Thursday, April 26, 2012

Kicking ass and taking names!

This morning, as scheduled, my fabulous home health nurse removed my foley catheter.  Having been educated by my physician as well as the nurse about what to expect, I knew it could take several hours and multiple attempts at going before my body remembered how to relax correctly and release my bladder contents into the commode.  I was prepared for the possibility that if this didn't happen in a timely fashion, I might have to ask the nurse to come back and straight cath me to relieve my full bladder manually, maybe even take a medication called Flomax to help my bladder muscles relax.  

So I was awesomely surprised when, less than an hour later, feeling a possible urge to empty my bowels, I transferred to the commode and was able to urinate almost immediately.  Sweet!  Something finally went right!  I didn't move my bowels, but I hadn't really expected to, since that's something I still struggle with.  I regularly transfer to the commode and try to go, but I generally don't have success and whenever I get really close to going I get so lightheaded I have to lay back down.  But it's worth it to practice.

I had several more successful urinary trips to the commode today.  And shortly after dinner (eating often seems to stimulate my lower digestive tract) I felt the urge to try #2 again, giving me the opportunity to show my husband how this all works, since he'd been at work all day.  

So we were both awesomely surprised when I had a bowel movement in the commode!!  First successful bowel movement (without fainting) on a toilet device (instead of in a diaper) since January 5th.  I couldn't have asked for a better first day of being fancy foley-free.  I have been working toward these goals for months, and they were as glorious as I dreamed they would be, for all that they were so ingloriously centered on sewery subjects.  To cap off the achievements of the day, I stood up at the edge of my bed to reach under my bottom and straighten out my disposable sheet protector pad, and used my own leg muscle strength to heft my legs from the floor up into the bed on two of the four occasions I did commode transfers today.  I feel so bad-ass I can hardly stand it!

Wednesday, April 25, 2012

So long, foley, and thanks for all the trouble

Tomorrow I'm scheduled to finally, at last, after four long months, get rid of my foley catheter.  I've never been so excited by the prospect of peeing in a toilet before.  To be free from the tether, the constant worry about getting the catheter tube pulled on or the threat of urinary tract infection... it's a huge relief.  The catheter and its tubing make everything harder from dressing in bed to moving around during therapy, so I've been craving this big new freedom for a while.  

It's also a big new set of complications, like making sure I have the energy to transfer from my bed to the commode as many times a day as it takes to keep my bladder happy, allowing extra time whenever I'm preparing to leave the house to make sure I can go to the commode before I go out, as I won't often be able to make use of any restrooms while I'm away from home due to my special needs, and the possibility that sometimes I won't be able to hold it until I make it back home, ensuring that adult diapers will continue to be a part of my life for the foreseeable future.  But all those issues will be worth it to have the foley gone.  Hooray for the next step toward normalcy!

Friday, April 13, 2012


I'd love to tell you all about how my big follow-up MRI went today.  The one where we check on the status of my tumors and find out how much they were shrunk by radiation, maybe even find out if they're completely gone or so small that I won't have to do chemotherapy.  I'd love to tell you all about how I got through the claustrophobic procedure this time compared to last time, but I can't.  I don't remember any of it.  I can tell you about the disaster before and after, though.

My super father-in-law and I got me ready plenty early, all dressed and into my wheelchair well before the transport showed up.  My check-in time was 10:30 so we were expecting the coach around 9:30, but got ready about forty minutes before that even.  In fact the representative from the medical supply company collecting the awfully inadequate medical equipment arrived first, and starting picking up the old, too-small hospital bed, so of course in the middle of that is when the transport arrived.  While I was being strapped in to the van I signed a form that said the medical supplier only picked up the bed and the too-short sliding transfer board, because somehow after almost three weeks of having it in my house and the three weeks of having it in my hospital room before that, now all the sudden the commode doesn't actually belong to this supplier and they aren't responsible for picking it up.  Hmmm.  Guess I'll just hang onto that until someone figures out whose it is and decides they want it back.  

So off I go to the hospital to have my MRI.  I've been mentally preparing for days, and it's working, because this morning I'm very calm and not at all pre-panicky.  I arrive, go to Admissions, and get checked in.  I start to tell the Admissions lady to prepare the imaging staff for the fact that I can't stand or walk, because they've been taken by surprise by this fact in the past, but she explains that from Admissions I'll be going to the Day Surgery check-in and I can inform the nurse there about my special needs.  I didn't know MRI patients check in through the Day Surgery, seems a little odd to me, especially since the other MRI patient who came to Admissions at the same time as me was sent straight off to the imaging people without going to the Day Surgery, but that's because she wasn't having anesthesia, and maybe they call it anesthesia when you have to be given calming drugs like Valium the way I do...don't think too hard about it, and certainly don't panic...  Zoom.  Off I go to the elevators, up a floor, and down a hallway to the Day Surgery check-in, loving my power chair all the way.  There's a line of people trying to talk to the check-in nurse, who turn out to be a bunch of family members trying to find out where their family member patients are, which frankly I think should be in a separate line and not take priority over incoming patients trying to check in, but I just get in line behind them and keep my mouth shut.  While I'm waiting in line a man comes out from the surgery door and calls for patient number 44.  He calls several times, and then makes a half-hearted attempt to pronounce my not-very-complicated last name.  Apparently I'm patient number 44, I just don't know it yet because a bunch of people want to be told (again) that their loved one is still in surgery...

Through the door with the surgery prep nurse I go, starting to get very suspicious of how surgery preparational this all feels.  People keep asking me if I'm having anesthesia, and I keep telling them no, not as far as I know... and they keep asking about my family members, and I keep explaining that I came here alone, but no, I didn't drive (no wonder I have to keep reminding them I can't walk if they think I can drive) and I'll have a coach service take me home... The surgery prep nurse wants me to transfer from my chair to a gurney, I expected this since I can't transfer directly to the MRI scanning table, so I'll have to be slid from a gurney to the scanning table, but the nurse is also talking about undressing me and putting me in a gown and I'm a little confused.  I explain that I wasn't expecting all this preparation, getting undressed, etc. because I'm just having an MRI, and they explain to me that I'm going to be under general anesthesia for the MRI, which no one had previously informed me about.  This is not exactly okay with me, because if I'd known I was going under I would have mentally prepared for all this extra hassle and requested that my husband take the day off work to be with me during it.  I intend to discuss my concerns with the anesthesiologist when he comes in.  But it's already noon and I haven't seen any sign of him yet, and I'm supposed to have a follow-up appointment with my radiation oncologist at 1pm.  I explain this to a surgery prep nurse who very kindly calls and tells them I'll be late, and informs the imaging team, so that they can call RadOnc and tell them I'm on my way as soon as I'm done with my procedure.  

About an HOUR later, after talking with the anesthesiologist and convincing him I don't need general anesthesia as long as they give me the freaking panic button and make sure my arms aren't pinched and give me the valium, he comes back in with the imaging nurse and informs me that my neurosurgeon ordered general anesthesia and I have to have it, and anyway it will make it go faster because if my legs spasm while I'm awake they would have to start all over... So now I'm on my way into the MRI room knowing they will be putting me completely under and shove a horrible breathing tube down my throat that gave me a sore throat for three weeks last time.  Awesome.  I have had to have an IV inserted in the back of my right hand (despite requesting it be in the left, because I'm right handed, but that one just didn't look as good, which must be downright awful since they had to beat the shit out of my skin to get the vein to look "good" on the right hand) and in the middle of laying the gurney down flat and getting ready to slide over to the scanning table I start to feel completely out of whack like the world is sliding sideways around me while I hold still.  The imaging staff are asking me if I can scoot myself over onto their table or if we'll need a slideboard.  I swear nobody gets it, do I look like I can prop up on my arms and swing my hips wherever I want like an expert pommel horse gymnast?? No! I'm middle-aged and over 300lbs and I do not have the ability to levitate!  But I manage to sound very patient when I tell them we'll need the slide board and things are looking very funny to me... oh that's the beginning of the anesthesia medications they injected in my IV without telling me they were starting to inject things in my IV...

And then I woke up in recovery, and my throat hurt.  My pillow kept falling off the top of the gurney out from under my head (because I'm always too tall for the gurneys) and I started to cry.  There was simply too much bullshit in this day not to.  I had about fifteen minutes to recover from anesthesia when we found out that I had about ten minutes to get down to Radiation Oncology if I wanted to see my doctor today, and since it would cost me and arm and a leg to have the coach service bring me back down here if I didn't, that meant the recovery nurses and I had to work a miracle to get my clothes back on me on a gurney too narrow to roll over on and then I needed to scoot back onto my power chair.  Again, in case I didn't mention this earlier, I have no slide board because I had no way to bring mine with me, and the gurney at its lowest is about four inches higher than my chair at its highest.  It was a monumental effort to get up onto the gurney the first time, but slightly less difficult (and more scary) to sort of controlled-fall off of it back onto my chair this time.  Sign this form, here's your stuff, this nice nurse will walk you to RadOnc so you don't get lost (or vomit or pass out or any other worrisome post-anesthesia stuff).

Now it's time to see my Radiation Oncologist, and what do you know but that he can pull up my MRI on the computer already?!  Now we can find out what this was all for, the end of all this waiting and worrying and hoping for these past few months, it was all for this, to find out how tiny and unthreatening my tumors have become, and hopefully not have to do any scary chemotherapy!  

I couldn't even cry while he explained to me that there was no change from the previous scan, while he put them side by side on the screen and showed me how everything looked the same, because he seemed so pleased, so encouraged that they hadn't grown, and that's the goal he assured me, to keep them in check.  But that wasn't my goal, I don't want to just keep them in check, hold them in place there where they squeeze my spinal canal and maybe even continue to exert pressure on the cord for all we know, of course we have to wait for the official radiologist's reading and have copies sent to my neurosurgeon for further interpretation, blah blah blah but I can hardly hear what he's saying anymore, follow up with him in six months but only after I see my surgeon and possibly have another MRI, blah blah blah.  Twenty-eight days of radiation poison hurting my body, painful gurney transfers and all those long minutes of waiting on hard surfaces to get transferred back to bed, all those days of going back and forth from the nursing facility to the hospital over the bumpiest roads I can imagine when every thump is a terrible pain in my back and all that careful swallowing because of the pain in my esophagus and the burning sensation I still get in my skin on my back that was supposed to get rid of the damned cancer and this is all I have to show for it: everything looks the same.  Really?  Is this how we're going to play it?  Okay then. Fuck you, tumors. See you at the next chemotherapy appointment then, since I guess I won't be avoiding that now.

Oh by the way, this blog isn't rated PG anymore.  I'm too angry to make nice now.

Monday, April 9, 2012


I finally came home.

Let that sink in for a second.  I came home.  I am living in my own house, and Tuesday will be the eleventh day at home.  I lived at home for almost eleven days over Christmas and New Years.  Other than that I have not lived at home since November 8th.  I almost can't explain the flurry of mixed emotions I had about coming back here.  Longing, craving, needing it so badly, at the same time as fearing it, having anxiety and nervousness about managing all my issues on our own.  Not alone of course, but with my family team.  My husband, my father-in-law and other family members, our amazing friends who build and cook and nurture us however they can. 

As always, it's been a bumpy road.  There have been equipment challenges, like the medical supplier who defaulted to delivering the Medicare standard equipment instead of the specific equipment my therapists and doctors requested.  So I wound up with a bed so narrow I can't roll over in it, with a rickety almost-broken railing on the side I like to get out of bed on, so I can't pull on it to sit up or anything useful like that.  And a slideboard the width of my keester so once I sit on it, there's no remaining board left to slide across... but we're getting those issues resolved, mostly with help from a more reliable supplier, and with a bit of my usual adaptive ingenuity with other household items. 

I have transportation issues, since I still can't stand up well enough to turn and pivot, so I can't get in and out of our family car; I have to hire wheelchair transportation.  We're looking into having some special public transportation pick me up, which will cost significantly less than private transportation.  I'm still on a catheter and still nearly faint when I try to have bowel movements on the commode, so that is also still a work in progress.  I go to outpatient physical therapy several times a week to continue that fight.  But at least progress is being made.

And boy is it worth it.  To be home every morning when my children wake up, to say goodnight to them every night, to fix their ponytails and help with the homework and even take my power chair up the street to pick them up from school, to kiss my husband every single day when he comes home from work where he got a nice promotion to full-time so he could take over my old role as primary breadwinner.  To have family meals together more often than once or twice a week, to get back into that old routine of mediating disputes and handing out time-outs and singing silly songs together and reading to them and every other mundane joy.  

I'm absolutely loving it.