Thank You

I really cannot express how much the support and love, and caring and kindness that so many of you have shown us means to me. I truly have felt part of a close and wide community of support. Thank you everyone who walked along with us during Kathleen’s life with cancer.

Thank you also for those of you who read of our journey, of our story. A friend of mine described our blog as a love story. Thank you, that is an honor I will gladly claim. Looking back on my life with Kathleen was amazing. We truly brought out the best of each other, and kept the worst at bay. We shared sadness and happiness in our lives. We were there for each other in our individual trials, and we were there together in our collective challenges. We laughed a lot. We all know our lives are finite, but its always hard when it becomes history.

Yesterday, was very much an important ritual for me. Before the service, I chose to walk to the funeral home by myself and got there well before everyone. It was a knee buckling experience coming into the empty room and seeing her Crazy Daisies urn next to the photo of her where she looks like the Queen of Belgium. It was an important milestone and marker in this part of my road as it was very symbolic as the proverbial final fork where our paths diverged. But who knows, perhaps we are like King and Weber St., which run parallel but meet 3 times🙂 There, I will end this, the final blog entry, with a Waterloo smile.

Thank you

—Mike

Celebration of Life

Hi Everyone,
We will be having a celebration of life party for Kathleen on Sunday, August 11th from 3pm to 5pm. It would be wonderful to come together to celebrate Kathleen’s life and legacy.

Instead of flowers, Kathleen asked that donations be made either to the KW-Humane society, or the Annette Fund at the Grand River Regional Cancer Centre.

As you know Kathleen loved and cared a great deal about her dogs and cat, as well as the welfare of animals in general.  Donations can be made at http://www.kwhumane.com/

The Annette Fund is in honour of former GRRCC employee Annette Specht – who was well known for her quiet advocacy and generosity to patients and families with emergent needs – a Fund was established in her name, to continue her good works!

When a GRRCC patient or family member has immediate needs for one-time assistance with specific items, such as: a meal (Tim Horton’s coupons/cards); a taxi, including wheelchair access (United Taxi voucher); or Hospital parking ($10 card, one time use), or a supportive medication from Health Care Pharmacy, not covered by another source.

The link that can be used is: http://www.grhf.org/en/indorgredirect

These ‘little’ costs can be very onerous for a lot of people. Kath was ‘lucky’ in that she had an amazing drug and benefits plan.  For many, this is not the case, and it can REALLY add up.

The service will be at the Erb & Good Funeral home.  You can find further information at http://www.erbgood.com/book-of-memories/1641288/McSpurren-Kathleen/service-details.php

Finally, I want to thank from the bottom of my heart all the emails, food care packages, phone calls, cards and just plain old support directed specifically to myself and Elaine.  Its been a fog for us after Kathleen died on Monday.  I have been putting pictures together to play at the service in the background, and its bitter sweet.  It brings back so many memories and makes me miss her so.  But also, I mourn the future I will never have with her. I really wanted so much more with her.  

 

—Mike

July 29th, 2013

Kathleen died today at 12:40pm in her home, with Jan, her mum, and myself by her bed. Orville and Betty were able to say their goodbyes too. The past few nights were very hard on her physically. She was getting weaker and weaker and the pain was more difficult to control. We were up since about 2am trying to bring her comfort. By 8am, she did start to relax a little more. We had also a bonus 15min of lucidity together at about 8:30. On the TV in the livingroom, I was playing pics from our lives together and she was able to see one with us on a Cuban beach and recognize it. Then she fell asleep until just past noon when she motioned a little, her breathing became irregular and her heart stopped and my heart was ripped in two.
Half of me was relieved she would suffer no more, and the other half was just suffering the loss of my closest friend, and the love of my life.
I am exhausted now, as is Elaine and Jan. We all need to sleep a few days to catch up. I havent really had time to digest and reflect on the day, other than to feel the fog of being elsewhere now. The proverbial cancer bubble has burst for me and I am not sure where I am. On 4hrs sleep in 48, its probably best not to think too much, so I will check in one more time on the blog in a few days.

Although I have many, many pictures of Kathleen, the two I have as wallpaper on my phone are
DSC_0066
and
DSCF0090

Of course, I have many, many more at http://goo.gl/8Px5Tf but I like these two a lot for a number of reasons.

—Mike

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.

Belching Dog

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

Not Awake, not Sleeping

Its been hard, but we are managing so far. I havent had much of an inspiration to write on the blog as things in many ways have not changed much. They are still headed to their inevitable conclusion and symptoms that now arise are just part of that. When that is, is hard to guess. Soon. Kathleen continues to get weaker and weaker. She hasnt eaten anything for some time. Even now, swallowing sips of water is difficult and speaking is very laboured for her.

To further complicate matters, Kath has been very frightened at night. They call it “sunsetting”… Things get worse at night. She will often wake up and not recognize the PSW and be afraid and confused. So with the help of our good friend Jan and her mum, we will be with her to keep her comfortable and feeling safe. I am on night shift tonight. Perhaps once or twice an hour, she will talk aloud about the dream state that she is in for a few sentences, look at me and then go back to a place where we are not. She is not really sleeping, but not really awake either. Somewhere between.

—Mike

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
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—Mike

Dessert

A better day for Kathleen. She is still sleeping a great deal, but a little less. She had some trouble with nausea and vomiting for the last couple of days but its better under control now with a new / old drug. She had a few bites of pasta and had a craving for a ice-cream Sunday. Elaine zipped out and got her one.
Lots of visitors today with the room packed a few times. Even when she fell asleep, she had a smile on her face. Thanks to all who came by. It really was a satisfying meal for her spirit!

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Photo 2013-07-04 7 45 02 PM

—Mike

Sleeping

Kath is sleeping a great deal now. She is perhaps awake for 10-20min a day just a few min at a time. As the disease progresses, more things start to shut down. She can hear us some of the time, but responses are often just a squeeze of a hand or a slight nod of a head. Occasionally she even musters a joke. When I was trying to understand if she wanted to be in the chair or the bed, I would repeat, “tell me sweetie, ‘chair or bed?'”… Pushing out a grin, she replied, “Chair or bed”. But most of the time its a deep sleep. For me, I know the inevitable is coming. It of course will. Soon. But I have become so adept at living moment to moment to cope, that the event still is out of sight. Probably until the last moment before I see it.

Betty is her little sentinel.
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—Mike

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
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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.
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Kathleen’s sister Mel from Montreal with Elaine. Lots of smiles and happiness.
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Kathleen’s brother Don and her sister-in-law Bonnie
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Sleeping under Jordan’s magic princess
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—Mike

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.

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—Mike

Wake up, I have some crappy news for you

Kathleen is awake. Last night, after being unconscious for some 64 hours straight, she woke up. Just like that. At the time, we had no idea if she would stay awake, so I just dropped all the shitty news on her at once. As I sit here writing this, I ask her, “How would you characterize your reaction ?”… “Well, I guess somewhat stoically as I was not really surprised.” I would agree with that.

“What was it like waking up after 64hrs?”, I ask… “I had dreams several times about being woken up. I had many hands on my shoulders shaking me and saying my name many times…. Sometimes they were English and sometimes German. Ka-ta-leen…. Ka-ta-leen… Ka-ta-leen”… It sounds like these were ‘land of chocolate Germans’ as opposed to brown shirted Germans🙂

My big worry was if she felt any pain and just could not verbalize it ? No she said. Not at all. Good.

Everyone, including the doctors are surprised at how well she looks today. A good batch of anitbiotics and 2 units of blood I guess help🙂 The main chemo doctor had nothing new in terms of prognosis. He offered a little more clarity about the “new things going on in her lungs” in that he will review in more detail with the radiologist tomorrow to better understand the full implications and talk to us again.

Also the neurologist came by to let us know he is still working on things in the background. So as usually, lots of wheels turning on behalf of Kathleen. Really could not imagine anything more being done.

Its been a good day so far, so we will take that.

Kitchener-20130616-00798

—Mike

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
http://www.theatlantic.com/health/archive/2013/06/a-better-way-to-die/276724/

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.

—Mike

Back to the hospital

It’s been a pretty rough week for Kathleen to understate things. It started with a pain crisis on Saturday. Up the continuous rate of one pain med says the doctor…. Too much, so back it off. But the toxic reactions to the drugs didn’t go away. It all came to a head last night where there was enough pain meds in her to take out an elephant and still she was up the whole night legs racing like she was in the 100m dash
Plus she could no longer pee and a fever…. Nurse wanted her to go yesterday…. We held out until this am. We both knew. So back to the hospital again

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
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Birthday With Merv, Chelsea and Lisa, Jan and Elaine
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Fun emails (cute animal pics from Bonnie)
fun emails


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

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.

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In front of the Apple Tree


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Enjoying the hot weather on the long weekend


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Wonderful brunch with Jan, Elaine, Bonnie and Don

Photo 2013-05-23 12 23 54 PMShoes of love🙂

qbay-001Visting in Q-Bay on Chemo Day

—Mike

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.

Flan

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
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—Mike

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!
Image

—Mike

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.

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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

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.

looking
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

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.

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

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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—Mike

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.
cake A reference to the old Timex commercial….

She always looks great to me.

Young and not so young around us.
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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
p

A mobile tree.

—Mike

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

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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
fabric-001
Warming up cold hands at the start of today’s race
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—Mike

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😦

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Later

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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

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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.
Photo 2013-04-06 11 19 10 AM
syrup1

—Mike

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

—Mike

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.
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It is uncomfortable as it looks🙂 But Orville is happy to be with Diane.
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Betty spends a lot of time with Kathleen on the blanket her friend Maria made for her.
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—Mike

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
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—Mike

Intersection of Irritation

What, you thought it would be smoothing sailing for all ?😉  Rough night for Kathleen.  Her TPN was changed to have less calories since she is eating a little more.  Smaller volume infused over 8hrs.  If we do it at night, that means no more than 8hrs sleep.  With some early AM nausea and vomiting, we were up for about an hour… I forget when. 3 ish ?  Had to hook up some gravol, but it was not soon enough so emergency barf bowl got used.  We are both pros at this.  Even before the Cancer, my job often gets me up in the middle of the night, so that part I am used to.  But we are all humans of course. So you get irritated.  Me, lack of sleep will add up and make me irritable. Betty, our cat was irritated as well since I had to get up and disturb her happy sleep.  The dog was annoyed because I had to turn the light on.  Kathleen was irritated by the pain, the pain meds, the nausea, the vomiting, the somewhat uncomfortable sleep in the chair, and oh, I guess the cancer in there as well.  The nurse too had a nice start to the day with her car window breaking.  I only spoke to Elaine briefly on the way out, but she had forgotten her purse at our house last night with her cell phone in it, so that too no doubt irritated her.  So, a grand intersection of irritation. 

You forget that inside the cancer bubble are all the ‘normal’ problems of life. Before having been taken away in the bubble, I would have thought that ‘little things’ would no longer be bothersome, but in some strange way, they are no different. Its true, some ‘problems’ are no longer on our radar, but oddly enough there is a class of annoying things that are the same– annoying. I will have to think about it more on the dog walk tomorrow. Orville always has an answer🙂
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—Mike

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

—Mike

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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—Mike

Hard Effort, Hard Day, Hard Results

She really did try with all her might, but the pain was just too much to lay on her back. She was incredibly brave. Not fearless. Brave. Bravery is not the absence of fear. Bravery is pushing forward despite every fibre in your body telling you don’t. Pushing through the tears, to the point where she started to throw up. They didn’t manage the pain meds quite as well as they did for the MRI, but I think her pain issues are worse than they were. At this point, even if she didn’t have cancer, sitting and sleeping in a chair for 2 weeks is going to cause problems on their own. The gallium is in her system until tomorrow so they are going to give it another try in the AM and hopefully better time the pain meds. Kathleen really wants to push forward with another round of chemo but they are waiting on the gallium scan😦

The afternoon was particularly hard. They up’d her one drug to the point where she became unresponsive and was drifting dangerously close to being in a coma. They were readying the shot of adrenaline when we were finally able to get her to open her eyes. It was a tad stressful to understate things.

Second attempt tomorrow morning. She is already getting anxious.

—Mike

The Universe is Expanding

Woody Allen has his moments for me. His unabashed sentimental love of things like the city he grew up in, and warm sepia tone childhood memories really agrees with me. Lately I had been thinking about this clip of a young Woody Allen character expressing the ultimate existential angst about life and death. You can watch the video clip here. For those without video access, here is the snippet.

    DOCTOR 
   (Nodding) 
Why are you depressed, Alvy?
 
    MOTHER 
(Nudging Alvy) 
Tell Dr. Flicker. 
(Young Alvy sits, his head down.  His mother answers for him) 
It's something he read.

    DOCTOR 
(Puffing on his cigarette and nodding) 
Something he read, huh?  

    ALVY 
(His head still down) 
The universe is expanding.

    DOCTOR 
The universe is expanding?

    ALVY 
(Looking up at the doctor) 
Well, the universe is everything, and if 
it's expanding, someday it will break apart 
and that would be the end of everything!

Disgusted, his mother looks at him.

    MOTHER 
(shouting) 
What is that your business? 
(she turns back to the doctor) 
He stopped doing his homework.

    ALVY 
What's the point?

    MOTHER 
(Excited, gesturing with her hands) 
What has the universe got to do with it?  
You're here in Brooklyn!  Brooklyn is not 
expanding!

    DOCTOR 
(Heartily, looking down at Alvy) 
It won't be expanding for billions of years 
yet, Alvy.  And we've gotta try to enjoy 
ourselves while we're here.  Uh?
He laughs.

I love that bit in the script. He laughs. I feel like all three of those characters sometimes. My aunt Eva was like the doctor, my aunt Katie was like young Alvy– philosophical, but afflicted with a lot of meloncholy and my uncle Gabor, like the doctor– philosophical and always ready with a good insightful joke.

Nothing but the quiet hum of the hospital tonight. Kathleen’s new room mate is drifting in and out of sleep with the headphones on watching TV. Kathleen has been sleeping since I got here after a long day of visitors. She still had a rough night and morning. So more med adjustment. Gallium scan tomorrow as well as yet another CT. This time of her head. She has some double vision going on which is unusual. Possible spread to the brain ? Its unusual. The heavy sedating drugs might just be making her muscles relax too much and she cant focus. When the main chemo doctor was here this morning, he said spinal involvement was rare, but… Well, you never know. So they aggressively check for these things here. Honestly, what more can you ask for. The gallium scan tomorrow will look for active and recently active infection sites as well as look for some types of cancer sites. He is somewhat doubtful about the efficacy of this test. I think the Neurologist wanted it more.

Actually, our chemo doctor says, “I dont know” a lot which actually gives me more confidence in him. Its hard to tell people who desperately want answers that they dont have them and really, with this type of rare cancer there just isnt enough data to predict how it will go. Ultimately, it wont go well, but we dont know just quite how long. So Kathleen and I will alternate through those roles above. Sometimes being the depressed kid, sometimes the “here and now mother” and sometimes the laughing doctor. Hopefully more of the laughing doctor, all in the rapidly expanding universe.

—-Mike

More Scans

It’s hard not to get discouraged when you don’t get answers. They really are trying. She had a nerve capacitance test today to approximate any nerve damage in her spine. Seemed to be ok. Next test is a gallium neoplasm contrast. It takes a few days to infuse the isotope and then she will have the scan on Thursday
It’s used to find both infection sites as well as cancerous sites that are too small to show up in other imaging techniques. Main chemo doc this morning was still not certain as to what was going on. He suspected the lump on Kathleen’s back was not an abscess and the radiologist agreed. So in the end there was no fluid taken out as the ultrasound showed it not to be liquid. So what is it? Most likely the cancer further spreading. The one ‘good’ thing about that is radiation can at least kill the spot and bring pain relief if that is the main cause of the pain. But, the benefits of the radiation takes time. So to bridge that gap more pain meds. Some heavy duty ones. But she is able to sleep a little now.
Chemo is on hold for a couple of more days until the scan is done. It’s more important to confirm its not an infection and is instead cancer so as the determine the best course of treatment.

Regarding all the amazing pics people have sent over the last few days, we really appreciate it! Kathleen feels bad she has not been able to respond, but they really do bring a smile. So keep them coming! From the both of us, thank you so much! It’s a very big comfort to kathleen and i that so many people think about us

—Mike

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.

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—Mike

House

Its back to the panel of metaphorical flashing red lights again. On top of all the horrible back pain, now pancreatitis once more. Nausea, diarrhea, additional pain. The CT scan unfortunately did not show an issue. So Spinal Tap tomorrow to look at the fluid in her spine and see if there are cancer cells there. It would be nice if this were an episode of House. Three incorrect theories, then the “aha moment.” But its not like that of course. Sometimes there are no ‘aha moments’ but we hope the immense training and experience of the various health care providers involved will come through and at least help her win this battle. Its hard enough to face the mortal issues Kathleen has when they are hazed in pain and fogged over with heavy pain relief.

—Mike

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.
Photo 2013-03-02 1 33 03 PM 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.
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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🙂
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—Mike

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. zonta

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

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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

Hang in There

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

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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.

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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.

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—Mike

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.

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—Mike

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
Photo Booth

—Mike

Back to the hospital

Unfortunately no chemo today as they want to keep her at the hospital

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Kath is a bit stoned right now from the pain meds and fever. I am a bit relieved as I knew she was in rough shape and was in no condition to get the poison, aka chemo. For now we are just hanging out in the chemo suite and will go up to the 6th floor where they will keep her over the weekend and hopefully no longer. If we are in luck the IV antibiotics will fix the infection quickly

Family Day

It was great to spend time with family members both near and extended. Exhausting for Kathleen, but very well worth it. Drew and Richard were in town as well as our friends Jan, Jill and Anne. We drove Drew and Richard to the airport today who were en route to Vancouver and then dropped into see my father for his 84th birthday.

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—Mike

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?🙂

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

—Mike

FOLFIRI, OK

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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—Mike

Back Again

When I was about to head home yesterday, Kathleen texted me saying, “going to emerge, meet us there”. Its odd how the phrase, ‘going to emerge’ no longer elicits the same reaction it once did. Its the same with Kathleen deciding a txt message (used for messages like “C U @ 7pm ?”) was an appropriate medium for “going to emerge”🙂 Reason # 823 why I love Kathleen. We can make light of a nurse saying she may have a fractured spine. Seriously. After closer investigation today, its doubtful, but along with herniated disc or a new tumor, a fracture was a possibility. The community nurse wanted her to get an emergency MRI. But talking with the Cancer center, we all decided it was not so urgent and that we should meet the pain team after the radiation in the AM to see whats up. Either way, she is in a great deal of back pain when she does pretty well anything other than sit in her chair. Can’t lay down, can’t stand, and its difficult to walk. This morning while getting her last radiation blast to the neck, she really had to fight throwing up from the pain.

We saw the Pain and Symptom team right after the radiation. They are really great and thorough people. As both Kath and I have managed chronic back issues over the years, we knew the drill and the types of diagnostic questions. We were all in agreement, its probably a disc issue, but the cancer spreading is also a possibility based on how dialed up the pain has become. It was a question of, is the MRI needed right this moment today, or in the near future. Near future. I really like this Doctor. Probably the most out of all the superb people we deal with. I have great confidence in their abilities, but I really appreciated him taking the extra time he takes to go through his diagnostic process. He took a good 5min to review all the internal debates he had in his mind while questioning and diagnosing Kathleen so that we knew he arrived at his decision with due consideration.

As for the CT report ? Its done. We haven’t seen it. Pain and Symptom doctor asked if it was ok that we talk it over with the main chemo doc who ordered the scan, as we would get the proper context. Kath said yes, that was OK. I would have rather seen it, but then again, I was the kid who at 4yrs old asked my mother what a mortgage was. I want to know, but I guess in my gut, we both kind of know. Expect the worst, hope for…. an extension? Yes, that’s what it feels like. Back in our university days, Kath and I could be awful procrastinators. I feel like I am hoping the doctor tomorrow will give us an extension. We eventually have to hand in the essay so to speak, but, um, Orville ate our class notes. Can we have another year ?🙂

If this post sounds a bit grim, I am not doing the day justice. We laughed and smiled and invented a new religion in the Doctor’s office that Kathleen will lead (St. Kathleen, of the coordinated traffic lights). You see, she has a thing about unsynchronized traffic lights🙂

As today was the last round of radiation, Jan bought some celebratory cupcakes! She is an amazing person our Jan. Love, support and friendship in good times and bad. We are lucky to have her here.
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—Mike

Photocopying Kathleen

Which way
Pretty well head to toe imaging today. Because she is having severe nosebleeds and persistent infections in her nose, they are imaging her head and sinuses as well as the full body CT originally scheduled. Kath is having new gut pain on top of the regular issues so the timing is appropriate.
Our family doctor has really been going the extra 10 miles to make sure everything that can be done is being done like a master project manager. But, to just know she is watching out for Kathleen and that she is in her corner is immensely comforting. Really great professional and human being.
The imaging of course does not hurt. Its more a mental battle. As the machine wurrs and buzzes, turns and churns, you lay there wondering what does it see. What has it found. Your fate is now about to be read by someone in an office down the hall. With a probable cup of Tim’s in their hand ( it seems to be required here for staff), analysis will be done. Those dispassionate radiologist words and phrases will litter the report… Which ones will they be ? “Unremarkable”, “legions”, “gross”, “unknown mass”, “positive nodes”, “disease progression.”
We are to meet with the main chemo doc Wednesday to discuss the results but our GP said she would call as soon as she got a copy. She asked Kathleen if she still wanted to hear if it was bad news. Yes.
I feel resigned. Kath, a mixture of emotions. Sad, scared but somewhat numb as well. We are both anticipating another shift. We had sort of acclimatized to this level and we sense another shift is coming. Really, the level of dread is not what it used to be. Perhaps we are getting acclimatized to the acceleration as well as the dislocation.

A note about emails. Kathleen really, really, really appreciates all the notes/emails of support. She wants to respond to each and every one of them, but is sleeping a lot these days. Please know that she loves to get them, but is having problems replying. Sometimes she finds it a bit emotional to write back, so I do the blabbing for the both of us🙂 We really do appreciate it, and as I have said before, it very much sustains us through this rough road.


—Mike

Radiation, Season 2, Episode 1

First day of Radiation for Kathleen as well as a visit with the Pain and Symptom team. Kath is having a lot of difficulty with her back pain. Doubt its the cancer, most likely from the bad sitting as well as not being able to do her exercises that have in the past kept it very well managed. So yet another med to try and deal with a different type of pain. Tylenol works very well, but she cant take that when her immune system is suppressed as it can hide a fever which indicates infection.  Of course being on the radiation table doesnt help her back either.  But she is a trooper!

The photo below was in the Sanctuary where we slipped in to do Gravol.   Episode 2 today.
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—Mike

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.

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Oh Yeah, Its ON alright🙂

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