The Cancer Chronicles: Weeks 8 – 11

Wow, 4 weeks without an update. This one’s a doozy.

WEEK 8

Things started out just fine, Friday’s radiation was normal, we had a fairly quiet weekend. But by Monday she was feeling pretty run down and we were starting to worry about her (lack of) fluid intake, so we met up with Carolyn, her Nurse Practitioner, who topper her up with an IV. That helped for a while, but by Tuesday evening she was feeling poorly again, and a fever showed up Wednesday morning. Protocols dictate that anything below 38 degrees is nothing to worry about, but by mid-morning it has spiked to 38.3 – time for some action.

We went straight to the cancer centre and they wasted no time hooking her up to an IV and pumping a litre of saline into her. Blood was drawn for standard work and to cultivate some cultures, and by mid-afternoon she was on IV antibiotics. It was now becoming increasingly obvious that they would admit her to the ward on the 5th floor – and the policy was that she would have to be fever-free for 48 hours before release. Given that she was still feverish so late in the day, a Friday discharge seemed unlikely (I’ve since learned that they don’t discharge on Fridays at all) so we were looking at Monday at the very earliest. I’d been sending texts out to various family members and had just received work from her Mom on Mayne Island – she was on her way.

Around 5PM she was moved up to the ward – in a temporary room until hers was ready – and various doctors and nurses came by to assess the situation and reassure us as to what was going on. Then Josie showed up and decided that she’d spend the night in the room with Siobhan and I went home to try and sleep.

WEEK 9

Thursday morning I was back to take over, and she looked much improved. Still not much of an appetite, but the small kitchen they have there was pulling out all the stops to find her something she liked. Radiation went off without a hitch and later in the day Doctor Cooper came in and said that yes, her blood cultures had bloomed and she was positive for a bacteria in her blood stream. They hadn’t narrowed down which one yet (we later found out it was pseudomonas) but this would mean 7 days of IV antibiotics (currently the broad-spectrum imipenem). By the time evening rolled around, things were looking up. Moods were improving, there was general perkiness. It seemed like a corner had been turned. I went home to get some sleep (ha!) and Josie took over the night shift.

By the time I got back Friday morning things had gone downhill. Overnight the fever had climbed, nausea came back with a vengeance and, well, other symptoms. This wasn’t the recovery we were hoping for. We took her down for her radiation treatment, but then skipped the weekly consult with Doctor Wu – back to bed and a nap. By the end of the day her medical oncologist Doctor Knowling, her radiation oncologist Doctor Wu, her Nurse Practitioner Carolyn, and the weekend on-call doctor had all stopped by and talked about how everyone was working hard to identify what was going on and that while hers was an extreme case, there was nothing happening that was beyond the norm. As Doctor Knowling said, she was an “interesting case” – not really something you want to hear from an oncologist.

Saturday started out fairly routine, I relieved Josie and spent the better part of the morning with her, the left to get some lunch and take care of some errands. Heading back, I checked in to see if anything was needed and all was good, but when I arrived, this was on her door:

Contact Precautions

Contact Precautions

Turns out they found another bacteria strain. And this was was fairly resistant and we would have to make sure it didn’t spread to other patients on the ward because they all have, to one degree or another, compromised immune systems. Clostridium difficile was the culprit this time, which meant putting her on flagyl and it also meant that all her visitors would have to wear gloves and gowns. At this point it was decided that I should take the night shifts (because of C. Diff no one else could use her bathroom, so it would be easier for me to be there at night) and Josie and Sarah and Nym would divvy up the day-shifts.

This was the case over the weekend, but on Monday it was decided that she should be moved to the Acute Treatment Area at VGH (the Cancer Centre and VGH are connected via an underground tunnel) as they could provide better care for a case like hers. So we packed up her stuff and trundled off to the real hospital. They had a private room waiting for her (10th floor, spectacular view) and a medical team ready to go. So more antibiotics and that evening down for a CT scan to see if they could find out where all this bacteria was coming from.

The scan revealed colitis, not unusual where C. Diff is involved, but nothing else untoward. The rest of the week was quickly becoming routine, antibiotics, fevers, nausea, doctors, nurses. On Wednesday night she’d had enough of her hair coming out in clumps, and told me to get some clippers the next day.

WEEK 10

Josie gave her a pixie cut in the afternoon, and that evening I showed up with clippers and finished the job.

Friday morning started out like some many others recently, but not long before I left she said she had a “funny, serious” question to ask. Yes, shortly before 7 AM on November the 14th, after being together for almost 13 years, Siobhan finally proposed. We’re going to get married in June of 2015.

Other than wedding planning, the rest of the week was much of the same. Tuesday night was another CT scan which showed that the colitis was responding nicely to the drugs. But while this was an abdominal scan, it included the lower portion of the lungs. And there were spots in her lungs. We were reassured that there was no way this could be either cancer nor TB, but this did mean another CT scan that would focus on the lungs to try and get a better look at what was going on. And it was late this week that it was decided she needed a feeding tube (specifically, a PEG tube). On Wednesday she was put on further restrictions – in addition to gloves and gown, we would now have to wear a mask in her room, to avoid the possibility of air borne infections.

Who was that masked man?

Who was that masked man?

WEEK 11

Before the PEG tube, she had an NG tube inserted. This was essential for the PEG insertion. By now we had the results of the chest CT scan, and those pictures warranted a bronchoscopy so they could get a close look at what was going on in the lungs and take some samples for cultivation.

The bronc was performed on Monday morning and by late in the day, they’d determined that it was definitely a fungus and put her on an anti-fungal IV immediately. Within a day there was a noticeable improvement. Fevers were reduced, she was markedly perkier. But most tellingly, she was getting bored. Nothing says getting better like being pissed off at being in the hospital. Things are looking up, and we’re optimistic again.

Month in Review – October 2014

Way better than last month. Not great, barely into the “good” range, but still way better.

My numbers are still low – except my weight – but I’m looking to start ramping up in November. And, of course, a race report.

The aforementioned RnR was my only race this month, and I was pacing, not racing, but I have the Moustache Miler on the 22nd so that should be all kinds of fun. And, at 5k, a few kinds of pain too.

The numbers:

Distance: 226k
Time: 21 hours
Calories: 14k
Climbing: 1800m
Weight: 191.4 (UGH!!)

New Feature: My October heatmap!

Race Report – Rock’n’Roll Vancouver Half Marathon

When I heard that the Rock’n’Roll half was having pace bunnies, and that the bunnies were sponsoured by the Running Room, I knew I had to get me a piece of that action. I contacted the volunteer coordinator about 6 weeks before the race and that was it, I was in as the 2:00 pacer.

I’d previously donned the pink ears about a year ago for the now-defunct Surrey International Music Marathon and really enjoyed it, so I was looking forward to a fun time with, hopefully, a bigger crowd.

It poured rain all day Saturday and well into the evening, but Sunday dawned bright and clear. Ideal racing weather. I ran down to the start-line, drawing a few double-takes as I passed through down town. “I’m working on my Playboy Playmate costume for Hallowe’en” I told one bemused onlooker.

The start-line was abuzz with excitement – and thanks to the totally awesome Lilian, I had access to the Brooks Running VIP washrooms (“Potty Like A Rock Star“) which were way deluxe. Waiting around to start, there were lots of people who were happy to see that there were pacers, and fortunately there was two of us doing 2:00, and the other pacer, Trevor, was going to run straight through, while I was doing 10-and-1s, so runners had a lot of options.

Then they sang the anthem and we started shuffling forward as corrals were starting at about 1 minute intervals. As we’re waiting at the start-line, one woman commented on the unfortunate music choice – something by Justin Bieber. Not really the Rock’n’Roll atmosphere she was expecting, I guess.

Thanks to Jan Heuninck for the great photo!

Thanks to Jan Heuninck for the great photo!

And we were off! The first few kilometres are through Gastown and the Downtown Eastside, before crossing the Dunsmuir viaduct, skirting Yaletown and heading out to Stanley Park. Then along the north side of Lost Lagoon, before ducking through the underpass and heading up Pipeline Road. Then it was back onto Stanley Park Drive, past Lumberman’s Arch and Prospect Point, past the Rowing Club and around the final bend to Devonian Park. I crossed the finish line at 1:59:14, right where I wanted to be and, funnily enough, my slowest half marathon ever.

Official Results:  1:59:14 – Overall 2013 out of 6349; 1121st male out of 2266; 159 out of 309 in my AG

The Cancer Chronicles: Week 7

The whole cancer story.

IT STARTS

All the waiting was leading up to Monday. Siobhan’s Mom arrived on Sunday and, anticipating a big day, we all retired early.

We arrived at the Cancer Centre around 8;30 Monday morning, went up to the 5th floor and checked in to the little hospital ward. Then it was back down to the lab on 3 so she could have her blood drawn.

Shortly after we got back up to her room her nurse, Phillip, showed up and took her vitals and, eventually, got an IV line into her. Then Dr Cooper (not at all like Coop from Nurse Jackie) stopped by and laid out the day’s game plan. Once her blood work came back, and assuming all was good with it, they’d start pumping fluids into her via the IV and once that was done they’d hook up the chemo bag. After it was all in her, it was back to the plain fluids. Oh yeah, and the time there would be peeing. Lots and lots of peeing. And during all this she would go down for her first radiation treatment too.

FLUIDS

The blood work was good so they hung a 1 litre bag of fluids and we all sat around watching it drain. And drain. And drain. Then it was time for radiation so the IV was unhooked and the porter brought her down in a wheel chair. First to the mould room so they could do a couple of last minute adjustments to her mask, then downstairs to the radiation therapy rooms where she got her fist dose. Back up to her room and the IV was hooked up again.

CHEMO

She was well hydrated. It was around 5:30 when the chemo bag was hung, and it would take about 2 hours to drain. By now she’d been given a handful of anti-nausea drugs which were definitely having an effect.

MORE FLUIDS

When the chemo was done it was time for more fluids. Another litre bag was hung and it slowly made its way into her system. The day was wearing on us all, and we were all getting pretty tired. Her Mom, Josie, said she was staying overnight there so I went home and got a few hours sleep before getting back before 6AM (when Josie’s parking pass would expire).

WAITING FOR RADIATION

The Tuesday radiation appointment wasn’t until 2:30. This meant sitting around in the hospital ward until then. We tried to get it moved to the morning, but apparently it was pretty busy down there so no dice. We had one final visit with Dr Cooper and he explained the 7 (!) prescriptions we had to get filled and more warnings about upcoming side-effects. So many side-effects.

DISCHARGE

Finally got discharged and had the radiation treatment and went home. The cats were, of course, indifferent – almost like they didn’t realize she’d been gone for 30 hours – to her arrival.

BECOMING ROUTINE

The radiation treatments on Wednesday and Thursday both went off without a hitch. The treatments themselves are less than 10 minutes and it looks like if we show up early, she gets in early.

 AND SO ON

And that’s pretty much what’s going to be happening for the next few weeks. Daily radiation from Monday – Friday wit the occasional, intrusive, chemo session. But we’ve already seen a dramatic change.

AMAZING CREW

I can’t say enough about the various nurses and doctors and other staff we’ve dealt with at the Cancer Centre. Every single person has been kind, helpful and generous. They have made this a far more bearable process.

The Cancer Chronicles: Week 5

THANKS FOR WHAT

On Sunday we had a full-on Thanks-christ-giving-mas dinner. Roast turkey, stuffing & dressing, mashed potatoes, Brussels sprouts, cranberry sauce and gravy. With pumpkin pie and mincemeat tarts for dessert. Nothing but lethargy and a big stack of leftovers afterwards.

YET ANOTHER SCAN

Tuesday was the CT scan. This involved her wearing the mask they’d moulded last week as they took a bunch of pictures – slices – of her neck region. Dr Wu will then use these to plot exactly where to target the radiation.

START DATE

And the very next day they called with the start date for treatment! On October 27th she’ll check in and it will all start. This means we’re looking at an end date of Monday, the 15th of December. So she’ll be done just in time for Christmas.

Counting down the days…

EMPTY CALENDAR

And now there’s nothing else on the calendar until the treatment starts, which means next week’s Chronicles could be very brief.

 

The Cancer Chronicles: Week 4 (and a bit)

APPOINTMENTS, APPOINTMENTS, APPOINTMENTS!

Friday morning the appointment schedules came flooding in – finally! Radiation planning, face mask, and CT scan. Suddenly there were THINGS HAPPENING.

PET SCAN

But before all that, the PET Scan. After fasting for most of the day (well, she was fasting) we were back at the cancer centre Tuesday afternoon. Another form to fill out, then a short wait and they took her in to prep for the scan. In a little while I got a text from her saying it would be over an hour so I left and wandered around. She was all done in about 90 minutes and then we went home to, you know, wait.

MISTAKEN PHONE CALL

Friday afternoon we had back-to-back appointments scheduled. First would be with Dr Wu for radiation planning and then to the Mould Room to have her face mask crafted.

This isn't hers, but it's the same thing

This isn’t hers, but it’s the same thing

At 8:30 that morning I her her phone ring, and judging by the sound of her voice, I could tell it was both important and good news. Turn out Dr Wu didn’t see that we were coming in that afternoon and didn’t want her to have to wait all weekend to her the results of the PET scan. And it is the very best prognosis we could have hoped for! The cancer is both small  (3 cm) and localized (that is, it’s only in one area.) Needless to say we were elated.

It looks like treatment will start sometime between the 20th and 27th of October. Which means it will be over by mid-December. We’ve read that the couple of weeks following treatment are some of the worse, so … Merry Christmas!

UP NEXT

The CT scan is scheduled for Tuesday and that will give Dr Wu the information he needs to plot how the radiation treatment will be applied.

The Cancer Chronicles: Week 3

Previously.

CHEMOTHERAPY

We met with the chemo doctor on Friday. Dr Maggie Knowling all but oozes warmth and comfort and immediately put us both at ease.  She talked about the role that chemo would play in the treatment, that it was there to assist the radiation and make it more effective, but that it was not the treatment itself. She told us that there would be three sessions, one right at the start, another midway and the final one would be in the last week. And that these would be in-patient procedures, to better monitor fluid levels and for easy administration of lots and lots of anti-nausea medication.

EATING RIGHT

Monday we met with the nutritionist at Inspire Health. Again he dreaded feeding tube was discussed and what we could do to avoid it. Lots of good fats and protein. Shakes and smoothies. Soups, stews and other liquid meals. This is going to be quite the culinary adventure.

THE SCHEDULE THAT WASN’T

When we met with Dr Wu, he said that within two weeks all the testing would be done and we would be well on our way to having a treatment schedule and plan set up. But that certainly didn’t happen. It turns out that one of the PET scanners broke down and there was a backlog of patients (not that they bothered to tell us that!) But this was finally resolved when they phoned on Wednesday and set up a scan appointment for the following Tuesday.

STILL MORE DENTAL

This week also included two more dental appointments, with a third on Monday morning, to get all that work done before she gets a tray impression done on Monday. This tray will be used for frequent floride treatments after the radiation is all done.

MILES TO GO

Three weeks since the initial diagnosis and we have precious little more in the way of facts. Hopeful that next weeks PET scan will fill in a lot of very frustrating blanks.

Month In Review – September 2014

Unequivocally, Worst.Month.Ever.

Well, not so much ever, but so far as the ones ahead will be their own types of grueling. Between the not-bad-but-not-good news from my cardiologist, Siobhan’s devastating news and a knee injury this month has been a non-stop suckfest. The only bright-side is that I mostly enjoyed myself at the Coho Run. Hopefully I’ve turned the corner in my knee rehab and I can start piling on the distance again.

So, the horrible numbers:

Distance: 99k
Time: 8 hours
Calories: 5.7k
Climbing: 765m
Weight: Haven’t weighed in in weeks, certain I’m north of 185 though

The Cancer Chronicles: Week 2

Previous on The Cancer Chronicles – Week 1.

DENTAL, NOT MENTAL

One of the things that Dr. Wu talked about last week was dental work. He said that Siobhan would have to go see their oncology dentist and if any teeth were bad enough, they would have to be pulled. Although after looking in her mouth, he said her teeth looked great and they would be fine. Of course, all Siobhan heard of this was We’re going to have to pull all your teeth and leave you as a toothless hag!

On Monday we went back to the Cancer Clinic to see their dentist. As I had expected, the checkup went very well and they won’t have to pull any teeth. She still has a little work that needs to be done with her regular dentist before treatment starts, but overall excellent oral health.

While she was seeing the dentist, Caroline – a nurse practitioner – who would be our Quarterback (Dr. Wu’s term) for the duration of the treatments. Siobhan quickly rebranded her the Project Manager. She arranged to meet with us on Friday, when we would be coming in to see Dr. Knowlings, the Chemotherapy Oncologist.

CURRENT MISSION: EAT ALL THE THINGS

One of the long-term side effects of the treatment will be a loss of Siobhan’s ability to taste, and this could last anywhere from 6 months to a year. Because of this, she’s on a mission to eat all the wonderful things and taste all the wonderful tastes. A benefit of this purge, is for her to put on weight. It’s common during treatment like she’ll be receiving to shed pounds. Typical weight loss is 5-10%, but if it creeps up to 15% then they have to put in a feeding tube and pump stuff directly into her stomach. Um … no thank you please. So the goal from now until the treatment is done is calories. Butter sauces, gravies, avocado on everything.

Even more important will be once the treatment starts. We’re going to use a calorie-tracker to make sure that she hits daily and weekly goals – and hey, if it means she has to eat a bowl of ice cream every night before bed, so be it.

STRAIGHT FROM THE HORSE’S MOUTH

Earlier this week she spent a couple of hours on the phone with John, a friend-of-a-friend who twice dealt with this cancer (the first time he had surgery but they didn’t get it all, the second they used radiation and he is now cancer-free.) He gave her some practical advice and outlined what the experience was like for him and what his post-treatment recovery was like. It looks like he’ll be a good resource to drawn on as this process continues.

INSPIRATIONAL

One of Siobhan’s relatives gave her a membership to the Inspire Health Centre. We’ve only just dipped our toe into their amazing depth of information, help, and support, but we can already see that they’ll be a fantastic resource – especially after the treatment is over and we’re done at the Cancer Clinic. Because that’s when the real work of her recovery will begin.

STILL WAITING

We still haven’t heard when Siobhan’s getting fitted for her mask, we still haven’t heard when she’s going in for her P.E.T. and C.T. scans, which means we still don’t know how bad the cancer is and, of course, we still don’t have a treatment plan in place. But as we’ve been told more than once, there is so much of this that is out of our control that we need to accept that these things will all happen and that these people are well versed in what they’re doing.