Mixed Results

No better way to start the day!

My late friend Steve (ugh, “late” sounds so formal and awkward). Try again: My very good friend, Steve, that died from complications from this f’in disease and that I miss tremendously every day, once told me that at some point, news just becomes news.

News is what I got yesterday after having my first PET Scan to assess the effectiveness of this Bendamustine/Brentuximab Vedotin clinical trial. It’s not necessarily really good. It’s not necessarily really bad. It’s just news that I now have to deal with. This news directly affects my life, so I kind of have to pay attention, as little as I want to pick up and recalculate.

I am coming off of this trial. It is not working for me. Another treatment that just couldn’t get the job done. It’s getting frustrating and exhausting for sure. I desperately miss stability.

Wednesday was a long, long day. My mom started at 5 a.m., driving to pick me up at 6:45 a.m. to start the trek into the city. That’s a devoted mama. I had to have my scan at the hospital way uptown in the Bronx. It’s very old hat, but it’s still not fun. I had to get both a PET and a CT Scan to be able to best analyze both my bones and my lymph nodes, respectively. That means I had to lay in two machines, drink a full bottle of “banana smoothie”-flavored barium sulfate, be injected with the PET Scan radioactive diodes, and then be injected with contrast for the CT Scan, which goes in while you’re in the machine and makes your whole body so hot that you feel as if you’ve wet your pants. This is all after not eating since a midnight snack the night before.

We then had to travel to midtown Manhattan where my doctor’s clinic is and we would go over the results and formulate a plan. Waiting for those types of appointments to start, especially, is hell. Waiting for 2.5 hours is even hotter hell.

Breathing Once Again

Taking in the majesty of the Pacific.

I realize I’ve been missing from the blog world for a while, but to write, I need time, energy and focus and I have not had an ounce of any of those for the past two weeks. But I've gotten those things back and the stories of what I've been up to will follow. 

Though I've been remiss of those things, what I did have was a bout with pneumonia, a pleural effusion that made it very hard to breathe, a week straight of very high temperatures, soaking night sweats, and teeth chattering chills, several bags of blood, and another round of chemotherapy thrown in. I spent an overnight at Columbia Presbyterian in the Bronx and then another five-night hospital stint at Hartford Hospital home in Connecticut after making an Emergency Room entrance. I also had some life-affirming experiences at the San Francisco Writer’s Conference and a fantastic time exploring the City by the Bay and the California Coast.

Yesterday was the first day I was home since I left for Cali on Feb 13. After a week of vacation, Craig and I separated and I took a red eye right to NYC to clinic where my mom met me and my medical team could examine me and infuse my next treatment immediately in case this was Hodgkin gone wild. Today was the first day that I’ve felt like I’m on the other side of all of these infections. It feels good. But it has not been an easy go. These weeks have taken a real tough toll. We didn’t know what was going on for a while there, and that is a scary feeling. After much examination, imaging, blood tests, heart tests, monitoring and IV antibiotics all over the place, it was ultimately determined that I had a community acquired pneumonia in my left lung (damn sick people on planes) and developed a lot of fluid in the lining around that same lung which grew as an inflammatory and protective measure.

Regaining Stability

When there are times as a grown woman that I have to be as dependent as a newborn, I latch onto the times that I can be independent with vigor. Sometimes this causes a riff between those who want to take care of me and me, but I have always enjoyed spending time with myself and the feeling of accomplishment of doing something on my own. When I can be functioning by myself again is when I know that I’m past the peak of whatever current hurdle I’m jumping. I’ve grown up and am much better at asking for help when things get messy and unmanageable, and I’m also better at asking for no help when I know I’m perfectly fine – like a kid who doesn’t want his mom to catch him at the bottom of the slide anymore.

My pain was under control as of Tuesday evening with the placement of a pain patch on my belly. It delivers very low dose, continuous medication to manage the bone pain I’m experiencing in my pelvis and will keep experiencing until the initial tumor blow-up process is complete. It cuts the pain completely, without leaving me overly drowsy and loopy and eliminates the up and downs of oral medications and the nausea they leave me with. For the first time, ever, I have an actual pain management plan. I’m grateful I’ve made it this far without having to have one, but now that I do, am grateful that I’m with a team that has done so much to ensure my comfort.

My patch and I took the train in on our own, eliminating the need to do any driving by taking Amtrak from a more local station. The seats were comfortable, the train car was warm, and I was able to work on some writing with power and WiFi access. I dressed up in business casual clothes as I felt in a business casual mood, not a cancer patient mood.

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. 

Skeletons in the Closet

blog.1800gotjunk.com

We all have one of those closets that you need to kick its door with force to be able to shut it closed, as there is so much junk behind its doors. However, when it’s shut no one knows the difference nor suspects the mounds of hoarded crap on the inside.

Earlier this week, it was as if the door on mine busted off its hinges and all the junk just couldn’t be contained. Figurative glass vases, decks of cards, untouched workout equipment, old coat upon coat, dusty pillar candles, all came flying at my head. I felt as if I were buried in bags filled with more paper bags, reams of tissue paper, rolls of wrapping paper, and fabric scraps that I might use some day, drowning in the very things that that closet door usually keeps safely distant from me.

However, instead of those inanimate objects, it was every Hodgkin Lymphoma B symptom I have experienced in 3-and-a-half years of living with the disease. Things spiraled even more out of control after Tuesday. My mom came over to drive me to get my Cortisol level checked and to spend the day caring for me as I could barely see past the bridge of my own nose, woozy with pain and weakness.

Throughout the day and night, everything came flying at me: incredible pain in my bones and aches in my body tissues; shaking chills; insatiable itchiness on my lower legs and chest, sweats that soaked so bad I had to change my clothes four times throughout the night; swollen, palpable lymph nodes; nausea; a good vomit session as soon as Craig pulled in from work to take the caregiver baton; lack of appetite; fevers reaching nearly 103 degrees; weakness beyond belief. I was a hot, hot mess.

I was in touch with my nurses at Columbia throughout the day, filling them in on the downward spiral. It got to be 8:30 Wednesday night and I was so fevery, I was crying to Craig and contemplating a trip to the Emergency Room. We were weighing the options of what to do.

Then my cell phone rang, and it was Dr. O himself, calling me from California to tell me he heard about everything going on and to talk me through a new thought process. That’s the sign of a truly good doctor. He wasn’t even in his office, but took the time to call me to figure this all out and even give me his cell phone number to call or text him if anything further came up after our conversation. He immediately made me feel better as his suggestions matched seamlessly with the layman’s medical thought process I had been having also.

He didn’t even want to wait for the Cortisol level return. He knew instinctively that this wasn’t an adrenal failure, but that instead the anti-inflammatory powers of the Prednisone – even at such a small dose – had been holding back all of the Hodgkin symptoms I was now experiencing. The Prednisone had been my closet door and when that busted open, out came all the realities of what was happening inside my body. He was right. 24 hours later, my Cortisol level read at 12.4 – actually a little higher than normal.

He told me to take 10mg of Prednisone that night. Within an hour, it was as if that door was shut again and all the crashing, clanking, and screaming stopped. All was quiet, balanced and stable again. It was incredible. He told me to continue to drink fluids like a horse, which I did, and continue to do. We conceded that the NAE Inhibitor trial I was planning to go on was not right for me at this time, despite all of the set-up we’d already done to work toward it. My disease is in too much of a flare right now to risk going onto such a novel therapy with very little data behind it. I need something more tried and true at this moment.

We are instead going with a clinical trial which Dr. O had discussed with me when we first learned from my PET Scan that the Revlimid had stopped working. At the time, he had wanted to keep it “in his back pocket” because we knew that it was something that would very likely work and that we should hold onto it until I absolutely need it and try these other novel therapies until then. I can’t be burning my bridges until necessary. Options are few and far between. Well, now I need it. We need to melt this current disease.

Next week I’ll be starting up on a trial at Columbia that combines Brentuximab Vendotin (SGN-35) and Bendamustine chemotherapy. I have had both of these drugs in the past, but never in combination, and never at these lower doses. Apparently, his research team has had good luck with using them together synergistically, having put several people into remission. He hopes that that will happen for me as well. We don’t know how long a remission would last, but a remission will give us options to decide the next step and as he says “turn this into a manageable chronic disease.” I feel completely comfortable with this plan.

Monday brings me back to the city for yet another set of pre-tests and consent forms to sign, then I’ll start treatment as early as Wednesday or Thursday. Time to reset everything and refocus on this new “plan”. I’m just so incredibly grateful for that that damn closet door is again shut tight. That shit was scary in there. No more pain. No more fevers. No more vomiting. Just back to my normal aches and fatigue, which I am now oddly thankful for in comparison.  

Stunned and Stupefied

It's been a tumultuous past few days to say the least. I'm still grappling with the fact that the cancer is still there and even more so that it's rearing its head in new places ... the little bastard. However, the shock and disappointment has turned into a sharper focus and an even stiffer determination to rid my body of it. The Bendamustine just isn't the drug to do it. We're running pretty low on options, but there is still an option. What I really need is the immunotherapy that the allogeneic stem cell transplant will provide. However, I can't get that until I'm in remission. This is currently a challenge.

This past Wednesday was a NYC family trip a la the Griswolds minus my little brother who is surely studying hard at school. Despite the chilling cold, my parents, sister and I spent the morning walking around the holiday market and watching the ice skaters at Bryant Park. It was beautiful but also mildly torturous as snaking around the artist booths were the incredible smells of kettle corn, hot cocoa, crepes and sausage dogs. Normally this would be wondrous, but I was on a six-hour fast before my PET Scan. A water-only diet equals sheer torture.

We then walked along 5th Ave. admiring the holiday windows down to Rockefellar where we got to see the lights on the big tree and it was there that I left my family to further explore while I hopped in a cab to Sloan-Kettering. There was no need for everyone to sit in the waiting room with me. And, it was a good thing they didn't as the nuclear medicine center was running nearly two hours late. It certainly gave me plenty of time to thaw from the raw cold we had been in.

I drank the red concoction yet again but it actually tasted much better. The nurse alerted me that they no longer use Crystal Light, but instead, a raspberry flavor mixture from Starbucks. Ah, luxury. They started an IV in my arm and injected the radioactive fluid that would illuminate my innards and there I sat reading my book for an hour until it was time to head into the tunnel.

It's wildly uncomfortable in there and for some reason I had more anxiety than I've ever had. I laid on the narrow table and they gave me a blanket to cover myself while I shimmied my pants down past my knees so that my metallic zipper and buttons wouldn't affect things. This is normal protocol, but on that day, I was also wearing a set of long underwear as it was a high of 29 degrees. Pulling all of these layers down to the tops of my fuzzy winter boots while on my back without exposing myself to the tech was an acrobatic feat.

Finally all was settled and I lay with my arms above my head. Thirty minutes without moving. The CT Scan came first where they pushed me in and out of the tube a couple of times to snap photos then injected dye into my IV, which sends an instant flush of heat through the body. It made me feel like I had just wet myself, which I very well could have after drinking all of that fluid. But I didn't. It's a normal reaction.

Normally I just fall asleep once the machine starts whirring for the PET Scan portion. But this time, I wanted out. For some reason, the tube seemed smaller than ever, the velcro straps tighter than ever around my legs, and I wanted to just scream. Suddenly I had to itch everything and had a frog in my throat that I couldn't clear. All I could do was think of Ze Frank's chillout song reprise: "Hey, you're okay. You'll be fine. Just breathe." over and over and over until the narrow table pulled me out of the tube for the final time. Maybe deep inside I knew that in fact I wasn't okay.

I felt even worse afterward. All of the dye and contrast and such made me nauseous on an empty stomach and I just wanted to meet back up with my family. It was now 5:30 p.m. Dark. Freezing, freezing cold. And worst of all, shift change time for cabbies. No one wants to get someone in their car for too long of a trip before it's their time to go home. Finally, I was able to hail one and huddled into its warmth and the kindness of the driver as we remarked about the 99 cent pizza slice joint and how their business plan could possibly work.

I found my family back at Grand Central, which was a bustling mania of commuters. I couldn't even speak to them before I shoved a few bites of mango salsa chicken burrito down my throat. I parked it next to a homeless man and his big garbage bag as he rocked, talked and sang to himself. I did not care in the least I was so hungry and so tired. The train ride then car ride home was peaceful and full of laughter as I merged in and out of fits of sleep and kookiness.

Not so peaceful was my back. It had been in undulating pain in seething spurts for about a week, aggravated even more by the long periods of sitting and stillness. I had taken a sudden turn for the worse after my ultra positive feelings of just a week prior. In the evening especially I had developed a pain at the top of my left leg that would shoot and pulse all the way down the length of it and leave me helpless with no stretch that would touch it. The pain woke me up that night at my parents' house as it had for several nights before. To add insult to injury, I've been sporting a mirror pain on my right upper back for about three weeks now. Again, not constant, but when it comes, it lets you know it's there.

Thursday was spent nursing this and waiting in agony for the doctor to call with the scan results. It's not like that's a difficult thing at all ... . It's not like I took my cell phone into the bathroom with me every time. It's not like I wrapped it up in a towel and balanced it on the tub edge when I just couldn't put off taking a shower any longer. It's not like I walked around with it in my back pocket all day and checked the screen every 20 minutes. Oh wait, yes I did.

It wasn't until nearly 7 p.m. that I got the call. A call I probably could have done without. At that point I knew that it was going to be bad. In my vast experience when I don't hear results until very late in the day that means the doctor has been conferring with his/her colleagues, looking it over thoroughly, maybe grappling with how to break the news. I ran up to Craig's workshop above the garage where he was doing some woodwork and put the phone on speaker so that we could each hear what Dr. Moskowitz had to say. It was freezing up there but it didn't matter because as soon as she said that the scans looked "puzzling," my whole body went numb.

Craig diligently took notes on a pink lined Post-It note while I mumbled back "uh huhs" and "hmmms" back to her. After some beating around the bush, the report was that previously involved lymph nodes had shrunk some in size, but were still showing Hodgkin's activity. In addition, some new hot spots appeared on my vertebrate and left rib. This was stunning and nauseating to hear.

When I told her about the back pain – something I probably should have reported earlier but didn't want to deal with – she was highly concerned. She wanted to make sure that the cancer lighting up on my vertebrate was not compressing any nerves. If it was, I could be left with permanent weakness and irreversible damage to my body. It was decided that I would go back to Sloan the next morning as early as possible and enter through their Urgent Care/Emergency area where I would need to get an urgent MRI. If it showed that nerve damage was occurring, immediate hospital admission and radiation to those areas would be needed. Dr. Moskowitz apologized in advance that it wouldn't be a fast nor pleasant experience, but that it was the quickest way to get immediate scan admission. Again, more nausea and bewilderment.

After I hung up the phone and put away my "professional" brave voice I lost it. There was a lot of crying, a lot of F-bombs thrown. Some kicking and doubling over. Craig even reverted to showing me pictures of puppies but even that couldn't console me. He was also at a loss and visibly upset. I couldn't even function. I just curled up in the corner of the couch and turned on the TV. To my delight, Charlie Brown Christmas was on and I lost myself in the story's innocence.

Seemingly unconsciously Craig and I packed a suitcase in anticipation for a possible long hospital stay and were on the road back to the city, this time via car, at 5:30 a.m. We arrived at Urgent Care by 8:30 a.m. so the craziness had not yet set in. My nurse was so incredibly kind and kept reporting back to me on what the status of things were. We were moved from a curtained room with a bed to a curtained room (or maybe more appropriately, closet) with a recliner. There was a TV and we had the laptop on which we watched movies and stupid online videos. After two hours I saw the ER doctor. After four hours I was transferred via wheelchair to the MRI area of the hospital.

Somehow previous to this, I had managed to avoid the need for an MRI scan (Magnetic Resonance Imaging). It uses a giant magnetic field to align the magnetization of atoms in the body and reveal pictures of detailed internal structures. I was vaguely prepared for how narrow and deep the machine's tunnel would be, but I was not prepared for how loud it was. I had to remove all metal and was scanned with a wand like at the airport. They gave me ear plugs to shove in and once again I had to lay on the narrow shelf. My head was between two foam blocks and they stuck even more foam between those and my temples to make it very firm. I was strapped down, given a pressure bulb to squeeze if I needed help and told to lie very, very still ... no deep breaths, no shallow breaths. When they pulled me out to put in the contrast midway through, I was told to remember not to move then either.

I felt like a Chilean miner being pulled out from underground in that narrow capsule. Afterward, I fact checked my feelings. The MRI machine tube has just a 24-inch diameter. The miner's escape capsule had an inside diameter of 21 inches. My comparison wasn't that far off. But if they could do it then I could do it, squeezed in there with eggshell colored plastic surrounding my entire body just 8 inches or so from my face. It took everything in me to not freak the F out. And I am a petite person with no claustrophobic tendencies. It felt like being buried alive.

The sweet accompaniment to it all was the pounding of jackhammers all around me in a jarring and inconsistent symphony of sound. The ear plugs were a joke. The magnets were so loud as they spun and moved and I could actually feel the magnetic force field enveloping my body. It was one of the longest 40 minute snippets of my life. And I had thought first period high school pre-calc was bad.

But I made it through ... snowflake print Johnny over skinny jeans and all. As is everything else, it was only temporary. My biggest concentration during it was remaining as still as I possibly could for fear of messing up the picture and having to repeat the scan. I was wheeled back down by a sweet, sweet man named Richard to the pod closet in which Craig was waiting.

Another two hours and the doctor came to tell me that the radiologists had read the results and that things looked clear. There was no immediate danger to any of my nerves. It's likely that the pain I've been experiencing is from shifting disks in my back pinching nerves intermittently. It seemed that the doctor and the nurse were just as excited as we were and were eager to expedite our discharge.

Once again, I hadn't been able to eat and Craig had only picked at the breakfast box we had been given. We both randomly wanted Pizzeria Uno so badly and for some reason thought that getting off a mall exit off of I-684 on the Friday night before Christmas was a good idea. We sat in gridlock adding another hour to our ride but the deep dish pie and Caesar salad was so worth it. We slept very hard Friday night when we finally made it back home.

While all of this has been happening, my oncologist has been writing an individual study specific to my case in the hopes of obtaining a yet-to-be FDA approved drug on a compassionate use basis. The drug is called SGN-35. It's a targeted missile drug, unlike normal chemotherapy and different in its makeup than anything I've ever had before. It actually seeks out and destroys the type of cells known to exist in Hodgkin's rather than just arbitrarily attacking all fast-growing cells in the body.

SGN-35 is a hot ticket drug that was all the rage at this year's American Society of Hematologists conference and in Scientific American magazine. Dr. Dailey, Dr. Cooper, and all the doctors at Sloan have mentioned it to me as the next step should the Bendamustine prove ineffective – which apparently it has.

The drug is a huge breakthrough that's very close to being a mainstream treatment for Hodgkin's patients. However, it's not there yet and there are no open clinical trials anywhere in the nation that I qualify for. The hope now is that the pharmaceutical company that possesses it will have compassion for my situation and release it into the hands of my doctors. Right now, Dr. Moskowitz is diligently making my case. And here I sit doing what I do best ... waiting.

On Thursday, the day before Christmas Eve, it's back down to NYC to find out the verdict and hash out a "plan" (a word I use only in the loosest sense possible).

Post-Scan Update

I had my much anticipated PET and CT Scans yesterday. Last night around 8pm, I got a call from my Sloan oncologist with the results. The later and later it got to be in the evening, the more I knew that it wasn't good news. My scan was not clear.

The areas that showed as hot spots (denoting likely cancer activity) in my scan two months ago have shrunk some, but are still lighting up with activity. What's more concerning is that there are some new hot spots on the vertebrate of my spine and on my left rib.

I've been experiencing tremendous pain in my very upper left leg with shooting pains all the way down my leg on and off for about five days now. I also have a lot of pain and inflammation in my upper right back, which has lasted a while.

Because of these symptoms and the hot spots on the scan, my doctor ordered an emergency MRI so that we can immediately assess what is going on. So, Craig and I drove back to Sloan today and now I am here in the urgent care center waiting to get the scan done. The MRI test will be able to more accurately reveal what is happening and will be more definitive as to whether it is cancer.

If in fact it is cancerous lymph nodes pressing on nerves, I'll be admitted today and we'll start radiation to those spots immediately as permanent weakness and irreparable damage can be caused if we let it grow. If it is some fluke, then hopefully I can go home today.

Whatever it is, I'll find out by later this afternoon. I'm deeply disappointed that the Bendamustine isn't working as expected. I'm very tired and very anxious, but we're keeping entertained and holding onto hope.

Bendamustine Cycle 2 Recovery

It's been a week-and-a-half since treatment and I'd say that things have gone relatively smoothly. I have been functioning much better than I did at this point after the first cycle. That could be for a lot of reasons: the dose was reduced, I had seven weeks to recover, there aren't the cancer symptoms to deal with, and I know what to expect.

Thanksgiving was a bit of a blur. It was so nice to be surrounded by family, but it felt like I was wearing beer goggles and moving in slow motion. I don't really remember much of my conversations. I was very woozy and very tired and incredibly chilled the entire day despite wearing two long sleeves under my sweater dress.

However, I picked at more food than I expected to and made it to two out of the three family Thanksgivings that we were scheduled to hit up. Albeit, I did a lot of napping in the couch corner wrapped in a borrowed Tinkerbell fleece at gathering number 2 at my Aunt and Uncle's house. Despite what the embroidery on the pink fleece says, I was certainly not feeling "Flirty." Too chemo dazed to be behind the wheel, my brother drove me and my car to my parent's house where I slept on the recliner, then the couch, then their bed under many blankets with the heat blasting, until Craig returned from Thanksgiving number 3 to pick me up and take me home. I'm lucky to have so many escorts.

The next evening was my 10-year high school reunion. I had been looking forward to it for months and had promised myself that if I was in the state I was going to be there. We had a great graduating class full of many fun, intelligent, caring people and I wanted to be a part of the celebration. I slept the entire day in preparation and somehow got myself dressed up and there. It was so fun, as always, to spend time with all of my close friends and a trip to catch up with people I haven't seen in forever. I had to sit down – a lot – and every tissue in my body was achey and wildly sensitive to the touch. I felt like a walking bruise but I balanced and made the rounds – on heeled boots no less. I was very proud and very happy that I made it there and then equally as happy to be back home and in bed.

Every day since has been an improvement, but it wasn't until yesterday that the body tissue aches and bone pain subsided. The tissue aches are something unique to the Bendamustine for me. It's like my tissues are filled with fluid and therefore very bloated, swollen and inflamed resulting in a lot of tenderness. No bear hugs were allowed.

The Neulasta shot also really did me in this time. It takes a lot more work for my damaged bone marrow to create new blood cells these days and I could physically feel how hard it was working. My bones, especially in my upper back and hips, were constantly pulsing in pain from the inside out. At night especially all I could do was find a position that was minutely comfortable and not shift from it. To move my bones was very painful. The aches have woken me up from sleep several times this week and that's tough to take when sleep is so hard to come by.

Each morning when I wake up I feel as if I'd stepped in as a stunt double for one of the Bourne films and was dropped from a high rise building window to land flat on my back on a rusty dumpster lid. The hour of 7:30 to 8:30 a.m. is usually spent laying there trying to get my bearings and get my strength to get out of bed. The good thing is that each morning the height of the window from which I fall has been reduced. This morning was equivocal to only a slip on the ice.

All that said, it really is an improvement from last time. The bone pain has subsided. The figurative body bruising is gone. The aches are more sporadic and much less intense. Right now all I'm dealing with is red raised bumps on my face and random dry skin patches everywhere – one right on my bottom lip so it looks like I lost a fight. This happened to me last infusion as well. Apparently Bendamustine wrecks havoc on my skin. And then there's the fatigue ... but what's new?

The holidays help for sure. I freakin' love Christmas. I could barely lift my right arm last Sunday, but darn it, we went out and cut down a fresh white spruce and covered her in white lights and mementos. I love, love, love the smell and watching the glow each evening. Saturday we made it to our town's holiday festival and bundled against the cold took in a fantastic fireworks display set to the intense carols of the Trans-Siberian Orchestra. There are lots of holiday parties and outings in our schedules and everything is made better by the Mariah Carey Christmas album.

Mentally, I'm in a very happy place right now. Physically, I'm getting there, one day at a time and am just so, so grateful that I'm still able to yoga, to hike, to breathe in this incredible December air. There is a lot of healing happening every day.

December 15 is the next big milestone: PET Scan day. We'll see if this Bendamustine has been doing its job. The hope is for an all clear, no cancer report. That means on we go to transplant – new year, new immune system. While all of those logistics happen I'll get one more cycle of Bendamustine chemo, currently scheduled for Dec. 23 and Dec. 24: Ho! Ho! Ho! Looks like I'll be putting the beer goggles back on for Christmas.

Bendamustine Cycle 2

It was last Monday at 6:30pm that the (212) area code came through on my phone. New York. Craig and I were cozied on the couch already beginning evening news watching routine. I conceded to the fact that I wouldn’t be getting Bendamustine treatment the next morning at 8am as scheduled. That day my local bloodwork check revealed a platelet count of 65. It had risen only 8 over the last five days. How could they expect it to jump to the required 75 in just a day?

I was wrong. My nurse, Brynn, called and said that the team still wanted me to come to the Sloan clinic the following morning. She said that I would think she was crazy, but that she was passing on the word exactly from Dr. Moskowitz’s mouth.

“We got your bloodwork today and see that it’s still low, but we’re going to try something,” she said. “I’m being for real. Right before you get your finger pricked we want you to jump up and down for 15 seconds.”

I told her that yes, that was random, but that I’d do it for sure; that’d I’d do handstands, cartwheels, jumping jacks, whatever it took to be able to get the treatment that I needed. She explained that some of the oncologists had discovered that getting the heart rate up immediately before the blood is drawn can have an endorphin effect which can spike the platelet results. The act can shake things up and force the cells to multiply – if only temporarily. It had worked for another woman on my study and we were hopeful that it would for me to.

So, we grabbed our now nearly permanently packed bags and were on the 7:57pm train to New York City. We didn’t want to deal with a 4am wakeup the next day and luckily had not yet canceled our Miracle House reservation.

Tuesday morning I pulled on my jumping boots and we made the trek across Manhattan. While waiting for my name to be called, Craig pulled me into a side hallway. Little did I know, he had queued up the Rocky theme and was very serious in his coaching role. “Gonna Fly Now” played through his iPhone and he encouraged me to start bouncing. I did a combination of awkward jumping jacks and aerobic steps all the while knowing patients, doctors, nurses could turn the corner at any moment to find the Richard Simmons worthy scene we were creating. He had me going until I broke a sweat and had to strip down to a t-shirt. I was pumped.

Then we heard my name. I explained to the lab tech that I needed to do a few more jumping jacks while she laid out the needle, gauze and Band-Aid.

“Oh sure; whatever it takes,” she exclaimed excitedly and began to dance and laugh right along with me.

I upped the 15 second recommendation to 1:30 seconds watching the red second hand tick as I flayed about then plopped into the chair for the finger prick. The tech was ready with the needle and vile.

Craig and I waited anxiously under the blinding white lights of the doctor’s exam room.

The door opened slowly and in popped a red faced and beaming Dr. Moskowitz who proclaimed: “Happy Thansgiving! You’re getting treatment!"

We all cheered like goofballs as she read the lab results with the platelet count of 78. Brynn poked in to give a yelp as well. Dr. Moskowitz then revealed to me that had it taken one more day for my platelets to reach 75 I would have had to been pulled off the study. I don’t even want to think about what that would have meant as this is the drug that I need. There are very, very few – if any – other tricks in the bag. I am glad that I didn’t know this tidbit beforehand. That was a very wise omission of info on her part as I had been uneasy enough about being off treatment for seven weeks.

It was so odd to want something so desperately that I knew would leave me hurting so badly. It was a massive relief for all of us. Besides that nagging desire to live, scientifically, the team at Sloan of course wants me on the study so that they can watch me meet success, so that they can prove that this course of treatment works and so that they can help other patients in the future. It’s strange to think of myself in these terms and of course these are not terms ever spoken by my medical team, but I am a rare scientific specimen. I am in a clinical trial for a reason. They need my data. They need to study me. I need to live and I am putting my life in the hands of this medical science. I am more than willing to do whatever it takes and hope that everything that I am going through will make it that much easier for the next person.

The chemo infusion itself went without a hitch. Dr. Moskowitz ordered a slightly reduced dosage, which the study allows for in the second round. The Benadryl they require made me groggy and woozy but the 40 minutes went quickly.

Riding the usual steroid induced high, Craig and I did some exploring in the city’s design district. We spent hours perusing through the visual wonderland that is ABC Carpet and Home taking in floor after floor of creative, artistic interior décor. Every single thing in that place is a conversation piece in and of itself. Then we snacked on rock hard NYC pretzels from a cart and stumbled upon a huge open-air holiday market in Union Square. Under every tent was a different artisan with something mind bending, intriguing and unique to explore.

Suddenly the steroids wore off and the Bendamustine in. My legs started to swell and give out and my head became very heavy. It was time for my prince to escort me “home.” Both chilled and flushed from the long day I burrowed into the bed covers in our Miracle House room to indulge in a much needed before-dinner nap.

We then gathered with a group of nearly 20 other patients and caregivers staying at MH that evening for our biggest group dinner yet. We all ducked out from the cold November air and into the reserved tables at Pom Pom diner. We shared a booth with a fascinating woman from Nebraska who is a calligrapher, an educator and an arts and books lover among many things. We had very much in common, and it was comforting to hear about what she’s learned and experienced through taking care of her ailing father – a retired English professor. There were many others there too. Some knew already that they would remain in the city through the holiday. Others were packing up to make the trek home to their families with plans to come back for their next treatments, procedures, and adventures.

On top of the post-chemo symptoms, a cold had set in and my nose was continually running just as much as I was sneezing. Sleep was hard to come by and my nose had become raw from the continual tissue rubbing. But it was up and at ‘em early again on Thanksgiving Eve for infusion number two. My ever- patient husband waited away the hours with me as my chemo was mixed until I was finally “served.”

The train ride home was packed wall to wall with people, baby strollers, suitcases, and shopping bags. Every seat was taken and even the vestibules were full all the way along the New Haven line. We were fortunate to have gotten to Grand Central early enough to get a seat of our own. It was a beautiful thing to watch the human dynamics. Despite how cramped it was, I witnessed so many people helping to hoist others’ bags on the racks above their heads, giving up seats for the elderly, helping women with strollers to navigate between the cars. It made me smile between sneezes and chemo flush waves to think about who and where they were traveling to and what it would be like when they got there. Would their Thanksgiving table be a Turdukin or a Tofurkey table? How long had it been since they’d seen their families last? Were they looking forward to or dreading the reunions?

Despite how awful I felt and how desperately I wanted to be curled with Sammy on my couch, my chest was filled with a palpable fullness of contentment and astounding gratefulness to have my husband’s shoulder to sleep on and so many more loved ones to look forward to sharing the holiday with.

Supercalafragalisticexpialadoshus

It is something to say when you just don't know what to say, states Mary Poppins. So I am saying: "Supercalafragalisticexpialadoshus." It at once satisfies the craving for an expletive and for utter nonsense. The situation I'm going through is nonsensical. There are no answers and there are no words, so I'm saying this one loud and don't care if I sound precocious.

Turns out that my mom and I enjoyed another mini vaca rather than a treatment ordeal in New York City. This time: a 45-minute drive to my parent's house; a 40-minute drive to the train station; a two hour-15 minute train ride; a 20-minute taxi ride to drop our suitcases at Miracle House and a 35-minute taxi ride across Manhattan to Sloan-Kettering for my appointment – all the while hopeful that my doctor's visit would be followed by chemo treatment.

However, the timing just still wasn't right. A finger prick blood work report revealed that my platelets still hadn't risen high enough to be able to receive another chemo dose. The number needs to be at 75,000. I was at 56,000. My oncologist kept expressing how badly she felt that I made the trek all the way in, but that she had been optimistic even after receiving the blood work report I had gotten locally the day before. I was at a count of 50,000 then, so at least I am on the upswing. She had wanted to see me anyway and I had wanted to see her as well. It was good to check in and talk some things out even though there was no chemo to be had.

The plan is to try again next week. This will now be week 7 of recovery. I'll have my blood work checked locally on Monday and if my bone marrow has done its job over the weekend, I am scheduled for chemo in New York on Tuesday and Wednesday. If my counts haven't hit the mark by Monday, we'll check again Tuesday and aim for chemo Wednesday and Friday. Sloan-Kettering doesn't administer chemo on just two days a year: Thanksgiving and Christmas, so they'll have to get an exception approved for me to go off of study protocol and have a day between treatments if the latter chemo plan is the case. I don't yet know what this will mean for turkey day with our families.

In talking with Dr. Moskowitz, it turns out that I am not alone in this conundrum, that several people on the clinical trial are experiencing the same challenge of slow platelet recoveries. In fact, she said that if they could rewrite the study with a smaller dose of Bendamustine with the data that they now have, they would. All of the 29 people on this study with me have been through many, many therapies, most also had failed autologous transplants so all of us have pretty wary bone marrow. With this said, the plan is to get a reduced dose for the next infusions ... hopefully this will lessen the recovery time at least a bit.

We left Sloan and decided rather than heading back to CT, we'd make the most of our time in the city and spend the night anyway. We did lots of people and bright lights watching in Times Square as we waited in the TKTS discount ticket line and came out with tickets to Mary Poppins on Broadway. After a nap back at Miracle House and a dinner of decadent savory crepes at a French cafe, we settled into the New Amsterdam Theatre for the production.

Mary Poppins was the absolute perfect choice – a total escape into colors, special effects, dance numbers, and fantastical, whimsical wonderfulness. Call me cheesy but I love that over-the-top showmanship only Disney can produce. We were both so in awe of all of the surprises and the amazing imagination behind the show. Rather than thinking about how the cancer has yet another week to grow before getting a chemo whack, instead, I was able to whilst about jumping into a painting and dancing with statues, about tap dancing chimney sweeps that serve as lucky guardian angels, and about the premise that "anything can happen if you let it." I lost my own worries in the music.

After a brisk walk consisting of lots of humming, we slept hard. We joined a group of others from Miracle House for breakfast, one of which was a man in his late fifties facing the premise of a bone marrow transplant to treat his leukemia. His match is his twin brother in India who just suffered a massive heart attack. We spoke a lot about the transplants I've had and what got me through. He was so grateful and told me that he was so scared before, but that now he had hope after seeing me and how well I looked and how upbeat I was. I told him that attitude is everything and that he will get through it, too ... even the bad days. I was only paying forward what others have done for me by sharing their stories. Those Miracle House breakfasts are about so much more than pancakes and eggs. I look forward to seeing him again this week.

We decided on a later train to give us time to geekily wave behind the set of the Today Show, see the big tree being set up in Rockefeller Center, get suckered by the vendors along the touristy streets, marvel at the beauty of St. Patrick's Cathedral and wander from one beckoning retail window scene to another all the way down Fifth Ave to Grand Central.

Cheeks rosied from the November air and calves weary from all the walking, the train ride home was spent nodding in and out of slumber. The track rumbles lulled us to sleep ... a sleep interrupted intermittently by the garbled, incoherent sound of the conductor's voice over the speakers.

Hesitantly Ready

Dare I say it? Tomorrow morning I am scheduled, yet again, to get this long awaited second round of Bendamustine chemotherapy. I am now six weeks past the first treatment ... off treatment two weeks longer than expected. I think it's time to induce me.

In all seriousness, I will go to get my blood count levels checked locally later this afternoon to verify that my platelets have climbed high enough. Last week that was not the case, so I've been working on platelet building all week long. I'm not really sure what that consists of, but it's required a lot of rest, plenty of good food and an incredible amount of patience (not always easy to come by). Let's hope it worked.

If so, it's by train we go back into NYC. This time with my mom as my companion. Two ladies conquering the big city. With the help of the steroids to balance out my Thursday and Friday treatments, we're hoping for a couple days of museums, art attractions, shopping and a Broadway show. But we're flexible enough to know that the next couple of days may consist of watching movies in bed back at Miracle House. My post-treatment capabilities are always variable so we'll determine our day's activities as my body dictates ... no expectations. It's without plans and expectations that room is left for the most memorable of happenings to emerge.

To again quote the poet Lady Lee:

"I'm taking down the shelf of expectations

Crowded by imitations

I learned that now I can.

I'm letting go little by little,

But I am. "

Rejected

I should be recovering from Bendamustine cycle 2 right now, but I am not. Apparently, I am still recovering from Bendmustine cycle 1, but did not find this out until Craig and I traveled all the way into New York City expecting me to get treatment.

After an hour drive south, we stayed with Craig's aunt in Trumbull Wednesday night who then graciously escorted us to the Metro North train station to get us into the city the next morning. We took an early 90-minute train in so that we could make it from Grand Central to Miracle House to drop our suitcase and get back across Manhattan to Sloan-Kettering to make a 9:45 a.m. appointment with the oncologist. Needless to say all of the packing, schlepping, car ride, train ride and taxi rides was exhausting.

I had my finger pricked for a CBC (complete blood count) check per usual then was ushered in to meet with Dr. Craig Moskowitz, as opposed to my usual doc, Alison Moskowitz (no relation) who was rounding last week. His fellow came in and checked me over and I recapped the myriad
symptoms I'd experienced over the three-week recovery period. Then the doctor came in and we did the same. He was obviously wicked smart and incredibly breezy about everything. He didn't feed into the need that Craig and I have to try to control everything about my care: Will we
do another round even though I have chest swelling? Will the transplant team be ready as soon as I have a clear scan? What about trying another drug with a shorter recovery period?

I think he got quite a kick out of us, this young question-firing couple. The doctor looked me straight in the eye, took a deep breath, smiled and said: "You know your body best. Don't worry. We know what we're doing and we're not going to let anything happen to you." It was such a simple reminder to just breathe and to realize that I am in one of the best places in the world to be treated at and that I am working with the best of the best medical staff. He, in particular, has a huge reputation in the lymphoma world and authored the study that I am on. I was a bit humbled.

He ordered the chemo and Craig and I headed to the chemo suite waiting room where we settled in for what we knew would be a long wait after our experience the previous month. We had DVDs, games and books at the ready. But before we could even start up the laptop, one of the
session assistants came over to me and whispered that I was wanted back in suite 1, that I wasn't going to be receiving treatment.

My heart sank and I was in complete shock, immediately filing through what possibly could have happened, a slight terror shuttering through me. I honed in on the fact that the little finger prick I had received early in the morning had elicited enough blood to sufficiently soak through the layered gauze and eek through the Band-Aid that was wrapped around it. I came to the hypothesis that my platelets must be very low. Damn it.

We got back to the suite and were immediately grabbed by an unfamiliar nurse who pulled us into a teeny room full of files and computers and told us to wait for the doctor. I heard her say to someone outside the door who was questioning our presence there: "It's just for a minute. It's a very special circumstance." Craig and I looked at each other with the panicked: what the hell is going on? look.

Dr. Moskowitz popped his head in with the update: "Your platelets are too low."

Ah, I was right. Platelets are the blood cells that help blood stick together and clot. If there are not enough of them present in my bloodstream and I were to cut or badly bruise myself, I could bleed to death. He explained that my count registered at 45 K/mcL (reference range 160-400 K/mcL). On the study, it is written not to treat someone under 75 and he explained that even if I wasn't on the study, he would never give a patient another round of Bendamustine with a platelet count under 50. No chemo for me. I wouldn't be able to get a platelet transfusion either. What I needed was time for my numbers to recover naturally.

"We'll try again next week," he said through a smile and told me to get my blood counts checked locally the day before and have them faxed. As instructed, I had been doing this once per week for the three weeks prior, but my counts had held and apparently none of us imagined that I'd suddenly drop so low four weeks after treatment. This was supposed to be treatment week.

This was frustrating, very frustrating. And even though I wouldn't be receiving chemo, there was still lots of waiting to be had. As a post-autologous stem cell transplant patient I still have to receive monthly Pentamidine breathing treatments to prevent me from contracting PCP pneumonia. We waited. And waited. And waited for my name to be called by the respiratory therapist. Soon I began to go batty. We were both exhausted, disappointed and frustrated, so much so that I just kept laughing for no reason and kept pretending my iPhone was a taser and "zapping" Craig with it, which kept me very entertained. Reading, writing, games were all far too much to concentrate on. Hearing Craig say back: "Don't taze me, bro" a few times over was much funnier.

Two-and-a-half hours later I was brought into a little room and zipped up in a plastic tent just wide enough to envelope me and my chair – similar to E.T. when he's being examined by all of those scary scientist men. I sucked the medicated mist from my plastic peace pipe until the 20 minute treatment was over and I could be unzipped and released out into the world.

We crashed hard after a taxi ride back to Miracle House. We stayed the night and made the most of it. Plus, we were in one of the newly renovated apartments at MH – very hip. After a big nap broken only by the incessant honks of the backed up cars in 43rd street rush hour, we watched Toy Story 3 then meeting up with good friends for dinner at Five Napkin Burger - a super trendy joint in Hell's Kitchen. Laughs, shared stories, and mile high burgers helped alleviate the frustration.

Now it's back to the city in T-2 days for a second attempt at this.

Chutes and Ladders

Bendamustine has given me quite a ride over the past three weeks. Despite being just a one-drug cocktail, it packs a punch. Kind of like the effects of drinking jungle juice made with vodka vs. grain alcohol. The latter is never a good idea. But unfortunately, I don't have a choice in this matter. If I did, I would choose straight up Hi-C.

Week 1: lukewarm hell – the debilitating fatigue, head fogginess, acid reflux, indigestion, constipation, and overwhelming malaise left me to do nothing but float around the house like a groaning blob.

Week 2: better, much better. I started to get out and about again and the gloomy skies started to clear. All systems were once again a go. Lots of hikes. Lots of lunch dates and outings. Miss cocky pants probably pushed herself too much with all the renewed energy I had.

Week 3: down again. It was expected that my blood counts/immunity would drop around this time, but the weekly CBC checks never revealed a plummet. No transfusions were needed. I guess this means my bone marrow still has steady cell building power. Maybe it was my marrow in overdrive that sent me into a bad place this week. I felt the familiar swelling in my chest. It is like having an elephant inside of my chest – not one sitting on it like I'm about to have a heart attack, rather one becoming painfully large within it. I could tell that the elephant was not happy in this constrained space.

It was tough to take deep breaths, I'd often get dizzy, and a deep cough crept in, especially when I laid down. My heart was also pumping extra hard. I could feel it push the blood through my ears loudly anytime I tried to lay down and rest. A lymph node on my left collarbone waxed and waned in size, especially if I pushed myself too much. This scared me because the feelings were all too familiar. They are the same ones I've felt every time a recurrence of the cancer has crept in ... and the trend has been for this to happen near the one month mark.

I had daily talks with my nurse practitioner (aka "bestie") at Sloan and laid very low. I diligently took my temperature and did a lot of yoga and visualizations of a chest cavity filled only with bright, white light, not damaged DNA replicating all over itself. This fear of recurrence led to a lot of anxiety, leading to chest tightness on top of the fullness, making it hard to distinguish what was going on.

I had a couple of rough mental and emotional days and a lot of nightmares. One night I was a complete wreck and tried to explain to Craig that I just wanted to take a pumpkin carving scraper to my insides. I wanted to go in and just scrape out everything growing inside of me until I was left with a heap of stringy, orange slop. He gave me a warm washcloth, instructing me to wash my face with it and stayed with me until the screaming sobs ceased.

Week 4: I'm entering this final recovery week feeling comme ci, comme ça. Neutral? The big positive is that the chest fullness is gone. The prominent lymph nodes on my collarbone and up and down my neck have at least stabilized. The cough is gone and my breathing is much improved. I'm looking forward to telling my nurse, Brynn, that things have improved. Oddly, it was after a night outside in the frigid wind at a UConn football game tailgate that I felt remarkably better. Maybe a prolonged shot of fresh air, a glittery pumpkin sticker for my cheek, and a cup of hot, hard cider is an ancient remedy of some kind – put that in the clinical trial notes. Maybe what I was feeling was a strange bug, or allergies, or paranoia. One of the struggles of being a cancer patient is to remember that I am also still a human and to not always jump to the conclusion that everything is related to cancer activity. A little post nasal drip shouldn't cause me to start making funeral arrangements.

It's been a game of Chutes and Ladders. I feel like I've climbed a few ladders and made some progress, but unfortunately the chutes have been fast and windy. This Thursday my little plastic playing piece with the pigtails, plaid skirt, and knee socks will be back at the "Start" space to begin the adventure all over again with Bendamustine round 2. At least this time I'm prepared for how high up and how low down the side effect game may take me.