A Return to Working Out (Plus a Cockroach)

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

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

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

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

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

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

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

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

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

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

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

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

I never said I was a good roommate.

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

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

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

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

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

A Love Letter to Working Out

I’ve started this post at least half a dozen times since I started my blog. It seems odd to be writing my love letter to working out when the most strenuous thing I’m up for is walking. My left arm is still a little immobile from phlebitis. I have a leukapheresis catheter in my chest that I have to be careful with, and I have a blood clot in my lung that leaves me winded after a flight of stairs. My hemoglobin is low, so I’m often and easily tired. I haven’t been able to work out for nearly a month, since before I went in for the last round of high-dose chemo.

Yet I still feel strong. Throughout the treatment—and now, more than ever—I’ve been drawing on what I’ve learned from my workouts and my yoga practice.

Physically, I did get some compliments on my blood pressure, at the beginning of treatment. Years of trying to perfect the savasana “dead body pose” in yoga helped when I had to stay perfectly still for scans and my radiation mold measurements. I will have to stay in good cardiovascular shape, especially as all this chemo and radiation takes a toll on the heart and the lungs.

But I think I can say that without yoga and fitness classes, it would have been a lot harder to get through all of this mentally. While I thought I was building muscle and flexibility, I was actually becoming stronger in ways I didn’t realize.

In December 2013, when I noticed a small bump that turned out to be two dislocated ribs, I was irritated that I’d have to modify my fitness routine for a month or two. That, of course, has turned out to be more than a year, since those ribs were dislocated by Hodgkin’s lymphoma tumors. I’ve had to take time off from working out, adjust my routines and generally change everything.

In between treatments, when I receive the OK to work out, I do what I can. Sometimes I wonder if it’s worth it, but when I think about how working out has helped me overall, I know that it is. The muscle tone will come and—in the next few months especially—go. But the benefits go way beyond that.

Change is often difficult, but it’s possible. This was probably the first thing I ever learned. I’ve said this before, but I’m not naturally a physically active person. I was a chubby kid and always the last person picked in gym class. Very last—after the kids with asthma and injuries.

It wasn’t just that I wasn’t fit—I’m also extremely indifferent to any kind of sporting competition. That won’t change. I will spend 10 minutes agonizing over a Scrabble word, but I lose interest in winning any kind of sport immediately. You want the ball? Have it. The promise of being left alone is enough for me to surrender. The opening scene to the old MTV cartoon Daria, where she refuses to hit the volleyball and her teammates eventually collide to cover for her—that is pretty much the animated version of me in gym class.

Yet I started working out on my own in high school, first with Cher’s A New Attitude step-aerobics video. (Her outfits are pretty fantastic.) I discovered I kind of liked working out, and eventually found other things I enjoyed—yoga and fitness classes. I’ve tried to make working out part of my everyday routine. Even though I skip a few days, intending to work out every day helped me to at least do it about five days a week.

I’ve also never been a morning person, but managed to become someone who regularly woke up at 5:15 or 6 am to go to yoga or boot camp class. I found I enjoyed this thing called morning, which I’d avoided for years. Also, it was helpful to roll getting out of bed and working out—two things I tend to put off—into one fell swoop of determination. So the night owl and the last person picked in gym eventually learned to be the early bird at class.

The hardest part is what makes you stronger. Those last few seconds in standing bow or being in a plank sometimes seem impossible. That’s when the instructor usually says something encouraging like, “These last few seconds are where the change happens!” Or: “This is the hard part, but here’s where you’re building strength.”

I’ve thought about these words a lot as I near the hardest part of my treatment. A few months of dislocated ribs turned into six months of chemo, which turned into more than a year of chemo and another three to six months of recovery. The most difficult part still lies ahead. Heading to yet another appointment or sticking on an AquaGuard over my chest catheter before showering, I’ve cried and declared, “I don’t want to do this anymore,” and sometimes, “I can’t do this anymore.” I’ve been sliced open and poked and poisoned for a year now, and I’m tired.

But I don’t have a choice. I’ve learned that just when you think you can’t do something anymore, that’s when you need to power through. It’s time to cue “Eye of the Tiger” and do this. The hospital bedside yoga and laps around the floor, dragging my chemo pole with me, will be my one-armed Rocky pushups. Right after the stem cell transplant, I’ll be physically weak and in a bit of a mental fog, but overall, tougher.

Patience. At this point, after a year of treatment, I’m impatient to get this over with already. A month in the hospital seems like an eternity. But I know that things always seem longer at the outset. Sometimes it’s just 45 minutes of boot camp or an hour-and-a-half of Bikram yoga, when I’m not feeling particularly ready to push myself. Every now and then, in the first few minutes, I despair. How am I going to make it through 80 more minutes?

But I do. I had the same feeling when I signed up for a 30-day Bikram yoga challenge. When I marked off those first few days, the month stretching out before me seemed so long.

I have to be patient. I have to draw on the patience that comes from working on the same 26 poses in Bikram yoga. Or the patience from a Kundalini breathing exercise. I can do this.

Encouragement and support go a long way. Almost every day that I’ve worked out or attended a yoga class, I’ve been told that I could do things that I often didn’t think I could. (Sometimes, I felt absolutely sure I couldn’t, but did it anyway.) Eventually, I started to believe it. That’s been helpful for when I’ve had to endure being poked for multiple IVs that give me the heebie-jeebies or sit still for another round of tests.

People in classes have always been supportive—and that also extends beyond the fitness center and yoga room. I’ve met some great friends through working out, and I’ve received such nice messages from my boot camp pals, people I’ve met through yoga and the barre3 community.

Once I finish my hospital stay, I know it’s going to be a long time to regain my physical strength. I’ll be easily tired, and it will be months before I even get back to “normal,” before I can even think about working out. But thanks to fitness and yoga classes, I have the strength, patience and support that I need until I am back to 100 percent.

 

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.

Taking It Easy

My doctor’s advice to take it easy has really been stressing me out. That’s not a good sign. In fact, I didn’t even think to ask if she meant physically or mentally because I was already planning to ignore her advice and wondering how I could make my boyfriend un-hear what my oncologist had just said.

He comes with me to my appointments to make sure I don’t ignore my doctor’s advice.

I got the results of my PET scan today, and I had asked if there was anything I should be doing to get better. I should have known that it would be the one thing I feel I can’t do, but that I definitely should do.

The doctor showed me the PET scan, starting with the first, taken in April, that showed the lymphoma as black splotches. There were quite a few of them—the large mass in my chest and neck, and a bunch of dots through my upper chest, as well as one big spot near my belly. The later scan shows just two spots—the one that had pushed my ribs out in my chest and the belly spot. It’s good news—they’re still shrinking and I won’t be getting stronger treatment, just the remaining four (now three, as of yesterday) ABVD treatments.

But whereas the first PET scan after four treatments showed dramatic improvement, the scan after eight shows moderate improvement. It’s slowing down, while I am getting impatient. So there might be some cancer left after all this is done. Maybe.

Since that second optimistic scan in late May, I feel like my life has been falling apart, mostly with the stress of finding a new job and new insurance. I can’t relax. Since June, it feels like I’ve had a heavy leaden pot of worry in the center of my being, roiling with a big worry and stress stew. I understand my TV cancer companion Walter White more than ever. I want control. But I feel like I have very little right now—not over my body, my finances, my emotions. The latter I can do something about. I still need to work on my attitude.

I don’t cry over hair, no matter what. I’ve cried over test results my whole life. I’ve always beaten myself up about not doing my best. One day In kindergarten, the teacher gave out little awards for being able to recite your address. I knew my address. I was so excited when it was my turn. And then, when all those expectant faces were turned toward me, I blanked. This type of performance anxiety still haunts me today. We had another chance the next day and I got my award. In the end, everyone got one, of course. It was a round piece of orange posterboard that said “AWARD” with a gold star and ribbons that the teacher had stapled to the bottom. I was extremely disappointed in myself for having to use my second chance. I felt as if I didn’t deserve it.

It was the only award non-sporty me ever received until my high school decided to give out letters for academic achievements, and I lettered in academics. I sat near one of my friends who was a star swimmer and track athlete and was in my AP and honors classes. She was really nice, so I know she thought I was also against the academic letters when she said, “What am I going to put on the back of my jacket? Nerd?”

I was secretly kind of proud, but I obviously didn’t have a letter jacket. I wondered if it was too late to join a sports team so I could wear my academic letter. I don’t care about sports much, though, and who gets the ball to wherever it’s supposed to be. I’d rather work myself up into a frenzy about grades and what people may think of me professionally. I really do need a nerd letter jacket. I still have the letter somewhere. The little symbol, instead of a football or volleyball, is a torch. Presumably to fend off the cool people with letter jackets who want to give you wedgies and shove you into lockers.

And so now I have test results that disappoint me a little bit. Today was like getting a B or C when you expected an A. Or not getting a tiny paper award when you expected one.

Yet the remaining spot near my belly is also a glaring example of how useless my previous worrying has been. I knew there was a spot below my diaphragm that was considered cancerous—it’s what put me in the Stage 3 Hogdkin’s lymphoma category instead of 2. But until I saw the scan, I had no idea where it was, and I assumed that it was a smaller area, late to the cancer party that had been going on in my chest and neck. I didn’t realize it was one of the bigger infected nodes.

For the past months during treatment, I’ve had pain pangs in my abdomen that I’ve assigned various possible causes in my mind, from liver failure to intestinal distress. It’s the cancer, probably (hopefully) shrinking —a variation on the same twinges I feel in my upper chest from time to time.  I picture it going down like this. Maybe the black dot on my PET scan is my heavy cauldron of useless anxiety.

I’m struggling now more than ever. Everything just got real. Before this week, I could still kind of pretend like this wasn’t affecting me. I had hair. I had insurance, which runs out at the end of the month.

I didn’t realize my veins were in such sorry shape. I have a little bump on my left arm where part of a vein has hardened. There’s been talk of a Medi-Port, which typically stays in for a year and gives me the heebie-jeebies, though it looks a tiny version of Tony Stark’s Iron Man implant. My other option is the PICC line, which also gives me the heebie-jeebies, but stays in for less time.

Tons of people have had this done, so I need to admit to myself that if I need one, I need one, despite 100 percent chance of the heebie-jeebies. I need to stop trying so hard to stay “normal,” whatever that is. I don’t mind the baldness. I wear my wig only for other people, so I don’t freak them out. The same with the headcovers—that and to shield my head from the sun. (The pork pie hat, I just ordered, though—that’s for me.)

I’m hoping that since I have only three treatments left, my veins will hold out. The nurse yesterday, when she saw my tiny veins, told me she didn’t see how I got away with not having a port. My left arm just wasn’t accepting an IV, so we used my right again—for the third time in a row. When she was giving me the first round of drugs, though, she seemed more optimistic and said I probably have at least three good veins left. That’s all I need—for now!

I’m a little disappointed in my left arm for giving out on me. My left side, where this started and where the lymphoma remains. Side of my spare rib, my weaker eye and the ear that sticks out like the handle of a pitcher. A new study shows that there may not be such a thing as left-brained or right-brained thinking, so at least my creative and thoughtful right brain doesn’t have to forgive the left brain for those shortcomings. It turns out I’m just bad at math. I have a hard time distinguishing my right from my left anyway. I always make that “L” with my thumb and forefinger, no matter what—in the middle of yoga class, while giving directions to people who visibly look alarmed and doubtful (as they should be) when they see me do the hand “L.” Oh, well. It’s about body teamwork at this point, I suppose.

I also talked to a social worker yesterday, about what I would be eligible for now that my income has decreased. That helped—at first because I had to pull it together to talk to her. It’s the first time I cried while I was at chemotherapy. And it wasn’t even about bad news, just OK news. I really need to take a lesson from my veins and toughen up.

Plus, the social worker reminded me of some of the programs MSKCC has in place that I should take advantage of, including the Visible Ink writing program and the Look Good Feel Better program. I told her I’m not really into wigs, but she said there’s also makeup application tips. I haven’t been wearing much since my recurring eye infections, not that I wore that much makeup to begin with. But I think the social worker stressed the “feel better” part of the program, probably because I was still a little teary when she walked in. I put about as much effort into my beauty routine as ever—very little.

I prefer to spend my time working out—at first, in my early twenties, it was always to stay thin or lose weight. It wasn’t until later that I realized I worked out because I truly enjoyed it. It’s odd that after years of not caring about sports (and I still don’t), I’ve found what keeps me grounded is physical activity. It balances me out.

I’m eager to get back to my classes and yoga. Yet how many times have I heard that yoga isn’t just the poses? It gave me balance and sanity, and now that I’ve been told to take it easy, I’m going to have to practice less vigorously, but no less mindfully. But that’s another post completely. I’m eager to get back to working out, but this new “take it easy” advice probably doesn’t include kickboxing. And a Medi-port or PICC might limit my mobility for a bit.

I was beating myself up about something last week, and one of my former writers said, “Time to practice some self-compassion!” She’s right. I need to update my to-do list. It still will have jobs to apply for and deadlines to meet. But I’ve added three more reminders: Self-compassion, take it easy and stop worrying.

Tears of a Clown

This is hard for me to admit, especially after so many people have told me how tough I am and have complimented me on my positive attitude. But I’ll let you in a little secret: I’ve been bursting into tears recently.

Most of the time, I can’t even tell you why. Usually, it’s not even real crying—it’s more of a passing wave of sadness that results in 10 seconds of tearing up or a single whimper.

Usually, I’m kind of a goofball, joking around and making light of situations. So it’s been really hard for me, personally, to deal with the seriousness of this cancer situation.

I’ve seen a lot of articles with titles like “10 Things Not to Say to People with Cancer” or “Things to Never Say to Cancer Patients.” Those definitely apply to some people, but I’m pretty hard to offend. In Are You My Guru? How Medicine, Meditation & Madonna Saved My Life, author Wendy Shanker, who has a rare autoimmune disorder, has a great chapter on things not to say to people who are ill—and she has an amazing sense of humor, which I appreciate.

I myself am horribly awkward in these situations—including the present one. I don’t know what I would say to myself. And I generally clam up when someone tells me something awful, or stick with the honest, “I don’t know what to say.”

With a few exceptions, no one has said anything wrong or shocking. When people talk to me about my own cancer, I’m still often the awkward party.

I suppose the compliments I get now are different. “Your hair looks full.” If someone commented about my hairiness pre-chemo, I don’t know how I’d feel. But it’s currently a good thing.

Some people have expressed worry that complaining about other things when I have cancer seems selfish or trivializes my situation somehow. I don’t think so. I don’t expect the world to stop for my health concerns. There will be heat waves and heartbreaks, and I will still be here to listen.

I sometimes wish I could stop other aspects of my life, but then I think having less to do might be part of the current crying situation. I’ve kept myself busy with work and social obligations. Now that work has stopped, I continue to book 9 to 5 and beyond with job search, applications and freelance pitches and work.

I’ve been working really hard at working really hard. I’m not sure if I’m avoiding dealing with cancer or this is my way of dealing with it.

So why the crying? I feel a little helpless and scared. So many things seem out of my control right now—including my own body.

Whenever I’ve been sick with even something trivial, I feel so betrayed. I’ve done yoga since the late ’90s, when Madonna made it trendy. There’s a lot of talk about the mind-body connection, but I still feel as if they’re at odds. Even my preferred form of yoga—Bikram yoga, a series of 26 postures in a room heated to 105 degrees—doesn’t focus on harmony. You’re often pushing your body to a limit, very carefully.

This isn’t the first time I feel as if there’s been a struggle for control. Nine years ago, I had panic disorder. It started while I was in a waiting room while getting a tire changed. Suddenly, I felt dizzy, and my extremities started to go numb. I was a little nauseated and started to sweat, then I couldn’t breathe. I also felt like my brain was trying to escape my head. The best way to describe a panic attack is that you feel as if you’re dying and losing your mind at the same time.

Panic disorder happens when you’re so worried about having another panic attack that you keep inducing panic attacks. It’s a fear of fear itself.

A panic attack itself is your body’s fight-or-flight response at the wrong time. A rapidly beating heart might help if you’re being chased by a predator, but when you’re waiting for a tire to be changed or driving, it’s extremely inconvenient. It’s a physical thing—something a lot of people don’t understand. People often tell you to calm down, but it’s not an emotion. It’s a physical reaction that’s happening for seemingly no reason, and that’s why you also feel crazy.

When you end up in the emergency room a few times because you feel like you’re dying but the doctors don’t find anything wrong with you, it’s really hard to not feel like you’re losing your mind. You’re often not taken seriously. Doctors openly scoffed at me and mocked me. At one urgent care, a sympathetic nurse who suffered from panic attacks after the birth of her first child listened to me and made me feel somewhat sane. I’m not saying panic disorder is worse than cancer, but the latter is taken seriously by the medical community.

Panic disorder makes you feel so alone. And you often alienate yourself, compounding the problem. A lot of people become agoraphobic or self-medicate with alcohol with panic disorder. I feel as if I lost about a year to a year and a half of my life to it. I was able to overcome panic disorder through a mixture of medication, cognitive therapy and educating myself about it. Writing an article about panic disorder and learning so much about it really helped more than medication. (If you want to read a great book about someone overcoming panic disorder, I highly recommend Priscilla Warner’s Learning to Breathe: My Yearlong Quest to Bring Calm to My Life.)

I found myself talking a lot about panic disorder, but I haven’t talked as much about the cancer. But I talk about the panic attacks more openly because they’re in my rearview mirror. They’re in the past tense.

I haven’t told everyone about my diagnosis. There was no Facebook announcement. I don’t link to my blog on my own social media. I’ve been telling people on a case-by-case basis. And even when I tell people, I follow up with a quick, “But I’m going to be fine!” and reassure them that things are going well. (Both are true.)

In fact, my boyfriend goes with me to my doctor’s appointments not only for support but to also make sure that I don’t downplay my symptoms and side effects. I want to reassure the doctors that I am fine, but he keeps reminding me that they really need to know about any symptoms.

So a lot of people don’t see the dark side—only my boyfriend in many cases, and that’s because he’s around. And my two cats, who sometimes hear me announce, to no one in particular, “I’m sad.” Though sometimes I address the nearest feline with, “Oh, kitty. I’m so sad.” Just a sad cat lady talking to her cats.

I generally find it difficult to talk about my Hodgkin’s lymphoma. That’s why I write about it. Maybe I’ll feel more comfortable discussing it in the past tense. I certainly hope that’s the case by the end of the year. I tell myself if I got through panic disorder, then surely I can get through this, with support and some of the best medical treatment around, even though my instinct is to try to deal with this alone. Like I’m some sort of wild animal who will be left behind or eaten if I show weakness.

But doubt lingers, like the sore throat I’m experiencing. (Not another cold and eye infection! Please!) This is irrational thinking, but that last time I randomly burst into fits of tears was at the very beginning of my diagnosis, so I wonder if the treatment’s stopped working. It was, of course, also a time of great uncertainty.

At that time, right after my diagnosis, I was also experiencing night sweats. At night, I would lay down a yoga or beach towel on my bed and put on my moisture-wicking workout clothes, with extra clothes by the bed for the nights I would wake up drenched and have to change. I felt as if the night sweats were my body’s way of grieving for itself and what was happening—as were the bouts of crying. It was like my body was a sponge full of sadness that couldn’t escape through my tear ducts and had to seep out my pores at night, when I couldn’t be on guard.

My next PET scan, which will show the chemo’s progress, is in a few weeks. Even if I need longer treatment or stronger treatment, I’m expected to get better.

For now, I will let myself cry and will move forward, until I can say, “I had cancer.”