Today I am thankful to be able to honor the fragility of life. Because of that humbling awareness, I am grateful for every single person and moment in my life – from the patch of sun across our living room floor that welcomes each morning to the sight of my adored husband and dog cuddled and snoring together on the couch.
I am grateful for this life, today and every day that I get to live it.
Happy Thanksgiving to you and your loved ones. My wishes for a day of warmth, laughs, and the recognition of miracles all around us. Thank you for helping me to realize the power of the human spirit. This blog and its readers are such a gift to me. Please continue to direct that spirit to Craig's mother as she endures a most difficult time and hope for peace for her.
Thursday, November 24, 2011
Sunday, November 20, 2011
It's been a while and much has happened. I had the biopsy procedure of my right sacrum performed at Sloan-Kettering. The pathologists have read the sample and confirmed that yes, there are the telltale Hodgkin Lymphoma Reed Sternberg cells present. It's the same disease trying to flare again, now most certainly in my bones. This wasn't a surprise to anyone, but it does help the situation to know we have some hard pathology evidence of the disease we're trying to go after.
The biopsy procedure was not fun, this is certain, but it’s over, and I was fine after just a couple of days of swelling and soreness in the area. There were many hours – way too many hours – spent waiting and fasting before the procedure. I had to fast from midnight the night before until after 4 p.m. when I came to from the twilight sedation. It was a long day in the city. The surgeon went in with a needle and bone hammer and extracted a piece of the bone and marrow where disease looked to be involved, pinpointing the area with live CT Scan technology. The surgical team gave me medication to relax me, but I was by no means asleep. I played Bob Marley through my headphones and welcomed the anesthesia nurse’s hand that rubbed my arm throughout the most painful moments.
Then came more days of waiting: for results and a plan. Then came more traveling to NYC to solidify that plan, including a solo trip by car and train – liberating! I’ve done an incredible amount of thinking and contemplating and talking out options with my family and medical team, but mostly with myself. I had to ask the really difficult questions to my doctors to be able to get things into perspective here. They’ve been realistic and gracious and I could not be more appreciative to have the individuals that I have in my corner.
It took me a few weeks to get to this point, but right now, that CT Lottery tagline: “You can’t win if you don’t play” keeps coming to mind. So does the Wayne Gretzky quote: “You miss 100% of the shots you don’t take.” There are still shots for me to take and I can still win, but I have to play in order to do so. Playing will not be easy and the idea of more treatment is deflating, but it beats the alternative. To be very blunt, if I don’t play, I will die. This lymphoma will begin to become very painful and it will kill me.
In black and white, the risky treatment might kill me; the cancer will kill me. I’ve decided to hedge my bets. Because there are areas of cancer on my vertebrate, it eliminates my hope to be able to ride this out for a while longer, to “wait and see”. If I want to maximize the effectiveness of my current options, I need to act now. There is still hope for this donor transplant process to work – we just have to poke it a little bit.
I am reluctant to have more toxic, traditional chemotherapy and have exhausted most of those options anyway having been so heavily treated. I do not want to send my body into tremendous trauma again, and because of constant scientific developments I hopefully will not have to.
Gratefully, there is a promising option and I have decided to embrace it. I’ve started a targeted therapy drug, Revlimid (also known as Lenalidomide). It is an FDA approved drug used primarily against Multiple Myeloma. However, there have been recent and ongoing studies of its efficacy against refractory Hodgkin Lymphoma – even after donor transplant. It has shown some promise in these studies, and I’ve connected with a couple of other refractory HD patients who have had great disease reduction results with it. The best part is that because it is a targeted therapy, the side effects are said to be minimal. So far, this has been true. I’m a little more tired and more easily winded, but that seems to be all.
The drugs were delivered via FedEx to my door. It is an oral pill that I have been taking once a day and will continue to for the 21 day cycle, one week off, then a second cycle. After two cycles we will check a PET Scan to see the progress that the therapy is making against the disease. Because this pill is such a "light," targeted treatment I can be on it for a very long time if needed. It's not like toxic chemo that a body can't handle for prolonged periods.
In some post-allogeneic transplant patients, Revlimid has actually pushed them into some mild Graft vs. Host Disease proving that the drug may actually have a stimulating affect on the immune system/donor lymphocytes. This possibility makes the therapy even more ideal because not only will it be going after the small amount of lymphoma I currently have, but it may also ramp up my newly donated disease fighting cells: a win-win.
The hope is that the Revlimid will reduce the disease tremendously and will allow me to go forward with the Donor Lymphocyte Infusion with a super blast of my sister’s disease fighting cells. That procedure of course comes with the risk of mild to severe Graft vs. Host Disease, but also the only promise for long-term remission. I’ll revisit that decision when we get to that point. Right now, we’re working on getting the lymphoma under control while keeping my quality of life as high as possible.
Life has been very emotional in many respects – tough moments but also beautiful moments. I am feeling mostly well and I can do most everything again. I’ve had nearly five months without chemotherapy treatment and much healing has happened during that time. The freedom and confidence that allowed has done wonders for my spirit. My limitations will increase some again once this new drug begins to affect my blood counts, but it shouldn’t be anything extreme. I’ll continue to see my lymphoma doctor at Sloan-Kettering once every other week and will have blood work drawn locally at Hartford Hospital’s nearby cancer center every week.
Yes, treatment continues, but my life does too. Living is my focus now more than ever. No more being a full-time, incapacitated patient. I am taking full advantage of my renewed strength and mental capacity. I am still going back to work full-time from home as planned. I start tomorrow and I can’t wait to delve into the projects at hand. I'm working out with the LIVESTRONG at the YMCA program. I am also flying to visit my sister in Las Vegas for a few days and very much look forward to seeing the desert and mountain landscape out there: one night we’ll be camping in the Valley of Fire, another we’ll be taking in the Vegas strip. Maybe I’ll just put it all on red?
Monday, November 7, 2011
Two days after getting my less-than-desirable PET Scan report, we lost power at our home in Connecticut, along with just about everyone in our state. We had no heat, hot water, lights, internet, cable, or electricity. We remained out of power for 7 days. There are still 45,000 customers out of electricity here in Connecticut and I feel greatly for them: the scenario can be quite frustrating. The timing of it all was impeccable because for Craig and me, it actually provided a very welcome distraction from the realities of the news that I got.
We spent the week in the comfort of neighbors' company with unexpected sleepovers, rotating dinners among all of our houses, lots of laughs and indoor camping. I got good use out of my long underwear and all of our blankets. It was confirmed once again that we have the best friends, neighbors and family.
|Lights out pizza party|
After a long day of doctor meetings at Sloan-Kettering on Friday, Craig and I came home to the beckoning beam of our driveway floodlight and the sound of our neighbor in our basement rewiring the electricity from our generator to our main switchboard. We came in to the heat pumping from our pellet stove and the house whirring with that buzz we all take for granted. It was glorious to be able to sleep upstairs in our bed for the first time in a week, rather than bundled on a couch or air mattress.
The symbolism of it all was kind of eerie. The plug was pulled out of me for a while there, but there is still light. Yes, there is the dark light of hot spots on my PET Scan, but there is also the promising light that is new experimental drugs and a lymphocyte boost. All of that light came flying at me violently twelve days ago when I first learned the news. My friend Meredith's mother, Julie, generously drove me into Manhattan and killed time while I endured my PET Scan then went to meet with Dr. Sauter to go over the results right afterward.
He walked into the room and said: "How's your back feeling?" and proceeded to rub the middle of it asking me if it was sore. I knew immediately what that question meant. He informed me that there were some hot spots on vertebrate on my spine, two new lymph nodes lighting up in my right chest, and that the spot on my right hip/sacrum had grown more prominent since my last scan. In short, it looks like the lymphoma is on the rise again despite my new immune system.