cats :: A Pain in the Neck | My experience with Hodgkin's lymphoma (& neuroendocrine tumors)

Three Little Kittens

When I was a little girl, one of my favorite children’s stories was about the three little kittens who lost their mittens. I have always loved cats. My dolls sat languishing in their doll beds while my stuffed animals got all the attention.

Before Instagram, I had to make my own photo layouts of cats when I was about 10. Pictured are Pretty and Perky, my grandpa’s cousin’s cats, and Morton, the beloved black cat who lived next door to me growing up.

We would sometimes visit my grandpa’s cousin in southern Ohio, a widow. I was told she didn’t like children and so I had to be on my best behavior. I spilled milk on her before a wedding and I realized then why she didn’t like children. She had two cats: a ginger tabby named Perky and a white fluffy cat named Pretty. I loved them. I knew deep down that one day I would be a cat lady.

When I realized I would die soon, I worried. What was I going to do about my three cats? My ex had initially said he would take them, but I knew that he would move to the U.K. to be with the Pilates instructor he left me for. And I knew that she already had pets, a dog and some cats, because she mentioned them in the flirty texts she sent to him. (Maybe he replaced me with a woman better suited to him and his extravagant tastes, but I take great satisfaction that his British cats will never be as great as goofy Ziggy Stardust, cool Lux Interior, and sweet Lulu.)

I started this post last year when I was dying, then I was too busy living to finish it. The question of pets comes up in support groups and among the terminally ill. What do we do with the animals we adopted when we expected to outlive them?

Thankfully, someone has agreed to take in my three cats all together. It’s such a relief. Right now, the cats also have a catgodmother who comes and cares for them during my hospitalizations.

My cats have a lot of personality. Everyone who visits has a favorite. Ziggy, a friendly good-looking tabby, needs lots of attention, and turns on the charm for all visitors and is a popular choice. Lux, a black cat with a hearty appetite and a goofy personality, has his own distinct fan club. Lulu, a small somewhat shy tabby, cultivates fiercely dedicated devotees with her sweet and gentle disposition.

Ziggy Stardust

A friend took a photo of Ziggy at his birthday party.

Ziggy is the cat who greets people at the door. He needs to charm everyone, whether you are sleeping on the daybed for a few days or over to fix the printer or the pipes. He is a ham. He poses for pictures. He’s a handsome cat, with big velvet painting eyes and a pink nose, and he knows he’s attractive. Some people say he’s a dandy.

We have a special bond because his sister, Charlotte Sometimes, was very sick with FIP as a kitten before she died. He would try to play with her but she was too weak and my ex would often lock Ziggy in the bathroom when he would try to play too rough with Charlotte or when Ziggy would mess with his record collection for attention. So sometimes I would spend time in the bathroom with him, during his exhile. Ziggy’s also really smart, so he figured out how to open the bathroom door, so if he got bored enough, he would let himself out.

Ziggy was sick at the animal hospital and I went to visit him. A photographer friend took this Madonna and child photo.

After his sister died, he didn’t have anyone to play with and so he would jump out from behind things and puff himself up like a Halloween cat to try to get me to chase him. I would chase him and catch him and then hold him and he would purr. We still play that game when he wants attention. Confused guests asks why he’s puffed himself up, but he’s just trying to play the little game we played. You have to try to pretend you’re going to get him and then hold him. He’s been doing it more and more lately, adding a little jig. His catgodmother calls it his “heed me” dance.

He loves attention so much that he’ll put up with me dressing him up and taking pictures sometimes. He’ll endure an otter hat or being dressed as a cow for attention. He’ll wear his bow tie for special occasions.

Ziggy is uncannily smart. When we were trying to keep him from my ex’s record collection, we got a scat mat, one of those mats that sends a slight shock, and put it in front of the records. In the middle of the night, he found the connector piece didn’t shock and was dragging it to the middle of the room with his mouth, to a place where we would step on it instead. Our eyes met as he moved the scat mat into my path. I didn’t care about the records and admitted defeat, proud that I have such a smart cat. The other day, he tried to figure out the cabinet door so he could get one of his favorite toys.

One day, I caught him on the cat cam trying to dismantle it before he knocked over a lamp. (This makes him smarter than my ex, who left the cat cam on when he called his brother to tell him about the London woman and talk about how he was tired of dealing with cancer.)

He is a sensitive soul and has to be on anti-anxiety medication. Because of his anxiety, he is prone to urinary tract infections and has to have a special diet. Of all the cats, I worry about Ziggy the most, because he lost his sister and he’s going to lose me too. Ziggy is my whole heart. He loves me too, I think. I bought a card with nine cat faces on the front for my boyfriend that said, “I would spend all nine lives with you.” Ziggy chewed the corner of the card. He likes to eat plastic, but it’s as if he was sending a message: I will always be his.

Ziggy’s major flaw is that he eats Apple chargers. Not all chargers, mind you, but Apple brand in particular. I think he has stock in Apple. I have a special case for my charger so I can wrap it up when not using it. He also loves to eat tape and adhesives.

He often sleeps on my neck, like a scarf, purring, his pink nose close to my cheek. I have a painting in my childhood bedroom that looks just like Ziggy. I feel like we were destined for each other.

Lux Interior

Lux was originally a set of ears mostly.

For my 22nd birthday, my boyfriend at the time surprised me by taking me to Cat Welfare in Columbus on our lunch break to pick out a cat. I was still a little bit goth, and after looking at a litter of little black kittens, I picked out a big spooky black cat that my boyfriend thought was ugly. It ran away from me and hid. He had to get back to work, but I needed a cat that very day, and so I took home instead the cat who stuck by my side when he meowed to be let out of his cage: A goofy white cat with tabby spots and tabby tail. One of my friends called him a “Frankenkitty, like someone took a bunch of different cats and sewed them together.” He did look like he was the last cat made at the factory that day and they used the last scraps of fur. I never regretted adopting sweet, goofy, clumsy Maceo.

Now Lux is mainly eyes.

I finally got my black cat a few years ago, at Urban Outfitters. They were picking up the tab for Best Friends animal adoptions, and we were on a search for companions for Ziggy. They hadn’t even put out Lux and his sister, Lulu, yet. They were barely three months old, and when we took one out to look, the other would mewl for its sibling. Lux was mostly a set of ears on skinny kitten legs. He had a tiny white spot on his chest. Both of them have their tails on backwards, so they curl forward. Another cat factory mishap; someone new on the job put a bunch of tails on backwards.

Lulu loves Lux. Ziggy loves Lux. Lux loves everyone. He’s very relaxed, except for when he’s racing around or chasing a spring. He likes to tear apart boxes. He looks at the window and stares at birds and makes clicking noises at them. I can’t tell if he’s impersonating the cats or if he’s telling them that he’s going to eat them.

Lux sincerely believes that no one can see him while he hides behind this curtain.

When he was a kitten, Lux would insert his entire face into your open mouth if he could. Now he is more polite and just inserts his snout. Food is his favorite thing.

Master of disguise. Stealth.

Sometimes I think he would be OK to live on the streets, but one of his favorite activities is to hide behind the sheer curtains. He can see out but he doesn’t think anyone can see in, nor does he realize his feet and tail are clearly visible below the curtain. He jumps out to surprise you and I have to act surprised. I think he’s convinced his sister, Lulu, that you are invisible behind the curtain. One of my friends who is a Lux fan uses a hashtag when he does things like this: #classicLux.

Now that I finally have a black cat, he’s the least goth cat you can imagine. He’s weird, but he’s definitely not spooky. That’s OK. I was also too goofy to be a real goth anyway. He’s the perfect black cat for me.

Lulu

Lulu is little camera-shy and a bit shy in person as well. Ever-cautious, she hides for a little before emerging, unlike the boys begging visitors for attention the minute they arrive. She establishes deep connections. “I love sweet and gentle little Lulu the best,” declared one of my best friends.

She’s a sweet and gentle soul.

Lulu has special meows and language for her favorites, eating on a shelf for her cat godmother. She follows my boyfriend around and meows at him for kibble.

Like my old cat Maceo, she answers to her name, to “Lulu” or “Lulululululu.” I didn’t know what to name her and when my ex suggested Lulu, I had my doubts. But I called her name and she immediately answered, so she picked her name.

She prefers kibble to wet food. Every day she buries her wet food by pawing the hardwood floor around her dish. Every day, the other cats find it.

Sometimes she watches TV.

Even though she’s so shy and timid at times, it seems like she craves adventure and travel. She often tries to sneak into her catgodmother’s bag and see the world.

Lulu suns her belly. Her front paw pads are all black except for one pink toe. Like her brother, Lux, she has a white spot on her chest, as well as an orange patch. She has a black ring around her neck that makes it look as if she’s wearing a necklace.

The person who is going to take care of them when I’m gone came to visit a few weekends ago. It was bittersweet. I know she’ll take good care of them. I told the cats to be good and impress our special guest. Ziggy was sweet and charming. Lux was soft and friendly. Lulu cuddled and even brought out a toy mouse to show off what a fierce huntress she could be. I’m so proud of my little cat family. I will have to say goodbye to them soon, and it will be one of the hardest things. Until then, I treasure my time with three of the very best cats.

Working With Cats

I’m finally, finally starting to feel closer to normal, a little more than six weeks after my surgery. (More on that soon.) I’m returning to the office soon, after spending the last several weeks working at home. As I adjust to the idea of getting dressed in the mornings and interacting with people again, I have been thinking about how office life will differ from working at home with two kittens.

Con: I will have to wear real clothes with zippers and buttons.
Pro: I can wear clothes with ties and strings without being jumped on and having someone try to bat at them.

Con: My co-workers will report me to HR if I rub their bellies.

Con: People at work will frown upon afternoon naps.

Pro: My co-workers will be less fascinated by my lunches.

Con: I won’t be able to do this with my pens.

Pro: My co-workers are less likely to run across my keyboard and erase my work.

Con: When I tell people something surprising at work, they won’t look like this.

Pro: No one is likely to chew through my computer’s power cord and then look at me like this.

Pro: This won’t happen while I’m working.
Con: This won’t happen while I’m working.

Goodbye, Little Buddy

Yesterday, we said goodbye to Maceo, a gentleman among cats and a sweet, good-natured, lovable, all-around good guy. At 17, he was considered pretty old for a cat, but, until this last week, he was in fairly good health and remained a kitten at heart.

Maceo was very patient with all my picture-taking. Here he is with me and his portrait in December 2012.

I can’t believe he’s gone. He lived with me for 16 years. Aside from my mom, who I lived with for almost 18 years before going to college, I’ve never lived with anybody that long. When I was looking for photos of him to post, I didn’t think I had one of him with his painted portrait and I almost went to look for him to take a picture before I remembered that he wasn’t going to come to me when I called his name.

Maceo leaves behind a big gap in our lives. Literally. He was a big kitty. Whenever I would take him to the vet, people peering into his carrier would exclaim, “Oh, what a big cat!” as if I were transporting a mountain lion. But the large gap that he leaves is because, like his companion, Akasha, who left us several months ago, he had a lot of personality.

Maceo had a peaceful nature. When I lived in a house in Ohio, I would sometimes let him out in the backyard because he loved to sit among the plants, blissfully sniffing the flowers and sunning himself. He never bothered the birds or the neighbors’ five-pound Yorkie, who was afraid of cats. The dog and Maceo achieved a pact, sniffing each other through the fence in a silent agreement to not bother each other. My neighbor said it was the closest his Yorkie had ever been to a cat. (Akasha, on the other hand, couldn’t be outside much because she was a cat who had to hunt everything, including the tiny dog; I once caught her lurking among the plants in my garden, ready to attack as the Yorkie blithely ran around his yard, unaware of the nearby danger.)

Like Akasha, Maceo served as an artist muse. Here he is last month with a drawing of his likeness.

Maceo was a gentle soul who never wanted any trouble. Occasionally, a neighborhood cat would enter the Ohio yard, and Maceo would retreat. Once, he walked out and was greeted by the hiss of a cat outside. Maceo simply backed right up into the house, as if he had been rewound.

Aside from a phase in kittenhood when he loved to bite socks with feet in them, I never had to warn visitors of any behavior. Well, they had to watch their snacks, but that’s about it. At parties or gatherings with food, as guests filled up and eventually drifted away from the snack area, the cats would plot a way to get food, each displaying different tactics. Akasha would use the sneak attack, quietly edging her way to the unattended bowls and plates, whereas Maceo would tend to lunge for the bounty, eating as much as he could before being shooed away.

Though Maceo would bat around the occasional mouse, he preferred stationary prey—the fallen bit of cheese, an unguarded hamburger, a chip that had strayed from the bowl and sat out alone and vulnerable. Once a big sliver of potato chip fell onto a nearby end table and I saw his white paw emerge from underneath the table and quickly grab it, followed by a crunch.

Maceo was a handsome kitty with a lot of personality.

For a cat, Maceo was notoriously clumsy and lacked feline grace. He always fell off things, and he never quite understood the burying of things in the litterbox, just reflexively pawing in the general area without really covering much. Handsome Maceo was interesting-looking as well. When I first got him, a friend described him as a “Frankenkitty, like someone took a whole bunch of other cats and sewed them together.” He was a mix of a tabby and a white cat—a tabby tail with tabby ears and spots of tabby coloring; people often remarked in his striped spots. I always felt as if he were the last creature made at the animal factory that day, assembled with stray bits of cat fur and a cat body, with perhaps the soul of a dog, and all the leftover good nature and sweetness they had to use up before they mixed a fresh batch to put in the creatures scheduled to be made the following day.

Maceo was my first cat, the high standard to which I hold other cats. When we recently were in the market for cats, I had a hard time looking at cats that didn’t grab my attention the way he first did. The day before my 22nd birthday, my boyfriend at the time picked me up from work during lunch break and took me to Cat Welfare, a local cat shelter in Columbus, to surprise me with a cat. As we walked through the shelter and by the cages, one cat, a white cat with tabby markings and a distinct meow, meowed so insistently that I decided to take him out and see him. He purred and got fur all over my fleece pants. I put him back, though, because I had my heart set on getting a black cat. After looking at some black kittens, I decided on a big black cat that my boyfriend said was ugly. But the cat ran away from me and hid. My boyfriend had to get back to work and suggested we come back another time, but I wanted a cat that day. I thought back to the sweet cat who had stayed by my side and was still meowing in his cage and I impulsively said I would take him instead.

Maceo was a sweetheart.

Looking back, it makes me really sad that I came so close to not having Maceo in my life. He was about a year old, declawed and neutered when I got him, so he had clearly been someone’s pet. I think he must have wandered away from his original home and gotten lost. He is named for the Jane’s Addiction song “My Cat’s Name is Maceo,” on which Maceo Parker plays. The lyrics seemed fitting “My cat’s name is Maceo/he’s a little man in a cat’s body” and “We went down/down to the pound/ and that’s where we saw Maceo/Cat catcher said to me, ‘Go ahead and pick one out’/and Maceo said ‘Let meow-t.’”

Maceo with Charlotte, in his favorite chair with his favorite blanket.

When we got the new kittens, it felt right. Charlotte (named for the Cure’s “Charlotte Sometimes”) was trying to steal a toy from a neighboring cat’s cage, while Ziggy (named for “Ziggy Stardust”) chilled out in his litterbox. I had pictured the three cats having more time together, and I’m sorry that the kittens won’t be able to learn from Maceo and know what a magnificent cat he was.

I wanted Maceo to be a fine example to Ziggy.

Maceo’s decline was very swift. He started throwing up and not eating last Friday night, and ended up at two vet appointments and three emergency room visits within the past week. They tried fluids, steroids, pain medication, anti-nausea drugs, appetite stimulants and antibiotics, expecting them to work each time, but nothing seemed to help. We were really optimistic last Sunday when they said we could take him home. By yesterday morning, he was so sick, we knew it was the end. It was so terrible to see such a vibrant cat so sick and visibly miserable and in pain. I am glad he didn’t suffer for very long and was able to enjoy his life without much illness.

I miss him. He would answer to his name and would come when you called him, even if meant getting up from a warm, sunny spot on the bed or when he was curled up in his favorite chair. It’s strange to not have him greet me, without fail, at the door when I get home. The apartment’s a little quieter without his little stomp-walk across the floor, though the kittens are zooming around at full speed. They have big shoes to fill.

Goodbye, sweet Maceo. I hope wherever you are, you are united with your old pals Tabby and Akasha and it is a place filled with all your favorite things—cardboard boxes, sunshine to bask in, plants, catnip, smoked meat sandwiches, ice cream and someone to stroke your soft fur. I miss you, but I can’t think of you without so much joy. I love you, little buddy.

Maceo as a Game of Thrones dragon.

Maceo and Akasha as kittens.

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.

Second Round of Augmented ICE Delayed

I was supposed to be in the hospital right now, receiving my second round of augmented ICE. Instead, I am lounging in bed and catching up on work—and, of course, this blog. I have mixed feelings about this—obviously, I’d rather not be in the hospital, but it’s just a three-day respite from the inevitable. Instead, I’m going in tomorrow, just in time for the snowstorm. (One of the many snowstorms of this winter.)

I have mixed feelings about the weather too—on one hand, it makes going to the hospital and doctors’ appointments, of which there will be many, less pleasant, but on the other hand, I have to be a hermit through May, and hermitlike through mid July, when the weather is beautiful. (I expect the winter to be done by then, at least.) This is when I wished I’d skipped the Brentuximab and gotten all this unpleasantness over with in the winter. Ah, well.

Friday, I packed up my hospital suitcase full of loungewear and my blanket and headed to my doctor’s appointment before the scheduled leukapheresis catheter placement. When the doctors saw the arm with the two clots, however, they decided to delay catheter placement and my hospital stay. My arm at that point looked better than it did on Thursday, when it swelled to giant proportions. I was worried it would burst open like a piñata filled with blood, but I realized this is probably not possible.

After a night of a heating pad and menthol pain patches, my arm was still red and hot to the touch. And it hurts. Sometimes, it feels like a tiny flame is in my arm. I rated the pain a five or six, but my boyfriend told the doctor it’s an eight. He corrects me a lot at the doctor, and I always wonder if they write down what I’ve said or his opinions. I think I have to agree with him in order for them to take his into account. An eight is pretty serious though. I maintain this is a six.

In case my arm is infected, I’m on antibiotics, and I went for another ultrasound. Apparently, the clots are the same size. They’re just inexplicably more painful and annoying. So I got some more Lovenox to inject daily to try to clear them up.

I start chemo on Monday and then I have my catheter placement on Tuesday. In the meantime, they might use a PICC line for the chemo, since my veins have been less than cooperative.

On Friday, I did meet with the transplant doctor, who gave me an idea of what’s in store in the coming months. Spoiler alert: Not much in the way of fun.

The saddest news came when she asked me if I have pets. When she found out, I have two cats, she had a list of don’ts. I can’t change the litter, but that’s my boyfriend’s job anyway. Also, she said I have to keep them away from my face until mid-July. What? How am I supposed to resist burying my face in their fuzzy bellies?

Also, one of the cats is extremely proactive about touching our faces. Just the other night, she was curled up by my boyfriend’s face, rubbing her wet nose against his cheek while he tried to sleep. I wake up with her paw on my shoulder or her face buried in my neck, or sometimes I wake up because she’s pressing her nose against mine.

The doctor is very knowledgeable about stem cell transplants and medicine, for which I am grateful, but I suspect she knows very little about cats when she suggested we break the cat of her habits. There’s no teaching a cat anything. It’s going to be a long, sad three months.

I didn’t cry when I pulled my hair out or applied duct tape to my head. I didn’t cry when I heard about my upcoming “hell week.” But I did cry about this. Sometimes, I’ll just look at the cats and tear up. It’s not even like I won’t be able to pet them. I guess it’s just a symbol of how things are going to change in the coming months. Also, I love kitty-cats.

I have to make sure all their shots are up-to-date, so luckily we just took them to the vet. They are senior cats, but in far better shape than I am right now. In fact, the female cat is in the shape of a cat one-third her age. I wish she could understand the vet, because she is vain and would enjoy this news.

Aside from the cats, I’ll have to avoid alcohol, something I had assumed was a given. Once your fast-growing cells are poisoned and you have to take anti-nausea drugs, drinking isn’t something you feel like doing. Also, after the last ICE, the nurse advised drinking at least two liters of water a day so the drugs don’t irritate the bladder and cause bleeding. So I stayed extremely hydrated, although I’d have a little coffee with milk during the second week. Of course, I’d love to hit happy hour instead of giving myself blood thinner injections. I think I could do an excellent job of thinning my blood on my own. Alas.

I’m also supposed to walk to help with recovery. Vigorous exercise is out—I haven’t done my workout DVDs since the first round of ICE and I managed to do yoga only four times since, after being thwarted by my fever, hospital stay and the arm I can’t move because of the clots. The thing is, I don’t want to walk outside when it’s cold, and there’s no sign of spring in sight. I’ve thought of getting an elliptical, but I have a small Brooklyn apartment. I do have a Leslie Sansone walking DVD that I got when I worked at a women’s magazine and edited the fitness section of the blog. The magazine shut down before I had a chance to watch it, and I’m intrigued. It could be a nice indoor walking solution that doesn’t take up much space.

I can do gentle yoga, but I’ll have that chest catheter so I’m wary of stretching. The doctor advises stretching a little bit once it’s in, but in addition to the heebie-jeebies, I can’t move my right arm much because the clots hurt.

At some point, I’m also going to get a blood transfusion.

I got a thick binder full of information from the doctor all about the transplant with fun topics like hair loss, catheter care and giving Neupogen injections twice a day. I haven’t even scratched the surface. For those asking what’s in store and my schedule, here’s an idea:

March 3–5: Second round of augmented ICE, catheter placement. I am not looking forward to having tubes sticking out of my chest. This gives me the heebie-jeebies. There will be two for the stem cell collection—one to take my blood out and the other to put it back in once the stem cells are removed and my blood spins around in a machine.

March 7–16: Neopogen injections, a catheter dressing change. We’ll do the former, but I’m glad we don’t have to do the latter. The shots to increase stem cells might cause bone pain, I’m told. They’re going to give me pain medication, but I hate taking pain medication. I don’t even like to take aspirin. I do hate pain, though, so we’ll see.

March 17–19: Stem cell collection. This involves sitting around for four hours, while your blood is taken out and put back in. It doesn’t sound so bad. During these days, I also have a flurry of tests and appointments, including an echocardiogram and a pulmonary function test, as well as an appointment with a social worker to mentally prepare me for the transplant. The best part of this process is that I have to eat a high-dairy diet these days. Bring on the milkshakes and cheese. (Greens also have a lot of calcium, so I’ll be sure to eat those as well.)

Stem cell collection might take longer than three days. They need 5 million. The record to beat is 32 million, but the doctor said that person had a lot of bone pain, so I’m OK if it takes longer. I’d like it to take only two to three days, if possible. I hope my bone marrow cooperates.

March 24: PET scan. I need a clear one to go on to the transplant, so I hope I pass! It would be nice to finally get a clear PET scan, something I’ve been hoping for since October. And I think I start outpatient radiation this week.

April: If everything goes well, five days of inpatient radiation and three weeks in the hospital for the transplant. The radiation is supposed to have unpleasant side effects, so I’m just in the hospital so they can keep an eye on me. Then the first week, when they do the chemo, is supposed to be OK. They keep referring to the second week as the bad one. Someone called it “hell week.” I’m scheduled to speak with a volunteer who has been through this to answer any questions. Also, someone left a comment on my last blog about a friend of hers who did a stem cell transplant for refractory Hodgkin’s lymphoma and is doing well. It’s always nice to hear tales from the other side.

In the third week, I start a long recovery—about three months of rest and isolation from crowds and six months until I’m 100 percent. I’m a little disappointed to hear that the first month of recovery is so intense and that I’ll need 24-hour supervision. Of course, I didn’t expect to emerge from the hospital feeling great. But I’ll have the immune system of a newborn.

So that’s what’s in store! The next steps start tomorrow, and as much as I’m wary of what’s in store for the next few months, I’m also eager to move towards the end.

A Year After My Hodgkin’s Lymphoma Diagnosis

A year ago yesterday, I found out I had Hodgkin’s lymphoma. That day, if you would have told me I’d be putting duct tape all over my head a year later, I may not have believed you.

This past year has seen me do a lot of things I didn’t think I would or could do. I’ve been through six months of chemo. I’ve given myself blood thinner injections. Until this past month, I’d never been in the hospital overnight. I have nine radiation tattoos. I’ve shaved my head three times.

That last part brings me to the duct tape. On Saturday and Sunday, I noticed all my hair was falling out at once. I could just reach up and give it a slight pull, and it would easily come out.

I was thinking of just pulling it all out, and I started to do so Sunday morning, but got bored, so we decided to shave the rest off. I’m not sure who reads this, but if all your hair starts falling out after augmented ICE, just pull it out, no matter how long it takes. When I shaved it, I had stubble left. But it hurt. When I put my head on a pillow or touched my head, it felt like tiny needles in my scalp. The places where I’d pulled it out felt nice and smooth.

On Monday, I was desperate. I asked my boyfriend if we had duct tape. At first, he said we didn’t and he added that he thought pulling out my remaining hair with duct tape was a bad idea. He argued that you didn’t know what was on the sticky part of the tape. But since I’m regularly being injected with chemicals that kill all my rapidly-growing cells (including my hair and those is my stomach lining—and hopefully the cancer), the toxicity of duct tape is the least of my worries.

“We do have duct tape, but you’re not using it on your head,” he finally admitted. Killjoy.

I spent lots of time putting masking tape on my head.

I tried packing tape, but that pulled out only part of my hair. And then masking tape, which worked a little better. If you’ve ever wondered what it’s like to apply masking tape to your whole head and pull it off, it’s as tedious as it sounds. I would never try it, obviously, when your hair wants to be attached to your head. But I just needed to get these remaining hairs. I was obsessed.

After another night of prickly sleep, I begged my boyfriend to look for the duct tape. He really couldn’t find it this time. (Or so he claims.) And then he “forgot” to pick up some at the store. I applied more masking tape to my scalp.

Then, yesterday, I noticed a painful bump on my arm, near where one of the chemo IVs had been. I recognized this as signs of a superficial blood clot, which I’d had on my other arm during the ABVD chemo. I called the doctor and had to go in for an ultrasound and rescheduled a work conference call.

The results were two superficial clots — not serious (but painful) clots in my right arm. Since I am having a leukapheresis catheter put in on Friday, I can’t take blood thinners. (On a good note, this stays in for the remainder of treatment and my arm veins get a nice break. Overall, though, I’m really grossed out by having tubes sticking out of my chest for a few months.)

The doctors told me to apply warm compresses to my arms. I forgot to pick some up, so I’ve been thinking about applying the cats after they’re done sunning themselves or after the big white cat is done absorbing the heat from the space heater.

What I did pick up on my way to the ultrasound, however, was duct tape. (And a Snickers egg. Snickers are my favorite candy bar, but they lose something in egg form. I think the carmel, nougat, nut and chocolate ratio is compromised.)

Free at last!

Upon returning home, I triumphantly applied duct tape to my head (and ate half of my Snickers egg). And — just as I thought — it removed my hair. I am free of stubble and smooth-domed. I’m pretty sure my hair won’t grow back until May or June, so this will be my look for awhile. And, unlike last time, nothing is left of my hair.

During this time of baldness, I’m always kind of at a loss of what to do in the shower. The majority of the time is spent washing my hair and shaving. I could take up singing my bald theme song, but I don’t have a very good voice. I’ll probably just exfoliate.

Despite his reluctance to assist me in applying duct tape to my head, my boyfriend assures me that I’m not funny looking. But I had been reluctant to wear one of my usual sleep T-shirts, and I couldn’t pinpoint why. It has the logo of Cleveland goth band Lestat, with a depiction of Nosferatu. I inherited this T-shirt in high school from a friend’s older sister. Today, when I looked in the mirror while brushing my teeth, I realized that there were two bald people with prominent ears displayed in the reflection. After I emerged from the bathroom, my boyfriend looked at my shirt and then at me and said, “Hey, you kind of look like…”

That guy on my T-shirt looks familiar…

“I know,” I said. I’d hoped if I ever looked like a vampire, it would be one of those sexy, preternaturally good-looking Anne Rice characters. I suppose this is what I get for those years of being goth, emulating that vampire look: Nosferatu. Be careful — or very specific — about what you wish for.

Speaking of vampires and blood, my blood pressure’s been very low. I’m not sure why. If I had to venture a non-medical guess, I’d say it’s because I’ve been pretty calm and haven’t been in public much. My blood pressure’s usually a little on the low side, but I wonder if my Frank Costanza-like short fuse raises my blood pressure and keeps it normal. (Serenity now!) I’m not sure what I should to do raise it, other than stew about topics that upset me, like flip flops on the train, Doritos Tacos Locos or that new Kevin Costner movie that looks so bad it makes me angry that Hollywood continually expects us to watch some of the terrible films they keep making.

Aww…

In the meantime, I haven’t gotten around to applying a cat to my arm. But this evening, my arm clots really hurt. As I whimpered and cried as I tried to extend my arm, one of the cats came over and put her paw over my hand and licked my knuckles. (Aw.)

To his credit, the other cat is not without his own sweet gestures. A few weeks ago, I felt a little overwhelmed by everything and just put my head down, face-first on the bed. I was about to cry when I felt a sandpaper tongue on my head and a paw patting my head. I suppose it’s possible I had crumbs in my then-short hair, but I’d like to think he was comforting me. He may never understand how to get treats out of his toys and he may lack feline grace and fall off the couch a lot, but he’s a sweet cat.

Obviously, this is not where I’d like to be a year from my initial diagnosis. I wish the six months of ABVD had cleared up the cancer. I’d rather not have refractory Hodgkin’s lymphoma, The hardest part of treatment still lies ahead, in these coming months. Yet absolute ridiculousness of covering my head with duct tape and looking like Nosferatu is at least keeping me from taking myself too seriously on what could have been a very sad anniversary.

All or Nothing

I realized when the nurse practitioner told me I needed to do the ICE high-dose chemotherapy before moving on to the stem cell transplant that it was what I’d been expecting. My PET scan looked better, but it’s not 100 percent clear. The stubborn lymphoma spots in my chest and belly have decreased in size, and they don’t show up as brightly on the scan. So that’s good. But I still have to do the ICE. Close, but no cigar, Brentuximab.

Part of the reason that the doctors were doing this trial was to find a less toxic alternative to ICE. And ICE doesn’t sound pleasant. I allowed myself one blog read of someone who has gone through it, just to prepare myself without scaring myself.

On Monday, I pack up for three days and go to the hospital for round one of augmented ICE. Then I’m home for 21 days, while going in for blood tests and such, before going back for three more days of ICE. Then it’s on to the stem cell collection, then 10 days of radiation and the 21-day stay in the hospital for the transplant.

Everything’s going to change as of Monday, even if most of it is temporary. (After the stem cell transplant, I should be back to normal in about six months with a few long-term side effects.)

I feel as if I shouldn’t be writing this. Lately, no matter what I’m doing, I feel as if I should be doing something else. I have a limited time to do everything, a looming deadline that I can’t push back. I have work I need to finish, so I feel as if I need to get as much done as possible before I go into the hospital.

I won’t be able to work out for months. I’ve finally started doing yoga at home and a 20-minute Jillian Michaels workout. (I’m up to level two on the 30-Day Shred!) After six months of working out sporadically and about two months of barely working out at all, I’m finally getting stronger. I’ve even returned to a few kickboxing and TRX classes here and there.

But, of course, I’m going to have to take a long break again. So I also feel as if I should be working out more. Sometimes, I’ll sneak in some yoga, but I’ve usually been doing just the 20 minutes—and even that’s been hard to work in. Where does my time go?

I also feel as if I should be out having fun, though all this snow and cold makes me want to stay in and hibernate. And when I am out, what constitutes enough fun when the next few months are going to be no fun at all? There isn’t enough fun to be had. Am I failing at fun?

I picture this elusive fun as something like Mötley Crüe’s “Girls, Girls, Girls” video (though I’m not particularly comfortable with strippers or motorcycles) and Bananarama’s “Cruel Summer” (filmed not far from where I live, in much warmer weather, years ago). I should be carelessly frolicking or maybe doing something debauched right now. Instead I am inside, blogging, after working all day and doing my 20-minute workout.

There’s a perverse part of me that wants to see what I can get away with before my hospital stays. Sometimes, it’s all-or-nothing with me. When the radiology oncologist told me that I’d have to eat heart-healthy for the rest of my life, I wondered, “Should I just eat a bunch of double bacon cheeseburgers until then?”

I should be dining like a medieval king, eating giant turkey legs, swilling mead and making jesters entertain me. Tonight, I have veggie chili, tea and the cats—oh, and Homeland, which I’m catching up on. I should be living like Marie Antoinette in that Sofia Coppola movie, before the beheading. Mile End deli is having a poutine week, so I might indulge in that at some point.

I feel all this pressure to work, workout and have fun before the unknown fatigue and nausea of the next few months. Aside from that, another main factor, according to the doctors and nurses, is boredom. Apparently, I’m better than I thought at hiding my lazy streak. Everyone seems to be underestimating how good I can be at doing nothing.

I’m glad that all the hard work I’ve put into appearing hard-working is working. People assume that doing nothing will bother me. I know that, since I say I’m stressed out about having fun, it doesn’t seem like I’m capable of relaxing, but that really is my natural state.

I achieve a delicate balance of hard work and utter laziness. A few weeks ago, I worked from 9 am to midnight, with the exception of a radiology appointment. (Even at the appointment, before seeing the doctor, I had my laptop out, working on a last-minute assignment.) And I did my quick 20-minute DVD, which is essentially working out really hard so you don’t have to work out as long. Later that evening, my idea of good planning was wearing a navy T-shirt because we were having pasta, and I thought there was a good chance I’d drop some on myself. So on one hand, I got a lot done, but on the other, I’m too lazy to properly feed myself.

Last week I achieved my main sloth goal, which was to not leave the apartment during the deep freeze. I also managed to see some friends who I haven’t seen during my hibernation. One of them lives just a few blocks from me and when I finally emerged from near hermitage to go to chemo on Friday, she lured me over with cookies.

That’s about as crazy as it gets around here, before my months of being somewhat of a shut-in begins. I’ll be enjoying time with my boyfriend, friends and cats (sadly banned from hospital visits) before my time of rest and recovery. However, two friends gave me a cat totem to take with me in lieu of my cats, and my boyfriend’s mom made me a blanket with a cat pattern, so I can be properly identified as a cat lady in the hospital.

This week, however, you will probably not see me cruise by on a motorcycle or dancing on rooftops or throwing bananas at cops—at least not if this snow prediction is accurate. I’ll have to save that for after the transplant.

Last Chemo! Why Am I Not Celebrating?

My last day of chemo, treatment 12 of 12, the last of the six cycles, was Friday. Why am I not setting off fireworks, organizing a parade and popping the champagne?

Well, even sparklers scare me, I don’t have time for a parade, and I can’t drink. It’s a bittersweet (and still slightly scary) time. My boyfriend says I always see the glass as half-empty. But I don’t think I’m being pessimistic. I’m being cautious. I don’t want to announce the end of chemo prematurely.

Because there’s a chance, even after these past six months of ABVD, that the cancer isn’t gone. I’m not saying that I know that for sure. I just know it’s a possibility, one that weighs heavily on my mind.

The last PET scan, after eight treatments, showed a reduction in the two remaining tumors, but they’re not gone. Ideally, the oncologists like to see the cancer gone at that point.

My new PET scan is slated for Oct. 10, and then I see the doctor about a week later. So I wait. I try not to think about the pains in my side and my chest. (Is it the tumors shrinking? Are they still there?)

I have plenty to busy myself with in the meantime. On Saturday, my community garden had a Bluegrass, Blues, Bake, Bulb Bonanza. (There’s still time to buy bulbs through Oct. 30 to support the garden!) And then I spent the evening making costumes for my cats for our Breaking Bad finale party. I have work, which I’m thankful for, though I’m still getting used to freelancing. It doesn’t feel real.

I also have something else to celebrate today—the last of the blood thinners! It wasn’t so bad, though the injections sting a bit, no matter how slowly you do them. It’s slightly less painful than listening to that LMFAO song about shots. What I noticed the most after the shots those first few days was that my butt felt funny. That’s right. My butt. It’s where I feel my squeamishness. It’s also the center of my fear. If I’m in a high place and have a fear of falling, or if something gives me the heebie-jeebies, the area around my tailbone feels funny.

After the first few days, the heebie-jeebies died down, but then I noticed the stinging. Also, making someone pinch her abdomen after she hasn’t been able to work out for months is a little cruel, but oh, well. I have more abdomen to poke.

The blood thinners appear to be clearing the clots, although my brave right arm, which bore the brunt of chemo since July, finally gave out on Friday. This time, I got an IV in the hand—but not the vein used last time, because it was a little achey. The IV was in fine, but for some reason, when any medications went in, I had an uncomfortable feeling in the middle of my arm. During the administering of the anti-nausea medication, raised red hives appeared on my arm, and it started to swell a bit.

The nurse put some cortisone on my arm, and she called in the doctor. They agreed it was an allergic reaction, though I’ve had that medication before. I think my right arm just had it with chemo. I feel as if they were protest hives.

The nurse administered the doxorubicin, bleomycin and vinblastine through that arm, but ouch! It wasn’t a searing pain, but a few times, I felt that feeling in your head when you have a lot of pain, like you might pass out. Maybe it was because my arm was irritated and swollen. I know I’ve been extremely lucky pain-wise until now, so I won’t complain. (Incidentally, I just recently found out that vinblastine is made from the Madagascar periwinkle. Who knew that such a pretty flower could be such a strong drug?)

When it came to the dacarbazine, the one that does kind of hurt, not to mention the most caustic of the medications, the nurse, the doctor and I all decided maybe we should try the left arm. The nurse found probably the last good vein in my left arm. I couldn’t even see it.

The next day, my hand was black and blue. The swelling went down after a day or two, though I still have some raised red marks. My entire right arm feels like it’s bruised. Sometimes it’s a shooting pain in my hand and arm, but more often, it’s a gnawing pain. I actually want to chew on my arm, like a wounded animal. It feels as if I could gnaw the pain out somehow. It’s really not so bad in the grand scheme of things.

This is temporary. Even the cancer, if it lingers, is temporary. At the very least, I get a break from chemo for a while. Once the scan results are back, the next steps are determined. I’m hoping that nothing is needed and I’m cancer-free forever. If it still looks as if there’s some left, there’s the watch-and-wait option, which I’m not a fan of. I want it gone! Or there’s the biopsy route.

I feel like I can’t start getting back to my “normal” life until I know what’s in store. I don’t want to make plans and then have them taken away.

Yet I also find this limbo, this uncertainty, comforting, because if it’s bad news, then I don’t know yet. So I wait and try to be cautiously optimistic.

Tired

I just took a nap for almost three hours. One minute, I was at the grocery store having a discussion about when mangoes are ripe and enthusiastically lobbying for the purchase of a baby watermelon, and the next minute, I was bone tired.

I knew this would happen sometimes. I napped yesterday as well. Chemo makes you tired. Mostly, I’m tired of having cancer.

I try to stay upbeat, but every now and then, I slip headlong into self-pity and a litany of complaints. I’m tired of looking for jobs. I’m tired of hustling for freelance work. My big toenails looks like this and feel like they’re about to fall off. Random stuff hurts. I can’t stay in the sun for very long before getting burnt, even with sunscreen. My fingers are numb.

I miss eating the random samples at the grocery store that everyone may or may not have sneezed upon. One of the worst parts about my compromised immune system is curbing my desire to eat food of questionable origins. And food that falls on the floor is no longer viable.

I used to invoke the five-second rule a lot. In fact, years ago, I found myself explaining the five-second rule to a member of the maintenance crew at the building where I used to work. He had witnessed me drop a French fry on the floor, then pick it up and put it in my mouth. As I rose from picking up my fallen fry, my eyes met the horrified gaze of the maintenance man. The fact that it was not even my fry, but that of an editor who I didn’t think would miss one, probably added to his confusion.

When I finished chewing (I have some manners), I explained, “Five-second rule.” I was met with a blank stare. He had never heard of it, so I had to explain how, if you eat something within five seconds of it falling on the floor, it doesn’t count. The flawed logic is that germs don’t have time to climb aboard whatever you’ve dropped. Mostly, however, the small time frame usually ensures that someone hasn’t seen you commit this questionable social behavior, so it’s like it never happened.

A few months later, when I found an article clipped from the newspaper about the 5-second rule atop my work inbox, I knew immediately who it was from and smiled. It stayed up on my cubicle bulletin board for a long time.

So you can imagine how it pains me to look at fallen comestibles, and have to throw them away.

The exception was last night, when I reached for my phone and heard something fall off my nightstand. I heard many tiny things rolling around. This was after yesterday’s nap, so I was a little groggy. I looked over the edge of the bed to see my Docusate “dolls” rolling around my (thankfully clean) bedroom floor.

The alarming part was that the cat was not only batting around the laxative/stool softeners, she was trying to eat them. And was soon joined by the other cat.

Docusate pills smell kind of like feet and fish. The cats pounced upon them like they were treats I’d neglected to share with them, impersonating Hungry Hungry Hippos.

Thankfully, the pills were too mobile and too big for the cats to easily eat, despite their best efforts. One cat just sat on them like he was going to hatch them later, hiding them under his ample belly.

I can laugh about this now, because no laxatives were ingested by the cats after all. So there it is. A bright side. There always is, even on bad days, when I am sleepily snatching laxatives from the maws of cats. Even when it’s not a full victory, and I wonder: Would I rather lose my nails than my hair?

So chemo wiped me out this weekend. I still managed to write and apply for some jobs. I had brunch with some friends today and saw some art before slipping into afternoon exhaustion. A friend unexpectedly came into town for a bit. My cats aren’t pooping uncontrollably. Things are still good, even when I’m too tired to see clearly.

Save Ferris

Remember that band during the regrettable third-wave ska revival of the late ’90s? Well, this post isn’t about them, though I hope we can all agree that pop-ska period was a terrible time for music. I’m referring to Ferris Bueller’s Day Off. I think my body is messing with me.

As I mentioned before, it’s not uncommon for my veins to feel a little sore the day after chemotherapy. I had chemo in my right arm yesterday. So why does my left forearm hurt? Sympathy pain? Is my arm faking it like the beloved ’80s film icon, Ferris Bueller? Again, with the random Operation-type pains. Someone is having trouble removing the funny bone.

The only thing I can think of is that when I arrived home from chemo yesterday, in my Benadryl fog, I laid down for my post-chemo nap, and my cat put her paw on my right hand, where I’d had the IV. Does she have some sort of healing touch? Should I apply a cat on both arms next time? My left knee also aches, but I have only two cats.

Also, I have another new side effect. My toenails are kind of falling off. The corners of my big toes turned black and blue, then parts of the nail bed turned funny colors and now they hurt. The doctor I saw this week said that sometimes that just happens. He explained that nails in general get chemo spots or rings in them, like a tree. (Or my hair.) And sometimes they fall off.

It’s not a very big deal, though, because I hate feet. Not in function, mind you, but I just don’t like looking at feet. You’ll never see my feet on display in sandals or flip flops, which I can’t walk in. Some people think I have webbed toes or a sixth toe or unsightly feet, but they were, until recently, completely fine. Since almost all my shoes are closed-toe, no one, except for people reading this, will know about my big toe nails. But it’s weird to have toenail beds that hurt.

Mostly, I feel it’s just rude of my nails to try to leave me like this. In a time of body crisis. First, some of my hair goes. Et tu, nails?

As for my fingernails, they’re so short, I don’t know what’s going on with them. I bite them. I have since I was 4. I remember the exact moment I started biting my nails. I was playing in my yard, and I noticed that the skin under the nails separated a bit and I’ve been biting my nails ever since, for 31 years.

I thought I would stop during chemo, because I’m supposed to avoid germs, and what’s more disgusting that putting your fingers in your mouth all the time? Not much. But it’s my one remaining vice.

I can’t drink. Well, I do a little here and there. But if there’s any time when you might need a stiff drink, it’s while you’re dealing with cancer, and it’s not allowed, sadly. Plus, if you type in “ABVD” and “alcohol,” most message boards will tell you to use good judgment. Isn’t that the first thing that goes out the window when you have a drink or two? (Is that just me?) Plus, whenever I do have a drink, I’m convinced my liver starts hurting. Again, probably just my body up to its cruel tricks.

I gave up smoking years ago, though I have to confess: When I got my cancer diagnosis, I irrationally wanted a cigarette. Just kind of as a way to say, “Oh, yeah? Cancer? Well, take this!”

Of course, having cancer and visiting a cancer hospital will scare the desire to smoke out of you. It’s not like one of those Beyond Scared Straight shows on A&E, where they scare at-risk kids with visits to prison. I know a lot of anti-smoking ads focus on the gruesome aspects of lung cancer and emphysema. But what gets to you at the hospital is the tedium. The insurance red tape, the bills, the fact that one expensive habit leads to an expensive fight for your life.

I have always felt, whenever I get sick, mostly with colds or eye infections, that my body is betraying me somehow. It’s mind versus body. And cancer is really one of the ultimate betrayals.

Before I got Hodgkin’s lymphoma, I was in pretty good shape. I tried to work out almost every day, either going to fitness boot camp, vinyasa yoga or Bikram yoga classes. I was eating right. I drank a lot of water. I thought my body and I were cool.

Some people get really angry about having cancer. I don’t know if it’s because I have one of the “best kinds”—unlike lung cancer, which I was heading towards during my smoking years. Hodgkin’s lymphoma seems like kind of a mystery as far as causes go. It seems like bad luck.

Also, since cancer is your body’s own cells going renegade, it seems like a form of self-hatred to get angry at the cancer. It’s part of you, in a way. It’s like something else that you don’t like about yourself—a big nose or a slow metabolism or paralyzing shyness—times a million.

So I’m not angry. I’m just…hurt.

Until then, I will apply a cat to my left arm, in case that actually works. I don’t want it trying to play hooky and getting into all sorts of hijinks. Or do I?