Today was a rough day. No particular reason necessarily. Sometimes this cancer journey just gets me down.
My chest is hyper throbby and achy due to injections into the expanders. I guess I was also hoping for and dreading in equal measure learning about my next steps on this cancer journey. Without the oncotype analyses back, we can’t yet make a plan. And, to top it off, I was over our hotel room. Don’t get me wrong. It’s a nice room. But I’ve been in it pretty consistently since I got out of the hospital on May 11. So, to sum it up pain, liminal space, and boredom did a bit of a number on me this morning. I was sad. I was overwhelmed. I was so bored. I didn’t cry, but I could have at any moment.
So, I got up, washed my face, brushed my teeth, and put on makeup. Those rituals always make me feel better. My sweetie took this as an invitation to get me out of hotel jail for a bit after he got off work.
A few days ago he found a nice Mediterranean restaurant D’Vine in the strip mall across the street, so he rolled me over there. (I’m still not allowed to walk much. So excursions either require the car and drop off at the door, or a wheelchair.) We sat outside on the patio on this glorious sunny day, a gentle breeze blowing, and enjoyed falafel, fatayar, fried cauliflower, lamb kabobs, and lentil soup. Everything was so fresh and flavorful and I topped it off with some rice pudding.
Then Andrew rolled me out into the sun to sit for a bit. It was fabulous to feel the sun on my face and the breeze on my skin. Now back home to the hotel for a nap.
It’s amazing how energy shifts, in this case a change of scenery and some yummy food can change my experience of a day. I’m becoming clear that navigating this cancer journey is going to require me to be mindful of when I become overwhelmed and embracing energy shifts (doing something different, going somewhere different) as important coping mechanisms.
Today’s post is one of gratitude. I finally got my second set of drains out, and I feel so much freer. I’m still on house arrest for another week, which means walking back-and-forth to the bathroom and to the second room in our little suite, but that’s it. If Andrew takes me to a restaurant, he has to drop me off at the door and pick me up at the door. If we decide to go for a walk or to the mall next door, I have to sit in the wheelchair. I still can’t lift anything over 5 pounds, but I can shower whenever I want!!! 💃💃💃
The last 3+ weeks since my double mastectomy have certainly been an adventure, and I have learned some things.
1. Trust: Having a medical team you trust is pure gold. My breast cancer surgeon is both renowned in her field and an ex-student. She was the top graduate in her class as an undergrad, and I was her mentor. She responded quickly when my mammogram showed areas of concern. She facilitated mammograms, ultrasounds, biopsies, and an MRI. She encouraged me to get genetic testing. Most importantly, she put together an amazing team for me and has supported my every step. She made the stages of grief so much easier as I undertook this cancer journey. I could just relax into my trust. I have felt all the things – denial, anger, bargaining, depression, and acceptance (still working on this one), but mostly I’ve felt cared for and supported.
2. Pain management: Pain is no joke and managing it can be a complex process requiring clarity, advocacy, and assertiveness. (I’ll write more about this in a later post.) Just know that it’s hard to do for yourself when you’re the one feeling the pain. Sometimes it takes so much energy. Have a good advocate and coach your advocate on what you need.
3. Cry: Crying is cathartic and it feels good sometimes and frustrating others. That’s ok. I’ve learned that I cry out of pain, out of frustration, and out of joy. That’s all important!
4. Take a longer view: A good friend reminded me not to get mired down in the day-to-day – especially if the day is disappointing – but to take a longer view of progress. Over the last weeks: My arms have gotten more flexible; I can do more for myself including washing my face, brushing my teeth and hair, and putting on makeup. I can now go out to eat. I can toss snacks to Kloi (our cat). I have a bit more stamina. So many little things that add up to real progress. And now my drains are out!!!
5. Be vulnerable: Vulnerability leads to care and grace. My counselor told me that if I ask others for what I need rather than pretending I have it all together I allow them to provide service and to grow as they help me. That might have been my hardest lesson yet. I’m always open to helping others, but when I need help I always fear I’ll be a burden. Weird contradiction, I know.
6. Get counseling: Cancer sucks! And seeing someone who’s paid to listen and offer insights is invaluable. I’m seeing a counselor and I highly recommend it. As part of the breast cancer program here at Providence, St. Jude in Fullerton, Ca, I get a certain number of visits. While talking to friends and family is important, venting to someone who I’m not afraid to hurt with my sadness or despair, or frustration is very helpful. I also share my joys and small successes. And he offers me unique perspectives.
7. Grace, patience, and self kindness: Giving myself, grace, and approaching this situation with patience is probably the best thing I do for my mental health. I’m not perfect at it, but I don’t get down on myself; I don’t judge myself; I try to stay calm and accept whatever the moment is presenting me. And I cry. A lot! But I already said that.
8. Love your people; love your pet(s): Opening myself up to my people (and Kloi), allowing them to share my journey, accepting their care and companionship makes me feel less alone. Plus they each have a unique view or approach that I find uplifting.
My rocks: Andrew, Alyssa, and StefanKloi
9. Be careful not to isolate yourself: I know that since my surgery, I’ve isolated myself a bit. I’m kind with myself about this because I recognize it’s not my typical way of being in the world. That said, this is not a typical situation. Another friend told me to trust myself and what I need, that this time is about me and accepting what I’m feeling without judgment. I get to be in charge and focus on my needs. There’s no right way to do this, but it’s important to put myself first – not necessarily a comfortable position for me.
10. Follow whatever spiritual practice works for you: It helps to recognize that I am part of something bigger than myself, that God, source, the universe, my higher self have me. I will get through this – whatever that looks like. For me, seeking out the beauty around me is the clearest indication that I am not alone.
I’m sure there will be many more lessons as I proceed on this cancer journey, but today, I’m just grateful my drains are finally out. And now, I’m going to take a shower! 💃💃💃
I was rolled in for surgery a little before 1:30 in the afternoon on May 8. I handled everything well that morning, having radioactive dye injected into my breast, meeting with Dr Vito, my cancer surgeon, and Dr Lin, my plastic surgeon, having an IV port put in my hand, talking through anesthesia and discussing how I often respond to it with Dr Paik, having my vitals checked, having the contour of my breasts traced with magic marker, keeping a stiff upper lip.
I was focusing on the moment, staying calm, and keeping it together.
Once I was rolled into the operating room, that changed. I was overcome with fear. I felt total terror. I had no control over what was going to happen to my body next. I had no control over what the pathology results were going to be. I wanted to run. Of course there was nowhere to run. I couldn’t run away from the parts of my body that were not functioning in a healthy manner. But I desperately wanted to run.
The OR team was attentive and kind. They saw the shift in my facial expressions. They saw my eyes fill with tears. They looked me in the eyes, stroked my hand, talked to me, and helped me relax a bit. They gave me oxygen and started the anesthesia. I relaxed as the medication took hold and closed my eyes to the sounds of 80s music playing in the operating room.
Today we must part. I have loved you, appreciated you, marveled at you, been irritated and frustrated by you. Our relationship has definitely been a complex one. But now that you have decided you want to try to kill me, we have to part ways.
I wish you well in “boob Valhalla”. We must continue our journeys apart. I will continue my long happy life without you. I have conflicting feelings about this. I keep joking with Andrew that we can run away to Mexico rather than have the surgery to remove you today, but that would not really be productive. I can’t run away from you.
As I was growing up, you were very small and I was very self-conscious about that, especially as everyone else around me had larger breasts. A friend in college noted my discomfort when someone made a joke about me being flat chested. He pulled me close and whispered in my ear, “more than a mouthful is a waste.” I found that comment both titillating and empowering (pun intended). After that I held you, my tiny perky breasts with pride.
You fed my son. Nursing him was the most amazing experience. To be able to give a baby who had come from my body sustenance – from my body was so special and precious. I loved the end of the day when I rocked him in the rocking chair and nursed him before he went to sleep. I didn’t like it so much when he started biting you. That was when I knew it was time to stop nursing him. Similarly, I know it is now time to release you.
You were tiny and perky until after Alyssa was born and I loved nursing her too. The intimacy and connection that I felt with her was incredible and in the rocking chair at night, feeding her one last time before she slept, I found bliss. It was a precious part of my day. Yssy loved nursing. I think she would’ve nursed for a lot longer, but I had to go on a trip. Stopping nursing her was difficult. It made me sad.
Removing you today is difficult. It makes me sad.
An unexpected positive side effect was that I kept my nursing breasts and suddenly I had a respectable chest. I have loved my breasts in terms of size and shape for 30 years because that’s how long I’ve had you.
You have been part of my self image, and a precious part of my sensual and sexual life.
Today, though. It’s time for me to release you, to set you free. We no longer have anything to offer one another. I am simply not willing to give a blood supply to the cancer you’ve decided you want to grow, although I have loved you, you are no longer part of my life.
Thank you for all you have done in my life. I wish you speedy travels.
Deborah's Deliberations 