Anniversary

As you push north out of Bellingham on Guide Meridian Road in the very northwestern corner of Washington, you cross the Nooksack River and come to the small, rural township of Lynden. I’ve driven this route many times over the years heading to the inland Canadian border crossing at Aldergrove rather than taking the vastly more crowded Interstate 5 crossing to the west at Blaine. The municipal center of this bucolic haven of fewer than 14,000 residents lies a few blocks to the east, but Guide Meridian (also known more formally as Washington State Highway 539) runs through a burgeoning business district where it intersects Front Street, the western entrance to Lynden’s modest civic footprint.

The northeast and southeast corners of this intersection sport low brick ramparts with the town’s name displayed in large block letters, but the more distinguishing feature of this corner is that behind these two welcoming facades are the town’s two pioneer cemeteries — Lynden Cemetery to the south and Monumenta Cemetery to the north. Before groundkeepers planted a tightly-spaced arbor vitae fence along Lynden Cemetery’s western prospect, passing vehicles could clearly see the grave markers closest to the road.

For many years, a particular marker would catch my eye as I drove past. Standing nearly four feet high, it was an impressive upright headstone made of a light rose-colored granite, mounted on a foundation plinth of speckled gray granite. The rectangular main column was topped by a graceful curved capital with inlaid neoclassical scrollwork, all supporting a prone cylindrical capstone. Not at all dissimilar in scope or ornamentation from many nearby monuments, what was remarkable to me wasn’t its construction. What was interesting to me is what was inscribed on the crest. A single word, in all upper-case letters, large enough to be seen clearly from the road: HUSBAND. As I drove on I often wondered what feats of marital virtuosity this man had accomplished to warrant such a unique monolexical testament. Of all the roles he played throughout his life, of all the things he ever was, did, said, encountered and felt, what was it about this the one word that his benefactors chose to place it here in prominence, summing up his life in perpetuity?

I was curious to the point where I stopped one year to investigate further. Initially perplexed as there were no additional inscriptions or epitaphs on the marker, I then realized that this was actually a plot marker for a family whose surname was Husband. Although it appears to keep as reserved a parcel of land capable of holding ten or twelve graves, there are only two, each identified by separate and smaller markers slightly to the southwest: David Husband (1841 – 1934) and Rachel Husband (1832 – 1912). The larger marker is called a family stone — a gravestone that marks the entire family’s plot and not a particular individual’s grave. Much more traditional in Europe than in the United States, this practice wouldn’t be at all out of place among Lynden’s original Dutch immigrant settlers. The surname Husband is an occupational derivation (in the way that “Smith” comes from “blacksmith”, etc.) of Anglo-Saxon and Old Norse, originally meaning a peasant farmer or husbandman. While quite apart from the significance to which I had been attributing it, it is fittingly in line with Lynden’s agrarian roots.

Although I was a bit vexed and embarrassed that I had been carrying such an erroneous supposition for several years, the question of “husband” being something beyond a legal term and title still preoccupied me from time to time. In my initial years of marriage, my view of being a husband was that it was kind of a thing I now was. I didn’t really feel any different from the pre-marriage me, nor did I take any of my relationship responsibilities any more or less seriously than I had prior to being married. By virtue of a ceremony and a license, I simply been awarded this convenient label to allow society to interact with me in a particular way. This “husband as noun” worldview persisted for the first four years of my marriage, but then took an abrupt and unexpected turn. On Halloween Day in 1997, my wife Jessica was diagnosed with breast cancer.

It wasn’t just one cancer, but a particularly rare, virulent and more often than not fatal combination of two different types of cancer. Her prescribed treatment would last nearly 8 months – surgery, then chemotherapy followed by radiation therapy. For the better part of a year she endured all the medical procedures, the doctor visits, the drugs, the drugs to deal with side effects of the other drugs, and all the physical indignities and lasting consequences of this particularly malicious infirmity.

Thrust somewhat unprepared into the role of caregiver, initially I was an angry and disruptive presence in the medical proceedings. I did the best I could in supporting her and trying to create an environment in which she could tolerate her treatments and find some kind of path towards healing. One of the outcomes of this process was that I began to write down summaries of her condition to share via email (a fairly nascent technology at that time) with friends and family en masse as we didn’t have time or energy for all the individual conversations. As an attempt to lighten up the news I was sharing, I titled these missives “Jess-O-Grams”, and sent out just over a dozen during the course of her treatment. While some recipients were effusive in their gratitude, and others were silenced and overwhelmed by the discomforting level of detail and emotional impact, each edition was sent to more people than the previous one, and the final note went out to nearly a hundred people.

After treatment finished, the JOGs (“jogs”, as I had taken to calling them) were quickly forgotten as we moved on to trying to reestablish some new kind of normal life. I was actually quite surprised when someone asked me if they could share them with another friend who had just been diagnosed. Still very much in caregiver mode, I was only too happy to share, and hoped they might find something useful or comforting in them. This began to happen with some regularity, and it was affirming to know that out of this chaos I may have created something of lasting value. I heard from some people that our openness and candor was refreshing, as no one in their family ever spoke about major illnesses. I heard from others that it was a source of comfort and relief just to know that they weren’t alone in their fight. Still others said it gave them a model and a vocabulary for creating their own narratives on behalf of their loved ones undergoing similar treatments. I heard words like “hope” and “inspiration”, and I ended up on the mailing lists of essentially total strangers whose only bond to me was that they had read Jessica’s story.

While riding this wave of positive sentiments and beginning to wonder if I should perhaps start a larger work about our experiences, I received an update from one of my “fans”. After a period of remission, his wife’s cancer had returned and had metastasized to her brain. I received another note about a week later saying that she had died. I was stunned and even ashamed — who was I to continue to tell the story of my wife’s trials and ultimate survival, when clearly there were others who weren’t so fortunate? I had no words or even capacity to address the question of why some cancer patients lived and some didn’t. In her book A Return to Love, spiritualist Marianne Williamson would have us believe that our “playing small doesn’t serve the world”, but nonetheless I stopped sharing the JOGs at that point.

I read them occasionally in the years that followed, and consistently found them to be every bit as visceral as when I first composed them. They also took on a time-lapse quality, as months passed on adjacent pages. A great deal has changed since their original distribution. There have been many advances in both cancer detection and treatment, and consequently much of the medical information contained in the JOGs is now grossly outdated (and gladly so — according to the American Cancer Society, death rates from female breast cancer dropped 39% between 1989 and 2015). Social mores have also changed, and the then-contemporary jokes about the illegality of using marijuana to cope with chemotherapy now seem surprisingly antiquated – especially here in Washington where cannabis is newly legal. They contain what in retrospect seem like weak and forced attempts at humor, and many colloquial references (e.g. answering machines) seem hopelessly anachronistic. While on the surface they are anecdotes surrounding events that happened at a different house in a different town, seemingly as part of a different life, deeper down there remains a kernel of timelessness and universality. The more actual time passed, and the more Jess climbed up the percentiles of the survival projections, I slowly came to see that the reasons people found them worth reading had nothing to do with any promise of the story ending well. Rather, it simply allowed them to be present in Jess’ struggle, and perhaps to find some application or connection to their own circumstances.

The cancer immersion was a pivotal series of experiences in my life. Much was lost, including our plans to have a family. Much was also gained, in terms of insight into how a life-threatening situation can bring your priorities into sharp focus, what a remarkable treasure it is to have caring friends and family, and just what extraordinary things we are capable of as human beings. Will Rogers is reputed to have said that the problem with today’s society is that a man can live his entire life and not know if he’s a coward. While I have certainly disappointed those I care about on multiple occasions, I also know that in times of true duress I can be counted on. I don’t yet know if “husband” will be the definitive reflection of my life or not, but this crisis provided the catalyst for my evolution from husband as a thing I merely was to something I actively did — the journey from husband as noun to husband as verb.

The JOGs were an integral part of this passage. In addition to providing our extended community with updates, they also helped us keep the bewildering array of medical information being thrown at us in a semblance of order, and allowed me to contribute in a way that was both constructive and therapeutic. As I found my footing as a caregiver, I also found elements of my voice as a writer. Today, under the auspice of the 20th anniversary of my wife’s diagnosis, it seems an appropriate time to republish the JOGs so others can read and make up their own mind as to their significance without any of my projected doubts and fears. As they were essentially a blog before such a thing existed by that name, this also seems an especially suitable place for them to reside.

While science and society have changed, I suspect that the intensely personal and life-altering dynamics of individuals and couples struggling to react to a diagnosis have not, and therein lies the true merit of having captured this experience. The story is Jessica’s, and remains a testament to the courage and resilience with which she faced these challenges and her continued ability to see each day as a gift. I was merely a witness; a chronicler and supporting player. Whatever the weaknesses or failings of the storyteller, there is intrinsic value in the story. I offer them up again as a sober reflection on an important chapter in our lives and to mark a significant anniversary, but they also provide a fascinating glimpse of ourselves as we were two decades ago. Above all, they are reposted in loving tribute to one of the strongest, smartest and bravest women I know, and in combined celebration and gratitude for our present reality: twenty years later, she is still here and remains cancer-free.

Here are the original Jess-O-Grams:

JESS-O-GRAM #1 (11/3/97)

We have just received the results from Jess’ biopsy last Friday, and the breast tumor is malignant. We meet with our team of doctors tomorrow to discuss treatment strategies, but in the meantime please fire up your happy thought machines. We’ll keep you posted…

JESS-O-GRAM #2 (11/6/97)

Lots of new/revised information. Some background info: Breast tumors are classified two different ways. First, the stage indicates size and spread on a scale of I to IV, higher numbers being worse. Second, the grade indicates a measure of the speed of division and propagation of the cancerous cells on a scale of 3 to 9, again the higher numbers being worse. It’s basically position and velocity for you engineer types.

The bad(ish) news from Monday’s biopsy report is that Jess’ cancer has been labeled as Stage II based on the size of the tumor (2.4 cm diameter mass) and absence of knowledge about the involvement of the lymph nodes other areas. The worse news is that it’s a grade 9 tumor, the most virulent and aggressive grade. This explains the rapid onset of symptoms Jess experienced.

Tuesday started out miserably with our discovery that someone had broken into the Jeep and stolen the stereo Monday night. Tuesday afternoon we talked with the surgeon who did the biopsy, going over potential avenues of treatment. The initial plan was to run a battery of tests next week, followed by a three month course of standard chemotherapy (to test the effectiveness of the drugs on the tumor and to actually shrink the tumor, thereby reducing the volume of tissue that would have to be surgically removed), then a lumpectomy to remove the tumor, 2-3 weeks recovery, radiation therapy, then more chemotherapy. A long road awaits. However, neither of us was comfortable with the quality or quantity of information we were getting from this particular surgeon, and he didn’t seem to share our sense of urgency — we had already agreed that the tests were the next step, why did we have to wait a week? We’re sure he’s a great surgeon, or our GP wouldn’t had referred us to him, but we weren’t getting everything we needed or developing any sort of rapport or basis for trust.

On Wednesday, Jess was able to get a last-minute appointment with another surgeon who had been recommended to us. To have her going into major surgery without trusting the surgeon was an untenable situation. The second doctor (a woman, which adds to Jess’ comfort) spent a long time going over the mammogram films and report, going over the ultrasound films and report, going over the pathology report, detailing how and where the cancer initiated and how it got to where it is today — all of which had been skipped by the first surgeon. To ask the first doctor to explain all this seems obvious to us now, but two days ago we hadn’t a clue as to what questions we should be asking. Essentially we were still in shock from the biopsy report. Needless to say — we have switched surgeons. Jess had blood work and chest x-rays done right after the consultation yesterday, and today she is having liver and abdominal scans done. All the tests the first doctor wanted to do next week will be complete within 24 hours of consulting the second doctor. This doctor also shares our opinions about the need for rapid action in dealing with grade 9 tumors. Jess is scheduled for a lumpectomy on Friday, Nov. 14th. She will also have some lymph node tissue removed for dissection. The good news is that the position of the tumor bodes well for this type of surgery, and should (hopefully) result in minimal disruption to both the surrounding tissue and pectoral muscles. Depending on the outcome, surgery will be followed at least by both radiation and chemotherapy, so this thing is still a long way from being over.

In the meantime, we are reading, making phone calls and surfing the web to get more information, continuing to get the support network in place, and getting mentally ready for this whole process. Thanks to all for your continued support — we’ll keep you posted…

JESS-O-GRAM #3 (11/10/97)

What promises to be a big week for us has begun with some encouraging news (with the Dawgs losing to the Ducks last Saturday, we need all the encouragement we can get…):

• Blood work results came back negative – no indication that the cancer has spread to her blood.
• Bone scan results came back negative – no indication that the cancer has spread to her joints. She does, however, have some nasty shin splints from running that showed up :).
• C/T scan results came back negative – no indication that the cancer has spread to her internal organs.
• Chest x-ray “looked good” to quote her surgeon, but has been sent to Radiology for an expert opinion.

So far, so good. None of the above results will alter our plan for treatment, but at this point it appears the cancerous cells are confined to the breast tumor. The schedule as it stands:

Tuesday afternoon we meet with our oncologist to go over the schedule for post-surgery chemotherapy and radiation therapy. The only thing that will change these plans is if the tumor turns out to be estrogen receptive, in which case a drug called Tamoxifen can be administered orally instead of using standard chemotherapy. We won’t know this until after another set of tests is run on the tumor after it is removed, so chemo/radiation is “Plan A”. We will also be having a very frank discussion on the benefits and side effects of each these treatments.

Thursday morning we have a final meeting with the surgeon to sign release forms, go over the surgical details again, and lay out a plan for convalescence. Jess’ mother will be flying in Thursday night, and I have been pricing the 55 gallon drums of chicken soup at Costco.

With the test results above, we haven’t changed the surgical approach (lumpectomy). The actual operation is scheduled for 7:00 AM this Friday at Swedish Hospital. She will also have a portion of her left side lymph nodes removed for dissection, and will have a catheter installed for future blood drawing (required at least once a week during chemo/radiation) and for administering the chemo treatments. This is done to protect the arm veins from the abuse of multiple needle insertions, and our surgeon prefers to do it during the initial surgery so Jess won’t have to have a separate second operation to install it — we like the way this woman thinks.

For those of you not in Washington, the weather has just turned phenomenal — clear, sunny and 65 degrees. We take this as an auspicious omen as we get ready. Jess bought herself a new bathrobe (“gotta look good in the hospital!”) yesterday, and we’ve started looking at cool hats for the chemotherapy days ahead (although she, displaying the humor that will help get her through this, insists she will be having everybody sign her head like a cast). Another big thanks to all for your continued support. More news later…

JESS-O-GRAM #4 (11/12/97)

Just when you think you understand what’s going on, and just when you think you’ve formulated a good plan, the game changes again. Our optimism from Monday has been tempered by some clarifications requested by our surgeon on the biopsy pathology report, and by our consultation with the oncologist yesterday.

The meeting with the oncologist was our most trying session to date. From the clarified pathology report, it appears that what Jess has is actually an extremely rare combination of cancers, and data on this type of tumor is scarce. The first type, carcinoma (technically adeno-carcinoma, based on where the tumor started), is the most common form of breast cancer, and is the type of cancer usually addressed in the popular literature. Data on this type is plentiful, and deciding on treatment is almost a flowchart process depending on the size of the tumor, the number of lymph nodes involved, and whether the patient is pre or post menopausal. Success rates for treatments of this type are also fairly well known. The second type, metaplastic sarcoma (sometimes called carcinosarcoma and yes, it even sounds nasty) is a very rare form of breast cancer, and is the more aggressive of the two (most likely responsible for the grade 9 rating of Jess’ tumor). The data on this type is much sketchier, based on its infrequent occurrence.

The combination of these two is even rarer still. The oncologist said that this combination constitutes less than 1% of all reported cases of breast cancer in the US, and that there are probably fewer than 500 cases documented in the worldwide medical study database. This does not mean there have only ever been 500 cases, it means that only about 500 patients have participated in documented studies using clinical trials to determine the effectiveness of various treatments. He is continuing to do a literature search for more data.

This presents us with several problems. The needle biopsy Jess had done was quick, non-surgical, and contained sufficient tissue to determine that both types of cancer were present, but it was not sufficient to determine which, if either, is the dominant form. Because both types behave differently and are treated differently, we are caught in a very grey area as far as treatment. Because of the scarcity of historical data, there is very little statistical data to support any course of treatment. Both Jess and I as engineers like to hear numbers to back up courses of action, so this news is very mentally disabling. We spent quite a bit of time playing “good news – bad news” in the oncologist’s office. The good news is that sarcomatic tumors don’t tend to spread to the lymph nodes. The bad news is that carcinomatic tumors do. The good news is that sarcomatic tumors don’t really respond well to chemotherapy, so it might not be necessary. The bad news is that carcinomatic tumors usually require chemo. The good news is that smaller carcinomatic tumors can usually be extracted with a lumpectomy. The bad news is that patients with sarcomatic tumors tend to opt for mastectomies, usually to err on the side of caution — the more cells removed, the fewer left to rely on chemo/radiation to clean up (which is consistent with the priorities of the Seattle Breast Center with whom we are working: 1. Save the life. 2. Save the breast). The good news is that if it’s a sarcomatic tumor, we caught it fairly early. The heaviest news of all is that post-treatment relapses of sarcomatic cancer are almost always fatal (98%+ mortality rate). I am not trying to scare anybody with that statement, this is simply the brutal reality of what we are up against. The paradox is maddening — we won’t know the dominant type (which will more than likely decide the course of treatment) until after surgery, but the question of which is the dominant type helps decide the type of surgery to be done.

The surgery originally scheduled for this Friday is now on hold for at least a week, and the surgeon and the oncologist are conferring today. The rational side of me is struggling to understand why two doctors can’t look at the same pieces of data and arrive at least at similar conclusions, but the best explanation I’ve been given for this stop/go roller coaster we’re on is this: The surgeon is the expert at the mechanical processes of treatment, while the oncologist is the expert at the biological processes, and we need to make sure there is some consensus between not only them, but between them and Jessica. As opposed to engineering, medicine is a soft science. We can’t just define and solve the correct set of equations. We have only unknowns and potentialities to supplant the facts and data we are used to dealing with. Even though a particular surgery was already scheduled, the oncological consultation was a scheduled and necessary pre-surgery step. It just happens that in our case, it may alter the surgical plans. When we asked about the need for expedient action, we were shocked to learn that the oncologist estimated (based on current size and type of cancer) that the tumor had been growing for over a year and a half, doubling in size roughly every eight weeks. If we hadn’t being doing yard work a few weeks back that caused Jess to massage her sore pectorals in the shower, she still might not have found the lump. Ladies, I tell you this in all love and seriousness — if you do nothing else today, do your monthly breast self examination. Gentlemen, if you do nothing else today, remind your wife/girlfriend/sister/mother to do her exam.

In the “Just When You Thought It Couldn’t Get Any Worse” department, we were scheduled to talk with a radiological therapist this afternoon to go over the possibilities of success in treating a potentially sarcomatic tumor with a lumpectomy and radiation therapy, but another problem has surfaced. We thought Jess was having some side effects from all the tests done last week. She awoke about 1:00 AM last Friday morning with terrible pain in all her joints. The radioactive isotope used as a tracing element in bone scans pools in the joints to help detect cancer at these locations, so we suspected she was having some adverse reaction to this isotope. The pain went away by Friday afternoon, but was replaced by a slight fever Sunday morning. By Monday, she had started breaking out in a rash. We didn’t know if it was from the chemicals or if it was or stress-induced or what, so after the oncology appointment she went to our GP. In a million years we wouldn’t have guessed — Jess has chicken pox. That’s right — chicken pox. Good old “didn’t you have those as a kid?” chicken pox. Well, she didn’t. We haven’t a clue as to where she might have picked it up, but it’s a fair guess that her immune system is down a notch with all the stress, which made her much more susceptible. If any of you have not had chicken pox and have come in contact with Jess in the last ten days, you might be on the lookout for the symptoms described above.

The radiological meeting has been rescheduled for next Monday when she is no longer contagious, and she is home from work until at least then. Microsoft has been tremendously helpful thus far. The visits to doctors and hospitals have nearly exhausted Jess’ sick leave, and she wants to save her short-term disability for whatever combination of surgery/chemo/radiation she ends up doing, so her boss has worked out a way for her to telecommute part-time (including the possible subsidizing of an ISDN line to our house — Boeing types should mention that to your managers!) and not have to take any unpaid leave. My co-workers have also been very patient with my erratic hours and short temper.

We wish we had better news. So many of you have honeymoons, pregnancies, schoolwork and all sorts of happy, positive things going on that it is quite difficult for us to tell you these things, and we understand that they are hard to hear. If any of you are uncomfortable or desire less detailed or less frequent information, please do not hesitate to contact us. Also, do not be afraid to call. Yes, we’re juggling all sorts of crap and the phone is very busy, but the last thing we would do is to turn away another voice of support. Sometimes we get pushed a little far and let the answering machine run interference for us, but leave a message and we’ll definitely call you back. E-mail has proven itself a reliable means of getting information to geographically diverse locations, but it’s a bit impersonal. We are enlisting the aid of counselors and support groups to see us through this, not only because the mental strain nearly equals the physical, but because simple human interaction is essential for the healing process. We are not at 100%, but please don’t let this stop you from calling or coming by. Again, our sincerest thanks for all your support, and we’ll keep you informed…

JESS-O-GRAM #5 (11/19/97)

Well, since the last update the optimism pendulum has swung back to at least the middle, if not slightly to the upbeat side. The latter half of last week was a flurry of consultations between our three key medical personnel: our surgeon, our medical oncologist and our radiological oncologist. To distinguish the between the two oncologists, the medical oncologist is the specialist who will determine the types and dosages of chemotherapy Jess will receive if we have to go that route (“The Bartender” in the lingo of our dark medical humor), while the radiological oncologist (logically) is the specialist in radiation therapy.

Jess’ chicken pox turned out to be a very mild case, which is somewhat unusual for adults, but nothing so far in this entire ordeal has turned out to be ordinary. By last Monday, she was able to return to work. Monday afternoon we had a good meeting with the radiological oncologist, if any meeting of this sort can be classified as “good”. She went over what historical data there is on Jess’ type of tumor (including what turned up in the literature search by the medical oncologist), gave us a complete overview of what’s involved in the process of radiation therapy, detailed the risks and benefits, and spent a lot of time answering our questions.

So, despite last week’s side trips, we have arrived back on Plan A, just one week later. We have a pre-surgery meeting tomorrow morning (11/20) and Jess is scheduled for surgery (lumpectomy) this Friday at 10:00 AM. Her decision to go with a lumpectomy was based on several things. First, for her type of tumor there is no medical evidence to suggest any tangible benefit to be derived from a mastectomy as opposed to a lumpectomy. This information is based not only the literature search, but from consultations by our medical team with many of the leading cancer research institutes in the U.S., including the Sloan-Kettering Cancer Center in New York and M.D. Anderson Cancer Center in Dallas. Second, the amount of tissue taken out around the tumor (called the margin) is typically about one to two millimeters. Our surgeon is planning to take a margin of about a centimeter. Also, as I reported before, the location of the tumor lends itself well to a lumpectomy. If the tumor had been centrally located in the breast, or back against the chest wall, then a mastectomy would have been a no-brainer (“You mean a no-breaster!” she says laughing). This 50-100% increase in planned margin and the superficial location of the tumor made the medical oncologist much more comfortable with the surgeon’s approach — comfortable enough to alter his initial recommendation for a mastectomy. Consultations with the other cancer research centers also yield nothing suspect about this approach. Third, treatments that we (and much of the popular literature) thought were one-shot deals turn out to be somewhat repeatable. If there is a recurrence in the same breast, she can go back and have a full mastectomy done. Chemotherapy is repeatable. Even radiation therapy, with close control over location and dosage, is repeatable. In summary, not everything rides on this surgery.

Mentally, at times Jess is fairly calm and confident. But there is still a large element of fear in the air. I suffer most from the Demons of Distraction. I set my keys down and those pesky demons whisk them away to a place I’ll never think of looking. Fortunately, living in Seattle I don’t have many occasions to set my sunglasses down, or they’d hide those too. Last week there weren’t many jokes, but we’re trying to maintain our humor. It’s kind of like mountain climbing — somewhere above 11,000 feet I usually stop making jokes (right Mike?). There is a lot of waiting. We should have the post-surgery pathology report by next Wednesday (11/26), which will lead us to the next steps as far as treatment.

On an interesting side note, owing to the rarity of Jess’ tumor her case has achieved a degree of celebrity among the local hospitals and research centers, and her progress will be watched closely and documented. She represents one of the few cases where a tumor of this type was caught fairly early (most of the cases in the documented studies were advanced Stage III and IV tumors), and hopefully her treatment data will be of use to other women down the road. The pathology report is scheduled for nearly nation-wide distribution. Keep your fingers crossed…

JESS-O-GRAM #6 (11/20/97)

The pre-surgery meeting this morning was tolerable, and (as always) there’s some new information. Based on further consultations with both oncologists and other cancer surgeons, our surgeon has decided that a 2-3 cm margin would give her the best chance of getting all the nasty metaplastic stuff. The initial estimate of the tumor maximum dimension of 2.4 cm has been revised to 2.7 cm based on another review of the mammogram and ultrasound results, but the opinion of the radiological oncologist was that there is usually some visual enlargement on the mammograms and that the actual tumor is probably slightly smaller. In any case, we are now talking about removing roughly a 5-6 cm sphere of tumor and surrounding tissue. This will probably now require shaving some of the pectoral muscle, but shouldn’t result in any loss of strength or restriction of movement. While the superficial position of the tumor has its advantages, there is one drawback that we weren’t clear on until this morning. Because the margin is a measurement that surrounds the tumor in all directions (concentric spheres for you left-brainers), the skin over the tumor within the bounds of the margin will have to be removed. This will require a more drastic set of incisions, and will result in additional external scarring. Intellectually at least, physical scars are the least of our worries at this point.

The surgery has also been moved up to 7:30 AM tomorrow, which we were hoping for. Getting up and then having to wait several hours before checking in would have been nerve-wracking. The three procedures (lumpectomy, lymph node sample extraction, and portacath insertion) should take a total of about 2 1/2 to 3 hours. Tomorrow also happens to be my sister’s birthday (Hi Beth!), so the date is a good one. Last Monday was the 10th anniversary of our first date (a Def Leppard concert in San Diego), and this Sunday will be the 5th anniversary of the date I proposed to her, so we are surrounded by good omens.

Jess will be off from work a minimum of two weeks. While some patients recovering from this type of surgery have been up and running about in as little as three days, and there is every likelihood that Jess will too, we both think it’s important that she take some time to heal after the physical and mental trauma of the last few weeks (we’re hoping the Huskies find a way to beat the Cougars in Saturday’s Apple Cup to help lift her spirits). Jess’ mother is flying in tonight, and we will be having a quiet dinner at our favorite local Italian restaurant (Lombardi’s in Ballard). We’re not optimistic about getting much sleep tonight, but we’ll see how it goes. Again, please feel free to forward these notes to anyone you feel would want to know, or have them send me their e-mail address to add to the list. I will try to drop by work and get a report out tomorrow afternoon, but I think you all understand that these updates are of secondary importance. Please keep Jessica in your thoughts. Show time…

JESS-O-GRAM #7 (11/21/97)

So far, so good. Jess is out of surgery, out of the recovery room, and sleeping. In the discussion I had with the surgeon, she said everything went “great” and she was able to take “good, wide margins”. She said Jess “sailed through it” and there were “no complications”. She did end up having to shave a bit off the pectoral muscle on the posterior side of the tumor, but she didn’t seem overly concerned about it. Jess is already able to move her left arm fairly freely, so preliminary indications are that it will have no residual effect. All her incisions are sutured and then covered with a clear protective wrap. This will allow her and her doctors to monitor healing without having to undo any dressings, and will also allow her to bathe. She has a drain line linked to the main breast incision, which will have to monitored and emptied.

Things were a little tense at the start. While finalizing all the consent forms, the pre-op nurse gave Jess some pamphlets and other materials about recovering from this type of surgery, which indicated among other things that 50% of recovering patients will experience some permanent loss of feeling in the area surrounding incisions. More new and frightening information right before surgery is NOT what any of us needed. Her mother and I also got a little frenetic when the duration of the surgery passed three hours, but it was over in 3:15 (7:30 AM – 10:45 AM). Jess was in the recovery room for just short of two hours after surgery while the anesthetic wore off, and was then moved to her regular hospital room. All her vitals are normal. She was on a metered morphine drip for pain when I first spoke to her (which made her pupils shrink to about a millimeter in diameter), but she was semi-lucid and making jokes. The morphine makes her sick, so she was also on an anti-nausea medication. She was able to walk (with assistance) to use the restroom, but vomited once she got there. The vomiting caused quite a bit of pain, so once she was back in bed she pinged the machine for an additional cc of morphine, and then promptly fell asleep. Her mother stayed with her while I drove the few miles south to work to make some phone calls and send out this note. I’m heading back to the hospital now. If she’s feeling real strong, she may come home tonight, but in all likelihood she will stay overnight.

The initial pathology report should be out early next week, but the estrogen receptor tests will take a little longer. With the holiday break, we will probably not have the full story until the first or second of December. Right now it’s time to concentrate on healing from surgery. Jess appears to be over the first of many hurdles, and we thank you again for all your love and support…

JESS-O-GRAM #8 (11/25/97)

(My apologies to anyone who already received Jess’ note yesterday — there seems to be some overlap on our distribution lists)

Late yesterday we received the most encouraging news to date: the initial pathology report is complete, and there is no evidence of lymph node involvement — none! Also, the tumor (2.6 cm) was extracted with “clean margins” (no cancerous invasion of surrounding tissue) and appears be carcinoma dominant, with only a few sarconomus masses present. This does mean Jess will still have to have both chemotherapy and radiation therapy, but the odds of a cure have just tilted dramatically in her favor. We meet with the medical oncologist again on December 3rd to see where we go from here.

She appears to be healing rapidly. She stayed overnight at the hospital Friday night, and she was released around 11:00 AM on Saturday morning. One funny note — as we were out taking a walk around her floor Saturday, we met her surgeon coming out of the elevator. After being counseled on post-surgery nutrition, we were quite surprised to catch the surgeon slurping on a jumbo coffee and chowing down on a big gooey maple bar. Brings to mind something about the cobbler’s kids not having shoes. Anyway, Jess is on a fairly steady stream of Vicadin for pain. Not enough to put her out, but enough to “soften the edges” as she says. Yes, her pupils have returned to normal size :). By Monday, the volume of fluid drained was down to 58 cc, compared to 178 cc for Saturday. When it drops below 30 cc in 24 hours, she can have the drain line taken out via an outpatient procedure. No signs of any infection or other post-surgical complications. As a precaution, we plan to hook her up with a physical therapist to work on the arm. This will help not only with strength and range of motion, but will also help prevent or control various arm swelling problems she is at risk for after this type of surgery. Even with things going as well as they appear to be, she will stay out the full two weeks, and has given herself permission to take a third if she feels she needs it — more than just the body healing here.

Sunday was a bit of a rough day, due to pain in the affected areas, stiffness from sleeping on her back (she’s a side/stomach sleeper), and a bit of post-surgical “crash”. The body treats surgery as a wound — it’s intended as a benevolent wound to be sure, but the body really doesn’t know the difference. This triggers the release of adrenaline and various other steroids into the bloodstream. The body continues on this steroid plateau for several days, and then shuts the chemical release down completely. This shutdown results in physiological crash that our surgeon described as similar to post-partum depression (which leaves some of us with only an intellectual reference, but it was the best description she had), involving both physical and emotional reactions. The spells were very difficult to endure, both for Jess to go through, and for her mother and I, who wish we could do something besides just hold her. We’re both very tired, but we’re hanging in there. Our discomfort is really nothing compared to what Jess is dealing with.

Yesterday, her disposition was much improved, and she and her mom took a walk around Green Lake (about a three mile walk for you non-locals). She then took a nap of several hours, which she described as “some of the best sleep [she’s] ever had”. Her time is divided between watching TV, reading, doing crossword puzzles, handling multiple phone calls, the occasional (non-work-related) e-mail, and resting. The range of motion on her left arm has increased quite a bit. There is some numbness on portions of her arm, but it’s way too early to tell extent and/or duration. Her biggest problems right now are itchy incisions, a few sutures that are poking her, and preventing the cat from pulling the drain line out prematurely. But, as she figures, if those are her worst problems she’s doing pretty damn well. Your collective positive thoughts appear to have worked, and we’ll keep you posted…

JESS-O-GRAM #9 (12/9/97)

My apologies for the delay is getting this one out. Life has been rather full lately, and this installment has become something of an epic.

As we head into the second phase of Jess’ treatment, I find myself looking back at what a difference a year has made. For us, 1997 has been a year of extreme highs and lows. It was only last January we found out that Jess was pregnant (yes, intentionally), and we were awash in the fears and hopes of impending parenthood. While her miscarriage in February seems fortuitous in light of recent events, it didn’t feel so at the time. Our grief was compounded by my father’s death in late March, which remains emotionally unresolved. Things took a decided turn for the better mid-year, as Scott and Tara’s wedding in early June was easily a high point of our lives. It was a week in the Sonoma sunshine spent reminiscing and reveling, subsisting on great Italian food and extraordinary wine, rediscovering old friends, making new ones, and removing any doubt that I may just need to leave the sport of golf to more capable hands. It was also wonderful to host Scott and Tara here in Seattle for a few days on their way to honeymooning in the San Juan Islands. Jess’ 40th birthday party in August extended the happiness, as did our trip to Paris in September. November and December we have shared with you (mail me if you are interested in any previous Jess-O-Grams) as we bounce along on this roller coaster, alternately submerged in the struggle with this potentially deadly disease and buoyed by the thoughts and actions of friends and relatives.

This past week brought the exceptionally painful news that guitarist Michael Hedges was killed in an automobile accident the previous weekend. For me this news makes the world a slightly colder place. He redefined not only my own approach to guitar, but my entire approach to music in general. He was the only musician who ever lived about whose work I was absolutely rabid. He was my Elvis, my Hendrix. Fortunately, Jess and I had the opportunity to see him in concert many times both here and in San Diego, and were also able to introduce many friends to both the music and the musician. I doubt that there will ever be another like him. A sad irony is that my very first clumsy attempts at making music on the guitar were the songs of John Denver, while my most recent clumsy attempts focused on Michael Hedges. Musical icons from my childhood and adult life both taken in the same year. Another dark stone to lay in our 1997 basket alongside the shiny ones.

Meanwhile, back to the medical front. Last Thursday, Jess had her drain line removed and all the staples and sutures taken out. According to her surgeon, all of her incisions are “healing fabulously”, and she is off of the painkillers. Some of the numbness on the back of her arm has disappeared, although it appears that due to sensory nerve damage from the incision some of the numbness in her armpit will be permanent. This is fairly common, and she was aware of this risk beforehand. The appointment with the medical oncologist last Wednesday confirmed what we already suspected — Jess’ treatment will be a combination of chemotherapy and radiation therapy. While the post-surgery pathology tests determined that the tumor was carcinoma dominant, with only a few sarcomatus masses (Come on! Sing it with me — “supermetaplasticsarconomasimplechronichalitosis”!), it was still a Grade 9 (of 9), the most aggressive form. Chemotherapy was recommended to go after those microscopic bits of cancer remaining after the surgery, before they can get together and start a new tumor. If she had only the more common form of breast cancer, she would probably not have elected to use chemotherapy, but an aggressive cancer requires aggressive treatment. The tests also determined that the tumor was estrogen receptor negative, so using hormone therapy (Tamoxifen) won’t be an option. This isn’t necessarily bad, and wouldn’t have changed the current course of treatment, it’s just one less tool Jess has to fight off recurrence. Many people have written me and said they liked having some technical stuff included in these notes, as it broadens their understanding of what is happening. For those people, I’ve included the following (short) primer on chemotherapy.

Cancerous cells grow and divide rapidly. Therefore a logical approach in treating it would be to administer chemicals that retard or suppress rapid cell growth, which is precisely what chemotherapy does. Of course all cells grow and divide, but most do so at a fairly slow and static rate — you’ve probably noticed that you haven’t gotten any taller since puberty when all your cells were on a rapid growth program (no guys, that extra bit growing around your middle is due to something else entirely). The rapid growth cells in adults (even adults that act like children) are found in the hair, nails, and the lining of the intestinal tract from the mouth to the, uh, exit ducts. They are also found in the bone marrow, which produces red blood cells (oxygen carriers), white blood cells (infection fighters) and platelets (clotting agents).

The chemicals that suppress the cancer cell growth also suppress the production of these other rapid growth cells, which explains why hair loss, darkening of the nails, mouth sores and nausea (stomach irritation) are very common side effects of chemotherapy. Other common side effects are illnesses brought on by immune system suppression (low white blood cell count), so-called opportunistic infections. Once the chemicals have passed through the system, the production of these cells begins to return to normal (one exception is high-dose chemotherapy, see below), including any remaining cancer cells. The “average” person’s WBC (white blood cell) count reaches a low about 10 days after receiving a chemotherapy injection, and returns to the pre-dose count about 21 days after the injection. This is why chemotherapy is usually given at three to four week intervals. Chemotherapy works because the rate at which the white blood cell count returns to normal (meaning the body is “ready” for another treatment) is faster than the rate at which (most) cancerous cell production returns to normal. Left brain translation: If you plot the WBC count vs. time, you would see a repeating wavy pattern of “normal” down to “low” and back up to “normal” (I know you want to say it, so go ahead. Constant amplitude oscillatory spectrum! Very good — now please sit down). If you plotted the number of remaining cancer cells (which is unfortunately impossible to determine, but stick with me here) on the same axis, you would see the number drop down after the initial dose, then start to rise with the WBC count, only to dip down even lower with the second injection (because the WBC count has returned to normal before the cancer cells can recover fully), then start back up and so on. Over the course of treatment, the number of cancer cells “ratchets” down to zero.

The other mechanism that makes chemotherapy effective is that since the chemicals are injected into the bloodstream, they are able to fight microscopic cancer cells wherever the blood goes. One trick we have been told is to suck on ice cubes during the treatment, which reduces the blood flow (and therefore volume of chemicals) to the cells around the mouth, thereby reducing the intensity of any side effects at that location. This trick is safe because cancer does not usually spread (metastasize) to the mouth cells. Hair loss can actually be minimized or prevented by wearing an ice cap during treatment, but cancer has been known to metastasize in the scalp. Temporary baldness seems infinitely preferable to potential brain cancer.

The oncologist outlined four of the different approaches currently used in chemotherapy. The first two were termed standard chemotherapy, which means that these protocols have at least five years of documented studies of their effectiveness, side effects, etc. after FDA approval to use the drug. These versions of chemotherapy can reduce the risk of relapse by about a third. For example, pre-menopausal women with regular carcinoma-type breast cancer and no evidence of cancer in their lymph nodes (called node negative) are on average only about a 10% risk for recurrence. Chemotherapy will only drop this risk to 6 or 7%, so chemo is not usually recommended for these women — the benefit gained doesn’t really offset the physical discomfort of the treatment or the risks of potentially permanent and damaging side effects. The oncologist made an offhanded guess that Jess, although she is pre-menopausal and node negative, was a 45-60% risk for recurrence based on the aggressiveness of her tumor. A 30% reduction leaves her at 30-45% risk, which are still very large numbers.

The second two protocols are called investigational chemotherapy, because they use newer drugs and in different combinations than the standard protocols, and have not yet completed the five year study period. They are also called high-dose, (logically) because they are also substantially more toxic than the standard approaches. The most severe form of high-dose treatment involves removing (harvesting) some of the body’s own cells, then giving doses of chemo sufficient not only to suppress bone marrow function, but to kill the marrow outright. Once the series of treatments is complete, the harvested cells are re-injected to jump-start the patient’s own cell production. This protocol is used mainly for patients with either systemic cancers (like cancers of the blood) or cancers that have metastasized to a significant percentage of the body. This protocol was not recommended for Jess, so I won’t go into all the risks (which are numerous and significant). Many of you at Boeing may know about Pat Sobota here at PSD, who has just gone through this procedure and appears to be making a solid recovery.

The protocol Jess and her oncologist have agreed upon uses a combination of newer and older drugs. In standard chemotherapy the chemicals are all mixed together (a.k.a. “The Cocktail”) for each treatment. In this therapy Jess will receive three treatments each of three separate drugs. The first drug, Adriamycin, is a veteran of many standard chemotherapy studies. Even though sarcoma in general does not respond well to chemotherapy, Adriamycin is regarded as the best drug available for treating sarcoma. Because this particular drug is being used, Jess will definitely lose all her body hair. The second drug, Taxol, is about 5 years old and although it is considered to be the best drug for treating carcinoma, it has not yet completed the studies required to be included in the standard treatments. Our oncologist predicts that once these studies are complete, Taxol will form the basis of most if not all standard protocols. The third drug, Cytoxan, is considered to be the third-best drug for treating sarcoma, though we never did find out what number two was. Jess will receive her treatments every two weeks, for a total of nine over eighteen weeks.

But “Wait!” you say, “What about her WBC count — won’t it take three weeks to bounce back?” Very good — you were paying attention. Another difference between this protocol and standard protocols is that she will receive regular injections of a substance called G-CSF (granulocyte colony-stimulating factor for those keeping score at home). G-CSF is a substance that occurs naturally in the body, where it stimulates WBC production. This will prevent her WBC count from falling as low as it would otherwise (but doesn’t have the same effect on the cancerous cells), and allow it to recover faster, which will allow more frequent treatments. Her WBC count will be monitored for the entire process, but at the outset it is predicted that she will be able to handle injections at about two week intervals. Although this protocol, called Adjuvant ATC in the literature current enough to mention it, is still in the investigational stage, it looks to be the best risk/benefit tradeoff for Jess’ situation. Her oncologist reported that there are studies in the 2-3 year range that show very encouraging results. Unfortunately, another feature of the newness of this protocol is that the reduction in risk of recurrence cannot be statistically determined yet — all we know is that it is something better than standard chemotherapy. She will have her first injection tomorrow (Wednesday, 12/10) afternoon. Although this is fairly soon after surgery, her surgeon concurs with the decision to begin immediately. Again our mantra — “Aggressive cancer, aggressive treatment”. Because even the number one and number three drugs for sarcoma are not usually as effective as Taxol is against carcinoma, chemotherapy will be followed by five to six weeks of daily radiation therapy to treat any remaining sarcoma. We look forward to having a “Last Treatment” party sometime in June.

There are bits of good news is all this. The side effects of Adjuvant ATC are apparently a bit less intense than with other forms of chemotherapy. The primary symptoms will be fatigue (usually about a 15% drop in energy) and, again, body hair loss. The other optimistic information is that while chemotherapy will slam her into menopause (menstrual cessation, hot flashes, the whole bit), since Jess is only forty years old the effect may not be permanent. Apparently the closer a woman is to reaching menopause naturally, the more likely the body is to throw in the towel permanently when subjected to chemotherapy. The oncologist said there was substantial evidence that women into their early forties returned to normal menstrual activity after chemotherapy.

With decisions about treatment in place, and since she was feeling fairly strong, Jess returned to work yesterday (Monday, 12/8). Her office has been 110% supportive through his whole thing, and I know they will provide an atmosphere that will let her balance work and recovery. Her boss did something amazingly cool. At his request, a support group called Microsoft Cares brought an oncologist in to talk to her department. The oncologist talked about cancer, types of treatment, what the patient is going through, what co-workers can expect to see, and how they can help. The presentation was followed by a question and answer session, which by all reports was very helpful. Our thanks and major kudos to John Battle and Microsoft.

Due to uncertainty about how Jess will feel during chemotherapy, our plans are for a bit of a “minimalist” Christmas, with a reduction in the usual holiday madness. We’ll know much more after the next few days. Those who know us know that humor is as much a way of life for us as it is a simple defense mechanism, so I’ll leave you with a bit of humor (some of you have seen this already) from Jess:

“Things I Have Learned Having and Recovering from Breast Surgery”

1. Surgeons eat really badly (my surgeon came to see me the day after the surgery with a large coffee and a maple bar…).
2. Once the anesthesiologist administers the sedative you will probably babble.
3. Morphine doesn’t necessarily guarantee a good night’s sleep – but it makes it more fun.
4. You never know you will miss your armpit until you can’t feel it.
5. When you are out in public make sure the drain line doesn’t show through your clothes. (It puts really puzzled looks on the faces of your spouse and mother…).
6. If your incision is unguarded the cat will probably step on it (this has happened a bunch of times, mostly when I don’t get up to feed him).
7. Never, ever check for lumps in your breasts when you’ve forgotten you have a portacath that makes a nice big lump (Scared the s**t out of me!!!).
8. Don’t read books about breast cancer before going to sleep.
9. The ends of sutures will poke you at the most inopportune times causing you to jump and frighten the cat which causes #6.
10. Napping every day is a lot of fun.

I’ll send out another update sometime after the first round of chemotherapy tomorrow. Take care…

JESS-O-GRAM #10 (12/15/97)

Jessica received her first chemotherapy treatment as scheduled last Wednesday. The treatment itself was rather unremarkable, perhaps because none of us was quite sure what to expect. The oncologist spoke to her for about an hour, and she had her blood counts (RBCs, WBCs and platelets) taken. The blood was actually just a small sample from a fingertip lancing (remember blood typing back in high school biology class?), and not drawn from the portacath as we had thought it would be. She was then started on IV drips (via the portacath) of saline and an anti-nausea medication (Kytril). The saline solution serves as sort of a “base” to help carry and diffuse the other drugs. The Adriamycin is a wicked-looking red compound (or “it looks like cherry Jell-O”, for those less anthropomorphically inclined) which was administered manually from two monster (“very large”) syringes into a small shunt in saline line. Both the Taxol and the Cytoxin will be given via a separate IV drip, but the Adriamycin is a vessicant (meaning it can cause damage if it gets outside the veins), so the syringe gives the nurse better control over the application. After the Adriamycin was administered, the portacath was flushed out with a Heparin solution to prevent clogging. The total time involved was about two and a half hours, though according to the nurse the Taxol and Cytoxan may take a bit longer. Jess will receive injections of G-CSF (see J-O-G #9) every day from Dec. 11th through the 21st. These are given subcutaneously in the shoulder, which (depending on which nurse does it) doesn’t hurt too badly.

The chemotherapy stations at the Northwest Cancer Center are quite comfortable. Each area has a padded (reclining!) chair, a video player, blankets, guest chairs, and a privacy curtain. There is also a large selection of books, magazines, and videos to select from. Her mother and I just sat and stared at her during the whole procedure, as if we expected her to begin vomiting and her hair to begin to fly off instantaneously. Didn’t happen. Other than some small irritation around the portacath site, she felt fine.

She actually felt well enough to go to work on Thursday, though she had begun to feel a bit “flu-ish” (kinda tired and achy) by midday. Thursday afternoon she had a follow-up appointment with surgeon to check on the incisions and the site where the drain line was removed (a procedure we since have nicknamed the “Getthisouttomy”). Everything looked to be healing well, and the butterfly bandages on the incisions were taken off. She continued to feel “not quite right” on Friday, and she (actually “we”) took the day off. By Saturday morning she was vomiting and unable to hold food down. We got her mobile enough to get to Northwest Hospital for her G-CSF shot, but the balance of the day alternated between sleeping on the couch and running to the bathroom. After eating only a few crackers, a few anti-nausea pills (some of which didn’t stay down long enough to do any good), and a few sips of water and flat Sprite during the day, she was able to keep some potato(e) down by dinnertime. Prior to Saturday, she hadn’t thrown up since our trip to Russia in 1993 (mixing great quantities of vodka and champagne – a recipe certain to end in disaster!), and had forgotten just how miserable the experience is. Sorry we didn’t make it to the Microsoft Christmas party Saturday night, but I don’t think we would’ve been much fun. Hope all who attended had a good time in our stead. Never being one to miss an opportunity to show the Boeing folks how real companies treat their employees, I should point out that her division’s party was dinner and dancing at the Seattle Art Museum. Again ;).

The various literature we have reviewed indicates that such flu-like symptoms are one of many normal reactions to chemotherapy. The fatigue and achiness are due to the body’s reduced ability to get oxygen to the muscles, which is caused by — wait for it — suppressed red blood cell production. During the previous week, Jess had spoken with a former co-worker from San Diego who had been through the same exact chemotherapy protocol and she described similar reactions. For this woman, the second day after the treatment was actually the worst. For Jess, so far it looks like the third day. Her appetite returned (with a vengeance!) Sunday, though she still slept quite a bit during the day. The nausea was gone, but it was replaced by another pain. As the G-CSF stimulates WBC production, it causes some flushing and swelling in the bone marrow, which can cause pain in the bones — Jess seems to feel it most in her sternum. She felt strong enough to return to work today (Monday).

The irony of all these things hurting her in the process of healing her is difficult for me to handle. Jess thinks she is being “a wuss” by sleeping so much, but by Sunday night she was cranking out Christmas cards. In any event, she’s made it through the first treatment — eight to go. Speaking of true colors, one of you (yes, an engineer — and you know who you are), mailed me last Thursday and voiced the opinion that the plot of WBC count vs. time I described in JOG #9 should be thought of as a waveform, and not a spectrum as I had indicated. I argued, and successfully I think, that the procession of data from the “normal” count the “low” count and back to “normal” could indeed be thought of a waveform, but a connected series of these waveforms, especially when plotted in the time domain, definitely constituted a spectrum. Further, I pointed out that…SHUTUP!! Shutup all of you! You’re all sick! Sick! Do you hear me? Now I want you to march right up to your rooms and practice your Fourier Transforms until you think you can come back down here and act like normal people! Ummm…yes..well..uh…sorry.

Her next treatment is scheduled (blood counts willing) for Christmas Eve, Dec. 24th. We hope this will allow her to feel decent for Christmas Day, which should be pretty quiet around our house. Unless something big happens between now and then, this will be the last Jess-O-Gram for 1997. Our warmest thanks for the outpouring of love and support you have all shown us during this difficult time. Our thoughts and best wishes are with you and your families for the holidays. Recent additions to the distribution list can reply to me here (old email address removed) for “back issues” of Jess-O-Grams. Please distribute these to anyone you think may want to know, or contact me with names and e-mail address to add to the list. We look forward to sharing better times with you in 1998. Take care…

JESS-O-GRAM #11 (1/8/98)

The obvious medical aspects aside, 1998 is already shaping up to be vastly different from 1997. At this time last year we were still under the 18 inches of snow dropped during the Christmas and New Year’s Day storms. So far this winter, we have only flirted with snow a few times at our house, and nothing has stuck. Some experts are blaming El Nino, but I suspect we inadvertently precluded any possibility of snow by actually purchasing a snow shovel last August. Nonetheless we are winterized — the hoses are stashed in the garage and the spigots have donned their foam winter hats. The trees are pruned, the gutters are cleared, and the flower beds are layered in bark. I hear all you (present and former) Midwesterners and Easterners snickering at our paltry preparations, so go ahead, get it out of your system. Of course, all the San Diegans are saying, “winterize?” We hope 1998 has found you and yours healthy and happy.

Jess received her second dose of Adriamycin on December 23rd. This was one day ahead of schedule, but her WBC count had bounced back sufficiently to handle it. Actually, we don’t think it ever went down. Her pre-chemo count was around 9K (“normal” is anywhere from 4K to 10K). Boosted by 11 straight daily injections of G-CSF, her count the day of her second treatment was an astonishing 23K. As her oncologist said – “This lady can make cells!“. He then reduced her prescribed G-CSF injections by one day. The third day after treatment was again the worst. The side effects seemed less severe this go-around, but were longer lasting. She bounced back pretty much to 100% the week following her first treatment, but after the second dose the fatigue has begun to be cumulative. Even though she was able to return to work, she experienced continuing low-level nausea. The queasiness lasted well into the second week, and prompted a few unpleasant surprises when trying to brush her teeth. Her senses of smell and taste are a bit jumbled. Some things that smelled and tasted good before treatment have lost their appeal, and when she finds something she can eat there is no guarantee it will sit well her stomach. Coffee, previously a morning staple, has become a bit of a culinary pariah. The slight bitter taste of some blends is very reminiscent of the metallic aftertaste from the Adriamycin – a most disconcerting flavor. The caffeine is also an unwelcome agitation to her digestive system. Sorry Starbucks…

The most noticeable side effect is that her hair began to fall out on Dec. 24th (“the Rain of Hairor has begun“, she said). This was also slightly ahead of schedule — “typical” hair loss begins 17-21 days after the first treatment (the 24th was just 14 days). I swear Jess is trying to bring this whole thing to completion ahead of schedule and under budget. “I’d like to call your attention to this Chemotherapy Gantt chart, which shows we should be able to begin Phase II much earlier than scheduled. Bob, do you have those dollar cost averaging figures?” By the 27th, it was coming out in clumps, and she elected to have her hairdresser shave her head. This was done partially to relieve the physical discomfort of the hair falling out, but mostly it was to relieve the anxiety associated with the progressive defoliation (ever had a dream where your teeth crumbled or your hair fell out?) and to preserve some semblance of dignity. Breast cancer, among its other insidious qualities, is a master at breaking down personal dignity. Treatment can permanently alter your appearance, which often triggers an erosion of self-image, as both breasts and hair are attributes which our society, sometimes against its own best intentions, holds forth as simple-minded measuring sticks of femininity. The disease itself can make you distrust your own body. Cancer isn’t something that you catch from somebody. It isn’t something that develops as a result of an injury or accident. It’s your body’s own cells killing themselves — a sort of internal cellular revolution. Jess’ tumor was growing so rapidly that it outgrew its own blood supply. As a result, the cells in the tumor interior were already dead (called cellular necrosis) by the time of her surgery. This idea of bodily betrayal can give rise to the worst sort of fears. For those of you who saw the movie Arachnophobia, remember how afterwards you thought every little movement out of the corner of your eye and every little itch on one of your limbs was a spider? After her initial diagnosis, Jess felt like every little ache or discomfort was another tumor, or a sure sign the cancer was spreading. For now, she has conquered these fears. But what she will have to go through mentally after treatment, living in the shadow of recurrence, remains to be seen.

For Jess the difficulty with her hair is not so much the fact that it’s gone. She is actually quite at peace with that. The difficulty is that this is the first truly external sign that she is sick. Scars from surgery are easy to conceal. Nausea from medication can be masked with a brave face. With her hair gone, she is broadcasting via her appearance that something is seriously wrong. All in all, her reaction has been very positive, possibly because she has the good fortune of having a well-formed head. This may have been much more traumatic if she still had her waist-length hair of years past, or if her bare noggin were a less pleasant sight. She is content enough with her appearance not to bother with any sort of wig. She rotates through her newly assembled collection of hats, though these are worn simply to keep warm. Thanks again to all those who gave hats for Christmas, and special thanks to Vicki for the loaning her the long, black Elvira wig!

The period from Christmas to New Year’s Eve was a very relaxed and low-key affair, with lots of chicken soup, football, and visits with friends. Jess received her third dose of Adriamycin on January 6th. With the reduction in G-CSF injections, her WBC count was only up to 11.5K – still plenty to allow her to have the treatment. The reduced G-CSF application also seems to have eliminated the sternum pain she reported during the first series. Her red blood cell count is falling, however, which may explain the fatigue. The nurses will continue to monitor her, and she may need to go on medication to boost these levels. The oncologist suspects that her lingering nausea may actually be due to some form of gastritis (her esophagus is fairly ripped up from vomiting), and not the chemicals. She is now taking medication to reduce stomach acid. This is the final dose of Adriamycin, and in another two weeks she will start on Taxol. It’s hard to believe she is already a third of the way through the treatment. I’m starting to call Jess “the Lone Ranger”. . I said, I’m starting to call Jess “the Lone Ranger”. . “, Gee Rob, why is that?” Because she’s becoming chemo-savvy! Thankayou! Thankayou vurry much! You’re too kind! I’m here every night, with two shows on Sunday! And don’t forget to tip those hard-workin’ waitresses!

Jess has sent out a separate mail with the details of Operation Clear-Cut, the charity event Jess’ group at Microsoft is sponsoring, so I won’t go into too much detail. Basically, people are pledging donations to have a bunch of people at Microsoft shave their heads. These generous people have volunteered to lose their hair both to show solidarity with their “follically-challenged” coworker and to raise money for charity. I volunteered, but have been told by Jessica in no uncertain terms that I am not to even cut my hair, let alone shave my head. Microsoft will match all funds contributed by Microsoft employees, but all donations are being accepted. The event will be held January 20th, and will feature comic John Keister, host of (the local Seattle late-night TV show) “Almost Live”. All money raised will be given to the Susan G. Komen Breast Cancer Foundation, a breast cancer research organization that Jess selected. We are encouraging everybody to pledge or donate whatever they feel they can. Some of you have already made donations on her behalf to various agencies, and we cannot thank you enough. Mail, call or drop by if you need more details.

That’s where we stand. Tomorrow is another “Day Three”, so we may or may not be in. As usual, recent additions to the distribution list can reply to me here (old email address removed) for “back issues” of Jess-O-Grams. Please distribute these to anyone you think may want to know, or contact me with names and e-mail address to add to the list. Take care…

JESS-O-GRAM #12 (2/25/98)

It’s been a while since I’ve put one of these out, and I apologize for the gap. Life has become quite crowded again, forcing us to focus on select tasks at hand. Some of you have joked about receiving the “Cliff Notes” version of Jess’ condition. For those people, it may help you to remember that this forum serves several purposes besides distributing information. The volume of information and data being thrown at us is staggering, and this log helps keep it straight. More importantly, it is also a chronological log of her experiences for later (personal and/or medical) reference. For me, it has the additional benefit of being part of my own personal therapy — a digital support group of sorts where I can hash it all out and digest it. For the quick version, you can always call!

OK, where were we? Ah yes — snow shovels. Of course, of soon as I mentioned that we haven’t had snow — the weather felt compelled to make a liar out of me. Tuesday (1/13) we had a nice little storm that gave us 3-4″ of yard frosting, which in true Seattle fashion melted before noon the next day. Amidst the melting snow on the 14th, we had a bit of a scare. Tuesday Jess had complained about feeling weak and a bit dizzy, and we suspected it had to do with her blood cell counts hitting their post-treatment lows (right on track, 7 days after her last Adriamycin). However, by the morning of the 14th, simple tasks like cutting grapefruit for breakfast and getting dressed had become almost insurmountable tasks. She was scheduled for a G-CSF shot that afternoon, but we decided to get her in to the doctor early to see if she was having complications. As it turns out, her cell counts were not only low — they were through the floor (WBC count was down to only 2K). Her blood pressure had dropped to 90/50. Despite drinking up to two liters a day of water, she was also severely dehydrated. With her hit-and-miss eating habits, she was not getting the amount of sodium or electrolytes required for her body to retain the water — she was literally drinking herself into dehydration.

Basically, she had experienced a total metabolic crash. The nurses started her on a liter IV bag of Dextrose to help recover the 3-4 pounds of water mass she had lost since her previous treatment, and gave her the G-CSF shot. As I mentioned in JOG #11, her red blood cell counts had been falling over the course of her treatment, and her oncologist decided to put her on Erythropoietin (“EPO” in the nurses’ lingo) to stimulate red blood cell growth. With all the medicating and hydrating, it was a long day at the doctor’s office. While we were there, Jess also managed to demonstrate her ability to vomit spontaneously, which prompted her oncologist to prescribe yet another anti-gastritis medication. Where a year ago the center of our kitchen table was occupied by a single bottle of pre-natal vitamins, there now stands a small army of pill vials. The disparity of our plight now versus a year ago continues to amaze and confound me.

Jess received her fourth chemotherapy treatment on January 20th. This was the first dose of the second drug, Taxol. The procedure was basically the same as for the Adriamycin, except that Taxol is “spiked” directly into the IV bag instead of being hand-administered into the IV line. Many people experience anaphylactic shock reactions to Taxol, so an antihistamine (Benedryl) is added to the pre-chemo medications. For Jess, they have also added prescription-strength Zantac to the mix to help with her chemo-induced gastritis. She takes Zantac daily, but the IV is a convenient way to get a good dose. Even though Taxol is administered directly, the drip takes much longer than the Adriamycin. There are two reasons for this. First, Taxol is thicker than Adriamycin (and is also colorless, as compared to the bright red Adriamycin). The Taxol suspended in the bag of sodium chloride looks a bit like vegetable oil in water, and there is quite a lot of cavitation (sorry — non-engineering translation: “bubbles”) as it passes through the drip control. The second reason is a bit more unnerving. The Taxol must pass through a special filter before entering the body, because it can actually leech some of the plastic from the IV line. Great, and you want to put this stuff in my wife?? The entire process (blood work, oncologist consultation, pre-meds, Taxol and portacath flush) took about five hours.

Despite feeling a bit woozy from the Benedryl, Jess made a quick stop for lunch and we were off to the Microsoft campus for “Operation Clear Cut” that afternoon. The fund-raiser was an incredible success. By the time the last lock of hair hit the floor, fifty-six people (including six women) were sporting shaved heads, and over fifty thousand dollars had been raised for the Susan G. Komen Foundation. Apparently this was one of the largest single lump-sum donations the Foundation had ever received. We had people involved who also participate in other charity events tell us about large-scale events that took months of planning and only raised half the money this event raised in a few weeks. Nearly two hundred people attended the proceedings, which were held in the cafeteria of Jess’ building at Microsoft. Five local television stations (KING-5, KIRO-7, KSTW-11, KCBQ-13 and Northwest Cable news) covered the event, as well as KIRO radio and the Seattle Times newspaper. Microsoft provided food, and a supply of Red Hook, Pyramid and Sierra Nevada beer for those that needed a little artificial courage to go through with their pledge. The company also provided Microsoft baseball hats for the freshly-shorn volunteers. John Keister provided hilarious running commentary, and the afternoon was filled with energy and humor. For me, the most stirring moment occurred when Jess was addressing the crowd and asked how many people there knew someone besides her who was dealing with or had gone through treatment for cancer — more than half of the people in the room raised their hands. Despite the incredible amount of money raised, it seems there was a good deal of confusion about this being a “Microsoft only” event or my guess is the donation total would have been even higher. I would like to offer my sincerest thanks to those organizers and donors who gave of their time, their hair, their money, or all three. It was evident that concern and compassion are very much alive in what has become a rather crazy world. At some point, we will have scanned copies of articles and pictures, and I am working to get the taped news reports into digital format. Anyone whose e-mail system can handle attachments and is interested in receiving any of these when they become available, please let me know. On a disappointing note, the following Thursday the jeep was broken into again, and the stereo was stolen again. It’s kind of strange being exposed to some of the best and the worst human nature has to offer all in the same week.

Similar to Adriamycin, the Taxol side effects kicked in about 3-4 days after treatment. The most notable side effect she experienced was severe joint and muscle pain. This type of pain is a common Taxol side effect, and stems from the way Taxol inhibits cell growth. The following is taken from a pharmacological brochure on Taxol: During the stage in the cell cycle known as mitosis, the cell attempts to divide. At this point, the cell already contains a miniature supporting structure, a type of cellular skeleton. This skeleton supports the cell, gives the cell its shape, and also supports other structures within the cell. Just as your skeleton must be movable for you to walk, turn, and move your arms, so must the cell’s skeleton be movable. Taxol “paralyzes” this support structure inside the cell. The cell is then unable to perform any functions necessary for growth or reproduction, so it dies. Lovely description. Steroids such as Prednisone or Dexamethazone are often prescribed to combat the pain associated with this process. Yes, some people also use the popular alternative “Growyourown”, but as far as I know it’s still illegal in Washington. Call me naive, but I didn’t realize that so many Canadian snowboarders were undergoing chemotherapy. The catch is that you have to start taking the steroid before the pain kicks in. Jess felt she had weathered the pain from the G-CSF pretty well, and was a bit worried about the side effects of the steroids themselves, so she elected not to take any. Mistake. Big mistake. As she said on Friday (1/24), “If I ever again tell you I can take it – smack me!” The pain laid her low for the duration of the weekend, and began to dwindle just in time for the pain from the G-CSF to kick in the following week. If any of you ever have the desire to feel what it’s like to be utterly useless, I recommend trying to care for a person undergoing chemotherapy. Sometimes, there is absolutely nothing you can do but sit and watch them endure it all. The first round of Taxol was very difficult for all of us. Jess continued to receive G-CSF for the eleven days following the treatment, with three EPO shots thrown in along the way.

The week following her first Taxol, she crashed again, though to a lesser degree. She had supplemented her water intake with Gatorade and fruit drinks and was not so dehydrated, and was finally experiencing some relief from the EPO booster. By the second Taxol on February 3rd, she had begun to experience the second major side effect — the “Taxol tingle”. Taxol can cause nerve pain (neuropathy), which can manifest itself as numbness, tingling or burning in the hands or feet. Jess is experiencing numbness in both her fingers and toes. The condition should be temporary, but the effect is a bit unsettling. Taxol is also reportedly tougher on hair than Adriamycin. What hair is left on her head is slowly making its way to the pillow, and her eyelashes are just about gone. Much to her chagrin, however, the hair on her legs remains mostly intact. She also experienced quite a bit of intermittent itching. For the second dose she decided to begin taking Dexamethazone, which gave her quite the collection of pre-meds: Kytril for nausea, Benedryl for allergic reactions, Dexamethazone for pain, and Zantac to protect her stomach from the drug soup. Taking the steroid during and after the treatment did seem to boost her appetite and energy level, but it had no apparent effect on the pain. The cycle of Taxol pain and itching, crashing, then G-CSF aching repeated itself following the second dose.

According to her oncologist, the Dexamethazone should have completely suppressed the pain, so the fact that it didn’t was of some concern to him. It was his opinion that the effect was due to both the sheer toxicity of Taxol and the large doses Jess is taking. This really didn’t surprise me. When other medications are spiked into the sodium chloride base, the nurses label the bag with the medication name and the dose. I had noticed several other patients were also getting Taxol, with doses in the 80 to 150 mg range. For comparison, Jess was receiving doses of 370 mg. Her oncologist decided to split the final dose into two applications, each of which was still larger than any other dose I had seen. She received the first half of this last dose on February 17th.

The next day was another day of concern, as a small area of hot, red skin had appeared on her left breast. Off to the doctor again. The initial diagnosis was of a low-grade infection, so they started her on an intravenous antibiotic (Rocephin). Since she didn’t have fever or chills, there was also the possibility that the rash was just a by-product of the Taxol working its deadly cell magic, in which case the antibiotics would just be precautionary. Her doctor traced the outline of the affected area in pen to help determine if it was spreading. By Thursday, the redness had spread down the left side of her chest. Fearing some sort of staph infection, they added a second antibiotic (Vancomycin). She had a slight allergic reaction to the Vancomycin (her skin flushed and itched), which required a quick shot of Benedryl to relieve. Friday, Saturday, Sunday and Monday she received intravenous doses of Benedryl, Rocephin and Vancomycin, as well as the G-CSF/EPO protocol. She submitted samples of stool and urine, but no traces of abnormal bacteria were found. The good news is that the rash had disappeared by Sunday, either by itself or from the antibiotics. The other good news is that the reduced Taxol dose combined with Dexamethazone made for a pain-free weekend. She had some minor twinges Friday evening, but that was it.

The antibiotics took just over two hours to administer each day, and the six straight days of treatment gave me lots of time to play with the puzzles in the waiting room, read all the magazines (again) and work on this Jess-O-Gram. In just a few short months we have become grizzled veterans of the Northwest Cancer Center. From all the daily trips, the car now knows the way to the Center, located just adjacent to Northwest Hospital. Occasionally we take a different route, sometimes out of boredom, sometimes because the standard route runs along two sides of the Evergreen-Washelli cemetery and we feel overwhelmed by the implications of the scenery. Sometimes Jess isn’t ready to go back to the house just yet, and we drive to Sunset Park and stare at the Sound and the Olympic mountain range (on those occasions when the weather allows the vista). We have come to know all the Center doctors, nurses, lab techs and administrative personnel by name, and they have become like an extended family to us. The waiting room is a fascinating study in the dynamics of human interaction. All eyes flash to whoever comes through the entrance. Knowing smiles and nods are sometimes passed from patient to patient, and caregiver to caregiver. Mostly it is an exercise in degree of suffering. The anxious “Oh my god! Am I going to look like that?” stares of the newly diagnosed are returned by the weary “Don’t worry – they tell me it’ll grow back” smiles of the veterans. The ambulatory patients look at the patients with canes and walkers, and suddenly their own situation doesn’t seem quite as bad. A similar thought occurs to those with canes and walkers when they see those in wheelchairs, who in turn look with a limited empathy on those confined to gurneys. The ones on gurneys stare at no one in particular.

Yesterday (2/24) Jess received the second half of her third and final dose of Taxol. A small area of the rash reappeared this morning, but still no fever or chills. She stands at the 2/3 point in her chemotherapy, with the toughest of the three drugs to go. She is learning to endure things she never thought it possible to endure, and your support has been instrumental in the process. Hopefully it won’t be another six weeks before you hear from us again. As usual, recent additions to the distribution list can reply to me here (old email address removed) for “back issues” of Jess-O-Grams. Please distribute these to anyone you think may want to know, or contact me with names and e-mail address to add to the list. Take care…

JESS-O-GRAM #13 (6/2/98)

I have come to believe that there are really only three types of people in the world: Those who put their garbage out on the curb the evening before collection, those who set it out early on the morning of collection, and those who run out when they hear the truck coming. Under normal conditions I endeavor to be a “morning of” person, but lately I’ve been chasing a lot of trucks. I take some small solace in knowing that the garbage actually being picked up overshadows the aggregate importance of the details surrounding its collection.

While El Nino has certainly been wreaking havoc in other parts of the country, Washington has been visited by an early spring after a mild winter. The yard floral parade has marched from crocuses to daffodils to tulips to rhododendrons, and the lawn now expects weekly attention (though, as our neighbors will attest, I routinely fail to meet these particular expectations). It’s nice to talk about good things growing for a change, even (relatively) non-organic things like Operation Clear Cut and even these JOGs (I sent the first JOG to sixteen people – this one will go out to over sixty). In yards, as in life, some not-so-good stuff still grows, though. My annual war on moss in many ways has come to mirror Jess’ struggle with cancer: There is the exasperation of icky stuff growing in beautiful places, the use of toxic chemicals and the endurance of great physical suffering, all followed by worrying about whether or not it will come back. Jess has become suspicious of me, however, since she caught me eyeing her breast with my thatching rake.

Jess received her first dose of Cytoxan on March 3rd. The procedure was old hat: Blood counts, consultation, pre-meds, chemo, portacath flush. The experience was blissfully short compared to the Taxol — about an hour and a half start to finish. Cytoxan carries a significant risk of damage to internal organs (particularly the liver, kidneys and bladder), so it was essential that Jess stay hydrated around the time of each treatment. To help protect her organs by flushing the drug from her body, she had to drink three liters (8/10 of a gallon) of water the day before, the day of, and the day after each treatment. At one point, she swore she could hear herself sloshing around as she walked, and she refused to take another sip.

The rash on her breast and ribcage has been annoyingly persistent. Jess proffered the theory that she was simply Robin Redbreast, the first bird of spring, but the Cancer Center nurses were skeptical. The surest and most welcome sign of spring, however, was the return of hair to her chemo-deforested head. Small white tufts began to appear the week after the first Cytoxan, which of course elicited great rallying cries of “Chia Wife!” from her husband. The tufts then began to fill in the blank spots and darken up to what I called “Dutch bunny brown” (probably only the country kids among you will get that). The speed at which her hair propagated was amazing to watch. There were afternoons when I swore it was longer than when she left in the morning. Her hair has since lightened a bit in color to a sort of…well…taupe. It’s also beginning to get wavy and curly in spots. Changes in both color and texture are very common in hair returning after chemotherapy, so we’ll have to wait and see what the final product will look like. She’s just glad it’s coming back.

Despite predictions from her oncologist and the relayed experiences of others that Cytoxan would be the worst of the three chemotherapy agents, her first dance with the stuff was essentially side-effect free. She was taken off the EPO medication, and received a reduced daily G-CSF dosage. Her WBC counts barely dipped, and she was able to have her second treatment on March 17th. Somewhere in between the first and second Cytoxan doses, the Taxol-induced neuropathy in her fingers and toes stopped. The intermittent rash and some residual numbness and stiffness in her armpit are the only lingering effects of surgery and the first two chemotherapy drugs.

In other news it appears I have developed other maladies related to Jess’ illness. In a session with one of our counselors we were discussing some pretty heavy topics and Jess began to sniffle. From the start of her chemotherapy, I have been carrying the “husband kit”, consisting of a small package of tissue, lip balm and breath mints for getting rid of the post-treatment “chemo mouth”, paper and pencil for jotting down questions and recording answers, and pills of various types. On this particular occasion, I found myself without any tissue (I left them in the car). As Jess began to cry, the counselor and I looked at each other, then suddenly our arms and heads began to flop around and our torsos began to gyrate wildly as we searched frantically for the nearest box of Kleenex. Only when the box was located and placed in front of Jess did our seizures began to subside. In medical circles, this condition is known as helpilepsy, and there is no known cure. While there have been no reported fatalities, helpilepsy has been diagnosed as the root cause of getting very quizzical looks from total strangers. Since this episode, I have had many repeat occurrences, from small fits to full-on helpileptic seizures. Our counselor confided that she had been suffering the effects of helpilepsy ever since her son was diagnosed with Leukemia some twenty years ago.

There is much more to tell (Jess is now undergoing radiation therapy), but this must suffice for now. Best to stop and let everybody catch their collective breath. As usual, recent additions to the distribution list can reply to me here (old email address removed) for “back issues” of Jess-O-Grams. Please distribute these to anyone you think may want to know, or contact me with names and e-mail addresses to add to the list. Take care.

JESS-O-GRAM #14 (8/21/98)

It seems I’ve made a habit out of opening each JOG with some sort of excuse for the delay since the previous one, and I see no reason to break form now. As Jess finished treatment, we experienced a strong desire to just drop it all — to put it all behind us and set about the business of reclaiming our lives. However, many of you have monitored her condition faithfully via these dispatches, and deserve at least the remaining details.

Different types of cancer respond differently to the various treatment options, and radiation was prescribed in Jess’ case specifically to go after any sarcomatus remnants of her cancer. The principle behind radiation treatment is the same as chemotherapy (namely, “kill the bad cells”) except that the treatment is very localized and the collateral damage to adjacent healthy cells is much less drastic. Her radiological oncologist prescribed a six and a half week course of daily treatments, based on her breast tissue characteristics and the type and grade of her tumor. The treatments were administered each weekday (weekends off) and were given at the Northwest Cancer Center where she received her chemotherapy.

The first step in ensuring the radiation would be applied to exactly the same area each time was to take a series of x-rays and CAT scans. These were done to get a three dimensional “map” of her left breast, showing not only physical dimensions, but also the variation in tissue density. The second step was to take a styrofoam impression of the back half of her upper body, from the waist to the top of her head. This form, or cradle as the nurses call it, was used to help immobilize her torso during treatment. To allow the radiation gun (which looked to me like an eight foot tall KitchenAid mixer sans beaters) to be placed in the same orientation relative to the tissue each time, Jess received a series of four permanent tattooed dots, three running down her sternum and one on the left side of her ribcage. Each dot is the size of a mark made with a small felt-tip pen, and was actually administered using genuine India ink and a needle (by one of the radiation technicians, not a biker named “Mad Dog” they keep in the back room expressly for this task). Jess said they were less painful than having her finger lanced for blood samples during chemotherapy. One of the radiation nurses had one done on the back of her hand, which I thought was a good way of helping to dispel patients’ fears about large, disfiguring marks.

Jess began radiation therapy on April 30th. The treatment took place in a large, shielded room where Jess was placed on a table (with her torso in the foam cradle) under the radiation machine. The nurses used her tattoos and a system of laser optics to align the apparatus. The actual administering of the radiation was similar to getting an x-ray at the dentist. They aligned the machine, told you not to move, then left the room. “Hey! If it’s so safe, why are you-all leaving?” Due to the intensity of the radiation, no one else was allowed to stay in the room, which was sealed with a large, vault-like door. The nurses kept in contact with her via an audio/video link. A few blips from the computer console and it was over. Each treatment usually took about fifteen minutes, with alignment taking the majority of the time.

The principal side effect of radiation therapy is a darkening of the skin at the treatment site, similar to a severe sunburn. The area surrounding Jess’ left breast became progressively darker until it reached a deep red-brown color. In some cases, the skin becomes too damaged to continue treatment, but with the use of special creams and moisturizers this didn’t happen to her. The second major side effect of radiation is fatigue, though I wasn’t able to get a completely satisfactory explanation of the physiology behind this. With chemotherapy, the fatigue comes directly from the depleted red blood cell count – impaired ability to get oxygen to the muscles results in the reduced capacity of the muscles to perform work. With radiation, the fatigue apparently comes from the body having to expend energy in healing — carrying off the dead cell waste and repairing the skin. Anybody who’s ever felt sort of sluggish and sick and after sustaining a serious sunburn may be able to identify with this. Another explanation I received was that radiation is often the last phase of cancer treatment, and the sheer duration of the diagnosis/surgery/chemo/radiation cycle begins to take its physical toll on the patient, manifesting itself as fatigue. In any event, Jess developed the habit of taking a nap for an hour or so each day after treatment.

On May 27th, Jess suspended radiation treatment for surgery to remove the portacath that was installed last November. The procedure was performed at the Polyclinic (an outpatient treatment and surgery center associated with Swedish Hospital) by the same surgeon who did the installation and lumpectomy. As a veteran of many childhood ear surgeries I have a patent dislike of hospital waiting rooms, and sitting through Jess’ third operation in six months was very difficult. The procedure was done in the morning, and she was able to come home in the early afternoon and returned to work and radiation therapy the next day. In a slightly macabre tribute to the device’s contribution to her treatment, she plans on using the extracted portacath as a Christmas ornament this year.

The final week of radiation treatments were directed less at the tumor site and more at the scar tissue surrounding the site. These doses, called a scar boost, were prescribed because scar tissue is less able to absorb radiation than normal tissue, and therefore needs an extra zap, or “boost”, to accomplish the same level of tissue saturation. Jess received her final treatment on June 17th.

Last February, I was watching a television sports show that featured, among other things, coverage of a women’s triathlon. As several of the contestants neared the finish line at the end of the marathon portion, one of them collapsed and fell to the ground. Her supporters, including her husband, rushed to her side and tried to help her up, but she waved them off. She struggled to her feet, took about three steps, then her legs buckled and she fell again. Again her husband came to her, but this time he encouraged her not to move. Again she waved him off and rose on uncertain legs. With her short hair hidden under a racing cap, she looked almost bald. Suddenly, I was struck by how similar she looked to many of the cancer patients I had seen in the past months, and to Jess in particular. The physical depletion, the tears, the pain-laced looks she gave her husband that said “I love you, but you can’t help me. I have to do it” — all spoke to me of a woman struggling to draw on strength she wasn’t certain she possessed. I watched spellbound as the woman took several teetering steps, then collapsed again. Somehow, she rose again, and began to move forward with singular determination, only to have her limbs fail her once more. Refusing to yield to her exhausted body, she crawled the last few feet over the finish line, where she dropped completely to the ground and began to sob uncontrollably. The scene was utterly galvanizing. This is the image of Jessica I held for the remainder of her treatment — a woman struggling against enormous physical odds and refusing to give up. Instead of swimming, cycling and running, she had to face surgery, chemotherapy and radiation therapy. Some seven and a half months after diagnosis, she crossed the finish line.

Since finishing treatment, Jess has begun exercising with a group called Team Survivor Northwest. They take long group walks on Monday nights and work out with exercise bikes and free weights at the University of Washington Physical Therapy Center on Wednesday nights. But, as with overexertion during a triathlon, there is a price to be paid for enduring treatment for cancer. The Adriamycin she received during her chemotherapy has a potential long-term side effect of causing heart disease. As a consequence, her doctors advised her not to raise her heart rate into the aerobic zone (i.e. stay below 75% of her maximum heart rate) for six to eight months after her last Adriamycin dose. Her last dose was January 6th, so she has just reached that milestone. It will take until approximately Christmas this year for all the chemotherapy drugs to be flushed from her system. The radiation sunburn has also faded, but she must continue to monitor exposure. This tissue has already been exposed to a lifetime’s worth of high-dose radiation. It can withstand lower dose exposure for future x-rays and mammograms, but additional high-dose would almost certainly lead to new types of cancer. No more topless sunbathing!

Other than the scars from surgery, the most permanent reminder of her experience concerns the swelling and redness on her breast and ribcage. The swelling has since extended to her left arm, and has been diagnosed as a form of lymphedema, or inflammation due to an accumulation of lymph fluid. The lymphatic system is like the body’s sewage system, removing wastes from the body’s cells by circulating a clear fluid called lymph. The clusters of lymph nodes located in the neck, armpits and groin act as processing centers, helping to circulate and cleanse the lymph. Having had nodes removed from her left armpit, Jess has lost a portion of her body’s ability to process the lymph. The lymphatic system is arranged in quadrants, so in Jess the upper left quadrant of her body has been compromised. Essentially the lymph pump and filter in this quadrant now have reduced capacity. As a result, the lymph in excess of what her reduced node cluster can handle actually pools in the surrounding tissue, which is what caused the intermittent swelling and redness. Things like heat, exertion and rapid altitude (pressure) changes also influence the extent of the swelling. The swelling can cause some discomfort, but infection is the real danger. Lymph is rich in protein, offering bacteria a wonderful place to grow if the lymph isn’t circulated and cleansed.

Lymphedema is permanent but treatable condition, with treatment consisting of moving the lymph from the compromised quadrant to one of the other node clusters. In some cases, the nodes and lymph can be “trained” to compensate and automatically redirect the lymphatic flow, but generally the process involves manually relocating the lymph through a series of stretches and massage techniques. Even though lymph typically doesn’t like to cross the so-called median (an imaginary vertical line dividing the body into left and right halves), Jess has had some success in using physical therapy to retrain the lymph to do so. Lymphedema manual drainage massage is a highly specialized field, and though the technique is quite common in Europe it is only beginning to see widespread use in the US. There are actually two different schools and philosophies of massage, the German (“Ve vill march ze lymph from here to here und it vill like it!”) and the French (“ahhy monsieur lymph, why don’t you come over ‘eer and ‘ave a nice croissant, eh?”). Jess has a daily regimen of maintenance exercises she must do to keep the swelling in check, and she now wears a compression sleeve when flying.

The loss of lymph nodes in her left armpit also means the upper left quadrant of her body has reduced infection-fighting capacity. She has to be very careful about injuries to her left arm, particularly cuts and burns. In addition to increasing her general level of caution, she now has to wear gloves while gardening or doing dishes, or working around any other potential sources of infection. Lymphedema management and guarding against infection can become serious quality of life issues for some cancer survivors, but so far Jess is doing quite well.

Despite the scars, tattoos and swelling, life has settled down somewhat. Jess’ hair is now about an inch and quarter long, and remains mostly taupe-colored. It’s also very soft and very curly. Energy-wise she is back to about 80% of her pre-diagnosis level, and is still a big fan of afternoon naps. She is back working full time, and looking forward to participating in the Seattle “Race For The Cure” (a 5K race held nationwide to benefit breast cancer research) on September 13th, where she will wear a pink survivor’s cap. Though her prognosis is good, she is at the greatest statistical risk of recurrence over the next three years. She will have follow-up visits to both her medical and radiological oncologists in September, as well as blood work to look for “tumor indicators”. She will have another mammogram and follow-up with her surgeon in October, then she will have mammograms and blood tests done every six months for the next three years. After that, the checkups will become yearly. Today, she is celebrating her 41st birthday by taking the day off work and attending the grand opening of the new Nordstrom flagship store in downtown Seattle with her mother and a few close friends. Even after all the various therapies she’s been through, retail therapy is one she’s still willing to endure.

That should pretty much bring everybody up to speed — my apologies again for the delay. If any of you are recent additions to the distribution list and are interested in “back issues” of Jess-O-Grams, it’s best to reply to my home e-mail address (old email address removed) since Boeing is going through another “phase” and as a contract engineer my continued employment here is suspect at best. Any openings out there for a soon-to-be-unemployed engineer/writer? As usual, please distribute these to anyone you think may want to know, or contact me with names and e-mail addresses to add to the list. Your thoughts and prayers have been invaluable to us over the past nine months, and we can’t thank you enough. Look for another update sometime in September/October, and take care in the meantime.