Friday Hospital Update

Its been a very hard week. Started Saturday with terrible increased pain that called for more pain meds. On Wednesday night kath developed what we would later find out to be a nasty urinary tract infection. She was offered hospitalization a few times prior in the week and each time she said no. There was not much they could do in the hospital for pain management that we were not already doing at home. Why be in pain next to strangers in a small room. Better in her own space. It was not at all the case Wednesday night / Thursday morning. Maxing out every pain med we had as well as a strong sleeping sedative did nothing. I knew at 11pm when she could not pee she would have to go. She still did not want to. She was delirious from the fever and pain and was up for 48hrs straight. In her brief moments of lucidity at around 6am she realized it was time to go, and so we did. This time via ambulance. The community nurse insisted. It was the correct choice. There is no way I could have safely driven with her in the car in her feverish state– she was grabbing and reaching for everything in her dream state. Luckily all the dreams seemed pleasant to banal with only one or two moments where she was scared.

Seeing her taken away in the ambulance hit many emotional nerves. It was a new marker of where she is now for one…. And there is something jarring in the contrast of the calm and deliberate nature of the paramedics. They are there to do their job. They are kind and respectful but not emotional about what they do. My emotions on the other hand are high and it takes a lot of effort to not fall apart. I am a full bystander suddenly to this part of Kathleen’s journey. I stand aside as they put her on a chair and safety belt her in. It was raining and cool. They had waterproof blankets. They are of course prepared. Its routine for them. So I could feel slightly less separated, I held an umbrella over Kathleen as they took her to the truck. I could not go as I had to let Orville out who was crying as strangers took Kathleen away without her normal “Guard the house Orville, I’ll be back….” as she would throw a cookie to him. Will she come back ? Of course the thought is there. How can it not.

Emerge was fast. They are surprised that with all the meds, she still in so much pain. Even unconscious and unable to respond verbally, its clear she is in a world of hurt. As she was scheduled for a CT scan next week, they decided to do it right away instead to hopefully find the cause. Blood cultures show she has a nasty bladder/UT infection and her bladder is overly full. Cipro I.V. Since there was zero possibility she could lay still, they actually put her out and had an anesthesiologist with her. The images were good quality.
Two doctors, one from Pain and Symptom, and the other, the head of in patient oncology come to see her in emerge to treat her and get the ball rolling for admitting her. An hour or so later, the emerge doctor looks at the CT images and determines going up to in patient oncology is where she needs to be…. So up we go. She has insurance so she can get a double room instead of a quad. But if the inn is full so to speak, you go where there is space. A bonus! A single room! No room-mates!

By about 4pm, her body is finally starting to twitch and spasm less. But still not lucid. Her main chemo doctor comes by to discuss the CT. Normally a man of few words, his face says it all. Even he is shocked to see Kathleen in this state. Unfortunately, they showed at least one of the tumors in her abdominal cavity growing and “something new going on in her lungs”. Kath was suspicious this was happening in the last week or two. She was getting more nausea again and her psoriasis was coming back just like it was when the FOLFOX, the first line chemo drug, stopped working. From reading up on FOLFIRI and FOLFOX, this is a common trajectory for both. It works for a while and then it doesnt in ~75% of the cases for duodenal cancer patients. The Pain and Symptom doctors think that if she were to pull through this infection, then perhaps a month in her current state.

… and then the back pain. The awful back pain. Even with enough pain meds to fell an elephant, she was still writhing in delirious agony the whole night prior to admission. Probably the bladder infection didnt help either with the generalized swelling.
Heavily sedated now and the pain meds are not quite so maxed out and she is generally resting comfortably. She hasnt been conscious for more than a few seconds of recognition since Thursday afternoon. But thats the least worse choice for now. Awake in horrific agony. Or unconscious…. b) So, can anything be done for the pain ? A radiation specialist was in to talk to us. He is willing to do what we like. The problem is, what do we do. Without a target, its just a guess as to where to zap. She has some very tiny ‘abnormalities’ in her upper spine but its probably just regular old age disc wear. But generally nerve impingement there does not translate to where she feels the pain. To put Kathleen through the radiation, its at least 10-15min on the table with about 8 ‘transfers’ to get her there. This means a lot of pain. If they guess it right, and radiation doc thinks the odds are against it, it would be 10-14 days before she might have some benefit and a full 5-6 weeks before the pain from that one part of the spine would be gone…. But there would be potentially an initial pain flare before it got better and the doctors think she has perhaps 4 weeks? More pain for unrealized gain. No.
For a pain block procedure, we have the same limitations and then some. The big one being, Kathleen would have to be awake to let the doc know where the pain is and when it stops. Thats not possible.
Another thought the neurologist has is But thats treated with chemotherapy. There is no way Kath can tolerate that either and she is no longer responding to the systemic treatment.

We talked about what Kath would want done when things came to this stage. Its not like we worked out a large decision tree of every scenario in detail, but enough that I dont worry too much about making mortal decisions on her behalf. The staff here were great about encouraging us to talk about end of life decisions months ago and we did for the most part. We might have procrastinated a bit, but I think all is relatively clear. The doctors are pretty sure she will pull through the infection by Monday. The nurses I poll are mixed. Some dont think she will, some say too early to tell. In the mean time we wait.

Kathleen knows nothing yet of the latest scan. It will be hard to tell her… Will I be able to tell her ?

A friend sent me this link to a rather timely article

I like the poem in it.

10pm. Time to go home for the night. Someone is in the room with her constantly as she could do damage to herself. The people here are really, really, really amazing, so Elaine and I dont worry leaving at night. We can stay if need be, but we are not at that stage quite yet.


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.
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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


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


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.
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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.

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The purse
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Chemo day


Stumbling to Round Three

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.
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.

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.


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


Home Again!

It was a busy weekend. The pain is under enough control that the doctors felt comfortable to let us try and manage from home. Almost 20 days this time. Again, have to mention the amazing staff. Way more than just professional, but incredibly kind and caring. It makes such a difference when you leave at night knowing they really care as human beings and will do everything possible to make Kathleen comfortable as possible.

So, what was the cause of the back problems and infection ? They suspect probably mostly an impinged nerve. What was impinging it ? Good question. We had a meeting with the radiation doc and he said generally they need a target to blast. Only once had they done radiation of the spine without seeing an actual tumor– but there were many, many other factors to suggest cancer there. Kath is on some Lance Armstrong strength steroids, and that might have reduced the inflammation enough to help her back pain. She stops taking them tomorrow so we will see how things go.

In the mean time, I am sitting here in my living room next to Kathleen who is sleeping. Her IV meds finished for the night, some saline drip running slowly to keep the line from running dry. Its so good to have her home with me Photo 2013-03-11 11 06 30 PM


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.

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FOLFIRI, Full Fury…. furious snow storm as well. But we are just 1km away from the hospital so its an easy trip. You have to admire the dedication of the staff. One of Kathleen’s favorite nurses was looking after her today. She lives outside of the region but stayed overnight close by so it was an easier drive to work. Its that kind of care and dedication that make it so much easier to go through this shitty process. You know everyone tries their best for you. hospital-snow

Not totally complication free, but relatively easy. Half way through the new infusion, she started to feel dizzy and about to vomit. Not the typical reaction, but a reaction. Again, you just marvel at the cool and steady professionalism of her nurse. “Describe the nausea and lightheadedness…. Let me check your blood pressure and blood sugars…. They look good…. The atropine will fix you up”…. It did. She speaks to Kathleen with such kindness in her voice, like a younger sister would.

Social Worker dropped by as well. It was good for us to all chat. Its more like a salon than talking to someone who is paid to be there. We have talked to a few different people now. When offered help, we take it. We are not the type of people who if we are lost, wont ask for direction. But it doesnt always help. Not everyone can tune in on the same philosophical frequency. After the social worker left, the pharmacist asked us if she was another friend visiting, as thats what the tone of the chatter was like. She has some constructive suggestions and its good to talk over the issues, that Kathleen and I already talk about, to someone who has seen people on this road before.

We know the odds are very much against us right now, but there is still hope, even if its pretty small. The fact that we are not always in a puddle of tears I guess means we are doing OK. In the time we have left together, we’ll try to make the best of it. Its funny, when I run into people in person or on the phone, they ask, “how are you” and of course you respond with “OK” and in the back of my mind I say to myself, “all things considered”. But ultimately, its always like that. Whether you are in the midst of some severe illness or not, how you are is always in some context and inside that context, you fight to find “ok”. And I think we are.

—Mike & Kathleen

CT Report

Its in her lungs. The rest of the report didn’t really matter too much. Oddly enough it said the lymph nodes in her gut didn’t significantly change. Even her neck lymph nodes didn’t really look different in size. Perhaps only shape. If that was all in the report, that would be good news. But a spread to the lungs with several sites confirms what we already suspected, that the FOLFOX chemo drug was no longer working. There was no direct evidence of it hitting her liver, but later when we read the report, there were signs (eg Pneumobilia) that it might be headed there or already is there. So its spread. Friday, Kathleen will start the FOLFIRI, which is a second line chemo. Supposedly the side effects are not as bad as FOLFOX, but everyone reacts differently. As its a second line drug, it is normally not as effective as FOLFOX. But she wants to try and there is still a reasonable possibility it might work, so the doctor is all for it, as are we. But its just a possibility, not probability.

So, what does it all mean ? The chemo doctor said the lung nodes are small and it would probably be a “long” time before they get big, to where they are causing shortness of breath or fluid in her lungs– assuming of course the new chemo does not keep them in check. What does long mean ? He said “months”. I would prefer “years”, but its “months”…

What do we think ? Well, its pretty shitty of course. What more can one say. Before the chemo doctor appointment, we had a very nice long talk with a social worker who Kath connected with at the hospital in the surgical days. If we knew her outside of this context, we would consider her more of a friend as we have much in common to talk about. It was a helpful chat. Added perspectives on big issues like death and living while dying are important to continually work out and develop ways of understanding. Everything is on the table to talk about for us and I think that helps a lot. 25 years. A lot of living for us in that time. We still have some time left, and we will continue to build on it as best we can, for as long as we can.

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We Will Think About It Tomorrow

Kathleen is a very smart woman. Unfortunately, it seems her cancer is as well. As we suspected the FOLFOX was losing its effectiveness. The chemo killed off all the dumb cancer cells, leaving the smart ones. Little bastards. Well, not quite that way but hey, its a metaphor.
It wasn’t the worst case scenario today. Somewhere between least worst and worst. I was fearing he would give the dreaded date range. Instead, we are giving up on the FOLFOX but switching to FOLFIRI. A similar concoction to FOLFOX, but a second line defense. But… Always a but. Her platelets are dangerously low. So 2 week break. Its tough to wait around, but her body is doing its best.
She is also now slotted in for radiation next week on her neck area. Its not curative. Its merely to help with the pain. In 5 days, she will get 80% of the radiation she got over the summer, zapped into her neck area focused on the 2 nodes that have been growing again. Dr. Nuke thinks she will see pain relief within 3-4 weeks and shrinkage in 2 months. In the mean time, I guess more meds to deal with the ever increasing pain.
Sooo….. What does it all mean. I asked the Dr. Chemo what it meant. “Are the changes bad? Is it indeterminate ?” “Its Not good.” is all he said. Really, what else is there that can be said. How not good ? How bad ? Dont know today. We will think about it tomorrow. For now, we have another today.

Oh Yeah, Its ON alright 🙂