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.

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

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 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!

Information about Metastatic Breast Cancer

Hi—

Jim here.

Friends and family have been asking about exactly what Nikoo is facing as she battles Metastatic Breast Cancer. Beth Celli, a new friend of ours, shared the video we’re including in this post. It is only a few minutes long, but it provides a great deal of information about the disease.

Nikoo was treated for Lobular Breast Cancer 19 years ago. The cancer cells in her body now are exactly the same as the original cancer cells; they have now spread into her abdomen and beyond.

Please watch this video, and feel free to contact us or leave a comment here on this blog.

Finally, we want to thank all of you for the stunning acts of kindness and generosity that have been directed toward her. Both of us have felt our hearts swell immeasurably by the outpouring of love coming from our fellow writers, readers, and the romance community. The fighting spirit is strong here, and you have made it even stronger.

Thank you. Believe me, we love you back.

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

Here is the link to that page.

Thank you!