Celebration of Life

Hi Everyone,
We will be having a celebration of life party for Kathleen on Sunday, August 11th from 3pm to 5pm. It would be wonderful to come together to celebrate Kathleen’s life and legacy.

Instead of flowers, Kathleen asked that donations be made either to the KW-Humane society, or the Annette Fund at the Grand River Regional Cancer Centre.

As you know Kathleen loved and cared a great deal about her dogs and cat, as well as the welfare of animals in general.  Donations can be made at http://www.kwhumane.com/

The Annette Fund is in honour of former GRRCC employee Annette Specht – who was well known for her quiet advocacy and generosity to patients and families with emergent needs – a Fund was established in her name, to continue her good works!

When a GRRCC patient or family member has immediate needs for one-time assistance with specific items, such as: a meal (Tim Horton’s coupons/cards); a taxi, including wheelchair access (United Taxi voucher); or Hospital parking ($10 card, one time use), or a supportive medication from Health Care Pharmacy, not covered by another source.

The link that can be used is: http://www.grhf.org/en/indorgredirect

These ‘little’ costs can be very onerous for a lot of people. Kath was ‘lucky’ in that she had an amazing drug and benefits plan.  For many, this is not the case, and it can REALLY add up.

The service will be at the Erb & Good Funeral home.  You can find further information at http://www.erbgood.com/book-of-memories/1641288/McSpurren-Kathleen/service-details.php

Finally, I want to thank from the bottom of my heart all the emails, food care packages, phone calls, cards and just plain old support directed specifically to myself and Elaine.  Its been a fog for us after Kathleen died on Monday.  I have been putting pictures together to play at the service in the background, and its bitter sweet.  It brings back so many memories and makes me miss her so.  But also, I mourn the future I will never have with her. I really wanted so much more with her.  




It was hard to leave the hospital for a number of reasons. For Kathleen, tearful goodbyes for one. People she will never see again. Ever. As in the big ‘ever’. For me, it was like leaving a supportive family. There were so many young nurses who treated Kathleen as a beloved aunt, and so many older nurses who treated her like a treasured niece. And for me, just overwhelming kindness and respite. I remember coming in last Sunday morning, and the nurse who was Kathleen’s “constant” (when you have to be constantly monitored, the nurse assigned is called a “constant”) had turned down her sheets and arranged her pillows so perfectly and lovingly, I was expecting to find towel art like at one of those fancy Caribbean resorts. You know, a fresh bath towel origamied into a swan? There were a lot of tears shed. Seeing the hospital retreat away through the back portal window of the ambulance taking us home only added to the defined intensity of the moment.

I was thinking a lot about that guy from back in November who I happened to pass in the hall as he casually asked the nurse, “You called and said my wife is in a coma. Is she here or on the 6th floor.” I cant even remember what he looked like now, just the unphased tone in his voice. Its probably been a few weeks now, perhaps a month where I have become that guy. I know Kathleen is going to die soon and it no longer terrifies me like the way it used to… Same with Kathleen to a different degree.  As with each new step along the way, we acclimatized. She literally was placed into her death bed in the living room today.  We both cried, but not that much.

Twenty minutes later, we were on the side deck, enjoying the sun and having a bbq with family and a friend who Kath was roomates with last February in the hospital.  I was tired and didnt really want to do it, but Kath insisted. It took a good 15min just to transfer her out of the livingroom bed and into the wheel chair to get out to the side deck. But reflecting on it after, the BBQ was a profound reminder of what life is for me. Its finite and you must fight to live sometimes. And I dont mean hold on for the sake of holding on– struggle to make the best of whatever situation you are in. Look for light in those dark places. Make friends and relationships no matter where you are and how you are. And entertaining family and guests 20 min after being placed in your deathbed ? Thats the amazing fighter I have known and loved for almost 26 years.

Photo 2013-06-20 6 35 20 PM


Wake up, I have some crappy news for you

Kathleen is awake. Last night, after being unconscious for some 64 hours straight, she woke up. Just like that. At the time, we had no idea if she would stay awake, so I just dropped all the shitty news on her at once. As I sit here writing this, I ask her, “How would you characterize your reaction ?”… “Well, I guess somewhat stoically as I was not really surprised.” I would agree with that.

“What was it like waking up after 64hrs?”, I ask… “I had dreams several times about being woken up. I had many hands on my shoulders shaking me and saying my name many times…. Sometimes they were English and sometimes German. Ka-ta-leen…. Ka-ta-leen… Ka-ta-leen”… It sounds like these were ‘land of chocolate Germans’ as opposed to brown shirted Germans 🙂

My big worry was if she felt any pain and just could not verbalize it ? No she said. Not at all. Good.

Everyone, including the doctors are surprised at how well she looks today. A good batch of anitbiotics and 2 units of blood I guess help 🙂 The main chemo doctor had nothing new in terms of prognosis. He offered a little more clarity about the “new things going on in her lungs” in that he will review in more detail with the radiologist tomorrow to better understand the full implications and talk to us again.

Also the neurologist came by to let us know he is still working on things in the background. So as usually, lots of wheels turning on behalf of Kathleen. Really could not imagine anything more being done.

Its been a good day so far, so we will take that.



Friday Hospital Update

Its been a very hard week. Started Saturday with terrible increased pain that called for more pain meds. On Wednesday night kath developed what we would later find out to be a nasty urinary tract infection. She was offered hospitalization a few times prior in the week and each time she said no. There was not much they could do in the hospital for pain management that we were not already doing at home. Why be in pain next to strangers in a small room. Better in her own space. It was not at all the case Wednesday night / Thursday morning. Maxing out every pain med we had as well as a strong sleeping sedative did nothing. I knew at 11pm when she could not pee she would have to go. She still did not want to. She was delirious from the fever and pain and was up for 48hrs straight. In her brief moments of lucidity at around 6am she realized it was time to go, and so we did. This time via ambulance. The community nurse insisted. It was the correct choice. There is no way I could have safely driven with her in the car in her feverish state– she was grabbing and reaching for everything in her dream state. Luckily all the dreams seemed pleasant to banal with only one or two moments where she was scared.

Seeing her taken away in the ambulance hit many emotional nerves. It was a new marker of where she is now for one…. And there is something jarring in the contrast of the calm and deliberate nature of the paramedics. They are there to do their job. They are kind and respectful but not emotional about what they do. My emotions on the other hand are high and it takes a lot of effort to not fall apart. I am a full bystander suddenly to this part of Kathleen’s journey. I stand aside as they put her on a chair and safety belt her in. It was raining and cool. They had waterproof blankets. They are of course prepared. Its routine for them. So I could feel slightly less separated, I held an umbrella over Kathleen as they took her to the truck. I could not go as I had to let Orville out who was crying as strangers took Kathleen away without her normal “Guard the house Orville, I’ll be back….” as she would throw a cookie to him. Will she come back ? Of course the thought is there. How can it not.

Emerge was fast. They are surprised that with all the meds, she still in so much pain. Even unconscious and unable to respond verbally, its clear she is in a world of hurt. As she was scheduled for a CT scan next week, they decided to do it right away instead to hopefully find the cause. Blood cultures show she has a nasty bladder/UT infection and her bladder is overly full. Cipro I.V. Since there was zero possibility she could lay still, they actually put her out and had an anesthesiologist with her. The images were good quality.
Two doctors, one from Pain and Symptom, and the other, the head of in patient oncology come to see her in emerge to treat her and get the ball rolling for admitting her. An hour or so later, the emerge doctor looks at the CT images and determines going up to in patient oncology is where she needs to be…. So up we go. She has insurance so she can get a double room instead of a quad. But if the inn is full so to speak, you go where there is space. A bonus! A single room! No room-mates!

By about 4pm, her body is finally starting to twitch and spasm less. But still not lucid. Her main chemo doctor comes by to discuss the CT. Normally a man of few words, his face says it all. Even he is shocked to see Kathleen in this state. Unfortunately, they showed at least one of the tumors in her abdominal cavity growing and “something new going on in her lungs”. Kath was suspicious this was happening in the last week or two. She was getting more nausea again and her psoriasis was coming back just like it was when the FOLFOX, the first line chemo drug, stopped working. From reading up on FOLFIRI and FOLFOX, this is a common trajectory for both. It works for a while and then it doesnt in ~75% of the cases for duodenal cancer patients. The Pain and Symptom doctors think that if she were to pull through this infection, then perhaps a month in her current state.

… and then the back pain. The awful back pain. Even with enough pain meds to fell an elephant, she was still writhing in delirious agony the whole night prior to admission. Probably the bladder infection didnt help either with the generalized swelling.
Heavily sedated now and the pain meds are not quite so maxed out and she is generally resting comfortably. She hasnt been conscious for more than a few seconds of recognition since Thursday afternoon. But thats the least worse choice for now. Awake in horrific agony. Or unconscious…. b) So, can anything be done for the pain ? A radiation specialist was in to talk to us. He is willing to do what we like. The problem is, what do we do. Without a target, its just a guess as to where to zap. She has some very tiny ‘abnormalities’ in her upper spine but its probably just regular old age disc wear. But generally nerve impingement there does not translate to where she feels the pain. To put Kathleen through the radiation, its at least 10-15min on the table with about 8 ‘transfers’ to get her there. This means a lot of pain. If they guess it right, and radiation doc thinks the odds are against it, it would be 10-14 days before she might have some benefit and a full 5-6 weeks before the pain from that one part of the spine would be gone…. But there would be potentially an initial pain flare before it got better and the doctors think she has perhaps 4 weeks? More pain for unrealized gain. No.
For a pain block procedure, we have the same limitations and then some. The big one being, Kathleen would have to be awake to let the doc know where the pain is and when it stops. Thats not possible.
Another thought the neurologist has is But thats treated with chemotherapy. There is no way Kath can tolerate that either and she is no longer responding to the systemic treatment.

We talked about what Kath would want done when things came to this stage. Its not like we worked out a large decision tree of every scenario in detail, but enough that I dont worry too much about making mortal decisions on her behalf. The staff here were great about encouraging us to talk about end of life decisions months ago and we did for the most part. We might have procrastinated a bit, but I think all is relatively clear. The doctors are pretty sure she will pull through the infection by Monday. The nurses I poll are mixed. Some dont think she will, some say too early to tell. In the mean time we wait.

Kathleen knows nothing yet of the latest scan. It will be hard to tell her… Will I be able to tell her ?

A friend sent me this link to a rather timely article

I like the poem in it.

10pm. Time to go home for the night. Someone is in the room with her constantly as she could do damage to herself. The people here are really, really, really amazing, so Elaine and I dont worry leaving at night. We can stay if need be, but we are not at that stage quite yet.



After about 20min of waiting, I knew that this time they would actually find a blood clot. Kath has had swelling in her legs quite a few times in the past year, but each ultrasound came clean. 10-15 min was all it would normally take down in Imaging. Another new drug now. Even the hospital pharmacist had a “now what” look on his face when I went in with the tell tale white slip of prescription paper. Great pharmacist who is really into what he does. Fragmin. Appropriate name for something to deal with clot busting.
The danger with the clot in her leg is of course it could move into her lungs or elsewhere which would be fatal if not treated very quickly. But with her platelets dangerously low, she has various bleed concerns. When the doctor came in to see us, I had the “No, she is not being admitted speech ready.” I think he knew it would not wash, but the price to pay is we have to go in for daily blood tests for the next few days and wait around for the results. OK. A deal. Oddly enough, it wont effect chemo on Friday. If her platelets are high enough, she can do it. They were 46 today. They have to be 75 or better for Friday. We will see. They did bounce back from the 50s last time, but never this low.
Her pain is not getting any better. Yesterday, we had a RMT come in to see if that could help anything. Perhaps a little, but he warned she might feel a little more pain in the short term. It was a pretty bad night for her.
All in all, quite discouraging. Sometimes I look at her as she sleeps in her chair next to our bed, I dont know how she gets through it. Its a comfortable chair, but its still a chair. To me, it seems like sleeping in an airplane seat for 180 days. Add in the pain, and the cancer and the side effects of the cancer, its been pretty shit for her. The odd bright spot. Last Friday for example was a relatively ok day. We were able to go out to Zhers and a few other errands. We also had a nice birthday cake with Elaine and then yesterday a nice meal out with her Uncle Merv and cousins Chesea and Lisa. But those bright spots seem to be fewer and shorter than ever. Not really looking too far down the road. Just taking one day, sometimes one hour at a time.

Birthday Cake with Elaine
Photo 2013-05-27 6 58 51 PM

Birthday With Merv, Chelsea and Lisa, Jan and Elaine
Photo 2013-06-04 7 40 57 PM

Fun emails (cute animal pics from Bonnie)
fun emails

A bit of ‘photo booth’ last week at the hospital. Still get to kiss my sweetie



Its been a tough two weeks for Kathleen. More pain meds… New pain meds… New doses of pain meds. Pain Crisis… Common word, pain. She pretty well has to use the wheel chair full time as standing or walking around is too painful and just wipes her out.

She did have one amazing night out on the previous Wednesday. Kathleen is part of a local service club (Zonta International). She joined it a few years ago because she wanted to give back to her community, but not just locally as she liked the international aspect of it as well. She also respected very much the way the work was done and how dedicated and committed the women were. When she got sick last year, she had to give up her participation with the group, but the group certainly did not give up on her. Throughout, the women of Zonta have continued to reach out to Kathleen and its been such a sustained source of support for both of us. All the phone calls, visits, flowers, cards, emails, blog comments add up to such a foundation of support. So, it was an emotional night for her, to say the least, when she attended her first meeting since her initial diagnosis.

It seems the pain free moments are fewer and fewer for her and there have been some awful moments. Her primary pain med is via sub cue and it tends to get blown faster than it should. When that happens, the pain meds just accumulate in the tissue un-absorbed and she gets in a world of pain like Wed night. Changed the site. Fixed for now.

I haven’t been posting too much lately. In some ways, “nothing new to say.” Things are just hard. Our friend Jan is here still and that is an indescribably huge help. But she does not have the magic cancer-be-gone wand either. So its more of the same for Kathleen.

Chemo day today and back to the chemo cave. It almost didn’t happen as her platelet count was 58 yesterday. Had to re-do the test today. 76. 75 is the cut off and even that is a pushed value. Its hard to look for the light in the cave. But the love and support that our friends and families give us certainly are a huge help in finding those moments. ‘Thank you’ seems so inadequate, but thank you.

Some pics from the last 14 days.

In front of the Apple Tree

Enjoying the hot weather on the long weekend

Photo 2013-05-18 1 42 38 PM
Wonderful brunch with Jan, Elaine, Bonnie and Don

Photo 2013-05-23 12 23 54 PMShoes of love 🙂

qbay-001Visting in Q-Bay on Chemo Day


Hammer Time

As in after “Break Time”, not the parachute pants wearing MC. (Yes, age specific allusion). Time to hammer her system with chemo once again. She is anxious to get back as she feels she has made gains against the cancer sites with the last CT report. Although Kathleen does not regret taking a week off, she doesn’t want to delay any more. Its a difficult decision to make. You have to balance off between killing your whole body with toxic chemicals and giving it all a break. But you cant be selective about what gets the break and what gets the toxic soup. The cancer cells also get a chance to regroup with time off.

Its been a bit of tough week for Kathleen on the pain front. It has not been under control really. We had a meeting with “Team Pain” yesterday. They really are quite earnest in their efforts to help Kathleen try and control her pain and symptoms. The doctor we meet with takes great care to explain to us the reasoning behind his plan of action. I appreciate how he takes the time to make his case to us where some doctors might say, “take these pills, see you next time”, he takes the time to elaborate his thought process in great detail as compared to some doctors we have dealt with. But, the limits of science and medicine are the limits and they can only do so much. Plus, its treating the symptoms, not the elusive cause. She has been on a new pain med, lyrica. Hard to tell if its working. Its not solving the issue of course, but you cant tell if it would be worse without it. Unless we had a control Kathleen (a double entendre there– ‘control’ and ‘kathleen’), we cant tell how effective it is. Its quite possible she would not be able to function without it, or it makes no difference at all. Hard to say.


You can see from the pic she is pretty tired, but the amazing dinner and desert Jan and Elaine made really cheered her up. Sleep has been hard to come by for her at night. A series of unfortunate events as well has kept her up. Two nights ago, a neighbor’s car alarm kept going off through the night. I went out to check, the poor guy was in his housecoat trying to pull various wires without luck. Add some early morning emergency gravols for nasty cramps and near vomiting and it has made for a long week for both of us.

So here we are again, in “Q” bay.
Photo 2013-05-10 2 56 43 PM
You can see the effects of the lyrica and the new type of subcue ports on her arm with the bruising. More side effects to the side effects to consider.

And now back in the chemo cave with her guardian cat


Break Time

Couldnt do the chemo today. Platelets were too low and Kath still has not recovered from the previous cycle. The doctor actually was going to allow her to go ahead as it was borderline, but she chose not to. I think it was a good idea. The back pain is still out of control…. Bloody nose, sporadic fever for the last 2 days… Way too much going on to get beat back again with the FOLFIRI into the chemo cave. Will try again next week after she hopefully can recover from the previous cycle.


We had to wait around a few hrs for cathflo to unclog her PICC line again today. (Its funny, I always hear it as Kath flow). So nice to be out in the sun. We are lucky to have our friend Jan with us again


Frequent flyer club (Collect them all Kids)

Well, back in the imaging department again. I think she now has a complete collection of every medical image possible. Like all the other wards we have been through, wonderfully kind and attentive people as well.
Originally they had scheduled Kathleen’s PICC line to get fixed on Wednesday, but her main chemo doc said no, ASAP. So it’s now, not tomorrow. My sense is that if he had a time machine he would make it yesterday.
Dealing with mortal issues are hard enough on their own. Having worries such as “how will I pay for my meds”, “Can I afford the treatment”, and, “am I getting the best treatment I can reasonably get”, are worries we do not have. They would just make everything that much worse. Having main chemo guy personally call and make things happen… Well, that just makes you feel special 🙂
So, here I am yet again in the hallway from “hanging in”. It’s end of day so the hallway is quiet. Just the people who they are squeezing in like Kathleen. But all i hear is that familiar building hum. I am not really worried about the PICC replacement, but it’s technically a surgical procedure and there is some worry that with her line being in for such a long time might mean there is scarring and it will be tricky to remove. Added to the fact that it was just a year ago when gallstones turned into worst case scenario against the odds…. Well, there is always a bit of worry 😦


X-ray on… So they are working on her.10 min in. Hopefully her back is not too bad.

20 min in. Normally a 25-30 min procedure.
And done! It worked! Small issue around a valve in her chest but nothing big!
Issue resolved, trouble ticket closed


Home Again!

It was a busy weekend. The pain is under enough control that the doctors felt comfortable to let us try and manage from home. Almost 20 days this time. Again, have to mention the amazing staff. Way more than just professional, but incredibly kind and caring. It makes such a difference when you leave at night knowing they really care as human beings and will do everything possible to make Kathleen comfortable as possible.

So, what was the cause of the back problems and infection ? They suspect probably mostly an impinged nerve. What was impinging it ? Good question. We had a meeting with the radiation doc and he said generally they need a target to blast. Only once had they done radiation of the spine without seeing an actual tumor– but there were many, many other factors to suggest cancer there. Kath is on some Lance Armstrong strength steroids, and that might have reduced the inflammation enough to help her back pain. She stops taking them tomorrow so we will see how things go.

In the mean time, I am sitting here in my living room next to Kathleen who is sleeping. Her IV meds finished for the night, some saline drip running slowly to keep the line from running dry. Its so good to have her home with me Photo 2013-03-11 11 06 30 PM


Hard Effort, Hard Day, Hard Results

She really did try with all her might, but the pain was just too much to lay on her back. She was incredibly brave. Not fearless. Brave. Bravery is not the absence of fear. Bravery is pushing forward despite every fibre in your body telling you don’t. Pushing through the tears, to the point where she started to throw up. They didn’t manage the pain meds quite as well as they did for the MRI, but I think her pain issues are worse than they were. At this point, even if she didn’t have cancer, sitting and sleeping in a chair for 2 weeks is going to cause problems on their own. The gallium is in her system until tomorrow so they are going to give it another try in the AM and hopefully better time the pain meds. Kathleen really wants to push forward with another round of chemo but they are waiting on the gallium scan 😦

The afternoon was particularly hard. They up’d her one drug to the point where she became unresponsive and was drifting dangerously close to being in a coma. They were readying the shot of adrenaline when we were finally able to get her to open her eyes. It was a tad stressful to understate things.

Second attempt tomorrow morning. She is already getting anxious.


Team Effort

Really, when I think I have seen it all in terms of level of care and support, the staff at Grand River Hospital one up themselves. It seemed like half of the hospital was involved to help get Kathleen through her MRI. Nurses, techs, Radiologists, pharmacists, doctors. They got as much pain relief and sedition as safely possible, timed it all as perfectly as possible… Sent additional staff down into the MRI lab to inject more pain meds half way through– all so they could get an image and hopefully get to the bottom of what is causing the pain. If a tumor, irradiate it. If infection (discitus), treat it with specific antibiotics. If physical, they said they would even get an orthopedic surgeon to look at finding temporary pain relief. Wow. Thats all I can say. And of course, delivered with the utmost compassion, care and kindness. I would love to mention everyone’s names, but for privacy reasons I wont here.

And wow! is all I can say to all the emails, pics, videos and cards people have sent. They really do help get us through this difficult road. Each email, note, pic, video, when added to all the other emails, pics, videos and cards combine to a very warming foundation of support. Thank you from the bottom of our hearts for that. It really brings us a smile that we have such a wonderful community around us. I will include this one particular pic from her service club which I think is ok to post here. zonta

After all that, a very generous and sweet stylist came and cut Kathleen’s hair, Jess/Jenn. Interesting story around her name.

On the medical front, Kathleen is technically considered to have pneumonia as there is fluid in her lungs right now. Having so much pain medication pushed into her, and then the attending saline to flush the meds, has caused her to accumulate a great deal of fluid throughout her body. Third spacing its called. (I think she is on ‘forth’ if there is such a thing.) She describes her legs as elephant trunks. She refused to allow me to take a picture, so here is an artist’s conception approximating how they look.


As you can see, they are quite large! I still love em. But I think she needs some moisturizer. More meds to deal with it slowly and gently. No results from the MRI yet. We will hopefully get something tomorrow. In the mean time, the pain is definitely down from its high point which is great. But its still to the point where she can only walk a few steps. It was a physically and emotionally exhausting day for her, but its one in the win column… on many fronts.