Good Dreams

This morning, before he left for work, Craig told me that he was woken last night to my hysterical laughter. He said that I was still obviously asleep but was sitting up in bed doubled over laughing in the middle of the night. He said he tried to ask me what was so funny and between gasps of hysterics apparently all I could get out was "I can't explain it ... it's just too funny" and would continue on with a mumbled story in sleep speak mixed with more deep laughter.

Many people have witnessed me talking gibberish – sometimes telling quasi-sensical stories in my sleep, but as of late this has been more the stuff of nightmares. For months I've woken up in terror screaming out loud from terrible dreams.

But last night was very different. I have only vague memories of Craig jostling me out of it to try and figure out what I was doubled over about, but no recollection whatsoever of what it was that I found so funny in my dream.

I take this is a very good sign that things are going well.

Holiday Wrap-Up

All of the craziness in my cancer life was made so much more tolerable by the much preferred craziness of the holiday season. I've always loved winter and Christmastime, but this year, especially, the miniature white lights on our tree shone brighter, the cookies tasted sweeter, the hugs were warmer and the music resonated even more deeply.

I feel an incredible amount of gratitude toward my husband, my family (biological and non), my friends, my colleagues and former colleagues, my neighbors, my dog, my yoga instructors ... the world at large. I have so much and there is not a moment that goes by that I don't feel humbled by that.

Since I started living with this disease I feel emotions much more deeply and am much more sensitive to how beautiful and delicate this world is and how important it is to embrace it all with gusto. I do my best to do that each and every day because no matter how tough a single day might be, that day is a gift and it's up to me to choose how to live it – to dwell on the pain or to dance the cha cha with it.

What I like most about the holiday season is that it allows us to reflect even further on those sentiments by being surrounded by loved ones, taking a break from the mundane routine, enjoying longstanding traditions that we hold dear, getting to be a kid again while taking in the spectacle. This time of year fosters a commonality of spirit among loved ones and strangers alike and that is how it should be every day.

Our holidays were simple and beautiful and full of the warmth and the wonderful craziness that only family and friends can bring. Among the many highlights, we hosted our annual "Diamond Holiday Bash," which filled the house with friends from all over – New York, Virginia, Rhode Island, Jersey, Florida. It's something that we look forward to all year and it was so fabulous having everyone there to cheers together over pudding shots and red and green Jello shots, having impromptu dance routines and a few raging games of flip cup. The party spilled into the next day as many of our friends stayed over and we relished in a morning of coffee and quiche while laughing hysterically at the photos from the night before.

I also escorted my brother-in-law, Eric, and nephew, Jake, to Christmas Village, a classic destination in my hometown where families line the street waiting to see Santa to tell him their wishes then explore the toy shop, wave at the elves and check out the reindeer (including Rudolph) in their outdoor pens. I say escort because I used to in fact be an insider at the place having spent many Christmases making some holiday cash as Skippy, Tippy or Elmer the elf, dressing up in full garb complete with a white beard, gold spectacles and painted eyebrows, greeting (or frightening) kids and making toys all day long. For real. As Jake is just 16 months old, we skipped the Santa hype and went straight for the ancillary excitement, which left him with a gaping mouth.

On Christmas Eve, Craig, my parents, sister and I went to visit my nearly 92-year-old grandmother at her nursing home. Her Alzheimer's has progressed immensely and it was difficult for her to stay awake for our visit or to formulate a complete reply. Her eyes would spark up when we spoke of my late grandfather, of our old holiday traditions at Red Lion Inn in Stockbridge, or of the traditional Italian fish Christmas Eve dinner that she would cook.

I am not sure if she knew who I was, but did my best to let her know how much she has meant to us. I showed her pictures of Sammy on my phone and we all shared stories and complimented how amazing she looks. When we left she said how very good it was to see all of us and that melted our hearts.

We then pigged out at Lotus Blossom, a Chinese buffet in my hometown of Torrington, CT. It was amazing. My sister and I each donned a pair of reindeer ears, which the waitresses got a kick out of as we pranced between plates of sushi and General Tso's chicken. Then despite my protests that the place is a raging fire hazard, Craig, Kristen and I went to the famed Christmas House in Torrington while my parents attended Christmas Eve mass. There is not one centimeter of surface area, outside or inside, that is not covered with some kind of light fixture, miniature village ski house, holiday chotzkee, revolving doll, Coca Cola Santa memorabilia or animated elfin figurine. It's a must-see obviously. The creepy wow factor is immeasurable.

My brother made it home and as has been the tradition in my family since I was a baby, we kids opened our Christmas Eve presents together: always fantastically whimsical holiday PJs then snuggled in to listen as my father read 'Twas The Night Before Christmas. I savored every word and every one of my father's wide-eyed expressions with a lump of happy tears in my throat.

Craig and I then gathered with many of his friends from childhood who all descend on our longtime friend Tony's parents house in Harwinton. Everyone rolls in after 10pm (so past my bedtime these days, but remember, I was on steroids through all of this!) and we toast a Happy Birthday to our friend Ernie, who turned 30 this year, so it was a big toast to say the least. It's because of this group of Harwinton boys that Craig and I were brought together and grew to end up together. They, and their ladies, are an amazing group of solid friends.

Christmas morning was spent watching Sammy open her presents from "Santa" – a fleece lined hemp collar and harness and an indestructible Kong red Frisbee. She took some leaps after the Frisbee in the snow and flailed it around in her teeth like it was a piece of raw meat while running laps around the house. We think she liked it.

Then the three of us traveled to Harwinton to cook breakfast for Craig's mother and spent the morning visiting with her. She told us of the moose sightings she's had, of the oxen that have gotten loose and been staring into her window, of the many, many feathered friends that have chosen her feeders to perch on. While there, we witnessed a huge flock of long necked turkeys gobbling through the yard. Yes, Craig grew up in the boonies. It's quite a beautiful place.

That afternoon it was back over to my parent's house, just 15 minutes away in the "city," where my grandmother, two uncles and one newly minted Aunt, my siblings and my brother's girlfriend had all gathered. This is my entire extended family. I don't have any cousins and both my grandfathers have passed, so we're a small crew.

We elbowed in around the table and enjoyed a traditional delicious meal of antipasto and lasagna and meatballs cooked by my mom. Presents were exchanged, lot of laughs shared and it culminated with a heated game of "Left, Right, Center" of which I was victorious and came home with $13 worth of quarters.

It was a day of warmth and lots of love. There was no talk of worries about things to come or whining about what the family has been through this year. Both my grandmother and I have been fighting our own cancer battles over this past year and beyond and because of that there is just a pervading sense of gratefulness and appreciativeness for all that we have. Not in a somber, but in a celebratory way.

Christmas continued the following day with the annual gathering of Craig's extended family on his mother's side. His cousins were home from Africa and Ohio and in addition to Jake, his cousin's children were there, one still so little he fit right into my arms like a hot sack of potatoes where he nuzzled into my sweater on the couch. Watching them all play together with their new toys was adorable. Always entertaining was the $5 limit grab bag ... imagine the treasures we open. Even more entertaining is the "Rebate Box" that Craig's ever thrifty grandmother unloads each year after collecting free things all year long. We all wait yearlong to stock up on shampoo, deodorant, toothpaste, extension cords, heating pads and all of the other oddities that she somehow manages to score for free.

Though it falls first in the December calendar, Hannukah celebrations came last this year. We celebrate with Craig's extended family on his father's side. We lost Craig's dad to brain cancer six years ago and miss him dearly. It is important for us to honor the Jewish traditions and stay close with the Diamond side of the family to carry on his life through Craig and his brother, Eric. The Diamonds (Craig's Dad was one of five) are a boisterous and entertaining group to be around and we love when we get the chance to catch up with all of them. The party house in Upper Saddle River, New Jersey was full of love and laughs ... and calamari and latkes.

There are lots of cousins and that means lots of rousing games of Malarky. I happen to be awful at that one as I am a horrible liar, so I opted out, but thoroughly enjoyed observing. I loved catching up with the girls that are now in college and hearing about their exploits. Craig's aunts and uncles always have great stories and good memories to share. We even got to spend time with the incredible talent that is Craig's cousin Lauren (stage name Chevonne Glitzzi) who is currently touring the world as a singer/dancer with Lady Gaga. Yes, the Lady Gaga. Craig and I peppered her with questions, and I couldn't get enough of the stories she has from the road. It's been so rewarding to watch her career explode with success. And she remains so sweet and kind and grounded and willing to indulge me.

Although Christmas day wasn't white, we now have a lot of snow, which is so crisp and clean and reflects the most beautiful shadows. Though I can't go skiing this year (this is considered a "high-risk activity," which I am supposed to shy away from), I have been on many snowy hikes and spent an afternoon snowshoeing with the family. I'll make due ... we did get a set of sledding saucers for Christmas. As long as I bail before trees I think that activity is also permissible.

The Christmas tree is now down and its ornaments put away. The lights have been unraveled from the porch awning and tucked back into their respective Tupperware bins. But I'm not sad. In fact, I am so very happy right now because to me every day is Christmas morning full of the best gifts in the world. Every day I get to celebrate because I am still here. I am still strong. I am still going forward with full awareness and intention in everything that I do. Every day I wake up to the gifts that are my husband, my sweet pup, my beautiful home and I breathe in the essence of it all as deeply as I can.

Thank you to everyone who made this holiday so special. I am so grateful for and inspired by every single one of you. Check out some photo highlights of just some of the beautiful people and surroundings in my life:

(Note: I was cameraless for Craig's mom's side of the family so they are missing at the moment:(. And, I'm always so obsessed with taking pictures of Jake that I don't have any holiday photos of his parents, Eric and Rachel. It doesn't mean I love you any less! Thanks to Emily Sidoti for the Hannukah photos and Krista for the pix from Tony's house!)

SGN-35 Treatment One

The apprehension was much worse than receiving the drug itself. I must confess that I was a wreck during the 24 hours leading up to my first infusion of SGN-35. I had visions of the drug hitting my bloodstream and instantly causing a seizure of mass proportions, of sparks shooting out of my eyes, my skin changing to putrid colors of green, my eyes rolling back in my head and foam oozing out of my mouth. My imagination was out of control. I have never been so on edge. This led to a few mental and emotional breakdowns and a final goodbye, worried that I really wasn't going to make it, to my husband. We were both snippy, on edge, tearful and angry and worst off, didn't know how to express it to each other. And we didn't realize this until after it was all over and done with and low and behold, everything was fine.

It turns out that none of the bad things my mind imagined happened and all of that turmoil was for nought. In fact, the infusion was quite uneventful and we sighed a huge collective sigh of relief along with the chemo nurse. There were no fireworks or frantic nurses coming at me with defibrilators. I almost felt a little gipped. Maybe I've seen too many episodes of House. How could I not imagine these things, however, knowing how advanced this medicine is and how it is unlike any other kind of chemo that I've had. I just imagined all of these stealth missiles rapidly flooding in and attaching to the proteins immediately blowing up all the cancer cells at once. I didn't think my epidermis could contain all of the action. Turns out, I was fine. More than fine, I've felt no effects whatsoever.

In total, the entire December 30 ordeal took seven hours of travel and six hours of waiting all for a 30 minute drug infusion. Craig and I rode the train in with his school's art teacher and her husband enjoying creative and interesting conversation about books, arts, holiday traditions and the intrigue of serial murderers. This was a welcome, welcome distraction as had it not been for them I likely would have been pacing up and down the train cars.

The line for vitals checks at Sloan was incredibly backed up and only added to my intense anxiety. We met with Dr. Moskowitz to go over final questions, sign the consent forms for my personal study and for her to check me over and give me the go-ahead. Again, she was so blazze about everything that it put me a bit at ease. I don't even have to go in for blood work during my two off weeks. I have no medical obligations until the next infusion, scheduled for January 20. She smiled and told me that I could have some slack on my tight leash. This blew my mind ... . I only have to call if I'm having complications or odd symptoms. This is such an extreme shift from what I've been used to for the past nearly two years. As Craig said: "See, you're not going to die today."

I was sent for a quick baseline EKG as part of the study protocol then it was to hurry up and wait while the chemo was mixed. We now know enough to just give the attendant my cell phone number and go out for lunch rather than sitting in those chairs for multiple hours. Plus, I had lots of nervous energy to burn.

We were told that it would be at least two hours (it was closer to three in reality), so we went for a walk and grabbed some Mexican for lunch. Nothing like a solid vegetarian burrito to sate a nervous stomach ... . We then settled back into the waiting room and watched some stand-up comedy videos until my name was called.

My infusion took place in a spacious private room with an extremely competent and kind nurse who is currently working with three others receiving this novel drug (or a placebo as part of the double blind study). She accessed my port as has been done so many times before and hung the drug to drip. I thought I would explode in eager fright. There were no pre-meds needed. No anti-nausea or steroids or Benadryl. Just straight to the chemo.

It hit my bloodstream and nothing, nothing happened. I felt completely fine. The nurse smiled and gave me a call button to squeeze should I have any strange feelings. Craig and I settled into our chairs and laughed together at Grumpy Old Men streaming on Netflix. After 30 minutes, the infusion was over. They kept me for monitoring for another hour and when I showed no signs of hives or chills or fever, I was sent on my way.

Still, nothing has happened. I've had no side effects whatsoever. But the kicker is I have developed a whopping sinus or upper respiratory infection. We're treating it as both. Finally I receive a chemo that doesn't knock me out, and I somehow pick up a virus that does. It started with a scratchy throat on Thursday, which I alerted the doctor to, and has progressed into a deep cough, achey joints, sinus pain, and blows of mucus of all colors and thicknesses.

Instead of the party we planned to attend, New Year's Eve was spent driving to CVS to pick up the antibiotic called in for me by the on-call doctor at Sloan. We had confetti of crumbled tissues and noisemakers of the natural kind. But that's okay, Craig and Sammy and I were together and that's all that matters.

As a cancer patient, even a minor cold is treated with alarm. My body can't fight invaders as well as "healthy" people can. I am drowning myself in tea and orange juice, taking steam showers and laying as low as I can. I can't afford for this to blow into anything bigger. I think my immune system already has more than enough work to do. Let's hope this antibiotic will kick this and kick it good.

Research Study for One

Last week, Dec. 23, was a big day and turned out to be a great day. After the much shocking and regrettable news from a few days earlier that my PET Scan was not the crystal clear gem we had hoped for, the news we got from the doctor on this day was much easier to swallow.

My mom and I took an early train into NYC to be able to enjoy some exploring surrounding what would surely be a comparatively short Sloan appointment. I had a lot of energy (and a huge appetite) due to the daily 100mg of Prednisone I had been taking to calm the Hodgkin's symptoms until SGN-35 could be secured. We meandered uptown from Grand Central and stumbled upon the New York Public Library – an institution neither of us had ever explored. We ducked in and I was immediately in love with the ornate arch detailing, the marble columns and stairs, the intricate and stunning paintings that canvased the rotunda ceilings.

We explored a few floors taking in the massive ceiling to floor windows encased in deep mahogany trim, which shed a cool winter light onto the dozens of people that lined the long library tables with their noses in books and study materials. I ran my fingers along the worn cloth spines of Lord Tennyson, Dickens and Tolstoy – faded jewel colors of scarlet and emerald, the titles calling out in delicate gold lettering. I opened a couple to finger the years-worn pages and ingest the deliciously musty smell that only an old book can emit.

Stunning was the holiday tree in the library's entranceway, a towering figure decorated with artificial birds of all colors peeking out from behind Victorian bows and lights. Behind that we stumbled upon a fascinating special exhibition, "Three Faiths," which compares and contrasts the traditions and beliefs of Islam, Christianity and Judaism by looking at the religion's ancient texts, materials and art. It was remarkable to admire these historic printings from the tiniest of Korans to Hebrew texts complete with engrossing hand painted illustrations. From behind the glass encasements, each told a story about the many sets of hands that wore their covers thin, and whose pockets they traveled the world in.

As much as I desired to park it there for the rest of the day, it was time for us to travel to Sloan, back to reality. After bloodwork and vitals checks, we were quickly ushered in to see Dr. Moskowitz. She was proud and impressed and eager to tell us that everything went through without a hitch and that I was the "perfect" candidate to receive the still investigational chemotherapy drug SGN-35 (brentuximab vedotin) on a compassionate use basis.

The drug is manufactured by Seattle Genetics, Inc. This is the company that is putting it into my doctor's hands, agreeing to provide the drug to me outside of a clinical trial setting. Though SGN-35 is currently being studied in clinical trials at leading cancer centers across the nation (including a very small double-blind placebo study at Sloan), the trials are closed to enrollment or I am not eligible for them. Because of this, my team of doctors had to write an individual research study for me, which was approved by Sloan-Kettering's Institutional Review Board (IRB) and the US Food & Drug Administration (FDA).

My progress will be watched closely by all parties. My response and side effects will be watched extremely closely by the lymphoma team at Sloan as I am in fact the first patient that the institution has secured the drug for on a compassionate use basis. The first patient at the leading cancer hospital in the nation. To further emphasize what a small pool I am in now, all of the nationwide clinical trials that have taken place as the drug has been developed total just over 200 patients that have been treated with SGN-35.

This "distinction" obviously comes as a double-edge sword. I feel incredibly fortunate that this science has advanced to the point that it can potentially put a stop to these rapidly multiplying Hodgkin's cells, but wish I wasn't in such a dire situation. I am immensely grateful for the scientists and researchers who have devoted the research time and dollars to an oft forgotten type of cancer, which is still treated with the same front line drugs that it has been for 30 years. There are not many options out there for those that experience a Hodgkin's lymphoma (HL) relapse as I have and it is about time that a drug of this potential will soon be on the market.

About 8,500 people in the U.S. are diagnosed annually with HL and 1,300 of them die, according to the National Cancer Institute. While the disease can be cured in about 70 percent of patients, that leaves 30 percent uncured. This is not okay and this is why more cancer research and more clinical trial participation is needed.

As fascinating as this all is, I would have been perfectly content living in remission after just six months of ABVD chemo. Every single morning I wake up and run back through the entire journey, still not understanding why cancer chose me and why not just any cancer, but an aggressive subset experienced by only very few in the world – the vast majority of us being young adults with the mean age of 31. Should I feel special or shafted?

As I've been repeating to myself often lately: "You can't change the cards you're dealt, only how you play the game." I am playing my hardest and I will come out on top. There are just many, many, many more rounds than I expected.

This next "round" starts Thursday, the second-to-last day of 2010. Craig and I will drive down to Sloan where I'll receive the first infusion of SGN-35. It will drip into my port for about an hour. I'll then receive it again three weeks later. The chemo has a 21-day cycle. After this second cycle, we will check a PET Scan in hopes that it has blasted out all remaining cancer activity. If not, then more cycles will come.

I of course received the list of "Likely" and "Rare but Serious" risks and side effects per usual for any chemo I've been on. The biggest concern that has come up with this drug is peripheral neuropathy, or losing feeling and function in the arms or legs because of nerve damage. Otherwise, the side effects are not expected to be too bad as the amazing part of this drug is its honing capabilities. Instead of blasting every fast growing cell in the body as old fashioned chemotherapy does, leaving the patient ravaged, SGN-35 goes right for the CD30 cells present in HL, inserts itself there and drops a little chemo bomb right inside the cell. The premise is that it leaves the surrounding cells essentially unaffected (only about 15% of non-cancer cells are hit).

The "Patient Informed Consent for Clinical Research: Treatment with SGN-35 for single-patient use for a patient with relapsed/refractory Hodgkin Lymphoma (HL)" protocol I was given by Sloan to review describes the process well:

"While most patients with Hodgkin's lymphoma respond to treatment that includes high-dose chemotherapy with or without radiation, followed by an autologous stem cell transplant, some patients do not. Some patients with a progressive or recurrent disease after standard treatment respond to salvage chemotherapy (a second chemotherapy treatment). However, relapse remains a major problem, particularly in patients with poor risk disease.

SGN-35 is a type of drug called an antibody drug conjugate or ADC. ADCs usually have two parts: a part that targets cancer cells (the antibody, which is a protein that is part of the immune system) and a cell killing part (the chemotherapy). ADCs can stick to and attack specific targets on cells. The antibody part of SGN-35 sticks to a target called CD30 (a molecule on some cancer cells, including Hodgkin lymphoma and some normal cells of the immune system). The cell killing part of SGN-35 is a chemotherapy called monomethyl auristatin E (MMAE). It can kill cells to which the antibody part of SGN-35 sticks. More than 200 people with cancer have already been given SGN-35 in research studies. These research studies were done to test the safety and efficacy of different doses of SGN-35."

It's the last question on the informed consent packet that really is the kicker and made me chuckle a bit:

"Are there benefits to being treated with SGN-35?

Treatment may or may not make your health better. We do know that the information from this treatment will help doctors learn more about SGN-35 as a treatment for cancer. This information could help future cancer patients."

No one is making any promises, but the potential really is immense. According to a Bloomberg Businessweek article from Dec. 6, SGN-35 wiped out tumors in one-third of patients with hard-to-treat Hodgkin lymphoma and reduced the cancer by half in another 40 percent, a study found.

Here are a couple more helpful links about the inner workings and efficacy of the drug:

• MD Anderson Cancer Center video interview with Dr. Anas Younes
• Podcast interview with Dr. George Canellos of Dana Farber Cancer Institute

To take a break from all the technical jargon and to celebrate the news that I qualified for this drug, my mom and I indulged in some NYC eats and another dose of culture. We cannot remember the name of the Italian restaurant we found on 57th and 11th, but will never forget the food. We stepped in from the bitter cold December wind to enjoy a three-course prix fixe menu, eating such decadence as gorganzola cheese bread, flaky salmon swimming in lemon and butter with the perfect carmelized crust, and classic liqueur soaked Tiramisu for dessert. It was a ladies' lunch to remember. We clanked our water glasses a few times as we enjoyed the perfect people watching perch at our window side table.

Then we lost ourselves in some mind-bending exhibitions at the Museum of Modern Art. We had acquired some free passes, so the fact that we only had a short time to explore didn't elicit admission fee guilt. Days and days could be spent traversing the place. We only saw a very small fraction, but it was awe inspiring nonetheless. We saw Dalis, Picassos, Seurats, Van Goghs, Monets, Chagalls, and works by many, many burgeoning photographers, painters, and sculptors ... even an exhibition of Andy Warhol film clips and a musician playing the piano from the inside out and backwards while walking it through the performance space. The museum was swarming with visitors taking photographs, leaning in to and stepping back from works, speaking languages of every dialect. It was a regular world melting pot of art lovers and my mom and I couldn't have been more thrilled to be there.

We took a brisk walk back from MoMA to Grand Central navigating through the slews of holiday tourists that packed the mid-town stretch. After sipping our coffees and nibbling our baked goods, my mom fell asleep and I delved into my book as the train rumbled us back to the station where my Dad's warm car waited to take us home. We were content, tired, and exhilarated all at the same time. It was almost Christmas after all ... .

A Very Merry Christmas After All

I only have time for a very brief update. This time, not because I'm in and out of hospitals and procedures, but instead, in and out of holiday parties and gatherings. I much prefer this.

In short, my Christmas wish was granted. SGN-35 figuratively appeared under the tree this year. I am relieved, pumped, hopeful, grateful and eager to get started. The study that Dr. Moskowitz wrote specific to my case flew through the institutional and FDA approval process and all agreed that my case warrants this still experimental drug to be released to me on a compassion basis.

I will have my first infusion of SGN-35 this coming Thursday, Dec. 30. I'll have two weeks recovery, then another infusion, then we check a scan. There is potential that it could put me into remission as quickly as after two cycles. Then, we move right into transplant.

More details to come. Right now I'm just riding a high – a high of holiday cheer, anticipation, and most predominately 100mg of Prednisone steroids.

Best. Christmas. Ever.