A Lone Journey

When I found out that the allo transplant had been postponed at the end of September and that I'd have to endure yet another chemotherapy course, I had to get away. I wanted to go away by myself. I wanted to be completely anonymous. I wanted to go to a place where no one knew about the cancer that was yet again multiplying in my lymphatic system.

I also wanted to prove to myself that I was still capable, independent, and competent. I wanted the companionship of me and only me. I didn't want to have to talk about anything, to slow any one down or to have to do what anyone else wanted. Anonymity and privacy are hard to find as a cancer patient when you're constantly prodded in every sense of the word.

After I convinced my parents and husband that I wasn't going to off myself, and no, I wasn't going alone because I didn't enjoy their companionship, I went away. Wistfully I thought about hopping a plane to Paris or San Diego, but more practically, I chose my old stomping grounds on the campus of UNH in Durham. As much as I wanted to prove I still had it, I knew that I didn't fully have it together. My mind was pretty fuzzy and overwhelmed with this new development and I certainly wasn't feeling at the pique of physical shape. If it weren't for the course of steroids I had just started, this inflated sense of confidence probably wouldn't have manifested. So I stuck with the familiar.

I booked a room for one at a bed and breakfast in Portsmouth on the seacoast just 15 minutes away from campus. Portsmouth is easily one of my favorite places in the world. I used to escape there often while in college and for two years nannied for three adorable kids there. We'd take walks from their house into the downtown together to get ice cream or their favorite cinnamony baked treats after a day at The Children's Museum. One in the carriage. One riding the back of it and the oldest by my side.

The drive up was extremely liberating – 3-and-a-half hours of windows down, sunroof open concerts of everything from Kenny Chesney to the Rent soundtrack. It had been six years since I'd been back. But before this long gap, I made the trek from Connecticut to New Hampshire many, many, many times before, traveling at crazy hours back and forth to UConn where Craig was at school, surprising him late at night then leaving painfully early in the morning to make it back to the UNH campus for Lester Fisher's 8 a.m. Black Literature course. If you were 10 seconds late, the door was shut and locked. I narrowly squeaked in on several occasions.

Not much about the ride had changed. I-495 is very long and still under construction, not much to my surprise. The toll charges had risen a few cents and the I-90 on-ramp was as painfully packed as ever. My car probably could have driven itself there. Muscle memory, I suppose?

I got very excited when I crossed the first bridge over New Hampshire seacoast waters. There are two bridges crossed on the way into Durham after finally exiting the succession of freeways. Theses bridges bring back so many good memories. Just like I remembered, there were sail boats passing under and kids and their Dads dangling fishing poles over the edge.

I took the back way into campus so as to pass by our senior year apartment: one of many within a big, historic (maybe a little decrepit) red house. Oh, we loved that place. We even had a little first floor porch to go with our crusty kitchen and shower stall so small you had to stick your rear out the curtain to be able to pick up a dropped bar of soap as there wasn't enough clearance to bend over.

I found a street spot at the center of campus, pulled in and said out loud to the steering wheel: "I made it." Then I just wandered and reminisced amidst the college kids playing ultimate Frisbee or sprawled out studying on the great lawns. There was a warm sun shining and not one cloud in the sky – a day that even made college kids get out of bed before 11 a.m. on a Saturday.

I loved being back as an alum. I checked out the huge hockey rink where I used to play Broomball (hockey with a ball and a "broom" played while wearing sneakers and skidding across the ice). I walked all the way to the UNH Dairy Bar on the far end of campus for a milkshake. It was completely different and they don't even make their own ice cream anymore – instead, it comes from a local creamery. That doesn't mean I passed it up, however.

Sipping chocolate cookie monster through my wide straw, I meandered back through the heart of campus walking old trails and cut-throughs that I used to take. I spent some time on the couch in my favorite room at the Dimond Library with its floor to ceiling windows. Then, it was to visit Hamilton Smith, the building where most all of my English and Journalism classes were taken. I was pleased to see that literally nothing had changed but the bulletin boards with photos of new faculty members and highlighted student work. The Journalism lab was still in the same place and the other classrooms still had the very small, old wooden desks with attached seats and blackboards on the walls. I was jealous reading about upcoming programs, new majors, and internship opportunities.

I checked out the student union, the college newspaper and yearbook offices and then wandered into downtown Durham – the quaintest little place you'll ever see. Our favorite bars were still there, though some had changed names. Same went for the sub and pizza shops. The amazing falafel place was still there and so was Breaking New Grounds coffee shop–a great reading spot, and The Bagelry, a proven cure for the Sunday morning hangover. I couldn't resist popping into Hayden Sports for a UNH hoodie upgrade seeing as mine from 10 years ago is worn to shreds ... and maybe some super cozy sweat pants.

Impressed and proud that I walked the campus length I was exhausted heading back to the car and drove through frat row and out toward Portsmouth. I checked in at the Inn at Strawberry Bank and fell hard into the queen sized canopied bed that I had all to myself waking up two hours later after a glorious nap. I've never stayed overnight by myself somewhere and it felt very chic to say to the inn keeper that "No, it's just me, just wanted to get away," keeping my story very exotic and mysterious. I had made a vow not to mention the "c" word once.

Hungry, I walked through the historic district and ducked into a restaurant called The Common Man. I took a high top table in the bar. The walls were exposed brick and the lighting was very dim. I had a great view of the street. Perfect Saturday night people watching. Meal choice was a quick decision when I saw "crock of lobster mac and cheese". And, Smuttynose IPA bottles (brewed just blocks away) were only $2. It's a very rare occasion that I have a drink nowadays, but I figured this was cause for one, okay, two. The resulting flushed cheeks felt good.

Very full and quite buzzed I wandered through the chilly air, pulling my trench coat belt tight. I walked past the packed Irish pub, the bustling restaurants filled with intimate conversations, lots of groups laughing and stumbling through the lamp lit brick and cobblestone streets. It was both odd and refreshing to be by myself where no one knew who I was. Not ready to curl up back at the inn just yet, I stopped in for an old favorite: a coconut mocha coffee and took in the crowds of teenagers and the whir of conversations among scholars and lovers in the various sunken cushioned couch arrangements.

When I got back to the inn I smiled at a car parked in the driveway adorned with "Just Married" paraphernalia, including the shaving cream message: "Now make more babies!" I didn't see anyone that looked like newlyweds the next morning at breakfast ... I guess they never made it downstairs. With my coffee and a page turner I read for hours listening from my bed to an acoustic singer performing with his guitar on a roof bar blocks away. I slept lightly and discontented but slept nonetheless.

After a hearty breakfast with the New Hampshire Sunday papers and some window shopping through the quaint stores and galleries of downtown Portsmouth it was back on the road. First I took a quick detour 10 minutes north to the Kittery, Maine outlets but after stopping in one store and enduring all of the tourist traffic it took to accomplish that, I was done. Way too overwhelming. The drive home was much less exciting than the drive up. It was very cold and I was very tired and feeling progressively worse. Bad choice on the two beers. Plus, the warm pancakes and fresh fruit-filled hot oatmeal of the morning had forced me into a food coma and I was groggy and grumpy to have to hand in my room key.

With the help of some NPR talk shows and the highway-side foliage I made it back home. The closer I got, the progressively angrier I got as the realities of everything began tumbling back into focus. When I pulled in I immediately crawled into my own bed where I had a real sleep and came to the conclusion that this is the best place for healing to be done. As rough as the difficult parts in my life are, the wonderful parts are that much more pronounced. As proud as I was of myself and as much as I enjoyed my little independent escape, it felt so good when Craig walked in the door and we cuddled in with Sam to watch Sunday night football. Maybe it took getting away to appreciate that I have nothing to hide from.

Cumulative Effects

It seems that the GND chemo has decided to wait until my last dose to show its stuff. It's a sneaky little bastard. Or, maybe it's the shot of Neulasta, something my post-transplant marrow has never endured. Or, it's tremendous anxiety. Oh, or maybe it's the five chemo regimens I have been on, the two autologous transplants I've undergone, and the infestation of an aggressive cancer. Most likely, it's a combination of all of this.

I've never experienced bone pain to speak of from either the Neupogen or Neulasta marrow stimulating drugs, but this time around I see what all the doctors and nurses have been talking about. The past two days have been full of horrendous pain in my back - lower and mid, in my face (primarily my cheekbones), my chest/sternum and my pelvic bones.

I remember my nurse practitioner at Yale saying that I may feel like I'm having a heart attack because of the chest pain. Though, I don't know what the onset of a heart attack feels like, I have seen people in the movies clutching their chests and I've found myself rubbing mine constantly.

When I say bone pain, I literally mean pain IN my bones. Last night while laying in bed it felt like my pelvic bones were under attack by tiny pricking needles jabbing at them from the inside. It's a dull constant pain with an occasional "spasm" of sorts when the little men with the needles come out. I won't take pain meds because they make me feel worse in the head than they help me in the body. I have however conceded to taking sleeping pills, which have helped me to sleep through the night for the first time in weeks. Relaxation methods just weren't doing it and despite all my resistance to them, the fact that my body desperately needs good sleep was more convincing then my fear of drug dependency. Now? No nightmares. No waking up from the pain. And I'm still sober enough to be able to make it to my minimum of two nighttime bathroom trips without falling on my face ... or wetting the bed.

I initially thought I escaped it, but I guess the hand and foot skin issue that can occur from the Doxil waited until now to creep in. It's by no means as severe as it could potentially be, but it still hurts. The skin on my hands and feet feels burnt and raw, and if I don't constantly lotion with the "Udderly Smooth" lotion they gave me (formulated for cow's utters), my skin actually starts to peel off. It feels like when you fall off a bike and scrape your elbow, but only the top layer of skin is left on the pavement, leaving all the little nerve endings exposed to the air. Prime set up for pain when the wind blows past it.

The fatigue is also tremendous. It comes close to how I felt after the DI-CEP. The chemo working against the cancer cells and the Neupogen working my marrow take up a lot of (wo)man power. It's my brain and my body that are so, so tired. There's no pushing through it. I've just been working on balancing and making sure that I accomplish at least one set of physical activity and one productive thing on my list each day so I don't feel like I'm wallowing through the chemo sea like a limbless anemone.

I think that the emo teenager behind the Starbucks counter yesterday thought I was a recent nut house release. I first stared at him for what felt like eternity. Then I stared at the menu behind him for another awkward eternity but I couldn't digest what it was. I literally just saw white words on a black board and held up the whole line until I could put a few of those words together to make a coffee order. As much as it irritated the barista for me to throw him off his fast track, the venti, foamy lattee of choice did help make things a little better.

The weather has been gloomy and rainy which has complemented my physical state - for better or worse. I like the onset of crisp, fall breezes, but the sun could come out any time now. I'm sure that the dreary skies are a contributing factor to my gloomy whining. Also contributing is the weight of the unknown. I still don't have a final treatment plan/timeline ... rough estimate as to when we'll be starting all the allo transplant jazz is mid-September. I have major problems when I don't have answers and next steps and I am working very hard on changing that about myself because it doesn't do me any good to freak out about what I can't control. I need to focus that energy on things that I do have influence over.

Everything depends on my Sloan doctor's review of my PET Scan, which is coming up next Thursday, Sept. 2. Everything else will fall into place after that. I have to trust the process and let go. The only problem is that it's the only thing I can think about. And if I'm not thinking about the transplant, I'm thinking about how to not think about the transplant.

Setting Intention

In one of those cosmos aligning, kismet life occurrences, I've found a place that was seemingly built just for me in this time in my life. Just a few weeks ago Enlightened Way Wellness Center opened in the Tariffville Mill, a 3-minute walk from my house. They offer yoga, free meditation classes, massage and body treatments, an herbal tea bar, lifestyle programs and more. But most importantly the couple that runs it are two of the most kind, generous and inspiring people I've ever met. I've had the pleasure of spending time learning from them and plan to do more.

It's been especially great as the center is so new that morning classes are sparsely attended ... I've had a one-on-one yoga class and a private meditation session with both owners. They've offered me suggestions, tactics, visualizations, breathing techniques and a calming focus to lean on as I prepare for the daunting treatment ahead of me and deal with the physical and mental effects of the treatment I am currently in.

After a strengthening yoga class the owner, Mark, pulled me aside and said he had been thinking about me and had some thoughts that he wanted to share if I was open to that. Oh, am I ever. I'm looking for everything I can find to help get my mind, body and spirit in the right place to survive this. We went into the comfy and calming meditation room and discussed:

When we are born we are perfect. We are a perfect manifestation of 100 trillion cells each working in synchronized harmony like a choreographed dance. It's when we hit the world and outside influences come into play that the cells lose their place and get out of step. Enter cancer. Thinking of it this way helps me to realize that it's an organic process. It is nothing of my fault or anyone else's fault that this happened to me. Something just set these certain cells off course and into mutation and now it's just a matter of them finding their way back to that pure and perfect state where everything is once again in harmony.

Rather than visualizing chemo eating away at the cancer cells like a game of Pac Man, I'm working on visualizing my treatment as creating a healing light inside of me that fills me with the power to repair those broken cells. I'm visualizing the cancer cells inside me not as an enemy trying to kill me, but instead as my children that have lost their way. They just need some help in getting back to their pure state. If you have a kid that's seemingly out of control, you still love that child unconditionally, right? By listening to what they're asking for (rest, the right nourishment, peace), with intention, I have the power to get things back in order. By setting the right intentions, I can help those cells rejuvinate and remorph into healthy cells, just like they morphed into unhealthy ones. That may require some tough love, but love nonetheless.

I believe strongly that those who survive and can stay sane during something like this are those that can embrace the negative things that happen to them and learn to work with them, not against them. This fits my personality much better than the idea of killing and anger.

What we give attention to grows. If I focus my attention on being angry or being as "pissed off" as the cancer is, then that anger is only going to grow to other parts of my life. From the beginning I've never been angry or resentful for more than fleeting moments as I know it's energy wasted – and most days I don't exactly have energy to spare. Rather than hating and cursing them, if I look at those cancer cells as part of me and love them then that love will grow. Attention is what I am focused on right now. Intention is what I am setting for my future. A future of health and harmony.

By no means does this mean I'm giving up the battle. I talk often about the Rocky mentality and having that story as my inspiration. What strikes me so much about it is it's about going the distance; getting back up when you don't think you can. It's not necessarily about being stronger or more blood thirsty than the enemy, but instead about knowing how to fight smarter. In fact, Rocky doesn't even win the fight in the original movie, but he does go all 15 rounds with Apollo Creed – a big deal. That does not happen by accident ... it all goes back to his training, to harnessing fear, to digging deep and finding that place, to rolling with the punches.

Mark pointed out that in ancient martial arts when one opponent is being attacked by another, instead of tightening up and puffing out his chest like burly guys in bars after a few beers, he leans back to absorb the hit and lets that force ricochet off him and into space. It's a similar concept to Parkour or Freerunning, the physical discipline of training to overcome any obstacle within one's path by adapting one's movements to the environment. This allows those that practice Parkour to be able to land seemingly inhumane leaps and bounds without shattering every bone in their bodies. In short, I can't control what's happened to me and the physical challenges that it brings, but I can control my attitude toward it and how I absorb it into my life.

For me it's vitally important to be an active participant in my care, complementing the powerful medicines and scienctific advances that I'm subject to. It's easy to sit back and say "everyone is going to get cancer anyway so why should I care how I treat my body?" This is a detrimental way of thinking. Life is about building a foundation so that if and when we do face deep stress, loss, or illness, we've built the foundation we need to be able to handle it, that we've learned not to puff our chests and attack it but to absorb it, listen to what it's trying to tell us and use those answers to carry us forward. If our bodies and minds are not strong during "regular life," what is going to happen when that life is turned upside down? I am forever grateful that I was in the mental and physical place that I was when I was first whopped with this diagnosis and that I've been able to maintain that with each diagnosis since.

Sure there are days when I turn into a crazy person for a little while. No matter how much yoga and visualizations I do there are days when I cry and scream and become resentful and frustrated. But that's an important part of the process too. Without going off balance I wouldn't appreciate the stability. There's no better feeling than getting to that low point, reeling myself out of it, then being able to look back, take a deep breath and learn from it.

GND Chemo: Infusion One

And so it began again. The start of yet another chemo regimen. Another cocktail off the extensive chemo drink menu. Like the soda drink options at Sonic, the combinations are endless. We're hoping that it's this one that does the trick.

Last Thursday I was escorted to chemo by my childhood best friend, Kristen. My parents were on a much needed vacation and Craig was teaching at his summer job. I didn't want to go the first round alone not knowing how I would react to the drugs, nor trusting myself to be the only one to hear the ins and outs from the doctor of what the regimen will bring. Kristen and I have been close since I threw up all over her Cabbage Patch notebook in Miss Arel's first grade class. She's the kind of friend that'll be there for you in a heartbeat. So when I called and told her I needed a designated notetaker and chemo companion she took the day off and was on board.

She got to witness my chemo morning procrastination routine although I saved her the hissy fit my mom usually receives. I was still in the shower when she showed up and prolonged packing my snack bag until the last possible moment. It takes a lot of motivation to psych myself up to get to chemo after already going through so much. It is certainly no longer a novelty and I always go back to the metaphor of knowingly flattening your palm onto a hot burner ... but it's something that has to be done. At least I am able to receive this chemo locally in Hartford so as to not add the long travel time into the scenario. And even more placating, it does not require hospitalization.

To bring more anxiety to the scenario, Dr. Dailey was on vacation. I suppose this is allowed, but I don't like it. But being the caring oncologist that he is, he spent the morning on the phone with the doctor that I saw in his stead and filled him in on my biopsy results and the regimen that he wanted to begin.

We learned that the biopsy revealed – as expected – classic Hodgkin's disease, nodular sclerosis subtype. I was relieved that the cancer had not morphed into some incurable or unknown type. I'm familiar with this invader. With that said, we are going with a regimen called GND, which features the drugs Gemzar, Navelbine, and Doxil. Used in combination, these drugs have been proven in recent studies to be very effective salvage therapy for patients with Hodgkin Lymphoma who have failed chemotherapy or an autologous stem cell transplant. This is referred to as my "salvage" chemotherapy meaning that it is what we hope will immediately eradicate the disease and put me into a good enough remission to be able to head into the allogeneic transplant. They're standard line chemo drugs so not nearly as intensive as what I've been used to receiving. Always in the back of everyone's mind is to be delicate with me as my body is still reeling and recovering from the very recent bone marrow bashing that was my transplant.

We were told that my hair might not fall out from this regimen, which is fantastic as it's been growing at an amazing clip. I once again have a full set of eyebrows and my eyelashes are longer every day. My hair now looks like a very, very short buzz cut. One of the drugs, Doxil, can cause Hand-Foot Syndrome which results in redness, blisters, burning and flaking on the skin of the hands and feet. Other than that, the possible side effects of each of the drugs are pretty standard – they'll lower my white blood cell and platelet counts, fatigue, achyness, malaise, nausea, yada, yada, yada.

The regimen works in a 21 day cycle with chemo once a week for two weeks then two weeks off to complete one cycle. I will complete two cycles then we will check a PET Scan to see what the progress is and determine if another cycle is needed. This will happen in about five weeks or so.

In total, the whole process took about five hours, similar to the timeframe I used to spend at the cancer center during ABVD. The anti-nausea pre-meds take some time then two of the drugs drip over a half-hour while the third drips over an hour, then there is the fluid I need to flush through and the waiting between drug changeovers.

To prevent the possibility of contracting Hand-Foot Syndrome, the nurse had me rest my feet on ice packs and hold an ice pack between my hands during the hour that Doxil was flowing into my port. Quite contrary to the toxic substance that it is, hanging in the bag it looks like a refreshing bladder of pink lemonade Crystal Light. It's the most prettiest looking of drugs I've received to date.

Kristen and I were given a private room in Hartford with its walls covered with UConn and Yankees memorabilia and knick knacks galore – teddy bears, bird houses, plastic figurines, angels. There were pictures everywhere of someone's children and lots of motivational placards and posters. It felt a bit like getting chemo in a flea market. A handwritten note above the clock read in Sharpie: "The last time the Red Sox won the World Series" with an arrow pointing down. I didn't get it, but it was obvious that whomever decorated the space was on the pinstripes side of the rivalry. This is a stark contrast to the cool colors and meditative photographs that decorate the rooms in both the Avon Cancer Center and Smilow down at Yale. However, the double wide recliner was comfortable and my nurse was efficient, friendly and informative. A great combo.

We chatted the whole time catching up on funny middle and high school memories, bringing up random people that we haven't thought about in forever. We snacked on treats and rehashed the chemo plan until we both decided we had a fair understanding of it all. The time went by very quickly and though it's of course not the ideal situation, chemo is a fantastic way to catch up with old friends.

Fast forward to today and I have managed to avoid the rashy skin symptoms and really any other symptoms at all. Sure I get tired and have had some of the familiar feels like a flogging back pains reminiscent of ABVD treatment, but nothing has been even close to debilitating. The fact that the regimen orders a two-week rest period tells me that the drugs are pretty powerful, but I suppose it's all relative now. Having undergone chemotherapy that left me incapable of standing up or mustering the energy to eat at times leaves me with a pretty high tolerance. Even so, I'm impressed with how my body has handled this round after being so compromised just weeks ago. There was a high probability that this could have just flattened me right out.

But in fact, this week has been filled with lots of get togethers with friends who have stopped by, cookouts and fire pits, hikes and exploring. No matter how I feel, I've been walking every single day and am getting back into a yoga class routine. I drown myself in water to flush out the cancer cells that I visualize breaking apart within me as the chemo does its job. The healthy eating continues, our crop share at a local farm helping tremendously with that as we have access to so many fresh-from-the-ground veggies. I may even venture to say that I'm getting to be a decent cook ... and enjoying the cooking process.

Tomorrow I am back for more chemo already and can only hope that it goes as smoothly as it did the first time around.

Just Another Surgery

It's crazy to think how commonplace anesthesia, breathing tubes, cold, cold, cold operating tables, steri strips and hospital provided no-skid socks can become. This was my third biopsy in just a little over a year, not to mention the two bone marrow biopsies and egg retrieval surgery.

However, this time I got a blue-and-white seer sucker robe to tie over my johnny. I kind of wanted to take it home. Other than that, it was same old. Just another slice-me-open-and-take-out-a-chunk-of-lymph-nodes kind of day.

I was the surgeon's first case of the day so my mom and I arrived at 6:15 a.m. after a 4:30 a.m. wake-up. We were bright and cheery to say the least. I'm glad she was the one driving on the highway.

I was brought to the pre-op room where an IV was placed in my forearm and I had a visit from the anesthesia team where they explained the usual process of sending me to Tahiti, that I would be breathing on my own but would have a tube in my throat to breathe in the gas that would transport me.

Before long I was rolled into the cold OR where the operating team all introduced themselves and we made small talk about the construction at the hospital. My funny little surgeon was cracking jokes and full of smiles. He indicated that he would reopen the "wound" he left there in May, 2009 as my new cancerous lymph node was right underneath it. They were all so nice and we repeated together several times what procedure I was having done before the surgeon wrote it in marker on my left shoulder ensuring he was going into my left underarm.

The last thing I remember is breathing gas out of a big tube covering my entire mouth ... the anesthesiologist telling me to mouth breathe.

"Have a nice, deep sleep. We'll see you soon," said the nurse.

I thought of snorkeling less than 10 days before when I was also breathing in and out through my mouth and pictured myself surrounded by cobalt blue and neon yellow fish rather than wrinkled blue scrubs and blindingly bright round surgical spotlights.

With just a few breaths I was out and remember nothing until waking up in the same room that I had started pre-op in, which was now converted to the recovery area for all of us morning surgical cases. Soon my mom was brought in and I felt totally at ease. My underarm was in some pain so they gave me some IV pain meds and after cranberry juice and graham crackers, a Percocet.

After maybe an hour I felt fine and was released. A pimply faced, teenaged, super shy volunteer

wheeled me out to the car via the fastest wheel chair ride I have ever gotten. I swear we were squealing around the corners. He took his patient transport assignment seriously. It was rather exciting.

Other than being loopy from the Percocet and orange from the sterilizing iodine, I really felt fine. My mom cooked me up some eggs and cheese when we got home and I cuddled into the couch where I camped out for most of the rest of the afternoon. Craig came home from work and joined me in napdom. He then cooked me a delicious burrito and we ran out to rent a movie. After an inspiring viewing of Invictus it was more sleep.

I didn't take any pain meds after getting home and have been able to squelch the ache with Extra Strength Tylenol alone, which makes me very happy. Today I was just sore in the armpit and my throat but had a lot of energy ... enough for a 40-minute walk which felt fantastic. I had good music pumping and a lot of aggression so the adrenalin just kept pushing me. I also finished a book and baked kale chips and zucchini bread. This was quite satisfying. Luckily, I was able to remove the surgical dressing and shower this afternoon as sweating in these 90 degree temps revealed smells I didn't know I could produce.

Dr. Dailey started me on Prednisone steroids which has helped to calm the Hodgkin symptoms and I'll stay on these until I start chemo on Thursday. It's eliminated my fevers and has much reduced the aches from my swollen lymph nodes and the swelling in my chest.

I have not yet heard the biopsy results and have no idea what we'll be getting into on Thursday, but I know that I'm going in to start chemo of some sort as they want to get me going on something as soon as possible to zap this cancer.

Tomorrow entails an echocardiogram to ensure that my heart is strong enough for more chemo. But more importantly, I'll be meeting Craig for a picnic of our favorite Chipotle burritos and a walk around our old West Hartford stomping grounds. Hoping for another one of these beautiful summer days we've been spoiled with.

What Do You Want From Me?

I had nothing but a big bowl of anxiety the morning I was to go in for all the tests. I wasn't allowed any food because of the scan, but I don't think I would have been able to eat anyway. The drill was routine enough: injected with the dye and left to drink the milky, chalky barium sulfate in a dark room for an hour with no stimulation allowed. Once in the PET Scan machine I fell asleep to its whir under the color changing lights installed in the ceiling that remind me of the back of a limo. Blood work followed then it was upstairs for a breathing treatment and to see my oncologist.

He and his nurse spotted Craig and me in the waiting area and called us right back to the exam room. He joked about how we blew him off for a vacation (I was supposed to have my scan July 1, five days earlier) and then said he had heard from Dr. Dailey that I hadn't been feeling well.

I told him that no, I hadn't been, and the conversation continued into the exam room. As we spoke, his nurse Erin pulled my PET Scan pictures up. We were all seeing it for the first time.

"Well, it looks like it's back," said Dr. Cooper. Craig witnessed Erin do a double take and a little jump, so taken aback by what she was seeing.

Dr. Cooper palpated the lymph nodes I had been concerned about and they were in fact the exact places lighting up on the scan. The four of us then huddled around the flat computer screen marveling at my 3-D body head to toe marred by these black globules filling my chest, my left underarm, my neck and collarbone area. Some starting in my abdomen and pelvic bone.

"How is that possible?" I asked, deadpan. At this point we were looking at the PET Scan I had after ICE which was completely clear save for one questionable area in my chest lined up next to this one with so much activity.

Noticing that I was a little woozy, Dr. Cooper invited me to sit down as we talked further.

"I'm positive it's malignant," he said. He explained that it's most likely the Hodgkins back again, but that there is a chance it morphed into Non-Hodgkins or another type of lymphoma. He explained that it's "highly unusual" to see a relapse this fast especially after the highly aggressive treatment that I just came out of. "Whatever this is, it's pissed off," said Cooper.

From this point on I only heard words. No coherent sentences, just words. All I could think about was how small his pupils were as I stared at them through his rimless glasses. He went on about treatment options, why I may have relapsed, allogeneic stem cell transplants, stem cell donors, DNA testing, smart missiles, Ebstein Barr Virus, b-cell lymphoma ... . It was Charlie Brown's parents on the other line of the phone again: "Wah, Wah Waaaaah, Wah, Waaaaaah."

Craig diligently took notes and paid full attention so I was able to let myself go even further. I stared at Dr. Cooper's khaki's and his blue office shirt and wondered why he never wears a white coat. Then I pictured his closet full of boat shoes and khakis and only light blue colored shirts - striped, checked, plain. It's all I've ever seen him in. Kind of like a cartoon character.

I'd float in and out of the conversation. My tears would well in my eyes and then subside. The lump in my throat continually jumped. I was not surprised at the news, though I was deeply, deeply disappointed with it. I know my body very well and I knew that the cancer was back as much as I tried to will it and visualize it otherwise. That is why I pushed to go away on vacation together so last minute. I knew deep down that this scan would reveal a whole new adventure to come, but this knowledge did not make receiving the news one iota easier.

They decided to bring in the pathology team right then and there to try and get some tissue samples from my external lymph nodes through a fine needle biopsy. This would help us to better know what we were working with and be able to better formulate a plan.

A doctor, resident and intern come in and I mustered all my strength to not burst out crying. I had hot tears rolling down my cheeks for the few moments that Craig and I were alone in that dreaded room. He looked ashen and his eyes instantly grew dark bags below them.

With no numbing medication whatsoever, the doctor came at me with a "fine needle" which he jabbed into the lymph node on my collar bone and then moved up-and-down, up-and-down, sucking up tissue into a syringe gun. It felt like it sounds. I just stared at the wall and gripped the soggy tissue in my hand.

They'd leave the room to go look at the sample under a microscope then come back and say: "no diagnostic material to work with." This happened twice in my neck. Then they went for the node in my underarm – again, twice to no avail and they decided to stop and instead schedule a surgical biopsy. More slicing and dicing.

After my breathing treatment and more blood work which kept us there until nearly 5:30pm, we were finally released. As soon as I got to the parking garage I lost it and cried and cried as we sped along the highway. I felt so angry and so sad all at once. I kept kicking and smashing an empty Poland Spring bottle at my feet and choking and yelling.

I felt so awful and so faint that all I wanted was McDonald's ... something I haven't eaten since I felt so awful after my bone marrow biopsy last year. Craig pulled off the highway and I indulged in French fries, two "cheeseburgers," and a mocha Frappe. The grease and immediacy of it made me feel better. Though my stomach didn't feel so hot that night.

I called my parents who came to our house and the four of us sat in the sweltering heat of our living room under the ceiling fan as we recounted what happened. We were all crying on and off and all glowed from sweat and anger. We asked a lot of unanswerable questions and tried to wrap our brains about what was coming next.

Here is what I currently understand:

The very likely path we are embarking on is toward an allogeneic stem cell transplant. This means that I will this time get the stem cells of a donor to create an entirely new immune system since my own stem cells still couldn't combat this disease. The ideal donor will be my brother or sister. Both are being tested to see if their DNA is a close enough match. If not, then the national bone marrow/stem cell donor registry will be searched, which contains over 7 million people. The hope is that one can give me the stem cells that will save me. The allogeneic transplant is much more risky than the autologous transplants I have already gone through because there is the life threatening risk of graft vs. host disease and that this new immune system could recognize my own body as foreign and eat me alive. I'll be in the hospital for at least a month with major precautions and will be watched very closely during the most crucial first 100 days.

Prior to that whole process, I need to get into remission and we need to stop the spread of the cancer now inside me. To get there, I will have the lymph node in my left underarm biopsied tomorrow by the same surgeon who biopsied that same area in May 2009.

We'll get results on Wednesday, and I am on the schedule to start chemo on Thursday. I don't know what kind of chemo or what the regimen schedule will be yet ... that will depend on the biopsy results but a couple different cocktails have been tossed around, each which include drugs that I, and more importantly, this Hodgkins has not seen before.

We're consulting with oncologists at Sloan Kettering in NYC and Dana Farber in Boston, in addition to the expertise and collaboration of Hartford and Yale with the hope of getting a good, solid consensus and making sure that I'm on the absolute best track to get rid of this thing forever. I am no longer an easy Hodgkin's case. I am now an anomaly defying all the odds–something I did not and do not want to be. I have had Adam Lambert's "What Do You Want From Me?" stuck in my head for days just not understanding why this is happening to me.

However, there are still options and my doctors and I are hopeful that there is still a good chance for long-term remission. I am scared as hell, but equally as determined to ensure that that happens. I will endure whatever I have to to keep on living. There's no way that this aggressive cancer can be any more pissed off and determined than I am.

ICE Round 2: Aftermath

In the past I've thought I felt like shit, but that was nothing. I liken these past couple of days since chemo to feelings of oozy, raunchy, steaming dog shit.

I am completely zapped of energy. It takes a tremendous amount of effort to get myself out of bed and onto another horizontal surface and that's pretty much all I've been doing. When I do get the strength to shuffle around in the kitchen or to walk to the mailbox I return with a pounding heart and have to immediately sit to calm my body back done again after its excursion. What I have to continually tell myself is that this is because my body and the chemo is working so hard against the cancer cells and that my body is trying to bounce back from being ravaged with three days worth of high-dose chemotherapy. But it's hard to keep that perspective when any sudden movements cause a wave of nausea and when my brain just literally can't focus on even the most mundane of tasks.

As Craig said last night, "If you didn't feel this bad, then we should be worried." This makes sense, I suppose. I feel bad because the chemo is working. It is tearing out my insides - literally. The whole first six inches of my throat feel like an auger went through it hacking away at the soft tissue so that it's hard to speak at a normal volume and uncomfortable to swallow. Despite that, I drink and drink and drink - water, Gatorade, Crystal Light, and more water. It's vitally important for me to force the fluids to flush everything out and keep my kidneys functioning well. I also shove the food down my throat no matter how nauseous I am.

Between the steroids and my body's fatigue, I certainly have a big appetite and eating usually curbs the nausea waves. I consider it fuel for the cancer bonfire that's happening inside of me and I must continue to give it the kindling it needs so that it doesn't go out. This means many frequent meals throughout the day - and it's odd things I crave. Last night I couldn't get my mind off Pad Thai so we ordered in and that did the trick. This morning it was banana and peanut butter sandwich then a healthy portion of bacon and spinach. Right now all I want is fiery chicken sausage so I'm working on Craig to light up the grill.

I am proud to say that I have not vomited and I made it past the vomit point of the first ICE chemo. I also have not had a bowel movement ... sigh. But, you take what you can get. I'm on some different nausea blockers this time around. Zofran in the morning and then I have this cannabis-based drug called Marinol. It's synthetic delta-9- tetrahydrocannabinol, the same chemical found naturally in marijuana. It's often used for cancer patients, AIDS patients, people with anorexia needing an appetite stimulant. Side effects are "elation, easy laughter, relaxed mood." Now this is a much nicer side effect list than what I'm used to reading on the printouts for each of the chemo drugs: nausea, vomiting, diarrhea, heart palpitations, rash, hair loss ... . Truth be told I've only taken the Marinol twice. I'm a big proponent of "the less drugs the better" especially with how many I have in my system without a choice. I like to use mind over matter techniques until I just can't take it anymore, then reach for the drugs. I just never want to be dependant. The Marinol does cut the nausea very well, but I wouldn't say I experienced a "high" - not that I would know what that is like - except for that one time in college ... .

Today is certainly much improved over Thursday and Friday and to make it all better it's been hovering above 70 degrees with bright sun each day. So, even though I'm not able to do much, I'm able to lay in my anti-gravity chair, complete with flip-over shade and full reclining capabilities as I just exist outside in the warmth. There are certainly some healing powers to that. Yesterday I reclined so hard in my chair that I rolled right over myself - head in the arborvitae, ass following immediately afterward. My mom and Gramma were there playing Rummy 500 while I floated in and out of sleep all afternoon. My Gramma, who's weak from getting chemo two days ago herself, is the one who rushes over to help me up while my Mom stands turned away from me, hands between her legs bent over laughing and trying not to wet herself - her usual reaction to these types of occurrences. I also almost pissed myself I was laughing so hard at the hilarity of it all as I picked pine needles out of my mouth and scraped the sap off my elbows.

"Does this count as alternating rest with light exercise periods?" I asked my mom after the summersault stunt.

We laughed more - Marinol induced or not, that was funny stuff. I guess my reflexes are a bit compromised.