A place to update my family and friends about my breast cancer journey. Yes, I called it a "journey".
I am Luli. I am a mom, step-mom, wife, daughter, sister, cousin, niece, aunt, friend, and teacher. 2020 has thrown us all some curve balls, and here I will chronicle my own 2020 mess with grace, brutal honesty, and a good amount of humor.
You know how the saying goes that no news is good news? When it comes to my cancer, this is definitely true. After my October mastectomy, I spent several weeks recovering and getting used to my new chest situation. By all accounts, one can declare me cancer-free. It was cut out, and it didn’t spread and take hold of my lymph nodes. I am one lucky B. Of course, it’s not as easy as that. Because the cancer is hormone positive and my body is still an estrogen and progesterone producing machine, I have to be on medication for 5-10 years to keep any rogue cells circulating in my blood (yes, this is apparently a thing) from feeding off said hormones and starting a party locally or somewhere else in my body. The main purpose of this medication is to prevent a recurrence. According to the testing of my tumors, the chance of recurrence is very small, less than 6%, and the medication reduces that risk by half. This puts me at basically the same risk as the ‘regular’ population. So this is something that my doctors are not worried about. This medication, called Tamoxifen, is life-saving, but has some pretty annoying side-effects. Still, the benefits outweigh the risks, so pass me a pill, a glass of water, and bottoms up!
Since I last wrote, I had a couple of meetings with world-famous breast cancer oncologists to make sure that I am indeed on the right path with this specific hormone-blocking treatment. Both Dr. Charles Vogel at the University of Miami and Dr. Otto Metzger at Harvard/Dana-Farber basically laughed at me for coming in all worried about my lame boring cancer. Okay, they didn’t laugh at me; they were in fact very reassuring about the fact that I am taking the right medication, and that I definitely do not need more aggressive treatments like removing my ovaries prematurely. Dr. Metzger told me to just go live my life. And exercise.
I am finally updating the blog because I do have a surgical procedure coming up in two weeks. On March 4th, I am getting an implant exchange surgery. It’s a revision to the reconstruction and very standard. The expandable implant Dr. Becker was filling with air and subsequently saline was not meant to be permanent. It is, in fact, super stiff and uncomfortable. If you can picture a spherical brick under your skin, you might come close to understanding what this feels like. So, now that the skin is gently stretched and healed, the temporary implant will be replaced with a long-term one that will be much softer and much more comfortable. Of course, I am not looking forward to another surgery, recovery, and drains… but I am kinda looking forward to the two hour nap.
So Breast Cancer sucks. We can all agree on that. I know when I got my diagnosis, it was one of the scariest moments of my life, and it was probably one of the scariest moments in the lives of the people who love me the most. Once we knew what was actually going on, we could breathe and understand things were going to be fine. That is not the case with everyone, though, and I am painfully aware of that. I dedicate this post to my friend Mindy. I have known Mindy for several years. We worked out next to each other in our friend Jan’s amazing cardio dance class. I was devastated to learn that Mindy passed away from metastatic breast cancer on February 11th. She was warm, funny, spunky, and kind. I will miss her.
Nearly two and a half weeks after my surgery, I am finally starting to feel like myself again! It’s time to update my beautiful family and friends about my recovery.
Not gonna lie, the first week brought quite some rough days in terms of pain and discomfort. Most of the pain has been on the mastectomy side, which is my right side. Specifically, the pain has been in the armpit and the arm due to the nodes that were removed. After much research pre-surgery, I did contrive a comfortable sleeping situation consisting of a large wedge pillow, topped with a giant u-shaped pregnancy/body pillow, and a big pillow under my knees. This allowed me to remain on my back comfortably. I am a side and stomach sleeper, and that won’t be happening again for a while! The funniest part of this arrangement is that Eric seems like he’s on a lower floor as we lovingly gaze up/down at each other.
My current BFF is Hilton Becker, my plastic surgeon. I have seen him every other day since my surgery as follow-ups on the girls, who are basically strangers to me now: my boob and my foob (cancer-speak for ‘fake boob’). Things are still bruised and swollen and healing, but I can see the artistry that Dr. Becker is known for and I’m excited for the final results. My left boob underwent a lift, and my right boob underwent a skin sparing mastectomy with an immediate adjustable implant. Up until today, he has been filling the implant with air to slowly allow the healing skin to stretch so it is symmetrical to my left side. We achieved that today, and on Monday the air will be replaced with saline. Here’s a photo of me after my appointment today– right foob is looking like a boob! (in a shirt, at least)
It feels so strange to have your body change this much in one day. Of course, post-surgery cancer boobs are scary to look at, and I understood that what I was seeing was not going to be the final result. Still, it was an irreversible good-bye to my old self. In the coming weeks and months, I’ll be getting used to this new self. At the moment, my foob is basically at its air capacity and it feels like a balloon. Seriously. Weird.
Another weird but interesting experience I have had recently is a 10 day treatment at a hyperbaric oxygen chamber. If you’ve never heard of this, it’s a tube where the air is pressurized and you lie there for an hour breathing in pure oxygen. Dr. Becker sent me there to speed up the healing of my incisions, especially bringing pure oxygen to the cells of my mastectomy side skin. Here’s a photo I snapped while in there a few days ago:
When I first looked at that tube, I was worried I’d be MRI-style claustrophobic. However, I have used my time there to listen to relaxing music and do some mindfulness meditation. It has been lovely, it has helped my incision healing, and it’s helped me sleep better. The place where they have this tube is also so strange, though… it’s a location in Delray that has treatments like a cryotherapy freezer and individually tailored “IV”s people can sign up for. The staff are all ridiculously fit and attractive people with nursing degrees administering IVs, or in my case, taking my blood pressure before zipping me into the tube. Yesterday was my last treatment, but I was oddly fascinated with this place and the people who go there out of their own volition.
My focus is now on the next step. My first post-op appointment with Dr. Reddy, my oncologist, is next week. This is an important appointment as we will be deciding the specifics of the systemic (whole body) therapy I will need to keep this cancer from coming back. As I shared earlier, it looks like I can safely avoid chemo because the Mammaprint indicates no real benefit for my particular kind of cancer. While this is great news, there are still therapies I must undergo. This will most likely look like hormone receptor blocking medication I will take for the next 10 years. There are some serious side effects associated with these meds, but of course they all outweigh a cancer recurrence.
I will end this post with a big THANK YOU to the friends and family who have made us feel so loved through this process. I had flowers delivered no fewer than five times. My Henderson moms, co-workers, and friends arranged a meal train that kept us fed for TWO whole weeks; I can’t tell you how fun and delicious it was for us to hear our doorbell at 6:00 pm daily with a new delivery of awesome. Thank you so much for your generosity. I have also continued to receive thoughtful cards and gifts in the mail, from mugs, to blankets, to inspirational jewelry. I feel so undeserving, but so, so grateful. To express my gratitude, here is a cute meme for all of you. May all future lab results I take look like this:
After the four-hour surgery, hospital stay and recovery, and my first two post-op visits, I finally have some time to update the blog on my breast cancer status.
The morning of the surgery, I was frantically trying to leave everything clean and organized…. but I should have just chilled because my mom showed up nice and early and she did what mamas do… she organized my fridge, did some laundry, and made me the yummiest soup ever.
When we got to the hospital, I saw my former student Angela again!
She was happy she could find me and wish me luck before the surgery.
I met the anesthesiologist, who told me they’d take care of me during the procedure “like a little baby”. Strange, but I certainly appreciated the sentiment. I also saw Dr. Dudak and Dr. Becker, who used a marker to draw all over my boobs. Right before being wheeled away, I freaked out a bit and I barely remember making it to the OR, so they must have seen my anxiety and decided to “give that bitch a sedative- STAT!”
The next thing I remember is opening my eyes in the post-op area, not quite sure of where I was until a nurse came to greet me. My first question was, “what time is it?” It was 5:45 PM. She said all had gone well with the surgery, and they were going to call Eric to come see me. When he walked in, the first thing he told me was that the lymph nodes had tested negative during theOR pathology test!! I immediately started bawling because that was my biggest worry- nodes so full of cancer they’d show up in this test.
Dr. Dudak gave him the good news after her first half of the surgery, which he shared with my family—and the news rapidly spread before Dr. Becker was done with his portion of the surgery!
We had to wait quite a bit for the hospital room to be ready, but I was definitely in zero pain (I got some morphine!), and Eric and I were just basking in the fact it was over, I was awake and alert, and the cancer had been cut off successfully.
As they finally wheeled me into my room, the first thing I saw after getting out of the post-op area were these double-doors with a huge sign labeled COVID UNIT. No joke, what a scary thing to see. I wasn’t scared for me, but I was definitely scared and sad for anyone who might be in there, on a ventilator, and unable to see family or friends. What a wake-up call.
My room was a private room and super cute and tiny.
By the time I was settled in the room, Eric was pooped and I begged him to go home and relax. He did. The night was not very eventful. I had some pain, I was given major drugs, and I had to use a bedpan because I had strict orders not to get up before the morning (no need to elaborate on that further).
Right around 7:00 AM, I begged the nurse to let me get out of bed. My wish was granted, and I was able to walk around the room, which felt so good. They told me Dr. Dudak likes to see her patients up and sitting on the chair. So I thought it was a good time to post this on Instagram. I was super drugged up and feeling pretty great!
Dr. Becker came by first and declared that everything looked good. Dr. Dudak came by about a half hour later, and after sighing that Becker “always beats her to the hospital” she also said the post surgery incisions looked great.
My recovery at home has gone well. I won’t lie- I’ve been in pain. But it’s also been very manageable. My mama had been busy making everything at home cozy, my dad drove up to hang out, Austin was so sweet and ready to get me water, fetch me pillows, take the dog out, hand me my phone… It’s been so great.
So, to end this post, my post op appointments both went well! I saw Dr. Becker the plastic surgeon yesterday. He had two FAU med school students in tow, so he was in full teaching mode. I was “Display A” and it was encouraging to hear him explain how well things had turned out (even though on day 2, to an untrained eye, newly operated boobs look rather gruesome…)
This morning, Dr. Dudak met with Eric and me regarding the pathology. Good news: the biggest of the tumors found measures 1.7cm. No nodes were found to be cancerous. They will be sent to yet ANOTHER lab to triple-check that there are no micro-metastases, but in any case, I am considered node-negative. I believe that makes my cancer a Stage 1. I also asked for a copy of my Mammaprint test:
I am so fortunate for many reasons. I am lucky I kept my women’s wellness appointment despite COVID craziness. I am lucky Dr. Thompson my gynecologist suggested a mammogram. I am lucky this mammogram could be compared to my last two, and that the early cancer could be detected. I am lucky it was early! I am lucky I found a great medical team. I am lucky I have such an amazing husband, parents, and extended support network. Flowers, gifts, and dinners have just been showing up at my door since I’ve been home. I’ve even gotten some awesome “Fuck Cancer” socks from a mystery gifter. I’m just lucky! Should I play the lotto?
This is a short but sweet post. So many texts, emails, and calls have come in wishing me well tomorrow. I love all the love, and I know that one doesn’t need cancer to know all this love, but I guess it doesn’t hurt!
Here’s my feel good story:
On Friday, I went to West Boca Medical Center to take care of some pre-op testing. They took some pee, drew some blood, took an EKG, and gave me a COVID test to make sure I’m in tip top shape for a long surgery. I am, which is reassuring.
When I walked into the pre-op space, I met two nurses. One was an older Cuban lady named Esther. As she was getting me ready, she asked me if I was having a lumpectomy. I barely got out the word “mastectomy” and started crying (I promise this is a feel good story). She immediately hugged me and told me it was going to be okay. She herself was a breast cancer survivor who had been operated on the year before by…. wait for it… Dr. Dudak and Dr. Becker. And her oncology team is the same as mine. She gushed about everyone and assured me, yet again, that I was in the best hands. She had finished chemo in April and was back at work, looking and feeling well. Her cancer is triple negative and much more aggressive, yet there she was, living her life and helping the boob newbies like me. Her demeanor and her sweetness were exactly what I needed.
As she looked at my arm, however, she grimaced because my veins are so tiny or so deep in my skin it’s always an adventure trying to stick a needle in one. She summoned Angela, the other nurse in the pre-op area. As soon as Angela saw me, her eyes lit up and she asked me if I remembered her. She had a mask on, but I assumed she must have been a student because of her lovely Brazilian accent. She was indeed my student in 2013. In that class, I had them write a letter to themselves that would be mailed one year later. I had them write about what goals they had in that year, and I gave them all envelopes to address. I kept the envelopes a whole year, stamped them, and mailed them out. In her letter, Angela told herself that her goal was to get into the nursing program at the college. 7 years later, Angela is an RN working at the hospital. She thanked me for helping her with her English and for doing that letter activity. I cried again. Angela, a gifted phlebotomist, easily and painlessly found a vein.
I saw my encounter with both of these women as an excellent sign that all will be well! In the words of my sweet and beautiful Portland Mama Rene’s text message today, “Kick that shit right out of those beautiful boobies!!!” I will, Mama, I will. 😘
and it was a lot harder than I thought it was going to be!
Yesterday, I sent an announcement to all of my classes. It went something like this:
I started using the Remind app to communicate with my students after the COVID lockdown began. This has allowed us to use our phones to send and receive messages, much like a text message, but without sharing my personal phone number. Since March, this has been a great way to be available to my students and to check in on them during this difficult time; however, it’s also largely blurred the lines of a healthy work/life boundary! Still, I love the fact my students find me accessible and feel comfortable writing with class questions as well as questions on all sorts of other topics.
It made sense, then, to send all my classes this announcement via Remind. Because a mastectomy is a major surgery with a significant recovery time, I wanted to plan my absence in my remote courses in a way that was least disruptive to my students’ learning.
I struggled with the idea of whether or not to disclose my cancer to my students. On the one hand, the state of my health does not need to be publicly disclosed, and I thought for a minute that talking about cancer in my breasts may not be entirely appropriate. I mean, who wants to hear about a professor’s boob tumors? Also, since this cancer seems by all current measures to be early stage and treatable, I didn’t want to unnecessarily worry them. On the other hand, one of the things that makes my job so wonderful is the positive rapport I build with my students every semester. How would I have explained a two week absence from our Zoom classes? There’s nothing shameful in my cancer. In fact, this public blog shows I have no problem talking about my boobs or my boob tumors. I figured being upfront without getting into too many details was the way to go.
I wrote the announcement above a few days ago, but when it came time to launch it out into the Remind realm, it took me a significant amount of time to hit the “send” button! I feared that as soon as that message would light up their phones, my students’ impression of me as a happy, energetic, dedicated, grammar-obsessed professor would immediately be transformed into sorrow, pity, or worry.
Throughout this entire “journey” so far, (sometimes it feels less like a journey and more like a forced excursion into a sewage plant) this has been one of the hardest things for me to do. I have personally notified friends, family, and coworkers. I am about to put my shit out there on social media soon enough I expect… but telling my students was almost as hard as it was telling Austin and the girls! They really are like my babies. I hated it.
However, within seconds of the announcement going “live”, the messages of love, encouragement, positivity, and kindness started pouring in. It brought me to tears a few times. A small selection of these messages appear below so I can make some of you softies out there cry, too. I love my job. That is all.
It is also the first word that came to mind to describe how I feel about the women who have given me the strength, hope, and encouragement since the moment I suspected I would be diagnosed with breast cancer. We can call them cancer survivors, or thrivers, or just pretty amazing people who got breast cancer, treated their cancer, and are now living “cancer-free” on the other side.
As a disclaimer, I try quite consciously to avoid language that could be perceived as culturally insensitive. Thus my ambivalence with the word “tribe.” In fact, due to my background in sociolinguistics, I make great efforts to avoid sexism in language and violence in language (Thank you, Dr. Hardman- true eminence at UF’s Department of Linguistics, for instilling this consciousness in me). I impart this knowledge to my students every semester, so that they may be aware of how the words they choose color what they are trying to say.
This is why I truly dislike the language of cancer when it comes war comparisons. Being called a “warrior”, “fighting a battle”, “winning a battle”, “losing a battle”…. I’ve never felt comfortable with this, even before I ever thought I’d be a cancer patient. When reading others’ thoughts on the subject, it made sense for me to reject this war language. A person who dies from her or his cancer didn’t “fight” any less than a person who is in remission. “Losing a battle” with cancer doesn’t mean cancer “won”. Cancer is an ugly disease, and I understand it is normal to treat it as an enemy because in many ways it is. I like to think of it more as a really inconvenient uninvited guest that I have to just push away with the miracles of modern medicine and never let back in.
Anyway, in my quest to call my “tribe” something less racially charged or culturally insensitive, I went on a search of a word to describe these amazing women who have been my lifeline the last 7 weeks. Some of the finalists included sisterhood, fellowship, or circle. It might seem forced or tacky, but I decided to call these women my kindreds.
I realize this post is getting long and rambly. But as I patiently wait for my surgery (12 more days, but who’s counting?) I wanted to reflect on and show my deep appreciation to my kindreds.
One of the very first women I approached after my abnormal ultrasound is a beautiful mom of one of Austin’s classmates dating all the way back to preschool. I can’t express my gratitude to her enough (you know who you are!) for checking in on me the day of my biopsy and just texting me positive thoughts as I waited and waited for the initial results. You’re a treasure and thank you.
My cousin in Germany is so far away in terms of miles, but so close to my heart. After a couple of Whatsapp exchanges, we talked on the phone for hours about her breast cancer experience, her philosophies, and all the advice she had for me as I embark on this journey. She’s so great for deep reflections and deep laughs! I love her tons and wish we could be in the same room so I can give her a big covid-free hug.
Five women I’ve been in touch with are women who currently work (or previously worked) with me at Palm Beach State. They have each given me hope from different perspectives and they each have stories that span up to being 30 years cancer free! One of these women also happens to be the gorgeous mom of one of my best friends from work (also equally gorgeous), and she was operated on by Dr. Dudak and treated by Dr. Reddy, who recently declared she’s in 99% remission. (YAAAYY!) Thank you to my work kindreds for calling me, texting me, and generally being present as I go through this.
I also have a very warm spot in my heart for a beautiful woman I’ve known for a few years from Oregon. My Portland parents have taken care of her and her little boy during her recent breast cancer treatments. She has checked in on me as well, and we had a chat on the phone about our similar experiences prior to cancer, life in general, and her recovery. I knew her not very well before this, but now I feel we are truly kindred spirits.
There are also a few kindreds whom I have never met in person… we found each other on Instagram or Facebook. Some are currently in the same boat I am: newly diagnosed and starting treatment. Knowing you’re not going through something alone is one of the best gifts the Internet has given us.
Another great gift of the Internet: YouTube. Please enjoy a live version of “Verdi Cries” by a young and beautiful Natalie Merchant:
PS: Happy birthday, mami! I love you, and thank you for being my mom. I appreciate the selfless time, love, and EVERYTHING you have given me since I was born, but it means so much to me now. We are never too old to need our mom, and I consider myself very lucky, at my 44 years of age, that she is there for me, full of youthful energy and love.You are the best!!
Three weeks from today, on October 27th, I will undergo the surgery that will be the first step to kicking this annoying and incredibly inconvenient cancer out of my body.
I met with Dr. Dudak today. Can I tell you how much I respect and like this woman? Oh, and did I mention she’s a Duke graduate? I might have alluded to that at some point? 🤔 I had been so anxious waiting for this appointment because every day has felt like a year for me at this point. Alas, the day finally came, and we decided on the surgery for sure.
I will be having a total mastectomy on the right side with removal of sentinel lymph nodes. This means that all of the breast tissue on my right breast will be removed. I will also be injected with some special radioactive substance that will color and identify the “sentinel” nodes in my armpit, which are basically the two or three nodes that are the first to drain fluid from the breast tissue and thus the most likely to have cancerous cells in them. During the surgery, a pathologist will test the removed nodes, and we will know after surgery whether any were positive (have cancer) or not. This test is 95% accurate, so the nodes (even if negative) have to be sent to a lab for definitive cancer status. Again, the doctor is very optimistic on this front because the imaging showed normal nodes on the MRI.
After her portion of the surgery, which will take about 90 minutes, Dr. Becker the plastic surgeon will swoop in to reconstruct the right side and do a cosmetic lift on the left side. His boob-restoring and symmetry-enhancing portion of the surgery will take around two hours. I will spend one night in the hospital and then come home with a collection of drains that will accumulate fluid for a few days until they can be removed. Let’s just say I won’t need a Halloween costume. I’ll have literal tubes coming out of my body collecting red fluid for days.
To say I’m excited about having a surgery date is an understatement. Who gets excited about major surgery? This girl! I am so lucky to have my two favorite guys (Eric and Austin) and my amazing parents to help me out through recovery. During the next three weeks, I will do all I can to make my body as strong as possible for surgery. Just picture me in Philly running up and down the museum steps.
I’m saving the best news for last: The MammaPrint results came in. The test looks at the individual biology of my tumors and runs a genomic assay (fancy term) looking at over 70 genes to the end of predicting (1) the probability of cancer recurrence and (2) whether chemotherapy would be recommended. The test put me at LOW RISK!! According to that result, we’re about 90% sure at this point that I will not need chemotherapy! It’s not 100%, because, again, nothing in cancer is, but all signs at this juncture are pointing to no chemo. If you want to learn more about this test, here’s a super short video that explains its purpose:
Appointments, consultations, and more waiting, oh my!
Happy October! It’s strange to now be in the month of ubiquitous “breast cancer awareness,” when it seems that every company has decided to vomit pink ribbons and pink merchandise to raise awareness and raise sales of their pink things. I know I sound a bit jaded about the whole thing, but that’s only because a few years ago, I was the one who gladly ponied up money to buy the pink Panera coffee mug with unlimited refills during the month of October. The last time I ordered checks from the bank, which was at least 10 years ago, I chose the pink ribbon checks. I suppose it made me feel good that a “portion” of the proceeds was going to breast cancer research, but as the years have gone on, it seems everyone has gotten on that bandwagon. So, get ready for a lot of pink, people!
I waited since my last update to get through several appointments so I could update it all at once. Sorry, this is a LONG post. Below, feast your eyes on a week (plus) in the life of a newly diagnosed breast cancer patient:
Thursday, September 24th: Dr. Dudak
After my Dream Team tour the day before, Eric and I met Dr. Dudak again to go over the information up until that point. More good news to share: I don’t have any genetic mutations that can be blamed for this. The full genetic panel came back negative, which is great news not just for me but for my family members. Yay!
Dr. Dudak also informed me that she and tumor board had discussed my case and that based on what’s going on in the boob, I am a candidate for one of two types of surgery. One is a lumpectomy, which means she would scoop out the lesions, leaving a clear margin of cancer-free tissue. This is a less invasive surgery with a much easier recovery. The downside is that with a lumpectomy I would HAVE to do radiation on the entire right breast. Another downside is that given the fact I have three lesions, and that lobular lesions sometimes grow in branch-like formations, there’s a good chance the surgery margins would not be clear and I would have to go back in for more surgery. The second choice is a mastectomy, where all of the breast tissue is removed. This could potentially make me avoid radiation. That would depend on whether the biopsy of the lymph nodes comes back clean, which we are really, really hoping for. However, a mastectomy is a much more serious surgery, with at least one night’s stay at the hospital and a significantly longer recovery. Both a lumpectomy + radiation and a mastectomy have the same lifetime recurrence rate, which is very, very low.
The decision became agonizing from that point. Should I just take the boob intruders out and zap the remaining partial boob with radiation? Or should I just say good-bye to both knockers and have the peace of mind of no more mammograms and MRIs every six months? I could see pluses and minuses to both. I needed to speak to a couple of plastic surgeons to discuss reconstruction options for both surgeries. Dr. Dudak astutely decided to let me have a week (plus) to think about it and make the decision I would be most comfortable with. Our next appointment will be on Tuesday 10/6 where the surgery date WILL be set.
Friday, September 25th: Plastic Surgeon Consultation #1
I asked my mom (gracias, Mami!) to come up to Boca to hang out with our virtual learning kids so Eric and I could go see the first plastic surgeon. Imagine our ire when they didn’t let him come into the office with me due to COVID restrictions! I tried to, as calmly as possible, explain to the receptionist that I wasn’t there for a nose job or a Brazilian butt lift… I had cancer and wanted my husband there. No dice. I had to Facetime him in.
The nurse and the doctor were very nice. The doctor is clearly VERY experienced in breast reconstruction, and he didn’t shy away from telling me about all the conference talks he’s given on the procedures he’s pioneered. I’m cool with someone tooting his own horn if he can walk the walk. He seemed very knowledgeable. While he measured my boobs, which he declared as “somewhat droopy,” Eric was Facetiming and watching the whole thing play out. I mean, I thought I lost all sense of bodily shame after giving birth and nursing a baby… but it turns out standing topless in front of a guy measuring the distance between my neck and my nipples while a nurse holds the phone for my husband to watch is the ticket.
The one thing Plastic Surgeon number 1 said that I hadn’t considered was that I could undergo a single mastectomy, and he would do a reconstruction with an implant on that side and do a “lift” on the healthy side to make them match. A single mastectomy hadn’t crossed my mind and it was definitely less risky and ‘final’ than a double, so Eric and I were encouraged by this consultation. However, we were still kinda salty about him not being allowed in with me, so we left the appointment ready to hear what the other surgeon had to say.
Monday, September 28th: Virtual Consultation with Center for Restorative Breast Surgery in New Orleans
During the weekend, I continued my tireless research on lobular breast cancer, breast reconstruction, and just breasts in general. I came across a few Youtube videos, blogs, and Facebook posts about a sanctuary located in NOLA that caters only to breast cancer patients & survivors, and only does breast reconstruction. It’s a private hospital run by doctors who have operated on thousands of women with amazing results. Behold, the breast center:
So, it turns out that New Orleans is THE place to go if you want to get an autologous breast reconstruction. This means that doctors take tissue from your own body and reshape it to make boobs out of it. In the case of the DIEP flap procedure, fat tissue from the abdomen gets transplanted to the breast. This is advantageous because the final result is very natural looking, and the tissue is less likely to be rejected because it’s not a foreign body. Plus, you get a tummy tuck out of it. You can imagine how much this idea appeals to me. Seriously, if I’m going to go through cancer, why not get a bod upgrade?
The downside of this surgery is that it is major surgery that requires microsurgery techniques. Blood vessels have to be reattached one by one so that the new boobs have an adequate blood supply. The surgery typically lasts 8-10 hours.
In any case, I figured it didn’t hurt to call the center and get information. My plan of attack is to get the mastectomy here as soon as possible to address the cancer and get it out. I will have to recover from this surgery and then perhaps (or not!) do additional active treatment such as chemo and radiation. Three to four months (or even a year!) after active treatment, I could go to NOLA and do the autologous reconstruction on both breasts… unless I’m happy with the uniboob implant situation, which I might well be.
The people at the breast center have made it an art to help you navigate their services. I had an hour long consultation with a nurse who explained the process from beginning to end. I would have to spend 10 days in New Orleans. This appealed to both Eric and me. One of the things stupid COVID took away from us was a family trip to New Orleans for Memorial Day Weekend 2020 to meet up with our Oregon people. In any case, I’m keeping this door open. I don’t know if I will go through with it, as by then I may be over the idea of having surgeries, but I don’t want to discount it. In fact, the thought makes me happy. The irony isn’t lost on me that people flash their titties in New Orleans for beads, but what can I say? NOLA seems to be known for boobs in one way or another.
Tuesday, September 29th: Plastic Surgeon Consultation #2
On Tuesday, we drove to the Delray Beach office of Plastic Surgeon #2. I made sure to call in advance and confirm my husband could accompany me on this consultation. While Plastic Surgeon #1 is quite a bit older and very serious about his craft, this dude walked in like he was coming to have a beer with us. He was very informal, friendly, and funny, which again, I won’t fault if he can do the job. However, his forte isn’t breast reconstruction, and we generally got the feeling that PS #1 would be a better fit. The before/after photos of PS #1 were far superior to PS#2. Sorry, PS #2. The club music that was playing in the exam room and the stick-on nipples the nurse showed us didn’t sway us in your direction.
Wednesday, September 30th: Consult for Florida Cannabis Card
My whirlwind week of appointments culminated in a consultation with a Medical Marijuana doctor. After doing some research and speaking to my cousin Cristi in Berlin, who is a survivor herself, I decided I’d be a fool if I didn’t take advantage of the Florida medical marijuana program. THC, CBD… I admit I have A LOT to learn, but the positive effects of cannabinoids on both stalling tumor growth and the alleviation of negative side effects from cancer treatment are very encouraging! I got the official paperwork and should have my “green card” in a couple of weeks. It helps that both Dr. Reddy (the oncologist) and the psychologist/dietician are both very supportive of the use of cannabis for breast cancer. Cue up Bob Marley. I’m ready.
This week of appointment after appointment was also filled with Zoom classes with my students, a couple of trips to the beach, and a wonderful Sunday lunch with my parents. I can’t express just how ready I am for surgery. Let’s get this party started already. Of course, this will be one of the worst parties in the world, but the sooner we start it, the sooner I can get back to my regularly scheduled uneventful life!
If you made it to the end of this post, thank you! ❤️
Who needs LeBron or Dwyane when you’ve got Marla, Samarth, and Vinay?
Today was a day I waited for with an anticipation I have only reserved in the past for a first date. I couldn’t wait, but I was apprehensive at the same time. Instead of one suitor, my “date” consisted of five people, three women and two men, all of whom had knowledge to share and an investment in my success treating this pesky lobular intruder.
Overall, I can breathe a huge sigh of relief. After speaking to Dr. Samarth Reddy, my medical oncologist, and Dr. Vinay Sharma, my radiation oncologist, it was clear that they agree this is indeed an early stage cancer, caught at the right time.
The MRI I had last Friday the 18th was nothing short of horrific, though. I like to refer to it as an “M-R-I never want to do that again”. Maybe I’m exaggerating, but it was early in the morning, I had to fast, and the nurse had to put the IV for the contrast fluid on the back of my hand because it’s typically impossible to find veins in my arm. The test itself took over 30 minutes, and I had to lie face down with my arms over my head on a type of gurney that had a hole for my head and two holes for the “girls” to hang out. The gurney was pushed into a tiny opening into a tiny cylinder inside a huge machine. I had to hold this position for that entire time while the machine made very loud and very unpredictable noises. Here’s a sample if you’re interested:
I was given some headphones to wear and the tech played some “soothing” music one might hear while standing in line at one of the “futuristic” Epcot Center rides back in the 90s. I had no idea how fast or slow time was moving, and I started getting very angsty. My nose started itching. My foot fell asleep… I was about to squeeze the “emergency” button I had been given when the tech spoke to me through the headphones and informed me there was 6 minutes left. She asked if I wanted a change of music, and I screamed, “YES!” She switched the music to classic rock, but I couldn’t tell you what songs were playing because the noise of the machine was too loud. I could, however, tell that there was guitar and rhythm, and I could tell when a song started and ended. So it was halfway into the second song when the torture came to an end.
I am happy to report that the unpleasantries of the MRI were worth it. Today I was able to see the results. Good news! My left breast is clear, the lesions in the right breast are visible and seem on the imaging to be distinct, not connected, and a little bit smaller than the ultrasound had estimated. Most importantly, the scan showed normal lymph nodes, and nothing suspicious in the chest wall or skin. The only thing that Eric had a problem with was a line in the report that stated, “The skin, nipples, and chest wall are unremarkable.” He begs to differ. 😉
We are still waiting for the results of the Mammaprint test and the genetics mutation test, but for now, after the examination and MRI scan, the doctors were optimistic. There’s even a chance I might not need chemotherapy. (WHAT?) That will depend on the Mammaprint results and on whether any nodes come back positive after being taken out during surgery. Tomorrow morning, these doctors will meet with Dr. Dudak and some other specialists on their weekly “Tumor Board” to discuss my case and come up with a recommendation that Dr. Dudak will discuss with me tomorrow. Stay tuned!
The other three women I met with were my nurse navigator Hortensia, who is a breast cancer survivor herself, Dr. Collins, an oncopsychologist, and Nora, a nutritionist. I am lucky to have found myself in the hands of this team. Everyone is professional, kind, and very encouraging. They all know I have done my fair share of reading and homework, so there was no sugar-coating or patronizing, but the information was certainly positive and the outlook from their experience with what I’m dealing with is very good.
Today feels like a slam dunk in the face of cancer.
I knew as soon as I suspected I had cancer that this had to be addressed. After all, it’s perfectly human to ask the question “why me?” Entertaining that question can send you down a deep, dark rabbit hole, and I decided that I would take some very concrete steps to pull myself out of it quickly if I ever found myself digging.
As most of my friends and family know, this is not my first major life hurdle. To those who are reading this blog and either don’t know me or didn’t know this about me, let me introduce you to a man who touched my life in so many beautiful ways, and who left this Earth too soon: Damion.
Damion and I were barely married for a year and a half before he perished in a plane crash on March 13th, 2008. I was four months pregnant with our baby boy, Austin. I could write a whole new blog about the amazing person Damion was, and how much I grappled with losing him unexpectedly and bringing our son into this world on my own. In fact, I have an entire journal where I wrote daily after his death. Writing is truly therapeutic. Austin is the greatest gift he gave me, followed very closely by the gift of his incredible family on the West Coast, who are my extra set of parents (including two extra moms!), my brothers and sisters, and lots of aunties, uncles, cousins, and friends. You know who you are and I love you.
Now I’d like to introduce you to a young man who never got the chance to make it into adulthood or become an uncle to the two little girls I have the honor to call my bonus daughters (and by extension and uncle to Austin, too). Meet Sean:
Sean is my husband Eric’s little brother. He, too, left this world too soon at the very tender age of 15. I so wish I could have met my brother-in-law. Eric knows grief. He too knows the pain of losing a piece of your heart and soul. When we first started talking, we realized we had this in common, and it propelled us quickly from superficial platitudes into deep conversations about life and death- and we’d barely had our first date!
We decided that statistically speaking, we had each already had our “tragedy” so we should be in the clear, right? Were we tempting fate? I feel like this is an appropriate place to insert an inappropriate joke, but I can’t think of one.
Please don’t think that I consider an early-stage, treatable cancer diagnosis to be on par with losing a person you adore. I know it’s not. But still. Cancer? Really? That word has such horrible emotions drudged along with it. And that word HAS taken so many people from those who adore them. It has already turned our world upside down, but we can be comforted in knowing the treatments are temporary and I’m not going anywhere.
I came across the YouTube channel of a NYC photographer who successfully treated the same exact cancer I have. Her videos have been inspiring to watch because she faced all the hurdles and talked about them in front of the camera with such candor. She talked about the “why me?” question. She then said, “well, why not me?” We are all susceptible. Cancer doesn’t discriminate, and it’s the luck of the draw. Some of us get unlucky twice. (By the way, her videos are very good and you can watch them here . She’s doing great now and is cancer-free).
This is not a pity post. I can confidently say that I have lived (and plan to continue living for a long time) a very charmed and privileged life. I have the two most amazing parents a girl could ask for. I have a sister who is also my best friend. We never wanted for anything growing up. My extended Peruvian family is truly wonderful. I am still in constant contact with my high school besties. I attended top universities (shout out to my Dukies and my Gators!). I spent three super fun and crazy years in Washington, DC, with my two ride-or-die BFFs. I absolutely love my job- my students give me endless energy and a sense of purpose. I also have some really special colleagues whom I love like sisters. Speaking of friends I love like sisters, I have been blessed to meet and become friends with amazing women throughout every stage of my life. I have been lucky enough to find a partner with whom I share a deep, true, passionate love not once, but twice! I am fortunate to experience motherhood with my not-so-little mini-me biological child and with children who are mine through my marriage; all three are born in my heart.
This is also not *exactly* a gratitude post. It’s about perspective. My life struggles have been (are) public ones. They are prone to others’ empathy because it’s hard to hide them. I think about all those people, some of whom I know personally, who deal with life’s struggles privately. People who live with the scars of an unhappy or abusive childhood, those who may have an abusive partner, those dealing with addiction issues or have a loved one dealing with addiction, those who struggle with crippling depression, people with deep financial problems, people watching their children or aging parents suffer. It’s rare to get through life with no major struggle, whether private or not. But it was important for me to put what I’m going through into perspective, and that’s what helps me get out of that hole.
This is not an unlucky girl. This is a very lucky one.