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.

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.