60 Percent

Whenever I’m feeling better, I don’t have as much time to blog. Work and freelance projects need to be completed, my garden plot needs attention, workouts are booked—and, of course, there’s fun to be had. Whenever I feel overwhelmed, I think of the alternative that I’ve experienced while being sick—not being able to work, having to stay away from soil and gardening, not having the energy to do fun things. I’ve been so busy, I never gave an update on my prognosis going forward.

Basically, there’s a 60 percent chance that this cancer will come back within the next five years. When it does, it will probably come back in several spots in my liver. It’s too hard to get out at that point, so then I’ll just have cancer, and they treat it like a chronic disease with medication. It will buy me decades, they say. Since 60 percent is kind of in the middle, it’s not enough to give me preventative drugs and have me deal with the unpleasant side effects.

Steve Jobs’ experience with pancreatic cancer makes a little bit more sense now to me. He also had a neuroendocrine tumor and had a Whipple procedure. He eventually died after a liver transplant, so I assume that if the tumors came back to his liver, he opted for a liver transplant. (Since I’m not a billionaire or Frank Underwood, I don’t think this option is open to me, and I’m not sure if it’s the best option anyway.)

I haven’t thought about it much, because I haven’t wanted to. I wasn’t worried about the first scan, because it was so close to the surgery. Now that my second scan is coming up on Friday, I’m very worried. I want more time of being “normal.”

On Sunday, I was at the community garden, weeding the brick path, when I disturbed an ant hill. I brushed off the ants, but one got stuck in the worn fabric of my gardening gloves. It looked like its head was stuck in the threads and it frantically tried to free itself. I tried to help the ant, and for a while, I wondered if it was more merciful to crush it instead of possibly crushing a leg or antenna. I felt guilty: If only I hadn’t come to the garden that day, the ant wouldn’t be dying. After several minutes of both of us working together, however, the ant was free, and I was so relieved.

So yeah, I’m in a weird place emotionally.

For me, the question of the cancer coming back is not “if,” but “when.” People tell me to think positively and to focus on the 40 percent, but I’m a pessimist and I believe in trying to prepare for the worst even as I secretly hope for the best. The odds haven’t exactly been in my favor in the past. I was supposed to have six months of chemo for Hodgkin’s lymphoma, which didn’t go away, so I had a stem cell transplant. Having a neuroendocrine tumor is rare, and having two types of cancer is pretty rare too. (Our late kitten’s condition of FIP was also relatively rare.) I keep expecting a rare good event to balance things out. I’m genuinely surprised when I don’t win the lottery.

Instead of winning the lottery, I would settle for not having the cancer come back. Definitely. You don’t get to bargain, but that doesn’t stop me from trying, and hoping, even as I try to steel myself for the worst.

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.

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.

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.