Finally, a bit of a break in round 9.  In the previous 3, Kath had increasingly bad allergic reactions to Oxaliplatin. Rather than even more drugs, they went back to a lower dose of anti-histamines and steroids and slowed down the Oxaliplatin to a 6 hour infusion…. And it worked! I sat there like a sheep dog watching for the tell-tale rashes, and none thankfully came! While it meant an 11.5hr day, thats MUCH more preferable than having her tongue swell and throat close.  It was nice to have a relatively smooth ride after the apprehension leading up to this round.  Of course the worst effects are yet to come.  Usually, Tuesday is the low point.  The question of course is how low will low be.  Still, the first part of the ride was relatively good, so lets take that!

Last one out tonight.

Kathleen says,

“Wishing everyone the merriest Christmas and a Happy New Year.  Thank you for all your wonderful support you have sent me this year. I cant tell you how much it means to me.  It took until the 24th, but I did get my tree up and decorated.  My brother Drew and his partner Richard did a beautiful job decorating the outside of the house”

Christmas is a big deal for her. She really loves it. She enjoys the food, the cooking, the tree. We dont really do much presents for each other. We are at that age where we truly feel we have all the “stuff” we want (certainly more than we need). It is the company of family and friends that is important now. Although Kathleen did have a lot of fun buying all sorts of little things for her friend’s daughters 🙂

So, where ever you are this holiday season, Merry Christmas / Happy holidays to you. Its been a tough year for Kathleen and I, but our friends and family really helped us get through it.

Back to the chemo this Friday after a week delay.

—Mike

… From Betty’s perspective.

Everyone of course is happy to have Kathleen home!

—Mike

Finally, she is awake! It was hard to see her so out of it for 3 days. Today, was a better day for sure energy wise. We even went for a little walk down the hall. The pain is still there in her gut, but its well managed with meds. Also her blood sugars have gone nuts which is a little disconcerting. Pancreatitis again ? Hopefully tomorrow will show even more improvement. Still on the antibiotics, but no sign of the fever in 24hrs now so it sounds like it was something bacterial. She is definitely better, but I want better still. Hopefully continued progress for her tomorrow.

Thats it for tonight. Bed time

—Mike

4pm…sleeping, so time to write…

Well, expecting clarity is usually wishful thinking. I should however, state up front, I can’t imagine anything more being done for Kathleen. Drugs, consults, tests, incredibly skilled and talented people… All tools seem to be in play. Same with the psycho-social aspect. After a teary talk with the pain and symptom nurse, social worker appears for a chat ‘out of the blue’. But no clear answers as to what’s going on, but its not for not trying.
But really, that’s the way it is more often than not. TV plots tend to have a nicely wrapped, clever resolution. Too bad we are not in the TV bubble.

I got to the Hospital around noon. One of the doctors had already confirmed nothing scary like a perforated bowl in the CT which was the main concern. Good! But then again no obvious answers either. A nurse from the pain and symptom team came up to do a detailed assessment on what could be done to better manage the nausea, pain, fever and constipation. And then a doctor from that team. At a gut level, you hope for the proverbial silver bullet, but its really a process of 10-20% improvements mixed in with potentially nasty trade offs. Zofran could help with this type of nausea, but then its constipating and she is already dangerously backed up… Nabilone ? Causes extreme fatigue and racing heart. Not good when your heart rate is at 135. How about haldol ? Anxiety and depression and zombie like state. Plus its one of those, “Hey we made this drug for something else and it didnt work. But by accident, it works really well for stopping vomiting.” …. And another new drug. An injection that makes you race to the bathroom like you have Norwalk. They weren’t kidding. More like Norrun. A sub cue shot and 30 seconds later, into the WC. Some progress. But barfing at the same time. Well, dry wretching since nothing there to come up. Shot of haldol while on the crapper and then stumble back to bed and a deep, deep sleep. I think it helped. I don’t see a furrowed brow now while she sleeps.

Main chemo oncologist came by too. He is a no nonsense guy. We like him because we feel we know where we stand. He will give us bad news when its bad. If he doesn’t know he doesn’t seem to BS us. We asked about the CT and he said he didn’t see evidence of cancer progression. But some humming and hawing… I guess he is not convinced either way. Hard to say. We also asked about the returning lymph node pain in her neck. Is the cancer getting worse again ? Or is it just a flu bug making them swell. He said there was no mention of it by the radiologist, but he would ask them to comment on any size differential. Didn’t seem alarmed. But not sure if anything phases him. Hopefully its just a flu bug and not the cancer getting bold… When we asked what does this mean for the chemo, he said a delay… Which is a good thing, and means he still sees a point to it.

9pm
Her hemoglobin was down below 80, so main chemo doc ordered a blood transfusion. Thank you anonymous donors. The first time Kath got blood was the day before her surgery, she literally had her lived saved by two O- people who took the time out of their day, to give blood. If you are healthy, please give blood. KW actually is one of the most generous regions in the country. The clinic I go to at Bridgeport and Weber, is actually the busiest in all of Canada which is amazing. We indeed live in a great community!

Fever bounced up and then back down. Good! She will be in at least until Monday, which is a drag, but necessary. She is still technically under infection control so no visitors other than immediate family. I dont get hosed down upon entry, but lots of hand washing etc.

I also wanted to say for both of us, thank you so much for all the notes, pics and support we have gotten. It really does help get through this. Kath had enough energy tonight that I could read everything to her.

Its hard leaving the hospital without her. But it makes it all the more easier to know that amazing people are looking after her. 6th floor, far right

—Mike

I am back home from the hospital now without Kath. A long, long day for Kathleen. She had yet another CT of the specific location with the new pain. Not sure when we will get results on that. I suppose tomorrow. Yes, nervous about that. Kath is pretty well sleeping 90% of the time. It hard to see her like that. So shutdown physically. Because she has an infection, she is at least in a room by herself.

—Mike

Its never fun going to emergency. Of course its somewhat self evident in that you are there because of some emergency. I thought we would be ok if we went at 4pm since all the clinics are still open and being a weekday the family doctors are still about. Yet surprisingly busy. But since kathleen comes pre-diagnosed, its all fast tracked. Took 2min to be triaged and after that we were put in a different waiting room since her white blood cell count is near zero from the chemo and she could not fight off simple bugs that would be flying about in the main waiting area. About 20min there and then a bed. Very friendly staff tonight. I get the sense not just because they know Kathleen is a ‘legitimate’ patient, just that they are nice. While in triage I could hear the nurse assessing an angry junkie. Its a tough job and she was doing her best.
So here we are again in an all too familiar room in emerge… The tables, the iv trees, the hand sanitizer dispensers . I am an information pack rat by nature, but it bothers me that I know where everything is, what everything is. But I guess that helps in a way. Every day in general is a mix of familiar and change. I can do familiar. When Kath gets better, its familiar. When she gets worse with the usual symptoms, its still familiar. But new… that is always hard. So it makes it a little easier to deal with new when much is familiar at the hospital. Less shocks to the system that way I guess. Even sitting here next to kath in an emergency bay is… Familiar. Like a nurse said near the start of all this, you acclimatize
In her cycle, today is normally a low day for her. But new things. A new pain in a new location. Vomiting that we could not control and then a fever. Called to cancer center and they were quite adamant to go in for tests. Either infection or bowl perforation which the avastin (chemo drug) can do. Fever alone can be very dangerous since the chemo wipes out her immune system. So combined with the other things, it wasn’t that hard to decide to go…. Xrays done. More waiting

Update at 11pmHome again! Nothing drastic, but the xray was indeterminate. So more imaging tomorrow and a visit with the cancer center team. Also ran into a nurse that Kathleen had while in the surgical ward who is now in ER. I forgot home kind and amazing some of those folks are.

—mike

Its been an odd path for Kathleen this week. The chemo has generally been much harder on her with each treatment and she seems to go to a much darker place physically just a few days after treatment. But the following week she seems to bounce back better than ever. She had a few days this week where she only had half a bag of gravol which hasn’t happened since the start of radiation back in June…. Hopefully its not an elastic band that will snap!

Emotionally it was a bit of a roller coaster as well. She was glowing with happiness from her visit to her office xmas lunch on Thursday. She misses work and especially the people she works with. On the down side, we went to say goodbye to our friend Paulo this week who lost his fight with pancreatic cancer…. That was a hard visit in many ways. To see Paulo so weak and frail, a soul who was so full of life, was very hard on its own. He was only 40. Ironically he was in the room next to the one our friend Pat was in at Lisaard House — a hospice in Cambridge. It had been a few months since we last saw him and the cancer had taken its toll far more than we could have imagined. There was not a sinew of muscle left on him at the end. It was hard to see him like that but I am glad we were able to see him one last time. Of course the thought crossed both our minds…. Would we one day be checking Kathleen in here as well. Its a very, very good thing there are places like Lisaard House to help us in those final days. I just hope we will be both old and ready.
Chemo day was a long one today. I had sent out an email to my sister saying how Kathleen was almost through the Oxaliplatin without any side effects when…. Oh well. Turned into another 9hr day. But really, pretty uneventful which is better than eventful!

Chemo Window Seat today

office xmas lunch

—Mike