“You never know how strong you are until being strong is the only choice you have.”
— Cayla Mills
On Tuesday, November 24th (the week of Thanksgiving 2020), I started running a sustained neutropenic fever of 100.6°F. I was admitted to the emergency room at Reston Hospital Center and then transferred to the Progressive Care Unit (PCU, a “step-down unit from Intensive Care”) for the next three days. They gave me IV fluids and heavy antibiotics for all three days, did a chest x-ray followed by a CT scan. I was diagnosed with “walking pneumonia” and neutropenic fever.
I begged the hospital to discharge me into the care of my wife (a licensed and registered critical care nurse) so that I could spend the holidays at home. I explained to them that this is now my THIRD THANKSGIVING SPENT IN THE HOSPITAL. I was diagnosed with Stage 4 Mantle Cell Lymphoma in January of 2018. Thanksgiving and Christmas of 2018, 2019, and now 2020 were all spent in the hospital… and I desperately wanted to go home and spend the holidays with my family instead. Dr. Rao of Reston Hospital agreed, so I was able to go home, but remain on 10 days of Augmentin and Levaquin.
While my fever has subsided, the lymph nodes became more swollen as the week went on. For the past two days, I’ve been in pain and had difficulty swallowing. I can feel multiple lymph nodes in my neck, chest, and abdomen now. They are all swollen, tender to the touch, and make me want to vomit if pressed. I woke up in pain last night and emailed my internist and oncologist:
cc: Dr. Nguyen,
I’ve been ignoring pain in my neck this week suspecting that it was just my lymph nodes being sensitive after my recent bout with pneumonia and/or neutropenic fever in the hospital, but the pain is becoming pronounced enough that I can no longer ignore it. I am having difficulty swallowing, and it is tender enough to the touch that pressing upon my left side causes a wave of pain and an immediate desire to vomit.
I can now feel painful lumps in my neck and middle abdomen on the left side underneath my rib cage. Touching any of them causes me pain and nausea, pressing upon them creates an immediate desire to vomit. Swallowing liquids or food is causing me pain.
Please advise. I am currently taking Oxycodone to control the pain with Zofran as needed. This is scaring me. It’s behaving and feeling much like it did in February 2018 when I was first diagnosed with Stage 4 Mantle Cell Lymphoma.
Swollen lymph nodes, swollen spleen, fatigue, nausea, pain.
3) Mantle Cell Lymphoma (MCL)
As many know, my wife is a critical care nurse. She had me stick out my tongue and go “ahh” and saw that my throat is swollen with white bumps, making her wonder whether this is an infection (CMV or Mono) rather than Lymphoma.
We’re waiting to see what Dr. H.A. Nguyen (my internist) and Dr. Shalini Dogra (my oncologist) recommend next.
Praying for a relief of your pain and illness.