Glowinthedark in Wonderland (the dark one, not the Disney version)
Welcome to Glowinthedark’s Wild Ride! What a fun-filled week this has been!
Last Sunday I asked myself, self, should we start blogging daily? Detail this journey? Share it with the world, or at least our faithful readers? Self and I agreed that that would be a faboo idea. So I opened a new post and started tap-tap tapping away. Then I got tired, and went to bed. The post stayed open on the laptop all week. But as some of you know, this adventure got off to a very rocky start, and I spent most of the week in bed. Well, that’s a lie – I was in bed when my body ALLOWED me to rest, the rest of the time was spent in appreciation of indoor plumbing and water. I’ll get to that special time later.
We must begin at the beginning. Monday, 1.29.12 started my radiation, AND we cannot forget my first chemo treatment. Radiation was cake, is cake, and will probably remain cake if you discount having to disrobe from the waist down, put on a hospital gown and my robe and then sit in the radiation holding corral with the rest of those awaiting their bonding time with their machine. There are four machines. Mine is called the Trilogy. It has no stickers, but there are colorful lights in the ceiling which are usually a soothing blue, but can be changed to different colors or can also be set to be a psychedelic light show, which I found quite enjoyable on Thursday because it took my mind off the fact that I wanted to hurl every five minutes. On my way to treatment each day I have to drink 10oz of water so my bladder can be full when I get nuked. This adds immensely to my joy in the corral. Once I am escorted to my machine, I first have to identify myself (like the giant mask of my abdomen would actually fit anyone else) by photo, give my birthdate, and indicate that I am having pelvic radiation. THEN I get strapped on to the table on the machine. Remember those things they used to measure feet when you were little? That they moved the parts to exactly match your foot? That’s what the table is like, sort of. There’s a head stop, where your head goes, they strap your feet together in the bondage device, and stick the knee cushions under your legs, then get the cold plastic mask and buckle you in. Again, exposure and vulnerability are part of this fun too. On Day One, once I was ready for the glowray, the fire alarm went off, and I was serenaded by not only 80 & 90’s adult contemporary, but by the chant “code red, cancer institute, unknown incident, please evacuate in a calm and orderly fashion” accented by some cool flashing lights. Apparently the therapists called to make sure it was a drill before they came in to tell me that it indeed was a drill and that I could remain in lock-down on the table. Then before I knew it, my special machine whirred and clicked and fired the glowray at me, and moved around me like that one horror movie where the machine impregnated the woman and she ended up having a cyborg baby. Fortunately for me, I no longer have the organs necessary to grow and/or birth a cyborg, so that is not an issue. My machine can only make me glow in the dark. Following my bonding with my machine, I was released and sent back to my changing room. This week, I used the dolphin room, the duck room, and the frog room. Next week, I am going to check out the cow room, and the pig room. They are all pretty much the same, but have farm animal signs on the doors which I find amusing, because after we leave the changing pens, we sit in the holding corral. Get it? There’s a whole farm theme going on. I crack myself up. After I am finally changed and allowed to pee, I turned back out into the wild.
I interrupt here because I am somewhat troubled by the use of Lily Allen’s song as a commercial jingle for Special K granola bars. Now back to the story.
The radiation treatments continue for the next 4 more weeks. Five times a week. I am now 20% done radiation. The only additional torment ahead of me is that they will now be at 7am for the next 4 weeks. This means I need to leave at 5:30am each day, because I want to be able to work a full day afterwards. Hopefully this works out. But I am getting off track, damn you adult adhd! On Monday I got to have an extra special day. I got to have my first chemo treatment too. I was nervous, but not scared. They too have a corral, and I got to spend time with a gentleman who told me that I really wasn’t nervous, but actually scared, thankyouverymuch. Gee thanks buddy. When the nice nurse beckoned, I was escorted to my chemo infusion room. It had a bathroom, and comfy bed, and a tv, and was very nice, and it even had warmed blankies. It’s all a trick to lull you into the false sense of security that none of this will be very bad, and you will be just fine. Just fine. Lies. Lies. Lies.
The nurses are very nice because they are about to poison you. They jab you with that IV needle and tell you they will give you some saline first, the some steroids and anti-nausea medication. Then some Benadryl to make you sleepy. Then they sneak in with the glowjuice and swap out that saline and then sneak away, quietly chuckling because they know in a couple of days you will discover what they have done. It all seemed fine until I started having to pee every freaking 20 minutes for the next six hours. I am dead serious. EVERY 20 MINUTES. I had no idea what lay ahead. I left there thinking “this isn’t so bad”. I did my radiation treatment, and even went to work the next day. THEN EVERY HORRIBLE FEELING ONE CAN FEEL CLAIMED ME ON WEDNESDAY. I started to feel a tad ill on Tuesday night but not too icky. I went to treatment and was even on my way to work on Wednesday after when my body let me know that it would have none of this. Turn the damn car around missy, and get home before you hurl in the car. By 2pm on Wednesday, I realize that this is what they mean by side effects. OH MY DOG! I’ll spare you the graphic details of the next three days, but lets just say that when they say the my special cocktail, Cisplatin, is the most emetic of the platinum based chemotherapies, they do not lie. Spew and poo. All day. All night. I’ve never had a flu that was as brutal as those three days were. Never. EVER. I managed to keep a little food down, some eggs, some chai, some yogurt. All I really wanted was pineapple juice. Lots of pineapple juice. Which of course we could not find in the regular dairy department. Andy did eventually find some for me on Thursday after we went to treatment, but of course it was expensive organic pineapple juice. But it helped. I’d forgotten that pineapple juice also comes in cans (Thanks Lisa for reminding me) so now we will have supplies on hand for the next post-chemo apocalypse. Let me just say, that I would wish this on no one, but throughout the nightmare of the post-chemo-body-revolution (which is still waging war with me, although it is definitely losing the battle now) all I kept thinking was how freaking lucky I was that I only had to endure this every 29 days. I cannot imagine what it must be like to go through this more frequently. Even now, I send good thoughts out every time I think of all the people who have to endure the sheer horror of chemo more often than me. And every time I think of that IV bag full of yellow poison that I have ahead of me, my poor tummy turns and churns in anticipate agony.
Aside from all that fun, I’m doing okay I guess. Exhausted would be the word of choice. I want to sleep and sleep and sleep, and then sleep some more. My sense of smell is starting to return to normal – it was seriously jacked up for a few days – some things smelled better than ever, and others, like skunk crossed with sour milk with notes of human decay and burning plastic. A lot of foods that I would normally crave make me want to gag, whether I see them, smell them or even think of them, and some food that I haven’t eaten in forever are the thing I want to eat now, right now, what are you waiting for, get me my food now!! Like homefries. I NEEDED homefries yesterday. Dutch Kitchen has homefries. MUST HAVE HOME FRIES. ANDY PLEASE GO GET MOMMY HOMEFRIES. NOW. RIGHT NOW. But don’t even mention spinach dip. Just thinking of it conjures that watery feeling in your mouth you get right before you puke. It is like being pregnant, but without squeezing out a spawn after suffering through it for nine months. And it is an ALL DAY thing. Nausea all day. Every day. Except when the food craving comes on. Even the thought of PIZZA lately has had mixed responses the last few days.
Did I mention the bloating? Oh how could I forget that I gained and lost 10 pounds over the course of three days! That was fun, because that mask I have conforms to my body and when there is more body to conform to, it is not nearly as comfy as one might think. Kinda painful actually. But the bloating is gone, and today we had chai, an english muffin and a banana. And I’m kinda hungry for some yogurt, although I have been craving some breaded pork chops. Oh yeah, and oatmeal has kinda saved my life the last few days along with the pineapple juice. Damn it why did I think of breaded pork chops?
There you have it, my peeps. Week one of my journey. All here in print. Not in every glorious detail, but you get the gist.
There are some highlights though…my friend Patty sent me two awesome animal hats (not gonna tell you want they are, but let’s just say they are entirely me), and a monkey ear warmer. My car is hanging in there. My fabulous friends at work made me some great food, which fortunately could be frozen because I was only able to eat a little bit of some of it – although Andy did also enjoy the tuna casserole and the barbecue. (he was not permitted to enjoy the butternut blondies. MINE. ALL MINE. Touch them and I will cut off your fingers.)
Tomorrow starts week 2. I only have one more treatment with Cisplatin. Then I’ll get two less toxic chemotherapy drugs in the later treatments. One is a kinder and gentler Cisplatin called Carboplatin. The other is Taxol. At the end of this week I will be 40% done my radiation treatments. This time will fly by. In the meantime you can be enthralled by my literary accounts of my journey away from the C-Monster. With my new glowinthedark powers, I can eradicate it and make a bag of microwave popcorn at the same time.
Footnote: Almost forgot to mention that two of the most difficult aspects of my treatment are having to watch FauxNews in the corral and having to endure the adult contemporary music mix featuring such stellar acts like Journey, Foreigner, Daughtry and Bon Jovi while I am in the laser tag machine and cannot escape. Just sayin’