Phew!

I was so prepared for bad news about my scan, I didn’t even know how to react when I heard it was clear. It took at least a minute to register. In fact, it’s still sinking in.

Not since the summer of 1994 have I been this pleasantly surprised and flabbergasted by good test results. One day, I answered the phone and it was Mrs. Bergen, my history teacher who called to say that I scored a four (out of four) on the A.P. U.S. History exam. “Four?” I repeated suspiciously. “Are you talking to the right person? This is Josie.” She laughed, and said, “Yes, I know.”

My doctor was happy to deliver the good news. In fact, she thought I’d already known the results so the big reveal was a little anti-climactic. I hadn’t thought to ask the nurse, who came in first to ask me some questions. I’m not sure why. I wasn’t thinking clearly and I didn’t know if she was allowed to tell me. She seemed cheerful, but she’s always a lot of fun to talk to. When she talked to me about getting re-vaccinated the next time I come in, I thought the news might be good, but still, I didn’t ask. (Since I have a new immune system, I have to get all my vaccines again.) After she left the room, my boyfriend mentioned that she wouldn’t be talking about vaccines if my scan hadn’t been clear. I was so terrified to allow myself false hope, I still didn’t ask.

When the doctor came in, she said something about the clear scan, because she thought I’d already known the results. I could have looked online, but I didn’t want to misinterpret the results, especially because I have that troublesome weird spot.

As for the mystery blob that shows up on the scans, it’s gotten smaller. So it’s not cancer, but it’s still not clear what it is. My boyfriend thinks it’s bottled up anger that’s dissipating. He compared it to the part in How the Grinch Stole Christmas, when the Grinch’s (spoiler alert) heart grows three sizes, but instead, the ball of anger that resides in my pancreas is shrinking. I have noticeably less ire.

I do have some radiation-related inflammation in my lungs, but the doctor says it’s even less than she would have expected. As she flipped through the scans on the computer to show me the results, I was still in a state of shock.

I also learned that I might be the only person who wears my MedAlert bracelet that I was told to order when I left the hospital. If I ever need a transfusion, it’s to make sure I get irradiated blood. I asked my doctor how long I have to wear the bracelet, and she said that no one had ever asked her that or mentioned the MedAlert gear. My boyfriend, who loves to interject information while I’m at the doctor’s office, piped up that I’m a goodie-goodie. This is true. It didn’t even occur to me not to do as I was told. I was given a MedAlert order form that was already partially filled out when I was discharged after my transplant and I thought it was mandatory. Also, my friend who analyzes blood gave me a really good explanation of why I need irradiated blood.

The answer to my question about wearing the bracelet is, as it turns out, for the rest of my life, unless I get a wallet card or something. The rest of my life is now a big, exciting thing instead of a question mark. Sure, I know that the cancer can come back. I’ll always have that little question mark in the back of my head. (Or, I suppose, in my pancreas.) But I’ve been given the gift of another six months, at least—possibly a lifetime—of not having cancer. I’m really on the other side of this thing. When I think about it, I sometimes get lightheaded. My life has been on pause, and I can resume it.

When I look back at the past few years, what upset me wasn’t the actual treatment. The chemo, the IVs, the hospital stays, the phebitis—these were tough. But the worst part was having to put my life on hold.

We can’t plan, really, for the future. I don’t know what it holds for me. In fact, after my scan results, I was certain I would be struck by a bus or hit on the head by a falling anvil (the kind that reside in the sky to unfairly take people out who have just received good news). My cynicism has returned. But I can actually move forward right now. I can think in the long term, like everyone else. Yesterday, I thought of vacations. I can go to the beach with my boyfriend’s family. I can plan to go to Europe and meet my best friend’s baby, who was born while I was going through chemo and is now a toddler. It’s as if my life has been in the hands of cancer and I’m finally being given back the controls. It’s wildly exhilarating.

I could steal a police car and drive down to D.C. for a friend’s birthday party, but I think the police work stoppage is over. And I am a goodie-goodie. And I hate driving. So there you have it. The craziest thing I did yesterday was at The Vaselines show we went to in the evening. One of the band members, Frances, was at the merch table and I bought a T-shirt and wore it right then. At the show! That’s a big concert faux-pas. You can’t wear the shirt of the band you’re seeing at the show. But after I bought the shirt, I said, “I’m going to wear it.” And Frances said, “You should!” So I did. That’s about as crazy as I get these days.

I didn’t complete my bucket list yesterday. The free pizza place was too crowded, and after the doctor’s appointment, we were too hungry to make the detour to Roosevelt Island. We went to lunch in our neighborhood and ordered an antipasti plate. The man dining next to us happened to be looking at me, of course, as a piece of prosciutto fell from my fork. I felt his eyes upon me as I looked down at my lap puzzled and didn’t see my renegade ham. I then saw his gaze fall to the floor, where the proscuitto lay. I picked it up and put it to the side on my plate, vaguely embarrassed.

I thought that maybe after cancer, I would be different somehow. Braver. Maybe not as shy. But I’m still essentially the same. When I was back in Cleveland for the holidays, I went to the old Metroparks area where I had spent so much time as a teenager with my friends. I hadn’t realized how lucky I’d been growing up a few minutes away from such a beautiful spot. I hadn’t been much in the winter, and it was particularly lovely with a dusting of snow. Being there with my boyfriend was meaningful—I hadn’t realized I’d never visited the park with him. A friend’s memorial bench sits in the park. I’d always felt guilty somehow for losing touch with him before he died. You always think there will be more time. But as I had time to reflect on mortality this past year, I wouldn’t resent people I lost touch with. In the end, I would value them as much as part of my life, even if it were in the past. People had time to reach out to me, since my situation was years long. I put my guilt to rest that day and smiled at the inscription that’s serious but funny at the same time, as I remember he was. It says he “came here…a lot.”

A lot of things clicked into place during that cold walk, being in a spot where I’d spent so much time as a teen, dreaming how my life would be. I had meant to write it down in a blog, but time got away from me. That’s one thing that I’ve promised my boyfriend I would do if I got a good scan—work less and do fewer 12-hour days and make time for fun.

I’m sure this experience has changed me in some way, but I’m still figuring out how. I still do things like drop ham into my lap at nice restaurants.

After lunch, I celebrated with a nap that spanned the entire afternoon to make up for the previous week’s restless nights. I feel as if I’d been holding my breath for the past few weeks and that I can finally breathe.

It’s easy to get wrapped up in oneself in general, but especially when you’re dealing with cancer. While feeling especially supported by those around you, you’re also really alone. I tried to wrap up all my anxiety within myself, but when I made my announcement that my scan was clear and got responses, I didn’t realize how many people were holding their breath with me. It’s as if Friday’s gusts of wind that swept down the streets of Manhattan on my way to the train after receiving the good news was just the collective sigh of everyone I knew.

Before I left the doctor’s office, I called my mom. Her palpable happiness has one of the best things I’ve ever heard. My boyfriend’s mom, my friend’s mom—does anyone feel things as deeply as mothers do?—sent happy missives, cried, did joyful dances. My boyfriend gave me a big, relieved hug after the news. Friends sent me messages. I had somehow forgotten how much my own story affects others, after two years of people telling me how much they cared about me.

That’s the good thing that came out of all of this. As I’ve said before, I’m not one of those people who thinks things happen for a reason. But I do think you can learn from what happens. During my post-cancer depression, I really hit some lows. Everyone was so happy for me, yet I couldn’t join them. Now I can. I’m finally ready to start celebrating—and living—again, on my own terms.

Goodbye cancer. Finally. Maybe we will meet again. I hope not.

Scanxiety

The other day, as we ate dinner, my boyfriend finally asked me, “What are you doing?”

I was sitting at our dining room table with my hands under my armpits, Molly-Shannon-as-Mary-Katherine-Gallagher-style. “I’m feeling my lymph nodes,” I replied. It was then requested that I refrain from doing so at the dinner table.

Truthfully, I don’t know what my lymph nodes are supposed to feel like, but I’ve been checking in on them a lot lately. I feel under my ears and press on my upper chest, where the troublesome bump showed up two years ago. Tomorrow I get the results from my second post auto-transplant scan.

In December, I felt little pangs and twinges that went away. They’ve been back lately—a pang here and a twinge there—but they’ve been especially bad this past week.

On the bright side, sometimes scan anxiety or “scanxiety” brings on phantom pains. I have had so many pains leading up to the big cancer-or-not reveal, when I am optimistic, I think that they have to be brought on by my imagination. I may have cancer of the tricep and the ankle, if I am to believe the pains.

That’s when I’m being optimistic, which isn’t all that often. I’m more terrified now than I’ve ever been. If there was a bright spot to having refractory Hodgkin’s lymphoma, instead of relapsed, it’s that I never received the news that the cancer went away. It was present for every single scan, stubbornly refusing to leave. I never had a celebration or the chance to breathe a sigh of relief. For a year and a half, it was always cancer, still cancer, still cancer and finally a big question mark.

The question mark is how things ended in July, after my last scan. There was still a spot near my pancreas that continued to light up after chemo, radiation and the stem cell transplant. The doctor didn’t think it was still cancer, and he told me not to worry about it. And I haven’t, for the most part. Until now.

I haven’t really celebrated remission, because I’ve been uncertain if I have anything to celebrate, and I had a lot of recovering to do after the transplant. Once I recovered, I felt weird and depressed for months. Now I’m pretty much back to normal—or as normal as I get—and now I’m certain that this must mean the cancer will return to pull the rug out from under me again. (That’s probably a good sign at least for my mental state. It seems my outlook on life has once again returned to that of a wary cynic.)

I want more time being well. Now that I’ve had a taste of it, I don’t want to go back. When I went in last week for my PET scan, returning to the hospital and having the IV put in again reminded me of that year-and-a-half. It was just eight months ago when I lived at the hospital, full-time, and I’d nearly forgotten it. The scans, the IVs, the tests—everything seems blurry and dream-like now. (Well, some of it was blurred by morphine.)

I don’t want to go back.

During that time, I felt as if I had to shut off a part of myself to deal with it. Now, I feel as if I’m finally coming back to life. Still, I feel like I can’t plan. Someone asked me today if I had a vacation planned in the spring. Not until I get my scan results.

Everything is on hold until tomorrow, yet I also don’t want to know what tomorrow brings. I would rather stay suspended here in ignorance, even as I torment myself. Is this my last meal before knowing I have cancer again? Is this the last evening I have before knowing I have cancer again? 

I’ve been making deals with myself, the kinds of weird superstitions you count on when you have no control over what’s going to happen. If I stay in this yoga pose the whole time, I won’t have cancer. If I make it to the corner before the light changes, I won’t have cancer. My head is a weird place right now.

The very best news I expect tomorrow is that only the weird spot has grown and they’ll want to take a look. Whatever has been going on, the random pains in the spot area seem to be real. And then what? What if it’s something worse? What if, what if, what if.

Regardless of the news, I decided to do something fun to take my mind off any bad news if there is any. I wouldn’t say I have a bucket list so much as a few things I’ve been meaning to do. One of them is to take the tram to Roosevelt Island, and the other is to go to a restaurant in my neighborhood that offers a free mini-pizza with a beer. (Free pizza! My ambitions are low, but delicious and affordable.) No matter what, by this time tomorrow, I will at least have accomplished my life’s more attainable goals. Not having cancer is the main one, but that is not within my control.

?

Before I even got the PET scan results, I felt as if I knew what they would be: No change. I still have a spot that lights up.

That’s pretty much all I know. It’s not any bigger, but it doesn’t seem to be any smaller.

The best-case scenario is that it’s not still cancer, and that if it’s not cancer, it’s nothing serious.

I’m meeting with my doctor on Monday to discuss options. When I spoke to him a few visits ago, he seemed to think that if the scan showed that the spot was the same size, we would wait and keep an eye on it.

Even if the scan had showed nothing, I’d still be suspicious that the cancer was waiting to sneak back up on me. Yet though this was expected, I’m a little sad. Mostly, I don’t know how to feel, because I don’t know what this PET scan means.

More conclusively, a CT scan showed that the blood clot in my lung is gone. That’s a good thing, because they had to use a big needle for that test, and since I’m out of veins, the nurse said it would hurt. It did. And then they had to put in a bigger gauge. That hurt too. Also, they did the injection slower so it would hurt me less, but it still felt like my arm was being crushed from the inside. It wasn’t horrible, just unpleasant and weird. I felt like my bloody bandage made me look tough on the train, though.

Uncharacteristically, I don’t have much to say at all. I kind of don’t want to talk about the results, because I’m not even going to venture a guess at what they mean.

Also, I’m supposed to be writing about Greece right now, and I’m behind on my deadlines and work.

So for now, I’m just going to keep putting one foot in front of the other to see what’s going to happen next. If I don’t answer emails or inquiries, don’t worry. As always, I’m just scrambling to do as much as possible in this interim of relative wellness.

In my mind, the spot on the scan is shaped like a question mark. I wish it were like a game of Operation where someone could go in and remove it.

Good News, Unknown News

The good news is that I finally have my hospital admission date: April 13.

I suppose unknown news isn’t really news. The outcome is the same, and things are proceeding as planned. But after the MRI, the doctors still aren’t quite sure what’s lighting up on the PET scan. They think there’s a 75 percent chance it could be Hodgkin’s lymphoma, which is strange, because it’s not in my lymph nodes, but it my pancreas. The other 25 percent is a big question mark. Inflammation? It doesn’t appear to be pancreatic cancer or another pancreas issue, according to the MRI.

There was talk of doing an endoscopic ultrasound and biopsy this morning—in fact, I had one scheduled for next week. But after some thought, it was cancelled. The biopsy would sample only a very small part of the pancreas—possibly not enough to tell if Hodgkin’s lymphoma was present. It also might not rule out other possibilities enough that they could tell what exactly it is. And doing a more invasive surgery at this point doesn’t make sense.

The radiation doctor was going to radiate this area anyway, so everything is going to go as planned. Five days of outpatient radiation begins on April 7, and then the hospital stay and everything it entails begins the following week.

I’m disappointed that there’s still an unknown bit of possible cancerous something lurking as I go into transplant, but I’m also relieved that this doesn’t push back treatment too much. I want to get this over with. I am as impatient as this cancer is stubborn.

Photo note: I have no photo of my pancreas on hand, so here is a photo of my cats taking an IQ test.

Ultrasound and My First MRI

Today I had an ultrasound of my legs to check for more blood clots that could potentially lead to another pulmonary embolism, and I had an MRI, which wasn’t as bad as I’d thought

I get the results of the latter tomorrow. My hope is that it shows no more lymphoma and that the PET scan keeps lighting up because, instead of a glowing heart like E.T. the Extra-Terrestrial, I have a glowing pancreas.

My ultrasound didn’t show up any more blood clots that could travel to my lungs. I’m still concerned that my blood seems to clot so easily, even when my platelets were low. I’ll be off the blood thinner for a little while in the hospital, when my platelets drop post-chemo. I irrationally worry that my blood will just all clot up and stop flowing during this time.

In addition to the good news of no clots, I also got some book recommendations from the person who administered the ultrasound. We got to talking about books, and she wrote them down for me so I can put them on my Kindle for my long hospital stay.

Then I went to have an MRI. I’ve heard that they’re boring and unpleasant, as well as claustrophobia-inducing. It wasn’t nearly as bad as I thought it would be. In fact, I thought it was a little bit better than a PET scan, because my arms were in a less awkward position above my head. Also, I always almost fall asleep during PET scans but not quite and end up groggy.

There’s no chance of that with an MRI. That’s because an MRI is loud. That kind of surprised me.

After I filled out the forms about metals in the body and put on a robe, I was led to the MRI room. When I put the key to my locker, where I’d stashed my belongings, on a counter in the room, I thought I saw candy on the counter.

I haven’t worn my usual gas permeable lenses since this summer’s eye infection, and I’ve been wearing disposable lenses. They’re weighted for my astigmatism, but I can’t see as well, so I don’t know what’s going on a lot of the time. It keeps things interesting.

After I was strapped in, one of the technicians approached with the colorful-looking candy wrapper thing. Irrationally, I thought I was going to get some sort of special candy. Maybe for MRIs you get candy instead of that red drink for PET scans? They were earplugs.

I was a little surprised to see race car stickers on the outside of the machine. Sometimes, the machines are adorned with something to make you feel better. My last PET scan at the Evelyn H. Lauder Breast Center was in a forest-themed room. There’s a mural on the ceiling so when you’re not all the way in the machine, it’s as if you’re in a grove of trees. A few fallen leaf tiles on the floor complete the effect. It’s a nice touch.(For some reason, the last time I was there, it was freezing, so I kept expecting to see that the ceiling trees had lost all their leaves and had icicles hanging from the branches.)

Once I was inside the machine, there were more stickers. I’m not sure if I was in pediatric machine (for short people?) or not, but I liked the array of birds, monkeys and other animals to look at. At my eye level were two pink elephants, a pair of shiny giraffes and a zebra. I decided that, based on his sticker companions, the remaining animal sticker was a crocodile, not an alligator.

Then the noise began and I understood the earplugs. It’s not deafening by any means, but it’s a little like being at a construction site. A friend said his MRI was like listening to Nitzer Ebb, and now I see what he means. With the noises and the animal stickers, it was like being at a modern art installation that I didn’t understand. If done properly, people might line up for hours for this experience—especially when the ’80s video game noises began and my little machine bed began to vibrate, like I was under attack. It was like being in a Galaga ship.

When there was a brand-new noise, I could guess that a part when I had to hold my breath was coming up. Someone would announce that I should hold my breath and then there would be a flurry of noises. When those stopped, the voice would come back to tell me to breathe.

After the first round, they put contrast media into my IV and then I pretty much went through the same routine again. Between the stickers, the noises and holding my breath, there was enough to distract me, so it didn’t feel that long.

I get the results tomorrow morning, and then I have a radiation oncology appointment in the afternoon. Fingers crossed for good news.

Better News?

Well, I still have that pulmonary embolism. But my doctor called today to say that after the radiologist took a look at my PET scan, there’s a chance I might be lymphoma-free after all!

This is good news. Overall, the doctors are pleased. However, I have a glowing orb in my abdomen. I have an MRI scheduled for Thursday so they can get a better idea what’s going on. I don’t know much about MRIs, other than they’re boring. Someone I know said it’s like listening to Nitzer Ebb while being still for a long time.

My pancreas has been mentioned. I’m not sure what its problem could be.

Maybe the MRI will find an ingrown twin. Or discover why I have an extra rib. (After more than a year of endless appointments and tests, no one has mentioned it, so I guess it’s not a big deal. Maybe I’ll finally ask about it.) Maybe it’s the source of my power. Maybe it’s untapped potential. Maybe it’s my tiny, shriveled soul. Or gum I swallowed, though I’ve swallowed maybe only a piece or two over the years.

This does possibly change the course of my radiation treatment, so everything is on hold for a bit until Thursday and Friday, when the doctors go over what they find.

So I’m still not sure when my hospital stay begins. I am meeting with my doctor on Friday to go over the MRI and ultrasound results. (I’m also going to get leg ultrasounds to look for more clots, and I forgot to ask if a possible filter placement would delay anything.) If everything goes as they think it will, then I’ll probably meet with the transplant doctor on Monday, and it’s possible I’ll start radiation later that week. So we’ll see.

Odds for staying cancer-free are better if you go into the transplant with a clear PET scan. The best-case scenario is that it is not Hodgkin’s lymphoma anymore, and I just have a glowing belly orb.

UPDATE: A friend says it’s probably a glowing heart light, like E.T. This would also explain why I love Reese’s Pieces. I’ll alert the MRI technicians.

Pulmonary Embolism and PET Scan Results

As I was taught in journalism school, I’m going to put the most important information at the top. I have a blood clot in my lung, so I’m going to take blood thinners. Also, my PET scan showed almost no cancerous activity. I have had two remaining stubborn spots that ignored the ABVD chemo and shrunk slightly with the Brentuximab. Two rounds of augmented ICE finally got rid of the spot in my chest. A tiny bit remains in the belly area, but the good news is that they’re going to proceed as planned, with the radiation and the stem cell transplant.

I’ve been pretty sedentary lately. But over the past week or so, I’ve felt winded—really winded walking up the short flights of stairs to our third-story apartment. I also was really out of breath after running for the bus the other evening, but it was worth it. It was really rainy and windy, and I’d taken a gamble that the bus might be waiting at the stop by the train station. It was, and I had to walk only a block home. I consider taking this risk a great success now that I don’t get out much.

Yesterday, I went to the near-top of the Empire State Building. Friends were in town and they offered to be my tourist beards to this attraction, which I’ve never visited. I now have seen everything in New York City there is to see. (Literally—you can see everything from the near-top, which is considerably cheaper than the absolute top.) You have the option of walking up six flights of stairs or taking an elevator to the observation deck. We looked at one another for awhile, all hoping someone would suggest the elevator. Finally, I cited my health and recent shortness of breath to avoid the stairs. Also, walking up six flights of steps is harder than it sounds. I did it once when an elevator was broken and deeply regretted my decision between floors four and five.

But now I can cite my pulmonary embolism as a reason for my shortness of breath. Although the doctor pointed out my hemoglobin is low, and that can also make you more tired easily. (That explains why I needed to go to bed after cleaning the apartment yesterday.) I suppose I should have noticed something amiss, but it’s hard to tell what isn’t normal anymore.

I also forgot to ask if there was anything I could do to avoid clots—other than to not have Hodgkin’s lymphoma or chemo. I seem particularly clotty, although I don’t think my arm, which is feeling a little better, showed any clots. It’s just irritated veins, I guess.

On Thursday, I’m going to have some ultrasounds of my legs done to see if they should consider filter that would filter out any more blood clots. (It’s one of those things that sounds made-up. Really? They can do that?) And I’m on Lovenox for another six months. I have those weird, hard bumps under my skin from the Neupogen injections, so I feel as if I’m running out of places to give myself shots.

As for the PET scan, it’s good-ish news. I’d rather have this stubborn cancer spot be gone already, but I’m also glad that it’s not going to hold up the next steps for radiation and stem cell transplant. The doctor showed me the pictures, and everything looks much better.

I’m meeting with the doctor about the next steps for radiation and transplant on Thursday, so I’m still on track! I won’t be in the hospital this weekend, but hopefully by the following weekend, I can start my stay. Not that I’m looking forward to it, but I’m looking forward to being on the other side of that stay.

On Cleaning

I just spent a few hours cleaning. Mostly this was filing papers and dusting. With my bum phlebitis-inflamed arm and my chest catheter, I can’t do things like dust under the bed, or move things around so I can vacuum and mop.

I’ve had several last-cleaning-before-the-hospital-stay situations—before both rounds of augmented ICE, for instance. But this feels particularly final, since I’ll be away for my stem cell transplant and radiation for a month and I won’t be allowed to clean for three months. Specifically, I won’t be allowed to vacuum or clean the bathroom.

There’s a chance my hospital stay will be delayed a week or two. (The worst case scenario would be longer, if the PET scan still shows cancerous activity.) So I may be able to clean next weekend. Yippee.

People have asked why I don’t hire a cleaning person. I’ve suggested getting a cleaning person during my convalescence, but my boyfriend shot down that idea. Truthfully, I’m relieved.

I’m not comfortable hiring someone to clean for me. That’s not to say I’m against having things done for me. My boyfriend does most of the cooking, because I don’t have time. And he would do the driving when we had a car. I liked pretending that I was a fancy NYC person with a driver.

I love having my laundry done. I might live here forever specifically for that reason. When I heard that you could just take your laundry to the laundromat and it would be returned to you neatly folded and clean, I nearly wept for joy. It’s like being in college and going home for the weekend and having your mom do your laundry, without the guilt.

The thought of doing my own laundry again leaves me deeply depressed. It’s not just the laundromat, which is an inconvenience. When I had my own washer and dryer in Ohio, I still wasn’t big on doing laundry. Or doing laundry correctly, I’m told. I just put all my clothes in together, without sorting. My laundry all has something in common—it’s dirty. So in it goes, and out it comes, clean, if maybe grayer or smaller.

I was taught to read labels when buying things to avoid buying dry-clean-only items and things with complicated instructions. Sometimes I forget. With dry-clean-only items, I often leave them in a pile and then wear them again a few times, my own version of dry-cleaning, before actually taking them in to be cleaned professionally.

If I have my way, I will never do my own laundry again. But I’d probably hire an assassin before I hired a cleaning person.

Growing up, somewhere along the way, it was instilled in me that having a cleaning person is for lazy people. Frivolous people. People who can’t clean up after themselves.

I know this isn’t true. Friends who are highly respectable, responsible people have cleaning people or cleaning services. So I don’t judge others, but I would judge myself harshly on this point.

I’m not sure where I got this idea. I don’t think it was ever overtly stated. But it was implied.

My grandmother did all her own cleaning. I’m not sure how she would feel about my laundry situation, but I know she hated ironing, so I feel as if she’d approve of my current choices. (Ironing depressed her. I think it made her dwell on disappointments. I feel the same way about cleaning the bathtub. I can’t clean the tub without feeling angry and depressed, so I get it. We all have a household chore that gives us too much time to think and inevitably and inexplicably stirs up all of life’s disappointments.)

I think when the subject of someone with a cleaning person was brought up, there wasn’t quite an eye-roll. But it was said with a hint of disapproval and a slight pursing of the lips.

So, with my last bit of strength, I will be dusting or mopping, reluctantly and with an air of martyrdom and grim determination. Though now that I physically can’t do some chores, I will channel my energy into bugging my boyfriend. He might change his mind about hiring a cleaning person after all.

 

10 Tattoos

If you would have told me that, at 36 years old, I would drink a few cups of red stuff that promised to be radioactive and then get nine tattoos, I would have been surprised. That seems like something that should have happened in college, when I regularly consumed drinks with names like Windex, the Bettie Page and Mind Eraser. I was 20 when I got my first — and only, until yesterday — tattoo, a small Libra sign on my shoulder.

The whole experience of my PET/CT scan and radiation prep was a little like being in my early 20s. At one point, people drew on me with markers, like I was the first guy to pass out at the party. I also spent some time lying in a bag full of chemicals with a piece of masking tape holding my chin up, as if I were some sort of performance artist. (This also seems like something I could have done for an artist friend — I can see someone asking me to lay in a bag of chemicals to make a mold and agreeing.)

What’s even more surprising is that I had forgotten a lot of this was supposed to happen yesterday. It was all explained to me a few weeks ago, and then I promptly forgot about the tattooing and molding part of my radiation oncology appointment.

When I arrived, I changed into a navy hospital robe, which I later discovered was the less chic of the two versions available. While others seemed to have sleeker gowns with white piping, mine was a plainer, droopier version. I’d noticed the other robe in the pile in the dressing room, but had thought it wouldn’t make much difference. Perhaps I am placing too much blame on my robe. I’m not very good at tying the back, and I have a knack for looking slightly disheveled, even when I’m wearing clothes with buttons and zippers.

Sitting around in robes with a bunch of other people with shaved heads and cropped hair makes me feel as if I’m a monk.  Or maybe in a cult. Wait in these outfits we’ve provided so we can make a mold of your upper body, then we’ll give you a red drink and tattoo a symmetric pattern on your body.

The initial explanation of the mold sounded like I was going to be vacuum-sealed, but I laid on top of a bag of warm chemicals for about 15 minutes until it hardened to make a mold for future radiology appointments. They put a piece of masking tape across my chin and attached either side to my arms, which were above my head. All those savasanas at the end of Bikram yoga class came in handy as I had to lie still.

My veins remain tiny and uncooperative, but the nurses found one for the IV. Then it was finally time to drink the red fluid. “Raspberry,” the nurse noted. Again, I asked if there were other flavors, but no, that’s it. After not eating for more than six hours, I find myself looking forward to my raspberry radioactive beverage.

Then it was time for the CT and PET scans. Since the contrast injection sometimes burns, they slowed it down a bit for me. (Last time, it caught me off guard when it hurt.) They checked on my comfort, but since my chin was again taped and strapped up, I could mostly just grunt that I was OK. The worst part of the scan, for me, isn’t even staying still for so long; but it’s hard not to fall asleep. When I do start to nod off, my arms move then I wake up, alarmed. So I’m usually left a little drowsy.

I was nervous about the tattoos. I should mention that I passed out when I got my first tattoo, the little Libra symbol. The tattoo artist had told me to let him know if I felt nauseated or light-headed. “I feel funny,” I announced, and then the next thing I saw was the bottom of a bucket, which my head was in. I emerged from the bucket to see the friend who had accompanied me, red-faced and laughing with unbridled mirth. The tattoo guy said that people pass out from an adrenaline rush and he’s had 300-pound linebackers pass out on him. It’s possible that he was lying to make me feel better, but he didn’t seem like the type.

Still, I hadn’t had the desire to get more tattoos. I just couldn’t think of anything else to get, or where to get it. Even when I dressed at my most outrageous, there’s a sense of conservatism that pervades my wardrobe. Ever the goodie-goodie, even when I’m trying to be cool. So when it came time to get a tattoo, I wanted something that could easily be hidden. I was mindful that I’d need to get a job someday. Now, of course, tattoos are more acceptable, but even then, I wanted to be rebellious in the most cautious way possible.

“How many?” I asked yesterday, as they took measurements and drew on me with markers.

“Nine,” was the reply. Nine?

“Is this going to hurt very much?” I asked. It was the same question I posed years earlier to the man wearing a leather vest with sleeves of tattoos (before I passed out). That guy had assured me that if it hurt too much, people wouldn’t go back for more tattoos.

I was assured it would hurt less than the tattoo I got 16 years ago and even less than a finger stick. I expected some sort of fancy tattoo gun, but it looked more like an ink pen. “Like a prison tattoo?” my boyfriend asked later.

I guess. I’ve never been to prison. I imagine this was much more sanitary. But it didn’t hurt much, to my relief. I got three down the middle of my body, two on each side and two on my legs. They explained that they don’t want to make them too big, as they’re permanent, but they also have to be able see them during your radiology appointments. They’re small dots, like the one Tom Hanks got in an episode of Bosom Buddies to impress Sonny when he got drunk with Amy. (Perhaps my fear of tattoo pain stems from watching this episode that apparently left quite an impression on me as a child.)

The next step is to wait for the doctor to call with the results. I have a confession: I can view the results now online, but I’m going to wait for the doctor to call. I may have 10 tattoos, but I’m not tough enough to read the lab results on my own.

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.”