We all have one of those closets that you need to kick its door with force to be able to shut it closed, as there is so much junk behind its doors. However, when it’s shut no one knows the difference nor suspects the mounds of hoarded crap on the inside.
Earlier this week, it was as if the door on mine busted off its hinges and all the junk just couldn’t be contained. Figurative glass vases, decks of cards, untouched workout equipment, old coat upon coat, dusty pillar candles, all came flying at my head. I felt as if I were buried in bags filled with more paper bags, reams of tissue paper, rolls of wrapping paper, and fabric scraps that I might use some day, drowning in the very things that that closet door usually keeps safely distant from me.
However, instead of those inanimate objects, it was every Hodgkin Lymphoma B symptom I have experienced in 3-and-a-half years of living with the disease. Things spiraled even more out of control after Tuesday. My mom came over to drive me to get my Cortisol level checked and to spend the day caring for me as I could barely see past the bridge of my own nose, woozy with pain and weakness.
Throughout the day and night, everything came flying at me: incredible pain in my bones and aches in my body tissues; shaking chills; insatiable itchiness on my lower legs and chest, sweats that soaked so bad I had to change my clothes four times throughout the night; swollen, palpable lymph nodes; nausea; a good vomit session as soon as Craig pulled in from work to take the caregiver baton; lack of appetite; fevers reaching nearly 103 degrees; weakness beyond belief. I was a hot, hot mess.
I was in touch with my nurses at Columbia throughout the day, filling them in on the downward spiral. It got to be 8:30 Wednesday night and I was so fevery, I was crying to Craig and contemplating a trip to the Emergency Room. We were weighing the options of what to do.
Then my cell phone rang, and it was Dr. O himself, calling me from California to tell me he heard about everything going on and to talk me through a new thought process. That’s the sign of a truly good doctor. He wasn’t even in his office, but took the time to call me to figure this all out and even give me his cell phone number to call or text him if anything further came up after our conversation. He immediately made me feel better as his suggestions matched seamlessly with the layman’s medical thought process I had been having also.
He didn’t even want to wait for the Cortisol level return. He knew instinctively that this wasn’t an adrenal failure, but that instead the anti-inflammatory powers of the Prednisone – even at such a small dose – had been holding back all of the Hodgkin symptoms I was now experiencing. The Prednisone had been my closet door and when that busted open, out came all the realities of what was happening inside my body. He was right. 24 hours later, my Cortisol level read at 12.4 – actually a little higher than normal.
He told me to take 10mg of Prednisone that night. Within an hour, it was as if that door was shut again and all the crashing, clanking, and screaming stopped. All was quiet, balanced and stable again. It was incredible. He told me to continue to drink fluids like a horse, which I did, and continue to do. We conceded that the NAE Inhibitor trial I was planning to go on was not right for me at this time, despite all of the set-up we’d already done to work toward it. My disease is in too much of a flare right now to risk going onto such a novel therapy with very little data behind it. I need something more tried and true at this moment.
We are instead going with a clinical trial which Dr. O had discussed with me when we first learned from my PET Scan that the Revlimid had stopped working. At the time, he had wanted to keep it “in his back pocket” because we knew that it was something that would very likely work and that we should hold onto it until I absolutely need it and try these other novel therapies until then. I can’t be burning my bridges until necessary. Options are few and far between. Well, now I need it. We need to melt this current disease.
Next week I’ll be starting up on a trial at Columbia that combines Brentuximab Vendotin (SGN-35) and Bendamustine chemotherapy. I have had both of these drugs in the past, but never in combination, and never at these lower doses. Apparently, his research team has had good luck with using them together synergistically, having put several people into remission. He hopes that that will happen for me as well. We don’t know how long a remission would last, but a remission will give us options to decide the next step and as he says “turn this into a manageable chronic disease.” I feel completely comfortable with this plan.
Monday brings me back to the city for yet another set of pre-tests and consent forms to sign, then I’ll start treatment as early as Wednesday or Thursday. Time to reset everything and refocus on this new “plan”. I’m just so incredibly grateful for that that damn closet door is again shut tight. That shit was scary in there. No more pain. No more fevers. No more vomiting. Just back to my normal aches and fatigue, which I am now oddly thankful for in comparison.