In Suspense (ion)

If only you’d have known me before the accident

For with that grand collision came a grave consequence

Receptors overloaded, they burst and disconnect

‘Til there was little feeling.

Please work with what is left

Death Cab For Cutie, “Ghosts of Beverly Drive”

The last week has been a pretty surreal. I’ve found myself floundering around. There is no post to guide me, and there is no floor to ground me. I am suspended. Last week’s bad news came like a car crash, and a week later I still find myself frozen mid-flight, waiting to discover where the momentum will finally fling me.

Wherever that place is, I am doing my best job of avoiding it for now. Because I know just how much the impact is going to hurt. I am afraid to be grounded, because I know that means taking a hard look at how much closer I am getting to the end of the story. About how quickly I burned through FOLFIRI. About how much longer trials and third line treatments are likely to take me from here. Some people can live years off of FOLFIRI. Me? I got four months (okay, closer to six if you count the time before my surgery). I am through the windshield, the glass is shattered, and debris is flying everywhere. The fate of this disease reminds me, time and time again, that I am not the one in control. My ideas, plans, and goals amount to nothing in this mess.

While suspended, I float from task, to distraction, and back to task again. Any way to avoid overthinking and over feeling. Because the thinking and feeling can only lead to that fear, raw fear, of being closer to death right now than I had imagined and hoped that I would be at this point. In my head, I review all of the milestones I wanted to achieve this year. I still see the last day of school. I still see our annual summer trip with the kids to Cedar Point. I still see a cruise to Alaska in August, six months from now. Then I have to see my Audrey’s first day of High School. Finally, we have to make it back to the ocean as a family as 2021 rolls in…

But I knew not making it there was a possibility. And right now, it looks a lot less possible than I dreamed it would be at the start of this year. How long can I possibly hold my disease back from taking away my ability to travel, or to remove my vigor for life? How long can I hold my disease back before my home becomes a hospice where the people around me have to watch me die?

But this is not the time to panic. Right now, I need to stay logical and strategic. So for right now, I will continue to float about, so that I can examine this scene from all angles.

I read my written report from my scans that I ordered to be received in the mail and circle the appropriate sections to discuss with my oncologist (who has been out this past week). There is a smidgen of good news hidden beside the bad. The 9 cm cyst in my left adnexa that I was worried about on my CT is not FDG active on the PET scan and therefore NOT acting like cancer. This is actually very good because I don’t have to worry about that growing out of control and disrupting everything. This removes what I feared to be my most immediate threat. The bad news? The PET/MRI directly contradicts the CT scan in that my largest liver met grew. My mets also became more “FDG avid” than in my November PET. And it looks like I now have an enlarged lymph node near my liver that appears to be malignant…

So things appear to be definitely progressing, or “waking up.” This point was solidified by my CA 19-9 marker rating coming in at 92 this week, after it was only 82 four weeks ago, and 86 ten weeks ago. My cancer caught on to this line of chemo and it is no longer being effective, and I am currently without a safety net, or new plan of attack for where to go from here.

Avoid the feelings for now, and let the inevitable impact come further down the line. The debris will sort itself out eventually. There will be a plan, and I will try it, and I will strive for success. And the cancer is going to do what it will.

If my cancer is clever, then the only way to fight clever is to continue to keep changing things up. I have to use as many different tools as I have available to me, in quick succession if need be, in order to keep it on its toes and confused. Those tools are first line SOC chemo, Clinical Trials, Surgery, Liver Radiation (Y90, if my liver mets gets worse- not there yet), and third line SOC chemo. I fully believe that if I had not had the three major surgeries that I’ve been through so far, I would be in a far worse place right now. They have bought me time. But surgery is off of the table for now, so my next trick has to be something new altogether. Something that my cancer is not going to see coming.

For additional time with my family, I am willing to take risks. I am willing to undergo pain and sickness. But first I have to get accepted into a clinical trial. I am fresh from SOC chemo. I am healthy (aside from the whole cancer thing). I am young. I have no other ailments or debilitation. I am primed and ready to throw out whatever abuse you can throw at me. I just need to find a trial that will trick my cancer again and give me some additional time.

I know how quickly I can get hyper-focused and overwhelmed, so I alternate trial research with breaks for shiny objects. I communicate with the Principal Investigator to find out what the trial entails and hope that I can get in. And I do still have hope. Because hope serves a vital function. It’s the thing that keeps me going to the next best place that will keep me here for my family. Another thing that I know about myself is that when the time comes, my resolve will be there. I’ve learned that despite my ability to throw an amazing pity party, I just don’t have it in me to quit. It was ingrained upon me a long time ago that I would keep getting up, no matter how much life knocked me down. This is just Heather, suspended, going through the phases of a surprise terminal cancer. The one that nobody expects to hit them just when they’ve hit mid-life.

I’ve asked all of the questions that I can. But there is no answer to “why” this happened to me, other than it was going to happen to somebody. There is no “why” to how my disease is progressing, other than that is my luck of the genomic mutational draw. There is no good answer to “why” I have to leave my family behind and die in my early 40’s other than that it was going to happen to somebody. And that someone is me. So I will hit the ground, because I have to. I will feel the pain, because I have to. I will keep trying, because I have to. And soon, I will write letters and find my way to some kind of peace. Because I have to.

And who knows, maybe, just maybe- there might be room for a small break or a miracle. Luck is a finicky thing. I do not get to choose whether it shines its light on me today or tomorrow. But I have to admit, I am feeling kind of due, should the clouds see fit to break.

White Walls, Dark Dreams

White noise
I don’t know if there’s breathing or not
Butterflied arms, tell me that this one has flown
Blood seems black against the skin on your porcelain back
A still life is the last I will see of you, my painting of
a panic attack

You died in my sleep last night…
You died in your sleep last night…

Frightened Rabbit, “Death Dream”

The examination rooms at the Cleveland Clinic are stark white. Clinical and Impersonal. If your doctor’s office is high enough in the tower your view can extend all the way to Lake Erie. I’ve sat in these rooms on multiple occasions now. Staring at the blank walls, the blank sink, and the blank examination table. I pass the time by playing games on my tablet with my husband. Between turns, I open up my “notes” app to make sure that all of my questions are written down so that I don’t forget to ask them later. My leg jitters up and down, tapping the floor. I bite my nails. Every now and then I get up and walk over to the window and stare out. Or maybe I squirt some sanitizer gel on my hands and nervously rub them together.

In this room or one like it, I’ve made plans for surgery. In this room or one like it, I’ve gotten bad news. Today, I am here to find out the results of scans with hopes that I might qualify for surgery. My husband says that he hates the Clinic. He hates the whole city of Cleveland. It was here that I had my surgery-not-surgery, – nearly one year ago today.

The path over the sky-way from our hotel is littered with bad memories. We pass the surgical waiting room “This was the place where Dr. Surgeon told me that he couldn’t operate because your peritoneal cancer was too extensive. This is the place where he told me THAT NOTHING COULD BE DONE.” We turn the corner. “That’s the place where I called my Dad crying, wondering how I was going to break the news to you.” Of course, all of that was a false alarm. I was back at this hospital having surgery a month later. But we left that day thinking that it was time to make final arrangements. We left that day and had to tell our kids that Mommy was going to die. Those memories burn and form permanent grooves in your brain that play like a record again and again in your mind.

I didn’t feel nervous until I entered this room. And then everything fell on me at like an overhead compartment after the contents had shifted mid-flight. The longer I waited, the more I began to feel certain that the news today wasn’t going to be good.

The wait today is longer than usual. The radiologist has not finished his report on yesterday’s scans. I hear staff out in the hallway, “Where is Dr. Surgeon? Does he know Stoker is here?” I hope that he is missing because he is tracking down my scans. I try to be patient, knowing that a very long wait is far from the worst thing that can happen today. Two hours past our scheduled appointment time he finally enters the room.

I keep having dreams
Of pioneers and pirate ships and Bob Dylan

Of people wrapped up tight in the things that will kill them
Of being trapped in a lift plunging straight to the bottom
Of open seas and ways of life we’ve forgotten
I keep having dreams

Frank Turner, “I am disappeared”

I had slept for nearly 10 hours the evening before. Something that I never do. Even stranger was the fact that my sleep was solid, without even waking to use the restroom. My dreams had been large as life, vivid. There were castles and evil villains and royalty and battles for power. When my husband finally woke me, I didn’t want to get out of bed so I rolled over to snuggle with him instead. I breathe in his scent. If comfort could be bottled, this is what it would smell like.

He was already nervous, but I was in a good mood. I lingered in the shower, enjoying the lemon verbena scent of the hotel brand shampoo. I applied my free sample moisturiser from Sephora that told me that I was getting moisture “straight from the clouds.” At breakfast, everything tasted better than usual. The latte, so creamy. The fruit, so sweet and rich. The bacon, so thick and crispy. I savored every bite whilst looking across at the worried line in the center of my husband’s forehead.

I used to think intuition was a myth. I am a firm believer in it now. My brain knew before I did that today everything was going to fall apart. “Take a deep breath” it said, “savor these last moments. Enjoy this sense of peace.”

The radiologist has not yet reviewed the scans and submitted the report, but I had a chance to look at them, and it appears that there is some progression in the liver. I blink, trying to process what he had just said. The CT locally had noted a few smaller tumors that maybe weren’t definitively seen on the prior report. My oncologist locally had told me not to worry about them: “they probably just weren’t picked up on the prior scan due to positioning, but I wouldn’t worry about them. Your largest tumors are unchanged in size, so everything looks stable, everything looks good.”

“So, my understanding was that all of my tumors except for one were in the right lobe. Wouldn’t it be possible to re-sect the right lobe and then simply ablate what is left in the left?” Uh no, here look at your scans- you see the tumors here, it would be difficult for me to ablate those and remove all of the disease. And of course, you know that you have disease outside the liver… surgery wouldn’t do you any good.

Last April, he told me that he had removed 19 masses from my liver. My largest tumor now is actually one of only a couple that he did miss during that surgery, despite it being larger than a centimeter at the time. Because of that surgery, I don’t have nearly the same amount of tumor burden now as I did then. Why was I operable a year ago, but not now? I think it, but don’t say it. If he had told me I wasn’t operable because of progression, that would make more sense… Maybe once I actually get to see the written report all of this will be clearer. We leave the office and head to another building to the oncology appointment we are now two hours late for.

I see that your CT from two weeks ago showed a mass near your uterus? Of course, I know what she is referring to. It’s the same thing that I had seen and freaked out about. My local oncologist soothed me back on that as well: “when they took the last tumor out, something had to fill that space. It isn’t solid, just fluid. I wouldn’t worry about it.”

I haven’t seen your scans from yesterday, but I think that it is very likely that cystic mass is malignant, given your history. Of course she does. Of course it is. I knew it even before she said it. We discuss the small hope that the progression occurred while I was off chemo, especially since my tumor markers have stayed stable since then. But more likely? I have failed FOLFIRI. The plan now is to stay with FOLFIRI for a few more sessions and in the meantime, begin to look for trials.

She looks up and writes down several trials that she thinks that I should look into. One of them might have an arm at the Clinic. She will call and ask about the whether the arm at the clinic is open and call me tomorrow about it. That this doctor has a list of trials to suggest to me and will make this one call makes me very grateful that I am seeing her. The majority of oncologists would just tell me to start looking into trials and then leave the room. The rest, I know, will still be up to me. To reach out to the Principal Investigator. To request and collect all of the documentation needed and provide it. To jump through all of the hoops. I am grateful for all of the help and advocacy I can get.

I walk out shell-shocked. I know what failing FOLFIRI means. It means that I’ve officially begun the very final story arc that leads to the end. I will have to begin trials without having a stable chemo option to fall back on except for third (and last) line treatment. The roller coaster ride has now become the type where you stand in an elevator and wait for it to free-fall several floors beneath you.

The three-and-a-half hour drive home is brutal. My stomach hurts. My head hurts. The setting sun is directly in my eyes. Exhaustion wraps around me like a shroud. I am tired of fighting.

In this moment, I am tired of fighting for doctors to be as proactive as I had pictures them to be before I got cancer. Instead, most are overworked and busy and flying by the seats of their pants. I am tired of being spun an over-optimistic narrative about my scans and unsteady assurances that will only break as I get further down the bridge. Perhaps they believe that the optimism will transfer over to reality, but but these fair-weather tales do nothing but lead me quietly down the primrose path to death. They also help with avoiding all of the uncomfortable patient emotions until the last possible minute. I wish that I didn’t have to see that simultaneous look of pity and distancing when they do tell me the news is bad. I’m just… tired. I wear it all over my face and body. My husband can see it as I curl up in the seat next to him. From the drivers’ seat he yells at me to not give up.

Silently, I hope that the tired and numbness will fade and transition over to anger. I know that I will need the anger to energize me so that I can begin navigating the choppy waters of clinical trials. But right now I need a moment. Because today everything got sharply real. Today death suddenly became a potentially near-term event. I hoped beyond hope that I could stretch out for years. But instead I am now trapped in an elevator that is now plunging straight to the bottom.

Arriving home, I eat for the first time since breakfast. I hug all of my kids. I snuggle my son to sleep. I try not to cry, not to alarm them. And then I crawl into bed and assume the fetal position. Nine hours later, my son is in my bed waking me up. Once again, I haven’t stirred during the night, but this time I remember nothing about my dreams. I am heavy, and opening my eyes and getting out of bed seems impossible. But I do it anyway, because my son needs my help getting ready for school, to keep him on task and to set the mood for the day. My dying will crush him. He is not emotionally mature enough to cope with this. This is so wrong! So very, very unfair.

But I know that life was never given to us with a fairness guarantee. I will have to leave him, whether he’s ready or not. I will have to leave my husband too. But first, I will have to put on his shoulders the enormous burden of caring for me while I am sick. That isn’t fair either. I will have to leave my girls- my normal, innocent girls- and force them to grow up to that unfairness of the world far sooner than they should ever have to.

I think about the near-misses. The moments in the past where fate, at one point or another, brought us very close to losing each one of our kids, but didn’t. I think about my 20-foot fall at age 12 where I broke 5 vertebrae in my back but didn’t get paralyzed. I think about mistakes that I’ve made which, by some miracle, I didn’t have to face the worst consequences for. I think about the advantages I had (which most people forget or discard) that helped me to get a well-paying job that turned into a career. I think about how my Dad losing his job in high school ultimately left me starting a new school my senior year of high school where I met my future husband. I think about how- given my upbringing- the deck was stacked against me going to and graduating from college. But I did anyway.

I also think about intuition and warning signs. About how in the months before my diagnosis I told my therapist that I felt like I was just waiting for a shoe to drop to balance out the scales after all of those past near-misses. I think about how I told my co-workers that neither of my biological parents lived to old age, so I had an unfounded fear that I wouldn’t either.

It was never “owed” to me that I was going to grow old with my husband. That we would be empty-nesters and watch our children become adults. That we would travel and see the world together. That I would hold a grandchild in my arms. It was never even owed to me that I would live for years after my diagnosis. But I still hoped that I would. I ache with resentment that I burned through my only two first and second line treatment options before I even hit 18-months past diagnosis.

I still want to scream from the rafters, “I was supposed to grow old!” That I was supposed to at least have a chance to see my middle child start high school. I still feel bitter about always being the youngest person at the chemo center. I still roll my eyes at people complaining about old age. I still feel sad when someone casually says that they “can’t wait” for an event a full year in the future when I am sitting across from them at the table and have a decent likelihood of not even being alive by then.

It’s irrational, but it’s real. And maybe it’s also good for me. Maybe it’s the anger that I need to get back up and out of bed and to make my life as vivid as the dreams that I have been having lately. To make this final arc and this very final chapter, as long and as fulfilling as I still still have the power to make it.

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 metastasic 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 tends to decide 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.