Remission

Well I made it. Close to five years after my last radiation session with no sign of recurrence and both the onco and I are ready to close the book on my lymphoma. Today at my three-month checkup he said I could get away without coming back for a year. A YEAR.

Which frankly caught me by surprise since I’d been expecting at least one more three-month. It must have showed on my face because he added, “What, separation anxiety?” After I allowed maybe it was something like that we settled on six months; I know how my mind works and if you give me a year away from just about anything I’ll delete that anything from memory so thoroughly it might as well have never existed. Still, while I’m in no hurry to get cancer again I’m in no hurry to forget about it either. I’ve learned too much during these years – about myself, about how the world works for those with chronic illness, about the people around me – to dismiss the experience so easily.

That these years have gone so largely trouble-free is a measure, I guess, of how well I responded to treatment, of the strength of my immune system; the onco said as much as we wrapped up today and this time I think I really heard it. But it’s also a measure of the quality medical attention I got: thank you, Medi-Cal. And of fortuitous timing, since I got through treatment well before the current administration took over and I thus started worrying pretty much every day whether my Obamacare would suddenly disappear.

Finally it’s a measure of the support folks provided me no matter whether close or distant. This was something that, life-threatening or not, might have broken me if I’d had to go through it alone. I’m glad I didn’t.

The doc doesn’t seem concerned about the cancer coming back anytime soon if ever; he wasn’t even put out when I wasn’t able to get the CT scan he ordered in time for today’s appointment, “just get it soon and let me know once you have” is what he said. My gut feeling – such a ha-ha that phrase is here because my lymphoma first announced itself by forming a tumor that tried to squish my guts – is It won’t be back, and what a relief that is. Since seeing my father die of cancer I’ve had a near-lifelong fear that it would get me too, that something malignant would someday turn up inside me when it was too late to do anything about it.

Well, as it turned out part of that was what happened and the other part wasn’t. We should all be so lucky WRT our fears. Either way I’m glad to not have to think about this at all for the next half-year. And, it appears, a good long time afterwards.

Today is five years since I was diagnosed with cancer. Or rather since the phone call from my GP saying the CT scan had turned up a mass in my abdomen, a big one, and I should waste no time in contacting the oncologist she then referred me to. Her call came in about 8PM. I didn’t get much sleep that night.

A week later a surgeon was taking a swollen lymph node out of my groin for biopsy, and a week after that I checked into Summit for my first treatment. Sometime in between I met said oncologist for the actual diagnosis: follicular non-Hodgkin lymphoma, bulky, stage 3B. Beatable, he said. That was the only word I really paid attention to.

(Republished from my personal Facebook account.)

Did a blood-draw today in prep for my onco checkup next week. This time the phlebotomist drew from the outside of my arm and I wish more of them did that. All told it wasn’t an arduous experience, just a minor pain in the ass. Which, if you remove the “minor,” effectively describes my experience with cancer so far. Or most of it.

Yesterday a friend went into the hospital for a stem cell transplant. She’ll be there a month – “in the cocoon”, she calls it – and it’s easier to focus my worry for her on how much she’s going to miss her beloved cat than how difficult this next month and the ones that follow might be for her. I don’t know if they actually will; I never got near such a procedure myself (though the onco says it might be an option if the cancer does return). What I do know is my friend is like me a very active person and I would be miserable having my activity curtailed for months. Something else that’s easier to focus my worry for her on than… other possibilities, let’s say.

3 1/2 years after treatment the story I tell of my own cancer is that it was little more than a lengthy inconvenience, that I got off light and between ACA coverage and good doctors and a healthy immune system didn’t have it so bad. The truth of that is solid enough that it becomes more real the more I repeat it to others or even just to myself. Throughout all this the stories of people in my support group have helped me understand how lucky I’ve really been. A number of those people are dead now so no, not bad at all. Right?

And this story has become so deeply etched that a few days ago writing in my journal I set down several items on my wish-list which had in the last few years been fulfilled mostly on their own and the first was, “That having cancer won’t truly fuck up my life.” Best as I can understand it, my small part in that has been to say “I’m lucky” over and over. Because as propagandists know, repeat something often enough and it becomes not only the truth but all of the truth.

Yet a few weeks ago when my friend held a get-together to explain her situation and how we could help, after it was over I was in a side-room crying: triggered not only by the honesty and determination she displayed but by how hearing another’s still-in-progress story made me face that for me it was after all actually pretty bad. That what made it bad was not necessarily the cancer itself but how hard I’d had to work, was still working, to keep fear from dominating.

The story as I tell it makes little room for how afraid I really was. How I still am, all the time. Afraid of losing family or close friends where I survive by nothing more than random chance, of the cancer returning because my luck finally runs out, of it this time being not just worse but so horrible that I wish for death the way another friend says she did at times during her treatment. The way my father did rather than go back into treatment himself. That day in the side-room was my first time admitting that fear is as much a part of the story as luck or determination or good care and probably always will be whether I tell of it or not.

I don’t know what the future holds for my friend any more than for myself. When I’m feeling strong (which despite the above is much more than not) I picture the two of us some years from now having a cup of tea and saying, Boy it got pretty hairy there for awhile didn’t it? And then laughing, because for both of us the feared worst never even came close to happening but what did instead was in the end essentially just a big pain in the ass. That’s my hope. We have medicine, we have stories and we have hopes and we need all of them.

(Republished from my personal Facebook account.)

A week after my oncology checkup I drove through the gate into Burning Man. Feeling there was much to celebrate, most of all the onco’s casually-dropped pronouncement that I could wait six months to see him again instead of the usual three. Yet underlying the elation was somberness; of the reasons I had for being at B-Man, prominent was honoring the dead. Two especially, members of my cancer support group who didn’t make it where I in comparison pretty much waltzed through.

I resumed going to Burning Man year before last after being away over 15 years. Many times during those years I assessed I’d probably never go back, that I’d already gotten all I needed out of it in the late 90s. Then I was diagnosed with cancer, and emerged from treatment determined to live more boldly where I could afford to. Going back to the Black Rock Desert I love so much to be with some of the people who’d helped me make it through fit the bill nicely.

Yet even in that act I was there as much for the dead as for the living. Two decades ago a favorite artist sang, For the souls of the departed and the renegades of love/You and me we gotta be all we dreamed of – words that instantly struck to my core, and for years I thought I knew what they meant. But I didn’t, not until experiencing and surviving cancer myself and in the process learning that for the living celebrating is as vital as mourning even if only because we can.

This year I drove through the gate with one main task for the week ahead: visit the Temple soon as possible and hang the poster I’d made in memory of Jody and Andrea. While I didn’t expect it to be easy – their deaths each hit me hard and the hitting has not yet let up – I saw it as something very necessary. My duty, if you will, as one of the living.

The next day I was part of a cancer survivor’s walk to the Temple, an event now in its 13th year with the organizer more than once referring to those walking in years past who were now not alive. It was a largely silent group that set out, the distant Temple frequently hidden behind dust-clouds only serving to deepen the quiet. With every step the poster secured to my daypack by a cable-tie bumped against me, brought along because even though the Temple was reportedly yet to open (construction delays) hope still springs eternal.

As it happened we got there just as people were first being let in, a small crowd that our group of 60-70 almost doubled. I stayed for the picture before making my way inside the structure, exposed beams open to the sky that to me resembled nothing so much as a huge heavenward swirl. I wandered looking for a suitable spot, not sure I’d find it since I prepared my offering for a flat vertical surface rather than one of angled gaps poised against the ground at a lean. Also belatedly realizing that even if I did, I still hadn’t brought means to secure the poster against the wind, not even push-pins.

Eventually instinct revealed the right place. Only then did I look at those posting memorials to their own departed; one nearby man substantially younger than me had brought hammer and small nails while another, substantially older, held a staple gun. I enlisted their help and by turns they held the poster in place as I nailed and then stapled it to the beams. Then also by turns I embraced each for long seconds, sobbing into their shoulders as they sobbed into mine, the weight of what we were doing caught up. Complete strangers though they were, in those moments I wanted no one besides them close to me.

I walked back to camp by myself crying much of the way and cried again several times in the following days. On Sunday night I went with my good friends/campmates to watch the Temple burn, only to make my way a hundred yards down the circle before slipping into a gap between people I didn’t know. Right then what I wanted was to sob silently, unobserved by those I loved, expelling in near-privacy what I could of my grief into the flames that would soon reach toward the stars.

The grief was not just for Andrea and Jody but for Rod and Debbie, Georgia and Ari, Tony and Lucy and the others I’d met in the group no longer with us. For Anne who died of pancreatic cancer in 2014 before I got a chance to tell her how much she’d meant to me during our 22-year friendship, before I even knew it myself. For my mother gone now six years and never properly mourned by me, for my father who preceded her by 36 years, for my aunt and my cousin who’d died after my mother. For the others gone during and since that death-laden year of 2016, even David fucking Bowie whose passing touched me in a way that a public figure’s never has. Grief too for my survivor’s guilt, for my loss of innocence at finally starting to viscerally understand what a random and cruel force death usually is.

I let some of that grief out, then went to rejoin my friends. Feeling emotionally raw in a way I hadn’t prepared for – couldn’t have, I see now, just as it’s impossible to truly prepare for death itself. A week later I’m still raw and expect I’ll remain so for some time, though I hope at increasing intervals. I did what I went to Burning Man to do: celebrate as much as mourn. Because that’s what the living must do, both for ourselves and for the dead.

(Republished from my personal Facebook account.)

The day before yesterday provided some uncomfortable moments when I realized I couldn’t remember when I’d last seen the lab slip issued in preparation for my 3-month checkup. My mind immediately went into panic mode: Checkup’s in five days (three business days!) and I’m going to have to replace the slip and then schedule the blood draw and it’s all going to have to be today if I want my onco to see the results in time! OMG! Going to Berkeley for the new slip and then getting the draw is going to take up the rest of the day! And so on.

Then when the worst of the panic had passed I remembered where I’d probably seen the slip last: when I gave it to the lab technician to get the blood draw required in advance of my CT scan last week. A call to the onco’s office confirmed that yes, they had the lab results already in the system. Would that all challenges faced by us NEDs could be resolved so easily, right? I can’t explain the sudden memory lapse; almost three years out of treatment I certainly can’t blame chemo brain. But things have been like this a lot lately, it seems.

Otherwise apart from the lingering fatigue I currently have few if any cancer-related complaints. My last scan of any sort was a year ago and since this one was CT instead of PET for the first time since diagnosis I take it as indication the onco thinks I’m doing well, perhaps really well. Not that I don’t believe him when he says so during my increasingly brief checkups but you know how it is: figuring things out on your own is so much more convincing. (Presuming of course your conclusions aren’t later proven wrong. I think I’m on safe enough ground here at least.)

Last month I was worried for awhile the cancer might be back because of the stomach pains that had been building for weeks. Four years ago stomach pain was the first indication something was wrong, and when I got my lymphoma diagnosis after six months of increasing and sometimes extreme discomfort their source was revealed: the 16-cm tumor growing in my abdomen was squeezing a bunch of my inner workings. Since I’d really rather not go through that again, this time I monitored the pains and eventually concluded they were different with little apparent potential to make me as miserable as pre-diagnosis. Eventually I chalked them up to a combination of diabetes medication the GP recently had me restart (no longer taking it, about to try an alternative) and anxiety resulting from switching antidepressants a few months back (in the process hopefully of fixing that too).

In any case, I told myself, the scan and checkup are coming up soon so if there’s anything awry it’ll be caught soon. And for now I’ve stopped worrying. Would that all challenges, etc.

Yet once you’ve experienced cancer, no matter how successful the treatment there’s always fear of it returning. I know from dialogue on the non-Hodgkin follicular lymphoma Facebook group I joined last year that it happens a lot more often than anyone involved would like. I’ve now been on Watch And Wait protocol almost three years and just because it’s been a smooth ride doesn’t guarantee that will continue indefinitely. Nobody knows, not even my very diligent oncologist. So at this time all I’m going to do is focus on making the most of surviving the bout I’ve already had. Oh, and keeping better track of my lab slips.

(Photo: don’t forget to stop and smell the peonies.)

(Republished from my personal Facebook account)