Dear family and friends, 

Greetings from the DIEP side. 

I’m a little hazy still, but much lighter and less anxious than I’ve experienced in years. And hopefully, each day will continue to be a little easier than the day before. Today is 3 weeks post op. Thanks for all your well wishes and different ways of showing support:) I feel loved. If I didn’t respond to you personally, I did in my head, and have not realized it wasn’t sent for real. I’m tossing my hands up in the air and saying “painkiller cocktail?”, and hopefully I’ll do better with your next email/text/call. 

For better or worse, we introduced StarWars to the kids. We have watched episodes 4, 5, and 6. One each week. And now the background noise to recovery is a never ending battle of “buew buew buew” and endless questions about the world George Lucas built. Maybe we’ll finish the entire collection before the new year. 

I went into this surgery calm and not scared, a stark difference from the first two this year. Given I’ve known my genetic status since I was 26 and assumed “someday I would do the surgery” there has been a lot of build up…and here we are. ON THE OTHER SIDE! 

Surgery/recovery highlights: 

• Pathology came back benign! We got the “ticking time bombs” off before they exploded and failed me. Yippie! Turns out pathology was filled with “overactive breast tissue” resulting in benign lumps and bumps, twisted milk ducts and twisted blood vessels…all things that put me at a “higher risk for breast cancer” even without a known genetic mutation. But as my oncologist said, “We knew you were at high risk because of BRCA2, and all that tissue is now gone, so those findings don’t matter”. 
• It was an 8.5 hour, complication free, boring surgery (yippie!) 
• I was in the hospital for 5 nights. I made it home on Halloween in time to send off two trick-or-treating dragons. 
• Drains came out in under two weeks. A lovely surprise. I never ended up naming them, I’m not upset about this lack of relationship. 
• Physical progress is slow. Looking at a week by week basis is more encouraging than day by day.  Last week I couldn’t carry my filled water bottle from the kitchen to the bedroom, this week I can. Notable firsts include “the first time I opened the fridge” and “the first time I could draw with Ethan” and “the first time I reached for a serving dish being passed to me and didn’t wince”. Progress and healing in the smallest ways.  However, the repetitive motion of sorting six decks of cards Owen threw together was physically taxing enough to warrant a nap. To stay positive, I am flexing my noticing powers of micro improvements.
• I am likely out of the woods regarding complications. In theory, things could still go wrong. Thankfully we have so much support from family, it is actually possible for me not to overdue it (which is a common reason for complications at this stage of healing). Thank You Team Caregivers. This would be a whole different impossible level of suck without you. I rest, and do my OT exercises, and eat all meals with the kids at the table, and sleep in a power lift recliner (because I can’t use my abs to roll, a necessary movement to get out of bed) and repeat. All markers of healing point to a continual recovery without any major setbacks.
• Ethan is the sweetest nurse. Very attentive, “Mama if you need me to fix your pillow, just call my name. Or get you water, I can take a chair to the sink and fill it up for you”. Owen? Total second child threenager   

TMI details. And long. Pretty much answering the common questions I get. No worries if you stop now. Warnings include discussion of pain, and my breasts (duh):

Where do I even begin? This recovery is a mental game. And it’s a roller coaster. A long, multi month ride. Yes, pain sucks, but there are drugs to manage pain. I was disappointed I never got one of those on demand painkiller drip clicker things. The UW nurses were amazing, and attentive, and worked with me until I was “comfortable”. Those are big air quotes. 

Mike was able to come back to my intermediary recovery room, once I was awake, even though he wasn’t supposed to see me until I was moved into my long term recovery room. But my room wasn’t ready yet. Big thanks to the nurse (Travis?) who skirted the rules, and made it possible for us to be together quickly. The first night in the hospital they used a Doppler to check the blood flow of my new breasts, on the hour. This woosh woosh brought me back to my midwife’s office when Mike and I got to hear Ethan and Owens heart beats for the first time. This positive association made the hourly wake up a little less annoying. 

Since I’ve been home, I’m able to keep ahead of the pain. Thankfully I’m now off all the “hard drugs” with the exception of a muscle relaxer at night. It’s really unfortunate I’m in a state where THC isn’t part of the doctor prescribed pain management plan. THC has allowed me to get off Oxycodone very quickly. I’ll add this to my “things wrong with the medical system” soap box that grows with every few appointments. 

Pain might pick up as nerves start to wake up. I’m told week 4-5 is often when nerve pain peaks. I’ve only had one zinger so far, and it took my breath away. Thankfully it goes away as quickly as it comes on. Months to years will tell how much sensation my new breasts have.  I’m optimistic I won’t be numb. The surgeon’s were able to preserve a nerve in one breast, and both breasts had nerves transplanted/reconstructed along with the new tissue.  

The most surprising pain has been the intubation cough pain (not “incubation” as Oxy Jessie says). When one has a tube down your throat for 8.5 hours, one wakes up with a cough that can’t be satisfied for days. And with a hip to hip incision, coughing is a 10 on the pain scale. The first two weeks were the worst. The good news? This is in the rear view mirror. 

And drains? Those are also miles behind us! The nurse who removed my drains commented, “You can always tell who comes into surgery fit”. I’m not sure if she says this to everyone to raise their spirits, or if my pre-hab workouts really contributed to the short drain duration. Another reason why preventative surgery is a plus. Doing this intensive surgery after chemo or radiation does not set you up for a smooth recovery. If you ever have major surgery, and are healthy enough to prioritize exercise in the months leading up to said surgery. Please do. 

Today’s pain is in my chest, where they removed a small bit of rib (~1-2 cm I believe). This allows the surgeons to attach the blood vessels from my tummy to the blood vessels in my chest, so the harvested tissue can live in its new home. Things they told me during consults, but didn’t register until now. 

I’m trying not to be frustrated with how little I can do. And instead be grateful for all the support. And enjoy watching the boys have so much attention from extended family. They are eating up uncle time.

This is the long game Jessie. This is temporary. This sucks and that’s okay. And this too shall pass. My mantras. 

Today’s rest (and tomorrow’s, and 5-9 more weeks of tomorrow) is so that in the future I can make dinner, and fold laundry, and participate in family kitchen dance parties. So I can finish my book. And plan epic family trips around the book tour (do they even do book tours in a post COVID world?) So Mike and I can climb Mt. Kilimanjaro on our 40th (ish) birthday.  This recovery blip is so if my kids ever have surgery as adults, I can help them wash their hair, and get in and out of the shower safely, just like my mom is doing for me. (My) Mom is the best. 

Speaking of showers, two absurd tangents:

One…that shower chair we got on the side of the road? Fits great in the basement walk-in shower. But it is too big for our main floor tub/shower. Even though months ago I asked about post surgery restrictions, I only learned stairs were a no-no the day before they released me home from the hospital. Oversight? A 5 gallon bucket turned upside down with a towel is a great “small space” shower chair. 

Two…The night before surgery, in the shower doing the gross pre op soap scrub, I placed my hands on my breasts and said “Thankyou for attracting my mate, and feeding my children, you are going away tomorrow” and then I placed my hands on my belly and said “tomorrow you are going to a new home. Thrive there. You’ll be more appreciated in this new home”. It’s funny to me now. At that moment I was life or death serious. 

That’s enough for now. I’ll probably send another update in a few months when I’m fully healed, to close out this chapter. 

As always, if you don’t want any more emails, just let me know. If you/your family/friend has questions about surgery in general or hereditary cancer risk, ask away, I’m an open book. 

I will be fully healed. There is no try. Either do, or do not. I choose do. Everyday. 

XOXO,

Jessie 

#BRCA #BRCA2 #EmailToFriendsNFamily