Week 7 A.D.
I started this blog before my first appointment with my surgeon. I was almost six weeks into my journey and I was scared, mad, confused and constantly doubting my own feelings and sanity and needed to get the constant sense of anxiety out of my head. I didn’t know if anyone was going to read it, but I thought a lot about what I was struggling with the most: the waiting, the unknown, and fearful anticipation. It seems like we always hear about the impacts of cancer treatment, but what about the impacts of diagnosis and planning the treatment.
I’ve read blogs and posts from other women who have experienced breast cancer, but I haven’t heard much about the emotional and psychological part of their early journey. The impact of a new diagnosis and the waiting. The part before and in between appointments. The part when you dont have answers—when you’re just waiting for the fight to start, knowing that cancer is in you and trying to kill you, but you have to sit patiently and wait for the next step. The part where you know this is going to be one of the hardest and possibly most painful things you’ve ever experienced, but your brain can’t even yet register or understand the extent of how that truth will play out. And the details! I never knew how much minutiae goes into breast cancer—the analogy “the devil is in the details” had to have come from cancer. I just want people to know. Not for sympathy or to just bitch and moan. I hope my sharing helps just even one person. If nothing else, for them to know that they’re not crazy or unreasonable or overreacting or dramatic. Cancer is A. LOT. Even if it’s the “kind of cancer you want”, it still horrifically sucks knowing you’ve been dealt the sourest of lemons for boobs.
When I started receiving messages of encouragement from people who read my blog posts, I thought to myself, maybe this was the right thing to do. Survivors had been reaching out to me—and oof, some stories have been hard to hear or follow, but moving. So many encouraging, some unnerving. The men though! I did NOT expect men. To reach out to me to share their stories. It’s been a good reminder of how breast cancer doesn’t just impact the patient, but the spouse, the brother, the brother-in-law, the friend. I am so grateful to every person who is taking the time to read and reach out. Seriously!
My New Year’s Eve meeting with the surgeon weighed on me. I fired off another post that evening to get my mind off the heavy direction my care plan had taken—a double mastectomy. And, it was New Year’s Eve and I didn’t want the kids to see the fear and stress I was carrying, so I had to unload somehow. We had a low key family night that night with a smorgasbord of snacks and sparkling grape juice, and played Cards Against Humanity while New Year’s Rockin’ Eve aired in the background.
I know, you’re probably clutching your pearls that we allow our kids to play that game but, Zander doesn’t know what most of it means, we just tell him never to repeat it because it’s bad. If we’re all honest, kids learn about most of this terrible crap in school from friends and usually repeat it with a lack of awareness of definitions. I’d rather they hear some of this stuff with their parents giving context on the inappropriateness so they don’t ignorantly blurt out something crude in public.
New Year’s Eve is all about bidding farewell to the old year and to ring in a better and brighter new year. But that night I wished for my kids to have a great new year. I know this new year could possibly be my worst…and I’ve had some doozies in my lifetime. (Stories for another time) I envied the excitement in the kid’s eyes when the clock struck midnight and the joy from my son, Zander, as he ran through the living room blowing two party horns as loud as he could. I couldn’t help but smile at them, not with them. I realized then, the importance of preserving the joy in our home, even if I struggled to feel it.
It was hard to focus at work that Monday after the surgery appointment. It’s actually quite fascinating how each week has managed to feel worse than the one before it. Like the shit just compounds on top of itself. The fear and anxiety, the feelings, the anticipation of painful recovery and the mystery of further treatment ahead. I have to wonder if this will be my new normal. It’s not like I’ve really imagined what it would be like to have cancer, but this is something I could not have ever understood without actually living through it myself. But—I had shit to do. So, I powered through.
I got a call from the plastic surgeon’s office that day to schedule my reconstruction consult. The plastic surgeon was going to be out of town for a bit in January, and his first available appointment wasn’t until January 26. Yep. Only four days before surgery day. Nothing like having to make last minute, life altering choices.
“It is what it is,” I thought to myself.
I wasn’t convinced at all that a double mastectomy was the right choice for me. I second-guessed everything. It seemed like an extreme choice I was making. I wondered if it I was overreacting to a small lump. Plus, I couldn’t imagine not having my breasts anymore. I don’t want fake boobs. I don’t to play pretend with my body parts, intimate body parts. Replace and pretend like nothing ever happened. I would never be able to hide from the permanent scars left there to remind me that anything I put in there wasn’t real. It would only be put there to hide the fact that I had/have cancer. I wanted more information about my options and having to wait until four days before the surgery may as well have been eternity.
If I couldn’t talk to the surgeon yet, I’d at least talk to a close friend who’s been there, done that, as a patient and as an oncology nurse. As a two-time survivor who had both lumpectomy and mastectomy, she rehashed her breast cancer journey for me so I could better understand the basis of her choices and what she’d recommend or say “steer clear”. I will forever be indebted.
“You’re not going to look like Quasimodo. No, they’re not the same, but you’ll get used to it. It takes time, ”she said. “It’s that or it’s cancer.”
I love how straightforward she is. It’s what I needed in that moment. I’ve been worrying a lot about my mental health after mastectomy and how I will respond to the permanent scars and possibly no nipples.
When I hung up, I took a deep breath. “I can do this.”
I had a little more confidence in the decision to stick with a bi-lateral (double) mastectomy. I also had a list of questions prepared now to ask the plastic surgeon around implant placement under vs. over muscle, various flap surgery options (steering clear of any back tissue transplants), nipple reconstruction options (steering clear of labia tissue transplants), and if I will get an order for physical therapy (a must).
I was happy to get a call that Wednesday from the KU Oncology Psychology office to get an appointment scheduled. I needed to go to therapy again and had mentioned that to my surgeon. The first available appointment wasn’t until February 6.
“Are you freaking kidding me?!” I thought.
“One week after surgery? Is that even feasible?” I asked. I needed mental health support NOW! I could go on a whole tirade about our country’s lack of priorities when it comes to mental health care and the lack of providers to support the demand. But I’ll spare you the extra 2,000 words.
We set the appointment for virtual and the nurse assured me she would put me on the wait list in case there was an earlier cancellation. I just needed clarity in my head, with my feelings and emotions so that I had the focus to start planning (I know, major control vibes).
I wanted a clear plan – shit, I would’ve settled for a clear decision. The truth was, part of me didn’t want the surgery to be my choice. What if I make the wrong choice? What does the wrong choice even look like? I kind of wished there was just one option so that I didn’t have to torture myself with “what ifs”. To be completely honest, I just want this to be easy. But the fact is, nothing is easy when it comes to cancer be a cancer doesn’t give a fuck.
I missed a message in the MyChart app on Thursday afternoon. “Good news! An appointment opened up on January 16.” – the therapist’s office.
I responded late in the evening, but was so grateful to get another reply from the nurse first thing the next morning, “I figured you would want it, so I took the liberty of putting your name on the schedule. Have a great day!”
Finally, some good news. …followed by more good news.
I had received an email with the genetic blood test results. Negative! I don’t carry the genetic mutation for breast cancer. I was pretty nervous about these results because of my family history, plus I had done one of the at home genetic tests years ago and results came back showing a small percentage of Ashkenazi Jewish ancestry—which carries increased genetic risk. So, I’m negative. Great. But what does that mean for my girls or sister though? I have no idea.
Had the genetic test come back positive, it would have solidified my decision to move forward with the mastectomy. Negative is great, but it kept that doubt about that direction stirring in my brain. My last line of defense, or certainty, would be the MRI on Monday. If that shows any additional cancer, I would definitely lock in mastectomy. If I only have the one lump, I’m stuck in this purgatory of decision-making. In the meantime, surgery was still in on the schedule in twenty days. I needed to prepare so that I wouldn’t be in a position where prep was last minute. I don’t need that extra pressure. Mental preparation would be an ongoing effort. Recovery preparation needed to start now.
I have only a vague comprehension of the impact to my daily life this surgery will have on me. Beyond “it’s gonna suck”, I realize that I don’t quite understand the specific ways in which this temporary disability will, in fact, disable me. I began Googling “mastectomy recovery” and read through resources from The Breast Cancer Club, a local organization I became aware of through an interaction with an individual from one of my posts on LinkedIn. I hadn’t considered the sleep position situation after a mastectomy. One of my coworkers had mentioned an electric recliner her step-mom had borrowed for her mastectomy recovery. Maybe something to look into.
In the meantime, I thought about how badly our mattress needed a replacement. Zach and I have been talking about it for months. I figured, what better time than now? Mattress shopping consisted of playing around the store with the remote-based adjustable bases. What has good head angles and can raise and lower? Will this be a good spot to lay down, yet sit up during the day? I joked that I bought myself a hospital bed, but it kinda is true.
Over the weekend, I continued my research. I came across groups on Facebook and Reddit where survivors, or thrivers— I’m learning is a new reference, posted lists of must-haves for mastectomy recovery. Here are some of the things I bought:
- Wedge pillow
- Mastectomy Recover Pillow
- Lymphedema Underarm Pillows
- Wrap-tie Shirt With Drain Pouches
- Zip-up Hoodie With Drain Pouches
I looked at button up pajama sets with sewn in drain pouches, but the prices on some of those were ridiculous. At least much more than I’m willing to spend. I had been texting with my sisters about the steep prices on some of the mastectomy undergarments, pajamas and specialty pillows I was finding. It’s actually angering. It’s like, in order to be comfortable recovering from this surgery, you had better have disposable funds—if you don’t have disposable income, tough luck. I hate knowing that access to these items is impossible for so many women. I refuse to spend that much. My oldest sister agreed.
“I can sew on pouches for you and do it cheaper,” she offered.
Earlier in the week, I found BRCA Strong. A non-profit organization supporting women with breast or gynecological cancers. I found that they offer pre-mastectomy care packages that included a robe, pajama shirt and bra, all with drain pouches. I filled out the inquiry form for a package hoping I could get a few more items to help me prepare for recovery. Amazing org! Donate if you can.
That’s where I’m at now. Project: Plan for mastectomy and try not to stop being busy long enough to freak out and ball your fucking eyes out.
Midlife Mamacita 