Friday, January 21, 2011

SGN-35 Treatment Two

I got through the second infusion of SGN-35 without blowing up or caving in and for this I am grateful and happy.

My mother accompanied me to Sloan-Kettering this time around. My appointment with the doctor was early – 8 a.m. on Thursday so we trekked into the city the afternoon before to avoid wee morning hour travel. My anxiety built for the few days leading up to yesterday. Wednesday I did my usual dragging feet routine. I slept until 9:30 a.m. (very late for me) and found many, many things to do around the house that morning. I didn't get into my car to drive to my parent's house until the last possible moment. I was procrastinating the inevitable I suppose ... the knowingly placing your hand on a hot burner phenomenon.

The train ride in was uneventful. As I usually do, I decided to factor some NYC culture into our agenda so that the trip wasn't solely medically related. I like to have that balance and to take advantage of the time that I get to be in New York City because soon, I'll be confined to my hospital room for many weeks and will be restricted from those things that I love – good restaurants, theater, museums for a very long time. But that is not now so I must live and love them now.

After checking in at Miracle House, we walked to dinner at a Hell's Kitchen hole-in-the-wall Thai restaurant my Manhattan guru Lisa recommended: Olieng Thai. There are just seven tiny tables and the staff is sweet and so friendly. The walls are covered with affirmations, quotes, romantic musings and food recommendations shared by diners who had scrawled with neon pen on the mirror lined wall. My mom enjoyed stir fried veggies of all sorts while I warmed my insides with a fragrant bowl of yellow curry with sticky rice to soak it up with. We topped it off with green tea and shared a fried ice cream – what an intriguing, indulgent combination that is!

In my chemo procrastination/denial stupor I had come across reviews for a play on Broadway called "Time Stands Still," which is running for just another couple of weeks. I fell deep into reading all the reviews, about the story line, the Pulitzer Prize-winning playwright Donald Margulies, the esteemed four-person cast of award-winning actors, including Laura Linney and Christina Ricci. It lived up to its reputation.

I treated for nosebleed seats. We were in – literally – the last row of the theater at the very back of the rear balcony among all of the college theater students, but this truly did not hamper the experience. To see a show of that caliber for only $34 was completely worth the four flights of stairs we had to climb and the initial vertigo we experienced. But for real, the view was completely unobstructed and we were both immediately absorbed in and enthralled by the story. It chronicled a photojournalist and freelance writer forced to leave their adrenalin driven lifestyle of covering wars, genocides and natural disasters due to mental and physical injury and how this drastic change to "mundane" life effects them as individuals and their relationship. It was multilayered, intricate, delicate and so very real. I most certainly could draw some parallels to my own life and some of the lines Laura Linney's character, Sarah, delivered were ones that have come out of my very own mouth: i.e. "Don't touch me. I can do it myself!" as she's trying to manage with a brace on her shattered leg.

As an added bonus to an evening of great theater – the kind of story that I'll ponder forever – we got to meet some of the actors afterward. We just happened to stumble on a crowd and barricades at the backstage theater exit and saw both Christina Ricci and Laura Linney leaving in their street clothes after the performance. Each signed autographs and posed for some pictures. I felt fortunate to have the opportunity to tell Laura Linney how much I enjoyed her moving performance ... and now I have her autograph on my Playbill and a picture my mom was able to snap of her giving it to me. Now I must watch her Showtime series: "The Big C" about finding the humor in a cancer diagnosis.

All of that excitement did wonders for squelching my anxiety about the next morning and for tuckering me out enough to fall asleep despite being in an unfamiliar twin bed on wheels with the even more unfamiliar sounds of car horns and rumbling buses 10 floors down outside our window.

Thursday morning inevitably did come and I woke surprisingly refreshed to the awful sound of my mom's cell phone alarm. Everything but the banana I had shoved in my pocket made it in one piece across the city to Sloan. Nearly immediately after I had my CBC done and vitals checked, we were called in to see the doctor. No wait at all. This is one of the benefits of taking an early appointment.

I presented my nurse and Dr. Moskowitz with the sputum I had caught for them in the sputum collector they had provided for me last time around. It was neon green and at once crusty and tissuey. I told them the color was an added bonus as it presented itself during my sinus infection. But in all seriousness, since my second relapse in July, I've been coughing up very strange objects (what I imagine to be fried lymph nodes). They come from deep in my chest and out my nose after much effort or sometimes just fall into my mouth. They always have the same shape and characteristics – nothing like normal phlegm. On the last visit, the doctor was intrigued by this and asked me to bring a sample. I was happy to be able to produce and am eager to hear what the microbiologists analyze it as. I have another empty spewtum cup for the next encroachment. This time it will go to the pathologists to analyze. How's that for excitement?

I also filled them in about the strange symptoms that I've been having: the left side body heaviness and occasional pulsing and awareness of the blood coursing through my veins and into my heart on that side of my body. It all goes into the notebook. The doctor said how happy she was not to have heard from me over these three recovery weeks as that meant that I was doing okay. She was also impressed to hear about the amount of activity I have been doing and told me not to get frustrated with myself. The words that really resonated were: "Karin, we're not giving you anything that is going to make me feel good" and I instantly remembered that even though I have my hair and I don't have the intense side effects of chemos of old, I am still on chemotherapy.

My blood counts were lower than I had expected. My white blood cell count is only 2.5 so I still have to be very careful to stay away from sick people. My hematocrit and hemoglobin are also low – hematocrit is only 29.6 (normal 34-46), which means that I'm still anemic and explains further why I've been so tired. There is still a massive battle happening inside my body and I can't expect to be feeling stellar. She's good at helping me to manage my expectations; at helping me be realistic but no less hopeful and expectant of what I can and will accomplish.

We talked about next steps. I have a PET Scan scheduled for two weeks from now: Feb 3. It will reveal if (that) the SGN-35 is working. Dr. M told me that it would be a surprise if the disease is completely gone after just these two rounds. Not that she was being negative, but she didn't want to get my hopes up. In the drug's studies, it has shown to take more like 4 cycles to eliminate Hodgkin's presence in patients. This test is just a test to make certain that there has been some reduction.

The infusion went well and the wait was much shorter than normal. My mom and I played Word Scramble on her iPhone while the drug dripped. My nurse was young, sweet, and very lackadaisical about SGN-35, which she was very familiar with. That helped to calm my nerves about having any reactions. And, as always, once it hit my veins and nothing happened, I could unclench my jaw. Forty-five minutes once all was said and done and we were through.

We packed up our things and were on our way off the floor when suddenly my breathing and chest were a little tight and I kept going into coughing fits anytime I tried to take a deep breath. I didn't want to go back into the infusion room but I also didn't want to leave the hospital in case something bad was happening to me. Despite my mom persisting that I go back in and tell the nurse, I was snippy and noncompliant and just wanted to get out of there. However, I wasn't stupid enough to leave the hospital.

So I found a chair in the lobby and sat. I breathed and people watched until the coughing ceased, which didn't happen until up popped another little organ into the tissue I was blowing into. After that passed through my inner tubing, things seemed to open back up. As far as normalizing my breathing, I was just short of needing a paper bag. But I knew in the back of my mind that I had gotten myself into a self-inflicted tizzy and that I could also get myself out. Nothing was wrong. I was just being paranoid that something could be.

After about 15 minutes of telling my poor mom to stop looking at me and asking if I was okay, it passed and we were finally in a cab to Grand Central and on the way home via a different train line to a different station because I could not wait the nearly two hours for the next train to Wassaic, NY, where we had left out of. I had some major ants in my pants and all I wanted was to GET HOME. Luckily my sister is flexible and picked us up in another part of the state – she could probably tell I was on the verge of a breakdown. I like to think that I'm pleasant to be around most of the time, but I don't know how they all put up with the brattiness that can kick in when I occasionally lose it.

Once the train lurched out of Grand Central and I sipped a little Dr. Pepper (odd how this non-soda drinker craved that) I felt better. Much of the ride was passed marveling at a big bellied man in an oh-too-worn white undershirt one cart up dancing in the vestibule like nothing I've ever seen. Killer moves. He was r-o-c-k-i-n-g out to whatever was pumping from his earbuds. I think he was singing as well, but we had the insulation of the cab doors between us to muffle that – probably a very good thing. That vestibule was his stage and he took full advantage of its space grapevining from one side to the other. He even incorporated the poles into his routine like a daytime stripper. It made me smile hard.

Now here I am back with Sammy and Craig and even more snow today. The sun is out and we had a beautiful, albeit tough walk in the additional six inches on top of the two feet we already have. I'm looking forward to seeing some good friends tonight but more immediately, to a much needed nap. I'm very exhausted, but very, very happy to have made it through yet another treatment.


  1. Karin - I'm thrilled and proud of how well you did on this trip to NYC. On Jan 27 at Craig's opening reception at 100 Pearl you MUST demonstrate some of the big-bellied guy's moves!
    Judy xoxo

  2. We are also so proud of you--quite an ordeal going to the city but you make the most of it in your usual positive way!!! I'm proud of your Mom too!!! I had my first sinus infection ever and I want to reassure you that those big lungers are something!!! Love you and Craig and Sammy and all the Dub's and Diamond's!!! xoxo Bev & Blake

  3. Although I do not know you, but I empathize with your fight against this disease. My husband had Lymphocyte Predominant HD in 1995. He went through 3 cycles of ABVD, when they discovered he was allergic to the bleo and had to switch to MOPP for 3 months. It came back in 1997 when he did his SCT. Prayer and music played a key role in encouraging him. My best friend just fought and won against it as well. She had nodular sclerosis type after ABVD, it recurred and she finally eradicated it with SCT too. We are praying for you. If its not to much to ask, can you share which kind of HD you were dx originally with? Keep up the fight.

  4. I also do not know you but want you to know that I am right there with you. I have refractory hd and am on sgn 35. Have had 3 treatments and will be undergoing my first PET under this treatment. Have been exhausted and in general feel lousy. Normally I am very upbeat and just continue to plug along. I pray that the drug is or has worked for you and that I too will show some improvement. Kim from Michigan