In Search of a Raft

Ducking out in the rain with Craig for some 

Thai food to celebrate his birthday between

a very hard-to-swallow doc appointment and

an always-enjoyably claustrophobic MRI. 

June doesn’t seem to be my month this year. Really 2013 in general hasn’t been treating me that well in terms of the whole cancer thang. Everything else in life has been wonderful, but the lymphoma has really been rearing its head far too much. Too many hospitalizations. Too many transfusions. Too many side effects. Too much pain. Too many appointments. Things have not been stable for over six months now, and the up and down is tough. I know I can’t stop the waves and I’m doing my best to ride them instead, but it is getting exhausting. I wish someone would throw me a freakin’ raft I could float on for a while.

Yes, it is confirmed that all of the pain and the fatigue I was having were indicative of cancer growth. I had a PET/CT Scan done of my full body and an MRI to take a close look at my pelvis and there is progression in old spots and new spots have developed. We have to give up on yet another treatment after just two cycles. Goodbye Gemzar. Hello VBM.

VBM is a combination of Vinblastine, Bleomycin, and Methotrexate. I have had both B and V in my frontline ABVD treatment and I’ve also had V as a single-agent therapy when trying to get into remission for my allo transplant. I have never had Methotrexate used as a chemotherapy agent. This is a pretty rough, intense regimen but one that is proven to work. Apparently it is very old school, something that was used before ABVD came to the forefront of Hodgkin Lymphoma therapy and kind of got forgotten about, though it had very good results.

My scans look pretty horrendous and my pain has been equally so. To get me out of this, we started up already with the new treatment. I had my first infusion on Monday after having my PET/CT Scan that morning. Craig had taken me in for an MRI the week prior that kicked this all off. It was how he got to spend his birthday. Then this Monday was a long day in the city for my mom and me. I vow to never again take the train home after receiving treatment. It was pretty unpleasant. The train was extra cold with A/C blasting and extra jostling. I was nauseous, then had a huge onset of pain and then an uncontrollable bout of chills. I wanted to get off the train so bad and cursed the entire 98-minutes. I tried to sleep or read but nothing worked. The last 20 minutes were sheer torture. Then it was still an hour-and-15-minute drive home, though it was much more comfortable to be in my mom’s car on the heated seat. I could barely muster the strength to get from the car to my living room couch.

The post-chemo feelings continue to today. I’m very lethargic, dry-mouthed, swollen feeling. The pain is pretty well controlled, but my stomach is very unhappy and my body pretty angry. If I let myself, I feel as if I could sleep for a week straight. But, I don’t. I’m determined to still be a functioning human being even while being back on very traditional chemo. The process is bringing back familiar feelings of my past and frankly, I hate it. This is not a long-term treatment, but again, trying something to get me out of the woods here. We have to stop this disease from growing and get rid of what’s there so that I can move onto a treatment that is more tolerable and will serve as maintenance to keep everything at bay. But right now it is just too dangerous to put me on anything that is an experimental therapy.

In the meantime, I’ve started the conversation with a transplant doctor at Fred Hutchinson Cancer Center in Seattle about the possibilities of a future second allo transplant so that if the time comes that I do get a remission from this regimen, I know what all of my options are for what to do with that remission. That whole thing is nauseating in itself to think about.

Last week/weekend I attended a writers’ conference at Wesleyan University where I was saturated with teachings about the craft and the business. It was a wonderful distraction and a good dose of much-needed inspiration. It was exhausting commuting back and forth for long days feeling like I was, but it was worth it. I need to have life balance of some sort even if that means pushing it when I barely can.

Also of note: Sunday we celebrated my dad in honor of Father’s Day and also marked my second transplantaversary. June 16, 2011, was the day that I received my sister’s stem cells and began the growth of my new immune system – my “rebirth,” so they say.  It also would have been my friend Steve’s 38^thbirthday had HL not finally taken him far too soon. I cried a lot, for him, for his wife, for me and my family and thinking about what we’ve been through. I cried also because I’m so happy to still be here two years after such a traumatic experience. I cried because I’m still not cancer free and that I know there is a lot more to endure. The memories of it all are still very raw: both the ones that make me shudder and the ones that make me smile in triumph.

No, where I am at right now is certainly not ideal. I need a lot of help. But, I am here and that is what matters. I am doing my best to make the most of it and to not allow myself to fall into the pits of discouragement.

Sick or not, I still have to get groceries, cook meals, do laundry, pay bills, keep up our house, research treatments, keep on top of my medicine and appointment schedules. Sick or not, I still want to love on my husband, play with my dog, hang out with friends, spend time with my family, go out to dinners and breakfasts and see movies and plays, listen to poetry, read, write, go for walks and get back into yoga again. Thank goodness for those things or I don’t know where I’d be.

No matter how shitty I feel, the summer weather is still beautiful, the flowers striking, my love for those in my life stronger every day. This is what I tell myself to calm myself down when the fears get to be too much. I know we are teetering on the edge of no options. I’m not sure what the plan is if the disease doesn’t respond to this traditional regimen either. In truth, I am getting scared. I can’t do much else but cling desperately to hope.

In just a couple of weeks – June 29 – I’ll get to celebrate my 31^st birthday. 31. I couldn’t be more thrilled to keep reaching these milestones, though I do wish I could be running, not crawling, to them.  

Gemzar Infusion 2

The chemo-absorbing offerings at BurgerFi.

I looked at the printout of my CBC bloodwork report with disgust. My platelet level was 63,000, down from 67,000 five days earlier when I was rejected from chemo. They were moving in the wrong direction.

My mom and I waited in the exam room to see what Dr. D would say, making our own hypotheses and tossing around scenarios as I tried not to cry in frustration. I was in bad pain that morning. It had come out of nowhere when I woke up. The pain was deep in my quad muscles and shooting through my pelvis. From the moment I got out of bed I was already cursing the steroids that cause intense muscle atrophy, my overzealous walking and water aerobics cockiness and the worry that the lymphoma was already trying to bust out of my bones again seeing as I’d only had one chemo infusion in a long time. Now, I was cursing my platelets’ performance: angry, teary and woozy from pain meds.

My heart rate was up – probably from the pain, Dr. D said. We talked things out thoroughly and thoughtfully, all three of us on the same page that I was between a rock and a hard place – or more accurately, cancer growth and death by bleed-out. Maybe that’s a little extreme, but everything seemed extreme Wednesday morning in that little room where the lights are too bright and the chair placement too awkward.

My platelets were technically too low to get another treatment. We learned from the first dose that they are very sensitive to the Gemzar, so if we whopped them again while they were down, we could only assume that they would be killed off even further. Very low platelets equal very high bleeding risk.

However, if I didn’t get chemo then we would really be falling off any kind of schedule and risk the chance that the infusions wouldn’t be effective. Here was my scientific theory: If we let so much time go in between infusions then are we just playing whack-a-mole? Let the cancer grow a bit, then come in and knock it back, then let it grow again, then come in and knock it back. Seems silly. The whole point of this little project I’ve gotten myself into is to abolish the lymphoma that’s rearing right now, knowing that the side effects might be rather harsh. Then, get me off of this when I start really feeling better and get back onto milder, more sustainable, lifelong treatments (or second transplant – eek.ugh.barf.scary.potential.).

Dr. D admitted that this was his worry as well. He wondered if we should push me a bit more. I looked at him with wet eyes and said that I was very disappointed in my platelets. We laughed a little and he assured me it wasn’t my fault and said he wanted to collaborate with Dr. O – see if he might agree that we should push a treatment. Would I mind waiting?

My mom and I took a place in the open infusion room, passing the time with a port flush and sed rate blood draw waiting for the NY and CT doctors to connect. We read and chatted, trying not to disturb the two older men filling chemo La-Z-Boys, one deep in sleep while receiving a Reiki treatment. I was so anxious. I don’t think I’ve ever wanted chemo so bad.

And, I got it. My two docs decided to hit me with a reduced dose of Gemzar as a compromise between not damaging my bone marrow too much and allowing the drug to keep working against the cancer. Fantastic plan! The chemo dripped over half-hour and we were out to enjoy the 70-degree weather and sun, both starving, me ferociously after the pre-chemo Decadron steroid.

Driven by my Decadron cravings, I was more than happy to introduce my mom to a new burger joint not far from the Avon Cancer Center. We sat on the patio in the sun and indulged in the high-calorie deliciousness of a cheeseburger, Parmesan herb French fries and custard milkshakes. The food absorbed the drugs within me and I immediately felt more stable. The pain began to subside as an added benefit of the steroid. We further balanced the unpleasantness of the morning with a trip to HomeGoods to poke around and search for curtains for our newly redone dining room. The day such a positive turnaround with good company, food, and shop therapy.

The continued “Special Karin Regimen” seems to have worked as well. I have been feeling great since Wednesday’s infusion. I even skipped much of the requisite chemo wooziness I most always feel for a few days after receiving any drug. I think we may have found my magic dosing. Sure, I’m tired and a little achey, but I’ve been up for lots of social events, seeing friends, taking Sam Dog for walks, and writing on our porch in this ridiculously nice weather. Yesterday’s bloodwork revealed my platelets climbed to 77,000! Hopefully that trend will continue and my bone marrow will be up for another Wednesday dose. 

Working My Way Out

photo courtesy

Salvage treatment has started. I had my first infusion of Gemcitabine (Gemzar) chemotherapy this past Friday. It is not a drug that is new to me: I once received it as part of the regimen GND, one of the first regimens we tried to get me into remission after I relapsed from my autologous stem cell transplant in 2010. Now, we’re hoping it’s the lone ranger that will be my “get out of jail free card,” as Dr. O puts it. I don’t think it’s going to be a “free” ride by any means, but more of a “guaranteed” ride, as it’s well proven to work against HL. The side effects are supposedly small compared to other chemos, but chemo is chemo and it still makes me feel like shit. And for me, after being through so much of it, unfortunately, I’m more sensitive to those side effects.

This plan hatched after a long conversation at Columbia with Dr. O, my mom, and myself after he and his team had poured over my treatment history and attempted to find creative ways to get me out of this current situation.

A positive takeaway was that Dr. O said the amount of disease I have in my body is really unremarkable. He says that normally looking at my PET Scan and CT Scan results, doctors would give a shrug and give a “eh.” Unlike other patients, I am not contending with a 9cm mass pressing in my chest. For this I am grateful. What I am contending with is disease that – though scattered and therefore not causing any immediate danger ­– is in annoying places that causes it to be symptomatic. Annoying places like my bones and along my vertebrae, which leave me with pain syndromes. Because of this, we must treat a little harder so as to not allow those places to get worse.

We are dose escalating this drug, not using the normal protocol, but a special “Karin protocol” because we know how compromised my bone marrow is from all the treatment I’ve received – most especially my two stem cell transplants. With each treatment it gets harder for my body to muster the strength to create new cells after the chemo wipes them out. My body is tired. Therefore, we’ll watch my blood counts closely, as Gemzar can especially take a hit on my platelets. If things look good, we may add in another drug to the mix. I’ll be riding out this plan for a few months and we’ll depend on my symptoms to reveal improvement and will put off imaging until necessary. Another thing to remember: all of these PET and CT Scans expose me to more radiation, which means more cancer risk.

We had a lot of laughs with the doc and his amazing nurses. Dr. O and I hugged it out solidly. I know he wants the best for me and that I’m in good hands. I love the connections that I have with the team through e-mail and how I never feel like I’m floating out on my own. Though we have these really serious conversations, we can follow them up talking about our favorite candies and how my hot flashes were causing me to strip on the train and how the Decadron he gave me would have me pushing the damn train back home. It feels good to feel like you’re in a human environment.

Fortunately, I am able to receive the chemo locally at Hartford Hospital so as to avoid weekly trips to the city. I feel even more at home here, having been treated at the Helen & Harry Gray Cancer Center on and off for almost four years now. Secretaries, lab techs, nurses and doctors aren’t just my medical team, but truly friends. Not much changes there which is comforting, but also sickening as it brings back a lot of tough memories. I do my best to focus on the sweet moments and not break down at the saddened faces of those around me in the other chemo La-Z-Boys. This chemo drips over only a half-hour, making it about a 90-minute trip with pre- and post-meds, port insertion and removal and rigamarol. Not too bad. Then it’s just a 20-minute vs. 3-hour ride home to my couch where I can sleep it off. So far Dr. D and Dr. O are working together seamlessly and I’ll take the trek into the city once a month to check in and get checked out.

Though the infusion process was just another infusion process, it’s been a chemoey few days. I wanted to see no one over the weekend, and I was in quite an emotional downturn. The fatigue was – and still is – pretty tremendous. If I put my head down, I am asleep. My body also has that familiar swollen feeling both from the chemo drugs and the extra super Decadron steroids I get with the infusion. We are again trying to get me off of steroids of any kind since we can now rely on the chemo to hopefully be holding back the cancer. My eyes are bulged and my muscles and lungs even feel very tight. I went on a walk around my neighborhood yesterday and it was very hard: hard to breathe and even hard on my muscles.

Gotta have goals. I will be strong again.  photo courtesy

I’m realizing that I am very out of shape as I’ve had to “lay low” so much after the pneumonia debacle, long hospitalization, pain syndromes then biopsy procedure. Finally this week, I get the go-ahead to start using my arm again and my plan is to ramp things up again – gently, but consistently. I have this incredible urge to get strong again. I hate the feelings of weakness and lethargy and I don’t want to bow down to the chemo. Today was a much easier walk with Craig and Sam and this week I’m going to take my first dive into water aerobics – gentle, supportive, non-impact and a certain way to make some senior citizen friends at the Y.

Soon – hopefully only a few months of this ­– and fingers crossed, we’ll be able to decide the next step as this is not a sustainable treatment. I already got all choked up in the doctor’s office anticipating what that next step will be. It will be a massive life decision, as if I have not made enough of those already.

If/when the Gemzar does what it is expected to do, I will ideally be left in a state that is real close to remission. Now, what to do with that remission will be the big question. I’ll immediately jump to a clinical trial with the hopes of it holding that remission in place as much as possible. Then I have to decide: stick with the clinical trial route and hope that science keeps moving fast enough that I can jump from one to the next for the rest of my life – keeping things in a potential state of constant flux. Or, strike while the iron is hot and take advantage of the only short remission I may ever get and attempt a second allogeneic stem cell transplant, this time with a matched, unrelated donor.

This second option scares the shit out of me, but it is an option, probably the only option besides some miracle or huge scientific advance that could guarantee me the highly coveted long-term, cancer-free remission (after a long recovery process and most certain bouts with risky graft vs. host disease along the way.)

No matter what, I do want to know if this option is even a viable option for me. I like to pour over options. Could my body handle it? Is it advisable? Is there even an unrelated donor out there on the Be the Match registry that is a close enough match to me?

Time is of the essence, as I learned with my first transplant. If I do reach remission from the Gemzar, I need to be able to jump immediately when that happens. Therefore, we need to start tapping resources now. I’m being connected with transplant doctors at City of Hope in Los Angeles and with Fred Hutchinson Cancer Center in Seattle: the two leading transplant centers in the nation with regard to second transplants/haplo transplants/mis-matched transplants – all the fancy stuff I’d be getting into. It’ll be good to find a team and a pseudo-plan now so we’re not scrambling. The Columbia transplant doctor will also begin searching the marrow registry for a match for me, and I’ll be in touch with my Sloan team as well.

Deep breath. As much as I want to say that is all months away and I don’t need to worry about it, I do need to lay a foundation and that takes time, fortitude, and along with that comes, confusion and anxiety. At the same time, I need to focus on getting myself through this immediate step, incorporating the weekly infusions into my life, getting my strength back and highly refocusing on my healthcare plan. I need to do whatever I can do to complement/combat what this chemo is doing in my body so that I’m ready for the next step.

And not just the treatment steps. I’m also gearing up for another beautiful summer of paddle boarding and kayaking, weekend beach travels, more writing opportunities and volunteering. More living my life out loud rather than on the couch. The end of winter was rough in many ways and I’m ready to break out. Right now I’m sick of recovering from this chemo and it’s only been three days. I need to get over that, take a gut check and be grateful I even have this option. I need to be gentle with myself and also kick my own ass. Easy f’in peasy, right?

SGN-35 Treatment 4

I was back in the chemo chair at Sloan-Kettering yesterday for infusion four of the targeted drug SGN-35 (Brentuximab Vedotin/Adcetris). My mom accompanied me for support, company, and as post-train car driver as I’m a wuss when it comes to handling the Benadryl that I am pre-treated with.

It was a smooth, but slow process. Clinic was running late. It’s just the nature of the beast as the needs of those coming in for treatment and doctor visits are just so variable. Though the infusion is only 30 minutes, the entire process of waiting to see my doctor, seeing my doctor, waiting for the drug to come from the pharmacy, and actually getting my port accessed and the drug infused totals about four hours. Add in the 3-hour travel time each way and there goes the day. Three years of it has taught us how to prepare with good books to read, phone charger at the ready, and loads of snacks.

My blood counts look fantastic. Everything is in the normal range and I don’t even show a trace of anemia, which is very rare for me. The only thing that remains out of whack is my sed rate, which isn’t unexpected due to the lung inflammation and steroid course that I am on. It’s not even registering at greater than 100.

Dr. Moskowitz did notice that I’m developing some thrush in my mouth, which happens with a high-dose steroid course. It’s white and dry and bumpy in there – yuck. I’ll be doing a prescription mouth rinse to combat that. My lungs sounded pretty good and there were no palpable lymph nodes or really any serious concerns to mull over. It was a painless and event-free visit.

We talked some about how we’re looking at my disease as a chronic illness now – something that I can live for a long time with as long as we can maintain control without detrimental toxicity. I asked her to try and qualify me somehow against other HL patients to get an idea of where I stand against this disease. I realize it’s an arbitrary question, but she so thoughtfully talked me through where I’m at, where I’m going, treatments in development for me down the pike and provided me encouragement that I am doing extremely well given how heavily treated I’ve been. She actually said I was a “rock star.” This was a very welcome compliment as I often don’t give myself enough credit and can get very frustrated and impatient with my progress and capabilities. Sometimes it helps to put things in context. I could have it a whole lot worse.

I do need that reassurance sometimes and it helps most to hear it from the medical professional that deals so intimately with this disease and those of us battling it. What I love about my doctor is that she is positive but realistic with me. She doesn’t blow smoke up my ass. She knows I am educated about my disease and she understands my goals for quality of life. This mutual understanding is invaluable.

While I started up with treatment my mom went to grab us food and we noshed on wimpy wraps that made us laugh at their ingredient sparseness and ridiculously moist and satisfying scones from one of our favorite little NYC joints: Alice’s Tea Cup.

As soon as the Benadryl pre-med finished dripping in I was out cold, coming in and out of sleep all confused about where I was. My mom watched over me and some Olympics coverage on the little overhead TV until my treatment finished and I was unhooked. I had no coughing spasms or bronchial tightness as I have in the past. Hopefully this is a sign that the course of steroid treatment worked and that the drug is not exacerbating my lungs. Time will tell.

Our train ride home was equivalent to a wooden roller coaster ride it was so bumpy and erratic. Whoever was conducting that MetroNorth train felt the need for speed or else our car wasn’t quite attached right because we were shaking and rocking the whole time – not the most comfortable of treks home.

We arrived after the final hour-long stretch of road from New Haven to Tariffville to our deck table set for three complete with flowers and candles and Ray LaMontagne playing in the background. Craig had prepared a meal of coconut and panko-encrusted chicken and Parmesan baked green beans from my parent’s garden. My mom and I were more than happy to indulge after our paltry lunch and unnerving train ride. It was quite the treat to arrive home to after a long, long day. The three of us enjoyed good conversation in the fresh summer air with Sammy underfoot nuzzling around for one of us to give her head a pat.

I slept hard last night and made it through until 8 a.m. – the latest I’ve slept in a very long time while combating these hyper steroid effects. Today has been foggy and achey. My body is very, very tired and swollen. My eyes are burning and my brain slow and irritable. It’s a typical post-chemo day. I know it will pass, but I do mourn every time I feel like this again as it triggers difficult memories and realities. So today I’ll let myself mourn and tomorrow I’ll start picking myself back up again as I look forward to a weekend on Cape Cod where the real healing will begin.

Vinblastine Treatment 4

I'm feeling decent, though the Vinblastine single-agent chemotherapy that I'm on is pretty tough. The primary side effects have been fatigue, deep tissue aches, jaw pain and tightness, and neutropenia (very low white blood cell count/immunity). The drug is given through a short syringe my nurse injects into my port by push after my anti-nausea and steroid premeds are run. It’s incredible what affect such an innocent looking amount of medicine can do. I can’t let the dosage fool me; it packs a punch!

Scaling the wall 

The Vinblastine has done a number on my white blood cell count. The plan was to get weekly infusions, but my bone marrow has said otherwise. To give it some credit, I have been very heavily treated and my marrow is quite compromised. I’m proud to see that it has still been able to produce blood cells at all – for this I am grateful. I’ve never been unable to rise back to normal blood count levels with time or drug assistace.

To remain safe, my WBC count has to be at least 1,000 in order to receive treatment. It hasn't been able to stabilize quickly enough to endure the original, aggressive weekly plan, so I've been more on an biweekly treatment basis. My counts were too low to get treated last Wednesday (ANC 0.6), which is why I felt pretty good last week and this past weekend without the chemo effects. In fact, I felt good enough for a day of indoor rock climbing with Craig. It was our first time and something we both loved. I especially loved the sweet reward of getting to the top and the mental challenge it took to figure out how to get there. I had no problems beyond any normal climbing fatigue and a few battle bruises endured from banging my knees into the wall. It was an exhilarating, rewarding and gratifying experience. There will be more of these types of adventures to come for me in 2012.  

But back to treatment … . On the off-weeks, though I haven’t been getting infusions, I do receive Neupogen shots to stimulate my bone marrow and get me back into the safety zone. These are very tough on my body – something that is new since transplant. It's been explained to me that the medicine may cause more pain now because my new immune system may be more sensitive to it. The days following these shots have been utterly debilitating! The bone pain is horrendous – from the large bones of my hips and back to the smallest bones in my head and jaw. Dr. Dailey and I are going to try to avoid the shots this week, rather than giving them to try to force the possibility of another treatment next week. The hope is that my counts will recover on their own with a week off and we’ll just be satisfied with that schedule. Unless I drop below 0.5, I’ll escape the injection. Yesterday was my fourth Vinblastine infusion. One more is scheduled for two weeks from yesterday. Then we check in and see whatsa happening.  

A rash flare on my ankle/foot - GVHD?

The Graft vs Host Disease of my mouth continues, as do the steroid rinses, which keep it at bay so that it's really not bothersome, just strange and kinda gross. There has also been a new, exciting development – I've been developing rashes and welts on my skin. A rush visit to my transplant doctor last week revealed it's likely that this is a manifestation of GVHD as well. He did a skin biopsy on which I am awaiting results to find out if it is an auto-immune attack process happening. If it is, then that means it is likely my sister's immune system is also going after the lymphoma and hopefully giving me the desired Graft vs Lymphoma effect, which I went through the whole allo transplant process to achieve. 

Next big marker is a PET/CT Scan on Feb. 10. If it is looking clear then we likely will do nothing - fantastic, fantastic and hopeful news! I will come off my current chemo and we'll let my donor immune system continue to do its work. My doctors and I hope that we've been working the brakes and the gas correctly by balancing immune suppressing/lymphoma eradicating chemotherapy with increased action of my new immune system. The whole idea is to stay ahead of the lymphoma so that my new immune system has the chance to be able to catch up with and go after it.

If there is some disease reduction, but still some lymphoma present, then we may go forward with the Donor Lymphocyte Infusion of some more of my sister's cells. However, we'll have to weigh what the status of my GVHD is at that time as more of her lymphocytes might push me too far into the danger zone of severe or fatal Graft vs Host Disease manifestation.

Severe flare with welts on my hip flexor/stomach area

We are trying to avoid systematic steroid therapy and all of the side effects and long-term damage that can cause, and instead going for more targeted steroid therapy. In addition to the Dexamethasone mouth rinses, I now use a topical steroid cream for when rashes and hives enflame anywhere on my body, which has been happening about once a day now. These are totally manageable and treatable side effects, effects I am grateful to live with, especially knowing these they are likely a sign that I am moving closer to a cure.

Life outside of treatment has been pretty wonderful lately. I think that the dark cloud I was in has moved past. Cancer is really only a small piece of my life right now. I have so much more to write about and look forward to telling stories of my adventures outside of all of this – more entertaining writing to come this week! It can be difficult to rehash the realities, fears and goings on of my current therapies and cancer patient status. This is why much time has lapsed between posts lately. I often want to do anything but talk or write about what I’m going through. But, then I realize the importance of doing so in order to keep a log for myself, for those that love me and worry about me, and for all those other patients out there trying to navigate this crazy cancer world. This is bigger than myself and my own avoidance and laziness. So like it or not, I’ll keep the boring treatment update blogs coming – interspersed with some more fun and (hopefully) insightful posts as well.

Research Study for One

Last week, Dec. 23, was a big day and turned out to be a great day. After the much shocking and regrettable news from a few days earlier that my PET Scan was not the crystal clear gem we had hoped for, the news we got from the doctor on this day was much easier to swallow.

My mom and I took an early train into NYC to be able to enjoy some exploring surrounding what would surely be a comparatively short Sloan appointment. I had a lot of energy (and a huge appetite) due to the daily 100mg of Prednisone I had been taking to calm the Hodgkin's symptoms until SGN-35 could be secured. We meandered uptown from Grand Central and stumbled upon the New York Public Library – an institution neither of us had ever explored. We ducked in and I was immediately in love with the ornate arch detailing, the marble columns and stairs, the intricate and stunning paintings that canvased the rotunda ceilings.

We explored a few floors taking in the massive ceiling to floor windows encased in deep mahogany trim, which shed a cool winter light onto the dozens of people that lined the long library tables with their noses in books and study materials. I ran my fingers along the worn cloth spines of Lord Tennyson, Dickens and Tolstoy – faded jewel colors of scarlet and emerald, the titles calling out in delicate gold lettering. I opened a couple to finger the years-worn pages and ingest the deliciously musty smell that only an old book can emit.

Stunning was the holiday tree in the library's entranceway, a towering figure decorated with artificial birds of all colors peeking out from behind Victorian bows and lights. Behind that we stumbled upon a fascinating special exhibition, "Three Faiths," which compares and contrasts the traditions and beliefs of Islam, Christianity and Judaism by looking at the religion's ancient texts, materials and art. It was remarkable to admire these historic printings from the tiniest of Korans to Hebrew texts complete with engrossing hand painted illustrations. From behind the glass encasements, each told a story about the many sets of hands that wore their covers thin, and whose pockets they traveled the world in.

As much as I desired to park it there for the rest of the day, it was time for us to travel to Sloan, back to reality. After bloodwork and vitals checks, we were quickly ushered in to see Dr. Moskowitz. She was proud and impressed and eager to tell us that everything went through without a hitch and that I was the "perfect" candidate to receive the still investigational chemotherapy drug SGN-35 (brentuximab vedotin) on a compassionate use basis.

The drug is manufactured by Seattle Genetics, Inc. This is the company that is putting it into my doctor's hands, agreeing to provide the drug to me outside of a clinical trial setting. Though SGN-35 is currently being studied in clinical trials at leading cancer centers across the nation (including a very small double-blind placebo study at Sloan), the trials are closed to enrollment or I am not eligible for them. Because of this, my team of doctors had to write an individual research study for me, which was approved by Sloan-Kettering's Institutional Review Board (IRB) and the US Food & Drug Administration (FDA).

My progress will be watched closely by all parties. My response and side effects will be watched extremely closely by the lymphoma team at Sloan as I am in fact the first patient that the institution has secured the drug for on a compassionate use basis. The first patient at the leading cancer hospital in the nation. To further emphasize what a small pool I am in now, all of the nationwide clinical trials that have taken place as the drug has been developed total just over 200 patients that have been treated with SGN-35.

This "distinction" obviously comes as a double-edge sword. I feel incredibly fortunate that this science has advanced to the point that it can potentially put a stop to these rapidly multiplying Hodgkin's cells, but wish I wasn't in such a dire situation. I am immensely grateful for the scientists and researchers who have devoted the research time and dollars to an oft forgotten type of cancer, which is still treated with the same front line drugs that it has been for 30 years. There are not many options out there for those that experience a Hodgkin's lymphoma (HL) relapse as I have and it is about time that a drug of this potential will soon be on the market.

About 8,500 people in the U.S. are diagnosed annually with HL and 1,300 of them die, according to the National Cancer Institute. While the disease can be cured in about 70 percent of patients, that leaves 30 percent uncured. This is not okay and this is why more cancer research and more clinical trial participation is needed.

As fascinating as this all is, I would have been perfectly content living in remission after just six months of ABVD chemo. Every single morning I wake up and run back through the entire journey, still not understanding why cancer chose me and why not just any cancer, but an aggressive subset experienced by only very few in the world – the vast majority of us being young adults with the mean age of 31. Should I feel special or shafted?

As I've been repeating to myself often lately: "You can't change the cards you're dealt, only how you play the game." I am playing my hardest and I will come out on top. There are just many, many, many more rounds than I expected.

This next "round" starts Thursday, the second-to-last day of 2010. Craig and I will drive down to Sloan where I'll receive the first infusion of SGN-35. It will drip into my port for about an hour. I'll then receive it again three weeks later. The chemo has a 21-day cycle. After this second cycle, we will check a PET Scan in hopes that it has blasted out all remaining cancer activity. If not, then more cycles will come.

I of course received the list of "Likely" and "Rare but Serious" risks and side effects per usual for any chemo I've been on. The biggest concern that has come up with this drug is peripheral neuropathy, or losing feeling and function in the arms or legs because of nerve damage. Otherwise, the side effects are not expected to be too bad as the amazing part of this drug is its honing capabilities. Instead of blasting every fast growing cell in the body as old fashioned chemotherapy does, leaving the patient ravaged, SGN-35 goes right for the CD30 cells present in HL, inserts itself there and drops a little chemo bomb right inside the cell. The premise is that it leaves the surrounding cells essentially unaffected (only about 15% of non-cancer cells are hit).

The "Patient Informed Consent for Clinical Research: Treatment with SGN-35 for single-patient use for a patient with relapsed/refractory Hodgkin Lymphoma (HL)" protocol I was given by Sloan to review describes the process well:

"While most patients with Hodgkin's lymphoma respond to treatment that includes high-dose chemotherapy with or without radiation, followed by an autologous stem cell transplant, some patients do not. Some patients with a progressive or recurrent disease after standard treatment respond to salvage chemotherapy (a second chemotherapy treatment). However, relapse remains a major problem, particularly in patients with poor risk disease.

SGN-35 is a type of drug called an antibody drug conjugate or ADC. ADCs usually have two parts: a part that targets cancer cells (the antibody, which is a protein that is part of the immune system) and a cell killing part (the chemotherapy). ADCs can stick to and attack specific targets on cells. The antibody part of SGN-35 sticks to a target called CD30 (a molecule on some cancer cells, including Hodgkin lymphoma and some normal cells of the immune system). The cell killing part of SGN-35 is a chemotherapy called monomethyl auristatin E (MMAE). It can kill cells to which the antibody part of SGN-35 sticks. More than 200 people with cancer have already been given SGN-35 in research studies. These research studies were done to test the safety and efficacy of different doses of SGN-35."

It's the last question on the informed consent packet that really is the kicker and made me chuckle a bit:

"Are there benefits to being treated with SGN-35?

Treatment may or may not make your health better. We do know that the information from this treatment will help doctors learn more about SGN-35 as a treatment for cancer. This information could help future cancer patients."

No one is making any promises, but the potential really is immense. According to a Bloomberg Businessweek article from Dec. 6, SGN-35 wiped out tumors in one-third of patients with hard-to-treat Hodgkin lymphoma and reduced the cancer by half in another 40 percent, a study found.

Here are a couple more helpful links about the inner workings and efficacy of the drug:

• MD Anderson Cancer Center video interview with Dr. Anas Younes
• Podcast interview with Dr. George Canellos of Dana Farber Cancer Institute

To take a break from all the technical jargon and to celebrate the news that I qualified for this drug, my mom and I indulged in some NYC eats and another dose of culture. We cannot remember the name of the Italian restaurant we found on 57th and 11th, but will never forget the food. We stepped in from the bitter cold December wind to enjoy a three-course prix fixe menu, eating such decadence as gorganzola cheese bread, flaky salmon swimming in lemon and butter with the perfect carmelized crust, and classic liqueur soaked Tiramisu for dessert. It was a ladies' lunch to remember. We clanked our water glasses a few times as we enjoyed the perfect people watching perch at our window side table.

Then we lost ourselves in some mind-bending exhibitions at the Museum of Modern Art. We had acquired some free passes, so the fact that we only had a short time to explore didn't elicit admission fee guilt. Days and days could be spent traversing the place. We only saw a very small fraction, but it was awe inspiring nonetheless. We saw Dalis, Picassos, Seurats, Van Goghs, Monets, Chagalls, and works by many, many burgeoning photographers, painters, and sculptors ... even an exhibition of Andy Warhol film clips and a musician playing the piano from the inside out and backwards while walking it through the performance space. The museum was swarming with visitors taking photographs, leaning in to and stepping back from works, speaking languages of every dialect. It was a regular world melting pot of art lovers and my mom and I couldn't have been more thrilled to be there.

We took a brisk walk back from MoMA to Grand Central navigating through the slews of holiday tourists that packed the mid-town stretch. After sipping our coffees and nibbling our baked goods, my mom fell asleep and I delved into my book as the train rumbled us back to the station where my Dad's warm car waited to take us home. We were content, tired, and exhilarated all at the same time. It was almost Christmas after all ... .

Perceptions

I was listening to the introduction of Randy Pausch's "The Last Lecture," a speech I've listened to many times in my pre-cancer life, but this time it made me burst out laughing. After he explains that he has approximately 10 tumors in his liver and his doctors told him that he has three to six months of good health left, he follows up with: "If I don't seem as depressed or morose as I should be ... sorry to disappoint you." He then proceeds to pump out one-handed and clap-between push ups and demonstrate that he's probably stronger than most anyone in the room. Unfortunately, he's since succumbed to his terminal cancer, but it's obvious that he blew away perceptions and expectations along his journey.

People – friends, family and medical staff alike – constantly say to me: "Well, you look great," or if it's over the phone, "Well, you sound good." And I always wonder what their expectations were. Then I realize that on paper, yes, it makes sense that for what I have going on in my body and how aggressive this cancer and this treatment is, I should look like an ashen walking corpse, but that is simply not the case.

Despite how widespread cancer is in the world, there seems to still be such a stigma around the word that elicits a lot of fear and mental images of people spending every waking moment vomiting, weak and morose dangling from their last thread of life. When in fact, so many people are living, yes, living with cancer. Living despite the disease in their body.

Anytime I'm in a crowd at a sports game or the mall or at a play, I am always wondering how many other cancer survivors/fighters there are surrounding me that I would never be able to pinpoint. We don't all look alike. We don't all feel the same way. The word "cancer" is just far too general to describe the intricacies and uniqueness of the different forms that it can take. There is no one picture of what a cancer patient is supposed to look like.

That's the funny thing about cancer. It can wreck havoc internally but not show anything outwardly. How can I fault anyone for not knowing what to say when they see me for the first time in a long time? Or, when I drop the cancer bomb because they have no idea what's been happening in my life. There is no "right" thing to say.

Saying anything is better than saying nothing at all, even if it's just saying: "I just don't know what to say." To again quote Randy Pausch, as his father always told him: "When there is an elephant in the room, introduce it." I try to be sure to acquaint people with my elephant when I can see they are struggling with whether or not to acknowledge the figurative animal for fear of upsetting me. It doesn't upset me. I know it's there and I appreciate when people express their empathy and support. But pity? Now that's something I don't appreciate.

I laugh because despite how curious it is for me to hear, I catch myself saying to other patients: "Well, you look fantastic!" all the time, because you know what? It's true. And maybe it sounds trite and maybe it can be perceived that it's discounting what they're going through, but I think any cancer patient can benefit from a little ego boost, especially when we are hurting so badly on the inside. No matter what might be happening biologically, the spirit still shines through brightly. That is something that can't be overtaken by sunken eyes and pale skin. Sometimes it takes someone else to point that out.

I read an excerpt by writer and performer Jenny Allen, author of the one-woman play: "I Got Sick Then I Got Better." She was also a patient at Sloan-Kettering and was featured in the hospital newsletter. I don't agree with everything she says, but I think it's refreshing and extremely brave for her to speak about what it was like for her to hear the sometimes profound, sometimes odd things people chose to say to her and about her resulting reactions, which totally depended on her mood that day – something I can completely relate to. Talk about acknowledging the elephant in the room.

Cancer patients aren't just the feeble, bald, hopeless beings that Lifetime movies are made of. We're still people. We're still living. And yes, damn right, we can still look damn good.

Sometimes the Rug Comes Out From Under

Everything that I had worked my whole life for had come together. Young, spirited, excited, carefree – taking on the world. My world. At 26 years old, things had fallen into place. I had a beautiful home, married my high school sweetheart, adopted a crazy loveable dog, and was thriving in my career. I think a lot about what happened. What signs did I miss? What could I have done differently? I try so hard not to think about these questions ... and the worst offender, the "why" because I know there is no answer.

The definition of insanity is banging your head against a wall over and over expecting a different result. No matter how much I bang it I'll never know why this happened to me, what I did to deserve this, and why it happened now, in my prime, with so much going for me. Before I worried about whether the work day was deserving of a "power suit" and looked forward to coming home on Fridays and having a beer and playing corn hole in our front yard to "de-stress" from the week. Now I worry every day about what will happen next and if this disease is going to kill me. I had no idea what stress was before this.

I am so young. It hurts so deeply to think about what a sharp twist of fate I've endured. I literally had the world at my fingertips. Now at 28 years old I'm still grappling with this giant and it is only growing bigger and I am only losing more control.

I am not naiive to the fact that I have been very fortunate in my life, but things didn't come on a silver platter and that is why I am so appreciate it all so much. I built this life and formed amazing relationships with the people who have helped me to get here. To think of this foundation being pulled out from under me and for all of this to end is too much to bear at times. I've written these words before but it scares me more than anything to think that my life was so beautiful and perfect that it wasn't met to last ... that what some people seek their whole lives to find was given to me in my first era and I've used it all up.

For my entire life I have been a hard worker. I took homework seriously from grade school through high school and was always very hard on myself - pushing and pushing to do my best. I studied very hard in college and am incredibly proud of my degree. I rejoiced at the opportunities I had in the three career jobs I've held since school and worked second jobs waitressing tables and carving meat to be able to save and make ends meet. Now it pains me greatly to lose ground, miss opportunities, to say that I am home collecting disability payments. It makes me sicker than the cancer does.

Craig and I endured a long-distance relationship for five years – across states, across the world holding together visit by visit. Finally, we could be together every day. We married and bought this beautiful three-bedroom house with the intention of filling it. Now those extra bedrooms sit vacant with the doors closed so as to not waste the heat. My fertility will no doubt be gone after this next intense procedure if it is not already. My thoughts are often with the three embryos cryopreserved and waiting for when my body can hold them. I worry that my body will never be a safe place for them to grow in.

Don't get me wrong. There are many wonderful things have come out of this experience and my life is by no means a pity fest. It's rich and full.

.....................................

At that very moment, while keying those above words on Tuesday afternoon, an unexpected car pulled into my driveway and I put down my laptop. It was my mom and sister. If I thought I was having an emotional day earlier, their arrival really opened the water works to free flow. I tried to compose myself but realized it was a lost cause when I caught a glimpse of my smeared, red blotchy face in the mirror. It's very, very rare that my family sees me cry as I don't like to upset them by being upset, but there was no hiding it.

I opened the door and said out loud:

"What are you psychic? I'm having a bad day." and just started bawling crying.

My mom hugged me for a solid while, then my sister, as I shook in each of their arms.

"Oh no ... little Karin," says my sister as she squeezed me until it almost hurt.

"We decided to come over and plant some tulip bulbs so that you can have something beautiful to look at while you heal this spring," said my mom.

After a couple more teary chokes they were outside digging 44 holes in the soil along the back of our house and I was inside making them grilled cheese and tomato soup. We didn't have to dwell and discuss it too much. They knew why I was crying and upset. I was frustrated and scared and tired, tired, tired of everything ... the same things they are feeling.

This is why I survive. This is why I have made it this far in essentially one piece with my wits about me and my perspective still on the sunny side. Without fail, as soon as I'm about to give up, a much-needed voicemail is left, a funny card arrives, a stranger in Times Square gives us free tickets, Craig comes home with a surprise dinner cooked by a coworker, or my family shows up with tulip bulbs. Knowing how much people care about me gives me that strength to fight harder. Sometimes knowing how much I care about myself just isn't enough. Knowing that I have a place in the world, that without me, there would be a void, is quite a motivating reality.

My family is not a serious bunch and we're all a little crude and unique. My mom is not the kind to coddle and coo over me. She'll let me be sad for a bit then usually say something like: "Alright Choppy, let's go. You're fine." There are no long, deep discussions and 'woe is us' complaints. For this I am so grateful. Mooshy, mushy is not my style. I hate for people to fuss over me like I'm an invalid. Soon enough we were eating and chatting then popped in the Christopher Guest movie Waiting for Guffman. My mom snored through it but my sister and I laughed out loud. The whole out-of-control emotional raucous of the morning was all but forgotten except for how greatly tired it left me, but this time it was a good, warm worn-out tired, one that meant that I had gotten it all out. And that takes work.

Affairs of the Hair

I hit a major milestone last week. I got my hair cut. I'm defining the word "cut" liberally here, but I did actually go to a salon, get my hair washed and shaped. It was quite a different experience than my old days of my long hair being slathered in goop then folded into pieces of tinfoil all around my head, long periods of time spent under the dryer with a magazine ... and all of that before the cut even started. But it still had all of the relaxing benefits time at the salon can provide. It was a very proud moment for me and my hair follicles.

I have completely lost my hair and grown it back, twice. It's gone from bald to stubbly to scruff and all of the stages in between several times over. But this has been the first time since all of this began that it's grown back enough to warrant a shape and to almost, almost pass as an intentionally cut hairstyle. I was just about there around Christmastime last year and was able to style a mini faux hawk but that all ended with my first shocking relapse and is quickly as it grew in, it was that quickly gone again.

Entering the salon, I was wary. My stylist had most certainly thought I "broke up" with her long ago as I hadn't been back in 15 months. Granted I've broken up with many a stylist in the past but I really loved her. I didn't know how I was going to broach the subject of my absence: "It wasn't you, it was me ... " wasn't exactly apropos. Plus, I look like a completely different person since last time she saw me.

Turns out that wasn't a worry. The salon had made a donation to the golf fundraiser our friends put on for us and the day before, the local paper had arrived which contained a post-event story and included a detailed account of my cancer journey. She knew everything before I had to say anything. No need to break the awkward ice.

Before we started hair talk, she pulled out a stool and sat right across from me and told me just how stunned she was as her eyes welled. She's only a few years older than me. She had read theSimsbury Life article, saw my name on her schedule and looked back realizing that in fact the last time she saw me was in May 2009, the same month the article indicated I was diagnosed in. I explained that yes, just one week after I saw her for a cut and full highlight I was diagnosed with cancer. Two weeks after, I shaved my head. The tears that filled her eyes said everything then she popped back with: "Well, I've worked with post-chemo hair many times before ... and don't worry, you're hair will calm back down again."

My hair had started to creep into a clown wig style fro. After a recent doctor visit when I had to face a mirror while waiting for the doctor to enter the room, I explained to Craig: "If Lionel Richie and Justin Timberlake had a love child, this is what its hair would look like."

On humid days especially, the super tight curls were getting out of control. They didn't bother me on the top so much, but I had no idea how to tame the sides. The curls were even creeping down the back of my neck creating something beginning to resemble a kinky mullet – frightening. I needed help. I adore ringlets on other women, I've just never before had to maintain these sprouted objects. Well, except for that bad spiral perm circa '92.

With that mission in mind she started by washing my hair, which felt so, so nice, especially the head massage she gave me while rubbing in the conditioner. Then out came the scissors and the buzzer. It was a bit saddening watching the little ringlets of hair fall to the floor after they had worked so hard to sprout. In early July I was completely and utterly bald, including eyelashes and eyebrows. It amazes me to think about the progress made in just over three months and no matter how differently it grew back, I love every strand of it.

She shaped my sides and taught me how to use a wax to style it and to tousle the curly beast on top. I actually got choked up when she gave me a hand mirror to hold and spun my chair around to view my new style from 360 degrees. To an outsider the change was subtle, but to me, it made a huge difference. I didn't look like a post-chemo patient. I looked like a chic, hip, modern woman.

"It looks almost like I did this on purpose," I said, smiling.

She laughed and agreed that we are getting there. She didn't charge me for the cut. That got me really emotional and I gave her a big hug.

I walked into our front door at home completely beaming.

"Wow, what are you so happy about?" says Craig, not noticing the before and after difference. This is the same result I'd get after two hours in the salon chair and it made me laugh.

Months back Craig said to me: "I don't even notice that you are bald. I don't notice your hair. I just look at you and see you." I do my best to do the same. I think this is why I haven't worn my wig since the cruise we took late June. It's just not me and I can't get comfortable with it. But for that time and those moments it was right.

I can't get too used to this current look though. I will lose my hair yet again with the next transplant. But for now, it looks, dare I say it, cute. However, I've lost my eyelashes again and my eyebrows are barely hanging on as a result of the Bendamustine, but beggars can't be choosers. When this is all over I could care less whether I'm left permanently hairless or having developed Werewolf Syndrome if it means I'm still here.

Hair – A Retrospective of the Past Three Years: