Today, on the tenth anniversary of Mom’s death, I found these tidbits that I wrote as she made her way through ovarian cancer
None are dated, nor are they written to anyone in particular or in any one journal or collection. It seems that I just wrote them to cope with some of the hurdles.
Chemo (written to my brother):
I just got back from chemo with Mom. I wasn’t expecting such an impressionable morning and I’m still reeling a bit from it. My first impression, upon walking into the “treatment room” was how MANY people were in there, perhaps thirty or forty, lined up in cozy reclining chairs against two walls, each with a cocktail dripping downward toward an eager, if trepedacious, recipient. Each patient had an individualized cocktail, and the nurses seemed to not only know exactly who received what concoction, but who spent the holidays with grandchildren (and how many!), who lived in what surrounding town, who was accompanied by a regular entourage and who (sadly, obviously) endured chemo alone each time. I’d have been moved to tears, had I not been moved by something much more pervasive, much more powerful – the hope, peace, compassion and quiet camaraderie in that bustling room. Everything was conducted with utmost efficiency melded with true empathy and I can hardly think of a face that didn’t smile or laugh at least once during our hour-long stay. And no one cried. It was certainly not a place for self-pity.
The other impression I had was very much like the lasting impression from Mom’s original surgery in Portland, where she made doctors laugh and pain management specialist alter how they regarded their field of expertise: When Mom entered that room, a happy buzz came over the room. “Edith! How was your holiday? Were all the grandchildren with you?” “Here she is! Hi Edith!” Omi was obviously among friends who truly adore her, and she them. She greeted each nurse by name and had something kind and endearing to say to each one: “Brenda, you are always so cool under pressure. Good to see you!” “Here comes my favorite sex-pot nurse!” (Yes, I blushed. And yes, she was!) And one nurse from Frankfurt, Stephania (someone I’m sure Mom’d want to set a son up with, were they not all taken), drew Mom’s blood and engaged her in a long, friendly German chat.
I have a feeling no one was more affected by Mom than the 49 (yes, forty-nine) year old father of five in the chair next to her, awaiting his first chemo treatment for a rare cancer of the lymph nodes. He discovered a lump on his neck a year ago and went to two doctors, each of whom dismissed it, before finally being diagnosed. He was clearly scared, but his wife was obviously still very much in shock. Mom’s comfort with the nurses, the routine, and the disease seemed to put him at ease as he received his first chemo cocktail. His wife held a check for $10,000 in her hands. It was obvious to me that this unexpected turn of events in their lives was demanding everything they had to give – both emotionally and financially.
Not be peachy, but… whatever’s pissing you off today, whatever seems too enormous and daunting, whatever stresses you, let it go. Just for today, if possible. Because any of us could be in this man’s shoes… and in his reclining chair. Or in the young lady’s chair across the way. No more than 30 and beautiful even without hair, and she had a sparkle in her eyes, as she sat there with a colorful hand-knit blanket over her. Only one person in the room, though, evoked pure pity in me. A tiny, frail, very old lady, sat alone, bolt upright, staring straight ahead, not because she was deep in thought or mesmerized, but because she seemed completely lost and lonely. She seemed to be trying to smile, but could no longer find the strength or the will. Of everyone there, she seemed to have the least hope. Mom – in spite of having just been told by Dr. Dibb that her cancer is fatal (“he never said it that clearly before,” she said), seemed to have the most hope… or at least instill the most hope in others.
In that treatment room this morning it could NEVER be said that Mom was selfish, self-centered, ego-centric or intolerant. Much to the contrary, she laughed the loudest and embraced and accepted her role as friendly and familiar “Grand Dame of the Green Reclining Seats” with aplomb.
I wish you all could have all seen it – and that none of us had to.
Feisty and Defiant
When my mom had her original surgery for ovarian cancer, her "pain management specialist" was in training. He came into her room every day, stood at the foot of her bed, and held up that condescending smiley-face chart and asked her how her pain was on a scale of 1 to 10. In four days, she refused to answer him on the terms he was looking for (compliant, categorized). Instead, she'd say things like, "What pain do you mean? The emotional pain of suddenly be faced with advanced cancer? The pain of hearing all those voices in the hall and not being able to get up and close the door?" The next day she said, "This is not a multiple choice question. Now if you want me to write an essay about my pain, I can do that. But please put those pictures down and don't request tidy little numbers from me!" On the last day, the pain management specialist came in the room, sat next to my mom on the bed and said, "Good morning, Edith. Let's talk about how you're feeling..."
I think he learned a LOT from my mom. I certainly hope he did!
She was given "maybe two years, if all goes well" at that point. A year later, when cancer was found in her liver, she was given "two months, eighteen tops." Now, almost 20 months later, she looks very much like a cancer patient, moves with great difficulty, and her body has been riddled by more chemo than most cancer patients ever endure. But that feisty, defiant spirit is unscathed. We know that when she stops needing to control everyone and everything around her, her fight will be over. Since we just found out that this most recent chemo didn't bring her CA-125 down by much at all, we expect her to concede in the next few months. Our hope at this point is that she makes it till Christmas. If she does, she'd have again defied everyone who said she couldn't and wouldn't... and she'll die as feisty as she lived!
From my journal and the journal I kept for Mom: her last weeks:
From my own journal:
March 29th through April 4th:
I had been in Ashland from Monday, March 29th through Saturday, April 3rd. At the beginning of that trip, Mom was still eating, walking, and playing a mean hand of Rummy. She had very little energy, threw up quite often, and was obviously depressed, but she was still very much “living life.” By the time I left to drive the 9 hours home on Saturday (thinking it would be at least a week or two before I’m needed again), she could no longer play a threatening game of Rummy, and finding all the words to make it through a sentence was a huge challenge. But I left to spend (what I thought would be) some time with family and getting some work done before coming back. We all went to dinner on Saturday night when I got home, Tom and I had some time together, and I took Kat shopping and to lunch on Sunday. I packed (or rather re-packed) a bag on Saturday night just in case.
Monday, April 5th:
On Monday morning, as I was heading out work, Dad called and, not wanting to alarm me, but wanting me to sense his urgency, said, “You might want to come sooner rather than later.” Tom and I briefly discussed me driving 9 hours back to Ashland, but quickly decided I’d fly instead. I arrived at Mom and Dad’s at 6:00, greeted by Stephan and Michael (Chris would arrive the next morning). The four of us siblings hadn’t been together without families in many years, and we’d embark on a wonderful rekindling of childhood interactions and memories (and a few familiar conflicts). Mom was drastically different. She was in bed and seemed incoherent. After spending some time with her, however, I realized that she wasn’t incoherent; she was simply “in a different place.” She looked at me when I greeted her, but didn’t talk or smile. She did respond to me talking to her, though, and was very obviously completely coherent, but unable to express herself. A few words could be formed, but mostly she spoke in “grunts.” When asked a yes/no question or given a command (“let’s turn you on your side”), she made it clear that she was very much “here.”
Mom had refused to wear a diaper and insisted on getting up (a huge ordeal for all) to walk – with much help and support to the bathroom to pee. It was clear that we’d need a commode soon. Mom has always been strong-willed, and although she was sweet and childlike now, she still made her opinions known – with more dignity than she did sometimes previously.
From my own journal:
Tuesday, April 6th:
We each took turns being with Mom and this is when some of the really special times would happen. In addition to her making her momentary/bodily wants known, she also made her thoughts known. “Phi Beta Kappa” she said, as Stephan and I sat with her. “Four point 0.” Then “downhill” (skiing?). Is it possible that one’s life really IS “relived” in a sense, just prior to death? The thought took me by surprise.
From the journal for Mom:
April 6, 2004 (Yes, that’s a four!)
I thought I had filled up this journal to you – this journal that had far too few pages to document your journey – long ago. But there are two more pages left, and if I write really small…
I was here last week with Nikki, drove home on Saturday because we thought it would be a while. Spent Sunday with my family, got ready for work on Monday, and on the way out the door, Dad called: “You might want to be here sooner rather than later.” So my brothers and I are all in Ashland now because… it’s time. After almost exactly four years, it’s time. The Hospice nurses now predict “a few days.” You aren’t you: not controlling, not in charge, not loud. Not walking alone, not eating, not talking. In diapers – which you hate. This is so hard to watch, but it must be harder to experience. You are aware of everything but can’t express yourself. If you try to talk you risk a coughing fit – and that is excruciating for you and so scary for us. Your words – what few there are – are jumbled and confused, but I don’t think your thoughts are. You know perfectly well what’s happening. Last week you said you were scared, but this seems different. I don’t think you’re scared anymore – but I am. I need to know – as Elisabeth says – that you’re there…somehow. Tom says Papa’s presence – even if just in his thoughts – is comforting. Elisabeth and I have chosen to believe that somehow you’ll be present. How could YOU, of all people, be otherwise?
From my own journal:
Wednesday, April 7th:
Hard day – for Mom and for us. Mom seemed agitated. She wanted to get up constantly – and would try to get up alone. We’d have to support her completely as she stood up. She wanted to pee – or at least sit – so we’d oblige her each time. It takes three of us, and it’s physically exhausting. But each time she’d moan or move to get up, we’d help her. She’s gonna do this HER way. She seems agitated. Eventually, the Hospice nurse inserts a catheter and we think that will relieve her need to constantly get up. We’re wrong: she still wants to get up AND she hates the catheter, pulling and tugging on it and asking (in grunts and grimaces) that it be removed.
Dad tells me – tears in his eyes, grimace on his face – that he’s betrayed Mom. She wanted a dignified death and he sees it as completely undignified. He’s tortured by the whole thing. Mom continues to respond in one-word grunts or hard-to-understand phrases – but the phrases are fascinating, and obviously reflecting moments and experiences of her life. She says, “Elisabeth ferein” (“vacation with Elisabeth,” I assume in Germany) and I break down. I tell her that Elisabeth loves her and is just like her and that I’m lucky because I get to keep Omi through Elisabeth.” She grimaces, like a sob, but without sound, and tears run down her cheeks.
April 7, 2004 4 AM
Soon. You always fight everything. You fight this too. Let go, Mom. Be at peace. It’s OK. It’s OK to go now. The words – when they find their way out – are barely comprehensible. In the past hour: “Oh God!” twice. “Where’s Michael?” “Where am I?” “S’Geht nicht gut.”
Why do you keep getting up to pee? There’s no pee left. Relax, Mom. Let go. You don’t want to be here like this.
I will miss you every single day. But I’ll miss who you’ve been in your life, not who I see at your death. It’s so hard to see you like this – like a baby… so compliant, so naïve, so NOT Edith. The last thing you said before I left you with dad tonight was, “Thank you, Carol.” You’re so very welcome, Mom.
4/7/04 10 AM
It’s hard to get used to: the slightest noise will rouse you and you can show with a grunt that you’re mentally here (at least to some extent), but if someone didn’t know that you’re aware, they’d think you checked out already. Your mouth and eyes are at partially open positions. You seem unresponsive… but you are quite alert under it all. You asked Michael last night, “Am I dying?” He said, “I don’t know.” But you are. This is the process of dying.
4/7/04 6 PM
Just words, barely comprehensible, but important: “Phi Beta Kappa,” “Downhill” (skiing?)
From my own journal:
Thursday, April 8th:
There are no real days or nights; it’s all the same – though Michael, Steph and Chris take shifts to be with her, with me as a back up and Dad hopefully getting some sleep. At 4 AM Mom has had it with the catheter and wants it OUT. I call the Hospice nurse and tell her we definitely want it OUT. She walks Dad through it. Later in the morning, Mom is slightly more comfortable – but continues to insist on getting up. Finally Chris takes her on a walk around the house in the wheelchair. Her eyes are closed, but she can sense it and sits peacefully in front of the fire in the living room for a long time. After that she sleeps for a bit. When she wakes up, she adamantly insists on everything – all clothes, all tubes, her diaper, being removed. If we don’t do it, I could swear she would have! We strip her naked. She tries to even remove the blanket, so we take that off her too. This is the skinny dipping mama after all!
Stripping completely is the beginning of the most incredible, spiritual, phenomenal experience I (or, I’d say ANY of us) have ever had.
4/8/04 8 AM
You are fighting death with the same fervor and defiance with which you fought the disease. Your oh-no-you-don’t attitude is still strong – even without the ability to speak more than a garbled word or two… or eat… or stand. Oh-no-you-don’t keep that catheter in me. Oh-no-you-don’t give me meds that I don’t want (is it because you’re not in pain? Or because you want a “pure” experience?). Oh-no-you-don’t. You’re STILL in control.
What is a “dignified death,” anyway? Is it one that one orchestrates him/herself? Is it what the Hospice workers call “a conscious death”? I know for sure what it’s NOT. It’s NOT a death that takes place in a hospital, surrounded by tubes and strangers. I’m sure of that. And as hard as it is to watch you helpless in so many ways, you are surrounded by the people who love you the most, and you are not “hooked up” and we DO listen to you and often know what you feel and need (which I’m sure doesn’t happen in the hospital). And our primary concern is your comfort (what comfort there can be…) and letting you know how much we love you. Maybe death, in itself, simply isn’t dignified. But maybe a death when Nature brings it, surrounded by love and compassion, is the most dignified it can be. I believe that there’s important work going on as you transition, and for the first time in my life I’m pretty sure that there even IS a “transition” and that there even IS another side. That work that you’re doing – whatever it is – is what makes this death, one that occurs in its own time, dignified. That’s what I’m choosing to believe, maybe selfishly, maybe not. But it’s the best I can do… and as “correct” a belief as anything else.
4/8/04 12:30 PM
Incredible. You absolutely insisted on having everything OFF – catheter, diaper, nightgown, even blankets. Everything! For a while, we couldn’t figure it out, but it became apparent that you were determined to lie flat on the bed, in the light shining from the skylight, stark naked.
Then you shared where you are with us:
Almost singing: “Where I’m gooooing!”
Helicopter (Hawaii? Alaska? Dad knew and he and Mom agreed…)
“Elisabeth ferien” (about their trip to Germany when Elisabeth was 13! This one made me sob, and I told Omi that Elisabeth is sooo much like her, it means I get to KEEP Omi through Elisabeth. She grimaced and “sobbed,” without a sound, a tear running down her cheek…)
“Floating in there.”
“She’ll be there.”
“Will (we’ll?) be ready.”
“_____ (name?) will be there.”
“I want to geh.” (Trying to get up and go with entire body… legs in cycling or hiking motion.)
And then, she did something she hadn’t done in two days: she opened her eyes and focused – on Dad – and said to him, clear as a bell, “Can you carry me over?”
4/9/04 4 AM
She’s no longer responsive to our questioning. Her eyes are almost always closed. And yet, she continues to insist on getting up (but she’s like a rag doll; it takes three or four of us to make it happen) to pee every few hours.
Difficult effort to communicate. Voice no longer reliable; must look at tongue, lips, throat. Very difficult to discern. MUCH guessing. The place was likely a lake (“Wahlsee?”) and the memory was obviously NOT a happy one. Now looks asleep, except one eye very slightly open – still… always.
Deep sleep since noon. Very regular breathing. Strong.
Mom is almost totally unresponsive. No muscle tone whatsoever. Eyes shut, except a slit in the left eye. Opaque sheath over her eyeball (can she see?). And yet, she STILL insists on getting up (it takes three of us!) to sit on the commode and pee – and she does pee!
She said to me, “My mother.” I said, “Your mother? Let me tell you about MY mother!” And I did.
4/10/04 5:45 PM:
And that was the last thing she ever said to me. After that, she went into a semi-comatose state. She still flailed and wanted to sit up, but only one last time, early this morning. Since the she’s been completely limp and non-responsive.
At noon, the Hospice nurse came. Mom was in distress: pulse 105, respiration 25. Working too hard. Until she could calm down and stop fighting physically, she wouldn’t let go, the nurse said. At 3:30 we (Dad, Chris, Michael and me; Stephan had to go home) tried to give her a full cc of Morphine and ½ cc of Adavin. But she couldn’t swallow anymore and she choked – the loudest, scariest, most god-awful terrified (and terrifying) sound I’ve heard in a long time. I didn’t know it was choking; I thought it was the sound of death! I called, “Mommy!” and ran out of the room, covering my ears. I couldn’t handle it. But it wasn’t death. It was her body working – still working – to live. After that, we turned her on her side, and that’s where she is now, breathing slow, shallow, regular breaths @ 12 per minute. God, she is so incredibly tenacious – in life, and, it seems, in death… or at least in the process of it.
She’s not my mother. My mother left after she shared her “transition” with us on Wednesday. She doesn’t look anything like my mother. She looks like a skeleton. No character, no spirit, no personality. Now we’re just caring for her body until it gives out – likely within hours.
I had a thought/dream (not sure which; I’m hardly sleeping at all!) in the middle of the night: Miss Saum, my kindergarten teacher, used to pin “notes to go home” on our clothes. I dreamed that I pinned a picture of Mom at her most beautiful to her body so the mortician could see how beautiful she was before he cremated her. I wanted those who would care for her body to know that she was SO not just another skeletal cancer patient.
At 4 AM, Dad gently woke me up and held my hand as we walked down the hall and as we approached Mom he said, “If you’re very quiet, you can hear how peaceful death is.”
Just before dawn on Easter Sunday, as the half-moon rose over the horizon, Mom drifted peacefully and quietly from this life.
Her breaths were like a tiny, delicate little bird’s: very shallow, very regular, and very soft, with a faint rhythmic “click” to each breath. She looked totally relaxed. But she didn’t look like my mother. Mom had taken leave two days earlier. That was so obvious to me as we helped “usher” Mom’s body across as she’d asked. Over the period of an hour, she drifted so sweetly and peacefully away, surrounded by her family, and within the waning glimmer of her beloved Bavarian candle.
After she died, Dad went outside and picked a dogwood flower and placed it on Mom. He commented to me that dogwood flowers only stay totally white for a short time. He was right: in a matter of minutes, dark spots appeared on the tip of each flower. Then we all sat with her. No one cried. It was simply too serene and beautiful, too “holy” even, to cry. Michael and Dad even took a few pictures. Mom looked beautiful in her white lace gown, under the white lace sheet, with the white dogwood flower on Easter morning as the sun rose.
About two hours after Mom died, a Funeral Alternative couple came to get her. A husband/wife team, they gently told us what would happen. State law requires gloves and a plastic sheet and that she be covered and encased. Previously, I’d thought I couldn’t stay for such a thing, but I would have never considered leaving at that point. They handed me the dogwood while they wrapped her and placed her on the gurney. Then they “zipped her in,” forgetting to replace the flower – which I wanted with her. So I found my way to her, unwrapping her, and placed the flower on her chest. Then I gave her a kiss and said, “Schlafy, schlafy (my family’s “sleep tight”) one last time.
I am so honored, so blessed, to have shared Mom’s life, and death, in the past three weeks… and four years… and forty-seven years. So incredibly blessed. And I have Mom to thanks for showing me how peaceful death can be. I love you, Mom. Thanks for being such a wonderful mom. And sister. And even daughter. You will always be with me – as all three.
Isn’t it fitting? Almost exactly four years ago, I wrote to you as we flew amid turbulence in the tiny LifeFlight plane to OHSU, promising you we’d fight your battle together. And today I’m in a plane again, making my way back to my family after spending three weeks with you. I know that, although we lost the fight, we did fight it together. I did keep my promise to you.
Be peaceful where you are, Mom.