Superfluous Matter
How I Feel

A lot of people ask how I'm doing. I generally say "OK" or grunt noncommittally. I'm not really OK ever at all, but it's normally too tiring to get into it. That doesn't mean people shouldn't ask or that I don't want to talk about it. Just that their timing is normally wrong.

I've come across a community on the Internet for young widows/widowers (a word I am soooooo not comfortable with) and one of the more active members wrote a very good description of what many people in my situation feel. I figured rather than ramble on myself I'd just repost it below. I agree with basically all of it.

Unique and Devastating Loss

With the death of our spouse, we grieve the loss of so much more than someone we merely loved or were close to, like a parent, grandparent, sibling, friend or pet. We grieve instead the loss of: The one we loved most deeply, cherished and felt the very closest to. The one we swore commitment to in that unique human bond of marriage, which many consider sacred. The one we shared the ultimate partnership with to live as one and perhaps bear children with. The one who embodied our true sense of home. The one who was our best friend and who was to be our companion for life. The one we confided in, depended on and trusted most. The one who really knew, understood and accepted us as we were. The one we felt safe and protected with. The one we shared private moments and intimate feelings with. The one we mated souls with.

But it is not just that this most precious person has been torn from our life, as unbearably heartbreaking as that alone is. With the death of our spouse, and only of our spouse, many additional profound losses must be grieved as well. For we also suffer: The loss of who we ourselves were while with them. The loss of the couple we were once half of. The loss of the life partnership we once formed. The loss of the husband or wife role we once embraced. The loss of the life we once lived. The loss of the plans we once made. The loss of the dreams we once shared. The loss of the future we once envisioned.

Amidst all this, we are also suddenly confronted with many hardships we never expected to face at this point in our life. Besides financial survival, increased domestic burdens and perhaps single parenting, additional challenges less apparent to others but all too real and terrifying to us. We must now find it within ourselves: To create a new identity. To redefine our role in life. To establish a new connection to the world. To build a new network of social relationships. To discover a new sense of purpose. To formulate a new set of goals. To decide on a new direction for our future.

And we must accomplish these without dishonoring our former life, but while suppressing bittersweet memories of that life, so that they not hold us back. Memories of happier times mostly, but also those of our spouse's death, either sudden and shocking or after prolonged illness. We must further endure the feelings of guilt and disloyalty that follow us as we attempt to forget and move forward, but with our heartstrings tied so tightly to the past.

And all these tasks must be taken on at the lowest possible point of our life in the worst state imaginable. When we are the weakest, most vulnerable, most insecure, most isolated, most heartbroken and most emotionally exhausted we have ever been. Without that one person we long ago became accustomed to relying on to help get us through life's greatest challenges. The one who, just by being there, would have provided us emotional comfort and moral support to draw upon, as well as the strength and confidence we need to complete those tasks and so much more. But now we face all this alone.

Profound indeed is the death of our spouse. Unique and devastating. For nearly all of us, much more catastrophic to our life than the loss of any other. And truly comparable, many of us widows and widowers often feel, to one other death only. Ours.

Thanks

I just wanted to say thank you to the hundreds and hundreds of people who came out to either the visitation or the funeral to express their condolences. It really means a lot. The video from the funeral is available online.

Not sure if I'll blog much more for a while so for now I'll leave any readers with some of my favourite photos of Kim. Click on any photo for the full resolution version, suitable for printing.

At Peace

Last night, September 21st around 7:15pm, my wife and best friend gently passed away while I sat by her side. Words cannot express how much I loved her; Kim was beautiful, selfless, and brave. She made me laugh and any time I spent with her was time I cherished. People talk about a hole in your heart when a loved one dies. For me the hole seems to be located just in front of my body, where she would fit so perfectly when we hugged. It's just so empty now.

Services will be held at Haskett's Funeral Home in Lucan, Ontario. Visitation Friday, funeral Saturday. Please contact the funeral home for more details.

In lieu of flowers, Kim requested that donations be made to the Canadian Cancer Society or the Oncology Department at St. Michael's Hospital in Toronto. As an alternative, she requested that you can also take the time to give blood.

The obituary has been posted.

My wife and best friend, Kim
My wife and best friend, Kim
Update

Kim has not been doing so well in the last few days. She's having trouble with lots of different things and the doctor does not expect she'll be able to leave the hospital again or that there is very much time left. We are out of treatment options and untreated the cancer is moving very quickly.

Kim has asked me to communicate her love to everyone, but requests at this time that no one come to visit or try to call her. She is not up to seeing visitors beyond myself and her immediate family. Please understand, she has enough to deal with at the moment without having to try to hold polite conversations with any arbitrary person. Kim is also not really replying to email/Facebook at the moment.

If you would like to pass a message or something on to her, contact myself and I will try to take care of it. Some of her former coworkers made an album of silly pictures of themselves for her and she was definitely amused.

Kim is getting excellent care here in the hospital. Many of the nurses have become like friends and they are upset too.

Thanks to everyone who has helped out in little ways over the past couple weeks and those who may yet help out in the future.

Update

Just a quick update. Kim is still in the hospital. They've determined that the cause of the fever is not an infection but instead a symptom of the continued growth and progression of the cancer. The DHAP and Methotrexate only slowed the growth temporarily. As with all the other treatments we've tried the cancer has adapted and is no longer responding to the drugs. The doctor suspects that the cancer has moved into Kim's bone marrow but we won't be doing any tests for that since it doesn't make a difference to treatment either way.

At this point we are switching to a palliative approach. The idea is no longer to target the cancer but instead to just try to treat the symptoms as they come up. For now that means trying to get the fevers under control. We're not sure when Kim can home yet.

The last couple weeks have been really hard. I find myself rarely knowing what to do.

Blood

Kim's fever is persisting so she is still in the hospital. Tylenol keeps it from being too bothersome, but it doesn't seem to want to go away. They've done many more blood tests looking for infection and have yet to find anything. Kim has only seen the on-call doctor thus far as her normal doctor is away for the long weekend, so I suspect we'll learn more tomorrow when her normal doctor returns.

Additionally Kim's hemoglobin was super low today so she had to get three units of blood. Pretty crazy but hopefully it should improve her energy levels. I spent the day with her at the hospital watching Doctor Who and Torchwood and had a yummy takeout supper from Amaya in the shiny new Eaton's Centre food court.

Anyone looking for an easy way to help out can go donate blood. It's amazing how much can be used during the treatment of cancer. Kim's been lucky so far and hasn't needed much, but some of the people she's met undergoing similar treatments need blood multiple times a week! Personally I always pictured trauma victims and surgery patients using donated blood but never thought of cancer patients. Apparently cancer patients are the biggest user of blood products.

Tomorrow I'll probably drag my big work laptop to the hospital and work from her room so that I can be there when the doctor comes to visit. Kim's sister is also around this week to sit with Kim while I sleep or whatever.

Recent Happenings

The last week or so has been pretty busy/crazy. Kim had a lumbar puncture last Friday and the procedure itself was more painful/crappy than usual. One of the possible side effects of lumbar punctures is extreme, migraine-style headaches due to leaking cerebro-spinal fluid when the hole from the puncture doesn't seal up properly right away. The CSF cushions the brain and even tiny imbalances can cause nasty headaches. Anyway, the difficult LP has caused Kim to have headaches ever since. Additionally she has been suffering low blood counts (platelets, hemoglobin and white blood cells) and had to have a couple platelet transfusions.

There is a procedure called a blood patch which can be used to fix the leak caused by the LP and make the headaches go away. However, for a variety of reasons, it isn't appropriate to pursue in Kim's case. The leak will resolve itself in time, we just have to wait.

Anyway, by Thursday it looked like we had figured out the right combination of medicine to manage the headache pain and Kim was feeling pretty good. Unfortunately on Friday night she started running a fever and we had to take her into the ER (anytime her temperature goes above 38C we have to take her in, just to be safe). By the time we got to the ER her temperature was already dropping as she had taken some Tylenol before we left. We stayed at the ER for eight hours while they monitored her and ran some tests to look for infection. Nothing was found so the sent us home.

After a long sleep we woke Saturday morning to find her temperature was back up and so we returned to the ER. Once again her temperature dropped as a result of Tylenol but this time they admitted Kim to watch her overnight. Her temperature predictably rose above 38C as night fell and the Tylenol wore off so they're keeping her while they run more extensive tests to try to figure out what's happening. Fortunately they can control the fever with Tylenol pretty easily so she's not too uncomfortable.

This week Kim is also scheduled to get a CT scan to check the progress of the DHAP treatment so hopefully we can still get that done. I'm pretty tired.

Home

Kim came home yesterday and things have been going well. She'll probably get a lumbar puncture again next week, then some more scans and then we'll see what's next. The doctor continues to be pleased and impressed with how well Kim handles the chemotherapy treatments.

Today we made chili for supper which is always good and generates lots of yummy freezer leftovers.

Next

Sorry for the lack of updates lately, nothing really conclusive has been happening. Kim's been getting her lumbar punctures and is pretty tired from it all but otherwise mostly OK. She's had some back pain again along with some neuropathy in her arms but the doctor prescribed some low dose morphine and that combined with a hot magic bag seems to be helping.

She had a CT scan last Friday to check the progress of the DHAP and it does appear to be working to reduce the size of the tumours in her lungs to some extent. So, she is going to be admitted to the hospital tomorrow to begin her second round.

This past weekend Kim and I went to John's house for Rib-o-rama XI and it was lots of fun. Great weather and great food and I had a chance to catch up with a few people I hadn't seen in a while. We also went to Chris and John's to play Ticket to Ride with them+Rob (although Kim had a nap instead).

All Done

Kim was released today from the hospital from her first round of DHAP. It went pretty well but she's really really tired. I suspect she'll sleep the next few days. Additionally she's getting two lumbar punctures a week to put chemotherapy directly into her spine. While she was in the hospital she got another MRI so we'll probably get some results from that this week.

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