Day Zero

Tomorrow is Day Zero, as it’s listed on my treatment calendar. In the late morning, I will receive the six million stem cells that were collected a few months ago. I’ve heard doctors and nurses refer to it as a re-birthday.

While tomorrow is the big day, it’s probably going to be relatively anti-climactic. They’ll do the stem cell re-infusion in my room, through my catheter ports, in a series of four injections. Mostly, I’m told, it’s going to be smelly for a day or two, because of the preservatives used for the stem cells.

Beforehand, I’ll get some Benadryl, sure to make me sleepy, as well as Ativan, which they say is for nausea. I was on Ativan briefly when I suffered from panic disorder years ago, and while the drug itself is an anti-anxiety medication, the thought of taking Ativan has always made me irrationally nervous.

The stem cell transplant process really already began a while ago, when I started the radiation treatment. Today, I finish up my last bag of chemotherapy at around 5 pm, and the autologous stem cell infusion, slated for around 11 am, is the very last part of this treatment. (So, right now, almost two steps down and one to go.)

After that, it’s all recovery. People have asked me why they’re giving me these stem cells that they harvested a few months ago. The chemo regimen that I’m on is about four times stronger than the previous high-dose ICE treatments I received, so it damages your bone marrow. (The radiation also has its depleting side effects as well.) My red blood cells will be low, so I’ll experience fatigue, while my low white blood cells will put me at higher risk for infection. Low platelets make you prone to bleeding.

So the stem cells are to give your body a boost towards recovery. In the meantime, however, there’s that dip when everything is low and the side effects are at their maximum for about seven to 10 days—hence the fatigue, nausea, mouth sores, fever and other things expected during this coming week.

I’ve heard multiple times, though, that once your counts come back up, you immediately turn a corner and start to feel better, like a switch going off.

Right now, I’m just starting to feel the side effects and find myself edging on optimum crankiness. It’s that point where you don’t feel well, but still have the energy to potentially be a big jerk if you wanted to be. Overall, I’m going to try to lay low today and slip into my hermit mode.

My throat is dry, and my first mouth sores are appearing. When I eat, my digestive tract is rocked by violent burping that sometimes develops into hiccups.

Tomorrow marks the last step on a fresh start that will hopefully close a year of treatment for my Hodgkin’s lymphoma. I’m only cautiously optimistic, however. While this is supposed to be “the best type of cancer,” with mostly a positive prognosis, having refractory Hodgkin’s lymphoma essentially puts you in the unluckiest of the lucky category. I see and hear stories of people battling Hodgkin’s lymphoma for two, three, eight years out, and it scares me, especially since I have that mysterious spot that still lit up on my last PET scan.

One doctor seems to think it’s Hodgkin’s lymphoma spread to the pancreas, while another doctor doesn’t seem to think that’s possible. All doctors seem confident that this radiation and chemo combo is the best thing for me, so it seems pointless for me to worry. As that old saying goes, worrying is like praying for something you don’t want to happen.

And yet…I worry. As the social worker last week sat down to talk to me and get to the root of my mental well-being, we talked about my fears about this transplant. My biggest fear is that I won’t get better. It’s not death that I fear. (It’s unlikely, but I’ve thought about it, and it doesn’t bother me as much as everything that might happen before it.) It’s the thought that this cancer just won’t go away.

I’m tired of not living life on my terms anymore. This makes me feel like a petulant child to say this—for who does really do whatever he or she wants? But I’m tired of having an asterisk on the end of everything that I do. (*If I can travel by then. *But I can’t be in the sun. *When I can possibly work full-time.) And I’m terrified of taking life back up again, just to have the lymphoma come back and reclaim its hold.

I especially feel terrible, because I see so many brave and inspiring people fighting this disease and other forms of cancer. I feel like I don’t have the strength sometimes.

Right now, I’m just going to tap into the reserves and prepare myself for the upcoming brutal week. I don’t need to worry about my scan months from now—I just need to focus on the closest horizon. I’ll find the strength I need when I need it.

Pulmonary Embolism and PET Scan Results

As I was taught in journalism school, I’m going to put the most important information at the top. I have a blood clot in my lung, so I’m going to take blood thinners. Also, my PET scan showed almost no cancerous activity. I have had two remaining stubborn spots that ignored the ABVD chemo and shrunk slightly with the Brentuximab. Two rounds of augmented ICE finally got rid of the spot in my chest. A tiny bit remains in the belly area, but the good news is that they’re going to proceed as planned, with the radiation and the stem cell transplant.

I’ve been pretty sedentary lately. But over the past week or so, I’ve felt winded—really winded walking up the short flights of stairs to our third-story apartment. I also was really out of breath after running for the bus the other evening, but it was worth it. It was really rainy and windy, and I’d taken a gamble that the bus might be waiting at the stop by the train station. It was, and I had to walk only a block home. I consider taking this risk a great success now that I don’t get out much.

Yesterday, I went to the near-top of the Empire State Building. Friends were in town and they offered to be my tourist beards to this attraction, which I’ve never visited. I now have seen everything in New York City there is to see. (Literally—you can see everything from the near-top, which is considerably cheaper than the absolute top.) You have the option of walking up six flights of stairs or taking an elevator to the observation deck. We looked at one another for awhile, all hoping someone would suggest the elevator. Finally, I cited my health and recent shortness of breath to avoid the stairs. Also, walking up six flights of steps is harder than it sounds. I did it once when an elevator was broken and deeply regretted my decision between floors four and five.

But now I can cite my pulmonary embolism as a reason for my shortness of breath. Although the doctor pointed out my hemoglobin is low, and that can also make you more tired easily. (That explains why I needed to go to bed after cleaning the apartment yesterday.) I suppose I should have noticed something amiss, but it’s hard to tell what isn’t normal anymore.

I also forgot to ask if there was anything I could do to avoid clots—other than to not have Hodgkin’s lymphoma or chemo. I seem particularly clotty, although I don’t think my arm, which is feeling a little better, showed any clots. It’s just irritated veins, I guess.

On Thursday, I’m going to have some ultrasounds of my legs done to see if they should consider filter that would filter out any more blood clots. (It’s one of those things that sounds made-up. Really? They can do that?) And I’m on Lovenox for another six months. I have those weird, hard bumps under my skin from the Neupogen injections, so I feel as if I’m running out of places to give myself shots.

As for the PET scan, it’s good-ish news. I’d rather have this stubborn cancer spot be gone already, but I’m also glad that it’s not going to hold up the next steps for radiation and stem cell transplant. The doctor showed me the pictures, and everything looks much better.

I’m meeting with the doctor about the next steps for radiation and transplant on Thursday, so I’m still on track! I won’t be in the hospital this weekend, but hopefully by the following weekend, I can start my stay. Not that I’m looking forward to it, but I’m looking forward to being on the other side of that stay.

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 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!

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...

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...

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.

A Happy Suprise

I got my blood drawn this afternoon and 15 minutes later, my room phone rang. It was the doctor. My blood count reached the magic number of 500 and I would be released! After the general consensus had been a Sunday discharge, this was an unexpected bit of good news.

As nice as Memorial Sloan-Kettering Cancer Center is, I was packed and ready to go in 20 minutes. After this morning’s breakfast Nutella and banana crepes and my jambalaya lunch, I was looking forward to tonight’s stir-fry shrimp, but I’ll be back at the hospital in a week. I also didn’t have time to check out the recreation center again and I was going to avail myself of the free board games tomorrow.

Also, I discovered there’s a pool table. How do you navigate a pool table with an IV in your arm?  I also discovered that there’s an afternoon tea service. If the hospital had a happy hour and I could get a beer to go with my pool game, I might have found it harder to leave.

But I was tired of wheeling around an IV stand and I’d gotten away without peeing in a hat until today. I did figure out how to take a hot shower. I don’t know what it is about dials, but I constantly misinterpret them. I’m terrible at math, don’t know my left from my right and I can’t figure out dials. I think there’s some kind of diagnosis for that, other than being dimwitted. (I repeatedly burned things in the oven our landlord brought up to replace our broken one until I realized I had been misreading the dial. I had been turning things up to 400 or 500 degrees.) So in this unfamiliar shower, I had the dial pointed toward lukewarm instead of hot.

Today I found myself packed and waiting for my IV removal, two days before expected.  I didn’t even have to change my pants, as I was wearing my brand-new dignity pants, suitable for public viewing. I threw on my boots and sweatshirt and was ready to go.

The only hitch was the car service I called to come pick me up. Since my boyfriend was working, I wasn’t being released to anyone and the nurse had to witness me getting into a cab or car. When I called right before 5 pm, the operator said 15 minutes, so the nurse escorted me to downstairs. At 5:18, I called to check. At 5:25 I had to call back after being on hold and forgotten about. “Two minutes,” snapped the person who answered the phone. Seven minutes later, I called to check again and was told the car was outside. After walking through the rain and asking several cars if they were for me, I had to call back because he’s hung up on me. By this time, I couldn’t get through. At 5:38, I called and was told to wait five more minutes.  At 5:41, I called to cancel. At least I gave them the courtesy of an update. The front desk called me a car service that arrived in three minutes.

By this time, I was in tears, upset and having to have someone else waste her time, even though she so kindly waited with me and eventually ended up comforting me.

It’s always the little things that push you over the edge. Or push me over the edge, at least. Being back in the hospital was disappointing, but I had been OK up until the point where I couldn’t leave because of a car service. That was my breaking point. The car service just acted like they were doing me a favor. They had obviously lied about when they would arrive and even being there and then didn’t seem to understand why I was upset that they were almost an hour late. Once I even got into a car, finally, from another service, I couldn’t stop the tears. It wasn’t about the car anymore. The dam had broken and I just let things flow out. Quietly. Maybe a dam isn’t the right analogy. It was more like a slow leak.

I had been so angry, I worried my blood boiled and threw off my counts again.

But all is well, once again. As I type this, a cat is weighing down my right arm with her paw over my hand. I have a week at home, and all is right with the world.

Rushing to a Stop

As always, I am struggling between ambition and laziness. I usually resolve this by sitting all the way back on my pillows and typing with my keyboard on my knees. But since the ABVD and ICE, my circulation hasn’t been as great, so my hands go numb in this position.

All night I tried to resolve the nonstop, self-imposed chaos that I’d subjected myself to before the hospital stay. Work or work out or have fun, but always stay as busy as possible.

What happens when you don’t stop then have to stop all at once? A cliché. Now that my body has come to a screeching halt, my mind spins aimlessly like a top landing on incongruous topics.  One night in the hospital, in a semi-sleep state, the murders from my mystery book haunted me and it fell to me to solve them. What was the connection between all these killings? I fretted, as I tossed and turned. How would I catch the killer?

Not even a seemingly innocuous book about food entrepreneurs provided relief. All that night, I wrestled with questions like: What is the valuable lesson a food entrepreneur can take away from this chapter? What’s the business takeaway here?

And somehow, in my dreams, I also had to figure out my own medications and cure my own disease. Everything was on my shoulders for my busy mind to solve.

I’d wake up, thinking I had the key to my book dilemmas or medication schedule only to be confused. Not even fully realizing that it wasn’t my problem to solve, I’d slip into another restless sleep, rushing to solve another problem.

All last night, I had similar dreams. I’m worried about the “chemo brain” or brain fog that I’ve heard accompanies these treatments. That’s what keeps me from doing more. Sending out misspelled, crazy missives. Or half-formed thoughts, like the ones in my dreams, darting away before I can get hold of them.

Mostly, I feel a little sleepy all the time. Like I could just lie down anytime and take a nap. The good thing is that I can. But it often doesn’t mesh. At times, it feels as if it’s my brain that’s sleepy and my body that feels wide awake, as it should after unlimited sleep. Yet it’s my body that’s actually taking it easy, as my blood counts drop and the chemo hits. My mind races around, trying to finish up last minute chores and assignments.

My digestive system is similarly not in sync with itself, but this is on purpose. From what I understand about these anti-nausea drugs, they work in your brain, not in your stomach. I could be wrong, but according to what I’ve heard, my stomach lining is well aware of the chemo and would be reacting accordingly. But the drugs tell the brain not to worry and in effect, not to be nauseated. (Essentially, that makes my stomach look unfairly like a liar.)

To be safe, I’ve been sticking with mild foods like oatmeal and soup. But another part of me — the unwise part — wants a big bacon cheeseburger. Every now and then, I get a little pang from my stomach, letting me know that, while everything is under control, don’t push my luck.

So I find myself on this hiatus of sorts, where I do what I can and what I’m up for. I can resume being a prolific Facebook poster, for instance.

It’s somewhat of a relief to wake up and not have a looming list of to-dos. I wouldn’t suggest cancer as an excuse for a staycation or a reason to take it easy if you can find another way. But I think that I haven’t taken some time for myself since before I lost my job this summer. Or before I found out about the cancer. I can’t even tell you the last time I truly relaxed without something else nagging me.

As I slip into a cat-like existence of naps and nothing, I still have to learn to let go of everything I felt I should be doing. When I get a good night’s sleep, not peppered by frantic problems, real and imagined, then I’ll be successful.

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.