Saturday, May 1, 2021

DAY 2-5: My Trials & Tribulations

The previous post can be found HERE.

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

Day 1 Wrap-up

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

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

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

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

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

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

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

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

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

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

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

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

March - July 2020

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

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

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

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

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

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

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

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

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

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

More to come.....

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

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

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

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

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

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

Below is a photo of my potted garden at night.

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

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

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

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

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

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


hetherfly said...

Hang in there. Go easy on yourself. Hugs.

Sweetingham said...

Betsy, Even if I didn’t know you, I would find your accounts riveting. But because I know you, I’m even more humbled and inspired by your brave and honest reflections. Sending you love and anti-nausea hugs. Take it easy. And if you don’t feel like writing some days, your fans will understand.

Cat's Foray said...

I hope you are doing well… love your website.