Working My Way Out

photo courtesy

Salvage treatment has started. I had my first infusion of Gemcitabine (Gemzar) chemotherapy this past Friday. It is not a drug that is new to me: I once received it as part of the regimen GND, one of the first regimens we tried to get me into remission after I relapsed from my autologous stem cell transplant in 2010. Now, we’re hoping it’s the lone ranger that will be my “get out of jail free card,” as Dr. O puts it. I don’t think it’s going to be a “free” ride by any means, but more of a “guaranteed” ride, as it’s well proven to work against HL. The side effects are supposedly small compared to other chemos, but chemo is chemo and it still makes me feel like shit. And for me, after being through so much of it, unfortunately, I’m more sensitive to those side effects.

This plan hatched after a long conversation at Columbia with Dr. O, my mom, and myself after he and his team had poured over my treatment history and attempted to find creative ways to get me out of this current situation.

A positive takeaway was that Dr. O said the amount of disease I have in my body is really unremarkable. He says that normally looking at my PET Scan and CT Scan results, doctors would give a shrug and give a “eh.” Unlike other patients, I am not contending with a 9cm mass pressing in my chest. For this I am grateful. What I am contending with is disease that – though scattered and therefore not causing any immediate danger ­– is in annoying places that causes it to be symptomatic. Annoying places like my bones and along my vertebrae, which leave me with pain syndromes. Because of this, we must treat a little harder so as to not allow those places to get worse.

We are dose escalating this drug, not using the normal protocol, but a special “Karin protocol” because we know how compromised my bone marrow is from all the treatment I’ve received – most especially my two stem cell transplants. With each treatment it gets harder for my body to muster the strength to create new cells after the chemo wipes them out. My body is tired. Therefore, we’ll watch my blood counts closely, as Gemzar can especially take a hit on my platelets. If things look good, we may add in another drug to the mix. I’ll be riding out this plan for a few months and we’ll depend on my symptoms to reveal improvement and will put off imaging until necessary. Another thing to remember: all of these PET and CT Scans expose me to more radiation, which means more cancer risk.

We had a lot of laughs with the doc and his amazing nurses. Dr. O and I hugged it out solidly. I know he wants the best for me and that I’m in good hands. I love the connections that I have with the team through e-mail and how I never feel like I’m floating out on my own. Though we have these really serious conversations, we can follow them up talking about our favorite candies and how my hot flashes were causing me to strip on the train and how the Decadron he gave me would have me pushing the damn train back home. It feels good to feel like you’re in a human environment.

Fortunately, I am able to receive the chemo locally at Hartford Hospital so as to avoid weekly trips to the city. I feel even more at home here, having been treated at the Helen & Harry Gray Cancer Center on and off for almost four years now. Secretaries, lab techs, nurses and doctors aren’t just my medical team, but truly friends. Not much changes there which is comforting, but also sickening as it brings back a lot of tough memories. I do my best to focus on the sweet moments and not break down at the saddened faces of those around me in the other chemo La-Z-Boys. This chemo drips over only a half-hour, making it about a 90-minute trip with pre- and post-meds, port insertion and removal and rigamarol. Not too bad. Then it’s just a 20-minute vs. 3-hour ride home to my couch where I can sleep it off. So far Dr. D and Dr. O are working together seamlessly and I’ll take the trek into the city once a month to check in and get checked out.

Though the infusion process was just another infusion process, it’s been a chemoey few days. I wanted to see no one over the weekend, and I was in quite an emotional downturn. The fatigue was – and still is – pretty tremendous. If I put my head down, I am asleep. My body also has that familiar swollen feeling both from the chemo drugs and the extra super Decadron steroids I get with the infusion. We are again trying to get me off of steroids of any kind since we can now rely on the chemo to hopefully be holding back the cancer. My eyes are bulged and my muscles and lungs even feel very tight. I went on a walk around my neighborhood yesterday and it was very hard: hard to breathe and even hard on my muscles.

Gotta have goals. I will be strong again.  photo courtesy

I’m realizing that I am very out of shape as I’ve had to “lay low” so much after the pneumonia debacle, long hospitalization, pain syndromes then biopsy procedure. Finally this week, I get the go-ahead to start using my arm again and my plan is to ramp things up again – gently, but consistently. I have this incredible urge to get strong again. I hate the feelings of weakness and lethargy and I don’t want to bow down to the chemo. Today was a much easier walk with Craig and Sam and this week I’m going to take my first dive into water aerobics – gentle, supportive, non-impact and a certain way to make some senior citizen friends at the Y.

Soon – hopefully only a few months of this ­– and fingers crossed, we’ll be able to decide the next step as this is not a sustainable treatment. I already got all choked up in the doctor’s office anticipating what that next step will be. It will be a massive life decision, as if I have not made enough of those already.

If/when the Gemzar does what it is expected to do, I will ideally be left in a state that is real close to remission. Now, what to do with that remission will be the big question. I’ll immediately jump to a clinical trial with the hopes of it holding that remission in place as much as possible. Then I have to decide: stick with the clinical trial route and hope that science keeps moving fast enough that I can jump from one to the next for the rest of my life – keeping things in a potential state of constant flux. Or, strike while the iron is hot and take advantage of the only short remission I may ever get and attempt a second allogeneic stem cell transplant, this time with a matched, unrelated donor.

This second option scares the shit out of me, but it is an option, probably the only option besides some miracle or huge scientific advance that could guarantee me the highly coveted long-term, cancer-free remission (after a long recovery process and most certain bouts with risky graft vs. host disease along the way.)

No matter what, I do want to know if this option is even a viable option for me. I like to pour over options. Could my body handle it? Is it advisable? Is there even an unrelated donor out there on the Be the Match registry that is a close enough match to me?

Time is of the essence, as I learned with my first transplant. If I do reach remission from the Gemzar, I need to be able to jump immediately when that happens. Therefore, we need to start tapping resources now. I’m being connected with transplant doctors at City of Hope in Los Angeles and with Fred Hutchinson Cancer Center in Seattle: the two leading transplant centers in the nation with regard to second transplants/haplo transplants/mis-matched transplants – all the fancy stuff I’d be getting into. It’ll be good to find a team and a pseudo-plan now so we’re not scrambling. The Columbia transplant doctor will also begin searching the marrow registry for a match for me, and I’ll be in touch with my Sloan team as well.

Deep breath. As much as I want to say that is all months away and I don’t need to worry about it, I do need to lay a foundation and that takes time, fortitude, and along with that comes, confusion and anxiety. At the same time, I need to focus on getting myself through this immediate step, incorporating the weekly infusions into my life, getting my strength back and highly refocusing on my healthcare plan. I need to do whatever I can do to complement/combat what this chemo is doing in my body so that I’m ready for the next step.

And not just the treatment steps. I’m also gearing up for another beautiful summer of paddle boarding and kayaking, weekend beach travels, more writing opportunities and volunteering. More living my life out loud rather than on the couch. The end of winter was rough in many ways and I’m ready to break out. Right now I’m sick of recovering from this chemo and it’s only been three days. I need to get over that, take a gut check and be grateful I even have this option. I need to be gentle with myself and also kick my own ass. Easy f’in peasy, right?

Close Call

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With swift stealth and confidence Brenna cleared a path.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blur

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Some Houston Pix:

Houston 2

Matters of the Heart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chutes and Ladders

Bendamustine has given me quite a ride over the past three weeks. Despite being just a one-drug cocktail, it packs a punch. Kind of like the effects of drinking jungle juice made with vodka vs. grain alcohol. The latter is never a good idea. But unfortunately, I don't have a choice in this matter. If I did, I would choose straight up Hi-C.

Week 1: lukewarm hell – the debilitating fatigue, head fogginess, acid reflux, indigestion, constipation, and overwhelming malaise left me to do nothing but float around the house like a groaning blob.

Week 2: better, much better. I started to get out and about again and the gloomy skies started to clear. All systems were once again a go. Lots of hikes. Lots of lunch dates and outings. Miss cocky pants probably pushed herself too much with all the renewed energy I had.

Week 3: down again. It was expected that my blood counts/immunity would drop around this time, but the weekly CBC checks never revealed a plummet. No transfusions were needed. I guess this means my bone marrow still has steady cell building power. Maybe it was my marrow in overdrive that sent me into a bad place this week. I felt the familiar swelling in my chest. It is like having an elephant inside of my chest – not one sitting on it like I'm about to have a heart attack, rather one becoming painfully large within it. I could tell that the elephant was not happy in this constrained space.

It was tough to take deep breaths, I'd often get dizzy, and a deep cough crept in, especially when I laid down. My heart was also pumping extra hard. I could feel it push the blood through my ears loudly anytime I tried to lay down and rest. A lymph node on my left collarbone waxed and waned in size, especially if I pushed myself too much. This scared me because the feelings were all too familiar. They are the same ones I've felt every time a recurrence of the cancer has crept in ... and the trend has been for this to happen near the one month mark.

I had daily talks with my nurse practitioner (aka "bestie") at Sloan and laid very low. I diligently took my temperature and did a lot of yoga and visualizations of a chest cavity filled only with bright, white light, not damaged DNA replicating all over itself. This fear of recurrence led to a lot of anxiety, leading to chest tightness on top of the fullness, making it hard to distinguish what was going on.

I had a couple of rough mental and emotional days and a lot of nightmares. One night I was a complete wreck and tried to explain to Craig that I just wanted to take a pumpkin carving scraper to my insides. I wanted to go in and just scrape out everything growing inside of me until I was left with a heap of stringy, orange slop. He gave me a warm washcloth, instructing me to wash my face with it and stayed with me until the screaming sobs ceased.

Week 4: I'm entering this final recovery week feeling comme ci, comme ça. Neutral? The big positive is that the chest fullness is gone. The prominent lymph nodes on my collarbone and up and down my neck have at least stabilized. The cough is gone and my breathing is much improved. I'm looking forward to telling my nurse, Brynn, that things have improved. Oddly, it was after a night outside in the frigid wind at a UConn football game tailgate that I felt remarkably better. Maybe a prolonged shot of fresh air, a glittery pumpkin sticker for my cheek, and a cup of hot, hard cider is an ancient remedy of some kind – put that in the clinical trial notes. Maybe what I was feeling was a strange bug, or allergies, or paranoia. One of the struggles of being a cancer patient is to remember that I am also still a human and to not always jump to the conclusion that everything is related to cancer activity. A little post nasal drip shouldn't cause me to start making funeral arrangements.

It's been a game of Chutes and Ladders. I feel like I've climbed a few ladders and made some progress, but unfortunately the chutes have been fast and windy. This Thursday my little plastic playing piece with the pigtails, plaid skirt, and knee socks will be back at the "Start" space to begin the adventure all over again with Bendamustine round 2. At least this time I'm prepared for how high up and how low down the side effect game may take me.

Cumulative Effects

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

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

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

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

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

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

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

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

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

ICE Round 1, Day 3, 4 & Aftermath

Obviously I have slacked on the daily updates. Getting the strength to write was near impossible. In short, I've been feeling awful. After day one, there was no more dancing with the IV pole. After the second day of meds things certainly got to be woozy, cloudy and anxiety provoking. By Friday after Dr. Dailey stopped by to tell me I could be discharged I was showered, packed up, shoes on and unhooked from the port waiting eagerly in a hospital chair when my mom and sister arrived to take me home. Since I've been home, I've been spending most of my time trying not to vomit or mustering the strength to get off the couch.

I handled the Carboplatin okay when it was added on the third day bringing the total hours of receiving drugs to five. However, each night when the meds finished dripping, I got very nauseous despite all the nausea blockers I would take hours before. Luckily, the "as needed" anti-nausea meds seemed to cut it, though on the last night I woke up needing it twice. I wasn't feeling hot at all Friday morning, but I wanted to go home so, so badly that I sucked it up as hard as I could. Dr. Dailey came by and I told him that I was doing okay and that I was definitely ready to go home. He agreed and provided me with some at-home scripts for nausea blockers and Atavan. I felt as if my head was disconnected and that my eyes and appendages were buldging from all the fluid I'd been in-taking and all the hot, stale air. I hung my head out my mom's car's passenger window like a dog on the way home and she even opened the sunroof for me though it was snowing right into the car.

But it wasn't all bad. I just feel so badly right now that it's hard to remember anything else, but I'm trying to focus on the positive as unfortunately I've got to do it all again ... twice. I had great surprises from some more visitors. Nicole came by to have lunch with me. Melissa, Leah and Kyle came Thursday evening, while my chemo was dripping, with treats and smoothies, then my brother-in-law, Eric, showed up to add to the laughs and Craig stayed until I was ready for sleep. We got quite rowdy as they played props with the ridiculously small TV monitor on an arm that served as the entertainment in my room. More co-workers stopped by with gorgeous flowers, sweet notes, and my fav Starbucks treat.

All the nurses were truly, truly amazing. I had great care the whole way through and never felt alone or neglected. They even rolled around with a "high tea" cart on Thursday while Craig and I were relaxing. A nurse in a crazy purple and red hat came in with a vast array of fresh pastries and donuts, coffee and tea to choose from. Fantastic! I enjoyed a 45-minute massage which felt fantastic on my achey legs especially, and even received a Reiki session the morning of my discharge. I was so taken away to a peaceful place that I didn't even hear my boss come into the room with a latte for me - very stealth. I also took a wellness workout class with two other cancer patients - one just 18 years old who had been in the hospital for a month, and a 60ish year old woman who was neutropenic and had to wear a mask to protect herself. I, on the other hand, managed to snap the exercise band they provided us while doing a set of tricep curls. It was humbling and made me realize how good I still have it, and how I do not want to lose my strength and how hard I'll have to work to keep it.

Now I am home and as I said, my time has literally been spent trying not to vomit. Friday I felt real woozy, but my symptoms were controllable for most of the day. My mom and sister cleaned my whole house while I slept and watched bad TV. Then Craig got home and my Dad arrived and we all just relaxed and watched the Olympics and I watched them play Wii Fit trying to do their own ski jump and slalom races, Craig bouncing up and down on the Wii board dodging wrecking balls in the obstacle course. I kept asking them to do funny things to keep my mind off the pain. Those included my mom doing mock Olympic sports around the house with a "Fuck Cancer" beanie on her head. This was funny. I'd call out "speed skating," "short program," "skeleton," or "bobsled" and she'd pantomime. Oddly, they all looked alike. It was hilarious.

But then suddenly the laughing turned into awful, awful stomach pains and I got very serious and snippy. I hadn't had a bowel movement since I was admitted to the hospital and the nausea blockers tend to block the action down there too. So, it was debilitating s-pains to the point where I was asking someone, anyone, to just stab me in the stomach to alleviate the pain. I sipped on hot chamomile tea, did the exercises that my mom said she would do with her c-section patients that were clogged up, but nothing (still) has seemed to work. With awful pains and vomit hovering right at my throat sphincter I was able to get up to bed, take an Atavan and fall asleep.

Yesterday I woke up with less stomach pain though the nausea was still there. Craig had to drive me back to Hartford Hospital to get a Neulasta shot at 7 a.m. This is the equivalent to 10 of the Neupogen shots that I used to get during the ABVD. It will serve to stimulate my bone marrow and get my counts back to reasonable levels. The nurse practitioner explained that I'll have a lot of bone pain in my hips, shoulders, chest, and gave my a prescription for vicodin. I'm starting to feel it this morning and may in fact go get that script filled. The rest of the day yesterday I was uneasy but stable. I got enough strength to take a walk with Sam and Craig down at the park, which was hard, but felt great. Dr. Dailey told me to alternate rest periods with activity periods so I'm doing my best, even if it's just a few minutes on the treadmill. Much of the day was spent cuddling with Sammy and watching trashy tv like "16 and Pregnant," "America's Next Top Model" and "Real World DC." I ached to be able to sleep, but the stimulating effects of the steroids matched with the uncomfortable stomach feelings prevented that so I watched "Billy Elliot," started a puzzle and picked at whatever food I could take - forcing down nutrients.

Then nighttime came and it was almost time to be able to take an Atavan which helps with nausea and anxiety. I got up off the couch to let Sammy out while Craig slept a few cushions over. I shut the front door, turned back around, burped, and that was the end. There was no stopping it. I woke Craig up to wrenching vomiting. I made it to our nice, wood-woven garbage basket in the living room - not ideal - but better than the floor, I suppose. Craig ran to get a replacement and I shifted my barf aim into a cardboard box as he hovered over me. It kept coming and it sounded and smelt inhuman as I wretched animal-like. I despise, despise, despise throwing up and can't remember the last time I did it. Tears streamed down my face and I was sweaty and achey in my already raw intestines. I had been so proud that I never threw up from the ABVD. I guess high-dose chemotherapy is no joke. Once I brushed my teeth and showered I admit that I did feel better. For the first time in four days I wasn't nauseous, but I worry that this will continue, and I know how important it is to keep nutrients down.

This morning? So far so good. More achey and weak than nauseous so hopefully that's a good sign. My little brother made the trip from Roger Williams so I am looking forward to seeing him today and hope to again be able to make it out of the house for some fresh air and a walk. Other than than, just taking things literally hour by hour.