Secondary Facility

“You know what my usual breakfast is? Coffee and a cigarette,” Lilian told me and Allanya and the rest of the Breakfast Room as she did every morning. This was one of the last times Lilian got to give us her morning speech. She was being released in a couple of days.

She would go to a nursing home for further therapy until arrangements could be made with her family for her long term care. Most elderly stroke victims are no longer able to live on their own, so there is a lot of organizing that had to go on behind the scenes of the Rehab ward as patients approached their release date. The Social Worker for the Rehab floor had her hands full arranging all of this, making sure patients were released to adequate care and that medical insurance and/or Medicare was covering what they were supposed to.

My release date was scheduled for June 15th. We were closing in on June 10th. I was making some progress with my left arm, but I still couldn’t walk (or pee). I was frustrated. My PT, Cheryl, was frustrated, too.  There didn’t seem to be any good reason why my left leg wouldn’t “turn on.” One afternoon, she explained the reality of the situation to Matt and I. “We can’t send you home like this. You have three small children to take care of. And you don’t have any family here to help you, right?”

True enough. At that moment, I’m assuming those three small children were at another mom’s house. Since school ended for my eldest, the moms of our school/parish had started taking the children a couple of mornings a week, so that Matt could come see me and talk to the therapists. Matt had also hired a sitter for the evenings when he taught. He was stretched to the breaking point already.

“So, will they push back my release date?” I asked.

“Possibly, but it depends on your insurance. It may not pay for a longer stay here. We need to seriously consider a secondary facility.”

Secondary Facility? What the hell is that?

“Like a nursing home?” I dared to ask.

“Yes, but not how you’re thinking,” Cheryl said. “There are younger people of there who need more care than they can get at home. We need to make sure you get the care you need.” The bottom dropped out of my stomach. I’m not going home? They’re going to put me in a nursing home?

The pessimistic side of me kicked right in. They should. You’re of no use to anyone like this. They should just put you away and get on with their lives.  I started to cry. “I don’t mean to upset you,” Cheryl said. “I just want you to understand why I’m pushing you so hard and how important it is to get that left leg turned on.” She said it like I controlled it. Like I could just magically make it start working. If only. Is it time for my montage yet?

She left me to talk to Matt. There wasn’t much talking, mainly crying on my part while Matt tried to hold me (which is pretty awkward in a wheelchair). When Matt left later that afternoon, I lay belted in the bed with my dysfunctional bladder, my paralyzed leg, my barely uncurling arm and had a long talk with the Angel I Never Met. A very long talk.

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MRI Meltdown

“You know what my usual breakfast is?” asked Lilian. “Coffee and a cigarette.” Yes, Lilian said the same thing to us every morning, but she also had someone new to talk to these days. My friend Allanya started coming in at breakfast to bring me real coffee. It took me a few days to come to terms with the fact that someone would voluntarily leave their house early to come to the hospital at 7:30, particularly Allanya, who I had never been that close to even though we had known each other for several years.

In fact, I had been warned that Allanya was a nefarious character plotting the demise of our mommy group. She was not to be trusted and was, in fact, to be shunned. I am ashamed to say that, for a while, I believed our more gregarious mutual (ex) friend and, while I was never overtly cruel to Allanya, I never went out of my way to include her or to build a friendship with her, either. I apologize for that. Here and now on this public blog, I apologize for getting caught up in Mean Girls politics and not reaching out to her at a time, about a year before all of this happened to me, when she likely could have used a friend. Thankfully, Allanya was a better friend to me during a terrible time in my life than I was to her. She brought me coffee every morning that she could. Real coffee. In a giant disposable cup with a lid. If that (and the Urecholine) couldn’t kick my bladder back into gear, I would have to start taking down the home catheter kit information from CNN.

It didn’t work right away, but after about a week in Rehab, I would have an occasional “success” in the late afternoons or early evenings, as if my bladder would “turn on” suddenly late in the day, but it was unpredictable. Many, many, many other times I would wait and wait and wait and nothing would happen and would end up being scanned and cathed. Occasionally, that meant being cathed by a male nurse, usually Opare (there should be an accent on that “e”, but I can’t figure out how to type it, you pronounce it “Oparay”). Opare was a big guy. I can’t remember if he was Sudanese or Ethiopian, but I remember the first night he was assigned to me they had to come “have a talk” with me and ask if I was comfortable having a male nurse cath me.Whatever. Cath away. My dignity left weeks ago. Anyway, I have a male OB/GYN and have had three babies with any number of male personnel in the room. I had no problem with Opare.

Well, except for that evening when he came in to tell me they were coming to get me for an MRI. Gulp. “Um, ok,” I said. And I was okay. I really was. For about 5 minutes. And then I wasn’t.  Then I was hysterical. Completely. Totally. Hysterical. I went from zero to train wreck in the five minutes he left me alone. He came back to the room and was shocked. He asked what was wrong. I couldn’t even answer. I’m not sure I even knew. I think I finally choked out something along the lines of “what if it came back?” I meant the tumor.

“Wouldn’t you rather know that, then?” Opare asked. No. Not really. I don’t want to know anything anymore.

It didn’t look like I had much choice, so I tried to pull myself together as best I could. Opare left and I called Matt.  He was upset that he couldn’t be there. Then Opare came back with Angela, one of the techs. So young, this one, too. They really have to stop hiring kids straight out of junior high. “I’m sending Angela with you,” Opare said, “I’d come with you myself, but there’s only two of us on the floor tonight.” God bless Opare. He really did not have enough staff on to spare Angela for what could have been a long event. As soon as you leave one ward for another, you are subject to their schedule and can get delayed.

I had learned this the hard way a couple of days previously. Ever since I had come to Rehab, I had felt like I couldn’t see properly. It wasn’t double vision, but things felt “off.” I knew I was WAAAAY overdue for eye exam, but the brain surgery opened up frightening new possibilities for why this was, so they scheduled me an appointment with the neuro-ophthamolagist at the hospital. They sent yet another impossibly young tech with me. This one, Laurabeth, really was impossibly young. We got to talking and she told me she was from a big Catholic family and had a little sister starting second grade in the fall like my eldest was. She pushed my wheelchair across the hospital and then sat with me in the waiting room at the neuro-ophthamology office. We sat. And sat. And sat. I told her she could go back and I would have them buzz her, but then she gestured to my Swedish belt. “I have to unlock you for the exam.” D’Oh. Perhaps the earth could just open up and swallow me now?

Anyway, as this appointment dragged on, I realized I was going to miss the visit I had planned with my realtor-friend Liza (you forgot about that house-on-the-market thing, didn’t you?) and her best friend, another mom from the church/school, Beth Ann. I had to call them and cancel. The appointment took almost 3 hours, mainly of waiting. All of that waiting revealed that there was nothing wrong with my eyes from surgery, but that my prescription was terribly outdated.

Jumping back to Opare and the MRI meltdown, I felt terribly guilty that he was going to send Angela with me after having basically dominated poor Laurabeth only a day or two before, but I also was a complete mess, so I agreed. Angela said she’d be right back to get me. Five minutes passed, then ten. Then someone with a clipboard came in and said “You’re not [enter man’s name here], are you?” I shook my head. He left in a hurry. I heard them in the room next door (my door was wide open). “We’re taking you down for your MRI now.” Wait, what? Two of us? I know there are lots of brain injury people, but two of us at the same time?

Opare reappeared. “The MRI was for the patient next door. They had the room numbers wrong.” You mean I had that whole meltdown for nothing? Yep. Pretty much.

 

Waiting for my montage

“You know what my usual breakfast is?” Lilian asked as she was rolled up to the breakfast table. “Coffee and a cigarette.” Belly shots and meds for everyone.

Looking at the calendar, June 2, 2012 was a Saturday. I don’t have any notes for that day and I may have had one or more of the rotating temporary therapists. I know I had a scheduled release date by the 2nd: June 15th. I had less than two weeks before I would be sent back out into the real world to take care of three small children. It was a Herculean task given where I was on June 2nd. Urecholine was making no difference with my bladder so far and I was still being cathed several times a day. So is learning how to cath yourself part of the Rehab curriculum?

My left hand was showing some limited movement, but my shoulder still was not. When I was lifted to my feet, my left ankle would almost immediately roll and the only way I could “walk” was with the help of two therapists. One, often Germaine, would be next to me, supporting some of my weight and telling me to “look up, look up” as looking at your feet doesn’t work at all. Cheryl would be next to me on a rolling stool, lifting and placing my foot a step at a time. It was slow and tedious. 13 days? I’m supposed to go home in 13 days? I’ll be a cripple and a burden. I need a montage scene. Like now.

When I was 18, I left my hometown of Denver to go to college in Los Angeles with stars in my eyes. I was ready to take on Hollywood and become a major director. I lasted a year as Film Production Major. Turns out I could not talk mise-en-scene and I thought Citizen Kane was just kind of boring. My movie tastes were not highbrow enough for me to a film major, so I switched to Television Production. Then, I got a PhD in Medieval Studies. Go figure.

Where was I? Oh, yes, my lowbrow taste in movies and what that meant in Rehab in 2012. What it meant was that I was sitting in my wheelchair (now padded thanks to my PT Cheryl) waiting for my montage scene. You know, the montage scene in every cheesy movie where the downtrodden hero “slowly” overcomes impossible odds through short vignettes and ends up building something amazing and/or becoming someone amazing over the course of a single song.

Here is a classic example and one of my favorites from Rocky IV. In the cold, unfriendly USSR, Rocky Balboa prepares to face the Soviet boxer Drago to avenge the death of his friend and trainer Apollo Creed.

If only I could get a montage. If only I could go from hunched in my wheelchair to boxing a Russian over the course of a song. Or, if not boxing a Russian, maybe just peeing on my own and walking unassisted.

A note to those of you who have been reading every day: thank you, it means a great deal to me. Here in June 2014, things are starting to get crazy with the end of the school year, kids’ baseball, trips to see family and general “summerness” with young children. My original intent to post an entry every day is not realistic in the face of parenthood and remaining plugged into life as opposed to my laptop, so the entries may start to slow down from every day to a few times per week. If you’d like, you can subscribe by email, so that you will be notified when I post a new entry. I will still be posting them on Twitter (for my whole 10 followers–Twitter is NOT my thing) and Facebook, too.

Out, damned staples! Out I say!

I think I’ve mentioned how insanely early the day started in the Rehab ward and that it was the night nurses and techs who got the patients ready for breakfast before the 7:30am shift change. So, when I heard a cart being wheeled in on the morning of June 1st, I imagined they were coming to scan and drain my bladder. Why would they need to scan it first thing? They know it’s full.

I looked up to see a nurse I didn’t know pushing a small tray on wheels. Not the bladder scanner. “You ready to get those staples out?” she asked. Did anyone else just  hear that choir of angels start singing?

She went straight to work with the medical equivalent of a staple remover and– snap, snap, snap– out they came. She muttered something about a couple of sutures and switched tools to remove those, too. The staples at my belly were slightly more challenging with its softer, saggy, especially after 3 pregnancies and then dramatic rapid weight loss, skin. But even those staples came out only with a mild twinge and I was left looking at the odd collection of metal that had held me together for the last three weeks. Not so tough now, are you staples?

And just like that, I was free. No more Frankenstein Chic. Now I was just bald, stubbly and crippled with a malfunctioning bladder. Things are looking up. I showed off my new staple-free skull at breakfast that morning as they passed around breakfast and belly shots. “You know what my usual breakfast is?” Lilian asked. “Coffee and a cigarette.”

The lack of coffee was becoming an issue on more than one front. I was beginning to get headaches every morning, vaguely in the area of my shunt. It was enough of a concern to Dr. R that she called one of my neurosurgeon’s staff in to check the shunt. They confirmed that it was properly set and when it became clear that the headaches responded to tylenol, they simply added tylenol to my morning pill regimen and contributed the headaches, at least in part, to caffeine withdrawal. That alone dumbfounded me. That a headache would actually recede when I took medicine was almost beyond comprehension. For months and months, I had been self-medicating with so much ibuprofen that it’s a wonder I didn’t send myself into liver failure. Funny thing about ibuprofen, it doesn’t do much for hydrocephalus or brain tumors. This stills blows my mind two years later that, when I have a headache, I can take something and it will actually work.

Matt had another theory he was considering as well. Knowing that we generally split a pot of coffee between us, he wondered if more coffee might be the key to getting my bladder back on track as well. “Would they let you order two coffees?” he asked. I love coffee, but I could barely choke down the cup they gave me much less two, especially in the half hour they gave us for breakfast. “Do you think they would send someone down to Tim Hortons for you?” Doubtful.

The solution presented itself within a day or two. My friend Allanya texted me asking if there was anything she could do for me. Jokingly, I replied something about bringing me coffee, knowing that couldn’t actually happen. Turns out, I had underestimated Allanya. Riverside wasn’t very far from her office, so she agreed that, starting Monday (June 1st was a Friday), she would bring me coffee on her way to work. And she did. For the rest of my stay in Rehab, she brought me coffee on weekdays on her way to work and sat with me at breakfast, joining my little old lady crew. Little did I know what drama that small act of kindness set off behind the scenes among our formerly close group of mutual friends. Unneeded, unnecessary and unwanted drama, but, at that point, at least they kept it from me. She kept her immense displeasure that I  dared to take coffee from Allanya from me, taking it out on our friendship later once I was out of the hospital. How considerate of her.

My new stapleless state earned me a shower with an actual hair (or stubble) wash that afternoon as part of my OT with Jenny. I had been upgraded from the drive thru in the bottomless wheelchair, to an actual shower while sitting on a bench seat. Jenny would direct my actions, instructing me what to wash and what hand to use. I really couldn’t do much with my left at all, although the fingers were beginning to uncurl. “That’s unusual,” Jenny said, “usually the shoulder comes first and the fingers come last.” She wondered if my subluxation had anything to do with it and taped my shoulder after my glorious, wonderful (still razorless, but wonderful anyway) shower.

Later that night as I was parked in front of the mirror to brush my teeth, I think I took my first real look at my scar. It is horseshoe shaped on the top of my skull. You can’t really see it now that my hair has grown back, but it was very prominent then, even without the staples as was the giant lump from the cranial shunt. A few days later, my head was itching badly and after I scratched it, I noticed blood on my fingers. Dr. R checked it out and discovered one suture that had been missed. She removed it. Woo hoo. Funny thing, it’s only as I was mentally composing this entry that I finally put together why I had both staples and sutures. The staples were from the craniotomy. The sutures must have been from when they placed the shunt. And yet another piece falls into place thanks to my self-created blog therapy.

 

Woo Hoo?

“You know what my usual breakfast is? Coffee and a cigarette.” Lilian adjusted her oxygen. Just another morning in Rehab with our Keppra, Lovenox, mysterious pink and brown pills and now my giant, moisture-sucking Urecholine. Oh my God, the pills just sucked up all my coffee. I really needed that caffeine. 

This is probably about the time I first met a young nurse named Jourdan. I remember her nametag and the unusual spelling of her name. She was pretty unforgettable anyway. Imagine Barbie personified with all of the sweet midwestern charm you always hoped Barbie would have, but people trying to imitate Barbie never do. Jourdan was the real thing. I was suspicious of the very beautiful, very young nurse the first time I had her. Surely she must be a bitch. Or she’s stupid. Jourdan was neither, but it took me several days of having her as my nurse before I viewed her with anything less than skepticism. Jourdan was so stunning, in fact, that one morning in the Breakfast Room as they were passing out Lovenox, she went up to an older gentlemen hunched in his wheelchair who I had never heard speak and suspected couldn’t speak (some stroke victims suffer something called aphasia). Jourdan told him she would be his nurse that day and he said in a perfect imitation of Homer Simpson, “Woo Hoo!”

In other news, I was keenly aware of the fact that my accursed staples would be coming out in 24 hours. Woo Hoo! Unfortunately, that knowledge appeared to be directly tied to my nerve endings and now the damn things itched more than EVER!

No one goes into the hospital thinking they are going to be there for seven weeks. I had gone to emergency with nothing. My husband had brought me a small bag a few days in and I had worn a gown in the ICU, but there’s a reason why all of my early Rehab memories seem to feature my yellow university sweatshirt. It’s pretty much all I had with long sleeves and my new 92 pound frame could not control its body temperature. I was always cold even though it was almost June.

My friend Karla came to the rescue sometime during that first week in Rehab, bringing three important things. First, she brought me several bags of clothes from Target. Second, she brought me an electic razor. Woo Hoo! Third, she brought me Taco Bell. Best. Friend. Ever. A few days later, a box arrived from my mom with more clothes in it. Double Woo Hoo! It was very strange to be wearing all of these XS clothes when I had been a M before all of this started. Ah, the Brain Tumor Diet, I suspect everyone in Hollywood will be clamoring for tumors and brain bleeds.

Therapy normally wrapped up by about 2pm each day and after Karla brought me the razor I remember sitting there with it one afternoon trying use it. It was a lot harder than I thought with a dead leg and a dead arm to maneuver, or not, as the case may be. Lydia was on one afternoon and came in (probably to cath me–no Woo Hoo there) and saw me struggling with the razor. “I’ll come back and help you out in a bit, Katie-girl.” I didn’t really expect her to since nurses have a way of being pulled eighteen different directions, but sure enough, Lydia came back late that afternoon and sat next to my bed. Then she did the most amazing thing. She shaved my legs that hadn’t seen a razor since May 7th-ish. She did my underarms, too. I might have cried. Woo-sniff-hoo!

My legs weren’t silky smooth, you need a straight razor for that, but those were forbidden for the Lovenox set. No razors (or even nail clippers, although my friend Melissa smuggled me a set) until you can “ambulate at least 400 feet.” Considering I had little independent movement in my left leg, that was likely to be a while. Or never? That little niggling part of me would question.

Starting May 31st, I have the luxury of being able to look back at my Rehab Journal for a tiny snippet (usually just a few words) of what I did in each session that day. It looks like Cheryl had me practicing with a cane that day. I do have a vague memory of a near-disastrous session with a cane in the therapy room and remember Cheryl saying that she really didn’t want me using a cane when I got out. But the mysterious Lily who I haven’t talked to uses a cane, why can’t I?

It also says I met with Dr. C, the psychiatrist, that day. That I remember pretty clearly (although I met with her at least once and maybe twice more). I remember thinking she looked like a displaced New Yorker with her animal print blouse and cats-eye glasses. I wasn’t sure what I was supposed to talk about, so I talked about everything, probably all at once. I told her about being a professor and my desperate fear of being “dumb now.” I told her how guilty I felt for doing this to my husband, mother and children.

With some trepidation, I even told her about the hallucinations I thought were caused by the tumor and my “elaborate ranking system.” This was an a-ha moment because I told her I thought I had been having those hallucinations for months because of the tumor and she said that she doubted it. She suggested, instead, that it was probably the meds immediately after surgery that caused the hallucinations. Oh shit. Really? So, you mean that all happened just a few days ago? It was already beginning to feel far away, something that happened months, a lifetime, ago.  It took me a while longer before I was really able to accept her timeline, but it was, of course, the correct one. As I mentioned in a previous entry, Dr. C thought my elaborate hallucinatory ranking system was actually a good sign, a sign that I hadn’t ever succombed completely to that “other” world. By the time I had finished with our first session, with the promise of more to come, I had to admit that temp-therapist-Andrea-bitch had been right. I DID need to talk to the shrink. It was a great weight off of my subluxxed shoulders. I’m not crazy. Woo Hoo.

 

Desperately Seeking . . .

“You know what my usual breakfast is? Coffee and a cigarette.” Well, good morning, Lilian. Pass the Lovenox. I’ve still got an unbruised spot to the left of my belly button.

There are two more people I met during those first few days of Rehab that I wanted to introduce here because both of them played an important role in my recovery.

The first is Robyn, the Recreational Therapist. The what? Yes, you heard me right, a Recreational Therapist. When she first introduced herself, she explained to me that it was her job to help patients regain their hobbies and general enjoyment of life. There’s a JOB for that? She told me that our time would be limited at first, but she would see me more often, the closer I got to my release date and she asked me about my hobbies. I told her I used to garden and camp. She began to tell me about the Rehab Ward’s garden on the hospital grounds tended primarily by patients. Awesomesauce. 

She told me I would participate in a field trip before my release to help me learn how to negotiate “the real world” again. A little niggle of fear began to grow. So I’m not going to just walk out of here completely normal again am I? I mean, I knew I was in pretty bad shape what with the wheelchair and the bladder scanner and all, but the mention of learning to “negotiate” the outside world was an acknowledgement that I wouldn’t be back to “normal” even when I left and I wasn’t ready for that yet.

Later she had me participate in a “group activity.” Let me just put it out there that there is nothing I dislike more than “group activities.” I don’t EVER assign them in my classes because I hate them so much. I was already getting my fill of forced socialization at breakfast and lunch (they usually relented at dinner at let me eat in my room). That day, Robyn cleared the tables away in the Breakfast Room and arranged all of our wheelchairs in a circle. Billie and Lilian were both there, but the mysterious Lily was not. Then, she passed out what I can only describe as giant plastic novelty hands. I just tried to google an image of one and failed. They were plastic hands in bright colors that you held by a stick. We each held one in our good hands. Then Robyn blew up a balloon and tossed it to Billie. We were supposed to hit it to one another with our giant plastic hands and keep it from touching the ground. Antisocial adolescent Katie kicked into high gear. This is stupid. I’ve been humiliated enough. Not doing it. When the balloon came my way, I made a half-assed attempt to hit it and I did. Oddly satisfying. Alright, one round. Next thing you know, I was laughing. Actually laughing. We all were. And she had me. Robyn had me. Hook. Line. Sinker.

Bonus: Robyn had a therapy dog that was with her all the time. Oceana was a black lab and we were free to pet her. My interest in getting a dog was suddenly rekindled fiercely.

I also met Dr. R that Tuesday after Memorial Day. Dr. R was the doctor assigned to the Rehab Ward. There were also rotating GPs who checked in with me on occasion, but Dr. R was the primary Doctor of Physical Medicine and Rehabilitation (just looked up her actual title, thank you Google) for the Rehab Unit. She came in to chat with me and to assess the damage I had done to my chin with my Swedish-earning pratfall. First thing I noticed, she spoke to me like I was an intelligent, if not fully functioning, human being with actual feelings. She tested my left arm and looked at my left leg. I was embarrassed about the hair and she suggested I have someone bring me an electric razor. She confirmed that the staples in my head and belly were coming out on June 1st. Woo Hoo!

“Now, let’s talk about your bladder.” Dr. R went through several different possibilities for why it still wasn’t “turning on” and I why I was still being scanned and cathed several times a day including the possibility that the neurosurgeon had “gone through” that part of my brain to get to my tumor and there was some damage.

“So will it come back?” I asked. I had odd bits of lag time between sessions and often found myself watching CNN or other daytime television. Suddenly, I was noticing commercials for home catheter kits. Oy vey. Dr. R said she was going to add a new medication to my collection of pills to try and help my bladder recover, Urecholine. Oh good, the Keppra, Lovenox, stool softeners and whatever else they give me each day is not nearly enough meds.

I liked Dr. R already, enough so, that I was willing to take the plunge. “The Speech Therapist I saw on the weekend said I needed to see the shrink.” ***note to loyal readers, if you read that entry when it was first published, I inadvertently left out that tidbit. I’ve gone back and and edited it for future readers.***

“We recommend all of our patients see Dr. C at least once while they’re here,” Dr. R said.” She’s in on Tuesdays and Thursdays. We’ll put her on your schedule.”

“Good, because I’m a bit of a train wreck,” I admitted. “I used to have everything under control and could manage so many different things at once. Now I can’t even pee.”

“That’s totally understandable. It would be stranger if you WEREN’T a train wreck.” I think I love her.

I called this entry Desperately Seeking because Robyn and Dr. R are actually two people I would like to get in touch with again. I actually saw Robyn again in the real world about six months after my release and I’ll write about that in another entry. As for Dr. R, they’ve moved the Rehab Unit out of Riverside Hospital to an off-site facility and I’m not sure if she (or Robyn) went with it. I have recently found an email address for her and now just have to figure out how to compose a “Hey, Patient Six from May 2012 is doing pretty good now and blogging about you, hope you don’t mind” message.

 

Meet the Therapists

“You know what my usual breakfast is?” Lilian asked as she did every morning and then immediately answered herself. “Coffee and a cigarette.”

It was Tuesday, May 29th. I was wheeled into the Breakfast Room sporting my new Swedish belt. I immediately looked for other patients wearing them. Billie didn’t have one, but Lilian did. “You’ve got one, too. What did you do?”

“I don’t remember,” she answered, “but I’m trouble.”

“Yes, you are,” one of the nurses kidded, I’m pretty sure Amy was on duty again.

“What did you do?” Lilian asked me.

“I got up to answer the phone and fell flat on my face. Now I’m a prisoner.”

“Ain’t that the truth.” Breakfast with my buddies. Anti-seizure meds and belly shots all round!

It was different today, more bustling. They brought our schedules around as they had on Saturday and Monday, but this time Germaine was there. Germaine was a Rehab tech. She was an extra pair of hands and just seemed to do whatever was needed. At breakfast, that meant checking schedules and making sure everyone knew who they were meeting and when. She also went over our menus with us. Menus? There are menus?

Turns out we were supposed to be filling out menus for the following day’s meals. This was another thing that had fallen through the cracks on the holiday weekend. Germaine gave us all golf pencils and we circled what we wanted. Then she came around and made sure we had filled them out correctly and were actually getting something we liked. If a patient couldn’t use their writing hand, she would fill it out for them. Inevitably, she had to point out the entire left side of my menu, which I never saw the first time I looked at it.

I noticed someone else at breakfast that morning, a young Asian woman in her wheelchair with her head shaved like mine. Is that Lily, the 32-year-old Billie mentioned? But she was across the room and I couldn’t get to her. I couldn’t move my wheelchair with only one working arm and foot. I saw other patients do just that, zip along with one foot and one hand, but I just ran into things when I tried. I stopped one of the nurses as she passed, “is that the 32-year-old who had the brain tumor?” I asked.

“We’re not allowed to say anything about why anyone is here. You can talk to each other, but we’re not allowed to say anything.” When I turned back to look at Lily again, someone was pushing her out of the room. I would later discover that was her husband, who came at breakfast every morning.

Slowly, therapists in their purple scrubs would enter and claim their patients for the first session. All new faces, these were obviously the “real” therapists. I don’t remember who I met first.

My PT was this impossibly tiny –even by my 5’2″, 92 pound-at-the-moment standards–young woman named Cheryl. Why, yes, this makes two Cheryls that have appeared in this blog so far and there will be a third, but I promise to spell her name with an ‘S’ even though I think that’s wrong. This Cheryl may have been teeny, tiny, but I would discover she was TOUGH. Tough in the way a therapist is supposed to be, that is. That first day was a bit misleading since she spent our entire session trying to figure out how best to strap a cushion to the seat of my wheelchair to help my bony butt. I think I must have told her about the weekend and my posture. “Yeah, we’re definitely going to have to work on that,” she said.

My OT was Jenny. Jenny was extremely no-nonsense. She rarely joked or smiled, but she exuded confidence. We spent our first sessions in my room, re-arranging everything. She wrote a whole set of instructions on my whiteboard (moving my yellow Toileting Schedule aside) aimed at forcing me to start looking left again and she explained Left Neglect to me in more detail. She asked me what the first household task I wanted to remaster was, I told her about my boys and the neverending pile of laundry. She left me towels to practice with, but I had nowhere near the movement necessary to do that yet. In fact, when Jenny inspected my arm and shoulder more closely, she was not pleased. “Subluxation,” she muttered as she probed. Between the stroke and the rapid weight loss, apparently, my shoulder was hanging on by a thread. She promised to investigate a brace or tape and, with Jenny, I had this feeling already that whatever she promised, she would deliver.

I had a team of ridiculously young Speech Therapists. They were were working together because one was about to finish her rotation at Riverside and would be leaving in a week. I think her name was Lauren (maybe). The other one was Tracy. Tracy was super quiet and let Lauren do most of the talking. This first day, Lauren spent the first session talking about my new Swedish accessory and going over The Rules. She told me that in a week or two, they might be able to re-evaluate my Swedish, but I was going to be stuck with it for a while.

She also gave me a notebook to use as my “Rehab Journal.” I was supposed to bring it with me to all of my sessions, so that I could record what we worked on. I still have it. In the front, she stapled a calendar. Looking at my chart, she went to May 3rd and wrote “came to Riverside.” She then filled my main surgery on May 8th. My second surgery isn’t on this calendar, which is why I’m not quite as sure about the date. She then took out a blank calendar for June. On June 1st she wrote “STAPLES OUT!” “Really?” I asked. I was elated. I would no longer have to adhere to the style I was calling “Frankenstein Chic.” Now if I could just get out of this belt. And pee. And use my hand. And walk.

If this entry seems more positive than my previous couple, you’re right. The Rehab Unit had transformed overnight. All I can say about that is do your best not to arrange any major medical crises, including transfers between wards, over holiday weekends.

 

 

Waiting for Rock Bottom

Sundays were literally a day of rest in the Rehab unit, they would bring you your meals in your room, if you liked, and there were no therapy sessions. May 27th was a Sunday and I spent it just resting except for a visit with Matt and the boys. They came by after church and took me for “an outing” downstairs to the Tim Hortons, which was as far as we could go. My butt was so sore in the wheelchair that I couldn’t stay very long. The results on my UTI test came back positive, so I was started on antibiotics, but that still didn’t explain completely why I couldn’t pee. They continued to cath me every few hours.

The 28th was Memorial Day and was a therapy day, but with temporary staff again. The therapists I saw that Monday were not the same ones I saw on Saturday nor were they my “real” therapists that I would meet on Tuesday. It was a different set of “fill-in” therapists. I don’t remember anything about the Speech Therapist that day and, after my experience with Andrea, I am kind of happy about that. Although, as I type, I have this sinking feeling–what if I saw Andrea Saturday and Monday and my particularly bad meeting with her was on Monday? Again, go back to my first entry. I can’t promise everything I write is entirely accurate.

The only thing I remember about the OT (Occupational Therapist) is that she wore glasses and that she gave me a worksheet full of letters and asked me to circle all of the “H’s.” I did. Awesome. Gold star. PhD, you know. She took it from me and looked it over. She circled an “H” I missed. Well, I did just have brain surgery. And another. Crap. And another. And a few more.  Then she started telling me about something called “Left Neglect.” Basically, I wasn’t seeing or processing anything to my left. This gets better and better.

The only thing I remember about PT (Physical Therapy) is that my therapist was a man that day and that I spent a good portion of one session crying while he sat there in the awkward way men do when faced with a crying female. I think I saw him later on in my Rehab experience and he told me how great it was to see me doing so well (see, crazy Andrea-therapist, is that so hard?).

At some point I came back to my room to see a bright yellow sign taped to my whiteboard. TOILETING SCHEDULE. Oh Dignity, I remember you fondly. A tech came in and explained that given my trouble “producing” they were going to be scanning my bladder every two hours and cathing me whenever I had more than a certain amount of urine if I couldn’t go on my own. I don’t . . .I can’t . . .there’s not even any . . .so humiliated . . .so ashamed. Really, God? I can’t even pee? I can’t even PEE? I know. I know. Thankful to be alive and all that, but I could really use a break right about now.

A break would not be coming. May 28th is my eldest son’s birthday. In 2012, he turned 7. My husband had planned to take the boys to his favorite restaurant and then to bring a small cake to my hospital room. He was going to call when they were on their way. Early that evening, I was sitting on my bed and my cell phone rang. It was plugged in across the room and I couldn’t get to it. Then the big clunky land line started to ring. I knew it was Matt telling me he was on his way. It was on my rolling tray, just out of reach, only a step away. I stepped.

OH MY GOD I’M FLAT ON MY FACE ON THE FLOOR! I couldn’t get up. I couldn’t reach my bed control with the Call button. I was stuck. I didn’t feel hurt, but there was no way I could get back into bed. After a couple of minutes, I remembered there was a call button on the bedrail. I reached it somehow. “I fell,” I managed when they answered.

In rushed Amy, the nurse that day. “Oh my God, what happened?” she asked as she paged for another pair of hands. Two of them dragged me back up on the bed. I told her about the phone. “It’s always the skinny ones. You guys are wily,” she said.

Then the tech, I don’t remember which one it was, said “at least the skinny ones are easier to move.”

Amy concurred and then looked at me. “Did you think you could walk?”

Ummm. Good question. “I don’t know,” I answered, in the same way my kids answer me when they get caught misbehaving.

Amy shook her head and laughed. “Well, you’re in trouble now,” she joked. At least at the time I thought she joked. I was wrong. “We’ll have to tell Dr. R tomorrow. Did you hurt yourself?” Turns out I had scraped the bottom of my chin. It was bleeding a bit. Amy went to get a band-aid. She came back with a band-aid and something else. It was a white strap, a belt really. “Sorry, Katie, but we’re going to have to put you in a Swedish. It’s protocol whenever someone gets out of bed when they’re not supposed to.” This is what she had:

She belted me into the bed and explained that it was locked and that I couldn’t get out unless they unlocked me. Are you f-ing kidding me? Amy left with apologies. I know she really felt bad about having to do that to me. Amy was one of many awesome nurses, she would joke about finding me on the floor for the rest of my stay in Rehab.

A few minutes later, Matt and the boys arrived. “I tried to call,” Matt said.

I pushed aside my blankets to reveal my brand new Swedish belt. “I know.” I told him what happened. “I’m in trouble. They might kick me out of Rehab. What are we going to do?”

“Bring them cake?” Matt suggested. Excellent plan. I knew there was a reason I married you. He took out the little store-bought cake and I had a sudden flash. It’s my kid’s 7th birthday and he’s in a hospital room with Frankenmommy. This probably sucks for him. I apologized to him. He said it was okay and told me about his new bike, a 20-inch bike, the big time. It would be many long weeks before I saw him ride that bike.

Matt and the boys went down to the Nurses’ Station with half of the cake and Matt apologized for my antics. Later, I talked to my mom on the phone and told her the whole story. I can’t remember if I laughed or cried. I don’t think I did either. By that point, I was just numb. I can hit rock bottom any time now. Really, any time.

 

 

Deficits

After my frightening weigh in, I was taken back to my room to wait for my first therapist. So that’s why the wheelchair is so uncomfortable, I’m a skeleton.

The first day of Rehab is rough for anyone. By the end of my three and half week stay, I had figured this out and made it my “job” to prep a new patient for that whenever I saw them at breakfast. “Is this your first day?” I would ask. At the nod and deer-in-the-headlights look, I would tell them, “it might be rough today. They are going to be cataloging your defecits.” Deficits. A common term in the Stroke/Rehab community and one that I have come to loathe. I went out of my way to warn other patients because no one warned me. No one told me what that first day would be like. That first day falling on a holiday weekend, when the Rehab ward was staffed with “fill-in” therapists compounded the problem. The therapists who did my initial evaluations, had no long term investment in me. They would see me once, maybe twice and that was it, whereas when I was matched with my long-term Physical Therapist, Occupational Therapist and Speech Therapist on the Tuesday after Memorial Day (which would have been the 29th in 2012), they quickly became invested in creating a rapport with me, knowing we would be spending hours together almost every day. I did see these first-day therapists again in passing, usually on Saturdays, but never worked closely again with any of them. It doesn’t mean they didn’t care. It doesn’t mean they weren’t excellent at their jobs, just that they had no chance or inclination to form any kind of bond with me.

Although the day left a long and devastating impression, I don’t remember much of it, but I have at least one memory of each type of therapy. For Occupational Therapy, which came some time that morning, I remember being taken to the Therapy Room by a lovely young blonde with long Rapunzel-like hair. By the time we got down the hall, I was extremely uncomfortable in the wheelchair. I told her I had just realized I had lost thirty pounds and so she offered to get me out of the wheelchair and let me sit at on one of the Rehab tables (like the padded exam tables in a doctor’s office). There was someone else there, too, probably an assistant who stayed in the room and floated between the therapists. I remember the full time assistant Germaine very well, but that’s not who was there this first day. Anyway, they moved me so that I was sitting on the table (clinging for life is more like it) and put a piece of poster board in front of me. The blonde told me we were going to play Memory. Groan. I have three kids and a freaking PhD. No thanks. But it did not appear I had a choice in the matter. She began to lift up flaps on the poster board, so that I could see them and memorize them. Then she lowered the flaps and told me she wanted me to reach with my left hand to open the flaps and match the cards. No problem. PhD. Well, small problem, left arm doesn’t move. At all, apparently. I told her as much and she said she would help me move my arm if I told her which flap to lift. I tried. I really did. I couldn’t make the game work. I couldn’t remember ANYTHING. I felt the panic creeping in. What the HELL is going on?

I was suddenly dizzy and exhausted. I told her I was afraid I might faint. Suddenly, I was lying back against the assistant, while the therapist tried to get me to just tell her which flap to open. So tired. Even conveying which flap I meant was harder than I anticipated. I didn’t hear the term “left neglect” for another day or two, but that was part of the problem. Eventually, the OT relented and took me back to my room. She brought me an Ensure to drink and told me that there was something called an “endurance schedule” that they could implement on Tuesday, if I still couldn’t make it through all of my sessions.

Sometime later that day, I had a Physical Therapy session. I was ready to stand. Ready to WALK. Ready to be out of this wheelchair that was killing my butt. “Ok,” the PT said, “we’ll get the grocery cart.” Turns out grocery carts are common props in Rehab units. She (I think)–I’m still so trapped in my own impressions of this event that I don’t for the life of me remember whether the therapist was for sure a man or a woman–brought over a grocery cart. She helped me to place my right hand and my “claw” (as I refered to my left hand) on the handlebar and then she lifted me into a standing position. I was wobbly and terrified, balancing almost completely on my right leg.”Fix your posture,” she instructed. I didn’t know what she meant. She tried to tell me and I tried to adjust. “Fix your posture,” she said again, sounding frustrated. I had a vague impression of being hunched over the cart, so I tried to straighten, but I didn’t succeed. The therapist sighed and lowered me back into the wheelchair. “Sit up straight,” she said. I did, at least I thought I did. “That’s not straight,” again I could hear the annoyance. I tried to fix whatever she was talking about. It didn’t work. “I’ll be right back,” she said. She returned with a full length mirror on wheels and turned it towards me. “Look at your posture,” she said. Oh. My. God.

My heart stopped and then it broke. I hadn’t seen myself since the day of my surgery. Now I did. Now I saw the bald, stapled wraith that I had become. Hunched like Quasimodo and leaning perilously to the left. The left side of my face was stiff, too. I really WAS the bride of Frankenstein.

Later (or maybe it was before, I don’t remember the timeline exactly), I went to Speech Therapy. In Stroke Rehab, Speech Therapy covers far more than speaking. Some people may have difficulty with the physical act of swallowing or speaking and that, of course, falls under Speech Therapy, but so does most cognitive rehabilitation. Of all the part-time therapists I met on Saturday and Monday of that long weekend, this is the only therapist I remember by name, Andrea. I wish it was for a good reason.

I had seen Andrea once already that day, in the morning. There was small talk (I think she was evaluating my actual speech abilities). We talked about her two junior high-aged children and I told her about my boys. I liked her. We did some worksheets and I believe I started babbling about being a PhD, a professor and straight A student. I’m sure I was annoying in my repeated assurances that I was “normally” smart. The matching game in OT had rattled me and the worksheets in Speech were equally frustrating. I couldn’t make them work. I think I asked her if she could “give me partial credit” for what I got right or “put a star” by the ones I did well. Again, totally annoying, I’m sure. She said she would think about it and tell me that afternoon.

The afternoon session came and Andrea sat down. She started by making sure that I understood that she wasn’t really going to be my Speech Therapist because she was a part-time worker who only came in on weekends and holidays. Then she went on ” . . . and that’s just as well because I find I don’t really like you and would have trouble working with you. You need to see a psychiatrist. We have one on the ward. You are too much like my grade-grubbing, perfectionist daughter needing constant reassurance.  You will work better with someone else.” Oh, YES, she did say that. And then what little was left of my pride shattered into a thousand pieces and I began to sob in my wheelchair. She gave me a kleenex. A few minutes later, she wished me luck and pushed me back to my room. I can remember trying to relate this story to Matt later that afternoon and he said “she couldn’t have really said she didn’t like you.” She did. She really did. You have to speak plainly to people recovering from brain injuries because we miss nuances, so I think she did just that.

Later, they had to cath me again because I still couldn’t pee. I finally got “a shower.” A shower at that stage in my recovery was more like a car wash. They put me in a gown and a “special” wheelchair. It was a wheelchair with a toilet seat in the middle and nothing under it. Then I think either Chaltu or Melinda (one of the techs) took me to one of the shower rooms where she proceeded, in the nicest way possible, to hose me down like a car, including my “undercarriage.” They didn’t even remove the gown completely. They couldn’t shave my legs or under my arms since I was on blood thinners (the Lovenox). The hair in both areas had been growing unchecked since May 7th, the day before my first surgery. Shudder. They also weren’t allowed to get my itchy stapled head wet, so no relief there.

Then, she took me back to my room and put me in a gown. I’m pretty sure Melinda took my handful of belongings to wash that night. Meanwhile, I lay in the bed, humiliated, ashamed and sobbing. What will happen to me? Matt can’t take care of me like this. I can’t take care of the kids. I’m just a burden. They should put me away somewhere. I’m sure it sounds whiny and defeatist, but that’s the space I was in that night. Chaltu came to bring me my night meds and found me crying. She quietly stroked my back for a long time. God bless her. Sometime before it was time to get up again, I finally fell asleep. It had been a bad day.

The Breakfast Club

I had intended to write an account of my first day in Rehab, but it’s already almost 9pm and I’m exhausted from a day outside and still have kids to get to bed. This is also one of the more difficult subjects to write about, so I’ve decided to split it into two or three entries.

I didn’t sleep well that first night in Rehab or any night that followed and morning comes very, very early. Shift change is at 7:30am, so the night nurses started waking us up around 5am, so they can get everyone dressed and ready.

I think it was Chaltu that first morning, Saturday, May 26th. I remember laying like a slug as she stripped me down and tried to wrangle the same yellow university sweatshirt from yesterday back over my head and arm. Then, she called in the tech for the “2-person-transfer” and took me to the bathroom, placing me on the toilet. It had been all night. I needed to GO. I waited. And waited. And waited. Nothing happened. “Do you feel like you have to go?” she asked. I nodded, sure my bladder would burst at any moment. Still nothing happened. “We’ll have to cath you,” Chaltu said.

And then I got a crash course on what that meant as they moved me back to the bed and “cathed” me using a single-use kit as opposed to the kind I had after surgery. “You might have a UTI, a urinary tract infection, it’s common after having a catheter for a long time.” Chaltu said. “We’ll get this tested.” I think I nodded numbly. Not good. This is not a good sign.

They put me back in the wheelchair and the tech pushed me to the “Community Room.” There were tables and other patients all pushed up to them in their wheelchairs. “You eat meals in here together,” someone explained. Ah, kind of like camp. I looked around. A tech was passing out breakfast trays. Someone noticed I was new and asked if I was in “swallow group.” What are they talking about? Alright, readers (you know which ones you are), get your minds out of the gutter.

“No, she’s fine,” the tech pushing me in said. She pushed me up to the middle table where there were two other patients also in wheelchairs. The man next to me introduced himself as Robert. “What happened to you?” he asked.

“I had a brain tumor,” I replied. I didn’t say I’d had a major hemorrhagic event because, at that point, I still hadn’t quite put together that it was the major hemorrhagic event during surgery and not the tumor itself that had left me how I was.

“I had a stroke,” Robert said. “Get out Wednesday. When do you get out?”

“I just got here,” I said. “I have no idea.” The staff was buzzing around us, passing out trays.

“Do you want a towel?” they offered. I wasn’t sure how I was supposed to reply, so I watched the other patients. When a patient accepted, the tech wrapped the towel around them kind of like a salon-cape. It took a minute to process that it was going to act like a bib. A big giant bib. I declined the cape-bib. They uncovered my breakfast and I set about trying to eat. The woman sitting across from me, a friendly grandmotherly type, introduced herself as Billie and told me she’d had a stroke. “How old are you?” she asked.

“Thirty-six,” I answered, realizing I was by far the youngest person in the room.

“You need to meet Lily. She’s 32. I think she had a brain tumor, too. She has a new baby.”

And suddenly, thoughts of sitting Indian-style on my hospital bed with Lily, whoever she was, chatting about our brain tumors filled me with an amazing hopefulness. This Rehab thing is going to be great. It will be just like cheerleading camp in high school. 

They wheeled another patient up to the table. She was about Billie’s age, whipcord thin with oxygen tubes in her nose. “Good morning, Lilian,” Billie said. Wait, I thought they just said Lily was 32? Turns out I had landed among Lilies.

“Know what my usual breakfast is?” Lilian said in raspy voice with a Southern accent.  “Coffee and a cigarette. They told me I can’t smoke no more. Took my cigarettes away.” And just like that, I had my new best friends, Billie and Lilian.

We ate, or tried to eat. There were packages that needed two hands two open, bottles and cream for the brown coffee-water. The nurses and techs moved through and opened things as they went. Then the nurses brought each person their morning pills in a cup. I didn’t recognize most of mine. “Keppra, antacid, stool softener,” the nurse explained. “I’ll be around with your Lovenox in a minute.” Groans sounded from all over the room. What’s Lovenox? I found out a minute later. Lovenox is an anticoagulant that they give people who are mostly immobile to help prevent blood clots. It’s given as an injection. Into your belly. Comparing Lovenox bruises every morning in Rehab became, I imagine, like comparing tattoos in prison.

“Too bad you came in on a holiday,” Robert said, “you won’t meet the real therapists until Tuesday.”

“I’m just happy to finally be doing something,” I said, still caught up in my cheerleading camp optimism despite my newly bruised belly.

They told me the therapist for my first session would come get me in my room and started to push me back that direction, I was happy for the break because my butt was already sore from sitting in the wheelchair for the past half hour. “Wait!” a nurse called. “It’s Saturday weigh-ins.” They pushed me over to a square and stopped. I was trying to figure out how I was supposed to get out of the wheelchair to get on a scale when they said “already done, we just subtract the weight of the wheelchair. You’re all set. 92 pounds.”

Holy shit. “92 pounds? I weigh 92 pounds?” The nurse checked her math and nodded.

“What did you weigh before?”

“I think about 123?” I said, still floored.

It was May 26th. Between May 3rd and May 26th, I had lost over thirty pounds.