|Taking it all in at Rainbow Vista, Valley of Fire, Nevada|
I’m back home in Connecticut after slews of wonderful traveling. The trip out to see my sister in her Las Vegas, Nevada element finally happened after her living out there for a year and a half. That my parents and brother could be there too was an incredible bonus to be able to have that time as the Dubreuil family. The fact that it all tied in with a childhood friend’s wedding in Malibu and that Craig and I got to spend a weekend in Los Angeles with each other and several more of our Connecticut friends and Craig’s adopted second family since childhood? This was an even bigger stroke of serendipity. All worked out so well.
It was an incredible trip full of beauty of all kinds. Did I feel like a million bucks the whole time? No, of course not. But I live on a different wellness scale, and I was thrilled and proud and astonished and how well my body did with all the activity. The reason I went back and had a PET Scan on the Friday before I left on vacation was because I had three nights of soaking night sweats and was having a lot of chest discomfort. This prompted an emergency visit and scan though I had just returned home from New York City after completing radiation on that Wednesday. Because I was planning on going away the following week, we needed to assess what was going on. As I wrote in my last update, the PET Scan looked overall pretty good; the clean areas on my sacrum and spine no less than astonishing. It wasn’t consistent with how I was feeling.
Those feelings may have just been effects from the radiation and coming off a med. The radiation gave me extreme esophageal irritation to the point where even a glass of water hurt to swallow. I had never felt that before and my hope is that I misinterpreted that chest discomfort to be lymphoma creeping in at a rapid rate, because it’s not.
Dr. M wasn’t thrilled at the idea of me traveling without starting a treatment, nor being too far from her care while on a new treatment, but thoughtfully considered all the options with me. What we decided was to keep me on the course of 50mg steroids that I had been on since Feb. 27, just before starting the radiation to help control inflammatory pain I was having. I would also remain on prophalactic anti-fungal (Fluconazole), anti-viral (Acyclovir), and anti-bacterial (Bactrum) antibiotics to ward against picking up any sicknesses. Prednisone is known to work against Hodgkin Lymphoma cells and is used in many common Hodgkin chemo regimens so the steroids would work to keep any lymphoma growth at bay and maybe even have some anti-lymphoma cell effect in and of itself.
Prednisone is also known to give the shakes, make the heart race, make people feel cracked out, bug-eyed, emotional, super, super stinky gassy, bloated, swollen, starving, weak-legged, with super demi-God amounts of energy. So, in some regards it served me well by giving me the energy I needed and masking any kind of pain or allergies or inflammatory fighting happening in my body. It took away my GvHD mouth growths, but it brought in a bad course of thrush.
So I took the good with the bad. By the Nevada leg of the trip however, side effects settled down. My esophageal pain completely went away and I could once again eat. I had just one episode of bad muscle cramps in my legs. I’ve been getting these on and off since I’ve been on the Prednisone. They start as bad Charlie Horses and can stay just in my feet or sometimes run right up my lower leg. I’ve read from others that this also can be caused by long-term use of the steroids, which can weaken the leg muscles.
I did tons of hiking, walking, biking over the past month so am not at all concerned about long-term atrophy and have been very conscious of hydrating and potassium consumption to keep the cramping at a minimum. The only day it happened was after three miles of hiking in Zion National Park. My family got to hear me dropping F bombs in the back seat of the mini van as I rode out the pain while my toes went ridged and uncontrollable. They encouraged me to yell and cry as I followed it through. A lot of “Son of a Bitch”. “Fuck.” Screams. Massaging. A little ice and it was over after about 30 minutes.
Again, overall I’d say I fared pretty well. I did not feel physically limited at all on this very active vacation. My lungs are incredibly strong, my endurance is probably the best it’s been in my life. My upper body and back are still pretty weak and I am gentle with them, but I wasn’t sweating nor puffing like many of the tourists we passed on the trails. No one would have guessed what I’d been through less than a year ago … and for two years prior. I don’t even believe it.
There were many emotional moments had along this trip, lots more self discovery and discovery about my family, my husband, my values, my love of nature and freedom and openness. Now I am back and I can process and am so happy to be in our beautiful home seeing it with even more appreciative eyes. I am in a very good place right now. Ok, enough. This is a sneak preview only.
To get up to date, I flew back to Connecticut on Good Friday when Craig picked me up at the airport and we were reunited and rejuvenated. It was wonderful to see him after being apart for six days. The next morning we made the 4 hour trek to Allentown, PA where we celebrated the Passover Seder with Craig’s late father’s side of the family. We went a little early so that I could have a movie date with his cousin Halle that we’d been looking forward to since Chanukah – Hunger Games, what?!?!? Then it was back to Connecticut that night and we hosted Craig’s late mother’s side of the family for Easter brunch at our home. It was wonderful to have his family here. His cousins kids did an egg hunt and Craig and his Grandma whooped at a game of Bocce Ball, while the rest of us enjoyed the warm spring day.
The Monday following was the last leg of travel. I had to head back into NYC to meet with Dr. M to check in with how everything was going and decide on the next steps now that I was back on the East Coast. She is so thorough and thoughtful that we had even been e-mailing while I was away about some different clinical trial options that had opened up at Sloan-Kettering and different options to consider that arose as she talked about my case with more of her colleagues. I spent a couple hours together with her and her nurse Brynn, both of whom I love spending time with regardless of the circumstances. However, it was an unexpected long day (a 17-hour one) which involved a fluke brush fire across the train tracks on the way home that kept our train trapped for hours. Yes, this is a full blog-worthy story. I couldn’t make it up if I tried.
But I left with a very positive feeling and a “plan,” that’s of course always adaptable and changeable depending on how I am feeling. I am going to go on to one of several options of targeted treatment within the month. Because I have had no night sweats this month, have no palpable lymph nodes and no Hodgkin symptoms to really speak of, we have the time to explore a brand new drug. I won’t know for sure if I can get onto the imaging trial until Monday when the lead investigating doctor returns and approves me.
The clinical trial is for a Phase 0 PET Scan Imaging trial of a brand new drug in development at Sloan called PUH71. The exciting thing about it is that its actions can be seen on a PET Scan, so ideally we'll be able to see whether it is attaching to my areas of disease by doing this specialized, controlled series of three PET Scans using a very low dose of the drug as the tracer instead of the normal glucose uptake injection.
After the investigators look at the scan results, we'll decide whether it makes sense for me to use that drug now and jump onto the Phase I trial they have if I can get a spot. Or, if not now, then it’ll be an option I have it in my back pocket for something to use in the future – another key to try. I have the flexibility to do it now as I'm not in crisis mode, so it makes sense to do at least the imaging piece. At the very minimal, I’ll be helping to advance the science of PET Scan technology, hopefully making it more accurate for future patients. I have to get scanned anyway, why not contribute to research?
Either way, I'm going to go on some type of therapy by the first week in May. Possibly back to the targeted therapy Everolimus that worked well for me in Houston before transplant and is now available at Sloan. Maybe a couple more Vinblastine injections? Maybe back to SGN-35? Maybe onto the Phase I drug? There are many options that offer a pretty normal life while on them. There is no need to take out a bazooka blaster right now and knock me down to zero. There’s not a lot to blast. We’re just doing a little more maintenance to the areas we left untreated while radiating. The radiation took away my dangerous trouble spots and my new immune system has been working against other areas, now it's just dealing with some little areas of involvement in my abdomen and chest, which don't seem to be causing me any symptoms nor putting me in danger right now so I'm loving being off of treatment and clear headed once again.
I have also started a slow taper off of the steroids, which will last about three weeks. Dr. M has me dropping very slowly to keep my body safe. After being on steroids for almost two months the body becomes reliant on it and stops producing hormones of its own so we need to be careful as we wean me off. I’ve dropped down by 10mg and in has snuck a lot of lower back pain and hip pain that the steroids were likely masking for me. My energy is reducing, but so is my swollen moon face, my gassy assy, and the shakes, so all of that is good. It’s all about getting into balance again.