the doing & undoing: part ii, origins, psyche, skin, heart

i'm breaking this up because i think it will be less overwhelming this way...

chest x-ray (site of original cancer) is clean. x-ray tech (as per usual) didn't believe me when i said i have *really* long lungs (like a marathon running tuba-player) and had to take an extra picture or two because he cut the bottom off of them the first go round. hopefully a bit more radiation is one of those hair of the dog things, right? somehow i  suspect not... anyway, my foobs looked super cool in the x-rays.

standard followup also includes an interview with a psychiatrist. the girl is new this year and i'm fairly certain she's younger than i am, like maybe by a lot. 'but how are you feeeeeling about things?' oh, i feel great lady. i *love* sitting in the clinic watching children be dragged away for chemo/bone marrow tests/shit that i've done and imagining they're my kids, crying in front of strangers. it's awesome. also, it's super cool that i've been clinically depressed for the past 12 years and on medication for as many. i look forward to spending a large portion of my paycheck on therapy, psychiatry and medication. FOR THE REST OF MY LIFE. this cancer thing is awesome. 'so it sounds like you're well connected with psych professionals then?' yup. it's PEACHY. so that went well. pffft.
 

dear celeste, please have danny look at all the moles/freckles/skin tags and any other skin changes at least twice a year. it could be skin cancer from your cancer treatment. love, your oncologist.


'don't you see a doctor that often? can't they do it?' yes, but you see me naked. every single day. you'd be more likely to notice a change than someone who sees me twice a year and thousands of other naked people during that same time frame. 'hrmmm. well, will you look at the moles on my back twice a year?' sure babe, sure.

 

aaaaand there was an echocardiogram and an ekg. as everyone suspected i have no heart. just darkness. at least when you try and look through a reconstructed foob. the lady had to get creative on angles with the wand (down from the clavicle and up from below my sternum) but eventually got a clear enough picture i guess. i was given a stern warning about colds i can't shake and about coughs that don't go away as they may be signs of heart/lung disease. m'kay. gotcha. 

 

the doing & undoing: part i, breasts

first, how the fuck is this blog still about cancer, even a little bit, almost 14 years after my original diagnosis? i'm feeling a little resentful of that fact, as i typically do after my annual oncology appointments, which began with a 9 hour marathon at stanford yesterday.

actually, it really began a pamf, seeing dr. bates for my second post-op appointment. (i'm feeling too punky to photograph myself today, but i will tomorrow as it has been exactly two months since my reconstruction.  in the meantime, have some fun with your own foobs and a flashlight, as danny and i did with mine last week. a nurse friend told me that this works with all implants, but since i have no pesky breast tissue to block the light, it works very well with mine. fair warming, it's a bit startling to see *all* the veins under your skin.) dr. bates is very very pleased with my final result, as am i. the right side is a little tighter in its pocket still and so i've been instructed to massage more vigorously. he asked again if i want to do anything about my nipples (or lack thereof i suppose). apparently i have enough aureola skin to reconstruct out of that but i told him i think i'll pass, at least for now. anyway, i see him in another six months. 

i was a little nervous about seeing my oncologists at stanford because, as you'll recall, i completely circumvented them when i decided to do my mastectomy. i intentionally went to a breast oncologist who knew nothing of me except what she read in my (extensive) records. i was tired of being treated like a hysterical/hypochondriacal teen, instead of a well-educated woman. so, i got my bmx and scheduled my annual stuff at stanford for after everything was done. surprise! anyway, i unexpectedly had a chance to spent about 20 minutes with dr. link yesterday (he's the onc that treated me for hodgkins, but not the one who follows my long term progress). it was incredibly, incredibly cathartic and validating for me. the nurse put me in a conference room where i rubbernecked until he happened to walk by. i caught his glance and he said 'hey, what are you doing here?' waiting to talk to you. he gave me a most sincere bear hug and then stood back and said 'i heard you had sort of a big summer?' to which i am certain i winced. what followed felt how i imagine it feels to have an overbearing father tell you he loves you and is proud of you, on his deathbed, after years of trying for nothing more than to please him. 'incredible, you're ahead of the curve. you made an incredibly tough and smart decision to take control of your risk. i'm impressed. you're very strong.' 

in other words, he completely validated my decision to have a prophylactic mastectomy, after i decided i didn't need or want his validation. and it felt, at least momentarily, amazing. his most recent study (and that of an oncologisy at st. judes) demonstrates that the breast cancer rates among female hodgkins survivors are almost identical to those of women with the BRCA1 gene. *jaw* that data is more discouraging than the data that i based my decision on. sadly, that means that the 'kinder gentler treatment' i received didn't really improve cure rates, or long term outcomes for hodgkins lymphoma patients. radiation is radiation and even in lower doses, (25 Gy in my case) it's both a cure and a curse. i'm posting this article in it's entirety so i can find it later. dr. link is quoted in the second half.

June 4, 2012 (Chicago) By Charlene Laino Girls treated with radiation for childhood cancers are at elevated risk of developing breast cancer in mid-life -- even if the radiation dose was relatively low, researchers say. "We were surprised to find that women treated with radiation to the chest during childhood have a risk of developing breast cancer that is comparable to that of women who are carriers of the hereditary BRCA mutations," says Chaya Moskowitz, MD, of Memorial Sloan-Kettering Cancer Center in New York City. Moskowitz and colleagues analyzed data from more than 1,200 women treated with radiation for childhood cancers and found that by age 50, 24% had been diagnosed with breast cancer. Among survivors of Hodgkin lymphoma -- who were treated with high doses of radiation that are no longer used -- the rate was 30%. By comparison, about 31% of women who carry a mutation in the BRCA1 gene, which most doctors recognize as a known risk factor, are diagnosed with the disease by age 50, she says. Among women in the general population, the rate is 4%. Previous studies have shown that women treated with radiation to the chest as children are at increased risk for breast cancer, Moskowitz says. But this is the first study to show that risk is comparable to carrying BRCA mutations, she tells WebMD. It has also not been clear how lower levels of radiation used to treat pediatric cancers other than Hodgkin's disease affect breast cancer risk, Moskowitz says. She notes that guidelines developed by the National Cancer Institute-sponsored Children's Oncology Group recommend that women treated with 20 grays -- a dosage measurement -- or more radiation to the chest begin annual mammograms and breast MRI scans at age 25, younger than recommended for average-risk women. But the study showed that women exposed to between 10 and 19 grays are also at heightened risk and therefore may benefit from early breast cancer screens, Moskowitz says. Approximately 50,000 women in the U.S. have been treated with 20 grays or higher, and an additional 7,000 to 9,000 have been exposed to 10 to 19 grays. The findings were presented here at the annual meeting of the American Society of Clinical Oncology (ASCO). 12 Million Cancer Survivors "These are rather striking data," says Nicholas Vogelzang, MD, of the Comprehensive Cancer Centers of Nevada in Las Vegas and US Oncology. He was not part of the study. "We have an obligation to those many thousands and thousands of young women we treated years ago. Hopefully this will increase our awareness of [the] need for mammogram screening of this population," he says. ASCO President Michael P. Link, MD, says that once active cancer treatment ends, survivors typically receive ongoing follow-up care from their primary care doctors. "Patients should empower themselves and bring a summary of treatment they have received to their doctors," says Link, the Lydia J. Lee professor in pediatric cancer at Stanford University School of Medicine. He notes there are nearly 12 million cancer survivors in the U.S., up from three million in the 1970s. The work was supported by grants from the National Cancer Institute.

five weeks post-op

well, it it apparent in photographs how much faster ALB is dropping! i assume (hope) that's what's making them look like they're such different sizes. had to stop taping the scars for a while because i am so flipping allergic to all the adhesives, BUT, if you aren't allergic try it! this helped them flatten so much.

four weeks: ladies from BCO, ask away if you have questions please! just leave me comments!

nice wide, wireless bra that doesn't come up *too* high. not too much change from last week and things are still looking somewhat uneven (in a way i can't quite put my finger on). these things don't move. i'm leaving micropore paper tape on my scars for now to help flatten them out. studies are showing that it is as effective as silicone strips and more effective than any creams or gels on the market. helps prevent keloids from forming by adding tension and pressure. projection is pretty good. think there's still quite a bit of swelling up top though. and i am certain there is a lot of swelling in my armpits. the reality of sub-muscular implants ('unders') is this. aaaand rippling. to take this picture i bent over as if to touch my toes and just let things hang. the indent is a ripple in the implant and it shows because there is no muscle there to cover it. in any normal position i don't have this issue. there's no way you would be able to see this under a bra/shirt. that said, i have a better understanding of why saline ripples so much worse and why a more cohesive implant (like the Sientra) is better in this regard.

three weeks post-op or is anyone tired of foob pics yet? as lorenzo would say (loudly, in public): tough titties <--see what i did there?

so, it has been a week of ups and downs. one moment i'm thrilled with free new bras (one in particular that fits just perfectly), the next moment my incisions are sore and all i want to do is ace bandage myself and sleep. overall i'd say i'm more aesthetically pleased than i was last week. at this very moment, looking at pictures, i'm *so* content with the size. more projection would have been too much and less would have made me mourn my expanders (weird, i know). and i knew these foobs, as with all breasts, would be sisters, not twins. they most certainly are not twins.

i've been feeling emotional about this whole step, so much more so than i expected. it wasn't until i was talking to mara earlier in the week that i realized why. there was so much anticipation in the first (bmx) stage. there were weekly appointments for expansions and countdowns to exchange time. and now the exchange is done and they're lovely (but not perfect) and it feels over. and i don't know how to transition into someone who just loves her new foobs and isn't constantly medicalizing them. the truth is, i'm so much more comfortable in a doctor's office than i am in a salon. i remember the last day in clinic D when i finished my hodgkins treatment. it felt to me like being dumped. there was something so anticlimactic and devastating about spending all time/energy on one task and then having my oncologists say, yeah, we don't need to see you for six months. this feels similar, but not nearly so severe. to be honest, i am someone who has a very difficult time just living in the present. i am always leaning forward with my arms outstretched towards something in the not too distant future. i carry an actual paper date book in my purse and love flipping forward to see what's coming up (even though i also have an iphone). i have countdown clocks for things spectacular and mundane alike. i've worked to beat back over-planning and worry, to surrender control in the past five years. but certainly, this mastectomy was a huge act of control wasn't it? in this case, it's to help me stay healthy, but boy is it easy to fall back into old emotional habits.

starting to calm down a bit (well, not the veins. they get all excitable when anyone even *thinks* about my foobs.) i think the right side (my right side) is dropping a bit faster than the left. ah, go with the flow right foob. always just trying to do what's best.  not even particularly smug anymore. ALB will not sink into its pocket quite yet. trouble. i didn't intend this ALB scar picture to be artsy, i'm just bad at self photography (danny is worse though). i'm curious to see where the scars are at once they've softened... see, like lots of other women with foobs, i can go braless in a dress with zero support. and since i have no nipples, i can even choose a flimsy fabric. to demonstrate the closer positioning and *slightly* more natural look of these foobs here i am in a bra that i wore during expansions. overall, prettttty satisfied. ;)

dear blue cross, bend over. again. love, me

i saw dr. bates yesterday and he finally took my tape off (oh sweet sweet relief). scars look pretty amazing considering how recent my surgery was. he says i'm still fairly swollen and bruised in the upper poles and very tender under the pits. that is expected to last another six weeks or so. i'm settling into these foobs physically and emotionally. i can't believe what a transition this has been from the expanders. ANYWAY, i went to nordstroms after my appointment in search of a regular bra without an underwire (in other words, not a fricking sports bra that gives me uniboob and makes me feel completely unfeminine. i explained my situation to the group of women standing around (one said 'oh my god. those are the nicest looking reconstructed breasts i've seen in the 15 years i've worked here.' :D ). someone went and got a woman who specializes in reconstruction and insurance billing. wait, what!? yeah, bras are totally considered prosthetic devices after bmx/reconstruction. holler. i called my insurance right then and there and a series of miracles occurred. first, i only waited on hold for 15 minutes. i know, right? next, i got a guy who wasn't an asshole to me when i asked him to confirm that bras are 100% covered after a prophylactic mastectomy. 'you know what? i haven't gotten that question. let me put you on hold and check.' and he checked and came back and said 'you were right! it's covered. you just have to go to an in network provider. would you like me to look them up?' i said yes. he explained that the list was huge and offered to CALL EVERYONE ON THE LIST TO FIND SOMEONE IN MY AREA WHO COULD BEST SERVE MY NEEDS. a half an hour later he called me back (from los angeles) and said 'i spoke with tammy at the next step boutique in los gatos. you will be fully covered. she was very nice and will bill us for you. do you need directions?' OH. MY. GOD. ohmygod. seriously. so today i went to the next step. and i walked in and said 'is tammy here.' and she said 'you're celeste!' and i seriously left with four bras (plus one from yesterday at nordstrom) and prosthetic nipples (i fucking love these things!). uh-mazing. so yeah, they aren't the most amazingly sexy bras in the world but they are SO comfortable and they were free (and all expensive ones made by natori, wacoal, and amoena!) (oh, and i totally got rid of my fugly walmart bras, remember them?)