We have hit 85% of our fundraising goal!!!!
 
This is so incredibly humbling and amazing. Thank you to every single person who has given.
 
Thank you to those who gave in the first months, to help kick off this event and provide that early momentum and support for our vision in Kim’s memory.
 
Thank you to those who gave during the slower summer months, some who gave a second time to help keep the momentum going and to help our numbers to keep gaining ground when it looked like we had stalled out.
 
And thank you to those who have given recently. Many donors who have recently given are people we don’t know, but people who have caught onto Kim’s story, people who wanted to be part of what we are trying to do in the Surrey/Fraser Valley community, to help bring these two new PET/CT Scanners to the area.
 
THANK YOU TO EVERYONE WHO HAS HELPED US GET THIS FAR.
 
Of course, we are not stopping, and we still have a couple months before the end of the year. There are still a couple things we and others are working on as we speak, and so yes, this is only the FIRST of a couple BIG announcements we hope to be rolling out in the next month. So, please stay tuned.

Proximate Living
July 28, 2018
One day after chemo disconnect (48 hrs after chemo clinic)
She moves about the house with caution, seemingly deliberate with every step, making sure no sudden move sets off an instant surge of nausea.  She holds herself tight and stiff, knowing that any distraction or surprise lurking around the corner could set off an urge of heave.  It is as if she walks with dynamite...slowly, deliberately, protecting herself.

Her smile is gone, only a crack of one when I do something stupid or funny; she is low. Her concentration on trying not to think about anything is intense and focused. She will be reading or laying down and then in an instant shoot up, book beside her, eyes focused directly onto the table in front of her as she slows her gag-reflux, gains control of her mind and anxiety, and brings her stomach back into order, focusing on something, anything, to take away the urge to vomit.  
 
This is new territory for us. Kim has felt nauseous before, felt horribly unwell before, but this instant nausea that creeps up out of nowhere and threatens to ruin the moment is new.  Of course, we have heard of people suffering this way, but we hoped it would bypass us.  Two weeks ago, any distracting thought would bring on tears and sadness, but not it’s nausea.  And for the moment at least, there is nothing we can do about it, except to wait it out. And so here we are again in our married lives, waiting.  Waiting the chemo out; waiting the nausea out. Waiting our lives out. 

Both Kim and I could be characterized as people of purpose.  Sure, we love our days of doing nothing, of sitting, reading, puzzling and watching too much Netflix, but one or two days of this and enough is enough, we get restless. We need to return back to the purposeful world around us.
But now it seems that one out of every two weeks is filled with nothing but waiting.  Sitting in our house, trying to read, trying to puzzle, trying to follow the plot of a movie. All of this to simply distract us from the fact we are simply waiting. Waiting for the chemo to pass from Kim’s body, waiting for enough time, nutrients, and fluids to pass so that the toxicity in her body comes down, so she no longer walks the tight rope of vomiting and not vomiting. Waiting so that we can get back to some semblance of the life we once knew, but which we both know we won’t ever fully get back to. For we feel that the life that awaits us after this is one of half-measures.  Going to work but feeling like shit. Going for walks but moving slowly. Eating food but doing so not out of enjoyment or hunger, but because it will only make her feel worse if she doesn’t. There are hints of normalcy, glimmers of joy or smiles, but it all take place in the context of suffering, of darkness.
 
I was recently reading a book, Visions of Vocations, which speaks to this kind of idea. The author, Steven Garber, though writing about a different context, calls it “proximate living.” He asks, in looking fully into the world’s suffering, what then is our responsibility towards it? How do we move forward into it? And one of his answers he gives is learning to be comfortable in the “proximate.” True, unadulterated happiness, joy and hope are gone from our home right now, everything is qualified by the C&C words (cancer or chemo), but we are finding, as we oscillate through the different stages of grief, a kind of “proximate existence and happiness.” 
 
We find this in the little joys and summer experiences. It’s there in our spot at Centennial Beach, eating dinner by ourselves or with friends on the beach.  It is the joy of the good days, of going to bed and having pillow talk.  It is in the annoyance I have with Kim when she all of a sudden wakes in the morning with a bit of energy and is out the door to work, leaving me to clean up the week of chemo-dread around the house. The bundle of energy she is when she gets home, pouring out everything that happened at work and all the funny stories she missed over the week she was gone.
 
And right now, when we do get that “proximate happiness,” it is wonderful, because for many in our world, that is all they ever get. As Garber writes, “Proximate happiness is worthy of our deepest longings.” The proximate is worthy of our deepest longing because this is our reality, and there is no use pining away for something else. This pain right now in our home, this murkiness, though not fun, is the place we need to live out of. We can’t just wait for something better. And so, we do live as best we can, with the proximate, in the waiting. Proximate hope in the idea of a cure or remission. Proximate faith in the God who feels silent and absent. Proximate peace as time goes on and we become more comfortable again in the deep unknown and ever shifting symptoms and side-effects. And proximate joy in the small things; dinner at the beach, a funny movie, a longing look, a half-laugh, and days when she can work and go out with friends.     

Kim's third chemo treatment in the summer of 2018 marked a bit of a turning point in how she went about receiving chemo. Her body was tired, as were her nerves. The side effects began getting worse, and so more measures needed to be taken to help with getting the chemo in and dealing with its effects. As we navigated both of these changes, I took to my keyboard to outline this transition in real time. This will be the first of two posts this week dealing with this transitional week in the summer of 2018.

Friday, July 27, 2018
Like everything with cancer and chemo, Kim's third round has already had its share of up and downs. Everything started out good (other than the fact I forgot my transplant drugs and had to drive back home to get them).  Kim's blood work was all good so they started right on time.  However, about 45 minutes into her chemo she started feeling unwell.  This can be normal, however, with Kim's history this report of feeling unwell and some of the symptoms she had set off a bit of a chain reaction with nurses, myself, and Kim becoming very concerned, which then sent Kim into an anxiety attack (though we didn't know it at the time). 
The nurses stopped Kim's chemo and called the doctor who prescribed some Benadryl, thinking this was maybe a reaction again.  This made Kim more lightheaded and a bit groggy.  After about 45 minutes and not much change we decided to try some Ativan as at this point Kim was getting more and more frustrated and anxious as we had to decide what to do, and she was having a very difficult time describing how she was feeling. 
However, very quickly after getting the Ativan she began to feel better and was able to rest comfortably.  The nurses started her chemo slowly and over the course of 30 minutes had it going back up to full speed.  It was about a two-hour delay so we were again at the clinic for about five-and-a-half hours.
 
What this really points to is just how multifaceted the issues around cancer and chemo are.  We are both feeling very fragile and I am sure I could use some Ativan from time to time as well. 
On the upside, with all the Benadryl and Ativan that Kim got, when we got home she was able to rest really well, and other than getting up for some dinner she pretty much snoozed and slept from 5pm until 6am the following morning.  This morning she is feeling nauseous and dry-heaved already, so we know we are not out of the woods yet.  Kim did get an extension on her anti-nausea medication so we are hoping that helps.  

As the summer draws to an end, and we welcome a new season and pace to life, I thought I would take a moment to draw out some highlights from our summer as it relates to our fundraising efforts in Kim’s memory, to help bring two PET/CT Scanners to the new BC Cancer Centre in Cloverdale.
 
The summer kicked off with a bang. At the end of June, which marked 1/3rd of our way into the fundraiser, we hit the 1/3rd mark of our fundraising goal! With a last-minute appeal and donation, we hit $250,000 with matching donations, exactly where we were hoping to be when we kicked things off in April.
 
July proved to be a quiet month, but we were so incredibly grateful for the money that trickled in, that people took time to donate and continue reading my blog, even during a time when minds and activities were turned to the lighter things of life, like vacations, kids and summer fun.
 
During the summer, and which I will continue to do going forward, I changed the focus of my blogging to share some writing I had done in the midst of Kim’s cancer journey, especially during her chemo treatments of 2018. Some of these writings and experiences were very dark and difficult to return to, but I wanted to share them to show the struggle of the day-to-day in the midst of the cancer battle, and to maybe help others who are currently living through this difficult reality. I understand these writings might not be for everyone, but if you’d like to read them, you can find them below by scrolling through my blog posts.
 
In mid-August, we had a very special event, one I had been looking forward to since our April kickoff. On August 19, we held a fundraising awareness and story-telling evening at Elim Village in Surrey, where Kim worked. This was an intimate gathering of about 25 former and current staff members who knew and worked closely with Kim. It was a special time where I was able to share the vision for the fundraiser, and where Kim’s friends from Elim were able to share  memories and stories of Kim, some of which were new and surprising to me and Kim’s parents, who were also in attendance. It was a very special time. Carrie and I are so grateful to Elim for hosting this event, and Amanda in particular from bringing it all together.
 
Finally, we finished off our summer on Aug. 26th with another special event. Carrie and I were invited onto the site of the new Surrey Hospital and BC Cancer Centre in Cloverdale for a special presentation, and a perimeter walkabout of the new building. We gathered, along with other fundraisers and stakeholders, to hear about the progress of the building (it is exactly half way done, projected completion in Aug. 2029). We heard about all the new technology and innovation going into this building, including the seamless interaction between the Cancer Centre, imaging, and hospital, along with complete real time home monitoring from the hospital. It was a powerful experience to walk around the outside of the building, and to see where the PET machines will be installed, and where the cyclotron (the machine that creates to radioactive isotopes, which are needed during a PET Scan) will be located.
It was great to be there, and to see exactly where all your donations will be going, and to hear from the builders themselves of how state-of-the-art this will all be, and how much of a difference it is going to make in Fraser Valley region.
 
As we now look to the fall, the pace has all of a sudden really picked up. We, and others in our community have been quietly at work all summer, and those efforts are going to be having some big effects very soon, and we can’t wait to share them with you!
 
So please stay tuned as some big announcements, as well as stories about Kim and the fundraiser will be rolling out soon.
 
Thank you again for all those who have donated thus far, and for those who are still thinking of donating by the end of the year. I am incredibly humbled by your willingness to give, and to ensure that Kim’s memory and legacy continues on, helping people in a practical way.

As the summer of 2018 proceeded along, Kim and I were both working through some of the stages of grief. I can admit now that we were probably living in denial for quite awhile, but as my previous blog posts illustrated, we had popped that balloon in early July. Nearing the end of the month then, we, and especially Kim, had moved to the next stage: anger. 

July 19, 2018
So often in life we search for cause and effect; we want a reason as to why things are happening to us. This default way of thinking and living is no doubt precipitated by our modern worldview that everything can be known and everything that happens has some precondition based on something else. 
 
Kim, being a very logical thinker, a middle child, someone who values fairness, and bookkeeper & staff accountant by trade, is someone who needs both sides of the ledger to equal out at the end of the day.  For Kim, struggling with such a serious diagnosis, and feeling so unwell because of the chemo, is very hard to digest, because there is no cause she can point to which leads to the horrific effects she feels.  The cause she wants to know is absent, but the effects are acutely felt.
 
I understand, or try to understand, what Kim is going through in her need to find the cause of what she is feeling and why she is feeling it. I have known the challenge of living with health challenges ever since I can remember, so I am able to let go a little easier than Kim of trying to find the reason behind each pain or unwell feeling. I do wonder what it would be like to be living a normal life for over three decades, and then to all of a sudden to be faced with this new reality. A reality where life has become incredibly small, where regular living seems impossible, and there is a total loss of control over the things happening to her. For the first time in her life, Kim is trying to wrestle with the reality that there simply is no cause for what she is feeling, other than the words, cancer and chemo.
 
For myself, having grown up with CF there was an easing into my suffering, like slowly entering the cold water. As I grew I become acclimatized to my sufferings and challenges. I do not know what it is like to be healthy one month and then feeling like you are at death’s door the next. This is why I find it so difficult to understand what she is going through in her search for the cause.
 
All of this does lead to a lot of frustration and anger for Kim. In terms of the stages of grief, Kim is most likely in the stage of anger.  We are not in denial. Over the past month, any sense of denial we had, which in all honesty reaching back to 2016, has now been dispelled.  There is maybe some slight depression, but mostly anger is where we are at. Again, how do you deal with something that just comes and strikes you down in the middle of life, but before striking you down, makes you suffer more than you ever wanted to. We are angry. Angry at cancer. Incredible angry at the chemo; angry at the side effects; angry knowing that if we had not gone to see the doctor in May, Kim would be feeling fine, even though the cancer would be growing in her body. Sometimes ignorance is bliss, especially when this is the alternative. For now, anger is our partner.

Just a quick note to say I have not been able to get my blog post together yet for this week. I hope to have it up on Thursday or Friday.
Sorry for the delay, and I appreciate your patience. 
​Thanks. 

The summer and fall of 2018 were defined by varied swings in how Kim was feeling, and in what emotional weather we found ourselves in. We would swing from mainly cloudy, to dark weather, to all of sudden within a couple of hours, feeling some sunny breaks. We were grateful for the breaks in the clouds that hung over our life those six months, and we sought to make the most out of the breaks that we had.

July 16, 2018
Kim had chemo last Wednesday and she was still feeling pretty ill this morning. We decided, already last week, that we were not going to go camping. We asked Kim’s Dad come and pick up the trailer so we didn’t have to look at it anymore, as it was just another reminder of the limitations placed on our life right now.  Kim spent quite a bit of time puzzling today, but after lunch started turning a corner.  She took a Dex, and at around 3pm started feeling more like her normal self.  We decided in the late afternoon to give the stay-cation thing a go, so we drove to Tsawwassen to get some Nando’s Chicken and have a picnic dinner at Centennial Beach. We sat on the beach for a little over an hour, eating our dinner and people-watching. On the way home we picked up some DQ ice-cream.  It was nice to feel somewhat normal again, taking in the beauty of creation together.
 

July 17, 2018
We woke up thinking we might make it a beach day today, but Kim was not really feeling it in the morning.  She didn’t want to take the idea off the table, but also knew that things were not yet right. We ended up hanging around the house most of the day, and went for a walk around the neighbourhood and Watershed.  Kim set up dinner reservations at the Washington Avenue Grill with her friends Shanna and Amanda, and though it was incredibly hot, it was a good evening. It was good for Kim to see her friends, feel a bit back to normal, get caught up on all the work gossip, and be distracted by the lives and stories of her friends.  I think a person can only take so much of themselves, especially when not feeling well, so it is good to hear about other people’s lives, especially people you care about.
 
 
July 18, 2018
Well we did it, we got to the beach! Today was, of course, the worst weather of the week, cloudy with some sunny breaks throughout the day, but it was a great day!
We packed some food and drove out to Cultus Lake to have lunch on the beach. It was a little disappointing that there was almost no one else there, so the opportunities for people-watching were pretty slim, but it was good to get out. We then went to Tap-Ins to play a round of putting-green golf which was a lot of fun, with Kim winning by four strokes. We took the backroads back through Abbotsford, stopping in to have coffee my uncle, aunt, and cousin.  It was really refreshing to see and chat with them.
Though Kim's body is feeling strong, there is, however, still an emotional cloud hanging around.  Having coffee with family, sitting on the beach, seeing Kim’s friends last night, driving to Cultus, the cloud seems to follow us.  Even when there are sunny breaks, the clouds are still in the sky.  I do wonder if we will even return to full sunny days, or will the clouds of life always be there, casting their shadows? We get “glimpses” of the “warmth of sun”––joy and happiness in our day––until a stray memory or thought (cloud) meanders over and casts its shadow once again, reminding us of what our reality is, what it is that is living inside of Kim, and what it is that her treatment is trying to do, obliterating everything in its path.  The cloud is there, always casting its cooling questions over the limited things we can actually get out and do: Will we do this again? What will next time look like?  
It seems that this time around, unlike 2026, we aren’t able to let those questions go, to turn them off, to ignore them and just get on with life.  The weight is always there; there is always a cloud in the sky, even when it  feels sunny and warm. 

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.
​
 
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.
​
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.