First, my apologies for the impersonal mass mailing; it seemed the most efficient way to get information out to a large number of people.
Also, some of you will already know at least part of what is contained here; in that case you might want to scroll to the end where you will find a question.
Earlier this month, Phil and I learned that the breast cancer we all thought was a distant memory (I was originally diagnosed in December 1994) has metastasized to my liver, skull, and spine. (A tiny bit of good news: There is no evidence that the cancer is in my lungs or brain.) This Friday, 25 October, I will have a five hour surgery to get a more complete biopsy of the cancer, remove my gall bladder, and implant a port to allow treatment directly to my liver. I’ll be in the hospital (KU Medical Center in Overland park, Kansas) 3-5 days, depending on a bunch of stuff. After I have recovered from this, I’ll begin receiving chemo administered both systemically (to deal with the bone lesions) and into the liver. Additional treatment will depend on what we find out from the full biopsy.
In terms of what this “means"—well, it certainly isn’t good news. As you probably know, there is no such thing as a “cure” for metastatic disease. On the other hand, with a positive response to treatment, my oncologist tells me I may still be around 5 years from now, by which point perhaps we will have some new strategies to deal with the problem. So I am trying to think about this as simply a chronic disease that I will have to learn to manage rather than as an immediate death sentence. But it is difficult; no doubt about that.
Many people have been asking to be kept informed about the surgery and other medical news so we have decided to set up an email list explicitly for that purpose. Our thought is to send messages only when there is actually something significant to convey. If you would like to be included on this list, please let one of us know asap. This is an “opt in” list only. We won’t include you unless you ask us to. And we won’t be offended if you would prefer not to receive these updates.
Please keep us in your thoughts.
Misty Gerner (firstname.lastname@example.org)
Phil Schrodt (email@example.com)
We were hoping that the whole procedure could be done laparoscopically, but the surgeon has indicated that this might not work, and it didn’t—a pesky little blood vessel didn’t cooperate with the plan and they had to do an incision to take care of it. Bad news is that this extends the recovery period (and, Misty reports, hurts); good news is that since they had the incision anyway, they were able to use a more extensive test to confirm that the chemo port was working just as intended, which involves florescent chemicals and a black light. The port is working correctly; it is not clear whether the black light also detected the presence of any Jefferson Airplane posters in the liver.
Misty was out of recovery and in a room by about 10 p.m.; she was feeling quite sore but has got one of those gadgets that lets her self-administer pain medication. I’m heading back over there (=KU Medical Center in Kansas City, about an hour from here) as soon as I’m sure this message has gone out. At the moment we don’t know how long she will be in the hospital (and out of email contact) but I’m guessing we’ll find out more about that later today.
Many thanks for all of your kind thoughts, prayers, and best wishes, and we’ll keep in touch.
Late yesterday afternoon Misty was released from the KU Med Center and is now home. Given that the surgery required a 7-inch incision rather than being done laparoscopically as the surgeon (and we) had hoped, the length of the hospital stay was more or less what was expected. Recovery from the surgery, while slow, is proceeding steadily. She is going back over on Tuesday to start the chemotherapy but this is done via the pump that she now has installed so it is an out-patient procedure.
Little else to report over the past week. Misty has not been reading email (and may still not do so for a few more days) and therefore has not had a chance to respond to your many kind notes, but we do appreciate that so many of you are keeping us in your thoughts and prayers.
One other thing: we’d emphasize once again that this is being treated as a chronic condition—albeit one requiring significant lifestyle changes—not as a hospice situation. Misty is going to die at some point, but then so are we all. There is no indication that she will be doing so any time soon. So we’re looking for positive vibes, not condolences. Thanks for your understanding
Many thanks to you all for the cards, email messages, flowers, candles, prayers, books, visits, phone calls, care packages, interesting newspaper articles, and warm wishes. All of these contacts make a huge difference and give me strength. My apologies that I haven’t been able to respond individually to each of you—I am hoping as time goes by to have more energy to do so.
I have been home from the hospital for a bit over a week now. It has been both easier and more difficult than I anticipated: Easier because I have been healing well from the surgery, I haven’t had as much pain as I feared, and I love being in my own home; tougher because my energy level is still quite low, I am struggling with both depression and nausea from the chemotherapy to my liver (which means I don’t have an appetite and have to force myself to eat), and I don’t have a good idea what to expect in the days and weeks to come. I’m so organized and future-oriented that it is strange not to be able to plan more than a day or two in advance.
Every day I try to do at least one activity beyond the basic requirements of coping with my illness. In recent days these have included attending a reception for the students and faculty of the MA in international studies program that I directed for two years, looking at a house that two colleagues are considering purchasing, and hosting visits from a variety of friends. Tomorrow’s activity is less thrilling: a trip to the dentist! But then Tuesday I will get a massage.
Several people have written saying “I’m worried because I haven’t heard from you for a week.” So we want to remind you that Phil or I will only post messages when we actually think there is something new to report. If you don’t hear anything, ASSUME ALL IS WELL (or at least as well as can be expected under the circumstances).
Thanks again for your support.
Well, when I set up this list, I promised that I wouldn’t overwhelm you with messages, so this is the first update in a while. Once again, keep in mind that if you don’t hear anything, you should assume that nothing has changed. Also, if you want to be dropped from the list, just send an email to that effect.
As of yesterday I finally have some results to report regarding a radiological assessment of the effects of the chemotherapy. These appear to be at worst neutral and possibly positive.
Depending on who is comparing what to what (there are some differences between the Lawrence and Kansas City radiologists), the tumors in my liver and skull appear to be stable, and one liver tumor may have shrunk significantly (although it is difficult to tell since tumours exist in three dimensions and only get measured in two). There was no assessment of the cancer along my spine. Since cancer only kills you when it grows out of control, stable is a good thing, although obviously I was hoping for more a dramatic reduction in size and number. My oncology team, however, is definitely not concerned about the results, and apparently is expecting that the response will be slow given the nature of the tumors. So I keep telling myself, “Stable is good.”
Meanwhile, I remain asymptomatic with respect to the cancer itself. The major side effects of the chemo have been greater levels of fatigue—I’m sleeping a lot more than I’m accustomed to doing—some modest loss in ability to concentrate, and a bizarre but totally expected and common inflammation of my hands and feet that leads to cracked skin and a bit of pain. But I’ve only needed to use anti-nausea medicine occasionally once I recovered from the initial surgery, and I’ve still got my hair (so no bright African head scarves at the International Studies Association meetings this year).
I’m on 40% medical leave this semester, with no teaching but continuing all of my research and service responsibilities. I’m using that time to rest more, deal with medical matters (amazingly time consuming, actually), and try to catch up on all the stuff I didn’t do in the fall. The ISA is meeting is in Portland in February and in March Phil and I are going to Switzerland at the invitation of a group that is using our event data software so I’m keeping plenty busy. Phil and I both were granted sabbaticals for next year, so we will have that time free from teaching.
Coincidentally, today’s issue of the Washington Post had a nice article on dealing with cancer as a chronic condition:
From Killer to Chronic Disease: Drugs Redefine Cancer for Many (Rob Stern, Wednesday, January 29, 2003; Page A01)
This does not directly address metastatic breast cancer, since that condition cannot yet be routinely controlled to the level of just being chronic, but this is clearly where my oncology team is hoping that we’ll end up.
So that’s it from this end. I hope you are doing well and staying healthy. I look forward to seeing many of you in Portland
Greetings once again. All of a sudden it is spring here: we have daffodils blooming everywhere, the redbuds and pear trees are beginning to flower, and it is still light outside even if we don’t get home until six. Now, if only it would rain! Although we have received a little moisture in recent weeks, the drought continues unabated. But few are paying attention at the moment: The place has gone crazy with Final Four fever as the Kansas Jayhawks go after their first national basketball title since 1988.
The past two months have been a bit of a roller coaster. On the positive side, I have moderately favorable test results to report. The not-so-good piece is that I continue to have intestinal problems and have had several difficult weeks fighting a nasty opportunistic infection. Details follow—and remember, you can always be removed from this health update list by just sending me an email.
February went relatively well. The weather was generally mild and I had sufficient energy to get a bit of work done, including writing a case study with one of my graduate students and an analytical paper with Phil and the same graduate student. Unfortunately, I also had two weeks of fairly severe abdominal cramps, causing my oncologist to decrease the amount of chemotherapy I was receiving. In the final week of February, we headed off to “Misty’s big post-diagnosis adventure”: a week at the International Studies Association meetings in Portland Oregon, followed by a week in Bern and Zurich with the Swiss Peace Foundation, a group that is using some of our methodology and data for conflict early warning. (The implanted chemo pump has a bit more than a two-week capacity, so it got filled the day before we went for Portland and the day after we returned from Zurich.)
Both trips went OK; although I was probably functioning at about 30-40% capacity and got tired easily I was able to accomplish much of what I wanted to. In Portland this involved lots of meetings, giving a paper, seeing friends, and participating in a short antiwar demonstration, while in Switzerland it meant attending a day-and-a half long workshop and wandering around Bern and Luzern, both lovely towns with wonderful architecture and scenery.
Upon my return, I started running a persistent (and sometimes quite high) fever and more generally felt lousy. At first we attributed this to jet lag, exhaustion from the trip, and perhaps a cold (everyone else seemed to have one), but it just wouldn’t go away. As the fever persisted, my oncology team became more concerned and two weeks ago started hauling out the really heavy antibiotic treatments, including intravenous vancomycin twice a day. (This was described by one doctor as “the atomic bomb of antibiotics").
Well, like some other bombs, it didn’t seem to impress whatever was causing the fever, so we spent several days getting numerous tests on assorted bodily fluids, leaving my arm looking something like a pin-cushion. Finally one of these tests proved positive, indicating that I have an infection from cytomeglovirus, a member of the herpes family. Turns out that something like 60% of the US population have been exposed to this virus, which can hang around in the body indefinitely and then pop up when one’s immune system is compromised. It usually is only a problem for people with HIV/AIDS, organ transplant recipients, and people undergoing chemo. Guess what—that’s me! We were all getting a bit worried about the continuing fevers, so actually having something to blame is a good thing. Treatment is another intravenous drug, so every morning and evening I spent about 90 minutes at the emergency room of Lawrence Memorial Hospital getting it dripped into a midline IV in my arm. (The midline goes about 8 inches up into a vein in my arm and can stay in place for 6-8 weeks, in contrast with a regular IV that lasts only a few days.) It appears this is actually working—my fever is lower, if not yet normal. IV treatment continues for a few more days and will be followed with two weeks of oral drugs.
So, between being tired, feverish, in some pain, endlessly needled, spending a lot of time hooked up to intravenous drips, and a bit concerned, the last three weeks haven’t been all that great. (Not too thrilled about the war in Iraq either.) With all this going on, and given that I am still having severe diarrhea (in reaction to the chemo drugs, the antibiotics, and the antivirals), my oncologist has concluded my body needs a major rest. So I have been off all chemotherapy for two weeks and won’t resume for another two weeks. Hopefully, by that point my immune system will have recovered, I will be able to tolerate food without major abdominal cramps, and I will have a red blood count vaguely resembling someone who is alive.
However, on the cancer front more specifically, the news seems generally good. The most recent scans show that the largest of the liver tumors (the one they are monitoring) is continuing to shrink, albeit very slowly, and the bone tumors don’t seem to be getting any larger. My oncologist keeps telling me that she is not worried about the rate of decrease so I try not to be either.
So that’s it from Lawrence. I hope you are doing well.
Well, we’re back to the KU Medical Center. Yes, just when it was again safe to travel through Lawrence without fear of being trapped by rioting basketball fans (they sobered up after our 81-78 loss to Syracuse in the NCAA championship game), Misty has returned to Kansas City for some full-time attention.
Misty was having abdominal pains that were getting worse, and not responding to pain killers, so the folks at the Cancer Center decided to haul the ole‘girl back to the shop. She is going to be in the oncology unit for a couple of days until doctors figure out what is going on, and meanwhile they can use more sophisticated pain control. She is in room 4212; the phone number is 913-588-4232. Not sure how long she is going to be there; we’ll keep you posted.
Thanks for your support, especially over the past few days.
I came home from the KU Med Center late yesterday , sat outside on the deck for awhile, then went to bed and slept 12 hours! Guess I needed the rest.
The folks at the Med Center were great. Their first concern was to deal with the pain; only after we were making progress on that did they begin trying to track down its source. The best news is that the pain is definitely under control. I now have a prescription for a pain patch that releases Fentanyl, an opioid analgesic, continuously. I have been wearing it for nearly three days and it does work. And I have additional on-demand pain medication. As a result, I feel better than I have for several months.
We have also added to the long list of diseases I do not have. The infectious disease people at the Med Center had great fun, it seemed, testing me for dengue fever, cholera, yellow fever, malaria, bilharzia (schistosomiasis), hepatitus, etc., “just in case …” The frustrating thing is that we still don’t know why I was experiencing such pain; however, various oncologists have assorted theories that cannot be proven but that involved conditions that do not represent a health risk to me. Tests are ongoing, but for the moment we have to live with a mystery.
Meanwhile, I continue to get treated for CMV (the wonderful opportunistic virus I wrote about a week or so ago); that will continue for several more weeks until my fever is totally normal.
So we seem to be past this particular bump in the road. Stay turned for more “Adventures in Living with Cancer,” available only from “Mil and Phisty productions."
It is July in Kansas, which means it is hot, hot, hot. Actually, today isn’t that bad, but for most of the month it has been in the high 90s or 100s, with overnight “lows” in the mid-70s. The drought continues; however, there was enough rain in the spring that we had a spectacular crop of wild flowers in our fields and were able to cut wonderful and fragrant bouquets for the house. Now we have tomatoes and basil—yum!
I know that it is time to write a health update when I start getting lots of email notes saying “we haven’t heard from you for awhile but hope everything is OK.” Actually, I have lots of good news to share and only one bit of not-so-great additional information to pass along.
OK, so what’s the not-so great news? I hear you asking. Let’s get that out of the way first. I have been having a fair amount of pain at one particular place in my lower back that didn’t correspond to the location of any of the known metastatic lesions on my spine or sacroiliac joint. So I had an MRI of my spine and pelvic areas, which had not been done previously, to try to figure out what was causing the pain. Turns out that an MRI picks up a lot more detail than a CT scan does and what it picked up in my case were many more lesions in my bones than we originally thought I had: all along the spine, in my pelvis, in my femur, etc. There is no reason to think this represents disease progression; instead, it simply means that my body has (and has probably had for some time) even more cancer than we previously realized. While this certainly isn’t good news, it isn’t disastrous either. It is simply additional information, although information I probably could have done without!
Now the positive stuff: The CEA tumor marker (which measures the level of carcinoembryonic antigen in my bloodstream) has decreased from 300+ in December to 133 this month (although I should also explain that “normal” is less than 3) and the largest of the tumors in my liver continues to shrink, albeit very slowly. I am currently tolerating treatment easily; in fact, I feel great! I have good energy, I am sleeping well (except when the heat makes this impossible), I am not taking any significant pain medication at the moment, I’ve lost some weight, and my spirits are positive. In the past two months I have completed revisions on the second edition of Understanding the Contemporary Middle East (which I am editing with Jillian Schwedler), sent an article out for review, and am working on a variety of other projects. In short, if you didn’t know that I have this wretched disease you certainly wouldn’t be able to tell from looking at or listening to me.
In a way, this makes sense. Last summer I was sick because of the liver metastases, although we didn’t know it at the time. Then in the fall there was the shock of diagnosis and the major surgery to implant the hepatic pump. I wasn’t really recovered from the surgery when I came down with cytomeglovirus. And there was the horrible horrible GI pain that landed me in the hospital (but whose cause was never determined). So this is the first time in a year that everything in my body—except those parts affected by cancer, obviously—is functioning normally.
In addition, I gained a tremendous amount of physical and emotional strength from the week I spent at Commonweal, which is located on a bluff overlooking the ocean outside of Bolinas, California (about 75 minutes north of San Francisco within Golden Gate National Recreation Area). Commonweal (www.commonweal.org) is a nonprofit organization that works in the areas of health and the environment, with programs for, among other groups, physicians, for children, and for people dealing with cancer. The group is kept very small (8 or 9 people) and the staff is large so that there is a tremendous amount of support and individual attention provided during the week. Our group—which was full of quite wonderful people—included a woman with pancreatic cancer and her husband, a woman with a brain tumor and her husband, two women who had had breast cancer but had finished treatment, a young man with skin cancer, and me. I was the second youngest; several people were in their 50s, and one couple was in their late 60s or early 70s I would guess.
The week was filled with yoga twice a day, including asanas, deep relaxation, pranayama (breathing practices) and meditation; two-hour long group sessions every morning led by an amazingly gifted psychotherapist who used imagery, meditation, song and dance, and other activities in working with us; three (you read that right) massages; a one-on-one session with the therapist; sand tray work; walks on the nearby beach; discussions of sacred space, death and dying, pain and suffering, traditional and complementary treatment options; writing and talking; fabulous meals; using the Commonweal library… There are no televisions, radios, or newspapers, so we really were “away from the world” which was just what I needed. The waiting list to participate in a Commonweal cancer help program is long so I feel tremendously fortunate that someone canceled and I was able to attend in June (rather than my originally scheduled time in October). After the retreat ended, Phil and I met in San Francisco and spent several days wandering around that beautiful city, visiting museums and parks, eating great food, and enjoying being together.
So that’s what’s happening here. As always, I appreciate all your support, in the myriad forms it takes. I am truly fortunate to have so many caring friends. Thank you.
I hope your summer is going splendidly.
At long last, the heat has broken, ending the driest summer in Kansas recorded history. Four days after a mid-afternoon temperature of 106F (40C), we had a mid-afternoon temperature of 66F (18C). Over Labor Day weekend, it rained almost continuously, providing 6 inches (15+ cm) of badly needed moisture. Another 2.5 inches (6+ cm) of rain during during the past several days still leaves us well below “average” for this time of year but at least means there is hope for next winter’s wheat crop. Our pond is no longer dry, the birds have begun to return to the nearby wetlands, and the sunflowers are absolutely glorious.
With the change in weather have also come several changes in my treatment regime. Shortly after I last wrote (23 July), I learned that my CEA tumor marker (which, you will recall, measures the level of carcinoembryonic antigen in my bloodstream) had jumped fairly dramatically in a short period of time, after having declined steadily for about six months. Not a good thing and puzzling, since this result is inconsistent with all the other bits of evidence such as blood work and CT scans which remain positive. Our first thought was that it might be a false result so we redid it and came up with the exact same outcome. So no reprieve.
CEA is commonly used as a marker for colon cancer; we are using it because according to the common marker for breast cancer—CA 27.29—I’m free of disease (don’t I wish…). So another possibility was that the CEA increase was due to an independent case of colon cancer, particularly given that my father has had colon cancer. Last week I had a colonoscopy to check out this out, but it came back negative. (I am probably one of the few patients in the history of colonoscopy to be disappointed to find no evidence of colon cancer which, unlike liver and bone metastases, can be readily removed.)
Together, these results probably means that one of the chemotherapy drugs I have been taking since November—most likely the systemic drug Xeloda—is no longer working. That can occur when some of the tumor cells mutate to resist the effects of the drug, much as bacteria can develop immunity to antibiotics. My oncologist assures me that this was quite expected: no one can stay on a given drug regime indefinitely, although of course longer is better.
So I’m off Xeloda and onto a new drug: Taxotere. Rather than being a pill that I take twice a day, as was the protocol for Xeloda, Taxotere is administered through an IV once a week. So it means a few more trips to the KU Med. Center (which, by the way, shortly will be renamed, following ext(p)ensive focus group research, “University of Kansas Hospital”) than previously and a little less flexibility for traveling outside the Kansas City area.
It also means that the time has come to implant a port through which to administer this chemotherapy. Those who remember the Hickman catheter I had eight years ago will be happy to hear that this new port is much more elegant. It rests totally under the skin so nothing shows and it will not require daily cleaning. That outpatient surgery will occur on September 29. Word is I’ll be a bit sore for awhile but other wise it shouldn’t be a big deal. Word is also that there will be great celebration among those in the nursing profession formerly tasked with getting large needles threaded into my small and increasingly skittish veins.
The other bit of recent excitement came with a return of upper gastrointestinal pain, quite similar to what I experienced last April. Last Saturday night/Sunday morning it got sufficiently bad that I made a trip to the emergency room at Lawrence Memorial Hospital at 3 a.m., where I was delighted to receive several injections of morphine over a three and a half hour period. (I was less thrilled to discover that the stereotypes of what an ER is like in a college town on weekend night have no small basis in reality…) This problem flared up again later in the week and I ended up going to the KU Med. Center (a.k.a. UKH) last Thursday, where I was admitted for tests and more pain control.
Unlike last spring, this time we seem to have discovered at least one cause of the pain: ULCERS! Many, many small and medium-sized ulcers in my stomach and upper small intestine. Who wudda’ thunk it? So now we are working on finding out why I have ulcers (which were not present in April). There are several possible explanations that will likely require additional modifications in my treatment, but the most likely cause is a combination of the well-documented ulcer-producing potential of the drug Celebrex (the people in the endoscopy unit really, really dislike Celebrex…) which I had been taking to combat inflammation of my feet caused by Xeloda, and the fact that chemo drugs kill off rapidly-dividing cells, which is one of the characteristics of the cells producing the protective mucus membrane in the digestive tract
So, the last few weeks have been a bit of a roller coaster ride. Everything was going fine for a while during the summer, but then the CEA spiked, and now it isn’t entirely clear that my system can tolerate the Taxotere regime. We’re off Plan A, and maybe Plan B as well, although my oncologist assures me there are plenty more plans beyond B. Stay tuned…
In the midst of all this cancer nonsense, life goes on. I’m doing yoga again (fun!) and copy-editing page proofs of the second edition of Understanding the Contemporary Middle East (less fun, but exciting to know the book will be in print soon). Phil and I are both on sabbatical this year so we aren’t teaching. We are taking advantage of this time flexibility by heading up to Minnesota next Friday to an isolated cabin (no phone and 40 miles from the nearest gas station) on the edge of the Boundary Waters. Hiking, canoeing, kayaking, and just hanging out will the order of the week. I can’t say I am looking forward to the 15-hour car drive but other than this I can’t wait!
I hope all is going well with you this fall. Let us know what is happening in your life.
Subject: Quick health news from Misty, 29 Sept 2003
Surgery this morning went fine and I am now the proud owner of a port-a-cath in my right upper chest to go along with the hypatic pump I had implanted last October. I am gradually becoming a CyBorg, setting off airport security machines ten yards away! I’m EXTREMELY sore right now but assume that will fade as time goes on.
Trip to Minnesota and the Boundary Waters was great. Beautiful leaves. Very little canoeing due to high winds, cold, and rain, but several good hikes, a visit to a wolf museum, and wonderful hours spent in front of the fireplace in our small cabin reading, talking, listening to music … Very isolated and wonderful.
First news report we heard on NPR after leaving the wilderness told of the death of Columbia University professor Edward Said. What a huge loss! I keep remembering a (very) late evening Phil and I spent with Edward a couple of years ago when he spoke at KU—drinking wine (me) and whiskey (Phil and Edward) while telling stories about mutual friends, about Palestine, about our different lives and the places those lives overlapped, and most of all discussing politics, politics, politics… (Of course, had we been comparative lit professors or musicians Edward would have been equally adept pursuing those topics and many others.) I’m told that at his funeral in NYC a number of people commented on the passing of Eqbal Ahmed four years ago, Ibrahim Abu-Lughod a little more than two years ago, and now Edward as reflecting a real generational transition and the loss of a certain type of progressive public intellectual. As one friend wrote to me: “It leaves a huge vacuum (let’s help to fill it) …” That’s the challenge for us all, I think; to continue to speak truth—as best we understand it—directly and clearly whenever and however we can do so. I take inspiration from the way many of you do this regularly and urge others to take courage in both hands and speak out against injustice wherever you see it.
Finally, several people have mentioned that my messages end up in their email trash as SPAM, probably because I put everyone’s email address as bcc (to protect people’s privacy and to avoid you having to scroll down through more than a hundred names…) If this is a problem for you, let me know—I am going to create a separate file for those people and will send the messages out individually. (Hummm .. how will I know you have received this message? Those for whom this is a problem may not even see it. Well, let’s try it anyway.) If you have 10 seconds, you might just shoot back an email note that says either “I get your messages without difficulties” or “Your messages get labeled SPAM.” If we have been in recent email contact already—as many of you have been—no need to reply unless there is a problem. Thanks.
Subject: Health news from Misty
So, just in time to distract yourself from all of those family newsletters that we and everyone else send out with Christmas cards (“We vacationed at Disney World; Suzy made the honor roll, and little Johnny’s parole hearing is coming soon; we’re hoping for the best…”), here’s the latest edition of my health news (or “How not to be academically productive during your sabbatical year.”)
I have received several lectures of late from friends in Lawrence who see me more regularly and who feel I have been not 100% honest with these updates, overly emphasising the positive and underplaying the negative. So if this seems a bit less upbeat, that’s why. It is also the case that the first nine months or so after we got the news about the disease recurrence the news was mostly good or neutral (notwithstanding the nasty experience with CMV), whereas since the summer there really hasn’t been much good news about which to write (thus the relative silence since I hate to be depressing…).
It’s been three months since the last report, at which point I’d just had a new port (catheter) installed in my upper chest to facilitate the chemotherapy. The catheter is still sub-cutaneous and thus involves poking, but at least my poor arm not longer has to be the recipient of the needles and this method prevents the veins from collapsing from the continual abuse and insertion of poison (aka chemotherapy). The recovery from the surgery to install the catheter was slower and more painful than I’d expected. Still, I’ve really appreciated having it ever since a friend from yoga class who has also been dealing with chemotherapy (no, cancer is not, by the way, caused by yoga…) told me about an anaesthetic cream that almost completely deadens the skin before the insertion of needles. It has made a huge difference in the amount of pain I experience.
Subsequently, things have been generally okay, neither real good nor real bad. One bit of good news is that the ulcers that were a problem earlier appear to be gone, and I got off of the pain-killers that were controlling the ulcer pain as well. We’re well into a new chemo regime—this is the third, for those keeping count —involving Taxotere and Adriamycin: three weeks on, one week off, except when my immune system gets too depressed and we have to skip a week. Adriamycin is decidedly rough stuff (and Taxotere isn’t exactly milk-and-honey): it is typically used during initial chemotherapy but can have adverse cardiac effects so I didn’t get it eight years ago because my father had had a heart attack at age 42 and it seemed too risky. But that means that the cancer cells have not been exposed to it already and meanwhile the potential heart problems have become easier to monitor.
The main side effects I’m feeling now are considerable fatigue—I’m only good for about ten to twelve hours per day, and that includes eating, showering, paying bills, getting a Christmas tree (totally gorgeous, if I do say so myself, and between 8 and 9 feet tall)—in other words, all of life, not just my work time. Also my hair definitely isn’t what it used to be, although it is still (barely) there, and my hair stylist did a great job giving me a cut that has survived a remarkable amount of thinning without looking too unusual. Adriamycin wipes out the immune system (meaning mouth sores, you catch every bug that anyone has, etc.), so I’m self-injecting neupogen (a drug that boosts the immune system) four days a week, and frequently go out wearing a mask. No question about it: I’ll be a whole lot happier when cold and flu season is over.
On the other hand, I’ve had only a couple of minor crises over the past months. One was a bladder injection that was painful but easily resolved, while the second was another infection of indeterminate nature that got eliminated with a week of intravenous vancomycin. However, I was able to do this at home over about a 2-1/2 hour period each morning, instead of watching “ER” play out in real life at Lawrence Memorial Hospital.
I also had an adverse reaction to a drug used to treat nausea that led to an unexpected 26 hour stay at the Cancer Center; I’m still dealing with that, taking a drug to counteract the effects of a drug designed to counteract the effects of a third drug…. This was all the more ironic since I’ve had almost no problems with nausea generally. The lesson here was one should be hyper-vigilant about potential side effects, so as part of that process, we got ourselves a 2654-page medical dictionary so we can decipher the secret code. Here’s a couple of good ones: “alopecia” = loss of hair; “asthenia” = loss of strength.
And so, you’all are saying, cut to the chase: how’s the tumour load going? Probably stable—no shrinking much, but not getting larger either. Most of the monitoring we’re doing involves the CEA tumour marker, which is hugely imprecise and is used only if other tumour markers don’t work (and for me, they don’t—that’s why things weren’t discovered earlier). CEA continues to wobble around, sometimes up, sometimes down, but definitely higher than last spring (when it jumped way up and we made the first chemo regime change). However, we did a major clinical staging with MRI, CT scans, and the like in October and everything looked stable. And my bone density—as in osteoporosis—is actually improving, probably due to a drug I get that is intended to strengthen bones so they don’t break and are better able to resist cancer. On the other hand, I am clearly weaker and more vulnerable than I was 14-1/2 months ago when this all began. So here’s the really honest part: On balance, I seem to be losing ground, albeit very slowly.
Not surprisingly, my mood goes up and down as well, with some days better than others. On the good side (we’ll skip the bad…) I was thrilled to see the new edition of Understanding the Contemporary Middle East come out (with a cool new cover); Phil and I got an 18-month renewal on our project monitoring events in Palestine for the Swiss government, and we even managed a couple of short trips to Florida and Indiana. I’m still able to do yoga twice a week most of the time (although I often have to skip certain asanas that might place too much stress on my spine, mostly back-bends), and despite the fatigue I’m maintaining a fairly active social life (although no longer dancing on tables).
Meanwhile, I created a new “affirmation” for myself. I’m not usually into such things, but this one just came to me one day and I wrote it down:
I am living
with chronic illness.
Every day is a success,
every friendship a joy,
every insight a gift, and
every accomplishment worth celebrating.
In this moment,
I am alive.
I figure these are pretty good words to live by, with a huge emphasis on the word LIVE. That’s what I am trying to do, every day. And I should also emphasize the important role that all of you play with your gifts of concern and friendship. I know I don’t always respond (or respond promptly) to your notes but they are all read and mean more than you can imagine.
Happy holidays and best wishes for the coming year,
It’s spring in Kansas! Well, nearly spring, anyway. I figure when the crocuses start blooming and the daffodils are pushing their way through the soil that’s close enough to count. We have even had some badly needed rain and for the first time in months we can no longer see the bottom of our pond.
For the first time in months and months, I have no new bad health news to report! The Adriamycin-Taxotere regime is not particularly easy or pleasant (yes, I’m totally bald again, I’m tired much of the time, and my horribly suppressed immune system means I get bad colds, fungal infections, and mouth sores with little provocation), but the chemotherapy does seem to be bringing down that pesky tumor marker (never as quickly as I would like, but still…). I’m not in any significant pain, either. And the most recent CT scans of my liver looked better than the ones in October, with modest reduction in the size of some of the smaller tumors and the possibility of some tumor necrosis (death) in the two mega-tumors (the big ones we really pay attention to and measure every three to four months). Unfortunately, even as advanced as medical technology has become, we can’t necessarily know whether the mega-tumors are dying/dead and for some reason are not shrinking (the liver may treat them like a cyst and encapsulate them, for instance) or if they are just resting before beginning to (try to) grow again. But they definitely are, as I report regularly, “stable”—they don’t seem to be changing much if at all. What this means is uncertain but it clearly is not negative news.
In my December update I mentioned having an adverse drug reaction to a nausea drug I had been taking. Most of the side effects of that ‘event’ are past now but even with taking more drugs to deal with the side-effects, I still have some funny things going on with my mouth: it often appears that I am pouting, for example, when I am not, and my smile can go kinda’ crooked at times. So we keep experimenting to see if this is something that is now going to be a permanent facial feature or if we can find something to make it go away. It isn’t painful, just annoying, occasionally a little uncomfortable, and mostly just weird.
Best of all, last month Phil and I took a real vacation. With continuous treatment of one type or another since October 2002, both my body and our spirits had simply had enough. So with the wonderfully cooperative assistance of the folks at KU Med Center, we rearranged my treatment schedule, put me on additional medicines to boost my immune system, upgraded our airline tickets to first class using frequent flier miles (we could actually sleep on the plane!), put a medical mask on me to minimize germ exposure (hey, a billion people in Asia were wearing them during the SARS epidemic), and took off for a week and a half in Maui (Hawai’i). It was truly wonderful. The weather was great, which is not always the case this time of year, and what rain did occur didn’t interfere with our plans. We stayed in several different cottages and B&B’s around the island, including one run by a woman who received her MA in communication studies at KU! The first half of the trip we took things pretty slowly (I was recovering from one of those bad colds I can get so easily) but did some whale watching, beach walking, snorkeling, visited the Ocean Center, went to a lecture on whales, etc. We also both slept a LOT and celebrated a belated 20th wedding anniversary at a wonderful beach-side restaurant we had heard about but never visited before.
As I got stronger, recovering from the cold and from the break from chemo, our activity level increased, so that by the end of the trip we were able to take a moderately difficult, five mile hike on the lower slopes of the Haleakala volcano through a bamboo forest to a wonderful waterfall. It was a hike we had done five years ago and really wanted to repeat—there is simply nothing like the sound of forty and fifty foot high bamboo stems clicking in the wind, with green leaves only at the very tops of the trees. It is quite magical. We each also took an hour-long trip on a motorized hang glider (pilot in front, one passenger behind)—at about 4,000 feet the guy turns off the motor and you just glide back to earth. Another amazing experience. And we were able to visit both the personal studio and the new gallery of an artist we have been following for quite while now: Joelle Chicheportiche-Perz, who born and trained in Paris but who has been living in Hawaii for the past 20 or so years. Fortunately for the beauty of our home (if not our budget) we were again seduced by the transfixing quality of her work and ended up purchasing a limited edition etching of a waterfall and an original of a water lily pond in the moonlight that was carved into wood and then painted. We are going to hang that one in our bedroom across from the first piece we purchased of Joelle’s five years ago, a small water color of a lily pond during the day. Our final visit was to Maui’s only winery, where we sampled local wines that didn’t seem any better than those produced by my brother- and sister-in-law’s winery in Brown County, Indiana—in fact, I like most of Dave (Phil’s brother) and Cinny’s better—but, for some strange reason, were priced significantly higher.
Feeling a bit more daring now about carefully arranged travel, we will be attending the International Studies Association conference in Montreal later this month (where we hope to see many of you—we are staying at the Sheraton and due to my on-going commitments to ISA will be there the whole darn week) and in April hope to attend the wedding of some special friends who moved to Santa Monica a year and a half ago. (Of course, the location of the wedding had nothing to do with our decision…)
Hope you are doing well.