Thursday, May 31, 2012


I have been tense. Feeling tense and not knowing why I felt tense made me tense. Then I stopped, and thought. My Mom told me I am a good thinker. I trust my Mom, so I just laid on the bed and thought. Of course there was a bunny running in and out of the room, binkying on the bed, sticking his nose in my face reminding me how much I love having them in my life, in my apartment, in my face. Between laughing at Pickle have the time of his life chewing and leaping, climbing and nosing, and me just reaching a calm that hadn't been there for more than a week, I realized why I was so tense. My body had been actually holding the "what now" status of my everyday that has moved from cancer cancer cancer, to I HAVE NO IDEA! I am in this strange limbo, a flip side to the hospital waiting room. There is waiting, but waiting for what? I still have to wait for more scans, but now less frequently. I may have to wait for years to ever know if cancer will come back. In life there is always waiting, yet this is different. There is a slowing down, and a slowing down of the urgency to feel the scare, the danger of losing the life. Now, how to feel THIS life? I smile all the time. I am grateful for the smallest things. There is this want for more, yet I tell myself "in time, in time." Then the scare comes back and time feels so fragile. Now to gauge where I am able, sure enough in my body AND my mind to step full into the summer sun and stick out my face.

Friday, May 18, 2012

Extra Kick

"There is too much, let me sum up." Inigo Montoya

So, okay on Wednesday, it was a pretty big day. We had an appointment with the surgeon, then pharmacy, then lunch, then pedicures, a pit stop at my apartment, then my Mom dropped me off at my cousin's and I went to my first ever "Slumber Party" where the doctor's order of putting something in your vagina once to three times a week is the name of the game. Then I stepped in a hole in the yard as I left Nadine's house, fell like a ton of bricks and sprained my ankle. I took all day yesterday to recover, and am still limping. It is quite funny to see I am sure, I can't step out and view myself, but I still kind of hunch to the left and sometimes hold my left side and NOW I limp on the right from my ankle. In the right lighting and with the right groans (which I do) I could stage a zombie attack in the parking lot. WHICH is how I must have been appearing to people, a zombie, during all of my treatments. The saying of the day was "your coloring is so much better" or "you look so much better." What the hell color was I? Nearly translucent with a splash of green thrown in? I will get the occasional, "you are still pale" but I was always pale? How much paler did I get? Well, actually, how pale can a person get? I truly had no idea. I must have been scaring little children. I could have been an extra in a zombie movie, and missed my chance.... literal Walking Dead and I was too busy to notice.

One supremely cool interaction at the hospital was with a male receptionist while I was checking in. He was asking the standard questions, getting cards and such when a nurse walked up behind him, checking out the waiting room behind me. He asked her what she was up to and she answered "Oh, just shopping." I giggled, "shopping, for what?" She gives a big Vanna wave across the span of the chairs and said "Oh, for all the cool kids." I looked down at the receptionist and said "Ahh, with the pumped up kicks." He choked laughed, did a spit take, stared at me then said "Seriously, that was so awesome." The nurse just stared at us, confused. She stammered, "but, but I don't.." I pointed to the young man, I pointed to me and then said "That's cuz we are the cool kids."

Tuesday, May 15, 2012

Righty Tighty....

If you have never had a pelvic exam, and/or are a male human being, you might want to think seriously about reading this blog post. I mean it. Gonna be some major girlie talk. Speculum. Vagina. Lubricant. You still there? Okay, here goes. I may have said earlier that I have a super cool Radiation Oncologist. One of the major reasons he is so cool, is that he gets my sense of humor, I mean he actually laughs at my jokes. He genuinely thinks I am a funny person. On our last visit (I say we like a royal we cuz I include my Mom in all things) he had promised to save the pelvic exam. I asked him "save it for when? for when I get a craving? like potato chips?" He was chuckling so hard he could barely answer that the exam would be better for my cholesterol than potato chips, but most likely happen next visit. It happened. Any woman that has had this exam knows how uncomfortable, embarrassing and possibly humiliating it can be. Well, after all of the surgeries, exams, scans, x-rays and tests I have had through all of this I didn't really think one more would break me. I was wrong. I went in with my regular sense of humor, even quoting my regular Gynecologist saying "You can never be too rich or too far down the table." My doc and his resident were both laughing. Then, the speculum had to come out. Then, it was discovered I required the pediatric speculum. With radiation of the pelvis some female patients can get what is called stenosis, or a stricturing of the vagina, making it so narrow even a pelvic exam is unbearable. If I weren't bawling while he said it, I would have answered when he asked "So, I guess you aren't sexually active?" Then, while my hands were over my mouth to keep me from screaming, and the resident was offering me her free hands for me to grab onto, he said one of the funniest sentences I have ever heard uttered in a doctor's office, "You need to put something in your vagina at least once to three times a week." If my cries weren't being swallowed, you can bet I would have answered with something fantastic. Hmmmm, something in your vagina? Random things? Toblerones? Cowboys? Multitools? After, when the damned thing was over I was helped up and as I sat there, crying, I felt so terrible for making my doctor feel so terrible. He didn't mean to hurt me, yet I couldn't stop crying. I was so embarrassed. He hugged me. Twice. He felt so bad, for causing me such pain. He prescribed vaginal dilators. This pretty pink bag with a whole range of somethings to put in my vagina once to three times a week. The maker of these dilators is called Owen Mumford, and as I sat with my Mom in the waiting room for my next ct-scan appointment to be made, I said to my Mom "hey, a Mumford for my Muff." I went straight from wanting to lie down on the ground and never stop crying, to giggling at dirty jokes. With my Ehlers-Danlos, due to all of my joint dislocations and heart valve issues, the joke made early on in my life by my Dr. Grover was that I was the loosest girl in town. As my Mom and I stood outside Huntsman, waiting for the valet to bring the car, I said "I went from the loosest girl in town to the tightest eh?" We both smiled. Then I said, "This gives a whole new meaning to the term tight ass doesn't it?" My Mom, my most wonderful sweet voiced Mom says "Yes, you're a Tight Twat."

Thursday, May 10, 2012

Tubeless Tuesday

Well, after having a catheter in my hoo-ha for over two and a half weeks, it was removed on Tuesday. I now feel much closer to the human population, for I no longer carry a bucket of my pee with me everywhere. Nor do I have tubes dangling and jangling. Bladder spasms are due to decrease and I am hoping digestion is bound to get better as well, for my intestines have slowed beyond a snails pace since this Uretal Reimplantation surgery. Peanut wouldn't come near me the first day I was home, I smelled strange and he hated the tubes, bag and bucket. He would actually bite, bonk and try to pick up the bucket and move it out of his way. He knew it wasn't supposed to be there and he made sure I knew that he knew. It was wrong, it smelled wrong and he wanted it gone. He never accepted it. Pickle on the other hand went "oh, a bucket, and it is in my way. guess I'll jump over it." I still have a stent in that goes from my kidney to my bladder and that will come out on the 29th. This last surgery was done with a super duper robot so my recovery has been a lot quicker. I have 5 small scars instead of a wound that goes from one hip to the other hip. I also don't have to go through chemo and radiation while trying to heal. I would like to hope that things might be getting better, but then I don't dare yet. So I'll just wait. So, when better comes along, maybe it will be a surprise. My Aunt Linda said that I was bound for some good luck, having used up all of my bad luck. Does bad luck run out? Or is there a bottomless supply, like stupidity on reality TV?

The Bun

The Bun
If you don't like rabbits, you can suck it, shove it and then go soak your head.