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thisisnotreallife · 4 days ago

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The Cancer Journals, Part XIV:

How to Help a Loved One (or Stranger!)

This week, I start the final drug for my endocrine therapy cocktail. I found out on Friday that the drug, ribociclib, causes hair loss—and that I can’t eat any grapefruit or pomegranate for the entire time I’m taking it, which we expect to be five years.

So.

So today I made a grapefruit cake, and I’ve been chugging my favorite grapefruit bubbly water while I can.

I plan to get myself a paloma before I’m no longer allowed and have a grapefruit for breakfast each morning until I start the medication, too.

Honestly, I feel compelled to ask a medical professional if I need to wait for the grapefruit to flush out of my system before I start the ribo Rx, I’ve had so much of it…

It’s a good thing it’s not pomegranate season!

The grapefruit & pomegranate moratorium is—unfortunately—a hard and fast no. The fruits have something in them (an enzyme, I believe the oral chemotherapy nurse said) that binds to something in the drug, making it difficult for the body to process it properly and leading to a build-up, which can ultimately cause things like liver toxicity.

I let myself be bummed out for about a day and a half, and then I had to admit that having a zero-tolerance policy on grapefruit and pomegranate for the next five years is better than both liver toxicity and a breast cancer recurrence.

So, we take the ribociclib.

And we look forward to a grapefruit and a pomegranate party in five years.

Anyway, as promised, I wanted to wrap up this chapter of my cancer meander not with a grand statement on having and undergoing treatment for breast cancer, but rather with a more practical piece of writing.

When people get sick, or when people experience a death or similar world-shifting event that shakes their foundation, friends and family are quick to tell the afflicted to let them know how they can help.

It’s a wonderful offer—well-intentioned and usually quite genuine.

But the thing is, people who are struggling aren’t thinking clearly about when to ask for help, or whom to ask, or for what.

They just feel overwhelmed—by the illness or the loss and the way that the world just keeps on turning and the bills show up in the mailbox and the fridge keeps getting empty even though they keep going to the store and getting food over and over again and the laundry and the dishes pile up and they still have to get their work done. And shower, too!

So.

So, I thought I would pull together a list of the ways that Patrick and I were supported by our loved ones since we first shared my diagnosis last summer.

If you’re reading this, you likely show up somewhere in the list below, though I didn’t include specific names.

So, thank you for that. Of course. 🫶🏻

My oldest sister and her family came over for a ½ day just before my first round of chemo and knocked out a massive list of things I’d written up that Patrick and I hadn’t been able to get around to around the house since my diagnosis five weeks earlier.

· My other sister sent soup and mac and cheese and chocolate chip cookies for Patrick and me to have the weekend after my first round of chemo.

· My colleagues and boss sent fresh groceries delivered to our home just before round 3 of chemo.

· Local friends brought us a homemade meal of carnitas just after the first round of chemo.

· Another friend made our Meal Train site for us, which allowed folks to send donations or sign up to send food.

· My sister signed us up for a meal kit delivery service that we were able to turn on and off based on our needs.

· My sister also set up a GoFundMe, which allowed people to donate directly to us. We were able to use these funds on medical costs not covered by health insurance (I was spending probably $200 extra a month on supplements my oncology team wanted me on based on my bloodwork and best practices for cancer patients!) and for takeout when I didn’t know what I wanted to eat until I needed to eat immediately after chemo rounds.

· My sisters also helped with administrative tasks that I delegated to them when I just couldn’t do it myself and didn’t want to burden Patrick on top of him caring for me and working, both full-time—like when I needed an immediate and highly effective birth control method as soon as possible after my diagnosis so that I didn’t get pregnant before cancer treatment started, and my oldest sister called Planned Parenthood to schedule the appointment on my behalf.

· My mother-in-law asked her friends—most of whom are strangers to me—to send me birthday cards before my birthday in September. Some of them continued to send them on through the holidays, too. One included a drawing by a little 5-year-old girl who wanted to send her love; it is currently on the fridge (obviously).

· My boss sent a seatbelt pillow for the car before my port surgery, before I even realized I’d need it.

· A friend sent a Tupperware of homemade cookies and a book of poems along with a sweet card that I have framed.

· Another friend sent me a care package before my first chemo round and included items that showed she had done research on what might be helpful for a breast cancer patient, like scar cream and wooden utensils in case metal ones tasted gross post-chemo. So thoughtful!

· Another friend whom I got to see just after my port surgery gave me a little totem that we call Whimsy Frog, who traveled with me to every chemo round I had to go through.

· My sister brought me rocks she gathered and polished from shorelines and riverbanks around the Pacific Northwest whenever she visited, and I carried them with me in my pockets and have them placed around my house, for luck.

· A friend sent the most beautiful and healing care package, filled with the crystal that I took with me to each round of radiation, a necklace she had worn herself through many trials she walked through, and a clear glass frog that now sits in our living room.

· Another friend sent a cozy scarf and a pack of socks with a cat on them and some tea and sweet little bookmarks to cheer me up and keep me comfortable after my last round of chemo.

· Another friend who was diagnosed with the same kind of breast cancer five years ago sent me a sweet coffee mug and a cozy blanket and some “Fuck cancer” cat socks.

· The mother of a friend of ours from graduate school whom we lived with in Seattle a decade ago sent “comfort pillows” specifically designed by a breast cancer survivor she knows who runs a nonprofit providing support for breast cancer survivors and patients in the western Massachusetts area, along with several other sweet items.

· My sister found and sent the most perfect post-mastectomy support kit that included pillows and drainage bags and other sweet and thoughtful items that made the days following my mastectomy much, much easier.

· One of my mother-in-law’s friends, also a breast cancer survivor, sent a hand-crocheted prayer shawl and two hats she made for me, along with a book of letters written to women with breast cancer that she said brought her much comfort during her own cancer meander. We’ve never met, but she was so caring and thoughtful.

· Another friend sent me an email that meant so much I printed it off and stuck it above my desk so that I would see it every day.

· My oldest niece watched TikTok and YouTube videos so she would be able to help me put on my wigs. She also bought me some of the cutest hats I’ve ever seen.

· Anonymous little treats also came in the mail from time to time, from “Suck it, Cancer!” chapsticks that I have stashed all around the house for use to a 2lb bag of coffee beans.

· I received many beautiful flowers deliveries from friends and family after diagnosis, following my first chemo and my last chemo and in-between rounds “just because,” and post-surgery. Flowers were always, always appreciated.

· My sister sent a basket of living plants after my mastectomy, and it felt so wonderful to come home to alive things.

· Online support in the form of likes and comments was always also so appreciated. It might sound cheesy, I know, but each one meant a lot to me and each one still does.

· One of my sisters came to stay with us a few days after my mastectomy. It was nice for Patrick to not have to stop what he was doing every time I needed a glass of water or a snack, since I could ask my sister for her help, too.

· When my sister visited after my mastectomy, her best friend drove down from Seattle and stayed here for a couple nights, too. She had done some research on the best foods for post-surgical recovery and made a protein-packed loaf of banana bread and a protein-packed chicken sausage and tortellini and vegetable soup that we survived on for a few days. Before she left, she and my sister cleaned our house for us and did our laundry. What?! If you don’t live nearby and can’t travel to help a loved one in person, if you can afford to set up a laundry service for pick up and drop off or a cleaning service to come regularly to take care of basic housekeeping and occasional deep cleaning needs, those services would be incredibly helpful during a time of need.

I’m sure that I’ve forgotten something. We received so many wonderful gifts and acts of kindness and support that I couldn’t possibly list every one of the wonderful things that friends and family did for us.

What helped Patrick and I the most over the last six months was people taking the time to send a message of support or to do some research to figure out how they could help in other ways. It was people following through on those offers for help in tangible ways—and in intangible ways, too. It was not having to say “we need some help,” because—of course, absolutely—anyone dealing with cancer does. Always.

In any case, the point is, I’m compiling all of these acts of love and care in the hopes that the next time one of your loved ones receives a scary diagnosis or loses a loved one or otherwise needs your love and support, you don’t need to ask how to help.

I hope that, instead, you can show up—unannounced or with due warning, depending on your relationship—with a homemade, nutritionally-appropriate meal and do a load of laundry.

Or send a bouquet of flowers and a pair of cozy socks.

Or a message of love and encouragement or commiseration that your friend or sister or nephew can hold in their heart when things feel especially tough.

#writing #puttinghereforposterity

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thisisnotreallife · 4 days ago

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The Cancer Journals, Part XIII:

Rads Reflections, Endocrine Therapy, & Next Steps

My course of radiation therapy ended this past Monday, which means I can officially say I am finished with active cancer treatment��and as they say in the oncology business, I have no evidence of disease.

Cancer-free, as I’ll ever be! 🥳

Even though I am beginning endocrine therapy this week (more on that momentarily), this stage of my cancer meander is to ensure that we lower the risk of recurrence as much as possible—and so, at the end of my sixteenth round of radiation Monday, I got to ring that dang bell.

*And* they gave me a certificate, to boot, which is currently hanging on our fridge. Obviously.

I was more than a little displeased when I learned in November that I would need radiation, but thankfully, the worst part for me turned out to be the daily appointments, just like a friend of mine who’s gone through radiation said it would be. And it’s only a twenty-minute drive to my oncology center for us; I feel for the folks who live an hour or more away and still have to make those daily appointments.

I’m lucky, too, to have had a short radiation course—some other cancers require daily appointments for much longer—and to have only required radiation on my right breast and armpit. In the middle of my course, the radiation machine malfunctioned and all of the patients at my center had to travel to the Portland location. Some of the patients had to take their own “gear” for radiation, which I got to see as we shuffled around the little waiting area: plastic cages that fit over the patient’s head or head and shoulders and get bolted to the table, to keep the patient completely motionless for radiation to the head and neck areas. It looked like a torture device, frankly, and I’m grateful all I had to do was hold my arms above my head, fitted into the kinda hard cushion the techs made me back at the simulation before I started.

As for side effects, I certainly experienced the fatigue I was told would happen, but staying active was helpful—even just doing light housework was enough to stave off the sleepy, which was not possible when I had chemo fatigue. And I think my right armpit is both sweating less and growing hair more sparsely. Otherwise, though, my skin wasn’t majorly affected during the course of radiation, aside from some increased sensitivity.

One surprise: skin irritation occurs not only on the area where the radiation beam is entering your body, but also where the radiation beam exits.

Yikes.

Unfortunately, I didn’t know this before I started, and so I was late to begin slathering on aloe and calendula and Aquaphor on my upper back and neck. To help prevent skin irritation, you are supposed to start using the lotions and creams prior to seeing any irritation occur, and so now, I do have some redness and red dots on the exit areas on the back of my neck and upper back on the right side. And as of yesterday, it’s starting to feel a bit rough, like lizard skin. 🦎

On my front, my scars are a bit reddish and the skin on the right side gets redder more easily when I am flushed or hot (and this happens a lot. Thanks, medically induced menopause!). Today, I noticed that there is a patch of skin on my breast that looks a bit speckled with redness developing. This is normal, for the skin-related side effects to be somewhat delayed after the course of radiation ends—just another reminder that even when you think you’re done with cancer, you’re never actually done with cancer. I’m still using my twice daily regimen for now; my radiation oncologist said to keep it up for 7-10 days after radiation ends.

Side effects, daily appointments, and the simple fact that I was there for cancer treatment aside, the radiation therapists who work with Dr. Siddiqui and who set me up on the table and turn on the rays each day were wonderful: compassionate, professional, and funny, too (all very important while making small talk and making sure my nipple is positioned exactly where it needs to be at the same time). We chatted books, which I was always carrying with me, and holiday plans. They complimented the bottom half of my outfits regularly and let me take pictures of the radiation machine and room. They made what could have been a very unpleasant experience more than bearable, and I’m grateful for that.

In fact, that’s something I’ve been grateful for every step of the way along this unexpected cancer meander. From friends and family to the oncology center where I get my care and its staff to the strangers my mother-in-law enlisted to send me dozens of birthday cards to my extremely dedicated and exceptional caregiver-husband, I have been surrounded by people determined to make things bearable for me.

Not to make things better.

Not to make me feel like cancer isn’t shitty.

But to make it a more than bearable experience.

Something I could get through, if the treatment and sheer, dumb luck were also on my side. And something I could live with, if the treatment or sheer, dumb luck weren’t.

And thank goodness, I got through it. Thank goodness for that.

The next steps, as I mentioned earlier and in previous posts, are to start endocrine therapy, continue my follow-up and regular scans now that I’m considered at higher risk for cancer development, and wait for the final implant surgery to take place this summer.

Endocrine therapy, or hormone therapy, is medical intervention to prevent the hormones that previously caused my breast cancer to grow from causing a recurrence or another hormone-positive breast cancer to appear on my left side. This therapy, like my chemotherapy, is managed by Dr. Solti, my medical oncologist.

I actually began a portion of my endocrine therapy (ET) in August, right before my first chemotherapy infusion, when I received my first Lupron injection. Lupron is intended to shut down ovarian production to protect the eggs during chemotherapy, but it is also used after chemo ends as a supplement to the standard ET treatment. I’ll continue with Lupron for the remainder of the time I am required to continue endocrine therapy, as far as I understand.

In addition, Dr. Solti had asked about my interest in participating in a clinical trial of a new endocrine therapy drug, which she initially was excited about for my case. However, because of the control requirements for the clinical study, we discovered that I wouldn’t have been able to take another supplement to the standard ET treatment that Dr. Solti wanted to put me on, and it is possible that I would be under-treated were I to be randomly selected to not receive the trial drug and instead receive the standard ET treatment, without the supplemental medications.

In the end, I’ve decided not to participate, and will begin standard treatment with those supplemental meds in the coming days—once the pharmacy fills my script. Patrick and I aren’t certain, but we think it will be a cocktail of three drugs, that will work together to prevent estrogen production and also to prevent estrogen from entering cells and causing the kind of growth that became my breast cancer.

I’ll be on these drugs for at least five years; at the five-year mark, I’ll meet with my medical oncologist (hopefully still Dr. Solti…) to determine my continued risk and whether or not I need to continue with endocrine therapy for another five years.

The side effects for these drugs are no joke, but I’m trying to stay hopeful that I’ll be as alright on them as I was with radiation and chemotherapy. I managed.

Even though and even when it sucked, I managed.

We did learn from Dr. Solti that I would be able to pause endocrine therapy in 1 to 1.5 years, for up to a 2-year period, to try to conceive and have a child. Studies have shown that there is no increased risk for women who pause their endocrine therapy drugs following this timeline to conceive and bear a child, and that the hormones released during the pregnancy have not led to a greater risk of recurrence in women, as long as they resume endocrine therapy following the child’s birth. This was good news, as one of my sadnesses concerning this diagnosis has been that we had planned to try to conceive again after my miscarriage in early 2024.

However, I’m not sure that’s the route I will want to take in 1 to 1.5 years’ time. I asked at my appointment yesterday with Dr. Solti if a child I had would be at greater risk for breast cancer even though my type of breast cancer was not genetic. She explained that, with cancer, there are several types of risks we consider: genetic risk, where actual genetic mutations passed down from one’s parents will increase the likelihood or ensure a certain type of cancer develops; environmental risk, where toxins or other factors in one’s environment contribute to an increased risk of cancer development; and family risk, where the development of a cancer is more likely if a close family member has also developed that cancer.

While my genetic tests all came back negative for mutations, and I wouldn’t directly pass on a breast cancer-causing gene to a child, Dr. Solti said that any child we had together would need to start screening for breast cancer at an earlier age and potentially take other precautions because of this final, family risk.

That’s pretty heavy, in an already heavy world.

While it is nice to know that option is available to me, I know, too, that there are other ways to be parents if we want to be.

It’s not fair, but it’s not very fair that I got cancer, either, and I’ve had to make and keep my peace with that.

I keep thinking of this piece in Audre Lorde’s A Burst of Light, her collection of journals from the second time she was diagnosed with cancer, where she admits to asking herself “WHY ME?” regarding the metastasis to her liver of a breast cancer she thought she’d removed six years earlier in a double mastectomy.

I had this thought, too, early on: “Why me?”

And then, quick on its heels, I had another: “Why on earth anyone else?”

Lorde answers her question herself, too, writing that a “little voice inside of [her] said sharply, ‘Now really, is there any other way you would have preferred living the past six years that would have been more satisfying? And be that as it may, should or shouldn’t isn’t even the question. How do you want to live the rest of your life from now on and what are you going to do about it?’ Time’s a-wasting!”

I loved that.

It’s funny because—sometimes, anyway—once you get cancer, it doesn’t matter. Not why or how or even that you got it.

Don’t get me wrong: other times, it matters, a lot. An awful lot.

But the times that it doesn’t? Those feel like the times when time’s a-wasting. When what matters most is being alive.

Anyway, it feels weird to try to get in a “final word” on this cancer schtick—something I’m not sure I’ll ever finish processing or trying to understand. So I won’t. I’ve got just one more post planned before I let this page go dark, though, as I’m ready to wrap this part up—so stay tuned for a guide on how to support a loved one (or stranger) in need after a scary diagnosis!

#writing #puttinghereforposterity

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thisisnotreallife · 4 days ago

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The Cancer Journals, Part XII:

Let's Talk About Reconstruction*

Federal law mandates that insurance companies cover all costs relating to reconstructive surgery following a breast cancer diagnosis—including any surgery required on the other side to attain symmetry if the patient had a single mastectomy.

While I’d prefer that we have a federal law mandating that insurance companies cover all costs related to healthcare, broadly (I feel compelled to make a Luigi Magione joke here, but I’ll refrain), I’m glad my options aren’t 1. Pay out of pocket for a singular boob job, or 2. Walk around with one breast the rest of my life and deal with the day-to-day impracticalities of that.

Patrick and I met early on with Dr. Kim, my reconstructive surgeon, to whom Dr. Storm had referred us—before beginning chemotherapy, even. Our initial consultation appointment lasted close to two hours, and began with him providing a history of mastectomy and reconstructive surgery, included consistent references to the breast-as-a-pillow metaphor he’d explained when he got to modern-day reconstructive surgery approaches, and ended with him taking photographs of my bared chest with a professional camera while Patrick looked on.

There is no modesty once you become a cancer patient.

We both really liked Dr. Kim, though; we felt at ease with him and trusted his expertise. Like Dr. Storm and Dr. Solti, he gave off the vibe that he had chosen his particular professional focus intentionally, with the desire to help people who needed it—and there’s an awful lot of opportunity in plastic surgery to help people who don’t necessarily need it but will pay for it, anyway.

Plus, I thought it was hilarious that the only male physician on my oncology team was my reconstructive breast surgeon—though this changed to gender parity when Dr. Siddiqui joined as my radiation oncologist.

Dr. Kim explained my options for surgery and reconstruction, based on the treatment plan of a mastectomy that Dr. Storm had recommended, drawing diagrams of mastectomy drainage tubes and the anatomy of the breast on a whiteboard in the exam room.

Though there are several kinds of reconstructive surgery possible—including taking fatty tissues from one area of your body to use to literally reconstruct the breast—the path forward for me would have to be an implant, if I wanted reconstructive surgery of any kind following my mastectomy.

If I wanted, I could opt to have a bilateral mastectomy and immediate reconstructive surgery with implants for both breasts. I could also decide to augment the size of my breasts at this time, choosing any implant volume I desired. Because of the federal law mandating coverage, doing so would not be considered elective, even though my left side was cancer-free and removing it would technically not be medically necessary—nor would increasing my size.

The other option would be to do a single mastectomy and place an implant on the right side only. Insurance—and this part really gets me—will also be required to cover any lifts on the non-implant side to achieve symmetry throughout my life.

Free boob lifts on a noncancerous breast but the government can’t make sure everyone has access to chemo drugs. Mmhmm. 😒

Don’t mistake my snark for asceticism, though: I am more than willing and ready to take advantage of this part of my breast cancer meander (still refusing the phrase “journey” and this is the best alternative I’ve landed on).

It’s just nice to know that our breasts remaining visibly intact from the outside is more important than our literal lives to the people writing legislation and the people approving and denying insurance claims.

In the end, I decided to do a single mastectomy only.

If I had genetics indicating a high possibility of breast cancer happening in my other breast, I would have considered bilateral—but Dr. Kim said something at our initial consult that was very helpful in making my decision, which was that a bilateral mastectomy would mean they were operating on and removing a healthy breast.

It wasn’t an easy decision, but I also chose to move forward with an implant, rather than stay flat on one side. If I had required a bilateral mastectomy from a medical standpoint, I would have considered staying flat completely. But the logistics of being one-breasted, even with a smaller chest, didn’t appeal to me (alas, the time of the Amazons is past, and only the worst Amazon remains, reigning supreme).

The normal process for a mastectomy with immediate reconstruction involves the breast surgical oncologist (Dr. Storm, in my case) and the reconstructive surgeon (Dr. Kim, in my case) working together during the mastectomy surgery. Dr. Storm removed my breast tissue, lymph nodes, and any cancer she could see. Dr. Kim then inserted what is called a “tissue expander” into the same incision made by Dr. Storm for the mastectomy and attached it to my chest wall, suturing the little tabs around the edges of the expander like anchors to my body.

The tissue expander, when seen outside of the breast, looks like a round-ish, empty, clear bag with a hard blue valve shaped kind of like a flattened egg on one side and six of those little blue tabs that secure it to the body around the edge of the circle the bag makes when laid out flat.

The reconstructive surgeon also inserts something called “Alloderm” above the tissue expander. Alloderm is a “regenerative tissue matrix” used in breast reconstruction that sort of replaces some of the tissue removed and helps the tissue expander and eventual implant by encouraging cellular regrowth in the skin of the breast and the tissue of the chest wall. In layman’s terms, a “regenerative tissue matrix” means that Alloderm is a piece of human cadaver skin that has been processed to remove cells that could cause issues, inserted post-mastectomy to help support tissue regeneration. Kinda gross, but also kinda cool? 🤷🏼‍♀️

Once the Alloderm has been put in and the tissue expander has been inserted and sutured to my chest wall, they sew me back up.

I didn’t ask which surgeon gets to do the incision at the end, but I will at my next follow-up. Ha.

Dr. Storm was able to perform what is called a “nipple-sparing mastectomy” for me, which means exactly what it sounds like it means: a mastectomy resulting in me keeping my own nipple and areola. There are cases in which a nipple-sparing mastectomy is not possible, such as when the cancer is in the nipple or areola area (say that ten times fast); in these cases, patients have the choice of not having a nipple at all or of a rather realistic tattoo—at least when viewed from the front or in a mirror facing forward.

So, when I went home from my mastectomy back in November, I went home with the surgical scars from the mastectomy, a drainage bag hanging out of my right side, and a tissue expander and some Alloderm fitted inside the skin of my very confused and bruised right breast.

One week after my mastectomy, and following my post-operative appointment two days after surgery (at which Dr. Kim said everything looked great and told me “Your nipple is a keeper” with no trace of humor or irony), I returned to the reconstructive surgeon’s office to begin the process of filling the tissue expander, which would prepare my tissues for the insertion of the implant.

This is widely understood to be one of the more painful parts of breast implant surgery, though doing it at the time of mastectomy decreases the discomfort somewhat—but mostly because everything already hurts, anyway.

To fill the tissue expander, the surgeon (or in my case, the physician’s assistant) inserts a very large needle filled with saline into the breast, just above the hard valve in the tissue expander. The valve is hard because it is made of metal, and the large needle is fitted with a magnet, which straightens when the needle is in the correct position to enter the tissue expander valve.

If you’ll recall from one of my earlier posts, a mastectomy results in the loss of feeling in the center of the breast and nipple area, so I thankfully didn’t feel much more than pressure as the needle went in.

Since I opted for a single mastectomy, Dr. Kim and his PA would need to fill the tissue expander to match my other side, inserting a small amount of saline at each visit and allowing my tissues to spread and expand before the next visit. And since a single mastectomy meant I would be staying the same small-chested size I was before cancer, it turned out that I only needed two quick visits to fill the expander to the right size—though how the PA could tell how much it had expanded beneath all that swelling, I’ll never know.

If my lymph node hadn’t tested positive for carcinoma and I hadn’t needed radiation therapy, I would have spent the next three and a half months post-mastectomy and tissue expander pump-ups healing, and then proceeded with the final implant surgery in late January or February. Because Dr. Kim and Dr. Storm worked together for the mastectomy and immediate reconstruction, the final implant surgery would require minimum healing, and I planned to hold what I was calling a “Booby Shower” in the spring to celebrate being finished with my cancer meander (well, except the five years of endocrine therapy that will start next week, but that’s a post for another day).

But. The lymph node was positive. Which meant I did need radiation—which affects both the timeline and approach for reconstructive breast surgery, unfortunately.

Radiation therapy, because it is essentially a laser intended to kill the cells that make up our bodies and does not distinguish between cancer cells and noncancerous cells, causes changes both on the surface and inside the tissues it is beaming through. Generally, the tissue in a radiated area can tighten or shrink, and it is difficult to tell by how much, as these effects don’t generally present until 3-4 months after radiation therapy ends.

If an implant is inserted before the tissues in the chest wall and breast have finished…adjusting…after radiation, something very painful called a capsular contracture can occur, which means a “capsule” of scar tissue forms around the implant, tightening and hardening inside the body. It looks painful and sounds awful.

Because of this, my final implant surgery will take place no sooner than six months after radiation therapy ends (final round is Monday, January 6th, as of this writing!).

And, since we are talking both tissue expansion from the bag in my chest and tissue contraction from the radiation here, Dr. Kim and his PA need to adjust how much they fill the tissue expander based on the expectation that the tissue will shrink over the next six months.

Practically speaking, this means I am walking around with my right side over-inflated compared to the left, rather than the symmetrical look I was promised by federal law (har-de-har-har-har), for the next six months!

Honestly, it’s not so noticeable unless I’m lying flat on my back, which I expect will still be the case even when the final implant gets placed this summer—so I better get used to having a fake boob now.

At first, when I’d gotten over the shock and anger about having to undergo a course of radiation therapy after my mastectomy, I was still peeved that I’d be stuck with the expander for six months instead of getting the final implant surgery over and done with in just a few weeks. The tissue expander hurt, and it wasn’t just after the visits to Dr. Kim’s office to fill the expander up, when my body was adjusting to the extra space needed to accommodate the saline.

I could feel each of the anchors around the edges of the expander, and sometimes I could even feel with my fingers through the skin to the thick thread Dr. Kim used to suture them to my chest wall.

Our bodies aren’t made to sew bags into, and so I could also feel where my side met the tab and see the odd, straight edge that formed on the side of my breast, where odd, straight edges normally aren’t.

The valve that the PA used only twice to add saline to the bag rested painfully just behind my nipple and was a presence I couldn’t remove from my focus, kind of like the tumor it had replaced. Always there in my consciousness, more so when my chest—slightly further out on the right side than I’m used to because of the over-expansion to accommodate radiation shrinkage—would brush against my arm, the seatbelt, a door.

I felt that I would never not feel every small part of the tissue expander inside of me for these next six months, that it would sit uncomfortably inside the skin of my right breast like the foreign object it is, that I would wish it to be out until the very moment it was out even though I’d be out, myself, from the anesthesia (and thank goodness for anesthesia because I read recently about early 19th century mastectomies for breast cancer patients performed without it, and that sounds like a hell I wouldn’t wish upon anyone 😬).

And then, sometime between late November and now, I stopped noticing it constantly.

I can still feel the tabs and the valve behind my nipple. I can still see the weird straight edge on the side of my boob. But instead of being a constant distraction and discomforting annoyance, it’s just kind of there. An internal object that provides some occasional fascination (let me just tell you, a shimmy looks funny with a tissue expander in one side! 🤣), but not one that feels like it is foreign and should be immediately cut from my chest.

Part of this is just because I got used to it, of course, but part of it is because my body healed, both from the mastectomy and the beginning stages of the reconstruction process, very well. I’m lucky to have not had any complications and grateful to have nearly full mobility and strength back—even if I’m exhausted from radiation!—eight weeks out from surgery. I joked recently to Patrick that my advice to anyone who gets cancer is to have a 15–20-year yoga practice prior to your diagnosis, so get on that (mat), if you haven’t already.

All jokes aside, I am also grateful to have access to reconstructive surgery as an option following my diagnosis. For me, it’s not so much about being attached to having breasts as it is being grateful for the option to not have such an obvious and visible reminder of being a breast cancer patient every day for the rest of my life—something I know not everyone who gets a cancer diagnosis has the opportunity to choose.

Plus, my friend Emma suggested that if I got an implant, I could name it, and I’ve been searching for the perfect name ever since.

With radiation therapy affecting my reconstruction timeline, I won’t technically be able to celebrate my new look 👙 until later this year, and so I’ve moved the Booby Shower I’m planning to August accordingly—date TBD as soon as they give me my surgery date and recovery timeline. It just might include an implant naming contest.😘

*(To the Tune of “Let’s Talk About Sex”)

#writing #puttinghereforposterity

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thisisnotreallife · 4 days ago

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The Cancer Journals, Part XI:

Finding My Cancer//Leaving Behind 2024

Today is the last day of 2024, which will now forever be the year I got diagnosed with breast cancer.

Many of us spend the last day of the old year reflecting on the months that have passed, which is something I am feeling particularly resistant to this New Year’s Eve.

It’s been a hard year.

I don’t want to remember mouth sores or bone aches from chemotherapy drugs. I don’t want to reflect on the moments that stretched into days between finding out I had cancer and finding out it wasn’t a cancer that I would be dying of imminently. I can’t remember much of the days I spent awake, but in an opioid-induced lack of lucidity, post-mastectomy; Patrick recalls conversations I was actively involved in that I have no memory of, and it is an eerie feeling.

What I do think is worth reflecting on, though (and more importantly sharing, too), is how my cancer was found this year—which is the only reason (thanks be!) that I am able to leave it behind in 2024.

In January of 2023, I saw a bump in the vicinity of my left armpit/side of my chest while in downward dog. I made an appointment with my primary care doctor for my annual wellness visit, which was overdue by a month; I had seen her two Decembers prior concerned about a lump in my right armpit that turned out to be a boil, likely caused by the oil-heavy natural deodorants I’ve used for the past fifteen years. (Cute.)

My doctor, though obviously skeptical at the back-to-back lumps-in-armpits appointments, felt around on my left side, found it, and sent me to get a mammogram and an ultrasound.

The radiologist determined it was a lipoma—just an accumulation of fatty tissue in my left armpit. Benign.

But in my “extremely dense breast tissue” (how does one cite MyChart when quoting directly? I reckon there’s an MLA rule for that…) on my right side, the doctor saw what are called “calcifications”—tiny clusters showing up as a whiteness on the mammogram scans that could lead to something. She recommended monitoring with mammograms every six months for the next two years even though I was only 36.

If I had known then what I know now—that dense breast tissue is considered a risk factor for developing cancer, both because the density of the tissue makes it difficult for radiologists to detect suspicious areas in mammography images and because (we think) women with dense breast tissue are more likely to develop breast cancer—I would have requested more imaging at the time. I would have demanded a 3D mammogram, which is a much more effective means of detecting cancers in dense breast tissue. I would have been more consistent each month at self-breast exams, which prior to my diagnosis, I would remember to do about half the time.

But they told me that calcifications are usually nothing to worry about, and so I didn’t. I came back, dutifully, in July of 2023 for a follow-up mammogram, at which time the radiologist didn’t notice any changes in the calcifications and told me to return in January.

We moved across the state in October, from Richland to Vancouver, and I neglected (like I always do) to establish new care with area doctors.I’ll do it when I need to, I always think. Who wants to wade through those insurance company websites, anyway?

In early January, just after I discovered that I’d need to schedule a new patient appointment with a primary care doctor who would need to send a new order for a mammogram to a local imaging center before I could get my scan, I found out that I was pregnant—and they don’t do mammograms when you’re pregnant, at least not in the first trimester.

Neither my new primary care doctor nor my midwives seemed too concerned that we’d have to wait for the follow-up for a few months, and Patrick and I turned our attention to the ways our lives would be changing come September.

In early February, when I lost the pregnancy, getting a mammogram was the furthest thing from my mind, and I don’t think I thought about a self-breast exam for months.

If I had known then what I know now—that the growth of hormone-positive breast cancer can accelerate greatly after the surge of hormones that happens during pregnancy—I would have done things differently. I would have been vigilant about noticing changes in my breasts as soon as I saw those two faint lines on the stick that I’d unceremoniously peed one night in early January. If I had, I could have found it even earlier than I did.

After my miscarriage, I tried to focus on “getting better”—both physically and emotionally. As the weeks and months passed, I didn’t feel like I was getting better, but I didn’t feel like I had cancer, either. I had trouble focusing on conversations I was having. I had trouble focusing, literally, when shifting my gaze from somewhere close up to somewhere far away. I felt disconnected from myself in a way I couldn’t articulate. I just felt off.

I assumed it was, for lack of better phrasing, a miscarriage hangover—that I was in a funk I’d come out of, eventually.

In the spring, I decided to make an effort to “get back to normal” by contacting my doctor to get the ball rolling on my overdue mammogram. Insurance requirements meant that she’d need to see me for a breast exam before placing the imaging order, and so I made an appointment in late April for a few weeks later, in the last week of May.

On her exam table, she found a lump in my right breast, in the densest part of the tissue—but said it wasn’t anything she was particularly worried about, and I was going to be getting that mammogram anyway.

That night, I even forgot to tell Patrick what she’d found, she’d seemed so nonchalant about it.

When I went in for the mammogram in early June, they sent me home when I told them there was a chance that I could be pregnant, since I hadn’t returned to any birth control after miscarrying. We rescheduled for two weeks later, on the summer Solstice, with the understanding that I’d be unable to get the scan then unless I knew definitively I was not pregnant.

I wasn’t, and so we did the mammogram. And then the ultrasound.

And then the radiologist came to see me in the tiny dressing room and told me she was recommending a biopsy on the mass my doctor had found four weeks earlier and I could feel the blood draining out of my face and had to force myself to pay attention to the words she was saying instead of the feeling of hot and then cold sweeping down from the crown of my head toward my heart, toward the lump in my breast.

When she left, I got dressed and walked outside to the car to tell Patrick.

I texted my sister, the doctor, along the way. I wanted to know how often biopsies came back negative, but the radiologist wouldn’t give me numbers, and my sister told me not to worry, too.

I did 108 sun salutations and tried not to worry.

I went back to the same ultrasound room for the biopsy on June 28th, a Friday, and they needed extra anesthesia to numb me fully before I couldn’t feel anything as the biopsy needle jammed into my breast one, two, three, eight times to take core samples of the lump at its center.

I went home sore and made cornmeal strawberry shortcake for the two of us. While it baked, I tried to lie in our hammock and release worries about the biopsy, with our cat Troll Boy meowing loudly under me for reasons I couldn’t figure out until the rope tying the hammock to the tree snapped, and I fell with the hammock to the ground.

I shoulda known I had cancer then.

I had my suspicions, though.

In June, I’d started to notice scratches and cuts taking longer to heal than normal and any bruises I’d get in the normal course of my life (I bruise easily and often joke that I can’t distinguish well between where my body ends and the world begins) had begun taking on a deep, frightening purplish hue and sticking around for a lot longer than usual.

We didn’t have to wait long for my suspicions to bear out, and I got a phone call from my doctor at 5:03pm on Monday, July 1st, as we were driving home from a day trip to Seattle to distract ourselves from the pending results. We still had an hour and a half drive ahead of us after the call.

And that, my friends, is how we found my cancer.

In retrospect, I have to wonder if my body was trying to tell me something, causing benign lumps to form in places I’ve always been told to pay attention to.

If I hadn’t gone to see my doctor about that lipoma, the radiologist never would have found the calcifications, which would have meant that I wouldn’t have been on a biannual mammogram schedule. Annual mammograms are supposed to begin at 40 in the U.S.—I turned 38 in September of this year—and so without these reasons to be squeezing and scanning and checking almost four years early, it’s possible I wouldn’t have found the cancer until it was too late.

If everything had been the same except that I hadn’t insisted on seeing somebody about a lump that turned out to be nothing two years ago, the cancer could have kept growing after my miscarriage and spread past the first lymph node Dr. Storm found, into my lungs. My liver. My brain.

I’ve shared before that I have no family history of breast cancer, and that when my oncology team ordered a genetics test to look for any mutations that may have led to the development of my cancer, the tests came back negative.

That leaves environmental factors (impossible to determine a causal relationship, and irrespective of my attempts to avoid carcinogenic environmental risks…) and sheer, dumb luck. The same sheer, dumb luck that caused me to be born in the United States instead of somewhere in the developing world.

When we met with Dr. Storm over the summer and reviewed my scans with her, she pointed to a vague spot on the July 2023 mammogram, near the calcifications, and said, “It’s not fair, because I have the scans that show me where the tumor is now—but I can kinda sorta see something forming here.”

I’ll never know what caused my cancer, or how long it had been growing inside of me before Dr. Storm excised it from my body in November.

But at our first appointment, when I gave her my family medical history and told her about my mother’s suicide in 2021 and my brother’s incarceration for murder, she nodded and said something about the mind-body connection. All that trauma has to go somewhere—and I hadn’t even told her about the early stuff.

The reality is, it doesn’t matter what caused my cancer, or when it started. Who gets cancer and who doesn’t is completely random—and with over 40% of the U.S. population expected to get a cancer diagnosis in our lifetimes and one in eight women receiving a breast cancer diagnosis, fairly common.

What matters—to me, anyway, on the cusp of a new year that I will be starting cancer-free—is that it’s out.

Happy New Year, folks. 🍾 🥂

Oh, and: if you haven’t checked your chest this month, get your self-exam in today. There’s still a couple of hours left in 2024. 🎆

(And psst…be sure to advocate for yourself if you feel anything is off!)

#writing #puttinghereforposterity

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thisisnotreallife · 4 days ago

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The Cancer Journals, Part IX:

Final Pathology & Next Steps

The thing about cancer is that it’ll surprise you. Maybe it’ll be when you get your initial diagnosis. Maybe it’ll be when you’re recovering from your mastectomy, having naïvely assumed you’d already cleared your last major cancerous hurdle.

And then the final pathology comes.

And I know I’m mixing metaphors—since I started with track & field and all—but that’s when the goal posts move.

We are eleven days out from my surgery today. I’ve seen my reconstructive and breast surgeons for post-op appointments, and the healing process appears to be coming along nicely.

Everything looks great—except, of course, my final pathology.

It’s not all bad: my margins are clear! All of them.

But Dr. Storm found something in surgery that previous MRI scans never picked up, which was that the cancer had spread to one of my lymph nodes.

That’s one of the ways that cancer will surprise you. It hides in nooks and crannies in the body that the doctors can’t always see until they open you up to look inside.

Before we get too far, I have to stress that finding cancer in one of my lymph nodes is not the end of the world/me, and it does not mean that I have cancer lurking all over my body.

In fact, breast cancer often spreads to the lymph nodes, and so surgeons performing both mastectomies and lumpectomies take that into account and also conduct a “sentinel node surgery” at the same time.

To do this, an hour or so prior to surgery, a doctor injects a small amount of a radioactive substance into the breast at the tumor site; this way, the dye will drain out the lymphatic channels that the tumor is connected to, highlighting the pathway that any cancerous cells that were ready to spread prior to surgery would have taken.

When the breast surgeon—in my case, Dr. Storm—goes in, she can see the lymph nodes that have been dyed and take out one or more to test for carcinoma. Again in my case, Dr. Storm took out five lymph nodes: she saw the first one and didn’t like the look of it, and so she took out the following four dyed nodes to test, too. The logic is that this way, if the node closest to the tumor turned out to be positive, doctors can trace the metastasis and find where—or if—it stopped.

Thankfully, only one of the five lymph nodes that Dr. Storm removed tested positive for carcinoma—the one closest to my tumor—which means the cancer hadn’t had the chance to spread to further lymph nodes yet (and thus hadn’t had the chance to spread to other places in my body—phew!). Dr. Storm said she thinks the cancer had already spread that far in July when we had initial pathology from the tumor biopsy and early MRI scans, but it just wasn’t visible. So it goes.

In addition to the one positive lymph node, my final pathology also showed what is called lymphovascular invasion (LVI), which essentially means that the cancerous cells invaded either the lymphatic channels or the vascular system. This is expected when a lymph node is positive—the cancer has to get there somehow!—but it is associated with a higher risk of recurrence and worse outcomes, generally.

Finally, the positive lymph node also showed “focal extranodal extension,” which is medical jargon for “there was a spot where the cancer cells looked like they were reeeeeaaaaaching out and ready to get a move on.” And if you recall, my initial pathology from the tumor biopsy back in July indicated my cancer was made up of cells very intent on spreading—and fast.

Now, Dr. Storm is good at her job. She got all the cancer out of me that she could possibly get out of me. Technically, I’m cancer-free. Technically.

But with the LVI and the extranodal extension, it’s possible that there are singular cancer cells lurking in my lymphatic channels—which can’t exactly be cut open to check for anything—that could spend the next however-long dividing and conquering my insides and send me right back to the cancer care center I’m trying to leave behind, sooner than any of us would prefer.

And so all of the above—the positive node, the LVI, the extranodal extension—point to radiation.

Which means I’m not done with cancer treatment, after all.

Which really—and I mean really—puts a damper on being able to declare yourself cancer-free.

(Maybe I could put it in scare quotes? I’m “cancer-free.”)

I’m still waiting to meet with my radiation oncologist, but Dr. Storm expects that I’ll complete a daily course of localized radiation, Monday through Friday, for about three and a half weeks. I can’t start radiation for at least four weeks after surgery, which means the earliest I can expect to finish is some time in the first week or two of the new year. Worse, I can’t complete the breast reconstruction process and have final implant placement (more on this another time) until six months after radiation therapy ends.

So much for being done with cancer in 2024, huh?

It’s not all bad, though.

Radiation therapy will reduce the risk of recurrence, both in my chest wall (the only place a cancer that hasn’t spread can conceivably return after a total mastectomy) and in my lymph system, now.

And who knows? I might end up with superpowers. ☢️

I’m told that radiation therapy is much more advanced than it was even five or ten years ago. The machines are much better at targeting specific areas, which means the rest of my body won’t be blasted with unnecessary radiation (okay, so maybe only my armpit will get superpowers…), and the shorter, daily courses are less intense in terms of side effects, too.

Dr. Storm also noted that since my cancer was on the right side, I will avoid any radiation hitting my heart or other major organs, with the (not so small) exception of my right lung through my chest wall. But still, even though I know I should stay off the internet when it comes to these things, I’ve read horror stories of skin and tissue damage as well as more serious health problems following radiation treatment.

I’m not going to refuse the care recommended to me by my oncology team at this point, but I was really hoping to avoid radiation.

Two things, though, are serving as my “alright, fine” at the moment—which is about all I can muster in the face of more (radioactive) medical hurdles ahead:

First, Dr. Solti, my medical oncologist—who managed my chemotherapy treatment and will manage my endocrine therapy, too—told us that if any of the scans had shown the metastasis to my lymph node, she would have recommended a longer and more aggressive course of chemotherapy. I know I haven’t done the radiation yet, but considering how rough chemo was, I think this might be a bit of a silver lining I can take some solace in.

And second, a friend of mine who sruvived Ewing’s carcinoma twenty years ago told me that her surgeon said, at her final post-op appointment, that they hoped to see her again in twenty years, complaining about the arm where she no longer had cancer because it would mean that she and her arm were still around to complain.

That stuck with her, and I think it will stick with me, too.

Don’t get me wrong. The side effects that come with treatment for cancer—from mouth sores and nausea after chemo to radiation burns and the possibility of cancer from radiation later in life—definitively suck. Cancer definitively sucks.

But if I have shoulder mobility issues to complain about in twenty years because radiation therapy killed some healthy tissue along with the cancer cells, I reckon that means I’m still around to complain about them, eh?

Let’s go. (Again.)

#writing #puttinghereforposterity

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thisisnotreallife · 4 days ago

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The Cancer Journals, Part VIII:

Mastectomy Eve

The country might be on edge about today’s election, but I’m feeling remarkably calm, all things considered—at least about my mastectomy, anyway.

It’s a little weird to write this update this afternoon, not knowing how tonight will unfold. But I’m walking into that operating room tomorrow no matter who will be our president next year. The show must go on, as they say.

My surgery got bumped back to the afternoon, so now I’ll have the morning to wake up, not eat a hearty breakfast, and get some yoga in before I have to go under the knife.

Pre-op, I only have two other small updates to share. First, Patrick drove me up to Seattle this past week so I could get my head shaved by my long-time stylist, Laura. My sister came with to take photos and videos, and it was both a fun and cathartic experience. And luckily, I don’t look half bad with a bald head!

I was lucky to keep as much of my hair as I did for so long, thanks to the cold cap device. I lost a lot of hair, both in patches and just overall thinning, and by the end could only wear it up in a teensy bun. My stylist confirmed that the uneven regrowth would not work well, and I didn’t want to have to take care of my hair post-mastectomy, so it was time. It feels good to have a fresh start for every follicle.

Second, I got results from my post-chemotherapy MRI, showing that the tumor shrunk from 2.1 x 1.7 cm down to 1.4 x 0.7 cm—and this was only a couple of days after my last chemo session, which means the poison hadn’t had a chance to work its final magic. It feels smaller still, a couple weeks after the MRI. While I was hoping it would fully disappear and preclude the need for the mastectomy, I guess significant shrinkage ain’t bad.

Wish me luck, everyone! I’ll see you on the other side—but my right boob won’t! 😉

#writing #puttinghereforposterity

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thisisnotreallife · 4 days ago

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The Cancer Journals, Part VII:

Boob Voyage, Righty!

Welp, I may have finished my last round of chemo, but I’ve spent the last week laid up at home with a cold instead of out celebrating—my first real cold since having COVID in 2022 (thanks, cancer/chemo drugs-suppressed immune system!).

It feels especially cruel to get hit with a nasty virus while undergoing cancer treatment, though Patrick might have it worse in some ways, as he’s got the same horrible cold and still has to take care of me, too.

Anyway, I can’t really complain, because if all goes as planned, two weeks from today, I will be at home recovering from my mastectomy, comfortably (er…maybe not so comfortable…) cancer-free. (‼️)

My surgery is scheduled for 7:30am on Wednesday, November 6th with a check-in time of 5:30am. Some people might groan at the early wake-up time, but I’m just glad I’ll only have to go about 8 hours without eating for this surgery; I had to wait until mid-afternoon to get my port put in this summer, and boy, was I hangry

When we first met with Dr. Storm, she offered me the option of a lumpectomy with radiation or a mastectomy without; I would also have the choice to do a bilateral mastectomy and remove my left, currently-cancer-free breast, as a preventative measure, too.

Health insurance companies are required to cover the costs of reconstructive surgery when it is related to a disease like cancer, and so I also was offered the option to undergo reconstructive surgery, should I choose a mastectomy. Reconstruction itself is a lengthy process, requiring the insertion of an expander at the time of mastectomy followed by multiple visits over several weeks with the plastic surgeon to inflate the expander and stretch the tissue to the correct size before the final surgery to remove the expander and insert the implant.

While a mastectomy and reconstruction are far more invasive surgical procedures, my risk of recurrence with a mastectomy is less than 1%, whereas the risk of recurrence with a lumpectomy is closer to 5-10%.

With a mastectomy and reconstruction, I’d lose sensation around my nipple, in an area about the size of a credit card. I’m not a large breasted person, so that would pretty much be the whole thing—though it is possible that the nerves can regrow, with time. But, I’d avoid the radiation—likely weeks of further intense treatment—that comes with a lumpectomy.

In the end, I decided to move forward with a single mastectomy with reconstruction.

If breast cancer ran in my family, I might consider removing my left breast, as well, but my reconstructive surgeon, Dr. Kim, said something that really stuck with me: doing a bilateral mastectomy would essentially mean we were operating on a healthy breast for no reason. So, right side only, it is.

Choosing a mastectomy over a lumpectomy came down to the numbers: less than 1% risk of recurrence is a lot more reassuring than 5-10%, even if it’s not zero. And, just as important is that I didn’t want to have to undergo radiation treatment if I didn’t have to. I’m tired of being in treatment for cancer, even if it’s only been two months since chemo started. I’m ready to be done, even if it means a longer recovery time post-surgery. At least I’ll be cancer-free. ✨

It wasn’t an easy decision to go with reconstruction for a few reasons—from a general feminist suspicion of aesthetic implants to concerns about safety. If I needed a bilateral mastectomy, I’d seriously consider rocking the flat chest. But, I didn’t feel comfortable with what a single mastectomy would mean practically for me for the rest of my life: prosthetics for bras and swimsuits or going braless and appearing lopsided underneath my clothes.

We talked with both Dr. Storm and Dr. Kim about the improvements in implant technology over the last several years, too, and I’m far less concerned about the health and safety factors I’ve heard of. The reconstruction process will take about three to four months from my mastectomy, though the subsequent procedures won’t be as major as next month’s surgery will be—so I’ll be cancer-free and rocking a new chest (at least on the right side) by early spring. 🍒

I keep telling myself I’ll be cancer-free in two weeks’ time, but it’s not exactly true. The tumor will be out of me, sure (I’m still trying to figure out how to get a hold of that damn thing once it’s out…lemme know if ya got any ideas!), but until the final pathology comes back, we won’t know if I’m ✨officially✨ cancer-free.

The final pathology will tell Dr. Storm a number of things, but the main thing we’re looking for is what’s called “clean margins.” When the tumor and the rest of my breast tissue and a couple of my lymph nodes come out, they’ll essentially freeze the tissue and take teensy cross-section slices all the way through it. Then, they’ll look at the cross-sections at the very edges of the tissue, closest to the tissue that remains inside my body—at the margins—inspecting it for cancerous cells.

If there are no cancerous cells in these cross-sections, then the margins are considered clear and I am considered cancer-free.

If there are cancerous cells in these cross-sections, it is possible that there are still cancer cells inside my body, and we have to go back to the treatment drawing board. Oof.

So, let’s hope for a successful surgery, clear margins, and a smooth recovery, eh? 🤞🏻🤞🏻🤞🏻

#writing #puttinghereforposterity

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thisisnotreallife · 4 days ago

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The Cancer Journals, Part V:

Round Three Updates

Tomorrow is the third session of my four rounds of chemotherapy treatment.

This time tomorrow, I’ll be three quarters of the way done with chemo and on my way to surgery—which, if the automated text message I got last week is correct, will be in early November.

If all goes as planned, I’ll be mostly recovered by the end of the year and walking into 2025 cancer-free and healed. What a way to ring in the new year!

Enough of my hair is still clinging to my head to wear it in a bun, so no shaved head photos or videos yet, but I have rocked the pink wig a time or two this September. Stay tuned for my next wig, arriving soon and just in time for fall!

The most important and best news is that the tumor in my right breast is changing, which means it’s responding to the chemotherapy drugs. I hesitate to say it’s shrinking, but it’s definitely *not* growing, and my medical oncologist doctor noted that it felt softer at our last check-in before chemo round two. Huzzah!

CaringBridge also made some updates recently, allowing me to link our GoFundMe and our Meal Train pages to this site and pin them to the top of the page, so if you got notified of multiple updates today, apologies!

Finally, we sent out an update and thank you to our GoFundMe donors, but it bears repeating here:

We could not have made it this far in my treatment without our loved ones—and that means all of you, whether you’ve donated or sent food or text messages or posted comments or shared emojis in support. We are so grateful to have a community of people across the globe who are here to lift us up and carry some of this big ol’ cancer burden, too.

So: Thank you all for your love, support, kindness, and good juju. We appreciate it all, and we love you very much! Now here’s to TKO’ing round three! 🥊

#writing #puttinghereforposterity

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thisisnotreallife · 4 days ago

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The Cancer Journals, Part IV:

Chemo Round Two

We are three weeks out from my first chemotherapy session, and you know what that means: round two is coming at me, imminently. 🤜🏻🥊

I’m grateful that the week and a half since I last updated this page were spent mostly side effect-free, in relative good health. I even sorta got my tastebuds back! They’re still a little wonky, but I can taste things—and I’m hoping they’ll stay that way through the rest of chemo, which is a possibility for some people.

Though I was lucky to not have three full weeks of mouth sores and nausea and searing pain when I walked, I did start losing my hair, unfortunately. It started shedding two weeks after my first chemo session, like clockwork, and has lasted all week. I’m probably losing hairs as I type this out. And probably still as you’re reading it, too.

The cold cap device I’m using, called the Paxman, doesn’t guarantee no hair loss. The general statistic is that 50% of people who use the device keep 50% or more of their hair, but certain chemotherapy drugs are more prone to cause loss than others and can skew that statistic.

With my drugs—taxotere and cytoxan—I had just a 41% chance of keeping half of my hair, so I wasn’t too hopeful. I’m not sure how much has come out by now; it’s hard to quantify 50% of your hair if you’re not participating in a study collecting data for product marketing purposes, but it looks like I can’t possibly have any hair left each time I comb it out. But I still do, for now.

I’m feeling less sad about my hair loss and more curious about what I’ll find under this curly mop in a few days. I had enough time to prepare, I think, and it helps that a friend said her dad’s partner’s curly hair came back even bigger and curlier post-chemo. 🤞🏻 A girl can dream, you know? And besides, if you ask me, it’s the eyebrows and eyelashes that look weirdest gone—but I’ve still got those, too, for now.

When I found out about the Paxman option, I decided to forgo cutting my hair off to have a wig made out of it in the hopes that I’d get lucky and keep most of my hair. Then, when it started shedding, I waited to shave my head because I’d hoped that the cold cap would work well enough that the shedding would stop before I passed that 50% mark.

By now, though, enough has come out that I can’t wear it down or in braids or half up without thin patches and bald spots showing through, so I’m left with ponytails and topknots.

Luckily, the fantastic wig I ordered from a wig maker on Etsy arrived the day I noticed the shedding start, so I’ll be ready once I can’t do those hairstyles either.

Now I just need to get a set of hair clippers so I can shave the rest off when it’s nothing more than wisps…But first: chemo, round ✌🏻

#writing #puttinghereforposterity

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thisisnotreallife · 4 days ago

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The Cancer Journals, Part III:

Captain’s Log, Chemodate 10.0

Today marks Day 10 following Round 1 of my chemotherapy treatments, and it is the first day I haven’t felt blindsided by some new side effect or other—and the first day I feel like I might actually be able to get back to good health before my next session in two weeks. Phew.😮‍💨

The last week has been rough. Rough in the way that it’s hard to convey over text message or in a social media post. Rough in the way that you don’t really know until you know it. Rough in the way that even when you’re going through it, you don’t really grasp all the muck you’re raking your way through. So, I thought I’d write it down.

The day after chemotherapy wasn’t terrible, but by the second day, the side effects started, with an extreme fatigue and an overall ugh/blegh sick feeling, mostly like I just wasn’t well at all.

I had nausea at random, solitary times, not constantly or consistently. This is better than feeling nauseous all the time, but the surprise factor leaves something to be desired. Once this week, I woke up in the middle of the night nauseated and thought I’d vomit, but it passed. Once, it happened on a workday at 9:18am, after I’d woken up feeling relatively good and ready to meet the work deadlines ahead of me. That day, I actually did vomit and had to spend the rest of the day working from bed because of said deadlines. The other time I had nausea, my stomach was feeling a bit funky, so I decided to put a peppermint hard candy in my mouth, which I had been using to help with a few side effects—but it was actually a cherry candy that looked like a peppermint in some freak factory mix-up. It shocked my tastebuds, which was not what I needed, and we had to wait for the nausea to pass before we could leave like we had been planning to. We carry an insulated, waterproof cooler bag in the car in case the nausea randomly strikes while we’re out of the house. 🥴

The drugs the doctors gave me to keep the nausea at bay work well, but they have their own side effects, too. One of the drugs is an extremely low dosage of an anti-psychotic, of all things, and even though it made it so I could keep food down, it definitely made me feel off in a way I don’t care to explore much further. Yikes.

Two or three days after my chemo infusion, I lost the ability to taste anything. Bubbly water, which had been my go-to for staying hydrated, suddenly tasted off, and even plain water was nasty. Food does not taste good when it does not taste like anything, unsurprisingly—I found it’s best to stick to bland foods, which are at least supposed to taste bland. But the malfunctioning tastebuds made it rather difficult to get enough liquids in me and to eat a varied and healthy diet; I mostly ate bland carbs this past week. I could not stomach any meat or seafood after a few days—luckily this only happened after we ate the amazing carnitas that our friends Patty and Graham dropped off on the Monday after chemo (thank you!!).

Along with the tastebuds, because the chemotherapy drugs are targeting the fast-growing cells in the body, chemo patients can get sores in their mouths, which I exacerbated by biting my lip over and over again in the same spot on said carnitas tacos. I was lucky to not get major sores this time, but my mouth hurt all over constantly, and my tongue developed these scalloped edges that I can feel and see in the mirror when I stick my tongue out. Otherwise, my mouth and tongue look awful, too, like I’ve been sick for ages.

My nose got dry and cracked and bloody halfway through the week—not bleeding, but that painful and dry blood kind. Thankfully, Dr. Benson answers after-hours texts and recommended Aquaphor, which worked on my nose and on my horribly chapped lips, which were not having it with the natural, coconut oil-based hippie stuff that comes in a cardboard tube I normally use.

I am taking a medication that suppresses my ovarian function during chemotherapy, which is supposed to protect my ovaries and eggs from the drugs they’re pumping into me (more on breast cancer and fertility another time). These sorts of drugs can induce an early menopause while you are on them, and right on cue, I started having very intense night sweats this week, waking up several times throughout the night in soaked sheets even though we’re keeping the room cool. I’ve had a personal AC/humidifier pointed directly at me throughout the past several nights, to no avail, and waking up throughout the night rather than sleeping through obviously means I’m getting less rest than I need. Oof.

While I work from home and my job is flexible, having to work during chemotherapy inarguably sucks, but I am trying to save my limited paid time off for my mastectomy surgery later this year; I’ll use a combination of sick time, short-term disability, and vacation time for that, and I want to make sure I can take enough time to fully heal. After this week, my heart breaks even more than it did before for the cancer patients who have to go into work through their treatment, whose work isn’t flexible or understanding, or whose work is physically demanding in any way. I don’t know how they do it, especially in America where our cancer care is tied to our employment.

For me, even in my chill job that I love, this past week happened to coincide with a few deadlines at work, since the fall term at our university starts soon. Patrick is also working full-time while trying to take care of me full-time—because if I help him with anything around the house, I run out of spoons well before the end of the day (the spoon theory has been helpful but maybe I need to walk around with some actual spoons in my pocket as a reminder…). Patrick is amazing, but more on that another day, too. 🥹

I am an extremely tense person (I’ve had more than one massage therapist audibly gasp when they reached my poor upper back and shoulders), and I noticed I’ve been, predictably, extremely tense this week. Like I’m bracing myself against the next side effect I know is around the corner. This has left me with throbbing pain in my lower back and sacrum throughout the week. I think it’s mainly my psoas muscles that are the culprit, which are very long and connected to most other parts of our bodies and are easily affected by stress, as well.

Another symptom I think is connected to the vasomotor changes associated with chemo-induced menopause manifests as what feels like a throbbing in the arteries and veins in a localized area, very intensely and for a short period of time, sometimes when I move. It passes relatively quickly, but it is all-encompassing when it happens, and painful, stopping me in my tracks—which sucks especially because then it sometimes happens again, in a different area of my body, when I begin moving again.

I’ve ended more than one night with the kind of pounding headache that surges with any movement, definitely worsened by my difficulty drinking enough water throughout the days and probably not helped by the sugar in the Gatorade I can manage to drink watered down 3:1, and my cough, which has shown up any time I’ve been at all under the weather since I had COVID in June 2022, has been acting, up, too. Oh, and at the risk of oversharing (har-de-har-har-har—who am I kidding? Isn’t that what I’m doing here to begin with?), I also happened to have my period this past week, which was intensified by my brand new copper IUD, the only form of long-term birth control that I can currently use because it is non-hormonal and will not cause my cancer to grow like hormonal birth controls might. And nobody wants to get pregnant during chemotherapy.

The weird thing about cancer, when it’s caught early, I guess, is that the cure—the things the doctors and nurses do to get the cancer out of you—is the thing that ultimately makes you sick.

I mostly felt fine before my port surgery and chemo started. A little worn down. More tired and out of sorts than usual. Disconnected, almost. But not sick.

I think this is hard on a lot of cancer patients. It’s hard to muster the ease and the strength needed, at once, to meet the rolling tide of side effects to drugs the doctors tell you are going to help you live, when those drugs are sapping your strength and making your life harder, not easier.

The other weird thing about cancer—the kind that’s caught early and has a good prognosis, I mean—is that it’s just something you make it through. You just do. Moment to moment. Day to day. New side effect to new side effect.

You roll with it, and you don’t have much time to think about how much it sucks even though you know it does. And when someone asks you how you’re feeling, you don’t have the space or words to tell them all the things at once, and so you tell them what’s happening at the moment. And it doesn’t sound so bad, really. And it’s not.

But it also is.

Cancer is all-encompassing. Every moment kind of sucks; some moments really suck. And yet, there’s never been a moment—so far, knock on wood—where all of these side effects have been beleaguering me at once. There’s never been a moment—so far, knock on wood—that I didn’t think I could make it through to the next one.

That’s due in large part to both my excellent care and my support system—starting with Patrick and extending to all of you reading and beyond.

Cancer sucks. Chemotherapy sucks. But I’m doing it. And in some ways, because it’s gonna save my life, I’m grateful to be.

It feels like a miracle. A miracle that really sucks, but a miracle, nonetheless.

As a friend of mine once said, hallelujah anyway. ✨

#writing #puttinghereforposterity

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