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

Just as we were sitting, waiting for Kath’s picc line to be de-clogged, out of the blue our GP calls on Kath’s cell. We have always had a lot of trust and respect for her and this phone call only blasted that home in spades. Not sure if she will ever know how much that little call / effort meant to us, just when we needed it most. But she just wanted to let Kath know she had been following all her blood tests as well as the various reports, like this achingly troubling CT scan. Long and the short of it is that she was really happy with the fact that her liver enzymes and all other blood tests were all excellent and her hemoglobin was finally going up too. As for the mysterious mass on her pancreas, she too was skeptical about it being cancer and it was more likely that it was a post op complication as its not unusual to have a cyst. But the expert to consult would be the surgeon, which we happen to be seeing tomorrow. Her reassurance and pep talk really meant a lot. Perhaps chemo dr can get some pointers from her on this aspect of medicine.

Update

Just heard no blood clots in the lungs either. Quick pitstop at home for some gravol to go and off to UofW for her wellfit class

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