Enjoying Spring

Good weather helps so many things. Just the ability to get out and not have to do the whole winter production of boots, gloves, rain paints etc, sure makes a huge difference. Then, having bright warm sun…. Well, thats a major bonus.
We thought we would start by trying the lunch truck in Uptown Waterloo.

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Not too bad. But location was everything. Being able to sit out in the sun without a coat on was simply amazing!
Although the wheelchair is pretty comfortable, its mostly an indoor one so we need to get something with a little more cushion and better wheels.
She is still not feeling too well. Her back is giving her a lot of pain and her gut is still recovering from the last chemo treatment. But, we got out to enjoy the day and that helped a lot


Peeking Ahead…

We were to hear the results of the CT scan next week, but copies went to our GP, who kindly gave it to us. And the results ? Well apart from the color of the print and paper, its not black and white. On the very good news front, the mets in her lungs do not seem to be there any more!! Thats really good news! Also none of the existing nodes had gotten any bigger. The heptic duct and pancreatic swelling are still there, but no different in size. On the bad news front, it seems to have spread to her peritoneal cavity as there were evidence of Ascites. Thats potentially bad. The other confusing thing is that the radiologist (same one as before even) wrote, “a few small dense lesions in the bony pelvis are stable since the last exam”….. Ummm, what lesions?!?! There was no mention of them in the last report! If this is the case, this might be the cause of Kathleen’s awful back pain, which has been getting much, much worse again. Radiation in theory could zap that spot much like it did with the node in her neck and bring her pain relief. This would be good. The other new thing were “polyps in her maxillary antrum (Sinuses)” That could be something simple like the side effects / scaring from the Avastin…. So, what does that all mean ? Have to wait until next week. Like this crappy weather, its too grey right now. But, we are hanging onto the news about her lungs. Hopefully the rest will follow. Fights not over… Never is.
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One Year After, and Tests

It was a year ago Saturday. It was supposed to be a case of gallstones. A quick 30min procedure, 2 days of recovery and Kath would be back at work and hopefully feeling normal once again. Instead, the bottom fell out and Kathleen would be in the hospital for 37 days. Its been a tough year.

As the day approached, Kath didnt know how she wanted to mark it. “celebrate” ? Doesnt seem quite the right word. A friend of ours had many great suggestions in terms of marking it in all sorts of ways. Something over the top, something somber, something defiant ? We opted for something very pleasant at Nougat.

Fittingly it was a chemo weekend, so Kathleen along with her pain pump had her chemo bottle attached to her, went off to mark the day at Nougat. She takes it in stride. Despite having all the crap connected to her, she does her best, and it was a lovely afternoon.

So here we are one year later.
cake A reference to the old Timex commercial….

She always looks great to me.

Young and not so young around us.
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It was a really wonderful way to mark the day.

Today however, was a stressful day for Kathleen. Its that time again– time for another full CT scan to see what the cancer is up to. New sites ? What about the old sites. There is the node in her neck that was zapped with radiation, 2 in her abdomen and of course the 4 small, but defined mets in her lung and the troubling signs in her liver. Results a week from Wednesday. Stressful waiting.
Had a funny moment in imaging. The nausea was getting really bad just prior to her CT so we had to do some gravol ASAP. Kath was in the wheel chair so we couldnt go in the closet like last time. I primed the tubing, flushed her line and then looked where I could hang the gravol. Nothing…. Hmmmm, I needed something tall to hang it on

A mobile tree.


Running After Normality

It was race weekend for me. Two, back to back. A 5k in Elimra Saturday night and an 8k in Cambridge this morning. Kathleen has never been into running, although we both used to walk a boatload together. 3k in the morning with Orville and about the same at night. Then, longer hikes on the weekend. All seasons with 2 dogs. And before that when we were students, on our bikes for, well everything as we had no car back then. I would have thought running would be a natural for her, but it was never her thing. However, she would always come out to my races to cheer me on. The last few she was too ill to come, but she was determined to be there for these.
Saturday went really well for her despite having an awful sore throat. She was able to be at the start and finish line. However, for today’s race, she had to make a quick dash for the car for gravol. Almost didnt make it, and the big house people of Brant st. were wondering if she was some junkie shooting up in the passenger seat 🙂 Kath was really upset that she wasnt able to be at the finish line for me. The opposite for me. I was thrilled she was even able to come! Today’s race had some nasty hills at the end — I loved them 🙂 and all I could think of while running up for the last bit was this was a million times easier to do than the effort she had to put out just to walk up the hill to where the start line was! You can see the route here

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Combined with the pre-race trip to Nougat Bakery yesterday (Our favorite cafe), and then post race trip to the mall for some browsing, it was an almost ‘normal’ weekend for us. Hopefully with the weather getting warmer and brighter, normality will be a little closer yet.

Looking at fabric for my sister
Warming up cold hands at the start of today’s race
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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


Technical Difficulties

We missed a rather big headache by pure chance. We were at the hospital all day last Wednesday for an appointment as well as to get her PICC lines unclogged. This involves adding just the right amount of cath flow (I always think Kath flow) into each line so that the line is filled with the unclogging solution, but none gets into her system. It then has to sit an hour, and then it gets pulled out, not flushed in. If it does not work, another dose and sit for another 90min. In the past we never had to do the second round, but did this time on line #2. I guess it did a little damage to the one line because it started to leak Saturday night. The lucky part was that it was not the line the chemo bottle was attached to. If that leaked, we would have to dispose of everything the solution touched. So couch cushions, clothes, carpet, etc. A quick call to the nursing team confirmed we would have to go to emerge to get it replaced.
Its considered a surgical procedure that is highly specialized. We figured we would be there all night. However, before we left for ‘germlandia’ (aka emerge waiting room), we thought we should actually call the oncology team and speak to one of the doctors to confirm that they would actually do this. Turns out, they dont on the weekends. The person who does it (intervention radiologist) was not around. So if we did go, they would just disconnect the line and pull it out. Not good, as Kath doesnt want to lose the chemo treatment. The doctor on call just happened to be Kathleen’s main chemo doc, so a bit of further luck as he said he would try and see if he could get someone in on Sunday. But that didnt work either. So probably another full day at the hospital Monday.
Not a total bust this weekend as we made it to the Maple Syrup festival! We didnt brave the crowds on the midway as it would be a bit claustrophobic for Kath in the wheel chair. But, we did get our pancakes! We have been going many years now, so it meant something to be able to enjoy this one more time.
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Day by Day, Angela Merkel’s Purse and ‘We are all in this Together’

Its round fourteen today– round 4 of the FOLFIRI. Kath is napping post benadryl, which is one of the drugs to deal with her allergic reaction to one of the chemo drugs. Like last time, her Wednesday platelet count was too low, so repeat count again this morning. Sixty Four on Wednesday, 90 today. Good enough. Kath was hoping to do full strength chemo, but chemo doc thinks it would knock her back too much. Eighty percent again. Still, its full strength for what her body can take.
We are approaching the 1yr ‘anniversary’ of her diagnosis. April 20th, 2012. 2012, cancer year. I dont want to say a shitty year, because, well, we had some beautiful moments in there too, that despite the horrible context of cancer, I would not want to forget nor give up. Our day at Port Burwell, our 25th anniversary party, our gallium waltz. There were still some “our” moments in there and there were still some of those wonderful simple moments we loved. Coffee at Nougat on Saturdays and just enjoying each other’s company.

I am not entirely sure why I don’t think much about the anniversary. I think partly because we are so focused on living one day at a time. That’s part of the price though. When you do live day by day and in the ‘now’, you by definition have to give up the long view, both forward and I guess backward. If you look too far down the road, it becomes overwhelming.

I remember last April looking through some 2,000 emails in the duodenal cancer mailing list archive to see what might be in store for Kathleen. A woman, not much older than Kathleen, suffered through daily nausea and vomiting for some 6 months before succumbing to her disease. It was early on and vomiting was a *constant* issue for Kathleen and that was in the hospital. We didn’t have all the tools at home like IV gravol. We didn’t even know we could get IV medication at home that we could self manage. “Holy shit” I remember thinking to myself. How will she get through that ? Now we have the “club pack” of IV gravol in the fridge among other meds and we could probably start our own reality TV show, “Medical Supply Hoarders”– “You can never have enough saline flushes!” would be my tag line. We even have an ‘upstairs’ IV tree and a ‘downstairs’ IV tree. The upstairs one even has a ‘headlight’ on it so she can go to the bathroom at night. You adapt. Its in all of us actually. Adaptation that is. Some much appreciated advice I took to heart from Anne P, early on. There is more strength in us all to get through these things than we know.

I look around the chemo suite today and its the usual cross section of people. Everyone from hard scrabble construction worker with tattoo sleeves to someone who looks ready to chair the CIBC annual shareholder’s meeting, and everything in between. Everyone gets the same first class care and there is something comforting about being a part of that cross section. — Note, Kathleen gets better than first class because, well, she is Kathleen 🙂 Its not the rich people’s ward, or the ‘university educated ward’, its everyone from your community. There is something comforting about it that makes you feel a little less alone. Whatever the reason you get it or who you are, you are all there together. You draw on your own inner strength, but also on that community you are in. Thankfully, we are in a really awesome one.

Overall, this was a much better chemo round. I think the ring side judges would score it 3-0 in Kathleen’s favor. She had a great Easter with her family and via wheel chair got out to do her retail therapy at the mall with her brother Drew. As an added bonus, she finally found Angela Merkel’s orange purse at Winners which she was totally excited about. A few years ago, while at some G-8 meeting, there she was in her obligatory dower grey suite with all the other grey leaders on the BBC. But, when they got up from the table, Angela whipped out this bright orange purse that screamed a bit of defiant style, which Kathleen immediately noticed and remarked upon! So, when Kath found it trolling through Winners, she was most excited!

Four weeks from now will be the next scan. We will worry about it then and enjoy now as much as we can.

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The purse
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Chemo day