Hello T&T readers. It's been awhile since I've posted.

I'm back to write about another trial. However, this is a trial of a different sort. It's my own trial.

Today I start a regimen of aggressive chemotherapy to try to save my life.

I've been diagnosed with metastatic urothelial carcinoma of the retroperitoneal lymph nodes. It is considered Stage 3 to 4. Since my cancer started in urothelial tissue, it is treated as bladder cancer. This type of cancer is rare in women. To this day, my doctors have not found an originating tumor.

The initial stage of my treatment will be two chemo drugs for six months. I will be on a 21 day cycle. On day one, I'll receive Cisplatin and Gemzar. On day eight, Gemzar again. Wait two weeks and start the cycle again. Depending on how I do, my oncologist may add radiation, if it's even possible.

For 13 years Trials & Tribulations reported on high-profile murder trials in Los Angeles County: Phil Spector, Conrad Murray, James Fayed, Cameron Brown, Kelly Soo Park, Michael Gargiulo, Lonnie Franklin, Jr., Gerhard Becker and Stephanie Lazarus. I had the opportunity to observe some amazing judges and follow the careers of talented prosecutors, public defenders and law enforcement officers, all dedicated public servants.

By following my life-long interest in true crime, I got the opportunity to meet several crime reporters and journalists I greatly admired: Steven Mikulan, Cirian McEvoy, Eric Leonard, Terri Keith, Miraim Hernandez, Pat LaLama, Greg Fisher, Josh Mankiewicz, Dominick Dunne, and Matthew McGough. One of the most rewarding aspects of my public service was hearing from the victim's loved ones how much my trial coverage meant to them. How much they appreciated the work that I did.

Three years ago my life changed and I slowly stepped away from my passion of attending high-profile trials. I still miss being inside a courtroom watching the legal process unfold. It was a joy that helped me escape from the realities of my life. The reality was, I was trapped in a horrible marriage.

Here's the abridged version of what happened over the past 36 months.

In March 2018 I informed my husband I wanted a divorce. In July, I filed to get a restraining order and have the LA County Sheriffs remove him from our home.

October 2018 I sold the house. The following month, my petition to divorce my husband of 17 years was granted. For a few months I was homeless, living in Extended Stay America while my real estate agent (Barbara Patchis) found me a home I could afford. If you need a real estate agent in Los Angeles, Barbara is fantastic.

In the beginning of December that year, I bought a mobile home in a senior park. Once I moved in, I formed new friendships with great neighbors in this little community. Over the next 12 months, I worked towards getting to know myself again, rebuilding my life after years of emotional abuse living with a brilliant man teetering on the edge of his own sanity.

While going through my divorce, I reached out and reconnected with a dear friend in Ohio I met in my 20's, my "bestie," Bobbie.  We had a painful ending to our friendship 24 years ago and she was hesitant at first to let me back into her life. But I'm so grateful she did. It is truly a gift to have her love and support at this time in my life.

In late February 2019, I received a text message on Facebook from a friend I hadn't heard from in over a year. But the message wasn't from her, it was from her nephew. The message was that my friend had died on February 14 in New York and that her brother, Richard, had traveled from his home in Ohio to attend her funeral. The nephew said Richard was devastated by the loss of his sister. And while in New York, he talked privately with his nephew about how much he missed me. The nephew's message said, "I'm sure a call from you would make his day."

And that's how I reconnected with "Ricky" the man I fell in love with in Ohio when I was 19 years old. In 1978 I left Ohio to come live with him in California. Ricky is why ended up in California.

In March  2019, Ricky flew from Ohio to California to see me and I fell in love once again. We had not seen each other in 39 years.

The sale of my home did not give me much of a savings to live on. I had to find a way to make a living. I did not have a lot of options. I could reach way back to my banking career, but I'd left that in the late '80's for the healing arts. For over 30 years I've been a "bodyworker".

I've had some amazing teachers in the art of therapeutic massage, trigger point therapy, post-surgical massage and Ida Rolf's core work, structural integration, which realigns the body with gravity. I had worked in chiropractic offices, beauty salons, and medically supervised exercise clubs. I've received referrals from psychiatrists, psychotherapists, chiropractors and plastic surgeons. Eight years after I got married, I semi-retired from that career to help manage my ex-husband's business. But getting a practice going again would take time that I didn't have. I needed something stable. Something I could build on, but still be in the healing arts field and helping others.

Over the next nine months I made a few trips to Ohio and Ricky came to see me in California.

I went to school to become a Certified Nursing Assistant (CNA). I graduated from the program January 4, 2020. I passed my State of California Department of Health Exam on February 20. I found a job and started working at a sub-acute respiratory nursing facility in early March. I worked the second shift, 3-11:30pm.  It was hard work. I was the oldest CNA, working with people 30 years younger than me. I was hoping I could work for six months then maybe take a 4-5 day trip to Ohio.

Then the pandemic hit. The State of California shut down March 15, 2020. The last time I saw Ricky was February 4, 2020.

Nursing facilities across the country were hit hard with Covid-19. Where I worked, 95% of the patients were on oxygen and/or ventilators. The management of the facility was able to refuse to accept patients who had tested positive for Covid. However, my employer had a common problem that most hospitals and nursing facilities have and that is they don't have enough CNA's to take care of all the patients. And that's how I started working 1-2 double shifts a week, in other words, 16 hours straight.

In early July 2020, I came home exhausted after a double shift. When I went to the bathroom that morning, I had massive amounts of blood in my urine. I could feel several blood clots pass.

To be continued .......

Watch this space. I will be writing about how it took so long to discover the type of cancer I had as well as my journey undergoing chemotherapy in the months ahead.

The previous post can be found HERE.

Day 1 Wrap-up
Overall, it went pretty well. I felt good after the initial infusion and accomplished some gardening. I cut back the last small section of overgrown geraniums alongside my deck. It wasn't much but it felt good. I didn't get a lot of sleep because I stayed up late finishing my post on Day 1. I'll probably not do that anymore. Maybe I'll write the following day but I might get back into the habit of writing late at night like I did when I was covering the LA County Superior Court.

MEDICAL/LIFE HISTORY
In my last post I talked about finding massive amounts of blood in my urine. After that experience I never worked a double shift again. But I'd like to back-up a bit and tell you some background history on my health.

1954-1967
I wet the bed as a child all the way into eighth grade. It was a humiliation and had a big impact on my childhood. I don't have any memory of being taken to doctors about this problem as a child, but I may have. My sibling can remember me as a child, my face beet red trying to hold it in, trying not to have to go to the bathroom. For eighth grade, my father and step-mother decided I needed to go to boarding school. I don't remember that time very well. I have a memory of my step-mother commenting that the school made her pay for a new mattress. I also remember that the school's headmistress would come into my room at night to wake me to go to the bathroom.

1973-1976
In my 20's, I was seeing a urologist because I kept getting urinary tract infections. They were chronic. My urinary sphincter often froze up and I couldn't release urine. In 1976 it was discovered I had a sizeable kidney stone lodged in my left ureter tube and my doctor was amazed that I didn't have any pain. I had surgery to remove the stone and re-implant the ureter in another spot in my bladder.  Sixteen days in the hospital and a long, smile shaped scar.

It was either around that time or a few years later in California that my urologist told me that my left kidney was small and mostly drainage tissue. There was hardly any filtering tissue at all. I also found out that my bladder was stretched out and had lost all it's elasticity. For the problem with my sphincter, the urologist said a surgery could be performed to open it more, but it could mean that afterwards I might leak, and not be able to control my urine. The other option was using a catheter. I self cathed for many years, but I still had the chronic infections.

1985-1998
In my mid 30's, I learned to develop my stomach muscles and was able to release my sphincter so I didn't have to self cath. That was a big relief because at 33 I lost my job as internal bank auditor and became a bodyworker. Think about this coincidence. The day after I graduated from massage therapy school, I was laid off from my banking job. Self employed, I could no longer afford health insurance. I went to free or budget health clinics when I needed to see a doctor.

I also relied quite a bit on alternative medicine, always reading the latest book, searching for help with my digestion issues, urinary tract infections and acne that I couldn't get rid of. I went to herbalists, even an iridologist who photographed my eyes. I tried so many different diets but nothing seemed to help.

The Blood Type Diet
In 1998 I picked up a book called Eat Right 4 Your Type: 4 Blood Types, 4 Diets by Dr. Peter D'Adamo. It made so much sense to me. It was grounded in science, based on the documented physiological differences between the blood types. And it talked about dietary food lectins that could agglutinate the blood type of one person but not another. This diet changed my life. My digestive issues and acne were under control. I lost the weight I had gained. When I purchased my first computer and had access to the Internet, the first place I went was Dr. D'Adamo's website and joined his forum.  Dr. D'Adamo often participated and answered questions himself. As his website expanded I devoured every article he wrote. I was a regular participant on the forum and invited to be a Moderator. I donated my time as a Moderator for many years. In 2012 I got to meet Dr. D'Adamo in person. Many of the people I met in that community I'm still connected with on Facebook today. When I knew I might be sick, the first person I contacted was Dr. D'Adamo, inquiring about becoming a patient. I scheduled a consult for after I got a final diagnosis. I have always been and continue to be a champion of Dr. D'Adamo's work.

2001-2008
During the first eight years of my marriage I had health insurance again and could see a physician. In 2008, my then husband completely ripped out his right distal biceps tendon and lost his job. He was in a cast for over 9 months and on disability for 18 months. During his recovery, he studied and passed the State of Californa's Contractor's exam for his chosen field. He tried to make it as an independent contractor. But money was always scarce. We could not afford health insurance. I never had health insurance again until I turned 65 and qualified for Medicare.

Before I turned 65 in 2019, I was already in school to be a Certified Nursing Assistant (CNA).  Since I wasn't employed, I decided to opt out of Medicare and go with an HMO plan with Blue Cross. Miraculously, I found a doctor of osteopathic medicine in the network, a sharp woman a few miles from my home. I had healthcare again.

2018 Energy Drinks
After filing for divorce, my then husband, in the throws of his own health problems with heart disease, had turned our home, garage and front yard into an episode of "Extreme Hoarding". It was going to take several months to get the house respectable again. After I was able to get him removed from the house, it was a race to try to get the house presentable for a real estate agent to list. I was at the large scrap metal recycling places on a weekly basis cleaning out the things he had accumulation over the years and the hoarding inside the house.

During that time I relied heavily on energy drinks to get through the hard work. I was buying it by the caseload. My close friends knew I was drinking this and chastised me often. I sometimes drank six to eight cans a day. I knew it wasn't healthy. I knew they were bad for me. But it was the only thing that was giving me the energy to get the job done. I had to get the house presentable for sale. I was running out of money. I had borrowed so much from friends. They needed to be paid back from the sale of the house. Months later, after the house was sold and I had moved into my new home I was able to get off the energy drinks cold turkey. I never drank them again until I started doing double shifts at my new job.

March - July 2020
I liked many of my coworkers but the job was wrecking my body. The one thing that is a constant in this industry, CNA jobs are hard work. An old injury in my left ankle from my motorcycle days -I broke it in four places- developed arthritis and made it difficult for me to stand more than a several hours without pain. It was the combination of standing, pulling rolling and having to turn heavy patients over 250 pounds. I consulted with a sports medicine doctor. There was an injection treatment they could try that was approved for knees, but not ankles. It would not be covered by insurance, so that option was out for me. They prescribed ankle exercises to try to build up the muscles surrounding my ankle. I was eating over-the-counter pain killers throughout my shift and realized I needed a different CNA job. One where I wasn't on my feet so much. I didn't have a clue how to find that job. Still, I knew I had to stay in this job for at least six months before I tried to find another job.

Working a double shift was a financial bonus. If they asked you to stay for the next shift, they increased your hourly by several dollars and that new hourly figure you got at time-and-a-half until you reached 12 hours. The next four hours were double time. However, there's a catch. If an RN found you napping on the job, you were immediately fired. I started drinking energy drinks again to stay awake for the 8 hours of the second shift. That's how I was able to work two double shifts in a week and not fall asleep. When I finished my double shift and and came home Sunday morning July 12, 2020 I found blood and blood clots in my urine.

July 2020
I was really panicked. I had no memory of ever having blood in my urine before. Especially not like this. I contacted my doctor and sent her pictures of a urine collection I did in a glass container. She called me the following Monday and said she could see the blood clots in the photo. She ordered a urine sample test and said she wanted to refer me to a urologist. I resisted seeing a urologist at first, but I did go to the lab and gave a urine sample on Wednesday. Unfortunately, there was still quite a bit of blood in my urine and the lab couldn't determine anything. By Thursday my urine was clear. I thought I was okay.

That Thursday was another work day for me. On my way into work, I stopped and picked up an energy drink and drank half of it before work. Within two and a half hours of drinking the energy drink I had blood in my urine again. I felt I had found the culprit to the bloody urine.

I notified my doctor through the online portal that I had found the culprit. She did not believe for one minute that the energy drink was the culprit. She still wanted me to give another urine sample, which I did and to see a urologist. Turns out I did have a urinary tract infection, I just never felt it. And I did end up going to see a urologist, July 22.

The urologist wanted to do a cystoscopy (where they put a camera inside your bladder and look around) and a CT Urogram, that takes pictures of the entire urinary system. I was convinced that the bleeding was related to the monster drinks and didn't need any more tests. The urologist, not so much. The urologist said that if I self cathed once a day before I went to bed, that alone would help me to not get so many urinary tract infections. The doctor had to talk me into the cystoscopy. I had the cystoscopy three weeks later. During the cystoscopy my doctor said that they did not see anything unusual except some inflammation. At the time I thought, that's great we're done. But the urologist insisted on the CT Urogram to be sure. I had the CT Urogram August 31.

A New Job
In the meantime I got a heads up on a job that sounded like a perfect fit for me. The company had an open position. It was for a Home Health Aide for hospice patients. I would be going to patients homes in Los Angeles County and helping them with their ADL's, also known as "activities of daily living" that they could not accomplish on their own. Mostly it meant getting the patient clean, getting them dressed and sometimes preparing a sandwich or putting their clothes away. And it also meant keeping them clean when they were bed bound and unable to move. I was not afraid to work hospice, to work with dying patients. In the early 90's I helped a friend set up the Volunteer AIDS Massage Project. I trained massage therapists to work on patients with AIDS in hospitals. That work was some of the most rewarding I've ever experienced.

When I went to school for my CNA license, I also got the additional certification for Home Health Aide.  From the time I first called about the job, to applying online, getting an in-person interview, receiving an offer of employment then my first day at the new job, that took exactly one month.

I was over the moon. A new job, a reputable company, great benefits, an increase in salary, fewer hours and no longer a lot of standing on my feet. It was a big relief to know that I wouldn't be in pain from all the standing.

I didn't know until I was six weeks into my new job that the CT Urogram on August 31, indicated there might be a ticking time bomb inside my body.

More to come.....

DAY 2
I got a bit more sleep than the day before. I had a good morning. I ate breakfast a bit late, around 9:45am. It was an omelette made with broccolini, spinach and a grass-fed beef hotdog cut into pieces. I got a few bites into it and started to experience a queasy stomach. I was able to eat the hotdog, a bit of egg and threw the rest in the trash. The thought of any more food was making me nauseous. I dozed on the sofa for a couple hours and friends took me to Trader Joe's to do some light grocery shopping. I felt weak in the grocery store. The rest of the day was a queasy stomach and body chills. I wrapped myself in blankets on the sofa. I kept checking my temperature but it only got above 98.4 once. I wanted to get some Mother's Day cards written but I I had the queasy stomach the rest of the day. I had to force myself to eat and I only ate a few bites at a time. I had body chills until I fell asleep on the sofa.

DAY 3
My body chills were gone but I still had the queasy stomach. I still had no appetite for food. I wasn't sure I could eat without getting nauseous and throwing up. You don't want to throw up on chemo. If you throw up 4-5 times in a 24 hour period you have to go to the hospital to get hydrated.

Before I started chemo, I asked Dr. D'Adamo about naturopathic nausea remedies. His remedy is 1tsp raw ginger juice per hour until the nausea goes away. He also recommends the homeopathic formula IPECACUANHA 30c. I bought organic ginger and the homeopathic. On Sunday, before my first infusion I manually juiced a pound and a half of raw ginger into juice and put it in the freezer.

I put some raw ginger juice in my water bottle and my green tea. That helped. I ate a whole small lamb chop and a few bites of fish and my stomach held firm. It took me several hours to finish my morning veggies, jicama and bell pepper.

The advice on the Chemocare website is to eat small meals more often. I was able to get some food down, but barely enough to constitute a single meal.

I was also able to accomplish some chores like laundry, feeding the hummingbirds and work on a sewing order. I even felt well enough to get some plants transferred to new pots in my potted garden.

Below is a photo of my potted garden at night.

 

 The previous post can be found HERE.

I left off my story mentioning the CT Urogram.

Settling Into a New Job
I'm about five weeks into my new job. I still can't believe my good fortune. I drive all over Los Angeles County to see patients and help them with their ADL's (activities of daily living). Many people would absolutely hate the driving. I didn't mind it at all. It sort of reminded me of my motorcycle days when I rode my '68 BMW R60/2, or later my fast '83 GS750E Suzuki through the Malibu canyons. Or even earlier when I traveled cross country on my BMW in 4.5 days, by myself. Not exactly the same thing, I know. But for me, driving an hour or more to see a patient was not a negative. If I had a long drive home at the end of the day, I would call Ricky and he would keep me company until I got home.

The only thing I was struggling with was learning "the tablet". I'm old school. When I was an internal bank auditor, in the 70-80's, everything was paper. Everything. And my most recent employer as a CNA did not have electronic medical records. Everything was paper. They had not been automated. My experience with emerging tech and using different programs was very limited. I still get exasperated with my smart phone at times.

The tablet has everything. Your company email, the training programs you must complete in your first 90 days. It's where the monthly zoom meetings would be held because of Covid-19. It's where you log into your assigned appointments and document your work. The tablet was my daily frustration. In those first few weeks I was calling one of the RN's to help me get out of a jam when I forgot to "start" a visit or "log out" of a visit. I needed help navigating the program that was used to document our work hours and record it in the patient's medical record.

I was also trying to do the best I could not to screw up during my 90 day probation period. The first 90 days in any job is when they can get rid of you for minor screw ups. My main focus was to get through my first 90 days and get the many hours of online training done by the assigned deadlines.

The Urologist Calls
It's Monday October 13. I'm on a long drive from West Hollywood to Long Beach. It's to see my last patient who just entered the active dying process. Traffic is horrible. The freeways are jammed and Google has me on surface streets that are also jammed. I'm driving maybe 10-15 mph. It's going to take me an hour to get to the harbor area. My phone rings. There's no place for me to pull over at all. I can see it's the urologist calling. I answer the phone, greeting him by name. He was surprised that I knew who it was. I told him his name came up on my phone.

He said he was going through his files and he realized that he had never followed up with me after the CT Urogram. He tells me I have an 8 millimeter kidney stone in my left kidney. His next words were unusual, something like: And by the way there are some enlarged lymph nodes. It's probably nothing, these things usually are, however, it's recommended you get a PET scan in three months.

At the time, I didn't know what a PET scan was for, so I asked him. He said it was to get better photos. I then asked why three months. He then replied: To see if anything grows. I then asked, "What are they looking for?" He paused a moment and said: Cancer.

In that moment your world changes. Everything changes.

Blood Type and Illness
From my 20 plus years of reading and following the Blood Type Diet, I knew that there is quite a bit of scientific evidence in the medical literature that certain illnesses are more susceptible in some blood types than others. It doesn't mean that other blood types won't get that illness, it just means there is a higher prevalence of that illness in one blood type over another.

On Page 322 in Eat Right 4 Your Type (Revised & Updated Edition), Dr. D'Adamo writes:

"Does cancer find an inherently more fertile ground to grow and develop in the body of one blood type than in another? The answer is a definite yes.

There is undeniable evidence that persons with Type A or Type AB blood have an overall higher rate of cancer and poorer odds of survival than Type O and Type B."

Thursday, the lithotripsy procedure went very smoothly. I asked the anesthesiologist if I would get the same drug Dr. Conrad Murray gave Michael Jackson, propofol.  She said, "No, you would not be under enough with that drug. We need to make sure your body is completely still during the procedure." When I mentioned to her how my kidney stone was found, she commented that the blood in my urine back in July was likely caused by the stone and not the energy drink. I'm not convinced. I think the energy drink, probably in concert with the stone, triggered the massive bleed.

You have to remember that during all this, I felt fine. I didn't have any pain whatsoever. I know I was a bit more tired than usual and I had bouts of insomnia. But generally, I felt good.

Waiting Game & Prayer
That was the worst part, waiting. It's interesting, as I look back, how some memories are crystal clear and others are fuzzy. They have a vagueness about them, like an unfocused dream where nothing makes sense.

I don't remember the exact day I spoke to the urologist, but I believe it was near my birthday, Thanksgiving week. I didn't see him in his office. He called me on the phone. I didn't get to read the PET scan report. I don't think I even asked about it. All I remember him telling me is that he was referring me to an oncologist. Did that mean I definitely had cancer? I truly didn't know. 

What I felt was terrified of the unknown and the realities of my life. I lived alone. My family was on the east coast. How was I going to support myself if I could not work? I don't have lots and lots of girlfriends who live close by. I have a handful of girlfriends I've been lucky to have known for close to 30 years. Both Bobbie, who I met when I was 20, and Sandy, who I met in massage school, live out of state. I have three long-time girlfriends who are here in California but they all live 20 to 30 miles away in different directions. And one, Julienne is in a wheelchair.

I have had a daily ritual ever since the exceptional Elaine Giftos Wright came to my little home and transformed it with the art of Feng Shui. I had met Elaine almost 20 years ago when she applied her skills to my first house.

Elaine had me hang a wind chime in a corner of my bedroom, which corresponded to the knowledge area of my home. And she suggested a prayer for me to say when I rang my wind chime every morning.

I've just alerted the universe to send in more abundance and prosperity. And my mind is clear to make the most perfect choices for my life and my benefit.

Day 6-7
Each day, I continued to feel more normal. I was getting my appetite back. I was able to eat more and work in my garden. The thought of cooked veggies still was not appetizing, but I was able to get through some.

Day 8
My appointment for my second dose of Gemzar was at 1:30pm. This was going to be a much shorter appointment. Getting just the one drug will only take an hour.

Like the week before, my dear friends who live on my same street, took me to my appointment. I told them it would only be a little over an hour. Afterwards, we would all go grocery shopping at Trader Joe's. 

When I was called back to the tiny treatment area, the same chair with the bird photo above it was free. I also noticed for the first time, that the comfy chairs were recliners! The reason I couldn't get the chair to go back last time was because I hadn't pushed it away from the wall.

Not wanting to get cold again, I brought my favorite blankie with me. It's a double fleece and flannel blanket I made for myself. It's a fabric print by artist Debbie Mumm with kitties chasing mice on the flannel and the fleece.

The previous post can be found HERE.

When I last left off, I was being referred to an oncologist.

Oncology
It's December 7th, over three months since the CT Urogram showed I had enlarged lymph nodes in my pelvis and abdomen. I'm in the waiting room of the oncologist's office. I'm on edge, nervous as to what is going to happen. There are small, 3-inch striped candy canes in a dish on the counter. I take four and put them in my purse. Then the door opens and my name is called. After my blood pressure and weight is recorded I'm led into an exam room.

My oncologist was an older woman, probably near or past my age, who attended medical school in Putero Rico. She had been working in oncology and hematology since the early '80's. I gathered from her extensive bio that she had been working with cancer patients for a long time.

She asked me to describe my journey to her office. I talked about the double sifts, drinking all the energy drinks, finding massive amounts of blood in my urine, etc.

My oncologist hands me a copy of the PET scan report. I try to grasp the numbers I'm reading in regards to how much the lymph nodes grew in the two-and-a-half months between the CT Urogram and the PET scan on November 11. I learn that not only is the growth size important, it's also how much sugar the lymph nodes absorb.

She explains the PET scan. "They give you glucose. Malignant cells take more glucose. The normal lymph cell uptake of sugar is around 2.5. With cancer cells it's way more." I can see the numbers listed beside the individual lymph nodes described in the report. The oncologist tells me, "Some of the sugar numbers are 24.0 to 25.0. This I don't like. Normal lymph should not take so much sugar." Not only the size, but the activity she didn't like.

At the very end of the PET scan, the report said the following:

Excerpt from my PET scan report.

My oncologist tells me she suspects I have lymphoma, based on the PET scan and how quickly the lymph nodes grew. She categorized what she suspected as "fast growing." From what I was hearing and trying to wrap my head around, fast growing lymphomas can be cured. My oncologist tells me the other types of lymphoma that are slow growing, from the time she started medical school to today, cannot be cured, but patients can live a long time. 

 She tells me the treatment will be chemotherapy, or radiation or both. She mentions a female patient who went onto have five children with lymphoma. She did add though, "It could be something else that has invaded the lymph. The only way to be sure is to do a biopsy."My oncologist also added that at some point they would need to get a bone marrow sample. I already knew what was involved in getting bone marrow extracted. When she said that my mind went, Holy shit! How will I manage that and work? How long would I be hospitalized for that? Everything she told me I related to my work and having to tell my patients I would not be able to see them that week.

Interpretation of the Pet Scan
"No other hypermetabolic abnormality is identified..." What I would understand this to mean later is that the PET scan did not show any other area in my torso where cells were absorbing large amounts of sugar. The scan did not show an originating tumor area. This is why my oncologist initially suspected I had lymphoma.

"Nephrolithiasis." That's the 8mm kidney stone that was broken apart via the lithotripsy the day after the PET scan.

Stuck
I was in tears by the end of the appointment. I was overwhelmed by what I was hearing. I could not process it fully. I was stuck. I didn't know what to do. I hung onto my oncologist's words

"it could be something else that has invaded the lymph"

applying magical thinking that this could be something other, and that my enlarged lymph nodes were not cancer. Still, December 7 was the last day I had any kind of candy, sweets, chocolate or other forms of commercial sugar.

Ticking
There was a ticking time bomb in my body and I hung onto that magical thinking, that this was something other. These lymph nodes were large back on August 31, when the CT Urogram was taken. I didn't have a copy of the CT Urogram report but the PET scan referenced the location of every enlarged lymph node found in the CT Urogram. All had increased in size. The PET scan also showed more lymph nodes that had become enlarged since the CT Urogram, clearly indicating that the ticking time bomb had continued to spread during those three months. There were about two handfuls of lymph nodes that were enlarged.

I tried saying out loud, "I have lymphoma," but it never felt right to me. I didn't know why that was. Magical thinking. Over the next several weeks, I mulled over in my mind what options I had. There were so few. I worried I would not be able to keep my house if I could not work. That overshadowed everything. 

Coming to terms with the fact that I was sick and needed to move forward on finding out what I had took a couple weeks. Once I had accepted it, I scheduled the biopsy for the first available appointment.

Biopsy
When I called, the first available date was January 19. It would be a CT guided biopsy at a radiology center in Encino. I had to be there at 9am. A friend in my mobile home park would take me and pick me back up.

Fortunately, this date meant that only two of my patients would be impacted. I would be able to move other regular Tuesday patients to another day. I took notes on the preparation I had to do, because this facility did not have a set of instructions they could email me. It was all over the phone. No food a certain number of hours before the procedure and no water two hours before. I asked if I would be able to work the next day. I was told, "Yes." I would be under a general anesthesia for the procedure. That was the plan.

When I was checking in, an RN went over my new patient form and my health history in detail. There was a video I had to watch all about my radiologist, this biopsy procedure and what to expect. She also went over most of the same information that I was given over the phone for pre-op, except this time, there was this additional piece of information that was new. They RN told me that I would not be allowed to drive the next day.

Woah. Back up. No one ever said that in the initial phone instructions that I would not be able to drive. I told them that I only had today off from work. I could not call into work right now and tell them I can't work the next day. My company did not know I was getting a biopsy. I couldn't just suddenly tell my supervisor, oh by the way, I can't come into work tomorrow. I don't do that. That's not me. I had patients and their families that were counting on me to show up.

The RN then said to me that I would have to reschedule the procedure. I told her there had to be another option. I could not reschedule. I could not delay waiting another two or three weeks to find out if I had cancer or not.

She went to speak to the doctor. The doctor gave me the option of being awake during the procedure and using a local anesthetic instead of a genearal. I replied, "Let's do it."

The lymph node the radiologist was going to biopsy was one of the largest lymph nodes, over 2 centimeters across. It was deep in my right pelvis area, close to the right lilac bone. The radiologist would be going through muscle tissue and hopefully avoiding nerve tissue. I learned that they could not see nerves on the CT scan.

I liked the fact that they had little changing rooms with lockers in them for your belongings. You took the key to your locker with you into the procedure room. The RN who took my medical history was with me the entire time, from intake to recovery room. The CT technician was very nice, too. He explained the steps that the CT scan would go through. Again, I would have to have my arms over my head for the procedure. I would have to try not to move. If I moved at all, especially after the needle went in, that could screw up trying to target the lymph node.

First, the CT technician did an overview scan of my pelvic area so they could get a baseline, or starting point. Then there would be more scanning for placement of the needle. Afterwords, the radiologist started to numb up the area of my pelvis where he was going to insert the needle. Then he waited for it to take effect. I did not feel the initial incision, but when the doctor first inserted the needle and started to go deeper into my body, he must have hit a nerve. I really felt that. My lower body jerked reflexively. The CT technician tells the radiologist my body moved too much. The needle came out. The technician had to start over.

This time the radiologist administered way more local anesthetic and waited. He inserted the needle again and I didn't feel any pain or discomfort. I concentrated hard on trying not to move any part of my body and to lie as still as possible. The CT tech explained that the doctor would then be inserting the instrument through the needle to take the biopsy. Once the instrument reaches the targeted lymph node, the radiologist will snip the biopsy sample. He told me that I will hear a click of the instrument. The radiologist snipped six samples. I could sense it each time the instrument went into the needle. I heard the "snap" it made and the instrument being pulled back out of the needle. I felt it each time.

And that was it. The procedure was all done. The RN told me I did great. I asked how long I was on the table. The CT technician told me I was on the table for about 35 minutes. It seemed like it was much longer. When it came time to slide off the table to the gurney, I could not move my right leg. The radiologist must have put enough anesthetic in my abdomen to take down an elephant. I had to manually drag my leg with my arms onto the gurney so I could go back to recovery.

I was famished. I asked for and drank three little boxes of cranberry juice. They kept offering me wheat snacks but I declined. After a half hour, I tried to stand. I was still too wobbly on my legs. The RN brought me my phone from my locker and I called my friend to let them know I'd probably be ready to go in another 20-30 minutes. I was able to stand and walk on my own 20 minutes later. I got dressed and waited for my friend to arrive to pick me up. And that was it. The biopsy was over. I could relax the rest of the day. I was told I needed to keep the bandage on my incision for a couple days and to try not to get it wet. I did not have any complications from the procedure.

Before I left, I found out that with the lab company my HMO uses, the analysis would take about a week to get a report to my doctor. My next appointment with my oncologist was scheduled for February 2. I went back to work the next day and counted down the days to February 2.

More to come.....

Day 11
I had another very good day. No side effects of the Gemzar on Day 8. I spent the day doing laundry and getting some meals pre-cooked and frozen for the not so great days to come. Later in the afternoon, I worked on getting Mother's Day gifts wrapped to go in the mail to my family and my friend Bobbie. When I was done, I called Ricky for our regular nighttime phone call. The only post office in the San Fernando Valley that's open until 7pm is the Van Nuys post office. I know I have about a 20 minute drive across the valley to get there. I make it with 10 minutes to spare. My family will get their gifts in time for Mother's Day and Ricky and I say goodnight.

Since I'm now on the east side of the valley, I decide to do some shopping at the two-level Tar-jhay (Target) on Sepulveda Blvd. The clothing brand, Universal Thread, has v-neck T-shirt dresses for only $12.00. A deal. I'm fussy. I only buy v-neck tops. I had already purchased a few from stores on the west side of the valley. I wanted a few more in my size. These were not going to be out in public type dresses for me. I haven't worn a dress since 2001. For me, these T-shirt dresses were perfect to lounge around the house in. Comfy clothes, like pajamas. I don't believe I'd been in this particular store since I moved into my mobile home in December 2018.

This Target has a five story parking garage attached. If you drive up to the third level of the parking structure, you can walk straight into the second level of the store. This is what I used to do when I regularly shopped here. I park very close to the garage elevators and head into the store. I realize that what I'm searching for is on the ground floor. I take the escalator down and locate the Universal Thread section. I find two more T-shirt dresses in different colors. I'm pretty happy with getting two more dresses. I checkout and head for the parking garage.

I pass the parking elevators and can't find my car. I become discombobulated. I was pretty sure of where I parked, but now I start to doubt myself. It's past 7:30pm. I'm in a section of the garage where the lighting is not great. I'm standing in an empty parking spot, turning myself in different directions, still looking for my car. I convince myself I must have parked slightly away from the parking elevators. I take a step and next thing I know, I'm on the cement on my hands and knees and my left knee is screaming in pain. I try to get back up and can't.

A young couple that saw me fall comes rushing over to help me stand. Finally upright, I'm unsteady and shaking, my mind totally focused on my screaming knee. I try to take a step, putting bending weight on my left knee and instantly know my knee is fucked because I cannot bear the new onset of shooting pain.

When I exited the store, I had forgotten I was on the ground level and my car was on the third level of the garage.

Watch this space. There's more story to come.
Sprocket aka Betsy

A PERSONAL STORY
My Trials & Tribulations detailing my cancer journey.
I was recently diagnosed with metastatic urothelial carcinoma of the retroperitoneal lymph nodes.

04/26/21 Day 1: Day 1 of chemo. History from 2018-2020. Blood in urine.

05/01/21 Day 2-5: Day 2-5 of chemo. Medical history. Blood Type Diet. Cystostopy and CT Urogram. CNA Job.

05/07/21 Day 6-10: Day 6-10 of chemo. New job in hospice. Urologist calls. Pet Scan. Oncology referral.

05/11/21 Day 11: Day 11 of chemo. First oncologist appointment. Biopsy and tentative diagnosis.

The previous post can be found HERE.

Catching Up
Two years ago today I got the news that I had metastatic urothelial cancer, found in the retroperitoneal lymph nodes of my pelvis and abdomen. I was told that my cancer was called "bladder cancer" and if caught early, it can be cured, but my cancer was not caught early.

I didn't know it at the time, but the oncologist I had was fucking lousy at communicating what the truth was. I asked her what stage my cancer was. She hedged, telling me, "...between stage three and four." She never outright explained or specifically said to me that metastatic urothelial carcinoma, bladder cancer,  that had spread to my lymph nodes, was terminal cancer. Even though I worked with hospice patients, I did not know that.

She also was lousy with getting my temporary state disability started. It took her over six weeks to get one of her nurse practitioners to fill out the paperwork, and even then they forked-up information on it and I had to correct it before submitting it myself.

At the time, my employer really, really liked me, and my department head gave me a gift. They would put me on a company "general leave of absence" for six months, even though I had not been with the company for a year. This was huge. That would keep me on the company books and also continue benefits that I had signed up for, I just had to pay for them fully.  To get that company leave, all the oncologist had to do was fill out the paperwork that I would be evaluated in six months to return to work. That's all she had to do for me, and she even fucked that up.  She didn't complete the paperwork by the company deadline so they initially denied it. I then had to appeal while she got her act together to finish the paperwork.

When I went into the office to pick up the paperwork to meet the new deadline, I received the pages back and started reading them. She wrote to my company that I was "Stage IV cancer. Patient is terminal." I was in shock. Tears started running down my face in that tiny waiting room. That's how I learned that my cancer was terminal. That was in May 2021.  

My friend went with me for my next appointment with her, and I pointed out to her the cover letter she ignored and the mistake she made. She was very embarrassed and apologized a lot. She said she would write whatever I needed. I did get my company benefits extended for six months, but it was like pulling teeth. I started telling my friends and family that Quasimodo would be a better oncologist than this woman. There were several other embarrassing mistakes she made, but what I mentioned here were the most egregious. I knew I had to try to find another oncologist, someone more on the cutting edge. Adding to my discomfort was the tiny cramped treatment room with patients so close together. I was also really put off by the unprofessional behavior of the treatment room nurse who hooked up my IV treatments. I was more professional treating hospice patients that this IV nurse.

Searching For A New Oncologist
I told the oncologist and my family physician that I wanted a second opinion from a specialist at a hospital like UCLA. My insurance finally approved that. I had to get my entire medical file copied and transferred to the doctor I saw because I knew it would takes months for this oncology office to get that together. I have to say, that I felt more warmth and a caring attitude from that urologist-oncologist specialist at UCLA than any doctor I had ever met in my life. The last thing he said to me was, "We're going to take care of you." I thought I had finally found a doctor with their eye on the ball in treating me.

But it was not to be. My Medicare Advantage plan approved the consultation but since his treatment plan was the same as what I was receiving now, the insurance would not approve transferring my case to an out-of-network doctor, for treatment that could be provided at a lower cost, in network. There was no getting around that.

I went back to my family doctor to get me a referral to another oncologist within my network, someone younger, who knew how to use a laptop to take notes. A doctor who knew which patient room she was walking into. My family doctor told me about a woman oncologist she met and she really thought I would be a good fit with this new doctor. She was right. The professionalism of this new oncology office and the old one was like night and day. I was so grateful to be with a more professionally run oncology network.

As a side note, where I left off 19 months ago, I did crack my patella with that fall in the Target parking garage. I had to wear a removable leg brace for about five weeks but it healed in about 6-7 weeks.

10 Rounds of Chemo
In 2021, I went through a total of 10 rounds of chemo. My new oncology office also was a big believer in supporting the patient, first, find out how to pay for it later. They got me DNA testing that the prior oncologist told me, "...insurance won't pay for that."  And they had better tools for supporting the patient. When my hemoglobin dropped low, they got me approved for injections of Procrit. Procrit helps bring up your red blood cells and hemoglobin.

At the old oncologist office, I had four rounds of Cisplatin and Gemcitabine. Cisplatin is a very toxic chemo drug and my kidneys took a bit hit. My one good kidney and my atrophied left kidney were not filtering out the toxins in my blood and tissues very well. This is one of the known side effects of Cisplatin. (Even today, my kidney function is still outside the normal range.) For my fifth round, I just had Gemcitabine. By the time I was with my new oncologist I was switched to a less toxic, and less ideal chemo drug called Carboplatin with Gemcitabine. However, Carboplatin is not the ideal drug for my cancer.

My 10th and last round of chemo was on December 21, 2021. A week after that, my hemoglobin crashed and I had to have a blood transfusion in the ER. The chemo was keeping my cancer at bay. It did shrink some of the lymph nodes, but it did not get rid of it all together.

First time Finding Cancer Cells in my Bladder
In June of 2021, for the first time ever, my urologist found cancer cells in my bladder through a special bladder wash called a "FISH wash." A follow-up cystoscopy in early December, he found a small spot, maybe an inch at most across that he thought might be cancer. He said it needed to be biopsied and cauterized. At the time, he also said to me, "Why don't you get the surgery to remove your bladder, they build a new bladder our of your small intestines also take out the lymph nodes." This was the first time he suggested this to me and I didn't know that was even possible. I told him, get me the referral. I had the biopsy on the bladder spot and the cauterization in late January, 2022. The biopsy came back positive for cancer.

A New Companion
I had been wanting to get a new kitty for a long time. My last kitties died in late 2016 and with my ex going through a heart bypass, there was just too much going on. Then my ex started to go downhill mentally, the house became an episode of extreme hoarding and I couldn't see bringing an animal into that situation. Then the decision to divorce, try to find a new place to live and heal. I had to go to to school, get a job and try to get settled into a life. Then my cancer diagnosis happens. After I went on disability, I thought about it often but the US was in the middle of a pandemic. Rescue organizations were requiring ridiculous questionnaires to be filled out, requiring video of your home space before they would even consider you. I finally signed up for this notification service, that let me know when new kitties became available at rescues, as well as LA City and County shelters. Jun 28, a new kitty popped up as being available.

From his one photo, I thought he might turn out to be a real handsome guy. I called about him. He would be available July 1st. I made an appointment to see him July 1 where he was located, an LA City shelter down past Torrance, CA. That was a long drive for me, well over an hour. I brought my carrier, kitten food, toys and water. I got there and I learn they don't let you into the facility. Someone brings the cat out in a carrier, and you don't get to see him close up, but from the other side of a steel fencing. I barely had a look at him. I didn't get to hold him, just see him in a carrier through this steel grating. I took a chance and said yes. They thought he was 3 or 4 months old. He had been dropped off at the shelter on June 29. They had no history on him. He had his surgery to be fixed June 30th and now I was adopting this handsome, medium hair tri-colored kitty on a hunch.

He cried most of the way home, but it was clear he had been around other kitties and human socialized. He was not feral or wild. I eventually named him Butter Biscuit. First photo of the Butter Biscuit is when I brought him home and second photo, he is almost 2 years old. He's been a wonderful companion on this journey. 

Treatment in 2022
My body had maxed out on chemo. My new oncologist felt it was time to try a different drug, immunotherapy, one of the new check-point inhibitor drugs. These drugs are quite expensive -twelve to fourteen thousand an infusion- and I could never afford the co-pay. Luckily, Keytruda had a patient assistance program that accepted as payment what my Medicare Advantage Plan would pay. I started on Keytruda in late January. (From the chemo, I have permanent chemo induced anemia. I have plenty of iron in my body, yet my bone marrow can't access it to produce more red blood cells. I have permanent, decreased kidney function, that my oncologist says is my new normal. I have permanent neuropathy in my feet.)

In March 2022 I had my first consult with the urologist surgeon. This was now my urologist. They thought my case was unique and that I might be a candidate for surgery.  They wanted to see me in another three months. At first, it appeared the Keytruda was working. I had a check-up scan in June that showed some of the lymph nodes as stable and others shrinking. 

September Scan - Not Great News
My next scan was September 9. The scan showed that the smaller lymph nodes were stable, but two of the larger, "target" lymph nodes appeared to have grown a couple millimeters. The urologist-surgeon suggested getting a new biopsy. I didn't see how they were going to get a biopsy of the lymph nodes that were right beside my descending aorta in my abdomen. He said he would submit it to the tumor board for an opinion. The other news was, the scan discovered a small blood clot in my inferior vena cava. That is the large vein that descends the heart and goes down through your abdomen to your legs and beyond, bringing the blood back to the heart. My oncologist said I now had to go on a blood thinner. For this type of blood clot, it's location so close to the heart, they treat this with drugs. People who get blood clots in their legs, they can use a sort of rotor-rooter technique to unblock the veins in the legs. You cannot do that with a blood clot in the thick vein so close to the heart. I was on a blood thinner I had to take twice a day. And my oncologist said I needed to be monitored more often so I was to get my next scan in two months.

My next scan happened November 29, 2022, a little later than I'd hoped. I got the report a week later, even before I saw my oncologist. The blood clot in my inferior vena cava had grown. The blood thinner had not helped. The bigger bad news was, several of the lymph nodes had grown significantly, one lymph node had grown almost two centimeters, others over a centimeter. When I saw my oncologist December 7th she said that cancer, by its very nature is a coagulating disease, so my disease was progressing. I would have to go on a stronger blood thinner. My choices were either Lovenox or Coumadin. The dosage on Coumadin is hard to get right in some people, so it requires a blood draw weekly. Lovenox is an injection that I would be taught to give myself once a day. I chose the Lovenox, to avoid a weekly blood draw.

My oncologist also mentioned to me, that it would be good to have another biopsy of one of the growing lymph nodes that the urologist-surgeon submitted. My insurance approved the procedure, but it could not be done at USC. It had to be done at a hospital in network.

My oncologist said the Keytruda was no longer keeping the lymph nodes from growing. I needed to go on a new drug. My options were Padcev or to go back on chemo. I did not make a decision that day. Padcev is very toxic. My hair could finally fall out, more neuropathy in my body and I could become hyperglycemic, high blood sugar.My oncologist said the chemo did keep the lymph nodes from growing. The reason we stopped was your body couldn't take any more of it at that time. My oncologist said the Keytruda appears to be keeping your cancer from spreading to other organs. This type of cancer can quickly change, and break out to other organs very fast. So I got another dose of Keytruda that day. 

Another Health Issue Surfaces
The next day, December 8, I started to get what felt like a sinus infection. I took a naturopathic remedy that helped a lot. I saw the urologist surgeon on Tuesday, December 13. I updated the surgeon with the difficulties getting the biopsy scheduled. Looking at my scans, and the enlarged lymph nodes, the surgeon said this took the possibility of surgery off the table, for now. The surgeon also told me that he recommends that I go on the Padcev first, before going back to chemo. He still wanted to see me in about three months, just to see how I was doing, before releasing me back to a regular urologist.

The next day, Wednesday, I woke up in terrible pain in my chest and back. I thought I had slept wrong. And I was coughing. Even taking one and a half tablets of Tramadol didn't touch the pain. The following day, I was still in the same amount of pain. I was able to get a teleconference with my family doctor's office on Thursday. They arranged a COVID test and wanted me to get a chest x-ray. The COVID test came back negative. The chest x-ray I was able to get on Friday, but not in time for my family doctor to review the report. I had to wait until Monday, December 19.

The x-ray report said I had congestion in the middle lobe of my right lung. I was diagnosed with pneumonia. Little did I know then how much the pneumonia would delay everything.

I got started on two different antibiotics that day. One I would take for five days, the other for seven days. The pain in my chest though, didn't immediately disappear. It moved around to different parts of my chest. I couldn't lie flat in bed or on my side. My sofa became my bed for a long time. And my coughing was non-stop. And that amount of coughing is physically demanding, it's like heavy exercise.  I saw my family doctor December 23. She listened to my chest, my heart, did a bunch of other tests and said my lungs sounded fine. My heart was fine. And my pain in inhalation was still there, but not as bad. It would just take time to clear my lungs.  I was supposed to see my oncologist December 30, but I woke up that day in extreme pain again. My right side ribs hurt every time I moved and my low back was on fire right below my floating rib on the right side. I cancelled my oncology appointment. No way I could go. 

I got another teleconference with my family doctor's office. Another x-ray was ordered to rule out new infection. However, the x-ray report came back with mixed messages. This time it said I had infection in the lower right lobe, but the overall report said there was no change between the two x-rays. They wanted to put me on more antibiotics immediately. I had to press the tele-doctor to speak to the radiologist to clarify what he meant.  Fortunately, the tele-doctor did speak to the radiologist that evening and got back to me. The x-rays were the same, however, both x-rays showed I had pneumonia in the lower lobes of both lungs. So much for the consistency in report documentation.

After a few days, I was able to figure out what was causing the pain in my back and right side. I was coughing so much and so hard that I sprained the intercostal muscles that span from rib to rib as well as the quadratus lumborum muscle in my low back. My body pain was musculature from strained muscles. It was not because of infection. I saw my family doctor again January 4th, She listened to my lungs again, listened to my heart, checked me for swelling in my legs. All was good. She again told me that it might take a "long time" for my lungs to clear.

 Two Years Later, Where I am Today: Hopeful
Today, my energy level is not what it used to be. I'm still coughing a lot, but at least my body has adjusted. I don't have pain coughing, it's just physically exhausting. The pneumonia set me back worse than chemotherapy ever did. I'm still waiting for approval for the new drug, Padcev. I'm still trying to get that new biopsy scheduled. 

The good news is, I can still manage to take care of myself. I don't need help showering or getting dressed. I can go shopping, just not for long periods. I can do a small amount of gardening and fix my meals. So that's the positive two years later. And I'm hopeful about this new drug. There have been some people with my type of cancer, Stage IV bladder cancer, who went into remission on Padcev and are still in remission almost 2 years later. So I'm hopeful for that.  And, once my lungs clear, (I'm hopeful that will be soon) there is a second degree murder case that will be tried at a courthouse relatively close to my home, not downtown Los Angeles. It would be very easy for me to get to this courthouse and possibly cover the case. Oh how I would love to be in court and cover a trial again! But my lungs have to heal. I cannot be in a court room coughing during a hearing or trial. The the judge would throw me out.

The case is not a national level case, but it has been covered locally. A very tragic case for all involved.  The accused is a socialite, Rebecca Grossman. You can read about it HERE. But most of all, I'm so happy to finally have a companion again.

Note: I'm late getting this up. I had my cancer treatment today. I've received three doses of PADCEV so far.  2/24/23 9:00pm

This entry was first published on February 24, 2016. Republished on the anniversary of Sherri's death. Sherri was murdered 37 years ago today. Sprocket.

 
The prior post can be found HERE. 

When I last left off, I still had congestion in my lungs. I was getting better, but it was a slow recovery.

PADCEV - Cycle 1, February
The following week I started on the new drug PADCEV. The Padcev website states it is not chemotherapy, but my oncologist calls it chemotherapy. I've seen other webpages that call it an immunotherapy drug. This drug was approved for my type of cancer in December 2019, so not that long ago.  Padcev is given via infusion once a week for three weeks then one week off. One month of treatment costs just under $40,000. Fortunately, this drug is covered by my insurance. All I had to pay was my annual co-pay in full and the insurance picked up the rest. There are big side effects with this drug. You can go into hyperglycemia, lose your hair, get skin rashes, anemia (I already have that) and your vitals have to be monitored. In the original studies, I believe at least one patient lost their life because their skin literally fell apart. The first month/cycle went well. My side effects were more neuropathy in my feet and occasional itching on my skin. As always, they monitored my vitals. My liver stats peaked real high but then came back down.

Cycle 2, March
The second month, Cycle 2, started March 10, my hair started to fall out big time. It would came out like a bucket load when I put a brush through my hair. Hair was falling when I was cooking and everywhere else. I finally had my friend Tara cut my hair short, just touching my shoulders. It kept falling out. What I have left today is very fine baby hair that is barely covering my scalp. It's sad for me because I've had long hair my entire life. Better to have no hair and still standing on two feet than anything else.

My lungs were getting better and I took on the task of trying to get that biopsy scheduled at the "in network" hospital. Getting the right lab tests they wanted and a copy of my last scan (11/29/22) to the hospital's radiology department was exasperating but I did accomplish it. The scan gets scheduled for 8 am March 15th. For pre-op, I have to be at the hospital at 6:30 am. I get an Uber reserved to pick me up at 5:45am to take me to the hospital. A friend will pick me up and take me home. It's all set. Tuesday, March 14, a woman from the radiology department called to tell me that my biopsy is cancelled. The radiologist assigned to the case looked and my films and was not willing to do the procedure. The woman told me his exact words were, "It's too risky."  I was totally defeated. The radiologists at USC felt they could do the biposy, they got approval for it. But this radiologist -where my insurance said I had to have it performed, "in network" said it was too risky for him. I didn't know what to do. I was at a loss.

March 29, I received a message from one of the doctors that works with my urologist surgeon. They were asking what happened with the biopsy. I called back and left a message for them. I told them the name of the radiologist at the in network hospital, the contact phone number and that the radiologist was unwilling to do the biopsy, and they said it was too risky. I did not hear back after that.

Other than the hair loss, occasional itching, anemia and neuropathy, my vitals were good through the second cycle. After two cycles of Padcev, I had a scan on March 30. The results were not available until my next oncology appointment, April 7.

Cycle 3, April
Sunday April 2nd, early morning around 6:30am, I noticed a tiny amount of blood on my self-catheter. As the day wore on, I started to see more blood in my urine.  It wasn't until after I had taken my evening Lovenox injection that I realized the bleeding was probably due to the blood thinner. I knew that nosebleeds could be a possible side effects of Lovenox but I didn't have all of them memorized. After reading through the side effects it did state that bleeding from the colon or bladder was possible. I did not feel any different. I did not feel weaker, or have any pain with the bleeding.

Monday morning I called the oncology office about the bleeding. They told me to stop the Lovenox immediately and try to get an appointment with the urologist-surgeon as soon as possible. Monday, the bleeding continued even more so than Sunday. Monday evening around 6pm would have been my next injection, but I did not take it. Early Tuesday morning, (2:30am) I could tell the bleeding was significantly reduced. it continued to improve throughout the day By 2:30pm there was no visible blood in my urine.

When I saw my oncologist on Friday, April 7 to start Cycle 3, she indicated my labs were pretty good. My creatinine (kidney function) was the lowest it had ever been since chemo at 1.11. I updated her on my struggles trying to call USC urology on Monday and Wednesday. The urologist-surgeon and most of his staff were out of Los Angeles all that week. They also said they couldn't even book an appointment until they obtained information from the team that the appointment had been approved by my insurance.  My oncologist suggested I reach out to my prior urologist (in network) to see if he could possibly fit me in to do a cystoscopy. Several phone calls and days later, my old urologist's office was able to squeeze me in for an update appointment on April 24. That's the earliest I could get in to see him. The cystoscopy would have to come later, after I had an update appointment with him to tell him what had been going on over the past 14 months since I had seen him.

The news from the scan was good. The three target (measurable) lymph nodes appeared to have shrunk a bit. One appeared to have increased slightly. My oncologist said  that "could be" attributed to how the CT scan sliced the image. Here are the new sizes and prior for the three lymph nodes.

Measurable Disease
1. Left supraclavicular adenopathy: 1.4 x 1.4 cm,  PRIOR: 1.5 x 1.3 cm
2. Left para-aortic retroperitoneal adenopathy: 1.5 x 1.0 cm, PRIOR: 2.0 x 1.6 cm
3. Right external iliac adenopathy: 3.1 x 2.1 cm, PRIOR: 2.7 x 2.1 cm

Non-measurable Disease
1. Extensive scattered retroperitoneal adenopathy, slightly smaller and improved in the interim.
2. Mild multifocal bilateral iliac chain adenopathy, also smaller and improved in the interim.

New Disease:
None

No new disease was fantastic news. I'm still holding the disease from spreading to other organs. Metastatic bladder cancer can, at any time, break out and spread to other organs very fast.

In the measurable disease, the #2 lymph node is the one very close to my descending aorta. This one has shrunk the most. #3 is the lymph node they went after with my first biopsy in January 2021.

My oncologist said the increase in lymph node #3 "could be" due to how the CT scan sliced the image. I won't know for certain on that until I get to meet with the urologist surgeon one last time. He knows how to read CT scans and could tell me if that was true or not. With this news, I may still be a candidate down the road for bladder removal surgery and neo-bladder reconstruction. That's my hope. For that to happen, the cancer in my lymph nodes has to shrink to disappear. Then I'm a candidate for surgery.

There was lots of inflammation in my lungs. They found inflammation throughout my lungs that the radiologist thought was the "beginning" of pneumonia. Actually, what he was seeing is the remnants of my bad case of pneumonia.

The blood clot in my inferior vena cava. The radiologist report said: "Large IVC thrombosis, stable." My oncologist said that as this clot material forms, from cancer being a coagulating disease, there is actually only so much that the body can breakdown and reabsorb with a clot. She said the reason the thrombosis is stable is because my cancer disease has improved/receded. The fact that it was stable is good news but it means that I still have to be on a maintenance dose of a blood thinner. So I'm back on the Eliquis 2.5 mg twice a day.

Friday April 14, I had my second dose in Cycle 3. I did not see my oncologist that day and went straight to the infusion room.  When I got home I opened up my mailbox to a notice from my insurance company. They had approved for me to get my biopsy at USC!  I was over the moon! My urologist surgeon at USC Keck Medicine had resubmitted the request to get the biopsy performed at USC.

On Monday, April 17, I called USC Radiology to schedule. They found the insurance approval in their records but said they did not have the direct order from the ordering doctor yet. They could not schedule it. The very next day, I got a call from a nurse from Raidology telling me my biopsy was scheduled for 8 am May 1st.  Radiology scheduling had not called me to tell me that. She was only calling to ask about the blood thinner and that I needed to stop it 48 hours before the procedure. I gave her my oncologist's office number so that they could get the approval from her that this would be okay for me.

The following day, Wednesday, I get an email notice from Keck Medicine that a Biopsy had been scheduled for APRIL 26, at 1pm and the one for May 1 was also in my chart. I called Radiology. They said that they scheduled the May appointment in error at Keck Hospital. Insurance approved the procedure at the Kenneth Norris Cancer Hospital, that had an earlier day/time. Norris is practically next door. They're both in the same USC complex. So now I have to arrange rides on a different day and time. 

Wednesday is my day to get my every 2 weeks blood draw for monitoring my Padcev treatment. I was on my way to the appointment when a doctor that works with my urologist-surgeon called, telling me I needed labs. I told him the Labcorp location I was going to in about ten minutes. Through the electronic portals, he sent two more tests I needed before I could get the biopsy. When I got to the lab, I told the staff to also send my regular CBC and chem panel my oncologist ordered to the USC doctor who added the two other tests. So that was quick and painless. Radiology would get a copy of all my tests directly from the Lab and I wouldn't have to send anyone a copy.

Friday April 21, I had my third Padcev dose in Cycle 3. Before the infusion, my oncologist asked how I was feeling and went over my labs with me. I told her I feel that my neuropathy in my feet is a bit worse, my hair continues to fall out and I feel tired all the time. But my labs look good. My creatinine came up a bit from 1.11 to 1.31. This is something my kidneys have done for a long time now. It bounces back and forth from 1.1 or 1.2 up to 1.3 or 1.4 then comes back down again. It hasn't been in the normal range (1.0 or less) ever since I had chemo. RBC's and WBC's look good and platelets are really good. My Hemoglobin came up to 11.2, which is real good and my liver enzymes are back in the normal range. I'm to stop the Eliquis on Monday morning and start it up again on Thursday morning, the day after the biopsy.

Here I am at my last infusion appointment on April 21.  So far, one day, one week at a time, I'm doing okay.

 

The prior post can be found HERE.

Hello friends. Lots to update you on. When I last left off, I was going to see my old urologist on April 24, for an update with him about scheduling a cystoscopy and my second biopsy was scheduled with USC for April 26 at 1pm.

Biopsy & Cystoscopy

Surprise surprise, on April 24, my old urologist performed a cystoscopy. With his scheduler, they told me I needed an update consult first, before I could get the cystoscopy. When I arrived, I did not realize they were going to perform a cystoscopy that day. But that was great. He went in, looked around. He told me that my bladder looks about the same as when he first saw me back in August 2020. He said he did see some low grade, "red velvet" looking material that is cancer. This is not "high grade" metastatic cancer. This was different than what he found back in December 2021 and performed a cauterization in the hospital in January 2022. He said he could do the same thing again for this material. He also did a bladder wash. The results of the bladder wash did not show evidence of  high-grade, metastatic cancer. As I write this, I still don't know if my older urologist will be scheduling a procedure to cauterize this tissue.

April 26, 2023

At 10am I took an Uber to the USC campus near downtown Los Angeles where the Kenneth Norris Cancer Hospital is located. My driver took the 118 to the 5. The LA County coroner's facility is right next door. How convenient. I'm reminded of all the testimony I've listened to over the years from criminalists employed by the coroner's office, as well as deputy coroners as well. The ride was just over 50 minutes. I arrived on time.

This was a nice, small hospital with great staff. After I was checked in and admitted, at 11:10am, a volunteer escorted me to the second floor radiology department. I waited for an RN to come get me. 

At 11:40 am, the RN called me back to ask a few questions. Last time I had solid food, last time I had something to drink, last restroom, etc. I let her know that as it got closer, I would need to self-cath. She asked if there were any pacemakers, medicine patches, allergies to anything, etc. Unfortunately, they don't have a bed for me yet so now I'm back in the waiting room area.

By 12:30pm I'm in my gown and the IV is in my arm. I'm all ready for the land of nod. I was under the impression that this was going to be a difficult procedure. The lymph node they were going to go after was very deep in my body and somewhat close to my descending aorta. The radiologist came by and I learn I'm getting twilight, not anesthesia. I also learned that my urologist-surgeon, after seeing my latest scans, decided to change course and instructed the radiologist to go after the largest lymph node in far right pelvis that is not retroperitoneal. This is the same lymph node that was tested in January 2021 when my Stage IV cancer was identified. 

It's now 2:30pm and I'm in recovery. I was never completely out. I snacked on cranberry juice, grapes and pineapple. I passed on a sandwich, since I don't eat bread. My current special diet is grain-free. I don't eat grain of any kind. During the procedure, I could hear and see what was going on. I could hear the snips of the device. I didn't feel anything. Radiologist was fantastic. Explained everything. They hold onto you for several hours after the procedure. They said I could be released around 4:30 pm. 

My girlfriend was not able to pick me up until much later in the evening so several days before, kinda last minute, I asked my neighbor -who runs a limo service- if he could do me a big favor. I asked if he or one of his drivers could pick me up from the hospital.  He said one of his drivers would pick me up from the hospital and there would be no charge. My limo picked me up, right on time and I was still feeling good. 

After 6pm, I was home and having dinner and still feeling good. It was an easy, fast procedure. When the radiologist first talked to me before the procedure, he explained everything. He was kind, patient and friendly. One of the things he said they do, is after they've collected samples, the device will still be in my body for a time. Before they take the device out, they have a pathologist look at the tissue they collected so far under a scope to determine if they collected enough "cells" for the biopsy. If not, he would take more samples. 

So during the biopsy, that happened. A pathologist looked at the material then the radiologist took the device out of my body. He then told me something interesting. He said they got enough material/cells with the three collections. But when the pathologist looked at the material, they said it didn't respond like tumor material. That the samples were like "rubbery". I think he said, "... like fibrous". I can't remember if the radiologist said it or if I asked the word fibrous. I'm thinking he said fibrous, but I did remember hearing that word.

From the radiologist's tone and demeanor, he stressed that this was PRELIMINARY. It was NOT PATHOLOGY TESTING. However, it sounded like this could be a very good thing and an explanation as to why this lymph node is not shrinking. The next thing would be waiting to hear from the urologist-sugreonwait to hear the results of the biopsy.

May 23, 2023
It took way longer than I expected to get the results of the biopsy. I did not hear from the urologist-surgeon or any of his assistants from USC for almost two weeks. I finally called and asked for an appointment. The first available appointment was a teleconference with the urologist-surgeon two weeks later.

I find out from the urologist-surgeon that the biopsy confirmed the preliminary tissue review. The biopsy did not show any evidence of metastatic disease. The tissue was, like the radiologist said during the procedure it was mostly "fibrous tissue". The report also indicated there was very little lymphatic material in the sample.  The urologist-surgeon admitted he was surprised by the result, but even so, it was good news. That combined with the good scan from March 30th, the urologist-surgeon said he was "very pleased" with the news. The urologist-surgeon also said this means I am back being potentially eligible for the bladder surgery. The urologist-surgeon also said that we needed new scans. I told the urologist-surgeon that my next scan would be 2.5 months from the last scan. It's scheduled for June 14.

Although this result is surprising news, we won't know until the next scan what is the state of the other two "target" lymph nodes are. The one nearest the aorta did shrink noticeably, but the other one near it did not shrink at all. The  non measurable lymph nodes scattered throughout my pelvis and right iliac space did show evidence of shrinking compared to the prior scan.

June 2, 2023
I started Cycle 5, Dose #1 on Padcev. Before the infusion, I went over with my oncologist my latest lab results from May 31st. All my labs look real good. My RBC's (Red Blood Cells) and Hemoglobin keep going up. They are in good ranges now. My Liver stats, Iron studies are all good. There are only two stats that are out of range, my Creatinine (which tells how well my kidneys are filtering my blood) and the RDW, (Red Cell Distribution Width) which is commonly used to help diagnose anemia. The other item of note is the visual appearance of my RBC's. The visual examination of my red blood cells showed Ovalocytes and Anisocytes were present. Some of my red blood cells are different sizes and some are egg shaped. There are several different causes, but for me it's because I'm on a powerful, toxic drug. My hair continues to fall out. It's not enough to cover my scalp now. My eyelashes are gone and I have a few scattered eyebrow hairs left.

With the Padcev, I don't technically have anemia, but I feel like I have anemia. I feel weak. I feel like I don't have any energy. I used to be able to spend four hours gardening but I can barely do two hours. And I don't have a lot of motivation to keep my body moving. I really have to push myself to get projects done. My neuropathy in my feet has gotten worse, but as of June 2, I told my oncologist I noticed a difference in how my hands felt and that it probably is the beginnings of neuropathy. When I spoke to the urologist-surgeon a week prior, he made a point to ask me if I had neuropathy in my hands.

While going over my labs, my oncologist asked if I used their patient portal. My oncologist indicated that when my labs come in, they are uploaded to my patient account. I replied that I rarely used the portal because of all my doctor's patient-portal accounts, (oncology, family physician, USC Keck Medicine), the oncology portal is the only one that does not allow the patient to upload documents.

My infusion went well. The nurses at this onology group are some of the best I've ever encountered. They are excellent at installing an IV with the least amount of discomfort. When I got home, I decided to go to the patient portal and read through everything that might be in my file. There were a few minor things that were inaccurate -that I was a social drinker- when I haven't had any alcohol in over 15 years or more. There was something that piqued my interest and sent me on a search for discovery that told me something that I never knew.

Under diagnosis, it stated "Bladder Cancer (Genitourinary) - Pathologic Stage IVA.

A note here. When I was with my first oncologist, she never told me to my face that I was Stage IVA.  I found out that I was Stage IV and "terminal" when I read what she wrote in documents to my employer on documents that were trying to save my benefits for six months while I went on disability. She never talked to me about it with me. She never told me there was anything beyond Stage IV.

Stage IVA. 

In all my research over two years ago, in trying to understand my Stage IV cancer,  (found in my lymph nodes with no originating tumor ever identified), my big concern was, what were my odds of survival at five years. I had never read anything about Stage IV "A". I never found or read that there were three stages of Stage IV in bladder cancer: A, B and C. All I ever read back then was Stage IV bladder cancer had a 5% survival rate at five years. But now, after reading and researching Stage IVA, I find some remarkable news. Stage IVB and IVC are bladder cancers that have spread outside the bladder to tissues beyond the pelvis and/or abdomen. Those cancers have a survival rate now of 8% at five years. But Stage IVA describes cancer that has spread to other tissues, like lymph nodes, in the pelvis and abdomen. That describes my cancer. So far, my cancer has stayed right where it was found. Over the past two years, it has not spread beyond that location. And the good news, depending on which web site you read, Stage IVA bladder cancer has a five year survival rate of 36-39%.

All this time, I always though I was looking down a railroad tunnel of a difficult to obtain goal. My odds of getting to five years, still less that 50-50 odds but much better than what I though I had. 

Today 

Within days of the urologist-surgeon asking about neuropathy in my hands I started to feel something different in my hands. I knew it was the beginning of neuropathy. So far, it's just been a feeling of tightness that has gotten more noticeable over the last week. I started using my wax machine to heat up my hands. It doesn't cure it, just makes my hands feel better for a while. This morning, the tightness is more prominent. It has not limited being able to take care of myself. I can shower, dress, wash dishes, etc., but my hands don't feel right. They don't feel good. I do know from reading all the side effects of Padcev on the Padcev website, that some patients had to stop the medication for a time or go on a reduced dose. I'll be discussing possibility of either going on a weaker dose or stopping for a cycle or two to see if my hands improve. I don't want to be left with something permanent, like my feet.

Tomorrow I get my next labs, Wednesday I get my scan and Friday is Cycle 5, Dose #3. I'll go through with this dose and hope that I get the results of my next scan in about a week when decisions can be made.

Me, Cycle 5, Dose #2, June 9, 2023.

More to come...

 June 26, 2023

It has been three-and-a-half years since I've stepped inside a courtroom. The original reason I stepped away from covering high-profile murder trials was economical. I was newly divorced and I had to find a way to support myself after being a semi-retired housewife for 17 years.

For quite some time now, I've been wanting to get back inside a courtroom, but my cancer treatments have kept me close to home. I've missed listening to lawyers argue nuanced points of law, hearing witnesses testify, and observing the jury as well as who shows up to sit in the courtroom gallery. I do love the law. Everything about it is interesting to me. Even though I could not attend, I kept track of the next pretrial and post trial hearings in two cases I covered extensively, the Baker/Sementilli case and Michael Gargiulo until he was sentenced.

Lately, I've been reading news reports and keeping up with a case that will be tried in a courthouse closer to where I live, the Van Nuys West Courthouse. This is the same courthouse where I attended much of the Robert Blake murder trial, long before I started T&T. The new case is the murder trial of Rebecca Grossman, a tragedy for all parties involved. Grossman is charged with two counts of second degree murder in the deaths of two children, Mark (11) and Jacob (8) Iskander. (I will say, that the only other child murder case I covered was one of the most emotionally draining cases I've ever experienced.) 

Grossman is alleged to have hit the Iskander boys with her Mercedes in a Westlake Village crosswalk and fleeing the scene. (From news reporting on the preliminary hearing, it is my understanding that Grossman's air-bag deployed and the Mercedes shut down because of that deployment.) Jury selection in Grossman's trial was originally slated to start July 5, 2023. However, at a June pre-trial hearing the trial date was moved to January 16, 2024. I really wanted to try to attend this trial.

I had promised my dear friend Alene who doesn't drive, that for a belated birthday gift, I would take her to the LA County Natural History Museum located just southwest of downtown Los Angeles. Alene loves history and we've gone to several museums together. Alene has been helping me with gardening projects as I've become physically weaker from my treatments. Since Monday is the day she usually has free, I thought I could combine the museum trip with a trip to the downtown criminal courthouse. I don't believe Alene has ever read T&T. She tells me she has never been inside a courtroom. I thought it might give her another new experience. She was game, so I started planning.

Since I am immune compromised, the new normal of my life is, I wear a mask the minute I step out of the house and I don't eat in restaurants. I told Alene to have a lunch packed for the cooler and we would probably eat in the car soon after we get to the museum.  I also did not know how long I might be able to walk around the museum so as a precaution, I packed a walker. I've had a walker ever since I tripped and fell in that Target parking lot cracking my left patella, soon after I started chemo, but I've never used it. Lately however, my energy level has started to tank from the drug I've been on since February. Most of my time the past six weeks has been reading and resting on the sofa with my kitty, Butter Biscuit, lying on my chest or legs.

I also gave Alene a quick course on what she could and could not do inside a courtroom. Since we were going to the 9th floor, a security floor, I told her that our phones would be put in a Yondr security bag, so she wouldn't be able to use her phone while on the 9th floor. 

Around 2018, the Los Angeles Superior Court transferred the control of the public's phone privileges on the 9th floor over to the Los Angeles County Sheriffs Dept. To be recognized as a journalist, with phone privileges on the 9th floor, you had to apply for a media pass with the LASD. LASD does not recognize independent journalists that are not affiliated with a mainstream outlet or have not been published by accredited media. So even though I have been recognized by the LA County Superior Ct as being a member of the media since January 2011, I am like every other member of the public with no phone privileges on the 9th floor.

The 9th Floor
We parked at the Catholic Church on Temple and walked the two blocks to the Clara Shortridge-Foltz Criminal Justice Center. We breezed through the first floor security and arrived on the 9th floor before 8am. Unlike the ground floor to get into the building, this security station does not open until 8am.

Already on the 9th floor off to the side of the security station was a large family group with a woman sitting on a walker that had a seat.  Alene and I lined up right behind the security scanner. There was one deputy sheriff already there getting things set up. However, I knew that it would not open until a second sheriff arrived and they ran their regular  tests on the security scanner. We waited. More people arrived on the 9th floor, including a media crew with a camera. I wondered which courtroom they got a judge to sign off on filming. From my experience, there are not a lot of Judges on the 9th floor that would allow cameras, but maybe things have changed. I thought I recognized a reporter but I wasn't sure. After the second sheriff arrived I motioned to the family with the chair assisted woman to go ahead of me. She shook her head but I insisted.

After we cleared security I turned right into the corridor and made a beeline to the bench that sits at the very end of the long hallway. I had been standing too long already. This bench is right beside Dept 101, Judge Coen's courtroom. Soon the media crew came down and I recognized Pat LaLama, currently with ABC. I listened to Pat talk to her crew for a bit before I said her name. "Pat LaLama, I don't think you recognize me." Pat squinted in my direction and replied that she didn't have her glasses on and added, "And besides, you're wearing a mask." I replied, "I'm Betsy Ross."  Pat was visibly surprised. "Betsy!" she exclaimed, "I'm so happy to see you!" She immediately introduced me to her ABC producer, Elissa Stohler, and said, "You've read Trials & Tribulations!" Elissa said something to the effect of, "Of course!" She was familiar with my prior trial reporting.

Then Pat proceeded to go more than a bit overboard in her praises of my trial coverage and implying that I was better than any other journalist who covers trials. Almost rolling my eyes I skeptically replied,  "Pat is too kind. I wouldn't go that far." I tell Pat about my Stage IV diagnosis. Pat asks which trial I'm here for. I tell her Sementilli. Her crew is also here for Sementilli.

About 8:20am, the first counsel to arrive on the 9th Floor is Michael Simmrin, Robert Baker's attorney. I believe I hear Pat ask Mr. Simmrin what the hearing is about. It appears Simmrin doesn't know why this pretrial hearing was called. About five minutes later, Monica Sementili's defense team arrives. I remember Leonard Levine and Blair Berk, but I don't recognize anyone else in their group.  Last to arrive on the 9th Floor is Deputy DA Beth Silverman and a new co-counsel, DDA Ryan Erlich. Beth did not recognize me in the hallway, but to me, over all these years, Beth hasn't aged a single day. She looked just as I last remembered her, sharply dressed with classic heels. From what I'm overhearing, Beth and her team don't know why this hearing was called either.

Inside Dept 101 8:27am 

I scan the courtroom. Pat LaLama's crew sets up their camera in the back right corner of the courtroom. Normally I would sit with the other media but I sit on the edge of the second row so it's easier for me to hear what's being said when the court goes on the record. I point out the court reporter and the Judge's court clerk to Alene and try to listen to conversations going on all around me. I'm not able to hear much. My latest infusion drug has been making my tinnitus worse. Alene tells me she's surprised at how small the courtroom is. TV shows make it look like all courtrooms are large rooms. Most courtrooms in the criminal courthouse have only four long bench rows for seats. (I can't wait until I take her to the largest civil courthouse in the nation, with most courtrooms having fold-down gallery seats only available for about 35-to 40 people.) Beth and Ryan are sitting in the first row chatting.  Pat makes the rounds of counsel and court staff, introducing her producer Eilssa to them. I hear Beth and Ryan discuss dogs with Pat and Elissa.  Levine, Berk and Simmrin enter the courtroom and Pat introduces Elissa to Sementilli's counsel.

8:30am
CBS 48 Hours Producer Greg Fisher enters the court room carrying a backpack. He heads directly over to the media crew and greets Pat LaLama. Greg didn't recognize me when he walked behind where I was sitting. I look over for a bit and he's deep in conversation. I get up from where I'm sitting  -which is a big mistake because I take my eyes off of the well of the court- and go over to say hello to Greg. I address him and tell him I don't think he recognizes me. It's not until I'm right in front of him when he replies, "Of course I do." I don't remember much of what we said, but I do remember him specifically asking, "What are you doing?" I replied that I was diagnosed with Stage IV cancer. It was like my reply didn't even register with him because he asked again, "What are you doing?" Was he asking me what I was doing for work? Did he think I was still working while undergoing treatment for Stage IV? I explain that after my divorce,  I went back to school and trained to be a Certified Nursing Assistant (CNA). He seemed surprised by my answer. I told him that this was not an out-of-left-field choice for me. Most people who followed my trial coverage don't know that for over 30 years, I have been a self-employed then semi-retired "bodyworker". I tell him it was nice to see him and headed back to sit with Alene. It's then I see DDA Beth Silverman coming out of the back chambers area behind the clerk's desk and realize I've missed some activity in the well of the court.

As a bodyworker, I trained with one of the top body modality teachers in the field, William "Dub" Leigh. Dub was one of two individuals in the world certified by both Ida Rolf and Moshe Feldenkrais. He later trained with Zen Master Tanouye Tenshin Rotaishi. After I passed the California State exam, I worked as a CNA in a respiratory hospital. I then got my additional HHA certification and switched to working in home-health hospice care. After a full year in this new career, I was diagnosed with Stage IV Urothelial Carcinoma, also known simply as "Bladder Cancer". If caught early, bladder cancer can be cured. Unfortunately, my cancer was not caught early.

With seeing Beth come out of the back area, I should never have taken my eyes off the well of the court. I see Beth either handing over a disc or receiving a disc. Pat LaLama was briefly speaking to Judge Coen in the well of the court and I believe at this point it's when she tells her crew something to the effect of, they're not going to bring the defendants out, they're just going to continue. I'm disappointed. I was hoping Alene could see what happens when defendants are brought into court. I don't see Sementilli's defense counsel anywhere. My best guess is they are back in the custody area, advising their client. I make sure to point out to Alene who the Judge is when he is out of his robes chatting with his staff and counsel.

8:42am  Judge Coen Takes the Bench

Michael Simmrin is at the defense table. Beth and Ryan are at the prosecution table. Everyone is waiting on Levine and Berk. Two deputy sheriff's enter and check in with the two deputy bailiffs already in the courtroom. Right after, they turn around and leave. It appears they won't be needed in the courtroom since the defendants will not be brought out. Judge Coen chats with his bailiff.

Sementilli's counsel enter the courtroom from the custody area and Judge Coen quickly goes on the record. He states that the defendants were not brought out into the courtroom. The court states counsel has received new discovery. The next hearing date is set for July 14 and it's agreeable to all counsel.

Judge Coen continues with the matter that brought everyone into court. From what the court is saying and from what I've overheard, apparently there was a motion to sever or intention of a motion to sever by, I'm guessing, Sementilli's counsel, with no ruling today except the continuance. Before he leaves the bench, Judge Coen mentions a case on the record "... that just came down from the Superior Court ... this past Friday." I got the case number, 22-196 in my notes, but Judge Coen spoke so quickly I didn't catch the case name and my handwriting is garbled. However, I did find the ruling on SAMIA, AKA SAMIC v. UNITED STATES.

And that's it. It's over quite quickly. Judge Coen is off the bench. Afterwards, Judge Coen speaks to Simmrin at his clerks desk and most everyone else is packing up, headed for the exit.

Outside in the hallway, Alene and I stand back, just listening to DDA Silverman speaking to her clerking staff about researching this case and the points of law it covers. From reading the SCOTUS ruling later, it's a bit complicated regarding spoken statements by a co-defendant brought in at trial through other witnesses. However, my understanding is, in simple terms, SCOTUS ruled a co-defendant's sixth amendment rights are not violated at trial, by evidence brought through a government witness without naming the defendant who made them, as long as the jury receives a limiting instruction from the court on which defendant they can use that specific testimony against. Read the ruling and let me know if you have a better explanation on how the court ruled.

Beth is talking about a prior case (Tran? Traun? Trank?), that up until this latest SCOTUS ruling, the prosecution relied upon regarding specific evidence that could be brought in at trial against co-defendants. That case only covered non-verbal evidence of a co-defendant. SAMIA went even further and covered verbal statements. While listening to all this in the hallway, other counsel from the District Attorney's office are leaving hearings in courtrooms directly across the hall. Beth has a lengthy discussion with one Deputy DA who many years ago clerked with her before they were hired by the DA's office as a Deputy DA.

Afterwards Pat LaLama asks a question and Silverman replies, "... something is possibly coming out from the DA's media relations office..." Silverman would not be specific in this public arena, only to say that most likely, something is coming out from the press office in a week or so. DDA Ryan Erlich then explains to Pat LaLama what happened in court. Apparently, there was going to be a motion to sever, but the SCOTUS ruling pretty much shoots down any motion Sementilli's counsel was trying to bring. Pat then asks a question as to whether or not the DA's office has identified the unnamed third co-conspirator who was seen on a neighbor's surveillance video approaching the house with alleged defendant, Robert Baker. DDA Sliverman responds there are "several" (meaning, more than this single unnamed co-conspirator) who the DA's office believes knew about the murder plot and may have been involved in the planning. The DA's office doesn't have as of yet, enough evidence to bring charges.

After some other reporters ask Silverman and Erlich some questions, Beth looks towards Arlene and myself, having seen me writing as fast as I can on my notepad and asks, "Are you ladies journalists?" I reply, "Beth, I don't think you recognize me. I'm Betsy Ross." Beth replies something to the effect that she does recognize me. She adds, "Your hair's white!" In my mind, I'm thinking, what hair? There isn't enough to even cover my scalp and I have no eyelashes or eyebrows, but, I reply, "Stage IV cancer." Beth's reaction is immediate and understanding. She knows exactly what I'm talking about. She mentions a close friend and a law clerk having gone through the same thing.

Before they walk away, I introduce myself to Ryan and ask him for the correct spelling of his last name, which he politely gives. Then we head for the elevators.

Down in the lobby, I point out to Alene the several large historical displays honoring Clara Shortridge-Foltz, the first woman attorney accepted to the bar on the West Coast and who first proposed the idea of the public defender.

Heading back to the parking lot, I was winded walking up the two-block incline on Temple Street to where we parked. I was grateful I was able to stand as long as I did and didn't need to lean on Alene for support. When we made our first crossing on Temple, the ABC camera crew was on the corner setting up. It's my assumption they were trying to get camera shots of the defense counsel leaving the courthouse. I greeted Elissa and we exchanged business cards. I wanted to be sure I got the correct spelling of her name for my reporting. 

On our walk, Alene agreed that no one recognized me. Much later, my close girlfriends admonished me about this. They reminded me that I do look vastly different than three years ago, when I had long dark hair past my waist. It's true. I look in the mirror and I don't recognize myself.

Today was a test to see how well I held up for a pretrial hearing. Not bad, overall, but I don't know if I will have the energy to cover the potentially month-long trial of Rebecca Grossman in Van Nuys. There would be much more walking than today if I took public transportation to save on parking costs. At this point, it's too far ahead in time to know.

 July 7, 2023

 Fabio Sementilli
Source: Hair Talk

Two days ago, I had been given a courtesy heads-up that today, Robert Louis Baker would be making an open plea to all charges in the death Fabio Sementilli. I was unable to go to the plea hearing because I had an oncology appointment this morning. My health has to come first. 

Baker pled "no contest" to first degree murder and three enhancements: 1)conspiracy to commit murder; 2)murder for financial gain; 3)using a knife. After family impact statements were made, Baker was immediately sentenced to life without the possibility of parole by Judge Coen. 

Sources tell me the prosecutors, DDA's Beth Silverman and Ryan Erlich made no statement in court today. It is my understanding that by pleading "no contest" to the court, Baker has made no agreement with the DA's office to assist them in the prosecution of any other co-conspirators.

Monica Sementilli is now facing first degree murder charges alone. Her trial is slated to start in September of this year. It remains to be seen if Baker will testify in Sementilli's upcoming trial.

Other Media Reports
ABC News

LA Times

Daily News (via City News Service)

The previous post can be found HERE.
July 14, 2023 

Last week, Robert Louis Baker pled "no contest" to all charges and was sentenced by Judge Ronald Coen to life without parole.

There was a pretrial hearing in the Monica Sementilli case on Friday. I did not attend this hearing but I was able to get an update on what happened in Department 101 on the 9th floor.

Because of Baker's plea, defense tells the court they want a continuance in the case to "re-strategize". The court agreed that this new development creates a complexity for the defense. There was a strong objection from the prosecution team.

The reality is, Judge Coen's calendar is booked solid. Judge Coen offered the parties October 2nd this year or April 2024. There was a tentative agreement to the October 2nd date. The next pretrial hearing is slated for August 1st. At that hearing, the defense will inform the court about their "readiness" for trial. If the defense still feels they are not ready, then the trial date will move to April. The only other possibility for an earlier date is if one of Judge Coen's other cases falls and gets pushed forward.

 The previous post can be found HERE.

There was a pretrial hearing in Dept. 101, Judge Ronald Coen's courtroom for Monica Sementilli. I did not attend but I was able to obtain an update from a reporter who attended the proceedings. 

The case will be delayed until April of 2024. The only possibility of the trial happening sooner is if another case on Judge Coen's calendar is pushed forward in time.  Then the Sementilli case could take it's place.

It appears Monica's defense team informed Judge Coen that Monica's convicted, former co-defendant, Robert Louis Baker will testify at her trial that she had nothing to do with the murder.

Monica Sementilli is charged with first degree murder in the stabbing death of her husband, Fabio Sementilli.

More to come...

 Note: I originally posted this in 2016. Remembering Lauren on her birthday. She would have been 27 years old today. Sprocket

 Full T&T Lazarus archive

 

Sherri at home, December 1985.

 

Tomorrow, at 8:30 am, Stephanie Lazarus will have her first parole hearing for the murder of Sherri Rae Rasmussen, on February 24, 1986. The murder occurred three months after Sherri married the love of her life, John Ruetten. 

 

 Socialite Rebecca Grossman's life changed forever on the evening of September 29, 2020. Prosecutors allege Grossman's Mercedes, driving at a high rate of speed, struck and killed two young boys who were in a crosswalk on Triunfo Canyon Road in Westlake Village, Ca. It was a visual horror for the Isklander family. Jacob, 8, and Mark, 11, Isklander were in the crosswalk with their mother, Nancy when she witnessed her children struck by the speeding vehicle. One child died at the scene; the other died at the hospital.

A Brief History
Sherri Rae Rasmussen was murdered in her home on February 24, 1986, one day after being married to John Ruetten for only three months. Her murder remained unsolved for over 23 years.

Newspaper headlines shocked the nation on June 5, 2009, when LAPD Detective Stephanie Lazarus was arrested for Sherri's murder. 

Lazarus went on trial January 30, 2012 and was convicted of first degree murder on March 8, 2012. She was sentenced to 27 years to life a little over a month later on May 11, 2012. Lazarus was sentenced under the guidelines that were in effect at the time of the murder. During her sentencing, sources told me that Lazarus could be up for her first parole hearing in as little as 14-15 years.

While Lazarus was serving her sentence, the California legislature passed laws that impact what the Parole Board can consider when determining an inmate's eligibility for parole, commonly known as the youthful offender statute. Lazarus, who was 25 years old and 10 months at the time of the murder, benefited from this statute.

First Parole Hearing

In November 2023, after serving a little more than 14 years in prison, Lazarus qualified for her first parole hearing under the youthful offender statute. There were two parole board members at that hearing and Lazarus was recommended for parole. Then the decision went to the Governer, Gavin Newsom.

Many of Sheri's family and friends wrote to the Governor Newsom asking him to deny Lazarus parole. Most notably, LAPD Chief Michael Moore wrote a letter recommending Lazarus be denied parole. Here is the letter Chief Moore wrote on January 16, 2024:

Today
In early April this year, Governor Newsom referred the parole decision back to the Parole Board for a full "En Banc" review.  That full board review hearing is being held today in Sacramento. It is open to the public. You can find information about the hearing at THIS LINK.

Hello everyone!

Stephanie Lazarus
At Lazarus' most recent parole hearing, the board rescinded her parole release. There is a review again in 120 days. Hopefully, I'll have Matthew McGough's pool report notes posted in a few days

Health Update
I'm still alive. I'm still on two feet. I can do all my own "ADL's" = activities of daily living, but I HATE cooking for myself. My friend in my Mobile Home Park cooks for me,

I don't have my long hair anymore like my photo on my blog. I've lost a lot of weight from the last drug trial I was in. I weigh what I did when I was in my early 30's, I'm still dealing with Stage IV cancer. I finally have a bladder cancer specialist since October of last year ... took forever for my insurance to approve that ... 

I still drive myself to my cancer appointments at USC, Kenneth Norris Cancer hospital from the Northwest San Fernando Valley (Canoga Park). With our freeway system, it takes me at least 90 minutes on our freeways to get there.

I've currently signed up for a new phase I/II drug trial, for a drug that might help control my cancer. The study is trying to fit me into the schedule for my initial screening. 

Let's hope I get through the study, accepted and this drug helps me. 

Here is what I look like now. This is me on the right, with my friend who cooks for me.  September 25, at USC Kenneth Norris Cancer Hospital.