Burning Issues

Its been a tough cycle mentally . Kathleen’s main metric for what the cancer is doing (for better or worse) is how the lymph nodes in her neck feel and look. Its not been good. While they initially shrunk, they seem to be getting bigger in the last 3 weeks. But they are definitely hurting more which takes us back to August when the lumps first popped up. Sometimes the sites where the cancer has spread initially respond to the poison… and then they stop responding. We dont know that for sure, but its not a good sign. As a result, we are going back to the radiation oncologist on Thursday to see if anything can be done to help with the pain. Its a bit tricky to zap around the neck as there is too much going on in that region which could be damaged if they are not careful. But thanks to RIM and a whole host of other generous local donors, the cancer center has some great modern equipment here. We also see the chemo oncologist tomorrow. Of course, we will ask for his interpretation / assessment as well. Not feeling very optimistic. But then again, I think I have become numb to optimism and pessimism to some degree. At some point, I think our bodies dial down the amount of emotion you can feel…. or you just reach a point where you become heavier on the stoicism and numbness. We have to, in order to make it through.

Thinking of this great pic of Kathleen from the summer. She was on a 7 day infusion of 5FU while getting the radiation treatments. Despite feeling crappy and barfy and having a chemo bottle connected to her 7×24, she wanted a day at the beach. It was an amazing day. One of my favorite beach days. Ever. More pics of that day with our friends Jan and Diane at http://picasaweb.google.com/miketancsa. They are nice to look at during this winter spell

.

Round 11 starts Friday if her blood work is OK.

—Mike

Round 10… On a Boat

7:15pm
An even longer round today. Still at the H. Kath’s platelets were technically too low to get a full blast of chemo so the options were delay, or reduce the poisons by 20%. OK, reduction then. Her doctor ordered repeats on her blood work to check if things were going in the right direction at least. They were. Platelets were at 68 instead of 66 from the day before. Although is that just in the margin of error ? What does Nate Silver say? Normal person’s is 150. Cut off is 90 for chemo. Kath has done it at 75. That delayed the start until 11 which means we are here until 9pm. Chemo suite usually closes at ~ 6pm. So as not to keep the chemo nurses for 14hours, we are back up on the hospital ward on the 6th floor for the last few infusions. While people look rough getting chemo, you forget how hard up people are in the cancer ward. Kath looks positively healthy in comparison.
We are hanging out in a room with 2 other people. Its not really like the ward rooms from the surgery section. One of the areas here is totally glassed off to isolate a person and the old gal next to us is in relatively good shape. Relatively. They tend to keep the folks with bowl issues at the other end of the hall thank goodness, so there are no overwhelming smells to contend with. But you notice the difference, or at least your brain tells you its different just on the smell. Not that I am worried I am going to catch something, although I had a bit of a scare when peeing. An alarming colour ?!?! WTF !?!? Oh right, I had a big portion of beet salad for lunch ūüôā No, I worry of course if Kathleen will be here again. not short term. Not due to side issues like infection. Hmmm. I still find it a little hard to write the words. Will Kathleen be here because of the cancer to die in the near term ? Of course the worry is there. I find it better to look and define those dark places than leave them unsaid to fester. Scary monsters are worse when they stay in that poorly defined part of our imagination.
Around round 5 or 6, I remember passing a guy in the hall who was asking a nurse where his wife was. “I got a call saying my wife had slipped into a coma. Is she here, or upstairs?” He was so calm and matter of fact about it. Younger than me. Maybe mid 30s ? I am not there yet. Do you become numb to it all, or do you have some sort of calm acceptance like that? Maybe it was taking every ounce of energy to hold it together. But I remember back last April, I could not even say the words, “Kathleen has cancer” without breaking down. I am thankfully not on the same part of …. I want to say, ‘road,’ but its not a road. More like a spot on a conveyor belt. If it were a road, I would get the hell off at the next exit! Hopefully the belt will dump us out well before where that guy was with his wife.
Two more rounds to go. Kath is a little worried her nodes are getting bigger. Her neck pain has been back a little and she has more tenderness around her liver area when we were meeting with the Pain & Symptom team on Wednesday. But not so much the next day. When its the cancer, it doesnt get better like that. While worrisome, I think we are getting a little better at living with bad signs as it didnt seem to freak us out as much as it used to. I think thats a good thing as it allows us to have some normality in our lives. Although sometimes I think its like the engineer coming to the bridge of the Titanic, “Captain, we have a fire below deck”…. Bigger things to worry about. Actually, we dont yet know if our boat is called the Titanic. Hopefully its called ….”THE LOVVVVVVVVE BOAT”!!! Haha, I put that awful song in your head!
Yes, we still talk and try and laugh about everything. Everything ūüôā

Having a laugh about the Love Boat at the Hospital



—Mike

No Reaction in Round 9…

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.

closing the place

 

 

Looking Over Your Shoulder, Out in the Open

I think one of the first Westerns I ever saw was Butch Cassidy and the Sundance Kid. Somewhere in the middle of the movie, the two of them have to get out of town fast and they head into the bad lands of Utah. Huge expanses under a big sky. You are at the same time exposed and hidden in the enormity of the landscape. The two heroes would ride from ridge to ridge and then stop to look back. They scan the horizon in silence. Are they being followed ? A spec of dust on the horizon, is it them ? Just dust from the winds ? Have a quick watch. You will see what I mean.

I was thinking of that scene today when we met with the oncologist. After a week break from the chemo, Kath is scanning the proverbial horizon. Is the lymph node in her shoulder really bigger ? Is it because of the cancer ? The infection ? Maybe its nothing. It sort of feels like that scene. After all the efforts of the surgery, radiation and chemo — or Slash, Burn and Poison as Kathleen says, how could the cancer still be there. She has come so far, with so much effort, how is it possible there are specs of dust following her on the horizon?
Round 9 tomorrow. White Blood Cell count, platelets and kidney functions all passed so she is good to go. The doctor asked if she wanted to do just half strength to make it a bit easier. Nope, full strength. There are specs of dust on the horizon.

—Mike

And now, a word from our sponsor…

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 ūüôā

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.
DSC_0079

Back to the chemo this Friday after a week delay.

—Mike

Going home!

Dropped in to see Kath on the way to work so I was able to hear the good news from the doctor she can go home today!
As she can swallow food and pills again they are comfortable switching her antibiotics to pill form. So, a work from home day with Kathleen! Betty will be most happy to have her chair warmer next to her again ūüôā

Sleepy Grey Sunday

Had to catch up on sleep this morning so didn’t get over to the hospital until later than normal. Luckily Kath’s mum is here in town and is a huge, indispensable help and presence in our lives throughout this. We spell each other off and she gives the type of care only a mother can. For example she doesn’t jab Kathleen in the ribs when she sleeps too much. I am kidding of course. Elaine does it too. But you know what I mean ūüôā
Kitchener-20121216-00262
I forgot how quiet the hospital is on weekends. Generally no one gets discharged and no elective procedures of course. The emerge department is very much isolated from the hospital so we see none of that here. The oncology ward is also much newer than the old Surgery ward Kath spent 7 weeks in. Where as it was designed with a Soviet era aesthetic, Oncology inpatient is the Ikea ward. White pine wood trim everywhere. It really is quite deluxe in comparison. At one point when we were watching Netflix shows on the ipad, it occurred to me to go get some food downstairs. However, the feeling was reminiscent of being at a resort and heading to the buffet. Seeing the IV tree quickly dispels any such notion, but it was fun to briefly entertain it.
Kath is back on the Nabilone, which is a synthetic marijuana drug. She finds it works well to control her nausea. Biologically it works different than gravol or the other drugs to fight nausea. As I wrote the other day, all drugs have various side effects and trade offs, some worse than others. This one does make her a little stoned. Not that I am saying I did any drugs when I was younger to know, like between the ages of 16 and 21, but let’s say if I did, I would recognize this as typical stoner talk. As she gets a wave of tiredness, a non sequitur might pop up out of nowhere. “Did I loose my black and white makeup bag?”… They are just waking dreams of sorts and all have been pleasant enough for her. Certainly much better than barfing! And nothing like those scary ketamine hallucinations from the surgery ward.
No word on when she might get to go home. Perhaps when they are a little more confident the gut pain has gone down and she is moving things again on her own
Here she is feeling the love of everyone both near and far!
Kitchener-20121216-00260(perhaps feeling a bit of the Nabilone too!)

—Mike

Better

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

Still Somewhat in the Dark

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
h

—Mike

Tough Night

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.
oncology


—Mike

Admitting

It was back to emerge this morning to get the ultrasound. For some strange bureaucratic reason we had to go there instead of the regular admissions process at imaging. Not a big deal but added more time to the process. Again an amazing draw of staff today. Super nice nurses and a very kind doctor. Ultrasound didn’t show any scary things either so that’s good. But….. Always a but. The fever remains as does the pain, fast heart rate (135) and her extreme fatigue. It really has been the lowest she has been since coming out of surgery where she has essentially slept for 3 days. So we have to admit defeat for this round and agree to be admitted to the cancer ward in the hospital. While my amateur bush medic skills can deal with many of the technical yet simple processes, dealing with potential infections and cardiac issues are not part of my skill set. Kath knows it too so she did not protest too much.
She will be up on the cancer ward which is pretty strict about infection and scent control (no flowers, no strong perfume, no one with colds etc). Actually if you want to cheer her up, send her an email with some pics if possible of something “Christmassy”…. And I mean that in the broadest sense of the word. Be that throngs of shoppers at the temple of wall&mart or more traditional religious institutions ūüėČ or snowy winter scenes or a wonderful family picture…. Or even off the wall to the point where it’s not clear if its the drugs clouding her eyes ūüôā
Really, all the emails, blog comments cards are all very much appreciated by both of us. To know that so many people think and care really does help. While we put our trust in science to fight the cancer, the love and support we get from our friends and community keeps that fight alive
—Mike

Back to the familiar and new

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

20121212-201210.jpg

Elastic

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


IMG_20121207_133705
office xmas lunch
IMG_0827

—Mike

Drugs in the Closet

Had a feeling it was going to be a long day. A new anti-nausea drug seemingly shot up her resting heart rate to 120 on tuesday and had stayed there. A check in over the phone confirmed they wanted her to come in for an evaluation today. It was also blood draw day and surprise, surprise, her lines were clogged… With the swelling in her ankles, the Doctor worried about a blood clots going to her lungs which would be consistent with the shortness of breath and very high heart rate. So, yet another chest CT, and xray for the clogged picc line and an ultrasound of her legs to check for clots.
But good news in the end. No blood clot. They are still concerned about the heart rate, so we have to give up on the new drug. A shame, as it did help. So yet another new drug to try. Its in pill form, but its long acting.

Yesterday was a really, really bleak day for Kathleen. We are speculating the Nulasta given so close to the end of the chemo just wipes her out. I could barely get her going this morning as it was a real struggle to get dressed and into the car for the 10am appt. As we suspected a long day, we packed IV gravol in our mini cooler bag. Good thing, as by 12:30 when we were waiting in imaging, the nausea was coming on strong. No where to go, other than the little change room. So, drugs in the closet. The old gals in the waiting room gave us a funny look coming out no doubt wondering what we were doing in there together for 15min. I should have given them a suggestive glance

—Mike

Ringside Support for Round 7

Sheesh, with all the kindness and support people give Kathleen at the cancer center, you would think she would want to come here just for the hell of it. Really can’t say enough about the folks who are there. Just overwhelming kindness, care and concern. Perhaps some of the kindness is because its Kathleen ūüôā I would say yes, but I am biased. They are without exception all amazing professionals and wonderful people. Cancer and its treatment are really shitty, but I could not imagine anything else being done to make it as bearable as possible

It looked like another clogged line to start the day, but it worked out just fine with a few extra flushes.
Another new med today to try and stave off the allergic reaction. So that’s 13… 13, you would think extra limbs would start growing with so many meds, but I am sure its not a record. Still had a slight allergic reaction anyway, but the new drug seemed to make it pretty minimal.
Kathleen is feeling pretty wiped out tonight. She is more anxious than usual about the coming days. The last round really knocked her down and physically its taking its toll. And when you are physically beat up, its hard to stay positive mentally.

It was also a bit of a reflective day. A staff member Kathleen would chat with from her days on the surgical ward dropped by and we were telling her about the 25 anniversary party and how Kathleen and I met. It was neat to dig out some old pics to show her, so I will share here as well.

Below is where we met 25yrs ago. We both lived on the top floor at the Heuther Hotel. The pic was taken in my room (click on the image for a larger version)

In Waterloo Park on the swings

Yes, we were smokers back then

One of the first pics I ever took of her.

—Mike

Checkpoint

Didnt get a chance to finish this post from yesterday ūüôā I have been tardy as of late!

I just realized I never posted since the CT report 2 weeks ago. Chemo day the following Friday was another 10hr affair with a string of complications. Blood test repeat, clogged picc line and another nasty allergic reaction. In the grand scheme of things, relatively minor annoyances. These things happen and everyone at the center does an amazing job to minimize them. But sometimes not much you can do except deal with the issues as they come.
Recovery however, was very, very difficult this cycle. Its been quite some time since Kathleen has been this low energy wise. Feeling just awful and unable to get out of bed/her chair for 3 days. Its a good thing she still has her IV food at night as she ate nothing for a good 72hrs. Down 5 lbs from a few weeks ago.
Wednesday was another checkup with the main chemo doc. An assessment and review of the CT scan. He confirmed the good news in it without any caveats. There was one thing in the report we didn’t understand (a ‘feature’ on the lung). When I looked it up, it implied it was part of the legacy of smoking which chemo dr confirmed it was unrelated and uninteresting. It reminded me of when I had all those back issues and had a couple of MRIs. The first report was a paragraph and the second 2 pages with all sorts of detail with way more dire sounding language. I had the good fortune to be referred to one of the best orthopedic surgeons in Canada. When he looked at the raw images he said there was no difference in his opinion… Same conclusion from his resident and Nurse Practitioner.. Different radiologist, different conclusions, different effort and detail. Its amazing how TV really pollutes our notions of how professions with such vertical skills are uniform. Anything but.
We also asked if the shrinkage was predictive and if it was typical. He said, no, not everyone responds to the chemo with spots shrinking and that it was hard to say where and when things might go. But he said take it as a good thing. We will. We do. Round 7 tomorrow. Kath at least got 3 good days in this week. Hopefully next cycle wont be as rough on her.

—Mike

Everything is Smaller

Finally, some good news. Unqualified good news even! Kathleen had her CT scan on Monday and of course we were anxious to hear the results. We were going to get them on Friday when she had her next round of Chemo, but her amazing GP called to tell her that she got the report as well and wanted to just followup on things in general. We are really lucky to have such a ‘with it’ primary care provider. The gist of it is, is that everything has shrunk or not gotten any bigger. We sort of already knew that as the lymph nodes in her neck felt smaller than before, but it was great to hear confirmation that the ones in her abdomen were also smaller as was the mass on what was left on her pancreas. And of course, nothing new to concern ourselves with. So, progress in the right direction for a change! More details to follow Friday when we see the report ourselves and over parse every last word.

—Mike

Day Pass from the Bubble

There are occasional times when Kathleen forgets she is in the cancer bubble. Its easier for me as the distractions of work take my focus away. But Saturday night was the ultimate day pass for her when we celebrated our 25th anniversary. It was truly wonderful for family and friends to come together like that to celebrate with us. Kath had been coming off a tough week with the nuelastim side effects and she just had such a low energy level. But Saturday night was simply beautiful. Good food, good music, but most importantly good company.
Its been a while since I have seen Kathleen so animated and happy. What a wonderful night indeed

Unfortunately, I didnt have any time to take pictures, so if anyone did, please email them to us at Kathleen@sentex.net


—Mike

Chemo Day

Wasn’t quite routine today. The first time Kathleen had Oxaliplatin she discovered she has an allergy to platinum. I guess buying her nothing but cubic xirconium jewelry over the years hid this little detail. Anyways, not a big deal as it means she just gets some shots ahead of time to deal with the allergic reaction. For whatever reason, it didn’t do the trick and she started to get some nasty effects. First a few hives, then a red nose and her tongue started to swell. On its own, its a little scary. Combined with a double dose of deximethesone (steriod) which amps up her emotions it was kind of tough on her. But amazing nurses. Its not like kath was freaking out, she was just a little scared. They know how to talk in a calming way and once the new meds took hold, all was better again and back on track. They are great at what they do.

Lots of visitors today. Our friend Diane is here from BC to visit and Kath’s friend Maria came to have a quick chat, as well as Elaine. A grey day outside. Kind of nice to watch through the big windows while ‘everyone is dripping’ as the nurses say.

Even with the allergic reaction, all went relatively quickly today and we got out at 4pm. A record. We tried to shorten it a bit by being a little proactive, but didn’t quite work out. Before she can take one of her drugs, she has to give a urine sample to test kidney functions. Sometimes that can be an issue timing wise, so they sent us home with a number of bottles that she could fill in the AM and then bring with her to get tested. Usually that takes an hour, so we thought if we dropped it off at 8am, all would be ready for 9am when Kathleen got there. As I had just finished a run, I thought I could just literally run it over since we are just one and a half km away from the hospital. Parking is always tough, so literally running it over is less hassle. Well, apparently no. In retrospect, I guess it did look a bit odd. 2m tall sweaty man dressed all in black, with the exception of freakishly bright neon yellow running shoes, coming in with a brown paper bag containing a bottle of pee. Normally, they have labels ready for her lab work and expect these things, but they got mixed up with the previous lab work. Plus the person working the desk was new and didn’t know who to call. What I thought would be a quick drop off changed into an increasingly longer parade of people each one making me feel just a little weirder than the last. By the end of it, I felt like I might as well have been wearing a giant purple squirrel suit. I mean, as each person would come out of their office, they would do a double take on me wondering, what the hell is jogger guy standing here with a crumpled brown paper bag. In the end, the secretary did take the bag/bottle, but by the time I got home, they were on the phone with Kathleen saying they could not accept the sample as they didnt know who I was. Oh well. Wont bother next time ūüôā

It was really great to see Maria who was looking so much more energetic than the last time we saw her.

—Mike

Coming out of a Tough Week to a Better Day

Its better. A lot better actually. Last week was pretty rough. The chemo symptoms were lingering and didnt want to go away in the usual time. Then Kath got a sinus infection last Thursday that was really knocking her back physically and emotionally. She usually gets them this time of year with all the weather changes and the furnace coming on for the season. But of course the combo of the chemo and the sinus infection made it pretty difficult. So anti-biotics and some goop to shoot up her nose. Of course the anti-biotics are moving through her guts like a Montreal hockey riot, so a return to the cramps and the WC is once again her favorite room. But then today was better. Her normal voice again, and back to a decent amount of energy. Enough to go to Wellfit and enough to go on a short dog walk tonight in the almost English fog.

But the best news was the positive reaction from the chemo doc this morning and the blood work. I dont think we will ever see him “excited” or “happy” or use words like “cured” … but he did say it was “positive” that Kathleen was “clinically responding” to the drugs. We will put that in the win column. There was some concern her platelets would be too low, but they were good too. So all is a go for her normal treatment on Friday. Feeling better heading into Chemo day is huge for Kathleen. Of course for me too.

Eleven

Thats how many different drugs Kathleen had today. Sometimes she feels that she would fizz and blow up if she jumped up and down. All was on track today. No new drugs, so less chance of surprise and we got out just before 5pm. The nulasta ($2,600 drug from last week) did the trick and her white blood count is great. Platelets were low. 95 and they should be 100. Not a show stopper.

We lucked into the nice corner spot again. Although she looks a little tired in this photo, its more because we had to get up extra early to be there for the blood work.

New nurse again. They are all at least good, and most are great and of course there are standouts. Surprisingly quite a range of personalities too. You would think there would be a defined range as to who is able to work here. Empathetic, but not too much so. Today’s nurse is older. There is a very methodical way about her. By contrast, a young nurse often has a small flash of expression that says, ‘ok, what’s next?’, before taking her next course of action. Nothing of the sort for our nurse. She just moves effortlessly from task to task. An IV program complete alarm here, an occlusion alarm there. She glides from one patient to the other with a steadiness a robot would envy. Ironically, she encourages us to check her work and be active in our medicine, because she could make mistakes. Yet she is one of the more accurate ones. Does all the self checks. Does not cut corners. She walks so much more slowly than the younger nurse from a previous visit, but she is far more organized. Like a smart waiter/waitress who never makes a wasted trip, she fills up free hands with items for later use.

Results of Kathleen’s genetic counselling today. No Lynch syndrome. Kath is happy that her siblings and cousins dont need to worry, but at the same time she was hoping for some answers. I guess you cant help but wonder why, but she does not dwell on it which I think is good.

All in all, a better week than last. Although she had some 3 gravol days, there were some ‘two bag’ days which hasnt happened in quite a long time.

—Mike

A Happy Thanksgiving!

As in wishing you one and it was one. We had a wonderful dinner made by Elaine (Kathleen’s mum) on Sunday and spent today driving around enjoying the fall colors, mostly along the Grand river. Pics at http://goo.gl/zKeW0. Had a spot of lunch at the City Cafe on victoria with some wood oven made pizza. Delicious. We also stopped in to see our friend Jan, who is helping take care of her Aunt.

Some of the symptoms started to kick in from the Nulasta. A bit of ache in her bones, but pretty mild so far. Really, in the context of everything, its pretty easy so far. But even better, is for the first time in months, she was able to start the day without gravol– two days in a row now. I think the last time was 2 days before her radiation started way back in the summer. We are both excited (guardedly) by this….

—Mike

Cancer Aint Cheap!

I am not sure how people do it without insurance. I guess some dont. Kathleen through UofW has an incredible drug plan. Without it… Well, the retirement savings would be gone. Today she got a new drug http://en.wikipedia.org/wiki/Pegfilgrastim to help keep up her whiteblood cell count. If the count is too low, she cant take chemo. So, its kind of necessary. Below is a pic of the receipt. We paid five dollars. If we didnt have the ‘super awesome private drug insurance’ through Kath’s work… Well, you could buy a nice new Toyota Camry for a cycle. Click on the image to make it bigger to see the fine print.
The injection was done in 3 seconds… about nine hundred dollars a second. Eyebrows were raised while jaw was open.

—Mike

Run!

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

Round 3– Blow by Blow

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

Cancer Support

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

Round 2, with the Pit Crew

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

Round Two

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 ūüôā

Dinner at Phoben Thai

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

Taking the night off

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

Dinner Out


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

Flinstones Dance Step

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!)

Arthur Quarry Dance School


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

Round #1

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 ūüôā

—Mike

Fight!

Well, I think the Dr. was more grim about things than I took it to be. Perhaps because I was preparing for worst case. The CT scan confirmed the cancer has spread again. Lymph nodes in her neck (we knew that) and one in her aortic abdomen (we didn’t know). Of course you ask, ‘so in terms of prognosis, what does this mean?’ “When it spreads, its a game changer…” Well, you don’t want to hear that, but then again, it already had spread to her pancreas from before. So its bad, but it was not a surprise.
Can she recover? The Dr. gave an unequivocal “I don’t know”
One thing we do know is that it is possible. From the duodenal cancer group, we know of a few people that are Kathleen’s age and condition who beat this, so its not impossible. Just don’t know how probable.
Originally she was supposed to start next week with the chemo cocktail, but we asked if we could start today. So she did. Day One today. Literally the big fight now. We are really happy Kath started today as we feel we are at least doing something and not giving up.

update: The drugs Kathleen is taking is a combo of 3 called Folfox.  In a couple of months, the chemo Dr. will re-assess and perhaps we could look at Avastin.

 

—Mike

Trying to Make Lemonaide

I kind of hate that expression (if life gives you lemons, make lemonaide), but then again we hate this situation. Still, we are trying to look for some light in these dark places and we do find it sometimes. After that gloomy post, I didnt want to leave the impression that we are sitting in the dark with our heads down. There are of course times like that, but we try and make the best of what we can. Its funny, as a kid, I hated the expression “just as good” which was my mother’s way of saying, “look, this is all we have and we will do the best we can with it.” Thanks Ma, that little life lesson is coming in very handy to cope with all this.

Also coming in handy are the extra pain meds. (Thanks Team Pain!) As Kath is not so worried about popping them like M&Ms its helped her to get a pretty pain free afternoon. Less pain means less clenching of her gut, which means less nausea which means more of an appetite. Once we finished at the Cancer Center, we had a nice drive together to go pick up her gravol order. Blasted a bit of Alice Russel, some St. Germain Electronica and LoFi. Then a walk to uptown Waterloo, and then upto Columbia Lake to play ball with Orville. Another perfect late August evening and thanks to the new pain meds, out of cancer’s shadow for just a bit to allow us to make our own.

—Mike

Lumps

Unfortunately the literal, not proverbial. It seems the source of Kathleen’s shoulder pain are two very enlarged lymph nodes which likely indicates the cancer has spread to her neck area. She also has had trouble swallowing, so there is a good chance something (another node) is pushing against her esophagus. There are probably others below the surface that have been invaded as well. Just can’t feel those. She found the ones in her neck yesterday. Just like that, they were there. The Cancer Centre squeezed us in today with her backup GI Oncologist, as main chemo guy was away. Depending on the scan results, they might add others drugs to the Folfox mix that was to start next week. My guess avastin to attack the (probably) growing tumors, but thats just a guess based on reading what others with this type of cancer have gone through.

So the big CT scan this week will include almost everything from the abdomen and up. This is a very scary set back for her. For me, its tough enough to take this crappy news. For Kath, she has to deal with this in a very physically painful and drugged context. There have been a few nights where its been very tough on her. Up until now there has not been this level of pain at home. Although “team pain” is quite liberal with the meds, they only do so much and frankly she does not want to be on them as they have their own issues. But, its the least worst choice at this point.

So, what does it all mean ? Its really hard to say. Through the Duodenal cancer group, I know of at least 3 other people who had similar lymph node issues post surgery. It was treated with Folfox and they shrunk. Obviously we are hoping for the same results, but we were hoping the 6 months chemo would be to prevent things from forming in the first place, not to battle things on new fronts.

As one of the nurses said a while ago, we need to acclimatize to this new normal… again….

—Mike

Waiting

Hey, I Thought we had a Deal?!?

The early Simpsons episodes had some great moments in them. ¬†The one I sometimes think of is Homer’s take on the 5 stages of grief. (23 second clip, worth a giggle¬†http://goo.gl/sDzOB) ¬†I have been thinking of the “bargaining” stage post radiation treatments. ¬†As I mentioned in a previous post, the nice thing about going through the daily treatments is that you feel like you are making progress. Like one of those old school counters, you feel like you’re moving forward clicking over with each blast. Zap, click… zap, click. Progress. But you are seductively sucked into thinking there is some “deal” or “bargain” with the universe that it will somehow work. “OK universe, I zap the shit out of my guts, and you will make me cancer free and I will be better, right ?” I guess deep inside, I sort of feel that way with Kath’s radiation treatments, except of course, there is no deal, there is no bargain and the universe has no customer service department to complain.
Friday was definitely another low point. Kathleen was one barf away from being re-admitted to the hospital. I wont go into the gory details, but after 24hrs of not eating anything at all, its rather disconcerting to throw up a good quantity of something. After the second episode that morning, she agreed to call the cancer center if it happened again. After the 3rd she did and they said after the 4th, she will need to go to Emerg. Luckily no 4th. Then Saturday, a little better. A little food eaten, a little less pain. A bit more bites of food and a car ride to Sears to get a new vacuum cleaner

Summer walk

Sunday, well, not worse. Enough improvement to go on a very slow walk to enjoy the August evening sun.
Hopefully things will continue to improve like they have over the past 2 days, but if not, well no refunds eh ?

—Mike

Bottle Episode

Aka clip episode, aka recap show.¬† We kind of feel like we are in one right now.¬† You know those episodes on TV where the cast members are ‚Äútrapped by an [earth quake|winter storm|power outage|Alien invasion|in prison|illness] and they reminisce about events past and speculate about the future.¬† Hollywood will do them typically at the end of a season when budgets are tight or if a main cast member is away for whatever reason and they need to be written out that week… So you have flashbacks and clips of previous episodes somehow woven into a ‘mostly new’ episode. Kind of feel like that right now.¬† Not too sick to be in the hospital, but feeling crappy enough not to venture out of the house very much and trapped in doors for the most part. ¬† Thinking of times past and trying to look hopefully to the future.

It was nice to spend the day home with Kathleen today and take her on her errands.¬† She was feeling a little better compared to yesterday.¬† Still, she has some nasty breakthrough pain in her shoulder and neck which is rather worrisome.¬† Her CT is supposed to happen well before her next appt with her chemo oncologist which is the first week of Sept. Will the mass be smaller/bigger/gone on her pancreas ? Is it just a pinched nerve in her neck ?¬† A season one cliff hanger.¬† Will have to wait for the season 2 opener to find out.¬† Hopefully it wont be one of those annoying shows where all is not resolved.¬† Oh right, this is reality ūüôā

Some lovely artwork from Kathleen’s sister

10 Days After

Its been a bit of an up and down week. Last weekend was certainly a low point and things seemed to be getting better for a bit. But then this weekend has been pretty rough and feels like she is back to square one. Lots of cramps, pain and vomiting despite all the heavy antiemetics. And lots of fatigue. She has not felt this tired and sore before. Will have to engage the pain and symptom folks tomorrow to see what they think. Kath is due for another big CT scan some time in the next week or so. If you recall, there was a mass on her pancreas we need to check on. So the closer we get to that, the anxiety level will start to crank up. For now, we are not really thinking about it.

One of the “plus” things about all the radiation treatments I have discovered in retrospect is that it gives you a sense of progress. You sort of feel that with each treatment, you are “doing something” and you make “progress” because in simple terms, you click over that counter. Now that its all done, there is a lot more time to let your mind wander which can be a bad thing some times.

All the emails and posts really do help, a lot. Kath looks forward to each and every one so keep em coming. She loves to hear what everyone is up to while she is stuck in the bubble.

—Mike

Boss Level

Boss Level (b[o^]s l[e^]v”[e^]l): Video game entity. Bosses are usually significantly superior to regular enemies, and are usually found at the end of a level or area.
Kath is at the boss level tomorrow. 28 of 28.  Today was a tough one. Tomorrow, that much more.  But then a break, and new battles after that.  But looking forward to the break and some much needed recovery!

radiation #28 of #28. Boss for this Level

SBP Roller Coaster

Some days are Ms. Chemo and Some days are as Kathleen says, “Slash, Burn and Poison”… Surgery– the original slashing, Radiation burning and chemo… you get the idea. ¬†The last three days were kind of like that. ¬†We did get out for a lovely walk again on Sunday, at Synder’s flats with Orville, but it was a bit far to go.(Pics at picassaweb) ¬†Then yesterday and today have been pretty rough for her breaking out the heavy tools to try and abate the pain and nausea. ¬†She still managed to get the boss level radiation ¬†#1 of #3 today. ¬†A lot of will power, just not a lot of cooperation from her body.

At the bottom of the curve

Two more treatments to go and then a bit of time to catch her breath before the P in SBP starts in earnest.  Hopefully, there will be more days when she is Ms. Chemo than not as she needs to catch a break.

Ms. Chemo

She really wanted to go to the beach, so off we went. Port Burwell. ¬†Kath looks like she could be on the cover of ‘Chemo Today’ with this stance ūüôā

We had a lot of fun at Port Burwell. Kath insisted that she eat some fries from the chip wagon and they even went down well. However, she did go a “Milkshake too far” and that unfortunately came up on the way home. But in the end, we all had an awesome day. Looking at the pics, I should create an album, “Places Kathleen has done gravol”. And to our nursing friends out there, dont worry, we took extra infection control precautions ūüôā We have some more pics at¬†http://goo.gl/IjXkK¬†on our picassa web site

Drugs on the beach


Gut Feeling….

Normal protocol is 25 radiation treatments, but the trend in the US is 28 according to our radiation oncologist. ¬†He¬†couldn’t¬†really tell us how much more effective 28 vs 25 is, but his gut feeling (working hypothesis sounds better) is that 28 if she can take it, is better. … What is ‘better’ ?…. ‘better’… Hmmm. ¬† Considering Kathleen’s gut is feeling worse with every treatment, every day is getting harder and harder and she has to consider is the damage being done less worse than the potential for the cancer to take hold. ¬†Yesterday morning was a bit of a scare as she threw up either old blood or bile. She hasnt eaten anything of quantity since Saturday, so it wasnt food. ¬†Something that looked like cola syrup anyways. ¬†If its 25, Friday is the last day. If its 28, a week from now. ¬†The oncologist warned us that the last three are indeed tough and scaring, which doesnt even show up for a good 3-4 weeks after the last treatment, can potentially cause a blockage in her bowls– 1 in 100 vs 6 in 100. ¬†Monday is a holiday, and she can opt out if need be Tuesday AM. ¬†But for now, she has her eyes on 28 and will do what it takes to make it through.

Gutfeeling

Olympic Distractions

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!

“Hello, this is your Surgeon Calling regarding the new mass on your pancreas”

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!

Saying Goodbye to Garry

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.

I’ve got Drugs in my Pocket, and I Totally Know what to do with Them!

Well, technically, they were in the cooler and they are just gravol ūüôā ¬†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

Chicken on a Bun

Its a great metaphor. You got your chicken and you got your bun. Simple. Its like the mini-speak of food. Today was a chicken on a bun day, where we felt like we were outside the bubble for a bit to enjoy some simple things again. Another dose of chasing normality. Up at the Waterloo farmers market with our good friend Jan from BC and enjoyed, yes, a bit of chicken on a bun. Just a few bites for kathleen, but its something. She even had the smallest nibble of an apple fritter. Afterall, you can’t go there without having one. Success. It didn’t even matter that by the end of the trip her stomach was reminding her that it was time to go back home to drip IVs and fighting nausea, we got a dose of chicken on a bun and it was very nice indeed

Who would have thought plain and bland could be so awesome


Amazing how looking at stuff, perks up Kathleen!!


Lone Star

I feel I shouldn’t like anything about this building but I do really enjoy the design. Good architecture stands out and ‘says something’. Great use of space, lots of natural light– spacious but comfortable. It honors the past, but is not stuck in it. Where you enter, is an enormous wooden door that is supposed to evoke a traditional barn motif. Subdued in theme, so that if you think about it or its pointed out, you see it. Its not the hit over the head kind; its still contemporary and not kitchy.
There is also a subtle quilting theme throughout– more like stylish buttons on a jacket as opposed to the whole coat. Although treatment rooms have numbers (she is always in 4) they also have unique quilts for each. Kathleen is in “Lone Star”… Sounds auspicious if that means anything. Not sure why. Regardless, I like the name and the piece is very nice and it connects to one of my fav movies “Lone Star’ by John Sayles. So there you go

2pm
Longer day today than we thought. More problems with her picc line. Stuff goes in, but blood does not come out. Might be a clot at the end, or a split line so it will probably have to be replaced… But not today. Normal procedure is to do a chest xray to check positioning first, but she has had so many that she would probably set off radiation detectors at the airport. So blood draws via needle for a bit.

New chemo Dr today. Not sure if main guy is on holidays, or we got shunted over to her. Seems pretty competent. An Oncology prof at McMaster and I guess she covers during holiday season. The nurse asked if it was permanent. Really? Not sure. But she explains things well, so if it were, that might be a good thing. But then again she is not a GI specialist.

3pm
At UofW’s wellfit again. What a great program this is for Kathleen. She really does walk out feeling markedly better than when she walked in. The trainers who work with her are all super friendly and hearing her laugh and chat with them is… Well, its really good to see that. Its a welcome bit of ‘other’ as in anything other than cancer and cancer related matters

Fighting the Fatigue