Patricia’s Story

Site created on December 17, 2020

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Journal entry by Patricia Thornton

Well, I have been putting off writing this; I am sure you can imagine why.

Your author today is Miranda, aka: “The Best Daughter,” a title I have self-assigned to amuse myself when signing and listing the “relationship to patient,” on the myriads of forms I have signed in the last several weeks. (It is important to find joy in the little things in life—this is how I entertain myself!) In case you are wondering, I list Rhonda as “The Old Daughter.” I have yet to determine Amanda and Montana’s titles. I am open to suggestions. Missy, as always, is still “The Bossy Sister/Daughter.” I have created this page, but all of the sisters have been extended right to author on this page (and assign their own titles! Lol).

My mom (Pat) was diagnosed with Stage IV Transitional Cell Kidney Cancer, just before Thanksgiving this year. She has been sick, off and on, throughout the year. Initially, she thought it was COVID, before COVID was a thing. She was extremely sick in January, and in February, she developed a terrible cough that she could not shake. With summer, she began to feel better and although she still had extreme fatigue, she was back to her typical globetrotting—just slower. In June and July, she had cataract surgery in Oklahoma, which involved several trips that direction.

Towards the end of July, though, she started feeling ill again. Finally The Old Sister, The Bossy Sister, and Amanda convinced mom that she should seek medical treatment. As you may know, mom always preferred holistic medications (and an organic diet), and had not seen a medical doctor for years. Mom saw a cardiologist and a pulmonologist, starting in September (I think?). The cardiologist said her heart/arteries were fine, but was going to do a stress test, just to check. During a CT scan (ordered by the pulmonologist) in October, they found a small mass on mom’s lung. The doctor ordered a PET scan to determine more information. Mom continued to become more lethargic, and just sat in her chair the majority of the day. While the grandkids still came over regularly, the sisters usually were the ones taking care of them—and mom. The Old Sister had created a schedule and each sister who lived in the area was responsible for ensuring that mom had dinner each night. The Best Daughter (me, of course!) worked with the sisters to get mom’s house clean.

The week before Thanksgiving, though, mom became even more lethargic and had even worse malaise than before. She also had other urinary related symptoms, which resulted in The Bossy Sister (with The Old Sister) making mom go to the Emergency Room. I believe I heard the conversation went something like this, Bossy Sister: “you either get up and go to the ER, or I am going to carry you to the car.” Thankfully, The Bossy Sister is Bossy, and collectively, all of mom’s children are even more stubborn than she is!

At the ER, the doctor immediately suspected cancer. While mom had recently had a CT scan, they had only looked at her chest on the CT scan. The ER doctor ordered a CT scan of mom’s abdomen. It would be a week though, before we got confirmation and an official diagnosis. In the ER, they diagnosed mom with a severe UTI, and admitted her to the hospital. That was a Wednesday. On Thursday, they did a bone scan, and on Friday, they biopsied the mass on mom’s lung.

They found a 5cm mass on mom’s right kidney, and a 1.3cm mass on mom’s lung. The bone scan was clear, which meant that there was not cancer in her bones/bone marrow. Over the weekend, we were told the news we all expected, but no one wanted to hear: The cells on the lung were kidney cancer cells. Mom had cancer. By definition, this also meant that the cancer (which originated in the kidney) had spread to the lung, or in other words had metastasized. Since the cancer had already metastasized, it was diagnosed at Stage IV (this is the only stage that ‘allows’ for metastasization.) Cancer must travel through the bones or the lymph nodes, to move through the body. Since her bone scan was clear, this meant that we could expect that there was cancer in her lymph nodes. (A PET scan was needed to determine how bad it was.) Being that mom prefers holistic treatment to pharmaceutical treatment, she immediately stated that she did not want to do chemo. Mom was discharged from the hospital the following Monday, the Monday before Thanksgiving, with instructions to follow up with the cancer doctor, at the cancer center the following day. From here, the whirlwind began. We knew that she had kidney cancer, and we knew (although we had not yet been told) that it was Stage IV. We left thinking that since mom did not want chemo, that we were looking at surgery; most likely a radical nephrectomy.

On Tuesday, we made our first trip to the cancer center. This is where we learned that she had Transitional Cell Kidney Cancer—the most common type of kidney cancer is Clear Cell. (Of course mom couldn’t have that one!) Since the Clear Cell Cancer is more common, there are more treatments for it. We did not have many options for the type of cancer mom had. The doctor needed more information to be able to tell us what our options even were. They drew more blood from mom, reordered the PET Scan (it was cancelled since mom was in the hospital when it was originally scheduled), and sent us home.

On the Friday after Thanksgiving, the doctor called us (we knew it was bad if he was calling this day!), and told us mom’s treatment options.

Mom had four treatment options. 1: Traditional chemo. 2. Immunotherapy. 3. A research study/clinical trial. 4.  Do nothing, and immediately go on hospice. The doctor told her if she chose this option, she had 3-4 months to live. Surgery WAS NOT an option. …obviously the news could get worse….

We told the doctor that we needed to discuss these options and would get back to him. Mom did not want chemo, and had said for years (after watching several relatives go through chemo) that she would never do chemo. The Old Sister (being in the medical field) and The Best Sister (being the researcher), already knew that immunotherapy would take time to work—and may not work at all. Chemotherapy does not have a great track record with kidney cancer either—at least not with Clear Cell Renal Cancer (mom has Transitional Cell). Of course doing nothing was not an option. Thankfully mom agreed--to treatment  AND to chemo!! After a few tears and a short conversation, we decided that mom would do treatment. Now to decide which one. Eventually, we decided that mom would try for the clinical trial.

Chemo does not have the best track record for kidney cancer, and immunotherapy uses your own immune system to fight off the cancer. However, immunotherapy takes longer to work than chemo. The clinical trial had three “arms.” Arm 1 is the “Standard of Care” which is just chemo. Arm 2 is the Standard of Care (chemo) plus 1 immuotherapy. Arm 3 is Standard of Care and 2 immunotherapies. This is a Phase 3 trial (which means it has already been tested and found to be 1) safe and 2) at least as effective as chemo alone. All of the research I found indicated that the best outcomes for mom’s type of cancer was the combination of immunotherapy and chemo. However, insurance does not currently pay for both. If she qualified for the study, mom would be randomly assigned to one of the arms. This meant that mom had a 2 in 3 chance of getting chemo and immunotherapy. We opted for this gamble.

Over the next few weeks, we jumped through dozens of hoops, in an attempt to qualify for this research study. Mom had the PET Scan, more CT scans and LOTS of blood work. The PET Scan showed (as expected) that there was lymph node involvement around the right kidney, which has the mass. There was also some involvement in nodes around the left kidney, and slight involvement with nodes going up the spine. The involvement stopped around the stomach area. So now, we have metastasized kidney cancer, which is in the lymph nodes, and goes toward her heart…. Another stab in the gut….

Mom signed the research study consent forms on 12/1, with a projected start date for chemo on 12/22. More scans, more bloodwork, the rollercoaster was sickening. Over the next 3 weeks, we had 1-3 doctor appointments a week, and a surgery just last week to have a port (for chemo) placed.   

On Monday, we learned that mom’s Creatinine clearance rate was too low for the study. She would not be starting chemo on 12/22, as we had planned for the last 3 weeks. Also, she could not take the chemo medications that the doctor had precertified, with the insurance company, because of her current bloodwork. This meant that 1) mom does not qualify for the research study, and 2) mom would have to wait 2-3 more weeks before her first treatment (remember, its already 1 month into her 3-4 month life expectancy, and now we’re being told it will be ANOTHER month before she gets her first treatment). Wasting an entire month, just to learn that mom would not qualify for this study, and we were back at square one, was my biggest fear when we were first considering participation in the study. My biggest fear just came true. Worse than that, we were told this was based, primarily on her age. ….her age which had not changed from the day that we signed consent for this study. And suddenly, just like that, BOOM: The Best Daughter just turned in to The Biggest Bitch Daughter.

The Biggest Bitch Daughter ensured that we saw the doctor immediately, and addressed the fact that they just wasted a month of my mother’s life, and that now we had to wait another month for treatment. They had just wasted HALF of her life!!! My mother was in pain. My mother was told she had four months to live, and they had just wasted one fourth of that precious time AND were going to need ANOTHER MONTH to get her treatment!!!! I was the most professional Biggest Bitch you have ever seen (holding on to the ‘I’m Gonna Fuck Your World up Right Here and Right Now Bitch’ for when the ‘Professional Biggest Bitch’ didn’t get us anywhere). I may not be a traditional medial professional, but I know health care protocol and I know research protocol, and they had just fuuuuucked up!!! We spent the next 30 minutes or so “talking” with the research coordinator and the doctor, about various options.

Long story short, this rollercoaster ended with us going to the ER and being admitted, with a plan that was acceptable. Mom received IV fluids for several hours, and the next morning, we were discharged and told to rush to the cancer center to get the first chemo treatment as originally planned (this was a much shorter hospital stay than had originally been anticipated!). Suddenly, we were eligible for the research study again, AND we were getting treatment today!!!! Thank goodness!!!! It was like mom was getting her life back!!! We did as told (I know!!! Total first for me!! Lol). We got to the center, buuuuttt….. THEN were told that even though we now met the criteria for the study, we still could not start chemo that day. Even though the doctor told us we were ready, we still had a few hoops for the research study that we had to jump through. We saw the doctor, saw the vampires, and waited to if we were going to be in the study or not. ….waiting...….pins….......needles….....waiting…....

Researcher: Okay,  you are in!! We got it!!! Horray!!!! …..You have been randomized to the Standard of Care Arm.

BOOM!!

…..the curtain dropped.....

We had a 2 out of 3 shot to get the care that the current research studies say is the ideal. …and we got the basic. ….we were waiting for a Tesla, and we just got the Focus. …FML.

My heart dropped. I look at mom. Mom had tears in her eyes. F. M. L.!!!!!

I tell mom that maybe we should leave the study. The doctor had told us on Monday that if mom did not get into the study that he would put her on chemo (while we were in the hospital), and he would also give her Keytruda (a type of immunotherapy). If the research study was only giving chemo, and the current research articles say this isn’t always effective, let’s go with the doctor’s plan—lets withdraw from the study, mom. I am saying all of this in front of the researcher, cuz I don’t care about her feelings, or her study, or anything else (I do love her, and she is amazing, but my mom comes first!!!). Fuck her study, let’s do chemo and Keytruda, mom!!

OH, WAIT!!! Says the researcher, I just got an email!!! WAIT!!! They put her in the arm with 1 immunotherapy!!!!!

What!?!?!? I ask. Still stuck on this rollercoaster from hell.

The researcher repeats herself. Her cell phone rings, her coworkers are calling her to tell her that there was a mistake and that we have been randomized to the arm with the immunotherapy!!!

It’s a Christmas Miracle!!! Says the researcher. I prayed for this, she says!!

I tell mom that we should stick with the study now. (Chemo and Keytruda was a great alternative, but there has to be a reason they are testing this particular immunotherapy for her particular type of cancer [did I mention I found the research study proposal and read it all weeks ago?] and I think that the research study is our best alternative.) I tell the researcher that we won’t be breaking up with her after all. (...and I still love her---and all the nurses and staff at the Cancer Center!!!!) 

We left with an appointment to start chemo and immunotherapy the next day, at 8:30am.

To recap: last week: You’re in, for sure. Monday, you’re out. (scene: Biggest Bitch), Researcher/Doctor: uummmmm……let’s retest and see if you can still get in. Tuesday: Okay, you are in—but not today. Tuesday afternoon: you are in, but only getting Standard of Care. Me to Mom: I think we should consider leaving the study then. Ten minutes later: Researcher: Oh wait, I was wrong, you are in the arm with Standard of Care AND 1 immunotheapy. Me to mom: Okay, we should stay in the study. Researcher: okay, come back in the morning. Tuesday afternoon: We get off the rollercoaster….for today. Mom and I both went home (Mom's home is now my home too), and napped....for a LOOOOONG time!!

And here we are now. That day is today: Mom’s first chemo treatment. The day I am finally writing up the beginning of mom’s story. I decided a while ago that I would spend the 5-8 hours that mom is in chemo today writing this up. So there you have it. We are starting a journey that we have been prepping for over the last several weeks. There is a fight ahead of us, mostly for mom.

Mom had immunotherapy first thing this morning. Then fluids, the chemo, then fluids again, then….idk. We come back next week for a second dose of something. Then we are off a week. Mom has chemo every 3 weeks. Week 1: chemo, Week 2: Second dose of something. Week 3: off. Week 4: start over, aka Week 1. Mom is scheduled to do 6 rounds of this. She will be in this 3 week cycle for 5 months (if I can math correctly). During this time, she will also be having regular CT scans to check the progress of the cancer. We do not know, currently, if surgery will become an option again.

Mom loves your thoughts, prayers, texts, calls, etc. However, she (nor I) may not answer you quickly—if at all. As you can imagine, this process has taken an emotional toll on everyone as well. For some of us, life as we knew it before cancer stopped: life is now 24/7 mom and cancer. For others, it is just one more plate to keep spinning with the myriads of other things we have to do each day.  We love that we are on your mind, but responding to messages required energy that we may not have. On behalf of mom and all the sisters, I thank you ahead of time for any thoughts, prayers, energy, texts, messages, calls, cards, etc. that you may send.

 

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