Showing posts with label breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts

Friday, May 30, 2008

Phew

Phew is a little trite, but there it is.

I got a message today from my oncologist's office (lovely Betsy) to say that my tumor markers are all excellent, well within normal ranges, and that everything looks normal. I was told "See you at your next regular check up - have a great summer!" and this, needless to say, is excellent news.

But when I heard Betsy's voice on the phone, and she said she had an update for me, in those two seconds before I heard the good news, my stomach clenched and my blood pressure shot through the roof and my brain shut down. The good news helped me to breathe again, but the physical effects of the fear are real, and they will take a while to go away.

This, in the middle of a good day. Tessa and I spent the day at "Grandma Dorothy's house" - Grandma Dorothy is the preschool teacher's mother, and she comes every Friday to the school to read stories and deliver home made cookies made in the shape of the theme of the week (a bat, or a salmon, or a spider, etc.). All of the children adore her, and going to her house was a real treat. Dozens of children, with almost an equal number of parents, played on the beach, BBQd, and enjoyed the day.

Once home, Tessa and I ran errands (including a fun stop at the used book store to pick up some new books for Tessa - bargains because we have store credit) and went grocery shopping.

And now we're waiting for Ryan to come home, and the weekend to begin. Dave Matthews is singing on the radio, the sun is shining, and the grill is waiting to cook our burgers. Maybe we'll go to Ercolini Park after dinner, or maybe we'll sit in the hammock, or maybe we'll play Go Fish at the outdoor table....but whatever it is, I'm looking forward to it.

And I'm trying to remember to breathe again, to not focus on the fact that I actually HAVE an oncologist, or why, but instead to focus on the good message.

Phew.

Tuesday, May 27, 2008

Flying Solo

Today I visited with my wonderful therapist (psychiatrist, to be more precise) Dr. Baer for the last time. Dr. Baer is moving to another state, and I for one am sad to see her go. She has been instrumental in helping me to learn and grow and come to new levels of acceptance about my path, and I am extraordinarily grateful to her.

I am going to miss her.

I am trying to reach the acceptance stage of my grief over the changes in my life that have occured since my diagnosis. I am trying to move on, recognizing that I am forever changed, and accepting those changes.

Some of those changes are physical. I am coming to terms, very slowly, with the fact that my reconstruction is not going well, and may never go well. Perhaps if I did another ten surgeries I could get to the place I thought I'd get...but I don't have it in me. I am making the choice to stop having surgery after the next surgery, however flawed my results may be. I am not going to be whole, complete, and pieced back together physically. In order to become mentally whole, I am going to have to learn to accept these physical flaws.

I can no longer delude myself that "one day this will be better." I promised Tessa that one day Mommy would have new nipples, but I forgot to say "in the right place" or "nipples that actually protrude." I thought I'd have a matched pair of breasts - sisters, if not identical twins - but instead I have distant cousins who don't even appear to know one another. Of course, the next surgery (October) might improve those things, but I am no longer counting on that. Anything that goes right in that regard will be a bonus, not an expectation.

And the physical symptoms that go along with treatment....I am learning to accept them, too. I have hot flashes so bad that I soak the bedsheets and find myself shivering in my sweaty, wet pajamas, unable to sleep I'm so cold. I'm accepting that a normal part of my life needs to be changing my pajamas once or twice in the middle of the night, just to be able to sleep. I am accepting that I am permanently fatigued, requiring MUCH more sleep than I used to (10 hours a night no longer refreshes me). I am accepting that I can not lift my arm straight up in the air. I am accepting that whenever I lift something, I get a simultaneously dull-sharp (don't ask, I can't explain it) pain in my chest where the surgeries have occurred. I am accepting that my menopausal skin is dry, flakey, and prone to acne (you've gotta be kidding me! - wait, I'm supposed to be accepting here....). I am accepting that I am well on the way to osteoporosis.

Or am I? I'm not so sure. When I write about this list, I realize I have to stop before I remember the rest of the list (achy joints, thin eyebrows, new facial hair NOT in my eyebrows, a keloid (?) scar on my eye from the surgery to make nipples, difficulty opening jars or doing other simple tasks because of lost upper body strength/damage.....shall I keep going? there's more!) because I don't really accept it. Who could? But I'm trying. I am really, really trying. And I"m closer than I used to be.

(I can not yet learn to accept or embrace my forgetfulness. Mid-sentence, I lose track. I am told things, and I forget them. I have a harder time following complex ideas, or tracking lists of ideas, or even managing my calendar. This, I do not accept. "Chemobrain" implies chemo, and chemo ended 2.5 years ago for me. I am horribly disappointed in my lack of brainpower since chemo.)

People ask me, regularly, "How are you doing?" with that look of concern in their eyes. I try to answer truthfully, and I also try to be positive. I AM grateful to be alive - more grateful each day. I have overcome so much. I am grateful to be out of the worst parts of treatment. I am grateful to have whole weeks pass without doctor's appointments. I am grateful to have enough energy to be involved with things other than cancer.

I am grateful to be Tessa's mother, and to be Ryan's wife.

It's been almost three years. I am ready to move on to something new, and to take on different challenges, and to set aside the old challenges.

I am trying to be compassionate at myself, and to not judge myself too harshly that I have learned so little in three years. I am trying to be patient with myself that three long years have passed, but I still (mentally) reside in Cancerland. I am trying to be compassionate with myself so that I do not feel ashamed of my failure to escape Cancerland when so much is going well. I am trying to focus on the positive.

Tough stuff.

I am learning, though, and proud of that learning. My work on my personal environmental impact, my work in charity, my spiritual explorings, my involvement with community...all are part of finding my new normal.

Tonight Ryan's out having a bit of down time, and Tessa and I baked together after dinner: banana bread with chocolate chips (gotta use those bananas!), herb garlic bread (a nice change of pace from the whole wheat flax bread we're so used to), and strawberry jam popovers. Tessa helped to measure, stir, and blend, and got to sample the popovers for dessert. We had PEPS in the morning, and this afternoon Tessa went to preschool while I visited the doc. After preschool, we had some friends over for a playdate (and they brought their puppy, who looks just like Shep did when he was small).

Lots to be grateful for. I have moved ahead; despite my frustration with fatigue, I couldn't have managed this one day two and a half years ago.

I will miss Dr. Baer; she is bright, articulate, and compassionate, and she has helped me so much. I wish her well in her new adventures with family.

Wish me well without her - I've done so much growing in the past six months, I hope that I can keep momentum without her guidance.

Kristina

(PS Yes, I'll find another therapist. But those who follow me know that I've had TERRIBLE luck with therapists. They're expensive, and some have been harmful more than helpful. When I have to, I"ll find a new one. But right now it's too much effort.)

Sunday, May 25, 2008

Three years

Three years ago today I discovered a lump in my breast.

I wasn't diagnosed until June 1, but it's been three years since I've lived with the aftermath of that finding.

I'm too tired to say more tonight. I just needed to say something.

Wednesday, May 21, 2008

Aftershocks

I find myself just about falling apart tonight.

When I found the lump, the "real" one, it was right before Memorial Day weekend, and I had to wait over the weekend to find out what it was. It was what I feared most at that time, as we all know. (Now, I don't fear cancer the most. I fear dying. Cancer, I can fight. Dying, well, that's permanent.)

This was really, really deja vu.

And tonight I'm pretty much shaking. Relief, but something more. I can feel the cancer beast breathing over my shoulder, its nasty breath hot in my face, grumbling, "Not this time. Maybe next time."

Relief

I went to my oncologist, Dr. Rinn, today. I am declared okay. I can breathe again; I can exhale.

What I didn't say on my blog is that last week I found three new lumps, all in a row, on my "healthy" side. They weren't there, and then they were. They were hard, and visible when I looked in the mirror.

They terrified me. For a moment, my mind went to the darkest places - the fear of what would come, the gratitude that I'd had another three years with Tessa and Ryan after the initial diagnosis. I thought that if this were it, at least Tessa would have memories of me. It is not an accident that I carry my camera everywhere. One day, Tessa will know that her mother wanted to capture every moment, fully aware of how precious it is. If I am gone, the pictures will remain.

My mind visited these dark places and tried not to panic.

The bell curve of reoccurances shows that the greatest number, in my kind of cancer, occur between years two and three after diagnosis. My three year diagnosis anniversary is June 1, and I choked to think that I might not get to that anniversary without the reoccurance. I'm not safe after June 1 - it just doesn't work like that - but my risk decreases. June 1 this year is very symbolic to me.

But today, Dr. Rinn definitively stated that it was scar tissue and adhesions pulling on the expander. She was certain. She was not concerned. She told me to call tomorrow to get my bloodwork (CA 27.29) results back, but not to worry. She said to come back in November, after my next surgery, to get checked and to get another DEXA (bone density) scan.

I couldn't wait to get out of the building. Tessa was with me, so I put on my best Mommy face and tried to be brave, but it was all that I could do to keep from hyperventilating; tears were close at hand and I had to focus intensely to keep them back. It felt overwhelmingly terrifying. I think I can say that I HATE visiting there.

But it's over, and I was declared safe for the moment. I am grateful.

Grateful.

Saturday, May 10, 2008

Worth a little note

Today I stopped in at a 3-Day yard sale. I mentioned that I'd done the 3-Day before, and that I'd done a yard sale the previous two years. They said, "You spoke at camp! We heard you and you're the reason we're walking this year....we weren't going to, but you were so inspirational!"

It gladdened my heart in so many ways. I don't get a lot of feedback (positive or negative) from my public speaking; generally, I just speak, people clap politely, and then I leave, and it's over. It means more to me than I can say that my words made a difference to somebody, and changed their course of action in a way that benefits the world. You go, ladies! Three cheers for Team Hiking for Hooters. :-)

I will do the 3-Day again. Just not this year. Breast cancer has worn out my soul, and I don't have much to give in that area right now. I'll be back; I'm sure of it. But I need to get a bit stronger first, so that it doesn't drain me so completely.

Thursday, May 08, 2008

Getting back into my body

Today Tessa, Shep and I walked to preschool.

On the way back, a mere mile, I plugged in my iPod and jammed out to the tunes as I really stretched my legs.

IT FELT FANTASTIC.

I am ready to move again, ready to allow my body to move, ready to feel good.

October, and another surgery, looms ahead. But between now and then it's all about healing... again. It's about getting back into running. It's about beach days. It's about the tunes in my ears, the sun on my face, the wag of my dog's tail.

Ahhhhhhhhhhhhhh.

By the way, the first some that came up on the "shuffle" function of my iPod was "Joy to the World" by Three Dog Night. (I'm rockin' to the oldies these days, I guess.)

"Joy to the world,
to all the boys and girls;
Joy to the fishes in the deep blue sea,
Joy to you and me."

How apropos.

Ahhhhhhhhhhhhhhhhhhhhhhhhhh.

Tuesday, April 29, 2008

Another bee in my bonnet: Plastic

(Warning: Long and rambling post. I know, most of my posts should have this warning, but this one in particular. I "crafted" it as I was doing online research, and so it's a rather organic writing process, and rather un-edited. This one could stand some editing, but alas, it's time to make dinner. Editing later...or not.)

This time it's about plastics.

There are all kinds of things in the news lately about BPA - a toxic chemical - that emits from plastics. Plastics that are used for water bottles, and even plastics that are used for baby bottles. (I signed a petition, and found out today that it worked: Babies'R'Us has promised to eliminate bottles with BPA from their stores by the end of the year. I'm not even going to ask what makes them think it's okay for babies to drink toxins for the rest of this year, until the change occurs....but it makes my blood boil to think of it.)

Still, I digress.

All this plastic talk has me thinking. My "Cousin Diana" - a lovely, intelligent woman who is actually my mother's cousin - has done research on plastics for years, focusing on their toxicity to humans. She's been telling us for YEARS that plastics are terrible for us, and I confess that I've been slow to listen. Now I'm embarassed that I didn't listen better, because even mainstream media sources are talking about their levels of toxicity, and changes in production are being made. In the meantime, I've been injesting poisonous plastic molecules for years, thinking that I was "safe" because I didn't microwave plastics. Ouch.

And producing plastic produces toxins that go into our air, landfills, water. Ouch again. And most of the plastic stuff we use DOES go to a landfill, and rather quickly, where it does not degrade in our lifetimes, or the lifetimes of our grandchildren, or their grandchildren. Ouch, ouch, ouch.

So, today's project is getting rid of plastic stuff from my kitchen, and doing more research on BPAs.

According to the BRITA corporate website, their filters and containers are all BPA free. Excellent news - our family loves cold, filtered water. Still, I think that given that the production of those filters inevitably produces by products and the filters end up in a landfill, I'm going to phase ours out. Seattle has some of the cleanest drinking water in the world, and this is fortunate for us. Our water often tests "cleaner" than bottled waters, so it should not be an issue to discontinue filtering it. Instead, we'll drink tap water that we place in a glass pitcher in the fridge. Maybe in the long term we'll look at a permanent filter attached to our kitchen sink, instead of the BRITA in the fridge. (This works for us because our water supply is so great. When I've traveled in the US, I've been horrified at the chlorinated taste of some water supplies, and in Orlando I distinctly recall the chlorine/swamp taste of their tap water. If I didn't live here or some other place with "great" water, it would be worth it to filter my water, even if the plastic filter went into a landfill.)

Tessa sometimes drinks out of plastic cups, and they're OUTTA HERE. She's plenty old enough to drink out of glass, which she usually does anyway.

We sometimes store leftovers in plastic containers (Tupperware/Rubbermaid/Gladware/whatever), and I'm eliminating those, too. Costco sells a Pyrex set of storage containers that is a good deal, and it's now on my list. They have plastic lids, but still, this eliminates 75% of the plastic (glass bottoms) and the parts that the food touches are glass, not plastic.

I'm now looking for a good alternative for Ryan's biking bottles, which are usually made of cheap plastic (the kinds that SMELLS like plastic....if it's releasing enough molecules to smell, then isn't he drinking plastic molecules, too?). Any ideas? Our "Klean Kanteen" stainless bottles are great, but heavy for a bike. And Ryan drinks out of these bottles daily, so that's a significant source of liquid to him....and I want to keep him healthy. Ideas?

Not all plastics are labeled "bad." BPA isn't in all plastics. Still, I believe that more and more research will be done, and we will find that plastics are NOT benign, and that their production is intensely harmful to the planet, and their injestion is harmful to our bodies. I'm incredibly grateful for plastics, but I believe that we need to use them more judiciously. For example, I'm glad that there were plastic IV tubes to deliver my chemo drugs, and I'm glad to have my iPod which is partially made of plastics...but I'm convinced as well that we need to cut back on our plastic usage. Plastics aren't evil...but I think we need to think more before we create more of them or use them thoughtlessly. They do not come without a price, in my opinion.

And as a breast cancer patient, I'm particularly freaked out that BPAs tend to replicate estrogen in the body, and have been found in tumors. YIKES. I'm seeing some pretty big connections here.

(No, I don't think that we can say a simple, "BPA in plastic bottles caused my breast cancer." But I think we can say "It can't have helped and it may have hurt." It's a hurt I would have loved to avoid. I live with that every day - every day is side effect filled, and I don't talk about it as much as I used to, but suffice it to say that not a minute goes by that my cancer treatment doesn't impact me at a very real and present physical level. Ugh.)

I'm also looking into milk containers: it's often cheaper to buy milk in the gallon size, and our organic milk comes in a plastic container. Here's a radical stance:
http://www.mindfully.org/Plastic/Best-Recycle-Plastic.htm
This organization says that milk jugs are NOT recycled, and that they should be banned. Hmmm!

This website ("Treehugger" - you can guess their politics!) says something unexpected:
http://www.treehugger.com/files/2007/12/milk_jugs_lca.php
They say that it's actually more environmentally friendly to use the plastic jugs. What's up with THAT? Double "hmmmm."

This website talks about plastic recycling symbols....turns out that they label plastic types, NOT the recycle-ability of plastics. Great. :-(
http://www.obviously.com/recycle/guides/common.html

This (slightly off topic) article actually sums it up best for me, and makes the most sense:
http://www.guardian.co.uk/business/2003/nov/23/environment.waste
It says that "Both plastic and carton are cheap and technically recyclable, offering little potential for differentiation. But only carton comes from renewable resources."

I'm having a lot of trouble finding out if plastic milk cartons are healthy, or if paper cartons are healthier....but it seems clear to me that the production of plastics creates excess toxins (compared to paper) and are harder to recycle (the recycling process for plastics isn't all that clean) and plastics can only be recycled so many times before they must end up in a landfill (those labeled "7" are generally not recycleable). I did find out, quite inadvertantly through this search, that when temps are too low for new plant starts, a milk jug with the top cut off makes a perfect little greenhouse for plants to protect them from frost, so at least there's that!

And finally - paydirt! Here is the article I've been seeking:
http://www.greenlivingonline.com/Family/12-ways-to-protect-yourself-against-bpa-chemicals-in-plastics/
From this article, here is a list of 12 ways to protect yourself from BPAs:Protect you and your familyIn the meantime, there are steps that we can take immediately to lessen our exposure to BPA:
Use a metal or glass water bottle
Limit your use of canned goods or choose canned foods from makers who don't use it, such as Eden Foods
Learn how to cook your own foods that you typically buy in cans -- like beans or chickpeas
Choose soups, milk and soy milk packaged in cardboard "brick" cartons, by Tetra Pak and SIG Combibloc, with safer layers of aluminum and polyethylene (#2) that can also be recycled
Use glass food storage containers instead of plastic
Use glass baby bottles or plastic bag inserts made of polyethyelene, or switch to non-clear polypropylene bottles that are labeled #5. Don't buy canned infant formula.
Eat fresh foods in season to reduce your consumption of canned goods
Buy or can your own foods in safe glass jars
Stop using plastic wrap and plastic containers to heat food in microwaves. Ceramic and glass are better.
Throw out any old and scratched plastic bottles or plastic containers
Buy organic wine since many commercial wines can have up to six times the amount of BPA than canned goods
Let your grocer store know you want BPA free cans and are boycotting those products with BPA in them.

The media has focused on plastic baby bottles, but it seems that cans are perhaps an even bigger culprit (to those of us over the age of 2, anyway). Maybe this summer I should can (in glass) my own tomatoes, as that's a canned good that I use often....

And another fabulous document:
http://www.iatp.org/iatp/publications.cfm?accountID=421&refID=102202
This one breaks down the safe and unsafe plastics (as they are currently understood), and even has a nifty slogan to help us remember: "With your food use 5, 4, 1 and 2; all the rest aren't good for you." (My milk jug is a 2, by the way.)


(See? I'm the crazy lady, and getting crazier with every minute. What's funny is that I am starting to love being the crazy lady! I think that I've been crazy all along, and supressing my craziness is what was making me feel crazy. Now that I'm letting my crazies out, I feel much better. Look out, world!)

I'm not going to go 100% on this, because I need practical stuff, too. A few years ago I bought plastic dishes to picnic with, and when we have BBQs we use these instead of paper and plastic products. I think it's better for the environment, and hence my body, to use a reusable plate than a throwaway one, even if it is made of plastic. And there is no way I'm schlepping our heavy dinnerware up and down the deck stairs into the yard each time....it would look very Martha Stewart but I don't have it in me, sorry. (Send me a maid and I'll reconsider.) I'll still use plastic for our camping stuff, too, until we have budget to replace with old-fashioned splatterware metal ones.

I'll also keep a few plastic containers to transport snacks in. I still carry snacks for Tessa in my purse, and I'm not willing to risk breaking them, and I'm not willing to risk breaking my back carrying three varieties of glass with me.

So, I'm not a purist, but I think that I'm making great strides, none-the-less. I'm crazy, sure, but not a total lunatic (yet: jury's out).

Want to know more? Check out:

http://www.nytimes.com/2008/04/16/business/worldbusiness/16plastic.html?ex=1224043200&en=4d20b3af50fc113a&ei=5087&excamp=GGBUbpadanger&WT.srch=1&WT.mc_ev=click&WT.mc_id=BI-S-E-GG-NA-S-bpa_danger

and this older (2003) article:
http://www.foodproductiondaily.com/news/ng.asp?id=29616-potential-danger-in

Sign the petition to remove BPAs from baby bottles:
http://salsa.democracyinaction.org/o/1768/petition.jsp?petition_KEY=1177

Ready to make a small, small change? Do you read this and think "Okay, the crazy lady is changing her world upside down, but I'm not ready to go through the whole kitchen freaking out about this stuff!" Then start small.

Start by simply deciding not to buy bottled water, and to carry your own water bottle instead.

If you do that, you will:
- Stop putting plastic into landfills (please don't tell me that I have to explain why that's a good idea!)
- Reduce production of toxins into our air and water through production of those plastic bottles
- Reduce your carbon footprint (there are studies that show that a single plastic water bottle, of the throwaway variety, might as well contain 1/4 its volume in oil, because that is how many petrochemicals go into its production and transport for sale) and reduce our need for oil as a nation/world
- Help your body - keep the BPAs OUT of your body!
- Feel good. It's such a little, teeny tiny thing to do, but it makes a huge difference.

Want more information? Check this out:
http://www.refillnotlandfill.org/factslinks.html
I do see the irony of my posting THIS website on THIS posting. It's sponsored by Brita. I don't have anything against Brita, and I'm glad they're promoting something healthy....even if I'm not going to use their plastic products.) One of the statistics taken directly from that website is that, on average, each person uses 166 disposable plastic water bottles per year. Picture that in a big pile on your dining room table, and multiply that number times the number of people in your home. See why making a little change (carry a water bottle of your own) can make such a huge difference?

Oh, and here's the frugal thing, too. How much are you PAYING for that water? More than you pay per gallon of gas. Here's a secret: you already have water. It comes through a tap into your home. It's available in drinking fountains and taps at your gym. It's free at your office. You could save money by saving your body by saving the earth....and won't that make you happy?!

Have I convinced you yet? I'm getting pretty passionate here...have I lost you yet?

Ready to pick up a "safe" bottle for refill? I love my Klean Kanteen, and they're available on Amazon.com (we ordered one for each member of our family, and hence didn't pay shipping; there are greener companies than Amazon but I haven't got it all figured out); they're also available at REI (though in limited size choices). There are other brands, as well, that people love equally. I picked Klean Kanteen because it was less costly than some brands, and because stainless steel is so strong it doesn't dent like some of the others do/might do. (However, some of the other brands have very pretty designs painted on them, and mine is rather plain. I put two pink breast cancer bracelets on mine to dress it up and identify it as mine; Ryan has a yellow LiveStrong bracelet on his. Tessa has a smaller size one but amazingly likes hers plain.)




http://www.amazon.com/s/?ie=UTF8&keywords=kleen+kanteen&tag=googhydr-20&index=aps&hvadid=1165886681&ref=pd_sl_1idlvq8rei_b

http://www.rei.com/gear/feature/search/Google/bpa%20free%20bottles/?cm_mmc=ps_google-_-Category%20-%20Camp/Hike-_-Camping%2fHiking_Non_Toxic_Hydration_General-_-BPA&gclid=CPnjnIzVgZMCFQ5biAod4XNswg



And just FYI....just as a disclaimer: No, I don't have any product relationships, except with Genentech, the company that manufactures Herceptin. (Herceptin is my wonderful anti-breast-cancer drug - not the technical term! - and I'm a patient ambassador for them.) Any product that I promote here is because of personal preference, and any website I post is because I found it interesting or valuable, not because of any other reasoning. I certainly don't make any money from keeping a blog, and that is not my purpose here.


While I've been surfing for this information and piling it up in this post, Tessa and Anna have been playing. Now, life calls, and dinner must be made.


I won't even get into the fact that I spent half an hour trying to find shrimp from this continent. I ended up buying shrimp from Bangladesh...or is it Thailand? Anyway, I need a new shrimp source if I'm to try to be local. (But in an effort to be moderate and not completely insane, I bought the shrimp that was part of our menu and didn't give it up....yet.) Another post for another day.

Sunday, April 20, 2008

Faking it pays off!

I was so frustrated when Dr. Isik told me that I shouldn't be tired any more. I thought "What am I doing wrong?!" I certainly wasn't faking my fatigue - it was awful.

So I thought about it, and decided that it was no way to live, and decided to fake it. No more letting life pass my by while I layed around feeling sorry for myself.

Yesterday, I did a project that has been driving me crazy: I organized the attic, reviewing what we have for a yard sale (not as much as I thought - hmmmm). I took Tessa to a birthday party, and while she played princess I looked through Cooking Light and came up with a week's worth of recipes and a meal plan for the week; then we went to Trader Joe's and bought what we needed (the goal, once again, to eat everything from our fridge this week). Last night, Lori came over, and we chatted and stayed up later than I'm used to and watched a movie. Today, after a very leisurely morning (I decided that I couldn't remember the last time I just hung out drinking coffee, so despite some remorse, we stayed home from church; Ryan also did a long bike ride) we did yard work as a family, and I did lots of weeding, a bit of mulching, and some planting (leeks, kale, lettuce, marigolds, cabbage, and strawberries) and Ryan cleaned up the area for the blueberries, further working the soil, pulling up grass in that area, and mulching over the soaker hose (the blueberries are looking well!). I posted the old play structure on Craigslist and got a taker right away, and Ryan and the gentleman are currently taking it apart to fit in the gentleman's truck.

The result? I feel tired, certainly, but better than I have in a long time...better than since my surgery. Our yard has progress for the first time in a while, my body feels tired and sore but from activity (which is much better than feeling tired and sore from inactivity).

And this allows me to think about more than just "oh poor me" which has been my focus far too much lately.

Back to gardening, which is part of caring for the earth, using my body in a physical way that is healthy, teaching Tessa about the connection of food to the earth, and being frugal. (Our neighbors Sarah & Steven gave us soaker hoses, and then Kathleen gave us one, too.....hurrah!)

And posting the play structure on Craigslist has been a goal of mine for some time, and the $100 will help our coffers immensely. Frugal, recycling.....check!

So I'm trying to get back in the swing of things. I'm trying to care for the earth, care for my family, care for our budget, avoid consumerism (including the "let's order pizza because I'm too tired to cook" nights), and soak up the sun. It helps that there WAS sun today, by the way.

Let's hope that the rest of the week is like this, too. I still have the paint and supplies to finish painting the downstairs bathroom....wouldn't that be a good project to finish? And I continue to shop Craigslist to find a new entertainment center and loveseat for downstairs (free would be good for that, by the way).

I'm filled with enthusiasm to get back on board with these things. I want to help out friends, I want to organize playdates, I want to go for long walks with Shep.

Let's hope my body feels okay tomorrow. But today, so far, so good.

Friday, April 18, 2008

Update from the PS

Today I visited Dr. Isik.

He said I'm healing beautifully. He said that my implant is not moving; the bottom of the implant is remaining in place, but there is a seratoma (code name for "excess fluid" which is harmless and will be reabsorbed by my body) at the top of my left (treated) breast which is making it appear misshapen, but is not a long term problem.

I just need to be patient. Oh, how I hate being patient.

I am allowed to swim with Tessa (no more concern about infection). I am allowed to walk, use an elliptical without my arms, or sit on a stationary bike. No jiggling, no jumping, no jogging. No lifting any kind of weights. I am now allowed to lift my arms past my shoulders, and expected to get physical therapy again to regain range of motion (helllllo, Adrienne....).

Three more weeks, and I can jog.

But the fatigue? No answers. I shouldn't be feeling it like I am. I'm wayyyy behind schedule. I should have felt better a week ago.

Sigh.

Finally, it all catches up with me.

Of course, I can't help but wonder "is it mets?" because that would be just par for the course. (Bad attitude. I know. I can't help it. And you'd wonder too, if it was you.) I try to suppress these thoughts, but they rise. Maybe it's all falling apart.

Or maybe I'm just tired. It's all so wearing.

The next surgery is supposed to be about half the healing time of this one, although still six weeks with no exercise or jiggling.

Tonight Tessa is going bowling with Ryan, Anna, and Artie. I will curl up in bed. I look forward to the day when I can stay home because I'm DOING something and not because I can't get out of bed...

Wednesday, April 09, 2008

Every day a bit longer

I am able to make it longer each day. Today I've made it this far - amazing.

A good day.

Except.

One of the girls on the YSC died today.

Another one gone.

Another motherless child (a girl about Tessa's age).

I need the support of women who have been in my shoes, but it's sad and lonely when those women are dying. Of course, more are living than dying, but three deaths in two (?) weeks is enough to make anyone ill.

It's not fair. I don't understand it.

Tuesday, April 08, 2008

One foot in front of the other

Yesterday I made it in mothering-land until about 3:45pm. Today I hope to make it until at least 5, and maybe beyond. Beth has Tessa for a couple of hours this morning (playdate with Anna - the girls love each other), and then it's preschool for Tessa while I go visit my lovely shrink. I'm actually a bit nervous about driving so far - my body is so tired and driving involves shoulder checks and sitting in one position and such but I know I can do it, we'll just see how tired it makes me.

And since when does a 20 minute drive exhaust me? Argh.

I realized a couple of things yesterday:

1) The sensations I've been feeling (nausea, fatigue, headaches, digestive issues, etc) are most similar to chemo. Yuck. There are some memories I don't want to relive.

2) The drugs were too much for me. I actually do not remember anything from the day of surgery - I took an Ativan before going in - until about Friday? Saturday? - which is really scary. I read my own blog and I'm thinking "hmmm I guess I remember that" but it's really, really fuzzy. Wow. I have little snippets of memory, but I can't link the days together. It's frightening. I think I'd rather have the pain than that. Or would I? It's sort of confusing.

I'm taking it slow. One foot in front of the other. Minor house chores (made Tessa's breakfast - our new favorite of oatmeal mixed with berries, non-fat-plain-yogurt, and maple syrup; laundry; unloading dishwasher...I'm not too ambitious), going for a short walk with Shep after this (I think it will be good for both of us), going to the good doc, having another quiet evening at home.

It's only been a week (less!) and I barely remember what it feels like to be normal. My head is so fuzzy from this experience. But each day is better than the one before it so I'm trying to remember that this, too, shall pass.

Thursday, April 03, 2008

Now it's a Clydesdale

Argh.

Just took another little pill. I hope it helps!

Saturday, March 29, 2008

R.I.P. Mama Cathy

My friend from YSC has passed away. She leaves behind a husband, a son, and many people who loved her in "real" life. She also touched the lives of many strangers on YSC, and I am one of them.

Today I feel a small amount of relief that her suffering is over. I was halfway hoping that she was gone - released from pain, releasing her family from the constant vigil with only one possible outcome - when I checked my email.

But the relief is small compared to the other emotions.

I'd like to copy and paste the message that gave Cathy her nickname here. This was posted June 2006, when "the boards" were going through a tough time like the one that is happening right now, with mets diagnoses and deaths, before Cathy was a mets girl, before she knew she would join the ranks of those who passed before her.

Cathy, you will be missed. Deeply.

My prayers go out for Cathy's loved ones, in particular her husband and son.
-----------------
It's happening again.Every once in a while the board goes through a really tough time. Our hearts break for our sisters whose cancers are spreading at frightening rates. We see their selfless, innocent posts that detail the cancer taking over. How they feel, what they're thinking. What they need. The struggle, the powelessness, the strength and courage.I just wanted to pull all you newbies in close and let you know that we've all been there and you are probably absolutely freaking out right now. Chemo has beaten you up, you feel like a shadow of who you used to be. Tired, depressed and overwhlemed. You may even feel guilty because you are not only sad for these beautiful women, but you are sad FOR YOU. You see yourself in every one of these women that becomes so very sick and then loses the battle.It's normal to feel this way and it's OK. We understand and so do they. Your mother may not, your husband may not. your friends may not, but we do.And there's nothing wrong with feeling sad and getting angry. But please remember that the odds are that YOU are going to get better. YOU are going to get your hair back and start to feel well again. YOU are going to get back to the life that you want to lead.So if you are checking the boards incessently right now, reading the latest post, then sobbing and then going back for more.....been there too. You are grieving....this disease is not fair....it's disgusting and ugly and perverse. And it's so much more unfair to certain sisters than others. And there's nothing fair about that.So grieve for them. Grieve for you. And then remember that you will get better.Love,cathy

A Story of Hope

I posted this on the YSC yesterday, and then thought maybe my readers here would appreciate the story.

West Seattle is a small place. If the woman in question reads this post, or if I've inadvertantly identified her in some way (I do wish to respect her privacy), please forgive me or contact me and I'll remove the post if it offends. But I want to offer thanks to that woman for her incredible gifts and wisdom. The women of YSC have all responded with love toward her, and wishes to meet her, to be like her. Lady, you are greatly admired, and you've offered a lot of girls hope. Thank you for that.

In the sea of bad news that has been hitting my cancer community, this is of great comfort to me.

Here's the post.
--------------
For once, I was at the gym today.

I was standing next to my locker, and a woman came in beside me. She had obviously had double mastectomies. Because I often speak without thinking, I said, "I'm a breast cancer survivor. Are you, too?" and she was very open to the conversation and said "Yes" and shared quite a bit of her story.

The short version? Diagnosed at age 40. She's 72 now. She's a 32 year survivor! Hurrah! Paget's disease of the nipple, and her doctors initially gave her 6 months to live. She demanded a mastectomy (which they initially didn't want to do for some reason), refused chemo and radiation, and did naturopathic treatments. (Not what I would do, but it's obviously working for her!)

She had a recurrance a few years later, and repeated treatment on the other side....another mastectomy, again refused chemo or radiation, again did naturopathic treatments.She mentioned that she'd had a hysterectomy due to an unrelated cancer, much later, as well.

She said she never considered reconstruction. She said, "My husband never touched me again after the mastectomy. He was a fool. I've had several intimate sexual relationships since then" (I loved her candor - not what I expected of a woman of her generation!) "and I tell them up front: I want a man, not a boy. If you're here for the boobs, get lost!" and that has worked quite well for her.

She said she often forgot that she had mastectomies, and sometimes forgets her prosthesis, which is only "important" to her when she's going to the office.

(It could have gone the other way. She could have been offended by my questions, and by my obvious noticing of her double mastectomies. But she was not, she was very open. And, just to be fair, I flashed her pretty well, also!)

I admired her more than I could say. I thanked her for the hope she offered me, but I wish I'd thanked her for sharing her love of her own body and her understanding of her own self worth and sexual prowess. There we were, naked in the locker-room, and this woman did not have the body of a Roman goddess, more of a Gaia-mother-goddess. But make no mistake, she was a goddess in form. It shone from her eyes.

I wanted to share with you girls, and as soon as I could post today, that's what I'm doing.

My wish for all of us - to live that long. To feel that comfortable in our bodies. To feel joy in our sexual relationships. To feel confident in our choices. To forget that we had mastectomies (or chemo or whatever). To be confident in the locker rooms, regardless of our size, shape, and breasts (or lack thereof). To share our success with strangers who have the nerve to approach us, so that they can feed from our joy.

I hope this story gives all of us hope. Those with dire predictions as to our survival, those who have recurred, and those who hope to never repeat our experiences. Those who have already found supportive partners....and those of us who WILL find supportive partners.

It gave ME hope, so I'm sharing.

Thursday, March 13, 2008

Cancerland

Tomorrow I'm walking back into Cancerland by choice.

I am meeting with a new plastic surgeon to discuss my options for corrections. By my own standards, my current reconstruction status is a mess, and I hate it.

There. I hate it. I said it. When I look at it, I'm reminded of the events of last October, and the emotional fallout of that experience.

So tomorrow I'm going to consult with another PS to discuss what is and is not correctable. If corrections are possible, I would like to proceed in the spring to get it over with.

I have a lump on my eyelid along the incision and it itches like mad (and has since surgery in October). My right, prophylactic side, has scars that I can't explain and they're jagged and rough. My areola on that side looks like a wound, and it's in pieces. The nipple is non-existant. There's a weird divet in the middle of it all, and some pitting in the skin.

My left side aerola looks more normal/as I expected, but the nipple area is actually lower than the rest of the breast. There's a weird puffiness on one side of the breast. And worst of all, that breast is shaped like half of a canteloupe, and it's significantly bigger than the other breast. (Do NOT chime in here that all women's breasts have some assymetry. I know that. I am not talking about norms here, I'm talking about something beyond that.)

Because I told myself that getting this work done would be a symbol of my ability to move on....I feel like I'm bogged down by the symbol. When I see my breasts, I hate them. I don't want to hate my own body. I don't want to see betrayal, torture, pain, ugliness when I look at my chest. I don't expect beauty, but I don't want to feel so....deformed. Artificial.

I don't know if it's correctable. I don't know what the PS will say. But I'm going to try this again.

And it makes my stomach hurt. It makes me want to cry. I hate surgery. This will be number 9 in three years....averaging once every four months for 3 years. I assume it's "minor" surgery.

But I hate it.

Please pray that I don't have a total meltdown as a result of this experience. I brought out my massive medical binder to show my reports, implant sizes, etc. to the new surgeon, and just the sight of that hot pink blender has my stomach in knots. There are a lot of awful memories in that binder.

I just want to put this - all of it - behind me. And I have work to do before I can do that.

Granny's beans

I made them again. Remembered everything....and this time, it worked.

Delicious. Tessa and I love them, and I can't wait for dinner time.

Struggling today for Mama Cathy. I re-read the post updating about her. It says "days, maybe weeks." Days? No! No no no no no no noooooooooooooooooooooooooooooooooooooooooooooooooooo!

I will never understand this damned disease. It's no wonder I can't get my feet under me half the time, knowing how it lurks, waiting to trip women.

I also sent in my photos (myself during treatment, the 3-Day) for the KOMO4 interview on Monday. Looking at them reminded me of some really, really tough times.

Heartbreak

This morning I logged on to the cancer boards at YSC, and was hit twice.

"Mama Cathy" (so named because of her mothering of "us girls" and her nurturing spirit) is moving to hospice. The doctors believe that her time is not long, maybe weeks.

I'm not able to articulate clearly how sad this makes me feel. Cathy was diagnosed early stage, then diagnosed with mets, and now this.

And another woman, who has posted great drama in her personal life and jokingly calls herself the Lindsay Lohan of the YSC but has a heart of gold and reaches out to every newbie and gives hope and encouragement to many, is awaiting to hear if her elevated liver enzymes etc. are mets. She's experiencing full post traumatic stress disorder and isn't even able to post on the boards right now, but we girls are freaking out on her behalf because if there was good news we think she'd be posting. So much speculation, so much fear.

In my garden, the irises are starting to grow. Melinda, who died last year, loved irises, and everyone who was touched by her planted irises in her memory.

These are some of my favorite cancer girls. Please pray for them. And please pray that I will find peace somewhere in all this, remembering that they are not me, and that their fate may not be my own.

Wednesday, March 12, 2008

Watch Me Model

I have been asked to be a survivor model for the NW Hope and Healing Fashion Show, "Style '08." This is your invitation to come and watch me possibly trip down the catwalk, modeling boutique fashions from Seattle area boutiques, including my favorite, Carmilia's. It's for a great cause, and you can learn more at http://www.nwhopeandhealing.org/ , and you can buy tickets at that website, as well.

Thursday, March 06, 2008

Oh well

Tonight I cancelled attending bookclub. I feel lousy and I am really looking forward to hosting the Surfaces (12 of us) for dinner tomorrow night, so I'm going to go to bed early. Bummer.

Today I turned down our hot water tank a bit; it was uncomfortably hot coming out of the tap (bad with little kids) and an energy waster. This week I plan to get a hot water blanket, which apparently can save 3-10% of the energy used by the hot water heater. (Better get an earthquake strap while I'm at it, and install them at the same time.

I've "hidden" our paper napkins, and now we're using cloth almost exclusively. I had plenty already so I didn't need to buy them. They get reused, not tossed in the trash, and it's one less thing to buy. Environment=pocketbook in this case. (Not always the case, but often enough.)

Church this weekend plans to do "Stone Soup," the classic folk tale, for the children's story, and all members of the congregation are asked to bring in a vegetable to share. This fits perfectly with the values we're trying to teach Tessa, and I'm glad she will get to see how it works. I think she'll also get a kick out of the social hour, enjoying the soup with her friends. We've volunteered to bring some bread to share (just a couple of loaves) and help serve (Tessa's preschool "spirit play" class is in charge of the project, so those families are bringing extras and helping) so we feel particularly connected to the project. Every week, I feel more connected to the WSUU community and their values.

I have also taken on a writing project for WSUUs involvement in building a Habitat for Humanity house in West Seattle. I think that this is an excellent opportunity for family time and community and charity and all the rest, so it will be a family affair to work on the project. I envision Tessa and I cleaning up the construction site (she can pick up nails for recycling, for example); I envision Tessa running a free lemonade stand for the workers; I envision Ryan getting satisfaction from swinging a hammer; I envision writing well crafted essays on the project and publishing them on a blog (not this one) for the WSUU and UU and Habitat communities.

Whereas I'm not able to do much for Komen right now because the breast cancer thing is sometimes too large of a part of my life, Habitat should fulfill my need to participate in charity wihtout bogging me down. That's the hope, anyway.

I have managed to track every dollar (cent!) of our household spending since this project began. This is NOT my forte' so I'm proud of this accomplishment.

I'm planning a family yard sale. NOT the 3-Day massive yard sale, just a litlte family yard sale. In this way I think we'll bring in some extra cash, get rid of clutter. We all stand to benefit. We'll let Tessa do a lemonade stand for profit, and then help her to budget her profits (charity, savings, spending).

I've been asked by Snow & Genentech to go to Colorado in May. Hurrah! I like these trips, and the money will help our family.

Today I had planned to garden, garden, garden....I'd like my front beds to look nicer when Mom & Dad S. arrive. Alas, it's not to be. We still have a mountain of mulch in the back yard, but I can't spread it until I pull the weeds. It will happen. (I'm working on this as Ryan works on the digging of the vegetable garden. In theory, they'll finish up at the same time, adn then I'll switch from the "big" weeding project to just maintenance weeding adn then planting as well. At that point, we also need to aerate, thatch, fertilize, and re-seed our back yard, figuring out a way to do this without Shep un-doing our work. I really want to spend a lot of time in our back yard this summer, enjoying the fruits of our labor. Actually, in our front yard, too!)

Speaking of yards, I'll throw this out there in internet land: anybody have any of the following they'd like to get rid of? I'd be happy to take them off your hands:
- soaker hose(s)
- rain barrel(s)
- ceramic or concrete bird bath
- wooden, metal, or concrete (anything but plastic) garden bench(es)
- trellises (for putting up beans and raspberries)

It worked for the bread machine (thanks Mom & Dad) so maybe it will work for one or more of these items, too.....?

Speaking of the bread machine, I haven't bought a loaf of bread since I got the machine. And now I only want home made bread. ;-) Tessa says she likes store bought pizza and store bought bread better than home made......oh well. C'est la vie. She's five, she doesn't get to choose.