Bendy/Brentuximab Trial: Cycle I

I am one round into this latest clinical trial: a combined therapy of Brentuximab Vendotin (SGN-35) and Bendamustine. The premise of this Phase I/II Clinical Trial is that the drugs work synergistically for maximum effect against the disease. Dr. O has put one person with much heavier disease than I have into complete remission and two others had impressive disease reduction. I am patient number 6, part of the second wave. I hope to add to the positive statistics.

Both of these drugs are proven to work against Hodgkin Disease. I’ve had both on their own at one time or another, but apparently there’s something about the one-two punch and the science behind that.

Each cycle requires two days of infusions at Columbia’s clinic in midtown Manhattan. The first day I received both Brentuximab and Bendamustine, the second day was Bendamustine only. Craig was my partner in the city this time around: there to hold my hand, help carry my bags, find me food, keep me smiling and entertained – all things he is expert at and for which I love him so much. He secured us a hotel with an upgrade by pulling the cancer treatment card. It was right in Times Square and walkable to the clinic and Grand Central, which made things easy.

I had been feeling so awful that I was actually looking forward to starting treatment so that I could again begin the healing process. Therefore Craig didn’t have to deal with the normal caregiver duty of dragging me to the chemo chair. In fact, my body was so spent that it needed two bags of red blood cells the day before I was to head to the city and get treatment. My hemoglobin had dropped down to 7.6, explaining my fatigue and malaise. I had to get my counts high enough to be able to safely receive the treatment drugs and qualify for the trial. With the help of my local oncologist, Dr. D, I secured the apparently “last bed in Hartford Hospital” and hurried up and waited for blood. After they drew my type and cross to check my blood type things were taking excessively longer than normal, though it’s always a slow process.

Suddenly my nurse ran into my room saying: “You had a transplant, right?” Then ran back out saying she had the blood bank on the phone.

She ran back in a few more times with further questions: “Was it with a donor? Was it your sister? What is her blood type? Where did you have the transplant?”

Obviously something was amiss. I’ve been going to Hartford Hospital for years now, they have substantial records on me, and many of the oncology nurses know me well. I have always been O-positive blood type, but that night my blood was coming back as Type A-positive. The head of the blood bank and all the big wigs were pulled in to look at my case and they re-ran my blood and discovered that in fact, my type had changed more than a year after allo transplant. Apparently, this is a very common occurrence, but not so commonly seen in a hospital that doesn’t perform stem cell transplants. Just another bizzaro piece of science. Nothing surprises me anymore.

Once that got squared away, it took two hours for each bag of blood to drip. Sweet Craig stayed with me the whole time and we were finally able to leave the hospital around 1 a.m., get to the Avon clinic later that morning to ensure my counts were high enough, and then make the trek by train into the city via a gracious ride from my mom. So, so many logistics.

As always, there is a ton of waiting at this particular clinic, but once you’re in, you’re treated with the utmost time and individualized attention, which makes the wait worth it. It’s also been great for my reading portfolio. I’m finishing a book a week.

Infusion days went smoothly. The nurse and nurse practitioner that work with Dr. O are incredibly smart, caring, thoughtful, friendly and comforting. They are close to my age and we have quickly fallen into step being able to joke around and be very real about symptoms, side effects, etc. They are excellent at follow-up and side effect management, which is huge in my world.

Our view at "Once." 

Craig and I cozied in my little infusion cube, me under a blanket with the New Yorker and a space heater blowing at me; Craig on the laptop catching up on schoolwork and mindless videos. The time passed as pre-meds dripped then the drugs themselves. Nothing unusual, no glitches. We only had to be in clinic for a couple hours each day, then were free to explore.

We checked out some restaurants recommended by Manhattanite friends, took in some familiar Times Square sites, tried our hand yet again at The Book of Mormon ticket lottery (no luck), and rested in our teeny boutique hotel room. Since we were walking by in the evening, we took a glance at the TKTS board and saw that “Once: The Musical” tickets were half-off. I had seen the show in previews last year and (if I can boast) said that it would be the “next big thing.” Eight Tony Awards (including Best Musical) later, it is. Craig hadn’t seen it, so we decided to splurge. Like me, he loved the music and the energy of the show. All the actors are also musicians performing with their guitars, ukuleles, cellos, mandolins, etc. on stage. It takes place in Dublin and tells the story of unrequited love and musical inspiration. It was a romantic distraction from the real reason we were in the city.

Dave Letterman audience cheerleaders.

After the next day’s treatment we scored free tickets to a taping of the David Letterman Show. We’ve been to a taping before, but this time, we were profiled as “peppy and fun” and chosen to be one of the 24 people they put in the first two rows to be the “lead audience” members. I think both of our doofy smiles and geeky enthusiasm for freebies and behind-the-scenes stuff had something to do with that. Oh, how ironic it was though seeing as I was fresh off the chemo chair, still in a Benadryl and Decadron haze. But clap and cheer we did after our training session and we hope we did the show right as we laughed at Dave’s Top 10 List and enjoyed his interview with Kevin Spacey from spitting distance.

I’m not sure if it was the pepperoni pizza we had after the show or the drugs making my body angry, but I was up all hours of that night with atrocious heartburn and acid reflux. It felt as if someone took a blowtorch to my esophagus. Craig felt awful for me, listening to my moaning and tossing and turning and looked out our 17^th floor window from which he spied a 24/7 Duane Reade pharmacy. All of the sudden he had his pants on and was out the door and into the 20-degree-with-gusts-in-the-teens Manhattan streets at four in the morning. Dodging drunkards and hookers, he came back with Pepcid and a chocolate soymilk that was oh-so-soothing. That’s love.

Sad to say, it’s been a downward spiral from there. The weekend was okay. We had dinner out with our UConn friends, who are always a good time, breakfast with another great friend and then watched the Super Bowl with a bunch of our neighbors. If I can get myself out and around people I care about it’s amazing how much energy I gain from that and what it does for my spirit. It’s when I’m alone that things get really tough without the distractions. I had been overly tired and starting to have some pain set in during the days but just slept a lot and accounted much of it to all the travel I’d been doing and sleep I hadn’t been getting in addition to the treatment side effects.

Yesterday morning the pain came in with a bang. I woke up with severe pain in the bones of my pelvis, hips, and sacrum. It felt as if someone was stabbing them with scissors. When I stood, it felt as my pelvis might just give out and collapse, it felt so full and swollen. My mid-back also had shooting pains and all of my joints felt arthritic. I had suddenly gone from 30 years old to 90. I tried Extra Strength Tylenol but it didn’t cut it and I knew it warranted a call.

After conferring with Dr. O, it seems that the pain I have is a good sign. It likely means rapid tumor death, which can be very painful since the disease I have is confined to such a concentrated area. All of the meds and my own white cells are flooding my little bones and blowing up landmines in there. Being that the disease is within the bone means that this process can be very painful – and it is. I worry that the bones are just going to explode.

Our typical evening cuddle session does wonders for pain.

I have always had a very high pain tolerance and an aversion to pain meds as I cannot tolerate most of them because they make me vomit and make me feel loopy. But now, I cannot function without some relief and I need to ride this out. He expects that the pain will fade after about a week or so. I’m much more accepting of pain if it means positive things are happening, but it doesn’t change the fact that it is leaving me in tears.

I’m working with the team to find some pain management options that will get me through this week without leaving me a vegetable, keeping me pain-free and not a walking ball of nausea. I’m going to be trying a patch, which seeps the medication in through my skin rather than pills as that may eliminate the GI effects for me.  I need to get over my own mental stigma that using pain meds means I am weak, because it doesn’t. This isn’t a power trip. I’m trying to survive here – one moment at a time. Relief will come. Until then, I keep remembering to breathe. 

Well, Happy October

My opponent: Reed Sternberg cell indicating Hodgkin Lymphoma presence. 

It looks like owl eyes or a pig's nose - or a big asshole, depending on how you
look at it. 

October did not get off to the start that I hoped it would. It’s turning into autumn, the leaves are a golden palate and the air is getting crisper. With that, I knew would come my own change, as always happens at the crossroads a PET Scan provides, but this was not the change that I wanted.

My October started with a figurative punch in the face, and then the gut, and then a few more times in the flank. I didn't even see it coming. I had no time to put up my dukes. 

My mother and I sat in the small, harshly bright exam room awaiting the scan results that Dr. Moskowitz would bring in with her.

“So you’re feeling well?” She asked, having already debriefed with her nurse that I met with previously. “That’s great … .” she trailed off.

“I feel very well except for the anxiety I have over this scan,” I replied.

“Well, the scan doesn’t look great,” she said. I know it was difficult news for her to deliver.

No, it doesn’t look great. There are new lymph nodes lighting up in my chest and abdomen, which likely indicate new disease sites. The bone involvement in my hip, pelvic and sacral areas is much hotter than my last scan indicating increased metabolic uptake. My bone lesions are the worst, as evidenced by the higher SUVs (a measurement of the absorption of the radioactive tracer I was injected with, calling out the highly metabolically active areas). The left iliac wing had an SUV of 2.7 on my July scan and is now up to 15.5. My right sacrum went from 2.3 to 7.5, and my right femur from 7.7 to 10.7 SUV.

I don’t understand. Could it be all that dancing I did at Thea’s wedding Friday? Could that be giving a false read? I asked her how they know that this is more cancer and not just inflammation from my own body fighting the cancer itself in those areas. She said that they don’t know anything for absolute certain, but the fact that there are new areas of internal swollen lymph nodes (with SUVs up to 11.4) makes it much more likely that the disease is again on the rise and has again learned to morph around the treatment that was keeping it stable. It’s a son of a bitch.

We've taken me off the SGN-35. I did not get the treatment I was due yesterday. It is obviously no longer working. There is no plan right now, we’re grasping at straws for what to do next. Part of me just wants to sit on it and see what happens. The fact that I had an allogeneic stem cell transplant excludes me from many clinical trials of new drug agents. We’re looking at MTOR and HDAC inhibitors, though I’ve already tried many of them. We may need to revisit some of the drugs I’ve already been on in those categories, though many haven’t been approved for Hodgkin’s yet, so I’d have to be receiving them off-label and risk my health insurance not covering them. I’m slated to possibly try a very new drug with Sloan-Kettering’s Phase-I trial clinic, though it has never been studied in a Hodgkin’s patient, but does go after a protein expressed in Hodgkin’s cells and therefore has potential.

My head is spinning. I am overwhelmed, sick with worry and shock. Today has been alternating crying with clinical trial research, medical phone calls and e-mails to doctors I’ve worked with in the past and contacts I haven’t yet tapped into. I’m open to traveling anywhere I need to to find the treatment that I’m still seeking to put me in remission. My confidence is waning a bit, but I do believe that the key is still out there.

I am fortunate that I am feeling no pain at this time and that I am otherwise healthy and strong if you took the lymphoma out of the equation. That is a crazy reality to me. There has got to be something that will get this disease in check. I don’t understand why I have to be the one dealt this deck. Why do I have to have the unrelenting syncytial variant type of Hodgkin’s lymphoma? Why do I have the bone lesions, which make this disease nearly impossible to wipe out?

I have my game face on and am delving into the required research, but I’m hurting pretty badly inside. I just truly thought this drug would have given me more time. I had a good run and I wanted more.

No one can ever say that I haven’t tried. I have been treated at four institutions, two of the best cancer centers in the nation, I am seen by a hematology oncologist, a lymphoma specialist, a transplant doctor, a radiation oncologist, a naturopath physician, an oncology psychiatrist. I have shoved all of these treatments into my veins, down my throat or radiated through my body:

Chemotherapies (Nearly 30 drugs in 3.5 years):

• Six cycles of ABVD chemotherapy (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine)
• 3 cycles of ICE chemotherapy (Ifosfamide, Carboplatin, Etoposide) 
• DI-CEP (Dose-Intensive Cyclophosphamide, Etoposide, Cisplatin)
• BEAM (Carmustine, Etoposide, Cytarabine, Melphalan)
• Three cycles of GND chemotherapy (Gemzar, Navelbine, Doxil)
• Two cycles of Bendamustine on clinical trial
• Four cycles of SGN-35 acquired on compassionate use basis 
• Two cycles of Phase I/II Clinical Trial of Panobinostat (LBH589) and Everolimus (RAD001) at MD Anderson Cancer Center in Houston, Texas
• Fludarabine and Melphalan, plus Methotrexate injections
•  Vorinostat (SAHA) 
• Revlimid (lenaldiomide)
•  Five cycles of Vinblastine
• Cyclophosphamide, Etoposide, Procarbazine oral chemotherapies
• Post-transplant retry of SGN-35 aka Adcetris or Brentuximab Vedotin for 7 cycles

Radiation:

• 10 days of highly targeted radiation to T7 and T10 vertebrae and lower sacrum

       Immunotherapy:

•  Mini Autologous Stem Cell Transplant
• Full Autologous Stem Cell Transplant
•  Allogeneic Stem Cell Transplant 

What’s left? Anyone have any educated ideas, please feel free to send them my way. If I sound snarky and angry it’s because I am right now, and I think I deserve to be for a little while here as this new information settles into my understanding.  

I’ll Throw You Off the Tappan Zee Bridge!

A while back while I was being injected with the radioactive dye that would reveal any cancerous cells within my body, a little boy was in the cubby next to me doing the same thing. He was maybe six years old. He did not want to be at the clinic that day either. None of us did, but he was able to articulate what all of us patients in the PET Scan pre-testing room were thinking with his cries and shrills that we all wanted to yell.

In between sobs he yelled at the nurse coming at him with the IV access needle:

“Get that thing away from me or I’ll throw you off the Tappan Zee Bridge!” He screamed the threat over and over as his mom tried to calm him down and the nurse continually tried to enter his vein.

“I’ll throw you off the Tappan Zee Bridge!”

“I’ll throw you off the Tappan Zee Bridge!”

I hear ya, little brother, I thought, feeling his pain.

It gets damn tiring getting poked and prodded and having to stand up to another round of treatment. I awoke yesterday knowing that I had to go in for a sixth infusion of Adcetris (SGN-35) and I was moaning to myself: “Don’t make me go. Don’t make me go.” But I had to also tell myself that having a treatment session to go to was so much better than the alternative. 

Riding the Waves

Some days it takes a very concerted effort not to completely unfold. It can be just plain exhausting working to tame the beast that is my emotions being toyed with by hormone injection and depletion by steroids. My brain becomes disconnected with reality and the highs get very high and the lows very low.

I am a live wire and I don’t know myself when I will lash out or who or what will take the brunt. The man clothes piled on top of, rather than in, the hamper? The RNC? The husband’s crusted cereal bowl that never made it the extra foot into the dishwasher? The sound of too many electronics going at once? The nail polish that smudges with fingerprints because of my lack of patience for drying?

It takes a tremendous amount of focused effort to keep myself stable as I ease off these steroids, handle the chemo drugs, and continue to process the trauma I’ve been through and the realties of the unknown ahead.

Most days I feel balanced and whole with only forward momentum. But some mornings bring with them a heavy weight, an incessant ringing in my ears of frustrations and questions, worries about the big things (my sister is driving across the country and my brother is getting married in two weeks, oh, and that cancer thing), worries about the stupid things (what necklace will I wear, organizing the pantry, fruit flies, which vitamin brand to take).

On the tough days, a blanket of angst shrouds and suffocates me so much that it can literally be hard to see through my eyes, which are so blearily exhausted from taking it all in.

Sometimes I just can’t shut it off and it makes me want to writhe and scream.

Instead, I do my best to breathe, let go, ride the wave and hope to hell that once I can push myself back out to the break point, the next wave will be a gentler ride in. 

August Status Update

With my amazing group of high school girlfriends 

at Lisa's wedding in late July, now nearly all of us 30 and 

growing even closer together with each passing year. Mer

gets married this weekend and Thea in one month!

Peripheral neuropathy has started to set in. This is an expected side effect of the SGN-35. The hope is that it doesn’t progress, as I know patients who have been on it that had to come off due to debilitating neuropathy pain. For me currently, I don’t have any pain, only numbness. I’ve had no feeling in the pads of all 10 fingertips for the past week. So far it hasn’t affected any of my abilities; it is just a strange sensation like when your fingers get cold in the winter and you can’t warm them up only it’s just a small section on each finger pad that has completely lost feeling no matter how much I rub them.

I also occasionally lose feeling or get painful tingling in my feet, especially after walking for some distance. The pressure on the pavement seems to get it going. The numbness will creep up my legs some, but so far it always resolves itself after a short period of time.

I do not want this to be the reason that I have to come off this drug, which so far has been successful for me. Tomorrow I am seeing an acupuncturist to start treatments to combat this and my doctor also recommended starting up on Vitiman B-Complex. I’ll do anything to keep the feeling in my limbs.

The Prednisone steroid taper continues. On each dose reduction day I most certainly feel the lurch even though I’m only dropping by 5mg every 5 days. I am now at 20mg (down from my original 60mg started on July 12 to treat my lung inflammation). Once I hit 10mg I have to drop even slower – by 2.5mg at a time – as there is a big risk of dependency and withdrawal symptoms if the body comes off the meds too quickly.

So, that means the bloated feelings, insatiable appetite and the ridiculously swollen moon face continue. Others “say” they don’t notice, but I don’t recognize my own face in the mirror as it’s completely changed shape with the steroid swelling. I want to eat all the time. Period. I’m doing my best to make big healthy meals so there is always something good to snack on. I’ve eaten orchards worth of fruit. I could eat anyone under the table in a contest, I promise. This pit is bot.tom.less.

As I come off the steroid I’ve been feeling some achiness in my hips and joints, but it is tough to know what is causing that. My pulmonologist tells me patients tapering off of Prednisone very commonly experience that achiness. However, it’s very hard not to get paranoid that the lymphoma is again flaring in my hips. I’m also more fatigued, but overall I really can’t complain at all.

I’ve been busy with lots of non-cancer related things like freelance writing and e-communications work, gearing up to be in one of my best friend’s weddings this weekend, spending time with Craig before he’s back full-time in the classroom tomorrow (or rather nursing him after he had an epic Superman over-the-handlebars mountain biking accident last weekend), enjoying this late summer weather celebrating, relaxing and adventuring with great friends, reading, walking, yogaing and playing with Sammy.

I will get my sixth infusion of SGN-35 on Sept. 10, just less than two weeks from now, so will be enjoying what is hopefully continued recovery from my most recent infusion until then. The good part is that Hartford Hospital is now administering the drug as it has been FDA approved, so I’ll be able to receive the infusion just 30 minutes away, rather than 3 hours away. Wonderful!

Then, I have a PET Scan scheduled for Oct. 1, marking seven months on SGN-35. Pending what the results show that day at Sloan-Kettering, I’ll either receive my seventh infusion right afterward or look at a new plan. If things are looking real good and the environment seems right, we may take the steps to move toward a DLI with some more of my sister’s natural killer cells. But let’s not get ahead of things … .

Right now I’m content, nurtured and happy and looking forward to what will surely be a beautiful weekend watching one of my favorite couples start their married life together beside the beauty of the Long Island Sound. Just hope that bridesmaid dress zips up for me.

This is Summer. Part 2.

Captain Jack reeling in the catch on the Lulu.

From the vantage point of the Lulu lobster boat, we saw both gray and harbor seals basking on a rocky island and their little baby pups with whiskered noses splashing in the ocean waves, three bald eagles perched above, and slews of indigenous sea birds. We asked dozens of questions of Captain Jack as he educated about the Maine lobstering industry, reeled in a trap of these fascinating crustaceans and taught us about their anatomy, mating habits, incredible regeneration abilities, and Maine’s conservation efforts.

We walked with Sam Dog to Bar Island, accessible by a sweeping sandbar that is only revealed at low tide. Miss the tide change, you don’t make it back. 

Taking a biking break on the Carriage Trails.

After very active mornings of outdoor adventures, huge mid-day naps were taken sprawled across the couch or bed of the adorable downtown Bar Harbor apartment we stayed in.

We found a great dive bar with “awesome hour” where we relaxed and played Finger Ringer and Rummy 500 while snacking on shoestring French fries served in a metal dog bowl.

Our bikes took us along the miles of carriage roads that wind through Acadia, making a big loop through the mystical scenery of Witch Hole.

Our Jordan Pond table view.

We discovered Acadia hiking trails that took us along boardwalks above marshes, through knotty pines, and along cobblestone seashores, finding perfect nooks for picnic spots to eat our home-packed lunches along the way.

After one bike ride we snuggled onto an outdoor table bench at the Jordan Pond House where we indulged in their famed hot popovers with homemade strawberry jam, decadent sandwiches, and fresh squeezed lemonade and blueberry herbal iced tea while taking in the beauty of the pond, Bubble mountains and surrounding forests.

The crisp, fresh water of Echo Lake reflecting the astounding green covered mountains that hug it turned a tootsie dip to test the water into a swim in my clothes I just couldn’t resist. I dried by the wind and the sun of the topless Jeep while we explored surrounding harbor villages.

An unplanned, irresistible dip in Echo Lake.

I abandoned all my anti-inflammatory, no sugar, no dairy diet restrictions for the week and indulged in wild Maine blueberry pie and more ice cream. The second ice cream night was shared scoops of the flavor “I Haven’t Decided Yet …” from CJ’s Scoop Shop made with Reese’s peanut butter cups, Oreos, cookie dough, chocolate chips, chocolate swirl, ya know, everything but the kitchen sink. I went all in.

One solid rainy day met a patio breakfast of berry muffins and crab and cheese omelet with our feet in a flood puddle but our heads dry from the rain. With full bellies the rest of the day was spent reading, writing, and napping inside to the soundtrack of the raindrops and thunder. We capped the night with pizza and a showing of the new Ferrell/Galifianakas flick The Campaign in the historic, though musty, Criterion Theatre.

Boardwalk trail near Sieur de Monts Springs.

I tried to catch another sunrise, leaving Sammy and Craig to sleep as I ventured out to Cadillac Mountain at 4:30 a.m. However, the dense fog made it impossible to see much of anything at all. The higher I drove, the denser it got, so instead I took a walk around the summit through misty clouds and whipping wind with the hundreds of others who had come out in hopes of seeing the sun rise from ocean to sky. Though there was no spectacular sun display, on the drive I did spy a family of deer – a buck with a full set of antlers and his posse peering at me through the forest.

Our bags are packed and early tomorrow we will be on our way home to Connecticut. First will be a stop at Sammy’s now favorite Maine spot: Little Long Pond where she can run free, off-leash bounding through this little piece of doggy heaven where there’s forest and water and mud and lots of other dog butts to sniff hello at.

Happy explorers.

To break up the 8-hour trip, we’ll stop half-way to reminisce around the old stomping grounds of my (and Craig’s honorary) alma mater: the University of New Hampshire in Durham. Kittery, ME and neighboring Porstmouth, NH are on the itinerary.

This summer getaway has been no less than perfect, a far cry from where we were last summer. What’s even more wonderful is that we’re eager to return home to a place that we love just as much and to the people that we miss. What a fortunate situation to be in. We’ve been humbled by the beauty, relaxed by the ocean air, and sated by all the exploration.

Monday brings us back to New York City for another SGN-35 infusion. I’m not exactly looking forward to that, but if it’s that drug that is allowing me to be this active and making me feel this amazing then it’s worth the few days of crumminess it will cause.

To balance the treatment trip, Craig and I are both looking forward to delivering the heaping amounts of donated goods we collected from our generous community of loved ones into the hands of those who need them at American Cancer Society’s Hope Lodge NYC – last year’s summer vacation spot. 

Our "Downtown Dog Friendly" apartment on the second floor of the Acadia Veterinary Hospital.  Random, but ideal!             

Looking back from Bar Island to downtown Bar Harbor across the sandbar. 

“Live in the sunshine. Swim the sea. Drink the wild air.” 

– Ralph Waldo Emerson

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.

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.

Chemoey

I’m feeling rather “chemoey” today. That’s probably because I had my third infusion of SGN-35 chemotherapy at Sloan yesterday. So, for today, and probably at least another day, I’ll feel rather blah.

When I say “chemoey” it means lethargic, achy, distracted, pain in my tumor sites, cranky, bleary-eyed, exhausted, and weak. I’m a real crowd pleaser. My side effects seem a little worse this time around, and I’m wondering if there might be a cumulative effect. Even so, how I feel right now is nothing compared to how much other drugs have wrecked me, so I catch myself before I start complaining. I just need to rest and ride this initial body shock wave.

Tête-à-Tête-à-Tête

My Sloan-Kettering peeps: Dr. Sauter's nurse, Heather,
Dr. Moskowitz, me, and Dr. Sauter - the dream team. 

I have been home and feverless since last Thursday when I was discharged from the hospital. We figured out what the cause wasn’t, but not really what the cause was. But I’m feeling better and that’s all that really matters. I was ballooned up with almost three days worth of heavy-duty IV antibiotics, IV steroids and lots of IV fluid in hopes of flushing any kind of infection out. No bacteria grew in my blood cultures. My chest and lungs are clear. There is nothing out of the ordinary in my blood work, except for that incredibly high sed rate, indicating high volumes of inflammation in my body.

I got the sign off by the medical, oncology and infectious disease teams that were overseeing my inpatient care and was sent home with instructions to call if chills and fevers again broke in. Despite trying to get out of my previously scheduled appointment, my doctors at Sloan really wanted to see me in New York City on Friday. I was desperately tired on Thursday after finally getting home and couldn’t even fathom a trip to the city, but they assured me that they could see me at whatever time I could get there. They are ultimately the ones who I’ll be working with to decide my next steps – and the ones who watch me so closely and frequently, so I knew that in the end it’d be worth the trek for them to inspect me and weigh in on what might be happening.

My parents took the day off of work and my dad drove us into the city so that I could catch up on all the lost sleep coming off of my hospital stay. I didn’t really sleep, though. I was more cranky and delusional, kind of like when I used to ride in the back seat as a toddler I imagine. We sat in a lot of traffic, which only made me angrier. But we got there, as we always do. I was too impatient to wait to park the car so jumped out on York Ave and made my way into the hospital and up to the physician suites grumbling.

It Is Not My Time

I know that many people are out there who have been rooting for me and thinking about me these past couple of days so wanted to write a very brief update. I so much appreciate your support. More than I can ever express.

Unfortunately, I did not get the news that I was hoping for. Yesterday's PET Scan revealed that the cancer is no longer shrinking. In fact, it is growing, primarily in my chest and in several bones. The cancer has mutated itself yet again so that it is now resistant to the SGN-35 chemotherapy. It is fierce and intelligent.

I am thoroughly disappointed, very sad and exhausted. Though it is very unwelcome news, it does not come as a complete shock as I really had not been feeling well. I deeply feared that the cancer was again encroaching as much as I visualized otherwise. It is very difficult to take these blows. However, I have by no means lost hope, nor fight.

I cannot enter into the allogeneic transplant procedure while the Hodgkin's Disease is actively on the attack. In no pleasant terms, I would not make it through it. I need to be very close to remission with obvious signs that the cancer has surrendered. We just have not found the drug that will do that yet, but there are more options.

We are home now and Craig and I will head back to Sloan tomorrow evening with plans to see my lymphoma specialist on early Thursday morning. She has thoughts on a new clinical trial that just opened there with yet another promising experimental drug. Craig described it well today saying that we have a big locked box before us and a full key ring in our hands. We just need to find out which key will open that lock. One of them will, we just haven't tried it yet.

I have found this Mumford & Sons song to be a wildly appropriate expression of what I am feeling. I will not choke on this unwanted noose around my neck.

The Cave:

"So make your siren's call

And sing all you want

I will not hear what you have to say

Cause I need freedom now

And I need to know how

To live my life as it's meant to be

And I will hold on hope

And I won't let you choke

On the noose around your neck

And I'll find strength in pain

And I will change my ways

I'll know my name as it's called again"

A Sharp Deflation

Things are pretty tough right now. I believe that I used up all of my energy in the first two weeks of SGN-35 recovery. Now that I'm in the third week I'm getting a very rude and sudden slap in face from the drug. And here I thought we were friends. But I must say, I took full advantage of the days when I wasn't feeling its effects and that was wonderful.

Craig and I had a fantastic trip down to the Virginia/D.C. area last week spending time with my college roomate, Frankie, and her husband Steve, and Craig's cousins Kim and Brian who just recently settled there. We explored areas of the D.C. suburbs that we'd never seen (Old Town, VA and National Harbor, MD), vegged with homecooked meals and movies, enjoyed a Friday night adventure to Frank and Steve's unreal grocery store, Wegman's, met their cats (pictured in sweaters below), sang our hearts out at an uber fun dueling piano bar, and perused the United States Botanic Garden, Washington Mall and National Gallery of Art sculpture garden.

Literally the day after we returned, Tuesday, the sacks of potatoes starting falling from the sky and smashing me down. The fatigue is tremendous. For the past several days I have been achingly tired, but unable to sleep. My sleep patterns are all over the place. My eyes are constantly burning and sometimes it's just hard for me to keep my head upright. Even the "siesta" idea is not working. Naps have been very difficult.

I slept until 11 a.m. on Sunday. This has not happened since college. I felt Craig come up and check on me several times, putting a hand on my forehead testing for fevers. I had been up the night before at 1 a.m., 4 a.m., 8 a.m. ... and as much as I don't want to admit it, this is even with Ambien sleep aid. And when I do "awaken" it takes me a tremendous amount of effort to get my bearings and to wake my creaky body up. But this Sunday, when I did roll out Craig had a warm fruit crisp prepared, the kitchen cleaned and the dishes put away. So amazing. It really helped me to start the day with a big smile and not let the fear and aches get the best of me. Sammy helps too. She has been extra cuddly and cute. We are very tightly hitched. She nuzzles with me as I get out of bed every morning and she follows me around faithfully as I do my routines. She's always right next to me copying my downward facing dog if I'm doing yoga or sitting patiently in our closet while I put clothes away. I do envy how easily she can fall asleep in the craziest positions and before long be twitching and grunting as she falls heavily into dreams about squirrel and Frisbee chasing.

Coupled with this fatigue are the body aches. Someone may have well clocked me with a sawed-off shotgun to the mid-back leaving it constantly pulsating. It's like my back muscles are welded too tightly to my spine causing them to be tremendously taunt. Just a simple self-hug, crossing my arms across my chest, reveals the stiff pull. And my hips? No they don't lie. They are angry and the bearers of an incredible amount of tightness and tension. Every single time I stand up after sitting for a while, I stretch ever so slightly and they make an audible pop like rubber bands snapping. The hip openers section on my Rodney Yee yoga DVD has been playing quite frequently.

I suppose this is how I felt during the final week of my last infusion recovery. I do remember being dreadfully tired and waiting for my PET Scan results and was so surprised to hear that the drug is working so well. This is what I hope continues to be the case. All of the work the SGN-35 is doing against those cancerous cells is causing quite a ruckus – especially in my chest where I've been experiencing a lot of fullness and have been coughing and gagging as if my body is trying to eject something. I deeply, deeply pray that this is because there is so much cancer bombing, not cancer growing.

On Wednesday night I'll head back to NYC with my mother and sister to spend the night at Miracle House then into the hospital for 8:30 a.m. where I'll get SGN-35 infusion 4 (hopefully my last!) and catch up with my transplant doctor. Obviously this causes me a tremendous amount of anxiety (which could be another reason why my chest is exploding and my body is so drained). I'd put the transplant out of sight, out of mind since we couldn't go through with it back in September. Now here it is, suddenly back in focus, and there is so much to mull over: good, bad, and real ugly. I have a feeling this is all going to be barreling at me real fast.

SGN-35 Treatment 3

Things have been all quiet on the cancer front. Quiet in the sense that there have been no spiked fevers, no ER visits, no scary symptom onsets, no shortness of breath, no loss of feeling in my limbs. I've been a No Drama Mama. In fact, I've been incredibly busy taking advantage of this "feeling good" time. I know that it will be short lived so I am sucking the marrow out of every minute of it.

The sun has been shining lately and the gutters and roof corners of our home are no longer jammed with thick beds of ice. Though I admit they were foreboding, I do miss the massive icicles - some literally six inches wide and five feet long that hung from the eaves. Hopefully Craig won't have to balance on the roof with a long shovel anymore or attack the real nasty stuff with his hammer and ski goggle eye protection. The path to our front door has actually melted so much that it's revealed the yellow, straw-like grass that had been gasping for air underneath it for all of these months. Sure, the path is flanked by snowbanks that are still the height of three, Sammys stacked atop each other, but there is a hint of spring nonetheless. Earlier this week it was 54 degrees ... such a drastic change from the below zero temps we'd been feeling. Sammy and I hit our trail for a snow shoe and on the way back down the hill I had stripped down to just a sweatshirt. I can't remember the last time I had dared to let more than a sliver of face be exposed to the painfully cold air. It was glorious here in Connecticut, and apparently will be so for the next few days. It's a good time to be feeling good.

This relative "warmth" was only a pipe dream last Thursday when Craig and I drove down to New York City for my third infusion of SGN-35. The brief transfer time from warm cab to hospital entrance was enough to shrivel our lungs and frighten our arm hairs even underneath their protective layers of fleece and thermal. It was another early appointment so the morning sun hadn't yet had its chance to enter the temperature battle, though it didn't have a fighting chance anyway.

After a vitals check and a finger prick to analyze my Complete Blood Count (CBC), Craig and I got right in to see Dr. Moskowitz. It was exciting to celebrate with her and my nurse, Brynn, in person about the good news that my PET Scan showed. She explained that in the terms laid out by other SGN-35 clinical trial studies, I would already be considered as having an objective response and are that we are now working our way toward a complete response with at least one more (a fourth) injection of the drug.

Everyone involved has been so pleased with how this drug has truly been able to target and blast the diseased cells within me. I myself am pretty psyched out of my mind about it. And now I know why my body has collapsed with tiredness at certain times of day. There's a lot going on in there. The drug has worked so well that it's getting very close to FDA approval so that it can be in the hands of many more needing and deserving refractory HL patients. It now even has its official drug name on the IV bag: brentuximab vedotin. It sounds just as menacing as the rest of those villainous chemotherapy names (vinblastine, bleomycin, decarbazine ... .), so I'll continue to refer to it as SGN-35, it's much more fitting in my mind.

I had brought along yet another sputum sample of those juicy little organs I've been blowing out, coughing up and gagging about. After further analysis of the last treat I brought in to the medical team, it seems that they are not of concern ... just my body clearing out. Unthreatening or not, I did bust Brynn holding it up in the air while it captivated the attention of a group of nurses huddled around my specimen collection bottle in awe that someone could produce that. She laughed when Craig and I came out of the exam room to walk in on the scene and said:

"Isn't it funny, I have my morning coffee in one hand and your sputum cup in my other."

I told her not to mix those up. Craig told her not to mistake the little guy for a banana chip.

The chemo mixing wait wasn't bad as Craig and I killed most of the time at our favorite bagel joint across the street. Best. Cream cheese. Ever. The reduced wait time is a big benefit of 8 a.m. appointments. At that time of day, there hasn't been the opportunity yet for the inevitable wrenches to be thrown into the days of the doctors and nurses which set everything back in the variable, fluid world that is cancer care.

My chemo nurse had a beautiful Irish brogue, which she said has lingered since she left there 17 years ago. She was so kind and very calming. She had just read the book I had in my lap, "The Help," so we swapped commentaries on that and also the Stieg Larsson series.

Once the IV bag of drug began dripping, Craig and I played some mean games of air hockey on the iPad and we perused the menu of a local gourmet prepared foods shop off of which we ordered our Valentine's Day dinner to be picked up the next week. From port accessing to Heparin flush and Band-Aid placement, the process took less than 45 minutes. In fact, it went by so fast and I was so focused on protecting my goal from Craig's puck that I forgot to take a single picture. I have no documentation for the first time in more than 100 chemo infusion sessions. However, it's probably safe to guess that it looked the same as every other one. Me in a chemo recliner next to a pole with a plastic line running from a bag to my chest. The photos are pretty interchangeable.

We left the oncologist's office with a "plan" of next steps (In my writing, the word "plan" will forever be protected by a quotation mark embrace). I will go back to Sloan-Kettering on March 3 at which time I'll check in with my lymphoma specialist Dr. M and get a fourth infusion of SGN-35. I'll then head right over to Dr. Sauter's office. He's my transplant doctor, now coming back into the picture after waiting in the wings watching the drama that's been unfolding and folding again.

The last time I saw Dr. Sauter and the transplant team was this past September - nearly six months ago - when I was one day away from entering the allo transplant protocol and we all discovered that the cancer had again returned. Needless to say, I'm going to need a refresher course and by rule we're going to have to go through all of the pre-transplant testing and logistics again. We'll get that process started on March 3. We'll check another PET Scan around March 17 and if (when!) it shows an all-clear response, we could move into transplant pre-chemo and the subsequent long hospitalization/isolation as early as the following week. Like, woah.

Somewhere during all of that we also bring my sister, my donor, back into the picture and she'll again have to go through all of the bloodwork and bodily function tests. Not to mention the Neupogen shots and the retrieval of her stem cells ... . This comes just as she secured a dream job in the Spring Mountains as a Crew Supervisor for the Nevada Conservation Corps/Great Basin Institute and will be moving to Las Vegas 18 days from today. Let's just say she'll be racking up some frequent flyer miles traveling from East to West Coast and back again. We're repurposing the title "The Sisterhood of the Traveling Pants."

Since my latest infusion I've been feeling relatively well - more than well, I'd say fantastic for being on chemo treatment. I've had some spotty heaviness, numbness and those strange coursing blood feelings in my left side again. I've had a lot of bladder irritation, which involves incredible frequency and little spasms (now forever documented as an SGN-35 side effect that I "discovered"). I've lost all but about six eyelashes - four remain on my right eye, two on my left. And of course, the fatigue is always there. But all of that is a pleasure cruise compared to other chemo regimens.

Even with those symptoms, since last week's infusion, I've gone out to dinner three times; saw my favorite musical, Rent, for the sixth? time courtesy of mi mama; walked in the Cupid's Chase 5K with my childhood best friend, tore up the dance floor at a wedding reception with amazing friends; celebrated my grandmother's 75th birthday; practiced much yoga; remastered the art of napping; snowshoed our ridge line; lunched and learned with a famed and accomplished author; celebrated not only Valentine's Day, but 11 years of dating my husband; and am set for a husband-wife roadtrip to the Washington, DC area tomorrow to spend the weekend with my college roomie and her husband.

I have no complaints and feel so incredibly grateful and fortunate every single day. I'll continue to live and rock hard right up until transplant time when I'll have to tap the brakes for a while. I'll never stop trucking forward, I'll just be navigating heavy traffic for a few weeks, forcing me to roll at a much slower pace.