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.

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.

A Surprise Kidney Adventure

April 2, 2022

Good morning!

A little update and some observations, my loved ones…

Yesterday I went to the hospital for a procedure, and they ended up putting a stent in my ureter to drain the right kidney. It was closed off and looked ready to burst, they tell me. They’ll go back to biopsy the ureter in three weeks. One good thing, the surgeon says there is no sign of cancer in the bladder. And I’m already feeling so much better, as I don’t have the throbbing pain in my side.

Some pre-op observations:

-nurses are angels. I always knew that, but it got confirmed again yesterday.

- my right arm can’t be used for blood draw or pressure cuffs because of my past history with breast cancer. Wearing a pink cuff never is enough. So my attending nurse made it a fun activity to draw and tape and write on the arm. I think she had really DID have fun with it. So did I, watching her. Definitely a mood booster.

- left with one good arm, putting an IV line in is a nightmare. I regularly get poked multiple times. But yesterday, after one poke they called in the expert. He showed up with an ultrasound device. And sure enough, they got the vein on the next try.

- I can’t say enough about the kindness and sense of humor of the anesthesiologist. She loved the name ‘Nikoo’, and she and nurses decided to make up a song about Nikoo on the way to surgery. Of course, I was out cold halfway there.

Keep the prayers and good vibes coming. Love you all so much.

My Earlier Fight with Cancer

March 26, 2022

We can’t always be in control of all of the situations that happen to us in life, but we can change the way we experience them.

Nineteen years ago, when I was diagnosed with breast cancer, I reached out to you, my friends. Your support, your prayers helped me go through that journey.

And here I am back again.

I want to thank you for all your prayers, all your love. I am already a different person than the one who got the news two nights ago. Thank you.

Jim and I appreciate you. Keep the positivity coming.

We love you.

Trouble Brewing

March 25, 2022

I’ve decided it’s best to let you know what is happening, since more and more of you wonderful friends are showering us with texts.

A gallbladder scan last week, led to a CT scan yesterday and I (Nikoo) was called with the results last night by my doctor.

Bladder and bone cancer.

Prognosis, how advance it is and what is next depends on what the team at UCLA puts together.

I am in shock. Jim is my rock. And we sure can use all the prayer and love you’re sending us.