scans

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.

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…

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.


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.