Thursday, August 23, 2012

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?

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.

Sunday, August 5, 2012

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. 

Wednesday, August 1, 2012

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.