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. 

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