Today, I’m thinking about simple moments. Earlier, I was sitting out by the pool at our hotel, my first time doing that. I was alone for about 20 minutes and it was delightful. I was enjoying the gentle breeze, sitting in the shade on this lovely sunny morning. I was enjoying just being in the world.
A woman came out to the pool, smiled at me and chose a lounge a bit away to sunbathe. I was sitting at a table with an umbrella. Shortly after, six young women, I would say about 15 years old, tumbled through the door laughing and talking. They immediately dumped their towels and coverups on a lounge and jumped in the pool still laughing and talking. I don’t know if they were siblings, close friends, or a combination of both. I do know that they were very close and very engaged with one another.
I sat there and just appreciated their joy. Then they started playing the most hilarious game. They broke into two groups. One group was mermaids, and the other group was sirens. A girl in the mermaid group started singing. A girl from the siren group told her she was not allowed to sing that song – she was a mermaid, and that was a siren song. Sailors could crash on the rocks if she sang that song near them. The girl replied “my mother sang this song as a lullaby to me as a child. I can sing this song.” And she resumed singing.
Not only did I find their play, their imaginations, and their creativity delightful, I found that statement, that claiming of voice, that claiming of song incredibly powerful.
There are so many lessons in the simple moments, the importance of camaraderie and connection, the importance of communication and joy, the importance of play. The most powerful message I took with me, though, was the message that we need to claim the right to sing our own songs unapologetically and with gusto. I hope you sing your song today.
I sit outside at a table with an umbrella on this cool, lovely, sunny morning. i’m wearing long yoga pants and an Oceanside sweatshirt that my daughter got me. Around my neck is a hummingbird necklace gifted to me by my son as I started this adventure. A breeze gently blows through my hair and caresses my skin. It’s good to be alive.
I’ve always believed that every day was a gift and on this journey, I am more convinced than ever that this is true. It’s also true that some moments are incredibly rough.
With all the accidents and injuries I’ve had in my life I thought I had a pretty good pain tolerance. That said, I was not ready for the pain involved in a breast cancer diagnosis, a double mastectomy, starting reconstruction, and just managing healing. There’s pain on so many levels, physical, emotional, spiritual (so many different types of physical pain). My identity feels squishy and somewhat nebulous, but I recognize that’s due to the moment I’m navigating. I am who I am. That will not change. I am strong. I am optimistic. I am independent. I am a warrior. To paraphrase the immortal words of Commander Taggart in Galaxy Quest, “(I) never give up and (I) never surrender.”
Some things happened this week that were frustrating and disappointing. My plastic surgeon decided that my expanders were still sitting too high in my chest, so he didn’t want to do my last full expansion this week. He only did half. And rather than planning for my reconstruction for two months from now, he wants to wait. Apparently if my expanders relax on their own, it’s a much simpler surgery. If they don’t, he has to deal with readjusting scar tissue, and the outcome, I guess, will be less positive. So I’m digging down and finding my patience to wait, to realize that I am just at the beginning stages of this whole process.
I have the most incredible support system. I am so blessed with family and friends who love me, who reach out to me, who provide expertise and information, who provide shoulders when I’m sad or overwhelmed. On this journey, whenever I have needed something the person who had the ability to provide, it has appeared. Breezy, one of my new daughters (by marriage) gifted me with a wonderful cushion vest that I can wear in the car to protect my chest from the seatbelt. Fortunately, for me now, she works at a bra spa and is helping me navigate the kind of support I need now that I don’t have to just use ace wraps any more. That whole concept has been overwhelming to me and having someone in my corner who is an expert is such a gift.
I’m just sitting here, pondering the idea that we can be underwhelmed and overwhelmed, but we can’t just be whelmed. I think I’d like to be whelmed for a while.
So on this beautiful Friday morning, I sit out by this lovely pool surrounded by palm trees and flowers, and I breathe, content in the knowledge that I am, content in the knowledge that I will be, content in the knowledge that I have all the resources I need to get through this. Thanks for listening!
I just talked with my best friend Mary this morning. It was extremely therapeutic. Like many people, she’s curious about what’s going on with me, so I don’t burden her when I tell her. Unfortunately, that’s still a hurdle I have to get over in my mind before I call her. I wonder why that is. I wonder why my being there for other people is never an inconvenience, but I’m always convinced that my needing someone to be there for me will be. I don’t want to make people feel bad. I don’t want to dampen the joy of their day. I don’t want to be a burden.
This morning I was feeling, overwhelmed, frustrated, and a bit defeated. Apparently being off house arrest and able to walk around more freely doesn’t mean I’m ready for a marathon. It doesn’t mean I’ll have energy or the stamina to do what I want to do. It means I can slowly and gently start the process of regaining capacity.
Talking to my friend allowed me to release my emotions, ground in where I actually am, and find a level set for my day.
I know one issue for me is that all my news in this process has been extraordinarily good. Everything I’m going through could be so much worse. While all of that is true, this is still incredibly difficult, much more painful than I expected, and basically it sucks.
That doesn’t mean that what other people are going through doesn’t suck worse. It means that it shouldn’t be a comparison. I shouldn’t feel bad about feeling bad. What I’m going through is valid and legitimate. In my mind, that’s hard to accept sometimes.
Breakfast in the atriumSitting by the pool#flowersoftheday
A diagnosis of breast cancer is scary! I wrote the message below over a week ago, but thought the points of collaboration, responsive healthcare, openness about my concerns, in short, claiming my voice were important and might help others. So I decided to share it now.
Providence St Jude rock garden
Today has been an interesting day. When we took a shower this morning my waterproofing around my right drain lifted and the padding underneath got wet, necessitating a call to my plastic surgeon. He thought Andrew and I could safely change it. Before we got the chance, my left drain inflated indicating an air leak. With 2 issues I felt we needed the doctor.
He met us at his office on a Saturday afternoon. He removed the packing and waterproofing on my right side, cleaned the area, then moved to the left side.
It took a while, but Andrew figured out that the effort to seal the slice in the tube leading to my drain (it was accidentally clipped as they were changing my dressings 2 days earlier) wasn’t working. The 3 of us then collaborated on a strategy to find and seal any leaks that included replacing the bulb and the stem on that side. This still didn’t do it, so Andrew posited that we needed to close the slice in the tube and tape it closed. I appreciated how collaborative my surgeon was in sorting everything out. In my experience, many physicians aren’t collaborative or creative problem solvers. Dr Lin is a wonderful exception. Once the leak was patched, Dr Lin instructed Andrew on how to manage both issues should they arise again and loaded us up with supplies just in case. Our goal was to keep the left drain working for another 1-2 weeks until it could safely be removed. The only alternative was to do a second surgery and replace the drain, an option we all hoped to avoid.
Then Dr Lin injected 120ccs of saline solution into each expander, bringing my total to 180ccs. The ultimate goal is 550-600ccs. (Since then I’ve reached 460 ccs.) Dr Lin thought this would both get us back on track and help reduce my fluid output. Our bodies create fluid to fill spaces and with more space taken up by the expanders, my body doesn’t have as much space to fill. This will hopefully facilitate drain removal.
I also talked with Dr Lin about his PA whom I really like, but who has also made a couple concerning mistakes, including clipping my drain tube. He set my mind at ease, and affirmed my perceptions. I then asked that he encourage trainees/interns to introduce themselves to patients when they enter rooms as a gesture of acknowledgement and respect. He thanked me for my feedback.
Here’s the interesting thing. I feel more grounded, more peaceful, and more myself today than I have to this point. I also feel more optimistic. It’s an awesome feeling.
I have an amazing medical team, an amazing support team, and I have this cancer situation. I know I will likely float in and out of this feeling of assurance and confidence, but I’m grateful for this feeling today.
A cancer diagnosis is an emotional roller coaster, as is treatment and follow up. But like any healthcare situation, openness, responsive, collaborative healthcare providers, asking questions, and claiming your voice are critically important to the success of treatment. I have more decisions coming up, so will have more to say on this topic. In the meantime, wishing you health and happiness.
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! 💃💃💃
For the last few days, I have focused on living in the moment and gratitude. My wonderful husband helps with that so much.
Several days ago he took me ring shopping because we used a placeholder ring for me when we got married. He found a gorgeous, ruby and diamond ring as well as several other lovely rings. He showed me pictures of them and told me when I was feeling up to it, we could go look at them. When I felt well enough to troll the mall in a wheelchair, he took me to see them and try them on. I fell in love with a ruby and diamond ring, as he knew I would.
That day, I was feeling pretty pessimistic. A gorgeous ring like that seemed to be a portent for the future, and I wasn’t confident in what the future held. I asked him to roll me to a sitting area where we could talk face-to-face and I could tell him my fears. My fears of not living, my fears of debilitation, my fears of treatment, my fears of not being , my fears of losing myself. At that moment, I seemed to have lost my optimistic self. I was embracing a scarcity model and pessimism, two things that do not typically characterize me. Andrew‘s response was “My love, this ring is a symbol of how much I love you, how happy I am that you are my wife, and how happy I am that we are sharing our lives together”. The interesting thing is that as soon as I said the words and heard Andrew‘s reply, the weight of those fears lifted.
Yes! There was no reason for me to be this pessimistic, this fearful. Everything so far had gone my way. Yes I had had a double mastectomy, but they got all the cancer with clean margins, and there was no indication of cancer in my lymph nodes. You can’t really get much better than that following a breast cancer diagnosis. I had decided on breast reconstruction surgery, so that was going to happen as well. I needed to focus on how fortunate I was and try to be as positive as I could.
That does not mean that I’m positive all the time. I’m not. I have cried more in the last month and a half, since the diagnosis, than I’ve cried in my entire life. And as my children will tell you, I’m a crier. When they were little and we saw sad or poignant commercials, TV shows, or movies, they always looked at me to see if I was crying yet. Often I was – or at least I had tears in my eyes.
I think it’s critically important to allow myself to sit in the fear and the sadness that are part of this cancer journey. Normally, I approach those emotions as Chevy Chase did at the Grand Canyon in National Lampoon’s Vacation. I bob my head three times and I’m done. This time, with this journey, it’s not so simple.
That said, gratitude, and focusing on the present really help, at least sometimes.
The other day my sweetie took me to make candles. I love candles and it was a warm, sweet, fun moment and I was fully present.
This morning we went to see the medical oncologist for the first time. I was extremely apprehensive about that visit. I teared up a couple times this morning in anticipation. None of the treatments to prevent cancer from coming back are very much fun and I was afraid. My oncotype analysis is not back yet, so this was really just a preliminary meeting. After meeting with him and with my plastic surgeon, Andrew was pushing me back to the car in the wheelchair when I decided I wanted to grab salads and just sit outside and enjoy the beautiful day. So, that’s what we did. We also did one of our favorite things and played games on Andrew’s phone.
These three examples of being in the present moment have really helped ground me. I know I won’t always be there. I know there is still a lot of fear, uncertainty, and angst ahead of me. I also know how very much I have to be grateful for.
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.
Before my double mastectomy, my doctors told me I wouldn’t feel much except for numbness in my chest. I’m happy to say that they were wrong. I’m also in a great deal of pain because they were wrong. Nerve pain is real, and apparently both the biopsy on my left breast and the mastectomy of my right breast did some nerve damage. Almost from the beginning, this pain had a form, the form of a red, burning fire dragon.
After I fell asleep at 1:30am, I don’t think I moved all night and when I woke up this morning, the entire fire dragon was flaming. Because the pain was excruciating, I felt motivated to try to figure out what my dragon – yes, I already think of it as “my” fire dragon – looks like.
Its head has gold/red lava eyes glancing out from my back languidly, slightly hooded, confident in its power. I don’t yet know if it’s female or male, or what it may wish to be called. These are details for later.
I just know that it’s taken up residence from my right scapula across my back, around my side and over my chest to my sternum from the left. Its body and tail stretch horizontally across my back. It is sleek and aerodynamic. Its wings tucked back along its sides and its legs drawn up against its body as if it has just dived from a high point, and is now smoothly gliding across a horizontal plane.
I do know that nothing seems to touch the red hot searing pain it causes when awakened. I try to let it sleep.
Images of many fire dragons show them breathing fire. Mine IS fire with golden and blue black tendrils of flame throughout its body.
In dragon lore, red fire dragons are proud, fierce, and vengeful. I have direct experience with those qualities. In Chinese culture, a red fire dragon symbolizes good fortune, happiness, and good luck. I hope that all these symbols are equally true.
I grew up reading the Dragonriders of Pern books by Anne McCaffrey. My little girl self yearned to impress on a dragon, making us partners for life. I may want to be more careful what I wish.
I’ve now taken pain meds and a muscle relaxer, and I’m more comfortable and a little more relaxed. Hoping to sleep. Rest fire dragon. Rest.
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 