2018 October 2: Ghosts

Yesterday morning, I awoke and considered the day ahead: an Oxaliplatin infusion this afternoon, the first one in almost five years. I wondered briefly if I would see my friend Madeline at the cancer center - a mental image of her, smiling her little Mona Lisa smile at me (she had a whole wardrobe full of smiles, just as she had a closet chock full of fun clothes) from her infusion chair as we sat together, wafted up and forced me to do a mental double take, because I won't see Mad at infusion. Or anywhere else. She died on August 22 from complications of colon cancer. She was 41. 

I tucked Madeline into my heart and head as I prepared for my day, knowing that her many years (she lived with CRC for over five years) of pushing back against this horrific disease with every medical option available to her would help me keep my perspective when I felt like whining. This woman exhausted all of the FDA approved treatments and then moved on to clinical trials, which are no small undertaking, especially when they are Phase I or First in Human trials, as several of hers were. We were still becoming friends, really, when she died. But I had seen enough of her fight to know she had a reservoir of deep courage and an extraordinary sense of duty - to herself, yes, but also to her family and her loved ones, to her colleagues. To science. And always, always to the community of other CRC patients. Anyone who willingly continues with treatment after winding up in the hospital following nearly every infusion is in it for reasons most Americans never even have to confront, much less consider and then embrace.

The last time we saw each other, she was in the hospital one final time, waiting to be released to hospice care. We both knew that there were only a handful of days left for her to live. “And the crazy part?” she remarked at one point, “is that I feel totally fine right now!” Which made us, I’m not sorry to tell you, both break into peals of laughter. I was relieved that she still found things funny - her  sense of humor and appreciation of the absurd was what drew me to her when we were first getting acquainted. But I soon realized that Mad was full of lessons for me that day. Do you know what she asked of me, in response to my query of how I could support her in her final days? “Just being here’s is enough,” she said at first as we held hands and I tried like hell to keep from crying. And then she paused, and thought for a moment, and said, I want you to tell me how you’re doing. How everyone [in the CRC community] is doing. I want to hear that you’re still doing well.

In the most grievous of moments, what she reached for, what she politely but clearly demanded - was  life. Hope.  She wanted to know which meds were working for whom, how I was feeling, what people were up to in our community. How the daughter of a mutual friend who had passed was faring. Later that day, remembering that moment honestly brought me to my knees. How do you respond to such an astonishing overture? To such a pure and beautiful moment in which someone’s true spirit steps through and shines right on you? That moment was, I’m convinced, a most glorious and full expression of Madeline. To anyone who falls into the trap of saying people “lost their fight against cancer” I offer you this image: does she look or sound defeated to you? Definitively not. She was full of life. The best I can do to honor her life so fully lived is hold the moment she gave me in my heart and in my hand, turning it now and then and gazing at it with awe. And also share it out to all of you. There is so much beauty in the world - and so much that I don’t understand.  Moments like the one Madeline gifted me make so very aware of both of these mysteries.

So Madeline slipped in with my other necessaries: my supplemental oxygen and my book and my nun finger puppet and my favorite anti-bacterial handwipes, because if I've learned one thing in the last 5 and a half years, it's how to pack for a trip to the infusion clinic. Then  I traipsed over to the hospital, by which I mean I climbed into the car and allowed my husband to ferry me over to the hospital and then had him stay with me in case I felt sick, sad, lonely, bored, or scared (all of which usually happen at some point during this particular type of outing). Like I said, I know what - and who! - to bring (take?) with me!

A surprisingly quick but extremely chilly visit to the lab for bloodwork kicked off the afternoon, and then I checked in at the infusion center and we settled in for the wait that always feels endless but is usually - and was yesterday - only a little over an hour (had to have the right levels of WBC, platelets, creatinine, liver functions, and a couple of other things before getting the go-ahead for the infusion). After the all-clear sounded, I was tagged and taken back to... ooh la la! A private bay! So luxe. Whether I have five years of infusions to thank for that or it merely is that Monday appears to be a slow day for infusions, I'm not sure. Now that I stop to consider it, It also could have been the bad cold I had last week that gave me the extra leg up, since no one wants germs... In any case, Nick and I got squared away, which means he sat down and continued tapping away on his computer (he was working remotely) and I scratched around like a pupster trying to find that perfect spot on the bed before flopping down.  I asked for the requisite warm blankets and fluffy pillow and sadly discovered  that the reiki volunteer had just left for the day (pro-tip: don't deprive yourself of the cancer perks!) and then waited some more, because infusions take forever. There are pre-meds that must be administered on a certain timetable, which is convenient since the drug you’re actually there for has to be made to order after you've been approved for infusion. And then the infusion itself takes time - two hours of time, in this case. Altogether, I was at the hospital for about 5 hours, which is a kind of exhausting day, fluffy pillows and cancer perks aside. 

I had every intention of writing and posting my blog while hanging out at the hospital, but all sorts of ideas and thoughts and things kept popping into the draft, so I had to tease everything apart in the end and start over.  I think people read blogs and sometimes assume that they're just a brain to fingers unfiltered journal entry that (sometimes) turns out to be decent reading, but for me personally, that's definitely not the case. I buzz around and write and let ideas percolate in my head and on the page, and then I revise and repeat the process a couple of times. Eventually, I usually (but not always!) hit publish. Sometimes, this process takes hours. Other times, it takes days or weeks. At my core, I'm a writer, and I understand writing as a craft and an art, and know that it takes effort and dedication and, well, work. Good work and welcome work, but work all the same. Work that can sometimes feel daunting when I feel barfy or exhausted or mentally blank, and so I stop working and curl up in my bed. But then I can't feel my fingers after an infusion and I'm reminded that feeling tired and whatnot really is no excuse, so the next morning I rouse myself and flex my tingling fingers and am grateful to be alive and have fingers that mostly work and so I get back at it with gratitude and maybe a little guilt (or a lot, because once a type-A personality AND raised a Catholic, always both - even if you're in recovery from each due to VERY DIFFERENT REASONS). This is how all writing happens in my home these days. Work, thought, effort, excuse, procrastination, pep talk, work...so I'm about the same as I've always been when it comes to writing, anyway, and I'm right on target with the rest of the world's writers, judging from their very active Twitter feeds and also the memoirs they wrote, perhaps before social media swallowed them whole - I am just saying, maybe a little less Twitter, kids, and which I've read when I'm not scrolling through Twitter! Ah. Maybe less Twitter all around. Point taken.

Talking to myself is also par for the course and has always been. I'm sharing that on purpose, as part of my ongoing effort to help you peek behind the scenes of unreal social media realities and see, well, at least a more genuine (if still carefully curated - but that's where the craft comes in, see?) reality. Sigh.

Hours passed, and I was finally in the middle of the actual infusion, and starting to feel pretty face to the wall-ish, as one of my favorite authors once wrote, so I put down the blog entry and closed my eyes and napped a little (and drooled a lot, if I'm being candid, which apparently I am). Then I stumbled out of that place and came home and got into my cozy bed and hung out with my kids and had soup and thought about writing some more but instead sat back and thought and tried to make sense of what I had already written, which led me to thinking about ghosts. 

I already shared my first ghost of the day with you - that tiny little snippet of Madeline as she lived and also a whisper of her remaining with me now, in my thoughts and in my heart. The next infusion chair ghost that came to me, though, wasn't of a person who has passed - it was of me. The younger, scared and hopeful me of five and a half years ago, settling gingerly into an infusion chair for the very first time, about to be filled full of toxic sludge in the hopes of killing enough cancer that I could have surgery to remove some of it. The dazzling and terrifying feeling of living on the knife edge of life and death that, in all honesty, has become a part of my everyday life, was so new, so suddenly close that I could barely take a breath back then without the agony of wondering if it was about to be my last.  I struggle to share how it struck me: I felt it in and around me like a hard rain, or like that clean, immediate clarity that deep physical pain brings before it closes in and engulfs you. Do you know what I mean? Can you feel it, too? Even a little ghost of it, on your skin and in your heart? 

I grieve a little for that younger me. For all that I was about to embark on, all that I had yet to learn. For all the fear I felt, and the terrible anticipation. I want to reach back and reassure her that her story isn't even close to over, and it's been half a decade now. But I also want to stroke her lovely hair and kiss her soft, wrinkle-free (okay, okay - LESS wrinkled) forehead and clasp her completely functional and beautiful fingers in my older and today, anyway, painful and tingly ones.

Younger me and my family, finding our way forward, October 2013

And it occurred to me that writing this blog really is a way of making good on all that I've encountered, for better and for worse, in all of the days and weeks and months and years since my diagnosis. I've long thought about how these posts - and other writing that I've done and continue to do - may well be my most lasting individual legacy. What writer doesn't think that? What artist doesn't make art in part because of a deep conviction of needing to share something now, and that what is shared will continue to be relevant and meaningful in the future? (Total aside, but all writers and fellow artists really are optimists, no matter what they actually tell you. I'm convinced of it.)  But the idea of being able to reach back into the past - that idea knocked me back a bit. And if I carry it through to its logical conclusion, I also suddenly recognize that I hope very much that other cancer patients read my words and find solace and hope in them. Because there can never be too much of that, especially in the early days and months of diagnosis, when you're still finding your feet. I hope that each of you is the early me, and together we'll find that there's beauty and hope and a full life ahead even with cancer, and that our stories have barely begun. And I intend to look back at this version of me in another five years and say, oh girlfriend! You were so right. (Because let's face it: everyone loves to be right! Am I right? You know I am. I won't make you say it.) 

So, in summary: here's to our ghosts and what they teach us. And here's to living with them in our hearts and carrying them forward into the wide and unexplored world ahead. Happy October!