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.

Growing Older

Soooo, big fat fail on my last day of chemo being a no biggie. Just thought I could swoop on in there and get in over like it never really mattered to start. Stupid, stupid girl. Here's a catchup, I failed my chemo two weeks ago.... at least that is how I term it. Every week is a test of my endurance, and this particular week, I failed it. My platelets were too low to get my chemo for the week so I was sent away. I had been feeling so terrible that I secretly wondered how they could safely give chemo to me, so I knew before I knew. With a week off, my platelets rebounded, my hemoglobin did not, which has been sinking a point nearly every week. So, by this week I knew I would be at transfusion level, which is where I didn't want to be through this whole endeavor. But, there I was on my supposed last day, where all the nurses are to come and gather round, singing in congratulation style for you. But not this day, I got extra this, and that, more pills and pokes (the original IV didn't take so they had to go for the other arm which they had been avoiding due to phlebitis and it took the dear sweet nurse three attempts, they bring her out for the shitty sticks which everyone agrees I am.) Then, the sick comes. The overwhelming sickness of all the poison inside me. My nurse tells me I look green, puts an ativan under my tongue and we wait. She says sweetly after a while "Its not easy being green, is it?" No, it isn't. This is about five hours in and still no transfusion, but we only have time to hang one bag of blood tonight, so they want me back tomorrow after my last radiation and to prevent the horror of the poke-fest I am to keep the IV in during the night.

Not every second of the day was a wrenching sob or a wince filled face. In fact, aside from all the super-sonic crap I spent most of the day hanging, talking learning and crying with my new chemo buddy Sam. He is only 24, and every time I see his face I feel like crying for the mere chance that any of his possibility could be stolen. We spent our time together, in that place and shared our history, or pain and the smiles that come from sharing. When the chemo gets so strong and the sicko of it is just to much, we were in our separate pods, doing what humans getting chemo do. Groan, cry, try not to puke, wish they could puke, talk to forget, forget what they were saying.

Not my last day of chemo. Not my last day.