waiting
WHILE WE WAIT for medical confirmation of his brain injury, we go on easy walks in the Laguna Hills, after which Richard takes long naps. Every day he reads his anatomy and physiology texts, hoping to hold some of the information from the day before. Dylan comes home from school and sings to him. Joshua calls and tells him stories about his DJ gigs, or what he’s studying in college. Richard listens, says a word or two. What’s going on in your life? I write on a pad we keep bedside, and I hold it up. My husband recites the words back to his child. He can’t remember what people care about, why they open their mouths to speak. Unless he does. He can’t remember having been with us, or having heard what we said. Unless he happens to. But he does know how to sleep. Two naps a day and one twelve-hour stretch each night.
While he’s sleeping, I read the surgical files. Perhaps there’s something I missed, some clue as to why he can’t remember his life. We’ve been focused on the cancer, for essential reasons: the probability of his survival without the removal of the cancer was zero percent. Cytoreduction surgery is experimental. Few surgeons perform peritonectomy procedures. The heated chemotherapy protocol is not FDA-approved. Could these procedures be causing brain function problems? If so, then perhaps the medical research might provide a clue.
Richard’s former crisp, block-like handwriting stares back from our personal files. (His handwriting is now slanted and shaky, as if he must start over after every gesture.) There are notes from presurgical interviews he did with several surgeons and their business managers, survival statistics, tumor-marker data, lists of postoperative effects. As a well-respected physical therapist, he had access to a number of doctors for advice and support, as well as a complete understanding of how to do medical research. His training in kinesiology, physiology, and anatomy gave him a language that placed him as a colleague to the doctors and their staff. Richard’s extraordinary intellect gave him the confidence of a doctor, and he projected that to everyone he met, but especially to the medical community with whom he worked every day. I finally read the abstracts he placed in the file prior to our visit to the cancer hospital: “Factors Predicting Survival after Intraperitoneal Hyperthermic Chemotherapy with Mitomycin C after Cytoreductive Surgery for Patients with Peritoneal Carcinomatosis,” and “Quality of Life after Intraperitoneal Hyperthermic Chemotherapy (IPHC) for Peritoneal Carcinomatosis.”
Before the surgery, I was removed from the medical analysis, wanting to focus instead on supporting him emotionally, offering nutritional support and suggestions of ways to prepare for surgery. He allowed me to shift our diet, to organize the family support, to have prayers said by people all over the world. But I didn’t have access to two critical areas: extensive research on the hospital, the surgeon, and their practices; and what he’d negotiated with his employer about his time in recuperation. Now, Richard has no recall of any of that information. I kept myself at a distance from the research, a denial I now see as a kind of rebellion against making cancer my friend. The papers he placed in these files, and my own meetings with his doctors, are my only clues. While Richard sleeps, I sleuth.
I sit on our purple couch, in our tiny apartment in Laguna Beach, and I read the report from the hospital, the description of the procedure, and my notes in my journals. Midline abdominal incision including the entire xiphoid bone. Excision of tumor from the abdominal wall. Large volume of tumor beneath the right and left diaphragm. Pelvis with moderate tumor but larger amount of mucus ascites (those deadly culprits). The entire left quadrant, including the omentum and the area surrounding the spleen, covered by tumor. Lesser tumor growths in the bowel. Tricky bowel loops adhered to his former surgical incision. The surgeons stripped away the mucus tumor between the liver and the diaphragm. Then the gallbladder, like the spleen before it, was removed. The surgeon writes: Now painstakingly we skeletonized the distal 50% of the pancreas. Even though I don’t even know what this statement means, it makes me want to drink a large whiskey, straight up.
The tumor was removed from the liver, the pelvis, the colon. Ten inches of the pelvic colon were “sacrificed,” with hopes that the remaining colon would eventually bond and keep Richard from having to wear a colostomy pouch. Biopsies. Sutures. Bleeding points. Delicate avoidance of the vas deferens and testicular arteries (for which we will be ever grateful some months hence).
All the cancer that the eye could see was scraped, stripped, peeled, removed, ligated, incised, burned, electroevaporated. The first surgical data shows no report of the bleeding that was quietly happening near his stomach; that comes in the second surgical analysis. There is no medical data here that supports a theory of “chemo brain,” since the protocol for Richard’s treatment was not systemic chemotherapy but a localized chemotherapy delivered into the abdominal cavity in surgery and a five-day postsurgical wash. These chemicals didn’t appear to permeate the brain. Still, there are other common reasons for memory loss after these surgeries: post-op malnutrition, stress, sleep deprivation, narcotics, and the effects of anesthesia. Being put under two times in one twelve-hour period took a toll on Richard’s body, but weeks later, any remaining mental confusion should have cleared. He’s eating and sleeping well, and he’s off all drugs. The only stress he seems to be experiencing is that of not knowing what happened to him.
We’ve done everything we know to help his body begin to restore itself. Richard threw away the hospital-prescribed Percocet, and instead, we take him for cranial-sacral work and acupuncture. He’s on a diet of organic foods, garlic capsules, chlorophyll drinks, detox teas, unsweetened juices, and healing broths. No drugs except a few ibuprofen for muscle aches. He remains like a baby, seemingly requiring nothing but nourishment, rest, and sunshine.
There isn’t anything to do but proceed with treatment and see what information can be found by the specialists. After a couple of sessions with the speech therapist, I ask for her evaluation.
“Cognitive communication disorder,” the therapist says. “The kind of deficit that is both expressive and receptive.”
“What’s that?”
“He can’t find the words to express himself, and he can’t sort through what is being communicated,” she says. “We haven’t had a chance to make a full evaluation. And we can’t do that right now. Because we haven’t received approval from his insurance company.”
“The company he worked for is changing providers. Can we start right away anyway?”
“You don’t want to take on these costs yourselves,” she answers. “It’s thousands of dollars.”
“How long do you plan to give him therapy?” I ask.
“Eight weeks. Then we have to switch gears and help him find coping strategies for working with his disorder.”
Waiting is nonsense, I think. I hire a practitioner who specializes in Brain Gym, a movement-based program to enhance memory, concentration, and physical coordination, and a method that we’ve used with positive results for our son’s challenges in school. We go for a few sessions, until we know enough to practice on our own. Richard stands in the pleasant suburban office touching his left palm to his right knee, then his right palm to his left knee, a movement he finds challenging.
“These activate the brain’s ability to retrieve information across both sides of the brain,” the therapist says. She has Richard draw figure eights in the air, and teaches him to breathe differently.
“I don’t like it,” he says when we get into the car. He sits on the passenger side because his reactions are too poor to drive.
“It’s just a different kind of learning,” I say.
Richard shrugs his bony shoulders.
I remind him to do the exercises several times a day. He complies. Nothing changes. Brain Gym is to his brain injury as a flyswatter is to an elephant.
For Thanksgiving that November, Joshua comes to see his father for the first time since the surgery. My father decides to join us. Everyone is quiet. The children need more time alone with their father, and my dad’s presence keeps us on edge, like we can’t really say what needs to be said. We walk the beach. We talk about school and avoid talking about our fears for our family’s future. There’s a strange sensation of being suspended. Our politeness is uncomfortable, as if we’ve lost access to the honesty that kept us vital. Through the visit, we swim and walk and make meals in our tiny kitchen. (Richard cringes at the thought of going to a restaurant.) When everyone leaves, I keep trying to find purposeful activity, because action makes me think that I’ve recovered from what I witnessed in the ICU. When Richard and Dylan sleep, I write, sometimes in my journal, sometimes letters. I send a note to a few friends:
I am not in fear of anything that is happening to us, or might happen, but I am intensely lonely. The transition from being with a loved one who was so talkative and energetic, and from days filled with conversations, ideas, and dreams, to days of mostly silence is difficult. I am conscious of not asking more of Richard than he can do now . . . I am so very grateful for the love and support you have shown us while collectively we have been focused on Richard’s healing. I trust the Great Spirit enough to know that this small “disorder” is not all that is present at this moment, and that Richard has gifts that are emerging that are healing for him and will be so for others too. I trust that all of what we are encountering is healing us, in ways we can’t even know yet.
This is such a farce. I don’t know anything about what’s happening for my husband, or our relationship. In this moment, I’m determined to reshape him into the man that he was before, so he might serve our needs.
My new friends from my twelve-step group come to sit with Richard while I take our daughter to school activities or go get supplies. I’m grateful that though I’ve lived here less than two months, these people want to help.
“Have you got food? A place to live?” Rebecca grabs me the first time she sees me sobbing in the meeting room, mistaking my meltdown for that of someone who might be homeless. She ushers me out for long walks on the beach and slips me a lawyer’s card; she listens to everything I have to say when I’m nervous about sharing my terrible fear of loss with my daughter. Even though Rebecca’s going through a tumultuous divorce and raising two children, she’s thoughtful and calm and reassuring.
One Saturday, she takes me to brunch. There are tables full of others we know from the meetings, but we sit on our own, on the sunlit Laguna patio. We order eggs Benedict and sip strong coffee.
“What does he forget?” she asks, not realizing he is constantly in the act of forgetting. Both his working memory and his long-term memory are faulty. The RAM and the hard disc are shot.
I look at Rebecca’s long black hair, her elegant carriage, sensitive eyes. She’s the kind of woman I’d want to be friends with, even if I weren’t throwing myself at her mercy.
“My husband as I recognize him is gone,” I say.
“That man died to you,” she says.
I push the food around on my plate. I don’t tell her what I’m thinking: Sometimes death looks like bodies decomposing. Sometimes it’s the death of a memory or history or identity, a consciousness that slips away, a ship listing past the curve of the horizon.
My recovery friends offer their kindness. They make sure we’re invited to social events. They don’t let me get too far away. This despite the group having been recently manipulated by a woman feigning a cancer diagnosis. One day after a meeting, Grace, newly sober and grieving the loss of her mother, pulls me aside and tells me of the group’s encounter with a woman with Munchausen syndrome, of the lie calculated to collect sympathy and thousands of dollars for “alternative treatments” that were actually vacation trips to Europe.
“Jesus H. After that, how can you be so generous with me?”
“You can’t let that stuff ruin you, honey,” she says.
Generosity isn’t the first thing on the mind of the American health-care system. Richard is covered by COBRA, an extension of health-care benefits for eighteen months after his last day of work. When his company’s health insurance changes, no more therapy can be approved. We wait. Two months pass.
Richard’s health-care providers tell us they will not pay for his brain-injury treatment because they can’t confirm that he’s actually had a brain injury. They tell us that if the hospital had given us a diagnosis of an anoxic insult, then we wouldn’t have to endure this scrutiny. Now it’s up to us to prove the degree of his injury. Proof that we must secure by enlisting specialists. Specialists whom we can’t enlist because we have no insurance approval. It’s the catch-22 nearly every American without health insurance in this era knows intimately.
Because we grew up in Canada, Richard as a Canadian citizen and myself as a landed immigrant, we didn’t have to rely on the American health-care system. Even though we’ve lived in the United States for over ten years, we were always healthy, rarely requiring coverage except for annual checkups. Richard’s company, a national physical therapy corporation, does everything it can to help. But it can’t make the new health-care provider decide to cover us. Despite the stories told about the Canadian health-care system, that there are delays for treatment in socialized medicine, we never had to wait to be seen by a doctor or hospital in our lives, we never had to have treatment approved in advance of our care, and we never had to struggle to pay a bill. Even when we were a poor married couple with no car and two toddlers, we seldom paid more than eighty dollars a month for our entire family’s medical care. We grew up with the notion of a social safety net, used when necessary. With the clock ticking on a possible brain injury, and early treatment being imperative, we’re losing valuable time.
The insurance coordinator for the speech and hearing center writes, Without a written “predetermination of medical necessity,” payment will not be determined until the claim forms are received. By the time we bill and they [the insurance company] respond, the charges could be substantial. The treatment specialist describes how critical it is to begin work on Richard’s aphasia, the neurological damage to the portions of the brain responsible for language.
Weeks pass. When there hasn’t been insurance approval for the rehab program the speech therapist recommended, we decide to pay out-of-pocket to continue with Richard’s therapy. We hope that the insurance company will cover the invoices we’ll submit after he has a diagnosis. As the first few therapy sessions have shown us, he’ll have to learn the same things hundreds of times before his memory will start to absorb the new information. We ask the speech and language specialists for a plan, and we begin his sessions and homework assignments. My goal is for Richard to improve so dramatically in the first weeks that he will not require intensive therapy or long-term disability. This is a complete misunderstanding of our situation. It’s the kind of delusional optimism that will get me through the first years of our new life.
We wrestle with several insurance administrators to get approval for his care. I put Richard on hold for one while I’m talking with another. We juggle our days trying to get the information that will unlock the care that we’ve already paid for in our monthly fees. I refuse to believe that he will not reach his former capacity. I still can’t accept that he might not make it back.
Since the time in the cancer hospital, I’ve been sorting the family finances. We’re luckier than most people who have a serious illness. After paying our portion of the hospital bill, we have $10,000 in savings that we can use to get his treatment started. We tell the children that they will have to get through college with scholarships and loans, that we can’t afford more than a few thousand dollars a year for their education. Our home near Seattle has been for sale for months. The week Richard nearly died, a lowball offer had come in from a prospective buyer, and I’d called my friend-the-therapist for reassurance that I could turn the offer down. Since that offer, nothing. Richard’s paychecks ended while we lived in the cancer center. For twelve years, Richard paid into his short-term disability program, and now it’s the best resource we could possibly have. He has ninety days of nearly full-time salary, essential since I can’t work outside of the home while he requires this much care. We live frugally. We have no debt. We wait at the whims of the system.
When we receive medical bills from the hospital totaling over $90,000 for our preapproved surgery, I panic. We call the surgeon’s office, hoping this is a terrible mistake. In 2003, there’s not enough clinical data to support the use of the HIPEC treatment for Richard’s rare cancer. Only about a dozen hospitals in America and Europe offer the treatment. HIPEC will eventually become a standard of care for PMP: over 150 treatment centers will provide the surgery and chemotherapy. Still, many insurance companies will refuse to cover the procedure. This denial of treatment resources, combined with the lack of availability, means the costs for surgery and chemotherapy will remain highly variable. According to a 2011 article in the New York Times, price tags range from $2,000 to $345,000, depending on the surgeon, the hospital, the complications, and the length of hospital stay.
We call Dr. M and tell him about the ongoing need for care, how we aren’t sure if Richard has a permanent brain injury, but that we’re determined to do everything we can to treat him.
“We’ll take care of the hospital invoice,” Dr. M’s business manager says.
“Thank you,” Richard says and hangs up the phone, stunned.
“Ninety thousand dollars? Is that possible?” I say. Richard shrugs his shoulders.
We never receive another bill from the hospital.
Three months later, he’s approved for treatment. Providence Speech and Hearing Center sends us a report that’s so comprehensive in listing Richard’s deficits that I fall into silence. I stuff the report in the medical file to save him from depression. And Richard forgets there’s been a report minutes after being told of it.
SPEECH AND LANGUAGE EVALUATION
DIAGNOSIS:
Appendiceal mucinous carcinoma with pseudomyxoma peritonei syndrome
Anoxic insult
Cognitive communication deficit
INTERVENTION:
Richard has had no speech therapy since an evaluation at Newport Language and Speech Centers 11/25/03 due to a change of insurance. In November 2003 he was diagnosed with a cognitive communication deficit as a result of anoxic insult. Weakness was noticed in expressive language, auditory comprehension in noise, reading comprehension, basic math skills, executive functioning and high-level reasoning.
PLOF [PRIOR LEVEL OF FUNCTION]:
Practiced as a physical therapist
Immediate family consists of wife and daughter
Patient reports his wife is his primary emotional support
EVALUATION AND TEST RESULTS:
Speech skills
Weaknesses in speech production noted in patient’s monotone speech and decreased facial expression during conversational speech.
Oral motor skills
Oral motor strength and range of motion was found to be within normal limits.
Expressive language skills
Decreased conversational initiation
Use of monotone during speech production
Accurate use of higher-level syntax and grammar
Decreased skills in random enumeration
Hesitations during speech
No paraphasias noted
No circumlocutions noted
Receptive language skills
Decreased auditory comprehension of reading materials with background noise present
Decreased comprehension of higher-level reading materials
Difficulty planning and executing a multi-step plan
Decrease in comprehension of word problems
Decrease in recall of words over time
Pragmatic skills
Decreased use of eye contact; patient had increased length of eye gaze with decrease in number of blinks and gaze shifting
Decreased use of facial expression throughout conversation
Decrease in topic initiation and maintenance
Decrease in vocal variation
SUMMARY:
Patient continues to demonstrate a cognitive communication deficit, which is characterized by decreased abilities in executive functioning, short-term memory, pragmatics and expressive and receptive language. It is strongly recommended that he receive speech and language therapy once a week for twelve weeks and be referred for in-depth testing by a neuropsychologist.
Neither of us is working at any real-world job, yet it feels like we are working harder than ever. Richard’s body is slowly gaining weight and strength. I’ve been avoiding researching online, but now that we have reliable medical information, I find a list of common effects of brain injury: poor balance, slack muscle tone, unself-conscious posture, dysphasia or difficulty expressing one’s thoughts in words. Richard has them all.
I make a list of treatments suggested by brain injury survivors, ones that we can pay for with our savings: Chinese medicine, Tai Chi, massage, hyperbaric oxygen therapy, acupuncture, flower essences, physiatry (to plan his rehabilitation), speech therapy, and psychological counseling. He refuses all but the speech therapist and Brain Gym. I know that he trusts me implicitly and will do whatever I ask. But I feel there’s some sense that he’ll know what’s right for his body. I don’t press him to do more.
But the speech therapist says their treatment isn’t enough. To get a sense of Richard’s brain’s functioning, we need to find a good neuropsychologist who will test him to determine changes in information processing. Executive functioning, memory problems, emotional changes, attention deficits—all can be assessed. We ask friends to help us find a neuropsychologist who can take Richard through testing, training, and getting him the support he requires to get back to work. We wait another two months for the insurance company to approve the neuropsychological testing, and another month to get an appointment to see the doctor.
While we wait, my identity peels like old wallpaper from a neglected home. At first, I think I’m reinventing myself with the move. This is what my gypsy self does, I reason. But soon, I begin to see that I’m being altered in subtle and profound ways. I make a list.
THINGS THAT HAVE CHANGED (IN SONYA)
AFTER THE BRAIN INJURY:
1. She is five foot four inches, and she forgets that she is not tall.
2. She wears vintage slip dresses in ecru and burgundy because they are a nostalgic reminder of a time that she never had, never will.
3. More than ever, she isn’t ready to look her age. She dyes her mostly grey hair black.
4. She thinks she might like a tattoo but she can’t choose a design for the same reason she has no fine china: she can’t settle on something she’d have to be with the rest of her life. This despite the fact that she’s been with the same man for decades.
5. She speaks in a soft voice, speaks with and without looking people in the eye, speaks as if she knows what she is talking about, speaks on matters ranging from marriage to motherhood to money, but while she is speaking, she knows she doesn’t know anything.
6. What others want for her is different from what she wants for herself. She’s known this before. She just hasn’t come out of hiding about it.
7. She takes control. Well, more than ever. She tells Richard that he doesn’t need the cookies as she gives them to the guest. She organizes the calendar. She acts like she owns the place. (And she does. She’s been running this home since his first cancer diagnosis, and it will be years before she realizes that the family manager is an outworn identity.)
8. She doesn’t have any trouble fighting the hospital management, the insurance company, the medical establishment, the Social Security administrators, the disability providers, or the ones who get in the way of Richard’s healing.
9. In the house’s new silence, she becomes quiet.
10. She goes more and more into the wilderness.
11. As he cries often, she cries less. Except for at twelve-step meetings, where she cries every time she speaks. Truth is, now that life is full of real problems there’s less desire to create any drama.
12. She cringes when her husband calls her by the new name “sweetness,” completely unable to find the sweet within herself.
13. She fills her calendar with seven, eight, nine very important appointments and to-do items each day to avoid thinking about their situation.
14. She doesn’t always realize she is living with immense grief.
15. Grief looks like being unable to read for the first time since words denoted sounds.
16. Grief looks like smiling when she doesn’t want to.
17. Grief looks like helping her mother, her grandmother, her daughter, her sisters, the landlady, and quite a few drunks, so she doesn’t have to be inside her own life.
18. In the midst of her grief, she really would like to find a new way to hurt her body, but she has closed all those doors.
19. This is why, when her new friends come to her door and propose a dip in the water or a walk on the beach or a funny movie or a meeting, she takes their hands and she follows. This is why, when her writer friends offer to read her pages, she says yes. A friend says, “The witness wants to be witnessed,” but she can’t tell. She’s just living it.