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 ūüôā But Orville is happy to be with Diane.
diane-orville

Betty spends a lot of time with Kathleen on the blanket her friend Maria made for her.
betty-chair2

—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 ? ūüėČ ¬†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 ūüôā
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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 ūüė¶

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 ūüôā
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—Mike