Another tour

My scans were clear.

On Monday, I had the scans. They lasted all morning, because even though the CT people were on schedule, the MRI people were not.

While I waited for the CT scan I rolled my eyes along with another woman waiting, and then we started chatting, and one thing led to another and I’d found a fellow melanoma patient. Who flies halfway across the country for her scans and checkups. She’s a couple of years farther into this than I, and I think she said that she’d probably be going to six month intervals for her scan. I thought to myself, #cancergoals I had hoped we would run into each other again, but our schedules didn’t match up. I did manage to mention this blog to her, however.

After the CT scan and before the MRI there was some of this, to break the fast.

Don’t envy me too much because I had an IV port in the crook of one arm, so this was very hard to eat.

I waited forever for the MRI. But I had eaten! And had coffee! And brought a good book! And a phone charger!

My time in the tunnel passed quickly. Except that enough time had passed between the CT scan and the MRI that the contrast dye from the CT scan had already begun wreaking its digestive havoc, and there I was on the MRI table. And so, for the first time, I asked for an update. But I’d managed to hold off doing that until there were only seven minutes left on the half hour.

Dr K had more to say about the amount of hair growing on my head than any activity inside my head. He’s a man of few words, so when he murmurs, “Huh. We’re at 23 months,” it isn’t just a restatement of the obvious. He’s quietly marveling. I have been around him enough to sense that, now.
After getting the good news, J and I kissed in the hallway and I started making the usual phone calls, sending the usual texts. How lucky I am that this can be “usual.” I know very well it could be Otherwise.

This always happens when I leave the hospital.

I do realize this makes it seem like scans day is just one long lovely meal. Just remember the whole reason this happens at all is CANCER. This spanakopita is pretty damn good, though. And easier to eat than the crepes, because by this point the IV was out.

It always takes a couple of days to get the CT scan results for the rest of my body. And it is never easy to predict what things will be like in Dr P’s office waiting area. There have been times I find it completely empty, but today was not one of those times.

Today cancer patients of every stripe sat cheek by jowl, and family members, and interpreters, and even one patients interior decorator, or at least that’s how it sounded. A very rich sick woman was going over the building plans for her house. She was literally agonizing over where the pool should go. In this day and age, her attitude is such a shock, it is so hard to situate. She spoke for a good 45 minutes about the plans, and the type of ceramic stone she likes, and her differences of opinion with the architect. And guess what I didn’t have with me today? A good book. A phone charger.

When I went back for the blood draw, my favorite phlebotomist was not there. I inquired after him, and was told he had left. Hello, wherever you are, Phlebotomist B. I miss you!

Later, when N, the assistant, took my vitals, he seemed flustered, and told me that five different doctors were seeing patients in the office today. Not all of them melanoma doctors, either. This meant that in the tableau of suffering that came to surround us in the waiting room, there were people with other cancers, including the baddest of all (pancreatic).

When a patient was wheeled in on a stretcher, I averted my eyes. But when another arrived in a wheelchair and holding a bucket in his lap, I quickly steered J to the other side of the glass partition. How dare they? I was thinking. How dare they turn my waiting area into a waiting area for REALLY SICK PEOPLE?! (Clearly I still have some more work to do before I can consider myself as having fully embraced cancer-dom.)

Into Hour Three of our wait for test results, we got a bit punchy in the exam room.

Mirror, mirror, on the wall / Will we ever get the hell out of here today?


At last, Nurse Practitioner Kathy came in. I’d passed her in the hall on the way back from the restroom, and she broke the good news about my scan to me right there. Then we went into the exam room, and with the door closed, we were able to have a bigger celebration, a bigger hug.

I had some things on my mind, though. First off, I asked for a drug holiday. We’re traveling soon, and the constant refrigeration required by Mekinist isn’t easy to achieve while en route. Last summer’s eye debacle in Italy proved that if I’m going to suspend taking one of the meds, it is far better to suspend both. My holiday was granted, after a consult with Dr P.

My next question was the one I’ve put off for two years. I was pretty sure I knew the answer to it, but a big poster in the exam room, which listed staging criteria for cutaneous melanoma, prompted me to finally just ask. “What stage was I? When? What stage am I now?”

It’s weird, right? That I didn’t have this information right at the point where my disease showed up or got more severe? But in my case, I’m not sure I needed that information back then. I felt so completely reassured by the course of treatment that was proposed to me, I didn’t seek a second opinion, and I don’t regret that now. I was and am lucky the treatment works.

Kathy was very, very careful with this conversation. I could see her weighing her words thoughtfully — one of my favorite things about her. She asked me what I understood about staging in metastatic melanoma. I told her that I had seen and read and heard enough to understand that stage isn’t all that important on its own, that response to treatment is important, and that one cannot use another person’s yardstick to measure their own progress.

Kathy seemed reassured enough by this to tell me that from the moment the disease entered my lungs, I have been at Stage 4. And that regardless of my progress in treatment, once you have been at Stage 4, you stay there, in clinical terms, forever. You can be Stage 4 with no active disease. That is what I am today.

So there it is. There is no wiping the slate clean, ever. But there is an understanding that this is not the only important thing written on the slate.

In Judaism, there is a specific prayer that is recited in public when one has survived a potentially life-threatening situation. This action I took today, it felt somehow adjacent to the impulse one might have to say that prayer. Now that we’re on the other side of it, let’s find out what it was called. So next time, we can call it by its name, if there is a next time.

I’m renewed for another tour of duty on this planet. I’m headed to a different part of the planet at the end of this week, one known as the Land of Enchantment. And I am fully ready to be enchanted.

Scanxious

That blue, though

I have scans soon. Day after tomorrow. Been a while since I had a scan double-header. I am not sweating the small stuff, like what time and where I will finally get to eat lunch on scan day (I fast before the CT scan, but have the MRI immediately after, so I may or may not get a chance to eat in between). Usually I get through the last day or two before a scan thinking only of these trivial things.

But something got tripped, a switch got flipped, and I’ve been anxious for days. I’m not sure exactly what it is that changed since last time.

It may be that it has started to sink in that I’ve had a long run of good luck on my meds, and that luck may not be infinite. It may be that I’m finally emerging as a less self-involved cancer patient, and once my eyes opened to the plight of others, they stayed open. (No more sleepwalking through Cancerland!)

Yesterday, for much of the day, I was paralyzed by these thoughts. Today, I was fairly flattened by them. Today brought an email from a correspondent of mine from across the ocean, who has been traversing a similar path, and who found me through my writing here. She is a lovely, spirited and funny young woman, who has also had to fight off melanoma multiple times since the age of 15. I have so much respect and admiration for her. And now, she has all of my healing thoughts, and prayers too, after some recent bad news. 

I’d summon all the pharmaceutical powers that be, if I had that kind of influence, to throw everything we know at her disease and make it be gone for good. I’m thinking of you, my friend. I’m pulling for you. I can still pull harder.

HMD

Food Basket’s parking lot was empty.

I should start by reiterating what I said last year.

(The red one is tuckered out from a sleepover. The blue one slumped over moments later, in sympathetic slumber.)

We’re on the road to a family gathering. Holiday traffic is bad, especially on a day as chock full of obligation as this one.

I’m all done planting for the year. I just need J to drill some drainage holes in my already-filled new planters. I’m never one to think that far ahead. But I’ll clean the dirt off the drill bit once he’s done.

It helps me, as I have said before, not to be a long-range planner. I have scans in a week’s time. Both MRI and CT. I get the MRI results immediately, and then get to twist in the wind for a couple days before I see Dr P.

But! I have things to do in the meantime, course I do. Get Young J packed for an exciting overnight trip with his class. Enjoy a visit with my mom. Attend a special event in Young A’s class. Do some translation work a friend kindly passed along. 

All the living you can do in a week. Even when the gloomy inevitable lurks everywhere you look.

Come to Me. But don’t go into the light!

I’m steadfast in my refusal to take things all that seriously.

Pre-existing conditions

My therapy awaits

I finally cried today. I’d been in the car driving for half an hour in search of a parking spot. That wasn’t what triggered tears, though. What triggered the tears, on this beautiful spring day, was the feeling that I’m suddenly so vulnerable, legislatively so. I’ve been angry since Inauguration Day, but angry in a global sense. Today, I feel personally attacked. There are no reassurances that lawmakers, with their own exceptional health care plans, can provide me right now.

My life has become a pre-existing condition, and a change in the current law, followed by a thoughtless sweep of a pen, could lead to a chain of events in which it is decided that my life is no longer worth preserving. That it is too costly to keep me around.

There are millions just like me.

I bought spring flowers for my tiny balcony yesterday. Gardening is an act I commit every spring, even though I don’t know the first thing about it. I’m getting my hands dirty today. I’m getting the job done, even though it puts me out of my comfort zone. Keeping these plants alive becomes my priority. Failing to keep them alive will feel like true failure.

Legislators would do well to follow this lead. Leaving your comfort zone, valuing life in a far more radical and tangible way than simple lip service, these things take some courage.

Today, once again, we’ll get to see who lacks it. We will take note. Remember their names.

May Daze

It is Melanoma Awareness Month. Were you aware?

I daresay I did my part for melanoma awareness yesterday, at a very special event in Dallas, Texas. There will be more on that here as it appears online. Long story short, I met some pretty great people, and I got to discuss living with metastatic melanoma with them. And, I came home with a new friend. Any day I make a new friend is a good day.

And while I’ve got your attention… we’re just over a month away from the Answer to Cancer fundraising event for immunotherapy research. Although we aren’t doing the grueling bike ride this year, we are participating in the Family 5K Run/Walk (my prediction: Young A and Young J will run, J and I will walk). And we’d really love your support! We’re in the top ten for fundraising right now. It’s not a competition. But you know, it would be fun to climb up from there… and it’s for a great cause. Thank you!

Confirmation

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Supports

Yesterday was my first speaking engagement as a Cancer Person. NYU was holding a skin cancer awareness event, which is annual. Dr. P picks a patient to speak every year, and my turn came up this year. It felt like being named Valedictorian, or something. There was a sort of graduation vibe to my being there, enhanced by the (very random) presence of an entire class of high school seniors who beefed up the audience by at least 200% (and significantly lowered the median age of attendees). What J and I didn’t know was… there was a free lunch.

Free lunch will bring people out for any sort of event, but a skin cancer event carries the threat of very grisly slides before you get access to the free lunch. Having been to two of these events now, I can say that I realize dermatologists and surgical oncologists do not show these images for sport. But neither do they consider their audiences, general audiences, who, when they see skin retracted by two little metal forks, will think, “hey, those look like snail forks, why are they using them for surgery?” It is distracting to the underlying intention, which presumably is to scare audience members off their tanning salon habits (although that certainly isn’t the culprit in my case) and get them to use sunscreen. The only slide that was truly fascinating to me (even while being truly disgusting) was an image of a stained sentinel lymph node being extracted for biopsy. My fingers were over my eyes, but I couldn’t look away, because that’s how mine must have looked, glowing blue there among the… viscera. I can’t link it, sorry. You can find a photo if you really, really want to.

I was the last speaker before the Q&A period and then the free lunch. So I sat and listened to the dermatologist (and her gross slides), the surgeon (and his gross slides), and then Dr. P, who gave a similar presentation to the one I’d seen her give a couple weeks ago. They were followed by the social worker from the cancer center, whom I’d met with a couple of times back when I was getting infusions. She gave a very quick overview of her important work, and then I was surprised to hear her introducing me.

I had been asked a couple weeks in advance to give this talk. I had started assembling a PowerPoint so I could be just like the docs, but without the gross slides. But I only had ten minutes. The night before the talk, I lay in bed and started a stopwatch and tried to speak extemporaneously. After the fourteenth or fifteenth “ummm,” I decided I had better write my talk down. It’s going to be posted on YouTube, so rather than posting the text here, I’ll just let you see it, whenever they get around to posting it. It felt good to be speaking to an audience again, something I missed from my academic librarian days. My only quibble with the audience yesterday was, they didn’t laugh at many of my jokes.

But the most exciting moment of the day, by far, though, was while Dr. P was speaking. She was talking about the amazing recent advances in melanoma treatment, and she indicated that one of her patients would be speaking later on. And she said that I was in long-term remission.

LONG-TERM REMISSION.

I was stunned. I’d been wondering for ages what to say about myself. Are you a survivor if you still take pills every day? (My feeling has been, No, you’re not.) I was familiar with the term remission. I just didn’t know it could ever actually apply to me. It was like I was Valedictorian and then they announced from the stage that I’d won some coveted award, too. It had never occurred to me to ask Dr. P what I could label myself. (In my speech, I said that from now on, I’d call myself a “long-term remitter.” That did get laughs.)

Of course, the problem with melanoma, and the reason that notions of survivorship are still so much in flux for it, is that melanoma does not behave like other cancers. It can reactivate at any time. It doesn’t give credit for time served, or time survived. People have tumors which go dormant for decades and then are suddenly newly alive. Again here, my insistence on not thinking too far ahead in life has served me well. It’s been two years since my brain tumors showed up? That’s awesome. Do I get another two years without any new cancer bullshit? I hope so. But I’m much more focused on next week, next month. On what to make for dinner tonight.

So I gave the talk, and sat on the stage during the Q&A (stupidly, because of course no one had questions for me!) but was glad because I heard Dr. P answer the question of how she’d decided to be an oncologist by saying that she had seen an illustration of a cancer cell in the Weekly Reader when she was in third grade… and decided then and there that she would be a cancer doctor when she grew up. Her mother told her she’d change her mind. I’m so glad she never did.

We went out to the hallway and got our free lunch. One of the smattering of elderly people had set her many plastic bags down at our table. She was flitting between the table and the buffet, not eating, but wrapping up lots and lots and LOTS of food to take with her. I remember this sort of thing from my time in academia — people who have made a profession out of finding and attending any events with free food and drink. This woman was congenial, though, and the only one of the food gatherers who thanked me for my talk and asked whether J and I knew each other and how long we’d been married, etc etc. It’s a nice, weird place, the conference wing of the hospital. I’d like to spend more time there, less in the CT suite.

J and I took the crosstown bus together, and he went back to work. I felt like you do after graduations, vaguely happy and ready for the future (after a nap). I got on the subway and transferred at Union Square. The train was mostly empty. A young guy sat across from me. I didn’t really notice more than that. When the train came out from underground to cross the bridge, which affords riders rare cellular service, he started making phone calls. He sounded distressed but I mostly ignored him and looked at my own phone. But when he started telling the person on the other end that he was going to pick up his children at school, and he mentioned a funeral home, and a police sergeant… I started listening. There had been a murder, and it sounded like it was the mother of the children he was going to pick up.

When we got back underground, he got off the phone and was sobbing, head in his hands. I got his attention and handed him the rest of a pack of tissues. I really, really didn’t want to engage or pry. No one else seemed to be getting involved. I told him I was sorry for his loss. When I was nearly at my stop, I asked whether he needed any money. I only had about $10 cash, so I gave it to him. He thanked me and gave me his name. I wasn’t sure why he did that. I walked home, closed the door, and cried and cried.

Later on, a friend suggested that it might have been a scam. If it was a scam, that was some gamble he made, getting himself all worked up like that, and not even being sure if he’d get any money out of it. A bravura performance. He certainly didn’t ask me for money. I offered it. Perhaps that was his art. I can’t and won’t know.

I was pretty wrung out by evening. Extremes of elation and horror will do that, especially when you live life with a constant undercurrent of imminent mortality. The sum total of what I’ve done today is, go to the gym, eat kale, and write this. Baby steps.

 

Happy birthday Mom

My mother is 80 years old today! She is too busy to see all the birthday greetings she is racking up on Facebook. After she nudged me to make my move in our latest Words With Friends game this morning (she’ll beat me by a hundred points, as usual), I knew she was up early, and we called her, and she was having breakfast before rushing out, as usual, to work. She still works, a whole lot. She may never actually stop.

I wrote this tribute to her a while back, and I hope you’ll click through and read it (and watch the YouTube link), because I feel like I did a pretty good job of capturing her essence.

I love you, Mom. I couldn’t have made it this far without you on my team. May you live to 120!