Tuesday, December 29, 2009

One Week Till Surgery

So, I don't think I'm going to publish that long, anti-chemo post that I wrote... because that should at least wait. It is not time for me to even be thinking about chemo yet. I should instead be focusing on the lumpectomy surgery, which happens one week from today!

I'm doing well preparing for it, both emotionally and practically, and I'm proud of myself for that. I'm not feeling very scared. I trust my medical team, and I have wonderfully supportive family and friends, and I'm also doing a good job taking care of myself... and I just have a strong gut feeling that everything is going to be okay, if I just breathe and trust.

This is what I'm doing/have done to prepare:

- I cleaned my whole room, and it looks beautiful! Now if I need to spend lots of time in here during recovery, it is actually a lovely space I'm excited to be in, instead of looking like the aftermath of a tornado. I even set up a meditation corner.
- I am gathering books and DVDs, ones that are either new or exciting enough to me that waiting until after surgery to read/watch them is making me impatient and annoyed - which is a good thing!
- I used Christmas money to stock up on necessities, like cat food, cat litter, cleaning supplies, kitchen stuff, shampoo, etc... boring things, but it will help.
- I pre-paid a bunch of bills due throughout January
- I bought a bunch of paper plates, which I am a little embarrassed about because I care about the Earth, but they are made from recycled paper and I certainly do not use disposable kitchen stuff REGULARLY... it just will help SO much to not have to worry about dishes when one of my arms isn't functioning properly. (We don't have a dishwasher!)
- I put all of my "post-surgery clothes" on a low shelf, so they are all together and easily accessible. Big flannel PJs, button-down shirts, shirts loose enough to step into if I can't get them over my head, velour and other soft stuff, etc.
- I bought one of those "old lady" pill boxes that organizes all of your meds for you (in my case, supplements and vitamins)

There is still more to do, but that's a great start! My hope, of course, is that surgery will go very smoothly and my body will be so strong and healthy that recovery will be a breeze... maybe I will feel great after just a couple days and we'll all be happily surprised to discover that all of this prep work I've done was unnecessary. BUT, just in case I AM housebound and weak, it will be great to be able to just stay in bed and not have to worry about whether I paid the electric bill or how I'm going to lug 20 lbs. of cat litter home from the store.

Also, right now I am rather obsessed with getting in as much yoga/circus/physical activity as I possibly can, to make up for the weeks (?) when I won't be able to do any of that. I've done a lot of yoga and circus this week already and have more coming up soon... it makes me happy and feels so good.

Big thank yous and lots of love to my family and friends who have helped me with all of these things...by helping me financially, loaning me shirts, getting my vitamins, making circus & yoga possible for me, and just being so kind to me!

Monday, December 28, 2009

No Chemo

I just published a long, anti-chemo post, then un-published it. I'm going to sleep on it and see if I still want to publish it in the morning.

The gist of it is, I'm feeling strongly anti-chemo. I'm thinking that as long as there is no lymph node involvement (which no one THINKS there is, but we won't know till after surgery), then I am going to say NO WAY to chemo, regardless of whether my doctor(s) or the Oncotype DX test recommend it. I can't bring myself to allow doctors to pump my veins full of poison, just as an attempt to prevent a recurrence of cancer, which may or may not ever happen. Right now the idea of voluntarily putting dangerous toxins into my body seems worse to me than taking the risk of having a recurrence.

Thoughts??

Thursday, December 24, 2009

Happy Holidays!



Happy Holidays to all of you, dear friends and family! Wishing you love & light! Thank you for your support. I am so grateful for you. I hope your holidays are wonderful!

Saturday, December 19, 2009

Cancer is Not A Blessing

So, I haven't written about the thoughts in my head lately, although I sure have been thinking a lot.

Some women choose to keep their BC diagnosis rather private. I, obviously, did not. I'm quite open about it, partly because it would be difficult for me to hide something so big that's going on in my life, and partly because people's love and support is what's helping me get through this.

However, being so open about it isn't always so great. I got my first negative reaction from someone the other day... when I was downtown, I ran into an acquaintance I hadn't seen in a while. She talked for several minutes about what's new in her life, and I listened quite attentively. Then she asked what's new with me, and I told her I was diagnosed with BC last month. She babbled a few questions without really giving me time to answer, then babbled something about how she hasn't checked her own breasts in a long time, then said "WELL I'VE GOT TO RUN!" and quickly scurried away. And then I just stood there looking at the now-empty spot where she had been standing, and felt my face turn red. It was the first time someone had freaked out and bolted, and I was left feeling like Typhoid Mary.

What has also been difficult is hearing people say, in a nutshell, that BC is either self-caused, and/or should be self-healed. Most of my friends and the people I know are artists and healers, into alternative spirituality, holistic health care, etc... I am, too! But I have heard many variations of the following and just can't take it anymore:

- Don't listen to the doctors. Use this as an opportunity to upgrade your thought patterns.
- Lots of cancers just disappear on their own, you know.
- Maybe you don't really have cancer.
- Cancer is usually caused by anger.
- Cancer is a result of inflammation, and sugar is inflammatory, and didn't you eat a lot of sugar as a child?
- I know someone who had BC and she really thought of it as a gift! She just watched lots of funny movies all the time and laughed her way through it!
- Radiation pokes holes in your aura. Don't do it!

And then there are women's own stories of how they were diagnosed with BC but chose not to have surgery/radiation/chemo and instead looked within to figure out what memories or feelings they were repressing that caused the cancer, and then healed those memories and feelings and thus rid themselves of cancer, or changed their diet or lifestyle or whatever, etc., etc. Sometimes I get these lengthy, unsolicited stories when I am just trying to get from one aisle of the Co op to the next.

I don't want to belittle any woman's journey or story, and if a woman feels that what she is doing works for her, then I am glad for her and wish for her continued health and happiness. But I get angry by the message, sometimes implied and sometimes said outright, that if a person is unable to heal herself from cancer, it is because she is somehow spiritually or psychologically inferior, or not enlightened enough. The implication is that if someone (say, ME) "resorts" to Western medical care, it is because I don't have enough love/trust for myself and my body's self-healing abilities. THAT'S BULLSHIT.

I DID NOT want, ask for, or cause this cancer. I WILL NOT take personal responsibility for its presence in my body. I know that no one is perfect, and we ALL have things in our lives that we could improve upon, but I am the freakin' poster child for the "anti-cancer lifestyle" -

I'm 30 years old.
I have no family history of breast cancer.
I have never had an alcoholic drink in my life.
I have never smoked a single cigarette.
I have never done drugs.
For the first 29 years of my life, I drank no coffee.
For the past 9 years, I have been eating a vegetarian, largely organic diet.
I exercise regularly, yoga and trapeze and walking. My body is strong.
I am a healthy weight.
I use natural bodycare products.
I have a fulfilling spiritual practice.
I have always had a healthy body image/love my body.
I get plenty of rest - usually 8 hours of sleep per night or more.
I don't wear underwire bras, and haven't worn any bra in years.
I have the highest levels of antioxidants out of the several hundred people who have been tested with the biophotonic laser scanner in my dad's chiropractic office.
I have wonderful friends and family, fulfilling relationships that make me happy.
I laugh a lot and enjoy life; I am silly and I play.
I am so healthy that until the biopsy, I had not had a needle in me in about 16 years, other than for dental work.
I can't even remember the last time I threw up, and I've never broken a bone, or been unconscious, or needed a cast or crutches, or had surgery, or had stitches, other than a few on my nose when I was one and fell while learning how to walk.
I say prayers of gratitude at least 80% of my nights for my life, my health, and the love that surrounds me.
I am a good friend to myself and others.
I have been journaling extensively since I was 10 years old, which is a great stress-relief outlet and a way for me to really know myself.
I am an optimist, and think positive thoughts, and use visualization and affirmations.
I take really good care of myself.

No, I am not perfect! Of course I have problems, weaknesses, issues, and ways in which I need to learn and grow - every human on the planet does! But overall, I am super healthy and happy and thriving, and I WAS STILL DIAGNOSED WITH CANCER. IT CAN, AND DOES, HAPPEN TO ANYONE. IT'S NOT MY FAULT. BEING DIAGNOSED WITH CANCER IS NO ONE'S FAULT!

Some health-nut, well-adjusted women still get cancer. Some women who eat horrible food and party it up with drugs and alcohol all the time and never exercise and have had a lifetime of emotional trauma NEVER get cancer. So I don't understand why so many people go on and on about how "it's in the mind," or it's related to the way a person lives, and all of that blame-the-victim stuff, because it's not like that. Why not instead take things like THE ENVIRONMENT into account? Can we look at that, please?? The Earth is so polluted. The water, soil, and air are so full of chemicals and toxins. For DECADES, humans have been doing horrible things to the Earth, to the point where the question isn't why do I have cancer, it's why don't we ALL? And what about the fact that I spent the first 23 years of my life on Cape Cod, where the rate of BC is 20% higher than it is in the rest of the state? (No, no one knows why - Boston researchers are studying it). Clearly that has something to do with THE ENVIRONMENT, not Cape Cod women having defective thought patterns or something.

I am having surgery in less than 3 weeks, and then I will be having 6 weeks of radiation to make sure the cancer is good and gone. I will ALSO be continuing to eat well, rest, laugh and play, take vitamins, work with holistic health practitioners, take supplements, drink nourishing herbs, think positive, do yoga, send healing energy into my body, and all of that... because I do believe it is important and that these things work. I trust myself and my body's ability to heal AND I trust my doctors. I don't believe that Western medicine is all that's right and everything else is New Age quackery. I don't believe that the power of love alone heals all and only weak people poison their bodies with Western medicine. I believe that both Western medicine AND alternative treatments will help me, TOGETHER.

Wednesday, December 16, 2009

Button-down shirts?

Hi friends.
I've been told (by the other BC survivors) that for a few weeks after my surgery, it will most likely hurt to raise my arms all the way above my head and I will be more comfortable wearing clothes that do not require that - e.g. shirts that button/snap/zip up the front. I think I only own about 3 button-down shirts, because I don't usually like them. Therefore, I would love to be able to borrow some button-down/front-closure shirts for the month of January! Does anyone have one/some that I could borrow?? My surgery is Jan. 5. My shirt size is 6 or Sm/Med, but it would be fine if the shirts were even bigger than that. Also, I'm in need of any pajamas that don't need to go over my head, such as nightgowns I could step into, one-piece suits, or button-front pajama tops! If you have any of those to loan, I would so appreciate it!

Leave me a comment here and I will email you with my address or we can make arrangements to meet, if you are close by.

THANK YOU SO MUCH!!

Monday, December 14, 2009

:(

This is the 3rd evening in a row that I have felt nauseous. Thanks to my visit with the naturopath*, I'm now taking 27 supplements/vitamins per day.

4 Juice Plus capsules
1 Multivitamin
4 mushroom capsules
6 Green Tea extract capsules
10 Melatonin tablets (Yes, TEN...I think I got the wrong bottle)
4 drops of Vitamin D
3 Digestive Enzyme capsules

Hard to say which is making me nauseated, since I started taking them all at once. I'm hoping it stops once my body adjusts. I'm still trying to figure out a system for taking them all. JP have to be taken morning and night, mushrooms have to be on an empty stomach, multi needs to be on a full stomach, digestive enzymes have to be taken right before each meal, and melatonin has to be taken an hour before bed. I guess when to take the green tea and vitamin D is up to me. The amount of water I need to drink in order to swallow 10 melatonin tablets means that I end up waking up at like 2 am to go pee... sigh. Must look into getting higher dosage tablets to avoid this.

I bought a white board "Chore Chart" that has a weekly grid with spaces to write "chores" and magnetic stars to place in the boxes when you've completed the chores. Instead, I wrote the name and dosage of each supplement, and pile on the little stars when I swallow each...

*She is great, btw. My favorite quotes: "I think you should listen to your body if it's craving something!" & "I'm not going to micromanage your coffee intake!"

I don't like this

Here's an article about research done on mucinous BC, the kind I was dx'd with -

New Study Questions True Favorability of Rare Breast Cancer Type

In a nutshell, it says that we all assume mucinous BC isn't so bad, but WE MAY BE WRONG. Dammit.

Sunday, December 13, 2009

On hiatus

Hi everyone,
Sorry I have not updated for several days! On Tuesday, I either broke my pinky finger, or sprained it, or SOMETHING. It is bruised purple-y gray and swollen and painful, and it is slowly getting better but in the meantime, I have not been typing much, other htan the typing I have to do for work. Typing with only 9 fingers is annoying.

It's really bizarre to me that there is CANCER in my body that I can't even feel, whereas something as tiny as a bruised pinky tip disrupts my life in a much bigger way. WEIRD!!

I;ll be back when my pinky's better!

Tuesday, December 8, 2009

Hmph

So, the cancerous lump is in my left breast. When I was at DH last week, I had my right breast mammogramed. I just received the results in the mail:

"It is normal, there is no evidence of cancer on your mammogram."

So, health is defined as the absence of a negative? Hmph. I wanna re-write it:

"Dearest Britta!
Your right breast is so healthy and normal and beautiful, like the breasts of women all over the world! How wonderful! Go eat some chocolate and celebrate your awesome breast!"

There, that's better.

Monday, December 7, 2009

Pink Glove Dance


http://www.youtube.com/watch?v=OEdVfyt-mLw (Is that link working??)

I LOOOOVE this video. You may have already seen it, considering it has almost 4 million hits on YouTube! It's a music video that the employees of St. Vincent's hospital did in honor of the fight against BC - everyone dancing in pink gloves! It's so upbeat and uplifting and FUN, but at the same time, it makes me cry every time I watch it. I don't know why! I think it's because it's so touching to see what's probably like a hundred people, all taking time out of their day to do this, putting so much energy and effort into it... EVERYONE is there dancing in their pink gloves, from surgeons to nurses to cafeteria workers to a bald cancer survivor to the old man janitor, and I love that. I love their smiles and laughter. And even though the song ("Down," by Jay Sean) seems like an odd choice to me, the lyrics "Baby, don't worry; you are my only; you won't be lonely; even if the sky is falling down" buoy me. I DO feel everyone on my side. I can totally picture my surgeon and medical team dancing in pink gloves with the rest of them!! My surgeon, especially, is so awesome. I am scared of surgery but I feel so safe in her hands. I know she won't let the sky fall down on me.

Forgive me!

Hi everyone!
Thank you all for the wonderful emails and voicemails and FB messages. I love hearing from you and I appreciate you all. I'm sorry I am not always able to respond to each message individually! I wish I could! And if I don't respond, or if it takes me a long time to respond, I promise that it is not personal, and it's not because you said or did anything wrong. It is because I am overwhelmingly busy at times, with things like:

- scheduling appointments
- emailing/calling my surgeon, nurse, hospital social worker, etc, to ask questions, get more details on my path report, update them on which vitamins i'm taking, etc
- talking with other breast cancer survivors
- talking with my insurance company, and regularly updating my income information so that my insurance continues
- talking with my various employers, to make changes to my schedule as necessary (due to upcoming surgery)
- doing the lengthy intake paperwork for Sojourns
- sleeping extra, so that i stay as healthy as possible before surgery
- thoroughly cleaning my room and the house, to prepare for the weeks after surgery when i won't be able to do so
- trying to find an inexpensive front-closure sports bra to wear after surgery, because i've been told i'll need it
- trying to get my xmas shopping, etc. done
- reading the STACKS AND STACKS of info all of the various doctors/hospital employees have given me - articles, pamphlets, copies of my tests, newsletters from BC survivor groups, financial aid info, and on and on
- researching BC even more, by reading books and websites and talking with other survivors, to make informed decisions about my treatment
- trying to get organized, by making a phone/email list of all of my different health care providers, getting a folder to put all of my medical records into, writing to-do lists and lists of questions i need to ask and who to direct these questions to, etc
- working as much as possible to make more money NOW in preparation for the weeks when i'll be unable to work
- Googling "foods high in potassium" and then grocery shopping for those foods, because my bloodwork showed that i'm low in potassium

It's a lot to be dealing with. So if I don't call you back or email you back, it doesn't mean I don't like you! I SWEAR! :)

EDITED TO ADD:
Some of you have tried to leave comments on my blog and it hasn't worked. Blogger does seem to make it more complicated than it needs to be! It will ask you which "identity" you want to post with. If you are already logged into something like Google, go with that. But it may be easiest to just post as "anonymous" - but please sign your name so I know who you are! :) ALSO - when you first click the submit button, it will give you a PREVIEW of your comment, and won't actually post it until you AGAIN click "publish comment." Hope that helps!

Saturday, December 5, 2009

Rough Night

I had a good day, but now I'm having a bit of a rough night, and I'm not quite sure why. My head and neck are very achey, the way it has felt on those 2 or 3 occasions when I've fallen off the trapeze, only this time I didn't. I wasn't even ON a trapeze. I can't think of anything that happened to my head/neck to make me feel this way!

Or maybe it's the snow that's getting me down. First snow of the year, and most people I know are giddy because of it. Most people I know don't start to hate snow until it's March or April and there's just too much of it and it's gray and slushy and everyone's impatient for spring. But I hate every stupid flake of it from day one!

Thursday, December 3, 2009

[New Hospital] Visit

I'm exhausted and this will be short. My mom and I got up at 5:30 am to drive to the hospital, and didn't get home till about 2:45 pm, so it's already been a 9-hour day and I have to go to work in half an hour. Aaahhh!

SURGERY DATE: JANUARY 5

Today I got a chest X-Ray, bloodwork, a brief physical, mammo twice, and an ultrasound. I met with a nurse, social worker, and surgeon. I am tired and on information overload!!

Brief synopsis -
X-Ray - super quick and easy, and everything looks normal/healthy.
Bloodwork - also super quick and easy, and surprisingly did not hurt. I have great veins! Everything came back normal, except I'm a little low on potassium. Okay, so more bananas.
Meeting with nurse and social worker - They're both very nice and helpful and had good info about financial resources, health insurance, etc. They weighed me down with articles, books, pamphlets, etc. that I still have not had the energy to wade through.
Meeting with surgeon - The pathologists here confirmed the diagnosis of early-stage mucinous carcinoma. However, they say the tumor is 1.06 cm, which is larger than the 8x7mm figure I'd been told by the previous doctor. There's also a tiny bit of microcalcifications near the tumor, which are likely benign but may be cancerous. They, too, will be removed during the lumpectomy and what this means is that the amount of tissue my surgeon will need to remove is a bit larger than expected. My breast may end up looking weird, I don't know. But as I told her, I mostly don't care; I prioritize health over aesthetics. My surgeon is great, and I feel very comfortable with her. She had me laughing a lot! UNTIL SHE SAID THE "CHEMO" WORD. She wanted to prepare me for the possibility of it. She felt bad that I visibly deflated when she said that word... because yeah, I hadn't been thinking of chemo at ALL. I was naively assuming that since the cancer in me is so tiny and so early-stage, and the mucinous/non-life-threatening type, that there's no way I'd need chemo, and maybe I wouldn't even need radiation! Well. Radiation's pretty much obligatory, and chemo's a possibility. We won't know until after the lumpectomy and sentinel node biopsy. That's when the doctors will know more details about my cancer, stuff that I'm too tired to write about write now, but basically there are just a bunch of factors to consider and I'll have to have meetings with oncology people to talk about whether or not they recommend chemo.
Mammo and ultrasound - the surgeon wanted me to get a mammo of my right breast, just to check it out, since I'd only had a mammo of my left breast previously. This took a long time because I hadn't had it scheduled in advance and thus they had to squeeze me in (no pun intended :P ) between other patients. Then they had to do the mammo AGAIN because the results weren't clear enough the first try. Then we sat in the waiting room for a looooong time and then they called me in for an ultrasound. I started freaking out a bit, thinking it was because they had found something... but no. They just wanted to be super duper thorough, and young, dense breasts often don't do well with mammograms. And the ultrasound went well - I am ALL CLEAR on the right breast! Everything is fine and normal! That's what the MRI said, too.

Okay, more later. TOO TIRED.

Wednesday, December 2, 2009

Life is a miracle

My consultation at the hospital is tomorrow morning, and the doctors and I will figure out a plan for how to get this cancer out of me. I'm a little nervous, but I know it will be okay. Know why?

This is me when I was 24 hours old:



This is me now:



I started life as a 4 lb. preemie in an incubator, and now I fly. Life is a miracle, and my body is so good at growing and being amazing.

Tuesday, December 1, 2009

Cape Trip

I was down on the Cape yesterday and today, enjoying some time with my family and getting some dental work done.

The novacaine lasted for FIVE HOURS. I spent the afternoon at my parents' house, waiting for the swelling and numbness to go away so that I could eat lunch then drive the 3.5 hours home, and the wait was hard. Opening my mouth hurt, but even closing it all the way hurt, so I ended up looking like a slack-jawed idiot for hours. I felt like such a slug, sitting in front of the TV with my fat, numb face... when normally at that time on a Tuesday, I would have been in yoga class! I sure did miss it today!!

Finally I gave up waiting for the novacaine to wear off, and packed some Chinese food leftovers to bring with me in the car, figuring I could just pull over somewhere to eat once I actually regained feeling in/control of the right side of my face. First I stopped by the beach before it got dark, to hang out with the full moon... and the beach was as soul-nourishing as always. You can see I'm much happier at the beach, even though my mouth is still a little weird!



Monday, November 30, 2009

Speaking of Sleep...

Does anyone have any tips on how to train myself to sleep on my back, when I'm naturally a stomach-sleeper? I've been talking with other women who have had lumpectomies, and as I feared, I'm going to have to sleep on my back for a while during recovery. I've never been able to do this unless I take a sleeping pill, which is not a good long-term option. Even if I start out by lying on my back and getting myself super relaxed and even if I'm exhausted, there's always that final moment before dozing off when I automatically roll over onto my stomach.

HELP! I'm thinking maybe I should start practicing back-sleeping now, BEFORE surgery, so that I'll be used to it by the time I really need it.

Sunday, November 29, 2009

ZZZzzz

Hi friends 'n fam!
Here is just one example of how you/your love & support help me EVERY DAY!

For years, I have been sleeping with a bed full of STUFF - books that touch my heart, various crystals and rocks, stuffed animals, photos & cards & letters & etc. under my pillow...
This is what my bed currently looks like (I hope these photos are working!):



The whole bed is from Ana; the cozy sheets are from Tina, Alaia, and Maialen; the frog reminds me of Tammie; the (now broken!) sparkle ring is from Bronwyn; the Lapis Lazuli blue stone (that blends in with the sheets, oops) is from Leah; the Miss Piggy pillow case reminds me of private jokes with Grace ("Tough guy, tough guy!!"); the pink, lavendar-filled eye pillow is from Deena; the poster above my bed is full of wonderful messages from Supriya, Sage, Zoe, Marta'elena, Shawna, Erica, and Anneka; and not in the frame is the Haudenosaunee Thanksgiving Address booklet (from the Gathering in Gratitude play I did with Luz Elena, Heather, Lisa, Radha, Jahnavi, Stephanie, Amy, and lots of people!), and it's not in the frame because it fell in that space between the wall and the bed. Also lost somewhere in that space are my MichFest bracelets, to remind me of times with my fest sisters.

The books: Wise Child, my favorite book in the world; the Tao te Ching (that is, one of the 100+ translations); Audre Lorde's The Cancer Journals (not only relevant, but also a reminder of my happy days with Corinn and my Women's Studies friends); and The Lesbian Tent Revival Sermons by Carolyn Gage, one of the best parts of Michfest for me.

And of course there's my obnoxious-but-loving cat, Maru, and I sleep in pajamas that used to be my sister's.

And here's what's currently under my pillow:



Printouts of lots and lots of supportive, inspiring, loving emails and FB messages from ALL OF YOU! So I can read your words when I'm feeling down, and soak it all in all night! Oh, and a photo I printed that makes me laugh every time I look at it, for it captured an amazingly sillycrazyhyper moment with Those Who Shall Remain Nameless. YOU KNOW WHO YOU ARE! ;)

Thank you, friends and family!!

I'm supposed to be cleaning my room and writing meeting minutes right now, but clearly I'm not

[EDITED DEC. 31, 2011: OHMYGOD, could someone please tell me what is so remarkable about this particular post that makes it my most-viewed post by a landslide??? My "stats" page tells me that this post has been viewed 477 times! In comparison, my second-most-viewed post has only been viewed 256 times. Why THIS post? Someone? Anyone? Talk to me! I'm so confused!]

In probably a couple of weeks, my breast is going to be cut open. Oddly enough, I have not spent much time thinking about what surgery (and recovery from surgery) will be like. What I HAVE been thinking about is how bizarre it is that strangers are going to see the inside of my body. Some surgeon/surgery team is going to be seeing the INSIDE of my breast, and be the first (and hopefully only?!) people to ever see that. I've never seen the inside of my body! No one has! I went to look at those mastectomy pictures, so I now know what the inside of a breast looks like. Wow, so not pretty.

It has made me fascinated with the insides of humans in general. I found an Eyewitness book at a friend's house that was all about the human body, and I found myself totally staring at the photos of cells and skulls and muscles and innards. Brains and blood and guts. We all have all of that. Most of us have never seen it and never will.... so strange to think about the fact that I have all this stuff inside of me that has been with me for the entire 30 years and 10 months of my life, but I've never seen it or felt it and probably won't ever. I can put my hand on my chest and be mere centimeters (inches? How far under the skin are we talking?) from my lungs, my ribs, my heart, but never REALLY touch or see them.... what do MY lungs and heart look like? Like the generic heart and lung photos I saw, or a little bit different, and in what ways? What does this cancerous tumor look like? How fucking miraculous is it that my heart has been beating constantly, and so well, for 30 years and 10 months? How many times has my heart beat by now - trillions? I am so not going to do math, because math sucks. But wow, I am so grateful for my beating heart. And I was looking at the photos of eyeballs - they look so ugly and scary when they are detached from the eye sockets of your skull. But everyone's eyeballs are like that. Mine, too. And you know, I wasn't kidding when I said that I was grateful for my healthy, able body and do not take it for granted - I literally say thank you prayers about 80% of my nights (sometimes I am so tired I zonk out before I get a chance), and I always say thank you for my healthy body, and sometimes I lie there thinking things like, wow, eyeballs are SO TINY and fragile, in the grand scheme of things, and it wouldn't take much to disable an eye, and I am so blessed to have two wonderfully-working eyeballs. I can't imagine not having healthy, working eyes. It would be like the whole world disappearing. Thank you, whoever it is that I am praying to, for my lovely EYES!! I love them so!

The insides of my body are so close, and yet as mysterious and unreachable as outerspace. What's it like in there? Strange that I have cancer in my body and wasn't aware of it, can't feel it, don't feel any symptoms from it. Makes me wonder what else could be in my body that I don't know about, and no one knows about? What if there are other bits of cancer somewhere else, in places it would never occur to me to check? Or weird-but-benign growths? Who knows! In a few weeks, doctors will be REMOVING a CHUNK of my BODY. Hopefully a small chunk, but like I said, my preference is to have them remove a large enough chunk of my breast to be sure to get clear margins the first time, instead of being conservative in an attempt to keep my breast looking nice. Health before aesthetics, totally! But how MUCH of my breast is going away... and where does it go? I never really thought about it, but, EW, what do hospitals do with all of the blood and guts and tissue and tumors that they take out of people's bodies?? How does it get disposed of? Is there some big place full of human hazardous waste where a chunk of my boob will be in a pile with some other person's spleen, another person's amputated foot, blah blah? OMG, so gross and weird. I have never lost anything from my body except for the usual fluids we all lose, and teeth and hair and the usual. I have never actually had my body cut open so a part of it could be removed... I will still be just as much ME as ever with an inch or two (or three, or ??) of my breast gone. I'd still be me with an entire breast gone. I'd still be me with BOTH breasts gone, and I'd still be me with my reproductive organs gone or an arm or a leg gone or with new breasts or all of my hair gone or with scars all over me or with a new set of teeth or a missing lung or kidney!! Not that any of that is going to happen, I'm just saying! I'd be me no matter what. I have a healthy, able body now, but as disability activists remind, every able-bodied human is only temporarily able-bodied. (They use the acronym TAB!) We all have bodies that will be come dis-abled at some point, for some length of time, to some degree. Some people's bodies will lose only little bits of ability for a little bit of time due to minor injuries or illness. Other people's bodies will become permanently and severely disabled due to sudden huge accidents or injuries. Other people's bodies will be healthy, strong, and able right up until very old age when the body just wears out and stops. But all of our bodies WILL lose their abilities SOMETIME. All we can do is be grateful for what we have today. I'd still be me no matter what my body was like, because my body is not me. The outside of my body makes me look like a "me" different from "you," but on the inside, there's not much difference between me and you. That full-page photo of that skull I was staring at for such a long time... my skull is like that underneath my skin and tissue and hair and scalp... yours, too. Same color and material and basic shape and texture of mine. My insides are not really "me." If I were in a coma, I'd still be me, wouldn't I? But... if I were just breathing and had a beating heart, but couldn't see/hear/feel/taste/smell/think/communicate? WOULD I be me? What IS "me"? The chunk of tissue that is removed from my breast is "mine" now, while it is inside of my body... but the moment it comes out of my body and goes onto some metal tray (?? and into some hazardous waste disposal thing??) [Edited in 2011 to say: I have no idea why, but this entry is the second-most-viewed entry in my entire blog! And I'm now embarrassed by how ignorant and naive I was about all of this stuff!!!] , it's no longer mine/a part of me, it's just... tissue. From a body. And it goes away...and gets mixed up with the rest of the Earth somewhere... as the Tao says, "Merge with dust."

Me being not-me:

Friday, November 27, 2009

GRRRRRR

I knew it would be a roller coaster...
For several days, I was feeling GREAT - I had calmed down and adjusted to the diagnosis, and had returned to my usual daily routines, was having a wonderful time with friends and family, feeling so positive and optimistic about everything, etc.

And now, I am feeling so much anxiety and stress I resorted to taking a half dose of Benadryl in hopes that it will knock me out for the night quickly. :( I am here waiting for it to kick in. I have not taken a sleep aid since the biopsy, and I was proud of myself for getting through all of these nights with alternate methods - breathing exercises, prayers, Tao te Ching, reading, etc. - but tonight, dammit, I am just so overtired but now so stressed because I just got a huge bill in the mail from Dartmouth Hitchcock - AND I HAVEN'T EVEN BEEN THERE YET, DAMMIT. The charges are for, I think, having my tissue samples from the biopsy re-tested by DH's pathologists. And the bill is so large because they did not yet have my insurance information, I don't think. So probably Monday morning I can call DH and give them that info and get everything straightened out. And my mom sent me a helpful, reassuring email about all the possible solutions and assurance that it will all work out, and logically I know it will, but at the moment I just can't help stressing out over this huge bill that I have to stare at all weekend until I can make those calls. And I took the half dose of Benadryl because otherwise I would be lying awake in the dark with those huge numbers going through my head. :(

Other BC survivors have told me that these first few weeks after diagnosis are, in some ways, the worst - because everything's confusing and there's so much information being fired at you, and so much you have to learn and research, so many phone calls and so much paperwork, and so many plans to be made... but it gets easier once you get organized and have a plan in place. And yeah, that's what I'm feeling now - overwhelmed by everything. Many of you know about my lifelong fear & loathing of the telephone. That's making things extra hard for me. Calling strangers, especially strangers at institutions like hospitals and insurance companies, is something I have always been horrible at and have hated. But now I have to get used to it.

To-do list, mostly for my own reference because I'm so disorganized and don't yet have the 3-ring binder that other BC survivors keep recommending:

* make a list of questions to ask the BC team at the DH hospital when I go for my consultation next week.
* finish the Sojourns intake paperwork.
* call DH and give them my insurance info.
* call Dr. R's office again and ask again for a copy of my pathology report, because I asked over a week ago for them to mail it to me and I haven't received it yet.
* call SOMEONE to find out the results of my MRI, because it was a whole 8 days ago and I'm irritated that no one has gotten in touch with me yet about that - but I don't know WHO has the results, the hospital it was done at, or Dr. R.'s office, or DH.
* go somewhere to print out a few pictures of me on the trapeze, to bring with me to my DH appointment (i.e. "I don't care what my breast looks like after all of this, as long as I can be BACK ON THE BAR")

I'll write about happier things later. I do have happy things to say. But at the moment, I am just feeling pissed off about the whole BC thing. This stupid 8 millimeter blob that has so rudely been growing inside me uninvited, and will be appallingly expensive to remove.

Tuesday, November 24, 2009

HAAAA!

Today rocked! In chronological order:

1. Yummy 50-cent coffee while doing member hours at the Co op, and saw both E & A-with-baby-A while I was there
2. Awesome 2-hour yoga class (thanks, B!)
3. Surprise sidewalk visit with A, K, and Baby B, and Fraggle Rock DVDs
4. Got a new version of the Tao te Ching in the mail
5. Yummy grilled cheese sandwich for lunch
6. Set up a job interview for next week
7. Ran into A on the sidewalk for a quick chat 'n hug
8. Had a mocha and carrot cake with S at Mocha Joe's and laughed at funny memories
9. Got 45 mins of work done
10. Spent an hour PLAYING like a little kid, being so wild silly loud stupid goofy hyper giggly sweaty stinky ridiculous crazy happy!!! THANK YOU C, G, B, N! I sooooo needed that!

Monday, November 23, 2009

Ambivalence

Oh, why am I such a jumble?!?!
Now my thoughts are going to the opposite extreme: what if I don't even really need radiation?? What if I could get by with just the simple lumpectomy? I only have this tiny, tiny, early stage, very well-defined tumor that I think could easily be removed with clear margins. I have the "good" kind of cancer, even though that's an oxymoron - cribriform mucinous carcinoma is very slow-growing and unlikely to spread. It's quite possible that it could just stay in me and NEVER grow large enough to really harm me... or it could even just dissolve on its own. Of course, now that I'm aware of its presence, I can't take the risk of letting it be. I do have to have it removed from my body. But if it's so small and encapsulated and not spreading and can be surgically removed with clear margins, I DO wonder if the 6 weeks of radiation is truly necessary.

Oh, I'm so impatient to meet with the oncology team. I have so many questions. I want to know what the risks of radiation are, vs. the benefits.

It's interesting that the cancer is in a part of my body that I have the option of removing, you know? If there was cancer in my brain or lungs, for example, I could not just have my brain or lungs removed! But I could have my breasts removed without my health suffering or losing any of my body's abilities and functions. That's pretty amazing. Having cancer SUCKS, but wow, thank Goddess it's in a part of my body I could afford to lose if necessary.

Risk

It's been interesting to me to see how a cancer diagnosis changes my life in many ways, both big and small, that I couldn't have predicted... for example, I get so many hugs now from people whom I barely know, and also people whom I've known for years but never were the hugging type!

And then there are ways in which this cancer diagnosis has not changed my life. I think many people, upon receiving a cancer diagnosis, feel compelled to make big changes to live a healthier lifestyle....whereas I feel glad to not have to make big changes, because I was doing so well pre-diagnosis anyway. I sleep well, eat well (mostly :)), exercise, avoid chemicals, laugh a lot. I've added a multivitamin (thanks, Mom!), and an immune-boosting 5-mushroom formula (thanks, Mom!), but really don't need to make huge lifestyle changes. Which is a relief. I just read the news aboug Sigg water bottles having contained BPA until 2008 - http://www.triplepundit.com/2009/09/surprise-sigg-bottles-did-contain-bpa-after-all/ - and while I'm pissed off that people who bought Siggs specifically to avoid the BPA in plastic bottles were cheated, I'm also glad I've been drinking out of my glass mason jars for years. It's a fairly common practice in the rural town of 12,000 people that I live in, but I do get strange looks when I'm drinking out of my mason jar anywhere but here... and yes, it's big and clunky and heavy, but I don't care.

On the other hand, I feel heavy with the knowledge that in many ways, it doesn't matter what I do or don't do in an attempt to take care of myself and stay healthy. Because even while doing everything "right," I was dignosed with BC. Of course the government won't admit that there's a correlation between environmental pollutants and cancer, but how can there not be? Humans have been treating the Earth like shit for decades and decades. The Earth is wounded, because of us - the air, soil, and water are contaminated. Thus, there is no way for any human to avoid contamination, either. When I was talking with a friend of mine about how angry I am to have cancer in my body despite "doing everything right," she said that a better question than why do I have cancer is why doesn't everyone have cancer? It's depressing but true.

I'm really trying not to go down the "WHY ME?" road, because that won't do any good right now. But receiving a cancer diagnosis despite being super healthy and consciously living a healthy lifestyle has made me think a lot about the concept of risk. When the doctor said the words, "They found something...they're calling it breast cancer," the first thing I blurted out was, "BUT I DON'T HAVE A SINGLE DAMN RISK FACTOR!" But you know, merely being alive means risking death. Not to get all melodramatic, but it's true. Life itself is a risk. Living is FULL of risks that we can never predict or understand, and we have to just keep on living anyway. It's so strange to me that we humans get scared of the unlikely dangers, such as dying in a plane crash, getting struck by lightning (or having cancer :P ), and then those rational people tell you, "Statistically, you're much more likely to get in a car accident than [insert unlikely danger here]!" Well, yeah. But I've been driving almost daily for about 15 years and have not been in a car accident, and I do have cancer. Go figure!

I've been trapezing for almost 4 years now, despite the inherent risk. It is a dangerous activity. I'm lucky to attend what's probably THE most safety-conscious circus arts school in existence, and I have learned how to trapeze as safely as possible, but still. There are big mats. You do fall. You do get hurt. But you trapeze anyway, because it's worth it. Because more often than not, you don't fall. My life would be SAD SAD SAD if I chose to forego the incredible joy that trapeze gives me, in order to avoid the potential dangers of it.

So why does part of me still want to have a prophylactic bilateral mastectomy?!?! It sounds crazy, even to myself, but I still sometimes think about it. I am already so scared of going through a lumpectomy and radiation only to have the BC return sometime down the road. Having BC once makes it more likely that you will have it again, but chopping off your breasts decreases your risk by about 90%. I do not plan on having a baby, and thus would not be breastfeeding... so my breasts are just aesthetic at this point. They are pretty awesome breasts and I love 'em, but I would SO much rather be HEALTHY than have nice breasts.
I have to go through genetic testing and find out if I test positive for mutations in the genes that increase the risk BC, and have long talks with my oncologist about how likely I am to get BC again, and weigh the risks and all of that. And probably I will not end up getting rid of my breasts. Probably that would be a ridiculously extreme measure, considering I only have a tiny Stage One tumor in ONE breast. But my partial-and-irrational desire to prophylactically get rid of my breasts is similar to the panic some people feel while flying in an airplane once a year, despite the fact that they're much more likely to get hurt in the car they drive every day.

Sometimes statistics of risks are just meaningless. Here's an interactive "Breast Cancer Risk Assessment Tool." - http://www.cancer.gov/bcrisktool/ I answered the questions as I would have answered them 2 weeks ago (i.e. before diagnosis), and the tool told me that the likelihood of me NOT getting BC in the next 5 years is 99.7%. WWWRRROONNNGGGG!!! AND, I had to lie and say I was 35, because they don't even calculate the risk for women younger than that. So if it had taken my actual age into account, it probably would have told me I had a 99.9% likelihood of not having BC.

At the very least, I am going to tell my surgeon straight up that my priority is my breast's health, not its appearance. With a lumpectomy, the surgeon doesn't just remove the tumor itself - she also has to remove a sizeable chunk of tissue surrounding the tumor, to make sure to remove all of the diseased tissue (well, as much as possible). That is called getting "clear margins." I have heard of some women having to have second lumpectomies because during the first one, the surgeon did not remove enough tissue to get clear margins. I want my surgeon to know that she is free to take as much of my breast tissue as she damn well pleases, to make sure all of the cancer is out of me. I will happily live with a lumpy, weird, dented, CANCER-FREE breast. Or one breast or no breasts. And I will still love my body and me.

Friday, November 20, 2009

Lost count of the days...whatever.

So when I got the mail today, there was an envelope for me: "HEALTHCARE CLOSURE NOTICE." My heart dropped to my knees. My insurance company was claiming I didn't mail them my premium check this month, but I swear they never sent me a bill, because that's something I sure as hell would have paid immediately upon receiving it. The letter went on to say that if I pay in full by the end of the month, my coverage will continue. I immediately called VHAP to see how much I owed, and immediately wrote the check and put it in an envelope and addressed it and stamped it and got right back in the car to drive around town looking for one of those big blue mailboxes to put it in. Why is it that when you're not looking for them, they're everywhere, and when you're trying to find one, they're nowhere in sight? I was in such a panic. But now the check is in the mail and DEAR GOD, CONTINUE MY COVERAGE.

Thursday, November 19, 2009

TRAPEZE!!!!


Oh I feel SO good right now!! I went back to trapeze!! It was my first time back on the bar since being diagnosed with BC. I found out about the BC last Monday, and was too much of emotional mess to make it to class two days later, or to go to open studio the day after that. Then yesterday was class again, but I decided to go to the BC support group, which was at the same time. I'm glad I went, because I met a woman who told me all kinds of wonderful things about the surgeon I will be soon seeing, and that was reassuring. But you know, I don't think I need to KEEP going to that support group. NECCA is my support group. Trapeze is my therapy.

I went to open studio tonight, along with J, M, ML, and A, and had such a great time. I felt like ME again. I laughed and played, and I played HARD! I was determined to do a pullover angel again, which I hadn't even attempted since last spring, and after about 15 attempts, I DID it!! And I got my full mill circles back, and did catcher's lock roll up/down (my favorite trick ever), and did a bird's nest while spinning, until I felt sick and got the giggles. And best of all, I did back hip circles, which I had attempted a long time ago but had never been able to do successfully! I had been so worried lately about backsliding and losing my trapeze skills and confidence and strength, so it was such a relief to discover that I can still trapeze just as hard as ever. Successfully completing a new trick for the first time made it even better, because it meant I was actually progressing, not merely holding steady. I worked so hard on those back hip circles that my forearms were burning with pain and the bar scraped some hair off of my right arm, and my wrist is bruised from all the pullover angels, and I freakin LOVE IT. It's so good to be back.

Not only did I trapeze for a solid hour, I finished off the workout with 7 pull-ups! I WIN, CANCER!!

Thank you, Universe

A few minutes ago, I wrote a cranky entry about how pissed off I am about the space BC is taking up in my life right now. But as always, I am a big jumble of thoughts and emotions, which often contradict each other.

I have ALSO been thinking about how, for someone with cancer, I am so lucky and blessed in so many ways. My mom and I (hi Mom!) have been talking about it...without getting into the details of my spiritual beliefs and practices here in my public blog, I will just say, I do strongly feel guidance and protection from Spirit. I will use Spirit as a generalized term for what others may call God, G-d, Goddess, Jesus, angels, the Creator, Allah, spirit guides, etc., etc.! Suffice it to say, I feel the universe looking out for me in a strong, real way, and am content to not name or define it because I don't think it can truly be named or defined anyway. "The Way that can be spoken of is not the Way..."

Anyway. :) What I mean is:

- I am so lucky to have health insurance from the state of VT.
- I decided "on a whim" to get a physical, despite being so healthy that it seemed unnecessary to do so. That's the guidance of Spirit right there.
- The doctor found the lump in my breast, and ironically, it was Breast Cancer Awareness month!
- I got the ultrasound and biopsy, but several times, I almost decided not to bother, because everyone was so "sure" the lump was benign. Still, something kept nudging me towards continuing with the tests, even when on the day of my biopsy appointment, the surgeon spent the first 20 minutes talking about how it was SO unlikely that I had cancer that it would be okay if I chose to not get the biopsy and instead monitor the lump on my own for 6 months to make sure it didn't change. As my mom said, even when the doctor "dangled the 'wait-6-months-and-see' bait" in front of me, giving me the opportunity to forego the thick-as-pencil-lead needle that I was terrified of, I chose to have the biopsy that day. Imagine if I hadn't??
- Even though I was SO SURE the results of my biopsy would be benign, I asked my Mom and Andee (hi Mom and Andee!) to come with me to the appointment anyway. And then when he said the C-word and I had a meltdown, THANK GOD I had two people I love so much there to help me. Mom and Andee, you help me more than I can even explain, and I love you!
- Just two days before I was diagnosed with BC, I had reconnected with a dear close friend, helping her celebrate her 100% healing from BC. What incredible timing. She is now helping me navigate these new and scary waters, providing me with both practical and emotional support to a depth that no one else can because A) we've been friends for 12 years/she KNOWS me! and B) she just went through all of this herself!
- My BC is THE BEST kind to have, if you have to have BC at all. It's Stage 1, Grade 1, a TINY TINY tumor. There is a 100% survival rate for women with the type of BC I have.
- I have THE MOST AMAZINGLY WONDERFUL FAMILY AND FRIENDS IN THE WORLD to help me get through this. It's ironic... I have been severely underemployed for nearly a year now, barely barely working enough hours/making enough money to pay my rent and bills, and it sucks being poor. But the flip side is that while I've been poor in money all this time, I've been downright wealthy in terms of TIME and FRIENDS. Not having enough work has meant I've had lots of time to spend with my friends/family/people I love and to put lots of energy into nurturing those relationships, and that has made me really happy. And I did not know how very, very important my web of friends would become to me. Imagine if I were one of those workaholic types who worked 60 hours a week and thus had plenty of money but almost no friends because I didn't have time for friendships??? I would be pretty screwed right about now. Instead, I still don't have much money, but what I do have is a freakin TSUNAMI OF LOVE flooding my being every day, and that is so much more important to me. THAT is what will help me through this.
- I decided to go to [a bigger hospital] instead of continuing with the hospital where I'd had the biopsy (thanks to inside information from an in-the-know friend! THANK YOU!). I didn't know any of the surgeons there, but they ended up assigning me to the DIRECTOR of the BC program... who seems amazing. Last night I went to my first BC support group, and the first woman I talked to had also been treated by this same doctor and had all kinds of wonderful things to say about her. She seems to be everything I hoped for in a surgeon.

So although I wish I did not have BC, I am so grateful for all of the ways in which Spirit, and my friends and family, are helping me.

Day 11. Grrrr.

You know what, I am sick of dealing with cancer. Today I am feeling frustrated because I feel like cancer has taken center stage in my life, and I don't want it that way. I don't WANT BC to be the focus of my life right now. In some way it has to be, so that I can get it OUT OF ME as quickly, safely, completely, and painlessly as possible. But I feel like I'm living in a bubble right now. I feel so "out of the loop" in terms of things like what's going on in my friends' and family members' lives, what's going on in the rest of the world, etc. I haven't been following the news AT ALL - I have no time to read the news, and every time I turn on NPR my mind starts drifting within about 30 seconds and I have to turn it off. Most conversations I've been having with friends and family lately are mostly about BC - how I'm feeling, what the next steps are, the details of what's going on, etc. I wish we didn't have to be talking about BC. I don't mean that in the "distract me from my troubles by talking about something else, please!" kind of way... I mean I wish I didn't have BC at all so it wouldn't even be a relevant topic of conversation.

I want to just FORGET about the BC and stop having to talk about it, read about it, schedule appointments, go to appointments, blah blah. I just want to go back to the way things were 2 weeks ago. I know I can't. This is just my inner 5 year old talking.

I CAN'T ignore the BC right now because I have to:
- make a thank you card for the doc who found the lump
- ask said doc for a referral to the naturopathic clinic so that my insurance will hopefully cover it
- read the information said clinic just sent me in the mail, and complete the enclosed paperwork
- follow up with Dr. R's office to make sure my MRI results get sent to the new hospital
- talk with people for more advice on how/what to tell the children I'm currently working with, about how long I'll have to miss work and why
- research more about what changes I could be making to my diet and lifestyle to stay as healthy as possible, since staying as healthy right now will help me heal quickly and easily from surgery and radiation.
- Call my insurance company to ask for more specifics about what they'll cover and what I need to do to make sure things are covered, because I still haven't talked with anyone from my insurance company since this whole thing started and that makes me worried
- etc.

So those are BC-related things that I have to focus on and do. Theoretically, I could just do those things and then go back to ignoring the BC while focusing on other things instead. But it's hard! It's HARD not to think about and talk about BC! And my focus on BC will only INCREASE once I've actually had surgery and have to stay home and recover and really can't do trapeze and then need radiation for a freakin MONTH AND A HALF. I am pissed off at the BC for taking up so much of my time, energy, and focus.

Wednesday, November 18, 2009

Day 10 - MRI

I just got home from the MRI. Glad it's over!

Thanks to Sue's Boob Blog, I knew I might have to have a contrast dye injected into my arm before the MRI. None of the doctors/hospital staff told me about this in advance - it wasn't until I was in the waiting room filling out the paperwork that I was notified about this. I really think they should tell patients IN ADVANCE about that, because it makes the procedure more invasive. Magnet stuff isn't that big of deal, but to a lot of people, needles ARE. I had not had blood drawn/an IV in about 16 years! But it turns out I have "great veins," so yay for not having to be stuck multiple times.

The MRI was unpleasant but not horrible: spending 20 minutes lying completely still, face down in what sounds and feels like a private space ship, while there's a needle in your arm and you're not allowed to breathe deeply.

I had to lie face down on what was kind of like a massage table, with the face rest and everything, except obviously there was no nice massage. And my boobs had to hang down in the holes in the table. They offered me headphones, asking what kind of music I wanted to listen to... not knowing what my choices were, I said, "Just something relaxing." Silly me, I am thinking of Gregorian chants, tribal flute, maybe a rainstorm... I end up with Phil Collins shit interspersed with commercials. I could barely hear it anyway, since it was drowned out by the loud MRI machine - the knocking and whirring and super loud hum/buzz.

The hardest part, by far, was not being able to breathe deeply. They TOLD me, "Don't breathe deeply...take slow, shallow breaths." Yeah, for TWENTY MINUTES!! Because if you move too much, it messes up the whole thing and you have to start over from the beginning. About halfway through the procedure, they told me, through the headphones, that they were going to inject the dye into my arm and I would feel "coolness and pressure" in my arm. Instead, I felt weird all over - for a few seconds there was a weird taste in my mouth and my tongue felt numb as if I'd just drunk too much Kava, and my other arm got a bit twitchy, and my heart rate jumped up. I started feeling panicky and thought about squeezing the squeeze ball they had placed in my hand before sending me into the tube, which they had explained would set off an alarm if I squeeze it and they'll stop the whole thing, but then we would have to start from scratch. So I didn't want that. But I couldn't tell if I was feeling panicky because my heart was racing, or if my heart was racing because I was feeling panicky. You know? And the challenge for me was to get my heart rate down without deep breathing - which of course would be my first and automatic strategy. Shallow breathing increases anxiety! So I just mentally talked myself through it. The problem was that the little notice I had read about the dye, back in the waiting room, stated: "One in 400,000 people have a life-threatening reaction to the dye." Most people read that and feel relieved, because the chance is so tiny. I, on the other hand, have completely lost faith in statistics, since there was only a 1% chance that I had cancer in the first place. If that 1% chance that I had cancer turned out to be reality, then hell, I could be that 1 person in 400,000 who dies from the dye!!! So I lay there breathing shallowly and trying to talk myself out of my panic, trying to ignore Phil Collins and instead mentally reciting pertinent Tao te Ching chapters and Goddess chants.

Finally it was over and I got to come out of the tube and get the stupid needle out of my arm, and go get dressed again. I feel like such a little kid, shuffling around in a hospital gown and pants and booties 3 sizes too big. Nothing EVER comes in my size.

Mom and I went out for tea and a walk afterwards, which was great. Now I'm trying to drink buckets and buckets of water to get the dye flushed out of me.

Tuesday, November 17, 2009

night

This week I've been staying up at least an hour later than I used to, even when I'm really tired. My body is so so ready to go to sleep... but my mind won't shut off. I procrastinate with actually getting under the covers and turning off the light, to avoid being alone in the dark with my thoughts. I try to relax my body and breathe slowly and drift off to dreamland, but it's more like:

Deep breath in.......deep breath out..... tomorrowihavetocalldoctorEtohaveherwritemeareferralsoinsurancewillcover -
deep breath in......relax....deep breath out.... deep breathing.....
didiplugmycellphoneinbecausethebattery -
breathe in.....breathe out.....breathe......
iwonderifsurgerywillbeindecemberorjanuarybecauseifihavetomissworki -
breeeaaattthhheee.......
ohshitiforgottotaketheseconddoseofmushroomcapsu -
DEEP BREATH....DEEP BREATH....
howbigismyscargoingtob -
BREATHE... DEEP BREATH IN...
idontknowifi -
DEEP BREATH OUT... AND IN....
butwhatif -
Breathe....
isthe -
breathe......
i -
ZZZZZZZzzzzz

Monday, November 16, 2009

Help me Google?

I emailed the Nurse Navigator at the hospital to ask what type of cancer I have, and she just emailed me back:

CRIBRIFORM MUCINOUS CARCINOMA.
GRADE I, WELL DIFFERENTIATED.


I am dying to Google it and find out what that IS, but I am unfortunately going to be late for a meeting if I don't leave now. Anyone want to Google it for me and comment back here to let me know what you find?? Apparently it's a really rare type of BC.

Thank you thank you!!

ehfjkashndf;uwaehf;jaks

Oh God. Why did I just look at a series of very graphic, close-up photos of a full mastectomy surgery in progress, right after breakfast???

Sunday, November 15, 2009

Day 7 - YOGA



I just did 45 minutes of yoga, here in my room, and feel so good.
I cried a bit during the hip-opening asanas, and giggled when I kept losing my balance in others, and could have stayed in balasana forever.
I sent lots of love into my breast/heart chakra during savasana.

BC "awareness"

When I went to Amazon dot com and did a search for "breast cancer," up came a list of 57,905 books. That's a lot. But then I noticed that there are also 510 "breast cancer" HOME & GARDEN products. What the...??! Naively wondering what in the world a "breast cancer gardening product" would be like, I clicked the link, and was amazed to discover just how HUGE this "breast cancer awareness" stuff is. Did you know you can have "breast cancer awareness" gardening sheers, towels, measuring cups, and a $269 Kitchen Aid mixer that is pink to increase your awareness of breast cancer? When you're gardening, you can rest your knees on a squishy pad that has a big pink ribbon printed on it. When you're in the mood for a treat, you can use your "Bonjour Pink Hot Chocolate Maker and Mug Set." But be careful not to get hot chocolate on one of the 376 pieces of breast cancer jewelry you may be wearing. One of these pieces may be a lapel pin you are wearing to announce that your Basset Hound is opposed to your breast cancer.

Why, you could spend your ENTIRE DAY maintaining an awareness of your breast cancer. You could sleep in your pink pajamas and then wake up and pat your Basset Hound with the pink collar, before getting a glass of water from your filtered pitcher with the pink ribbon on its lid. If your clothes are too wrinkled to wear, you can get the wrinkles out with your
Jiffy Steamer 1901 ESTEAM Travel Steamer, Pink Breast-Cancer Series (TM). Eat some breakfast (strawberry yogurt = pink, and so supportive of the fight against breast cancer) out of your pink bowl. If by the end of breakfast you have forgotten about your breast cancer, it's okay - maybe on your mantle you have this Breast Cancer Support "Hope Is So Uplifting" Music Box. The lady bug, with pink ribbons instead of spots, is "dressed in breast cancer awareness attire" and she even has balloons.


Or if it's a windy day, your
Windchimes of Hope may be able to remind you - jingle jingle breast jingle cancer jingle jingle. If you have breast cancer at Christmas, you can make sure your tree is hung with the mermaid with the pink tail - making a SPLASH in the fight against breast cancer, she is.

So whenever you feel lost in the darkness, have a ribbon-shaped cookie with pink icing, turn on your stained glass breast cancer ribbon nightlight, and remember that
everyone is on your side, sister. Even the Tiny Miracles Rosie Breast Cancer Charity Baby Doll: So Truly Real.



Saturday, November 14, 2009

Thank You, and How to Help

I wanted to say thank you again to all of you for the phone calls, emails, texts, FB messages, blog comments, and hugs on the street! Your support means so much to me and I am totally soaking up all your love.

At the same time, I may not be able to return all of your phone calls and emails individually, and for that I apologize! Most of you know I've never been very good with the phone anyway, even before all of this... :\

I also want to let you know that while I very much appreciate your offers to connect me with other BC survivors you know, I am happy with the great support system that I have now - which includes a close friend (both close in my heart and close geographically) who has overcome BC. I also will be attending a support group for BC survivors at my local hospital, twice a month, and I have connected with an online group of women who were diagnosed with BC before age 40, like me. The support of these women - along with my friends' and family's support, even if they/you have not experienced BC - is wonderful for me.

I haven't counted, but I'd estimate that you all (friends, family!) have given me the names and sometimes contact info of at least a dozen BC survivors that you know!! While I feel overwhelmed by the idea of calling or emailing all of those women - most of whom I don't know - it also amazes me to know just how many BC suvivors my friends and family members know. I love hearing "My [friend/sister/mother/aunt/etc] had BC [number] of years ago and now she is doing GREAT!", because it helps me realize that although BC is apparently so sadly common that nearly everyone knows someone who has had it, it is also so TREATABLE. I know that some women do die of BC. And maybe some of you know women who have died of BC and just don't want to tell me about that. I, too, had a friend years ago who died of BC. But it is true that there have been tremendous advances in BC care over the years, resulting in many many women not just surviving, but THRIVING, after having had BC.
So please give all those BC survivors you know hugs and well wishes from me, but don't be offended if most of the time I don't actually call or email them!

Many of you awesome people have offered to help me if I need help. Thank you!! Here are more specifics about that:

I am already feeling overwhelmed by all of the unsolicited and sometimes conflicting advice I am receiving about how to deal with my BC diagnosis. My brain can't process it all right now and it gets all jumbled up in my head kind of like this:

eat more mushrooms stay away from soy have some cranberries this book is awesome it helped my mom so much i knew this woman who had BC watch comedy movies all day visualize lots of white light eat organic make sure to destress yoga is great are you getting enough protein omega3 is so important deepak chopra acupuncture go to sojourns have a good luck breast susun weed's book is from 1996 want chicken soup oh wait you're vegetarian elevate your thought patterns ignore the doctors use astragalus red clover energy healing my chiropractor will help try talking to your tumor hydrate hydrate hydrate antioxidants in coffee stop coffee green tea lots call my aunt zoloft helps with fear write a book try this blog site come pat my cat flax seeds must be ground let go of anger breast cancer cape cod 20% higher plastics leaking chemicals pollution use affirmations

And even if I AGREE with the stuff, it's just too much at once! It would be much more helpful for me if you could email the information to me, or the link or whatever, so that I can choose whether or not to look it up... and then look it up at a time when I have the energy to do so. Everyone's BC and body and needs are different, and what helps one person might not help another.

Also, it is not helpful to have people suggesting that the cancer in my breast is an illusion, a manifestation of anger, or something I can dissolve with the power of my mind. If you feel that cancer "is not real" and can be sent away with an attitude shift, or left alone to melt away in its own time, please do not tell me. I believe strongly in the power of positive thinking, energy healing, alternative therapies, etc., and I will be employing all of these strategies in conjunction with what I feel are the necessary medical interventions to remove the BC from my body. i.e. YES I AM HAVING THE TUMOR SURGICALLY REMOVED!

Also, please do not tell me that cancer is a gift. If it is a gift, then I want the receipt!

Help that I WELCOME:

1. Continued emails, voice mails, FB messages, etc., with love, support, prayers, good wishes, etc.
2. Snail mail surprises! Email me if you need my address...don't wanna post it on a public blog
3. HUGS!!
4. Vegetarian food without a lot of sugar (EDIT: I meant to add, when I am recovering from surgery. I'm doing okay right now!)
5. Ask me questions
6. Allow me to not answer the questions if I'm too tired or overwhelmed or don't want to
7. Make me laugh
8. Let me cry
9. Allow me my weak moments. I appreciate the sentiment behind "You're so strong!!", and yeah, SOME nights I am able to memorize chapters of the Tao te Ching, add melodies to turn them into songs, and joyfully sing myself to sleep. But other nights, I dream of giant needles and cry into my pillow.
10. Keep telling me about you and what's going on in your life, to the same extent that you did before my BC diagnosis. I still want to know about it all! You don't have to hide your troubles in an attempt to not burden me or because it's "nothing compared to BC"!
11. Be patient if I don't currently have as much energy as I did before. Learning about, talking about, and coming up with a plan for treating my BC is already an exhausting process, and once the actual treatments start, I imagine my energy may be depleted even more. I am still trying to adjust to everything, and so far, I've found that I'm overestimating my energy level - e.g. saying, "I would love to [participate in some fun activity] at 7:00 on Friday!" and then discovering that by the time 7:00 rolls around on Friday, I'm too tired and have to back out. I don't like doing that, and I am trying to be more realistic about what I can and cannot commit to doing, but it might take me a while to figure out how to not overextend myself.
12. If you want to visit, PLEASE call or email first to set up a time to do so, instead of just coming over. I may be sleeping or showering or too grouchy for visitors or wearing something really stupid or wearing nothing at all or not able to take a break from working or on a roll with my writing.
13. Despite everything I have written here, all the DOs and DON'Ts... don't be afraid to talk to me for fear of saying something "wrong." If you blurt out "Have you heard about these amazing polka dotted German mushroom capsules?! My aunt found them so helpful, I'll give you her phone number!", I am not going to bite your head off. :) I love and appreciate everyone's kind-hearted attempts, and I know that sometimes it is hard to know what to say and what not to say in these situations, and that you may be muddling your way through it all just like I am. It's okay. Really. I still like you.

Speaking of tired. I need to stop here for now!

Day 6, anxiety & random babbling

Oh, I am a big jumble right now.

On the one hand, I am feeling the happiest and calmest I have felt since being diagnosed 6 days ago. Yesterday, while I was driving, I had a super strong, overwhelming feeling that I AM GOING TO BE JUST FINE. I knew it so completely that I immediately started crying with relief.

At the same time, it doesn't mean I'm not scared anymore or won't have to go through awful things. It's just that that I can see the light at the end of the tunnel!! I know that I will be okay at the end of all of this, but I'm still scared to go through it! So many fears keep zipping through my mind, some "legitimate," some irrational...I am feeling scared of needles, and of suddenly waking up in the middle of surgery because the anesthesiologist is zoning out, and of having cancer in some other part of my body that I don't know about because it's never been checked/tested, and of my house burning down (?! WTF?? That has nothing to do with BC!), and of those "extremely rare" side effects of radiation therapy like LEUKEMIA or HEART INJURY (I read it on some website), and of having to quit work and going broke, and of nasty chemicals that are everywhere and unavoidable - in the water, air, and soil.

I'm also worried about my weight. My pants are getting loose in the waist. Some women are going to hate me for saying this, but - I only weigh about 115 lbs. right now and I seriously cannot afford to lose any weight!!! For approximately the past 15 years, my weight has been stable without me needing to consciously do anything. That is, I've neither attempted to gain weight nor to lose weight, because I haven't had to. But lately I have not had much of an appetite, which is rare for me. I love food. But lately... I keep forgetting to eat. Sometimes it takes me hours to remember that I should make myself eat breakfast. And I'm feeling picky and stubborn with food. Tonight THE ONLY THING I wanted to eat for dinner was spaghetti with butter, tomato sauce, meatless meatballs (YES I KNOW I should be avoiding soy!), parmesan cheese, and crushed pineapple. Nevermind that I didn't have a single one of those ingredients other than butter and had to go out and buy all of them in a rainstorm... it's all I wanted. Also in the past 2 days I have eaten nearly a whole batch of choc./PB "no-bake" cookies, which uses an ENTIRE stick of butter... but whatever.

It's funny, a few weeks ago, before I was diagnosed with BC, I intuitively started eating a super healthy, immune-boosting diet - I was eating a clove of garlic every day, and having miso seaweed soup for lunch every day, drinking that nasty ginger-lemon-garlic-apple cider concoction from the Co op, doubling my Juice Plus intake, and I even started eating tuna after being vegetarian for about 9 years, because I had this feeling I needed more Vitamin D and Omega-3s RIGHT AWAY. It was great that I was doing all of that stuff. So why am I now spending half the day not eating then stuffing myself with gluten-y, butter-y comfort foods?? Sigh.

I need to gain some weight. At least a few pounds. And you know, I was reading the breast cancer handbook that they gave me at the hospital, and it's full of stuff that doesn't apply to me and thus I probably should not even be reading because it just scares me unnecessarily. But there's this whole section on all of the different ways to get breast reconstruction surgery, and it's all this stuff about how new breasts can be created using your own stomach fat, or back or abdominal muscles and stuff, and that scares the crap out of me. I don't have enough stomach fat to create breasts, and I certainly don't want to give up MUSCLE!!! HELLO!! MUSCLES ARE IMPORTANT!!! Especially for trapeze!! Muscles are certainly more important to me than BREASTS. If I had to have my breasts chopped off, fine, I'll be boob-less. Having a flat chest would even make basing the volcano so much easier, because the flyer wouldn't kick me in the boobs anymore! (Doubles trapeze talk - only a few of you are gonna understand that!) I'd rather be boob-less than have my muscles weakened! But all of that is irrelevant because I'm not gonna need a double mastectomy! Sheesh.

I forget what else I was going to write about.

PSA

Friends...
You do breast self-exams on a regular basis, right? RIGHT?? Please, please do. Here are instructions: http://www.nationalbreastcancer.org/About-Breast-Cancer/Breast-Self-Exam.aspx

I almost never bothered to do self-exams. And it makes me wonder how long my lump would have gone undetected, since I also had no reason to start getting routine mammograms for several more years.

Friday, November 13, 2009

Day 5 - details & plan

So, today is my 5th day of knowing I have breast cancer. I'm gonna start calling it BC, okay? It looks nicer that way.

Here are all the facts and details, as I know them so far... because it's tiring to keep saying all of this to people individually!

It's Stage 1, grade 1. The tumor is in my left breast, 8 millimeters by 7 millimeters in size, which is very small. Not even a centimeter. It is "well-differentiated," which is good - it means its shape is clear, it's not a spider-webby thing.

Treatment will most likely be:
1. An MRI of both of my breasts, to help create a more detailed map for surgery. This will be early in the morning on Nov. 18, unless I am menstruating, and then it may have to be rescheduled. (Your breasts go through changes during your menstrual cycle that may make the MRI image more difficult to interpret).
2. Lumpectomy surgery - the REMOVAL OF THE TUMOR! Along with this will be a sentinel node sampling - they'll check my lymph nodes to make sure the cancer hasn't spread there.
3. Spend a month healing from the lumpectomy (I think).
4. Assuming my lymphs are fine, I will most likely need 6 weeks of radiation therapy - 20 minutes per day, Monday through Friday. The radiation will be directed only to the very specific area of my left breast, to kill any remaining cancer cells. It's not my whole body that's getting radiation.
5. I don't know yet!

I don't yet know where I will be having surgery, or when. My mom is helping me with those phone calls. Right now, it seems likely that surgery will be at Darmouth-Hitchcock in Lebanon, NH, and the MRI and radiation would be at an affiliated cancer center in Keene.

I will update with more information when I have it.

Wednesday, November 11, 2009

Day 3 - Love & Gratitude

What I want to talk about today is how amazing my family and friends (YES, YOU!!) are. I have been so wonderfully overwhelmed by the outpouring of love and support that I have been receiving ever since the diagnosis. I am so, so, so grateful, for all of your emails and phone calls of support, the hugs and kisses, the well wishes, the sweet surprises, the reassurance you give me when I call you in tears, the way you make me laugh, the way you listen to me ramble on about my fears and uncertainties, the way you help me find the information I need, your outrage on my behalf, your faith in my strength to get through this, your prayers, your incredible offers to hop on a plane right NOW if I ask, the cookies, the soup, the mochas, the way you help me keep my life as normal as possible even when it's not, the way you offer rides and a hand and a listening ear and a place to stay, your attempts at words even when you don't know what to say, your patience and understanding, your herbal remedies, the way you help me get answers to my questions, the healing energy you send to me, your optimism, your love.

THANK YOU.

I've been compiling all of your wonderfully supportive emails/FB messages/etc., printing them out, and sleeping with them under my pillow. It's been helping a lot.

Tuesday, November 10, 2009

Overwhelmed

I have now known for a day and a half, that I have breast cancer. I am feeling SO OVERWHELMED by everything that I don't even know where to start.

I don't even know what to start writing about! Should I give an overview of the factual things that I know about my pathology report? Should I write about all the wonderful support I've been receiving from friends and family? Or babble about all of my fears? Or ponder the treatment options?

Should I be posting on the message boards of the Young Survivor's Coalition, or Googling the most recent cancer books, or calling my health insurance company, or paying the electric bill, or sending flowers to the physician who found the lump in my breast, or forgetting about it all and watching the Gilmore Girls? Should I be researching the cancer specialists in VT, or calling one of the dozens of phone numbers friends have given me of friends/relatives who have also survived cancer, or reading the breast cancer handbook that the surgeon gave me, or emailing my employers to figure out my work schedule, or returning people's phone calls and emails of support? Should I be asking my Green Witch friends for herbal advice, or going to my mom's homeopathist, or calling the hospital again to ask when my MRI appointment is, or stocking up on miso soup and garlic? Should I be adding graphics to my blog, or trying to take a nap, or calling the hospital to have my tissue sample sent to another pathologist for a second opinion? Should I be asking my friends or family to look at this list and tell me what to do, and who should I be listening to? Should I just do some yoga and meditate for a while and ask Spirit for guidance, or should I be doing the meeting minutes, or cleaning the litter box, or setting up an appointment with my "patient advocate" to ask her what grade of cancer I have and what a sentinel node sampling procedure is like? Should I be thinking ahead to the month and a half when I'll probably need daily radiation treatments in Keene and start searching now for someone to sublet my room for that time while I stay in Keene, or should I be calling about that part-time job offer I received last week, or should I be soaking in a relaxing bath, or buying a new water filter so I'm not drinking tap water, or practicing saying the words "I have breast cancer" out loud so eventually I can say it without crying?

I AM SO OVERWHELMED. There is so much to be done and I don't know where to begin.

Day 2

It was so surreal to wake up and realize, yup, still have cancer today, too. It's even more surreal to have learned that by the time a cancerous tumor has reached the size of one centimeter, it has been growing in your body for approximately 10 years already.

I had this evil little blob of cancer in my body during THIS?



I had cancer during THIS?



And THIS?



REALLY?

Part of me freaked out this morning and thought, "I can't go to trapeze class tomorrow! I have cancer!" But apparently, I have had cancer the ENTIRE TIME I have been doing trapeze. Right from the very first class, and all the way through last week's class. Last week, I did trapeze while having cancer. So why shouldn't I this week?

Soon enough, all of the procedures and treatments will begin. The MRI, genetic testing, sentinel node sampling, lumpectomy, radiation, and probably procedures I don't even know about yet. And yes, surgery will prevent me from doing trapeze for a while. And if, God forbid, I need chemo, that will probably prevent me from doing trapeze and LOTS of other things, for at least some period of time...

But right now, why SHOULDN'T I be doing trapeze, and running around town in goofy costumes, and hula-hooping in the rain, and going out with friends for double mochas with whipped cream?

WHAT??

Last month, I decided "on a whim" to go get a physical. I hadn't had a physical in years, because I've been so healthy, so it seemed silly and unnecessary. But I decided to go, just for the hell of it...I loved filling out that form, checking off "no, no, no, no" for all the health problems it asked about. Dr. E checked my blood pressure - great! My lungs - so clear! My heart - healthy! My weight - just right! My ears - doing well!

Then she palpated my breasts, and found a small lump in my left one. TINY, about the size of a pea. She thought it was probably benign, but suggested I get an ultrasound, "just to be sure." The radiologist looked at the ultrasound and was "98% sure" it was benign, but suggested I get a biopsy "just to be sure." The surgeon completed the biopsy and was "99% sure" it was benign, but scheduled me an appointment to come in and officially hear the results of the pathology report anyway.

This morning, I went to the hospital with the meeting with Dr. R. It was a beautiful, unusually-warm, sunny day, and I was eager to get this appointment - which I had been referring to as "the official 'yay, you don't have cancer' conversation" - out of the way. On the way in, I teased Mom and Andee, who were accompanying me to the appointment and had been with me for the biopsy, that the goal was to not let Dr. R talk on and on as he has a tendency to do. "I just wanna hear, 'You don't have cancer,' and then we can go!" I said brightly. I was cheerfully chattering away, right up until we entered his office. I greeted him and went to shake his hand, but he avoided my eyes and did not smile in return. That's when I knew. He asked tentatively, "Has anyone told you anything about this yet?" I said no, and sank down into a nearby chair. He said, "We have the results back, and...they found something. They're calling it breast cancer."

That's all I heard. He did indeed talk on and on for what felt like hours more, but I just felt like I was underwater, being churned around in a big ocean wave. At the same time, my breath was as shallow as low tide. I couldn't focus on anything. Cancer. Cancer. Not in ME! Not in MY BODY!

It doesn't feel real. It doesn't make sense to me. How can I have cancer?
I'm 30 years old.
I have no family history of breast cancer.
I am one of the healthiest people I know. I eat a vegetarian, largely organic diet. I exercise. I'm not overweight. I never drink, smoke, or do drugs. I use natural bodycare products. I have a fulfilling spiritual practice. I have a healthy body image/love my body, including my breasts. I get plenty of rest - usually 8 hours of sleep per night or more. I do yoga. I don't wear underwire bras. I don't use antiperspirant with chemicals. I did not begin menstruating at an unusually early age. I have the highest levels of antioxidants out of the several hundred people who have been tested with the biophotonic laser scanner in my dad's chiropractic office. I am so healthy that until the biopsy, I had not had a needle in me in about 16 years, other than for dental work. I can't even remember the last time I threw up, and I've never broken a bone, or been unconscious, or needed a cast or crutches, or had surgery, or had stitches, other than a few on my nose when I was one and fell while learning how to walk. I am happy. I am healthy. I say prayers of gratitude every single night for my life, my health, and the love that surrounds me. I am a good friend to myself and others. I take really good care of myself.

HOW CAN I HAVE CANCER?