Things have been all quiet on the cancer front. Quiet in the sense that there have been no spiked fevers, no ER visits, no scary symptom onsets, no shortness of breath, no loss of feeling in my limbs. I've been a No Drama Mama. In fact, I've been incredibly busy taking advantage of this "feeling good" time. I know that it will be short lived so I am sucking the marrow out of every minute of it.
The sun has been shining lately and the gutters and roof corners of our home are no longer jammed with thick beds of ice. Though I admit they were foreboding, I do miss the massive icicles - some literally six inches wide and five feet long that hung from the eaves. Hopefully Craig won't have to balance on the roof with a long shovel anymore or attack the real nasty stuff with his hammer and ski goggle eye protection. The path to our front door has actually melted so much that it's revealed the yellow, straw-like grass that had been gasping for air underneath it for all of these months. Sure, the path is flanked by snowbanks that are still the height of three, Sammys stacked atop each other, but there is a hint of spring nonetheless. Earlier this week it was 54 degrees ... such a drastic change from the below zero temps we'd been feeling. Sammy and I hit our trail for a snow shoe and on the way back down the hill I had stripped down to just a sweatshirt. I can't remember the last time I had dared to let more than a sliver of face be exposed to the painfully cold air. It was glorious here in Connecticut, and apparently will be so for the next few days. It's a good time to be feeling good.
This relative "warmth" was only a pipe dream last Thursday when Craig and I drove down to New York City for my third infusion of SGN-35. The brief transfer time from warm cab to hospital entrance was enough to shrivel our lungs and frighten our arm hairs even underneath their protective layers of fleece and thermal. It was another early appointment so the morning sun hadn't yet had its chance to enter the temperature battle, though it didn't have a fighting chance anyway.
After a vitals check and a finger prick to analyze my Complete Blood Count (CBC), Craig and I got right in to see Dr. Moskowitz. It was exciting to celebrate with her and my nurse, Brynn, in person about the good news that my PET Scan showed. She explained that in the terms laid out by other SGN-35 clinical trial studies, I would already be considered as having an objective response and are that we are now working our way toward a complete response with at least one more (a fourth) injection of the drug.
Everyone involved has been so pleased with how this drug has truly been able to target and blast the diseased cells within me. I myself am pretty psyched out of my mind about it. And now I know why my body has collapsed with tiredness at certain times of day. There's a lot going on in there. The drug has worked so well that it's getting very close to FDA approval so that it can be in the hands of many more needing and deserving refractory HL patients. It now even has its official drug name on the IV bag: brentuximab vedotin. It sounds just as menacing as the rest of those villainous chemotherapy names (vinblastine, bleomycin, decarbazine ... .), so I'll continue to refer to it as SGN-35, it's much more fitting in my mind.
I had brought along yet another sputum sample of those juicy little organs I've been blowing out, coughing up and gagging about. After further analysis of the last treat I brought in to the medical team, it seems that they are not of concern ... just my body clearing out. Unthreatening or not, I did bust Brynn holding it up in the air while it captivated the attention of a group of nurses huddled around my specimen collection bottle in awe that someone could produce that. She laughed when Craig and I came out of the exam room to walk in on the scene and said:
"Isn't it funny, I have my morning coffee in one hand and your sputum cup in my other."
I told her not to mix those up. Craig told her not to mistake the little guy for a banana chip.
The chemo mixing wait wasn't bad as Craig and I killed most of the time at our favorite bagel joint across the street. Best. Cream cheese. Ever. The reduced wait time is a big benefit of 8 a.m. appointments. At that time of day, there hasn't been the opportunity yet for the inevitable wrenches to be thrown into the days of the doctors and nurses which set everything back in the variable, fluid world that is cancer care.
My chemo nurse had a beautiful Irish brogue, which she said has lingered since she left there 17 years ago. She was so kind and very calming. She had just read the book I had in my lap, "The Help," so we swapped commentaries on that and also the Stieg Larsson series.
Once the IV bag of drug began dripping, Craig and I played some mean games of air hockey on the iPad and we perused the menu of a local gourmet prepared foods shop off of which we ordered our Valentine's Day dinner to be picked up the next week. From port accessing to Heparin flush and Band-Aid placement, the process took less than 45 minutes. In fact, it went by so fast and I was so focused on protecting my goal from Craig's puck that I forgot to take a single picture. I have no documentation for the first time in more than 100 chemo infusion sessions. However, it's probably safe to guess that it looked the same as every other one. Me in a chemo recliner next to a pole with a plastic line running from a bag to my chest. The photos are pretty interchangeable.
We left the oncologist's office with a "plan" of next steps (In my writing, the word "plan" will forever be protected by a quotation mark embrace). I will go back to Sloan-Kettering on March 3 at which time I'll check in with my lymphoma specialist Dr. M and get a fourth infusion of SGN-35. I'll then head right over to Dr. Sauter's office. He's my transplant doctor, now coming back into the picture after waiting in the wings watching the drama that's been unfolding and folding again.
The last time I saw Dr. Sauter and the transplant team was this past September - nearly six months ago - when I was one day away from entering the allo transplant protocol and we all discovered that the cancer had again returned. Needless to say, I'm going to need a refresher course and by rule we're going to have to go through all of the pre-transplant testing and logistics again. We'll get that process started on March 3. We'll check another PET Scan around March 17 and if (when!) it shows an all-clear response, we could move into transplant pre-chemo and the subsequent long hospitalization/isolation as early as the following week. Like, woah.
Somewhere during all of that we also bring my sister, my donor, back into the picture and she'll again have to go through all of the bloodwork and bodily function tests. Not to mention the Neupogen shots and the retrieval of her stem cells ... . This comes just as she secured a dream job in the Spring Mountains as a Crew Supervisor for the Nevada Conservation Corps/Great Basin Institute and will be moving to Las Vegas 18 days from today. Let's just say she'll be racking up some frequent flyer miles traveling from East to West Coast and back again. We're repurposing the title "The Sisterhood of the Traveling Pants."
Since my latest infusion I've been feeling relatively well - more than well, I'd say fantastic for being on chemo treatment. I've had some spotty heaviness, numbness and those strange coursing blood feelings in my left side again. I've had a lot of bladder irritation, which involves incredible frequency and little spasms (now forever documented as an SGN-35 side effect that I "discovered"). I've lost all but about six eyelashes - four remain on my right eye, two on my left. And of course, the fatigue is always there. But all of that is a pleasure cruise compared to other chemo regimens.
Even with those symptoms, since last week's infusion, I've gone out to dinner three times; saw my favorite musical, Rent, for the sixth? time courtesy of mi mama; walked in the Cupid's Chase 5K with my childhood best friend, tore up the dance floor at a wedding reception with amazing friends; celebrated my grandmother's 75th birthday; practiced much yoga; remastered the art of napping; snowshoed our ridge line; lunched and learned with a famed and accomplished author; celebrated not only Valentine's Day, but 11 years of dating my husband; and am set for a husband-wife roadtrip to the Washington, DC area tomorrow to spend the weekend with my college roomie and her husband.
I have no complaints and feel so incredibly grateful and fortunate every single day. I'll continue to live and rock hard right up until transplant time when I'll have to tap the brakes for a while. I'll never stop trucking forward, I'll just be navigating heavy traffic for a few weeks, forcing me to roll at a much slower pace.