Friday, February 29, 2008
this is just what is. that sometimes life is just really fucking hard. and we get depressed, with good reason. i've gotten depressed. i am hoping that changing my rads schedule will bring more light and help me cope. all i need to do is get through this, put one foot in front of the other until i finish.
you probably feel helpless reading this blog as i slog along through radiation. thank-you for hanging in here with me, as discouraging as it may be to read, as painful as my situation may be to imagine.
sadly, i have not had much cheer to offer this week. the fatigue hit me hard and i've been reeling. mostly wanting to lick my wounds in private. i've felt myself measuring my energy, even the sentences here have gotten shorter. my local friends must wonder where i am. i am not returning calls or even listening to messages everyday. i am sorry, but i just can't.
i feel so raw. i am in a kind of hiding. i don't want to talk, all my energy is needed to hold my body and spirit together enough to get up another day and go for my treatment.
i am a cancer hermit.
today as i left the rads department, i ran into martha, my nurse from the last stage of treatment (surgery). she was like an angel walking towards me, smiling. a little safe haven right there in the hallway. martha offered a resource i didn't know about, a local center with a program of therapy and alternative medicine for breast cancer patients. as she spoke, i realized perhaps a therapist who knows breast cancer would be helpful. i feel in need of very specific emotional support. today i talked to the director on the phone, a woman who has been through breast cancer and is living fully on the other side, after five years. just speaking with someone else, another young woman who also had radiation, was so comforting.
i realized i've joined this small portion of the population that has had radiation treatment. yet i don't know any others in my new tribe. it's good to think that next week, maybe i'll be able to connect in person with some women who really know how i feel.
keep praying. keep believing in healing and the power of intention. thank-you for holding this space with me. it matters.
even in hiding, i need you more than ever.
Thursday, February 28, 2008
i am doing everything right. doing above and beyond to help my body cope, help it heal. herbs, salves, vitamins, creams, rest, ice. tending to this breast is my full time job now. the doc assures me this reaction is normal. that my increasingly burnt skin is looking very much like many other patients have.
the armpit and under the breast where anything i wear for support will rub, those places are the worst. i am afraid of the day when it becomes one mass of angry weeping blisters. i cannot wear a bra. i am living with the shades drawn.
i feel more angry than i have in all these months. it's an icky feeling. my inner toddler wants to throw a fit and lay in her bed and howl. i want my mom.
my radiation oncologist did agree to let me take the schedule down to four days a week. i feel it's a choice that will be good damage control on my skin's burns and some relief for my bleak outlook.
my friends, i know you mean well. but, please don't tell me i am in the home stretch, or it all will soon be over. i know that, of course i know that. but hearing it just makes me mad. because right here? right now? it's so awful i feel i can barely stand it.
yet stand it i will. and the new finish date is march 26.
Tuesday, February 26, 2008
it might seem like i am nearly half way through, with 16 done and 17 to go. yet it's really impossible for me to see more than one day, often one hour at a time right now. that's all i can handle. time is surely flying by for you all out there, but it's stuck on slow-mo over here in my life.
the primary reason for this is that the side effects get worse everyday. while the fatigue is no joke, the other effects are even harder to handle. each day closer to being done, while reason to celebrate, is also another day of accepting the burning of my skin. imagine getting a sunburn on your softest, palest skin, then going out into the elements the next day and the next - each day the burn increasing. there is no relief reaching the half-way point and no sense of sliding down hill to the finish. it's uphill everyday till the end, the climb steeper each day. right now, i cannot see the top of the hill, only the step right in front of me.
i feel so very exposed, so deeply vulnerable.
it's gotten painfully difficult, both emotionally and physically, to choose the treatment every day. i think this is where the depression comes in. i may have to ask to go down to four days a week, which while it would extend my finish date, will give the skin more recovery time.
as it stands now, i am scheduled to be done on march 20. i know it will eventually end, that in time i will recover. but this middle part right here? it just sucks. simple as that, my friends. it sucks.
thank-you for all your encouraging comments. you have no idea how much i need them now.
Monday, February 25, 2008
my parents were away in india for the past few weeks, it was so hard not being able to talk to my mom on the phone. but they are now safe and sound, back in snowy michigan, thank heavens. i cried a lake of saved up tears talking to mom yesterday. it felt good to let go of those tears, to release them in a safe space she held for me. even on the phone, it's there. what a blessing.
right now, i feel like the little engine that ran out of steam. 18 more treatments to go.
Thursday, February 21, 2008
there is a book on the subject, written by rosanne kalick, who has survived cancer twice. it's called cancer etiquette and has gotten rave reviews on amongst cancer patients. i've been hesitant to blog about this subject until now. but i'm getting both more bold and more impatient the longer i am in treatment. and what has changed is sadly not the amount of insensitive reaction comments i'm getting.
what has changed is my willingness to expend emotional energy being polite when someone says, "oh, you have breast cancer? that's awful. you know, my (mother, aunt, friend, boss) died of cancer." i just stand there thinking, wow, that is the last thing i need to hear right now. i know it's a knee-jerk reaction, said without thinking and intended to comfort or somehow relate. of course i realize it's not malicious, not meant to be hurtful. yet if i had a dollar for every person that told me about a friend or relative that had cancer..! the painful truth is, no one can really understand what i'm going through, even if they have had cancer themselves. each person's body, treatment plan and experience is so different.
weeks ago i mentioned this breast cancer website in a post. circus of cancer. i don't know if anyone other than my mom went and read through it, but if not, you should. and not even really for me. i'm not the last person you'll know with cancer, of that i am certain. there are very specific suggestions about what to say and do to help. and a great list of what is not helpful, things one might say or do that would unwittingly make the cancer patient feel worse.
i'll be the first to admit that before breast cancer happened in my body, i probably said silly, insensitive things to someone struggling through cancer. i cringe now to think of it, wishing i knew then what i do now.
another site, chemo chicks has an extensive list of short "excuse me?!" reports from actual cancer patients. some will make you giggle, others will have you fuming. it's easy to say, well that person is just a dumbass. just let it go. as we all know from life, comments made by dumbass' and friends alike can hurt. i can tell you from my experience that fielding comments and "letting go" of the ridiculous ones takes emotional energy. energy i don't even want to spend. frankly, it keeps me from going out socially, especially into groups of people i don't know.
i've starting to feel a bit like an educator about the cancer experience. i certainly want to help teach people, in some small way through this blog, how to support anyone they may know with cancer. the best thing is to listen to the person with cancer before blurting anything out. take your cues from them.
so you may be wondering about now, what should i say or do? here's my short list of what i think is helpful:
say something like: i'm sending you good thoughts and/or praying for you. simple well wishes on a regular basis mean so much.
offer something specific: can i bring you a meal tonight? do you need help with your laundry? asking what you can do to help in general is great, but sometimes i don't even know what i need until someone suggests it.
say: i'm here if you need me, here's a list of things i could do for you if you like. it's helpful to know who to turn to for help with specific things.
offer: it's a beautiful afternoon, would you like to take a short walk with me? i need to get more exercise, but don't always have energy for talking, especially about the cancer.
i've been very blessed to have so many people reach out and help, especially after my surgeries. thank-you, everyone! now that i am in the thick of radiation, there are still needs, but i'm not always sure who to ask for what.
i'm doing better than i expected to be at this point, 13 rads done, 20 to go. yet for me to keep working (ie. paying the bills) through this emotionally and physically grueling schedule of radiation, lots of other tasks have fallen off. it's a big job feeding myself well (all organic, enough protein, regular meals), but i am doing it. housecleaning, laundry, maintaining the car, keeping my medical bills straight -all those tasks are either not getting done at all, or only minimally.
Tuesday, February 19, 2008
yesterday turned out to be the best day i've had in quite a while. mother nature delivered a 60-degree day, complete with abundant sunshine and spring flowers. because of president's day (usually it means nothing to me) i had no radiation treatment. i took two walks, one being the longest i've done in months and felt great.
beautiful weather, exercise and no rads. what could be better?
amazingly, it got better still. i finished my taxes in record time. then, a box arrived from scharffen berger chocolate in san francisco. the gorgeous heart-shaped, red velvet box of truffles you see above was inside, along with 3 large bars of their premium dark chocolate. I'd won the chocolate lottery! it started last week. i entered a little contest on the blog of tim ferriss, author of the book, the 4 hour work week, that is very inspiring to me as i design a new lifestyle.
tim asked his readers to leave a comment with three reasons why they should get a box of chocolate goodness from his favorite chocolate makers, scharffen berger. we all know dark chocolate is good medicine for cancer, so i decided to leave my reasons. here is my entry:
I’m a fan of your book and blog. So inspired, in fact, I quit my day job in October and went full-time in my studio. I want that chocolate! Reasons why are these:
1)Two weeks after quitting my day job I was diagnosed with breast cancer. I’m doing battle (and winning!) with the best of Western and Eastern medicine. I need those anti-oxidents, man!
2)I’m a young single woman and I’ll be spending my Valentine’s Day morning getting radiation treatment and meeting with my oncologist about side effects.
3)If I’m not having sex this Valentine’s Day, at least I need to be having chocolate. (Like you, Tim, I eat a little dark choc every night as well, actually…so even if I don’t win, I’ll eat some chocolate)
By the way, congrats! 4HWW is totally NOW and sexy. Glad Cosmo is on board. i am sure that means so much. *grin*
If you want to verify my (sob)story, I’m writing a blog on it here:
low and behold, i was chosen as a runner-up in the contest. however, when i opened the box i received yesterday and it soon became clear that what arrived was a grand prize box, thanks to the generous soul of a sweet man named tom at scharffen berger. can you believe it? he upgraded my prize.
i am savoring my treats, delighted at my good chocolate fortune!
some other kind folks who read my entry on tims' blog also emailed me their encouragement and support. thank-you so much, you cannot know how much that means. the whole experience is validation of this practice: tell your story, put yourself out there.
i really didn't think i would win any chocolate. if anything, i thought my entry seemed a little pathetic and i was hesitant to play the "cancer card". but i am learning that if you tell your story with honesty and a sense of ownership, people see beyond the particular situation. they don't just see cancer patient, i think they then see you. or me, in the case of this blog.
thanks for seeing me, tim, tom and all of you out there reading. it really helps me feel more like a person and less like a patient.
Saturday, February 16, 2008
although, i guess it is a choice. a choice to go with the flow of that river. i could struggle and resist. in fact i have, mightily. many times i stop the flow and thrash around as if suddenly blind and drowning. lessons learned can disappear in seconds. if you've been reading here for a while, you've certainly witnessed that struggle.
truth is, this blog keeps me honest. you out there reading keeps me right here. writing the story here holds up the mirror, holds me accountable week after week. it may just be that this blog is saving my life. or at least, helping figure out how to live.
live with more gratitude, more joy, more compassion.
when i quit my day job in october, just a couple of weeks before the breast cancer showed up, i had certain goals in mind. big changes in life to put into motion. i was gearing up for a life of more balance and health, both in body and spirit. i'd fallen out of shape, a long, slow fall over three years of working seven days a week. i'd gained uncomfortable weight and struggled with injuries. and perhaps worst of all, my spiritual path felt bogged down with leaves and debris. i had a plan to sweep it all clean and make a fresh start. i was ready to put some healthy habits back into place.
meditation, exercise, journaling.
with the discovery of the turnip, i immediately turned to journaling here. an old habit, dropped in the frantic pace of the last three years. then, picked up again and embraced like an old friend. i know the mediation and exercise pieces are coming too. in fact, some of the lessons of mediation seem built into this experience. developing self-compassion being top on the list.
i'll admit it's strange. but somehow i think this cancer thing is teaching me how to approach my business and career path in a whole new way. i have just launched a new jewelry collection that is shaping up to be quite a hit. a few months ago, it wasn't even in my head, let alone my plans. the challenges i've been facing have pushed me to creative overdrive. there has been a new kind of clarity, a new way of looking at how i work. without the cancer, i don't honestly think i would be right here. i'd be somewhere else, perhaps equally good. but i will bet, i'd be doubting myself more.
and now, to the news. recently, a couple of bright spots. for one, a new rads time slot: now at 9:45 am. which means my morning routine of drinking down my cups of tea, herbs and veggie juice is a bit more gentle in pace.
best of all, i am not stuck in traffic with the 9 to 5 crowd. small blessings. oh, thank-you.
Thursday, February 14, 2008
i need to slow down and take the time to really baby this boob. she's been through so much fucking trauma in the past few months. so i'm doubling my vit-c consumption. sucking up to the reality that i can't just go straight to my studio from the hospital, i need to go home first and apply ice packs to the swelling, smooth on aloe gel and calendula cream for the burn. if i am to keep the side effects manageable, i really do have to be so on top of this stuff.
it's a bad time to get lazy, or to be tired. shit. it's also a really crappy time to need to do anything other than the healing plan. like working.
thursdays are tough. it's the day each week i've decided will have to be a throw away. read the rest of this post and you'll soon see why.
here's the drill. i go from radiation at 9:45 to another wing of the hospital and wait in another room full of people with cancer to see my radiation oncologist. she checks the boob, i tell her about side effects and have a chance to ask questions. today, that all took forever. it was after 11 before i was even heading to my car.
then i drive across town to see dr. kou, my chinese medicine guru. he checks my pulse, looks at my tongue and eyes. very good, you are eating healthy. puts in the acupuncture needles and leaves me to rest on the table for 45 minutes while he makes up my herbs for the week. by the time i get home at almost 1 pm, i am starving for lunch. but i feel too spaced out to cook anything. about this time i am sincerely wishing i had my mom here, fixing me food. which strikes me as ridiculous, as i've been independent from my parents for 20+ years.
i need a nap and classically, i am not a napper. i can hardly sleep well at night, let alone in the daytime. but now, with radiation doing a number on me, i fall asleep. wake an hour later, groggy and grumpy.
where has the day gone?
by 3:30 i am opening my rental office here at the apartment complex i manage. i did not work on my jewelry today, did not even go to my studio. i barely checked email. by the time i close the office at 6:30, i am so done with this day there is not a chance in hell i am doing anything tonight more engaging than watching a little tv and petting my dog.
next year i will celebrate valentine's day. if i'm not recovering from surgery. sigh. damn, that sounds even more pathetic written down. i feel a little down today.
9 rads done, 24 more to go.
Tuesday, February 12, 2008
it's a big task, keeping on top of the healing curve. i've got to be super organized each day. there is so much paying attention. did i get enough protein today? oops, it's time to eat and i was supposed to take my herbs 1/2 hour before. shit, i am late and now there is no time to make juice. run out the door, sit in traffic, lay on the radiation table, rush home. make the juice finally. ah, it's the green medicine i crave.
ramone and eric are my rads techs. they let me listen to my ipod and i am not even pretending to keep the volume low so they may talk to me. they use motions if they need to communicate, i mostly close my eyes anyway. pink martini keeps me far away, in the beautiful world of my imagination. i smile while i am getting the treatment, i believe my cells will get the message. don't worry, healthy cells, i know this is hard. we will weather this storm together, my dears. and in a few weeks, you can rest.
i am looking forward to the day i get my body back. march 20 can't come soon enough.
Sunday, February 10, 2008
Saturday, February 9, 2008
gratitude is the open door to abundance.
i paused. yes, that is the truth of my life right now. breast cancer is teaching me about gratitude. abundance is simply pouring into my life. this week it nearly became an epic flood. perhaps i exaggerate to make my point. i guess an epic flood would be winning the 80 million dollar lottery?
it's all relative, this abundance stuff. i'm measuring abundance by my basic needs right now. for me, with all i have on my plate, it feels damn amazing to see that i am making it. even if just barely! a part of me is deeply surprised that bills are getting paid at all, that i am not a sinking ship. a couple of months ago, i couldn't even see this current abundance as possible. i was lost in a fog of fear, pain and panic.
today i do feel very tired. i think it's the side effects of a very busy week in the studio, not the radiation. i've been so busy due to being featured on a major-league design blog, design*sponge. wonderful response and sales have come from that feature. i also have some sharp, shooting nerve pain in the breast. a side effect of radiation that my doctor told me this week some women experience for years after finishing treatment.
oh, my. i am picturing those little zings of pain years from now saying "how's your gratitude today, tay?" i know how easy it is to slide back into old mental habits. i want to hold the lessons i am learning now close and soak them into my very cells.
i am trying to apply my positive intention to the physical body as well. even though i had a nightmare last night that my breast became so shrunken and deformed looking that i didn't reconize it. in my dream i looked down while getting dressed after radiation and the breast i knew was suddenly gone. in it's place, this thing. a hideous breast, not even human really. like the breast of an ancient wizened troll.
ah, fear lives in a very, very dark place.
even while i travel through my day, thinking positive, lavishing loving energy on my breast after each treatment - this darkness is still underneath. i don't even want to fight it off, that seems like a waste of energy. i need all my positive energy for the work of healing. i need every scrap of fight in me for holding onto my connection with the light in the universe.
i am hoping if i just don't feed it, the fear will just starve and die a natural death.
Thursday, February 7, 2008
today, as i lay on the radiation table, i was listening to this. imagining the beautiful china forbes, lead singer of pink martini in a powerful visualization. engage your imagination and i'll take you there...
it's the inside of a really cool apartment (my breast) with interesting objects, wonderful furniture and amazing turkish carpets. china is singing this song and dusting the book shelves and objects. she isn't dressed like a cleaning lady however, she's wearing a jazz-era inspired dress and heels like she does on stage. as i hear the loud buzz of the radiation machine start, i imagine china has begun to slowly vacuum the carpets(my cells) to the music, with obvious appreciation of their beauty.
she is still singing this song as i get up from the table and begin to dress.
update on the chinese medicine herbs, 8 weeks are now covered, thanks to generous hearts. i am so grateful and feel the love with every scoop. i am taking 5 spoonfuls of the herbs (powdered) in water 3 times a day. i swear they are starting to taste better, i think it's the beautiful way they have been provided through your donations.
thank-you so very much!
Wednesday, February 6, 2008
sigh. all my calm mind seems to be focused on the radiation treatment itself. the rest of the day, i just feel out of sorts. all grumpy and hermity.
of course, there is good news too! all your thoughts and prayers are effective even if i am having a less-than-wonderful kind of day. donations for chinese medicine have now reached 7 weeks! hooray! thank-you so much to all those who gave so generously and to everyone, for all the positive thoughts on this subject. i am now covered for the weeks radiation will last. and i am taking them faithfully, as bitter and weird as they taste.
i am feeling tired, actually. but i think it's due to the shock to my system that this early morning schedule has delivered. i haven't had this much opposed structure in months. nor have i gotten up this early. but i am sure that adjustment won't take too long.
keep the comments coming, my friends. you cannot know how much i delight in, and depend on, your kind words of encouragement.
Monday, February 4, 2008
A middle radiation beam
B side radiation beam
C bright yellow area indicates place where radiation is given to the breast
D rib cage/chest wall
H sternum/breast bone
in cancer circles, radiation treatments are called "rads". i'm getting hip to the nomenclature because like it or not, i'm in the cancer club. it's a lifetime membership. even when i'm cancer-free for a year and technically a survivor. even after 5 years with no reocurance, when i'm in the "cured" category.
happy monday, my friends. i promised a report on how many weeks of chinese herbs were covered by donations. for those of you just tuning in, saturday evening i posted my need "would you sponsor a week of chinese herbs"?
since then, 4 1/2 weeks have been covered. behold, the power of positive intention. behold, the innate goodness of others. 3 1/2 weeks of herbs are still needed.
i am awed, humbled and so thankful.
my first day was ok. walking through the long halls of the hospital, i was listening to my amelie soundtrack and picturing myself walking in paris, the star of my own movie. when i got to the radiation department, i talked ramone, my radiation tech, into letting me have my ipod during the treatment. it was longer today than it will be in the future, as they had all sorts of positioning x-rays to do. my wrists and shoulders are sore and tweaked from gripping the bar above my head for 45 minutes. but i am ok.
i am ok. i am ok. i am swallowing my herbs, drinking my veggie juice and green tea and i am going to be ok.
positive intentions. i lay there on the table and imagined the northern lights beaming down on me.
there will be 33 treatments in total. everyday at 9 am. rad.
Saturday, February 2, 2008
yes, 30 treatments. sigh. going to radiation is my new job, it seems.
the most common side effects people report from radiation treatment are fatigue and skin reactions. for some, it's a crippling fatigue, although not permanent. i am more concerned with skin reactions, as i have very fair and sensitive skin. for certain, there will be sunburn-like reactions. i am hoping and praying that my skin can take 30 treatments, that it does not break down, crack or bleed. rest assured, as a former bodycare specialist, i will be calling upon all my knowledge to help my skin as much as i can. protecting the cells and tissue that are not cancer is my number one priority. i'm working on this internally and externally. right now, i have one tiny spot on my surgery inscison that is not healed over and that has me really worried.
a few weeks ago, i saw a wonderful doctor of chinese medicine. on the faculty of NCNM, dr. kou was recommended by a friend who is a naturapathic doctor. i am excited about dr. kou because he specializes in alternative cancer treatment. the acupuncture i received was great and he prepared a special powdered chinese herb mix for me to take 3 times a day in water. dr. kou has seen good results when combining the herbs and traditional cancer treatment. and it intuitively feels right, this chinese medicine. the shocking part was the cost. insurance doesn't cover herbs, just acupuncture. and the herbs are $45 a week! plus, i need to take it for at least the 6 weeks of radiation treatment. he recommends taking it another 2-3 weeks after i finish as well.
i told him i couldn't afford it and left sadly, with my one week supply.
since then, i've mentioned it to a few friends. they all encouraged me to post the situation here. you can imagine how much resistance i have to asking for help, again and again. i'm still fighting feelings of shame for needing help. (obviously, my personal work on this issue is not complete!) for these past few weeks i have pondered it, put it off. now the moment of truth is nearly upon me. radiation is about to being. yet this last piece is not in place and that is making me feel very uneasy. last night i had a terrible dream about it.
so, here goes. perhaps you've been wanting to donate something but don't have much to spare? perhaps $45 doesn't seem like it would help? well, i am putting it out there. more positive intention. would you like to sponsor a week of the chinese herbs? i would be very, very thankful. if you want to help in this way, you can simply use the donation button in the sidebar. also, if you don't want to do it through paypal, just send me an email and i will send you my address to do it through the mail.
i promise i will post a report here so you all can see how many weeks are covered. please don't feel bad if you can't give monetarily, the support you all send me in the form of thoughts and prayers is keeping my spirit and heart full of love. and full of light when it could be so, so heavy and dark.
i am still working this weekend on coming up with positive visualizations of the radiation rays that will help me fully welcome the healing power they offer. if anyone has a visualization to suggest, please do so post haste. if you feel shy putting in the comments, you can always send it by email.
thank-you, my friends for being here, for hanging in through all this stuff with me. i'll be posting more often in the coming weeks, i expect. this next round of treatment is a pretty stiff dose of reality. it's like entering the land of the sick again, just going to the hospital.