Blog (Irregular Reports From the Front)

After a long day at UCSF on Friday that culminated in a meeting with the lovely Dr. Ewing the breast surgeon (no really, she truly is lovely, as is her staff, and for that I am extremely grateful), nothing has changed but things are clarifying more. She agreed with the assessment of Dr. Fowble (the radiation oncologist) that my previous radiation treatments had likely contributed to the occurrence of this breast cancer, and that the possibility of the same thing happening to the other breast was therefore significant. So double mastectomy it is. She also gave me information about the different choices I would have for reconstruction, which basically came down to nipples (which would mean a longer overall process and involve an additional surgery for a total of three surgeries before I'm done) or no nipples (shorter process, two surgeries total).

These decisions are really hard. Part of me just wants to say "take off the breasts and let's be done with it, I'll learn to live with and love a flat chest", and not even mess around with reconstruction. But the other part of me that has been a big-busted, hourglass figure girl all her life feels like it just wouldn't be satisfying to live my life without something up top to balance the bottom. So much as I HATE the idea of additional surgeries and dragging this process out longer, I think I am going to go with the nipple-saving process, because I'm pretty sure that future me will appreciate the end result more.

I am supposed to meet with a plastic surgeon sometime next week, and that will hopefully result in some additional info for me about the details of how the reconstruction process will go and exactly when the surgeries will happen, but for now my understanding is that it'll go something like this. First, hopefully around the beginning of November, I will have a surgery to remove the cancer and at the same time reduce the size of both breasts. That will take about two weeks to recover from but then I will have to wait and let the reduction heal up for six months, and then after that I will have another surgery which will be the full double mastectomy and the insertion of temporary "stretcher" implants. I will recover from that and keep stretching my skin for a couple more months and then have a third surgery to insert the permanent implants.

The wild card in this process that we can't know for sure yet is whether or not I will also have to have chemo treatments. The MRI and ultrasound tests I've undergone seem to imply no obvious involvement of the lymph nodes or anywhere else, but the only sure way to tell that is a biopsy of the lymph nodes that happens during surgery. If the pathology report comes back showing clean lymph nodes, there's a decent chance I won't have to do chemo (or just a "light" dose). If it comes back with cancer found in the nodes, I will likely be advised to do a round of chemo, and the reconstruction will have to wait until after that process is finished and I'm healed from that.

There is also still a potential wild card floating out there with the results of the genetic testing. If that test shows any sort of conclusive mutation that might also put me at risk for ovarian cancer, they may also want to remove my ovaries during that first surgery (which means instant menopause). I guess the thinking here is "better to recover from everything all at once" rather than add yet another surgery to the list, and an oophorectomy (what a word) would be done laproscopically so it's not actually that much more added to the recovery process (except for the menopause part, but that's a different story with different solutions and frankly I'm still hoping to not even have to think about that story just yet.)

As someone who went into this with a fairly large fear of surgery leftover from the first go-round with cancer, the idea of having to go through multiple surgeries is scaring and saddening the shit out of me, but I am wrestling with it and reaching for courage in the face of future adversity. Because what else can I do? Can't really say no and can't run away, much as I'd like to right now. I know I can do this, and that eventually it'll all be over and I might even be grudgingly pleased with the aesthetic results (I know for sure I'll be mighty pleased with the surviving part). But wow is this a hard fate to accept (especially with the knowledge that it was my decisions around treatment in the first go-round that led me to the treatments I have to live with now). Cut off my breasts? I don't wanna, I don't wanna, I don't wanna! But I wanna keep living more than I don't wanna hurt, so courage must (and will) be applied. Any and all help in keeping that courage strong and sustained will be gratefully accepted.

Long and emotionally difficult day at UCSF today. Full report later but for now let me just once again say that I hate this and I am full to bursting of "don't wanna!" :(

And oh yeah fuck cancer.

Slowly but surely some info is starting to emerge. I have good news and bad news (don't you hate it when people say that?) and there's still more to figure out, but here's the update as of today.

Good news: I got the results back from yesterday's MRI, and from what it could see, there is only one tiny (6mm) tumor in the right breast, nothing in the left breast, and no obvious enlargement of the lymph nodes (which if present might indicate that the cancer had spread beyond the one spot). That's all very reassuring and makes us hopeful that this was caught early enough to be "only" stage 1 (though final staging is not complete until after surgery).

Bad news: I went to UCSF today for a consult with a radiation oncologist recommended by my surgeon. She told me flat out that given my previous 9 weeks of radiation treatments for the Hodgkin's Disease 23 years ago, she would recommend against any further radiation treatments of any kind for me. That means a lumpectomy is right out, since in order to make that successful, the lumpectomy option always includes radiation afterwards. I had a feeling that was going to be her recommendation so I was braced for that, but I wasn't really expecting what followed (though in hindsight duh, I totally should have). She then also said that she felt that the previous radiation treatments had contributed to this occurrence of breast cancer, and since both breasts were part of the previous radiation field, there was approximately a 20% higher risk that the cancer could occur separately again on the left side at some point in the future. That's a risk that would be added to all the other risks I already have (the same risks which clearly tipped me over into the "bad gamble" range this time). So while she didn't make an explicit recommendation (that's for the surgeon to finalize), it does now sound like if my top priority is to not have another occurrence of cancer (which it totally is), it would be a smart idea to opt for a double mastectomy.

Needless to say I feel very unhappy about the idea of undergoing major surgery that culminates in me losing both breasts. At the moment I'm utterly floored by that scenario, and trying to process a lot of grief and fear--and I have to say, my attitude will NOT be helped (yet) by optimistic look-on-the-bright-side chatter about how great it will be to have reconstructed perky fabulous any-size-and-shape I want breasts. They will be fake and not mine and I hate being forced into this change, regardless of any silver lining that might eventually shine through.

More info to come as this week develops. I am sure we will be talking about whether or not follow up chemo/hormonal treatments will be necessary, and I'm sure we will be talking about what kind of surgery would provide the most successful reconstruction option(s). I know it could be worse (it can always be worse) but it feels pretty shitty right now.

People keep asking me "how are you doing?" It's a complicated answer so I usually don't go into it. The short version is "ehh. I'm hangin' in there." (Which I am, yes I am, with all my considerable, well-practiced strength.) The long answer is something that is hard to put into words. But words are my friends, so let me try.

With no other "doing" to distract me, I've been flailing around in all the feels for the last few days, especially the negative ones. Anxiety, fear, sadness, disappointment, guilt, dread, irritability, uncertainty, loneliness, melancholy, self-pity, anger, frustration, grief: I boing around from feeling to feeling like a renegade superball escaping a gumball machine. One minute everything is fine, it's business as usual and I'm compartmentalizing and balancing like the pro tightrope walker I usually am; the next minute everything is the opposite of fine, and I'm overwhelmed and over-sensitized to every kind of setback, and pissed off and disappointed that everyone can't see that.

It's taking a lot of energy just to keep any kind of forward momentum going. I'm napping a lot. I'm also talking a lot to people who are good at listening, being gentle and non-judgmental with myself at every opportunity, and practicing gratitude and optimism whenever I can. Next week will be a week full of doctor appointments and tests, which will hopefully result in at least the beginning of a plan of action, but until then, there's this. Just being with all the feels, all the time. Open, open, open.

Fuck this is hard.

It's Yom Kippur today and I've spent most of the day in services, singing and praying, and thinking deep thoughts about how strange and wonderful and awful life can be. One line keeps getting to me and making me tear up (from Misheberach, the prayer for healing): "help me find the courage to make my life a blessing". I don't think I've ever listened to that line as deeply or appreciated it as fully as I did today. Life takes a lot of courage just to keep living it at all as it rockets by and buffets us with change and surprise and joy and sorrow; but to live it well, and in such a way that you can make yourself a blessing to others and to the world, hoo yeah now *that* takes some big, big courage. And practice. Lots of practice.

Here's hoping I have lots more opportunities to practice.

I went to UCSF today to meet with a genetic counselor and give them some blood so they could run a comprehensive genetic test (apparently way more comprehensive than the cheek swab genetic test I had around this time last year, which came back as negative for the BRCA-1 and BRCA-2 genes). The counselor was terrific and I learned a lot (not that I'll remember most of it, but that's ok). The Cancer Center at UCSF also turned out to be pretty impressive and even though I hate the idea that I have to go there at all, the place and the people all felt competent, supportive and reassuring (and very, very professional, in a good way).

The thing about being treated at a major top-notch medical research institution is that they do not f**k around when it comes to applying science to a problem...they not only know what they're doing, they're the ones actually leading the charge in our understanding of how cancer works. So despite being a tiny bit freaked out about hearing all the scary things that they could possibly find in my DNA (for example there was one point where the counselor told me in all seriousness that even though she's not usually prescriptive, if they find one particular gene, she would recommend I get immediately get my ovaries surgically removed), I'm also feeling really good about the fact that I will have a super complete chunk of info once this analysis is done. I think this genetic info could be a big help in the decision-making about treatments that are looming on the horizon. Unfortunately the results will take about a month to get to us, and that means more waiting, but it feels worth it, at least for now.

Science, I love you. Don't ever leave me.

A cancer diagnosis seems to trigger this immediate need in others to DO something, to help, to soothe. Which I totally get, and is well meaning, so therefore appreciated. But there's nothing (yet) to do. There's only this weird new place to BE, where nothing is happening but everything is suddenly, radically different, and it's a threatening and uncomfortable place that most people really don't want to be (hell, *I* don't want to be here). So it's also a lonely place. A place that everyone else can choose whether or not to visit...but not me. I have no choice and no say in the matter. I'm stuck here, until one way or another I'm not. I'm thinking a lot about acceptance and surrender and trying to learn to love this place or at least appreciate whatever perspective it has to offer, but holy Moses it is super challenging, to say the least. (Yes, a challenge I am totally ready for and supported through, and one I am sure I'll conquer, but that's not my point here. So no need for insistent optimism or perky platitudes. I'm way ahead of you.)

And don't tell me everything is going to be okay, because you don't really know either.

I'm (re)learning that cognitive dissonance is a real and serious strain to be reckoned with. Turns out it's an uncomfortable and often exhausting struggle trying to hold two opposing realities simultaneously. Compartmentalization is a good tool but not a full solution.

I went to see a breast surgeon (Dr. Ewing) today. She is based out of UCSF but has a consultation office here in Marin. She was warm and knowledgeable and I like her very much. We discussed the next steps that will hopefully lead over the next few weeks to information that will allow us to make treatment decisions.

Next week I will meet with a radiation oncologist and a genetic counselor at UCSF. The radiation oncologist will give us an informed opinion on whether or not I will be able to undergo any further radiation treatments if needed (the issue here is my lifetime load of radiation, having already undergone 9 weeks of daily radiation treatments for the Hodgkin's back in 1992). If not, then lumpectomy is out because it always has radiation as a complementary treatment. The genetic counselor is because apparently there are additional genes to analyze besides the ones that I already tested for last year (the BRCA-1 and BRCA-2 genes, which I was negative for). Not exactly sure what those results will tell us but Dr. Ewing seemed to think the info would be helpful, so fine, take some blood and let's see.

The step after that is the following week, when I have an MRI scheduled (9/29) and then a follow up with Dr. Ewing at UCSF (10/2) where she and the team review all the test results to date and figure out if there's any others they want to do while I'm there. Then depending on that we'll start talking about treatment plan. What we're trying to do with all the tests etc is to figure out the boundaries of the cancer and where it might have come from (so we know where it might possibly have gone/will want to go in the future).

My understanding at this point is that the favored option would be a lumpectomy (removal of the cancer area(s) and a margin of flesh around it to ensure we get it all) + lymph node biopsy, to then be followed up with prophylactic radiation treatments and hormone therapy to keep it from coming back. (Hormone therapy will put me into early menopause, by the way...sigh. Just what I needed on top of all this, but I'm not gonna argue.) If we can't go that route, then the next question is what kind of mastectomy is advisable given the placement and type of cancer cells we discover. I may even wind up with a two-fer if the tests show the current presence of cancer or the high future possibility of occurrence of more cancer in the other breast (I guess this is part of why we want the genetic test info). I won't know whether chemotherapy is going to be a part of the mix until we know more about where and how large the cancer currently is. I believe that no matter what I'll still get the prophylactic hormone treatments afterwards, so I'm definitely going home with the menopausal door prize. Ugh.

I'm not gonna worry until it's time to worry, but it looks like at minimum I will have some surgery recovery and menopausal symptoms to deal with, and at worst I'm going to have to also replace an entire wardrobe because I'll be going from a G cup to a no cup. And if you were around for last year's "Out of My Closet" challenge you all probably know that means replacing quite a bit of wardrobe....;)

That's all I know at the moment as far as the medical info goes. I'm still ruminating on all the mental/emotional processing this is triggering. More to come on that I'm sure. This is quite a process I've been thrust into/back into here. Yowza.

Life sure seems surreal right now. I'm still processing the burn and all the things that happened there and how I feel about them and what I've realized since, but at the same time I have to keep reminding myself "oh shit, I have cancer. AGAIN." There's a big fat cognitive dissonance wrapped around my brain ("everything is fine/everything is NOT FINE!") and I keep boinging back and forth. I still feel relatively normal (except for this big leftover bruise on my boob from the biopsy), and the usual life hurlyburly keeps on comin' at me without a pause, and I'm still (mostly) able to handle it. But my people are all worried, and therefore I'm spending a lot of time trying to reassure them that I've got this and everything is going to be okay. Which seems a bit backwards. I'm enjoying all the contact and the love beams (even my teenager is being super nice and snuggly), yet I'm NOT happy about the reason for it.

Life is weird. I'm going to go play some handpan now and try not to overthink everything.

I am so humbled and uplifted by the many heartfelt responses to my cancer news from the mix of beautiful people that make up all my many communities. You people seriously give me faith in humanity.

I realized though from some of those lovely responses that perhaps I was being too vague in my original post yesterday, so in my usual spirit of full disclosure (and at the risk of oversharing) please let me clarify a couple of things:

1) What I'm dealing with here is "garden variety" breast cancer (specifically, invasive ductal carcinoma, and even more specifically the hormone positive kind, which is good). Theoretically this is not related or only distantly related to my bout with Hodgkins Disease back in 1992. It was found through a routine mammogram a couple weeks ago, which triggered a follow up mammogram right before I left for Burning Man and then that in turn triggered a biopsy appointment a few days after I returned (boy I'm glad I waited on that!) The biopsy results just came back yesterday.

2) The next step now is lots of tests and consultations and then eventually a decision on best treatment based on all the info we collect. I'll certainly share that info as I get it for those who might be interested.

3) As a philosophical thing I believe in sharing one's journey through tough times and not hiding around cancer. So I'll probably be posting about this a lot. I'll try to put trigger warnings on my cancer posts but if this topic freaks you out or is just not your cuppa tea and you don't want to keep hearing about it, I totally won't hold it against you (or probably even realize) if you unfriend or hide me for awhile.

And for those many lovely souls who keep asking what they can do to help, my only answer at the moment is just keep checking in and showing up. This journey can get lonely or scary at times and attentive friends are always a blessing.

More Articles ...

  1. Bad News
  2. Reflections in the (Carnival of) Mirrors: Burning Man 2015, Part 7 -- Saturday
  3. Reflections in the (Carnival of) Mirrors: Burning Man 2015, Part 8 -- Sunday
  4. Reflections in the (Carnival of) Mirrors: Burning Man 2015, Part 8 – Reflections and Lessons Learned
Page 7 of 14
Load more