First I want to express my deepest concern for family and loved ones affected by this news of my stage IV T-cell Lymphoma diagnosis, and to give hope that everything will be OKAY! God has got this! Persistence plays a BIG role, and prayer support carries us through. Praise God! Yes, we believe in miracles.
For those not familiar with T-cell Lymphoma, it is a rare blood cancer categorized as Non-Hodgkin's lymphoma (NHL). It develops from a type of white blood cell, called a T-lymphocyte. Normally lymphocytes are a part of the immune system that travel around the body in the lymphatic system helping fight infections. My T-cells are attacking themselves, creating histamines and triggering a rapid inflammatory process.
When did this start? My journey was unexpected with no previous signs or symptoms. Tests were cleared earlier this year for my annual physical with flying colors. However, on May 19, 2022 is the day it all began. Plans of driving to SFSU to pick up my youngest daughter for summer break were already in place. I had a shoulder injury earlier that morning which set me behind schedule. This in itself is unheard of since my 4 children are used to me being super-mom! Eight days later, May 27th an MRI was scheduled for my shoulder. THAT day I noticed red rashes on my thighs, then later my arms. The same day painful lumps appeared on the back of my head and neck, and the back of my shoulders. After the MRI that evening, I informed my daughter I was going to the ER near my home in the morning. Pain started to radiate to my joints and muscles, my chest hurt, and I couldn't breathe. On May 31st, three days later at the same ER, my abdomen was very distended with sharp pain. The doctors noticed my liver was enlarged and referred me to another hospital with a GI team.
I was admitted to the second hospital the same day. The GI team focused on an enlarged gallbladder with plans to remove it until I was more stable. I stayed there 8 days, NPO for 6, with a low blood pressure of 80/40. I received continuous IV fluids to keep my BP up and almost passed twice. VERY PAINFUL! I gained 30lbs of water weight and was discharged June 7th preparing to schedule surgery for a gallbladder removal.
At home, I could no longer tolerate the pain of internal and external swelling during the week. I went to a third ER on June 18th, Loma Linda University Hospital in Murrieta, CA. The ER doctor was an angel and knew right away what was going on. I was admitted for 6 days and the team ordered additional tests and biopsies. Dr. Doraiswamy (Hematology/Oncologist) came to my room and introduced herself. She was adamant about me visiting her office immediately after discharge. June 27th, in her office she handed me the final bone marrow report with the diagnosis and a treatment plan. I thought: "Okay, what else can I do?" More diagnostic tests were ordered and an informative cCARE Zoom meeting for the next steps of treatment.
I started IV chemotherapy July 12th at the cCARE Cancer Center in Murrieta, CA. Dr. Doraiswamy and her staff are so professional and always make me feel comfortable. The chemo treatment has been a seamless 6 sessions using the I.V. CHOP regimen every 3 weeks. I trust Dr. Doraiswamy's care and her recommendation to continue treatment with UC San Diego Health BMT. I've had a smooth transition from one healthcare team to the next.
UC San Diego Health is a beautiful campus in La Jolla with at least five buildings to accommodate cancer patients and their families. I am so impressed with their knowledge and the considerate approach led by the entire team. My transplant coordinator keeps me informed and on track with workup appointments. My case manager helps with paperwork and resources for healthcare decisions, financial needs, and more. This process has been especially challenging for my family with rising transportation and housing costs.
So how does this bone marrow transplant work? I will be using my own stem hematoietic cells and there are 3 basic BMT phases. I am currently in the workup phase doing many labs and diagnostic tests. Soon a large tunneled IV catheter will be inserted in my chest to remove the stem hematopoietic cells and save them for later.
"Phase one" starts at the Moores building on the UCSD campus where I will be admitted for 2-3 weeks. High doses of chemo will be given for about a week. Every vaccine administered from birth will be wiped out and I will have no immune system. Approximately 24-48 hrs later "phase two" will begin with the reinfusion of my own stem hematopoietic cells, followed by the grafting period (where the stem hematopoietic cells will mature inside the bone marrow). Once my blood count is high enough, I will be discharged home for recovery, "phase three" and on quarantine for 3-4 weeks with my primary caregiver and lots of strict rules.
I still feel like this can't be happening! Rather than being negative, I have challenged myself with forward-thinking, finding diet solutions, doing research, and paying close attention to how I feel. I don't ask "why me?" My faith is HUGE as God has proven time again, He's got this! He has been so great in my life that even if he does not do anything else, He has done more than enough. His will be done. God never stops loving and giving, and He never stops offering teaching moments to build our character and faith.
***I am grateful for your outreach and support and invite you to scroll the website and read my Journal, view needed tasks, or drop a comment in the Guestbook. Thank you for stopping by and learning more. Hopefully, you will be inspired!