Hairpin Turns

I like the old way I thought
I was hanging in there
You held back the worst rain
From my shoulders then

What are we going through, you and me?
Every other house on the street is burning
What are we going through, wait and see
Days of brutalism and hairpin turns

Your nervous throat clicks
And my spirit swims right to the hook
You go quiet and leave me in the wake
Of a terrifying look

What are we going through, you and me?
What is it you want me be to be learning?
We’re always arguing about the same things
Days of brutalism and hairpin turns

Say it like I was right in the room there
And I’ll say it like your head was on my shoulder

And I’ll keep my eye open
And I’ll keep my eye open

The National, “Hairpin Turns”

“Overall, things are looking pretty stable. And that’s a good thing.”

Moments earlier, my phone had lit up with my doctor’s name and I braced for impact. My brain is already looking for patterns; for red or green lights to signal the news to come. He usually only calls when there is good news.

And, in fact, it was. Stable means no significant growth or shrinkage. Stable means no new metastasis. Stable means that I get to breathe again, to be the tiniest bit carefree. Until the next set of scans come in. My husband, listening to the other end of the phone call rises and I can hear the tension release from him as he sighs and embraces me.

For two days, the world is less heavy. The “what ifs?” start creeping in. What if I can stay stable on this line of chemo for a longer term? What if this roller coaster can convert itself to the scenic train ride that circles around the park for a while? We open our hearts to the “H” word, even though we should know better. We should know that with metastatic cancer there is always a hairpin turn just ahead that leads into a dark tunnel.

That hairpin turn came much sooner than we thought. For those who have read my posts titled, “How to Survive Stage IV Cancer” parts 1, 2 and 3, you will know that I always insist on getting a copy of the written report of your scans. Because there will almost always be parts of that report that your oncologist will not tell you about. Theae are things that don’t explicitly say CANCER (not yet, anyway), but which you will need to be aware of, keep your eyes on, ask about and monitor yourself.

Knowing this to be true, I drive out to the hospital on a Friday afternoon and play musical chairs in the hospital parking garage for 10-15 minutes so that I can pick up a copy of that written report and disk before the weekend. I fill out the form, sit back down, and then wait for my name to be called. I sit back down in one of the waiting room chairs to rip open the envelope. Black words on white paper arrange themselves into the standard report format and jargon:

RETROPERITONEUM/PERITONEUM/PELVIS: Interval resection of the large solid and cystic mass present within the pelvis on the comparison CT. However, there is an 8.9 x 3.3 x 5.6 cm lobular cystic mass at the left adnexa. IMPRESSION: A cystic neoplasm at this site is a possibility.

I stare at the words in disbelief. What.The.Fuck. What-the-ever-loving-fuck? I just had major surgery to remove a 16.9 cm mass in my right adnexa. Now you are telling me that there is a 8.9 cm mass in my left adnexa? Welcome to metastasis cancer, where there will always be something new to discover with each test and scan that ends up leaving you more questions than answers.

Is this part of the previous “giant glob” (as my surgeon described it) that was my previous mass and the surgeons didn’t get it all? Is my left ovary in that mass somewhere after all? The scans don’t specifically say that both ovaries are missing. Is this a new growth since since my last surgery?

I google cystic neoplasm: Cystic neoplasms include benign entities such as serous cystadenomas (SCAs), premalignant cysts such as intraductal papillary mucinous neoplasms (IPMNs), and cystic lesions with invasive carcinoma. So… basically this could be anything. Thanks a bunch, Dr. Google, for clearing that up.

Immediately I realize how silly we were to march out the “H” word so soon. Surgery is never clean with my cancer. Scans are never clear with my cancer. Why on earth did I expect this to be any different? Hairpin turns are built into the system. Metastatic cancer is considered to be incurable for a reason. It’s a giant game of whack-a-mole. Surgery, chemo, radiation, and trials are giant padded hammers. As soon as we furiously manage to bop one mole in the head, we turn to see that another has just popped up in another location.

My synopsis reads as follows: Woman goes in for combined HIPEC/Liver wedge resection. Tumor burden reduced significantly, but there is still cancer in both areas. And now there is a tumor rapidly growing on her right ovary causing damage. Woman goes in for surgery to remove THAT tumor, both ovaries and possibly her uterus. Unfortunately, her blood pressure keeps dropping and she requires additional units of blood, so they remove the “giant glob” and then close up and get out of there. The 16.9 cm tumor on the left is now replaced by a mystery “cystic mass” already 9 cm long in her “left adnexa.”

Of course, I know why my oncologist didn’t bring it up. Anything short of “suspicious for malignancy” doesn’t usually make the radar for things that he feels he needs to mention to me. And now I have a whole new set of “What ifs.” What if this mass in my “left adnexa” grows (or continues to grow)? What if I don’t find out again until I end up in the hospital with an infection or something worse because it is now encroaching on my left ureter or something else? AAARRRGGH!

I am a pro at this now. I can predict how the next week will go. I will ask the oncologist about it when I see him next Thursday. I have stuck with him because he has a good bedside manner and also the patience and willingness to listen to my concerns and questions. He will downplay this. He will explain why he thinks that it isn’t anything to worry about right now. He will then refer me back to the surgeon for further questions, before asking me to get up on the chair so that he can do his examination. And the surgeon? Well, I don’t see him again until early March.

So I am still riding the roller coaster. I am still navigating those hairpin turns. I am still arguing about the same things, and fighting the same fight on repeat. Maybe this is nothing at all. Maybe it will do nothing at all. But I know better. And I’m keeping my eyes wide open.

Pink Elephants

Me and the tap water circling the sink drain
Because it’s heavy
But I’m trying really hard to keep my nose clean
And the blue out of my arms
But it’s not easy

Julien Baker, “Good News”

You’ve probably heard this one before. Try not to think about pink elephants. Whatever you do, think of anything else but a pink elephant! And if you’ve heard it, you probably also know that it’s impossible, once this phrase has been spoken, to think of anything but.

This is what scan week is for me. A whole lot of trying not to think about something. And the more I try not to think about it, the bigger and bolder it becomes in my mind. I dial myself back from researching. I dial myself back from the message boards. I step myself back from the cancer, and try to pretend that everything is normal. Or whatever I try to pass for normal these days.

Normal, but with an colostomy bag. Normal, but with a home care nurse coming to visit. Normal, but with weird side effects. Is this one from chemo? From my last surgery? Is it related to my early menopause? Does it really even matter any more?

Everything got turned upside down about 17 months ago, and I have been walking on the ceiling ever since. The world is deceptively familiar until I focus on a single object and realize that it will never quite look the same to me again. I am happy* (with an asterisk). Like revisiting a trampoline as an adult, there are no free, soft falls anymore. I have changed and the gravity of my diagnosis places bruises where they weren’t felt before. But I’ve been gifted the moments. Family and friends wrap around me like a warm blanket. I take in the sounds and the smells and live, for just a second, in a future-less existence.

And when the blanket comes off, I find myself still here. Not dead yet. Not really sick yet. I am well past halfway to the median life expectancy for stage 4 colon cancer past diagnosis. Seventeen months in. Ten months to go to be able to say that I made the top 50%. Ten months. It seems impossible that I won’t be here then. And yet I logically know that it is not impossible. Probable? Perhaps. I think that I will still be here, but how much closer then will I be? What, if any planes will still be left on the runway?

Pink elephants. Pink elephants everywhere.

We aren’t really cut out very well to deal with the mindfuckery that is life with terminal cancer. To wonder, every day, when the limb we keep climbing out onto will finally snap. So we play games and invent superstitions.

I have somewhere between a few months to possibly even a few years left to live. But I don’t talk about years. I refuse to talk about years because if I do, they are almost guaranteed not to happen. And if I talk about a future event as if I will be here to see it? I can guarantee that I won’t. I pride myself on logical thought- like I am somehow hovering above it all. Then fear has me camping out here in the corner of superstition just like everyone else. The only difference is that I can see it happening and get to berate myself for my own foolishness every step of the way.

Every scan is big, but I could argue that the last couple of scans before this one were bigger. I had a gigantic tumor growing in my abdomen and threatening damage to my organs. My tumor markers were increasing alongside of it. There was plenty to be terrified of. This time? The abdominal met is gone. My tumor markers are… stable? If I could handle the last couple, then surely I can handle this one.

But.. like I said, every scan is big. There could be any number of hidden surprises. Tiny “nodules” in my lungs that have not so far been flagged as malignant might have grown while I was off chemo. My liver mets might have grown. And what if something in my peritoneum shows up on a CT scan for the first time?

And there’s more than just that at stake. Hope. Yup, you heard me, I used that word. Good scans this time around could be really, really good. They could signal that I am set for a period of stability on this line of chemo. And there have been a couple of tiny hopeful slivers going on in the background (and which I refuse to bring up in this blog) that also could happen, such as…

Stop it! You haven’t brought them up for a reason, dummy. You are jinxing yourself. Now something bad will happen for sure. The elephants can hear you, they’ve adopted a neon hue, and they are laughing their asses off.

Quick! Play a game on your phone. Do a load of laundry. Do NOT listen to that webinar on the ASCO GI conference. Or read that devastating post about an 11-year-old boy with colon cancer and peritoneal mets getting HIPEC surgery. And especially don’t read that latest post about another person from the cancer groups who has died. Avoid all things that you remind you of the cruel, vicious, and arbitrary nature of this fucking disease. Better to just avoid the topic of cancer and scans altogether and everything will just go away and be fine again.

All I have to do is stop thinking about pink elephants. Nothing could be simpler.

Chemo Eve

No thank you no thank you no thank you no thank you
I ain’t about to die like this
I couldn’t afford chemo like I couldn’t afford a limo
And besides this shit is making me tired
It’s making me tired
It’s making me die
You know I plan to retire some day,
And I’m-a gonna go out in style.

Regina Spektor, “Chemo Limo”

I don’t want to do this anymore. I have to keep doing this. I don’t want to feel this anymore. I have to keep feeling it. Lying in bed, I am a fuzzy tv screen of soft focus panic. I have to go to sleep so that I can get up and do the thing I need to do. The thing that keeps me alive.

The thing I need to do is get up and go to the place where the grey and sad people are. Where the birth date announced from the other chair is always so much older than mine. Where they take me back and wristband me up and stick a needle right in my port.

You can almost forget the port until your son bangs his head into it. Or until you have to wear a seat belt. Or until someone sticks a needle into it. Then it becomes a blazing emblem of soreness. A branding that the enclosed contents are the property of cancer.

Scarlet tubes on a silver tray mean that blood work is done and it is now time to squat over a toilet, cup angled for preciseness. You admire the clarity before placing your contribution in its box.

You are quantified with digits for weight, temperature and blood pressure. The doctor tells you to look at his big nose and say “aah” and then feels all of your lymph nodes and tells you to schedule your next appointment with the nurse. It has the makings of a sitcom but it doesn’t make you laugh.

In a spacious waiting room with 3 doors, you are told which one to watch while coughs echo over from the far corner. They call your name and take you back and assign you your place to sit and stare. You stare at the tv, out the windows, and at your husband sitting uncomfortably. And looking straight at you.

The thing that keeps me alive smells like chemicals draped over sickness. One’s weak attempt to engulf the other succeeds like Febreeze on a piss stain. The thing that keeps me alive sounds like the Price is Right with the volume down and machines beeping. The thing that keeps me alive feels like bubbles rising and stomach contents emptying. It feels like grease lying on your skin like a double cheeseburger in 90 degree weather. The thing that keeps me alive looks like peppy nurses pretending that you will get better, and sicker people quickly wheeled past you for infusion, reminding you that you won’t.

I will get up and do the thing I need to do, knowing that by this time tomorrow night, I will feel like I took a bath in toxins. My face might flush while I attempt to eat dinner but decide to go lay down instead. This time tomorrow night, I will be tethered to a pump through a needle in my port. It stays with me for two days. I might try to take a shower and the steam will creep under the clear bandage casing holding my needle, causing an itch left unscratched for the rest of the night. This time tomorrow night I will be runny and flattened. I will be tired and tingly and restless. The after effects from pre-treatment steroids will keep sleep away and thoughts awake.

Thoughts about how I don’t want to do it again. But I have to do it again. Because the thing I have to do keeps me alive. There is no break from the cancer, there are no breaks from the thoughts. Things will get better and then things will get worse. You do not stop dreaming of a way out, and then wake, each time to reality. You grow sicker on this ride with every loop and the loops spiral endlessly ahead.

On the night before chemo it isn’t always this bad, but on some nights it is. I know that a lot of people get side effects much worse than mine, so I try not to complain too much. Or I save my complaints for when they inevitably get worse down the line. On nights like these, when I muster up the resolve to go back and do this again, the hardest part is the reality that treatments like these will never stop until nothing works any more. The end of treatment, for me, is the end of everything.

On some nights I wonder how they can call me brave. Don’t they realize? How is it bravery when you don’t have a choice?

Quiet

I spend too much time
Raiding windmills
We go side by side
Laughing til it’s right

There’s something that you won’t show
Waiting where the light goes

Take the darkest hour
Break it open
Water to repair
What we have broken

There’s something that you won’t show
Waiting where the light goes
Maybe anywhere the wind blows
It’s all worth waiting for

Pull on the borders to lighten the load
Tell all the passengers we’re going home

I spend too much time
Seeking shelter
World without end
Couldn’t hold her

There’s something that you won’t show
Waiting where the light goes
Maybe anywhere the wind blows
It’s all worth waiting for
Anywhere the wind blows

Toad the Wet Sprocket, “Windmills”

The ceiling(s) in the rooms I spent as a teenager were your typical 90’s popcorn affair. Despite their lack of interesting or defining features, I spent an abnormally large amount of time staring at them. Sometimes I laid on the carpet. Sometimes I laid on my bed. And always there was music playing. My room was my safe space. It was safe from the yelling and arguments going on outside those doors. The lectures and the punched walls. It was safe from the school bus and the middle school where all of my friends took off on different paths leaving me very much alone. It was a safe spot from a new school and new state my Junior year. From interacting with my mother and grandparents. From having to reinvent myself yet another time.

Toad the Wet Sprocket’s “Dulcinea” was released in the late spring and early summer of 1994, and it was a mainstay (among many) on my playlist during the 1994-1995 school year. My Junior Year of High School, spent living with my grandparents after my Dad got laid off. The future was wide open, uncertain and empty. I was writing movie reviews for the high school paper and started dating 6 foot 3-inch tall senior named Eric, who played the trombone and spoke french. Everything was in disarray that year, and at the same time everything was okay. I was learning that change had always been and probably always would be a part of my life. I was learning that I could take care of myself.

I sought out and spent most of my time alone that year. And when I was alone, I was thinking. And I kept going back to the song, “Windmills”. Firstly, it was soothing. It rolls in like a gentle wave and gently ebbs back and forth. The lyrics brought up feelings for me of both an ending, and of a new beginning. Of facing dark times and surviving them, being forgiven for past mistakes. And of facing an uncertain future with courage and bravery. “Maybe anyway the wind blows.. it’s all worth waiting for…” And after listening to that song, that’s exactly how I felt. During this time, this quiet, I was beginning to craft my narrative of survivor-ship and growth.

It’s always during the quiet that I think the most. I don’t lock myself in my room any more, but a little bit of alone time; a little bit of quiet is still a necessary part of my existence. And yes, I still (of course) listen to music. But lately? There has been too much quiet. And too much thinking.

With regard to my cancer, I’ve been in my longest feedback drought since my diagnosis. I have had no new scans or test results since November. November. The surgeons said that they got out all of my abdominal tumor. There was uncertainty as to whether they got both ovaries, but after my follicle stimulating hormone test came back well over the menopausal range, they are assuming that they did. Good. And my CA 19-9 tumor marker rating just after surgery dropped from 124 to 86. Great! But honestly, kind of also… expected? 36 (the very top end of the normal range) is the lowest it’s ever been since we started tracking it and I got there just after my LAST surgery in April. The real test is where it trends from there. Creeping back up again? Creeping back down? I really wish that I knew. Except that my oncologist keeps forgetting to put in orders with my blood work for an updated tumor marker count! After my last set of blood work, when I noticed that they weren’t testing for it again, I actually called my oncologist’s nurse to ask whether they could use the extra vial of blood and add the test. “No problem!” And so it was added.

As each day passed throughout last week, I would anxiously go on MyChart with my hands over my eyes to see whether my tumor marker results were back in. Nothing. This morning I finally broke down and called my oncologist’s nurse and asked if she could check on it. A half hour later I get the call back. “Well, it seems that the lab didn’t process it for some reason. They couldn’t really explain. But don’t worry, I will make sure that your CA 19-9 count is included with your NEXT set of blood work when you come in next week.”

And so the waiting continues for another week or so. In the meantime, my oncologist will probably order a new scan soon- possibly for as soon as right after my next visit, so there will not have been much passed time between finally getting an updated tumor marker reading and getting the scans themselves. The entire purpose of monitoring tumor markers? To help determine how treatments are working between scans.

Now here comes the weird part. I was relieved. I know that I need to see that number, but I am terrified to see that number. I’m terrified because I have become conditioned to expect bad news. I half suspect that there is some deliberateness behind my infrequent tumor marker readings. Maybe my oncologist has guessed that I am high strung and sees no point in getting me worked up about where the numbers are moving? If so, maybe he is right.

But in the absence of both bad and good news, all that is left is quiet. And thinking. Some days I am optimistic and can pretend that everything is working great. The chemo that was shrinking my liver metastasis before going off chemo for surgery is back to work again! Some days are saturated with anxiety and fear. The last time I took a chemo break for surgery, it stopped working when I started back up again. What if that’s what’s happening now? If so, what will I do? As I’ve stated before, my current line, FOLFIRI is the last first OR second line chemo currently approved and available for my mutational profile.

So I am stuck in my room staring at the ceiling, thinking about all of the “what ifs”. I line up all of the planes on the runway that I could possibly still take when this flight ends. What comes next is either 3rd line treatment (expected to only slow growth not shrink it) in hopes of prolonging the inevitable a little longer. Or a clinical trial.

I have two potential “trial” options that I am looking into. One isn’t really a trial, but it is mimicking a trial that is currently ongoing. It basically involves adding an immunotherapy drug (Opdivo) to the 3rd line treatment (Stivarga) that I would be moving on to anyway. However, since it currently isn’t approved for this purpose, it would require appealing to the drug company to letting me use it for free under “compassionate use.” The other option involves putting together a mountain load of documentation and sending it out so that I can get tested for my HLA-1101 or something or other status in order to qualify for a vaccine trial targeted to my specific KRAS G12V mutation. So, a lot of work gathering stats, test results and other data, and- assuming I even qualify- potentially spending weeks away at the NIH in MD for something which might work?

I was initially favoring option 1. However, the online Colontown Facebook trial group is tracking US members currently taking this combo either through a trial or off label. The results so far (after a couple of months)? Out of ten members, six had progression and four have remained stable. Of course this is a small sample size, but so far it does not appear to be generating as much success as the Phase I trial in Japan that captured headlines at this year’s ASCO (American Society of Clinical Oncology) conference. Now I am wondering whether taking a shot (pun intended) in the dark with the vaccine trial might be my better flight path.

I line up my planes because I know that when the planes are gone that my journey is finally ending. But here in the silence, it is not ending yet. I am facing another uncertain future. Am I facing it with courage and bravery? The uncertainty fills all of the gaps with both hope and fear. Sometimes I get so ambiguously fearful that I can barely catch my breath. But there are other times, like this morning, that I wake up in the arms of my husband before getting up to move from room to room. I crawl into their beds and cuddle with each of them as I wake them up for school. Each member of my family still enjoys this, including my fourteen-year-old. How many fourteen-year-old girls still want to cuddle with Mom in the morning? In their arms, I am filled with warmth and love to the point that it is overflowing. I think about how lucky I am to be able to both give and receive this much love. And I am at peace.

There’s something that you won’t show
Waiting where the light goes
Maybe anywhere the wind blows
It’s all worth waiting for
Anywhere the wind blows

In my teenage years, when I heard those lyrics it soothed me. I’d survived so much already. No matter what lied ahead, it was all worth waiting for because I knew that I could handle it.

Now, I know that what waits on the other side is dying. The wind is bound to blow me im that direction. Is death worth waiting for? I cannot say so. At least not yet. I am selfish and would rather “wait for” the chance to see my children grow up. I would rather grow into a shriveled up old woman with my husband by my side. However, as I inch closer to that point, I am going through the process of learning how to die. If I can feel the love I felt this morning around me, maybe I can find that peace again. And maybe, in the midst of a quiet before my final uncertainty, I can face it with the same courage and bravery.

Deal with It

I feel better and better and worse and then better
Than ever, than ever, than ever
I feel much better, and better, and worse and then better
Than ever, than ever, than ever, than ever Frightened Rabbit, “I feel better”

For those that aren’t aware, I have been sending several entries that I’ve written to the blog site “The Mighty” (a community centered on people suffering from disabilities and illnesses). Six to Seven of them have chosen for publication.

When I sent my first submission, I think was just to find out whether my writing was “good enough.” After that one was approved, it began to evolve into a way to get a little bit more exposure for this blog. What had begun as a form of public therapy was starting to become more than that. I hoped that within the Mighty’s target audience there might be more people who could relate to my feelings and message.

What I didn’t know initially (but of course do now) was that all or most of my Mighty publications were automatically re-sent to Yahoo News online to be republished in their lifestyle page (I clicked a box that allowed that this could be done, but mistakenly assumed I would at least be told if this happened). I only found out about it after the fact by randomly googling myself.

My first thought was “Cool! Wider exposure!” But then I began reading the comments section. It’s amazing what people will say when they don’t know you personally and there are no real life consequences for their actions.

For example, a commenter on one of my older articles suggested that I had no right to be upset because he’s read about a 4-year-old killed in the news, and that was a much bigger tragedy. I, on the other hand, had already lived a good life and therefore just needed to “get over it”

The comments on my most recent submission echoed much of the same. “We all die someday” was the general theme, so I need to just deal with it. Another expressed indifference to her own death. Finally, there was the mandatory Bible thumper: “If you accept Jesus into your life, there will be no reason to be afraid of death, because eternal life will be waiting for you in heaven.”

I do wonder sometimes at these hyper-religious people’s certainty that heaven awaits them. So many people who claim to be Christian are just really bad people. Do I really believe that they will fly up and get eternal life just because they go to church on Sunday? No, sorry, I don’t. And what about that whole, “It is harder for a rich man to get into heaven than a camel to get through the eye of a needle” thing? Don’t you lose just the tiniest bit of sleep over that? You aren’t starving or begging for food. You have a home and a car, how can you feel so sure that you don’t meet Gods definition of rich?

And if there is a God who endowed me with an analytical brain, would he really punish me for using it? Exploring the arbitrary nature of all of this is one of the reasons why I love to watch TV’s “The Good Place” so damn much. But I am digressing, I know.

So what about those comments from the “we all die someday, so deal with it” crowd? If they are so ambivalent about the prospect of death, do they feel that way about everything that is lesser than that? Do they smile and “deal with it” when people steal money from them? When they get fired from a job? When they have a falling out with their children? What if they get in an accident and become crippled? Why is it okay to be upset by those things, but not by death itself? 1) Death makes us uncomfortable, and 2) we have been too influenced by movies and hero stories that perpetuate stereotypes that people with terminal illnesses must always be brave and positive.

A quick click on their user profiles tells me everything that I need to know. These are people who literally scour Yahoo news all day putting people down and criticizing articles. Which means that they are probably either retired or they are living in their mother’s basement. These are people who are living unhappy and unfulfilling lives. Can it be any surprise that they believe themselves to be indifferent to the thought of death?

I am tempted to wish myself a magic wand that would allow me to test their supposed indifference to dying. Do you suppose the likely 65-70- year old telling me that I’ve lived a good life already at 40 (and therefore have no right to be upset) would be willing to give back the last 30 years of his life and trade places? If I actually had the power to make such a trade would he still be be so ambivalent? Surely he would not protest since he clearly doesn’t believe there is any life worth mourning over after middle age anyway.

I know, I know, I should feel sorry for these people. What a sad, bitter life they must have if they think that losing it is no big deal. What a sad, bitter life it must be to sit around on the internet criticizing people and contributing nothing back to society. Their dopamine rushes come from hitting the “send” button on a nasty comment instead of from spending time with loved ones, achieving something of value or giving back in some way. They waste their lives in such a way that they really don’t have value.

Meanwhile, here I am, trying like hell to stay alive to watch my kids grow up. Life is SO wasted on the living.

Of course I can just dismiss the faceless commentators. Except. There is a part of my brain that wonders how many others there are who are thinking the same things but who don’t or won’t say a thing to me. At least most won’t, anyway.

I am almost certain that my blog postings and updates on Facebook have become too much for some people. I am 16 months into my diagnosis and here I am, still kicking! Shouldn’t I have died or at least be on the brink of it right now? And if I still write and provide updates this far in do people think I have overstayed my welcome of sympathy? Perhaps they think that I am posting and writing because I need the attention? I would gladly trade the attention back for a few decades of life without surgeries and chemo.

I am also sure that there many think that by this point I should be more adjusted to my diagnosis and settled into playing the part of “the happy/positive girl with cancer who no longer complains or fears death”. I strongly suspect that there are those that probably think that since I am still here and still healthy that I must be overplaying the extent of my disease and will be just fine.

But mostly- at least to my face- everyone’s been supportive. The one exception, of course being variations of the infamous “we all die someday” comment that I have learned to despise so much.

One of these comments came from someone who has been having some health problems (significant, yes, life-threatening? No).

Maybe we are ALL just dying slowly. A comment like this displays such a fundamental lack of understanding of what it’s like to KNOW unequivocally that your death is near. To know what it feels like to not be able to see or plan for life past 12 months in the future. Knowing you are going to die is SO different than sitting around musing about it.

Maybe people who make these comments will realize this when I am sicker and in pain and closer to the ending. Maybe they will realize that as they attend my memorial service- still very much living and breathing and making plans for their future. Maybe it will occur to them then that dying young is not something that anybody should be jealous of. Maybe it won’t.

Regardless, all of this newly found negativity brought to me from the land of anonymous internet has gotten a small part of my brain churning. SHOULD I be getting over it by now? SHOULD I start talking about it less?

I think it would be easier if I could get to a point where I feel stable.. where I am not on such shaky ground that I don’t fear that my very next scans will send me into a final tailspin.

But I may never get there. I am locked into that tenuous spot between having either only a few months left or perhaps a couple of years left for the indeterminate future.

Getting over it is never going to happen. You are never going to be able to stop me from thinking about death. Never. It would equivalent to you completely shutting off the part of your brain that thinks about anything in the future. As it stands right now, my short term future includes death, so any thoughts about the future means thinking of dying. I do hope that someday I can claim that I no longer fear it, but I haven’t gotten there yet either.

If getting over it isn’t possible, could I just learn to “deal with it” as the comment suggested? For clarity’s sake, I am dealing with it to a large extent already. Although my blog therapy might make it appear so, I do not actually spend all of my days sitting around crying and bemoaning my fate. I get up in the morning. I spend time with my family. I laugh a lot. I cry a little. When I am around company, I don’t actually talk a whole lot about what is happening to me because I know that it makes people uncomfortable. I save it all for this blog. That way people who want to know can seek it out and read it, and the people who don’t want to read it don’t have to.

That said, I could possibly do more in other areas. Since recovering from my surgery and having that huge pelvic met removed, I am physically feeling better than I have in a long time. My moods still cycle on a daily basis, but lately the highs have been higher and the lows not as low. However, I am still struggling to get myself “unstuck” from this holding pattern.

I am hesitant to invest myself in any big change for fear that it will just get thrown out the window with my next set of scans anyway. I know that I need to unstick myself, but I am not sure how quite yet. Maybe it’s with something as simple as trying to work diet and exercise back into my life again. I don’t expect miracle cures, but it could give me back at least the illusion of some control. Or maybe it’s something deeper than that. Something that has been rattling around my brain, but which I am still fearful to commit to in writing.

It has also occurred to me that maybe I should cut back on writing and talking about it so much. But it’s not as simple as that.

I keep thinking about how before my diagnosis I knew so little about cancer. I thought that metastatic cancer always killed people quickly. I thought that everyone going through chemo lost their hair. I had no idea how the extent of a tumor’s genomic profile influenced the drugs they can take and their final outcome. I think that part of the reason that I knew so little was because nobody ever talks plainly about all of this stuff. Nobody wants to know the scary details of a disease that can happen to anyone and which ends in death.

I have decided to continue to talk about it because others don’t. Unless you have been close to someone with the disease it often gets shrouded in secrecy. Someone gets diagnosed, goes bald, they smile, stay positive and fight bravely before fading away for a bit. Finally, you hear that they have “lost their battle” and fallen asleep forever surrounded by family.

Cancer sucks. It is indiscriminate and unforgiving and it is NOT all “part of God’s plan”. It’s time that we talk about that. And it’s time that we talk about death.

I am aware that it will make people uncomfortable. And those people I’ve made uncomfortable will think or post negative things about me. That’s just how it goes.

But I also hear from people who thank me. They thank me for helping them to put words to the feelings that they are going through. They thank me for putting them in a public forum for others to read and understand. Sometimes I even hear back from from people who aren’t sick, thanking me for helping them understand. And for helping them to better appreciate and live the lives that they have been given.

It’s those comments and notes that remind me that it is worthwhile to continue writing. To continue talking about it. And as for those that don’t like it? Well, I suppose that they will just have to deal with it.

2020

So this is the New Year

And I have no resolutions

For self-assigned penance

For problems with easy solutions

Death Cab for Cutie, “The New Year”

So I made it into another calendar year. Another countdown, another ball drop, another kiss with my husband at midnight. This year, I spent NYE day in the chemo chair ushering in systemic chemo #20. For he remainder of the evening, I laid on the couch or bed with my take-home chemo pump in a familiar swamp of general yuckiness and mild nausea. There was no partying. There was no clinking of champagne glasses. And yet I was still happy to just be here, with my family to ring in another year.

But first, let’s do a quick review of 2019:

This year by the numbers: Two major surgeries, one hospital stay for an infection caused by a rapidly growing tumor, several minor surgical procedures, many scans and 12 systemic chemotherapy sessions. I said goodbye my gall bladder, my colon, and both ovaries (they think, lol). I had my liver hacked at, the inner lining of my abdomen removed and chiselled away, and got a good chemo washout of my abdomen. I reluctantly said hello to early menopause at 41. Amazingly, I got to keep my hair.

Strapped in with no escape, I also continued to ride the emotional roller coaster that is stage 4 cancer. I went into a surgery that could have put me on a path to being one of the few who survive this thing only to have it cancelled after laparoscopy. I was sent home without surgery and hope, only to have a second lesser surgery that would buy me more time offered the next day (to occur a month later). I then discovered after that surgery, that they had missed that the mass on my ovary was a tumor which was now growing at a rapid pace. From that, I got a hospital stay, nephrostomy tubes (and later, stents), and a second surgery to remove what was now a 16.7 cm tumor in my abdomen.

So yeah, quite a year. But I am still here, and, especially since that tumor was removed, feeling pretty healthy.

The good news is that thanks to most of that I am actually beginning 2020 with less cancer in my body than I started 2019 with. At least I think so. I haven’t had any scans since I went off of chemo for this last surgery. Let’s hope that all of those little fuckers (mets) decided to stay in retreat mode and not grow or travel during the interim.

The bad news is that I still have some cancer in both my liver and peritoneum, and that I have already technically failed one line of chemo. Additionally, given my fairly dismal mutational profile, I have less chemo options going forward than a majority others might be in my same position.

Now it’s time for a confession. I expected to still be here today. I wasn’t as sure that I would still be as healthy, but I had added up options still available in my head and calculated that I would at least most likely make it to this point.

Where I go from here is less certain. I am holding my breath that since my current line of chemo was at least working on my liver mets prior to the break for surgery that it will continue to work. But the truth is my whole world could change as soon as my very next scan. The last time I came back from surgery, I failed chemo. Will that happen again? The thought literally keeps me up at night.

And so on to 2020…

Last year, in my post “365 days”, I posted a fairly large number of resolutions for what I thought might be the last full year of my life. In the end, I found that despite all of those resolutions, the most amazing thing that I did this year was to simply SURVIVE.

With that in mind, I’ve paired down last year’s longer list of specific goals into just a few broader ones that I’ve found to be most important:

1) Know what’s important to you. This is a pre-requisite to everything else. Sit down and map it out. What are your values? Who and/or what do you care about the most?

2) Be present with the people who matter.

Moments with my family and friends are pretty much everything to me now. I have gone full days this year where I haven’t even been able to accomplish getting dressed. But I sat with one or more of my kids and snuggled while they watched a TV show, or showed me the videos they made on their limited social media accounts, etc. They will remember the snuggles. They will remember you listening. They will remember those moments.

3) Pick your battles, and then fight like hell for the ones you pick.

I’ve reached this point where I realize that virtually none of my doctors are perfect, but if they are at least trying to find the right answers and respect my questions and research I am sticking with them. Because even just finding that is a rarity. A good doctor doesn’t get offended by a second opinion and is secure enough to consider other alternatives, if they are based upon expertise or research.

I firmly believe that some of the battles I did choose to fight this year (leading to both of my surgeries), either saved or extended my life by quite a bit. Note- this philosophy applies to all areas of life, not just medical. I am just using this as an example.

4) Be both critical and forgiving of yourself, and be open to improvement.

Know that you aren’t perfect. Be open to correction and be aware of your flaws. But don’t let that awareness consume you. Understand that they are also part of you, and in many cases baked in by past experience. The key questions that you need to ask yourself: 1) Who are these flaws hurting, if anyone? If they are hurting yourself or others, then ask, 2) Am I trying to make things better? If the answer to #2 is yes, give yourself a hug. Because in the end, it doesn’t matter what anybody else thinks about you, only how you feel about yourself. I know that I’ve pretty much stopped caring about other peoples’ opinions of me. But if you do something that makes you feel bad or yucky about your own actions? There’s probably a reason (Final note: this doesn’t factor in toxic personalities. Have you ever noticed that some people are never to blame?)

5) Don’t wait.

Don’t wait to live. Don’t wait to have fun. Go on the vacation. Go to the show. Bring your loved ones with you. Don’t wait to challenge yourself, or to do that thing you are afraid to do. Don’t wait to show your talents, or to do something that you are passionate about. Take the risk. Put your ego on the line. The people who would mock you if you failed don’t matter. Don’t wait to fix a problem that is making you or someone you care about miserable- no matter how tough it is. Battling the problem may take great courage and strength, but ask yourself- will it really be worse than not doing anything at all and letting that problem grow and fester, stealing you and/or someone you care about of happiness? Life is short. For some of us, it ends up being shorter than for others. Don’t wait.

6) Take care of yourself.

I’ve done away with long lists of “shoulds” and “shouldnts.” I’ve decided that I don’t want to spend my last months or years going to the extreme with diet and exercise. Go ahead- spend the day on the couch, have the cake, have the drink. Life is too short.

Just don’t let things get to extremes on the other end either. If you find that you never exercise, go for a walk. If you never eat vegetables, add in the ones that you can. If you smoke cigarettes, quit. Take care to not do things to your body that you know can seriously damage the health that you’ve been given in the long run.

7) Live your life with the ending in mind.

Whether it’s 50 years or 5 days from now, some day, you will die. The problem is that none of us think about death at all. What will our final plans be? What will it feel like? How will people remember me? What will my legacy be? This past year, I had to decide what I wanted my final services to look like. I had to decide what should be done with my remains. I had to make decisions on palliative care and end of life matters and communicate them to my husband.

All of these decisions weren’t for some abstract event to happen set to many years in the future, they were immediate and concrete. I’ve also had to think about what I will leave behind when I go. How does my story end? For most, I may be just a Facebook page or blog that no longer gets updated and eventually, expires. But how will others remember me, the ones that I am closer to? How will my kids remember me? Thinking about those questions is important, because the answers will decide how you choose to live your life.

So here I go into 2020. I hope to be back, reflecting, and perhaps writing something similar next year. But if for some reason I am not, or find myself too sick to be able to, I hope that they will stick. In the meantime, I am still strapped into the roller coaster, bound to face whatever the coming year has in store for me.

The Last Time

In the stillness of the moment it takes for a Polaroid picture
To capture our faces forever
The world has turned a touch on it’s axis
And the only thing certain
Is everything changes

So honey I just need a little time
To take a little time with it today
To savor all the triumph and tragedy
Before it slips away
Before it slips away

Let go of the little distractions
Hold close to the ones that you love
Cause we won’t all be here this time next year
So while you can, take a picture of us

Frank Turner, “Polaroid Picture”

I got my first MRI on a Friday.  This was the one that was supposed to confirm or deny whether my cancer had metastasised to my liver.  I knew what it meant if it had.  It would mean a death sentence.  And I just had a feeling, after reading the body language of my oncologist, that it had.  The most torturous part of all was that I wouldn’t find out until early that next week.  That left me with a whole weekend to contemplate, to worry, and to hold on to threads of hope.

But… I was seeing Frank Turner, who I knew had an awesome live show.  I would scream, jump, and for a few minutes- forget.  And yet I knew that there would be a couple of songs in his set that would be difficult to get through.  One of them, for example, “Long Live the Queen” was about celebrating the life of a friend of his who had died young of illness.  I was nowhere near being in the mood to celebrate death, but I sang along half-heartedly anyway.  And then there was “Polaroid Picture,” a song about living life in the moment- because you never quite know when that moment will be the last time you get to experience something.  He closed with it.

Cause we won’t all be here this time next year, so while you can, take a picture of us. 

I was singing and swaying along with a good friend of mine and for the first time I thought, what if I’m not here this time next year?  I knew that even if the scan came back with bad results (which of course, it did) that I most likely would be, but that thought, that feeling chilled me.  When the “on this day” reminder of that concert came up on my Facebook memories, I took a silent moment of gratitude.

Most people don’t get to know when it’s the very last time that they will do anything.  There was something on the internet that got shared around awhile back that alluded to this.  It said something like, “When you were a kid, there was one day that you went out to play with your friends for the very last time, and you had no idea.”  The message was the same.  Things are always changing.  You have no idea what might happen tomorrow.  You grow up.  You get hit with a major financial crisis.  A friend or family member dies.  You die.

In October, my husband and I went to Hawaii to celebrate each other and our nearly 20 years of marriage (24 together).  I was sad to leave, but I knew that we had another vacation coming up- to Florida, with our kids over Christmas.  I knew that I would once again get on a plane to some place warm and tropical to make memories with my family.

On the last evening of our trip as a family, I felt another sensation begin to creep in- deep sadness.  I knew that we would not be able to take another vacation to some place warm for at least another year.  A year, proportional to my expected remaining lifespan is equivalent to decades for someone else my age.  I walked out in the dark to the beach and wondered yet again, Is this the last time I ever get to stick my toes in the ocean? To get that feeling of my feet sinking into the sand as the surf recedes?  Of course, it might not be.  But the chances that they were the last are pretty decently high.  Before my diagnosis, I always just assumed that there would be another time.  I don’t assume anything any more.

Years ago, our family took a trip to Pawley’s Island in South Carolina and spent a week watching my kids have a blast at the beach.  Before we left, we made a point of “saying goodbye” to that ocean.  My husband took a picture- it’s the same one used on this blog.

On the morning of our flight back to Ohio from Florida, we made a point to walk out to the sand to say “goodbye” to the ocean one last time.  I tried to let go of my worries, held my children close, and raised my arm to wave goodbye while my husband pressed click on his camera phone to capture the moment.

Let go of the little distractions
Hold close to the ones that you love
Cause we won’t all be here this time next year
So while you can, take a picture of usIMG_20191228_073605