I write this as the bad days (this time) are behind me. Sometimes I think (perhaps unrealistically) that I will be better prepared if I remember a bit about those days—sometimes I think amnesia is my best ally. I am now in the time period where my blood counts will go low, then slowly rebuild, and I will gradually feel better and better until the hospital days come again—that is, if all goes well and according to plan.

The days immediately after the 2^nd hospital round were the ricochet days. I looked up the meaning, to be sure I had it right and it seemed like the perfect analogy: ricochet: to rebound, bounce or skip off a surface, particularly in the case of a projectile.

So, the hospital is the projectile. It comes at me with the force of a canon and I have to surrender to it because there is plainly no other option. But the days after do rebound, bounce and skip in an unpredictable manner, and they surprise and they are dangerous, just like a ricochet off a firearm.

I walked out after Round 2 weakened and sleep-starved and nauseated and though it wasn’t as bad as the first time, the ricochet caught us sideways and reminded us that I am quite simply very fragile when I emerge from that environment. At home, or in the natural world, I wake up from a sound sleep when the wind shifts. I note and celebrate the currents of the seasonal world. It’s a train wreck for anyone to go through this process, and for a “Sensitive” (in the sensory world), perhaps the healing after intense chemo comes extra slow.

The only thing I can do is to retreat to my interior world where the outer trappings for life in the exterior world get put back to together piece by piece by the body, and gradually sleep and eat and walk myself back to life. I am not the best of company. I tried to use an old folk tale called Skeleton Woman to explain it to Elena. Hard to make it fit exactly but I keep coming back to how Skeleton Woman knew the man she loved could never love her in her bony form and so she used her powers and her love to put flesh on, and hair and rosy lips. But that’s what it feels like, to explain it mythically—the process of coming back to the world. Without going too deep, Skeleton Woman has been busy and she has had a lot of work to do to re-imagine ordinary life. I haven’t seen the last of her, I think…

My friendly outdoorsy husband has been incredibly present to this often austere relationship and complicated situation. I worry about him and he worries about me and we both tell each other repeatedly to “cut it out.” Bottom-line, he is heroically working through all the complications that I can barely focus on. Having cancer, as it turns out, is a busy life. Who knew? When you get discharged from the hospital, you take home a regime of pills and shots and many visits to the Seattle Cancer Care Alliance; to get blood drawn, receive blood products or more chemo or hydration. It takes up an amazing amount of time to sort it all out and do it all right. Sometimes, it is fine—and you go and smile at the other bald people, and you are glad to meet the Native woman on the elevator who brightly announces to all that “every day above ground is a good day”. Sometimes, you don’t look anyone in the eye because you don’t want to acknowledge that you are even there on a warm sunny day in March.

Ricochet days are dangerous because they bounce from the initial blast. You have the experience, and you tough it out and afterwards, your body re-lives it and grieves and shouts no.  At the hospital, I found myself going into a dark place to think, beginning with the hard questions at the end of the movie Planet Earth (can wildlife co-exist with people on this planet into the future? It is a disquieting subject to really focus on, if you are me). When I got home and started finding documentaries about Auschwitz to watch, I shook myself out of it. There was no way healing was going to come of those gloomy alleys. Much better choice was Steve’s Seattle Library selection: Music Within, about Richard Pimentel, who helped create the Americans with Disabilities Act.

Today, the day before Easter, was warm and sunny. I felt good enough to go for a 40 minute walk with Steve around Green Lake and I even wore my wig under a ballcap.  Felt funny but Elena told me—true or untrue—that I looked “normal” and besides, we agreed, everyone is focused on how THEY look, not me. She took me into Whole Foods. First time I have been in a store since I got diagnosed on Feb. 27. Wow. Overwhelming. You would think we came away with some wonderfully healthy food after that. Well, it was—for the soul. Pure wonderful cheesy nachos.

So, life in its new form evolves. Elena brought me a treadmill, so I can walk daily, twice a day, no matter what the weather. Steve and I love watching The West Wing, which somehow we missed when it was on TV. It is our evening ritual, maintained even in the hospital bed. I am able to eat and enjoy Steve’s hearty cooking. We still have humor, and we are not afraid to use it on each other.

Your notes to me urge me to feel the power of the Earth’s re-awakening. Thank you. Thanks to Skeleton Woman’s love and magic, I move again in human form, greeting this surging energy and most grateful for it.

My hospital reality: Nurse setting up the chemo.

The inner picture that feeds my soul: from a walk at Cargeek Park.

Back at the hospital. I had projected a lot of fear and despair into my memories about being here, remembering the sedation, the nausea, the tests, the darkness of chemo and so many people.  This time, the pace is slower; I recognize many of the nurses like old friends, I know the routine and, more, I know what to ask for. That means asking for nausea meds that don’t give me headaches or put me to sleep, and putting a sign on the door that basically says keep out when we need the quiet. I hope for less PTSD when I get out… but I am not sure about it. Five nights of peeing every hour while still wired on steroids can do a number on my soul. The poisons still drip with their accumulating toll. Dreams are the first to go, not to return until I get out.

I entered Saturday while Steve was returning from a short visit to the island with the companionship and support of Liza Michaelson and daughter Elena. Within hours, I was hooked back up to “Herman”, the ubiquitous IV Pole, and thoroughly on the Hospital Agenda. The IV Pole has to be unplugged from the wall and walked with me everywhere, even every hour to the bathroom. It is a tether, stopping any flow of spontaneous movement.

Rituxan was first on the list. This is one of the drugs that is actually specifically developed to tag (and kill) the proteins for my type of cancer. (wow, I am not used to saying that word. Cancer? I have cancer? I guess that still hasn’t sunk in.)  I like drugs that are specific. On the first night I was here this time, I began  a 24 hour dose of Methotrexate, the giant of the B-Round chemos. Within hours, I went from normal appetite to recognizing the slow approach of nausea, and then out came the anti-nausea meds and then the steroids, which pump me up so that I need lorazepam (Ativan) to calm me back down

Coming from a home where we make our green smoothies and take our probiotics, and enjoy raw food and religiously take our well- researched supplements (or at least, I do), it is hard to get it completely stripped away in this immune-suppressed, doctor-controlled world. And instead, you get first the chemo, then the rescue for the chemo. I love that one. First we will pump you full of this intense poison to kill all the hidden leukemia that we can’t see, but we know is there, and then after a few days, we give you a “rescue” to stop the cell-killing action. And when your level of this Methotrexate poison falls to a certain acceptable level, in 4 or 5 days, then you can go home and recover.

There will be other chemos in Round B, including the twice daily Dasatinib. This is the “Gleevec relative”, the drug that takes on the Philadelphia-positive chromosome. Before this drug, which was just approved, most people with this chromosome simply died. So, as the nurse practitioner said:  “it is a good time to have this kind of leukemia”. What’s a nettle-eating, smoothie-making wanna be locavore to make of all this? I take the pills they give me, and I don’t take the things I used to take now because my whole world is different. Raw foods could make me very sick, probiotics and certain vitamins are a definite, life threatening no-no.

I don’t fight this. I have surrendered to my own cognitive dissonance and the schedule drawn up by the medical team. I can’t make sense of it except to understand that this primitive way of killing off the body and stopping just short of really doing it is the only way they have right now of curing this disease. We may look back in 5 years and say wow, how barbaric. But without this blunt-edged approach, I won’t have 5 years. All this chemo… it’s like using a big rock to try and kill a little bug in soft dirt. You might do it. Or the bug might just burrow down further and not even be touched. And they know it and even say it.  Dasatinib is the only drug that I know for sure, and they know for sure, might really work. But under the theme that more is better, they use many other chemos, some that have been around for 30 years. So, I surrender. I take the pills. I let the chemo drip in and I try not to numb out. And, in the end, that’s the biggest challenge of all. How to allow this invasion with some grace—but not put up the big barriers that surround the heart and keep everything away—the pain and discomfort and confusion but also the vulnerability, the joy, the love and the healing. (See Ted Talks: The Power of Vulnerability. Very good.)

Which brings me to you, reading this. My heroic husband and dear daughters, my dear friends, members of my broad and vibrant communities, people I hardly know, people that I have lived alongside for years, strangers, old childhood friends … you have flooded me with your love and support. Your cards and messages and gifts and prayers neutralizes the chemo and the dreary effects of the chemicals.

This is what makes me strong.

Let me say this stronger. The power of your love and support took ahold of my oyster heart and pried it open. It could have stayed closed tight for a long time, maybe forever, while the soft body of my soul hid away from all that was happening.  But thanks to you: your strength, your insistence, your love— I couldn’t keep it closed. And when it opened, of course, I have to throw in the pearl—the analogy is just too tempting and well, obvious. But, there it is—shining and translucent, the treasure of connection—from my life to yours. I cannot even begin to utter the words of gratitude and appreciation that would do it justice. So, a simple “thank you” will have to do. You make all the difference, day by day.

Sitting here at the dining table of our lovely ‘cottage’–listening to early Saturday morning public radio, and wondering where to pick up and which strands to focus on.  Each day, nearly each hour, is different and a bit slippery to the ‘touch’.  I have never much liked to plan very far in advance—it has driven shann crazy over these 27 years we’ve been partnered and guess what?  I have my wish;  because now things are constantly in flux, constantly different, constantly new and unsure.  We go in for a simple blood draw that should only take an hour and we are at the clinic for 8.  Emmmm?  Be careful for what you ask for!

The morning run to SCCA:—an every day affair so far, and starting any where from 8 a.m. to 11 a.m.  Shann often needs some coaxing to sit up and start the day from her bed, which she needs to have to herself through the night hours (I sleep in the living room on a futon).  We often start with a ginger root brew with lemon juice and agave sweetener to chase down the twice daily regime of  meds, starting with our constant companion Dasatinib and always including anti fungal’s, antivirals and anti bacterial’s and white blood cell boosters.   Now that her hair is no-more it simplifies the regime.  Turn the heat down on the furnace (the thermostat is original 1950’s), get the files together, pack up the lap top for the waiting times and when there is the self-energy to ‘connect’, grab the puke bucket, look for the keys (today I spent 5 futile  minutes looking,  before I discovered that I had left them in the outside door when we came back yesterday—my life has thankfully been largely devoid of the need for locks, locking and keys)), and off into the hustle of Seattle traffic and I5 (also something that I have by and large insulated my life from).

Its now tuesday March 19th……..just coming back to this and no real energy to pickup the pieces above.  I walk these days with my eyes focused down at the ground—at where my feet are going.  Not really wanting engagement with the world outside of what is happening to us directly.  I want all my energy/focus to be spent here in ‘this’ bit of reality.  Angels come bopping in from time to time–the Seattle drivers amongst them, as they impress me with their courteous and unaggressive ways –or the man limping by on the sidewalk today, with the catywampus right leg and the biggest most beautiful smile on his face!

Hard watching shann (who is so brave and tough) lying on the table today, while Dr. PJ cork screwed out one and then a 2nd bit of marrow to be reviewed by the lab on the 7th floor—-checking for the bedeviling cancerous cells.  There is so much out of our control—Yes, we said yes,  and now its these mysterious spinal taps, and varying concoctions of drugs, and blood draws, and hydrations to bring up the low potassium levels and and and.   We had three hours yesterday after the initial blood draw, with an oncologist and then a ‘go’ with someone from finance, both telling us about the bone marrow transplant process (which hopefully will be coming up in a couple months).  I winced when the Dr. talked about percentages of success (something shann and I have assiduously avoided asking about), and again late in the day when we found out that we in fact did have to come back into the hospital starting this weekend for another week or so—the beginning of cycle 1B—-but boy is it hard on Shann, as they give her little alone time to rest/sleep

Enough enough—Spring arrives tomorrow and our friends are now on the Inca trail and the little stone I gave them to carry up for us, is no doubt being passed from one to the other of them as they hike toward macchu pichu.  When Shann is better and if the gods are with us, we will walk north to south across the Grand Canyon …..something to look toward!

In the quiet kitchen, I write while my two most worthy and stalwart caregivers, Steve and daughter Elena nap. Their brief rest is so richly deserved, I hardly want to make a sound to disturb them.

Sleep for me comes and goes throughout the day, moments of fatigue when I can hardly hold my head up are coupled with long nights of tight muscles and restlessness.

Last night, during those time-stretched hours, I finally started to wake up emotionally. I started being aware that I had something like PTSD or acute stress disorder a few days ago. It is something you can “get” in many ways… basically anything that threatens your well being in a major way will do it. And that includes a diagnosis of a life threatening illness. When I finally looked up the symptoms of either, I fit as many of them as I did leukemia. The feeling of being “flat”, and outside of the normal reality is a major marker. I noticed that my eyes wouldn’t hang on to the outside world. My focus narrowed. I cried regularly when reading notes but the rest of the time, I just felt numb. Basically, I just wanted to curl up in a ball.

Slowly, so slowly, my own awareness swam through unnavigated seas to some shore with the rope in her teeth, found an anchor and stopped the endless drifting.  I never would have guessed that the anchor was grief. But when I felt it, I knew its strength and the numbness flowed out through the tears. It birthed the first healing that must take place before the body can be cured: first the soul must allow the deepest levels of anguish that it has been holding.

Since my boat ran into this rock, I have just been bailing and not looking up to see what the extent of the damage or how far from shore I was. And last night, I realized, I just don’t know the answers, and actually, no one does, and so bailing is all I (we) can do. Today was the day we had planned to be in Peru, on our way to Machu Picchu. Less than a month ago, I was packing, planning our travels in Ecuador, finding the very best shoes for the Inca Trail. There was a vague fatigue at the edges, but I had not yet begun to relinquish the trip. Now that seems like some fantasy, along with a freewheeling energy that loved to roam over hill and dale.

Grief will help me keep from having some kind of hardened PTSD. I welcome it. My life has changed, so have the lives of my husband and daughters, even the life of our big black dog, who just a month ago was our constant companion. Our lives changed. Dramatically. Abruptly. Powerfully. I think it is okay, even necessary, to mourn that change for all of us. In every way, it brings me closer to the suffering of the world, and to the ways that this happens to people and animals all the time, everywhere. I feel a huge compassion opening deep inside the edges of my own story.

Okay. Enough. I just learned today that I will be admitted back into the hospital on Saturday for 8 more days of intense chemo, Round B. Now that I have allowed grief to enter my numbness, I feel a chance at least of holding some sacred space inside myself; not armed, not intellectual and or necessarily optimistic, but simply open hearted and mindful.

The hair came off last night. I don’t think there are many words I can add to the picture. Definitely different.

Maybe I thought there would be a poem or a big feeling to accompany this event. But mostly I just look at this picture the way you might. Like, wow. She looks different. We look in the mirror many times a day, just to check up, you know? Make sure the spinach isn’t stuck between the teeth, or do the short comb through. Imagine, you look at your reflection and you see someone but you have no idea who it is. Without her familiarity, is she a stranger? Or did the familiarity always mask the stranger that lives within us? Mostly I will wear the hat, scarf and even the wig so as not to scare little children. But I just have to say…. with compassion: sure it is cold with a bald head.

Ready for the Monastery.

O the wonderful cards, I have gotten. A woman walks with her spirit bear, the beauty of the islands, funny, inspirational, pure beauty. Thank you so much to all who filled my day with messages of love, by card and by email and FaceBook.

  One card sits right next to my bed. It is of an exhausted Hawaiian in a canoe   surrounded by endless rough seas. As he slumps in the middle seat, two spirit angels take over bow and aft with strong arms and clear direction. I am in the middle seat now. Angels steer the boat. The image strengthens me.

Yesterday, after hours of dripline at the Seattle Cancer Care Alliance….hydration and platelets, I had enough energy to go for a walk with Steve in lovely Ravenna Park. Flowing water and little waterfalls, flowering trees, skunk cabbage, some lovely big cedars. It was really quite wonderful. Cool fresh air, birds singing. Much healing. My walk is slow but lasted 40 minutes.

The same night, we had a real family dinner for the first time. I even tasted alcohol free wine (ugh). I had something like an appetite. I could savor most the food. The famous chemo mouth sores make it tender but so far okay. now It was absolutely wonderful to sit at the table with my family and talk about something over than leukemia. We even retired to bowls of popcorn and watched 50/50, a movie that Mariya told us we would enjoy because it was about cancer but had a good outcome. And it was a good movie. Some pretty gritty stuff about chemo but a good dark comedy. We all enjoyed it.

Yesterday, I had one of those days that don’t show up on the plans. Ah, we all have these, all the time, don’t we? I have a favorite saying Humans plan, God laughs. Or something like that. So in the morning, I went into the Seattle Cancer Care Alliance (SCCA) for the scheduled bone marrow biopsy and instead, due to low potassium and fluids, I went into AFib, a rapid irregular heartbeat with a pulse of 140+. This caused great consternation, including a Code Blue—where from my perspective the room was filled with people all intently staring at me. The decision was made to transport me by ambulance to the hospital, Steve following by car and somewhere between talking to the nice medics (such good people) and them explaining to me why we were using the siren in Code Pink (just so we don’t have to wait through multiple lights), my heart spontaneously converted to the its normal rhythm. So no big guns (so to say) were needed.

They did make me hang out in the ER for quite a while they monitored the heart and pulse (now normal) and filled me with liquid and potassium. Then back to the SCCA for a long chemo drip, complete with Benadryl that knocked me out, and then followed that with a blood transfusion. By 9PM, I was done. Sweet girls came and went, then Steve and I went home and had dinner (and more pills) and watched West Wing, and that was the day I did not plan.

Today, my plan… and I hope I am allowed to make this happen, I will go with my daughters to get my head shaved. It is time, rather than let it fall out bit by clump.  I don’t know how this will feel. Our hair, you know, such a big thing. Maybe it will all be a big relief. No bad hair days. No expensive shampoo. I do know it will be the badge of cancer. All those things you can kind of hide inside suddenly become the big banner to the world. The “private –I’m –Okay” part of me flinches at this. For this reason, I also got a wig, which I may use for the times I just don’t want to be Cancer Lady in public.

Well, more than enough for now. I just wanted to get this down before the next thing happens. I send you all love, light and gratitude. Delight in the emergence of sweet Persephone, entering our world the gift for new growing life. Don’t forget to celebrate Ireland on St Patrick’s Day! And yeah, and the Spring Equinox is coming up soon. Balance, my friends, it’s all about balance. Examine your lives to see what needs more balance (quick and dirty guess… you need more rest, exercise and play). Try to give away the things that make you sick or sad and pull in more of the ones that make you happy and calm. The seasons truly show us how to live.

Its Sunday afternoon and shann is napping.  A quick overview; Mar’s fella Will, has left and headed back to their Calif. home—Mariya to follow next week…..both have been ‘huge’!  We were on  a regime of everyday visits to SCAA (seattle cancer care alliance)—-we asked for a day off after yesterday’s outing and so we get to keep a low profile all day today!  The second time now in two weeks of this new reality.  Everything that was the normal and the routine is now topsey turvey—The new reality is that its all different and all the time changing.

It seems that each persons cancer (and body) is slightly different; so to is the ‘cocktail’ of drugs that they receive to treat it.   Shann is doing dasatinib and vincristine and half a dozen other drugs, including steroids and white blood cell boosters—more info that anyone needs to know I suppose—-and is coming along pretty darned well—getting to sleep uninterrupted through the nights and away from the hospital (as great as the staff at UW Hospital is) has been grand.  Our ‘cottage’ life is settling down—am making soup today and shann and I have started back into watching the West Wing for the first time since this all came crashing in two weeks ago.

Think I’ll make a run to the store while she sleeps.  Regards to all you Shann fans out there and a request;  Business gets to come to me and not shann–her job is to heal, 100% of the time—-and that healing of course includes getting jokes and notes and antidotes from you, her fans……

Not very literary—-just a bit of information—–steve

awaiting shann to finish a shower—Mariya’s fella Will ,coming up shortly to help carry stuff down to the van—which has been parked in the subterranean surgery parking area for the pat 8 days at the U.W Medical Center—my mobile office/bedroom/home away.   We are now officially through the first part of cycle 1A; hospitalization and the first infusion of heavy duty chemo—designed to kill all the bad guys—along with an awful lot of the good guys—now its R&R at our ‘cottage’ located in n. Seattle in the maple leaf section of town —we will be making posts on this blog from our bungalow, as shann slowly heals and then we go in for the next cycle 1B in about 2 or 3 weeks..  Time to get a move on—-wifee beckons—I bet she is going to love the fresh air and am hoping we both get comfortable with the cottage—I have been there once for 1/4 of an hour and she has yet to see it.  Daughters and family and friends have spent hours cleaning and getting it ready for us…..So many angels out there hovering……Steve

Daily life flies into brick wall. You go along, you don’t feel well, you finally decide to get some tests and at the end of the tests you get the Diagnosis: Philadelphia chromosome positive, Acute Lymphoblastic Leukemia (ALL), B-cell.

Not knowing what to think, you take a day to prepare, not knowing for what or how long or anything.

The first few days here were so busy that I hardly had time to breathe. Things are slowing down now. The bone marrow biopsy confirmed the presence of leukemia. A spinal tap injected chemo directly into the spinal fluid. They tested every little function of my body, including an ultrasound of the heart. When I mentioned I might have a sore throat it prompted a throat swab and high isolation for two days so that Steve and Elena both had to wear masks and gloves and gowns to be in my room. It was a great relief when that came back negative.

I have a Hickman Line, basically a type of central venous catheter used for the long-term administration of substances such as antibiotics, blood transfusions, nutrition, or chemo. The Hickman is attached to me permanently and it spares me the bruising pinpricks of numerous blood draws.

I have a cocktail of things regularly pumped into me. And they draw out blood for testing on the same line. My IV pole is now my tether and my constant companion. I have named him Herman and I try not to mind his little beeps and sounds. I drag him around for a walk twice a day, 10 rounds around the hall equals a mile. Two miles a day is my goal for now. I don’t always make it. It is a love hate relationship, but through Herman, I receive not only all the chemo (well some is oral too) but also life saving fluids, anti-nausea, anti-fungal, antibiotics, etc etc.  So far, I have also received several  blood transfusions through Herman. Blood clotting agents, Vitamin K, whole red platelets. All those times you have given blood…I am the one getting the benefits now. Thanks for that, by the way.

The steroids they give me cause an insulin resistance that spikes the blood sugar. So for the first time in my life, I submit to blood sugar tests and then get an insulin shot before I eat. I am humbled by this, knowing home many people walk around with full blown diabetes everyday. We all have our battles.

I can’t say enough good things about WHERE I am. If I had to come down with this, it is the best place to be. A friend of mine emailed Brian Drucker, who is one of the highest authorities in the field of Leukemia. Here is what he said:  “The treatment for acute lymphoblastic leukemia can be pretty brutal, but the disease has a reasonably high cure rate. A bone marrow transplant might also be considered if she has a good match. Since she has the Philadelphia chromosome,  Gleevec or one of its relatives would be used. UW is a great place for her to be.”

Strange comforting words, in their own way. I just have try and survive the treat. I am on a Gleevec relative called Cyclophoshamide and the newest and best medicine, so the big deal now is to keep me tolerating the chemo while it is killing the leukemia. I hope onto the doctor’s comment that “the leukemia cells are literally dying by the hundreds of thousands right now.” Along with the rest of me.

We have a new definition of Home. Home to the doctors here is a place they can send me which is within 20 minutes of the Seattle Cancer Care Alliance (Fred Hutchinson Center). This treatment for Acute Lymphoblastic Leukemia is interspersed with hospital intensive chemo and blood transfusions for 5 days, followed by me being able to go “home”. Then for 2-3 weeks, we watched the blood counts and hope they come up. When they do, and I feel better, they will hit it again, back in the hospital.

So part of the new normal is a small cottage that has been made available to us. The island community, has helped us create a place we will call the Cottage; And that will be home for awhile. By summer, I may be ready –hopefully–for a stem cell transplant. That will require a good 2 weeks of hospitalization and then more time at the cottage. My goal is simple: If I can fight back all the things that are trying to kill me, and my body can recover, I may granted a leukemia-free life again.

Jack the dog has gone to live on the island with Josh and Julie, our house sitters. I want you all to know how deeply I feel the connections that I have been showered with. Thank you. My nights have been so difficult with nausea that the days also pass in a blur. Thus, I hope you might understand that I am not up to entertaining visitors at this point. The best for me really is email or snail contact right now, rather than phone calls. Steve and the daughters have been utterly amazing, so tender and connected. I am indeed a blessed woman. And I am most grateful for the love and support of my friends and community. So many of you have written some of the most wonderful things I have ever read. My own responses will be slow and will fight with fatigue and nausea. But keep them coming. They mean so much.

Elena has to suit up to be in my room for 1st 2 days.

Steve takes a map on bench, in full gear.

One of our many chats. I could never do this without my family.

Jack and Steve say hi from the canal.

My favorite artwork here.

Getting ready to go bald.

Mariya, Steve, Elena .. .
superstars!