Update 9/30

The last two weeks since coming home from surgery have honestly felt like two months. Healing and recovery are time consuming. Who knew? It's become an overused cliché to me now, but it's so true that every day gets better. So here's my recap from the last two weeks:

I spent the first two nights sleeping in Bernard, the electric recliner chair that we rented for a month. I woke up 3-4 times per night needing water or the bathroom or painkillers. Sweet Shaw leapt into action every time I called out for him. I couldn't reach the button to recline/incline, so he need to help me every time I needed to move. After two nights I started to feel good enough to sleep in bed, using an amazing memory foam set like this that helped me stay in a comfortable position sleeping on my back. Mentally and emotionally it really helped to be in my own bed, and we were both able to sleep through the night. At least twice per day Shaw would also help me clean and empty the two drains and tubes that came out just below my armpits on my left and right side. That was my least favorite part of each day. My mom and Shaw both helped drive me to appointments, the most important of which being my sessions in the hyperbaric chamber. This little miracle of pressurized air contributed significantly to my healing, and made some very scary looking dark red colors go away.

On Friday night when we returned from the hospital we began IVF treatment. One reason for doing IVF now is to save eggs in anticipation of potentially needing chemotherapy, which would damage if not destroy my reproductive organs. The other reason is that because my cancer was mostly fed by hormones it is beneficial to limit the amount of time that hormones are racing around my body. So to implant vs. try naturally could reduce that hormonal time by months if not years. Each night Shaw prepared the needles and injected me with 2-3 hormone shots to help me create multiple eggs. After a few evenings of this we started to get into a rhythm. I held an ice cube on my belly, put on Bob Marley, closed my eyes, and pretended I was on some idyllic Caribbean island. Once my belly was numb Shaw would count down, "Three...two...one..." and I barely felt the shots. Towards the end of the 12 day treatment I started to feel a bit bloated, but overall the process was easy.

On Wednesday 9/25 I had 27 eggs extracted, 19 of which were mature enough to be fertilized. We froze 9 eggs by themselves and added a wee bit of Shaw to ten eggs. Out of those ten, seven became fertilized and formed an embryo. We are getting almost daily updates on the progress of these little guys, knowing that not all will form into perfect blastocysts. Here's a nice day-by-day look into what's happening: A Guide to Embryo Development After Retrieval. This part of the process is surprisingly stressful. I had no idea that I would feel this way, simply because I'm not at all thinking of having a child right now...and yet we are creating our potential future children right now. It's really hard to think about not all seven embryos making it to the blastocyst phase (the phase to reach before freezing/implanting) and not all being good enough quality, but that's really the natural order of things. If none of the embryos make it to the blastocyst stage then they won't be viable and will not be frozen. The silver lining through it all is that we do have nine eggs in waiting.

In other news....I WILL NOT NEED TO HAVE CHEMOTHERAPY!!!!!!!!! I got the good news from my oncologist on Thursday. He based the decision on my Oncotype DX genomic test, a prognostic and predictive test that analyzes the activity of 21 genes that influence how likely a cancer is to grow and respond to treatment. My Oncotype score is 11, so I fall right in the middle of the low-risk recurrence area of the chart of 0-18. Essentially with a score of 11 the benefit of chemotherapy is likely to be small and won't outweigh the risks of the slew of side effects that come along with chemo. After the appointment Shaw and I immediately went out for McConnell's to celebrate. I will start taking Tamoxifen in early November, once I'm fully healed from surgery. Tamoxifen is the go-to selective estrogen receptor modulator. This will be the first time in my life that I will be on a medication for longer than two weeks....and actually I'll be on Tamoxifen for at least five years. The exciting aspect is that I will be taking one little magic pill every day that will help ward off cancer recurrence.

The last week has been filled with lots of rest and relaxation. We celebrated Shaw's birthday on the 22nd and I've had visitors from all over - Shaw's Aunt Christina from Houston and my best friend Jackie from New York have brightened up my world this week. I've had visits from sweet friends bringing meals and treats. A big group of friends took me out for dinner and a movie earlier in the week and I actually felt...normal. Feeling relatively normal is a hard thing for me to deal with right now. I want to be fully normal...not "normal" with an underlying major recovery taking place in my body and a mountain of medication straight ahead. I'm in that middle stage of transition where I'm halfway between the old normal and the new normal...reaching back lovingly and reaching forward hopefully, but feeling extremely uncomfortable without my feet solidly planted in one or the other. I'm not worried about getting there and, as I said at the beginning of this post, every day gets better.

The “Big One”

Wednesday was really the day we’ve been eagerly anticipating since the first day of diagnosis—my tumor of cancer was fully removed!!!

The few days before driving to Santa Monica were filled with an overwhelming feeling of being equally prepared and antsy. I just wanted to be on the other side of the 12th. We found out on the 10th that one of the 7 nodes that was removed in my first surgery was cancerous, 0.7mm of cancer to be exact. Based on that size it’s possible that the cancer spread to that sentinel node 4-5 months ago. The good news about all this is that just through the biopsy some of my cancer was gone...and we were going to take care of the rest in short order.

And then it was time to drive to Santa Monica, which, despite our preparations, felt sudden once we actually had to leave.

We found our hotel easily and mom and dad took Shaw and I for a great Italian dinner, taking a note from my triathlon training that recommends carbo loading the night before a race. I didn’t have any trouble falling asleep but did wake every hour and have to will myself back to sleep. 1AM, 2AM, 3AM, finally the alarm chirped at 4:15. Quick shower and we were out the door. Game time. 

We arrived at Saint Johns at 5:00AM and I was prepped and ready to be wheeled off within an hour and a half. The surgery prep area felt like Grand Central - nurses rushing around, with so much purpose and efficiency, and dozens of patients awaiting their departure. Little things really stood out to me in the prep area. My nurse asked if she could place the IV in my forearm so my hand or crook of my elbow wouldn’t have to be used and I could retain more mobility. I was given a large pad for my tailbone so that my back wouldn’t hurt after 7 hours on the table. Both of my surgeons came in together to chat and gave hugs all around. I really felt cared for in a whole-body kind of way.

My anesthesiologist really went above and beyond - he calmed me and eased me into sedation by talking about one of my favorite things—McConnell’s ice cream. The last thing I remember saying is, “...and my husband’s favorite is salted caramel chip...” Genius man.

Around 2:00pm Shaw was allowed to be with me in the recovery area. This was another Grand Central but with more beeps. Everyone was attached to beeping machines and the man in the next stall over was snoring loudly. Shaw says I kept asking to be moved away from all the beeping. After being fully stabilized I was wheeled up to the my room in the Caritas Suites. I don’t know how I lucked out with access to a private room. My stay in the hospital was so serene and private and the nurses were all excellent. I took my first walk in the wee early hours of Thursday morning (about 40 steps) and was walking laps around the floor by Friday morning. I know my healing was kickstarted and will be faster overall from having such excellent care in those initial days. Dr. Chopra visited every day to check on my progress and his huge grin left no room for misunderstanding - he is very happy with his work and is confident in the end result.

Believe it or not we were in the car on our way home by noon on Friday. The drive home was uneventful and we made it home just in time for my dose of painkiller due every three hours. I cozied up to my new electric recliner and passed out.

Every day has seen leaps and bounds of improvement. I can’t believe we’re home now and in full recovery mode! We’ll hear about the pathology of all of my breast tissue in the next couple of weeks and will also learn my oncatype. This information  will help my oncologist make the decision about chemotherapy and/or hormone therapy. 

The road is still long, but we’ve reached a critical milestone now...my tumor is out of my body!!!!!!

Recovering speedily,

Jessie 

Surgery Round 1!

There wasn't much traffic and so my mom, Shaw, and I made it down to LA in very good time on Tuesday evening. We found the hotel, located just a 5 minute drive from the surgery center, and put our things away before heading to a Thai restaurant around the corner. Shaw told us stories from his travels through Southeast Asia and everything felt...normal. 

Throughout the night I woke up several times, checked the hotel alarm clock, and eased myself back to sleep by meditating. After this totally restless sleep the alarm finally rung at 5:30am. I showered and brushed my hair, not even realizing in the moment how much independence those two tasks represent. I put on comfy and loose pajama pants and a soft button-up top. By 6:10 we were in the car and on our way to being on time, even early, for my 6:30 check in. 

K&B Surgical Center is a beautiful, clean, and modern facility. I had a stack of paperwork to fill out before my nurse came to greet us and take me back to get ready. My nurse was sweet and gentle and kind. She gave me her undivided attention and took time to make sure I felt comfortable and calm. The gown I wore was key in this whole comfort and calm thing. It was actually hooked up to a portable air vent that pushed warm, cozy air around my body. It was amazing. After getting my IV prepped, Dr. Funk came in to chat and confirm the procedure by marking on my skin. Soon after Shaw and mom were brought back to be with me while the anesthesiologist started a drip to keep me calm. A quick hug and a kiss and I was wheeled down the hall. 

Next thing I knew I was coming to and my sweet nurse was asking me to try to fall back asleep. Isn't anesthesia the most amazing thing? I have no recollection of anything between entering the operating room and waking up. During that time Dr. Funk made the incisions, took biopsies from my nipples and also removed 4 sentinel nodes for biopsy. She was very busy while I was passed out for that hour and a half. We should have the results of those biopsies back on Monday, and they may change our plan for Wednesday's surgery if cancer is detected in the newly biopsied areas. We'll cross that bridge on Monday.

After about an hour in the recovery room and my pain at a very manageable 3/10 we drove back to Santa Barbara. Driving to and from LA is never very pleasant but during this drive every single bump and road surface change was amplified and I found myself grating my teeth in anticipation of another bump. We arrived home and I got settled in my new throne -- a comfy chair and ottoman on loan from my parents. By Thursday my mild pain was reduced to moderate discomfort and tightness in my right shoulder area which is common for this procedure. I've been doing small shoulder rolls to ease the tightness. I took Tylenol Extra Strength through Friday morning, opting to avoid taking the Percocet I was prescribed until absolutely necessary.

Shaw and mom have been taking turns with me, getting me out of the house for little tasks or just sitting and watching movies with me. Shaw even installed a new shower head that is easier for him to use when he helps me in that department. Mom has been the absolute best - organizing paperwork and bills and doing dishes and laundry. We couldn't do this without her comforting and selfless help.

On Thursday afternoon we met with a 3rd oncologist, Dr. Kass. Although he didn't tell us anything new about my prognosis or anticipated treatment, but he immediately put me at ease and went into action by ordering a test on my initial core biopsy that may help us know if chemo or hormone therapy will more more, less, or equally effective. I feel very confident in him and I'm happy to say that he'll be my oncologist. 

So, now the full team of breast surgeon, plastic surgeon, and oncologist has been assembled and I'm feeling better and better about Wednesday's "Big Surgery" now that we've successfully navigated this test run. Onward!

Surgery is scheduled

Surgery has been scheduled for September 12th. What a mix of emotions. The goal-oriented side of me is happy to have a date locked in to prepare for. The surgery first-timer side of me is scared of going under anesthesia. The nester side of me wants to buy all of the support pillows and mastectomy bras that I can find. I have 2 weeks to get all of this sorted out so I can walk into surgery feeling prepared for all of it, even the unknown parts. 

On September 5th (one week before the big surgery) I will have a surgical procedure called a nipple delay. This is one of my surgeon's secret weapons that she created for mastectomy success. Basically she will make the planned mastectomy incisions and lift half of the skin off of the breasts. She'll also excise the ducts to be analyzed to confirm if it's safe to keep my nipples or if there's more cancer there. Then she'll put the skin back down and sew me up. So why do this? The lifted skin will call out for more blood flow that will be present in my skin for weeks and will help during the mastectomy and recovery. You can read all about the nipple delay procedure on page 249 of Breasts: The Owner's Manual. During this surgery Dr. Funk will also remove a few sentinel lymph nodes to be analyzed to confirm that cancer hasn't spread there. The MRI didn't pick up anything there, but a biopsy will confirm. This sentinel lymph node biopsy and nipple delay surgery will only take about an hour and I'll be home that night. 

The big surgery on the 12th will be more intense. We will arrive at the hospital in Santa Monica at 5:00am for a 7:00am start time. The surgery will take about 3 hours and will be both the double mastectomy and reconstruction. I will need to spend 2 nights in the hospital and should be discharged on Friday the 14th. I've been told to expect a full month of recovery. 

So what are we doing to prepare? SO MUCH! I've stocked up on all of the vitamins and supplements that Dr. Funk recommends for pre- and post-op, 11 in all! I'm in touch with Jean-Paul LuVanVi, a chef who has 20+ years of experience preparing meals for people with cancer. He will be preparing nutritious, healing meals for us for a week before and a few weeks after surgery. Shaw and I are looking into renting an electric reclining La-Z-Boy and a TV for the month so I can be really comfortable and entertained. I hear most women end up sleeping in their chairs and the electric recline/incline is essential for getting up -- no pulling myself up! There are a lot of products out there that are marketed to women who are undergoing a double mastectomy - special pillows and robes and shirts and bras - and it's a little difficult to know what I'll actually need. I am my mother's daughter, the mother who bought me 4 winter coats for my first East Coast winter...so I'm going to go ahead and buy all of it. Love you Mom. 

Beyond the tangible preparation we're also preparing emotionally. Shaw and I have been seeing our therapist again (who we worked with as a pre-marital foundational support) and I've been upping my yoga and workout routine to 5 times per week. My team at work has been incredibly supportive and has lovingly told me that they 'don't need me around' for the next month anyway. I'll miss them while I'm away.

Tomorrow my sweet lifelong friend Kathryn will accompany me to Los Angeles for a full day of 3 appointments - pre-surgery blood work and EKG, oncologist consultation, and plastic surgeon consultation. Can you believe her? Enthusiastically volunteering to drive around Los Angeles all day and sit in waiting rooms?? I'm the luckiest to have friends like her.

Things are moving quickly now which feels like a mixed blessing. We're handling it and the details are being taken care of...and I have two weeks left with the current shape of my body. I'm embracing what I have now, and welcoming getting comfortable in my next shape. Life sure is full of challenging, beautiful, and baffling transitions.

Decisions, decisions, and then peace

It's been three weeks since my diagnosis and I feel like I'm just now coming up for air. Thanks for your patience as we settle in. We are so grateful for your emails and prayers and letters and sweet gestures. We feel so surrounded by love. 

Let's get into the latest updates. 

In the waiting/purgatory period before receiving my BRCA and HER-2 test results I found a calm confidence. I knew what we would have to do if I was HER-2 positive and I felt so sure that I had BRCA-1 or BRCA-2, the two identified genetic mutations linked to breast cancer. What else could cause this? I had found my scapegoat in BRCA and I was holding on. I was completely comfortable with the idea of having a double mastectomy, as developing more breast cancer is closer to inevitable than not for women who have BRCA. Lo and behold, I'm BRCA negative. You may think this negative test result had me jumping for joy. It did not have that effect. I do not have the known genetic mutation that causes this cancer. I don't have a scapegoat. Now, that's not to say that we'll never know why I have cancer. Geneticists are constantly researching and identifying new genetic links and I'm on the short list with my geneticist to be notified when another breast cancer gene mutation has been identified. Whether we learn of a genetic link or not, the environment has played a part in this cancer showing up when it did. I've started doing a lot of research on environmental links to cancer and making real changes to remove and reduce toxins. Easy fixes that everyone should consider? Replace all plastic tupperware with glass. Do not eat or drink from any plastic that isn't BPA-free. Only use soaps/shampoos that are free of parabens and phtalates. Eat more fresh, organic vegetables and less meat.

A few minutes after learning about BRCA we also found out that I'm HER-2 negative, which means that I don't have to have chemo before surgery to try to wrangle in the cancer. Chemo isn't off the table yet, but it's not happening now. Feeling good about that. 

So, after receiving both of those results back we were essentially back to square 1. All surgery options were still on the table: 

1. Lumpectomy + radiation + maybe chemo + annual carousel of mammogram, MRI, and ultrasound + years of hormone therapy
2. Single Mastectomy + single reconstruction + maybe chemo + annual carousel of mammogram, MRI, and ultrasound + years of hormone therapy
3. Contralateral Prophylactic Mastectomy (CPM) + reconstruction for matching breasts + maybe chemo + years of hormone therapy

My survival and recurrence rates are essentially equal among all three options. Wild, right? Having a double mastectomy only reduces the risk of a new cancer in the breast, but doesn't reduce the risk of a new cancer or this cancer metastasizing in another part of the body. Without getting too carried away with those hypotheticals remember that the top priority is treating this cancer now. So, if these three options are essentially equal in their ability to treat this cancer, where do I base my decision? 

I base my decision on my life and how I want to live it. One of my favorite poems of all time is "The Summer Day" by Mary Oliver. The last two lines of the poem are "Tell me, what is it you plan to do / with your one wild and precious life?" This quote resonates with me. 

I am going to have a contralateral prophylactic mastectomy so that I can live the rest of my life without the constant reminder of this cancer every 4-6 months in the form of a carousel of appointments and false positives and biopsies. This decision was not made without a lot of careful, deliberate thought. Interestingly, double mastectomy numbers are rising, a trend that is sparking some controversy in the medical world because it's not medically necessary to have the cancer-free breast removed. I argue that it is necessary for my confidence and sanity. 

I spoke with a young woman in North Carolina who had found her cancer in a self-check and underwent surgery in February. She had also chosen to have a contralateral prophylactic mastectomy (CPM). Hearing her very real account of her decision process, surgery, and recovery gave me a glimpse into the path ahead. She gave me invaluable tips like "Stock up on comfy button down shirts!" and, "Buy bolster pillows to prop up your arms!" Getting advice from someone on the other side of a double mastectomy made it all very, very real. Oh shit. I'm about to do this too.

The day before my second appointment with Dr. Funk I had what I think was my first anxiety attack. My heart beat faster and faster, my thoughts were uncontrollable. I flipped to thinking the lumpectomy would be just fine and radiation was better than major surgery. I let myself play through that scenario and 15 minutes and a shower later I was back, and better. I was not being rational or thinking about the rest of my life. I'm facing the very major forever decision of removing my breasts. I'm allowed a breakdown or two, right?

On Tuesday Shaw and I drove to LA to meet with Dr. Funk again and spoke about my options for surgery. Telling her I wanted a double mastectomy was an empowering experience. She heard my reasons and feelings and gave me nothing but support and confidence back. I'm making the best decision for me, she knows that and I know that. Once again I felt a huge weight lift and my confidence soar after leaving her office. I hope everyone who ever has to have any surgery feels this way about their surgeon and medical team. You deserve nothing less. 

This week I'll meet with my plastic surgeon who will perform the reconstruction so we can set the surgery date. Dr. Funk and Dr. Chopra work together frequently and will actually do both surgery and reconstruction while I'm under anesthesia. I'll go to sleep with a cancer breast and wake up with two new cancer free breasts. Amazing!

We are now working with a reproductive endocrinologist at the Santa Barbara Fertility Center. We've decided to move forward with harvesting my eggs so that the effects of potential chemo and the hormone therapy drugs will not take away our ability to have a baby. The cost of the fertility drugs will be covered by the Livestrong Fertility Program, drastically reducing the cost. Soon we'll have healthy frozen embryos, just waiting for the right time. 

So, with all of this going on, Shaw and I also celebrated our first year of marriage. We spent four glorious days camping on Santa Rosa Island. We swam, snorkeled, hiked, laughed, and smooched without interruption or stress. We really needed that. I'll end this post with photos of that trip, one of the most purely peaceful and simple experiences I've ever had.

Sending love,

Jessie

One Week Ago...

I was diagnosed with breast cancer on August 3rd, 2018. I've never had to write anything like this and I've already given away the punch line, so let's back up to the beginning of the story.

In mid-May I felt a bump in my right breast that I just simply hadn't noticed before. Ever since college, where each dorm shower stall had a diagram showing how to self-inspect your breasts, I've done regular self-checks. I did research online and found out that the majority of lumps in women are harmless cysts that come and go with hormones. No big deal. It'll go away on its own. Six weeks later (and a full hormone cycle come and gone) the lump was still there, so I saw my GP who sent me for an ultrasound. The ultrasound was able to tell us that the lump was not a cyst (fluid-filled) but a solid mass. I was told that it was most likely a non-cancerous tumor called a fibroadenoma. 

Here's my first ultrasound. The dark area is the solid mass.

The radiologist even wrote "prob fibroadenoma" on the ultrasound report that was then sent to a surgeon who took a needle core biopsy on July 31st. 

As I lay on the table, watching the ultrasound screen as a needle probed and took samples of the lump in my numbed breast, I had one resounding thought, "This is surreal. This is not happening to me." The surgeon had asked Shaw to leave the room and I was alone with her and her nurse. That moment is haunting. Get this thing out of my body. Whatever it is I want it out. 

As a 28 year old woman, my chances of developing breast cancer are extremely low. A woman's lifetime risk of developing breast cancer is 12.4%, about 1 in 8 women. At 30 years old women have a 0.5% chance of getting breast cancer in the next 10 years. There are many factors that increase your chances of developing breast cancer - everything from your age at your first period to your height. The factor that everyone is paying special attention to is the fact that my maternal grandmother was diagnosed and treated for breast cancer at 40. This family history could prove to be a significant piece to the puzzle.

The results of the needle core biopsy came to me in an email on the morning of August 3rd around 11:30am while I was at work. 

I immediately lost it. I got in my car and drove straight to my husband who enveloped me in his arms.

In the week since diagnosis I have spent hours on end researching cancer and talking about cancer. Waking up every morning thinking this bad dream is finally over. Crying. Floating in and out of doctors' offices. I have met with surgeons, a geneticist, a nurse navigator, a fertility specialist, and an OB/GYN. Hearing 60% of what they say if I'm lucky. 

What we know about my cancer so far from my pathology report: 

• Invasive ductal carinoma (80% of breast cancer starts in the ducts like mine did - invasive means the cancer has now broken out beyond the ducts into other breast area)

• Nottingham grade 1 of 3 (low number is better, means the cells look more normal than not)

• Estrogen and Progesterone receptor positive (this is good and means that my hormones are part of what is feeding the cancer cells. Hormone therapy can block the cancer from receiving my body's natural hormones, essentially starving it)

• HER-2/neu studies pending (we want this to be negative to avoid chemo)

We are anxiously waiting 2 important test results: HER-2 and the genetic report that will contain information about the BRCA gene mutation. These two results will determine my treatment and what combination of surgery, radiation, chemo, and hormone therapy I will need to have. We will have both results within the week and we are anticipating treatment starting within 6 weeks. 

In the meantime, I still feel great physically. I'm exercising almost every day, going to yoga, riding my bike, and have committed to eating 85% vegan and whole foods (give myself flexibility of 3 "cheat" meals per week). My goal is to be in very good shape before treatment so that my body will rock recovery.

In the face of the uncertainty of my next step I have so much confidence. I have confidence in my new surgeon. I have confidence in my understanding of each potential treatment. I know my husband's love for me is unwavering. I feel the love from our family and friends near and far. And I know that although breast cancer is now part of my story it will not define my story. It will all be okay.

Shaw and I will do our best to send regular updates, and your texts and calls are welcome. It's a gift to know that we're in your thoughts. 

With all my love,

Jessie

P.S. If you're like me and immediately looked up every term in the pathology report on the internet...beware. Resources are abundant but not necessarily current or written in an understandable way. I recommend reading Breasts: The Owner's Manual by Dr. Kristi Funk. I'm proud to say she will be my surgeon. Her book was published this year and has the most up-to-date information about reducing cancer risk, making treatment choices, and optimizing outcomes.