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.

Waiting

I’ve reached the end of my patience, just when I need it the most. I’ve been here 27 days.

It’s no fault of the hospital, but I’m just ready to go. I felt patient and Zen as a Buddha when the doctors told me I’d be going home soon on Monday and Tuesday.

Today, I’m ready to climb the walls. Or, more specifically, the wall that I seem to have hit. I’m tired. I feel well enough to be bored, but lack the energy to do most things. TV bores me, while reading requires a little too much mental energy. I yawn frequently, but it hurts my throat. I look like I’m crying, because my eyes water so much from being tired. I can’t believe how exhausted I am without the morphine.

Sometimes I do cry, because I’m just tired of being sick. Everything smells hospital-tinged. Then I feel a pang of guilt for those who have been here longer, for those who suffer. For those who check in and never check out.

I estimate I will be here another five to seven days. It’s not an eternity, even in hospital time.

Tick Tock

My release is soon. According to my doctors, I could get out as soon as this week. Here’s what has to happen:

1. My counts have to be good. So far, so good.

2. I have to be able to eat 1,000 calories per day. Right now, I’m still struggling with broth and pudding. Today, perhaps I try some mashed potatoes. Tomorrow, if it’s rainy, I plan up on curling up with Game of Thrones and a Cranky Monkey smoothie.

3. I have to get rid of my IV medication. This is good, because I’m not on very much medication at all, considering. I’m no longer receiving morphine, but I still have the pain pump, so the morphine’s under my control. The anti-nausea drugs, Acyclovir, vitamins and other goodies I’ll eventually have to take by mouth, much more doable now that my throat is feeling better.

4. I have to drink a liter of water a day. Pre-transplant, this wasn’t a problem, so let’s see if I can get there again, with my sore esophagus.

Fingers crossed. I can’t simply chug some water and eat a bunch of food and check myself out. Hopefully, I feel well enough in the upcoming days to meet my goals and get out of here! After 26 days, I’m ready!

On Blogging

My invitation from The Big C and Me to join the World Blogging Tour last week got me thinking about why I write these blogs. At first, it was a way to process what was happening with my Hodgkin’s lymphoma, and later, once I decided to share that I had cancer in September 2013, it was a way to keep people posted on what was going on. But I’ve also wanted it to be a place where those going through ABVD chemotherapy or a stem cell transplant could read about my experience so they had an idea of what to expect.

I found a few blogs about Hodgkin’s lymphoma and refractory Hodgkin’s lymphoma to be helpful, so I wanted to put my own info out there, although each patient has his or her own experience. Some people can eat all the way through the transplant, some have throat pain (like me), and others have nausea. Some people experience very few side effects, while other people have many. Many people go into remission after ABVD, while some refractory or relapsed cases need additional trials, chemo and radiation.

I never wanted to become a cancer blogger, because I never wanted cancer. Once I started writing, though, it became extremely therapeutic. When I talk about pain or side effects, I hope it doesn’t come across as self-indulgent or woe-is-me. It’s just to let people know what happened and what they might expect. I’m not one to pore over every blog out there either, because at some point, I’d freak myself out.

I suppose my message is: If I can to this, so can you. I have a low tolerance for pain. I’m squeamish. I don’t like doing things I don’t want to do.

My experience, overall, has been a good one, despite the disappointments of having refractory Hodgkin’s lymphoma and the year-plus of treatments.

Here’s a little update on what’s going on with me, more than a week after my transplant.

My eyelashes are gone. They just disappeared one day. In high school, this guy I knew plucked out all his eyelashes one day because he was bored, he told me, as we stood in line for gym attendance. His eventually grew back. I have a few left, and they keep depositing themselves into my eyes.

My eyebrows also are mostly gone. I feel as if I spend more time, money and thought grooming my brows than my hair (back when I had hair). It’s almost a relief. Fine, take a break, brows. You’ve earned it. Come back when you’re rested, and we will resume our struggle with how much real estate on my face you’re allowed. Spoiler alert: Not as much as you seem to think. (I still have a few mustache hairs in place, though. Those can go away forever if they’d like.)

I am nearly sipping. I took about seven sips of tea last night, and it felt momentous until I looked at my nearly full cup. Oh, well. Small steps. The doctors seemed impressed after looking into my mouth, which has been healing, but they also don’t want me to force myself to eat or drink. Taking a few tiny pills today really hurt. Today, more tea; tomorrow, broth.

My throat's enemy: The tiny pill.

My throat’s enemy: The tiny pill.

I had a bit more tea today, but I forgot that I need to focus all my attention on swallowing liquids while my esophagus heals. Otherwise, disaster ensues. Luckily, I didn’t choke too much on my tea.

I’m starting to get hungry again. They really go all out here to try to tempt you to eat, so it’s no fault of the menu. I have in my possession the regular menu, the weekly specials, the children’s menu (with a Thanksgiving Day sandwich) and a purée menu (where everything is puréed, even the lasagna that I plan on ordering when I am well enough). I just need to get rid of this pain.

I am awake for hours at a time. I still nod off a lot—while I’m typing an email or getting my vitals taken. But I can stay awake for awhile without napping again. But on that note … I can tell I’m falling asleep now if I close my eyes for more than a second or two.

Corner Turned

I’ve heard from doctors and several people who have been through autologous stem cell transplants that once your cells engraft, you immediately start to feel better, as if someone’s flipped a switch.

At 5 am yesterday morning, I woke up and knew I was on my way to getting better. Granted, I woke up in pain. I want to tell someone, but my boyfriend is squeamish. So, if you get the heebie-jeebies, skip the next two paragraphs.

I woke up because my throat was burning. I coughed up the usual assortment of whatevers (stop me if I’m getting too technical), as well as something new and white. The next time I saw the nurse, I asked him about it. “Did you save it for me?” he asked.

Of course I had. After he examined it, he asked me if my throat hurt, and when I replied that it did, he simply said, “It’s just the lining of your esophagus.” That’s kind of what I was worried about, but he’d been so calm about this fact, that I decided I shouldn’t be concerned. This whole time, everyone’s been describing the radiation as causing an internal sunburn, so it makes sense that the healing process involves the old, burned lining to slough off and then come back fresh.

My stomach has been making odd noises throughout this whole experience, especially during this week of not eating. One day it sounded like a grumpy tiki god or a mummy rising from the dead—a low rumble of discontent. But yesterday it started a new strategy and sounded just like a mewling, starving kitten. OK, I get it. We’ll try to have some tea today. But I can’t promise any solids.

Yesterday’s nurse just came in to adjust my beeping machine and he asked about my throat. I feel so much better. He said he could tell just because I seemed more comfortable. The throat/not swallowing has been the worst side effect for me—not bad, in the grand scheme of things. The side effects they can’t eliminate, they try to control the best they can. It’s taken a lot of morphine, magic mouthwash, Biotene and acid reflux medication to get me through this mucositis and burning from the radiation.

So far today, I’ve managed two sips of water. And I took the three sips of Carafate without getting nauseated. It was hard for me to take the drug to stop my upset stomach because I couldn’t swallow even the little drops of pink liquid. So my throat and stomach reached an impasse. Even now, as I celebrate my earlier victory of Carafate, a new one has appeared to taunt me. I could get down only one sip this time. Little victories and losses.

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.

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.

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