I have been going for Radiation Treatment 5 days a week for 6 weeks now. I'll just let you conjure up some sort of visual as to what a vagina/ass might look and feel like after having Radiation beams localized on one tiny, sensitive, recently operated on area. Now take that visual and multiply it by approximately 8 times more then what you thought and you might get a small inkling as to how I look and feel.
It's been way worse then I expected.
I started treatment on Tuesday, December 10th, 2013. Luckily for me, Sloan was able to recommend a Radiologist at a local hospital which makes my life a WHOLE lot easier then trekking to/from either of Sloan's locations. The nurses and my doctor have been extremely pleasant and helpful and to my extreme surprise and relief, I am usually in and out of there in less then a half hour. The treatment itself only takes about 10-15 minutes total. Plus, my new doctor (after consulting with my team of existing doctor's) decided that he was only going to treat the localized area instead of my entire pelvic region. This was supposed to make more sense in case later down the road I needed additional treatment, plus help to decrease any extra side effects that I really didn't need to go through.
Every day I get to strip from the waist down, put on a lovely hospital gown, hop up on a cold table, lay spread eagle in a mold of my legs and ass cheeks with a dilator (fancy medical term for dildo) shoved up my vag and have the techs line me up like escaped addicts out of rehab before a 2 minute CT Scan and then 6.5 minutes of treatment.
A few days before treatment began I had to come in to sit for a mold as well as get tattooed. The "tattoo's" are 4 tiny black dots that basically act as a compass to line me up on the machine. But they're there forever. Sometimes I look at myself in the mirror and think they're a speck of dirt or an ingrown hair. There are two on my stomach and two on my hips. They're new "beauty marks" that I never wanted.
The mold I mentioned looked like a flat garbage bag laying spread out on a table the first time I saw it. Once laying on it, I had to sit spread eagle for about 10 minutes while the sides of the garbage bag were taped to my legs, forming a mold once it hardened. If you ever wondered what a garbage bag mold of butt cheeks and legs looks like, I give you mine, for your viewing pleasure:
The first few weeks I found myself to have the energy of a 92 year old. I was out of my bed a total of 4 hours per day and that was only to drag myself out of the house for treatment. I'm still constantly tired with no energy but it's become a little more manageable.
After about two weeks, I started noticing this burning everyone was referring to. After 3 weeks I became way too familiar with it and after 4 weeks I began counting the days until the torture would end.
The best way I can describe it is by saying it's as if I had a chemical peel. The skin all around down there (like, the whoooole area down there...) has been repeatedly burned so much that the first few layers have been completely singed off. This has lead to open sores in all sorts of areas and holes one would never want open sores in. The pain around my surgical area has become so great that I am back on pain meds just to be able to get through the day. I think I have used my damn donut pillow more for treatment then my three vag surgeries combined. And if I'm not in pain, I'm just flat out uncomfortable. Picture the crispiness and dry skin and itching and slight swelling and downright punishment that comes along with a sunburn. Now picture that sunburn in and around your unmentionables. And there's nothing to do for it but inhale pain meds and glop on Aquaphor to the point that it's oozing out the sides of your underwear. Basically, in a nutshell, I have been miserable.
On top of everything else, I most likely won't even know if this has worked until I either do or don't wind up with another tumor down there. I just keep thinking to myself that if a full blown tumor didn't show up on my last set of scans then there's no way it's going to detect anything super small down there. The fact that this last vaginal tumor didn't show at all makes me really question what the fuck the purpose of the stupid CT/PET Scan machine actually is. But I'll save that rant an' rave for another time.
Aside from all the physical pain and torment I've been enduring, my mental agony has - I thought - somewhat gotten better. I haven't been blowing through tissue boxes (cue lame-punch-line-drum-solo-sound-effect) full of tears and snot like I was doing not too long ago...so that's good, right? Welp, I guess my body wanted to remind me that the joke's on me because around 3am the night of the 15th (or morning of the 16th if you want to be technical) I kid you not, I was preparing to die of a heart attack.
I'm not sure what it is but the last week or so I have been having difficulty sleeping. I've been taking pain killers as needed throughout the day but hadn't taken any a few hours before I tried going to bed that night. As usual, I couldn't sleep so around 2:45am or so I took a dose of ZzzQuil. As I was laying down in my bed, my heart started beating so fast and hard I could see it popping out of my chest. I started to feel dizzy and sick and it was as if my chest was being compressed and squeezed. I tried to take some calming deep breaths but this was unlike anything I had ever experienced. I was trying to chalk it up to anxiety but I've had sooo many bouts with damn panic attacks that I knew this was different. Plus, I was afraid to take any Xanax being that I had taken pain killers during the day and had just taken the sleep aid.
After a few minutes of pacing around in my room, trying to slow my breath and crazy claustrophobic feelings, my heart rate started to relax a bit. Of course, at that point I was freaked out and did the worst thing I could - I Google'd it. Everything was telling me I had just had a heart attack.
I ran to the hall closet and chewed on an aspirin. As I was sitting back down on my bed, another attack started to take hold. I opened my dad's door and told him I needed to go to the hospital. One minute later I legitimately thought I was dying and told him to call 911. The first thing that came into my head was, Greeeeaaat...you survived Cancer but died because of a fucking heart attack...!
After way too much time passed to be living so close to a hospital, about 5 paramedics and a cop showed up. I wasn't dying. In fact, my heart is great. I apparently had a major anxiety attack. According to my dad, my mom used to have them like this when she was younger as well, and had a few experiences where she called 911 because she thought the same thing I did.
Wonderful! Just what I need. To make things even better, I wasn't even feeling any anxiety at all before the attack hit. Needless to say, that was definitely not a fun feeling. I swear, there is never a damn dull moment!
To look on the bright side, I have only 6 treatments left. Hooray!!! Monday, January 27th, 2014 I will be done with Radiation and I could NOT be happier about it. My next Lupron injection is coming up on the 23rd followed by a surgery follow up appointment with my vag surgeon, my next set of CT/PET Scans and an appointment with my Oncologist. Hopefully, by mid February I will be running for the hills from any kind of doctor, treatment or test known to man.
I turned 29 on December 17th. It's hard to believe how young I felt at 23 when I was first diagnosed and how no matter how much time goes by living through this awful nightmare of a disease, it never gets any easier.
In the spirit of the new year I decided that perhaps I should really make a conscious effort when selecting my New Year's Resolution. I wanted it to be something I needed to do for myself to make this journey a little more bearable. I committed to this: to live each day with new eyes. I'm working on it. Hopefully by 2015, I will be a pro.
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