Friends, On January 12 Dea was interred at the Hillcrest Cemetery on Bainbridge Island. Peter and Ricky teamed up to write a beautiful obituary to announce her passing and honor her memory in local news outlets. That piece summarizes some further details and so I’ve pasted it here…
Dea Mckibben Perry passed away on Jan 8, 2022 at the age of 68. After 5 years battling cancer, she passed away with grace, and without fear in the presence of her son Ricky and husband Peter. Dea was gifted in many ways, but in particular her creativity and ability to form meaningful connections with others stand out for those who knew her. Throughout her life Dea’s style shined through her pursuits; Art director, floral designer, food stylist, ceramicist, painter, gardener, party planner. Kindness and grit are other words that come to mind when folks think of her. Dea chose a “green burial,” wrapped in linen, covered in roses, and surrounded by burning incense with Scottish bagpipes playing as she was buried by the hands of her husband and son. The devoted nurses and doctors at Seattle Cancer Care Alliance were tireless in her defense. Her neighbors and friends eased her path with support, nurturing meals and demonstrations of love throughout her life. If in doubt of where to turn, or how to honor her memory, be guided by a simple prayer, “what would Dea do?”. A lively memorial celebration as befitting a Scotch-Irish lass will be held in the Spring. Details will be announced when they are available.
Peter and Ricky, you guys are inspiring. Let us know how and when we can support. Love to you.
Ricky, Dea, and Peter in the window box, January 7. Thanks to Dinah for photo.
Friends,
It is with wonder and awe that I write to observe the obvious fact that our sweet friend Dea Perry lived a big, bold, beautiful life — full of connection and creativity. It’s with relief that I write to report that her physical suffering has ended. And with grief I must report that Dea came to the end of her earthly life on the morning of January 8, 2022. She passed away with Ricky, Peter, and her cousin Missy by her side. By all accounts Dea’s last moments were full of smiles, foot rubs, and overflowing love.
Words feel hollow at the moment, but some parts of Dea’s last experience seem important to share – if nothing else, just to take stock of some gifts she offered right up to the end. For several days Dea had been saying that she felt ready for her next adventure. Ricky has marveled that she showed no fear at the end. Her courage was infectious, and the peace of mind that she projected was awe-inspiring. Thursday we sat in her window box pondering the magnitude of all this transition stuff, and I broke down like a blubbering goon. She waited for me to pull myself together, and then she coached: “Grief is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.” The words* were devastating, and comforting, and uplifting all at once. Right to the end she was taking care of blubbering goofballs like an unflappable teacher. Like a friend. With a patience that I did not deserve, and a smile I could not match she added “Your grief will pass. Hold onto the love.”
Many of us have said that Dea has fought her cancer like a warrior over these last couple years, and Dea had some thoughtful words about this. However true is that statement, she pointed out that some aspects of the fight might be easily forgotten or misconstrued. Sitting in her catbird seat, Dea reminded that she did not just battle cancer and then lose. With gratitude in her voice she pointed out that the battle gave her precious years and months that she would not have had otherwise. The treatments slowed a really persistent, pesky condition. She could not wish it away, so that fight was the best option available. It wasn’t easy, but the rewards were worth the effort and she expressed gratitude for the help of her medical team and every extra day she got to spend with the people she loved. I loved those appreciations, and I promised her that I’d log them in this shared diary.
Finally, Dea’s poise was extraordinary. She seemed truly to feel and appreciate the awesomeness of the remarkable life she had lived. She saw that her connection with friends and family were her greatest riches and coolest achievements. She did it. And she got it. She brought joy and beauty to so many times and places. And, in the end, this authenticity seemed to blossom as pure deep peace that she had done good.
For some time it’s been clear that the Dea photo project (below) was her study and reflection on all that stuff. The connection. The joy. The life. In the end it is also a durable prayer on all those things. For us. As we send love to Dea, remember Dea, and pray for Dea, may the smiles in this photo collection infuse the prayers and illuminate the memories.
Rest in peace, Dea Perry. We will always love you.
Peter and Ricky are requesting a period of quiet decompression. They’ll let us know when they’re ready for calls and visits, but they did ask me to send their biggest thanks for all the love that has been flowing their way. *That beautiful quote is from Jamie Anderson, by way of Trisha.
Ricky, Peter, and Dea have set up a beautiful Christmas tree at home. Dea is savoring a respite from chemotherapy and spending a bunch of time perched in the cool new window seat that Peter recently designed and installed in their living room. I call it her catbird seat. Ricky calls it “The Zone.” It’s the best seat in the house for a daily show that involves two bird feeders, one thousand birds, three pesky squirrels, and a persistent Australian gardener who sculpts little mounds of nirvana just beneath the window out of rich soil and eager plants.
Dea is also appreciating a sweet tide of communication from friends, which lifts all boats in a time of reflection. That said, she asked me to emphasize that her text channels are fully clogged, which makes it difficult to navigate time-critical logistics during the times when she is up and flying through a long to-do list. Instead of using text messages to contact Dea privately, please use email. If you don’t have her address, please drop a line using the form that is below, and we’ll hook you up. The comment section, below, is also a good way to connect.
Apart from the catbird scene, we are surrounded by blessings. The meal calendar is full, Dea’s photo album is packed with smiles, the holidays are upon us and, if you’re reading this note I include you in the proposition that we really have today. Carpe diem.
Please send me Dea’s email address (these requests are processed by humans):
Yesterday Dea received the results of her Tuesday PET scan. They were disappointing. When we discussed a plan for a quick Daily Dea update, she laughed that we should just come right out and say that this week has been “an unfortunate turn of events.” There you have it. She wanted to share an update right away.
Up to this point Dea’s treatments have been working to apply some brakes to the growth and spread of her tumors, but this week’s results reveal that the brakes have stopped working. The tumors have grown substantially in size and number, and they are extensively distributed in her liver, lungs, bones, and lymph nodes. Her medical team has outlined a couple options for going forward, but all of them point to a 6-month trajectory toward end of life. As we all know, those estimates are rough, and we don’t know how Dea’s spirit may bend that timeline, but she wanted you to know that this is the tenor of current conversations.
Dea is evaluating test and treatment options with her team, and hunkering down to give all of that thoughtful consideration with Peter and Ricky — who are with her now. There’s a lot to consider this weekend and she has asked for space and time to digest the news and map out her strategy for going forward.
She also asked me to a) re-re-reiterate her enormous gratitude for the heartwarming food that people have brought so conspicuously marinated with love, and b) send thanks for the pics and messages that folks have been leaving on the website. She is checking those frequently, and feeling the love.
Dea, I know I speak for many when I simply say that we love you, and we are with you.
I’ve been measuring the length of this month by the distance to Dea’s PET scans, which were long planned for “sometime in November.” Since she started her adjusted chemotherapy regimen to chase pesky new liver mets, this progress check has been anticipated for soooo long. But today is the day. As I write this, Dea is headed to “the tube” to be scanned. While her team succeeded in catching the tail end of November for the procedure, test results are expected in the first few days of December.
December? Yikes, I have let the meal train stall on the tracks. This morning I hastily updated the sign-up sheet for the holiday route. This stretch of the trip is shaping up to be action packed. While Dea learns about the results from this autumn’s chemo, and as she adjusts her treatment plan for winter, Peter is currently in the middle of his own radiation regimen, which truly tests a person’s fortitude.
Dea and Peter report that we’ll send a proper update after PET scan results materialize. Until then…
Dea. Peter. We are sending you heaps of love and, well, fortitude. Also prayers.
Meal calendar is here. The always growing picture collection is here.
I wanted to be on the water this summer. Takes me back to my childhood. Thank you friends who made that happen this year!
The stories that bring this circle together continue to unfold. As you might recall, back in July Dea learned that she had new breast cancer mets in her liver. After a merciful spring break from chemotherapy (for immunotherapy), those new lesions triggered another round of chemo, which started in August. The side effects from this summer’s prescription have been physically challenging, and Dea has pushed through it with remarkable grit (scribe’s prerogative — I’m not authorized to say that). Several times when things got especially gritty, her medical team stepped in with literal infusions of salts, sugars, and fluids. Those helped tremendously. And through all of that, the rest of her team (you) stepped in with figurative infusions of soup, salmon, and sailing (her primary wish for the summer, remember?). Heading into October it seems fair to say that it’s been a remarkable summer, indeed. Did sailing happen? Definitely. Did Dea’s summer chemo help to suppress some tumors? Maybe. She is working toward a series of scans to figure that out, and those scans are scheduled for mid-November. Update to follow.
And what’s all this about Peter? His docs discovered some cancer in his prostate. Pete is preparing for eight weeks of radiation therapy, which should start next month, and which means he’s also going to be in sustained treatment/healing mode for a good part of this winter.
These kids… How are we going to support them… Food gives me a plausible excuse to keep tabs on them, and so I have extended the meal train for the next couple months. Would you like to share the ride? The new sign-ups are here, and on that sign-up page I’ve outlined a new food strategy they are adopting to support serious health and healing through the winter. It strikes me as a fairly simple, healthy food strategy and I’m psyched to give it a go when our meal night comes around on the guitar.
Dea and Peter, you guys are going to rock this. And we’re going to feed you along the way. Watch this. Love.
Happy summer, friends. We’re overdue for an update, and the tests of the month are just now producing information worth reporting. You may recall that, after her CAR T trial, Dea had a pretty big collection of tumors that appeared to be cruising the status quo in her bones, but also a couple new ones that seemed to be emerging in her liver. Those liver lesions were mysterious… Were they independent new tumors? Breast cancer mets? Something else? Resolving those questions was an essential prerequisite to mapping the path forward.
Time on the water has been this summer’s coolest a) time in the present and b) connection to childhood.
This has been a heavy mystery to carry around through the summer, but it also came with some blessings. The break from chemotherapy, which started back in March, has continued through July. The business of managing complications from so many bone tumors did not stop, but a break from chemo has meant a break from so many side effects. During July Dea watched Ricky “launch” (her word, with signature emphasis) a new chapter with many milestones. New career, new colleagues, new dreams, independence, travel, apartment, and on and on. This was a fast stretch of the parenting river, and that ride has been sweet. Summer has also brought the gift of several invitations to boat with friends. Dea reports that time on the water has been the most delicious a) time in the present and b) connection to childhood. “Definite highlights of July.”
Sadly, the results of July’s liver tumor analyses are disappointing. They do appear to be metastases of her breast cancer, so things are still migrating and growing. Also, a summer spike in circulating ‘cancer markers’ punctuates some of those points. Her docs have proposed that they go back into their bag of chemotherapy tricks ASAP, and Dea has embraced that plan. It is expected that whichever chemo they select, the meds will extinguish the remaining CAR T-cells. And so the see-saw tips. Again. The team has kicked into high gear to select the next chemo, and get it rolling.
As Dea recounts the blessings of this summer to date, her stories get animated when she’s talking about the incredible food people have gifted, the photo memories people have uploaded, and the incredible good fortune of being surrounded by loving friends and family. I suppose you reap what you sow, my friend. You are quite the garden.
Heading back into chemo, I’ve extended the meal train through September, and I encourage everyone to keep the ever-growing photo collection in mind — in case you bump into an old drawer or shoebox full of memories. Dea has mentioned many times that photos from the pre-digital era are particularly fun to see (and thanks to all for shooting/uploading pics of your old prints… It seems all roads still lead to the digital simulacrum).
If you are willing to climb on the September meal train, the extended sign-ups are here.
Dea, here is wishing you all the smiles of August. In a remarkable place, with your remarkable people. The best of summer is yet to come.
Heading into last weekend, Dea and Peter met with the docs who are running Dea’s CAR T-cell trial. This was the meeting to review Dea’s 90-day post-treatment test results, and the results were mixed.
You might recall that, before Dea’s CAR T treatment, the trial team determined that her tumor cells presented lots of that MUC-1* surface glycoprotein — which is the target of their experimental immunotherapy. Her MUCkiness raised hope that Dea might be a particularly good candidate for the treatment in question and, upon reviewing last week’s test results, it seems there may have been some legitimate reasons for that optimism. Ninety days out, and with no chemotherapy during any of that time, it was encouraging to see that most of the tumors Dea brought into her clinical trial neither grew nor multiplied. However, one tumor in her liver turned out to be an exception. Over the past few weeks that one has grown in a concerning manner, and her circulating tumor markers have spiked pretty high. This is a disappointment.
Dea’s medical team has proposed a couple alternative chemo strategies but, unfortunately, both options portend mixed blessings: Either one might contain the new liver lesion, but each would also weaken the CAR T-cells that seem to be restraining her bone tumors. Dea wants to sort this out and answer a bunch of questions before selecting the path forward. What is the nature/etiology of this liver lesion? Why is it growing faster than others? What’s the full menu of treatment options, and what are the tradeoffs for each one?
Dea and her team are lining up tests and investigations to refine the treatment plan post haste, and it’s becoming clear that this phase will be a lot of work. She reports that, while she’s focused on those tasks, she’s loving the comments that people leave here on the site, as they allow her to stay focused on the mission at hand, and check in for communication when her schedule, pain-level, and energy permit. Thanks to everyone who’s communicating through the site.
Dea’s Photo Medicine Dea reports that that the photo collection that’s still growing here on the site is a special form of medicine for her spirit (she sends thanks to all contributors!). She particularly loves the shots that capture her together with dear friends and family and, during this chat, Dea wondered out loud: “wouldn’t it be cool if someone’s got a shoebox full of really old photos” with pics of childhood Dea, and images that capture her connections going even further back in time? Well, it doesn’t hurt to ask… If any of you have more photos that capture Dea together with her peeps, we hope you will keep uploading them into the photo album (instructions below). If anyone has physical printed photos that predate digital photography, those are especially precious. Please write to us here if you have some of those and you need help scanning or uploading those old treasures (dailydea@deaperry.com)!
The ever-growing Dea photo collection is just below. If you take a look, please note that the photos don’t all fit on one screen, so you have to click the “load more” buttons at the end of each batch (until I figure out how to fix that limit).
We’ll share updates when the dust settles and the game plan for going forward becomes clear!
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Click on any photo, below, to enter slideshow mode. Instructions for contributing photos are at the bottom.
Bringing Ricky to his new Seattle apartment! He flew the coop, but still visits frequently.
We’re overdue for a little news of Dea! However, I’m mostly writing to report that a proper update is still a few days out.
As you may recall, a couple months have passed since Dea’s experimental CAR T-cell treatment, early results showed hopeful signs, and her primary assignment for this spring has been to pour energy into healing the pesky bone lesions that have so complicated her spine. The plan all along has been to re-evaluate the impact of her immunotherapy at 30, 60, and 90 days, and so today Dea went “back into the tube” for some positron emission tomography. Her team will be running tests and analyzing results over the next few days.
In Dea’s telling, it has been a blessing to get a couple months’ break from chemotherapies this spring, in order to give that CAR T therapy a chance to work deeply. It has also been a blessing to spend the season in the Pacific Northwest, to be with Peter and Ricky, and to weave the love, support (and food!) of so many good friends into this chapter. While all of those blessings rule the moment, she wanted to send love and thanks. Looking forward to test results that should come next week, Dea says she’s “feeling hopeful.” But it’s so darned hard to wait for these updates.
Dea asked me to send her pledge that she’ll post updates through this website as soon as she has news from the week’s testing. Over the next few days she’s going to be focused on that process, and so she won’t have much headspace for texting, etc. — as much as she is holding everyone in her heart and in her prayers.
Dea, we are holding you in hearts and prayers, as well. Together we lean in and go forward. We’re with you.
The sunny shores of Lake Union have been home for the spring of 2021.
Last week Dea was reflecting on the intensity of her clinical trial experience, her two months away from home, and her anticipation of unpredictable treatment results. She commented that the road felt long and, whatever the results of the immunotherapy, she won’t be the same person when she boards that ferry to sail home. Well, that time has come. Yesterday Dea got her first assessment of the treatment, and tomorrow she sails home. She wanted to share an update with friends.
From the beginning, the research team had planned to check her response to their experimental treatment at ~30, 60, and 90 days post infusion. Because this therapy is completely new, of course, they didn’t know what to expect. However, they had reason to believe that if the treatment helped at all, it would probably take time. Here’s what they saw in her day-30 assessment:
1) Dea’s CAR T-cells seem to have taken the ‘molecular surgery’ beautifully. They accepted the genomic adjustments, they looked strong at reinfusion, and they have persisted nicely through the first month. There is a possibility that those hounds are hard at work. 2) The rapid growth and proliferation of tumors that we saw between December and March (just before the treatment) seem to have stopped. This is very encouraging. 3) While they can see that her old tumors did not grow or multiply, they can also see that some flurry of biological activity is going on at those tumor sites. The scans they’ve done so far don’t allow them to discern whether all that activity is her immune system doing the hard work of cleaning out tumors, or some kind of general tumor activity (but, did I mention that the tumors don’t seem to be growing or multiplying?).
Since we expected that any good outcome would take time, and since her current path shows signs of possibly heading in the right direction, Dea has decided to take in these preliminary results with cautious optimism. She has agreed to continue going forward with the clinical trial, and there are more blessings to count on this path. This week’s results invite the team to give her bionic T-cells some more time to work — and work without chemotherapy. More reprieve from chemotherapy is a really nice thing. This means that she can focus on managing the injuries/complications of her spinal tumors with less distraction from the extra hassles that come with chemo. God willing and the creek don’t rise, this may mean that she can continue to eat more comfortably as part of a broader healing regime (I’ve reopened a meal sign-up sheet for spring, here).
Dea P, I suspect that I speak for a small crowd when I say we’re really proud of you. Inspired. If the order of the day is healing, then here’s wishing you big scoops of that. May the lessons from this experiment portend great things for you, and great things for science. May your arrival back at home come with a deep breath and a deep smile.
Love.
I’m appending a copy of the now-familiar group photo montage, just because it continues to grow, and it may be good medicine for all of us.
Click on any photo, below, to enter slideshow mode. Click “load more” at the bottom to see the next page (and the next page) of photos.
Just about a month ago we wrote to ruminate on hounds, prayers, and smile-worthy pictures of Dea. At that time some new members of Team Dea (the docs from Fred Hutchinson Cancer Research Center) were preparing to infuse her with an experimentally re-engineered batch of her own immune cells. Some old members of Team Dea were preparing a collection of photographs to remind her of good times with dear friends during the clinical trial. And everyone was praying. That month and this trial have now transitioned into some of the most dramatic, prolonged, edge-of-seat waiting that I, personally, have ever experienced. Did those hounds hunt? Did those tumors respond? How the heck is Dea?!?
As you know, Dea was asked to move close to Fred Hutch for quick access to testing, monitoring, and emergency response — in case that should become necessary. She hasn’t been home in nearly two months! After a zillion appointments, a rotten stretch of chemo-sickness, one infusion, two transfusions, a dance with dehydration, and one somewhat-expected fever… things have settled into a groove for the home stretch of the trial. After those initial bumps, she got to take a much-appreciated break from chemotherapy. She has rediscovered the joy of eating. She has gained a little weight, she has gotten some rest, and she has wondered once or twice… what will be the results of this extraordinary experiment?
Because she cannot currently feel the results of her immunotherapy, she is left to wonder and wait with the rest of us: What will we see when Dea gets her turn with the instruments that produce those fancy positron-illuminated pictures of her old tumors? If those pictures tell a thousand words, what will they say? After a couple months of preparation and experimental treatment, Dea’s first ‘results’ scan happens tomorrow — with results expected toward the end of the week. And so she will soon have her first before-and-after pictures to start assessing the situation.
In some ways, a set of pictures was never more eagerly anticipated (the anticipation is running pretty strong). But, in some ways, this week’s PET-scan pictures should not overshadow the collection of photos that all of you have sent during this spring’s very long journey. In case you have not seen the growing photo collection that friends put together this month, you really have to check this out… A live feed of the Dea Connection Cam is embedded just below for your consideration (you may have to click “load more images” when you get to the bottom).
Thanks to all of you who uploaded photos! See if you can find your photos in the collection. See if you can find one where Dea is actually smiling. See how far you can scan down this page before you bust a grin of your own. And then hold onto a little bit of that grin for the next time you see Dea. It’s going to be a powerful week in pictures. While we wait for this week’s PET-scan pics this, below, may serve as photographic evidence that we’re all in the suspense of this week together.
Love to you, Dea :^]
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Click on any photo, below, to enter slideshow mode.
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Got more photos of Dea connection? Keep them coming!! You can add more photos to this collection by uploading them to this Google Photo Album. You can also sign Dea’s digicard here (her preferred mode of communication during clinical trial).
Dea has been infused! She had a little bit of fever through the process, but she seems to be recovering from that. She has been reading all of the messages that people have sent through the site (here), and she sent some words back…
“Done! Let’s storm the heavens with love that is meat to be shared. Let’s get this party started. Let’s be the one to help this trial get off the ground ~stand in the middle of the auditorium and thank each one of these researchers and scientists from the heart. Not just for me, but for all the others that follow. This is the gift I’ve wanted to give from the beginning, after receiving so much from so many. I’ve felt helpless for long enough. This is the best giving back. I’m ready. Blessed be.
Going to sleep now. Thank you one and all for the your love and support!”
The photo collection has been growing each day. You can check it out (and/or add photo contributions) here.
Thanks to everyone who has been sending photos – it is remarkable to see so many smiles, through so many years, with so many people.
You can always sign Dea’s digital card and send her a note here (her preferred mode of communication right now, she’s not up for chatting quite yet).
Dea at the starting line of her CAR T-cell clinical trial.
Hey Friends, If you’ve been following Dea’s medical adventure these past couple years, then you know it’s been a roller coaster ride. Through so many treatments teased and treatments tried, our heroine has sampled a vast menu of therapies designed to slow the activity of her metastatic breast cancer — which now resides in solid tumors throughout her spine and other places. As you know, after a person’s therapy card gets punched enough times, and the number of therapeutic options starts running thin, s/he may become eligible to participate in clinical trials of newly emerging therapies. And, as we’ve been reporting, Dea’s eligibility arose just around the time when some very compelling new treatments emerged and opened up to pioneering participants. I’m writing to report that Dea’s clinical trial has begun.
Over the last few years CAR T-cell immunotherapy has represented a small revolution in the treatment of some leukemias, showing unprecedented power to extinguish cancerous blood cells from circulation. The prospect of extending this technique to solid tumors has been tantalizing, but it’s also been elusive. In this technique, docs extract a person’s own T-cells, take them back the lab, and genetically engineer them to recognize certain tumor-specific antigens as targets for a high-precision immuno-cleanup. Interestingly, Dea’s tumors are particularly ripe with the very antigen that is targeted by the CAR T-cells in this new study. We’re taking that as a promising sign that this treatment is well matched to this pioneer.
Things are moving quickly and Dea is hanging on like a champion. Last week’s many tests and procedures culminated with collection of the immune cells that will undergo some of the most elegant molecular ‘surgery’ known to humankind. As I write today, Dea’s T-cells are most of the way through that process, they are being engineered to recognize her cell-surface tumor markers, and this Wednesday (tomorrow!) they will be reintroduced to her body. Whenever discussions get to this part of the plan/story I murmur to Dea and Peter, half under my breath, “release the hounds!” And she shoots a look that wordlessly proclaims she is deeply unimpressed by the joke. But I’m rooting for those little hounds.
SCCA/Fred Hutch team extracting and preparing the “liquid gold,” as Dea has said.
Wednesday is a big day. After so many miles, and so many bring-it-on efforts to try so many therapies, Dea’s path will pass into a pretty special realm this Wednesday. As she is reunited with her own carefully prepared immune cells on that day, she will also pass into the company of pioneers who’ve helped to pave the way toward scientific advancement. She’s stepping right into the critical phase of this really big experiment.
Dea hasn’t asked for much during this haul, but she has asked me to ask you: Would you…
Please pray for her on Wednesday, and through April, as Fred Hutch scientists will be watching her closely to see how her body responds to this experimental treatment.
Share any photos you may have that capture cool moments of connection with Dea (collection forming below!!). Your photos are, themselves, one inspiring form of prayer. And if you come up with a way to capture your prayers in your photos, send those along too! (Upload instructions at bottom of the gallery).
Stepping into this first week of spring, we are all wishing you a big scoop of renewal and healing, Dea P! Sending you love, strength, and healing during this month’s grand immuno-experiment.
Hoping these photographic reminders of love, connection, and prayer charge your batteries and feed those graceful little hounds every day.
Click on any photo, below, to enter slideshow mode.
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Got more photos of Dea connection? Keep them coming!! You can add more photos to this collection by uploading them to this Google Photo Album. You can sign Dea’s digicard here (her preferred mode of communication during clinical trial).
In our January update we reported that Dea’s docs have been evaluating an experimental immunotherapy for solid tumors. I quipped that dangling this news was “a bit of a teaser,” because so many details and questions were up in the air, and then I wrote “one way or another there will be interesting news over the next few weeks.” Well, these weeks have been productive, Dea was judged to be an exceptionally good candidate for the study, and a team of research-oncologists at SCCA/Fred Hutchinson Cancer Research Center has invited Dea to participate in their clinical trial. Things are moving quickly.
Dea is preparing to move to Seattle in just a couple weeks (Feb 28) so that she can jump into this trial with two feet. If you’ve heard of CAR T-cell therapy, you might already know that this new immunotherapy has been a tremendous breakthrough in the fight against some blood cancers. But the path to deploying CAR T-cells against solid tumors has been unclear. A few years back, a team of Massachusetts researchers found a cell-surface molecule that seems only to present itself on some tumors, and so it looks like a promising target for CAR T-cell therapies (one early news story is here). As it turns out, Dea’s tumors are particularly well adorned with this special protein (so trendy, right?), and so she seems like a particularly good candidate to try this experimental treatment.
Can this CAR T-cell therapy help cancer patients? Is it safe? What’s the right dosage? The only way humanity can ever learn answers to these questions is to undertake rigorous, thoughtful experiments. And if this therapy has benefits, Dea will be one of the first people on earth to see them, as she will be one of the first handful of people to take this ride. If you thought she was a pioneer before, prepare to reset your definitions.
The long and winding path to this point has been remarkable in so many ways but, the other day, Dea was marveling at the extraordinary chain of events that delivered her to the door of these researchers. After fates sent the Perrys to Santa Barbara last winter, and her spinal damage pushed her to consider kyphoplasty, she went searching for California kypho-specialists, where she met Dr. Stuart Hutchinson (nephew of Fred Hutchinson), who encouraged her to connect with the Hutch team back in Seattle. Then, when she returned to the northwest last spring, she changed her care team based entirely on that advice, and it turned out that they were just (at that moment!) initiating the first trial of this very new immunotherapy. As she recounted this string of unlikely events, someone commented that this sounded a bit like the “butterfly effect,” where a butterfly flaps its wings juuuuust so on one continent, and effects a chain reaction that produces a weather event ten thousand miles away. This piece of mathematical “chaos theory” can apply to any sort of weather event. Could be a sweet sunrise after a stormy night, with dreamy orange and yellows that almost seemed forgotten (just saying).
During her time in the trial, through March and April, Dea will be staying in the South Lake Union neighborhood of Seattle (near the clinic). Coincidentally, the current meal brigade stops right on Feb 27. If your culinary caregiving just won’t cool down in that timeframe, I noticed that we can send her credits for UberEats, which would allow her to order food from Seattle neighborhood restaurants that can deliver food right to her door! I found this pretty straightforward by going here, and simply entering Dea’s email address as the recipient (copy/paste deamckibben@aol.com). I tested this process (with Ricky’s help) and we confirmed that it worked perfectly.
Dea P, I hope you feel the chorus of prayers flowing your way from friends and family. This time it’s mixed with gratitude for helping to advance this cutting edge science of cancer therapy, which may ultimately help any number of us! Let’s plan to report on your science adventure here as it unfolds.
Happy New Year, friends. In our last installment of Dea news, our heroine was getting ready to begin a new type of chemotherapy, she had just been ruled out of a bunch of clinical trials, but we also reported that “they are still evaluating one CAR T-cell study.” Well, a couple holidays, a couple infusions, and a couple phone calls later, things are moving on every front. Dea wanted to share an update.
Dea’s new chemo began on December 10. Because it required frequent blood tests and infusions, she opted to have an infusion port surgically implanted just before that day. This whole process has been a big commitment, she’s been a trooper through the first several infusions, but the new medication wiped out her white blood cells rather quickly and rather thoroughly. For this reason, shortly before Christmas they had to hit pause on the chemo until she can reconstitute her immune system. At the moment our girl is resting hard, eating deliberately, and working to rebuild her immune system in order to reopen the chemo spigot, so to speak. Truth be told, it seems clear that the current balance of active cancer and active medication imparts some serious exhaustion, and some serious discomfort. So a little break from the meds may have had some upside during Christmas holidays.
Just when all those developments were shaking out around mid-December, Dea decided to get scrappy and push her team to resolve outstanding questions about that outstanding CAR T clinical trial possibility. When she nudged, the team started calling around, and learned that her tumor biochemistry does indeed align with requirements for one active CAR T trial in Seattle. What does this mean? The immediate path is strewn with questions about her immunocompromised state, the risks of CoViD 19, and possibilities for getting “the vaccine,” but the team is digging in to sort all this out. She’s got an appointment to meet with leaders of the clinical trial at the end of January and, you have to admit, this woman does know how to clear a path.
In many ways, this may be a bit of a teaser moment for an update. There is so much actively going on. So much to do. So much up in the air. But, the possibilities are also so enticing, and it is so much richer to share the journey than to walk it alone. It looks like, one way or another, there will be interesting news over the next few weeks. We can’t wait to see what happens, and also to share the tales.
With everything going on, I have just updated and revised the meal calendar, and I added some more dates for 2021. If you (ever!) want to review the dates that you’ve signed up for, or if you want to look over the new openings, there’s a link to the meal sign-up sheet at the top of every page at www.DeaPerry.com (this site!), or you can just go here. Also, with her immune system on the ropes, Dea is trying to keep her clan out of public places. If you are heading to the grocery store and have an extra minute, please consider pinging Dea to see if she’s got any grocery requests at the moment? This might just be a clever way to sneak in a little hello, and it might help them tremendously.
It’s heartwarming to connect with all of you who are part of this circle. Here’s to you, to the circle, to 2021, and here’s to Dea.
Friends, You might recall from our last update that, back in October, our heroine found herself at another crossroads – looking at a pile of treatment questions and decisions. The summer’s chemo regime was losing its charms, and its effectiveness. Dea’s medical team wanted to pause and explore the possibility of finding a clinical trial that might offer new avenues of treatment. A couple bone biopsies later, after scrutinizing Dea’s genomic biomarkers and scouring more scans than you can shake out of a surgical mask, a plan is emerging for the next phase of treatment. She wanted to share those plans with you.
The search for a clinical study mostly didn’t pan out. Dea’s team hasn’t found a study that matches her tumor genomics, but they are still evaluating one CAR T-cell study. While they investigate further, Dr. Linden has prescribed a new course of chemotherapy to put the brakes on a constellation of tumors that have recently grown in size, number, and activity.
This week Dea will begin her first intravenously administered chemotherapy. Of course there is a lot that the team cannot predict about this treatment, but the crystal ball is showing some details pretty clearly: The treatment will involve a bunch of driving back and forth to the Poulsbo infusion clinic, and a bunch of time receiving the drip. The weekly treatments are scheduled for Wednesdays, with separate Tuesday blood tests. Many people who use this medicine get nauseous, fatigue is likely, and some people get a minimalist new hairdo out of the deal. Dea won’t know the extent of those side effects until she gets full into it, but she is leaning forward to go in big, and go in strong (I’m not kidding, her let-me-at-it meter is running at redline).
It looks like this will be a heads-down gritted teeth slog. Dea is thinking that she won’t be in phone chatting condition, but she does welcome texts and emails. We’ll keep folks updated here and, if we see openings to socialize, we can flag those as well. Dinner support is a tremendous blessing (thank you cooks!), and if you ever need to see the current sign-up sheet, it’s here.
Dea Perry, your spirit is an inspiration and a pile of lessons. Our thoughts and prayers are with you.
Riding the roller coaster? Surfing the wave? Which metaphor for an update on another Perry plot twist? This was supposed to be the point in the year when those Perrys were going to pack up and move their hummingbird south to warmer climes — to conserve heat and recharge batteries for the winter. But, alas, new developments…
Over the last few days Dea has learned that the utility of this summer’s chemo regimen has run out. Last week she went in for a PET scan, and it revealed a bunch of new tumors. Too many to count. Her amazing team at SCCA/Fred Hutchinson Cancer Research Center is shifting gears and fast-tracking a search for a clinical trial that is well matched to her tumor physiology. This Friday they will take a bone biopsy, assess tumor genomics, and evaluate trial options.
Dea reports that a) if this is about surfing a wave, she “intends to stay on the board and hang 10.” b) She’s hoping that this week’s tests qualify her for an awesome clinical trial, but if that doesn’t happen, they’ve got other options. c) She is so grateful for the amazing food that people have shared and d) she is loving her watercolor class, and time with Peter, Ricky, and other friends. Our girl is turning a corner with a smile on her face, and preparing to get to work with her Seattle medical team. She wanted to share this news with all of you, and to send a big wintry hug.
Since we now know that the Washington branch of Team Dea gets her for the winter, I figured I would extend the Perry Meal Train sign-up sheet through the holidays! If anyone in the area wants to sign up for a dish, the new sheet is here. If anyone far away wants to sign up, I’m happy to team up and broker some sort of local takeout (you can just sign up, and then shoot me a note to conspire :^)
Dea P, we love you, and look forward to learning together what comes next.
PS: If anyone needs to see the old sign-up sheet for the rest of October, I’ve created a quick and crude archive of *old* sign-ups here.
Autumn? Monday and Tuesday I woke up to incessant foghorns from the Bainbridge/Seattle ferries. Even before I opened my eyes I knew that that other form of morning fog was back. The sort that occurs every year as the weather begins to turn, and that obliterates visibility on the water for the ferry captains. Wednesday evening I heard myself explaining the sudden sky full of August/September termites to an out-of-state guest. Harbingers of fall, and all of that. Then, just as my phone began to buzz in a pocket, a gaggle of geese flew loudly overhead. Honk if you love crispier-than-usual mountain spectacles, set against brilliant fuchsia clouds across the Olympic sunset. The phone caller was Dea. We were way overdue.
You may recall that right before she returned to the island in April, Dea was introduced to about a dozen new tumors that had just announced themselves, uninvited. And you may recall that immediately upon her return to the Pacific Northwest she undertook a wholesale chemotherapy reset with her SCCA medical team. The goal was to address those new interlopers and to outmaneuver some pesky side effects. I’m reading a little between the lines in Dea’s reporting but it seems that, on balance, that May – August chemo regime seems to have been a net positive proposition for the summer. Tumor markers behaved reasonably, and whack-a-mole side effects mostly acceded to carefully aimed blows. However, just as summer turned hard right, those damned side effects seemed to rear up and take over the party. And so Dea was just reporting that her docs have directed her to take a little break from this latest round of chemo, take time to focus on managing the side effects, and take a moment to regroup.
I stopped by the Perry ranch to discuss (pictured above), and we joked that these milestones seem to fall on the cusps of seasons. Dea laughed that this year’s seasons seemed to come all stacked up in layers — with the astronomical seasons having to share space with seasons of a pandemic, the treatment-strategies that only reveal themselves as seasons when they turn from one to another, and then all the other stuff of life that begins to look more and more seasonal when you find the space to see the broader pattern. Oh, you know we were getting into it over at Chez Perry when these notions reminded Dea of a poem that her Buddhist chaplain friend had just shared with her. And she suggested that we share this excerpt with all of you in the DP circle.
HOW SURELY GRAVITY’S LAW Rainer Maria Rilke
How surely gravity’s law, strong as an ocean current, takes hold of even the smallest thing and pulls it toward the heart of the world…
If we surrendered to earth’s intelligence we could rise up rooted, like trees.
Instead we entangle ourselves in knots of our own making and struggle, lonely and confused.
So like children, we begin again… to fall, patiently to trust our heaviness. Even a bird has to do that before he can fly.
Amen, sister. Thank you for that piece of perspective. Dea is hunkering down for this next season, in a handful of ways, and reports that she is feeling that heart of the world. And as I prepare a Perry dinner for tonight, I’m noticing that the we just finished the summer meal calendar! So I have posted a new one for September – October. When I begin to notice this broader pattern as a sign of another season turning, I have to smile at the community of it all. The way we have all come to share seasons in this tradition, virtually, with the Perrys and with each other.
How safe can you make meal delivery, Brian Danzig? You have set a new bar.
Dea caught word that some of us were resurrecting the meal train, and she just called to gush gratitude — and ask that I emphasize the depths of love and connection and appreciation that she, Peter, and Ricky are all feeling in this circle of heart. Somehow, her call reminded me of some photos she sent me a month ago, during a particularly safe dinner delivery. Near the beginning of August someone reminded the Danzig’s how important it is to suit up with protective Covid gear, and apparently Brian responded by inventing a protective outfit that insured minimum respiratory droplet and maximum social distance at the same time. Signed, sealed, and delivered. You set the bar for safety, man.
Happy fall, friends. Would anyone like to join me at the new Perry meal sign up page? And grab a line or two? The sign up sheet is here. Gold studded belts are optional in this round, but bell bottoms are strongly advised.
Picking up where we left our heroine in the last episode, Dea has made it home safely from California, she set a new bar for glamour on the way, she outran the Coronavirus in all those airports, and the superhero suit that gave her flight has been dutifully burned and deleted. After many big efforts by the whole Perry clan, and one small fire, the band is back together, at home, for summer in the Pacific Northwest. I would ordinarily insert photographic evidence right about here, to authenticate such an observation, but it turns out to be really hard to find them all in one place at one time. Peter is working overtime to keep the business going in a season full of challenges. Ricky is finishing up the final quarter of his senior year (from home), and holding down a job all the while (also from home). Dea is working to support the boys and stoke the Aurora Florialis as energy permits, but she’s also busy working to figure out how much energy actually permits.
As she was getting ready to leave Santa Barbara, Dea learned that she’s got eight new tumors in her spine, and those buggers are making ordinary activity a pain in the neck. And back, actually. Then, on Monday, she learned that she’s got yet another handful of newer tumors in some other bones. As she settles in with a great new team at Seattle Cancer Care Alliance, she is getting ready to do some new testing to assess other promising long-term treatment possibilities. In the meantime, they’re also switching treatments right away, and looking forward to the prospect of this summer’s new meds being tougher on tumors, and gentler on the rest of her. Amen.
Dancing with dogwoods just today!
Dea is in good spirits and she’s leaning in to her new round of adjusted treatments. Her docs are encouraging her to keep moving, she’s giving that everything she’s got, and the trusty bones seem to provide best support for that mission in the mornings. But they seem to rebel a little as the day goes on, and so we’re putting out a call to get the old meal train band back together, as well.
There’s been a groundswell of support and encouragement to help out, so we’ve resurrected the old meal sign-up list, which is here.
Might you be willing to put together a meal or two for the 3 Perrys this year? Rumor has it that our patient’s summer diet is simple, and that’s all spelled out on the sign-up page. What’s more, Dea is encouraging cooker-friends to call or text on your meal day – to say hello and assess the possibility of coordinating a 1-1 socially-distanced hello when you stop by. If the kitchen muses are with you this year, and you’re willing to share a meal with the Perrys, you can sign up here.
Getting ready to fly from Santa Barbara to Seattle in the middle of a worldwide viral pandemic, with a suitcase full of medical complications and a plan to rejoin Pete and Rick in the Pacific Northwest.
Have you heard the one about the runway model working to find her way back to Bainbridge Island in the middle of a worldwide viral pandemic? While the rest of her family worked feverishly to get there as well, to meet her? On a bunch of different timelines? Juggling different agendae? Wrestling different alligators? Just so they could lock down together and share some quality quarantine time?
After an epic winter in Santa Barbara, and just as the contours of the US pandemic were taking shape, Peter left California to shore up the Bainbridge base camp, while Dea held tight in California. Waiting for the right moment to shoot north and rejoin her boys for the duration of the quarantine. As we know now, while the pandemic swirled, it got increasingly complicated to find any kind of ‘right moment’ for air travel, and so it took her more than a month to find an opening, and make her break for the north. Recall that she’s been juggling chemotherapies and radiation treatment, and she recently relinquished a part of her right lung to the universe — so we really don’t want her to bump into that damned virus in any dark alley. Or on a commuter flight to Seattle.
As her travel strategies formed, and specific plans took shape, Peter and Dea catalogued every risk, and prepared a thousand mitigations. The concept of suiting up with full hazmat garb seemed sensible enough, but as the travel day approached, some important practical details started coming into sharper focus. How should one really accessorize the globally coveted, 2020 edition 3M Hazmat Gown – to do it justice and evoke all those nuanced messages that the designer embodied so masterfully? How to assert those aesthetic statements that a lesser runway model could only dream of conveying? How to express this year’s spirit of fortitude, distance, and just a smidge of ‘stand back, here I come’? Especially when one hasn’t stepped onto an international runway in eons. Well, you just know our girl rocked all of that.
On a sunny April morning Dea got up, donned the gown, loaded the accessories, and she attacked that runway. Reporters at the scene claimed that she seemed to be in solid control, but she made the fatal mistake of texting me the hazmat photo that you see above. Rookie mistake, runway queen. By sending me that photo you only doomed yourself to the eventuality that I would leak it here sooner or later. And by revealing specifics of your travel plans, you gave the paparazzi just enough information to track you down for an ambush as you were coming off that runway.
Dea arriving home immediately after her long day flying up the west coast. No animals were harmed or quarantine bubbles were broken in the production of this event. Individual quarantine groups maintained healthy physical distance at all times — even if the social distances shrank to nothing out in that street.
As she has been settling back onto the island, and into the quarantine company of Peter and Ricky, Dea has been caught recounting many stories about the love and support she received during her Santa Barbara adventure. My memory isn’t great, but I know I’ve heard heartfelt Santa Barbara stories about Auntie Tita, Leanne and Doug, Hugh & Carol, Laurel, Don & Barbara, Michael & Fred, Terry & Sam, Joanne, John, and Don — and every story seems to end with a smile and a sigh of appreciation. It sounds like you guys had a pretty cool winter down there.
And in that context Dea was just remarking upon a comment that Ricky made in passing… “Mom, If it weren’t for this pandemic, I’d be working in Seattle this summer, and we really wouldn’t be seeing much of each other in these last weeks before I move to Texas.”
We can elaborate on all of that and other news later. For now, welcome home Dea, Peter, and Ricky.
Quick update from Dea: Hello dear hearts, Got some great and some not-so-great news today. While my tumor markers are going down (great!) there is a new abnormality on my T1 (thoracic vertebra #1). Scheduling another MRI to determine size of the tumor and possible radiation to that spot. This one was irradiated in October, 2017, so my radiologist and oncologist are discussing next steps – which may depend on the intensity of that past treatment.
In the meantime we are loving the fantastic 70° weather in SB. My dear friend Lisa Carpenter Landis is here for the week. Lots of girl time for me, and Peter & Lisa are also getting some fantastic hikes in the mountains. Planning on beach time tomorrow after walking with great friend Michael and Jacksonthe wonder dog on the cliffs overlooking Hendry’s Beach.
That’s all for now. Planning a deep breath/deep smile before I lay my head down to rest tonight. In the meantime, you all know how much I/we love you.
Dea & Peter Sent from my iPhone
Dea just sent this news and asked me to post it as an update to the Daily Dea Diary crew. As you will recall from her Halloween post, just as fall started turning wintry, Dea shuffled down to Santa Barbara to work with a team of cancer specialists who do their thing in the sunshine. Or at least in a pretty sunny part of the world.
The winter docket has been full, as expected. Thanksgiving and Christmas visits from Ricky were hands-down highlights. When it was time for the grindstone, radiation treatments occupied the shortest days, and the local docs had other ideas that added some additional treatments to the agenda. The people have been kind, and SB has proven itself a good place to winter. An endless supply of fresh fish has added nourishment and sunny beach time with Peter just keeps charging the batteries.
As they find a migratory rhythm that seems right, the Perry clan is working to lock down SB digs for next winter even as they start turning their thoughts to this summer’s gardens in the Pacific Northwest – which will be waking up just as those garden hounds come back with the songbirds in April.
So glad your trip has gone well, and we can’t wait to see you guys back on the island, Dea and Peter!
“It must be summer somewhere,” the Aussie transplant said as he pulled up his shorts and marched off to the beach across the street…
Do you remember that first Daily Dea post, way back in June, which ran under the heading “The Summer Adventure of One Strong Woman”? At that point, we were hurtling toward summer, Dea was hurtling toward lung surgery, we had no idea what was in store, but it felt like we were hurtling together. And so much has happened since then. For starters, Dea delivered on that whole “strong woman” thing, and you guys delivered on “together.” A bunch of good caring and healing went down, and then summer passed into the pages of the history books. The way seasons do.
As we all turn pages through autumn, the Perry clan has been buzzing through pages and chapters at a wild clip. And so I pledged to post a quick update on some of those developments.
First of all, in big/bold Perry fashion, the family rented out their B.I. house so that they could jump into winter plans with both feet. Ricky is back in school and buckled in for his home stretch at UW. Peter and Dea spent October in the toasty warm Crystal Springs home of very dear friends (pictured above), and right now they are both heading down to California for winter. As I write this Pete’s half way there in the Land Cruiser, and Dea is about to lap him as she flies down the coast tonight.
Their plan took shape with visions of warm sands, salty waves, and a bit of together time after a very long summer. While they were packing up, however, they learned that Dea’s got a new little tumor in a lower spinal bone. Of course, this has added some layers to the California plan, and so Dea jumped into action to adjust the itinerary. With the help of some dear friends, she quickly found a cancer treatment center in Santa Barbara, and she’s getting ready to spend the first part of winter navigating radiation therapy on this new lesion. Dea reports that the team at the Ridley Tree Cancer Center has made a really positive first impression as a bunch of focused, expert cancer specialists who have been remarkably welcoming and on the ball during their remote planning process. Treatments will start shortly after Dea hits the ground in SB, and she is steeling herself for a process that was memorably draining the last time around.
Looking back on a summer of remarkable connection, community, and healing Dea asked me to thank everyone for all of the love and support that you heaped on the Perry clan. Looking forward to the new chapter that is taking shape for winter, she asked me to pledge that she’ll be sending updates on this next leg of the journey as soon as she gets settled and oriented in her new California digs. Understood.
For now, sending love, strength, and wishes to you Perries for a safe journey to Santa Barbara. We’ll be waiting to hear how things come together on the ground down there. More to follow…
One night last week, on the way home from work, Mary and I swung by the Perry ranch to pickup a car. We were heads-down, ticking through evening errands, and imagining that we’d be ticking right through the evening. But then Dea snuck up on us. All grins, hugs, and summer sunshine. That one may be rebuilding her strength, but she certainly had the force to shake us out of our errand-ticking stupor in a hurry. She hauled us into her little backyard nirvana, and instructed that we would be pausing – to sit, catch up, and to manufacture one of those timeless Pacific Northwest evenings that reminds us how good summer can be.
A bunch of that catching up is worth sharing:
Since her surgery, Dea has found a rhythm that has allowed her to sleep deeply, eat well, and heal progressively each day. They say her lung capacity is up to 75% (and climbing!), despite the loss of a whole lobe. The grand healing strategy for this summer is working.
She attributes this remarkable reality to the pile of love, friendship, and support that her crew deployed in a moment when it really mattered. Between the lines, within the lines, and across the lines of every comment she uttered, she was gushing gratitude.
As she spoke of her gratitude she mentioned a bunch of people by name (you and you and you), but again and again she veered off to note two particularly special threads: 1) “Peter is my knight in shining armor.” If there are a thousand ways to paraphrase this sentiment, I must have heard a dozen of them as we talked. Those kids. Oh to be young and in love… 2) “Ricky is my life boat. It is such a blessing to have him around this summer.” Yeah, living the dream.
Dea asked me to thank everyone who has participated in the Perry meal brigade. Even as Peter is working like a fiend to hold things together this summer, this infusion of love (er, food) has allowed her to regain a bit of weight, rebuild a bit of strength, and sleep a bunch. It also allows Peter to keep the trains running ontime, and to support Dea’s medical stuff. Dea mentioned that she can’t wait to “toss away those training wheels” of the meal brigade but a couple friends here on the ground have convinced her that full 2-wheel independence might need a little more time. As such, we are extending the Perry meal brigade through August, and I just updated the meal calendar with a bunch of new sign up slots. Would you consider signing up to make a meal for the Perry clan in their summer of rebuilding, here?
Dea’s summer calendar is still packed with doctor visits, but they are rather encouraging. Initial tests suggest that her tumor markers have dropped tremendously since her surgery, her surgical wounds are healing nicely, and it’s just awesome to see things moving so powerfully in a positive direction.
It is a special thing to marinate in friendship with such positive vibes. As we walked back to the car at the end of the evening Mary declared, “that woman has got bottomless grit, grace, and gratitude.” Yep. Amen.
There was so much going on in Dea’s world today! And so many images came across the wire during the adventure… Rather than writing a long narrative update, let’s try today’s news in the style of a graphic novel, and let some of the day’s images speak for themselves.
Twas a day of travel, ferries, Seattle, and doctor offices. Thank goodness for Theresa!Stitches out? Free at last, free at last… Dea claims that she can now flap, swing, and throw much more freely without those pesky stitches. I mean, just in case you’re wondering what you might do if you visit over the next few days…Live Tweeting from the doctor’s office. Somebody’s feeling pretty good today. And, if you’re reading this, she’s obviously missing you (can you take a hint about calling/texting?).
Go Bubba, go! I think Dea got these shots just for us.
So much to take in there from Dea’s message. 1) Go Dr Bograd, and your super cool robot! 2) Go Dea, and your miraculous expanding right lung. 3) Rest, exercise, and party? That sounds like good advice for any one of us. You rinse and repeat, girl.Dea really wanted to end the day’s shenanigans with a picture like this one. Those kids… People who witnessed this production will attest that she covered rest, exercise, and party all in this one move. Very nice.
One more thing! Late this morning, CarolAnn sent the following message:
Aloha Matt ~ I am contacting you on the QT. Because of the nourishing generosity of Dea’s gang, she is eating more than she has in a very long time. She now eats whole meals, instead of nibbling like a little bird.
I am wondering what you think of asking her Meal Train to keep chugging along for awhile longer. Building up her physical strength by eating more and gaining weight will definitely help her immune system work its magic.
Of course Dea and Peter would never ask for this, but I know the steady of supply of love and food from their friends will make an enormous difference in their ability to continue on this healing journey. Please let me know what you think.
Mahalo, ~ CarolAnn
Dea had also told me that she’s sleeping and eating more than she has in a long time, and she’s super grateful for all the generous support of food and love from all of you. What do y’all think? Could we extend the food drive for another month? I’m told that the every-other-day cadence is just about right, and so I just went to extend the meal sign-up sheet through the end of July. Would you be willing to sign up for a Perry meal? The sign up sheet is here.
I’m told there comes a time when a girl has got to get up, and get out. And when it comes, there’s just no fighting it. Apparently that time came for Dea today. And so, obviously, she went straight to Bay Hay to check out the straw. Because, duh.
Word on the street is that summer really got into her today. A little adventuring in the car, a toe back in the garden, and a brand new fire in her belly to ward off the (decidedly rascally) rabbits that took up shop in those garden beds while the garden queen was otherwise distracted.
If you’re looking for her out about town, tune your radar for the pair of island women cruising the Aurora Florialis rig – CarolAnn at the helm, windows down, sentimental oldies thumping the bass as they pass. If you make a sighting, and want to lure them in, I hear they’re biting on cheap champagne and a crispy toast to clear lymph nodes. Here’s to that…
Dea and CarolAnn out about town on Dea’s first foray away from the infirmary. In Dea’s words, “I’m sprung.”
Friends, the theme of the day might be sighs. Or deep breaths. Oh breath, how do we breathe thee deeply? Let us count the ways…
First, just behold the quaint familial unit (above) hanging out, and chilling with dinner, like it’s just no big deal to be together. At home. Chowing down. Ho hum. And oh the blessings.
Second, Dea reports that since her return to the island she is eating well and sleeping restfully. In her own bed. And she can quite literally breathe deeply. Despite some really serious surgery on her lung, and a bunch of post-operative poking and prodding, as of my last chat with her, she is dutifully doing her prescribed breathing exercises, and she can breathe pretty comfortably. And so we remember to cherish these things that might occasionally fall taken for granted. It’s helpful to have the necessary gear working properly when a big sigh of relief is in order, and that order came this afternoon…
Although she hasn’t talked much about it, the second big objective of her surgery was to collect lymph node biopsies, so that they could be tested for the presence of any funkies that might be wandering into those systems without permission. Today she got word that her lymph node biopsies were tested, they look clear, and so people who know her say they may be the only part of her that is NOT funky. These test results were a giant relief, with giant implications for the way she’ll be able to spend the rest of summer – outside of radiation and chemo wards. Dea, tonight we all breathe a deep sigh of relief with you. Seriously.
A quick housekeeping note: our dearest patient reports that her fridge overfloweth with the generous supply of meals that people have helpfully delivered. In order to moderate the new task of managing the supply of food in the house, we have modified the volunteer food signup list by eliminating every other row in the meal calendar. This was a quick and dirty strategy to cut the food supply down by half — and we urge you to please look here to see if your meal day was adjusted or canceled.
Dea asked me to encourage people to “please feel free to contact Dea in regard to food deliveries. Please provide enough food for four people, as Ricky is home for the summer and we have one additional guest staying with us for the next number of weeks. Preferably organic when available, with vegan options as well.”
“All I know at this moment is that I’m the luckiest girl in the world. Julie and Auntie Tita from Santa Barbara just picked me up from Swedish. It’s the Great Escape! Dodging traffic to catch the 3:05. Home sweet home for some real food! Best nurses, worst food. Thank goodness for Whole Foods next door! We have plenty of food tonight. Ricky coming home tomorrow so I’m thrilled. Home home home my heart is full.”
I spoke to the escapee briefly as she was sailing into Eagle Harbor, and she mentioned that she can’t wait til she can have visitors — but she’s not there quite yet. “I feel like I’ve been run over by a bus.”
Got it. Of course you’ll all be the first to know when that changes.
Happy Friday, friends. Have you seen that Dea published a comment on yesterday’s sandwich post? Her response is at: https://www.deaperry.com/2019/06/13/i-pity-that-sandwich/ but I’ve also reposted it, below, on this page so it’s easier to find.
Maybe Dea covers all the important stuff in her own words, but I’ll add a little just because I promised her that I would. It sounds like Dea’s post-op process continues to move forward productively, even if it inevitably takes a bunch of energy.
A welcome piece of news for today… Dea’s lungs are clearing fluids so effectively after the surgery that today her team felt comfortable removing the long tube that was placed there to help keep her lungs clear. She reports that the world is a much more comfortable place with that bugger out of the way – and so she can breathe more deeply, more easily. Log another step forward.
A welcome piece of inspiration for today… I asked Dea if there was ‘anything else’ she wanted me to post in the News of the Day and, before I could even finish my sentence, she was gushing about her good fortune to be in better circumstances than some of her floormates at the hospital, and her appreciation for the super-human diligence of her nurses, and the savvy competence of her surgeon. This was the most animated part of her update, and so it was all I could do to listen and listen to the river of gratitude. When she had finished listing all the hospital staffers around her, and all of the ways they were working like crazy to make the world a better place, she paused for a long moment. And then she said simply, ‘it’s a good day.’
Perhaps enough said. Sending you strength and love Dea P.
She speaks! Dea is up and, while she says she’s working to shake off the fog of surgical meds, she sounds as clear and bright as, well, Dea. I know I should not have been surprised, but she was packing more smile in her voice than I was expecting. She had a pretty long Wednesday, but she’s shifting into gear for some serious healing and strength building.
Dea’s thoughts and comments of the morning were focused like a laser on what she can do to heal up and charge forward. She sounded straight-up undaunted until her food arrived, at which point she did betray a hint of concern about how she was going to wrestle the sandwich they put in front of her. For that little showdown, I know how I’m betting.
Dea seems psyched about her medical team. She really likes her thoracic surgeon, Dr. Adam Bograd, who is highly acclaimed and has a great way of working with the post-op nurses to lead a coordinated team effort. Dea remarked that Dr. Bograd may also be the smiliest doc she’s ever hung with, and it sounds like this has a good effect on the team as well.
We did get a little update on Bubbette – Bubba’s robotic surgical companion. It seems Bubette was playing more of an oversight/supervisory role for Bubba’s important work – and so we all might include a nod of thanks to the robot overlords in today’s daily thanks.
I shared all of the comments that friends have been sharing, and Dea mentioned that she was looking forward to checking in with the chat group later today. Sending you strength, Dea P.
Peter’s assessment of today’s surgery: “Successful. In recovery. Sent from my iPhone.”
To this I say, yeah! Sent from the bottom of my heart. I suppose we can only take this one step at a time.
Peter is spending the night at Nicole’s place in Seattle. She reports that: a) He’s taking a deep breath and expressing confidence as he looks to catch a bit of sleep before the day ahead. b) The name of Dea’s second robot has not yet been reported. With gratitude to all of the many people who made today a positive step forward… We’ll share more details as they become available.
Today is Dea’s scheduled surgery – in fact she is probably there as I write this. Sending thoughts, prayers, and love all day.
Last night Dea was explaining that her surgeons are planning to use some fancy, modern robotic tools for her procedure, and apparently this gave her a little extra bit of comfort. She mentioned that, actually, two robots would be doing the dance. Her voice was full of smile as she explained that, clearly, one of the robots is a male – and the other is female. Apparently, she is quite sure, that his name must be Bubba, but she has yet to receive a formal introduction to the she robot – so we’ll have to wait on her name. Here’s to today’s formal introduction?
Lots and lots of people visited this web site overnight, and already people are signing up for meal/errand support and sending comments through the chatroom. Thank you! When she comes up for air, Dea may be happy to check the chat for thoughts of the day.
Dea, we are all riding with you. Sending you love and wishing you the presence of mind to feel the load of care that is rolling your way.
Friends, Julie Meyers is coordinating a meal/errand calendar in order to keep the Perry family well fed, and to lighten the load on their scrambled schedules. Would you be willing to prepare a meal for the team? Or make a run to the pharmacy? Please consider adding your name to this sign up sheet, here.
What adventures dost our mighty heroine tackle this month? Our dearest Dea has elected to check into the hospital for a surgical procedure to remove some tumors from her lung on Wednesday, June 12. This Daily Dea website (DeaPerry.com) has been set up to share updates with family and friends efficiently, so that Dea and her support crew can devote their full attention to healing, supporting, and holding down the fort.
Circling wagons. Dea wants to stay in touch with her family and friends (you!) through this process, but she’s requesting that we please try to keep this conversation off of Facebook, and out of the standard text/email channels. Over the coming days we’ll post news and updates online here, we’ll collect any comments that you post on the site, and we’ll sneak them into Dea’s room. If you subscribe to the News of the Day ‘blog,’ you’ll be sure to receive updates as soon as they’re posted. If you chime in to the comment conversations, Dea and company will surely hear your voice. This site is just a private Dea space so, of course, we won’t share your contact info outside of this circle.
