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.

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.

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.

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.

Stem Cell Transplant Soundtrack

Now that I’m home, I can work on important things like my Stem Cell Transplant Soundtrack. I’ve been thinking of songs through this whole process, from radiation through chemo and recovery to homecoming. Below is my list.

“Radiation Vibe” Fountains of Wayne

“Radioactive” the Firm

“Fade Away and Radiate” Blondie. This was the only radiation song I could think of initially. Imagine Dragons isn’t on here because that song is terrible.

“Poison” Alice Cooper. You’ll notice a lot of hair metal in this list. Why? Because hair metal is awesome. If Nirvana hadn’t happened, I would have happily spent my high school years as a metal girl. But grunge hit, and I couldn’t find my pointy metal boots at the mall anymore, so I had to buy combat boots and become goth. Actually, in latter high school, I was mostly goth, but since it was the ’90s, there was a lot of general alternative going on—think Angela Chase’s confused wardrobe in My So-Called Life. I’d wear flannels on top of my mostly goth outfit. Anyway, my point is, I would have stayed metal if I could have.

“Shot of Poison” Lita Ford. I love Joan Jett, but I think Lita Ford doesn’t get enough credit for being in the Runaways and just generally being a pioneering female guitarist. I’ve always been a little bit Team Lita. I think that because she dressed a little provocatively, she wasn’t taken seriously. (This video is an example.) I like that she Saran Wrapped her man in this video to keep him fresh. This video also made me remember that when I was a metal girl, I wore giant crosses, like Lita here, but much more clothing.

“Don’t Drink Poison” Le Tigre. This song by feminist trio Le Tigre is to make up for the writhing of Lita Ford.

“Church of the Poison Mind” Culture Club. I’ll never forget the first time I saw Boy George. It was the early ’80s, on a morning talk show, like Good Morning America, which my grandpa was watching while my mom and grandma got ready for church. I was probably about four or five. When Boy George’s image appeared with his name, I short-circuited. I couldn’t reconcile his long hair and makeup with his name. I stood there, transfixed in front of the TV, watching the pretty man. That I spent so much time later listening to androgynous musicians and men in makeup isn’t lost on me.

“Bad Blood” Ministry

“Love Like Blood” Killing Joke

“Bloodletting” Concrete Blonde. These last two songs are nods to feeling (and looking) like a baby Nosferatu while my mouth healed.

“Fever” Madonna

“Taste the Pain” Red Hot Chili Peppers

“Cure For Pain” Morphine. Morphine was a great band, and this song is very appropriate for the week I spent in a haze.

“Sister Morphine” the Rolling Stones

“I Want a New Drug” Huey Lewis & the News

“I Wanna Be Sedated” the Ramones. I am so glad I didn’t go to senior prom and saw the Ramones instead. I pretty much was bored at every single high school dance I ever attended, but I always ended up getting roped into going. At the time, I was still plagued by the thought I “should” go to my last prom, but I didn’t have anyone to go with, whereas I had three people to see the Ramones with me. If I would have gone to prom instead of the show, I would have regretted it.

“Comfortably Numb” Pink Floyd. I’m not big on Pink Floyd, but this is what morphine is like.

“Painkiller” Judas Priest

“Movin’ On Up” Primal Scream. Once I started feeling better, this is the song that immediately came to mind. Bobby Gillespie’s shiny shirt and the chorus’ bangs are very ’90s.

“Sea Sick” Love Is All. This is for when I hit my wall of not being able to be in the hospital.

“Things Can Only Get Better” Howard Jones

“Home” Iggy Pop

“Josie” Steely Dan. I nearly forgot this extremely appropriate one, but a friend posted it to my Facebook wall. I collect songs about my name, so it’s the reason I have a Steely Dan album and a Blink 182 album.

“Coming Home” Cinderella

“Home Sweet Home” Mötley Crüe

Pushing On

I need to change my attitude if I’m going to last here until Monday. I’ve realized the last few days have loomed longer than the past several weeks. I have gotten back some of my inner peace, I suppose.

I’m a teary mess lately. Who installed these feelings? Today, I teared up thinking about last Mother’s Day, when my mom visited and accompanied me to an ABVD chemo treatment. We also went to brunch and the botanic garden. That seems so far away after this year’s journey.

When someone today asked if I was a mom, it reminded me that I might never be, and that also brought on the waterworks.

Last night’s episode of Star Trek: The Next Generation also brought on tears. It reminded me of my mom watching reruns and me going off to meet high school friends. Simpler times. What is wrong with me? Nevertheless, I called my mom to tell her I miss her.

So nothing is safe from sentimentality. I sit here now, greased up like an aging, overdramatic starlet in an old film. The hospital air is so dry, I have to put on a healthy dose of Eucerin cream on my face and scalp.

I tried sitting by the window now that the sunshine is back. What’s amazing about New York City, a metropolis of 8 million people, is that you can have a sweeping view of the city and not see a soul. I know First Avenue is bustling, yet I can’t see any actual people, just buildings.

So far, I’ve seen two people—a woman and a child. I’m so thirsty for human goings-on that they scurried out of view before I even had a chance to finish wondering about them. Is he excited for Mother’s Day? Did he make her something or buy her something? Does she know what it is? Will she have to act surprised? Where were they going?

But they were out of sight quickly, leaving me alone to gaze upon my empty-looking metropolis.

Looking to my left, there’s my world—my medication pump, my hospital bed and a window to the hall, where I see doctors and nurses pass, as well as other patients pushing their own pumps, often supported by relatives. We push on.

Finding Strength

As I may have mentioned, I am beyond antsy at this point. The latest is that I’ll be here through the weekend. Maybe I’ll be released on Sunday at the earliest, but it’s not likely.

Much thanks to those who have agreed to visit and to try to keep me sane, as I climb the walls.

Today, I may venture to the patient lounge on the 15th floor just to get out of my room and see what’s happening. Last night, someone knocked on my door and offered a guitarist to serenade me. It’s a cool idea, but I’m weird about musicians/performers being able to see me, so I deferred to another time.

Thanks, too, to all of those who have offered me words of strength—and encouraging words about my own strength.

The thing is, I never wanted to be strong. Often, I worried I was weak. I hoped I would stay that way, untested by life.

When I looked at my somewhat charmed life, I feared I skipped a step. Had I done something to deserve these amazing friends? This life, rich in experiences? A career I loved? The love of my life? Did I need to suffer first? Work harder?

I sometimes worried that I hadn’t earned what I had. Now I know that’s not true. I worked for what I had and I definitely deserve the company of the great people I’ve surrounded myself with.

I didn’t need cancer to see that. I didn’t need cancer to make me stronger, though it has. Sometimes, something terrible happens, and we don’t know why. This was one of those things. I hope to be on the other side soon.

Waiting

I’ve reached the end of my patience, just when I need it the most. I’ve been here 27 days.

It’s no fault of the hospital, but I’m just ready to go. I felt patient and Zen as a Buddha when the doctors told me I’d be going home soon on Monday and Tuesday.

Today, I’m ready to climb the walls. Or, more specifically, the wall that I seem to have hit. I’m tired. I feel well enough to be bored, but lack the energy to do most things. TV bores me, while reading requires a little too much mental energy. I yawn frequently, but it hurts my throat. I look like I’m crying, because my eyes water so much from being tired. I can’t believe how exhausted I am without the morphine.

Sometimes I do cry, because I’m just tired of being sick. Everything smells hospital-tinged. Then I feel a pang of guilt for those who have been here longer, for those who suffer. For those who check in and never check out.

I estimate I will be here another five to seven days. It’s not an eternity, even in hospital time.

Tick Tock

My release is soon. According to my doctors, I could get out as soon as this week. Here’s what has to happen:

1. My counts have to be good. So far, so good.

2. I have to be able to eat 1,000 calories per day. Right now, I’m still struggling with broth and pudding. Today, perhaps I try some mashed potatoes. Tomorrow, if it’s rainy, I plan up on curling up with Game of Thrones and a Cranky Monkey smoothie.

3. I have to get rid of my IV medication. This is good, because I’m not on very much medication at all, considering. I’m no longer receiving morphine, but I still have the pain pump, so the morphine’s under my control. The anti-nausea drugs, Acyclovir, vitamins and other goodies I’ll eventually have to take by mouth, much more doable now that my throat is feeling better.

4. I have to drink a liter of water a day. Pre-transplant, this wasn’t a problem, so let’s see if I can get there again, with my sore esophagus.

Fingers crossed. I can’t simply chug some water and eat a bunch of food and check myself out. Hopefully, I feel well enough in the upcoming days to meet my goals and get out of here! After 26 days, I’m ready!

On Blogging

My invitation from The Big C and Me to join the World Blogging Tour last week got me thinking about why I write these blogs. At first, it was a way to process what was happening with my Hodgkin’s lymphoma, and later, once I decided to share that I had cancer in September 2013, it was a way to keep people posted on what was going on. But I’ve also wanted it to be a place where those going through ABVD chemotherapy or a stem cell transplant could read about my experience so they had an idea of what to expect.

I found a few blogs about Hodgkin’s lymphoma and refractory Hodgkin’s lymphoma to be helpful, so I wanted to put my own info out there, although each patient has his or her own experience. Some people can eat all the way through the transplant, some have throat pain (like me), and others have nausea. Some people experience very few side effects, while other people have many. Many people go into remission after ABVD, while some refractory or relapsed cases need additional trials, chemo and radiation.

I never wanted to become a cancer blogger, because I never wanted cancer. Once I started writing, though, it became extremely therapeutic. When I talk about pain or side effects, I hope it doesn’t come across as self-indulgent or woe-is-me. It’s just to let people know what happened and what they might expect. I’m not one to pore over every blog out there either, because at some point, I’d freak myself out.

I suppose my message is: If I can to this, so can you. I have a low tolerance for pain. I’m squeamish. I don’t like doing things I don’t want to do.

My experience, overall, has been a good one, despite the disappointments of having refractory Hodgkin’s lymphoma and the year-plus of treatments.

Here’s a little update on what’s going on with me, more than a week after my transplant.

My eyelashes are gone. They just disappeared one day. In high school, this guy I knew plucked out all his eyelashes one day because he was bored, he told me, as we stood in line for gym attendance. His eventually grew back. I have a few left, and they keep depositing themselves into my eyes.

My eyebrows also are mostly gone. I feel as if I spend more time, money and thought grooming my brows than my hair (back when I had hair). It’s almost a relief. Fine, take a break, brows. You’ve earned it. Come back when you’re rested, and we will resume our struggle with how much real estate on my face you’re allowed. Spoiler alert: Not as much as you seem to think. (I still have a few mustache hairs in place, though. Those can go away forever if they’d like.)

I am nearly sipping. I took about seven sips of tea last night, and it felt momentous until I looked at my nearly full cup. Oh, well. Small steps. The doctors seemed impressed after looking into my mouth, which has been healing, but they also don’t want me to force myself to eat or drink. Taking a few tiny pills today really hurt. Today, more tea; tomorrow, broth.

My throat's enemy: The tiny pill.

My throat’s enemy: The tiny pill.

I had a bit more tea today, but I forgot that I need to focus all my attention on swallowing liquids while my esophagus heals. Otherwise, disaster ensues. Luckily, I didn’t choke too much on my tea.

I’m starting to get hungry again. They really go all out here to try to tempt you to eat, so it’s no fault of the menu. I have in my possession the regular menu, the weekly specials, the children’s menu (with a Thanksgiving Day sandwich) and a purée menu (where everything is puréed, even the lasagna that I plan on ordering when I am well enough). I just need to get rid of this pain.

I am awake for hours at a time. I still nod off a lot—while I’m typing an email or getting my vitals taken. But I can stay awake for awhile without napping again. But on that note … I can tell I’m falling asleep now if I close my eyes for more than a second or two.