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 the 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 tumors. 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.

And so 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. Well, this morning I finally broke down and called my oncologist’s nurse for her to check on it. A half hour later I get the call. “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 I will wait 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 the 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 had 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 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 can possibly take when this flight ends. What comes next is either 3rd line treatment designed to only slow growth (not shrink it) in hopes of prolonging the inevitable a little longer. Or a 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 Opdivo to the 3rd line treatment (Stivarga) that I would be moving to anyway, but 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 getting 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- if I qualify- potentially weeks away at the NIH in MD for something which might work?

I was initially favoring option 1. Unfortunately, however, the online Colontown Facebook groups are tracking US members currently taking this combo either through a trial and off label. The results so far (after a couple of months)? 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 Oncologists) conference. Now I am wondering whether taking a shot 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 it is dying. Is that worth waiting for? I cannot say the same. At least not yet. I am selfish and would rather “wait for” the chance to see my children grow up. I would rather grow old with my husband. However, the closer I get to that point, the more 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 uncertainty, I can face it with the same courage and bravery.

Deal with It

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2020

So this is the New Year

And I have no resolutions

For self-assigned penance

For problems with easy solutions

Death Cab for Cutie, “The New Year”

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

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

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

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

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

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

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

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

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

And so on to 2020…

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

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

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

2) Be present with the people who matter.

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

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

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

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

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

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

5) Don’t wait.

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

6) Take care of yourself.

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

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

7) Live your life with the ending in mind.

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

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

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

The Last Time

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

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

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

Frank Turner, “Polaroid Picture”

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

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

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

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

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

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

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

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

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

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

Back to the Future

You were right about the end

It didn’t make a difference

And everything I can remember

I remember wrong

How can anybody know how they got to be this way?

You must have known I’d do this someday

Break my arms around the one I love and be forgiven by the time my lover comes

Break my arms around my love.

The National, “Daughters of the Soho Riots”

About a year or so before I started this blog, I began journaling. I journaled as a way to express myself and to help work through what I would have then probably called a mid-life crisis. I was both frustrated and stagnated- especially at work. I had the experience and the motivation to succeed. But I didn’t have the respect or support that I needed to do it.

Unable to control things in that environment, I hoped to at least make sense of it internally with words. During one of these entries, I decided to try one of those writing exercises designed to give perspective. The goal is to write about how you see yourself 5 years in the future, as a way to highlight that whatever you are currently struggling with will someday be in the past. Every struggle is temporary and can be resolved with time. Or so I thought.

So of course this past week, my online journal system decided to send me one of those “on this day” reminders of this particular post that I wrote two years ago, envisioning myself 5 years in the future (or I guess what would now be three years from today).

I won’t lie. Just seeing the title and remembering the subject matter of the entry was cruel. Statistically, I am far more likely to not be alive than to still be here three years from now. And now here you are sending me my prior aspirations?

In preparing to read it, I braced myself for sadness, and found it. But I also discovered a few other things along the way. So here we go…

Five years from now, I will be on the verge of 45. I will have more grey in my hair. I will be most likely coloring it auburn. Let me go grey when I am 50 🙂

Of course I didn’t know then that chemo would interlude and cause my hair to first thin out and then attempt to grow back in grey. But I guess that I shouldn’t complain too much on this front. I was “supposed” to have all or most my hair all fall out on this most recent line of chemo and after 7 rounds it didn’t! Just more thinning.

Now, with my two months off of chemo for surgery, it is attempting to fill back in with short little hairs growing in everywhere. They shouldn’t get far, as the chemicals will be returning next week. However; if upon return to chemo, my hair remains mostly in tact, I may take the leap and color it auburn anyway. Just because I have been surgically forced full-swing into early menopause doesn’t mean that I have to go grey. Perhaps not going bald is the one positive thing I can hold onto and make the best of…

Five years from now, I will be a (insert name of promotion title here). I will feel confident and comfortable with my work, and with my work/life balance. My husband and I will be making the illusory (insert anticipated annual income here) per year. In my work life, I will feel free to be myself. Intelligent, witty, me.

I wanted that deserved promotion. The money was just a bonus. Even more than that, though, I wanted to find fulfilment in the work that I was doing. I didn’t just want to lead a project and team. I wanted to be able to be my authentic self while doing it. And finally to have the peace of mind to leave it behind when I left for the day.

I think that if this hadn’t happened I may have gotten there. But none of that matters any more, I guess. A terminal illness put all of my worry and stress over work into perspective very quickly. I wish that I didn’t have to take something so drastic for that to happen. I still want to contribute though. This blog has turned into a small way that I can do that, even if it wasn’t what I set out to do when I started it. If I am blessed with the gift of more time, I hope that I still continue to find ways to do this. Just no longer in the context of a formal work environment.

In my personal life, hopefully, I will have finished the journal of my life. If not that, perhaps I will have a blog. Or both? I will be unafraid to show people my authentic self. Or to have my voice heard.

Talk about predictions that were accelerated by my diagnosis! A written narrative/memoir about my life/and or a blog was always something that I’ve wanted to do, but had a million excuses not to. Being told that I have limited time forced me into beginning this blog as public therapy. In addition to the blog, I’m still considering writing a more formal memoir. The challenge is that I don’t want the writing to take over for the living that I want to do in my last months to years here. Hopefully moving forward I can figure out that balance.

I will still be meditating every day. I really hope that that will be true in 5 years, because it has given me a “religion” of sorts. I have needed a spiritual side for a very long time. I need that quiet, I need that prayer. Hopefully, I will have made progress in my meditation to cut out all of the noise. Hopefully, my daily quiet will have continue to bled out into my daily life.

Two years ago, I thought that meditation was going to be my path towards gaining the spiritual side that I’ve always been missing. I was so very wrong. Through the shock of everything that has happened to me, what happened instead was that I quit meditating pretty much altogether.

Meditation was an artificial construct that I hoped would give me clarity. Learning that my life span would be a few decades shorter than anticipated turned out to be clarity enough.

I now find that “spirituality” comes to me every day; not in some sacred quiet space, but rather in the thick of life itself. Despite not adhering to any formal religion, I believe that I actually see God now on a pretty regular basis. And that God? It’s not a person at all. It’s just love. It’s the feeling of an embrace. It’s in snuggles and hugs. It’s in having meaningful conversations with those that are close to me. It’s in laughter and play. God is in the joy and the sadness. And God is in anything honest and true.

In Five years, I want to love myself more. And I want to be more compassionate toward others. Not just understanding. I want to be compassionate. I want to have a glow from the inside and I want to share that glow with others.

Do I love myself now? Yes, I think that mostly I do. I am more accepting of my flaws. I am fully aware that I am not and have never been perfect. My “failings” have usually come in the form of self-protection in the face of fear. But I give myself credit for at least trying to be aware of myself and to continuously improve. And this drive is of course moving now faster than ever.

Compassion and understanding has been more of a mixed bag. I have grown in some ways, but stalled in others. I definitely have an appreciation for the fact that we all start at different places and have had different challenges. But I also have to admit that in other ways I have lost some compassion. Mostly toward those that do not seek to improve or solve their problems. Or those that give up and let the little things sink them.

I realize that this comes, in large part, not just from my background, but also from my own injured internal locus. I don’t get a hypothetical tomorrow where I can fix my diagnosis and move on to the second half of my life. Since I have been barred from “solving” my own diagnosis, I can’t help but resent those who can but still don’t. This may not be the “right” thing to feel, but it’s just where I am right now.

In Five years, if politics bears out, we will still be living here, but our home will be remodeled. Our youngest will be twelve and we might start to get nice things. Abe and I will have gone to Hawaii.

Before I got sick, we took the leap and remodeled the bathroom, but now the kitchen remodel is on the permanent back burner. This basically just comes down to decisions that we have made as to what we so and don’t want to spend our money on during the time I have left.

Due to term life insurance policies we both purchased when we were younger and healthier, my family will (thankfully) be financially taken care of after I am gone. This also gives me some freedom to withdraw from my own accrued retirement account, when needed. I saved it for a retirement in old age that I now no longer get. This is it.

We took the trip to Hawaii, no regrets. For Christmas? We are going to Florida and staying at a family resort. I can’t wait to see them play, make friends and to have fun as a family. Experiences are the “stuff” of what life is all about. Experiences are what I want to spend my money on.

In Five years, my Audrey will 17 and a Junior in high school. We will be making plans for college. She will be confident, and clever and she will have a way with words. I will have shown her that it is worth fighting for what she believes in. She will have picked at least one (most likely two) areas that she is really shining in: Art, Writing, Journalism, Poetry, Speech/Debate, Acting or Theatre Crew, Destination Imagination, and/or Junior Optimist/volunteering/helping others.

My oldest daughter traded Destination Imagination for Speech and Debate this year and has really flourished. She is 14 now, and I can see that she is already confident, and already has a way with words. She also has a wealth of creativity and artistic talent. How lucky would I be as a Mom to get the chance to see her continue to grow and flourish throughout high school!

This one is already taller than I am, and of the three kids is the most like me. She has no problem standing up for what she believes, and as she grows up, she will have to learn that that often comes with a cost. I don’t get to see her as an adult. But I do get to see the remarkable young lady that she is right now. And that is something.

In Five years, my Lucy will be 15 and she will be a force to be reckoned with. She will be dancing and maybe acting, and making others laugh. She will be a freshman in high school.

In less than two weeks, my Lucy will turn 12 and she is also, of course, already a force to be reckoned with. She has a smile and a voice that can light up any room that she enters, and a talent for making anyone feel included. I was lucky enough to see her begin middle school this year, and she is wading through the new academic challenges that come along with it. She knows the material, but lacks the confidence to work through it independently. I would love to be able to see her become as comfortable and confident in herself academically as she has always been with herself in other areas.

In Five years, my Jack will 13, and filled with teenage awkwardness. Hopefully, I will still be able to get a hug out of him every now and then. Hopefully he will get a chance to show the world how smart and quirky he is underneath all of the other “stuff”. He will be in 7th grade and hopefully far above that level in Math and Science. He will hopefully find teachers who bring out the best in him and have encouraged him to try out things Science Olympiad, and Math Competitions.

At nine and a half, Jack has progressed so much but still struggles in some areas. He has the unfortunate combination of being gifted with ADHD and it can be so hard for teachers to see the smart and quirky beneath the impulse control issues and nervous habits like chewing up his shirt. He’s in fourth grade now, but I worry for him in a future middle school environment that seems more focused on punishing kids than growing them. As a result, we have seriously considered moving him into a charter school with more of a STEM focus during these years. I just want him to be able to be able to finally use and be seen more for his strengths than for his weaknesses. I worry a lot about leaving him too soon and not being there to help remind him how much I love him. No matter how old he gets I’m still a sucker for those hugs.

Yes, there is much to be grateful for. My husband has a big heart. My children are always making me laugh and amazing me. I am blessed.

I knew two years ago how lucky I was with my husband and kids. Never in my wildest dreams, did I imagine when I wrote these “five year” predictions that I would not be here to see them. Now more than ever, I notice how often people just take those things for granted. Perhaps I will beat the odds and in three years from now I will still be here. But I know that most likely I will not, so I am left with making peace with the fact that all of that is outside of my control.

I expected there to be all pain in reading what I had written. But I found alongside it a lot of gratitude. Gratitude for the ways that I have grown since my diagnoses, and gratitude for all of the things that I have right now. On a personal and spiritual level, my growth in many areas has been forced to accelerate. And on a parental/familial level, I am still able to find love for the things I have now comingled with the sadness of having to miss out on the future.

I am still able to witness the amazing people my children are now; and am afforded the confidence to know that my husband will continue to guide them when I am gone in the same way that we both would have done with me still here. That’s not something that everyone else in my position can say. And so it all comes back to love, now and forever, while I am able to still be here and beyond.

This is How It Works

This is how it works
You’re young until you’re not
You love until you don’t
You try until you can’t
You laugh until you cry
You cry until you laugh
And everyone must breathe
Until their dying breath
No, this is how it works
You peer inside yourself
You take the things you like
And try to love the things you took
And then you take that love you made
And stick it into some
Someone else’s heart
Pumping someone else’s blood
And walking arm in arm
You hope it don’t get harmed
But even if it does
You’ll just do it all again
And on the radio
You hear November Rain
That solo’s awful long
But it’s a good refrain

Regina Spektor, “On the Radio”

You may have gathered that the last two weeks or so have had some darker days. Physically and psychologically, the post-surgery period is not one that I have been able to handle very well.

It begins in a hospital, and I hate hospitals. The apparatus, the tubes, the monitors, the frequent interruptions, the gowns, the inability to move freely or even fully accomplish hygiene and self-care. I am put in my place quickly. I am not a person, but a patient.

It manifests itself in the eyes of the 20-something resperatory technician sitting at the bottom of my bed. She stares smugly at me as her senior lectures me and I try helplessly to communicate my concerns with a breathing tube down my neck and nothing other than a pen and a piece of paper with no space left.

I will remember that smug look forever. This girl with no health issues and her entire future ahead of her, looking down on me as I attempt to advocate for my quality of life. I don’t look like an intelligent human to her; just some crazy older lady that needs to stop trying to communicate and let the better people in the white coats do what they want to do. She does not yet know how little she knows about the full spectrum and complexities of life that lie ahead of her.

After the hospital, I get to go home. The pain is still there, but the pain management system is not what it was. And then I realize that I get to deal with not just the pain. I also get to plunge headfirst into an estrogen-free existence. The hormones driving my body systems for 30 years are gone now. Just like that. No gradual transition. I get to jump on the fast-track to old-ladyhood lest I miss that phase on my way out the door.

Finally, two days after leaving the hospital, my stitching breaks open. A visit to an ER and back to the surgeon nets a solution that has your software engineer husband learning how to be a nurse.

How could we ever have imagined, at 42 and 41 that this would have been our lives?

All of this is no good for the brain. It starts wandering off to it’s favorite dark places. As I am being cared for by my husband, I begin to draw parallels to my future home hospice care. In my own room, but in a hospital bed. Will he have to bathe me? Change my clothes? The vast unfairness of it all begins to hit.

And what about the pain? If they can’t give me anything to meaningfully help with the hormonal changes or do more than simply dull the pain, how can I trust that they will be able to do so at the end? When I am possibly delerious and am unable to advocate for my own needs?

My last post had me in the thick of all of this. And rather than being fake, or avoiding writing, I decided to just let it all go. I know that it came across as whining, and I don’t care.

Part of my goal with this blog is to show the truth of the heart and brain’s experience with terminal cancer. My last post was part of that truth.

Here’s another truth. This week was a little better. My wound is not healed, but it’s slightly better. My pain hasn’t gone away, but it’s slightly duller. My hormone crash hasn’t gone away, but I’ve developed work arounds to make it slightly more bearable.

And this is how it works. Things are always changing. Right now they are changing- very slowly- in the direction of getting better. And someday, either a very long time or a very short time in the future they will do the opposite.

And this is how it works. It isn’t very fair. But you take the things that you have and you love and you use them to lift you out of the dark places and to stop you from dwelling in them. Experience and acknowledge the pain, but don’t grant them free reign to kick out or negate the good and joyful things that you do have.

And this is how it works. You take the things you get, and you try to spin them into the best life you can. You take the opportunity to grow and make your best effort. Not to be somebody else, but to be the best version of yourself that you can manage.

And this is how it works. Life will have other plans. It will give you challenges that you didn’t ask for. And it will be very hard to see the advantages you’ve had that you’ve always taken for granted. You take these challenges and you learn to either conquer them or manage to live with them. You just can’t let them run you over and flatten you. You can’t let them kill you without a fight.

And on the radio, you hear November Rain
That solo’s awful long, but it’s a good refrain

Mornings

Clean out your mouth this is not what it’s for
There’s still a bloodstain from the spill of the war
Pick up your sorrow this is not who we are
I won’t cry uncle having come so far

It’s alright, it’s alright
It’s just blood under the bridge
I’m too tired to fight
The affliction will be fixed
It’s alright, it’s alright
It’s just blood under the bridge
Put down the knife
And watch the blood under the bridge go by

So tie your ragged fuck ups in a neat little knot
And put it on the shelf behind the picture we bought
I’ve found a way to make the best of a flaw
And realize it’s not the end it’s an uncomfortable pause

Frightened Rabbit, “Blood Under the Bridge”

I have always been a morning person. I used to be one of those kids who was out of bed with the first alarm’s bell and into the shower. Nothing beats a morning shower. To wash all of the grime, dirt, and other tiny disasters that inevitably “muddied up” the day before. Mornings meant a restart. There was always a restart. It was either the next day, or the next school year, or the next move and cleansing of my identity. Another chance to be the new kid. There was always, always a fresh start of some kind. Until one day there wasn’t. One day I woke up and there was no escape.

I wrote before that I am becoming less bitter. About senior citizens complaining about ailments. About people with solvable problems who refuse to solve them; instead passively relying on the seeming foreverness of their future lives to come pull them out of their hole of self-created misery.

Oh yes, my friends, I am less bitter. But I am still far, far away from sweet.

I see so many people who are blatantly obese, ordering terrible things, living unhealthy lifestyles. And here I am- dying of fucking colon cancer. Because I didn’t eat enough vegetables as a kid? Because we picked up fast food too often as a family because it was convenient? I hear the bell and the chant, “SHAME. SHAME. SHAME.” I, and apparently tens of millions of other busy, middle aged working moms who aren’t dying of colon cancer right now deserve this.

There is no way to wash this off in the morning. It stays there now forever like a scarlet letter for the remainder of the time I have left.

I was always a morning person. And then I got cancer. And then I stopped working. Now I can’t seem to even get myself out of bed.

Surgery is one of those things that promises itself to you as a new start. If so, it is the most barbaric pathway to a new start I can think of. I am grateful for surgery, I WANT surgery because it relieves me from that ticking time clock that is the rapidly growing tumor in my abdomen. It relieves me, in the long term, from the consistent pain in my abdomen that has been growing for months.

But first, my friends, it must tear up and wreak havoc on everything helplessly surrounding the problem. If my torso is a metro map keeping my system healthy and running, I can tell you that right now it is full of warning signs in primary colors.

The signs warn of gridlock and construction everywhere. And the worst part is that the chief engineer isn’t even 100% sure yet that he actually gutted all of the bad stuff. Meanwhile, the hormone highway just put up a “closed forever” sign, leaving several stranded, confused, and angry travelers shouting and firing off in all directions.

For housekeeping purposes, here is my latest update: I am now 10 days post-surgery. They believe that they took out all of the mass, along with my right ovary. They pulled that all out and say that “it’s possible” that my left ovary came out with it, but probably not. They didn’t pursue further because my blood pressure kept dropping to the point that they had to give me two units of blood during surgery, and three additional units over the next 3 days post-surgery. So they sewed me up and stopped. I got to wake up with a breathing and NG tube and a set of wrist restraints to prevent me from pulling them out. If a person gaining consciousness’s first instinct is to yank them out, I will let your imagination decide for yourself what these felt like.

I will throw this experience in on growing pile in the corner of moments that I am collecting with this disease that literally have made me feel sub-human. I was not only not able to speak, but told that my attempts to write were interfering with a line in my right arm and told to stop. I did get at least the breathing tube out later that morning and then after 5-6 days in the hospital I made it home. A part of my incision wound broke open the day after dismissal and now requires my husband to pack and bandage it daily with hope that it will heal. Because of course it did.

I used to love mornings. I don’t love mornings any more. Sometime in the evening before, I will have sweated through my clothing and woken up wet. Sometime in the evening, my sheets got wet. Sometime in the evening I curled up into a cold, defensive sleep position that put all of the pressure on my hip and now my hip hurts. Sometime in the evening, my on-again, off again peripheral nueropothy woke up after my cold, clammy, hand emerges from being wrapped up in a wet, sweaty hoody all night. Or maybe the open wound that my husband is still packing after surgery came open and there is blood all over my underwear? Or maybe the supports for my wound shifted accidentally and put pressure on my ostomy bag causing that to break open as well?

I used to love mornings. I don’t love mornings any more. When I wake up in the morning now, my first thought is usually about pain or discomfort of some sort. My second thoughts are usually about cancer, and all that it, and multiple operations, have wrecked upon my body to keep it alive.

So maybe I don’t love mornings. Mornings are now the mud puddle that I must slosh through before deciding whether to step up and re-enter life. Even if it doesn’t get to be the perfect clean that it used to be. Even if I don’t get there until the afternoon. Something different has emerged. It is the haggard sort of clean that finally comes to a warrior after battle, who has somehow made it through and now boldly decides to enter into another day.

I will never again be as clean as I used to, but I am here. I will never be as young or free of pain, but things still get better, until of course again some day they won’t. The wounds from surgery will heal and the associqted pains from surgery will go down.

They will scan my body and then tell me again (hopefully) that I am better off now than before I went under. I will start to feel better and get back to chemo and hope, hope, hope that it is still working for me because I’m not ready to fade away and die just yet. I’m not yet ready to stop getting out of bed. Even if I feel older now than I think that I ever have before.