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.

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

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.