Meg's social schedule

As you can see, Meg is up and around and busy organizing things. In other words, she's pretty much recovered from the surgery!

Nick leaves this evening, and Elspeth on Wednesday morning. We consult another neuro-oncologist on Wednesday afternoon.

After that we'll be relaxing over the holiday weekend, and would be happy to see you in small numbers. E-mail or call Andrew on his new iPhone (206-660-3592) and he'll see if he can use the phone and the calendar at the same time to set up good times to visit.

Meg's treatment schedule

• Today (12/28/09) Meg had a plastic-mesh mask made to hold her head still during radiation therapy. She'll be treated at the Swedish Cancer Institute, which uses Image Guided Radiation Therapy to precisely aim radiation at tumors.
• 12/28/09: Met with neuro-oncologist John Henson to talk about treatment. Andrew had spent hours looking at papers and government publications and had lots of questions, all of which Dr. Henson managed to answer.
• 12/28/09 Met with research nurse to (tentatively) sign up for a clinical trial, which adds Avastin (which inhibits the growth of new blood vessels) to the standard treatment of radiation therapy and chemotherapy with Temodar. 
• We will decide on the course of treatment after consulting on Wednesday with Marc Chamberlain, a neuro-oncologist at the University Hospital who was recommended to us by multiple colleagues. We'll also check in with her surgeon again before making a final decision.
  
  
• January 5, 2010: Meg starts a 6 week course of daily Temodar chemotherapy and 5 day a week radiation treatments. Side-effects of chemotherapy are expected to be mild, but she's expected to get rather tired towards the end of the radiation therapy. The clinical trial will, if she takes part in it, start half-way through the 6-week radiation period.
• All the staff we meet continue to be efficient, dedicated and open!

(There's more! Click on "read more"to see the rest)

Christmas Weekend

Meg & Elspeth at Myrtle Edwards Park

We've had a lovely weekend together, opening presents, cooking, eating, walking, visiting etc, as you may see in these pictures, should you wish. Meg continues to get stronger, surer on her feet, and generally fitter and happier.

What now? See upcoming post for a rough schedule.

Happy Christmas to all.

Thanks to Elspeth for lending me her camera. My camera died last night as I was planning this picture! Under normal circumstances I might have been annoyed by its demise (or of that of my laptop which died in the hospital), but I took it as just one of those things........

Christmas Eve

A quiet, domestic, normal day! We all got up late, thanks to Meg's easier pill schedule. The Christmas tree got yet more decorated. Meg navigated the stairs with greater and greater confidence, and sometimes even without hands!
In the afternoon we all walked the 5 blocks up the hill to 15th Avenue East, our local shopping area. This was Meg's first foot-only expedition since she got home: she went up to 15th by car a couple of days ago. She kept her head warm, and stopped alarming passers by, by using the Smartwool hat that Elspeth kindly brought for her.

She carried her hiking staff, but barely had to use it. She and Nick went shopping while Elspeth and I tried out a local espresso bar. Nick and Meg joined us and kindly posed for a picture in the giant mirror on the wall. The kids then went home with the groceries, while Meg and I scoured a few stores for stocking stuffers and other presents for the kids - our plans had been a little disrupted, as you might imagine.

Presents have been wrapped, Elspeth's Christmas bread is rising. We await a happy, unremarkable Christmas.

December 23rd, 2009

(A few more pictures)

Andrew got up early (5:30!) to take Meg's sister, Caryn, to the airport. He returned home for a leisurely breakfast, then enjoyed watching the family do everyday things: Meg wrapped presents and Nick dinked on the computer.

In the afternoon Nick went to the airport to pick up Elspeth, while Meg and Andrew went for a visit with the neurosurgeon. We discussed the pros and cons of various treatment options with her, in preparation for our consultations next week with the neuro-oncologist from the hospital, and also with another highly regarded neuro-oncologist, from the University of Washington. Dr. Jost, the surgeon, has kindly agreed to meet with us again after those meetings, to help Meg arrive at the best possible choice of treatment options.

Various scientific colleagues, especially Andrew's boss and a former graduate student from our lab, have been invaluable in helping us wade through the sea of relevant research information while we were busy in the hospital, and in getting Meg comfortable around the house. Glioblastoma is a fast growing cancer, with no "magic bullets" to cure it. Recent advances have made survival times better, and there's hope that the clinical trial that Meg may enroll in will make them even better. Andrew also talked to a scientist at the Hutchinson Cancer Center (where we both work) about a more experimental therapy that he's pioneering. We're considering it for use after the cancer recurs, if the therapy has been approved by then.

A nurse then removed all the staples from the incision in the side of Meg's head: one staple was very difficult to get out and required the joint efforts and brains of all the nurses in the office. Her hair is growing back, and we've got several hats to keep her warm and dry while out and about.

We returned home to find Elspeth snoozing on the couch, and we're now struggling to figure out which of our 3 silver Macintoshes is which. There would have been 4 Macs, but Nick was visiting a friend for the weekend when he dashed out to be with us, and hadn't taken his one with him.

We were also met by a lovely gift hamper from Meg's clarinet choir, which complemented a gift basket from Andrew's lab, and several soups brought over by Vicki Halper, Andrew's boss's wife. Many other people have kindly volunteered to help us, for which we are very, very grateful. We'll be fine while the kids are here, but are comforted to know that help will be available when Meg is undergoing her radiation and chemotherapy.

We now look forward to a joyful Christmas season with our family, and hope that you all do likewise.

Second day at home

(pictures from today, in case you're interested)

Meg has:

• tried out the new sit down shower facilities in the bath-tub
• relaxed during the Capitol Hill power outage
• gone out shopping on 15th Avenue for gifts for the kids' stockings. We figured that a head with a shaved side and a long stapled scar would be unremarkable on Capitol Hill.
• moved around the house without aid and generally had a good day. Tired, occasional light headache, but alert and happy.
• enjoyed a visit from Gerry Smith's wife, Vicki Halper, who arrived bearing soups.

Andrew has:

• got his new Mac laptop working
• continued dispensing pills at all hours
• scheduled visits with doctors, including a neuro-oncologist at the University, to get a second opinion about treatment options
• enjoyed a great day with his family
• dropped by the lab to pick up presents, and stayed for a therapeutic coffee break (thanks, folks)
• talked to a Fred Hutch doctor about an alternative therapy for Meg
• had a good nap!

Meg's first day home

Meg slept well, then spent a pleasant day around the house, mostly on the couch. Caryn and Nick went off shopping for assorted things for Meg. Andrew stopped by the lab to ship and pickup packages, and was surprised by a wonderful gift basket from the people in the lab.

Pictures of all of the above await the curious. Thank you all for your questions, concerns and sympathy. Meg is feeling better and better. We're all learning more about glioblastoma and the advances in its treatment.

When I first met Meg's surgeon, Dr. Jost, she cautioned me: "I don't want you spending all your time researching this on Wikipedia, but I know you will". She then warned me that the data there does not reflect the recent advances in therapy. She was right, of course!

Home, sweet home

Meg had a lovely night's sleep in her own bed, interrupted only by pills at midnight and 6 AM, administered by Andrew in his new career as a nursing aide. So many pills at so many (and varying) intervals that Excel had to be brought into play.

I'm sure she'd be happy to chat (323-5929) should you care to call.

Home from the hospital

Meg came come from Swedish Hospital on the afternoon of December 20th. She was very happy and we were very relieved. I (Andrew) managed to pick up almost all of her prescription drugs from our two local Walgrens. Curiously, 1 gm. sodium chloride tablets are not in stock and have to be ordered. Fortunate, because that's the only thing Andrew can supply form the lab. He weighed it out very carefully.

Look here for some photos from Sunday.

Saturday December 19th treatment summary

Assorted CT and MRI scans showed that Meg suffered from a large primary brain tumor. The tumor site was next to the brain area that controls left side movement and probably very near the area responsible, in a very left-handed person like Meg, for speech.

Meg deteriorated rapidly on Sunday, as the tumor continued to press on her brain stem, despite all the hospital staff's attempts to reduce the swelling with assorted very powerful medications.

On Monday morning Doctor Sarah Jost operated on Meg and removed >95% of the tumor without significantly affecting her speech or movement. The return of her normal personality and vigor after the surgery was truly amazing.

She was soon moved to a less intensive care ward, and then on to the regular neurosciences ward. She continues to improve, and has been passed as "ready to go" by the physical and occupational therapists. We're awaiting the doctor's permission to take Meg home.

We had a couple of very productive meetings with Dr. John Henson, the neuro-oncologist. Meg is hoping to take part in a clinical trial for the radiation and chemotherapy treatment of her glioblastoma. She will heal from her surgery for 3 weeks, then have 6  weeks of (5 days per week) radiation therapy and daily chemotherapy pills. She then goes onto a maintenance chemotherapy regime (5 days of pills, 23 days off) for a year. She'll be screened regularly for return of the tumor. The doctor expects very few side effects from the chemotherapy, though the radiation is expected to make her rather tired.

Nick and Caryn, Meg's sister, have been busy looking after us, and bringing in home-cooked meals for us all to share in her room.

The basics

Meg started feeling tired around Thanksgiving, while our son Nick (seen with her here) was visiting.

The following weekend she started to feel extremely tired and weak, and we both assumed she'd come down with the H1N1 flu. She stayed home from work, and I came home at lunchtimes to check on her. Sometimes she was better, sometimes worse. I stayed home on Thursday and Friday. By Saturday (12/12/09) I was worried, and took her to the Swedish Hospital, Cherry Hill, Emergency Room.

The ER doctor sent her for a CT scan of her head, just in case, and it revealed a very large mass in her brain. She was immediately admitted to the Neuroscience Intensive Care Unit, where she remained for several days.

I chose to go to the Swedish Cherry Hill ER because it was close to our home, next to our primary care doctors, and had previously treated me. It turns out that this happenstance led us immediately to precisely where we needed to be, the best neurological care in the Pacific Northwest, to where we would have been transferred, had we gone elsewhere.

Meg's surgeon is Sarah Jost, M.D.