By the waters of the Thames

I resolve to start again

To wash my feet and cleanse my sins

To lose my cobwebs on the wind

To fix the parts of me that broke

To speak out loud the things I know

I haven’t been myself…

Frank Turner, “The Angel Islington”

Half of a year. Half of a year has gone by since I sat down to write out my resolutions for what could be the last full year of my life. Of course, most resolutions are meant to be broken. So how have I fared in my endeavours?

Body:

1. Eat more fruits and vegetables
2. Eat more nuts
3. Walk, do yoga or some other form of exercise every day.
4. Get better about staying hydrated
5. Try to get on a more consistent sleep schedule

Okay, so all of these things were a tall order, but I was doing them pretty well up until March/April. I was walking an hour a day, and morning yoga most days. I was eating more fruit, vegetables and nuts.

And then surgery changed pretty much ALL of that. The rest of my colon (large intestine) was removed, and my colostomy changed into an illeostomy. More adjustments for my body. I was told to eat like a 5-year-old; no fiber for 6-8 weeks and then slowly start adding back in. I had trouble eating at all for a good part of that time frame, and am still just slowly adding back in. Oh, and since my colon was responsible for absorbing most of the fluid from my foods, I need to stay hydrated at all times and am drinking G2 Gatorade drinks, which is basically sugar water with electrolytes. Hooray for healthy eating!

As for exercise, I have worked myself back up to a 30-minute walk on most days. I haven’t started back on yoga, first because of back issues and then just having trouble getting out of bed for it. My sleep schedule also got way out of whack after surgery as I could not sleep many nights and started day napping. I am working my way back slowly to all of these resolutions, because I think that they are good ones.

6. Come up with a system to track symptoms. Good idea, but I am dragging my heels on this for some reason.

7. Advocate and be proactive with doctors and research medical options.

I can say with certainty that I never would have had that surgery had I not been informed and proactive. I can also say with certainty that I didn’t go far enough.

I should have insisted on seeing all three surgeons again after the month delay in my surgery, and not just the liver surgeon leading the team. If I had, I could have pointed out my ovarian cyst and double-checked that the surgeon covering that part was going to check to see if it looked suspicious when he had me open. Since I didn’t, we hadn’t spoken since 2.5 month prior to the actual surgery. Instead I stepped back and told myself that surgeons at the Cleveland Clinic are highly skilled and respected and that I could trust that everything would be checked and taken care of. I was wrong.

Lesson learned? Never dial back on advocacy. If you want individualized care as a cancer patient, you have to be your OWN doctor.

Otherwise, it will be rushed physicians who apply a plug-and-play approach, because they need to wrap up your appointment and get to the next. Even on the smaller things. Like adding a new standard of care drug to my chemo regimen. “Yes we can add that when it’s been two months after surgery.” My surgery was April 10th, but my last two appointments have been with the nurse practitioner who is either too nervous to get the doctor to sign orders for it or forgot altogether. I will be finally getting it at my next treatment. A full THREE months post surgery.

Mind/Soul:

1. Feel, then let go of my negative emotions.
2. Meditate every day
3. Journal every day.
4. Hug the people I love every day.
5. Spend more time with friends.
6. Have deep conversations, and say how I really feel.
7. Spend more time outdoors and get out into nature as much as possible.
8. Travel.
9. Go to concerts.
10. Play (at anything), laugh and have fun.

I think that I have been doing much better with these resolutions, with a couple of exceptions:

• I haven’t done much traveling yet, but these things have to be well-planned between surgery recovery and chemo. I plan to make this up during the second half of the year. This includes an all-girl road trip with friends (something that I would have never stepped out of my comfort zone to do in my “pre-diagnosis” life), and weekend trips visiting family and friends. These will help me to fulfil resolutions 4,5,6,7, 8 and 10 all at once!
• I missed out on a couple of concerts that I would have loved to go to, but was too sick to do so. I didn’t buy tickets to that Frank Turner show in Cleveland. We stayed home during the FOALS concert we had tickets for because I was sick. And while not technically this calendar year, we also had to skip out on purchased tickets to see the Decemberists last fall because I was still only about a week out of the hospital from my first surgery in September. But I’m making a comeback! We were able to see Vampire Weekend and the National in recent weeks, and I have a couple more that I am hoping to make it to before the end of the year.
• After my diagnosis I stopped meditating every day. After my postponed surgery on March 8th and everything thereafter, I stopped altogether. I’ve tried to get back into it, but still only convince myself to do it 1-2 times per week. I’ve thought a lot about why this is the case, and I think that it comes down to the app I am using and it’s daily themed messages:
• • Nothing is permanent. Your pain isn’t permanent. The voice echoes over, soft and friendly, but all I can think is, “actually lady, my research tells me that from a physical perspective, it is likely that today will always be the best day I get to have. Seems pretty permanent to me. So does dying.”
  • You can’t control the waves, but you can learn to surf! Okay, I get this. It is better to find a way to ride with the suck than to constantly struggle with it and get pulled under. But the examples that they use in the lesson? They all seem so small and fixable to me by comparison.

I am working on my own way to ride these waves that seem so determined on either pulling me under or crashing me onto my final shore about 4 decades sooner than I expected.

Call it a new-found bitterness, but I just can’t abide any lessons on how to best handle this type of adversity from anyone who hasn’t stood in my shoes. Who hasn’t had doctors tell them bluntly that there is no hope for a cure. That no matter what they do, that the peritoneal disease will always come back. Until you’ve been forced to face something like that, you have no idea how you would really handle it.

So I guess that’s why I stopped meditating. I am struggling with one-liner solutions to a very dark, complicated and permanent problem. It occurs to me how very privileged it is at all to be able to solve a problem. To fix it or walk away. Or to change your mindset and wait for the difficult situation to pass.

If you woke up this morning assuming that you will still be here in five years, you are privileged. Of course, that’s something that I never fully realized myself until I suddenly had that privilege taken away. Whatever problem you are facing, you still have time to solve it and find a door to greater happiness that will carry you for the rest of your life. Don’t squander that or ever take it for granted.

I wish that I had a time machine and could go back to 3-4 years ago when I was trying to take a leadership role on a new work project in an environment that would only grow more toxic.

I wish that I could tell myself to not let my identity and mental space get sucker-punched and consumed by trying to find my place on a team that refused to let me. I needed to let go of the mental anguish this caused and focus more on the good things in the rest of my life. I should have been focusing on the people that loved and cared about me; not on a culture that shut me out and rewarded grown men for (on separate occasions) yelling at me, using derogative language, talking over me every time I tried to speak and outright calling me names.

My own boss, two levels up, was among those responsible. He limited my communications with my project team so restrictively that I couldn’t do my job effectively and was set up for failure. It went something like this:

• My counterpart loses his umm, marbles, yells at me and instructs the rest of the team not to listen to me.
• Boss’s response:  I shouldn’t have disagreed with my counterpart within earshot of the other team members because it put him on the defensive.
• Solution: Set up weekly one-on-ones so that I can express concerns or disagreements without other team members hearing.
• During the weekly one-on-one my counterpart tells me that “He doesn’t give a rat’s ass what I think.”
• Solution: Agreement that this was inappropriate. My counterpart and boss agree that there should be no more one-on-ones (with the implied undertone that since there were only two people in the room and no witnesses, that I was lying).
• I ask why a schedule date changed in the schedule meeting, inviting ire and retaliation because there isn’t a good response.
• Boss’s response:  I shouldn’t question or disagree with a date in front of my counterpart’s supervisor, who attends all schedule meetings.
• (My) solution: I stop going to schedule meetings because if I am not allowed to provide input my silence becomes implied agreement/acceptance.
• I request an expectations meeting with both levels above me to gain understanding of how I can and should communicate with my team.
• Boss’s response: “I think that an effective approach for you to ask questions might be to play the role of the dumb blond.”

See a pattern here?  The message was verbalized to my thusly: “Let the Team Manage Their Own Program.” Read: shut up and color, smile and nod, and dumb yourself down. The problem with this is that when everything goes south, the accountability still falls to me.  There was literally no path to what could be determined success by the expectations given to me.

This led to living two to three years of my life with daily chronic stress. Is it any wonder that I blew off my symptoms, once they started, as stress? Studies are now showing that stress can significantly alter your gut bacteria, which can then lead to a whole host of medical problems. I do believe that chronic stress was a factor in my cancer development and/or the speed of it’s growth.

But I also know that it’s more than just that.  The human part of me wants to find a single cause to affix blame.  It’s easier than accepting that all of this happened because of a combination of factors.  I should have taken better care of myself.  I should have listened more to my body during this time.  And I also have to realize that one of the reasons this happened to me was just horribly bad luck.  Tell me, how do you accept that for an answer?

A post-surgical colonoscopy found absolutely nothing else suspicious, which means that a SINGLE cancerous polyp, left undiscovered, continued to grow and spread. And by the time I finally found my way to an emergency room it was too late.

And for what? Absolutely nothing. The work project eventually finished, and, as should have been expected, I never pleased the people I was never going to please. I couldn’t escape the project, because the reality is that nobody else wanted to touch it with a ten foot pole. But I do wish that I had found a way to invest less mental space toward an unfixable, but ultimately impermanent situation. I should have spent more time with the people who loved me and sucked up that joy with every fiber I could instead.

That aside, going back to my original point before I stepped on my soap box, I think that the best approach for me is to go back to meditating, but use a silent one instead.  I need my own mantra for figuring out how to make peace with all of this.

Family/Legacy:

1. Make special time with each of my kids

2. Make special time with my husband

3. Leave a record of who you are (blog, letters, etc.)

4. Tell people that you love them.

5. Find ways to show others that you care

6. Mentor and assist others (at work, or elsewhere)

7. Find ways to give back

8. Prepare for the ending.

I think that I am doing pretty good with most of the above. I need to work on growing 5 and 7, and I need to do more with #8. Because let’s face it. That’s the hardest and scariest one and I think that I am putting most of it off (final arrangements, writing my obituary, letters to my husband and kids) until we finally get the scary news that signals we are reaching the final lap.

I am not currently working, and probably will never go back to my career. This was not easy for me to do. I had been in a new office and environment for only 6 months and it was like a breath of fresh air with good people, good culture and good leadership. I had only been there a month when I ended up in the ER and got admitted to the hospital where I received my diagnosis. And then came all of the time off for surgery at a crucial time of year, then chemo. For a while, I pushed through for the mental distraction and because of my pride in my job. But ultimately, between my frequent time off of work and all of the underlying mental and physical issues I was not fully able to not give them the support and time they both needed and deserved.

Between appointments, treatments, scans, surgeries, and time for researching trials and treatment options, cancer has become nearly a full time job in itself and I need to focus on that right now. Still, this wasn’t easy. I had a 19-year career. I always had a good answer to the question “what do you do for a living?” I’m not sure what to say now. Do I mention the career that I may never return to? Or say, “I used to…?” Or something else?

Oddly, the more I develop this blog, the more I realize that it is also fulfilling, to some extent, resolutions 3 and 7. I have some readers from the blog posts published on “The Mighty,” some from my cancer support groups, some from my indie rock groups, a few from the WordPress reader app and of course friends and family.

It started out as just wanting to tell the story of my journey and how it has effected me. Filters off. Some posts will be angry. Some will be sad. Some will be hopeful or any combination thereof. All of my posts will be real.

It’s becoming more than that. The world needs more people who can tell the whole story of their experiences. When we whitewash the ugliest parts of going through the process of receiving an advanced cancer diagnosis, when we put on a face and try to play the part of the inspirational cancer survivor we deny the full truth of what it is like to find out that you 1) have the disease, and that 2) it is extremely likely to kill you. This needs to be told not just to those going through this right now, but also to others who have never been close to it all.

I have heard from fellow mothers of young children and late-stage cancer, “Thank you for articulating that. You’ve captured exactly how this feels.” I hope that some with new diagnoses can get from this that it is okay to talk about being angry and sad and to not just play a part to please others. I have also heard back from several healthy people that I have never even met that they read regularly and are following my journey. I hope that my blog has provided them more insight into this experience, and I hope that it inspires them to live their life more fully, to not wait to be happy, and to either find solutions to or walk away from toxic stressors that are dangers to their mental and physical health.

If public therapy through prose ends up being a niche skill that I can use to give back in some way, then I hope I am fulfilling my resolution. I am thinking about even more ways to do more than that, but find myself cautiously waiting again. This time, the wait is for the next set of scans to tell me whether I’m taking a slightly longer road and milking my current regimen longer or the shorter one that leads me to the second of only two non end-of-line standard of care treatment options I am eligible for.

In the meantime, I’m just telling my story through this blog and giving where I can to a few causes. It occurs to me that I have a lot of nice work clothes that are just camping out in my closet unused right now. I want to donate a chunk of it to local tornado victims. I know I should, but I still find myself hesitating. All of those clothes are part of an identity that was integral to my life for so long. Getting rid of them is just another step toward admitting the finality of everything I am going through. It’s a difficult pill to swallow.

Identity aside, I realize that I’ve been able put more of my authentic self into this blog and into raising my children than I was ever able to always do in my career. And it won’t be my career that I am thinking about on my death bed.

I came across a video of a speech this morning on my colon-town groups that aligns fairly closely to my experience so far with this disease. It breaks you. In so many ways. In so many false hopes and scans. You can cry. You can be angry. You have to feel the emotions, not bury them. But no matter what, you can’t give up. You have to keep fighting, you have to keep advocating.

I have to keep going for as long as I can and use what has been broken in me to shine a light and help others. While the analogy he uses might have also seemed trite to me in another context, it takes on a whole new meaning when it’s coming from someone who I know,-like me- has spent some time staring into the abyss of this new reality.

If you have 18 minutes to spare (or part of it), here it is.

If you don’t, the following song lyrics from my favorite band mirror the end-point quite nicely:

And you know when it’s all gone/ Something carries on

And it’s not morbid at all

Just that nature’s had enough of you

When my blood stops/ someone else’s will have not

When my head rolls off/ Someone else’s will turn

But 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”

Wherever you are in life, it isn’t too late to find purpose. Or too find some way to feel truly fulfilled by what you are on this earth doing. We all have something uniquely ours to offer and ways to use them make tiny changes in this world.

While am proud of myself for having the courage to write this blog (though I admit that I am woefully in need of a professional editor), it will never hold a candle to my best “tiny change” in this world- my children.

They are all so amazing, and all so different. But the best thing of all is that they are all good people deep inside where it matters the most. I hope that what we have done and will continue to do as a parents will give them the courage to do the right thing in a tough situation, and to always use their unique talents and quirks in the best way possible.

I hope that I can be brave enough to complete this journey in a way that teaches them that emotions are okay, but that giving up is not. I hope that I have that strength. My mother showed me by example how giving up only makes things worse. I can only hope that I leave an example for my kids based on the opposite approach.

So… only six more months left in this year. I have now marched 10 months of my life toward the median life expectancy for a stage IV colon cancer patient of 27 months post diagnosis. I expect that the next six months will go as quickly as the first six. I only hope that I have the health and courage to continue to live and experience each remaining day as much as possible, and that I will continue to stay as true as I can to the promises I made in January.

When there’s a burning in your heart
An endless yearning in your heart
Build it bigger than the sun
Let it grow, let it grow
When there’s a burning in your heart
Don’t be alarmed

This fire grows higher

When there’s a doubt within your mind
Because you’re thinking all the time
Framing rights into wrongs
Move along, move along
When there’s a doubt within your mind…

Death Cab for Cutie, “You are a Tourist”

One of the most sustaining lessons that I’ve learned about living with metastatic cancer is that there very seldom are definitive answers. Most clouds come with silver linings. Most rays of sunshine come with darkened edges, lingering questions, and asterisks.

Getting the results of my CT scan proved to be one of those moments. I was hoping for a definite answer to the question, “Did I make the right decision in pushing for this surgery?”  I think that the answer I got to this question was YES*.  Notice the giant asterisk?  There was a lot to be happy about in this report. And there were plenty of lingering questions and asterisks.

The rays of sunshine were bright. My lungs are still clear. My lymph nodes are still clear, my liver showed no signs of residual or recurrent metastatic disease. Let’s reflect on that for a moment. Five weeks ago, I had 17 masses- most of them very small. Today I have none. And that is amazing. I went 4 months off of systemic chemo, and my disease didn’t spread out to the most common culprits- my lungs and my lymph nodes- and that it amazing. My muscles and spinal column are clear. At least we think. More on that later.

The asterisks were both scary and muddled.

Firstly, I now have fairly sizeable cystic masses on both of my ovaries. The report offers up 3 differential possibilities for what they could be:

• cystic masses (non-cancerous)
• tubo-ovarian abscesses
• metastasis.

Secondly, I have a very large collection of fluid beneath my liver on the right side and extending downward into the right pelvis. The report labels this fluid collection as “suspicious for post-surgical abscess.”

The day after receiving results, I traveled to Cleveland to meet with my HIPEC surgeon, who seemed to dismiss these findings for the most part. He didn’t believe that scans so soon after surgery were very valuable, especially after one so extensive since there was bound to be fluid build-up. He said that most likely in both cases that this was the case, but in the meantime to keep an eye out for other symptoms such as a fever that might signal an infection requiring immediate care.

These rays of hope, naturally, had to be followed up and tempered with rather blunt and insensitive comments. “Even if the ovarian cysts are metastases, from a surgical standpoint that really isn’t relevant. The peritoneal cancer inside of your bowel loops past isn’t ever going to go away.  At best, chemo will only serve to keep it at bay for a while. Your situation is not a curable one.”

These statements were disturbing for a couple of reasons.  For one, this is the first that I have heard from anyone that there is no possibility of chemo diminishing what’s left of the peri mets in and around my bowel loops.  I know that it is difficult to treat peri mets with chemo.  That is why I pushed so hard for HIPEC!  Secondly, this dude just basically told me “Well, since the cancer progression in my peritoneum is inevitable anyway, it would be a waste of time to surgically treat ovarian metastases. Thanks for the shot of hopelessness, doc!

::Steps on Soapbox::

This is a perfect example of why I think that it is important to shop around for doctors:

• I haven’t liked this particular surgeon since the beginning, and strongly suspect he is the reason why my surgery was delayed, unnecessarily putting me at risk. The ONLY reason that he operated on me was because Cleveland was the only place offering me surgery, and they all came together as a package deal. My liver surgeon is one of the best in his field and proved it by ridding me of all of the metastases in my liver. I can’t say that I got similar results from this guy.
• I believe it’s important to surround yourself with doctors who don’t treat you like you are a lost cause or an inevitable conclusion. When you hear the words, “chemo for life,” “palliative only,” or “non-curable” head for the hills. The data may tell them that. And they may very likely be right in that assessment.

I am fully aware of how my situation will eventually end up.  I don’t need my doctor to constantly remind me of that.  There are always exceptions and just because something usually happens doesn’t mean that that thing is going to be true for me. But even more importantly- if my doctor is using language like that, I know that he or she is seeing me entirely in that context.

This means that they aren’t taking risks, and they aren’t fighting like hell to make me the exception to all of that data. It’s time to find someone who will.

::steps off of soapbox::

My recovery has been steadily improving also, with another asterisk. I can say that everything is markedly better than is was just a couple of weeks ago. I’m no longer nauseous. My appetite is back. My energy is finally starting to come back. But then there is the back pain. The only symptom that has gotten progressively worse. Enough that I have reverted back to Oxycodone several times a day to get through it. Perhaps it is related to the fluid collection in my abdomen? Perhaps it has been exacerbated by the spinal injury I sustained as a kid where I broke 3 vertebrae around that area? Perhaps it is something else?

And so I met with my oncologist this morning, and he is suggesting two more MRIs. One will be of my pelvis to take a closer look at the masses on my ovaries. Another will be a closer look at my spine, just as a precaution because of the back pain mentioned above. Let’s hope that these next scans provide clarity, and swipe the slate clean of all of the questions and asterisks. I will hope for the clarity, but plan for the asterisks.

One good piece of news is that my tumor markers are down to the high end of the “normal” range. They were nearly triple this number only 2 weeks prior to my surgery. This is a very good sign.

I’m trying to get to that place of a clean, fresh start. A place where I feel healthy overall and only have one area with cancer to focus on and target. A place where I can let hope burn and let the flames grow higher. But I know better. To live with stage 4 cancer means to always live with some degree of doubt. They spoke to me loud and clear during my “scanxiety” waiting period.

But for the next few days, and hopefully for the next couple of months as I start back to chemo, I will try to put them on a leash. I will try to keep the worries at a level that I can live with. I must make peace with the asterisks.

If I wait for the asterisks to clear before I can live, I might never stop waiting.  I believe that this surgery has bought me additional time.  How much is anyone’s guess, but I do know that I can’t afford to waste any of it.  Whatever the scans say, I have done what I can.  Because this is where the rest of my life exists.  In every treatment that has a net positive result and helps me stay here longer, in every scan that brings me hope or fear, and in the gaps between the scans.  Another stay of execution, and another chance at two fresh months of life.  Both with, or without the asterisks.

There’s a hole in the drywall still not fixed
I just haven’t gotten around to it
And besides I’m starting to get used to the gap

So you wish you could find some way to help
Don’t be so hard on myself
So why is it easy for everyone else?
I’m not always like this
There’s always tomorrow I guess

But when I turn out the lights
When I turn out the lights
When I turn out the lights
There’s no one left
Between myself and me

Julien Baker, “Turn Out the Lights”

There’s a gap between the scan and the results. This interminable space. A grand, blank canvas for my brain, big and wide enough to pencil in all the possible “what-ifs” it can conjure up.  The heart dips the brush in and embellishes them with color.  It knows every nuanced blue shade of fear, and arranges them appropriately for each possible outcome.

Logic tiptoes around each of them.  He offers why each is or isn’t likely but fools no-one.  His voice shakes, painfully aware that he is out of his element here.  Even he no longer believes that worst case and very bad scenarios won’t happen.

With logic on tenuous ground, intuition tries it’s hand.  It scans the face and body language of the tech in search of clues; even though I know that they aren’t officially responsible for interpreting them.  Why didn’t they make eye contact?  Why did they rush me back to the locker room?  Do they not want to give bad news away?  Is the smile and hug a good sign, or is this because things are bad and they feel sorry for me?

Superstition might even take it’s turn.  My horoscope was right about a big event around March 7th that would change my perspective on everything. Is it also right about the next six months being about deep personal inner transformation?  If so what does that mean?  For that matter, is this blog post jinxing the outcome?  Did all of the bad things that happened on March 8th happen because of my blog post titled “Let’s Play Pretend?” Did imagining a best case ensure the worst?  YUP.  I’m smarter than this. And have to admit that I don’t really believe it when I think these things. But logic is losing credibility fast, so letting his nemesis entertain me with a story for a bit can’t hurt, can it?  As I mentioned in “The Human Story” we are ALL suckers for a good story, aren’t we?

In this space, everything concrete becomes fragile.  In the span of a phone call or a scan of a written report everything solid beneath and around me could shatter.  My imagination sees everything falling away, so I cling to the solid things around me to stay stable.  Connection.  Touch.  Hugs and snuggles with my husband and kids.  They remind me of everything good that I have and everything good that I have created.  At least there is that.  At least they will remain. Proof that I existed in their memories. Evidence for the world that my existence left something beautiful behind.

I know why this scan in particular has me worried.  I’ve been off systemic chemo for four months.  It’s playing with fire.  How silly of me to imagine that my world won’t get set aflame.  “Go back to chemo.”  Two out of three surgeons wouldn’t operate.  Should I have listened to them?  Did I take the right gamble?  They promised me a surgery that would add years to my life, then pulled it from me like a rug out from under my feet when they saw peri mets.  Was I on tilt when I decided to go back to Cleveland for surgery, despite knowing that it meant I’d be off chemo for an additional 6 weeks to recover?  Was I unable to lay down my pocket Kings despite seeing an Ace come up on the flop?

The consequences of my mistakes didn’t used to be so high.  They could be absorbed and moved past.  Brushed over like profanities written in sand.  Not noticing and taking action on health symptoms cost me my life.  The stakes of my decisions the past few months will determine the length of what remains.  Maybe everything will be as expected.  I’ve got at least an even money chance of that.  But I’ve lost my faith in the religion of “everything will work out” and “nothing bad is ever permanent.”

When I imagine worst case results, my heart dips it’s brush into black.  I am hard on myself, and all of those baked in reflexes to blame myself start seeping through.  When I imagine safe results, it dips in shades of pink and hope, and perhaps some light green for new beginnings.  It paints a redemption story of second chances.  At least until the next scan.

So many colors.  So many thoughts to fill a single canvas; a single gap of waiting for results.

I welcome logic back to the picture and calm him down a bit.  Though out of his element at the moment, he is still my crutch.  He is still my old friend and the one I return to in the end.  Now that he is stable, I let him speak again.

I am still irreparably human.  The genetics, circumstances, and choices- unconscious an conscious- that brought me here are now several lengths behind me.  I am still strapped in to the coaster and bound to go where it will go.  Whether it’s a climb, dip or turn I will meet it.  The results of this scan will be what they will be, and it will meet whatever comes.  Because I don’t have a choice.

And no matter what the words say- the lights come back on, the sun will rise and tomorrow will come.  And I will keep living the best life I can with what I’ve been given.  Until the next scan.

When late summer’s swelter
leaves us listless,
and the soil cracks
for want of rain, remember:
the seeds of new life are small
and often hard to see

Francis Daulerio, “Genovese Basil” as published in Please Plant this Book, 2018

Published by The Head and The Hand,

https://www.theheadandthehand.com/store?category=Please+Plant+This+Book

As I turn the corner past one full month since my surgery, I am reflecting upon how much I’ve learned about how the physical and mental co-mingle in the presence of pain and sickness.

This is not to say that I’ve never toughed through pain and sickness before. It’s just to say that this is the first time that I’ve experienced it for such a prolonged period of time. And faced it in the light of what I might have to go through in the future. This, for me, cast an extra gloomy shadow over my inability to find relief. Especially in the evening hours, when I was left to my pain and my brain. Two things that should never be allowed to talk to each other without extra company.

This week marked a turning point. My incision pain is gone. My muscle pain is better. My appetite is coming back. The gas pain and nausea have significantly decreased. The slowest thing to return is energy. But I am getting there.

They say that time is a healer, but what I really believe is that I owe this week’s progress- more than anything- to the actions I took last week; and the week before that. I’ve been forcing tiny seeds through dried cracked soil. Cursing every moment. Begging for something to sprout.

During these weeks, it has hurt to walk. I’ve been winded doing laps up and down the driveway. I’ve walked through gas pain and thought, “What’s the point?”

And then there was eating. Picture this: You have in your mouth a straw that is attached to a fully inflated balloon. Your job is to blow, to push more air into something that already feels like it’s going to explode. For a while this is EXACTLY what eating felt like.

I had days where I didn’t want to do either. But the thing is, NOT doing anything didn’t seem to do much to make me feel better either. It’s in these moments, I had to give in to my coach (my husband), and do it anyway. I had to draw on reserves. I pictured my mother drifting further and further away, lost to a rip-tide that became insurmountable for her. She had adjusted her eyes to the darkness and accepted it. The light was gone. Not fighting didn’t make her better. It only made things worse. It only made things harder.

The kids were excellent wingmen during this period as well. Swiftly retrieving Mom’s puke bucket just in time. “Walking” with me to the end of the driveway and back a few times. Then to the end of the block and back. Then to the end of the street and back. Still waiting to get past that, but I’m making progress.

Carnation instant breakfasts coated my stomach enough to make small solid meals possible again. Cheerios, cocoa puffs, noodle soup, etc.

All of these were little seeds that helped to get my body back and functioning again. Each meal, each sip a bit of rain. Add a little sunlight in the form of time, and then bit by bit, I squint my eyes and see seeds of normal health popping through.

But there is more going on than that.

Our machine is so much more more than a hunk of meat. It is also a brain; seeking, and absorbing information. And a heart; reacting to each new input with hope and or fear.

After I received my Stage 4 diagnosis, I sought out and joined several secret Facebook groups for colon cancer. Along the way, I met people, had casual conversations on various topics and friended them on Facebook.

In the past 6 weeks, three of these new Facebook friends have died. The first was before my surgery. A Texas Mom of boys. A few months ago, she was excited about a new trial. Then the Facebook post from a relative that she had passed.

Another was from the Cleveland area. She is the only one with Stage 4 CRC that I met with a higher number of positive regional lymph nodes at diagnosis than me (a poor prognostic indicator). When I talked with and friended her, she was nearly five years past diagnosis. A fact that gave me hope. She went on a long European cruise and then collapsed on her way off the gangplank at the end. It had spread to her spinal fluid and she could no longer walk. She posted that she was heading to hospice care. A week later- just after arriving back in Dayton from my surgery in Cleveland- she checked into the ICU at the clinic there and never checked out again.

And just this morning a third. A woman who had a vibrant career as an animator, and who had Disney on her resume. A couple of months ago, she had been denied a trial because she was too far progressed, and went on last-line chemo treatment (Lonsurf). She stuck it through to go on the trip of a lifetime in Korea and Japan. Upon return she faded almost immediately, with her adult daughter posting that she was in and out of consciousness for a few days before finally passing.

I knew none of these women personally. But I knew their stories. I had messaged them. And then they were gone. Processing these losses impacts my heart and brain in same way that my diet and movement levels impact my physical health. How much is too much? How much is just right?

When I go outside and walk, I am not ignoring my fatigue. I am acknowledging it and saying, “but I can do this anyway.” I do not walk a mile. I walk what I can. And then challenge myself to go a block further the next day.

When I put food into a body that is feels like it is going to burst, I am not denying my sickness or pain. I am acknowledging that it is uncomfortable to eat, but that I must do it anyway. I do not eat a bowl of ice cream. I drink a breakfast shake if that is all I can take. Or eat a few crackers. And then challenge myself to eat one more the next day.

So should it follow that I manage my “diet” of mental input in a similar manner? How do I balance the double-edged sword that is an online community of people with my disease going through this with me? A community that reminds me, each and every time I pick up my phone, that I have cancer?

I learn so much from their stories. I rejoice in the good news. But I see the bad news as well. The setbacks. The progressions. The deaths. I am never far away from the next reminder that my life has an expiration date that is measured in months and single digit years.

I’m still working on this one. I don’t want to live in denial of my disease. Or the reality of my prognosis. I also want to stay as informed as I can possibly be and learn from others’ experience. But I’m starting to wonder whether periodic breaks are needed. And if so, how, and how often? When do I just decide to wrap up everything cancer and put it in a box so I can just focus on life for a few hours or days of time?

I am finding that I pick up my phone less often. I am finding that I stare into moments of quiet more often. Letting things so before reaching out for the distraction. I am finding that I now leave it off when I sit down at the kitchen dinner table or am doing another activity that takes up my attention.

Maybe these are just some seeds I am planting. Or a little bit of rain. Let’s see what the sunlight brings next.

We took a vow in summertime/ Now we find ourselves in late December
I believe that New Year’s Eve/ Will be the perfect time for their great surrender
But they don’t remember

Anger wants a voice, voices wanna sing
Singers harmonize ’til they can’t hear anything
I thought that I was free from all that questionin’

But every time a problem ends, another one begins

And the stone walls of Harmony Hall bear witness
Anybody with a worried mind could never forgive the sight
Of wicked snakes inside a place you thought was dignified
I don’t wanna live like this, but I don’t wanna die

Vampire Weekend, “Harmony Hall”

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

The last few weeks have taught me another phase of this journey. The eternal stall for maintenance. I made it to the top of the hill and got my surgery. And now? I am stuck at the bottom waiting for the repairman to come out and get the engine running again. Somebody came along and shut my internal locus off indeterminately and I am stalled again. Waiting for energy. Waiting to feel better. Waiting to be productive and to do something about something again. It’s like an iron blanket draped over me that I just can’t seem to shake off. I can’t get momentum to push my body forward, or even keep my head clear. For a while there, I felt like an 80-year-old taking up residence in a recliner or on a sofa for hours and simply staring at whatever was in front of me. I was literally reduced to falling asleep in a chair while watching the goldfish tank.

Three-and-a-half weeks post-surgery, the incision pain and muscle pain are thankfully dulled. I am actually down to almost no pain medication at this point. I realized that taking pain medications on a largely empty stomach has been doing more harm than good; exacerbating my nausea, continuing the cycle of not wanting to eat. I need to eat to get my energy back, and I need to not feel sick so that I can eat. I am getting there. My abdominal organs appear to still be very angry and inflamed, learning how to heal and work again. I go to sleep in a recliner and often wake halfway through the night feeling sick and end up going up to take a 3-4 hour bath to settle my way through to morning, often falling asleep in the tub several times before morning.

I can tell that I’ve lost weight; something I expect my oncologist to not be thrilled about. If I want to get back to systemic chemo. So I’m grabbing each better moment as it comes. Feel better? Have a breakfast shake. Try walking. Try solid food. Step outside to breathe fresh air.

It be something as small as rolling down the car windows on the way to and from a medical appointment. Or listening to my kids talk about their days. Or kisses from my husband, enjoying his presence and smell. That musky smell that has been there since I was a spindly teenager holding on for dear life. As if he might disappear if I didn’t. This person who saw me. Who loved me for me instead of an idea of who I should be.

Bits of humanity, bits of me pop out again in each of these moments. These moments, so tiny; but right now all that I have. But the number of moments are increasing.

Last night, I woke several times, but was able to get back to sleep and make it through a night. This morning, I got up for a pre-scheduled hair appointment, had a seated shower and got dressed like a real person for the day. I still had my husband drive me out of caution, but it worked. I got out. And today I feel better. Today I feel more like a functioning person than I have for quite a while.

When the coaster stalled, it was going through a tunnel and I now sit perched, half-in and half-out. The heavy darkness is daunting, but I can see all of the lightness ahead and it is calling to me. It is dangerous to get too comfortable. I am even looking forward to getting back to systemic chemo. Just so that I can be back up on that horse. Just to feel like I am fighting again.

I have to push forward- even if just an inch- every day. Into more and more moments. And those will build on each other until I am back again. Current wish list items include: a walk in nature, slowly enjoying something delightfully sweet and fruity, getting dressed and going out to dinner, and sleeping a full night with ease. These will help me get to the bolder goals- enjoying a day trip with my family, feeling grains of sand and water on my feet, riding a theme park ride and feeling the air on my face.

I’m missing moments of forgetfulness. Moments that flirt with a feeling that used to come periodically, but now feel as rare as a diamond. It’s the feeling of being carefree.

I have hope that I can get back there again in fleeting moments of joy. The way is through is to grab these moments of momentum with everything I have, and move into the other side of the tunnel.

I know you are a cynic/ but I think I can convince you.
Yeah, cause broken people can get better/ if they really want to.
Or at least that’s what I have to tell myself if I am hoping to survive.
It’s a long road up to recovery from here, a long way back to the light.

Frank Turner, “Recovery”

Pain.

It isn’t something that I talk about a lot in this blog; I’ve used it primarily as a tool to explore the psychological and emotional toll of an end-stage cancer diagnosis.

However, I suspect that as I progress, it will be harder and harder to keep the two separate. Pain is like a veil. When it is all-consuming and immediate, it drapes over you until you are unable to see anything beyond it.

The good thing about pain is that it is never supposed to last forever. It always ends, if we can only bear through it, be strong, and let it pass.

The flip side to Frost’s “Nothing Gold Can Stay” is that the inverse must also be true, correct?

I am usually a pretty tough cookie when it comes to pain. Minor physical annoyances gained no sympathies growing up. The term “melodramatic” was thrown around a lot if an attempt was made, so I quickly learned how to suck them up and ignore them. So if something does knock me down? Pay attention.

I knew going in that this was going to be a tough surgery with a long recovery. I had envisioned day 1 being the worst, with a slow steady climb up from there. What I didn’t know was that more like a series of hills. It gets worse, then easier, than worse, etc. The only good news is that the hills themselves appear to get less steep as you continue on the long journey.

Each day has been unique. Each day my body decides for me which front of the overall pain war I will be facing that day.

Initially, it was mostly incision pain and exhaustion. Then the muscle soreness from lack of movement came marching in to the chorus. Not to be outdone, severe gas pain and cramps made their entrance, loud and proud. This was all in the first week. But I was okay. This is ground zero, only up from here! I didn’t know yet that it was only the first hill.

Before leaving the hospital, I was treated to two blood transfusions and two iron infusions to try to get my internal engine back up and running again. At first sign of an uptick, they released me, but we stayed in a hotel for two additional nights locally anyway just in case.

My first really bad night was also the first night out of the hospital. I spent hours writhing in pain as my husband snored blissfully all night beside me. In the morning, I was drenched in pain from head to toe and had barely slept. I snapped at my husband.

In the morning I had a bit of a break down.

I’ve had surgery before. I have been sick before. It happens. It passes. But a long night of sleepless misery is the perfect time for dark thoughts to swoop in and stay awhile. It gives them ample room for storytelling.

I started to think of the inevitable pain that will begin to increase at the end. I thought about the limitations of pain medications. I thought about how I felt like Abe and I were living in separate worlds where there is no way that he can feel or fully understand what I am going through. I realize that anything I take to help ease the pain is bound to also make me less lucid.

The weight of how terrible this will all be in the end soaked into me, layer by layer.  We try to soft-focus these details to protect ourselves.  Pain without adequate relief is suffering.  Sacrificing your awareness of the time left to mitigate pain is an unfair trade-off.  Will seeing Mom this way hurt my kids?  Will I snap at them too?

I will not simply one day go frolicking in a meadow, fall asleep and never wake up. Why can’t we do that? Why haven’t we figured out a better way?  Probably because we all just assume that we will fall peacefully asleep in bed at 95.

Of course, this surgery is not the end yet. I fought for this surgery. I hope that it will buy me some time. I had 17 tumors ablated or removed from my liver (all but four sub-centimeter), the rest of my colon removed, my omentum removed, cyto-reductive surgery of peri mets, and finally HIPEC (heated chemo bath). The whole surgery took upwards of 14 hours. When it ended at around 12:30 the next morning they didn’t bother waking me, but sent me instead to the ICU under continued sedation until morning. I was asleep for nearly a full 24 hours in total.

And they didn’t get everything. There are still some Peri mets wrapped up in my intestinal loops. But they did get a LOT. A whole lot. That has to buy me time- very precious time- that will be more than worth every bit of the pain that I am going through now.

Week #2 has brought increased gas pain, which finally led to vomiting. Fatigue has persisted. My appetite is pretty much non-existent. Unsurprisingly, my blood work from Tuesday has come back with very low ironiron co again, so I need to call and schedule another iron infusion with my oncologist here locally.

This time, it will get better. This time it will pass.

And today I am 41. Just waking up today, looking around, and seeing all of the wonderful things that I have made in my life has been priceless. Grand gestures not open to me, I’ve soaked in a few simple pleasures. A long bath that makes me a prune to fend off tummy troubles. A half of a plate of eggs made lovingly by my husband trying to keep me eating. A lazy romantic comedy on Netflix. Precious head kisses for the children.

Tiny reminders that it should get better from here, at least for a while. That I will recover. Tiny reminders that I am still here and can do these things. Tiny reminders that I loved and that I love in return. Tiny reminders to leave fears of tomorrow in tomorrow.

Cold creeps through my fingertips like/The frostbitten night, the frostbitten night

Cold creeps up the length of my spine/I’m surrendering, I am surrendering.

Cold creeps stole the innocence/Look what they left me with, look what they left me with

Cold touches instruments/Dig into my head again, dig into my head

Owl John, “Cold Creeps”

One month ago, I wrote a post on the concept of trust. It explored the difficulty of trying to find a way to balance between (as the National phrased it in those opening lyrics) “careful fear and dead devotion:”

“Trust is one of those things,” I wrote, “that is shaped by our experience with the world. The more we get hurt, or the more we have experience with those who are in positions to do right and yet still fail to do so, the less we are inclined to have faith that things will be different in the future.”

I dove deep into exploration of how I could begin to move past my own lack of trust. How could I look beyond my self-protective black and white thinking to see all of the shades of grey in-between?

“There are “good guys” and “bad guys” in every profession. There are “good guys” and “bad guys” at every level of authority… (and) there are lots of people with good intentions who simply make mistakes. I am one of those people. I’ve been learning to expand my heart to let those people in.”

I am flawed. I make mistakes. I have to allow other well-intentioned people to make mistakes as well. But…

“When it comes to my medical team? My standards will remain higher. Because I deserve BOTH the best care and the best expertise. Everybody does.”

Little did I know just how deeply the week and month that followed would put all of these explorations to the test. The day I went in to my surgery- a surgery that never happened- and the events that followed took away all of the weight that I had placed onto trust. What’s left is the sound of the crash from the scale of fear hitting the ground.

I’ve written before about the notion of death being my constant companion. My back seat driver. It tells me to pay attention. Not to drive too fast, to take the time to notice the details. This companion is sometimes thoughtful, often sad, and sometimes filled with love. Since that day in Cleveland last month, that companion, more than ever, has been dressed in a cloak of fear.

The fear sometimes creeps like a shadow. A constant, dull complement to my daily life. Other times, it is a boxer, hitting me from the left after a moment of normalcy and joy. I fall outside of myself, then remember in one hard, swift blow.

And often- especially lately, the fear is those instruments digging into my head again.

When fear takes over from sadness, it has a mission- to fight, flee or freeze. My fear went into fight mode. Flying to Baltimore. Re-visiting Ohio State. It was searching for solutions and for a new team that could give me hope and restore some of the trust that had been broken. Ultimately, those alternatives fell through and I find myself, one month later, right back where I started. Headed back into surgery at Cleveland.

But my experiences did teach me a lesson. And it’s one that I hope that anyone who is reading this who has cancer, or who loves someone who has cancer will learn from- don’t ever take just one doctor’s answer as an absolute truth.

I’ve learned that 90-95% of surgeons and oncologists play by the book. Another word for this book is “standard of care.” If I had only asked Ohio State, I would have received the book answer: You only operate to remove cancer if it is limited to one location. Resection, even at a future date had been removed from her vernacular altogether. Go back to chemo, was her answer.

You have to go out and search for the most skilled surgeons.  Surgeons willing to take a risk. Often they are at major cancer centers, such as MD Anderson, Memorial Sloan or the Cleveland Clinic- but not always. Sometimes the bureaucracy of the major centers can themselves hinder even skilled surgeons from going too far out on the limb.

The surgeon that I saw in Baltimore is a renowned surgeon in the area of HIPEC (heated intraperitoneal chemotherapy). He took a look at pictures that my liver surgeon had taken of the laparoscopy monitor and said “that’s actually not that bad.” He was willing to do HIPEC and operate on the liver. I got the feeling that this was a person who has reached a point in his career where he can afford to pick and choose his cases. To find the tough ones and take them on. In the end, my case was too tough for him- NOT because of my peritoneal mets, but because of my liver mets. He could do both, but not with that much liver involvement. He wasn’t specialized enough in liver surgery for my particular case. And so? Go back to chemo was his answer.

Cleveland has been all over the map. First, my surgery didn’t happen because my peritoneal mets were too extensive, and since he could only operate on the liver if the peritoneal mets were addressed in the same surgery it had to be called off. Then, I could have the surgery, but a modified version of it.

And that modified version has changed slightly in every conversation. Not a full resection of the liver, but ablation of visible tumors. Then the paperwork comes with scheduling for and insurance approvals for a total left lobectomy plus ablation of right-sided tumors (my original surgery).

As of yesterday, I learned that he is planning on doing a wedge resection and ablation of “visible” tumors, offering clarification that visible means by imaging and not the naked eye. “Don’t worry about the paperwork” he says, “just ask me.” Reading between the lines, I am guessing that the more aggressive surgery is on the paperwork either as a contingency (just in case he can do it after all) or (more likely) they just didn’t edit the description from the prior surgery.

With Cleveland as the only surgical option left on the table, I find myself back where I started. I am once again handing my length and quality of life over to a team that has broken my trust. I fully expected, after my discussions with Baltimore, that they would see my liver met growth, back out, and (just like everyone else) and tell me to “go back to chemo.” Only this time, the reason would be my liver instead of the peritoneum.

“I reviewed the MRI scans, and I didn’t see enough significant growth to preclude the surgery.” I tried not to show it, but my jaw hit the floor.

Three surgeons. Three locations. Three different answers. Only one team that would do the surgery.

If you want to take an aggressive approach, don’t ever take that first answer as gospel, especially since 90-95% of the time that answer will be standard of care protocol. Go to another major center for a second opinion or get access to online forums and research other patients’ experiences. Who was their surgeon or oncologist? What was the outcome? This will identify to you where to go to find a doctor who will take a risk. This is most important for stage 4 cancer patients. If you are not stage 4 (metastatic), and the odds are in favor of survival, standard of care in most cases IS your best option.

My survival statistics are very low. Going back to chemo with the knowledge that it will eventually fail is like playing poker, but never pushing “all-in.” The blinds are eventually going to bite away at your stack until there is nothing left. The cancer will grow resistant to chemo and win. The only way for a chance for longer term, to make the final table, is to take that risk. To push all in.

I am terrified. How do I put my length and quality of life into the hands of a team that has already broken my trust?

Fear’s instruments go to work, digging deeper than ever before.

After yesterday’s appointment, which was heavily focused on ensuring I signed all of the authorizations, my leading theory is my first surgery was called off because they had failed to have me sign an authorization for HIPEC, so the HIPEC surgeon backed out with the excuse that the mets were too extensive. Of course, I really have no clue, this is just my mind on overdrive searching for answers that make sense, since I haven’t gotten one yet from the team itself.

Nine times out of ten, I would take integrity and honesty over skill and knowledge. But in this situation, I find myself hoping it was self-protective lying. Because if my HIPEC surgeon really thought that the peritoneal mets were “too extensive for anyone to handle” he has no business operating on me at all. Especially given the high risk for complications with this particular surgery. And the chances of it coming back soon if it isn’t done correctly.

And then I worry about the lack of response to my MRI. Did he do a close enough examination of the images during the short time he was away? Is he rushing in without adequately re-examining because he doesn’t want to call off surgery a second time? Is he rushing in out of guilt because they messed up last time, and have now put me at risk and the mets grew because of my extended time of of systemic chemo?

Dig. Dig. Dig. I wish I could be going into this surgery with a fresh start. I wish that I could go back to that place. Before September. Back to the place where I could go into surgery with confidence that everything would be okay. Where doctors would “do no harm.” But this team is my only surgical option right now. So I have to go back.

I have to go back to the same check-in desk, get the same speech and wait for my name to be called. I have to go back to the same PAC-U that left me with needle scars that remain a month later. I have to say goodbye to my husband again before they push me through the doors to the OR. I have to be told to think “positive thoughts” before the anesthesia mask is put over my face to knock me out. I have to be wheeled down those same hallways where I woke, saw that there was no surgery and asked for answers but received none. I have to go back to the place where the nurse made jokes and shuffled me out as quickly as possible after my surgeon said, “I am sorry” with finality.

“But there is a time and a place for everything. I have attended to all of the things I can control…”

It’s scheduled. It’s happening. At this point, I have no choice but to take as much weight as I can off of the side of fear and back to the side of faith and trust. I remind myself that my liver surgeon is highly renowned, and that he has a vested interest in this surgery being as successful as it can be. I have to remind myself that this is the surgeon who has spoken to me on his personal cell phone and answered personal texts on multiple occasions. I have to tell myself that they wouldn’t have an incompetent surgeon on staff performing HIPEC at the Cleveland Clinic. I have to remind myself that the surgeon who is operating on my bowels was both direct and personable; and that he is on a team of GI surgeons ranked #2 in the country.

I have to tell myself that they can do this. I have to tell myself that I can do this. See you all on the other side of surgery.

And I miss the summer/ but didn’t care

There will always be another/ if I make it to next year

Mastersystem, “A Waste of Daylight”

January through March in Ohio are the longest months.  Christmas is over.  Vacation time is spent.  It’s time to get back to the business of productivity.  Time to lose the weight.  Time to make up for December’s schedule delays.  January begins with a bang of promises and vigor only to end, inevitably, with a whimper.  What’s worse is that by then, the season is still only halfway through.  There are two-and-a-half months of snow, freezing rain and grey skies yet to plow through.

Most of the time, when the snow comes it isn’t even big and satisfying.  It’s just enoughto cause a wreck on the highway in time to double your daily commute.  Most of the time, the cold rain isn’t even freezing. It’s just cold enough to cut to the bone and soak your shoes through to your socks. 

Offices and schools are a cacophony of hacks and sniffles.  By the end of January, we are already longing for spring.  We are mentally fast-forwarding through the days, weeks and months until the sun comes out to thaw everything out again.  To bring new life to everything that has become dormant and stuck.

We waste these days away, longing for them to be done.  We pine for the next season.  We take for granted that it will always be there. Have you ever seen the daffodils pop up and wonder if it will be your last Spring?  Have you ever sat in a hammock in your back yard, stared at the clouds, and feared that next summer that hammock will lie empty?  Have you sent your kids off on the first day of school and wondered if it’s the last grade that you get to see your kids enter?  I’m about to find out what it is like to know that feeling.  It’s a feeling that I need to make friends with, because it’s not going to go away for as long as I am still here.

I listen to my daily 10-minute meditations.  I hear the lessons on the nature of impermanence.  I see the Facebook memes.  Nothing bad or scary is permanent, they say.  Things are always changing.  Better times will come.  While most of the time, this is an excellent mantra for life, it’s not so great when facing death.  It’s clear to me that the people who write and share these sayings have never been told that they have a 5-10% chance of making it through the next 5 years.  Of course, nobody knows how much time I really have left.  I don’t get to know the answer to that.  Until I do.  So I am in no rush to find the answer.

For the first dreary Ohio winter I can remember, I made conscious efforts to NOT fast-forward through the days, the weeks and the months.  Three dreary months constitutes just a small fraction of most people’s remaining lifespans.  It might have been a third, a quarter or a tenth of what’s left of mine.

In the blog post titled, “365 days” I said that I felt comfortable that I would make it through 2019, and would hopefully- aside from chemo side effects and surgery recovery- be in a position where I could still be free enough from sickness to enjoy it.  I still feel that way.  Most of the time.  But there have been moments that I have worried that that won’t happen.

For about 36 hours after I woke up in Cleveland, I felt, for the first time, that I wouldn’t make it through the year; that things would begin declining rapidly.  Before we left the hospital, checked out of the hotel (well, Abe did.  I was in a seat in the lobby sobbing uncontrollably), and headed home, we felt as if we had been given an implied prognosis of “get your affairs in order, your cancer is spreading everywhere.  It’s over.”  When the surgeon walked back his statements on the peritoneal mets being inoperable the next day, that feeling eased a little.  But the scars are still there.

The news that my liver mets have been growing while I continue to be out of systemic treatment waiting to see if I get surgery was not terribly surprising, at least for me.  That doesn’t make it any less terrifying.  The scan caught the base of my lungs and they are still clear- but what about my lymph nodes?  There haven’t been any scans of that area since January 9th.  And how quickly are my peri mets spreading?

I tell myself that there are still enough treatment options to string out that surely I will still be here to ring in 2020.  Hopefully cancer gets the memo.  But cancer is an asshole.  It’s going to do what it’s going to do despite my self-assurances.

So my brain picks over and analyses every “off” feeling in my body.  The slightly congested feeling in my chest for the past two months.  The doctors have put a stethoscope to my back every visit since and asked me to breathe, and haven’t noted any concerns.  That’s good, right?  The twinge in my right ribcage near where a large group of my peri mets are hanging out, or possibly one of my liver tumors…. is this the beginning of the pain?  Or am I just freaking out because the idea has been planted, and it’s late at night and I have nothing left to distract me?

The median survival for a newly diagnosed stage IV colon cancer patient is 26 months.  That means half of them will die before that time and half of them will die afterwards.  Nine out of ten will be gone at the 5-year mark.  If I had gotten a resection on the 8th… if they hadn’t found peritoneal disease, MY chances would have averaged to around a 40% shot at five years.  And I was determined to be one of the lucky slight minority.

Today, I’m just determined to live up to my declarations at the start of the year.  I’m going to stay as healthy as I can for as long as I can.

I am going on that trip to Hawaii that my husband and I always planned for our 20th anniversary.  We moved it up 8 months, and it will now be to celebrate my first cancerversary instead.  At the age of 18, on a school geology trip to Hawaii, whilst camping on a beach in Kauai, my then high school sweetheart decided that he wanted to marry me.  So I have decided that I will stay healthy enough to fly there to see that beach.  I have decided I will be here to enjoy another Christmas with my children.  I will do whatever I can to stay healthy enough to make it to a family resort in Florida.  To watch them play in the pool and the ocean and enjoy being kids.

And if I make it through this year as promised?  I will set a new goal, which will be to live to the median survival date of my initial prognosis.  I have a lot of things going against me, but things could still be far worse.  So, who is to say that I won’t hit that median?  Who is to say that I won’t make it to next summer?  That this one won’t be my last?  That I won’t get to see more than one more first day of school?  If I made it to 26 months, I would get see my oldest daughter start high school.  I would see her 15th birthday.

And I would not take another second, moment, month or season of it for granted.

A sprinter, learning to wait
A marathon runner, my ankles are sprained.

Julien Baker, “Sprained Ankle”

The internal locus is perpetually analysing problems. Like an infant discovering a new object it picks them up off of the ground, shakes them to see if they make noise, turns them around to see things from all angles, and then sticks them in his mouth for good measure. All five senses scan all possible outcomes and create backup plans. I call my internal locus “the fixer” and for the past three weeks it’s been on overdrive. This is it, it cries! You have control over this part!
Unfortunately, as I keep being reminded, that’s only partially true. I can make all of the appointments and backup plans. But I can’t make a surgeon agree to operate. I can’t order my cancer to stop spreading while I’m off chemo waiting for someone to agree to and get me into surgery. Today I got one of winds I was waiting for. My MRI scan results showed that my liver metastasis has spread during the past two months or so that I have been off of systemic chemo.

Cleveland has shifted to plan A. Getting one of these surgeons who won’t operate to agree to advocate to get me into a trial is plan B, asking for a more aggressive chemotherapy approach in a full force attempt to attack both liver and peritoneal mets is plan C.
But I can’t MAKE any of those things actually happen.
I’ve always been a strong INT with a weak slant toward J and P depending on the day or subject matter. I will let you all be the judge:
https://www.verywellmind.com/intj-introverted-intuitive-thinking-judging-2795988
https://www.verywellmind.com/intp-introverted-intuitive-thinking-perceiving-2795989
But Myers-Briggs categories are limited. The whole story is more complicated than that. Like one of my tumors, a slow and subtle transformation has been occurring- molecule by molecule- beneath the surface. As these mutations multiply and grow, how long will it be before they begin to change me? Can they reach those core parts of myself that I never thought could be changed?

Let’s take intuition. I first referenced this in my post titled, “things broken.” An intuition that something wasn’t going to go right. An intuition that has been around since just before we learned of the metastasis to my liver.

Lately, I am thinking that it’s been around longer than that. I just haven’t been listening. “On this day” reminders from my journal have been haunting me lately. In addition to the one I quoted a few blog posts back (where I wonder if I will end before I begin) this one popped up recently:
March 11th, 2018-

It seems that I am nearing a few peaks in my life. Nearing 40, and nearing the end of (a project I’ve been pouring myself into at work). I have uncertainty about what comes in the “after.” I have a feeling that things might end up okay, but the unknown is terrifying. I am approaching middle age and confronting my past at the same time. I have unprecedented anxiety, emerging grey hairs and a fear of the unknown of what might be going on behind the scenes. What does this all mean? I have always felt that there is a higher purpose waiting for me. Does the path I am on 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 a health event pending?
Six months later I was in the hospital getting handed a biopsy report on the tumor they removed from my colon.

Of course, around this time last year I was feeling pretty beat down. Not just psychologically and emotionally, but physically as well. I was blaming the physical symptoms on the psychological ones. Reading this entry, I realize that I sensed that there was something wrong with me beneath the surface and that dark days were on their way.

But I wasn’t listening. I am learning a lesson far too late.

And it’s moving beyond simple intuition. Methodical, rational, logical Heather is beginning to see clues, even signs, of something greater at play. Dare I say these signs are spiritual? Is this what happens when someone gets up close and personal with their own mortality? Is this the natural consequence that comes when you don’t know how many days are left, but know that they are limited?

My dreams have been more vivid and emotional, but I often can’t remember them on waking. I am just left with the feeling of intensity.

For several years, we’ve had house cleaners come every two weeks. My housekeeper (who is also a pastor) asks if he can pray for me. I say yes because I think that he means at church. However, before I know it, he is placing his shaking hand on my forehead asking Jesus to take away my cancer. “I pray for a lot of people in my church with cancer” he tells me, “and they don’t have cancer any more… but you have to believe (he points to the sky).”  Anyone who knows me at all, should probably be able imagine how awkward this moment was for me.

This morning YouTube decides to slip into my mix the video for Mumford and Sons’ “Beloved,” and I realize that it is about a boy seeing his Mother on her deathbed. In the video, he imagines that she wakes up, and they run around having one last day together before they return to the hospital and she flat-lines. I run to the bathroom and let loose the flood of tears and sobs. Fuck you, YouTube.

I go out for a walk to the park near my house, and find myself staring at the reflection of the sun on the water. A thought echoes- seemingly from nowhere- This is God, and he is with me. This begs a very good question- where is Heather And what has cancer done to her?

It occurs to me that a spiritual side of me has always been there. I just haven’t been listening. It’s been buried under busyness. It’s been buried under hurt. It’s been buried under cynicism.

No, this doesn’t mean that I suddenly believe in the man in the clouds. Or the bible. Or in Jesus as anything other than a historical figure.

When it strikes me that God is with me, it is far more abstract than that. It’s the warmth on my back. It’s the sound of quiet, mingled with birds chirping. It’s the beauty of the sun on a rippling creek. It’s love. It’s always been love. I just haven’t been listening. But I feel it now. In every gaze from my husband. In every kiss from one of my kids. In every hug and kind gesture from my friends.

On some level, I already knew that I was getting that phone call telling me my liver mets were spreading before it came. It was a setback. Another suck to add to a mountain of sucks. I’ve been sad today. But I haven’t fallen apart.

I think that I’m learning that the waiting place is not as useless as Dr. Seuss imagined. It has its time and place too. I’m learning that sometimes a sprained ankle is your body’s way of forcing you to stop charging forward.

I think that I’m learning that I need to take a breath, pause and listen; to discover where this next wind will blow me.

I’m on my way to God don’t know or even care
My brain’s the weak heart and my heart’s the long stairs
My heart’s the long stairs

Inland from Vancouver shore,
the ravens and the seagulls push each other inward and outward
Inward and outward

In this place that I call home
My brain’s the cliff, and my heart’s the bitter buffalo
My heart’s the bitter buffalo

We tore one down, and erected another there
The match of the century, absence versus thin air
Absence versus thin air

On this life that we call home
The years go fast and the days go so slow
The days go so slow.

Modest Mouse, “Heart Cooks Brain

• Societal Expectations
• Rules, norms, or protocols
• Authority, power, or oppression
• Logic/reasoning
• Emotions (especially fear, hope and love)
• Inspiration/Drive
• Intuition

I had a course laid out before me.  I was going to get a liver resection, and possibly some other interventions depending on what my surgeons encountered.  I knew that the seas on this path could be painful and bumpy, but I was ready for them.  What I wasn’t expecting was that the ship would end up stopping, with guidance to change direction altogether.

When I woke up, the message I got was that there was no longer a charted course that would lead me into surgery.  That course we had planned on was a longer one, one which would lazily meander around many more islands and options to come.  The course I woke up to was a straighter course.  Fire up the engines, make a sharp turn into chemo to charge quickly and efficiently through toward my final destination.

On the day of my intended surgery in Cleveland, authority has stepped in and told me to eat my green beans and go to bed like I’ve been told.  “The peritoneal metastasis is too widespread. I’ve never seen anyone take on that much.  I’m sorry.”

They want me to comply, but I HATE green beans.  And dammit, I’m just not ready to go to bed yet.

When the surgeon calls me the next day he offers another solution.  “I can offer you surgery with HIPEC, but not a full resection.  And I’m not sure that it will provide much of a benefit over going back to chemo that will be worth the time for recovery.”

My intuition (spidey senses?) tells me that “Dad” is feeling guilty about making me those green beans to begin with.  After all, he had promised me something different.  Something happened I wasn’t privy to while I was unconscious.  I suspect that my HIPEC surgeon was the impetus.  Either he didn’t want to take on such an involved surgery that day, or he didn’t feel capable, or they over-promised what could be done without discussing as a team.  Or maybe they forgot to make sure they gave me the paperwork to sign to authorize the conditions that would turn on HIPEC (this is my latest theory).  Whatever the cause, it led to the order of green beans and bedtime as a rushed reaction.

Will he ever admit to it?  Of course not.  He can’t call me up and offer the same surgery a month later, because then I would know that they screwed up.  So he’s going to tell me that I can eat a half portion of green beans and stay up a half hour before bedtime. But don’t blame me if you feel tired in the morning. I warned you.

When I fly out to Baltimore, I get a dash of hope.  The same cell phone pictures of my mucinous metastases that were used as scare tactics in Cleveland are met with “that actually isn’t that bad” by this HIPEC surgeon.

I visit OSU the next week and they are firmly on the green beans and bedtime protocol (we can’t resect your liver if there is also metastasis to the peritoneum) but the surgical intern tells us that the HIPEC surgeon’s notes- which I haven’t been given access to- calculated my peritoneal cancer index score at a 12.  HIPEC is considered by most surgeons to be an option as long as the number is under 20.  I remember again the words on the day of surgery.  “The peritoneal metastasis is too widespread.  I’ve never seen anyone take on that much.” 

Well, that may have been what the HIPEC surgeon told you, but it isn’t true.  This could be why you offered me a different surgery the next day when I asked about my PCI score.

Baltimore is willing to operate on both the liver and the peritoneum.  We met with a surgeon who has devoted 30 years to HIPEC, who is willing to take on tough cases, and who isn’t afraid of my peritoneal disease.  The problem is that my liver disease might be too much.  He initially even said that a full resection could be done, but dialed that back significantly in a phone call later.  We will see what the conclusions are when we meet with him again.

So next week, I get another MRI; another laparoscopy, another surgical opinion that will more likely than not lead to disappointment.  In the meantime, I’ve rescheduled my Cleveland surgery for two weeks after next week’s laparoscopy in Baltimore.  I’m pushing forward with plans A and B in play.

Right now, I have a surgery planned for April 4th in Baltimore.  I have a pre-surgery appointment scheduled that same day in Cleveland.  I am courting two lovers.  I’d prefer the new one.  The one who didn’t lead me on and then shut the door in my face already.  But if he turns me down?  I still prefer him to chemo. It is a dangerous game.  Part of me is worried that both will fall through.

Would you do this if a million dollars were on the line?  What if it was worth MORE than a million dollars on the line?  Would you do it if YEARS of your life were literally at stake?

The truth here is that- at this point- no matter WHAT I do I am taking a risk.  HIPEC surgery is brutal.  I’m looking at losing my uterus, and possibly also having my bowels redirected into a permanent ostomy or ileostomy.  Then there is that whole “washing my insides out with heated chemo for 6 hours” bit.  I’m also looking at a minimum of two weeks in the hospital and probably 50-60 days after surgery before I can get back to systemic chemo.  During this time, my cancer could spread to another location, or some of the surgical progress may be undone.

But if I DON’T take a chance on HIPEC surgery now?  I am facing the strong likelihood that systemic chemo- which is usually not very effective on peritoneal mets- will do nothing to reduce the metastasis in this area.  If a new line of systemic chemo doesn’t work, the peritoneal disease will quickly reach a point at which ALL chances for HIPEC are off of the table.  And the peritoneal disease will most likely kill me quicker- and more painfully- than the liver disease would.

So here I stand, in the waiting place.  Here, in that “most useless place” I wait for another MRI and another surgical opinion.  I wait to see whether Cleveland will stay on the table as a backup plan.  I wait for these “winds” to tell my sails which path I must take from here.

The “winds” of my heart say surgery, and have told me to push for it, leading to possible, but risky options.  But the logic and protocols of the authorities I am depending on are even greater forces.  And they are setting me up for another possible crushing defeat.  As the lines in the opening versus allude, “My brain’s the cliff/ My heart’s the bitter buffalo.”