This blog post is a little different. From time to time, or maybe quite often, I would like to begin sharing some of my unpublished writings from back in 2018. These writings served more like a journal than anything else, a way for me to vent my own anger, frustrations and griefs while Kim was going through her second bought of chemo. They served to help me make sense of what I was feeling as I process my experiences and emotions best through writing.
 
Up until last year, I had never returned to nor reread any of these documents, so they are very raw. I have edited them only for grammar, style, and to try iron some sentences out to make them more clear, rather than the verbal vomit they were back when I first wrote them.
 
My hope in sharing these is that they can give others a bit more of a peek into the reality of living alongside someone with stage 4 cancer, the emotional battle of being a caregiver, and again, as with all my writing, I hope they can serve as a companion for anyone who might be experiencing a similar situation, or similar feelings but in a different context.
 
Unless I am on holidays or extra busy with work (like last week) I hope to publish on my blog once a week.
 Peace be with you.
 
Aug. 9, 2018
Yesterday while Kim was in the chemo chair, an interesting and understandable (at least to me) event happened.  It was the hottest day of the year thus far and even in driving to the clinic I could see people’s tempers were on a hair-trigger.  People were driving with an edge and you could tell there was not a lot of patience in the general public. It makes me wonder how many more accidents there are on the hottest days of the year than when we have temperate weather.
It didn’t help our mood or the mood of anyone at the chemo clinic that the staff were also run off their feet, and by the time we got there at 1:45pm, they were already a good 25 minutes behind schedule.  In being walked to Kim’s chair the nurse was already apologizing for being so busy and it was clear this was no throwaway line; it was uncomfortably busy when we got to our pod of chemo-chairs. 
Things for us went fine, and within a totally acceptable time-frame, all our questions and concerns about pre-meds were answered and Kim was hooked up.  This is when I overheard a conversation that caused me to reflect.
 
It was now 2:40pm and I overheard our nurse talking to another nurse asking if she could take her 2:30pm patient as she was so busy she had yet to even look over his bloodwork or do any prep for him.  I looked at my watch and noted this man would have now been sitting in the warm waiting area for probably 15 minutes, knowing he would still be there for another 10 minutes before any nurse would come out and get him.  Having just experienced this situation ourselves I already felt for him.
Then minutes later a third nurse came into the pod asking if the patient had been brought in as she couldn’t find him in the waiting area.  It had now been 25 minutes since his appointment time and the third nurse who went to bring him in started checking everywhere.  She walked to the coffee bar and checked the bathrooms a couple times over the next 10 minutes.  Finally, 40 minutes after what would have been his appointment time, and having placed a phone call to him, they discovered that he had simply left, walked out of the cancer clinic without getting his treatment or telling anyone.  Apparently, as the gossip went, this was not unique for this person.  The interesting thing for me, however, was the total surprise and incomprehension of the nurses over this man walking out.
Now there was nothing wrong or offensive in the nurse’s reaction.  They did not say anything disparaging, but just accepted that this is what the patient did and unfortunately, he would need to wait a couple days before they could book him in again. They were really just left questioning why someone would ever do this.
 
For me, I understood.  I have been in this person’s place many times, waiting, waiting, waiting, and becoming more and more frustrated as you wait some more.  Kim and I had been feeling this way just an hour earlier, but unlike this person, I let out my frustration by swearing under my breath, looking at my watch, and commiserating with other people in the waiting area.
However, what I believe this man was exercising was the smallest amount of agency and control he felt he had left in life.  I am guessing he had simply had enough. Tired and frustrated from the chemo and the way it made him feel and the time it took up in his life; tired of feeling a total loss of agency within himself to influence what was happening to him, and feeling no control each time he came to the clinic, this was the one way he was able to make his voice and power heard, as misplaced and inconsequential to anyone he thought he might be standing up to. He was a person who was potentially feeling disempowered for days, week, even months on end, and now with nerves running short, time being stretched and waiting too long in a hot room for chemo he didn’t want and which was most likely going to make him feel even more miserable than he already was, he excised his last bit of agency and power and walked away.
 
Was it a rational decision?  No.  Was it the right decision? He felt it was in the moment.  In the end what he did will end up taking more time than if he had waited a couple more minutes for the nurses. But for him in his anger there was a release, a statement of power; his voice was heard. What he did, in my mind, was understandable, and was the natural outpouring a man who felt disempowered. 
 
I am guessing, because I see it in myself and I understand what this person did, what he was feeling was a lot of resentment. Resentment to so many things he doesn’t know where it started, but it is now firing off like a shot gun in many different directions, hitting everything in sight. Thomas Merton, a Cistercian monk who died in 1968, writes about the need to get rid of resentment:
 
“The most difficult and the most necessary of renunciations: to give up resentment.  This is almost impossible, for without resentment modern life would probably cease to be human at all.  Resentment enables us to survive the absurdity of existence in a modern city.  It is the last-ditch stand of freedom in the midst of confusion.  The confusion is inescapable, but at least we can refuse to accept it, we can say, ‘No.’  We can live in a state of mute protest.  But if resentment is a devise which enables man to survive, it does not enable him, necessarily, to survive healthily.  It is not a real exercise of freedom … Driven too far it becomes a mental sickness.”
 
Resentment, I am almost certain, is what this person was feeling, resentment towards life, towards his cancer, and now towards the people who were not able to stay on schedule.  I feel this because I see it in myself.  So much of my own anger is not so much anger as it is resentment towards life, and our current life situation.  Acting on resentment feels like a freedom (albeit, a false freedom), as for a moment it breaks us free from the captivity and negative feelings we may be feeling against what we think is our oppressor.  No doubt this man was exercising in the fiercest “mute protest” against something that he didn’t even want (chemo) to treat and illness which was trying to kill him. 
My hope for this person is that he felt some freedom and empowerment in what he did, that it was a release and he can let the resentment and hate go. For in the end these feelings and turmoil will only serve to do him harm, for they can never end in freedom, but only in the resentment and irrational things it makes us do becoming its own oppression.  It is again, as Merton writes elsewhere, “Strong and happy hate does not realize that like all hate, it destroys and consumes the self that hates, and not the object that is hated.  Hate in any form is self-destructive.”

Kim’s cancer diagnosis, like many different kinds of health challenges, instigated two opposite experiences at the same time. On the one hand it brought us closer together as a married couple, but on the other hand it drove a wedge between our shared experience of life together.
 
There is something about an existential crisis that can drive people together. This began already early on in our marriage with my own health struggles. We spent countless evenings together in my small hospital room just sitting, waiting for my transplant. I became totally reliant on her for everything in life, and she in turn leaned into that intimacy. We were each other’s team, the ones who knew and experienced the truth of every moment we suffered through. And the same then happened during Kim’s cancer journey, although the roles were reversed. I became her champion, her voice, her support. I sought to watch out for her, support her and serve her in all the ways she needed, just as she had done for me (although I’ll admit she did it much better than I did. We always joked, I made the better patient, she the better caregiver). But the challenge brought us closer together. So many times, in the thick of the challenge, we just wanted to be alone, together.
 
At the same time, her diagnosis drove a wedge of experience between us. As much as we had now both played the respective rolls of caregiver and patient, we also became aware of the way that the patient and the caregiver experience the challenges differently. Each has their own journey, their own challenges.
 As caregiver, though you are an intimate witness to everything happening, you are also not able to fully enter the cancer experience itself. I have my own story of the horror of Kim’s chemo treatments, her surgery and recoveries, but I was not the one in the chair receiving the poison, not the one on the table being cut. For me, the diagnosis did not end in death. I never had to imagine my own death or what life would be like for my loved ones afterwards. This was her cross to bear, and hers alone. I had my own struggles and cross to bear, but they were different.
 
And so, though in some ways the sickness brought us closer, it also drove up apart in that it set us on separate journeys, cut us off from each other in some very real and intimate ways. I tried as best I could to help carry the weight of her diagnosis and to be there in any way I could. I tried to help lift by listening, and providing presence by simply sitting next to her. The weight of burden she was under was crushing. But while she suffered, I was becoming more and more aware of my relatively  good health, strength and ability. In a strange way, the sicker she got, the stronger I felt. We were going in opposite directions. Kim’s cancer in some ways shut us off from each other, we lost something of each other through the different experiences we had of it. And as she got mortally sick, in the end, the cancer pulled us fully apart, with the gulf of death between us. When she breathed her last, I continued breathing. As her heart stopped, mine beat on, with each beat now moving me further and further away from her, from our life together.
 
On the one hand, her journey brought an intimacy deeper than we had ever experienced, an intimacy deeper than friendship or love. It was an intimacy of being, forged in suffering and sickness. On the other hand, it set us on opposing paths, one of death, one of continued life.

We had incredible moments of joy and fun over the five years that Kim lived with cancer, and often times it was not in the forefront of our mind and we could live “normally.” But also, we could never fully forget. It was accounted for in most major decisions during those years, even when she was in remission; it set the tone for long seasons of life, and it gave us roles and journeys neither of us wanted to have.
 
  
 

Part 3: Sureness to our Planning 
I recently read a book by Luci Shaw, a poet and former professor at Regent College. She published a book that was a collection of journal entries she made during her husband’s cancer journey, and her subsequently becoming a widow (God in the Dark, 1989). In it, I came across a line that resonated with my own experience, and that gave words to a reality Kim and I lived with for a long time in my own health struggles, but which was intensified in the five years of her cancer struggle. The line she writes is near the end of the book, after her husband has passed and she is planning to move. The line is innocent enough, but spoke to something so important in life; Shaw wrote, “There is finally a sense of sureness to our planning” (253).
 
There is no good time for cancer to strike, but for Kim and I, it felt like it hit at an especially cruel time.
 
Kim and I had a very...unique...thirteen years of marriage. It was a time of constant transition, a marriage in which we always seemed to be dealing with some unknown thing in our life, a lack of sureness in our planning. Within three months of getting married I began the medical work up for a double lung transplant. Six months after our wedding day I was waitlisted for said transplant. I spent the next year-and-a-half on the waitlist, knowing that the call for my life saving transplant could come in 10 seconds, or it may never come at all. When the transplant did come in June 2010, we spent an amazing year watching my body recover, gaining a new strength I hadn’t had in years. Following my recovery, we decided that we wanted to start a family, and thus beginning a two-year fertility journey, ending each time with hope turning to heartbreak.
 
This brought us to 2014, six years into marriage. I was heavy into my master’s degree and Kim was thinking about her own career. It was a transitional time again as we grappled with the reality that we would not be having children, but it was also a time of incredible peace as we came to terms with this new vision for our life.
 
In 2015 we were finally falling into something of a regular rhythm of life. We felt, maybe for the first time in our marriage that there was “finally a sense of sureness to our planning.” We had made peace with our decision to end our fertility journey, my health was stable, and Kim had come to really enjoy her place of work, the role she had there, and her colleagues. She was happy with where life had led her. I was on a sure path to finishing my Masters of Divinity in spring 2016, a year of ordination schooling following that, with a call to the ministry being the next step. We felt we could finally look ahead. “Sureness to our planning.”
 
It was then that cancer came into our life, and all plans, any sense of sureness of what we thought life might look was thrown out the window. The day-dreaming and sureness evaporated in a single diagnosis.
 
Every plan, every dream now came with an asterisk; that asterisk being, "if Kim feels well enough, if she don’t have chemo that day, if the side effects aren’t bad, if the cancer hasn’t come back, if...if...if." There was a cloud hanging over every dream about the future, every plan made for a month or year ahead, even for next week, or in some cases, plans made for tomorrow, or even, that very afternoon. All sense of sureness was thrown out the window. How Kim felt could often change in a matter of minutes.
 
The TV show, Ted Lasso, popularized an old English saying, “it’s the hope that kills you.” Meaning that when we hope for something, when we look to the future, when we make plans, we open ourselves up to the hurt and disappointment of those plans not succeeding or coming to fruition. It is the same idea that whenever we open ourselves up to love, we open ourselves up to hurt and grief. Refusing to hope, to look to the future or make plans for fear of the hurt that could be caused by them not turning out is a very common thing for people who have experienced trauma. To shut down or to live in fear of things not going well is easy protection. Hope can kill our spirit. But a different phrase from the same episode of Ted Lasso, which is often forgotten, is one that I think is healthier and truer, “it’s the lack of hope that kills.”
 
Kim and I took a very pragmatic view of her cancer diagnosis and the road we knew she was on. From the very beginning in June 2016, after her first appointment with the oncologist and subsequent PET Scan, we knew she was in for a difficult chronic fight. This was something that was most likely not going to just disappear, and if she did go into remission, most likely the cancer would not stay that way forever.  A sureness to future plans was suspended, and we knew it would be suspended and asterisked, most likely, forever. And so, we grieved that. We grieved that the hope we had for the future, plans we made for camping, or for warm weather winter holidays, or continued work or seeing nieces and nephews grow up, always had to be balanced with the very real unknown.
 
After her chemo treatment ended at the end of 2016, and her subsequent scan in early 2017 showed no cancer, people wanted to celebrate that her cancer was gone. We went along with it, but we had lost the ability to have a sense of sureness to our celebrating. We had hope, and we never lost hope, but we couldn’t celebrate with true gladness. Our philosophy was never to lose our sense of hope and planning for the future, but to remain realistic that nothing was sure. To not allow our highs to get too high, and thus our lows to get too low.  
 
The word, “cancer,” has what I would say is a very long “follow-through.” I think even for people whose diagnosis isn’t as serious as Kim’s, the word and diagnosis of cancer casts a long shadow over life. Ever after the “all clear” from cancer, I have talked to people who still years later still live under the shadow, the fear of each yearly scan or bloodwork.
 
Nothing in life is certain. I am sure everyone who reads this can point to many examples in their own life of the sense of sureness in their planning that did not come to fruition, and that potentially left them crushed or disorientated in life. For Kim and I, we had come to learn to live in this unknown because of my health struggles, but her cancer diagnosis, and the intensity to her treatment brought that into much more focus. It was something we experienced as a grief, a frustration, but we never really articulated it, as most don’t. It was a just frustrating reality we had to live into.
 
If there is one through-line that these last three blog posts have pointed to, it maybe has to do with an overall loss of safety, or better put, of control in our life. In order to flourish in life, to grow and live a good life, we need a sense of control, a home base, a sense of agency to life. We have to have some notion of self-confidence and safety (that we are ok), and sense of hope, that we can imagine some sort of peace and control in our future. Without that sense of control or agency, life becomes shaky, unfocused, unstable. It is exhausting always to be feeling under threat.
 
Those five years, and especially the final couple months of Kim’s life were difficult, exhausting and stressful. But they were also years when much fun was had. There were still so many laughs and good moments. Many successes, much peace, much love, and a lot of hope still existed. As part of my own journey, I need to lay out the difficulty and losses of Kim’s cancer journey, to get it out, process it, and in doing that, maybe come alongside other’s in their own life journey. But in laying out the dark times, please don’t get the wrong impression. Life was still beautiful, and even in Kim’s final weeks, there were still windows of beauty, peace and still much hope for a final and eternal future.
I look forward to continue sharing more about this balance between the difficulties, griefs and losses we experienced, and the will and struggle to regain agency, hope and sureness throughout it all.
 
If you are reading these blog posts as they come out, I will away from my keyboard for a little while. I hope to post again in two weeks time.
​Thanks for reading!

Part 2: Loss of Safety
The second subconscious loss was related to the first, but also slightly different, and that was the loss of simply feeling safe in her body.  Like maybe most cancer patients, Kim became aware that there was something deceiving, devious in her body. Her body was naturally producing something that was unnatural, that was wrong. Something that, if not treated, was seeking to kill her. The enemy was within; the call was coming from inside the house.  It felt like her body was no longer a safe place.
 
But in addition to this, it was not just that her own body was trying to attack and kill itself, but in order to try and stop this, to restore safety back to her body, she was going to have to willingly inflict violence on her body–surgery–and willingly poison herself–chemo–to try and get rid of this innate intruder. The natural flow of how the body was created was being reversed on her. Usually, infections inflict themselves on the body from the outside. They get in and then it is the body’s natural homegrown immune system that seeks to fight it off. With cancer, it was developing through the mutations of what once were normal cells on the inside. And then to kill these naturally reproducing mutated cancer cells, she was now needing outside help. Violence and poison from the outside to kill what was happening within. The body created to protect her, to give her everything she needed to live in this beautiful and at the same time threatening world, was in itself now carrying the very danger it sought to protect itself from. There was no fight or flight from this danger. Her body itself was the point of danger.
 
Cancer takes so much from us, so many small griefs inflicted along the way that it is impossible to deal with them in real time. Maybe they register in the brain in a passing moment of lament, but for the most part, when the diagnosis is as serious, and comes on with as much speed and immediacy as Kim’s did, there was no time to stop and grieve them one by one, which was probably a good thing. But all the early, little losses that cancer inflicts on life, they all accumulate over time to make a difference, to erase a comfort, erase a sense of safety and sureness you once had. Of course, these losses all pale in comparison to the existential threat that cancer presents, a fight often between life and death. Yet, all of these little losses, though not always acknowledged or put into words, are all experienced and bring with them their own lament and grief.
 
Kim lost the capacity to allow her body simply be her body, for it to move and adjust and heal itself in its usual subconscious way. She lost the safety and homeness one should be able to feel in their own skin.
 ​