auto stem cell transplant :: A Pain in the Neck | My experience with Hodgkin's lymphoma (& neuroendocrine tumors)

A Year Later

This wasn’t the post I was going to write when I planned to mark the one-year anniversary of going to the hospital for my stem cell transplant. This was going to be a post about how much has changed since a year ago today, on the eve of entering the hospital for one month for an autologous stem cell transplant. I was planning to have people over to celebrate and watch the new Game of Thrones and celebrate my half-birthday, with my cats dressed up as dragons.

I want to preface this by saying that I’m OK, and, as far as I know, cancer-free. Yet I’ve been having some problems breathing and spent seven hours at MSKCC urgent care on Monday evening. I never wanted to have that hospital bracelet on my wrist again. The diagnosis was walking pneumonia, yet I still can’t breathe and there’s still a little doubt as to what’s wrong. I’m seeing a pulmonologist.

This started last Saturday, when I noticed it was a little hard to take a deep breath. It worsened throughout Sunday, and by the time I climbed the two flights to my apartment after an Easter feast, I was coughing, panting and gasping for air. (And it wasn’t just all the ham, sausage, potato salad, deviled eggs and desserts I’d just ingested that slowed me down.)

The problem was I’d signed up for a cycling class Monday morning and it was too late to cancel without incurring a $20 fee. I went to class and informed the instructor I couldn’t really breathe—problematic for a cardio class. He told me I could reschedule, but I just took it really easy through class and somehow made it. I scheduled an appointment with a general practitioner close to work and left for a 3 pm appointment. I didn’t come back that day.

After I saw the doctor around 4, and told him about my medical history, he wanted to send me to urgent care to rule out a blood clot. (That was before I told him I had already had a pulmonary embolism, and then he was certain we had to rule out a blood clot.) He wanted to send me to NYU Langone, but I thought I should go to MSKCC since they knew my history and since I have a pulmonary function test slated for this Friday. In retrospect, I realize this was a mistake, but…hindsight.

I arrived at urgent care around 5, and I’ve never seen it so busy. I knew it would be a long wait, because a blood clot could be serious, but I was still mobile and feeling OK and it was a ruling-out situation. The doctor there listened to my lungs and said it was good that the other doctor wanted to rule out a blood clot. I had a CT scan. I got out at around 1 am. The good news is that there was no clot. Officially, she said there was “something” there and they thought it was pneumonia. Not as much info as I would have liked after 8 hours, but she told me to call my MSKCC doctor for more info about the scan the next day. I got Levaquin antibiotics and took a cab home.

I was surprised at how much having that hospital bracelet on my wrist affected me, after being free of it for so long. It was like shackles. I was sad and scared, not knowing what was wrong. For nearly a year and a half, I was in a zone—keeping my head down and getting through something. After getting back to “normal” life, I felt ill-prepared to deal with tests and the pain of the contrast injection and the search for a good vein for an IV. My armor was rusty, my coping mechanisms as buried as my beat-up veins.

Because Mad Men is on again, I thought of the words of Don Draper in season one, “It will shock you how much this never happened.” (I feel like that about the last few seasons of that show. I can barely remember the plot. Will it ever get good again before the end? But that’s another post.) It’s not that I feel like cancer never happened, it’s just so separate from me. It’s lucky, I realize, that it hasn’t had many lasting physical effects. I’m surprised when I have a follow-up appointment. That might be another coping mechanism.

During the months of depression after recovery, as I tried to adjust, I was in a weird middle area—no longer a cancer patient yet not ingrained into regular life yet. I don’t know if there’s a way to strike a balance.

When I was discharged Monday, the doctor said it was probably walking pneumonia but she wanted someone else to look at the CT and I should talk to my doctor before continuing with the Levaquin. I called Tuesday but didn’t hear back, so I took the antibiotic. On Wednesday, I called again, and they said it was “atypical pneumonia.” My general practitioner wanted a follow-up on Thursday.

Wednesday night, my elbows started itching, followed by my ankles. Then blotches appeared on my cheeks. A trip to the ER was advised by my doctor if anything changed or happened, but I wasn’t interested in spending another eight hours in urgent care. I went to sleep and my rash had disappeared by morning.

The doctor sent me for X-rays on Thursday, and though the front desk told me I could go to any location on the sheet, only one did X-rays. After huffing all the way across town in the cold, I broke down and took a cab to the other location. My breathing wasn’t getting any better, and sometimes, I would wake up gasping at night. I would be panting so much by the first flight of steps that I could hear my downstairs neighbor’s dog rush to the door, thinking I was another canine.

Later that day, I had an appointment with a pulmonologist. While sitting in his waiting room, the tops of my feet started burning and a rash started spreading up my legs. It was the end of the day, and I rejoiced when the other patients left so I could scratch at my ankles to my heart’s content.

This doctor took me off the Levaquin because of the rash, and prescribed a Z-pack. The X-ray didn’t show any pneumonia, so it’s a mystery why I can’t breathe. He said something on one side is elevated, but he wants to see the CT scan. I came home and slept for 12 hours.

I called Friday and had to fax a request for a CD of the results. My boyfriend went to the mailing center (presumably to use a time machine to go back to when fax machines were relevant) to fax a form that I printed out and then he switched his work hours to go to the hospital to pick up the CD and take it to the pulmonologist’s office. Still, it was hours before the weekend, and now I must wait.

I cancelled my plans and have been trying not to breathe too deeply. My boyfriend thinks I sound a bit better, but I think I’ve become better at not exerting myself. The real test is tomorrow when I am out and about.

So here I am, a year after packing my bags and checking into the hospital for a month. The experience seems so far away. Yet spending this weekend cooped up, convalescing and taking it easy reminds me of all that time I spent in various stages of illness, in a limbo, waiting to be well again.

There’s no finite amount of illness you have in your life, but I’m mentally done. Logically, it doesn’t make sense, but just one more day not on my terms feels like it’s being stolen from me.

I was speaking to someone about cancer this weekend after hearing a few other experiences. You always try to focus on the positive, but the thing is that there’s no “good” way to have cancer. It’s always terrible and it’s always supremely unfair, no matter how old you are or the circumstances. While it’s good to be positive, it’s also important sometimes to acknowledge this, especially as I supposedly had the “good,” easy-to-cure cancer.

I have had a lot of time to think—more time than I would like—after being woken up gasping for air this week, or waiting for the itchy rash to calm down. There was more I wanted to say, but I’m still not sure how to put some of the things of this past year into words.

As for the breathing, I am, of course, worried. I hope it’s nothing chronic or serious. Right now, all I can do is continue to make my cats’ dragon wings.

Though I cancelled my get-together, I am still making the dragon costumes. (If you’ll recall, I also made them Tortuga costumes for the Breaking Bad finale and they were the cutest disembodied heads on turtle shells that you’ve ever seen.) Tonight, I’ll put aside my pulmonary worries and instead focus on the fate of the seven kingdoms and Don Draper.

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.

?

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.

Forgiveness

Something strange has happened since my hospital stay and stem cell transplant. My ire is gone.

I just wanted the cancer gone, but the radiation or the four days of chemo seems to have removed some residual anger. I’ve wondered before if the stubborn spots lighting up on my PET scans were angry words that I swallowed and lodged in my trachea or the molten glow of my temper in my gut.

I joke that Seinfeld’s Frank Costanza is my spirit animal, because when I try to calm down, it’s basically as effective as angrily shouting, “Serenity now!”

Part of my lessened anger, I realize, is because I haven’t been around people. I’ve been pretty isolated at home and at the hospital, where everyone was unfailingly nice to me. I know a few train rides will raise my blood pressure. But I feel as if I’m experiencing something more long-lasting than the peace of isolation. (As isolated as one can be in such close proximity to 10 million other people.)

I have a legendary hold on my grudges. My mental nemesis list is long and spans my lifetime. It includes Prince and the supposed friend who told my second-grade crush that I liked him. In the latter case, it’s not fair, because her last name rhymed with the word “beaver” and, unfortunately, she was bucktoothed, but I never made fun of her like the other second-graders. Why would she betray my confidence and scar me so I wouldn’t reveal my crushes to anyone again until I was 14 and started dating? I can picture her triumphant, toothy grin after her big reveal.

I still feel a flush of humiliation thinking about that day. (I think the guy in question transferred schools the next year—not because of me—and I saw him as a freshman at Ohio University during my brief time there before I transferred—not because of him. But I still felt embarrassed when I saw him a decade later.)

As you can probably tell, I take things pretty hard. I joke about it, but often I can think about an instance where I felt wrong or hurt and feel just as angry or upset as when it actually happened. It’s something I don’t like about myself. Also, it was no fun to feel those things the first time, let alone again. And again. And again.

That’s not to say I don’t get over things or that I don’t forgive people. True, it’s pretty easy to get on my nemesis list, and it’s pretty hard to be removed. It might involve a jar full of the offender’s remorseful tears. Or, more often, a simple, “Sorry.”

But how do you forgive someone who never asks for forgiveness? Or—even harder—how do you forgive someone who truly believes the way he or she treated you was justified? That’s so hard. For me, bearer of grudges, it’s almost impossible. I’m still working on it.

I may never be able to look my second-grade crush in the eye should I ever see him again, but I forgave that girl a long time ago. Yet that day in second grade was probably the first time I was blindsided by someone who I thought was a friend suddenly and inexplicably turning on me. It happened again when I was 20. And 22. And 24. And 31. And 32. Probably some times in between all those too. I guess I don’t learn.

If you think I haven’t worried that I’m the problem, don’t worry—I’ve given it plenty of thought and therapy sessions. At one point in my 20s, someone who I would say was truly malicious drove a wedge between me and some other friends. She was so skilled at it, and I felt so raw and hurt and vulnerable. I let other people make me feel as if I were a bad person and if I were crazy. Looking back, I can say that’s crazy.

Luckily, I had other friends who reassured me that I wasn’t insane or a terrible person. But I was pretty broken. I even went to therapy for a while to put the pieces of myself back together—and reassemble myself as a more confident person. In a way, that girl did me a favor.

I realized a lot of those people who hurt me were insecure about themselves and tore me down in an attempt to feel better. I have my own insecurities—less after this cancer battle—but I certainly have had plenty over the years. When I recognized insecurity in others, I saw a kinship with the hope we could boost each other up. Everyone’s insecure about something. But when it’s someone looking to belittle someone else—well, I might as well have a big target on my back.

Yet it’s so hard when someone you trust tells you something she believes to be true about you to not take it personally—even when you realize, on some level, the situation is really about her (or him).

I’m pretty gullible at times. It’s dangerous when someone I trust tells me something terrible about me that isn’t true.

I obviously tend to dwell. The other day, though, I found myself reflecting—not dwelling—on some past relationships with family and friends. It felt different to reflect. I thought about things without the anger.

I was really thinking about wasted time. Since the things I can do post-transplant are still very limited and I’ve been limited to varying degrees for almost a year-and-a-half, I reminisced about being well—but I also remembered feeling terrible at times. Mostly, this was because I was dwelling on a past hurt or wrong, making it last much longer than it had to. In some cases, instead of letting myself heal from someone’s words, I picked at it, like a scab, until it became a giant wound.

I regretted the time I’d lost to feeling bad about myself. Wasted time wasn’t any time spent with friends. Or moments spent rubbing the belly of a cat when I had other things to do. It was time I’d stolen from myself. Now that cancer—something that both is and isn’t me—has stolen time, I’m more protective of it.

Poet, author and activist Maya Angelou died today, and the Internet was peppered with her words of wisdom. I read a long quote about forgiveness, and Angelou certainly had a lot to forgive (and a lot to say on the subject). One of her well-known quotes: “It’s one of the greatest gifts you can give yourself, to forgive. Forgive everybody.”

I’m not going to forgive people for them. I’m going to do it for me.

It’s still really hard, even with less ire.

Could this be a good side effect of the chemo? With so much poison coursing through your veins, there’s no room for additional poisonous thoughts and feelings? Could I have been hanging on to anger in the marrow of my bones? Bones seem like as good a place as any to harbor resentment, being hollow and all. I would think organs or even muscles are too soft for hard feelings. The stem cell transplant was supposed to be a re-birth of sorts.

I have to confess that there’s also something else about forgiveness that appeals to me. If you tell someone who hasn’t asked for forgiveness that you forgive him or her when that individual doesn’t admit to any wrongdoing, there’s a good chance it will really annoy that person.

OK, so maybe the old me isn’t completely gone. For now, I hope that the cancer has left, along with my ire. If not, I have to remember that I can control at least my recurring anger, my emotional cancer of sorts.

Photo note: When I’m in doubt of what type of photo to put up, I use a cat photo. I forgive this particular cat on a daily basis for something, almost immediately, because—well, look at that face!

A Return to Working Out (Plus a Cockroach)

It feels good to put on workout clothes again, even if it’s just to do a 30-minute walking DVD or stream a yoga for cancer patients practice.

I’m especially excited to just move again and work up a bit of a sweat. The thing with feeling pretty good post-transplant is that it’s easy to overdo it, so I still have to remember to take it easy. I overdid it a bit on Tuesday and I was asleep by 10:30.

It’s humbling how much strength and flexibility I’ve lost, but I just have to start slowly to rebuild. I have to admit, the trainers in the beginner workout videos are more gentle than the intermediate or advanced levels. Leslie Sansone just wants me to walk and do some bounces, unlike Jillian Michaels, who wants me to “feel like you’re going to die.”

This post isn’t really about my triumphant return to working out or the long journey I have ahead of me. It’s about the momentary terror I felt this afternoon, after I unrolled my yoga mat.

As I looked forward to stretching and finding some inner peace, I was confronted by my mortal enemy, which fell out of my yoga mat. (No, it wasn’t Prince, though he is tiny.)

When I spread out my mat after months of not using it, out fell a cockroach.

We rarely get cockroaches in this apartment, but if you live in New York City, you’re probably going to come across a stray roach or two. I find that most of them seem to by the doors, but they’re pretty big, so I guess trying to sneak in through a smaller space isn’t an option. It’s like Gregor from The Metamorphosis is coming for a visit and has to knock. A former co-worker was once shocked that a roach made it into her doorman building—she kept emphasizing the doorman part, as if vermin have to be vetted at the front door. But it seems as if the larger ones do just waltz in like an uninvited guest.

I’ve presented people with the following question: Which is better, big roaches or small roaches? Most people will say big cockroaches, because they’re easier to find, plus an infestation of small cockroaches seems to mean they’re more bountiful. Also, many people—especially New Yorkers—seem to have a very specific vermin hierarchy of worst to “best” for having in one’s apartment.

I live in fear of coming across cockroaches, but it’s a terrible way to live, so I eventually let my guard down. That’s usually when one makes a dramatic appearance.

Cockroaches seem to choose to present themselves specifically to me. People I live with rarely find cockroaches, while I’m convinced they specifically sacrifice themselves every now and then to torment me.

In my early 20s, when lived close to The Ohio State University campus, I was plagued by sightings, while my two roommates never saw them and dismissed my complaints. I was telling a friend about this recently. “So I started to leave the roach bodies around for him to find,” I explained. “He didn’t believe me.”

“Oh, I see,” she replied. “He was the one being unreasonable.”

I never said I was a good roommate.

My theory is that I was responsible for the death of the Cockroach King, and since then, cockroaches have been trying to avenge the murder with intermittent psychological warfare. I was in Portugal when I remember seeing my first cockroach. We were on a family vacation, and I was 4 years old, walking down the street and holding my mom’s hand when I was stopped in my tracks by the biggest, ugliest bug I’d ever seen. I screamed so loudly that my mom said everyone stopped what they were doing. I was wordlessly pointing to the offending, terrifying creature. “Oh, it’s a cockroach,” my mom said. My grandpa heroically stepped on it.

This cockroach was undoubtedly the Leader of All Roaches. Since then, I’ve been able to sense when a roach is considering me with its horrible antennae. I’ve showered with cockroaches in Mexico. I’ve pulled a dead cockroach from my mouth at a restaurant. (It was buried in some rice, and we knew the sanitary aspect of this particular place was questionable.)

This afternoon, it was my terrified cockroach-specific scream (lower than my mouse scream) that my boyfriend heard when I saw a roach on the floor. He always seems alarmed at my cry, then annoyed that it’s just a cockroach. After eight years, he still doesn’t understand the subtle nuances of my vermin screams.

I stood frozen in place until my boyfriend got the Raid and sprayed. When he hit the bug with the insecticide, the roach moved. But it was from the blast. The cockroach was already dead. It had crawled into my yoga mat and died just to spite me, in one last act of defiance.

Thankfully, the yoga helped to calm me down and get rid of the post-roach heebie-jeebies. When I was supposed to close my eyes and look inward, however, I kept one eye open—just in case.

Freak

After going to high school during the “alternative” craze of the ’90s, I was goth during my late teens and early 20s. I wanted to be a freak. Ministry’s “Every Day Is Halloween” was my anthem. I wore all black. I had vinyl pants. But I never was one of those people who would dress head-to-toe goth all the time, because I’m lazy when it comes to fashion. (Hence the goth thing—all black—versus a counterculture that would require more color coordination.)

My rebellion was only part-time. But I reveled in throwing my differences in the face of the world, even as I copied the looks of others. I started dressing weird in high school to scare people away so they wouldn’t bother me. It worked, for the most part.

I’ve always wanted to stand out and blend in at the same time.

I’m still not quite sure what I was rebelling against. Other people? I still wear a lot of black. Everyone in New York City does, so I feel as if I’ve really arrived home.

But I think my freak past is why losing my hair and looking kind of weird hasn’t bothered me as much as it does some cancer patients. I’ve gotten double-takes on the streets before. I’ve stood out in a crowd. (Unless it was a crowd of other goth people, and then I just blended in to the sea of black, achieving my delicate balance of standing out among the masses and blending in with my counterculture brethren.) Even after I stopped wearing so much black, I’d still wear some crazy outfits.

Now I look like a freak again. I’d forgotten what it was like. In New York, it’s pretty hard to get people to do double-takes. People are pretty conditioned not to look at you too hard unless you’re really going out of your way for attention. It’s not a bad place to look a little different. But I do notice people looking at me and then looking away, not wanting to stare at my bald head or my lack of eyebrows and eyelashes. I should make more of an effort with a wig, but eh. And I’m not going to draw on my eyebrows unless I really want to look like a freak.

Every now and then, I get the “Oops, I shouldn’t stare” look.

Sometimes, when I’m feeling nasty and I’m full of self-pity, I have that old feeling of rebellion, and I want people to stare. I want to remind people that, out of nowhere, something crappy can happen and turn your world upside down. It’s such a mean thought, and it’s erroneous to think that everyone walking around with hair has a charmed life. As I noted, I’ve been trying, at least, to remember that Ian MacLaren quote: “Be kind, for everyone you meet is fighting a hard battle.” That person who looks physically fine (who I might be unfairly resenting) might feel worse than I do or might feel terrible inside and I’d have no way of knowing. People who look well aren’t my enemy; my toxic thoughts are the problem.

Before I had cancer, I would sometimes sense—maybe wrongly—resentment every now and then from people who thought I had a charmed life. Not often, but every now and then, I’d get a whiff of resentment—a snarky comment, an undertone of bitterness. I wouldn’t even blame them—I often wondered if I had it too easy, or if I needed to be tested by something. I know now that I didn’t. I’ve had my internal battles.

Irrationally, sometimes I hope that I paid for good things to happen with this past year and that I can resume a life where things seem to fall into place for me.

Because things sometimes do seem to fall into place for me. I’d consider myself lucky, but I wouldn’t leave everything to fate. I’ve worked hard. It’s not like I’m undeserving of happiness.

I do have a gift, though—or gifts, I should say. Sometimes I wish for something and I magically get it. It’s always something random and very specific. For instance, I soaked my Converse once at SXSW and really had no shoes to wear, and at the next event I attended, they were giving out free tennis shoes. One morning, I wished for a hair blow dryer, and that night I got invited to an event where they gave out gift bags with free hair dryers. I’ve sat at my desk and wished for ice cream and had a co-worker pop her head into my cubicle, offering me a sundae she bought and didn’t want. I forgot deodorant on a trip back to Ohio, and before I could buy some on my way back from yoga class, I discovered a basket of free deodorants right by the door of the yoga studio. I have a lot of stories like these. It’s like, every now and then, life gives me a free gift.

I can’t wish for a million dollars. It has to be something small in order for my wish to be granted, and I can’t summon it to happen. I have to be not expecting to magically get what I want.

I already know I can’t wish the cancer away. I just have to hope—like everybody else—that this last treatment was successful.

I also know that I really don’t want to be some sort of sad reminder of mortality to people who see me in all my bald glory. (And I know I’m too lazy to always wear a wig.) I hope people just see me as a fellow person fighting a great battle along with everyone else. I’m finally standing out, like I always wanted, but I’ll be happy to blend in again.

Photo note: This photo is from my goth days. In the full photo, I’m looking up and smiling at a friend who has spiked his hair completely up before a Bauhaus show in Chicago.

What I’ve Lost…and Gained

After months of illness, it’s hard not to sometimes bitterly take stock on what you’ve missed out on. Today, I heard about something else I can’t attend while I have the immune system of an infant, but I’m OK with it. Other opportunities will arise.

There are some days when I’m not OK. I’m tired of being poked and prodded and not getting on with my life. The most frightening thing to me is the thought that this stem cell transplant and radiation didn’t eradicate the cancer and there will be no getting back to “normal.”

I don’t want cancer to become my life. But for some who have stubborn cancers, it can end up being something you live with for a while versus something you get over. I’m not sure if I’m strong enough to do the former, but there’s a small chance I might.

What I’ve lost, I can get back—for the most part. I’ve been robbed of some time. But when I look back at what I’ve lost, I can’t help but see what I’ve also gained. Not that I’m one of those everything-happens-for-a-reason people. I honestly don’t think that everything happens for a reason. If anything, I’ve always personally been more of an existentialist.

I’ve said this before, but I don’t think I needed to get cancer to give me any fresh perspectives on life. I was doing just fine. Dealing with this has changed me a little bit, but I still don’t think it had a profound impact, not one that I can tell. I already appreciated life and what I had. I didn’t need to slow down. I didn’t need this.

That’s not to say I didn’t learn anything, though. It doesn’t mean I can’t see some silver linings to my clouds. What have I gained? Most importantly, I hope it’s a cancer-free prognosis. I’ll find out in August if that’s the case. After more than a year I’ve treatment, I’m beyond over Hodgkin’s lymphoma. I just hope it’s over me.

What I’ve gained:

Mental strength. I’ve lost weight, and most of it is muscle. When I look at my wasted body, I try not to mentally calculate the hours in plank or in utkatasana it’s going to take to get me back to form. Right now, I’m walking to keep my energy up, and I’m probably going to start to do walking DVDs and extremely gentle yoga.

What I’ve lost temporarily in physical strength, I’ve gained in mental strength from enduring the treatments. As I mentioned before, I was perfectly happy suspecting I might be weak if it meant I could go untested. It turns out I have a little bit more fortitude than I thought.

I’m extremely squeamish. I don’t faint at the sight of blood or anything, but I generally don’t like to think about bodily functions or fluids or anything to do with the inside. But I’ve endured things like tubes in my chest and IVs in my arms. I’ve given myself injections. I can do some of this squeamish business; I still would prefer not to.

A sense of hair adventure. As I mentioned, I feel smug and superior when I see women’s beauty advice pop up in my Facebook feed, since it no longer applies to me. I don’t need to know how to have glossy, voluminous hair or know how to get curly, long lashes, since I have no hair or lashes.

Of course, I never worried about it much before, either, so my hair loss really hasn’t bothered me much. I would wash my hair and occasionally brush it, but I would never blow-dry or put any products in it. Sometimes I’d get a dreadlock and cut it out. I feel like there was some sort of session about being a woman and caring about beauty concerns that I missed as an adolescent.

I didn’t wear makeup until I was 25, at the urging of a friend who told me it was good for job interviews and looking professional. She took me to a few beauty counters, where I discovered they make you up for free (!) in hopes that you buy their products. I feel obligated to buy everything from people who work on commission, so I never take advantage of this. Anyway, that’s how I’ve applied makeup since—just simple eyeliner, shadow, lip gloss and blush. I draw the line at concealer because I don’t see the point of putting something that looks just like my skin over my existing skin. If I’m going that far, why don’t I just wear a mask and call it a day?

I stopped wearing makeup at 13, because I hadn’t known how to apply it. I’d put eyeshadow on my eyes and then, inexplicably, I’d put a swath under my eyes. No one told me I was doing something wrong until a fateful day in the lunchroom freshman year of high school, when a well-meaning friend asked me what was wrong with my eyes. I’d put pink eyeshadow above and below my eyes, creating bright pink rings. For some reason, I thought this made me look better.

“Nothing,” I said.

“But your eyes are all red,” she insisted.

“That’s my makeup,” I replied. It then dawned on me that I really must look like something was wrong with my eyes, because she seemed genuinely concerned.

“Oh,” she stammered. I must have looked hurt, and I think my other friend must have looked defensive on my behalf. “I just thought… It looks… I didn’t mean…” I will take the apologetic look on her face with me to the grave. Now she thought that I thought she’d insulted me on purpose. It was that point where someone has accidentally insulted you and that person visibly feels so bad that you feel worse for the person than yourself.

What she did, however, was helpfully shape my life for the next dozen years. I went to the bathroom, looked at myself in the mirror and washed off my makeup and didn’t put any on again for more than a decade. I didn’t know how to wear makeup, so I just mercifully stopped. Sometimes I’d dabble, but I had no interest in really learning, until my friend took me into the mall to finally help me learn how to apply makeup.

So my beauty routine falling by the wayside is a bit of a relief. I’m not big on wearing my wig. All my little cancer hats are in the wash, so I’m wearing a do-rag like Bodie Broadus from The Wire, and I’m totally fine with it. I’ve been tying my do-rag with a bow in the back, and I’m kind of hoping it catches on in the street. I’m going to sit out on my stoop more so the guys from the neighborhood can see and emulate.

I wish I could say that my aversion to makeup is some sort of feminist statement, but I’m just lazy. Also, I believe in setting expectations low. When I do wear makeup, people compliment me on how great I look. (Almost to the point where I wonder how hideous I may usually look, but just shy of that point.) My attitude is: This is what I really look like. Deal with it. If you’re special, one day I’ll make myself up nice for you.

This is what I look like now, and I’m OK with it.

I think I look OK. I’ve looked better, for sure. But I probably looked worse when I put eyeshadow under my eyes. That may have been my low point.

As someone who has had the same hair style forever, this has made me more adventurous in that department. I’m looking forward to trying short hairstyles, like that girl from the Halt and Catch Fire previews (but brunette) or maybe the Claire Underwood (but only if it makes me ruthless).

A sense of mortality and health. This one’s tough. When I was getting the radiation explained to me months ago, I almost cried when the nurse told me that I’d have to eat heart-healthy and exercise for the rest of my life.

It wasn’t the eating plan and workouts that made me sad. I eat generally healthy anyway, though I eat more candy than I should. (If I could sustain myself on sugar, I would.) And I enjoy working out. It was the permanence. For the rest of your life. The radiation doesn’t come without consequences—and they’re lifelong. My heart and lungs are a little weakened from being zapped. I’m at higher risk for some cancers later on.

I’m losing things that won’t come back. I might go through menopause very soon. I have to take extra efforts to be healthy because of what my body’s gone through. Things got real right then.

Even more perspective on how great my friends are. I’ll lose some gardening time this summer. As it turns out, everything I love—cats, gardening—can give me toxoplasmosis. I’ve gained some garden helpers who I can supervise over my garden plot this year.

In fact, I’ve gained a lot of help and support—more than I ever expected. The outpouring of kind words has been humbling. I don’t know what I did to deserve such a great group of friends, but I’m going to try to keep doing it. I’ve been inundated with cards, thoughtful little gifts and well-wishes. And, in many cases, it’s been from people I’m not always in touch with, so it’s been nice to reconnect with people. Even though the Internet is junky and boring these days, I’m grateful that social media lets me be in touch with so many people. Being sick is no fun, but it’s really shown me what a great network of support I have around the world!

First Post-Transplant Doctor Visit and New Accessories

I’d just been thinking it had been awhile since I bought any fun accessories. Today, I bought a MedicAlert bracelet and necklace so that EMT workers know all my blood products must be irradiated. I’m not even quite sure what that means, so I asked a friend who is a phlebotomist.

“It’s kinda cool,” he says. “You take the donor blood, bag and all. And toss it in to be given a nice dose of gamma radiation….kinda like The Hulk.” I knew it.

“The big reason for irradiating blood is to get rid of white blood cells that may still be in the blood products, especially lymphocytes,” he explains. “It may be a little confusing, but here goes: Lymphocytes are a huge part of your immune response. Josie’s cells are very gullible right now. She has lymphocytes, but they don’t remember the rules just yet. They don’t know what is foreign to her body. They’ll figure it out, will just take some time. If she gets a donated lymphocyte in her, it may proliferate. OK…so you have these foreign lymphocytes in Josie’s body, they don’t recognize Josie, so they decide to attack her. You get more and more foreign lymphocytes, and they attack more and more vital organs. It’s called Graft Versus Host Disease (GVHD). GVHD is rather rare, but when it does happen, it can be fatal. That’s why they take such precautions. People with competent immune systems (the rest of us) have nothing to worry about if we get blood products. If we get a stray lymphocyte or two, our bodies’ bullies will squash them.”

So I have to get Hulk blood for the time being. Hopefully I never have to use my MedicAlert anyway.

I visited the doctor yesterday, and the news is all pretty good so far. My counts are great, so I’m on the road to recovering from my stem cell transplant. It’s just going to take some time.

In the meantime, I still have to take those precautions, like avoiding people and raw fruits. The really good news is that I don’t have to avoid the cats as much. They are going to the vet to be tested for toxoplasmosis on Saturday, but since they’re indoor cats, it’s highly unlikely they have any parasites. I’m still not to empty the litterbox in the coming months.

Upon my return home, the cats acted as I expected. The less-bright-cat-who-loves-me-more hopped on my lap and purred and has generally been unfazed by the ban on my face. He’s too clumsy to really cuddle—prone to falling off laps and chairs—anyway.

The other cat eventually accepted me as part of her territory again and this means I have no rights to space in her eyes. I am hers, not the other way around. So if she wants to jump on my face in the middle of the night, it’s her right.

We successfully kept her locked out of the bedroom for a few nights. When my boyfriend got up to take a shower, however, I awoke to a wet nose against my cheek and a sandpaper tongue on my head. We agreed that she seemed to think we were trying to keep the other cat away from us, because depriving ourselves of her company was surely a mistake—one she tried to correct by pawing at the door and meowing to alert us that she, too, had been erroneously locked out of our bedroom. It was heartbreaking for me. My boyfriend reassured me that the spoiled cats won’t be scarred by a few months of me not petting them as much.

The cat’s endearing cuddling habits had become a liability, so I’m glad the restrictions are somewhat lifted by my doctor. Staying away from cat poop is easier than staying away from the cats themselves.

Another bit of good news it that the doctor wants to switch me from Lovenox subcutaneous blood thinner injections to Rivaroxiban pills. After almost three months of giving myself injections that slightly sting twice a day—and three months to go to get rid of this pulmonary embolism—I’m over the Lovenox. My abdomen is full of hard spots from the injections, and I’m looking forward to not giving myself shots every day.

Other than that, I just need time to heal and regain my strength. To help the time go faster, I also got the OK to work from home. I have to walk more, but the weather still isn’t quite right for neighborhood strolls. I might try my walking-DVD-for-older-people this weekend.

Now that the restrictions on the cats have been relaxed, I can finally take my cat out of this box.

Recovery Activities

I’ve been home from the hospital for three days, and it seems there is a finite amount of TV you can watch and books you can read. I’m not much of a movie-watcher. I’ve always had problems committing to two hours. I blame MTV, even though I didn’t have cable until college. I do love to read to the point where I can be motionless all day with a good book, but I feel the need to interact with people. Yet I can’t, at least on a grand scale, while my immunity is compromised. Hence the blogging, when I barely have anything to say.

The catch with this free time and time off is that you can’t actually do a lot of the things you say you’d do with your free time. I can’t do any heavy lifting or drinking (or even normal eating, come to think of it) or be around people. It’s limiting. Not that I’d be drunk during all of my free time. (Or would I?)

During my recovery, here are a few ways I’ve been spending my time.

The Internet. Obviously. Here I am. As someone who works online, though, I feel as if I’ve seen everything there is to see on the Internet. It’s cluttered and junky these days. I have a pretty good grasp and an informed opinion of what happened between Jay-Z, Solange and Beyoncé after the Met Gala. What’s left, really?

Everything is peppered with ads and false promises. If I see one more Upworthy-type headline, I’m going to implode. I never click on them, just to be contrary.

Women’s content also tends to be somewhat inane. I feel smug knowing that I don’t need any of the tips to tame my hair or get shampoo-girl hair or do anything at all with my hair, since I have none. I also don’t have to worry about my bikini body for awhile. (Phew!) No wonder I have so much extra time on my hands.

Since I’m not working and reading online, I find myself inadvertently proofreading things I come across and mourning the loss of copy editors. With skeleton crews of publications these days, it’s been a long time since I could walk into an office and have an impassioned discussion about the serial comma with someone. Alas.

Working. Speaking of which, I just started working a little bit yesterday, just because an old company I worked with was in a jam and needed some last-minute, easy help. So at least I got paid for some proofreading.

My fellow editorial friends will know how much this pained me, but it was the first time I’d proofed copy since AP overturned the over/more than rule. (For those not in the know, “over” referred to space and so saying something like, “over three years” has been incorrect, as it should be. But the Associated Press recently caved to popular usage.) Yesterday, for the first time ever, I read phrases like “over two years”—and just let them be. (We’re talking about five instances.) Between Antarctica melting, the bees dying and this AP ruling, I think we’ve totally blown it as a civilization.

I know, I know. I’m not supposed to be working, even if I am doing my part in saving the world from errant apostrophes and grammatical errors. But it’s not like my work involves heavy lifting. I still haven’t gone back to my near full-time gigs, because I don’t trust my brain yet, slowed by morphine and poison for the past month. For now, I trust myself only with my own musings here and the garden blog updates.

When I see the doctor later, I’m going to ask him about working. I don’t think it’s dangerous, like I’ll blow a mind fuse. I think the not-working-for-two-months rule is for people who have to interact with others and don’t work in their pajamas.

Also, I realize there may be mistakes in this post, but I’m off the clock.

Crocheting. Warning: If you receive a soft, bulky package from me in the mail, it probably contains a poorly made scarf.

I recently rediscovered crocheting. People often get crocheting and knitting mixed up, but the main difference is that crocheting is way easier. I don’t understand people who knit to relax. To me, it’s the craft equivalent of doing a spreadsheet. If you make a mistake in knitting, all is lost, but crocheting allows for you to be messier if need be. I don’t like a lot of thinking when I’m doing something crafty—that’s why I prefer crocheting over knitting and embroidery over counted cross-stitch.

I’d heard that I wouldn’t be able to read or even watch TV much in the hospital, but I didn’t crochet as much as I thought I would. One day, however, I put on a mix CD a friend sent and crocheted and felt somewhat human again.

In Like Water for Chocolate, the main character knits every time she has man trouble, and she ends up with a giant blanket. I pictured some sort of cancer afghan for myself. But I had only a few balls of yarn, so I decided to finish it up to make a scarf or two. The problem was, I didn’t have enough yarn, so I had to buy more yarn. But that didn’t quite match, and I ended up with even more yarn. Pardon the pun, but it really spun out of control. Once I started buying yarn, I couldn’t stop. I was wondering what to do to support my habit. I thought about raising sheep.

I come from a family of crafters, so I should have known getting into the yarn thing was a dangerous business. The yarn that I’d bought at the garden tag sale was a gateway.

My mom and grandma had tons of to-dos and projects to make, from embroidery to knitting to rug-making to weaving to tatting. My mom and I both worked at craft stores as well, feeding the habit.

So far, I’ve made six scarves, and I think I have about five more to go before I exhaust the yarn supply and call it a day. And yes, it’s always scarves, because they’re easy. It would be cool to be able to know how to crochet Star Wars mini figurines, but that just seems like so much work. I’m a lazy crafter.

Now, however, I can comfortably foist my handmade goods on my friends with a side of guilt. Here, I made this for you while I had cancer. People must accept my gifts for this limited time.

Luckily, it’s just warm enough that they won’t have to wear them until the fall.

Home Again

So I’m home! I checked in to Memorial Sloan-Kettering Cancer Center on April 13, and I checked out on May 12 around 2 pm. After a month of radiation, chemo and the auto stem cell transplant, I hope to be cancer-free when my next PET scan rolls around in August.

I can’t express enough gratitude to my family and friends for all the support the past month. Thank you for the gifts, cards and the words of support. They truly sustained me during my time in the hospital, whether it was a gossip magazine to read while I was climbing the walls or Easter candy when I could still eat or an email telling me to hang in there.

I’d also like to thank the staff of MSKCC for taking good care of me and being unfailingly nice and understanding during an extremely difficult time. This includes the doctors, nurses, food staff and cleaning crew, who all made me feel as if I was in good hands and listened to. I do miss my afternoon tea service and bedside yoga. I never want to go back, for obvious reasons, but it’s as good a hospital experience as you can hope for. Also thank you to the nurses who had to re-introduce themselves to me after taking care of me during my post-transplant morphine haze. Even if I can’t remember much, the care given to me during that time doesn’t go unappreciated.

Here’s a long update, broken down into subcategories. Now that I’m recovering, I don’t expect to abandon my blog, especially since I still haven’t returned to work.

Panic disorder scare and Ambien. By Monday, I’d regained my sanity, but had been having trouble sleeping my last few nights in the hospital.

In fact, I took Ambien for the first time three nights ago, as well as some Ativan to quell some panic feelings. As someone who used to have panic disorder, I felt the sleepytime panic jitters. I’ve been through a lot this past month. I keep forgetting that all the drugs, from the Ativan to the morphine, might have me feeling a little off. I was especially worried that my panic disorder would return, but thankfully, I was just afflicted that night.

A word to those who want to tell me to just calm down or not worry: Thanks for your well-meaning advice but that’s not what panic disorder is. Asking me to will my panic symptoms away is kind of like asking me to will my cancer away. If I would, I could, but panic disorder and panic attacks are physical conditions.

Sometimes, people say they’re having a panic attack, but they are just freaking out. A real panic attack feels like you’re dying and losing your mind at the same time. I wouldn’t wish it on my worst enemy. Not even my celebrity nemesis, Prince. (It’s a long story, but in my version, I emerge victorious over him, of course.)

Panic attacks are basically your body’s fight or flight response. The problem is that it happens with no obvious trigger. One moment, you’re waiting to get your tire changed, the next moment, your heart is racing, your extremities are numb, you’re sweating, and you feel like your brain is trying to leave your body in a weird, dissociative feeling. It’s a natural thing that happens at the wrong time.

The worst part of panic attacks, though, is that no one understands them and thinks you can somehow calm yourself out of them. People understand cancer, but when you have panic disorder, you often get a lot of side-eye. Or well-meaning, but misguided advice to just get over it.

Anyway, I always go out of my way to try to explain panic disorder—when you keep getting panic attacks over and over again—to people. Granted, some of it is mental. With panic disorder, you worry so much about having another attack, you create triggers for yourself and end up having attacks. People with panic disorder often become agoraphobic, because they’re afraid to go out and have panic attacks, or alcoholics, if they try to self-medicate.

I was dangerously close to the latter, before some cognitive behavioral therapy and medication. I finally got through my panic disorder, but it’s not something I want to revisit.

I’ve been avoiding taking Ativan, because of my old panic issues, although it helped during the stem cell transplant. It’s also offered to quell nausea, but I’d usually opt for the alternative. Also, knock on wood, I rarely have nausea. The weight loss I’ve experienced is from indigestion and general esophagus trauma from the radiation.

Yet three nights ago, I found myself taking Ativan and Ambien. The latter also makes me nervous. “What if I drive?” I asked the nurse who came in to administer the Ambien.

“Well, you’re in here, so you can’t do much,” she pointed out. I would have to disconnect myself from my medication pole somehow and then steal a car to drive out of the hospital. Still, I worried I’d go crazy and rip out my IV or just generally be a weirdo. Since the staff had seen me having morphine conversations with myself, though, there’s not much more I could to in the weird department.

People do some strange stuff on Ambien, though, from cooking meals to shopping. One of my favorite writers, Laurie Notaro, dreamed up a fart chart that she included in her latest book. I don’t have that kind of comedic genius in my subconscious. Ambien made me think about sleep, really think about it. Like I wondered where my servants would also sleep. (I suspect my subconscious Ambien self is a Gwyneth Paltrow type.)

What if I tried to start an uprising and liberate my fellow patients? That seems like something I’d try to do. The nurse added that it’s the lowest dose of Ambien they give out.

I finally, blissfully, fell asleep and to my knowledge, didn’t exhibit any weird behavior. I took it for the few following nights, but I think I was stir-crazy. By the last night, I reversed my bed so my head was at the bottom and my feet were at the top, and I slept about three hours. I was also Christmas-morning eager to go home, so that factored in.

I slept Ambien-free last night, in my own bed, with my squishy pillow. I hope to get back to normal sleeping once my throat heals.

I had my line pulled. What does this mean? No more leukapheresis catheter! I’m line-free. Not attached to anything. I don’t have tubes poking out of my chest.

What I did have, however, was a major case of the heebie-jeebies. If you’re squeamish, skip ahead. To take out your line, they just snip the stitches and yank it out. That doesn’t seem right, but there you go. Yesterday, I had breakfast and then a shower and went straight to IR to have my line removed. I was going to break my Ativan rule and ask for it, as long as it was being offered, and my squeamish self was going to have a tube yanked from my chest. But I didn’t have time. They assured me it would be quick.

Luckily, I didn’t have to stew in my own squeamishness long before the doctor arrived. He matter-of-factly informed me about the snipping and pulling. I refrained from asking him an inane question, like, Are you sure this is the best way? I did ask, however, “Will this be gross?” He said no and was mostly right.

Since my line had been in for almost two months, he was concerned it wouldn’t want to come out. This concerned me too. He snipped and tugged. It didn’t want to come out.

He then gave me some lidocaine shots (ouch, a little), and then did some snipping with scissors. Finally, it came out, and I am free. I am still squeamish about the whole thing, though. I won’t be entering the medical profession anytime soon.

Release. Hi again, fellow squeamish people. After my line was pulled, I had some instructions to listen to and some medications to go over. At 2 pm, I was released. Finally.

I can eat only ice cream. Well, mostly ice cream. There are worse fates, I suppose. To get released, I had to show I can eat 1,000 calories and drink at least 1.5 liters of water. It’s frustrating, because I usually can eat like a champ, and I drink water all day long.

The issue is my throat pain, still from the radiation. It’s difficult to swallow, and therefore, eat. I also still have somewhat painful burps, so eating hurts twice.

I’ve been having a lot of smoothies—specifically a hospital pediatric concoction called the Cranky Monkey (banana, coconut milk, yogurt and chocolate ice cream). It still takes me forever—well, hours, to drink one. Plain ice cream is the easiest thing to eat—nice and cold and melty. Mostly, I’m eating soft foods—mashed potatoes, milkshakes, yogurt, etc. Tonight, my boyfriend’s made me polenta. I am spoiled.

Yesterday, before I left the hospital, I couldn’t resist the lunch special, sesame chicken. I ordered a half-order and barely made a dent in it, but it was delicious. And it was nice to chew again. Once I can eat, I’ll be sure to pack on this lost weight. I’m hungry.

Also, as someone who didn’t and couldn’t eat, for several weeks, if you tell me you’re on a diet cleanse, I’m going to punch you square in the mouth and then you’ll see what not eating feels like. I’ve tried to be understanding about cleanses, even when I was a nutrition editor, but here are the facts: Your body doesn’t need a “break” from digesting. Right now, I’m recovering from my “break.” If you believe you are full of toxins, you are full of something, but not eating isn’t going to solve your problem. I’m not staying quiet about my cleanse feelings anymore. If you can eat something, then do.

“Probation.” Now that I want time to pass quickly, I have all the time in the world. I miss feeling like I don’t have enough hours in the day. I am eager to get back to work.

A fellow transplant patient whom I virtually “met” through the blog, said that while hospital was like jail, the next three to six months are like probation. I have to agree. The list of restrictions are long. Here are a few restrictions, as several of you have asked.

1. No crowds. I have to avoid crowds in a city of 8 million people. It can be done, but it’s tricky. This means no concerts, no movies at peak times, etc.

2. No germs. No sick people. I also can’t get vaccinated for MMR (measles, mumps, rubella) for a year.

3. No gardening. I just found this out yesterday. I am going to have my boyfriend do the garden dirty work this year, while I supervise. Looks like I’m planting mainly perennials this year. Actually, this might be the year I do the Orange Flower Experiment. Orange plants thrive in my garden, from nasturtiums to mums. I might just plant orange and green things this year and call it a season.

4. No fresh vegetables. I miss salads. But I have to be wary of germs, so I’m not allowed fresh vegetables or fruits, aside from thick-skinned oranges and bananas. And, of course, no sushi, oysters or anything that’s not thoroughly cooked. And no restaurants or take-out, at least for awhile. I’m lucky my boyfriend is a good cook.

5. No drinking. I can’t imagine ever wanting to drink again with the way my stomach is. But the time will come, just not at least for three months. That’s OK with me for now. Talk to me in two months. Some of my friends got me a cool bar map of NYC, so once I am back to my old form, I intend to use it wisely.

Still, probation is better than jail. So now, I wait. My counts are coming back up, but it’s going to take some time…and more patience.

Here is a photo of my cat genuinely confused by a card that looks like a hot dog. He even gave the card a few preliminary licks before giving up.

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