Reason #983….

… on the list of why I love Kathleen. She can still share a laugh even in the shittiest situations. Last night was a constant barrage of nausea and vomiting… Often it would just be a deep burp, but you never knew. The PSW and I were sitting on either side of the bed, somewhat anxiously waiting for the next time…. Barf or Belch? Then, cutting through the quiet like a bull in a china shop, Orville on the couch let out 3 seconds of “BUURRRRRRRRRRPPPPP“. We turned in awe at the shear volume of it and Kathleen said, “Excuuuuuse me!” All three of us just laughed and laughed.

In the continuing shell game of symptoms, the vomiting was better controlled this morning. She had a bit of challenge swallowing and keeping her heartburn med down, but eventually managed to. The doctor found some sublingual versions that will allow her to just metabolize it in her mouth and not have to worry about swallowing. But then the horrible back pain returned. Our friend Jan had to use every trick in the book to get her comfortable and now has been sleeping since 11am.

Sometimes it feels like some terrible Greek fable where the central character has to pick 3 afflictions from a list to endure. Not like there are “nice things” on the list.

Vomiting
Profound Fatigue
Constant Nausea
Intractable Pain
Fear
Delirium

Pick three. But when its just physical, her presence of mind is quite amazing. Last night was like that. She was tired, she was barfing up any bit of water she would swallow and in some abdominal pain…. Yet she could still laugh a little, and still try and enjoy a few more moments together.

—Mike

5 Comments

Hospice at Home

So far we are making a go of it at home and havent yet had to think about hospice or hospital care. Kath is at a stage where she is really loosing muscle and fat. She sleeps a great deal, but when she is a awake, she is pretty foggy and weak. Occasionally, the feisty Kathleen we know and love pokes through. When her mum and sister and I were trying to understand her, we had to keep asking her to repeat what she said. Finally, in exasperation she ‘yelled’, “I have 3 deaf people looking after me!” We all laughed, even Kathleen a little. But those moments are fewer now as she slips away from us.
As she now has a hard time swallowing pills, its a little more difficult to control her back/hip pain. Also there is a lot of diarrhea to contend with. On the plus side, we found a massage therapist who works with lymphodema patients in the home. This has managed to reduce the swelling in her legs a decent amount in order to bring some relief.
Her sister Mel, is with us a few more days. She has been a great source of love and practical help for us all

—Mike

14 Comments

Family Days

We have had many great visits over the last few days. Kathleen loves to see people, so dont be shy. She is upset with herself when she is sleeping, but I assure her people are not angry with her for resting. The pain is much better controlled as of yesterday. Anecdotal as well as empirical pump numbers show she is using a lot less of the heavy traditional pain meds and instead leaning on Tylonol and a special type of Advil that is much more gentle on her GI tract. She was able to sleep through the night without any pain crisis waking her. Its not completely gone but its for sure better. Hopefully we can titrate down the nasty stuff a bit so she is not so out of it and still be relatively comfortable.

Richard, Drew, Me and some random lady

Jacob, Evey, Jordan, Marlee and Leia. The kids sang “International Space Station” and brought some wonderful coloring over to cheer Kathleen up. They have been like a tiny greek chorus to remind us of what can be bright and beautiful about the future at many points along Kathleen’s cancer journey.

Kathleen’s sister Mel from Montreal with Elaine. Lots of smiles and happiness.

Kathleen’s brother Don and her sister-in-law Bonnie

Sleeping under Jordan’s magic princess

—Mike

4 Comments

Fighting

It was hard to leave the hospital for a number of reasons. For Kathleen, tearful goodbyes for one. People she will never see again. Ever. As in the big ‘ever’. For me, it was like leaving a supportive family. There were so many young nurses who treated Kathleen as a beloved aunt, and so many older nurses who treated her like a treasured niece. And for me, just overwhelming kindness and respite. I remember coming in last Sunday morning, and the nurse who was Kathleen’s “constant” (when you have to be constantly monitored, the nurse assigned is called a “constant”) had turned down her sheets and arranged her pillows so perfectly and lovingly, I was expecting to find towel art like at one of those fancy Caribbean resorts. You know, a fresh bath towel origamied into a swan? There were a lot of tears shed. Seeing the hospital retreat away through the back portal window of the ambulance taking us home only added to the defined intensity of the moment.

I was thinking a lot about that guy from back in November who I happened to pass in the hall as he casually asked the nurse, “You called and said my wife is in a coma. Is she here or on the 6th floor.” I cant even remember what he looked like now, just the unphased tone in his voice. Its probably been a few weeks now, perhaps a month where I have become that guy. I know Kathleen is going to die soon and it no longer terrifies me like the way it used to… Same with Kathleen to a different degree. As with each new step along the way, we acclimatized. She literally was placed into her death bed in the living room today. We both cried, but not that much.

Twenty minutes later, we were on the side deck, enjoying the sun and having a bbq with family and a friend who Kath was roomates with last February in the hospital. I was tired and didnt really want to do it, but Kath insisted. It took a good 15min just to transfer her out of the livingroom bed and into the wheel chair to get out to the side deck. But reflecting on it after, the BBQ was a profound reminder of what life is for me. Its finite and you must fight to live sometimes. And I dont mean hold on for the sake of holding on– struggle to make the best of whatever situation you are in. Look for light in those dark places. Make friends and relationships no matter where you are and how you are. And entertaining family and guests 20 min after being placed in your deathbed ? Thats the amazing fighter I have known and loved for almost 26 years.

—Mike

13 Comments

Clot

After about 20min of waiting, I knew that this time they would actually find a blood clot. Kath has had swelling in her legs quite a few times in the past year, but each ultrasound came clean. 10-15 min was all it would normally take down in Imaging. Another new drug now. Even the hospital pharmacist had a “now what” look on his face when I went in with the tell tale white slip of prescription paper. Great pharmacist who is really into what he does. Fragmin. Appropriate name for something to deal with clot busting.
The danger with the clot in her leg is of course it could move into her lungs or elsewhere which would be fatal if not treated very quickly. But with her platelets dangerously low, she has various bleed concerns. When the doctor came in to see us, I had the “No, she is not being admitted speech ready.” I think he knew it would not wash, but the price to pay is we have to go in for daily blood tests for the next few days and wait around for the results. OK. A deal. Oddly enough, it wont effect chemo on Friday. If her platelets are high enough, she can do it. They were 46 today. They have to be 75 or better for Friday. We will see. They did bounce back from the 50s last time, but never this low.
Her pain is not getting any better. Yesterday, we had a RMT come in to see if that could help anything. Perhaps a little, but he warned she might feel a little more pain in the short term. It was a pretty bad night for her.
All in all, quite discouraging. Sometimes I look at her as she sleeps in her chair next to our bed, I dont know how she gets through it. Its a comfortable chair, but its still a chair. To me, it seems like sleeping in an airplane seat for 180 days. Add in the pain, and the cancer and the side effects of the cancer, its been pretty shit for her. The odd bright spot. Last Friday for example was a relatively ok day. We were able to go out to Zhers and a few other errands. We also had a nice birthday cake with Elaine and then yesterday a nice meal out with her Uncle Merv and cousins Chesea and Lisa. But those bright spots seem to be fewer and shorter than ever. Not really looking too far down the road. Just taking one day, sometimes one hour at a time.

Birthday Cake with Elaine

Birthday With Merv, Chelsea and Lisa, Jan and Elaine

Fun emails (cute animal pics from Bonnie)

A bit of ‘photo booth’ last week at the hospital. Still get to kiss my sweetie

—Mike

8 Comments

Hammered

Its been a tough two weeks for Kathleen. More pain meds… New pain meds… New doses of pain meds. Pain Crisis… Common word, pain. She pretty well has to use the wheel chair full time as standing or walking around is too painful and just wipes her out.

She did have one amazing night out on the previous Wednesday. Kathleen is part of a local service club (Zonta International). She joined it a few years ago because she wanted to give back to her community, but not just locally as she liked the international aspect of it as well. She also respected very much the way the work was done and how dedicated and committed the women were. When she got sick last year, she had to give up her participation with the group, but the group certainly did not give up on her. Throughout, the women of Zonta have continued to reach out to Kathleen and its been such a sustained source of support for both of us. All the phone calls, visits, flowers, cards, emails, blog comments add up to such a foundation of support. So, it was an emotional night for her, to say the least, when she attended her first meeting since her initial diagnosis.

It seems the pain free moments are fewer and fewer for her and there have been some awful moments. Her primary pain med is via sub cue and it tends to get blown faster than it should. When that happens, the pain meds just accumulate in the tissue un-absorbed and she gets in a world of pain like Wed night. Changed the site. Fixed for now.

I haven’t been posting too much lately. In some ways, “nothing new to say.” Things are just hard. Our friend Jan is here still and that is an indescribably huge help. But she does not have the magic cancer-be-gone wand either. So its more of the same for Kathleen.

Chemo day today and back to the chemo cave. It almost didn’t happen as her platelet count was 58 yesterday. Had to re-do the test today. 76. 75 is the cut off and even that is a pushed value. Its hard to look for the light in the cave. But the love and support that our friends and families give us certainly are a huge help in finding those moments. ‘Thank you’ seems so inadequate, but thank you.

Some pics from the last 14 days.

In front of the Apple Tree

Enjoying the hot weather on the long weekend

Wonderful brunch with Jan, Elaine, Bonnie and Don

Shoes of love 🙂

Visting in Q-Bay on Chemo Day

—Mike

13 Comments

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

4 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

1 Comment

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

7 Comments

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

Day by Day, Angela Merkel’s Purse and ‘We are all in this Together’

Its round fourteen today– round 4 of the FOLFIRI. Kath is napping post benadryl, which is one of the drugs to deal with her allergic reaction to one of the chemo drugs. Like last time, her Wednesday platelet count was too low, so repeat count again this morning. Sixty Four on Wednesday, 90 today. Good enough. Kath was hoping to do full strength chemo, but chemo doc thinks it would knock her back too much. Eighty percent again. Still, its full strength for what her body can take.
We are approaching the 1yr ‘anniversary’ of her diagnosis. April 20th, 2012. 2012, cancer year. I dont want to say a shitty year, because, well, we had some beautiful moments in there too, that despite the horrible context of cancer, I would not want to forget nor give up. Our day at Port Burwell, our 25th anniversary party, our gallium waltz. There were still some “our” moments in there and there were still some of those wonderful simple moments we loved. Coffee at Nougat on Saturdays and just enjoying each other’s company.

I am not entirely sure why I don’t think much about the anniversary. I think partly because we are so focused on living one day at a time. That’s part of the price though. When you do live day by day and in the ‘now’, you by definition have to give up the long view, both forward and I guess backward. If you look too far down the road, it becomes overwhelming.

I remember last April looking through some 2,000 emails in the duodenal cancer mailing list archive to see what might be in store for Kathleen. A woman, not much older than Kathleen, suffered through daily nausea and vomiting for some 6 months before succumbing to her disease. It was early on and vomiting was a *constant* issue for Kathleen and that was in the hospital. We didn’t have all the tools at home like IV gravol. We didn’t even know we could get IV medication at home that we could self manage. “Holy shit” I remember thinking to myself. How will she get through that ? Now we have the “club pack” of IV gravol in the fridge among other meds and we could probably start our own reality TV show, “Medical Supply Hoarders”– “You can never have enough saline flushes!” would be my tag line. We even have an ‘upstairs’ IV tree and a ‘downstairs’ IV tree. The upstairs one even has a ‘headlight’ on it so she can go to the bathroom at night. You adapt. Its in all of us actually. Adaptation that is. Some much appreciated advice I took to heart from Anne P, early on. There is more strength in us all to get through these things than we know.

I look around the chemo suite today and its the usual cross section of people. Everyone from hard scrabble construction worker with tattoo sleeves to someone who looks ready to chair the CIBC annual shareholder’s meeting, and everything in between. Everyone gets the same first class care and there is something comforting about being a part of that cross section. — Note, Kathleen gets better than first class because, well, she is Kathleen 🙂 Its not the rich people’s ward, or the ‘university educated ward’, its everyone from your community. There is something comforting about it that makes you feel a little less alone. Whatever the reason you get it or who you are, you are all there together. You draw on your own inner strength, but also on that community you are in. Thankfully, we are in a really awesome one.

Overall, this was a much better chemo round. I think the ring side judges would score it 3-0 in Kathleen’s favor. She had a great Easter with her family and via wheel chair got out to do her retail therapy at the mall with her brother Drew. As an added bonus, she finally found Angela Merkel’s orange purse at Winners which she was totally excited about. A few years ago, while at some G-8 meeting, there she was in her obligatory dower grey suite with all the other grey leaders on the BBC. But, when they got up from the table, Angela whipped out this bright orange purse that screamed a bit of defiant style, which Kathleen immediately noticed and remarked upon! So, when Kath found it trolling through Winners, she was most excited!

Four weeks from now will be the next scan. We will worry about it then and enjoy now as much as we can.

The purse

Chemo day

—Mike

6 Comments

Stumbling to Round Three

9am
It was rough week for Kathleen. The pain got very much worse on Monday and continued in unmanaged territory until it got a bit better on Wednesday when they adjusted the dosage. We saw the pain and symptom team, and we have every pain killer available to us. The challenge is that none seem to work for this sort of back pain. Next step is the physiotherapist who helped me with my back issues a few years ago to see if there is anything she can do for Kathleen. Thats Monday.
11am
Chemo day again today. There was some worry that her platelets would be too low as the number was 67 on Wednesday and as a result, we had to go to the cancer center at 9am sharp to repeat the blood work. Kath was pretty anxious about it. She is already in low odds territory and if she had to delay another round of chemo it would just make a bad situation worse. 75 was the cutoff and they bounced back to 81. So another blast of FOLFIRI.

4pm
Bracketed somewhere between the extremes of life and death, we have agency to effect our lives. When you are young and healthy, you have a great deal of potential control over your fate. Not so much when you have cancer. What once presented itself as doable, is moved out of your purview. You do the best you can with what you have, but, every day more and more is taken away from you and whats left is more difficult to work with. In the past Kathleen could adapt to the new rules of the game, but lately it seems the rules are being changed on a daily basis. Thats one of the hardest things right now. Kathleen’s world that she has agency over, is getting smaller and smaller and harder and harder. For a woman who has been so very independent all her life… Well, difficult is an understatement. Simple things like the fact that we always took the stairs to the second floor where the appointments are– now she has to take a wheel chair in the elevator. It’s a hard thing to get used to, but it’s no longer in her control to change that.

That being said, we still managed a trip out the night before. Our good friend Diane has been here this week being a tremendous help fixing up the bathroom to make it accessible for Kathleen. With the wheelchair we managed a short trip out to Home Hardware to look at fixtures. It was a small thing but a big thing in her ever shrinking world.

It is uncomfortable as it looks 🙂 But Orville is happy to be with Diane.

Betty spends a lot of time with Kathleen on the blanket her friend Maria made for her.

—Mike

9 Comments

Foot Heads Arms Body

Despite the chemo brain and the heavy pain meds, Kathleen was able to decipher the odd news headline above. Foot Heads Arms Body– a guy named Michael Foot was put in charge of a nuclear disarmament committee. Foot Heads Arms Body. Clever. But even better is she is finally coming out of that dark place she calls her chemo cave. In that darkness, you do actually tend to see your body disassociated from yourself. Feet hurt and are swollen. Head is foggy and cant stay awake. Body aches and cannot move, but is not comfortable in its lack of movement. Same with the cancer. Its not part of ‘her’ but ‘other’. The cancer wakes us up at 3am. The cancer keeps us away from some fun sunny destination in the winter. The cancer steals life from her. But now, a little bit of energy to putter to the kitchen and enough to watch a bit of TV and browse the internet.

For me, the lack of sleep is irritating. But thats fixable. The hard part is seeing Kathleen so weak from the cancer, the drugs and the side effects of the drugs and the side effects from the side effects of the drugs to address the side effects. Its a lot of balancing, and in the past we have managed to keep all the balls in the air for the most part. So when she had the horrible vomiting, as someone who is in a support role, you take it as a bit of a failure. Its not like I am going to cure Kathleen of cancer, but you have to afford yourself the little fiction that you have some agency and control in the process to at least limit the symptoms. To some degree anyways.

It was a rough cycle on her, but she thankfully seems to be emerging from it today. All the parts are a little more whole again and not split into feet, head, arms and body. Its Kathleen next to me in the living room.

Some distractions below. I unleashed the brain teaser game “4 pics, 1 word” on Elaine, and Kathleen checking her mail with Betty helping along. Orville is happy to be on the couch with Elaine

—Mike

10 Comments

Screw the Scan, Lets Get on With It

Not exactly in those words, but thats what main chemo doc suggested. The scan at this point would tell us either cancer (surprise) or infection. The chemo doc knew that sending her back for the scan would be personally costly (extreme pain for Kathleen and potential drug overdoes again) compared to the benefits. If the scan showed new cancer mets, the treatment would be chemo. So, lets just get on with the chemo. So back to Avastin and FOLFIRI. The best outcome at this point is to freeze the cancer where it is. Shrink the tumors a bit and prevent further progression. We are all hoping that any metastatic spread in her spine (and elsewhere) will be held off and shrunk. But of course the cancer has progressed quite a bit, and we are in possibilities, not probabilities.

Last night was a little better pain wise– more in the managed sense. I will say ‘less worse’ ? They had to hold back on some of the pain meds after she came dangerously close to slipping in a coma. Today she is a little more alert. The Pain and Symptom doc will be by later this afternoon so we can re-group and plan / adjust some more.

As I write this, she is half way through her chemo. Still not like the ‘old days’ of chemo as she drifts away a lot.

Hmmm, just when it seemed all would go smooth, she had an allergic reaction. Been there. Done that. She is ok now. Short break before the 5FU starts…. 46hrs of slow drip poison/5FU killing the cancer cells.

—Mike

5 Comments

Bump

There is now a small (well, not so small) bump on Kathleen’s spine. ‘Pitted’ when pressed meaning there is fluid present. You sort of wonder why it didn’t show up on the MRI/CT. Although to be fair, the radiologist did note “fluid.” So tomorrow its yet another image, this time with a special gallium contrast. Then they are going to try and drain a bit of it to examine the fluid in detail. We got the sense there was probably a lot of back and forth between the neurologist and the main chemo doc as to the relative dangers (fluid escaping into or out of the spine) and benefits (understanding how to better treat it). So they will guide the needle via ultrasound to do it carefully as possible. Here is hoping….. Well, hoping for not just answers, but treatable answers.

Kath is tired, scared, anxious about the procedure, anxious to do it as soon as possible. As I mentioned previously, the pain is really starting to wear her down. She has a lot of strength to her, and thankfully, an amazing healthcare TEAM looking after her. All the nurses are really great, some double plus great. Its such a relief to leave at night not having to worry will she get the care she needs when I am not there. Having that trust / faith is so invaluable at a time like this.

Patient Needs Help

—Mike

4 Comments

Breath, In

Waiting outside the CT room and I can hear the machine whir into action. “Breath In” says the 1990’s era synth voice. I think after this one she gets a free nuclear powered toaster, having filled her loyalty card. Kathleen is massively doped up to try and deal with the intense pain of laying on her back. She is medicated as much as possible once again so she can stay still while they image another area. Its not as long as the MRI thankfully.
The latest theory (this time by a very earnest Neurologist) is an abscess in her sacrum. The MRI showed a relatively normal back “unfortunately / fortunately” depending on how you look at it. Some age related degeneration and some fluid but nothing that would account for the massive pain she has. If it is an abscess, it can be drained bringing almost instant pain relief. After so many tries– and they really are trying— Kathleen needs this win. The pain is grinding her down.
I think about some of the intractable work problems I have faced in the past. You come up with a theory, put in all sorts of effort to implement the plan only to have it fail. You think you have it. You get your hopes up…. no. You get beat down. You pull yourself up somehow, only to get beat back down. Repeat. Thats just money and equipment at work. This is very different of course. Its easy for me to say we will keep trying, as its Kathleen that has to endure.

More pills to try and get her through the symptoms. She took this photo this morning– her AM regime. I havent had a chance to ask her what was on her mind yet, but I will include it here.

Upstairs now and Kathleen is sleeping off the drugs. She had another rough night. On top of the pain, they are trying to get all the excess fluids out of her tissues which means more trips to the washroom. Her one leg has started to get better, but not the other raising some concern of a blood clot somewhere. But they are on it. They dont shy away from doing ultrasounds to make sure.

Lovely visit from her maternal aunt and uncle from Montreal this morning. They were in Toronto visiting their grandchildren and came up to see Kathleen and Elaine. They brought her a St. Patricks day drinking hat 🙂

—Mike

6 Comments

Team Effort

Really, when I think I have seen it all in terms of level of care and support, the staff at Grand River Hospital one up themselves. It seemed like half of the hospital was involved to help get Kathleen through her MRI. Nurses, techs, Radiologists, pharmacists, doctors. They got as much pain relief and sedition as safely possible, timed it all as perfectly as possible… Sent additional staff down into the MRI lab to inject more pain meds half way through– all so they could get an image and hopefully get to the bottom of what is causing the pain. If a tumor, irradiate it. If infection (discitus), treat it with specific antibiotics. If physical, they said they would even get an orthopedic surgeon to look at finding temporary pain relief. Wow. Thats all I can say. And of course, delivered with the utmost compassion, care and kindness. I would love to mention everyone’s names, but for privacy reasons I wont here.

And wow! is all I can say to all the emails, pics, videos and cards people have sent. They really do help get us through this difficult road. Each email, note, pic, video, when added to all the other emails, pics, videos and cards combine to a very warming foundation of support. Thank you from the bottom of our hearts for that. It really brings us a smile that we have such a wonderful community around us. I will include this one particular pic from her service club which I think is ok to post here.

After all that, a very generous and sweet stylist came and cut Kathleen’s hair, Jess/Jenn. Interesting story around her name.

On the medical front, Kathleen is technically considered to have pneumonia as there is fluid in her lungs right now. Having so much pain medication pushed into her, and then the attending saline to flush the meds, has caused her to accumulate a great deal of fluid throughout her body. Third spacing its called. (I think she is on ‘forth’ if there is such a thing.) She describes her legs as elephant trunks. She refused to allow me to take a picture, so here is an artist’s conception approximating how they look.

As you can see, they are quite large! I still love em. But I think she needs some moisturizer. More meds to deal with it slowly and gently. No results from the MRI yet. We will hopefully get something tomorrow. In the mean time, the pain is definitely down from its high point which is great. But its still to the point where she can only walk a few steps. It was a physically and emotionally exhausting day for her, but its one in the win column… on many fronts.

—Mike

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Hang in There

I am sitting low in a wheel chair parked in the hallway of imaging waiting for Kathleen.

Fifty feet at the other end, I can just make out the shitty little OR waiting room that Elaine and I sat in last April, when Kathleen was getting the tumor cut out of her. The OR waiting room is still temporary, and its design almost fosters a sense of anxiety. You are crammed in face to face with other family members closer than a packed Tokyo subway. It was night time then and the lights were dim in the hallway where I am now. It was the end of chapter one of this shitty bubble Kathleen and I got trapped in. As I sit comfortably and somewhat invisibly in Kath’s wheel chair, waiting for her ultrasound to complete, my mind wanders between eavesdropping on the hospital dynamics, and what I would tell myself at the end of the hallway last April knowing where things would go today. Would I do anything differently ?

I never imagined the almost daily imaging that has been happening– among other things. Multiple MRIs, full body CTs, xray after xray and now another ultrasound to make sure there is no blood clot in her legs. And the drugs… Lots and lots of drugs. Drugs to deal with the cancer. Drugs to deal with the cancer drugs. Drugs to deal with the side effects of the drugs of all the previous drugs. Here is just the evening assortment.

Her legs are swollen like elephant trunks right now with water. Its the body’s way of dealing with excess fluid (third spacing). We didnt understand at first why all the excess hydration. The Pain and Symptom nurse told us it was to try and bring the twitching under control, which was not a simple side effect of the hydromorphone, but a toxic reaction. Hence, the extra fluids to flush it out. They were confident the extreme water retention was not due to the cancer and organs shutting down as happens when one is near death, but just the drug side effects

Today we met with the main chemo doc. He still thinks its worthwhile to try at least 2 months of FOLFIRI. If he is keen, so is Kath, so am I. If by some crazy chance, it can freeze the cancer where it is, that would be great. We can make a go of it here. But the odds are not that good. Still, considering the hospital is paying for the drugs (about $40k), we take this as a good sign they have some hope it might work.

On the pain front, they are going to try another MRI tomorrow. They had to abort yesterday as the pain was too intense for Kathleen to hold still for 5min, let along 45 min. It was a bit better today on the pain front however. Perhaps discitis?

Last night I was talking to an old gal in the lounge of the cancer ward. She told me she had lost her husband of 45yrs to cancer. Took almost 3yrs. I told her where we were and asked if she had any advice for me. “Hang in there”. Not sure what the hell I expected. Magic words ? Secret ancient Mennonite advice? Hang in there.

In all this, Kathleen, Elaine, Jan and Lisa organized a birthday cake for me at the hospital from my favorite bakery, Nougat. ‘Hang in there’ ? There is no where else I would want to be.

—Mike

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Sunday

It was a bit of rough day for her. The pain is still not really under control, so she is back to a mix of two heavy pain meds. Even then, its not where she wants it to be. Tomorrow, some new strategies. A hospital physio therapist will see if some better positional options are available as well as trying to understand the cause of the pain. They are also going to get a different radiologist to look at her MRI report again to see if something was missed. In the mean time, she is where she needs to be.

As always, Kathleen really loves to hear from folks. She is not able to email back right now, but she loves to get email and hear from everyone. Send pics of your cat, or your dog, or someone elses dog or cat 🙂 It doesnt matter, it all helps. Her email address is kathleen@sentex.net. There is no magic bullet. But all the support we have gotten from our friends and family have really helped us both through this difficult journey.

—Mike

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Hospital Stay

Kath is in a semi private room and is resting as comfortable as possible. She has no fever now and the antibiotics seem to be working. Everyone was very attentive to her needs. As she has not been able to sleep on her back for over a month now, they brought her a selection of sleeper chairs to try out. It felt like we were in the Lazy Boy showroom floor. “how about this one? No? Let’s try this. Perhaps it’s better. What about this model?” They really want to help make her comfortable as possible.

Same with the pain meds. Usually the hydromorphone is the first line of heavy pain killer, but it wasn’t cutting it. But even worse, the side effects were quite extreme. Heavy sedation as well as other things like twitching and anxiety. So back to fentanyl, but in higher doses. Much better. It’s providing about the same or better pain relief, but it’s far, far less impactful on her consciousness which is nice for me.

People see pain and pain relief very differently and the staff here are wonderfully cognizant of it. Some people actually want the suffering for religious or philosophical reasons as they feel it brings them closer to their god(s). We are not those people. More importantly, its Kathleen’s choice how she deals with pain, not those around her. Obviously we both would like pain relief without the mental impairment, but the choice is not clear headed Kathleen in pain vs cloudy headed Kathleen not in pain. The choices are a) utter agony with Kathleen completely closed down to the world surrounded by the worst imaginable pain vs b) some impairment with pain control. Seriously, some people think a) is better.

Not sure when she will be getting out. The one doctor we spoke with today implied another bone scan is to come Tuesday or Wednesday. The MRI didn’t really show much other than disc degeneration in the lower back, but the amount of pain indicates something else. If it were a tumor they could zap it with radiation like they did in her shoulder/neck area. But they don’t know where it is or if it that. Either way, have to get to the bottom of it

—Mike

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On The Stage Please

Its been a busy few days of chasing normality. Kath’s back is still really bad, but she is doing her best to lead a normal life despite the new challenge. She managed to get through the MRI last night, so hopefully we will get to the bottom of it. She really had to dope up on the pain meds– 3 different types maxed out and even then, it was almost too much. Here she is looking a little giddy after popping many pills under the religious tech poster. Saint Technician of the Toroidal Ring order. Praise be to GE? 🙂

Today we went to a play! We used to go a lot to Stratford and the Shaw. As she has to sit in a very particular way to control her back pain, we brought the wheelchair along to the theater. We went to see Cafe Daughter in a very small and intimate setting. Its a play acted by just one performer, so the size was perfect. Drew’s partner Richard is the stage / production manager from the troupe and it was great to see his craft in action. A very powerful production. One actor telling a story from many voices. Very emotional, very well done. After the show, off to our favorite Saturday cafe (Nougat) along with the ‘cast’ so to speak. Lovely young lady who has a great deal of talent. I wouldn’t be surprised to see her in bigger venues in the future.
Yesterday, Kathleen’s work colleagues came by to visit and cheer her up. It sure worked. She was just glowing in all the attention after. Its hard for Kathleen to give up work. She loved what she did and loved the people she worked with. She was very touched that they all came by with such warm wishes and delicious dishes. We are both the type of people who derive much of our identities and self worth through what we do. Cancer steals that role from you and you then have a new part to play. But as they say, there is no such thing as small parts, only small actors. That makes Kathleen the biggest star in my books.

The star of the play, PJ Prudat, Worlds greatest Mother-in-Law, and the star of my show.

—Mike

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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

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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!!

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Non Registered Nursing Assistant

His skills are limited, but appreciated. However, suggestions he makes should be used for novelty purposes only.

Dogs are experts at living in “the now” which is a handy skill to have these days. It was a rough 36hrs for Kathleen. Last night we were trying to walk off the nausea and the vomiting just suddenly came on her half a block away from home. Not much fun. She actually gave quite the fright to a neighbour passing by. As she had eaten a few strawberries just prior … well, things were quite ‘red’ colored on the way back out. ick. The extreme nausea continued into today and she was really in pretty rough shape when she went in for her radiation treatment this morning with Elaine who looked after her all day while I was at work. Kath was looking bad enough that the nurse called the doctor and before long the doctor decided to put a hold on things for a week. More blood tests, and an x-ray to check for a blockage. Luckily, no blockage, but some dehydration and elevated pancreatic enzymes… again…. Pancreatitis again 😦 Why? Not sure, but she needs a break from the chemo and radiation and things will be re-evaluated next Thursday. Oncologist #1 wanted to re-admit her to the hospital, but not much point in terms of care management. Having gone through a few bouts of it now, Kath knows what to do and we have most of the tools at home to deal with it as long as it stays mild… And she promised she would go to emerg if the vomiting got out of control. But honestly, even then, its just doing the same things we do at home. BP is 108/68 (low for her), pulse a bit high at 92 (normally mid 80s). Temp 98.2F (good). Pain level 2, Nausea 3, Fatigue 8, blood sugars 7.8…. So stable now and off to bed. Tomorrow we get to learn how to use an IV hydration kit. Another tool in the tool box.

—Mike

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in the cancer bubble

… with Kathleen

Tag Archives: coping with cancer

Reason #983….

Hospice at Home

Family Days

Fighting

Clot

Hammered

Hammer Time

Break Time

Enjoying Spring

One Year After, and Tests

Running After Normality

Frequent flyer club (Collect them all Kids)

Day by Day, Angela Merkel’s Purse and ‘We are all in this Together’

Stumbling to Round Three

Foot Heads Arms Body

Screw the Scan, Lets Get on With It

Bump

Breath, In

Team Effort

Hang in There

Sunday

Hospital Stay

On The Stage Please

Burning Issues

Chicken on a Bun

Non Registered Nursing Assistant