Sunday, February 27, 2011

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.

Thursday, February 17, 2011

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.

Saturday, February 5, 2011

Asserting Independence

I wanted to travel to New York City for my most recent PET Scan by myself. All by myself. Not because I didn't have a list of people who would take me. Not because I don't enjoy all of their company. Not because I'm unappreciative. I wanted to do it to prove to myself that I could. To prove to myself that I'm still fully functioning and capable.

So, much to the chagrin of my closest caregivers, I asserted my independence like a hormonal teenager. After some push back, all involved thought it best to step back and give up as it was pretty obvious by the sugar coated bombs I had been dropping about this "evil plan" all week that no one was going to convince me otherwise. I think the fact that my travels required a 3:45 a.m. wake-up helped to reduce the insistence that they accompany me.

Travel day was also the morning after a huge ice storm, which had been preceded by another couple of feet of heavy snow. Every branch of every tree was clothed in a thin wrap of ice. Every intersection required me to inch out nearly to the median to see past the 8-foot high snowbanks that overtook every stop and street sign.

By 4:15 a.m. I was on the road. It was the pitch black of winter morning. I had to fast before my scan. Not only no food, but also no coffee. Not even a mint or a stick of gum is allowed. It was probably for everyone's well being that they were not in my company. Morning Karin on an empty stomach is something best avoided and not deserving of description.

Of course my gas tank was 10 miles from being empty – bad planning. This required a fill-up in the frigid cold – the kind that makes your lungs shrivel in fright onto your ribs and your boogies freeze to your nasal walls. All gassed up and on my way, it was only the truck drivers and me huffing down I-91 South. The truckers who insist on driving with shields of snow on their roofs that fly off with no warning like airborne video game obstacles. But I navigated like a seasoned Mario brother.

I hate driving in the dark, nevermind the snow. Plus, I'm not in the driver's seat much these days, so let's just say that the steering wheel had a firm grip and I got a lot of high-beam flashes to the rearview for driving like a granny. But slowly and steadily I made the finish line to hop the 6:15 a.m. train out of New Haven despite a slight unplanned detour around downtown and the hot, scary feeling as I turned further and further up the parking garage only to find less and less parking spaces with way too much snow between them as the clock ticked.

I had to kick it into a fast walk to the ticket machine and an even faster one to the platform but I didn't have to run. I played it cool amid the everyday commuters even though I wanted to rip their Starbucks cups out of their hands, drop to a knee and swig the sweet caffeine while simultaneously taking rabid bites out of their heavily cream cheesed bagels.

The train was packed, packed, packed. Metro North is on a reduced schedule as nearly half of its cars are out of service due to this ridiculous winter weather we've been having. But I didn't care how crowded it was as long as I was on it. Again, I did it by myself ... along with the guy I woke up next to when we lurched into Grand Central. It was now 7:15 a.m. I had caught the sunrise through the dirt smudged train window and the light was quite beautiful reflecting off the ice floats of the Connecticut shoreline. The morning sun also made it feel more appropriate to be somewhere besides my bed.

I was so hungry. So tired. So, so nervous about this scan. But I was doing this by myself. That is what I had wanted. Grand Central had a softness and quietness to it at that time of morning. I caught a cab with ease and began the horn-filled trek to the Upper East Side. I had built in plenty of time for traffic or other unforeseen circumstances, but my cabbie did not share my patience and coolness.

My eyes were half closed and this man's cursing at the stopped garbage truck in front of us just blended into the stagnant cigarette smoke scented air. But suddenly things got way more exciting when the tires belched under me and I look up to realize that we are plowing through a much-too-narrow snowbank opening onto the sidewalk to get around the garbage truck that was blocking the street.

"Woah ... sidewalk." I said. Surprising even myself with how nonchalant I was.

It felt like the last season of 24. A woman was pushing her baby in her stroller alongside us and the sidewalk was lined with at least a half a dozen men bustling in pea coats and scarves. None of them seemed to blink an eye at this bright yellow cab driving on their territory. We traveled at least 100 yards on that sidewalk as there wasn't another opening in the high snowbanks to cut back through. I was now wide awake and leaning into the dirty plastic shield that seperated me and the driver.

He suddenly cut hard to the left using the space dug out for a fire hydrant as a sidewalk exit. The two right wheels rolled over the sandy, salty snowbank. We landed hard then pedal to the metal to blow through the next intersection.

"I like your style," I exclaimed. "Badass."

He doesn't even say anything about what just happened and instead asks me:

"Where you from? Westchester?"

I explain that no, I'm not from Westchester and realized that I must have sounded totally lame. A little white girl saying "badass" like I know anything about what that means. But I think maybe he liked me. Suddenly the conversation turned to the weather, Australia's cyclone, global warming, Al Gore, and how he warned us this was going to happen. I wouldn't have pinned this guy for an environmental activist with an obvious penchant for NPR in a million years. Goes to show me not to judge a book by its cover.

I stepped into Sloan's nuclear medicine department lobby at 8 a.m. for my 8:15 a.m. appointment. I was bleary eyed but beaming. I did it. I don't think the receptionist was impressed with how that pride translated into ultra chipperness. She did her best to muster a tired smile and handed me the requisite clipboard of paperwork. I slunk away to the empty waiting room and was called in five minutes later. This made the early start worth everything. Last scan I waited for 2-and-a-half hours before my name was even called.

The nurses were extra attentive and the seat in the pre-scan cubby hadn't yet been warmed by other patients' bums. I drank the red drink and was injected with the radioactive contrast ... blady blah blah. By now I could run the whole damn process myself. That concoction was certainly tough to get down though having been on an empty stomach since the evening before. I did my best to pace myself as patients have one hour to finish it in, but I did a bad job of it and ended up having to chug at the end right before going in. Somehow I kept it down even though I had to be horizontal for the 20-minute scan duration.

I was put in a different room on a different PET Scan machine than I'd been in before. The ceiling of the room was spraypainted in shimmery silver bursts all over. As I lay on the narrow table and was guided in and out of the tube I couldn't help but think of what an awful and obvious 1990s choice that was. Time for an update. I much prefer the new room that has a beautiful tree scene painted on the ceiling from the perspective that you're lying at its roots looking up at the sun. But this wasn't the time to be picky about artistic decor.

With arms above my head and fingers interlaced I lay still as instructed very grateful that this time I remembered to wear leggings and a sports bra – no metal buttons, no underwire – to save myself from having to endure the test with my pants at my knees and my boobs dangling free.

With every inhale I whispered in my head "ALL" and with every exhale, "CLEAR". "ALL CLEAR" over and over as I imagined my body filled with shooting white light filling every space. Sorry, no room for the gray bulges of cancer.

At the end of the test I dangled my legs over the side to let the blood drain back into them and I was off like a racehorse through the gates. The light at the crosswalk seemed to take ages to turn into that little white outline of a walking man. I could see the big poster picture of a bagel stuffed with all the breakfast delights at the deli on the corner taunting me, my stomach growling for something to balance out the 1,065 ml of sterile water, contrast and raspberry syrup that filled it. Soon enough that bagel sandwich was in my mouth and the heavens opened up.

I'm not sure what traveling a total of seven hours by myself for a 90-minute test proves or means but to me in that moment it was what I needed. I have a little control problem. I know that. I take the reigns when I'm with other people anyway. But my world is spinning out of control sometimes and most things I have no grip or influence on. Reading train schedule boards, finding tracks, hailing cabs are things that are predictable and in my control. So, I'll take it. It's another notch in my belt of something that I can say that I did and that self confidence will help me plow through the next challenges. I can also add a new notch for driving down a sidewalk in a cab.

After the exhaustion of asserting all of that independence though, I realized how much I prefer companionship. I bet that bacon, egg and cheese would have been even more delectable if I had someone to share it with. Same goes for gushing over the cab ride excitement.

But I had to do that for myself. For sure, I was anything but functioning and capable once I got home, especially after having to shovel the heavy, icy snow at the end of our driveway as the plow truck had blocked me out with an impenetrable white fortress.

I'm still recovering from the trip. But once I got back into my house after that whirlwind, all I had to do then was rest and wait until I received the glorious news of yesterday. Not yet all clear, but we're getting very close.

Back to the city on Thursday for treatment number three. Craig will be there by my side for whatever inevitable adventures might await us this time.

Friday, February 4, 2011

This News Calls for Double Dream Hands

Dr. Moskowitz: "We are very pleased with your scan results."

Me: "Really? That's so awesome! This is such great news. I was freaking out all day!"

Me after I hang up phone: "Holy F*%&!!" (after I triple checked that the phone was disconnected). Then I did an Irish jig and nearly fainted.

Report summary:
  • There is a near complete resolution of the active nodes in my chest
  • My spleen is no longer lighting up
  • The area showing uptake in my upper back is resolved
  • All areas of cancer activity in my bone have "decreased nicely"
In short, all of the areas of cancer activity are much reduced if not eliminated completely. The SGN-35 is working! So, so, so, so thrilled and in shock and awe. It's been a rough couple days of scanticipation, which took its toll physically, emotionally and mentally. Now I'm exhausted, but in the good tired smiling way. I'm looking forward to a real, nightmareless sleep tonight.

Happy. Happy. Happy. As happy as this guy: