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.

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