As many of you have noticed, I’ve been much quieter the last couple months than I was before, in the early days following my breast cancer diagnosis.
I want to remain transparent and I’m doing so. I’m writing, but I’ve discovered a need to pull in, to conserve my strength, to focus on me more than I ever have in my life. That means I’m not reaching out as much as usual. That doesn’t mean I don’t love it when you reach out. It doesn’t mean I don’t care. It doesn’t mean that I don’t love you. It doesn’t mean that your friendship is not absolutely precious to me. It just means that right now my energy is spent on healing and focusing inward rather than externally.
This is a strange situation, breast cancer and recovery, nothing I ever would have expected. I’m still having a level of trouble, even accepting the fact that I had breast cancer. I say had breast cancer because my doctor tells me she got it all with great margins. I say had breast cancer because my oncotype scores are really good and indicate very low likelihood of cancer coming back. Even though I had cancer, I’ll be spending the next five years taking aromatase inhibitors and other meds, which suppress hormone creation and manage side effects. The kind of cancer I had feeds on hormones. We want to make sure it doesn’t come back.
My outcomes are better than I ever could have asked for or anticipated, not counting the double mastectomy part. This is still a slog. It’s a lot! Some days I’m afraid. Some days I’m tired. Some days I’m energetic and positive and hopeful. Some days I feel like an alien in my body. Some days I feel perfectly myself.
The key to this adventure is learning to stay kind to myself no matter what kind of day I’m having.
Thank you for caring! Thank you for reaching out. Thank you for being patient when I don’t reply quickly. The love and support of my friends and family mean more than I can say. I’ll be back out. But for now, I still need some time to focus inward. But you are in my heart and my thoughts. And I am grateful for you.
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! 💃💃💃
This photo probably looks like three friends having a good time on Fremont Street in Las Vegas. It is! But it is also so much more! Two months ago, I would not have been able to be here, let alone walk around and enjoy myself. The bright, colorful, moving light shows, the hustle and bustle of the crowds of people moving in all directions punctuated by laughter and silliness would have been too much for me. It would have taken me down. Within minutes, I would have had a blazing headache, been dizzy and nauseous, and had poor balance. I would’ve had to hold on to Andrew and Glyn‘s arms for stability. This time I did it with no such stress and very little physical support.
Those symptoms, dizziness, nausea, lack of balance, and headaches, are my body’s way of telling me that I’m out of my comfort zone and I need to rein it back. (Other people have different reactions.) The thing is I don’t need to rein it back. I need to push through until it’s too much and then stop. That’s how I’m progressing on my healing journey.
For those of you, who haven’t followed along, a year ago in a freak moment, part of my left retina detached. The night after I had surgery, I stumbled twice in the bathroom and trashed my knee, spraining my ACL, MCL, PCL, and shredding my meniscus. That required an additional surgery that could not happen until my eye had healed adequately, eight weeks after my retina reattachment surgery. Then I had a second eye surgery to remove scar tissue that had built up on my retina.
I’m not completely back to normal yet, but I’m on the road and I see so much progress. There’s still distortion in my left eye, although with red light therapy (to remove inflammation in my eye and knee) and vestibular therapy to help my visual, physical, and auditory systems work together to control my balance and coordination, I see so much improvement. I am getting better! I still have a ways to go, but I’m on the road. As my eye doctor said, I’m not going to know how my vision will level out until at least a year from surgery, which was last March. That aside, I’m becoming more functional and self-sufficient all the time. My independence is something that I have always prized and have at various times in my life, lost. I continue to move forward in my recovery journey, still learning patience and the ability to rely on others when I need them.
Andrew has been an absolute rockstar through all of this. To be honest, I have not been easy. At times, my self-concept and self-esteem have suffered. I have felt bad about myself. My internal narrative can get pretty dark and negative sometimes. Through it all Andrew has reaffirmed and reinforced that caring for me is where he chooses to be, and that he would not choose to be anywhere else. He also consistently reminds me of how far I’ve come, a journey that it’s difficult for me to see step-by-step. He has literally been my lifesaver. I cannot express my gratitude enough.
And now, my friend Glyn. He showed me nurturing, care, and understanding over a decade ago when I broke both of my wrists. You learn a lot about people by how comfortable they are being with you when you’re damaged. Glyn was always comfortable and easy to be around where other friends were sometimes awkward, or simply avoided me.
This situation was different. I had had a couple friends visit a day or two as I recovered, but with no expectations that I would be able to do anything. Paaige and Miche were wonderful. They had no expectations that I would do anything or go anywhere and were just comfortable to be with me and follow my lead. Glyn was making his first trip to Las Vegas and to be honest, I was a little fearful. With my friends, I am normally vibrant, engaged, high energy, and high activity. I have not been able to be those things since these accidents. I didn’t want to become frustrated that I couldn’t be the me that I wanted to be. I didn’t want my friend to have a disappointing experience in Las Vegas. I wanted to make sure that I set appropriate boundaries and called events and activities when I needed to. Glyn was awesome! As we explored Resorts World, where my daughter works, and Fontainebleau, where the new Cocoa Dolce is located, Glyn recommended that we stop for a cup of tea – ostensibly because he was thirsty – likely he also recognized that I was getting tired. It was wonderful to have someone ask for something they wanted that benefited me rather than having someone show pity or concern for my capacity. Well done, my friend!
We had a big exploration day that day. We walked over 12,000 steps, found the Ghost Donkey Bar where I tried my first sips of mezcal. We explored the Bellagio, rode the bus up and down the strip, and I felt gloriously free and capable. When we needed breaks, we stopped. When I needed support, I held Glyn’s arm. It was such a strong powerful day for me.
The next two days I was much more low energy and I needed to rein it back in a bit. We still had fun visiting some of my favorite places and enjoying lunch and dinner. Andrew picked up the slack one night and took Glyn to explore some sites while I rested. Then we had another wonderful “get out there and do things” day, giving Glyn his first experience with Korean barbecue at Master Kim’s, spending time on Fremont Street, and going to the ice bar 5° Below Zero in Mandalay Bay, where we wore fur coats and hats and sipped colorful, sugary sweet cocktails from glasses made of ice. The last day of his visit Glyn and I went to lunch at a new Japanese restaurant in Town Square, Mall.
This trip was about both of us doing things we had never done before. It was about me being kind to myself (although I did have a couple moments, when my gremlin voice – what I call my critical self talk – tried to take me down), asking for what I needed, enjoying myself to the fullest, recognizing that it’s OK to be low energy sometimes and almost normal others. Realizing the freedom to be with a friend that I could trust to understand, and not to push. The steps toward normalcy are important and powerful, as is the recognition that I still have some limitations, and that these may continue indefinitely. Having loved ones and friends for support and nurturing during these times are more precious than gold.
I saw this meme several days ago and it really resonated with me.
Sometimes I wake in the morning feeling out of sorts. Sometimes it builds throughout the day. On these days, the smallest irritants can stack until I’m over the day. I don’t want to engage with anyone or anything.
I’ve come to realize that this means that I’m out of balance. My energy is off. Generally, I’m worrying about things that I have no control over, global politics, national politics, local politics, bad decisions by,… well… you get it… politicians. Racism, sexism, classism, ableism, all the “isms” that undermine and other usually marginalized people. Global warming, war, Covid or the next pandemic, the economy. Mean-spiritedness, dishonesty, disrespect, polarization… the worst human characteristics.
Can you relate?
I worry about things I can’t influence, and I don’t spend my time and energy on things that I can. I recognize, as Stephen Covey did when he wrote about this phenomenon, that on my irritable days I am spending more time concerned about things I can’t impact,(Circle of Concern) than working on things I can (Circle of Influence).
So, what to do… If I can’t change the world at large, I can focus on the world I engage with day-to-day. But I can’t do that, until I change my personal standpoint, until I balance myself. I’ve found two types of strategies to be effective. I can change what I think (or what I think about) or I can change how I feel.
Whether through meditation, affirmations, journaling (including writing blog posts), and yoga stretches, especially sun salutations I can change what I think and what I think about. To change how I feel, I might have a private dance party (Safri Duo’s Bongo dance is a great place to start.). I might sing at the top of my lungs (Lizzo’s About Damn Time is my current go-to.), go for a lovely walk, or take a hot bubble bath.
Taking time to balance myself makes me better able to approach the day, week, month. If I’m balanced, it’s easier for me to focus on those things I can influence and release those I am concerned about but can’t impact. Then I can get back to the things that need to be done and engage with the world in a more positive way.
Deborah's Deliberations 