The day finally came

Why, yes. Yes, I did wear my sparkliest pumps and sweatshirt to get my first Covid vaccine today. I was feeling extra AF and it seemed the only legit option for attire, really. There was a point last year when I honestly didn’t know if I would make it to the vaccine rollout.

To be so physically vulnerable in the midst of a terrifying pandemic that we understood very little about, well, it’s hard to describe. And it doesn’t take much for those feelings to come flooding back.

The smell of bleach wipes is the smell of fear.

And Jolly Ranchers taste like unending endurance.

But thanks in no small part to my family, I am here.

To Sean who sacrificed four and a half months away from me and our girls to keep me safe; And to my Sister who made her home a second safe home for us this past yearL

You two are the reason I’m able to be here. You’re the reason I was able to wear my sparkliest outfit into the dingy store for my vaccine today.

It was hell. But we did it. And we’ll keep doing it.

I will never be able to thank the two of you enough.

PS - I took the fabulous shoes off as soon as I got back to my car. My God, how did used to wear those things all the time?

The loss of time

Covid has now claimed 400,000 lives and is the leading cause of death in the US. Sean and our family’s story are featured in this story from USA Today.

There’s so much that we’re all going to be grieving from this last year. The loss of loved ones, not being able to comfort each other when someone has passed on, the loss of what we knew as our way of life. It feels like a collective grief over the loss of time.

The article is really good. I think it describes so well the sacrifices of so many frontline workers. And while Sean is typically an incredibly private person, he said he was willing to share his part of our story with the hope that it will convince a few more people to wear masks and get the vaccine.

We’re at the beginning of the end of this pandemic, but we can’t let our guard down now.

Please, please, wear a mask. And get a vaccine as soon as you’re eligible.

We all want more time.

eldsjäl

On New Year’s Eve, I burned it all. It was Sean’s idea and, well, he’s always been a genius.

First I burned the card with the bar code on it that I had to use to check in for radiation. Then I burned the dozens of pages I used to track the output from the damn drains. There were so, so many of them.

And then I found two (TWO!) binders titled “My Cancer Journey” that I was given almost exactly a year ago from the hospital system. These binders were filled with advice like what to eat when you’re on chemo and how cancer can affect your relationships and shit like that and I burned every last page. I never even read them the first time around. And I ended up writing the book on my own damn cancer journey.

The burning of All The Things was even more cathartic than you can imagine. And it was a most perfect ending to 2020.

Of course, not everything will magically be better in 2021. And pinning too many hopes on that is probably dangerous. But I’m sure as hell not sorry to say goodbye to last year. I’m feeling more hopeful that I have in a long time and maybe that precisely because I know now that the phoenix does eventually rise.

I just learned that there’s a word in Swedish: eldsjäl. It means a powerhouse, a driving spirit, a fiery soul. When I heard it, I knew I had found my word for 2021. Now I just have to learn how to properly pronounce it.

Notes from the transition

Reason number 6,453,983 I love my oncologist: she sends me MyChart messages like this AFTER she called me to tell me the results of my CT scans. She ordered them because during follow up we are “very aggressive” following g up on symptoms. And I’ve had this damn cough for almost five months now. 

She told me she thought my cough was still hanging around because the chemo destroyed my esophagus and it takes a long time to heal. It’s not that I didn’t believe her. It’s just that I didn’t believe her. Or at least, I don’t trust the “most likely” explanation because that relies on statistics and we know how I feel about statistics. 

I really had convinced myself that it was lung metastasis that was behind the cough. I suppose it’s understandable. It’s my way of trying to prepare myself for the worst. After this past year, why wouldn’t I want to brace myself?

But it’s not. According to my oncologist, my lungs “look perfect.” I see an ENT on Monday to help me with the most likely explanation for my cough: a battered esophagus and acid reflux. 

She also talked to me about starting a new drug in January that will take the cure rate for my kind of cancer to 93%. It is no doubt a very deliberate choice on her part to talk about cure rate instead of recurrence rate. I love this about her. 

Cancer friends, get you an oncologist who communicates like this. Even when I think I know better, she’s always smarter than me. (I mean, she’s a PhD and MD, so there’s that.)  And she says my lungs are perfect. I guess I’ll have to think about believing her. 

Last day of radiation

The first thing I’ll do is wipe off the damn purple marker. Despite my best efforts, it has persisted. I hate being marked up like a prize hog. But the techs insist it’s required. I already have the tattoos. It’s still unclear to me exactly why the purple marker is required too.

Anyway, today is my last day of radiation. My last day of what I’ve been calling active treatment. I’ll have final reconstruction surgeries in about six months and I’ll have to take a hormone-suppressing drug for at least seven years. But the worst of the treatment is behind me.

So here we are.

After this past year, it all feels rather anti-climactic. There are no scans, no official declaration of remission. I’m not one for participation trophies, but a certificate of completion would be nice.

My oncologist says I’m considered cured after 10 years without recurrence. Maybe by then I’ll have stopped looking over my shoulder wondering if it’s coming back. I doubt it.

Physically, I’m skating in on fumes to this non-existent finish line. The burns from radiation are getting pretty bad. It’s hard to get comfortable and I’m tempted to create a vat of aloe gel to lie in for a week or so.

Going through radiation means you have a favorite aloe vera gel. The “radiation creme” with lavender smells nice but made me itch. The stuff with the MAXIMUM STRENGTH lidocaine doesn’t feel any different from the regular gel but it makes everything sticky. Sticky is bad. The best stuff comes in the samples from the doctor’s office. It’s just right.

As I peeled off a layer of skin that had stuck to my shirt this morning, I thought about my relationship with my Dignity this year. If you were to ask me and my Dignity, we surely would define it as “complicated.”

One of my expanders has flipped upside down (yeah, internally) and I’ve needed Sean’s help to move it back into place. Twice. I of course can’t feel anything in my chest so I can’t do it on my own.

I’ve had a cough since the air quality was bad from the forest fires. My radiation oncologist says that the radiation is delaying my healing. The cough is annoying enough, but ask any mom how terrifying a coughing fit without warning is. (Moms, I know you feel me on this.) I have several of these a day.

Radiation never really got much easier emotionally, either. I had a couple of sessions with one of the techs who was such a breath of fresh air. She couldn’t have been lovelier and I felt compelled to thank her afterward. I ended up crying, I was so relieved.

Turns out she is the supervisor of the team. It led to more than a few conversations with her and my doctor about feeling like my humanity was being lost. Pity the medical team who gets someone who has made a career of giving feedback. It’s been a whole thing. I’m sure I’ll write about it in my book.

But the flip side of all of this is that the experience during radiation has lit a fire and for that, I’m truly grateful.

I’m officially relaunching HRuprise soon and I’ve never been more focused or clear with the vision. Check out the website and let me know what you think.

Onward, indeed.

Finding agency

Whew. It’s been an emotional first few days of radiation. I also hesitated in talking about this, in a way that I haven’t hesitated in a long time. The process has made me feel really vulnerable and I’m still figuring out how to talk about it. But I also learned a really important lesson and that’s definitely worth sharing.

So, the first day of radiation is a dry run. (Monday for me.) It’s exactly what it sounds like - a run-through of the actual radiation treatment. It takes a little longer because they double and triple check every measurement. As you can imagine, they’re incredibly precise. Of course.

I laid there in the correct position without moving because I’m nothing if not an overachiever when it comes to this stuff. I felt myself starting to retreat into my body. I became hyper aware of the movement around me. The three technicians were the model of efficiency. They buzzed around, with all three seeming to be clear and focused on their individual tasks. I started feeling less and less like a person and more like a series of body parts ancillary to their tasks.

There’s something about the assumed position that felt incredibly vulnerable as well. Arms stretched above my head, grabbing on to two bars to keep my hands still. And while I’ve come to accept a much higher degree of nudity with strangers in the medical profession than I ever thought possible, this somehow felt very different. I felt Exposed. In a way I haven’t felt yet, which is pretty remarkable, considering all that I’ve gone through this year.

Then the pens came out.

At least one was a black Sharpie. Another was one of those purple pens they use for surgery that take forever to get off. And they started marking. The buzz of activity continued around me and the kept drawing - the field where the radiation will go, where the sheet of gel goes, marks for reference to make sure I’m in the right position. And it was all too much. I felt a pig being readied for slaughter. It felt like every last bit of my humanity was gone. I couldn’t wait to get out of there and get home to wash it off.

No such luck. “Now, try to keep these markings on for tomorrow so we can double check everything!” one of the techs said to me cheerfully. Another tech said, “We also don’t want you to scrub because it might injure your skin.” I got very quiet on my way back to the room to change out of my gown. I could tell it was making Cheerful Tech uncomfortable. She kept nervous talking all the way back to the changing room. I just nodded. When I got out to my car, I burst into tears.

I talked to Sean. And I went for a walk with Sister down to the lake. And when I still couldn’t stop thinking about it the next day, I decided should probably say something. But I’ve never really done it before with my medical team. But that’s exactly the thing - they didn’t feel like my partners in treatment or in returning to health. And I certainly didn’t feel like I was in the drivers’ seat.

The first official radiation treatment the next day started in much the same way. I assumed the position and the hive of activity around me began. And then that damn Better Midler song came on the speakers. Oh yeah, that one. “The Wind Beneath My Wings.” I hate that damn song. Especially now. And by the way, it makes no damn sense at all. It’s just one of those songs written with the express purpose of making you cry. I resent the hell out of those songs.

Anyway, I cried. I was laying there feeling again like my humanity was being lost and I cried laying on the radiation table with my arms up while the machine swirled around me. No one noticed. I wasn’t even looking for them to notice and come console me. I don’t like that. But it was a sign to me that I definitely needed to say something and now was the time.

So when it was over, I sat up and stayed on the table for a moment.

I said to the team, “I just want to take a minute and tell you what this represents for me. Radiation has so far been really difficult for me. It represents another assault on my body in what has been a year of one after another. I feel incredibly vulnerable when I have to lay like this and I think it’s important for you to know that. Yesterday was incredibly challenging too. Getting all marked up like that made me feel like a piece of meat. I understand that that’s the process, but it feels incredibly dehumanizing. It just felt important for me to say that too.”

To their credit, they listened and told me that they want to hear that feedback. They also asked me to let them know if there was anything they could do to make me feel more comfortable. I told them I would. One of them said she wished she could give me a hug.

I’m glad I said what I did. It’s something before I might have thought about but probably never actually followed through with. I’ve learned that advocating for yourself isn’t always about treatment plans, though that can be a part of it. It can also be quieting that voice that says that says “You’re probably overreacting” and amplifying the voice that says, “It doesn’t matter. Your feelings matter and you deserve to have agency and your humanity acknowledged throughout this process.”

So, I’m off to radiation again. 32 more to go. Maybe by the end of the week, I’ll be able to get through one without crying. One can hope.

The alternative

I start radiation today and I’m all up in my feelings about it. At least in part, it’s because it feels like one more assault on my body that I have to endure. It has been a long, hard year with so many assaults. It has been wearing on me for a while now.

I endured chemo and all the nasty side effects that come along with it, for five months. I used to joke about how my “reward” for enduring all of that was a double mastectomy.

And of course, the surgery had its own complications and surprises. (I really hate surprises now.) The recovery and the God-Awful Drains. I finally moved past those and now here we are: the next big phase of treatment. My final reconstruction surgeries will happen at least six months after radiation is complete. That feels a lifetime away, but I suppose so did radiation at one point.

There’s one thought that keeps coming back to me over and over as I think about all that has transpired over the last year: the price I have to pay to continue to live. It has felt like an incredibly high price at different points. Don’t get me wrong - it beats the alternative (as my Great Grandmother used to say) - and I’m fully willing to do it, but it’s a high price.

I’ve never had to give much thought to what I have to be willing to do in order to keep living. I’ve been incredibly fortunate. And maybe I should have thought about it. In hindsight, I definitely should have. But to me, it seems that the ultimate privilege of life is to be able to take it for granted.

I have a friend who underwent the double mastectomy months before I did. Thankfully she did not have to have chemo or radiation, so she’s moving on with her life now. It’s a different kind of transition out of the fight that I’m currently in. I’m still in the phase where I’m Googling “lung metastasis symptoms” in the middle of the night because I’ve had a cough since the smoke from the forest fires.

She tells me that she has days where she doesn’t think about cancer at all. I have trouble imagining what that’s like, but I hope that those days are ahead, off in a distant future for me.

I’m grateful for modern medicine and that the prognosis for my type of cancer is so good for so many. But I also believe that years from now we’ll look back at this treatment protocol - this chemotherapy that robs you of your dignity in so many ways, this massive and disfiguring surgery, and this radiation that leaves you tired and burned - and we’ll think it was so barbaric. We’ll think of it as akin to bloodletting or using leeches. But it’s the best we have now, and for a huge percentage of people (so I’m told), it works.

“It’s a year (or more) of your life and then you move on,” they say.

And so I begin the last big phase of treatment. It’s the price to pay.

The long goodbye (to drains)

Rest In Peace, Fucking Fanny Pack. I will not miss you even a little bit. Yes, dear friends, I am finally FREE OF ALL DRAINS!!

Nine weeks to the day since my first surgery, the last drain was finally pulled out. My surgeon said that I had the drains in longer than any of her other patients. (Not exactly the kind of record I want to set.) I didn't even reach the magic threshold, either. Had we waited for that, I might literally have been buried with the damn thing in.

So, this means that I'll likely have to go in at least a few times and have the fluid drained manually at the doctor's office. I don't even care.

I had planned to do a ceremonial burning of the fanny pack but I think that might cause some environmental issues, so I think I'll burn the 10+ pages of output logs instead. I also found my notes from my pre-surgery consultation. I wrote that the drains would be in for 7-10 days. LOLs.

Really and truly, I can't tell you how good this feels. I haven't felt like my body has been my own for over two months now. And no more delays for radiation.

Finally. Onward.

Sun’s out, drain’s out

I AM DOWN ONE DRAIN AND I FEEL VERY SHOUTY ABOUT IT

After 8 weeks, I finally got rid of one of the drains. Fucking finally. I do fear that I will have to be buried with the other one, but let’s tackle one thing at a time, shall we?

The drains have to drop below a certain output for two days in a row (30 ccs, to be exact). It will likely be at least another couple of weeks before the other one is even close. I’m not above leveraging the pity that the nurses and my plastic surgeon are starting to feel for me, either. If it comes to that, I’ll do whatever I have to. To say I’m over it doesn’t even begin to describe it.

And yesterday when I called the plastic surgeon’s office to see if they could fit me in, I played a really stupid day-long game of phone tag with the nurse (my surgeon is out of town this week, so of course that’s when I finally reach the threshold). I mentioned that the drain had started leaking right where the tubing attached to my side. (I know, as if having to deal with them for this long isn’t bad enough.) When she called back, she mentioned that it could be a sign that the tubing was plugged and she might be reluctant to pull it out.

I lost my shit.

It was fine. If I know anything, I know about my body and, for better or worse, I’m hyper aware of everything having to do with it right now. I hit the threshold before the leaking started, and quite frankly, there was no way I wasn’t getting it out. It all worked out.

So, I was supposed to start radiation last week.

The first appointment is what they call the “planning” session. They map out exactly where you’ll receive the radiation and what position your arms will be in so that it is exactly the same for all 33 treatments. They even give you small tattoos to help with the positioning. I’m suddenly regretful that this will be my first tattoo. I had hoped for something a lot more exciting.

Heavy sigh, 33 treatments. Every day for about 6 and a half weeks.

I’m ready to get going with radiation, not because it will be so fun, but because I want to be done with it.

The reason for the delay? The drains, of course. Can’t have radiation with that plastic still in there. My radiation oncologist assures me that we’re still within the timeline and that there’s no additional risk by having to delay radiation by another couple of weeks. I, of course, cried when she said that and then I think she didn’t know what to do with me. The tears flow easily these days. I’m not sorry about that.

It has been a real struggle these last few weeks. I’m incredibly fortunate to have a lot of tools for support - family support, therapy, coaching sessions, anti-depressants, prescription sleep aids, walks outside now that the weather and air quality are better, and still more Netflix.

More than anything, I’m trying to give myself a lot of grace. If all I can muster is a day on the couch, I try to let that be okay. I am still supposed to be resting, even if I hate that. I also do what I can to make sure I don’t have too many of those days in a row.

Sean and the girls gave me a honey badger stuffed animal before my surgery. I’ve been thinking a lot about it over the past few weeks. Do you remember the viral videos from a few years ago? To start, the name “honey badger” is completely misleading. It’s the baddest ass of the animal kingdom. The honey badger is impervious to even the deadliest snake venom. If it’s bitten by a puff adder, it basically takes the hit, takes a nap, and then gets right back to its business a few hours later.

So obviously, the honey badger is my new mascot. I even got the shirt.

Port eviction

Yes, I still have the drains. I don’t want to talk about it.

But there is cause for celebration this week. I saw my oncologist and she ordered my port to be taken out. This was big news for a few reasons. It means I definitively don’t have to have any more chemo, and I get to evict at least one of my constant companions. (The drains are next, but we’re not talking about them.) To be clear, exactly no one has even raised the possibility of more chemo, but I don’t know, I find myself still steeling myself against the worst possibilities.

On that note, I had to ask my oncologist if a “cure” was still the aim and within reach. The need for my second surgery caught me off guard and I started to wonder whether I was going to need to worry forever about more tiny spots of cancer cells in places I had never considered before. My oncologist looked me in the eye and said, “A cure is still the most likely outcome for you.” I cried and loved her all over again.

So, I got my port out. It felt really symbolic because the port was the first physical sign I had of the treatment that was to come. I honestly hated the feel of it on my chest and up in my neck. But I am also really glad to have had it, if I had to go through 20 weeks of chemo, which I did. Sixteen times, I had blood drawn and chemo administered through the port. I sucked on Jolly Ranchers to mask the taste from the saline flushes and I iced it on treatment days because it always got bruised. It served a great purpose. And I’m so glad to be moving on from it.

Other cause for celebration? My hair is really starting to grow back. It feels really soft. The girls say my head feels like our cat Sydney’s fur. I almost look like I have a stylish pixie. Almost. The young woman who brought me my grocery pickup order at Safeway said, “Oh! You got a new hairstyle! I like it.” I must have been wearing a wig before. But I appreciated the thought, even if she made me wait 30 minutes for the grocery order.

So, now I’m headed back to my Netflix. I’m completely into all British reality competition shows, including the Great British Bakeoff, and I realize I’m super late to the game with this one. Someone tell me, is his real name Paul Hollywood? Because there’s nothing better than a guy with thinly veiled contempt for everything American (baking, anyway) who is named Paul Hollywood. And no one told me how many inappropriate jokes they make on this show and I am. Here. For. It. Those saucy kittens.

(Even) more rest

On my way back from my latest doctor’s appointment, Sean called and said “You should go out and not come home for a while. I’ve got the girls. You’ve been feeling like a bump on a log at home, so maybe you should go sit on a real log and rest.” So that’s what I did. And marked Reason #653,976 in my diary for why I love him.

The resting is harder than I anticipated. I’m not even trying to train for a marathon. I just want to be able to do more than sit in “the comfy spot” on the couch and get the passive aggressive “Are you still watching?” message from Netflix three times. So rude.

Almost five weeks after surgery, I still have the drains in. This is an abnormally long time compared to most, but it’s not alarming, apparently. For some people it just takes longer. I hate the drains. Like, with the passion of a thousand fiery suns. At the plastic surgeon’s office this week, the perky nurse said “Ooh, I like your fanny pack! It’s so cute.” (It, of course, holds the drains.) I just looked her straight in the eye and said, “I hate the fucking fanny pack.”

The best way to get to the output low enough to get the drains out is to move less. Less! The major life lesson here isn’t hard to parse out, but honesty, I’m just so over it.

So, I did go find a real log to be a bump on. And I closed my eyes. And listened to the waves. And breathed the wind. And lifted my face toward the sun. I added a few tears to the ocean too. I remind myself that I won’t always feel this way.

The road is so long and the Darkness likes to tell me that this feeling will last forever. But the wind and the sun and the earth tell me otherwise. I will trust them more.

The healing process

I’ve been spending all my time and energy on healing these days. This has been incredibly grueling, physically. And yet at the same time, I’m starting to go a bit stir crazy with all the sitting and laying around. Need a recommendation on shows to binge watch? I’m your girl.

I’m incredibly grateful to finally be free of the leg pain. It stuck around for a little over a week and made me pretty damn miserable. But it’s finally gone and it feels like a new lease on life, even as new pains set in.

The second surgery went very well. It was a much easier process in so many ways, but for some reason, I was way more anxious heading in to this one. I didn’t know what to expect with the anesthesia. I wouldn’t be under general anesthesia but how much would I be aware of? I was still feeling really ambivalent about having to do the surgery anyway.

This was another opportunity for me to be much more vocal about my needs than I might have been in the past. I knew I would get an opportunity to talk to the anesthesiologist before the surgery. After he went through his spiel about what anesthesia he would use and asking me questions about my prior experience with it, he asked if I had any questions. I told him that I was feeling pretty anxious.

“I can help you with that!” he said with an incredibly reassuring confidence. He told me that I would be heavily sedated, meaning I would be in a deep sleep, but able to breathe on my own. “I will be right by your head the whole time,” he said. I began to relax a bit.

The nurse who arrived to walk me to the operating room was the same nurse for my mastectomy. She remembered me.

And then I got to the operating room and my surgeon held my hand again as I went to sleep. It is truly the most beautiful gesture.

Fast forward: the pathology report has already come back and it’s clean. It’s good news. I won’t dwell on whether that means that it was an unnecessary surgery after all. There would be no way of knowing without doing the surgery. When my surgeon called to give me the results of the pathology report, she said, “I’m sorry for your loss.” I smiled and thought that might just be the best thing she could have said.

Back to healing.

Tumor Board update

Thank you so much for the messages and for sending positive thoughts and energy our way. I wanted clarity and that’s what we got.

The recommendations from the tumor board were a strong consensus on both questions.

First up is the big news: No axillary dissection. This is HUGE and the one outcome I was worried about the most. It would have been another fairly intense surgery and carried pretty significant long-term implications. But it’s not recommended. “Radiation instead of axillary dissection” was the official recommendation. Radiation was part of the treatment plan all along, even though I did have a small hope some time ago that radiation might not be necessary. But that really was just my own wishful thinking. If given the choice, radiation is much preferred. (And that’s a phrase I never imagined myself uttering.)

The second question was about the nipple removal, which is recommended. I’m not thrilled about this prospect, but I understand the rationale. They consider the risk of recurrence too great when you weigh it against something that is considered “cosmetic” at this point. Though I think maybe I would use a different word than cosmetic. I get it - there is less function now that I’m past breastfeeding and less utility to the body’s functioning than say, my lymph nodes. But nipples are also way more than a really good eyeliner.

Regardless, I’m coming to terms with it. My surgeon said that if I have a recurrence five years down the road that originated from here, I would regret not having made the decision now. I suppose that’s true, but again with the series of shitty options. The good news is that this surgery is pretty “easy” (as these things go, anyway). I’ll go home the same day and they won’t even need to use general anesthesia.

My biggest issue for me right now is the muscle pain in my legs. Five days later, I still feel like I ran the half marathon with no training. It hasn’t gotten any better. I never want to be the person to stump the doctors but here we are. The current theory is that I’m having a rare reaction to the second antibiotic I’m on. (Which we switched to because of the bone pain.) So, here’s to hoping for antibiotic #3 and some kind of relief from the pain. Also, while I’m putting my requests out in the universe, maybe not a new pain with antibiotic #3.

One last note before I go: For the first time in a long time, I went back and forth trying to decide whether/how much I should share. Isn’t it weird to talk about your nipples where strangers could read it? Or maybe worse, people you know?? The answer is yes. It totally is.

But it also isn’t. When I was first diagnosed, the first thing I did was start looking online. I was looking for the stories. I soaked up the stories that I found. They made a huge difference for me to be able to visualize some of what was coming. They still do. Whether they are blogs I have found or Instagram accounts I follow, the stories that resonate the most for me are the most honest. Especially when it comes to how cancer treatment affects the body in a million different ways. This ultramarathon experience is a physical and mental challenge like no other.

The last eight months my world has revolved around my boobs in one way or another. If I’m going to be honest, I’m going to be honest about the whole experience.

So there you go. I reserve the right to talk about my nipples on occasion.

Possibly more surgery

Did it seem like that last post ended a little abruptly? Well, apparently I didn’t hit Save on that last post, but I hit “Save and Publish” instead. That’s a fun discovery!

Where were we? Ah, yes. The pathology report. Like I said, overall the report showed good response to the chemo. Now to the outstanding questions.

When I was in the OR, all four lymph nodes that were removed tested negative for malignancy. But in the final pathology report, one of the lymph nodes tested positive. It’s the original lymph node that we’ve known about all along. It is the only lymph node that has tested positive in any of the tests I’ve had. My surgeon warned me about this as a possibility - the biopsies done in the OR have a 10% false negative rate.

The normal protocol (they call it “standard of care”) in this case is to go back in and have an axillary dissection. It would be a huge disappointment, but I’ve also known this was a possibility all along. Since I’ll be doing radiation and hormone therapy (plus the fact that no other lymph nodes are involved), my surgeon is open to not doing the axillary dissection. So she plans to take the question to the tumor board.

A quick interlude for a moment regarding the tumor boards: This is where a whole host of oncologists and specialists get together and review the case. They will even look at the tissue samples and then they make recommendations for treatment options.

Just after my diagnosis, my oncologist took my case to the tumor board as well. I’m incredibly grateful for a group of ridiculously smart people reviewing my case. I’m also very much looking forward to the day that I become boring again to my doctors.

Back to the outstanding questions. The pathology report also showed one incredibly tiny area (0.5mm to be exact) with malignancy just under my right nipple. Same story with the lymph nodes - typically the standard of care would be to go back and remove the nipple. But in this case, the sample taken had really clean margins basically the rest of the tissue in that surrounding area is gone. She’s taking the question of whether surgery is necessary in this case (or not) to the tumor board as well.

Of course, I’m not wild about needing any more surgery. The recovery has been so much more challenging than I expected. Two weeks after surgery, my entire body aches right now like I ran a half marathon without training. (I distinctly know this pain as I did that a few times before kids when I was younger and stupider and in much better shape. Also, yes, that was a humble brag but let me have it because I highly doubt I’ll ever be able to do it again.)

I absolutely hate having to take narcotics for pain because they cause all kinds of other issues. Seriously friends, never again underestimate the value of a good poop. I’m deadly serious.

But I don’t want to make the decision based on my short-term pain and discomfort. These are long-term questions to ask myself.

The big question from my surgeon was this: if the tumor board comes back with the recommendation of not doing the surgeries, how will I feel about the potential risk long-term? It’s nearly impossible for them to quantify what the risk might be. It’s why they typically recommend surgery and removal. But there’s also so much about cancer that is complicated and that they don’t know. There aren’t any studies to tell us about the long-term risk change (if any) for not doing the surgeries.

There’s also this: There is no way to reduce my risk of recurrence to zero. I’ve been sitting with this fact for a while. I still wouldn’t say that I’m comfortable with, but I’m learning to sit with it. I have a chair reserved.

Ultimately, this will be my call to make. At this point, I see myself relying heavily on the recommendation of the board, of course. But I’m also thinking long and hard about the quality of life issues present here too. If I am going to have those 60 years my oncologist talked about, I want them to be active and as healthy as possible.

The tumor board is tomorrow (Wednesday). If surgery for the lymph nodes if the course of action, it will likely happen within a week. So things could move pretty quickly.

If you think of me, please send thoughts for clarity and confidence in the decisions.

Post-surgery recovery

A friend told me that the recovery path post-surgery is not a linear one. When she told me that, I assumed she meant how I would feel physically. So when I was still feeling pretty good around 5 days post-surgery, I started to think maybe I had been really lucky. I had moved to just taking Advil and Tylenol pretty quickly and I was able to move much better than I expected. I walked quite a bit and it felt really good to get outside.

Then the leg pain began. Yeah, legs. Nowhere near my surgery site. It reminded me a lot of the bone pain I experienced during chemo. It was an intense, deep, dull ache. This was more intense than the chemo bone pain.

Of course, none of the nurses or doctors have heard of this kind of thing happening post-surgery before. My oncologist thinks it’s unlikely that it’s still a side effect of chemo. It’s been too long since I finished.

I ended up going to the ED to get some tests. The good news is that all the labs and tests looked good. Totally normal. So we could rule out all the “scary stuff” like cancer in my bones or a blood clot. The current theory is that I was having a bad reaction to the antibiotic I was taking.

A few days after stopping the antibiotic, the bone pain is gone. I’m now really sore in the muscles in my legs and torso from compensating for the pain. The muscle pain feels different and hopefully will subside soon. It has been a rollercoaster of a week.

The final pathology report came back.

It looked mostly good, with a couple of outstanding questions. The pathology report showed a significant response to chemo. The original tumor and satellite spots had reduced significantly.

Post-surgery update

Hey all. It’s me.

My surgeon held my hand as I went under the anesthesia. I didn’t ask and I wasn’t even particularly nervous at that moment, but I will never forget that. I had already summoned my family members who have passed on to help me through the surgery. I never imagined they would figure out a way to actually physically hold my hand. It was a moment of such beauty.

I‘ve been home for a few days now. Still trying to figure out the right combo of All The Meds. If I lay still, I don’t have much pain at all. If I move at all, I’m very sore, as you might imagine. So, I’m doing my best impression of a bump on a log now that I’m home.

I’m incredibly grateful to be able to have family close by to help out. The girls give me a “gentle hug” every time they walk by me.

Thank you so much for all the love, prayers, good thoughts, healing energy, and well wishes this week. I felt it. Still do.

The surgery went as well as we could have hoped so far. Waiting for final word on pathology, which will probably come next week.

Now back to bump on a log status …

Surgery Update

Sean here. I’ve hijacked Rebecca’s blog (at her request) to give you an update. I’ve spoken with both of her surgeons. Overall her surgery went very well. They removed 4-5 lymph nodes, none of which showed preliminary evidence of cancer. Based on these initial results, no need for a axillary node dissection at this time. Of course the final results won’t be back for a few days but this was a great hurdle to clear. Neo-Adjuvant Chemotherapy: 1; Lymph Node Metastasis: 0. She’s moving from the PACU to her room as I type and I hope to see her soon (dumb COVID-19). Hopefully she’ll fell up to updating you all herself in the next few days.

Surgery tomorrow (Tuesday)

I took this picture on my weekend away. It was a few weeks ago and two whole nights by myself were glorious. Glorious, I tell you.

I wrote and I wrote. I guess I just had to be really still for the words to come. They came in droves.

I had a room right on the lake and I listened to the waves hit the shore. Water is so healing. I breathed in the trees and the sunsets.

At that point, I was just coming out of a fog. (I still am in some ways.) I had started to worry that I hadn’t had a big cry in a while and was afraid for what that meant. I worried that I had been stuffing my feelings down more than I realized. I really was in survival mode for the past five months. It was necessary and we did survive. And, in fact, I think the girls and I did more than just survive. I keep using the hashtag #futuresurvivor on Instagram. I suppose I’m a #currentsurvivor too.

One of the nights, I watched a Ken Burns documentary on cancer. (It’s excellent, as you would expect from Ken Burns.) I guess it was my way of trying to force the emotional release. It didn’t really do that for me, but it did something else much deeper: It helped me feel much more connected to this experience of cancer and to the millions of people who have been diagnosed with cancer. Some stories have great endings, with amazing breakthroughs in treatment. And also far too many of the stories have tragic endings.

But I’m no longer afraid to hear those stories. I can bear witness to those stories in a different way. Just like my conversations with fellow cancer survivors feel different on a cellular level, it feels like a sacred task for me to show up to hear those stories. And see parts of my own story in theirs.

The big cry came a week or so later. The timing on that can’t be rushed either, apparently. All things in due time.

So, tomorrow (Tuesday) is the surgery.

The plan all along was to have a double mastectomy, regardless of how well the chemo worked. There were “satellite spots” in the original MRI and short of doing a biopsy on every single one (nearly impossible) there’s no way to know whether some/any/none were cancerous. So, the surgeon recommended a unilateral (single) mastectomy.

I’m opting for a double mastectomy. Even though, it doesn’t statistically reduce my risk of recurrence, it was a pretty clear choice for me from the beginning. If I stuck with the single mastectomy, I would have either an ultrasound or an MRI every six months for the rest of my life on the side that remained. The tests themselves are no big deal (remember, I know how to do my own nose piercing now?) but waiting for the results is torture since my diagnosis. I don’t want to live with that every six months for the rest of my life. I still hold out hope that there will be a day in which cancer, treating it, or fighting it, is not top of mind all the time.

But, here’s the part where the chemo working really well becomes really significant: we know that the cancer spread to one of my lymph nodes. Had I had surgery first, they would have had to take all the lymph nodes out on that side. Now, because the chemo appears to have worked really well, they will do a biopsy on that lymph node in the operating room. If the pathology report is clear, the surgeon will only have to take a few lymph nodes from that side. So, if you think of me tomorrow, send good thoughts for clear results with the lymph nodes.

My treatment plan involves radiation beginning about 4-6 weeks after surgery, assuming the healing goes well. Because of this, I won’t be able to have reconstruction done immediately. They will put expanders in at the time of surgery, which will be filled over time. (As much as possible before radiation begins.) Radiation can do a lot of damage to the tissue in that area, so the final reconstruction surgery will happen about six months after radiation is complete.

I’m still feeling pretty ambivalent about the surgery. It is what is needed to ultimately give me the best long-term survival rate. A necessary evil, if you will. But I’m still also mourning a lot of what I will lose: I will likely lose most feeling in my chest, probably forever. I’m thinking a lot about what it will feel like to have foreign objects attached to me forever. Damn, I don’t even like having the port in because it feels like a foreign object.

Will hugs ever feel the same again? Probably not. And that makes me sad.

I’m also ready to do this and get to the healing part. I’m listening to the stories of my friends who have been through this before. I’m assured that the grieving will pass. I trust that it will.

Last night a group of my closest family and friends gathered in what we called it my Boob Voyage. It was going to be my farewell party to my boobs. What it ended up being was a group of amazing women showing up for me in the most amazing way. They filled me up with stories and laughter and it was exactly what I needed.

I’m convinced that this whole life experience is about nothing more or less than how we show up for each other.

Words aren’t adequate to express my gratitude for how many people - that I know and that I don’t - who are thinking about me, praying for me, sending their healing thoughts. It is truly overwhelming. Thank you so much. Please continue to do so.

Sean will post an update here after the surgery.

Love you all. Onward.

Feel It On The First

Have I told you how this whole thing got started? It wasn’t on a regular mammogram. In fact, I wasn’t supposed to have my first one for another four years. I found the lump myself.

I wish I could tell you that I had been religiously doing my self-exams like I know I am supposed to do. But it wasn’t. I didn’t do them. I sort of found the lump by accident. I was watching TV and my bra had been irritating me. When I took it off, I found the lump. And I distinctly remember thinking to myself, “How did this lump get this big without me noticing?”

Never again, ladies. I know it’s hard to remember. The likelihood seems so remote of something ever going wrong. It is. But it’s so critically important to do this. So here’s an easy way to remember to do your breast self-exams: Feel It On The First.

More than anything, get to know your own body. Every inch of it. And then you’ll know if something is off. Do it for me. More importantly, do it for yourself.

Love you all.

Image: instagram.com/breastfriendspdx

Jolly Ranchers

This period of my life tastes like Jolly Ranchers. I probably won’t ever be able to eat them again.

One of the first real physical signs that shit was getting real after my diagnosis was having to have a port placed in my chest. I had to go the hospital where an interventional radiologist used conscious sedation in the operating room to implant a device where I would receive my chemo infusions and have blood drawn. Honestly, it seems ridiculous now as I think about it, but I really had imagined something akin to the top of one of the kids’ applesauce pouches sticking out from my chest. So, it was nowhere near that, a lot less noticeable than I thought it would be, but I still hated it from the very beginning. I can feel it. I don’t like the feeling.

But, compared to the alternative, it’s certainly better. It saves you from having to be stuck dozens of times and the chemo drugs I was on are vesicants, which means that they cause the tissue to blister and die if not appropriately administered. (Remember the “figure out what will kill me and back it off a little”? Yeah, that.)

Sigh. After the diagnosis, so much of this process has felt like having to choose between two shitty options. Not even the lesser of two evils - just two shitty options.

So anyway, back to the Jolly Ranchers. Whenever they “flush the port” which involves a bunch of saline, I get a metallic taste in my mouth. I don’t understand how it even works but it weirds me out. So I started taking Jolly Ranchers with me to try to drown out the taste. It works. Mostly.

I had my follow up appointment with my oncologist today. I brought the Jolly Ranchers again. It was the last time I’ll do blood work with my port (we hope*). As I turned into the parking lot, my stomach starting doing flips. Ah yes, we remember how this usually goes at this particular building - the Cancer Institute. I’m still coming to terms with being a cancer patient. That title hasn’t worked its way into my identity yet.

All the bloodwork looked great. It was jarring to see everything return to normal normal (not just the extremely low end of normal) in just a few weeks. Now on to surgery next week. I’m feeling some major trepidation about this particular surgery. I know it’s necessary, but I’m not thrilled about it. More shitty options.

* I say “we hope” because, although the scans have been very encouraging so far, we won’t know for sure how well the chemo worked until the pathology report after surgery comes back. So I don’t even get to have my port out until a month or so after surgery. “Just in case.”

The “just in case” is just in case there was a bunch of cancer left behind that didn’t show up on the scans and I have to do chemo again after surgery. The odds are really long of that happening - we have every indication that it worked so far. But as you know, I don’t trust statistics anymore.