PET Scan Update: Not Much Change

As I sat having my blood sugar checked before my PET scan yesterday, the new fall screensaver reminded me I’d seen all the seasonal photo montages at Memorial Sloan-Kettering, starting in with the winter pictures. I think. I definitely remember the spring flowers and the summer beach scenes before arriving yesterday to find that the computers are now showing fall leaves.

I got the results of my scan today, and right now I’m not sure when I’ll stop being so familiar with those screensavers. It looks like I might see the fall scenes on a regular basis a little bit more than I’d hoped. As I mentioned before, while my first scan after two cycles (four treatments) showed pretty dramatic improvement, but my scan after four cycles (eight treatments) hadn’t shown much improvement. Yesterday’s scan, after my twelfth—and what I had hoped to be final—chemotherapy treatment, didn’t show much improvement either.

There are two areas that are showing up as inflamed—one in my chest where my trachea divides and one somewhere near the belly. Since they’re not going away, they’re going to do a biopsy surgery and find out what exactly they’re dealing with, what to do next and why they’re not going away.

Apparently, Hodgkin’s lymphoma can mutate sometimes into another lymphoma. I hope it’s not that. Or they could just be inflamed areas. I forgot to ask what that could mean. What could be in there? An actual fire in my belly? Swallowed gum? Shards of shattered dreams? Venomous words I swallowed instead of spitting out in anger, slipping down my throat and forming a poisonous mass?

I meet with the thoracic surgeon on Monday for a surgery consultation. After the surgery, I might even have to stay overnight in the hospital, something I’ve never done before. I’m a little nervous about the surgery for all the usual reasons, as well as for my irrational fears.

Before my neck biopsy in March, I was mostly afraid of saying something weird while I was being put under. Or awful. What if I just insulted people randomly while I was out of it? I collected other post-surgery stories—tales of a doctor obsessing over his colleagues seeing him naked in the operating room; a loopy teenager turning to his mom and imploring, “Don’t tell my mom;” someone trying to jump from a moving car.

In the end, of course, nothing happened—nothing I remember. I scanned the nurses’ faces for any signs of an earlier awkward interaction. Had I made any threats? Demands? I don’t think so.

In addition to my anxiety about saying something crazy, I have a new fear, thanks to watching the first episode of The Walking Dead. It’s not really a spoiler, since it’s the first episode, is it? Well, I’m about to reveal the premise: A guy wakes up in the hospital and there are zombies everywhere. (I’m still on the fence about continuing to watch. This guy’s lack of follow-up questions irritated me. How did this happen? Maybe it’s explained in later episodes, but I might watch Boardwalk Empire instead.) It’s also how 28 Days Later started. So now that the zombie thing is fresh in my mind, I have to entertain the possibility of waking up to a world of the undead.

After the biopsy, then I’ll also have the results to worry about. That, perhaps, is the scariest part.

After the meh PET scans results last time, I didn’t allow myself to be too hopeful yesterday, as I let the radioactive material course through my veins and drank my raspberry-flavored Gastrografin. I’ve always wanted to ask if there’s a flavor other than red raspberry or if it’s labeled to give the illusion that there are choices. A storyteller I saw once says it tastes like “robot piss,” but I don’t know what that tastes like. I think it tastes kind of like Faygo red pop in that it tastes red, not really specifically like a red fruit.

Of course I would have preferred that this was the end. On Refinery29 last Friday, I saw a video of what a year of chemo looks like, as documented by one woman, and the entry in her blog when she talks about “clinging to normal” resonated with me.

I get a little bit of a return to “normal” life, even if it’s only for a few weeks, or a month. Although not fully normal—everything’s kind of on pause. Muffled. I’m in a weird limbo, waiting to find out what’s next.

The good news is that I’m cleared for working out and I don’t have to be quite such a bubble girl (again, for now, but everything’s temporary, really). I am signed up for kickboxing tomorrow, though with my sore left leg (from a flu shot) and my slightly sore and swollen arm from chemo, I don’t think I’ll pose much of a threat. (Because I definitely did before.)

Another bright spot: I am cleared for sushi and oysters now, as well as restaurant salads! I see a few $1 oyster nights in my future. Beyond that, it’s uncertain.

My Hair Isn’t Really Growing Back Yet

The other night, I dreamed I had male-pattern baldness. Instead of my usual fuzz that makes my head resemble that of a baby penguin, I had a big bald patch at the crown of my head, like a monk, as well as a receding hairline. I was kind of upset about this development in my dream.

When people have seen me recently, they mistakenly think my hair is growing back. But it’s really the hair that I have left growing in, because the chemo didn’t make all my hair fall out. It just thinned my hair until it looked so weird, I decided to shave it off.

So I’ve been launching into an explanation that ends with: “I’m shaving all my hair off for Halloween and starting fresh.”

I’m going to be Heisenberg, and by November, my hair should finally start growing back. (Provided I don’t need more chemo.) Then I can just start with a clean slate. Or, in my case, a clean, bald head.

Honestly, I will know my hair is growing back when my facial hair returns. When my mustache is once again thick and luxuriant and when my eyebrows require threading every two and a half weeks, it is then that I will know I’m truly on the road to recovery.

Last Chemo! Why Am I Not Celebrating?

My last day of chemo, treatment 12 of 12, the last of the six cycles, was Friday. Why am I not setting off fireworks, organizing a parade and popping the champagne?

Well, even sparklers scare me, I don’t have time for a parade, and I can’t drink. It’s a bittersweet (and still slightly scary) time. My boyfriend says I always see the glass as half-empty. But I don’t think I’m being pessimistic. I’m being cautious. I don’t want to announce the end of chemo prematurely.

Because there’s a chance, even after these past six months of ABVD, that the cancer isn’t gone. I’m not saying that I know that for sure. I just know it’s a possibility, one that weighs heavily on my mind.

The last PET scan, after eight treatments, showed a reduction in the two remaining tumors, but they’re not gone. Ideally, the oncologists like to see the cancer gone at that point.

My new PET scan is slated for Oct. 10, and then I see the doctor about a week later. So I wait. I try not to think about the pains in my side and my chest. (Is it the tumors shrinking? Are they still there?)

I have plenty to busy myself with in the meantime. On Saturday, my community garden had a Bluegrass, Blues, Bake, Bulb Bonanza. (There’s still time to buy bulbs through Oct. 30 to support the garden!) And then I spent the evening making costumes for my cats for our Breaking Bad finale party. I have work, which I’m thankful for, though I’m still getting used to freelancing. It doesn’t feel real.

I also have something else to celebrate today—the last of the blood thinners! It wasn’t so bad, though the injections sting a bit, no matter how slowly you do them. It’s slightly less painful than listening to that LMFAO song about shots. What I noticed the most after the shots those first few days was that my butt felt funny. That’s right. My butt. It’s where I feel my squeamishness. It’s also the center of my fear. If I’m in a high place and have a fear of falling, or if something gives me the heebie-jeebies, the area around my tailbone feels funny.

After the first few days, the heebie-jeebies died down, but then I noticed the stinging. Also, making someone pinch her abdomen after she hasn’t been able to work out for months is a little cruel, but oh, well. I have more abdomen to poke.

The blood thinners appear to be clearing the clots, although my brave right arm, which bore the brunt of chemo since July, finally gave out on Friday. This time, I got an IV in the hand—but not the vein used last time, because it was a little achey. The IV was in fine, but for some reason, when any medications went in, I had an uncomfortable feeling in the middle of my arm. During the administering of the anti-nausea medication, raised red hives appeared on my arm, and it started to swell a bit.

The nurse put some cortisone on my arm, and she called in the doctor. They agreed it was an allergic reaction, though I’ve had that medication before. I think my right arm just had it with chemo. I feel as if they were protest hives.

The nurse administered the doxorubicin, bleomycin and vinblastine through that arm, but ouch! It wasn’t a searing pain, but a few times, I felt that feeling in your head when you have a lot of pain, like you might pass out. Maybe it was because my arm was irritated and swollen. I know I’ve been extremely lucky pain-wise until now, so I won’t complain. (Incidentally, I just recently found out that vinblastine is made from the Madagascar periwinkle. Who knew that such a pretty flower could be such a strong drug?)

When it came to the dacarbazine, the one that does kind of hurt, not to mention the most caustic of the medications, the nurse, the doctor and I all decided maybe we should try the left arm. The nurse found probably the last good vein in my left arm. I couldn’t even see it.

The next day, my hand was black and blue. The swelling went down after a day or two, though I still have some raised red marks. My entire right arm feels like it’s bruised. Sometimes it’s a shooting pain in my hand and arm, but more often, it’s a gnawing pain. I actually want to chew on my arm, like a wounded animal. It feels as if I could gnaw the pain out somehow. It’s really not so bad in the grand scheme of things.

This is temporary. Even the cancer, if it lingers, is temporary. At the very least, I get a break from chemo for a while. Once the scan results are back, the next steps are determined. I’m hoping that nothing is needed and I’m cancer-free forever. If it still looks as if there’s some left, there’s the watch-and-wait option, which I’m not a fan of. I want it gone! Or there’s the biopsy route.

I feel like I can’t start getting back to my “normal” life until I know what’s in store. I don’t want to make plans and then have them taken away.

Yet I also find this limbo, this uncertainty, comforting, because if it’s bad news, then I don’t know yet. So I wait and try to be cautiously optimistic.

Make Your Own Cat Tortuga Costume for the “Breaking Bad ” Finale

Walter White’s dark deeds are far-reaching indeed, and have crept into my very home. On Sunday night, the chain of destruction he’s set off will unwittingly affect the lives of two unsuspecting felines, who are dressing up for our Breaking Bad finale party. Well, technically, I’m dressing them up. But if there’s one thing I learned from the show, it’s that sometimes the innocents must suffer to achieve your dreams.

That’s the lesson I was supposed to take away, right? Is it that, or something about the road to hell being paved with good intentions?

In addition to the finale party, I’m getting a jump on my Heisenberg-themed Halloween costume. Cancer hasn’t been fun, but it really has been the best thing that’s ever happened to me Halloween-wise. I might shave my head every October. As I mentioned before, I kind of don’t mind being bald, I was never that great at having hair anyway, and it’s made me even more of a Breaking Bad fan.

Cat lady alert: I already have a tie for cats I bought at Target years ago, so one cat can be Saul Goodman. The other cat is going to be La Tortuga—specifically the head of Danny Trejo’s character mounted on the tortoise. Trust me, it will be the most adorable re-creation of a disembodied head mounted on a tortoise ever.

This most likely will be a little upsetting for the cat, but think about how the Tortuga DEA informant felt once he saw that big knife. Or what about the panic attacks and mental trauma poor Hank suffered after this incident?

Since I’ve clearly tried to dress up my cats before, I’ve found that they don’t mind the tie, because it’s lightweight and around their necks, and they already wear collars. They don’t like to wear things on their heads, and it seems that they’ll wear this costume for at least a little bit. The clever cat knows that I will eventually set her free if she will sit still awhile for photos—struggling only prolongs the indignities. So she cooperates for a bit in hopes that the ordeal ends swiftly, and with liver treats.

Below are instructions to create your own Tortuga cat costume.

catfloppyturtle

INSTRUCTIONS

You will need:

  • Tape measure
  • Fabric pen
  • Green felt. I used an 8″ x 12″ piece, because that cost $3.10 at the local fancy knitting/yarn/craft store. A yard, by the way, is $76. Those are meth kingpin prices. I had stood up too fast while leaning over looking at the smaller pieces, and I’m prone to vertigo right after chemo, and the blood thinners aren’t helping with that. I was still a little dizzy when she told me this, and I thought I should pass out when she told me the price to demonstrate the reaction that price deserves. (Maybe she meant 76 cents?) But I’m not Skyler White. I can’t feign labor or physical trauma to get out of a sticky situation. So I just bought the little pieces, because I didn’t have time to go elsewhere.
  • You can use my turtle pattern that I made up, or you can draw a better tortoise of your own. Mine isn’t very precise—I just cut it out as I went along. Precision isn’t my thing. I’m no Gale Boetticher, with a fancy notebook (and karaoke skills).
  • Scissors
  • A tiny piece of white felt, for the eyes. Or you can buy googly eyes at a local craft store.
  • Tinier pieces of black or brown felt for the eyes.
  • White thread and dark thread if you’re sewing on the eyes, or glue if you’re using googly eyes.

1. Measure your cat’s neck with the tape measure for the neck hole. If your cat is trusting and purrs while this happens, you might feel a little guilty. But ask yourself: WWWWD? (What Would Walter White Do?) He would pause for a second, and then manipulate that trust; that’s what he would do. “Nothing’s going to happen, good buddy. This is all going to turn out well for you. For both of us, really. Well, okay, just for me.”

2. Use my pattern and pin it to your felt as a cutting pattern, adjusting for the size of your cat’s neck. You’ll want the neck hole to be big enough to slip on, but not too big. (Mine’s actually a bit too big.) But keep in mind, if your cat has any sense, it will try to run away from you and your turtle costume, so make sure it’s fairly easy to slip on. Or use your fabric pen to trace the pattern, or a better tortoise shape, before cutting.

3. Cut out two tiny circles of white felt for your tortoise eyes. Or, if you’re using googly eyes, just glue them on.

4. Cut out two tinier circles of black or brown felt for your tortoise eyes.

5. Sew the white felt circles on to the turtle face with the white thread.

6. Sew the dark felt on top of the white circles to complete the eyes.

7. Capture your cat, slip the tortoise over its head and take plenty of photos.

cat2floppyturtle

For a more rigid tortoise:

cat2rigidturtle

After my tortoise was complete, I noticed it was a bit droopy. For a tortoise with more shape, you’ll also need:

  • A second piece of felt. I used brown felt that I already had since I don’t have millions stashed in trash bins in the desert and couldn’t afford more green felt.
  • Chenille sticks or pipe cleaners.
  • Green thread. Ideally, you would have the right shade of green thread. I didn’t. But what has Breaking Bad taught us? When life takes away your pseudoephedrine, steal some methylamine. So I just used a different shade of green thread.

In step 2, pin the two pieces of felt together and cut them at the same time.

After step 6, you’ll sew the chenille sticks into the edges of the tortoise, between the two pieces of felt. Then you capture the cat.

ADDENDUM: Someone pointed out that for maximum accuracy, the tortoise shell should say “HOLA DEA.” You can add this with puffy paint or a paint pen, or you can embroider the message onto the shell.

chenille

turtle closeup

Though I have the potential Saul costume, a friend had been lobbying for Todd as a cat costume. Since I’d spent most of my evening making cat costumes, I thought, “Why not devote my entire evening to making Breaking Bad-inspired petwear?” So I made a Vamonos Pest nametag.

cat todd

Today, I will don my porkpie hat and watch the finale, though I will shave my head again before Halloween. In fact, the show provides a lot of costume ideas for a variety of medical conditions. When I spotted a girl in a wheelchair with a painful-looking broken leg contraption at a show recently, I thought that she could go to parties as Hector Salamanca. Crutches? Flynn/Walt Jr.  Off crutches, but still limping? Hank.

Meth empires cause a lot of fights, so if you’ve been injured in a brawl—obviously, “you better call Saul”—and then you can go as beat-up Jesse, Walt or Saul. (Alas, my blood thinners rule out brawling, so this doesn’t apply to me.) Pregnant? First few seasons Skyler. Klepto? Steal things from your host’s home in character as Marie.

And of course, if chemo made your hair fall out, be Walt or Heisenberg.  And make your cats your victims, er, accomplices.

turtlecats

Blood and Wallet Thinners

I just called and left a long, rambling message for my oncologist’s office, saying that I think maybe I don’t need blood thinners after all. I had not been looking forward to a daily injection that I was told “might burn” if administered too fast. But I was prepared for that. And my squeamish boyfriend was going to heroically put his squeamishness aside to poke me in the abdomen with a needle for a few weeks.

But then there was the sticker shock of a $785 copay. Ouch. That hurt almost as much as the bump on my arm that mysteriously appeared last Tuesday.

I’ve mentioned before that since late July, my left arm has been hurting and pretty much just taking it easy while my right arm has been taking the brunt of the chemo. I even accused my left arm of faking it to get out of chemo.

But then the bump appeared, angry, red and burning. One night, I had a dream that I cut my arm and it hurt, and I woke up to my arm hurting for real. It would feel better in the morning, then it got progressively worse throughout the day.

On Friday, during my pre-chemo visit, I mentioned it to the doctor, who wanted to take an ultrasound for a better look at what was going on. The ultrasound technician looked at my shoulder and then worked her way down my arm. I could see the ultrasound, but it doesn’t look like anything to me. It’s just gray and black, like I’m dead inside. In fact, that would be my diagnosis to everybody if I gave ultrasounds: “Sorry, you’re probably dead inside, because it’s just gray and black with some white streaks of marbled fat or marshmallow swirl.”

The technician did find something in the screen, because then she called in the doctor and they agreed that my vein wasn’t compressing and told me that I had some superficial clots in the troublesome arm.  (Just telling my boyfriend this part grossed him out, just to impart an idea of how squeamish his is and how brave he’s going to be to give me shots that I’m too squeamish to give myself.) The bump, apparently, was the biggest clot.

The good news is that these aren’t the kinds of clots that go to your lungs or brain—those are deep-vein clots, which often require six months of shots. These superficial clots can hopefully be taken care of in a few weeks. The doctors are puzzled that it’s happening now, especially in this arm that’s been taking it relatively easy.

After the ultrasound, I went back to the doctor, who prescribed Enoxaparin, while the nurse called around to check on the cheapest and best option. So while I would have a $40 copay, today I found out it’s $785 because of my new insurance deductable. My prescription deductible is $1,250, so it’s going to catch up with me at some point. I might as well get a big chunk of this inevitable cost out of the way quickly, like ripping off a Band-Aid. (Something, incidentally, they don’t do at the hospital.)

But, still in sticker shock, I found myself leaving a confused, halting message. Maybe I don’t need blood thinners? When the doctor had suggested my blood needed thinning, truthfully, I was hoping she would suggest a more organic method. Like cocktails. Would this troublesome vein be cleared up with, say, a week’s worth of happy hours? I didn’t ask though, especially since she’d so patiently entertained and answered my boyfriend’s query about administering IVs in places outside of the arm, like junkies in movies.

Before I go on the blood thinners, I have to take care of some orders of business. I’m going to re-shave my now-fuzzy head, because I don’t want to get my scalp nicked while I’m prone to bleeding. (Also, once my hair grows in a bit, it looks thin.) I also have an appointment with the dentist tomorrow so before the blood thinners turn a routine exam into a horror movie.

Incidentally, my left arm, ever the contrarian, has now stopped hurting.

Why Are IVs Administered in the Arm?

Since mid-July, my left arm has experienced some vein hardening and has generally been taking it easy while my right arm is used for chemo. With two cycles (four treatments) left, my oncologist brought up the possibility of a chemotherapy port, a surgically implanted device that stays in place under the skin for about a year. We also discussed a PICC line, inserted in the upper arm and removable right after treatment wraps up,

Now that I have only one more treatment to go (knock on wood), I think my veins are going to hold out! There’s always a lot of fretting about my tiny veins, but so far, the nurses always manage to always get the IV.

I know it’s good to be knowledgeable about your treatment and be and advocate of yourself, but most of my questions are just kind of silly, born of curiosity. Mainly, why can’t the guy with the cool phlebotomy glasses administer IVs when veins are hard to find? They’re these magic glasses that allow the wearer somehow to see inside your arm, beyond the superficial tiny veins at the top. He told me I had a big fat vein in the crook of my arm, right behind those tiny ones. But I assume there’s some good reason, and as long as the little veins are holding up, I’m too lazy to ask.

However, on Friday, my boyfriend finally asked a question that had been plaguing him for weeks. “Why do you have to use only the arms for IVs?” he asked. He followed this with, “Junkies shoot up in their eyeballs and in between their toes, so I just wondered.”

Now I know that he wasn’t suggesting they administer chemo through my eyeballs or in between my toes, and I’ve also wondered why the arms are preferred for IVs. I probably wouldn’t have posed my question quite that way, pitting medical expertise against viewings of Trainspotting, The Wire and The Panic in Needle Park.

My doctor very patiently addressed the question, though, and in case you were wondering, it’s just not a good idea, for a variety of reasons. It’s unsanitary, for one. Plus, the veins in other areas, like your legs, just aren’t quite as available as you think. The feet are usually far away from where you want the medicine to go. In other places on your body, the IVs might slip out, and with caustic chemo drugs, you really don’t want that.

Sometimes, she said, when it’s an emergency life-or-death situation, they’ll put an IV in the neck. But she succinctly summed up her talk on IVs in places other than the arm with, “We just wouldn’t do that.”

More Thoughts on Being a Bald Lady

I’ve been bald for several weeks now, and I still love it. I’ve put a big glob of shampoo on my hairless head in the shower only twice so far.

Reactions to my new look have been mostly positive. People tell me I can pull the bald thing off. I have big facial features, and it balances out the baldness somehow. They’re strong enough to stand on their own, without a hair frame. Babies seem to like me, and I think it’s for this reason. If someone increased my facial proportions just ever so slightly, I’d look like a cartoon. I’ve never had my caricature done. I’m convinced it would look just like a regular drawing.

I recently thought back to a conversation I had in high school with a friend about my nose. I hated my nose. It’s not exactly that it’s so big, it’s just kind of weird. It’s not like other noses. I mean, I wanted to be weird when I was 15, but weird in a cool way so that counterculture peers would accept me and people who might make fun of me would leave me alone. I don’t think any 15-year-old girl wants to be known for her unique nose.

Anyway, my friend’s wise words that day put me at peace with my nose. She said that my nose fit in with all my other facial features and that if I had a smaller nose, I’d look strange. I realized she was right. I wish I could say from that day forward, I shed all my insecurities and had some epiphany about what makes you unique can make you beautiful, but that didn’t really happen then. No longer hating my nose was an important step forward, though, in a still-ongoing journey of self-acceptance.

Now that I’m bald, this is probably not even the “weirdest” I’ve ever looked. Maybe it’s the most subversive look I’ve had, but not on purpose.

In my mid-teens to early 20s, I was goth. When I lived in Columbus and walked by this sports bar with a giant patio on The Ohio State University campus, I would habitually cringe and wait for insults to fly my way from drunk guys, but in later years, I remembered I wasn’t goth anymore so I wasn’t such an easy target. (Still, really drunk guys will yell for lots of reasons, so groups of them in situations where they can yell at me, safe behind some kind of patio fence, still make me nervous.)

In my 20s, I wore all sorts of crazy outfits. I wasn’t exactly Lady Gaga, but I love fun clothes. Even recently, when I worked in an office (often by myself), I would still sometimes have themes to my weeks: polka dots, black-and-white, cats, gingham.

Now that crisp fall weather has arrived, however, my head has been getting cold. I have my Kangol hat, a purple floppy hat from a friend, a purple cap knitted by another friend and my Heisenberg fedora, of course. And I have plenty of hoodies.

Unless I’m going to an office or a business thing, I don’t usually wear my wig. It’s partially out of the same laziness I’ve always shown toward my hair situation. My wig doesn’t look very realistic either, particularly because I keep fiddling with it—shifting it, touching the back to make sure it’s not puffing out, snapping at its band.

In those situations, I wear the wig for other people. I don’t want to be too distracting by being “the bald lady.” Or the “bald cancer lady” at the office. When I wear my wig, I feel a little bit less like myself, though.

In fact, I went to dinner in my neighborhood the other night after a long day at work and just left my wig on. I didn’t notice until we were almost done eating that there was a bald woman at the table of three next to us, as if we were seated in an invisible bald woman/wig area. I felt like kind of a phony wearing my wig then—I wanted to rip it off and say, “Hey, nice ‘do!”

I think we might be leading parallel, hairless lives, because I think I saw the same person at a concert on Friday. She can pull off being bald and wearing glasses, though. I’m not a huge fan of wearing my glasses, but I mind much less now. Still, I think I look a little like the Beacon’s Closet baby mascot. Oddly, I don’t mind wearing my glasses with my wig. They work together.

As long as I’m talking about wigs and glasses, an aside: Does anyone remember a TV commercial for Focus contact lenses that showed a man and a man in drag out to dinner? (It aired in 1996, so it’s OK if you don’t.) Suddenly the man in drag says, “I have to tell you something!” and he wipes off his lipstick, pulls off his wig and confesses, “I have astigmatism.” Then his date tells him about soft lenses for astigmatism. Not only did I find out I could have disposable lenses, but I loved it for some reason so much that I’ve remembered it for 17 years. So I think about this commercial when I think about pulling off my wig in a public place.

I don’t get many stares. I did get an oddly dirty look on the train that day that left me wondering if I looked like a skinhead. I don’t think so. Dirty looks on the train can be about anything.

I caught someone’s jaw drop once, but she appeared to be from out of town, because she was seated outside having dinner with a bunch of people wearing nametag stickers. She quickly composed herself, but she just didn’t have that looking-without-looking thing that New Yorkers have down, the dead-eyed subway stare—the skill of looking very intently at nothing at all.

Perhaps she wasn’t from out of town, and, like me, she wears all her emotions on her face. Maybe the look wasn’t about me. But for a moment, our eyes met, both of us confused for a second.  My look said,”Huh? Is it because you didn’t expect a bald lady when you looked up from your falafel? Or is it because I look like someone who would steal your falafel from your plate as I walked by?” I was casting an envious glance at her meal, and perhaps it was a protective feeling that made her look up at that moment. Maybe she was opening her mouth to say, “Hey, lady! Get your own food!” But she saw that I was bald and either thought I was too bad to mess with or knew that I was going through chemo and decided to be nice.

If I was worried I’d be the weirdo on the train, I quickly remembered that you have to do a lot to draw attention to yourself. On my way to a housewarming party, a man painted silver got on a few stops later. (What do people painted in silver do? Pretend to be statues? Robots?) But no one looked at him either, except for me.

I think my head sparked a discussion between two teenagers, but it wasn’t really about me. They were trying to come up with the name of the bald singer and one of them finally remembered it was Sinead O’Connor.

On a train ride home, someone stole my thunder by throwing up. I didn’t even notice, until someone warned me to watch out for my shoes, as the motion of the train caused some vomit to roll toward our area. Then, before switching train cars, the stranger and I reminisced about other times we’d seen people vomit on the train. (This was the third time for her in two years and the fourth time for me in five years, though once I was only visiting and it was New Year’s Eve so I’m not sure that incident counts. I have never thrown up on the train, but I’ve fallen asleep on a stranger, who was not at all happy about it. That’s why this is not the City of Brotherly Love, but the City That Never Sleeps, especially not on the shoulder of a public transit stranger.)

When I shaved my head, I had kind of hoped maybe I would get seats on the train. Not necessarily people standing up to offer, but at least I’d get dibs as long as no pregnant women were around. A few years ago at Upright Citizen’s Brigade, I saw comedian Pam Murphy’s one-woman show, “The C Word,” and she has a really funny, true bit where she plays two parts: the cancer patient on the train who hopes for the offer of a seat, and a seated passenger, wondering if she should give up her space.

I realize I fall into a gray area, along with pregnant women who aren’t fully showing yet. I mean, what if she’s not pregnant? In these cases, I sometimes just get up and pretend like my stop is coming up to ease my conscience. I’m also terrible at noticing pregnant women and have stared at someone’s belly for a full minute before I realize I should stand up. I saw one non-showing woman reading a pregnancy book on the train to let people know that yes, she would like to sit.

But I know all bald women don’t necessarily have cancer. And most of the time I’m fine, and I don’t even need to sit. I just like to sit.

I really just need a seat once every two weeks, right after chemo, when I’m tired and in a Benadryl haze. That day was today. I happened to get a seat on the first bus, but today everyone was in a mood. The bus stopped to pick people up and it wasn’t an official stop, so the bus driver wouldn’t let someone off. At least four people who weren’t affected by this were angry. It was just one of those days when everyone’s in a contagious bad mood and no one could break it.

I certainly couldn’t. I was just trying to stay awake and yearning to get home. I should say that today of all days, I guess I looked more like a cancer patient than ever, because I was also wearing a cancer center sweatshirt and my hand was bandaged where they had put the IV in. I was short a hospital gown and a sign, but what can you do?

The next bus was crowded. There was a group of naysayers that you sometimes find at the front of buses and by train doors who loudly assert that there’s no room. Sometimes they’re right, but often, they’re not. I tried to go past them, but got caught in a crush, and someone was yelling at my boyfriend because he was too close to her. “Let’s just leave!” I said, defeated and medicated. We finally got to the space that was behind the group, the space that they told us wasn’t there.

I was still tired and a little cranky that I had to hold on the strap with my numb, bandaged chemo hand, but my other arm hurts from blood clots (that’s another blog). Mostly I was sad—I didn’t want a seat. I just wanted people to be nicer to me, even if it’s because I’m sick.

And people are often nicer, or nice in general. It’s not always the way you think it will be. Good things happen, even on public transit. A stranger will warn you of a stream of bodily fluids heading toward your velvet flats. A comedian I recently saw said a bus driver stopped the bus and wouldn’t move again until someone gave up a seat for a really old woman. (The story was way funnier than that; I’m paraphrasing.)

Some people go beyond nice: someone I ran into this week had gone to the beach the day before and had risked his life to save a stranger who walked into the ocean and tried to commit suicide. He said that hardly anyone was there on a weekday, and he was initially annoyed that a guy had set up his beach towel pretty close to his own, but it turned out to be fortuitous, because this man also helped to save the woman. So things that might seem unfortunate sometimes turn out to be lucky. (Sometimes they’re just irritating. I don’t think the person I fell asleep on gained any good fortune from it.)

I know I’m lucky to have such good support and so many kind words from everyone. I realize it’s selfish in a way to hope to temporarily work my way into the train hierarchy of people who get seats first.

I was just looking for perks, something few and far between when it comes to cancer. Being bald, however, has quite a few benefits. Fast showers. A blank canvas on which to put temporary Cleveland Browns tattoos for football season. My impending Walter White Halloween costume. For now, I can content myself with these perks.

 

Good News (Mostly)

Forget Christmas and even Thanksgiving, despite the latter’s delicious stuffing (quite possibly one of my favorite foods in the world). Memorial Day, the Fourth of July and Labor Day are my favorite holidays. I love summer days when I’m expected to do nothing but enjoy myself. No pressure to buy gifts, no snowy commutes over long distances.

My love of summer holidays started when I was about 10, and I created my own little rock garden in our yard. Since then, I treasured these gifts of a day off from work or school. Often, I don’t even have plans, but just let the day dictate what I’m going to do.

Today is a gloomy, gray and rainy—the perfect day to stay in and catch up on the blog. I’ve had a flurry of good news lately.

More freelance work. I may have some more steady freelance work! I can’t tell you how much having some more work and something steady to do has done to lighten my stress levels. Gone is the gnawing feeling in the pit of my stomach that nagged me every second of the day to hustle, to look for work to do something and to never take it easy. I felt as if I were spinning my wheels. I’ve been exhausted and depressed, and I’m so happy to have some productive things to do for a change.

Possible (probable?) health insurance. According to United Healthcare, I’ve been approved for insurance for September. I’ll believe it when I receive my new ID number in the mail. I realize this sounds cynical but had I not called to check up on Anthem, who told me I was all set to receive COBRA, I would not have had insurance in August.

Care packages and kind thoughts. I received three care packages in the mail this week, full of yoga goodies, biscuit mix (and jam) and clothes and accessories—plus a gift card. But what means more than anything are the thoughtful notes and cards. And I’ve received emails from others who have been through cancer or grappled with insurance woes, offering their own stories and an ear to listen. I have a great support system in place.

Veins are holding up. I have two more treatments to go, but the veins in my arms are hardening. My oncologist and I discussed a PIIC line over a port for the last treatments, but it seems as if my veins may hold up for the rest of treatment. I just need two more!

I have a Halloween costume. Heisenberg, of course. I want to order blue rock candy for my meth, but I’m afraid I’ll eat it all before the end of October.

The meh news? My last PET scan haunts me. The doctors like to see the cancer gone or mostly gone after eight treatments. While it’s going away, it’s not going away very fast anymore. So instead of the end of treatment at the end of September, I could be looking at more treatment. Either more ABVD, the stronger escalated BEACOPP, radiation or just waiting to see if it comes back stronger. I’m told not to worry, and I know worrying won’t help.

I have a rash again on my chest, where it all started. But I try not to think about what this all might mean: I might not be very close to being finished with cancer after all. Either way, I can’t even get another PET scan or see the doctor until my new insurance number arrives.

But even if I have more treatment ahead of me, I know at least I will get better. My prognosis is good. Sure, I miss working out. I miss not having to avoid people who might possibly have the slightest bit of illness. I miss ordering salad instead of fries. I miss not having cancer.

I actually don’t miss my hair. I don’t like wearing a wig. I do it more to make others comfortable, but usually I let my bald head  go uncovered if I’m not in direct sun. Except for yesterday, when I wore my skull scarf to match my skull shirt, and I looked a little like a summery, deranged pirate as I took in two Pacino films at the Museum of the Moving Image. I wanted to punctuate my pirate themed day with a tropical drink at the cheesy palm tree bar, but that will have to wait.

Only a few things are on hold, not my entire life. Until I feel whole again, I have plenty to be thankful for, as the summer winds to a close.

Garden Therapy

I did it. I took my doctor’s advice and took it easy. What a difference a few hours make. I have a few things to write and edits to do this weekend, but someone in my community garden posted the following status on Facebook: “Today is so beautiful, it feels like all the other beautiful days were only a rehearsal.”

That motivated me to pull myself out from under my laptop and doldrums, pack up my ridiculously large garden hat and head to the garden. I always feel better, no matter how stressed out I am that day.

I feel calmer and more refreshed, and I do feel like everything’s going to be OK. Sitting on the sun-warmed bricks and clearing the weeds from the garden path for a little bit did me a world of good.

I did manage to take it easy for a few days, and I went to Southampton for a friend’s art opening last weekend with another of her friends. The three of us marveled at the fresh air. I love New York City—it’s my favorite place on earth. But sometimes, you just don’t know what you’re going to get when you breathe in. Sometimes it’s the delightful scent of Linden trees on a summer breeze and other times, it’s just hot garbage. These smells co-exist in such small spaces and change from block to block. I crossed the Gowanus Canal on a hot day, when it smells like the chemical stew of a Superfund site that it is, and once I reached the other side, it smelled like a cinnamon pastry.

The smell inconsistency doesn’t usually bother me, but there is something to be said for the smell of flowers and freshly-mown lawn.

Today, I realized that it is possible to find those same smells—you just have to be close enough to the ground. The lawn smell came from the grass I pulled up. I weeded near basil and tomatoes, which made me yearn for a pizza or Caprese salad, even though I’m not a huge fan of tomatoes. (I know, I know. I think George Carlin once put my feelings about tomatoes into words most eloquently; skip to a few minutes before the end.) The garden offered smells of mint, cilantro, rosemary and countless other flowers, as well as that summer scent of dirt and sun.

And then there’s the song of birds and the buzz of bees—plus the sirens and honk of horns. It is, after all, Brooklyn. But it did my soul some good.

I’ve said it before: Whenever I garden, I never wish I’d spent my time any other way.

Taking It Easy

My doctor’s advice to take it easy has really been stressing me out. That’s not a good sign. In fact, I didn’t even think to ask if she meant physically or mentally because I was already planning to ignore her advice and wondering how I could make my boyfriend un-hear what my oncologist had just said.

He comes with me to my appointments to make sure I don’t ignore my doctor’s advice.

I got the results of my PET scan today, and I had asked if there was anything I should be doing to get better. I should have known that it would be the one thing I feel I can’t do, but that I definitely should do.

The doctor showed me the PET scan, starting with the first, taken in April, that showed the lymphoma as black splotches. There were quite a few of them—the large mass in my chest and neck, and a bunch of dots through my upper chest, as well as one big spot near my belly. The later scan shows just two spots—the one that had pushed my ribs out in my chest and the belly spot. It’s good news—they’re still shrinking and I won’t be getting stronger treatment, just the remaining four (now three, as of yesterday) ABVD treatments.

But whereas the first PET scan after four treatments showed dramatic improvement, the scan after eight shows moderate improvement. It’s slowing down, while I am getting impatient. So there might be some cancer left after all this is done. Maybe.

Since that second optimistic scan in late May, I feel like my life has been falling apart, mostly with the stress of finding a new job and new insurance. I can’t relax. Since June, it feels like I’ve had a heavy leaden pot of worry in the center of my being, roiling with a big worry and stress stew. I understand my TV cancer companion Walter White more than ever. I want control. But I feel like I have very little right now—not over my body, my finances, my emotions. The latter I can do something about. I still need to work on my attitude.

I don’t cry over hair, no matter what. I’ve cried over test results my whole life. I’ve always beaten myself up about not doing my best. One day In kindergarten, the teacher gave out little awards for being able to recite your address. I knew my address. I was so excited when it was my turn. And then, when all those expectant faces were turned toward me, I blanked. This type of performance anxiety still haunts me today. We had another chance the next day and I got my award. In the end, everyone got one, of course. It was a round piece of orange posterboard that said “AWARD” with a gold star and ribbons that the teacher had stapled to the bottom. I was extremely disappointed in myself for having to use my second chance. I felt as if I didn’t deserve it.

It was the only award non-sporty me ever received until my high school decided to give out letters for academic achievements, and I lettered in academics. I sat near one of my friends who was a star swimmer and track athlete and was in my AP and honors classes. She was really nice, so I know she thought I was also against the academic letters when she said, “What am I going to put on the back of my jacket? Nerd?”

I was secretly kind of proud, but I obviously didn’t have a letter jacket. I wondered if it was too late to join a sports team so I could wear my academic letter. I don’t care about sports much, though, and who gets the ball to wherever it’s supposed to be. I’d rather work myself up into a frenzy about grades and what people may think of me professionally. I really do need a nerd letter jacket. I still have the letter somewhere. The little symbol, instead of a football or volleyball, is a torch. Presumably to fend off the cool people with letter jackets who want to give you wedgies and shove you into lockers.

And so now I have test results that disappoint me a little bit. Today was like getting a B or C when you expected an A. Or not getting a tiny paper award when you expected one.

Yet the remaining spot near my belly is also a glaring example of how useless my previous worrying has been. I knew there was a spot below my diaphragm that was considered cancerous—it’s what put me in the Stage 3 Hogdkin’s lymphoma category instead of 2. But until I saw the scan, I had no idea where it was, and I assumed that it was a smaller area, late to the cancer party that had been going on in my chest and neck. I didn’t realize it was one of the bigger infected nodes.

For the past months during treatment, I’ve had pain pangs in my abdomen that I’ve assigned various possible causes in my mind, from liver failure to intestinal distress. It’s the cancer, probably (hopefully) shrinking —a variation on the same twinges I feel in my upper chest from time to time.  I picture it going down like this. Maybe the black dot on my PET scan is my heavy cauldron of useless anxiety.

I’m struggling now more than ever. Everything just got real. Before this week, I could still kind of pretend like this wasn’t affecting me. I had hair. I had insurance, which runs out at the end of the month.

I didn’t realize my veins were in such sorry shape. I have a little bump on my left arm where part of a vein has hardened. There’s been talk of a Medi-Port, which typically stays in for a year and gives me the heebie-jeebies, though it looks a tiny version of Tony Stark’s Iron Man implant. My other option is the PICC line, which also gives me the heebie-jeebies, but stays in for less time.

Tons of people have had this done, so I need to admit to myself that if I need one, I need one, despite 100 percent chance of the heebie-jeebies. I need to stop trying so hard to stay “normal,” whatever that is. I don’t mind the baldness. I wear my wig only for other people, so I don’t freak them out. The same with the headcovers—that and to shield my head from the sun. (The pork pie hat, I just ordered, though—that’s for me.)

I’m hoping that since I have only three treatments left, my veins will hold out. The nurse yesterday, when she saw my tiny veins, told me she didn’t see how I got away with not having a port. My left arm just wasn’t accepting an IV, so we used my right again—for the third time in a row. When she was giving me the first round of drugs, though, she seemed more optimistic and said I probably have at least three good veins left. That’s all I need—for now!

I’m a little disappointed in my left arm for giving out on me. My left side, where this started and where the lymphoma remains. Side of my spare rib, my weaker eye and the ear that sticks out like the handle of a pitcher. A new study shows that there may not be such a thing as left-brained or right-brained thinking, so at least my creative and thoughtful right brain doesn’t have to forgive the left brain for those shortcomings. It turns out I’m just bad at math. I have a hard time distinguishing my right from my left anyway. I always make that “L” with my thumb and forefinger, no matter what—in the middle of yoga class, while giving directions to people who visibly look alarmed and doubtful (as they should be) when they see me do the hand “L.” Oh, well. It’s about body teamwork at this point, I suppose.

I also talked to a social worker yesterday, about what I would be eligible for now that my income has decreased. That helped—at first because I had to pull it together to talk to her. It’s the first time I cried while I was at chemotherapy. And it wasn’t even about bad news, just OK news. I really need to take a lesson from my veins and toughen up.

Plus, the social worker reminded me of some of the programs MSKCC has in place that I should take advantage of, including the Visible Ink writing program and the Look Good Feel Better program. I told her I’m not really into wigs, but she said there’s also makeup application tips. I haven’t been wearing much since my recurring eye infections, not that I wore that much makeup to begin with. But I think the social worker stressed the “feel better” part of the program, probably because I was still a little teary when she walked in. I put about as much effort into my beauty routine as ever—very little.

I prefer to spend my time working out—at first, in my early twenties, it was always to stay thin or lose weight. It wasn’t until later that I realized I worked out because I truly enjoyed it. It’s odd that after years of not caring about sports (and I still don’t), I’ve found what keeps me grounded is physical activity. It balances me out.

I’m eager to get back to my classes and yoga. Yet how many times have I heard that yoga isn’t just the poses? It gave me balance and sanity, and now that I’ve been told to take it easy, I’m going to have to practice less vigorously, but no less mindfully. But that’s another post completely. I’m eager to get back to working out, but this new “take it easy” advice probably doesn’t include kickboxing. And a Medi-port or PICC might limit my mobility for a bit.

I was beating myself up about something last week, and one of my former writers said, “Time to practice some self-compassion!” She’s right. I need to update my to-do list. It still will have jobs to apply for and deadlines to meet. But I’ve added three more reminders: Self-compassion, take it easy and stop worrying.