Blur

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Some Houston Pix:

Houston 2

Matters of the Heart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fiesta Fiesta

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

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

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

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

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

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

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

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

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

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

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

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

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

Dodo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dave Matthews "Dodo" lyrics

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

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

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

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

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

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

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

A Stinky Situation

I was ushered from the large-scale holding pen where all patients wait for diagnostics testing into a smaller waiting room. It was just a nondescript middle age man and me. Neither of us had a phone nor reading material to bury our face in so we played The Awkward Game for several minutes: Eye contact? No eye contact? Conversation? Keep private? Focus on that hangnail? Even without speaking we could tell that the other was tired and drained from a long day of testing and both opted for silence.

That was until the scheduler came in with a stack of papers, each bearing a patients’ name. She started rattling off the names on the header of each as we both shook our heads indicating 'not me'. She quickly opted for the more effective method of just asking us our names. She turned to the man across from me first:

“What is your name?” She asked in a thick accent native to somewhere in the Middle East, I deduced.

“Stinky,” he said back in a deadpan voice.

I immediately burst out laughing; I may have even snorted. What a funny and unexpected joke to hear from this unassuming man with whom I’ve been darting glances from for the past 15 minutes. I caught his eyes and shot him a toothy smile as if to say: “Right on, man. Way to keep it funny in an otherwise crappy situation.”

He did not smile back and in fact looked both stoic and exacerbated. My heart sank but my doofy smile stayed on my face not knowing what else to do. It took a few seconds for my slow brain to process that no, he was not making a joke. My expression changed from chummy to incredibly apologetic.

He stood up as the scheduler shuffled her papers and brought his to the top.

“That’s me – George Stinky,” he again confirmed, pointing to his name in writing.

I was mortified and the blood rushed to my face in sheer horror of my bad sense of humor. He followed the scheduler out of the room completely avoiding acknowledgement of the curly headed girl that laughed in his face.

I wanted to run after him and tell him that I was sorry, that I thought it was a joke. It probably wouldn’t have made the situation any better though. Joke or no joke, his last name still stinks.

The First 12 Days

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Houston Highlights:

4-10 blog pix

Chemo by Mouth?

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

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

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

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

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

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

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

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