Tuesday, May 11, 2021

Day 11: My Trials & Tribulations

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

Friday, May 7, 2021

Day 6-10: My Trials & Tribulations

 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."
I'm Blood Type O negative. I'm also a secretor, meaning I secrete my blood type antigen into other bodily tissues, giving my body a health advantage over non-secretors.

Like many people, I never thought I would get cancer. My father died from issues related to depression and financial failure. My mother and her sister both had Alzheimer's. I know I carry one genetic marker associated with Alzheimer's. This is the illness I was most concerned about developing. I am the first person in my immediate family to be diagnosed with cancer.

Moving Forward
I saw my patient and drove home. I was annoyed that because of the terrible traffic I wasn't able to pull over and take notes. I couldn't remember all that my urologist had said. Did he say 8 millimeter kidney stone or 8 centimeters? Comparing those sizes to a kidney, I realized he probably said millimeter. I called his office early the next day and was connected to him right away. That time I was able to take notes.

He said that his office would call me about setting up a shock wave lithotripsy to zap the kidney stone. It would be at an outpatient surgery center in Encino. I asked him if it was possible to set up the PET scan earlier than three months. It had already been six weeks since the CT scan.

Over a week went by and his office never called me. When the paper approval came through from my insurance, I called his office to book the lithotripsy. I got all the information on where the surgery center was and the prep I would need to go through. I also had to have a Covid-19 test no more than 7 days before the procedure. The lithotripsy was finally booked for November 12, 2020, early in the morning.

I was also trying to get the PET scan scheduled, which would be at a different place, a radiology center. I got the paper approval in the mail and that's when I learned that my urologist ordered a PET scan from my head to my hips. It would be for my entire torso. That realization was scary in and of itself. I called the radiology center to book my appointment. Yes they saw the approval, but the urologist's office did not include the billing code for contrast injection. They could not book the appointment until the urologist's office got that billing code approved.

Getting that additional billing code submitted and approved took several phone calls back and forth to the urologist's office over seven days. Monday November 9, the injection billing code finally showed up at the radiology center and I was able to book the appointment. Lucky for me, they had a late 6:30pm appointment on Wednesday, November 11, the day before my lithotripsy. I grabbed it.

In the meantime, I learned all I could about PET scans.

The PET Scan & Lithotripsy
Going for the PET scan, I felt like I was crossing over to a different life. A life of uncertainty.

I was told to check in for my appointment by 5:30pm. Once I was checked in, I was given a large cup of glucose to drink. Not long after that, I was taken to a room to change into a gown then put into a room with a recliner. An RN came in and inserted an IV and gave me a warming blanket. The IV would be for later, during the PET scan. I then had to relax for about an hour for the glucose to get all through my body.

The next step was getting on the scan table. I had to keep my arms over my head for the entire scan. And that was it. I was all done a little past 7:30pm.  After the scan, I asked how soon my doctor would get the images. The ladies at the front desk said my doctor should get the images in about two days. On Friday I called my doctor. He told me that he could not make heads or tails of the images. He told me that it usually takes a week for him to get the PET scan report. I had to wait.

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.
When I was looking for a new job, I would also say a prayer, a plea to my mother, "Momma, help me find a new job." The new job became a reality about three months later. After the urologist said the word Cancer to me, my prayer to my mother changed. I would ring my wind chime real hard, tears streaming down my face and ask, "Momma, please help me get well." 

More to come....

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.

Reclining for my second dose of chemo with my favorite blankie.

First I am given the steroid (dexamethasone) and anti-nausea (Zolfran) medications together. There would be no saline with this infusion. Once those drugs were done then the RN loaded the Gemzar into my IV. I was posting on Facebook my status in the chair. I wasn't paying attention to my IV site. The RN chastised me for not having my hand and arm straight out. Well, not really chastised, I just felt chastised.

By about 2:40pm the Gemzar was all done and I could go grocery shopping with friends. I did not have any side effects of the chemo drugs that day.

Day 9-10
On Tuesday and Wednesday, I continued to feel good. No side effects. I accomplished some more gardening and changed the nectar in the hummingbird feeders. I shopped for Mother's Day cards to send to friends. I cooked, and did laundry. I made plans to do a deep cleaning of my bedroom and master bath over the weekend. Both were very dusty. Little did I know that just around the bend, fate had a different path in front of me.

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


The next post in this series can be found HERE.
    

Saturday, May 1, 2021

DAY 2-5: My Trials & Tribulations

The previous post can be found HERE.

UPDATE 5/1/21: edited for clarity, grammar

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'd 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 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.

 
At night the garden comes alive with red dragonflies,
white globes, a crescent moon & green butterfly
.

DAY 4
I woke up feeling pretty good but with no appetite. I forced myself to eat. I had the same omelette breakfast as on Day 2, only this time I didn't slow down and eat slow. I tried to eat it all at once. Big mistake. I got horrible pains in my stomach and small intestines. I was certain I was going to throw up. I took 1/2tsp of raw ginger juice straight. I drank a cup of green tea with ginger juice. Ten minutes later I took another 1/2tsp. About ten minutes after that my stomach settled down and I didn't throw up. I rested most of the day and didn't do much at all. I had to force myself to eat. The new quirky thing is, I can't stand the thought of cooked vegetables. I don't know what it is. I can do mashed sweet potatoes okay, but the thought of anything else makes me feel yucky. I munched on carrots and red bell pepper mostly.

DAY 5
This is the first day I felt almost normal. I started to feel hungry! I was getting a bit of an appetite back. 

I'm still adding ginger to my green tea and water. I'm still eating small amounts at a time, just grazing. The thought of cooked veggies is not appetizing. I dropped off my paperwork for disability at my oncologist's office and had a blood draw. I will have to have my blood drawn every three weeks on the first Friday after I receive the Cisplatin and Gemzar. That blood draw has to happen on Friday or I can't receive the next dose of Gemzar on Day 8.

The other news is, I dropped over three pounds from Day 4 to Day 5. This is probably from the little amount of food I ate all week. Hopefully I'll bounce back part of that on Saturday.

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

Monday, April 26, 2021

DAY 1 - My Trials & Tribulations

UPDATE: 4/27 edited for clarity, spelling.
UPDATE: 11:00 PM, below

PART I
LIFE HISTORY

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.......

UPDATE: 11:00 PM
PART II

FIRST DAY CHEMO TREATMENT

A couple hours before I was to leave for my appointment, I started worrying about what would be appropriate clothing for the first day of Chemo. Unfortunately, it's not pajamas. I was going to wear loose linen pants but it's a cold overcast morning. It's been overcast in Los Angeles for about 4-5 days now. It might even rain tonight, a rare occurrence in June. I decided on slightly loose jeans and a pink flannel shirt. Supportive friends on Facebook reading this early morning story told me to wear what I want. I'm sorry, I didn't want a photo of me in jammies on my blog.

My friend Alesia suggested I take a book, a large bottle of water and one of my soft panne blankets. The room got quite cold. I brought everything but a blanket. I should have listened to her. I will most definitely pack one for Day 8 and future days.

I had totally forgotten where I had set my large silver heart necklace Ricky gave me for my 66th Birthday -my favorite- so I wore the gold and diamond pendant he gave me that used to belong to his sister.

Day 1, Cycle 1 appointment was for 11:30 am. I arrive early and hung out in the waiting room.

I got called back to the treatment room at 11:55am. I don't think there's a need for me to come early next time. The RN told me to pick an available seat. It was a small room. There were about 7-8 comfortable looking chairs. They looked like recliners and were very comfy, but they were not recliners.

One side of the room had chairs with dividers between them. The chairs on the other side of the room did not. The RN asked me if I had a port. I replied, "No." I'm given a pillow with a new cover to rest my arms on. All the other patients that were there when I arrived or arrived after me had ports. The RN doesn't always use their ports. Ports are not always used for regularly scheduled Chemo. The Ports are saved for other things I suspect. I wonder in the future if they will put a port in me.

I thought I was going to get an orientation, or a what to expect lecture. I assumed too much. I asked the RN because I was not given any paperwork on it. She said she would give me the documentation to read soon. After I had glanced through the documents on the two Chemo drugs I would be getting, I saw that they were the exact same information from Chemocare.com I had read last night. She asked if I had any questions. I told her this was information I read yesterday. "I thought you hadn't been given anything," she replied. I told her that I had read all this on the web. The only difference was certain information was highlighted that I needed to pay attention to.

Ten minutes later, the RN is setting up my IV. I rolled up my sleeve thinking she would put the needle in the elbow of my arm. I was mistaken again. She used a very small needle into a vein just superior to the lateral side of my right thumb.

From the many autopsy drawings I've reviewed in court, human arms are always depicted with the palms turned up. In anatomy, the palms and what we might think of as the underside of the forearm are actually the anterior or "front side" of the body.

The first injection of my treatment is giving me Zolfran, an anti-nausea medication, a steroid and straight saline. I asked. It's not lactated ringers like I assumed. The RN said that the Zolfran and the steroid will be administered first then the Chemo drugs.

 
My injection site

I told the RN I would appreciate if she took my photo for my blog. She asked if I'd started a blog. I said, "No, I have a crime blog for 13 years where I covered high-profile murder trials in Los Angeles County and that's where I'm going to write about my journey." The RN was very interested in the fact that I previously was a journalist covering murder trials. I told her I would give her the link to my blog and she could read about them.

12:30pm, the Gemzar bag was hung on the IV pole and started. They only infuse one drug at a time. After awhile, my injection site started to get uncomfortable. Not painful really, just achey.

12:50pm, the Cisplatin -the more powerful Chemo was loaded next. My total treatment time for all the IV drugs would be about 2.5 hours.

I asked her about where in the cycle I should start to experience the side effects. She told me something that I wish I had known before I went out on a disability. For my first 21 day cycle, I should be okay. I probably won't experience any side effects. I will most likely start having symptoms on Day 22, when I start Day 1 of my second cycle.

I also learn that I will have to have blood work, blood drawn on the first Friday directly after Day 1. The blood work must be done on Friday or I cannot receive my Day 8 infusion on Monday. This Friday, I believe I'll be okay to take myself. Subsequent months I'll have to wait and see.

This is when I asked the RN to take my photo, (below). I didn't even notice there were birdies over my head until I looked at this photo.

Me in therapy chair

The photo at the top right of the blog is a photo I believe was taken in 2018. That is my natural color. As more gray showed up, I started to lighten my hair.

One of the first symptoms I noticed (but didn't realize was a symptom until much later) is my hair starting to thin and break off in 2019. My personal physician at the time told me it was a normal part of aging.

The Cisplatin was totally infused by 2:30pm. There still was some saline left in the saline bag. She removed the needle, applied some cotton and wrapped a stretchy wrap around it.

When I got home, I was quite tired since I stayed up too late last night writing my first blog post. I rested a bit and did some gardening in the front yard. I felt good. Here's to hopefully a few more good days before the drugs start the assault on my body.

The next post in this series can be found HERE.


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