Friday Hospital Update

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

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

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

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

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

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

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

A friend sent me this link to a rather timely article

I like the poem in it.

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


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.

IMG_1067-001 IMG_1064


We Will Think About It Tomorrow

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

Oh Yeah, Its ON alright 🙂


Burning Issues

Its been a tough cycle mentally . Kathleen’s main metric for what the cancer is doing (for better or worse) is how the lymph nodes in her neck feel and look. Its not been good. While they initially shrunk, they seem to be getting bigger in the last 3 weeks. But they are definitely hurting more which takes us back to August when the lumps first popped up. Sometimes the sites where the cancer has spread initially respond to the poison… and then they stop responding. We dont know that for sure, but its not a good sign. As a result, we are going back to the radiation oncologist on Thursday to see if anything can be done to help with the pain. Its a bit tricky to zap around the neck as there is too much going on in that region which could be damaged if they are not careful. But thanks to RIM and a whole host of other generous local donors, the cancer center has some great modern equipment here. We also see the chemo oncologist tomorrow. Of course, we will ask for his interpretation / assessment as well. Not feeling very optimistic. But then again, I think I have become numb to optimism and pessimism to some degree. At some point, I think our bodies dial down the amount of emotion you can feel…. or you just reach a point where you become heavier on the stoicism and numbness. We have to, in order to make it through.

Thinking of this great pic of Kathleen from the summer. She was on a 7 day infusion of 5FU while getting the radiation treatments. Despite feeling crappy and barfy and having a chemo bottle connected to her 7×24, she wanted a day at the beach. It was an amazing day. One of my favorite beach days. Ever. More pics of that day with our friends Jan and Diane at They are nice to look at during this winter spell


Round 11 starts Friday if her blood work is OK.