Searching For Silver

I'm finally back - I've spent the past four days disconnected from the world thanks to the wi-fi not working at my new home.  But that's just one of the things that drives me crazy about being here.

I could justifiably shoot someone at my insurance company if I could figure out who at that damned corporation is responsible for making decisions about my care.  First they yank me out of in-patient rehab where I got 3 hours of quality therapy a day and had all the equipment I need for my daily care because I wasn't meeting their formulaic progress requirements, which failed to take into account the many gains I had made in strength and mobility.  Then they stick me in this nursing facility where there doesn't even exist a bed long enough to accommodate my height, the patient/caregiver ratio is so bad it can take an hour to get a response to patient calls for help, the internet didn't work for four days, the majority of the food is so disgusting even the staff comment on how inedible it is, and my freaking insurance company has only approved me for ONE HOUR of therapy a day.  Oh, and that's split between occupational and physical therapies, so they each only get thirty minutes.  Are you freaking kidding me?!?!  If I couldn't make enough progress to please them in three hours a day, what the hell do they think I'm going to get accomplished in half an hour???  I'll tell you what they think I'm going to accomplish: I'm going to learn how to live like a paraplegic and get sent home after my allotted thirty days are up, and then my wonderful insurance company will just have a few short months to wait until they can be rid of me completely when my COBRA runs out.  They clearly have no interest in seeing me stand or walk again, only in trimming their costs to provide my care.

Well, they had better get ready for a fight.  I don't know if I have to get a lawyer, make angry phone calls, write to my state insurance commissioner, or take out a blistering editorial ad in the paper, but whatever it takes, I'm gonna do it.  I've already impressed the therapist here into asking the insurance for more daily time allotments. If they don't grant her request, they better be ready to hear from me.  Loudly.  I'm too damn young to write off my chances of ever standing or walking again, and I will NOT be shoved headfirst through the cracks in the system and forgotten about.

So where's the silver lining?  Pretty slim pickings, but it wouldn't be me if I didn't find something good in it.  It's closer to home and hubby's work, the parking is free, and it's easy to find.  My ground floor room has a window from which I can see trees, although the window sadly does not open.  The people are just as nice as at the hospital, and seem very competent with the special equipment needed to take care of me.  There are aviaries and aquariums full of cute birds and colorful fish.  Radiation hasn't ruined my esophagus yet, and (fingers crossed) the inside of my left ear might have finally stopped bleeding, mostly.  (Long story that, boils down to a theory that I scratched the inside of my ear in my sleep and my anti-coagulant medications have kept it bleeding for almost a week.)  There are only eight radiation treatments left, and then I'll have a break for a couple weeks while they wait for the swelling it causes to dissipate before follow-up imaging is done, so it'll be a while yet before I need to start worrying about a panic-inducing MRI session.  I enjoy the occasional visits of friends, and now that the internet's working I can finally stay in touch this way as well.  So there's a few glimmers of light here and there.

Hard Goodbyes

I've never been good at goodbyes.  Always emotional, I would typically cry on the last day of school when I said goodbye to my teachers.  I don't know how I'm going to get through the day tomorrow in one piece, for tomorrow I have to say goodbye to all the amazing people I've come to know here in this rehab unit, and move on to a skilled nursing facility.  

Last time I left here my sadness was subverted by my joy and excitement about going home, finally, and in time to share Christmas with my husband and children.  This time I have no such feelings of elation to ease the pain of separation: it feels like insurance politics are forcing me into a place where I have less hope of making significant progress towards standing and walking, and more chance of slowly deteriorating until they finally decide to send me home as an invalid.  That may not be how it goes there, but it's a lot harder to feel optimistic about my recovery there than it would be here.

And how do I say goodbye??  How to you hold it together while you say goodbye to the people who have bathed and comforted and soothed and encouraged and fought for you to get to where you are?  What words could express your gratitude to the people who held your hand while you grieved the loss of your job, or hugged you for no other reason than that they saw you feeling down, or took five minutes out of their busy day to make small talk and try to find something to say to make you laugh?  How do you leave behind the people who cheered your every little victory, who taught you how to set realistic goals and drove you gently but firmly until you reached them, who patiently worked through the delicate dance of balancing your many prescriptions and tests to keep you at optimum health so you could perform at your best?

I reckon I'll just say, "Thank you," and cry a lot. And hug a lot.  And then I'll start figuring out how to convince the folks at the new place to believe that I will get better, and persuade them to fight for me too, and prove to them that I'm not quitting until I can go home as a functioning wife and mother again.  I don't know what else to do.  Goonies never say die.

Misadventures and Munchies

A fact of life with catheters is urinary tract infections will be common.  Generally not major, often not symptomatic in my case, but kind of a pain because they mean you regularly have to be on antibiotics (with their side effects) and regularly have to get your catheter changed out.  In a world full of human error, this means opportunities for humor lurk around every corner.  One night last week I had to have my catheter changed, and the nurse overseeing the installation was so smooth at keeping me chatting and distracted that I didn't even notice the usually somewhat uncomfortable insertion, so I complimented her on her skillful diversions and thanked her and the aide who helped, and went happily to sleep.  

When another aide came to check my blood sugar at 3am as usual, she noticed that my bag wasn't filling up, and mentioned it to a nurse.  At 6am, the next blood sugar check, they made a point to check the catheter bag again, and it was still dry.  That was a red flag, so they woke me up again (I barely wake up for the sugar pokes, and immediately go back to sleep):

Nurse:  "Your catheter bag is empty."

Me, mumbling sleepily:  "Okay, probably need to run the hose down my leg...so gravity...it doesn't drain good...when it's not downhill...and stuff..."

Nurse, in a you're-not-hearing-me tone:  "No, the bag is bone dry, like it's brand new."  The aide helps move the tube down my leg and puts the bed in a feet downhill position. 

Me, all confident:  "Well it is brand new, I just got it last night...it should start to drain now, with the downhill..."

Nurse, not buying it, especially as nothing is happening in the tube yet:  "If you've had it since last night and there's not a drop in there, it's not in there."

These words take a while to sink in to my sleep-hazed awareness, and when they do, I'm in denial.  "Noooo.... surely not... really??"  But it's immediately obvious as soon as they start checking the catheter placement that the wiggling of the tube is not wiggling in the right place.  That's right, my hoo-hah was stealing the show again.  That thing gets more action in this place than anyone has a right to!  I was cracking up with the nurses while they re-did it.  Honestly though, on a woman, you'd be surprised how easy it can be to miss on this one.  They often bring two kits when doing caths on women so that if they hit the wrong spot on the first try, they can leave it there for a second as a roadmap for round two.  It's not a big deal, but it did give me something to giggle and snicker about all day, and that's all I ask to get me through this. Well, almost all...

I have this theory that my karmic compensation for breaking my back (twice) and being nearly paralyzed by cancer all at once is that I occasionally get to spoil myself with goodies guilt-free.  It is a source of great pleasure that I can now indulge in a few dietary indiscretions without jacking my blood glucose sky-high.  So while most of the week I eat healthy foods - and thanks to decreased appetite and increasing pain in my esophagus, less and less of them - on the weekends hubby can bring me contraband:  fast food, or pastry, or ice cream, or the amazing scrumptious things people have baked for me, and I get to enjoy them but my blood sugar tests keep coming back in target or barely elevated.  Oh, and I'm not gaining any weight, either!  If this is what I get to make up for a little of what is going on lately, I'll take it.  And another Klondike bar, please.

An apology? No, but close.

I'm only gonna say this one time.  

A major part of how I cope with all this crap, and a major point of this blog, is focusing on the comedy in everyday life.  I laugh at everything I possibly can, and I want others to laugh with me.  Yes, some of the mishaps along the way would be embarrassing for some or all of the parties involved in them, but I don't share those mishaps for the purposes of shaming anyone.  The people and locations are anonymous because it doesn't matter who did what, what matters is what we take away from it.  You can choose whether to find it outrageous or outrageously funny.  If you follow the entries faithfully, you'll find I poke as much fun at myself and my own mistakes (i.e. the sheetless gown incident) as I do at the mistakes of others, and if you read this and you're a part of one of those mistakes and feel embarrassed, then I'm sorry: not that I told it, but that you chose not to laugh with us.  No one's pointing fingers here, these things could happen to anyone anywhere, and I think laughter is a lot healthier than guilt.  Here's to your health, and mine.

I Am Not A Table

Don't get me wrong, I don't mind the occasional items being set down on me now and then for a minute or two. I do it myself, setting a pen down on my chest so I don't drop it while I grab a kleenex or something like that.  It's okay to set a clean cotton ball on my gown while you do my finger stick to check my blood sugar, for example, since I know that in a minute you're going to grab that cotton ball and clean my finger with it.  All that is fine.  

What I take exception with is being used like a table where multiple items are set on me, some of them I would consider unclean, and then left that way.  I'm talking the disposable cap from the blood draw needle kit, empty wrappers from alcohol wipes, wet dirty wash cloths forgotten about after my sponge bath, rubber tourniquets left under my arm, or pillows moved onto my legs so you can sit in my bedside chair and left there sitting on me after you leave.  When that happens I feel objectified, and not in that almost flattering, feel like an attractive woman sort of way.  Objectified in a way that makes me feel like you see me as an object, like a table or a chair where you can put things you want to get out of your way, and that's not okay with me.  There is not just a bed here, there is a person; a person who can't reach the chair to put the pillows back and can't always access the trash can to dispose of your trash and certainly doesn't want to touch anything unclean without the benefit of the gloves you get to wear when you touch them.  I don't want to point any fingers here, but nurses and aides and even doctors are generally not guilty of these indiscretions, so...uh...dietary and bloodsucking lab techs....*cough*...you know who you are...

And while we're already bitching, let me add this on the subject of finger sticks:  the closer to the tip of the finger, the more it hurts.  If you must stick the tip of my finger, for pete's sake don't press so freaking hard.  Or better yet, stab the softer, cushioned finger pad instead of the tip in the first place.  Pinkies bleed really good there, and don't hurt much, compared to the painful purple bruises you are leaving on the tips of my ring and middle fingers.  Yes, I'm talking to you, occasional 3am and 6am finger stick girl (but not the one who showed me her beautiful decorated cake photo - you are gentle and good at finger sticks!).  You, fingertip girl, are making this twice as painful as it needs to be.  I asked you once to start sticking further from the tip and you either forgot or disregarded it, so next time I'm going to ask you to let me do the stick myself.  That is all.

(All the bitching, anyway)

On to medical updates.  I've begun to experience the beginnings of radiation side effects.  My esophagus, irritated by radiation, is occasionally swollen or inflamed, giving me the feeling that something I've swallowed is stuck in it, although nothing is actually there.  It's becoming painful to swallow pills, and my giant fish oil pill is almost impossible to choke down now.  By the end of this week it is projected that my esophagitis will be notably worse and it will continue to worsen until the end of my 28 radiation treatments.  It will take a couple of weeks after radiation is done to heal up, I'm told.  I now have a numbing mouthwash I can drink when I want it, right before meals, that helps numb my esophagus, but after trying it a few times I'm postponing it until the pain gets more intolerable, since it makes my food seem even more tasteless and unappealing after it numbs my tongue on the way to my throat.  My appetite is quite poor, and I sometimes dismiss my unappealing food in favor of a quick protein drink I can force down to satisfy my calorie needs without having to struggle to eat food I'm not in the mood to eat.  For those keeping track, I am three pounds away from having lost fifty pounds since August 2011.  Probably get there by the end of this week if the trend continues.  I might be starting to get a little fatigued as well.

Today in therapy I was able to pull up my pants (in bed) with only one person helping, and they only helped roll my hips, not pull up the pants, which dramatically improves the score I'll receive for that skill.  We also did several sliding transfers from wheelchair to bed and back, although that still requires two helpers and so doesn't score quite as well.  We have begun serious talks about what skills I must have before I would consider myself ready for discharge, and how we will deal with the issue of transportation, since I currently am not capable of getting in and out of my car, so tomorrow's team conference results should prove interesting. The team of therapists and doctors will be discussing all my scores and working out the details of the equipment and transportation needs I might have, so I'm looking forward to hearing how that discussion goes.

Yesterday, the radiation oncology resident working with me, who saw me when I was still in ICU weeks ago, said he could definitely see some improvement in my leg movements since then, and I thought that was very encouraging.  He seemed quite pleased, which was a pleasant reminder of how far I've come, even if from my perspective, working so hard every day, the improvements seem so tiny as to be hardly appreciable sometimes. 

A funny story and a bittersweet end

I'm going to confess now: I am hot.  Not in that swimsuit model kind of way, but in that menopausal woman sweating through the night kind of way.  Not that I'm old enough for menopause, that's just the first thing I think of when I feel like I'm having hot flashes...you know what, forget I mentioned menopause. I'm just always warm, okay?

Anyway, since I'm always warm I frequently have my hospital room window open, and I often don't have any bedding covering me.  I just wear my hospital gown as a nightie and sleep in the open.  One night the temperature dropped a bit and I got too chilly in the middle of the night.  I reached down sleepily around 4am and pulled my sheet up from my lap to cover my arms - the only part of me feeling the chill, since my legs don't really notice temperature much.

It wasn't until staff came in with my breakfast and wanted to get the day rolling by checking my blood sugar and giving me my morning medications that I realized I hadn't had a sheet covering me that night.  Nope, what I'd pulled up to cover my arms was the hem of my hospital gown, leaving me naked as a jaybird from the waist down.  I was in a fit of laughter for many minutes over that one, I can tell you.

Today was not a day for laughter though. Today, after carrying me patiently for months past what the law requires, my long-time employer had to let me go.  They have been generous beyond measure, and both they and I still hope that soon, as soon as possible, I will recover enough to return to working in an office environment, and they would love to have me back as much as I would love to rejoin them.  But for now, we'll have to tighten the belt a bit, and try to stay focused on getting strong, and float along as best we can until I'm back on my feet, either literally or just metaphorically.  These are scary times to be unemployed, but we have some plans in place and we'll be preserving my medical insurance as long as possible, and though I don't know exactly how yet, we will overcome this just as we have been overcoming everything else life has thrown at us lately.  Nothing can keep us down. Nothing.