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!

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.

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!

Holiday Wishes!

With the holidays upon us once again, we find that we are, as always, thankful for all the blessings, all the friendships, and all the love that you send us, day in and day out, all year long. As many of you know, metastatic breast cancer has been a major part of our life these past two years, but we now understand the challenging “what-ifs” of the disease.

What if the next scan shows more progression? What if we can’t afford care? What if I lose my insurance? What if… ?

Still, what if we let go of all that pain, sadness, and anger—just for a minute—without ignoring the reality that they can return any time. What if—for an instant—we let joy, love, hope, and happiness take over?

This past year, we expanded our knowledge about Lobular Breast Cancer. I (Nikoo) attended an in-person medical conference in Pittsburgh and felt like a new person afterward, armed with more knowledge and knowing that there are brilliant researchers working on this disease. The two of us also got involved with advocacy—patient-to-patient and caregiver-to-caregiver.

Eighteen months post-diagnosis, my prognosis is measured in three-month windows. Scan to scan. Still, our mantra is to wish for peace for all human beings and to count our blessings.

As always and because of life’s necessities, we’re writing and have a new novel scheduled for release in March. And our new online bookstore is fully operational through our website.

Our wish for you this holiday season is that your blessings overwhelm your shadows, that your good ‘what ifs’ overcome the bad, and that your lives overflow with peace and contentment.

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.

Taking Steps — Empower, Educate, Advocate…

Fifteen months have passed since my life took an unexpected turn with a diagnosis of metastatic breast cancer. Since then, anytime there is silence on our social media accounts, I get private messages asking, ‘How are you doing?’ And it warms my heart to know that you're with me on this journey.

My weeks are a symphony of scans and appointments, a continuous rhythm that has become my new normal. And yes, I will always be on one or another type of chemo. And no, I won’t be done with it. Ever. When it comes to discomfort, I have pain. I’ll always have some pain, but I can live with it.

To those friends and family who have followed my journey through this blog, you remember the challenging six months leading to my diagnosis. The confusion, the fear—those emotions were all too real. And the emotional toll that followed was profound. The statistics were terrifying.

“Only one-third of women diagnosed with metastatic breast cancer in the U.S. live for 5 years after diagnosis.”

I needed some space to get comfortable with my diagnosis. I needed time to find my strength and search for a purpose for the time I have left. Yes, writing is our profession. It pays the bills, so that had to continue. But there were deeper questions that kept me up at night.

What more can I do with the time I've been given?

How can I help people who are going through the often scary stages of diagnosis?

How can I support others living with MBC, now and in the future?

Jim and I have always believed in the power of giving back. Early in our marriage, our wise landlord, Tom Kepple, shared a lesson that stayed with us: "Always give more than you take." In a way, his words were an echo of Martin Luther King, Jr.: "Life's most persistent and urgent question is, what are you doing for others?"

With those words as our guide, Jim and I decided to dedicate our time and energy to advocacy. I found my calling in patient advocacy, while Jim is getting involved with caregiver advocacy.

Advocacy starts with each of us, as individuals, speaking up. It's when the appointment schedules don't align with our lives, when medications bring debilitating side effects, when second and third opinions are essential. And later, it’s when we share our experiences, offering empathy and practical insights.

Breast cancer is a multifaceted challenge, and my focus is on helping patients ask questions and finding resources. I decided early on to share my journey, and hopefully, to inspire others in embracing life fully.

The realm of advocacy is vast and unending, but I'm committed to immersing myself in it, learning, and being a voice for change. As I prepare to attend my first in-person medical conference as a patient advocate, I'm mindful that there are no long-term guarantees for MBC patients like me. However, I refuse to let statistics define my path. I am a unique statistic, ready to empower, educate, advocate…and live.

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

Nikoo Speaking for Breast Cancer Awareness Month

A special message from Nikoo…

METAvivor exists to sustain hope for those living with stage 4 metastatic breast cancer (MBC). We are a volunteer-led, non-profit organization that funds vital research to help improve the longevity and quality of life for MBC patients. Passionately committed patients, we rally public attention to the urgent needs of the MBC community, help patients find strength through support and purpose, and make every dollar count as we work with researchers to extend and improve quality of life for MBC patients.

Visit http://www.metavivor.org

Advocacy is Important Business

Many of you ask how you could help…and we’re grateful you’ve asked!

Here is one way. Please contact your Congressmen and Senator’s offices and ask them to make these bills a priority. These two important Congressional bills have been sitting on the House and Senate floors for year and half. We need to get them moving.

Metastatic Breast Cancer patients don’t have lobbyists working on their behalf; they have volunteers. Join my team and please help ‘all’ cancer patients. Thank you. And please share this message with your friends and family.

• The Metastatic Breast Cancer Access to Care Act (House: H.R. 3183, Senate S. 1312): This legislation would fast-track disability and federal healthcare benefits for individuals with metastatic breast cancer. Under current law, a person with metastatic breast cancer must wait five months after applying for Social Security Disability benefits to begin receiving those payments. Also, that person must wait an additional 24 months after disability benefits begin before receiving Medicare insurance coverage. This delay creates obvious hardships for people with metastatic breast cancer as they struggle to pay medical expenses. This delay also ensures that many people with MBC are unable to collect the benefits that they paid into the system because of their reduced lifespan, currently averaging 33 months after diagnosis.

• The Cancer Drug Parity Act (House: H.R. 4385, Senate: S. 3080): This legislation would prevent various agencies and health insurers from refusing to pay for more costly medications that doctors prescribe because they are best for their patients. It would also prevent insurers from charging different co-pays for identical treatments in different locations, such as home versus a doctor’s office, or a doctor’s office versus a hospital.

Thanks!

A quick health report

Many of you—our kind friends and family—have been asking, so here’s a quick update on what’s happening with me these days.

 This past week I finished my third month of targeted chemo. My schedule is three weeks on and one week off to give a chance for my body to recover and then we start all over again. I met with my oncologist last week. The tumor marker blood test shows slight improvement, which is great news. We celebrate what we can. My oncologist is also battling my insurance provider to get approval on an FES PET Scan, newly FDA-approved. This diagnostic test will help us decide if I’m on the right treatment or not. Please wish us luck on that.

I was also approached by METAvivor.org to be featured in the month of October for their Patient Voices campaign.

 This is what the organization is all about. METAvivor exists to sustain hope for those living with Stage 4 Metastatic Breast Cancer (MBC). We are a volunteer-led, non-profit organization that funds vital research to help improve the longevity and quality of life for MBC patients. Passionately committed patients ourselves, we rally public attention to the urgent needs of the MBC community, help patients find strength through support and purpose, and make every dollar count as we work with researchers to extend and improve quality of life for MBC patients.

 100% of breast cancer deaths occur because of metastasis, and almost 100% of the people whose breast cancer has metastasized will die from it. In the United States alone, this means that more than 40,000 vibrant lives are lost each year.

 Despite these stark realities, the popular breast cancer fundraising movements give on average only 2-5% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of Stage 4 breast cancer. And while only 6% - 10% of initial breast cancer diagnoses are metastatic, 30% of the patients diagnosed with earlier stage breast cancer will eventually develop Stage 4 breast cancer and die.

 This does not need to happen.  Many metastasis researchers believe that metastatic breast cancer could become a chronic, rather than terminal, disease if only there were more money to do the research necessary to develop effective treatments.

 Please visit www.Metavivor.org if you’d like to learn more, and I’ll make sure to share my video with you during the month of October.

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

Here is the link to that page.

A Brief Stop in Meltdown City

Places and times where it’s better not to have an emotional meltdown:

·      Dinner table (with the family all present)

·      Facetiming with the grandchildren

·      Zoom call with Grandma

·      Produce department at the grocery store 

·      Walking the dog with the neighbor 

·      Airport terminal

·      Legoland (or Sesame Place or Disneyland...)

·      Other (feel free to add to this list for me, will you?)

Well, today was a strange and unexpected meltdown day.

A week ago, I had another ureter stent replacement surgery and more biopsies. Unlike the last two times, the healing is taking its own sweet time. Of course, it all makes sense as I’m at the end of second month of chemo...and my white blood count is extremely wonky at the moment.

This morning, I went in for an MRI of the pelvis. I arrived on time, answered the hundred thousand questions that they already had answers to and then was led into the room where the machine is located. Just so you know, I am not claustrophobic. The magnetic resonance machines they were using on me today was open at both ends. No zippers or metal buttons or snaps on my clothes, so I didn’t even have to change. I was asked to lie down on a clean cloth, prior to being slid into a donut hole. It was explained to me that about halfway through, the dye would have to be injected. But for now, they put a pink headset over my ears and stuffed a squishy alarm (just in case) into one hand.

Everything was going way too smoothly. My mind was calm. My thoughts cheerful. Great music to listen to. The machine had its own melody (sort of) and a terrible sense of rhythm. I was focusing on my deep breathing. Twenty minutes later. Half an hour. Maybe it was a minute. It’s easy to lose track of time in there.

BUZZ!

“We have to slide you out.”

They slid me out.

“We have to do a search of the pockets in your pants.”

And gasp, what did we find? A used mask.

Did you know there are little metal staples or something in those masks? I didn’t.

“Okay, we have to start from the beginning.”

On go the headphones. In we go into the machine.

Suddenly, thoughts. Those darn runaway, unpredictable thoughts. Stop. Try to think your own thoughts. Think of work, writing. What was our writing goal for today? for this week?

BUZZ!

“We’re sliding you out.”

This time, nothing was wrong. Two technicians were ready to inject the dye. Yes, it takes two people to find my vein. It’s in my records.

So, we got started. One poke. The vein collapsed when the needle hit it. Second try. Nothing. Not their fault as I was telling them where to poke. But, because of my surgery last week, the veins are still bruised. I mentioned the port in my chest. Unfortunately, these technicians aren’t authorized to access it. So, they go after a nurse in the hospital.

A few minutes later—maybe it was half an hour later, I’m not sure—this white-haired nurse walks in. Immediately, she’s wrapping my arms in a warm blanket. Her voice is gentle. The eyes above the mask are kind. She explains to me that she’ll try the vein one more time. If she can’t do it, she’ll access the port.

Well, she got it. In goes the contrast stuff. Back into the tunnel I go. Almost done.

Not quite.

The tears started dripping down from the corners of my eyes. This is my life now was suddenly a very depressing thought. It was surprising to feel this so deeply.

“Are you okay?”

I heard the technician’s voice in my ear, and I mumbled, “Yes.”

I’d forgotten, they have cameras and can see me.

I decided to make myself think happy thoughts. Jim. My kids. My beautiful family.

Even more tears than before start pouring out of me.

Did I tell you I’m one of those people who sobs at weddings? I cry during commercials. I get choked up when a puppy licks my face. When I see puppies doing just about anything.

I never realized until that moment how awkward and helpless it was to lie in that machine and have a crying jag and not be able to wipe your eyes...or move, at all. Of course, I could have stopped the test at any time by squeezing the plastic bulb. But no way. The contrast fluid was in my body, and we were GOING TO GET THROUGH THIS.

Half an hour later, or maybe twenty minutes—anyway, it felt like eternity—I slid out of the tube.

The forty-five minute appointment had taken two and half hours. I was the first appointment, and most likely they’d be running late for the rest of the day. I thought of all the people who were probably cursing me up and down in the waiting room.

One of the technicians held a box of tissue out to me. I looked into her kind face. She didn’t seem stressed, at all.

I guess this wasn’t the first time she’d seen patients have a meltdown in the MRI machine.  

It occurs to me now, though. If I’m going to melt down, I’d rather do it at Disneyland.

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

Here is the link to that page.

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.

The Doctor in the House

This post is as much about the love of my life, Jim, as it is about me. And for those of you who know us well, there’s some things here that YOU don’t even know.

To begin, Jim knows facts. His incredible brain is packed with information, much of it random. Ask him anything and he knows the answer. If he doesn’t, he’ll never admit it. He just makes it up. Then, he goes on Wikipedia and makes a page for it...or doctors up a page that’s there. One time, we were talking about a 19th century writer. Jim said he was a recluse, and when he died, his dogs ate him before the authorities broke in and found the body. Ten minutes after our discussion, Jim showed up with a printout of the Wikipedia page “proving” it. Well, he doesn’t do that anymore...not since I reported him. ;-)  

But honestly, he’d be a perfect candidate for Jeopardy.

Some years into our marriage, before our writing career took off, Jim went and got his PhD while I was working as an engineer. Right out of graduate school, he got a job teaching college in Pennsylvania. After that, the mail that came for him was generally addressed to ‘Dr. James McGoldrick’.

The first challenge to Jim’s doctoral status came from our mailman who stopped him one day by the mailbox. The man wanted a second opinion on some over-the-counter medication he was taking for an illness. Jim politely said that he should consult his own doctor.  

The mailman (disappointed): “What kind of doctor are you?”

Jim: “A word doctor.”

The mailman then proceeded to show Jim a suspicious mole on his nose. Our mailman was sort of hard of hearing.

It was right about then that I started saying that we have a doctor in the house. It actually started right after I bought Jim a book about Reflexology and Acupressure. Of course, he memorized it all after one reading.

From then on, from bumps and bruises to colds and stomach aches, our boys grew up running to Pop to fix it. They trusted him to have answer to any illness in the universe. Again, if he didn’t know the answer, he’d either look it up...or make it up. Somehow, the boys survived.

Fast forward to 2003, the first time I was diagnosed with breast cancer. (And no, Jim was not allowed to open up either the Reflexology book or Wikipedia.) However, my oncology team at Yale/New Haven Hospital believed that a patient benefits greatly with a wide range of complementary therapies. A dear friend of mine, a Reiki master, drove all the way from Rhode Island to Connecticut numerous times to administer Reiki to me during course of my treatments. Well, Jim watched closely and started reading up on it. Pretty soon, I was reaching out to him for the Reiki. Needless to say, my sweetheart’s reputation grew (both in our household and amongst the local letter carriers). Not only did he know facts, now he practiced complementary medicine (without a license...but don’t report him; the statute of limitations has run out.).

That brings us to now.

All of you who have been following our blog know that I went through four months of testing, with inconclusive results. The imaging tests—like MRI, PET and CT scans—were mostly clear but I continued to have medically unexplained symptoms. I was sick, and I knew I was sick. Thankfully, I wasn’t brushed off by my doctors. My oncologist said at some point that something was definitely wrong, but to pinpoint it, a biopsy was needed. So they went in, found something “concerning” on the kidney. But the results came back, “Nada.”

When my team of doctors came up with the suggestion that since they couldn’t find anything, they’d repeat such-and-such a test in three months, I reached for my in-house doctor. The two of us rolled up our sleeves and went to work. If there’s one thing we know how to do, it’s research. And I do live with a human encyclopedia.

We both knew the Internet is filled with misinformation, especially about cancer diagnoses and care. But at the same time, one can find research articles such as this one from the MD Anderson Cancer Center in Houston:  https://www.mdanderson.org/cancerwise/What-is-invasive-lobular-carcinoma-8-insights-on-lobular-breast-cancer.h00-159539745.html

“Lobular breast cancer spreads to the gastrointestinal and urinary tracts. Lobular breast cancer tends to spread to unusual sites, such as the lining of the gastrointestinal and urinary tracts. Patients often notice they feel constipated or have changes with urination. Like in the breast, the cancer cells grow linearly and cause these tracts to narrow. It’s like a lasso that tightens over time. Because the cells grow in sheets and not a mass, metastasis is also difficult to detect.”

I had Lobular Breast Cancer nineteen years ago. All my worst troubles were gastrointestinal. More research and we learned that imaging wouldn’t identify Invasive Lobular Cancer (ILC).

What did we do next? Made appointments with doctors outside of our team. And couple of weeks later, exploratory surgery found the cancer. Yes, MD Anderson’s article was correct.

Did we diagnose my situation before the doctors did? Certainly not.

Were we proactive in terms of making sure no stone goes unturned? Yes.

Did I have a great doctor in the house? Absolutely.

And the day we sat down with my oncologist to go over the treatment plan, Jim and I pulled our chairs up to the table. The conversation was respectful, with relief all the way around. We knew how hard the team worked to diagnose my cancer, and they knew that I—with Jim beside me—was going to be a hands-on and educated patient.

Since then, I’ve seen how closely Jim paid attention to things when the nurses worked on the port on my chest. And how he watched the dozens of needles going in during my acupuncture session.

I wonder what’s running through his head…  

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

Here is the link to that page.

 Thank you!

Day by Day

A friend recently asked me how you do it. How do you stay positive in light of your diagnosis?

My answer was, I take it Day by Day! That's my motto. I open my eyes and right away try to find something that I can smile about. Jim's hair in his sleep. The dog snoring. A poster a friend sent me that says: "They whispered to her, 'You cannot withstand the storm.' ... 'I am the storm,' she whispered back." On my desk I have a stack of get-well cards I’ve received. I keep every one of them in a basket and go through them when I'm down.

My positive attitude started nineteen years ago for the sake of my kids. I shed many tears when they weren't watching. But Jim and I set up a little code word that he would mention when I got choked up. For us, the term was, 'soccer field'. The words referred to the years when we both coached our older son Cyrus in peewee soccer. He would sit on the grass and pick dandelions while younger son Sam clutched to my leg like a koala as I tried to coach the rest of the kids. The laughter was therapy.

This time around, as you probably know, the cancer is very serious. The oncologist on the first visit told me she can't cure me and can only treat me. Well, there was not much I could do with that news but to make a decision about what the rest of my life was going to be like.

For years, I was a hospice volunteer. I’ve lost best friends and family members to this disease. I know how difficult it is to stay positive. It’s natural to feel upset, angry, and frightened.

Here’s something I saw some time ago on the Cancer Society website: “Many people with cancer are told by family and friends to stay positive. But sadness, distress, depression, fear, and anxiety are all normal feelings when learning to deal with cancer. Ignoring these feelings or not talking about them can make the person with cancer feel alone. And this can make it harder for them to cope with how they are feeling.”

So, I decided to go public with my feelings. Talk about my situation. Reach out to my community of family, friends, neighbors. It was my own form of therapy. I knew that optimism wouldn't cure me. Scientifically speaking, it wouldn't extend my life. But it could lead to a better quality of life for me, for Jim, for our kids, for those I can reach who are going through a difficult time.

This is one of the responses I got from a friend I worked with thirty years ago:"...even now, Nikoo, you are helping me to be strong and positive as I battle this horrible disease. I was diagnosed with a very rare and aggressive cancer called..." She poured out her struggles, and we've been communicating since through email.

I joined an online support group made up only of people who have my exact type of cancer. The group started in 2018, has 750 members on the list, but half of them are already deceased. A downer at first, but a great source of camaraderie and resources for those of us who are still in the game.

My cancer has spread to my stomach; they believe it is already in the bones. My constant pain is in my stomach. Eating hurts. Despite this discomfort, I still believe in breathing the air, enjoying beauty, keeping negative thoughts away. I try to not let my imagination run away. I’m living for today and tomorrow…and smiling. I look for those code words that snap me out of my down moments.

And what else? In my first bout with cancer, I started a journal. A notebook and a pen. I never went back and reread what I wrote. That outlet was a one-way conversation with my notebook therapist. An outpouring of feelings. I allowed myself to experience my feelings. Fifteen minutes a day, every day. I always felt better after.

Every day, I search for ways of improving today and tomorrow. Family. A good movie. Comedy helps. Music. Walks. Exercise. Laughter. And reaching out to friends. Those in my support network, you who are reading this, lift my spirits. You don’t know it, but you’re there when I need a shoulder to cry on or an ear to listen to how I am feeling.

The end is going to catch up with all of us, and yes, I’m a bit resentful that it's coming this way for me. Still, my attitude is, I am not going to let cancer ruin the life I have left. I am not fighting this disease. There's no fight. It’s all about improving the quality of my life and of all those around me, near and far. Day by Day.

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

Here is the link to that page.

Thank you!

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!