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."

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?

Spring Sunrise

I was getting things ready for my surgery, tidying and cleaning bunny cages, which meant there was garbage to be taken outside. When I went out, there was a tiny bird on the back stairs of my apartment. I have never seen a bird there, so when I came upon him I was at first startled, then so happy. I said "HI!" When I heard myself greeting this bird, I laughed inside because it sounded just the same as when I greet my bunnies every time I come upon them. It could be I come into the room where they are or they come to me, I get so excited to see them I say "Hi sweetboy" or "Who's so cute?" I greeted this wild and tiny bird with such joy and then it flitted away, because it didn't belong. I get so excited for the birdsong to start again every year, I even love when the crows come back and start their early morning caws that cancel out all others. It tells me that Winter is truly over and the Earth is shrugging off that pale dust, looking for the dig to get deeper. Spring and Fall have always been the best times of year, just like sunrise and sunset are the best times of day.

I complain therefore I update

Well, I have been needing to update, but not wanting. Man, it does get a bit old. A bit. I was getting ready to get back to asking questions, making observations, maybe being able to hang out with friends and be a goofball. But nope. I suppose, I just feel like a complainer. The sick and tired of being sick and tired. But, I do complain. I am sick. I am tired. I am grumpy. My family and friends are so lucky, brave and tolerant.

I have another surgery in the very near future. The sixteenth to be exact. The outpatient procedure for the stent went well. Well, if you enjoy the feeling of a 2x4 going from under your ribs to your pelvis, then yeah, well is the word. My ureter is a spaz. It spasms. It is all quite startling, and to be honest, I'm not so quietly freaking out about this surgery. They have to cut above the blocked part of the ureter then take the clear ureter and reattach it to the bladder in a new hole, leaving the old, mushed up blocked section of ureter just there, like a tag on the back of a shirt. A uterus, you don't really use it all of the time. Its like a candy dish on the table, fill it or it collects dust. But a ureter, that sucker is the kitchen sink and if it isn't working you get in a plumber. My plumber is going to be using an 8 million dollar robot at The Huntsman Cancer Institute for my surgery since they can't go through my scar tissue and scar tissue is the reason this has happened. When they did the original surgery (the hysterectomy and lymph node removal) they had to scrape the ureters and with my Ehlers-Danlos I don't heal well, and produce more scar tissue. So, now to get to the ureter they have to go in higher. Robotic ureter surgery. The week of my birthday. I go in on monday and my birthday is on saturday. I know I shouldn't be bummed, but I was really looking forward to going out and celebrating with my family now that Todd is back from Korea. I try to put it all in perspective. No new cancer. So good. I have family and friends. So good. I have bunnies. So good.

I had to run errands, so I was in line in the bank when I noticed a man two spots in front of me. He had one deformed arm, one deformed leg and was using a crutch to get from place to place. I was in a lot of pain, refusing to use pain medication (I do that, a lot) and trying my best to hide it. When I saw this man, I immediately felt guilty, for all my whining, grumpiness, displeasure or any lack of gratefulness in the past week. I tried to stand up straighter, hold my head higher and told myself that pain wasn't a part of me, and even if it was, it didn't matter. When I reached the teller, she didn't say hello, or even hi. She looked me straight in the face and said "You're in pain." I just stammered, "well, yeah, but...I mean, I was trying...I should do better. You're good at this." As Chris will tell you, I do this every time I leave the house, I collected a person. We talked. She had lost her mother to cancer just a year ago, she was so kind and sweet, and my embarrassment from showing my pain went away. I try to smile at everyone I meet. I try to show them the love I have for being alive. The love I have for knowing what I know, for feeling what I feel. I get so sad when the pain I have gets in the way of it, hides it. I long for the days when these blogs change to esoteric and goofball posts, not full of bellyaching (some literally.)

What a Good Earth

“Sour, sweet, bitter, pungent, all must be tasted” Chinese proverb.

Fitting tastes to hold in my mouth with the news of my latest PETscan. Had the scan on the 14th, on the 21st talked to my Radiation Oncologist ... no new cancer. BUT. Yup, the sour and bitter with the sweet. My kidney is enlarged and the ureter is partially blocked, he wants me in with a Urologist ASAP. He meant it. Saw the urologist the next afternoon, he brought in a surgeon and I am going in on Monday for an outpatient procedure to have a stent put in. Then, we will see how it goes and if a further surgery is needed. I have been telling every doctor since my hysterectomy that I am having trouble urinating, it just isn't right. I am not healing well, I don't feel right. I tell every one that has ears that hear. This is since November. I have had three major UTIs, even stayed in the ER overnight with IV antibiotics one was so bad, but it was all jumbled up with chemo, radiation and recovery from surgery. Well, looks like this is a problem from the surgery. Either scar tissue or a misplaced stitch. I have been in so much pain, from just eating and drinking, anything since surgery, I just thought that was how it was going to be. So, checking for cancer found something else to fix. I heard stories like this in the waiting rooms at Huntsman. How cancer actually saved lives. Finding an aneurism that would have killed a woman within weeks while they scanned for tumors, taking one of her kidneys saved her life early so that they could save her life from cancer later.

The same day I got the news, after crying from sadness and frustration from being so ready to be done and feeling better, then to being mad... just mad that I had been telling Doctors for months that something was wrong, and no one could hear me over all of the cancer noise, I decided to not go home, I went grocery shopping. I went to one of my most favorite stores, Good Earth. If you know me, you know why. It is a hippie dippie store. All health food, all yummy and no bunnies were harmed in the making of any cleaning or make-up products sold there. I was distracted by the day, distracted by just going out shopping at all. I haven't done a full on shop for quite a while. When I finally (and I mean finally) got to the check-out, I was $5 short. I hadn't counted correctly (so, SO not like me) and I was mortified. I put my head in my hands, doing my best not to bawl, then immediately asked if I could put back something. I grabbed the first thing out of the top of the bag, my Yerba Matte tea, expensive and should take care of the balance. He looked and looked for it on the register, hesitated, thought about calling a manager, then pulled out a twenty from his pocket and paid the extra five himself. I hung my head and just started to cry. I gave him the tea and asked him to take it, he said he didn't want it and handed it to me and told me to have a good day. I couldn't breath anymore. I walked out of the store with my cart, sat down in my car with my groceries and cried, like I am now. After a while, I felt able to write a note of thanks that I took in with the cart. He just told me to have a good day, most likely as embarrassed by thanks as I am by kindness.

My Mom says I have to learn to be humble. Yet, an aspect of humility is an understanding of ones inferiority, and at that particular moment, boy howdy did I feel inferior. I admit, I feel more comfortable giving kindness than receiving it. Always have. If I had the five dollars I would have given it, gladly.

Recovered Time

It has been one month to the day since my last treatment. I am in, what I am told is, recovery mode. I really do not know what that means. To me. I know what that means to my Radiation Oncologist, my Medical Oncologist, my General Practitioner, or even the ER docs... but to me, it is a mysterious phase of existence. It means waiting. I wanted to feel so much better, just because it was done. HA! ( silly, silly girl ) Ooooh, my white count is still so low I can't be around groups of people, my hemoglobin has even gone back down since the transfusion and they don't know why, I was allergic to myself; itching hands and feet every time I had a bowel movement, projectile vomiting - sometimes while in a motor vehicle. Blah blah blah, whine whine whine. I started out not being able to stop pooping to now not being able to poop. (It is all about the poop folks.) Since the surgery in November I have lost over 20 pounds. I would like to say I have been the paragon of a health conscience person and exercised while eating my vegan diet to achieve such results. No. I have pooped, puked and starved through radiation and chemo for those pounds to disappear. Cancer: The Diet. I don't recommend it.

Strangely, I am not mad, too sad or overwhelmingly grumpy. My bunnies are so glad to have me back home every day, their acting out has diminished. Pickle will be one year old this month. Having found him like a lost babe in the woods, I do not know his real birthday, so I am assigning him a date. Valentine's Day. I have never liked the day, actually hating it so much during High School, when all my friends would receive cards, gifts and candy, I passionately called it "Happy Fucking Valentines Day." Now, I will have a reason. My Velveteen Valentine.

I have a lot of things yet to say, yet to share. I have been busy, figuring out how to recover. I imagine recovery takes time. Recovery may also, if done right, give you time.