Almost two years ago, I was diagnosed with Stage 4 Mantle Cell Lymphoma. 2018 was a terrible rollercoaster, and 2019 held out the hope of recovery and remission.
120 days ago, I celebrated my “birthday” with a bone marrow transplant (Allogeneic Hematopoietic Stem Cell Transplantation, aka alloHSCT) at Johns Hopkins in Baltimore.
These last two weeks have been more dramatic twists, turns, and drops in that rollercoaster.
On October 5th, 2019, we thought that I might a pulled muscle or possibly a hernia, so we went to the local Kaiser-Permanente clinic. After an ultrasound and description of symptoms, our oncologist thought it might be lymphadenitis. I received a week’s worth of Augmentin to treat the supposed lymphadenitis. As the pain increased and the swelling in my left inguinal thigh enlarged, we returned to Kaiser-Permanente several times for blood draws, biopsies, and CT scans.
On October 18th, 2019, which is the 120th day since my transplant, both the biopsies and CT scans confirmed that my cancer had returned and that it is being very aggressive with its rapid growth and progression. In Hopkin’s own results: “Multiple enlarged lymphomas are seen in the left inguinal region including a heterogeneous nodal conglomerate measuring 6.8 x 6.3 x 5.9 cm.”
We spent from 1:20 AM on Friday, October 18th at Kaiser-Permanente in Tysons Corner, VA, until 9:40 PM at Johns Hopkins in Baltimore, MD. I had a battery of blood draws, doppler ultrasounds, and CT scans performed over the course of the day. We had multiple conversations between our oncologist at Kaiser-Permanente (Dr. Shalini Dogra) and our oncologist at Johns Hopkins (Dr. Francisco Javier Bolanos-Meade). Both agreed that my cancer had returned, and due to my immunocompromised state and recent transplant, I could NOT undergo any further traditional chemotherapy or a second bone marrow transplant.
Our last remaining option is an experimental Mantle Cell Lymphoma T-Cell Immunotherapy trial being conducted out of the National Institutes for Health (NIH). Kaiser-Permanente is reaching out to NIH in the hopes that I can be seen on Monday, October 21st, 2019.
I’m in considerable pain and swelling now, which is being managed by Kaiser-Permanente and my loving wife, Victoria. I’m trying to use the least dosage necessary of morphine, oxycontin, and oxycodone over the course of each day so that I can remain awake and coherent, but not writhing in pain. With all of the recent news and developments, our hearts are breaking and we need to narrow the scope of our vision to the immediate. We can only think of the day ahead, not wanting to know what the next month or year may bring.
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Both our hearts are heavy this morning. Yesterday was such a long (literally, 1 AM to 11 PM) and terrible (so much news) day. Victoria and I are slowly trying to absorb and digest everything from yesterday, and to narrow our focus to live only in the moment.
We cannot thank YOU, our family and friends, enough for your love, prayers, kindness, and support. This has been such an ordeal, our hearts are heavy, and sometimes we feel overwhelmed both in our tests of faith and our tests of endurance that we sorely need and are comforted by your presence.