Saturday, October 9, 2010

Love Bites

I'd have to say I've been dreading the scans for awhile. Well over a month. Probably close to 3 months. It was right after we finished her last scan, of which I thought we wouldn't have to do again for 6 months- and her doc kindly corrected my thinking by saying- oh no no no- we need to scan every 3 months for a full year following chemo. yaaaaayyyy.  Oh well- it's just another year. It's really only 4 scans. And 4 sedations. And 4 days spent at the hospital. Well 8 if you count having to come in for the pre-sedation physical and the follow up. But it will get better and that was my line of thinking right up until I saw the radiologist with 2 students in tow- buzz on into the MRI suite. Crap.

It was an early morning, 0530 out the door to get to the hospital. As much as my stomach disagrees with the stress, I realize that in a few hours it will be over.  Lily talks nonstop in the car about this and that- she is either as nervous as I am or sensing my nerves. She's got her grandfather's personality- she talks a mile a minute when she's nervous. I am just thinking how much I miss him when traffic stops. I sigh and survey the cars around me. To the left, the windows are too dark to see, I assume they are picking their nose. To the right is a woman talking on the phone. I metally lecture her on the safety issues.  Front right is a truck with something hanging out the cab. I am grateful it isn't a person like I often see here. I recognize the shape. It's a yellow floor buffer. I smile- it's a sign. I would often accompany my dad to work on Saturdays in Toledo and then on business calls around Colorado, I knew the machine.  It's not something you usually see in the back of a truck and for some reason here it was. Call it coincidence, I feel the warmth almost like a hug. Sometimes it's a rainbow, sometimes a butterfly- sometimes an industrial floor care machine that reminds you that there's something greater to the plan and to ride it out.

One of the enormous benefits to arriving at the hospital at this hour is the abundance of parking. Three days ago I wasted 40 minutes of my life waiting for parking. I thought about calculating how much time I've spent waiting for a parking spot at the hospital, but realized it would be too depressing, so I didn't. I just try to leave extra time and plan on visiting with our nurse friends if by some rare grace we find a spot in under 30 minutes.  I could waste more time being angry about it, or I could adjust and find a way to make it work. I spent the time filling out a comment card online about the insufficiency of parking and for question 7. No. No it definitely NOT meet my needs in a timely fashion.

I get Lily checked in and it occurs to her that she has to get a poke and she no longer has a port. She was familiar with that routine, this is new- different. She does not do well with different. I start preparing her for how it will go down, incorporating some of the techniques I saw Miss Julie use time and time again in our early days of chemo. I don't promise that it won't hurt, I know it probably will- even with the numbing cream. I can promise that it will be quick. The anesthesiologist asks if I would prefer to dart her. No, but I would like to take some of those home with me. This is something she is going to have to do, the less additional chemicals we pump into her and the quicker she learns it's part of her norm, the better. She asks if it would help to call the child life specialist down, of course. Miss Wendy is paged.  We play in the playroom while the numbing cream works. Pretty soon they are calling us over to put the IV in. She is chanting - I don't want to do this, I don't want to do this.  The nurse is trying to distract her and they are looking at a picture she drew in the playroom. She sees the needle come out and her eyes get big, as if on cue- Miss Wendy walks in. Lily is distracted by the greeting and her nurse takes the opportunity to poke her. She yells at him and 2 little tears escape. I ask if it hurts right now and she pauses. NO, but it really really really hurt when he poked me. I know- but it doesn't hurt now, it was a quick hurt- now you will be ok.  She nods.  Within minutes she is out cold and we walk down to radiology.  I give the anesthesiologist my number and ask the MRI tech which scans they are doing and how long to expect. They are doing full body , brain and abdomen... it's gonna be 2 hours. We just did brain. I wonder why they are repeating it this time. Well, she's sedated anyhow, better safe than sorry. The anesthesiologist asks if I had breakfast. Ah, my cue to go.

This is the worst part. Knowing that in the next 2 hours we will be relieved or crushed. I need to get hearing aid batteries and a flu shot. No time like the present. I go upstairs, grab the batteries and wander over to immunizations. It's a mass vaccination day. There's a line. Just my luck. Oh well, at least they will have plenty of vaccine and it's 0830 so they won't be rationing yet. Or so I think. Two doctors ahead of me are discussing the benefits of shot v mist. Everyone I've talked to says they feel crappy after the mist. I generally don't like the flu vaccine anyhow, but when Lily was in treatment- her nurse pretty much told me I needed it and went and got it for me. That kinda changed my view. I figure with Phil being gone- I should try and avoid the flu if possible. The doctors are doing the usual bantering pros and cons of each. I have already decided on the shot. The tech informs me that unless someone in my house is immunocompromised- um duh- I have to get the mist. I knew I should have checked those boxes dishonestly. I explain our situation and they say unless she had a bone marrow translpant or organ transplant I am stuck with the mist. Really? Yeah you can blow it out right away if you want. Just a little will do the trick. Seriously? Does anyone else see how ridiculous this is? Yes, but we have a shortage of shots. You are having a mass innoculation and didn't plan on having enough supply? She starts in on how vaccinations are made- I put my hand up- spare me. Mist is better than flu- I guess. If I could get a damn signal I would be filling out a customer satisfaction survey right now. Looking back I should have demanded an ice card and pen and filled it out right there with mist dripping out my nose. Part of me realized it was the stress of the day tempering my attitude.  The tech squirts the mist in my nose and I feel it running right back out. Did it get into your throat? Um yeah, sure. I can give you more. Um No thanks. I wipe away the trickle and she goes for the other nostril- I don't even bother tilting my head.  I leave and head right for the bathroom and blow the offending nonsense out. I wonder at the efficacy of any of this.

By the time I get to the shoppette I feel dizzy, flush and completely woozy. Apparently a little totally does the trick. Maybe I'm just hungry. I grab a book, fruit plate, tea with vitamins and a bottle of multi vites just for good measure. I need air- I pay and go outside. The sun feels better. I chug two vitamins with the tea. Now I won't know if the stomach upset is flu, vitamins or stress. I look at the time- all of my errands took less than a half an hour. An hour an a half to kill. I don't like being far from the scan so I absorb a little vitamin D and go back to the bowels of the pink castle of despair.  I read for awhile. Watch 4 other MRI patients come and go. I feel like one of those movies that they time lapse waiting with people traversing by.  Two guys talk football and blowing various joints out and I glance at the tv. No wonder they are not watching it- it's an infomercial on the ugliest looking full coverage bra I have ever seen. I go back to the book. Then a familiar face rushes through with 2 students in tow. Dr. Rooks. The pediatric radiologist. She is a wonderfully nice, smart woman- my experiences with her have been bad. From bad pancreas to adrenal tumors- if you see her- it's not a good omen. Maybe she's just reviewing the scan before they call it quits- they do that- it's also a good teaching opportunity and she has two students in tow. But tumors are also good teaching opportunities. Damn. Damn. Damn Damn. I try to read but realize I am just looking at the words while I wonder the best way to lie to my husband that everything is fine. Since I can't lie to him, I am actually just trying to lie to myself for awhile. I feel like my bad feeling is justified, but I wanted to be wrong. I am a worry wort. The anesthesiologist pops her perky red noggin through the window- we are going to rescan her leg- it'll be a bit longer. I look at the time- it has been 2 and a half hours already. Here we go.

A little while later they roll the gurney out of the room and we are off to CT.  We pass a gurney with a woman who is unconscious, her husband obviously worried.  We exchange sympathetic smiles. I settle into an unoccupied row of seats and I watch two kids color quietly without supervision. I am impressed by their behavior. My kids would be having a WWF event between the rows of seats or trying to turn it into a track and field event.  Their dad returns, it's the man I passed earlier. Sometimes even kids know when something is wrong and just shut up and color.  I say a silent prayer for them and Lily is done. In the elevator I pick their brains. I know they know what's going on. I am told there was a spot in question on her leg, it probably is just a bruise. We look at her leg. There is a small bug bite she scratched open. surely the MRI wouldn't pick it up? They are very sensitive she says. 

It's almost noon. Lily is snoring away. I would rather her sleep for a lil while after sedation than cry, but I feel gross. Darn Flu mist. If I get sick I'm dropping my kids off with that tech in immunizations and finding the nearest treatment room to occupy.  Lily starts to cry. She has to pee. I lift the covers, it appears that she already has. We get a bed pan and she is screaming how big girls go on the toilet. She lapses in an out of consciousness and fotunately her body takes over when she is asleep- unfortunately her brain doesn't get the memo and she screams everytime she wakes up that she will only go on the toilet. I have a bed pan that proves otherwise- but I know that under NO circumstances will I win this arguement. I let her cry and soothe her the best I can. This goes on for an hour. She buries her head under the sheet and pushes Pooh away. It's not Pooh's first scan, his feeling aren't hurt.

 Finally she has a popsicle and we convince her she can stand so we can go home. The nurse brings her a pair of hospital pants. I laugh. She begins telling him all about how she will NOT wear those pants. She decides she still has to go to the bathroom. We take her, the nurse waits patiently outside while Lily berates me on multiple levels. She does not have to pee. We stay there for a half an hour. My head is throbbing and my throat hurts. I cough and wash my hands for the 85th time this trip. She finally decides she is done trying. I hand her toilet paper which she throws at me and yells that she DID NOT pee. Awesome. So I look at her in her little green eyes and tell her I don't care how brave she is and what medicines she's on and how icky she feels there is no excuse for being rude. She hugs my leg and says sorry mommy, I just want to go home. Then let's go. The nurse has the paperwork ready to sign and says to follow up with her doctor. You betcha. We are out.

We miss her doctor by five minutes. Which buys us a trip back in on Friday. I am almost grateful for the flu mist because I feel so icky thursday night , the only option is to sleep. I take her in Friday and her doctor examines her. He starts grinning and tells me this was exactly what he was hoping to see- the bug bite is right where the spot on the scan was. The redness matches the margins. We'll check it again on her next scan to be careful, but he isn't worried. I wish I could say the same. I ask him if scans can be THAT sensitive? He says yes, and sometimes thats the problem. But try not to worry.  He is a dad so he knows that's easier said than done. We sign up for the Halloween party and say our goodbyes.  I text Phil to let him know the good news. I try to enjoy the good news and not start to worry about the next round.

1 comment:

  1. You were able to share this experience in a way that made me feel your stress! So glad this scan was clear!


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)