Hospital Life

Months ago, I told myself I would post every day while I was in the hospital, but I quickly realized that wouldn’t happen. I’ve been busy getting radiation, starting chemo and trying to wrap up some work items. At least this first week in the hospital has gone by quickly. As I mentioned, it’s strange to have a cut-off date when you know you’ll start to feel side effects, so I feel as if the window is closing to update the blog, have visitors and get other things done. My deadline approaches, so here’s a post on my hospital life this past week.

Radiation. On Friday, I wrapped up my week of TLI (total lymphoid irradiation), completing 20 total sessions of radiation. Last week, the lymph nodes in my neck were swollen and sore, but that’s expected. I’m told the glands don’t like the radiation. Later on, I will probably experience a sunburn type of skin reaction, as well as mouth sores and a sore throat that makes it difficult to swallow.

The worst part of the radiation, for me, were the measurements they took the Fridays before they started the radiation. It required staying still, in the body cast they’d created for you, for a long time. In both cases the time ran over the usual 45 minutes to about an hour the first time and an hour and 15 minutes the second time. I’m pretty good at being still for long periods of time, but I had to not move for about 15 minutes to half an hour longer than my comfort zone. And once you’re past minute one of that zone and have the fidgets, it seems like an eternity. Still, it wasn’t too bad. (And when they’re radiating your insides, I understand their need for precision.)

During outpatient radiation, I would trade my shirt for a gown, then lay down in my mold, while they adjusted my position on the table, darken my tattoos with a marker and make some additional marks. Then they would radiate the two portions where there had been residual cancer in my chest and belly. The machine would flip around and radiate the front, then the back. (It reminded me of the scene in Logan’s Run, where Farrah Fawcett is offering to give Michael York a facelift but someone messes with the lasers. As I’ve noted before, this film that I saw multiple times during my childhood really influenced my ideas of the future.)

My outpatient treatments were six hours apart, so I was never sure if I should go back home to Brooklyn or wander around looking for WiFi with my elderly (in tech years) computer that needs to be plugged in to get much a charge these days. I also ended up being on the train during rush hour. Usually, this wouldn’t be a problem for me, but I’ve been a hermit for a few months. And in stark contrast of how unfailingly nice everyone is at the hospital, I was ill-prepared for the cruelties of New York City at rush hour. I expect I’ll have to re-enter society slowly once I’m recovering from my stem cell transplant.

Inpatient radiation was much the same, though the set up for the TLI would take a bit longer, and I was wheeled down from my hospital room. I also sometimes had student trainees the last few days of treatment, not that this added much to the time. I was told they don’t get to see many TLI treatments so I’m glad my radiation was a treat for somebody.

On the first day, I was told I could pick a music preference or channel, but I blanked. I couldn’t think of anything appropriate, so I didn’t give them any suggestions and spent some time listening to classic rock, the Billy Joel channel and adult contemporary pop music, but it provided food for thought as I was radiated.

I gained a new appreciation for Adele. “We Didn’t Start the Fire” really doesn’t stand up to the test of time. Coldplay is still boring. I also heard a lot of John Mayer songs, and I don’t get why people like his music. I tried to spend one session trying to name all the starlets he’s dated, but the radiation treatments don’t last that long. I also tried to think of radiation songs, but I could think only of Blondie’s “Fade Away and Radiate.”

Food. My throat hasn’t started to hurt yet, I’m still free of mouth sores and my appetite is still OK. I’m on a Zofran drip, though I can tell there’s a slight rebellion going on in my digestive tract. As I’ve noted before, it’s a strange feeling of knowing the mechanics are a little off but not being able to feel the effects. It’s like seeing your tire blow out and feeling only a slight wobble but still being able to continue driving your car with no problems.

I’ve been trying to enjoy chewing at eating as long as possible, before I can’t eat. I managed to eat all my desired specials this week: Nutella crepes, Mexican bean soup, a Sloppy Joe, Asian vegetable soup, shrimp in garlic sauce and breakfast pizza. I also look forward to the afternoon tea service more than I should, because the tea arrives with a little pastry—a walnut muffin, a mini red velvet cookie with white chocolate chips, some of the best scones I’ve had in awhile.

The indigestion from the radiation and chemo has thankfully been my worst side effect so far, and I’ve been getting extra medication for that. I had the hiccups in the middle of the night, but they didn’t last long. I’ve been trying to stick to a soft diet of soups and cereals, but have been waylaid my some of the daily specials. Today I had a hot dog, but I have a plan of eating small breakfasts and dinners and a substantial lunch so I can digest during the day.

I hate seeing food go to waste to the point where I’m weird about it. With so many of the trays arriving with condiment packets—salt, pepper, sugar, honey—it was only natural that I would start condiment hoarding, in case I needed to dip into my stores at a later date. I had them visible on a shelf, but I realized my boyfriend would frown at them and throw them away while I am plugged into the wall and unable to stop him. I’m considering putting them in my room safe.

Oh, I’ve also been eating candy, though that’s probably going to come to an end soon. I am now in possession of two Easter basket of goodies, and another friend brought me a giant Reese’s egg. And someone else thought to combine the cat theme and the candy theme with Katzenzungen, German chocolates with pictures of cats on the box.

I also got a picnic-type basket filled with packaged cookies and cakes. There was a tense moment when the nurse wasn’t sure if the desserts were approved for me to eat or not, so I briefly considered eating as many as I could while she was gone checking. But they were not confiscated.

Exercise. If there’s one thing that’s been drilled into my head over and over again during my preparation for this stem cell transplant, it’s the importance of staying active. Or, at the very least, not staying completely prone in bed.

My doctor and nurses told me that when I’m not sleeping, I should sit it in a chair. Being flat for too long increases your chance for contracting pneumonia, so they want you elevated.

The doctor told me that I should also always sleep at a 30-degree angle, at least. With the adjustable bed, this is possible to measure, but my attempts have been only partially successful. If I sleep on my side and wedge myself in with pillows, I can maintain this angle, but I’ve woken up a few times flat and scrunched up at the bottom of the bed.

Right now, it’s the easy part. It’s going to be after the transplant when it’s going to be hard to get moving and find motivation to sit in a chair.

Though I’ve said this before, I’m naturally a sedentary person and, as much as I love working out, it really takes me a lot of motivation to do so. Once I stop moving for a period of time, it’s extremely easy for me to slip back into my natural sloth-like state.

Since I’ve been here, my counts have been up and down, so I’ve been allowed to do laps in the hall for only three days since I’ve been here. I’ve heard 14 laps is a mile, so I’ve been trying to do that, but I lose count.

Yesterday on my walk, I found the designated room where visitors can eat. I peered through the window from the hall, and a man was about to take a pizza out of box. I thought it would be funny to stand at the window, with my gloved hands against the glass, wearing my medical mask, but it’s one of those things you only think about doing, because it would also be weird.

It’s not the pole filled with bags of chemo that makes it strange to walk in the hall. It’s the mask. No one can tell when you’re smiling.

I did have one session of hospital yoga, and it was nice to stretch and get moving. Obviously, we didn’t do anything to strenuous, but the instructor had me do some seated positions. For as long as I’m able, I’d like to continue with the bedside yoga program, as they call it.

Chemo. I started chemo on Saturday. I get a big bag of etoposide that the nurses change every 24 hours. It’s bubbly—I was calling it the “Champagne of chemo”—so it was causing air in the line and beeping pretty often. Every nurse has a trick to make it stop beeping, and the third nurse’s fix made it stop for good, so that’s good, considering I have another day and a half to go. Also, I found myself addressing my beeping pump and telling it to be quiet, so I named my pump Wilson after Tom Hanks’ volleyball companion in Castaway.

I’m also on cytoxan, which can damage your bladder if it sits around in there too long, so I’m on a lot of fluids as well. So far, they haven’t had to give me a diuretic and they keep saying, I’m “peeing like a champ.” It feels good to excel at something, even if it’s just because I’ve been drinking a lot of water.

So far, aside from my nagging indigestion, the chemo has been OK. The worst part is set for post-transplant, when all the side effects are supposed to hit me at once.

Chest catheter. It’s my last three weeks or so with my trusty chest catheter. It’s been so nice to give my poor, abused veins a rest.

I’ve been worried that my cats or a stranger would pull out my chest catheter somehow, but it turns out that I’m my own worst enemy. Now that I’m hooked up to my chemo, I’ve stepped on the lines a few times.

Also, though I love the convenience of electronics, the notion of charging them irrationally feels like a terrible inconvenience. And now that my computer needs to be plugged in almost all the time, it irks me. So you can imagine how I feel at having to essentially plug in myself—or at least this medication pump that I’m attached to. I’m getting used to it, but I long to be free.

Accommodations and décor. This is my first time on the bone marrow transplant floor. I have my own room, while I’m isolated from germs. There’s a chance I might get moved to another floor and a shared room when I’m starting to feel better.

My room is nice, with drawers for my stuff and a sleeper chair, in case my boyfriend wants to stay over. There’s a computer, a TV, a bed and a few chairs, as well as my own private bathroom. It’s not a bad place to call home for a month, considering the circumstances.

My view is of an adjacent wall. It’s the first thing I noticed when I walked in. It’s not as nice as my previous views of the Triborough Bridge, but I’m not sure if I want to put in for a room transfer just for the view on the other side of the building. I have a patch of sky, if I look up. I keep waffling back and forth, but I think I’m just going to stay put.

I arrived only with my clothes, computer and Kindle, as well as my cat blanket, a cat toiletry bag and a cat totem—all gifts. Since then, the cats have increased, and I now have a book of cat stickers, a drawing of one of my cats that someone sent and cat get-well and Easter cards.

Yesterday, my boyfriend brought me a digital picture frame loaded with photos. Sometimes, I can’t imagine a return to “normal” life, and sometimes I don’t dare, in case I’m disappointed. Yet looking at photos of family and friends and so many happy memories has been more therapeutic than I would have thought, and it reminds me of the good things to come.

Even more cats.

Cats.

cats

Even more cats!

 

 

More cats.

More cats.

Candy.

Candy.

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.

Lurking Deadlines

Today I wondered what it will be like when I don’t feel as if I’m up against absolute deadlines. These deadlines are, for the most part, self-imposed.

As I had one of my last dinners out—for the next four months, at least—with a friend last week, I realized I have had a “last night out” series of events, beginning a year ago, before the ABVD chemotherapy.

Since then I’ve had a string of last hurrahs—before Brentuximab in November, and then before my ICE treatments, when I worried that I wasn’t having as much fun as possible. Friends have gamely attended this series of lasts, right through last week’s meals out, even though I’m like that friend who keeps having going-away parties but never seems to move.

I feel as if I’ve been scrambling to wrap up freelance work projects for a long time—before the first round of ICE, the second round of ICE, before radiation and this hospital stay for the stem cell transplant. Though I have nothing pressing to do, I’m still trying to finish up a few things before the mind fog of chemo descends upon me this weekend.

And then I realized I also wouldn’t be able to update my blog, which I’ve been ignoring—so here I am. How could I feel busy when I’m technically supposed to be doing nothing?

Another deadline arrived this morning. Today is my first and last day to walk the halls. I was told on Monday that I had to stay in my room because of my neutrophil count, but today, the nurse and nurse practitioner agreed that I could take some laps around the floor.

By next Wednesday, I should be feeling temporarily terrible if everything’s on schedule. Though I’m not looking forward to it, it’s a relief. If I’m lucky, this will be one of the last hurdles to jump.

I finished one week of outpatient radiation and now I’m in the middle of my second week, which is Total Lymphoid Irradiation (TLI). On Saturday, I begin four to five days of chemotherapy, followed by a stem cell transplant. Then I feel terrible for seven to 10 days before I start to feel better.

Right now I’m waiting for my side effects to start. Truthfully, I’m hoping my nausea holds off at least through today, so I can enjoy the breakfast pizza and Mexican bean soup specials and dig in to some Easter candy a friend brought by yesterday.

So I see this weekend and next week as another deadline. I think I’m a little less tightly wound than I was before ICE.

These deadlines don’t loom so much as lurk, since I’m not sure exactly when I’ll start feeling nauseated or fatigued.

I realize all these “lasts,” are extremely temporary in the grand scheme of things. There are also post-transplant firsts on the horizon—and the accompanying celebrations—first walks around the neighborhood, first outings with friends, first dinners out, first workouts. There are more joyful firsts, I hope, just around the corner.

Good News, Unknown News

The good news is that I finally have my hospital admission date: April 13.

I suppose unknown news isn’t really news. The outcome is the same, and things are proceeding as planned. But after the MRI, the doctors still aren’t quite sure what’s lighting up on the PET scan. They think there’s a 75 percent chance it could be Hodgkin’s lymphoma, which is strange, because it’s not in my lymph nodes, but it my pancreas. The other 25 percent is a big question mark. Inflammation? It doesn’t appear to be pancreatic cancer or another pancreas issue, according to the MRI.

There was talk of doing an endoscopic ultrasound and biopsy this morning—in fact, I had one scheduled for next week. But after some thought, it was cancelled. The biopsy would sample only a very small part of the pancreas—possibly not enough to tell if Hodgkin’s lymphoma was present. It also might not rule out other possibilities enough that they could tell what exactly it is. And doing a more invasive surgery at this point doesn’t make sense.

The radiation doctor was going to radiate this area anyway, so everything is going to go as planned. Five days of outpatient radiation begins on April 7, and then the hospital stay and everything it entails begins the following week.

I’m disappointed that there’s still an unknown bit of possible cancerous something lurking as I go into transplant, but I’m also relieved that this doesn’t push back treatment too much. I want to get this over with. I am as impatient as this cancer is stubborn.

Photo note: I have no photo of my pancreas on hand, so here is a photo of my cats taking an IQ test.

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.

On Cleaning

I just spent a few hours cleaning. Mostly this was filing papers and dusting. With my bum phlebitis-inflamed arm and my chest catheter, I can’t do things like dust under the bed, or move things around so I can vacuum and mop.

I’ve had several last-cleaning-before-the-hospital-stay situations—before both rounds of augmented ICE, for instance. But this feels particularly final, since I’ll be away for my stem cell transplant and radiation for a month and I won’t be allowed to clean for three months. Specifically, I won’t be allowed to vacuum or clean the bathroom.

There’s a chance my hospital stay will be delayed a week or two. (The worst case scenario would be longer, if the PET scan still shows cancerous activity.) So I may be able to clean next weekend. Yippee.

People have asked why I don’t hire a cleaning person. I’ve suggested getting a cleaning person during my convalescence, but my boyfriend shot down that idea. Truthfully, I’m relieved.

I’m not comfortable hiring someone to clean for me. That’s not to say I’m against having things done for me. My boyfriend does most of the cooking, because I don’t have time. And he would do the driving when we had a car. I liked pretending that I was a fancy NYC person with a driver.

I love having my laundry done. I might live here forever specifically for that reason. When I heard that you could just take your laundry to the laundromat and it would be returned to you neatly folded and clean, I nearly wept for joy. It’s like being in college and going home for the weekend and having your mom do your laundry, without the guilt.

The thought of doing my own laundry again leaves me deeply depressed. It’s not just the laundromat, which is an inconvenience. When I had my own washer and dryer in Ohio, I still wasn’t big on doing laundry. Or doing laundry correctly, I’m told. I just put all my clothes in together, without sorting. My laundry all has something in common—it’s dirty. So in it goes, and out it comes, clean, if maybe grayer or smaller.

I was taught to read labels when buying things to avoid buying dry-clean-only items and things with complicated instructions. Sometimes I forget. With dry-clean-only items, I often leave them in a pile and then wear them again a few times, my own version of dry-cleaning, before actually taking them in to be cleaned professionally.

If I have my way, I will never do my own laundry again. But I’d probably hire an assassin before I hired a cleaning person.

Growing up, somewhere along the way, it was instilled in me that having a cleaning person is for lazy people. Frivolous people. People who can’t clean up after themselves.

I know this isn’t true. Friends who are highly respectable, responsible people have cleaning people or cleaning services. So I don’t judge others, but I would judge myself harshly on this point.

I’m not sure where I got this idea. I don’t think it was ever overtly stated. But it was implied.

My grandmother did all her own cleaning. I’m not sure how she would feel about my laundry situation, but I know she hated ironing, so I feel as if she’d approve of my current choices. (Ironing depressed her. I think it made her dwell on disappointments. I feel the same way about cleaning the bathtub. I can’t clean the tub without feeling angry and depressed, so I get it. We all have a household chore that gives us too much time to think and inevitably and inexplicably stirs up all of life’s disappointments.)

I think when the subject of someone with a cleaning person was brought up, there wasn’t quite an eye-roll. But it was said with a hint of disapproval and a slight pursing of the lips.

So, with my last bit of strength, I will be dusting or mopping, reluctantly and with an air of martyrdom and grim determination. Though now that I physically can’t do some chores, I will channel my energy into bugging my boyfriend. He might change his mind about hiring a cleaning person after all.

 

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!

Stem Cell Collection: 6 million

I now have more than 6 million stem cells ready for my transplant. It turns out my guess was pretty accurate on Monday—I had 3 million and change—and I had to go back Tuesday to have more stem cells collected.

So I had some grilled cheese and set off for Manhattan, but not without completely forgetting the Neupogen injections. I came home, took my shots and then rushed to the stem cell collection room. It was a full house, with all the beds taken, so I had to wait to get hooked up. Then my platelets were low, so I couldn’t get a heparin injection, which apparently moves things along. So this collection took a little more than five hours, and I was given heparin at the end.

I also got some yogurt to keep my calcium levels up, and the nurses shared some of their candy with me. It’s a pretty happy place, considering your blood is being drawn out, spun around and put back in for hours. The only painful part is waiting, and the nurses do their best to make that painless.

I plugged my laptop in and did some work, but I felt as if I was moving at a snail’s pace. A nurse explained that the Neopogen boosts white blood cell production, and the bone marrow is so focused on that that it lets other stuff slide — like platelets for clotting and red blood cells.

That explains why I’d been so sleepy. On Monday, I came home took a nap, and then went to bed early and slept for 10 hours. I woke up Tuesday refreshed but by hour three, I couldn’t work anymore and decided to read, and then I slept for at least an hour.

A social worker from the hospital also came by to see if I had any questions and to make sure I would have adequate care after the transplant. I was a little sleepy, so I feel as if I didn’t have any good questions. Also, my appointment list just had a name on Monday, and I didn’t check to see who I’d be seeing. So I’d gone to my dental appointment ready to discuss my feelings. (I know my regular dentist, so I guess I can discuss my concerns with her if I would like both a check-up and to talk about my well-being.) Most of my questions were answered by the online session last week with a transplant doctor and a volunteer who talked about going through an autologous stem cell transplant for Hodgkin’s lymphoma.

TMI alert: Whenever I blow my nose, my right nostril often produces blood. It’s happened after both ICE treatments and the doctors said since my platelets are low, I’m prone to bleeding. To add injury to this insult, while I was wiping up the dried blood from under my nose, it must have cut my skin, so I now have a very visible cut under my right nostril. It now beats my most stupid injury surpassing the time I chipped my tooth while drinking a fancy Bloody Mary. (Felled by an olive pit.)

I still have a giant, swollen monster arm. I’m worried that once my platelet counts go up, it might just burst open. I assume that’s never happened. In the meantime, I will continue to smell like menthol patches and not bend my arm.

phlebitis

Stem Cell Collection

I am in the second hour of my stem cell collection. Currently, a bag of my stem cells is filling up behind me. One lumen of my leukapheresis catheter is feeding blood to what appears to be some sort of Rube Goldberg machine, with a bunch of spinning dials, and the other is returning blood back to me.

They covered the lines for me with a blanket, because I’m a little squeamish. I accidentally took a look as the nurse drew a big vial of blood from my chest catheter and it really gave me the heebie-jeebies. Apparently, the blood is being taken out, spun around and then returned.

My stem cell bag is filling up, but I don’t know what 5 million stem cells look like. If I had to guess, like those jellybean contests at stores, I’d say I have about 3 million. We’ll see if I’m right. I have to come back every day until I reach 5 million. I’d like to be done soon, since I’m running out of places for the Neuopogen injections.

I’ve been here since a little after 8 am for a marathon of tests. They slated one after the other so I could get them out of the way before my stem cell collection at noon. Everything has gone smoothly so far, aside from my decision to take the train instead of taking a car. I thought I’d miss rush hour, but I forgot how crazy the 4, 5 and 6 trains are in the mornings.

I started with a pulmonary function test. I think this is my third or fourth one, so I’m an old pro. I wonder if my scores are worsening—not from potential lung damage, but because I haven’t been to Bikram yoga in a year, so I haven’t been doing any pranayama breathing. The test is a bit like that, without the head and arm motions. You blow into an apparatus as hard as you can and take a sharp inhale a few times, and there are a few other exercises where you completely empty and fill your lungs.

My finger also gets hooked up to a machine and I step up and down some stairs while it records my heart rate. Sometimes, I’m tempted to think of something that makes me angry to see if I can make my heart rate go up, but I never do.

Then I had an EKG. It’s the test, where they put those 3M poster-hanger things on you, followed by an echocardiogram. More breath-holding, this time with ultrasound goo and heart images.

After yesterday’s unsympathetic nurse, I finally got the reaction I wanted from the person who did my echocardiogram. “Phlebitis? Oh, I’m sorry,” she said. “That really hurts.”

Yes. Thank you. That’s all I wanted. Some sympathy and acknowledgement of pain.

My arm is even more swollen that yesterday. I have two giant, swollen bumps, one in the crook of my arm so I can’t bend it. My arm feels like it weighs 50 pounds. I usually use my other arm to move it around.

The good news is that the doctors had me pop by to take a look at it. The bad news is that they can’t do much. Since my platelets and counts are low, I can’t do blood thinners right now. (Alas! If I could celebrate St. Patrick’s Day, I could thin my blood on my own with some festive drinks!) In the meantime, I’m on antibiotics. Once my counts go up, they will consider the Lovenox again.

As for the painful bump on my belly, where we’ve been doing injections, it’s just a little bit of bleeding from the shots. It feels like a mini-phebitis. It hurts. Like a broken heart, it just needs time to heal. Sigh…

I also got a dressing change while I was there. It’s a piece of protective plastic around the chest catheter with a tape edge. The nurse has to write the date on it, and the nurse practitioner drew a shamrock on it, so I feel decidedly more festive.

The nurses at the stem cell collection room are decked out for St. Patrick’s Day. I think I have about 45 minutes left before I can go home. Since I usually spend my afternoons in bed with my laptop, not much is different aside from the big blood machine and the noticeable lack of cats.

I also had an appointment at the dental office here, so they can check to make sure I don’t have any tooth issues before my stem cell transplant and radiation. My teeth look good! I feel as if it’s the one area of me that’s not falling apart in some way.

On the way to the office, I got lost and spent some time wandering the back halls of this massive complex. When I found the elevators to leave, I realized I’d been steps from where I started, after a very long detour. I have no sense of direction, so this was not very much of a surprise.

In a few hours, I expect to get the call about my stem cell count. I hope it’s good news and that this big bag of stem cells hits the 5 million mark. I was worried I’d be a few short, but the nurse says if it’s close, it should be good enough.

We’re having pizza for dinner—just in case I need the calcium. I didn’t have lunch because I don’t want to have to get unhooked to use the restroom. I’m looking forward to sitting in front of the space heater with some food and cats.

I salute all those who have been going outside all winter. I’ve been outside a total of 10 or 15 minutes, and I can’t deal with one more second of winter. I’m ready to retreat to my hermitage until the weather improves.

Note: I feel conspicuous taking a photo here, so here is another photo of my cats.

Phlebitis?

Yesterday, I went out into the world—to dinner and to a tiki bar, where I could not, alas, have any delicious tiki drinks. But it was nice to be out in civilization for a bit. I laughed so much, my cheeks ached.

Today, my bones ache instead. I am angry and cranky. I have two raised, red bumps that look like blood clots.

Oh, I’m sorry: phlebitis. I have been corrected.

I called the doctor on call about the bumps to see if they wanted to schedule an ultrasound to confirm. He doesn’t think they’re clots and told me that he’d pass along the information to my regular doctor tomorrow.

I had to go in today to have my blood checked. The doctors don’t want my platelets to drop below 20, but today they were down from Friday’s 35 to 8, so I got a yellow bag full of platelets.

I wasn’t going to bring up my superficial clots to the nurse, but my boyfriend said I should. I asked her if the platelets would affect my clots. I wish I hadn’t. She asked me why I thought they were clots, and I said because they were exactly like the clots I had in my other arm. She asked me if I’d had an ultrasound. No. She shook her head at me. I showed my new painful, red, raised bumps to her, and my old clotted arm that still feels like I have straws embedded in my arm but is no longer swollen.

“That was phlebitis?” she asked.

Yes. I guess. All I know is that it made me miserable for weeks. I couldn’t move my arm. Sometimes, it felt like a tiny fire was inside. It hurt. A lot. Almost the time.

“It’s not the same thing as a clot,” she said.

That’s fine. Phebitis. I was being nice, despite my pain, and she went out of her way to try to make me feel stupid. I’m not sure what she perceived about my attitude. I has asked a simple question.

Still, my usual response would be to tell someone to phlebite me, but I don’t like to mess with people who have access to my bloodstream, even if they’re being condescending. That didn’t improve my mood. I feel like no one’s taking me seriously and that I’m being dismissed.

I’m not saying I know everything…or anything, for that matter. I’m saying that whatever happened to in my right arm that caused it to hurt and swell for weeks is happening in my other arm on my belly and I would prefer that it not.

I’d hoped my new platelets would make me happier, but I’m still a big jerk today. My boyfriend is out exchanging some Henley shirts for me, so I can wear them tomorrow for my stem cell collection. (Another alarming thing: one of my catheter lumens isn’t working. The nurse just said they “would do what they had to do” tomorrow and didn’t say any more.)

I am trying to get nicer in the meantime. I am wearing some pain patches. I’ve rubbed the cat’s soft belly. I might nap.

I am not taking my oxycodone. I would sell it for extra cash if I had no scruples, but I’ve recently seen a lot of news pieces on the heroin epidemic, so I’m not going to turn into a small-time Walter White. I’m also terrified to take it now, on top of my usual wariness of pain meds.

My big comfort today is the cheesefest that’s going to occur, since I have to eat a lot of dairy before my stem cell collection. For lunch, I had saag paneer, with cheese and spinach, both high calcium. For dinner, we’re having an assortment of cheeses. Cheese, at least, makes me happy.

Today’s just one of those bad days, when I want this to be over. Naptime, then hopefully I awake a new woman.