Post-op update & wife brag

Hi all – Just wanted to give you a quick update on how Rachel’s doing. We’re almost a week out from the exchange and things are going steadily better day-by-day! ¬†This morning Rachel had her post-op appointment and was able to get the drain out ūüôā ¬†Overall, everything’s looking super healthy and barely looks operated on. ¬†Which is pretty amazing considering what Rachel went through six days ago.

With the drain out, pain culprit #1 is out of the way. ¬†In a couple of days Rachel’s strict schedule of pain meds will taper off – and if today’s any indication, her energy will probably rebound quickly too. ¬†Tonight she was able to shower for the first time since the surgery (I swear she wasn’t stinky one bit, she had me check a few times so I can confirm that fact).

Over the past week, we’ve had a steady stream of nursing school¬†homies stop by to hang out. ¬†This has been awesome for both Rachel and me. Having these amazing friends over at the house has allowed me to run errands, get some needed sleep and gives Rachel an enthusiastic buddy to watch¬†trashy¬†reality TV¬†with. They’ve also been able to change the occasional drain and help Rachel get from the couch to the¬†ba√Īo¬†and back. ¬†The UCLA nursing student community is incredible and we appreciate you so much!

But being a little loopy and having acute pain hasn’t stopped Rachel from being the badass that she normally is. She’s continued to be an amazingly supportive to all those she loves during this past week. In between naps, she’s been on her phone staying on top of everything from school, appointments, bills and keeping family up-to-date on how she’s doing.

Through this entire journey I’ve been completely blown away by the strength of my wife. ¬†No matter the challenge Rachel just steps up like a boss. ¬†(Gonna brag for a moment.)

Most ridiculously challenging academic quarter ever (I know you’re feeling me MCEN’s) six weeks after mastectomy? ¬†No problem: she passed all her courses handedly and served awesomely as president of her graduate nursing association.

Three physically challenging clinical rotations while recovering from mastectomy?  Not an issue: Rachel helped women give birth just days after starting physical therapy and came home from every exhausting shift more excited for her future as a nurse, being able serve patients everyday.

Keeping focused after receiving news she had gnarly¬†mystery tissue damage¬†and then a resulting¬†literal hole in the boob¬†– and receiving the latter news a week before finals and going into surgery? ¬†Ain’t no thang: Rachel made it through all this by slugging it out every single day with an amazing attitude that got more positive even as the intensity mounted.

And not to mention that she absolutely loves chatting with and hopefully helping anyone that hits her up about mastectomies/cancer prevention/cancer treatments.

So I’m pretty sure I’m married to superwoman. ¬†I’m cool with that not only because I get a superwoman nurse as my bestie and life partner. ¬†(But also because I’m expecting all of our children to be super athletes who’ll surely hook us up with their signing bonus money). ¬†Not sure how Rachel does it and over the past few days I’ve been able step back a bit and just observe this woman’s greatness.

Exchange completed!

Hey all!  Husband Adam here.  Rachel had a 4.5 hour surgery yesterday and it was a big success!  She got home last night and has been resting well since.

The really great news is that she got two implants (as opposed to having to keep one of the tissue expanders in). ¬†Also, the recent¬†tissue damage that popped up in October healed well!¬† The surgeon tested the skin from the inside and was able to verify that everything grew back healthily.¬† The Dr. used allograft on the inside of that breast and is very happy with the results of the procedure ūüôā ¬†Another big plus is that Rachel only needs one drain. ¬†These mofos were the cause of much of her pain during the mastectomy – so when the doctor said she just had one drain AND she got the implants, I was like ‘hallelujah! & Happy Chanukah!’

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Last night Rachel was even able to sleep in bed for over five hours! ¬†It took two weeks for us to get to this point post-mastectomy – so another thing we’re both very thankful for. ¬†The biggest priority over the next week is lots of rest to heal and prep for the post-op appointment next Monday.

Thank you so much for all of your support and love during this journey!  Either Rachel or I will post updates soon and I hope you have a great week and Happy holidays!

#superhero

Rachel’s almost three weeks out of the mastectomy and she’s almost out of the woods. ¬†Rachel’s pain is about 10 times better than it was this time last week and she’s way more independent (besides having to keep her arms below her shoulders – think arm positioning like John McCain & a t-rex, but in the most rockstar way imaginable). ¬†She (and I) are now getting somewhat full nights of rest. #blessed #hallelujah

It seems like everyday now we’re celebrating new little milestones. ¬†Like when Rachel put on her shirt & seatbelt for the first time since the surgery. ¬†She can also now get settled on our couches and bed without help. ¬†Rachel’s 2 hour excursions have spiced up too. ¬†On Tuesday (less than 2 weeks out from the mastectomy), Rachel went to UCLA School of Nursing to meet with a faculty member. ¬†She wore regular clothes and much to my surprise, put on a blazer for the meeting. ¬†If I was her at this point, I would be a cross between a helpless puppy and Gollum. ¬†Barely able to move out of bed – let alone planning the next academic years work as the Co-President of my graduate student association. And Rachel’s boobs are looking super healthy and, besides a sorta lumpy looking temporary expansion implants, barely look operated on.

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The whole ‘2 steps forward 1 step back’ thing is still holding up unfortunately. ¬†The other night Rachel’s skin started to get really irritated around the tape that’s still on her from the surgery. ¬†The next day it got way itchier and once I got home from work had broken out into full-on hives across her stomach and back. ¬†Immediately after the itchiness started, Rachel began doses of Benadryl, which needed to be upped once the urge to scratch become too much.

What happened then (because Benadryl + other post-surgery meds = sleepy time), was Rachel getting totally zonked out. ¬†Even after the tape came off yesterday at the surgeons office, the itchiness has persisted. ¬†The good news is that the Dr.’s appointment was for her 2nd expansion. ¬†That was super successful and the tape being gone has brought the irritation¬†down, albeit very slowly. ¬†As I write this, the incredible Rachel is now on her 16th hour of sleep out of the last 24 hrs. ¬†Which is why you’re hearing from me again ūüôā ¬†Although if you are following FunkyGenes on twitter you’ve seen that she’s still tweeting away in the few hours she’s been up today.

The bottom line is I’m married to a beautiful superhero. ¬†She’s done something remarkably difficult and extremely brave, yet in the most public way possible. ¬†By sharing her story and engaging with a tremendous community of other previvors & survivors, and other storytellers¬†she’s doing all she can for the cause of cancer prevention, education and advocacy. #mywifeismyhero

Rachel’s Recovery p.4

Hey everyone – things are going well and Rachel’s been moving steadily forward since our last post. Rachel’s energy is on the rise and she’s getting progressively stronger by the day. She’s been eating from a more eclectic menu, which includes cheese, salami & crackers and jook (Cantonese comfort porridge made by mom, Anna) – as opposed to pudding, apple sauce, toast and more pudding. She’s also sleeping more consistently – for periods of more than two to three hours. The Bravo viewing has remained steadily high and nearly constant (#teamvicky #whatishappeningtome).

We’ve also figured out ways to make the drains¬†a little less painful. I recognize the necessity of these things, appreciate their importance to the healing process, yet hate them with a vengeance. They remain the main obstacle to getting/holding Rachel’s pain level lower than a three, which is currently my main mission in life. To accomplish this we’ve tried to keep to the exact pill schedule set out by Rachel’s doctors. This might seem easy enough in theory: take the pills on time and write it down on a chart. What’s not so easy, as anyone scheduling a bunch of doses for a patient knows is getting the timing right for ~20 pills per day, most of which need to be taken with food. Getting this right from 10pm – 7am is particularly tough for obvious reasons. Organizing all this jazz via Google Docs has super helpful. (If anyone’s interested hit up the contact section and we’ll share the template w/you.)

I’ve been able to grab much needed sleep when Rachel’s nursing friends come over. This is a luxury that I’m grateful for – yet getting less than 3-4 hours of sleep at time has been the norm for the past 2 weeks. Same for Rachel of course. At this point she’s got to wake up even when she’s sleeping comfortably in order to take her pills on time. We’ve played with moving non-antibiotic doses back a few hours – but at this hasn’t been helpful, Rachel just ends up waking up with tons of pain. So for now uninterrupted sleep is going to have to wait – and we’re counting down to the moment when the drains come out. This might come tomorrow, Thursday!

Going through this journey has opened my eyes to the complexities of serious medical recoveries, patients and their caretakers. I now understand that caring for people who have endured serious medical procedures/are very ill is tough, full-time work and can be emotionally jarring if it’s your loved one. Rachel and I spent 9+ months prepping for this procedure. We’re both organizers by nature with access to an amazing/highly skilled community and really supportive families. We recognize that this isn’t always the case and want to help folks on similar journeys as much as we can. With that said, in an effort to make sure all of Rachel’s posts on topics relevant to BRCA Education & Mastectomy Preparation are as accessible as possible, we’ve tagged the pages accordingly. Downline FunkyGenes will also have a section dedicated to providing resources for people facing down a mastectomy and/or a BRCA diagnosis.

One last note, we’re happy to report that Rachel received word from her doctor that her pathology report for the mastectomy came back clear. Even though this procedure was preventative, studies have found that in similar cases a surprisingly high number of pathology come back showing malignancy. Another big reason to be thankful.

Rachel’s Recovery p.3

It’s day five of recovery and Rachel’s progressing well. ¬†Yesterday, after her hyperbaric oxygen therapy treatment, Rachel felt strong enough to trek upstairs to take a shower. ¬†It was definitely a milestone, since more than five minutes of activity has been wiping her out. ¬†Some of Rachel’s friends from nursing school have been helping take care of her during the day. ¬†One of these buds helped getting Rachel in and out of the shower and with the surgical dressings ¬†The whole process would have been really tough for just one caretaker – and Rachel’s tiny & I’m a big dude. ¬†I couldn’t be more thankful for these amazing friends in Rachel’s life. ¬†Afterwards Rachel felt great – and later that night I did my very first ponytail (not such a bad job, eh?).
hairOne of the trickiest parts of the recovery so far has been Rachel’s drains. ¬†These are the devices that help manage swelling post-surgery. ¬†They look like little plastic scrunched up grenades w/valves similar to any bike bottle at their ends. ¬†They’re attached to little tubes and need to be emptied & measured regularly. ¬†There’s more to them, but I’ll spare you the details. ¬†But basically the goal is to have less drainage over time and Rachel’s way beyond her goals.

So at first these bad boys were daunting to even look at. While Rachel was in the hospital, I observed the nurses effortlessly emptying them and making sure they didn’t get in Rachel’s way. ¬†After some education, I found out that these are pretty common after major medical procedures, which really helped put them into perspective. Soon, as my hesitations/fears began to wade I started to creep closer and closer to the nurses caring for the drains. ¬†After realizing that the process of taking care of them was fairly easy (and summoning past lifeguard/first aid training), the whole cleaning/upkeep process has become routine.

Not surprisingly these little f*ckers have really started to hurt. ¬†Rachel’s left one has become a particular thorn in her side (couldn’t help myself) and is consistently the reason her pain score above a 2 or 3. ¬†Today Rachel talked to one of her doctors and she advised that we tweak the dressings around the pesky drain. ¬†With the help of two nursing friends (and Mom who got us our supplies) we managed to do some redressing, which seems to have alleviated the worst of the pain for now. ¬†We’re crossing our fingers that this will continue to provide Rachel relief.

Overall, I’m just so thankful that Rachel was so proactive going into this journey. ¬†From the physical preparation to the way she’s rallied her community to help – she’s really given herself the best chance possible at bouncing back quickly. ¬†I couldn’t prouder to call Rachel my wife.

Rachel’s Recovery p.2

Hi everyone –¬†husband Adam here. ¬†Just want to give a quick update about Rachel’s recovery. ¬†In short, everything’s going great. ¬†She’s definitely in pain, but as one of her surgeons explained, things for the next two-three weeks are going to be ‘one step forward, two steps back.’ ¬†Basically, any new stuff she does hurts. ¬†But then it gets easier. ¬†Like getting up to go to the bathroom, walking back & forth from the bathroom and then getting back into the recliner. ¬†It’s really tough and tiring at first, but gets easier every time.

It’s really cool to see all of Rachel’s preparation (workouts, special diet, listening to so many brave women who have been through this before) helping her bounce back from every bout of pain. ¬†Staying on top of her meds has also been key. ¬†As well Rachel having an incredible medical team, mom and community of friends and family that have rallied around her. ¬†Tomorrow Rachel’s looking forward to another round of hyperbaric oxygen therapy, upgraded meals beyond bland soup & pudding (especially from our friends at¬†Chandni in Santa Monica) and maybe a trip upstairs to sleep in bed. ¬†We’re going to continue taking things slowly and focusing on recovery – and staying as pain free as possible.

We’ll keep you updated over the next few days and please continue to send Rachel good vibes, love and prayers!

Rachel’s Recovery p.1

This is Rachel’s mom, Anna, guest blogging. I’m a writer, but blogging is not my thing, so you probably won’t have as much fun reading me as Rachel!

To bring you up to date, the mastectomy and reconstructive surgeries took place yesterday ‚Äď Tuesday. We checked into St. John‚Äôs Hospital at 5 a.m., barely awake and totally hyped up at the same time. After filling in some paperwork, Rachel was taken back to be prepped. The anesthesiologist, Dr. Miller, immediately inspired confidence. He seemed like the kind of physician who is not only expert in his field, but truly cares. We knew that even though Rachel has some medication allergy issues, she was in excellent hands. We kissed Rachel and told her we‚Äôd see her when it was all done.

The surgery began around 8. We waited, trying to make small talk, but filled with tension. At around 11 a.m., Dr. Funk, Rachel‚Äôs breast surgeon, came out to tell us that the first part, the actual mastectomy, went, in her words, perfectly. No need to say that Adam and I were thrilled. We then settled in for the next part ‚Äď the reconstructive surgery. This took another 4 hours. At around 3, Dr. Grunwald came out to tell us the surgery had gone well and Rachel was in recovery. Adam went to see her first and came back to let me know that she was in surprisingly good shape. I then went in to see for myself ‚Äď and he was absolutely right, and then some! She was chatty and joking (okay, the drugs might have had something to do with that).

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Once she was ready, we moved up to Rachel‚Äôs room ‚Äď this is a beautiful hospital and the room is great. Adam stayed with Rachel all night. And now it‚Äôs The Next Day.

Rachel actually transferred to sit in a chair for a half hour (pictured here). Might not sound like much in the normal world, but after major surgery, it’s HUGE. We’re all pleased with her progress.

And may I add a personal big thank you to Dr. Kristi Funk and Dr. Tiffany Grunwald ‚Äď incredible doctors and also incredible human beings. When Rachel is ready, she‚Äôll dictate her next blog and it will be back to Regular Programming.