MistyList: December 2005 to June 2006

12 December 2005

Subject: Quick Misty health update - warning, it ain't great news

Greetings to everyone!

Weather in Kansas is always fickle, but never so much as in the autumn and early winter. This year, for instance, we had a glorious day of deep blue skies and 70 degree F temperatures, followed by a day of bitter winds and a high in the 20s. Several days ago we had lows in the single digits, followed by a snowstorm that dropped 10 inches of fluffy white power on our back porch. Today it was over 50 degrees and beautiful.

So too has my health this fall been erratic. Every time I would sit down to write you something new would occur, with uncertain implications. But now we have hit a point that I think you need to know about.

All autumn my tumor marker (the thing we want to go down) has been going up. At the same time, the PET and CT scans indicated no new growth in my liver (more on that in a minute), brain mets seemed stable, as did the bone mets. But I had to be taken off chemo earlier in the fall because the side effects, particularly the cankar sores in my mouth, had become so severe. With seemingly stable disease, this didn’t seem a big risk for a couple months and was in fact essential as my body was completely worn down. I then developed a dry socket ulcer in my jaw that required oral surgery and a further delay in treatment, including going off the drug (Zometa) that was helping keep the bone mets under control. During that period, my tumor marker jumped dramatically, higher than it had ever been and I began to experience bone pain, something new. A bone scan revealed a number of places of new tumor activity during this period. After healing from the oral surgery, I was put back on Zometa so we are hopeful that will take care of the bone pain, but clearly there is an issue there.

In addition, I have very recently experienced a significant growth in my “girth” without gaining weight, which suggests that there is now new tumor growth in my liver as well.

Meanwhile, I was put on a new regime of drugs for one round and we scheduled an MRI of my head. The results of that came back late last week, revealing, to everyone’s dismay, that the three tumors I had already had doubled in size and that there were seven new tumors as well.

SO: Tomorrow I will be spending much of the day at Research Medical Hospital in Kansas City, MO—the one place in the region that does gamma knife radiation (see earlier message of November 2004 for description—I’ll repeat at the end of this message for newcomers to the list)—and on Wednesday I will have this procedure done, beginning at 6:30 am and lasting all day, with breaks along the way. I'll be home Wednesday night (in-patient brain surgery—weird, huh?)

What this means is still unclear, although it can’t be viewed as good news in any way, except that it IS treatable. And both the radiologists and my medical oncologist are still OK with our going to Israel and Palestine on Monday (!) which at this point is our plan, although of course things remain very much in flux at present.

Once I have recovered from the radiation procedure, I will reassess with my medical oncologist what our next steps should be.

Sorry to be so abrupt with this news and also for not having the time to talk about all of the many wonderful parts of the recent months. But events have moved so quickly that I could only write briefly and I wanted you all to know what was up.

Carpe diem and hugs to all,

Misty

**********************************************************************

From November 2004 letter on initial discovery of brain mets:

I want to explain why this information means a change in the normal ups and downs of the past two years. After all, for more than two years I have been living with the knowledge that I have metastatic disease. So what makes this different? First, any time metastatic disease moves to a different organ or part of the body it isn't good. It means that even though we have been able to gain some level of control over the liver and bone mets, there are still cancer cells in other places. This isn't surprising, but having it confirmed isn't exactly cheerful information either.

Second, chemotherapy cannot cross the blood-brain barrier. The blood-brain barrier is normally a good thing, as it keeps our brains from getting all sorts of nasty infections; however, it also means that chemotherapy, which has been the most successful treatment thus far for me, cannot be used on these mets. The only systemic (as opposed to targeted) treatment is to use hormones. Thus far, hormones have not worked all that well for me (I've been on three different anti-estrogen hormones over the years), but now I am on an androgenic (male) hormone called Halotestin that may help with the systemic aspects of this disease. (When we see four brain mets, the clear expectation is that there are other cancer cells that have not yet “seeded” and turned into discernable tumors that are floating around in the brain. Hopefully Halotestin will kill some—all would be nice—of these cancer cells.)

Finally, the thing about the brain is that it controls everything else in one's body. So a brain met can potentially influence hearing, eyesight, movement, cognitive functioning, breathing, etc. That's why brain mets have always been my nightmare scenario.

Now, within this horrific news, there is some relatively good news. First, the tumors are quite small. The largest is about the size of a pencil eraser. Second, the mets are currently on the surface of the brain (which is the typical pattern in breast cancer) and on the parietal lobe (middle part), which makes treatment with radiation (more on that in a minute) easier. Third, the tumors were discovered by scans, rather than because I am having any symptoms.

Fourth, there are treatment options. One I have already mentioned: Halotestin. The second is something called gamma knife radiation. This involves zapping the tumors with focused radiation using a "gamma knife" (google it for details...). This has a high rate of local success (killing the specific tumors to which it is directed) and usually limited side effects. However, now that the cancer is in the brain itself, the issue is one of controlling the tumors as they flare up. Think of it as playing "Whack-a-Mole" with gamma radiation.

So the big question I would be asking if I were you is: Why isn't Misty getting gamma knife radiation immediately? Believe me, that was my initial inclination. I wanted those things out of my body as quickly as possible. But after extensive consultation at different medical institutions with a medical oncologist, a radiation oncologist, a neurosurgeon (who will eventually do the radiation), a retired friend who is an oncologist, three psychologists (one of whom does extensive research on patients with breast cancer, the other two of whom treat individuals with life-threatening illness), AND being “presented at a gamma knife multi-disciplinary tumor board, I decided to wait. The total consensus (and remember, doctors usually like to act aggressively and quickly) was that the only reason to have the gamma knife procedure (which only take a day, strangely enough) was if I was going to go crazy thinking about the tumors. Since I am not having any effects from the tumors, there will be no improved quality of life at this point. And more important, if we do gamma knife now, there will be no way of knowing whether or not the hormone treatment is having any positive impact in reducing the size of the brain mets. Since Halotestin, like every drug I stick in my body, has side effects, we don't want me to stay on it if it isn't working. The only way to find this out is to wait and watch the tumors.

So I am being very carefully monitored at present. If at any point the brain mets show “progression” (that is, grow), despite the Halotestin, then we move to gamma knife. Meanwhile, it remains an option to be used later. At the same time, I continue to be on my fourth chemotherapy regime, Doxil, to try to keep things under control in my liver. Thus far, my tumor marker is going up, which is not a good thing but is also not unexpected, as in most cases it takes several rounds before a new treatment shows results. If the tumor marker continues to increase, however, we may need to give up on Doxil and try something else. I'm not sure what that would be, but I am told there are “plenty of other options.”

But I have to be honest: Brain mets definitely means that the disease has moved to a new stage with decreased expected survival time (that is to say, expected survival conditioned on multiple brain mets is considerably less than survival conditioned on liver mets alone). On the other hand, I am still, amazingly, externally asymptomatic. At some point the disease, treatment, and/or side effects might start limiting my activities or cause me to change my priorities, but not so far. [(As you might guess, when the brain is involved everything is pretty unpredictable and I am already off the survival curve, meaning I am “supposed” to be dead by now according to median statistics for people with liver mets (something I didn't know two years ago, which is probably just as well)].

One last but very important point. What do I need from all of you, my wonderful friends, family, and colleagues, my virtual (and in some cases local) support team? Actually, it is mostly an issue of what I don't need: despair and hand-wringing, at least not around me. I have always tried to be honest about what is happening, whether positive or otherwise; indeed, most of you have said that is what you want. And I can understand that this information comes hard; it isn't exactly my idea of a great time either. I've been depressed, angry, frustrated, and all the other emotions you can imagine. But meanwhile, life goes on and for the most part life is good.

Hugs to you all,

Misty


15 December 2005

This is a message from Phil (with input from Misty...), though it is coming from Misty's email account since that is where the mailing list is located.

The gamma knife treatment yesterday (Wednesday) went fine, and there were no unexpected medical problems. The treatment took longer than expected due to a technical glitch with the equipment, and the more detailed MRI scan that was done before the treatment uncovered a few additional tumors, but these were small and were added to the list of tumors that were zapped. Misty is still quite tired from the experience but had no problems beyond that.

Misty realized that she didn't make it clear on the previous email note that the trip to Israel and Palestine is something that we had planned for the past six months, and it is part of the research for the National Science Foundation grant that we got last summer. It's a difficult call to know whether or not to go, and we are continuing to investigate the possibility of traveling a little later, but this is difficult given the complications of airline scheduling over the "holiday period" (= Christmas, Chanukah, Kwanza, Eid al-Adha, and numerous variants on winter solstice celebrations, including Christmas). We both want to stress that EVERYONE on the medical side has assured us that there are no problems in making this trip. In favor of going is the prospect of seeing friends we haven't seen for three years, getting some research done, and taking advantage of the fact that Misty's immune system is currently at completely normal levels. The downside is that the last month has been quite physically and psychologically stressful -- brain mets were not in the picture when we planned all of this—and maybe just spending the time resting would be better. We're still trying to work it all out, but our assumption is that we are leaving on Monday as originally planned (returning the second week of January).

Thanks to everyone for their support; we wish that we could respond individually to all of you, but your notes mean a lot.


11 January 2006

Written by Misty and posted by Phil

Hi everyone and a belated happy new year.

Thanks to all of you who have sent cards, emails (especially those with funny stories), and also sad news about your spouses and friends who are also dealing with cancer. Special blessing to the last group; I am sorry I haven't been able to respond to all of you personally. To those who mentioned mutual friends dealing with cancer, I'd greatly appreciate it if you could forward that person's email to me.

We got back from Palestine/Israel last night, safe and sound. It was a fabulous trip: the conference in Bethlehem on creative nonviolent resistance was excellent and will be of great use as part of the joint research (with scholars at OSU, Maryland, and Trinity) I have mentioned previously on the relationship between repression and dissent in five Middle East counties. I was able to do a number of interviews for that project and Phil and I were able to see many dear friends as well. We even managed a quick trip to Gaza before the situation deteriorated and the area was closed to internationals. It felt so “right” to both of us to be there; we are really glad we were able to make the trip. The local Lawrence newspaper somehow found out we were in the region, so I did a long distance interview that resulted in a remarkably decent article that ran on the front page on Sunday about the political implications of Ariel Sharon's health problems. I was originally going to do some additional interviews in the coming days but that is now on hold: See next paragraph.

The only down side to report is that I did have some medical problems over the past three weeks, although they don't appear to be related directly to the trip but simply happened to occur at the same time. The main issue is that on several occasions my temperature spiked up, including on New Year's Day and most dramatically after a lovely dinner with friends celebrating my 50th birthday when I ended up in the emergency room of the main hospital in Ramallah at 4:00 am with a 103.5 degree fever. I felt fine when we got home last night (just tired, of course), but the same thing happened again this morning to a lesser extent. Since I already had an appointment scheduled at the KU Cancer Center (originally to get treatment) we came on in as planned. To make a long story short, no one seems to know why I can getting these fever spikes, which are accompanied by a significant amount of pain (although there are several theories), so I have been admitted to the hospital for somewhere between 24 and 48 hours to get a PET/CT, an MRI of my brain, and to received assorted IV drugs. Not exactly what I had planned for the day after returning home!

Phil, of course, is a dear as always about all this, but it is definitely complicating his life as well, especially since he is chair of the department search committee for a methodology position and the first candidate arrived this evening (Wednesday).

So that is the news from this part of the world. More details abut the trip when I feel better and about the medical situation when I know more.

Carpe diem,

Misty


9 February 2006

When we last checked in with Misty, our intrepid cancer fighter, she was trying to figure out the cause of some dramatic fever spikes that occurred while she and Phil were in the West Bank and again once after they had returned home. Nothing new there, but the plot has thickened. We turn now to the latest news, direct from Vinland, Kansas, the tiny non-town (not even a gas station) between Lawrence and Baldwin, where Misty and Phil make their home.

Q: So, Misty, what is happening these days? Are you teaching and doing research this semester?

A: Yes, I am teaching one class, a small honors version of Middle East Politics with 14 students. They are great people—I have had several of them in classes in the past—and preparing for the course each week gives me an excuse to stay up-to-date on all the aspects of Middle East politics that I otherwise don't follow all that closely. The research piece is going more slowly, mostly because of all the work associated with the Kansas “Coding Camp” workshop we are running at the end of the month.

Q: What the heck is Coding Camp?

A: As you may recall, we have a major National Science Foundation grant in affiliation with three other institutions. In this grant we are looking at the relationship between dissent and repression in five Middle Eastern countries using a variety of different theoretical approaches and methodologies. One key part of the three-year project is teaching students, as well as the faculty PIs (principal investigators) the research techniques that each of us use. Our work at Kansas on the computer coding of event data is the least familiar to most people, so we are conducting a workshop, fondly referred to as “coding camp” between Friday noon and Sunday noon, during which we will give lectures and include tons of hands-on practice experience, so that at the end the group of five faculty collaborators, eight of their students, and two KU students will all know how to use the coding program that we have developed over many years. Each institution will then be responsible for coding one of the countries we are jointly studying. The logistics of this have been far more complicated than we anticipated, partly because the billing requirements at the four different institutions vary dramatically and partly because funding is coming not only from the NSF but from a variety of other sources as well.

Q: OK, that's the research and teaching part of your life. What is happening on the medical front?

A: I was afraid you were going to ask that. First, I spent a couple of weeks on vancomycin (an antibiotic delivered intravenously), followed by two weeks on a similar drug, Zyvox, which is an oral antibiotic, trying to get rid of the infection that was causing the fever spikes. This appears to have worked—I only have my usual low grade fever, not the 2-5 F degree nasty fevers I was getting in December and January—but we won't really know how successful this regime has been until the next week or so, when I am off of all antibiotics. If my fever then spikes again, we know we did not succeed in killing the infection, wherever it is. The location remains a mystery. Despite numerous tests, no place in my body shows that it is infected, but obviously there is, or was, a problem somewhere to cause the high fevers.

The second issue is bigger and of significant concern. I have had pain in my right lower back and my right hip joint for a number of months now. It has recently gotten much, much worse. A series of scans (the usual MRI, PET, CT group) revealed that my hip area, both the bones themselves and the bone marrow, is quite completely filled with cancer and is thus at risk for a fracture at any moment. So this means there are several problems to be solved. First, until the hip joint can be strengthened, I have to stop putting any weight whatsoever on my right leg. That means a walker or a wheelchair at all times. No driving, and certainly no yoga! Second, I will need to have a "resection of the affected bone and replacement with a proximal femoral replacement prosthesis." Think of it as hip replacement-plus: The top part of the femur (thigh bone) is being cut out and replaced with a metal equivalent. Finally, once I have recovered sufficiently from this surgery, I will need to have radiation to kill the cancer cells in my acetabulum (the hip socket of the pelvis), pubis, ilium, and sacrum (think: hip joint and everything around it).

Assuming that no new infection appears when I am totally off antibiotics, I will have this surgery a week from today [that is, on 16 February] at Menorah Medical Center in Overland Park, Kansas. That is where the bone surgeon who my medical oncologist most respects practices, so that is where I am going. One possibility is that once I am cut open, the surgeon will find infection in the hepatic pump that was put into place three years ago to deliver chemotherapy directly to my liver. In that case, the pump will be removed, I will be stitched back up, and the hip replacement will be rescheduled for a time after the infection has been eliminated. Assuming no infection is found, then the surgery will take between 3 and 6 hours, depending on the condition of the femur and whether the socket into which the ball of the femur fits also has to be replaced. I will be in the hospital for 3-5 days. I will then either be moved to a rehab unit or sent home to begin physical therapy. I am told that the physical therapy will be an hour three times a week and last between 8 and 12 weeks: fortunately we can do this in Lawrence. I will begin teaching again as soon as I am able to do so, but of course I will still need to use a walker and will teach sitting down.

Needless to say, this is not my idea of a good time. It will delay both radiation and chemotherapy for an unspecified period (although probably not as long as I am doing physical therapy), it will be quite painful, and recuperation will be time consuming. But there really isn't another viable option. I have to have radiation to my right hip and lower back and I can't do that as long as the area is so fragile and cancer-filled. The surgery carries risks but they are significantly less than the risks of not doing anything.

Q: This doesn't sound good!

A: Well, no, it isn't. But Phil and I are making the best of it and taking one day at a time. First step is to find out if I can have the surgery and if so to get through it. Then there is the recovery period plus whatever new cancer treatment my medical oncologist initiates. With luck, in three months this will all seem like a very bad dream and we will be back living our lives more or less normally—at least as normally as is possible with a chronic, officially incurable and terminal disease.

So that's the news from Lake Woebegon. Wish us luck next Thursday and in the weeks that follow.

Carpe Diem,

Misty


16 February 2006

This is Phil from Misty's computer:

The hip replacement surgery today went just fine: for once things went just as predicted in terms of the amount of time the surgery took (about 2 hours), and the surgeon was quite satisfied with the results. Also there were no problems with the hepatic pump so that was left alone. Misty was awake all afternoon following the surgery, and thus far the surgical pain doesn't seem to be much worse than the cancer pain she was dealing with in the same area earlier.

She will start physical therapy (PT) tomorrow and at that point we will have a better idea of when she will be able to come home (though Monday is most likely). Long term recuperation period is also unclear: typically this operation is done on people a good 20 years older than Misty, and except for the cancer she is in good health, so it is hard to predict based on the usual cases. We'll probably know a lot more in a couple of weeks.

She is in room 406 in Menorah Medical Center in Leawood, Kansas (SW corner of 119th and Nall); the room phone number is 913-498-6466. If you are thinking of visiting, you might call first and see what the PT schedule is since this will take some chunk of her time.


18 February 2006

Just a real quick update here, on Saturday evening. Misty is about 36 hours out of surgery now and things are still going fine: she is either at or a bit ahead of the schedule of various physical tasks she is supposed to be doing. As of a few hours ago she has also been disconnected from all of the various input and output tubes she had been connected to.

She is, however, a whole lot more tired than she anticipated in the period immediately after the surgery. We've appreciated all of the phone calls from folks (and I suspect a few more of you weren't able to get through), but for the time being the challenges of the physical therapy are fairly draining, and she feels less like talking than she thought she would.

We still don't know when—or to where—she will be released: temporal options include Monday and Tuesday; geographical options include home and the Lawrence Memorial Hospital rehabilitation unit. Complications include "President's Day" (Monday), when it is unclear whether decisions involving insurance can be made [non-US readers please note: yes, the U.S. health system is truly this crazy...] We'll keep you posted.

Phil


18 February 2006

Subject: Misty Update: Oops, make that *56* hours

Error in previous message: Misty has been out of surgery about 56 hours, not 36. Can't even do arithmetic at the moment...it's been a long couple of days...

Phil


24 February 2006

Subject: Misty Update 24 February: Misty is back home and doing well

Very quick update from Phil:

Misty came home (via conventional transportation) on Wednesday, and has been doing quite well. We were worried about the stairs in our house being too much of a challenge but they are turning out not to be much of a problem, and Misty is a whole lot happier being back in the quiet and sunny environs of our house in Vinland and out of the institutional constraints of a hospital. A visiting physical therapist is coming out three times a week, and we've gotten the house reconfigured with assorted rehabilitation hardware. She is still definitely in recovery mode (is that a euphemism for "pain"?—well, I suppose...) but things seem back on track at the moment and each day she is a little more mobile.


13 March 2006

Subject: The storm that hit Lawrence missed us; Misty is still recovering

Phil writing from Misty's computer again.

Some of you probably heard on the news that a “micro-burst” of 70 to 90 mph (110 to 145 kph) winds hit Lawrence and the KU campus yesterday, doing extensive damage (but, fortunately, no deaths and almost no injuries—very few people are outside in a college town at 8:30 on a Sunday morning). Fortunately this was relatively limited in scope, and while Lawrence was being hit, there was quite literally barely a breeze down at our house 7 miles to the south. We had an interesting hailstorm later in the day—daffodils weren't too happy about that—but that also passed without serious damage.

Misty meanwhile is slowly recovering from the hip surgery. It is a long recovery and some days are better than others, but the trend is upward and there have been no unexpected complications. As of today she began out-patient physical therapy, and tomorrow she is going to start chemotherapy to her liver again via the hepatic pump she had implanted three years ago, assuming that it still checks out okay. Misty has been able to get out occasionally, and makes it around the house with relatively little difficulty.


2 April 2006

Well, folks, I keep trying to come up with good news to share with you but haven't been real successful of late. Let's see…the weather yesterday was beautiful: warm with blue skies and big puffy clouds, various grasses beginning to turn green, the clover a bright purple. I have some beautiful flowers in the house, including daffodils from our fields and two bouquets sent to me. I've received some delightful care packages of late, including some lovely “fancy food” from a friend of Phil's, a wonderful new cookbook that focuses on cooking for people with cancer from someone I met at Commonweal a couple years ago, and a lovely scarf that yet another person made for me. And I got to teach one class just before Spring Break, which was great.

But on the personal side, things haven't been much fun of late. The hip replacement in my right leg was done a little over six weeks ago. I seem to be healing from that very slowly, although the surgeon says the rate of recovery is pretty normal. Of course, the average person getting a hip replacement is about 72 years old, so perhaps it is understandable I was hoping things would go more quickly. But I still need a walker, I'm doing physical therapy three days a week (with exercises twice a day in addition to that) and I have to be very careful not to violate “hip restrictions” by doing radical things like crossing my legs, bending forward more than 90 degrees (which means no picking things up off the floor or putting on socks without the help of a special gadget…), or sleeping on my side, in one case because of pain, in the other case because of the risk that the right leg will sneak over across the midline of my body. I'm told that I'm about half way through the healing process—at 12 weeks I should be more or less back to normal, but with some continuing limitations.

As a counter to the depression caused by the unexpected and painful hip replacement, I was extremely excited to be attending the international Studies Association annual conference in San Diego on 22-26 March. This is the organization in which Phil and I are most involved (although Phil is also very active in Political Methodology) and for which we have both held various administrative positions. We get to see friends from all around the country, the panels are often quite interesting, and so forth it is a reminder of the broader personal and intellectual community in which we live. This year, things didn't quite turn out as we planned. We flew in Monday so I could attend the Executive and Governing Council meetings on Tuesday before the conference officially begins. It was immediately clear that this trip was too much too soon. I was in a lot of pain and hadn't realized just how many modifications we had made in the house to accommodate the hip replacement surgery.

Then my fever started spiking again. So Phil got on the phone and found (relatively) reasonable one-way tickets back to Kansas City, leaving Wednesday morning. My oncologist wanted me to stop by the cancer treatment center when we arrived back for what I figured would be a few hours. No such luck. After around 22 hours there, I was admitted to the KU Med Center hospital where I remained until last Tuesday receiving IV antibiotics, IV pain medicine, and getting yet more tests unsuccessfully attempting to track down whatever infection is that keeps causing these fever spikes. For a while the pain meds were too high and I was having mild hallucinations (brief conversations with people who weren't there, for example) and sleeping a lot. I couldn't get any work done, which I found tremendously exasperating as I am so far behind with grading—let alone research—that it is embarrassing, frustrating, and annoying.

Because we hadn't told people about this latest hospitalization—we kept thinking it would end any hour—it was also a bit lonely. After nearly a week, about all we learned was that the hip replacement seems to be properly placed (good news) and that there are three (new) tumors in my adrenal glands (bad). In the latter case, this means taking a steroid to make up for the hormone that the adrenals are not producing (eat your heart out, Barry Bonds...).

So last week I didn't teach again (Phil filled in one day and I had an exam scheduled the other day which a colleague graciously agreed to proctor). This week should be better, however. I plan to be in the classroom again—hurrah!—and we have made progress in finding the correct level of pain medication, within the constraints we face. (On the down side, we've learned that palliative treatment of the bone metastases would have significant negative effects on my immune system and the production of essential bone marrow, which further complicates pain management.) Phil and I have to drive to KU Med every evening so I can continue to get IV antibiotics; how long this will last is unclear. (Yes, it would make more sense to do this at home or at Lawrence Memorial Hospital's cancer center, but insurance restrictions and LMH's hours of operation make this impossible.)

With all of this going on, I confess I have found it difficult to stay cheerful; it is all quite overwhelming. But Phil calculated that I have already managed to live longer than about 90% of people who have had a diagnosis of liver metastases resulting from breast cancer and much of that has been good time. So I am trying to focus on this and on living in the moment rather than freaking out over the future, which admittedly doesn't look particularly promising. As always, support but not despair is what I most need from my friends you have been great over the past three and a half years and I appreciate it deeply.

Carpe diem,

Misty


noon, Thursday 25 May 2006

Subject: Misty update 25 May 2006: stopping treatment
[from Phil]

Well, this is the MistyList message that we all knew was going to come sooner or later, and now it is here. My apologies that this is relatively brief and the fact that some of you I would have liked to talk with one-on-one are getting this by email, but, as you might expect, I've been a bit busy of late.

Misty started having atypical symptoms about four weeks ago; initially these appeared just to be side effects of a drug she had previously tolerated well (Xeloda). Meanwhile her CEA tumor marker was increasing exponentially. About a ten days ago she began having vision problems, and had a new MRI scan of her head done immediately. This revealed extensive tumor development in the meninges (lining of the brain); none of this had been present on a scan eight weeks earlier so obviously it is rapidly growing. "leptomeningeal carcinoma" is the technical phrase: Google it for details; prognosis is quite grim.

Her condition has since deteriorated very rapidly. We tried some whole brain radiation therapy—basically the only available option since systemic chemotherapy doesn't cross the blood-brain barrier and the tumors are too thick for chemotherapy to the cerebral-spinal fluid to be effective—but it had no discernible effect. The radiation oncologists concluded that the best outcome from the radiation would be to stabilize the situation (and there was no guarantee of that), and after all these years of saying "stable is good", her situation was such that stable was not good.

Misty has a living will specifying that aggressive measures not be used to sustain her life if she experiences irreversible mental deterioration. On Tuesday, with the complete agreement of her oncology team of eleven years, in consultation (and consent) with her parents and closest friends, and with Misty in the room during the discussion with the doctors, we decided to stop curative treatment. Responsibility now switches back to her primary care physician in Lawrence and in-home hospice, which will focus on pain control and comfort. (The clinical effects of stopping treatment are negligible since it wasn't working anyway; if she unexpectedly does improve, we can just pick up where we left off)

Misty goes through periods of "confusion" but also has periods where she is fairly lucid, though these have become less frequent in the last three days. She is aware of the fact that she is dying and—this will come as no surprise—not real happy about it, but seems to be gradually becoming more at peace, or just plain worn out. She is decidedly happy to be no longer making the almost daily trips to the Med Center. Misty is not in significant pain (and is still on the same substantial pain medication as before)—in fact I think the pain is lessening as a combination of the end stages of life, and possibly some effects of strontium-89 treatment for the bone pain (she had this about two weeks ago). She is still mobile and able to take care of herself, though her eyesight and balance are definitely deteriorating and over the past 36 hours her breathing has become noticeably more shallow and irregular.

The tumors have almost completely spared the frontal lobes of her brain, so her personality and cognition are quite intact when she is able to focus. Until about four days ago, despite the rather substantial tumor load, she had preserved a remarkable amount of her ability to exercise those primordial skills that we have honed through millions of years of evolution: cell phone, Palm Pilot, touch-typing, and web browsing. She is now sleeping increasing amounts, nearly around the clock (again, this is a recent development). We've got excellent social support here, she is never alone in the house, and unless something changes dramatically (and there is no reason to expect this given the location of the tumors), she should be able to die at home, which was her wish.

So as I write, Misty is in our regular bed, sleeping quietly, nestled in a pile of pillows. It is a beautiful early summer day and she looks out through floor-to-ceiling windows into the forest that comes almost to the house. Woodpeckers, bluejays and assorted other birds flit through the trees (attracted by the feeders on the porch...as are racoons...). I can keep the windows open at night and early morning, and the overhead fan in the room generates a gentle breeze; it gets hot outside in the afternoon but the air conditioning in the house is keeping that under control. I have a CD of Tibetan chimes playing most of the time—Misty asked for this—and there is a small water fountain in the corner of the room we brought in from her office. This is just as Misty wanted things to end.

At the present time, everything we're seeing is consistent with a fairly rapid progression to death; this is also the assessment of her long-time oncologist who has seen a lot of such cases. If I may say this without sounding too much the geek, dying is really quite a remarkable thing to be involved with—this is the first time I've been through this—and given that we are go through it sooner or later, not to be feared. We all wish it wasn't happening to Misty at age 50—and she in fact fought this tenaciously to the point of living longer than 95% (or thereabouts) of people with her initial metastatic diagnosis—but "stuff happens."

This "mistylist" email list is actually just a list of addresses Misty keeps on her office computer, so I can only send these messages from her account. Unless something dramatically changes, she will not be answering email; if you'd like to send something please address it to me at schrodt@ku.edu. Misty is sleeping most of the time now but I have been reading letters and emails to her now and again. She is not taking phone calls and at the moment I'd prefer not to as well, as I'm trying to keep the house quiet.

I will, of course, let this list know fairly promptly when Misty dies. These things are always very difficult to predict, but her symptoms (and the assessment of her doctors) are consistent with a fairly rapid, and also quite peaceful, death, probably in a matter of days. Misty, however, has never failed to surprise us, particularly when survival is concerned, and nothing is over until it is over.

Thanks to all of you for your assistance, thoughts and prayers over the past 44 months, and I'll keep you posted.

Phil


10 June 2006

Subject: MistyList Update 10 June: she's still hanging in there

This is Phil again. As I suggested might happen, despite the severity of her illness, Misty is still alive, although she has shown no improvement and is slowly getting worse. Given the suddenness of the initial changes, I get the impression that medically this survival comes as a bit of a surprise, though given the fact that Misty has defied all of the odds so far, perhaps it is less surprising.

Her situation continues pretty much as I last described it. She is still at home, still in no pain as far as we can tell (her ability to speak is very limited due to the location of the tumors), and she is still able to walk short distances assisted (again, the tumors have impacted this substantially). A hospice nurse comes in two or three times a week (and is available on call at any other time) just to see how things are going, and appears completely satisfied with the situation (I'm also quite happy with the hospice people). I'm at home almost all of the time, but occasionally get out when either a friend or the hospice nurse is there: we've got a fairly systematic rotation set up for people to assist me and this is holding up well (and apparently so am I).

Misty is slowly deteriorating, with an emphasis on "slowly." She is sleeping a very large amount—recently around 22 hours a day, and most of this very deep sleep. She gets up occasionally and walks with assistance around the bed or, occasionally, the room: I've installed several grab bars [Martha Stewart take note: these are excellent room accents!] to assist in this. She is eating very little, though still drinking some. We have not had to increase her pain medication, and consequently this can still be increased quite a bit more if necessary.

The hospice nurse said that as of Thursday, Misty was developing a number of symptoms that would be indicative of death occurring fairly soon IF those were observed in an older person. However, apparently these signs are not reliable indicators of impending death in a younger person (by hospice standards, Misty is young), and more generally, except for having extensive cancer, Misty was quite healthy going into this. So while she could die at any time, she may also live for a while longer—it is basically impossible to tell, particularly since we are no longer doing diagnostic tests.

I've appreciated all of your emails, and have read some of them to Misty, and will be reading others if she seems ready for them. As before, I'm sending this email from Misty's computer and her email account, since that is where this "list" resides; if you would like to contact me, my email is schrodt@ku.edu.

Phil


20 June 2006

Subject: Mistylist: Misty died on Monday 19 June

Misty's long struggle with cancer has ended: She died shortly after noon on Monday, 19 June. Everything worked to the end: she was in her own bed, in no pain, with no tubes, and looking out into the woods on a sunny day with birds flitting through the trees. There were sufficient obvious changes in her condition that it was clear that death was imminent, and I was able to spend the last couple of hours talking to her and holding her hand. Her body rested in the house for the remainder of the afternoon as friends came out to bid her farewell, and then was removed for cremation.

Misty's final days were characterized by a very slow but very steady decline. She stopped eating about two weeks ago, and pretty much stopped talking at that point as well. She stopped drinking about five days ago—as all of the hospice literature notes, water seems so fundamental to our lives that it is hard to imagine not wanting it, but Misty was decidedly unambiguous about this. We had to juggle the pain medications a bit to accommodate the changes in her system, but basically kept the same levels she had been on for the past three months.

She slept non-stop for most of her final 48 hours, and then in the last few hours her breathing pattern changed significantly and her pulse became quite weak. When the hospice nurse arrived, I left the room to brief her on the situation, and when we came back perhaps five minutes later, Misty had died. This pattern is quite common—after a long period of being accompanied, an individual will die when they are alone, and for some reason I expected that this was the path Misty would take.

Some of the friends who had been most closely involved in her care began arriving within minutes. We dressed her body in the outfit she had planned to wear to the end-of-the-year dinner for political science honors students (she was too sick to attend)—needless to say, it had a nice Middle Eastern motif, with a Palestinian scarf—and people came out throughout the afternoon to pay a final visit.

Having now done this home hospice experience all the way through to the end, I can't imagine doing things any other way. Granted, it is not possible for everyone—Misty's pain could be readily controlled with medication, she experienced no other symptoms that required continuous professional attention, and I was able to drop everything in the final five weeks to concentrate on her care (classes ended two days before the diagnosis of the meningeal tumors that would eventually kill her: whether she actually had some control over this is anyone's guess). I also had the support of a reliable but unobtrusive hospice organization for those matters where I needed professional assistance, and a committed group of our friends who provided companionship and the occasional respite to allow me to get out of the house. If the Boomer generation manages to return the dying process to the home, where it has been welcomed for most of human history, that small contribution to the human experience will perhaps provide some slight compensation for all of the idiotic things our generation has done (bell-bottoms, disco, light beer, war in Iraq, etc)

The KU news release on Misty's death is at

http://www.news.ku.edu/2006/june/19/gerner.shtml

The local paper also did a nice story at

http://www2.ljworld.com/news/2006/jun/20/mideast_expert_dies_cancer/?ku_news

[front page, state-&-local section, above the fold...]

A memorial service will be held at some point in the future, probably after classes resume at the University of Kansas in mid-August: I will send details on this when they are available. Misty would undoubtedly appreciate whatever charitable contributions you might want to make in her memory, but had particular interest in the "Ad Mundum" ("to the world") fund at her undergraduate alma mater, Earlham College (http://www.earlham.edu/). This is an endowment that we established a number of years ago to provide need-based supplemental funding to undergraduates doing study abroad. Earlham's contributions website

https://www.applyweb.com/public/contribute?s=EARLHAMC

could presumably be used for this.

As before, I'm sending this email from Misty's computer and her email account, since that is where this "list" resides; if you would like to contact me, my email is schrodt@ku.edu.

Thanks for all of the long-distance support over the past 45 months (or 11-1/2 years, if one goes back to the original diagnosis) and again, I'll let this list know when plans are firm for the memorial service.

Phil