Last Night with my Mom

Friday, October 17, 2008

I want to remember the details of this once-in-my-lifetime event, the death of my mother, by writing this. I want to turn toward my feelings rather than pretend I can hide from them. I finally got away from my desk Friday at 2:30pm and drove the back roads from San Geronimo to Petaluma Valley Hospital where my mother has been since Wednesday afternoon. I knew I’d be meeting Karen there although both us got delayed by Friday afternoon traffic.

My plan was to be with my Mom, Rae Russel, and see for myself how she was doing, see if she showed any improvement or decline from yesterday, Thursday. Young “Dr. K,” as he’s used to being called (his last name is Kawalek), told me yesterday that my Mom was dying. He seemed to accept my needing some time to get used to this, his new prognosis. I’ve become accustomed to taking what time I need to accept any doctor’s negative prognosis, in this case replacing my month-long perspective that she might still beat back infections in her body and regain full consciousness, however brief it might be. It took me 24 hours to accept his perception as accurate, have it feel right for me too. If my Mom showed no improvement today, if she was still struggling for each and every breath, then I’d ask Dr. K to confer with me, along with clear-headed Karen, one more time. We’d then decide how to proceed, either allowing Rae to fight on, or perhaps alter our course of action to what hospitals call “comfort care” or “palliative care.”

The question was whether to stop her IV and food and antibiotic. Thirty-year-old Doctor K was willing to continue, I increasingly realized, just to comply with my request, not because he thought treatment was any longer giving my Mom any chance for recovery. His opinion, based on his experience watching people near death and watching people die, which he voiced yesterday at the foot of Rae’s bed, was: my Mom was dying. He called her current breathing—fast (about 100 bpm), shallow and steady—a “death rattle.” Jeez. Maybe so I thought, but I’m not willing to concede this yet, nor act accordingly by stopping supply lines of fluids and food and instead giving only palliative painkillers like morphine. Morphine would relax her body so her struggle for each breath was not so intense. I just didn’t want to push her consciousness further down unless she was clearly in pain. This weeks-long struggle I had grown so used to was all about bringing my Mom to fuller consciousness.

True enough my Mom looked worse today, laboring to breathe, quickly and shallowly. The skin on her face looked tighter and, to use Karen’s chilling, accurate word, she appeared more “skeletal.” Damn if she wasn’t thin for the first time I can remember. Her life-long struggle with her weight, much of it painfully in front of me as a child—and why I made the unconscious childhood vow to never be overweight—and now her dream was realized. She’s thin, but likely dying. What a shame she can’t be up and about to show off her new look. She would have thought that she, a woman with self-described “big bones,” was too thin, but that can easily be fixed with a multi-day course of ice cream eaten at home by spoon. Another irony: what horrified me to watch for years as a child—my mother eating ice cream uncontrollably and with self-loathing—I would now gladly offer her in loving service if it were needed.

I made another short video of her breathing because I wanted to see and absorb it all, not look away—in fact all the more so because a part of me wants this not to be happening to my mother. But it is. So I choose to be with it, stay trained on the experience and as many of its details as I can. I want to learn from this and accept it too, as part of life, the defining part of life we call death. Just as much, I want to make a technological record, more powerful than glorious photography, the recording method of choice for my mother, Rae Russel, professional photographer, and also my father, professional photographer Alfred Gescheidt. I want to see this again should I ever wonder, days or years hence, why I made the care choices I might make today. I’m not a videographer but I’ve seen video’s power and advantage over film in capturing and conveying these events and my Mom’s condition. I also believe she would allow this because, for one, she’s a documentary photography. Second, she loves me and trusts me and knows I love her. I’ve often struggled with situations where putting a camera, still or video, to my head would remove me from the moment and turn me into a dispassionate observer. I had no such hesitation today.

Rae’s Petaluma neighbor and friend Cecilia Nunes came by to see her again for about an hour. She hadn’t seen her in days and with this distanced objectivity could assess any change in her condition more clearly than I could. I also left her alone with my Mom for about 20 min. to talk to her privately. Afterwards, she said she appreciated this time to say hello and goodbye to her friend Rae, a no-nonsense, freethinking woman she admired in case Rae didn’t live until her next visit.

Near the end of her stay I followed through on my promise to phone another dear friend and neighbor of my Mom’s, Rick, and tell him he could join us at the hospital. (I first wanted my alone time with my Mom.) Rae has, over the past couple of years, they would both playfully admit, adopted Rick as her third son. They both benefit from an obvious love between them: he has found an adoptive mother who accepts him completely, and she, living in Sonoma county, has an attentive son who lives nearer by than me (in Marin) and my brother (in SF).

I told Rick that Karen and I would be here in the hospital with my Mom and he said he’d come right over, maybe bring along his grandmother (who later decided not to visit).

I used my alone time today, from about 3:30 to 4:30pm, before Cecilia or Karen arrived, to apply my friend Greg’s advice from this morning. He suggested speaking to my Mom alone, saying whatever I needed and wanted to say to this woman who brought me into the world. I’ve done this many times before already, but it felt right to do again now. This could be my last chance to do so.

I told my Mom I loved her; that I knew she loved me completely; that she was a great, loving, devoted mother to me for all my life, both when I was young and even today as a grown man; that I had felt this, even when I had to break away from her as a teen and we had our share of conflicts, always overshadowed by her bigger conflicts with my brother; that I consider her, and always have, even as a teen, a strong, decent woman I admire for traits including her unfailing honesty. She was incapable of guile or of bullshitting. She could certainly be blunt, but she would never, ever lie. By contrast, I learned the habits of the “pleaser” as a child and can still catch myself being “nice” rather than honest. Rae has less of this conditioning and I can still learn from her to this day.

And did I mention enough times that she has always loved me unwaveringly and unconditionally all my life, that I not once doubted this? How many children can say this, I wonder? How can this gift ever be fully measured? I don’t know that anyone else has been this way with me, nor ever will again. I even know, thanks to her aforementioned honesty and straightforwardness, that she wanted babies from the get-go while my Dad was, like me today at 48, not keen on having children and the accompanying responsibility. (He was and still is a great, loving and devoted father to me but to this day has trouble believing this because his own guilt about leaving during their separation blocks his view.) My Mom went ahead and got pregnant because she was going to have kids and nothing, not even her husband, was going to stop her. I owe my existence to my Mom by many counts.

I put in a request at the nurse’s station to call Dr. K to our room, #32. Fifteen minutes later he still hadn’t come so I went back out and found him on the phone at the nurse’s station, talking about another patient. I wrote and quietly slipped a note in front of him, trusting he’d read it and respond when he could: “My sister-in-law Karen and I are with my Mom now and would like to speak with you as soon as you’re able. – Jack”

I went back to the room, and Cecilia said goodbye. A few minutes later Dr. K came in and joined Karen and me. This all played out like a carefully blocked stage play, exits and entrances neatly dovetailed in a way I would only appreciate more fully afterwards. In retrospect, I see how the evening’s events were choreographed so each person was present for just what he or she needed, whether or not it was wanted. I’ll say more about this later because it points to something mysterious and remarkable.

Dr. K again stood near the foot of Rae’s bed, as he had the night before, with his back near the wall of the narrow 12’x20’, wonderfully private room Petaluma Valley Hospital had graciously given us. Now only Karen and Rae and me were his audience. I told him again where I hoped we were with my Mom, but that I was more open to being convinced, after another night and day of observation, that she was not recovering. He told me for the second time in two days his differing opinion: that my mother was dying. This is, he gently maintained, what dying can look like: her rapid and shallow breathing and her body laboring to do so, different from how she breathed with pneumonia earlier in her struggle.

“What do I know about dying?,” I thought. I have never seen anyone die. I can count, precisely, the number of dead people I have seen in my life—just three—and know who they were, in chronological order. The first was my maternal grandmother, Rae’s mother, Ida. I was six or seven and I remember most my mother and her family crying in the front row of the service with the open casket I was allowed to look into if I wanted. Apparently even at that age I was curious enough to risk whatever shock some people experience, and my mother, as always, had a lovingly loose leash on me and trusted me to know my own limits. Dr. K, and most doctors, have seen a lot more dead and dying people, and know a lot more about it than I do.

We spoke for about 10 minutes, this directly and calmly. I, and Karen too, came out the other side convinced that his experience correctly informed his opinion here. And then he admitted that, despite my wishes for no morphine to be given my Mom, he had given her some. After seeing her earlier this day and speaking with other hospital staff including nurses, he determined that she was struggling hard and that it was right to give her a small dose of morphine as a painkiller and muscle relaxant.

Ordinarily I would have erupted at this news. I expressly said I did not want her given this or any powerful narcotic that would knock down her consciousness further than it already was unless she was clearly in pain. But he volunteered this disclosure now, he did so without prompting, she was no longer reacting the pain of a needle piercing her skin, and how Karen and I and Andy yesterday experienced my Mom, and because she had not only not inched forward in her recovery but had declined, all told me he did the right thing. I was coming to accept his view of my Mom’s situation. I can’t fully account for my shift here, perhaps I just finally integrated all the bits of information with my own emotional journey, over time, and my experience of her today. I also realized this is surely a familiar phenomenon in hospitals, family slowly coming to accept what staff can see more plainly from a distance: your loved one is not going to recover. The trouble is, our family already experienced an exception to the medical numbers: my brother’s miraculous recovery from death’s door after almost a month in a coma. No doctor—just some of the amazing ICU nurses—considered it likely. I was like the man I met on my first trip to a U.S. casino, in Atlantic City, NJ. He told me his own first visit casino visit as a teen, in which he won big, was the worst thing that could have happened to him. He, like us with Andy, got emotionally wired for great outcomes.

I don’t trust doctors as a rule, as I think more people in previous American generations used to, but I just KNEW in my gut this doctor was not trying to end my Mom’s life sooner for the hospital’s convenience. I felt before and still feel now he is a decent man and I trust him. How DO we come to our opinions about other people? Increasingly, I trust my instincts and intuitions.

I’ve been forced—okay, I volunteered—to practice, for the second time, the painful art being a patient advocate. I can’t imagine being an inpatient without a trusted advocate, because hospitals are a terrible place to get well, as even hospital workers freely admit. And of course many lives get saved in hospitals. Go figure. Instead of surrendering the decision making to doctors, I have them inform me, or better yet US, so I, better yet WE, can choose what’s best for my disabled Mom. A couple of weeks ago another doctor suggested morphine to “comfort” my Mom, and I knew this was wrong to do, that she was not done fighting for her life. My mother is so completely vulnerable to the effects of my decisions; just as vulnerable I was to her choices when I was a baby.

Karen—thank you Karen for being clear and discerning and here with me now—and I now agreed with Dr. K. We chose a new course of action based on Dr. K’s opinion. From what he’s seen over Rae’s three days here, and from seeing others in this condition, my Mom would likely not live through this night. We made the transition; we okayed his suggestion to send in a nurse to remove the IV drip, the nutrient drip and the antibiotic for her urinary tract infection. We would remove all the machinery that has been sustaining her for weeks; unhook her from machines she had said at the outset she did not want to live hooked up to.

This was always clear, for Rae and for us, but what about hooking someone up to machines temporarily to make a recovery? Is this different? And how long is temporarily, anyway? And for that matter who tells his family (and how), with eyes closed and full consciousness diminished, “Yes, I want to live hooked up to machines?”

While digesting Dr. K’s guess that this could be my Mom’s last night, I moved my chair closer to her bedside, near her head that was turned toward her right side where I was seated. I agonized for another minute on one other matter: should I remove the constrictive oxygen mask that was giving my Mom more 02 than was in the room air? I asked Karen her opinion about it and she (wisely?) offered none. The room had perfectly adequate 02 for Karen and me and any healthy person. I decided I would take it off so I could much better see my Mom’s face and if it made any difference to her. I could always put it back on. I wonder now if you reading this consider this action incidental or monumental. What would you do? If we were all wrong, if my Mom still had life in her, simply dialing down her oxygen to room levels wouldn’t kill her. And if it did kill her, I would know just how perilously close to the end of her life she really was. I simply have no experience with this situation with which to judge. Mom, I’m not trying to kill you! I’m still completely open to your making a miraculous recovery, setting a Bay Area record for the family with the greatest number of people who made it back from the brink of death.

It was 5:45pm. (I know this from my cell phone’s call log.) Before the nurse arrived, I called Amy to tell her what was happening, that I was going to stay at the hospital a few more hours—on “death watch”—then decide whether to stay longer. Amy asked me again if I wanted her there to support me and I said no. I told her the truth, that I didn’t need her there. “Come only if you need to be here for you.” She did not; it was too painful. I confirmed with Karen that Andy had had enough; that he had said his goodbyes to Rae yesterday. I was and remain clear that people should be free to choose how much of these kinds of experiences they want and can handle. Then of course life presents you what it does.

I had an insight earlier today about this. If I was destined to be at my mother’s bedside for her death—something I have always thought I wanted to do, for my Mom as well as because of my own curiosity about death—then it would happen. If it was not meant to be, no effort on my part could make it happen. Meaning if I wasn’t fated to be a witness I could sit on a death watch for days and then she would die while I was on a 20-second pee break.

I realize I used to struggle with this question of how much control we have over events in our lives, decades ago, when rushing for the subway in NYC. Logically, the sooner and therefore longer I’m on the platform, the more likely I’d catch my train to work. Therefore I should run down the streets and get to the station ASAP, Jack. But after running my ass off numerous times, flying down the steps, through the turnstile, sweaty and stressed out—I often missed a train by one second. So I wondered maybe if I’m meant to make the train, I’ll make it; if I’m not, I won’t. I had the thought so completely insane for a born-and-bred New Yorker, it probably marked me for future deportment to California: Relax. Have a little trust that life will lead me where I need to be. A simple behavioral difference on the outside I could still only occasionally put into practice—slowing down, the result of a completely different philosophy for life on the inside.

I took my Mom’s oxygen mask off and laid it aside. Now I could see her face clearly even though the elastic straps left marks on her cheeks. I thought the chilling thought again: am I killing my Mom? Or as we say with those we love, euthanizing her? Am I performing a milder version of the mercy killings depicted in the endings of Clint Eastwood’s film, “Million Dollar Baby” and Milos Forman’s “One Flew Over the Cuckoo’s Nest?” I know for sure my Mom does not want to live unconscious in a hospital bed, so just put her out of her misery.

Again I answered this worry with the knowledge that if merely reducing her oxygen intake a few percentage points was enough to kill her, then indeed she was hanging by a thread. Doing this would not have killed her during any of the past four weeks of her hospitalization, I could always put the oxygen mask back on, and nurses had yet to unhook her drips.

I can’t recall the exact order of events from here. I want to remember what happened, and writing helps me do so, but I know that whatever I write will become the story I forever remember. Such is the nature of writing, or the nature of trying to recreate any event that no longer exists; it lives in just one moment and then is gone forever. The rest, including this journal, are only mental re-creations, a phantom world of the mind, relegated always and only to past and future fantasies. Of course, I spend a lot of time in the past and the future; “Lost,” as one of my teachers puts it, “in the world of the mind.”

My Mom’s breathing changed. At the end of about every fifth short, quick breath she would exhale heavily and then pause…no in-breath following…no more breathing…My first gut reaction to this change, making no logical sense, was that she was intentionally expelling more air, more life force, willingly pushing the air—her very life—out of her body. She was getting on with this, intentionally pushing toward death. My rational analysis kicked in and said she can’t possibly be doing this consciously; her consciousness is too suppressed and unavailable to communicate with me or anyone through her body’s movements or speech, completely absent these past three days in Petaluma.

The nurses came in and unhooked her IVs, quietly, quickly, and respectfully. They gently asked Karen and me if we wanted anything to drink. We each already had a coffee from before, had set them aside, had no interest in food or drink. I asked for water, which they brought a minute later. They left and again pulled the door shut to our private room to leave us alone for the night. I later realized they have performed this service before.

I stayed at my Mom’s bedside and reached over the railing to touch her hands and arm and forehead. Only her left eye was open a crack. I gently pulled each eye open to see if I could make contact with her. No more neuro exams now, I was looking for eye-to-eye connection if any was still possible. I can often sense a semi-conscious person’s degree of awareness this way. I met only a blank stare from my mother’s eyes. Her left pupil was noticeably more dilated than her right, a sign I was told earlier of likely brain dysfunction. Her breathing continued with its several breaths, short and shallow, followed by the big exhale, followed by the new long, chilling pause…will there be a terminal breath? Is that what this is leading to? I’ve never seen this before, and I assume they vary, so how could I know? Is this really happening? Is this my Mom dying? Am I really here to be a witness, as Karen is witnessing from her position off the corner of the foot of my Mom’s bed?

Seems to me that many of life’s big, dramatic or traumatic events—births, deaths, marriages, car crashes, skydives—have a surreal, “Oh, wow, is this really happening?” quality to them. This is accompanied by a simultaneous, automatic attempt to match the experience in the moment to its preconceived image. The image is created by hundreds or thousands of past attempts to envision this future event, finally happening in the present moment. Is this what my Mom’s death is really like, now that I’m here for it in a ringside seat?

I talked to her now, told her again it was still her call, that if she wanted to live we’d love to have her back, but if she was ready to go, then I could let her go. Her breathing, after several more minutes, began to lessen, diminish in intensity. What?! Maybe only 10 or 15 minutes had elapsed. Could this be happening so quickly? Yes, it was, and now I knew it with certainty. I wondered if I would flinch or recoil or just couldn’t handle what was happening. I checked inward emotionally.

In a flash I remembered, as I have for decades now, that when my Dad left our house—my parents separated when I was 11—my mother sometimes sobbed in the middle of the night. If I couldn’t escape the sound of her pained crying, so excrutiatingly painful to me, I would go into her room, trying to ease her pain and my own, willingly taking on the roll of comforter and caregiver, in those minutes switching roles with my caregiver. I had the pure intentions of a child, motivated by love, who would do anything to ease my mother’s suffering. Looking back on this, I see a beauty, a poetry in the act, a child willing to be there for his mother, two beings in a mutual relationship of love and support trading places. I’ve also learned that I, like any child, simultaneously needed to save her so she would survive and keep loving me. This was one of my formative childhood experiences, both poignant and cripplingly painful and to be repeated, training into me behavior that would serve me well in this life, used to being with suffering people, their injuries, their needs.

Flash forward 37 years and I am again at my mother’s bedside. I am again the son aiding my beloved Mom, but also now a gentle adult man with all this self-awareness flashing and my love for my mother welling in me. And more: there is also a joy for the sweetness of my own love filling in me in this powerful, once-only life experience.

After another perhaps 10 minutes, her breathing downshifted again, becoming steadily weaker. Holy shit, she really is dying. I have no doubt. I look up and over to Karen, thinking: do you see this? She is crying and I can’t remember the last time I’ve seen Karen cry. She is more private in showing her emotions than I am. She is resilient when she has to be, just like my Mom. I’ve always believed this is one reason my brother chose her as his life partner, whether he would say this or not, whether he would concede a causal link, knows it consciously or not.

I am crying now too, of course, as I watch my mother relaxing her body, not working so hard with her chest to push air in and out. Her breathing is continuing to diminish, becoming more soft and gentle. I know I have very little time with my Mom in this current state. I move closer and stroke her head and her cheek, as she has done a thousand times to me when I was young. She would comfort me at my bedside when I was sick, never concerned about getting sick herself, or just to say goodnight.

I told her in a softer voice, managed through my own gentle sobbing, “It’s was okay to go now, Mom.” “It’s okay, it’s okay, it’s okay to go.” I was whispering now. “Be at peace.” And, “I’ll be okay. I’ll miss you but I can handle this, I want you to be with your mother now, be with Ida.” (Before she lost her ability to speak she would occasionally be talking to Ida, her mother and the only grandparent I met. In a video recording from four weeks ago she says if she ever prays to anyone, it was Ida.)

And I suddenly heard myself whisper: “I love you Rae-ala.” Rae-ala is her childhood name for herself, the little one living inside my Mom, just as inside me there lives, even now, simultaneously now, little Jackie, the innocent child who wants only to love and be loved, who comforted my Mom when she needed comforting. I kept saying these things to her, loving my Mom with words, my fingers stroking her cheek and forehead, so aware these were the last moments I would be able to touch her warm skin.

I closed my eyes for a moment, rather than watch, not because I was afraid to see, but because I wanted to fully experience this and wondered if my focus on using sight, a photographer’s habit, born and bred into me, the son of two photographers, was distracting me from more subtle perceptions that might now be possible. Nothing. I opened my eyes again and looked and looked, wanting to take in all I could: all the life, all the death. This was soft and sweet and tender and breaking my heart open. My mother’s breathing continued to diminish, becoming fainter and fainter, dissolving into nothing. Any minute, any moment, and I knew her breathing would stop.

So soon after I removed her oxygen mask, my mother, dear friend and biggest fan, woman who pretty much didn’t ever—or couldn’t ever—stop talking and whom I loved with all my heart, stopped breathing. She was dead. I kept lightly touching her head and kept talking to her gently, sweetly. Her body remained warm for the next hour and a half I remained in the room with her and Karen. There was a sweetness in the space, warmed by our hearts and hers. Karen spoke to this, another student of the mysteries of life and death and life beyond what our five senses perceive. She reminded me something I’ve read before, that a soul often lingers near the body for a time. I’ve read and heard accounts of people perceiving wondrous visions and sensations in this setting. No matter how I might long for this, no such things happened for me now.

In just one minute, or perhaps two, Rick walked in the room. I was at my mother’s bedside crying, but the timing of his entrance immediately struck a chord. He just missed her death, like in a bad stage play I’d critique for its cliché timing. He didn’t realize at first what had happened, that she was gone. When Karen told him, he lost it. He demonstrated his love for her in his way—by being angry, by wanting her back. He was not yet ready to let her go.

The timing was just too close. Rae, I’m convinced, did not wait for Rick because he would have pulled at her to hold on, or he simply would have been in great pain, refusing to lose another loved one. This was not his first experience with death and great loss. I contrast his life experience with mine; at age 48, this is the first time I’ve lost someone so intimately involved in my life, that I knew so well for so long. And I was also ready to let go of her at the end.

All the people who wanted to be in the room for Rae’s death were present. Just as significantly, all the people who did NOT want to be present for her death were not suddenly caught in the experience. The next day Cecilia called to ask about Rae and I told her Rae had died only 30 minutes after she left the room. She replied, “I guess she didn’t want me there.” “Did you want to be there?,” I asked? “No, not really,” she hesitatingly admitted, not wanting to hurt my feelings, I guessed. She added that Rae’s labored breathing reminded her of another loved one in his last moments and it was just too upsetting. And so it was orchestrated. My Amy would have been there for me if I had asked her to, but didn’t need to be there for herself.

I’ve read about this phenomenon before, what I’m calling “orchestration,” most recently in Bernie Siegal’s “Love, Medicine and Miracles.” In fact, of all the pages I could have read about later this night when I was ready for bed, I found Siegal’s words on this topic. The dying have unusual access and ability to coordinate and affect events in ways we would assume impossible because they are in such a weakened physical state. But this last night, the orchestration was just too perfect. I also know I won’t convince anyone who doesn’t want to believe such things, nor would I try.

I moved away from my Mom’s bed, to the back corner of the room near the window, leaving physical and psychic space for Rick to grieve at her bed. I called Amy to tell her my Mom had died. The cell phone call log later showed I called at 6:08pm. Jusdt 23 minutes after my first call to her. This means my mother died in about 20 minutes from the time I removed her oxygen mask.

Today, like all my days at my country house with Amy, I will put birdseed in our bird feeders, just like my Mom did all her life at her houses, and I’ll think about her. I’m more touchy-feely about birds than she was, and most everything else too, but she’s the first birder I knew. She taught me how to use a bird guide, binoculars, to identify chickadees, nuthatches, cardinals, blue jays, downy and hairy woodpeckers and so on, and to appreciate their visits. Later I’ll walk with a friend into the acres of woods our house sits at the edge of, and think of my Mom here too. She’s also the first nature lover I ever knew, a dirt worshiper before this phrase appeared on Bay Area bumper stickers. She has given me so much. She was there, loving me, for my very first breath of this life and I was there, loving her, for her last.

- Jack Gescheidt, Oct 2008

Rae Russel (my Mom)
Born May 16, 1925
Died Oct 17, 2008

Saturday, October 18, 2008

Dear fans of Rae Russel (my Mom),

I have sad news today. My mother died last night, Thursday, October 16, 2008, around 6pm at Petaluma Valley Hospital. My sister-in-law Karen, devoted to my Mom, and I were both with Rae before and during this time. She died peacefully, without pain, and with great love and many tears in the room.

Although she didn’t make it out of the hospital and back to her house just one mile down McDowell Blvd. in her adoptive California home town of Petaluma, as she and we all wanted, her dear friends Cecilia and Rick got to say goodbye, as did Andy (Rae’s first son and my brother) on Wednesday, the day before.

How you receive this news is up to you. I’m enjoying the stillness and relative quiet I feel, in between waves of sweet and gentle grief. (I may not answer the phone for a while as I go in and out of wanting to do all there is to do.) I see that I can tell a happy story about all this, or a sad one: the sad story is she opted for elective surgery over a month ago, to get more time awake and alert at home among friends and she never recovered to enjoy this. The happy story is we all said said goodbye before her surgery and she didn’t slowly die over months or even years, as many people do from cancers, brain or otherwise. We “kept her alive on machines,” something she expressly did not want—but who does?—only long enough to know with certainty she could not recover.

I’ve written a much longer account of last night, a very powerful and emotional experience for me, that I may post in the future as it feels right. I thank all of you for keeping my Mom, Rae Russel—strong and feisty and honest and straight talking, pretty much endlessly talking, in fact—In your hearts during this time. I see no reason why this shouldn’t continue.

Last night I got even greater clarity about how much I loved her and how lucky I was to have her as my mother.
We know we’ll have a memorial service in the near future in Petaluma, we don’t yet know when.

With love and appreciation,

Jack (still not Jack "Russel") Gescheidt

Thursday, October 16, 2008

Dear family and friends,

Jack here with an update about my Mom, Rae Russel. The would-be writer in me wants to go on about yesterday’s dramatic events, but since today’s events are tumbling forward, I’m off to the hospital and will be mercifully brief.

Rae did well earlier this week with her last (third and minor) surgery to put a GI-tube, a “peg” in. Now she can keep the irritating nasal feeding tube out. On Tuesday she was shipped from Kaiser Terra Linda (San Rafael) back to her rehab facility in Petaluma. The very next day, yesterday, she was struggling again, breathing heavily and running a temperature. Since the care at a rehab facility is not as thorough at a hospital they chose to call an ambulance—and get my Mom back into a hospital. (Laymen Karen and I were there and we agreed.) Petaluma’s Fire Dept. squad of paramedics arrived dramatically, packed Rae up and got her in their ambulance. Next step: decide WHICH hospital to transport her to; either back to Terra Linda (35 min. away), or nearby Petaluma Valley Hospital (PVH) (8 min. away), though PVH is not a Kaiser (medical group) facility. (Meaning she’d be new to them and we’ll have delays getting needed medical history and records.) Quick—what would YOU advocate for?…

Decision made: stay in Petaluma rather than risk a longer ride.

Flash forward: once there though, in the Emergency Room, docs new to Rae must assess her from the ground up (with our help) and determine the cause of this most recent distress and then a treatment. Two hours go by, and that’s a hunk of tale I’ll leave out.

Flash forward, past the (my) doubt and fear and, most challenging of all, the not-knowing. Add drama and worry and some tears. Leave aside as best you can (because we have) the anger over why she was transported out of Kaiser’s Terra Linda hospital in the first place just the day before. Come out the other side, to last night, with a(nother brain) CT scan and another round of blood and urine tests.

I must note that the doctors and nurses last night, and in this realm in general, are ordinary human beings who act extraordinarily. For instance, as the ER doctor talks with us to determine my Mom’s malady and a treatment, I realize he’s doing many things at once. He’s not simply assessing Rae as best he can, he’s also assessing our (mine and Karen’s) emotional states and determining how this affects the information we’re giving him. He’s also delicately giving us options for the amount of care we will authorize him to dispense. From his point of view, he’s just been delivered an 83-year-old woman who’s obviously sick and likely on the way out. Of course that’s not our point of view, or perhaps it’s more accurate to say that’s only one of our points of view.

caringly around us visitors who are under great stress. Drum roll please: my Mom now has a urinary track infection (UTI for those working in these settings). With this comes high heart rate (108 bpm) and fever of 104. I’d feel shitty with this and I’m 48, not 83. And I’ve not been in a hospital bed for over a month (last Monday was four weeks since the first surgery).

She received great care last night. She seemed to stabilize. Her heart rate dropped to 100; high but better than meteoric. Upon our insistent request she was NOT transported back to Kaiser’s Terra Linda hospital, but left overnight in Petaluma to fight her fight.

The really big questions we struggle most with are: What do you want us to do, Mom? How much help do you want here? After a month of struggling to get out of the hospital, with so many ups and downs,

And my favorite: Won’t you please just tell us whether you’re still in this fight to live, or whether you’ve had enough. We can only guess the answers. If my Mom does want to let go, then why is she still fighting mightily to stay alive? Is this just her strong body acting on instinct, staying alive at all costs by habit? My mother is nothing if not strong-willed; if she wanted to check out, she would have already.

I went home last night, got some food, hung out with my gal and then got some sleep. I woke to messages that today, Thursday, she is “not doing well.” Meaning her heart rate is still high, though her fever is done to 101. I don’t even know if this is an improvement or a decline. The numbers don’t tell me as much as I quickly assess from being at her bedside. So I’m off to the hospital, feeling more and more like she’s NOT going to make it.

And that’s not the worst of it, really it’s not. Rae is 83 and went into the hospital saying, “If I die on the (operating) table, it’s okay; I’ve had a good life.” I’m getting a crash course in end-of-life dramas that lay ahead for most of us, either with our parents or for ourselves. Our kind neurologist Dr. McCarthy, still available to us by phone because he cares, has explained the meaninglessness of the common term, “no extraordinary measures.” Isn’t what Rae is going through right now “extraordinary?” She’s getting food and liquids and oxygen and meds pumped into her, urine pumped out. She wasn’t able to talk yesterday. Is this ordinary? Each time she takes a turn for the worse like this, staff asks us, as they must, what degree of care (“comfort” and “palliative”) do we want to provide?

My immediate response is to pull out all her tubes and wheel her out onto the surrounding lawns with their sprinklers running, birds chirping and sun shining to allow her a few final minutes in the nature she loves as much as I do becomes increasingly tempting, however crazy. No wonder the “steal the corpse scene in “Little Miss Sunshine” had such appeal.

I’ll meet Andy at the hospital today, and report back in later.

My only request is to think of my Mom today and wish her well, whatever her choice.

With love,
Jack

It ain't over 'til it's over...

...and it ain't over yet. Is that statement indicating a good result with your Mom, Jack, or a bad one? That’s a good question. And the only one who might answer us isn’t saying yet. I sure don’t know. And my Mom (Rae Russel) isn’t telling either. She can talk only a bit, low and through congestion, but her eyes are open and clear. The picture with this posting was taken yesterday, Wednesday (10.8).

So what’s new? I’ll make this mercifully brief as I could easily write 2000 words on this one issue: She goes in for yet another operation today or tomorrow. And that just sucks.

The Good News is it’s not, I repeat, NOT, another tumor-removing (#1) or clot-removing (#2) brain surgery. #3 is instead a simple “surgical procedure” to put a feeding tube into her stomach.

Parenthetically, market research reveals the word “operation” is upsetting to people. As is use of the word “drill” in a dentist’s office. So we simply change words. Operation become “procedure.” Pain becomes “discomfort.” Drill becomes “instrument.” Bush became President. Problem solved. You know the Orwellian drill.

This next “procedure” will put a tube into her stomach (aka, a “peg”). Then they don’t have to put the nasal tube back in, the one that’s been feeding her through her nose because my Mom still isn’t eating on her own yet. The tube was clogged yesterday and so was removed. That’s the photo you see with this post. Not only does a nasal line clog easily, and make meds delivery harder, it eventually causes nose and/or throat irritations and infections. Re-insertion is painful and distressing to our heroine, Rae Russel.
A nasal/throat line also becomes increasingly uncomfortable as my Mom continues to (gradually it seems) wake up. She IS regaining fuller consciousness, really she is, it’s just frustratingly slow.


The Bad News is she will go under anesthesia again, and then endure another (minor body, not major head) surgery. Not good. We hate whacking her consciousness down when it’s MORE consciousness we’re after. And any surgery is of course another trauma to her already tired 83-year-old body. And as I keep noting, just being in a hospital bed for a month could kill a moose. My Mom is apparently tougher than a moose—but you all know that.

As happens in hospitals—and we don’t mean jut with our family; there are many other families in their own battles there—you are often given the choice between lousy and terrible and left to determine which is which without patient (that’s my Mom) input. On the whole I’d rather be vacationing in downtown Detroit.

Some more Good News, though you may notice I’m slow in getting to it: she is awake more often now. Yesterday her eyes were open and clear and her breathing relaxed for about 3.5 of the 5 hours I was there. She is making progress, but it’s just—did I say this yet?—so slow. We noted yesterday in another meeting with our wonderful neurologist, Dr. McCarthy, that we began this ride expecting a speedy recovery from brain surgery and have shifted, it seems, to the unpleasant (meaning I don’t want it) slower trajectory of a brain trauma healing we know only too well, thanks to Andy. As I’ve reported before, Karen and I keep likening Rae’s healing to Andy’s slow recovery from his brain trauma years ago. But Andy, as I’ve noted before, was 40 then, and Rae Russel is 83. Guess which brain, and which body, heals faster in doctor-tested, clinically-proven trials?

How interesting to have Andy switch sides with Rae on this one. He’s on our side of the net for this tournament.

If all goes well—and here’s the hoping, praying, well-wishing job where you come in—she’ll recover from the GI tube insertion “procedure” in just 2 or 3 days—and then can be transferred out of her San Rafael hospital. We hope to move her 15 miles north, to the Petaluma rehab facility she was in before her first surgery. This puts her back in her home town and closer to dear friends and neighbors like Rick and Cecilia and her dog Nellie, a healing love triangle with my Mom in the middle.

Wish her luck!

With love,
Jack (no, not Russel, that’s her maiden name) Gescheidt

Rae is waking up!

Friday, October 3, 2008

Hello friends of Rae Russel (my Mom),

I just got back from the hospital this afternoon and it’s official: Rae is indeed and absolutely recovering: Her eyes are now as often open as closed and although she’s not talking up her old familiar storm, we are confident she soon will in the days or at most weeks ahead.

Her condition over two weeks after surgery, while unexpected, is familiar terrain for our family, having been through (my brother) Andy’s brain trauma a decade ago. We see the small neurological improvements and know their significance more quickly than many doctors. And of course the angels who care for Rae (aka, “nurses”) see them too since they spend by far the most time caring for her, 24/7, usually in three 8-hr shifts.

And her breathing is no longer labored. And she can cough up phlegm on her own (sorry, but you asked, didn’t you sort of?). Which means more of her energy is now going to healing her brain, instead of being diverted to cleaning congestion in her lungs. You’ve all heard, and I hope don’t know personally, that hospital stays are bad for your health, brutal on the body. My Mom’s weeklong pneumonia is but one grim example.

My Mom’s progress is all Good News, and I keep thinking I should be reveling in it, yet I don’t fully (and won’t fake it either).

I’d bet, and so would my sister-in-law Karen who’s been here in these hospital trenches, that Rae Russel is going to survive this experience and think again and talk again, and live longer than if she had NOT opted for surgery to remove the tumor (that’s Stage 4 terminal Glioblastoma cancer folks).

But the reason I’m not dancing is there the reality of her situation, which I can call Bad News. We’re not confident she’ll walk again; she may not recover the use of her left arm and hand; and she’ll likely need 24-hr. care. We’re all getting used to these ideas, which takes time. Rae’s time to digest and accept or hate and wrestle with these facts has yet to begin. No one can say how my Mom will take all this hard news.

Will she be a trooper and deal with these big changes; be happy she’s around to gripe about them while sitting and talking and outside with her friends among flowers and rain and sunshine and birds? Or will she be pissed off and hate being more incapacitated, at age 83, than she’s been in 82 years? It’s easy to be philosophical about life being one poetic circle, that we both come into this world and go out in diapers, but it’s quite another to live it. Or so I’m told. If we’re lucky, we’ll all get our turn aging, too; won’t die of a heart attack in our fifties like an acquaintance of mine did last week. That’s if we’re lucky.

So I’m guilty not fully appreciating my Mom’s victorious healing this week. I’m leaping ahead to next week and beyond when we expect Rae to have healed enough to be shipped out of hospital and back into a nursing facility in Petaluma, just 2 miles from her house and closer to her friends. Last week, as she was unconscious after surgery, I would have paid handsomely to know she’d accomplish this feat. Oh how greedy I am…

I also keep thinking that if I were to show you some of the video footage I’ve taken with my point-and-shoot over the past weeks (easy to do in this forum), most of you, especially those not familiar with brain injury patients, would see today’s footage and think, as my dear father might put it, “She looks like death warmed over.” To which I’d reply, “Then you should see last week’s footage.”

As with all such assessments, it depends on your point of comparison. And isn’t this true of assessments for all of us? Feel old and tired today? Just wait 10 years. In fact you’ll never again be so beautifully young as you are right this moment.

Rae’s other son and my brother Andy will visit Rae tomorrow and likely will others will too. We all do enjoy sharing positive news for a change and today’s (and yesterday’s) certainly is.

Thank you all for holding Rae in your hearts—your love is working its magic.

Jack

Thursday, October 2nd, 2008

Rae’s friend Cecilia visited her Wednesday morning, before the rest of us troops arrived. All her life, my Mom’s energy has been highest first thing in the morning, just after sunrise. (Unless I’m camping, this is when I’m still asleep.) Cecilia was excited, and still was a day later, to see Rae’s eyes were open, and this was without the usual prompting from anyone. This is a small, huge, encouraging step.

She’s not only hanging in there but improving, too. But because I’m tired of all this, and impatient, and didn’t expect this sort of Spanish Inquisition (no one expects The Spanish Inquisition), I’m simultaneously thinking like some doctors: not wanting to give you all “false hope.” We—and by “we” I mean Rae—also have a long way to go yet, just to get back to where we started over two weeks, before the surgeries to remove her brain tumor. And then again—isn’t this confusing?—unlike the doctors I think, “Fuck it; what the hell do I have to lose? I might as well enjoy having hope and keep practicing being positive.”

From noon on, after her higher-energy mornings, she’s still mostly sleeping, she can only speak a few raspy, whispered words. Even a non-stop yakker like Rae will lose her voice if it’s not used in 16 days. And since she’s not awake she’s still being fed through a damned tube. Oh damned tube, I thank you for keeping my Mom alive. I wish I could find more humor—i.e., comic relief–in the tube and its attached bag ‘o liquid maltodextrin being the most effective diet plan of Rae’s life.

My brother Andy and sister-in-law Karen and our great neurologist Dr. McCarthy, all at the hospital Wednesday unanimously agree she’s improved, doing her best since her second surgery which removed clotted blood from her brain. Now she has more energy, her CT scans are clear, she’s having an easier time breathing and able to cough through the congestion still lingering in her lungs. When we rouse her to fuller—note, never full—consciousness, she aces the neuro exams, responding to “commands” like “show 2 fingers” and other “tests” we use to prove her brain is still functioning and even coming back on line.

Yet I can’t help wanting a BIG, DRAMATIC improvement like in the movies. You know the one. The heroine, comatose for 23 years opens her eyes and groggily says, “Oh…where am I?…Jack, Andy…is that you?…How long have I been out?…”

Oh if it only it were so. Well it ain’t.

Rae has proved she’s tough though, and not done with her life yet. A two weeks-plus hospitalization is tough on the body, yet she’s waking up, not slipping away, and to me this proves she wants to be in the game. If only she’d wake up more—“where am I?…”—she’d be so much more connected to us, and you, and then REALLY feel our pull to revive. It’s your choice to fight or not, but if you’re gonna do this, Ma, then let’s get it on.

And still I know she’ll do this in her own way, in her own time, and she could die today or tomorrow. I am learning from this: each time I step outside the hospital after visiting I feel the warmth of the sun on my face more fully. I smell the freshness of the open air compared with a building interior. I see more clearly trees swaying in the wind. I am more appreciative, in those first moments outside a building filled with people struggling to get up and out to where I walk effortlessly, for being alive and part of being alive on this Earth.

With love for it all,
Jack

We can't circle like this forever, Captain Russel; we'll run out of fuel!

Tuesday, September 30, 2008

As they say in the comic books “Aarrrggghhh!” No, she’s not getting worse, and, to quote Python, “She’s not dead yet.” But she can’t stay in her current holding pattern forever, no matter that she’s a tough old bird, 83 years old. My Mom, aka Rae Russel, is still in and out of her semi-consciousness, still struggling with a fever and congestion in her lungs. All this directs energy and healing away from her brain and this has to occur if she’s going to fully wake up and get herself headed toward home.

The longer she’s inert in bed, the greater the toll on her body and the longer her eventual physical rehab will be. So, here’s your mission gang, should you decide to accept it because it isn’t impossible: please keep sending her your psychic support.

I’ll keep posting photos of how she looked before surgery to remind and inspire you. All of us here agree, two warm-hearted doctors included, my Mom/Rae is fully capable of restoring herself if she gets out of the damned hospital that is taking its toll on her. (The same hospital helping keep her alive.)

Rae’s struggle in Kaiser Hospital Terra Linda (a small community in San Rafael, Marin county, 20 miles from my house) is both small and epic. While our massive financial institutions loudly fight to continue their high flying existence as we’ve know them, one old woman is quietly fighting for some extra time in her hometown on the ground in Petaluma with her friends and family.

I keep saying, including to my Mom in her bed: I’m ready to let her go ahead and die if that’s what’s she wants to do. Problem is (for me), the last I heard from her own mouth just two weeks ago, this wasn’t what she wanted. Before going in to have her brain tumor removed on Monday September 15 she said she wanted some more time.

So c’mon Rae, if this decision still stands, now’s the time to open your eyes, start talking more regularly above a mumble, and can get your ass outta there. Then you’ll have earned more interaction and endless yakking with your fans while rehabilitating your tired old body.

I could report more about medical details—meds, antibiotics, blood oxygen saturation levels and endlessly on—but frankly I don’t care (much) about them. The doctors reign here, the nurses dispense these goodies, and I focus on her will to live, her psychic survival and from this her physical strength to carry on. What’s hardest is the not-knowing. I can only tell myself this is one more (last?) lesson Rae is delivering, me doing all the talking at her bedside, she mostly just listening, a role reversal if ever there was one.

Please join me in pulling on her chain linking her to our realm of consciousness here on Earth, this crazy and fun existence. I know it’s ultimately her call, but if she’s going to make a grab for it, we’re here to help and cheer her on. Thanks for rooting for her, directly if you believe in such techniques as I do, or in whatever way works for you.

With love,
Jack

Saturday, September 27, 2008

Dear friends of Rae Russel (my Mom),

I was with her yesterday, Friday, 9.26, for four hours at Kaiser (hospital) Redwood City.  I made the effort to get there (30 miles south of SF) earlier, before 9am, when her energy level is much higher than in the afternoon.  When we visit in the afternoon she’s just sleeping, and it’s frustrating to hear the nurses report she opened her eyes earlier in the day before we were there.  I saw her Thursday too, but later in the day when she's much sleepier.

The Good News is she’s hanging in there, not getting worse and I say a LITTLE better in her awareness and awakeness.
The Bad News is we all agree we feel like we’re in a race against time: the longer she’s stuck in a hospital bed, the more her old body deteriorates.  Everyone knows lying inert in bed is awful on the body and means more rehab time when you finally get up.

More Good News is she was transferred yesterday, up from the farther away Redwood City hospital with its Neuro unit, back to San Rafael which is closer for most of us to visit.  Her condition is stable, she doesn't need any more neurosurgery, thank you.  Andy and Karen and I will see her around 11am today.  I'll report any big changes.

Her brain surgeries—one to remove the tumor, a second to stop the bleeding from the first—are behind her.  Her CT scans are, as they around here, "clear."  Only the unpredictable process of her brain healing and her body recuperating lay ahead.  This is certainly all still unknown and life threatening territory.  I’m able to be realistic and acknowledge a GOOD result here would be: my Mom wakes up, becomes able to converse with all her friends and family again—rather than just mumbling a few responses when we talk loudly and repeatedly to break through the fog she's in.   Then, once able to interact, having a year to live.  

We’ll take more, we’ll settle for less, but we're unanimous in not wanting her laying inert and only marginally responsive in a hospital bed.  We all know Rae wouldn’t want this either.  She rolled the dice and opted for surgery, to get more time than if the tumor were left intact in her head.

We are where we are, in some way a familiar feeling place to Andy’s coma experience a decade ago in some respects:  there is no reason she can’t recover, staring today.  And no cautious doctor, no person can predict what will happen (perhaps only Rae).  And also, one other respect: we're in consensus that your thoughts and prayers and well-wishing directed her way ABSOLUTELY HELP.

Thanks for being there and wishing her well.

With love,
Jack

Monday, September 22, 2008

Jack Gescheidt here. I’m in debt to all of you for keeping up your psychic well wishes—prayers and thoughts of healing—for my Mom, Rae Russel. Call them what you will, I believe that “thoughts are things” and these things make a difference. If you believe this too, please keep clicking your heels.

One week after a first surgery, she is stable and improving slowly. Our neurosurgeon, Dr. Clothing (Kleider), was, in my opinion, cautiously optimistic today. That’s just about jumping up and down on the table for a man well schooled in being analytical and not prone to emotional outbursts. (That’s MY job.)

He says the most recent CT scan TODAY shows the 2nd surgery last week was successful—did I tell you all she went back in this past Thursday (Sept. 18th) for a second craniotomy because of bleeding/clotting from the first?…Well for those of you who missed this snippet of news, she did.

So now the clotting that was delaying her recovery (and ability to talk and open her eyes) has been cleared. With a little bit more time she may recover to where she was (although the Dr., like me, is a little surprised she hasn’t recovered more fully already, the fourth day after her second surgery).

Despite knowing I “should be” grateful for what we have—Rae’s not only not dead, she IS improving—I’m also just impatient and tired of waiting for her to get through the discomfort of being asleep so much. And I do mean hers, not ours, because we knows she wants to be alive and kicking, not sleeping her time away in a hospital bed.

And I’d prefer to converse with her again rather than just talk at her while she mostly just lays there. For those who know Rae, don’t think I don’t appreciate this exquisite irony. My own impressive capacity for talk (and writing) can’t compete with the source, dear ol’ Mom. Our “conversations” are more often her talking non-stop, and me waiting to get a word in, or just giving up and meditating on the nature of irritation. Oh how I miss that now, want her to talk a blue streak like in the good old 7 days ago.

But she is tough and stubborn and even at 83 wants to live so I’ll be damned surprised if she quits on us now. She’s recovering from the trauma of surgery at her age, her brain healing to release her from a fog of semi-consciousness. Her eyes stay closed and she doesn’t speak unless spoken to vigorously, and then only a word or two. Those few words are evidence her mind is still functioning. Karen reminds me that Andy, at age 40, was exhausted from his trauma, and slept prodigiously for months, so why should double-brain surgery on an octogenarian be different, even without the coma?

What’s especially disheartening is my Mom is still far less conscious and sharp and communicative than when she rolled the dice last week and went ahead with surgery to remove her large terminal brain tumor. I realize I could say, “just one week,” too.

And fyi, the nature of these cancerous beasts (Google “Glioblastoma” and hold onto your hat) is that even removing one, as has been done here successfully, provides no clean bill of health nor long life. But the statistics suggest, having removed the bulk of it, she’ll get more months to live. That is, of course, if she survives the surgeries. You all know that joke: The surgery was a success but the patient died. I know there’s humor in there, I’m just trouble getting the laugh out it right now.

All this hospital effort is worthless if she’s not able to talk and connect with us the way she loves to. But indeed she can any day turn the corner, start a fast recovery from the debilitating effects of having the inside of her head examined, twice, in one week at age 83.

I simply ask for you to hope for this too. It’s powerful non-Western medicine, this “on a wing and a prayer” stuff so I write this email to ask you to envision more talk, all-talk, nonstop talk for my Mom, Rae Russel, too.

Speaking of which…unlike me—and I bet you too—my Mom loves talk radio (NPR and such) for—get this—lulling herself to sleep. She leaves it on all night, has done this for decades. It’s her way of taming her active mind. What would be torture for me, keeping me awake and irritated, is her balm to keep her sleeping soundly. Go figure. So we’ve set up her continuous National Petroleum Radio in her hospital room for mental stimulation. What would kill me in a hospital nourishes her. Oh, mysteries of life.

I was with her on Friday and Saturday in Kaiser’s Redwood City hospital (south of SF by 30 miles). Andy & Karen visited yesterday, Sunday. Of course I took photos and some video too, but plan to share these only as she recovers so we can, as with Andy’s journey a decade ago, show and enjoy the progress she’s made, rather than bemoan our current predicament. She is, after all, alive; the surgery was successful; she is receiving loving 24/7 care from nurses in her NOU unit (Neurological Observation Unit, not ICU).

Thanks for reading all this, and thank you for your thoughts of her and for her, through the ethers.

Impatiently, lovingly yours,
Jack Gescheidt

Wednesday, September 17, 2008

Hello friends of Rae Russel,

Jack Gescheidt here. I’ve waited to send this update because I’ve wanted to deliver good news. My Mom has had about as successful a surgery (on Monday, 9.15) to remove her brain tumor as can be expected. Meaning what was most a golf ball sized Glioblastoma (Google or Wikipedia that if you dare) has been largely removed. She hasn’t had any excessive bleeding or other possible complications. This week a biopsy will be performed on the removed tissue, which helps determine options for future radiation and chemotherapy, if Rae opts for further treatment in the weeks and months ahead. Do know that with this type of tumor, removing much of it is NOT a clean bill of health; it’s a cancer that will kill her, we just don’t know when. But isn’t that the way life works for everyone?

The predictions of how long she has to live are low for this type of tumor, so I instead choose to focus on the fact that all numbers are predictions based on past similar conditions. They can be quite accurate, or not. I’ve also been in the ICU trenches before (and she is in post-op care at Redwood City Kaiser, not ICU), and enjoyed the unlikely experience of beating long-shot odds.

I’m also constantly aware—and so can you be—that my Mom is happy with her 83+ years, already longer than she ever imagined she’d have. And her recent years living in good health and spirits in Petaluma have been, she keeps reporting, her happiest in her life. To paraphrase one of her pre-surgery perspective remarks, “If I die on the table, it’s okay.” Typical gutsy, plain-talking Rae.

The frustrating place we’re at currently: she’s recovering from surgery, but more slowly than we’d like. She’s mostly appears to be sleeping, but then you can talk with her and she answers. We are told this is just how post-surgical recovery can be for some people, esp. now that the general anesthesia is out of her system. They keep giving her tests (CT scans and an MRI today) to check for brain bleeds and other such nasty possible stuff, and so far all’s clear.

I look forward to reporting by week’s end that she is improving more quickly: livelier and able to use her fancy pants “Jitterbug” cell phone (designed esp. for oldsters) from her bed again. (Take note she’s not a big fan of gabbing by phone, cell or otherwise before this hospital stay.)

At that happy time I’ll report on her condition in more detail, and with info about where she’ll be moved, which we hope is back to her pre-op rehab facility in Petaluma, just 2 miles from her house.

We all know how determined my Mom is. She went into surgery for her tumor saying something like, “I want some more time, not five years, but another year if I can get it.”

I believe that this strong desire is one critical determinant for her healing or not.

For now, I ask you to keep her in your thoughts, your consciousness, your prayers; to keep her connected to this Earth plane (as we call it sometimes here in Marin).

I fed her applesauce on Monday, after her surgery, in tearful wonder and appreciation for how life works, orchestrating a role reversal for two souls. She used to patiently, lovingly feed me like this over 45 years ago, now I can do it for her.

Thanks for listening in on this and sending Rae your love.

With some sadness, some impatience, and a lot of love for my Mom,

Jack

Rae Russel (my mother) diagnosed with brain tumor

Tuesday, Sept 9, 2008
 
Dear friends and family,
 
I don’t really know how to convey all this properly, so I’ll just jump in and tell the tale.
 
My Mom, our very own Rae Russel, exhibited symptoms two weeks ago we THOUGHT were the result of another stroke, or series of mini-strokes.  This included losing use of much of the left side of her body; arm, leg and (left side of) mouth.
 
She CAN still think clearly and speak, though with somewhat slurred speech.  She is not in any pain.  She’s been in and out of the hospital.  As of Thursday, Sept. 4th, she is now in a quiet, clean, well-run rehab facility in Petaluma, about 2 miles from her house.
 
Hospital tests last week (CT scans and MRI) found a brain tumor, 4x5cm, on the right side of her brain.  (A photo of the tumor is attached to this email.)  The tumor is not malignant; she does not have cancer elsewhere in her body.  But it’s big and it is terminal.  The big question is not IF, but WHEN it will kill her.  The bell curve for living with this type of tumor — known as a Glioblastoma multiforme (GBM), common name Glioblastoma — is estimated at 3-6 months if left untreated.  Wikipedia link: http://en.wikipedia.org/wiki/Glioblastoma.
 
This estimate, like most such estimates, is based on documented previous cases and can be quite accurate.  And of course it can be quite wrong.  She could die in a month or live a year, or more. 
 
The next decision she will make—with our input and that of our kind-hearted neurosurgeon we are lucky to have—is whether to proceed with a biopsy.  This is a brain surgery to extract a tissue sample to determine what types of radiation and/or chemotherapy might be effective in reducing or removing the tumor.  The tumor’s location makes it unlikely to be operable/removable, yet once “inside,” they could attempt to reduce its mass if possible.
 
The statistics on radiation/chemo treatments, if all went well, show she could extend her life an additional year. Again I add all these predictions are averages on a bell curve.  She could die from complications from biopsy/surgery or following elective chemo/radiation, or successfully recover and live 1 or 2 or more years. 
 
We learned first hand with my brother’s Andy’s accident and coma and brain surgery nine years ago (!), no one can accurately predict what will happen.  Andy made a miraculous recovery.  My Mom is 83 as of May 2008, not 40 as Andy was.  Then again, she’s tough and wants to live.  (No doubt Andy or I could pretty much guarantee extending her life a year if either of us promised her a grandchild…and this would include if the Exxon Valdez ran aground over her rehab bed.)
 
Right now she’s requesting rest and peace and quiet, so she’s not making or receiving many phone calls.  And she's in good spirits considering what she's facing.  If you feel moved to write you can email me and I can print them out to bring to Rae, although so far she’s more into chatting with her therapists, nurses and neighbors than reading anything.  Same old Mom.  You can also simply, powerfully, just keep her in your minds, your hearts, your prayers.
 
For those who’ll ask how I’m doing: after the initial shock of learning she has a brain tumor that will kill her, I’m integrating this sadness into my daily life. 
 
I have several optimistic overlays on it too, all as true for me as the sad prospect of watching my mother die sooner rather than later:
 
1.  This is not, for me, a tragedy akin to family and friends who have succumbed to cancer in the middle of their lives.  It seems more the natural order of things.  83 or 84 or 85 is a good run at life, and my mother and I agree on this.  She has repeatedly said over the last 3-4 years living in Petaluma, CA, that she is happier than she’s ever been in her life, she has long outlived her own parents, longer than she ever expected to, and is thrilled to be living near and feeling connected to her two sons.  She has in recent years become increasingly grateful for the small pleasures of life.  She seems to have found/made some degree of peace in her life.
 
2.  Knowing she will very likely not live another 5 or 10 years—and I leave room for long shots—she can live life with this knowledge many people don’t receive.
 
3.  She is not in pain.  She is conscious, lucid and can communicate as she chooses.
 
I write this group note to be efficient with my time as I continue to have my own life, which I want to include other topics OTHER than this big one.  My life includes not only being available to help my Mom and spending time with her (just 20 miles away) in the months ahead, but also: time with my loving and supportive woman, Amy: time happily making people and TreeSpirit photographs; time being and aware and grateful for the tremendous richness of my life and the number of caring people I am blessed to call friends.
 
All of this will be informed by whatever happens next, the inevitable pain and the inevitable joys, and none of us knows what this will be.  And isn’t this true for everyone?
 
With love,
Jack