Kim had her second dose of chemo on July 11, 2018. She tolerated it better than her first dose, but it took a lot out of her as it was a five-hour ordeal (see previous blog post). The following day, July 12th, we made our way to Vancouver to meet with her surgeons. The hope was that after completing twelve rounds of chemo (which would bring her to December 2018) she would then be able to have surgery in early 2019. 

July 12 to 14 - these three days - over which I wrote each day to try and process what was happening to us - were three monumental and life-shifting days. The enormity and finality of what we were facing hit home for maybe the first time and with that, I would wager to say that our perspective on life and Kim's cancer was never the same afterwards.
 
WARNING: 
This week’s posts may be the rawest of anything I wrote during the summer of 2018. If you are someone who was close to Kim or myself, you may find these posts especially difficult to read, as these were three very difficult days, both emotionally and physically.
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July 12, 2018
We met with Kim’s surgeons for the first time today.  They were both very nice!  We got the information about how the surgery would go and what would be involved (we were a bit taken aback by how novel and involved it will be), but also that there is no guarantee she will be able to get the surgery. Therefore, we once again find ourselves living in a paradox. On the one hand we were given good news in terms of what they called the biology of Kim’s cancer, which is that it took two-years to show up after going into remission in 2016, and this is apparently a good thing.  Also, that fact that there were only three to four areas of cancer in Kim’s body is also a good sign as sometimes they see patients with hundreds. 

However, it turns out that if the tumors stay on the outside of Kim’s organs (as they are now) we can still go ahead with the surgery, but if they grow inside, crossing the thinnest of barriers, then for the most part, Kim will not be able to do the surgery. There is, however, in addition to this, a long list of hoops that Kim has to jump through before being considered a candidate.
 
It feels like tonight, again, we are just holding on. The cloudy weather we have been experiencing since the diagnosis and first chemo dose has now turned darker. If feels, tonight, as we talk about Kim’s mortality, that we are just barely holding on in the storm.
 
The surgeon told us that people in Kim’s situation who get the surgery are usually given have a 35% chance of living for five years. Though a little fuzzy on this, I believe that the clock on those five years started two years ago when Kim was first diagnosed and treated, therefore we are now talking about 35% chance of living for another 3 years. What do you do with that?
 
But that’s not the only thing that has sent us for a loop. We found out that we are not going to know if Kim is a candidate for surgery until the end of the year. This means almost six months of waiting, anxiety, testing, and of course chemo treatments before we even know if it is all worth it.  How much waiting can a person handle?  How much waiting is a person expected to be able to take?
 
I feel like I am gasping for air. I am grasping for someone to help, to come, to sympathize with me.  How much does a person have to take before it is okay to throw in the towel? To throw in the towel as a pastor, to hang up the Bible and just stay home; or do something else? When is enough, enough?  How much more waiting and stress can I take?  Will anyone tell me it is okay to walk away from it all? 
 
It feels like we are on a train track that we can’t get off of as the train barrels towards us.  I feel like we are pursued by this train; it is relentless as it simply plays with us, like a cat playing with a mouse, not giving us an answer on if it will finally catch us or not. Its menacing and terror-filled spotlight just continues to seek us out, shining on us, not letting us dodge or get away.
 
The bottom feels like it has dropped out. The joy, the levity, the light is gone. I can picture no future ahead, the clouds have closed in too thick, all I want to do is curl up and hide.
 
 
July 13, 2018
It felt all day like we were living with another person in the house, an unspoken and unwelcome guest, an invader. A darkness seems to exist between Kim and I, something yet to be spoken, tears yet to be cried, something yet to come.  She seems to look at me with disdain. I know it has nothing to do with me but only the anti-nausea medication wearing off with nothing to take its place. It is the frustration of forty-eight hours of chemo. The smell, the wretched feeling of being unwell, the absolute frustration and sorrow of knowing that her life will be cut short in the coming years.  These are things we still need to talk about, conversations, mumblings, groanings, unstoppable tears and absolute weakness that needs to be verbally vomited out into our home. But like knowing that vomiting will make you feel better, the act of doing so is still one you don’t want to do, and so the pressure builds. The looks and anger which we both know and feel are really just sorrow. But the lack of communication is deafening in our house and relationship right now.

But how do you start a conversation where you are going to face your mortality and deepest fear?  How do you talk about it when we are months and months away from next steps in knowing if Kim will be a candidate for surgery? How do you talk about your death when you know it hangs like a guillotine over your neck, but we have no clue when it will drop?
 
I do wonder if Kim holds some anger against me. I sit outside in the backyard as I write this at 9:10pm. Kim’s lays just above me in our bedroom with the windows open.  Does she yet resent me for now being the “healthy” one in the relationship?  Does she resent me for asking her to marrying me and coming into my Keulen web of suffering and death?  Is her sorrow going to manifest itself in anger towards me for having a better mortality outlook than she does, having more strength than she, taking care of her?  What is this life we live?
 
I went riding in the Watershed tonight and it did wonders for me, but I also feel I need to sit in silent company.  I need to have a beer with a friend where we just sit in silence, saying nothing, just sitting in sorrowful silence. To finish my drink, get up, give him a hug, shed some tears, and then simply head back home.  It sounds stupid, but for once that is all I want to do.  No talking, no advice, no affirmation, no empowering, just someone to sit with me in silence, sit still in the ashes, have a beer, get up and go home. That’s all.  But it seems such a difficult thing to ask. 
 
I won’t stay here in this house if Kim goes. This is our house, it wouldn’t be right, it would not feel right to be here alone. I don’t think Kim would want me to stay here either.  She told me she would move very quickly if I passed away. I won’t stay here if she goes. 
 
 
July 14, 2018
Today was marked by three big moments.  The first came this morning, and now I know why Kim was more upset yesterday.
 
Last night while I was biking, she was texting with Leann, and found out that one of Leann’s friends, who had the same diagnosis as Kim and was a similar age, passed away a couple days ago. Before her death, this friend had spent a number of months in hospital to try and control her pain. This scared Kim a lot.
 
During the conversation, Leann asked Kim if she would do chemo again after the surgery if the cancer came back. Kim told her no, she would throw in the towel. I think this is the first time Kim has really said that. 
 
Kim and I then talked more about her potential timeline, that if things don’t look good in September when she has her next scan, meaning the cancer has spread, that, even then, she might want to pull the plug on chemo. I think if surgery is taken off the table, Kim will have an extremely difficult time doing anymore chemo. She might just go to palliative care, especially if she has another day like she had today.

We are still dealing with the sorrow of the diagnosis, and also the news from the surgeons - that the window we have for getting the surgery is very small. I think the reality of not living a long life is really starting to sink in and become real.  Kim even wondered aloud if it matters if she lives two or four years more, especially if those four years are full of feeling like shit because she is on chemo the whole time.  But how does someone make those decisions? How do we even get through the next days, weeks and month before the next scan with all this hanging over our head? And don’t you dare f*@kin’ say to “just be patient.” This patience thing is turning out to be bucket of shit as we simply wait for one thing to then be told to wait for the next thing.
 
In addition to those discussions, today also sucked physically for Kim.  After the conversation we had about chemo and her mortality, she began feeling unwell and nauseous, so she took a prescription we had that she is supposed to be allowed to take at any time to help control the nausea.  She reacted very poorly towards it and all day was feeling worse than yesterday, and maybe even worse than the last chemo round (when she had the code-blue reaction). We are supposed to go camping tomorrow but she has not been able to lift a finger to prepare for it.  After feeling worse and worse, in mid-afternoon she took a dex (a different anti-nausea mediation) to try and counteract how she is feeling, even though she is not really supposed to take these together. A couple hours later she began feeling better but it left her feeling fatigued, going to bed at 7:45pm. 
 
The third big incident happened around 4:30pm, in the middle of these medication interactions. Kim was upstairs in bed and I settled down to watch another episode of the Ken Burns Vietnam Documentary.  As soon as I sat down I could hear Kim moving around upstairs. I thought maybe she was trying to get some steps in. About twenty-five minutes into the documentary Kim came around the corner into the family room and she was crying; she had been crying for a while. She came over to the couch, I turned off the TV with one hand while I held out my other arm for her to come to cuddle and cry on me. She melted into my chest and burst out crying even more. I had been waiting for this and expecting it and here it was. The feelings of the past three days had reached their melting point and were now coming out. This was a good thing. However, as quick as she nestled into me she shot right back up, five-seconds later dry-heaving and jumped off the couch, hand over her mouth. She ran to the bathroom with me right behind her and vomited for the first time in this whole chemo process.

We sat together on the bathroom floor, Kim crying and vomiting for about 5 minutes. After it was done, Kim cleaned her face, and with soap dripping off her chin, cracked a smile and small laugh as she looked at herself in the mirror. We went back to the couch in the living room where she told me she had been crying upstairs the whole time, not wanting me to know, but finally it became too much.
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We talked about, or more like blubbered and blurted out, how both of us are suffering for the other person.  Kim said if I were to die right now she would stop chemo and let the cancer take over. She said that she didn’t want to leave me and do this to me, trying to apologize for potentially one day making me a widower. For me, I apologized and said that I felt that if she didn’t marry me this would not have happened to her; that in marrying me she has now fallen under the Keulen family curse of poor health. I still can’t believe this would be happening to Kim if we had not been married. This stuff happens to my family, it ought not happen to her.
 
My main emotion after today is one of anger. It is anger at everyone and everything.  I’m just so sick of it all, and of having to watch Kim suffer as she does. It is weird, but the idea of hope, hope for a cure, is not even on our radar. Is that a bad thing?  Without positive hope are we doomed?  Some will say yes, some will say there is a lack of faith, but whether it is emotional or whether God is preparing us for the worst, I think we both feel this is an inevitable road; there is no way back, cancer will get her in the end.  And I think this is the blaring thing we are dealing with, looking over, learning to live with, making room for, learning how to talk about and make good decisions with.  But how do you do that?
 
I do feel like we broke through some layers today, but there are many more to go. I think, or maybe wonder, if getting away now for a couple days will help us have some of those discussions. There is still a lot under the surface for both of us. 
 
I also know that she is looking to me to be emotional, to let my feelings out.  I believe it will comfort her to see my pain, to see my sorrow, to show how much I care.  Maybe she needs to be the strong one again, maybe feeling my pain will empower her, will make her live into who she is. One who cares, one who takes charge of things.
 

In 2018, I began processing my own emotions and how life was going through the metaphor of weather patterns: Cloud Weather, Mainly Cloudy, Dark Weather, Sunny Breaks.

Though I did not date these two writings below, by their content and context I can tell I wrote the first entry just before Kim's first chemo treatment of 2018 (which I wrote about in the previous post), and the second I wrote very soon after her treatment, in early July 2018. 
Both of them speak to the intense sense of loss, foreboding and grief we were feeling after receiving Kim's second diagnosis, and the reality of another six months of chemo ahead.



Cloudy Weather 1  (June 2018, post-diagnosis, pre chemo 1)
There is a great darkness, a heavier cloud hanging over our home this time around (2018).  Maybe it is because we know what is ahead; what chemo is like, what a Port-O-Cath is and feels like. We already know what the inside of the chemo room looks and smells like and what the other faces there all look like. Kim knows what the chemo feels like inside of her, what the side effects are, what it feels like to lay down and watch useless movies and TV shows for days on end. What it feels like to feel awful. There seems a be a dark cloud hanging over our home.
 
Much of the joy seems to be sucked out.  I have always prided myself on being a joyful person; not happy, but joyful. That even in the place of uncertainty, suffering and challenge, there was always a lightness of heart within me, a joy within me.  That seems to have received a near fatal blow.  The tears come quicker and depression feels like it sits just under the surface.  We seem to be walking around the house and eating our meals with a third person. Its name is not cancer, it is not death, but it is loss. 
 
Loss of something deep. Loss of optimism, loss of joy, loss of lightness. Loss seems to stock our sitting, eat, sleeping, walking, brushing of teeth and going to work.  And I fear this new housemate will only get bigger as we seem to become smaller and smaller. As it becomes more, as it swallows up more and more of our life, we become smaller and weaker.
 
Our will to fight also seems to have vacated the premise. We have not given up, but the strength to fight just isn’t there. We eat things we shouldn’t be eating, we drink things we shouldn’t be drinking.  We are both tired of fighting already, of putting on a brave face, of sitting up straight and trying to work up the courage and strength to make the right decisions and do the right things. We just want to live a normal life experience, but that does not seem to be in the cards. So maybe, for two kids who never went through a rebellion stage in their teens, maybe this is our rebellious stage, rebelling through candy and chips and more sugar than we maybe should. Things we know aren’t healing in the fight against cancer. Rebelling against the life and loss that cancer has already inflicted upon us, and just saying, “F*ck it!”   
 
 
Cloudy Weather 2  (Early July 2018, after Kim's first chemo treatment)
How do you hold your wife in bed when she is crying and asking why God is silent, why will he not answer us?  How do you hold your wife when she is crying and muttering through the tears, choking out that she does not want to die?  How do you comfort someone when there are no words, nor any formation of words in the English language that could ever take away an ounce of the pain and foreboding she is feeling?  How do you comfort the person you love most in the world when every sound and groan and tear that wells up in their eyes only crushes your spirit more and more as you watch them suffer as they do?
 
How do you know when it’s the appropriate time to get up after you have both been crying and holding each?  How do you leave the house and go to work when your spirit is crushed, your wife is sick, and you feel so empty you just want to sit on the curb and disappear?  How do you carry the burden of comfort and support when you can’t carry any more of anything, but you know you have to because as a spouse you made vows, and you know you are the last line of defence. That you have no choice but to put that next foot in the front of the other, even though every part of you is pleading to just collapse and weep and be done with it all.
 
What do you do when you know that there is no one who understands you, when no one can grasp what you are truly feeling and wanting to say because you don’t even know yourself what you are feeling and wanting to say. How deep can loneliness go when you feel alien to your own very self?  How does life go on this way?  

 Below are a series of blog posts from my 2018 blog where I kept family and friends up to date on how things were going with Kim's chemo treatments. I share them again here as a way to set the context for some of the writing to come. 
In rereading these posts, I forgot just how bad things started out. I remember that Kim's first chemo dose in 2018 was a disaster, but my brain shut out just how traumatic it actually was. 
 

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Thursday, June 28, 2018
Chemo 1
Yesterday was Kim's first chemo treatment and things did not go well.  About 45 minutes into the first chemo drug she began to have some sort of reaction.  It started with an overall feeling of being unwell, sweating and very restless.  Then she began having problems forming some of her words.  At this point her nurse and another came over and began giving her some anti-inflammatory drugs and stopped her chemo.  These anti-inflammatory shots are supposed to act very quickly but they did nothing.  At this point Kim also starting shaking badly. 
Coincidentally her oncologist happened to be there giving Kim some regular prescriptions and she saw the whole thing happening.  Once she saw that Kim was not responding to the initial drugs they gave she told the nurse to call a code blue as she felt things were quickly escalating outside of any norm. Within seconds the code alarm went off throughout the cancer clinic and all of Surrey Memorial Hospital (Fraser Valley Cancer Clinic is in same building as SMH), and within a minute doctors, nurses and technicians came running and rolling equipment from all over the hospital...quite the scene.  At this point Kim started feeling numbness in her thighs, tingling in her feet, her right hand completely cramped up and she had problem holding her arms up as they kept slumping beside her.
Very quickly I counted 15 people standing around Kim's bed with an ER nurse and ICU doctor taking charge.  They gave her a shot of Epinephrine and after a couple minutes she slowly started to stabilize.  During this time, they wheeled two machines beside her, one an ECG, the other I don't know, and began to run those tests as well.  Her O2 states where also fluctuating so they also had to put her on oxygen.  They also moved her onto a stretcher and made arrangement to bring her down to the Emergency Department. 
Things like this are not common in the cancer clinic (her oncologist said she has never seen this before) so obviously it caused a lot of commotion and everyone was quite aware of what was happening (and you know how Kim hates being the centre of attention). 
Once stabilized on the stretcher, hooked up to O2 and saline drip, they moved her down to emerg. We got down there a little before 1pm.  She was stabilized until about 2:30pm when all the drugs started to wear off, but being in the trauma room they were quickly able to give her more anti-inflammatory drugs and steroids.  Of course, during this whole time Kim was also fighting nausea as she did still get 3/4 of her first chemo drug, and all of this left her quite exhausted. 
At about 3:30pm she stabilized again. We were moved out of the trauma room to a different observation room, where she was able to rest.  At 5:30pm the nurse called the doctor to reassess Kim. All her tests were coming back as fine and she had now been stable for 2 hours, so they let us go home, which we were more than comfortable doing. Today Kim has had a rough day, fighting nausea and an overall feeling of being unwell all day.  

So now what?  In talking with her oncologist last night and again this afternoon she says no one is willing to challenge the reaction Kim had to that chemo drug, therefore we are needing to switch her chemo medication and protocol.  As it stands right now, Kim will go back to the drug protocol she was on two years ago, plus they are going to add one more chemo drug. This means she will be on 4 chemo drugs as long as she can handle the side effects of that.  They wanted to start her next week but we called that off as yesterday has left us quite exhausted and traumatized, and so we said we would like to start in two weeks, the same time she was supposed to get her second round. 

This is obviously not an easy process and there is no inspirational message at the end of this post. This just sucks and it is hell.  

Monday, July 2, 2018
Chemo 1 Recovery
Just a quick update on how Kim is doing.  Recovery from chemo and all that happened last Wednesday has been a long and slow road.  Kim has been feeling pretty unwell and slightly nauseous all the way up to and including today.  Kim did get a good sleep last night so that is helping so far this morning. But it has been a difficult and discouraging weekend.  Kim seems to be fluctuating between nausea, being backed-up, pain in different parts of her body, and of course the regular feeling you get from being sick for a long time––there is only so much TV and sitting around you can do before even that makes you feel crappy.
We have been building a VW Bus out of Lego, so that is serving as a good distraction.  We are hoping that today is a "turning the corner day” and hopefully tomorrow can reflect some sense of normalcy. 
 
Monday, July 9, 2018
Chemo 2 Preparation 
It is amazing how fast time goes by when things are going well vs. when things are not. 
Kim has had an overall good 5-6 days.  She returned to work last Wednesday and has been able to work every day since then, including Saturday.  Kim added up her time sheet at work since her first chemo treatment and it turns out she has only had to take 1.5 sick days, which is amazing considering how poorly she was feeling.  
I should say, working this much over the past number of days has been fully her decision and she has had absolutely no pressure from her work to go back and work like this.  She has been able to work quite a bit from home on a project so that has helped a lot.  Elim, her place of work, has been so good to her.
Kim goes for chemo again on Wednesday morning.  We are feeling okay about this now but we know that tomorrow and on Wednesday morning the anxiety will begin to creep in. We don't know how the chemo will go and are a bit nervous if she could have a reaction again. She will be in the chemo chair for about 3 hours, and then comes home with the final chemo drug which infuses over 46 hours. This is the same as two years ago, but just looking at the little pouch that the chemo bottle sits in (which we still have from last time) is enough to make our stomach tighten already. 

Thursday, July 12, 2018
​Chemo 2
Kim's chemo went well yesterday.  Other than having to be there for almost 5 hours, it went well.
When we got to the cancer clinic we found out someone had made a mistake and not all her required blood work had been done, so we had to wait an hour until they could retest her blood from the day before to make sure they could go ahead. This led to more miscommunication and frustration, me raising my voice a little and showing much frustration through body language until finally an hour and 45 minutes later they hooked Kim up to her first drug. 

The first two drugs, given at the same time, take 2 hours to go in, then they gave her what is called a "push", followed by another drug which takes 20 minutes.  The "push" is a large syringe size dose of the chemo drug which they push into her I.V. line quickly, and this is the same chemo drug that she is then hooked up to right before she leaves the clinic, and this infuses over 46 hours, which she is obviously still on now.  Hopefully she will be fully able to unhook tomorrow at around lunch time.

So far the side effects seem similar to two years ago.  She is fighting some nausea and fatigue, and right away got the cold sensitivity, which is maybe the most frustrating side effect when mixed with nausea.  This means that Kim is very sensitive to anything cold, so any room temperature water needs to be heated first in the microwave, and cold air hurts to breathe (thank goodness it is summer). Later it will also affect her fingers and feet more, which the cancer clinic monitors closely as this could be long lasting if not permanent damage. Needless to say, this second round of chemo with the different drugs is going much better than the first, two weeks ago. 
The old smells and sights of the chemo bottle and hospital tape no doubt tighten Kim’s stomach and cast a bit of gloom over our home, but we are thankful that no serious reactions have happened this time. 

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.
 ​

 Part 1: Loss of Confidence
Often times with aging or any serious medical condition, it can be difficult to tell in real time when one starts to lose their abilities, or grieve things one was once able to do. When one is diagnosed with cancer or some other threatening medical condition, hindsight is always 20/20, and looking back you can often see that symptoms and the grief surrounding them were present if you only knew what to look for.
 
Often, when a diagnosis hits, such as with Kim, and life all of a sudden speeds up, you can get completely lost in the day-to-day. Trying to navigate the new stormy waters of appointments, research, treatments, sharing news with people close to you and getting yourself ready for the unknown ahead. Because of this there is very little time for introspection. You're simply in survival mode. But with the passage of time, and the need to begin to process the experience, you begin to notice all the small griefs and losses along the way; things you experienced but never fully realized or put into words at the time.  
 
I don’t know if it was THE first grief we experienced when cancer entered our lives, but close to it, was a loss of confidence in Kim’s body. What I mean by this is the ability to NOT notice all the little aches, pains, sounds or twitches that all of our bodies make throughout the day. Cancer makes you lose the ability of ignoring all of these perfectly normal aspects in living in a physical body. When things go wrong, that innocence is lost, and it is often replaced with an obsessing over every little bodily abnormality.
 
The human body is capable of incredible things. It is constantly doing things we aren’t aware of, and the regular things we are aware of, well, more often than not we don’t give them too much thought. When we are considered healthy, or without a medical history, things like wheezing or becoming short of breath is chalked up to allergies or being a little over tired. Aches in muscles or bones are given the excuses of aging or doing something we are not used to. Again, shrugged off without too much second thought. Stomach and digestive issues are given many different perfectly plausible excuses. Maybe something we ate not agreeing with us, food poisoning that will pass, eating too much or drinking a bit too much. Anything more serious is often just chalked up to IBS (irritable bowel syndrome).  And the incredibly vast majority of the time these excuses and reasons are all bang on. Cancer is on the rise and becoming more common, it is one of the reasons we feel inspired to do this fundraiser, but it is not nearly as common as all the different things we might feel in our body on a daily, weekly or monthly basis. The body is amazing, and the number of things it can absorb without too much of a second thought is astounding.
 
But when cancer became a personal diagnosis for Kim, and for myself as her husband, all of a sudden the daily and normal aches and pains, random digestion anomalies or moments of feeling short of breath all become moments of panic, things to be examined and obsessed over. Anxiety about another potential growth, wondering if the cancer cells were congregating and growing somewhere new. We had lost confidence that all the things Kim felt in her body could just be normal everyday things we all go through. There is something so blissful about ignorance.
 
When cancer entered the conversation, the innocence of ignoring or chalking things up to “that’s just what the body does” was lost, and we began to worry about everything. Everything happening within the body, but also everything happening outside the body. How much rest is too much? How much do we need to change our diet? How much should Kim be working? What does it mean when she feels this pain, or that weird sensation or pressure? All of sudden Kim forgot what it felt like to have a body without the cloud of cancer hanging over it. Hundreds of thought and concerns flittering through our minds each day as we became more and more aware of all the little things the body does, the vast majority of which are totally, organically, normal.
 
And so, there was a loss of general confidence in how her body should feel to her. We became aware, and at least in the beginning, questioning and analyzing everything with much fear and anxiety. Kim had to relearn what her body felt like. What was normal, what needed paying attention to and what could be left alone as the new normal. But the blissful ignorance of having a healthy body and not giving too much of a second thought to this or that, that reality was gone, left behind on the day we entered the cancer clinic for the first time.

​Have you ever lifted up a piece a plywood that has been laying for a period of time in a field, vacant lot, or even just your backyard? You dig the tips of your fingers underneath the wood, feeling the moist ground below the edge of the plywood, grab hold of the decaying wood, and then brace yourself for whatever you might find (organic, mold or rodent) living underneath it? Whatever is under that piece of wood, you know it won’t be pretty.
 
This is a metaphor that has been floating around my head for the better part of the last half-year as it relates to grief. I’ll admit, I didn’t know that there was some residual grief still living under the surface of my life until earlier this year, as plans for this fundraiser began coming together. But then something happened, and as usual, it began innocently enough.
 
I was on one of my post-lunch walks, working off the sugars from my meal. I was walking along one of the streets of our neighbourhood, earbuds in playing a random playlist of songs, when all of a sudden the data on my phone cut out. Wanting to continue listening, I switched over to a playlist of songs that I had downloaded on my phone, songs from about eight or more years back. As I walked along with my feet pounding the pavement and thumb scrolling through song titles, I noticed a growing lump forming in the back of my throat. I found myself scrolling through old song titles, and stopping to play snippets of music I had not listened to in quite a while. What I noticed though while I played these songs, was not so much the songs in and of themselves, but strong flashes of memory, things I had not thought of in a very long time, if ever. They were all memories related to Kim’s struggle with cancer.

On my walk, I hit play and listened to the first minutes of, Beloved, by Mumford and Sons. As the music opened, I all of a sudden remembered driving home late at night from a church council meeting, descending the hill between Langley and Cloverdale, having just shared with the church board about Kim’s final diagnosis, and my need to resign my position as pastor of the church to help care for her in her final months.
I clicked on the song, Wonderful Tonight by Eric Clapton, and I saw a scene of Kim and I one evening, me sitting at the desk in our living room listening to this song on our computer, Kim puzzling on the couch. Without looking up, she asked me to change the song because of its almost mournful tune. It was in the middle of her 2018 chemo treatment and life was very tough and uncertain at that moment and she didn’t want to hear that kind of slow music. It brought up too many “what if” emotions.
Seeing many of the faster, heavier songs on the playlist, I began having visions of listening to these songs at an almost deafening volume, both in the car leaving work to come home to a nauseous Kim a couple days after chemo, or in my earbuds biking in the Watershed, just trying to drown out the thoughts, scenarios and darkness of Kim’s diagnosis, chemo and upcoming surgery; trying to work off the anger I felt towards the cancer that was changing my wife and our marriage so quickly.
 
In thinking about this over the past couple months, and finding myself unwilling to go back to listen to those songs for fear of those emotions rising up again, what I have come to realize is it that though I think I did a fair job of working through my grief around Kim’s passing, (I did a series of blog posts on this which you can find my scrolling down a couple pages on this blog), I have done very little work in dealing with the grief of Kim’s cancer journey itself. Of seeing Kim suffer through her cancer, and the death by a thousand cuts to the life we had once envisioned for ourselves. The roll of being a caregiver to a spouse, the five-year burden seeing Kim change because of the cancer, seeing myself change because of the role I had, seeing our marriage change because of this cellular intruder. The countless suppressed emotions, the jumping to end-of-life conclusions, while at the same time denying what was happening in front of us. It all takes a toll that sometimes you don’t realize in the moment as you are just trying to hold life together, trying your hardest as the caregiver though none of it comes naturally, and seeking to put on a brave face while doing it.
 
What I have come to see, and has become apparent through the process of writing thus far in this fundraiser, is that the grief of being widowed, and the grief of watching your loved one suffer through cancer are two different things. They are related, but I have come to see that though I have worked through a lot of the pain of being widowed, I have never really come face to face with the grief of being an intimate witness to the hardship of cancer.
 
And so I find, though this was not the plan at the beginning of this fundraiser, that it is time to dig my fingers into that forgotten moist soil and lift up the plywood that I have kept overtop of the grief of having watched Kim suffer for five years, particularly the last two and a half years of her life. To see what needs to be exposed, and maybe in the process, help others on a similar journey.
 
More to come next week.

​This year, on Kim’s birthday, June 12th, Carrie and I found ourselves camping out near Vernon, outside of reliable cell service. For Carrie and I, this was our first camping trip together, and now that we are back home I can say that we got through it without killing each other.
 
Now I am not a natural camper, most of what I know about camping I learned from Kim, so naturally, I shared a lot of my wisdom, passed down from Kim, on this trip. I also spent a lot of time last Friday, June 12th, Kim’s birthday, reflecting on many Kim camping stories, which is when I wrote this post.
 
Kim loved to camp. She came by this love honestly, camping each summer as a child and teen with her parents and siblings, and in her later teens with her friends at a cabin in Orville. As single young adults, our group of friends would head out into the woods from time to time as well.
 
After my transplant, Kim and I ventured out on our first camping trip in 2011. We packed up her parents tent trailer and hit the road. Soon after this, her parents bought themselves a trailer, and Kim and her brother, Paul, took over the pop-up trailer. We spent roughly 6 summers holidaying in the old Jayco red-and-white. Sometimes the fridge would work, other times it was hopeless (at least to me, her dad always had a way to get it to fire up). It was a great time, with a lot of laughs and miles put into those small single axle wheels.
 
While Kim was recovering from her second surgery in 2019, we realized just how fragile life was going forward, and how much Kim was now being effected, due to her chemo treatments, by the cold and other environmental factors, so we decided to throw financial caution to the wind and bought our own custom made Escape Trailer. We received it in early June 2019, and hit the road.
 
Kim made that trailer her own. She put her stamp on every square inch of that trailer, customizing all the cabinets with what went where. She loved outfitting it with its own dishes, silverware and supplies, everything one might need in it to simply be able to hook up and go whenever we wanted to.
 
It was in that trailer or just outside it, while camping with Kim’s parents outside Cranbrook in summer 2020, that we got the confirmation over phone call that Kim’s cancer was back. That trip, in late July, was the last time I pulled that trailer. After spending time with her parents in Cranbrook, Kim and I backtracked to Christina Lake, our favorite place to camp, and met Tim and Heidi and their kids there for a week of camping, Kim’s final camping trip.
 
That was an emotionally awkward number of days. In many ways we knew that this final diagnosis meant, but being in Kim’s most-happy place, we didn’t want to admit or acknowledge it. We didn’t want to face or name the reality that we knew we were potentially dealing with, but we knew it within our hears to be true.
 
On our last day there, with check-out being at 11:00am, Kim and I went for an early swim. I was secretly wondering if this would be the last time we would swim together, the last time Kim would swim at all. I said nothing, trying to keep the early morning dip lite, but as we stood on the shore drying ourselves off, looking at the beautiful crystal clear water in front of us, Kim named what I already felt, saying, “I wonder if this is the last time I will see this place.” It was more than heartbreaking, if there could be such a thing.
 
And indeed, it was Kim’s final day of camping.
 
I would say that camping really was one of, it not Kim’s most favorite pastime. She loved lakes, loved to be in natural bodies of water, for just loved the peaceful atmosphere of the BC outdoors. Kim was a great camper. Lists of everything needed, everything packed and found again in its proper place. Organized and detailed. Efficient, practical. It all came back, again, to the things she valued––the people who made camping fun, the efficiency and organization of a trip well planned and executed, and the generosity that our beautiful natural surrounding have to offer.
 
It has now been six summers since Kim graced a BC Provinical Park with her camping-loving presence. But I know her camping legacy still lives on in the lives of the people closest to her. The Escape Trailer is long gone, I knew I could never camp in it again. But her supplies are littered around with her brother’s camping supplies, and as I write this, looking around the campsite that Carrie and I are relaxing in, I see as well many pieces of equipment that Kim used, or techniques of washing or storing things that she taught me. Her finger prints and legacy everywhere. I can still see the smile on her face, standing behind a camp stove, or her head bobbing as she swam in a crystal blue lake.