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!

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.

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

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 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.

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!

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!

Community and Gratitude

Jim and I have known each other since I was nineteen and he was twenty-three. We came from the opposite ends of the world, and the universe brought us together. Perhaps it was fated...because we were two halves of the same whole, souls united, hearts entwined, both of us storytellers at heart. Or maybe we met and fell in love because we had the same outlook on life and community and who we were and what responsibility we had, not only to ourselves and family, but the community around us. I know I am getting philosophical here. Yes, there were physical attractions too. ;-)

Through the years, we’ve moved many times, lived many places. Each time, it didn’t take months but days before we became part of the community. This post isn’t a list of everything we did and didn’t do. It’s not about our record of volunteering. It’s about how the people we’ve met have influenced our lives. Here is a couple of them:  

·      A volunteer hospice visit in Goshen, Connecticut. An elderly woman, confined in a wheelchair and living alone, surrounded with piles of dirty dishes and laundry, asking me not to bother with that stuff, but “Sit with me. Hold my hand and talk to me.” She wanted me to see her and be company with her, as no one saw her anymore.  

·      Stonington, Connecticut. Our elderly landlord telling us (when we were two young newlyweds): “Every day, give more than you get.”

Yesterday, you our friends, saw the two of us. You gave more to us than it’s ever possible for us to give. You are lifting our spirits and warming our hearts and making us feel loved. We’re grateful. We’re humbled.

We’re also stronger and ready to fight harder because of you. 

Thank you. And we love you.

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

Here is the link to that page.

Thank you!

Not Everyday's a Holiday

Courage. Strength. Glass more than half full. Positive attitude. My state of mind affects those I love and care for. For months now, I’ve lifted my chin, fisted my hands, and walked the walk.

But there’re days when everything crumbles around me. Yesterday was one of those days.

And why was that?

After two hours on the phone with two different ‘specialty’ pharmacies, I was told that one of my chemo drugs costs over $7,000 a month and no, they can’t get it to me by next week (This is a long weekend, after all, and I was speaking to them on Friday!) when I’m trying to start my regimen with it. This is the same drug that helps me dream of next summer—maybe two summers. Needless to say, the tears let loose, and then the doubts, and next the ugly questions of what is a life worth? I’m not going to give you a lecture on the economics of what’s the life worth. But the question in my mind is—in the amidst of chaos and suffering in the world, can one person really make a difference?

Then, the second shoe dropped. Over these past months, as Jim and I have been trying to get away from the reality of my sickness by losing ourselves in writing, we’ve done no advertising, no promotions, no outreach. Nor have the publishers who have the rights to our books done anything, so as a result, our sales have been declining. But yesterday was the worst ever as the returns on Amazon sales had our account in negative dollars. (Yes, this is a thing. Readers read the books then return them and get full refund from Amazon. Meanwhile, Amazon charges the author for high ‘delivery fees’.) Okay, the tears fell even harder.

Then, my pain level shot up and I couldn’t even stand up straight. I have ascites, and when it flairs, it has my stomach feel like disembowelment.

So, is there anything positive in this story? Am I full of ‘oh, poor me’, while people all over the world are experiencing feelings of fear and despair? What’s the role of one person? Does one person matter?

The good news part of this post…the head oncology pharmacist at the hospital I go to (it’s not her job to get involved as my insurance has them out-of-network), stepped in and called my insurance company. My diagnoses were finalized this week, and insurances move slow. She did her magic and got them to send their approval letter. Then, she put me in contact with Novartis (the pharma company) and told me about their rebate program to help with some of my co-payments. She also called CVS Specialties and demanded that they overnight the drugs, so we’ll be ready to get started next Wednesday. Marilou, the angel in the white coat, did all of that out of compassion when she heard me fall apart on the phone.

The Amazon part of this story? It’s sad, and there’s nothing I can do about it but hope that readers realize how much they’re hurting writers by reading and returning a book a week later. And as far as the rest of our income, there are only so many hats Jim and I can wear now. And those stresses are continuous.

Another nice part of the day was getting two flower deliveries from friends and also cards from (you know who you are as you’re reading this, and you’ve been sending me so much love and encouragement over these months).

My state of mind at the end of the day? Never underestimate how much one person can make a difference, even if it is just as simple as giving a smile at a stranger walking by or sending them a love you, thinking of you over the Internet. Love you, friends. Keep the smiles and virtual hugs and encouragement coming.

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

Zeroing in on What's Happening

June 23, 2022

Big step forward…

The gynecological oncologist operated on me this morning. Jim spoke to him afterwards, while I was in dreamland, trying to save a sailboat from sinking.

The surgeon found cancer ‘sprinkled’ throughout the abdomen and the pelvis floor. Took tissue and will know in 4-5 days what kind of cancer it is. They also inserted a port into my chest to make chemo treatments a little easier. A pretty clear hint about what treatment is going to involve.

He told Jim that he thinks the prognosis is “very good,” because I’m young and in good health overall and should handle the chemo well.

So, now we wait a few days. Then, we’ll know what direction we need to go. I’m home now and resting. Please keep us in your thoughts and prayers. Love you all.

As we make this journey together, you can make a difference in our life.

If you’d care to make a donation, our PayPal address is

NikooandJim@gmail.com

Courage

June 1st

 Long post...

 What have I (and Jim) been doing since March 16th?

·       Ultrasound ABDOMEN

·       CT UROGRAM W WO CONTRAST

·       Surgery Stent

·       PET / CT SKULL TO THIGH

·       Surgery biopsy and another stent

·       CANCER ANTIGEN blood tests

·       CT CHEST AND ABDOMEN AND PELVIS W/ CONTRAST

·       BONE SCAN WHOLE BODY

·       Today: ULTRASOUND OVARIES

·       Scheduled over the next two weeks:

·       MRI SPINE

·       Ultrasound Paracentesis

·       another surgery to be scheduled.

·       Countless blood tests...

Do we have results? no. Do we know what is wrong? No. Each test is contradictory and suspicious enough to warrant more tests.

 In so many words, I'm NOT normal. Well, Jim could have told my medical team that when we got started.

 Nineteen years ago, my breast cancer was hiding in a lymph node under my arm. A year later, colon cancer was brewing while I was still seven years away from my first colonoscopy. But thanks to a great medical team, I am alive today. So, the team of doctors I'm working with now are dedicated and searching and not giving up.

 And another reason why they're pushing so hard is that my oncologist in Connecticut ordered some genomic cancer testing (state-of-the-art four years ago) when I was moving to California, and the results showed where I had gene mutations. So, this gives them more reason.

 Yes, there're days when I feel like a pin cushion, but every day, every hour, I am thankful to my family, to you, to the higher powers smiling down on us, and to the team of doctors and nurses and schedulers who are superstars.

 Love you all.

Jim says there's a stretch of beach he's taking me to after this afternoon's doctor appointment.

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

More Test Results

May 16, 2022

Cautiously optimistic.

The oncologist and the urologist are to some degree ‘stumped’ by what’s happening to me. The oncologist used the words “believe it or not” twice today, and he even said, “we spend years studying science, but sometimes there are things we can’t predict.”

The PET scan results cleared the bone ‘shadows’ on the spine, which is amazing news. What was shown as bone metastases on the CT scan showed no activity on the PET Scan. We’ll take it!

However, the surgeon told us that the tumor he biopsied on the ureter and kidney looked “concerning,” meaning cancerous. The results of the biopsy are still being treated as inconclusive.

What’s happening next?

The biopsy tissue is being analyzed by another lab. Extensive bloodwork was taken to check genetic markers. Another biopsy of the kidney and ureter is scheduled for June. And we’re meeting again with the oncologist in July to see where we are.

Jim and I are celebrating, especially since tomorrow is our 42nd wedding anniversary. And the two of us are grateful to every one of you for your prayers and positivity and the incredible love you continue to send our way.

We’re blessed to have you in our lives.

Medical Professionals and Love

April 26, 2022

Harmony. Positivity. Voyage. Creativity.

This is the way I will approach this battle.

Once again, I find I am in awe of how kind the people are who work with cancer patients.

Today was PET scan day. Full body, looking for cancer. From the smiling receptionist Josh, who knew every patient’s name, to Jack the medical technician, who had the best meditation music ever AND found my vein on the first try. These professionals are awesome.

The test is behind me now. The next step is the biopsy on Monday.

Meanwhile, creativity is on the agenda. Jim and I are writing away this afternoon. Well, trying to stay focused.

Love you, friends. Smile and enjoy your today and make your plans for tomorrow. That’s what we’re doing.

And by the way, thank you once again for all the cards. They sit in a basket on my desk, and I smile every time I look over at them. I call them my ‘treasure trove’.

Patience vs Action

April 19, 2022

Patience has never been my strong suit. Never.

Well, Jim and I are learning quickly that we have to adopt it as a middle name.

The biopsy of fluid (ascites) drawn from my abdomen region, and a PET scan will be done next week.

The week after that, the doctors will decide if we have enough information or if I have to go through a bone biopsy, as well. Learning what a bone biopsy entails sort of encourages the development of patience. Even so, I want to know what exactly I’m facing, and what treatment we’ll be pursuing.

Meanwhile, there are writing days, beach walks, admiring the neighbors’ flowers, reading, more writing, and of course praying, practicing qigong, and…oh yes, forcing myself to be patient.

And the most important activity of all, being thankful for Jim and my kids and all of you. Love you all so much.

Here is some beauty from our local Southern California beach.

Appreciation for Empathy

April 13, 2022

 The oncologist visit…

The right and left sides of my brain i were out in full force today. Jim and I made a list of all the questions we were going to ask.

We prayed, chanted, and cheered each other up on the drive over to the oncologist. We were smiling when we walked into UCLA Cancer office in Laguna Hills, and the receptionist was beyond sweet. The nurse who took us in was also kind and cheerful and absolutely pleasant.

Then the doctor walked in. He greeted us and and the first thing he said was, “Nikoo, i’m sorry you’re going through this. But don’t worry, we’ll take care of you. “

This was when the tears came And then he hugged me.

These people are heroes in my eyes. Empathy is an amazing thing.

So, this is what’s ahead for me, right now…biopsies and a PET Scan over the next two weeks. We’ll start treatment around mid-May.

Love you, friends. Please keep the prayers and the positivity coming.