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.

Hi Dear Friend,

October is Breast Cancer Awareness Month. This year’s theme, No one should face breast cancer alone, serves as a reminder for providers and patients to consider the many ways that we can partner in the prevention, detection, and treatment of breast cancer.

In keeping with that theme, I (Nikoo) attended the International Invasive Lobular Breast Cancer conference in Pittsburgh a couple of weeks ago, where I served on a panel and had the opportunity to share my story with leading cancer doctors and researchers from all over the world. Coming home armed with a great deal of knowledge, I'm tremendously energized to help and be an advocate for other patients. And I find myself in a better place to deal with the challenges of my own metastatic breast cancer.

Many of our friends ask me the names of good places to donate during October. One thing you should know before you donate. Out of all the funds that are raised for breast cancer organizations, less than 7% actually goes toward research. So please, if you decide to donate, support research. To help, CLICK HERE FOR A LIST of reliable organizations that your money can help to make a difference.

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…

Community and Gratitude

Jim and I have known each other since I was nineteen and he was twenty-three. We came from the opposite ends of the world, and the universe brought us together. Perhaps it was fated...because we were two halves of the same whole, souls united, hearts entwined, both of us storytellers at heart. Or maybe we met and fell in love because we had the same outlook on life and community and who we were and what responsibility we had, not only to ourselves and family, but the community around us. I know I am getting philosophical here. Yes, there were physical attractions too. ;-)

Through the years, we’ve moved many times, lived many places. Each time, it didn’t take months but days before we became part of the community. This post isn’t a list of everything we did and didn’t do. It’s not about our record of volunteering. It’s about how the people we’ve met have influenced our lives. Here is a couple of them:  

·      A volunteer hospice visit in Goshen, Connecticut. An elderly woman, confined in a wheelchair and living alone, surrounded with piles of dirty dishes and laundry, asking me not to bother with that stuff, but “Sit with me. Hold my hand and talk to me.” She wanted me to see her and be company with her, as no one saw her anymore.  

·      Stonington, Connecticut. Our elderly landlord telling us (when we were two young newlyweds): “Every day, give more than you get.”

Yesterday, you our friends, saw the two of us. You gave more to us than it’s ever possible for us to give. You are lifting our spirits and warming our hearts and making us feel loved. We’re grateful. We’re humbled.

We’re also stronger and ready to fight harder because of you. 

Thank you. And we love you.

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

Here is the link to that page.

Thank you!

A Definite Diagnosis and a Plan...

June 29, 2022

Finally…

Four months of tests and I now have a diagnosis.

Metastatic lobular breast cancer with metastasis to peritoneum, ascites, and possibly bone cancer.

Is it tough to hear this? Yes.

It means that the breast cancer that I fought nineteen years ago was not defeated, just pushed back. It has been lurking, slowly growing, and waiting for a moment to resurface elsewhere in my body. The cancer cells that are sprinkled throughout my abdomen are EXACTLY the same breast cancer cells.

My reaction? All the things cancer can NOT DO. The words out of the oncologist’s mouth were clear and POSITIVE: ”This is serious. But although it’s not curable, it’s treatable.”

So, it begins. I have already started one medication. Another starts in a couple of weeks, once I recover from the surgery. As I mentioned earlier, I now have a chemo port in my chest that they’ll use to draw blood for tests. No poking me with a needle every two weeks.

This treatment should work to slow the growth and spread of the cancer for 2-5 years, before it develops a resistance. Then, we go from there. Who can tell what new treatments will be available then?

I couldn’t get to this point, this state of mind, without you my friends. Please, keep all the prayers and positivity coming, and please remember all the things cancer CANNOT do.

Love you.

And thank you to the person who posted online the image we’ve borrowed and inserted here. Much love to you.

We’ve been resisting this, but some of our friends have been pressing us to let them help. Medical costs are gradually mounting, so…if you care to make a donation, our PayPal address is

NikooandJim@gmail.com