Uncertainty Expanded

On Monday, I renewed my relationship with Harmony Hill, a lovely retreat center on Hood Canal, looking across the canal to the stunning Olympic mountains. I used the retreat center for the first time last June for the leadership program I coordinate. Cozy meeting and sleeping rooms in a great setting along with wonderful food and a reasonable price made it a very good find for the program. Harmony Hill’s primary function, however, is as a cancer retreat center. Little did I know last June that I would be back within a year, using it for its primary purpose.

Monday’s one-day retreat was on “Thriving in Uncertainty.” Of course we all live with uncertainty, you say—but with cancer, uncertainty is in your face a lot more than normal. I found the greatest learning came from listening to the experiences of the other participants. And a remarkable group of women they were—about 20 of them.

The most overwhelming feeling I experienced was that of being a freshman among seniors. With a two-month old diagnosis, I was so new to cancer that they were surprised I had already found a workshop like this. I think the least any of them had been in treatment was a year, and most of them were veterans of several years, and often several recurrences of cancer. Several had gone through multiple surgeries, including some botched ones. Several were single mothers struggling with teenagers who didn’t understand their lack of energy and focus. One was dealing with a diagnosis that she was terminal, with nothing that could be done for her (and she was one of the single mothers with a teenager).

With all that, you’d think it was a gloomy group. It was anything but. These were upbeat women, glad that they were past whatever they were past, girding themselves up for the next steps, delighted with hair that was growing back, appetites and energy that were returning to normal, remissions that had lasted for varying periods of time. There were little side discussions in the bathroom on whether their hair would come back the same color, texture and “curliness or straightness” as before, and sharing of various medical and non-medical alternatives that people were using. There was also lots of laughter.

I learned a lot and my underlying images of cancer treatment were definitely shaken up. I told the group in closing that they’d definitely succeeded in expanding my uncertainty. I lost my image of a quick trip through surgery, chemo, radiation and then moving beyond it to return to my life as it was before. People talked about cancer being increasingly treated as a chronic condition rather than a disease to be cured. Of course, I told myself later, the people who deemed themselves “cured” probably weren’t in that workshop. And I might be lucky enough to have that experience. But I also might not. Seeing a broader picture opened up a lot of things for me to think about.

At the same time, the workshop showed me the power of grit, determination and the will to live. Thank you to Harmony Hill, and to the women in my workshop.

Rowing again!

I couldn’t resist. The water has been absolutely flat the last three days, and the weather warm. I’ve watched it each day wishing I could be out there rowing. Today I decided to join my rowing buddies, who were kind enough to carry the boat for me, so I kept to my “nothing heavier than 20#’s rule.” I was able to go out in a double with my friend Karen, and we actually rowed our usual course. Along the way we did a few “pyramids” of somewhat more aggressive stroking—actually since she was stroking, I told her to set the pace and I’d just fall in behind her with as much effort as I thought felt okay. Got back to the boathouse safely, and I don’t seem to have hurt myself. Major triumph! The picture I've included is actually from our rowing camp at Parker Island in Canada, but its a double and my partner is the same person I rowed with today.

Otherwise, I’m regrouping. On Friday I connected with my GP at Group Health (GHC), who set up a referral to a GHC oncologist, with whom I have an appointment on May 7. She’s also agreed to initiate an outside referral for me to talk again with the UW oncologist I saw before my surgery. His long years of experience plus being on the forefront of national research should be a significant help in thinking through treatment options. I’ll also go see the oncologist who was part of the Tumor Review Board, to get more detail on his thinking. The contest is to try to see the “2nd opinion” people before I meet with the Group Health oncologist.

Phil and I also both had an additional consultation with the retired oncologist in my rowing group—and that was very helpful. He took the time to interpret a bit more of what was on the pathology report and also explain some of the options the oncologists are likely to consider. He also indicated what’s likely driving the recommendations from the Tumor Review board—the fact that the tumor is high grade, and undifferentiated, all of which translates into aggressive and unpredictable. Add to that the somewhat narrow margin between the tumor and surrounding tissue, and that’s likely why they are suggesting getting chemotherapy to increase the odds that I won’t have a recurrence.

Phil and his buddy Shack took off this morning for their annual camping trip to visit Phil’s brother in Utah. They’ll be gone about 2 ½ weeks. They’re headed down to the Washington coast tonight—and it looks like they may be motel camping because our beautiful weather is deteriorating a bit. Going to be a bit lonesome in the evenings, but I think I can manage—we’ll talk every day, so if I need his support, I can get it. I certainly have plenty to keep me busy during the day.

Here’s to that DaVinci robot (and the surgeon who drove it), which helped me go rowing just 3 weeks after surgery!

The Battleground Emerges

Today’s conference with my surgeon produced both good news, and then disturbing news which then led to the outline of a battle that I hadn’t quite predicted.

First, the very good news. The cancer appears to have been contained within the uterus. There was no evidence that it had spread to any of the surrounding tissues in the abdomen, it had not gotten into the Fallopian tubes or ovaries, and it was not present in any of the lymph nodes that were removed. Because of that, it was classified as Stage I-C.

Now some of the rest. The type of cancer (undifferentiated uterine sarcoma) is relatively rare—though they did not define exactly what type it is. What it isn’t is one called leiomyosarcoma (that’s for those among you who might recognize what that is). But what it is, is a cancer that can spread aggressively by the lymph or blood system, and if by chance some of it is left behind, would pop up in another part of my body.

There were two additional concerns. The first is that my uterus was apparently only about 6mm thick—about ¼ to 1/3 the usual thickness. The cancer had invaded about 4mm out of that, so 2/3 of the way through. That left only 2mm of uninvolved tissue between the uterus and its surroundings—apparently the minimum that would be seen as reasonably safe. The second concern is that although the surgeon took the normal size sections from the lymph nodes in my abdomen, only 4 nodes turned up for testing. And there were no nodes that could be tested in the aortic samples she took. So that verification is less than certain.

These uncertainties are the reason the Tumor Board recommended followup treatment—most certainly with chemotherapy, to minimize the potential for the cancer to spread, and possibly followed with targeted radiation, to take care of anything that might have been left behind.

And now the battleground. It may be likely that Group Health will be more conservative in what they are willing to support than this group of physicians. At least that's been their experience with people in my kind of circumstances. So the battle is how to get the treatment that they believe I should have, to give me an added margin of safety for nonreoccurance.

And that’s where my focus will be in the next couple of weeks. I’ll be starting on it in the morning. Meantime, I celebrated my overall good fortune by having my first Manhattan in two months!

Bummer Round 1

Just had a call from a physician’s assistant at Virginia Mason, giving me a heads up on what my surgeon will talk over with me on Thursday. My results were reviewed this morning by the Tumor Board, with my surgeon and another oncologist from her office there, along with chemo and radiation physicians (and probably others). The cancer is confirmed as a high-grade (read aggressive) undifferentiated sarcoma. The good news is that the lymph nodes were all clear. I’ll have to learn more about what “undifferentiated” means, but presume it means that it was spread around rather than concentrated in a specific, well-defined tumor.

The recommendation is going to be that I undergo both chemotherapy and radiation. Wasn’t really expecting that—I thought it might be one or the other. So now my treatment window has just expanded by quite a bit. They also want to get a CT scan of my chest to provide baseline data, should the cancer decide to move.

I will get more specifics on Thursday morning—on the results and the treatment. That tango lesson is going to provide really good distraction tonight! (Last lesson—I’ll have to find something else to distract me over the next couple months).

Another week of waiting

This is the week where I find out what my life is going to be like for the next few months. Pathology reports are supposed to reviewed by a Tumor Board at Virginia Mason tomorrow. Thursday I meet with my surgeon to go over the results and hear the recommendations. I’m busy enough that the next few days will move by quickly, but I’m also wanting to get on with the next steps. I think. I’m actually in a sort of nice phase right now, feeling more like myself each day. The idea of having to head back into something that is going to make me feel worse isn’t exactly appealing, I have to say. I have to encourage myself to just put my head down and slog into the wind!

Meantime I really am making great progress with my physical well being. Managed to get through yoga classes last Thursday morning and also Sunday morning. Like my experience at the tango class, the activity that got to me was twists, so I took it easy on those, as well as some tummy crunches in the Sunday class. Interestingly, being inverted, with my head lower than the rest of my body (as in a shoulder stand) feels really great! I also put in 4 hours as part of the general rowing club cleanup crew last Saturday morning, avoiding lifting, but otherwise working in insanely cold 35-degree weather to contribute to the general cleanup of boats and boathouse at Pocock Center. I follwed up with a nice long nap that afternoon.

I am pretty much back up to my normal speed of walking. Have had to skip a couple of walks due to other things on my schedule, but I should be back to the full routine next time I walk. Some of my friends have remarked that my step is back to normal speed and I am standing fully straight. I was certainly aware of a tendency not to stand straight when I first came home, but hadn’t realized that it showed that much after that.

Most days I am not napping, but I do tire myself out periodically and knock off a couple hours of sleep (today, for example). My challenge is to continue to find some quiet time in the middle of the day, even if I don’t nap. It’s easy to let my schedule run me around, as usual. Discipline!!

Tango, anyone?

I’m gaining stamina and flexibility daily, as well as diminishing levels of discomfort and pain. I’m almost back to my full morning walk routine—just a half-hill to go, which I’ll likely add back tomorrow.

Phil left yesterday to spend 3 days in Anacortes beginning to dismantle the cap rail on our boat, so a carpenter we’ve engaged can begin to replace some of the rotting wood that’s beneath the cap rail, on both inside and outside. So I decided last night that perhaps I’d try going to my tango class alone.

Phil and I have been taking tango classes since February, attempting to expand the few steps we managed to pick up through our lessons in Argentina. It’s been very slow work, but for me, since my diagnosis, it was one of the few spots in the week where I focused almost totally on something other than cancer. It takes so much concentration to make your feet and body do these complicated steps that my mind was fully absorbed for the better part of our 1 hour 20 minute class. Plus Phil and I screw up so often, we are frequently dissolved in laughter over our inadequacies, and that was therapeutic too. During our classes, even though most of the people in the class rotate partners, we stuck to each other, opting out of the partner exchange (along with about 4 other couples).

With Phil gone, I thought I’d join the single ladies for the night, and try both dancing with different partners, and seeing if I could stand up in low heels for an hour. The heels were no problem, but after an hour of twisting of my torso and body in different directions while we did the turns we were working on, the activity finally got to me and I called it quits. However, I’d gotten good practice and review and had a great time. I also gave my torso and innards a pretty good massage! And I decided that changing partners wasn’t such a bad deal. I focused more on my dance steps and worried less about what my partner was or wasn’t doing. Afterwards I came home and watched “Dancing with the Stars” to enjoy how pros do it!

So here’s another therapy for cancer patients—dance! Good for both mind and body.

I'm Wearing Jeans!

Might not seem a big deal to you, but today for the first time since surgery I am wearing my regular jeans! Which means that my tummy has finally shrunk enough that I can actually get into some of the clothing I normally wear, rather than having to select from the few loose pants I own. Another milestone.

Yesterday I learned what it means to “over do” it. I started by doing a solo morning walk, which since last Thursday I’ve gradually been adjusting to resemble my normal 45 minute “power” walk, which is about a mile and a half and includes flat, some moderate hill climbs, a couple of steep 1-block hills, a 1-block set of stairs, and 4-5 sets of lunges. Yesterday I included the low hills, one of the steep hills and 4 sets of lunges, and felt pretty good. Then Phil expressed disappointment that I’d already done my walking, because he was planning to go out to Greenlake, which is a lovely 3-mile walk around a lake. Well, why not, said I, not one to shy away from a challenge.

Featured above are a couple of pictures from the Greenlake walk--one of me striding out, and another of a well-hidden duck tucked into a tree trunk growing over the lake. This shows me at the beginning of the walk.

 About 1/3 of the way around, I was beginning to feel challenged, You wouldn’t think just walking would create a problem, but the bottom part of my innards isn’t quite up to speed carrying what’s above it, it seems. So we slowed down. And about half way around, we sat on a bench for a while and admired the interesting people one sees walking, roller blading and running around the lake. I managed to make my way slowly around the rest of the lake, but was definitely tuckered out the rest of the day. Took a good two-hour nap, and even then was still moving a little slowly.

So I learn, sometimes too slowly, how to pay better attention to what my body is trying to tell me.

Pills

I had somehow considered myself impervious to the idea that I would ever have to join my “older” friends in managing the pill brigade that some of them seem to ingest. Even my very healthy husband has ended up with a couple of pillboxes residing on the bathroom counter (so we don’t forget to take them, right?) and another set of vitamin and other supplements jars that move in and out of the “pill basket” next to the kitchen sink, and others that hibernate in the refrigerator.

Now I’ve suddenly joined that brigade bigtime! And what a management pain it is. Over the past month and a half, I have acquired no less than 8 different vitamin/supplement pills or concoctions that I am to take each day, most of them 3 times per day. Pain meds, when taken, are in addition. The easiest to manage are the ones with meals, as long as you are home. The hardest to manage is the herbal tea that I “assigned” myself (called Essiac), because it is to be taken on an empty stomach. That means one hour before eating or two hours after. Try to find a time in the day when THAT fits! I am currently managing to get to it first thing in the morning, and sometimes just before bed. This one is also refrigerated, so it doesn’t travel easily, if at all.

Since most of the remaining supplements have to be taken with meals, they have joined the kitchen counter basket, which is now crammed to the brim, with some spillover to the adjacent counter. Ah me, this messiness is being produced by the neatnik who put the basket there in the first place, in the hopes of keeping the myriad bottles in some kind of order, and making it reasonably easy to clean around them!

The big contest is when I’m not at home—even for a single meal. First challenge is the Chinese herbs I’m taking, a wonderfully bitter concoction for which I need hot water in order to dissolve the mix. I prefer to take these herbs before meals, because that way I can use the food that follows to get rid of the lingering bitter taste. But they’re unhandy to try to take care of when on the road (may I have a third of a glass of hot water, please?)—and that’s assuming I remembered to put a dosage in some kind of container to take with me. Then I also have to bundle up my supplement mix for that meal and try to remember both to take it with me, and to take it while eating. My score card so far is less than stellar.

I have already made the first of what promises to be several trips to the drug store and my local “container” store to try to find the appropriate vehicles to ferry all this stuff around. Regular pill boxes don’t work, because they’re intended for much smaller pills than my gargantuan vitamins. Better so far seem to be small individual containers, but I also guessed wrong on the size I needed for those. So sometime in the next week it’s back to the container store for another round. I also will have to plan differently for longer ventures of a week or a month—small plastic bags seem the most flexible so far. My local donation organizations may be a little surprised at the rejected containers that come along in the new few months. And (sigh), I guess I have to acknowledge that I have somehow, at last, become part of the older adult pill-toting brigade.

A Med-free Day!

Today’s challenge is to see if I can make it through the day without meds. This is not so much a “bravery” thing as trying to restore my basic body functions, which get messed up with the painkillers. Took just one Rx Ibuprofen (3 x the normal dose) last night on the way to bed, and then nothing more last night or today. My reward this morning was my first dump since surgery—always a significant event! Afterwards I felt MUCH better, and I’ll bet my bloated tummy went down a good two inches. I still feel a bit like I’m pregnant, and am still carrying that funny plate around inside, but overall I’m much more comfortable. I feel now without meds like I did two days ago WITH meds.

We were gifted another sunny day, so I took a nice 45-minute walk (the route I usually polish off in 30 minutes, but I’m moving faster today than yesterday!). Just got back from walking over to have an acupuncture session (about two blocks from my house), so my energy flow is now realigned. We’ll be going to dinner at friends, so I’m also looking forward to a nice dinner (and Phil is looking forward to not cooking or doing dishes).

Also got to share in daughter Shana’s delight that she has secured an apartment for next year and beyond where the rent will stay the same until she is out of vet school. Just 1 ½ miles from school, it’s a duplex that will have two vet students in it. What a nice piece of rent control, and she really likes the apartment too—a big bigger than the one she has now.

A good day all around!

Little Steps

I’m taking one day at a time, with lots of little steps, and at this point, even half a day makes a difference. Today I have far less gas in my system, so I am much more comfortable. My abdomen still hurts—a bit like carrying a heavy plate around in it—but from this morning to this evening, I can notice a difference in how easy it is to get up and down out of a chair. And I am better able to stand up straight.

I’m trying to cut back on the medications so the rest of my system can function more normally. Took one pill instead of three last night, and two today so far. I may even get through the night without any. We’ll see how I feel before bed.

I took a short walk this morning (about two blocks) and a longer walk this afternoon (about half my normal walking distance). I also did a few gentle yoga stretches this afternoon, and that felt wonderful.

This evening I wanted to try to stay up a bit longer before going to bed (have gone to bed about 9 pm the last two nights), so I am not waking up at 5 am having had 8 hours in bed already, with my back telling me it’s time to move about. So we watched an episode of Foyle’s War (a great series!) to help that happen. We’ll see how things go tonight.

Home, Sweet Home!

Imagine my ecstasy to wake up Monday evening and find out they were able to complete the surgery with the Da Vinci robot’s help! I had been hoping against hope, but also preparing myself to get worse news. So this was wonderful! After a reasonably good night at the hospital (given that they woke me up almost hourly to check my blood pressure and temperature), I was able to perform the necessary body functions on Tuesday morning that allowed me to go home. So after Phil had picked up my pain medications, and I enjoyed a reasonably tasty lunch at the hospital, we were off. It’s amazing how quickly you can be released!

The surgeon reported she had no problem with the surgery, and that “things looked pretty clean in there” (i.e. no visible evidence of further disease). The pathology reports will actually take about 10 days to come. Plus she is also away next week. And on Tuesday the 22nd, there’s a review board at the hospital where a team of oncologists and treatment specialists gathers to review cases. She wants to put my case in that review, so we’ll get a group opinion about what’s best to do. I’m all for it—the more heads the better (at least usually that’s the case). She has indicated that even if there isn’t any evidence of disease in the bits and pieces of me that were removed, they may well recommend some followup treatment because the cancer they think I have is a pretty aggressive one. They’ll want to be sure they have gotten it all.

My appointment to talk with my surgeon is on Monday the 28th—which I’m trying to get moved up to later in the week prior to that. But the 28th is the latest time I should be getting news. Right now I’m taking it easy at home—truly! I napped for a couple hours yesterday, and found myself dozing off this morning while sitting in a sunlit chair in the living room attempting to read. I plan to get out to walk a little (slowly) to enjoy the sunshine we have today, and because that will help get all those gassy things in my tummy moving along like they should be.

I know the good thoughts and prayers of all of you are what helped make that surgery work like it did. Thank you!!

Post-surgery Update

I just talked to mom on the phone, and she came through the surgery OK. Everything went as well as could be expected. The doctors said that based on the limited inspection they did during the surgery, it appears that they got all the bad stuff out, but that full analysis will have to wait until they get results from the lab.

Mom seemed pretty cheery on the phone, talking about watching a documentary on Nova later tonight and then heading to bed. She is a bit tired after the surgery but feels fairly good overall, so the robotic surgery is coming out as a big plus. She said that she should be back on the computer and blogging tomorrow.

Surgery Results

I just got a phone call from dad, saying that mom is out of surgery and doing fine. The doctors report that everything went well with the robotic surgery, so the surgery was mostly non-invasive and recovery should be rapid. She is expected to come home tomorrow.

We won't know any more about further treatments until results come back from the lab, which should be in 7-10 days. Dad says he's going to see mom at the hospital once she recovers from the anesthetic, which should be around 9pm.

Presumably mom will be able to check in and write her own update tomorrow, but if not I'll give further information on her progress.

We're off!

My chief support and I are off to the hospital. I am positively floating away on the clouds of support and good wishes I have received. Look for a posting later today on how the surgery went.

Holding Pattern

The surgery is officially scheduled for Monday at 1 pm. I am to show up at the hospital at 11:30. So now we wait.

I have filled my weekend with tasty activities that should help distract me from the more mundane thing I need to do: clean out my system so that it’s ready for Monday. I went rowing this morning—did a nice turn in the double with my friend Karen, where we gave ourselves quite a good workout. This afternoon Phil and I are going to a tango workshop being presented by the Argentinian teachers of the tango team that we have been taking classes from in Seattle. We mostly hope to get a glimpse of them dancing, but will dutifully get our bodies out on the floor to try to learn something from them too. Tomorrow evening our book group meets. I won’t be able to indulge in the food, but can sip my chicken broth as we catch up on each others’ adventures and discuss the book we read, an interesting tale set in Palestine (The Collaborator of Bethlehem, by Rees). Plus I’ll be in great company.

And of course I have a few chores to finish up. So just need to find time for that in between my attractions. I have stocked up on clear juices and broths for tomorrow—it looks like an impressively dull day for “food” intake.

I am in good spirits and still somewhat overwhelmed by all the wonderful messages of support and thoughtful words I’ve received. How privileged I am to live where I do, and have the love and support that I enjoy. I am helping several other friends through trying times where they are not enjoying that same support, so I can see what a difference that makes.

On Monday as soon as my son Guy hears from Phil about how the surgery has gone, he will post a message on the blog so everyone can get an update. Hasta la vista! until Wednesday or so, when I hopefully will be home and have the energy to post an update myself.

Titles, Distance and Power

As I have worked my way into a whole set of new relationships with my treatment team and their staffs, I’ve been musing on the types of relationships that are created, or not allowed to be created. Almost to a person, my doctors are very careful to maintain their title of “Dr.” Even if they introduce themselves using both their first and last names (using the first name at least adds a little bit of humanity to them), they still expect to be called “Dr.” However, they consistently call ME by my first name.

This seems a rather lopsided bit of intimacy they are allowing themselves. I have to wonder why they feel it necessary for them to maintain that distance (other than tradition). Is it that they need to assert their professional identity (their knowledge and expertise)? Is it so they don’t get involved with me emotionally as a fellow human being? And why does it seem perfectly okay for them to address me by my first name, when I can’t use theirs? A bit like the parent/child relationship in that respect.

It is very like the distance that higher education maintains between its professors and students. Calling your professor “Dr” or “Professor” can connote respect for the stature that person has acquired in achieving that erudite title. It also keeps the relationship less personal. That may be helpful in some instances, but I did not find it comfortable when I was teaching, so I generally asked my students to call me by my first name. Some were comfortable with that, some not.

Where I found it more important to break down that lopsided relationship was when I undertook my own doctoral work. As a mature (in my 50’s) adult and seasoned professional, I was looking for an atmosphere of support and mutual respect, not a power play. Granted, many professors are addressed by their titles and manage to be quite human and respectful in their work with students. But the title also provides opportunity to distance oneself, and also to display the “superiority” of your knowledge. One of the reasons I chose Fielding, where I did my doctoral work, is that it cultivates the relationship between faculty and students as that of two equal human beings, each with something to bring to the table, working together. Fielding faculty earn the respect of their students through both their discipline expertise and their “guiding” and interpersonal skills. I developed many warm and close relationships with the faculty and administrators I worked with at Fielding. All of them were on a mutual first-name basis.

Working with my doctors I find myself back on the more traditional playing field of distance and power. I note that all the support staff introduce themselves to me by their first names. But I have yet to meet a physician who says “call me George.” Interestingly, I find that going through cancer treatment is not dissimilar to the wrenching processes that can happen while working on your doctorate, most especially the dissertation. You have to assemble and figure out how to manage your own team of assorted personalities and sometimes opposing viewpoints. You confront major stumbling blocks, experience significant emotions and often achieve major personal growth. You learn about your support systems and how to make the best use of them. You lose sleep, have significant impacts on your time and life and are frequently exhausted trying to manage everything. You certainly learn to discipline yourself.

Even more than a dissertation, living with cancer is one of the times in your life that you would really like to work with a team of fellow human beings (including your doctors), as equals, each with something important to bring to the table—the physicians bringing their specialized knowledge and skills, and me bringing my knowledge of myself, my values and my support system. I know physicians are not infallible, and they don’t have all the answers. But together we need to sort through the options so I can come up with the best decisions.

It will be interesting to see if it is possible to forge that kind of relationship with any of the team I have assembled, or work with in the future. The only person in my “team” with whom I am on a first name basis is my Chinese medicine specialist. Everyone else is a “Dr.” I wonder if that power relationship would shift if I insisted on being addressed as “Dr. Hutchison.” Nah…it wouldn’t be me.