Monday, Sept. 14, 2009
Dearest friends and family,
Truly, we are on the “one day at a time” track here in the Knight Bone Marrow Treatment Unit at Oregon Health Sciences University. I arrived Saturday morning (while Scott and Pete drove South) with time to spare before the medical team's morning check up - to give Reido a thorough Mama-Once-Over (hugs, kisses, more hugs) and sit down to read through the copious notes that Pete had taken each day of his shift. Each entry recounts new information, medical terms, treatment suggestions for a variety of different “issues” that arise during chemotherapy, and reports of Reid’s interactions, questions and general progress. (For those of you who know how adept Pete is at note-taking, you will appreciate as much as I did, the nth degree to which he took his stenographer’s task.) Since my departure five days previous, I was tremendously heartened to see my boy smiling and laughing with cousins, the color up in his face, and that familiar glow in his eyes indicating attention and acuity that had been sorely missing. It was such a relief to be back in his presence, as I'm sure you all can appreciate.
So, here's some news to share:
One of the biggest issues late last week revolved around clearing the strep throat infection and getting Reid to take in more calories. Not surprisingly, as the throat pain subsided, the willingness to swallow increased, yet the chemo periodically makes him nauseated. For a few days, the docs were considering prescriptively inducing more appetite. Finally, rather than reenact an old Chech and Chong movie, Reid pulled it off on his own (although he’s still not packing it in the way fellow skiers have seen him eat between races). So, he eats - pain free - at last. I’ll digress a bit here to note - that because his immune system is so fragile, Reid is on a “low bacteria” diet, which crudely translates to: Nothing living. YIKES! It’s a true conundrum. After all these years of feeding him yummy healthy fruits and veggies to keep him big and strong (and fight off nasty dragons like...cancer, not to mention the common cold), we’ve been sitting here for over a week with the LOW-BAC menu from the OHSU cafe selecting canned peaches and sandwiches sans lettuce. As it turns out, we weren’t quite given ALL the options in the food department - as we learned yesterday from Tim, the cool weekend nurse, that if we bring in fruit to the nurses - they’ll peel it for Reid (hence all the potentially harmful stuff will be removed) and allow him to enjoy the season's harvest. Tomorrow I’ll be out selecting magic mangos and apples from the nearest Whole Foods store.
Current challenge number two, the aforementioned nausea, is a fairly common side effect of chemotherapy. It’s an easily treated discomfort, although treatment can have other results - like sleepiness. And so it goes. The very first afternoon we were here (Sept. 4), Reid and I met one of his medical team who said to him, “I’m going to want to see you out walking as much as possible; if you stay in bed, you’ll act sick and be sick, and so I want to see you moving.” Of course at the time Reid was pretty wiped out by the strep and not interested in doing much of anything. As he has progressed through his treatment, the theme of movement has come up again and again. He is encouraged to take walks around the unit (a big loop through the hallways of this floor) at least three times a day. Well, with the throat cleared up, the food on board and plenty of us nagging (oops, I mean - cheering) him on, he’s been great about getting out there and strolling. Turns out though, walking while on chemo causes Reid motion sickness. Once we figured out this cause-effect, the nurses put a small motion sickness patch - ala pressure point therapy - on Reid. Of greater importance today, as he officially completed the induction chemotherapy as of 4 PM Sunday, is the fact that movement therapy becomes an essential component in Reid’s healing. We’ve learned that as his body begins manufacturing new blood cells (post chemo), one of the things that he can do to stimulate that process is move. Walking, exercises in bed, gentle yoga.....all of these will increase cell production.
Reid is motivated and intentional about what comes next. Post-chemo days may be uncomfortable as his body strives to rebuild everything that has been wiped away. His physical body may feel very different, right down to food tasting unusual as even his taste buds are changing. This will be tough work for him, no doubt about it. I wrote last week about my vision of Reid “laying down new cells” much like he would lay tracks down a powdery slope of fresh deep snow on his skis - making the run down the mountain look easy and effortless with only the practiced skill that a true alpine racer exhibits. This next couple of weeks is that time. As you all hold him in your hearts, I would ask that you particularly send him infusions of strength and grace as he creates new pathways of health in his body.
As for the rest of the family, Pete and Scott and I, respectively, are stretching to pin down alternative definitions of “normal” as we each figure out details such as: the back and forth travel across the great state of Oregon, manage family and community communications, maintain our various life/work commitments and try to keep this rocking boat steady for two younger sisters. We are getting tons of help, and we are very very grateful. If the start of the soccer season was an indicator of the Sarah and Ginny’s wellbeing, then we’re on track so far: Virginia went out to the pitch on Saturday and celebrated life with three soundly delivered goals (known as a hat trick) in the match’s first half, and Sarah thumped one of her own in the net later that afternoon in a game for AHS. The solid foundation of unconditional support that you, our families and friends, are offering and continue to bless us with is immeasurable. It’s uncanny how the gifts and acts of kindness that emerge are always the exact perfect thing - filling the need or open niche - at the exact perfect moment. At a time when I most would like to sit knee to knee with God to ask some very direct questions, I cannot deny the presence of the Divine in all of the love that surrounds Reid and our family. I thank you, truly.
I’ll try to keep checking in. It’s lovely to hear from you all via email, and I read many of them to Reid when we’re together.
~ All will be well. Love, Martha
P.S. Chronology of a situation like this is tricky - especially when the writer would like to include a few random things. I hope it comes as no surprise to learn that yes, even in the face of what feels like a supremely unfair "shit happens" situation - there have been moments of humor and profound joy. That said, here are a few random things about these past ten days: 1. Entering a large hospital far from home on the Friday before Labor Day weekend is not advised. 2. Watching a movie entitled “Pooty-Tang” really is as ridiculous as it sounds; watching it twice takes the cake! (Thanks Clay) 3. Reid’s room can house two cousins, a second cousin, two second-cousins-once removed, an uncle, a stepdad and a dad - and it sounds like a cocktail party. 4. The Mercy Flights crews are outstanding - and that business about turning your cell phones off inflight is an absolute myth. 6. Beautiful artwork and windows everywhere offer solace. 5. Dee Christlieb, who has been our family general practitioner since Reid was a toddler, is the doc who caught this. If you see him, give him a hug - or four. 6. “Family” is not defined by blood, names, history or legal documents. 7. Laughter, dancing, tears, naps, and warm food actually do make a difference.
Sunday, October 25, 2009
Day Nine - Friday, September 11, 2009
Friends -- Please see Scott's message below.
----- Original Message -----
From: scotth
To: Carolyn Anderson
Sent: Friday, September 11, 2009 9:17 PM
Subject: Friday night
Hi Carolyn; What could be more unexpected than a blazing September sun? Kohler Pavilion's own wonder boy: lucid, laughing and practically himself again. Post remission survivors of every stamp tread these halls paying homage to the cancer gods. Boy howdy! Ditch the gown and IV stand and Reid could be one of them. All in good time. What fun to see him in good spirits. Martha returns tomorrow flying over Eugene while Pete and I, cruising along far below, anticipate a mid-day arrival back in Ashland and another of Sarah's soccer matches. Thanks all. Your prayers have hit their mark. Scott
----- Original Message -----
From: scotth
To: Carolyn Anderson
Sent: Friday, September 11, 2009 9:17 PM
Subject: Friday night
Hi Carolyn; What could be more unexpected than a blazing September sun? Kohler Pavilion's own wonder boy: lucid, laughing and practically himself again. Post remission survivors of every stamp tread these halls paying homage to the cancer gods. Boy howdy! Ditch the gown and IV stand and Reid could be one of them. All in good time. What fun to see him in good spirits. Martha returns tomorrow flying over Eugene while Pete and I, cruising along far below, anticipate a mid-day arrival back in Ashland and another of Sarah's soccer matches. Thanks all. Your prayers have hit their mark. Scott
Day Eight - Thursday, September 10, 2009
Dear friends and family -
I'm shooting for a thorough update here, I hope I can answer the many questions you may have swirling around. I know that some of you are receiving an email about this for the very first time, and this email will come as a huge shock. I'm sorry for the delivery - and urge you to read through the attached emails and updates previously sent - so that you can bring yourself and loved one around you "up to speed." (A history if the email updates pertaining to Reid are attached here with the very first one at the bottom - and then up the page chronologically.)
As you may know, Reid David Honeywell, our son-brother-grandson-nephew-friend, was diagnosed in this past week with Acute Myeloid Leukemia, of which there are seven "types." The type that Reid is battling will soon be revealed with specific chromosomal testing through a bone marrow biopsy taken last Thursday. Biopsy results take time and study. With the "type" identified, Reid's medical team at Oregon Health Sciences University (OHSU) are presently and will continue to determine his course of treatment, maintenance and healing. Regardless of this deep science, they knew enough five days ago to proceed with Induction Chemotherapy.
Induction chemotherapy lasts 7 days. Then, there is a three day "rest," and at day 14 - another bone marrow biopsy is taken. Throughout this period of time, the docs are watching Reid's every response - to the miniscule - to help determine all of the best ways to support his healing. With all of the variables (labs done every 8 and 12 hours and their results, side effects of the chemo, Reid's morale, any and all potential infections and his ability to fight them off) - things are constantly in flux. At day 28, another bone marrow biopsy will be taken. Between 14 and 28 - treatment will depend on all of the aforementioned variables. The Docs want to keep Reid at OHSU because of the level of care that is necessary as well as the extreme risk of infection that exists with people dealing with AML. The email below that Scott wrote addresses this very well. Additionally, Reid's nurse (whom I talked to a couple of hours ago) put a fine point on the infection risk concern with this warning: "The main thing we need to watch for is infections. Visitors must be 100% respectful of this situation. Anyone who feels sick, feels that they're becoming sick, or even has been recently exposed to someone who is sick MUST POSTPONE their visit to Reid until they feel better. No exceptions." (Note: If you find yourself in the postpone category right now - you can send him care packages, letters, fun things to pass the time, emails, text messages. If you're on skype, you may get lucky and catch him while he's on the internet and actually be able to see him through that avenue.)
Reid's lead resident Doc said to me three days ago, the hardest part of AML for family and patients is that they want definitive answers and a direction to proceed, but in fact - it's impossible to provide that with AML because Reid's state will be changing continually. What we know - besides the medical science - is that this highly trained and cutting edge medical team is treating a 19 year old healthy young man - who doesn't smoke or drink, is athletic, and has a fantastic health history. Statistically alone - Reid has everything on his side. What we know emotionally and spiritually - is that they are treating a gentle, loving, vibrant person - who has the ability to focus on what he is passionate about, make things happen that are positive and has a huge network of love and support around him. He's going to beat this - and he's doing it now.
Nurse Diane also told me this morning that Reid is handling the chemo really well. His labs all look normal. He's has a bit of nausea, but they are controlling it successfully so far. His appetite is down, and they've pep talked him about that, asking him to please TRY to eat as much as he can. If there isn't a big change there, they even have prescriptions for stimulating his appetite - which they'll use if necessary.
On the emotional level, Reid is experiencing what they call "common" especially in people his age - (especially young men). While his demeanor is better today than yesterday, he's processing feelings of anger and loss of control. He is grieving the loss of the life he knew as "normal." He has occasions if withdrawing and not wanting to engage. The staff at 14K in the Knight Bone Marrow Unit are extremely tuned into all of these aspects of AML patients. When they talk to Reid and interact with him, they are giving him lots of information and educating him, which I'm told Reid really appreciates. The more he knows and understands, the more "normalcy" this has for him - and knowledge gives him - (and the rest of us) a sense of more control.
I was with Reid from his emergency departure from Medford by Mercy flights to Portland last Friday until Tuesday of this week, while Pete wrangled the girls and the start of the school year. Scott hustled up to Portland on Monday, and he and Pete have been there this week while I came home to check Sarah and Ginny. In the next twenty four hours, we'll all be "swapping around" again. We'll keep this up - along with the support of other family members - for as long as needed. The presence of Emily Steele, Reid's girlfriend of two years, this past couple of days has been very positive for Reid, and we're hoping she can find a way back to snuggle up with him before she starts her freshman year at SOU. His buddies from Ashland are organizing for a visit soon, which I'm certain will have him smiling. Portland is a far piece to travel, and we're grateful to any and all of you who can peel away to be an I-5 road runner. Please be sure to network with one another - as there may be great opportunities for ride sharing. Likewise, I'd love an email when one of you thinks you're traveling North - so that if someone in the family wants to hitch a ride, we can. I'll respond if it's needed, otherwise - if you don't hear back - figure we're not in need at that time. Thanks.
We have experienced an outpouring of love and support that carries us continually like a warm wave. Carolyn Anderson - with the guidance of Jim Schlight and Karen O'Dougherty (close friends) - have put together a calendar of family and as-close-as family "teams" that are signed up to be in Portland to offer round the clock support to Reid and whichever parent is with him - myself, Scott, or Pete. Meanwhile, Christiane Pyle (mama of little sister Virginia's best friend) is coordinating meals in Ashland to support Sarah and Virginia with which ever parent they find themselves home with. My family - Phelps, Davidson, Freidl, Kane, and Cotton - and Scott's family - Honeywell, Bliss and Posner - have all rallied and found their special ways of being present and supportive to Reid and one another - at what always seems to be the perfect moment in just the right way. Some of you have answered phone calls at 1:30 AM or closer to dawn, some of you have wept with me over the phone - which, believe it or not - has allowed me to offer comfort to you - in ways that have given a sense of purpose during this time of overwhelm. It would be nearly impossible for me to recount every act of kindness and the name of each person who has acted, emailed, called, texted. given something, offered a service, or wrapped their arms and hearts around us all. I'm sure, as this journey continues - I will think of you all at random moments - and I will remember what you've done - or are doing - and my heart will expand because of that recollection. Please accept this humble "thanks" - on behalf of Reid and our whole interconnected and beautifully mixed family. Also, please count this as a "thanks" deposit - to draw on at any time in the future.
I enjoy receiving your emails very much - the best one to send to is mphelpscotton@gmail.com. ALL of our phone #s are now cellular - which means that the least expensive time for us to take calls is when it's FREE (after 9 PM and on weekends). I do have unlimited texting - so go for it.
I love you - and thank you. ~ All will be well ~
Martha
Christiane Pyle 482-8159 (Dinners for the girls coordinator in Ashland)
Karen O'Dougherty - odough@charter.net (info.)
Carolyn Anderson - anderson@abklegal.com (email updates)
Mailing Address:
Reid David Honeywell / Unit K14
OHSU
3181 S.W. Sam Jackson Park Rd.
Portland, Oregon 97239-3098
Reid's email: reiddphelps@gmail.com Yes, he has his laptop and internet access!
P.S. On a technical note. Those of you who know me know that I rarely send emails with visible addresses. Please forgive the public display of your address, as I am attempting to allow our friend Carolyn to collect all of the addresses that I haven't been able to access until now. She will be adding these into an undisclosed address group that will be used from this time forward. Please forgive duplication emails this time around also. Feel free to forward this along to friends of Reid and our family. Also, some of you know one of Reid's sisters a bit better than you know him - this email was sent to you so that you could know what is going on in their lives.
Day Seven - Wednesday, September 9, 2009
Hi, folks. Below is a forward of the latest message from Reid's dad, Scott, who's been up in Portland caring for the lad. Scott's mom emailed me a message yesterday, which read, in part, that "When [Scott] arrived and saw Reid for the first time he said it felt so good to hold him in his arms. And [Scott] was pleasantly surprised at how much better [Reid] looked than he expected." I like the sound of that!
Carolyn
----- Original Message -----
From: scotth
To: Carolyn Anderson
Sent: Wednesday, September 09, 2009 4:39 PM
Subject: Re: Reid's Status 09.08.09 (supplemental)
Hi Carolyn; here's a few lines from this afternoon.
Hi All; everyday, newness, hopefulness and more cleanliness--the ultimate now: 14th floor. Bone marrow transplants take disinfecting to a heightened state of alert, which doesn't necessarily pertain to Reid as his "family" of Acute Myeloid Leukemia types has yet to narrowed down from 7 to the nasty culprit that got him into this fine mess (hopefully to be determined by weeks end). But since he has arrived, protocol is critical for everyone, possibly disqualifying more than one of his chums scheduled to hit town en mass come Sunday. Coughs, colds and runny noses have to wait outside.
Until today, nothing could have boosted Reid's spirits so well as a girl friend's gentle embrace and if kissing through one of those scratchy masks was possible Reid and Emily would surely have discovered it by now. Reid's social worker, Keren McCord offered insights yesterday and today while Pete, daughter Bethany and I shared habits, traits and character flaws. Once finished with ours we dug up a few on Reid and Emily. What turmoil their young lives have found. Our hearty clarion optimism trumpeting on high will fall on tender ears 'til time makes all things clear. Meanwhile, dear ones, keep those cards and letters comin:-) The dad.
Carolyn
----- Original Message -----
From: scotth
To: Carolyn Anderson
Sent: Wednesday, September 09, 2009 4:39 PM
Subject: Re: Reid's Status 09.08.09 (supplemental)
Hi Carolyn; here's a few lines from this afternoon.
Hi All; everyday, newness, hopefulness and more cleanliness--the ultimate now: 14th floor. Bone marrow transplants take disinfecting to a heightened state of alert, which doesn't necessarily pertain to Reid as his "family" of Acute Myeloid Leukemia types has yet to narrowed down from 7 to the nasty culprit that got him into this fine mess (hopefully to be determined by weeks end). But since he has arrived, protocol is critical for everyone, possibly disqualifying more than one of his chums scheduled to hit town en mass come Sunday. Coughs, colds and runny noses have to wait outside.
Until today, nothing could have boosted Reid's spirits so well as a girl friend's gentle embrace and if kissing through one of those scratchy masks was possible Reid and Emily would surely have discovered it by now. Reid's social worker, Keren McCord offered insights yesterday and today while Pete, daughter Bethany and I shared habits, traits and character flaws. Once finished with ours we dug up a few on Reid and Emily. What turmoil their young lives have found. Our hearty clarion optimism trumpeting on high will fall on tender ears 'til time makes all things clear. Meanwhile, dear ones, keep those cards and letters comin:-) The dad.
Day Five - September 7, 2009
Greetings! I just spoke with Martha, and I have a bit more substantive news re: Reid's status.
Reid started chemotherapy last night. It really knocks him out; he's sleeping a lot. Please keep this in mind if you're visiting (as opposed to staying at OHSU as a caretaker). Longish, chatty visits can be exhausting.
The strep throat is still a bit of a bother. The docs have Reid on heavy-duty antibiotics and they're hoping for a result soon. The strep has made it difficult for Reid to eat any solid food for around one week.
A more definitive diagnosis has been made, although we're not crystal clear just yet. The docs are certain Reid's dealing with acute myeloid leukemia (AML), but there are seven sub-types of AML. They think he's looking at either type 4 or type 5. We'll know more when the bone marrow biopsy comes back. The long weekend is having an impact on staffing at the hospital, and the tests take time even when fully staffed.
Yesterday (9.6.09) was Day One of chemo. He'll have seven days of treatments, and then be allowed to recuperate. On Day 14, they'll do another bone marrow biopsy and determine at that point what further treatment is required: more chemo, perhaps something else. On Day 28 there'll be yet another bone marrow biopsy to evaluate how the treatments are working.
If yesterday was Day One, and he's in for at least four weeks after that, we need to extend the care calendar into October. I would like to get folks signed up through October 4, which would be Day 29 on the chemo schedule. Please look at your calendars and let me know who can do what.
I'll be meeting with Martha when she returns to Ashland soon, and I'll put her days in the calendar as well. The goal here is to have at least two caretakers present at all time, so that they can relieve each other and keep watch. Martha will no doubt be there the lion's share of the time, but we want others present in order to provide support for both Reid and Martha.
Scott will be in Portland today, and Karen O and Pete will be travelling north as well. Pete will be there through Friday, when Michael Kane (David's partner) will come up from LA for a few days.
Best to all,
Carolyn
Reid started chemotherapy last night. It really knocks him out; he's sleeping a lot. Please keep this in mind if you're visiting (as opposed to staying at OHSU as a caretaker). Longish, chatty visits can be exhausting.
The strep throat is still a bit of a bother. The docs have Reid on heavy-duty antibiotics and they're hoping for a result soon. The strep has made it difficult for Reid to eat any solid food for around one week.
A more definitive diagnosis has been made, although we're not crystal clear just yet. The docs are certain Reid's dealing with acute myeloid leukemia (AML), but there are seven sub-types of AML. They think he's looking at either type 4 or type 5. We'll know more when the bone marrow biopsy comes back. The long weekend is having an impact on staffing at the hospital, and the tests take time even when fully staffed.
Yesterday (9.6.09) was Day One of chemo. He'll have seven days of treatments, and then be allowed to recuperate. On Day 14, they'll do another bone marrow biopsy and determine at that point what further treatment is required: more chemo, perhaps something else. On Day 28 there'll be yet another bone marrow biopsy to evaluate how the treatments are working.
If yesterday was Day One, and he's in for at least four weeks after that, we need to extend the care calendar into October. I would like to get folks signed up through October 4, which would be Day 29 on the chemo schedule. Please look at your calendars and let me know who can do what.
I'll be meeting with Martha when she returns to Ashland soon, and I'll put her days in the calendar as well. The goal here is to have at least two caretakers present at all time, so that they can relieve each other and keep watch. Martha will no doubt be there the lion's share of the time, but we want others present in order to provide support for both Reid and Martha.
Scott will be in Portland today, and Karen O and Pete will be travelling north as well. Pete will be there through Friday, when Michael Kane (David's partner) will come up from LA for a few days.
Best to all,
Carolyn
Day Four - Sunday, September 6, 2009
Dear ones~ (forward this email as you like)
Sunday afternoon, and although part of me cannot fathom this fact - we're actually settling in here. How can that be? And how bizarre is that? At any rate, it's true.
Today we received the definitive diagnosis of Acute Myelo Leukemia. There are seven types of AML - and which type Reid will be beating is still a question that waits for the lab to answer. The type is based on chromosome differences, and may steer the direction of treatment along this journey. (For more details about AML, please research online - Carolyn offered up a useful website in one of her earlier emails. And, I am reminded by a dear friend in the medical profession, to offer that you remember that the internet is a great tool - AND - it's the docs who have been through the years of training that answer our questions and know Reid and his particulars - who are our strongest resources).
He will start chemotherapy tonight. It lasts for seven days and, as I understand so far, it involves two medicines - one that is given for the first three days, and one that is continuous for all seven days. Chemo will essentially kill all the cells in Reid's bone marrow (where cells are produced). We're going to wipe the slate clean so that beautiful, mature, healthy cells can come back and take up residence in Reid's strong body. I have this image - for Reid - of a big, steep ski slope covered in several feet of freshly fallen snow - powdery and glittering on a very cold and "bluebird" bright January morning. The snow has wiped away all traces of other skiers tracks, and now Reid gets to make fresh grooves - alone, with the wind on his face and nothing to consider except the feel of his body on the skis and the energy and strength of his body as he gracefully flies down the mountain. This is what he and his new cells will be doing when the AML goes into remission after this course of chemotherapy. And for those of you who have ever seen him race, I know you can close your eyes and see him too. He's such a physically beautiful skier - moving more like a classical dancer - agile, smooth and moving as though without effort.
Tomorrow Reid will move up to "unit" 14K. The 14th floor is the bone marrow oncology center, and - it has a youth center, where Reid can play WII and ride a stationary bike, among other things. He sniveled a bit about how he can't expect to meet anyone interesting there - because all they're going to have in common is cancer, and then the nurse told him that Lance Armstrong was treated here. Boy, that stopped the sniveling in a hurry! So, now he's looking forward to the move. These two floors of homotological oncology are VERY infection careful. When you come of go from the sealed unit, you hand sanitize. Then to get into Reid's room, you do it again - as well as put in a thin papery gown, a surgical mask, and latex gloves. Yesterday, Jarrett and Daria (Davidson cousins), Stefan (Ransom cousin), Bethany (big sis), and Uncle Dennis were all lined up along the couch in Reid's room looking like the biohazard easter egg team, with their pastel colored gowns on. We thought a little glitter glue and some colored sharpies might be in order for the masks, too. Although - I'll tell you that one gets pretty good at seeing the smile on someone's face in their eyes - when a mask is covering their mouth.
This process is both describable and indescribable. I can report the nuts and bolts easily (though it's challenging to relay the medical terms - there is such a HUGE volume of information being thrown at us all the time). Our thoughts and feelings are harder to pin down. There's overwhelm, sadness, anxiety, frustration, shock, a sense of injustice - while nearly simultaneously, there is determination, hope, focus, positive intention, tenderness, forgiveness, patience, courage, love and gratitude. We here - feel all of you with us in some way. I know I will be saying thank you to you all over and over for the rest of my life, and I'm deeply honored to do so. While Reid is appropriately focused on and engaged in his main job - healing and moving forward with his incredible life, all of our family (I believe I can speak for them) and I are focused on standing next to him while he does his job. Your love is a source of strength to each of us.
The girls are resiliently doing their thing. Pete's home with them now, and thanks to all of you and the amazing schedule Carolyn has created for us, we will trade off being in Portland and Ashland. I miss them very much, and can't wait to gather them into my arms for a few days this next week when I head south for a short break.
Other than all this - what I can tell you too - is that your emails are fantastic! I love getting them. It's wonderful when I get to peel away to get internet (we can't get it in the room, I have to go to the 9th floor to cut/paste/and send this) ,and I open my gmail account - and there are all these tidbits of loving kindness -short or long, they're appreciated. I also have found text messaging to be incredible (you can thank Sarah for talking me into that two months ago!) It's much easier to receive and read a text than go through the voice mail steps. This information age certainly helps in cases such as this....whew. If you want to send something to Reid, I'm fairly sure OSHU has a website with mailing address info. and contact instructions. He can't have flowers or plants in his room, but he loves funny cards and interesting pictures and images of all types. He doesn't want folks to spend money on him.
I'll stop back by sometime soon and fill you in on how the treatment is progressing. I love and respect and celebrate each of you - yours, Martha
What’s Left
(for Peter Hennessy)
I used to wait for the flowers,
my pleasure reposed on them.
Now I like plants before they get to the blossom.
Leafy ones – foxgloves, comfrey, delphiniums –
fleshy tiers of strong leaves pushing up
into air grown daily lighter and more sheened
with bright dust like the eyeshadow
that tall young woman in the bookshop wears,
its shimmer and crumble on her white lids.
The washing sways on the line, the sparrows pull
at the heaps of drying weeds that I’ve left around.
Perhaps this is middle age. Untidy, unfinished,
knowing there’ll never be time now to finish,
liking the plants – their strong lives –
not caring about flowers, sitting in weeds
to write things down, look at things,
watching the sway of shirts on the line,
the cloth filtering light.
I know more or less
how to live through my life now.
But I want to know how to live what’s left
with my eyes open and my hands open;
I want to stand at the door in the rain
listening, sniffing, gaping.
Fearful and joyous,
like an idiot before God.
~ Kerrie Hardie ~
Sunday afternoon, and although part of me cannot fathom this fact - we're actually settling in here. How can that be? And how bizarre is that? At any rate, it's true.
Today we received the definitive diagnosis of Acute Myelo Leukemia. There are seven types of AML - and which type Reid will be beating is still a question that waits for the lab to answer. The type is based on chromosome differences, and may steer the direction of treatment along this journey. (For more details about AML, please research online - Carolyn offered up a useful website in one of her earlier emails. And, I am reminded by a dear friend in the medical profession, to offer that you remember that the internet is a great tool - AND - it's the docs who have been through the years of training that answer our questions and know Reid and his particulars - who are our strongest resources).
He will start chemotherapy tonight. It lasts for seven days and, as I understand so far, it involves two medicines - one that is given for the first three days, and one that is continuous for all seven days. Chemo will essentially kill all the cells in Reid's bone marrow (where cells are produced). We're going to wipe the slate clean so that beautiful, mature, healthy cells can come back and take up residence in Reid's strong body. I have this image - for Reid - of a big, steep ski slope covered in several feet of freshly fallen snow - powdery and glittering on a very cold and "bluebird" bright January morning. The snow has wiped away all traces of other skiers tracks, and now Reid gets to make fresh grooves - alone, with the wind on his face and nothing to consider except the feel of his body on the skis and the energy and strength of his body as he gracefully flies down the mountain. This is what he and his new cells will be doing when the AML goes into remission after this course of chemotherapy. And for those of you who have ever seen him race, I know you can close your eyes and see him too. He's such a physically beautiful skier - moving more like a classical dancer - agile, smooth and moving as though without effort.
Tomorrow Reid will move up to "unit" 14K. The 14th floor is the bone marrow oncology center, and - it has a youth center, where Reid can play WII and ride a stationary bike, among other things. He sniveled a bit about how he can't expect to meet anyone interesting there - because all they're going to have in common is cancer, and then the nurse told him that Lance Armstrong was treated here. Boy, that stopped the sniveling in a hurry! So, now he's looking forward to the move. These two floors of homotological oncology are VERY infection careful. When you come of go from the sealed unit, you hand sanitize. Then to get into Reid's room, you do it again - as well as put in a thin papery gown, a surgical mask, and latex gloves. Yesterday, Jarrett and Daria (Davidson cousins), Stefan (Ransom cousin), Bethany (big sis), and Uncle Dennis were all lined up along the couch in Reid's room looking like the biohazard easter egg team, with their pastel colored gowns on. We thought a little glitter glue and some colored sharpies might be in order for the masks, too. Although - I'll tell you that one gets pretty good at seeing the smile on someone's face in their eyes - when a mask is covering their mouth.
This process is both describable and indescribable. I can report the nuts and bolts easily (though it's challenging to relay the medical terms - there is such a HUGE volume of information being thrown at us all the time). Our thoughts and feelings are harder to pin down. There's overwhelm, sadness, anxiety, frustration, shock, a sense of injustice - while nearly simultaneously, there is determination, hope, focus, positive intention, tenderness, forgiveness, patience, courage, love and gratitude. We here - feel all of you with us in some way. I know I will be saying thank you to you all over and over for the rest of my life, and I'm deeply honored to do so. While Reid is appropriately focused on and engaged in his main job - healing and moving forward with his incredible life, all of our family (I believe I can speak for them) and I are focused on standing next to him while he does his job. Your love is a source of strength to each of us.
The girls are resiliently doing their thing. Pete's home with them now, and thanks to all of you and the amazing schedule Carolyn has created for us, we will trade off being in Portland and Ashland. I miss them very much, and can't wait to gather them into my arms for a few days this next week when I head south for a short break.
Other than all this - what I can tell you too - is that your emails are fantastic! I love getting them. It's wonderful when I get to peel away to get internet (we can't get it in the room, I have to go to the 9th floor to cut/paste/and send this) ,and I open my gmail account - and there are all these tidbits of loving kindness -short or long, they're appreciated. I also have found text messaging to be incredible (you can thank Sarah for talking me into that two months ago!) It's much easier to receive and read a text than go through the voice mail steps. This information age certainly helps in cases such as this....whew. If you want to send something to Reid, I'm fairly sure OSHU has a website with mailing address info. and contact instructions. He can't have flowers or plants in his room, but he loves funny cards and interesting pictures and images of all types. He doesn't want folks to spend money on him.
I'll stop back by sometime soon and fill you in on how the treatment is progressing. I love and respect and celebrate each of you - yours, Martha
What’s Left
(for Peter Hennessy)
I used to wait for the flowers,
my pleasure reposed on them.
Now I like plants before they get to the blossom.
Leafy ones – foxgloves, comfrey, delphiniums –
fleshy tiers of strong leaves pushing up
into air grown daily lighter and more sheened
with bright dust like the eyeshadow
that tall young woman in the bookshop wears,
its shimmer and crumble on her white lids.
The washing sways on the line, the sparrows pull
at the heaps of drying weeds that I’ve left around.
Perhaps this is middle age. Untidy, unfinished,
knowing there’ll never be time now to finish,
liking the plants – their strong lives –
not caring about flowers, sitting in weeds
to write things down, look at things,
watching the sway of shirts on the line,
the cloth filtering light.
I know more or less
how to live through my life now.
But I want to know how to live what’s left
with my eyes open and my hands open;
I want to stand at the door in the rain
listening, sniffing, gaping.
Fearful and joyous,
like an idiot before God.
~ Kerrie Hardie ~
Day Three - Saturday, September 5, 2009
Saturday Night from Martha
(posted by martha cotton on September 6, 2009)
The long holiday weekend has slowed down reception of lab results, thus - we still have no final definitive diagnosis of the type of leukemia Reid is going to beat.
The wait frustrates all of us - including his Doc - who wants to start treatment. Meanwhile, it affords Reid time to slip in and out of snoozing. His morale is generally good, though the sore throat still plagues him. He's got such a great sense of humor - wicked and quick. It comes through at just the right moments. And yet, he's mainly sweet - letting me crawl into bed next to him and snuggling in together. He appears to be the one among us who is best at not getting too far ahead of things.
Bethany has been here during waking hours yesterday and today - watching and helping with Reid, and herding me toward food and rest. She's been a wonderful resource and support. She's sharp - and maternal in BIG ways. Her heart seems to expand while taking care of people she loves. We're so lucky for her....
Today, Jarrett and Daria showed up with their own brand of loving - very gentle, plenty of humor and soft eyes on everyone around them. The relief I felt upon seeing them both with baskets in hand and arms outstretched was HUGE!
I put out a call for people to come be here, to help me "team up" in this process - and the response has been wonderful. Stefan was here earlier. Dennis is here tonight (and taking Reid's side on all things that Reid is annoyed with Mom about!) - and the calendar that Carolyn is coordinating is a testament to the movement that's occurring. I had no idea how far away Portland could feel, and knowing that so many of you are making space to come be with Reid fills me with immeasurable gratitude.
Meanwhile - at home Pete and the girls are hanging in. Ginny is "freaked out" - her words, but being sweet and upbeat. Sarah is a rock. Her matter of fact Facebook posting today said it all about her - and her attitude - no nonsense Gracie, and not accepting the horror stories that "friends" feel compelled to share with her. She's so excited to start high school on Tuesday .... and soccer is her outlet. Hug her when you see her. The girls...well, it's a fine line - right? I know everyone will figure out how to love them and be positive - without making them scared by all the attention....
Okay - I'm rambling a bit -
it just seemed like - in the absence of medical news - I could fill you in on the rest of the story. And now I really must go attempt to sleep. Wanting and needing to sleep are obvious, getting the demons to back down for a few hours is a little more difficult, but I'm determined.
So - dear ones. I love you. Thank you. Kiss the ones that you love - make small prayers in each breath you take - send them out on the September sunlight - be well.
~ Martha
(posted by martha cotton on September 6, 2009)
The long holiday weekend has slowed down reception of lab results, thus - we still have no final definitive diagnosis of the type of leukemia Reid is going to beat.
The wait frustrates all of us - including his Doc - who wants to start treatment. Meanwhile, it affords Reid time to slip in and out of snoozing. His morale is generally good, though the sore throat still plagues him. He's got such a great sense of humor - wicked and quick. It comes through at just the right moments. And yet, he's mainly sweet - letting me crawl into bed next to him and snuggling in together. He appears to be the one among us who is best at not getting too far ahead of things.
Bethany has been here during waking hours yesterday and today - watching and helping with Reid, and herding me toward food and rest. She's been a wonderful resource and support. She's sharp - and maternal in BIG ways. Her heart seems to expand while taking care of people she loves. We're so lucky for her....
Today, Jarrett and Daria showed up with their own brand of loving - very gentle, plenty of humor and soft eyes on everyone around them. The relief I felt upon seeing them both with baskets in hand and arms outstretched was HUGE!
I put out a call for people to come be here, to help me "team up" in this process - and the response has been wonderful. Stefan was here earlier. Dennis is here tonight (and taking Reid's side on all things that Reid is annoyed with Mom about!) - and the calendar that Carolyn is coordinating is a testament to the movement that's occurring. I had no idea how far away Portland could feel, and knowing that so many of you are making space to come be with Reid fills me with immeasurable gratitude.
Meanwhile - at home Pete and the girls are hanging in. Ginny is "freaked out" - her words, but being sweet and upbeat. Sarah is a rock. Her matter of fact Facebook posting today said it all about her - and her attitude - no nonsense Gracie, and not accepting the horror stories that "friends" feel compelled to share with her. She's so excited to start high school on Tuesday .... and soccer is her outlet. Hug her when you see her. The girls...well, it's a fine line - right? I know everyone will figure out how to love them and be positive - without making them scared by all the attention....
Okay - I'm rambling a bit -
it just seemed like - in the absence of medical news - I could fill you in on the rest of the story. And now I really must go attempt to sleep. Wanting and needing to sleep are obvious, getting the demons to back down for a few hours is a little more difficult, but I'm determined.
So - dear ones. I love you. Thank you. Kiss the ones that you love - make small prayers in each breath you take - send them out on the September sunlight - be well.
~ Martha
Day Three - September 5, 2009
From: martha
To: Family
Sent: Saturday, September 05, 2009 5:25 PM
Subject: Re: a road map for september
I'm appreciating the wifi connection on the 9th floor while Dennis and Stefan are with Reid.
We've been waiting all day, still no lab report to begin movement, although they are going to put in a "pic" line (central line high on his arm that will allow blood draws, iv fluids and chemo all without further sticks). It's all about preparation right now.
Jarrett and Daria have been here most of the day. They are incredible. Period. A huge source of groundedness and love. Beth has been making sure I eat and herding me from time to time, which is okay for now. I then herd Reid - gently.
Today I met Duff, the OSHU social worker. We started a short list of concerns I have and a direction for that sort of support. (Reid's school status - a letter to financial aid to hold/defer his grant $, insurance questons, that sort of stuff).
Knowing that this map/plan is coming together has offered a sense of relief. I panicked last night - wondering how Reid and I were going to weather this alone. That sense of alone has fallen away. I know the next few days will be intense, and I have a sense that there may get to be a rhythm - weird, but something like a pattern. One phase at a time.
I'm looking forward seeing what the map says. In particular, I'm hoping to get home to the girls toward week's end - but won't commit to that until I have a sense of who all is going to be here. Pete will trade out with me, by the way - so he can be counted as one of the "two."
love to all,
Martha
To: Family
Sent: Saturday, September 05, 2009 5:25 PM
Subject: Re: a road map for september
I'm appreciating the wifi connection on the 9th floor while Dennis and Stefan are with Reid.
We've been waiting all day, still no lab report to begin movement, although they are going to put in a "pic" line (central line high on his arm that will allow blood draws, iv fluids and chemo all without further sticks). It's all about preparation right now.
Jarrett and Daria have been here most of the day. They are incredible. Period. A huge source of groundedness and love. Beth has been making sure I eat and herding me from time to time, which is okay for now. I then herd Reid - gently.
Today I met Duff, the OSHU social worker. We started a short list of concerns I have and a direction for that sort of support. (Reid's school status - a letter to financial aid to hold/defer his grant $, insurance questons, that sort of stuff).
Knowing that this map/plan is coming together has offered a sense of relief. I panicked last night - wondering how Reid and I were going to weather this alone. That sense of alone has fallen away. I know the next few days will be intense, and I have a sense that there may get to be a rhythm - weird, but something like a pattern. One phase at a time.
I'm looking forward seeing what the map says. In particular, I'm hoping to get home to the girls toward week's end - but won't commit to that until I have a sense of who all is going to be here. Pete will trade out with me, by the way - so he can be counted as one of the "two."
love to all,
Martha
Day Three - Saturday. September 5. 2009
From: Carolyn Anderson
Sent: Saturday, September 05, 2009 2:19 PM
Subject: Reid's Status 09.05.09
Greetings! I don't have much news about Reid's status for the day; I know he was scheduled to undergo quite a bit of testing, and we hope to have some results (including a more definitive diagnosis) soon.
A good source of info re: acute myeloid leukemia (AML) is the website for the National Cancer Institute. You can find it at www.cancer.gov and then navigate to "leukemia" and then AML. What I like about this site in particular is that it's not run by a pharmaceutical company (as are many of the medical sites), so there's no particular agenda presented. It's pretty straight-forward info.
I've set up an online calendar so we can coordinate peoples' visits at OHSU. (Thanks to Stacey Morgan for the calendar tip.) Many of you will have already received an email notifying you of your "membership" in the calendar community. Please confirm your membership and sign in, and let me know specific dates than you want to head north to support Reid. Please don't give me a range of dates or a list of dates you can't make it; just let me know when you are able to go, and I'll put you on the calendar. If you have not received an email designating you as a "member" of the calendar community and you want to go to Portland to support Reid, please email me and let me know. I've added Reid's family as "members," but I don't want to assume that non-family folks are ready to make such a commitment. Just let me know, and you'll become part of the virtual family.Thanks.
Carolyn Anderson
Sent: Saturday, September 05, 2009 2:19 PM
Subject: Reid's Status 09.05.09
Greetings! I don't have much news about Reid's status for the day; I know he was scheduled to undergo quite a bit of testing, and we hope to have some results (including a more definitive diagnosis) soon.
A good source of info re: acute myeloid leukemia (AML) is the website for the National Cancer Institute. You can find it at www.cancer.gov and then navigate to "leukemia" and then AML. What I like about this site in particular is that it's not run by a pharmaceutical company (as are many of the medical sites), so there's no particular agenda presented. It's pretty straight-forward info.
I've set up an online calendar so we can coordinate peoples' visits at OHSU. (Thanks to Stacey Morgan for the calendar tip.) Many of you will have already received an email notifying you of your "membership" in the calendar community. Please confirm your membership and sign in, and let me know specific dates than you want to head north to support Reid. Please don't give me a range of dates or a list of dates you can't make it; just let me know when you are able to go, and I'll put you on the calendar. If you have not received an email designating you as a "member" of the calendar community and you want to go to Portland to support Reid, please email me and let me know. I've added Reid's family as "members," but I don't want to assume that non-family folks are ready to make such a commitment. Just let me know, and you'll become part of the virtual family.Thanks.
Carolyn Anderson
Day Two - September 4, 2009
Hi, everyone.
The latest word is that Reid and Martha are comfortably set up at OHSU in Portland. They will be allowed to share a room together. It will be an "isolation room,"so no one gets in without a gown and a mask. Reid will likely start chemo tomorrow, and it's going to be a long haul. The initial word (from RVMC) was to expect a two-week stay, but OHSU is now saying to expect a month. The folks at OHSU are not quite so sanguine about the AML diagnosis, and want to wait for the bone marrow biopsy to come back before they make a truly definitive diagnosis. But they're going ahead with the induction chemo either way. We'll know more about the diagnosis (and, if it is AML, what type) soon.
Reid's doc wants him on fewer pain meds (for the horrible sore throat and aches/pains) so that he can actually be up and moving around the floor. Wants Reid to be treated as less "sick" than they were treating him at RVMC, says if you are treated sick, then you act sick. Martha likes his attitude.
Martha's exhausted, as you can imagine. Reid's spirits have been good, but the enormity of the situation is starting to sink in. Martha emphasized again that she would prefer not to be getting phone calls. . . she just got an online connection tonight, and so she might be able to provide email updates herself soon.
Please call or email me if you have any questions. More tomorrow, no doubt.
With love,
Carolyn
The latest word is that Reid and Martha are comfortably set up at OHSU in Portland. They will be allowed to share a room together. It will be an "isolation room,"so no one gets in without a gown and a mask. Reid will likely start chemo tomorrow, and it's going to be a long haul. The initial word (from RVMC) was to expect a two-week stay, but OHSU is now saying to expect a month. The folks at OHSU are not quite so sanguine about the AML diagnosis, and want to wait for the bone marrow biopsy to come back before they make a truly definitive diagnosis. But they're going ahead with the induction chemo either way. We'll know more about the diagnosis (and, if it is AML, what type) soon.
Reid's doc wants him on fewer pain meds (for the horrible sore throat and aches/pains) so that he can actually be up and moving around the floor. Wants Reid to be treated as less "sick" than they were treating him at RVMC, says if you are treated sick, then you act sick. Martha likes his attitude.
Martha's exhausted, as you can imagine. Reid's spirits have been good, but the enormity of the situation is starting to sink in. Martha emphasized again that she would prefer not to be getting phone calls. . . she just got an online connection tonight, and so she might be able to provide email updates herself soon.
Please call or email me if you have any questions. More tomorrow, no doubt.
With love,
Carolyn
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