Kathleen had a good day today! Normally, the low point of the chemo treatment is Sunday morning and she made it through the night without barfing even once. The usual chest pain (not her heart) came back again around midnight, but we had the tools to deal with it. I think being more aggressive with the dex as suggested by Dr. DeC (temp oncologist while main guy is away) as well as better managing her blood sugars helped a lot. She was feeling so good, that she was able to come out to the race to meet me at the finish line and snap a few pics! We even went out after for breakfast at the Dearborn with Elaine and our friend Jan from BC who is here looking after her aunt. After breakfast and the sugar crash, a nice 3hr nap! Good thing we set reminders for medical events in our smart phones as we would have slept through the chemo disconnect time!

Thank you to everyone for supporting me in this run! We managed to raise just under $3,000 dollars which is fantastic!
I of course had Kathleen’s name on the front, and I put my friend Maureen’s on the back. It should be on the back as she has left cancer behind her! Hopefully in a couple of years, Kath’s name will be there too!
Click here for more pics of the morning.

My business partner and friend Keith came out to run with me and give me support which was very much appreciated!

The route for anyone interested was http://connect.garmin.com/player/228565416. The road part is not so nice, but the trail run by the river was very pretty.

—Mike

8am
Early start to the day. While getting jabbed for her bloodwork (picc line team doesn’t get here until 9) she chatted with an older gal who is getting the same folfox, but for colon cancer. Kinship in cancer. Kathleen’s cancer aunt.
9am
Nice choice of seating when you are here first thing. Super kind and cheery nurse today. They all are. Different personalities of course, but all cheery in their own way. It was a peak fall day outside and we had a great view of the morning sun from the corner seat. I snapped a series of portraits of Kath that really captures the emotional range of the day. Crying about what might come, wondering what will come, laughing at whats here now. All over the map all in the first hour.

9:30am
New drug teaching with the pharmacist. These are not your shoppers drug mart, “here is a pamphlet” pharmacists. They are really into what they do. They are up on new studies, they keep track of progress across treatments. You really get the sense that in school, these were the kids you would go to for help if something was beyond you. Its a good feeling that they are in your corner when you are about to take all these freaky deeky drugs into your system
10am
Blood results finally back, so good to go. Lots of little markers to check and make sure. First the dexamethsone and ondansetron via IV. Then more hydration to make her pee and then the new one, Avastin. A full treatment (possibly 24 cycles) costs up to $40,000. So $780 a blast on 24 treatments. A dollar a drop ?
11am
About half a bag of avastin done and vitals are unchanged. Good. By now she would have had a reaction if she was going to have one
Nice to be through the unknown part. This drug has an expire measured in hours, not days. Best before 18:47. Witch’s brew. Let’s hope its better than eye of newt
The rest of the trip is more of a known.
I am always surprised at how kathleen is usually the youngest person in the room. People are generally here for a few hrs. Almost half are alone. Most folks don’t have the flexibility in their lives to take even more time off. As I look around at the faces, I always wonder what their stories are.
3pm
Having fun looking at the dog shaming website (thanks Megan for the link!). Kathleen is the only person here laughing out loud. For such a smart woman, nothing makes her laugh like a football to the groin! The dog shaming site is the canine equiv of that in some ways. I like it too, but its much more fun to see kathleen laugh. The anxiety is lifted a lot since we are through the critical phase with the avastin. Now the regular folfox stuff… Steroid, anti barf meds, cal-mag with a lot of saline, then the benedryl, hydro-cortezone, oxalaplatin, lucavorin, 5FU bolis, another bag of hydration and about 8 trips to the WC and finally take away bottle of 5FU for 46 hrs
4pm
Still some time to go. The drugs need to be spaced apart in certain doses so it takes a while. What’s the rush anyways
5pm
Technical difficulties. Small kink in the one iv line so it slowed the oxalaplatin down to the point where it adds another hour to the day. Drag. Have to move over to “chemo detention room” aka next to the charge nurse’s station where all the other stragglers are left as 5pm is the end of day for our nurse.
6pm
Finally on the last bag of cal-mag…. Out the door at 6:30pm

A long day, but an OK day. Well, better than OK. As I have said before, Kath and I at least look forward to spending time together. Not exactly our first choice venue (Maui is just a little bit better).

—Mike

Hi Everyone,
I will be running in the Run for the Cure this weekend in support of Cancer research. Although Kathleen has duodenal cancer and not breast cancer, it doesnt really matter. The support here will help people like her in similar battles. And frankly, the medicine and knowledge engaged in Kathleen’s current fight has been made possible by people years ago, making similar donations. So please donate in Kathleen’s name. There are a lot of people afflicted with this awful disease now and in the future. You can click on this link to go to her site at the run for the cure and make a donation in her name.

This past week has been a pretty tough one. The CCAC decided (without asking us) we needed more specialized care at home, so they changed the nursing team on us. This partially seemed automatic (due to the new diagnosis now having distant metastatic spread), and partially because we were just punted to a new case worker. We generally dont interact with the CCAC directly, so a new case worker didnt really matter. But the change meant losing Maggie, our “super nurse.” I would say all the nurses we have had were at the very least good, and some great. Maggie however, was an 11/10. Resourceful, skilled, professional, a problem solver, experienced, kind, friendly and just a really great person to have in our lives, not to mention trust with Kathleen’s life. So to lose her and go to someone else was tough and felt like we lost a leg in our supports. Plus, as part of filling out all the insurance forms, we got to look at her oncologists’ reports. Although technically there was nothing new in them, to see it all together in black and white in 6 detailed pages… Well, it was a real kick in the gut. Combined with the nursing change, where the case worked called me (not Kathleen as if she was incapable of speech) to inform us after the fact that we were now getting a Palliative nursing team.. HANG ON, PALLIATIVE?!?! Yes, it felt like they were one step away from “Grave or Cremation, sir?” ..Technically I was told Palliative is not end of life, its… Well, here is the Wiki def http://en.wikipedia.org/wiki/Palliative_care. Whatever. You would think they would be a little more sensitive about throwing around a word that in the vernacular means end of the road even if technically its not… OK, so they didnt mean it that way, fair enough. But all these little things made for a very tough emotional package to digest this past week. Some days it all seems so dire, some days not…

Speaking of Roller Coasters, on the somewhat plus side, we heard from Kathleen’s insurance agency that they will pay for her Avastin treatment. This is a different type of chemo drug that works by stopping new blood vessels from growing. Its good in 2 ways that its covered. One, it costs $40k. So for us not to have to pay that. Well, thats nice. Two, the fact that her insurance will pay for it means that they think there might be some benefit. As this is an off label treatment, they could have said, “well, she is a gonner, so we are not going to waste the forty thousand on someone who is going to die soon anyways.” OHIP only covers drugs which have a demonstrated efficacy. As there are no studies on Kathleen’s cancer, no one really knows if it works. But since this is lumped in with colon cancer, the doctor thinks its reasonable to try…. So, just as she was getting used to the FOLFOX side effects, there will be a new one to deal with and she will push on forward…. It feels like we are skipping to Mordor.

 

Although I did do most of the eating, it was great to see Kathleen pick at some of her food at her fav Thai restaurant .

—Mike

Physical side effects were a bit better, but the psychological/emotional challenges were way better for us. Still had that nasty chest pain, and threw up around 4am this morning, but it was all way more manageable. When you know what to expect, even if its really shitty, its easier than when its unknown. So we kind of expected the barfing, kind of expected the chest pain and could at least better control the blood sugar issues thanks to the insulin strategy our GP and her nurse practitioner came up with. Both of them called today and yesterday to see if all was going ok and to make sure we didnt have any more questions. Pretty amazing care. Really, we are very lucky to have such an amazing system of super professionals helping us. Too bad the GI from pre diagnosis was the C- in all this as everyone else has been A++. Even the pharmacist just called from Marchese. Because Kath could not keep the steroid pills down, we got them in IV form this time around. He called just now to see how it was going and what our schedule was like so the repeats would come in a timely manner. Yes, on a Sunday. Very cool.
So cycle #2 with help from the crew is almost behind us. A little recovery now, and more importantly, hopefully all those chemicals are beating back those little cancer mets.

—Mike

I was burning a copy the other day of Woody Allen’s Radio Days for a friend and loaded up the start to make sure it was working. It opens up with a scene of some low rise apartment buildings in New York near the stormy shore. He voices over

forgive me if I tend to romanticize the past. I mean, it wasn’t always as stormy and rain-swept as this. But I remember it that way… because that was it at its most beautiful.

Its kind of a day like that here. Lots of rain, very overcast, but beautiful. If you haven’t guessed already, I am quite a sentimental person and I really like that part of Allen’s films. He is so in love with his city and all that’s beautiful in it. Although the reasons for being here are awful, Kathleen and I look forward to the time we get to spend together. And the Cancer Centre’s architecture is wonderful and the people are genuinely friendly and kind. So what’s not to like. Yes, there is that little business of the cancer, but sometimes its just a contrast to bring into focus the good things around. Sometimes anyways.
Our friend Alice is here visiting all the way from Tunis and its great for us all to chat away about non cancer matters. Kath is so much more energetic and peppy as they talk stats and research. I kind of feel like the 3rd person narrator from the movie today. Sitting back, commenting and reflecting on the day while I watch Kathleen and Alice gleefully chat, is giving me a nice checkpoint day.

She needs some breaks and topics that engage her mind are just the thing. At one point, it was like Kathleen was running a Parisian Salon at the cancer centre. Her cousins Terry and Colleen came for a visit and her brother Drew is in town for the weekend. As well as being a great brother-in-law, Drew is always ready for a great picture. To riff on an internet meme, he is the ridiculously photogenic brother-in-law 🙂

We of course have a bit of background anxiety worrying that round two will not beat back the shoulder pain as a result of the cancer spread (which was slowly coming back again as of Wednesday)… but to deal with that, we are channeling our boss level procrastination powers… ‘Cancer ? Ummm, yah, yah… we will deal with it tomorrow…Today was just a beautiful day’

—Mike

It was a great night out with our friends Diane, Keith and Alice.

Good food, good company and enjoying the moment and not worrying about tomorrow. What more can you ask for. A nice way to prep for the weekend, which we are a little more optimistic going in to deal with the side effects. This morning we had a training session on how to inject with needles which will give us another tool to try and better manage the side effects. A really nice young nurse practitioner who took her time to make sure we were comfortable with what we are doing. We have met some amazing medical professionals along this journey, and today was yet another one.

—Mike

Its hard sometimes to know if Kathleen is making progress or slipping back. There are of course days like last Monday when she found those lumps, and last Friday where the Dr. used the phrase “game changer”…. Then there are days like yesterday and today where she started to feel a little better as the chemo effects wore off and, even better, the lymph nodes shrunk a bit. Although still evident, they are definitely smaller. There is way less pain for her and we can qualitatively see the difference in size. We met with the radiation oncologist yesterday and “Team Pain” today. Both seemed to think the shrinkage was due to the chemo and not the steroids… That would seem to be steps forward. Today’s technology will never kill them off, but if they can be kept in check… Well, its something to hope for…. But, there is a but. Of course there is always a but. She might not be tolerating the FOLFOX. One of her side effects over the weekend was a lot of chest pain, which could be indicative of stress on her heart…. Or not. So in round two, when the chest pain comes back, we will have to go for an EKG to make sure its not a cardiac issue and just some strange side effect. So, we are kind of like the Flintstones Dance Step. X steps forward, Y back. (Thanks Keith for finding and thinking of the pic!)

Are we moving forward ? Sidesways ? Backwards ? Too early to tell really. We also heard today that the hospital has the paperwork underway to secure funding for Kath’s Avastin. This is sort of news to us as our Chemo Dr. mentioned we might add it later in October depending on how the FOLFOX goes. Not sure if he assumes the reactions have been too much for her, or with the distant metastatic spread he wants to add it sooner rather than later.
So still a very frightening future, but she has a bit of a chance to catch her breath before next week. Plus with some more tools to deal with the side effects (eg. insulin pen), we are a little more optimistic about weathering through round two.

—Mike

Cant thank enough the folks at the Cancer center for scrambling to accommodate us on Friday.  Medically, it probably would not have made a difference to wait until next week to start, but psychologically…. Mentally, it would have been really tough to sit around this weekend wondering what the cancer was doing unchecked.  Normally it takes a bit of time to get it all organized, but they did it.  On a Friday.  On a Friday of a long weekend no less, several folks worked past their quitting time just so that we could begin the Folfox treatment. First some hydration with calcium.  Then some sterioids and Zofran and then the leucovorin (Folic Acid) followed by Oxaliplatin over 2 hrs….A blast of 5FU and then the 5FU take out bottle for 46hrs which Kath finished today. (This will happen every two weeks until March.) We didnt get out of there until 7pm. Amazing staff.
It was pretty hard on her Saturday and Sunday. More vomiting both days. Now that she is off it, she is starting to recover. The steroids (or Chemo?) did take the swelling down a bit on her lymph nodes, so some pain relief from it. But she is feeling pretty miserable. Hopefully tomorrow will be better.

Just want to say a big thank you to everyone for their support throughout this. Every email, comment, card in the mail and phone call really helps both of us. So keep them coming when you can 🙂

—Mike