Hi Friends and Family, 

Tomorrow (Wednesday 10/26/2022) at 8:30am CT is my surgery OR time. Please send me good thoughts, or prayers, or visualizations of a complication free surgery and gentle healing. Send them in your hearts, via text, via email, or pop a note in the mail. Please don’t expect a response for a long while. I’ll be in the hospital for 3-5+ days before I return home, heavily drugged. 

Ways you can support me: 

1) Actually think of me tomorrow:) 

2) Provide a meal while I recover.

3) In the next few days or weeks, send me an update on your life. I will get sick of binge watching shows, and anticipate I’ll be frustrated with my post surgery brain fog and physical limitations. Distract me! Nothing is too small or mundane, stupid or serious. I’d love to know what has been going on in your life. Pretend we are catching up over our favorite shared beverage. Even though I might not have responded individually to the last note you sent, it lifted my spirits. I read each one many, many times. 

Surgery basics: 

• This is a prophylactic, skin sparing, nipple sparing, mastectomy AND immediate breast reconstruction, using my belly fat. Using belly fat for reconstruction is called a DIEP (pronounced “deep”) flap. 
• There will be three surgeons. A breast oncologist surgeon, who will remove my breast tissue. And two plastic surgeons who are also microsurgeons (i.e. they are experienced in connecting 4mm blood vessels to other 4mm blood vessels). People travel all over the midwest and the country to work with my surgeon’s.
• This surgery averages 8+ hours. 
• I will be in the hospital for 3-5+ days. 
• I will return home with drains. Many drains. Maybe I’ll name them this time, since they’ll be around longer. Reports range from 10 days to weeks. Gross. 
• The recovery is (a minimum!) 8 weeks. Sometimes 12. During these months of restrictions, I am unable to lift anything more than 5 pounds, exercise, push/pull (i.e. no strollers, no sweeping, no carrying kids… aka not doing my job as mom). I won’t be able to lay flat for weeks. Nor will I be able to use my arms or abs to get up from sitting for weeks. Fingers crossed I did enough squats and hills these past two months. 
• Many women say it takes 6-12 months for their bodies to settle and feel strong again.  
• I may or may not have sensation in my new breasts. My surgeon’s will preserve and move nerves, if they are able. If. This is a new approach to mastectomies and reconstruction. I hope that in a few years this will be the standard of care, and not experimental. It has already come a long way in the two years I’ve been doing surgeon consults. No one wants to be numb for a hug, or a snuggle, or injure themselves because they can’t feel pain. 
• It is possible I’ll need additional surgeries (much smaller and outpatient) related to reconstruction. Hopefully not. 

The TMI details…

This double mastectomy and reconstruction journey is a mindF*C%. It’s hard to relate to. I have oncologists, but I don’t have cancer. I have plastic surgeons, but I’m happy with my body and don’t want to change it. I have an 8 week lifting restriction (similar in length to a C section), but no new baby smells to take the edge off. It’s okay if you can’t relate to it. I’m grateful for the space you hold and for those in my life who can relate to the bizarre choices one navigates while on the path to previvor. (Previvor is a word for folks who are genetically high risk for cancer, but don’t have cancer. Sometimes it’s used for folks who have decided to undergo preventative surgery, and sometimes it’s used for any one with the knowledge of a high risk status, as it comes with a unique set of health challenges and a medical team).

For the past two weeks I’ve been eerily calm. Which has been fantastic. I’ve done everything in my power and influence to have a positive outcome from this surgery. It’s out of my hands at this point. So I might as well enjoy the last 70 degree weekend with my family. Which I did! We spent the weekend up north, picking apples, raking leaves, and even got the paddle boards out! But then Sunday night on our way back to Madison, the nerves started. I am f*&^%*%$ terrified of this surgery. There are complications that are awful, and more common than I’d like to admit. I’m not going to share these details, because that energy doesn’t need to be put into the world.  

Even once this surgery is complete, and this is a textbook, complication free event, it’s scary. The recovery journey is hard and long. The unknowns are endless. Being under for 8+ hours. With about 4 feet of incisions that need to close and heal. I will be a Frankenboob, just in time for Halloween. And then I have a minimum of 8 weeks to heal enough to begin exercising, to only then begin to build strength and help my body relearn its new configuration. 

Even though this is terrifying, I get to wake up tomorrow without my BRCA anxiety. YEAH. Yippie. Rainbows and unicorns. Cocktail at sunset, with the waves gently lapping at your toes. The majority of my anxiety from knowing my BRCA2 status will poof, disappear, and be tossed out with the medical waste (after pathology looks at all of it).

The women who have gone before me, all shared the month leading up to surgery is worse than the actual event and recovery path. So I’ve already done the hardest part. Because when I wake up from this surgery tomorrow night, my lifetime risk of breast cancer will no longer be 87%. It will be 1%-4%.This is less than the average for all of you double XXer’s. The average risk of breast cancer for a woman is 13%. My new chance of breast cancer will even be less than a BRCA2+ man’s chance of breast cancer (5-10%). 

So I’m f*%$# excited for this. This space. The freedom. The ability to dream decades ahead. Of course none of us have any guarantees with how long we’ll live, or the quality of our days in these bodies. But when you have an 87% chance of your airplane crashing, you do everything you can to get off that airplane. You are not thinking about a 5 year, or a 10 year, or a 30 year plan. And tomorrow, after this surgery, I’ll be off that spiraling airplane. 

And exhale. 

Yes, there are still other cancer risks and extra doctor’s appointments related to BRCA2+, but they all pale in comparison to this. I’m not going to go into these details, for I get a few years off from visiting the Carbone Cancer Center. I’m going to enjoy figuring out what it looks like to not organize my life around visiting a cancer center more than I visit my hair stylist. 

You might have folks in your life who have had mastectomies and have chosen to go flat or have reconstructed with implants. Their healing journey is very different from someone using their own body tissue. All the options have trade offs. None are an obvious choice. If deciding to reconstruct, the biggest pro of body tissue, is just that, it’s your own body tissue. It’s not a cold, foreign object with a shelf life of 10-15 years that needs to be surgically swapped out. 

Enough reality for now. I’ll leave you with a sweet story…

I was eating apples and peanut butter (because protein at every snack and meal) with 5 year old Ethan: 

“Ethan, I want to talk about my surgery that is coming up. Nana, and Grandpa, and Uncle David, will be in Madison to help take care of you and keep you safe while Daddy is at work.”

“Like last time?”

“Yes, sort of like last time. One difference is, I’ll be in the hospital for 3 to 5 days before I can come home”

Ethan had a face of concern I’ve never seen before. So I asked if he was okay. 

He finally spoke, “So you mean 4 days?” 

I started to laugh, “Oh Ethan, I mean, I might be at the hospital for 3, or 4, or 5 days, before I’m able to come home and see you in person” 

“What about 6 days?” he asks.

“Yes, it could also be 6 days”

“Okay.” 

And he quickly pivoted our conversation to something less math-y, and more play-y. 

Thanks again for all of your love and support. It really makes a difference. My people are showing up. I am grateful. My parents will be here for 8 weeks. My brother for 4. Mike is a rock. And the kids are excited about having Uncle David here for Halloween. I have no idea when I’ll send another update. Don’t be concerned if it’s not for a month. In the meantime, feel free to reach out. If I’m able, I’ll respond. I sleep with my phone off, so don’t worry about waking me. If I don’t respond, don’t take it personally.

If it’s helpful to share this with someone in your life, please do. 

See you on the DIEP side. 

Love,

Jessie 

#BRCA #BRCA2 #EmailToFriendsNFamily