Day 137 - journals and possible chemo brains

Today I spent as usual: weaving, napping, reading. Diane came over with a huge bowl of delicious spaghetti sauce and meatballs and a package of noodles. It turns out that both Ellie and I feel John is a good spaghetti sauce chef. I sat down and ate two delcious bowls right away. Ellie may have had three. That good cook gene has clearly been transmitted to the next generation.

Ellie's blanket is coming along nicely. I am not sure how much yardage is finished yet, but I've been working on it long enough to have a warp thread break so that's a while. It looks really good; I am very proud of it.

The dogs were very silly today. Kita went with Barbara and Maggie and the rest of the crew today and both dogs came back even more exhausted than usual. Kita, smaller by half, but dominant by full, got to sleep in Maggie's warm, soft doggie bed. Maggie slept in the kitchen where she could keep a half awake eye on the meatballs. Kate came by to say hi and it turns out that one of her dogs has bilateral trigeminal neuritis. Who knew? Sort of like dog Bell palsy. I am waiting for some one with cattle to tell me their cow has it too.

I am matching the dogs well and am pretty tired myself. I have runs of energy and then lie around doing nothing. I did walk downtown twice in search of the perfect get well present for Shelley which I ultimately found. It's nice to put my newly and dearly earned knowledge of being a patient to use.

This week's NEJM has two articles that are well worth most people's time. There is an excellent review of irritable bowel syndrome. It is really the best thing I have seen written on IBS anywhere, ever (granted, I am not up to date on the IBS literature). If you are even marginally interested in the syndrome, read the article.

The other article has been in the news a lot and is really interesting: "Patients' Expectations about Effect of Chemotherapy for Advanced Cancer." What the researchers did is ask a whole bunch of people with metastatic lung or colon cancer if they thought they chemo they had decided to take was very likely, somewhat likely, a little likely, not at all likely or unlikely to "cure" their cancer. Using the usual definition of "cure," in this case, the correct answer is "unlikely," and around 30% of patients with advanced lung cancer and 20% of patients with advanced colon cancer got it right. 25% of patients with advanced lung cancer and 35% of patients with advanced colon cancer thought palliative chemo was very likely to cure them with another 25 and 35% thinking "somewhat likely." There is a very nice editorial which lays everything out very nicely, but I think the whole question really boils down to "if you ask a dying person what they believe will be the outcome of a treatment they have already decided to take, what do you think they will say?"

I imagine that people would have reframed their expectations at that point and hope for a "cure," like "more time" or "the spots will get smaller for a while" and, of course, they believe that the chemo can deliver that "cure" to them (the rest of the statistics support that patients understand they can expect symptom relief and life extension from palliative chemo). OTOH, the editorialist points out that 25% of Medicare's spending is in the last year of life. If patients are accepting palliative chemo hoping for a chance at eradication without return, who would not accept it for life prolongation/symptom relief, this is a problem.

The authors reference a study showing that patients with advanced cancer would accept toxic treatment for even a 1% chance of cure but would be unwilling to accept the same treatment for a substantial increase in life expectancy without cure. When I read that, I tried to imagine how I would feel if I were in that study. It would depend on what "substantial increase in life expectancy" meant and if there were some other potentially better option I was giving up, but if "substantial increase" was substantial, I'm in. (Luckily, I have available and am getting treatment with a much better chance of a cure that is not toxic.) Of course, I'm in the biz and I understand statistics so my view is not typical. But--if patients are really valuing "cure" as medically defined so highly, what are they thinking when they agree to palliative chemotherapy? (which is mostly not toxic so it's not apples to apples, but I think you get my drift).

If you are finding my train of thought a little hard to follow tonight, don't despair. Terry feels like I'm not quite thinking perfectly. It is actually really hard to hear that someone thinks you are not thinking well; how can you defend yourself? I felt that I had been thinking pretty normally; what other perceptions about myself/my thinking/the entire universe were suspect now? There were tears (a lot of tears), but after Terry told me he felt my reasoning and thoughts were ok, that I just didn't seem to have the usual level of vigilance/alertness and his faith in my ability to carry out automatic tasks was marred, I felt better. He always knows how to flatter a girl.

Tomorrow I am going to get labs. I am hoping this time that there will be something to fix in my labs that makes me feel more energetic and helps out my brain. For you, I hope a solution you have been seeking will start to appear. If you are not seeking a solution to some interesting problem, I hope you get to get busy soon because I think solution seeking is one of the funnest things we humans get to do.

Day 136 - this n that

This morning when Barbara came to pick up Maggie she had a brie baker for me. I have never made baked brie and I don't really think I'd ever had baked brie before today, but now I have and it's pretty tasty. I exulted so much in eating brie in yesterday's post that Barbara felt I needed a brie baker. It probably turns out that today is my last for sure day of non-neutropenia so I will transition myself to the neutropenic diet in the morning and I really had to eat the rest of the brie today. What I did was cook it as the baker suggested and then took it to Tommie's. We called up Barbara and she joined us eating brie and watching the sun set on the river. It was nicely relaxing.

Other activities for today include weaving some of Ellie's blanket. I am getting the challenges worked out and it is growing pretty quickly. It is so fuzzy and warm looking that I think it will be tough to hand over to her.

I also spent some time on the CAPC forum websites, imagining my professional life out there waiting quietly for me. I'm getting excited for being done with all of my various poisons and on to regular life again--mid December or so. I still do not know the specific next poison that Dr Hill has planned for me, but will keep you updated when I do.

Other activities for today were a little walk through downtown which was totally gorgeous today--the sun was out, a gentle, fresh breeze was blowing,  there were constant clumps of people out walking and enjoying the day (perhaps because there was no school?). I took this nice picture of the dam and this out of focus picture of a crazy bird that was hanging out in the river. There were two and I was not able to get either in focus. This is an example of the kind of thing the iphone camera is not that great at. I could carry around my point and shoot in addition to my iphone for just such situations.

All the overflow is coming out the sides; the dam wall is dry. There is strong consideration being given to getting rid of the dam as it serves no purpose any more.

Our photogenic river, taken from the String Bridge, looking upstream.

The weird bird. It's quite thick looking with a white chest and brown other parts and a waterfowl kind of beak.

More photogenic Exeter. It's hard to believe that this was the day we were all so worried about with Sandy. We were so lucky in the seacoast of New Hampshire. That's the public library behind the island. The children's room has a window that is right out over the river and worth a visit, especially in the spring melt.

This consolidation has been so much better than either of the others. I feel really quite good: easily fatigued, but energetic between rests. My mood and thinking seem to be fairly normal. My mucous membranes are intact. Hopefully, things will stay good this time. Tomorrow, Diane is coming for a visit and I have no other plans planned. Thursday will be my next set of labs.

I hope for myself for tomorrow a day of recovery. I hope for all the folks who are submerged or still damp, a quick recovery. For you, I hope a peaceful day with recovery if needed.

Day 135 - yummy!

I feel badly because I really enjoyed today and I know it was a miserable day for a lot of other people. My day started with Tommie and a trip to Manch for labs. I ran into a couple of people I knew which was nice and had my labs drawn without complication (or pain/discomfort). My labs were great: ANC 1,130, hgb 8.7, platelets 152. This means I do not need a transfusion and I can still eat a regular diet.

Once they called me to let me know, we decided to celebrate by having lunch at the Green Bean. Since I will not be able to have brie soon (too much fungus), I had a grilled brie sandwich with tomato and took home a salad for dinner. Ellie always gets the same: french roll, provolone, ham, potato chips so she is never disappointed. Tommie and Terry looked pretty happy too.

Terry and I continued to look at the surf (bad, citizen, bad, bad! "Avoid parks, beaches and low lying areas") which was incredible. I didn't really get any good pictures of it, but here's what I got.

Lots of churning surf and gawkers like us

Jenness beach which is usually very wide and the water which is usually pretty flat

There were times when you could look out to sea and see that the surf was higher than the top of the car. Going out to look at the surf was probably not our smartest move, but beautiful and fortunately we lived to tell the tale. It made me think of what it's like on a summer day when the waves get going a little and the ocean sucks the sand out from under your toes while at the same time the waves push forward. Except it was doing it at a huge scale. The whole of the ocean in the zone closest to the beach where you sometimes see surfers was filled with white foam. When you looked out further, it looked like a crazed cake froster had thrown vanilla frosting at a canvas in a not particularly artistic pattern. There were huge drops in height of the water at times and spray going over onto the road.

Next, since again I can eat brie for a couple of days, we stopped at Nancy's for cheese. Nancy's theory about why I've done so well with my chemo is because I am not afraid to eat anything. I have to think that there is some wisdom in that. Surely brie, Matt's locally grown produce and all the salmon have been good for my marrow. If nothing else, they've been good for my psyche. I *would* like to take this opportunity to point out that this doesn't mean I don't do the (hated, much maligned) neutropenic diet, because I think I do adhere pretty well to it.

On our way home, we stopped at Matt's and he had one basket of my favorite variety of raspberries. I am not quite sure of their name; it's similar to Polonia. They are huge, not as sweet as most raspberries and have a mild floral taste. They are late in the season so if there is an early frost, you don't get them. I think Matt does not really favor them because of this, but with global warming, we have had them the past three years. I have not really had raspberries this year because it just hasn't worked out: when I've had cells, Matt hasn't had berries or vice versa and, well, I only like the raspberries varieties that I like, but today was my payoff. I took a picture of them with a little gold pin so you can see their size and texture. 

Queen of fall produce

Then we came home and I had a three hour (!) nap from which I woke refreshed and ready to take on the world. Sadly, all that I needed to do was a little email and then it was dinner time. Again, taking advantage of my white cells, I had the gorgonzola salad from the Green Bean (mold, lettuce that may or may not be washed appropriately, have the walnuts been thouroughly toasted? otherwise, fully neutropenic compliant--i.e., totally and completely wrong). Then Terry and I lay on the couch and watched the big trees between our house and Doug's get tossed around. Our house is 140 years old or so and it is nice to think of all the people it has sheltered over the years just like it was sheltering us tonight.

I think I'll do a little weaving tonight. I remember one time reading where a woman said it took her nine months and nine days to make a huge dining room table cloth. Nine months to be intimidated by the size of the warp she had to deal with and procrastinate, then nine days to do the actual weaving. I think I am responding similarly to Ellie's blanket.

Tomorrow, I will not, not, not be getting any blood components which makes me happy. I hope I will be cozy in my little house and that you will be too. If you are in an area where you are not affected by the storm or you do not wish for a cozy day, I wish you something that fills you with as much happiness as late season, huge raspberries did me today. Otherwise, may we all be safe and cozy.

Day 134 - not a speck of news

Today being official run up to the storm day and all, there was not much to be done except nap, weave and make delicious salmon again.

I was really a champion sleeper today logging twelve hours in bed at once and then another in a nap late morning. I feel pretty refreshed actually and maybe even a little energetic, oddly enough. I went outside with the dog and then decided that the backyard really had to be cleaned up, the hose wound etc before the big storm got here. For some reason, it seemed very important to me that the storm not find our long hose all in a mess, but rather neatly wound up. I'm thinking this might be progress in terms of my energy level although maybe not in terms of my common sense.

I also went out by myself and ran some errands. I noted that despite having had chemo recently, my brain seemed to be working better than most of the ones I saw evidenced in the grocery store parking lot, to say nothing of the gas station. I was glad I parked as far out in the grocery store as I could, people seemed to have forgotten how to use their rear view mirrors at the Stop n Shop.

My big activity for today may have been winding the warp for Ellie's blanket. I'm almost done with it and it's pretty big. It doesn't seem to have any errors which is a relief. For those who wondered, when I went back to the website I bought the yarn from, they recommended 5 ends per inch so I decided to go with 6 without a sampler, having seen 8. Hopefully, I will not be a wiser and sadder weaver soon.

I also finished "Beautiful Swimmers" which I highly recommend. I see its writing in 1976 as a strong point as the book is becoming a description of a more and more distant way of life. It was fun to read and imagine being baked out on the Chesapeake Bay, coated in salt water, while in reality, we are all a little waterlogged here in New England with a little rain coming before the big storm.

Tomorrow will be a visit to Manchester to get labs checked. I'm hoping for enough white cells that I can still eat yogurt, but am not optimistic. I think I'll finish the StonyField tonight. Such a small wish, hanging onto my white cells for a couple days longer for me. I'm not sure if it really is a useful wish, truly, because I think there's just a certain number of days without white cells--have them now or later. Perhaps I will readjust my wish outward and wish for safety from the storm (whatever storm) for all of us. You won't mind if I use your wish tonight for that, too, will you?

Day 133 - HOME!

Today was notable for more chemo; no problems; de-access the port; go home!

It is so nice to be home now. We stopped at Fred's Fish Daley and got some salmon. We thought it would be a good idea to tea-smoke chicken and grill salmon at the same time so the potatoes that were tucked under the salmon got chicken juice in them and tasted a little bit like chicken potato soup.  Not bad, but not what I had in mind. The salmon, however, was delicious as was the chicken.

Tommie stopped by to say hi after the Music Hall opera simulcast. It was nice to see her, of course. After dinner and Tommie, Terry and I went for a short walk through town and a person who was already preparing for the big storm by drinking a little extra told us he had a few more preparations to make to be completely ready for the storm. Fortunately, he was walking too.

A lot of people have asked me what the rest of the plan is for my leukemia so I'll tell you what I know now. There are a couple of different types of markers and we did not get some of them for me for complicated reasons I don't want to go into. We did get some of them, however. These markers are called cytogenetics and the idea is that a tech in a lab looks at your chromosomes and tries to see if there are any big breaks or segments that are switched with each other or flipped upside down. If this happens, a gene that says "grow, grow, grow" could get stuck next to a different gene's on-switch and the grow gene could get switched on permanently. This is, in a simplified form, what causes cancer, when one gene's on-switch gets attached to an incorrect gene. My cytogenetics were all normal. There are some breaks in the genes that are considered "good prognostics" and if you have those, you only get three rounds of consolidation because it is such wimpy leukemia. If I had had that marker, I'd be done now. There are some breaks that are such "bad prognostics" that you go straight to bone marrow transplant from some one else. I did not have that marker either. I am in the middle, with the rest of the great unwashed, and it is unclear exactly what to do with me.

There is a study in Ohio which has been collecting information to answer just this question. The options under consideration are 1) a fourth round of consolidation (so I'd have one more) 2) an auto transplant. Dr Hill has asked the people in Ohio to please tell him what they their data looks like preliminarily and they have not yet. He keeps joking that I will show up for my next appointment for surprise treatment. I think it's a funny idea, but I am sure he'll get it sorted out before I need it.

Assuming all goes well this consolidation (which I now know is not a good assumption), I will be ready for surprise treatment #4 around Nov 21. Likely, I will be in Leb for Thanksgiving; I never liked turkey anyway, but the sad thing is that I will miss Terry's open studio. Terry has been distracted this year, so it won't be his best ever so I guess that's a small comfort.

Given how smoothly today went for me, I am hoping for another smooth day tomorrow. I hope your tomorrow is as smooth as today, or if today was not so smooth, I hope it's smoother for you. Please be safe and keep your wits about you during the big storm.

Day 132 - a visit by Diane

Today's big activity is that Diane came to visit. We went for a nice 2 mile walk and had a chit-chat and lunch and it was great to see her. Otherwise, a quiet day with napping, catching up on the crosswords and reading taking up the slack.

Chemo round #5 is scheduled for about an hour. I wish it was scheduled for this very second because I want to go to bed now. Then chemo #6 in the morning and then home for this little chemojailbird just after lunch. They tell me that almost no one is discharged from MHMC before lunch; they just can't get themselves mobilized to do it. I will be able in all likelihood to be home in time for dinner so that will be very nice. I will be so happy to see my family, dog, bed and couch.

Tonight is sort of interesting because I have been admitted on Friday night three of my five admissions. It has been very rare for me to stay over from Thursday to Friday. Friday evening at MHMC is a little louder and sillier than the other nights. When I was being admitted on a Friday and part of the general mayhem, I didn't particularly notice, but this time, when I was admitted on Monday and am several days in on Friday, I can't believe how high energy the evening nurses and the new patients coming in are. Geez! Why so happy to be coming in to the hospital? I realize this paragraph sounds very curmudgeonly. Maybe I'm becoming my own grandfather.

For me, for tonight and tomorrow, I am wishing for speedy, uncomplicated chemo infusion and then speedy, uncomplicated flying out of here. I hope for you, too, that you are able to do unhindered any tasks you do tomorrow.

Day 131 - 4/6 chemo's down

Well, I forgot who said it on my last consolidation, but one of the docs said that each consolidation will hit sooner and harder and, yup, they seem to be right. I was so tired that I *couldn't* stay awake during chemo this morning and then after lunch and my very much truncated walk (0.6 or so miles), I felt I had to take a nap *again*. I actually even had a visitor that I slept through which is extremely unlike me so I guess I was really tired!

I did have a couple of local visitors that I was awake for and that was very nice. John, a third year resident friend from a previous admission stopped by with a poster for an ACP conference and I proofread it for him, making little suggestions to make the story clearer. That was fun and I got to chat with him briefly about how he's doing otherwise, how life is, etc. I really liked seeing him.

Marv, the writing coach (?), faclitator (?) stopped by to chat. He had a writing group tonight that he said I could join for the evening and that was fun.

Since there's not much to tell you about today that happened in the outside world, I'll tell you about the state of the marrow space which we have not visited for a long time. At the start of this admission, it was filled with snap dragons of all colors that were really thriving. Somehow it felt important to let the plants know that even though they were being flooded with poison, they were loved and I hoped and expected they'd be back soon. So, I went into the garden and brushed my hand over each of their little tops. This was not what they wanted. Each plant wanted individual acknowledgement and for me to open the top flower on the stalk and put the tip of my index finger inside of it (which I used to always do to snap dragons when I was a little girl). Then, as I floated around the garden (floated so that I did not damage any flowers), I would come upon areas of various sizes on the ground with no growth at all. These areas were areas where the leukemia was hiding and I had to take my (now) real corporeal feet and a shovel that appeared out of nowhere and turn the dirt over to a depth of six inches, break up the clots and leave it alone in order to root out the leukemia. I am always astonished at what comes out of my unconscious mind. The fingers, the floating and the turning over of dirt. What a pleasant way to cure one's cancer!

For tomorrow, for me, I will wish the chemo success in rooting out the hiders. Do you need help rooting out anything? If so, may you get whatever help you would prefer tomorrow.