Hammer Time

As in after “Break Time”, not the parachute pants wearing MC. (Yes, age specific allusion). Time to hammer her system with chemo once again. She is anxious to get back as she feels she has made gains against the cancer sites with the last CT report. Although Kathleen does not regret taking a week off, she doesn’t want to delay any more. Its a difficult decision to make. You have to balance off between killing your whole body with toxic chemicals and giving it all a break. But you cant be selective about what gets the break and what gets the toxic soup. The cancer cells also get a chance to regroup with time off.

Its been a bit of tough week for Kathleen on the pain front. It has not been under control really. We had a meeting with “Team Pain” yesterday. They really are quite earnest in their efforts to help Kathleen try and control her pain and symptoms. The doctor we meet with takes great care to explain to us the reasoning behind his plan of action. I appreciate how he takes the time to make his case to us where some doctors might say, “take these pills, see you next time”, he takes the time to elaborate his thought process in great detail as compared to some doctors we have dealt with. But, the limits of science and medicine are the limits and they can only do so much. Plus, its treating the symptoms, not the elusive cause. She has been on a new pain med, lyrica. Hard to tell if its working. Its not solving the issue of course, but you cant tell if it would be worse without it. Unless we had a control Kathleen (a double entendre there– ‘control’ and ‘kathleen’), we cant tell how effective it is. Its quite possible she would not be able to function without it, or it makes no difference at all. Hard to say.

You can see from the pic she is pretty tired, but the amazing dinner and desert Jan and Elaine made really cheered her up. Sleep has been hard to come by for her at night. A series of unfortunate events as well has kept her up. Two nights ago, a neighbor’s car alarm kept going off through the night. I went out to check, the poor guy was in his housecoat trying to pull various wires without luck. Add some early morning emergency gravols for nasty cramps and near vomiting and it has made for a long week for both of us.

So here we are again, in “Q” bay.

You can see the effects of the lyrica and the new type of subcue ports on her arm with the bruising. More side effects to the side effects to consider.

And now back in the chemo cave with her guardian cat

—Mike

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Chemo Holiday

Pain is much better under control this afternoon and feeling mobile enough to go out for a coffee with Jan at the Nougat. Always a perfect place to enjoy a fine black coffee (me, Jan) and tea (kathleen). Thanks to Jan for taking this photo!

—Mike

5 Comments

Break Time

Couldnt do the chemo today. Platelets were too low and Kath still has not recovered from the previous cycle. The doctor actually was going to allow her to go ahead as it was borderline, but she chose not to. I think it was a good idea. The back pain is still out of control…. Bloody nose, sporadic fever for the last 2 days… Way too much going on to get beat back again with the FOLFIRI into the chemo cave. Will try again next week after she hopefully can recover from the previous cycle.

We had to wait around a few hrs for cathflo to unclog her PICC line again today. (Its funny, I always hear it as Kath flow). So nice to be out in the sun. We are lucky to have our friend Jan with us again

—Mike

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Looking Up and Looking Down the Road

It was generally a positive meeting with the doctor to review the results of the CT scan. He didnt think the spots on her pelvic bone were mets. Just a denser area for whatever reason. Thats good news… But the bad news is no quick fix to her terrible pains via radiation. Instead, more drugs (Lyrica) to try and treat the symptoms. The 4 mets in her lungs have shrunk to the point where they were not visible on the CT, but the doctor wanted to make it clear, they are almost certainly still there. Shrunk, but still there like some cruel sword of Damocles that will follow her around for the rest of her life. Its odd how we all have such a sword over us. But until you look up to see it, you live in blissful unawareness. But once you see it, you can never forget it is there. So, the sixty four thousand dollar question is of course, what does it mean. For now, its stay the course. The Doctor wants to do 6 more chemo cycles, and then Kathleen can take a break. And by break, he means just that. CT scan 2 months from now and then 2 months after that. If things remain small, then another 2 month reprieve. If not, back on chemo. Repeat– more life in the chemo cave.

In some ways, today felt like snatching defeat out of the jaws of victory for her. “We won this round!!! … Wait, what exactly did she win?” She was generally pumped up at the prospect of a positive report, but instead the meeting got refocused in a way she didnt quite expect– talking about the long term. It seems like its been so long since we thought about anything long term and looking down that road is frankly quite scary for her, for us. We know we are on that long cancer road / cancer support road, but frankly, you kind of get used to trudging along, looking at your shoes as you move forward with the odd glance to the left and right of you when the scenery warrants. But raising your head and looking down the road ? Thats a “holy shit, how the hell am I going to do that?!?” reaction. This has been a particularly hard cycle for Kathleen, and the prospect of doing this for the rest of her life is a bitter pill to swallow to say the least. “One day at a time” flips back and forth between infuriating trite cliche and mind saving mantra. As her friend, I dont know the answer. I dont know how to help her through this part of the road, nor does she know how to help herself either. But then again, these are heavy philosophical questions that are meant to be constantly asked, never to be answered with finality.

Chemo day tomorrow potentially. But I dont think it will happen. Kath just doesnt have the physical strength to do it right now. My guess is it will be delayed a bit to let her recover.

—Mike

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Enjoying Spring

Good weather helps so many things. Just the ability to get out and not have to do the whole winter production of boots, gloves, rain paints etc, sure makes a huge difference. Then, having bright warm sun…. Well, thats a major bonus.
We thought we would start by trying the lunch truck in Uptown Waterloo.

Not too bad. But location was everything. Being able to sit out in the sun without a coat on was simply amazing!

Although the wheelchair is pretty comfortable, its mostly an indoor one so we need to get something with a little more cushion and better wheels.
She is still not feeling too well. Her back is giving her a lot of pain and her gut is still recovering from the last chemo treatment. But, we got out to enjoy the day and that helped a lot

—Mike

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Peeking Ahead…

We were to hear the results of the CT scan next week, but copies went to our GP, who kindly gave it to us. And the results ? Well apart from the color of the print and paper, its not black and white. On the very good news front, the mets in her lungs do not seem to be there any more!! Thats really good news! Also none of the existing nodes had gotten any bigger. The heptic duct and pancreatic swelling are still there, but no different in size. On the bad news front, it seems to have spread to her peritoneal cavity as there were evidence of Ascites. Thats potentially bad. The other confusing thing is that the radiologist (same one as before even) wrote, “a few small dense lesions in the bony pelvis are stable since the last exam”….. Ummm, what lesions?!?! There was no mention of them in the last report! If this is the case, this might be the cause of Kathleen’s awful back pain, which has been getting much, much worse again. Radiation in theory could zap that spot much like it did with the node in her neck and bring her pain relief. This would be good. The other new thing were “polyps in her maxillary antrum (Sinuses)” That could be something simple like the side effects / scaring from the Avastin…. So, what does that all mean ? Have to wait until next week. Like this crappy weather, its too grey right now. But, we are hanging onto the news about her lungs. Hopefully the rest will follow. Fights not over… Never is.

—Mike

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One Year After, and Tests

It was a year ago Saturday. It was supposed to be a case of gallstones. A quick 30min procedure, 2 days of recovery and Kath would be back at work and hopefully feeling normal once again. Instead, the bottom fell out and Kathleen would be in the hospital for 37 days. Its been a tough year.

As the day approached, Kath didnt know how she wanted to mark it. “celebrate” ? Doesnt seem quite the right word. A friend of ours had many great suggestions in terms of marking it in all sorts of ways. Something over the top, something somber, something defiant ? We opted for something very pleasant at Nougat.

Fittingly it was a chemo weekend, so Kathleen along with her pain pump had her chemo bottle attached to her, went off to mark the day at Nougat. She takes it in stride. Despite having all the crap connected to her, she does her best, and it was a lovely afternoon.

So here we are one year later.
A reference to the old Timex commercial….

She always looks great to me.

Young and not so young around us.
Photo 2013-04-20 2 54 22 PM

It was a really wonderful way to mark the day.

Today however, was a stressful day for Kathleen. Its that time again– time for another full CT scan to see what the cancer is up to. New sites ? What about the old sites. There is the node in her neck that was zapped with radiation, 2 in her abdomen and of course the 4 small, but defined mets in her lung and the troubling signs in her liver. Results a week from Wednesday. Stressful waiting.
Had a funny moment in imaging. The nausea was getting really bad just prior to her CT so we had to do some gravol ASAP. Kath was in the wheel chair so we couldnt go in the closet like last time. I primed the tubing, flushed her line and then looked where I could hang the gravol. Nothing…. Hmmmm, I needed something tall to hang it on

A mobile tree.

—Mike

9 Comments

Running After Normality

It was race weekend for me. Two, back to back. A 5k in Elimra Saturday night and an 8k in Cambridge this morning. Kathleen has never been into running, although we both used to walk a boatload together. 3k in the morning with Orville and about the same at night. Then, longer hikes on the weekend. All seasons with 2 dogs. And before that when we were students, on our bikes for, well everything as we had no car back then. I would have thought running would be a natural for her, but it was never her thing. However, she would always come out to my races to cheer me on. The last few she was too ill to come, but she was determined to be there for these.
Saturday went really well for her despite having an awful sore throat. She was able to be at the start and finish line. However, for today’s race, she had to make a quick dash for the car for gravol. Almost didnt make it, and the big house people of Brant st. were wondering if she was some junkie shooting up in the passenger seat Kath was really upset that she wasnt able to be at the finish line for me. The opposite for me. I was thrilled she was even able to come! Today’s race had some nasty hills at the end — I loved them and all I could think of while running up for the last bit was this was a million times easier to do than the effort she had to put out just to walk up the hill to where the start line was! You can see the route here

Combined with the pre-race trip to Nougat Bakery yesterday (Our favorite cafe), and then post race trip to the mall for some browsing, it was an almost ‘normal’ weekend for us. Hopefully with the weather getting warmer and brighter, normality will be a little closer yet.

Looking at fabric for my sister

Warming up cold hands at the start of today’s race

—Mike

6 Comments

Frequent flyer club (Collect them all Kids)

Well, back in the imaging department again. I think she now has a complete collection of every medical image possible. Like all the other wards we have been through, wonderfully kind and attentive people as well.
Originally they had scheduled Kathleen’s PICC line to get fixed on Wednesday, but her main chemo doc said no, ASAP. So it’s now, not tomorrow. My sense is that if he had a time machine he would make it yesterday.
Dealing with mortal issues are hard enough on their own. Having worries such as “how will I pay for my meds”, “Can I afford the treatment”, and, “am I getting the best treatment I can reasonably get”, are worries we do not have. They would just make everything that much worse. Having main chemo guy personally call and make things happen… Well, that just makes you feel special
So, here I am yet again in the hallway from “hanging in”. It’s end of day so the hallway is quiet. Just the people who they are squeezing in like Kathleen. But all i hear is that familiar building hum. I am not really worried about the PICC replacement, but it’s technically a surgical procedure and there is some worry that with her line being in for such a long time might mean there is scarring and it will be tricky to remove. Added to the fact that it was just a year ago when gallstones turned into worst case scenario against the odds…. Well, there is always a bit of worry

Later

X-ray on… So they are working on her.10 min in. Hopefully her back is not too bad.
…
20 min in. Normally a 25-30 min procedure.
And done! It worked! Small issue around a valve in her chest but nothing big!
Issue resolved, trouble ticket closed

8 Comments

Technical Difficulties

We missed a rather big headache by pure chance. We were at the hospital all day last Wednesday for an appointment as well as to get her PICC lines unclogged. This involves adding just the right amount of cath flow (I always think Kath flow) into each line so that the line is filled with the unclogging solution, but none gets into her system. It then has to sit an hour, and then it gets pulled out, not flushed in. If it does not work, another dose and sit for another 90min. In the past we never had to do the second round, but did this time on line #2. I guess it did a little damage to the one line because it started to leak Saturday night. The lucky part was that it was not the line the chemo bottle was attached to. If that leaked, we would have to dispose of everything the solution touched. So couch cushions, clothes, carpet, etc. A quick call to the nursing team confirmed we would have to go to emerge to get it replaced.
Its considered a surgical procedure that is highly specialized. We figured we would be there all night. However, before we left for ‘germlandia’ (aka emerge waiting room), we thought we should actually call the oncology team and speak to one of the doctors to confirm that they would actually do this. Turns out, they dont on the weekends. The person who does it (intervention radiologist) was not around. So if we did go, they would just disconnect the line and pull it out. Not good, as Kath doesnt want to lose the chemo treatment. The doctor on call just happened to be Kathleen’s main chemo doc, so a bit of further luck as he said he would try and see if he could get someone in on Sunday. But that didnt work either. So probably another full day at the hospital Monday.
Not a total bust this weekend as we made it to the Maple Syrup festival! We didnt brave the crowds on the midway as it would be a bit claustrophobic for Kath in the wheel chair. But, we did get our pancakes! We have been going many years now, so it meant something to be able to enjoy this one more time.

—Mike

8 Comments

in the cancer bubble

… with Kathleen

Hammer Time

Chemo Holiday

Break Time

Looking Up and Looking Down the Road

Enjoying Spring

Peeking Ahead…

One Year After, and Tests

Running After Normality

Frequent flyer club (Collect them all Kids)

Technical Difficulties

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