Wednesday, May 25, 2011

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.

Friday, May 20, 2011

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.

Wednesday, May 18, 2011

First (Re)Birthday

Today marks one year since my autologous stem cell transplant. It's incredible to think that a year has gone by and about how much has happened since May 18, 2010 – my Day Zero. This month also marked the two-year anniversary of my Hodgkin Lymphoma diagnosis: May 8, 2009.

I haven't been able to fully reflect on how much has been rebuilt, grown, and evolved since then as it's been an essentially continuous treatment ride since. But what I can reflect on and rejoice in is that I've survived and thrived and continue to live, and live fully, with this disease. I'm more appreciative and aware of everything and everyone around me and for that gift I am forever grateful.

However much overused, I think this is the perfect opportunity to post one of my favorite songs of all time. Who knew how much my pre-cancer affinity for Rent foreshadowed my real life and the themes that have arisen in it? I couldn't say it better myself, Mr. Larson.

Today - with my growing crown of ringlets, which I've come to adore (May 18, 2011):

Stem Cell Collection - 12 million stem cells harvested (March 2010):

Day Zero (May 18, 2010) receiving back my 6.5 million stem cells that would rebuild my immune system and allow my body to recover from the toxic chemo of the weeks before:

Autologous Stem Cell Transplant 10-day inpatient recovery (May 18-May 29, 2010):

The very beginning (recovering from my first lymph node biopsy, May 6, 2009):

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?

Thursday, May 12, 2011

Diamond, Inc.

To use a boxing reference, I've been on the ropes for the past couple of weeks. I've been taking jabs to the head and the body, weaving and keeping my hands up to protect my face. The important part to note is that my gloves are still up. My body hasn't hit the ring floor. I just hope to hell that the final bell is damn close to ringing, as I have been through enough rounds.

I’ve had blips of coming back swinging, of standing strong on my own two feet again, but unfortunately they quickly pass. Most of the time on this clinical trial has been spent panting on my stool in the corner, wet towel on my head and water being squirted into my mouth between rounds – my coaches shouting motivational clichĂ©s at me.

My second cycle of the trial drugs, Panobinostat and Everolimus, began on April 29, though that doesn’t really mean anything beyond written study protocol. I have been on the trial for 41 days total and my pills were held back for a total of 14 days due to my baby white blood cell (neutrophil) count being below 1,000 or because the side effects were just too much.

Since I’ve been home, I’ve received Neupogen shots twice, which has helped to bounce my counts back up within a day each time and gotten me back onto the drug calendar schedule. This has allowed me to be off the drugs for no more than four days at a time.

I’m proud to stay that my platelets and red blood cells, though low, have held on and I still have not had to receive any blood transfusions. Somehow my bone marrow is still working.

However, this clinical trial has not been a breeze by any means. Yes, I’ve escaped dreaded mouth sores and my hair isn’t falling out, but the fatigue is tremendous. I have a very small energy tank and a very low appetite. My weight is down by 10 pounds since I started the trial April 1. There are tender areas on my rib and hipbones, red dry skin spots, and back aches ­ – hence the boxing analogy. I’m pretty beat up.

But such is the world of cancer treatment. A big factor at play is how much past treatment I’ve received. Anyone’s body would still be recovering from an autologous stem cell transplant, but I’ve been doing that and remaining consistently on treatment regiments since. Hence, the refractory Hodgkin Lymphoma world. All I can do is adapt. Prime example: looking at a plate full of food makes me nauseous and intimidated, so instead, I dump the entire thing into the blender. This morning’s mix was a salad of spinach, strawberries, cantaloupe, and coconut water right to the brim of the blender. This way I can sip in all of the nutrients I need: far more than I’d ever be able to get down chewing and digesting.

Despite how frustrated I can get, I have been functioning remarkably well for what’s predicted, I think. There are patients that are off of this trial for up to three weeks without taking the drugs while their bodies recover, so I have the time if I need it. These are such early phase drugs for treatment against HL that everyone is learning as we go. I take my job seriously to report symptoms and to push back when I know I’m not feeling right or when I need to take a break. I am used to taking chemotherapy that has regimens like 1 dose, three weeks off, but this is every day. Three days a week it is two pills a day. That pace gets exhausting and a few times now my body, mind and emotions have given out.

But with those breaks, I’ve bounced back up. I have been off the pills since Monday. My WBCs are in the toilet, neutrophils at 0.2 as of yesterday. After a very difficult weekend side effect-wise, I declined the Neupogen shot on Monday knowing full well that my body was still recovering from the one it received on Thursday, nevermind both the drugs. After no signs of natural recovery, I took it in the arm yesterday and hope that my counts will be high enough today to get back on the pills.

I take the Panobinostat in addition to the daily Everolimus on Fridays, Sundays, and Tuesdays, so those days are particularly hard for me. Last Sunday night was something awful – insomnia, stomachache, back ache, racing heart. Now I know not to take my pills at 10pm. Bad idea. This is all about experimentation. That’s what a clinical trail is, right? What gets me through the tough moments is knowing that going through them will help other HL patients in the future. I am providing essential data to future cancer treatment development. That is a tremendous motivation and honor for me.

The most difficult part of all is the coordination that I have to do. I am now working with three institutions in three different states: Hartford Hospital, Memorial Sloan-Kettering, and MD Anderson. I need to keep them all in harmony, up-to-date, informed and be conscious of their time and my time. It is an absolute truth that being a cancer patient is a full-time job and lately my company has grown tremendously – with it have my CEO responsibilities.

It’s just like working with different clients. Every one has its own processes, protocols, care practices, opinions and egos. The key is for me to know how to approach each one to best accomplish what I am trying to do. But at the center of each institution is my care. I truly know that I have the best doctors and nurses wanting to do what is best for me at all times. I just wish I could get them all into one room for a weekly conference meeting to go over my case updates. But that won’t happen. I am now doing my damn best to conduct this medical orchestra through e-mails, phone calls, voicemail after voicemail, faxes, secretaries, documentation and butt covering. It takes an obscene amount of patience and persistence.

So much of the decision making for my care is in my hands, which is empowering and scary as hell. As much as my medical teams care about me, I am not their only patient and they cannot remember every detail about my case nor are they thinking about it constantly, as I am. I am the only one who sees the big picture, knows the key players, and therefore can manage all of the logistics of painting that picture. Nothing happens in a vacuum so I am constantly conscious of how each puzzle piece relates to another. As Craig says, I’m currently everybody’s patient and nobody’s patient. I have to look out for myself.

I am incredibly fortunate that my voice is heard and that I am a very respected as CEO of this team. Frankly, I don't think that anyone else wants the job. At this point in treatment I know what I need to reach whatever goal it is I’m trying to tackle and my team has been more than happy to oblige and let me take the reigns. As always, I know my body best, but most recently I’ve been less shy about stepping into the leadership role to ensure my safety and survival. Never trust a fax (or a fart). And never assume, it makes an ass out of you and me.

That is not to say that I always do this with grace nor that the stress, frustration and anxiety does not become overwhelming. I have lost my shit more than once, but never to the medical teams … as much restrain as it has taken at times, that is not how I roll. “Kill them with kindness” is still my motto – extra kindness to the secretaries as they hold the power. It’s my poor inner circle that takes the emotional release. If I did not have my family, friends and my husband to pull me out of my funks and get me back on my conductor’s podium, this orchestra would have long ago tooted its last horn.

I have been extremely busy running my own business and staying on my feet in the ring. Though on my off time, I have had some wonderful moments and have been much more at peace in enjoying simple things. I’ve rejoiced at visits from beautiful friends. I’ve had some glorious naps. I’m back with Sammy The Dog for walks, cuddling and resting on the lawn in the sun together. I got to hold my newborn niece. We enjoyed a special mother’s day with my and Craig’s mom and grandmas. I’m back into a regular yoga practice. The Connecticut weather is something out of a child’s drawing: perfect temperatures, a blue, blue sunny sky, and everything in glorious bloom. Soon, I will be too.

Next on my docket is to complete all of my pre-allo transplant testing for the fourth time. I head to Hartford for a Pulmonary Function Test today in addition to my bloodwork. One result gets faxed to New York. The other result gets faxed to Texas. Ill be there somewhere in the middle getting a needle in the arm then filling and emptying my lungs into a tube with all my might. I have to pass the test.

I’m currently double booked for a PET Scan in NYC next Thursday and one in Houston, Texas, next Monday to check the drug’s progress and see if all systems are go for transplant. Currently I’m trying to smooth out that wrinkle … everyone wants me in their machine for their own – very legitimate – reasons. I’m working each angle, considering all the factors, and making my case (aka brownnosing) both oncologists. Welcome to Diamond, Inc., where customer service shines. [insert cheesy logo featuring a winking cartoon man]