Julie Noelle Vogt, 38 years young, passed away early on Sunday morning, December 4th.
Hi...I’m Julie’s husband Todd and I’m authoring this post to let everyone know about Julie’s death - and also give some insights from my point of view regarding the journey that Julie, Miles & I have been on the past few months. I will say at the outset that I am nowhere near as proficient nor beautiful as Julie as a writer so please forgive the degree to which this effort pales in comparison to her earlier posts.
In an attempt to tie together a few threads, my goal is let folks know how the final act played out as Julie’s life ended, a little about what we’ve learned during this journey, and offer a few of my thoughts on where our family and community of friends goes from this point. I've decided to share more vs. less, so that those that loved Julie might find some solace in knowing the events that led up to this point, and also so that perhaps someone else who finds themselves or someone they know on the same path can avoid some of the issues we encountered.
- The End
The most difficult issue for Julie & I to deal with in the past month was the rate at which her condition changed. The analogy I’ve used in conversation is a linear or cubic growth pattern vs. an exponential growth pattern (pictures help: http://www.knewance.com/comparisons/linear-v-polynomial-v-exponential-v-logarithmic-growth.html) - in no way was it a steady increase, which could be anticipated to a certain degree and planned for/dealt with. It was okay for awhile, with some semblance of normal life retained, and then it got worse, and then it was a LOT worse all of a sudden once we hit the inflection point and we started “going vertical.”
I have been struck by the observation that in conversation with friends/colleagues that are clinicians, none of them are surprised by this analogy. Which leads me to...”why didn’t anyone tell us this?!” It would have been nice to have some forewarning. Perhaps we could have adjusted our behavior, or at least been less surprised when it occurred. I know that no one has a crystal ball and every patient is different, but the universal head-nodding I saw when I used this analogy makes me believe that there is a trend across the overall patient population with advanced disease.
So what “went wrong?” Here’s a brief overview (and a note: In many regards I turned into Julie’s pharmacist & nurse during the last few weeks, and I think it may be useful for folks to hear about the types of treatments used to treat her symptoms. My goal is to be instructive about how challenging it can be, and how many substances are thrown at patients with advanced disease):
- Wednesday before Thanksgiving: We are advised by the hospice nurse and our oncologist to go to the ED due to shortness of breath. This symptom is occurring not only when Julie is climbing stairs, but just when she is laying in bed or walking around the main floor of the house. Although Julie has been staying primarily on the main floor of our house for approximately the last week, she still absolutely loves long hot showers and goes upstairs at least once a day. Julie had previously had liquid drained off both of her lungs during admissions to the hospital, so there was thought that perhaps another thoracentesis could be performed to make her more comfortable and improve her ability to be mobile. After the diagnostic testing was concluded, we learned that she didn’t have significant liquid in her lungs and the shortness of breath was due to multiple pulmonary embolisms in her lungs. The term that resonated most with us was “air hunger” - the body is actually receiving adequate air, but it feels like you can’t get a full breath. From this point forward she was never without oxygen, and we started a steady regimen of small doses of morphine to combat the sensation (one of the only ways to treat the issue...there is no cure, you just try to reduce the symptom). In summary - it wasn’t a severe risk, but there was no cure. So we adjusted our expectations regarding activities of daily living and went back home to keep living as best we could.
- But the MD in the ED cried as he explained the situation. Which was odd, because it didn’t seem that bad to us. It wasn’t the first time that we’d heard that the end was approaching.
- I’ve used an analogy to help prepare most of the folks that have visited our house in the recent past - there is a story about how if you put a frog in a kettle of water on a stove and slowly raise the temperature of the water, the frog won’t jump out. He won’t figure out that he’s boiling to death and will just sit there. But anyone else who would put a finger into the water would say “Ouch - that’s really hot!” That’s what our lives are like these days -- the water we live in is pretty darn hot. But we’re used to it - it’s our version of “normal.” However we’ve had a non-stop stream of friends and family come and stay with us since August (we’ve only had about 4-5 days by ourselves in the house. And for the most part we’ve needed every second of the help and are very grateful. But you try & share your life with loved ones for that period of time and see if you don’t crave solitude every so often...), and they wade into our kettle and feel the water and freak out. So we - or more often it’s me, since Julie would rest quite a bit of the time - would go through the emotional processing that is necessary when folks see someone they love in dire straits. I started to tell this story as I drove folks to the house from the airport or bus stop, so that they would be a little more prepared. I didn’t want them to not share their feelings and thoughts - I wanted them to know that it was natural and normal and they needed to let it out before they exploded. But I warned them that they were about to enter a very hot pot of water and they better be prepared, ‘cause it ain’t easy.
- Friday after Thanksgiving: starting around 8p we enter a crisis where Julie’s symptoms of pain and nausea can’t be managed. I exchange calls every hour with Hospice nurses up until 1am to gain advice on what to try. For the first time we break into the “comfort kit” provided by the hospice service, trying liquid morphine, liquid ativan, phenobarbital suppository, compazine suppositories, hyosyne...and Julie’s maxalt that was prescribed to combat migraine headaches on top of it all. Julie has uncontrollable retching - the pressure in her stomach causes her to induce retching every 15 minutes. I have to physically restrain her to keep medicine down after midnight so that it can take effect. It is an incredible tense period of time when I can’t believe she’s still standing, she is literally a zombie from all of the medications she’s taken but her body simply won’t succumb to rest. All I want is for her to gain some measure of comfort, but have to battle her to take a medication and keep it down. We both cry from frustration and exhaustion. At 2 am she finally falls asleep...for almost 3 hours (which is a long stretch of sleep at this point).
- For the next 5 days we have an increased hourly regimen of medications - some given every 4 hours, some every 6, some every 12, others every 48 hours. We keep track of all of them in a notebook - and add-on the one’s given for emergent symptom management (e.g. PRN). The calls to hospice occur more frequently to receive guidance, and nurses are visiting the house daily. I adjust doses between 1/4, 1/2 and full pills; 1/2 ml to 1 ml of liquids and guess to a good degree of what should be continued vs. stopped. All of this is based on what Julie says is working for her, my observations of whether she tolerates the medication (it stays down) and how much it zonks her out. We are trying to balance on a fine line between coherence and comfort, with the emphasis changing depending on the time of day (more comfort at night, less during the day so that there is more coherence for conversations & interaction). We are still trying to have some important conversations and work on projects to project Julie into the future for our son, so the clarity seems like an important goal and worth the challenges that it presents. Our daily diary of medications administered grows from one to multiple pages, and I do my best to recount it to the hospice nurse and other clinicians when they call/visit or we have an appointment (or visit to the ED). Although Julie has been enrolled in hospice for several weeks, we still have not had a visit from the hospice physician. The hospice nurses are consulting with him occasionally regarding doses and substances, but for the most part it’s me & Julie on our own, with occasional input. It’s working - somewhat.
- On Wednesday November 30th, around 2pm, Julie’s symptoms start to spiral out of control, even though we had just been visited by the hospice nurse. It’s an example of even with supervision, things can change on a moment’s notice without warning. I’m in conversation with hospice via phone, and we’re administering medications every hour to see if we can control the nausea & pain. At 8p we decide, in consultation with the hospice service, that we should go to the Emergency Dept. The constant retching is the most concerning issue - we have shifted to giving all of Julie’s medications via her stoma (ostomy) because nothing can be kept down orally.
- And oh-by-the-way, this would have been a really fucking nice piece of information to have about a week earlier! When the hospice nurse told me that any medication could be administered via the stoma - not just suppositories - I was floored. If we could have used that route to avoid a lot of the nausea that came from trying to stomach the nasty tasting medicines in both pill and liquid form, I think that we likely could have managed some of Julie’s symptoms a lot more effectively.
And this is where we have a head-on encounter of a situation I’ll call “Theory vs. Practice” (however, upon further reflection I don’t believe that they’re oppositional & can co-exist). Julie & I are very familiar with the Dartmouth-Hitchcock emergency department, and she is quickly assessed and transported back to a room. However, for the first time, a physician - in his wonderfully factually and straight-forward way - asks (or more accurately, states) to us “So, I understand that we’re only implementing comfort measures, correct?” This statement gives us great pause, and the only thing I can muster in response is that we’d like to know what the issues are, so that we can make a decision regarding whether we should pursue treatment or not.
Comfort measures only, for the uninitiated, means that no treatment will be implemented. The patient will be made comfortable, but it is acknowledged that the situation is untreatable and all that can be done is palliative care so that there is as little pain and discomfort as possible. It means that the clinical teams will not attempt resuscitate if the patient deteriorates. The patient is tagged as “DNR” so that if body systems stop working, no efforts will be made to resuscitate. It means, in some regards, that death is imminent. “Holy Shit!” I think, this is not what we expected to hear. While Julie & I have talked at length regarding her wishes, and our acknowledgement that her disease is advanced and there is no curative treatment, we hadn’t yet passed the threshold of “any day I’m going to die”.
Over the course of the past 10 days, Julie has looked at me several times - usually late at night as we’re doing our best to ensure she’s comfortable and generally failing - and said “Todd, I’m ready. I’m in too much pain and I can’t handle it any longer. I know that everyone wants me to keep going, but this is too much.” Julie is in no regards a quitter - she has an indomitable spirit that drove her to the heights of her profession and personal life - but a person can only take so much. Especially when they know that there is no cure, that we’re just doing our best to forestall the inevitable. And there are many tasks she (and I) wanted to complete. We didn’t come close to getting them all done - and I console myself by thinking that at least we accomplished a few. There are many families that have loved ones taken from them in a split second, with no opportunity to try and project themselves into the future.
So...we’re admitted to the hospital at 3 am Thursday with a suspected block of the intestines and due to the constant retching Julie’s system is all screwed up - electrolytes, sodium, potassium, renal function - all are compromised. For a day and a half they do their best to normalize it all. Julie has a nasal-gastric tube inserted into her stomach to vacuum out some of the crap & blood, but she can’t stand it. On Thursday night I leave the hospital at midnight to get a few hours rest, and she’s being well-attended to by the clinical teams. We’re aware that the best scenario is having the tube stay in place, and that she only has a week or perhaps two more to live. I call her family to let them know that the situation is dire and that they should make plans to come in the near future.
On Friday morning I bring Miles to the hospital to see Julie -- since our daycare is at the hospital, he is very used to being at the medical facility. Julie has also had several admissions over the past 3 months, so he’s used to climbing into her hospital bed (no shoes allowed!) and talking/playing/cuddling with her. We write down his wish-list to Santa, and get a few suggestions from Mom on what to include. Then he & I walk over to daycare to start his day. It’s a good start to the morning. When I return, I see our oncologist on the unit and ask him what the status of the lab tests are. Are Julie’s systems/numbers stabilizing? He asks if we can talk in the room. (As an aside - when a clinical team pulls you into a room for a conference, it’s rarely a good sign) The attending physician is blunt, and we’re grateful for the honesty. The situation we find ourselves in is that Julie’s body is not stabilizing - despite their best efforts, the various levels that are measured keep wildly fluctuating. Therefore we have reached the point where it does not make sense to continue to try and treat the symptoms. We are guided to accept that from this point on it is “comfort measures only.”
Oh. Shit. Fuck. Goddamn.
Julie and I are holding hands, and she understands what this news means. We’re informed that it could be today, it could be tomorrow, but there are only days left. If anyone is going to come into town and see Julie, they need to get on a plane today or tomorrow at the latest. The oncologists assure us that Julie will be comfortable, that the pain will be managed. I ask about the end - is it a fantasy that we could go home and have Julie pass away there, or will it be violent thrashing and ugliness and we’d be better off with the attention and resources that the hospital offers? The MD says no - it’s not a fantasy. When the body’s system shuts down, as the cells stop working, they produce materials that essentially “put the body to sleep.” And the rest will be managed via an IV with medications. This clinical team fully supports us going home - so we’ll put a comfort measures plan in place today, make sure the levels of the substances are adequate, and plan for a transition back to our house on Saturday around noon. But we have to accept the fact that at any point Julie could pass away -- ok, ok, sure. It’s okay to have a plan (go home) and we’ll adjust that plan as conditions warrant.
Back to my “theory vs. practice” theme - it has been all well & good to discuss end of life measures with the different clinical services up to this point. But when the ED MD mentioned comfort measures; when the registrar in the hospital put the DNR bracelet on Julie’s wrist; and at several points in the day to come when we transition back to the house I find my gut clenching and my head screaming “WHAT, NO! NO WAY! FINE TO TALK ABOUT, NOT OKAY TO PUT INTO PRACTICE. FUCK NO FUCK NO FUCK NO. I DON’T WANT MY WIFE, MY FRIEND, MY WHOLE GODDAMN LIFE TO GO AWAY!!!”
But there is no stopping the momentum of this journey. We can only move forward, one unsteady step at a time. So we cry and we hold each other, so tightly, so very tightly. As if gripping each other would somehow hold the evil reality at bay. Even if we can have a few moments of suspended reality, so that we can dwell in each other’s love for a moment that can be extended into an eternity -- well, that’s worth the effort.
I walk out of the room to get Julie a cup of hot tea, and manage to call all of her family members and mine in the space of a few minutes - telling all to get on a plane immediately. I’m glad that I had talked to them the night before - and this is a good example of how fast and how incredibly things can change once that inflection point is passed. A few hours ago it was “weeks” and now we’re down to “days.”
The rest of the day is a blur. There are two events that stand out:
- The Palliative Care team comes to see Julie & I, and we discuss the plan that was laid out with the oncology team (Go Home on Saturday). They hadn’t talked with Oncology yet, so it’s news to them (Note - see points below regarding patients having to act as the aggregator & cross-checker of news and plans). They say that they’ll start working on it (since they’re the ones that manage the pain medications and do the most to help ensure the comfort of patients with terminal diseases) and be back to talk. About 30 minutes later they come to the room and ask me if I can step out for a conversation (uh oh...). So I step into a conference room and am joined by three members of their team. They don’t beat around the bush at all - they say that they don’t think that Julie can go home. There are medications that can only be given via IV, and are usually administered by a nurse. And the type of IV tubing/hookup that’s necessary isn’t available via hospice care. So in order to sufficiently manage her condition, they advise staying in the hospital.
What? What the fuck? This is the point where I lose some of my composure. I have to be careful, because I work here, but this just isn’t acceptable. In the most diplomatic way possible, with my voice wavering with anger, terror and anguish, I inform them that it is not ok that they are not in synch with their clinical colleagues on the oncology team, that it is not ok that they “sold” one bill of goods as we’ve worked with them since August (dying with dignity & comfort at home) and I feel that we’re experiencing a bait & switch at the eleventh hour (only those that qualify within a constrained range of physical/clinical circumstances get the gold ring of passing in a non-clinical setting), and (dammit) I’ve been offered help from every level of our organization - from the president(s), officers, vice-presidents on down the line - and I haven’t asked for hardly a thing but now I’m asking (no, I’m pleading) - I need you to go back and work with a “yes, if...” point of view, not one that states “no, because...”. Julie needs to be at home, to see our pond and trees in the backyard, to see the christmas tree twinkling in the living room, and not be in this damn hospital with a line of family members at the door queuing up to spend time in a crowd around her bed in a small room with poor lighting and bland walls. no No NO!
They say that they understand, and they’ll put their heads together and get back to me shortly. A few minutes later, the palliative care attending MD comes up to me and asks (or states) that I should consider using Skype, so that Julie could “see” the things I mentioned at home. I look at her coldly...and I can’t remember what I said, because it was drowned out by the nasty things I was screaming in my head.
I go back into Julie’s room, and am thinking about how to move forward past this obstacle. I’m about to call a co-worker that I think can potentially help me find a few nurses willing to get paid for private duty work over the weekend to manage the clinical issues at home. One step at a time - but I tell Julie that there is no chance in hell that I’m not going to move heaven and earth to make one of her final wishes happen (Get Me Home). As I walk out of the room to make the call, I see the chief of the Palliative Care service come into the unit. He and Julie first met when she was initially diagnosed - we had the incredible fortune that he was the attending physician on service that week and he had some of the first challenging discussions with us about Julie’s diagnosis and prognosis. He and Julie had struck up a bit of friendship, and they had stayed in touch throughout the course of her treatment over the past few months. He was coming by to pay a social visit for a few minutes - and gives me a hug before we walk in the room.
We sit down and Julie perks up at seeing him. It is a struggle for her to talk, but they have a short conversation. As always, his presence is calming to her and I’m grateful for the visit. He asks how things are going - and I inform him of the challenges that we’ve just encountered with the folks on his service, that I don’t understand why “simple” logistical issues like equipment and personnel can’t be overcome. It’s not like she’s a patient in a critical care unit on life support, after all. He looks at me, as I openly cry and ask humbly for assistance to help us reach this goal of going home (I do not like asking for help - it’s a strong personality trait. I ask infrequently, but when I ask, I typically really need the help. This trait extends from my personal life into my business life - and it is challenging for me to separate my business life from my personal life while we are cared for at this medical facility - but I ask for even less favors/help at work). His face is stoic as he looks at Julie and I and he states “We should be able to make this happen. Let me work on it.” Our hearts lift as he walks out of the room.
A few hours later I’m called out of the room for another conference with Palliative Care. This time it’s for a good reason (thankfully) - they’ve come up with a plan to provide the equipment, medication and personnel to help us make the transition to home on Saturday afternoon. Great - thank you. That wasn’t so hard, was it? I am still unclear on why it was such a challenge to reach this solution in the first place. If it isn’t the norm - why not? Perhaps I’m learning that the evolution of our current medical practice to return to the norm that existed for centuries (being born and dying at home) is happening slowly, and we just happened to have our conversations with a proponent (the chief of Palliative Care) of pushing medical practice in that direction. I was shocked that everyone on that service wasn’t on the same page with helping patients die with dignity and comfort in familiar surroundings. But there have been many lessons learned during this journey.
- The other significant event includes Miles. When I dropped him off at school that morning Julie had weeks left to live. Now the whole ballgame has changed. Julie & I have a call with our brother-in-law, Peter, who is a child therapist (perhaps “analyst” is the correct term, I hope he forgives my ignorance). He has been incredibly helpful every step of the way in the last three months with guidance on how to introduce subjects to Miles and help him wrap his young brain around these large concepts and gigantic events. We had talked with Peter a few days before Thanksgiving, and had planned (due to Julie’s wishes) to talk with Miles after Thanksgiving about the fact that Julie is going to die. But we hadn’t - due to all of the issues & events outlined above. So while we had connected many of the dots between people getting sick and sometimes they get better, sometimes they stay sick, and sometimes they die - we hadn’t connected the last dot to help him understand that Mom was going to die. We wanted to do so to give him time to interact with Julie while she still had many of her faculties, and wasn’t totally bed-ridden. But now there was no more time, and we had to do it this afternoon. Peter provided the excellent guidance of being straight-forward with Miles, and giving him the opportunity to say good-bye to Mom by saying what he loved about her, what he would miss, etc.
So I walk over to daycare around three o’clock to pick up Miles. We walk back to the hospital together, with him riding on my shoulders and we talk about his day. I’m barely holding myself together, but doing my best to wait until we get to Julie’s room to fall apart. Long story short, we have the most difficult conversation a parent can have with their child. Julie’s ability to speak is limited, so I have to do most of the talking. She tells Miles how much she loves him, and that we’re sorry that it has to be this way. I try and explain that the adults have done everything possible, and despite the best efforts of the doctors and nurses, and Mommy and Daddy, Mom is sick and is not getting better, and is going to die. She might die today, or tomorrow, or maybe the next day. But it is going to happen soon. And now it’s important for you to say good-bye...
He does the best that he can, and we help guide him a bit. Then he & Julie cuddle with some big hugs (and he remarks that all of her implanted equipment makes it kinda painful to hug. I have to say that Miles has been incredible accepting of the ostomy, implanted port, abdominal drain and other hoo-haw that Julie has had done to her over the past three months. I think part of it is a reflection of Julie treating it as not a big deal and not trying to hide it from Miles, and his remarkable tenacity to love and accept Julie no matter what) and he starts to get restless. We don’t want him to leave, but it’s dinner time and it will be time for bed in the near future. One thing that is important to Julie no matter what - literally - is maintaining a schedule for Miles that he can rely on. We believe that it’s the key to maintaining his happy demeanor. But I’m not leaving Julie’s side, so our friends - our valiant reliable incredible friends - take him home for the evening. (I can’t believe that we had to send our son home without either of us after delivering such terrible news) He doesn’t want to leave, so we resort to letting him know that he can watch cartoons. We don’t want him to go - but as difficult as it is we have to be good parents first and foremost. I call and check later to see how it went --- and there weren’t any issues. I am STILL waiting for the other shoe to drop - I expect there to be wailing and crying to the tune of “I WANT MY MOMMY” - but as one friend said, it might not happen for years.
The only other thing to remark upon for Friday is that I talked with many of our friends, and some had the opportunity (via speakerphone) to say a few words to Julie. She told them that she loved them and missed them, when she was able. It brings to mind the age-old question “What would you do if you knew you only had weeks, days or hours to live?” Sadly, and I believe this is the case for most folks but I’m only guessing, is that the answer is “not much.” By the time this knowledge is gained, the body is degraded to a point that it isn’t possible to do much of anything. In our case the focus was on making Julie as comfortable as possible, and letting her know how much she is loved. Julie lost the ability to talk late Friday. She could still communicate though - she gestured as best she could, and I interpreted as best as I could until she was satisfied. I stayed the night and positioned the chair so that I could hold her hand without interruption. Her brother & sister arrived after midnight, and we talked for a few hours. Once we were alone, I slept for a few moments - waking with a start every few minutes and checking to see if she was still breathing.
There were no more obstructions to going home - so a little bit after noon on Saturday we prepared her for transport. There were tearful goodbyes and hugs with the nursing staff as we left the unit. They were so incredibly supportive and loving during the course of this admission, they made all the difference in ensuring that Julie was not in pain and all of her needs were met. I am still searching for a way to express my thanks.
We were transported via ambulance to our home - and I am grateful to the ambulance crew to letting me ride next to her and tell her where we were every step of the way (another bending of the rules). My parents had been busy with Miles all morning long, ensuring that the house was merry with Christmas cheer by the time that Julie and I arrived. And it was a beautiful sunny day, with the pond in our backyard shining brightly. A private duty nurse was present and the hospice nurses helped coordinate the care to be provided until Julie passed away. Once all of the conversations with the clinical team had occurred and everyone in the family had arrived, I sat down with our family and went over the expectations that Julie and I had. Why were we at home vs the hospital, what is the goal and how do we get there (what should we do, who should do what, etc.). I wanted to ensure that someone was always sitting with Julie, holding her hand and talking with her. The room couldn’t be a normal living room - too many conversations or television could be cacophonous and we needed to focus all of our energies on Julie (even if this process took many days). I assigned one person to make sure that Miles was looked after - one of the points of guidance from our brother-in-law was that we needed someone that was in tune with what Miles needed. The point was to let him lead - if he wanted to be in a room, then let him. If he didn’t, go with him out. He would let us know if he was uncomfortable or not. I truly didn’t have much apprehension about how having Julie die at home would effect Miles. It seemed normal and natural, and I thought it would be better than having her isolated in the hospital. If all of the family is there and supporting Julie, then how could it be wrong? And if it turned out to be hard for him to handle, we’d whisk him away and ensure that he was supported and cared for.
- In case Julie hasn’t written about it earlier, I’ll take a moment to mention that there have been a few key messages that we’ve emphasized to Miles throughout this journey (per guidance we’ve received): It’s okay to worry about Mom, but it’s not your responsibility to make her better. That’s the adults job - and the doctors and nurses and daddy and grandparents are doing everything they can to help Mom. And, perhaps most importantly, you (Miles) will always be taken care of. Dad and the rest of the family are going to make sure that you are safe and have what you need. So you aren’t in any danger. So far, it’s appeared to work (and we are incredibly thankful). Miles has remained confident and happy, and there have been minimal instances of emotional behavior that’s not consistent with his “normal” moods. We have been very lucky to have the incredible support of our daycare staff - and in keeping them in the loop of what Miles knows and the conversations we’re having with him, we’ve stayed in-synch in order to offer him the support he needs throughout this journey.
The point of these conversations with the family is that I was pretty much at the end of my line for energy and stamina. I’d been up for days on-end with very little rest - and had been at the hospital for the last 48 hours. I needed others in the family to take over some of the duties of caring for Julie.
But I just couldn’t break away to rest, even though it was very appealing and others were offering all the assistance that was necessary. Julie’s condition seemed “stable” - but the words of the hospice physician that had come to the house that evening echoed in my ears - “I will be surprised if she’s still with us in the morning.” So I showered, ate, and then took turns at her side and held her hand, rubbed her feat and stroked her hair as I talked to her, sang along to music on the stereo and talked with family. Other members of our family did the same, and I am deeply grateful that they were present to help. At one point we were all sharing stories about Julie - how she & I met, adventures she had as a child with her siblings, what she was like in college - and there was a good amount of laughing and loving in the air around her. I don’t understand how it is known that the dying keep their sense of hearing up until the end, but it is heartening to believe that Julie heard us celebrating her throughout this time. I kept reminding her that she was at home, that she was safe, that we all loved her very much and that we weren’t going to leave her (no matter what). What does a dying person want to hear? I have no idea - we just tried to do the best we could to be reassuring and ensure that she was aware that she was being taken care of as best as we could manage.
Eventually her breathing started to become inconsistent, and we knew - with the guidance of the nurse - that her time was drawing near. We all gathered around her bed and held her hand. I told her not to worry and to let go, that it was okay. I tried to quote Romeo & Juliet - “parting be such sweet sorrow, let me...ugh..do it until tomorrow” and laughed that my Shakespeare-scholar wife would rise up & smite me for getting it wrong. But I wasn’t going to do an internet search at that moment to figure it out. I did remember one fitting quote and I whispered into her ear with strong conviction that “It is better to have loved and lost than never to have loved at all.” I will always have a raging fire of love for Julie - our love was born of fire: initiated out of the Burning Man community, dating with raging fire of passion, a friendship with a smoldering fire, recognized and rekindled in each other on the playa at Burning Man, proposed in fire in our backyard, married at Burning Man, stoking the fire throughout our marriage with care and loving whenever possible, celebrated in fire in our backyard for our seventh anniversary this September, and most importantly in the eternal fire we hold in our hearts for each other. I will never regret a moment of our life together - although it hurts like hell at the present moment.
Finally her breath stopped drawing, and her inner flame petered out. Make no mistake - it was difficult watching her die. I never stopped hoping for a miracle, because I always wanted one more minute with her. But I recognize that the living have to stop being so greedy - at some point we need to give up our hunger for our loved ones, and allow them to reach a place of peace and tranquility. Julie and I had a relatively long time to come to terms with her death, and it was incredibly soothing to be with her at each of the last steps of her journey. I know that she was well cared for, that we had done as much for her as possible, and that helps me be at peace in some regard. I hope it is the same for the rest of our family. Some of the writing that Julie & I have absorbed in the past months - I believe we read this in the New Yorker article that Julie has cited - speaks to the fact that families that don’t try up to the very end for a miracle cure by throwing every last medical intervention at the dying have less stress after the death of their family member. And I am here to testify to that as well. It is never easy, under any circumstances, but I believe that this was as peaceful and painless as a death can be - and if a death can be beautiful, this one was.
At the end of the ordeal, when Julie’s body was removed by the funeral home and the lights of the house were turned off, I noticed something. We had put a feather bed on top of the hospital bed that the hospice service had delivered because the mattress was too hard to be comfortable for Julie. I touched the feather bed as I headed upstairs for what I anticipated would be a very challenging night of sleep - tracing where Julie had lain - and felt that it was still warm. The feather bed had captured her body heat and retained it! I quickly folded it up and carried it upstairs with me and laid it on her side of our bed. Then I turned off the light, took my shirt off and laid down on top of the feather bed, and my body heat melded with hers for one last time. I fell asleep quickly, comforted as I had been for 7 years of marriage with my partner (and a few more years beforehand when we were dating/friends/not sure but having fun) - reassured by the heat of her body and love that she gave to me. This end note was unexpected and unplanned, but immeasurably beautiful and I will treasure it for the rest of my days.
- I have thought many times over the last 3 months about what I would miss most about Julie. The items that are the hardest to reconcile with are those that are the most intangible - the taste & smell of her cooking (which was amazing - I was spoiled rotten by her creativity and talent), the sparkle in her eye, the smell of her hair, the warmth & texture of her skin. Things that can’t be preserved by writing, photos, movies...but there will never be enough of those either.
I am so incredible fortunate to have married my best friend. Apart from being my wife, my lover, my son’s mother and all other ways of characterizing Julie, our friendship was the bedrock of our relationship. We could fight & then look at each other in a short time period and start to laugh about it. We care deeply about each other, and it showed in everything we did. I chose to spend my life with Julie because I knew that it would be near impossible to find another person who loved me so absolutely. She gave & gave & gave - and it made me incredibly happy to give back & try my best to spoil her. In my opinion she always gave more than she received - but if you asked her she’d invariably say that it was the other way around. And isn’t that the recipe for a great marriage & partnership?
In closing this section, I have a request for everyone who remembers Julie. As I have thought about how to eulogize her life, I have found myself using the past tense by default - e.g. Julie had..., Julie was..., Julie did..., etc. It is difficult to avoid. And then I realized that this tense is incorrect - for I believe that it is a natural extension of this logic to say that “we loved Julie.” Which I think implies that our love for Julie is in the past and at an end, and that should never be the case. We LOVE julie, and therefore I believe that we should continue to talk about her in the present tense. She IS, forever, in our hearts and minds, a present presence that we deal with on a daily basis. I, for one, will never live without her.
2. Lessons Learned
As an employee of a medical organization, I work daily with physicians, nurses, pharmacists, allied health professionals and other members of clinical and administrative teams. I believe that I am fairly proficient in understanding clinical processes and talking with clinicians. But Julie and I were completely overwhelmed in how much information was delivered, how fast it came & the rate at which it changed. I have no idea how “regular folks” who don’t have similar familiarity with the medical profession deal with it. In fact my aunt, who works with long-term care facilities, states that most don’t. They shut down and it all washes over them, as they become numb in response to the new terms, people, etc. If we are truly going to offer “patient-centered care,” then there is a long path to travel to make the information understandable and not overwhelming (i.e. it needs to be deciphered and delivered in a coordinated manner across all services caring for the patient).
The challenge is not only the technical/scientific nature of the information, but the number of players involved. In Julie’s case, when she was admitted she would have multiple clinical services assisting. This meant daily visits from oncology, palliative care, and internal medicine (hospitalists). Depending on the issue we were dealing with at the time, it also included interventional radiology, radiologists, gastroenterology, surgery, care management and others. And then there are the multiple visits per day from nursing staff, dietary services, and the wonderful volunteers that come to assess spiritual needs, offer massage, or determine if any other needs are going unmet. The cumulative effect of these caring services results in a patient being inundated with visitors all day long, and it is very challenging to rest and recuperate. Julie often didn’t have time to eat during the day because of the constant interruptions.
I knew, from my profession, that certain clinical services were responsible for different parts of Julie’s treatment and therefore we should only listen to part of what each service said during their visits and also only ask certain questions to particular groups. Odd, isn’t it? But a patient needs to know which service is handling which part of their care - for when the clinicians huddle in the hallway or in conference rooms to discuss the patients they’re caring for, the different services divvy up the work regarding the patient. For example - palliative care handles the medication schedule for relief of pain. But internal medicine will likely handle the medications related to battling infection. And oncology handles the medications related to chemotherapy and supportive care regimens. And that’s just the medications - there are diagnostic tests, procedures, discharge planning, etc. that all are handled in piece & parcel by different services.
And I should add - that is IF they huddle. Unfortunately this isn’t always the case, due to the challenge of different schedules for rounding, etc. It often falls to the patient and their family/friend support team to be the aggregator and cross-checker of the information. We would often hear a new piece of information and immediately ask the person delivering the news what their source was, who they had discussed it with, and did it change the information regarding that issue that we’d received in the past. Unfortunately many times we found that it was necessary to dismiss what we heard because it wasn’t being offered by the right clinical service and/or hadn’t been discussed with the other clinical services. So we often ended up discussing the same piece of information several times to discern whether it was valid. Add to this the fact that we are being treated at an academic facility means that there are layers of clinicians on each of the clinical services - there are medical students, residents & fellows, and then the attending physicians. You need to know who to listen to, who to tell what to, who to ask which questions of, and who you get the final word from in each circumstance.
No one should take what I write here as a condemnation of the medical profession. I have the utmost respect and admiration for what the clinical teams do on a daily basis. My career is focused on making their job easier to perform, and improving the quality of services provided to patients. But I fully acknowledge how challenging the environment of care is - for them and for patients - and offer these observations to assist other patients and families a framework to enable them to potentially better navigate the maze when they find themselves inside of it. And perhaps inspire other members of my profession to work more diligently on making it easier for patients.
Up until Thanksgiving, Julie managed her schedule of medications. For the most part this worked ok. And it gave her a measure of control over her condition/symptoms that I believe she found empowering. One of the issues that patients with advanced disease encounter is the loss of control over most, if not all, parts of their lives. It is important that they retain some semblance of control of some parts - be it cooking, caring for pets, dressing themselves, etc. It will be different for everybody. However as her condition deteriorated, her management of this aspect of her live allowed her to “hide” some of the issues she was encountering. Julie would often rest throughout the day, either sleeping due to medications or she would write and do other tasks. Then at night she would be up every 2-3 hours (on a good night) dealing with issues. I would wake for some of these - but Julie & I are very different in our sleeping habits.
- This was the case when Miles was born as well - she is a light sleeper and would wake at the slightest cry from our son. I, on the other hand, am a deep sleeper. And more than once I woke to her hitting me & yelling at me...to which I would respond “why can’t you wake me up nicely?” Her rejoinder: “I’ve been trying nice for the last 20 minutes!” I appreciate her frustration...but still think that one’s innate nature shouldn’t be held against them (grin).
Therefore Julie would be up at night and I wouldn’t be aware that she was in pain, vomiting or struggling in some other manner. And much like my above example with Miles, when I did awake I would find a situation that had progressed to the point that it was severe. I don’t know what we could have done to change this --- all I could do was continue to ask Julie to wake me up at any point so that I could assist. I wanted to be with her every step of the way - to hold her hand as she walked to the bathroom or elsewhere in the house, to help her prepare food, etc. I didn’t care how little sleep I got. But any of you that know Julie are aware that she was a fiercely independent person, so even having company (or assistance) during every minute of her ordeal was too much.
Another issue we encountered, also centered around independence, was nutritional intake. Although we procured both a medication tracking application and a calorie counter, Julie didn’t adopt them - they were too much work and I can’t blame her. She didn’t want each item tracked to the Nth degree. So it fell to my observations during clinical visits to recount whether she was eating or not. And I will observe that as her disease progressed, her perception of “normal” decreased - so that even though she thought she was eating pretty well, I would only see her eating a few bites each day. I don’t believe it’s possible to force food on anyone, but we encouraged as much as possible. One issue was that Julie abhors some of the supportive food regimes often suggested for patients - like Ensure. So she made her own smoothies, ordered raw food to be delivered, and we would try everything under the sun - foods that had been favorites for years and new things that sounded appealing, in order to increase her intake. I can’t say that we were successful. Her preferences for foods changed by the week it seemed - what was in one week was out the next. Julie tracked her weight on a daily basis - but it was a skewed measure, as the weight of the tumors & fluid presented misleading data on her true weight. Her face, chest and arms appeared more skeletal even though the chart stated she was gaining weight.
I definitely regret not taking leave from work earlier than I did. But “everything was somewhat ok” and Julie & I talked about whether or not I should stay at home vs. going to work. We both agreed that we weren’t sure what I would do all day long, so I continued the pattern of working a reduced schedule (approx. 50% - 75%), but there were definitely several weeks of 90% - 100% work. When we hit that inflection point & all hell broke loose, I told Julie that I was so very very sorry and that the guilt was hard to manage. She looked at me and told me that she had no idea it would change this fast, and that we had been in agreement all along and I shouldn’t beat myself up. But I do, and I will. So...if anyone else is facing this situation, my advice is to take time off early and get everything done you want to do. You can always go back to work...you can’t get more time with the person you love once the disease reaches a certain state in their body. I’m sure you’re sitting there saying “Duh!” to yourself...but I found that work has a way of roping you in with one more thing, one more thing, one more thing, etc. that is hard to wrest myself away from...
- Passwords - Living in our electronic culture
Julie wrote down a few of her passwords for me last week. I have no idea how many more I’ll have to figure out, work with companies to go through the details of her passing & hopefully gain access so that affairs can be settled. The first issue I encountered: no password for her voicemail on her phone. So I can’t change her message to let folks know that they should be calling me & not leaving a message for her. The only reason I’m able to post this long missive on her blog is that she setup auto-login for the site - otherwise I’d be locked out and have to go through some administrative process to gain access. Do yourself and your family a favor - write down all of your logins and passwords somewhere and let them someone know where it is. In this day and age, not having this information is equivalent to trying to navigate a house full of locked doors. Dying is hard enough, but this makes it even harder for the survivors. This is a small point, but one I that I thought it’d be worth mentioning.
3. Next Steps
As the temperatures dip here in the northeast, I admit that I am dreading this winter. When snow comes & stays, the bleak landscape will be an echo of my mental terrain. I already yearn for the budding life & color of spring to wipe my thoughts clean and renew my vigor in our earthly existence. The coming months of white scenery will be challenging. Add to that the short days & long nights - it doesn’t help that we’re already in the months of the year that I like the least (here in NH at the winter solstice the sun will rise after 7a and set shortly after 4p) - but I guess it’s a fitting time to hunker down under the covers, eat warm comfort food and be miserable for a while. So I will spend the winter & dark nights with my thoughts and start to heal. And I’ll start to create the next chapter in our lives for Miles & I. But I also plan on taking some trips with Miles to places that are sunny and warm for rest and recuperation as part of our healing process.
We decided to have a small remembrance with family members this coming weekend. Everyone who was here already decided to stay the week - so Julie’s mom & dad, brother & sister, and my mom & dad are giving their time and energy to help with the seemingly-impossible task of trying to put a little more order into place in our house...so that I don’t stare at it all for months to come and feel like I’m never going to be able to work out from under the mountain of tasks. It is never easy to figure out what items we should put away & store, or what items do we give away, or what items do we offer up to friends/family...but it is clear to me that this task in particular has to be done soon, as it will be painful to continue to wake up & see her clothes, her toothbrush...and the unfinished projects we had throughout the house and basement. I am incredibly grateful for the entire family’s love and support - and am very very glad that they didn’t leave right away. As much as family members can be a challenge to deal with from time to time, we love each other and in times like this that love is what sees you (me) through.
With the holiday’s approaching and my lack of ability/will right now to think big thoughts about a memorial service for our larger community of friends and colleagues (I will be blunt and say there is no way I could work this week or next on coordinating an event on short notice and sent out hundreds of invitations and deal with site selection, etc. I don’t have the focus, stamina or reserve to do so.), all I am saying is that we will have an event in 2012 to honor and celebrate Julie’s life. Likely in January, but we’ll see. I don’t want to have an event quickly and encounter the situation of folks’ not being able to attend because of travel plans they have the following week for Christmas, and I could really use the space/time to pull my head and heart together a bit more. And I want to do it as well as we can, y’know? I hope that everyone will understand, and it is my belief that if you have a fire burning in your heart for Julie, then it shouldn’t be diminished by a few weeks time. Let’s all get through the holi-daze and focus on coming together to memorialize Julie afterwards when we have the ability, time and capacity.
As I am unsure whether this site will still be operable in weeks to come, please email me (todd.e.vogt@gmail.com) if you would like to receive notice of the ceremony - or you can find me on Facebook (I would prefer this method).
- I rarely made time for social media sites when my life was filled with Julie and joy(and having a young child and starting a new job that was fairly demanding contributed as well). It wasn’t a tough choice: snuggle with Julie at bedtime or sink time into Facebook late at night? I always chose the former and don’t regret it for a second. But now I find it a convenient way to keep up with everyone, and I am very grateful for the outpouring of support and memories that folks have posted.
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