First of all, I want to say a huge thank you for those that fervently stuck with me in prayer and remained a steady source of hope through my silence. There has been a lifeline of encouragement and prayer that has carried me through by far the hardest time of my journey. There are multiple reasons for my lack of communication but the biggest being the fact that the symptoms from my disease have left me with a lot of memory loss, confusion, and mobility issues.
Regardless of how difficult things have gotten, the Lord has remained the source of my hope and I am trusting in his plan for my health. With saying that, there has been so much that has happened over the past few months that has completely left me exhausted and emptied from this fight. If I thought my diagnosis had stripped me of so much and brought me so low before, I’ve now been shown how much lower things could go.
Starting in early August after my last immunotherapy infusion I began having numerous side effects. I began waking up every night with severe chills also called Rigors, followed by bouts of nausea. Then high fever over my whole body. This would start every night at about 1am and wouldn’t break till about 4am. I reported this to my doctor on several occasions but he didn’t take me seriously. My parents and my brother took turns staying up with me and caring for me. I also lost 20 pounds in about 4 weeks.
After 4 weeks my doctor thought that maybe this was side effects from my cancer pills. So he reduced the dosage, however I only got worst I started having severe pain in my back and kidney area as well as numbness in my legs. During this time I also contracted Covid from my dad who got it from work. Fortunately all my family’s symptoms were very mild.
On September 29th my parents saw how sick I looked and I couldn’t keep food down so that evening they took me to the ER. While we were checking in with the nurse I suddenly began convulsing and had a full grand-mull seizure. My heart rate went up and I went into toxic shock. The nurses rushed me into a room and put me on monitors and basically saved my life.
When they got me stabilized. I was admitted to the ICU in the Covid ward. My parents were not allowed in my hospital room. I was there for 4 days and I wasn’t allowed to have a single visit from my family. On two separate nights my church family came to the hospital parking lot. They had a prayer meeting and waved to me through my window.
As it turned out I had a severe E Coli infection in both my kidneys. So bad that after nearly 5 weeks I went in to system wide shock. I spent a total of 4 nights in ICU then was I discharged home. I slept through that night but I’m the morning a nurse came to the house to give me my dose of IV antibiotics but when the medicine was finished I suddenly had a partial seizure. My dad told my mother to call 911. An ambulance came and I was taken back to the ER and again I was alone. Test were done but they couldn’t confirm that I had a seizure. But they put on seizure medication. I was admitted anyway so I could get examined to see if I had a reaction to the medication or I was have more brain issues.
The next day my parents were able to come in the hospital and stay with me in my room. When they arrived they soon found out that I had no recollections of being in the hospital before or why I was there now. I truly had no idea why I was there or what had happened. My vision was so affected that I could only see directly in front of me. I was so scared.
The doctors ran some tests and scans but didn’t know what was causing my vision and memory loss. But that evening I again started convulsing and had another full seizure. This wore me out and affected me so badly that I slept for a long time, woke up briefly. My dad went home and my mom stayed with me. At 3am once again I had a full seizure and I even bit my tongue badly. My mom called the nurses in the room and they gave me a seizure drug to stop the seizure. The drug worked but my body was still so weak that I slept for a very long time. The next day a neurologist came and talk to me about what had happened but I had no memory of the events. I still didn’t know why I was in the hospital. The doctor increased my seizure medication and they also performed an EEG for 12hrs of my brain. After the increased dose I didn’t have any seizure activity at all.
The next day I was released from the hospital I was still so confused that I didn’t even recognize my house or my bedroom. I was also struggling to walk at all. Some one had to support each at all times.
Still even now my doctors do not know why I had the seizures or why I lost my memory. My memory loss is very interesting because for the most part I don’t remember anything of the past 4 weeks but not only that I don’t remember many other things like conversations I’ve had with people.
How am I doing?
Well that’s a good question! There has been a lot of damage done and currently have 4 new brain tumors and I’ve had progression of the cancer in my spine. Because of the location of these tumors, symptoms are pretty intense. There are moments that I know what is going on. I’m socially aware, I can hold conversation and know where I am. But, there are many moments of confusion. It’s very hard for me to keep a train of thought, remember times and situations, and even walk up stairs.
But, that is not why I have written this post! I am reaching out to all of you because I’m encouraged by a new hope that God has provided. After my San Diego oncologist suggested hospice care, we decided to reach out to Dr. Nezami at Orange Coast Medical Center of Hope. I’m encouraged daily by the countless success stories I’ve heard, the constant encouragement from the other patients at this clinic, and the constant encouragement directly from my doctor that doesn’t view me as a statistic or a study but as a person with a future. I truly believe that God has led me here for a specific purpose. To show us his love, grace, and healing power! I am encouraged that I can see healing through these means and that God WILL be glorified.
Praying God hears all your prayers 🙏🏻❤️