Allo Transplant Day+25

It is Day +25 and I am thrilled to report that I'm feeling strong enough to finally write – at least at this current moment. On July 5^th I left the hospital after a 27-day stint. Craig and I moved into the American Cancer Society's Manhattan Hope Lodge, free housing (and so much more) provided to cancer patients. I've been here for six days and am so thoroughly impressed and in awe at the generosity of this place. I am comfortable here and love the fact that I can say I am now a New Yorker – I always did have a tinge of regret that I never lived in the city and now, here I am. Maybe it’s not the circumstances I expected, but I still get the opportunity to live in a 12^th floor corner “studio” with huge windows facing the gorgeous architecture of the buildings surrounding us on 32^nd Street, nestled between 6^th and 7^th, the fashion district, Chelsea, and Koreatown just blocks away.

Even though I’m here because I have cancer, I still get to have a rooftop terrace to sit out on with succulents and greenery and fashionable, comfortable patio furniture. When I look to the right I see the Empire State Building up close and personal. When I look across the street I can see the iconic sign for Macy’s Department store – the biggest retail store in the world and the center of Virginia’s Santa Claus revelation. When I look to the left I see a brick office building with the most intricate, lush climbing ivy that I’ve ever seen. It moves in the wind revealing ebbs and flows of light to deep, rich greens. Just past that there’s Madison Garden and Penn Station – the busiest train station in North America. There are parks and common areas and outdoor movie screens and a 3 floor 99 cent store ….. so much around.

I’d say I’m in a pretty cool place. Only problem is I’m supposed to avoid crowds, which is a wee bit difficult with x-million people crossing through the area per day. So far I’ve been watching them like little ants bustling around while I sit like a cat on a perch looking down from my room above. I love the unique beauty, the action, the bustle: it infuses life into me while I currently move at a snail pace. It’s a nice balance. I am allowed to be outside; I just need to wear a mask and gloves and not touch or rub up against anything or anyone – contact is the biggest enemy, but the chances of germs hopping through the open air are slim and my doc wants me to be out and walking little bits each day.

My start of physical recovery has been hit or miss by the hour, literally. Side effects fly in and out with no warning. But I would say that overall I am mountains better than I was last Tuesday when I was released. When I say mountains I mean I can be on my feet for more than 2 minutes. I mean I’m not constantly nauseous. I mean I’m not doubled over with abdomen pain. They are small accomplishments, but to me they are mountains. Slow and steady will win this race.

Craig has been there to catch me through it all and handed off the caregiving to my mom this weekend who also got to catch a bucket of puke, an unexpected full Saturday at the clinic, and a lot of snipping and swearing and crying on my part. Here’s a sampling of what I’ve been going through over the past five days: intestines aching with the newness of processing foods, severe migraines, swollen and achey joints, diarrhea and stools of shapes and colors and smells like nothing a human should produce, a few vomit sessions, several nausea swoons, a couple heaving emotional breakdowns, a regular patch of moss growing on my tongue, achey teeth bones, a very painful hematoma in my left chest/shoulder area – basically a big internal bruise and pooling of blood from when they put in/pulled out my catheter, the concerted effort to choke down 22 pills a day and a spoonful of gaggerificic white milky antifungal medication (Posacozanol) three times a day to wash it all down – a medicine that costs $1,000 per cough-medicine sized bottle and lasts a week (I’m grateful for the $75 co-pay), and of course tremendous fatigue from all of the above and the fact that my body is rebuilding itself from scratch and getting used to my sister’s blood sysyem being inside of it.

According to my mom, I said many things that Kristen would say this weekend and I blame her genes for the migraine-filled Saturday as severe headaches are something she is very prone to. I can also “blame” her for keeping me alive and giving me this literal second chance at life, so I guess that gets her off the hook, probably a free pass forever. Love you, sis.

But truly, each day gets better. I was in pretty rough shape, but I suddenly have some clarity again. Today I am wearing jeans (no, not even the pajama jeans currently being hawked on TV commercials) for the first time and I have not needed one cold pack or hot pack on any parts of my body. The clouds in my head have parted and though I still need a hardcore daily nap I was able to walk a few city blocks today.

I have been back to the transplant clinic at Sloan three times since my inpatient breakout. This will be the case for the next several months, which is why I need to stay here in the city. At clinic, my blood is drawn so that they can see what the levels of immunosuppressants are in my body. I take drugs called Tacrolimus and Sirolimus, which are the ones that control my/my sister’s growing immune system – the levels need to be constantly monitored and the amount of each drug changed as needed. The medical team also checks my blood count levels and all of my chemistries.

On Saturday (my very low day), I received a bag of red blood cells, a Magnesium boost and hydration, but otherwise all of my levels have been looking very good. This means that my sister’s stem cells are working to turn into what my body needs: my white cell level is good, platelets have stayed level and my reds are remaining in the anemic range but nothing worrisome, or new for that matter. Craig and I spent the morning in clinic today and all of my chemistries came back great; I was even taken off of my potassium supplements, a testament to finally being able to eat more and therefore getting my nutrients from actual food, and maybe more importantly, not shitting it all immediately back out. Many of the meds that I’m on can also deplete me of nutrients so supplements will be required for a while.

As expected I’ve dropped a lot of weight. I’m down to 112 pounds today (so about 16 pounds from my “average.”) That’s a bit scary to me, but doesn’t seem to be concerning to the transplant team. I’m really doing my best to amp up the eating and the weight will come back in time. According to People Magazine, I’m the same weight as Paris Hilton and skinnier than Kristen Cavelleri from The Hills – isn’t that something to strive for? I kid, and that actually makes me sick to read that being promoted. I look forward to building back some muscle and getting back my booty – all in due time. A lean svelte body is much better than skin on bones.

On the subject of looks, my hair is gone completely except for some little spikes in the front; it bothers me more this time around as it took so many months to grow back last time. I have all of my bottom eyelashes, but only a few top lashes on each eye. My eyebrows have thinned significantly, but are still there. I’ve lost all of my leg hair except for patches on each knee. I have a few new scarred holes in my chest from the catheters. My skin has more chemo burns and darkening. These are all very inconsequential and unimportant things, but I can say that it is more difficult being bald and eyelashless this time around. I don’t like looking in the mirror and seeing such an obvious patient staring back to me. I guess I really did get used to having my curly hair and being able to hide behind that a bit even though I was still receiving treatment. But again, insignificant I know. I am just tremendously grateful to have gotten this far.

I am clearer and can start to look back a little bit onto what I’ve been through. I’m still not quite able to look at pictures of me in the hospital and I’ve not been able to bring myself to read my last blog; I have no recollection of what it says, I only remember that I was crying through writing it all and quite tripped out on medication. I see now that apparently I got through by just putting my head down and ramming through like a freight train. I dealt with each issue as it came up, focused on that and pushed through it. There was not room to do much else. I don’t remember much at all; I don’t remember what I talked about with people nor any of the really bad stuff. I remember the good things, the unreal kindness of the medical staff, and the times that I felt a little bit well. It’s like I had blinders on through the difficult stuff; it comes back in little glimpses and I shudder at those memories but am also proud.

I know for certain that what really got me through was the stacks of mail – packages and cards and letters that brought so much joy, the texts and Facebook messages and e-mails from friends, family, co-workers, perfect strangers, fellow cancer warriors. Visits from truly special close friends – my childhood best friend traveling all the way from middle Connecticut, by herself just to spend the afternoon with me, my parents, my brother and sister. It didn’t matter that I wasn’t strong enough to respond to people nor coherent when they visited, the support just continuously pours in. Like I said, right now I don’t necessarily remember what they said, but I do remember it lifting my heart. Pictures of my life outside of that room, of my family, friends, beautiful places I’ve been and seen and conquered and Miss Sammy, Sammy, Sammy got me through.

I still cry when I think about the deep kindness displayed from the people in my life. I have a second cousin that sent me a “daily photo from the farm” every day with a picture and funny anecdote about her kids or their animals or the beauty of nature on their country home. I have a dear friend who sends me a “daily photo of the outside” from some of her favorite spots in Hoboken to city and nature scapes. My mom’s best friend sent me an encouraging text every, single morning without fail. At my request, every night, whomever was with me would tuck me in and read me poetry. Our friends who are watching Sammy would Skype us in with her and have created a Facebook photo album constantly updated with funny pictures of her and their dog. That’s just a glimpse at the love that I felt all around me lifting me up.

Even to write about it is making me cry at this moment. I am forever, ever changed by what this experience has revealed to me about the human spirit and what true connection means. And my husband and immediate family? Words can’t even begin to describe the support and love and encouragement I’ve gotten in that department. My husband is cut from an incredible mold; he is with me by my side, always.

Sigh. So that is where I am at right now. Tomorrow I look forward to a breath-focused yoga class being offered here at Hope Lodge. Tomorrow night a group of singing lawyers is coming to entertain us and later in the week I’m going to take advantage of a session with a Qi Gong healing touch volunteer. There is much more to be written about the oasis that is this place and the amazing people from around that globe that I’ve met here so far and who are right with me in their own cancer journeys.

Medically, I am back to clinic Thursday for a levels check. Next Monday I’ll get a PET Scan and Tuesday a bone marrow aspirate to see what’s going on inside. The look at my bone marrow will reveal how much of my sister’s immune system is within me. The PET Scan will give us an idea of what’s going on with the lymphoma – if there is anything at all.

I am one quarter of the way through the big “first 100 days” and so far I’ve made it through without any major complications and no signs of graf vs. host disease, though onset doesn’t usually happen until Day+60 or so. Though very tired, I am grateful, humbled, proud and in love with life no matter how very, very, very difficult it might be sometimes to function in it. I can still feel the breeze on my naked head and spoon with my husband on a warm summer’s night. That makes it worth anything and everything.

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.

Bendamustine Treatment One

The next part of the adventure has started. It was a whirlwind of travel, logistics, appointments, infusions, and some fun mixed in. Now I am back home and it's all setting in hardcore. I've attempted to write for many days but it has simply been too difficult. My brain was softened to potato mash. Finally I'm starting to feel close to myself again. Just when I didn't think I was going to pull out of it the light started to shine through. I'm astonished every time this happens. This is now the 18th chemotherapy drug my body has been subjected to and nearly the 40th infusion it's bounced back from. The recovery seems to be a little longer and a little slower with each time but together we get there.

The Bendamustine recovery required a lot of sleep. I was asleep more than I was awake over the past four days. If I wasn't sleeping I was zoning out at the ridiculous television, or at nothing at all. I've been sleeping 11-12 hour nights on top of all of that napping. But it did the trick. I had to shut down before I could start back up. That does not mean I enjoyed it. I've been crabby, angry, irritable and unstable. My husband deserves a medal. But I think it's getting better now. Today, Craig and I were able to go for a 90-minute walk in the woods and even got to Trader Joe's to stock-up on goods. It was a very welcome change and I was happy not to miss another day of these incredible blue skies and the fiery foliage painters swoon for. Things are not perfect by any means, but it's a stark contrast from the helpless, bitter Karin of just days ago.

We left for the Big Apple last Wednesday and had our first stay at the Miracle House apartments. The apartment building really is quite swanky. The door men and women are white gloved and extremely friendly. Each morning there is a bowl of fresh fruit and coffee for residents to grab on the go. Craig took advantage of the gym and there's also a relaxing theater, lounge with billiards, laundry room, and a pool. Though the Miracle House residents don't pay the $5,000/month price tag, we still get to take advantage of all the building's facilities.

We shared our particular apartment with two other couples – one from California and the other from Vermont. Each of the women were also cancer patients. They were all so incredibly easy to get along with, respectful, helpful, assuring ... I suppose everything that the whole nonprofit is set up for. We could all instantly relate to each other and be there to support each other's treatment adventures and doctor's appointments during the days we spent together. We shared a lot of laughs and insights.

Our room was modest but had everything we needed. However, sleeping through the honking cars and blaring sirens of Manhattan was tough to get used to. And as Dorothy says, "there's no place like home." This is most definitely true when you're facing daunting days of treatments and procedures. But we made the most of it and took advantage of both a group dinner and a breakfast at the Pom Pom Diner just a couple of blocks away. A Miracle House volunteer met us and others staying in the apartments to treat us for the meals and give the chance to find some friendship amidst all the chaos we're all experiencing. The portions were large and their contents hot and buttery – good for the stomach and the soul. We were all of different ages and backgrounds. We talked about music. About our dogs. About where we're from. A little baseball. A little real estate. The treatment/illness talk certainly did not dominate, and when it came up it was brief and the empathy around the table was palpable.

Wednesday featured a baseline CT Scan. That meant another huge serving of tart raspberry chemical contrast, requisite red tongue and all. Thursday morning brought with it both a bone marrow biopsy and my first Bendamustine infusion. It's safe to say that bone marrow biopsies are my least favorite cancer-related activity. It's just plain awful and I was actually quite worked up about it. However, when I signed on for this I knew it was a necessary evil as a baseline for this clinical trial. Every time I've had one, the person performing it has a rough time getting through my "strong bones," various hammers or drills have to be used, and I was awake and aware through the whole thing. Local anesthesia or not, I most certainly feel the pressure of needle jamming into the center of my bone.

I happened to have a bottle of Ativan with me and was more than encouraged by my doctor, the resident and her nurse to take it. I especially liked my nurse Brynn's sentiment: "Shit. We're going to jam a needle into your back and you're going to be wide awake for it. I wouldn't let anyone near me without something to take the edge off." That made me feel like less of a wuss. I also knew that I don't do well with the sound of it all happening, especially if they needed to make use of the bone hammer. They were all totally happy with the idea of me listening to my iPhone while it all went down and were actually disappointed that they couldn't listen to Bob Marley as well.

It was comforting being in the exam room with all incredibly intelligent women. I pulled down my pants to partial moon position and laid on my stomach. Dr. Moskowitz wielded the tools and performed the biopsy while her resident rubbed my back and let me squeeze her hand and Brynn stood at my feet keeping a steady and comforting hand on my calfs which would jerk when the pressure got intense. Again, it wasn't pleasant, but I'd say it was the best experience I've had yet. I think the reggae and the girl talk vs. eerie silence broken by only bone chipping sounds had a lot to do with it.

From there it was on to chemo. Brynn spent time with me explaining the drug, its side effects and such. The usual list. She explained that we'd be "besties" and that I could call her for anything and never feel dumb. She's witty and sarcastic and wicked smart. I bet we will be besties.

Craig and I sat, and sat, and sat some more in the waiting room with dozens of other patients also there for chemo infusions. At Sloan, they do not mix the chemotherapy drugs until the orders come in from the doctor and we were told that takes a minimum of 90 minutes at the pharmacy then tack on whatever the wait ahead of us is. It's an unbelievable operation. The assistants will take your cell number so you can leave and do what you need to do and they'll call you when you're chemo order is filled. Kind of like waiting for an auto mechanic to work on your car – and just as slow.

We had put a bug in Dr. Moskowitz's and the assistant's ear that we had been given tickets to a taping of The Late Show with David Letterman that afternoon with the hopes of possibly being pushed through a little faster but I never thought it would happen. Despite arriving for chemo at 10:45, my name wasn't called until 3 hours later. Craig pleaded the Dave case to the chemo nurse telling her that we had to be at the Ed Sullivan Theater by 3pm or we'd have to forfeit our seats – could we possibly make it (big puppy face)? She replied: "How about I get you out of here in 30 minutes? But, you have to promise to tell me whether he wears a toupee or not. I've always thought that he does."

I loved her instantly, but still had my doubts. Chemo time is never what it seems. But low and behold, the pre-meds were all oral and the drug itself runs over 30 minutes. She had my port unhooked and we were in a cab from the Upper East Side to mid-town after just 35 minutes. After a terrorizing cab ride with the least aggressive cab driver we've ever come across we pulled up to the theater doors at literally 2:57pm. The young guy who gave us the tickets said they close shop at 3pm. If we got there at 3:01 we'd be too late. We were not.

The taping itself was exhilarating. The guests were Stephen Colbert, Johnny Knoxville of Jackass fame, and the band, Gorillaz. It was very cool to see Paul Shaffer and Dave up close and to see the behind-the-scenes workings of a late-night TV taping.

Then it was time to meet with our dear friends Lisa and Seth for dinner Hoboken, New Jersey style. I was probably on a steroid/celeb sighting high because I was never tired. Lisa escorted us from Manhattan on the short, but beautiful ferry ride across the Hudson to the one-square-mile ultra-cool town that is Hoboken. It was great to finally see their place and we were spoiled with a fantastic meal by the talented Chef Seth – including an apple topped ricotta pie – ahhhmazing. We climbed up the fire escape to their roof and took in the crisp night air and stunning views one can only

get among the unique offshoots of the great metropolis that is New York City.

Friday it was up early to trek back to Sloan for Bendamustine day deux. We checked in for the chemo to be ordered then spent the first couple hours of the morning in a park enjoying NYC bagels with strawberry cream cheese until the chemo dinged that it was ready for me. Again, all was finished in just over a half-hour. This is so much better than the five-hour chemo day stints that I've come accustomed to.

Again, on a bit of a steroid high and because we were just a few blocks away, we dropped in our friend Tiff, a college buddy of Craig's and got to catch up, see her fantastic apartment and her most adorable baby girl. I can only hope that my new kinky, curly Justin Timberlake 'do will soon transform into the fantastic soft ringlets of baby Izzy.

After this, it was suddenly nap time for me and Izzy. Both Craig and I passed out hard when we collapsed back on the wheel bottomed twin beds of the Miracle House. Bleary-eyed, but somewhat refreshed after a couple hours slumber we rolled downstairs to the lounge for a photo shoot with some Miracle House staff and volunteers. They asked if they could snap some shots of us for use on their website and in promotional and fundraising materials. Having much experience in nonprofits, fundraising, marketing and the like I know how important the "personal story" is so we made sure to be there for them. Craig and I also appreciated the opportunity to be able to meet more of the MH staff and to thank them for everything that they do. Posing for some pictures on the roof deck was the least we could do to help promote their important message.

It's appropriate that NYC is the "city that never sleeps" as we really didn't do much of it. We were both incredibly overtired, anxious and quite stressed. But, unable to resist the action all around us and thirsty for a diversion, we walked through the droves of Friday night city dwellers packed into the dozens and dozens of restaurants and bars that line the route from Hell's Kitchen to Times Square. The breeze was brisk and the energy of it all was electrifying as we ducked into a comedy club near Broadway to take in the sets of some up-and-comers. Me sipping a virgin pina colada and Craig a hearty Long Island Iced Tea, we drowned the stresses of the past couple of days in some laughs before a meandering 10-block, 3-avenue walk back to our home-away-from-home through the seas of people and lights.

The fun stopped Saturday morning as the Bendamustine spread its poison. Along with it came the worst heart burn and stomach acid of my life. I couldn't eat and I couldn't poop. Everything began to ache. Craig and I took separate trains home – him headed for a much-needed boys adventure and me back to Sloan for a quick Neulasta shot in the arm then to travel to my parents where I proceeded to melt into a blob. My brother was home from school for the long weekend and made me up some scrambled eggs which I force fed myself and sipped the milk that he assured me would soothe my burning chest. He passed out on the recliner and me on the couch as Happy Gilmore blared in the background.

Sunday was just a blur. Its only highlight was picking Sammy up from her days away with Melissa and her chocolate lab Ruby (Sammy's bestie). Sammy was just as tired as me and Craig from all that butt sniffing and bone stealing and the three of us were a pile of zombies cuddled under blankets. The erratic voices of Sunday football announcers took us in and out of sleep. This groaning routine spilled into what was suddenly Monday night football.

I now have three weeks to recover then it's back to New York to do it all over again. Just thinking about it makes me exhausted.