Plan A-ish

Week 14 A.D.

Friday was Zach’s last day home with me. We celebrated by finally leaving the house together for something that wasn’t a doctor appointment!

Zander had Family Breakfast at school, so we ate our donut, heard the Ukulele Club strum to pop hits, and hit up the book fair. I navigated the halls just fine but it was the elbow to elbow crowd in the library for the book fair that made me nervous. I also realized how difficult child-sized lunch tables are to get in and out of when recovering from a mastectomy.

The one donut didn’t fill me up, so I convinced Zach we needed real breakfast at First Watch to commemorate the end of his time off with me. Sitting in that booth, which was just about as tricky to slide into as the lunchroom table, I felt like a real functioning member of society again.

Some friends had given me a gift certificate to my salon for hair washing (a brilliant idea for anyone recovering from a mastectomy) and I scheduled a wash for later that morning. It had been about three weeks since my last deep hair wash. Zach did a fine job following my hair routine for the time being, but bless his heart, it wasn’t the same. His short finger nails barely reached my scalp and there always seemed to be a little conditioner that didn’t quite get rinsed out, leaving an oily film in the back. The salon wash felt amazing. Add on the blowout and I was really beginning to look like the old me again. A real, functioning me.

Almost.

Saturday morning we had to report to Peace Out Cancer to return the lift chair I had borrowed. I went with Zach and Jillian this time. In preparation for its return, I wrote my journal entry in the book that goes with the chair. That was an emotional experience, especially after reading the previous entries in it. I jotted down info about my cancer, what I knew about my treatment, and shared how important this chair had been to my healing journey. As I wrote my entry, I thought about how crazy it is to think a chair can be such an important tool to recovery. But as I lay in that chair every night for the last three weeks, I could feel the other women/survivors with me. The chair had worn spots, indents, in certain areas of the cushions and the foot rest. Some nights when I couldn’t sleep or I was restless, my body would eventually find these pre-molded spots that would trick my body into thinking it was able to side sleep again or curl up into a ball. As frustrated as I was some nights when I couldn’t sleep from surgery discomfort, it made me feel like I wasn’t alone and that I could get through it, like these survivors had.

I was sad to say goodbye to the chair and also really nervous to sleep in my own bed again. After only a few days of three-a-day stretching, my range of motion was improving and my core was still strong, so getting in and out was becoming less of a concern. I was more nervous about not being elevated enough to not feel the full weight of the implants on my chest. Laying at an angle takes some pressure off my pectoral muscles. This is exactly why I had prepared before surgery—I had purchased a wedge pillow and tried that out the first night.

…it sucked!

The wedge pillow propped me up too high but when I tried a different angle, I kept sliding down it. Then, there was the pillow situation. I used the tiny pillow I had been using in the recliner but it wasn’t enough cushion against the ultra firm wedge. I missed the chair arm rests too. They allowed me to prop up my knees or rest my legs completely over them—that side sleep and fetus position feeling. I tried using my pink mastectomy pillow from the hospital but having only one pillow meant I was thrashing it around from one side of my body to the other all night. It also didn’t help that I was still using the AirPods to drown out Zach’s snoring, but my reach for them on the night stand from the bed was at a tougher angle for my sore arm pits. I needed a new configuration.

On the second night, I found it. The hospital bed! I got rid of the wedge pillow. Zach was a trooper and let me prop up the mattress head and footrest. Coincidentally, I think it also helped reduce his snoring so I could give the Airpods a rest. I was able to use my own pillow in this setting, which was glorious. And, I brought my other mastectomy pillow into bed too, giving me two body pillows on both sides. That was it! I slept again. Almost like normal.

Two of my oldest friends from Iowa came for a quick weekend visit. I haven’t been able to see these ladies in well over a year, if not two. It was good for the soul. I stayed up later than I should have, talking and catching up. It was hard to say goodbye in the morning. In this season of my life, my kids have taken exclusive priority, but time with these ladies reminded me how important it is that I do better staying connected with my own friends. I’ve spent the last decade making sure my kids got to their play dates, practices, events and sports travel, but I’ve severely neglected my own. If this experience has taught me anything, it’s how important it is to not lose yourself.

This first week without Zach had its challenges and its wins. I’m back to a schedule, starting at 7 a.m. to get Zander on the bus. Once he’s off, I’ve been showering on my own. That’s right…all by myself! It might take a while and my back might not be getting a full scrub, but I’m getting the job done. The challenge is the dogs. Our Doberman and Great Dane love me too much to not jump on me. Despite how well I’ve been doing, my body and reflexes aren’t back to normal to deal with that. They’re used to being let out multiple times in the day, so there may have been a kennel poop incident or two this week.

I had my Oncology appointment mid-week, though not the way I expected. Turns out, it’s really important to check appointment locations on MyChart before you leave the house. As we checked into the Westwood location, I began to get nervous as soon as the front desk lady’s brow furrowed.

“You say your appointment is with who again?” she asked.

Of course at the ground-basement level there’s no cellular signal, so I couldn’t look it up in the moment.

“I’m sorry, but his nurse said they’re in Overland Park today. You can head there now and call to see if they can reschedule you for a later time,” she offered.

Shit! This was the appointment I was waiting for. The treatment plan appointment.

By the time we drove out of the parking garage my phone was ringing. Thankfully, they were able to schedule a telehealth call at 4:30 p.m. I dialed in from the car, answered some questions she had, then waited for what seemed like an eternity.

“Hi Nikki, it looks like great news from the surgery,” my Oncologist said, as he joined the call.

He reviewed my Oncotype score (2) with me as well as the pathology report.

No changes to the staging. Stage 1. The invasive ductal carcinoma, grade 1 (slow-growing), is removed. Margins are 0. The additional spots picked up by MRI are ductal carcinoma in situ, or DCIS, grade 3 (aggressive). One of the ducts carrying the DCIS was touching the back wall of my breast tissue and it appears they were able to get that out. Margins 0.1mm. The lymph nodes look healthy. One node detected a cancer cell present, but it had not yet absorbed into the lymph node.

“I did the calculations and it looks like your risk of recurrence in the next five to ten years is 2-5%, assuming you take the hormone blocker for at least five years,” he added.

Ok, better than what I thought, reading the genome results last week. But I guess I missed that one of the margins was not exactly 0. That means at least a spec of cancer was on the outermost edge of the breast tissue removed. I don’t love that. Especially since that was a more aggressive cancer.

“So no chemo?” I asked hopefully.

“No chemo.” he assured. “You got this early.

So here’s the deal. I will, reluctantly, start Tamoxifen on March 1. I’m not gonna lie, I’m really nervous about this. I’ve not heard the best things about the side effects of this drug. It’s essentially fast tracking my body into a chemically-induced menopause. Common side effects include hot flashes and night sweats like they’re on steroids. Joint and bone pain are also common, along with fatigue and significant weight gain. Risks include blood clots and thickening of the uterine lining, which can lead to…cancer.

Fucking great.

I will not do injections, just this pill everyday for 1,825 days (unless traveling overseas or undergoing surgery). I will check in regularly to discuss side effects and hopefully control those with additional medications or discuss dosage options—although lower doses will impact efficacy. I will need to stay active to reduce joint and bone pain and I requested a referral for a nutritionist to help me with anti-inflammatory foods in addition to weight management.

So I guess that’s my treatment plan for breast cancer: double mastectomy (DMX) with reconstruction and Tamoxifen hormone-blocker for five years.

It’s Plan A-ish. Almost what the Oncologist proposed in our first appointment.

I would’ve thought I’d feel relief that things are almost going as planned. We jumped from an expected lumpectomy to a double mastectomy instead, thanks to the MRI findings. And no hormone-blocking injections. Just a pill a day. But, knowing I had aggressive breast cancer in my body at all will probably freak me out forever.

I reminded myself that this is survivorship. A sense of relief with undertones of constant fear. This is why “hope” is the recurring theme for cancer fighters and survivors. I need to focus on just that.

I committed the rest of my week to hope. Taking a page from my therapist’s book. I’m going to try to focus on what can go right.

And also, what can I do to prepare for treatment symptoms?

Exercise. Eating well. Sunshine.

I committed to two-a-day walks until my six-week exercise restriction expires. I will make sure I connect with a Nutritionist and work on an eating and vitamin plan that will work for my body’s needs. Treatment officially starts in less than a week. Time to get to work on phase two of “Plan A-ish”.