Bendamustine Cycle 2

It was last Monday at 6:30pm that the (212) area code came through on my phone. New York. Craig and I were cozied on the couch already beginning evening news watching routine. I conceded to the fact that I wouldn’t be getting Bendamustine treatment the next morning at 8am as scheduled. That day my local bloodwork check revealed a platelet count of 65. It had risen only 8 over the last five days. How could they expect it to jump to the required 75 in just a day?

I was wrong. My nurse, Brynn, called and said that the team still wanted me to come to the Sloan clinic the following morning. She said that I would think she was crazy, but that she was passing on the word exactly from Dr. Moskowitz’s mouth.

“We got your bloodwork today and see that it’s still low, but we’re going to try something,” she said. “I’m being for real. Right before you get your finger pricked we want you to jump up and down for 15 seconds.”

I told her that yes, that was random, but that I’d do it for sure; that’d I’d do handstands, cartwheels, jumping jacks, whatever it took to be able to get the treatment that I needed. She explained that some of the oncologists had discovered that getting the heart rate up immediately before the blood is drawn can have an endorphin effect which can spike the platelet results. The act can shake things up and force the cells to multiply – if only temporarily. It had worked for another woman on my study and we were hopeful that it would for me to.

So, we grabbed our now nearly permanently packed bags and were on the 7:57pm train to New York City. We didn’t want to deal with a 4am wakeup the next day and luckily had not yet canceled our Miracle House reservation.

Tuesday morning I pulled on my jumping boots and we made the trek across Manhattan. While waiting for my name to be called, Craig pulled me into a side hallway. Little did I know, he had queued up the Rocky theme and was very serious in his coaching role. “Gonna Fly Now” played through his iPhone and he encouraged me to start bouncing. I did a combination of awkward jumping jacks and aerobic steps all the while knowing patients, doctors, nurses could turn the corner at any moment to find the Richard Simmons worthy scene we were creating. He had me going until I broke a sweat and had to strip down to a t-shirt. I was pumped.

Then we heard my name. I explained to the lab tech that I needed to do a few more jumping jacks while she laid out the needle, gauze and Band-Aid.

“Oh sure; whatever it takes,” she exclaimed excitedly and began to dance and laugh right along with me.

I upped the 15 second recommendation to 1:30 seconds watching the red second hand tick as I flayed about then plopped into the chair for the finger prick. The tech was ready with the needle and vile.

Craig and I waited anxiously under the blinding white lights of the doctor’s exam room.

The door opened slowly and in popped a red faced and beaming Dr. Moskowitz who proclaimed: “Happy Thansgiving! You’re getting treatment!"

We all cheered like goofballs as she read the lab results with the platelet count of 78. Brynn poked in to give a yelp as well. Dr. Moskowitz then revealed to me that had it taken one more day for my platelets to reach 75 I would have had to been pulled off the study. I don’t even want to think about what that would have meant as this is the drug that I need. There are very, very few – if any – other tricks in the bag. I am glad that I didn’t know this tidbit beforehand. That was a very wise omission of info on her part as I had been uneasy enough about being off treatment for seven weeks.

It was so odd to want something so desperately that I knew would leave me hurting so badly. It was a massive relief for all of us. Besides that nagging desire to live, scientifically, the team at Sloan of course wants me on the study so that they can watch me meet success, so that they can prove that this course of treatment works and so that they can help other patients in the future. It’s strange to think of myself in these terms and of course these are not terms ever spoken by my medical team, but I am a rare scientific specimen. I am in a clinical trial for a reason. They need my data. They need to study me. I need to live and I am putting my life in the hands of this medical science. I am more than willing to do whatever it takes and hope that everything that I am going through will make it that much easier for the next person.

The chemo infusion itself went without a hitch. Dr. Moskowitz ordered a slightly reduced dosage, which the study allows for in the second round. The Benadryl they require made me groggy and woozy but the 40 minutes went quickly.

Riding the usual steroid induced high, Craig and I did some exploring in the city’s design district. We spent hours perusing through the visual wonderland that is ABC Carpet and Home taking in floor after floor of creative, artistic interior décor. Every single thing in that place is a conversation piece in and of itself. Then we snacked on rock hard NYC pretzels from a cart and stumbled upon a huge open-air holiday market in Union Square. Under every tent was a different artisan with something mind bending, intriguing and unique to explore.

Suddenly the steroids wore off and the Bendamustine in. My legs started to swell and give out and my head became very heavy. It was time for my prince to escort me “home.” Both chilled and flushed from the long day I burrowed into the bed covers in our Miracle House room to indulge in a much needed before-dinner nap.

We then gathered with a group of nearly 20 other patients and caregivers staying at MH that evening for our biggest group dinner yet. We all ducked out from the cold November air and into the reserved tables at Pom Pom diner. We shared a booth with a fascinating woman from Nebraska who is a calligrapher, an educator and an arts and books lover among many things. We had very much in common, and it was comforting to hear about what she’s learned and experienced through taking care of her ailing father – a retired English professor. There were many others there too. Some knew already that they would remain in the city through the holiday. Others were packing up to make the trek home to their families with plans to come back for their next treatments, procedures, and adventures.

On top of the post-chemo symptoms, a cold had set in and my nose was continually running just as much as I was sneezing. Sleep was hard to come by and my nose had become raw from the continual tissue rubbing. But it was up and at ‘em early again on Thanksgiving Eve for infusion number two. My ever- patient husband waited away the hours with me as my chemo was mixed until I was finally “served.”

The train ride home was packed wall to wall with people, baby strollers, suitcases, and shopping bags. Every seat was taken and even the vestibules were full all the way along the New Haven line. We were fortunate to have gotten to Grand Central early enough to get a seat of our own. It was a beautiful thing to watch the human dynamics. Despite how cramped it was, I witnessed so many people helping to hoist others’ bags on the racks above their heads, giving up seats for the elderly, helping women with strollers to navigate between the cars. It made me smile between sneezes and chemo flush waves to think about who and where they were traveling to and what it would be like when they got there. Would their Thanksgiving table be a Turdukin or a Tofurkey table? How long had it been since they’d seen their families last? Were they looking forward to or dreading the reunions?

Despite how awful I felt and how desperately I wanted to be curled with Sammy on my couch, my chest was filled with a palpable fullness of contentment and astounding gratefulness to have my husband’s shoulder to sleep on and so many more loved ones to look forward to sharing the holiday with.

Supercalafragalisticexpialadoshus

It is something to say when you just don't know what to say, states Mary Poppins. So I am saying: "Supercalafragalisticexpialadoshus." It at once satisfies the craving for an expletive and for utter nonsense. The situation I'm going through is nonsensical. There are no answers and there are no words, so I'm saying this one loud and don't care if I sound precocious.

Turns out that my mom and I enjoyed another mini vaca rather than a treatment ordeal in New York City. This time: a 45-minute drive to my parent's house; a 40-minute drive to the train station; a two hour-15 minute train ride; a 20-minute taxi ride to drop our suitcases at Miracle House and a 35-minute taxi ride across Manhattan to Sloan-Kettering for my appointment – all the while hopeful that my doctor's visit would be followed by chemo treatment.

However, the timing just still wasn't right. A finger prick blood work report revealed that my platelets still hadn't risen high enough to be able to receive another chemo dose. The number needs to be at 75,000. I was at 56,000. My oncologist kept expressing how badly she felt that I made the trek all the way in, but that she had been optimistic even after receiving the blood work report I had gotten locally the day before. I was at a count of 50,000 then, so at least I am on the upswing. She had wanted to see me anyway and I had wanted to see her as well. It was good to check in and talk some things out even though there was no chemo to be had.

The plan is to try again next week. This will now be week 7 of recovery. I'll have my blood work checked locally on Monday and if my bone marrow has done its job over the weekend, I am scheduled for chemo in New York on Tuesday and Wednesday. If my counts haven't hit the mark by Monday, we'll check again Tuesday and aim for chemo Wednesday and Friday. Sloan-Kettering doesn't administer chemo on just two days a year: Thanksgiving and Christmas, so they'll have to get an exception approved for me to go off of study protocol and have a day between treatments if the latter chemo plan is the case. I don't yet know what this will mean for turkey day with our families.

In talking with Dr. Moskowitz, it turns out that I am not alone in this conundrum, that several people on the clinical trial are experiencing the same challenge of slow platelet recoveries. In fact, she said that if they could rewrite the study with a smaller dose of Bendamustine with the data that they now have, they would. All of the 29 people on this study with me have been through many, many therapies, most also had failed autologous transplants so all of us have pretty wary bone marrow. With this said, the plan is to get a reduced dose for the next infusions ... hopefully this will lessen the recovery time at least a bit.

We left Sloan and decided rather than heading back to CT, we'd make the most of our time in the city and spend the night anyway. We did lots of people and bright lights watching in Times Square as we waited in the TKTS discount ticket line and came out with tickets to Mary Poppins on Broadway. After a nap back at Miracle House and a dinner of decadent savory crepes at a French cafe, we settled into the New Amsterdam Theatre for the production.

Mary Poppins was the absolute perfect choice – a total escape into colors, special effects, dance numbers, and fantastical, whimsical wonderfulness. Call me cheesy but I love that over-the-top showmanship only Disney can produce. We were both so in awe of all of the surprises and the amazing imagination behind the show. Rather than thinking about how the cancer has yet another week to grow before getting a chemo whack, instead, I was able to whilst about jumping into a painting and dancing with statues, about tap dancing chimney sweeps that serve as lucky guardian angels, and about the premise that "anything can happen if you let it." I lost my own worries in the music.

After a brisk walk consisting of lots of humming, we slept hard. We joined a group of others from Miracle House for breakfast, one of which was a man in his late fifties facing the premise of a bone marrow transplant to treat his leukemia. His match is his twin brother in India who just suffered a massive heart attack. We spoke a lot about the transplants I've had and what got me through. He was so grateful and told me that he was so scared before, but that now he had hope after seeing me and how well I looked and how upbeat I was. I told him that attitude is everything and that he will get through it, too ... even the bad days. I was only paying forward what others have done for me by sharing their stories. Those Miracle House breakfasts are about so much more than pancakes and eggs. I look forward to seeing him again this week.

We decided on a later train to give us time to geekily wave behind the set of the Today Show, see the big tree being set up in Rockefeller Center, get suckered by the vendors along the touristy streets, marvel at the beauty of St. Patrick's Cathedral and wander from one beckoning retail window scene to another all the way down Fifth Ave to Grand Central.

Cheeks rosied from the November air and calves weary from all the walking, the train ride home was spent nodding in and out of slumber. The track rumbles lulled us to sleep ... a sleep interrupted intermittently by the garbled, incoherent sound of the conductor's voice over the speakers.

Hesitantly Ready

Dare I say it? Tomorrow morning I am scheduled, yet again, to get this long awaited second round of Bendamustine chemotherapy. I am now six weeks past the first treatment ... off treatment two weeks longer than expected. I think it's time to induce me.

In all seriousness, I will go to get my blood count levels checked locally later this afternoon to verify that my platelets have climbed high enough. Last week that was not the case, so I've been working on platelet building all week long. I'm not really sure what that consists of, but it's required a lot of rest, plenty of good food and an incredible amount of patience (not always easy to come by). Let's hope it worked.

If so, it's by train we go back into NYC. This time with my mom as my companion. Two ladies conquering the big city. With the help of the steroids to balance out my Thursday and Friday treatments, we're hoping for a couple days of museums, art attractions, shopping and a Broadway show. But we're flexible enough to know that the next couple of days may consist of watching movies in bed back at Miracle House. My post-treatment capabilities are always variable so we'll determine our day's activities as my body dictates ... no expectations. It's without plans and expectations that room is left for the most memorable of happenings to emerge.

To again quote the poet Lady Lee:

"I'm taking down the shelf of expectations

Crowded by imitations

I learned that now I can.

I'm letting go little by little,

But I am. "

Sometimes the Rug Comes Out From Under

Everything that I had worked my whole life for had come together. Young, spirited, excited, carefree – taking on the world. My world. At 26 years old, things had fallen into place. I had a beautiful home, married my high school sweetheart, adopted a crazy loveable dog, and was thriving in my career. I think a lot about what happened. What signs did I miss? What could I have done differently? I try so hard not to think about these questions ... and the worst offender, the "why" because I know there is no answer.

The definition of insanity is banging your head against a wall over and over expecting a different result. No matter how much I bang it I'll never know why this happened to me, what I did to deserve this, and why it happened now, in my prime, with so much going for me. Before I worried about whether the work day was deserving of a "power suit" and looked forward to coming home on Fridays and having a beer and playing corn hole in our front yard to "de-stress" from the week. Now I worry every day about what will happen next and if this disease is going to kill me. I had no idea what stress was before this.

I am so young. It hurts so deeply to think about what a sharp twist of fate I've endured. I literally had the world at my fingertips. Now at 28 years old I'm still grappling with this giant and it is only growing bigger and I am only losing more control.

I am not naiive to the fact that I have been very fortunate in my life, but things didn't come on a silver platter and that is why I am so appreciate it all so much. I built this life and formed amazing relationships with the people who have helped me to get here. To think of this foundation being pulled out from under me and for all of this to end is too much to bear at times. I've written these words before but it scares me more than anything to think that my life was so beautiful and perfect that it wasn't met to last ... that what some people seek their whole lives to find was given to me in my first era and I've used it all up.

For my entire life I have been a hard worker. I took homework seriously from grade school through high school and was always very hard on myself - pushing and pushing to do my best. I studied very hard in college and am incredibly proud of my degree. I rejoiced at the opportunities I had in the three career jobs I've held since school and worked second jobs waitressing tables and carving meat to be able to save and make ends meet. Now it pains me greatly to lose ground, miss opportunities, to say that I am home collecting disability payments. It makes me sicker than the cancer does.

Craig and I endured a long-distance relationship for five years – across states, across the world holding together visit by visit. Finally, we could be together every day. We married and bought this beautiful three-bedroom house with the intention of filling it. Now those extra bedrooms sit vacant with the doors closed so as to not waste the heat. My fertility will no doubt be gone after this next intense procedure if it is not already. My thoughts are often with the three embryos cryopreserved and waiting for when my body can hold them. I worry that my body will never be a safe place for them to grow in.

Don't get me wrong. There are many wonderful things have come out of this experience and my life is by no means a pity fest. It's rich and full.

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

At that very moment, while keying those above words on Tuesday afternoon, an unexpected car pulled into my driveway and I put down my laptop. It was my mom and sister. If I thought I was having an emotional day earlier, their arrival really opened the water works to free flow. I tried to compose myself but realized it was a lost cause when I caught a glimpse of my smeared, red blotchy face in the mirror. It's very, very rare that my family sees me cry as I don't like to upset them by being upset, but there was no hiding it.

I opened the door and said out loud:

"What are you psychic? I'm having a bad day." and just started bawling crying.

My mom hugged me for a solid while, then my sister, as I shook in each of their arms.

"Oh no ... little Karin," says my sister as she squeezed me until it almost hurt.

"We decided to come over and plant some tulip bulbs so that you can have something beautiful to look at while you heal this spring," said my mom.

After a couple more teary chokes they were outside digging 44 holes in the soil along the back of our house and I was inside making them grilled cheese and tomato soup. We didn't have to dwell and discuss it too much. They knew why I was crying and upset. I was frustrated and scared and tired, tired, tired of everything ... the same things they are feeling.

This is why I survive. This is why I have made it this far in essentially one piece with my wits about me and my perspective still on the sunny side. Without fail, as soon as I'm about to give up, a much-needed voicemail is left, a funny card arrives, a stranger in Times Square gives us free tickets, Craig comes home with a surprise dinner cooked by a coworker, or my family shows up with tulip bulbs. Knowing how much people care about me gives me that strength to fight harder. Sometimes knowing how much I care about myself just isn't enough. Knowing that I have a place in the world, that without me, there would be a void, is quite a motivating reality.

My family is not a serious bunch and we're all a little crude and unique. My mom is not the kind to coddle and coo over me. She'll let me be sad for a bit then usually say something like: "Alright Choppy, let's go. You're fine." There are no long, deep discussions and 'woe is us' complaints. For this I am so grateful. Mooshy, mushy is not my style. I hate for people to fuss over me like I'm an invalid. Soon enough we were eating and chatting then popped in the Christopher Guest movie Waiting for Guffman. My mom snored through it but my sister and I laughed out loud. The whole out-of-control emotional raucous of the morning was all but forgotten except for how greatly tired it left me, but this time it was a good, warm worn-out tired, one that meant that I had gotten it all out. And that takes work.

Rejected

I should be recovering from Bendamustine cycle 2 right now, but I am not. Apparently, I am still recovering from Bendmustine cycle 1, but did not find this out until Craig and I traveled all the way into New York City expecting me to get treatment.

After an hour drive south, we stayed with Craig's aunt in Trumbull Wednesday night who then graciously escorted us to the Metro North train station to get us into the city the next morning. We took an early 90-minute train in so that we could make it from Grand Central to Miracle House to drop our suitcase and get back across Manhattan to Sloan-Kettering to make a 9:45 a.m. appointment with the oncologist. Needless to say all of the packing, schlepping, car ride, train ride and taxi rides was exhausting.

I had my finger pricked for a CBC (complete blood count) check per usual then was ushered in to meet with Dr. Craig Moskowitz, as opposed to my usual doc, Alison Moskowitz (no relation) who was rounding last week. His fellow came in and checked me over and I recapped the myriad
symptoms I'd experienced over the three-week recovery period. Then the doctor came in and we did the same. He was obviously wicked smart and incredibly breezy about everything. He didn't feed into the need that Craig and I have to try to control everything about my care: Will we
do another round even though I have chest swelling? Will the transplant team be ready as soon as I have a clear scan? What about trying another drug with a shorter recovery period?

I think he got quite a kick out of us, this young question-firing couple. The doctor looked me straight in the eye, took a deep breath, smiled and said: "You know your body best. Don't worry. We know what we're doing and we're not going to let anything happen to you." It was such a simple reminder to just breathe and to realize that I am in one of the best places in the world to be treated at and that I am working with the best of the best medical staff. He, in particular, has a huge reputation in the lymphoma world and authored the study that I am on. I was a bit humbled.

He ordered the chemo and Craig and I headed to the chemo suite waiting room where we settled in for what we knew would be a long wait after our experience the previous month. We had DVDs, games and books at the ready. But before we could even start up the laptop, one of the
session assistants came over to me and whispered that I was wanted back in suite 1, that I wasn't going to be receiving treatment.

My heart sank and I was in complete shock, immediately filing through what possibly could have happened, a slight terror shuttering through me. I honed in on the fact that the little finger prick I had received early in the morning had elicited enough blood to sufficiently soak through the layered gauze and eek through the Band-Aid that was wrapped around it. I came to the hypothesis that my platelets must be very low. Damn it.

We got back to the suite and were immediately grabbed by an unfamiliar nurse who pulled us into a teeny room full of files and computers and told us to wait for the doctor. I heard her say to someone outside the door who was questioning our presence there: "It's just for a minute. It's a very special circumstance." Craig and I looked at each other with the panicked: what the hell is going on? look.

Dr. Moskowitz popped his head in with the update: "Your platelets are too low."

Ah, I was right. Platelets are the blood cells that help blood stick together and clot. If there are not enough of them present in my bloodstream and I were to cut or badly bruise myself, I could bleed to death. He explained that my count registered at 45 K/mcL (reference range 160-400 K/mcL). On the study, it is written not to treat someone under 75 and he explained that even if I wasn't on the study, he would never give a patient another round of Bendamustine with a platelet count under 50. No chemo for me. I wouldn't be able to get a platelet transfusion either. What I needed was time for my numbers to recover naturally.

"We'll try again next week," he said through a smile and told me to get my blood counts checked locally the day before and have them faxed. As instructed, I had been doing this once per week for the three weeks prior, but my counts had held and apparently none of us imagined that I'd suddenly drop so low four weeks after treatment. This was supposed to be treatment week.

This was frustrating, very frustrating. And even though I wouldn't be receiving chemo, there was still lots of waiting to be had. As a post-autologous stem cell transplant patient I still have to receive monthly Pentamidine breathing treatments to prevent me from contracting PCP pneumonia. We waited. And waited. And waited for my name to be called by the respiratory therapist. Soon I began to go batty. We were both exhausted, disappointed and frustrated, so much so that I just kept laughing for no reason and kept pretending my iPhone was a taser and "zapping" Craig with it, which kept me very entertained. Reading, writing, games were all far too much to concentrate on. Hearing Craig say back: "Don't taze me, bro" a few times over was much funnier.

Two-and-a-half hours later I was brought into a little room and zipped up in a plastic tent just wide enough to envelope me and my chair – similar to E.T. when he's being examined by all of those scary scientist men. I sucked the medicated mist from my plastic peace pipe until the 20 minute treatment was over and I could be unzipped and released out into the world.

We crashed hard after a taxi ride back to Miracle House. We stayed the night and made the most of it. Plus, we were in one of the newly renovated apartments at MH – very hip. After a big nap broken only by the incessant honks of the backed up cars in 43rd street rush hour, we watched Toy Story 3 then meeting up with good friends for dinner at Five Napkin Burger - a super trendy joint in Hell's Kitchen. Laughs, shared stories, and mile high burgers helped alleviate the frustration.

Now it's back to the city in T-2 days for a second attempt at this.