Thursday, February 2, 2023

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.


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

The next post can be found HERE.

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.