On your birthday

Today is your birthday, a day to recognize and reflect on the blessing of your arrival here amongst us.  It seems a strange and rapid transition to be celebrating this occasion only three days after observing the first anniversary of your departure from your physical body.  It is, however, also very befitting to honor and remember you through the full spectrum of the emotions these days bring to the surface as you were the queen of rapid transitions of all kinds.  You could turn a sorrowful moment into a playful one as quickly as a passing storm is vanquished by the suns rays, revealing the intense beauty of the landscape and sky all the more starkly.

Three days ago, on the anniversary of your passing a storm very much like that came through.  It was a surprise as in the predawn light there was hardly a cloud in the sky and it was sprinkled with winter stars.  Shortly after the break of day I hiked up the bluff above Tesuque Creek, as I had done the year before, and already a wash of clouds had swept in from nowhere, with hanging tendrils of grey threatening snow.  As I crowned the bluff and pulled out my flute to play a song lazy flakes began drifting down only to turn into a vibrant snow flurry that dotted the air between me and the trees below and sent tumultuous breezes through the piñons and junipers.  Within a few minutes and as quickly as it had appeared it was gone and in its aftermath the sun beamed through the gaps between the passing flock of straggling clouds that followed the squall up into the mountains. It felt like a whisper from you.

During this past week I have felt into a much deeper heaviness than a passing squall can bring, remembering with sorrow the difficulty of the suffering that you went through and the sadness felt during your last days here.  This difficult remembrance, while not unexpected, surprised me with its intensity.  Now, on this anniversary of your birth I will myself to remember the powerful and joyful experiences of your life and lessons you taught through this living, and to know that beautiful gesture you shared with us in life that should rightly be a large part of your remembrance and legacy.

IMG_2635I remember your ability to be present with each experience in life. For instance, you never liked to mix your coffee with breakfast lest the enjoyment of the coffee be lost in the background, and few knew how to enjoy a simple cup of coffee like you with full focus and awareness of its taste, the feel of the warm cup in your hands and appreciation for the privilege to be able to enjoy that morning ritual.
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I remember your intense love of your friends and family that you expressed with unbridled enthusiasm and vulnerability.
 

I remember your motivated and passionate engagement with the outdoor world, your graceful and determined use of your body’s innate and exceptional power and endurance to take you out into the forests, mountains and rivers that you loved so much, felt at home amongst,  and in which your true inner spirit shone and your contentment beamed.

I reflect on your dedication to your work in life, your teaching, that you threw all of your will, creativity, heart and soul into, most importantly with your beloved students at Winterberry Charter School, but also with your family, friends and community with whom you shared your love and passion for yoga and all of life’s learnings.  I remember your dedication to that learning and growth which never for a moment stagnated but always found fresh and fertile grounds in which to expand.  I reflect on your passion for all of these things, and more, that matter in life.  With love and admiration for the brave soul you are, I will remember and love you always.

Namaste,

Monty

inthewind

The most difficult journey

It has now been over 6 months since Suzi left her body behind and this weekend the community that new and loved her is preparing for a celebration of her life. In this time I know I have not been alone in learning to navigate a world that feels diminished by her absence. The degree of this sense of loss is tempered by how large a role Suzi played in each of our lives, but certainly I know it is felt acutely, even outside of her immediate family and friends. I also know that there was a sense of disconnection for many during the last months of Suzi’s life as the places we ended up spending that time were away from her closest community. As I have done my own processing of Suzi’s passing I have recollected and reflected on those last months lest those precious days with Suzi be lost to memory’s fleeting grasp. I have also heard from many people that they would like to know more intimately how things transpired in that time and in doing so better understand how things unfolded both outwardly and inwardly. What follows is my recollection of the time from our last days at the NIH to the end of Suzi’s life. Certainly many details have already been forgotten and even more of the experience is lost in my own limited perception and the translation to these words, but I have done my best to portray a sense of the events, the places, and most importantly Suzi as she bravely navigated this most difficult of journeys. It has taken more time than I ever would have thought to pull this memoir together, and even more so to edit and polish it to the point I felt ready to share it with a broader audience, and in a way for which I felt Suzi would approve.  For those who would like to know more of her story please read on. Also for those who might not, which I understand as it is not an easy story, I will remind everyone of the Celebration of Suzi’s life and spirit, at our cabin just past milepost 48 of the Seward Highway in Summit Pass, Alaska this June 9-11 . The main ceremony and celebration will be on Saturday June 10th starting at 4PM campers are welcome, and we will be sharing a potlatch meal, and stories, poems, songs or anything else that people bring to share with one another, follow by live music into the evening.

Freedom

During our last days at the NIH our friend Erin graciously flew down from Alaska to visit us, the third of our close friends to make the journey to support Suzi in hers. In advance of Erin’s visit I found myself wondering what Erin would do, we were essentially done with the treatment here and just needed to get a pass to head out. In similar fashion I had wondered what our friend Kim would do when she arrived the week before as at that time we had already begun the “recovery phase” – that was the day Suzi landed in the ICU and Kim’s shifts watching Suzi while she worked on a beautiful mandala for her gave Linda and I much needed recuperation from the round the clock time shifts were sharing by Suzi’s side. When Erin arrived it was again immediately apparent why she had come when she did. Of all of our friends, perhaps none are as in tune with all things furry, feathered, leafy, and as fond of nature in all her hues as Erin, and she had come just in time to help reintroduce Suzi to the outside world. On Erin’s first day she took Suzi on her first trip out of the confines of the hospital in three weeks – the first day outside since she had received her T-Cell infusion. It was both a welcome reintroduction and an emotional release for Suzi, whose own wild inner self had been held captive within the rooms and hallways of the NIH’s building 10 a bit too long for her liking or inner well being. Suzi had lobbied the staff with Erin’s help to not only head outside into the courtyard but to do so not in a wheel chair but in the hospital room recliner. The wheelchair was still too uncomfortable for Suzi with the persistent edema in her legs that had been exacerbated in the ICU. Happily the recliner’s undersized wheels, designed for wheeling it within the hospital room, still proved adequate for making the few transitions through doorways, in and out of the elevator, across the cracks in the sidewalk and out into the courtyard. Once in the open air with the courtyard trees around her and blue sky over head tears streamed down her cheeks. Through the days of Erin’s visit I could be sure to find her and Suzi in the wooded courtyard below Suzi’s room, sitting, reading, doing simple exercises. They had devised a method together to even allow Suzi to relieve herself without making the arduous journey back indoors utilizing the cover of a gown and a blanket strung over the walker, a technique that proved essential in enabling our further outings that week and in those to come.

After the long stint at the ICU it had become clear that the best plan at this point was for Suzi to stick around for her next infusion of pembroluzimab on Sept 29th, – scheduled every three weeks – rather than to leave the NIH only have to have to turn around and come back. The weekend before this last infusion we arranged for Suzi’s first trip off the NIH campus since our arrival for the treatment. Dr. Goff agreed that given her steadily recuperating state we could head out for the afternoon as long as we didn’t go too far afield. Our proposal to head to Great Falls National park, about 30 minutes away, happily won her approval. Handily our friend Cameron had a metallic blue 1978 Volkswagen bus that would easily allow us to bring the wheel chair on our adventures. The first trip out was on Saturday September 23rd and Cameron showed up in his shiny blue bus to whisk us away.

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Cameron and his classy bus, ready to whisk Suzi away form the NIH

Our first stop was Whole Foods where we assembled a formidable picnic. I was concerned to see what an effort it was for Suzi to make the extra transition in and out of the van and a relatively long walk into the store, across a noisy and uninspiring parking garage. I reminded myself to make sure we were more efficient and intentional in how Suzi spent her energy moving forward.When we arrived at the park we were pleasantly surprised to learn it was Public Lands Day and there was no entrance fee, perhaps overly joyful about this, we had become happy for even the small pieces of good fortune that came our way. The rest of the day was spent in the park lounging around a picnic table watching the other urban nature lover’s enjoy the splendor of the day and the beautiful falls of the Potomac River.

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Cameron, Suzi, and Erin enjoying the view of Great Falls

After lunch Suzi challenged herself to walk and made a journey of about 200 yards across the uneven terrain with the support of her walker. Once at the falls she sat back into her wheelchair and enjoyed, with her inimitable appreciation, the view that years ago might not have seemed so remarkable to our adventure seeking selves, but today was a welcome and inspiring gift. After that we all found a quiet piece of grass to nap in before working our way back to the NIH.

 

The following day Erin left, having done her work reintroducing Suzi to the outside world in such graceful fashion. Cameron however agreed to be our chauffer and guide for another day, and for this adventure we chose the tidal basin in downtown DC. The tidal basin had a paved wheel chair accessible trail all the way around it that wound through several memorials including those of Jefferson, FDR, and MLK. It turned out to be a perfect way to spend the day walking under a blue sky reflecting on the foundations of our democracy while the country was embroiled in a heated and divisive election. Suzi and I were particularly taken by the FDR memorial, also a favorite of Cameron’s, in a large part for its aesthetic Landscape Architecture, which was incidentally his career and passion. IMG_0162-2We ran our fingers oer the quotes and images and settled into a lunch in a shady, quiet tree strewn area near the water for lunch. The long tour around the basin in the wheel chair proved to be plenty of exercise for all of us and we came back to the NIH happy and rested, introspective after the day’s tour of American history and the quotes of some of its greatest visionaries.

The rest of the week went uneventfully, the last couple of days Suzi was allowed to stay at the Lodge with me while we awaited the final pembroluzimab infusion and discharge from the hospital.

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Taking time for a swing on the way from building 10 to the Lodge at the NIH

On that final day spirits were high for everyone. Ornela was near giddy with enthusiasm over Suzi’s treatment, something that instilled an optimism in all of us, though I noticed a more tempered approach from Dr. Rosenberg in particular. Our trip back to St. Louis was relatively uneventful though it did highlight the difficulties of airline transport and made us both thankful we were not headed back to Alaska and the long 15 hour travel day it would entail.

On Our Own

When Suzi and I returned to the NIH three weeks later for our first follow up visit, it was with a sense of foreboding that each of us had kept to ourselves. In order to keep this sentiment at bay I had been steadfastly focusing on the present day, ignoring what might lie ahead for the threat it’s uncertainty could unleash on our ability to enjoy the moments we had.

I had gone back to Alaska for a week during our three week stay in St Louis to further prepare the house for our eventual return, working long hours after my day job to rough in and pour concrete for a walk in shower. This was a project Suzi and I had envisioned for a while, but now in order for Suzi to return to our home a walk in shower would be a necessity. Her mobility was still so limited that the idea of stepping in and out of our clawfoot tub on the third floor was out of the question. I managed to do all of the critical work and had a friend lined up to complete the tiling so we would have a functional bathroom to return to. When I returned to St Louis Suzi, to my surprise, was in the car with her dad to pick me up. My first thought was that she looked better, I couldn’t help myself from stealing a look at the bumpy nodes on her upper left chest, and it seemed they were a bit smaller. The aftermath of a horrible rash that arose as a response to the pembroluzimab had begun to ebb but still left even her scalp covered in red dots along with the rest of her body. She looked at me sweetly and somewhat shyly, unusual for Suzi but with her rash and bald head I could only imagine a hint of modesty had crept in. It melted my heart as I leaned over to kiss her and hug my wife and love, the courageous soul I had missed so much over the last week. It had become so hard to be away from Suzi at this time – things could change so quickly for the better or worse and I could barley stand to not be present for whatever changes were happening.

Over the course of the next ten days Suzi and I settled into a pattern of waking several times during the night for pee breaks, something she needed help with in transitioning into and out of bed and with the deconstruction and reconstruction of her pillow pile to keep her legs elevated and body comfortable. Michael and Linda took turns helping with this evening chore as well. The edema that had crept into her legs over the course of the NIH treatment had not subsided and meant her legs required careful management throughout the day and night to help reduce the swelling and pain associated with the movement of the lymph fluid as she was still carrying around 30 lbs of extra fluid in her swollen legs and torso. Sometime in the morning Suzi would motivate out of bed, we would do the day’s care of her wound and ostomy, her morning shower that she enjoyed thoroughly, and then move into breakfast. As I settled into my work day sporadically scheduled therapists would come to see her. In the evening I made it a point that we get outside. We both found the city life a bit stifling and it was easy with Suzi’s limited mobility to consider forgoing leaving the house, so I felt all the more compelled to make sure it happened. We spent most of those evenings in St Louis’s City Park, me pushing Suzi in her wheelchair along the paved bike paths, occasionally finding a spot on a lawn to throw out a blanket and lay down.

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On the pathway in St Louis City Park

Getting down to the ground was relatively easy, but getting Suzi back up and into the wheelchair had become more difficult, a maneuver that had to be thought out and planned for before sitting down on the grass. Over the course of those 10 days, to my souls torment, I had watched as the nodes on Suzi’s upper chest, barely perceptibly, seem to enlarge. It was subtle enough that I could convince myself that they were just changing, some shrinking others seeming slightly larger, but to my unsubjective mind, there was a perception that they weren’t shrinking. Suzi’s left arm also continued to swell up with lymphedema, and this too seemed to be trending in the wrong direction. So when we returned to the NIH even our work at pushing these thoughts away had slowly been undermined by the thought that the treatment might not be working as we hoped.

 

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Suzi on the Lake front in St. Louis City Park

Throughout this time Suzi evolved a profound patience and composure in the face of uncertainty and her ever more mobility challenged body. During the sunny evenings in the park she would smile sweetly to me, or languish happily on the ground watching the robins forage in the evening light. Exploring the parks nooks and crannies was something we were both able to find wonder and solace in and many laughs and smiles along the way. Our first night in DC we went out to a favorite local restaurant, a hip taco bar, with Suzi’s childhood friend Erica. We enjoyed ourselves much like everything was normal and we weren’t going to hear news that would effect Suzi’s and my fate in either one direction or another within two days time. It was as remarkable to me as ever how able Suzi was to be present in that moment and not preoccupied with the uncertain and as yet unreal future.

The following day we arrived at the NIH and went up to the apheresis unit where two familiar nurses were awaiting us ready to circulate Suzi’s blood out of one arm and back into the other while siphoning off a sample of her immune cells so they could better understand how her hyper-charged population of T-Cells had proliferated and survived in her system. The nurses had heard about the terrible rash Suzi had gotten from the pembroluzimab infusion, a parting gift from the NIH after our last treatment. It had been so severe that pictures of it had made it into a weekly presentation to the doctors, a scalp to toe urticaria that had left a scaly coating over her arms and legs in its wake. Immediately one of the nurses began to second guess the idea of doing apheresis on Suzi, her left arm had become so swollen with edema that finding a vein would be hard, and she suspected Suzi to be anemic, indeed the blood tests she ordered confirmed that. After some discussion, a quick physical from one of the immunology fellows and a phone call to Dr. Goff the decision was made to forgo the apheresis.

Scans were completed over the course of the day and Suzi and I were eventually sent home to our hotel. That night, Suzi broke down at one point out of nowhere.
“I am not preparing myself to hear good news tomorrow!” she said through a short but decisive sob. I had to admit to myself that I had not prepared myself to hear good news either but had been slowly steeling myself to be able to accept whatever news did come and support Suzi in that moment. We had been through so many of these thresholds together over the last years, I remembered that the uncertainty leading up to these moments was always harder than coping with whatever good news or bad news came, but it didn’t make it any easier. In the uncertainty I would find my mind attempting to hold radically divergent realities and everything in between. The range of emotions that I would futility attempt to prepare for, from elation to utter despair tended to tie my insides into knots. I could only imagine how it was for Suzi, surely more intense, but at the same time she had a composure and a cut-to-the-chase demeanor with the doctors that made it clear she was eager to move out of the uncertainty, wherever it led.

The 20th of October arrived and Suzi and I made our way from our hotel back to the NIH. A day of visits had been scheduled, most importantly of them the meeting with the Immunology Doctors to learn the results of the scans and the future that lay ahead of Suzi and I. After spending a long morning in the ophthalmology department of the NIH we were finally seen by an exceedingly pleasant ophthalmologist to assess what was presenting like pink eye in Suzi’s left eye. She diagnosed an unconcerning cause and she gave us a simple protocol for treatment. Then we were off to 3 SW to meet with the immunology team. The attending physician had changed guards at the end of September and now Dr. Kammula, the original physician who we met on our first screening visit to the NIH almost a year ago was on call. Dr. Goff to our disappointment was not attending the meeting but we held out some hope that we would get a chance to speak with her. After a short wait Dr. Kammula, Ornela, and our research nurse arrived to speak with us.

Dr. Kammula first asked Suzi a litany of questions about how she was feeling, where she was experiencing pain and did a rather thorough physical over her body. Finally we got to the point of discussing the scan results. Dr Kammula’s lips pursed and he lowered his head and looked at Suzi over his glasses.
“Unfortunately your cancer has progressed since you left here.” He relayed with a sense of dismay but also a certainty and finality that left little room for negotiation. I looked at Ornela and her eyes shifted away with an unsure look of sorrow. He continued explaining that the treatment had not worked as hoped, and that furthermore given Suzi’s weakened condition and current blood chemistry he didn’t recommend any further treatment, of any kind.
“Unfortunately there is really nothing we can do for you.” He concluded
With Suzi’s consent I followed up with a list of questions I had prepared, covering all of the alternative treatment options I was aware of, even though I understood from what I had learned they held little promise of a cure for Suzi, only the possibility of more time or a higher “quality of life” with the time she would have left. It was a hollow line of questioning that my mind moved through out of some route instinct. Dr. Kammula admitted either little knowledge of these options or little enthusiasm for them. Ornela reminded us again and again “If there is anything we can do for you … anything please ask and we will do it”
This interspersed with Dr. Kammula reiterating there was really nothing more they could do left my mind spinning, was I hearing things correctly or not, what did they mean they would do anything and there was nothing more they could do. To my broken spirit the words made no sense.

Finally Suzi looked at Dr. Kammula and asked directly what she was supposed to do now.
“Unfortunately Suzanne this Cancer is taking your life.” he responded.

The words left a dull echo in my head. In Suzi’s I couldn’t imagine their purport. The rug that had been slowly disappearing beneath us had now been completely pulled out from under us with those simple words. The doctors and institution that we had put our faith and hope in, that had held the burden of the unknown for us these last two months, that had carried the responsibility for Suzi’s health through the crazy acrobatics of modern medicine, were now, unceremoniously, sending us packing. Beneath us now there was only the abyss, uncertainty and somewhere in the not too distant future, if we were to believe Dr. Kamula, death waiting.

“How does this happen?” Suzi asked.
“Well … typically through organ failure, right now the muscular skeletal pains you are experiencing from cancer will continue to bother you but they won’t kill you. The tumors in your liver are progressing but it is hard to say when they will cause this. It is really hard to say how long, I would only be guessing.” While I sensed a caring hidden in Dr Kammulas eyes, his words came out clinical and dry echoing the austere hospital room they were being delivered in.  And they were almost the worst answer to the question we could have imagined. The slow torment that Suzi was going through wouldn’t kill her, only torment her more and more until some unknown, uncertain, growth of the cancer finally compromised her enough to bring about what at that time would likely be a welcome end of life.

Strangely I had no emotion. Suzi’s eyes welled up once but not more and mine remained dry. Perhaps it was the mental preparation I had put myself through to have the gumption to come into the meeting at all, but whatever the case, I felt numb, emotionally dead to the world. On the way out we passed the other fellows now chatting with each other. I wanted to catch their eyes, and to truly thank them for the work they did, in spite of what in our case was a total failure of the particular treatment protocol for Suzi, but they didn’t look my way, out of chance or self preservation I’m not sure, but whatever the case Suzi and I walked out of the clinic without so much as a goodbye, and no words, or solace, or a visit by Dr. Goff.

It was still early in the afternoon so we decided to head over to the family lodge, collect a few things we had left there on the previous trip and spend the afternoon in the sun outside. It was better at least than heading back to our cramped and dingy hotel room to bear the immense weight of this news indoors. We found a bench in the sun, some comfort and the usual gentle solace of the grass and trees around us. As afternoon wore on to evening we eventually made our way to the shuttle stop and caught the shuttle back to the hotel. That evening Suzi in her usually inspirational way had already moved past the day’s news. Rather than dwell on the frightening future ahead of her she poured over online menus from local restaurants and fantasized that we might go to a French café she had found in the morning to have a nice breakfast of what else – French toast. Her ability to direct her focus not to the death sentence she had been delivered only hours ago but instead to the positive and joyful things she could control, in this case the simple idea of a café breakfast made my spirit both float and plummet towards the onrushing earth at the same time.

We never did get to have that café breakfast. The shuttle schedule was such that we had to leave for the NIH and onwards to the airport by 9 in the morning even though our flight was not until 1 PM. While we had optimized the shortest possible flight with no connections from DC to Albuquerque, a four hour flight was quickly turning into an all day travel affair, and in Suzi’s condition this would be hard. We had a few minutes at the NIH before our shuttle left to the airport, so I took the opportunity to head up to 3NW to see if I could get some additional wound care supplies, and to be honest to say good bye. The nurses on duty were not any of our most familiar, but on the way out, after getting the supplies I needed, I saw that Ornela and the other Fellows were gathered in their office. I wanted to convey to them a thank you and also to somehow let them know that, despite the tragic twist of fate with Suzi’s treatment, the work they were doing was important and they would go on to help many others during their careers. I forget my exact words, but I am fairly sure I botched my message completely, and before I could finish I had to turn away with eyes that had become blurry with tears.

As we were going through security at the airport the first of several setbacks happened. Suzi was almost unable to walk but managed to stagger out of the wheelchair for the few short steps through the scanning machine. Then of course a pat down, and then something in her colostomy bag triggered the explosive sniffer and she was set to the side in her wheelchair amidst the bustle of airport security waiting for a more thorough screening. I watched in anguish over the 20 minutes of waiting that ensued as her own patient demeanor transformed into anguish and sorrow. All the while the head of the TSA slowly and lazily donned gloves and chatted with her coworkers until finally making her way around to Suzi and wheeling her into a side room to be searched. They allowed me to join and after several degrading minutes of inspecting her colostomy bag they finally allowed us on our way with Suzi’s tears still drying as I wheeled her out the door.

Again her indomitable spirit bounced back and we enjoyed a burrito for lunch and finally made our way onto the plane. We were allowed to board first and I carefully moved Suzi from the wheel chair into her seat next to mine at the front row of the airplane. A four hour flight was daunting and we were both doing everything we could to envision making it through the grueling trip. It would be uncomfortable to say the least with Suzis legs filling ever more with fluid the longer we sat. In the end we would be sitting for a full hour and a half before we were finally even airborne. In one of fate’s cruel twists changeable fall weather had set in and winds combined with downbursts meant we would line up behind at least 10 planes on 2 different taxiways, only to get to the very front of the line right when that particular take off direction was shut down because of the changing weather. Finally airborne, however, we made our way to Albuquerque over the open country. Suzi’s stoicism was obvious and I took turns holding her arms or legs to help assuage the discomfort. A couple of times during the flight I caught the eyes of a woman a few seats back, who looked at Suzi with something of familiarity or compassion or both. We landed in Albuquerque and disembarked from the plane. 10 minutes later and half way across the airport the same woman caught up to us and asked us if we had a minute. She knelt next to Suzi on the ground and looking at her with some timidity began,
“ I am very nervous, I’ve never done anything like this before, but it hurts me to see people in pain, and I could see you are in pain. Right after I noticed that I turned around and the lady who was passing me commented that my necklace was beautiful.” She produced a necklace with a stone horse as a pendant. “This is an indian fetish, and the horse is a symbol of strength, I believe it was a sign and I want you to have it. Fetishes are supposed to be passed on at the right moments …” Throughout that day my emotions had taken a u-turn from the day before. Now the smallest thing was making me tear up, and Suzi too. We both choked out thank you’s through blurry eyes. Wishing I could say more, but knowing it was all I could do to hold a sob back and say thank you. Somehow this little sign gave us the sense that we were at least at the right place. The kindness of a stranger has never meant as much to me in my life. We later heard still different interpretations of the horse as a symbol of freedom, and it was a welcome companion as a reminder of these two qualities and to help us find them in the weeks ahead.

That evening after a 2 hour shuttle and drive to Santa Fe we met our friend Steve at the Tesuque Market for dinner. I had suggested that I take Suzi home first and come back and pick up food, but Suzi wanted to push through and get dinner, mainly because she didn’t want “soggy french fries”, the sure result of me going to get food and bringing it home to her in a box. Her attention to detail never missed a beat but in this case it may have been one step too many on this long day and by the end of dinner Suzi was exhausted and at her endurance’s end. Steve was clearly a bit shocked and sad to see Suzi confined to the walker and struggling even at that. Two summers ago he had been at our wedding and met Suzi for the first time, beaming with such exuberance and vibrance. This last summer he had seen her still able to hike the mountains behind our house, and now he could see that she had lost so much. He was leaving the next day for six weeks and I could tell in his eyes and words he wondered if he would see her again.

We had decided enroute to Tesuque that we wouldn’t talk about plans until the beginning of the next week after we had given ourselves a chance to feel things out and decide if it was the right place to be or not. The original plan to come to my family’s home here was to be able to easily return to the NIH for follow up visits, and now there was no NIH return to, at least not fur us, so it was unclear if this would be the place for us to remain for the time being or not. The territory we were now in was so unknown it was hard to imagine making a “plan” anyway and this strategy gave us time to let our intuitions find their bearings for us.

Living or Dying

Suzi had decided beforehand which room we would stay in at “El Torreon” – the house so named for its tower feature- she had chosen the one that belonged to my sister Gaja and her husband Dave. We hadn’t stayed in that room before, but Suzi’s spatial intelligence had already wandered through the house in her mind’s memory and picked out that room because the bathroom would be most easily accessibly from the bed, something that would make life so much easier with Suzi’s more limited mobility.

Suzi had also begun corresponding with a practitioner who was listed on a website for the Chickly school of lymph drainage massage before we left St. Louis. Suzi had explained that we were headed to Santa Fe and she was in need of lymph massage and also of her overall condition. Lily, the practitioner made it clear she wasn’t sure she was qualified to work on someone with such advanced cancer and lymphedema, but after several back and forth emails Suzi asked her to just try. That weekend Lily showed up with her massage table and an assortment of foam props. Suzi and I instantly liked her, she was chatty in a slight east coast accent and happily told the tale of how she had finally left the stressful east coast lifestyle behind 30 years ago and moved “west”. I helped set Suzi up on the table and left Lily to do her work. After an hour and a half Lily sauntered out, explained that things had gone well, that she had primarily focused on energy work, and that Suzi was asleep. She asked if we needed anything and I explained that a wheel chair and toilet seat risers and handles were on the list of things we needed to get sorted out if we were to stay. The next day Lily showed up with all of these things and more, she explained that a neighbor had them from when his parents had been ill and was happy to let us use them. Our friendship with Lily blossomed from there and she proved pivotal in providing access to the care Suzi would need in Santa Fe.

Adjusting to the Santa Fe altitude proved as challenging as I had expected and more so because Suzi’s lungs had begun filling with fluid again. At the NIH they had told us not to worry but to keep an eye on things. Between Suzi’s bodily impediments to movement and the lower levels of oxygen however, she had pretty much stopped walking, even the short 100 yard trip to my grandma’s old house proved too much. We had scheduled an oncology appointment for Monday with Dr. Gu, the doctor we had used the previous spring, but Suzi wisely decided another doctor visit so soon after getting here was too much of a good thing. Instead, we spent the week working with Lily and experimenting with another Lymph drainage massage practitioner.

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Suzi finding some solace in the fall foliage and sun

Suzi would spend the days out on the upper deck or on the patio in front of the creek, reading in the sun. The trip to the upper deck involved a flight of about 15 steps that Suzi was still able to manage, but the each left her winded and wiped out.

Getting her into and out of any chair had become a team effort. We worked out a system where I would lean over and grab her under each of her sits bones. She would wrap her arms around me in a beautiful embrace. These hugs became the most heart touching moments of each day for me over the next month. They would slowly evolve from here to a point where her swollen arm would have to be picked up first with her own good arm, and later with others help and wrapped around me until her good arm could grasp it and so encircle me. Once in place I would count to three and lean back and up pulling her pelvis towards mine in a scissor like fashion that brought her to her feet. As time progressed this became more and more unnerving for Suzi who was certainly never known for her timidity. For a long time I didn’t understand it. I knew I would never drop her or lose my balance, always taking the time to ascertain the solidity of my stance before bringing her on to her feet with me. Even so it got to the point where she was positively frightened if I wobbled even slightly or stepped in an unanticipated direction to gain better balance. We were always mixing our lefts and rights up in mirroring each other which didn’t help anything, but ultimately I came to realize that her legs had become so emaciated and weak under their swollen façade that she was relying more and more entirely on me for balance. As time progressed she got to the point where her skinny right arm would embrace me with all of its power and she would hook her neck over my shoulder and grasp me with her chin. By that point in time several people were required for the movements as someone would need to remove one chair from underneath her and replace it with a wheel chair or vice versa, and I would encourage them to help do the work of pushing her toward me from behind. Her weakened limbs and joints of her neck and arm would often pop and alarm me so I encouraged her not to cling with her neck, less she get inadvertently hurt during one of these moves. Nonetheless even when I knew it was somewhat out of self preservation these desperate hugs with her skinny right arm were heart melting to me then and now, a final expression of the tenacity with which Suzi hung on to life, lived life, and loved those close to her. Every time I picked Suzi up in this way over the 6 weeks we were in Tesuque, I would pause and look at her beautiful face, emanating such peaceful and patient energy in the face of her body’s slow, excruciating decline.
“I love you” I would say, not out of habit but out of sheer compulsion
She would open her eyes, look up at me, with a softness that had grown there, her hollow cheeks would pull the corners of her mouth up into a beatific smile
“ …. Ahhhh … I love you.” She would say. That look, her smile, those words have since become my touchstone for expanding my own loving kindness and compassion, and work without fail to open my heart with complete vulnerability.

Suzi finally agreed to make an appointment with the oncologist on Friday. My inner concern, which she was carrying as well– that her lung might need draining soon and we would be stuck waiting over the long weekend- won out over waiting until the next week. Dr. Gu had managed to squeeze us in for a 15 minute appointment, all the office would allow her, she explained.
“I wasn’t able to open the latest scan but I did see the one from late August and it was …horrible.” The last word drawn out and accentuated with a grimace. Without having to look at each other Suzi and I shared a moment of incredulity at the sheer lack of bedside manner in her wording. Then reflecting I thought of the fact that this scan had been prior to Suzis TIL cell treatment, and at the time hadn’t garnered significant discussion except to indicate that Suzi now had a tumor that appeared in her liver, a usual progression for colon cancer but one that had held off until then for Suzi. I found myself wondering, as did Suzi, what other things that scan had shown that we hadn’t been told of at the NIH. Similarly I found myself wondering what the latest scan had shown that we hadn’t been told of. Suzi had unbearable pain in her sternum now among other things, was the cancer invading the bone or joint there and causing this discomfort? I couldn’t help but wonder. At the same time I had no interest in delving into the scan results as I, at this point, was of the understanding that there was anything that could be reasonably done to mitigate the cancer’s progression, so knowledge in this case might only induce fear and worry for which there was no purpose or use.

We then talked with Dr. Gu about the symptoms with Suzi’s breathing and lungs. We managed to get a prescription for oxygen and an appointment for a chest X-ray next door to assess fluid accumulation in her lung. With an amazing stroke of luck we might even be able to get it drained if it had accumulated, though this was an unlikely proposition on a Friday afternoon it seemed. We made an appointment to meet with Dr. Gu the next Monday to discuss “treatment options”. This time we would have a full 30 minutes she promised, and then made our way across the hall for a chest x-ray.

Not to our surprise we learned after the X-ray that fluid had accumulated in Suzi’s pleural space, to the point that it would be worth draining, but much to our surprise before we could stop and get a bite to eat we got a call from the hospital that they had made an appointment for Suzi to have her lung drained with Dr. Dammad, a highly regarded pulmonologist – right now, at 5 PM on a Friday. We went through the usual rigmarole of checking into a new hospital wading through a maze of receptionists, snacking on cashews and potato chips since our dinner plans had needed to be postponed, until finally we made it into the GI department where a room usually reserved for GI patients bad been made ready for a thoracentesis. By then it was 6 PM but, nonetheless, a crew of no less than 4 nurses was on hand to assist with a procedure that in Anchorage would have been done with one or two interventional radiology technicians. Eventually the esteemed Dr. Dammad arrived and preparations were made for Suzi’s lung to be drained. I don’t remember what question I asked him but for some reason he pulled me aside just out of Suzi’s earshot. For no particular reason he offered me more than I had asked for.
“ When patients begin accumulating fluid in their lungs they have on average 6 months to live … This is very sad unfortunate case … I can tell .. with the swelling in the arm, the legs … end stage cancer .. I am very sorry.”
“ You don’t need to tell Suzi that.” I informed him curtly, knowing full well that if there was one thing Suzi abhorred it was a “negative Nancy” of a doctor, well intentioned or not. I also knew well enough what territory we were in now, and the meaninglessness of the six-month average. I recalled that prior to Suzi’s surgery that removed her ovaries she had been accumulating fluid in her lungs , that was two years ago but I knew well enough that this was an entirely different situation, with no known pathway to address the cause of the fluid that was accumulating now.

Dr. Dammad proved efficient and gentle at his work, but even with all of the support of the 4 nurses Suzi went through considerable pain as the fluid drained and inevitably caused her to cough as the lung expanded and reclaimed its lost respiratory space. The pain in her sternum made this unbearable and brought tears to her eyes as well as to those of a couple of the compassionate nurses. At one point I heard one ask the cause.
“Her original diagnosis is colon cancer, she’s been at this for a while, poor thing.” , another nurse responded. Knowing we were in the GI ward I recognized that this compassionate nurse who had been there 20 some years understood all too well what this meant she had been through.

Suzi and I made it home and nursed our way through the weekend with a couple of small bottles of oxygen that Dr. Gu’s office had loaned us for the weekend, and on Sunday night her parents arrived for the week. On reflection it still amazed me that Suzi and I spent the first week in Santa Fe with just the two of us, from here on out we would need first one, then two, then at least three other people around to attend to Suzi.

That following Monday we had another meeting with Dr. Gu. “ I am not sure what you want to do but I have looked into treatment options” she began after asking how the weekend had gone.
I knew this was a loaded statement and one for me to leave to Suzi to respond to. Suzi had not yet gone through any treatment that didn’t hold at least some curative promise or was at least a step towards the possibility of a cure. Now the idea of further taxing treatment after all Suzi had been through and a look at her disfigured body, skin dried out from rash, and bald head seemed like it might mean more suffering than it could be worth.
“Sure, you can tell me what the options are,” Suzi said to my surprise, not usually the one to want to know “the options”, that she often chided me was my compulsion.
Dr. Gu elaborated that there was a chemotherapy in a pill form that was still experimental but was being used in cases like Suzi where cancer had shown resistance to the standard forms of chemotherapy, and there was Cetuximab, the targeted agent that Suzi’s cancer would likely respond to, but for an uncertain, but certainly finite amount of time. After a brief discussion of these options Suzi explained she would think about things, she had experienced enough to know that she couldn’t say she would not entertain these ideas, but at the same time she also wasn’t sure her body was capable of going through any more toxicity. After the short appointment Suzi had labs drawn and we went to meet with a pain and palliative care doctor.

He was welcomingly personable and it was clear he was there to help Suzi in the way she wanted with the aim of managing her comfort as best as possible. After a long discussion he altered some of her pain medication on an experimental basis switching from oxycodone to methodone for long acting pain control. He also strongly recommended a steroid to help manage the pain in Suzi’s sternum. Suzi had been instructed on first leaving the NIH not to be given steroids and was even given a medical alert bracelet to this effect. Steroids would be immunosuppressive and inhibit her T-Cells from doing their work. This was the reason the pembroluzimab had been stopped. Usually a severe rash like the one she had experienced would be treated with steroids but in this case the whole point of the pembroluzimab had been to stimulate the immune system and to have to turn around and suppress it with steroids would have defeated its purpose. After long discussion we decided to hold off on the steroid to see if the pain could be managed without it. While the experts had given up on Suzi’s T-Cells doing anything, the fact was her body was still teeming with them and they were the only potential cancer fighting game going on in her body now, gave us pause in giving up on them. To do so seemed fatalistic in a way I at least was loathe to accept, and Suzi and I still held a glimmer of hope that they might “wake up” at some point to do the work they were selected to do, and anything we could do to encourage that seemed worth it, and anything that would inhibit it seemed to be accepting defeat fully.

To continue to support Suzi’s new immune system she and I had engaged our non-western medical practitioners and medical advocate to beef up her immune system and T-Cell supporting cytokines in all of the ways we had been prohibited from doing while under the NIH’s guard. Now that we had been left out to pasture it was all fair game. A regimen of mushroom extracts, high dose melatonin, a strange and purportedly highly bioavialble form of vitamin C in the form of a zucchini skin and ascorbic acid smoothie and other concoctions I was constantly encouraging Suzi to take had been reintroduced as we tried to do all we could to give her overpopulated CD-8 T-Cells a chance to wake up, smell the coffee and eat some cancer, before it was the end of Suzi and themselves.

That Wednesday we scheduled a call with Dr. Jamison, our medical advocate and friend, who had become such an important touchstone on medical decisions and Suzi’s general well being in the past 18 months. We settled into our usual conversation with Dr. Jamison asking Suzi to catch him up on how she was doing. mentally, physically, psychologically.

“I don’t know if I’m living or dying.” Suzi finally summed things up.

Silence. A long pause.

“Well Suzi,” Dr. Jamison began, “whether you are, living or … dying, as you put it, I will be here for you to help with whatever process you are going through.”

Dr Jamison’s words were as usual strangely comforting in this difficult context, while at the same time another admission to all of us that Suzi might indeed be or sometime soon be, dying.

Walking the Path Into the Unknown

Later that week we were able to get in with an acupuncturist who worked with oncology patients and came highly recommended by Lily. Lily had even offered to cancel her own appointment with her to allow Suzi to see her, but in the end Sandy had found room and on Friday we made it into her office. Sandy had been working with oncology patients for over 30 years, and while her white hair that hung to her knees revealed something of her age, her eyes and spritely demeanor sparkled with a youthfulness all her own.
“We have the same birthday!” she happily exclaimed on meeting Suzi, “isn’t that great!” She said with a smile beaming from her eyes and lips. We had brought our own pile of pillows and one of the foam props Lily had loaned us, “the ramp” as we called it, and I pushed Suzi back to the treatment room in the wheelchair and stayed to assist in getting Suzi moved onto the massage table and comfortable before I left. By the time Suzi was lying propped up and ready for treatment we had learned, that while a practicing acupuncturist, Sandy’s main teacher had been Dr. Sham, who she called “her Papa”, as she pointed to his small picture. He was an Indian man trained as both a traditional Indian doctor and a western doctor and among the things she had learned from him had been knowledge of the practices of Ayurveda, the ancient Indian science of health, something that instantly resonated with Suzi. The only true repreive Suzi had enjoyed during this journey with cancer had been during a six week Ayurvedic treatment and retreat in India two years before. Dr. Sham had passed a way a little over a year ago, something Sandy still clearly felt. In feeling her energy, her shared passion for Ayurveda, her clear understanding of what Suzi was going through, coupled with courage and a lack of fear in her heart to step into that space and engage Suzi’s body and health where she was, some bastion of stress inside me released. Somewhere I had been holding one of the many burdens that no one had been able to take away from me, but with Sandy I felt somehow that in the way she could meet Suzi where she was and hold her in her heart through whatever was to come, I had a companion and teacher to share this burden and journey with. When I came back to pick up Suzi an hour later I helped her sit up. Both Sandy and I noticed how the fluid had collected in her upper back while she was laying down, looking uncomfortable and possibly impinging on her already cramped lungs. Sandy quickly set to work with hot stones she pulled out of a crock pot and an Ayurvedic oil to “iron her out” and while she chatted playfully with us in no time relocated the fluid that had accumulated into that space and had Suzi up and ready to head out with us.

“I’ll find a space for you next week okay? I want to see you if you are up for it, at least once a week, but you can come twice if you want okay?”

On leaving that meeting with Sandy it seemed as if the decision to remain in New Mexico or not had finally made itself. Each day was sun filled with the deep blue of the New Mexico Sky overhead. The trees along Tesuque Creek, which ran along the edge of the yard and patio were golden with fall foliage and the apple trees were laden with red and yellow fruit. When the demands of the day didn’t dictate that we head to town Suzi would spend the hours after waking and going through our morning routine in a deck chair, her feet propped up on an ottoman, shifting slowly through the sun’s daily arc around the red bricked patio, a book in her lap, alternately dozing and reading. OLYMPUS DIGITAL CAMERANow in addition to the peaceful place to spend these precious moments together we had Sandy, someone who I already knew would become our guide over the uncertain territory and time ahead of us.

Over the next month Suzi’s face became hollower, her right arm steadily grew frailer, at one point she looked at my hand grasping her arm and noted that it looked “gross”. Gross to see how skinny it had become in comparison to the hand that had held it when we both were vibrant and healthy, and now as Suzi’s health and body were steadily declining. I still carry an image in my mind of one of the last times Suzi had the energy to shower. Showering was something she had relished even during the hard times at the NIH, but now it had become so difficult she had stopped looking forward to it. After I had situated her in the shower chair and was closing the door to let her go about her shower, I looked back and noticing the difference between her emaciated right arm, that my fingers could now encircle and her swollen left arm easily as big around as my calf, caused my heart to catch in my throat. It was hard to imagine the mental and physical anguish she was enduring each day in the disfigured body, once so perfect and physically powerful, that she now inhabited, and even harder to understand how she was doing it with such grace, patience, and equanimity. I remember at one point as we were going through her morning ritual that had begun to take still more time as her mobility decreased she quipped out of nowhere, “I need a cloud to move this body around on”.

On a bright note, Suzi’s appetite continued for the most part to hold its own. Certainly she was only eating about ½ to 1/3 of what she used to, but with my diligent amateur nutritionists eye I kept every meal full of high fat high protein content, courtesy of caribou bone broths, wild game meat, and salmon that our friends from home brought. And they came in a steady stream. From the week Suzi’s parents spent onward a flow of visitors kept 2-3 people with us at all times.

Suzi amazed me in many ways during this time, her patience with her body’s increasing disability, her patience with me as I helped her in the morning with the daily rituals of her bodily upkeep, her encouragement of all others to go out and enjoy the world she no longer could. At the beginning of her last week on the earth the sun was beginning to set and Suzi had already retired to the bedroom for the night. “Go take a walk, mom.” She told her mother, “And tell me how it is out there.”

While cancer had stripped away Suzi’s body and its functions piece by piece it had also laid bare the beauty of her inner self, a patient, kind, compassionate soul, at peace and accepting of this life that had turned horridly difficult. Never complaining of the unfairness of her own situation, she instead found what enjoyment she could in the life she did have. She would smile at a plate of French toast, that came her way, and enjoy the bites she could eat with obvious pleasure. She would admire the flocks of robins that came in the evening to bathe in the creek. She would soak up the silence and her part in it with peacefulness, and she would spend the day drifting from reading to sleep and back again without any seeming attachment to either.

This more tranquil existence was of course punctuated with the less  peaceful medical world and the interventions that were often required to help manage Suzi’s comfort as existence in her body became more difficult.  So, on the next Monday morning we found ourselves at Dr Gu’s office to have the weekly labs drawn and later that day we received a follow up call from Dr Gu’s office.  An animated nurse let us know that the labs had come in and Suzis hemoglobin was critically low and Dr. Gu recommended a blood transfusion to mitigate this. This involved two more trips to town that week one for the “type and cross” to find and test satisfactory blood for Suzi and another for the transfusion itself. My older sister Daiva was in town that week and the day of the transfusion she accompanied us, and sat by Suzi’s side for the 4 hours it took while I came and went from running errands and attending to my day job in the reception area. The transfusion of blood certainly helped Suzi’s cheeks to become more rosy and while it didn’t transform her into her old self over the weekend we noticed a definite improvement in her condition.

On the heels of Daiva’s visit Suzi’s close friend Margo arrived, she had planned to come later in December but I had suggested she come sooner if it all possible, and she was able to make it work. Margo, with an effervescent and eternal smile that beamed through her eyes, was by Suzi through each day providing companionship. She also helped with her inner knowledge of the body to help alleviate some of Suzi’s suffering with props and exercises. Her visit overlapped slightly with that of Shelley, the three of them, Margo, Shelley, and Suzi had come together over their passion for Sanskrit chanting, which they had formally practiced together over the last year.

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Margo and Suzi on the patio in Tesuque

The plan had originally been for Shelley and Margo to arrive at the same time, but an unexpected layoff, the quick progression of Suzi’s condition and other factors meant they only had a day of overlap. It was solace to my own soul to see these close friends of Suzi present at this stage of her journey. To come out from my office work onto the patio and see Margo or Shelley next to her side, massaging her arm or leg, or just sitting their quietly listening to the creek while Suzi read or slept with her head laid back and lips parted was a welcome comfort at this difficult time.

 

That week one of Suzi’s students also arrived with his mother to visit with Suzi. Our last visit with him and Shelley was at the hospital just before an appointment for a thoracentesis. Suzi looked at Rowan and asked how he was. Rowan fidgeted slightly and answered shyly. Somehow it wasn’t a divide that seemed meant to be bridged. As much love as Suzi had for Rowan and each of her students, their lives were on the brink of unfolding into adolescence, on the edge of the experiences of the most sublime joys of life, and Suzi, at a time of life meant to be its prime was instead making peace with the unknown abyss-like void of dying. For someone so young to travel to that place seemed both impossible, and maybe as the Waldorf system might indicate developmentally inappropriate. To be fair Suzi was certainly dealing with a developmentally inappropriate journey in life, and sadly nothing we had done to try to change that story had borne fruit.

Each thoracentesis drained a liter or more of fluid from Suzi’s lungs and she left with more comfort in respiration than she had arrived with each time, and this third one was no different. Trips to town and movement in and out of the car were, however, becoming more and more difficult and it had become a balance of the benefit of the treatment versus the energetic cost of getting Suzi there.

That same day we went to see Sandy again, and getting Suzi out of the car for the third time that day was a struggle. I came back to the treatment room to sit through the end of the treatment with Suzi and help her back into the wheelchair. As Sandy was “ironing” out Suzi’s back with the hot rock and oil she looked at me.
“She’s too weak to come in to see me anymore.” She said with her brow furrowed, “From now on I will come out to see you.” She finished with enthusiasm and conviction. With that she made a plan to come see us the following Wednesday

So on Wednesday, Sandy came to see us at the house. She showed up after walking her dogs in the mountains, and met Suzi where she was on the patio in the sunshine. I sat off to the side while Suzi and Sandy talked, more a witness than a participant in the conversation.
“You’re too weak for needles, so I am just going to use some essential oils on your points today, okay?” Sandy half asked, half explained.

Their conversation went on, and somehow it turned to the possibility of her death. Sandy rather than suggest Suzi was dying more asked it, and followed up with affirmations,
“mmm hmm, that’s right” she would say.

“How do I do this?” Suzi finally asked “How do I die?”
“Well … mostly your body decides, and it will let you know when it is time.”
“I am trying to decide if I should get another thoracentesis or transfusion”, Suzi said, “Will these just drag things out?”
“Getting your lungs drained, will just make you more comfortable, you should do that if you need to.” Sandy advised her.
“As for a transfusion, yes that will make you live longer, and you need to decide if you want to extend life by getting transfusions, no one else can decide for you, but yes those will make you live longer.”

Suzi accepted Sandy’s guidance with her usual composure and at the same time from the side I realized I had witnessed Suzi’s first conversation in which I saw she was looking around a corner, sizing up the territory, deciding if it was time to move from learning how and trying her best to live to learning how to die.

After Sandy had treated Suzi I met up with her inside. “It think it really is time to get hospice involved.” She told me. “We used Ambercare when Dr. Sham passed a year ago and they were very helpful. If you don’t have anyone lined up I can reach out to them and get them in touch with you.”
Sandy’s compassionate eyes made it clear to me that there was no time to waste in lining up this help at this point in our journey. Hospice had been a step Suzi and I had been reluctant to take, there seemed a finality in it, something akin to turning onto a road headed downhill into a dense forest and shadowy darkness, a road we both knew we would likely never come back up. Instead we had enlisted a help of a home care service, but clearly Suzi needed the more focused care that only a Hospice service could deliver now.

Later that day our friends Eric and Christine with their two year old son Thorstein arrived at about the same time as our kind and heartfelt friend, Ole. Eric, Christine, and Ole had all been part of our wedding ceremony, Eric and Christine, speaking to creating a healthy family environment, and Ole speaking to living out of love, each of them embodying to us these qualities more than anyone we knew. The three of them showing up at this difficult time was more than a blessing and something we needed more than we knew. Ole was only with us for a few days, but during that time he gave us little tips from his extensive experience as a Physicians Assistant to help us keep Suzi comfortable. Things like making sure the sheets and blankets weren’t stretched taught over her toes to avoid stressing her toenails over time, and keeping our eyes out for bedsores. Ole also brought his own oxygen sensor with him and helped us to ensure that Suzi’s oxygen levels were adequate when her breathing became more labored and disconcerting.

That evening Suzi had more trouble than usual and it took me and Eric and Christine helping her to finally get her into bed comfortably. Along the way I felt scolded several times for touching her in the wrong ways, ways that hurt her, and in front of the newly arrived friends I felt a bit belittled, after all we had been through together, they seemed able to assist her without reprimand, while everything I did seemed inadequate. Finally, my ego bruised, I had to step aside and let Christine and Eric finish. Suzi let me know that it bothered her when I sulked, but I didn’t know how else to deal with the emotions I was facing. That evening I left to run some errands, and eventually called Sandy. I apologized for calling her at home, but explained the tension I had been through with Suzi that evening, for some reason I thought she might understand this and be able to explain it to me, and indeed she proved as insightful in this as my intuition suspected she might be.

“Monty, you have to understand, right now for Suzi it is like there is nothing holding her, her body is falling apart in every way, she is uncomfortable, facing a new profound unknown and there is northing that can hold her. She lashes out at you because that’s what people do – they vent on those they love the most because they know they can and that those people will still be there even if they unleash some of the anguish on them. It is because she is closest to you that she is comfortable releasing her emotions on you in this way. It is not because your friends are handling her more gently, but because she is not comfortable acting this way towards those she is not the very closest with. This is very common as people near the end.”
I thanked Sandy after the conversation, realizing my intuition that she could help us both navigate the difficult and uncharted territory ahead had been accurate, and also struck again with the clarity that we were swiftly approaching the chasm of dying.

Two days later we prepared to head in to town for a blood transfusion. Suzi had decided to go through with one more transfusion with the intention to use the strength and clarity of mind it would give her to make a conscious decision whether or not to do any more transfusions, both of us knowing deep down that her intention was to gather the courage and presence of mind to choose not to. It was amazing how Suzi’s strength and mobility had been sapped in the recent weeks, her legs no longer responded to her intentions as they should and it took the combined strength and coordination of Eric, Ole, and myself to get her into the car comfortably. We were able to help her out of the car in similar fashion at the infusion center. The center was crowded as usual, a long, narrow, single room with 5-6 reclining chairs set up with IVs nearby. The four of us entered and after taking Suzi to the restroom unloaded her into the recliner. The man next to us looked at me after I had carefully lowered Suzi into the recliner.

“Is she your sister?” he asked.
“She’s my wife.” I replied.
His eyes softened with kindness. “ You are a good husband.” he offered.

While I appreciated the emotional support from this stranger, it was odd to hear those words, I wondered what else a husband would do in a time like this. For me throughout the experience with Suzi’s health, prioritization had become ever more easy for me. To see the one you love in pain, or stress, or worry made it easy to make the decision to prioritize what I could do for her above all else. At the same time I would sometimes find myself experiencing jealousy for those friends and acquaintances who had the freedom to and chose uncompromisingly to pursue their passions rather than act out of compassion. Suzi could of course see when this rose up in me and was always encouraging me to go out and satisfy my own passions. All summer long when the weather was nice she would encourage me to head up the mountain with my paraglider for a flight, or in New Mexico to go for a hike, or even to head out for a beer at the bar with a friend. But Suzi never seemed to wallow in any sort of jealousy. She was always genuinely happy for everyone else’s joys, whether for the adventurous trips they were taking, some success, or the child who had come into their life. Even in this latter case where I could see the sadness well up in her eyes that it wasn’t her story to be becoming pregnant and having her own child, something she had wanted in life more than anything, she could still see past herself to embrace a friend’s newborn and share in that joy for them. And she did so from the bottom of her heart, with a joy and enthusiasm few could summon even in the healthiest of times.

Relatively quickly the four-hour infusion was underway. I stepped out to do a few work calls and left Eric by Suzi’s side in the transfusion room. Somewhere during that time I had a voicemail from Suzi’s dad and called him back. He let me know that both Linda and her sister Katie were planning to come in the next two days, news to me. I replied I would reach out to both of them, I had taken the role of managing Suzi’s visitors, and I had been adamant to keep the visitors to small intimate groups, large enough to provide the needed support, but small enough that the people didn’t end up overly engaging amongst themselves when Suzi was weak or sleeping and in so doing forget to give her the attention they had come here intending to share. After a few conversations I agreed to pick up Linda that evening, and to delay Katie’s arrival until Sunday when Christine and Eric would be headed home.

I went back in to check on Suzi, and my intuition that she might be needing me was spot on, it was indeed time for a bathroom break. With the help of one of the nurses who we had developed a rapport with over our two visits there we pulled a curtain around us and with the help of Eric and the nurse, managed to insert a bed pan underneath Suzi and save her the difficult trip to the bathroom. It was an event filled with humor and laughs. A testament to Suzi’s ability to step not just outside of but beyond her own suffering and infirmity to engage others and bring them into the challenge that life had become, and to do it not with a sense of self pity or embarrassment, but instead bringing each of us in to share in a sense of belonging and ownership to the task at hand. It made me realize why she had been such a naturally gifted teacher. Her innate ability to meet everyone right where they were, and to allow each of us to meet her where she was, dissolved barriers and defenses bringing us together in unity through our love and caring for each other, and in this case most of all for Suzi. Her ability to accept this love from everyone from strangers to her most intimate of soulmates made it possible for all of us to participate in the challenges and rejoice in the small success, which we did when we had removed the bed pan and handed it off to a nurse for disposal.

Shortly after that the manager of Ambercare and their head Doctor arrived to meet Suzi and I at the transfusion center. I had arranged for them to come to us so that we wouldn’t have to visit their office and put Suzi through another trying movement out of and back into the car. I guessed Dr. Trohn was in her 50’s and had kind eyes set in a face that spoke of concern. Anne, who ran the organization, looked at me with sad sympathy from a face framed with neatly trimmed curly grey hair, the consummate senior professional but with an air of compassion that must have to go hand in hand with this work. It turned out that Anne’s niece was married to one of our good friend’s ski partners, and I knew her and her husband through him. It was strangely encouraging to feel serendipity and the smallness of the world revealing themselves even in the midst of this unbearably difficulty time. At some point we began talking about what it would mean to engage the hospice team and what it would bring us. To me it was important to know and to be able to convey to Suzi that this wasn’t a one way dark forest road as I had feared and if Suzi did decide to do any other treatment she would be able to. They assured me that this was possible, and if a good treatment option presented itself, or course they would encourage us to pursue it. At the same time we would have to come off of hospice to do so, as by definition to be in hospice care we would no longer be treating the disease but accepting that Suzi was moving towards end of life and with hospice care we would be trying to make that as comfortable as possible. At some point in the conversation Dr Trohn’s eyes moistened with tears and I wondered, as I had with many in the oncology field as well, what kind of inner constitution enables one to do this work continually, day in day out. To come home each evening to a family or a lone household carrying not the stress of a financial problem, or undone paperwork, but with the eyes of those treading the uncertain path towards death, echoing in your mind.

It turned out it was uncertain if our insurance would cover this care, but Anne had already received approval form her board that if not they would cover it entirely, there would be no cost to us, no matter what. I had been uncertain about choosing Ambercare as they were a for profit hospice organization while the other hospice organization in town had been a Presbyterian based non-profit. My fears were eliminated however, with this absolute generosity and realization that for profit or not, Ambercare would clearly be rising above the call of profit to help us through this most difficult of times.

Eventually the three of us went in to meet Suzi. She was exhausted but mustered her reserves to give each of them a look in the eye and to confirm that she wanted to start on hospice.

On the Tuesday before Thanksgiving, Lily came by. She had called but hadn’t gotten through to us. She was leaving for the Thanksgiving weekend to mountain bike in Moab and had felt compelled to come see us. When I opened the door she was there with flowers and instantly her eyes welled up with tears. “I’m so glad you are here, I didn’t see the car and thought you might not be …”
“She’s over here,” I smiled back through watery eyes and saw her in and over to Suzi who sat on the edge of the living room facing the darkening evening windows, a fire blazing behind her in the fireplace.
“I had to come see you before I left.” Lily began, “I wanted to let you know that you taught me to have courage. When you came here I didn’t think I would be able to work with you, that what you needed was beyond my ability, but you asked me to try, and trusted me… I have signed up for a Lymph drainage workshop in Boulder, in December, because now I know that I can have the courage to do this, because of you.”
Suzi the whole time looked down out of her wheelchair at Lily, kneeling beside her, with a look on her face similar to how she looked at me when I told her I loved her, and a beatific smile drawn over her gaunt features, across her waxy skin, she didn’t use words or need them. It said it all, more than words could. Gratitude, compassion, love, appreciation, and something else that all at once honored Lily for her own courage and humbly accepted the thanks for enabling that with her own.

On thanksgiving Day Suzi was in particularly rough shape, she had grown nauseous over the last few days and that day threw up at least twice. Earlier than usual , about 4 PM she was ready to go to our room for the night. When we got her into bed she sounded a bit disoriented she asked when the sun would rise. As it hadn’t set yet I explained it would set in a couple of hours and then rise again 12 hours after that. “but when will it rise?” she asked again. More straightforwardly I answered in about 14 hours. Somehow inside me I couldn’t help but wonder if Suzi was gauging whether or not she would see the sun rise. Feeling the dark in the room like I hadn’t before, I immediately set to pulling off the board that had covered the cracked side of the French door, and then I sized up the bathroom door and how to remove it from its hinges. Even when opened on its hinges it blocked the only window that had a chance of shedding morning light on Suzi and I was determined that Suzi had every chance I could offer of seeing the sunrise.

Suzi was still with us when the sun rose that morning, though even my 5 AM efforts to allow the light in by removing the bathroom door from its hinges didn’t allow the light to fall on her. Furthermore her eyes now remained closed, or nearly so, there was actually a narrow open slit in each one that had grown crusted along the edges of her eyelids. Even in sleep you could see her pupils through the slit. She appeared to have taken a turn into a new place.

That night had been one of the worst of the entire journey, she had woken up at least half a dozen times needing to be immediately helped up so she could vomit a blackish liquid the color of coffee but saturated with mucus. She had continued to sip water well all night but rarely kept it down for more than 20 minutes. Each time she got sick she had to be hurriedly and somewhat roughly raised so she didn’t throw up on her back and inhale some of the vomit, something that had happened the first time she had thrown up that evening. While she managed to cough it up this alerted me to the danger of her inhaling vomit, something to avoid at all costs I knew. One of the times as I was rushing to pull her up I saw her throw up with a closed mouth,
“don’t inhale!’ I exclaimed as I pulled her up, shoving a bowl under her chin. She calmly opened her mouth opened it and spit out a mouthful of the dark liquid.
“I didn’t” she replied, cool as ever.

After a night of this Suzi was exhausted and when she lay down in the wee hours of the morning she didn’t rise or move again. The nurse arrived with a 4th resort to nausea management, as we had attempted three other pharmaceuticals over that last 24 hours to no avail. This one, in the form of a suppository, seemed to work, or else the wave of nausea had run its course. Suzi didn’t open her half closed eyes again that day, and only once over the next several days.

The next day, Friday, Sandy came by to visit. We sat and talked quietly together in the bedroom where Suzi lay motionless, her breath rising and falling slowly. “Suzi has one foot in this world and one in the other” Sandy commented. “ She is floating around the room“ … “mmm hmmm” she finished more to Suzi than to me. “When Dr. Sham passed he continued on with the breath of fire for over a day, It is when the breath becomes like a bellows, you know what a bellows is?, like for a fire…”, I nodded, “Suzi is not quite there yet but she is close.”

Sandy offered to chant the Maha Mritunjaya mantra which she had encouraged Suzi to chant and repeat in her head as often as she liked over the past few weeks. She described it as the mother of all Sanskrit chants and as she put it “the one to go out on.” As she began I decided to step out and let the two of them have some time to themselves. Sandy came out 5 minutes later.
“I was trying to get you to come back in as you walked out” she said smiling, “ as I began chanting she was mouthing the words.”

For Suzi who had been unresponsive for the whole day at this point I was amazed. After Sandy left I texted Margo and Shelly. I asked if they would be able to call and chant the Maha Mritunjaya chant for Suzi. Two minutes later the phone rang and I was welcomed to both of their voices on the line. Shelly was in Hope at her family’s cabin and Margo in Anchorage and they were onboard and ready to chant for Suzi. Shelly asked if Margo knew the mantra and though she did not encouraged her to follow along. Suzi’s dad, Michael was sitting by Suzi’s side when I brought the phone in and put it on speaker, Margo and Shelly chatted briefly to Suzi and then launched into 45 minutes of chanting. Somehow the simple act of Suzi mouthing the mantra had been enough to convince me that it was something she could hold onto and follow with her heart, as Sandy had put it, even in her exhausted state, through this difficult but opportune time for her spirit. Over the next days the mantra was repeated several times a day often with a recommended 108 auspicious repetitions.

The next day Shelly again chanted over the phone while I readied a vial of water from the source of the Ganges river that Shelly’s father in law John had gathered there a month before and sent to us. The letter that had accompanied it read :
“ In the Himalayas I trekked in from the village of Gangtori to the Gomukh Glacier from which the Ganga emerges as a rushing stream. The blast of cold wind coming off the glacier froze water in the creeks I crossed and chilled me in spite of the layers of down and nylon. But orange black and white butterflies were flying. From this place I am sending some of this water to you. I learned that this river is a manifestation of the nurturing of the Divine Mother. The four qualities of this nurturance are 1) Dharma, the understanding of where we fit in creation 2) Jnana, the illuminating quality which shows us how to avoid a narrow restricted view of who we are 3) Vairagya, the ability to embrace our highest Self and let go of our ignorance 4) Aishwarya, recognizing our capacity to manifest our inherent divinity.”
He went on to explain that the water was meant to anoint ourselves with and to “Perhaps recite the Maha Mrityunjaya mantra…” while doing so. It was a welcome stroke of serendipity to hear the echo of Sandy’s advice about the Maha Mritunjaya chant in John’s letter.

Shelly began chanting and Linda and Michael took the first opportunity to anoint themselves and Suzi with some of the water, both of them following the motions of their familiar Christian tradition. I felt the need to bring the connection back to the yogic tradition Suzi most identified so at the end of the chant I used the last of the water with both Suzi and my hands. As she was unable to move her hand I held it up, “this is just like when you anointed yourself with water each morning at Vadjagrama in India” I reminded her, referencing the Ayurvedic center she had found such peace and health at nearly two years ago. It was a somewhat sloppy anointing as I attempted to move her own cupped hand to her forehead and to spread the water there. I can only trust that the gesture was a positive reminder for Suzi of the strong connection she had felt while practicing the ancient Ayurvedic tradition in India and that this chant was helping carry her spirit through this profound and impossibly difficult experience.

At some point Sandy came by again that day and sat quietly with Suzi. I also asked her to spend a few minutes talking with Suzi’s mom to give Linda a better sense of how Sandy, whose spirit resonated so clearly with Suzi’s, viewed this time of death and her perception of where Suzi was. As usual Sandy’s presence carried a warmth, peace, and comfort with her that lingered for a while after she left, and at the same time left me looking forward to her return, as I hadn’t found how to create and hold that place in myself yet as we went through the ever more challenging days.

That night I laid down next to Suzi, I had decided to encourage Kim and Erin to feel free to sit in the room with us. Erin had arrived that day as well as Suzi’s friends Kim and John and their daughter Honora from Colorado. I would sleep by Suzi’s side, but knew that it wouldn’t bother me to have another presence in the room. The reality was that I was hardly sleeping at night with one ear open to Suzi at all times, having to get up to adjust her or check her ostomy bag which had been filling up with liters of a blackish fluid each day, checking to be sure she didn’t need her sheets changed or just making sure she looked as comfortable as possible. Somehow I had learned to subsist on a regimen of only an hour or two of sleep a night, and was amazingly, managing at least a week into this pattern. I thought with another person there I might feel free enough to let my guard down and even sleep a bit better. As I was laying down next to Suzi’s side and reaching across the narrow gap between her hospital bed and mine to grab her hand and intertwine her fingers with mine I spoke,
“Hey Suzi, I am laying down by your side now, and I will be here all night. No matter what you won’t be alone, and if anything happens I will be right here to help or just to be with you.” I then looked at Kim “I am going to be here all night…” I began, intending to let her know that she or anyone else who wanted to come and sit was welcome and encouraged to do so and wouldn’t bother my sleep.
“I heard you.” Suzi said out of nowhere.
My eyes must have nearly popped out of their sockets as I looked at Kim and we both smiled, chuckled, and wiped a tear or two out of our eyes. It was the first time Suzi had spoken at least in my presence in days, and it came out clear, firm, and as infused with her honest and deliberate spirit as ever.

Even so I was really unsure how the evening would go and to be honest if Suzi would still be with us in the morning. So it was with the deepest of gratitude that I watched as the morning light shed on the opposite wall of the room we were in, so thankful to be by the side of my gentle warrior princess as another dawn broke. That night I had slept in strange spurts always waking to immediately check her shallow breathing, her oxygen cannula in her nostrils, the fluid that had accumulated in her bag, her pads to see if she needed them changed. Even though I couldn’t have slept more than a couple of hours cumulatively I awoke feeling untired.

That day we took Suzi outside, magic carpet style, in her bed. I thought the idea of wheeling Suzi outside a bit outlandish, but with the help of a ramp my sister Daiva had sent us to ease wheelchair access into and out of the house I knew it would be possible to wheel her straight out the French doors of the bedroom and into the sun, but I was not sure if everyone else would be to keen on the idea. When I mentioned it to Erin however, I shouldn’t have been surprised to see her eyes light up, “I had been thinking the same thing!” she said. I guess it was natural for Erin and I who found such solace in the out of doors to feel our heart’s pain eased some to think of Suzi not in the dark confines of the room but under the cloud strewn, windy New Mexico sky. It was hard to know what it was like, inside, for Suzi though.

The last day she had been in her wheelchair, Wednesday, it was also a sunny but cool day and I had positioned her outside on the patio about noon. As the afternoon had worn on it got cooler but was still beautifully sunny and in my heart I so wanted Suzi to enjoy the beautiful outdoor light. After a pee break at about 4 PM there were murmurings from Linda and her sister Katie that it might be time for Suzi to head in as it was getting chilly. Feeling they didn’t understand her like me and how much she loved the outside I hastened inside and returned with down pants and a jacket.
“We can put these on you.” I offered with enthusiasm “ so you can stay toasty warm out here until the sun sets.”
Suzi looked over at me as I sat next to her, down pants in hand.
There was a tiredness and resolve in her face.
“I know this disappoints you, but I’m ready to go inside.”
So much was said with those words. Firstly that Suzi knew me so well, she could sense where I was coming from without me needing to explain, and also that these things that I was holding for her, these small comforts and solace that I was trying to maintain in the face of her declining health, were becoming less important to her than they were to me. Inside me at that moment I had felt a corner being turned, a stone lifted, a road headed downhill that Suzi, ever courageous, was more ready to accept than I.

In spite of Linda being inclined to bring Suzi in that last day she was mobile, she was equally enthusiastic to wheel her out of doors in her bed, and in fact the decision met unanimous support from everyone there, and in short order we had Suzi’s bed pushed out the door with the top wheels still resting on the threshold, such that she seemed propped at a perfectly comfortable angle, still sheltered from the wind, but with the whole of the bed and her bare shoulders neck and face in the bright sunshine. I tried to imagine what it was like for her. Her shut eyelids now letting red light though to her mind, wherever it wandered through the corridors of consciousness, unconsciousness, sleep, dream, or other states I am yet to know. I hoped it was a solace to her soul, and eased the parch of her throat and mouth, the burning of her eyes, the labor of her breath, the dull headache of dehydration even a little to know her skin tasting the sun’s caress. However it felt to Suzi, from the outside it looked relatively wonderful to see her in the bright sun, her thin waxen face turned skyward, sunglasses on, and eventually an old fabric hung to shield her face a bit from the sun’s direct light. She spent all day there. The hospice nurse came and went, and commented that she looked very comfortable, though she noted she could see her breathing was now mainly with her intercostal muscles not her diaphragm. As the sun’s arc progressed we wheeled her fully out into the yard, a bit more carefully bundled under her blankets but still soaking in all of the glory of that windy blue sky with its billow clouds scudding across from the west. I left her with her childhood friend Kim when I went inside. I almost took a picture, Kim’s smiling face propped on the pillow next to Suzi. Kim had showed me pictures of the two of their faces through the years. Suzi often wearing an outlandish and comical expression of one sort or another, like only she could, spontaneous and uninhibited. I thought of how this photo would fit into that arc of the progression of their friendship, into this unimaginable but very real twist it had taken, but then second guessed myself, somehow these moments were becoming to sacrosanct to intrude on with a camera’s lens.

When Kim came inside finally she burst into tears. I had done the same thing the night before only to be wrapped from behind in Kim’s embrace as I sobbed to my own surprise “ I am going to miss her so much!”
It was Kim’s turn now and I offered her my embrace. She and John and Honora were leaving now. They had been here a month before and Kim had teared up then after embracing Suzi before their departure. “I know” I had said then, and I said it again now, only this time I really knew our hearts were breaking and there was nothing to stave their falling apart now. And this time we both knew even more firmly than we had a month ago that Kim had hugged her dear friend and said goodbye for the last time.

Eventually we wheeled Suzi inside after the sun had wrapped around the corner of the house and settled her in for the evening. The cold that I had caught that week seemed to be on the decline, but I was still on edge inside to any sign Suzi might be catching it. I was my greatest worry as the thought of the pain she would experience if she coughed, if she was even able was enough to, would surely tear the last tattered shreds of my heart apart.

As I was settling into bed and considering if it was time to lay down for the evening, I noticed that her breathing had changed, it was more labored and to my dismay it sounded congested. As Suzi could only lay in a reclined position on her back I knew there was almost no chance that even a cough would clear her throat of whatever was bothering it so I did my best to pull her more upright and encourage her to cough, to no avail. I then went in to the kitchen where Linda, Erin, and Megan (Suzi’s friend and fellow Yogi who had arrived earlier that day)  were gathered around the table.  I explained that I thought we needed to try to sit Suzi up so she could clear her throat, and while we were at it might as well change her “chucks” (nurse lingo for the absorbent pads that we put under her). I also made it clear to everyone that we needed to go into the room with a plan, and that we needed to talk with and about Suzi like someone who was there, not like a problem to solve, because she was there. A time or few in the last days my heart had hurt to notice that she was being talked about like someone who was already absent when in reality we were experiencing the last and arguably most precious of moments with her.

We all quietly gathered in the room and Michael joined to offer some pillow moving support. The evening before we had been able to sit Suzi up with out undue difficulty so I imagined it would be the same, but amazingly her ability to hold her body had slipped so much even in the last day. This time I had Erin attend to her upper back and Suzi’s skinny right arm wrapped around her and Suzi gave her final “hug” to Erin. She told me later that her heart melted to feel the strength and will power in that one arm as it wrapped around her and gave the last hug Suzi would give in her earthly body. We did our best with Erin holding her upper body, and me her torso, and Megan pushing on her back, and Linda hurriedly changing out the chucks, but it was clear it was distressing to her. Her back had no ability to hold its own weight and slouched and bent in which ever direction it wasn’t well supported.

Suzi didn’t cough but somehow the movement did help to clear her lungs and the hoarse breathing subsided. As we laid her down though it was clear the movement had been too much and she moaned on each outbreath in what I could only imagine was inward agony. It was too much for Mike and Linda and they left, understandably. Not knowing what was causing the distress I started with the usual adjustments to her legs only to realize that we had the head of the bed too far down and her tender sternum was likely being stressed. The second I raised the head of the bed a few inches her moaning subsided much to my relief. Even with that it was clear she was still in distress. On Linda’s advice I had upped her morphine dose during the process but clearly it had not kicked in enough to have full effect yet. With Megan on her left, Erin holding her right hand and her head cradled in my hands from behind we sat with her and chanted for 45 minutes until it was finally clear she was again peaceful. Over the last day Suzi’s skinny thin arm, had begun to ache and we could see it by her futile attempts to lift the arm. When we saw her struggling one person, in this case Erin, would lift the arm up above her head like a student eager to answer a question and hold it there. It was clear this helped when we would try to let her arm down and her agitation would increase, eventually though it would pass and her arm could be put by her side again. I left Megan in the room with Suzi and took a brief break.

When I came back in 45 mintues later Megan was chanting softly and sweetly in Suzi’s ear. “She likes the chanting.” She said. “When I stop she flops her arm over at me and lays still again when I start.”

We dimmed the lights for the evening and Mike stepped in to sit in the wheel chair while I attempted to get some sleep. For some reason, however, I couldn’t relax with him in the room and asked him to leave, which he graciously did. Linda had reminded me to stay up on the morphine with the pain she had seen her baby girl in still so vivid in all of our memories. The dosage we had escalated to over the course of the evening seemed to be doing its job, and I decided I would wake every hour to hour and half to give her more, up until then a dose every 2 hours had been enough but she seemed to be more uncomfortable this evening. After an hour of honest sleep I awoke to tend to Suzi and gave her more morphine. Then I fell asleep again and this time my exhaustion having finally caught up with me I slept for an hour and half. When I awoke this time though, Suzi’s breathing was again labored and wheezing. After working with her to the best of my ability I went and woke up Erin and together we raised her as much as possible while supporting her from the sides and holding her right arm up when she needed it, but to our dismay the labored breathing and occasional moaning continued. At some point Mike came in and again sat in the wheel chair across the room. Periodically we would offer Suzi ice chips, something she had only occasionally accepted over the last days but now more often than not she would chew them up and purposefully swallow them. It was so strangely encouraging to see her do so, knowing at some level that she truly was now in the process of dying yet so glad to see her accepting in these small amounts of life giving water with such certainty. The hospice workers had told me that by this point in the struggle with life the dying person is no longer with us like we think and the suffering we think we hear is not real to them, but I knew each time Suzi chewed some ice or flopped her arm wanting it to be cradled above her head that she was still with us and in her body and any small thing we could do to bring her the tiniest bit of ease at this time we would do. About an hour later at 4 AM I woke up Megan. “We need you to lead some chanting .” I said. It was the last thing we had to help with Suzi’s comfort, and I had a feeling, she might be into her final struggle and if so one last 108 Maha Mrityunjayas were in order. Megan came in and after clearing her sleepy throat her and Erin and I stumbled our way through the chant, increased the morphine frequency and even so Suzi was still in considerable discomfort an hour later, her breathing more watery and her moans more frequent. At several times as I massaged her tensed jaw muscles I asked Suzi to look for the ease. Not to struggle but to look for the gentle pathway once it presented itself and to take it. I could no longer see any reason for Suzi to continue to struggle, and as hard as it was to encourage her to find the path of ease and letting go, it was easier than witnessing her pure, strong heart be put through one more seemingly unnecessary trial of its bottomless strength, endurance and will power.

Megan switched to another simpler more soothing chant and we continued. At the same time I began preparing a medicine designed to dry up “terminal secretions” which I suspected were beginning. I pulled Michael outside to ask his opinion on this and he agreed, these were the same sounds he had heard other dying relatives make. I went back inside and began crushing up the pills in the bathroom. When I came out, Erin and Megan were distressed, and I instantly guessed why. Suzi’s breathing now sounded like she was drowning, a rattly, gurgly sound each short inhale and exhale. The hospice nurse had told me the “death rattle” was unmistakable and I now knew what she meant. Erin and Megan were looking at me with wide, worried, sorrowful eyes.
“This is normal.” I said, not having any idea what that meant right now, except that the hospice workers had told me it would happen. There was nothing normal or okay about this. My dear poor Suzi struggling through the last part of her difficult life, at a time in life when she should have been rejoicing over the birth of her first child, and even this last sad part of the journey seeming so empty of even mercy. I poured the spoon of crushed pills and drops of water into her mouth, and amazingly, the rattle resolved within minutes, and to be sure Suzi’s ease as well. I could feel a tension release in myself and in Erin and Megan to see some peace return to Suzi after the three hard hours and night that had come before. Erin suggested I give her more morphine which I did.

We then reassembled ourselves me holding Suzi’s right hand in mine, Megan at her left side holding her left hand and Erin sitting just to the right of her body . We chanted softly and then not at all as we watched Suzi’s powerful labored breathing quiet and quiet and quiet. I have no idea how long it took, but soon I found myself staring at her chest as just the upper part rose and fell. Each breath she would pull air in purposefully through her nose and out through her mouth. It was not the breath of the unconscious. It was Suzi practicing the pranayama – yogic breathing – that she knew so well. I could see her optimizing in each breath to pull in the oxygen that was coming through her cannula and expel it through her mouth. And each breath was perceptibly smaller, higher in the chest than the last. I glanced outside. That dawn, perhaps the one Suzi had asked about three evenings before was just beginning to break, lighting up the sky which was streaked with low grey clouds scuttling by from the west. I looked back at Suzi and I looked down at her hand. Her emaciated fingers now purple as I cradled them. I pulled everything I had together inside calming the sob that was welling in my chest and the tears that were brimming in my eyes.
“Suzi …” I paused “ The dawn is just beginning to break outside … You are surrounded by people … people “ I had to pause and gather something together that was slipping apart in my heart. “people… who love you from the bottom of our hearts … It is okay to let go and fly out into that sky now Suzi …” My eyes were wet, but I had managed not to start sobbing. I looked up. Suzi’s head which had been bent to the side all night was now hanging like it hadn’t before, her chest was still, and her eyes and body, so clearly, lifeless. Strange the finality and clarity in that lifelessness. As incapacitated as Suzi had been these past few days and through her increasing weakness as the last day and evening had passed, she had still been Suzi, it has still been clear and palpable that Suzi was there with us, and now suddenly and so clearly Suzi was gone from her body.

Epilogue

Over the days, weeks and months since this moment the finality of her passing and leaving her body behind continues to set in. In unexpected ways as the days have worn in it has sunk in deeper through internal realizations and external reminders, making me realize ultimately that it is a process that might not have an end. I think it will continue as long as I and all of those who have loved her are around to carry our impressions of her with us in our lives, and maybe well beyond the time that we have left our own impermanent homes behind.

When I reflect back on this time I can be filled with sorrow and even anguish in my memories of Suzi’s struggle and the extreme discomfort she endured. I remember images, that of her sitting in the plastic shower chair with her frail right arm and hugely swollen left arm, using all of her limited mobility to wash her deteriorating body. Or of her left hand puffed up like a boxing glove for days on end while we carefully attended to its elevation and the pillows it rested on to minimize her discomfort in the small ways we could. I think of Suzi’s swollen legs and the feel of grabbing her by the sits bones to pick her up while she clutched me. I think of her chest riddled with cancerous bumps and her excruciating sternum pain. Over time her sternum became a bit of a bulge that I would rub oil over and massage with warm stones wondering if the hard stone offered any solace transiting over her equally hard and bony chest. I think of her swollen left trapezius that had begun as a single grape sized node in the spring and had become a clump the size of a baseball by the time we were in New Mexico. And these are only some of the things I could see on the outside. I can only imagine what other hidden discomforts and torments Suzi kept to herself. I can only know that likely she did.

Despite all of the outward physical ailments, Suzi rarely complained. Despite the fact that Suzi’s young life, driven by her vivacity and sure to create so much good in the world, was being taken away, she rarely bemoaned her unfair situation. Surely Suzi did feel the loss that would be there when she was taken from the world, both for herself and for all the others to whom she would have given unknown and unfathomable gifts. Despite all of this Suzi never wallowed in self pity. Certainly at times the discomfort became overwhelming and she could only suffer it, but even at times of extreme hardship she held her usual composure. One extremely difficult evening came about as we had decided to switch the mattress Suzi laid on with a hospital mattress that adjusted pressure through the night. It was meant to be a reprieve for a pressure sore she was developing on her tail bone. What we hadn’t anticipated is the softness of the air mattress would make our usual technique of getting her up and out of bed for a pee break ineffective. We found this our the hard way as I was trying to stand Suzi up and her feet slipped out form under her leaving her sprawling back onto the bed, her chest unprotected from hyperextension, and her tender sternum stressed. Suzi wailed with pain for a moment and I shouted out to Shelley to get our friend Eric to help me. Things got worse before they got better as the two of us tried to work Suzi back into a manageable and pain free position, to make matters worse at some point in the process her ostomy bag sprang a leak. I was at my wits end as my attempts to alleviate Suzi’s suffering were only seeming to aggravate it. But Suzi endured all of our attempts as we manipulated her body with patience and acceptance, until at one point her head hanging down in weakness, she said, matter-of-factly, “We need a plan here.”

How she held herself together at times like this, so much better than I could have I will never know. How Suzi was able to celebrate the joys of others without a hint of jealousy in spite of the unfair path fate had handed her way I am still attempting to grasp. When I remember her in this light however, the sorrow and anguish I feel over her passing is met with and even sometimes eclipsed by a deep sense of grace, grace because of how bravely and selflessly suzi managed to navigate the journey that had chosen her.

To watch Suzi through her final months, then weeks, then days gave me the sense I was witnessing a soul being laid bare. Attachment to everything she held dear was being let go one at a time, until the only thing that remained, attachment to her very self, to her own joy, and to her own well being, was being let go as well.   Even in her failing body, she still wondered how those around her were doing themselves. She could find the strength and compassion to step outside of her self even in the most taxing times as she had when she worried about my future when she had awakened from the surgery that had ended with her ostomy and that had seemed to be, and in hind sight was, the beginning of her body’s final decline.

When I think back to the tears rolling of my face then, they embody much of the emotion surrounding Suzi’s passing. I feel this sorrow and these tears for the unfairness of all that Suzi went through. I feel these tears because I realized ever more deeply as time went on what a gift Suzi was to the world and what a loss it was to have her taken from us in the prime of her life, just when she was ready to wield her awesome power focused with the depth of her wisdom. I feel these tears because I finally understood what it felt like to be unconditionally loved, to be cared for by someone more than they cared for themselves, and to have been able to give that unconditional love in return, and I feel these tears for myself for having had that and lost it. I feel these tears for the suffering that I now profoundly understand lurks beneath the polished façade of our modern world and for all beings going through similar unfair torment and loss.

The truth is these tears are a welcome release, the tears themselves feel strangely comforting. To feel those tears is an honest reflection of the reality we expereinced, and in the absences between the emotion that stirs them to come I begin to wonder if the distance of time is already jading myself and making me callous to the journey we went through. As time goes on these lulls become longer and longer sometimes stretching beyond days into a week or more of reprieve.  But the tears like a welcome breeze return and remind me that I can still touch into that sadness while at the same time I am finding I can also touch into the joy that Suzi brought to our lives and to those around us.  I can with her image in my heart expand its own compassion to wider circles that it had ever touched before. When I am at home in the house we customized together and I notice the little things she had done in this corner or another, or find an old note neatly written on a scrap of paper by her careful and intentional hand I am thankful for the reminder and nearly always warmed in my heart to remember the true and generous spirit I was able to share my life with. In the aftermath of these bouts of sorrow I feel the deepest of respect for how Suzi weathered this journey herself, who she showed me and everyone else the face of true courage, the face of true selflessness and compassion.  She taught me the true meaning of companionship and community, she taught me that the greatest strength in life is actually to find the courage to expose one’s vulnerabilities to the world, and she showed an inner grace that few of us find in the healthiest of times, displayed when the weight of the world was becoming ever more impossibly heavy on her tired shoulders.

One of Suzi’s favorite poet philosophers, David White, said that one of the callings of life’s journey was “to become a true citizen of vulnerability, loss and of disappearance, for which we have no choice.” And certainly this is more apparent to me now than ever. The knowledge that all that we love, and that binds us to this life so deeply, will disappear has never been so transparent. As I meditated in the January Alaskan mornings, alone in the home we manifested together, with Suzi’s paper mache box of ashes on her altar in front of me flanked by crystals and images of buddhas, the hindu gods, I reminded myself that this flesh, these teeth, these fingernails, this body will one day be reduced to a similar container. I reminded myself of the unfathomably difficult journey that took Suzi from an amazingly healthy vigorous body to this container in a matter of a few short years, and am reminded that a unknowably different but also similar journey awaits each of us, and the strength, patience, courage, and non attachment we cultivate now will be essential companions on that journey, just as they were for Suzi.

Whether it will be in years and years, or a few years, or months or weeks or today, no one can say, but the surety that it will happen is indisputable. Suzi certainly found her end of life waiting much earlier than anyone would have imagined, and as the time of her passing approached, her work switched organically from work focused on the outer world, to work in the inner world. In the last month though, her energy left little reserve for either kind of work, only the work of making peace with each moment, the work of surrender to realities, that however undesirable, were no longer negotiable through any amount of will power. If there was one thing that I wish I could have given Suzi during this time or at any time during her journey with cancer it would have been even a few months free of the worry of her health to focus on that inner work. During her entire journey through cancer, the only real break she found was during our trip to india together in the spring of 2014. And she used that time well, spending 6 weeks in the Ayurvedic center, finding a peace with stillness that she had never fully explored in the vivacious and passionate life she had lived until cancer’s unwelcome arrival in it. And she used all of the time she had throughout her journey well, enjoying the life she had and always working to purify her inner self for whatever journey lay ahead.

I, and most of us, however, have that time and health right now, to attend to our inner selves, to embark on or continue the difficult journey of finding a peace with our transience, and to make the most of the gift that is this human life, whether for the benefit of ourselves through our own inner growth, or for the gifts we can share with others, or most ideally both. These things Suzi, in her short life, worked at with the dedication she put into anything she saw as worthwhile, especially as the very moments of her life became more transparently dear and finite. It is my commitment to Suzi and my homage to the difficult journey that she endured and that I witnessed by her side, to use the time I do have not only to spread good in the world, and to give to the world, some small portion of the huge gifts she had in store, but also to do this inner work, and to commit to a life of growth, however long it lasts. If there is any meaning in this life it is to leave each moment a better being that we entered it, and to leave the world, the better for our having passed through it, an example Suzi set for all of us to live by.

mid-March 2016 001 copySuzi and I in Tesuque, March 2016

Celebrating the spirit that lives on through each of us

It has been over 4 months since Suzi left her body behind bringing to an end a life she lived with passion, openness, and a spirit of giving. This life and the way in which she shared it from the bottom of her heart with her friends and family was the truest of gifts to all of us lucky enough to know her. In honor of this beautiful and dearly missed spirit there will be a celebration of her life the weekend of June 9 -11 at our cabin at Summit Pass where we were married two years ago. For those who were at our wedding we will be celebrating Suzi’s life in similar fashion, for those who were not more details will follow, but all are invited to come for the day on Saturday June 10th or to stay though the weekend from Friday through Sunday morning. For those who do want to stay overnight there is ample space for tent camping near the cabin, parking for RV’s and one nearby lodging option at Summit Lake Lodge, however the Manitoba hut is not available as it is already booked that weekend. As this event approaches I will send out more information and details, but I wanted to get the word out now as I know plans are being forged and the weekends of the beautiful but brief Alaskan summer are already filling up.

I have also spent time over the last months collecting my memories of the time from when Suzi and I left the NIH to her passing on November 28th. Several people have asked that I share this story, so I plan to post it here in the coming weeks.

Thank you to everyone for all of the support offered to Suzi and I through the difficult times we went through in the last few years, and for the continued support offered to me, her family, and to the community of all of us, a community that is vibrant and loving and that we can thank Suzi for bringing together in this lifetime. I look forward to sharing memories of Suzi at Summit Pass this summer and most of all reflecting and carrying on the beautiful spirit she embodied and shared with all of us. For those who aren’t able to join in person you will be with us in spirit.

With love,

Monty

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Final transition

Yesterday November 28 2016 just as the dawn was breaking here in Tesuque, New Mexico Suzanne Marie Worthington took her last gentle breaths in the body that had carried her through this lifetime.  I have felt the world flooded over with waves of grief in the wake of this beautiful life passing, not just in me but in the community of people in this world that she has touched so deeply and are left behind to continue on without the bright flame she carried throughout her life.  Even as everything she had held dear and dreamed of, including her own body, was being “stripped away”,  as she put it, by cancer this beautiful flame shone through to those around her.

I felt compelled to offer this post so that all of those who follow this blog but may not be directly connected to the community that has spread the news of Suzi’s passing would know that she has passed on.  There has been a well spring of support coming from this community, sharing stories and images of the life suzi led and the joyful and positive ways it has left a lasting impact on a myriad of lives.  This goodness is a gift that Suzi has left to us all.  Among the messages sent my way was the following quote, I thought it appropriate as Suzi had recounted a story of Milarepa in an earlier blog post titled “Living and Dying”, and her final abode on earth was the high desert mountains of New Mexico.

“In the high desert of mountains, I came upon a strange market,

There I traded the tumult of life, for

a timeless peace”.

From the Hundred Thousand Songs

-Milarepa

The day before Suzi left her body behind we wheeled her out into the courtyard in her bed and she spent her last day eyes closed, ears open under a blue, cloud strewn and windy sky, the perfect last day for Suzi who loved being outside above all else.  One thing felt certain after her body had exhaled its last breath, her spirit had departed decisively, I fancied into the ragged morning sky, leaving the body that could no longer contain it, bound for other manifestations.

There is of course a story worth telling of the journey from the last blog update to this one, but will have to wait for another day, when the flood of emotions that have swept over me have subsided enough so I can do justice to it and share yet another story of Suzi’s enduring courage and light.

Monty

 

Adventures on the Frontiers of Immunotherapy

 

I can only assume that the stories that follow are mostly true.  My lucidity over the last two weeks has been questionable at best and I am grateful to have the strong arms, ears, eyes, and love of Mom, Dad, Monty, Margo and Kim. I have no idea how this tale will continue to unfold as the realities already have been unbelievable.  Monty has done an amazing job of capturing the last two weeks for the academic, the lay person, the family member and the close friend.  Please embrace the emotion and take the opportunity to enjoy the words that are laid out before you.  Blessings and good Health to all.

Suzi received her TIL Cells, a bumper crop – 76 billion of them, on Friday September 9th, but before I go on from there, let me rewind and start at the moments after Suzi published my last longwinded update. It was September 2nd and we were 90% through eliminating the 10 % of uncertainty left in deciding if Suzi qualified for the trial. Things had gone fairly smoothly that day as compared to the previous day.

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76 Billion TIL cells

Suzi had been lightly sedated and had her catheter placed. Back in her room a cardiac ultrasound was performed by Chip, the slightly nervous and highly adept technician. He explained as he jellied up his ultrasound probe that he had been at this for many years, a career that included cardiac ultrasounds on everything from humans to, interestingly and slightly disturbingly, laboratory mice. Suzi had chatted with him as he manipulated the probe around her chest and abdomen.  Eventually Chip had an image of Suzi’s strong heart beating away on the ultrasound. Suzi and I stared at it in fascination. It was strong, consistent and to Chip’s expert eye looked perfectly healthy. I whispered to Suzi that even now in the midst of all of this there were more things going right with her body than going wrong. Chip reassured us he had seen nothing unusual or cause for concern and he wheeled his cumbersome machine out.

Suzi was then whisked away for her chest x-ray which went as planned and shortly afterwards we were returning to her room. Just then we ran into her nurse. “ The Cardiac team is coming back down with the portable ultrasound. They need to take another look based on what they saw.” Against my will my heart jumped a bit.

“What did they see?” I asked.

“Your doctor will be in to explain.” She replied

Unsettled, we walked back into the room and minutes later a disheveled looking Chip came pushing his machine, followed by two tidy looking cardiologists. They positioned the machine and Ornela came in. Somewhere along the way they explained they thought they had seen a clot. Suzi pointed out that if they looked at anybody’s body this thoroughly they would have found something wrong. Chip began moving the probe around Suzi’s belly while the head cardiologist with a slight spanish accent directed his motions.

“There it is”, said chip as he manipulated the probes angle to close and open a slight dark spot on the edge what we were told was her primary vein amidst what otherwise looked like static.“It’s an artifact … I’m sure its an artifact .. see the tissue is continuous…” he nervously chattered.

Occasionally the doctor would instruct him to show her different angles as she continued staring at the screen in an unnervingly flat demeanor.

“yeah but its an artifact”. Chip chattered away.

“What will happen if this is a clot?” asked Suzi

Ornela responded “you will have to be on anticoagulants for 3 to 6 months.”

“And the trial?” she asked

“I am sorry.” Said Ornela, “ You cannot do the trial when on anticoagulants.”

I reached for Suzis forehead and looked into her eyes.
“this is going to be okay.” I said “hang in there”

At the same time inside my nerves were completely rattled. Here we were at the very verge of moving forward only to have the certainty completely swept away from us. What the hell were the doing obsessing about a potential clot when the real threat that had laid into Suzi’s body was plain as day in front of everyone. Protect her from a clot so cancer could continue its slow torment. It made no sense to me. Little did I know 10 days later I would appreciate the knowledge that was being gleaned from this fine toothed combing of Suzi’s heart.

The Cardiologist continued to look on calmly while Chip kept proclaiming nervously that is was an artifact. Finally the patient and composed cardiologist looked at Chip.

“Just show me the transverse angle, Chip.” In an understated and self confident way she reminded everyone in the room that they she was in charge and would be the one making conclusions and decisions and for that matter taking responsibility for them. After what seemed an eternity she finally agreed with Chip, indeed it was not a clot.

Admittedly this was nearly the straw that broke both of our nerves after the last three stressful weeks.

Shortly after they left Ornela and a research nurse came in with the paperwork that Suzi needed to sign to officially enter the trial. After discussing and signing I went into the hall and ran into Dr. Goff.

“ Did she sign it?” she asked.

“Yes”

“Thank goodness. I couldn’t believe it when Ornela let me know they thought they had seen a clot. After all of what we had gotten through … Now we can move forward and no one can stop us.”

The next day began the chemotherapy portion of Suzi’s regimen. We were warned that the first two days would be brutal as the cyclophosphamide (aka the ominously named “Cytoxan”) would require many liters of supplemental IV fluids to ensure she peed continuously to avoid having it sit in and damage her bladder or kidneys.   Nurses would be waking us up every two hours to ensure she urinated regularly and met her output “goals”. This didn’t faze Suzi who had been waking up more like every hour to pee for the last two months, and indeed that didn’t end up being the issue. What ended up being the issue was that massive amount of IV fluids that continued to add to Suzi’s already enormous water retention burden. When Suzi checked in at the NIH her body weight was right around 131 lbs or 59 kg. By the time she had gotten through all of the surgery and treatments over the last two weeks her added water burden pushed her weight to about 148 lbs or 67 kg, at the end of day two of the cyclophosphamide treatment she was at 160 lbs, 73 Kg, almost 30 lbs of water weight that had swelled her thighs, buttocks and abdomen. As she put it she looked like an oompa loompa. Dr. Goff quipped that she wasn’t looking orange to her. On top of this Suzi’s clogged and sluggish lymphatic system meant getting the water weight off would be problematic. In spite of all of this Suzi remained cheerful through the two brutal days of Cyclophosphamide treatment. Often when waking to help her get back into her ever evolving and architecturally complex pillow pile, she would chuckle at some small comic moment in her new, slightly hoarse and shortened version of a laugh that she had picked up in her weakened state. Linda and I alternated evenings with one of us staying at the lodge to get sleep while the other slept with Suzi at the hospital to help her with the evening pee breaks and continual comfort maintenance.

Suzi still had 3 days of continued fludarabine chemotherapy followed by a pembroluzimab infusion on day T minus 2. My first evening at the lodge I was awakened by a text from Suzi beckoning me back, she would explain when I got there. On arrival I learned she had started to have a fever, something that we had been warned would recur throughout the treatment for various reasons. Happily that evening her nurse was Princess, one of our personal favorites on 3NW. Princess was drawing her blood to send off for a culture to ensure she didn’t have an infection, and explained in her unique West African accent not to worry, while she gazed at Suzi with her kind compassionate eyes.

“Did I tell you I call her Xena?” she asked me. “ She is the warriors princess – so strong.” She said as she chuckled.

Eventually I went back to the lodge that evening and left Suzi in the caring hands of Princess and her mother. That night she was up most of the evening with discomfort from the fever and pain in her liver and kidneys. The next evening on my shift, Suzi’s pain spiked like it hadn’t yet. That evening was punctuated with extra injections of hydromorphone every two hours in addition to her usual pain medication. Again she barely slept. I slept more than Suzi and even with a full nights sleep the night before I was exhausted.

We had taken to a pattern of encouraging Suzi to nap as much as possible in between nurse visits and proceudres and in the evening Linda and Suzi would head into one of the courtyards for exercises and fresh air. Afterwards Linda or I would bring over the evenings culinary treat, usually something packed with protein and fats and watch eagerly as Suzi sometimes ate a near normal sized serving. Margo, another of Suzi’s dear friends and also a touchstone along this journey arrived on the evening of Tuesday, day T minus 3. That evening Suzi finally slept well, but the next day was beset by nausea after she threw up most of her breakfast. Linda headed home on Wednesday day T minus 2 with plans to return on Saturday with Suzi’s dad Michael, the day after Suzi’s cell infusion.

Thursday, Day T-minus 1 arrived. A chest x-ray was scheduled to assess the accumulation of fluid in Suzi’s lungs. Unfortunately a fair amount had re-accumulated and the team decided to install one catheter in each pleural space that would drain into two briefcase sized plastic boxes. As with any new medical implement they arrive with the vision of being so temporary, only there for a few days at most, just in case. They would be her constant companions over the next week. Going to the bathroom became more complex, involving moving each of the briefcases to one side of her bed, attaching them to her walker or IV stand and only then moving into the bathroom and the whole process repeated in reverse. A simple pee now took 15 minutes. Dr. Goff assured us this was important to keep the treatment safe, to avoid the accumulation of IL2 in fluid pockets. I in turn convinced Dr. Goff to disconnect Suzi from them for two hours that afternoon to enjoy one last evening exercise session in the courtyard. Over the course of the day another 3 liters of fluid had drained from Suzi’s pleural space into the boxes.

Day T arrived. T minus nothing. The day we had been pushing towards for what seemed like an eternity. Time to deliver this army of cells. The plan was relax. For the first time in our stay at the NIH, nothing scheduled but a portable x-ray. The cells arriving at 1. A blessing delivered to their beautiful cancer cell murdering selves and then their gentle infusion. Of course, that plan was swiftly derailed when a miscommunication had us sent down to radiology for an x-ray instead of waiting for a portable x-ray and our morning of relaxation was stolen waiting in queue for the machine and transiting back and forth across building 10. We stole our freedom back however with a short trip outside on the return to soak in the fresh air and look at trees and clouds unfettered by a window’s reflection for the last time in days.

When we got back and settled into the room I stepped out to fill Suzi’s ice water only to return to the room to hear her and Margo chanting in unison the mantra they had devised to keep Suzi’s mind on the task at hand in the trying days ahead,

“Om ..Love .. Focus … Ignite .. Destroy .. Rebirth”

It was a bit surreal to enter the room packed with Dr. Goff and her entourage of Fellows as the looked on at Suzi and Margo chanting while the cells, hung on the IV stand were massaged by our Nurse Qun’s practiced hand as they dripped via a vinyl tube back into Suzi’s body.

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Till Cell infusion in action

Suzi drifted in and out of sleep with the sun streaming through the window onto her pale and somewhat waxen face. Margo walked her through a meditation where golden healing light entered every nook and cranny of her body. I brought my own mind home to a place of stillness, occasionally getting up to walk over and feel the bag of cells and taking the opportunity to massage them under Qun’s tutelage. At one point as I sat across from Suzi I opened my eyes just barely. The light was like that from a memory scene in a movie, thick, almost tangible and golden. Floating in its midst Suzi’s serene face as if stolen of a buddha’s statue. I fancied the light as the manifestation of the myriad prayers that had been sent to the heavens for Suzi’s well being over the past and present days.

After the successful and serene transfusion of 76 billion cells, 10 for each man, woman and child on planet earth, that afternoon began Suzi’s doses of Interleukin-2 (IL2). IL2 is a cytokine that was used as the soup in which Suzi’s T-Cells were grown outside or her body and high doses of this cytokine would be used to help reacclimatize these cells to her body and to make them more reactive once there. Dr. Goff explained that they typically gave at least 2 doses and up to 6 doses of IL2. It appeared however, that deciding the optimum dose for a patient was more of an art and act of intuition than a hard science. Any number of things could indicate that a patient had reached IL2 saturation ranging from climbing levels of creatinine in blood tests (indicating kidney overwhelm) to diarrhea to nausea, to fatigue to cognitive decline, and even hallucinations or overly vivid dreams. They would employ a host of techniques including repeatedly exercising the same mental tasks such as spelling words backwards to evaluate these difficult to gauge criteria and determine when it was time to stop IL2.

Over the next two days Suzi made it through her 3rd dose of IL2, though that evening as I slept next to her I would be awakened by her talking and on asking her to repeat what she had said I would often be perplexed by what she meant.

“had I put the fig newtons we made in the trunk of the car?” She asked me once. Seeing my look of confusion she rhetorically asked “That didn’t make any sense did it?” while she smiled at me.

In the morning Suzi’s boundaries between dream and reality firmed up and she was quite herself again, though this delved into confusion again in the afternoon. By dose 4 Dr. Goff declared we were in a grey area. Suzi’s labs were fine but it was unclear that she had full mental capacity. Dr. Goff left that decision up to Suzi who decided she wanted to continue with another dose. This fourth dose she handled well, but it was clear Dr. Goff was less inclined to push things further. The following morning at 5:30 AM Dr. Goff woke us up to discuss whether to continue the IL2. Again she explained we were in a grey area; Suzi’s labs were fine, but she was concerned about her overall mental state and relative fatigue. To my perspective Suzi’s mental state had improved, that night she had little confusion between dream and reality compared with the previous evening so my tendency was to think pushing another dose made sense, to maximize the potential efficacy of the treatment. When asked about her inclination Suzi indicated her intuition wasn’t telling her one thing or another.

“Well my intuition is telling us we are done.” Dr. Goff stated matter of factly, in a way that took total authority over the situation somehow without seeming overbearing. At the time I felt the decision a bit on the conservative side, but over the next days I would learn to appreciate the accuracy of Dr. Goff’s intuition and to be deeply thankful she had ended the IL2 treatment there. On deciding this she explained that pushing IL2 too far can have dire consequences, fatigue so severe it leads to the need for long term breathing tube placement, up to a month in the ICU, and sometimes delirium that was difficult to recover from. Princess nodded on with her eyebrows turned down at an angle from the middle of her brow to her temples, revealing the sadness of having seen patients in this condition. “It can be baaaaad…” She morosely toned.

This was the final decision to be made as to the treatment itself.   We were now on to the “recovery phase” as the doctor’s put it. It was time to just focus on regaining strength and watching as Suzi’s depleted immune system began to repopulate itself until she was no longer neutropenic. I felt a sense of being out of the woods, which should have been a relief. That afternoon however I was beset by a sense of loss, depression and anxiety. It took me a while to realize that my whole being had been so focused on getting Suzi through to the TIL Cell treatment and on helping to make all of the best possible decisions along the way to make it possible and effective. Everything from optimizing the nutrition she needed in each meal to researching and weighing in on critical medical decisions to supporting her comfort, mental and emotional state, and rest. I had been so single mindedly focused on that one goal that I had pushed any other aspects of life out of the way. Now that the last treatment decisions had been made there was an emptiness there that began to be filled with the uncertainty of the future. When would we know how effective the treatment was? How would we manage our physical and mental health in the interim? What was our plan B if we found out the results weren’t what we had hoped? When would we finally leave the hospital? I was overwhelmed with the enormity of the future that had been kept at bay with that single minded focus on that task of getting the treatment delivered. I reminded my self to take a deep breath, stay focused, and stay positive.

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Suzi getting some much needed body work from her Dad as she begins the “recovery” phase of treatment

The “recovery” phase proved far more challenging than we had expected. Rather than bouncing back once the IL2 had stopped Suzi seemed to continue a slow decline in energy and awareness. An attempt to alleviate the water weight that the IL2 had caused with a diuretic proved futile and what little urine Suzi had was increasingly tainted with blood, a darker hue of red each day. The doctors seemed under-concerned about this, but it had my full attention.

On the evening of Tuesday September 13 Suzi’s friend Kim arrived. When we made it up to Suzi’s room Linda explained that Suzi had been completely out of it that afternoon, falling asleep on the toilet and starting conversations about things that weren’t there. She had gotten nauseous and thrown up the nutritious broth I had made for her lunch. That evening though she was her usual chipper self and ate a good sized meal of mashed purple potatoes and her family’s signature “Italian Beef” – actually game meat simmered in Italian dressing. That evening Suzi ‘s intuition told her I was the most appropriate caregiver for the night and Kim and her Mom left. Suzi and I laid down in our beds, and I, with a little energy left before sleep, decided to watch some mindless sitcom. I kept hearing her breathing over the soundtrack in my headphones though and would pause to check on her. Suzi’s usual deep slow breath had been replaced by a shallow quicker breath pattern that was disconcerting and seemed slightly desperate to me. I pointed it out to her nurse

“she seems to be breathing fast in her sleep” I said.

The nurse looked over at her rising and falling chest

“That’s normal” she stated flatly with an air of authority on the subject.

Normal for most people I thought, but not for Suzi. Her overly fit body has always had a slower resting heartbeat and respiratory rate than most and this was definitely out of the norm. When the nurse checked Suzi’s vital signs her blood pressure was low, flashing and beeping yellow – 84/50. The nurse called Ornela, who was on call, to check in. And so began the evening with Suzi’s blood pressure slowly dropping and the nurse becoming less and less collected. Finally at about 3 AM Ornela came in for the third time.

“They have found bacteria in her blood culture from this morning”

“We need to start antibiotics right away”

“I’ll call Dr. Goff and let her know”

 

They began antibiotics added to the fluids they were giving Suzi to try and boost her blood pressure.

The exasperated nurse stepped in “ I am having Katie (the charge nurse) call the ICU, I want to make sure we are crossing our T’s and dotting our I’s”

5 minutes later a young doctor appeared at the door chatting with the animated nurses. He was a picture of calm and ever more so in comparison to the rattled nerves bouncing off of him. Finally he strolled into the room, introducing himself as Dr. G. He asked Suzi a few questions about who and where she was and what time it was and why she was there, then after she successfully passed his mental acuity test explained he was a doctor from the ICU. He explained to us that if Suzi’s blood pressure continued to drop they might bring her over there to watch her more closely. He explained all of this with such an unwavering sense of calm it exuded out into the room, clearly a man who had chosen the correct profession for his demeanor.

I was glad I liked him, even more so when Suzi was wheeled into the ICU at 5AM. 15 minutes later Dr. Goff walked in. She explained as she stared at Suzi through her calming eyes that this was the best place for Suzi right now. Her blood pressure had continued to drop and she needed some medicine – adrenaline- aka norepinephrine to support her blood pressure. She needed time for the antibiotics to kick in, she was now on at least three heavy hitting types of antibiotics. Dr. Goff declared she would trust the doctors here with he mother or sister. They were in charge of the ship now, but she would be checking in on Suzi several times a day. All the time she spoke I watched as Dr. Goff looked almost nervously at the blood pressure on the monitor hovering at 60/40. She was clearly concerned. “that is low” She said when I asked “ most people aren’t able to respond at those levels” I thanked Dr. Goff for coming in so early. “that’s my job” she replied with the closest expression she carried to a smile.

Dr. G then came in and began his work. He brought in an ultrasound machine to examine Suzi’s heart and kidneys. He spent a good deal of time looking at her heart, again a disconcerting moment, and then examined her kidneys. Afterwards he explained,

“Suzis heart appears to be functioning below normal right now, I would put it at 25% where a normal person’s heart is closer to 60%.” He would confirm this with the cardiac team later and comparisons to the pre treatment cardiac ultrasounds that we had deplored at the time they were taken.

“So far we have been giving her fluids to try to increase her blood pressure, but her heart is overwhelmed trying to move it around now, to continue to give fluids is like trying to fix a traffic jam by throwing cars at it. Instead we are going to modify medications to a different form of adrenaline to support her heart pumping and add protein rich fluids to better balance the protein content of her blood.” I had learned a few weeks earlier that this would help to balance the oncotic pressure and encourage fluids to flow into the blood vessels rather than to leak from the blood vessels into her tissues. He left promising to return to place an arterial blood pressure monitor to monitor blood pressure in real time. Minutes later the nurses had begun infusing albumin into Suzi’s veins.

The other main concern of the team seemed to be Suzi’s kidneys. In a reversal of the doctrine to not install a catheter tube to drain her bladder for fear of infection they had one placed both to alleviate the near impossibility of Suzi getting up to urinate and also to better monitor output. Again the fluid that came out was disturbingly red and daily infusions to clean out clots were required. Dr. G explained that in the body’s response to the infection and low blood pressure the kidneys were the first organs to take a hit. They would know they were making headway when the kidneys began functioning and producing urine again. Dr. Goff later elaborated that the stress on the kidneys from the IL2, which should have peaked and been on the decline was now intersecting with, and additive to, the rising stress on the kidneys from the infection. Her creatinine levels continued to strain my untrained but concerned mind as they elevated slowly each lab draw. By that evening it would be at 2.5 – two times the healthy upper limit.

Suzi’s delirium set in in full force that day. I took some time off after the doctors had rounded to attend to work. When I returned Linda and Kim were carefully attending to Suzi.

“She is saying some whacky stuff” said Linda, in an expression that carried both humor and levity mixed with deep sadness and worry.

Suzi could hardly talk, she was no longer strong enough to sip water through a straw. To hear her horse whispers you had to hold your ear to her lips. At one point I looked over and she was erratically moving her hand back and forth across her blanketed lap. I thought she was gesticulating that she needed something. I leaned over asking what she wanted. “Nothing” she replied “ I am just picking up all of this trash.” Her lap was empty.

Her mother later told me she had opened her eyes at one point full of sorrow. “I am so sorry for those kids” she said “ they can’t find the stone their mother gave them”

I pictured a boy and girl in a blank landscape, one that could only be conjured in a pencil drawn children’s book, looking for their sole possession, toy, and anchor to reality, a single stone.

The day before Qun had told me,

“Recovery is hard.”

“When you are neutropenic you feel like shit.” The last word comical in her chinese accent

“It is not a straight line, it is a zig zag”

“just go through one day at a time.”

“ do not get attached to feeling good and thinking she is better, and do not get attached to feeling bad, it will all change”

Words that proved full of wisdom and foresight.

That evening the tide had indeed turned again and Linda and Kim and I watched with joy as Suzi with all of her will and might shakily put tiny spoon full after tiny spoonful of broth into her mouth with her one useable arm. She had insisted on feeding herself. She was still so weak she was unable to lift her head even a smidgen off the pillow. Each tiny scoop seemed a feat of enormous proportions and success of equal measure as she carefully navigated half teaspoons of broth across the daunting inches between her bowl and lip, shakily poured them into her mouth and even more purposefully swallowed. Even in her weakened mental and physical state her steadfast will reached out and seemed to say “I will heal and it begins now” “I will retrain my shaking limbs to work, my aching belly to digest, and my body to heal” She seemed to have become her own teacher in those moments, and her own star student rising to the daunting challenge in front of her with courage, determination and optimism.

This determination has carried the day and by the following evening Suzi was sipping a milkshake she had insisted on me chasing down in Bethesda, and even eating French fries. To be sure she was not back to her old self yet. The one act of the day, moving from the bed to the recliner and back to the bed was an ordeal of excruciating pain and tremendous effort for Suzi. The fluid that had accumulated in her tissues had reached new levels and her taught skin was painful to the touch throughout her legs and torso. Earlier in the evening one of the doctors from Interventional Radiology who had initially drained suzi’s lungs showed up. From the sound of things he was going to manipulate her chest tubes as they had stopped draining, presumably to get them functioning again, but once we had Suzi sitting up he quickly set to the pulling the tubes out. I had no idea that was the plan, nor did Suzi, who pointed out no one had asked her about this. I mentioned to Suzi that on the bright side she would no longer be attached to the briefcases, however I could tell Suzi was unsure about this decision.   When he pulled out the second tube it was clear it had been clogged and fluid began seeping out. After several gauze pads were soaked it was becoming evident this was not going to be an adequate long term strategy. The quick witted nurse, however, suddenly thought of a urostomoy bag and minutes later was walking back in with a bag very similar to a colostomy bag. In no time she had placed it over the hole to collect the fluid that was seeping from Suzis lung and after an hour it was full with at least half a liter of fluid.

“What kind of show are you running around here?” Suzi later asked Dr. Goff when she stopped in on evening rounds.   This amused Dr. Goff, who explained that things were trending in the right direction. Suzi’s creatinine had leveled off and even though still quite high was beginning to come down. Suzi’s urine output was also increasing after the administration of a diuretic, and was much to our joy not red tainted any more. Also and most importantly Suzi’s white blood cell count was at .5 and when her neutrophil portion of that reached 1.0 she would no longer be considered neutropenic. The path to getting out of the ICU seemed to be slowly opening up though it was still unclear when we would be ready to leave the NIH.

We were reminded when in the ICU it was one day at a time, though sometimes it is better to think of one step at a time or even one breath at a time as they day ahead can be daunting when considered as a whole. Today on Saturday September 17th, the agenda included removal of Suzi’s Hickman catheter, removal of her urinary catheter, PT, and a head shaving.   Surprisingly the days here pass quickly, and are quie full, even on days when Suzi is supposed to be “relaxing”.

Throughout the ordeal of the last two weeks Suzi’s attitude has continued to inspire Linda, Kim, Margo, her Dad and I through all weathers. She has endured and managed the hardships and when small comforts would allow found the smiles, humor, beauty and sweet sadness that she could amazingly still access.   At points for sure even Suzi’s own unfathomable humor and composure would give way to true sadness. “I have so much to give to the world.” She declared to Linda and I through tears one evening.

“I just want to live so I can give it”

On one of Dr. Goff’s visits her mind wandered to the future

“If I find out in six weeks this didn’t work I will be destroyed.” She said through watery eyes.

Dr. Goff explained in her calm and compassionate way that in six weeks we would be looking at one of several situations and we would take it from there. Her acumen at describing an uncertain future without seeding doubt or fear was remarkable.

“You have gotten an excellent treatment.” She told Suzi

“we gave you a good number of cells, they performed well in the lab, and you had the right dose of Il2”

The next day Dr. Rosenberg would confirm this. “You have gotten a good treatment.” He reminded her.

I was fortunate to step into a lecture that Dr. Rosenberg was giving a few days later, and was equally convinced. While far from certain in its efficacy, this is truly the awe inspiring frontier and revolution in cancer treatment. Doctor’s will actually speak the word cure or in doctor-speak “long term durable response” and have realized this in many cases of metastatic melanoma. Suzi, as a candidate for using this treatment on a solid tumor cancer is truly on the vanguard of this new paradigm.

 

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Suzi and her Doctors, left to Right Dr. Steven Rosenberg, Dr. Stephanie Goff, and Dr. Ornela Dervishaj

Rebirth

Tomorrow between 12 and 2PM Eastern time, Suzi’s TIL cells will be coming home to her body.   Getting to this point has involved another trying week here at the NIH. For some days it was much easier than what we had prepared for, while at other times it was a much more difficult than we could have imagined.  All in all Suzi handled the chemo regimen in high spirits and with minimal symptoms considering the doses she was given, while at the same time management of sleep, pain and the myriad issues that popped up this week were all consuming.  Suzi had hoped to write a blog tonight to send the message to  everyone wishes to send their love and support to think of her tomorrow as she crosses this threshold in her journey.  The week, however, has had its toll on her precious energy  reserves and what little she had left tonight was used up eating a couple of small caribou fajitas and has now retreated into the healing waters of sleep.  Before that Suzi was able to be unhooked from the medical apparatus that will be her constant companions for the coming days and enjoy a short walk into the courtyard to do her exercises, with her friend, companion, and coach Margo providing gentle encouragement to move in what ways she could.

Suzi and Margo put together a Mantra for Suzi to focus on through the coming ordeal in order to send the right messages to herself, her army of T Cells and the universe in general.  The words they chose were:

Om

Love

Focus

Ignite

Destroy

Rebirth

It is a circular refrain that really has no end or beginning but speaks to the journey both ahead and behind.  Most specifically it speaks to Suzi’s vision of the journey in front of her T Cells as they enter the body from where their ancestors came 9 months ago, become oriented, and do the good work for which they were carefully chosen and are uniquely gifted to do in her body.  In that spirit Suzi had the words taped in circular fashion on the wall across from her bed to be a constant reminder to herself of what is important as she moves through the days ahead.

Suzi asks for your support in whatever way you send it tomorrow and in the days to come and if you like, please join Suzi in sending out that refrain.

Updates From Monty

 

As you read the following, you’ll understand why I haven’t had the time, willpower or energy to eloquently sum up the happenings of the past couple months.  Monty started a letter to his family that turned into his own blog post and I decided it was worth “publishing” right here.  Grab a cup, or pot, of coffee and snuggle up somewhere as you read up on the latest and greatest written by my husband, partner, beloved and best friend. 

As most of you know Suzi and I have been looking into a trial therapy at the National Institute of Health (NIH) for over a year now.  This therapy involves using Suzi’s own Tumor Infiltrating Lymphocyte (TIL) cells to combat her cancer.  Essentially these are immune cells that had infiltrated Suzi’s cancerous tumors or lymph nodes, indicating that they recognize some abnormality in the cells there.  Suzi had a cancerous node harvested this December here at the NIH.  Over the next three months TIL cells were extracted and expanded, then tested for reaction to mutations in her cancer cells.  These tests revealed at least two mutations in the cancer that a portion of her TIL cells reacted to, meaning that using the TIL cells was well worth a try.

Once the cells were ready Suzi had to decide if she wanted to go through the harrowing treatment that would involve an intensive blast of chemo to annihilate her immune system before her own cells could be effectively infused. There was a lot to consider here as the trial had not proved effective in any of the colon cancer cases they had used it on yet, though the sample size was very small, less than 10 patients. Suzi opted to wait and sometime in the spring the NIH experienced their first response with a colon cancer patient, not a complete response but very promising and it was added to a complete response with another type of gastrointestinal cancer. Then in April the NIH got into trouble for sanitation violations and had to shut down for 2 months, Suzis cells were safe but held hostage.  Finally by the beginning of July the TIL cell trial was open for business again albeit on a limited 1 patient a week basis and by early August we were making plans to head here for a final screening before Suzi’s cells were unfrozen and treatment was scheduled.

We had planned a two-day trip here, leaving on Sunday morning August 7th from Alaska and getting back late that Tuesday night.  There were a couple of scans scheduled on Monday and a screening consultation on Tuesday afternoon at which time we should know if things were a go. Over the last month the symptoms from Suzi’s cancer were steadily being exacerbated. By the end of June she was no longer comfortable hiking because of pain and lack of mobility in her right hip. She began swimming 1.5 miles 3-4 mornings a week. By the end of July she wasn’t able to swim as well as nodes around her left clavicle were causing her to lose control of her left arm. By the time we got to the NIH Suzi needed a wheel chair to get around. In spite of this Suzi adapted bravely and as joyfully as possible to her new mobility. We even went to the grocery store one afternoon during the first couple of days of our NIH visit and she gleefully whizzed around in a handicapped shopping cart gathering her list. After a day of scans everything seemed to be going well and on Tuesday I checked out of the hotel in advance of the consultation expecting us to be on a flight home in 4 hours one way or another.

Unfortunately during the consultation the doctors learned Suzi had been having blood in her stool for the last several months and they needed to determine where this was coming from. This was important because the chemo that would be used to deplete Suzi’s immune system prior to cell administration (essentially to make room for the new cells) would also annihilate her platelets and any bleeding could be life threatening.  The suspect was radiation proctitis from the recent radiation she had received to her abdomen, which would be manageable but needed confirmation.  A whirlwind of phone calls to see if the colonoscopy could be scheduled in Alaska or at the NIH led to us canceling our flight to stay for another day or few until a colonoscopy was on the books somewhere. It needed to be complete by the following Tuesday in order for her cells to be unfrozen on time and to maintain her place in the one patient per week treatment queue.  By Wednesday morning we had a colonoscopy scheduled for Thursday morning at the NIH. Thus began our week and a half stay in 3 Northwest, Building 10 at the NIH, the adult oncology wing of the NIH that houses the immunotherapy patients.

Unfortunately the results of the colonoscopy showed that the bleeding was due to a tumor that was nearly obstructing Suzi’s sigmoid colon.  Originally, back in December, the attending physician had told us this was exclusion criteria for the trial, however the current attending physician, Dr. Stephanie Goff, presented a plan.  There were two problemsIMG_4972 from the tumor, one an impending bowel obstruction that was unlikely to be caught quick enough by any sort of treatment, and the second the bleeding from the weak tissue of the tumor that would make the trial unsafe.   Dr. Goff suggested a surgery that would cut the portion of Suzis colon out where the tumor resided and then connect the two pieces back together.  This was essentially identical to her original surgery in 2013 but in this case rather than as an attempt to cure her cancer would be an attempt to manage immediate complications and allow her to go forward with the trial treatment.  If Suzi wanted to do this Dr. Goff was able to schedule it for the next day as Friday was her usual surgery day and she had nothing on the books. Suzi took all of 30 seconds to decide she wanted to go forward with the surgery.  Dr. Goff then explained that there was a small (1 %) chance that when she got into the surgery they would find that they had to do more work than anticipated. If the tumor was connected to any other parts of Suzi’s anatomy outside the colon this could include removing her uterus or ending up needing to bypass the area and create a stoma. A stoma would be a hole in her abdomen that a resected end of her colon came through and emptied into a colostomy bag. 1 % odds of those outcomes seemed acceptable risk.

This meant that Suzi had to do a second day of the clear liquid diet she had been on for the colonoscopy, oh fun.

Friday morning prior to the surgery Dr. Goff came in with her usual calm demeanor and explained that after staying up in to the evening studying Suzi’s films in preparation for the surgery her concern had grown.  She had presented the surgery case to all of the surgeons at the NIH and they were divided.  Half of the surgeons agreed with Dr. Goff’s partner on the surgery that it would be straightforward and the other half felt Dr. Goff’s concern that the tumor might be more ingrown and could complicate things were well founded – her assessment was that risk of a more complicated situation was now 25%.  Dr. Goff asked if she should consult with me mid surgery if a difficult situation arose to make sure they were proceeding as Suzi would wish.  Suzi and I looked at each other and with only a few words exchanged agreed to our faith in Dr. Goff’s decision making under pressure, we told her we trusted her and she didn’t need to consult me. Suzi’s anesthesiologists began the placement of an epidural to reduce pain and she was finally ready for the final goodbye before the surgery. As she was wheeled in Dr. Goff told me to go take it easy, the surgery would take some time cold be as long as 8 hours and would be at least 3, so I shouldn’t spend the time in the dark family waiting room but get some fresh air and be back in a few hours.

Unfortunately 1 hour later I saw a missed call from a Bethesda area code. I called back and the surgery nurse answered, Dr. Goff was looking for me. Only 1 hour into the surgery this was not likely good news. I intercepted her on her way to Suzi’s room where I thought she might be headed.

“Are you okay talking here?”she asked, in the middle of a hallway.

“Absolutely” I replied, knowing somewhere across the hospital Suzi was lying mid surgery on a bed unknowingly waiting for a decision to be made. Dr. Goff explained that on opening her up they found what she had suspected, that the tumor in her colon seemed to be intergrown with the uterus and other parts of the abdomen and was pinned behind the uterus. They couldn’t even access it without removing the uterus and on doing so would only then find what they were up against. She guessed that to do the surgery as planned would be extensive and involve more like an 8 week recovery time rather than 2 week recovery she had originally planned around. In her heart of hearts she didn’t think Suzi could wait that long for some form of treatment and was dubious if it would be worth it. The other alternative was to achieve the first goal of the surgery by cutting the colon above the tumor and forming a stoma taking care of the impending bowel obstruction. This would unfortunately leave the tumor in place and would not address the bleeding. We wouldn’t be able to move forward with the trial and we would head home when she was fit to travel. I communicated to Dr. Goff, that she knew as we did well enough where we were in this journey and what options were in front of us, and that in light of those there would be some level of acceptable risk to Suzi in moving forward with the trial, and it might be fairly high. Dr. Goff made it clear that the risk to Suzi’s immediate health in attempting to do the trial with a possibility of uncontrollable bleeding threatening her life was not something she ever wished anyone to go through. I asked if the stoma would be reversible. She said yes, and after some careful thought, said they would bring a loop up and that way would have access to both ends of bowel, so that at some point the whole system could be put back to normal.

“Okay. Lets do that.”

“I’m sorry” said Dr. Goff.

She walked off and I went outside, holding my head in my hands for what must have been 45 minutes. I felt the overwhelming darkness and weight of a new reality settling in that was oppressively suffocating all of the other possible realities I had struggled to maintain over weeks, months, years… Eventually I collected myself and got to the surgery waiting room. An hour or so later Dr. Goff came out and explained they had executed the surgery as we had discussed. Suzi would be coming to in a while.

“You have a hard job Dr. Goff” I said in parting, “I don’t know how you do it.” as my eyes welled up.

“No, Suzi and you have the hard job” she replied.

Finally after what seemed an eternity I was able to go back to see Suzi.   A wonderful southern Baptist looking African American nurse with a thick braid and long eyelashes was holding her hand and asking her to keep breathing. I grabbed her other hand and started stroking her forehead. Her eyes were shut, yet wet like she had been crying. She was laboring to breathe. Suzi has admitted to a tendency to be more emotional when waking up from general anesthesia, but it never seems misplaced as these tend to be emotionally loaded moments, one way or another. Finally some words “Uterus?” “Yes you have your uterus” I replied. I didn’t know how much if anything she knew about the results of the surgery. More silence “Worst .. case … scenario”. Stammered out. “Time to die monty?” I could feel the tears dripping off my chin, and understood even in her semi conscious state she had been made to understand that the surgery had not gone as hoped. Finally her eyes opened and she looked into mine. All the it is going to be okays in the world wanted to come from my lips, all of the your going to get betters, but I spoke what I knew to be true in this situation that had seemed to spiral out of our intention or control “I’m always going to be here” I said, “I am always going to be here with you, no matter where this goes, okay” “you will never be alone”  “I am worried … about you” she said. “did you drink any water?” In absolutely inimitable style her concern for my hydration seemed so out of place, both comic and poignant. Now the tears are falling steadily dripping off my chin onto her and streaming out of the corners of her eyes. The nurse looked at Suzi. “Can I pray for you?”

“Yes.” And then she held forth a long beautiful prayer to the lord and his son Jesus to help this family – to bless this family, to heal this family. I could never remember her exact words, but I will always feel how profoundly heartfelt and compassionate they were, while outside of my own spiritual tendencies, it was one of the most beautiful, authentic and sincere prayers I have ever known.

Finally Dr. Goff stepped around the corner with Dr. Ornela Dervashaj, our eternally cheerful and kind fellow assigned to Suzi.   “Ahhh look at all the tears” Dr Goff observed. Suzi looks at Dr. Goff and stammered out a broken “Time .. to .. die?” “No not time to die” says Dr. Goff. “We have options.”

“ Now that the stool is not passing the tumor it may stop bleeding. Lets not talk about it now. I’ll see you tomorrow after you’ve recovered. You just need to recover from the surgery now.”

I don’t know what she means. Is she selling false hopes? Last I heard this surgery had meant the end of our road here at the NIH, and the extinguishment of hope for the most promising treatment for Suzi.

After Dr. Goff left the anesthesiologists showed up and adjusted Suzi’s epidural to manage the pain, looking none too professional they used the light from an iphone to guide their hands as they pulled the catheter in her spinal column out a few millimeters to better balance the fentanyl diffusion to each side of her body. Their cheerful and comical demeanor, however, made up for their lack of polished technique. Finally we were wheeled back up to the hospital room. On the bright side, on getting back to 3NW we learned instead of being on a pureed food diet she could eat whatever she wanted since the colon had not been resected but merely opened and inserted through the abdomen. At some point Ornela popped in to check on us. She hinted that Dr. Goff had an idea up her sleeve, a “loophole” as she called it. They might be able to manage Suzi’s platelet count by infusing platelets during the treatment to manage bleeding so it might still be possible. There seemed to be some hope brewing but it was too ephemeral to latch on to. Suzi ordered some sweet potatoes, beans and rice, a meal that I ended up eating most of, but it was good to see the first solid food in 2 days go down her throat. I think we both wondered at how her new digestive tract routing would work, without verbalizing our thoughts. Suzi remained stoic until she pulled up her shirt and looked at the colostomy. She broke down crying for a while, seeing her own bowel sticking like a sea anenome’s tissue through her belly into a flaccid plastic bag

“My bowel is sticking out of my body” she sobbed, “I shouldn’t have looked.”

When Suzi cries it is with full passion and release, her chin furrowed into a frown of a thousand dimples like a child’s, enough to break through to even the most emotionally guarded of people. It certainly tore into me to see her in this anguish and to know it was not remotely misplaced.

Suzi’s parents arrived that night. On seeing her mom Suzi broke down again,

“I don’t know how to do this she sobbed.” Linda broke into tears as well,

“I don’t either, we have to learn this one together.”

Looking at her mom and dad through teary eyes “I love you two so much.” She said.

After some more intense emotions they headed off to the lodge and I settled into the recliner that would be my bed for the next week, beside Suzi.

Saturday morning Suzi’s nurse from the night before was replaced by a new one, who sauntered into the room wearing a myriad of perfectly matching braids and a tight black sweater squeezed over her body.

“I’m Chocolate!”she exclaimed.

“Actually you can call me Tiffany”

Her boisterous entrance continued unabated throughout her shift.

“First we are going to wash you up girl, clean that surgery off you.”

“Then you going to move to the recliner – you ain’t going back to that bed … uh uh!”

She said waving her finger, “That bed is dangerous! That bed will kill you and I’m gonna make you walk”

“What you already walked?”

“Well that’s fabulous, but I’m gonna make you do it again. You gonna learn to hate my black ass. You gonna say god damn here she comes again gonna make me walk .. mmm mmm.”

Shortly after I listened to the banter from the bathroom, chuckling occasionally to myself, as Tiffany and another nurse bathed Suzi with water from the sink and a constant humorous, confident dialogue peppered with mmm hmms and uh uhs.

Later that morning Dr. Goff returned during morning rounds. Her attitude towards Suzi’s eligibility for the trial had definitely shifted, though she was cautious.   She explained there was a debate going on about Suzi within the immunology department.   Again nearly divided, this time on if it was safe for her to move forward with the trial. Dr. Goff said that she thought that if the tumor in her bowel stopped bleeding, once we were home, which could be verified by a colonoscopy, then they could move forward with the therapy. This would mean, however, waiting two weeks to inspect the tumor, and only then making the decision to unfreeze the cells, which would need 17 days to expand before it was time for Suzi to come back and start chemo in preparation for their infusion a week later. Looking at Suzis condition this seemed like an eternity to me, and while the idea of moving forward with the trial was hopeful, the 5-6 weeks we would have to wait while her cancer likely steadily progressed seemed unfathomable. Under the haze of a fentanyl epidural Suzi was slow, calm and strangely lucid. Her conversation with the physicians used careful measured words in which she made it completely clear that she wanted to move forward with the trial. Dr. Goff explained that she was Suzi’s advocate in presenting a case to allow her to continue with the trial, and also Suzi’s advocate in ensuring that they only moved forward if they felt they could do so safely. She also explained that if they unfroze the cells and found after the fact that Suzi was unfit for the treatment the cells couldn’t be refrozen, they weren’t able to withstand two freeze thaw cycles, if they couldn’t use them at that time they would be lost and then the only option would be to start from scratch, something that seemed the farthest thing from a possibility right now. It was clear she was still unsure of what the right choice was. That day was spent encouraging Suzi to eat what little she could while she slowly recovered from the surgery.

Monday was the day of the “big rounds” as Ornela warned us. Dr. Steve Rosenberg, whose genius and dedication had conceived and developed this therapy, and an entourage of 40 doctors and nurses would be rounding so we should be prepared. They showed up a little after 9 and we could hear them murmuring outside the door for 20 minutes or so. Finally, Dr. Rosenberg, Dr. Goff, and Dr. Dervashaj came in. They asked how she was doing and Suzi with her epridural out, switched to oral pain meds and walking 4-5 times a day, looked a picture of health given what she had been through that weekend. Again they explained that they were considering moving forward with the trial but would need us to head home for two weeks, heal up and assess the tumor with a colonscopy. They also explained that they were still divided as a group on if it was a good idea.   Suzi looked straight into their eyes and again reaffirmed that she wanted to do the trial. They left and for another 20 minutes the whole herd of physicians murmured outside the door.

Later that day I had taken a break to do some work in one of the atriums and left Suzi in her mom’s worried but caring hands. I was walking back to Suzi’s room and saw Dr. Goff approaching from the other direction. I looked into the room as Dr. Goff approached and saw that Suzi was being worked on by one of the staff, receiving a Reiki treatment. Dr. Goff came up to me. “I’d like to talk to you and Suzi”, she looked into the room and gathered she was getting some much needed care, and said “ we don’t need to interrupt that though.   We want to move forward … we don’t need to do the colonoscopy… we think things will heal up okay, we will rely on clinical evidence and we will plan to infuse platelets as needed to manage bleeding …if Suzi wants to move forward we are going to unfreeze the cells in one hour.”

I was stunned. Things had changed so fast. “Suzi would need to be back here in two and a half weeks to begin chemo.” I looked in at Suzi and knew the answer. “I am 100% sure Suzi wants you to move forward.” “Allright, I’ll be in later to explain this all to Suzi and her parents, we will start with unfreezing her cells.”

The staff now started talking about getting Suzi out of the hospital, but she was starting to have intense pains in her stomach that would sometimes be relieved when as Suzi put it she “farted out her side”. The following morning after getting a nice sized breakfast of an egg and croissant down Suzi vomited it up. It was becoming clear that without anything moving out nothing could move in. That day the Ostomy nurse showed up to walk us through changing the colostomy bag, something we were supposed to do twice a week. This first change out seemed daunting- the first time Suzi would have to confront and deal with the new anatomical arrangement. Evelena spoke with something of a Jamaican accent but like many of the nurses here was more than likely from the likes of Liberia or Sierra Leone. She brought out a mannequin that could be reconfigured to model various ostomy locations and walked us through the ins and outs of the stoma itself, its care, and changing the bag.

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Stoma care 101

Then it was time to do Suzi’s. I fully anticipated Evelena would do most of the work, but midway through Suzi had, in her usually assertive style, taken over most of the work and was cautiously but bravely swabbing the stoma clean with a wad of gauze and preparing the bag for placement.   In short order the Colostomy bag was replaced.

In the meantime Dr. Dervashaj had added a stool softener and a laxative to Suzi’s daily medicine regimen and slowly her bowels began waking back up. By Wednesday evening things were looking good and we were released to stay in the lodge together, and by Friday we were on a plane.

Suzi and I are arrived to her Parent’s house in St Louis that evening. Suzi had recovered okay form the surgery but the symptoms from her cancer burden soon stepped in to fill the void left by the retreating pain from surgery.  Fluid continued to stagnate and build up in her right leg and left arm and to a lesser extent her left leg. It was clear that travelling back to Alaska for a week long stay would not be worth the effort of two long travel days given her condition so a short flight to St Louis made much more sense. After a few days in St. Louis I headed home for two days next week to button a few things up including reinstalling our woodstove as it was clear we wouldn’t be back in Alaska until October now. What was supposed to be a 3-day trip had turned into 7 weeks.

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Suzi and her first nephew, Owen, who arrived while we were in St. Louis

Suzi adapted to her new digestion pathway with courage and acceptance and now the name of the game was getting some weight on her bones while trying to remove the water weight she has put on through surgery and a sluggish lymph system.  Her friend and therapeutic touchstone on this journey, Mary Ann, in a humbling act of compassion and generosity, flew down to St. Louis to be her in-house lymphatic drainage, myo-facial release, and general body and spirit safe keeper and cheerleader. While Mary Ann was there she also lined up a host of therapeutic practitioners to fill her shoes when she returned to Alaska, so throughout the stay in St. Louis Suzi was supported body, mind, and soul to prepare for the journey back to the NIH. In the meantime we all did our best to get high quality high protein foods into Suzi’s body to replenish and rebuild her nutritional stores for the journey ahead. On returning from Alaska I brought a cooler full of salmon and caribou bones the latter of which were rendered into one thick and nutritious bone broth that was packaged and frozen to provide blood rebuilding nutrition for the month ahead.

Suzi and I headed back to the NIH on Tuesday the 31st of August three weeks after we were originally supposed to have headed back to Alaska. The trip began with lab work, which lead into PET and CT scans on Wednesday. After the scans I returned to her room after another of my work breaks in the atrium area. When I stepped into the room her usual cadre of doctors were huddled on one side of the room while an unfamiliar doctor spoke to her with a mild German accent. I walked over and sat next to Suzi’s bed. “You must be her husband?” he asked.

“Yes.” I replied

He then retraced his steps and launched back into what he had been explaining. He was a urological oncology fellow and was commenting on what he saw in her scans. It sounded like good news, that he thought that her right kidney was functioning well and that the stent that had been placed there starting in March was doing its job. Looking across the room at the taciturn faces of the other doctors I felt a strong wave of cognitive dissonance.

“This sounds like good news?” I half asked, half stated.

Dr. Goff explained that they wanted the Urologist to finish his impression before they all spoke with us about the scans. Oh boy. Another cliffhanger? Really? Cut to commercial break?

Dr. Goff sat down and in an unusually grave face explained that the Urologists’ attending physician would also review the scans and together they would decide if they were confident in the assessment that things were working well enough or if they would want a renal scan to assess kidney function the next day. Then she went on to say they had found something else. At this point I looked over at Suzi, and whether it was due to the after effects of the mornings Ativan used to relieve her stress about the PET scan or just general immunity to the relentless onslaught of rough news over the last weeks, she looked decidedly unconcerned.

Dr. Goff explained they had found a lot of fluid in Suzi’s lung space. They were still doing all they could to work around this so she would be able to do the trial, but she seemed to be making it clear that nothing was certain. They would plan to drain the fluid the following day through a procedure known as a thoracentesis and then may or may not install a semi-permanent catheter to drain it if it recurred. This procedure was nothing new to Suzi, she had had it done several times in 2014 prior to a surgery to remove her ovaries. It had been a pretty straightforward procedure, and again I found myself wondering why this seemed so much more concerning to Dr. Goff and the other physicians than it was to myself, and clearly to Suzi.

“I wanted to be clear with you,” Dr. Goff concluded. “This is serious stuff but we will be doing our best to get these hurdles out of the way so we can proceed with starting chemo on Friday.”

That night we were able to stay in the lodge. For the first time in many nights Suzi and I shared a bed, something that had been difficult with the enormous “pillow pile” her limited mobility necessitated and a need to wriggle and squirm caused by general discomfort. That night at the lodge we both slept soundly all the more comfortable that we were able to be closer to each other for one evening at least as the days ahead promised plenty of time in a hospital bed. Suzi was ordered no fluids or food after 12 AM in preparation for the procedures the next day and at 5 AM we returned to the hospital as promised to receive hydration via an IV in order to prep Suzi’s body for the renal scan. Also scheduled would be the bilateral thoracentesis as well as the placement of a Hickman catheter – essentially a second port for the administration of the chemo and cells – it looked to be a busy day. After much confusion about who was doing what when and at least 1 false start, by 9:30 Suzi was headed down for the renal scan.

When we arrived back at nuclear medicine the miscommunication continued to mount. Suzi asked for an ice chip to satiate her dry mouth, but the nurse offered water. “I can’t drink water,” replied Suzi. “But you have to drink for the scan,” she replied. The doctor administering the scan then showed up and was confused why they would send her for a scan without hydrating, but finally he said “well okay we will get what we can.” I took the opportunity to advocate for Suzi, who was already tired out by all of this, and I made it perfectly clear that they wouldn’t be getting “what they could” but would sort out how to properly hydrate Suzi so the scan had relevant results before not after they gave a radioactive IV and put her through an hour long procedure. After extensive back and forth between the doctor administering the scan and the doctors in the immunology department that included some amount of insult to their respective expertise they agreed that an IV hydration would be sufficient but it needed to be reconnected. Two exasperated Fellows arrived holding an IV bag a few minutes later. Finally Suzi went into the scan and an hour later came out none too concerned. The plan was to head straight across the hall to the Interventional Radiology (IR) department for the other procedures once it was clear the kidney was functioning, however after 45 minutes of waiting we decided to head back to the room to relax. One thing I have learned here at the NIH is that when things take too long or go too quickly it is usually cause for concern. This time it was no different. Indeed after consultation between all of the doctors they had agreed that the right kidney was only processing 30% of Suzi’s urine with the other 70% going through the other kidney, and that it was likely due to a constriction in the ureter, meaning that replacement of the stent was recommended. Suzi and I made certain that this recommendation was taken into context and the risk of “losing access” ie not being able to re insert the stent after the original one was removed was factored in. Ultimately this meant that there was a possibility that she would need a nephrostomy bag instead if the stent couldn’t be replaced, and she would be both peeing and pooping into a bag. Not ideal, but most importantly we confirmed that this outcome wouldn’t preclude her from the trial.

In the midst of all this the eccentric and giant hearted Chaplain popped in. She got sideways glances from each of the innumerable doctors rushing in and out of Suzi’s room with forms to sign and question to ask or answer. There was plenty of urgency to keep things moving as Suzi’s chemotherapy was slated to start on the next day and all of these things needed to be completed in advance. The Chaplain calmly walked up to the bed and began unpacking the gifts she had brought “I shop the dollar stores” she proclaimed, producing electric candles, supplies to make our own prayer flags, a CD of Ganesh and Hanuman chants and a flameless Nag Champa incense diffuser. She had been by several times over our visits and had learned Suzis’ spiritual tendencies, while she herself had a Christian leaning, she “liked god in all flavors”. She had an extensive knowledge it seemed of all religious traditions, proclaiming the day before that the coming Monday was the feast of Ganesh as she handed us miniature Tibetan prayer flags to decorate the room. She claimed her space and importance in the midst of the well intentioned buzz of the doctors each doing fulfilling their own duties, and while at first I was surprised she didn’t offer to come back another time, I was quickly relieved that her presence reminded us to take a breath a deep breath of the real essence of what is at this tumultuous time. This is something more easily pushed aside at times like this than usual, but never more important. A, doctor new to us, had stepped in and waited patiently for her to finish her gift giving and conversation. As she was getting ready to leave he caught her. “ Can I get a smell of that?” he asked, referring to the Nag Champa incense. “ Wow what is that stuff – that smells great, how do I get some for my office?” IMG_3192I speak for Suzi when I say that we both liked him instantly. He then expressed his condolences for all of the poking and prodding Suzi was having to go through in one day, and explained that he was from the IR department and would be doing the thoracentesis. He clearly understood the context of everything that was going on and most of all had a sincere compassion and understanding as well as a gentle and humorous manner in the midst of all of the mayhem of, as he put it “Twenty doctors wanting to do thirty different things to you”. Bedside manner at its finest. He explained that after Suzi’s stent replacement he would do the bilateral thoracentesis, normally he would only do one lung each day to make sure they hadn’t compromised the function of one before moving on to the next, but in this case, with the pressure to get things done so Suzi could be ready for her expanding cells they were going to attempt to do both in one day. With all of the miscommunication that had gone on so far that day, Suzi and I both felt comfortable that this doctor’s portion of the work could be trusted as well as his clear communication with the rest of the doctors on how best to orchestrate all of the procedures to minimize stress and maximize efficiency.

Envisioning success with the stent replacement Suzi was wheeled yet again into the pre-op room. Her mouth was dry after over 12 hours without water as she answered the questions and queried those of her own to the urologist, his team, the nurses and the anesthesiologist. This was at least the fourth time Suzi had been down to this pre-op room and I couldn’t help think of the many other times I had given her a last kiss goodbye in other pre-op rooms in the last years. Again she was whisked away and I was left glancing occasionally at a screen in the surgery waiting room with her 5 digit number displayed amongst others as they painfully slowly progressed from Pre-op to Operation to recovery. I was more nervous than usual, and also more relieved than usual when I got a call to be informed that everything had gone well. Shortly after I was in the recovery ward with Suzi, who was groggily coming to. Eventually I learned that they had opted to replace her single stent with two parallel stents, in essence doubling the drainage of the ureter. Everything had gone well and she had tolerated with minimal sedation meaning she would be ready for the next procedure shortly. After a brief respite to recover they began preparing Suzi for transport to the next event. FullSizeRender-12Just then Suzi’s mom, Linda showed up to join our entourage as we travelled to the IR department. Once there we learned that “the minute hand had taken too many trips around the clock” for the original IR doctor to perform the thoracentesis, but he gave his word that Dr. Cheng, his associate, was equally capable and ready to go forward. Over the next hour both lungs were drained as much as possible, confirmed by two different x-rays. All told 2 liters of fluid were drained from her lung space. Finally after a long day we were able to join Suzi in her hospital room and watch thankfully as she slurped down a caribou broth noodle soup. She was exhausted. When Dr. Goff stepped in with the array of doctors for the afternoon rounds, she quipped “You run one hell of a marathon here Dr. Goff” a literal gest as Dr. Goff was actually training for a half marathon at the time. Dr. Goff replied “ Today was a lot, we had to get you through these hurdles before treatment so they don’t turn into mountains later on.” She then gave a brief synopsis of what to expect in the days ahead beginning with the placement of her catheter for the infusions the following morning, followed by a final decision on whether to move forward with the trial and then administration of the first round of chemo that evening. Suzi would likely need to be spending the evening in the hospital for most of the next two weeks give or take 2-3 days next week, and tonight would be no different, they needed her on an IV to replenish fluids to wash out the radiotracers used for the scans, and to prepare for the journey ahead. She assessed that we were now at a 90% certainty of moving ahead and would sort out the other 10% and decide tomorrow. Again leaving us slightly at the edge of seats.   Her demeanor however once again carried the day and left Suzi as usual with more of a sense of ease than she had exuded all day.

If that 10% all comes out the right way Suzi will start a 5-day chemotherapy regimen today, Friday, September 2 at 4 PM Eastern time. The Chemotherapy will be most difficult for the next two days but will continue until next Tuesday. On next Wednesday, day T minus 2 (as Dr. Goff counts the days of the protocol days prior to cell infusion), she will get a single infusion of pembroluzimab, a PD-1 checkpoint inhibitor, and then on day T minus 1 an “off day” that only requires a couple of drugs via transfusion in the evening. On Friday, Sept 9 she will receive a single massive infusion of about 30 billion of her T-cells and doses of Interleukin-2, essentially the soup the T-cells have been bathed in outside of her body and are acclimatized to, every 12 hours for the next few days while they adjust to their new and original home.

So for all of you out there who are in Suzi’s blog land who have been rallied to get out the spiritual pom-poms to send good vibrations and your enchanted, ethereal assistance, however you personally do it – keep it coming, she can use all she can get, and an especially healthy dose to send her cells on their way home to her body next Friday and the days after.