Walking Through Windows

Graceless
Is there a powder to erase this?
Is it dissolvable and tasteless?
You can’t imagine how I hate this
Graceless

I’m trying, but I’m graceless
Don’t have the sunny side to face this
I am invisible and weightless
You can’t imagine how I hate this
Graceless

I’m trying, but I’ve gone
Through the glass again
Just come and find me
God loves everybody, don’t remind me
I took the medicine when I went missing
Just let me hear your voice, just let me listen

All of my thoughts of you
Bullets through rotten fruit
Come apart at the seams
Now I know what dying means

I am not my rosy self
Left my roses on my shelf
Take the wild ones, they’re my favorites
It’s the side effects that save us

Grace
Put the flowers you find in a vase
If you’re dead in the mind it will brighten the place
Don’t let them die on the vine, it’s a waste
Grace

There’s a science to walking through windows
There’s a science to walking through windows
There’s a science to walking through windows
There’s a science to walking through windows without you

– The National, “Graceless”

It’s 12:45 on a Saturday morning, and I can’t sleep. I can’t sleep because I am in pain. The cramping in my lower abdomen is a cake walk compared to the constant sharp stabbing in my lower back. Usually Oxycodone can come to my rescue in times like these, if you give it enough time. But it’s quiet, I’m alone, and the relief I need can’t be lured. I don’t know what it is about baths, but they take the edge off. And what I need more than anything right now is dullness. So I turn on a faucet, gingerly step in, and begin to write.

I’ve grown a whole new appreciation for hygge, which I guess is the danish word for a sense of calm and coziness. I find it when I sit in the recliner with a heating pad, drinking my coffee, and listening to the sound of the household around me. I feel it here, surrounded by liquid warmth in the bath. I feel it when I snuggle up with my husband or one of the kids downstairs. We might watch a tv show, or I might watch them play a video game.

There is nothing productive about it whatsoever. Which is, I suppose, why I have experienced “hygge” so little in my life- and especially since I had kids. My inner voice tells me- “Isn’t there something productive that I SHOULD be doing?” “Aren’t I just being lazy?” Nah, I was just (gasp!) trying to enjoy life. Instead, I wasted every second I allowed myself to “splurge” feeling guilty.

These days, hygge comprises the majority of my time. Because pain has been holding me back from being my formerly “productive” self. And I don’t care. I care very little about just about anything small that threatens to take away my joy. My “high highs” and my “low lows” have both been difficult to come by these days.

This is the part where I have climbed through the jagged, broken glass. I am still bleeding and forming new scars, but can now view every new thing that comes with a sort of numb sardonic or dark humor. I imagine that this is just another phase of my grieving process, but for now, I linger; enjoying the break from the emotional agony- even as the physical pain ramps right back up again.

For example, we still haven’t determined the root cause of this latest round of pain, which sent me to the ER two weeks ago. I went through a guantlet of tests and appointments this week to figure it out. After my transvaginal ultrasound, I had a follow-up with the doctor who ordered it and he described it’s inconclusive results this way: “When you hear hooves stomping, you usually think of horses, but occasionally it’s a zebra.” Apparently, I’m a zebra. So, the results of this week’s tests are… more tests!

The results of the ultrasound can be summarized thusly: 1) Uterus: everything looks normal except for the right corner where the lining is thicker. This is usually a sign of a hidden polyp, but because I’m a zebra I get to schedule outpatient surgery for a procedure that involves filling my uterus with water and doing a D&C to confirm exactly. 2) My softball-sized cyst in my lower left abdomen has a small, solid center. The (insert robot voice) IOTA ADNEX model says that this has only about a 20% chance of being malignant.

Another possible theory is that this solid mass is leftover ovarian tissue that may now be acting like an ovary and spreading feminine hormones around and nullifying my menopause- a condition called Ovarian Remnant Syndrome. It doesn’t usually present this way… but again, I’m a zebra and it matches my pain and bleeding symptoms perfectly. So I gave blood for another Follicle Stimulating Hormone (FSH) test to sort that out. One of these things is causing my intense pain and bleeding. Which will it be? Stay tuned for the next episode of Zebra Life!

The sardonic side of me wishes desperately that I were a unicorn instead. If I were a unicorn, I could just shake my shiny ass and make all of this just disappear.

This afternoon, I got a ping on my email: “Your test results are ready!” I log in to Mychart to discover that they are the results for my Thyroid Stimulating Hormone (TSH) test. In case you were wondering, no- this isn’t the test that was supposed to be ordered. This means that yes- they conducted the wrong test. On the plus side, I am now aware that my Thyroid numbers are extremely low: 0.029 on a scale where the “normal” range begins at the lower limit of 0.4. It turns out that I have hyperthroidism. Great. Now if only I could get the results of the FSH level test that was never conducted…

Thanks to a little bit of online research, I was able to determine that my newly discovered thyroid disorder is most likely due to my current immunotherapy trial. Apparently, thyroid issues occur in about 15% of patients, with the majority suffering from hypothyroidism, and maybe 5% of that group having hyperthyroidism. The zebra gallops again.

I guess that I have to have a bit of a dark sense of humor, when you consider that the very fact that I am dying of colon cancer at 43 makes me a zebra all by itself. When I am still suffering from lady part maladies after having gone into surgery with a chance of having them removed twice now? When surgeons at the Cleveland Clinic miss a mass on my ovary as big as the ovary itself? When I am one of the 15% of Colon Cancer patients who gets peritoneal mets, and that fact alone makes all of my doctors give up on a chance for a cure. When I burn through both first line chemo treatments available to me within 18 months…

I know that I am looking over all of this with a negativity bias. I know that there are some who get diagnosed at a more advanced stage and didn’t get as much time or as much healthy time as I have had after diagnosis. I know that there is always someone who has it worse. I mourn for the people I meet online who don’t have the social support that I have. I mourn for those who have children younger than mine, who might not even be old enough to have memories of mommy before she died.

All of our lives are ruled in part by luck. We are dealt a set of cards, and then are left to play those cards as best as we can. I feel like I’ve played my cards better than some, but worse than others. Overall, I’d like to believe that I at least tried to play the game the best way that I personally knew how to. I made some mistakes. I learned from them. I played by my sense of values and purpose and I reaped a few penalties for that along the way.

And so here I am, at the end, with nothing else to do but to laugh at the world and to laugh at myself. Society, to me, looks like a bunch of little people giving away their happiness, in small fistfulls, every day. Husbands and wives pick at each other because they are restless and need to invent a conflict or reason they were wronged. Parents hover over their kids to get a perfect score, or buddy up with coaches and teachers to try to give them an advantage; all along the way sending their kids the message that “I love you if….”

It looks like alcoholics wasting their precious lives drinking instead of fixing their problems, as if the life they have been given is so much trash, and they can just fix it some other year or decade in the future. It looks like politicians and people that no longer care about investing in the future. Who have normalized denying science and truth in exchange for short-term power and ego. It looks like people who have allowed themselves to be convinced that happiness and health are tied to consumerism, instead of connection. And it looks like people who have sold their empathy and any any false pretense of living according to the tenants of their religion for the price of affiliation with their con man (anti-christ?) leader and never for having to admit that he and they are wrong.

Magical thinking and conspiracy theories are enjoying a heyday right now. Cancer patients, as a population, have always been vulnerable to this. People who think that something they read on the internet will cure their cancer. “Eat only grapes and lemons!” one survivor of a lesser stage cancer tells me as I wonder how reducing my only food intake to sugars could possibly save me.

I get it. I really do. Doctors, frankly, suck at giving out hope to terminal cancer patients. And where the medical profession fails, they seek it out elsewhere. Something that gives them a sense of autonomy and control. And there are more than enough charlatans out there to step in and fill that gap to make some money. Hell, even I’ve read a book or two on alyernative medicine myself… with a grain of salt. Saving the least dangerous or most plausible solutions for when I hit plan Z and no longer have anything left to lose.

Life paints itself like a meadow, but it’s filled with hidden traps and pitfalls. Get an unexpected illness, go bankrupt. Roll the dice to see whether you go back to the beginning to start over with a new set of rules, or whether you go straight to the cematary. Do not pass Go. Do not collect $200. It’s enough to make anyone want to reach for the hammer, break the glass, and walk straight through to some kind of clarity or escape.

Wisdom has taught me that there are only 2-3 keys to happiness in a chaotic, cruel world: 1) focus on what you CAN control; right here, in this moment and 2) release any and all expectations that the world is just or fair. All suffering and grief come from the loss of something that you feel is owed to you. Try to grow, but focus more on the joys you have now than you do on the things you hope to gain through your efforts. Nothing is guaranteed to come to you, because the world isn’t fair.

Finally, feel your emotions, and don’t let anybody tell you that they are wrong. Scream, shout, cry, laugh, sigh, and then walk, write, jump, dance, run, punch something, etc. Celebrate your fallabilty and your humanity, your love, and your anger and your sorrow; and then celebrate life. Because tomorrow is another day. Until someday it won’t be.

It’s 2:30 am now in the tub. And all of the water has gone cold. Technically, it’s already a new day for me as well. But my body needs sleep, and I’m hoping that the Oxycodone and bath have numbed the sharp pain enough to quietly escort me there. If I am lucky enough to wake, I will have another day myself. To kiss, to snuggle, to love, to laugh, and lots of other things that aren’t very productive….. and try to fix all of the typos and errors in this blog posting.

Forty-Two Years

The ocean breathes salty, won’t you carry it in?

In your head, in your mouth, in your soul.

And maybe we’ll get lucky and we’ll both grow old.

Well I don’t know. I don’t know. I don’t know. I hope so.

Modest Mouse, “Ocean Breathes Salty”

One day when I was a kid, I remember watching some special on TV about Nostradamus. I wasn’t old enough to know better, so at the time it seemed like it was a documentary. The special lined up all of the prophecies in order to determine when the end of the world was going to arrive. And then, The Grand Finale: The Mayan Calendar. It calculated that the world was going to end in 2000! While that was still a good 15 years away, I did the math in my head. 22! I will only be 22! That’s way too soon for me to die! 42 was ancient to me then. But 22?! My life would only just be beginning.

And in fact, at 22 my life was just beginning. Within two months of my 22nd birthday, I had graduated college and gotten married. But 42 seemed to be a lot less ancient. Now that I am 42, I would give anything to make it to 62. Ask a 62-year-old if they’d like to see 82, and I’m sure that the answer would be a resounding “yes.” I guess that most of us always feel that there is more to do. More life to live. Of course, I know that I will not see either of those milestones, so I will have to settle for 42.

Very few people get to know how old they will be when they die. So I guess I get to be one of the select few. When my birthday rolled around last Saturday, Facebook lit up with well-wishes. Some people dropped off desserts and flowers and gifts. And I soaked it all in. And everyone mutually agreed to NOT bring up the obvious- that (barring some VERY good luck with treatment from here on out) my 42nd birthday will be my very last. My last birthday. What a thing to have to process. And yet, I went through the day with great aplomb. I got breakfast in bed from my middle child, played a board-game with the kids, watched a movie with my boy and even had an at-home spa day (also courtesy of my middle child). I spent the day with my family and enjoyed it. And by evening, I was tired. So I went to bed.

I always pictured that on my “last” birthday that I would have a huge party and celebrate- especially considering that it’s happening while I am still young. In the end, it ended up being just like any other day. I am different now. I don’t have the energy that I used to have. I’m different now, I don’t care as much about the symbology. I’m different.

For the past 2-3 months, I have felt more like a “cancer patient” than ever before. This coincides to when my last line of chemo stopped working. Physically, I have just grown so tired. Mentally, I have grown tired as well. As I mentioned in my last post, acceptance and apathy look quite a bit alike. In the past 2-3 weeks? I feel like more than just a cancer patient. I’m starting to feel like I’ve begun the slow process of dying.

Good news could potentially snap me back again, but it has been slim pickings lately, and acceptance is worn easier on the body than constant pain, fear and grief. My tumor markers on my trial treatment are still shooting up to unprecedented levels. I am having weird side effects. And, especially in this past two weeks, my pain has grown significantly.

After a week of unexplained abdominal cramping and bleeding, on my team’s direction, I went to the local ER. What they found was that my abdominal cyst and my liver tumors were slightly larger, so they sent me home. This week I had a follow-up with my gynaecological oncologist. He’s concerned about the bleeding. I should be past the post-menopausal bleeding phase by now. So next week, I have a trans-vaginal ultrasound and depending upon how that goes? A uterine biopsy. Add those to the liver biopsy and scheduled follow-up with my general practitioner, I will be traveling and going out for appointments every day next week. Look at all of the things that I get to go out and do during quarantine! I bet you are jealous…

Speaking of, my trip to the ER last weekend was not without exposure and suspense. I checked in right in front of a man who had apparently already been in the other local hospital system for COVID-19 after traveling back to Ohio from NYC. I didn’t catch the whole story, but for whatever reason he had been asymptomatic in quarantine and left or something, and now he was right behind me, feverish and hacking. He was wearing a mask, and I was wearing a mask, so all good right? And then a nurse asked me to take my mask off right there to stick a thermometer under my tongue. Something was definitely wrong with this process, but I only have the energy to fight so many things. I am officially one week past the incident with no COVID-related symptoms YET. I’m still hoping that that’s one medical catastrophe that I can avoid.

So… here I am. Forty-two years and six days old, with lots of medical warning signs going off all over my body. Lots of things could be changing already in the week or weeks ahead. And all that I have now is questions. Are my body aches and persistent fatigue because of the treatment or the cancer? Why do I now sleep ten hours or more a night? Do I have a uterine tumor, thus far undetected on any scans? Is my cancer on the verge of exploding everywhere because my current trial treatment isn’t working?

Do I have two months, six months or ten months left? Is that miracle that lets me stay around longer still hiding under a rock somewhere? Do I get to go out and enjoy the summer, or am I about to take a decline? Do I get to see my oldest daughter start high school? Do I get to vote in the next election? Do I get another Christmas with my family? Do I get to see 43? So many things out of my control. The only thing that I do know is that I have today. And it’s supposed to be a beautiful day. I think that I will take an Oxycodone and get myself outside…

The Funk

“As life gets longer, awful feels softer
Well, it feels pretty soft to me
And if it takes shit to make bliss
Then I feel pretty blissfully”

– Modest Mouse, “The View”

I chose a cynical quote today to match my mood. I’ve always unintentionally equated acceptance with apathy and I guess that I am now seeing that borne out with my latest revelation. It’s 12pm, and I haven’t done a single thing today except roll myself up in a ball on the couch, emerging to occasionally surf the internet.

In order to understand how I got this way, we’ll have to rewind to yesterday morning. Mentally, I was already logging concern with two physical symptoms: My lower left abdominal pain increasing significantly, and some mentrual-like bleeding occurring many many months post menopause. And then I get the email- “Your test results are ready”. Since all of my other bloodwork had come in last week, I knew what this likely to be my tumor marker results.

I sat myself down at the and gave myself the talk. “They are likely to go up“. I called my husband up for emotional support while I opened them. And of course, I was right. Not only did my CA 19-9 jump 40 points, but my CEA, which has not gone above the normal limits since diagnosis, popped up as well. I processed. Bad things are afoot.

As a distraction, I went out walking with my kids through the trails near my house. It was a gorgeous, sunny day with the perfect temperatures. Going out into that perfect day was like getting served my favorite meal with a dead fly on top of it. There is no way you I going to be able to enjoy the meal, because I can’t get past the fly. It’s spoiled everything.

I suppose that the “dead fly” analogy could also be applied to what it is like to live life fully after being given a terminal diagnosis. Once hope for the future has been taken away, you can never really enjoy it again with full abandon. You can go on the coaster, but you can’t stick your hands in the air and just …let go. The guarantee of landing safely at the bottom has been taken away from you.

I arrived back home, happy to have spent some time outside with my kids, but exhausted- with my ever-present abdominal pain pulsing louder than ever. I head upstairs to use the restroom and out comes a sea of bright red. Now what?

The answer, like most things with cancer, is neither quick nor clear. Even though I’m suddenly bleeding bright red like I am 16 years old again, It’s not enough blood lost to cause health issues. Even though I am in pain, it isn’t enough that it can’t be managed with my current pain prescriptions. I am not running a fever. So this is not an emergency in cancer land. My body is screaming “hey stupid- something is wrong!” And I wait. I wait to talk to a doctor to get to a scan to find out what it is this time.

I send a message to the contact for my tri al medical team asking whether I can move my scans up, and then I am supposed to go back to life-as if-it-will-ever-be-normal until I travel for treatment on Monday.

I’ve done the emotional work. I didn’t grieve. I didn’t fall apart. I didn’t scream or wail or really even cry much. But I am still scared. Mostly because what is happening to me has the appearances of something immediately very bad.

My pain is on the left side of where my uterus is located, so if there is cancer there pressing on my uterus or perhaps puncturing through, it will either need to be immediately addressed or it will cause damage sooner, rather than later.

And so I think, like I have to think: Is this gonna be the thing?

Is this the thing that I don’t come back from? Is this the thing that shifts the weight balance and I have to hear the words, “There’s nothing we can do further, it’s time to consider hospice.”

It might be. It also might not be. But I have to wait. I have to wait to get a scan, whether that occurs 2, 3 or 4 weeks in the future (or sooner, if shit really hits the fan and I earn a luxurious hospital vacation).

I haven’t fallen apart. But I am just sad enough and scared enough for a funk. To wonder what the point is of getting up, showering and doing something productive.

The cynic is in me today and she isn’t budging. She feels like a hamster on a wheel. Running and running and running so that she can feel like she’s in control. So she can feel like he’s moving when she’s really just running in place. When she’s really just at the whim of powers greater than himself. Acceptance or Apathy? Does it matter? The ending is still the same.

I’ll close out today’s mood with yet another Modest Mouse lyric. Nobody captures cynisism with words quite like Isaac Brock:

“I said something but I didn’t mean it

Everyone’s life ends but no one ever completes it

Dry or wet ice, they both melt and you’re equally cheated”

– Modest Mouse, “The Dark Center of the Universe”

Quarantine Chronicles

Oh, we’re so disarming, darling, everything we did believe
Is diving, diving, diving, diving off the balcony
Tired and wired, we ruin too easy
Sleep in our clothes and wait for winter to leave

Hold ourselves together
With our arms around the stereo for hours
La, la, la, la, la, la, la, la
While it sings to itself or whatever it does
When it sings to itself of its long lost loves
I’m getting tied, I’m forgetting why

Tired and wired, we ruin too easy
Sleep in our clothes and wait for winter to leave
And I’ll be with you, behind the couch
When they come on a different day, just like this one

We’ll stay inside till somebody finds us
Do whatever the TV tells us
Stay inside our rosy-minded fuzz for days

The National, “Apartment Story”

If you’ve noticed that my blog postings have been more spaced out recently, there is a reason for that.

You have probably already gleaned by now that I don’t tend to preen and edit these posts tirelessly before hitting the “post” button. In fact, most of my blog posts are hammered out in a single session that leave me nothing more than a blubbering mess. I am okay with doing it this way. When I began, I declared this blog to be my “public therapy.” Pounding out these posts, as I do, keeps things raw, but also leaves them prone to roughness and small errors (which I, admittedly do go back and polish a bit when I re-read them in the days after posting). While that isn’t very professional, this blog has never been professional. It’s instead deeply, deeply personal.

The emotional toll that these posts take on me leads to the desire to write them in privacy- something that has been a rare commodity with the husband and kids now hunkered up with me 24/7. Nothing is more awkward than one of my kids walking by while I am sloppy crying and typing and coming over to ask, “Mommy, what’s wrong?” forcing me to come up with some lame excuse. My solution to this has been to just avoid writing altogether.

Side Note: Yes, my kids do know that I have a blog. No, they don’t read it. They don’t want to and I don’t want them to, so I guess that it’s mutual. For right now, I want my girls to stress only about the types of things that middle school girls usually stress about- friendship drama, schoolwork, etc. My son is more existential (yes, he’s a lot like his momma). I can tell that he thinks about what is happening to me quite a bit. Although we try not to hide anything from the kids, my son especially isn’t emotionally ready for the raw language in this blog quite yet. There will be plenty of time for my kids to visit this later if they choose to.

Having family around constantly has led to another type of avoidance altogether; one which is also contributing to my reluctance to write. Avoidance of THE SAD AND SCARED FEELINGS. This could be construed as unhealthy, but it isn’t as bad as it might first seem. It’s just that these days I have been wrapped in a warm, safe, cocoon that is buffering me from them. Creature comforts and love saturate me. In our family, we do not shy away at all from physical contact and snuggling. Because of this, I realize that in many ways I am actually feeling less isolated under quarantine than I have been in a very long time. Right now, with regard to my health, I am swimming without a bottom. My family has given me something safe to hold onto.

Of course, I still know that I am not safe. Periodically, that realization punctures through and breaks down the fluff until I break down. But those moments have been much fewer and further between.

In my post, “Que Sera Sera” I discussed the concept of letting go of expectations and control, and how it’s the hardest thing that I’ve ever had to learn how to do. It’s been a long search, but I think that I’ve finally located the crack to allow these concepts to seep in. I am finally letting go of expectations that will only lead to more suffering down the line.

I am now two treatments in to my clinical trial, with my first scans in about 2-3 weeks. I know that there is only a small chance of success. I know that there is a very high likelihood that my next scans will show progression. I am expecting nothing better. In so doing, I am hoping to avoid another wave of crashing grief when those things inevitably happen. Adding fuel to this is that I’ve had two more infections in the past 6 weeks (UTIs that have been difficult to avoid ever since my right ureter got blocked by my pelvic tumor, leaving some permanent compression in its wake). This means antibiotics. Some studies have shown that immunotherapy drugs such as the ones I am now taking are a lot less effective with antibiotic use, thereby lessening the chances even more that this treatment will work. I could scream and bemoan my bad luck, yet again- but what would be the point? It is, what it is, and I can’t control that. And the results on my next scan as a result of it? Well those will be what they will be as well.

Lately I’m focusing more on the good things, which I have now come to consider to be bonuses. It’s a huge bonus that my trial is still going at all with so many of them now being cancelled across the country. I think back and realize that had I not gone for a second opinion when I did, I would have continued with my prior line of chemo under the assumption of stability and would only JUST NOW be figuring out that I had progression. And with the situation what it is right now with COVID, probably would no longer be eligible for acceptance into any clinical trials.

I also consider it to be a bonus that I’ve so far avoided COVID-19, despite traveling across state lines every week or two and staying a night in a hotel each time to participate. And the side effects from the trial drugs themselves? Minimal. So far, after two infusions the side effects are much reduced from what I usually have during chemo. Instead of grieving over the loss of social outings, like the cancelling of the National’s Homecoming Festival (which I had REALLY been looking forward to, with my favorite band- who I probably not live to see live again- headlining both nights) I am focusing on the gift of being in good health and being surrounded by my family during these precious months.

In summary? I’ve learned that when expectations fly away all that remains is gratitude for the things you have and are given. In literary terms, I believe this means that we are finally reaching the arc of my story; or that moment when the protagonist finally learns her lesson, thereby undergoing transformation. Not a lesson given, but instead sought out on its own.

All of my prior beliefs that all things can be controlled, or that “doing things right” means that you will achieve certain outcomes have been tossed off the balcony, and they are now in free-fall beneath my feet. If you are looking, you can find me behind the couch singing along with my arms around the stereo- until the denouement finally comes along to find me.

Images of You

I am not the only traveler
Who has not repaid his debt
I’ve been searching for a trail to follow again
Take me back to the night we met

And then I can tell myself
What the hell I’m supposed to do
And then I can tell myself
Not to ride along with you

I had all and then most of you
Some and now none of you
Take me back to the night we met
I don’t know what I’m supposed to do
Haunted by the ghost of you
Oh, take me back to the night we met

Lord Huron, “The Night We Met”

I have many images of you. You, in high school with your long, multi-colored hair and blue combat boots. You, smiling and goofing off with your friends. Playing lava tag after dark. You, in college partying. Laughing, joking, procrastinating.

You already knew then that you wanted to spend the rest of your life with me. You knew that you had to get your act together and graduate in order to make sure that life happened. And every weekend you traveled that 90 minute trek in your aging silver Oldsmobile Omega, laundry in the back, to visit me.

And me? I knew that I wanted to spend the rest of my life with you as well. Me, holding on to you for dear life before your three-week trip to Hawaii after graduation. Me, looking forward to you coming every weekend. I chose you. My best friend. My kindred spirit. The one with my sense of humor and sarcasm. The one that I could talk about the BIG THINGS with.

I have images of you. Looking at me. I didn’t need romantic gestures. I just had to look at those large, piercing blue eyes. All of my answers were right there in front of me.

I came across a photo album of pictures of you, and of us, from those high school and college days. The days before you had lines on your forehead and dark circles on your eyes. We had the whole world in front of us, and we had each other. We had everything. And we were so… care free. Seeing you in those photos struck me. You, unencumbered. What I wouldn’t give to see you look that way again.

Years of marriage chipped away at that a bit. The years with small kids are always weighty. Suddenly, we were now not just responsible for ourselves. We had another person, and then people to support. Little people who depended on us for food, shelter, creature comforts, and love. We got tired. Sometimes, we snapped at, or resented each other.

It was important to get away, just the two of us, to reconnect. Date nights, concerts, vacations… Seeing our favorite bands live was our mutual escape. Perhaps slightly more for me than for you. I think that you went out to them with me because you loved to see me happy as much as you wanted to see the band yourself.

Another image. You and me at Lollapalooza ten years ago. You got out your camera and took a picture of us. You wanted to capture that look of carefree joy on my face. The look of joy that brought you joy. That weekend ended with Arcade Fire on the South Main Stage. They closed with “Wake Up.” The crowd was so caught up in the moment that the main chorus became our joint anthem long after the band had left the stage. We all sang it as we moved like cattle through the crowds. We all sang it as we poured out into the warm summer streets of Chicago.

You never sought the sky. All you wanted to do was to get married to me, have a solid job, and have some kids. Five years after we were married, we had all of those things. I loved all of those things as well, but I got greedy. I wanted something more. I wanted a separate identity all of my own in the form of a career, and I invested too much into it, assuming that it would pay me back some day. And when it didn’t, I struggled. You tried to tell me. You tried to pull me back, but I wouldn’t listen. Until I had to.

You were not in the room when they told me that I had cancer. The staff told you to take the kids out of the room, because the resident hospitalist needed to speak to me over the phone. You were not prepared. You thought that we were on the verge of laughing about that time that I had to be admitted to the hospital over digestive issues. When you came back to the room, I told you what the doctor had said. Your entire demeanor morphed into shock and disbelief. You were not prepared to hear the words, “malignant tumor.”

You had everything that you ever wanted in life. But you were not prepared for the rules to change in the middle of the game. You didn’t ask for much, and you worked hard for what you had. A dark and arbitrary plot twist was not supposed to be part of your story. When you had to leave the hospital that night to get our kids settled in for sleep, I saw something in your eyes for the first time. Something that hasn’t gone away since. That something was, and is, fear.

These days, you are carrying it all. Taking care of me. Taking care of the kids. Taking care of all of your work obligations. I try to remind you to take care of yourself. I try, every day to show you how much I adore you. I try to make sure that you know how amazing you are as a father, a husband, and a friend.

I would do just about anything to hit rewind. To see the worry leave your face and the weight leave your shoulders. To see the hope that you once had come back. To see the fear finally leave your eyes. What I wouldn’t do, to go back to that place we once had, that we will never get to experience again. Even if just for one night.

But we can’t rewrite the chapters of the past. We found each other. That’s something. We created three beautiful human beings together. That’s something.

And I know how you feel. I know that you wish that your story could end with mine. That you could follow me into that dark tunnel. But you can’t. Because you have to stay here and finish raising our children. To let them know that you will not leave. To love them unconditionally. To be the one that they can always go to for anything.

I have many images of you, far in the future. Watching the kids graduate. Moving them into college. Holding our grandchildren. And maybe, some day, finding someone new. You, smiling with your friends, your children, your family. You, partying and laughing. You, living life, once again, with hope instead of fear.

What it’s like to have Terminal Cancer During the COVID-19 Outbreak

As I stared at my shoes
In the ICU
That reeked of piss and 409

And I rationed my breaths
As I said to myself
That I’d already taken too much today

As each descending peak
On the LCD
Took you a little farther away from me.

Away from me…

Death Cab for Cutie, “What Sarah Said”

People with stage 4 cancer have nerves of steel. We’ve dealt with dire predictions. We’ve grown comfortable with uncertainty and fear. We’ve stared into the faces of our own mortality. It takes a lot to shake us.

As someone with stage 4 cancer myself, I can tell you that my brain has gone to many places and been through many phases over the course of the past several weeks:

  • Three to four weeks ago, I remember thinking that I’ve withstood SO many rounds of having my hopes crushed and worst case scenarios that if I actually caught corona-virus that I would pretty much at that point just be dumbfounded, have one last drink and say goodbye. I even entertained the thought that death from the virus might actually be less painful and drawn out than cancer…
  • Two to three weeks ago, I remember feeling that it seemed as if the rest of the world had- finally- caught up with how I’ve felt every day for the past 18 months. They are finally experiencing what it is like to have your whole world turned upside down. They are feeling the tiniest shadow of what it’s like to worry about getting sick or dying, and to not know what is coming next. I felt for the world, but at the same time felt oddly comforted to not feel completely alone in feeling that way.
  • Two weeks ago, the reports started flooding in from Italy. There were stories of not being able to save everyone, leaving the elderly and persons with co-morbidities to die without treatment since there weren’t enough ventilators to go around. They were taking ventilators away from people who were deemed to not have enough life years left to be “worth saving” in favor of those who did. I took deep, hard, mental stock for the first time that people like me were now considered to be acceptable sacrifices for the otherwise healthy and newly scared people who might catch the virus.
  • One-two weeks ago, I learned that Washington State had briefed it’s medical personnel on a triage plan very similar to that of Italy’s- persons 80 and over or persons under 80 with a co-morbidity scale of 5 or more were to be refused treatment as soon as need approached the level of ventilators available. The message came to me via a Facebook post from Washington State physician Dr. Morhaf Al Achkar, who has stage 4 lung cancer himself, stating that his own cancer put him on the scale at 6.
  • One week ago, I read this article: https://www.healthleadersmedia.com/clinical-care/medical-worker-describes-terrifying-lung-failure-covid-19-%E2%80%94-even-his-young-patients This was the first time that I’d read about the experience of someone dying from this disease. It was not, as I’d imagined several weeks earlier, a quick and relatively painless death. It was torture. You basically slowly drown to death on your own lung fluid. Think this isn’t torture? Try waterboarding.
  • And in the past week?
    • I’ve witnessed politicians, internet trolls, and Covidiots coming out of the woodwork to say that sacrificing some lives for the sake of the greater economy was the best plan.
    • I’ve read about Lupus patients being denied medication because our President said on camera that it could be used against COVID-19, despite very dubious evidence to support that position.
    • I’ve read an account from a hospital in MI that was not only out of ventilators and masks, but out of painkillers in the ICU altogether.

As you can imagine, all of these events have had a profound impact on the cancer community as a whole, but especially among those of us with stage 4 (terminal) cancer. Concurrent with all of the events above, I also read about several things that were happening specifically to those of us within the cancer community:

  1. Clinical trials are being cancelled. Trials that stage 4 patients have been counting on for a chance to extend their lives. Trials that they went off chemo several weeks prior to in order to even qualify,
  2. Surgeries are being cancelled. Surgeries to remove tumors and disease have been put on the shelf until some point in the unknown future.
  3. Chemotherapy itself is being cancelled, as hospitals and doctors have to make the tough choices as to whether bringing someone in for treatment is more or less dangerous than the risk of them getting further immune-compromised, or possibly even being exposed to the virus while going in for treatment. Terminal cancer is scary enough. Terminal cancer without treatment is the wild, wild, west.

All of this has put myself, and many others like me, in a very particular psychological and emotional state. I worry about my own clinical trial that I am depending on to extend my life. I worry about people who feel invincible ignoring social distancing rules and exposing my family to the virus. I worry about the country “opening up” again and all hospitals being so overloaded that I will need to hide in my bunker to protect myself for the rest of the time that I have left on this earth. I worry about what will happen if my husband, who is my primary caretaker, gets this virus. I wonder what will happen if I get this virus…

I have nightmares of being locked up with the other people not deemed worth saving in the hospital, left to die without anyone I love around me. I get visions of being tossed into the wheelbarrow of dead people being ushered down the street like in the Monty-python movie.

Seems ridiculous, right? But it’s not really all that far from the truth. People who die of this virus, even on a ventilator, die, gasping for breath, all alone and away from their family. Everyone dying right now from ANY cause are now quickly buried with maybe only one family member present. Everyone dying right now is being denied even the humblest of memorial services or even celebrations of life.

Even if I die from cancer, I wonder- will anyone be able to come and say goodbye before I die? Will I ever get a memorial service? I can assure you that all of these things have led to some very serious and very disturbing conversations between my spouse and I behind closed doors.

What if… there aren’t enough medical staff to come out to my home and give me hospice care when I get sick? What if… they begin rationing and diverting even pain medications away from people with cancer and to only those COVID-19 patients deemed worthy of saving? What if no matter whether HOW I die it is in utter, complete agony and without medical assistance?

Should I even bother to inquire about treatment if I catch the virus and risk getting quarantined away without treatment and left to die? Do I even want a ventilator if I WERE offered one? I have a living will and have made it clear that I don’t want to die on one. Especially all alone. I would only want one if it meant a chance at recovery and several more months at life. Is it even realistic to think that would be the case? I am not the only one feeling the weight of all of this right now. These are thoughts that I should never, ever have to think, conversations that I should never, ever have to have and decisions that I should never, ever have to make.

Please think of me, and others like me as you decide that it is okay to go back to life as usual. Please think of me, and others like me as you decide that there are acceptable sacrifices to be made among the elderly and immune-compromised for the sake of the economy.

Signed,

A human being.

Tunnels and Time Capsules, Part 2

It’s not the honors and the prizes and the fancy outsides of life which ultimately nourish our souls. It’s the knowing that we can be trusted, that we never have to fear the truth, that the bedrock of our very being is good stuff

As human beings, our job in life is to help people realize how rare and valuable each one of us really is, that each of us has something that no one else has- or ever will have- something inside that is unique to all time. It’s our job to encourage each other to discover that uniqueness and to provide ways of developing its expression

Fred (Mr.) Rogers

When it’s all gone, something carries on… When my blood stops, someone else’s will have not. When my head rolls off, someone else’s will turn.

You can mark my words, I’ll make changes to earth

While I’m alive, I’ll make tiny changes to earth

Frightened Rabbit, “Head Rolls Off”

Audrey, Lucy, and Jack,

I’ll use this part to pass on whatever “sage” advice I’ve learned through the act of both living and also through learning to die. I am not passing these along under any guise that I was a perfect person (far from it), or that I always followed them myself. They are just more or less “truths” that I’ve arrived at that I hope that you can learn to embrace at a stage much earlier than I did.

1) Happiness and love are the two most valuable things that you will ever possess in this life. Don’t ever lean on or sacrifice those things for anything. Not to please someone. Not for money. Not for material possessions. Hold these things close to your heart. Because they are the core of life.

2) There is no other “you” in the world. So what do you have to offer it? What do your unique talents, personalities and perspective have to offer the world? Think about those things and use them to make some tiny changes to the earth while you are still alive. Make tiny changes every day. They might have a ripple effect that you never even get to see. Do them anyway. All three of you are the “tiny changes” that I am most proud of in my life. My greatest happiness in life has been to have you and to know that I am sending three authentic, amazing people out into the world for long after I am gone.

3) Purpose is vital to happiness. When you lose it you lose direction and all kinds of other bad things and dependencies swoop in to take it’s place. Always have a purpose, and if life throws you around and you lose it? Find another one.

4) Love yourself. Love your crazy. Love your loud. Love your creativity. Love your sense of Justice. I know that I already love all of those things about each of you.

5) Be your own truth, and tell the truth. But be prepared. Many people will want to squeeze the authenticity right out of you. They might punish or isolate you for refusing to conform and put on a facade. Being your truth will at times have unintended consequences. Decide what things to fight for and what things can wait another day. An added bonus to honest living- not ever having to cover, hide or lie to protect the truth.

6) Always try be a good person. All three of you already are. Please note that I didn’t say perfect (anyone claiming or projecting that is probably a fraud, btw) but do try to be good. By that, I mean always try to do the right thing by your values, and by your conscience. Nothing you can get by crossing your own sense of right and wrong will ever be worth gaining guilt or regret. Or not loving yourself as much as you deserve because of it. You will screw up time and time again. Know that when you do, tomorrow’s a new day. Tomorrow is another chance to make the right decisions toward being the best version of yourself that you can be.

7) You can only control yourself. You will meet many people in your life below your level in terms of character and means of discourse. The world will always have toxic people. Never lower yourself to try to meet them eye-to-eye. If they have proven that they can’t meet you at the higher level it’s better to limit interaction altogether than give up any of your time or happiness to them.

8) Don’t give up. Work hard for the things, people and passions that matter. But don’t sacrifice your people and passions for work that doesn’t matter.

9) Understand that there are some things beyond your control. Fix the things you can, but have the foresight that I did not have to recognize the things that you can’t. There will be horrible things that break your heart that are driven by forces beyond your control. Don’t sacrifice your health and well-being to ruminations and anger. Be angry, be sad, be hurt. Cry at the injustice. And then let it go.

10) Know that who you choose as your life partner is very important. Do not settle for anything less than you deserve. Do not settle for anyone that loves themselves more than you. Do not settle for anything less than what your Mommy and Daddy had. This will be a bigger determinant of your future happiness than you can even imagine.

I have so much more to say, but I fear that if I go any further that it will just become rambling that will dilute all of the good stuff. So I will stop again for now.

See what I’ve done? I’ve done a darn good job at putting off the hardest stuff, still. I need to write a personal message to each one of you individually. That will be the subject for a future entry, when I am well-stocked with tissues.

With love. Always,

Mom

Tunnels and Time Capsules, Part 1

There is light, but there’s a tunnel to crawl through

There is love, but it’s misery loves you

We’ve still got hope, so I think we’ll be fine

In these disastrous times, disastrous times

Frightened Rabbit, “The Oil Slick”

To my Audrey, Lucy and Jack,

On a Thursday afternoon in mid-to-late March of 2020, we all needed to get out of the house. Unfortunately, we couldn’t really go anywhere. All of the restaurants were closed and social distancing narrowed down the places that we could go to significantly. So Daddy had the idea to jump in the van and drive around Dayton playing a game of rubberneckers. If you recall, this was basically a scavenger hunt with points for things that you see while traveling. Shouts of exaltation were pronounced with every find, and every tough item (station wagon, weather vane, etc.) was complained about excessively. It was a typical scene for our family. There was a lot of laughing, a great deal of sarcasm and a bit of trash talk. It’s a scene that most would look upon and think that we were a normal family on a normal day. They wouldn’t be able to see what our family has been through so far, and that the toughest times are still ahead. A casual observer would have absolutely no clues that our family, and seemingly the whole world, is currently on the verge of some very dark days.

I know that it’s quite likely that you won’t remember this day, or even this game. But you will remember these months to come as one of those “before and after” periods of your life. You will frame events in your childhood as, “Was this before ____ or after?”

In the past two weeks, it seems almost as if the rest of the world is starting to catch up to where we’ve been for months: First the disease, then the false hopes of resolution, the panic of realizing impending doom, and then waiting; hanging on to the news for increasingly pessimistic developments. Most will eventually emerge to brighter days at the end. But some of us won’t. And some will be left grieving for someone that they love. It’s a dark, miserable tunnel, but it’s one that I am afraid that you must go down. As much as I would give anything to protect you from it, I cannot. And so you must emerge, wiser and stronger, when you get to that light on the other end.

What is a tunnel for you is more like a time capsule for me. At some point, the lid will be sealed and I will become stuck somewhere in your past. I will become memories that fade a bit with time, photographs, and Facebook postings. Because I do not know exactly how long I can walk with you, I need to finally do the hard work that I’ve been avoiding. I have to carve some words into this wall with hopes that some day you will come back with a flashlight to read them. There is so much to be said, and most of it will result in me crying buckets all over the keyboard. Part of my avoidance has been due to struggling with where to begin. No more. I will have to just start writing and decide where to go from there.

First, know that I didn’t want to leave you. I fought like hell to stay here longer, but the universe reminded me that I was not special. At times, I want to scream from the rooftops, “This isn’t fair!” But doing that doesn’t change anything. I can’t change what’s going to happen to me, or to you, or to your Dad any more than I can change a world that seems to be falling apart all around us. I’ve bargained and pleaded. I’ve lined up planes on the runway. I’ve screamed into the void. I’ve cried deep, mournful cries. I’ve had to live with the mantra of trying to change what I can, but accepting that I can’t change everything. Through this process, I’ve been able to get to a sort of sad place of peace with all of this. I know that these weeks and months will stay with you. I hope that I don’t disappoint, fail or scare you . I hope that I can teach you that it’s okay to be human. That it’s okay to be sad and vulnerable at times, and okay to brave and resilient at others.

Secondly, know that despite everything that is going to happen over the next several months, you are going to survive. It will be very difficult and very messy but you will survive. Our family will survive. No matter what the world throws at you, you will always have your Dad. And he is the best dad, husband, and overall person that you could possibly have in your life, just like you are the best kids that he could have in his. Dad’s love for you and Dad’s need to take care of you and keep you safe runs as deeply as it can go. You will also always have your siblings. As your Mom, I can tell you that I see it. I see that you love each other. And I know that no matter how different you are or how much you argue, the Stokers are a unit that will always look out for each other. Because you are mine and Dad’s children. Because you are resilient. And because you have each other’s love. Please don’t ever take that for granted or lose it.

You will always have my love too. I can guarantee that mom’s love for you is so big, so dense, so bright white and glowing that there is no way that it could ever dissipate with death. It will wrap itself around all three of you and around your dad for as long as you walk the earth and beyond.

I can barely contain how incredibly proud I am to be your mom. I have had the pleasure of watching all three of you grow into the young people that you are right now. I love to watch you get lost in play or wrapped up completely in a creative project. I love to see you work towards a goal. I love to hear your emerging and growing thoughts about the world. I love to see you stand up for yourselves or for someone else. I love watching you become more of the you that you are every day. You get to decide exactly who you will be by the time you grow up, and how you will change as you continue to live and grow through life’s experiences. I do not know where I will be when you become what you become, but I promise you that if there is a way for me to keep watching you I will. Because the very thought of missing out on all of that aches me.

I don’t get to know what the future will hold for either the world, or for you. But I want you to know that I know that you get through it. To yell and cry when you need to. To not get so stuck in the bad that you miss the good. To courageously be yourself when the world tries to change you. To make mistakes and learn from them. And to either conquer or make peace with whatever challenges fall before you. You are all already imperfectly amazing human beings destined to become even more imperfectly amazing adults.

The keyboard is beginning to get very wet, so I should probably pace myself. There is so much more that I want to say to all of you and each of you, but I have to stop for a bit.

More to come. Love, Mom.

Que Sera Sera

 
When I was just a little girl,
I asked my mother, “What will I be?
Will I be pretty? Will I be rich?”
Here’s what she said to me
“Que sera, sera
Whatever will be, will be
The future’s not ours to see
Que sera, sera
What will be, will be”
When I grew up and fell in love
I asked my sweetheart, “What lies ahead?
Will we have rainbows day after day?”
Here’s what my sweetheart said
“Que sera, sera
Whatever will be, will be
The future’s not ours to see
Que sera, sera
What will be, will be”
Now I have children of my own
They ask their mother, “What will I be?”
Will I be handsome? Will I be rich?”
I tell them tenderly
“Que sera, sera
Whatever will be, will be
The future’s not ours to see
Que sera, sera
What will be, will be
Que Sera, Sera!”
 
“Que Sera, Sera,” written by Evans Raymond B / Livingston Jay
 
In the past week, it seems like the entire world has been turned upside down.  Schools, events, and businesses are closing. Almost everyone I speak to says something along the lines of “It all just feels so surreal”. It feels surreal to me too. The only difference is I am already well-acquainted with this feeling. That feeling that everything that you know has suddenly changed.  That scary feeling that you don’t know what is going to happen next. 
My world has also been turned upside down, but on a much larger scale, and it’s been that way for about eighteen months now. My husband and I still occasionally turn to look at each other at night, with the full weight of the world draped over us like a blanket and he might ask “What happened, love? How did we get here”? “We just did,” I now answer, and the discussion ends there, because there are no longer any other words to say.

 

With these latest world events, I now find myself in the unique position of facing several crises at once:  1) that my current prognosis has shifted from years to months, 2) that the world is now facing a pandemic that could kill me much quicker than the cancer will, and 3) that I have now essentially been sequestered to my home for what may be the sum of the “healthy” time I may have left. I have already had to cancel a trip to Chicago with my daughters and some girlfriends. We were going to go to museums and see a show and I was going to make some memories- both with my daughters and with my friends. That’s off now. So much for a bucket list, and for going out and “living life to it’s fullest.” 

Even if I don’t get the virus itself, I still have to worry about the hospitals being overrun and the possibility that my treatment or trial will be postponed. There seems to be no end to the things to be worried and sad about. Many people are feeling very worried and shocked. They feel scared for themselves and also scared of passing the virus to weaker family members or friends. That feeling of unease and fear of the unknown is just the tiniest shadow of the frustration and fear that I have been feeling, every day, for a very long time now.  Unsurprisingly, all of this has caused the blues to come visit me. They creep around the corners looking for weak spots to slip into. And I feel the weight of it dragging me down.

But I have been here before. It isn’t my first time wading in dark, cold waters. It’s just me grieving again.

The only thing keeping me going right now is the hope that comes with a new clinical trial. But I am also smart enough to know that it’s far more likely to not succeed than succeed.  It will take 2.5 months to wash my prior chemo out of my system, begin treatment and get my first CT scan six weeks in.  A lot can happen in 2.5 months.  I could progress quite a bit. Despite that, I know that I have to take a chance, because third line chemo offers very little in the way of hope. A trial offers hope. Hope of a long shot chance that I might catch some success in a jar and follow it’s light down a path that gives me more time.

In the meantime, I work through the colors.  Blue is the sadness creeping in at the corners.  Yellow is the anxiety that rises and pours through my chest.  But I see another color that began in my brain that is now soaking into my neck and shoulders.  It’s the dull silver-grey sheen of acceptance.

“Que sera, sera, whatever will be, will be. The future’s not ours to see. Que sera, sera.”

My grandmother on my bio-dad’s side used to sing this to me before bed when I was little. Despite my bio-parents divorce when I was very young, my brother and I would stay at my grandparents’ house quite frequently. Sometimes weekends. Sometimes, longer during the summer. They lived in Huber Heights, Ohio in a small, original Huber home shaped like a brick.  Grandma had embraced old age well before her time.  She wore nightgowns and smoked, and had severe arthritis. She was best distinguished by the tall grey, curly beehive she wore atop her head.

She was only 65 when she passed away at St. Elizabeth’s hospital.  That was where I witnessed her frail, grey frame against the wires and white sheets. That was where they told me that she was dying and that I had to say goodbye. A sudden, overwhelming sadness came over me, triggering a series of sobs that shook me as I broke down in the hallway.  I flipped over the bucket and let my mourning pour out with a long, powerful splash onto the floor.  And once it was empty?  I pulled myself together and then after that, strangely, moved on. She loved me, but I knew that she had a special place in her heart for my brother. She loved him more. At least that’s what Mom would always tell me.

In Grey’s Anatomy terms, she was my brother’s “person.” The person who loved my brother unconditionally during a time when nobody else did. I think that the reason she loved him that way because she knew that my father- her son- didn’t.  When she died, I think that it hurt my brother more than anyone else. Thirty years have passed, and I suspect that he hasn’t mourned anyone as hard since.

Although my bio-parents marriage happened largely before I started collecting memories, my mother used to tell me that “if he ever loved anything, he loved you.” Though most of my memories of him are post-divorce, I don’t remember feeling love. I just saw a bored man with a bowl haircut, who attempted to talk to me during scheduled visits. If I talked back at all, it was in short concise sentences. I was the quiet kid, remember? 

At home I would either stay in my room or wander off and make up innumerable outlandish fantasies. Of fairies living in the flowers. Of the village of fairies living in the Christmas tree. Of the perfect life I was gonna have when I grew up. Around him? I just wanted to be somewhere else, and was able to that perfectly clear to him even at the age of six. Much of this could probably be attributed to the fact that my mother trashed talked him constantly.  Even then, she always referred to him was “midget stick” and minced no words explaining to me exactly what she meant by that.  Despite that, I recall feeling that there was something about him that I didn’t like.  He didn’t give hugs or affection. It was kind of like I didn’t really know him at all, and witnessed nothing that made me want to.  And there isn’t a single thing he did afterwards in his life that proved that this instinct was wrong.

I did get trips to his new wife Phyllis’s house and to his new wife’s mother’s house.  She lived in a condo and had white, cottage cheese hair and I thought that she was one of the golden girls.  I also got to visit with my new step-siblings. They all had red hair. They were my step-siblings until he divorced their mom to too and then went on to marrying somebody else. Not too long after my Mom re-married, bio-dad kind of disappeared altogether, along with his child support payments. When I was 12, he made a deal to sign away his parental rights in exchange for not having to pay child support. My brother and I dressed up and sat down in the judge’s chambers. I recall shyly telling the judge that I wanted nothing more than for my step-dad-who-was-really-my-real- Dad to FINALLY be that way on paper.  My brother’s response was also yes, but his voice had the weight of reluctance. In the back of his brain, I think that was still holding on to that possibility that he would one day squeeze some love out of his “real” Dad.  And they did reconnect for a type of a love/hate co-dependent relationship once my brother became an adult.  At least until my bio-dad collapsed from a major heart attack one day after being dismissed from a health clinic.  I often wonder whether my big bro ever even got a sliver of what he was seeking. Que sera sera

So much of that history comes out in how I have raised my kids.  When people use the word “good Mom” or “best Mom” I always correct them. I am the okay-est Mom. What I don’t do is hover over homework assignments to make sure that they get every question right.  I also don’t volunteer at the school and make friends with all of their teachers and coaches in order to give them a “leg up.”  But I DO try to be the best Mom when it comes to the things that they really need. And what they really need is just two things: 1) someone who will be in their corner and show them that they are loved unconditionally, and 2) someone who will take interest in the people that they are becoming, trying to steer them into the best version of those crazy, creative, unique selves that they can be.

Okay, back to Grandma.  Que sera sera.

Grandma was a Catholic and attended a large congregation and gave her ten percent every week even though she and Grandpa lived solely off of a military retirement and social security. On her death bed, her only request was to see a priest to confess. It took her three calls to the priest at her church to finally get him to bother to go there and spend a few moments with her before she passed.

Whatever will be, will be

Grandma believed in fate and God’s will. When I grew up I believed that I would be in control of my life, and it drove every motivation I had for two decades. And in the last 18 months of my life, I’ve had to re-learn that I am in control of almost nothing at all.

The future’s not ours to see…

With the Coronavirus just starting to hit, causing cancellations and disruptions of your life, it’s normal to feel some anxiety. We don’t know how bad it’s going to be, how long things are going to be cancelled or whether anyone we are close to in life are going to get sick or be affected. And the worst part is that so much of it is out of our control.  That spinning, uneasy feeling that you have is only sample bite of what I have lived with every day since the moment I knew that my cancer was metastatic.

I have never believed in “whatever will be will be,” because I witnessed others with that attitude around me growing up.  And it seemed to only lead to the belief that others would come along to save them.  And they never did.  So I adopted a different mantra:  “Whatever I work and fight for will be.”  This philosophy gave rise to several expectations:

I expected that because I had worked and planned to build a family and career that they would always be there for me.

 I expected that I would reach a certain level at work, watch my kids grow up, and then travel the world and enjoy my grandchildren in old age.  It’s because of those expectations that it hurt so very hard and so very long when all of those things were taken away from me with the words “incurable cancer.”  I grieved, and will probably never fully stop grieving that future that I expected despite the fact that it was never guaranteed.

I expected that I would get to live longer after diagnosis- possibly five years or longer. If I had only qualified for a full liver resection.  If they had only not found disease in my peritoneum.  If only my chemo had lasted longer before failing. If, if, if. I had to mourn each of those lost expectations in succession. With each onslaught of bad news, I grieved the loss of more time with my family.

What it took me so long to figure out is that all grief is caused by having expectations and then losing them. I believed, despite myself, that if I did “the right thing” that I would be rewarded.  I expected that my run of relative good fortune would continue, instead of taking a very sudden and dark turn (of course, I think that my intuition was trying to tell me something different, but I wasn’t listening). And with each lost expectation comes another wave of pain and grief.  So I’ve finally learned that the only way to stay mentally balanced through something like this is to just stop expecting anything at all.

So I’ve begun, bit by bit, to release all of my expectations.  A crucial step in doing this is to find peace and acceptance with the worst case scenario. For example, my worst case scenario right now is dying of Coronavirus in a hospital corridor (the last place that I would want to die), because they won’t have enough ventilators and I don’t have enough life years left to make the cut. That worst case scenario is most likely not going to happen, but it is possible, so I have to embrace it. This doesn’t mean that I stop trying to live longer or that I abandon my desire to die at home. It does mean that I have to release my expectations that whatever I try will succeed. The truth is that no matter what I do, I may die both sooner and less poetically than I would like to.  I have to accept that truth so that if it happens I don’t waste time mourning it before I die.

I can’t “expect” that this trial will work. It probably won’t.  I can’t expect that that this pandemic won’t be as bad as they say. It probably will. I have to accept that I won’t get to go out and do more of the things that I wanted to do while I am still healthy.  Nothing is ever guaranteed, and I don’t have enough time left to mourn another expectation lost.

Slowly, but surely, this re-framing is beginning to work.  Here is a hard truth- accepting the fact that I am powerlessness to fix bad things is the hardest thing that I’ve ever had to do in life. 

But I am doing it anyway, because it’s the only answer right now.  And I have to keep working at it- reminding myself daily. I can’t get tempted to lift the divider between effort and hope and acceptance. Those things must stay separate, if I am ever going to find that place of peace before I die.  That peace (mingled with sadness) that I am finally just now beginning to feel…

Whatever is going to happen over the next several weeks; with my health, with the virus, etc. is out of my control.  And I am finally becoming at peace with that.  With that acceptance comes the knowing that I can no longer put off tying all of those loose ends. Those things that must be done before I become too sick.

“Que sera, sera, whatever will be, will be. The future’s not ours to see. Que sera, sera.”

To Sleep, Perhaps to Dream…

Sleeping is giving in
No matter what the time is
Sleeping is giving in
So lift those heavy eyelids
People say that you’ll die faster than without water
But we know it’s just a lie
Scare your son, scare your daughter

People say that your dreams are the only things that save ya
Come on, baby, in our dreams
We can live our misbehavior

Every time you close your eyes (lies, lies)
Every time you close your eyes (lies, lies)

People try and hide the night underneath the covers
People try and hide the light underneath the covers

Arcade Fire “Rebellion (Lies)”

For the past month, I’ve been both sleeping and dreaming quite a bit. They are large dreams, epic dreams, the kind of dreams that you could write a movie script off of. In my sleep, they seem to last for hours. Then I am usually awakened out of them with a jolt, most often by my husband. For the next few moments, the dream, and sleep itself wants to pull me back in like I am trapped in an elaborate spider web that I can’t shake off despite enormous effort. Sometimes I try to explain it to my husband, but the dream falls off when I realize that the perfectly logical epic movie makes absolutely no sense when words begin to touch it. And then I get out of bed, covered in rubber cement, trying to rid myself of the dream and ease back into reality.

There are logical reasons why I am sleeping and dreaming so much lately, a big one, of course, being that I no longer have an alarm clock. Always a morning person, it was never difficult for me to jump out of bed with an alarm. That started to change when I stopped working. I always thought that I was one of those people who only needed 6 hours of sleep. But I slowly started sleeping longer. And it slowly stopped being so easy to get out of bed. But the most dramatic shift- the one that’s occurred in the past month- is a little harder to explain.

Another answer is that this is depression. It’s probably no coincidence that this started to happen about the same time about the same time that SOC chemo stopped working. Both the depression and longer sleep can explain the more vivid dreams. Sleeping in longer means that I am having more REM sleep than ever before, and therefore more likely to have long dreams and to wake up in the middle of them. If my mind is full of scary thoughts, is it any wonder that these would inevitably work their way into my dreams?

But what if, for a moment, I entertained the fact that there was something more? That my brain and body know something that my fully awake conscience has not yet grasped onto yet? I’ve mentioned in previous posts that through the path I’ve been down since diagnosis I’ve become a believer in my own intuition. What if these dreams are a part of that? What if my body and subconscious are trying to prepare me for something? I suppose that I don’t even need to write out loud what that thing is. A great change or transition ahead. Perhaps the final one…

All of these distractions. All of this technology. All of this busyness that we’ve all been lost in. All of this information. These things pull us away from listening. Listening to what our “gut” (as people like to call it) is trying to say. We wake up early so that we can be more productive. We lie to ourselves a lot. We hide the light under the covers. We hide the night under the covers.

I take a look back, and realize I’ve had a very good “gut,” or intuition about a lot of things and about a lot of people for a pretty good long while now. I just have been ignoring it. For example, I’ve always been very good at spotting somebody who is a fake or a phony- even when the rest of the world around me gets wrapped up in the facade. And I’ve seldom, if ever, been proven wrong. Once spotted, I begin to recognize patterns and can often anticipate or predict the actions and next words to come. I also often (though not always) have had the ability to step back and look at the entire context, or “big picture” of a person’s actions or motivations. Maybe it’s less intuition than it is the fact that I’ve spent a lot of time sitting back, observing human nature, and thinking.

Beware the quiet kid who moves and changes schools a lot. The one who has witnessed in more ways than one just how drastic the contrast between hidden reality and outward projection can be. Beware the kid who’s had a first row seat in the study of humanity.

But my gut, or intuition is still more than just the sum of what I’ve practiced and learned. For example, this morning I got my “on this day notification” from my journal entry two years ago. This was five months prior to my diagnosis:

March 11th 2018: “It seems that I am nearing a few peaks in my life… the end of my younger years, the end of my [long project at work]. Uncertainty about the after… things might end up okay, but the unknown is terrifying. [I have] Unprecedented mental sharpness [and] unprecedented anxiety. The [first] grey hair… The unknown behind the scenes. What the fuck does it all mean?…. Does this path lead to peace and happiness? Does this path lead to an early death? An early death is something that I have feared for a while… Is this process about learning to be happy? [Or] Is a health event pending?”

My intuition was SCREAMING at me that something was wrong. I even journaled about it. And I was SO distracted by stress at work, I was SO obsessed with ruminations on how to fix things that I IGNORED IT. I thought that I could just wait and bear through what I deemed (and people at work deemed) to be an immediate crisis- an immediate crisis that was in reality anything but. The real crisis was brewing underneath. I felt it. But ultimately I cared more about the work “crisis” and pleasing people who literally couldn’t care less about me than I did about my own health and taking care of myself to meet the needs of my own family. My family. You know, the ones who did care about me? I was visibly on the verge of emotionally falling apart. I’d make frequent trips to the hallway or bathroom and come back with red, leaky eyes from completely breaking down. And aside from the two people on my functional work team that had been through the project with me (and who had therefore dealt with the same struggles; fighting to be listened to and getting shut down) nobody gave a damn. My lack of power to bring up existing problems had resulted in many many months of delay, and suddenly NOW it was all about the mission. The people getting thrown under the bus to execute that mission were nothing but collateral damage.

Five months might have made a difference in my longevity and survival. Or it might not have. But I will never know for sure, because I was too busy reacting, and not busy enough listening.

I’m listening now. And in those silent moments? I feel tired. I feel sad. And more and more often? I’m beginning to feel some kind of peace with the inevitable. I think that my body and my subconscious are trying to tell me that I am now on the final lap. And in fact, I am. I have stopped SOC chemo. I just got accepted into a clinical trial. I have entered the wild west. I hope, hope, hope, for good results on this trial. I am grateful for being accepted into it. But I know… I know now how powerless and human I am. I know that I cannot bend the will of fate. I know that this time I have now, where I still feel healthy, is now fleeting and that I need to cherish it, and I know that darker days are likely on their way.

I’m trying. I’m doing the next best thing to keep me here. I want to stay. I am full of hope. But I am also listening. I am welcoming the love and peace around me. I am finding the joy in every moment that brings it. I am being present with my sadness and letting myself cry. Because making peace with my sadness will get me closer to acceptance. I am sleeping. I am dreaming. I am listening.