family love

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!

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.

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.

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.

 

Finding a New Me! (or Finding the Oxymoronic ‘New Normal’)

I’m one month into my oral chemo regimen, so last week I had the periodic checkup with my oncologist. Although she reminded me again that there is no cure, she thinks I’m doing great, but all the following things were also part of the conversation:

• Your white blood counts are extremely low

• You need a pelvis MRI over the next couple of weeks.

• Your next kidney stent replacement surgery is next week

• Tumor marker tests need to be done in September

• CT scan in October

• Early in the treatment, but we suspect this chemo is working, as your ascites pain is lessening, but we won’t really know until all the above tests are done.

In so many words, welcome to my new life, my new me, my new normal.

A statistic that isn’t always shared with patients is that nearly 30% of women diagnosed with early-stage breast cancer develop metastatic disease. There’re many of us who are dealing with this new normal.

It’s only been weeks, but I’ve already learned to accept imperfect test results and uncertainty in my day to day life.

And outside of the oncologist office?

A beautiful yellow bird flew right past my window about a minute ago, reminding me that I cannot succumb to worry about what cannot be known and what cannot be fixed. I live in the moment and appreciate what is around me. I continuously remind myself what my oncologist told me after the diagnoses. Your cancer is not “beatable” but “livable.” There are days when I look and feel well and healthy. There are days that I don’t. So, I live, live, live, every minute that I have, especially now that our son and daughter-in-law and two grandchildren are visiting, and our life is full of toothless and drooly smiles from the seven-month-old, and energetic running around with our four-year-old, who fits the words ‘Grandma’ and ‘Pop’ into every other sentence as she creates beautiful art.

But what will Jim and I do after they go home next week?

We’ll take our time to accept and adapt to the new new normal.

We’ll focus on what is most meaningful to us and brings us joy:

• each other

• Our spiritual journey and belief

• Facetime with grandchildren and their parents

• get together with our younger son and his amazing fiancée

• reach out to friends, family, and loved ones

• check in regularly with the amazing Metastatic Breast Cancer (MBC) support group that I am now a member of

• practice complementary therapies (like acupuncture and Qigong)

• eat the most nutritious diet for our needs

• exercise regularly

• manage stress…somehow

How do you live, live, live?


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

Here is the link to that page.