Once upon a time……

There was an intelligent and reasonably attractive plump little grandmother with life altering chronic illness (she never liked the word “terminal”, after all everything ends and she did not love redundancy just prodigious verbiage) who lived with a roommate and their dogs.

Wolves prowled at the door constantly but so far they had been kept at bay enough to keep a roof over her head; faith and good nutrition were the only answers still available (not one to do something medical just to be doing something) at this point for her issues but she still was functional so she didn’t mind.

A Prince had recently been hanging around her cottage and she was enjoying the company and attention, and well she loved her life even with the wolves and owing all the villagers.

However, she did not want her story to end, and knowing that what keeps a story going is the next great adventure, the grandma sat down to plan hers.

First she opened her “20 Wishes” book……

I love the song “Both Sides Now,” I know, it is definitely not a Christmas song and the song itself is currently most heard in elevators but boy is it more accurate for my current state of mind than any Christmas melody.

Here is the label caution, don’t read any farther if you want to live in the lovely state of denial I prefer, that place where clouds are feather canyons everywhere because today I am going to tell you about the other side of chronic illness.

1. It’s lonely.
Don’t get me wrong, I am surrounded by love pretty much 24/7. There are all kinds of people willing and ready to do for me, take care of me, and generally be the hero to my needs, but far fewer who will just be my friend, who will trust me enough to take back from me what I can give. Few people who will just have a regular conversation that might actually include the indignities I live with and maybe even laugh with me at the worst of it, and understand when I am angry or cry.
It is also much harder to find in my old circles any who can find the grey area between my past overachieving independence and my current partial dependence. Most would rather do for me, than do with me. I am treated like I am fragile which feels like sub-par, broken and incapable.
Money is beyond scarce, I survive due to the kindness of friends; and my friends are all prosperous so not only can’t I not afford to do the things we used to do together, there is the dynamic of guilt if I spend any money on fun, not to mention I am just not as easy to be around as before, and often have to say no, so I just don’t get invited. (So not to insert a happy note in this diatribe of despair but I do have a core group who have watched movies at home complete with popcorn, played board games, and even supported my lego habit while letting the conversation go where ever it wants, I am really, really lucky and blessed, not everyone has such awesome friends.)

And this is just friendship, now think about being single, and dating.

How do you even have a first date if you are asleep every night by 8? What date is the right one to tell them that even if I get “cured” that my body is scarred, that I have to wear poise pads before playing anything like CAH or Apples to Apples because I will laugh hard enough to pee myself. Lets talk about if it is near a treatment day: there is something worse for your date to be wearing than granny panties, like you know, Depends.

So I look for friends and flirt but inside I know that it will go nowhere because I am not brave enough to risk that rejection and because I wouldn’t wish my reality on anyone. If I really cared about someone, how could I sign them up for the financial, emotional and physical realities of living with (not dying from) cancer.

So it’s lonely.

2. It’s painful. Every breath I take is a 3/10 today, when I cough my head throbs at a 10/10, my mouth and throat are peeling and have small sores everywhere. I am in pain so much of the time when I am not, I just lie still and savor the moment or two before moving. I use everything I can in my arsenal except narcotics, everything from Tylenol to meditation to acupressure to chiropractic care and manage to remain smiling and functional. If I am awake between 8 PM and 4AM, its pretty much due to pain.

3. It’s embarrassing. I cancel plans, I forget things, I say things wrong. I was a a truly dear friends house the other night, and I still don’t know what she heard.

I know what I meant to say, I was picturing both of us completely healthy six months from now, and I mean completely healthy, because what I give energy to, grows stronger and tried to say, “I just know this will all be over, I’ll still be here (yes, I do think about the possibility) and I can come over and we can roll around on your bed just for fun,” making fun of the hardest parts of hospital level helplessness. It came out wrong I knew by the look on her face.

I do that a lot more than I used to; I spent years learning how to interact beyond my introversion and that is less and less smooth. So I pretty much just open my mouth these days to change my shoes.

And my breath smells bad, and my body odor is worse, and I have issues, think low grade flu or morning sickness for weeks at a time.

Yup, it can be really, really embarrassing

But this is enough “reality”.

You want to know how I really am? I am just living my life. I don’t deserve pity or hero points. Most of us have things in our life that suck as well as things in our life that scintillate and inspire. These just happen to be the sucky parts for me.

So I am fine, in fact I am good.

Maybe I can’t do 60 hours anymore but I am working 30’ish at a job I love. Maybe a few friends have peeled off like an old scab from the wound of caring about someone who is sick, and maybe I won’t have a romance in my future; but I have some amazing friends among those who have stayed, and new friends who are either just ignorant of my situation to treat me like a regular person, or who have enough experiences in their past to not let it bother them.

I am lucky. I have great doctors, a roof over my head, and can still walk, eat, think and speak in my new normal.
So that my friends is how I “Really” am.

I know, I know, some of you want gory details or a prognosis or something to in anyway predict, define or control this process; well welcome to one across the board uncomfortable reality of anyone living with cancer.

How does it feel to want and wonder?

November is ending and tomorrow begins 31 days of secret Santa adventures with one very special RAK per day, so tonite here it is in its entirety, My 2014 Gratitude List!

1. I am grateful for a roof over my head, a bed to sleep in with pillows and blankets and everything.
2. I am grateful that food is readily available, and through the miracles of indoor refrigeration and gas/electric ranges we can prepare a meal in under an hour.
3. I am grateful for libraries and the easy access I have to the written word.
4. I am grateful for my senses of sight, smell, touch and taste, and hearing.
5. I am grateful for music and a lifelong exposure to many genres allowing me now as an older American to find joy in not just the familiar but also the challenging and new.
6. I am grateful for my style of cognition, took me years to not only be comfortable with, but embrace, my own perspective on the world. I will never understand things the way others do, and there may be many things I do not understand, but I am happy to see music and emotions, feel colors and tastes and smells. I am grateful to be me.
7. I am grateful for the amazing and unique geography, flora and fauna available through just walking around in my state of residence. From the far but internationally known Sky Islands to the red rocks of Sedona and Grand Canyon, and well represented by the local Riparian Preserve and Mountain Hikes, Arizona has a magical and immensely varied beauty.
8. I am thankful for local Bookstores like Changing Hands in Tempe where the epicureans of devouring a good book can provide me with a menu of all the special flavors of yet untried authors and genres.
9. I am thankful for Goodwill and Library sales where I can find old favorites on Vinyl in a price range I can afford, like these Tex Ritter 78’s.
10. I am deeply appreciative of my experiences in the workplace as a nurse; there have been a couple truly poor fits which make me appreciate my current workplace MGA HealthCare and my previous Hospice of the Valley so much more. I am thankful to work in a patient centered healthcare environment.
11. I am grateful for friends who accept me as I am all of me the geek, the nerd, the genius, the compassionate, even the scared and broken parts. In friendship, my glass is always almost full if not spilling over onto those around me!
12. I am grateful for some farmer who nurtured and harvested these beans, the local hands that roasted them perfectly, the miracle that I can throw some of them, a couple cloves and cardamom and cinnamon in my grinder, run water from the tap and minutes later have the miracle of spiced coffee.
13. I am thankful for a truce between Pirate Cat and me, and all the affection Pele shares, and that they both could care less about my dogs.
14. I am grateful for fresh Pomegranate in the mail from a friend, snail mail get-well cards, the donations through my Blog, the anonymous donations and the in person visits and help through the most difficult of years. And I am almost grateful for this opportunity to learn how loved and blessed I really am in a truly George Bailey moment.
15. I am grateful for the ability to walk, run, pick things up and generally use my body parts in the way they are designed, that I breathe without a ventilator, eat with my mouth, and that my body excretes through natural channels. What a miracle with so many systems, so many of us remain functional for so many years.
16. I am grateful for the internet and all the minds and hands and genius that went into connecting us with so much information so readily, providing new artistic outlets, new ways to make friends and new ways to be a friend.
17. I am grateful for Christmas music, Christmas movies and bright Christmas decorations and its yearly reminder that unselfishness is cool, that it really isn’t about what we get but what we give that matters, and that magic is real. Believing is Seeing.
18. I am grateful for silence, meditation, calm, quiet, alone, peace. In this I must also say I am grateful for early mornings when walking outside it is still darkish and only an occasional bird warbles its morning sound.
19. I am grateful for making a difference in other lives, both the big ways (back at my patient’s yesterday and she was kind of happy to see me) and the small ways (letting old blinker guy in before he crashed into somebody) and knowing I am appreciated and loved by my friends, my patients and even some family.
20. I am grateful for my ability to feel pain and the protection it provides, like an over sensitive smoke alarm of the body it sometimes yells for no reason but more often it keeps me from burning myself, breaking something or otherwise permanently my form or function.
21. I am grateful for difficult people; they provide a loud living example of wrong responses to situations I will never have to try for myself. They teach me patience, compassion and forgiveness; the three most important attributes I cherish.
22. I am thankful for the dark days of loss that create the nights to dawns like today, and grateful for all the loves and laughter each dark night draws to a close, for memory and the ability in memory to relive the good parts and know again the joy.
23. I am incredibly grateful for libraries where books and books and books await my eager consumption for no more cost than my time. Libraries are my longest happy relationship.
24. I am thankful for dreamers and their dreams and their persistence to bring their dreams to fruition without which everything from my new awesome Starchild book to the truck that delivered it would not exist.
25. I am thankful for knitting, sewing and crocheting; they connect me to warm and wonderful memories of my mother, my good foster mother, and missed grandparents but also are soothing and repetitive when needed and challenging when that is needed and provide a solid sense of accomplishment as well as a creative outlet.
26. I am grateful for coloring books and crayons and colored pencils and scissors and glue and paper dolls and origami and all the other non-verbal ways I can play and create for little or no expense, but especially grateful for Mosaics and collages that remind me over and over again that broken things are just the materials for new beauty.
27. I am thankful for my children and how well they all have turned out as adults; I am thankful for their health and wisdom and hard work and general awesomeness.
28. I am thankful for the opportunity to be a Nanna; both because it means I lived long enough to have that title and because Archer, Bam, and Tam are the most fun I can legally have!
29. I am thankful for still experiencing failures and disappointments; each time I fall short of my own expectation I learn. I am thankful for this proof that I am still growing and changing as a person, and for the internal realization that every bit of brilliance, heroism, or just good story in human history is the culmination of repeated failures. So here I am also thankful that in life review I can see I have had a few of those moments of brilliance as well.
30. I am just so thankful for friends of all caliber and kind. My life has bumped up against so many other lives and I always come away a little better for the experience. I end this month saying thank you to you who have taken the time to read this very long litany of the lucky thing I call my life.
if our friendship is an old one, or new one, or just that of writer and reader, or maybe you are one of the relationships from which I learned forgiveness and patience, doesn’t matter, in reading this you listened, and listening is a gift for which I am most grateful .

Namaste.

Some nitty gritty details, may be better to read this later, read now only if you are dying to ask me questions.

Some questions are put to me with honest concern, and those I have appreciated. Thinking of you Pat and Sara, I also have appreciated reminders of important things I might forget. Mostly because they were done truly out of love and concern for me. Stress adds to my already sketchy memory, and certain questions do need answers.Even though I don’t resent them, answering them over and over keeps me focused on the worst possible outcome. What we feed, grows stronger.

I am a dandelion, I am the old guy from The Milagro Beanfield Wars, I am hard to get rid of, I just come back.

So, to prevent having to answer them again,

Yes, I have filed for disability

Yes, I have a will.

Yes, I have a Directive and Power of Attorney on file at the VA.

And yes, I do trust Rick, my son who holds that power, to respect my final wishes. We may not be as close as I would like, but I trust and love all my sons and know they love me. I want to be alert as long as possible, but if I am no longer alert, I want no interventions except oxygen, and control of pain and anxiety, and they know that. However, don’t get in their grill if they make decisions you don’t like. If we get to the point where I am not making my own decisions, my sons are about to lose their Mom, and they have to live with that for the rest of their lives so love them the way I love, openly and unjudgemental.

When I am dead:

No, I really do not want a funeral. But if someone needs one for their own closure, they can host a get together of friends they know and have a memorial party with music, boardgames and beverages; or they can go to Disneyland and ride through “Its a Small World” singing all the way, or volunteer somewhere.

Just remember the whole me and laugh some. I do want to be cremated as cheaply as possible, as a Veteran there is money to cover that, the I hope as I go back to work here shortly to not only pay off my debts but get this detail payed as well.

And maybe, if you can, a tree planted down south.

But most importantly, Be Excellent To Each Other!

Taking a break from my Nanowrimo writing to blog…

So here is my health update and a wish list and a really general but heartfelt thank-you.

But not in that order.
First and most important is the thank-you. Name mentions would take up a whole page from donations of money, time, and love to the actual back breaking work of moving me (Yup, those ones get named, Thank you Sara, Jennifer, Pat, Regina, Anne, Amie and Bob, packing and moving me yet again is honorable above all honors, the purple heart of friendship is yours.)

Thank you for reading this. When I see you have clicked or commented I feel seen for a moment as a person, not just as a disease, or a role, or an obligation, just a person you are listening to via your eyes, for the few minutes it takes to read this. We are losing that ability to pay attention, so I appreciate it even more and strive very hard to give my attention back in kind, not just to those who see and hear me, but to the ones who don’t as well.

Now a wish list because the first two things out of everyone’s mouth are “How are you,” and “What can I do?”

The socially appropriate part of me wants to answer in my Pollyanna Personna, “Oh I am really great, considering everything!” and follow, “Oh, I got this.”

The somewhat angrier part of me wants to say, “Actually I am in pain most of the time, tired half the time, and pretty much numb, laughing or crying all the time while I reboot to my new normal; but you don’t want to know that, so tell me which do you prefer a smiling recital of gossip worthy juicy details of how my life is falling apart and where I am to blame or a tearful recital of how I am a victim? Which would help you manage how you are feeling about what is happening in my life better so you don’t feel any guilt or need to inconvenience yourself in any way?”

Yup, my angry woman is not real nice, honest in a mean way.

Except pure mean is not really honest either, and the thing is I have made choices that helped and choices that hurt my situation as I will continue to do till I am dead, and the one choice I can make is how I respond.

So I thank everyone for their concern. And here is how I really feel, I am in pain a lot, and a lot more than I have ever been before and since it is in my back and around my heart my activity has been limited, but I am working with a physical therapist and some none traditional methods, including eliminating many foods that increase inflammation still in my diet (like tomatoes and strawberries! Sad Face!) so I can achieve some remaining goals. I look very round when you see me I know! Go inactivity, emotional eating, antidepressants for the stress and steroids! I have an MRI scheduled as well as other things to plan a palliative track for myself. I know that everyone, myself included would love a little calendar of when each stage will happen but all I can tell you is we are all dying, so stop looking for my expiration date, its already passed, LOL, just enjoy the fact I am still here.

What do I need from you, mostly to invite me to do things and offer to drive and pay or if that’s not possible walk the dogs with me and play a board game or two with me. I need all the movement I can get, and the human company however I am not working so recreational spending is out of the question, and often driving itself makes me worse and prevents me from using some of the pain relief I have available. But I am not dead yet, and living is where its at!

If it is hard to fit personal time into your schedule and you have financial wiggle room, Feel Free to Donate here or in other ways. I have had balances paid anonymously at the VA and in rent, I have had people make surprise Costco runs for me, I have also received gift cards for Harkins, Trader Joe’s, Kohls, Hobby Lobby and Target that have fed, clothed and kept me clean. All of this was greatly appreciated. For my storage unit information feel free to coordinate with Jennifer Morrow or Sara Rebennack and rent there is very needed, my guess is at least a couple more months worth.

But what I need most is for you to talk to me, not about me; realize as hard as all this is for you to deal with, I am living it 24/7 and right this moment I just don’t have the ability to comfort you about me, however nothing makes me happier than being of service, so please let me listen to things about your life. And please forgive my shorter temper and way shorter memory, and be patient as I work on moving into the new norm, I know I am pretty self-absorbed right now, I am working on it.

Things I don’t need from you.
Don’t judge me if you see me spend time or money on something you don’t deem important, or if you do keep it to yourself. I dare you to go through my 2014 and do better than I have.
Don’t ask how long or tell me cancer stories. Please.
Don’t tell me how to fix this unless I specifically ask your advice on something I feel you have expertise that I don’t, I have an amazing team, and too much information already in my head, with lots of things I can’t control and too many decisions to make and a long history of PTSD. So when you start telling me how I should do this, or shouldn’t do that, you add to my stress level immensely.

Feel free to laugh with me, a lot. Things are pretty funny still, all the time.

And hey, I am a dandelion, so I could still beat this. 😉