Trish is home from the hospital finally. She was admitted 5 days ago after unbearable pain and an emergency room admission. It’s Thursday September, 27th and I haven’t seen her in 36 hours - the longest stretch in months. She arrives by ambulance and seems okay, although a bit disoriented. They have a little bit of trouble getting into the house with the extra long stretcher.
She’s back in her bed, in our TV room, not unlike the way she was before. But it’s completely different now. There is no hope of remission. She will stay in hospice care now until she dies. No one knows how long, but it’s weeks at best.
The significant advantage of the hospice is that we can have a PCA (Patient Controlled Analgesia) pump at the house, which puts the dilaudid in her system continuously with a trigger that adds more when she needs it. And a nurse comes by frequently to help with care, which is a huge relief.
They also ‘installed’ a catheter in my cyborg wife, who has silicone tits, steel vertebrae, cadaver skin, a battery operated hole into her arteries and now a device to pee out of. The catheter is super important because her bladder is paralyzed and can’t pee. Trish absent-mindedly mumbles “It’s awesome, I can just look at TV and pee without having to get up.”
She experiences some pain, and we have to dial around to a few places to get a doctor to authorize an increase in painkiller because her primary oncologist isn’t available It’s a good thing I kept all those millions of business cards they hand out. It’s scary for a minute – echos of what I went through on the weekend, but we give her some more and she finally sleeps.
It turns out to be an 18 hour sleep. Trisha she doesn’t wake up till the following morning at 10am. Meanwhile, the house is packed with her family arrived from California – 6 adults and 3 kids – and the atmosphere is one of love and fun. Sisters and brothers, neices and nephews: Becky, Kevin, Paula, Jim, Eric, Mira and Sylvie.
The kids play Wii and the adults talk outside on our new deck with a small fire to keep the cooling autumn air at bay. We get a delivery of food from Little Things for Cancer, and arm wrestle till we are exhausted. It’s so good for the girls to be surrounded by family. They only found out Trish was terminal 48 hours ago.
When she does finally wake up, she is completely lucid. She barely remembers any of the past 6 days in the emergency room and hospital. Her enthusiasm gives us hope. The 12 of us go for a walk down the Sligo Creek trail in the warm early-fall air. Kevin pumps up the tires of every bike we can find in our shed so each kid has a vehicle.
The wheelchair is new from the hospice, with a high back and a reclining position – Tink has pimped wheels! But we barely get down the hill before the first accident happens, fortunately not with the cancer patient. Emma takes a really bad tumble off a scooter and scrapes her knee, elbow and back so that the blood dripped down her skin. Like her mom, she didn’t cry from the pain. (Seven days later she was still limping…)
Up and down the path they ride, like a little biker gang. Trish smiles and takes in the fall beauty of Sligo Creek. She’s been a hundred times. But what does it look like to see it for the last time? Her spirits are good, and she cracks a few jokes and teases her family.
I can’t tell you how much Trish’s family have made me, and my girls, feel loved and supported. Becky and Paula, her sisters, have been with me for some of the darkest and most frightening parts. And when she was admitted to the ER, Trisha’s entire extended family came in 24 hours to be with us. Trisha doesn’t realize everything that they have done for me, but she would be filled with the deepest pride and love if she did.
The next day we mobilize three cars, including a minivan rental with mattresses and pads on which Trish could spend the long ride to the ocean. Trish was born near the ocean and would die there if she could. Whenever the nurses or social workers would say ‘what would you like to do?’, she would say ‘I want to see the ocean’ to which they would say some palliative cliche, thinking it wasn’t possible.
Rehoboth isn’t exactly the best beach Trish had ever been to. She’s seen black sand in Hawaii, rocky fjords of Norway, typhoon ravaged Phuket shoreline, the shallow tides of Zanzibar, and the pristine snowy sand of Tulum. But she wouldn’t dare complain even if it occurred to her. She just wanted ocean.
The ride through suburban, rural and again suburban Maryland is long and slow even in beach shoulder season. It’s a little chilly and we make sure Trish has a cap and blankets as we roll her out to the boardwalk. The kids eat some trashy food, probably french fries. I stay with Trish, who sips milk and ice and fruit juice. She barely eats any food anymore.
The view of the ocean is good, but a distance from the boardwalk. There are beach wheelchairs one can rent or borrow to get on the sand, but off-season they are stored at the town police station and we don’t want to waste time figuring that out. We probably only have a few hours at most.
The kids are playing noisily on the park bench. Seagulls caw overhead. Boardwalk sounds of ski-ball and popcorn poppers reverberate. But Trish is silent. And as she takes it all in, she tells her sister Becky ‘I just want to hold you’, and grabs her hand lovingly.
I watch, and think how sweet it is that Trish is being so affectionate. It’s not like her. And then I realize, with astonishment and sadness, that she’s preparing us for her departure.
I think she’s known longer than we have. A week earlier, before the hospital visit, Trish and I were along together. She was lucid and out of pain. I grabbed the opportunity to tell her I loved her and how grateful I was, and how I would take care of her daughters and her memory. I cried and held her hand, which she took warmly.
She said, quietly,”I know, honey. I love you very much. In fact I love you in new ways I didn’t know. If I ever had any doubts, you ended them. I couldn’t even try to love anyone but you.”
My marriage, 14 and some years long, was half spent with cancer. Between the early alcoholic years, the baby years, the growing professional years, and the cancer years, there weren’t many where we could work on our our relationship in a more natural state. Maybe there never is a natural state in a marraige.
We struggled. There were times I wanted to leave, and times she did. Trish was emotionally inaccessible and struggled with physical intimacy of all types. I was a recovering addict, easy to anger, impatient and often felt cheated.
Around 2008 we went to couples therapy because we were at a low. Ostensibly we went there for Trish, who knew she struggled with intimacy. But it was me that changed.
The therapist practiced imago therapy in which you focus more on learning to reconnect and love your partner than you do on issues, squabbles or debates. We spent about 40 total hours in therapy and Trish endured and hated every minute of it. She tried to change to the extent she could, but it was hard for her.
But I came through a different person. I saw more clearly why I loved her so much. And I learned to be confident enough to handle the vulnerability of unconditional love.
It didn’t just save our marriage. It gave me the strength and courage to take care of her and my children. I had no idea when we left therapy, that I would have just 50 months remaining with her, but they would be the most loving 50 months we would spend together.
And in uttering those words last week she put my heart at rest. And she let the grieving happen without guilt or remorse. I am grateful and indebted that she had the courage and love to share with me. Feelings of love, dependence, and gratitude were so hard for her to express.
“Fuck, Kevin, I don’t think we can do it.” My burly brother-in-law, Kevin, furrows his brow and chuckles, “Of course we can” and pushes Trish toward the sand. The heavy chair on narrow wheels dig deep into the sand, lurching Trish forward a little. She gives a little laugh. “Just pick her up!’ he says, and we carry her, awkwardly in the wheelchair to the waters edge.
The beach is nearly empty but for us and some gulls. The sun comes out intermittently and shines on us playing in the sand and surf. Trish’s feet get wet when the bigger waves come up the shore, getting her pants and blanket salty, sandy, wet. She must be so uncomfortable, but in between small adjustments, and sips of juice and a shot of painkiller here and there, she is present and in the moment.
Lily and Eric pull up their pants in a brief effort to keep clothes dry, but are splashing each other and soaked within minutes. Emma stays closer to her mom, not wanting to get cold and sandy, and maybe realizing that’s the more important space to be. We have to hold the wheelchair steady so it doesn’t sink deep in the sand, the way your toes do in the surf. There is laughter, and a few passages of quiet where Trish could hear the surf for the last few times.
And then it’s time to go. Trish has reached her pain threshold from sitting, and soon needs to lie down in the minivan. We head back to the boardwalk, pulling the 150lbs of Trish and wheelchair back up the beach.
What does a boardwalk have if not ice cream and gift shops? Cookies and cream, mint chocolate chip, vanilla, and rainbow sherbet on cardboard-y cones fill our hungry mouths. (Whoever had the balls to call those ‘cake’ cones gets a special space in Orwellian hell)
Emma and Lily wander into the gift shop and browse the Rehoboth finery; key chains, t-shirts and shot glasses. Emm comes out after a few minutes and asks if she can have some of her allowance, $20, for a gift. Skeptical that there is anything inside worth five, much less twenty dollars, I follow her back inside to check out the rubbish I will try to convince her to skip.
She sheepishly points me toward the side of the shop, where, on the ground, are a handful of wooden plaques with inspirational messages, overlooked by the happy summer tourists. Emma picks one up and shows it to me. It’s about cancer, and how powerless it is over memories, friendship and love. “Of course, Emma” I choke back the tears and hold her.
The check out lady cheerily takes my credit card. It’s just another sale. I wonder how often I’m in the direct presence of epic human tragedy and have no idea. Probably often. We all experience grief at one point or another.
They embrace, and sob, after Emma shows her mom the plaque. There isn’t much to say. We’re going to lose Trish shortly and Emma is old enough to have some comprehension about what that means. Enough to know there are really no words.
It’s important, though excruciatingly painful for a young, tender heart and mind, that she make this connection. Lily looks on, searching for the feelings that correspond. She’s younger developmentally and will experience this differently than Emma. It must be so confusing for both.
The ride back is quiet. The sun sets. Trish is in the other car, asleep hopefully. Paula and I watch the Chesapeake region roll by as the sun sets, and talk about Trish, and what she meant to us.
And there are long quiet pauses, where we reflect in our heads about life and love and family and death.
Long, quiet, pauses.
(This post was written partly from an original draft, notes and memory a year later.)