Xanadu- Olivia Newton John

Today was full. There is no other description for this day. Full of life. Full of feeling. I left the house by myself for the first time in eight days or so. I woke up took a shower and made it to the Sangha Mamas group. A wonderful meditation/parenting group that I belong too. It was worth the effort. I didn't make it for the meditation but made it for the talk (the previous post link). It was just what I needed. The mothers of Sangha Mamas are amazing. They have come to my aid over and over and I feel so lucky. What a community. wow! I felt full of energy and life after the meeting. Then some fatigue set in and sadness about my current challenges. Then I read an inspirational email from a friend. I felt joy again. When I go out into the "real world" I see so many things that are not my life right now. It is hard not to feel the loss. I miss my chosen career. So here's a lesson in attachment to outcomes for you self. I feel like I have so many lessons that I can barely move through them sometimes. And sometimes I just want to say fuck the lessons already universe.

Today didn't feel like a roller coaster ride of emotion per say but more like riding waves while sitting in a kayak on a windy day. The titanic is long gone and now I am in shallow waters bobbing back and forth with the emotions of the day rolling up to my kayak. When there is a suffering wave there is also joy wave. Supposedly if you experience one than you experience the other. So my question is if you experience deep suffering then do you experience extreme joy? I think the answer is yes. What would be really great is if we could experience extreme joy for a long period of time after a long period of deep suffering. Okay self that is why people use drugs, its called a high. Alright, I am back on my kayak, life jacket is on and I am trying to ride the feeling waves without judgement of what each wave brings. I sound so with it, don't I. Well don't let it fool you because it still sucks some of the time, okay a lot of the time, to feel bad. I imagine this is even true for the the Dali Lama.

I wanted to share a poem that I wrote years ago before I was a mother and before my life was turned upside down with cancer. I was up early one morning having a coffee on a warm spring morning in our living room.

How lucky am I
to see the sunlight
dance with the tree
reflecting on the flat paint
of the living room wall
discs of light, shifting
fluttering, dancing
like sequins on a prom dress
full of anticipation
and excitement for what the future holds
How lucky I am.


I still feel lucky and blessed. I will finish this post with this bit of inspiration by Olivia Newton John:

And now
Open your eyes and see
What we have made is real
We are in Xanadu

Xanadu, your neon lights will shine for you, Xanadu

Healing

http://links.zencast.org/zencast_257_healing

Loved this today. An hour of pure wisdom

Grease - Fankie Valli

Weak is the word, it's the motion. Yes Weak is the way I've been feeling...

So how do you describe the place where you can get out of bed but your too exhausted to do anything with that effort. I can watch people whirl around me cooking and cleaning. I can watch little C pull his circus train but the haze is still here. I sat down and emptied my purse today, that felt good. I am not on any medications today. I still feel half beaten yet not bed ridden. So there's the definition. what's the word? Flofog... Can't quite get in the flow of life because body and head are in a fog. Living" la vida flofog".

I imagine those cancer cells or what's left of them are giving their farewells to my blood, body and lungs. Maybe they are hosting a comedy night and roasting each other about the good ole times when they invaded my ass. laughing at the damage and praising each others ability to stick around for the long haul.

I imagine it's more like the movie Titanic, the cancer cells are doomed to sink. They are being flushed to sea. The cells, fancy china and dinner parties they enjoyed are destroyed in a deluge of chemotherapy. Goodbye suckers, I am queen of the world. I gladly accept the soul treasures cancer has forced me to discover but adios to you ship of hell. Fade in Celine dion's, My heart will go on.

I guess I have 5 more Titanics to ride. Holy shit. This is why the phrase "Just take it one day at a time" is very important. So important that there was a cheesy sitcom from created from the phrase. I am sure a T-shirt is out there too.

Well I am going to continue enjoying my flofog.

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Another one rides the Bus- Weird Al

Still feel like I have been hit by a bus. Not a rock-n-roll tour bus but definitely a public bus with some uplifting ironic message on the side, for improving your life. Like an advertisement for the biggest loser or weight watchers. I also feel like my head has been on spin cycle in the dryer. Drying out and deleting all the bits of intelligence I once possessed.

C and I watched some Wonder Pets today. Enjoyed the music and laughed at some of the juvenile humor that only a juvenile adult like myself would enjoy.

I ate dinner at the table last night! I am tempted to try a shower today. I know I would feel better yet the production of a shower is not simple for me, it's a bag thing. When you have a colostomy you never really hop in and out of the shower. It is a process. I'll save that story for another time.

Everyday, The ultimate question always boils down to: will it give me energy or will it take it away? I have such low reserves that I have to pick my choices wisely, especially now. Writing gives me energy because I feel like I can get it out. I can puke out my experience and feelings into this blog and it depletes some of the power this disease thinks it has over me. I can reflect and know that this is a moment in time, in my lifetime, which has a long future ahead.

Back to my bus analogy. Cheers to the bus and your attempt to take me down. It's not going to happen so I honor you for your attempt. Instead, i will be getting on and riding you bus. ( which is probably true because of my aching side effects, i cant imagine driving.) Bad joke and a tangent gone to far. But who is gonna argue with the girl fighting cancer. Ha ha!

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Africa - Toto

The calm after the storm. Last night was a storm. I don't really want to relive it but lets just say I hope I don't have to go through another night like that. Colostomy care is it's own world. Next time I will prevent or over medicate. I am most likely dehydrated. I have a headache. I puked 3 x last night. It was such a relief after.

Today has been a lot of sleeping. I did get the mail and smell fresh air. My energy and creativity are zapped. I really want a vanilla cupcake with frosting. I did eat today, soup, noodles all the comfort food crap.

My one moment of inspiration: i
decided I am going to use my pagnes ( african fabric) from Benin to make head scarves. One way I can be reminded of my adventure and a defining time in my life. Also reminds me I have global support of my RPCV'S. I am going to find some traditional wraps to mix it up. Time to be loud with color. I actually still have my hair it has not fallen out.

Time to save the energy. I hope for a better tomorrow.

True Colors - Cyndi Lauper

Sleeping toddler next to me. Sweet sounds of his breath. sleep. Snow flakes dancing around the sky. Wind whistling in the nearby trees. This is now.

Headache, constipation and nausea. My mouth is rough and sore. Lying in bed another day. Pain relieved by a strong drug. The window rattles. Cramping in my gut. This is now.

The tunnel is a little darker today. My family and friends are my light. Thank you for your help and strength.

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Rocket Man - Elton John

A little bit of snow fell from the sky today here in Bellingham. It felt like hope. It felt like a little snow blanket of comfort. Nature saying I am here and things change and transform. Now it's sunny.

I made it out of bed for a shower today. I helped my son get dressed and ready for Childcare. I feel accomplished. I have continued my day in bed, dozing and on the phone. After my shower I could see my port tubing under my skin for the first time without tegaderm. It rolls under my fingers like a flexible straw. More power for my battle. The ever changing body designed by cancer.

Today I learned that I have heartburn and need to take something for it, Prilosec. I need a laxative and the pain I feel in my legs is mainly a result of the Nulesta shot. My body is working hard to produce white blood cells because the shot told my body get into gear and work. It was recommend I take Claritin to help with the pain. It feels like there is a team of gnomes with little hammers pounding up and down my legs, trying to create some garden art out of my body. So I've got my sister-in-law on the way to bring me some claritin, food and TLC. Let's hope it works

I am off steroids today and no nausea, yeah! At 4:30am I was up and found a chemo calendar app. So I can track my symptoms and reflect on the change.

I do feel like there is light at the end of this tunnel. I know I am going to need a lot of help. I am working on the care calendar again. Riding the wave.

Big love to my mom. I can't imagine having to watch your only child suffer. I love you thank you for your strength and help.

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Hot Dog - They Might Be Giants

Up at 3 am with ugly stomach I like to call it. Things are moving slow and causing pain. Aching legs! I feel a bit tortured. Well they say this is the "black week" next week will be the " grey week" and then the "white week". Each week lightening up in symptoms. The challenge of the unknown symptom progression. This makes it difficult to know what kind of help I may need. I am supposed to go get a blood draw today but I don't see that happening. My power port, super bionic addition is bruised and sore. So I will request and arm vein be victimized this week. Let the port heal. At this moment, I can see my time with Canyon will be filled with Dora and Diego videos, although not my first choice of activity. We can be together and cuddle. What he really loves right now is this catchy tune called "Hot Dog", by they might be giants. It is so danceable and he likes to take off his shirt pretend like he is swimming on the bed and then jump, dance and sing, Hot Dog. I love all of his energy. He does fill me up with his spirit. He is my inspiration. I am going to keep fighting this stupid disease. I will learn to get the help I need. I will think of all those who have done this before and those who will someday have to endure this hell.

Reel Wisdom: Lessons from 40 Films in 7 Minutes

Check out this video on YouTube:

http://www.youtube.com/watch?v=n8CaC4RMwsM&feature=youtube_gdata_player

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We're not gonna take it- Twisted Sister

Bye bye cancer....

You can't always get what you want - Rolling Stones

Well the truck is in overdrive beating me down. Managed some breakfast this morning, waffle, blueberries and warm lemon water. I feel like I have the flu, aches, pains and a headache. Canyon is full of energy ready for the day. Thankfully there are three loving adults here to meet his needs, so I can rest. I think it is funny since I have been dealing with cancer I feel like I should enter contests. Maybe part of my psyche believes I deserve a break from all this and so maybe I could win. Another source of hope. A way to fantasize out of pain and suffering. I imagine winning would result my life would be Like a commercial on TV, I would look very happy, probably laughing at something cute my child said. The mood would be playful and my family would be holding hands in a warm tropical climate on a beach. Everyone would look and feel well rested and sun-kissed with health. The only stress of the day is which beach to enjoy and where to eat dinner. I guess the advertisements on tv and in magazines create these images to make us want more then what we have.

Okay I am in back in my reality. It will and always does change. I have had moments in my life of tropical paradise and pure joy. I have been blessed to travel the world and live in another culture. Step outside my own culture norms and learn other ways of living life. I am lucky to have such a wonderful family and community of support.

This cancer culture I have been living in these past two years continuously tests me. Ya think? (sarcasm self replies) I am sure we all say it, cancer is not supposed to happen to me or my family.

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Cake Walk Song

I feel like I am in a cake walk contest. The problem is that I am nauseous and don'twant any cake but the music is playing and I have no choice and must play the game. I finished my first chemo cocktail infusions and feel like I have been mowed down. Ouch, poison is not a welcomed visitor in my body. It took all my effort to read books and play briefly with my little guy. This too shall pass. The question is which cake will I end up with? Hopefully a peaceful healthy one. I guess I am going to have to get some help at home. Things can only get better right HoJo?

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Infusion altar in the morning sun

Brass in Pocket - The Pretenders

Just passed the 24 hour mark of being hooked to chemo and 36 hours of being in the hospital. It has been a long day and a half. Yesterday at 7 am I was here bright and early to get my "port" placed. A device that provides those with needles and drugs to always have access to my sweet veins. I was under conscious sedation for the procedure but awake to be aware of what was going on. There was a lot of tugging while they were placing the port and I could feel the blood drip, drip, drip from my jugular vein where they inserted the catheter of the port to have central access. Good thing there were no vampires around (comment intended for you true blood/vampire fans). The port is just barely under my skin in my right upper chest. It is quite pretty, a metallic purple but you can't see it of course. It is however called a "Power Port". It requires me to carry a special card to prove that I really have the "power port" I like the name because I really feel like I am one step closer to realizing my childhood career aspiration of becoming Wonder Woman. I would also like to throw in that I am one step closer to Bionic Women too. After receiving my power port. Ooh, I felt so imPORTant. Okay there was a long list of bad port jokes that hubby had to endure, but he was supPORTive. I sure am easy to amuse. I was discharged at 11:30 from raidiology with no room to go to for my chemo infusion. I was wheel chair bound so B pushed me around the hospital we went and visited the good 'ole School of Nursing where it all started. The halls were the same institutional white, no windows, lined with florescent lighting, very stale. However, I have fond memories of going to class and being excited about what we were learning. Spending hours in the library. Going back to school someday is a day I look forward to.

So around 1:30 I was given a room. Then had to be admitted and assessed by the fellows/residents ect... The fellow was very knowledgeable about all the meds and answered all of my questions. The other resident gave me the sad, dooms day looks, and asked sadly "how's your son". Guess what lady I am alive! Anyhow after a 3 plus hour wait for Pharmacy to mix my medication I started the infusion yesterday at 7pm which set me up for a discharge target for tonight around 10 pm. Oh, another medical highlight. The nurse providing my care during the port placement was nice but after the procedure I told her I was a nurse and she said "You should have told me you were a nurse and I wouldn't have talked down to you as much". Survey says, "wrong answer". She actually did give me a survey to fill out. Am I a bitchy patient? Am I needing control and picking on the medical system and its employees, or is the system the problem. Yes, Yes and Yes. And there was a full moon yesterday which makes for crazy times in a hospital.

Taxol drug is now in, I had no reaction what so ever. Taxol is derived from the bark of a western yew tree. B and I looked it up on line and it is a very pretty tree with bright red berries and orange bark. I guess they are a rare find. I have a very flushed face right now for an unknown reason. Well maybe because I just had 20 hours of poison infused into my body. Now I am getting Cisplatin after being loaded with Aloxy and Amend, two anti-nausea meds and some steroids. Tomorrow I get one more medication, Avastin which is recommended I stay on for a year. In summary it decreases the vascular activity that can lead to tumors, however in relation to cervical cancer it is uncharted territory. My Gyn/Onc said it worked on one women who had cervical cancer metastisized through out her body. My labs look excellent. My white blood cells and Hemoglobin were a little low and that was it. They also did a CA-125 lab which is a cancer marker that is used in ovarian cancer, I am not sure if it will pertain to my situation but we shall see. It was within the normal range, so there's a baseline. So you microscopic cancer cells your days are numbered.

Note to Nurse self: someone please develop a pump that when IV tubing has air in it or is complete it will alarm at the nurses station not next to a patients sleeping head. Also, have inservice for nurses how to trouble shoot tubing and pumps.

I do feel that our ceremonious party, The Bald-n-Bash, empowered and relieved me of some of my burden. I will expand further in another post about the toilet smashing extravaganza. pictures to follow, movie and soundtrack are being created.

Here is part of what I shared at the event. It sums up how I feel about life these days:

Life is glorious, but life is also wretched. It is both.

Appreciating the gloriousness inspires us, encourages us, cheers us up, gives us a bigger perspective, energizes us. We feel connected. But if that's all that's happening, we get arrogant and start to look down on others, and there is a sense of making ourselves a big deal and being really serious about it, wanting it to be like that forever. The gloriousness becomes tinged by craving and addiction.

On the other hand, wretchedness--life's painful aspect--softens us up considerably. Knowing pain is a very important ingredient of being there for another person. When you are feeling a lot of grief, you can look right into somebody's eyes because you feel you haven't got anything to lose--you're just there. The wretchedness humbles us and softens us, but if we were only wretched, we would all just go down the tubes. We'd be so depressed, discouraged, and hopeless that we wouldn't have enough energy to eat an apple.

Gloriousness and wretchedness need each other. One inspires us, the other softens us. They go together.

Excerpted from "Start Where You Are"
by Pema Chödrön