Tuesday, November 9, 2010
This is my torso, which I recently made and decorated at a Forest Moon workshop. It shows how happy my breasts and whole being are today!
I am so, so grateful for my life, and for all of the love that's in it. I'm so grateful for the care I received from my treatment team; and for all of the support from my family and friends; and for my totally amazing girlfriend, whom I would not have even met, if I hadn't had breast cancer. Oh, life is such a mystery!
Thursday, October 7, 2010
[Reposted from my Facebook wall]
OKAY, EVERYONE, I’m ruining the game!!!
This is what’s making the ‘rounds on FB:
“Replying to Breast Cancer Remember the game last year about what color bra you were wearing at the moment? The purpose was to increase awareness of October Breast Cancer Awareness month. It was a tremendous success and we had men wondering for days what was with the colors and it made it to the news. This year's game has to do with your handbag/purse, where we put our handbag the moment we get home for example "I like it on the couch", "I like it on the kitchen counter", "I like it on the dresser" well u get the idea. Just put your answer as your status with nothing more than that and cut n paste this message and forward to all your FB female friends to their inbox. The bra game made it to the news. Let's see how powerful we women really are!!! REMEMBER - DO NOT PUT YOUR ANSWER AS A REPLY TO THIS MESSAGE- PUT IT IN YOUR STATUS!!! PASS THIS TO EVERYONE YOU KNOW :-)”
Where to start, where to start!! I’m not even going to bother taking the time to make this note of mine witty and funny and all of that, because really I’m just plain mad.
IF YOU WANT TO TEASE THE BOYS BY TALKING ABOUT SEX AND PRETENDING YOU’RE TALKING ABOUT YOUR PURSE, HAVE AT IT, but it’s an insult to those of us who have had breast cancer – or, hell, who have loved ones who have DIED of breast cancer – to pretend that this ridiculous game has ANYTHING AT ALL to do with breast cancer awareness. And as another breast cancer survivor puts it in her blog, “Who on this big blue planet is still not aware of breast cancer? I'm guessing somewhere deep in the Amazon, a monkey has tied a pink ribbon to a tree in honor of October.” We don’t need any more breast cancer “awareness.” We need a damn cure and prevention. We don’t need pink/ribboned dog bowls and toolkits and toilet paper and buckets of fried chicken and shoelaces, with pennies going towards research; we don’t need producers of carcinogenic products slapping pink ribbons on their crap in hopes that we mistakenly think they’re helping us instead of giving us more cancer; and we DON’T NEED people inventing and spreading silly, giggly, sex-talk games IN THE NAME OF BREAST CANCER AWARENESS!
If you want to help women with breast cancer and their families, donate money to an organization like Breast Cancer Action, or bring a meal to someone who’s going through chemo, or participate in a walk. If you want to help prevent breast cancer, educate yourself about diet and lifestyle changes you and your family can make (I recommend Anticancer by Dr. David Servan-Schrieber), reduce your exposure to environmental toxins when possible, and advocate for the producers of toxins to stop producing them and for the government to ban them. (The just-published State of the Evidence report, by the Breast Cancer Fund, is a great place to start). If you don’t at all want to focus on breast cancer, you really, really DON'T HAVE TO... just please don’t kid yourself/insult breast cancer survivors by thinking that you TALKING COYLY ABOUT YOUR HANDBAG is doing a damn thing to help end the breast cancer epidemic. This is even MORE ridiculous than last year's "post the color of your bra" game, which did nothing to get the BLOODSTAINS out of MINE.
http://bcaction.org/index.php?page=frequently-asked-questions%EF%BB%BF - Breast Cancer Action's FAQ
http://www.breastcancerfund.org/media/publications/state-of-the-evidence/ - State of the Evidence 2010 report (the connection between breast cancer and the environment)
http://www.anticancerbook.com/ - Anticancer: A New Way of Life, by David Servan-Schrieber
(Pass this on as you wish!)
Thursday, September 23, 2010
But today I had my 6-month check up with my surgeon. I was surprisingly nervous about it. Although I enjoy K as a person, I just was NOT looking forward to going back to the hospital, to talk about cancer, and have her feel my breasts to check for more cancer, and figure out a plan on how to be screened for cancer for the rest of my life. NO FUN!
Thankfully, the appointment went really well:
- Breast exam was totally fine; my breasts are healthy and normal
- K thinks my risk of recurrence is very low. She didn't argue with me about the mammography issue, which shocked me! She's fine with me instead having an MRI every year or even every other year!
- I don't have to have another check-up with K until the SUMMER!
- Since we didn't spend the appointment engaged in a mammography discussion (which is what I had expected), we instead got to spend the rest of it chatting and laughing about her dog and random stuff. So much better than talking about cancer!
Sunday, August 29, 2010
"Every little cell in my body is happy,
Every little cell in my body is well!
Every little cell in my body is happy,
Every little cell in my body is well!
I'm so glad that every little cell,
every little cell in my body is well!
I'm so glad that every little cell,
every little cell is happy and well!"
I used to sing along to this without even thinking about it. But now... I got to thinking. Cancer is not a disease in which foreign, evil cells infiltrate your body and your immune system has to fight them off. Cancer occurs when your own, formerly normal cells go rogue. These cells ignore all of the "rules" for normal cells, and start multiplying like crazy, get all cocky and think they're immortal, and try to take over your body and thus can kill you. I DON'T WANT TO SING A SONG TO MAKE THESE CELLS HAPPY! But a song that goes "Every little cell in my body except-for-the-cancer-cells is happy" sounds so clunky. How about "Every little cancer cell in my body is unhappy and dying"? Ha, so poetic.
How does it help my health to sing about EVERY LITTLE CELL in my body being happy, when some of the cells in my body FREAKIN SUCK? I don't wanna sing that song and have the cancer cells start cheering and dancing and throwing a party in honor of receiving my support and blessing, sheesh. Where's a song I can sing to make the cancer cells cry and wail and submit to apoptosis? (That's cell death - aPOPtosis. I like to imagine them all going POP! BANG! like balloons).
Stupid song. Stupid cancer.
[And yes, I'm mostly being facetious. You should know by now that unlike a lot of people, I absolutely don't believe that any song I sing, thought I have, mental image I conjure up, or prayer that I pray can really grow or shrink cancer!!!]
Sunday, August 15, 2010
This time, I was happy and felt great. M tentatively asked how it's going with the Tamoxifen, and had a smile just as big as mine when I reported that I haven't had any problems with it at all - no side effects! No hot flashes, no weird mood stuff, no pain, no nothing! She told me, "That's the best news I've heard all day!", and I was happy to be able to give happy news! And she calmed my one worry, which had been that a lack of side effects indicated that I wasn't metabolizing the Tamoxifen. She assured me that I am, especially when I told her about how my last period was different than it usually is - that's enough of a sign that the Tamoxifen's having an effect on me. I am so thrilled that the Tamoxifen is working, WITHOUT me having to experience horrible side effects.
It was a happy visit. So nice to be chatting and laughing instead of crying. Then M had to examine me - throat, heart, lungs, poke at my armpits, do a breast exam - and she said everything was healthy and great. SOOOOOO happy! And I don't have to go back till January!
Wednesday, August 11, 2010
I'm tempted to think that if I had such a healthy diet and lifestyle and was still diagnosed with cancer, maybe I wasn't doing ENOUGH and need to do even more. e.g. NO sugar, double the vegetables, double the exercise, take a gazillion supplements, sleep more, meditate for hours, try harder and harder, etc. And I'd have a lot of support/company if this is the viewpoint I chose - the prevention literature, and breast cancer support groups, encourage women to improve their diets & lifestyles to try and prevent cancer. The spiritual/new age social circle I'm in is full of people who believe in responding to cancer with energy healing, inner child work, visualizations, etc.
Another part of me, a BIGGER part of me, thinks that if i had such a healthy diet and lifestyle and was still diagnosed with cancer, maybe the cancer had nothing to do with my diet or lifestyle and was almost entirely caused by environmental toxins I couldn't have done anything to avoid,
since I grew up in a town where the breast cancer rate is 20% higher than the rest of the state, and I can thus cut myself a break. Instead of working even harder to make my diet and lifestyle even more healthy, I could enjoy big ice cream sundaes and all the pleasures I've been denying myself.
I'm trying to find the balance. I'll never know what really caused my cancer and much of it is outside of my control, but I feel like it would be irresponsible of me not to at least TRY to do everything I possibly can to prevent a recurrence, and so, I take 11 daily supplements, obsess over/highly regulate the food I eat, etc.
At the same time, I want to enjoy my life. And I am already so saddened by/frustrated with how many people (both with and without cancer) believe that cancer is self-caused; I don't want to contribute to that. The more I read/research/learn, the more convinced I am that cancer is MOSTLY caused by environmental toxins. (Read Living Downstream: An Ecologist's Personal Investigation of Cancer and the Environment, by Sandra Steingraber!) Thus, it doesn't make sense for me or any woman with breast cancer to beat myself/herself up over eating too many burgers or not exercising enough.
Dammit, I could do TEN PULL-UPS (yes, in a row, from a dead hang, forward-facing grip!) when I was diagnosed, and it's not like if I had only worked a little harder and been able to do 15, then I would have been safe from cancer.
The more energy I spend on trying to follow the health rules even more perfectly, the less energy I'm spending on activism... and I'm at the point where I feel like helping heal the planet is what would really help heal my body, and yours, and everyone's. Cancer's not just a personal problem - it's a societal one. Yes, I can try my best to avoid hormone-laden dairy products, but the hormones shouldn't be in my milk in the first place. Yes, I can buy local, organic apples, but if the receipt I receive at the cash register is printed on paper coated with BPA, it makes no difference that the apple I chose was pesticide-free because it's contaminated now anyway. Yes, I can choose to filter all the water I drink, but if I then shower in that contaminated water, it gets absorbed into my skin anyway. Preventing cancer isn't just a matter of each of us making better choices as individuals or changing our daily behavior. Nothing's really going to change until we lobby the government to study, regulate (better yet, ELIMINATE) carcinogenic chemicals, demand that corporations value people and the planet as much as/more than profit, etc. Yeah, that's a little pie-in-the-sky, I know, but for me personally, it's worth trying for. I have a long history of feeling irrational and extreme guilt and/or responsibility, often for things that aren't even my fault... and that stops NOW. It's not my fault cancer grew in me and I'm not taking responsibility for it. I did everything "right," dammit, and was still dx'd with cancer...because as Dr. David Servan-Schreiber says, "You can't be healthy on a sick planet."
I'm going to begin by doing some Internet research to find out which cash register receipt paper is the safe/non-BPA kind, and then go to every local store I shop at regularly to ask what kind of receipt paper they use. If they use the BPA kind, I will write a letter asking them to switch to the safe kind, and write something succinct about BPA's connections to breast cancer... and I'll try and get other local women with breast cancer to sign the letter.
And then I will reward myself with a big, delicious, ice cream sundae and not feel guilty for it!!!! That's my plan.
Tuesday, July 27, 2010
But the bigger reason I haven't been blogging is because GUESS WHAT, I FEEL GREAT!!!! :) There are no cancer updates to give, because the cancer's gone and the treatments are over and I am living my life!!! Life is GOOD!!! (Or rather, my life of course has problems like everyone's does and I'm working on solutions, but the problems are thankfully not CANCER!) I've been on the Tamoxifen for almost 6 weeks now, and despite how incredibly scared I was to begin taking it because I was convinced I'd have all kinds of horrible side effects, I really don't have ANY side effects. I haven't even had a single hot flash! Well, my last period was a little weird, which is probably due to the Tamoxifen (e.g. super heavy for 2 days, then entirely gone for a day, then back, etc), but I can live with that.
I'm so grateful to be feeling so good right now. Now my tasks are to
A) Resume regular exercise (all I really do now is walk a lot - I need my yoga and trapeze back! But it's getting started that's the hardest part, now that it's not habit anymore!)
B) Figure out my post-treatment plan, in terms of check-ups/follow-ups/cancer screenings, which I'll need for the rest of my long, long life. The radiation oncologist wants me to see him in 6 months but I'm not going to, because I'm not having any radiation-related problems and I don't want to see him. I have a check-up with my medical oncologist in a couple weeks and will continue seeing her every 3 months for a while, then every 6 months, then once a year, etc., which I don't really mind. We've had a pleasant enough relationship ever since I realized she's not just chemo-obsessed and she realized I'm not a total hippie freak (e.g. we found a middle ground to meet upon). Then I have my 6-month check-up with my surgeon in September, which I'm totally looking forward to. (It would be great if K could just be my "everything" doctor!)
My upcoming visit with K was supposed to include a mammogram but I refused it. Or at least, delayed it. I'm worried about the radiation exposure from mammography, and thus will not automatically submit to the standard, recommended, annual mammogram. If I live to be 100 (and I plan to!), that means having like another SEVENTY mammograms! Geez Louise, that's way too much radiation, especially since I've already had so much, and especially because my breasts are so dense that mammography isn't even all that effective. I'm currently researching mammography more, and mammography alternatives, and compiling a long list of questions for K. At our Sept appt, we can chat about it all, and I'll decide when I would be okay with having a mammogram and how frequently after that. I'm not anti-screening... I'll have as many MRIs, ultrasounds, breast self-exams, clinical breast exams, and thermograms as she wants me to have. But when it comes to mammograms, I am being a Difficult, Non-Compliant Patient for the time being!!!! (Funny how K is my favorite doctor out of all of them, and the one I trust/listen to/go to the most, but I STILL can't simply follow her instructions/recommendations without first researching the crap out of everything myself and over-analyzing and thinking thinking thinking till my brain hurts!!!)
Thursday, July 8, 2010
I went to the dentist today, to have that temporary crown cemented on FOR THE THIRD TIME, dammit, and to get 2 fillings.
It was not pleasant. But I had them take a picture of me before they started, because I was cracking up at the set-up - they gave me a blanket for my legs because the A/C was cold, a cushy roll for behind my knees, a neck pillow, a protective bib, and purple sunglasses.
I can't decide which was worse, the novacaine and drilling, or my dentist's repeated attempts at a Cancer Conversation. He's a very nice guy and he means well, but really, I am so sick of not only having to go to so many doctor appointments in the first place (I'm being monitored or treated by a medical oncologist, radiation oncologist, surgeon, naturopath, psychotherapist, chiropractor, primary care physician, and dentist), but of having to talk about cancer with each and every one of them, whether cancer is my reason for the appointment or not. It gets so tedious.
This is what made me feel better while I was tired and woozy and dizzy from the novacaine:
And yes, I put on GOBS AND GOBS of sunblock...I looked like a demented clown!
Thursday, July 1, 2010
The Clinical Journal of Oncology, in 2005, published findings from a study on which patients benefit the most from Tamoxifen. And as it turns out, I fit that profile.
The conclusion states: "Not all ER + pts [patients with tumors sensitive to estrogen] benefited equally from tamoxifen. The largest benefits of tamoxifen were observed with high quantitative ER and low RS [recurrence score/Oncotype dx score], while smaller benefits were observed with low quantitative ER and high RS."
There's a table that shows the information -
Women with LOW Oncotype scores (less than 18) have a 7.2% absolute risk reduction from Tamoxifen (at 10 years out).
Women with INTERMEDIATE Oncotype scores (18-30) have a 17.3% absolute risk reduction.
Women with HIGH scores (over 30) only have a 1.6% absolute risk reduction.
Since my Oncotype score is a 15, at the higher end of the "low risk" category (and called "intermediate" by the National Cancer Institute) and the tumor was also highly ER+ (10 on a scale of 6 to 12), this means that I'm in the group that is likely to benefit the most from Tamoxifen. I was surprised to learn this, because I had thought that since my Oncotype score put me at such "low risk," the Tamoxifen might not even be very important. But it turns out it's the opposite - it's the women who are at high risk for recurrence that don't benefit nearly as much from the Tamox; for them, chemo is what's more important/effective.
What also helped me was a great visit with my naturopath, A, two days ago. She asked about my Tamoxifen decision, and I told her that I'm taking it, but not really feeling good about that. I told her I don't feel like taking it OR not taking it is a "good" decision; that I'm equally scared of the consequences of taking it or not taking it.
A then said that she feels really good about me taking the Tamoxifen, which was such a relief. And I surprised myself by reacting with surprise - I blurted out, "Really??" when she told me that. And I hadn't thought about it consciously, but that made me realize I had subconsciously been wondering/thinking that maybe A, being my NATUROPATH, would be disappointed that I'd chosen to take the Tamoxifen but would continue to help me on my path in spite of that. It was great to learn that she doesn't just "tolerate" my Tamoxifen decision - she supports it. She was excitedly telling me about studies that show that patients taking Tamoxifen PLUS the supplements I'm taking (some of them, anyway!) do even better than patients taking just Tamoxifen. I was happy to know that her position is "Tamoxifen and [your supplements] work really well together!", not "If you're determined to take the Tamoxifen, these supplements can at least help you counteract the evilness of it." I'm feeling much more at peace about my decision now.
I love it that A is truly integrative. She's one of the few people not trying to get me to choose either conventional medicine or alternative medicine and shun the other, and I so appreciate that. She also told me that I'm in that "narrow window" of patients who tend to be most successful in overcoming cancer, in the sense that I am not too rigid in either direction - I'm neither a person who is so dogmatic about natural health that they won't even consider the conventional therapies, nor am I a person who goes on smoking and drinking and continuing a mainstream lifestyle despite evidence of its harms....I'm open, but with a healthy skepticism, which is the most helpful way to be. All of that was so great to hear. She did add, however, that while it's great that I can look at things from all angles and see all the possibilities, it's not helpful if I get too caught up in this and can't find inner peace with my decisions because of it, etc.
Sort of related to that, A thinks I need to relax a bit. :) One suggestion was to get off the computer for a bit, stop the endless researching "and reading books like this" (she said while gesturing to a stack of cancer books in her office), "and read a novel! Do you like novels?"
Oh dear. I hadn't told her about my current stack of books, but maybe she's psychic. Because she's right - I just finished reading "Brightsided: How the Relentless Promotion of Positive Thinking Has Undermined America," by Barbara Ehrenreich, and now I'm currently reading:
"Final Exam: A Surgeon's Reflections on Mortality," by Pauline Chen
"Living Downstream: An Ecologist Looks at Cancer and the Environment," by Sandra Steingraber
"Life Inc: How the World Became a Corporation and How to Take it Back," by Douglas Rushkoff
"The Vegetarian Myth: Food, Justice, and Sustainability," by Lierre Keith
So, yeah. Anyone have suggestions for relaxing novels I should be reading? ;)
Monday, June 28, 2010
Two nights ago, I was up till the wee hours of the morning, deconstructing my pathology report, MRI report, and mammography reports, Googling every word I did not understand. I wanted a clearer picture of what my recurrence risk is. I’m mainly skeptical of the Tamoxifen because I don’t believe my risk of recurrence is high enough to warrant it. I feel so sure that I won’t get cancer again no matter WHAT, so why deal with the risks of Tamoxifen?
I guess two nights ago I was taking the opposite approach – trying to find information that would convince me my recurrence risk IS high enough to make the Tamoxifen worth it. Why am I so sure I can’t possibly have a recurrence? I was “so sure” I couldn’t possibly have cancer in the first place.
So here are all the facts as I know them.
I had two types of breast cancer at once:
A mucinous tumor, Stage 1, Grade 2 – 1.5 cm at its greatest diameter. Mucinous is a "good" kind of cancer to have if you have to have cancer, because it's so slow-growing/non-agressive. But it's really strange that I had it at age 30, when it's most commonly found in post-menopausal women over 60. In fact, I was the youngest patient my surgeon has had with mucinous cancer and she only sees about 5 patients with it each year. So it's hard to say what all that means. And the fact that it was Grade 2 means it wasn't the slowest of the slow.
An area of DCIS - approximately 3 cm. All DCIS is Stage 0, but mine was also Grade 2. Ductal Carcinoma In Situ is non-invasive cancer that does not (or at least, has not YET) spread beyond the duct that it is in. Some DCIS will never become invasive cancer, but doctors can't yet accurately predict which women's DCIS will become invasive and which won't, so DCIS is often overtreated because the risks of not treating it are just too high. Having DCIS increases one's risk of developing invasive cancer but it's hard to say by how much.
My Scarff-Bloom Richardson (SBR) score was a 6, on a scale of 3 to 9. A score of 3 to 5 = low grade, 6 or 7 = intermediate grade, and 8 or 9 = high grade. The SBR score takes into account 3 things: rate of cell division, percentage of cancer comprised of tubular structures, and cell changes/how similar the cancer cells are to normal cells. So, while less than 10% of my cancer was tubular (the higher percentage, the better), and the cells showed a "moderate" increase in size and variation (as compared to normal cells), cell division was slow. These 3 factors combined made the cancer "intermediate grade." That puts me in an annoying gray zone.
Something else that puts me in the annoying gray zone is my Oncotype score of 15. Oncotype dx is a test that analyzes 21 different genes from your tumor and uses that information to predict how likely you are to have a recurrence in the next 10 years. The creators of the test say that any score under 18 = "low risk," so low that you don't need chemo and/or chemo would be ineffective or not effective enough to make the risks worth the benefit. My score of 15 translates to a 10% risk of relapse in the next ten years IF I TAKE 5 YEARS OF TAMOXIFEN, otherwise the risk is higher. (Oncotype dx does not predict what your recurrence risk is if you take no Tamoxifen.) However, the National Cancer Institute disagrees with the Oncotype people and says that only scores below 11 are considered low risk, and that my score of 15 would actually put me in the intermediate risk category. In fact, that clinical trial that I signed up for was designed specifically to study those of us in the intermediate category, to see if chemo + Tamoxifen is a better treatment than just Tamoxifen. I had a 50/50 chance of being randomly chosen for the chemo category.
To me, what all of this says is I might be low risk, I might be intermediate risk, it depends who you ask, and it's kind of a toss-up. My risk of recurrence EVEN IF I TAKE ALL THE TAMOXIFEN is 10%, which is greater than my risk of having had cancer in the first place.
I also have fibrocystic "disease" (it's not really) with adenosis, stromal fibrosis, and atypical ductal hyperplasia. (A mouthful, geez!) This is a non-cancerous condition, but it's a higher risk marker. It's "pre-DCIS," ridiculous as that sounds. Pre-pre-invasive cancer. Hyperplasia = overproduction of cells, atypical = they're abnormal in some way, ductal = it's the cells in my milk ducts that we're talking about. Adenosis = those abnormal cells are also in my breast's lobules. I'm still not quite sure what stromal fibrosis is, but it's something similar - breast cells doing stuff they're not really supposed to. Lots of info here .
I have heterogeneously dense breasts. The denser one's breasts are, the higher one's risk of breast cancer. Check out Am I Dense for info . There's a lot of buzz right now about how dense breasts are an underappreciated risk marker for breast cancer...that is, the medical world seems to have known for a long time that dense breasts are a risk factor and that mammograms are often ineffective with dense breasts, but few doctors A) tell their patients about their breast density or B) use screening methods other than mammograms. I have to research this more, but anyway, I do have very dense breasts (about a 3 on a scale of 1-4, according to the info found in my MRI/mammo/path reports), and the doctors did tell me that, and that it's a higher risk marker for cancer.
I'm not exactly sure what I think of all of this information together means, but I had to put it all together like that so I'm rightfully focused on what's going on in MY breasts, not those of the women whose stories I stupidly keep reading on the Internet. There are so many stories at both extremes - women who say, "OH, the oncologist told me to take Tamoxifen but I knew I didn't need it and threw it out and just take green tea instead," as well as women who say that their cancer was so tiny/early their oncologist didn't even recommend chemo and just put them on Tamoxifen, but even WITH Tamoxifen, they had a recurrence 2 years later and are now at Stage IV. That woman said, to those of us who are all freaking out about not wanting Tamoxifen, "Tamoxifen side effects are better than Stage IV cancer." That has stuck in my brain.
But I can't let these other women's stories carry too much weight for me, because everyone's cancer is SO DIFFERENT. Before I was dx'd, I was so clueless about EVERYTHING - I didn't know the difference between radiation and chemo (I kinda thought they were the same thing and radiation's what made you lose your hair); and I never even distinguished between the nipple and areola, nevermind knew anything about milk ducts and lobules; and I didn't know that there was so much variation amongst the types of breast cancer. I thought breast cancer was just breast cancer.
It doesn't help me to compare my own situation to other women's and second-guess my decisions based on theirs, because I AM THE ONLY ONE who was a 30-year-old woman with a stage 1 grade 2 mucinous tumor, grade 2 DCIS, heterogeneously dense breasts, and atypical ductal hyperplasia with adenosis and stomal fibrosis.
I wonder if I will ever be at peace with my Tamoxifen decision, instead of continuing to anxiously analyze it from a million different angles. Right now I'm feeling like I have a greater understanding that yes, I DO have high(er) risk factors that might just make the Tamoxifen worth it. There's a lot of activity going on in my breasts that the Tamoxifen will hopefully calm down.
Wednesday, June 23, 2010
My check-up with the radiation oncologist went really well, mostly because HE was out of the office that day and had a female rad onc filling in for him, whew!! So much easier for me. And she was super impressed with my healing, said everything's great, and if it weren't for the incision scar, she wouldn't even be able to tell which breast was treated. WOOHOO! (There's still swelling, which had worried me - shouldn't a breast that's had tissue removed 3 times be smaller, not bigger?? - but she said it's normal and it may just take a few more months to go down. So, I'm cool with that!)
I'm also on day 7 of Tamoxifen with no problems. Taking the first one was the hardest - I cried about it. I've heard that it takes a few weeks for side effects to show up, if you're going to have side effects at all... and maybe I'm one of the lucky people who won't! Although, I think hot flashes will pretty much be a given. We'll see.
So that's why there haven't been updates - I'm doing really well. My "struggle" now is with how to get back to "normal life" - new normal, whatever. Cancer treatment was intense and foregrounded in my life for 6 months, but now that's over. I don't want to be so focused on it. But it's weird, I still read the breast cancer message boards several times a day, totally just out of habit, because it's what I did for months. I don't want to be that immersed in Cancer Land, and I don't want to be blogging about stuff in a Cancer Blog so frequently... but at the same time, it's not like everything's just "over" and I can throw a party and get on with my life. Not when I'm taking a DAILY anti-cancer pill, and will be having regular check-ups with various doctors for years (if not forever?!), and mammograms and MRIs and all of that. And I have made, and continue to make, big changes in my life with the goal of making sure the cancer stays in remission for the rest of my life. (Add the usual disclaimer about how I know nothing can guarantee that, blah blah). Changes such as improving my diet (it's an on-going process) in specifically anti-cancer ways, being very conscious of my work life, going to therapy weekly to process emotions and past traumas, detaching from stressful relationships that no longer serve me, etc. It's all good stuff, stuff that would be good for its own sake, not just as "recurrence prevention."
I'm not sure what that means for this blog - that cancer is much, much less of a focus of my life now that treatment is over, but not something I can leave behind/ignore entirely. I'm trying to find the balance. I'm not sure if I will end up only sporadically coming to post here if/when I'm having issues with cancer stuff (e.g. Tamoxifen side effects, or doctor appointments that I need to ramble about), or if I should try and turn this into a more general blog about my life, and write about lots of stuff that's not cancer-related. But it IS called Britta's Boob Blog, not Britta's All-Encompassing Blog. Hmm.
See, this is why I haven't been blogging - I'm just not sure how to do it right now! I feel like I should be "updating regularly" as "usual," but... I don't want to write about cancer stuff when I'm not thinking about/dealing with cancer stuff just for the sake of having new content for my blog... you know?
Tuesday, June 8, 2010
The parade was about to start in a few minutes, so we were both kind of rushing around trying to get ready for it, and stopped very briefly to do the whole "Hi, how are you" thing. She asked what's next for treatment, and I told her I'm starting Tamoxifen soon, which I'm really not looking forward to. Then I think she asked if there are bad side effects, and I said something like, "Yeah, and the prescription is for FIVE YEARS... I doubt I'll last that long!!" I totally meant "I doubt I'll be able to handle taking the Tamoxifen for that long and will stop taking it before the 5 years is up," but I worded it ALL wrong because we were in a rush and she must have thought I meant that I'm expecting to be dead in 5 years, because she immediately gave me the biggest hug. Oh noooo! I hastily added some random babble about "No, no, my prognosis is great!" but I don't think that made sense either and we both had to rush off anyway.
Now I'm feeling like a jerk for unintentionally making someone think I'm dying!!! Reality is, I am soooo healthy and full of life right now and Tamoxifen or NO Tamoxifen, I'm not going to DIE from breast cancer.
Ironically, I unthinkingly wore this T-shirt later in the day -
To me it's sort of a statement against the cancer - I love how the words go RIGHT across my breasts. :)
Now I'm wondering, should I email this woman to clear up the miscommunication and assure her I'm not dying?!? I don't want her to think I am! But actually emailing her about it seems even more awkward and weird! "Hi, I'm sorry, I'm really not dying!" Oh, geez...
Sunday, June 6, 2010
I picked up the prescription, but it's still sitting in my car - I can't even bring myself to bring it in the house yet, nevermind my body. I got permission from my onc to wait until June 17 to start taking it, which is the day after my post-radiation thermogram. I figured if I was already taking the Tamox at the time of the post-radiation thermogram, we wouldn't know if the results of it were due to the absence of radiation or the presence of Tamox. But maybe I'm just thinking up stall tactics.
I cried over the Tamox for a while on Friday, but once I stopped thinking about it and talking about it and totally blocked it from mind, I returned to my HAPPY, HAPPY LIFE.
This is how I spent my weekend -
Partying it up, literally dancing in the streets, with all "my people." I feel so happy, healthy, strong, ALIVE!!! I don't want the Tamoxifen to ruin this!!!
I think I'm developing a Tamoxifen phobia, and probably it won't be nearly as bad as I'm fearing. I've decided to try it for 6 months. If the side effects are unbearable and not decreasing, I'll stop taking it.
The main problem is that I'm not comfortable with my decision. I'm EQUALLY afraid of the consequences of taking the Tamoxifen, as I am of the consequences of not taking it. I have heard so much conflicting information about Tamox that it's overwhelming. For every story of a woman who went through Hell with Tamox and found health only after she quit it in favor of succesful alternative treatments, there is a story of a woman who said no thanks to Tamox and did alternative treatments and got a nasty recurrence of cancer. There are people I trust who think it's extremely important for me to take it, and people I trust who think I'm putting myself in danger by taking it. Bad things can happen if I take it, and bad things can happen if I don't. And I really, really JUST DON'T KNOW what would be right for me.
So I'm just going to try it. I'm not making this decision because I genuinely feel it's the best one, but because I'm so freakin tired of endlessly reading, researching, questioning, weighing my options, ad nauseum and needed to JUST CHOOSE. I'm at the point where I feel like the paralysis of indecision was worse than either choice could be.
Saturday, June 5, 2010
TODAY WAS THE DAY! The first mocha I'd had in 5 months! S and I went to Coffee Country at 8 am, and I giddily ordered my double iced mocha with whipped cream.
It was so beautiful and amazing, the most delicious mocha ever. I spent a good 40 minutes drinking it, savoring every sip. So heavenly. I'd been looking forward to this mocha for weeks...the anticipation made it even better.
And I'm happily surprised to discover that I'm not even craving another. I thoroughly enjoyed the one I had, but now I'm looking forward to how amazing my 2nd annual mocha is going to taste in January, when I've waited 7 months for it!
I was worried that the person making my mocha today would be a newly-hired employee in training, and it wouldn't taste right... but thankfully, my mocha was made by the owner of Coffee Country herself, and she makes damn good mochas. I thanked her at least 3 times and explained that it was my first mocha since January, and she smiled, but still, I don't think she understood the enormity of the event to me.
I'm so grateful. Isn't it so beautiful? Look how it glows in the sunbeam -
Wednesday, June 2, 2010
i'm feeling scared of the unknown, and resistant, and really ANGRY. not at my oncologist, just the situation.
please don't tell me to take the tamoxifen and don't tell me not to take it. i don't want opinions and advice about that, because i'm overwhelmed by too much already. i'm just venting, because this is the place where i can do that.
In a nutshell: MY BODY IS AWESOME!!! :)
I'm still waiting for them to provide me with a written interpretation of the results, because right now I only have the printout of the report, which says things like "CI 3.9" (I made that up), and this doctor tells me, "That's really good!!", but that's not helpful if I've already forgotten what the CI stands for or what the 3.9 is on a scale of, you know??
Anyway, what she told me, basically, is that nearly all of the tested parts of my body are functioning very well. My gut/digestive system ("deep immunity") is great, although my lymphatic system ("surface immunity") was stressed during radiation. That's not really a bad thing - it was not shut down or malfunctioning, it was simply working really hard and thus needs a boost, which makes SENSE, given the context. My body's vitality and "chaos index" (i.e. ability to respond appropriately to stressors) are great. I don't fully understand this part, but something else the CRT tested is "tumor terrain" (?), something about checking for areas where you may be in danger of abnormal cell growth, and my scores were GOOD in both thermograms! I'm in the normal/healthy range! The functioning of my breasts was good, too, and there was only a SLIGHT difference (drop) during radiation!
Apparently, when my naturopath first saw the comparison between the two thermograms and saw that much of my body was in "hyperdrive" at the time of the second CRT (during radiation), she got a bit worried...but she told me she doesn't have much experience interpreting CRTs, and that's why I had a separate appt with another doctor today, who DOES have experience with CRT interpretation. And her explanation was that yes, my body was working extra hard to deal with the unexpected assault of radiation, but in a GOOD way - an organized and appropriate way, as opposed to just shutting down or getting confused.
LOL, I'm very inarticulate about it all and don't know the correct terms for everything, but you get the gist! I'm trying to think of an analogy. Okay. If you're running around a track and suddenly there's a hurdle in front of you, you JUMP OVER IT and keep running. Jumping over the hurdle takes work but it's the correct response. WRONG response would be to, say, stop running, lie down on the track and cry... or to hop around the hurdle on one foot three and a half times while singing Twinkle Twinkle Little Star.
What the CRT showed was that, hell yeah, radiation was a hurdle for my body and responding to it took a lot of work, but my healthy body DID jump over that hurdle and keep on running. It did not lie down and cry, nor did it freak out and go apeshit!
I LLLOOOOVVEE my super smart, hard-working, healthy body! My body knows what it's doing! And I'm gonna keep sending it love and feeding it healthy things and moving it in ways that it likes and giving it all the rest it needs so it can JUST KEEP DOING ITS THING!!
Tuesday, June 1, 2010
AND THEY ARE FREAKIN DISGUSTING. Okay, so I haven't tried one yet. But I OPENED THE CAN! People EAT these?! Do you have to...like...skin them or something first?? The package says they are "delicious meaty portions cleaned and scaled." Do you not have to cook sardines that come in a can? They're already cooked? There are no cooking instructions on the package, so you really just PICK ONE UP AND EAT IT??
I have to Google "eating sardines," apparently. Have any of you eaten a sardine? What's it like? Oh, geez. The stupid can doesn't close now that I've opened it, so I have to eat these things before they stink up the house. Right now the can is sitting on a shelf near the computer. I'm just looking at it. From a distance.
UPDATE: Okay, now it's the following afternoon. After lots of reading about sardines via Google last night, and staring skeptically at the sardines, I did try them!! I discovered that while they taste really good to me - similar to tuna, maybe a little saltier - the look and feel is what grosses me out. The blotchy browns and grays, the weird stringy things inside if you pick at them too much, the itty bitty SPINES, ugh... But they are so freakin healthy I want to like them and eat them! I got some great advice and tips from my Facebook friends on how to make them more appetizing, and, SUCCESS! I just had a delicious lunch of a sardine sandwich on whole wheat sourdough bread. I mashed the sardines up with Goddess dressing (contains turmeric and black pepper - also very anti-cancer) and nutritional yeast, and pretended like it was a tuna sandwich, and it was awesome.
I'm now officially recommending sardines. :)
Monday, May 31, 2010
"Okay, Gabrielle. We're going to put this mask over your nose now." She got my name wrong. [Gabrielle is my middle name]. The mask was put over my nose. "Take deep breaths." I did. for a minute, a strawberry-cherry vapor filled my nostrils and throat. I breathed slowly and tryed [sic] to relax like they had told me. Then a new substance filled my lungs. They told me to let them know when I got a buzz on my forehead. After a few seconds, I closed my eyes. It hurt to keep them open. I quickly re-opened them, though, so they wouldn't think I had already gone under. I stared straight up, at the big blue light above me. It seemed to get farther away, and my ears started to ring. It was a scary feeling, and the only way I showed the fear was my eyes. They widened and darted furiously around. I felt trapped. I closed my eyes briefly, blinking longer each time. I pointed to my forehead, indicating the 'buzz.' I closed my eyes, and everything changed. I no longer saw, heard, or was aware of the operating room or doctors. I saw nothing but blue, red, and yellow dots forming triangles so close together that it was just a greyish mass. I could sense a very cold, robot-like voice near me. "Breath. [sic]. Deep. Breathe. Deep." Instead of getting dizzy and spinning in circles [??], there were triangles. Big triangles, made of the colored dots. I watched them as they traced the shape, beeping mechanically, then they shrunk to about one fourth of the size, all smushed into one shape. The beeping became louder, and almost audible [??], but more like sensed, the letters RGM were repeated over and over in the mechanical voice, blaring inside my head. The G espesially [sic] was emphasized, and I tryed [sic] to figure out why. Since I focused on the one letter, one of the 3 points of the triangle, the triangle became one single black dot, throbbing at great speed, beeping louder than ever. The coldness, harshness, of it all was almost unbearible [sic], and I acutely remember thinking: 'I am under anesthesia. I can tell that I am, and I'm not supposed to remember it. I hear nothing, see nothing, feel nothing psyically [sic], yet I am aware that I am unconscious.' It was such a weird feeling, and I hoped desperately the feeling would leave soon.
That is the very last thing I remember before I woke up in the recovery room.
GEEZ!! That was a scary (and bizarre as hell!) experience that lasted for several minutes. I have NO IDEA what's up with the "RGM" and beeping triangles weirdness...and my writing is rather incoherent at times, making me wonder when, exactly, I wrote this - in the freakin recovery room?? Ha!!
Considering that was my one and only experience with anesthesia, I'm surprised I let myself go through it again this winter for breast surgery! Or rather, I'm surprised I wasn't the least bit scared of it. To the contrary - after my lumpectomy, K told my family I went under "giggling like a little girl." And I don't AT ALL remember the process of losing consciousness. All I remember is: K asked what kind of music I wanted to listen to, I thought that was hilarious and told her, "I'm not going to be awake to hear music!", and my giggling made the anesthesiologist exclaim in surprise, "I haven't even given her anything yet!" I vaguely remember K's smiling eyes, despite her face being cluttered with the necessary protective gear (that ridiculous poofy cap and face shield), and that's IT. Next thing I knew, I was waking up in recovery. I think it really helped to have IV anesthesia instead of that scary mask with the "strawberry-cherry vapor" - ugh!! I think they used that (when I was 15) because I was terrified of needles, but jesus christ, I would have preferred the temporary pain of a needle insertion, if it meant not spending several minutes aware of the process of going unconscious. It was like drowning, or like being blind and deaf and paralyzed all at once. SO SCARY.
It's so strange that surgery to get a few teeth pulled was scarier than surgery to have a cancerous tumor removed from my body. And it's so strange that for a few weeks in December-ish while I was waiting for surgery, my sprained pinky finger was way more painful, bothersome, and life-interrupting than the CANCEROUS TUMOR was. I never had a single symptom of the cancer...no way of knowing it was there, other than doctors telling me so. This is still so weird when I think about it. It's the only time I've had to undergo extensive, intense, uncomfortable medical treatments for a health problem that was simultaneously the worst health problem I've ever had and one I did not feel at all. It's not like having a really painful sore throat, getting dx'd with strep, taking the antibiotics, and then feeling the pain go away and knowing you're better. It's not like having coughing fits that kept me up at night for months, getting dx'd with asthma, treating the asthma with a combination of inhalers and alternative medicine, then stopping coughing and sleeping soundly once more. I didn't know I had cancer, and couldn't feel the cancer, and then spent a month and a half getting irradiated, which I also could not feel, and now I'm cancer-free, but it all feels so unreal, like I either possibly still have cancer or never had it at all, because either way, I CAN'T TELL! Does that make sense?? It sounds awful to say this, but I almost wish the cancer had been accompanied by at least one symptom*, so that the cancer treatments could have eliminated the symptom, and I'd thus have something to hold on to - I could believe both the reality of the cancer in my body and its elimination. Because right now it's feeling like... 'cancer? Really? REALLY?!'
*Edited to add: the lump was a symptom, duh. And I could feel it when I poked at my breast, and yeah, surgery removed it...so THAT was a clear distinction between cancer's presence and absence which I could understand. But the little lump never hurt me/bothered me so it was still hard to understand in that regard, and it was even harder to understand the whole invisible-radiation-killing-invisible-cancer-that-might-not-even-be-there thing.
Sunday, May 30, 2010
I have had a WONDERFUL weekend, and a very ANTI-CANCER weekend! :)
I've been re-reading Dr. David Servan-Schrieber's Anti-Cancer. I think I should read this book on a regular basis, because it's so uplifting and inspiring. Every time I read even a little part of it, my determination to make my body's terrain totally unwelcoming to cancer is reaffirmed and increased and I get a little more excited by how truly possible this IS. Also, re-reading it reminds me of details I had forgotten.
Dr. David says that these are the good things to be doing:
* Eating a healthy anti-cancer diet
What I ate (just yesterday and today) included the following:
-2 bags of frozen cauliflower (contains sulforaphane and indole-3-carbinols - anticancer molecules)
-1 bag of frozen sweet potato ("a study that tracked breast cancer patients for six years showed that those who consumed the most foods rich in carotenoids lived longer than those who consumed less." p. 136)
-1 bag of frozen strawberries (ellagic acid and polyphenols stimulate mechanisms of elimination of carcinogens)
-1 clove garlic (sulfur compounds promote apoptosis - cell death - in breast cancer)
-1 can of grapefruit (anti-inflammatory flavonoids)
-a few cups of nettles infusion (nourishes every system of the body)
-1/3 of a bar of 85% dark chocolate (antioxidants, proanthocyanidins, and polyphenols slow the growth of cancer cells and limit angiogenesis.)
And I had all of the following supplements each day:
-3 dropperfuls of green tea extract (facilitates death of cancer cells, rich in polyphenols)
-4 Juice Plus capsules (concentrated fruits & veggies)
-1 Turmeric capsule ("the most powerful natural anti-inflammatory identified today." p. 134. also stimulates apoptosis in cancer cells)
-20 mg melatonin (slows breast cancer growth by reducing linoleic acid)
-2000 IU vitamin D (stimulates apoptosis in cancer cells, increases healthy cells)
-3 digestive enzymes capsules (so my body can actually assimilate all the good stuff I'm eating!)
-2 fish oil/omega-3 capsules (reduces inflammation, reduces cancer cell growth)
-2 T ground flax seeds (phytoestrogens, flushes estrogen out of the body, acts like Tamoxifen)
* Avoiding products containing industrial chemicals whenever possible
This weekend, like every day, I used all-natural, paraben-free shampoo, soap, deodorant, and toothpaste. Today I bought and used Badger Balm sunblock, the 2nd best/healthiest sunblock, according to the Environmental Working Group's 2010 report. I drank filtered water out of glass and ceramic containers.
* 20-30 mins of physical activity each day, minimum
I did some pull-ups, and I walked for an hour yesterday and another hour today. I did not use my car at ALL, and thus helped take care of the Earth as well as myself.
* Sunlight for 20 mins per day (vitamin D)
I spent at least 2 hours walking in the sun, and 90 minutes at the river with friends. I got plenty of vitamin D and then put on sunblock so I wouldn't get burned!
* Regularly practicing a method of self-centering and relaxation
I spent time in nature, wandering around the cemetery and taking photos of my favorite statues, like this:
* Accepting yourself and your emotions, and getting support from family and friends
I journaled, and processed emotions in long emails to a friend. I spent a lot of GREAT time with friends this weekend... we had brunch, and went swimming at the rock river. I said thank you prayers, and slept a lot, and spent the first hour that I was awake this morning just lying in bed and thinking happy thoughts.
And I was SO SO HAPPY with my hair!!! :)
Friday, May 28, 2010
I got a haircut today. It was very freeing! I did it to donate my hair to Matter of Trust, the organization that uses human and pet hair to make mats and booms that help clean up the oil spill. I've been feeling so grief-stricken and helpless in response to the oil spill, and was glad to discover that I could at least donate my hair.
I've never had hair this short before. I gave the stylist free reign to do whatever she wanted with my hair, with my only criteria being that I wanted to donate as much hair as possible without looking like I'd been through chemo. :) While she was cutting my hair, I sent love and metta to the dolphins, whales, seaweed, shrimp, plankton, sharks, turtles, manatees, lobsters, scallops, horseshoe crabs, sand crabs, mussels, swordfish, coral reefs...
Thursday, May 20, 2010
I slept in, then had a yummy breakfast of cottage cheese, Green Goddess juice/smoothie, and coffee, while watching an episode of Gray's Anatomy.
I put on my happy, rainbow-striped tank top and shorts, because it was EIGHTY DEGREES AND SUNNY :D, and went downtown.
I had a wonderfully productive therapy session.
I went to the post office, and found a nice paycheck in my box.
When I came out of the post office, there was my good friend B, right there on the sidewalk, whom I hadn't hang out with in over two months and had missed so much. And it turns out her afternoon work was canceled, so we'd have time to hang out! My friend A waved to me from down the sidewalk while B and I were walking.
I got some great exercise walking all around town doing errands. I sold another stack of DVDs to the used DVD store, enough to pay for another month and a half of Netflix.
I went to the Co op and got a delicious nut shake for lunch (hazelnuts, banana, maple syrup, rice milk), and ran into friends to chat with.
I got back to my car only one minute after my parking expired and had no ticket on the windshield, whew!
I went home and did some work on the meeting minutes, which went surprisingly well.
I walked back downtown, and spent the walk chatting on the phone with a family I used to work with and hadn't seen for a while, to see how they're doing and they sounded great and told me all about the funny circus show they went to yesterday.
Also while walking, I left a voicemail for my friend SS, in an attempt to make plans to hang out soon.
I met B at Coffee Country and we had yummy iced coffee drinks and sat at a table outside and caught up on everything! We saw and waved to our friend D and her daughter R as they passed by.
B walked me partway home then continued on down the street to the circus school, while I dashed home to throw on a unitard. Then I went to the circus school, too. There were so many friendly faces to say hello to.
I had a wonderful time in the 90-min trapeze class that B and SR taught! It was a small class, fun and low-key. I noticed differences in my body (e.g. my left chest and armpit feel really tight, because of scar tissue and radiation), but going back to trapeze wasn't difficult like I had worried it would be and my body felt really good back on the bar.
I came home, and had a great chat with C (my friend/housemate!) while cooking my dinner. I made well-boiled/mushed broccoli and mixed it with cream of rice cereal, goat cheese, and coconut oil, which gave me a meal that my teeth could handle AND included vegetables, grains, fat, and protein, all at once.
I watched another episode of Gray's Anatomy while eating my dinner, which was surprisingly tasty, and a square of 85% dark chocolate.
Now I will try and take my melatonin and go to sleep before midnight, so I can wake up early for the Airport Advisory Committee meeting that I'm the minute-taker for.
And I will have happy dreams, at the end of this happy day. :) Today was a perfect blend of everything - social time, alone time, exercise, outdoor time (gorgeous weather!), self-care (therapy), nourishing food, a little bit of work, and a true sense of community. I love it that I not only spent planned time with friends, but bumped into so many other friends while out and about downtown. That's why I love living here - there are friends around every corner. I used to think that community like this only existed on TV shows!
Tuesday, May 18, 2010
Last year when my tooth cracked and I went for 3 or 4 weeks without eating solid food (e.g. used my immersion blender on all of the foods I ate), I unintentionally lost over 10 pounds and that's not good. I'm a healthy weight now and will be underweight if I lose, and I don't want or need to lose weight. I need to have a plan for how to do this better than last time. Any ideas? I am looking for foods that do not need to be chewed, and don't have sugar, meat, soy, artificial ingredients, or a lot of processing. And they also need to have enough protein and fat to help me maintain a healthy weight.
My list so far:
Fruits & Veg: applesauce, mashed avocados, mashed bananas, smoothies, mashed sweet potatoes, those Indian sauces/veggies/meals in a box
Protein: refried beans, hummus (?? does this have protein?), yogurt, PB, scrambled eggs, some kind of salmon that's really soft?
Grains: oatmeal, grits, cream of wheat...?
Etc: chia seeds added to things provide lots of nutrients, coconut oil adds fat, soup combines everything, nettles and chickweed tea are full of nutrients...
What else is there? How do I do this?
Monday, May 17, 2010
My fatigue has decreased - I can stay up late again, and sometimes I now only sleep for 7.5 or 8 hours, instead of 9! This weekend, I was exhausted, but that was due to working 27 hours in 3 days. (Which I know is normal to so many people, but not to ME, at this point in my life.) So of COURSE I was tired from that! But I could definitely feel that it was the 'overworked' fatigue, which is familiar to me, not the heavy fatigue from radiation. I can say with confidence that I'm healing very well from the radiation! My skin is now tan instead of pink/burned, and rather splotchy because it's peeling. I'm still using lots of aloe. And it doesn't hurt!
I worked too much this weekend. I just started this new job that's 19 hours one weekend per month, and in theory, this is great for me, because my other work is usually only on weekdays so I am not overtaxed by this set-up. I like the work, and I like being able to earn a big chunk of money in just one weekend and then having all of my other weekends free! But this weekend I took on an extra assignment from my other job, too, and also spent my "break" helping my former roommate clean our former apartment to increase the chances of my former landlord giving me at least some of my security deposit money back. So, combined, it was TOO MUCH for one weekend!!! But the fact that I was even able to do it showed me that I really have recovered from radiation, woohoo!
This morning, I slept in, and then, to reward myself for getting through my marathon weekend of work, I took myself out for brunch! I went ALL OUT! I had a spinach/onion/mushroom/cheese omelet with sour cream and olives, hash browns, sunflower wheat toast, a short stack of blueberry pancakes with butter and VT maple syrup, and coffee! The waitress thought I was done ordering after I said the omelet part and started to turn to leave, but I kept going with, "And I will also have..." She grinned and said, "You go, girl!!" at the end of my list, haha!! Okay, no, I did not really eat all of that food. About a third of it is in a box in the fridge right now. And I've been too full to eat a single thing since that brunch 8 hours ago! But oh it was so fun! (I think my body needs tons of food/nutrients right now to fuel the healing process. :))
I have to say, I'm in a strange place right now and don't know how to describe it. I thought that when cancer treatments were over, it would be this clearly-defined event, like, "WHEW, glad that's over, now I can go back to my life!" But it doesn't feel like that at all. Radiation's over, and that's a HUGE milestone which I'm thrilled about, but is that all it takes to automatically make me go from "cancer patient" to "cancer survivor"? Am I now "cancer-free"? But who's to say I wasn't "cancer-free" right after surgery, or after my 9th radiation treatment, or my 23rd? It's all quite confusing. I'm glad that I can used the past tense now and say "I had breast cancer," but at the same time, it's the same phrase that a person who had breast cancer 17 years ago can say, whereas it feels like just 5 minutes ago that I had breast cancer. It doesn't feel like it's "over," or at least, not as clearly or as much as I THOUGHT it would at this point. Partly it's because my datebook is still cluttered with doctor appointments. I'm seeing my naturopath on Friday, then my oncologist will put me on Tamoxifen the first week of June, and I have a thermogram a couple weeks after that, followed by a check-up with the radiation oncologist (and Lulu ;)) a week or so after that, and a check-up with my surgeon in early Sept (probably with more imaging tests?), and probably at least one more visit with my oncologist before then, etc. So I really don't have this "YAY, IT'S OVER! LET'S HAVE A PARTY!" feeling.
On the other hand, I AM returning to my "normal life" in many ways now (or rather, a new normal), and I looooove having the whole month of May to not have to go to the cancer center at ALL. I think it's the first time in 6 months that I've had more than a couple weeks without needing to go to the hospital for something. Wow, that blows my mind. I mean, the fact that I spent HALF A YEAR being a regular at the hospital. Really?? Ultrasound, biopsy, mammogram, MRI, chest X-ray, blood work, meeting with surgeon, more mammogram, surgery, surgery, check-up with surgeon, thermogram, consult with oncologist, consult with radiation oncologist, surgery, check-up with surgeon, 33 radiation treatments, more blood draws, more thermography, more oncology. All of that for 6 straight months. It seems so...not like my life!!
Six months of having my breast poked, squished, cut, sewn, injected with things, stuck with wires, compressed between mammography plates, looked at, discussed, photographed, tattooed, irradiated, washed, stuck with stickers, drawn on with Sharpies, scanned, analyzed, by dozens of strangers. Thank the gods THAT IS OVER!!! (Mostly.)
But, Tamoxifen looms. It's not so much that I'm "done with treatment," it's that I'm done with the local treatment and am moving on to the systemic treatment. That is, surgery and radiation were treatments done only to my breast. This daily Tamoxifen pill is going to effect my entire system/body. I don't yet know what this will be like and I'm getting nervous about it. It's possible that I won't experience any side effects at all, and I will just feel like myself and everything will be great! But this is unlikely. The other extreme is that I could basically feel like I'm in menopause, with hot flashes, nausea & vomiting, vaginal problems, fatigue, depression, headaches, etc. This, too, is unlikely. But there is no way to know except to just start taking the stupid daily Tamoxifen pill and see what happens. Probably I won't be totally miserable or totally fine; it will be somewhere in the middle. The not knowing is driving me crazy....when I let myself think about it. Mostly, I haven't been! I've been working, unpacking and settling into my new home (apartment shared with friends!), reading lots of library books, playing on the Internet, walking in the sunshine, drinking tons of coffeeshop coffee, spending time with friends, watching Buffy, journaling, making Michfest plans, and all of that good stuff. I don't WANT to be researching Tamoxifen and compiling a list of questions to ask my oncologist about it in preparation for our June appointment...the cancer books are collecting dust on my bookshelf while I instead read interesting and enjoyable books. Somehow I need to keep working on finding a balance, neither obsessing over the cancer stuff nor ignoring it. Maybe one reason I haven't been blogging much is 'cause I'd rather just ignore it right now. I want to just spend this one month without having to focus on the cancer treatments, you know? Radiation's over, and Tamoxifen hasn't begun. Why can't it just stay May forever?
Monday, May 10, 2010
I'm having trouble dealing with the fatigue. It makes me frustrated and impatient. I've always been a night owl - for years, my natural sleeping schedule has been 2 am to 10 am. That is, if I don't have work that dictates my hours of sleep, my body naturally reverts to its 2-10 am cycle. I was used to late-night alertness and slow mornings, whereas now, I'm more like a toddler - ready to crash by 8 pm, energetic and productive for several hours in the morning, then cranky without an afternoon nap and it's all downhill till 8 pm again. I somehow keep forgetting that I won't be able to accomplish anything more than dinner-and-a-DVD after approximately 7 pm - I have the best of intentions to do a bunch of tasks in the evenings, like return phone calls, fill out forms, work on the meeting minutes, map out my schedule, or whatever - and then I end up feeling like such a slug and can't do any of it and it makes me mad.
I'm also frustrated because I have several friends whom I used to see on a regular basis and now haven't spent time with in such a long time, and I want to catch up with everyone, and I want to have the energy to do it NOW, but I don't. :( I keep overestimating my energy. It's hard, because sometimes the fatigue hits so fast - I'll be going along just fine and then all of a sudden feel like I just cannot walk another step, or like I have to go home RIGHT NOW from wherever I am. I need to get better somehow at recognizing the fatigue sooner so it doesn't blast me like that. Or maybe I need to schedule myself rest times and stick to those, even if a scheduled rest time comes and I don't feel like resting/don't think I need it.
I got a chiropractic adjustment today for the first time in approximately a month and a half, and my chiro said that my spine has actually changed since my last adjustment, most likely due to my decreased activity level. e.g. I used to do trapeze and yoga once a week each, and now I haven't done yoga in 2 months and have only trapezed twice in the past 3 months. And I can FEEL it. :( I know I need to get back to exercising because it will be good for me in so many ways... but it's feeling like a catch-22 - exercise will give me energy, but I'm too tired to exercise. :P I've been walking an avg of 30 mins/day, but that's not enough.
Now it's 8 pm and I'm trying to decide between dinner or a shower, because I don't think I can handle both. AARRGGHHHH. SO ANNOYING. But I know that this fatigue is temporary and I will soon feel better and better. And I need to remember, too, that if temporary fatigue is the worst of my problems right now, then HALLELUJAH, because I am so blessed to be as healthy as I am. I freakin SURVIVED CANCER!! I am alive and well, and still have a full head of hair, and am not in pain, and yes, Tamoxifen is still coming up, but you know, it could be a LOT worse than it is right now. Underneath all of my anger and frustration at the fatigue, I'm grateful to be where I am right now.
Friday, May 7, 2010
Saturday, May 1, 2010
And my last day of radiation is Friday, May 7. I'm down to my last 5 treatments!!
Tuesday, April 27, 2010
It feels like TOO MUCH!! I don't how HOW to fit it all in, when I'm also trying to be a normal person and do things like work, complete the typical errands that we all have (bank, post office, etc), keep my living space semi-clean, spend time with friends, etc. It feels like taking care of my body is a full-time job! Sorry, no, I can't go see a movie with you, because after I sleep for 11 hours, I'll be busy gargling and flossing and swallowing pills and rubbing various substances into my skin and steaming vegetables and pulling on my ears and reading cancer books and massaging the stress out of my jaw and then rushing off to radiation so I can come home and nap again and have nightmares that my therapist will want to hear about in an hour after I get my chiropractic adjustment while eating the rest of my kale during the drive over, thankyouverymuch!
I'll tell you what it's like now -
Today was number TWENTY-FIVE! I only have EIGHT left!! The fatigue has really kicked in. I now feel heavy with exhaustion starting at about 8 pm. It gets hard to form sentences, and I feel like things take me 3 times as long as they should, and I feel like I'm underwater or something. It's a different kind of fatigue than I'm used to. I find myself attempting to write emails and instead just sitting here, staring blankly at the monitor, wishing so much that my thoughts would magically appear on the screen so that my fingers didn't have to expend the necessary energy to type them. It's pretty pathetic! I'm clumsy lately, dropping things all the time, like my pedometer, which I broke. I left my umbrella somewhere downtown, which is so not like me. I have to make myself really specific lists, otherwise I forget stuff.
Last night, I slept for ELEVEN HOURS, in a cashmere sweater because that's what feels best on my burnt skin right now. My skin's doing okay, overall. I think it looks pretty icky, but the nurse said last week that it actually looks much better than others' breasts at this far along in treatment, so... whatever.
Right now I'm doing that thing where I stare at the monitor hoping for my thoughts to magically appear. Because my fingers are having a hard time typing my thoughts, and they're rapidly dissolving from my sleepy brain anyway.
Friday, April 23, 2010
Breast Cancer Action (BCA) has started a letter-writing campaign to KFC and Komen to protest this, demanding that Komen only partner with companies that do not manufacture products that contribute to cancer. (Um, DUH?? I can't believe Komen even needs to be ASKED that!!) Here is the pre-written letter you can add your name to. It's super quick - please sign!! I edited/added to the letter to give KFC and Komen my own thoughts; I'm really on a rampage with this one. I don't know why this, in particular - when there is SO much stupidity and injustice in the world everywhere you turn - has me so riled up, but it does. I told both KFC and Komen that I'm girlcotting them, but it's not like I ever went to KFC anyway. I'm at home eating my local, organic broccoli. KFC claiming that by selling fatty, hormone-filled, carcinogenic chicken breasts they are helping save MY breasts pisses me off.
As BCA points out, this partnership is doing way more for KFC's bottom line than Komen's. And it is appallingly hypocritical of Komen to claim to be trying to end the breast cancer epidemic by partnering with a company that contributes to it.
Yup, that's right, along with gargles, ear pulls, chiropractic, and another thermogram, my doctor has ordered me to keep hula-hooping!! HAAA!
Thursday, April 22, 2010
i've been thinking, about how i can't stand having anything fake/chemical-y/unnatural in or on my body. i'm not sure how to explain it. but it FREAKS ME OUT. it was yesterday's crown that got me thinking about it all, because there was this moment when the dentist paused to let me rest my mouth for a while and i reached for my tooth with my tongue and felt that there was practically nothing left of it, and that's when i realized i would be getting a FAKE TOOTH, and i could feel the tears starting to press at the back of my face. i took a bunch of deep breaths so i wouldn't cry. because my automatic reaction was to freak out, not so much about the pain or whatever, but about something fake being about to go in my body! i calmed myself down by reminding myself that it's a good thing, it's a fake tooth but it will help me eat/has a great purpose, so it's GOOD.
but that got me thinking again about how i almost chose to have a bilateral mastectomy, and how upset i was by all the people who assumed i'd get reconstructed breasts afterwards or kept asking me about that, because i so strongly would rather be flat-chested than have FAKE breasts. i would never ever put myself through dangerous, painful, medically-unnecessary surgeries to get fake breasts that would essentially just be for appearance's sake, since they wouldn't have feeling.
my inability to have anything fake in or on my body reaches far. i hated my braces so much when i was a teenager, again, not because they were painful, but because they were fake - i have journal entries about this. i hated having this metal/foreign substance in me 24/7 for years, and when i finally got the braces off, i was SO SO HAPPY and relieved that i cried so hard on the way home i had to pull off the road!! i do not wear make up or jewelry, have no tattoos or piercings, use only natural soap/shampoo/toothpaste/etc, resist medicine as much as i can, etc. i only wear shoes when i absolutely have to, and have for years been known as the barefoot girl - i even went to classes barefoot in college, until the first frost every year. my favorite place to be is the michigan womyn's music festival, where i wear nothing but underwear, as much as the weather allows for that. i have never done drugs, or smoked, or had an alcoholic drink. i think i've dyed my hair maybe 3 times total in my life, and that was years ago, and it was temporary.
i wonder why i'm like this. the exception to all of this is being in costume - that, i love. but in my normal daily life, i really can't stand anything unnatural in or on me, and it's not a conscious thing, really... it's just...the way i am. yet another one of the ways in which i'm really weird. i'm just hoping that i don't end up needing, like, dentures and a hip replacement someday, and freaking the hell out!! this also partially explains why radiation has been so emotionally unbearable for me - i feel like it's this invisible monster invading my body...something horrible going into my body that really really shouldn't be there.
Wednesday, April 21, 2010
i severely misunderstood what getting a crown on your tooth means. i was naively picturing something like popping a cap on a tooth, the way you pop a cap on a pen. i had no idea it actually means being stuck in the chair for 2 hrs while someone drills your entire tooth down to the bone, making it sound like there’s a jet engine in your head, while you try not to swallow all the blood. he told me he had to drill more than expected, because when the root canal had been done several years ago, the decay was right up to the bone, so today he had to drill a little bit of bone in order to get around it and seal it off. my brain automatically interprets this as, “oh, couldn’t get clear margins, again.” like it was a tooth reexcision, minus K and the IV of happy juice. calling it a “crown” makes it sound like something nice that goes on top of your tooth, but really, it’s like getting an entire new tooth glued to the pitiful stump of your old one.
also, my bite is off, due to my stress-induced jaw problems. he showed me exercises to do to help relax and realign my jaw, and made plans to make me a new nighttime mouthguard, now that i have gnawed the hell out of my old one to the point where it's riddled with holes.
before the appt, i braced myself for the Cancer Conversation i knew we'd be starting with, trying to plan brief responses to his inevitable questions, responses which would not invite further questions. and that seemed to work - he replied with, "my heart goes out to you. i don't know what more to say." i appreciated that, and thought, whew, cancer conversation out of the way. but about 90 mins later when i was in pain and swallowing blood and really just trying to take deep breaths until it was all over,
he actually pulled the earphones away from my head (i was listening to his alison krauss CD - very nice of him) to say something like, "you're going to be okay! you know that, don't you? you're doing so many good things, and you will be okay. if you were NOT doing all these good things, you wouldn't be okay." trying to continue focusing on alison krauss, i did the smile-and-nod thing, but when i heard "blah blah blah silver lining blah blah" come out of his mouth, lulu rushed to my side and started barking like crazy.
lulu's warning to the world at large: DO NOT use the words "silver lining" in reference to cancer, ever. this goes back to the "cancer is not a gift" thing.
by the way, i've been hearing stories from a few of you that lulu has been helping you out during doctor's appointments, too! i'm so glad! lulu can teleport anywhere, instantly, so feel free to borrow her whenever you need her!!
Friday, April 16, 2010
1. I skipped radiation today, just for today, and DAMN did that feel good.
2. I've been experiencing depression and anxiety, which waxes and wanes, and is very stressful. I don't really want to blog about it... I'm just saying.
3. I went to trapeze class last night, and it felt SO SO good to be "back," with chalked-up hands, re-building my calluses... but my entire relationship with trapeze is so different now... that is a post of its own for another time, or maybe in my trapeze blog instead of here.
4. I went to an art show at Keene State College tonight, which included an exhibit by KSC senior Jessica Yager, whose mother was diagnosed with breast cancer last year. Her mother's journey, from diagnosis through treatment, is the theme of Jessica's art, and it's incredible. I was entranced by this fountain she created, with a life-sized bronze sculpture of her mother (post-mastectomy), standing in a healing rain, in a bed of ocean stones. It's beautiful. After I stared at this for a while, I rounded the corner and was suddenly inches from this large drawing of a breast filled with lobules and lymph nodes glowing blue... that brought me to tears, as the memories of my Sentinel Node biopsy came back to me. The blue dye they injected into my areola to make my lymph nodes glow like that, too.
Jessica's art is a mixture of drawings and words (found a lump, Oncotype, mammogram, mucinous tumor), sort of all blended together, and it was so emotional for me because it was like a huge, public, visual representation of the swirl of thoughts/words/emotions that are inside of me. Part of one drawing was her mother lying on the radiation table, there under the linear accelerator, and it was so surreal to be staring at that in an art gallery... that machine that has been a daily part of my life now for a month. I thanked Jessica for her work, rather stupidly saying by way of introduction, "I have breast cancer, too!" And then I met Jessica's mother, who immediately wrapped me in a hug. She asked me how things are going for me, and I blurted out, "I skipped radiation today!!" and it turns out she, too, is about 2/3 of the way through her radiation treatments. We were both a bit teary as we talked, connecting as is only possible with a woman who's been through the same journey as you have. I cannot recall any time pre-diagnosis when there was anything in my life that led me to hug and cry with a complete stranger the instant we met... it's a very strange feeling.
If you're near KSC, check out the gallery... Here's the info: http://www.keene.edu/tsag/exhibits.cfm