SURVIVING SHAME


Last Friday was pleasantly ordinary: doing small things about the house, shopping with a friend, Michelle, for special sandals to accommodate my increasing neuropathy, watch a DVD. So I went to bed at 10:30 pleasantly content.

I awoke to the Night of Horrors at midnight. I was so feverish that I was literally vibrating with freezing cold. I frantically started piling blankets upon the bed, turned off the AC, and burrowed into the bed to get warm. It was sometime soon after that that the diarrhea started. The kind I had never experienced before despite it's recurring presence in these entries. This time there was not a nano second between initial sensation and execution. I have no further memories so I will skip ahead to noon the next day. Relying solely on second-hand testimony, what happened next sounds like it was straight out of a Howard Hughes biography. Apparently Jeff finally realized that sleeping-in for me never meant noon so he entered my room where he found me completely out of it, and worse. I was covered in feces, as was the bed, the bedroom, and the bath. Horrified he called an ambulance and had me taken to the hospital where the incontinent diarrhea continued for three more days. And where I was repeatedly changed by nurses in the precise style and pleasantness of an older baby - long after the novelty has nauseatingly worn off.

This has been the most horrifying experience of my life. Even now, just days later, it feels impossibly surreal. Never might I have imagined such an ongoingly humiliating experience. I am a shame-based person born of a mother who couldn't say "shit" if she had a mouth full of it! But somehow I was able to simply surrender to it all as best I could. It helped that the first few days, the worst, I was completely weak and depleted from dehydration and had little excess energy to expend upon toleration or resistance. But still.

This is Thursday morning and I will be discharged within the next two hours. I have been here for five days and I cannot wait to leave. Not that I am not grateful for this medical staff; I am. Very much so. I have been given every conceivable test including an ultra sound of my gall bladder to rule out having to surgically remove it. And the source of all this mayhem? Salmonella! Ummhmm. Food poisoning. This is yet another good news/bad news story. On the positive side I am IMMENSELY grateful that it wasn't some further complication of my multiple diseases. Thank you. On the negative side: WHAT THE @$#%*&^# - aren't the aforementioned diseases (plural!) enough?! or as my usually philosophical friend, George, exclaimed: "Somehow this just isn't fair!" Of course it's not fair. But then nothing in life is fair. We blind ourselves to inequity all the time and soothe ourselves with folk tales of equality and good winning out over bad. It doesn't. Things just are as they are. And how they are is random, unfair, and completely absurd. The world abounds with evidence of this yet we prefer to focus upon the rare and heartwarming stories of some unrealistically ordered existence.

I think that the real challenge is to not lose a grounded sense of ourselves in the face of random absurdity, and especially, unfairness. Who really cares about unfairness. What people really care about is who you are being in the middle of the poop storm in which you find yourself. But even more importantly is searching for and locating your own footing in the storm so as not to lose a sense of yourself. We are here to be who we truly are, not some pleasant, pleasingly perfect replica of the real thing. Although, after this last week...

The nurse just gave me my parole papers. I am going to shower and leave this always chilled environment to go home where I will shave and shower again in my outdoor shower and bask in the warmth and the comfort of my garden sitting by the river and let the breeze waft away the memories of this room and all that happened here. It is over. It is done. And I am alive and delighted to be so...yes, even given the poop storm. Think of it this way: what else could my shame-mind possibly have to fear?

PEACHES AND PEONIES


I did go home and take the oxycodone and all it did was put me to sleep for a brief nap. Which, come to think about it is exactly what it had done the two times I took it in the middle of the night. So I arrived at the office of Leslie McKnight, my magical acupuncturist, with the pain intact and my mood sliding down an emotional sinkhole. The pain wasn't acute by any means but it was relentless and I just felt vulnerable and deeply discouraged. I still don't understand why it seemed so intense but it did and I told Leslie just how I was feeling. After taking my pulse she told me she believed the pain in my legs was related to my liver. And I do know that Velcade adversely affects the liver. She treated my legs with what she called Chinese goop and then needled me. While lying there in the semi-dark listening to soft Asian-like music I slowly became aware that I was no longer feeling any pain ..........and I could observe my mood steadily improve until I was actually feeling good and happy to be alive.

And I am happy to be alive. Two years ago, shortly after I was first diagnosed, I pressed my primary care physician to tell me how long I had to live. My oncologist had sidestepped the question telling me only that I had an aggressive form of Myeloma. But my physician answered me telling me I had about two years. And here I am. Here. Right here at home living independently.(with a little help) Going out to lunch. Reading in the garden next to the river. Pissin n moanin about the chemo side- effects. Even my final-stage-kidneys are holding there own during this cancer- chemo onslaught. I can't say I'm always enjoying this ride but I am definitely happy to be alive.

And I have never before experienced such a profound change as I did at the hands of Leslie. So lying there filled with gratitude for how I was feeling, for being alive, I decided to punctuate my experience by a small gesture of appreciation of this amazing life. I went to the market and bought a bouquet of bright flowers for my kitchen and some fresh peaches for my palette as a way of reaffirming my appreciation for the commonplace beauty and deliciousness of life. I have been pain-free since that session. Tomorrow is another Spa day and after that I have no idea. But I do know that the flowers are still bright and the peaches fresh and exquisite. And I am happy to be here, right here, to see and taste them.

MAKING LEMONADE

It has been harder and harder to remain positive in the midst of the pain and discomfort I feel. I have felt this lowgrade sense of irritability much of the time. It's really annoying. Because I really don't want to be spending my time feeling like this. My spa nurse just asked me if there was anything that gave me relief and I told her that 5mg of Oxycodone did but I only took it when the pain woke me in the middle of the night. She encouraged me to take it whenever I wanted to. It was then that I realized how silly I have been being. The Oxycodone is left over from 2007 so it feels somehow illicit. I don't know what I am afraid of: becoming Rush Limbaugh!!! I'm going to take one of those little suckers as soon as I get home!

I omitted a very important piece of information in my last posting. The Velcade is working. As annoying as the side effects are, what is most important is that the chemotherapy is working and that the cancer cells are receding. So it seems I am heading toward remission. And that's a good thing; a very, very good thing.

And continuing this morning's report on good news I want to provide an update on the South Florida Water Commisssion's response to my garden requests. They did dig up and move two of the best coconut palm trees onto my property. So we saved two of the seven. In the meantime the entire project has been postponed for a few months. I am also engaged in negotiating with them to fasttrack the permitting process to allow me to expand the little sunset bench to a 12X20 deck over the river. So far they seem to be accomodating. I am now focused not so much on what is being destroyed but more on what may be possible. I found a really great landscape designer and I am looking forward to creating a whole new landscape creation that accents the penninsula and the surrounding water.
Change is inevitable, whether I like it or not, so I might as well choose it. And while I'm at it, make it beautiful!

I have wanted to write before now but I have been either too sick or too tired to write. This chemotherapy has been beating up me quite a bit. I manage to see people and take care of some non-physical responsibilities around the house but little more. It seems that the past two months has been about little else other than managing the side effects of the chemo. It's rather boring.

Right now it's 3:30 and I have been here in the infusion room receiving a blood transfusion since 9:30. I was anemic...very, very anemic. A week ago I went to Boston to have my blood drawn and tested at Dana-Farber and to see the Wizard - my oncologist. I had not seen him since I began this Velcade regimen and I was enthusiastically looking forward to seeing him and have him evaluate me and the progress of the chemotherapy. Of course, what I really wanted was for him to tell me I was once again in remission and could stop the velcade. In fact what he did was cut back my steroids from 40 four times each week to 10 twice a week. Given how strong the steroids are that decision was huge. He also reduced the strength of the velcade and gave me another week of drug holiday. So I will feel the effects of the new protocol beginning next week. Hopefully it will be more benign than it has been.

It is now three days later. The transfusion certainly helped restore some of my energy but I think that I had constructed a very different expectation of how I would be afterward. I envisioned myself as feeling much more normal and having the same level of zippitty-do energy that my restless mind thinks I ought to have.
But I don't. I am still very tired and lacking even basic energy most of the time. And my legs now ache all the time. So all I really want to do is sit, and sometimes sleep. And it isn't supposed to be this way. I know because I compare how I am now with how I was before the operation. Or before the chemo. Or before this morning. That's how I should be feeling not this! Anything but this! And so once again, and ever more powerfully, I am confronted with my obstinate resistance to what is. To where I am and what I am. To my present. To the ever present choice of where I am going to rest my focus: the pain and disappointment or the possibility contained in this ever-changing present.
I want my mother!