Pulling the Cancer Card

Last night, I had a dream in which two women were making fun of my haircut and I said, “Hey, I have cancer!” Predictably, only one looked shamed, and the other seemed nonplussed. You’d think my own subconscious would be nicer to me.

But then, in my dream, I headed to a Mexican restaurant for margaritas and appetizers, so perhaps it was a form of apology from my REM sleep cycle. Sorry this lady conjured up was so inconsiderate; have some fried food that doesn’t count because you’re not actually eating it.

Sometimes, though, I do want to go around saying, “Hey, I have cancer! Be nice to me!” Yes, I would like to pull the cancer card to bully and shame people into being nice to me.

But then again, isn’t everybody going through something? Who am I to demand special consideration? Should I be allowed to lash out because things aren’t going the way I planned?

A few months ago, someone shared an article on Facebook titled “Let’s be gentle with each other. Let’s read each other’s signs.” The post was written by a woman whose husband suffered a traumatic brain injury that took six years to recover from, and during that time, she wanted to walk around with a sign telling people to be gentle with her because of what she was going through. She posited that we would treat one another differently if we all wore signs about what we were going through. (Hopefully.)

I do hate pulling the cancer card, so I try not to. Unless it’s because I want a seat on public transit. It’s often because I want to have a temper tantrum. Don’t we all have those days when we want to vent about life’s unfairness to then hypocritically demand special treatment? Maybe it’s just me.

On days like today, I do sink to lows, and something today made me want to throw a fit and let everything out in a flood of tears and angry words. (The type of angry words, by the way, that I think are stuck below my trachea and causing the abnormal PET scans.) So that’s why I’m writing it down here.

Today, someone told me that I wouldn’t be able to get the questions I needed answered for a story because the person was too busy. I was upset because it’s a day after my deadline and I sent the questions more than a week ago. Mostly, however, I was upset because I had cancelled by first post-chemo date with an oyster happy hour to finish this story tonight. Woe to the person who is responsible for coming between me and an icy platter of delicious $1 bivalves after months of separation.

This stuff happens all the time, so my personal reaction to this isn’t warranted. It’s unreasonable to think that this person thinks my time is less valuable. Yet I wanted to announce, “I rushed home after hearing that I might still have cancer and might have to spend three weeks in the hospital to interview the director of this program when I wanted to go home and cry.” I suppose that might have been a good thing, in retrospect, to have something constructive to do instead of wallow in self-pity and fear.  I also wanted to say, “I spent hours working on this, already, and I just need five minutes from you.” But what I really wanted to say was, “I haven’t eaten oysters in months, and tonight was the only chance I had to eat them for $1 each this week, and I might need to have more chemo so my time to enjoy them is limited, and I am holding you personally responsible for this, though it is not your fault.”

But honestly, I don’t know what the person who can’t answer my questions is going through. I do know she’s extremely busy. And, after all, I’m the one with the cancer and the chemo restrictions and the hankering for oysters and the bad mood. While I haven’t actively thought about the disappointing PET scan results and the need for another biopsy, I’m extremely sensitive to the smallest disappointments.

I tried to cling to the positive after the news on Friday. It might not be cancer; it could just be inflammation. Also, I met with the doctor yesterday, and I found out the surgery isn’t very invasive at all and I don’t have to spend the night at the hospital. And it’s after Halloween, so my plans to be Heisenberg will not be foiled.

The surgery takes only an hour, so the chances of a full zombie outbreak while I’m out are very slim. My boyfriend told his dad about my fears, and his dad pragmatically responded, “That probably won’t happen.” For his recent birthday, my boyfriend’s dad got some sort of chainsaw on a stick, though, so that’s easy for him to say, since he has the perfect zombie-killing tool.

Also, I can get back to working out again, and hopefully I can lose the 10 or so pounds I’ve gained while being somewhat sedentary. But the surgery and the possibility of remaining cancer—not to mention some pretty intense-sounding treatments—have me a little down. The thought of heading out for $1 oysters like things were almost normal again made me smile, and so that’s why I was so disappointed today. It’s what they symbolized. I want to slip into a pool of self-pity and think, “Well, it’s not like I have good scan results to celebrate anyway, so I may as well spend the evening writing this.”

Although what’s more normal than having to cancel plans because someone didn’t meet a deadline? I guess that’s not the kind of normalcy I was seeking, but there it is.

I suppose if I had a sign right now, it could be summed up, “I’m sad and feeling sorry for myself and prone to irrational feelings. Please send oysters.”

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.