Tag Archives: On health and healing

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!!!

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!

A beautiful sunny day, a gentle breeze, and being content in the moment

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!

Maintaining my mental health on this cancer journey: A quick note on the importance of reaching out when I need support

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 atrium
Sitting by the pool
#flowersoftheday

Insights on communication and collaboration in my breast cancer journey: Part 1

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.

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.

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.

Reflections: On my worst (and best) Thanksgiving ever

Let me say first I LOVE Thanksgiving! It is my favorite holiday of the year. I love to make a big dinner for my family. For us there are traditional “must have” foods: monkey bread in the morning, and for dinner, turkey, homemade stuffing, mashed potatoes and gravy, green bean casserole with fried onions on top, 7-up salad, homemade bread, cherry cheesecake and homemade pumpkin pie. Without these foods, it just isn’t Thanksgiving.

At least that was the case until two years ago on Thanksgiving. I had fallen the month before at my favorite academic conference. When I fell, I broke both my wrists. The weeks leading up to Thanksgiving were difficult ones in a variety of ways. I was learning how to be helpless. I was accepting with as much grace as possible that someone else had to do absolutely everything for me. I was dealing with incredible pain.

I was also dealing with the fact that my daughter, who had a job in retail, and who was a student at UNLV, a 19 hour drive away, was not going to be able to come home for Thanksgiving. I was trying to cajole, persuade, manipulate my son into accepting my plan that he and I should fly, or drive, to Las Vegas to be with his sister. I was desperate! Our going to Las Vegas was completely unrealistic on a lot of levels, not least of which was my physical incapacity, the exorbitant price of airfare just days before the holiday, and the fact that there was no way I was up to a 19 hour drive. But I just couldn’t handle the idea that we would not all be together for Thanksgiving.

This was a very emotional time during my healing process. The day before Thanksgiving my daughter messaged me and asked me for the recipe for 7-Up salad. As it turned out she was going to be able to have Thanksgiving dinner with some friends in Las Vegas after all. I did not respond well to this request. In fact, it made me cry. I no longer have the text messages that we sent back-and-forth. Stefan typing for me or me voice texting. But I know they went something like this. Me: “Wait! I thought you had to work all day on Thanksgiving! But I want you to come home and be with us! I miss you! :-(” Alyssa: “Mom, I just get to have dinner. I don’t have the whole day off. If I could come home I would. I can’t. You know that. So will you give me the recipe or not?” I gave her the recipe. “Stefan”, I began after Alyssa hung up the phone. “Mommy, we’re not going to Las Vegas”, he replied gently. I burst into tears. It’s hard to cry with both your wrists in splints when someone else has to wipe your tears and hold the Kleenex to help you blow your nose. I felt hopeless.

As it turned out, this was my best Thanksgivings ever!

I was moping around the house on Thanksgiving Eve when Stefan told me he had to run an errand. “Ok”, I replied without much enthusiasm. I don’t think I even offered to ride along. “It will take me a while. I have several stops to make”, he hollered from downstairs. “No problem”, I replied. “Be safe. I love you.” I curled up on my bed in the dark and waited for him to come back. I think I dozed off.

When Stefan got back he hollered up the stairs, “Hey Mom, I’m back. Can you come here a minute. I have something to show you.”. “Ok, I’m on my way”, I replied. As I turned the corner of the staircase I saw my beautiful daughter sitting on the couch. She jumped up, “Surprise”, she hooted. I burst into tears. She ran across the room and wrapped her arms around me. “I didn’t mean to make you cry; this was supposed to be a good surprise”, she said. “It’s a wonderful surprise”, I sniffled. “These are happy tears”. I rested my head on her shoulder as she wrapped her arms around me. Stefan wrapped his arms around both of us and we just stood there, happy to be together.

Alyssa had gotten the whole weekend off, purchased her plane ticket, and collaborated with her brother to surprise me. It was the best surprise I could have imagined.

That weekend, Alyssa took over my care, helping me shower, dress, brush my teeth and hair, manage the bathroom. She fed me with ease. I felt her love, care and compassion. I observed her learning, at her own rate, how to care for me, as I learned how to relax into her rhythm. I was still emotional at times, but incapacitation, pain medication, happiness, and holidays will do that to me.

We ended up having an amazing weekend. It quickly became clear that I had made no plans for Thanksgiving dinner and that I couldn’t cook anything. Alyssa said that was no problem as she and Stefan had decided we were just going to spend the weekend making our favorite foods and hanging out. She said, “You can tell us what to do, Mom, and we’ll do it!” We focused on comfort foods. I stood in the kitchen, or in the dining room looking over the counter, giving instructions. We made macaroni and cheese, 7-up salad, and monkey bread. Everything was delicious.

We snuggled in bed together and watched movies and all the episodes we could find of “Once Upon a Time”, Alyssa’s favorite show. I slept a lot. I would awaken to the sound of Alyssa and Stefan’s laughter or quiet talking. I would either smile and drift back to sleep, or wake to spend time with them. I was still on pretty heavy pain medication most of the time. But I was surrounded by the two people I love most in the world, my children. I thank my daughter for doing all she did to be with me, and her co-conspirator, my son, for giving me the best Thanksgiving ever.