SHELF LIFE

For years, I volunteered at a food bank in Connecticut. My task was to sort through boxes of food donations and check expiration dates.

Not everything around us has a date stamped on it. The concept of expiration or perishing is an intrinsic part of life though. From the beautiful roses in the garden to the milk on the shelf in the fridge—and even medications and treatments—everything has a shelf life.

And that brings me to my latest news. My first line of treatment had an average progression-free effectiveness of twenty-four months. I was fortunate enough to get twenty-five months out of it. However, my latest scan confirmed what my liquid biopsy a month earlier had indicated: my cancer is on the move again, and the drug I was on is no longer effective.

Did this news come as a blow? Not really. This is what cancer advocacy and being active members of my treatment team have done for me and Jim. This takes me back to the moment when we decided to change care and hospitals over a year ago. With my last oncologist, her standard response in discussions, "I’ll tell you what to do and you do it" wasn’t acceptable. And I was getting tired of having to inform that medical team about the latest studies for treatment and testing.

Jim and I are aware of the path that metastatic breast cancer often follows. As a patient and advocate, I attend conferences—both in person and virtual. I keep myself informed about new drugs in the pipeline, advances in scientific research. Most valuable of all, I'm part of a support group with other patients who are undergoing the same exact treatment. This community of voices, stories, and suggestions is invaluable. Knowledge is power, and fear festers when you're facing the unknown.

My new treatment, which I started three days ago, has an average effectiveness of seven months. I hope to be one of those outliers and stay on it longer. But in the meantime, I'm not dwelling on the dates. Instead, I'm focusing on expanding my knowledge and increasing outreach to advocates, patients, scientists, and anyone newly diagnosed who suddenly has a million and one questions about what lies ahead.

Science aside, as humans, we’re not boxes and cans with dates stamped on our bodies. We are living, breathing, and feeling beings, and our well-being is deeply entwined with the love and support we receive in our lives. I've been extremely fortunate in that regard. Every day, I wake up feeling a profound sense of gratitude for the love that surrounds me.

I'm thankful to Jim, whose unwavering support has been my anchor; to my sons, whose strength and kindness inspire me; to my daughters-in-law, who have brought so much joy into our family; and to every one of you, my friends and extended family, for standing by me. Your encouragement, compassion, and presence are the lights that guide me. I cherish each moment we share, knowing that love is the most powerful medicine of all.

So, what’s next? A trip to London next July to meet readers and attend a book event. Jim and I are so excited to look forward and make plans. We’ll let the idea of shelf life be just that—a stamp on a box.

My love to you all!

Valentine's Day Update

Hello Dear Friends,

It’s been a while since I’ve posted anything here, so I thought I’d give you a health update.

To begin with, this being the month of February and with Valentine’s Day this past week, we wanted to wish you love and happiness EVERY day of the year! This photo was taken pretty much at the time when our own love affair started. In fact, this has to be our very first selfie!

In the personal news department, we've had an exciting start to the year. Low immunities allowed Shingles to afflict me. Then, when I went to the local Urgent Care for medication, I contracted COVID-19, courtesy of another patient who was coughing and hacking in the waiting room! And since we share everything, Jim came down with it before we even knew that I had it. And that's despite us having every vaccine available. (Except for kennel cough, rabies, and distemper...and the vet is all set to give us those when we take Marlo in for his next visit.)

Happily, after five days of Paxlovid anti-virals, we're both on the mend. I still have pain from the Shingles, but I’m toughing my way through it.

On other news of my cancer, the last scans did show problems with my kidney stent, but we couldn’t do anything about it because of low immunities. The good news is that once I started feeling better, all the appointments were back on the calendar. I’ll be seeing my oncologist next week to go over the rest of the results of my scans, and I’m already scheduled for a stent replacement the first week in March.

As William Arthur Ward once said, “Feeling gratitude and not expressing it is like wrapping a present and not giving it.”

One day at a time. One foot in front of the other. I’m grateful, grateful, grateful.  As always, thank you for your ongoing kindness and love and support. Your messages and cards are always a joy for us both. You ARE the best!

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.

First CT Scan Update of 2023

Hi Friends—

Today's appointment with the oncologist was a positive one. The scans show a slight improvement in the previous cancerous areas, and even more important, there are no new areas that are lighting up. This news is like a ray of sunshine breaking through the clouds after a stormy week. Actually, a stormy nine months (since my diagnosis).

Also, my dosage of chemo is being adjusted, and I will now be on two weeks on, two weeks off, which will allow my blood counts to improve in between treatments.

Jim and I want to express our sincere gratitude to all of you who have been praying for me, sending positive vibes, and keeping me and our family in your thoughts. Your love and support have been a constant source of comfort and encouragement, day after day. I am truly blessed to have such a wonderful community around me.

From the bottom of my heart, thank you all. Again, your love and support mean the world to all of us. We love you all and are incredibly grateful for each and every one of you.

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…

The Little Engine That Could

To all of my wonderful family and friends who’ve been asking about the results of my scans on November 4th. Here is a quick summary of the meeting with my oncologist and the urologist today.

My oncologist repeated that lobular breast cancer at the metastasized stage is a very difficult disease to track as it hides from scans. Still, she was incredibly positive and encouraged by how I feel. Here is some of what we discussed.

The line of treatment I’m on is currently working. There has been a reduction in ascites and less inflammation in my peritoneum. The brain MRIs were clear and showed just some inflammations from sinus infection.

What they suspected before as bone cancer—the breast cancer having metastasized in my spine—is confirmed, and now it’s showing in the sternum. I’m starting on a new regimen (injections) to treat that, in addition to the original targeted chemo.

The stent in the ureter is staying, and we’re changing it in January. Also, the report warns of colitis.

We’re again pushing my insurance company to approve an FES PET scan. My oncologist believes that will give us a better method of tracking this cancer.

How do I feel about all of this? GREAT. Do I consider it good news? ABSOLUTELY.

But most important of all, I’m extremely grateful to have your love and support, cheering me on every step of the way. Jim and I are The Little Engine That Could. We know we can…thanks to you.

Love you,

Nikoo