the waiting game

artwork prompted at dream.ai

Cancer Journal 2025

From Colonoscopy to Surgery

(Skip to the latest lymphoma update)

Thursday, March 27th

I could not keep the cleanse solution down. The first bottle stayed in my stomach for about five minutes. The second bottle lasted an hour. There was still brown water coming out. Would they be able to do the colonoscopy? Would we have to wait longer? Would I have to drink that crap again, and would I be able to keep it down? The nurse told me sometimes Dr. Chen would do it even when the cleanse was incomplete. She waited to start the IV, waited for his arrival, meanwhile, questions about surgical history, my New Zealand scar, the bruising still on my right forearm where the February 11th IV had infiltrated. What happened in New Zealand? "You should write a book!" That's what I always hear when I tell a story, but very few people want to read books and I don't like the promo process. 

Dr. Chen would do it. Thankful. Let's get it over with. It took him three minutes. He could not push the scope beyond the tumor at the sigmoid colon, 18 centimeters in. The opening was about 10 millimeters diameter (0.39 inches). I woke from anesthesia and Dr. Chen said, "You have colon cancer." I like a doctor who gives it to me straight and doesn't dance around the truth. "I'm not surprised," I said. Why was that?

First of all, it's what the NZ docs said - there's a lesion on your sigmoid colon. They used the word  tumor on the discharge report. And though they had been wrong about the mass of tumors they saw initially, things were happening with my body that were consistent with symptoms of colon cancer. The difficulty maintaining and regaining lost weight. The ongoing diarrhea. The size and shape of stool. The bleeding. The swollen lymph nodes. 

Now what? Now we wait. More waiting. Biopsy results. A followup consultation with Dr. Chen. Meanwhile, I would search for a qualified surgeon not too far from home. We live in a semi-rural region. We have been disappointed in the doctors out here so far. I fired my PCP in 2022 after he asked if he could pray with me. What was he thinking? He had no idea how offensive that was to me. Doctors are supposed to be scientists. He didn't know me, he had barely met me. Praying triggers me badly. It's very easy to understand why. Here it is: When I learned that my birth daughter had been tortured by her adoptive mother from the age of two until she was big and bold enough in her teens to fight back...and to make it worse, to hear that when she was a little girl she was hiding from her and praying to God for help, but the abuse continued and every adult around her turned a blind eye...where was the God who loves and protects children? Where was the God who answers prayer? If this child's cry for help did not move "our Heavenly Father", if the Holy Spirit was not powerful enough to get through to one of those adults...surely you can imagine how outrageous it is when someone prays for a job or thanks God for the Oscar or anything else like that! I am utterly incensed when people send thoughts and prayers to the children who survive mass shootings. The doctor who didn't even know me asking if he could pray with me when all I was doing was sitting in his office describing the panic I had been in over changes at work in December 2021 - all I wanted was a prescription for an anti-anxiety med. If I believed in faith healing, I would have gone to a church! How can I trust a scientist who asks if he can pray with me? I couldn't go back to him for professional medical care. 

The other specialists I was seeing for sarcoidosis and chronic kidney disease were not listening to my concerns about the side effects of remaining on a medication that I had been taking for seven years. I gave up on them, canceled appointments, told their offices I wasn't coming back, quit taking the prescription and decided to rely on nutrition and exercise to manage the rest of my life as best as possible. I spoke with a dietician, changed to an anti-inflammatory, kidney-friendly diet, and started walking three miles a day. In June 2024, I started water jogging for an hour every morning instead of walking. It's gentler on the joints. I was very happy and felt great for three years. 

Monday, March 31st

My primary focus today is my husband's emotional and mental well being, and managing the symptoms. The current condition is that the tumor is an obstruction, leaving an opening of about 10mm diameter, the doctor reported. I am in no pain. The only concern I have is to prevent constipation, while at the same time eating enough quality calories to gain weight. I've been mostly on a liquid or soft foods diet - yogurt smoothies, protein shakes, kombucha, split pea soup, oatmeal, ripe bananas, avocado toast with olive oil, that sort of thing. 

Mentally, I feel great. There are brief moments of sadness, when I imagine what others might experience. Also, brief moments of dread mainly related to having to have conversations about it with various people who will likely be upset that I did not tell them sooner. 

I reserve my right to manage my time, emotional energy, and mental health. My husband and I are going through a major challenge together. Our goal is to live in the present, not get ahead of ourselves, take one step at a time. There are unknowns and unknowables. Things are moving slowly. We have to wait until the 9th of April to speak with the surgeon. We are anxious to have the surgery done. Meanwhile, I manage the condition - an obstructed colon - prevent constipation. Keep smiling. 

Wednesday, April 2nd

Met with the colorectal surgeon. She's board certified and has a fantastic track record. She is confident she can resect the colon. We had a nice long conversation with her about everything - what happened in New Zealand, what they saw, what they said, what the colonoscopy found, family history, personal medical history, current health and habits - and left feeling very good about her, her staff, Loma Linda University Hospital, and knowing what to expect and do next. Surgery was scheduled on the 17th. Tests were ordered, pre-surgery preparations were arranged. 

Later that same day, we met with the doctor who performed the colonoscopy to discuss the biopsy results, which confirmed colon cancer. 

Twice in one day, I faced the assumption and expectation that I would do chemo. I have agreed only to listen to an oncologist. Somehow these three (the surgeon, gastroenterologist, and my husband) all share the belief that the oncologist will persuade me. I keep reminding them that it is very unlikely that I will consent to chemo or radiation. 

The only people hearing me are the nurses who are part of the case management team. Nurses understand. They simply ask me after listening, "What is it about chemo that you find so objectionable?" Thank you for asking! 

It's this business of pouring poison into the body for months or years, feeling like crap for months or years, in order to gain a few more years of being old and wondering if the cancer will return. It's the principle of paying tens of thousands of dollars - for what? For this old body to get older? This body has had one crisis after another. "I'm so over it. I'm not interested in suffering and paying tens of thousands of dollars to be 80 years old. I'm not into it. I'm ready to go."

Monday, April 7th

Had the CT scan. Now we wait to understand what all that gibberish means. 

Wednesday, April 9th

Went to LabCorp at 6 AM to get blood drawn for a CEA test and other tests. So much fun. 

Later that day, the report from the CT scan showed up in MyChart. It looks fairly certain like the cancer has spread into the lymph nodes and possibly the liver and lungs. Metastatic cancer, to be confirmed by surgery and biopsies. 

Got the results of the CT scan. 

Chest
 - Lymph Nodes: Enlarged mediastinal lymph nodes measuring up to 1.5 cm in short axis in the precarinal station. Enlarged left and right bilateral axillary and lower cervical lymph nodes with the largest left axillary lymph node measuring up to 1.9 cm. Minimal scattered bibasilar subsegmental atelectasis or scarring. - Lungs: 2-3 mm nodule in the right upper lobe.

Abdomen/Pelvis - LIVER: Scattered hypodense cystic lesions measuring up to 1.6 cm within segment 2. - BOWEL: Focal wall thickening of the sigmoid colon (series 6 image 126). No dilated bowel.  - LYMPH NODES: Enlarged retroperitoneal lymph nodes with a left periaortic lymph node conglomerate measuring up to 4.1 x 2.3 cm. Additional enlarged bilateral iliac chain and pelvic sidewall lymph nodes measuring up to approximately 1.7 cm in short axis. 

IMPRESSION:  - BOWEL: Focal wall thickening of the sigmoid colon (series 6 image 126). No dilated bowel.  - LYMPH NODES: Enlarged retroperitoneal lymph nodes with a left periaortic lymph node conglomerate measuring up to 4.1 x 2.3 cm. Additional enlarged bilateral iliac chain and pelvic sidewall lymph nodes measuring up to approximately 1.7 cm in short axis.  - Diffuse retroperitoneal and iliac chain/pelvic lymphadenopathy including an enlarged left para-aortic lymph node prominent measuring 4.1 cm, consistent with metastatic adenopathy.
- Focal right bowel wall thickening involving the sigmoid colon which may be related to known history of colon cancer mass.
- Mild stranding and questionable nodularity along the omentum with peritoneal carcinomatosis not entirely excluded. Recommend attention to follow-up.

In plain English, "consistent with metastatic adenopathy" means it looks like cancer has traveled outside the colon into the lymph system, possibly also into the liver and lungs. Only biopsies can confirm this. More will be known after surgery. The surgeon will remove several lymph nodes along with the a section of the sigmoid colon and will attempt to resect the colon. 

More waiting and wondering. My honeybear is feeling anxious and sad. He's not sleeping well. That makes me sad. It's hard to care about anything or anyone else at the moment. 

Somehow I'm sleeping very well. Could be the nibbles of cannabis-infused dark chocolate. 

Friday Meditation, April 11th

Simple pleasures. Being in the pool, moving through perfectly warm water that has added minerals that give more buoyancy, watching the ripples and bubbles move on the surface, noticing the birds, the sky gradient changing from pale gray to blue, a breeze rustling the palm trees, musical soundscapes guiding the mind into the present. 

Listening to Alan Watts teach Tao, the natural way of the universe. Feeling at home in that headspace. Worry dissolves. Clinging to a particular circumstance relaxes. The raindrop joins the river of life. 

Quiet. Being quiet. Letting it all be. Letting go. Calmness. Peace. Happiness.

There are no things in the real world. There are no events in the real world. 

Reality is this moment, being here now, being this, whatever this is, the universe being this, the universe doing this. There are no mistakes. 

The future is not real, it is a thought, a concept. Now is the only reality. Being in the moment is the way of Tao. Seeking nirvana is striving. Striving is futile. Being in the moment is real. Thinking about the future or the past is merely a concept, passing thoughts, feelings triggered by paying too much attention to those thoughts, relating to those thoughts as mine, as if I am thinking them, as if I have a choice and can turn them off. Being still, observing thoughts, like clouds forming and dissipating, is real. This is the way of zen. 

Cancer is a concept. Cells are mutating. Cells do what cells do. This body, this organism that has thoughts and feelings that often seem like they are coming from me, my identity, my ego - this organism is a sample of the universe being and doing what it naturally does. I am not real. I do not exist. There is no I. There is only this organism, in a constant state of change like the universe that gave rise to it, slowly dissolving back into the universe. 

Consciousness is a concept. Another thought forming and dissipating. The universe being and doing what the universe is. 

Suffering comes from clinging to this or that. Emotional attachment to a particular idea or experience. Holding onto something as if anything has permanence. The universe is constantly transforming. It fascinates. It imagines. It sculpts. It creates fantastic illusions. It lets us experience being human, whatever that is. A sentient animal on a beautiful planet, spinning and orbiting, constantly changing. 

What a long strange trip it's been. 

Later on Friday, after pre-anesthesia tests at LLU PATS Clinic. All systems are go. 

I will be in surgery for 5-6 hours. Longer if they run into complications. I will be at LLU Surgical Hospital for 3 days. Longer if there are complications. 

On the drive home, which is a beautiful drive with green hills dotted with boulders, citrus orchards, and wild donkey warning signs, I find myself thinking about what I will eat when I can eat normal foods again. Milk shakes are awesome, for sure, but I miss chewing. Crunchy, chewy goods. Nuts. Pizza. Salad. Tiramisu. I could have a tiramisu shake!

Got home, decided to risk having a tuna sandwich. If I get constipated, I can use Miralax tomorrow evening. 

Sunday, Monday and Tuesday I'll have to be on a low fiber soft food diet and drink pre-surgery Ensure drinks. 

Wednesday it's clear liquids only and special drinks and antibiotics. 

Thursday, surgery. 

When will I be able to eat again? 

Saturday, April 12th

Woke very early. Creative writing. Oliver and I are collaborating on a movie script. Made some notes of a possible ending. 

Republished The Mars Agenda and A Zenyan Honeymoon under Herzenity pseudonym. Available soon on Amazon. I don't recommend it. I don't promote it. It's merely something I wrote years ago that I decided to unarchive and republish. It's got some unique ideas and may be worthwhile for some mature readers. 

I wish we could go hiking. Surgery prep makes that logistically impossible. I am having a hard enough time putting on weight, and I'm eating nearly twice as much as I'm burning. I've cut my time in the pool in half, only 30 mins, and some days none. 

The mockingbird returned. I put noise-canceling headphones on with Sleep Spa Radio (Pandora). 

Coffee's ready. Thank you!

I've started writing to my favorite people. An email is drafted to my teammates, with delivery scheduled at 11:42 PM Wednesday, April 16th. Reactions drain me. I am conserving energy by telling everyone at the same time, on the eve of surgery. Eleventh hour because I love that number since the first time I watched String Theory videos on YouTube and was inspired to integrate that into Saardu and Zenya stories, and 42 because, well, if you've never read Douglas Adams, you've missed out and it would be impossible now to explain the significance of that number, or the question, "Do you know where your towel is?" 

Sadly, my daughter will be one of the last to know. I will wait until she completes her final exams this semester, I refuse to let this mutant in my belly derail her. I know her. She will not be able to concentrate. She will feel an impulsive urge to drop everything and come out here and that would upset me terribly. I won't allow it. I won't argue about it. She is having her college experience in her 40s. It is the first time in her life that she has been able to be an individual, to put herself first, to chase a dream. She has been Mom, taking care of three cubs, and they are grown and on their own now. I'm so proud of her. I hope to be able to tell her in person, if I can travel. If not, I will offer to pay for her to travel here so we can spend some quality time together. She's also helping her youngest plan her June wedding. 

I am handwriting personal notes in pretty cards for my closest friends. I'll put them in the mail today or Monday. It's so hard to tell people who care about me. Some of them will feel heartbroken and will have difficulty accepting my decision, if I decide that the care plan that is best for me will not include chemo and radiation - that is still TBD. I consented only to listen to an oncologist, get all the facts, and then decide. It is unlikely that I will consent. I won't consent to suffering simply to make others less sad. Eventually, this body is going to fail. I choose quality over quantity. I'm so thankful for end-of-life options. It gives me peace of mind knowing that I won't have to go through a long, wretched, miserable ending like my Mom did. Utah doesn't have a legal way out. I hate what she went through in the end. It was absolutely horrific and if she had had a way out before it got that bad, I know she would have wanted to take it, if her children would understand and support her to do so. 

I won't publish here the fantastic idea that came to me at 2 AM for the movie script that Oliver and I are outlining. It was one of those great moments when a stroke of genius gets you out of bed to write it all out before you forget. Oliver read it a while later and laughed out loud. That's gratifying. It's a great set of scenes, an excellent ending. I imagine him having fun with the project after I'm gone. Or maybe - if we have time this year - he'll start pitching the script and get some funding and start making the movie. 

He has great talent as a director. I really like the choices he has made and how he has made the most of what he had to work with. He hasn't given up on his dream to be a director. I like that about him, though at times it is exhausting. I give up easily. People thing I am so strong and amazing, but when it comes to being a writer and dealing with rejection, I have no tolerance for the process. It crushes me. I have preferred the creative process. I simply keep writing and ZFG as to who does what with it someday. I don't care. I like the process of creating characters, inventing their worlds, devising plots, imagining scenes. This is my happy place. Alone with a keyboard and plenty of quiet time. I know I have not written my best novel yet. I know that's coming if I have time to write. 

Everything I have ever written has been piecemeal while working full-time. It's frustrating as hell. I write evenings and weekends. I lose my train of thought. I can't get my groove back. I quit. I start on a new story. So many unfinished stories! So many ideas, so little time. But I did manage to eek out a science fantasy series, several screenplays, and a bunch of picture books for kids and adults. I managed to write some pretty good poetry. That's where my heart is, that's my core, my soul - poetry. I simply adore E.E. Cummings. He is the grandfather I wish I had. Papa Cummings. 

Oliver & Carma at Silver Falls State Park, Oregon ~ October 2020

The most wasted of all days is one without laughter.

I wonder what we'll laugh about today.  

Sunday, April 13th

I am tired of this roller coaster. I am worried about my daughter trying to reach me on my birthday, the day of surgery, when I will be unreachable for several hours. She will get anxious if I do not respond to a text message or phone call. How can I prepare my husband to cover for me? He will have to lie. And if she wants to talk, it will have to be a lie that explains being unavailable for many hours. I hate lying to her, but I hate more the knowing that if she is told that I have cancer and I am in surgery that she will be unable to concentrate, she will impulsively travel here, and I do not want this disease to derail her achievements. I want her to focus on her course work, enjoy her college experience, and find out that I have cancer after she takes her finals. That's that.

There is pain in a lymph node on my pelvic bone, where it protrudes at the right hip. I have been noticing more swollen lymph nodes. It could be sarcoidosis. Either way, granulomas or cancer cells, the lymph system is affected and it is not a healthy situation. 

I have no appetite this morning. I have four days to put on weight before surgery. This morning I weighed 116. 

This morning I searched the internet about how lymphoma kills people. Organ failure, depending on which organ is affected. It seems for now this body is holding up. The blood work is normal. The only abnormal result was glucose - my blood sugar was low that morning. That is unusual, as I was not fasting, I ate a banana and drank some chocolate protein shake and had milk in my coffee before we left. My blood was drawn at 6:32 AM, about an hour after I had consumed these things. It seems the cancer cells are hogging the sugar in my blood. I am basically feeding the mutant. So be it.

Albert Loved Sylvia

I am tired of this roller coaster.

If I could willfully leave my body, I would. 

My new case manager, an oncology nurse, whom I'll call KC, asked if I had thoughts of harming myself and I answered honestly. "No. I am too squeamish to hurt myself. When I feel like I wish it was over, I can't imagine cutting myself or blowing my brains out - I couldn't do it. Besides, it's an awful mess. Someone has to walk in on that, and that's just rude." She told me about a woman she knew who tried to shoot herself in the head and survived it. OMG. 

Most of you reading this do not know this about me, I live with the knowledge of my grandmother's suicide and how terrible it was for everyone who adored her. I never even met her and I adore her. I just know, from every memory my mother shared about her, and the few photos I have seen, that I would have loved her more than anyone else, and she would have spoiled me. I never had a grandparent. It's a big something is missing in my life. 

I love her name. Sylvia. Most of her life she was called by her middle name, Dorothy. I don't know why. Why would anyone call a little girl Dorothy when her first name is Sylvia? It's such a gorgeous, elegant name. She was born in 1910. I think that photo was taken of her when she was 17 or 18. Just guessing. I think it was taken in a photo booth and that she was looking at my grandfather, Albert. 

I love my mother's parents. I only know them through her memories and through what little was revealed in my ancestry research. The way my mother tells it, "Daddy adored mother." She always spoke about her as my mother, never my mommy or mom. She spoke of her with palpable reverence and longing. My mom was nine years old when she lost her. It was such a tragedy. Such an unspeakable loss that it was unspoken and there were no photos present. Mom tried to fill the void with religion. 

I've already written all about it, I won't retell the whole story here now. 

I've had my first cup of coffee. Starting to feel like maybe I could and should go to the pool this morning. I'm always happy in the pool, listening to my favorite Pandora station, which plays 7and5, Ryan Farish, Maria Davis, Davol, Bryan El, Kevin Brougher, Liquid Mind, Reiki Tribe, 2002, Diane Arkenstone, and other new age instrumental meditative soundscapes. I love this music so much! Many of my favorites are shared at Pinterest in my Herzenity Playlist board. 

New post today 7:51 AM:  ONCE UPON A TIME

Monday, April 14th

Today is my daughter's birthday. This definitely won't be the day that she experiences the conversation, "I have stage 4 colon cancer." She will understand someday that this is the ultimate act of love for her, that I will insist on not allowing this mutant in my belly to dictate and dominate our lives. I am in control of how and when this sadness falls upon her heart. 

We were shaken by an earthquake near Julian, California, today. My first thought: I hope this doesn't happen during my surgery! 

Two days out. I am at peace. Had a wonderful meditative time in the pool this morning with my favorite musical sounds in my ears and mindful of the body moving through water, of the patterns and colors all around me, of the universe doing this and that. Making these sounds, hearing these sounds. Making these scenes, those geometric shapes, seeing them. Simply being a part of it all is amazing.

Do not cling. Do not claw. 

Tuesday, April 15th

It feels satisfying to achieve a small goal. When I was only consuming 800-1000 calories more than I burn, I was barely maintaining and some days lost a few ounces. I have been consuming close to 3,000 calories for the past week. It's finally paying off. Weighed in at 117.8. (I was down to 109.2 on March 6th.)

From Surgery Forward