Cancer Counterinsurgency

Certified Cancer-free: Celebrating Amy's 5th Anniversary

Amy Amy had her final post-treatment check-up at Cascade Cancer Center yesterday, and I am happy to report that she has been discharged as a patient there, 5 days shy of 5 years since she was initially diagnosed with cancer. Although she continues to experience some side effects from the treatment, according to her doctors, Dr. Matthew Lonergan (at Cascade) and Dr. Michael Hunter (Evergreen Radiology Oncology), she is now officially cancer-free.

We feel very fortunate to have been in the excellent care of Dr. Lonergan and Dr. Hunter and the staffs at the Cascade Cancer Center and the Evergreen Radiation Oncology group, who have provided exemplary personal and professional service throughout this period. We highly recommend them as treatment providers, and I hope they won't take this personally, but I hope that we never see them again for any professional reasons.

This is the 19th - and, I hope, final - post I've written about her / our experience with the anal cancer diagnosis, treatment and recovery. I've been surprised at how much attention these posts, as well as my posts on my own experience with platelet rich plasma (PRP) elbow treatment, have received. In addition to the relatively high volume of blog comments and page views these posts receive (compared with other posts), I would estimate 90% of blog-related email I receive is based on these two categories. It sometimes seems that the more open, vulnerable and personal I am in my posts - about my experience, or in the case of Amy's cancer, the experience of a loved one - the deeper they resonate with others. However, I suspect a more significant factor is the large proportion of Internet users - 80% of online American adults (in 2006) - who search for health information online.

On a more vulnerable note, I'm chagrined to read my last post in this thread, on the 3-year anniversary, where I acknowledged my awareness and appreciation deficit with respect to her health ... a deficit that has not improved much in the past two years. I also expressed an "intention to celebrate milestones to greater effect (and affect[ion])" ... and yet when she came home last night, we had to turn our attention to preparing for a garage sale we're having today and tomorrow, getting our son to a lacrosse game and other activities of daily living. We will do something special to celebrate this milestone soon ... beyond my writing this short blog post ... which I suppose, for now, represents yet another instance of preaching what I want to practice.

I do want to end on a high note, though, as Amy's cancer was in many ways the most significant challenge we have faced together. We certainly have some challenges now, and I'm sure we'll encounter many more further down the road, but for this moment, I want to simply celebrate her success in rising to meet - and overcome - this challenge.

Three Years of Cancer-free Living

Amy had her 3-year checkup this week with Dr. Lonergan at the Cascade Cancer Center. We were delighted to learn that her CT scan showed no sign of the anal cancer she was diagnosed with and treated for in 2005! The overall outcome of the examination was as good as could possibly be expected, and he recommended that she can forego CT scans for future checkups, unless there is any other sign of recurrence. I've never had a CT scan myself, but from what Amy has told me, it is not a pleasant experience (requiring fasting beforehand, and the drinking of a "contrast" solution to help the scanner detect certain internal features more effectively), so this represents a double dose of good news.

When she told me of the news on the phone yesterday, we had just finished discussing a petty issue about which I had been irritated (essentially, a manifestation of my anal retentiveness ... this time, about protecting the floor mats on our new 2008 Honda Civic Hybrid). The sharp contrast between the relative importance of the two phone conversation topics helped me recognize [from Latin recognoscere, to acknowledge or know again] how easily my priorities get out of whack.

Another symptom of how much I've been taking Amy's health for granted is the absence of updates on her previous checkups on this blog (at least since my report on the "all clear" cancer checkup in January 2006, 3 months after the completion of her radiation and chemotherapy treatment). During the period between her initial diagnosis - in May 2005 - and that checkup, I'd been closely engaged in most dimensions of her battle against anal cancer (which I dubbed the "cancer counterinsurgency" in my blog posts ... which, during that period, were numerous and voluminous). She had other annual checkups in 2006 and 2007 - that also showed no signs of recurrence - that I neglected to acknowledge here on this blog ... which probably reflects neglect in other dimensions as well.

One of the many gifts of awareness that Amy has given me over our nearly 20 years of marriage (we celebrate our 20th anniversary on Wednesday) is that talk is cheap ... and by derivation, I suppose this applies to writing as well. So I won't say - or write - much more [now], except to acknowledge my regret for my neglect, and express my intention to celebrate milestones to greater effect (and affect[ion]) ... and my hope that the future will not offer more opportunities to blog about the topic of cancer counterinsurgency.

Cancer be Gone: All Quiet on the Southern Front

Amy had a biopsy on Wednesday to search for traces of the anal cancer that was detected last May and treated last fall.  Much to our delight -- and more to our relief than we expected -- the results were negative, i.e., there was no evidence of carcinoma in any of the samples taken.   There is still some chance (5-10%) that the cancer is alive and well -- there will be more followup tests, but fewer and farther between -- and, of course, there is always the chance that a new type of cancer will be detected at some point (a risk we all increasingly face), but I choose to embrace uncautious optimism, celebrate life and enjoy the moment(s)!

I'm practicing using more graphics, and less words, to express myself, so with the help of Mutual Magick, I'll simply say

grinhoppy hopepose woohoo

Clean Bills of Health

Thanks to the gentle prodding by my cousin, Tricia, I realize I've been remiss in posting updates on Amy's health condition.  This is actually a good sign ("no news is good news") -- I was posting most frequently when her condition was worse, and have been tapering off as her health continues to improve.

We have had four doctor's visits in the past week or so, and all have been positive (er, that is, they have had only negative results to any tests for the continued presence of her anal cancer -- although none of the tests have been very extensive or conclusive).  We met with a naturopathic physician a week ago Friday, who is optimistic that the cancer is in remission, but who plans more extensive tests to chart out a holistic treatment plan to help boost Amy's energy level, immune system ... and life perspective.  She also predicted that Amy's menopausal symptoms (e.g., hot flashes) will diminish witin the next month, and encouraged Amy to think more deeply about what she wants to do with her life [now].

We met with Amy's chemical and radiation oncologists on Tuesday, who are also very optimistic about the cancer being in remission.  The development of some breast lumps over the preceding weekend had us all a bit concerned, but a mammogram and sonogram on Wednesday revealed that there was nothing to worry about there.  She also met with her colorectal surgeon yesterday, who confirmed that the fistula was healed, the tissue surrounding the surgery site(s) was looking and feeling very good, and she can have the "port-a-cath" removed.

She will have a biopsy in January, which will test whether there are other sites of carcinoma in the vicinity of the original site of detection (and resection), and my understanding is that if none is found, the probability of remission will be reset to 95% (it's currently somewhere between 90-95%).  If no sign of cancer is found for the following two years, it goes up to 98%; and if none is found in 5 years, the probability rises to nearly 100%.  If anyone wants to know more details, there is a flowchart on page 6 of the Anal Carcinoma treatment guidelines published by the National Comprehensive Cancer Network that summarizes the tests, possible results and recommended responses that we will prepare for during the next several years.

Some symptoms from the treatment continue to linger, though most at diminished levels; during one of the oncology followup visits last week, Amy reported her general energy level was at about 50% of "normal" (which is "normal" for this stage, post-treatment).  She continues to experiment with departures from the restricted fiber diet, and still looks forward to enjoying fresh fruit again.  As I've noted before, I am deliberately avoiding the setting of any expectations, and will continue to enjoy the signs of improvement whenever, and for however long, they appear, and accept the periodic setbacks when they appear.

I will probably continue the trend of posting less frequently [about Amy's condition], unless unusual situations arise.  We have another naturopathic physician appointment sheduled for early December, so I may post an update then.  Meanwhile, we remain grateful for all the expressions of care and concern that people have shared with us!

Further Along the Road to Recovery

Amy has been showing continuing signs of improvement.  Yesterday, she felt up to getting out of the house for a few hours to watch both Meg's and Evan's soccer games (and both of them scored goals at their respective games (!)), and do a little pumpkin shopping at a nearby farm.  She has been eating more regularly, taking a few tentative excursions from her restricted fiber diet, resuming her daily routine of having decaffeinated coffee in the morning, and even enjoying an occasional sip of wine.  Her weight is the lowest in the 25+ years I've known her (117 pounds), and she is looking forward to putting some of that weight back on.  The pain and some of the gastrointestinal ailments that she has been experiencing have diminished -- though they resurface from time to time -- and fatigue is an ongoing challenge.  One of her biggest challenges, at this point, is coping with huge body temperature swings, alternating between feeling chilled (due to her lower body mass) and experiencing hot flashes ... but we prefer these challenges to some of the others we have faced recently.

We continue to enjoy an embarrassment of riches, in the form of support from our network of friends and family.  Evan was able to have a small birthday celebration last weekend thanks to the generosity of one of his/our friend's family (I earlier noted how Meg would not have had much of a celebration of her birthday if not for the intervention of other friends).  Also, some of the members of Amy's bunco group have taken it upon themselves to keep us well nourished, with a steady stream of meals that has been a welcome respite from the rather narrow repertoire of meals that I have been cycling through over the past several months (and freed up some of my time to focus on other activities).  Amy and I both share a disinclination to ask for help, and a measure of discomfort when receiving assistance, so it has been a growthful experience to accept these acts of kindness with gratitude and grace ... and release the sense of non-deservedness ("you shouldn't have...").

Speaking of grace, the title of this post was inspired by the book, Further Along the Road Less Traveled: The Unending Journey Towards Spiritual Growth, by M. Scott Peck, the sequel to one of the most personally influential books I've ever read, The Road Less Traveled: A New Psychology of Love, Traditional Values and Spiritual Growth.  The inspiration stems from his opening sentence in the chapter on discipline in The Road Less Traveled: "Life is difficult".  The book continues on to talk about the importance of discipline in meeting life's difficulties (I would call them "challenges"), the varieties of love (including its highest form, which is simply the desire to promote the spiritual growth of one's beloved), proposes that we've all got religion (which is simply one's world view, regardless of whether or how it correlates with a so-called "established" religion), and a notion of grace that emphasizes growing toward godhood (that I now recognize as aligning with the concept of namaste).  Scott Peck died recently, and I heard a great interview on NPR in which Megory Anderson credited him with being a pioneer in the are of spiritual growth, while noting that other authors have since expanded beyond Peck's work to extend our understanding of love, discipline, religion and grace.  I had wanted to note his death -- and his influence on my perspective -- at that time ... but, well, I had other challenges that life presented me that assumed a higher priority, and so I applied some discipline to focus on meeting those challenges.

Signs of Improvement

While it is sometimes difficult to discern improvement on a day-to-day basis, Amy is definitely doing better this week than last.  She has been spending more time out of bed than in bed during the day, is joining us more regularly for meals, is taking phone calls again and is gradually getting more involved in some of the many aspects of our homelife that she used to take care of entirely on her own (he admits, rather sheepishly).  There have been no new blood tests or other quantifiable measures of Amy's health condition since last Monday, so we content ourselves with these more subjective signs of improvement.

We enjoyed a 5-day visit from my mother and stepfather (they just departed today), and I was grateful to temporarily turn over responsibilities for meal planning and cooking, as well as other household and even yard tasks.  My cousin, Cindy, came over for dinner on Sunday -- our first dinner guest outside the immediate family in  months -- and she even brought dinner for yet another night (probably several nights).  Despite -- or perhaps due to -- our hardships, we recognize and gratefully acknowledge that we are very fortunate in many respects.

Delicious Ambiguity

A scheduling mistake at the hospital today resulted in an extra long wait before seeing the phlebotomist for a CBC test, but there was, as so often happens, a silver lining: Amy and I used the time to stroll through the courtyard and see the Red Doors created by various local artists to support Gilda's Club Seattle, an organization inspired by Gilda Radner and dedicated to providing "a free program where men, women and children living with cancer, along with their family and friends, build emotional support as a supplement to medical care."  The doors are being shown in various places throughout the local area, and will be auctioned off on October 20, with the proceeds being used to help fund the program.

Many of the doors were captivating, each in different ways.  My two favorites were Gilda Cubist (by Freeda Lapos Babson, a [human] artist -- and breast cancer survivor -- from Edmonds) and Pachyderm's Pride (by Watoto, Bamboo, Chai and Hansa, four elephant artists from the Woodland Park Zoo), shown below.  The former had all kinds of inspirational scrabble-like words embedded in various places, and a caption across the middle and bottom crosspieces reading "Treat everyone well" and "We are all one family" ... resonating with my own increasing connection to (and through) compassion and growing awareness that, on a certain level, we are all survivors.  The second evoked powerful imagery of elephants using their trunks to create art.

Cubistgilda   Pachydermartists

The poster introducing the Red Door Campaign began with a quote from Gilda Radner that prompted the title for this post:

Some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity.

This sentiment reflects our own experience with cancer, though I'm not sure that either Amy or I have reached a stage where we might use the term "delicious" to describe either of our feelings about the heightened awareness of ambiguity we've come to know over the past several months.

As for the test results, Amy's red blood cell counts are slightly higher (hermatocrit level is up to 32%), but her white blood cell counts are a bit lower than last Wednesday (neutrophils down to 1.42 and lymphocytes down to 0.32), so we will continue taking precautions against potential infections.  She has been eating more regularly, having fewer bouts of diarrhea, and the pain from the radiation has subsided a bit.  However, the fatigue persists ... and we were told today that it is likely to persist for several more weeks.  Meanwhile, we will do our best to make the most of our moments.

A Boost

Amy was feeling extremely weak yesterday, one might almost say anemic.  We went into the hospital for her bloodwork armed with plenty of reading and listening material, expecting that she would need a blood transfusion.  Her hermatocrit count had actually gone up, from 26% to 28%, since she'd been in the hospital, and so a transfusion was deemed unnecessary.  We were, somewhat surprisingly, a little disappointed, as we'd hoped that low red blood cell counts were responsible for her weakness and fatigue, and that fresh blood from a transfusion, even with its inherent risks, would help her rebound.

Her white blood cell counts were still low, but also holding fairly steady (1.5 thousand per microliter, where they were on Monday), so she was given another G-CSF injection to boost those, and an injection of Aranesp (darbepoetin alfa) to boost the red blood cell counts.  To help with the fatigue, her chemical oncologist gave her some coritcosteroids -- two dexamethasone tablets, one for yesterday and one for today -- to get her through what we hope will be the worst period of weakness and fatigue.

The first tablet seemed to have induced a positive effect, as by evening, she felt well enough to join us at the dinner table -- for the first time in a several weeks -- to enjoy a meal brought by one of our neighborhood friends ... a nice way to celebrate her birthday.  She also enjoyed the many cards and gifts she received from family and friends (in fact, she received so many that I think our daughter might have been a little jealous).

We've been through too many ups and downs to feel comfortable making any predictions, but we remain optimistic that the worst is -- or will soon be -- over.

Home Again

Amy was discharged from the hospital today, and is resting relatively comfortably in her own bed.  Last night was particularly trying for her, with little or no sleep, but her blood counts are holding steady, her fever has not returned, and her doctor was willing to let her come home.  Before leaving, she went to the radiation oncology section for her final treatment, so she has now officially "graduated", and I can finally say with confidence that major combat operations have ended.  We are all relieved to reach the end of this chapter.

While in the hospital, I found it amusing that Amy was technically referred to as a "patient", as that is not a term I would use to describe her approach to hospitalization.  I imagine some hospitalized people may indeed be patient, and delegate care management to the professionals.  Amy took a very active role in her care, despite her illness and weakness, staying on top of everything (and everyone) to ensure that she received the tests, treatments and results in a timely fashion.  Most of the caregivers at the hospital were very competent, compassionate and conscientious ... and adapted well to what I suspect was an unusually high level of, er, engagement by a person under their care.

We found out tonight that her c-dif test was negative, and so she has started Immodium again, and we are hoping the diarrhea abates soon.  She goes in for another CBC test on Wednesday, and we're hoping that the counts are all [still] within acceptable ranges.  Meanwhile, her amateur home health nurse is hoping to rise to the challenge of providing an adequate level of care.

A Ray of Sunshine

Just as I was leaving Amy's room tonight, a ray of sunshine broke through the mostly cloudy and rainy skies we've been having for the past several days, lighting up the nearby hillside.  There was very little sunshine inside at the time, as Amy's ordeal drags on for yet another day, but she called us here at home a little while ago, and was sounding better than I'd heard her for many days, and perhaps even weeks, so I am feeling a bit less stressed [again].

Her neutrophil count appears relatively stable at 1500 (just above the neutropenic threshold), and her platelet counts are holding steady at a tolerable level (er, I forget the number).  The foremost concern, on the blood composition level, is her hermatocrit count, which is hovering around 26%; if it dips much lower, she may need to undergo a blood transfusion.

Outside of the bloodstream, Amy's fever has stabilized and her abdominal cramps have subsided.  She still has pain in the area of the radiation burns, compounded by the diarrhea, which remains the chief complaint (even if it's not, technically, the most threatening sympton) at this point.  Unfortunately, we have to wait another 20 hours before the results of the c-dif test are conclusive; until which time, she cannot take anti-diarrheal medications, as they would have a negative impact if she does have a c-difficile bacterial infection.  Meanwhile, she has started a prophylactic course of Flagyl.

It's still too early to tell when she may be able to return from the hospital.  Her birthday is Wednesday, and it would be a welcome "present" if she were well enough to be discharged by then.  However, one thing we have learned through this experience is the benefit in taking one day (sometimes one hour) at a time, and so we are trying to stay prediction- and expectation-free.