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.