SGN-35 Treatment 4

I was back in the chemo chair at Sloan-Kettering yesterday for infusion four of the targeted drug SGN-35 (Brentuximab Vedotin/Adcetris). My mom accompanied me for support, company, and as post-train car driver as I’m a wuss when it comes to handling the Benadryl that I am pre-treated with.

It was a smooth, but slow process. Clinic was running late. It’s just the nature of the beast as the needs of those coming in for treatment and doctor visits are just so variable. Though the infusion is only 30 minutes, the entire process of waiting to see my doctor, seeing my doctor, waiting for the drug to come from the pharmacy, and actually getting my port accessed and the drug infused totals about four hours. Add in the 3-hour travel time each way and there goes the day. Three years of it has taught us how to prepare with good books to read, phone charger at the ready, and loads of snacks.

My blood counts look fantastic. Everything is in the normal range and I don’t even show a trace of anemia, which is very rare for me. The only thing that remains out of whack is my sed rate, which isn’t unexpected due to the lung inflammation and steroid course that I am on. It’s not even registering at greater than 100.

Dr. Moskowitz did notice that I’m developing some thrush in my mouth, which happens with a high-dose steroid course. It’s white and dry and bumpy in there – yuck. I’ll be doing a prescription mouth rinse to combat that. My lungs sounded pretty good and there were no palpable lymph nodes or really any serious concerns to mull over. It was a painless and event-free visit.

We talked some about how we’re looking at my disease as a chronic illness now – something that I can live for a long time with as long as we can maintain control without detrimental toxicity. I asked her to try and qualify me somehow against other HL patients to get an idea of where I stand against this disease. I realize it’s an arbitrary question, but she so thoughtfully talked me through where I’m at, where I’m going, treatments in development for me down the pike and provided me encouragement that I am doing extremely well given how heavily treated I’ve been. She actually said I was a “rock star.” This was a very welcome compliment as I often don’t give myself enough credit and can get very frustrated and impatient with my progress and capabilities. Sometimes it helps to put things in context. I could have it a whole lot worse.

Radiation Discothèque

On the table ready for blast-off

I never wrote in-depth about what this crazy thing called radiation was like. Now that those 10 days of targeted shots are haunting with long-term side effects, it seems appropriate to revisit this past spring.

March 8-21 was spent in New York City getting daily radiation treatments at Sloan-Kettering. The treatment was necessary to free my T-7 and T-10 vertebrae and my lower sacrum of some cancerous clusters that had grown and were causing me significant pain. If we didn’t eradicate them immediately, the risk was there that the cancer cells would break down my bones and collapse my vertebrae – a scary scenario. So radiation it was. The potential damage from it (like the lung inflammation I’m now experiencing) was far outweighed by the immediate danger I was in.

So to NYC it was. I was able to again secure a spot at American Cancer Society’s Hope Lodge so that I could easily commute uptown versus across states to make it to my sessions. I’d traverse there by subway, absolutely loving the energy of the morning commuters around me. The subway cars would be packed and I’d sludge up long lines of stairs and escalators to get to street level then join more morning New Yorkers pouring into the streets and traversing the blocks of the Upper East Side.

I’d pretend I was going somewhere much more enticing and cool than radiation treatment, traveling with my ear buds in listening to whatever artist in particular would get me pumped that morning. Most often it was the Into the Wild soundtrack with Eddie Vedder as I loved the juxtaposition to the gritty city. I molded into the habits of the others around me, often standing with one hand around a pole and another holding open a book as I read through the stops from Herald Square to 64^th and Lex. I learned the system and the maps and the shortcuts well. Despite being there for treatment, I adored my time in New York, especially being alone in New York for most of it, though the weekend company was welcome. It sated that long-ago desire to be a young career woman living in the bustling city. Two weeks was just enough.

Q: Will I Live or Die? A: Yes.

I am going to die. You are going to die. Every single one of us is. No one is invincible. Death is the only real guarantee in life. It’s what we do with that reality that matters. It’s when tragedies like that in Aurora, Colorado happen that these existential questions come to light. It’s a time to contemplate and evaluate and appreciate the reality of life and death. As many were, I was deeply affected when I heard the news of this unthinkable act. What human cannot pause and think about what something like that means for their own lives and the world at large? It’s something far too important to turn our heads at.

For me, it brought up a lot of questions: Why them and not me? What’s it like to be gone in a shocking instant versus someone else that has a long-term terminal illness? Is one ever preferable over the other? What is worse for the victim? How about for those they leave behind?

Why am I, with a body that was full of lymphoma from nearly every lymph gland right through to my spleen, now not just surviving, but I believe thriving, while a six-year-old out for family night at the movies had her life cut short at the hands of an erratic and disturbed gunman. These questions are unanswerable.

I'll Settle for a "C"

This is what the test looks like. Obviously that's not me in the
picture, but that woman's got a sweet 'do.

For every difficult moment dealing with at-times harsh and frustrating medical world, there are dozens of tender ones that put me back in confidence and at ease. I’m extremely fortunate that many more times than not, I’ve had very good experiences despite the often difficult circumstances.


Since the inpatient debacle of last week I was connected with a pulmonologist at Hartford Hospital who did a full work-up of my inflaming lung situation. My local oncologist, Dr. Dailey, got me in with him, highly recommending his expertise. He never steers me wrong. I was extremely impressed with how thorough this doctor was with me, how much homework he had done on my case, and how much time he spent with me even though I was squeezed in as a last-minute patient. (Housekeeping note: Full disclosure that I work for Hartford Hospital, but this is written with my patient, not my marketing hat on. As it has always been, my opinions and experiences expressed on my blog are solely my own and no reflection of the hospital’s.)

The pulmonolgy team hooked me up right. I worked with a wonderful nurse who walked me through a full Pulmonary Function Test. This involves a series of breathing tests done into a mouthpiece and tube that measure how much air my lungs can take in, how much they blow out, and how well it circulates the oxygen through my body. I’ve had many of these workups done since beginning chemotherapy treatment, and I admit they are one of my very least favorite types of tests because it is so defeating. I already have reduced capacity from the Bleomycin of my frontline ABVD chemotherapy treatment. Bleo is known to cause lung toxicity. Now we know that the radiation – and possibly the SGN-35 – have also sucked a bit of the healthy function away. The old irony of cancer treatment: toxic medicine.

Scave

I realize I missed last week’s blog entries, but I have a good excuse. I was computerless and breathless and enduring a regular shit storm of fear, anxiety and frustration. I was very “scave” on Tuesday as I swallowed some tough news with some good news and realized that I’ll have to make some very big decisions. Those that have read Emma Donoghue’s book Room know what “scave” means: a combination of scared and brave, a mentality that helps a five-year-old cope in an extreme situation that calls for him to be hero. It’s hard to be brave all the time, and no one wants to be scared. Being scave is the sometimes the best way to cope.  

As the prior week progressed, so did back pain. It started as a mild uncomfortable feeling then swelled immensely in my mid-back with a penetrating, emanating fierceness. But I had plans to attend what I knew would be a transformative and healing weekend at a workshop with one of my favorite wellness gurus, Kris Carr of CrazySexyLife.com, at the Omega Institute in Rhinebeck, New York. I was right. It was just what I needed, and I’ll write more about the lessons I learned there. However, I needed a whole lot of ibuprofen and bags of ice from the first aid office to get through my time there. My little dorm room was way on the top of the campus hill and with each day it became increasingly harder to get up there with any breath left.

I knew something wasn’t right and debated a few times leaving the wooded campus for Manhattan and checking myself into Urgent Care since I couldn’t reach my doctor over the weekend. But I knew that there would be enough poking and prodding to come and that one more day wouldn’t kill me, so I enjoyed Omega’s offerings of healing and connection through the remainder of the weekend. I’ve come to learn when I can push the limits of addressing and ignoring the medical issues that creep up and am now more selective with my freak-outs after years of experience. I’ve also become good at making excuses to myself when I don’t want to acknowledge that I’m still dealing with this. I had done a lot of paddle boarding the previous weekend so of course that was what the back pain was from. The air was real thick so that’s what was compromising my lungs. And the dizzy spells? Well, it was only because I was sitting on the floor for long periods of time in workshops.

But excuses can only be made for so long when living in a world where disease reigns supreme. Come Monday, I made the call to my lymphoma doc and they didn’t like what I was telling them. At this point I had started to suffer from choking coughing fits that brought me scarily close to being unable to catch my breath gagging and gasping like a drowning person. As I assumed would happen, my team pulled some strings and got my PET Scan bumped up to Tuesday – a dauntingly early appointment that had my parents and me on the road at 5 a.m. They were kind enough (and probably worried enough) to offer to drive me in.

Hairballs

For nearly two weeks now I’ve been waking up with mouthfuls of hair being inhaled throughout the night from the pile of brown curly strands that’s been decorating my pillow.

The day after my most recent SGN-35 treatment I felt it happening; I could literally feel my hair follicles letting go and dying off. My scalp very suddenly burned, tingled and became itchy, and when I reached up to soothe it, my fingers returned wrapped in dark strands of hair.

Watching this process slowly happen has been defeating and quite frankly, a little devastating. I never expected to lose my hair with this drug as it is supposed to be so targeted toward the CD30 markers that reside in the Hodgkin lymphoma cells that it wouldn’t have the capacity to bother with fast-growing hair cells.

A Big Box of Love

Sorting and organizing the goods.

I had briefly mentioned in a recent blog that we took up a collection of needed supplies for the American Cancer Society’s Hope Lodge: NYC at our "3 Birthdays for 2 Diamonds on 1 Day" bash. However, more than a passing mention is needed. In lieu of any gifts for us, we asked that people coming to our party bring a little something off the wish list of needed items provided by Hope Lodge staffers. What are needed there are the everyday items that provide the comforts of home for the Lodge's residents. 

Hope Lodge was our home for the whole of summer 2011: July 5-September 2, following a one-month stay in my quarantine room at Sloan-Kettering. Hope Lodge was also my home this past March when I lived there for another two weeks while undergoing daily radiation treatments at Sloan. All of their housing services and programs are provided free of charge to patients and their families forced to be far away from their homes to endure vital cancer treatments. It is an incredible place.