As we got home from the Oncologists office Thursday night, Trish quickly began to fade. In retrospect, I think the news that she couldn’t get treatment for a fourth time was so devastating that she lost some of her will and hope.
She stopped eating and drinking, barely got out of bed even to pee, and slept. We were saddened to see her uncomfortable, but the severe anemia makes you lethargic, so it wasn’t particularly alarming.
But then Friday night she was up all night in pain. Becky, her sister, stayed awake with her as Trish writhed and cried. She pointed to her right hip, the same place that had been radiated in August, then full of cancer. Presumably it had come back.
The urgency to pee was there, but she could only dribble. And going to the bathroom was so complicated because we had no bedpan (which don’t work well anyway the nurses tell me – they always spill)
Becky almost work me up she was so concerned. (She and I would switch off night care for Trish.) I could see her visibly shaken having watched Trish go through that. “I think she’s really suffering”. Trish got a little better in the morning and slept most of Saturday. We decided to wait it out. Maybe it was temporary.
In the afternoon, I talked to Trish’s primary Oncologist, Dr. Hendricks, who hinted that we should be looking at getting hospice care for the home. In her estimation the cancer has gone too far if it’s causing this pain. And Trish has already missed 4 weeks of chemo because she is too weak. I knew the chances wer low that she could pull this out, but it was a lot harder to hear.
The ‘H’ word.
Six weeks ago, we alarmed Dr. Hendricks when we said the word ‘Hospice’. All we wanted was some nursing support for the home, and we thought we could get that from hospice care.
You can get home support from hospice care, but it generally also means giving up all medical treatment – including radiation or chemotherapy. Dr. Hendricks summoned us in after we asked for hospice, ready to forcefully dissuade us from forgoing treatment. But we quickly realized it was a misunderstanding.
This time is was not a misunderstanding. Dr. Hendricks is telling me she doesn’t think there is any more chance to prolong Trish’s life safely and painlessly. Trish she responded with alarm – even in her fatigued anemic state.
She knew what hospice means. Hospice is the final chapter. But we hadn’t made the decision yet, and Dr. Hendricks only hinted at it, so I remained hopeful that we could still find a way to achieve remission and get a little more life.
Accepting her fate
Trish is doing as well as can be expected of a young dying mother who was swinging from the bars of the trapeze rig and adventure-traveling around Africa just 90 days ago. She doesn’t complain. She never asks ‘why did this happen to me?’ or even suggest this isn’t fair. She doesn’t pity herself or want yours.
She is as defiant and disrespectful of the authority of nature as she was of any other authority. (Former bosses know what I’m talking about.)
At times, there is great optimism, but there is a growing resignation of fate. Earlier this week, when were discussing medical issues, she burst in to tears and said ‘Will I ever be able to go to Honduras and swim with whale sharks?’. It broke my heart, but I had to tell her that it was very unlikely. Although we were still hopeful she could rebound and get a little quality of life, the possibility of going to a third world country is unimaginable.
Becky found an aquarium in Atlanta where you can swim with a whale shark in a tank, and supposedly they have handicapped access. If we can get some stability in her condition, we will fly there and jump in the water with the world largest fish. Trish was excited that was possible. She’s done nearly everything she ever wanted to do in life, except swim with a whale shark.
She and I had a moment alone on Saturday. The girls were with friends, and the sisters Becky and Paula were both on airplanes, one coming to us, and the other leaving – the changing of the guard. We had just returned from Suburban hospital where she had blood drawn in advance of the Monday transfusion.
The tears started streaming from my face. “Trish, you have been my best friend, and I will always love you. I will take care of your girls, I promise.”
She held my hand and put her limp arm around me. I know she was groggy with meds, but she told me she loved me and that it would all be okay. “You’ll get through it.” She said confidently. And she didn’t let go of my hand until she fell asleep.
The dark night
The night became a nightmare. By 9:30pm she was restless and moaning in her sleep. I watched her closely. This wasn’t normal. An hour later she yelled ‘stop, stop, stop’ and what followed for the next 4 hours was the most excruciating agony I have ever seen someone go through.
She would emit a muffled scream while clutching her right hip. ‘Ok, Ok, Ok’ she would tell herself, eyes closed, as if to psych herself up. The pain would come in waves and break through the Dilauded painkillers at the highest authorized dose. ‘Please help me’ she mumbled. There was no comfortable position.
I panicked and considered taking her to the emergency room, but that itself would be difficult and painful. Near midnight, I got the approval from her Doctor to give her as many painkillers as it took to control the pain. There is no maximum dose for terminal cancer patients, and they don’t OD, especially if they have become tolerant.
It was a great relief that I could try that instead of heading to the emergency room on Saturday at midnight. And I deeply appreciate that the doctor called me back so late on a Saturday.
Paula, Trish’s sister, arrived from Tahoe around midnight to a very frightening scene. The dilaudid takes 90 minutes to reach full strength, and it took me a few more hours before I got enough in her to control the pain. By 2:00 am she began to sleep, fitfully but without the severe pain.
Paula and I talked a bit, but there was just a lot of silence and tears. She gets it. There isn’t much to say. We are getting closer to the end. This is what they said it would be like – thing go badly fast. Trish continued to talk and mumble but we had finally controlled the pain with 48 mg, which was equal to her entire day’s dose just a week ago.
At 5am, Trish reported no pain at all, and I nodded off for 30 minutes. She awoke me with crying whispers ‘help, it hurts’. Fuck it comes on so fast.
We repeated the pattern. It took another 90 minutes to control the pain again. She was incontinent, so confused that she was nearly unable to take her pain pills, and increasingly short of breath.
I called the doctor back at 10am and based on my report from the night, she instructed us to head to the emergency room. Trish needed better pain management than the slow-release oral Dilauded can deliver.
Paula and I struggled to get her in my car, she was entirely dead-weight. She pee’d everywhere. We changed her twice. The third time we just left it. I played the Slash/Iggy Pop song ‘Pee on the ground’ for her in the car. I got a faint smile and chuckle from Trish. Paula stayed back with the girls, and I took Trish to the ER. I did not know it at the time, but this was probably Trish’s last car ride.
The ER on Sunday is mostly filled with sunday sports injuries, some serious and some mild. Across from me is a couple whose 22 year old daughter overdosed. The girl is flopping on the floor refusing to sit in the wheelchair, and with her eyes rolled back in her head, softly says to her mother ‘You hate me. You hate me.’ It’s sad.
My daughters won’t even have a mom with whom to be that angry. It doesn’t seem fair. I shouldn’t be so bitter, but sometimes I can’t help it.
When they checked her in we were told to wait about an hour, but it took twice that long. My blood sugar got low and Trish was comletely passed out in the wheelchair. I macguyvered a makeshift pillow out of an umbrella bag so she could sleep and I grabbed the best I could find from the vending machine.
Once we were admitted, a nice doctor came right over to our room five. Quickly and apologetically he asked the usual questions, and emphatically said he’s sorry we had to wait so long in the ER.
Nurses start coming in and out. One of them says ‘She doesn’t look good, let’s get this moving.’ I don’t think she suffered in the ER because she just slept, but WTF? How could they let people that need a few stitches in ahead of Trish?
She barely responded to the nurses when they ask her name. She’s been mostly unresponsive today. I couldn’t even get her to take her medications while we waited. She appears to sleep as nurses come in and access her port for blood, get her on oxygen tubes and start the intravenous narcotics, but I’m worried she is still experiencing pain and fear.
Somewhere inside that dying body is still my beautiful bride Trisha. Her fingers close over my hand ever so slightly and I know she is there. Her hand looks so tiny on mine. They are dry and flakey from dehydration, pale yellow from anemia and weak from exhaustion. But she’s in there.
Again I burst into tears and I have to lean over and hold her head close. I love her so much. She responds a little and does a little cry, almost like a purr. She doesn’t want me to be sad, I know.
Life wasn’t supposed to be this way.
Respite from pain
How do you tell a mom that her daughter is dying? We all know what this probably means – she is probably too weak to do any more treatment whatsoever. Palliative care and hospice support will be next. Her Mom cried and cried.
Exhausted and stresses, I could do little more than figure out how to get through the night. I’ll figure out what needs to come next tomorrow. Trisha got transferred from the ER to the oncology unit around 8pm, and with the IV dilauded, she was definitely no longer in pain. She’s remained unresponsive and couldn’t even say her name and date of birth.
As they rolled her into the small double-room in the oncology ward, the Nurse technician emitted a little shriek and held up Trish’s catheter bag. It was completely full of dark, almost orange pee. The three nurses each gasped and scrambled to empty it before it bursts.
Trish had three liters of pee in her bladder she couldn’t get out. The nurses formed a bucket brigade to empty the bag into the nearby toilet. A small woman’s bladder might hold 1 liter at most, and you’d feel the need to pee with only a third of that. Three liters is epic pee.
We find out later that either the cancer is blocking the urethra, or more likely there is more nerve damage to the bladder and it is also paralyzed. It’s a good thing we got her into the emergency room today.
Trish’s nurse was sweet, but during the night, when Trish’s blood pressure went to 75/50, she shut off the painkiller pump. That was apparently a big no-no, and she gets reprimanded for it in the morning.
Trish didn’t suffer though, mostly because even with the pump off, she had so much residual dilauded in the system that the pain was controlled. They put her back on around 8am and she was just beginning to feel pain again.
Confirming the bad news
Dr. Hendricks came to us at 6am Monday morning. The sun rose over the helipad of the hospital. As usual, she is wearing sporty looking bike clothes from her morning ride.
I know this drill. It’s the most important part of our hospital day, these early morning visits. She woke me from my little sleeping chair, and we talked. Aside from the nurse’s mistake everything else went well. Trish got two units of blood overnight, drained the bladder and got lots of pain medicine. We dealt with the immediate issues.
She confirms her suspicions and our fears, that the cancer is unchecked and uncontrollable. There isn’t any real place for chemotherapy or radiation now – just palliative care and the H-word.
Trish is fairly coherent, the first time I have seen her talking in three and a half days, it seems contrary to stop treatment now that she is ‘better.’ But part of me knows that this is a spiral and though she may be okay on and off, I accept the doctors assessment.
Dr. Hendricks loves Trisha. She saw Trisha fight in 2010 to get back to the trapeze rig and dance. I know she wouldn’t recommend abandoning treatment if there were any good options.
She gives us a day to think it over, and Trish and I are alone again in her hospital room that she shares with a woman, 90-years-old, who snores most of the time. Trish looks at me and asks ‘Is this it?’ and I cry again. ‘Yes, this is it, hun. We just need to keep you out of pain’. She too is confused because she doesn’t remember the last few days, although she is convinced something bad happened because she’s in the hospital.
I recounted the weekend and showed her some pictures I took of her. She was shocked that she couldn’t remember anything, especially the pain.
It was like it happened to another person. “I know you don’t remember it, but please believe me that that Trisha was in deep pain and wanted help.” That must be so, so confusing and disorienting. Trish understood that we had to make a decision.
Shortly thereafter, as the medication began to kick in, she got really high and didn’t know where she was. When I asked her which hospital we were at she said ‘Holy Cross’ – a place we’ve never been. We are at Suburban Hospital in Bethesda.
And when the Price Is Right came on the TV, she would keep asking the nurse ‘Did I win something?’ each time the bells rang (ding ding ding) on the show. Paula arrived to take over for me and Trish said randomly ‘I thought you were bringing me a cat.’
I’m dazed myself after the last 36 hours. I’ve barely slept and havn’t eaten. I leave Paula and head home for the hardest thing I will ever do: tell my kids their mom is dying soon.