Team Effort

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

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

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

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

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

—Mike

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Hang in There

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

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

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

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

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

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

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

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

—Mike

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Sunday

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

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

—Mike

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Hospital Stay

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

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

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

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

—Mike

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Back to the hospital

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

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

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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.

—Mike

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On The Stage Please

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

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

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

—Mike

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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.

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

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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.

—Mike

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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.

—Mike

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Photocopying Kathleen

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

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in the cancer bubble

… with Kathleen

Monthly Archives: February 2013

Team Effort

Hang in There

Sunday

Hospital Stay

Back to the hospital

Family Day

On The Stage Please

FOLFIRI, OK

CT Report

Back Again

Photocopying Kathleen