While flushing Kathleen’s picc line last night, we noticed the tubing was bulging like a bad tire about to blow. So, a quick call to the cancer centre this morning to see if this is something to worry about and within a few min a call back to let us know the IV nurse would meet us after the radiation session to assess. A quick look by the specialist and sure enough, time to replace the picc line. “When?” “Now”… Its amazing how fast these things can happen. When you are outside the bubble, everything is painfully slow by comparison. Full body bone scan ? “How about tomorrow” vs “how is next winter for ya”…. Everything is ‘now’ in the bubble. I kind of miss, ‘how about next winter’

Lots more nausea and cramping today that has carried over since yesterday. Rough roads right now.

repairs

A long day, but she got through it.  There was a lot packed in today.  First a trip to Nuclear Medicine to inject some radioactive contrast.  Then back to the cancer center to get a session with the pharmacist to learn all about the meds she will be on today and how to manage them.  Pretty neat guy.  Its always a treat to meet people who are really into what they do, and who keep up with developments in their field.

Chemo was next.  Another nice person to meet / work with.  It was a bit unnerving as the nurse puts on a lot of protection gear. Full face guard, mask, one time disposable gown, rubber gloves that all went into a cart with several categories of “danger” on it All, just to hook up the bottle of fluorouracil. There is a bit of “Wait a minute, you are putting this stuff into her veins??” moment as you put it all together.  
Its kind of a strange contrast this building. When you are in the surgical ward, you feel like crap, and the surrounds are… well, crap. So there is a sort of congruence there. But this building and space are beautiful.  As you can see from the photo, the window is open, natural light coming in and birds in the trees.  Just outside the window were a pair of house finches singing away all while you are getting a nasty toxin dripped into your body. Odd feeling.

Radiation wasnt as bad as the first time for her as it was a bit quicker as compared to her initial setup.  Really great staff there too.  They know people are dealing with some pretty heavy shit, and they do everything possible to accommodate your supportive needs. So while Kathleen was being set up on the radiation table, I could be with her to distract and keep her company.  Its quite the room.  Giant whirring box panels with dozens of controls and numerous sensors.  Its something you would expect Wyle E. Coyote to have from the ACME corporation for some crazy scheme as it seems so over the top big.  Plus, when you are on the table, there are a dozen lasers all criss-crossing over Kathleen to help line everything up literally to millimeter precision.   Looking at her you have this urge to hang of a few shelves on her as they look like those laser levels you get from the Home Depot, except there are 2 dozen of them.

Then, you leave the room to wait outside for her, and you would think you are in the lobby of a very pleasantly designed movie theater.  Off in the distance, is the sign displaying the current movie being shown– “Now Playing- Radiation, With Kathleen McSpurren” There is even the little tape barrier to let you know the movie is currently in progress.  Quite the movie.

Once that was done, back to nuclear medicine for the full body scan. Since there are no markers for this cancer that can be tested for, its all monitoring self reported symptoms.  So when Kath told the Chemo Oncologist she had a new pain in her back, he ordered the scan without blinking.

Then, back home to digest the day.  Lots more handouts today.  Possible side effects, possible complications, how to manage the drugs, other support services available etc, etc.  A bit of nausea this aft that she was worried would come to more, but the magic Zofran pills did the trick along with walking around the block a few times… I didnt have to hang any gravol which is a bit of a last resort.  Although very effective, it kind of knocks her out.  But that didnt happen and we got through day one of…. well, ~ 250

—Mike

1st Chemo, 1st radiation, spinal scan, Chest CT…. Lots to do tomorrow. Will followup tomorrow night as to how it all went

I’m still digesting all the information we received on Tuesday from the oncology team.  But what I quickly realized was that I’m looking at eight to nine months of treatment…  Radiation and chemo-light begins next week, runs for five to six weeks; one month break is advised after that; then the chemo-heavy starts in earnest, for six months!  To be honest, its pretty scary!

Another thing I realized was that some very sick people go to the cancer centre – I caught a glimpse of some of them  when I went through the chemotherapy area for my blood work.  Up until now, I’ve been quite detached from the cancer side of this diagnosis, since I’ve been focused on the surgery recovery.  Up on 6D, I didn’t see the hair loss, the weight loss, the ravages of cancer treatment.  That’s potentially going to be me.  And since I’m being honest, that’s very scary too…

In contrast to these realities, I have received so much love and support from everyone that I know I’ll get through all the scary stuff!  Thank you all.

Kind of a rough 24hrs for Kathleen.  As many of you know, Kathleen has always been a picture perfect eater– good variety of foods, healthy choices etc.  So dealing with the post surgery consequences of having a Pancreaticoduodenectomy have been challenging.  One day its non stop diarrhea and now its serious constipation again.  Last time this happened it landed her back in the hospital.  But this time at least we were much better equipped and prepared with the necessary tools.  We had IV gravol and sublingual Zofran to deal with the nausea and vomiting. IV Pantaloc for acid reflux and better pain management with a patch.  She has 3 different meds to try and move things along as well as a new one that comes in what looks like a shampoo bottle. But so far no “break through” if you know what I mean.  By 1 pm, at least the pain had subsided enough for her to get up.  Since walking really helps, we went off to the air conditioned mall to do laps and that seemed to help somewhat.
We also added a little fruit back to her diet today.  Some cherries and watermelon as well as fresh local Ontario strawberries.  Nothing in normal quantities, but still. Its a start and it went down well.  The big question, is when will it go through!
So a down day today after a couple of pretty good / normal ones.  It was really hard on her this morning, but her spirits are much better now

Ok, we like the guy so far. He was pretty no nonsense– seems like a guy with something to prove and is competitive. To the point, no time for chit chat, but was not the kind of doctor making his way to the door when we said, “we have some questions”….. His nurse was very thorough and helpful as well. He was up front about the fact that there is no established protocol which we knew. He said generally they treat it as a colon cancer type issue which we also knew. 5fu, folofox etc etc, the same drugs and protocols as what we have been reading about, so no surprises.
He asked a lot of questions too and more importantly, didn’t blow off self reported symptoms which both Kath and I really paid attention to. Good stuff, as that could have been a deal breaker. In fact, when we asked how we would know if the treatment was “working” he said there were not any markers we could test for and really it was just patient reported symptoms that would cause specific investigations and would need to be closely followed. So when we mentioned new pain in her upper spine, he said he would order a scan to investigate now. So that was very reassuring he wasn’t going to piss around. There will be of course yearly scans and tests for any obvious return, but he warned us, this type of cancer can be a pernicious little bastard regularly returning….. So, will have to get used to life like that, but better that than no life
Speaking of little bastards, we also got clarity on the pathology report. It’s often hard to tell from the word choices used by that profession. So when they say, “we favor duodenal as the primary” does that mean its a guess? Not sure? Pretty sure ? And considering so much is based on the path report, is this person experienced? Good? Reliable? Yes, very and very. So that bit of info was quite reassuring. When you think of it, everything going forward is based on the pathology report, so if they get that wrong, everything potentially gets messed up.

We had a good chuckle at doctor’s note taking. Her asked about family history, health, longevity and if there was a history of cancer or not. He started to draw a family tree and made a couple of stick figures. He put Elaine on one side, drew her father on the other and said, “well, your mum is here so she is obviously alive and looks healthy. What about your father? ” When kath said he died of cancer, he just put a big violent line (STRIKE!) through the figure he had just made! We both nearly burst out laughing. It’s quite macabre yes, but you really draw on gallows humour to get through this.

There was a really a lot of information today. Good thing the nurse gave us handouts. Side effects out the ying yang. More drugs to manage those side effects. Diarrhea, constipation, nausea, vomiting chills etc…. In other words, just feeling miserable. So, just as she is feeling great, she is ready to get the crap beat out of her. But, on the plus side, she is stronger now and more prepared to give a good fight and she will need her strength. It all start as early as next week. She is a little anxious right now, but hey, who wouldn’t be. Nuclear and chemical war in your guts doesn’t exactly sound like fun, but she is toughing it out.

—Mike

Normally I abhor H&M, but it was great to be there today with Kathleen doing ‘normal’ things again. After missing 2 months of regular day to day things with her, banal activities are in a new light. Hello mundane, I missed you.

On the phone with Diane from H&M

Of course its great to be home!  And when I woke this morning, I immediately realized where I was and just sighed …

Going to the office today was a real treat!  I miss the terrific folks I work with.  And the warm reception I had was just so wonderful!!  I also miss being a working, thinking, creative person – I guess I’ll have to put that creativity and work towards beating this disease.

More to come later…

Kathleen

We bought a new chair and of course Betty thinks its for her…  But they both fit there well.

Home again and in her new chair with Betty

Good news, I have picked up Kathleen and she is home again out of the hospital!  Not day parole, but full discharge. Just waiting for her fancy new lazyboy chair to come so that she can rest in comfort.
I am more optimistic about managing symptoms this time around.  Unlike last time, we have IV forms of pretty well everything.  For pain, she has a patch that seems to work well which she wore around in the hospital for a few days to make sure it agreed with her.  I know how to hang her IV bags of food and gravol, so should the vomiting start, we have a way to deal with that.  And I know how to flush and clean her PICC line as well.  She is up to about 1000 calories per day, almost enough to be off the TPN feed, but not quite yet.  Soon, stomach willing.

Hello Everyone,

Thought it would be easier to add updates here for anyone wanting to follow Kath’s progress.  As some of you know, today was our first meeting with oncologist #1 of 2.  This guy was a radiation specialist.  Wasnt sure why at first we were going the radiation route, but doing some research, it seems its often done when margins are narrow.  When they did the Whipple procedure, the pathologist examined everything taken out– so all of the duodenum, part of the stomach, some ducts, 19 lymph nodes, part of the small intestine, and a good chunk of the pancreas.  The pathologist was reasonably certain the primary site was duodenal, but that it had invaded (metastasized)  to a large part of the pancreas. The margins were clear on what was pulled out, but only by 1mm.  So oncologist thinks radiation in combo with chemo should be done .  We dont meet with chemo guy until next Tuesday.

The Dr.  seemed good enough.  Young.  Took time to answer our questions, and didnt seem to bullshit.  I like it when I hear answers like “I dont know” as I prefer that to someone blowing smoke.  Chemo oncologist is older on the other hand.  Young, old, either can be a plus or a minus.  He said we could get a second, third opinion and some will agree with radiation, some will not. As this is a very rare cancer, there are no statistically significant studies.  We found a few meta studies that had an n of about 100, but that included patient data from 1974 to now and patients from 30 to 85.  So cant really draw too much from that as there are far too many variables to control– age, general health, stage of cancer, grade of tumor, where it has gone, health of other organs, where they were treated, when it was discovered  etc, etc.

Our assigned nurse gave us a bit of a scare.  I guess something she was reading was not clear or she didnt read it close enough, as she referred to Kath as having pancreatic cancer which is a world of difference that duodenal.  5yr survival rate on pancreatic is 3-5%, Duodenal can be anywhere from 30% to 60%.  Luckily I had the pathology report with me, so we quickly cleared that up.  If you want a good overview, the medscape site is pretty good.  You have to keep in mind the population #s in some of the stats given are extremely small.  So when they say 30% survival rate, that includes people who did not have surgery like Kath did -which is the most important factor for predicting successful outcomes. It also includes people older than 60, who typically are physically not as resilient as someone in their 40s and tend to have other medical conditions going on.

In some ways, the day was a bit anti-climactic.  We kind of prepared ahead of time for the various scenarios.  We didnt of course hear anything definitive and when I asked at the end, what he thought the prognosis was, he really could not commit an answer which is what we figured.  We did talk ahead of time what we would do if he said, something like “Hi, I am here to give you palliative care”, but we agreed we would just ask to see someone else, as its hard to see how things could be definitively dire.

So here we are at the start of chapter three.  Radiation to come and some nasty chemical concoctions we have yet to hear about.  Kath is a bit anxious and understandably so.  She is going to get 25 blasts of radiation and it is all still fog ahead with not much visibility

—Mike