PART ONE
1: waking
5 in the hospital lobby The name of the hospital is not mentioned according to the terms of a 2009 settlement that prevents us from naming the parties.
6 rare disease A rare or orphan disease has different definitions in different cultures. In America, it means a disease that afflicts one in 1,500 people; in Europe, one in 2,000. Richard’s rare cancer, at the time of its discovery, afflicted about one in a million people. Global Genes estimates that three hundred million people worldwide have a rare disease. Statistics are available through the National Institutes of Health, Office of Rare Diseases Research.
6 the warrior Boudica Boudica was the queen of a Celtic tribe circa AD 60 who led an uprising against the Roman Empire. Though she was nearly forgotten by the Middle Ages, Shakespeare’s contemporaries resurrected her image, and she has been referenced in songs, plays, poems, books, films, and yes, even video games, since then.
6 pseudomyxoma peritonei (PMP) Although the first case of PMP was diagnosed in 1842, it is still routinely misdiagnosed. Most medical definitions state that PMP is characterized by mucinous ascites resulting from rupture of a mucin-producing neoplasm, typically originating in the appendix. The cancer rarely spreads through the lymph glands or the blood. Everyone untreated dies, usually from bowel obstruction. At the time of Richard’s surgery, the pathology and best treatment were widely debated. An overview of this debate can be found in Eric Nakakura, “Pseudomyxoma Peritonei: More Questions Than Answers,” Journal of Clinical Oncology 30, no. 20 (July 2012): 2429–30, doi: 10.1200/JCO.2012.42.3764.
7 cytoreduction with hyperthermic intraperitoneal chemotherapy (HIPEC) Also called hyperthermic chemoperfusion, this process involves a chemotherapy bath of a chemical solution heated to 107–109 degrees Fahrenheit and delivered into the abdominal cavity, where it penetrates the diseased tissue directly. HIPEC was called the “gold standard” for PMP patients as early as 2009, but in 2003, little data had been collected on the treatment. See Terence C. Chua et al., “Early- and Long-Term Outcome Data of Patients with Pseudomyxoma Peritonei from Appendiceal Origin Treated by a Strategy of Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy,” Journal of Clinical Oncology 30, no. 20 (May 2012): 2449–56, doi: 10.1200/JCO.2011.39.7166.
7 MOAS, for Mother of All Surgeries This term was coined by the spouse of an appendix cancer patient. “Glossary of Terms,” Pseudomyxoma Survivor, http://www.pseudomyxomasurvivor.org/glossary.html.
8 five-year survival rate My numbers here are based on a 1994 study of debulking and systemic/intraperitoneal chemotherapy, one of the few papers available to us at the time: D. B. Gough et al., “Pseudomyxoma Peritonei. Long-Term Patient Survival with an Aggressive Regional Approach,” Annals of Surgery 219, no. 2 (February 1994): 112–19, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1243112/.
Estimates of survival rates in 2003 varied widely, since research was scarce. One report said, “Overall survival at 1 and 3 years was 61% and 33%, respectively. With median follow-up of 52 months, median overall survival was 16 months” (Perry Shen et al., “Factors Predicting Survival after Intraperitoneal Hyperthermic Chemotherapy with Mitomycin C after Cytoreductive Surgery for Patients with Peritoneal Carcinomatosis,” Archives of Surgery 138, no. 1 (January 2003): 26–33, doi: 10.1001/archsurg.138.1.26).
Morbidity rates were also analyzed in Z. Güner et al., “Cytoreductive Surgery and Intraperitoneal Chemotherapy for Pseudomyxoma Peritonei,” International Journal of Colorectal Disease 20, no. 2 (March 2005): 155–60, http://www.ncbi.nlm.nih.gov/pubmed/15503065.
More recently, survival rates have been analyzed as follows: “Favorable results with combined modality treatment have been achieved for patients with benign disease (DPAM) and complete cytoreduction, with 5- and 10-year survival rates of approximately 75%–100% and 68%, respectively. However, patients with malignant disease (PMCA) or intermediate disease (PMCA-I) showed a significantly worse prognosis, with 5- and 10-year survival rates, respectively, of 50% and 21% for PMCA-I and 14% and 3% for PMCA. Patients with DPAM seem to benefit most from this approach. However, it remains controversial whether patients with PMCA benefit from this aggressive treatment. Moreover, completeness of cytoreduction has additional prognostic value and is strongly associated with extent of disease. Patients with extensive PMP are prone to incomplete cytoreduction and a complicated recovery.” (Thomas Winder and Heinz-Josef Lenz, “Mucinous Adenocarcinomas with Intra-Abdominal Dessemination: A Review of Current Therapy,” Oncologist 15, no. 8 (July 2010): 836–44, doi: 10.1634/theoncologist.2010-0052.)
9 Richard’s physical therapy company Richard worked for Physiotherapy Associates, owned in 2003 by Stryker Corporation, a company that specializes in medical equipment.
10 send us books At the top of the list of books Richard thought he’d read at the hospital was The Odyssey.
11 Richard has either A concise evaluation of the factors related to the pathology of DPAM and PMCA, and the confusion around their biology and prognosis, can be found in Nakakura, “Pseudomyxoma Peritonei.”
12 By 7:20, his blood pressure The timing of events in the ICU is confirmed by the hospital record and by subsequent interviews with nurses and resident interns on staff that evening.
2: compatriots
16 Richard lived on Blue Mountain Jozo Weider founded Blue Mountain in 1941, and the Weider family kept primary ownership until 2014, when they sold their shares to Intrawest. The 1970s were a period of major expansion for the ski resort. Blue Mountain is now the third busiest ski resort in Canada.
19 heart beating through my Wonderbra Wonderbra was developed in Canada by the Canadian Lady Corset Company. Though the popular push-up style wouldn’t be introduced in the United States until 1994, Canadian women have been donning its underwired perfection since 1961.
3: leaving
28 “He’s coding,” Christie says “Coding” is medical slang for the use of a crash cart or code cart during a cardiopulmonary arrest or other emergency requiring resuscitation and a coordinated all-hands-on-deck response on the part of medical personnel. The Concise Dictionary of Modern Medicine by J.C. Segen.
4: quilt
29 walked the Bruce Trail This trail, which follows the edge of the Niagara Escarpment, extends for over five hundred miles from Tobermory to Queenston, Ontario, including the areas around Blue Mountain, Georgian Bay, and Lake Ontario. See http://brucetrail.org/.
31 graduated from high school Ontario high school students choosing to enter college typically attended high school for five years. The final year, grade thirteen, represented a preparatory year before university. This practice was abolished by the province in 2003, to save money.
32 a hundred thousand fans at Canada Jam Canada Jam was an eighteen-hour concert held on August 26, 1978, in Mosport Park, east of Toronto. It was the biggest music event in the country’s history at that time, attracting 110,000 visitors and featuring the Doobie Brothers, Kansas, the Commodores, and Triumph.
38 a weekend retreat called Engaged Encounter The archdiocese required anyone getting married in the Catholic Church to either take a program of instruction from a priest or attend a weekend retreat. We chose the latter, outside Toronto, on the grounds of the Sisters of the Good Shepherd.
5: cairn
48 the five-day protocol of heated chemotherapy For those wanting a greater understanding of HIPEC following cytoreductive surgery, a graphic video presentation by Dr. Temple at University of Calgary’s Faculty of Medicine is available here: https://www.youtube.com/watch?v=U2FJpxIZ5yo#t=20.
The Journal of Clinical Oncology published a well-cited study of early medical research on the efficacy of HIPEC: Tristan D. Yan et al., “Systematic Review on the Efficacy of Cytoreductive Surgery Combined with Perioperative Intraperitoneal Chemotherapy for Peritoneal Carcinomatosis from Colorectal Carcinoma,” Journal of Clinical Oncology 24, no. 24 (August 2006): 4011–19, doi: 10.1200/JCO.2006.07.1142.
The case for identifying the patients who might experience long-term benefits, and what the criteria for selection might be, is made in F. Mohamed et al., “A New Standard of Care for the Management of Peritoneal Surface Malignancy,” Current Oncology 18, no. 2 (April 2011): 84–96, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070715/.
A well-cited study of 2,298 patients treated with HIPEC is Chua et al., “Early- and Long-Term Outcome Data of Patients with Pseudomyxoma Peritonei.”
More recent research can be found in A. C. Lord et al., “Recurrence and Outcome after Complete Tumour Removal and Hyperthermic Intraperitoneal Chemotherapy in 512 Patients with Pseudomyxoma Peritonei from Perforated Appendiceal Mucinous Tumours,” European Journal of Surgical Oncology (September 2014): ii, doi: 10.1016/j.ejso.2014.08.476. The primary conclusion is that “approximately one in four patients develops recurrence after complete CRS and HIPEC for PMP of appendiceal origin. Selected patients can undergo salvage surgery with good outcomes.”
A New York Times article on the impact of HIPEC on PMP and other cancers caused a debate within the PMP community, many of whom saw the piece as unnecessarily broad in treating all digestive cancers as one: Andrew Pollack, “Hot Chemotherapy Bath: Patients See Hope, Critics Hold Doubts,” New York Times, August 11, 2011, http://www.nytimes.com/2011/08/12/business/heated-chemotherapy-bath-may-be-only-hope-for-some-cancer-patients.html?pagewanted=all&_r=0.
48 PMP happens to one in a million At the time of Richard’s diagnosis, PMP was said to occur in one in a million people every year, though the numbers appear to be rising to two in a million a year. This may be due to greater knowledge and proper diagnosis of the rare cancer.
These figures can be confirmed in an early study: A. Mukherjee et al., “Pseudomyxoma Peritonei Usually Originates from the Appendix: A Review of the Evidence,” European Journal of Gynaelogical Oncology 25, no. 4 (2004): 411–14, http://www.ncbi.nlm.nih.gov/pubmed/15285293.
And in a more recent one: N. J. Carr, “Current Concepts in Pseudomyxoma Peritonei,” Annales de Pathologie 34, no. 1 (February 2014): 9–13, doi: 10.1016/j.annpat.2014.01.011.
The statistic of one thousand cases diagnosed in the United States every year comes from PMP Pals, an advocacy organization.
56 The dominant prognostic factor PMP, as a rare and relatively unknown disease, has a variety of misconceptions attached to it. The pathology of PMP is one of the most troublesome aspects investigated by the medical community. Thus, misdiagnosis is one of the primary issues, with doctors failing to recognize the mucin as having originated from the appendix, erroneously attributing it to the ovaries in females, or calling it colon cancer, or providing no diagnosis. Likewise, many label PMP ‘benign,’ a terminology that does not communicate the seriousness of the cancer. PMP rarely spreads via the lymphatic system or the bloodstream.
One landmark research paper differentiated the pathology of PMP: B. M. Ronnett, et al., “Immunohistochemical Evidence Supporting the Appendiceal Origin of Pseudomyxoma Peritonei in Women,” International Journal of Gynecologic Pathology 16, no. 1 (1997): 1–9, http://www.ncbi.nlm.nih.gov/pubmed/8986525. It stated a case for specifying the type of mucin-producing tumor, specifically identifying that low-grade disease has different mutations from those of high-grade disease. Did patients have a disseminated peritoneal adenomucinosis (DPAM, a low-grade mucinous adenocarcinoma) or a peritoneal mucinous carcinomatosis (PMCA, a high-grade mucinous adenocarcinoma), or some kind of cancer in between those varieties? The authors also clarified misconceptions related to PMP being attributed to ovarian cancer. They argued that only low-grade DPAM should be called PMP, whereas others used the term to describe the accumulation of mucin caused by either low- or high-grade disease.
Recent studies are adept in correlating the type of malignancy, surgical outcomes, and survival rates. See P. Dartigues et al., “Peritoneal Pseudomyxoma: An Overview Emphasizing Pathological Assessment and Therapeutic Strategies,” Annales de Pathologie 34, no. 1 (February 2014): 14–25, doi: 10.1016/j.annpat.2014.01.012.
51 an anoxic incident Cerebral anoxia is a complete interruption of blood supply to the brain. Hypoxia is a partial interruption of blood flow to the brain. More information on hypoxic and anoxic brain injury can be found on the website of the Family Caregiver Alliance: https://www.caregiver.org/hypoxic-anoxic-brain-injury.
6: scout
56 the Serious Moonlight tour The set list from David Bowie’s performance in Toronto on September 3, 1983, included “Modern Love” as an encore, as can be seen on Setlist.fm: http://www.setlist.fm/setlist/david-bowie/1983/cne-stadium-toronto-on-canada-4bd0ebfa.html.
62 I climbed from Lake O’Hara Lake O’Hara is located in Yoho National Park, near Lake Louise, Alberta, Canada. For more information visit Parks Canada: http://www.pc.gc.ca/eng/pn-np/bc/yoho/natcul/ohara/sentiers-trails.aspx.
7: serum
63 to prevent blood clots from forming Pulmonary embolism was a serious risk for Richard, who had undergone two surgeries and was immobile for a few days. More information on pulmonary embolism can be found on the website of Johns Hopkins Medicine: http://www.hopkinsmedicine.org/healthlibrary/conditions/respiratory_disorders/pulmonary_embolism_85,P01308/.
66 a chemotherapy called 5FU, or fluorouracil At the time of Richard’s surgery, 5FU, or fluorouracil, was commonly combined with mitomycin C in intraoperative HIPEC, followed by five days of early postoperative intraperitoneal chemotherapy (EPIC) treatment for peritoneal carcinomatosis from appendiceal and other gastrointestinal malignancies. See Tristan D. Yan et al., “Perioperative Intraperitoneal Chemotherapy for Peritoneal Surface Malignancy,” Journal of Translational Medicine 4 (April 2006): 17, doi: 10.1186/1479-5876-4-17.
The University of Calgary published an eleven-year study of PMP patients, in which they argue that HIPEC combined with EPIC results in unnecessary complications: Y. J. McConnell et al., “HIPEC+EPIC versus HIPEC-Alone: Differences in Major Complications Following Cytoreduction Surgery for Peritoneal Malignancy,” Journal of Surgical Oncology 107, no. 6 (May 2013): 591–6, doi: 10.1002/jso.23276.
68 a letter to friends, written from the hospital The letter was written on October 1, 2003.
70 about ten thousand generations ago This is an estimate I arrived at with the help of a Seattle Public Library researcher. Though our data selection was somewhat arbitrary, we used recent evidence of Homo sapiens appearing two hundred thousand years ago and assumed the average childbearing age to be twenty; this would add up to around ten thousand generations. (One of the reasons Seattle is an incredible place to live is that it provides research assistance as a free service to the public, through the library. Online help is available from librarians around the country twenty-four hours a day, seven days a week, 365 days a year. Librarians at the Seattle Public Library are usually available from 9:00 AM to 6:00 PM seven days a week.)
72 twelve motor skills tests in five minutes The hospital neurologist likely used a mini cognitive evaluation of ten verbal questions and twelve motor skills tests, the same brief tests commonly used to predict dementia in patients. According to one study: “While the benefits of the statistical probability–calculation approach are clear (maximizing detection while minimizing unnecessary investigation of healthy people), several drawbacks are also apparent. Many screening tests overemphasize memory dysfunction, the hallmark of Alzheimer’s disease, to the neglect of other domains such as language, praxis or executive function” (Breda Cullen et al., “A Review of Screening Tests for Cognitive Impairment,” Journal of Neurology, Neurosurgery & Psychiatry 78, no. 8 (August 2007): 790–99, doi: 10.1136/jnnp.2006.095414.)
79 a terrific job working for the Whyte Museum The Whyte Museum of the Canadian Rockies is an archive, art gallery, and educational facility oriented to mountain art and culture, especially that of the Canadian Rockies around Banff, Alberta.
85 eligible for the subsidized food program In the 1990s, nearly 50 percent of Memphis City schools had students on the free/reduced-price lunch program, and those numbers are about the same today. Poverty is so prevalent that the school district, under a federal program, now also serves breakfast and supper to children who would otherwise go hungry. (From the Kids Count Data Center, a project of the Annie E. Casey Foundation: http://datacenter.kidscount.org/data/Tables/2979-free-
reduced-price-school-lunchprogram.)
9: shattered
92 The first soldiers On October 16, 2002, a year prior to the day of our return home, President Bush had initiated the call to war in Iraq.
97 We need to get someone to clarify Later, brain injury specialists would argue for a need to differentiate between traumatic brain injury (TBI) and anoxic insult, and a condition they would term hypoxic-ischemic injury (HII). The reason for the change in terminology was to suggest the severity of the injury and its most appropriate treatment. David B. Arciniegas, president of the International Brain Injury Association, argued for the diagnostic term HII in 2010. See Arciniegas, “Hypoxic-Ischemic Brain Injury,” International Brain Injury Association, December 10, 2012, http://www.internationalbrain.org/articles/hypoxicischemic-brain-injury/.
100 Mild to moderate brain injuries Mild brain injury describes the kind of injury sustained, not the impact of that injury on the patient’s life. A traumatic brain injury (TBI), is defined as an alteration in brain function caused by an external force while an acquired brain injury (ABI) is an injury to the brain caused by stroke, drowning, seizure disorders, electric shock, substance abuse, tumor, infectious disease, toxic exposure or oxygen deprivation (Hypoxia/anoxia). ). The annual incidence of TBI is 1,700,000 while the annual incidence of ABI is 917,000, according to the Brain Injury Association of America. http://www.biausa.org.
TBI including all levels of severity, is a major cause of death and lifelong disability in the United States. Each year, an estimated 1.5 million Americans sustain a TBI, fifty thousand die from these injuries, and eighty to ninety thousand experience the onset of long-term disability. An estimated 5.3 million Americans live with a permanent TBI-related disability today. Information from the National Center for Injury Prevention and Control, Report to Congress on Mild Traumatic Brain Injury in the United States: Steps to Prevent a Serious Public Health Problem (Atlanta, GA: Centers for Disease Control and Prevention, 2003), http://www.cdc.gov/ncipc/pub-res/mtbi/mtbireport.pdf.
10: sobering
104 We began therapy The therapeutic work described in this chapter was done with a Gottman therapist. John Gottman is a University of Washington researcher renowned for his work on marital stability and divorce prediction. For more information visit the Gottman Institute, http://www.gottman.com/.
111 Called a debulking Debulking surgery is seen today as beneficial more for palliative care, but in 2000, very few doctors knew any other treatment for PMP. Debulking surgery is not performed with curative intent, while cytoreductive surgery is. See H. Andréasson et al., “Outcome Differences between Debulking Surgery and Cytoreductive Surgery in Patients with Pseudomyxoma Peritonei,” European Journal of Surgical Oncology 38, no. 3 (October 2012): 962–8, doi: 10.1016/j.ejso.2012.07.009.
112 The morbidity rate The doctor who performed Richard’s first surgery was likely referring to the rate of recurrence among those undergoing cytoreductive surgery and HIPEC. Tumor progression rates were high in 1994, as documented in Gough et al., “Pseudomyxoma Peritonei,” Annals of Surgery.
Some doctors think the primary factor contributing to patients’ recovery isn’t HIPEC but instead the combination of good surgeons with well-chosen patients. An overview of the differences in opinion about how to treat PMP can be found in Charlotte Bath, “‘Hot Chemotherapy’ Generates Heated Debate about Its Use with Cytoreductive Surgery to Manage Peritoneal Metastases,” ASCO Post 2, no. 15 (October 2011), http://www.ascopost.com/issues/october-15-2011/hot-chemotherapy-generates-heated-debate-about-its-use-with-cytoreductive-surgery-to-manage-peritoneal-metastases.aspx.
Research on morbidity and mortality of HIPEC around the time of Richard’s surgery was scarce. Among the doctors tracking patients between 1995 and 2003, one team placed morbidity at 34 percent, as reported in U. Schmidt et al., “Perioperative Morbidity and Quality of Life in Long-Term Survivors Following Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy,” European Journal of Surgical Oncology 31 (2005), doi: 10.1016/j.ejso.2004.09.011.
part two
11: servant
122 group of Tibetan Buddhist monks We would later learn of the controversy surrounding the Bowers Museum exhibit and the sand mandala constructed by the monks to celebrate its launch. See Daniel Yi, “Tibetan Exhibit Is More Political Artifice Than Art, Protesters Say,” Los Angeles Times, February 22, 2004, http://articles.latimes.com/2004/feb/22/local/me-octibet22.
122 grains of sand into a mandala The monks built the mandala to honor victims of fire, and then later took the sand to the ocean to release their suffering.
122 send the lama Information on the lama can be found in documents about the monks’ eighteen-month tour of the United States in 2003. Lharampa Geshe Ngawang Lungtok was the senior teacher at Garden Shartse monastery. See the websites of Tara House Meditation Center (http://www.tarahouse.org/monks.html#monks) and Gaden Shartse Lhopa Khangtsen (http://gadenlhopa.org/).
12: waiting
132 I finally read the abstracts Perry Shen et al., “Factors Predicting Survival after Intraperitoneal Hyperthermic Chemotherapy with Mitomycin C after Cytoreductive Surgery for Patients with Peritoneal Carcinomatosis,” Archives of Surgery 138, no. 1 (January 2003): 26–33, doi: 10.1001/archsurg.138.1.26; R. P. McQuellon et al., “Quality of Life after Intraperitoneal Hyperthermic Chemotherapy (IPHC) for Peritoneal Carcinomatosis,” European Journal of Surgical Oncology 27, no. 1 (February 2001): 65–73, http://www.ncbi.nlm.nih.gov/pubmed/11237495.
132 Chemotherapy with Mitomycin C Mitomycin has been approved for use by the FDA since 1995; however, its use in HIPEC was often denied by insurance providers because the protocol was not approved. Although at the time of Richard’s surgery, the evidence in favor of cytoreductive surgery and HIPEC as a “gold standard” of treatment was not established, several researchers would later state a compelling case to standardize its use. One, Laurie Todd, a PMP survivor herself, makes her argument in Chapter 18 of The Sample Appeal: More Insurance Warrior Wisdom, excerpted on the website of the Carcinoid Cancer Foundation, 2010: http://www.carcinoid.org/content/excerpt-18-experimental-seize-their-weapons.
In 2006, the perception of HIPEC was dramatically altered with the publication of a consensus statement by a group of seventy-five physicians: J. Esquivel et al., “Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy in the Management of Peritoneal Surface Malignancies of Colonic Origin: A Consensus Statement,” Annals of Surgical Oncology (2006), doi: 10.1245/s10434-006-9185-7.
135 who specializes in Brain Gym Brain Gym is a program of movements, exercises, and activities developed to assist children with learning challenges. See Josie M. Sifft and G. C. K. Khalsa, “Effect of Educational Kinesiology upon Simple Response Times and Choice Response Times,” Perceptual and Motor Skills 73, no. 3 (1991): 1011–1015, doi: 10.2466/pms.1991.73.3.1011.
141 According to a 2011 article “The cost of the surgery and HIPEC, including hospitalization, ranges from $20,000 to more than $100,000, doctors said. While Medicare and insurers generally pay for the operation, the heated treatment may not be covered. But doctors added it may be if it is described merely as chemotherapy.” From Pollack, “Hot Chemotherapy Bath,” New York Times.
142 Speech and Language Evaluation Providence Speech and Hearing Center, Orange, California, report dated February 16, 2004.
13: virgin
153 “I don’t think so,” Possibly Richard forgot his sexual history because he had difficulties with both long-term and short-term memory, a rarity. There’s no medical information that we found to verify. We have our own experience. Yet sexual changes after traumatic brain injury are common. See Angelle M. Sander et al., Sexual Functioning and Satisfaction after Traumatic Brain Injury: An Educational Manual (Houston, TX: Baylor College of Medicine, 2011), http://www.tbicommunity.org/resources/publications/sexual_functioning_after_tbi.pdf.
14: mysterium
156 First up: the entire soliloquy The Oxford Shakespeare: Hamlet, ed. G.R. Hibbard (Oxford: Oxford University Press, 1987), Act II, Scene 2.
157 out pops the announcer The Adventures of Superman monologue was from the George Reeves–era television series, in black-and-white and color, which originally aired from 1952–58 and was syndicated during Richard’s childhood.
164 to get in to see Dr. L Dr. David M. Lechuga, director, Neurobehavioral Clinical and Counseling Center, Lake Forest, California.
165 three days of tests An explanation of what’s in a neuropsychological evaluation and why it’s used for brain injury is available in Brenda Kosaka, “Neuropsychological Assessment in Mild Traumatic Brain Injury: A Clinical Overview,” British Columbia Medical Journal 48, no. 9 (November 2006): 447–52, http://www.bcmj.org/article/neuropsychological-assessment-mild-traumatic-brain-injury-clinical-overview.
15: watershed
174 To help you create compensatory strategies Brain injury survivors use a range of compensatory strategies to cope with daily life, from memory logs, weekly planners, and task lists to recording devices, mobile phones, and computer devices. Richard first used Post-it notes and a printed weekly planner. He progressed to a PalmPilot and then, later, when they were introduced, to an iPhone. Survivors must learn to manage fatigue, monitor their attention and concentration, process information, track their executive functioning, and work on their social skills.
177 A railroad worker An article by Malcolm Macmillan informed my understanding of aspects of Gage’s story: Macmillan, “Phineas Gage: Unravelling the Myth,” Psychologist 21, no. 9 (September 2008): 828–31, http://thepsychologist.bps.org.uk/volume-21/edition-9/phineas-gage-unravelling-myth.
180 Memory is reconstitutive Priscilla Long, “Remembering Abraham Lincoln,” American Scholar, May 16, 2012, http://theamericanscholar.org/remembering-abraham-lincoln/.
16: pathless
189 Pauline Boss Boss’s work helped me understand ambiguous loss, both the range and scope of the grief in such a circumstance. We were in what Boss calls Type Two, the kind characterized by physical presence and psychological absence, which can occur with addictions, dementia, depression. Type One is characterized by psychological presence and physical absence, which can be brought about by war, genocide, natural disasters, even adoption. See Boss, Ambiguous Loss: Learning to Live with Unresolved Grief (Cambridge: Harvard University Press, 2000). See also http://www.ambiguousloss.com.
Only recently has there been more significant study on relationships after brain injury. Ambiguous loss is a primary area of inquiry. See Emilie Godwin, Brittney Chappell, and Jeffrey Kreutzer, “Relationships after TBI: A Grounded Research Study,” Brain Injury 28, no. 4 (April 2014): 398–413, doi: 10.3109/02699052.2014.880514.
193 Nicholl Fellowship competition In 2003, I placed in the quarterfinals of the Nicholl Fellowship, which, at that time, according to director Greg Beal, represented the top 5 percent of entries. This competition is overseen by the Academy Awards® and sponsored by Don and Gee Nicholl.
196 Mr. Nace works with his sons and his wife The Paulson & Nace firm practices in four states. More information about them can be found on their website, http://paulsonandnace.com.
201 bed-and-breakfast where Allen Ginsberg slept Ginsberg is said to have rested at Hotel Bohème, in the North Beach neighborhood of San Francisco.
17: pleasure
210 We seek the legendary Brocéliande In Arthurian legend, the Brocéliande is the forest where the Lady of the Lake supposedly kept Merlin. It’s fictional, but is also said to be located southwest of Rennes, in the Paimpont forest, which still receives visitors to a tree where people hang requests and blessings addressed to Merlin. The forest was thirty minutes from our temporary home in Josselin.
18: friend
225 be creative about ways in which you can access information In Richard’s rehabilitation, we focused primarily on working memory, short-term memory, and the executive and attention control required for its proper functioning. Attention is not only the ability to focus but also the ability to ignore sensory stimulation that prevents concentration. A poor working memory also prevents the acquisition of new information that would develop executive skills to enhance judgment. More recent research on these factors can be found in Keisuke Fukuda and Edward K. Vogel “Human Variation in Overriding Attentional Capture,” Journal of Neuroscience 29, no. 27 (July 2009): 8726–33, doi: 10.1523/JNEUROSCI.2145-09.2009.
Richard used a variety of assistive technologies over the course of his rehabilitation from brain injury, including a PalmPilot, timers, iPhones, GPS devices, voice recordings, and written forms to guide his retrieval of patient information. The National Resource Center for Traumatic Brain Injury has more information at http://www.tbinrc.com/cognitive-rehabilitation-and-assistive-technology-resources.
229 the Sufis in the Canadian Rockies The Sufi Movement of Canada is not affiliated with any religion but is instead devoted to the ideals of love, harmony, and beauty as expressed by the philosopher Hazrat Inayat Khan. In the late twentieth century, they held retreats at Lake O’Hara, a UNESCO World Heritage wilderness site, high in the Canadian Rockies.
232 brain scientists like Michael Gazzaniga Dr. Gazzaniga is a leading researcher in cognitive neuroscience; his notion of a “fictional self” has influenced my understanding of how we construct our narratives. He says that memory is self-serving and unreliable; while the right brain “regurgitates” a remembered experience, the interpreter, located in the left brain, “remembers the gist of the story line and fills in the details by using logic, not real memories.” See Gazzaniga, The Ethical Brain: The Science of Our Moral Dilemmas (New York: HarperCollins, 2006) and The Mind’s Past (Berkeley and Los Angeles: University of California Press, 2000). An overview of Gazzaniga’s work is available in Cathy Gere, “Hemispheric Disturbances: On Michael Gazzaniga,” The Nation, December 5, 2011, http://www.thenation.com/article/164646/hemispheric-disturbances-michael-gazzaniga.
19: heat
242 marital strategist John Gottman’s parlance Renowned for his work on marital stability and divorce prediction, John Gottman has conducted breakthrough research with thousands of couples over the past forty years. Gottman is the founder of the Love Lab at University of Washington and, with Dr. Julie Gottman, the Gottman Institute. For more information visit http://www.gottman.com/.
242 sex columnist Dan Savage Savage writes the internationally syndicated relationship and sex advice column Savage Love. He is the author of several books and, with his husband, Terry Miller, the founder of the It Gets Better project.
243 Babeland Claire Cavanah and Rachel Venning opened the first Babeland store in 1993 in response to the lack of women-friendly sex shops in Seattle. Babeland has a vital sexual education program and community.
20: lover
261 We read Sex at Dawn This book is about the evolution of monogamy in humans. Christopher Ryan and Cacilda Jethá, Sex at Dawn: How We Mate, Why We Stray, and What It Means for Modern Relationships (New York: HarperCollins, 2010).
262 Married people, regardless of gender Infidelity statistics come from Helen E. Fisher, “Serial monogamy and clandestine adultery: evolution and consequences of the dual human reproductive strategy,” Applied Evolutionary Psychology, ed: S. Craig Roberts (Oxford: Oxford University Press, 2012), 94.
262 Still, open marriages Open marriage statistics are from Stephanie Pappas, “5 Myths about Polyamory Debunked,” Live Science, February 14, 2014, http://www.livescience.com/27128-polyamory-myths-debunked.html.
271 Dan Savage uses the term monogamish This concept is covered well in Mark Oppenheimer, “Married, with Infidelities,” New York Times, June 30, 2011, http://www.nytimes.com/2011/07/03/magazine/infidelity-will-keep-us-together.html?pagewanted=all.
278 the cultural filter of an ironic view Both David Foster Wallace, in his essay “E Unibus Pluram: Television and U.S. Fiction,” and Adam Kelly, in his essay “David Foster Wallace and the New Sincerity in American Fiction,” offer serious questions about the role of sincerity and authenticity in an increasingly self-conscious culture. Wallace, “E Unibus Pluram,” Review of Contemporary Fiction 13, no. 2 (Summer 1993): 151–94; Kelly, “David Foster Wallace and the New Sincerity in American Fiction,” Consider David Foster Wallace: Critical Essays, ed. David Hering (Los Angeles and Austin: Sideshow Media Group Press, 2010): 131–46.
21: wondering
282 Still, I’ve read “The Median Stephen Jay Gould, “The Median Isn’t the Message,” Discover 6 (June 1985): 40–42, http://www.cancerguide.org/median_not_msg.html.
283 Richard’s tests give us All of this data is from a report generated by the University of Washington Medical Center’s Brain Injury Rehabilitation Program.
283 an interview with each of us by Dr. P Dr. Mary Pepping, director of the University of Washington Medical Center’s Neuropsychology Testing Service and outpatient Neuro-Rehabilitation Program until 2013.
297 the brain-injured enter a liminal state Liminality is a fascinating way to view the brain-injured and their caregivers. For more, see Suzanne Gibbons, Alyson Ross, and Margaret Bevans, “Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review,” Research in Nursing and Health 37, no. 5 (October 2014): 423–36, doi: 10.1002/nur.21622.
297 neither “me” nor “not me.” But what theorists think identity is—all of the subjective processes by which they talk about the self, including the tendency to be biologically dominant in strategies—informs the therapy for patients with TBI. See David Segal, “Exploring the Importance of Identity Following Acquired Brain Injury: A Review of the Literature,” International Journal of Child, Youth & Family Studies 1, no. 3/4 (2010): 293–314, http://journals.uvic.ca/index.php/ijcyfs/article/view/2093/738.
297 We learn from our research The Medical Malpractice Myth by Tom Baker (Chicago: University of Chicago Press, 2007), like the brilliant documentary Hot Coffee (dir. Susan Saladoff, 2011), provides a stunning dismantling of the rationale for tort reform. Baker, director of the Insurance Law Center, shows that the real cause of the rise in malpractice is “too much malpractice, not too much litigation.” Though I didn’t come to this book until after we won our case, I had to research malpractice mostly as a way to deal with the shame of fighting the medical system. I didn’t understand that corporate health care wants patients to remain guilty and fearful. Corporate health care profits from a culture of hero-worship of doctors and unquestioning compliance among the families of patients. Even if their doctor or hospital made a mistake.
Recent reporting on tort reform includes Michael Hiltzik, “New Study Shows That the Savings from ‘Tort Reform’ Are Mythical,” Los Angeles Times, September 20, 2014, http://www.latimes.com/business/hiltzik/la-fi-mh-another-study-shows-why-tort-reform-20140919-column.html.
304 No one knows the cancer’s cause. There is initial research about the potential link between appendix cancer and geographic proximity to nuclear waste in the United States. Cancer forums identifying PMP patients in several investigations include an unusual cluster among people who have lived in North St. Louis County. The CDC is investigating this grouping. More information about this group can be found at Coldwater Creek Facts: http://www.coldwatercreekfacts.com/.
We would not know about this connection until ten years after Richard’s diagnosis: Richard’s father worked for the Canadian navy, in its nuclear engineering division, from the time that Richard was born until his parents’ divorce when he was three years old.
310 the world’s largest act of faith The Kumbh Mela is a massive Hindu pilgrimage that can attract one hundred million people. It is held every third year in one of four places: Haridwar, Allahabad, Nashik, and Ujjain, along the Ganges in India.
Further Study
PMP Research Foundation, with links to research they’ve funded for a decade:
http://www.pmpcure.org/
Pseudomyxoma Survivor, a UK-based charity:
http://www.pseudomyxomasurvivor.org/
PMP Awareness Organization:
http://www.pmpawareness.org/
PMP Appendix Cancer Support Group, a Facebook group for caregivers and survivors. Membership is by invitation:
https://www.facebook.com/groups/PMPAppendixCancerSupportGroup/
Centers for Disease Control and Prevention, information on traumatic brain injury:
http://www.cdc.gov/traumaticbraininjury/
Brain Trauma Foundation:
Brain Injury Association of America:
http://www.biausa.org/
Brain Injury Association of Canada:
http://biac-aclc.ca/