On being cancer free in a pandemic

26 years ago yesterday I woke up at 4:30 a.m., put on my rattiest pair of jeans, and went to a specialty hospital to have surgery. I had a mass in the orbit of my left eye. I had been assured it was likely benign, but they couldn't confirm until it was removed. The procedure for a biopsy was the same as for excision, so there was no reason to not just have it taken out. Besides, the mass was growing pretty quickly and I was starting to look like Marty Feldman's cousin, let alone having some unsettling visual problems, like partial blindness in my left eye and diplopia.

About 12 hours later I woke up in recovery, pushing the nurse away as she adjusted my oxygen mask. I looked like I'd been badly beaten, but was assured everything went well and I would heal quickly and easily. There had been some alarming moments in the surgery, but I was okay. That night in the hospital, a nurse named Steve? Bill? sat next to me and held my hand when I was afraid. I went home the next day.

A few days later I went back for a check-up and biopsy results. That was when the doctor told me that the mass wasn't benign but a fairly rare and (at the time) not well understood malignancy. Cancer. Long story short, there was some rigamarole about next steps, but I was fine. I still am. Some good stories have come out of it and I've learned a few things.

A year later, 25 years ago, I threw a party, my re-birthday. I kept that party up for ten years then decided I'd had enough and didn't need to do it anymore. I would do it again in 10 years for my 20th re-birthday.

Twenty years later, April 18 was 21 days after Kevin died from cancer. I didn't throw a party.

In all honesty, now I don't really remember to notice the day for my own sake. I'm reminded by something about the Oklahoma City bombings, which occurred on April 19, 1995 (remember when this kind of thing seemed impossible?) or, while I still lived in Boston by the Marathon or Patriots Day. If anything, when I did remember, it became another trigger for grief because I survived cancer and Kevin did not. Mostly it's just another day, which is probably good.

This year is different. It is, of course, different for all of us and in so many ways. Some of us are just learning about grief and trauma, others recognize some of it as a familiar ride. For all of us this is unprecedented.

I woke up yesterday not thinking at all about the date. Something was nibbling at me, something I should remember. At some point, I think while Charley and I were walking, I remembered. Oh. Right. Today I am cancer-free.

I'm not sure what the larger point is here, other than wanting to note it and recognize that against the greater backdrop of global grief and loss, it is both very small and not small at all. I keep thinking about A Blessing for the Wedding by Jane Hirschfield and Elizabeth Alexander's Praise Song for the Day, both poems about the ordinary-ness of the extraordinary and the extraordinary-ness of the ordinary.

Hirschfield reminds me that living and dying happen all the time, that there are unknown joys and tragedies every single moment of the world. So it is with my own cancer experience, with loving and losing Kevin, with loving and losing so many, with this moment when we are all suspended in time between life and death, staying home to stay safe or struggling to breathe.

Today when someone you love has died
     or someone you never met has died
Today when someone you love has been born
     or someone you will not meet has been born

Every single one of those moments matters whether or not they impact me directly.

It is Alexander who comforts me. I wish I could share her words with my 26 year old self, who was so very scared. I don't know if they would have helped then, or if they will help now, but

I know there's something better down the road.
We need to find a place where we are safe.
We walk into that which we cannot yet see.

Say it plain: that many have died for this day.
Sing the names of the dead who brought us here,
who laid the train tracks, raised the bridges, 

picked the cotton and the lettuce, built
brick by brick the glittering edifices
they would then keep clean and work inside of.

Praise song for struggle, praise song for the day.
Praise song for every hand-lettered sign, 
the figuring-it-out at kitchen tables.

Today I am still here, amidst the certainty of death and loss, praise and courage, the un-noticed moments that compose our lives. Today I am 26 years cancer-free, half my life passed ahead of that frozen moment. I did not know then what was to come, all of the love and fear and strangeness and wonder. I still don't know. None of us do. But here we are.

Be kind to yourself. Be kind to others. I love you all.
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(c)2019 Laura S. Packer

And the horse it rode in on

Content warning: 
This post contains harsh language. I am angry and sad and I use four letter words. For those of you looking for my usual thoughts about grief and returning to life, this week I need to write about something else.

David Bowie died from cancer this week.

So did Alan Rickman. I'm sure there are others of whom I am not aware. Some are likely people you know and love.

This past Monday I had my bi-annual MRI to make sure the cancer I had at 26 has not returned. I was in the same facility where Kevin had his chemo, where he had to use a wheelchair because he could no longer walk more than 15 feet and where we briefly thought there was some version of hope.

This past Monday was the anniversary of the death of my new man's father, lung cancer.

Tomorrow, Saturday, is the third anniversary of the death of another friend, pancreatic cancer. Early this week was the anniversary of another friend's mother, glioblastoma.

And on this coming Monday it will be two years since Kevin, my sweet, strong, smart, amazing husband, was diagnosed with pancreatic cancer.

It's everywhere. Cancer is fucking everywhere. 

I can only think it's in the water, the air, our food, clothing and very cells. I can only think it's waiting for us all, the punchline to some terrible joke of our own misbegotten humor. And yes, I know the mechanisms so I understand that yes, it is technically waiting for us all. I am not interested in recommended cures or preventatives at this moment, nor am I interested in theories about who is responsible and why. Right now I am angry and I need to rage. I held my anger in check while he was ill because it wouldn't have helped. Since his death I have been careful about what anger I have vented in front of witnesses. Right now, in this moment, at this writing, I am angry.

Pancreatic cancer used to be rare. Maybe it was rare because by the time it's found it's typically everywhere so people didn't know it was pancreatic in origin, but it wasn't this common. It's about to displace breast cancer as the third most common cancer in the U.S. It is arguably the most fatal and yet still research is underfunded because it kills so quickly there is little profit in prevention or cure (1). 

When Kevin was sick and fighting it was very hard to not see the cancer as having some kind of malevolent intelligence. No matter what we did it snuck around us and had a more effective counter move. It was so fast. It was so wicked. I know, it has no innate intelligence but I'll be damned if it didn't seem like it did.

None of that really matters. What matters is that someone I love/d more than my own self was eaten alive by this demon. What matters is that someone you love was, too. 

Such a waste.

Fuck cancer. Fuck the culture that teaches us that it's better to smoke and to eat unhealthy foods than to love ourselves enough to take care of our bodies. Fuck the greed that says poisoning our environment is worth the risks. Fuck the mindset that says the treatment or prevention must make back the cost of research and development, never mind how many lives it might save.

Fuck cancer and the horse it rode in on (2). Today I am angry and sad and just needed to say all of this. Because I couldn't save him. Because even with all the good in my life, even with new love and hope (the new does not replace the old) I miss Kevin with a ferocity that tears me open and leaves me empty. Because cancer is the mother fucker that stole him from me. Because sometimes rage is the best we can do.

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1. If you'd like to donate towards research, early testing and treatment I recommend these organizations: Pancreatic Cancer Action Network (which is more patient focused) and The Lustgarten Foundation (which has more of a research bent). For what it's worth, I have the Lustgarten Foundation set up for my Amazon Smile page.

2. I know many people reading this will have lost someone to something other than cancer. I am in no way minimizing your loss and pain. I'm just expressing mine. Thanks for understanding.

Physics

The cancer journey is a hard one. (Yes, it's a platitude, but it's no less true.) It strips away everything it can take.

It strips away the future.
It strips away strength.
It strips away faith.

I have been struggling to retain faith in something, hope in something, as Kevin walks this hard path. I keep coming back to physics.

When I was younger I loved reading popular science books, and especially books about physics. I retained some of it and find that now it gives me hope. If my interpretations are wrong please keep it to yourself, let me find comfort where I may.

• The butterfly effect. Tiny actions may have incalculable results. Leading to -
• The observer effect. We change things by observing them. We may even change things by thinking about them. The mere fact that hundreds if not thousands of people are thinking about and praying for Kevin may still have an unexpected, amazing effect. Even if it doesn't, all of that good energy will change those who are holding him in their hearts and ensure that he is always here in some fashion or another. Which brings me to another other law of physics I love.
• Energy can be neither created nor destroyed, it can only be converted into another form. All of the energy that went into making the stars, the earth, each and every one of us, is still present. The energy that existed in the forms of those long dead is still here. Every bit. So when we lose someone their energy still exists, just in a different form. Maybe they are now part of an ocean wave or a bit of light headed off to explore new worlds. But their basic components, at the most basic level, still exist.

More than these, I remember the law of physics I learned when I was a young teen, from those masters Lennon and McCartney. This one gives me the most hope of all.

• And in the end, the love you take is equal to the love you make.  Which means, no matter what, Kevin is here now in a far greater form than his body and will always be here. You will remain, too. And me. The love is not lost or destroyed, it can only grow. The more we love, the more we are.

And that's really all I need to remember, to help me retain the future, strength and faith.

(c)2014 Laura S. Packer

p.s. Yes, I have read the wonderful NPR column by Aaron Freeman. I found it after I started pondering physics. If you haven't read it, you should.

Asking for help

Sometimes the world gives you light in darkness. I have been overwhelmed by kindness as Kevin and I travel the pancreatic cancer road together. I am so grateful for all of it, from the cards to the prayers to the help offered over and over again.

I cry with pain and gratitude each time. I hate that we need this, but am so grateful it is here. Help helps.

One of the most challenging parts of this adventure for both of us is that we need more help than ever before. Whether it's help around the house, getting places or something else, we both have a greater need than we have had since we were tiny children.

Some friends recognized this need and have put together a fund raising page for us. They asked our permission and launched a youcaring site, so we can raise money to pursue treatment for Kevin that isn't covered by insurance (nothing too far fetched, but things like vitamin C infusions, Chinese medicine, acupuncture, massage, etc). They wanted to ensure that money wouldn't be a barrier to his care, to his kids visiting or to my health through this journey.

It was very hard, saying yes to this, until they reminded us that there are so many people who love us and so many people who want to help, this gives everyone a way to contribute directly to helping Kevin.

If you'd like to donate we would be humbled and grateful. If you don't want to donate, that's okay too. If you can help spread the word please do. Efforts like this rely on letting people know they have a chance to help.

Here is the link. Anything you donate will be used to help him. I promise, no sneaky luxury trips to the Azores or donations to dubious causes.

Thanks. We love you all.

(c)2014 Laura S. Packer

Roller coaster

I wrote this last night when I was feeling very, very sad. Today is a new day, but I wanted to post it anyway, in the interest of honesty. These feelings are part of this journey.

This is a self-indulgent post. Please skip or read it kindly, knowing I am doing the best I can.

Kevin tells a great story about taking a friend on her first roller coaster ride. While that story isn't about me, he also took me on my first roller coaster ride. I loved it. I loved the dips and turns, the g-force thrills.

I do not love this roller coaster. I do not love the emotional pummeling pancreatic cancer is giving us. I do not love the fact that I am struggling to retain my emotional stability, my momentum, my intellect and my integrity all the time. I do not love that I write something meaningful, something I believe, and ten minutes later I feel like a liar because I just can't live that way in this moment, that in this moment all I want to do is howl.

Everything is the stomach-lifting surge right now.

And even with that, I don't want the ride to end, because it is at least the ride. If we are screaming together we are still here together.

I may never ride a roller coaster again.

(Please bear in mind, I don't feel this way all the time. But I do right now and it feels dishonest to deny it. Thanks for understanding.)

(c)2014 Laura S. Packer

Redefining "Happily Ever After"

When my beloved and I first became an item 15 years ago, I told him that I wanted happily ever after. That led to a lot of discussions into the nature of this state. He was afraid I expected a fairy-tale romance every day when in fact I meant simply that I wanted a chance at happiness every day. Or every day happiness, with all of its irritations. Or at least the opportunity to work side-by-side and see what we could build.

For 15 years I have had that. I am very, very lucky. And I had every expectation that I would be able to continue this version of happily ever after for years to come. After all, in fairy tales happily ever after means at least for a really long time.

On January 18th that changed. My beloved was diagnosed with pancreatic cancer. You can read about it here and frankly in just about every post for 2014 to date. If you want to know how he's doing go here. Now, just over a month later, the shock is wearing off and I'm beginning to think about how I manage in this new normal. What does happily ever after look like now?

I don't have a good answer for that yet.

I do have some ideas of what happily ever after is becoming. This is subject to change, of course, but it might be useful (it's at least useful to me) so here they are.

• Ever after means something different now. Each morning I wake up and try to remind myself that I have today. None of us are really guaranteed anything beyond this breath; I am just in a position of being more aware of that than most people. Today can be a kind of happily ever after.
• The happily part is different now. I used to take great joy in the every day pleasures - going grocery shopping together, laughing until we couldn't stand, stuff like that. Those pleasures are changing now. I'm looking for smaller grains of happiness and learning to cherish them. Holding hands. The moments of clarity through medication and pain. Watching him take a small bite of something and remembering, however briefly, that food can be good. Knowing he is finally sleeping well.
• Happily ever after now means a different kind of work together, different problems to solve, different understandings of time. But it still exists in glimpses I will not deny.

There will certainly be times when I can't find light, but to deny what happiness there still is in this stressed, painful, uncertain place is to submit to illness too early. There is still joy. There is still a future, though it may have been redefined. There is still a kind of happily ever after.

I know this may sound like I'm denying what's happening or as if I am a pollyanna. I am not. What I am is one person, standing witness to what has been and what will be, and reminding myself that what happily ever after really means is right now. This moment. I am reminding myself that even in the dark, even when I am at my most scared and desolate, happiness can be found in difficulty and that ever after is all any of us ever have.

(c)2014 Laura S. Packer

Learning to accept help

I have always been a stubborn person. My parents tell a story about how, when I was maybe a year old, they were busy with a task and couldn't pay much attention to me. Apparently, they leaned over my crib and told me they would be with me very soon, something a baby might not have the capacity to understand. I started to cry as soon as they got to work, because I wanted their attention. They completed their task as quickly as possible then came over to me. I had stopped crying. And I would not look at them. I turned my face away no matter how sweetly they cooed. It is my first recorded sulk and moment of stubbornness.

I am still a stubborn person, though now I try to temper it with thoughtful actions and analysis; I'd like to think I am a bit more understanding of the world and its distractions than I was at a year old. But there are some things that are very hard for me to do, places where I get my back up. Accepting help is one of them. I want to solve my own problems and create my own solutions.

The last three weeks and the coming months are a lesson in learning to accept help. Kevin is learning this because his body requires it; I am learning it because, if I am to help him, I need to accept help myself.

And help is coming out of the woodwork. I am amazed, overwhelmed, astonished and honored by how many people have offered to help. Kevin's kids all came to visit. Friends are flying in from around the country to help him once he comes home and to make sure I have support. Work friends are helping with yard work. Neighbors make sure the papers get picked up and bring me food. We are being cooked for, our home is being cleaned and we are constantly, constantly being reminded that this help is without obligation, it is given freely because we need it.

I wish we didn't need it...

In some ways all of this help makes me feel a little useless, but then I remember that right now? doing the dishes is less important that being with him. That shoveling the walk takes time away from talking with doctors and being his advocate. And that accepting help allows all of these people who love us an opportunity to be involved. To support, to fight back at illness. To help.

I am reminding myself over and over that right now, accepting help only makes sense. I need more help now than I ever have before, except maybe when I was that stubborn baby. I remind myself that help freely offered is a gift to both the one who receives and the one who gives. I remind myself, over and over and over again, the we all get by with a little help from our friends.

This isn't an easy lesson for me to learn. I will surely make some unkind mistakes or, at best, fail to ask for what we need. But I'm trying.

Thank you all. Thank you for your good thoughts, for your help, be it a prayer, a hope, a dish washed, an offer of a massage, a pot of soup, a ride to the airport... whatever it may be, please know that I appreciate it, even if right now I may not be effusive in my gratitude. Thank you for helping me help him.

(c)2014 Laura S. Packer

Kintsugi

By now you know that my beloved and I are going through a tough time together. I am finding myself in a continuous state of kintsugi. This is the Japanese art of repairing shattered pottery with gold to create a perfectly imperfect piece of beauty, one that reflects its history and experience. I am shattered. I am continuously repaired. I am re-formed every single day though my purpose remains firm - to help Kevin on this journey in every way I can.

Below is an excerpt of a note I sent to my family, describing how I feel. But really, the simplest way to say it is that I have become a piece of kintsugi.

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I do not know the words to describe what I'm feeling. I come up with all kinds of metaphors and similes; none are accurate or strong enough. I've said I feel like a ruined city, lifeless and abandoned, but that's not entirely true because I am thinking so hard and loving so much. My ability to cope changes from moment to moment, depending on what I'm facing, it's as though I have shattered into several Lauras. 

Shattered is a good word for it. 

There is the Laura who howls. She shows up every couple of days and makes noises the likes of which I didn't know I could produce. She is composed of grief and rage.  There is the Laura who is thinking, analyzing, figuring out how to fight. She is around in the hospital and whenever I have to strategize. She is really, really smart. I'm glad she's here. There is the Laura that believes we can beat this, that holds hope, because if I don't hold hope then the first Laura takes over. There is the Laura that knows the statistical outcomes and timelines. She keeps whispering in my ear and is, frankly, not yet useful. There are so many Lauras right now, each one of them with their own needs and voices. I suppose this isn't uncommon or even a bad way of coping with it. I remain functional until I am not, then I pick up again and keep moving on.

I hate this. I hate that Kevin is suffering like this. I hate that the universe could dare give me such love, such happiness, such hope and then do this. I am also aware that this is a deep and powerful lesson in love, because frankly that really is all I have. And I am being so well loved by people I don't even know. I counted it up and think there are probably in excess of 1000 people praying for Kevin. Maybe it means something for his health, maybe it doesn't, but it does mean that people are kind. People love. We are creatures composed of hope, believing our faith makes a difference in the face of the universe. We must hope.

I hope that whatever happens (and here the hopeful Laura and the statistician square off) he is able to make decisions that give him the best journey he can find. I hope I remain strong and functional throughout. I hope. Because I can't not. 

There are microscopic moments of grace, even now and I'm sure throughout this journey. I hope I remember to see them. If this situation won't simply become a bad dream, then I would not be anywhere but here. With him. Walking beside him.

I love him so much. I have been so lucky and, in some twisty little way, still am, because I have not forgotten, because I have had 15 years and may have more, because. I am loved and am able to love in turn.

(c)2014 Laura S. Packer

Intimacy and privacy

It bothers me immensely that this blog is going to be a cancer blog for awhile. But there it is. I write about the things that matter most to me and, right now, what matters most is my beloved's fight with pancreatic cancer. If you're looking for a great storytelling blog I recommend Priscilla Howe's. I'll get back to story eventually, but for now, this is my story.

As Kevin and I travel the cancer road together one of the things I am increasingly aware of is the way illness increases intimacy and erodes privacy. Let's start with intimacy.

Ever since we became a couple intimacy has been one of our guiding principals, not only physical intimacy but emotional. We have tried to maintain a deep sense of honesty with one another, which deepens into a more meaningful kind of intimacy. As he's become ill, that intimacy has increased. The bathroom is no longer such a private place. We've talked more about bowels than is likely wise. We have had some big, hard conversations and more are likely to come.

What's more, my barriers to intimacy have eroded. I have cried in the arms of nurses, doctors, strangers in the grocery store. I have been prayed over by people I didn't know ten minutes earlier and I've accepted their prayers gratefully even if it is a version of prayer that I don't participate in. I have been clutched to the bosoms of women I will never see again. And I am grateful for it all. These intimate acts are gifts when I need them most, providing comfort and the possibility of hope.

But too much intimacy might suggest that nothing is private anymore, and that's just not true. All of this intimacy needs to be balanced with privacy. In the hospital Kevin has been poked, prodded, examined and measured via every orifice and fluid. He is asked questions that seem intrusive and has to give the information freely and honestly, because it all has a bearing on his health. Because of this I am trying to maintain as much of his privacy as I can.

I don't go into his bags without asking. I make all the doctors - including the silent interns - introduce themselves before they can be in the room while he's being examined. I make sure he can shut the door when he goes to the bathroom and isn't interrupted if at all possible. I ask why, why, why so often that some of the doctors are now telling us why before I can even ask.

I want to ensure that Kevin has as much authority as possible over his own life as he walks this path. And privacy is one piece of agency that reminds him that he is still whole, still a man, still his own self. (Mind you, I have and will make mistakes here. But at least I'm aware and trying.)

For all that we need intimacy, we all need private time as well, especially when ill and facing the big issues. I'm honored to be the guard dog at the door.

(c)2014 Laura S. Packer