Stem Cell Transplant Soundtrack

Now that I’m home, I can work on important things like my Stem Cell Transplant Soundtrack. I’ve been thinking of songs through this whole process, from radiation through chemo and recovery to homecoming. Below is my list.

“Radiation Vibe” Fountains of Wayne

“Radioactive” the Firm

“Fade Away and Radiate” Blondie. This was the only radiation song I could think of initially. Imagine Dragons isn’t on here because that song is terrible.

“Poison” Alice Cooper. You’ll notice a lot of hair metal in this list. Why? Because hair metal is awesome. If Nirvana hadn’t happened, I would have happily spent my high school years as a metal girl. But grunge hit, and I couldn’t find my pointy metal boots at the mall anymore, so I had to buy combat boots and become goth. Actually, in latter high school, I was mostly goth, but since it was the ’90s, there was a lot of general alternative going on—think Angela Chase’s confused wardrobe in My So-Called Life. I’d wear flannels on top of my mostly goth outfit. Anyway, my point is, I would have stayed metal if I could have.

“Shot of Poison” Lita Ford. I love Joan Jett, but I think Lita Ford doesn’t get enough credit for being in the Runaways and just generally being a pioneering female guitarist. I’ve always been a little bit Team Lita. I think that because she dressed a little provocatively, she wasn’t taken seriously. (This video is an example.) I like that she Saran Wrapped her man in this video to keep him fresh. This video also made me remember that when I was a metal girl, I wore giant crosses, like Lita here, but much more clothing.

“Don’t Drink Poison” Le Tigre. This song by feminist trio Le Tigre is to make up for the writhing of Lita Ford.

“Church of the Poison Mind” Culture Club. I’ll never forget the first time I saw Boy George. It was the early ’80s, on a morning talk show, like Good Morning America, which my grandpa was watching while my mom and grandma got ready for church. I was probably about four or five. When Boy George’s image appeared with his name, I short-circuited. I couldn’t reconcile his long hair and makeup with his name. I stood there, transfixed in front of the TV, watching the pretty man. That I spent so much time later listening to androgynous musicians and men in makeup isn’t lost on me.

“Bad Blood” Ministry

“Love Like Blood” Killing Joke

“Bloodletting” Concrete Blonde. These last two songs are nods to feeling (and looking) like a baby Nosferatu while my mouth healed.

“Fever” Madonna

“Taste the Pain” Red Hot Chili Peppers

“Cure For Pain” Morphine. Morphine was a great band, and this song is very appropriate for the week I spent in a haze.

“Sister Morphine” the Rolling Stones

“I Want a New Drug” Huey Lewis & the News

“I Wanna Be Sedated” the Ramones. I am so glad I didn’t go to senior prom and saw the Ramones instead. I pretty much was bored at every single high school dance I ever attended, but I always ended up getting roped into going. At the time, I was still plagued by the thought I “should” go to my last prom, but I didn’t have anyone to go with, whereas I had three people to see the Ramones with me. If I would have gone to prom instead of the show, I would have regretted it.

“Comfortably Numb” Pink Floyd. I’m not big on Pink Floyd, but this is what morphine is like.

“Painkiller” Judas Priest

“Movin’ On Up” Primal Scream. Once I started feeling better, this is the song that immediately came to mind. Bobby Gillespie’s shiny shirt and the chorus’ bangs are very ’90s.

“Sea Sick” Love Is All. This is for when I hit my wall of not being able to be in the hospital.

“Things Can Only Get Better” Howard Jones

“Home” Iggy Pop

“Josie” Steely Dan. I nearly forgot this extremely appropriate one, but a friend posted it to my Facebook wall. I collect songs about my name, so it’s the reason I have a Steely Dan album and a Blink 182 album.

“Coming Home” Cinderella

“Home Sweet Home” Mötley Crüe

Pushing On

I need to change my attitude if I’m going to last here until Monday. I’ve realized the last few days have loomed longer than the past several weeks. I have gotten back some of my inner peace, I suppose.

I’m a teary mess lately. Who installed these feelings? Today, I teared up thinking about last Mother’s Day, when my mom visited and accompanied me to an ABVD chemo treatment. We also went to brunch and the botanic garden. That seems so far away after this year’s journey.

When someone today asked if I was a mom, it reminded me that I might never be, and that also brought on the waterworks.

Last night’s episode of Star Trek: The Next Generation also brought on tears. It reminded me of my mom watching reruns and me going off to meet high school friends. Simpler times. What is wrong with me? Nevertheless, I called my mom to tell her I miss her.

So nothing is safe from sentimentality. I sit here now, greased up like an aging, overdramatic starlet in an old film. The hospital air is so dry, I have to put on a healthy dose of Eucerin cream on my face and scalp.

I tried sitting by the window now that the sunshine is back. What’s amazing about New York City, a metropolis of 8 million people, is that you can have a sweeping view of the city and not see a soul. I know First Avenue is bustling, yet I can’t see any actual people, just buildings.

So far, I’ve seen two people—a woman and a child. I’m so thirsty for human goings-on that they scurried out of view before I even had a chance to finish wondering about them. Is he excited for Mother’s Day? Did he make her something or buy her something? Does she know what it is? Will she have to act surprised? Where were they going?

But they were out of sight quickly, leaving me alone to gaze upon my empty-looking metropolis.

Looking to my left, there’s my world—my medication pump, my hospital bed and a window to the hall, where I see doctors and nurses pass, as well as other patients pushing their own pumps, often supported by relatives. We push on.

Finding Strength

As I may have mentioned, I am beyond antsy at this point. The latest is that I’ll be here through the weekend. Maybe I’ll be released on Sunday at the earliest, but it’s not likely.

Much thanks to those who have agreed to visit and to try to keep me sane, as I climb the walls.

Today, I may venture to the patient lounge on the 15th floor just to get out of my room and see what’s happening. Last night, someone knocked on my door and offered a guitarist to serenade me. It’s a cool idea, but I’m weird about musicians/performers being able to see me, so I deferred to another time.

Thanks, too, to all of those who have offered me words of strength—and encouraging words about my own strength.

The thing is, I never wanted to be strong. Often, I worried I was weak. I hoped I would stay that way, untested by life.

When I looked at my somewhat charmed life, I feared I skipped a step. Had I done something to deserve these amazing friends? This life, rich in experiences? A career I loved? The love of my life? Did I need to suffer first? Work harder?

I sometimes worried that I hadn’t earned what I had. Now I know that’s not true. I worked for what I had and I definitely deserve the company of the great people I’ve surrounded myself with.

I didn’t need cancer to see that. I didn’t need cancer to make me stronger, though it has. Sometimes, something terrible happens, and we don’t know why. This was one of those things. I hope to be on the other side soon.

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 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.

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.

Ultrasound and My First MRI

Today I had an ultrasound of my legs to check for more blood clots that could potentially lead to another pulmonary embolism, and I had an MRI, which wasn’t as bad as I’d thought

I get the results of the latter tomorrow. My hope is that it shows no more lymphoma and that the PET scan keeps lighting up because, instead of a glowing heart like E.T. the Extra-Terrestrial, I have a glowing pancreas.

My ultrasound didn’t show up any more blood clots that could travel to my lungs. I’m still concerned that my blood seems to clot so easily, even when my platelets were low. I’ll be off the blood thinner for a little while in the hospital, when my platelets drop post-chemo. I irrationally worry that my blood will just all clot up and stop flowing during this time.

In addition to the good news of no clots, I also got some book recommendations from the person who administered the ultrasound. We got to talking about books, and she wrote them down for me so I can put them on my Kindle for my long hospital stay.

Then I went to have an MRI. I’ve heard that they’re boring and unpleasant, as well as claustrophobia-inducing. It wasn’t nearly as bad as I thought it would be. In fact, I thought it was a little bit better than a PET scan, because my arms were in a less awkward position above my head. Also, I always almost fall asleep during PET scans but not quite and end up groggy.

There’s no chance of that with an MRI. That’s because an MRI is loud. That kind of surprised me.

After I filled out the forms about metals in the body and put on a robe, I was led to the MRI room. When I put the key to my locker, where I’d stashed my belongings, on a counter in the room, I thought I saw candy on the counter.

I haven’t worn my usual gas permeable lenses since this summer’s eye infection, and I’ve been wearing disposable lenses. They’re weighted for my astigmatism, but I can’t see as well, so I don’t know what’s going on a lot of the time. It keeps things interesting.

After I was strapped in, one of the technicians approached with the colorful-looking candy wrapper thing. Irrationally, I thought I was going to get some sort of special candy. Maybe for MRIs you get candy instead of that red drink for PET scans? They were earplugs.

I was a little surprised to see race car stickers on the outside of the machine. Sometimes, the machines are adorned with something to make you feel better. My last PET scan at the Evelyn H. Lauder Breast Center was in a forest-themed room. There’s a mural on the ceiling so when you’re not all the way in the machine, it’s as if you’re in a grove of trees. A few fallen leaf tiles on the floor complete the effect. It’s a nice touch.(For some reason, the last time I was there, it was freezing, so I kept expecting to see that the ceiling trees had lost all their leaves and had icicles hanging from the branches.)

Once I was inside the machine, there were more stickers. I’m not sure if I was in pediatric machine (for short people?) or not, but I liked the array of birds, monkeys and other animals to look at. At my eye level were two pink elephants, a pair of shiny giraffes and a zebra. I decided that, based on his sticker companions, the remaining animal sticker was a crocodile, not an alligator.

Then the noise began and I understood the earplugs. It’s not deafening by any means, but it’s a little like being at a construction site. A friend said his MRI was like listening to Nitzer Ebb, and now I see what he means. With the noises and the animal stickers, it was like being at a modern art installation that I didn’t understand. If done properly, people might line up for hours for this experience—especially when the ’80s video game noises began and my little machine bed began to vibrate, like I was under attack. It was like being in a Galaga ship.

When there was a brand-new noise, I could guess that a part when I had to hold my breath was coming up. Someone would announce that I should hold my breath and then there would be a flurry of noises. When those stopped, the voice would come back to tell me to breathe.

After the first round, they put contrast media into my IV and then I pretty much went through the same routine again. Between the stickers, the noises and holding my breath, there was enough to distract me, so it didn’t feel that long.

I get the results tomorrow morning, and then I have a radiation oncology appointment in the afternoon. Fingers crossed for good news.