Heather Stoker

@north-sea | contributor
I've always had a strong sense of justice, a penchant for speaking up (often to my own detriment) and a tendency to hyper-focus on the things that matter most to me. This year, I learned that I have Stage IV Colon Cancer. To help me deal with this, I've started journaling and blogging. It's focus is geared toward the emotional and mental experience of someone learning to live with a medical diagnosis that will more likely than not cut their life short significantly, and the uncertainty of not knowing how long they have left. It's about rises and dips, doctors and scans, and driving forward into the fog of life with death as the backseat driver.
Heather Stoker

Planing for Your Funeral and Wishes With Stage 4 Colon Cancer

“You’ll live to dance another day,It’s just now you’ll have to dance, for the two of us,So stop looking so damn depressedAnd sing with all your heart that the Queen is dead”– Frank Turner, “Long Live the Queen” I toured the cemetery in a Death Cab for Cutie t-shirt and a set of pigtail braids. No, not the main area with multiple headstones cloistered together. I toured the “new” area, which looked far more like a field or a vacant lot than just a cemetery. It’s easy to miss the sign identifying what this ground is intended to be used for. In the center, a community scattering ground for cremated ashes with one semi-large monument in the middle. At first, that would seem to be the only thing here, but a walk through the grassy, weeded grounds reveal perhaps a dozen more stones and rocks spaced out; each commemorating the life of a loved one who has died in the past two years. This area is simple and quiet, with an understated and almost semi-private feel. It reinforces the feeling that the space is “a little secret” between those in the ground and those who are seeking them out for a visit. I imagine the few who reside here whispering softly to each other, underfoot of visitors. I wander and glance at the stones of my future neighbors. A 38-year-old man, also gone before his time; a 70-year-old beloved “wife, mother, and grandmother…” The younger man is just a couple of years younger than I am. His stone has rocks and shells around it, which no doubt meant something special to to him or to his family. I think about my son, and how much he would love to decorate the area around my name stone with some shells and rocks he collected. Perusing them, I decide that I like my future company, and my fellow fertilizers for this field. The “new” area is reserved for people who have decided they wish to have a natural burial. One that is free of formaldehyde and other environmentally-harmful chemicals. One that substitutes a heavy, closed casket for a quiet shroud. The idea is to let us decompose. To become food for worms, and to allow us to help grow these grasses and weeds that lie above us. It wasn’t until I learned about the idea of a “natural burial,” as a viable option that I found tranquility of mind with today’s modern post-death practices. I mean, they are really quite disturbing when you think about them. I don’t want someone manipulating my body and pumping it full of chemicals in order to set it up for a “pretty” viewing. I want people to remember me as the “me” they knew me as when I alive. No last images of Heather on display like some wax museum imposter overdone version of her former self are necessary. The other major alternative (cremation) is no less disarming to me. This is not like the cremation ceremony of old, where I am nobly placed on a boat, then alighted with a fire arrow on my way out to sea. Nope! Today’s cremation is literally just a slapping of my naked corpse and toe tag on a cold metal conveyer and rolled into an inferno. Product in, product out, all in another day’s work. No thank you. Uh uh. Not at all. But a natural burial? This is a simplicity I will take. Just clean me, cover me in a shroud and give me a respectful burial. Please place a small stone to mark the location and to remember me by, and then give me my literal opportunity to “push up daisies.” I will take that. Humans were meant to decompose, just like all of the other animals. And just like them, we were meant to give our nutrients back to the earth, instead of poisoning it further with chemicals. I can picture my family visiting me here in this understated lot, perhaps near the shade. I can see my daughter planting flowers. This lot is just a block and a turn away from downtown Yellow Springs, the hippie capital of southwest Ohio. I wonder if, when they visit, they will stop by the iconic pizza joint nearby or some other local establishment to help support it, perhaps while sharing some memories of me. These visions of the future haven’t always been so peaceful. For the longest time, they filled me only with a deep, deep sorrow. Resentment over having to even make these plans in my early 40s. Mourning over the irreplaceable loss of not getting to stay here with my family. Frank Turner is one of my favorite musical artists of all time, but that still didn’t stop me from avoiding his song, “Long Live the Queen” for the longest time, because it was about saying goodbye to and celebrating the life of a friend of his who had also died young of a long sickness. I just wasn’t ready to process my own death in such a celebratory manner. Not quite yet. But over the past year or so, I have been doing the hard work. The inside work. So today? I allow the visions to come. Stage IV colon cancer. The same disease that Chadwick Boseman died of. And at almost exactly the same age. That shocking diagnosis when it hits you, and then the cancer metastasizes. And then you are faced with a death sentence rolling toward you at a far quicker rate than you could ever imagine. You run through all of the phases. Why did this happen to me? What do you mean it’s incurable? The shock that technology hadn’t advanced enough by this point to present more lines of chemo and with it a longer prognosis (as is the case with metastatic breast cancer). In my darkest moments, I question whether my inner work has been successful. But in moments like yesterday and today, I am able to know that it has. To seek out and to stare directly into the eyes of the lives that will live beyond yourself takes a level of awareness that few are forced to grasp until they are very old. Taking a walk past your future consciousnesses and finding peace instead of anguish there, is quite a remarkable thing. What I have found is that not only am I able to do this now, I need to do it. I need to face the reality that I am most likely within my last six months and possibly sooner. Since my decline might begin at any time, I need to make sure my husband knows what my wishes are so he does not get stuck having to make these decisions at a later time. I need to take care of this now, so when I pass away later he needs only to pick up the phone and call the funeral home to take care of everything else. This realization has opened the door and allowed me to finally have some of those other big discussions, which I was previously unable to handle. Discussions of what my wishes are for my family after I am gone. It’s not lost on me that there will likely be 40 years of life remaining for my husband after I pass. Do we plan for him to be interred next to me? What if he finds somebody else? While I won’t disclose everything spoken of, I did let him know that I am OK with that (moving on) if some day he chooses to. We both agreed that he wants to continue to raise our children as we would have raised them together, and I trust he will do that with every ounce of my being. But there is more to it than just that. I am asking him to not take those moments for granted. I want him to see them for me too. I want him to celebrate the milestones with me. I want him to dance for one more of us. It was then that he finally told me what he wanted to do with the payout from my life insurance policy. We had each purchased term life insurance so inexpensively several years ago, when both of us were the image of healthiness. We never imagined then that we’d actually ever use it. He wants to use it to buy that property by or on a lake. The one we had always wanted to buy together. The house that we would bring our children on vacation to. The house that our grandchildren would happily come visit us at when we got older. No sight fills me with joy more than the sight of my children and my family having fun. And I have visions of it now. In my mind, I can clearly see them there. Spending time with each other and creating so many new memories with each other. Memories of love and memories of laughter. I see future grandchildren dancing around and filling Abe’s heart and home with love as he grows older. Maybe a tree can be planted there in my memory that can grow older too. It was our dream. I was supposed to be in those future memories. But now it must be theirs. At an earlier phase of my mourning, I would have focused on the dejection of being cut out of that dream. But today no other thought could fill me with a greater harmony or pleasure. It will not just be a gathering place for them. It can be family legacy. A better legacy than the kind passed to me. A legacy that I created. And as these years spin into decades, you will also find me spinning, as the dance is carried forward for just one more of us.

Heather Stoker

How the COVID-19 Outbreak Affects Patients With Terminal Cancer

As I stared at my shoes In the ICU That reeked of piss and 409 And I rationed my breaths As I said to myself That I’d already taken too much today As each descending peak On the LCD Took you a little farther away from me. Away from me… — Death Cab for Cutie, “What Sarah Said” People with stage 4 cancer have nerves of steel. We’ve dealt with dire predictions. We’ve grown comfortable with uncertainty and fear. We’ve stared into the faces of our own mortality. In my experience, it takes a lot to shake us. As someone with stage 4 cancer myself, I can tell you that my brain has gone to many places and has been through many phases over the course of the past several weeks: Three to four weeks ago, I remember thinking that I’ve withstood so many rounds of having my hopes crushed and worst case scenarios that if I actually caught coronavirus , I would pretty much at that point just be dumbfounded, have one last drink and say goodbye. I even entertained the thought that death from the virus might actually be less painful and drawn out than  cancer … Two to three weeks ago, I remember feeling that it seemed as if the rest of the world had — finally — caught up with how I’ve felt every day for the past 18 months. They are finally experiencing what it is like to have your whole world turned upside down. They are feeling the tiniest shadow of what it’s like to worry about getting sick or dying, and to not know what is coming next. I felt for the world, but at the same time felt oddly comforted to not feel completely alone in feeling that way. Two weeks ago, the reports started flooding in from Italy. There were stories of not being able to save everyone, leaving the elderly and persons with co-morbidities to die without treatment since there weren’t enough ventilators to go around. They were taking ventilators away from people who were deemed to not have enough life years left to be “worth saving” in favor of those who did. I took deep, hard, mental stock for the first time that people like me were now considered to be acceptable sacrifices for the otherwise healthy and newly scared people who might catch the virus. One to two weeks ago, I learned that Washington State had briefed its medicalpersonnel on a triage plan very similar to that of Italy’s — persons 80 and over or persons under 80 with a co-morbidity scale of five or more were to be refused treatment as soon as need approached the level of ventilators available. The message came to me via a post from Washington State physician Dr. Morhaf Al Achkar, who has stage 4 lung  cancer himself, stating that his own cancer put him on the scale at six. One week ago, I read this article . This was the first time I’d read about the experience of someone dying from this virus. It was not, as I’d imagined several weeks earlier, a quick and relatively painless death. It was torture. You basically slowly drown to death on your own lung fluid. Think this isn’t torture? Try waterboarding. And in the past week? I’ve witnessed politicians and internet trolls coming out of the woodwork to say that sacrificing some lives for the sake of the greater economy was the best plan. I’ve read about lupus patients being denied medication because our presidentsaid it could be used against COVID-19 , despite very dubious evidence to support that position. I’ve read about nurses in hospitals who are not only concerned about their supplies of ventilators and masks, but painkillers, too. As you can imagine, all of these events have had a profound impact on the cancer community as a whole, but especially among those of us with stage 4 (terminal) cancer . Concurrent with all of the events above, I also read about several things that were happening specifically to those of us within the cancer community: 1. I’ve heard about clinical trials being cancelled or in danger of being canceled. Trials that stage 4 patients have been counting on for a chance to extend their lives. Trials that they went off chemo several weeks prior to in order to even qualify. 2. I’ve heard about surgeries being cancelled. Surgeries to remove tumors and disease have been put on the shelf until some point in the unknown future. 3. I’ve heard in some cases, chemotherapy itself is being cancelled, as hospitals and doctors have to make the tough choices as to whether bringing someone in for treatment is more or less dangerous than the risk of them getting further immune-compromised, or possibly even being exposed to the virus while going in for treatment. Terminal cancer is scary enough. Terminal  cancer without treatment is the wild, wild, west. All of this has put myself, and many others like me, in a very particular psychological and emotional state. I worry about my own clinical trial that I am depending on to extend my life. I worry about people who feel invincible ignoring social distancing rules and exposing my family to the virus. I worry about the country “opening up” again and all hospitals being so overloaded that I will need to hide in my bunker to protect myself for the rest of the time that I have left on this earth. I worry about what will happen if my husband, who is my primary caretaker, gets this virus. I wonder what will happen if I get this virus… I have nightmares of being locked up with the other people not deemed worth saving in the hospital, left to die without anyone I love around me. I get visions of being tossed into the wheelbarrow of dead people being ushered down the street like in the “Monty Python” movie. Seems ridiculous, right? But it’s not really all that far from the truth. Some people who die of this virus, even on a ventilator, die, gasping for breath, all alone and away from their family. In some cases, people dying right now from any cause are quickly buried with maybe only one family member present. Everyone dying right now is being denied even the humblest of memorial services or even celebrations of life. Even if I die from cancer , I wonder — will anyone be able to come and say goodbye before I die? Will I ever get a memorial service? I can assure you that all of these things have led to some very serious and very disturbing conversations between my spouse and I behind closed doors. What if… there aren’t enough medical staff to come out to my home and give me hospice care when I get sick? What if… they begin rationing and diverting even pain medications away from people with cancer and to only those COVID-19 patients deemed worthy of saving? What if no matter whether how I die it is in utter, complete agony and without medical assistance? Should I even bother to inquire about treatment if I catch the virus and risk getting quarantined away without treatment and left to die? Do I even want a ventilator if I were offered one? I have a living will and have made it clear that I don’t want to die on one. Especially not all alone. I would only want one if it meant a chance at recovery and several more months at life. Is it even realistic to think that would be the case? I am not the only one feeling the weight of all of this right now. These are thoughts I should never, ever have to think, conversations I should never, ever have to have, and decisions I should never, ever have to make. Please think of me and others like me as you decide that it is OK to go back to life as usual. Please think of me and others like me as you decide that there are acceptable sacrifices to be made among the elderly and immune-compromised for the sake of the economy. Signed, A human being Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How Is the New Coronavirus Treated? How to Make Your Own Hand Sanitizer What You Should Know About Social Distancing During COVID-19 8 Soaps You Can Use to Help Prevent the Spread of Illness 10 Face Masks People With Chronic Illness Recommend

Heather Stoker

We Need a Word to Describe How it Feels to Anticipate Death

Where is her head? What is she thinking? Is she sleeping? What did she say? Is she looking out? Is she standing up? Where are her hands? Where are her eyes? Where is her head? Is she looking out? Is she sleeping? The National, “Where is Her Head” It’s the season of culminating moments. Last days of school. Talent shows. Dance Recitals. Graduations. A season of celebrating accomplishments before growing up and looking forward to the next life event. I view them from the vantage point of a Mom. Cherishing the moments that I can. Watching the ceremonial moment where my daughter walks through the halls of elementary school for the last time. And the realization hits me. There’s a good chance that I won’t be here to see my son do the same thing two years from now. In a second, the bottom fall out from beneath me. A happy moment becomes sad, and I’m bawling uncontrollably in my husband’s arms in front of other parents. The closest word that I can come up with for this moment is “grief.” I’m grieving all of the precious future moments that I won’t get to see my children experience. I’m jilted by how unfair it is that I don’t get to be here to see them. I’ve spent all of these years growing them from babies into where they are now, and I don’t get to stick around to see how far they bloom. Since my diagnosis last year with Stage 4 (terminal) cancer, this feeling runs like a river beneath the surface at all times. Though it only comes up and boils over occasionally, it never leaves. A knowing. An end point that gets casually glossed over in so many conversations by the living, who can still see the future by the scale of decades. “It goes by so quickly. They’ll be grown up before you know it!” A phrase built into our common vernacular that takes for granted that we will get to stay around to see it. And it so casually passes into conversation by those who don’t know or who forget that I won’t. So my brain lives on two planes, and I let the moments swirl; I breathe and let the casual sayings pass. A covert depression, hidden by someone who still functions. Who still makes and laughs at jokes. Who still smiles and looks “healthy.” I can experience the world as it is today, but am forever trapped by the pressing truth that tomorrow is a locked door I eventually can’t go beyond. Before my daughter’s recital, I take a moment to myself to gather my bearings before transitioning to who I must be for the day. What better place to do this than sitting on a porch, watching the clouds move and listening to the birds? But instead it hits me. There will be so many other days ahead, right here. With those same clouds and birds, and the wind. But there will no longer be a “me” here to witness them. There will be laughter in this yard, and a rushed piling in to go to events. There will be honking horns and music blaring and driving teenagers heading out on dates. And all of these sounds will go unheard by me. They will exist, but I won’t. Perhaps as unreal to me as photographs of younger versions of family members before I was born. And where will I be then? I don’t know. But I imagine that a bit of me will stay here in some way. Because my family is and was my full heart while I have/had the opportunity to be among them. Some of us just get to stay here longer than others. All you have left is the gratitude that you got to experience what you did. And you to try to let go of regrets for the time you wasted focusing on so many things that didn’t matter. There’s not an adequate word in our commonly used language to describe all of this. Yes, grief is close, but it is far from complete. It’s not a grief for something that’s already gone, but something that will be gone. It’s a grief for the loss of others to you and a grief for yourself all at once. And it’s terribly more complicated than just an empty feeling. Fear gets mixed in. It weaves in and out to remind me of the scariness of death itself. It likes to hide out and then step back in just when it is least welcome. And it doesn’t stop there. I fear being sick beyond comfort even more. And I fear my kids seeing me that way and having those memories. I am experiencing life before me while anticipating death within me. I am happy, loved, appreciative, whole, sad, angry and fearful all within the span of a day. We need a word to capture all of that. But we are woefully lacking. Because only those of us who have been struck by that existential slap get to experience it; that feeling can’t be appropriately captured and shared enough to become part of the language. And those who haven’t? They try not to think about death at all. So I will continue to let it sit, underneath, as my secret unnamed emotion. Follow this journey on the author’s blog.

Heather Stoker

How to Live While You're Still Alive With a Terminal Cancer Diagnosis

Love of mine, someday you will dieBut I’ll be close behind and I’ll follow you into the darkNo blinding light or tunnels to gates of whiteJust our hands clasped so tight, waiting for the hint of a sparkIf heaven and hell decide that they both are satisfiedAnd illuminate the no’s on their vacancy signsYou and me have seen everything to see from Bangkok to CalgaryAnd the soles of your shoes are all worn downThe time for sleep is nowBut it’s nothing to cry about’Cause we’ll hold each other soon in the blackest of roomsDeath Cab for Cutie, “I Will Follow You Into the Dark” In the year 2005, my husband and I were five years into our marriage and pregnant with our first child. Death Cab For Cutie’s “Plans” was on constant repeat. Our favorite song off of that record was “I Will Follow You Into the Dark.” This was a song that somehow managed to be simultaneously macabre and romantic: “If there’s no one beside you, when your soul departs, I will follow you into the dark.” At the time, I imagined this song being played at my funeral. I was going to be old and grey, and if I went before Abe he would soon be following after. I did not picture that there would be a span of decades between the two events. This breaks my heart so much, that I honestly really can’t bear to listen to it any more. Be that as it may, the song still gets many things right. The song speaks about religion in the context of fear and punishment. It evokes a state of mind that is so prevalent — especially in American culture. We get points for suffering. For working harder. For being busier than everyone else. And love? It is earned, rather than being freely given. Some children never get any. Or they get conditional love. A love encased in fear.  If there is a god, love is the god, not fear. Yet we so willingly jail ourselves into lives that don’t make us happy. That we feel like we can’t escape. We devote an endless trial of hours beside people we don’t really like and bosses we may never please. When we aren’t at work we still aren’t satisfied. We are annoyed that we are stuck in traffic. Or by a comment someone made. Or that they got our order wrong at the drive-through. Doesn’t it seem like we are almost built to make ourselves miserable? Every hour that we worry about work, every hour that we worry about what someone thinks of us, and every hour we stew and work ourselves up about that comment is another hour of our lives that we submit ourselves to misery. Now I am going to be blunt. When I received a terminal diagnosis. I stopped worrying about all of that crap. Because I learned what real problems actually look like. But you haven’t been in my shoes. You can think about it conceptually, but you won’t get it, until you’ve had that fear. Until you are out of options. Until you stare it in the face. The biggest cure for minor worries and proper perspective is a terminal diagnosis. To quote author Julie Yip-Williams (who documented her own experience from diagnosis to death from colon cancer in the book “The Unwinding of the Miracle”) “Life is wasted on the living.” You don’t have to imprison yourself. Roll down the windows, turn up the radio and sing during your daily commute. This is your life. Please live it. And leave the job behind when you leave for the day. When we live to work we lose far more than the brownie points we are hoping to gain. We lose time with our families, time spent on hobbies. We lose freedom and happiness. Love openly. Love without fear. Those who reject you can be easily removed from your tribe. They aren’t worth your time. You and me, have seen everything to see... Experience life with your loved ones. Invest in experiences. Go on a date with your husband. Take the kids to an amusement park. Go on the freaking vacation. These build love. These build memories. On various vacations with my husband, we swam at Trunk Bay. We went cave tubing in Belize. We zip-lined. We parasailed. We had breakfast overlooking Pike Street market in Seattle. We sat on an aft balcony of a cruise ship and watched St. Martin disappear (we also did other things not mentionable in this blog). On various vacations as a family, we screamed on roller coasters, we went down cruise ship water slides. We danced to Caribbean music on a catamaran. We swam in the ocean and watched them play, scream and smile. We watched the sunset. I don’t regret a single day or dollar that I invested in any of these experiences. Take the trip. Always take the trip. But you won’t really do these things just because you read this blog, will you? You may file it away somewhere in your brain alongside inspirational quotes that you think of every now and then. You won’t really change. Because death is now, and always will be, an abstract concept to you. Until someday it isn’t.

Heather Stoker

Lessons Learned While Coping With Stage 4 Colon Cancer

I wake up to rocking. I catch my breath, rise and look around. I am on a boat, surrounded by water on all sides. I can see the dock of the port we just left behind me. “Hey! Hey! I didn’t mean to get on! Can we please go back? I need to get off!” But the boat keeps moving. I realize that I am trapped. Just three months ago, I was sitting at home with what I thought was a nasty stomach bug. At the time, the word “cancer” was about as far from my brain as humanly possible. Instead, I sat on the couch (feeling guilty about missing work) and watched Outlander through severe abdominal pain. Pain which eventually turned into frequent, severe vomiting. I’m not going to provide you all of the details (and you also don’t want to hear them), but I found my way to an ER and got admitted. I felt terrible, but figured they would solve it and I would be able to get back to life as usual. They did a CT scan the next day. My husband brought the kids to visit, and the nurses said the on-call doctor wanted to speak with me on the phone. The news floored me. They had found a mass in my colon that was too big to be benign, and it would require surgery to remove it. As shocking as this was, I didn’t fall apart. This was all still very surreal. The surgeon who visited me the next day was like a “folksy” version of an older Dick Van Dyke. His tone was optimistic and confident. He told me that there would most likely be chemo afterward to prevent recurrence. OK. This is scary, but I’ve got this. I’m young! And the doctor smiles a lot. This is going to suck, but I’ve got this. Two weeks ago I was canoeing with my family and friends. Tomorrow I am getting surgery. A couple of weeks from now I will be back at work. A couple of months from now, I will be done with cancer. A wave hits the boat and knocks me over. Lesson #1 about cancer. You can’t count on doctors to explain everything to you. Especially when the news is bad. There had been a spot on my liver, but it was probably a hemangioma. The surgeon told me that he had a good look around when he had me open. He bragged about how he had cleared all of the margins, and how he had found a tiny nodule in the peritoneum (abdominal cavity) but had removed it. He was sure that the spot on my liver was a hemangioma. What I heard was, “Everything is clear! On to some mop-up chemo then I should be fine!” When my biopsy report was handed to me, the surgeon ran his finger over some of the paragraphs. “It’s a long report, but you want to pay attention to the sections on this page,” he said. There was no alarm in his voice, no indication that this report was dire. I nodded. Honestly, at the time I was more frustrated by being in the hospital and entirely focused on getting out of there. I find my bearings and start to rise, but another wave hits. I lurch over the rails and the wind is knocked out of my body. Alone in my house, and surrounded by quiet, I started googling my biopsy report. I focused on the technical details associated with the colon tumor. Eleven of 18 lymph nodes positive means Stage IIIC, which has a 53% 5-year survival rate. Wait. That can’t be true. There was nothing said or indicated to me when this report was handed to me that indicated that I had a 50/50 shot of living. I must be misunderstanding this. For the first time, something cracked and now the panic was seeping in. Even if I was wrong and my staging was slightly better, I was still looking at maybe a 70% shot at best. Hey, those are good odds…right? Great, here are dice. I’ll let you roll them on your life and then you can tell me how positive you feel. I can’t breathe. My head is spinning. How the fuck did I get here again? Lesson #2 about cancer. You don’t find out about everything right away. You wait for an appointment. You wait for a scan. It’s possible to be three months into a diagnosis and still not know the full extent of your initial diagnosis. I didn’t see an oncologist until two weeks after leaving the hospital, and a full month after my diagnosis. Yes, you read that right. My oncologist came into the room in a rush. He assumed that someone had explained my biopsy report. “We can possibly cure some stage three and four cancers,” he said. Wait, what? Well, I guess that confirms stage three, but why is he talking about stage four? “Well, of course there was that spot on your liver that needs to be taken a look at,” he said. You mean the hemangioma? “Well, I know that’s what he put in his report, but we’ll need to do a PET Scan to be sure,” he said. I puke down the sides of the rails. Going into the PET I had a sense of foreboding. There was something about the oncologist’s demeanor. He didn’t believe that the liver spot was a hemangioma. I found out later after getting the hospital CT reports that it had indicated that there were more masses found which were noted to be “suspicious for carcinoma.” My husband and I spent the weekend after the scan exchanging looks of fear. We parked the car in the parking lot, listening to a feed of the band Chvrches playing a music festival…“I know that there is a lot of bad shit going on in the world right now. So everybody — at the count of three — scream the word “fuck” at the top of your lungs! 1, 2, 3…” We both screamed, but it wasn’t nearly as cathartic as we wanted it to be. The boat is still rocking. When is this going to end? Can this really be happening? I want off now. Nobody is listening. “The PET did show activity in the liver.” Six masses, including my hemangioma, lit up like a Christmas tree. I couldn’t even get to the car. I sat on a bench outside the office, stared into the distance and repeated flatly over and over. What do I do now? How do I just go home? Go to the store? How do I even breathe? Of course, I had read the statistics on stage four colon cancer. They were really bad. Really, really bad. The boat continues it’s steady, plodding thrust forward. I look behind me. We’ve traveled too far now to see signs of the land that I left. I run to the front. Is that land? Or are my eyes just tricking me. My head says “no,” but my heart still clings to hope. Lesson #3 about cancer. You pass many islands on this journey. Hope and despair are only as far as the next scan, the next doctor’s visit. Uncertainty is your new normal. You have to find ways to cope or you will go “insane.” I processed it by writing about it, and then posting what I had read to Facebook. I know that sounds strange, but writing about it was the only way I could process…to continue breathing…to make your arms and limbs go through the motions of coming home to kids and the minutia of daily routine. My thoughts are racing, formless and so are my feelings. Writing them out forced structure. Other than family, it was the one thing I found to grasp onto as a means of dealing with this. I also searched for hope online. And got suckered in. Hope started to buoy me despite myself. There were so many stories of people making it many years with stage four. Perhaps I can beat this after all! Don’t get me wrong, I was still very scared but that thread of hope still crept in anyway. I had seen a surgeon locally who thought that I was resectable, but first he wanted an MRI. And then there was the matter of that nodule in the peritoneum. Remember that? “Well, we aren’t certain that’s all there was. The first surgery was an urgent situation and he might not have gotten to see it all,” I was told. I’m holding on tight, waiting for the ocean to settle down; for signs of hope on the horizon. Nothing settles. The waves keep hitting like sucker punches. The cumulative effect grinds away at me until I fall back down again. The next month brought several more setbacks: Genomic testing confirmed that I was resistant to certain medications that could help down the line. Second opinion oncologist tells me that I should see someone to help me deal with my own mortality. Second opinion surgeon is the first to explain MRI. Six spots are now 10-11. One stop surgical solution is no longer an option. We return to the initial surgeon who ordered it and he confirms and backtracks on all of his previous confidence about a one-stop surgical solution. Words heard from both surgeons were that “chances of long term survival are very small,” and “I was able to get similar cases an extra two years. I did have one last eight, but that was an exception.” Third opinion oncologist said, “Considering the peritoneal involvement and your number of positive lymph nodes, data doesn’t support a cure.” God damn it. Stop! You win, OK? I get it now. It’s finally gotten through to me. I’m never going back again, and the shore ahead? It’s not one that I want to reach. I am not getting out of this alive. So now what? I do chemo. I get an MRI on my abdomen. I meet with some surgeons at the Cleveland Clinic. I consider heading out to MSK. I do whatever the hell I can to stay here as long as I can. And I write about it. I write, to keep me sane. To cement the sadness and fear into structure. To spin despair into hope. To find meaning in all of this. To figure out how to live when doctors tell you that you are dying.

Heather Stoker

How It Felt When My Liver Resection Surgery Was Cancelled

“You don’t open your eyes for a while/You just breathe that moment down.” — Manchester Orchestra, “The Gold” It all begins like clockwork. At 5 a.m. you get your packet from desk J-1 then take it to the G-something desk for check in to the PAC-U. Couple by couple, they start filing in. One having surgery, the other a spouse or some other family connection. Couple by couple they get the speech about the process, the lockers and the pager. It will go off every two hours to give the significant other/spokesperson an update on how surgery has been going. We all sit and wait for our name to be called. They usher me back and transform me from a pedestrian to a patient. My clothes folded nicely in a fabric bag. The bar code clasped around my wrist. The hospital gown. The perfunctory questions I’ve answered many times before are rattled off again before they can begin sticking me with needles. The first prick fails to draw blood so they keep trying. The stinging pain left over is only a hint of the bruise to come. Blood drawn, they go back to retrieve the spouse and allow them wait with you — but only for a while. At 7:05 a.m., just as promised, they come to roll you to the OR. This isn’t my first time going into a surgery. But this is the first one since I’ve lost confidence that things will be OK. My first since losing faith in happy endings. The corridor has a sharp turn. My husband walks with me, as far as he can go. When I see the door that he can’t go past I start crying. It won’t stop. Perhaps it was intuition. Intuition is something I never used to believe in, but I do now. It started on the day my first oncologist ordered my PET scan to check for spread to the liver. It continued to follow me through every appointment those first few months. A feeling in the pit of my stomach that something wasn’t going to go right today. A feeling that almost always has been correct. I realize I must go through those doors alone. I wipe my tears away and give my husband a kiss and a reassuring smile to tell him I’m going to be OK before my escort rolls me through the doors into the unknown, leaving him behind. This is something I will do again some day. But this time, my first stop is outside of the OR. I answer more questions I’ve already provided answers to. They see the tears in my eyes and tell me they can give me something mild to calm my nerves and they do. I hear the music in the OR. The Backstreet Boys? Why is OR music always so terrible? They give me a warm blanket in case I am cold. The surgeon is running late.  When he arrives he is complaining about something. But the happy juice has started to hit by now. They ask me what surgery I was having that day, presumably to confirm my understanding of the procedures I would have. “Liver resection, possible colostomy reversal and HIPEC if determined necessary.” The “huddle” around me, comprised of anaesthesiologists, a resident, nurses and my liver surgeon, nod in unison. They roll me in, transfer me to the OR bed, stick a few more things into me and then comes the oxygen mask. “Think positive thoughts,” the lady holding my mask tells me. “Positive thoughts lead to positive outcomes.” Everything goes black after that. The next thing I remember is groggily opening my eyes whilst being rolled down the hall by two nurses. A clock is in plain sight and I can see it’s only been less than three hours since this began. This was supposed to be at least eight hours. Panic sets in. I run my hands down my abdomen and feel the ostomy bag still there. And no scar. Why was everything so quick? Didn’t they operate on me? ” No, they weren’t able to. “ Why not? I came up here to have a surgery and they did nothing? ” I’m afraid we don’t have the answers to that question. They are going to get your husband and he will have some answers.” My husband? What about my surgeon? As I gain a little bit more clarity, the full weight of what all of this means starts to come down on me. Something happened that was bad. I came up here to get a liver resection that could drastically increase my chances for survival and they did nothing! By this point, I am wailing out the words. The chronology is distorted, but I believe I started bawling. This causes them to try to shuffle me away into the farthest corner they can find. I believe that words I said after that may have been something similar to: Yes! Please roll the dying, crying cancer patient away before she makes someone feel uncomfortable! I make it back to a PAC-U bed and learn that my husband is coming. When he arrives, I ask, I hope you have some answers because they’ve told me nothing. He sits down next to me. “It’s everywhere.” It’s everywhere? How can that be? I had a peritoneal MRI that ruled out extensive spread. “The surgeon took some pictures of the monitor and showed them to me. They look pretty scary.” So now what? Do I just go home to die? The surgeon, who had run off to make himself busy doing rounds finally shows up. “The peritoneal disease was fairly extensive. I’ve never seen anyone tackle that much. The chemo was working for you, correct? It shrunk your liver tumors. I say that you go back to chemo. Maybe it will shrink some of the peritoneal area.” I don’t know when all of this spread occurred. Could all of this grown during the six weeks I’ve been off chemo waiting for this surgery? “Yes, that is possible, but hard to say.” A pause. “I’m sorry.” You know that sorry. You’ve seen it played out in your favorite medical drama. It’s sober, short and to the point. It’s the sorry that means, “There isn’t anything else that we can do for you.” Once the surgeon has left, the nurses can’t wait to get me out of there. Abe helps me to get clothes on since I am still wobbly. I observe the remnants of the morning on my body. I noticed that they changed my ostomy bag and didn’t bother cleaning off the leak that apparently went down my legs. I feel like cattle. Bruises and bandages to cover the incisions decorate both sides of my wrists and hands. I’ve got one spot in my abdomen where they presumably went in for the laparoscopy. And another huge bleeding, bandaged area from something stuck into and down my throat. They offer me water, but I can barely drink it or swallow. I am still hoarse. We check out and leave to begin the numb, mostly three-plus hour drive back home. We wonder what we are going to tell the kids. After all, we were supposed to have been away for several days. When we get arrive, we lay it out for them. When they took a look inside, they found more cancer, so they decided not to do the surgery. “Is Mommy going to die?” My son. He is going to be the most impacted by all of this. I exchange a look with my husband. Breathe it down. At some point, I probably will. But it isn’t going to happen tomorrow because Mommy doesn’t feel sick yet. And you need to know that Mom and Dad aren’t giving up. We are still looking for alternatives that will keep Mom alive for as long as she can. Have you ever seen three kids crying in fear of their mother dying? To say that this was difficult would be a huge understatement. My husband escapes upstairs and just loses it. He was long overdue. The following day, the searching for answers and solutions begins. Collecting names of recommended doctors who would be willing to do HIPEC and be aggressive with peritoneal disease. Collecting potential clinical trials I might be eligible for. This searching gives me the illusion of control. Because when I stop? I will just be sad. And it will be hard to begin moving again. There are so many things broken here. Broken promises. They never told me that liver resection would not occur if HIPEC was needed. They never told me that HIPEC would not occur unless the liver resection happened. Broken communication. How is it that the logistics of this were not discussed amongst the surgeons prior to my surgery? If HIPEC was never going to occur unless there was liver surgery, and liver resection was not going to occur if there was HIPEC, why did you have me consult with a HIPEC surgeon and put him on call to begin with? Why did you sell this to me as a combined operation? Broken trust. They promised a surgery and did nothing. They endangered my health by taking me off chemo for several weeks for a surgery that never happened. Broken empathy. Don’t leave me frightened and crying without answers as I am waking up and need them desperately. Don’t shove me in a corner for expressing sadness and pain and confusion. Don’t run off to do rounds and force my husband to break the news to me.  Don’t shrug it off like it’s no big deal that you put the length of my life and overall prognosis in jeopardy because you failed to discuss if-then scenarios before surgery amongst the surgical team. Finally, learn to read body language. Don’t try to push us out as quickly as possible because we are ruining the mood and vibe. The nurse was trying to crack jokes as she was taking all of my wires and needles out. This may be just another day for you. For me? It’s the day I get to tell my kids I’m going to die. I’m so very sorry if I’m being a downer. Broken health “care.” I think it goes like this: You buy a house because it has a great view. But as you look at that same view every day, it becomes commonplace. You start to not even notice it. I mean, it’s there every day. It’s getting pretty mundane and boring. You go into oncology (surgeon, oncologist, nurse, etc.) because you want to help people. But now you see people with cancer every day. The fact that they are dealing with big issues and dying is commonplace. You start to not even notice it. I mean, these people are there every day, cycling in and out. And some of them are such downers. It’s getting pretty mundane and boring. What is another day at the office or hospital for you is life-changing for me. It’s life-changing for my family. You sent me home without doing what you said you would. You sent me home with no hope and an “I’m sorry.” The moment you decided that you couldn’t or wouldn’t do anything you distanced yourself as protection. “I’m sorry” is a shield. Yesterday, I groggily opened my eyes. I breathed it in. Something bad had happened. I’m still breathing it in. My appetite has left. My limbs feel heavy. I keep catching myself staring straight ahead but looking at and focusing on nothing. I realize a part of me got broken as well: My trust in the surgical team I chose. My trust in my own decision making. Did we go with the wrong team? I didn’t see this coming. All of the hope and spirit that was hanging on getting a liver resection that would improve my prognosis and give me time? Shattered. As I wade through the muddy waters of second opinions and second chances, I hope to forge together a new plan for hope. Because I am desperately in need to some glue that can help me try to reassemble all of these broken pieces.

Heather Stoker

10 Silver Linings to My Stage 4 Cancer Diagnosis

On a Thursday in December I find myself at the bottom of another valley. Between cycles four and five of chemo. Waiting for the holidays. Waiting for what comes after the holidays. Waiting for the set of scans in my peritoneum and the rest of my body. Waiting to find out news that will either give me a sliver of hope or reprieve for the first time since my diagnosis, or send me reeling once more into panic and despair. I honestly have no idea which way this one will go. I have lost all shreds of any false sense of faith that I’ve had all of my life that things will somehow still be OK in the end. All of my life has been about working toward better things in the future. Now I know that they will not be better. I’ve never experienced that before. It’s an unrelenting sensation that the future will only bring sadness. These words aren’t mine. They are my husband’s. Cancer hasn’t just changed me. It’s changed him. What I do know is that those scans will show what they will show. Neither of us have the power or control to change any of it. In this valley of waiting there is uncertainty. In this valley of waiting, we can only look up at the looming clouds and wonder what is behind them. Since I’m waiting, and the sky seems especially dark, I want to try an exercise. I am going to look directly at those clouds, squint my eyes for a moment and try to find some silver linings. If, for no other reason than that it feels bad to feel bad. And it certainly isn’t helping anything. So here we go. Silver lining number one is that this experience has re-affirmed that the person I chose to spend my life with was the right one. I realize that nobody in this world has ever loved me more. I realize that he has loved me even during times that I have felt like I have not been deserving of such love. Silver lining number two: I’m doing parenting OK. And giving them things I struggled to have as a child. I have brought into this world three of the most unique and spirited children that I could have ever have hoped to imagine. What’s funny is that during the early years of my marriage, I probably could have been talked into not having any at all. I wasn’t sure that I could live up to the ideal of motherhood. I’m still not sure. I proudly wear a T-shirt that says “world’s okayest Mom.” Because I know that I’m not the best. But I do know that I love them all with every fiber of my being. Unconditionally. And I know that they know that as well. My reward is getting to see the amazing people they are growing into. I am just the right Mom for them. The right Mom to teach my oldest daughter to stand up for what she believes in, to teach my middle child to use her natural social talents for good. To remind her to use her big heart with every action she takes. I am the right Mom to stand up for my son when I see him dumped from preschool to preschool because he is challenging. To get him the diagnosis he needs. To get him the support and treatment he needs. So I can fight for him when teachers label him. So that I can lift up the self-esteem of a boy who has been programmed to believe that he is “bad” and has begun to stop trying. So that I can see him grow into the confident, happy, and gifted third grader that I see today. No, I am not the world’s best mom. But I am the world’s best possible mom for my kids. Silver lining number three is that my kids are old enough to remember me when I am gone. It breaks my heart to hear from other young mothers diagnosed with cancer with very young children or babies. They don’t know whether they will be here long enough for their kids to be old enough to remember them. Just thinking about that breaks me. Silver lining number four is that my husband will take care of them when I’m gone, and continue to steer my children to the best possible versions of their amazing selves. Because he is the world’s best dad for them. Silver lining number five is that I’ve stopped caring what others think about me. I don’t care whether you, reader, like this blog post, or whether somebody thinks I am oversharing. Or whether somebody thinks I am handling my diagnosis the right way. Do you hear that reader? I don’t care. This is me. I spent a good deal of my life suppressing me, because I thought that letting myself out could only result in a rejection of that me. Guess what? There’s no time left for that nonsense. Like me or don’t. Love me or don’t. This is the me that I’ve become. What life and pending death have made me. Silver number six: The silver lining to the awful, seizing trap that is a stage IV cancer diagnosis is a form of complete freedom. I am freer because I now have less to lose by taking risks than ever before. Silver lining number seven: I have discovered and seen so much love and so much goodness from others in the past few months. Before this, I honestly didn’t think that many people outside of my family unit — the one I created — cared about me. What’s more is that I convinced myself I didn’t care that they didn’t care. Because I didn’t need it. I had made some grand deal with society that I would always take care of myself. And I didn’t need to depend on others. That mindset came from my chaotic childhood, and I spent my adult life trying to find little ways to challenge that belief. I succeeded a bit, but I let myself off too easy so this growth was slow. Impending death sped that up quite a bit. I had a sudden, overwhelming fear of dying alone. Of going out as a single drop. One that would reach the end of my household and then dissipate into nothingness. I would then be only a story of what happened to Lonnie’s daughter to distant relatives. Or a story of what happened to that girl they worked with once. Or a story of what happened to a girl they they knew in school. And life would go on as normal with the turn of conversation. While that is still an inevitable likelihood for many to most of the people who knew me, my silver lining was discovering how many people actually did care more than that. My friends, my family. They offered me hugs and stayed patient with me through those roughest early weeks when nothing anyone said could ever fit what I needed to hear. I discovered that I was loved. And I admitted that I loved them back. Silver lining number eight is letting go of everyone else. There is still enough resistance in me to refuse to be anyone’s Christian duty or obligation of any kind. I have a knack for weeding out fake people. For weeding out people with selfish agendas. For weeding out people who just want to hear the story to tell someone else. Go rubberneck in someone else’s tragedy. I am not a story, I am a human being. Silver lining number nine is letting go of spending time on things that don’t matter. Of staying late at work to try to please someone who already doesn’t like me. Or going through emails from every place I’ve ever subscribed to or shopped at, which brings me to… Silver lining number 10 is doing things that do matter. This is allowing myself to “do” me. Starting a blog that shows people me — unfettered — while giving me an outlet for my emotions. Spending time with friends and family. And letting myself “do” me. I don’t ever tell my kids to change who they are. I just tell them to be their best selves, and to use their unique talents for good. But there has always been an asterisk or excuse for not fully applying that rule to myself. Me doing me is writing an honest, direct review of a doctor who is not up to par and publishing it because people need to know and deserve better. Me doing me is learning everything I can do to learn about ADHD, so that I can save my son from being marginalized and making sure that his needs get met. Me doing me will not be most peoples’ cup of tea. It will make them uncomfortable. They will see any form of directness as a bad thing. It makes lots of people not like me much. But the world needs someone who will do these things, so I’m OK with that. You do you, and I’ll keep doing me. These clouds are scary, dark and looming. Cancer is hard. Cancer is heartbreaking. Cancer is physically and mentally exhausting. Cancer took away my future. I am sick of cancer. But if silver linings are all I have? If silver linings keep me together, and keep me sane? I’ll take them. And make the fucking most I can out of each and every one of them.

Heather Stoker

Why It's Important to Look Beyond the Numbers With Colorectal Cancer

I’m love 40 down / As the match slips away from me, I need the crowd to pray for me To turn this one around / I’ve worked far too hard to be this far from victory I’m battered and I’m bruised / And I can’t afford to lose Frank Turner, “Love Forty Down” From the moment you hear the word “cancer” much of your life experience becomes a series of percentages and numbers. The first percentage that I came across was 6%. I had a 6% chance of making it to at least the five-year mark with stage IV colorectal cancer. Another published site had those same odds at 15%. Pretty small numbers. And then you have to remember that that’s only the five-year mark. There are no published statistics for 10 years, but I was told that my shot at making it long term is “very small” because of the incurable nature of my disease and my particular set of “data.” Then come the waiting rooms, the blood work, the stepping on scales, the blood pressure and temperature checks and of course the incessant repeating of my birthdate over and over (042578, 042578, 042578…). Statistics, numbers, data. All unique to me, but at the same time cruelly objectifying. I am a patient with a bar code. Yet I am breathing. My heart is still beating. And my brain? It’s just trying to make sense of it all. Doctors review your data before they step in the room. And the line they walk when they speak to you is a very thin one. I don’t want you to lie to me. Please be honest. But it would help if you could also not speak to me as if I were already a corpse as well. I am not a statistic. I am not a foregone conclusion. When you tell me that I should see someone to better come to terms with my own mortality, it tells me that you have already decided the ending of this story. Consider how this feels on the other side of this equation. Doctors are my only hope to get me as long as I can, and I already feel like you’ve given up on me. I need hope. I crave hope. And you’ve given me no grip to latch onto. I’ve written a lot about the emotional and mental havoc this puts on a person. Am I being too pushy? Too proactive? Asking too many questions? The doctors look annoyed. Am I just in denial? The momentum of the process, the white coats, the waiting, the numbers — they beat against you like waves. They are intended to lull you into submission. To put you in “patient” mode. Listen to the good doctor. Smile. Do what you are told. And coast along this journey with him until you land at your final inevitable shore of death. I’ve felt my heart pound out of my chest in waiting rooms. I’ve felt my legs turn into cement, the weight of moving too much to bear — in a doctor’s office after he left the room, and on a bench outside the facility. I’ve cried buckets of tears in the car in the parking lot of my driveway trying to get my shit together before going back into the house with my kids. I even had a panic attack in the middle of a Target after running into a former co-worker and his family. I am probably dying of cancer is not exactly something you bring up in chit chat in front of two small children. I smiled, said I was doing fine. Talked about how much I was enjoying my new job. I held it together until their cart was out of sight, feeling like my chest was caving in on me and the floor sinking beneath me. I strolled the aisles aimlessly, having completely forgotten what I was even looking for or how to find it. I wanted so badly for the mundane story I had just presented to actually be my reality. But it wasn’t. My stages of grief have been fluid and cyclical. Shock, denial, anger, fear, depression. I’ve cycled through them all. But there is one other that appears to be an essential part of my make-up. Stubbornness. I just don’t have it in me to passively give in. Is this merely my manifestation of the stages described as denial and/or bargaining? Perhaps. But in my view it is a feature that is desperately important for a patient with any serious illness to have. As I traveled this week to get surgical opinions, I brought a book along with me titled (and yes, I am a nerd), “Me, Myself and Us — The Science of Personality and the Art of Well-Being” by Brian Little. There is a chapter solely dedicated to personality and health. The most important factor when it comes to the relationship between the two, it seems is something called a sense of coherence (SOC). Essentially, this is defined as “the extent to which one has a pervasive, enduring feeling of confidence that one’s environment is predictable and that things will work out as well as can reasonably be expected.” The key is the part at the end about “as can reasonably be expected.”It all comes back to the serenity prayer, the wisdom of which, endures despite my lack of inclination towards religious endeavors. Grant me the serenity to accept the things I cannot change, change the things I can, and the wisdom to know the difference. As the book describes, “people high on SOC” are better able to “remain mentally and physically healthy after being exposed to challenges.” We need the three elements of SOC: comprehensibility, manageability, and meaningfulness. We need something to fight for. We need meaning. We need hope. I don’t get to tell my cancer whether it will respond to treatment, how aggressive it will be, or where it decides to recur/pop up next. But I do have a say in how I treat it. That means educating myself, asking questions, being annoying, getting second opinions and advocating for myself to ensure my best chances every step of the way. Over the last four and a half months, I’ve joined an online Facebook community (Colontown) dedicated to different treatment options for colorectal cancer.  I’ve also researched genomic mutations and traveled for second and third opinions. I fired my local oncologist. I got a better one. I’ve been very lucky. My disease so far has been very responsive to treatment. That part was out of my control. Now I get to have a say in the next step of my treatment. Which surgeon do I choose? Do I get a chemo infusion pump installed? If they open me up and see any peritoneal disease with their eyes, do I agree to HIPEC (a very intense surgical intervention that literally involves washing out my insides with heated chemo)? How should I weigh my very strong risk of recurrence, given my genomic profile, against the risks of toxicity and other factors from this treatment? I feel confident and educated enough to make these decisions. This week, I received a whole new set of numbers. I am now one of the lucky one in three that qualifies for a liver resection. That changes my five-year prognosis from this week’s statistic of 10% to somewhere between 25 to 60%. How do you like those numbers? I love that they are going up. But that wide range of “data” that I am now entering into says a great deal about how reliable we should consider any of those numbers to be. I am not a statistic. I am not a foregone conclusion. My future is unique to me, and all of those factors that play into it. Both outside of my control and within it. And for today, and as long as I can manage, my breath still flows and my heart still beats.

Heather Stoker

New Year's Resolutions For a Final Year of Life

“Every new day is a gift, it’s a song of redemption/ Any expression of love is the way to return/ To that place that I think of so often, but now never mention/ The one the voice in the back of my head says that I don’t deserve…” — “Jejune Stars” by Bright Eyes Looking back on journal entries and resolutions from years past, I can’t help but think of cycles and also growth. Every year the promises are similar. Every year I have fallen back into familiar patterns. And yet every year I still grew in some way, and learned in some way. Every year was one of transition. Some years more than others. Tremors and growing pains. While each year the plates shifted a little, 2018 brought a massive earthquake. The ground split wide open. I stood at the end of the year looking over the divide and realized, “Things will never, ever be the same again. There will always be a ‘before cancer‘ and an ‘after cancer.’” Nothing changes you like suddenly staring into the abyss of death, and living with the reality of a shortened life every day. I am cursed and yet at the same time have never felt so completely blessed. I have never felt so much fear and I have never felt so much love. My first CT scan since starting chemo has brought me a stay of execution. It is working!… for now. The tumors have gotten smaller. I still have to get past an MRI next month to determine whether there is additional cancer in my abdominal lining. And then there is the small matter of the extremely high recurrence rate for this type of colon cancer. The final prognosis hasn’t changed. But this news has brought some desperately needed rays of sunlight. I have time . And time gives me the luxury of reflection. Although there are no guarantees, I now feel confident I’ve got at least a year. And hopefully — aside from chemo and recovery from surgery(ies?) — it will be a mostly healthy year as well. After that, it gets murkier. So, for the first time I am heading into a new year and wondering whether it will be my last full year ever. I’ve written the resolutions of someone who is planning her last year ever… with the hope, of course, that it will not be. As I look them over, many of them are the same as previous years. Some of them are new. Some of them have dropped away completely. Here they are. Body: Eat more fruits and vegetables. Eat more nuts. Walk, do yoga or some other form of exercise every day. Get better about staying hydrated, especially on chemo weeks. Try to get on more of a consistent sleep schedule (chemo insomnia and post-chemo fatigue make this challenging.) Come up with a system to track symptoms. Advocate and be proactive with doctors and research medical options. Mind/Soul: Try to feel and then let go of my negative emotions. Especially when it comes to emotional reactions to the things and people I cannot control. This includes worry, anger, fear, guilt and impatience. Meditate every day. Journal every day Hug the people I love every day. Spend more time with friends. Have deep conversations and say how I really feel. Spend more time outdoors and get out into nature as much as possible. Travel. Go to concerts. Play (at anything), laugh and have fun. Learn something new. Stare at clouds. Family/Legacy (some crossover with above): Make special time with each of my kids. Make special time with my husband. Leave a record of who I am (blog, letters, etc.) Tell people I love them. Find ways to show others that I care. Mentor and assist others (at work, or elsewhere), Find ways to give back. Prepare for the ending. Decide end of life plans (hospice, etc.). Decide and communicate plans for my body and service after I am gone. Read books, talk to a professional and/or join a support group to help mentally prepare. I’ve done away with weight goals. I no longer care about losing “x” pounds. I just want to keep my body as healthy and warm as possible. This is the first year I’ve written no career goals. Yet I still plan to give my full self every day to my job, and to mentor and assist others as much as possible. However, I no longer have no plans for advancement and when I leave work every day, it will stay there. This has been true since my diagnosis. I am no longer leasing mental space to my career outside of working hours. Those hours have become far, far too precious for me to waste. Thinking about death is something I should have done long before this year. As humans we put up a strong mental block to it. However, it’s important to note no matter what you plan, they might still change when you find yourself staring directly at it. Some of mine have already. 2019 will bring many dips and peaks. I have hope for more peaks, but at the same time doing the deep work to help me through those inevitable dips when they come. Here’s to a year of the best of everything I have control over: Health, happiness, peace and above all — love.

Community Voices

The mental game is especially difficult when your diagnosis is the kind that means that you only have about a 10% chance of making it out alive. Most likely, you won't survive.  How do you find peace with that?  All of the platitudes about impermanence and survivorship fall flat.  As months turn into years, people get used to the fact that you have cancer, but YOU never get used to the idea that you are on borrowed time and that your treatments will eventually stop working.  People get tired of the topic.  You get tired of the topic.  But that fear, that sadness?  It's a backpack you get to wear for the entire journey.  You don't get to take it off and as hard as the journey is, you still don't want it to end because you know that the end of that road, for you, will not be a light at the end of the tunnel.
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