Morphine and Ice Cream

On Friday, I received my morphine pain pump  to alleviate the pain in my mouth and esophagus. I was also planning to eat soothing ice cream for most of my meals that weekend. I was excited about my diet of morphine and ice cream. I’ve read my share of rock biographies, and it seems like something a washed out rock star would do on one of his/her last binges. With several hangers-on and groupies, he would hole up in a seedy hotel, living on morphine and room service ice cream.

Alas, my plan never came to fruition. I do have my morphine pump by my side, but I haven’t been able to eat since Friday. And I had to leave my beloved room on floor eight for a smaller room on floor 14.

Friday night, the doctors had done an EKG, because my heart rate was going too fast for their liking. A little after midnight, they decided they wanted to monitor my heart, which decided to embark on its hijinx as I was yearning for sleep.

I didn’t take the heart monitoring as such bad news as the revelation they would have to move me to another floor. I must have looked like I was going to put up a fuss, because the nurses said it would probably be only for a few days, then I could return to eight.

I was upset that I would have to move and pack up in the middle of the night, so that did very little good for my heart rate. I packed quickly so I could catch a little sleep while I waited. When I woke up, I had a fever. So there were cultures and vials and tests. I slept through most of these before I was wheeled up to my new room. It’s a smaller, with space for only a bed, nightstand, rolling food table and a very skinny closet where I can put one computer bag. There are also two chairs that don’t pull out to sleep.

I had my boyfriend take home almost everything, aside my clothes, which don’t fit in the three drawers that I have. My view is a few buildings, but I miss my old room with its nice built-in cupboards, shelves and cabinetry.

The nurses could tell I was upset—especially after yesterday, when they told me I’d probably have to stay here. My fevers keep coming back. They assured me that I’d still be getting the best care, and I told them that that’s not what I was worried about—I just liked my old room a lot better. I know it’s a weird thing to feel upset about, but this room feels like hospital room. It makes me a little sad, despite the extra sunshine. I feel less motivated to go and sit in my chair to avoid pneumonia. I miss my little desk area and routine for my home away from home. Begrudgingly,  I’m starting to like my new room, and its improved view.

I’ve just been sleeping since I moved anyway. I slept through all of Saturday, with my boyfriend coming in to visit during the evening. I did the same through most of Sunday, though I managed to get the gist of The Amazing Race and Mad Men.

I have very clear mucus that plagues me and wakes me up in the middle of the night when I need to cough some of it out. I am like an infant—when people wake me up to talk to me or check my vitals, I helplessly blow big mucus bubbles at them and smack my lips up and down before I try to speak.

I just received a visit from the dietitian, who left me a pediatric smoothie menu, a low microbial pediatric menu and a purée menu. I’m still very afraid to eat, but tomorrow I might take the plunge and order a smoothie and begin my infant diet.

Well, I’ve fallen asleep several times writing these last few sentences and I think I witnessed the latch on my closet go up and down by itself, so it’s time to sleep.

Blood and Platelet Drive

A volunteer stopped by my room today to see if I’d be interested in having a blood and platelet drive. I know some of you have asked about donating blood and platelets—and some of you donate to Memorial Sloan-Kettering Cancer Center on a regular basis—so I signed up.

There’s no pressure. I think I just have to collect some emails, so please let me know if you specifically want to be listed—or if you don’t want to be listed. It just seems like a nice way to give back, since I’ve been receiving transfusions of blood and platelets during my treatment here. So far, I’ve been through a bag of blood after my ICE treatment, and several bags of platelets to replenish my supply after this last round of high-dose chemo.

It’s open to anyone ages 17–75. For more information, visit the MSKCC site. The blood donor room is located at the Schwartz building lobby at 1250 First Ave., and it’s open Fri–Sun from 8:30 am–3 pm, and Tue–Thu from 8:30 am–7 pm. Appointments are required. I should be sending around more info about how to donate soon.

Day One

If my transplant day was Day Zero, then it’s Day One today.  My transplant yesterday was, as predicted, uneventful—a good thing. Mostly, I slept yesterday.

In the morning, after a shower and breakfast, I was given the Benadryl and Ativan through my IV, so I immediately felt warm and sleepy. I managed to have a conversation with my boyfriend and the social worker before the doctors and nurses came in to do the procedure.

I was hooked up to oxygen for an extra boost, and one of the nurse practitioners injected my stem cells, vial by vial, into my chest catheter. Meanwhile, a nurse held fresh lemons under my nose and squeezed them. This is to combat the smell of the preservatives used for the stem cells. The lemons, combined with the red color of the stem cell vials, made me think about Bloody Marys.

I was warned that the side effect of the preservatives would be a tickle in the throat, and that was the worst part. It’s a persistent, annoying tickle, but I didn’t experience much nausea. Mostly, I felt weird and uncomfortable and wanted it to be over, even though the procedure was mercifully short. I now see the wisdom of the Ativan, as I recognized my old pre-panic feelings roiling beneath the surface.

Overall, it went by very quickly and as pleasantly as possible, despite the unpleasant throat tickle that made me cough. I had four vials overall of six million cells. I also was battling with extreme sleepiness, so I was torn between wanting to pass out and needing to get my mind off my panic by talking to the people who were trying to engage my attention with talk of cats and the weirdness that is the Ohio State-Michigan rivalry.

After the transplant, I slept most of the day, waking up only briefly when someone would come in to do something to my IV pump or check my vitals. Around 5, I woke up to a package that contained a plush Grumpy Cat, a big hit today with the doctors. I catch at least one person per day examining my plush narwhal.

narwhal

Today, I’m dealing with just a few side effects of the radiation and chemotherapy. The worst part is still the violence going on in my esophagus and the painful burps, as well as a slight burning, but I was told that’s expected. I’m taking a lot of things for indigestion, so I think everything that can be done to ease the effects is in place, but it’s the mechanics of the indigestion that I can still feel. My throat has started to hurt, and my mouth also hurts, though the sores haven’t happened yet.

At night, with not much outside stimulation, my dreams are strange, pulling from random bits of subconscious. I often wake up in the middle of the night, feeling as if I have something important to do, but I don’t, so I just get up and use the Biotene mouthwash.

For the mouth pain, I was given a weird clear gel that tasted like a black jellybean, but not as sweet, to numb my mouth a bit. And I’m supposed to get a pain pump in the coming days. I feel constantly thirsty. Most of my medications have been switched to intravenous ones so I don’t have to swallow pills.

I’m still on the Lovenox blood thinners for my pulmonary embolism, but I’m also receiving platelets as a precaution to avoid bleeding in the lungs. I’ve been having the nurses give me the Lovenox in the arms, since I’ll have about four months of blood thinners left when I get out of here, and my poor belly is already so bruised.

I’m warned that I might not eat for awhile, but I expect to try to eat for as long as I can. Today, I overcame my throat discomfort to eat some Nutella crepes. I’ve been sticking to soups and soft foods when I can, so unless/until the nausea sets in, or the mouth sores get to be too much, I think I’ll be eating. Even if it’s an ice cream dinner.

Other than that, I’m just trying to figure out how to relax. I signed off of work projects for a while, and I’m a little at a loss for what to do with myself. I’d like to read, and I have a bunch of great books lined up on my Kindle. I have a season of Game of Thrones and Boardwalk Empire to watch. I just feel weird watching TV in the middle of the day. Maybe if it were gray and rainy out, I’d feel better about it.  I have a cat puzzle. I still have scarves to make and yarn to use up.

Now that I finally have time, I’m at a loss for what to do with it.

Blog Tour: My Answers

Thanks to Renn of The Big C and Me for choosing me to pass the baton on the blog tour “to reveal the essence of how and when we write.” I’m honored that she chose me to participate!

I have to confess that I haven’t been involved in the blogging community much. Aside from reading Renn’s posts and the occasional cancer blog post to give me a little bit more insight into what to expect, I feel a little out of the loop. I’m more of a blogging voyeur, peering in to others’ blogs through my screen.

The exception was in November, when I had the chance to attend a Fall Writing Festival put on by Memorial Sloan-Kettering Cancer Center’s Visible Ink program. I had the opportunity to hear panels of writers, take part in an auditorium-wide story collaboration and meet other cancer patients and survivors who used a wide range of writing. It was inspiring to see how many people had used so many different mediums, from poetry to fiction, as a therapeutic writing mechanism.

Without further ado, here are the answers to the blog tour questions:

1. What am I working on?

Right now, I’m mostly working on getting better and finally kicking this refractory Hodgkin’s lymphoma to the curb. After six months of ABVD chemotherapy, three months of Brentuximab vedotin, two rounds of high-dose ICE chemo, two weeks of radiation and four to five days of high-dose chemo, tomorrow is the last step in this round of the process. I get six million of my collected stem cells reinfused tomorrow and hopefully start recovery. I still have several weeks left in the hospital. I won’t know if I’m in remission until August or so.

In the meantime, I’m updating this blog and documenting this journey. When I created this blog, I had no idea that the treatment would be quite this long. Everyone says Hodgkin’s lymphoma is “the best cancer,” and so it’s been a bit discouraging to constantly get scans back and hear that it’s refractory and particularly stubborn about going away. (Or not going away, as the case has been.)

At the outset, I had an idea that I might put together a book. As a professional writer, though, I’m not sure that I have a book in me. We’ll see. I think it depends on how I feel when this is done. This blog has been so therapeutic for me in getting my thoughts down and processing what I need to think about.

I’ve been so focused on just putting my head down and getting through this that I think I’ll need to take some time to process what I’ve learned along the way. Sometimes, I wonder if I’ve learned anything at all. Will I have more that I need to say? I’m just going to see where this takes me.

When I began the blog, I’d also just lost my full-time magazine gig and was completely panicked and adrift. With the treatments, my uncertain schedule and my limitations (from immunity to hair loss), I’ve been unsure about going back to work. Right now, I’m freelancing and enjoying the opportunity to contribute to different publications and media outlets.

But the main order of business for the next three months is to get my strength back up!

2. How does my work differ from others in its genre?

Well, it’s mine, I guess. Blogs are very personal-yet-public things. I think a lot of people start cancer blogs as a way to keep friends and family up-to-date on goings on. But I didn’t start out that way. I started the blog, and then revealed that I had one over a period of time to friends and family. I wasn’t sure how comfortable I was putting my thoughts out there for people I know to read.

That sounds strange, but since I write for a living, I’m more comfortable having strangers read what I write—and rarely is it as personal as what I’ve put in my blog. So putting the blog out there for me among people I know was kind of a big deal.

When I set out to write my blog, I not only wanted to share my personal experiences, but I also wanted the posts to be somewhat informative as well, so others going through similar treatments or situations would have an idea of what’s in store. I looked at a few blogs that I found helpful, including Running from Dr. Hodgkin’s Disease. I’m not sure that that’s so different, as many of the blogs I’ve come across also want to let those who have been diagnosed with cancer that they’re not alone.

3. Why do I write what I do?

Blogging seemed like the natural thing to do. Almost every hobby I have turns into writing in the end. When I belonged to a local CSA, I enjoyed writing about cooking for the CSA website way more than cooking. I’m the blogger for my community garden. So writing about cancer also seemed to make sense.

Sometimes, writing is the only way I can make sense of things. Years ago, I suffered from panic disorder, and I maintain to this day that writing an article about it really helped me get through it.

Mostly, I write to find an outlet for my hopes and fears about this cancer—as well as to share my thoughts and observations that are probably mostly amusing only to me.  If I didn’t write this down, it would just stay in my head with all the other weird stuff that’s floating around in there. In the interest of my well-being, I decided I better find a way to pour some of it out.

4. How does my writing process work?

For the blogging, I don’t really have a writing process. I just write, look it over and make some edits, then post. Sometimes, I have an idea, and I’ll start writing a post and go back to it later, but I often just sit down and write a post from start to finish. Or if I’ve been neglectful of giving an update, I’ll have to break it down into pieces so people can see some bullet points.

I have much more of a process for writing stories and articles, but my hours of fretting over certain words or the way a story is flowing isn’t a very interesting topic. This stuff haunts my dreams, though—I’ll wake up from a deep sleep thinking that I finally came up with a perfect headline or found the right angle for a story.

I’ve always thought of a writing process as more of a creative endeavor. In a few job interviews, I’ve been asked questions about how I edit, and it’s hard for me to describe. I just mess with it until it reads the way I want. That’s never the answer they’re looking for. I hope I’ve done a better job with my four blog tour answers!

I feel as if I am going to drop this baton. Any other bloggers out there want to take it from me and up for the four questions?

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.

Things to Look Forward To

I don’t mean to brag, but I’m developing a reputation on this floor as a cat lady with an impressive urine output.

Does this not earn me bragging rights? Keep in mind I haven’t been interacting with people much lately.

The doctor this morning asked me what was new in the cat world and seemed impressed or disturbed by the Easter card displayed with a cat dressed as a rabbit. Someone just now dropped by a cat calendar for the doctors to see tomorrow on their rounds, and a cat puzzle and book arrived in the mail.

Once again, I was complimented on how much I’m peeing, so I don’t need any diuretics to flush out the Cytoxan, which can damage the bladder and the kidneys if it sits too long in your system. Apparently, I may have set some sort of pee record. Something else to put on my resume and those job applications, when they ask you an interesting fact about yourself in 140 characters or less: Current record holder of urine output on the bone marrow transplant floor.

Despite my increasingly feral nature brought on my isolation, visitors and the digital picture frame my boyfriend filled up for me reminded me of the outside world and all the things I plan to do.

The thing is: I’m afraid to make plans. I don’t want to jinx myself. My PET scan after the transplant will probably be in August, and so I’m not making specific plans quite yet. One of my friends recently declared she’s determined to have a blast this summer, so we just have to figure out what that entails. But here are some things I have to look forward to.

New Couch
A new couch arrived in my apartment last week. So far, it’s met the cats’ approval.

photo (11)

 

 

 

 

 

 

 

Visitors
My boyfriend’s parents are visiting next week, though they’ll have to see me here, in my hospital room. But I’m talking beyond hospital drop-bys. The new couch is a sleeper couch, so once I’m allowed to be around people on a more regular basis, I expect to have some visitors. One of my friends might come out in August for a concert and a beach trip.

beach

 

 

 

 

 

 

 

Travel
From what I remember—and I could be wrong—I’m not allowed to travel for three months, no air travel for six months, no international travel for a year, and no third-world countries for two years. I’m not going to make any definite travel plans, but there’s talk of Montreal by train in the fall, and Ohio in October. When I’m cleared for international travel again, I want to see my friends in Dublin, Copenhagen and Prague, with some side trips, but I’m getting way ahead of myself.

copenhagen

 

 

 

 

 

 

 

Gardening
This is something else I have to check on, but I think I’ll be allowed to garden, so long as I’m not working with manure. If I can’t spend as much time working in the community garden, maybe I’ll actually read and relax. It’s something I always say I’ll do, but the sight of an errant weed or plants growing in between the brick pathways makes me deviate from my intended downtime.

alium

 

 

 

 

 

 

 

 

 

Concerts
Since I’m supposed to avoid crowds for the first three months of my recovery period, I’m probably going to miss some shows I’d planned on going to this summer—including Devo, Morrissey and Nick Cave. But this fall, I have tickets to see Front 242 and Echo and the Bunnymen.

Simple Minds

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.