' Market, where we met colleague Elizabeth Greene. We strolled together around Cowen and Ravenna Parks, an interestingly wild ravine in the middle of Seattle, which we'd been vaguely aware of, but had never really explored before. From there to Cedars Restaurant, where Elizabeth took a picture to prove that I (Andrew, normally behind the lens) do in fact exist. After bidding farewell to Elizabeth we went off in search of organizers for the new freezer (successful, more about that soon) and for cloth for Meg to make hats (fabric choices not great, she's ordered more Buffs to hide the balding side of her head).

Sunday saw us doing domestic chores, then going off to a performance by the Seattle Philharmonic Orchestra, the community orchestra that Meg has played her clarinet in for many years. She's not tried her clarinet out since the surgery, but did play a recorder for a while at the weekend: less strenuous to blow than a clarinet.

Next week brings..... more of the same!

ML King Day

Today was not a holiday for the radiation techs at Swedish Hospital, so Meg and I walked from home to the hospital for her radiation, and on from there to the Hutchinson Cancer Center, where we had lunch at Duke's Chowder House with Sue Amundsen, a longtime colleague of Andrew's. We then walked home via Broadway, total distance about about 4.75 miles. Meg walks to her radiation sessions most days, but this expedition did seem to tire her out rather more than normal.

She's now had 9 of her 33 radiation sessions (and takes chemotherapy pills every day): she's doing remarkably well, but is clearly starting to get a bit tired as the treatments affect her blood cell production.

Danielle Vermaak, a former colleague, her husband Chris and their daughters Maddie and Josie came over this afternoon: Meg and I were cleaning out the basement yesterday (to make room for the freezer, which arrives on Tuesday) and we realized that we probably wouldn't be using all those Legos ever again. A chance Facebook observation, a couple of E-mails, and Maddie and Josie were eagerly running off with all the Legos, and a selection of Barbie dolls and accessories to balance out their life experience. And they kindly left us with some beef from Chris's father's farm, to inaugurate the new freezer!

Meg confirmed her tired state by providing a warm and peaceful bed for the cat, after Danielle and family had departed. Meg is pacing herself well, and is managing to make progress on assorted lab-related projects. She went into the lab for a couple of hours on Sunday, to get some data and to help a lab member, but decided that was as long as she was up to for now.

Radiation and chemotherapy go on till Feb. 22nd, and the clinical trial starts near the end of January, with the first of her (every two weeks) IV infusions of Avastin or placebo. After a month's rest the chemotherapy resumes: a higher dose, but only 5 days a month. We are, of course, hoping that Meg will do as well with that regime as she has so far.

Can't send chicken soup? Try a rubber chicken

Lisa Young was a colleague of Andrew's in Eugene, and was his "best person" at our wedding.

She still lives in Eugene, and figured that if she couldn't send Meg chicken soup, she could send the next best thing, a rubber chicken.

Lisa's daughter, Chelsea, was visiting Seattle and turned up at our door with a lovely gift basket, with the aforementioned rubber chicken attached. The basket contained lots of other imaginative and useful gifts, including several hats. Lisa had undergone a craniotomy a few years ago (for Parkinson's disease), and is loaning Meg the hats that she wore while her hair was growing back. Meg expects that the chemotherapy and radiation may cause her to lose her hair, so the hats (along with the ones she's starting to manufacture) may be needed for a while.

Lisa's operation involved her being awake during her surgery. She'd described her experiences to us during a visit to Eugene a couple of years ago. I found that very comforting when Meg's surgeon noted that she might need to wake Meg up during surgery to assess which parts of the tumor could be safely excised. She didn't need to do that, and did remove ~ 95% of the tumor, with very minimal effects on Meg. Such surgery may be necessary if the tumor returns, so knowing of Lisa's experiences will continue to  be a comfort to us.

Some silliness

1) Mattel is running a survey to choose a new career for Barbie. There seem to be several folk movements to stuff the ballot box with votes for Barbie the Computer Engineer. May I humbly suggest that votes for Barbie the surgeon might not be out of place?

2) Meg was amused to see, in Thursday's New York Times, that her present hairstyle (full head of hair on one side, severely shaved on the other side) is actually terribly fashionable in some circles. She reports being shocked to learn that she is such a trend-setter.

Another wonderfully average day

I, Andrew, went to work at the normal time, worked away diligently (characterizing some chicken antibodies: did you really want to know?), then went off to pick up Meg after her radiation treatment. Got there in time to see her modeling the very svelte garb she gets irradiated in.

From there to Home Depot, where we very speedily purchased the chest freezer that several people had advised us to get, so that all the kind people who've been offering to bring us food can actually do so.

Then on to Costco, to fight the urge to buy lots of food to fill the freezer, which won't be delivered till Tuesday. We lunched at "Burger Madness", an interesting little restaurant that is right next to Costco. Their other branch, in Monroe, could be a stopping point on a bike ride this Spring. Great burgers, lots of fries to help Meg regain lost weight. She had to disassemble her fish sandwich to fit it into her (still not fully openable) mouth!

Then back to the lab for Andrew, and back home for Meg, who got to do some scientific data submission from home.  Yep, a nice normal day. Let's keep it that way!

4 weeks later

On Saturday December 12th I took Meg to the Emergency Room. The rest you know. The ability of modern medicine to diagnose and treat such serious problems is matched only by the body's ability to recover from them.

This Saturday we walked from our house down to REI, where Meg bought the bicycle-themed "Buff" that she's wearing as a hat in this picture, taken during her "stealth" visit to the lab on Sunday. She went there to pick up a laptop and other stuff to allow her to do some work at home, and ran into a couple of lab members.

Saturday, after REI, we stopped at a nearby Indian restaurant, where we enjoyed the lunch buffet: I was hoping to load Meg up with the protein that she'll need to repair the damage done by the radiation and chemotherapy. From there we marched back up the hill, and spent the evening enjoying the adventures of another member of the Holmes family (Sherlock) via the magic Roku box. The episode featured "the woman".

In brief, a pleasantly dull weekend. We need to be off to bed early, because the logic of the pill and radiation schedules require Meg to have finished breakfast by 7:20 AM. so as to be ready for her 11:20 radiation session. The new schedule lets her have lunch at a decent hour, and gives her the afternoon free to entertain visitors, or to work on lab projects.

No news is good news

Andrew went to the lab and had a full day there. He demonstrated a really old technique to a young post-doc!

Meg walked to and from her radiation therapy appointment, worked in the back yard, and then made dinner. She suffered no ill effects from radiation or chemotherapy, and wasn't noticeably tired.

She and Andrew watched a couple of old TV shows on the Roku gizmo that Nick got us for Christmas. We both stayed awake, proof that Meg's handling her treatment well.

A thoroughly boring day. Let's hope for many more like that. We can do without all the excitement of the last month.

(Andrew signed Meg up to be an author of this blog, so you may hear her side soon. She has, in fact, corrected this post. )

Tuesday: joining the clinical trial. Wednesday: treatment begins

Tuesday morning found us in the radiation oncology department of the Swedish Cancer Institute. Meg met the large imposing looking machine that will, for the next 6 weeks, be targetting X-rays at what remains (after Dr. Jost's surgical removal of 95% of it) of the tumor in her skull. Despite its large size, the machine can deftly spin around to target the radiation at the tumor. Check out the movie that's the first of the set of today's photos. The pictures also show the ingenious mask that holds Meg's head still, to allow the precise targeting of the X-rays. Tuesday was a "dry run" to confirm that everything was set up right.

We spent the rest of Tuesday morning with a research nurse who was doing preliminary work for the clinical trial that Meg was considering being a part of. We were still concerned that the possible benefits of the trial medication might be outweighed by the problems it entailed. We had consulted a research neuro-oncologist, and I (Andrew) had searched the scientific literature for data from the preliminary stages of the clinical trial, which had been at several hospitals. A scientist from one of the trials kindly called me and gave me valuable preliminary data. I got in contact with another clinical trial via a former colleague, who learnt of our problems via this blog, and kindly offered to help.

Click "Read more" to....read more!

Sunday and Monday

On Sunday we had our first post-Christmas visitors (an orchestra member had visited in the hospital and an orchestra/clarinet choir colleague soon after Meg got home).

Liz Ellis (on left) brought her new love, Brenda Grant, to meet us. Liz was a long-time member of our neighborhood association, and was very active in a whole slew of activities, until she moved away. Brenda was a software geek who upped and retrained as an MD, and is now serving the community of Okanogan in eastern Washington. We happily picked her brains about assorted medical puzzles (such as why neurologists keep asking you who the president is) and signed her up to be a resource for when we go camping in her part of the state next Summer.

Monday: Andrew went off to work, but drove home to give Meg a ride to the radiologist's office for a baseline MRI for the clinical study she may be part of. The rain abated and Meg enjoyed the walk home. She's hoping to go to her radiation treatments by bus or on foot.

On Tuesday we expect to spend most of the day at assorted medical appointments. Interviews, blood draws, form signing, EKG for the clinical trial; a radiation simulation for the radiation treatment. At the end of the afternoon we're off to the surgeon's office to grill her about various questions that have come up after meeting with the neuro-oncologists.  Thanks to the doctors, and to several colleagues who've been investigating for us, we will then be as educated about the clinical treatment options as we're ever liable to be. We will then have to actually decide upon which treatment is best for Meg: if we mull it over till after midnight, it'll be the perfect day to have an epiphany.

Happy New Year

We enjoyed a lovely Christmas with the "kids", who are both now safely back at their respective graduate schools (Nick: Penn, Elspeth: Michigan). We've also been getting out and about and Meg's being experimenting with headwear - to hide her scar for now, but with the expectation of at least temporary baldness after radiation and chemotherapy. The above pictures shows her trying out her new Seattle Sombrero™ on a trip to the pharmacy to pick up her first 30 days' worth of medication.
Yesterday we went down to Madison Park to visit with Joseph Farah, a former labmate of Andrew's, and his wife Isabelle and delightful toddler daughter Julie (cute baby movie; slow download!). While in Madison Park Meg visited the fabric store to check out fabric for hats she's planning to make for herself.

Meg has leapt back into action, and the house has returned to its normal clean and tidy self (I did the more strenuous cleaning, under supervision).  She's got lots more energy and we get out most days, even in the drizzle. We're looking forward to a visit this afternoon (Sunday) from a fellow "neighborhood activist"and her girlfriend, and are generally "clearing the decks" before  Meg's radiation and chemotherapy treatments, which start on Wednesday. Meg hopes to get to those by herself, by bus or foot, and I'll be able to return to work (but be available at a moment's notice, thanks to new iPhone). Our often challenging urban lifestyle is finally paying off:  house, lab and the two hospitals are within about 1.5 miles of each other.

PS to blog neophytes: you can click on any picture to enlarge it. 

These ones are from my new iPhone, and are somewhat fuzzy. 

Better pics when new camera arrives this week!