A Survivor’s Triumph Over Double-Hit Lymphoma: Attitude Is Everything (Part 2 of 3)

This article series was written exclusively for LymphomaInfo.net by Jeff Permuy, JP_NHL on this website and SupportGroups.com.

Click here to read Part 1.

As a healthy male in my early 40s, I have spent most of my adulthood staying active and eating well. I did not rely on vitamins or medication for allergies and injuries. When I broke my fibula in 2001, I avoided taking pain killers while the bone healed on its own.

Suddenly, I was required to take a handful of prescription drugs and steroids. I would need a MUGA scan to evaluate my heart and make sure it could withstand the cardiotoxicity from the doxorubicin in the chemo cocktail.

Once I was given the clean bill of health to get started with treatment, I would have a peripherally inserted central catheter (PICC) with a double lumen put in to allow easy access for the IV chemo and saline drip. The PICC line, to be inserted through my right bicep, would require the medical staff to use my left arm when taking my blood pressure (BP). I would need to be very careful when cleaning myself, making sure to keep the PICC line dry. It was quite an adjustment, and I had not even started with chemotherapy.

The Treatment Plan

DA R-EPOCH would require six days in the hospital: Rituxan on the first day, treated at the Infusion Center, and then five days as an inpatient undergoing chemotherapy. Each round of HDCT would be followed by daily Neupogen injections (up to 10 shots per cycle) used to stimulate the bone marrow into producing higher absolute neutrophil counts (ANC) — many of these white blood cells (WBC), which protect the immune system against infectious intruders, are targeted and destroyed by chemo.

Intrathecal chemotherapy was to be administered twice per cycle via an Ommaya Reservoir or a lumbar puncture (LP). Neither option of getting chemo into the cerebrospinal fluid (CSF) sounded reasonably safe or minimally painful:

1. have a port (reservoir dome) surgically mounted between my scalp and skull, attached to a catheter that would run through my brain (with the slight chance of hemorrhaging, infection and neurologic damage); or
2. have a needle inserted into my spine, increasing the risk of internal bleeding and post-LP headaches with each spinal tap.

In deciding between the lesser of the two evils, I chose not to go with brain surgery, figuring the LP would be safer.

The Mantra

Before I could process all of the information, my oncologist recommended getting a bone marrow biopsy (BMB) as soon as possible. So I opted to do it the same day.

While leaning on my side, waiting for the needle to infiltrate my hip bone, the following phrase came to me: “Be calm, stay strong.” As the young doctor toiled to get a specimen, yanking and thrusting through the dense bone, it struck me as a comically ironic moment when I expressed my concern for him: “Doc, are you okay? Don’t strain yourself.” He was not amused; however, his assistant and I had a good chuckle.

A few days later, my oncologist reported no presence of cancer in the bone marrow. Finally some good news!

I was already taking on the cancer; now I was ready to take on the chemo. So I put forth a motto representing my mission: Endure, Persevere, Rebuild.

Click here to read Part 3.