Tag Archives: Reflections

Lemonade, silver linings, and the long road home

The last two weeks have marked some watershed moments for me. Some involved making lemonade out of lemons, some required spotting the silver lining in an exhausting week, and one of them – quite literally – meant finding my way home. 

What should’ve been a straightforward procedure to treat Andrew’s common prostate issue turned into a seven day hospital stay. Because his discharge kept getting pushed back, a day at a time, I stayed with him the entire week. Thankfully I’m retired and self-employed, so that part was easy. 

Andrew is intelligent, personable, funny, easy-going. He can talk to anyone and his humor lights up the room. What he isn’t is an especially good advocate for himself. To be fair, most people aren’t. So for seven days, I was hypervigilant, making sure nothing fell through the cracks. I built relationships with nurses who helped us navigate doctors who were not necessarily responsive. I stayed on top of his pain management schedule and monitored all his stats. I asked for what he needed assertively, respectfully, and relentlessly. 

But my biggest challenge wasn’t supporting Andrew. My biggest challenge was driving us the 40 minutes home after he was released.

A little context: 

Over the last couple years, following multiple medical procedures, I’ve developed some common, but unfamiliar anxiety issues. White coat syndrome –  strong flight and, more recently, fight responses when I’m preparing for or attending a doctor’s appointment, and most unexpectedly, anxiety about driving.

After my retina partially detached in November 2022 requiring two repair surgeries, I wasn’t comfortable driving. I tried to start driving again several times, but the glare of the sun and shifting lights and shadows, my distorted vision, and aggressive, unpredictable Las Vegas drivers were too much. Then, came my breast cancer diagnosis and treatment – more surgeries and recovery. First, I couldn’t drive and by the time I could, I just didn’t feel like it. I’d found other ways to get where I wanted to go. I continued to put it off. I’d drive when I was ready, or when I had to – I didn’t really expect to have to. 

Driving us home from the hospital was my first real “have to” moment. To my surprise, I had no anxiety. No distress. No fear. I took the highway part of the way and busy city streets the rest. When we pulled into our garage, I exhaled and let pride wash over me. I’d done it!

That night I realized that this was one of those moments when life hands me lemons and, without even thinking about it, I make lemonade. It wasn’t a moment I sought out or prepared for — it just arrived, unexpected, and I showed up. I came through. I did what needed to be done. I decided I didn’t have to drive again anytime soon, but I knew I could if I needed to. 

The universe had other plans. 

Over the next several days, I needed to drive, a lot. The day after Andrew‘s release from the hospital, I had to drive him back to the emergency room 40 minutes from our home. This time, I drove highways all the way through sometimes easy, sometimes heavy, almost stop-and-go traffic. Again, I was comfortable, calm, and secure the whole way. The next night, a late night ER run had me driving through dark city streets and road construction. I stayed calm. The following day I drove myself to my annual physical exam appointment. Then today I drove Andrew to and from another doctor’s appointment. 

I guess I’m driving again.

More context: 

For most of my adult life, driving has meant freedom. I love to explore. I love to be spontaneous and just get in the car and go somewhere. I also love to plan trips and visit new and exciting destinations. I love the freedom to go anywhere I want to go at any time. I didn’t realize losing that freedom was one of the quiet losses of the last few years. 

Apparently the universe has decided I don’t need that fear any more. I’ve been surprised by my confidence and lack of anxiety while driving. I feel like this is a strong step toward regaining independence lost due to physical issue, after physical issue, after physical issue over the last three years. To be honest, i still feel some reluctance to drive, but every day it’s getting easier.

So where am I now?

I guess we’ll know when I cut loose on my first solo road trip. Until then, I’m happy with interstates, city streets, and trips to accomplish tasks and run errands. 

In a very powerful way, I’m reclaiming myself, my independence, my freedom – one glass of lemonade, one silver lining, and one mile at a time. 

My love!!! 🩷🩷🩷
Roadtrip ready!!!

Cutting Free: Hair as a symbol of play, power, and transformation. 

I’ve always viewed my hair as a toy. It’s been pixie short to waist length and everything in between. It’s been blonde, pink, an almost black brown, and now silver. I’ve had combinations of green, blue, turquoise, purple, and pink highlights. For me, hair has always been a symbol of play, creativity, and celebration. 

Now, it’s something more. It’s a symbol of motivation, of transformation. Today, I whacked it all off—a declaration of freedom, independence, and a commitment to move forward in power and positivity.

Let me explain. The past three years brought physical  challenge after physical challenge that led me to live reactively, often in fear, rather than proactively, and positively as I typically do. Surgeries for a partially detached retina and an injured knee, pneumonia, vertigo, and breast cancer each forced me to slow down, to recover, and to face fear in ways I never had before. They left marks not only on my body, but on my spirit. I’ve been sad, fearful, and negative more often than for any extended period in my life. I’ve felt stuck! Worst of all, I’ve been mean to myself in the things I’ve thought and the judgments I’ve made about myself. I would never allow anyone to say the things I’ve said to myself.

Without making a conscious decision, I stepped off the reactivity path onto a path of choice and action a couple months ago when I started working out in the pool every day. So today, I did a thing. A powerful, meaningful, positive thing. I got my long gorgeous hair whacked off into a short, sassy style that I completely love. I collected my hair so that I can donate it to Wigs for Kids. 

My hair has always mirrored my spirit. But when life pushed me into survival mode, my spirit dimmed. Today, cutting my hair wasn’t just a style choice—it was a line in the sand, a symbolic, liberating choice. Bonus: It’s also easier to take care of this way. 

I know life will keep bringing me challenges. But today, I choose to meet them not with scarcity and fear, but with short, sassy hair—and a commitment to abundance and joy.

On asking the right questions and the importance of a healthcare advocate 

Wow! Yesterday was a day! I’ve always thought of myself as a healthcare advocate—someone who asks the tough questions, navigates complex systems, and helps others feel empowered to make their own health decisions. Yesterday, I realized just how different it can be when you’re advocating for yourself.

What I learned is that having a healthcare advocate isn’t just important—it’s critical! You need someone in your corner who can look at a situation from multiple perspectives, who checks, double-checks, and follows up on every question, making sure everything is clear. I hope in sharing this experience I will help others avoid this pitfall.

Here’s what happened: In June, my medical oncologist in California put me on two medications—Anastrozole to suppress estrogen and progesterone and reduce the chances of the breast cancer coming back, and Venlafaxine, to help manage the hot flashes and other menopause-like symptoms caused by the hormone suppression. Venlafaxine is typically used as an antidepressant, but for me, it was all about managing side effects.

Normally, I’m incredibly thorough when it comes to my healthcare. I research every option, weigh the side effects, and think carefully about alternatives. But this breast cancer journey has been different. I’ve been trying to keep up with it all while leaning on my amazing husband Andrew, my fantastic medical and surgical teams, and the open, collaborative conversations we’ve had. Even so, I learned yesterday that I don’t always ask the right questions—and it’s made these last two weeks feel way longer than they should have.

I didn’t love the side effects of these medications, so I talked to my Las Vegas medical oncologist about going off them for about a month. With our honeymoon/Christmas/New Year cruise coming up, I wanted to feel like myself again, free from side effects. She agreed, saying I should know what “normal” feels like and we’d reassess after the cruise. At least, that’s what Andrew and I thought she said.

Turns out, we weren’t quite on the same page. She saw Anastrozole as my cancer treatment and Venlafaxine as an antidepressant. I saw them both as part of my cancer treatment—Anastrozole to treat, Venlafaxine to manage side effects. So when she said to stop “the meds,” I assumed she meant both. She didn’t. 

Two weeks ago, I went cold turkey off both medications, thinking it was the logical thing to do. If I didn’t need the Anastrozole, I wouldn’t need Venlafaxine, right? Wrong. What I didn’t realize was that stopping Venlafaxine suddenly would lead to intense withdrawal symptoms—way worse than the side effects I’d been trying to avoid. The past couple of weeks have been awful. I couldn’t sleep (or if I did, I had vivid nightmares), I was constantly bouncing between feeling too hot and too cold, had headaches, nausea, dizziness—you name it.

I’ve supported friends and family through antidepressant withdrawal, so I know how important it is to taper off these medications. But I wasn’t thinking of Venlafaxine as an antidepressant; I thought of it as a tool to handle side effects from my cancer treatment. It didn’t even cross my mind to ask about withdrawal effects, and my doctor didn’t bring it up either. She just told me I’d feel better and to enjoy the cruise.

Fortunately, I had an appointment with her yesterday and I realized my mistake.  As soon as I got home, I started taking Venlafaxine again because I don’t have time to taper off safely before the cruise. I’m already feeling so much better and should be back to normal in a couple of days.

This has been a tough lesson, but I’m taking it forward with two new questions to ask: “How long do I need to take this?” and “What happens when I stop?” I’m hoping these questions will save me and others from this kind of experience in the future. For now, I’m focusing on feeling good and making sure our cruise is everything Andrew and I want it to be—magical!

Reflections on the slog that is cancer recovery on a beautiful autumn day

When I started my breast cancer journey, I promised to be open and transparent about all of my experiences. The last few months I have been uncharacteristically quiet. The reason is that this is a truly difficult experience.

But let me set the context first, I literally could not have had better outcomes. After my double mastectomy, test results indicated that they got all the cancers with clean margins and no lymph node involvement. My oncotype score, which indicates the likelihood of cancer recurrence, is very low. I didn’t need chemo or radiation and I only have to take aromatase inhibitors for five years. If I don’t take them, there’s a 5% chance that the cancer may come back in the next nine years. If I take them for the full five years, there’s a 3% chance. I could not ask for better odds. 

That said, this is a slog. I am very aware that other people’s experiences and outcomes are  harder and more difficult than my own. I feel for them, and I wish them success in their journeys. 

I’ve come to realize that no matter whether you are on the worst end of the spectrum or the best end of the spectrum, this journey should not be about comparison and it’s difficult regardless. The fight for life from cancer is always a big deal. It’s clearly a big deal at the worst of times. In my case, it’s also a big deal at the best of times. After my first surgery, I had a lot of pain and recovery was difficult and complicated. I was in the hospital for three days for what was supposed to be an overnight visit because they could not get my pain under control. This was largely a matter of nursing staff not being concerned about being timely in the administration of pain meds. Unfortunately, when you break the cycle of pain medication, you have to start over.  My worst pain was searing pain across my back from my right side around to the center of my chest on the left. I wrote about this pain in an earlier post. I defined this pain as a red fire dragon. It stayed with me for months. In addition to that, my whole body ached. Everything hurt. 

Over the next 6 weeks, I slept a lot both to manage pain and to deal with the reality of what I had gone through, what felt like a betrayal by parts of my body I had valued. I also wrote about this in an earlier post about saying goodbye to my breasts.

I couldn’t lift my arms for weeks. I also wasn’t allowed to shower for a month. That meant that my husband had to wash me, dress me, brush my hair, brush my teeth, anything that needed to be done with my body, I needed his assistance. The only way I could leave the hotel was in a wheelchair and the only walking I was permitted to do was from my bed to the door of the room and to the bathroom. And I wasn’t allowed to do laps. 😊 My doctor figured me out pretty quickly. He knew that I would push to recover as quickly as I could. As it turned out, there was no quickly. I couldn’t push. I had to give my body the time it needed to recover and heal.

I’m lucky. My husband is so loving, compassionate, and caring, he could not have made me make feel more comfortable and loved throughout this adventure. 

Following my reconstruction surgery, the pain has been less, but the side effects from the aromatase inhibitors, the meds I have to take for five years, are intense.

I’m tired all the time. I have a pretty constant headache. My body is fatigued. I’m nauseous a lot. I have joint and muscle pain. And while I am in less pain, it’s somewhat more frustrating because I feel that I should be able to do more. My biggest lesson on this journey has been patience. I need to give myself grace as I go through this process. 

No. I’m not my usual self. I’m more focused inward than usual, but that’s necessary. I reach out when I can, but that’s much less than usual and that’s one of the most difficult things for me to accept. I know that I will be myself again. It hasn’t even been six weeks since my second surgery and I’m still healing and on modified house arrest. I am allowed to go out and walk a bit, but I’m still wrapped and wearing binders, until next Tuesday.

I’m an optimist. Yesterday my husband took me to my favorite Rose Park. I walked a bit, but mostly, I just sat and breathed in the sunshine and the beautiful Vegas, autumn weather with my favorite seasonal Starbucks beverage. As usual, I came home and took a nap. I will get through this. 

To anyone else who is on this journey, the most important thing I have learned is that there is no roadmap for cancer recovery. I have looked for one almost nonstop. I find myself wondering if what I’m going through is “normal”. There is no normal. Listen to your body. Stay patient. Give yourself grace. Notice the beauty around you. Breathe. 

Playing with the portrait function on my new phone

On mermaids, sirens, song, and voice

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.

Energy shifts as coping mechanisms on this cancer journey: A nice lunch and a moment in the sun

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.

On the Importance of Gratitude and Living in the Present on this Cancer Journey

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.

My breast cancer journey: Operating day – double mastectomy – May 8, 2024

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.

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Making peace with pain and a fire dragon

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.

An Ode to My Breasts on the Day We Part

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.