Hospital Update

In the flurry of wrapping up work projects and seeing people before my hospital stay, I’ve neglected this blog, so instead of my ramblings and random musings, here’s a brief update.

I checked into the hospital on Sunday. I finished one week of outpatient radiation and now I’m receiving my second week of radiation as an inpatient. I wrap up the Total Lymphoid Irradiation (TLI) on Friday. On Saturday, I begin four to five days of intense chemotherapy (cyclophosphamide and etoposide), followed by a stem cell transplant. Then I feel terrible for seven to 10 days before I start to feel better.

Once my counts come back up, they’ll release me. Overall, I’ll probably be here for about four weeks or so.

I wasn’t sure whether I’d be up for visitors, but this week I feel OK. I’m not sure if I’ll feel sleepy this weekend from the chemo, so I can have visitors through tomorrow, but I’m also in radiation from about 10 am­–noon and 6–8 pm. But please don’t feel obligated to stop by. After Wednesday, when I’m feeling awful, I probably won’t want to see anyone—or remember seeing anyone. When I’m on the upswing, I’ll let you know!

Once I get out, in early to mid May, I’ll have to stay home at rest for about a month and then I can slowly get back to normal in the next three months or so. But it’s slow-going, and I have to take precautions because of my compromised immune system for quite awhile. (It’s tough for someone who lives by the 5-second rule, which has recently been proven to be true.)

Thanks again for all your posts, notes, emails, cards and kind words! I’ll try to update this blog as long as I am coherent.

Unofficial Visitors Policy

Some of you have asked about visiting, and as Greta Garbo was famously misquoted as saying, “I want to be alone.” I think.

That’s not to say I don’t want to communicate via Internet and phone. I had a few visitors during my most cognizant stay, when I felt the most well, and that was nice. But this isn’t going to be any fun. I wouldn’t be there if I didn’t have to.

The worst way to put this is that I’m going to get burned from the inside out the first five days, followed by seven days of being continuously poisoned intravenously. Then I’m going to be sick and sleeping — and, according to what I’ve heard, in a zombie-like state. Someone who’s been through a stem cell transplant said people came to see her, and she didn’t remember. The last week, I’ll be recovering, but I still expect to be in a haze.

I hate to be one of those people who inspires a Dear Abby letter. If you really want to come visit, you can. I think it’s nice that people want to, and I don’t want to hurt anyone’s feelings. But honestly, I’d rather see people when I don’t feel the worst I’ve ever felt. Everyone’s been so supportive and nice, so I do feel bad. But again, that same person who had been through this said that there came a point when she had to ask people to leave and she had to learn how not to feel bad about it.

If you happen to be around and want to drop by, that’s OK. But if you plan to come to New York specifically to see me in the hospital, please don’t. Unless you’ve always dreamed of coming to New York without the obligation of seeing me very much.

I just honestly believe I really won’t be up for visitors. Like I said, that could change. I won’t have a roommate this time, so I won’t feel pressured to win a popularity contest. (Because you know I’d feel a little rivalry.)

If you’re worried I’ll be bored, I don’t think I will be. I grew up as an only child on a cul-de-sac with no other kids. I’m used to entertaining myself. And I really do think I’ll be sleeping a lot, if augmented ICE was any indication of how I’ll feel.

It’s possible I might change my mind, at least for that chemo week, before I enter the zombie part or “hell week” as it’s sometimes called. (I’ve thrown up on most of the people I’ve gone to college with, so this might be your big chance to join that exclusive club.) You can check with my boyfriend for the latest!

Here are the rules for visitors.

Visitors have to have received flu shots for this season. My boyfriend is going to get his first flu shot ever. I can’t say anything to its efficacy. I’ve had flu shots and I’ve not had flu shots, and I’ve never gotten the flu. (Well, not ever. I had it once in second grade and I had the worst flu ever—nicknamed the Thanksgiving Disease by my group of friends who survived that terrible 1996 plague—in college.) That said, I’m really bummed that this whole procedure is going to obliterate my immune system. My old immune system was pretty great, and I rarely got sick. Except for the cancer. So I guess it’s back to square one.

Visitors must wear face masks, gloves and sometimes gowns. I hope most people wear formal gowns and tuxes when they come to see me anyway, but the hospital will provide gowns. (I don’t think they’re hospital gowns and I don’t think you have to get naked under them, but if you do, that’s your choice.) If you wear a face mask, I’d like you to pretend you’re in the band Clinic.

Visitors can’t have any germs. Well, they can’t be sick at least. No cooties!

No kids younger than 7. As much as I complain about missing my cats as a cat lady, this must be a very sad rule for parents of young children undergoing stem cell transplants.

No live animals or plants. The last time I was in the hospital, a bed bug-sniffing beagle came around as a precaution. I had a scheme to dress the cats as beagles, but I decided not to compromise their dignity by disguising them as dogs.

After the transplant, I want to see everyone, but that’s not going to happen right away, sadly. I’ll be back to square one with my immune system, so I have to stay away from crowded places for three months. I realize New York City is a pretty crowded place. But it’s advised to stay away from places like grocery stores at peak times, something I try to do anyway because I work at home and don’t need to rub elbows with the hoi-polloi. (I assume this also means the train, which is supposedly “filthy” and officially plagued by “schmutz.”) I have to avoid people with colds and viruses and such, especially for the first three months.

Post-transplant, I’ll also probably have trouble concentrating or remembering things. (I know some of your will say I had trouble with that before — insert comedy rimshot here.) It’s something referred to as “chemo brain,” a lingering mental fog.

So far, I’ve noticed this only a few times, after emerging from ICE. In one case, someone sent me an email about one thing and I kept responding to the subject we’d discussed in another email. It’s been hard concentrating during chemo, when the fatigue sets in, and afterwards, when I awake from my days of sleep. After that, it’s a bit like Lazarus rising from the dead or Sleeping Beauty awakening from her spell—or at least how I imagine it would be—it takes a little bit of time for me to remember everything that was going on before I went into chemo-induced hibernation. If I feel as if I’ve been asleep for a thousand years after a few days, I think a week or two will be harder to recover from.

In any case, please bear with my forgetfulness and general confusion—as you always have. I will remember an anecdote in detail from 1999, but I can’t remember my keys. And I get some very different things mixed up as it is. I sometimes get Gary Numan and Randy Newman mixed up. Oh, and Billy Bragg and Billy Squier. I also get Tinder and Grindr confused, so it’s a good thing I don’t online date. Mostly it is confusing to me. If you’ve talked about one of these subjects and I’ve looked puzzled, I’m just working this stuff out.

So in short, it sounds like, for at least three months, I’ll be easily tired and worn out, but I can slowly start to get back into the swing of things. And visit—or don’t. I’m just going to be exhausted, and I might smell like garlic.

Hopefully I’ll be almost back to my old self by my birthday in October!

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.

Day One

Today is the first day for me in the hospital, the first day of three days of augmented ICE, which seems likely to turn into four days. My admission was booked for 1 pm, and I got to my room around 5:30.

So far, aside from not being able to bend my arm because of the IV, it hasn’t been too bad, but that’s because the chemo hasn’t started yet. It’s supposed to arrive shortly. But here are the highlights:

1. I’m a little bummed about the predicted nausea, because this menu looks pretty good with a selection that includes short ribs, vegetable stir-fry and Asian dumplings. There’s a breakfast burrito special on Wednesday, and I am already looking forward to it.

Tonight I ordered the mozzarella sticks, one of my very favorite things to eat. There were only three through. I’m kind of concerned about how much hospital food costs. Is it like a hotel minibar? Otherwise, I’d be eating some spring rolls and pizza right about now.

2. For the next 10 hours or so, I have to pee in something called a “hat,” a habit I hope to break myself of before returning home so things don’t get awkward.

3. I have to take this IV stand with me everywhere for the next few days, including the shower.

4. I miss my boyfriend and my cats.

5. My bed puffs up and sighs every now and then, so it’s like being on the chest of a sleeping giant.

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.