Sunday, December 30, 2007

Released from Rehab: Realizations and Appreciations

I came home yesterday from the rehabilitation hospital where I spent 8 days after my release from the intensive care area of the neurological unit. Before surgery, I took some comfort in the idea that I knew what to expect when I woke up from anesthesia, but surprise, surprise, surprise... They have a whole 'nother row of rooms around the corner and down the hall from my old stomping (with a walker) grounds. I knew something was different because of the strange blue color scheme, the absence of tepid watercolor artwork on the walls, the presence of a lot more medical equipment, no private bathroom, and windows looking right out at the nurses' station. Also a lot more beeping noises, whirring noises, whooshing noises. A lot more attention, day and night. A lot more tubes, monitors, and observation of my body from machines and humans dressed in scrubs. More latex gloves.

Still, the increased scrutiny of the intensive care area was like a private retreat compared to the rehab hospital, where I had a roommate and where the nurses came in regularly to turn on the neon lights when they checked my vital signs, administered medications, and seemed a bit more eager to stick a suppository up my a** than I liked. For the first night, I had a bed alarm that shrieked when I moved, bringing running footsteps down the hall to see if I'd fallen out of bed. I was not permitted to go to the bathroom or shower alone. I had the most intense physical workup I've ever had.

After I was trained to use my wheelchair in physical therapy, I wheeled about the hallways and learned that I was in the Lock Down portion of the hospital. I had to work for several days to prove that I was cognitively adept enough to come and go. Eventually they figured out I wasn't a flight risk, and I began to have the run of the place; I could just wave down the hall to the nurses' desk and someone would let me out without coming to check my wristband and consult a list.

I went to my scheduled occupational and physical therapy sessions, and stayed for an extra hour when my strength and endurance allowed. I wheeled myself around the halls and graduated to a walker and then a cane. I sneaked into the bathroom when people weren't looking. The day before I left I finally got to sit in the shower all by myself.

I asked for early release because after being there for Christmas, I just didn't want to stay for New Year's Eve. I know the chances are slim that I'll attend a princess ball tomorrow night, but at least I might be able to get a midnight kiss from my sweetheart without feeling sneaky and guilty.

I was chastised for having a male guest lie in my bed with me; it is against policy, if the patient has a roommate, to lie in bed with a visitor (or presumably another patient). We had to take refuge in the cold, echoing hallways late at night, wheeling around and around, trying to find a comfortable place to whisper furtively. I couldn't sit up for more than a few minutes and there were no couches or lounges where patients could entertain visitors. So even the comforting touch and words of the man who loves me were circumscribed pleasures. There was a lonely sense of deprivation in that set of circumstances. Junior high dances and school field trips should have such effective chaperones.

Yesterday, I took a taxi home and showered in my own bathroom and crawled between the crisp, clean sheets of my own sweet broad bed. S came over to hold me and kiss my face in a way he hasn't been able to do in weeks. I cried with relief and appreciation for the small but priceless experiences of autonomy and human dignity that are sacrificed in the relentless quest to achieve the basic level of physical ability to be without 24-hour nursing and physical supervision.

It's a double-edged sword. Being presented with three square meals a day wheeled up to the bed, swallowing the pills brought to me every four hours relentlessly, people standing ready to prop me up or move me off the toilet or catch me if I fall, regular checks of pulse and blood pressure and heart and lungs and bowel function, supervised physical therapy, and exquisite attention to my physical safety were essential, I must concede.

I can hope (and I made a huge bet on this) that the benefits of home will have their own role in my healing. Long stretches of uninterrupted sleep; the privilege to use the toilet in privacy; having a nice long hot shower with my own fragrant soaps, lotions and balms; the comfort of my own jammies against my skin; being able to cry whenever I want, as loudly as I want, for as long as I want-- those have their place in this journey towards well-being. There is no room for that in the critical care wards. Enjoying the benefits of an adult romantic friendship without illicit feelings about accepting even non-sexual human touch is as vital as anything else, but its value can't be quantified and recorded in the medical charts.

In any case, I'm home now, but still require enough assistance that I may be carrying out many of my days in the homes of others until I can TRULY take care of myself. I don't know how often the home health team will be here to check on me, or when I will graduate to out-patient physical therapy. Not even the most seasoned physician can give me a timeline to predict when I will be able to stop taking medications that blur my concentration and make me have to decide if other nasty side effects are really worth putting up with in order to have pain relief. No one can tell me that I'll be granted permission to drive my own car in X days/weeks. No one can even make the foggiest guess about when I will be able to take up the duties of motherhood for two little kids.

The rehab center provided a mental health counselor as part of my treatment team. That was a good thing. He gives patients the tools to deal with the difficulties I've just barely begun to describe. Some of the residents of that hospital are counting their stay in terms of weeks and months instead of days. I'm one of the lucky ones.

My roommate cried when I said goodbye. She said I had inspired her and that she hopes her next roommate is half as nice as I have been. I cried when she said that, and bent awkwardly to give her a hug. Having been there for over a month, she has seen several people come and go, as she stays to carry out her valiant fight to recover. I was choked up as I tried to explain that SHE inspired me. I saw improvement in her condition over my 8 or 9 days there. She taught me that we must celebrate even the most minute improvements when we are this ill, this helpless. She showed me what courage looks like.

I weep to think of her there in that room, trying to maintain a positive attitude as she succumbs to the indignities of spilled bedpans and anxiety and having to be turned and medicated and cleaned and fed on a schedule by harried but caring nursing staff.

I am so glad to be free of the experiment in human indignity that is the hospital gown. I'm glad to look forward to beginning a new year from the vantage point of a couch or "real" bed instead of the mushy, narrow, bending hospital bed with its rails and buttons and sticky undersurfaces. I would like to dump that all-purpose hospital soap/shampoo/body wash down the sink so that in a few weeks or months I won't open a bottle to take a whiff that will lead instantaneously to the nauseating physical memories of the health care institutions.

I am challenged, even in the comfort of my home. Perhaps I had some unreasonable, subconscious expectation that when I got home, I would be BETTER. I have to remember the glory of the small daily improvements I'm making. I must not succumb to self-pity, at least not in the company of my friends and family. That would be too much for them to bear and it's quite pathetic and an antithesis of the healing I am striving for. I must leave the laundry to pile up, leave the dishes in the sink, leave things on the floor when I drop them, and be satisfied with giving them a little kick or poke with the cane to keep them from being tripping hazards.

I have to stand by helplessly if winter frost warnings are issued. I am as unable to help my garden even from here as I was in the hospital these cold weeks. I laughed with a friend yesterday that if the plants I lovingly planted can't hack it, then they can just give up and die. Nothing that isn't strong and hardy can stay around this household, for the time being. If I lose the plants that I spent all that money and energy on from planting to harvest, then I'll have to take solace in the memory of the pleasure I had at each moment when I was well enough to engage in the luxury of working in the garden. Only the persistent, tenacious and indefatigable may continue in my company until I can be well enough to tend to things weaker and more needy than myself. We're all in this together.

I am happy to report, after weeks of neglect, that my garden grows without me. Some of the plants are going to hold on, even thrive in these challenging desert conditions. I plan to do the same thing.

If life is a race, am I taking a pit stop?

Thanks to Agathon again for this: http://agathon-sbh.blogspot.com/2007/12/reason-312-to-slow-fk-down.html

Thursday, December 13, 2007

Value

I'm about to start my fast prior to surgery and I'm weary, but I have to post yet another link to Scenes From a Broken Hand because... well, you'll see. Check this out: http://agathon-sbh.blogspot.com/2007/12/free-lunch.html

Twas the night before surgery...

...and all through the house....

thought I'd come up with a clever little poem to honor The Night Before Christmas, or perhaps dishonor that old favorite from Christmas past.

But I just ain't feelin' all that perky or creative this evening.

My sweet friend KS accompanied me to pre-operative testing yesterday, so I didn't have the same kind of emotional breakdown I've had the last two or three times I've gone in for blood draws, chest x-rays and EKGs, weighing and measuring and intensive interview about medical history and medications.

Of course, I may have skipped the Reality Check, that moment when I have to face up to the fact that this is really going to happen... AGAIN. Maybe that painful moment isn't really necessary; I know for sure that her gentle presence was the best possible medicine. I come to tears of gratitude to think that she flew in from Portland and made her way here to help me through this.

As the two of us negotiated the little gauntlet, the techs laughed as I waved away their detailed explanations and directions and even stated my name and birthdate upon presenting orders for each proceedure. "I guess you know the routine," they shook their heads.

The nurse plunked down a big ol' chart about two and a half inches thick and got ready to add the new forms to the pile. This time I'd typed up my medical history with dates and details, and a list of prescriptions medications and dosages, etc. I've gotten so sick of writing all that down each time I go to a doctor that I just spent a little time typing it up and now I can present it and write "see attached" on the medical questionaires. Later I told K that this enormous chart was one of at least three; the anesthesiologist's chart is just as thick and has a blue cover. And I think there's one more for the surgery suite, or my doctor, or whoever...

As K bravely walked along beside me up and down the halls, I continued a conversation we'd been having earlier. The gist of that discussion was how everything in my life that once gave it meaning has been stripped from me: active participation in mothering my kids, my work, and many of the recreational activities I once enjoyed: gardening, hiking, SCUBA diving, Latin dancing... even reading books is beyond my capacity now.

We both worked to reassure me that healing is my full time job right now. I felt as if I was at my workplace, going through a familiar routine, taking well-known pathways through the hospital maze, knowing what to expect at every turn and simply conducting my tasks with as much efficiency as I would if I were walking a grant proposal through the university system, or something like that.

I took my friend up to the 3rd floor to see the neuro ward that I know oh so well as I face my seventh back surgery, ninth admission to that unit. I showed her the rooms I had inhabited and the fish tank and the big board where my name and room number would be posted and nurses' and techs' names would be added and taken down at shift changes. I told her, "The next time I walk down this hall, it will seem a lot longer, and I'll be using a walker, and stepping carefully and slowly like this--" and I did a goofy demonstration of what will NOT be so goofy in a few days, when I get my first walk after surgery.

One of the nurses said, "I saw you walk by; what are you doing back here?" I told her that I'd brought my friend to see the place, and said, "I'll see you Friday, just from a different angle." Her facial expression and body language said it all: shock, surprise, disappointment, sympathy...

Yes, next time I will take another elevator, and be wheeled in on a gurney, and be dressed in a loose-fitting hospital gown with my thumb poised above my PCI button... Whatever that stands for... after all this time I've forgotten or still haven't learned--the gadget that delivers premeasured doses of morphine at the touch of that magic button, with an hourly maximum and other safeguards to prevent overdose.

I've been taking morphine since July, and it's lost its efficacy in pill form, so I sure hope I hold that little device with as much hope and relief as I will need.

I'm sad and scared and disappointed and I don't really feel prepared, but what can I do to prepare, really? Each time I pack less and less in my little overnight bag, because there is very little use for most things one might think to bring, and it just adds a burden for the person who picks me up to take me home after my discharge.

My doctor told me about his plan earlier this week, and talked about the different things he might discover when he cuts me open. Before he came in, I gave K a little anatomy lesson about my condition using the rubber and plastic models of the spine--skeletal and nervous systems.

I looked at that place where all the nerves branch off to the lower body--I think it's called the cauda equinus or something like that-- and wished I could see a photo of what lies beneath my own skin and tissue in that area. Is that gross? I like to read each operative report with its detailed accounting in Latin-influenced, precise medical terminology; would it be as interesting to see the gory details for myself? A few surgeries ago I would have said, "Hell NO" and turned away with a woozy shudder. Now I'm much more intrigued, perhaps more informed, and even a little distant from the whole thing.

So... fasting after midnight, a washdown with antibacterial soap, 8:30 a.m. check-in for 10:30 surgery. By now any of you who are inclined to visit me in hospital already know the routine all too well, but here's a little info just in case: Northwest Medical Center Patient and Visitor Information: http://www.northwestmedicalcenter.com/map_dir.html

Northwest Medical Center
6200 N. La Cholla Blvd.
Tucson, Arizona 85741

Main Switchboard: (520) 742-9000

I brought my cell phone the last two times, but after bills approaching $400.00 for overuse of minutes, I won't do that again. Also, a nurse cautioned me that cell phones could interfere with patient telemetry transmissions, and I'm not about to put any of my neighbors or myself at risk, so I'll probably be incommunicado this time. I have a direct line to my room but no message service. Half the time it's unplugged so I can sleep; usually I get inundated with calls for the previous occupant. Another portion of the time I'm having some proceedure done on my body or I'm out of the room for more MRIs or for physical therapy... and since I don't know what room number I'll be in until I get there, I can't let you know the number now. The main switchboard will get you there, but won't take messages. Gosh, I guess they have more important things to do [wry grin].

I'm not very good about returning calls these days, anyway, as some of you know... But I'll try to stay in touch. No computer wireless in hospital, so no blogging from there. I really do feel as if I'm on some kind of remote retreat or in outer space while I'm there anyway. Days pass and I don't know where the time goes or what my mind does or any of that. It's so weird.

What's more weird is to be so damned familiar with all this that I guess I don't really even have to do any kind of emotional or mental preparation. I've dedicated this whole day to resting after a week of insomnia, and I'll have to put aside my To Do list for yet another undetermined length of time.

The other night MC brought me delicious homemade Tuscan bean soup with rice and spinach to add essential amino acids and iron... and a lot of treats LESS specifically aimed at my health, but certainly satisfying to reluctant taste buds. Then she took me to her parents' house where I learned to play Dominoes. Who knew that would be so much fun? They sent me home with soothing personal care items, and the happy results of a few hours' distraction from all this gloomy, morose hanging around that I've been doing lately.

My thank you card list will be ENORMOUS when I finally feel well enough to express gratitude... I hope you all know that I appreciate your help and support and contributions more than I could convey in a card, anyway...

Off I go. More in a week or two, I guess...

Wednesday, December 5, 2007

Especially for S: Music and Laughter

To my Sweetheart,

If/when we ever do get in an argument, can we do it with the mediation of our dear Beethoven?

(thanks agathon and the rest of the thread that makes this display possible)

Argument to Beethoven's 5th
Featuring Sid Caesar and Nanette Fabray



Here's a reference to a link from my Biblio File that actually made me snort with laughter tonight, which I would have thought was impossible, under the circumstances. Since you have a delightful way of making me laugh when I most need it, check out what this guy says to his gal: http://www.thingsmyboyfriendsays.com/

Captain's Log. Star Date: WHEN IS THIS GOING TO GET BETTER??? And Happy Chanukah.

November 29, 2007: Outpatient extraction of 163 ccs of straw-colored fluid from swelling in lower back. One prick for numbing medicine, two "bee stings" from large gauge needles, resulting in seven syringes for fluid collection. Culture positive for Staphylococcus. Instructions to lie flat for a couple of days completely disregarded in favor of feeding and caring for wild children.

December 3, 2007: Outpatient extraction of over 100 ccs of straw colored fluid from swelling in lower back. No numbing medicine, two more large gauge needles (stabs, not stings this time), and the syringes were placed in the biohazard box before I counted them. Increasingly clear appearance of fluid indicates probable cerebrospinal fluid leak. Culture results: pending. Instructions: lie flat with as much of a pressure bandage on my lower back as possible, for as long as possible. I was a compliant patient for the rest of that day, all night and a good part of the next day.

December 5, 2007: My Little One spent all night last night with diarrhea and vomiting. I dozed on the living room floor between the bucket brigade and laundry loads. Those pink hospital basins have their uses; three in circulation at a time, accompanied by a stack of towels and washcloths, can help a sick mommy get through a bad night without carrying the child to the bathroom more than once, because that one time will teach her that the doctors meant what they said when they put lifting restrictions on her. Other mommies I know find their ways through these scary kid illnesses and bedwetting and all the rest...

All of that is trivial accounting of time passed. Some of you know the real cause of my despair tonight; I can't write about it here. I can't yet speak of it without weeping.

A few minutes ago I signed off on a message of gratitude to helpful friends to honor their celebration of Chanukah. I'll use it again here:

With remembrance of lights past, gratitude for lights present, and eagerness for lights future, bless us all.

Monday, December 3, 2007

Ten more things learned... wanna play?

Agathon at Scenes from a Broken Hand responds to Glaser's Essay referred to in my previous post with 10 Things He Has Learned.

How 'bout you?

All I have time to list now is this off-the-cuff list of ten things I've learned recently:

1. Sometimes loving someone(s) means you have to give them up, at least for a while.

2. Having children with a spouse enforces some of those marriage vows, even when the marriage has become a mirage, a cause for shuddering regret, and a constant reminder of one's bad judgment of character. It's never really over. Til death do us part, indeed.

3. The lousy, abusive, accusing words of an ex-husband require regular doses of love, support and contrasting words of encouragement and admiration from a couple dozen wise, respected and credible friends to ease their pain. Still. Why is that? My Advisory Board is made up of a group of talented, intelligent, wise, caring, strong and accomplished individuals who come to a consensus in their assessment of my worth as a friend and mother. Yet one idiot who has proven to have no integrity, who is a cheat and a liar and a narcissistic ignoramus can still say a few words in a certain tone of voice to devastate me.

4. The most stubborn willpower and fiercest of good intentions cannot overcome physical limitations. These fragile bodies we inhabit can bear much, and can enable us to accomplish much. But they sometimes fail us, even in the face of superhuman emotional strength.

5. "You haven't got anything if you haven't got your health."

6. I can endure more suffering than I can bear witness to. The very idea of some of the diagnostic and treatment procedures that have been performed on my body with the goal of improving my health would have made me faint if they had been described to me a year or two ago. Watching or hearing the news, watching an emotionally wrenching movie, or observing the quiet resignation(?)/calm(?) of a group of people in recliners, covered by blankets, receiving chemotherapy infusions is harder for me than to lie on my side with a large gauge needle sticking out of my own lower back.

7. Morphine, oxycodone and all of those pain medications suck. I'd NEVER take one for fun.

8. Humiliation is just one more bump in the road, one more shove to the ground. A person can just keep getting up again and again, and keep going.

9. Self-care is perhaps the hardest challenge of all, but so much depends upon it that NOTHING must get in the way of that daily practice. No matter how difficult it is to force down a meal, to count liters of liquids or grams of protein, to stick to the medication schedule, those things must be done. In each person's life, there is some THING that he or she MUST do to take good care. We must not neglect those things, or we'll pay a high price. So will those who depend on us.

10. I still have much to learn. Gratitude and curiosity are the antidotes to hopelessness, pain and humiliation. As long as I have those two qualities or characteristics, I'm still me.