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Trying to incorporate fresh herbs (dill) whole grains (whole grain rye bread) and fish (wild caught tuna) into my diet.

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Today I started Ribociclib, aka Kisqali, the CDK 4/6 inhibitor that, coupled with hormone therapy, is going to put my cancer into remission (well, 70% likelihood of this happening according to my oncologist at Mayo and 50% according to my oncologist at MSK.) The drug inhibits growth of the cancer cells by blocking certain proteins. But as with any of the drugs that I have been taking to manage my cancer, the side-effects are a mile long and include decreased white-blood cell count, rash, diarrhea, hair loss and my personal favorite: FATIGUE. It sounds so innocuous, the French word for tired, but doesn't prepare you for the bone-tired lethargic reality of the word. It is my least favorite feeling in the world and the side effect I am the most fearful of - lying in bed when I should be up and doing things.

Of course the first thing I did was to search for first-person accounts of people taking the drug on my Facebook groups, Instagram, Reddit and TikTok and found horror stories of weird rashes, exhaustion, inflamed livers and more. But then, who said any of this is going to be easy? Today is also Manav's birthday, so I am thinking of this as the best birthday gift I could possibly give him: a longer life together.

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One week post diagnosis, this is what I know so far:

1. The nodules in my chest that were revealed in my routine chest CT scan are positive for cancer

2. The pathology shows they have the same profile as the breast cancer I was initially diagnosed with four years ago: hormone positive, HER2 negative. This is good news because it is highly treatable and slow growing compared to other breast cancers.

3. The PET scan showed that the cancer has also spread to my liver and bones (ribs, spine) and the lymph nodes in my chest. But the lesions are tiny because they were detected early and treatment should be able to prevent further growth or spread.

4. The best news I got this week was that my brain MRI came back completely clear. Metastasis to the brain is a whole different world of treatment.

5. No chemo needed! I never want to go through it again so I am eternally grateful that my treatment this time around doesn't include it.

This is the plan for next week (I am planning to stay in Rochester MN for the next week to get this done at Mayo:

6. A cervical spine MRI to see the extent of growth in the spine and determine if I need localized radiation

7. An oophorectomy (getting my ovaries removed) because the cancer is strongly hormone positive and this is an effective first line of defense.

8. Starting endocrine therapy: oral drugs to remove any hormones in my system

9. Starting targeted therapy (Ribociclib) to prevent cancer growth. This drug wasn't even around four years ago which shows how fast medicine is progressing.

Mayo is an amazing place to get treated: the organization and efficiency of patient care is unlike anything I have experienced before at MSK, Mt Sinai or Hartford Healthcare. Appointments are scheduled back to back with minimal waiting, tests are run and results obtained within a day at most. Every tiny detail down to the design of the patient gowns is thought through.

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Routine CT scan:

Nodules in lungs doubled.

Lymph nodes in chest enlarged.

EBUS.

Bronchoscopy.

Abnormal cells.

Metastatic disease.

Doctor, is it Stage 4? Yes, it is.

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How does one explain the loss of some thing so personal as ones breasts? Now that the pain is gone I am left with a whole lot of nothingness.

Every morning I reach for something that isn’t there anymore.

I feel exposed and vulnerable, like a hermit crab without a shell - I am always cold without that extra fat, my heart beats so much louder, my clothes sit closer, my hugs are measured, my posture guarded.

But more than that I feel like a bird without its plume - missing a part of me that made me whole. They may have served their purpose, they may have been losing the fight with gravity, but they were mine. Yet, I have not once regretted my decision to go flat. This body may be scarred but it is all mine.

Every morning I let my hands linger a little longer on the unfamiliar topography. Allowing myself to get used to it in small, manageable doses. The hollow between my breasts is still there and it comforts me. The mole above my breasts is still there too. The space underneath where my breasts used to be is completely unfamiliar territory - the place of underwire and sweat - all things of the past.

My surgeon Dr. Wilson put it best: At the end of the day its just skin and tissue, all the work is in your head. I know it will take time to heal. One day when the itching stops and the scars fade, I will be the hermit crab that has found a new home in my new, beautiful, prouder and stronger body.

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12 days after surgery my second drain is out! My Bloody Mary cocktails are gone! The output was down to just a few mL a day by the end. It didn’t even hurt when she snipped the stitch and pulled out the foot of tube coiled up inside my chest up to my clavicle. The nurse was amazed at how nicely my incisions were healing - the human body is truly a miraculous machine. I can literally see my cells regenerate on a daily basis - the hole from the other drain closed up overnight. Sometimes I swear I can FEEL my nerves reconnecting or tissue healing.

I also went to see an Occupational Therapist who measured the circumference of my arm every few inches from wrist to armpit, for baseline measurements, in case there was any future swelling. She ordered my lymphadema sleeves that I need to wear on my right arm whenever I do any vigorous activity or travel in an airplane, to reduce the risk of lymphadema. She also warned me not to take blood or blood pressure from my right arm, and gave me daily exercises to bring the range of motion for my right arm upto 90 degrees. She warned me against “protective posturing” which basically means: put your back straight! It’s harder than it sounds when you have two huge scars across the front of your chest that are tight and itchy. I’ll see her again on a weekly basis in another couple of weeks when my scars are healed for more exercises.

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One drain out! One to go.

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Love my Marimekko-print drain belt! It’s the little things.

(Also love my husband who has been dutifully “milking” and draining them twice a day.)

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How you know your relationship with your brother-in-law has reached the next level: when he is the first person you tell about your post-surgery poop.

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The hospital is so nice. They let you sleep there, they let you have socks, they let you have a burger! -Orla

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Surgery is over! Let the healing begin! Took my first walk in the hallway, ate my first meal, taking Oxycodone every four hours on the dot, emptying my drains, legs in compression sleeves, hydrating, doing my breathing exercises. Tomorrow morning I see Dr. Wilson who will examine my incisions and clear me for discharge. She said everything went really well and looks good. She took out level 1 nodes and said she got neat, flat closure across the chest. They had to prop me to stitch me back up.

Grateful for an amazing surgical and nursing staff - My pre-op nurse Nalini held my hand this morning and told me I was going to be held by God today, a group of volunteers sent me flowers and a beautiful quilt, Ben isn’t even two minutes late with the Oxy. Even the food is pretty decent!

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Not that I need them anymore because my brows and lashes went from nothing to 12-year old unplucked me in 5 days straight. (Still keeping those lashes.)

PS: my crazy wonderful parents moved to CT after my cancer diagnosis which seemed like a bad idea at the time but not anymore. Parents have a sneaky way of knowing best.

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Magnetic lashes are the bomb.

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DMX

Funny story guys - remember how I said it felt too good to be true that I was getting off easy with a lumpectomy? Turns out it was too good to be true. Tomorrow morning at 6am I am heading in for a double mastectomy (DMX) and an axillary lymph node dissection (ALND.) Like the character in the movie Saw, I have to make a choice between my life or my body part. At my post-lumpectomy visit with Dr. Cody, he explained with his trademark diagrams on the back of the pathology report how my margins were not clean. Lots of the bubbles he drew around a breast silhouette (that looked nothing like mine) had question marks and one had a big fat cross. Then he sent me up to radiology to get magnified mammograms to prove his point. This just felt like a cruel joke - getting a mammogram on a healthy breast is bad enough, but getting one on a breast that has just been split from armpit to nipple and sewn up again two weeks ago, was pure torture. A fellow survivor on my Facebook group likened it to running over a dead animal (this is why I love these ladies - that made me LOL!)

Dr. Cody’s verdict after seeing the mammogram was that even he, the famous breast conservationist from MSK, recommended a mastectomy. Even if he got the positive margins, there would still be too many far-spread calcifications left behind. (Hello Doc, the calcifications were there since the beginning, so then why did you suggest a lumpectomy?)

I was feeling less than confident with the whole staff at MSK - swanky hospital, efficient service, top notch research but the personal touch was lacking. At my post-lumpectomy visit, I was not asked how I was feeling or the range of motion in my arm. I didn’t even realize I had developed cording, which affects a quarter of all breast cancer surgical patients and is a result of scar tissue developing under the arm where the lymph nodes are removed. A simple exam on their part would have proved that I couldn't stretch my arm above my head or reach out to pick up something without pain, which are symptoms of cording. If it wasn't for my groups, I wouldn’t even have known what I was experiencing or how to make it better (PT, massage, heat and stretches to increase range of motion.)

Feeling disillusioned with my doctor, and upon the advice of my oncologist brother-in-law, I got a second opinion from the surgeon who practises in Hartford. Dr. Niamey Wilson came highly recommended by my beloved oncologist Dr. DeFusco who was in charge of my chemo treatments all summer. I had met with her over the summer when we were going back and forth between having the surgery in NYC or CT. We finally settled on NYC because MSK had the best technical capabilities including frozen section and so I could be near the kids during their school year in NYC. Dr. Wilson agreed that mastectomy is the way to go. She also thought that more nodes should be removed in addition to the 2 sentinel nodes removed by Dr. Cody.

At this point I had way too many decisions to make - Single mastectomy or double? Reconstruction or not? Sentinel nodes or Axillary node removal? New York or Avon, CT? After soul-searching for a week, long walks in Central Park and conversations with other survivors (Thanks Laura, Anu, Deb) I finally decided: Double, because I don’t want to look like Dr. Wendy Sage from The Simpsons (much as I admire all single-breasted women.) Flat, because I would rather have no boobs than fake boobs that have no sensation. Axillary node removal because cancer is a sneaky fucker and I will play hard (even if it means I have to wear a lymphedema compression sleeve 12 hours a day) - I tried to get away easy and it didn’t work so I will give it all I have this time around to make sure I win. Avon, because I need the mental and physical space to recover and even though it feels selfish to think of myself first, it is what my kids need from me in the long run.

So, here I sit, in my big empty house in Avon, with all the space I need and crave, to come to terms with my loss. I grieve for the body I have to give up, and look forward to the new person that will emerge after the scars and the trauma has healed. I ask myself Why me? And the answer comes to me: Why not me? This is my path to tread. I am not brave, I am not a warrior, I am just a woman taking one more step forward because that is all we can ever do.

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Lumpectomy and Sentinel Node Biopsy (SNB) in the books baby! I checked into the swanky Josie Robertson Surgery Center on the UWS at 10am on Oct 12th and was home by 3:30pm, the same time Leona got home from school (she walks home from the bus stop herself now.) After a lengthy intake procedure and tons of medical history questions that I was sure I had filled out online, I gave Genie a hug and walked into the OR. I was super calm until I saw the sterile, white, over-lit, double-height space that had as many monitors as a newsroom, all with images of my right breast displayed on them like a sports mascot on a Jumbotron. The room was frigid and I was so grateful to lay down on the stretcher, under a heated air-filled plastic blanket that looked like the air-pillows that come in your Amazon box. There was a flurry of nurses and doctors all trying to be upbeat but also wasting no time in getting me under so they could move onto the next patient. When Dr. Cody showed up for a minute, I was so grateful to see his familiar face that I immediately burst into tears, seconds before going succumbing to the anesthesia. Next thing I know, I am being wheeled into another room, still crying, this time with happiness because it was over! An hour later, after I had drunk and eaten something, and peed (electric blue pee thanks to the dye they injected in my lymph nodes) I was ready to leave with my extra strength ibuprofen and Tylenol.

There are three incision sites: one radially outward from the nipple for the lumpectomy, one under the armpit for the lymph nodes and one where they removed the port on my chest. I am so grateful to be rid of the port! The incisions are painful and it hurts to open doors or bottles, but the painkillers do the trick. I prepared by buying a mastectomy pillow on Amazon and plenty of front opening shirts and bras. Thankfully I don't have to deal with drains since only my sentinel nodes were removed, not the axillary nodes. The pillow is genius because it protects you in case you roll over to the affected side while sleeping. In my case it also protects me from the over zealous hugs of my kids!

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The universe is sending me signs that all will be well.

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