This had been a really rough week for Kathleen.  It seemed we were maxing out all our tools and nothing adequately controlled the un-ending nausea. Plus pain, plus cramps, plus chills.  We met with the pain management team on Thursday, and got some bigger tools to work with.  75MG gravol bags, more zofran, more domperidone, more, more more.  Her weight was steadily dropping this week too which was worrisome.  Not as fast as before, but still trending the wrong way.

So when good  days come, you take them.  Friday of course was the Olympic opening ceremonies which was a welcome distraction.  Pizza and beer for me and Jan, and perhaps a little bite for Kathleen ? Sure enough, a bite or two while she was glued to the TV. I think the distraction of the Olympics is a big help!   Still had to break out the gravol, but a couple of small slices went down and stayed down. Then a few bites of cantaloupe and  watermelon.  More Olympics, and a few more bites.  This morning, feeling a little better.  Still cramps, still nausea, but everything dialed down a bit for a change.  Some more melon and a little yogart for breakfast.  MUCH better.  A little more energy, so we took the opportunity to go to Snider Flats with Orville to see Kathleen’s favorite birds, the bank swallows.  She even had a bit of a Tim’s bagle in the car to boot!  So why is today better ? Who knows.  We will just go with it and enjoy it. It was a fantastic morning to be out with her, Jan and Orville enjoying those normal things again.

wildflowers

Where Orville wants to be!

A voicemail from the man himself! Well, some optimistic news around that.  He talked to the radiologist as well as had a look at the scan.  This is a guy who has done many Whipple and GI procedures over the years so we trust his opinion / assessment.  He thinks its post op fluid or perhaps a small cyst, but he too doubts its more duodenal cancer.  He also emphasized, even if it was, the protocol we are doing now (chemo and radiation) is what we would want to do if it were worst case scenario.  So some welcome news.
Meanwhile, the nausea and cramps continue to be really bad for Kathleen right now.  She is down to 9 more radiation treatments before getting a month off to recover and prepare for round 2 when the heavy duty chemo concoction starts.  But she is pushing through and determined to get through 28 blasts. The TPN is keeping her weight stable as she is not really able to eat anything.

Also just want to say a BIG, BIG THANK YOU to everyone who has called, emailed, posted your thoughts and encouragements.  They really do help us get through this tough time.  Keep em coming when can, we love them!

I wanted to make a separate post about Kathleen’s uncle, Garry Turcotte. He passed away last week after his battle with cancer at the age of 78.  Like all of Kathleen’s aunts and uncles and cousins, he had always made me feel like I was an instant family member.  But what I particularly remember about Gary is how much he loved his wife Dorothy and I guess I felt that connection to him–  as many of you might suspect, I kind of like Kathleen.    The last time I saw him was when Kathleen was in the hospital. He was coming back from his own treatment visit with his son Brock.  I am sure he was feeling pretty beat up, but he still wanted to see Kathleen. Incredibly heart warming understates it. Trying his best to be supportive of us, when he was in really tough.  The last thing he said to me was “look after her eh.”

After the funeral, we went down to the beach at Port Elgin and shared this kiss.  Goodbye Garry and Dorothy, this kiss is for you wherever you are.  I will do my best to live up to the amazing standard you set for love.

Well, technically, they were in the cooler and they are just gravol 🙂  We were en route up to Port Elgin when going through Molesworth, had to pull over.  I guess technically, we were doing drugs in the church parking lot.

Drugs to Go!

You would think maybe Dorking, but Molesworth didnt seem to be that awful of a town. Regardless, its great to be able to be mobile. Meds for pain, meds for barfing, saline for dehydration if need be.   Cooler, ice, tubing, flushes, wipes.  Lets go.

update:  OK, I guess you need to be a certain age to know the reference in the title.  Here you go. Dont let it get stuck in your head too much  http://goo.gl/DVNfq

Tried to get to Toronto to visit our friend Maureen who is in town for a couple of days, but sadly it was an “indoor” kind of day today.  She even dressed for the occasion hoping she could will her way out of it, but no luck. Day 9-10 of the chemo and radiation is supposed to be the start of the low point, and it is.  Kathleen had zero energy today and was vomiting from the moment she woke up. And after weeks of constipation, now diarrhea.  At least with former, you can travel, but with the latter… well, a 1hr car ride is no fun.  So spent most of the morning in bed and the afternoon resting in her chair getting caught up on a couple of movies.  On the plus side, the new scary drug does seem to be effective.  She popped one around 2pm and it did control things.  We worry a bit about over using our goto drug gravol as the side effects are manageable.  But its nice to have a number of tools in the drug toolbox.

She did in the late afternoon get a bit of an appetite back and then we tried a little walk around the block.  Had to pop a Zofran mid way, but at least no barfing 🙂  But you can see from the pic below, she is putting a brave face on it and trying to push through

Some days I feel like a guy in front of one of those old 1970’s control boards.  You know, like the ones from those NASA moon shot days ?  Lots of lights on a big console.  When there is a trouble somewhere, a red light would flash and you would flip a switch to deal with the problem.  Then more lights, more switches until there is a fury of lights and switch flipping.  Kind of felt like that this week, just lots and lots of things happening.  PICC lines clogging… again.  No appetite, again… Nausea and vomiting, again and again and this time our last line of defense, IV gravol is slowly starting to loose its efficacy.  Zofran never really cut it, even though its their drug of choice.  So now a new sub lingual wafer, but its one of those scary sounding off label drugs that we need to balance off barfing and… well, the other potentially worse side effects.

Never really got any closure on the CT scan.  Its just going to be yet another thing to just put off and “deal with later”.  Our surgeon, who we also really like and trust, took the time to discuss it with us.  Although he had not yet looked at the report nor looked at the imaging, he would, and he will.  But it boils down to this.  If it is metastatic spread, well, we are doing everything we can and should–radiation and chemo.  If its not, there is no easy way to find out un-intrusively.  And why the 2 months ?  Because typically there will not be any more information to be learned in a such a period of time, and it just stresses people out waiting for report after report…. Yikes

I dont really like that answer, but I can understand it… and we will have to learn how to live with it…. So, one more thing to add to the list.

—Mike

A pretty frustrating meeting. The scan was the correct one and there is a mass on her pancreas. Its not clear what it is. Could be cancer, could be fluid… Dr. keeps saying in a rather dismissive way that it would be unlikely its cancer as it would not grow that fast… Having heard the word ‘unlikely’ far too often in this whole trip, doesn’t exactly sit well with me. He said there was no easy way to get to that location to examine it in detail, so just ‘wait 2 months and see’… Don’t have a sense of him to know how thought out this plan of inaction is. It might be true. We see her other oncologist tomorrow as well as her surgeon. Those are all super short appointments so not too optimistic we can get any other details.
Off to another type of xray next. They are worried Kath might have a blood clot forming on her lungs. If so, she will need some blood thinners. Not really the day we were hoping for

Another amazing group of people today to help us at the Cancer Center.  This one specializes in pain and symptom management.  A nurse, a doctor and a resident.  All three, super people.  You can really tell when someone works a job as opposed to someone practicing a craft.  Kath is going through a rather rough spot again, and its helps so much to know that everything possible will be done to help manage these side effects of the treatment, or the impact of the cancer. 

Still no word on the confusing CT.  We asked the resident, and she went to look at the report, but it had not yet been updated.  Frustrating, but we appreciated very much her going to look.  Little things like this can make a big difference.  Not sure if they realize that, but I suspect they do.

Dr. had a real guru look to him.  Big beard.  He would be a UNIX King Nerd, if he were in computers with that beard.  The type of doctor who knows how to talk and convey confidence and trust.  Not in a condescending or impatient way, but just the right amount of gentle assurance in his voice. He answered all our questions, explained why he wanted to follow plan #2 and not #1,3,4, but if need be, there were other strategies in reserve.  

So more waiting.  We are both anxious about hearing about the CT. It wont be until Wednesday morning… at the earliest

—Mike

Well, results from the bone scan and the CT and both are kind of odd.  We were hoping for a ‘clean win’ that we could savor into the weekend.  Obviously we were thinking the news would be either bad or good, not of the “Huh?” variety and thats kind of what we got.

Our first meeting was with the radiation oncologist to see if Kathleen was ready to resume treatment and he thought based on her general well being and blood tests, yes…. but he would differ to the chemo guy.  So once that quick meeting was almost over, we asked if he could tell us the results of the bone scan.  He didnt order it, but hey, why not ask. So, he opens up the laptop, starts looking through and says, “Spine looks clear. No tumours” …. Huge sigh of relief…. “But, you have two spots on your ribs” Spots?!?!? WTF!?!?!, “But they appear to be ‘healing spots’. Did you break your ribs sometime in the last 1-9 months?”…. Now that is bizarre.  We scratched our heads and could think of nothing at all.  Not even a fall, although Kath did slip on the ice in the winter a year ago, but landed on her ass…. Hmmm, ok.  A little more back and forth about what it might mean and he says dont worry, its ok.  Then, just as he is about to leave, I think why not ask about the chest CT from yesterday. Perhaps its done.  Sure enough it is.

So, Kath, Elaine and I lean forward as I ask, “So, what does it say?”…. “Lets see…. chest looks clear…” Yes!!!…. “But, there is an unknown mass on the head of the pancreas”…Head of the Pancreas?? WTF, that part was lopped off in the surgery. There is no head left”… “Well, its probably just the scar tissue from your surgery. Its highly unlikely you would have a new tumor in just 10 weeks”… Considering she has had any number of CTs its odd that there would be something there in a just a few weeks.  When we asked the other oncologist what it meant, he said he will get clarification with another radiologist as its odd they would refer to part of an organ that no longer exists.  Did they mix up someone elses’s CT ? Is there a new tumor on her abdominal wall ? But how could the guy/gal misidentify the location so badly.  There really is no head of the pancreas left. Or did they mean, on the part thats left has a new tumor.  Unfortunately, no answers until Monday when we meet with chemo guy again.

Hooking up the chemo took a bit longer than we hopped. There was a bit of confusion about where orders were etc, and its not something that is just on a shelf somewhere.  So that meant Kath was there the whole day.

So, here were are.  Back on the horse again.  Kath is sitting in front of me as I type, looking a little tired, but thats mostly from the gravol.  She attempted a rather large meal (chicken kebabs from our bbq with roasted potatoes) and it gave her a bit of nausea.  So before it got too bad, gravol.  So, some steps forward, but a new limbo until Monday.  Well, hopefully no longer than Monday.

—Mike

An interesting morning with the genetics person. Like the pharmacist, its always cool to meet people who are really into what they do.  She did a detailed family tree to see if there was any potential genetic component and she thinks there might be.  At least enough data to warrant further investigation.  Some details at NIH.GOV as well as the wikipedia entry for Lynch Syndrome.  Its actually a bit of an ethical minefield and the she was pretty good about raising some of the cans of worms it can open.  Kathleen wants to go ahead with it for sure as it might be able to help her biological siblings.  If she does have this genetic marker, some more aggressive screening for her brother and sister might detect some cancers very early when treatment would be a simple zap from a endoscopy or colonoscopy… But if you are ever faced with this decision, I highly recommend the quirks and quarks podcast at http://www.cbc.ca/quirks/media/2010-2011/qq-2011-02-19_04.mp3 which talks about this issue in detail.

Morning started out with a bit of a twist.  Just as we were leaving for her chest CT scan, the vomiting started out of nowhere.  Not sure why as she had no food in her stomach as she had to fast.  So back in the house to get some gravol hung.  So it was gravol to go.  Literally, driving to the hospital while Kathleen is holding up her bag of gravol from the roof of the car.   Ran it a bit fast, so it would finish by the time we got there.  Then, flush the line in the parking lot, junkie style 🙂  But we made it on time.  She is a tough woman.

Had some more annoyances with the PICC line. This one seems to get blocked more often, so she had to spend an couple of hours at the center to get it unclogged.

Another big day tomorrow.  Restarting the radiation, perhaps the chemo ? Not sure.  And then  results from the bone scan.  We are a bit nervous, but trying not to think about it too much.

Reading Email

Back to work today for me and a nice day for Kathleen and Elaine together doing some simple things– going to the mall for a short trip, and washing the new Eddie Bauer order that came in the mail today. (6-8 weeks is a long thing of the past in this instant gratification age).

Still 3 bags of gravol today unfortunately and only a few hundred calories of food. But I think a little better emotionally today.  Doing these normal things help. Certainly for me, I have my work which forces me to focus on things outside the bubble.  For a bit.  But even better, we had a nice walk around the neighbourhood tonight for Orville’s evening outing.  We love this time of year.  Orville is by far a winter dog, but for us, this time of year is the best.  Something about walking under that thick green canopy dappling the evening sun in 30C heat is just so welcome after those dark winter nights.  We took our time, stopped and talked to our neighbours and just enjoyed the moment.  It wasnt “best night ever”, just nice.  But, its great to be able to be in that moment again and enjoy something simple again.

Tomorrow is the lung CT scan.  That can be one of the places it can go, so better take a good look.  Kathleen’s new radiation schedule is up too.  Back to the radiation on Thursday.  No sign of the chemo, but not sure if they just have not updated the schedule yet.  Also, a long 90min appt with the genetics people.  I guess there is some suspicion there might be a genetic aspect to this type of cancer.  No idea what to expect, but we will find out tomorrow.

Kathleen wants to say that she really appreciates all the emails and comments she gets.  She wants very much to respond, but her focus and energy is not quite there yet.

—Mike

Kind of a full slate this holiday weekend.  Kathleen is still recovering from her pissed off pancreas and that means periods of nausea and vomiting, chills, no appetite and then normality for a bit… Then back to the awefulness and then out again… etc etc. ad nauseam…   The gravol kept things mostly at bay which is good, but still a little disconcerting that we had to resort to it 3 times a day, not to mention it makes her pretty tired and dopey.   But, better that than throwing up.

Emotionally, holidays can be hard.  To be frank, our minds both wander to the place where you think, will this be our last Canada Day together ?  We really wanted to go see the fireworks, but the pancreas thought otherwise.  Still, you reach for those small moments of normality where you forget for just a brief moment that you are in that bubble and those can be very nice indeed.  Today for example, we went upto the Conostogo river with Orville in the morning.  Not our normal long walks together, but that was ok, we try to appreciate what we have. We spent the time throwing the stick for him in the river which he quite enjoyed.  Then we went up to Elora for some ice cream and then home for a BBQ.  It was one of those blue, blue sky days with bleach white Simpson’s puffy clouds.  As you can see from the picture, our cat Betty, has a seat to herself– and yes, she is cutting Betty’s chicken for her 🙂   Ending on a happier note, but still kind of a hard weekend.  Sometimes its just not easy to shake things off.

Throwing sticks and drinking a coffee with Kathleen and her Non-Registered Nurse, Orville

Things were a lot more under control yesterday. Kath had a bit more energy and the gravol was doing the trick keeping the vomiting at bay.  We were also shown how to hang and regulate the saline drip, so made sure she was well hydrated.  We will call yesterday a win.