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.
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.
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.
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. We 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.
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.
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.
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.
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. Now 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.
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.
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.
Suzi and I in Tesuque, March 2016