Mixed Results

No better way to start the day!

My late friend Steve (ugh, “late” sounds so formal and awkward). Try again: My very good friend, Steve, that died from complications from this f’in disease and that I miss tremendously every day, once told me that at some point, news just becomes news.

News is what I got yesterday after having my first PET Scan to assess the effectiveness of this Bendamustine/Brentuximab Vedotin clinical trial. It’s not necessarily really good. It’s not necessarily really bad. It’s just news that I now have to deal with. This news directly affects my life, so I kind of have to pay attention, as little as I want to pick up and recalculate.

I am coming off of this trial. It is not working for me. Another treatment that just couldn’t get the job done. It’s getting frustrating and exhausting for sure. I desperately miss stability.

Wednesday was a long, long day. My mom started at 5 a.m., driving to pick me up at 6:45 a.m. to start the trek into the city. That’s a devoted mama. I had to have my scan at the hospital way uptown in the Bronx. It’s very old hat, but it’s still not fun. I had to get both a PET and a CT Scan to be able to best analyze both my bones and my lymph nodes, respectively. That means I had to lay in two machines, drink a full bottle of “banana smoothie”-flavored barium sulfate, be injected with the PET Scan radioactive diodes, and then be injected with contrast for the CT Scan, which goes in while you’re in the machine and makes your whole body so hot that you feel as if you’ve wet your pants. This is all after not eating since a midnight snack the night before.

We then had to travel to midtown Manhattan where my doctor’s clinic is and we would go over the results and formulate a plan. Waiting for those types of appointments to start, especially, is hell. Waiting for 2.5 hours is even hotter hell.

I fell asleep in the waiting room, so deep asleep that I let out a fart and then started laughing. All those contrast chemicals make me gassy! My mom rolled her eyes and tried to cover it up and not start laughing hysterically herself. No doubt the other people in the room heard. I was too tired to care. Then, we both fell asleep intermittently in the exam room where we waited more. It was so hot in there and the walls began closing in after a while. We played some word games on our phones. I took walks to the bathroom to make sure to make my presence known.

After two hours we were punch drunk with exhaustion and anxiety about what news the doc would bring in. It just got silly and at my mom’s request I started doing interpretive dances to express how I felt at that moment. They mostly consisted of lyrical hand motions that utilized the middle finger and classic movements to denote “f you’s” like the hand sweeping from the base of the neck out at the chin level or falling to my knees, arms making a circular wave until they rested right forearm under left forearm parallel to the floor, right hand making a fist at the world. Classic swearing-through-hand-motions.

Finally, we saw the doctor and his team after they reviewed my scan with the radiologist. The results are “mixed.” Dr. O is as frustrated as we are in that he wants so badly for something to work for me for more than two seconds in a seriously effective way. The disease in the bony areas has either resolved or reduced everywhere, including my pelvis, which was pretty jam-packed. However, there is new growth in the lymph nodes of my left neck/collar bone area.

I am not surprised by this. I have been pointing out swollen, palpable nodes in that area for six weeks now. They popped up just after having my first infusion of this. We were hopeful, however, that it was instead cell death causing fluid build-up and inflammation. I knew otherwise. I’ve palpated my lymph nodes for a long time now. Now it is confirmed by the way it was showing on the scan that it is in fact disease.

It is curious that disease would grow like that in one area even though I was receiving two drugs very well studied to work against HL, as proven by how they worked against the bone disease. We’re tossing around the idea that maybe the disease has morphed into another type of lymphoma and I could be dealing with something completely different than HL in this lymph node area. Dr. O doesn’t think it’s likely, but does think that it’s plausible. He’s seen it before.

I’m contemplating having the area biopsied so that we can know for certain what we’re dealing with. I need to weigh the risks of that with the benefits and realize that it’ll delay my treatment some as well. My gut right now is telling me we should check it out, especially since these lymph nodes are so easily accessible. I have not had a biopsy to look closely at the disease tissue since November of 2011 when I relapsed after my allo transplant. I have some more thinking and opinion gathering to do surrounding this option. If I am dealing with a different type of lymphoma, that will open up a whole new door of treatment options to better target it. If it is still HL, then at least we’ll know that we’re focused on the right treatments.

Regardless, my number one task is to try again to wean off of the Prednisone completely. If my body can do that, then it opens back up the trial of the NAE inhibitor being hosted at Columbia, which seems like a next best option for me. I was about to start it before this trial, but participants are not allowed to be on any steroid while enrolled. When I tried to come off, shit went crazy. We’re hoping that with less disease in my bones, I’ll have less pain without the steroid. I drop by half today.

There are a couple of other clinical trial options at Columbia as well. Traditional chemotherapy is off the table for me. My bone marrow is too sensitive, as proven by how anemic I got and how low my platelets dropped on this trial, which is only one-part, very low-dose chemo. The short-term gains are not worth the side effects for me at this point. Plus, the well is fairly dry. I’ve tried most all chemo drugs traditionally used against Hodgkin’s, except some very harsh regimens that we’ll save for emergencies only.

I’ll delve into more research this weekend to see what else is happening out there in the lymphoma world and need to make some decisions by early next week. I’m gearing up – again – for another new chapter and everything that that brings. I’d rather just sleep. 

Regaining Stability

When there are times as a grown woman that I have to be as dependent as a newborn, I latch onto the times that I can be independent with vigor. Sometimes this causes a riff between those who want to take care of me and me, but I have always enjoyed spending time with myself and the feeling of accomplishment of doing something on my own. When I can be functioning by myself again is when I know that I’m past the peak of whatever current hurdle I’m jumping. I’ve grown up and am much better at asking for help when things get messy and unmanageable, and I’m also better at asking for no help when I know I’m perfectly fine – like a kid who doesn’t want his mom to catch him at the bottom of the slide anymore.

My pain was under control as of Tuesday evening with the placement of a pain patch on my belly. It delivers very low dose, continuous medication to manage the bone pain I’m experiencing in my pelvis and will keep experiencing until the initial tumor blow-up process is complete. It cuts the pain completely, without leaving me overly drowsy and loopy and eliminates the up and downs of oral medications and the nausea they leave me with. For the first time, ever, I have an actual pain management plan. I’m grateful I’ve made it this far without having to have one, but now that I do, am grateful that I’m with a team that has done so much to ensure my comfort.

My patch and I took the train in on our own, eliminating the need to do any driving by taking Amtrak from a more local station. The seats were comfortable, the train car was warm, and I was able to work on some writing with power and WiFi access. I dressed up in business casual clothes as I felt in a business casual mood, not a cancer patient mood.

From the Penn Station cab line, I stepped into the most Zen cab I have ever had the pleasure of driving in. Zen and New York City cab are usually pretty far apart on the relaxation spectrum. I closed the door shutting out the sounds of the insanely busy hub that is this midtown transit center and was surrounded by beautiful notes of classical music. I told him where I was headed. At the first stop light we hit, I noticed that he pulled the New York Times crossword puzzle from the console over to his lap. He scanned over the clues and I saw that most of it was already filled in.

“What a great way to pass the time at stoplights,” I said to him.

“It’s what keeps me sane,” he said, and continued to explain to me the relaxing atmosphere he works to create in his cab. “The only complaint I get is that I don’t drive fast enough. But I won’t do it; I’ll have them get out and find another cab.”

He was in his late sixties, intellectual grandfatherly looking, wearing thick frame glasses and layered sweaters. He told me how he owned his cab, so he likes to keep it in good shape rather than slamming the brakes and the gas all the time as others do. I told him how one driver had taken me on a ride right over the sidewalk when he got too impatient with a garbage truck blocking he road ahead of us. We laughed.

We talked about my writing. I explained the difference between blogging and "Twittering". He told me about his time working as a men’s clothier in the city, but how he moved to North Carolina to raise his kids. 

It was like joining someone over a cup of Earl Grey. He dropped me at the clinic and told me he’d look for me at Penn Station again, though admitted that in the four years he’d been driving, he never drove the same person twice.

My 11 a.m. appointment actually commenced at 11 a.m. – and it was done at 11:45 a.m., the last 15 minutes just spent talking about the impending blizzard, the benefits of California, and skiers vs. beach bums with the nurse and clinical research coordinator. The team had to do vitals, a visual check-up and take lots of bloodwork from me as part of the protocol. It was smooth and easy. All blood counts look great.

I confessed my worries and insecurities about being on the pain patch to the nurse. I told her I was worried that with each lasting 72 hours, what if my pain goes away and I’m covering up nothing? What if I get addicted? Should I try to stop it, see if the pain comes back, then wait another 13 hours for a new patch to kick in? She calmed me by looking me straight in the eye and saying:

“Do you feel okay? Are you pain free?”

I nodded in agreement. It was as if I felt I wasn't entitled to that. 

“Then just go with it,” she said and told me that with all that I have to worry about, being addicted to pain meds is the least of it. I am on a very baby dose and those that get addicted are those that are using drugs without having any pain. These pain patches are much safer than popping lots of pills as it keeps things controlled and consistent and not so harsh on the body. She explained that these drugs are built for pain like mine and help calm all the receptors that go off when the body is experiencing pain so that I can sleep and eat and heal, which is very important.

“So just relax, let it go, let’s not do any experimenting right now,” she told me, knowing that I’ll be traveling to San Francisco next week. I can breathe easier after our little talk and am accepting this help that my body needs right now. I know it’s eliminating lots of physical and mental stress, which is certainly a good thing.

With three hours to kill before my train home, what was a girl to do on Fifth Avenue in mid-town Manhattan with a 3-story H&M right there on the corner? I lunched on a Panini then settled into the H&M racks for some retail fun, including the purchase of a $15 pair of bright pink pants that make me smile. I then decided to walk the 20 blocks, 2 avenues back to Penn Station. Sweaty from carrying my laptop on my back and with tired muscles, I grabbed a protein power smoothie and sunk into my train seat where I promptly fell asleep.

Today has been beautifully lazy huddled in for the "Blizzard of 2013" with Craig and Sam Dog. Nowhere to be. Lots of entertainment to be had from local newscasters reaching for new ways to say the same thing and their use of ridiculous visuals to illustrate the conditions. There's cookies to be baked. Candles and blankets at the ready. Everything we need. 

Cutting Our Losses

MLN4924 chemical structure

At some point I'll write more eloquently about the adventures of the marathon day that was Wednesday, but these are the bare bones facts that I'm dealing with right now. 

My ESR is 118, indicating huge amounts of inflammation. The lymphoma in my pelvis is growing. At one time it was a couple spots on each side, now those spots have connected and filled in. This area showed up as very hot on my PET Scan Wednesday, then was confirmed further with an MRI late that evening to determine if the hot spot was showing inflammation from cell death or soft tissue growth from expanding lymphoma. Very unfortunately, it's the latter. We know for very certain.

There are no new areas of involvement and the hip/pelvic area and a precarious spot on my femur bone is all we are contending with at this point, but they are spots that can't be ignored. If the lymphoma continues to grow it will break apart my bones and then I'm in trouble and a hell of a lot of pain. I've been given restrictions: no contact sports, no skiing, no running, no kickboxing - nothing that would put me at risk of fracturing that femur or shattering my pelvis. However, I'm encouraged to start lifting light weights, continue my walking and yoga, as these pieces will be vital to keeping my muscles, bones and heart strong. I met with my naturopath today to discuss more diet and supplement answers as well. I hit the machines at the gym. 

We are cutting our losses with the Revlimid and moving on. The drug did give me three wonderful months relatively pain-free and overall "normal" feeling. For this I am grateful. My doctor and I only hoped that it would hold for much longer. But it didn't, and this is where we are. This is my post-allo world. I need to continue to swing from clinical trial to clinical trial, novel drug to new drug combination to get the most time I can out of each one. I am buying quality and quantity of life here and hoping that science keeps pace. 

Next in line is a Phase I clinical trial being hosted by Dr. O at Columbia using a drug too new for a name, but still only known by call letters: MLN4924, a novel inhibitor of Nedd8-Activating Enzyme (NAE). It works in a completely different way than anything else out there. It's a first in its class type of drug targeting a specific enzyme that may be involved with cancer growth. 

After talking thoroughly with Dr. O and his team and consulting with Dr. M at Sloan, talking it through with Craig and my mom, it seems that this is the best shot right now. What's a p in the a is that it will require me to be in New York City for an extended period of time. If space is available I'll likely be staying at the American Cancer Society's Hope Lodge again, probably for about three weeks. The subsequent cycles of the drug will require less testing and bloodwork, so hopefully I'll be able to commute back and forth for treatment though it will be every few days. 

We also have the issue of our San Francisco trip and the San Francisco Writer's Conference. I'm not sure how and if we're going to be able to make this work around the start of my treatment. I have also been cast in a local production of The Vagina Monologues which starts up rehearsals next week with a performance the first week in February. Not sure if I'll be able to take part in that any longer either. There are lots of questions and logistics management that remain. Frustrating and saddening. It sucks. 

Timing is everything in these cases and rules on clinical trials can be strict. It's also unsafe to wait too long to get onto this treatment. Right now I'm dangling here on no treatment with known cancer on the move - not a comfortable place to be. 

Sure, I'm a little angry; I'm very disappointed; and I'm just thoroughly exhausted with the prospect of so quickly having to pick myself back up yet again and gear up for another new treatment and all that that will bring. But I don't have time to delve too much into these feelings as I'm in action and complementary health mode. So much to figure out. 

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

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

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.

SGN-35 Treatment Two

I got through the second infusion of SGN-35 without blowing up or caving in and for this I am grateful and happy.

My mother accompanied me to Sloan-Kettering this time around. My appointment with the doctor was early – 8 a.m. on Thursday so we trekked into the city the afternoon before to avoid wee morning hour travel. My anxiety built for the few days leading up to yesterday. Wednesday I did my usual dragging feet routine. I slept until 9:30 a.m. (very late for me) and found many, many things to do around the house that morning. I didn't get into my car to drive to my parent's house until the last possible moment. I was procrastinating the inevitable I suppose ... the knowingly placing your hand on a hot burner phenomenon.

The train ride in was uneventful. As I usually do, I decided to factor some NYC culture into our agenda so that the trip wasn't solely medically related. I like to have that balance and to take advantage of the time that I get to be in New York City because soon, I'll be confined to my hospital room for many weeks and will be restricted from those things that I love – good restaurants, theater, museums for a very long time. But that is not now so I must live and love them now.

After checking in at Miracle House, we walked to dinner at a Hell's Kitchen hole-in-the-wall Thai restaurant my Manhattan guru Lisa recommended: Olieng Thai. There are just seven tiny tables and the staff is sweet and so friendly. The walls are covered with affirmations, quotes, romantic musings and food recommendations shared by diners who had scrawled with neon pen on the mirror lined wall. My mom enjoyed stir fried veggies of all sorts while I warmed my insides with a fragrant bowl of yellow curry with sticky rice to soak it up with. We topped it off with green tea and shared a fried ice cream – what an intriguing, indulgent combination that is!

In my chemo procrastination/denial stupor I had come across reviews for a play on Broadway called "Time Stands Still," which is running for just another couple of weeks. I fell deep into reading all the reviews, about the story line, the Pulitzer Prize-winning playwright Donald Margulies, the esteemed four-person cast of award-winning actors, including Laura Linney and Christina Ricci. It lived up to its reputation.

I treated for nosebleed seats. We were in – literally – the last row of the theater at the very back of the rear balcony among all of the college theater students, but this truly did not hamper the experience. To see a show of that caliber for only $34 was completely worth the four flights of stairs we had to climb and the initial vertigo we experienced. But for real, the view was completely unobstructed and we were both immediately absorbed in and enthralled by the story. It chronicled a photojournalist and freelance writer forced to leave their adrenalin driven lifestyle of covering wars, genocides and natural disasters due to mental and physical injury and how this drastic change to "mundane" life effects them as individuals and their relationship. It was multilayered, intricate, delicate and so very real. I most certainly could draw some parallels to my own life and some of the lines Laura Linney's character, Sarah, delivered were ones that have come out of my very own mouth: i.e. "Don't touch me. I can do it myself!" as she's trying to manage with a brace on her shattered leg.

As an added bonus to an evening of great theater – the kind of story that I'll ponder forever – we got to meet some of the actors afterward. We just happened to stumble on a crowd and barricades at the backstage theater exit and saw both Christina Ricci and Laura Linney leaving in their street clothes after the performance. Each signed autographs and posed for some pictures. I felt fortunate to have the opportunity to tell Laura Linney how much I enjoyed her moving performance ... and now I have her autograph on my Playbill and a picture my mom was able to snap of her giving it to me. Now I must watch her Showtime series: "The Big C" about finding the humor in a cancer diagnosis.

All of that excitement did wonders for squelching my anxiety about the next morning and for tuckering me out enough to fall asleep despite being in an unfamiliar twin bed on wheels with the even more unfamiliar sounds of car horns and rumbling buses 10 floors down outside our window.

Thursday morning inevitably did come and I woke surprisingly refreshed to the awful sound of my mom's cell phone alarm. Everything but the banana I had shoved in my pocket made it in one piece across the city to Sloan. Nearly immediately after I had my CBC done and vitals checked, we were called in to see the doctor. No wait at all. This is one of the benefits of taking an early appointment.

I presented my nurse and Dr. Moskowitz with the sputum I had caught for them in the sputum collector they had provided for me last time around. It was neon green and at once crusty and tissuey. I told them the color was an added bonus as it presented itself during my sinus infection. But in all seriousness, since my second relapse in July, I've been coughing up very strange objects (what I imagine to be fried lymph nodes). They come from deep in my chest and out my nose after much effort or sometimes just fall into my mouth. They always have the same shape and characteristics – nothing like normal phlegm. On the last visit, the doctor was intrigued by this and asked me to bring a sample. I was happy to be able to produce and am eager to hear what the microbiologists analyze it as. I have another empty spewtum cup for the next encroachment. This time it will go to the pathologists to analyze. How's that for excitement?

I also filled them in about the strange symptoms that I've been having: the left side body heaviness and occasional pulsing and awareness of the blood coursing through my veins and into my heart on that side of my body. It all goes into the notebook. The doctor said how happy she was not to have heard from me over these three recovery weeks as that meant that I was doing okay. She was also impressed to hear about the amount of activity I have been doing and told me not to get frustrated with myself. The words that really resonated were: "Karin, we're not giving you anything that is going to make me feel good" and I instantly remembered that even though I have my hair and I don't have the intense side effects of chemos of old, I am still on chemotherapy.

My blood counts were lower than I had expected. My white blood cell count is only 2.5 so I still have to be very careful to stay away from sick people. My hematocrit and hemoglobin are also low – hematocrit is only 29.6 (normal 34-46), which means that I'm still anemic and explains further why I've been so tired. There is still a massive battle happening inside my body and I can't expect to be feeling stellar. She's good at helping me to manage my expectations; at helping me be realistic but no less hopeful and expectant of what I can and will accomplish.

We talked about next steps. I have a PET Scan scheduled for two weeks from now: Feb 3. It will reveal if (that) the SGN-35 is working. Dr. M told me that it would be a surprise if the disease is completely gone after just these two rounds. Not that she was being negative, but she didn't want to get my hopes up. In the drug's studies, it has shown to take more like 4 cycles to eliminate Hodgkin's presence in patients. This test is just a test to make certain that there has been some reduction.

The infusion went well and the wait was much shorter than normal. My mom and I played Word Scramble on her iPhone while the drug dripped. My nurse was young, sweet, and very lackadaisical about SGN-35, which she was very familiar with. That helped to calm my nerves about having any reactions. And, as always, once it hit my veins and nothing happened, I could unclench my jaw. Forty-five minutes once all was said and done and we were through.

We packed up our things and were on our way off the floor when suddenly my breathing and chest were a little tight and I kept going into coughing fits anytime I tried to take a deep breath. I didn't want to go back into the infusion room but I also didn't want to leave the hospital in case something bad was happening to me. Despite my mom persisting that I go back in and tell the nurse, I was snippy and noncompliant and just wanted to get out of there. However, I wasn't stupid enough to leave the hospital.

So I found a chair in the lobby and sat. I breathed and people watched until the coughing ceased, which didn't happen until up popped another little organ into the tissue I was blowing into. After that passed through my inner tubing, things seemed to open back up. As far as normalizing my breathing, I was just short of needing a paper bag. But I knew in the back of my mind that I had gotten myself into a self-inflicted tizzy and that I could also get myself out. Nothing was wrong. I was just being paranoid that something could be.

After about 15 minutes of telling my poor mom to stop looking at me and asking if I was okay, it passed and we were finally in a cab to Grand Central and on the way home via a different train line to a different station because I could not wait the nearly two hours for the next train to Wassaic, NY, where we had left out of. I had some major ants in my pants and all I wanted was to GET HOME. Luckily my sister is flexible and picked us up in another part of the state – she could probably tell I was on the verge of a breakdown. I like to think that I'm pleasant to be around most of the time, but I don't know how they all put up with the brattiness that can kick in when I occasionally lose it.

Once the train lurched out of Grand Central and I sipped a little Dr. Pepper (odd how this non-soda drinker craved that) I felt better. Much of the ride was passed marveling at a big bellied man in an oh-too-worn white undershirt one cart up dancing in the vestibule like nothing I've ever seen. Killer moves. He was r-o-c-k-i-n-g out to whatever was pumping from his earbuds. I think he was singing as well, but we had the insulation of the cab doors between us to muffle that – probably a very good thing. That vestibule was his stage and he took full advantage of its space grapevining from one side to the other. He even incorporated the poles into his routine like a daytime stripper. It made me smile hard.

Now here I am back with Sammy and Craig and even more snow today. The sun is out and we had a beautiful, albeit tough walk in the additional six inches on top of the two feet we already have. I'm looking forward to seeing some good friends tonight but more immediately, to a much needed nap. I'm very exhausted, but very, very happy to have made it through yet another treatment.