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.

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 Linen Skirt is Back

Do you have a piece of clothing in your closet that is over a decade old? Maybe two decades? Did you contemplate donating it but at the last minute the sentimental value had you bury it deeper in there? Even though it no longer fit. Or the color was faded. Or the fabric was just a little frayed along the edges.

For me, this precious piece of clothing is a long linen skirt that I bought back in 2002. Moved across the country, washed so many times, packed and repacked and pushed to the darkest corner of the closet, this was the skirt that I wore to thirty sessions of radiation while I was going through treatment for my first bout with breast cancer. The skirt was my good luck charm, my happy skirt, my I’m going-to-surface-on the-other side-okay garment.

So, guess what I was doing this morning at 6:00 am, deep in my closet? Looking for that linen skirt. And I found it. And I wore it. And it fit! After a thirty-pound weight loss over the past four months, a lot of clothes now fit.

This morning, I wore it to my first ‘official’ chemo treatment.

Many of you have either been through it yourself, or you have family or friends who have gone or are going through cancer treatment, so let’s not talk about the side effects (though some of them appear to be instant and affecting me right now). Instead, let’s talk about the kindness and compassion of nurses and doctors who work in oncology and how I truly believe these people are angels on earth.

They get your name right. They have a sense of humor and make you laugh. Before walking into the treatment room, they read about you and then they ask about books and grandchildren and weekend plans. They treat you like a friend and not only a patient. At our request, they even take the time to bring in Marilou (the oncology pharmacist) so I can meet her and thank her in person.

And, of course, they say, “What a cool skirt. Where did you buy it?”

Then Jim and I come home and see all the messages and contributions and love that you have sent us during these few hours that we were gone. Here, today, we are blessed with so many more angels. Every one of you.

Thank you, friends. I’m a writer, but right now I’m a little short on words to express my gratitude for everything that you’re doing for us.

All I can say is that I’m looking forward to the day when I can fold up that skirt and tuck it away until the next battle.

Take a mental survey of your closet and tell me what’s the oldest piece in there. I’ll bet there’s sentimental value attached.

 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