“I have to admit, I don’t know much about staging,” my neighbor said when I told her I had stage 4 colon cancer. “What does stage 4 mean?”
“Well,” I replied, “There’s no stage 5.”
I decided to try to write something about the predicament I find myself in, since over the years I’ve had too many people I cared deeply about die when I hadn’t even known they were sick! I didn’t want to follow suit.
I don’t find myself afraid of facing death. I’m just (as I’ve always been) a glutton at heart and am not at all done with experiencing the amazing beauty around us always. I’ve appreciated it with a kind of ferocity over the whole of my life and I’m still not done. As they say, life is a terminal condition and death is one of the most significant experiences we will have in our lifetimes. It comes at different times for all of us, and we may not always know when those times are, but we certainly know that we will all die. Nothing to be afraid of. We all do it.
During the first week of January 2014, I was diagnosed with stage 4 colon cancer. In fact, I’ve come to understand that it was/is stage 4+ colon cancer, and that my chances of living very long at all are quite small. I believe it is important to speak of things like this. Perhaps my writing will help one of you recognize this process sooner than I did, either in yourselves or in your clients, and have better chances of longer survival than I do. At this point, whatever I can do to be of service, I wish to do.
The type of cancer I have, an adenocarcinoma, takes a long time to develop and grow, but it does so exponentially. At first, a few cells double, then as years go by, masses of tissue double. When I was diagnosed, I had a nearly complete obstruction in my sigmoid colon as well as three small (<1 centimeter) tumors in my lungs and a liver perfectly stuffed with adenocarcinoma. By perfectly stuffed, I mean that it appeared that no more could fit. My CEA, cancer marker values, were astronomically high.
I had been growing increasingly tired for a long time. Many of you know that I was a world-class athlete and enjoyed long forays into the wilderness. To accomplish these things when I wanted, I spent my life training, both during my heyday and afterward. When my cancer must have really taken off, I was living in Seattle in a lakefront uninsulated cottage and paddled my sea kayak (raced myself, of course) back and forth to my office – ten miles round trip. I did this in all kinds of weather, all year long. I was so well trained from all these miles that I began racing kayaks and surfskis. Although I was ‘old’ and a woman, I did very well in races. When I began to get really tired, I thought that perhaps I was finally starting to feel the age that everyone thought I’d have begun to feel long ago. Also, going really fast hurts, so part of our race training was to learn not to be distracted by pain. Sometimes, this doesn’t work for us. Other athletes I’ve known who also had cancer reported these same rationalizations. I started to lose races.
Soon enough, my human-powered commuting style began to get more challenging and then even my workday took its toll. By late 2013, all I could manage to do was work, make myself dinner, then sleep. I knew something was very wrong. All I could eat were soups, and I was was having heartburn and esophageal spasms. I thought I had an ulcer. I tested positive for H. pylori and did the heavy antibiotic regimen. No change and even more time went by. Pretty severe back pain followed, which I tried to solve with Rolfing® Structural Integration (SI) and chiropractic care. My Rolfer noticed that my ascending colon was packed, and we both wondered about this. I was hardly able to stay upright for a CE class I was taking. Finally, in early January, I had an endoscopy and two attempts at a colonoscopy before a CT scan revealed the true nature of the situation. Surprise! By the way, the back pain was due to the huge bulk of my liver acting on my spine, both compressing and twisting it. I no longer experience this, but suspect I will again in the future.
Now, twenty-two infusions, two chemo ports, and a year later, I know a lot more. I know that cancer is defined as a failure of the immune system. At first I resisted this, since every single blood draw I’ve had (and believe me, there have been many) shows perfect results in all but my liver enzymes and cancer marker (CEA). My immune system appears to be perfect – even after all this chemo! In fact, it can’t be perfect. Cancer is a pathology associated with a failure somewhere in the immune system, which is itself unfathomably complex. We generally get only the most basic look at it and don’t really grasp how it works, so finding the breach in the wall is a nearly impossible task. Someday, I hope that we’ll be able to measure all of these components and thus treat people with cancer more humanely and in a more targeted fashion, but now, that’s not the case. I’m very fortunate in that I experience less of the horrors of chemo than most people – or perhaps, like my symptoms, I am more able to ignore them. Still, my life is very different: I can only work a session at a time here and there, and, finally, I am too weak to climb back onto my beloved little boats if I flip over, so my sources of joy are having to change. Those of you who know me also know that it is not in my personality to sit back and wait to succumb, so I am learning and trying what I can, even though I’m told it is nearly futile.
I have recently come to understand (and this has been confirmed by my doctors) that up to 99% of the mass of tumors is simply tissue, unable to metastasize. The bad stuff, the cancer stem cells, which are metastasis central, make up about 1%, so are invisible. They call these cancer stem cells micrometastases. Chemo targets tumor tissue, but has no effect on cancer stem cells, so as I’ve mentioned to my oncologist, no matter how much of the bulk of my tumors vanishes, it may look good, but it doesn’t really change my situation. The only effective weapon against cancer stem cells is our own immune system. Again, my oncologist confirmed this. What chemo does by reducing tumor size is diminish the overall metabolic stress on my whole system, which I hope makes it easier for my immune system to fight back. Chemo is also known to damage the immune system, and even though mine still looks fine by normal parameters, we already know that it has some yet undefined problems and maybe chemo is hurting that bit more. This is the rub. We have to make choices we don’t know the consequences of, and the stakes are as high as they get. When I was first diagnosed, I was so close to death that chemo was a no-brainer. There wasn’t any time. Now, my tumor load is very much diminished and I have some choices.
I’ve chosen to continue chemo for now, but that may change. I have recently added a protocol of supplements that are chosen to increase my overall health, target cancer cells, reduce inflammation, and stimulate my immune system. We’ll see how it goes. We are all experiments. Recently the cancer seems to have begun to be more successful in resisting the chemo. In other words, there must have been successful mutations over the many infusions over the past year, and the drugs are less effective at stemming the tide. I hadn’t realized that my doctors had been throwing almost everything they have at me at once, so there isn’t much worth taking left to try. There are a few clinical trials, but they’re also not often worth the poisons involved. I’ll be learning about what’s left very soon and will have to make some hard choices. Just so you know, when faced with these for real, they are simpler and clearer than I’d have imagined. Hard choices are just that: hard, but they aren’t at all impossible. We are stronger than we think.
This has been and will likely continue to be my most significant life journey. I have processed more in the past few months than could be believed. It’s a great gift. Had I simply been hit by a truck, I wouldn’t ever know how much I am loved or grasp the world in the way I can now. Cancer has been a gift more than a burden. I know that many people articulate this, and that if you’re not ‘in it’, it’s difficult to believe – but honestly, it’s the truth.
Even though I’ve been through over a year of chemo, I somehow still don’t look like I have stage 4 colon cancer. This allows me and others I’m around to forget it sometimes and just live unburdened. I am very lucky.
I’ve been asked how having colon cancer has affected my practice. The answer is: a lot. I simply haven’t the energy to work like I did. When I began my practice in 1991, I experimented with different workloads. I figured out what schedule left me plenty of recovery time and the ability to be my most present and whole self when my clients walked through my door. I imagine this is different for all of us. I’ve always scheduled with longevity in mind, so I worked three full days a week. Many Rolfers work much longer weeks, but I didn’t choose to. At this point in my illness, working three full days a week is a pipe dream. I am unable to work on any kind of regular schedule, but choose to keep my office and shoulder the expense involved in order to have the privilege of working as I can. I earn far less than it costs me to keep my door open. I treasure the time I can spend where I can focus completely on someone else. This past year has been entirely too much about me. In my office, I leave my cancer at the door and try my best to improve someone else’s condition. I am grateful to pay for the opportunity.
What I am becoming increasingly aware of is the needs of the others in my life. There are many more than I could have believed in the past, and many of them fret. They need me to fight, to keep searching for a way – any way – to attempt to prevail. They desperately want me to stay here. I try my best to evaluate whatever is out there and to choose my path(s) carefully. Honestly, my situation is grave, but I haven’t yet felt desperate. There’s still time if I feel I need to go there, but I have also come to realize how many in our world prey on desperation. It is difficult to watch the people who love me grieve when I can’t do anything about it.
My clients have had a range of reactions to my diagnosis. I wrote a letter to them all when I first learned of it, not disclosing the stage. Some people have simply vanished. I, of course, know them all well, so understand their fears. Others have written, stayed in touch, asked to visit me, offered all kinds of help, asked to schedule with me as possible, prayed long and hard via many belief systems. They are a strong, precious bunch. I am humbled by them again and again.
I decided to write a blog at caringbridge. org because I was overwhelmed by the sheer numbers of people who cared. It is populated by family, clients, friends old and new, athletes, colleagues, even people I don’t know. There have been over 7,000 (yes – three zeros!) visits since early 2014, and I am continually floored by the kindness, love, and community shared there. Anyone can join, so I invite you all to visit if you like. Just go to www.caringbridge.org and search for Sherri Cassuto. The blog is called “In The Belly of The Whale.” Remember to read the home page to learn why.
My world is narrowing and in all likelihood will continue to do so. I just returned from a trip to Florida where I spent some time at a surfing beach. Understand that the water is my home. I hadn’t realized how cold the water would be there, so hadn’t brought a wetsuit. None of the shops in the area rented them, so I just watched the waves curl and imagined the rides. I hope that the next time I go there (I have family in Florida), I will still be capable of surfing. This feels like a rapid, unpredictable form of aging. It’d be simply fascinating if my life wasn’t in the balance.
On the other hand, I don’t have to worry about things like dementia, having enough money if I live too long, losing all of my friends . . . . I seem to be getting out earlier than I’d have chosen, but all of our paths are what they are, and I have certainly made the most I could of mine.
I don’t know where else this journey will be taking me, but I have a ticket and a good seat. If I believe that there’s a good reason to tell you more, I’ll submit again. In the meantime, I wanted to say all of this to you, my colleagues, and to also articulate how grateful I am to have done the good work I have amongst you. I wish I could do more, since my work is now dimensionally better than it has ever been, but we can only do what we can. I still follow the path of the glutton.
By all means, get a colonoscopy. I wish you all good health, happiness, enlightenment, and joy. My love to you all.
