Cancer is like a gator. You tangle with one, the potential of coming out unscathed is slim.
May 2017, I went to my chiropractor. When he mentioned that I had lost muscle tone, it didn’t click in. I was taking yoga classes at least 3 times a week, eating well and my belly was big. But, people around me also had big bellies. There was no reason to think my stomach not feeling right would be a benchmark.
My life was turned upside down June 2017. A trip to the hospital, and I was automatically admitted. The doctors first thought was something was wrong with my aorta. Luckily they didn’t follow through. My blood wasn’t clotting and cutting would be bad.
And there they were. My mother called Debbie Marlowe and my cousins Janie and Gary. It still amazes me people willingly go to the hospital to visit. God bless those of you who visit. I hate it. Why would I subject anyone else to it? My family and friends never listen. They show up and I love them.
Debbie Marlowe kept local friends apprised of my battle and the steps we were taking to defeat my cancer. My efforts centered on staying strong and positive. Pain, panic attacks were too much to share more than once. When I thought of someone randomly, I knew they were sending their love. Which will explain the random emojies I sent. I was returning the love the only way I was able.
After two weeks and LOTS of tests, I was transferred to Tampa General Hospital Cancer Center, a teaching hospital and considered one of the best in cancer treatment. Good thing, since the first hospital didn’t accept my insurance and all of the tests they did, had to be redone.
My next clear moment was in the ICU of Tampa General Hospital. My hands were bound. I had gloves on and I was on oxygen. Not the way to come down from drugs. I admit I was rude to the nurse, Ryan. (of course he knows Chicken and I have since apologized.)
That panic moment got even better. I wasn’t allowed to go pee. Ryan wasn’t budging on that either. No, he couldn’t untie me, and I didn’t have to get up and go pee. He did give in to taking off the oxygen when I mentioned I breathe from my mouth. A few moments later my nurse helped me out and I was free to move about the room, with help.
The dried blood under long fingernails bothered me the most. My fingernails don’t grow and chipped easily. I kept them trimmed REAL short as a solution. It took me a few days to figure out why it bothered me. The level of drugs to enable a basic comfort level had me pretty loopy. No one really knew what was wrong with me past the fact I had a form of non Hodgkins lymphoma and I was in for lots of tests.
I was tied up for a reason, an allergy to one of the many drugs I was given. I’d been scratching the hole in my neck from my dialysis wound. Which was another question. Dialysis? I’m good with not knowing.
Finally, I was moved to the cancer wing. I was given a room to myself and a neutropenia diet; a side effect of the cancer treatments. What it meant to me? No flowers in my room and worse, no raw food. A sad day for someone who loves raw fruit and vegetables. They even took away my raw unfiltered honey when I mentioned one food I could eat (12 grain bread with lots of butter and honey).
TGH cancer wing rooms have a great view of Tampa Bay. The storms rolling in were something to watch. Then there was this sailboat that I hope was part of a school. It would only tack back and forth across the channel. Why when you have the bay within view?
June 21, 2017 I was diagnosed with a type of Burkitt lymphoma, a bone cancer and form of non-Hodgkin’s lymphoma. It is an aggressive cancer that has to be treated aggressively. It is THE fastest growing tumor!
The cancer filled my stomach. On the CT scans, NO guts showed at all!
Cancer and how it’s treated is different for everyone.
My cancer was treated with lots and lots of chemo over six months. Two weeks a month I was in the hospital. The rest of the time I was an outpatient, visiting the hospital every other day. The chemo came in an IV bag and by spinal tap. It was administered in different strengths and times it took to get done. The longest drip took 20 hours.
The spinal punch (spinal tap), was the most painful of any of my treatments. With all of the chemo and drugs I was receiving, my spinal fluid was low. With low fluid, getting spinal fluid out is a challenge.
Out of all the spinal punches I had, 16, there was only one doctor, who was able to pull the fluid from my spine and send chemo into my brain with little pain. The rest were bad, moving the needle around until fluid was found. I learned that I am allowed to say stop. And that was tested every time afterwards. The need for spinal fluid to test for cancer wasn’t worth the pain created.
It wasn’t a win win situation. The plan was they take x amount of fluid from my spine, and then put x amount of chemo back in. When you put x amount of chemo in without taking the fluid out, the chemo affected my system more, especially my stomach, body and mind.
Usually the pain was polite, it would challenge one body part at the time. This felt as if all of my body parts slammed the pain button at the same time.
Every day my fellow (medical fellow) asked the same questions; the day of the week and the date. This went on for a couple of days (or longer, it blends, I was on a good amount of pain medication). She was determined. But I made friends with one of my techs. I asked Shelby how was I supposed to know what day it was when they all ran together. She pointed to the white board in my room. Day and date there big as day, and they changed it every morning.
Shelby became my hero when she asked if I wanted to take a shower. Who knew all it took was for me to ask. Learning to ask, another task I’m focusing on.
My hospital stay was dependent on the quality of my blood. I was trapped. I couldn’t keep my hemoglobin count above 300. 1,000 was the goal to get me out of the hospital. 10,000 is a minimum for a healthy person. I was given blood, and platelets to help grow my blood stronger.
To build stronger blood isn’t something you can hope or wish better. Not that I didn’t do plenty of that. My stomach wasn’t my friend and keeping a diet filled with protein was an effort. Debbie Marlowe kept me stocked in home made bone broth for when I was home.
Ridding my body of the toxic chemo took a toll on me as well. Food became toxic poop coming out.
A student doctor came to my room every morning by at 5 am, before the Doctor made rounds with the group. I don’t sleep, so time of day wasn’t an issue. At first, he was another doctor asking the same questions. I told him my brain wasn’t working properly. With that, we came up with a plan to get my brain firing on all cylinders.
Everyday Student would explain something about what was happening to me. Not that I remember any of it. He was making my mind work again. That was my starting point for healing. I was in charge. The cancer was something that could be beaten.
There’s a song in “Frosty the Snowman” about one step in front of the other and you’ll be walking out the door. When things get to be too much, I hear it in the background. It enables me to breathe through the pain and mean thoughts.
My cancer doctor Anika Patel, is one of the best! Once my blood and body were strong enough I was released from the hospital. Dr Patel had a plan to eradicate the cancer now they knew chemo worked and didn’t kill me. It was a two pronged approach, each arm had six rounds of treatment. Each round of Dr Patel’s cocktail of chemo kept me at least 5 days in the hospital. I would then have three days of chemo as an outpatient. The rest of the month was spent trying to build my body back up.
My stay was dependent on how long it took my body to recover from the massive amounts of chemicals. Dr Patel kept a close eye on me, I was at the infusion center every other day for blood or platelets. (Thank my mother, she was the driver!). It’s another thing that is gone. I get huge waves of pain that and nothing can dampen. It keeps my driving radius to 30 minutes.
After my second round of chemo (arm 1, stage a) I had the Skeletor look going; no hair and all of my muscles were gone. I had problems eating and getting around was an effort. My eyes went through a period reading or working on my laptop drove a spike through my right eye. Chemo was killing my body.
In November I had a unexpected break from chemo. I was admitted to the hospital for a fever of 103.5º and low platelets. There was no rooms in the cancer wing though. Luckily the Infusion Center was able to give me platelets until a room opened up.
From being admitted with all the blood work it entailed, to the day after, my blood work showed that I had MRSA. If I didn’t have enough doctors coming to my room before, the number tripled. Infectious disease doctors were added to the mix.
Every part of my body was scanned and tested to figure out where the MRSA found it’s way into my body. The only wound was the one on my toe where I scrapped it on my IV pole. I fought to keep my port. A fight I didn’t win. Anything could have MRSA attached to it, so everything had to go.
A moment of frustration came when I learned that chemo and the antibiotics to kill MRSA can’t be done at the same time. The MRSA fight came first. A month off chemo, pushing the end date of my chemo treatments into the new year.
The month off from my chemo regimen had a few ironies. Before my next round of chemo, my CT scan showed no signs of cancer! I had visible guts again! I was able to skip the last two months of chemo treatments!
The tornado riding on the back of the hurricane.
The perfect adage for the effects of the cancer and drugs to my body. After 6 months of living at a hospital with very little movement, my body wasn’t happy and no longer wanted to be my friend. Yes, I am cancer free and therefore WINNING! I have my 2 year CT scan to make sure I have no cancer July 2019. With my type of cancer if it doesn’t come back within 2 years, it won’t.
With each chemo treatment I was given lots and lots of ciprofloxacin to keep me from dying from the massive amounts of poison being pumped into my body.
Due to the effects of chemo and cipro toxicity, my body and mind are beaten up. I have peripheral neuropathy, which feels like rheumatoid arthritis, in my hands and feet. All of which make walking, sitting, standing a painful challenge.
From the chemo pumped into my brain through a spinal punch two times during each round of treatment (four times a month), my brain isn’t at full strength. Chemo brain is not for the weak. The loss of complex thoughts is terrifying. I watched my father struggle after his stroke. Going from brilliance to struggling to talk wasn’t a happy event.
POSITIVITY is the answer to thriving. I can only control my own actions. I work to stay positive and ward of negativity and frustration.
Cancer is a disease that threatens the very thing that makes us strive day after day, happiness.
I am working my way back to being healthy, active and cancer-free. Every day I’m doing better. I am working with my doctors on pain management. I sadly am not on the path where the cirpo toxicity and brain fog goes away after a year.
There are wonderful doctors out there. I had the fortunate experience of the great doctors, nurses, techs of Tampa General Hospital Cancer Center.
Thank you.
