Wednesday, October 13, 2010

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.


  1. I'm exhausted just reading about all you did!! Your energy continues to amaze me. Glad you're feeling better. Enjoy your couple of weeks off. Always in my thoughts and prayers

  2. You're an amazing spirit, Karin. It's contagious! Love the photo of you and Craig - such a good looking couple you are!!

  3. karin,
    my thoughts and prayers continue to be with you. may god continue to give you the strength to carry you forward.

    jaime seltzer

  4. good luck with everything!!! I'm crossing my fingers for you that this is what will do the trick :)
    oh and by the way, I'm assuming you already know about these but in case you dont, check out I'm too young (i2y) at and Planet Cancer i2y just redesigned their site so it's a lot easier to get to their resources, and planet cancer has a great community and discussion forum in case you want to chat with other young adults with cancer.
    Again sorry if you already knew about these but just figured I'd comment in case someone else is reading your blog who isn't aware of these resources.

    Once more good luck with everything, enjoy new york and your blog has given me a lot of energy for dealing w my own disease so hopefully I can send some positive thoughts your way too!!! :)