Time Is Poetry

While I managed to accomplish a few things this year, 2017 feels like a lost year to me. I will try to focus on and remember those accomplishments and I know full well there was a good reason why more didn't get done, but I do not want 2018 to be a repeat. I am still dealing with the health issues that sidelined me for most of the year. I need to accept that, but also learn to live some kind of normal life despite them. I have huge fears, but I also have friends and family to back me down off the ledge.

January through March of 2017 saw the Women's March on Washington, a short, cheap, crazy trip to Amsterdam, and my first big-girl work trip to New Orleans. All were pretty wild successes and I was really happy that I had done so much traveling (for me) so early in the year. I had really hoped to keep up that momentum. At work, my boss had just accepted a higher position within the company and we were in search of a new manager for my group. In the meantime, I had planned to really step up and rally the team. I had hoped that the lack of a direct manager would not delay the achievement of some of our goals.

But in April, I was completely blindsided by a flare up of my Lupus. Diagnosed in 2001 after a six-day hospitalization, I have been lucky enough to be healthy ever since my initial illness. Throughout 2001 - 2004, I received cytoxan treatments (first six months) and was prescribed a relatively insane amount of drugs (for me, up to that point, at 13 years old). The illness and the treatment impacted me physically and psychologically at the time. I'd lost weight while I was sick and gained it back (and more) once on treatment. Prednisone is both a blessing and a curse. While I am pale and never went out in the sun much anyway, I had to be especially careful to avoid the sun now. I was embarrassed and avoided any kind of social engagement that required being outside. I hid from cameras as much as I could. I felt diseased at first. I felt dirty, as if I had somehow brought this on myself. I tried not to talk about it much. I tried not to use it as an excuse. I survived high school, more or less, under the radar.

By 2004, I was down to just essential medications and - for the most part - life went back to normal. I still went to specialists every few months, but the Lupus was not a part of myself that I thought about every day. I learned to wear a little bit of make up. I bought some new, more mature clothes. I lost some weight. I made friends who were equally sun-averse. Normal teenage things took over my concerns. I had my heart severely broken for the first time in 2005; at the time, that felt like a much harder blow to take than chemo! Ups and downs of college and, eventually, real life persisted. That feeling of being diseased and gross slowly faded. My guilt and shame faded. I even started to talk more openly about having Lupus because that was so easy to do while in remission, while not feeling it so directly. I also had friends now who had known me a very long time and we were all grown ups now, so it was easier to have frank conversations about it. I felt safe that they wouldn't ostracize me. But it was always something from my past.

I lulled myself into a false sense of security. I always knew in my brain that a Lupus flare up can come out of nowhere, but I always thought that I would recognize one as such immediately. I began to feel tired or nauseous or some kind of "not good" in March 2017. I thought I had a cold. Then, I had my period and attributed my shitty feeling to that. Once that passed, it must be a little sinus infection or maybe a stomach flu. Then, a migraine. Then, a UTI. There were a series of different things that didn't feel good. I figured I just had shit luck and had one damn little thing after another. But my joints felt fine and I had no sign of any rashes or sores, classic Lupus symptoms and symptoms I'd had back in 2000/2001.

So, on the day that my parents insisted upon taking me to the emergency room, I knew I didn't feel well, but a Lupus flare was not the culprit. By this point, I had noticed that I hadn't been able to pee in about 24 hours (a new one in the series of shit-luck illnesses: I assumed it was a UTI). I told the nurses I had a wicked combination of a bad UTI, which I'd never experienced before, and a bad migraine. My head throbbed constantly and had been for three days. They treated me with some pain medication for the migraine and they catheterized me once for the UTI. They sent me home with some prescriptions and I was optimistic when I laid down in my own bed that night.

The next day, however, the pain pills were not working and, alarmingly, I still did not seem capable of peeing on my own. I'd been told to try to make an appointment with a neurologist if migraines were a regular problems for me. They had only ever been semi-regular, but never this bad. So, I called to make an appointment.

When I learned that the soonest I could get a regular appointment would be November 8th, I burst into tears, called my parents, and asked my dad to take me back to the E.R.

Most of my hospital stay is a blur.

I was officially admitted to the hospital the next day, Friday, April 21. But I still spent that whole day in the E.R. as tests were being run and while I waited to get a room at the hospital. I remember very little of this. As I write, I have to confer with Rich, my boyfriend, because the details are so fuzzy. My head was still pounding. I know a small menagerie of people were there (both of my parents, my boyfriend, and my best friend), but I have no memory of the passing of time. Looking back, it is crazy to me that they spent an entire Friday mulling around an E.R. and I am still overwhelmed that they did.

Sometime late Friday night, I was wheeled into a private room.

I was a resident at JFK Medical Center for two and a half weeks. During that time, I had one private room, one room-mate room, and another private room. I was given the last private room as a result of my need to have both chemo and plasmapheresis.

My headache mercifully subsided by Saturday. While I still couldn't pee on my own, with the headache gone, I could talk and walk and generally function. It would be two weeks before I could pee on my own, but - with the treatments I was about to receive - that ability did return before I was released back into the wild. In the meantime, the nurses had me on a steady schedule of catheterization every four to six hours (or as needed). I was able to feel that I had to pee, but my bladder just would not contract.

The nurses were in to see me regularly. They saw me when I was in good spirits and when I was in bad spirits. They were in so frequently, I couldn't easily hide it from them. Even when nothing bad had happened, they'd occasionally walk in on me quietly crying just out of frustration. Early each morning - around 6am - I had my morning bloodletting. Sometimes it was only three of four vials of blood, but sometimes it could be up to fifteen vials. Sometimes, they even came back for seconds of my blood. They came in several times a day with my medications. There were so many, it's a good thing the nurses served them up to me in those little plastic cups since I had no idea what I was taking. For a little while, they were also testing my blood with a quick diabetes finger prick test because prednisone can mess with your blood sugar. And, of course, all the nurses became very acquainted with my urethra and vagina during my regular catheterizations. I was told by multiple nurses that I have "perfect" anatomy. :)

A lot of doctors came in an out. The entire time I was in the hospital, I had trouble remembering which doctor had which specialty. They all came in and told me heavy information that I needed to process. Some parts I understood better than other parts. One doctor would visit in the evenings, around 10:30pm when I was already sleeping. Everything she told me was important, but I was often half-asleep when she presented me with the information and I never knew on which nights she might appear.

I understood that this was, in fact, a Lupus flare and that it seemed to have affected my spine this time. I never imagined a flare would manifest itself like this. I had multiple MRIs during my hospital stay and they found that I had inflammation in all three sections of my spine. As I understood, the spinal inflammation had caused the headache and the urination problem. I was diagnosed with traverse myelitis caused by the Lupus.

The thought of more chemo didn't bother me that much. I'd gone through that rigamarole before. I was optimistic that I would handle chemo just fine. The first dose was given to me at the hospital, over night, while I slept. It's about an eight-hour process, so doing it overnight was actually ideal.

The doctors also started me on a high dose (100mg?) IV steroid. This is also par for the course.

The plasmapheresis was a different story, though. I'd never had this done and wasn't exactly sure what it was. Additionally, I was informed that I would need this procedure at around 11pm when that one doctor came for her semi-regular evening visits. Since she woke me in order to tell me this, I did not understand very well what was going on or why. In the moment, all that really registered was that I would need to spend ten more days in the hospital. I did not take that part well.

The plasmapheresis treatment I received used Albumin (i.e. "fake" plasma) to replace some of the plasma in my blood. I received five courses over ten days. I had a central line inserted through my neck that stayed in (with sutures) for the ten days. I was, surprisingly, not scared when I went for the procedure to have the central line inserted. The doctor (surgeon? nurse?) who placed it was really nice and the atmosphere in the room was very light-hearted despite their task. The central line wigged me out more later when I could see it. Thankfully, the nurses kept it well wrapped up when it was not being used, so I couldn't really see how it was affixed to me. I felt like a science experiment.

I had treatments every-other day. On my "off" days, I was really just hanging around the hospital. I felt kind of silly because I was feeling much better. I wasn't feeling sick at all. I even had Rich bring my walking sneakers so I could walk around the floor a little bit, listening to podcasts, getting some steps in. Nurses would come in to give me my medications at certain times and/or to give me my regular catheterization. Sometimes, they would pop in just to chat. I really appreciated the time and care the nurses spent on me.

I think the nurses liked visiting me because, by this point, I wasn't feeling sick so I wasn't morose. I loved the company. I had a lot of really nice conversations with the nurses. They also allowed me to wear my own comfy clothes after I asked if I still needed to be in a hospital gown. Getting to wear my own clothes was a big win and made me ridiculously happy. The nurse manager's office was right across from my last room (the private room I was in for chemo and plasmapheresis). She was amazing. I was in the hospital during Nurse's Week and she brought my guests and me some ice cream cake that the nurses had for their celebration. I cannot state enough how amazing the nurses at JFK Medical Center were to me.

At the office, my co-workers all divided up my work to cover me. Jess kept in contact with my editors to let them know I was legitimately sick and my editors were understanding and patient with me when I finally returned. Adrienne, Allison, and Kathy all took pieces of my workload so that I wouldn't return to a giant mess of angry authors, editors, and reviewers. They really kept me in good shape so that I wasn't overwhelmed with work when I returned. They are my heroes for that.

My parents, other family members, and lots of friends visited. People I hadn't really heard from in years, since high school even, sent their positive thoughts via social media. My dad and Rich visited almost every day. My dad took the early afternoon shift and Rich took the late afternoon / evening. Lots of friends visited, some multiple times. It was truly overwhelming and I am still unfathomably grateful.

On some of these days, my visitors were required to wear masks because my white blood cell (WBC) count was too low. At one point, masks, gowns, and gloves were required so that my own family and friends wouldn't get me sick. I hated this more than I could say, but they did as the doctors and nurses asked. Jess, Carol, Adrienne, and Rich all posed in their hospital outfits for me and I had mostly forgotten about this until I came upon the photos on my phone months later. They were troopers for putting up with that.

I was anxious on plasmapheresis days. The tubes in my neck were there FOR this purpose, but I hated when they were touched or moved or messed with in any way. I did my best to avoid moving them when I slept. I was terrified when the nurse had to change the dressing around them. For treatment, other tubes and wires are hooked up to the ones inserted in my neck. That's the point! Through those additional tubes, you can actually see the blood being moved during the treatment. I asked that those tubes be placed behind me so I couldn't see it. All of this stuff was just a little too much for me.

I handled the plasmapheresis well. Until the forth treatment. About 75% of the way through my forth treatment, I began to feel lightheaded. I thought my anxiety about the entire thing was getting to me. I thought I was just overthinking it and scaring myself. Very shortly before I passed out, I told the nurse I was not feeling well, that I was sweating and feeling lightheaded. I only had that much time to get the words out before I conked out.

When I woke up, there seemed to be nineteen nurses in the room. My bed had been adjusted so I was laying down and, shortly after, they started giving me oxygen. I had only been out for about thirty seconds. It took NO time for all those nurses to come help me. I was shaken, but grateful and feeling better. I was immensely concerned, though, about whether they were going to finish the procedure. I wanted them to finish it because I feared that I would have to redo it (and have to stay longer in the hospital) if they didn't. Thankfully, after some of the doctors were informed and some discussions were had, it was decided that I had gotten enough Albumin for this session and that they were not going to continue because I'd gotten enough for this session.

In short, they believed that I had an a-typical response to one of my medications that caused my blood pressure to drop. I am on a blood pressure medication because it has a secondary use as a kidney protection medication. In 2001, my kidneys had been damaged, so I've been on this medication for my kidneys (and not my blood pressure) ever since. As a result, the doctors suspended this medication until I was done with the plasmapheresis entirely. (Even now, I only take half the dose I used to take.) Despite this very logical reason, I still believe that my anxiety had caused it, at least, in part. I was very hard on myself for it.

All of this happened before visiting hours. By the time my mom came, I was on the mend and the oxygen tube had been removed. I felt better, but it had been a lot.

When Rich came that night, he hopped in my bed with me. I was still pretty upset and drained.

Up until this point, I had been in pretty good spirits, but everything was really beginning to wear on me now. For the last plasmapheresis, I was told my parents could be there even though it was happening, technically, before visiting hours. I was even more anxious now than I had been. The last treatment was on Saturday, May 6th and went off without a hitch. I had the expectation (as did the nurses) that I was basically ready to go home after this final treatment. I was told I would probably be able to go home sometime on Saturday as long as the treatment went well.

Discharge papers were being written out when word came that one of the doctors was not comfortable letting me go home yet. I was told that this doctor worried I was too "unstable" and no one really told me what that meant.

Frustratingly, Sunday brought similar news. A doctor I did not know came to take my central line out. That doctor felt confident that I could go home and now that my central line was out, it seemed like a done deal. Once again, I was told I would be going home, only to get a phone call to my cell (not even a personal visit) from a doctor telling me I still could not go home, again without any real explanation. I became very depressed. I had two false-starts and I did not know why I could not go home. As far as I was aware, my treatments were done. I was able to pee on my own (with some effort, but on my own) by this point.

I feared something else was wrong with me. I feared I was going to need more treatment or maybe some other kind of treatment. I had no idea what "unstable" meant in my case. The nurses were only doing as they were told by the doctors and the nurses didn't have any more information. Most of the nurses also assumed I'd be going home on Saturday.

I requested a visit from any doctor who was available on a Sunday to come explain to me what the fuck was going on. Yes, I very much wanted to go home, but I also just didn't know what was going on with my body that made the doctors hesitate to let me go home. My patience was gone. I wanted to take a real shower. I wanted to see my damn cat. I wanted to sleep in my own bed.

When one of my doctors appeared at the door, she explained something I had never heard of before. While my plasmapheresis was done and I had handled that well, the final plasmapheresis happened simultaneously (and coincidentally) with my "nadir" from the chemo I'd received. "Nadir" was a totally new term to me in this case. I'd gone through cytoxan before. I don't recall this being a thing when I had gone through this the first time. In 2001, I was a high school freshmen. I would go in for my treatments one day and be right back at school the next day and every day after that until the next treatment day.

The doctor explained that ten days after a cytoxan treatment, my WBC count goes down sort of by design. This is something they know will happen and, depending on how low it goes, I am at greater risk of infection. Apparently, the doctor who kept halting my discharge feared that my WBC would go down too low and I would get sick at home. Okay, fine, but NO ONE bothered to mention this to me before now.

Additionally, the hospital was not doing anything in particular to prevent me from getting sick IN the hospital. I was there, surrounded by other people who were sick to varying degrees. I was allowed visitors and, at this point, they were not required to wear any prophylactic materials. So, while I now understood what the fuck was going on - and that I wasn't sick is some other new way - it now just seemed silly. Could I go home if I promise not to leave my house for a few days? I can happily promise that!

Also, one of the other doctors told me that there is an injection he could give me to make sure my WBC was okay. He saw no reason why I couldn't have the injection and go home.

While I was frustrated, I was happy to know the reason for the delay. Since it seemed like I was just waiting out my "nadir," I asked if I could have my IV removed. I had an IV in that was just pumping saline the entire time, but no actual medication. If I was just there to wait around, I hoped I could be unhooked. The doctor agreed. I considered it a win.

The nurses told me that Rich could walk me off the floor my room was on, so he took me on a field trip downstairs to the Au Bon Pain. I had been eating the rather tasteless hospital food for over two weeks. I needed a pick-me-up! It was the most excitement I'd had the whole time I was there.

So, again, on Monday, I was told I would be going home. I did not believe it. I refused even to tell my parents or Rich that those words had been said again. I was trying to prepare myself to be there indefinitely because I just didn't know what it was going to take to get released. I'd already been told twice - very assuredly - that I'd be going home and my hopes were way too high.

I was given the injection to help my WBC, but I didn't necessarily take that as a definite sign that I was going home. I had thought having my central line removed was a definitely sign I was going home, but it hadn't been.

Eventually, though, papers were being signed and instructions were being written out, so I cautiously told my parents. I deliberately didn't tell Rich because I didn't want him getting his hopes up again and I also didn't want him changing his after-work plans. (He was taking an evening program and he had class. In case I didn't actually get released, I didn't want him skipping his class. This portion of his program was taught online, so I wanted him to go home and "attend" his class as usual.) I only told Rich I was going home when I got the OK to put my real clothes on and pack my things. My parents were available to help me move out and my dad was available to drive me home.

Around 4:30pm on Monday, May 8, I was discharged. Rich agreed to go home and to wait for me there. My dad drove me to CVS first (to drop of all my new prescriptions) and then - finally - my apartment (where my cat - who I'd sincerely missed - didn't even bother to wake up from her nap to greet me). My dad didn't stay too long, but he helped me carry my things inside. My upstairs neighbor just happened to be walking down the stairs when we arrived. She met my dad and was very happy to see me home!

Rich told his instructor that I was finally home and his instructor let him out of class early. He helped me settle. He had presents for me that he had gotten several days earlier when we thought I'd be released (among them: Star Wars Rogue One, which we'd never gotten around to seeing in the theater). He came with me to pick up my prescriptions from CVS. He let me drive. I was SO excited to drive. There were problems with some of my prescriptions, but I was able to get most of them that night.

Even though I was told to stick to a low sodium diet, I cheated on this particular evening. We ordered Chinese food. It was the best food I'd ever eaten.

I still had a large hole in my neck from where my central line had been. I had to keep it covered and dry for two to three more days. I took my first real shower in two weeks the night I came home, but I had to be careful to keep my neck relatively dry. I couldn't wait for the hole to heal enough to fully immerse myself in the hot water, but I was still able to wash my hair, to wash the hospital grime off me.

Even better, I got to sleep in my own bed.

I am happy to say that I have not spent a night in a hospital since then, but I now have a great fear of winding up there indefinitely again. To my knowledge, I have done everything my doctors have told me to do and I am trying very hard to understand everything that is going on.

I cannot state enough how grateful I am to EVERYONE who visited, sent flowers/gifts, or sent positive thoughts one way or another (even if we hadn't spoken in years prior to this). My closest friends, my family, and my co-workers, especially, are amazing to me. I cannot state enough how exceptional the nursing staff at JFK Medical Center was for me during my stay (in all of the wards I was a resident in). You all brought me to (happy) tears and knowing y'all are out there and have my back helps me keep going. This ain't over yet.

I've completed the other five chemo sessions (for a total of six) that I knew I would have to do after being discharged. My doctor decided to take it slow and have one treatment a month for five months. Since I handle the treatment well, we are going to do about three sessions, but with three months in between, beginning in February 2018. The Lupus is no longer something I can talk about in my past, though I do hope to get to that point again eventually.

My body still does not feel like my own body. Most of the spinal inflammation is gone, but there was still some in the lower part of my spine as of my last MRI (which was back in June). I seem to have some nerve damage, which causes my legs to twitch. Thankfully, my neurologist was able to give me some medication to lessen the twitching. At first, it had been pretty violent and uncontrollable. It would keep me awake at night. It made driving a little difficult. Now, with the medication, they rarely twitch. It usually just feels like I NEED to move them a little bit, but it's not an uncontrollable kick. Most of the time, they feel fine.

I am still on prednisone, but we are lessening my dose every month or two now. I know the prednisone is necessary and is helpful, but it makes you feel hungry all the time and it causes water retention. I do not have the moon face I had back in 2001 when I was first on prednisone, but the moon face is my face right now. I am grateful to be feeling better, so it is what it is, but I know I will feel more like myself once I am off the prednisone and can start getting my body back.

My lower body may never feel exactly like it used to. My legs have a weird sensation. They aren't numb and they don't tingle. They don't feel weak. They don't hurt. I have never been able to adequately explain how it feels. They just don't feel like they used to feel. Additionally, my bladder may never work correctly again and we are considering some sort of "bladder pacemaker." I've been told that I can only pee on my own right now because I use my abdomen to push. My bladder still does not contract properly. On the other hand, because I am "young," several of my doctors think that - with time and with the rest of the cytoxan treatments - my bladder function might return. So, we are delaying the bladder pacemaker for a little while.

I have felt very drained for most of the rest of 2017. As a result, I've become a little lazy. Between being sick and living in Trump's America, my heart has not been able to take anything else. I haven't wanted to think too hard about anything, but I know that inaction and silence breeds complacency and I SWORE on November 9, 2016 that I would not become complacent.

Going in to 2018, I know I still have to carry the weight of this flare up and do as I am told by the doctors. Many of my personal life goals are on hold. I want to travel, but also need to be available for all my doctor appointments and treatments. However, that doesn't mean I can't set some personal goals for 2018. Admittedly, I am also slightly terrified to travel in my current state, but if my doctors clear me for it, I do not want to allow my fears to stop me. I believe I should be done with treatments and back down to only the essential medications by 2019, so I am tentatively penciling in 2019 to be the year I really travel.

We'll see how things progress.

Some goals I feel I can achieve in 2018:

- Travel when/if possible

- GO TO CANADA SOMEHOW SOMEWAY

- Glacier National Park

- If treatment allows, at last, one goddamn trip to Europe or some other goddamn continent

- Read more (stop skipping lunch/reading time!)

- Write more

- Return to my pre-hospital weight

- Finish either the French or the Dutch (but not necessarily both) Duolingo trees

- Get involved somehow with the 2018 midterms / volunteer someplace

Hopefully, I'll have some friends by my side to accomplish these goals. I feel closer to my friends now than I've ever felt. I knew I had some of the best friends (and best co-workers) I could ever hope to have, but they all proved it even more this year. I know I am strong enough to press on, so if 2017 is my lost year, 2018 is going to be the year I don't back down. 2017 tested me and I passed.

I'm still fucking here.