SGN-35: Second Try

Contrary to how long it's been since I've updated, I am still blogging. Life has become very busy – a good busy – and kept me away from it, but I miss it and look forward to coming back. But full-out blogging will have to wait another week as tomorrow I fly to the Outer Banks in North Carolina for five days at Surf Camp with an incredible organization that offers adventure camps for young adult cancer survivors: First Descents.

In ultra summary fashion: I started SGN-35 on May 18 after my PET Scan revealed some new areas of involvement and some reduced areas (not yet clear enough to go untreated). Since then I've had two doctor-visit-free weeks of bliss. This week will be my last week of freedom before my next infusion, which I'll head back to NYC for the day after I return home from my adventures.

Except for some fatigue and fogginess a couple of days after the infusion, I've had virtually no side effects. I've been feeling better than I've felt in a very long time. When I say life has been busy, it's been busy with barbecues, kayaking, gardening, a Dave Matthews Band concert, stand up paddle boarding on the river, birthday parties, working out with LIVESTRONG at the YMCA, and even some small and greatly satisfying reporting and writing projects for work. I'll take that over hospital visits and endless bloodwork appointments any day. I am relishing in this freedom and newly recaptured strength.

Tête-à-Tête-à-Tête

My Sloan-Kettering peeps: Dr. Sauter's nurse, Heather,
Dr. Moskowitz, me, and Dr. Sauter - the dream team. 

I have been home and feverless since last Thursday when I was discharged from the hospital. We figured out what the cause wasn’t, but not really what the cause was. But I’m feeling better and that’s all that really matters. I was ballooned up with almost three days worth of heavy-duty IV antibiotics, IV steroids and lots of IV fluid in hopes of flushing any kind of infection out. No bacteria grew in my blood cultures. My chest and lungs are clear. There is nothing out of the ordinary in my blood work, except for that incredibly high sed rate, indicating high volumes of inflammation in my body.

I got the sign off by the medical, oncology and infectious disease teams that were overseeing my inpatient care and was sent home with instructions to call if chills and fevers again broke in. Despite trying to get out of my previously scheduled appointment, my doctors at Sloan really wanted to see me in New York City on Friday. I was desperately tired on Thursday after finally getting home and couldn’t even fathom a trip to the city, but they assured me that they could see me at whatever time I could get there. They are ultimately the ones who I’ll be working with to decide my next steps – and the ones who watch me so closely and frequently, so I knew that in the end it’d be worth the trek for them to inspect me and weigh in on what might be happening.

My parents took the day off of work and my dad drove us into the city so that I could catch up on all the lost sleep coming off of my hospital stay. I didn’t really sleep, though. I was more cranky and delusional, kind of like when I used to ride in the back seat as a toddler I imagine. We sat in a lot of traffic, which only made me angrier. But we got there, as we always do. I was too impatient to wait to park the car so jumped out on York Ave and made my way into the hospital and up to the physician suites grumbling.

Three Years Later

How appropriate that today is the third anniversary of my cancer diagnosis: May 8, 2009, and I’ve spent it in the Emergency Room and now as an inpatient at Hartford Hospital – the hospital at which that diagnosis was discovered. This is certainly not where I thought I would be three years later. It’s frustrating. It’s defeating. It’s confusing. It’s angering. It’s exhausting. I’m doing my best to focus on the fact that I am still here, that I am still living my life despite what this persistent disease has tried (and failed) to take from me, but it’s hard to keep that focus. This year, more than past anniversaries I admit that I’m angry and resentful. The fact that I’m in the hospital on this day is just insult to injury.

Just last night I said to Craig that I am never going back to stay in a hospital and that he’d have to drug me up significantly to get me there and my mom was comforting me by saying that even though I was feeling so awful, at least I was able to heal in my own home. Well, to all of our surprise, here I am, and I won’t be released until they figure out what’s going on with me. It’s funny how a fever of 103 degrees, writhing chills and a morning full of vomiting quickly changed my tune on the Emergency Department visit. I nearly collapsed at its doors desperate for help to make me feel better. I also came uncomfortably close to vomiting on the triage nurse.

Treatment Update: CEP

The weather was ridiculously gorgeous last week and helped
off-set the painful times. A nap in a hammock is tops for healing.

I did not end up going on the PUH71 drug trial, nor even undergoing the Phase 0 PET Scan imaging part of it. My timeline did not sync with that of the investigating doctors. It would have delayed my treatment for too long. It may work out in the future, but not now.

Instead, I’ve started a chemotherapy regimen of three oral drugs: Cyclophosphamide, Etoposide, and Procarbazine. They are each traditional chemotherapy drugs with a proven track record for going after Hodgkin Lymphoma cells. I’ve taken these drugs in the past as part of other regimens but at much higher doses, mostly as part of my brutal autologous stem cell transplant prep. I’ve taken just about every proven anti-Hodgkin drug so now we have to revisit what works and new ways to administer it – as well as continue to explore new, novel therapies being developed that give a better quality of life while enduring treatment.

What’s special about this regimen is how it’s administered. A mentor of my doctor who works at another city hospital conceived the premise. The research and results have shown a lot of promise as a long-term maintenance chemo. For seven days I took each drug once a day at different times a day. They are all taken as a low-dose 50mg pill with a glass of water. I took the Cyclophosphamide after lunch, the Etoposide after dinner, then the Procarbazine right before bed (as it causes a lot of nausea, hence why I’d bring a loaf of bread up to bed with me for middle-of-the-night stomach aches).

The theory behind this drug administration schedule is that we’ll keep surprising the Hodgkin cells. Like, “Oh, you think you’ve got cyclophos figured out? We’ll bam! We’re going to hit you with Etoposide. Then, uh-oh, here comes Procarbazine.” We’re continually coming at the disease in different ways throughout the day so as to not give the cancer cells a chance to morph around any one of them and continue to grow. We’re working on eliminating the diseased areas with timed stealth attacks.

Peppe's Eyes

I wrote this piece for Syllable: A Reading Series' April call for submissions. The theme was "Light." The direction writers could take was completely open – creativity encouraged. When I read the theme, my grandfather, Peppe, immediately came to mind and this piece sprung from there. For me, he is synonymous with light. I live to carry some of his within me every day since he passed in 2008. 

I was scheduled to stand at the mic and share this as part of the reading series at La Paloma Sabanera coffee house in Hartford this past Wednesday, but I took a big nosedive physically after some changes with my steroid and chemotherapy meds and just couldn't make it. I don't think my legs would have held up, never mind my exhausted head. I was disappointed to have missed hearing how other writers interpreted the "Light" theme, but am glad that I can share it here to give a little glimpse into the magic of my very special Peppe. 

-------------------------

Peppe and 3-year-old Karin no doubt
planning some winter's night indoor adventure

My Peppe’s eyes were the lightest of blue, so faint and lucid that the thought of the harsh sun shining into them made me squint my own.

The color lives on in the faint, cool blue light of my brother and sister’s eyes – striking and piercing in their dramatic subtlety. My eyes are a deep hazel, a stark contrast to the translucent eyes of my siblings. 

Light was always glinting off the pale blue eyes of my grandfather, bouncing off the collection of moist tears that permanently swam in the crinkles around his eyes. Light also caught the white crust that would collect in the corners of his mouth ­– the constant spittle that old folks tend to carry in their lip folds.

Visible Ink Reading of Patient Works at Sloan-Kettering

On Monday night a lifelong dream was fulfilled for me. A piece of my writing was chosen by committee this past December to be published in the anthology and staged at Visible Ink's Fourth Annual Reading of Patient Works – a writing mentorship program for patients treated at Memorial Sloan-Kettering Cancer Center. My piece "Kitchen Charades" came to life on stage amid a beautiful, intriguing, funny, heartwarming, emotional program of 18 pieces focused on a wide variety of topics written by Sloan-Kettering patients and performed by actors with Broadway, Off-Broadway, film and television credits.

The funders, volunteers, and coordinators behind Visible Ink hosted an incredible evening. The auditorium was full and even more viewers filled an overflow room where they watched the performances on screen, giving us writers and actors an audience of more than 500 people. My piece was the final act, nothing like the pressure of being the closer! It was a surreal experience to hear my words being read by someone else, the scene they describe being acted out hilariously before my eyes, reliving it all in my head, and hearing the audience's immediate response – which I'm proud to say was roaring laughter, including my own, as the actress portraying the Turkish woman was spot on with physical comic prowess. I had no idea what to expect and was so impressed and thrilled with how they staged my writing.

My wonderful husband and parents were there to support me and together we toasted and enjoyed a wonderful reception afterward with delicious gourmet appetizer bites from fig and fontina stuffed phyllo dough to smoked salmon toasts, wine, and Crumbs Bakery mini cupcakes of every creative flavor.  I had the opportunity to catch up with my mentor, the founder of the Visible Ink program, author Judith Kelman and meet the actresses and the talented director/choreographer, Greg Kachejian, who brought my piece to life. The whole night was humbling, rewarding and awe-inspiring.

The final text of the piece is pasted below the photos. It was based off a blog from this past summer that I reworked. A professional video of the entire program was filmed. As soon as it is posted on Sloan-Kettering's website, I will post a link here on my blog.

Eager to be part of the audience. The auditorium was full and others watched from an overflow viewing room. 

7 States.13 Days. Back Home in One Happy Piece.

Taking it all in at Rainbow Vista, Valley of Fire, Nevada

This is one of those get-everyone-up-to-speed blogs to update my health and life status, as I know so many of you care and are wondering what is happening. Then, I will backfill chronologically with the huge backlog of blogging I have to do. So – like it or not – you’ll be reading a lot from me from now on. I have much to share and many stories ready to burst – about my cancer treatment and life otherwise.

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.