Partial Remission

The experimental drugs LBH589 and RAD001 did their jobs. As tough as it was to be on this aggressive clinical trial, it was worth every, every, everything. It was worth every ounce of pain, fatigue, aches, tears, emotional rampages, nausea, weight loss, dry mouth. It was worth every long, cramped plane ride, every shot, every blood draw, every piece of endless paperwork and every sleepless night. Now I can see as clear as day why my body has been so wrecked and tired. Now I know that it wasn't the lymphoma growing, it was the lymphoma retreating and my body working tirelessly to get everything back into harmony.

The drugs have reduced the lymphoma problem areas in my body by more than 50 percent and eliminated some hot spots altogether. The cancer presence is not completely gone, but my PET and CT scans revealed a very, very good response; it's virtually nonexistent. The trial team in Texas was extremely pleased about the affirming science and very happy for me. The response is so good that MD Anderson has taken me off the pills and has signed off to send me onto allogeneic stem cell transplant at Sloan Kettering.

I know I have a huge treatment journey ahead of me still – arguably the biggest leg yet – but for right now I am relieved and thrilled to the core. I am finally ready. I am one huge step closer to the ultimate goal of long-term remission.

Back to Big Texas

I fly back to Houston, Texas, on Sunday to fulfill a whirlwind day of tests required for the MD Anderson clinical trial that I am on. I'll undergo a long series of diagnostics tests on Monday: bloodwork, chest x-ray, CT Scan, PET Scan, EKG, etc. Then I'll meet with my doctor and his trial nurse to go over all the results. She and I have been in touch via e-mail nearly daily since I've been at home with the drugs. This will be the opportunity for them to examine me in person and hash out face to face how my body is handling this

Oh, did I mention I'm getting a PET Scan to reassess the lymphoma presence? Silly, I didn't even realize that, must have slipped my mind. Ha. Far from it. It's at the very forefront of my mind. The scanxiety has again set in. Monday will mark two cycles on the Panobinostat and Everolimus novel drug combo. Per clinical trial protocol it's now time to see if they are working and I should continue, if they are not and I need to seek different drug options, or, if it's all clear and it's time to move – very quickly – to allo transplant. Or, some different development that carries a new adventure altogether.

To avoid redundancy and the toll it can take on my body, my transplant doctor at Sloan has agreed to read the PET Scan from MD Anderson. He'll collaborate with my team there to make the call on my best next steps.

I had planned to go it alone this trip, but last night, after further talks with my husband, we realized that this is not the time for me to be cocky pants. He wants to be there for me and having him there will alleviate a big amount of the stress of travel, paperwork, appointments, airports and taxis.

I need another set of ears and eyes and the strong, comforting arms of my hubby. I hate to admit it, but my capabilities and endurance have taken quite a toll and I need to adjust to those new levels. I will be receiving hugely important information and quite honestly I don't trust myself to be able to take it all in on my own – good or not-so-good news. Craig has a great ability to take care of things when my body or mind or emotions zone out or pour out, whatever the case may be. This CEO needs her EVP for this trip. Notice, I'm not demoting myself, I'm still top dog, obviously. But it's okay for me to accept help. Okay, but not easy. I've always had trouble with delegating.

People ask me if I think the drugs are working. The answer is that I don't know. This time, I truly have no idea. I can no longer tell the lymphoma symptoms from the drug side effects as the drug side effects are so unpredictable and undocumented. I have a great amount of hope that this did the trick, but I'm also realistic. I have been feeling pretty awful, but then again, I've taken potent, powerful drugs just about every day since April 1. These novel drugs are not constructed to make me feel good. They are constructed to block and reprogram the protein cells that are telling this lymphoma to grow. I'm just caught in the middle and absorbing all the reverberations in whatever form they take.

Whatever happens, I cannot ever say that I did not try my absolute hardest. The worrying will get me nowhere, and I'm doing my best to keep it at bay. I couldn't think of a better way to do that than to spend tomorrow traveling to Rhode Island to see my little brother graduate from Roger Williams University. It'll be a beautiful celebration and such a welcome reminder of all the positivity, hope and new beginnings out there to be enjoyed.

Sunday, we jet set. I hope to come back with some answers and direction.

Close Call

We merged into the crowd of thousands like fish catching up with their school. The Kings of Leon concert at Discovery Green had just wrapped up and everyone was flocking to Houston's Light Rail. The rail line is the transport mode that would get everyone from the park to the playoff game at Reliant Stadium during all of the Final Four hoopla.

Craig and I were following our group of friends, everyone walking at a good clip. Out of nowhere and very suddenly I started to get the "s-pains" as my childhood friend Kristen and I always called them. You know what I'm talking about whether you have or have not had chemo. I'm talking about the twisting, wrenching, gurgling feeling in your intestines that can come knocking without warning and demand to be let free.

I ooooohed and breathed and alerted Craig to the early warning signs but the wave passed over and through me and all seemed to be clear again. I had been on the new clinical trial drugs for just two days so was not at all surprised that my body would be making strange sounds and my stomach doing flips as it tried to digest them. I figured it was yet another side effect and that the cheese quesadilla with extra guac I had eaten would find its place among the drug compounds and all would be in harmony.

I had a few more waves along the walk but they were short-lived. We jammed into the rail cars and I was literally body to body with Kentucky and Butler fans: mostly college kids, some boozy breathed older men. It was so, so hot outside so everyone was pumped for the cool air of the climate controlled cars. This, however, meant body against sweaty body after everyone had walked several blocks and stood in the sunny park to watch the band play.

It was several stops to our destination. The confinement and the elimination of personal space really didn't bother me. My friends Brenna, Kevin and I were in the same car while Craig and the others were up ahead. When we stepped on, I saw a pole and latched onto it figuring that that was the best placement for me.

Every time we stopped, the train doors would open and a few more sweaty bodies adorned in NCAA gear would step in. All inside would part ways and squeeze tighter, cheering when we got another person to fit in. Brenna and I kept catching eyes knowing we were both having trouble with the way things were going.

Two seats freed up and Southern chivalry set in when the spots were offered to us – the only females in the vicinity. One would think that taking a seat would be good for me to catch my breath and rest my legs. But no, this is when the doom set in. Apparently my body got the message that it was sitting on a toilet seat, not a train seat surrounded so closely by people that I could count their nose hairs.

The ever-friendly Brenna chatted it up with the guy in front of us about life as a Southerner, where he went to school, who he was rooting for. I just stared with a plastered smile on my face at this fit, white-toothed twentysomething like a doofus as inside the s-pains were becoming more and more frequent and my confidence that they would continue to fade was becoming more and more reduced.

Brenna could tell I was fading when she noticed how expressionless and quiet I was and later told me how all of the color drained from my face like a cartoon character's would. She fanned me with the train schedule brochure as beads of sweat began to creep onto my forehead – not the kind of sweat that shows up when you're hot, but the one that shows up when there is impending physical doom.

We began counting down the stops with some of the guys around us: four more, three more ... . They were far between and with each one, the situation got more dire. With two stops left and the doors about to close and the train chug on, Brenna looked me in the face.

"Do you want to get off?" She said.

"Uh, ooh, eeh, ooh, I don't know ... ," I hesitantly said back.

"Do you want to get off?," she said more forcefully.

After a few seconds of silence and the realization that this intestine explosion was most definitely going to happen before we made it to our destination, I said: "Yes."

With swift stealth and confidence Brenna cleared a path.

"We got to get out. Got to get out," she said, as people pulled back their bellies and inched to the side as well as they could so that we could cross the train car and make it to the open door before it closed.

We saw the faces of Kevin, Craig, Betts and Sam as the two of us stumbled onto the platform. They gawked from the train window in horror and worry not knowing what was going on with me nor what to do as they'd never make it out in time to join us. Their faces disappeared and I was in survival mode.

Luckily, Brenna is one of those women that you can be totally open and candid with and know that she's going to be cool with it, get it done and handle it.

So, I said: "I am going to shit my pants, like for real," as that was literally the case. I had to move faster than this flow.

We darted across the train track, me doing a fast waddle like a mad woman and her fast walking behind me desperately trying to spot a bathroom as much as I was. We were both wearing the least ideal flipping flopping footwear.

Though the entire nation's herd of collegiate basketball fans were in the city, nothing was open. It was a Saturday and the stop I had bailed at was a corporate office stop. It may as well have been a deserted island.

As I fast walked and huffed I saw a female security guard up ahead going into one of the buildings. We picked up the pace and caught the door just as it was about to close behind her.

I looked at her with utter desperation and said: "I need to find a bathroom. It's an emergency." I may have even thrown the cancer card in there; I'm not really sure. All I remember is that I spoke loudly, clearly and firmly.

The woman looked back at me with a "been there" look and pointed to the back of the lobby. Brenna took over explaining things for me as I tore across that marble floor like it was my job, because it was.

That zipper on my jeans fly could not come down fast enough. I literally just made it into the stall when all hell broke lose. The doctors had told me that my body would probably reject the drugs a bit at first but I quickly learned that that was an understatement. Wow.

After being in there for what seemed like hours I texted Brenna directly from the thrown to inform here that I was alive, though unstable. She told me to take my time and that she was yucking it up with the security guards.

Craig also got some texts from the throne to assure him that I was okay, that I had my game ticket and to go on ahead without me ... like I was a fallen campadre on a hike through the desert.

I finally emerged when I felt that the Dumb and Dumber-esque event was over. My face was pale as a sheet and mouth dry as a bone. Brenna knew it was bad and that I needed to find some Immodium stat. We had a Final Four Butler vs. UConn basketball game to get to and I felt awful for keeping her from it and was determined not to miss it myself.

It would have been too easy if the CVS right at the train stop was actually open. A tug on the handles and a peek into the darkened aisles of the store revealed that we were not in luck. Brenna's polling of everyone around us and iPhone map consultations revealed that there were no possible public bathrooms around us.

Did I mention it was so, so hot out? A thick cloud of humid air holding tightly to 90-some degree heat. The round one relief did not last long and soon the waves were back. We decided to hop back on the light rail in hopes that the next stop would reveal more options.

To my utter disappointment this was not the case. We jumped off the rail on the outskirts of Texas Medical Center – on a Saturday, a day when orthopaedic centers, radiology satellites, and the like are of course, not open. At this point things were very unsettled again and I did many determined fast walks down side streets and into industrial medical parks welcomed by nothing but glass doors locked solid.

Then we saw it like a mirage across the eight lane highway. Luckily Brenna was game and didn't even question how ridiculous an option it might be. She's pretty bad ass. Far ahead – much farther than originally perceived – was a Holiday Inn high rise beckoning us. Only a highway on and off ramp were separating us from it. Like digital renderings in a game of Frogger we ran across at the first break in highway traffic.

I spotted a Burger King a block or so down from the hotel in this gritty city area so we made the plan to split up. Brenna would continue on to the Holiday Inn in search of Immodium. I would break at the BK in search of the most guaranteed public bathroom option.

I saw nothing else but the sign for "restrooms" when I entered into the wafting scent of greasy fries that was BK. I grabbed for the bathroom door handle and realized to my horror that the thing wanted a quarter from me. I couldn't open it unless I dropped a quarter in the slot. I thought it was some kind of joke. Fishing through my purse I somehow hooked a shiny quarter from the depths of junk that is in there. I dropped that sucker in and flew to the toilet.

There were no stalls, just a huge, very disgustingly dirty room and one toilet. I had not choice but to put my purse on the ground surrounded by discarded toilet paper and puddles of unknown fluids. It was super hot and smelly and by far surpassed even the nastiest gas station bathrooms I'd been in. This made me gag but I was so grateful to have found that toilet.

Partially through my "session" there was knocking and rustling outside the bathroom door. Despite the quarter barrier I had dropped in the slot, the door opened on me.

"Someone's in here. Someone's in here. Someone's IN HERE!" I yelled out while reaching my arm into the vast abyss that separated compromised me from the door.

But there was no stopping it. There I was, white ass totally exposed, pants around the ankles as a big black woman and her toddlers stared at me wide-eyed. Behind them I could see several full tables with more people gawking at me over oversized soda straws.

I stared back at her in quiet desperation with urgency in my eyes until she finally realized to close the door and muffle the voices of the curious kids. This was not the place of solace I needed and I knew I had to move. I pulled it together and walked out averting the eyes of everyone there until I spotted Brenna. The poor thing had to backtrack from the Holiday Inn because she got there and found medicine, but realized she had no cash on her.

She told me how she was banging on the women's room door to try to get me and grab some money from me, but didn't think to try the men's room.

"Did you know you were in the men's room? That is amazing," she said.

Nope. I did not know. Gender was the last thing on my mind. We laughed at the hilarity of that realization as we walked back to Holiday Inn.

I've never loved a hotel so much as this one, which was beautifully cool and clean. Most importantly, it housed a teeny tiny "essentials" shop with snacks and drinks and travel accessories and a little medicine shop. I could hear the "Alleluia" chorus in my head.

The teeny woman who worked in this teeny shop already knew my story from Brenna and was highly concerned about me.

"Are you sure you're okay? Are you still going to the game?"

I assured her that hell yes, I was going and I'd be fine. That this was a once-in-a-lifetime opportunity that I was not going to miss over loose stools. I was here all the way from Connecticut damn it and so were our UConn Huskies.

"Do you want to know the price?" She asked before she geared up the cash register.

"Lady, I'd pay a million dollars for that box of pills you have behind you," I said. She took my credit card and wished us well.

The Immodium washed down with a few sips of Dr. Pepper to quench my incredibly dry mouth, the bubbles calming my tummy some. The kind concierge in the lobby ordered us a taxi to the stadium and after all of that we got into the game at the same time as the boys. Apparently we took the express route. Who knew?

It wasn't until I plopped myself in a handicapped seat to catch my breath and reunite with the boys at the top of our section level that I could almost, almost start to laugh about it. Once I sat for a minute and realized what had just happened I gave Brenna a huge hug then never stopped laughing about the whole ordeal. The rest of our group laughed too and was relieved that it was nothing but the ol' chemo trots.

The crowd, the cheering, the immensity of the stadium and the proximity to the players made it all go away (I suppose that magical Immodium helped, too.) I was so psyched to be there with Craig and even more psyched when UConn took the win from Kentucky. Even with nothing in my system but a few popcorn kernels and an incredibly intense adventure behind me, I got out a lot of screams and UConn cheers.

I don't know who made a better second-half game entrance: me or Kemba?

Blur

I'm not exactly sure what happened, but I think that I lived in Houston, Texas for 30 days, wrecked my body, and am now home on my couch in Tariffville, Connecticut courtesy of a corporate jet and Lincoln Town Car. The month of April has literally been one hazy blur. We arrived home on Wednesday night to our calendar on the fridge that was still turned to March. Craig and I could not for the life of us remember what we did during the days leading up to leaving for Houston, how we got there, nothing. Everything happened so quickly.

I'm disappointed that I did not write more from Houston, but I was so incredibly busy or far too tired to get to it. I know that sounds crazy, but I couldn't get myself to do it. I do have many, many story nuggets that I plan to get to writing now that I can breathe a little bit. But for now I'll do a broad-brush review to get up to speed.

Most importantly, I became an aunt for the second time two days ago. My sister-in-law delivered a beautiful, healthy baby girl: Anna Gisele. She now joins my sweet, sweet nephew, Jake, who somehow is suddenly going to be two years old in August. I am so happy for Eric and Rachel and their newest addition: the news of their good health and sheer happiness eliminates all of the difficult times in my life. I cannot wait to meet her. Before we left for Houston, Craig and I got in some Jake time and his smile and baby language are the best medicine. Together with Anna there are going to be many heart melting moments to come this summer for sure.

After the initial whirlwind of activity in Houston settled, things got pretty tough for me. This was right at the time when my parents arrived. They were with us for the last nine days of the trip. It was really nice to have them there to mix things up and bring a taste of home. I felt badly at first that I was not up to being a gracious hostess and it took me some time to realize that that was not why they were there. Even after nearly two years of being a cancer patient, I still do not do well with accepting help and support. It is a tremendous struggle for me.

Once I accepted that my parents weren't there to sight see in Houston, but rather to just be there for me, I realized that it was okay for me to nap or not want to go out and explore. I am so fortunate to have parents and a husband that care about me so much that they'll sacrifice everything to do what I want to do. Sometimes that made me lash out because I want them to do what they want to do. It's a difficult balance of being extremely grateful and also not wanting to be a burden to anyone. I constantly try to think about what it would be like to be in my caregivers’ shoes and I'd want to be there right with them as well – even if they were just a blob on the couch as I was much of the time.

My mom gave me fantastic back rubs and introduced me to Bananagrams – I don't know what took me so long to discover that amazing game! We played many rounds of that and hung out in my parents' apartment watching silly TV once I finally let my guard down some. My parents rented a car, so my Dad became my chauffeur around Houston, which was helpful to run errands and to get places more easily as my energy had been completely zapped. This allowed us to check out the Houston Museum of Natural Science – including its awe-inspiring butterfly garden, the Houston Museum of Fine Arts' Sculpture Garden, the Japanese Garden in Hermann Park and a scrumptious downtown Farmers' Market. The city really does have so much to offer, much of it right up my alley.

We did get in a trip to Galveston, TX, on the shores of the Gulf of Mexico as well. It is only a short hour-long drive from Houston – Papa behind the wheel. I loved that place. I could have rolled around in the waves like a pig in shit all day long. The ocean water was the perfect temperature and the waves were strong and rolling. The four of us enjoyed some Gulf seafood and took a Duck Boat tour around the island and right into the bayside water as we learned about the history and goings on of this very unique island.

Despite the incredible wind, Craig and I plopped on the flour-fine sand of the beach while my parents did some further exploring. I spent most of the time in the water by myself diving in and out of the crashing waves. The salt water helped to clear my blocked nose and ears and the pressure of the wave undulations felt so good on my back – Mother Nature’s massage therapy.

Easter was spent mostly on the couch or the bed in our apartment. The Easter Bunny did find us there in the form of a bag of candy left outside our door and a beautiful bouquet of flowers that came from my Gramma and uncle back home. Plus, the adorable cards that arrived for the holiday and otherwise. After much internal (and external) debate, we all did make it out for Easter dinner in Rice Village – a Houston neighborhood that I came to love, which is adjacent to Rice University. We ate at a fabulous restaurant called Benjy's. The food was so good that I actually ate half of it and thoroughly enjoyed seconds for lunch the next day.

I love to travel and I love to see new places but there is a difference between being on a chosen vacation and being in a place far from home because you have to be there for treatment. We made the most of every moment that we could, but we missed the comforts of home badly, especially at night when I was remiss of distractions. I missed my Sammy dog tremendously. I did a lot of crying and a lot of yelling. I had many breakdowns and I know that this is because I didn't have my normal coping mechanisms with me at my disposal.

It's at times like this past month that I realize the things that really matter to me in my life. I missed my family and friends. I missed my alone time. It bothered me tremendously to not have nature and woods around me. It bothered me that I couldn't write and that I couldn't go to yoga class. I missed walking and hiking and the Farmington River. I missed having the basic necessities to cook our own healthy meals. I missed recycling. I missed tasty water out of the faucet. I missed quiet. I missed my pillow and bed.

After coming back from San Antonio, exactly as predicted by my doctor and nurse, all of the crappiness set in during week three. I got incredible backaches and tenderness and the fatigue became extreme. I had only a few hours of energy in me each day before I had to take a nap. The record heat and humidity in Houston did not help. Heat in the 90s, humidity 95% some days. I love, love, love the sun and warm weather, but the humidity made my already reduced breathing more labored, and I found myself often in the sanctuary of our air conditioned apartment, which is very unlike me. But the extreme temperature was too much for my body to handle. This worked out okay though because both my parents and Craig run hot and I was actually on the same body thermometer as them for once.

Appetite has continued to be low and I’ve dropped weight. I’m working hard at getting food down, but it’s certainly a chore. I have constant dry mouth. With barely any saliva, it feels like I’m walking around with cotton balls stuffed in my mouth, which takes away the appeal of food. Certain areas of my tongue are also very sensitive to harsh tastes and make it difficult to eat. However, I’ve still avoided any full-blown mouth sores. My lips are another story, though. They are swollen and cracked and in the mornings, especially, I have Herpesesque growths on them that hurt like a mo’ fo’.

On top of the chemo side effects, I caught a cold something nasty, or it's allergies, no one knows. But in any case, it still hasn't quit. It came on with a sore throat in San Antonio, which left but settled into a very rumbly cough, plugged ears and drippy nose. My parents and Craig had to put up with a lot of coughing fits around them. I saw a nurse practitioner in the "fast track" team at MD Anderson, who after ruling out a virus with a sinus wash, kept me on the antibiotic and told me to treat it symptomatically. The symptoms are still persisting, but have gotten better with rest and my home environment.

The good news is that I made it through the entire month down there without ever needing blood products and I required only one shot of Neupogen. I got this really because I asked for it as I did not want to be off of my pills for any more than needed. The schedule has worked that I've had to take a break from the pills for 3-4 days every other week. I've been able to tolerate the other side effects enough to avoid longer breaks. However, the drugs knack for knocking my blood cell count down is really nothing that I have control over, so the Neup shot helped my white blood cells soar back up (in one day) to far surpass the required ANC level of 1.0.

On Tuesday I met with Dr. Younes and Amy again to go over my first month. They were both impressed with how well I did and said that I was able to keep more drugs down than expected. They are still really exploring how much is tolerable and suggested. There are only 23 people that have been on this combo drug study and only eight of them have Hodgkin Lymphoma. I’ve kept diligent track of the symptoms I’ve experienced in hopes that it’ll help them better asses this drug tolerance and efficacy.

The meeting with the doc was very lighthearted. Both my mom and Craig came with me and we had a lot of laughs with the medical team and they gave me the thumbs up to continue treatment back home and get my blood cell levels checked locally with Dr. Dailey at Hartford Hospital. I felt much more at ease meeting with them and hearing that I’m tolerating the drugs well. I tend to be very hard on myself and outside assurance that I’m doing okay is very helpful to me.

To make the travels back home to Connecticut even sweeter, we scored a ride with the nonprofit organization Corporate Angels Network. The charity sets up cancer patients and their caregivers with rides on corporate jets that have open seats on a given trip. We lucked out in that one was going from Houston to Jersey City. They even set us up with a Lincoln Town Car driver from Teteboro Airport right to our door in Tariffville. These were both donated services. The travel effort and financial burden it relieved were instrumental. The experience of traveling in sweet, comfortable rides with incredibly generous corporate execs wasn’t so bad either. They were kind and fun and so, so accommodating. We felt like royalty.

When we arrived home, we were met with balloon clusters and vases of bright flowers in every room of our house. There was a big, adorable “Welcome Home Craig and Karin” banner spread across our dining room table and our refrigerator was filled with all of the essentials. Our neighbors and their kids had been busy. Their incredible thoughtfulness brought huge smiles to our faces. Our smiles continued when our friend Melissa delivered Sammy back to us and we had a good cuddling/petting/tail wagging session. Then all three of us crashed into a sound sleep in our respective couch positions.

I haven’t been doing much besides sleeping since. I slept for 12 hours the night we got back, was up for a few, then back to bed until Craig got home from work. Thursday night was particularly rough. I woke up in the middle of the night with an intense headache. The pain was so bad that I stumbled out of bed and vomited my brains out. I hate, hate vomiting. This is only the third time I’ve thrown up in two years of treatment. I was barely even conscious and can’t believe that I made it to the toilet. Craig woke up to the noise and found me hugging the thing with my face down on the bowl.

I got back into bed with a cold compress on my head just in time for the 4 a.m. live coverage of The Royal Wedding, so at least that was a plus. The nausea and headaches persisted into the next day. As difficult as it was for me to do, I e-mailed my trial nurse to tell her what was happening and ask for a break over the weekend. I can tell without even checking that my counts are low as my energy level is so shot. She wrote back: “Absolutely.”

Basically, the ball is in my camp with this clinical trial and I need to listen to my body and speak up when things get to be too much. I know my body intimately and my medical team wants the best for me. We all want to give the drugs the greatest chance to work, but also don’t want to kill myself in the process. I’m hoping that on Monday I’ll be able to get back on the treatment regimen. Right now though, my body is telling me–in no shy terms–that it needs a break from the toxins and the travel and requires a ton of sleep. I am listening.

Some Houston Pix:

Houston 2

Matters of the Heart

Since I started the SGN-35 in December I’ve been having strange feelings in and around my heart and up and down my arm. I could feel my heart laboring. It did not pound fast like a heart feels after a sprint or a long flight of stairs. It was the distinct feeling that it was working extra hard and it happened only when I was at rest. It was most intense at the end of the day when I’d lay down on the couch to watch the news and unwind. I could feel and almost hear the blood coursing from the upper left side of my heart and down my left arm. At times I thought I was having a heart attack, at other times, a panic attack, but I always made it through it and came to expect it.

After starting these even newer experimental treatments here at MD Anderson, the feeling was happening more often than not. When it came on, it stayed for a much longer period of time, especially in the evening and all the way through the night and into my morning routine. I hated it because it made me so worried that my heart was just going to give out. I had no problem walking for miles, or exerting myself in any other way but when I laid down I’d feel that my heart was so tired and working much harder than it should be.

I’ve been pursuing and persisting on this since its initial December onset. I’ve gotten a lot of “hmphs” and “hmmmms” from oncologists, nurses, and APRNs. I’ve gotten a lot of: “That’s strange,” and with a quick assessment that all of my vitals and functions were fine it was brushed off as maybe anxiety manifesting in strange ways or one of the answers that irks me: “Chemo and cancer can do really weird things.”

The day that I started the LBH589 and RAD001 treatment I told my clinical trial nurse, Amy, about the feelings so she’d have it as a baseline. Again I got the “Huh, that’s strange,” response and she told me to just keep monitoring it. She said that they wanted to pay extra attention to my heart during this anyway.

The side effects of RAD001/Everolimus (the names are used interchangeably) are more well known than the LBH589/Panobinostat as it is FDA approved and has been proven successful in solid tumors, though with not as much data in lymphomas as of yet. The LBH589 is still investigational and not yet FDA approved. Its sister drug, SAHA (Varinostat), which is also an HDAC inhibitor can have negative effects on the heart. Because of this, I have been monitored for the first couple of weeks with frequent EKGs, tests of my heart’s electrical system. This is the very quick test with all of the little sticky disks affixed to points around the chest, heart and abdomen with long electrical leads attached to their conductors to measure the heart’s electricity.

I had gotten an e-mail from Amy one week into my treatment regimen saying that they saw something strange on my EKG reading. She said it was no big deal, nothing to be concerned about, but that Dr. Younes wanted me to see a cardiologist while I was down here. I couldn’t get a straight answer from her on what it was that flagged my test, but only that it wasn’t a big deal and not to worry.

The day of the appointment with the cardiology team, Craig and I sat in the doctor’s exam room after I had had a thorough electrocardiogram, which looks at the heart’s structural health through ultrasound technology, and another EKG. The cardiology resident came in, sat down and with a heavy Ukranianesque accent said: “It looks like the leads were reversed last week. Your EKG and echo are normal.”

I blew out a huge gust of air made up of frustration, annoyance and relief. I had had so much anxiety up to the moment it was incredible. Just an hour before while lying on the echocardiogram exam table tears started rolling down my cheek as I thought about how my body would ever handle a heart replacement or what I would do if the cancer grew and killed me while I was awaiting a valve transplant from a cow. How would I choose to stay on treatment if I knew it was going to cause my heart to fail? When she told me the tech had everything backward I didn’t know if I wanted to wring her neck or kiss her.

But as I’ve always found is that in every bad experience comes a little gift. This time it was in the form of verification and knowledge and eventually, a solution. Even though the lines were crossed on my last test, I still knew that my heart wasn’t right and I wasn’t going to waste this opportunity with a cardiologist who works at the nation’s leading cancer center and sees patients with chemotherapy related heart issues all day every day.

He was like a knight in shining armor – with the demeanor of Al Roker. In fact, he looked exactly, exactly like him. He had the same head shape, the same rimmed glasses, and the same huge smile with shining white teeth against his dark black skin. When we first began talking I had to squelch a big case of the giggles as I couldn’t get over the uncanny resemblance. I love Al Roker and I loved this man: Dr. Jean-Bernard Durand.

I told him about my strange heart feelings and he was the first one who didn’t just shrug me off, tell me to monitor it, and basically look at me like I was crazy. I know that even my family thought I was crazy every time I kept bringing this issue up. Instead, he wanted to look further into it and ordered a 48-hour holter monitor for me to wear. Basically it’s an EKG machine light – a to-go version. I had five monitors stuck to me that connected to a recording device through a series of wires. The recorder clipped onto my pants top like a circa 1980s pager. It also came with a pocket size diary in which I was to record the time of day when I was having an “episode” so that they could look back and check what readings were happening at that time. I did everything as normal – Mexican dinner with my husband, happy hour at the outdoor Icehouse institution with Betts and Brenna. I just did it with a few extra parts attached.

Well, once they saw the results of what my heart does all day it was concluded that I do have some issues. It turns out I have an Atrial Flutter, an abnormal rhythm in my heart. Dr. Durand spent much time explaining what this means and how it is an easily correctible problem that is not at all uncommon. It happens to many healthy, fit women who don’t even have cancer and unfortunately, some chemotherapies have been known to exacerbate it if I did have it underlying before all of this. The Adryomycin of my initial ABVD regimen and this current HDAC inhibitor are known to have heart effects and his thought is that this is likely a result of the experimental drugs and that it may go away when this treatment is over. An Atrial Flutter means that my heart is not beating in balanced beats from one chamber to another in a nice syncopated rhythm. One area is beating two times for every one time the next chamber is.

Dr. Durand said that on a 1-10 scale of heart issue seriousness, this is a 1 and is very common and easily corrected. He explained that the results of the holter monitor revealed that my heart rate was above 100 beats per minute (bpm) for 14% of my day. An average person reaches that heart rate only 8% of the day. There were three episodes where my heart rate was up to 150bpm – herein explains the labored beats I was feeling. Dr. Durand said that my heart was doing the work it would be doing to run a marathon and doing it every day. We need to get all back in sync because though it is not an immediate danger now, it will be in the future when my heart tuckers out. It can’t sustain that pace forever. But right now there are no structural issues with my heart. It is strong like bull.

To correct the Atrial Flutter he started me on a twice-daily teeny dose, 6.25mg of Coreg, a Beta blocker that will lower and stabilize my heart rate. In studies, it has also shown to have a protective effect on the heart during chemotherapy treatment. It sounded a little counter intuitive to me as my blood pressure always runs so low: I average 90/60 and have dipped much lower and always have to beg and plead that it’s normal for me … I have the heart of an endurance athlete so they say. However, when my heart rate, which is normally around 65, spikes to 100-plus then this is a problem. For other people that may be what they shoot for, but for me that’s a huge jump. Every time it’s been checked here, it’s been climbing steadily.

So, add beta blocker to the mix of meds I’m on to keep this body in tip-top shape. I started it this past Tuesday and have had no episodes since. A huge layer of anxiety has lifted with this development as well. There is an incredible calm that comes in knowing what a problem is and an even greater calm when the problem can be easily fixed. I now have documented evidence that I am not crazy and that my heart is safe and whole.

Fiesta Fiesta

I’ve gotten into more of a routine down here in Houston and have begun to understand, appreciate and anticipate my side effects. It does not make the side effects any more tolerable, but there is some comfort in being able to manage them. I now know that at 3:30 pm I will hit a major wall. Now we just factor that into the day. It’s not even that I need to nap. Even though we’re so close to Mexico, I still have not mastered the siesta. It’s just that my body needs to be horizontal for a little while and I’ve learned to oblige. The wall has less give than the one created by any other drugs I have been on. The fatigue is pretty debilitating.

My appetite still isn’t regular if it exists at all. I am continuing the routine of smaller meals and eating when I’m able to. I wish I could enjoy more of the food here, but small samplings are still satisfying. If I put too much food in, or even have too much on the plate in front of me, I’ll get nauseous or if I do get it down, it usually comes right back out after a couple hours of super fun cramping. Healthy snacks and smoothies throughout the day are much easier for me to digest.

I have back and hip aches still, but nothing that has kept me from remaining active and as “normal” as possible. When I can work it out to practice with my yoga DVD it certainly helps. I do greatly miss the walks I am used to taking at home, whether in the woods, at the Tariffville Park, or around the residential cul-de-sacs. But for now I’m making the Long John Silver’s and Five Guys Burger and Fries parking lots work for me.

Despite the warnings that they would come, I’ve had no mouth sores at all, just major dry mouth and thirst. I’ve taken the advice of my nurse of a baking soda and water rinse a few times a day and believe that that’s helped to keep things normalized. I am constantly drinking something and this means I pee about every hour. I’m taking a thorough tour of all the restrooms Houston has to offer.

I’ve managed to escape any crazy, unexpected side effects and somehow my blood counts haven’t plummeted as low as expected either. This has meant no need for any transfusions or Neupogen shots. My nurse was very surprised to read these results and had to ask to be certain that I am taking the full pill dosage. I think I’m skewing their drug research data. This makes me pleased and very proud that my bone marrow is still able to recover on its own after all of the treatments its been subjected to.

That’s not to say I haven’t dipped low, but rather that I have been able to bounce back. My platelets are holding steady around 47 by yesterday’s check. However, like last week, my neutrophils dropped over the weekend to .98. That level is under the required 1.0 and because it is on the decline, it was decided to stop the pills again until at least Thursday to give myself a little time to build back my immunity and strength.

This was welcome news as it makes me woozy for a little while after taking the pills and I have to fast before and after. It’s not super fun, but I’m getting them down without a problem. My body could use a break after taking both the RAD001 and LBH589 at once on both Friday and Sunday per my schedule.

Plus, I have annoying cold/cough/allergy jazz going on so I think that factored into pulling me off treatment for a couple days. It started with a terrible sore throat Thursday then moved to cough and now a lot of nose blowing. A chest x-ray yesterday revealed no pneumonia or anything of concern. They started me on Levaquin antibiotic to kill anything that may be turning into a bacterial infection. Again, it’s no biggie, just annoying more than anything. The cold symptoms add to the fatigue caused by treatment and anemia.

But all of that is depressing. Onto non-medical news: Craig and I were able to take a short getaway to San Antonio this past weekend (a 3-and-a-half-hour drive) and my parents flew into Houston last night. These are both things that made me very happy.

San Antonio was absolutely beautiful. Craig and I wamted to explore some more of the great state that is Texas. We had heard from so many people that the River Walk was a must see and it truly was right up our alley. The downtown is built up all along the river with restaurants, bars, and shops along the stoned sidewalks and theatrical bridges and tumbling waterfalls. It was the perfect pace with lots of places to relax and enjoy a little escape.

Unbeknown to us before we booked the rental car and hotel was that this past weekend was also the culmination of the city’s biggest event of the year: Fiesta 2011. For 10 days the city parties it up with carnivals, parades, outdoor markets, fairs and guacamole galore. Saturday night included the Fiesta Flambeau parade with illuminated and animated floats and vibrant marching bands and dance troupes. The streets were lined with tens of thousands of people. I had to call it a night at 10pm, but even at that time, the parade was still in full swing. We caught a huge, huge outdoor festival with Mexican crafts, goods and food. San Antonians know how to have a good time.

My parents are now settled into their apartment in our same complex and we’re eager to introduce them to our home away from home. Fajitas are on the menu for tonight. If all continues to be stable at my next bloodwork check on Thursday, we may do a beach trip to Gavelston. We shall see. I can’t plan more than a day in advance, but I’m getting to be much better about accepting that. My body doesn’t leave me much of a choice. I’m learning to embrace change and uncertainty, learning to take things one day at a time and not be so hard on myself.

Sure, I don’t feel stellar by any definition, but how can I complain? Right now I am on a lounge chair by the pool under the shade of a palm tree in 90-degree heat. My mom is belly up on a lounge chair to my left reading US Weekly. My husband is belly down on a lounge chair to my right listening to TED talks. My dad is in the apartment just a few yards away catching some zzzzzs. Bob Marley is playing from my MacBook speakers.

Dodo

After three days off of my treatment pills I was called into the cancer clinic on Monday to check my blood cell levels to see if my bone marrow had been able to make the required cells on its own. If it did, I would start back up. If it didn’t, they’d shoot me up with a marrow stimulator.

The technicians in the blood draw area here cannot access the port in my chest. To do that I have to go to another floor to get the needle put into it then come back down to have them draw from it. Partly out of laziness and partly out of the desire to make my time in the clinic as short as possible I’ve been opting to deal with a needle in the arm vs. all the steps and extra waiting it takes to get my port accessed. Short-term pain, longer gain. From this point on, I’ll probably make the extra effort to actually utilize this third nipple for what it’s supposed to do, which is keep me from becoming a pin cushion.

To no surprise, they’ve had to do a lot of fishing in my vein to get around the scar tissue built up there from the ABVD treatments. This hurts. Like hell. Needles never bothered me but these days – after almost two years of near-weekly blood draws – I’ve become more needle shy. It’s like when I bring Sammy to the vet for a check up. As soon as she sniffs the place her fur spikes on end, she glues her body to my leg and trembles against it knowing that the shot to her hip is coming.

I stuck out my right arm and promptly looked away and breathed deeply as I read the wall full of Christian poems and Bible passages. After reading the Xeroxed copy of “What Cancer Can’t Do” for the third time I realized something was up. The technician was doing a lot of tisking and a lot of arm tapping looking for a “good” vein. These signs are never promising. She tied the rubber tunicate and told me to pump my fist.

“Here we go, sistah … little stick,” she said, shifting her heavy weight on her little stool with wheels. It wasn’t the initial stick that hurt. I can take pain. It was when the fishing began and her breathing got heavier than mine. She was wiggling that little sucker around in there like she was unsuccessfully trying to thread a needle. The needle was in my vein but no blood was coming out. Her manager must have seen the sweat on both of our faces and came around the corner and immediately swooped in. She reached over the sausage link fingers of the tech wielding the needle and started going at it herself. Just as the stars came into my vision, a vile was transferred to the tube meaning that the blood was coursing and the fishing was over.

I wanted to cry and scream but I did nothing except listen to the techs in the break room laughing from deep in their bellyies and howling “Lawdy this” and “Lawdy that” in their Southern drawls as my tech struggled with the butterfly release and told me to put pressure on the square of white gauze she covered my access hole with.

I got back to the waiting room and greeted Craig with what was obviously a distraught face because he said: “Not good?”

I could only shake my head ‘no’ and pull my sunglasses over my eyes as I felt them welling hot with tears.

Before I could e-mail my trial nurse to tell her that I finished, I got an e-mail from her saying that she was so sorry but that the scheduler had forgotten to put in another test that was needed. In short, they needed another vile of blood and could I please go to the other lab.

Because I am on a clinical trial, for this particular research blood they could not use my port without doctor’s consent and I was so tired and so wounded that I just wanted to get it over with. Begrudgingly, I laid my other arm on the chair rest to be attacked. This particular technician apologized many times over seeing that I already had fresh gauze on my opposite arm. It was not a good start to the day. Ouchie.

The blood work revealed that my Neutrophils (a type of white blood cell) had in fact bounced back on their own. I was up and over the 1,000 cut-off level so could resume my pills. However, my platelets had further plummeted down to 37 (normal is 140-440). Again, they want to get as much of these drugs into me as possible so they’d rather I start back up and just expect that I’ll need a platelet transfusion at some point soon. I just need to watch for any signs of bleeding as if it starts, I won’t be able to clot.

Finally, I was out of there. I was pretty tired and very frustrated, but despite Craig’s urgings for me to go home and rest, I wanted to do some further Houston exploring. To Hermann Park it was. A few buses later, we were there. It was very hot and sunny and I was stupidly wearing jeans. I was dressed for the chilling cold of the air-conditioned cancer center environment, not the Texas elements. We also badly planned a feeding period. I have no appetite so it didn’t matter to me, but Craig was quickly running out of fuel.

Our assumption that the park would be a flurry of food options was dead wrong. After walking across much of the park, which is in fact a very beautiful green space, we discovered that the only place for lunch was inside the property’s Houston Zoo. But, we’d have to pay zoo admission to be able to get past the gates.

Craig was fading fast; It’s hard work trying to console a teary Karin. We made the decision that we were already there and we might as well check out the zoo. I’m actually not a big fan of zoos. I get sad looking at the animals in the cages and I just couldn’t shake my germaphobia. There were kids and wild animals everywhere.

We were already in the gates checking the schedule for the sea lion feeding demonstration when I said:

“Sorry; I can’t do it,” and burst into tears again knowing that the treatment effects had beat me for the day. My body had just completely given out. We knew there was a 30-minute guarantee so Craig bolted to the food stand to get some sandwiches for us while I hobbled out choking on my tears, hiding behind my sunglasses until I found a bench in the shade to wait under.

I watched Craig at the ticket booth, arms raised in protest, and could tell that the 30-minute money-back guarantee was anything but a guarantee. Luckily, my husband is a whiz at wheeling and dealing and we didn’t feel guilty at all using the cancer card in this case. I saw him gesturing over to me, forehead rested on my hand, elbow rested on my knee with my jeans bottoms rolled up as high as they could fold as I was completely overheated. After a manager was called in, we got our money back.

I wanted to be back in the apartment so badly as I was so tired and was even more frustrated that we had to argue our way out of damn zoo entrance fees. Shit from the sky then rained on my pity party. I felt a splat on my forearm, looked down and saw some freshly digested berries, deep purple in color, the feces painted on the bench back like a crime scene. Obviously I cried and shook even harder behind my sunglasses. Craig walked up, food in hand, as I squirted Purell on my human litter box. This made us both laugh some (It was even funnier the next day when Craig got a bird poop right to the forehead. Many have told us that this is good luck.)

We found a shady tree to eat our wraps under and discovered some peace in the cool breeze by the pond. I was still in a funk: very sad and missing home, especially missing Sammy. Hot, tired, achey, and barfy.

Then seemingly out of nowhere came what I like to pretend was a Dodo bird. Whatever it was, it was a huge bird with gnarly red gizzard looking substances all over its face. It was limping just like I was and had found its own resting spot under a bush a few feet from us. We couldn’t help but laugh at this and I suddenly became more concerned about the welfare of this massive fowl than my own issues. Did it escape from the zoo? Was it hurt? Should we tell an official?

When it suddenly stood on its horned webbed feet and started hobbling right toward us at a good clip, my sympathy stopped and fear set in. All I could think was this thing was going to honk me in the ass and I’d bleed to death without my platelets.

Sometimes it takes a Dodo bird to get you off your ass and help you shift perspective. If it weren’t for that thing I don’t know if I would have ever been able to peel myself back up from the grass. Brave Craig headed right for it with the camera while I started running in the other direction in protest of his boldness.

I don’t think I spoke a word the whole train ride back to our place. I know I didn’t on the walk from the station to our apartment. I didn’t have the energy to speak and walk simultaneously and I didn’t want to wait for a cab. I wanted to be “home” and at the time it felt that my legs were the fastest mode to get there. When I run out of energy I also run out of patience and I rely on no one but myself. We got back to the apartment and I collapsed into the cold black leather of the living room sofa. Craig literally spoon fed me ice cream and forced me to drink threatening to call an ambulance unless I could tell him my birthday and my parents’ names.

I mustered: “June 29, 1982. Paul and Laura Dubreuil” in a faint voice whispered through dry lips before I fell into a deep, hard sleep.

....................

A little Dave and Tim performing "Dodo" (ironically appropriate lyrics):

Dave Matthews "Dodo" lyrics

Once upon a time
When the world was just a pancake
Fears would arise
That if you went too far you’d fall

But with the passage of time
It all became more of a ball.
We’re as sure of that
As we all once were when the world was flat

So I wonder this
As life billows smoke inside my head
This little game where nothing is sure, oh
Why would you play by the rules?
Who did, you did, you
Who did, you did, you

When was she killed
The very last dodo bird
And was she aware
She was the very last one

So I wonder this
As life billows smoke inside my head
This little game where nothing is sure, oh
Why would you play by the rules?
Who did, you did, you
Who did, you did, you

You say who did, well you did, you
If all the things that you are saying love
Were true enough but still
What is all the worrying about
When you can work it out
When you can work it

Oh I wonder this
As life billows smoke inside my head
This little game where nothing is sure
Why would you play by the rules?
Who did, you did, you
Who did, you did, you
You say who did, well you did, it’s you

The First 12 Days

Little did we know that so many people were converging on Houston during the same time that we would be here. Let’s see. We’ve been here since March 29, 11 days, and we’ve seen the Red Sox play the Houston Astros; free concerts by Sublime with Rome, Kings of Leon, Pat Green and Kenny Chesney perform; We saw the UConn Huskies men’s basketball team play in the Final Four – and win the National Championship to boot. From house seats we watched Lady Gaga’s Monster Ball concert and had the chance to see Craig’s cousin, Chevonne, perform right there along with her. Not bad, Texas.

And it’s not only been the famous or the athletic elite that we’ve been surrounded by, but also so many amazing friends, even though we’re 1800 miles away from home. We stayed our first week with our friends from high school, Mike and Brenna. Joining us for the UConn action and Texas eating was another friend from high school, Kevin, and his fiancée, Sam. Also, we met up with Craig’s fraternity brother, Jon, at the National Championship, who came all the way from Chicago and who we haven’t seen since our wedding. We watched some of Kings of Leon from a high-rise balcony with two more friends, Jen and Kathryn, we know through my brother-in-law. And my childhood best friend’s husband, Luke, met up with us for dinner while he was here on business.

Unreal serendipity and tremendous kindness by people all around have blown us into Houston with a bang. However, there still has been that old cancer thing, the reason that I am down here. But I couldn’t even fathom a better balance to all of that junk.

The treatment that I am on is not a type of chemotherapy. It is a targeted therapy in its experimental phases. Even so, the data so far has proven that these drugs have worked well to inhibit the protein cells that can drive Hodgkin cells to grow. It’s the combination of these two drugs that is still experimental. Because these oral drugs work in a completely different way than traditional chemo therapy, taking them is the best shot at getting me into a complete remission as my particular disease has proven many times over that it is resistant to chemo.

I had my consult with Dr. Younes and his nurse practitioner, Amy (who I work most closely with), on Tuesday. They all agreed with the recommendation from my team at Sloan-Kettering that the Panobinostat (LBH589) and Everolimus (RAD001) trial was the one for me. They had reviewed my case and all of my scan results back to first diagnosis all the way through my treatment path and reiterated that my disesase is highly refractory and that allogeneic stem cell transplant will be the only way for a long-term disease-free remission (there is no cure). It was also agreed that I need to be in a near-perfect remission before that can happen and that these drugs will hopefully do that.

It is difficult to hear everything that I’ve been through over and over again. It’s part of a new doctor’s routine to run down the list of all the procedures, drugs, relapses that I’ve had. With each mention, I have to relive it again – all of these pictures of woozy pain come to mind and I feel everything all over again. Even the mention of the drug Melphalan brings me back to “Day +1” of my autologous stem cell transplant, which was full with stomach pains, tears and fear. This is the difficult part about seeking additional opinions on my medical case. I have to talk about it all and hear about all the grave statistics all over again and again.

Despite my medical history that clearly shows this is where I need to be, the rules had to be bent for me a bit to get onto the trial, which has many inclusions and exclusions, as do all scientific studies. I had a CT Scan at MD Anderson, which was read as having no disease significant enough for me to be able to receive treatment and that with only some very small lymph nodes lighting up in my chest that I should be in a good enough remission for transplant. This was a shocking phone call to get. I had just woken up from a deep nap in Mike and Brenna’s spare room to a phone call that apparently my cancer had retreated since my grave results at Sloan just two weeks before. I said out loud to the crew: “Man, I take one little nap, wake up and we’ve suddenly got tickets to the Final Four and I no longer have cancer. What?!?!” The positive side of me hoped that the SGN-35 had just needed a couple more weeks and had been continuing to blast and burn cancer. I even called my sister to tell her to be at the ready, that this transplant might be happening sooner rather than later.

That news lasted for only a short while: April Fools! I got the call on Friday, April 1, that reverted everything back to plan A. My Sloan team, who knows me best, conferred with my MD Anderson team to have them look closer at my PET Scan taken there and all agreed that I have significant bone disease. Disease in the bone does not show up on CT Scans, but my PET is certainly lighting up. So, it was decided that the CT requirement would be waved and we will instead use PET Scans as the baseline and follow-up tests to see how the drug is working. I have so many ridiculously smart people advocating for me and so much burgeoning science in my corner that I have no doubt this will work.

I took the pills home from the hospital pharmacy on Friday in a brown bag and took them in the car. The LBH589, which I take 3x per week requires it be taken with a 250ml glass of water and the RAD001 requires me to be in a fasting state – nothing an hour before, nothing an hour after. I need to space them out by 30 minutes so that if I “upchuck” as Amy said, I’ll only lose one dose of medication. Other than that, no restrictions. They are not horse-sized pills, which is good and one is even coated like a Tylenol gel capsule so that is even better.

After starting, I was well enough to be out and about, but my body was pretty wrecked over the first several days. Friday was overall fine. On Saturday, day 2, things really hit rock bottom. It felt like someone was inside my stomach twisting and wrenching my intestines and then everything got rejected in a violent spewing way that was unlike anything I’ve ever seen. Of course, this feeling did not come on until we were in a train car on the way from Kings of Leon to Reliant stadium for the semi-final game packed body to body with painted face, sweaty college basketball fans. I had to bail two stops before the stadium and run/waddle to a bathroom, with poor Brenna frantically helping me search for any public restroom. I made it to a stall by a very uncomfortable margin. And we made it to the first game by half-time by an even narrower margin. I had blurred vision and dry mouth but that UConn vs. Kentucky nail biter kept me screaming and on my feet just the same. This bathroom adventure is highly worth its own blog. For now, that’s just a teaser. It was the stuff of fiction.

The achy intestines remained all the way through Monday. I only picked at food and tried to drink as much water as I could. We all lazed most mornings and took it easy/napped during the afternoons in order for all of us to save energy for each evening’s festivities. It was kind of nice to have everyone on my same schedule; the excitement of the Final Four fever took a lot out of all of us. I was dragging heavily by Sunday night’s Kenny Chesney concert. The GI side effects had moved from my stomach to my esophagus, which felt as if someone was shooting a blow torch down it – everything was raw and ravaged. Choosing to pick at spicy curly fries from our blanket perch at the outdoor concert was probably not the best choice on my part either. But chances to see Pat Green and Kenny Chesney perform do not come every day and I was not going to miss it. I’d rather be there in the fresh air with Kenny crooning about Yoo-Hoo bottles rolling on the floor boards than be curled up in a ball in bed. I was going to be uncomfortable no matter where I was so I chose atop a tapestry on a grassy knoll with my husband and four great people.

Before treatment started I did get a good dose of Texas cuisine. I was happy to have gotten in one drive-thru margarita from the pick-up window. We’ve eaten super spicy jambalaya, Texas size Po’Boy sandwiches, burritos and breakfast tacos to the max. After I started treatment last Friday, April 1, I’ve lost all appetite, unfortunately. I have to force myself to eat and am still trying to do that the best I can. Little bites like a baby bird.

My body aches were also pretty bad those first few days. I still feel it where the cancer is manifesting in my bones. My hips and low back get very tight and tense. Tylenol does help though and I haven’t needed more than that. I’m sure that all of the packing, traveling, stress, anxiety, confusion, and overwhelming events contribute to the body aches as well.

After starting the clinical trial, I also met with a transplant doctor and his team at MD Anderson to get their take on my situation. He was in agreement with Hartford, Yale, Dana Farber, and Sloan-Kettering that an allo transplant is my best opportunity for long-term remission, despite the risks that allo transplant can carry. He also gave me further hope saying that because I have a perfect match and because I am young that that risk factor of severe graf vs host disease is highly reduced. Consistent with Sloan, they have a 30% success rate and here they have performed allo transplants on 25 patients with refractory Hodgkin’s who have also failed autologous stem cell transplants. As I quote from him: “Your biggest risk to you is the tumors, not the transplant.” It is also encouraging (I know, strange to say) that though my disease is widespread in my body, there are no bulky masses. He agreed with the great promise of these clinical trial drugs and said he fully expects that I’ll have a very near complete response from them.

The transplant conditioning regimen and protocols at MD Anderson and Sloan-Kettering are markedly similar and the doctor here saw no reason why I shouldn’t get my transplant at Sloan, which is so much closer to home. In fact, the director of Sloan’s program was recently the same guy who directed the one at MD Anderson. It was assuring that all are in agreement on my proposed plan of care. The key will be to move very, very quickly as soon as I show a sufficient response to this targeted therapy. I can’t let things wait as all of these doctors have told me that with my quick-relapse history the drugs will not put me into remission for any significant amount of time, but that the immunotherapy with my sister’s stem cells potentially will. The disease in me is “very resilient” to quote one doc. It is still not as resilient as I am.

Follow-up has been a close watch on my heart and on my blood counts. I need to come in to the cancer clinic once per week for an EKG and to check my blood cell levels. This past week’s EKG showed some possible abnormality but nothing of high concern. As a precaution they have set me up to see a cardiologist this coming Tuesday who will do a closer analysis of my valves and heart functions. Chemo and cancer can cause crazy things to show up on these reports so they’ve assured me not to be worried, but that they are just being especially cautious. This of course makes my heart pound heavy and makes me nervous as hell for my little heart, but I’m getting a better control on that anxiety. Craig tells me that unlike the Grinch, my heart is probably just two sizes too big. I hope that’s all it is.

The blood taken from me on Friday revealed that my levels have plummeted quickly to the point that I needed to hold my pills that day and all through the weekend. My platelets have dropped to 68 (they need to be 75 to stay on the drugs) and I am now considered neutropenic again as my white blood cell count is down to 1.7 and my ANC (the number they are most concerned with) is under 1,000. I can’t safely start the pills back up until those numbers climb back to required levels. This is not uncommon and my nurse, Amy, told me in the beginning that none of the 20 or so others who have been on this trial have been able to take this high of a dosage every day without having to hold the pills for a few days. It is a bit frustrating that it is not the side effects that I can’t handle – I’m doing fine with them. It’s the functioning of my bone marrow, which is something I have absolutely no control of.

Neutropenia means that my immune system is near non-existent, so I need to be diligent on good hand washing, food safety and all of that jazz. I probably should not have gone to the Lady Gaga concert Friday night, but my counts have been much lower in the past, I was feeling fine, and I used a lot of Purell. Again, I have to weigh the risks and the rewards in these types of situations. There are many months to come when I’ll be locked up in a hospital room so I’m spreading my wings as wide as I can right now.

I’m finally starting to find a balance between activity and listening to my body’s needs as I realize the effects that this drug has on me. Fast forward to today, Saturday, eight days after starting the trial, six days worth of pills in my system. My GI tract is completely back to normal and the heartburn, fire-in-my-chest feelings are gone. The sores in my mouth and the soft lining of my esophagus that I thought were cropping up last week have also dissipated. I am very tired, the fatigue exacerbated by the low blood counts. My appetite is still nill, but food is much better tolerated. I’ve gotten back onto a blander, healthier diet that includes more snacking/small meals throughout the day.

We are settled into our furnished apartment and I’m currently writing from a lounge chair in the hot shade by the complex’s pool. This makes every cell in my being feel happy. The sunshine and warmth make a huge difference. Our place is brand new with a kitchen way nicer than ours at home, a separate bedroom with a comfy bed, washer and dryer, a first floor balcony, spacious bathroom and shower/tub. It has all of the makings of a home away from home and Craig and I are very comfortable here. It was a perfect choice and I am so grateful to the mother of a fellow Hodge warrior who recommended it to me (Thanks, Nancy!).

Even though it is 88 degrees and I love exploring the culture of Houston – my first time in the South – I do miss home, my family, and my pup Sammy very, very much. My parents fly in for a 10-day stay next week so we’re both really looking forward to that and our very special friend who is dogsitting Sammy for us has been sending us a good influx of adorable pictures of her with her doggy friend, Ruby. It’s a vacation for Sammy as well, I suppose. I hope she remembers us.

I am very fortunate to have the husband that I do and to have him here with me. If I were here alone I literally don't know that I could function. Two heads are much better than one in handling all of this, especially when my head is detached sometimes. He found an iPad app that records all of the conversations we have with doctors and he asks the questions that I sometimes forget I wanted to. I've been very weak and my endurance very short so he's been my mule – to put it in a very unromantic way. Craig has been doing a lot of schlepping of suitcases, medical record binders, grocery bags and household goods so that I don't have any extra weight to carry when walking to the train or bus. He keeps me laughing and in good spirits and he keeps me on top of things and has become the social coordinator and public transportation navigator as we do not have a car here. We make a good team.

All in all things are settling in on all fronts. I’m told that the third and fourth week on this trial will be the toughest – something to look forward to. Right now I am okay, but I do hit major walls, which leave me with no choice but to lie down and sleep. It doesn’t take much to completely deflate me of all my energy and the deflation doesn’t come gradually. It happens with one big pop. On Monday I will head back into the cancer center for further bloodwork. The hope is that my body regenerated enough blood cells on its own to get me up to snuff over this weekend, but if not, they’ll shoot me up with some bone marrow stimulating shots. I’m okay with being on a pill break for the next couple of days. My body could use the rest.

Houston Highlights:

4-10 blog pix

Chemo by Mouth?

I will write in much more detail soon, but here is a very brief update:

We made it here to Houston, TX, without a hitch and have had fabulous accommodations with our friends Mike and Brenna who have been incredibly gracious.

My consultation with the MD Anderson lymphoma team went well and gave me a lot of hope that we'll beat this without a problem. There has been lots of back and forth between my team here and at Sloan-Kettering and lots of changes over the past two days i.e. I have cancer, I don't have cancer, I qualify for the trial, I don't qualify for the trial, etc. etc. craziness.

But today, on April Fool's, it all settled. I am enrolled in MD Anderson's clinical trial combining Panibinostat (LBH589) and Everolimus (RAD001). They are both experimental targeted therapy oral medications, technically not chemotherapy as they work in a totally different way to go after the Hodgkin lymphoma cells. It will get those chemo resistant bastards.

I'll take an Everolimus pill every day and Panibinostat three times a week. I took my first two today while riding in the car just like taking an aspirin. I didn't explode and I feel nothing so far, this is good. They want to keep me in Houston for the first month to monitor me weekly with blood work and heart test checks. We've secured a sick apartment that we are moving into Monday or Tuesday for our one-month stay.

It's estimated that the side effects won't set in until the third and fourth week - mouth sores, low blood counts, GI fun, but nothing crazy. So, until then I can just live a totally normal life being in constant contact with my nurse practitioner with any strange symptoms. They'll likely have to keep adjusting my dosage for this first month as no one on this trial has been yet able to maintain the highest dosage without a break. We'll be in constant contact about my symptoms and especially how my platelets are holding up.

So, with that said, we're going to all the free Final Four concerts happening here: Sublime, Kings of Leon, Kenny Chesney and we're actually getting to see UConn play at Reliant due to a totally unexpected surprise from some very special people. Final Four, Baby!

It is expected to be in the mid-80s and sunny all weekend and this makes me very happy. We've sampled the Mexican and the BBQ food, and I'm looking forward to eating my way around Houston. My nurse, Amy, told me today that they don't want me to lose weight so I should eat anything and everything. Will do.

Houston, Here We Come

"From chaos comes confusion, and from confusion, clarity."

Looking at these stages I believe that I've been able to remove myself from the chaos and am now deep into the confusion. Clarity will come in time. It's only been a week since I found out that the disease is making progression rather than regression but it feels much longer. I lost all concept of time and space for a little while there and am just now coming out of my recluse.

Craig and I traveled back to New York last Thursday, took in the massive NYC St. Patrick's Day Parade, the new play "Good People" by one of my favorite playwrights, and had a long meeting with my lymphoma specialist at Sloan, Dr. Moskowitz.

She gave us further information about my disease status and pulled up my PET Scan pictures so that we could view the cancer in raw detail, visualize what it is that I'm working on eliminating. It has returned in my chest – the same spot to the right of my trachea just above my heart, my sacrum, pubic and hip bones, my back and a rib. As hard as that is to swallow, my disease is not considered "high volume" at this point. Though, we need to put a stop to the growth.

Dr. Moskowitz suggested I consider a clinical trial being hosted at Sloan-Kettering for PLX3397 as well as as a clinical trial at MD Anderson in Texas that is combining Panobinostat (LBH589) with Everolimus (RAD001). Although each of these drugs is in very early development and even more immature in their use against Hodgkin's lymphoma, there is a bit more data associated with the MD Anderson trial therefore that seems, at least right now, to be the best place to start. She has secured an appointment for me with Dr. Anas Younes, a world-renowned specialist in novel therapies and clinical research for lymphomas and the lead on this particular study.

So, Craig and I are hopping a plane to Houston, Texas on Monday afternoon to see what we can glean from this doctor's expertise. Who knows, he may suggest a completely different protocol or trial once he looks at my specific case. All three drugs that have been at the top of the list are oral chemotherapies which target different proteins suspected to be active and present in the growth of Hodgkin lymphoma. Unlike SGN-35, which is very close to FDA approval, these drugs are only in Phase I or II trials meaning that scientists are still trying to figure out the highest safe dosage and the drug's efficacy.

I am incredibly impressed with the amount of investigational drugs that are out there being tested against refractory Hodgkin's. That gives me a lot of hope for options and that "key" that I am seeking, though of course it is a little scary not having a lot of data on their safety in humans. My biggest hope is that the first one we try is the one that gets me into a solid remission. This is why this initial decision is so important and why I've been pouring over any information that I can get my hands on.

The Hodgkin lymphoma community (the refractory one especially) is a close knit one and I feel so fortunate to have so many people out there willing to help me out with this decision and connect me with the smartest minds out there. There are very helpful lymphoma web forums, Facebook pages, and fellow patients' blogs. I've made many friendships along this journey with others going through similar experiences and it really set in this week how much they have my back. Before I even got to the lymphoma board, others were talking about my case and asking for suggestions of where to point me.

Fellow Hodge warriors and stem cell transplant survivors have forwarded my situation/case to their oncologists, offered to connect me with appointments, spoke with me by phone and extensive e-mail conversations, sent me helpful links and encouragement. Big, big thanks to Bekah, Tiffany, Steve and Jen, Nancy and many new people that I've "met" from all over the nation that have taken the time to contact me about their experiences with these trials and transplants. Ethan Zohn, my friend and Survivor: Africa winner has been absolutely instrumental pulling every connection of his for me filling my inbox with recommendations from lymphoma specialists from LLS, Livestrong, Stand Up 2 Cancer, National Institutes of Health, Gabrielle's Angels and more organizations.

I also met today with my local oncologist, Dr. Dailey, who has been with me from the beginning. It was so helpful and calming to hear his thoughts and careful consideration of my situation. He is supportive and thoughtful in his gentle guidance. I realize how fortunate I am to have so, so many advocates.

And it's not just those who have provided medical advisement over this past week, but once again, the incredibly outpouring of love and inspiration and encouragement from friends, family, and complete strangers. It is that huge web that keeps me afloat especially when I am completely tapped out of strength myself. I feed off of that energy from others and am so grateful for that support which has stood the test of endurance over the hills and valleys of the past nearly two years. You help me to climb back up again.

Recovery from this set-back has been difficult, but I'm pretty sure I'm on my feet again. Much credit goes to my husband who I've now started calling "Clarity Craig" and of course Sammy who's snout is there nuzzling my arm to pull me out of bed every morning. And of course, my parents who swept me away to the Connecticut shore for a walk along the water and the first lobster roll and swirl soft-serve cone of the season.

My mental capacity is pretty tapped. My body is very tired. I can't be on any kind of steroids to alleviate the inflammation, sweats, cough and back pain that I'm having from the cancer growth as a course of them might preclude me from certain clinical trials. I do not want to limit my options any more than they already are. I'm coping through breathing and yoga, getting what sleep I can, and the assistance of a new seed-filled aromatherapy microwaveable heating pad that has become my security blanket.

I get weepy and I get angry and I get frustrated depending on what time of day it is. I cry often and haven't yet been able to talk about things without developing a huge lump in my throat. It probably goes without saying that there are so many lingering questions about the best course of action that it is tremendously overwhelming. It feels like I've fallen down a narrow dirt hole with my arms stuck over my head. From this awkward stance I'm slowly crawling my way out toward that light at the top, one foothold at a time, collecting a lot of dirt under my fingernails.

Vegetable and fruit pushing is ramped up to high intensity mode and so has eating in general. I do not have an appetite and I am losing weight so am making a very conscious effort to eat as much as I can and get in as many nutrients that I can – case and point the kale, cantaloupe, avocado, coconut water smoothie I am choking down right now. (It's actually quite delicious). I must do everything that I can to keep myself strong and healthy for whatever treatment course I face next.

More information is needed before I can make this decision but I know that going to MD Anderson, which is right up there with Sloan-Kettering for best cancer center in the nation, is the right move. We'll see what they have to say. On March 31, I once again become eligible for treatment as I will be 28-days off of SGN-35, a requirement for the majority of these trials. I want to be ready to roll when that date hits.

Big bonus, our good friends Betts and Brenna just moved to Houston this summer and are opening their doors to us. It'll be wonderful to see them and crash in their apartment. I'm especially excited to lounge by their complex's pool in the 80-degree sun. It is snowing here right now so the idea of flip flops and sunscreen makes me smile from my curly locks to my tootsies. It'll be a perfect balance to the numerous medical appointments and tests at the cancer center.

We've got to get to packing our bags – again. We've never been to Texas.