Day 299

Having a birthday without the woman who gave birth to you, is a confounding experience.

It's like a chill that creeps up your spine and raises your hairs on end. One of those emotions that does not shy from physical expression. A feeling that penetrates the body's very reflex engine. A multitude of tiny lightening bolts through your nerve endings that leaves your fingers cold and stiff. 

Not that it's an entirely negative experience, though we certainly associate it that way. "Someone just stepped over my grave," many recite at such a moment. Facing mortality is also facing eternity. All of that to say, I've had those chills all day. 

Day 293

It occurs to me that's it's been almost a year since Mom was first diagnosed. And though our count nears 300, it doesn't feel as though I've ticked those days away. It seems the wisest lesson on time comes to us through the immortal genius of Steve Martin as The Jerk:

The first day seemed like a week and the second day seemed like five days and the third day seemed like a week again and the fourth day seemed like eight days and the fifth day you went to see your mother and that seemed just like a day and then you came back and later on the sixth day, in then evening, when we saw each other, that started seeming like two days, so in the evening it seemed like two days spilling over into the next day and that started seeming like four days, so at the end of the sixth day on into the seventh day, it seemed like a total of five days. And the sixth day seemed like a week and a half. I have it written down, but I can show it to you tomorrow if you want to see it.

Mom & I loved that bit. In fact, that movie played a significant role in our upbringing, as did Arthur & Young Frankenstein.  We laughed our way through hard times. We learned those movies word for word. One of Mom's favorites was: 

Not everyone who drinks is a poet. Some of us drink because we're not poets.  

So, when I think back on coming home from the hospital with an NG tube in Mom's nose, which would not come out until the very end, a clunky pump, a lot more morphine and a slew of family and friends who knew the time was near, I'm searching for humor. I'm sure we buoyed each other up somehow. 

Instead, all I remember is my Aunt Terri who showed up one day and didn't leave. She took her vacation time and camped out at the Green Ranch. Home-made tortillas, juevos & chorizo found their way to the table, floorboards were cleaned, the backyard was hosed down, and most importantly, Mom was well tended. She sat with her in silence for hours on end. A post that became increasingly more difficult for me. We bought baby monitors to set about the house in order to keep tabs on mom when we were not in the room. 

Hospice immediately sent over a bed and oh yes, now I remember. We decorated her room in a Hawaiian theme. The guest room became a tropical explosion of orange fish & pink hibiscus blossoms with decorative Tiki lights accenting our picture wall. What must have been a hundred pictures of friends and family made a spiritually reviving wall of support and prayer. The only solemn additions to the room were that damn hospital bed and an oxygen tank. We didn't need it, not yet. Mom was still sleeping with the love of her life in her own bed in her own room and breathing on her own.  So, the hospice supplies simply stood sentinel awaiting her immanent diminishing.

Days, he said. Weeks maybe, not months. 

Joshua flew home from Vegas. 

Still we didn't talk of death. We only knew that the tube in mom's nose was keeping her with us and simultaneously depriving her of any and all nutrition. Food and drink became mere palliative companions. Like the skeleton in the dungeons of King Haggard's castle guarding the gate of the Red Bull and all the while lusting for an empty carafe of what he imagined was fine wine, she gulped down a ghostly promise of nourishment only to watch it sucked back out of her nose. 

More than any other time through this process, she looked less and less like herself. She could still move about with help, though she fought us off at every turn. Independent to the last. In fact, it should be noted if it has not yet, that not once did I witness an expression of resignation upon her face. She fought for her life. Though the battle was unjust, the odds impossible and the respite obsolete, yet she never gave up. 

I think it was then I started to crawl deeper inside of myself. Grief drew me into its womb and I nestled in the dark with thanks. I mined my youth for memories of her skirts spinning, the way she layered her lasagna, or how she flipped her hair when she knew she was right... which was always.

The first time the tube fell out, we did as we were told and went to the ER to get it put back in. If the tube pulls out of the stomach and can no longer do its job, we were told that only an RN could put it back. Like all ER visits, Aunt Terri, Mom & I sat about for hours waiting for an unnecessary x-ray and a replacement tube. We decided that the next time it fell out, we would just handle it ourselves. It turns out that the next time was right as we pulled in the driveway on the way home from the ER. 

So, I took hold of the tube and gently fed it into her nose as she swallowed. We got it back in, taped it up and tested it with the pump. Success. It was so successful in fact that I was designated to adjust the tube for all of its shifting. Each new adjustment didn't get easier. Quite the opposite. It became a painful reminder of my mother's lifeline. A reminder that she was starving. I hated that tube. Disdain. Vengeful disgust. 

We swabbed around her nose and tried to keep it lubed, but as we were repeatedly told by doctor's and hospice nurses, an NG tube has never been used over a long period of time for someone in this situation. As a result, her nose began to erode, which only added fuel to my spite. How could any righteous destiny decide to cover that resplendent face with bile tubing? 

I remember the last time I saw my mother in Seattle thinking even then that she would die looking nothing like herself. Forever my memory of her would be cluttered with her much altered appearance toward the end. This foresight is all the more potent these days. For what I didn't expect was what it would feel like to look in the mirror after she was gone. It is her face I see. Her expressions. Her aching furrowed brown when she cries, taking long deep gasps as she swallows her fear and exhales her courage. Her knowing smile.that puckers her soft lips as her right eyebrow slides up confidently. I am a whirling dervish swallowed in the cyclone of a greedy pursuit for her every expression and then plummeted into sorrow with the reality that it is me smiling back, not her. And then I see her crying. And around I go.

Perhaps someday her likeness will soothe my longing for her. But, today it only serves as a sharp reminder of what is lost.

Day 211

It was apparent that night, the night of her last chemo treatment, that we would need to take her to the hospital the next morning. We wheeled her right to her room and checked in from there. The doctor on call had reviewed her most recent imaging by the time we arrived. She explained that at first blush it was clear that the cancerous lesions had spread to her lungs and her lower bowel - essentially shutting down her digestive tract.

Somehow this was news to us. She, the doc, ordered new imaging and the insertion of an NG tube (Nasal-Gastric) - a 1/2" plastic tube inserted through the nostril and swallowed until it safely turns the corner into the esophagus and is pushed by the nursing assistants into the stomach opening in order to pump any blocked bile from her stomach and out through her nose. Let me make this clear... in my mother's case this tube is not used as a feeding tube, bur rather a tube to remove any food and liquid she consumes, essentially emptying her stomach.

Little did we know, this tube would become a permanent fixture. Even though the tube provided some instant relief from her hard, distended stomach, its discomfort would only increase over the coming weeks. We tracked down Dr. Pan who informed us that the day of our dreading had come. Any further treatment would only cause more harm. There was nothing more we could do. It was on this day my mother officially lost her battle with cancer.

How long?
Days, maybe weeks, not months.
And the tube?
It'll have to stay in. At this point, it's giving her more relief than she'll have without it. If we take it out, she will have to cease all intake and her only intake from now on will have to be fluid. But, her consumption is only palliative as it will promptly be pumped out of her stomach.
No nourishment?
No.

My chest tightened. It kept tightening. The wind was knocked out of me and was constricting with each passing moment. I was the white mouse coiled in the boa, breathing deeply only to find my air cut off by the ever-tightening serpentine realities of a losing battle. Dizzy. Panic. I found a dead end hallway. I kicked the walls. I sat on the jutting ledge of the emergency exit and heaved breaths, rose and sat again. No. No, this isn't right. This can't be right.

I saw my step-father approach. I watched the truth of the moment clutch his very being. Every nerve and capillary engaged in the fact of her immanent death. He imploded and crumbled like the razing of a skyscraper, all 6'5 of him cracked and fell and his skin surged with the reddening of his skin as his blood, his love gave out.

I called my brother. Joshua, it's time. You need to come out here. Get on a flight as soon as you can. I don't remember what else was said. I only know that he understood.

Did she understand? Did my mother know what all this meant? If she did, you couldn't see it on her face. In fact, her strength seemed so sure that I don't know what she believed at that moment. Dr. Pan came in to see her and asked as one might: How are you feeling? Great, was her response. With enthusiasm and a smile no less. He was visibly taken aback by her response. Always so positive, he said incredulously.

She was so strong that I reached for her for comfort. I fell onto her stomach with a heavy head and wept. Hard. Harder than I had in all this fight. Harder than I have in my days of heavy weeping. I poured it all onto her, because she was my mother. Who else could comfort me at this time. And so she did.

I felt, and can still feel, her hands in my hair. Stroking and holding me as she always had. I cried harder. She held me closer. Pressed me into her cancerous womb. Pressed me into the place of my beginning. The place of her ending. And I was greedy for it. Greedy for a consolation that would only be mine for days, maybe weeks, not months. I gave it all to her. I took it all from her.

Family started arriving. I heard my aunts before I saw them. The clop, clop, clop of a confident, determined woman walking heavily on a linoleum floor with heels toward the open wound of her beloved. I ran to the sound. I fell into the embrace. My knees gave out and my head nestled deeply into her neck.

You don't need to be strong anymore babygirl. You did everything you could. You did so good. Then she joined me in my desperate girlish grief. She breathed with me and lost her breath with me. This would be the first of many pressure releases we would expel together, my Tia and I.

When my cousins arrived, it was: Let's get out of here. You need to eat. We'll stop by the liquor store. So, we all piled into the van and before long there was Jameson & cheeseburgers. If you've never had the experience of being exactly who you are with people who know exactly who you are and you're held safely in their knowing and free to be exactly what you need to be at the hardest moment of you're life - then I wish that for you.

To scream.
To rant.
To start a fight and watch them finish it.
To be inappropriately funny.
To be caught as you collapse.
To get drunk and lose your mind.
To be distracted.
To face the fire with a family.

If you are alone, I ache for you. If you can, begin to build a family  now, before it's too late. No one should have to endure such loss without another empathetic soul.

We piled into the hospital room. No one dared approach with: only 2 at a time, please. Wine was opened. Dinner was passed around. We were 10, 11, 12 maybe. We huddled around our mother, sister, aunt, wife, friend. We circled her as if to thwart her death for at least that  moment. We brought life to her bedside. We joined our fires, considerable individually, and unconquerable united... or so we once believed.

Day 193

We kicked chemo's ass.

Mom swung like a rocket between the worst constipation of her life to the worst diarrhea of her life within days of each other. Sleepless nights on the couch in the quiet dark of the middle of the night, huddling, trembling under a blanket slipping into the dizzy hallucination of extreme physical distress, a nauseating weariness - that empty pit of your stomach kind of tired. Not wanting to keep John up with her urgent rushes to the toilet, not wanting to wake me for the help she desperately needed. 

When I came upstairs at 7am to check on her she was still caught in the manic cycle of her evening, still running desperately into the bathroom. I called the hospital right away and after a slew of questions, did you try this, did you try that, we got some gentle anti-diarrhea OTC meds, put her on heavy fluids and the B.R.A.T. diet right away (Bananas, Rice, Applesauce & Toast) and tried to get her to sleep. 

It was 2 days after the 3rd cycle of chemo. This can't go on, she said to me. If we can't fix this, I can't do this again. Her body began to calm down and she told me about her evening. Smirking she began: This house comes alive at night. It makes noises, weird noises. The shadows move around. It delighted her somehow. She saw the world differently, her home differently, herself differently. It's not often we're gifted with a sudden jolt in perspective and interaction with our everyday environs. When a meteor hits, there's no telling what kind of impact it can make. 

Any advance that severe usually comes in moments of severe duress, whether Olympian or cancer patient. For the few who can feast on the gifts of meteoric change in our lives, there is a treasure of immense power. At the risk of enabling my Jewish ken for hyperbole, it may be the Holy Grail and Philosopher's Stone all in one. The internal horizon itself expands. The lens through which we see the whole world and ourselves in it expands somehow: sharpened, blurred, muddled, widened, whatever the case may be. The point is the possibilities are infinite and thus we are made infinite.

We have within our consciousness the makings of a TARDIS. We're bigger on the inside. Much bigger. If there is no limit to the imagination of our species, we in turn have no limit. Accomplishment is keener to an accident or coincidence than it is essential. Our true prowess lies in the impossible. What is? A vastly more interesting question when we realize we've only squatted on the ice berg. A question religion often brands as heresy. Our certainty of what is, is but the slowing of an immortal quest. The quest of the stars when they first sprung into being because their complexity demanded it.

It is the quest of the fathers of Alchemy: What is physical and elemental? It is the quest of antiquity in its priestly and prophetic querie: What is beyond the physical? We have posited ever complicating questions of what is. Am I? asked Rene DesCartes. When you find yourself meditating on death, you begin to hear old questions asked by man ever since we learned to walk upright. As my husband has said: It is for us to hear the questions, ask them of our own lives and our own world in our own language in our own time and at various seasons of our time to see if we may add either to the question or perhaps proffer an answer. If we are lucky, we live long enough to ask a new question. If we are luckier still others of our citizenry take up the question with us. 

In any case, complexity happens. And complexity, the universe has taught us, is the source of us all, and we can only hope, the future of us all. Mom's outlook on life diversified that night. Her words were never quite the same. Her outlook shifted as I would come to learn over the following weeks. The last 10 weeks of her life. And the next day, we developed a plan to keep this from happening ever again, so that we could go on fighting. We would do it through nutrition. The OTC meds, even the mild ones, swung her digestive tract too drastically in either direction. No more meds we said. The whole reason she went through this chaotic evening was due to our attempt to fight off the constipation that inevitably comes with the first few days of chemo. 

So, I suggested, let's feed you an anti-constipation diet two days before chemo (high fiber, high fruit, skin on potatoes, wheat) and then on the 2nd day of the 48 hour chemo bag, we'll switch to an anti-diarrhea diet (a mildly complex B.R.A.T diet). Then we'll do that for a week, till we're sure we're in the clear, then back to the anti-constipation and so on. I worked back and forth with the nutritionist. 

By the way. If you're fighting cancer, any kind of cancer, but especially GI cancers, and are not working with a Nutritionist, you're kidding yourself. Everything we eat matters. What we don't eat really matters. The cancer "treatment" we're administering to patients is an attempt to make the body so incapable of cell growth that the immune system is brought within an inch of total paralysis. I was pumping mom full of white blood cell saviors in the form of a Neupogen shot in the stomach once a week just to keep them from bottoming out. So if you feed a cancer patient anti-oxidants, typically essential for our health (blueberries, green tea, vitamins), you're actually fighting the chemo's ability to fight the cancer cells. You have to get a cancer patient sicker than the cancer and hope that if you do get lucky enough to beat it, you haven't ruined the other major functions of the body.

I have to think one day we'll look back on this era of cancer treatment and remember it the way we remember the theory of bleeding patients to stimulate the body's blood renewal, thus purging the bad blood: leeches, razors, hot glass bulbs, cuts up and down the back, on the wrists. A treatment so utterly counter-intuitive to what the body needs. I know chemotherapy has helped millions of people. I have the utmost respect for the many men and women who know a hell of a lot more than I do about the fight for the cure. It just seems to me that it may be time to shift our gaze elsewhere. Let's hope.

So, we put our plan into action. I created 3 spreadsheets for the 3 stages of our 2 week cycle. It had food choices, amounts, times of day, etc. I based it on the calorie count recommended by the nutritionist. We approached the charts as a goal. If she couldn't eat exactly that much, that's okay. It's more important that she doesn't have to think about what she needs to eat. It takes so much effort just to put food to mouth, but having to think every time of what she can and cannot eat, whether she is or isn't hungry - too much. 

God bless Ensure. Fighting for calories? Go to Costco. Buy it in bulk. Get creative with your Ensure, not just the flavors, but the temperature. Room temp is great when the stomach is sensitive. Chilled is nice for a hot afternoon day met with hot flashes. And, because her Neuropathy  sometimes even room temperatures were too cold for her, so I would put it in the microwave for 20 seconds, stirring it halfway through to let it heat evenly. Some times we mixed it up with a little Strawberry milk powder. Each day, mom was drinking 2-3 Ensures along with whatever else she could get down. Luckily, vomiting hadn't been an issue, so we knew the more food she could eat the better .

It worked. I mean, it really worked. Round 4 - no constipation, no diarrhea, no drop in appetite, no weight loss, no food stress. So, as mom headed into her check up to see how the first four rounds had gone, we were confident and determined to keep going. We met with Dr. Pan to discuss the results from her latest scans. Mom, John and I were all in good spirits. We joked with the staff, chatted together while we waited, gossiped about this one or that. 

Here's what I remember. Dr. Pan put her scans on the board and said: It's not good like we wanted. The tumor on the pancreas has shrunk to about a third the size. We gleamed. But, there are more lesions and they have spread. Mixed news. The hardest part is trying to think of what to ask. What comes first are the practical questions. Can we still continue the chemo? How do you feel? I feel great: chin up, shoulders back. You look really good. Yes, if you want you can continue. You seem very healthy otherwise. 

I read about this. Sometimes you get bad news at first and not the kind of dramatic results that you wanted. But, that can still come. The biggest questions is: Are you strong enough to continue? The answer. Yes. I don't remember if we asked where it had spread. I don't know if he told us. I don't remember asking what effects we could expect from the spread of the cancer. I just remember getting the green light to go on. So, we did.

How do you break an unbreakable spirit? When is the resignation of what must be conceded when it is the fight of your life? The information you let in is just as important as what you ignore. We've all been in a place and time when we don't want to know. At least until we get through A, B and C. I'm not even sure we made all of those choices with a full mind. The fight dictates much of it. 

In any case, we were fast approaching Round 5. A week before she was scheduled to get the new chemo bag, Mom lost her appetite. She tried to eat, but nothing tasted right. The pain in her stomach was getting worse. As was the bloating. Even our mindless munching bowl of salted pretzel sticks wasn't working. She was drinking the Ensure, but each day she ate less. At that time, my main concern was that she would not be going into this round of chemo with our foolproof nutrition plan. But, then two days before her appointment, she couldn't put anything down. She was getting dehydrated. I called the hospital and Dr. Pan ordered a two hour session of re-hydration through IV before she began her chemo. 

She began to vomit. At first, it was neon orange. We got her into the car on the day of the chemo. She was so weak. She was so cold. We covered her in a blanket. While we were on the highway, half-way to the hospital, she threw up. Again and again. I went to pull over, but she firmly issued me on. What could I do anyway? 

I gripped the wheel and squeezed. I clenched back my desperate tears. I felt so young. Too young to drive. Just a child sitting next to her mother who was so sick and I couldn't do anything for her, but to obey. To continue to drive her to a place that was about to infuse more poison. I held white-knuckled to the steering wheel, willing myself not to accelerate into a ditch, a tree, a rail, a turn in the highway and maybe I just wouldn't turn. Maybe I would end this here and now for both of us. Isn't it the most humane thing to do? At least I could do that. At least I could exert some kind of control over the situation. At least we would be together. Then she wouldn't be sick anymore. I wouldn't be helpless anymore.

This isn't us. This can't be our story. I was on autopilot. I pulled into the garage and helped her take off her zip-up hoodie. Threw the soiled blanket in the back. Found a clean napkin and a water bottle to wipe her face, neck and hands. Her shirt was clean, but she didn't have a bra on. There is no way my mother was going to be carted into a hospital that way no matter how sick she is. I think my jacket will work, Mom. She pulled the mirror down to take a look. I can't imagine what she saw looking back at her that day. She wiped the tears from her eyes, wiped her hands over her bald skull, and took a deep breath. I drove up to the front entrance and we waited for her escort. When he arrived with the wheelchair, I hopped around to open the door and help her into the chair.  

We looked at one another, gripping each other's hands and sighed in unison. Here we are, we pondered together. It pained me just to leave her long enough to repark the car. I remember racing back up to the infusion center. She had several nurses buzzing around her. This was the first time we came to the center visibly weakened, both of us. And they responded in kind. They started mom on her hydration and it soothed both of us that she was getting restful nourishment right off. She slept. 

But, then they started the chemo. It was worse than ever. But, the alternative was to admit defeat. As I look back on the decision to continue, I feel regret. I'm not sure any of us where capable of making another decision, but I wish we had found a way to talk about it more. Consider what we were facing more. Maybe she would have had a few more days of calm. 

Instead, two days later Mom was admitted to the hospital. She hadn't eaten. Couldn't eat. Her vomit became more regular and turned green. I knew that color. I remember Uncle Ian's last months. When his liver finally shut down and his Ascites swelled his stomach to a hard barrel of fluid, he began to vomit green bile. It is the digestive tracts utter inability to pass anything through. This was a bad sign.

I was furious. We could have done it. If the chemo had managed to slow the spread of her cancer more successfully and done its job, we could have kept up this pace for months longer at least. We were so close. We did what we promised. But, the treatment hadn't done what it promised. It's promise was tentative at best. It's just that we were supposed to be the exception. 

Day 189

These days, remembering quickly turns into sanguine reverie. I feel like rushing through the details, but that would defeat the purpose of this story. There is no rushing through grief. It sets the pace unconcerned with the passage of time - if that capricious force even exists. Counting minutes does not provide substantial evidence in my purview.

My heart keeps returning to one of many times time stood still. We managed to get mom an appointment at the renowned Seattle Cancer Care Alliance. It was just for a consultation, a second opinion, a second option. At the Redwood City Kaiser, Mom was only given one option: Gemcitabine. When Mom and John went to meet with the Head of Oncology to discuss her biopsy results, this is what she was handed:

You have a malignant tumor on your pancreas, which has metastasized in numerous lesions to your liver. With Gemcitabine Chemotherapy you will have 4-6 months to live, without it, 2-3. You will need a port installed surgically to administer the chemo. Radiation is not an option. Surgery is not an option.

When asked if there was anything else they could do, she said simply: No.

As the news began to take hold, and Mom and John clasped onto one another, the doctor left the room leaving her nurse to handle the scheduling details. That was it. That was all.

I waited as close to the gate as I was allowed at SEA-TAC Airport, flowers in hand. She walked toward me, visibly weaker, but still with her shoulders back. We sat for a while at the tables as mom drank some water, ate a banana and caught her breath. That was the moment I felt our roles shift. It was like a clank, a thud, a gear dropping into place. It was time for me to care for her.

We had already agreed that Ben and I would be moving down later that month. I would come down right after Valentine's Day, so that I could be finish up at the flower shop and still be there for her first chemo.  Ben would follow about a month later. We got to my house on Greenlake and rested for a time. Typically this is when I would pour each of us a glass of chardonnay, but mom had given up alcohol some time before. The thought of drinking it became physically repulsive to her, so quitting was quite easy.

Instead I mixed up some virgin-sangria and sat her in Matt's (our housemate) white lounge chair, got her feet up and a blanket about her. I remember the sun being out that day, which is rare for late January in Seattle. Well, rare for Seattle in general. I knew she had brought it with her. Such a strange saying: You must have brought the sun with you. And yet, it is a common traveler exchange. Perhaps it is a remnant of a time when we had faith in such things. We grasped the enormity of the interplay between mankind and the world that surrounds us; the belief that the power of one individual can summon the sun, shoo the clouds and raise up the temperature of the earth. If that can be believed of anyone, Denise is certainly the one.

It was with that same confidence that we walked jubilantly into the Seattle Cancer Care Alliance. It jolts me to recall our optimism. It was absolute. There is something utterly tangible about walking into a healing center dedicated to cancer. You know that absolutely ever person you see either has cancer, loves some who has cancer, or is treating someone who has cancer. People walk in a daze about the halls. Toddlers barely able to walk tumble out of elevators with bald heads and tubes jutting out from their face. But, they smile just like toddlers. Their parents cling to one another with brave faces. The attendees are gentle, not mushy gentle, tough, solid gentle. They don't coddle - coddling is bad. They listen and assure. Being careful not too promise to much whilst believing in miracles with you. They let you set the tone and guide accordingly.

We charmed our way through the waiting area. I can see now the light we were emanating.  We must have looked like newbies. You can always spot the cancer amateurs. They have trusting smiles on their faces, hair on their heads and a gleam in their eye that still believes someone or something will rescue them from this misery. Surely, all these people with all this research can fix us. They will see how much fight is in us. They will feel the support from countless loved ones buoying us up. They will know instantly that we mean business. We will give our all and expect nothing less.

Sitting in the waiting room, knowing that these experts had mulled over all of the notes and labs we sent earlier, we were eager to hear some options. The oncologist was extraordinary. Her demeanor won us over right away - not an easy feat with the two of us. I remember the feel of Mom's hand clutching mine. I remember the soothing taupe and teal of the room. I remember the doctor taking out her pen and paper to draw out basic anatomy, explain where the tumor was, what the lesions were doing and finally, what our options, plural, were.

First, Gemcitabine was a necessary component to any chemo cocktail she was recommending. It is the only substance proven to have any effect on Pancreatic Cancer. But, it is a starting point. She detailed the other two options Folfirinox (Full-Fuck-A-Lot as Mom took to calling it), and a clinical trial only available at the S.C.C.A. As Mom was hoping to stay home for her treatment, this one was not an option. But, Folfirinox is offered many please, she explained. It is very aggressive and as she could clearly see we were up for it.

Not only were we given options here, we were given a human being. Someone who took all of our questions and even suggested some. It breaks my heart that Mom first heard about her diagnosis from an icy bitch. She deserved better than that. My heart still breaks for all the other patients who have no choice, no second opinion. Hope is essential. I know everyone says that, but early on this is what I discovered about fighting cancer:

If you despair, there's only despair. If you hope, anything is possible.

Of course, hope isn't something that you can choose once and ride all the way through. It's like marriage: it's a choice you have to keep choosing. Otherwise you'll find that you end up so far away from the hope you started with that you forget why you ever believed and giving up feels like the only way to peace. We left that place so hopeful.

We had a great visit. Mom cleaned my house while I was at work, por su puesto. A lot of my friends got to hug Mama D and feast with us. It was the last time many of them saw her. Her hair was long and blonde and lovely. I always loved it when she grew it out. John and I were always trying to convince her to let it grow. She had epic hair. That weekend was the first time it occurred to me that I would never again see my mother like this. She was opting to cut her hair uber short in preparation for the chemo. I realized that weekend: when she died, she wouldn't look like herself. That broke my heart.

We got her safely home, texting John and the aunts along the way. The eagle has landed, Aunt Terri confirmed. She came home with renewed vigor and it spread to all of us. She had one more meeting at UCSF and was eager to hear even more options. The oncologist there concurred with the assessment of the Seattle doctor as well as with our disgust that these options weren't even discussed by the Kaiser doctor.  In fact, the USCF guy knew a guy in Kaiser in Santa Clara who frequently utilized Folfirinox, which meant we wouldn't have to pay for her treatment. That's how we met Dr. Pan.

Mom got her port put in at Redwood City Kaiser. I guess we can trust them with a simple procedure like that, I asserted. The port is a permanent IV placed just under her left collar bone, which heals under the skin.   This way, her veins are spared from the poisonous treatment. It can also be used for blood draws, hydration, any and all IV needs. And, when you beat it, the port can be removed. I know it sounds off-putting to opt for a permanent bobbly thingy put under your skin, but if you or your loved ones are looking at a long haul of chemo treatments... GET THE PORT!

The clock has been ticking and each minute mom wasn't getting chemo was a minute wasted. So, when I phoned Dr. Pan to get an appointment and was told she couldn't be seen until April for her consultation to discuss chemo, I was clear that this was not an option.

Okay, I explained in my best calm yet dominant voice: Here's what I need you to do. Please write a note to Dr. Pan with my mother's name, her Kaiser number, her diagnosis and her referral from the UCSF doctor, his colleague, and place it on his desk. Can you do that for me please? Yes, she said tentatively and then started to: But, you need to know that Dr. Pan isn't available--Yeah, yeah. I understand, I interrupted. Just put the note on his desk. For me.

Half an hour later, mom got a phone call from Dr. Pan's office: Are you available at 5:30pm tonight? As soon as Mom told me about the appointment, I found a florist in his area and had a dozen long-stemmed white tulips delivered to his office. When Mom arrived at Kaiser Santa Clara, just 20 or so miles south of their house and a much nicer facility than Redwood City, Dr. Pan walked in the room and said: Your daughter sent me flowers. What? queried Mom. No, I don't think so (I hadn't told her). Yes, he insisted, you're Denise, she's Jessica. She sent me flowers.

I wanted to send a message: You make an opening in your schedule after hours on the day we call because that's what it's going to take to give the most precious woman in the world to me a chance at life, and I will be your greatest champion. Losing is not an option for us. We don't wait in line. We don't wait for test results. We don't wait to be told what to do next. Mom taught me young not to wait by the phone. When you want something, you go get it. We wanted treatment. We wanted it now. And, that's precisely what we got.

Mom started Folfirinox the following week. Don't be afraid to advocate for yourself. Certainly, you have to work with the system, but that doesn't mean you can't push the boundaries every chance you get. Make sure all involved with your care know the name to your medical number and the face to your name. Make sure they know that you know that if you don't get the kind of treatment you need, you will fight until you do. The plague of cancer in our midst has created  not just heartache and devastation, it has also bred a generation of warriors fighting for their lives while their whole body is brought low. They march, they walk, they run, they share, they live the fight of their life in front of us all.

They infused the word Survivor into a disease that has no cure. They're bad ass. You have to be. You can be. You are.

Day 152-166

Day 2


I phoned Jamie. My cousin and I hadn't spoken in some time, and then only rarely. Each conversation, however, felt deeply familiar and easy. We were raised like siblings as our mother's are very close. We're all close. We didn't know we had a choice in the matter. Family is family.

He is the bullying older brother of my girlhood who made me choose between getting whacked with his right hand as it dangled over my head, or his left which shook expectantly at his hip. Who pushed me down stairs in a laundry basket when I was refusing to go and thus holding up the line-enter trauma leading to random stair phobia. Who made mashed potatoes fly out of my  nose with a joke like a bullet ready to strike just dangling on the edge of his lips daring me to take another bite (a tradition, I'll add, which he recently bequeathed to his sons: This is Jessica. The Mark).

These are the stories that get told and retold in my family. And so, it becomes the story of you. We all, and by all I mean all, have stories that follow us around within the family.  Just in case you have ideas of outgrowing your britches, these stories remind you that you were once just a little girl who put raisins on her shoes. For more on that story, see my Aunt Gaile.

My mother is the middle child in a family of 7: Nana (D) and Grandpa (D)--aka. Barbara and Jim Seufert had Roxanne, Gaile, Mom, and the twins, Terri and Mark. Various aunts and uncles have come and gone. Some have gone and come back. I am somewhere in the middle of 13 cousins.

Joshua and I were raised with Gaile's kids. We played soccer together - well, they played, I picked flowers in the field. We went to the Redwood City Fourth of July parade together. Went on road trips together. Saw each other for most birthdays and holidays, trips to Sea World and Great America. We're family. So, even though Jamie (Gaile's eldest) and I hadn't spoken in a while, when mom told me she sent her tests down to Jamie in order to get his honest opinion before she had to face the rest of the family, it made perfect sense to me. He's got that fancy Head Researcher job in Southern Cal doing something to cow brains for the good of genetic research, and he'll give mom a straight answer in that tender, sensitive way he has. 

Before I phoned him, I wanted to be up on the terminology related to Pancreatic Cancer. I phoned the Pancreatic Cancer Society to get information on the best treatments available, the clinical trials, causes, stories, basic anatomy, everything I could stuff into my brain. I don't remember everything that was said. I do remember that in my research I had already read the life expectancy statistics before he said them out loud: 2-3 months without chemo and 4-6 with. I remember that he said again and again: If you ever need to talk, have questions or just need to scream, I'm here.

Mom confessed that Jamie was the one that told her with conviction: You have to tell the family. Not that there was any question of not telling them, it's just that she wasn't rushing to make the announcement. For the first time ever, I saw my mom turn so deeply inward that she wasn't rushing to take care of everyone through this. She answered her needs with quick provision and without constantly weighing the needs of everyone else. This, from the woman who made the best pesto I've ever had despite the fact that she hates pesto. She only realized a year or so ago that she often made food for others that she didn't particularly care for. My mother, as it turns out, was a very picky eater, she just never burdened anyone with it.

As she told me so often before in a kind of mantra of the self-actualized woman: It's okay to be high maintenance, as long as you can take care of yourself. Her rigidity to this anthem would soon be tested and I think the prospect of that vulnerability and dependency sparked her need to dive into the reaches of her person for the fortitude and courage this next season would require of her. As for me, I think I tried to dive in with her. Perhaps I'm still trying to crawl back out.

Day 149

We neared the Christmas season and Mom couldn't seem to get an appointment with her doctor at Kaiser. She had planned to come up to Seattle, since we had missed each other for Thanksgiving. But, her discomfort was rapidly worsening. She found herself not wanting to cook. Not wanting to see anyone or go anywhere. It didn't sound like her. Work became harder and harder.

Finally, in early January, she met with her doctor.  Then came the waiting. The tests and the waiting.  They're going to run some more tests, she said. MRI led to CAT Scans and blood work. More waiting. 


It's the pancreas. They want a biopsy. I need you to listen now. You understand what this means, baby girl, right? She's crying, but firm. 

Time thudded to a halt along with my heart. I entered a new kind of time. A time that truly had mastery over me. A feeling, I imagine, like being held hostage. The moment some poor soul captured by another accepts that control of their fate is not solely their own to toy with. It is seeing without delusion. But, that does not mean we are powerless. For power and control are not the same. The former is a true and vital part of being human. The latter, a mere mirage.

A biopsy. They want to do a biopsy, I told my husband. He had barely come through the door from one of his jobs, harried and exhausted. A biopsy, he confirmed disbelieving as he dropped his heavy bag on the living room carpet, still wet from cycling through Seattle rain. I was huddled into the couch under a blanket, a common scene these days. My face, red with the day's revelations. He dispelled the cloud of fear that hung about me with a few simple words: Well, I guess we're moving to California.

Mom and I have always been close. By close, I mean kindred.  Connected by some deeper force than even we understood. I told her a long time ago, back when I thought I could change the world through some summer mission trip to Turkey, that I would come back from whatever far off place I had landed, and take care of her at the end of her life. Of course, I never imagined that it would happen so soon. Ben knew that I would be utterly miserable, the longer I had to stay away. He too wanted to be with her. She always got him.

So, again, we waited. Joshua came out to Woodside from his new condo in Vegas  to be with mom after her biopsy.  It meant so much to her to have him close. She kept telling me that she wouldn't have known how tell him otherwise. They've always been so similar, those two. They've had such a unique relationship.

I always say, I've always been more like dad trying to be more like mom and Joshua Paul was always so like her trying to be like dad. They have the same heart: tender, lion-strong and enormous to boot. The funniest similarity is that they both think we all can't see how gooey they are inside.

Day 1

On January 26th, 2012 mom had an appointment with an oncologist at Kaiser in Redwood City.  That night, mom wanted to video chat with us to discuss the results of her biopsy.  She wanted to tell us face to face. She wanted us to see how strong she is so we wouldn't have to be so afraid. Then, time went ahead and stood still. Through the blur of a trembling planet held in stasis, came these words like a slow-motion fall into a sea of stinging nettles:

I have cancer. There's a tumor on my pancreas and it spread to my liver. We're going to start chemo right away. We're going to fight it.

We stared at each other with our brave faces on. Ben held me close. I squeezed all my childhood fears into his hands till my knuckles burned. We all agreed to be strong, to fight and believe.  I think that was the first time I ever really needed hope. I couldn't find it. Did I even know what it was?

I'm afraid, like Nietzsche, I believed: Hope in reality is the worst of all evils because it prolongs the torment of man. Hope fell synonymous with naive, altruistic, denial, heartache. Perhaps those words are akin to hope. But if anything is possible like our darling Sagan says it is, then I suppose in some universe hope also might play a role. At the very least,  I determined to think on it. To listen to hope as it came. To strive for a perspective on hope more like the Dalai Lama:

I find hope in the darkest of days, and focus in the brightest.  I do not judge the universe.

Day 144

Intro Cont...

I was just remembering the conversation mom and had one day after work in early December. I sat in the church parking lot behind our little house in Greenlake just north of Seattle and we talked. I told her that everything I know about the mother I want to be is in my memory of her. That means giving unconditional love selflessly, passionately and often to my children.  It means giving them a home to be proud of, filled with laughter and an inexplicable warmth.

The kind of place that feels instantly like home, smells like home. Before you know it, your feet are up a drink is in your hand and your laughing louder than you have all day. It's a place where time stops, well, as long as we can manage it. In my mothers house, people catch themselves sighing. Breathing deeply. Wanting more. Wanting to stay and stay. People forget whatever else they had planned and simply linger. They forget what always seems to plague them. The remember who they are though. That's what light does. She is light.

You were a lioness, I exclaimed. Am I not that as well? You guarded us. You huddled us into your bosom and reared us alone for many years. How will I know how to share the task of parenting? What will keep me from guarding my children as you did?

I didn't want to be a lioness, she said. I had to be. You work in a flower shop. I could hear her smile: You have a beautiful husband who will be a wonderful father. You have a powerful community around you. You won't need to be the lion. And if you do, you'll know. Just trust yourself. You'll be magnificent. You'll be the flower child I didn't get to be.

It brought to mind this fable told to me by a dear friend, Katie who lost her mother from Pancreatic Cancer a couple of years ago. A fable she heard through a shaman in Seattle whom, I imagine, heard it from Nietzsche:

When we are born, we are camels. We drink and we drink. We drink in all that we can and store it. It is important that we drink in much, so that we may be large camels.

And, it is important to be a large camel, because when we reach the desert, as great a camel as we were, so we are great as a lion.

It is important to be a great lion,  because we must cross the desert. And, when we reach the edge of the desert we must slay our dragon. The dragon is: Thou Shalt.

Once we slay our dragon, we become a child.

I've thought long about this story. I love old stories. I think I was born a lion. A desert child. And the desert was my home. The only home I knew or wanted or knew to want. I didn't know to hope for more. I became   quizzically adept at guiding new born lions from one end of the desert to the next, offering pointers on how to locate, name and ultimately defeat their dragons whilst mine thrived from neglect. I remained paralyzed from a fear of my dragon. Little wisdom I have shared, have I consumed.

As I sat again on our porch, staring into the lake, I saw the evening light dance on the water. Street lights spraying pink, yellow and green lights in ticklish streaks down the black quivering surface. I followed the light, crisp and electric into the foggy blur of cloud cover reflecting hazy on the water. In that moment, the scene changed. The axis of the planet changed. The bright lines were not tracing the waters face, but pouring down an abysmal cliff face. The fog wasn't a gray mirror, but a billowing fog nestled in the basin of an interminable canyon. Perhaps it was the smoky breath of a dragon hidden beneath.

I felt dizzy. Turned my head. Restored my field of vision. But, then I couldn't help myself. I peered again into the pitfall and drenched in its possibility. A lair. Where my dragon hides. I want to see his face. I want to slay him. Let him surface, I called to the cavern. I summoned some haughty attempt at courage and waited for the challenge to be answered. Nothing. Like the Nothing of the Neverending Story. Just nothing.

Fear gripped me. Nothing is more frightful than the unknown. Better the devil you know, they say. But to walk up to, no, to jump into an unknowable trench to face an unknowable enemy with an unknowable outcome. Pass. It occurred to me far later, much longer than it probably took you to sort out, that it is the Unknown itself that I must slay. But, what kind of weaponry does one bring to a battle with the unknown. How, for instance, does one approach the question, will this pregnancy survive? Why do I get this sinking feeling when i think of my mother telling me she was not feeling well?

If I bring power, I end up yearning for control only to be dismayed. The earth need simply shudder beneath my feet to dismantle that illusion. If I bring cunning, it will take but a moment to find I'm outwitted and bitterly humbled. To prepare for the unknown is to howl at the moon. It occurs to me, I cannot fight this dragon. So, how do I accomplish its death? This meditation returned nightly and grows in meaning even today.

I gather hints here and there. This weekend, in fact, a wise young man simply said to me: Accept. I keep hearing words like that. Surrender. Release. Breathe. These words are my mantra now, though they sit heavy and dry on my tongue like a bad case of cottonmouth. I keep licking my lips and sloshing my tongue about to shake it off. But, perhaps this dragon will lie down to a my new song of concession. Then, if I'm lucky, I'll arise a child again.

I want to be a child when I have a child, I told Mom.  Maybe then I won't have to worry about relying so heavily on the lioness at the expense of those closest to me. She always understand my crazy way of saying things. You will be, she told me.

Then she asked me what I was making for dinner. I can't remember now. She always asked that though. I almost don't know how to make dinner anymore, without her asking. What should I serve with the pork loin, I'd ask. Ooh, I just got this great recipe for a Warm Apricot Spinach Salad with Prosciutto and Goat Cheese, she'd say.

Rest and Reflection

So many of you have shared your experience of this blog with me and what it meant to you. Please know, that it meant a great deal to hear that we were somehow able to connect through it. In fact, there has been so much encouragement, that I've decided to expand this blog and our story into a book.

 I'll be posting the new installments on the blog. I look forward to your comments and emails as well. If you have something to add to a particular time frame I'm writing about, or just want to share a story that was meaningful to you in this process, please do share it! I'd like to get as full a picture as I can.

 Mom was very clear about her intention to share this process with the world: We know things other people don't know yet, she said to me. If they can learn something from us, we need to tell them how. You need to write about this for their sake. I must confess to you early on that sharing has never been my strong suit.

 Deep breaths. I told my husband the other day: I think I'll look back on this time of my life as a haze of sighs. Breathing is important. And, deep breaths give wind to a full voice... or so I'm told. We'll see.

 So, here is the first of what I hope will be many stories about my mother, my family, our friends, hope, courage, death, time and as much of myself as I can muster.

___________
 Some beautiful autumn morning in November 2011 I was turning down Holman Rd. headed west. I had a couple of deliveries that morning in the charming, little red pick-up owned by my employer, Melissa Feveyear of Terra Bella Flowers in Seattle. Nana and I were talking again. My mind wandered to her often at that time. Enough so, that it had become curious to me.

 But not now. Now, I was laughing at something she said, or had said long ago. Something crude probably. As I pulled to a stop at the light in front of the QFC, and slid the stick back to neutral, my head instinctively turned to the passenger seat where I expected to see her with her head thrown back in laughter and her heels lifting off the floorboard.

 And, I did see her. Only her face wasn't gleeful, it was sobering. It almost felt as though she were clutching my elbow to further gather my attention, as she had done so often before: You have to be brave now, baby girl.

The light turned green as my whole being erupted with tears. I cried so hard, so deeply and so instantly that I had to pull over. I gave in to whatever need to come out. I'm not sure for how long. There is a secret power to crying that too often is allotted only to women. Crying is healing, refreshing and deeply soothing to the soul. The tremendous fear I felt in that moment had washed away.

Soon, I felt better. I pulled out of the parking lot and continued on my route. My mind flickered back to that odd encounter and I made a mental note to give it more of my curiosity. But for now, I took this bit of wisdom from my grandmother, as I had so many other pithy truths before: be confident, be generous, be a good dancer, be sexy, be adventurous, and so on. Be brave. Ok, I thought. And for a couple of days after that, I didn't give it another thought.

I was out on another flower delivery when mom called. I hadn't heard from her since they got back from their Thanksgiving on the beach. We weren't with them, even though it was supposed to be our Thanksgiving with them that year. Early on in our marriage, Ben and I decided to solve the family holiday crisis by switching Thanksgiving and Christmas with our families each year. And, last year, Thanksgiving was meant to be with mom and John and the rest of the expanded Seufert clan eating deep-fried turkey by the shore, but alas I couldn't travel down. I was early on in a high-risk pregnancy and couldn't risk any extra strain on my body. So, of course, mom called to tell me all about it.

Actually, she started saying. I haven't been feeling well. I have this weird pain in my stomach. Jessie made these delicious beans... I laughed and interrupted her. You mean Aunt Terri, I asked playfully. Mom always got us confused. She said we were kindred somehow and so she would get us mixed up her in head. She laughed. Yeah, anyway T made these beans and I ate so many of them, I think my stomach was just crampy. Anyway, she continued, I'm going in to see the doctor this week.

Good, I said trying to give encouragement to the idea. Mom was never a fan of doctors and therefore didn't go very often. I don't get sick, she used to say smiling sweetly. It just feels like heartburn, she said. I'm sure it's nothing. I agreed, told her to keep me posted on her appointment. When's your next appointment? 'Cause you're prednant, duss in case you forgah, she squealed in her baby-talk voice. I din'net forgeh. I'na hav'a baby, yay! Yay, she cheered. A puppy yelps in the background. It can only be Guinness. Guinness is mom's Tea Cup Chihuahua. He's black with white paws, so when you tip him over he looks like a Guinness. When they got him as a puppy almost 9 years ago from a work friend, mom wanted to name him Domino. But, Josh and I balked. He has to be named after an alcohol, we insisted. It was sort of a family tradition. It started with our 155lb German Rottweiler, a.k.a. Jager Meister. So, Guinness it is. And, Guinness the "Circus Dog" was howling into the phone from my mother's lap with her encouragement. Dins, it's Jessica. It's Jessica, Dins. Say, I love you. Arrroooo. Arrooo. Dass a good puppy, she said. He said it. Did you hear him, Jess? Yes, I laughed. If you don't agree that you heard him say it, this can go on and on.

We exchanged words of love. They came freely and with great familiarity. I'll call you later, mom. I checked the card in the arrangement next to me and headed back on my route. A subtle wave of sadness fell over me and for the first time since it happened, I remembered my encounter with Nana. Is it my pregnancy? Should I be concerned? This was our second try, but the doctor said the baby looked great. We heard the heartbeat. We even got pictures this time. I heard mom's confident words of reassurance when I first told her about the great results of the sonogram. If it's not that, I thought, is it mom?

 But no, I couldn't go there. Throughout my life, even as a young girl, I've had these chilling, foreboding thoughts of losing my mother. I always soothed myself with the thought that anyone who had someone in their life like Denise would experience a fear of losing her. How could I possibly live without her. I never lingered long over these thoughts, but I confess feeling worried about the way she sounded. She never gets sick. She never goes to the doctor. But, more troubling than that, she never sounded so concerned, almost scared. Mom was quite fearless (except perhaps on the highway).

I shook these concerns off, took a deep breath and pressed on. This is a coping mechanism that is often too effective and quite costly in the long run. It is, I imagine, a soldier's game. A true survivor, when faced with impending dangers will shake off the fear of the vast threat and focus solely on the fight at hand. So, with a deep breath, he picks up his weapon, pushes off from the ground and somehow manages to put one foot in front of the other. This method, however, is only effective if at some point the season turns from war to peace and the soldier is able to rest and reflect over his battles.

It is the secret to my strength and thus, my greatest weakness. My body cannot bear the burden of my postponement of these wind-spun illuminations into what may be. I am a Odysseus bound to the mast with leather and chain tearing straining my joints and burning my skin as I kick and flail against them. All to harken to some siren song that will form a mirror before me that I might see my reflection fully and without filter. I dare not share the song, but stuff the ears of my men with wax for their own sake.

 A reflection is a dangerous thing. Ask Perseus who slew Medusa or Atreyu who faced the most fearsome oracle of all, the one that shows you who you really are. But, now I am resting. I am reflecting on these things and they grow with meaning even in the remembering. We seek what we find and without fail. If you spend a day thinking about butterflies, you'll find that after days of not seeing them, you see several flitting about. Too often though, we do not truly know what it is we seek, though we find it nonetheless. I am looking for meaning in the midst of meaningless loss. It is my desperate search for hope. A few days after Thanksgiving, I miscarried our second child. Mom called and told me that the doctor thought she had an ulcer, prescribed her medication and told her that she wanted to do some follow up tests. An ultrasound.

I called Candace, mon coeur, and finally had courage to voice my concerns. Mom isn't feeling well, I confessed to her. She heard it with the weight of all my meaning. Even and perhaps quite likely, more meaning than even I had uncovered. She will not shrink from my heaviness. She never has. I'm sure we scheduled a time to meet for happy hour pizza and wine at the Fremont Via Tribunali. It's dark, oaken booths and dimly lit wrought iron decor satisfy some of the all-too-important aesthetic of our times together. The food and the booze being equal in that hierarchy. From the first word, we are connected and speaking from the heart. Sure, there is humor and the occasional jape at someone's expense (usually the tastelessly dressed twenty something with her ass in the air). But mostly we plunge headfirst into the depth of being. We rattle quickly like two natives finally speaking without a translator. We rarely finish sentences and come armed with a full assault of detailed chronicles of the past 15 years with intimate insights to boot. It is a rare thing to find a friend that understands you fully and always seems to add to that understanding with constancy. I told Candace I would keep her posted on mom's tests.

I would have to wait till Ben got home later that night to tell him. I was very concerned. I returned to our little house across from Greenlake, just north of Seattle, that sat on a very busy thruway, Aurora. I sat on the porch facing the lake and let the sound of the traffic wash over me until it was nothing more than the sound of the ocean. It's a little trick you learn to play when you hear constant traffic.

I lit a smoke, grabbed one of the cold beers that had been left on the porch, and sat in one of the plastic brown chairs mom had bought for us at Lowe's when she came up to help us unpack. She set up our entire kitchen before she left. I looked out over the lake, watched a few runners go by with a slight sting of judgement and jealousy and let the day wash over me. The year. There is something terribly lonely about losing a pregnancy. It has to do, I think, with how not alone you feel when you're pregnant. At some point, it actually occurs to you that you are not alone, even in your own body. A whole person is growing beneath your skin in the dark complexity of your mysterious innards. And then, you are alone again.

Without the support of my mother, who endured two miscarriages herself before I was born, I don't think I could have come through those losses. She was so certain that I would be a mother. And what is even more encouraging, the thought I could be a mother. A good mother. The opinion of my mother on motherhood is without exaggeration (never believe a Jew when she says that) like Gandhi on meditation, like Mario Batali on Italian cuisine, like Anna Wintour on hem length. Her words comfort me still today and if I have the courage to keep listening, I'm sure they will always do so.

Day 116

Denise Merle Green (Seufert) April 28, 1950 - May 20, 2012

Day 113

I wish I could truly explain what a beautiful thing it is to witness the dying of a star. A woman going supernova before your eyes. Mingled with your interminable grief, amid the quarry of lonely, foggy abyss, you see light. Light in neons of pink and green, yellow and orange bursts that climb the cliff face you once gazed at from above. Rays of passion and hope stream all around you. Soaring into the heavens.

When my mother still had her words, when she still experienced lucidity from time to time, she giggled curiously and said to me: I keep wanting to ask you what your mother was like. Once again, she steals my breath away. I gasped and then smiled: Any time you want to know about mother, just ask. I would love to tell you about her. If you don't know who my mother is, you should ask. I mean who she really is.

She is courageous. She is confident, but kind. She is impatient with incompetence, yet unconditionally accepting when you're ready to learn. She can make herself heard any time she chooses. She insists upon her dignity, her composure and she will never concede a fight. And that was just this morning.

If you're the poor fool who mistakes her beauty (though Aphrodite incarnate she may be) for her greatest strength, you will learn the hard way that when you enter a staring contest with this woman, you have one of two fates: you will either run in fear with the knowledge that she can see right through you or you will fall in love with her for that very reason. She shines her light in the darkness and the dark things scatter or become light. She is sexy and knows what to do with it. She is witty, strategic, discerning and diligent. It's hard not to smile when you think of her. It's impossible not to want more of her the more you get.

All my life, people have told me how much I look like my mother. And all my life, I've felt so honored by the compliment. I endeavor to this day to deserve such a comparison. She had a few days a few days ago that were wrought with distress, anger and criticism--mostly directed toward me. As her voice echoes in my being at the slightest whisper, her words struck deep and sharp. And in that crushing moment, I felt a keen rejoicing at the sheer veracity of this woman. She fights even now. And even now, I would stand in the fire again in an instant, just to hear her voice.

There are so few moments in our lives when the Fates call us to attention. Life screams at you to stretch and adapt. To be humbled and to have hope. To gaze upon the light and reflect once more into our very being. Though the image of oneself can be daunting, fearful even, the message is not one of obligation, expectation or even transcendence. It is healing. A dying star brings healing.

Day 107

Mom has always wanted us to share her journey with as many as would listen that they could see the light that has touched each one of us.  I wasn't sure at first, about counting days. There was something about it that seemed too dark and finite a heading. And yet, January 26th, zero hour, the day of mom's diagnosis, the day the earth shook like my heart and time became something new.

Time seems even stranger now than when I first started counting days. El tiempo. Mi maestra. How can a force so constant seem so changeable? The answer is simple, I suppose. The change occurs within me.

If there is something I would share about this journey today, it is that today is the new day. Today is a day within each of us that can begin at any moment. Each day my mother remains with us is a new day. Hope is the light that breaks through the pressing reality of an uncertain tomorrow. Uncertain for us all. It seems that the light shines brightest as you near the darkest realities of time. 

I think I spend much of my time distracting myself from its passing whilst bemoaning my ability to keep it from ticking on. But, time is not an unconquerable foe. It is our anxiety of tomorrow that defeats us, not tomorrow itself. It is our regret about yesterday that keeps us from stepping forward into today. 

Please believe, I declare these things more to myself than to anyone. It is a lesson I am still learning from my mother. She understands the light of the moment with such a keen and sexy whimsy that she makes even the most demanding moment seem no greater than any other. While she can turn even the mundane into an unforgettable joy. 

Accidentally fabulous, I call it. But, of course, it's not accidental at all. If you have entered her home, you'll know what I mean. There is something so inviting and utterly delicious about walking into a space my mom makes. You can't quite explain, but you instantly feel a kind of warmth, then comfortable - like on your own couch in your cozy pj's on a Saturday afternoon comfortable, and then there is this ease in conversation wherein you find yourself being truly vulnerable and happy beside. 

That is her power over time. You feel safe and easy in the moment. Unconcerned with the future. Forgetful of the troubles that seemed to retreat at the door.

I'm not sure if I'll ever stop counting days. January 26th will always mark my time. But the most important thing about Day 107 is that it's today. 

Day 92

The Ordeal...

Here is a small narrative of the past 36 hours, which I will assure you from the beginning, has a happy ending.

Tuesday, 4/24

10:00am: I confirm after an hour of staring at mom's NG tube that it is not working. After close analysis of my constant companion, the GOMCO pumping machine, I discover that the problem lies not with the position of the tube from my mother's end (a solid relief since we've learned that means a trip to the ER),  but in fact from the manufacturing end of the machine. No suction.

10:01am: I call the hospice hotline to report the problem and I am assured by Martha, the lovely and apathetic Nurse Mgr., that a new machine will arrive via Apria Healthcare soon.

2:15pm: Apria Healthcare delivery arrives with a new box, which they switch out for the old one. Alas, it is still not working. I am then told by the driver that it takes a while to get the thing working. We wait. It's still not working. He calls whomever with his walkie-talkie and he is advised that it will take an hour to get started. This is not so,  I tell him. I am quite familiar with this machine after 2 weeks of use, I explain, and it should be working. It takes an hour, he says. Please sign here. I sign, more to get rid of him than to appease him.

2:45pm: I call the hospice hotline again and speak with Martha, who is again understanding, and she tells me that a nurse will be out to help with the machine. She is also going to ask Apria to bring another machine out just in case.

5:00pm: I receive a call from a different Apria driver who tells me he is supposed to bring a new machine out though he confesses he's not familiar with the device and then begins to ask me inane questions about a machine he doesn't himself understand. I ask him not to call me, but rather to speak directly with hospice to arrange the delivery. What's hospice, he asks. I breathe in. I breathe out. You know, I think, I've been waiting for a reason to let off a little steam. Now's as good a time as any. After he fails to grasp my explanation of hospice, I hang up.

5:30pm: I call hopsice again and ask them to take over full control of the situation as I am losing patience. All this while my mother is not getting drained.

6:00pm: I get another call from Apria.  The same guy. He doesn't improve. We argue. I hang up again.

7:00pm: I get a call from hospice (it's Margaret now) explaining that they've spoken with so and so's supervisor and a new device will be delivered. I also hear that the hospice nurse has been delayed by an urgent patient and will arrive as soon as she is finished.

7:45pm: I get a call from Apria again. Different tone this time. He's very sorry. He's leaving San Jose and picking up the machine from Menlo Park.

7:55pm: I call hospice again. Again, Margaret is a joy to talk with. She asks how I'm doing through all this. I tell her the truth. She understands. She then offers the first practical solution to helping my mother in the moment that I've yet heard: if you feel up to it, she says, I can walk you through manually draining your mother's tube in an effort to relieve some pressure. Agreed. Success. Relief.

9:00pm: Apria calls from Menlo Park asking for my address and directions. Really?

9:15pm: Chris, the hospice nurse calls. She's in San Jose. She needs directions. This takes far too long. She's on her way.

9:30pm: Apria arrives with the machine. I leave the room. John stays and it's a good thing too, because after the Apria guy breaks the new filter for the new machine, John realizes that the old filter is the problem... not the machine. It's water logged. So, we've discovered the problem, but again are left with no solution. I'll put an order in tomorrow, the driver explains. It should get here Thursday. No, I say (I'm back). She needs it sooner it's urgent. He repeats himself. I sign his paper. He leaves.

10:00pm: Just as Apria is leaving, the nurse pulls in. I explain about the filter. I explain about the machine. She is thorough and agrees it is not working properly. She takes mom's vitals. Is content she's in no immediate danger.

10:45pm: Mom is finally able to sleep.

Wednesday, 4/25

9:20am: Martha from hospice calls. She has reviewed the notes from last night. She apologizes again. No, it's still not working, I tell her. A filter in the mail on Thursday, I tell her. No, it's not acceptable, I agree.

1:30pm: Apria arrives. New driver. He brings 2 filters. Could you set it up please? It takes an hour to get started, he says. That's incorrect, I repeat and repeat. He sets it up. Let's test it, I suggest. Marvelous! It works - and we didn't have to wait an hour!

2:00pm: I hook mom up to the machine. It's not working. I wait. I fuss. It's not working. John comes home. We wait. We fuss. It's not working. I breathe in. I breathe out. Leave it alone, mom says. I'm fine. It's still not working. A little morphine. A pull here. A tug there. A little suction. A little pleading from my soul.

3:00pm: A little of John's magic touch. It's working! We put mom to bed, where she rests now. In the comfort of a functioning NG tube. I told you... happy ending.

I'm only sharing now, because... well, because I needed the therapeutic exercise of getting this experience on the outside of my being. Also, although this was a rare complication, it is the stuff of our everyday. I'm not complaining, I'm communicating. So, please forgive us if we're not quick to respond. If we seem frazzled or over-exhausted.

I feel like a new parent. Clumsy, unsure, restless and bumbling. All of your encouraging words have meant the world to me. To us. Please know that even if I don't respond right away. I'm reading. I'm appreciative. And, most importantly, I couldn't do it without you.

Day 90

It's hard to believe that it's only been 3 months since the first day of Mom's diagnosis. Time, a powerful fourth dimension though it may be, does not command the growth of our lives. Some lessons may come gradually over years, even decades, and yet other life-altering awakenings occur spontaneously in a single moment.

Not only am I not the person I was 90 days ago, there have been countless iterations within that span. It's happened to of all of us in some way at some time, hasn't it? You go to bed not even knowing what your lacking and wake in its fullness. An epiphany. A humbling death met with a swift resuscitation where the air itself feels different, tastes different. Sure we can revert and go back to our old way of looking at life, but we're not really returning. We're bringing something entirely new with us, regret. Regret is a fertile creature too: Depression, Shame, Contempt, Self-Deprecation, Doubt, Cowardice. Though growing pains can be unbearably severe, the slow creep of death has a far greater sting.

We all change and in many ways. But, it seems the time-bending changes happen more often when change is thrust upon us by some unforeseen event. So, I am new today. Today I am not reading the story of my life, it is being written as we speak. Each new loved one who asks, how are you doing, summons me to search this new person for an answer. It's good that they ask, because I'm neglecting that interview with myself all too often these days. My answers are different every time.

Sometimes I even find myself answering with how Mom is doing, which seems inextricable from my own feelings. Yesterday Mom explained quite lucidly and with great fervor that she wants to be more a part of her own house: daily tasks, menu planning, various projects, etc. Things with which we did not want to burden her. But, as it is my mother, it is more a burden for her to be on the outside and feeling useless. She still has something to give in the midst of all this and she won't be robbed of that opportunity - not even by me.

Today change comes to me more as a challenge than a violent force. Do I have the courage to watch Mom use what little life she has left taking care of all of us? Do I have a choice? Not really (she's a Seufert woman), but I can choose how I respond, how I listen and whether I learn.

Day 87

My mother is still teaching me. For that, I am forever grateful for this day with her. Today she challenged me to listen.

To truly listen to her as she communicates her needs.

To truly listen to her in the smallest of decisions knowing that autonomy is a human right.

To truly listen to her in the difficult decisions that are easier to make once and then walk away from, but are essential to visit and revisit until her voice is acknowledged and her heart at peace.

My Tia and I made a trip to the ER this morning at Kaiser Redwood City because mom's NG (Nasal Gastric) Tube had come out of her nose partially. The nurses were kind, thorough and adept, which made our tiring 6 hour stay much more bearable. They replaced the tube gently and gave us some tips for future maintenance, which have been very helpful. Apparently, NG tubes are not typically used for this long. I can imagine why.

We had a couple of visits planned today, but I'm afraid the day just got away from us. For those of you who where not able to come, I'm truly sorry and will get in touch with you about rescheduling soon.

I confess I find myself weary today. Laid low by a world that insists on turning when it ought to know damn well that time stands still for this moment. Each day comes with its distractions and demands on my time. I make lists that sit scattered about the house met more with good intention than accomplishment.

Slow down, she says. Just go slow.

She still gets frustrated with me. She still gazes at me with those adoring, all-knowing eyes that turn me into a child again. She still flips me off. She still hugs me longer. Today my mom is still my mom. Today I have her and stubbornness and her tenderness and her wit. I saw all of those beautiful faces today. I was sad today, but I was strong. Because tonight my mother wished me good night like she has so many other nights.

Sleep with the angels, baby girl.

A Visitor's Guide

You have all been so wonderfully patient and understanding with your desire to see mom. So, I thought I'd put up some information that might help you schedule a visit if you would like to come.

First, 3-5pm is the most reliable and convenient visit times for us.

Second, we find that 3 people or less helps mom engage and enjoy conversation without taxing her too greatly.

Third, 20-30 minutes is ideal.

Fourth, if you or a member of your household is ill, I'm very sorry, but please phone to speak with her as we are trying to keep her environment free from infection.

Fifth, please phone us to let us know you're coming. The houseline is fine.

Sixth, please forgive us if we need to cancel at short notice.

I hope that's helpful. I'm really just trying to communicate our needs in answer to many who are asking. Please feel free to call, I'd be happy to talk with you.

Day 80

Hope.

It is so easy to lose hope. It takes courage not to let the grief of the loss that has not yet come steal the hope of what still can be. There is a dark, warm and inviting room that beckons the tormented to come and sit and forget; to close our eyes to the gnawing pain of a loved one in harm's way.

But, when we hole up too soon, we also close our eyes to the beauty, the wonder that it is before us. Hope opens your eyes. Yes. We see suffering more clearly. We also see miracles: the power of love when family comes together.

I ask you to hold tight to hope with me. Your hope gives my hope strength.

Mom's condition has progressed with great speed. She is returning home today from a brief hospital visit after her digestive system was not able to process food due to the spread of the cancer to her intestinal area, her stomach and her lungs. After consulting with the doctor's and talking with mom, we have decided to bring her home with hospice care.

I know many of you want to know how to help and the only thing I know to tell you is:

Do not lose hope. Our family may reach out to you for some practical needs and if you have anything you'd like to share or bring, you are welcome. Joshua came home last night and I know he'll need your support now too. We all do.

Thank you for joining us on this journey and know, the journey is not over...

Day 72

I can't tell you what a comfort it is to know that so many of you are out there reading this right now. You are each so essential to our lives and make them all the more meaningful with your continuous support.

Mom and I successfully got through out tests yesterday. I'm still awaiting my results, but we did meet with Dr. Pan this morning to discuss the results from mom's CAT Scan. As it turns out, the Folfirinox was not as effective as we had hoped. Although there are signs of improvement on the tumor in the Pancreas, the lesions on her liver have grown. She also has some accumulated fluid from the liver, which we'll need to keep an eye on.

So, our next step is to change her treatment from the Folfirinox to a combination of Gemcidabine and Tarceva. The Tarceva (a protein inhibitor) is a daily pill, which she's already begun taking. Gemcidabine (the chemo) will be given every week for one hour. She will have 3 weeks on, one week off and so on beginning next Tuesday. After 2 months, mom will have another scan to see if this new regimen is successfully halting the growth of the cancer.

The good news is that the side effects should be more manageable for mom. My hope is that she will find a renewed energy and appetite. Thanks to your support and encouragement we were successful in coping with the last treatment as I'm sure we will be in this. Please let me know if you have any questions, I'm here.

My love to you all.

Day 66

Round 4 complete! This first series of treatments is finally finished. Mom is feeling great. One of the most important thing we've learned over the past 2 months is the magic of nutrition! With the right foods at the right time, we have managed to bring the side effects of this aggressive treatment to its knees.

We've also learned, and continue to learn, what a beautiful support system we have in all of you. We had a lovely visit with Anne & Ken Helms who brought by a delicious lunch and caught us up on all of their comings and goings. They also made a kind offer for us to come visit in Monterey and I think the sea air will do mom some good!

Many of you have reached out to us to plan some quality visit time with our lovely sunshine girl. As promised, now that we have a better handle on our schedule and know the best times for visits, we will be able to begin planning those asap.

We've found that a 2-hour visit is ideal for mom. So, I will reach out to those of you that have expressed an interest in coming by. If you would like to plan a visit, please email me at jessicamgomes@gmail.com.

As I posted on the calendar, mom's CAT Scan is scheduled for 1pm on 4/4 and meeting to discuss the results with her oncologist, Dr. Pan, on 4/5. I will let you know what we here. As fate would have it, I am also receiving a test at 1pm on 4/4 to take another step in our path to have a baby. I'll be scheduling my 2nd surgery with 3 weeks from that date. So, I will keep you posted on my progress as well.

When we discovered that our tests were the same time, mom said, "Well, we said we would heal together. I guess we're right on track."

The other important thing we've learned is this: mom can rock bald as well as a sassy blond wig!

Day 56

It's been quite a big week at the Green Ranch...

Mom has come through 3 rounds of chemo and is heading strongly into round 4 next Tuesday, 3/27. We've had a great deal of success with some simple nutritional changes.

We decided to address her digestive needs with a diet designed in three phases through her 2 week cycle between chemo. As a result, her side effects have lessened significantly and she finds she has more energy throughout the day.

We've also learned that naps are a gift from God above! So, everyday mom enjoys a lovely afternoon lie down.

Also, mom is exploring her artistic expression. She'll be working on a 3-panel Tuscan installation (a.k.a. paint by numbers). As the sun decides to show up a bit more, we'll set her up in the back yard with an easel, a sun hat, scarf and overalls. After all, it's our motto here at the Green Ranch: To everything, add a little romance!

Speaking of romance... Ben is here!

Ben and I are officially Californians. For those of you who haven't seen my hunky honey in a some time, I highly recommend a viewing, I mean a visit. Ben has already started to settle in to his new Starbucks (on Jefferson & Woodside if you want to swing by to see him). He is still scoping out the perfect bike route up and down the hill and having fun exploring the area.

We're still setting up our space downstairs, but with all the work JG put into the new paint job it's already beginning to look like home. Thanks to all our friends and family that helped get Benj & I on our way. We couldn't have done it without you!

Oh, yeah... one more thing. Mom has a new look with a sexy blonde diva wig that quite simply, makes mom look like mom again! I'll be sure to throw a pic up as soon as I can get her to pose for one.

Important Dates:

3/27 - Round 4 Chemo

4/4 - CAT Scan

4/5 - Meeting with Dr. Pan

Day 40

We had 2 medical appointments today. Both went very well...

Anzonette, Nutritionist at Kaiser
Anzonette and I spoke on the phone. We both agreed that a more regimented nutrition schedule would help prevent some of mom's digestive struggles without the use of over-the-counter drugs like immodium and senacot. So, I've put a list together of low & high fiber foods, which will be interchanging as she goes through her chemo week.

Also, she heartily approved our interest in fish oil & curcumin, which are non-aggressive antioxidants that won't combat too much with the chemo and focus on restoring health to mom's digestive track. Basically, the name of the game is finding ways to allow the chemo to do its job while maintaining healthy digestion, nutrition and preventing inflammation and infection. The more of that we can do with good old fashioned nutrition, the healthier mom will be and thus the longer we'll be able to fight the cancer.

She's also looking into a fermented soy drink, called Haelan 951, which will help coat and restore cell growth in the digestive lining. I'll let you know if that becomes a part of our regimen. It is quite costly, so we'll really have to weigh the benefits, which I think will be considerable.

Dr. Pan
I finally met the magnificent Dr. Pan. He was pleased to see that mom was doing so well with the Folfirinox. He intends to keep her on it for 2 more rounds and then we'll do a CT scan on 4/4/12. We're going to meet with him the following day, on 4/5, so we will know then how effective the chemo has been thus far. I'll let you know as soon as we do.

Once we determine if the Folfirinox is doing its job by either decreasing or halting the growth of the cancer, then we'll decide where we go from there.

Also, there is a small update in my world...

I'm flying to Seattle on Thursday. I'm headed back to give my man a hand with the move and then the 2 of us will most likely drive back down in a uhaul. Ah the joys of moving. I also want to give my sister, Becca, a big blog hug for getting me up to Seattle - MUAH!

Thanks for keeping track of us.

Finding Our Feet

As some of you know, Mom has just finished round 2 of chemo. Well, I say finished, but in fact, each "round" is more accurately the whole 2 week cycle. We're learning that the few days after the bag has been removed (which was Thursday) are the hardest. She has actually come through the injections days with the strength and determination we all know and love in her.

Though Mom's pain hasn't been a problem, her fatigue and digestion have been the most effected. I'm sure some words of hope and encouragement would be most welcome right now. You have all been so wonderful.

Thank you Uncle Mark for the Kindle Fire. Mom has never much liked lying in bed, so having a Kindle to take to bed to play solitaire and read new cook books has been a great comfort.

Thanks to Aunt Roxi, Aunt Terri & Scottie for the Amazon bucks which will be well spent on various diversions for our healing lady.

Thanks to Dawn & Tom for the flowers (they showered us in beautiful flowers, which we arranged and placed around the house. Thanks also for the spa escape Dawn!

Thanks to Nancy Brooks who keeps us in encouraging cards and lovely thoughts (and her friends too!)

Thanks to Bethie for keeping me sane and being there whenever I call.

Thank you all for your prayers, understanding and patience in this time. Mom is dedicating all that strength to this fight and as many of you have said, "If anyone can beat this, it's Denise."

We have an appointment with Mom's oncologist, Dr. Pan, on Monday - as well as her dietician; so, I'll have much to report next week. Keep your thoughts high.