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.
Speechless....so heartsick that again you've had an horrific experience surrounding an MRI. Cannot understand the lack of communication to you about what to expect so that you would have had the love and support of Chris with you. They HAVE to know how important that is to their patients! No words for the disappointment that the tumors have not been shrunk to almost nothing....that instead they are basically just the same as when the radiation was started. Trying to find solace in the fact that they have not grown either. Praying that the upcoming decisions regarding Chemo will be as non-invasive as is possible for that kind of treatment. We are hopelessly unable to find any words of comfort to offer you. All we can do is love you! And that we do with all our hearts, with everthing that is in us.
ReplyDelete