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.  

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.

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.