My Cancer Journey Update: April 22, 2023

 
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 next post can be found HERE.

I'm Still Here on the Planet... Catching Up, 2/2/2023.

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.

 

The next post can be found HERE.

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

The next post can be found HERE.

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.
    

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

A Special Gift

Close-up: Sprocket & Matthew McGough

Background: DDA Shannon Presby, Judge Perry, Mark Overland

© by artist Thomas Broersma, all rights reserved.

March 1, 2020
Last Friday, I had dinner with friends and author Matthew McGough. After dinner, Matt surprised me with a special gift.

Eight years ago at the Stephanie Lazarus trial, Thomas Broersma, a young art student came to the trial sat in the back of the gallery and sketched what he saw. Some of his drawings ended up in my daily posts on the Lazarus trial. Unbeknownst to me, Matthew asked Thomas to sketch the both of us. The photo is the drawing that Thomas made for Matthew.

This is a special gift in memory of our time covering the Lazarus trial together. It is hanging in my dining area, along with another special surprise.

Monica Sementilli & Robert Louis Baker, Pretrial Hearing 6, & Sprocket News

Previous post can be found HERE.

UPDATE 10/20 edited for spelling, grammar, clarity. Sprocket
Ocober 2, 2018
Fabio Sementilli
It's after 8:00 am when I arrive on the 9th floor. Mr. Simmrin arrives around the same time I do. I politely ask Mr. Simmrin if he expects the hearing to go long today. He's kindly tells me that it should be a short hearing today.

Sementilli's defense team (Berk, Levine, gray haired gentleman and the tall thin man) arrives and Monica's sister, Anna Larson is here with them.  This is the same woman I've seen at prior court hearings. The big burly Sargent Westphal arrives with his keys to open Dept. 101, Judge Coen's court.

There are several members of Fabio's family here in the hallway. Two very pretty women and three men who all flew in from Canada. They are all wearing black shirts with "Rest in Peace Beloved Fabio" printed on the back.

I rush into Dept 101 because I want to be sure I get the aisle seat where I can hear the best.

DDA's Beth Silverman and Melissa Opper arrive. Beth is wearing a red and white dress with a matching red jacket and red leather handbag. She has something on I've rarely seen her wear. Flats. They are gray and go quite well with the dress. Usually, Beth is in heels. Melissa is wearing as usual, a dark suit.

Beth comes over to greet the family and also ask how things are going with me. (See note below.) Beth does one of the many things that she does best for the family, patiently answer their questions.

In the gallery I also answer questions for Fabio's family, pointing out who is who.

8:40 AM
Judge Coen takes the bench. A minute ago, chairs were being set up for the defendants. Defendants are put in chairs that do not have rollers on them. I point out to the family member beside me where each defendant will sit.

Mr. Simmrin comes out from the custody area. He must have been visiting with his client. Defendant Sementilli comes out first in the blue jumpsuit. Baker comes out quickly after and they are placed in the same chairs as the last few hearings.

Judge Coen goes on the record.  There are discovery items filed [by the people?]. The letter seized from Baker at the last hearing. The parties discuss the discovery issue of the seized letter. Sementilli's counsel wants to see the letter. DDA Silverman tells the court that unless Mr. Simmrin has any [discovery] issues, DDA Silverman will give a copy to Sementilli's counsel.  Mr. Simmrin states he has no issues with the letter.

Judge Coen appears a bit miffed on the bench. He asks the people why this wasn't handled informally instead of bringing this in front of him. The court tells the parties that he doesn't need to be involved in these issues. That they should be resolved between the parties and not involve the court's time.

Levine brings up to the court [possibly a motion?] that deals with any other letters in the Sheriff's possession, involving communication between defendants.

Judge Coen brings up search warrant affidavits. DDA Silverman informs the court that many of the search warrants are sealed. The people have been asking for discovery from the LAPD. By October 9, the court orders all discovery turned over.  I'm not certain, but as of today's date, I don't believe the people have received a single piece discovery from either defendant.

Levine brings up something about the hard drives that are needed for the people's discovery. He asks if the prosecution knows when there will be an end to discovery. Levine tells the court, "We want to get to trial as soon as possible." Levine wants to know the end of [discovery?] inquiry.

Judge Coen informs the parties that at this time, because his calendar is getting tight, they should put in a trial date. No other reason to block out time.  Currently, Judge Coen only has 19 days in January 2019 [for a trial]. Mr. Simmrin shakes his head about being ready to defend his client for trial in January. Regardless, it's my understanding that the case will need much more time than that. Coen states the next available time is the last week of April.

DDA Silverman informs the court that there is an ongoing investigation by the LAPD, which she does not have in her hand.

Levine tells the court they want an earlier date for trial. "We are not waiving time." The court responds, "I know, but I will make [whatever?] findings I have to make." Judge Coen adds, I've known Mr. Simmrin for years.  Judge Coen rules. He states Mr. Baker's 6th Amendment rights trumps everything, even defendant Sementilli's right to a speedy trial.

Judge Coen sets a potential start date  for Wednesday, April 24, or the next week starting on the 29th. Coen states it will be a six week trial.  DDA Silverman mentions something about the time frame or length of the trial that I miss.

Simmrin tells the court that he just received a 2 Terabyte hard drive of people discovery that he has not seen yet. Levine tells the court that they have some discovery but the latest batch does not have something. They appear to be ahead of Simmrin [in receiving their discovery?].

The trial start date is selected. April 29th for a six week trial. The court clock will be set at zero of ten on that date.  Mr. Simmrin is okay with that date.

The court asks for the next question. Levine is not agreeable to that date. They do not waive time. They would file a motion. The court asks, "Motion to sever, correct? ... Since you're not waiving time?"

Judge Coen states he knows Mr. Simmrin to be a top lawyer. "...one of the best." Judge Coen asks Levine if he thinks he [Mr. Simmrin] is slacking off.  Judge Coen then rules. As I've seen him do before, he goes to one of those long black file boxes and reads from a ruling. There is "...good cause to continue. ... do find good cause to continue Sementilli case over counsel's objection." Judge Coen continues to read from the prior case law but he's too fast for me to get it all.

Levine requests a return date of December 13, and perhaps an inquiry of Mr. Simmrin [as to his readiness]. Levine question whether they should go to another court. Judge Coen states it is not his business to question Mr Simmrin.

Mr. Simmrin tells the court, regarding an earlier trial date, "...given all the discovery, ... I highly doubt that."

And that's it. It's over quickly. Defendant Sementilli's sister in the gallery stands as Sementilli is being led out of the courtroom. As she is led back into the custody area, Sementill looks at her sister and smiles.

The friends and family of Fabio who attended the hearing are: Fabio's sister Mirella Sementilli Rota and her husband Marco; Fabio's sister Loreta, her husband, Joe, and eldest son Anthony. The family shared with me one of Fabio's sayings: "Chin up and charge that mountain." Fabio's family cannot come to every court hearing, but they tell me their souls are here if not in body. The family asks if local friends of Fabio can attend these hearings to represent Fabio since they are unable to do so.

The next hearing on the case can be found HERE.

Sprocket News
A little personal, bumpy ride here. I apologize to T&T readers that my notes on this hearing are over two weeks late. I hope you will forgive me when I share the reason why.

Over the past year, my life has changed dramatically. September 29, I sold my house. Escrow closes tomorrow. My last day on the property is October 28 where I will move into temporary housing. After 17 years of marriage, I am forging ahead on a new journey as a single woman again. Please do not be sad for me. My marriage was over many years ago. It wasn't until early this year that I realized I had to give up many things I appreciated about my life, being a wife, a homeowner, my hummingbird garden and possibly my trial reporting, to start again with a new life and new journey.

I don't know what the future holds for me or where I will be in six months. I'm hopeful that I will be able to stay in the area that I love and continue T&T for the next year, possibly two. Beyond that, it is unknown if T&T will continue operating.

If you have appreciated the eleven-and-a-half years of T&T's in-depth trial coverage, a donation to my trial reporting costs would be most appreciative and helpful at this time.You can click on the link to the right that says "Donate". Your bank statement will indicate a charge to "Betsy Ross Linens" which is the bank account I use for T&T and my sewing business.

A Personal Journey
T&T has not only a US readership but an international readership as well. T&T receives hits from people all over the globe dropping in to read the stories T&T has covered over the years.

I have been a some-what public person, at least on the web for over eleven years. In addition to covering high profile trials, I've also written briefly about more personal journeys. The retaliation that Phil Spector and his trial bride wife did to me during Spector's first then second trial; negative blog feedback; becoming friends with Dominick Dunne during Spector and his passing; my sewing business; a Thanksgiving disaster; my health; the antics of my cats; special honors; longtime friends, trial friends, and new trial friends; T&T fan mail; the loss of my beloved long-time companion, Sprocket Cat; my husband's various health issues; local wild fires; and my hummingbird nesting garden. I've shared quite a bit of my life on T&T.

I have been awed by all the women who have had the courage to come forward with their "Me Too" stories. But I also understand from a recent, very painful personal experience why many women remain silent. It is a very individual choice whether to go public or not against another person about a violation or betrayal of trust when that person may be powerful or a pubic personality. So from that, I also respect and honor those who choose to remain silent. You cannot judge someone who chooses to remain silent about an event that is overwhelmingly painful and raw.

On my own personal journey, I know my path has always been one of personal growth, and forgiveness of others, even those who have deeply wronged me. My journey has never been about causing pain to others. That is the path I walk.

The shortest and surest way to live with honor in the world,
is to be in reality what we would appear to be;
and if we observe, we shall find, that all human virtues
increase and are strengthened
by the practice and experience of them.
-Socrates (469-399 B.C.)

Southern California Wildfires

Personal Stories
City: Los Angeles, CA
Basin: San Fernando Valley

I took the above photo about 30 minutes ago by stepping onto my street in front of my house and pointing my camera at the western sky. It's filled with smoke. The winds have taken hold of the smoke and the smell has invaded through the tiny cracks of my home.

I then pointed my camera at the eastern horizon. It's more of the same.

The Creek Fire started around 4:00 am near Sylmar, CA, which is about 25 miles from my home. Sylmar is in the northeastern edge of the San Fernando Valley, and butts up against the Angeles National Forest. This story from local ABC7 gives some information on this fire.

A little ways up the I-5 below Santa Clarita the Rye Fire broke out this morning. Santa Clarita is in Los Angeles county and about 40 miles from where I live. This Los Angeles Times story gives a quick update on this fire.

The Thomas Fire sprung up overnight in Ventura County, which is 50 miles to the west of where I live. Over 150 structures in that county have been destroyed. Thousands of people have evacuated the city of Ventura and surrounding areas. This Washington Post story will give you the latest on what Southern Californians are facing.