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    When I decided that I was “not —-ing leaving the planet” because I was going to raise my kids, I had no idea what that would wet hugactually look like.  It didn’t matter.  It was a gift to anticipate, a package to open when the time was right, and I was determined to be around to open it.  I was mostly concerned about my children growing up without me.  What I didn’t think about at the time, but am thoroughly enjoying now, is what an absolute blast they are.  Teenagers are crazy and wonderful.  My mom refers to their “demented energy”.  Yes!   As long as I  maintain my sense of humor, I ride the tougher waves relatively easily.  I find that true of most things!

    You’ve probably heard of the ALS ice bucket challenge.  I wish I’d thought of it for IBC!  Anyway, I’m glad.  I had to have my dunking, but I didn’t mind.  The picture to the right is of my daughter, my son, and her friend.  They were nominated for the challenge, and recruited my son to dump the ice water on their heads.  After he did his brotherly duty, my daughter’s friend shouted “Hug!” and they chased him down.

    They tickle my funny bone and exasperate me daily.  My son thinks “school is stupid” and tested out early.  My daughter has decided she’s going to Columbia University (now I’m sweating bullets) and after years of constant squabbling, they are good friends.

    When I was fighting cancer, I didn’t know entirely what I was fighting for.  I was fighting for the surprise, for the unopened gift I didn’t want to miss out on.  If you are currently in the fight, whether a cancer, depression, or just a rotten day, remember that none of us can predict how good it can be!  So, if it sucks right now, take heart.  There is no limit to how much better it can get.

    If you want to see me get dunked, follow the link to my facebook page.  She who nominated “Mama Danu” (Emily…an exceptionally good kid) thoroughly enjoyed sopping me when I started to run off at the mouth.  Her mom and my daughter are laughing in the background.

    I love being “that” mom!

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    Well, one teen and one pre-teen. She’ll be 13 in August and she’s practicing.

    This morning I was appreciating that I didn’t have to rush so much, not the way I did in the pre-cancer days. I would, like so many parents, get myself ready for work and get my offspring ready for school, then race out the door for a busy day and not get home until the day was done. I have it set up differently now.

    They get me up. I make coffee for me and tea for them, and see that they are well fed. I pack her a lunch and give him lunch money, which is how they like it. I enjoy my coffee with them, and then I take him to high school and her to middle school. Sometimes the journey is friendly, sometimes not, usually amusing if my sense of humor is intact (sleep?). I get home and leisurely prepare to work. I either prepare to see a massage client, do some writing, or work on theater stuff for the drama club at the elementary school. It’s lovely. I am tickled to report that as of today I have replaced all the income I will lose next month when my disability expires. I have added four hours per week at the children’s hospital, and I am getting some new clients. How can I not believe in a benevolent universe?

    This morning was hilarious. My daughter, the great leaver of messes and trasher of the car, was berating me for a banana peel that I had left in a Starbuck’s cup that I then threw away. An exchange ensued, wherein she was reminded by her brother and me that she uses the back seat for her own private closet. As the volume and irritation began to crescendo, my son began singing “love is in the air” plaintively. After we dropped him off, my other child leaped over the seat into the front. It would not do to arrive at Middle School being visible in the back seat!

    When we arrived, she announced that she was going to “chill” for a moment. I stopped the engine, and she applied lip balm, sent a couple of texts, and enjoyed her favorite tween song (boring) on the radio. Then with a great flourish she exited the vehicle, it seemed to me to greet her fans.

    I sat there for a moment and thought, I could have missed this. I wouldn’t have even known what I was missing.

    I thought of my friend Susan, who had to leave her babies while they were in kindergarten. Sometimes life is unbearably cruel, even in a benevolent universe.

    Today, if the rain gives us a break, some 2nd and 3rd graders, 4th and 5th graders, the choreographer and I will dedicate a school garden.

    Life is ever so sweet today.

    Wow, has it really been over a month since I posted?!!! I’m shocked!

    I guess I hit the pause button for awhile. I’m actually full throttle into rebooting my family system. (Really!) I just posted over at Everyday Health about how cancer has affected my family. We are still dealing with it. My son is away at a Wilderness Therapy Camp, and we are engaged in doing everything we can to make sure that the courageous work he is doing up there in the Oregon desert is going to stick.

    So, I’ve been in Mom mode, guiltily ignoring all the goings-on in the cancer world, to focus on my family. There is a lot going on, lots that I have something to say about. I write long posts in snippets in my head. But alas, there is only one of me, so I have to focus on one thing at a time.

    One of my online buddies that I’ve never met has posted about this. I have had it up to my eyeballs with chemo-brain. I am trying to do my Mom thing, do my work, focus on my family, get things done. My family has been deeply affected by Mom fighting for her life in 2007. I am always grateful, every day, that I survived, and am still surviving.

    I’m not the same, and sometimes that really pisses me off.

    This last weekend I made a mistake at one of my jobs. I wasn’t on top of my game. In the past, I was known as someone who was pretty sharp, had it together. I could hold several big pictures in my mind at once, and fish in my brain for the vast databank of details. A boyfriend of mine used to call me “computerbrain” with great respect. No more.

    I lose details. I don’t remember routines that are new. My hands know how to do the things I’ve done for years, but yesterday’s instructions get lost in the muck. I make many more mistakes than I used to. I affirm to myself that I never make the same mistake twice, and mostly that’s true. When I discover that my overloaded hard drive missed something, I create a system externally (like a list, or an alarm on my phone) to make sure I don’t repeat an error. Unfortunately I make errors. Lots of them. This is not like me and I’m struggling with that.

    Other people really don’t get it. If I joke about having a mind like a sieve, I’ve heard, “I never had chemotherapy and my brain is like that too”. (Quitcher bitchin’, you’re just a ditz…)…

    It’s not the same. It’s frustrating. Other people think I’m a flake. One of my colleagues thought it would be great to make an example of me, so I can feel real bad.

    Cancer is the gift that keeps on giving. After you survive it, the treatments you had can give you a new one. Your brain may never recover. Your children grow up before they are supposed to. I feel guilty bitching about it, because I’m alive, which is more than many of my fallen sisters and brothers can say.

    It’s not black and white today, it’s gray. I can rejoice that I live, and mourn what I have lost. It’s gone, never to return, and that’s just the way it is. My left arm will not be strong again, my brain will not be sharp again, although both can work very well under the right circumstances.

    Tuesday evening I will get on a train and go to Albany Oregon, where I will see my son for the first time in three and a half weeks. He has been in the high desert with three therapists and five other boys. He has cooked for himself, made his own shelter, and explored his hurts bravely. I can’t wait to see him. I am so proud of him.

    And while I am feeling guilty for dropping out, I notice that my community is still here, the community of people determined to live well after and in spite of cancer, to help others to do it. I love to see my friend’s comments here. I have a guest post coming, waiting for me to catch up with myself and share another perspective. I’m honored that another cancer warrior wanted to offer her story on these pages. One more inspiring story, coming up!

    None of us are alone. If the rest of my world doesn’t understand chemo brain, at least my cancer warrior sisters do. Yes, they do.

    Onward…

    Chemotherapy is a task that can’t be done alone.

    It takes a lot of people, doing a lot of things, to help a loved one cope with cancer treatment and allow her or his body to cope with the treatments and heal. Community is essential.

    I became familiar with Lotsa Helping Hands when a friend of a friend was diagnosed. I did not live very near to her, but I could be in communication, and everyone who was able to help her with all the gazillion things that needed doing had a way to keep it organized.

    If you’re facing cancer treatments and are willing to say “yes” to all the help that people want to give, you might benefit greatly by forming an online community. You don’t even need to be computer savvy. Just the person you put in charge, and I highly recommend that it not be you!

    If you are someone who wants to support a loved one and don’t know how to go about it, once again an online community can be a huge help. The patient lets everyone know what is needed, and the community fills the gaps.

    The benefit of this is not simply logistics. It is also support. My Caringbridge journal provided me with this, and I had Susan Moore Rodgiguez (5th floor charge nurse and resident angel) organizing food delivery, and I was able to organize child taxiing and care.

    It is deeply healing just to see how many people are willing to jump in and help! You wont know unless you ask. If people are given a way to find their helping niche to show their love and care, they are happy to do it.

    Lotsa Helping Hands is a great resource. I’ve included the link here. You can also simply set up a mail list (someone other than the patient in charge!) or, I’ve seen Caringbridge sites used in this way as well.

    Most of all, don’t be afraid to ask for, and receive, all the help that people want to give. It’s good for them, and will make all the difference for you!

    http://www.lotsahelpinghands.com/

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    As I am settling into the blogsphere, I am being initiated into unfamiliar territory, the slimy underbelly of comment spam.

    These spammers are so crafty!  They have their canned complimentary comments that they inundate me with, hoping that I will post their comments along with links to their sites.  The clue I get that they are spam are the following:

    They are highly complimentary without being specific at all.  “I could not have found the information you have provided anywhere else”  or “I really love your blog and am now suscribed, keep up the good work!”  Ah, the proud blogger is pleased until noticing that these exact comments are coming in from multiple sites.

    They indicate a problem which it is imperative that I solve, by publishing their comment.  “Your feed does not seem to be working, is it your site or my computer?”  Answer:  I have subscribed to my own feed on all three browsers and I know they work, thanks so much!

    Another approach is to try to get me riled up.  “Can I place some of your post on my website if I link back to your site?”  No, duh, it’s copyrighted.

    Or, my favorite:   “I have submitted several comments which have not appeared here, is there something wrong with your spam filters?”  Dude, I am the spam filter!

    Why is this relevant you may ask?  Well, actually, pondering why I am so annoyed made me think of how spam gets into my life, and why I hate it.

    Spam can be annoying communications that require a response, which are a waste of precious time that is better used for other things.  Do you have any of this in your life?  I do, although a lot less than I used to.  Spammers use any method they can think up to get your attention, so you’ll buy something, do something for them, or provide a way for them to get what they want.  Do know any people like that?

    What this reminds me of is the importance of valuing my time and energy, whether anybody else does or not.  Of course the irony of this is that the more I value my time and energy, the more others will value it.  The spam filters work better as they identify what is spam.

    My personal spam filters:

    Guilt and shame indentifiers.  If guilt and shame are present in the communication, I’m not playing.

    Resisting snap decisions.  When someone wants me to do something and they want it right now, I insist on taking time before deciding, and I tune into whether I really want to do what I am being asked to do, and why.

    Willpower!  Just because I would like to spend hours noodling around on the internet doesn’t mean it is the best use of my time.

    Supportive people in my life.  These people remind me what healthy, mutually respectful relationships feel like.  I gauge other interactions by this positive experience.

    Caring for Me time.  The more rested, balanced and centered I am, the better the decisions I make about anything in my life.  I make time for real sustenance, not spam.

    Real food is good for you, spam will make you fat and lethargic!

    Real food is friends, creativity, meaningful work, walks on the beach, children (insert your real food here).  A steady diet of real food, with minimal spam, keeps me strong, healthy, and loving life.

    Just say no to spam!

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