Breathe

Many things went right today.  I remembered, almost at the last minute, my photo ID and insurance card for my doctor's appointment.  I was able to drive my power chair in a nice straight line long enough to get in and out of the transport vehicles that assisted me.  The front of the building housing the cancer clinic was splashed with beautifully colored tulips, and the sun was bright and warm.

My chemo doctor is not in a hurry to begin any kind of chemical therapy, and this is a good thing.  We need to give the radiation time to complete its work, wait until May to do follow-up MRI imaging, do new blood work to confirm and learn greater detail about the nature of my blood clotting gene mutations, and then begin to evaluate whether chemical therapy is the appropriate next step, and which chemical to use.  I confirmed that there may be other drugs besides the frightening Avastin that we may end up considering, although I had to be honestly informed that with my tumor, considered a member of the sarcoma family, these other chemicals are often not as effective as desired.  I also confirmed that my doctor, who I very much like, is not a resident on rotation who will move on to some other field in a few weeks, as sometimes happens when you see physicians at a teaching hospital.  He is in charge of the other doctor I also see at the cancer clinic and he is with me for the whole journey.  Together he and I are in charge of my care, we are like co-captains of my Hematology/Oncology team, and I have great confidence in him.

There are challenges in any day, and this one was no exception.  In the past 24 hours my urinary tract infection, which should have been completely resolved by now after a week on antibiotic, has raged into an out-of-control pain monster.  For most of the past day I have rated my abdominal and urethra pain at a 6 on the ten point pain scale, and for a person of my pain tolerance to rate pain above a 5 is quite significant.  Above 5 means tears and begging for stronger pain relief, and indeed I have been.  A sample went out this morning, and I desperately hope it provides answers tomorrow that lead to medications that bring me relief.  

Speaking of relief... For sheer comic relief, the universe saw fit to provide me with another humorous accident today.  While getting out of bed to go to my appointment, my legs at one point flopped over the edge of the bed and landed on the down-turned side rail (which is cushioned and didn't hurt me), at precisely the right location to crack the hard plastic dispenser for emptying my catheter bag.  This immediately released a flood of my brightly stained urine on the floor.  Thanks to the medication for my UTI, my urine looks more like kool-aid than a bodily fluid, so that was a colorful little complication in my bed-to-chair transfer process.  Fortunately with a new bag swapped out and some quick towel-mopping by my therapists we were soon back on our way into the chair and on to the appointment in plenty of time.

Coming up next:  on Wednesday my therapists will conduct a home evaluation with my husband to establish awareness of the space I'll be living in and determine the best equipment to assist me in it; I will continue to work on commode transfers and standing practice to be ready to transition home, hopefully still on the tentatively scheduled 30th of March; once home I will continue to work with my disability lawyer on the Social Security application process; in April I'll have a follow-up with my radiation oncologist, primarily to assess that all my radiation side effects are resolving without complication; in May I'll have an MRI, do lab work, and see my chemo team again.  The fight goes ever on.

Chemo

On Monday I have a consultation with my chemotherapy doctor.  Despite several attempts on my part to have one set up, I have not had any follow-up MRI imaging of my tumors after the radiation was completed, so when we discuss my chemotherapy options we won't know how much, if any, of the cancer remains to be dealt with.  So I imagine it will be difficult to make any kind of decisions Monday.  We will probably just review the options, including the terrifying Avastin, and I hope discuss whether any other less risky drugs are available, and then (hopefully) finally schedule an MRI to see what's actually going on in there before we decide.  

Cancer is something I worry about quite a bit these days.  My back hurts more now than it has at any time since the last surgery in January.  While I tell myself over and over that it's because I'm doing repetitious arm workouts every day and straining my upper body strength to its limits attempting to stand up several times a day, there is always that part of me that is afraid the pain is not muscular.  That it's from those tumors menacing their way into my spinal canal again.  That at any moment everything I've worked for so far could be taken away.  Again. 

Almost Home

This week I managed to accomplish a slideboard transfer "Min 1," an upgrade from "Mod 2" that I used to be rated.  Upgraded because I did it in front of therapists, where it counts, as opposed to in front of nursing aides last week who can't report on it.  What does all this mean?  Instead of needing two people to moderately help me by actually helping to scoot my hips for me, I can now slide from the bed to the wheelchair or back again with one person to help get the slideboard in place and then sit back and watch me scoot without hardly having to touch me at all.  This is a huge improvement not just in my independence but also on the scoring methods used by insurance to justify and/or quantify my progress and reasons for staying here.  

Speaking of insurance, it looks like they have accepted the therapists' recommendations to allow me two more weeks from the beginning of this week, setting my tentative discharge date as March 30th instead of the previously anticipated 27th.  I am excited and challenged, as there is still a lot of work physically left to do to meet my discharge goals in terms of function, but I desperately want to make that date work because I'm so ready to finally go home.  Ready, and finally feeling like I'm starting to make the kind of progress necessary to keep me safe there, and make it manageable for me and just one other strong person i.e. my husband or his dad to care for me.

In the meantime, I've got to continue advocating for my own care and comfort as well.  

Issue number one:  room temperature.  I've been trying for days to get switched places with my roommate, who is on the side of the room next to the air conditioner (and the windows) and is always cold.  I am on the side farthest from the a/c and always warm.  She can hardly tolerate even my little floor fan circulating the air in the room much less allow having the a/c turned on, and I am sweating all night long and not sleeping well.  It took two days of strong pushing and reminding of nurses to get them to seriously investigate whether we could be switched, and by that time, my once apparently willing roommate had changed her mind.  She's going home in six more days and doesn't think it's worth the hassle, but I'm not willing to spend another six days feeling hot and clammy, so once it was made clear to me that the move was being delayed (read: cancelled) because she wasn't willing to do it (this took half a day to inform me about after I kept pressing), I started pushing for a room transfer instead.  My nurse told me there was a woman being discharged today who was next to the a/c in her room, and perhaps I could be transferred in there.  Yet again, nothing ever came of it, and I will have to cross my fingers and push hard in the morning to try to get moved in there before a newly admitted patient snags the spot.

Issue number two:  diet.  This morning when my breakfast arrived it had mysteriously been converted from the regular diet selections I made on the regular menu yesterday to a rough translation of those requests on the carb-controlled diabetic diet, today's menu for said restricted diet accompanying my meal.  This seemed outrageously unfair to me, to be summarily downgraded in dietary choices despite the fact that my blood sugars while eating from the normal menu have been not only excellent but frequently almost too low, and further restricting my carb intake would surely make them even lower, even more often.  I first protested to the internal medicine doctor who visits me early in the morning, and he seemed to be in basic agreement that it was an unnecessary change but didn't really act like there was anything he could do about it.  He made it sound like the staff dietician had made the choice.  So I decided to talk to her next, and asked her if she had even seen my blood sugars, and she hadn't.  She agreed to look them over, but also indicated that she's not in control of which diet I'm assigned to, because the doctors do that, so she also said she'd talk to the doctor to see what options we might have for getting me back on the regular diet.  Seemed like a lot of shifty finger pointing to me, but by the time she checked my chart to see my awesome sugar levels, there was already a notation that the doctors had ordered me back onto the normal diet.  I thanked her for following up on it and was happy with the end result, but I still wonder who made the change in the first place.  I suspect it might have been the doctor I spoke with first, who backpaddled away from his decision as soon as he heard me protesting and citing my low sugars as cause for concern about further lowering my carbs.  It wouldn't really surprise me if he'd suddenly noticed they forgot to put me on the diabetic diet originally, and thought he'd just quietly correct it, without even consulting my chart or me to see how my sugars had been doing.  Oh well, at least it will be fixed tomorrow.

Respite?

Today I'm having to take it rather easy because I'm terribly lightheaded and get very dizzy whenever I raise my head.  My doctors and therapists are all very sympathetic about this, telling me it's okay to stay in bed and only do exercise activities as tolerated for the day.  I try to sound rational and sane while I explain to them how afraid I am of not making enough progress, never take a day off, must push push push so that I don't get sent home before I've accomplished all that I hope for and so that I don't lose any of the ground I've gained.  It's so hard to let myself take a day of rest, even if an internal infection and a powerful antibiotic have me feeling like I got walloped upside the head with a bat.

Rapid Progress

This week I moved out of the SNF (skilled nursing facility) and into a more intensive rehab hospital.  Great timing considering the nerve control gains my spine has made in the past couple of weeks, as I can now capitalize on the increased mobility with more strengthening workouts and practical applications such as slideboard transfers and practicing standing.  In fact, just today, I managed a slideboard transfer with minimal set-up assist and someone to lift my legs into the bed, with all the hip-lifting and scooting being entirely done by me and my legs.  I also tried out a different standing machine, one that makes my legs and arms get me upright, instead of helping to lift me from the hips, and what do you know, I managed to stand three times for up to 45 seconds.  It was absolutely thrilling, and exhausting.  

My goals are to be able to stand with only one person helping for long enough to get in and out of my own car and to be able to always slide transfer with only one person helping, by the time I'm tentatively scheduled for discharge on March 27.  Accomplishing those two things will enable me to be transported in my own car instead of renting/hiring a wheelchair van, and allow me to navigate from bed to wheelchair at home without having to use a mechanical lift.  As quickly as I've been progressing the past few days, I think those goals are quite realistic.  

Aesthetically, this rehab center is much more pleasant to live in than my previous abode.  The food is MUCH better, there is a better staff-to-patient ratio allowing faster response times, and I get more therapy per day than I had before.  I don't get BBC America anymore though, so no more being addicted to Top Gear and Gordon Ramsay.  Not that it matters much, as I'm usually so worn out from working hard that I sleep through any significant blocks of downtime in my day anyway.

Tantalizing neurological tidbits:  thanks to a medicine mix-up, I missed a dose of coumadin during my transfer to the new place this week, causing me to need a bolster shot of lovenox, an extra blood thinner in addition to my usual pills.  For the first time since August, I felt the prick of the needle going into my abdomen and the subsequent burn of the injected liquid.  Maybe it's not too late to recover some of my extensively reduced skin sensation after all.

And on the cancer front:  I am trying to coordinate a follow-up MRI along with my upcoming chemotherapy consultation so the oncology team will be able to see how much of the tumors are left after radiation before they try to make any decisions about whether I should take the extremely dangerous Avastin chemo course.  The more I read about this drug and it's complications in other cancer trials and the way it will potentially interact with my blood thinners, the more convinced I become that it is not worth the risk for me to take it unless my cancer were extremely aggressive or highly likely to metastasize, neither of which are currently true, from what I understand.  Fingers crossed that radiation successfully shrunk the cancer to the point that chemotherapy becomes an unnecessary course of action.

Midnight musings

Sometimes at night I have trouble sleeping.  I always used to be up until midnight anyway, so that's normal for me, but sometimes now I'm up several hours longer, thinking.  What do I think about in the middle of the night?  Take a look.

When my body finally functions well enough to roll over whenever I want throughout the night, almost without effort, will it actually remember that this is the key to comfort? Will I roll over often enough to stay loose and comfortable, or will my body, so long trapped in inability, continue to stay in one position all night and make me awaken stiff and poorly rested in the morning?

Is there an exercise bike where the foot pedals are driven by a set of hand pedals?  Then I could sit there and exercise my arms, and have it force my legs to go through the pedaling motions at the same time, until my legs get strong enough to drive the pedals on their own.  That would be cool.

How can I reach more people with my blog?  How do I promote it on the wide, wide web? How can I get the attention of publishers who might be interested in paying me to write something?  Can I somehow make a new career out of writing, while I'm working on getting mobile enough to return to office work?  I wish I knew more about marketing and outreach.

Hope is a little scary.  I've made so much progress in such a short time the past few weeks, it opens the doors to bigger and greater possibilities in the future.  But I've been shoved back down so many times, it's frightening to get too optimistic.  Could I really possibly stand unassisted in a couple more weeks?  If I can someday stand, could I really possibly walk again?  Do I dare to dream of such things, set myself up for that kind of disappointment?  If I lost it all again tomorrow, as I have before, would I survive it again?  Could I start over one more time?  I hope I don't have to find out.

How can a show about cars, which I don't exactly find fascinating as topics of conversation or interest, be so darn addicting??  I am totally in love with Britain's TopGear.  It's funny, full of beautiful cars, entertaining cross-country race challenges, and makes me actually pay attention to the performance differences between Mercedes and BMW, between Ferrari and Lamborghini.  Most importantly, though, it makes me laugh, and stop thinking about my aching lower back or my exhausting quest to relieve pressure on my sensitive skin.

Does my husband lay awake at night missing me like I miss him?  I think sometimes he does.  Of course, he has plenty to keep him busy when he can't sleep or is lonely for me.  Lots of laundry to keep up with, the housework, etc.  But I know he misses me while he does those things, and while I lay here watching the same programs repeat on television, I miss him terribly.  He's my best friend, and every afternoon that he spends with me, even if we just sit here holding hands, even if I fall asleep and just know subconsciously that he's still here beside me, every second that we spend outside watching the rain together, are the best moments of my days around here.  Sometimes when I can't sleep I'm thinking of him, from the way he smiles at me, his playful teasing, the dedicated way he exercises my legs, to the way he won't put up with me being neglected, the ferocious way he defends and cares for me, and the way he breaks sometimes, burying his face against my infuriating legs to hide his tears of joy at the way they move now even when I'm still raging about what they can't yet do, and with those thoughts of him, I weep until sleep finally finds me.

I love the sounds of the outdoors.  I keep my window open all the time, even when it is (gasp) sometimes a little too chilly for me (yes, it's true, even I get a little cold sometimes).  I like to hear the rain fall, the pattering on the leaves, their rustle when the wind blows.  I like the sights of it too.  I like to sit outside in my wheelchair and watch the clouds march across the sky, the sun disappearing and reappearing amongst them like it's too skittish to stay out in the open, the movement of the wind through trees and grasses and leaves, the passing by of cars and of visiting people.  Remember in Phenomenon when Travolta's character, tormented by the onset of an intense intellectualism he couldn't shut down, would stand and gaze at the wind in the branches, swaying gently until he calmed down?  I absolutely get that.  I wish I could go out in the middle of the night when I can't sleep, the way I used to go for walks in college all over campus in the dead of night.  Then I would find peace, and be able to sleep.

And these people wonder why I'm so sleepy in the mornings. 

A present to myself

Yesterday was my birthday.  I had many wonderful gifts from people who mean everything to me.  Tasty treats, quality time, hugs, chats with loved ones far away.  Today I gave myself a present, the culmination of weeks of effort and straining and pushing my muscles and nerves to their last.  I rolled onto my side in bed, unassisted.  Not halfway over, my shoulders and upper body following the commands of strong arm muscles and leaving my unresponsive hips and legs behind.  Not this time.  My whole body rolled onto its side, my knee bending up to help lift my leg and drag my hip upward with it until I was completely rolled over.  In fact I almost rolled far enough to have my top leg fall off the edge of the bed, and then I did it on the other side too.  

It's an amazing kind of freedom, to be able to roll over in bed without waiting for someone to come and help you.  No more agonizing minutes watching the clock or trying to distract myself from the frostbite-like fire in the backs of my legs when the pressure gets to be too much, waiting what seems like insufferable lengths of time for an overworked staffer to come roll my hips; now I can just turn over when my skin needs a break, all by myself.  In that moment, when I showed off my new skill to my therapist so she can document it for the all-important insurance review, I was on top of the world.

Kind of like how I felt when my husband relayed a conversation he had with our son.  Given a choice between going straight to his grandparents, where he could play with his sisters and watch TV or play on the computer and hang out with his grandpa he adores versus visit mom at the boring nursing home full of old folks and strangeness, he immediately chose to hang out with me and play Skipbo.  I cried with joy.  How I love that sandy-haired, blue-eyed little boy with his big toothy grin and his intelligent-looking glasses.  And his hugs, and fits of giggles, and the way he reads like a fifth grader, which he is tall enough to pass for, even though he's only in second grade.  He makes me so proud, and happy.  Along with his sisters, by far the best presents hubby and I could ever have given ourselves.

Tips for friends and family

I've learned a few things on this journey that might just turn out to be helpful tips for those of you who have friends or loved ones in the hospital.  They might seem like little things, some of them, but even the little things matter to those of us on the "inside" sometimes.

Your encouraging cards and notes are totally welcome.  Cards and kid crafts decorated with glitter, not so much.  A person confined to their bed does not enjoy getting their hands and sheets doused with the little sparkles with no way to wash it off.  You wouldn't believe how badly wet wipes fail at removing glitter from your hands, they just spread it around.  Try to choose greeting cards without the stuff if possible.

I debated whether to mention this, but my mother and I know we love each other and I know she'd want to know, even if it did take me forever to get around to saying something about it... Mind your tone.  Most people have a different tone of voice, a soft, reverential, sad tone they use when speaking at funerals or talking in nursing home hallways.  Mom uses hers when she answers the phone at the mortuary where she works.  The first time she called me after my cancer diagnosis, she used it on me.  My reaction was immediate and strong denial in my mind:  no! No way are you using that deathly tone with me, because I am not dying.  Eventually as the shock wore off and her hope was restored she stopped using it, but hopefully people who read this will avoid using it right from the beginning.  More terminally ill patients might feel differently about it, but for me, I wouldn't want to hear that tone even if I actually was dying.  Talk to us like we're still normal people, friends, because that is what we long to be.

The idea of a surprise visit is nice, but most of the time, a courtesy call in advance is probably appreciated.  You never know when we might be having a bed bath or trying to have a bowel movement or how long those things actually take, so to avoid wasting your time waiting and potentially knocking on the door in the middle of an embarrassing situation, go ahead and phone us first.  Besides, that gives us time to comb our hair and check to see if we still have breakfast crumbs on our gown.  They like to hide up under the chin zone where you can't really see them...

Even really good hospital food sucks compared to outside food in most cases.  Don't be afraid to ask what you can bring us for a meal or snack.  We will LOVE you for it.  Even something as simple as a 20oz bottle of our favorite soda can brighten our days.  

If you're wondering what you can do to help, consider stealing an idea from these amazing offers we've had from family and friends:  babysit the kids, fix them an easily reheated meal, hold a non-perishable food drive to stock the family's pantry, collect cash to help cover the family's travel and other incidental expenses like parking and fast food.  If your ill loved one isn't lucky enough to be married to a library employee like me, they might be in desperate need of diversion materials like books, magazines, movies, crossword puzzles, or even a pack of crayons and a coloring book so they have something fun to do when the kids visit.  I'm woefully unconcerned about make-up and fashion, but people who take a little more pride in their personal appearance than I do might enjoy an offer for a homemade manicure or a little hair styling, maybe access to their cosmetics from home or a can of their favorite air freshener.  It can't hurt to ask, and they can always check with their nurse whether a particular item is allowed in their room.

Try to be considerate of what the patient can and cannot reach in their room.  It may be fine to move something off a chair next to the bed to sit while you visit, but you'll want to try your best to remember to put it back before you go, and perhaps even ask if there's anything else they need but can't get on their own.  Invariably I will remember five minutes after my nurse walks out the door that she just set my long-reaching grabber on the other side of the room so she could reposition me in bed and now I can't reach anything.  It might be an hour before someone has time to come back in and hand it to me.  So while you're visiting, it's really helpful if you prompt me to remember the half dozen things I've been mentally listing to ask someone to help me get the next time they come in!

Sometimes we just get emotional.  This can be a bit awkward to observe, and even more awkward for the one doing the crying.  Since it has worked on me, I might suggest trying to gently keep us talking about pleasanter things for a few minutes.  Often a kind staffer has been able to steer me onto a more happy topic so that I could recover my emotions, regain some dignity, and still enjoy a nice conversation, leaving me the ability to save my tears for a more private moment.  If this doesn't work within a few minutes though, it might be time to ask if the patient would like you (if you're willing) to just sit quietly with them while they let out their feelings, or if they would prefer you to give them some alone time and visit again another day.  Whatever choices your comfort level allows you to provide, they will likely appreciate being given the options.

I've found that flowers do as much (or more) to lift the spirits of the staff as they do of the patient.  Arrangements don't have to be large or pricey, in fact smaller ones are easier to find a place for in the room and some of the less expensive ones often live longer than expensive, powerfully-scented roses.  Speaking of scents, remember your loved one lives in a small room, so a little flower fragrance goes a looong way.  If a flower smells strong in the store, you probably don't need more than 1-3 of them, not a dozen.  Staffers also love baked goodies or the occasional bag of candy, it seems.  Maybe patients, too...

Above all, remember that it's always the thought that counts, and your loved one will remember that too.  Don't feel bad if you didn't think of some of these things, and please, feel free to add tips of your own in the comments.  Including tips for how the patient can help their friends and family!  What do you most wish we would communicate to you?

It's What We Tell Ourselves

I don't know about you, but when I got my cancer diagnosis I spent pretty much a full day in outraged shock and tears.  Not too long after that though, I started figuring out that there were some pretty important things I needed to tell myself in order to survive the situation - things that may, or may not, be true, but are essential either way.  

One of the first turned out to be pretty true:  radiation is no big deal.  I had several cancer-survivor friends tell me this, but you can never be sure whether they are just trying to make you feel better or how well your own radiation treatment experience will go.  Mine went about as great as they can possibly get.  I completed my 28 treatments last week, and got away with only extremely minor esophagitis and almost zero skin discomfort.

Another one starting coming up almost as soon as I turned the TV on:  suddenly every Cancer Treatment Center and breast cancer walk and malpractice lawyer commercial carried frightening new significance.  Suddenly I'm a cancer patient, with all the terrifying unknowns that comes with, like would it metastasize, could it kill me, would it make me look sickly and weak to my children, would my hair fall out?  And immediately, to protect me, almost without me even realizing it was happening, my brain drew a hard, thick line between the two kinds of cancers that previously I hadn't ever bothered to separate:  the kind of cancer I have, along with other mild or tolerable cancers like totally operable skin lesions, and then the group that became known in my mind as "scary cancers that can kill you."  Because it was critically important to make myself believe that the kind of cancer I have is NOT a scary cancer that could possibly kill me.  I don't actually know how true that may be, and I'll admit, I don't want to know.  What matters is I believe it.  It's reinforced daily by silent affirmations like the way I don't look sickly yet, I'm growing stronger, not weaker, and there are no outwardly visible signs of any metastases.  

Those are some of my sanity-saving self-promises (I refuse to call them self-delusions).  What do you tell yourself (or your loved one) to get through the challenges you face?

My kind of Sunday peace...

What a tranquil day.  After being up till early morning thanks to a loud new dementia-afflicted neighbor in my hall, I got to spend the morning catching up on sleep while holding hands with my wonderful husband.  In the afternoon I had a pleasant visit with good friends, then got up in my power chair and headed outside.  The sky was blue and studded with fluffy wet-looking clouds scurrying toward some distant rain engagement.  The wind that drove them sent the light carpet of dead leaves around me swirling off to every corner of the quiet nursing home property, and for a half hour of child-like joy I chased the leaves with a flurry of glistening gems from my delightful little plastic bubble wand.  

I stayed out as long as possible, until the goosebumps spread from my arms to every part of me that still feels enough to get them, until I almost couldn't stand the chill anymore, which conveniently was right about the time my hubby arrived to help me back through the double doors and drop me off something edible to eat instead of the SNF (Skilled Nursing Facility) chow.  I asked him to bring my jacket to me soon so that next time I can stay out in the fresh air even longer.  I crave those moments of quiet, of joy, of being outdoors and feeling the wind and the sun touch my skin like the embrace of an old friend, of remembering the oneness of my little self and the wide world of nature.  Those are the moments that replenish my wild spirit, when I reconnect with my faith, renew my will to fight, and unleash my pent up frustrations in little bursts of laughter and smiles, so that I release positive energy instead of negative, so that only positive energy can return to me.  What you send out into the world comes back to you, we say.  

As a result, tonight I am relaxed, thankful, and hopefully have my compassion refilled enough to view my hollering neighbor with pity and forgiveness instead of anger.  Or at least with my mind cleared enough to stay calm and quiet while I hide the body.

I'm kidding!!!  Sheesh. You really need to relax.

Catching up - on rants and raves both

As of this writing, offline, it's been another four days without internet access.  Yet
another frustration with this place, this situation.  This morning they handed me a packet
of admissions paperwork to sign, and told me to sign all the highlighted places, and not
fill in anything else, even the dates.  The pages are numbered in such a way as to reveal
the packet is supposed to be 93 pages, but what I have represents maybe a third of that;
it's all the signature pages, but not the actual body of any of the contracts, policies, or
terms with which I'm supposed to sign my agreement.  I don't know what kind of mentally
incapacitated patients they are accustomed to dealing with, but they are the ones who are
crazy if they think I'm going to sign a bunch of documents without reading the agreements
first, or allow them to fill in dates and information above my signature without me knowing
what they are going to put there.  I won't allow my signature to be backdated and I won't
sign blank forms and have them fill in data above my signature after the fact.  If they
needed these documents signed on my admission date they should have given them to me two weeks ago.  So there might be some interesting fireworks tomorrow morning when I discuss these issues with the admissions paperwork lady.

Speaking of fireworks, there was an unannounced fire drill this afternoon.  There's nothing
like blaring alarms and your room door slamming shut without warning to make a
claustrophobic person feel right at home and at ease.  Especially since I'm incapable of re
-opening my room door while in my power chair, like I was this afternoon.  Then there's the
fact that if I'd been sitting a little closer to my door, like I often do, it would have
slammed into my leg when it closed.  I was astonished to find out it was a fire drill, and
that the doors all close automatically in the event of a fire.  We are literally locked in
our rooms - supposedly to prevent us from wandering into the fire area accidentally - and
are evacuated one room at a time, although they didn't actually practice the evacuating part
today.  Between the hours of 10pm and 6am there are only about 7-10 staff members here, with upwards of 100 patients.  So yeah, if a fire breaks out in the middle of the night, I'm
quite certain I will spend at least an hour stuck in my bed with a sprinkler raining down on
me before finally being evacuated, assuming the sprinkler comes on automatically, and that I
don't expire from smoke inhalation or burns before my turn to evacuate comes up.  Rather
melodramatic and pessimistic musings, I know, but that's the sort of direction one's mind
can take when confined to a chair and a room in which you do not want to be.

On the upside, we've made some terrific progress in therapies lately.  A few days ago I
regained flexion in both knees, meaning that I can now retract my legs by bending them at
the knee after extending them outward.  This is huge because I haven't been able to do that
since the new nerve damage addressed by the surgery in early January.  This could be a very encouraging sign that nerve fibers in my spinal cord are finally beginning to heal.  In
addition, I was able to extend my tolerance in the standing machine considerably this week,
standing for two whole minutes at one time and a combined total of four minutes during
today's session, during which I flexed my legs straighter beneath me - increasing the amount
of my weight they were bearing - over twenty times.  I don't mind telling you that the first
time I stood in the standing machine I cried with joy, and today I almost cried again, from
pride and excitement about how long I managed to stay up.  And from the incredible pain in
my left shoulder, but that's not the point. 
 
That was a few days ago, and since then I have additionally regained flexion in first the
left and then the right ankle, so that now I have completely recovered all the nerve control
I had in December.  This means my skin is still mostly numb from the heart level on down,
but at least I've got control of my lower limbs again, and just need to continue building
strength in them until I can stand again, and eventually walk I hope.  These signs of nerve
healing in my spine are extremely encouraging and bolster my spirits tremendously.  It's
almost enough to make me overlook the chronically understaffed situation here, where I
routinely wait over an hour for what are, to me, critical services such as being turned to
prevent pressure sores or being moved from the cramped and painful sitting position in my
manual chair back to bed after a tough afternoon of working hard at therapy.  The staff,
mostly nice and competent people, are apologetic, and I blame the administrators, not them,
for creating a situation in which they can't possibly care for everyone in a timely fashion,
and for not establishing care priorities so that persons at high risk for pressure sores and
expressing great pain and discomfort get moved ahead of people who want nothing more than to be wheeled down to the dining room for another day's disgusting dinner.  I've been sick to my stomach and suffering from diarrhea for days, and I barely touch the food here, I can't imagine why any of them are in such a hurry to go eat it!