Cancer Counterinsurgency

Too Blessed to be Stressed

On the way to the hospital this afternoon, I passed a church whose marquis broadcast the message "Too blessed to be stressed".  While I can't say I wasn't feeling stressed when I read this message, I was feeling very blessed, and I took a mini stress vacation as I continued the drive, pondering the wisdom in this statement.

I feel extremely blessed with a network of wonderfully supportive friends.  I'd earlier noted Amy's mom's timely visit (and my mom and her husband will be visiting in a couple of weeks). Meanwhile, our friends are really stepping into the voids that are emerging as Amy is increasingly incapacitated (and I try to spend more and more time caring for her), and I am overcome with feelings of joy and gratitude at all they are doing for us.  We have received nourishment in several dimensions -- food, flowers and plants, and various [other] expressions of emotional support (including one family who will be fasting for Amy's recovery and comfort).   Our kids have been taken in by various friends at various times -- for various lengths of time -- on moments' notices, have been transported wherever / whenever they needed to go, and Meggie even got a small, surprise, bona fide [belated] birthday party today -- movie followed by a dinner at Red Robin -- thanks to the intervention of some of our friends.  Tears are welling up [again] as I write this -- we are forever grateful.

Amy is resting comfortably -- actually, she's sleeping -- next to me as I type this.  It's been another heckuva day, and Amy is wondering how much more of this she can take.  There has been some good news.  Her neutrophil counts are up to 1500, but as this is probably an artificial elevation from the G-CSF injection yesterday, they are still considering her [mildly] neutropenic.  Her temperature was normal earlier, so she didn't take any Tylenol all afternoon, though it just crept up to 100, so she took some this evening.  Her abdominal pain has dimished, possibly due in part to the switch from morphine to Dilaudid as a pain management medication.  She was also started on a TPN IV system to provide her more nutrition while on her clear liquid diet.  Unfortunately, her diarrhea is now back with a vengeance (though I'm not sure it has any causal link to the TPN), and she is feeling very, well, sick and tired.

Yesterday, we had another "hero moment" when her colorectal surgeon paid a visit.  Although the exam was painful (and painful to witness), he ruled out the [then] leading hypothesis about an abcess causing the fever, and prescribed a silver sulfadiazine salve to be applied regularly to help ease the pain from the radiation burns (and we are further fortunate to have one nurse who is from a burn unit, who is an expert at applying the salve ... and overall, the most consistently kind and conscientious of our nurses). 

The feelings of relief and renewed hope I felt when our doctors showed up today and yesterday reminded me of when I was younger, and we would visit my cousins, and my uncle, who is a doctor, went in to the hospital to see his patients every day.  At the time, I was thinking it was a manifestation of workaholism, and yet now that I can experience a doctor's visit from a different perspective, I can see why it was so important to him ... and am grateful that our doctors are likewise so dedicated to their patients ... yet another aspect of feeling blessed ... and, now that Amy is resting so peacefully, I am feeling less stressed.

Taking Advantage of Some Hospitality

Amy started running a fever this afternoon, and it was close enough to the end of regular office hours that we went to the emergency room to have her examined.  Her fever reached a level of 103.5 (F) before it started coming down (Tylenol to the rescue).  A blood test revealed that she was suffering from severe neutropenia, where the number of neutrophils (one type of white blood cell) is too low to mount an effective defense against infection, a not uncommon complication from chemotherapy.  She was admitted as an in-patient, and the ER doctor said we could expect a stay of a few days.

Everyone at the hospital was very, well, hospitable.  Amy is not one to take things lying down (at least not figuratively speaking), especially when it comes to health issues, and the nurses and doctors were all patient in explaining what they were thinking and doing, and why (and when).  That said, I will admit to feeling an emotional surge of relief, hope and gratitude when our chemical oncologist walked into the treatment room -- akin to a western movie when the marshall rides back into town (and not just because his name is Matt) -- and helped us better understand what was happening ... and why.

We were told she'd be there "a few days", but we have frequently encountered optimistic projections from the various medical practitioners we have interacted with over the past several months (perhaps oncology naturally draws optimistic people).  Meanwhile, she has a nice, single, spacious room to herself, and can enjoy some truly professional hospitality for a while.

The Darkest Hour

There are a set of songs that always provoke a visceral reaction in me, with symptoms including tingling, goosebumps, teary eyes and, on some occasions, even sobs.  One such song is Long Time Gone, by Crosby, Stills and Nash, which I just played, and which had the intended cathartic effect.

Amy has been in more pain today than I have ever witnessed (in her or anyone else).  I have been with her through two childbirths (including one exactly 14 years ago today), several multiple sclerosis exacerbations, and a variety of other challenges over the 25 years we've been together.  She is one of the toughest, most resilient, women I have ever known (and I will admit that there have been times where I have not viewed that toughness and tenacity quite so admiringly, at least not without reservation).  When she cries out in pain, I know it must be intense.

In my recent reading of Field Notes on the Compassionate Life, I came to know that the meaning of compassion is literally "to suffer with".  I have been increasingly opening up to compassion in a number of dimensions, perhaps because there is so much suffering so close to home.  And I have been feeling increasingly ill in my relative helplessness to do much to soothe Amy's suffering.  I want to achieve more equanimity, in this and all situations, doing my best while detaching from outcomes, as it doesn't do her (or anyone else) any good for me to physically suffer on account of what she is going through.  There are moments when I can take deep, long breaths, and practice acceptance of what is ... but, alas, there are far more moments where my breaths are short and I feel consumed by grief.

Amy's radiation "graduation" was scheduled for today.  Unfortunately, due to her extreme discomfort, we had to postpone, and will try again tomorrow.  Regardless of whether/when we proceed with the last radiotherapy treatment, the chemotherapy is over, and the side effects will diminish ... and so the dawn will come.

It's been a long time comin',
It's going to be a long time gone.
But you know, the darkest hour,
Is always, always just before the dawn.
And it appears to be a long,
Appears to be a long,
Appears to be a long time,
Such a long, long, long, long time before the dawn

[Update, 2005-09-29: I neglected to mention that while the cumulative radiation burn is painful, the primary pain Amy is suffering from now is severe abdominal cramping, which she compares to labor -- and the analogy can be extended, as the pain of moving her bowels is quite intense as well ... but I won't go there.  This morning, her chemical oncologist recommended she has increase her use of pain and muscle relaxant medications, and this has made life a little more bearable.]

Major Combat Operations have Ended ... Not (Week 5 update)

Last week, I thought -- and wrote -- that Amy would be done with chemotherapy and radiotherapy yesterday (Friday).  I was half right, in that the chemotherapy is over; however, her radiation oncologist wants her to undergo three more radiation sessions -- with a narrower field -- to help ensure that the anal cancer is eradicated. So, the battle continues for a bit longer ... and I hope that my allusion to a more famous pronouncement of an end to major combat operations does not portend any further coincidence with the course of that theater of operations.

As I mentioned last week, Amy received another injection of mytomycin on Monday and was outfitted with another Fluorouracil (5FU) pump.  The pump was removed yesterday.  She was feeling pretty good -- all things considered -- for the early part of the week, until the side effects started kicking in (primarily diarrhea -- yesterday was a 5 Immodium day -- and fatigue).  The last few days have been pretty rough, especially with the radiation burns increasing (and increasingly painful).  She has a hard time finding a comfortable position: sitting or laying on her back would be most comfortable, except for the growing pain in her butt.  We're not out of the woods yet.

It was nice having Amy's mom here this past week to help out in a variety of ways (with Amy, the kids, the cooking, the cleaning, etc.).  Other family and friends have been in touch recently, and Amy said that some who have read my posts on the cancer counterinsurgency have not understood that her cancer, or rather, its treatment, has a very high cure rate (95%, up from the 90% I initially reported).   So the long-term prognosis is very good ... and keeping our eyes on this prize helps us meet the short term challenges.

Reinforcements Arrive before the Final Battle (Week 4 update)

It occurs to me that we're actually at the end of week 5 since the start of Amy's cancer treatment, but given that she had a week-and-a-day hiatus from radiotherapy, this can still be considered the end of week 4 based on the number of treatments (20) ... and that way the headers on my weekly posts are more consistent.

We have some good news this week.  Amy's mother, Mary Lou, arrived from Wisconsin Thursday night and will stay until next Saturday.  We expect that the next two weeks will be the most challenging, and so we are grateful for her willingness to come out and help us through this period.

This past week, Amy's white blood cell (WBC) counts were low again (especially her neutrophils), and so she was given G-CSF injections on both Monday and Tuesday to keep her WBC levels within the range of acceptable risk for continuing radiation.  With only 5 radiotherapy treatments (one week) left, we want to avoid any further breaks.  Amy's fatigue has increased, but she has been having less gas and has had no diarrhea for nearly 3 days (!).  We anticipate that this respite will be shortlived, though, a sort of calm before the storm.

Next week, she will undergo another round of chemotherapy, in conjunction with the final week of radiotherapy, essentially a reply of her first week of treatment. [Note: I just corrected my first post in this thread of "cancer counterinsurgency", in which I incorrectly stated that she would be undergoing 5 weeks of chemotherapy; it will be a total of 5 weeks of radiotherapy and 2 weeks of chemotherapy.]  Monday she will get another injection of Mytomycin and be outfitted with another infusion pump to administer Fluorouracil (5FU) over the course of the week.  Our chemical oncologist told us on Monday that the first administration of the drugs creates the most significant "shock" to the body, so when the second round of drugs is administered, the body will adapt a little better ... and so the side effects attributable solely to chemotherapy should be somewhat milder.  However, there will still likely be significant side effects from the chemotherapy, and they will continue one to two weeks after this coming week.  And since the side effects of radiotherapy are cumulative, we're still bracing ourselves for the worst ... but at least we can see the light at the end of the tunnel ... and we have some extra help during the start of the final stretch.

The Battle is Rejoined (Week 3 update)

After an 8-day radiotherapy cease-fire, Amy's platelet (PLT) and white blood cell (WBC) counts increased above the threshold required for the resumption of daily radiation treatments this past Tuesday, so she has completed another [nearly full] week of treatment ... and we are hopeful that she can continue on with the remaining two weeks of scheduled treatment without another break.

The symptoms I've mentioned in previous posts (fatigue, diarrhea, gas, itching) persist, although the radiotherapy hiatus has given her skin time to heal a bit, so the itching has diminished and the bleeding -- which I had forgotten to mention, until Barb mentioned this side effect in a recent comment -- has subsided.  I also forgot to mention that she has been on a restricted fiber diet to minimize gas, stool quantity and diarrhea; this has been difficult because we traditionally eat high-fiber foods (she especially misses fresh fruit).  One more reason for wanting to complete treatment as soon as possible.

Among the things we learned from our meetings with doctors this week:

  • Low WBC counts in the second week following chemotherapy and low PLT counts in the third week following chemotherapy are "normal" (I think our chemical oncologist had mentioned this during our initial meeting, but I'd forgotten). 
  • The chemicals used in chemotherapy kill fast-growing cells, such as cancer cells, but also including WBC and PLT cells (which -- surprise, surprise -- reproduce in approximately two and three weeks, respectively).
  • Chemical oncologists and radiation oncologists [obviously] employ different approaches to accomplish the same result (eradication of cancer).  However, in addition to different methods, it appears they often have different perspectives on what is safe and reasonable during the course of treatment.  In particular, our chemical oncologist has a higher threshold for lower blood counts ... and is willing to help use chemistry (e.g., G-CSF injections) to help maintain those counts at the higher levels that will pass the lower threshold of risk that our radiation oncologist is willing to accept in order to continue treatment.  Better living through chemistry!
  • We were told there is a "high probability" that the treatment will trigger menopause ... the silver lining of which (for me) is the correspondingly lower probability that I will need to move forward with plans for a vasectomy.

I'll finish off this update with a link to an article entitled "Cancer: It's a Growth Industry" (an interview of Dr. Samuel Epstein by David Ross, originally appearing in Z Magazine in October 2003), in which Dr. Epstein questions the priorities and highlights the environmental, economic and political factors in our "war on cancer" ... reminding me of questionable priorities in other "wars".

A Radiotherapy Cease Fire

The week in Amy's cancer counterinsurgency started out "normally" (in sharp contrast to events unfolding in the southeast US in the wake of Hurricane Katrina), with Amy heading in for her daily dose of radiotherapy on Monday.  On Tuesday, however, her complete blood count (CBC) test revealed a platelet (PLT) count of 39 (thousand per microliter -- normal range is 140-400). Since radiotherapy compounds the effect of chemotherapy on bone marrow, her radiation oncologist suspended radiotherapy until that count increased.  Wednesday was another radiotherapy vacation day (and the first weekday she's not visited the hospital since the start of treatment).  Thursday, her PLT count had stabilized (up to 49), but her white blood cell (WBC) count was down to 1.5 (thousand per microliter -- normal range is 2.5-11.0), so she received another injection of Neupogen, and the radiotherapy cease fire continued.  On Friday, her WBC had spiked up to 13.4 (above the normal range), and her PLT count was holding steady at 49, but her doctor wanted to further postpone radiation until Tuesday (given the Labor Day holiday on Monday), when they can retest and determine with greater confidence whether the counts have stabilized.

Last week, we found out that some kind of break in the action is expected at some point in the treatment, so I guess the hiatus has simply come sooner than expected (although we were anticipating this break coming later in the treatment, and as the result of tissue damage from the radiotherapy rather than low blood counts).  We hope that her tissue is recovering sufficiently during this period that when treatment resumes it can continue through the end without a further break.  The most difficult part of this week has been the waiting ... Amy [understandably] just wants to be done with this as soon as possible.  Her body has been responding to the elevated WBC with flu-like symptoms, and she has also been experiencing headaches and dizziness ... symptoms she has coped with before as part of her longer-term -- and lower-intensity -- battle with multiple sclerosis (and the side effects of an earlier drug treatment for MS management).

Other symptoms persist from last week -- gas, diarrhea, fluctuating appetite, fatigue -- and some new symptoms are appearing or increasing -- itching and pain in the affected area, hair thinning (in all areas) -- but she is hanging tough.  She has been driving herself to the hospital for treatment every day, felt well enough to do some school supply shopping, and continues to manage the household (although with the increased delegation of tasks, the house is not nearly as clean and neat as it is when she has more energy).  We are both grateful for the ongoing assistance provided by our friends.

I've been increasingly attuned to the disaster and response(s) stemming from Hurricane Katrina,  feeling compassion and empathy for those who are facing extreme challenges in the southeastern US this week.  One important dimension in helping people (refugees) who have evacuated the impacted areas is enrolling the children of those dislocated by the destruction in [newly] local schools, not only for the obvious benefits of continuing education, but for the second-order benefit of helping families regain -- or redefine -- a sense of normalcy.  Meg and Evan both started school again this week, and I have to say that I can understand the value of -- and am grateful for -- this second order effect.

Cancer Counterinsurgency Update

Thanks to all who have expressed their concern and support as Amy progresses through her cancer treatment.  For the benefit of those who are interested in following her progress, but who may be, er, somewhat less interested in other topics I post about, I decided to add a new category: Cancer Counterinsurgency (and added a list of categories to the left-hand column of the blog -- I'll also categorize such posts under Family and Friends and Health).

As of today, the main and side effects of the chemotherapy should be at or near their peak.  On Monday, a blood test revealed her white blood cell count was very low, and even lower when it was retested on Wednesday, so she was given injections of some medication (don't know the name) once daily for the past three days, and her white blood cell counts are all within acceptable ranges again.  Given her extremely depressed immune system, we are still washing our hands frequently and thoroughly, just in case.

She has been experiencing gas, diarrhea and constipation at various times throughout the week; today she was having the worst gas pains of her life (though she thinks it was due more to a banana than anything else, and it has since dissipated).  Being a generally tough cookie, she's maintaining a good perspective throughout, and we are happy that, gas pain excepted, she has been doing so well through the treatment.

During a meeting on Monday, we found out that only one patient who has undergone this kind of treatment for anal cancer in the past 15 years (at Evergreen) has been able to continue straight through without a break of some kind, because of the harsh burns that typically develop in the pelvic region (due to the non-uniformity of skin surfaces and the extreme sensitivity of some of the tissue in that area).  So, we are now prepared for the possibility of up to a one week "break" in the treatment sometime in the next three weeks. 

We were also told that most of the side effects of the treatment should substantially subside within about four weeks following the end of treatment.  They will not be able to do a biopsy to check on the [local] effectiveness of the treatment for four more weeks after that; if the cancer is gone from that region, she has a 90% chance of it having been "cured" ... other milestones that may increase the probability of cure will occur at the 2-year and 5-year marks, assuming negative test results.  So we'll be optimistic about negativity.

Anal Cancer: A Real Pain in the Butt

I decided to use a subtitle with a bit of humor, as laughter will be increasingly important over the next few months.

On May 18, Amy had surgery to repair a rectocele, which also involved draining a fistula.  A routine biopsy revealed an unexpected and unwelcome result: carcinoma in situ, or "non-invasive" anal cancer.  We met with a radiology oncologist shortly thereafter to discuss treatment options, and since further surgery in that area carried unacceptable risks (due to proximity to the sphincter), we decided upon a 5-week course of chemotherapy with Fluorouracil (5FU) and radiation.  We scheduled a followup biopsy six weeks later, to allow time for the wounds from the initial surgery to heal. 

The followup biopsy of four sites surrounding the original excision on July 6 revealed one to be "probably invasive" and two to be "possibly invasive", raising our anxiety level and the scope of chemotherapy, which was expanded to include Mytomycin, which has greater main and side effects in treating anal cancer.  Despite the somewhat more advanced stage of the cancer, the planned treatment has a 90% cure rate, so our anxiety was/is tempered by optimism.  We already had plans for visiting and being visited by friends and family throughout late July and early August, and since we needed to wait for additional internal healing following biopsy, we decided to schedule the start of treatment for August 15 ... this past Monday.

Monday morning, we arrived at the hospital at 6:15 a.m. to prepare for the surgical implantation of a "port" in Amy's chest through which the chemotherapy drugs can be administered.  After surgery, for which she was sedated (rather than anesthetized), she was able to rest a while before heading to the chemotherapy area at 12:30 to receive her first injection of Mytomycin and to be outfitted with her 5FU infusion pump.   At 3:30, we proceeded to the radiation oncology area for her first dose of radiation.  We returned home around 4:30, by which point Amy was tired, and feeling some pain from the surgical incision, but otherwise doing remarkably well given the circumstances.

Since then, Amy has gone in every day for radiation treatment.  On Wednesday, she also received a refill for the infusion pump and had her wounds checked, and Friday she had the pump removed.  Wednesday, she also had an opportunity to meet with a nurse to discuss skin care.  As Amy is fair-skinned and burns easily, the side effects of both the chemotherapy and radiation therapy are likely to be more significant for her than they would be for a darker skinned patient.  We've also learned that the cumulative effects of the chemotherapy and radiation will be increasing over the course of treatment, may continue for several more weeks or months afterward, and it may well be a year (or more) before she returns to anything approaching "normal" ... and, indeed, that we will likely have to redefine "normal" as even under the best conditions, some changes may well be longer-lasting or even permanent.  I just hope one of those changes is complete eradication of the cancer!

We both continue to work through the stages of grief, often looping back as new information -- and subsequent thoughts and emotions -- come into play.  I say "we" liberally here: I think each of us is progressing and regressing at different rates at different times.  Amy is doing pretty well: still feeling some pain from the port implantation surgery, experiencing a little nausea, some dizziness and fatigue.  She is feeling well enough that we will go for a while to watch Evan play soccer in the Jamboree this afternoon.

With the start of Amy's treatment this week, I've scaled back on my business focus -- particularly difficult given the early stage of my new venture -- trying to make time for her, for the family and for myself and avoid the temptation to indulge the workaholic tendencies that have characterized periods of my past.  I hope to find and maintain the right balance as conditions in all of these dimensions continue to change ... and to maintain my underlying faith that somehow this will all work out for our greatest good ... and that we will rise to meet the challenges -- known and uknown -- that lie before us.