Hammer Time

As in after “Break Time”, not the parachute pants wearing MC. (Yes, age specific allusion). Time to hammer her system with chemo once again. She is anxious to get back as she feels she has made gains against the cancer sites with the last CT report. Although Kathleen does not regret taking a week off, she doesn’t want to delay any more. Its a difficult decision to make. You have to balance off between killing your whole body with toxic chemicals and giving it all a break. But you cant be selective about what gets the break and what gets the toxic soup. The cancer cells also get a chance to regroup with time off.

Its been a bit of tough week for Kathleen on the pain front. It has not been under control really. We had a meeting with “Team Pain” yesterday. They really are quite earnest in their efforts to help Kathleen try and control her pain and symptoms. The doctor we meet with takes great care to explain to us the reasoning behind his plan of action. I appreciate how he takes the time to make his case to us where some doctors might say, “take these pills, see you next time”, he takes the time to elaborate his thought process in great detail as compared to some doctors we have dealt with. But, the limits of science and medicine are the limits and they can only do so much. Plus, its treating the symptoms, not the elusive cause. She has been on a new pain med, lyrica. Hard to tell if its working. Its not solving the issue of course, but you cant tell if it would be worse without it. Unless we had a control Kathleen (a double entendre there– ‘control’ and ‘kathleen’), we cant tell how effective it is. Its quite possible she would not be able to function without it, or it makes no difference at all. Hard to say.


You can see from the pic she is pretty tired, but the amazing dinner and desert Jan and Elaine made really cheered her up. Sleep has been hard to come by for her at night. A series of unfortunate events as well has kept her up. Two nights ago, a neighbor’s car alarm kept going off through the night. I went out to check, the poor guy was in his housecoat trying to pull various wires without luck. Add some early morning emergency gravols for nasty cramps and near vomiting and it has made for a long week for both of us.

So here we are again, in “Q” bay.
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You can see the effects of the lyrica and the new type of subcue ports on her arm with the bruising. More side effects to the side effects to consider.

And now back in the chemo cave with her guardian cat


Screw the Scan, Lets Get on With It

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

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

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

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

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

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

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

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

—Mike & Kathleen

CT Report

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

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

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

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