Dear friends,
Just a very quick note to say that all is well. We have done some traveling this spring—to a conference in Montreal and to a wedding in Santa Monica—and assuming I don’t come down with some nasty medical problem in the next three days we leave Thursday morning for a workshop in Turkey (for which I am still working on my paper—some things never change). I’ll try to write in more detail later—perhaps from Turkey if I have email access—but the basic story is that my medical situation remains “stable.” Various scans reveal no new tumor growth. Side effects of various drugs are tolerable if not always pleasant. Fatigue remains a problem, as does my suppressed immune system. Chemo definitely takes its toll, especially after so many months.
Sorry not to do a full-blown report, complete with jokes and a more detailed description of the medical and non-medical parts of our lives, but things are just too frantically busy right now. At the same time, I know it has been awhile since you heard from me and I didn’t want you to be worried. Phil and I will be back from Turkey at the end of June.
Hope your summer is going well.
Misty
Greetings to everyone!
It has been quite a while since I last gave an extended update on my medical condition—although presumably my brief note of two months ago didn’t get discarded by too many of your spam filters—but now I’ve got quite a bit of news to convey, and all of it is good. So, here we go, with medical information first, then some general news.
In contrast to the first year-plus after my metastatic disease was discovered, which were generally pretty difficult, the past six months have brought good news overall. This has taken three forms:
First, the adriamycin/taxotere treatment finally kicked in and the CEA tumor marker—which had been rising—began to go down steadily. It has been below 100 on the past three measurements, and most recent test value was 71. Granted, the CEA value for individuals without detectable cancer is below 3, but 71 is still a great improvement over its peak of greater than 300, and more importantly, the trend is consistently downward. That is extremely positive news.
Second, about three weeks ago I had a scan done in the KU Med Center’s brand new PET/CT machine. This device with the odd name (we wish they had a FEED/CAT machine, since that seems to be the sole interest of the various felines who continue to live outside our residence) combines in a single image a PET scan—which detects metabolic activity but isn’t very precise at locating it—with a CAT scan, which is good at locating anatomical structures and nasty things like tumors but doesn’t measure metabolic activity. The results still aren’t perfect—no available visualization method can precisely distinguish cancerous from normal issue—but is a significant improvement over the analysis that can be done when the two scans are conducted separately.
The results of this test were also exciting: there was no detectable abnormal metabolic activity in any of the liver tumors, which means that they are either dead, dying, or really quiet at the moment. At any rate, they aren’t growing! The results on the bone metastases were somewhat more ambiguous. This was expected since both bone tumors and the natural processes of the bone filling in areas destroyed earlier by cancer (which is what one of the drugs I take is supposed to do) show a similar pattern of metabolic activity, so we still can’t say for certain what is going on there, other than that there is no evidence of significant further spread of the cancer in the bones. Furthermore, the “impression” (the summary of the radiology report by the doctor reading the films) included the sentence “There are patchy changes in the thoracic and lumbar spine along with the liver that most likely represent healed metastatic disease.” This, along with the improvement in my bone density from bones of an 80 year old to bones of a 50-60 year old (did I remember to report that awhile ago?) suggest that the bones are getting stronger, which also implies healing.
Finally, I have been tolerating the chemotherapy surprisingly well (or else I’m just getting used to it—probably a combination of the two). I lose two or three days a week—treatment usually takes the better part of Tuesday; I’m invariably pretty wiped out on Thursday, and everything about chemotherapy is unpredictable so the rest of the week is never guaranteed either—but the rest of the time usually goes fairly well. I’m even hoping/planning to teach my Middle East politics class in the spring 2005 semester. Sabbatical is, alas, over, but I’m still on partial medical leave in the fall, although I am doing my research and professional service. (After the fall, I will have run out of medical leave so will take a reduction in salary based on whatever percentage of my full job I am able to do. Both my department chair and the KU administration have been extremely supportive, within the constraints of some odd Kansas laws, which has been extremely important to me.)
The other thing that I’m realizing is that with the liver tumors under control, I’m generally healthier than I’ve been in two years. This became very clear when we were in Istanbul in June (more below). I’d been there in September 2002 just before the diagnosis, a period when I’d been consistently sick for at least three months. One day Phil and I walked back to our hotel from a market near the Suliemania Mosque, a trek I’d made in 2002 that had seemed painfully long. Now it was just a pleasant stroll. Things are definitely improving.
Now, keep in mind that we’re dealing with cancer here, and all of this could change at any point with one little sneaky mutation, but for the moment the news looks good. In fact, both my oncology nurse clinician and my nurse practitioner have said that as far as the medical definitions go, I’m officially in “partial remission.” My oncologist, Carol Fabian, is very happy with these results, although she still doesn’t like my travel habits (and was less than pleased when she overheard her Iranian medical resident and her Iranian scheduling person suggesting that since I’d been everywhere else in the Middle East, I really should visit Teheran—hey, sounds good to me!). And it doesn’t look as though I can go back to Palestine anytime soon because of the danger of getting trapped in a closure situation when I needed medical attention. Still, being able to attend conferences, visit friends, take vacations, and so forth is a true joy.
The one downside in this story is that there is a lifetime limit on one’s cumulative dose of Adriamycin, which can weaken the heart. In a rare display of medical consensus, the heart is not on the list of expendable organs, even for chemotherapy. I’m nearing that limit, and in addition, my white blood counts are progressively declining with each round of treatment (I’m on number 9) and at some point will be too low to continue. There are plenty of other chemotherapy treatments available, but we’re nearing the end of this one.
Otherwise, life goes on. We’ve had a splendid summer here for once. The weather has stayed cool and the five-year drought has broken: our pond is full, and there are wildflowers everywhere, including some we’ve never seen before. Kansas had a great wheat harvest, although things were so wet that parts of it sprouted after being harvested, and Kansas farmers weren’t able to locate enough salads to get all of the sprouts eaten. Dry weather, wet weather: Kansas’s farmers lose money. Bring back the buffalo.
With my improved health, Phil and I have done a bit of traveling, both in the US and abroad. We spent several days with some dear friends in central Florida, including KU former colleagues and their wonderful kids, a former KU graduate student, and a member of the International Quaker Working party that traveled together two years ago and jointly wrote a book about our experiences. That book, When the Rain Returns: Toward Justice and Reconciliation in Palestine and Israel was finally published after much delay (due to the complexity of getting 14 very different people to agree on the text, plus issues of copyright and a variety of other events that were frustrating for both the IQWP and for American Friends Service Committee who was the primary sponsor of the project). You can buy your very own copy at www.afsc.org for only $15.00 plus shipping, which is a great deal. Many of us hope to be giving talks in our local settings to help promote it and once the election is over, when people might be paying attention to something else, we hope to see a good amount of publicity about it as well.
In addition, Phil and I also spent a marvelous two and a half weeks in Turkey. We were mostly in Istanbul (Phil had never been there so it was wonderful to be able to show him some of the places I discovered two years ago). The NSF-funded workshop we attended in Istanbul—the reason for the trip in the first place—was fantastic: 30 or 35 interesting, smart, engaged people with creative insights on the topic: “Understanding Global Tensions,” with a focus on the Middle East. I learned a lot, not least from writing my paper, which ended up being on the political economy of rights and resources as these pertain to water, a topic about which I knew very little before I began to prepare for the conference. The institutional organizers were the Mershon Center at Ohio State and the UNDP Human Development Center at Bogozii University—there is no way to praise them enough so I won’t even begin to try. We are now involved in a possible collaborative project with 7 of the participants (including us) that could be quite stimulating—if it falls into place I will write more about it in a later letter. After the workshop we joined with some of the others in the group to make a side trip to Troy (Brad Pitt had left) and down to Pergamon and Ephesus (St. Paul had also left), ending up on the Aegean Sea at a lovely hotel full of mostly Turkish tourists, where we could watch the sun set over Greece.
In addition to the joy of seeing many people I knew already at the workshop and meeting some others whose work I had always admired but not met, Phil and I reconnected with someone we had known back in our Chicago days when we were all activists on Israel-Palestine. We hadn’t seen Karima since a wedding 10 years ago (although we kept up with her activities as a human rights attorney a bit through mutual friends and by seeing/hearing her on “The News Hour” and on NPR)—it was such a joy to discover that we still felt quite comfortable together. We even got to celebrate her birthday in Ephesus, which was pretty cool.
While still in Istanbul, I also had a wonderful adventure trying for nearly a week to get photos of a specific vase in the Istanbul archeological museum for a friend’s research of a certain type of black and red terra cotta vases of the 5th century BCE. In the end, I was denied permission but was allowed to photograph a different vase from the same time period. Unfortunately, the photos aren’t of research use to the friend (I didn’t know enough about her work to be sufficiently precise in what I wanted to photograph, once the vase I hoped to photo was no longer an option), but it was great fun to have the interactions with the museum folks who were extremely gracious even in their refusals.
Assuming my ability to travel holds, I’m going to be at the American Political Science Association meetings at the beginning of September for just two days (mostly for International Studies Association business), and then in Washington for some other meetings a couple of weeks later. Finally, we are hoping to attend the Middle East Studies Association meetings in November, which would also allow me to participate in the board meeting of the Palestinian American Research Center, of which I am a member. (The fact that the MESA meeting is in San Francisco, one of our favorite cities in the country, has NOTHING to do with any decision we might make about attending.…)
Finally, a fun political story: We are in an incurably “red state” (which, incongruously, has come to mean “Republican” in contemporary U.S. political iconography) so we know our Presidential vote will have no impact, just as a Republican’s vote in Massachusetts won’t matter at the presidential level either. It is a crazy system that disenfranchises anyone who holds views different from the majority of the state they live in. As apparent evidence of this recognition that Kansas is Bush territory, two nights ago the Kerry-Edwards campaign train roared through the entire state of Kansas without stopping at all as it went between the swing states of Missouri and Colorado. But when the campaign discovered that over 1,000 people had been waiting at the train station for 2 hours to get a glimpse of the Democratic team (which actually arrived at 1:00 a.m.), they did a quick schedule reshuffling and the Edwards family, including kids, came back today for a big rally. It was pretty amazing, actually: The news reports talked about filling the hastily arranged Abe & Jake’s Landing location with 750 people and several thousand others were outside (where we were, having been at our Quaker meeting until well after the gates to get inside opened). A lot of people outside couldn’t hear, but we were RIGHT in front of the outside group and could hear the speech clearly. Then John and Elizabeth Kerry came and spoke to the outside crowd. A person I didn’t know (but after waiting together for two hours you feel like you do know) had a digital camera and promised to email us photos of the event.
So, with three pages of news, I hope I have satisfied all of you who have been writing me that “We haven’t heard from you for SO LONG!!” I gotta’ tell you, it is a lot more fun to write these updates when life is going well, but I’ll continue to do so in stormy weather as well as during the good times such as right now.
Meanwhile, I hope all is well with you and those you love. Carpe Diem!
Misty
Note:: This is not a classic MistyList posting but it was another public expression, and Misty may have forwarded a link.
Dear Cheryl Miller,
I’m not sure to whom I should address this, but it is an issue about which I feel very strongly. While women should certainly be encouraged to get mammograms, this advice should ALWAYS be accompanied with the statement that mommograms should be a supplement to breast self exams, particularly in younger women whose dense breast tissue makes it difficult or impossible to see cancers on the film.
I speak from personal knowledge. I had regular mammograms from a relatively early age because of very lumpy breasts (although no history of breast cancer and no risk factors except for lack of children). Yet the SAME DAY that I was diagnosed with breast cancer —three separate tumors, one pretty large—at age 38 my mammogram did not indicate any problems.
Indeed, the “no problem mammogram” I had had six months earlier probably gave me false reassurance that the lumps I felt were just more of the same benign lumps I’d had for years. Only the quick action of my internist based on a physical exam got me biopsied and under immediate treatment.
That was nearly ten years ago, which is great, but I have had widespread metastatic cancer for the past two years and I cannot help but wonder if the false reassurance I took from the long string of mammograms that showed nothing was wrong caused me to be less aggressive in seeing my internist earlier than I did and may have contributed to my current situation. I say this without a sense of guilt but only to stress how critical it is that women understand that mammograms are not the be all and end all for breast cancer detection, especially for younger women.
I hope this will be kept in mind during next year’s breast cancer awareness article (which I intend to be around to read!) and perhaps even should be an addendum to the next HealthQuest newsletter.
Sincerely,
Professor Deborah J. “Misty”Gerner
Thank you so much Deborah for your response to the article. I totally agree and am forwarding it to the staff that produces the newsletter. We purchase the newsletter and I know they will be glad to get this feedback. Their goal is to provide exceptional wellness information.
I would also like to (with your permission) include this comment in my Year-Round Wellness distribution list—I write weekly wellness nuggets for this group of 3,300 people and I often post contributions by employees when they give permission. If you’ll let me post your story (and the link it relates to in the original article), you’ll help get the word about this situation. Let me know if I can post it to that group and whether I can use your name, agency, city (any or all of this information—just let me know your preference). And thanks so much for writing. Cheryl
Oh, I almost forgot, here’s the link to your story: >http://www.healthquest.blogspot.com/ Isn’t it great!
Cheryl Miller, M.S., Exercise Physiology HealthQuest Health Promotion
Program 900 SW Jackson, Room 920 Topeka, KS 66612-1251
Web page: http://da.state.ks.us/ps/subject/healthquest.htm
(Note: In an earlier effort, Misty, with the help of her physician, Elaine Kennedy, got Lawrence Memorial Hospital to withdraw an advertisement encouraging women to get a mammogram (at LMH, of course) for “peace of mind.”)
Greetings to everyone!
As many of you know all too well (or have been learning from knowing me) dealing with metastatic cancer has its ups and downs. Last August, when I last wrote, I was in a wonderfully positive period. At present, the news I have to report is not so good.
About five weeks ago, I had a routine CAT/PET as a benchmark for the transition between treatment regimes (from Adriamycin to Doxil—as I wrote about in August, this was an anticipated change as I was reaching my lifetime limit of Adria). The CAT/PET showed that the liver metastases (“mets”) seemed to be dormant/dead/stable, so they are currently under control. However, it also showed some new activity in my head, both at the site on the right side where we knew there were two tumors on my skull, and at a new site on the left side. The CAT/PET wasn’t precise enough to determine whether these were still on the skull (not good but would be dealt with by the same systemic chemo I was taking for my other bone mets), in the meneges (lining of the brain), or the brain (decidedly bad news). So I had a follow-up MRI—which is more precise than the CAT/PET)—of my head. The next day I got a call from my oncologist (not the nurse), which I knew meant the report on the MRI was bad. It turns out there are now four mets in the brain itself.
Needless to say, after the positive news of last summer and my overall feeling of good health, this was NOT what I wanted to hear. There is a certain emotional whiplash involved in going from “partial remission” to “brain mets” in such a short period of time.
I want to explain why this information means a change in the normal ups and downs of the past two years. After all, I have been living with the knowledge that I have metastatic disease since October 2002. So what makes this different? First, any time metastatic disease moves to a different organ or part of the body, that’s bad news. It means that even though we have been able to gain some level of control over the existing liver and bone mets, there are still cancer cells in other places capable of starting new tumors. 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 and from being influenced by many of the chemicals circulating in the blood; 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 brain 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.
Fortunately, there are treatment options. One I have already mentioned: Halotestin. The second is a relatively recent technique called “gamma knife”radiation (google it for details…). This involves zapping the tumors with multiple beams of tightly focused radiation (no actual "knife” involved; this is not surgery). This procedure has a high rate of local success in killing the specific tumors toward which it is directed and usually has limited side effects—in fact it is often done as an out-patient procedure. However, now that the cancer is in the brain itself, the issue is one of controlling new 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—like, yesterday, rather than writing this email??? 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 treatment), a friend who is a recently retired 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), a partridge in a pear tree (hey, it’s almost Christmas, and we do have both partridges and pear trees out here) AND having my case “presented” at a gamma knife multi-disciplinary tumor board, I decided to wait.
The total consensus (and remember, in the United States, doctors treating cancer usually like to act aggressively and quickly with the latest technology) was that the only reason to have the gamma knife procedure immediately 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” (a euphemism for “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.”
Hugs to you all,
Misty
Friends,
After just returning from the Middle East Studies Association meetings in San Francisco (where in addition to attending the usual panels, watching Middle East films, and checking out new books, I had the opportunity to talk with lots of friends), I realized that there are still a lot of people who are unclear about what it means when I say I have metastatic breast cancer. Why am I still being treated by a breast oncologist for tumors in my liver or my bones or my brain, many people asked. So I thought it was time for a brief explanation.
The key point that is tough to grasp is that once a cancer of whatever type exists, it is always that type of cancer, wherever in the body it lands itself. Phil compares it to a dandelion. You may pull up a bunch of dandelions from the lawn, but a few seeds float to the flower beds, find a nice home there, and eventually grow. But they haven’t become tulips or peonies; they are still dandelions. So it is with breast cancer.
Here’s a long but useful explanation from Musa Mayer’s 1998 book, Advanced Breast Cancer: A Guide to living With metastatic Disease, that I think explains it well.
The following is all a direct quote:
____________________________________
When breast cancer cells spread from the primary tumor in the breast through the lymphatic system or the circulatory system to other parts of the body, establish themselves there, and begin to multiply, they are said to have metastasized. Most cancer deaths are due to the effects of metastases resistant to treatment. Metastases must find favorable conditions to grow. According to Drs. Lee Ellis and Isaiah Fiddler, “to grow beyond the size of 1-2 mm, the primary tumors and metastases must develop and adequate blood supply through the process known as angiogenesis.”
“The process of metastasis isn’t random,” explains Dr. Loren Buhle, creator of the Oncolink Cancer Information service at the University of Pennsylvania. “Instead, it is a cascade of linked sequential steps that must be traversed by the tumor cells if a metastasis is to develop. Each step involves multiple tumor-host interactions. To be successful, a metastatic tumor cell must leave the primary tumor and invade local host tissue. It must then enter the circulation, survive in the circulation, arrest at the distant vascular bed, extravasate (or spread) into the organ interstitium (space between the organs) and/or parenchyma (the organ itself) and multiple to initiate a metastatic colony. Interruption of the metastatic cascade at any of these steps can prevent the production of clinically symptomatic metastasis.”
[mg note: This is why I continued to take a variety of anti-estrogen drugs after my initial treatment—to attempt to stop any cells that had survived the radiation and chemotherapy I had already had. And who knows? Probably many were killed off—just not enough!)
Micrometastases, presumed “seeds” from the primary tumor that later grow into tumors at distant sites, are still too small to find on any scan or blood test. Often, it will be years before these new tumor sites grow large enough to be detectable.
[mg note: This is clearly what happened in my case—I was never “over” cancer but the micrometastases didn’t show up for a number of years.]
The rate of growth, or “doubling time” of a cancer is not necessarily constant, either. Sometimes, metastatic tumors will lie dormant or quiescent, until, for reasons as mystifying as the reasons they became dormant in the first place, the tumors begin to grow again. At other times, the disease processes rapidly ad relentless.”
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So I hope that explains matters a bit better. All the various tumors I have in all these locations are still breast cancer tumors; they have just found themselves nice new homes in other organs. Meanwhile, we are doing our best to make them feel unwelcome.
More later.
Hugs,
Misty
Friends,
First, happy holidays to all.
Second, we wanted everyone to know we will be gone from December 18 through very late December 27th. And we will be totally inaccessible except for emergencies!!! Fun, huh? We will be on a small eco-tourism boat cruising the Sea of Cortez (between Baja, California and the rest of Mexico, also known as the Sea of California), watching whales, hiking, kijaking, etc.
As this is a time when people often send emails and make phone calls, we didn’t want you to worry if you couldn’t reach us, especially under the cirucumstances of my unstable health.
If you send an email you’ll get an auto-reply and we will respond eventually. If you call, the answering machine will take messages and again we will return your call when we are able.
Meanwhile, we hope you are all well.
Misty
The eight-month gap here is the longest in the sequence and, as the note below indicates, actually due to good news. The brain mets continued to be stable; the chemo regime—Doxil plus a new drug called Abraxene—was fairly easily tolerated, and the CEA tumor marker wobbled up and down between 100 and 200, though the overall trend was slightly upward after an initial decline.
During this period Misty was able to go to the International Studies Association meetings in Hawai’i and a week-long Quaker gathering (Friends General Conference) in Virginia as well as teaching her class and keeping up various other professional activities such as the MERIP editorial board.
Greetings everyone,
I am sending this short note with apologies to those of you who do not see me on a regular basis and have perhaps been wondering why I seemed to drop out of communication after my November “update.” It isn’t because anything horrible is wrong. Remember: Always assume all is stable if you don’t hear anything! If there is significant news, good or bad, Phil or I will send at least a short note out.
Instead, the explanation is quite mundane: I simply found teaching “Middle East politics” during the spring semester (the first time I had taught since my re-diagnosis) wonderfully fun but much much more time consuming than I expected it would be, despite the invaluable assistance from one of our top graduate students. Then, of course, I was trying to catch up on the rest of my life once the semester was over and I had to convert this list to a new computer system which took HOURS and… You get the picture.
So I will try to write a more complete “update” before the end of the summer but wanted all of you to know that while I continue to deal with difficult medical challenges I am also still quite “alive and kicking.”
Thanks for your continued support.
Carpe diem,
Misty
The fall of 2005 was fairly difficult. Misty was experiencing increasing fatigue and stress on her immune system, and had nearly continuous mouth sores that eventually required some oral surgery to deal with osteonecrosis of the jaw. These were due to the “bisphosphonates” drugs—Fosamax is the best known—she had been taking to counter the effects of the bone mets. This side effect is relatively new—it only became widely noticed in the summer of 2005—but fortunately the oral surgeon we saw in Lawrence had been keeping up with the literature and made the connection immediately. The surgery was successful, but required Misty to stop chemo for a couple of months.
The bone mets were also become increasingly extensive—and painful— during this period; this probably accounted for much of the fatigue.