Spring Changes

Our Granddaughter Ammara’s Love Art

Life has been a whirlwind this past month, centered primarily around our upcoming move. Not by choice! Although the new place is just five miles away, the task of packing up hundreds upon hundreds of books, along with the rest of our household, has been quite a challenge. The silver lining? Our new house is filled with light and has a fantastic workspace and is conveniently closer to the beach. Once we're settled in, brace yourselves! The creative juices are flowing, and we're brimming with book ideas.

On the cancer front, today I had a meeting with my brilliant oncologist to review recent results and discuss our next steps. Throughout this journey, scans have consistently failed me, from missing my initial breast cancer years ago to the ongoing struggle to detect my lobular cancer through PET scans, CT scans, and MRIs. However, one test has remained reliable for me: CtDNA. This morning, the latest results revealed a doubling in my cancer's tumor mutational burden since the last test. What does this mean? It's time to switch up my chemotherapy, as the current treatment is no longer effective. Therefore, the plan is to potentially make a change following my seventh stent replacement surgery in June.

Jim and I want to express our deepest gratitude to each and every one of you who has been checking in on us and seeking updates on this journey with cancer. Your unwavering support means the world to us, and we are particularly grateful for those who have been a constant source of strength and companionship…and support us by buying our books and spreading the word about our work. The financial toxicity of cancer is real, and I still have to buy health insurance and pay the premiums in the open market place.

We cherish each of you dearly and cannot emphasize enough how much your love and support mean to us through these challenging times.

Progression and “Psychooncology” - Interaction Between Brain and Body

Jim and I celebrated my first stage 4 cancer diagnosis anniversary on June 27th. Thankfully, my first line of treatment has been working…until now. Or maybe it will continue to work for a bit longer.

My latest scans showed some progression. Metastatic involvement throughout the spine, pelvis, ribs. A lymph node enlargement. But I’m still the little engine that could.

I’m attending my first in-person medical conference this September and will share my story on a panel. My oncologist is excited about starting me on a Phase-One drug trial this fall. My team of doctors say, ‘Hang in there. You’re doing great.’

Since getting diagnosed (again) this past year and delving into patient advocacy, I probably get 30 to 50 medical articles a day through email or from friends who are in the same situation as me. This paragraph from an article published by the National Library of Medicine caught my attention today:

The field of psycho-oncology is hung up on the hyphen in its name. How do we understand the link between mind and body? Is that hyphen merely an arrow to the left, indicating that cancer in the body affects the mind? Can it be an arrow to the right as well, mind affecting the course of cancer? We know that social support affects survival, including that with cancer. Also, people tend to die after rather than before their birthdays and major holidays.  Depression worsens survival outcome with cancer.  Yet we have been understandably delicate about mind-body influence, not wanting to claim too much, or to provide unwitting support for overstated claims that wishing away cancer or picturing white blood cells killing cancer cells would actually do it. That arrow to the right is a connection, not a superhighway. Yet in our desire to be respected members of the oncology community we have often minimized a natural ally in the battle against cancer – the patient’s physiological stress coping mechanisms.

So here I am today. Despite this latest scan… I AM DOING GREAT!

Supportive Language with Cancer Patients

As I approach my one-year anniversary of getting diagnosed with stage IV breast cancer, I think one of the saddest statements people make to me is saying innocently, ‘You'll be fine!' Although these comments are well-intentioned, they DO often invalidate my feelings.

What I have isn't a chronic disease. It will kill me. The goal and the hope is for it someday becoming a chronic disease. But we're not there yet.

Please check out these two short and informative articles.

https://www.survivingbreastcancer.org/post/talk-with-loved-ones?postId=a364283d-fc70-425b-9aac-93595a069ccc&utm_campaign=6c296ec0-9205-4ef8-aff8-09e8689f4eb5&utm_source=so&utm_medium=mail&utm_content=9e027de3-f8ce-40df-b0a9-0c37a19a024e&cid=064092a9-796a-4f8d-834d-ae2ea30dca0e&fbclid=IwAR1rvLhp6RQnFI6tJPfHdHfy1wcz28wAi6YT0x6mZxXYtNx4jC7AeUwIz4I

https://breastcancernow.org/about-us/news-personal-stories/battling-brave-or-victim-why-language-cancer-matters

As always, posting this with love and gratitude for all your prayers and warm support.

May Gray in California...and Good News on our Journey

Well, the annual "May Gray" has enveloped our corner of the world, so (ornery as I am) I find myself impelled to share a positive update with all of you. Through the mists and fog that accompany these days, a ray of hope always manages to shine through, warming our spirits here.

First and foremost, I again want to express my deep gratitude for the outpouring of support and affection you have showered upon me during this challenging time. Your unwavering presence in my life has provided solace and strength, reminding me that I am not alone in this battle. I am eternally thankful for your constant loyalty and love.

Speaking of battles, I am happy to share that I am responding well to the current regimen of chemotherapy I have embarked upon. Though the road ahead will be arduous, your encouragement, prayers, and well wishes continue to fortify my spirit, and for that, I am profoundly grateful.

However, since my last report, an important change has taken place. After seeking a second opinion with a top oncologist in San Diego, I made the decision to change my care team. This may seem like a small shift, but in the realm of battling cancer, it carries immense significance.

The experience of facing this adversary has taught us the value of seeking multiple perspectives when it comes to our well-being. All of us diligently research and compare material possessions such as televisions and cars, but when it comes to matters as precious as our health and confronting the complexities of cancer, we need to remember that the same principle applies. It is through this realization that Jim and I sought a second opinion—an act that has empowered us and bolstered our confidence in the decisions we make regarding my treatment.

In closing, I want to emphasize how truly blessed I am to have such an incredible community of readers, friends, and well-wishers. Your letters, messages, and gestures of kindness have touched my soul in ways that words can never adequately express. Together, we shall face the challenges that lie ahead, weaving a tapestry of resilience, love, and unwavering determination.

Advocate for Yourself and Others

My Invasive Lobular Cancer (ILC) story started in 2003 when my general practitioner noticed a hard tissue in my right breast during my annual exam. I had just gone through a clear mammogram the week before. At the time we were living in Connecticut, and an ultrasound and a biopsy identified the tumor as 0.9 cm lobular breast cancer. I went through a lumpectomy and radiation and five years of tamoxifen, and all the stats I was given ran along the lines that they found the cancer early, and I was cured.

Fast forward to earlier this year. Nineteen years later. Out of nowhere, I developed food sensitivity…

Click Here to Read More at the Lobular Breast Cancer Alliance…

Curly or Straight … That’s the Question

I remember reading an article not too long ago about how seventy percent of the woman are unhappy with their hair.

I was born with curly hair. In line with the above statistics, for most of my life I preferred styling it straight. As a teenager, my friends and I used to get together and iron (real clothes iron) our hair. I gasp even now thinking how miraculous it was that none of us ended up with third-degree burns.

Fast forward a decade or two. Having a plateful of responsibility with children and job, I made myself embrace the curly attitude. Yes, for me at least, it was positive. At the time, I was working as an engineer. I was there for my brain not my style.

Again, moving forward a few years, Jim and I were published authors. At our first meeting with the publicist, she took one look at our publicity photo and said, ‘straighten your hair and have the photos redone. It looks more professional that way.’

Gasp, shock, annoyance. No, we didn’t have those pictures redone, but in the back of my mind the germ of this idea sprouted that I look better, more professional, if I straighten the curls.

Since that day, I would arrive at conferences with curly hair and straighten the curls for events. Hence, the joke started that Jim had two wives. I look very different from one to the next.

As the years passed, added to the mix of curly and straight, was the coloring. Red tone this month. Highlights next month. And every three weeks, the gray would poke through.

And now we’re where I am today, and a new hairstyle has been born. Jim and I had a conversation with the oncologist about the side effects of the chemo I’m on. As far as the hair, she said, you won’t lose it all, but it’ll thin out.

Well, there are a lot of things these days that I don’t have control over. The taste of food, the tiredness, the aches, and pain. But I can have control of my hair. So, this morning a hairdresser came to the house, and I sat in the chair and told her I needed something different. I needed a pick me up. I needed something that says I’m in control.

And she did her magic. What do you think?

Are you happy with your hair?

A friend has been kind enough to set up a GoFundMe fundraiser.

Here is the link to that page.

Thank you!