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.

Vinblastine Through the Holidays

Angry Karin on first day back in chemo chair.

I did start the Prednisone the day after my PET Scan and overnight NYC visit. I didn’t get much effect from the 50mg of steroid. The goal was to reduce the inflammation in my body, but I didn’t feel much of anything except a harsh blow when I came off of it. I did however get an effect from the next treatment step. That Friday, December 16, I had my first infusion of a traditional chemotherapy of my treatment past – Vinblastine. I had received it as part of my frontline ABVD treatment – the very standard frontline treatment against Hodgkin Lymphoma.

The idea of a variation of the R-CHOP chemotherapy regimen had been being tossed around for a while by my transplant doc, lymphoma doc, and the lymphoma board at Sloan. It was what was suggested as an alternative to the Revlimid but one that would be a sledgehammer at me. My doctors and I were hesitant to use it as it would be a very toxic blow to me and we are all on the same page that my biggest concern is quality of life. I do not want any more toxicity than I need and I want to be able to enjoy and live my life as much as possible.

We decided to start with a single agent from that regimen, Vinblastine, in order to see if just that one drug would do the trick to melt the current disease activity. Taking just this one drug would also allow me to travel to California with Craig – What? I know! (More on that glorious trip in the next blog – it wasn’t just artistic allusion in those Counting Crow lyrics, we really did go.) My Sloan doctors were more than supportive of us taking this vacation and wanted to do everything possible to ensure that I’d be able to enjoy it.

I received two doses of Vinblastine, one each Friday before we left on our trip the morning after Christmas. I got to skip a week while we were in Cali. The upside to taking a more traditional chemotherapy drug is that I can receive it close to home. I’ve gotten the IV injection right close by, back in the familiar haunt of Hartford Hospital’s cancer center. I’m back under the care of my beloved Dr. Dailey who is working beautifully in tandem with Drs. Moskowitz and Sauter at Sloan-Kettering. I truly have the dream team of doctors. They are kind, wicked smart, understanding, accommodating, thoughtful, and 100 percent in sync with who I am, what my health goals are, and what is important to me.

It’s difficult being back at the treatment center where I started with all of the nurses, lab technicians and secretaries that have seen me from the beginning. It’s as painful for them as it is for me to see me back in the chemo recliner. But at the same time, it’s comforting. They all know my long treatment story, my family, and so much about my life. There is a high level of familiarity there and it takes away the fear of the unknown and unfamiliar. In that regard, I feel fortunate to have forged such close relationships with the team there. We laugh a lot together and I get a lot of hugs and ushered into special rooms on the fast track – the privileges of being a longstanding “client.”

At the first treatment, I was pretty angry and tired. I didn’t want to be there. Craig and I were hosting our big annual holiday bash the following day where nearly 60 people would be at our house and I was much more focused on the fun of that, not this chemo crap, and the unknowns of how it would affect me. But I did it – with the escorting of my mom to make sure that I did it. The infusion is a push IV infusion so the drug administration itself takes about two minutes. I receive Alloxi anti-nausea and Decadron steroid beforehand then a bag of fluid after the IV push. In all, the whole process takes about 90 minutes, including doctor visit. It’s doable, though certainly not as convenient as swallowing a pill at home.

The biggest side effect was constipation – oh, very bad constipation. I was blocked up all through Christmas. This is caused in some part by the drug and a big part by the nausea blocker, as it doesn’t just block one exit, but both. Trying to get things moving was not fun. I felt the normal wooziness the day of the infusion, but was pretty good after that.

The biggest reward is that the pain is ceasing. After just two infusions of Vinblastine, I haven’t felt any pain in my hips and my back pain is highly reduced. A few days after the second infusion (the day before Christmas Eve) I didn’t have to take any more pain pills. This was fantastic as neither the treatment nor the Hodgkin symptoms held me back through all of our holiday events nor our vacation. I was very tired and again, very constipated, through the holidays but things really eased up for me that last week of December.

I went to Sloan-Kettering yesterday and Dr. Moskowitz was thrilled that my pain was reduced and saw this as a good sign that the Vinblastine is working. She told me that she could cry she was so happy. We decided not to add in the other drugs of the R-CHOP or CHLVPP regimens that we had discussed and stuck with what seems to be working with as minimal toxicity as possible. She is fully behind this plan knowing that it allows me to keep my active lifestyle and it was wonderful to rejoice in that with her. It’s not to say that I feel like a million bucks ­ – far from that. But when you’re in a position like mine, the “feeling good” scale is pretty skewed. For me, this is fantastic compared to what early December was.

Happier Karin Week 2 - maybe because carolers
came around to sing for the patients at the cancer center.

Another big development is I have mild Graft vs. Host Disease of the mouth. It is likely a chronic condition, something that develops in 60 percent of allo transplant patients. This is wildly uncomfortable at times, but so thrilling! I can’t believe I’m rejoicing about it, but when I learned yesterday that the weird growths in my mouth are GVHD I wanted to do a happy dance. Dr. Moskowitz sent me over to Dr. Sauter’s clinic, where he came down from the hospital making special accommodations to see me because he was so eager to look in my mouth. All three of us were pretty psyched that because if my sister’s immune system is going after the cells of my inner cheeks and lips, it means they may also be going after the lymphoma. We’ve got some immunotherapy action happening!

My mouth had been very dry, tingly and tight for weeks. The night of my first infusion of Vinblastine, big raised white bumps rose on the inside of my upper lip and along the inside of my cheeks at my gumline. There were lines of white raised trails all along my cheeks that were scraping up against my teeth and gums. The first two nights were pretty painful and I couldn’t eat or drink much without enflaming it.

At that point, we weren’t sure what was going on. It didn’t make sense that the sores were from the Vinblastine. Customarily, it takes at least a week after chemo for it to drop blood counts enough to cause mouth sores. And these mouth sores weren’t open and seething like ones in the past. They were more actual raised growths in my mouth, kind of like under-the-skin pimples on the inside. It felt like there wasn’t enough room in my mouth for my cheek tissues as the skin was so taunt and overgrown. The growths remained for a week though reduced in severity with each day. Prescription “Miracle Mouthwash” helped to numb and soothe the areas as it’s basically like swishing Novocain around your mouth.

Before my second infusion, Dr. Dailey took a look at the mouth growths and found the whole thing so curious. By phone, my Sloan doctors did as well. There were murmurs that this could be GVHD. Of course, I had done my research as well and was convinced by the photos I found online on medical sites that this was in fact what I had.

After the second chemo infusion, the mouth irritation is all but gone. My cheek tissues are scarred and swollen and my mouth is still incredibly dry, but by day 2 in California it was no longer bothersome and didn’t affect my eating or drinking at all. This further solidifies that it is GVHD of the mouth mucus membranes – a common manifestation.

Dr. Sauter explained that the sores were going to come whenever they came. It was likely just coincidence that they flared the day I started the Vinblastine, but that the chemo is actually what is making my mouth better. In his words, the chemo is like “taking a bazooka to my immune system” and is stopping my sister’s cells from attacking my mouth because it is suppressing it. Aha! Makes perfect sense. The hope is that the chemo is working in tandem with my sister’s immune system to go after the lymphoma. He still likes the idea of doing a Donor Lymphocyte Infusion with more of my sister’s cells after a few more hits of the Vinblastine to really get the lymphoma under control. I’m considering this option and will see where my body and head are at in February after four more doses of this.

To help control the mouth irritation, I have now started a steroid mouth rinse. I have to swish it around my mouth for five minutes twice a day. It brings targeted steroid therapy right to those mouth mucus membranes where the auto-immune action is happening and will reduce the inflammation there. If all I have to deal with regarding GVHD is doing a mouth rinse for the rest of my life, I’ll take it.

I’m at the Avon Cancer Center right now getting my third infusion of Vinblastine. Hopefully it continues to do the trick. I’m currently neutropenic again so I received a shot of bone marrow-stimulating Neupogen yesterday at Sloan. Seems that it worked: my neutrophils are up to 3,000 and my bones have the aches to prove that progress. Bring on the poison; continue the healing.

Painful Signals

“You are extremely anemic,” Dr. Moskowitz said as she pulled up my bloodwork results on her computer. She looked at me with great concern and it seemed that all the symptoms I had been describing since the beginning of our Dec. 13 appointment came together and made sense. 

My pain had gotten to be extreme, waking me up writhing in the morning, preventing me from sleeping, or worse, the gravity of it waking me up in the middle of the night. It would throb and seethe mostly in my right hip – a pain that emanated from deep in my bones yet would spasm through my pelvis and upper leg. It brought me to tears and it forced me to take some of the pain medication from the bottle I had from my transplant procedure. I called my parents the night before this regular check-up at Sloan-Kettering. I knew that I wouldn’t be able to handle the train and I needed a ride in. My parents were happy to oblige – my father’s first time driving into Manhattan – and I was able to stretch across the back seat with a blanket and pillow alleviating the pressure on my painful sitting bones.

My mom and I went into the appointment and the doctor asked her customary, “How are you feeling?”

“Um, okay,” was all I came back with, knowing that my eyes said it all.

“Oh no,” Dr. Moskowitz said in her sweet voice. “What’s the matter?”

Tears started to well and I hardly had the strength to hold them back. I told her how exhausted I’d been, how I had had some kind of upper respiratory infection, which really knocked me down, how I’ve felt some lymph nodes, how I’ve been having the worst pain of my life.

I couldn’t even finish the list. My mom stepped in and told her that things have been very difficult lately, that I lost my mother-in-law, and that I was very tired, angry, and frustrated.

Dr. M listened quietly in her thoughtful way and though she kept professional, I could see that she was breaking inside too. She’s young, no more than a few years older than I am, and because of that, we have a special bond with each other: two young women facing this Hodgkin’s puzzle together.

She told me that my low RBC count would require two units of red blood cells. My numbers were so low that the transfusion couldn’t even be given in the regular day hospital. I would have to go to Sloan-Kettering’s Urgent Care Center … and would I want an ambulance ride there? She even laughed herself at that request knowing how I always walk, always, and how she teases me that I do more hiking and yoga than she does. I’ll ask her about my exercise regime and she’ll say, “Should I be doing that?”

After a continued exam she was concerned about how gaunt and tired I looked. She felt some little lymph nodes in my neck and underarm but said that they were nothing remarkable, and likely could be reactionary, like anyone’s. But I could tell she was concerned. And she was not going to let this pain go unchecked. She worked to get me an emergency PET Scan the following morning. The plan was to send me to Urgent Care, wait for the units of blood then admit me as an inpatient so that the doctors could explore what was causing such a loss in red blood cells. For my count to halve in just a week was not acceptable and was cause for great concern.

I was so comforted to have my parents with me because the added concern of anemia on top of the worries I had come into the appointment with led to sheer exhaustion. Had I been by myself I may have just crawled into a ball and curled myself in the corner. They helped me get from building to building and into that dreaded Urgent Care center where the sickest of the sick cancer patients hang out.

I didn’t understand it. I knew I wasn’t feeling well, but I hadn’t felt as dizzy or debilitatingly fatigued as my numbers were showing. Just the day before, I had hiked a mile uphill with Sam Dog to our lookout. The Urgent Care nurses drew a type and screen match for the blood and we knew it would be hours before the blood bags came back from the bank. Then, each bag would have to run over the course of two hours. We were in for the long haul: I on a metal stretcher with a mattress worthy of an ironing board pad and my parents jammed into uncomfortable chairs in our little curtained cubby with extreme patient scenarios all around us.

The Urgent Care doctor came in spouting concerns about what my low blood counts could mean and told me that they would have to admit me and hold me until they could figure out what was going on: an internal bleed of some sort? This was terrifying. He told me that they secured the first PET Scan of the morning to check into the pain that brought me there in the first place. Equally terrifying – but assuring to know that we were looking into what I already knew was going on. The Revlimid wasn’t working. To me it was so obvious that my body was having a Hodgkin Disease flare. It’s a very distinct feeling. There is a certain chills-like tingling that I feel throughout my body and my fatigue becomes a heavy blanket wrapped far too tightly. It slows everything from my cognitive function to my walking stride.

I would have to be admitted into the hospital. They were working on securing me a room. As much as I persisted otherwise and promised that I’d stay in the city, that I’d come back first thing in the morning to get my PET Scan, the doctor was not having it. Can’t I just get the units of blood and leave? Why do I have to stay overnight just to get a scan? Please, let me go. I didn’t have a chance. They couldn’t leave me unmonitored with such anemia. They needed to find the cause of the blood loss. The idea of a night in the hospital was mortifying.

I changed into the requisite hospital Johnny and curled up with the paper-thin pulpy blanket they provided. Those Johnny gowns couldn’t be thinner if they tried and they always hang at the perfect length for the chest pocket opening to be right at nipple level leaving my booby the chance to unknowingly peek out. The “sleeves” never button up right and the back ties either slip apart at the most inopportune times or knot up so tightly that it takes some patient Girl Scout ingenuity to get out of the thing.

I endured more needles and blood draws and begrudgingly rolled over for a rectal exam, the lubed and gloved fingers of a stranger entering me and searching my bowels for a sample of stool or evidence of an intestinal tear. I had no strength and the feeling of defeat that once again I was to be poked and prodded like an animal was disheartening. I locked eyes with my mother with a look of pain and longing to be anywhere but there.

More time passed and my mom persisted with the nurse that my Complete Blood Count (CBC) needed to be rerun. That had been Dr. Moskowtiz’s request as well and we all assumed that it had been done. But when questioned, for some reason this had never been ordered. After some push, the doctor and nurse in charge of my care agreed to ask the lab to recount my blood levels. We were still waiting for the bags of blood from the bank anyway. I also still couldn’t eat in case by chance they had to do a test that required fasting. It was the evening by this point.

A few minutes later, we heard the ER doc on the phone at the command station saying: “I can’t believe it. I’ve never seen this before.” He pushed back the curtain to the cubby where my parents and I camped and told us that my red blood cell count was 9–far from the 5 that had registered earlier that morning. I was still slightly anemic, but that was normal for me. In fact, I was nowhere in the danger zone. The ER doc, with his heavy Russian accent, told me that Dr. Moskowtiz was on the phone and wanted to speak with me. I shimmied to the central nursing station in my non-slip socks with my fleece zipped over my risqué hospital gown and leaned over the counter to grab the phone and chat with her.

She was shocked and so apologetic that it took them so long to identify this issue. She was under the impression that they had verified the numbers hours earlier. She explained how rare it is to have just one number be out of whack – how if a sample is faulty, usually all the blood counts are unmistakably incorrect. At this point, all I was concerned with was getting outta there. She confirmed that yes, I wouldn’t have to stay overnight in the hospital, but that I would need to return in the morning for a PET Scan. Even though my blood cell levels were decent, I was still having Hodgkin symptoms and a lot of pain.

My parents and I were able to secure at room at one of our old stomping grounds, the Miracle House, and we spent the overnight in the city, unplanned. The organization and the accommodations they provide truly live up to the “Miracle” name. My parents were troopers. We visited CVS for essentials and a diner for a late dinner of French toast and hydromorphone for me. I slept no more than two hours. I was up all night tossing and turning with pain and worry. Half a book and episodes of Conanand Seinfeld couldn’t make it go away.  

We were up and in a cab crossing through Central Park from Hell’s Kitchen to the Upper East Side by 7:30am. Fingers were crossed that my PET Scan appointment was kept for me even though I wasn’t an inpatient as it was initially booked. There were no problems. It wasn’t until I was in that scanning tunnel, arms overhead and rolls of towels tucked alongside my head so that I wouldn’t move that then I fell asleep. I was overwhelmed, exhausted but comforted by the heated blanket they draped over me before starting the test. It’s a sad testament that the whir of a PET Scan taking 3D pictures of my body was this adventure’s magic sleep trigger.

I got a call from Dr. Moskowitz that evening. I listened and took notes on a scrap envelope at our kitchen island. Craig stood by reading over my shoulder. I wrote:

Lymphoma is growing.

Obvious Revlimid not working as we hoped it would.

Areas on right hip, sacrum, and vertebrate lighting up more significantly.

New hot spots in pelvis, left hip and abdomen.

This is cause of pain.

It is in my bones and on my bones.

Don’t start 2^ndcycle of Revlimid pills.

Stronger chemo needed to melt disease.

It won’t cure me, but will get things under control - will make me more comfortable.

Start prednisone steroid immediately.

I knew. I could feel every bit of it increasing in anger, flaring against me. I knew that the war inside was getting heated.

[   “It’s been a long December and there’s reason to believe that maybe this year will be better than the last. … The smell of hospitals in winter and the feeling that it's all a lot of oysters, but no pearls. If you think that you might come to California, I think you should.” – Counting Crows   ]

So we did.

Biopsy #4 and Revlimid Start

It's been a while and much has happened. I had the biopsy procedure of my right sacrum performed at Sloan-Kettering. The pathologists have read the sample and confirmed that yes, there are the telltale Hodgkin Lymphoma Reed Sternberg cells present. It's the same disease trying to flare again, now most certainly in my bones. This wasn't a surprise to anyone, but it does help the situation to know we have some hard pathology evidence of the disease we're trying to go after. 

The biopsy procedure was not fun, this is certain, but it’s over, and I was fine after just a couple of days of swelling and soreness in the area. There were many hours – way too many hours – spent waiting and fasting before the procedure. I had to fast from midnight the night before until after 4 p.m. when I came to from the twilight sedation. It was a long day in the city. The surgeon went in with a needle and bone hammer and extracted a piece of the bone and marrow where disease looked to be involved, pinpointing the area with live CT Scan technology. The surgical team gave me medication to relax me, but I was by no means asleep. I played Bob Marley through my headphones and welcomed the anesthesia nurse’s hand that rubbed my arm throughout the most painful moments.

Then came more days of waiting: for results and a plan. Then came more traveling to NYC to solidify that plan, including a solo trip by car and train – liberating! I’ve done an incredible amount of thinking and contemplating and talking out options with my family and medical team, but mostly with myself. I had to ask the really difficult questions to my doctors to be able to get things into perspective here. They’ve been realistic and gracious and I could not be more appreciative to have the individuals that I have in my corner.

It took me a few weeks to get to this point, but right now, that CT Lottery tagline: “You can’t win if you don’t play” keeps coming to mind. So does the Wayne Gretzky quote: “You miss 100% of the shots you don’t take.” There are still shots for me to take and I can still win, but I have to play in order to do so. Playing will not be easy and the idea of more treatment is deflating, but it beats the alternative. To be very blunt, if I don’t play, I will die. This lymphoma will begin to become very painful and it will kill me.

In black and white, the risky treatment might kill me; the cancer willkill me. I’ve decided to hedge my bets. Because there are areas of cancer on my vertebrate, it eliminates my hope to be able to ride this out for a while longer, to “wait and see”. If I want to maximize the effectiveness of my current options, I need to act now. There is still hope for this donor transplant process to work – we just have to poke it a little bit. 

I am reluctant to have more toxic, traditional chemotherapy and have exhausted most of those options anyway having been so heavily treated. I do not want to send my body into tremendous trauma again, and because of constant scientific developments I hopefully will not have to.

Gratefully, there is a promising option and I have decided to embrace it. I’ve started a targeted therapy drug, Revlimid (also known as Lenalidomide). It is an FDA approved drug used primarily against Multiple Myeloma. However, there have been recent and ongoing studies of its efficacy against refractory Hodgkin Lymphoma – even after donor transplant. It has shown some promise in these studies, and I’ve connected with a couple of other refractory HD patients who have had great disease reduction results with it. The best part is that because it is a targeted therapy, the side effects are said to be minimal. So far, this has been true. I’m a little more tired and more easily winded, but that seems to be all.

The drugs were delivered via FedEx to my door. It is an oral pill that I have been taking once a day and will continue to for the 21 day cycle, one week off, then a second cycle. After two cycles we will check a PET Scan to see the progress that the therapy is making against the disease. Because this pill is such a "light," targeted treatment I can be on it for a very long time if needed. It's not like toxic chemo that a body can't handle for prolonged periods.  

In some post-allogeneic transplant patients, Revlimid has actually pushed them into some mild Graft vs. Host Disease proving that the drug may actually have a stimulating affect on the immune system/donor lymphocytes. This possibility makes the therapy even more ideal because not only will it be going after the small amount of lymphoma I currently have, but it may also ramp up my newly donated disease fighting cells: a win-win.

The hope is that the Revlimid will reduce the disease tremendously and will allow me to go forward with the Donor Lymphocyte Infusion with a super blast of my sister’s disease fighting cells. That procedure of course comes with the risk of mild to severe Graft vs. Host Disease, but also the only promise for long-term remission. I’ll revisit that decision when we get to that point. Right now, we’re working on getting the lymphoma under control while keeping my quality of life as high as possible.

Life has been very emotional in many respects – tough moments but also beautiful moments. I am feeling mostly well and I can do most everything again. I’ve had nearly five months without chemotherapy treatment and much healing has happened during that time. The freedom and confidence that allowed has done wonders for my spirit. My limitations will increase some again once this new drug begins to affect my blood counts, but it shouldn’t be anything extreme. I’ll continue to see my lymphoma doctor at Sloan-Kettering once every other week and will have blood work drawn locally at Hartford Hospital’s nearby cancer center every week.

Yes, treatment continues, but my life does too. Living is my focus now more than ever. No more being a full-time, incapacitated patient. I am taking full advantage of my renewed strength and mental capacity. I am still going back to work full-time from home as planned. I start tomorrow and I can’t wait to delve into the projects at hand. I'm working out with the LIVESTRONG at the YMCA program. I am also flying to visit my sister in Las Vegas for a few days and very much look forward to seeing the desert and mountain landscape out there: one night we’ll be camping in the Valley of Fire, another we’ll be taking in the Vegas strip. Maybe I’ll just put it all on red? 

The Breakup

Sounds strange, but good news can be difficult to take. In a way, I feel a loss. Having aggressive refractory disease will do that to you. Whenever good news is delivered about clear scans or positive movements forward, I find myself receiving it with a skeptic’s embrace. I’m thrilled to no end about the condition I’m in right now, but it’s hard to quench the worry that it isn’t a permanent condition. The many, many, many times the disease has begun to retreat only to figure out its attacker and come back within just a few weeks has left me with scars of hesitancy that I don’t know will ever heal. I’m like a timid dog just let out of my very small cage after years of abuse. I need to retrain myself to trust and accept that this battle may actually be fizzling – a slow burn-off, but fizzling into health nonetheless.

I was so naive in December of 2009 when after six months of ABVD treatment against the Hodgkin Lymphoma, Craig and I threw a “Kicked Cancer’s Ass” party. There was no reason to think that I hadn’t. My November PET Scans showed a full response – and a vast majority of Hodgkin patients are done at that point. In January when a cough developed and my chest felt like an elephant was yawning and stretching inside my sternum, I knew the celebration had been premature.

It’s hard for me to wrap my brain around the fact that the treatment I’m undergoing right now is a constant therapy. It’s not drugs and poison that are haplessly trying to seek and destroy cancer cells and my good cells along with it. That part is over, but not so easily forgotten. I’ve been burned so many times – 24 different chemo drugs in 9 combinations. Each one worked initially, but the cancer ultimately proved to be too resilient for any to provide a forever cure. But unlike those, this immunotherapy is my cure and I look forward to that two-year mark when I can say in great confidence that I am in long-term remission. For a long time I’ll still be leery, but at least now, with negative side effects diminishing daily, I can live my life without the physical disabilities weighing around my neck like a noose. That rope has been cut.

But again, there’s that unexpected feeling of loss. It’s like an unrequited relationship with an ex-lover. Hodgkin was destructive and abusive but somehow we kept finding each other and I kept finding myself falling back into its strangling arms. I’d dig my way out and think I’d moved on then he – it – was back with a vengeance, overtaking me. There was nowhere I could hide so I had to dance with the cancer, to adapt with it and work with it in order to get out of the relationship alive. I had to give tough love back until we could find common ground amid the battles and the tender moments. Hodgkin needed something from me and I needed something from it. I hope it is as satisfied as I am right now and that we’ll forever be able to live in harmony and peace. I’ve been running toward this peace with all my energies, now I’m happily running toward peak health with that peace I’d been seeking finally right there within my heart.

As detrimental as it was to my entire being, cancer, its treatments, and the very small world it put me in, are what’s been familiar for so long now. The aches are familiar. The fatigue is familiar. The nausea, the mood swings, the foggy headedness is familiar. What’s not familiar is being able to take a deep breath without coughing or to be able to crack a joke with perfect timing or process a scenario with ease, confidence and clarity – comforts I haven’t known in a very long time. I didn’t realize how much Hodgkin was holding me back. I love how free I feel right now. I love that all parts of me feel aligned again, a truly miraculous sensation. What’s even more miraculous is that I’m only 46 days into this forever healing. For the first time in more than two years I’m not getting better only to gear up for the next toxic therapy challenge. If I feel like this so early out of the gate, what will it be like years from now? I imagine it to be nothing less than bliss run rampant.

Cancer is and always will be a part of me in some form in the theoretical and the biological sense, but what doesn’t have to remain is the baggage that it carries. A fuzzy, painful, uneasy world was my world for a very long time, but I fell into its syncopations because I had no choice but to absorb the punches. Now I’m introducing myself into an entire new world, a world in which I’m punching back into the air with zeal. It’s not like the world I was in even before cancer: it’s even sweeter, more tender and graceful, and more inspiring by the moment. I would not realize this had I not seen what hell looks like. I would not have known the breadth of my capabilities to move, feel, think, create, and connect with others on this wild ride we call life. A life that to me is no less than heaven.

I know my relationship with cancer is not over, but I hope we remain friends. It will take a long time to heal from the forever imprints it has made on my being – a tattoo inked during a 29-month bender. I will hear, feel or taste something in the air and like a cheesy romance it will take me right back to our tumultuous times together – times of rawness a Hollywood script can’t give justice to. It’ll be just me and that trigger and the rest of the world spinning out of control around us. It can be the scent of an alcohol wipe, the sight of a pulpy blanket, the twitch of my oncologist’s eye.

The memories come flooding out of the abyss. I am in slow motion and completely transfixed with jarring flashes of PET Scan hot spots, bloody gauze, painful needle sticks, and mustard yellow-colored vomit buckets. I’ll find myself itching at glue left on my arm skin from the endless strips of medical tape – glue that isn’t there. Everything around me spins at dizzying speeds and there I am, unable to move, unable to see past the torture of my tormenting lover.

Then it’s over and I breathe and I see my scars in a new light. They are tattooed reminders of that bender that yes, I roared through, but understand that I’m still sobering up from. I’m stumbling back into clarity, still nursing the hangover, still a little buzzed.

“If you’re going through hell, keep on moving. Don’t stop now. If you’re scared don’t show it; you might get out ‘fore the devil even knows you’re there.” – Rodney Atkins

Blur

I'm not exactly sure what happened, but I think that I lived in Houston, Texas for 30 days, wrecked my body, and am now home on my couch in Tariffville, Connecticut courtesy of a corporate jet and Lincoln Town Car. The month of April has literally been one hazy blur. We arrived home on Wednesday night to our calendar on the fridge that was still turned to March. Craig and I could not for the life of us remember what we did during the days leading up to leaving for Houston, how we got there, nothing. Everything happened so quickly.

I'm disappointed that I did not write more from Houston, but I was so incredibly busy or far too tired to get to it. I know that sounds crazy, but I couldn't get myself to do it. I do have many, many story nuggets that I plan to get to writing now that I can breathe a little bit. But for now I'll do a broad-brush review to get up to speed.

Most importantly, I became an aunt for the second time two days ago. My sister-in-law delivered a beautiful, healthy baby girl: Anna Gisele. She now joins my sweet, sweet nephew, Jake, who somehow is suddenly going to be two years old in August. I am so happy for Eric and Rachel and their newest addition: the news of their good health and sheer happiness eliminates all of the difficult times in my life. I cannot wait to meet her. Before we left for Houston, Craig and I got in some Jake time and his smile and baby language are the best medicine. Together with Anna there are going to be many heart melting moments to come this summer for sure.

After the initial whirlwind of activity in Houston settled, things got pretty tough for me. This was right at the time when my parents arrived. They were with us for the last nine days of the trip. It was really nice to have them there to mix things up and bring a taste of home. I felt badly at first that I was not up to being a gracious hostess and it took me some time to realize that that was not why they were there. Even after nearly two years of being a cancer patient, I still do not do well with accepting help and support. It is a tremendous struggle for me.

Once I accepted that my parents weren't there to sight see in Houston, but rather to just be there for me, I realized that it was okay for me to nap or not want to go out and explore. I am so fortunate to have parents and a husband that care about me so much that they'll sacrifice everything to do what I want to do. Sometimes that made me lash out because I want them to do what they want to do. It's a difficult balance of being extremely grateful and also not wanting to be a burden to anyone. I constantly try to think about what it would be like to be in my caregivers’ shoes and I'd want to be there right with them as well – even if they were just a blob on the couch as I was much of the time.

My mom gave me fantastic back rubs and introduced me to Bananagrams – I don't know what took me so long to discover that amazing game! We played many rounds of that and hung out in my parents' apartment watching silly TV once I finally let my guard down some. My parents rented a car, so my Dad became my chauffeur around Houston, which was helpful to run errands and to get places more easily as my energy had been completely zapped. This allowed us to check out the Houston Museum of Natural Science – including its awe-inspiring butterfly garden, the Houston Museum of Fine Arts' Sculpture Garden, the Japanese Garden in Hermann Park and a scrumptious downtown Farmers' Market. The city really does have so much to offer, much of it right up my alley.

We did get in a trip to Galveston, TX, on the shores of the Gulf of Mexico as well. It is only a short hour-long drive from Houston – Papa behind the wheel. I loved that place. I could have rolled around in the waves like a pig in shit all day long. The ocean water was the perfect temperature and the waves were strong and rolling. The four of us enjoyed some Gulf seafood and took a Duck Boat tour around the island and right into the bayside water as we learned about the history and goings on of this very unique island.

Despite the incredible wind, Craig and I plopped on the flour-fine sand of the beach while my parents did some further exploring. I spent most of the time in the water by myself diving in and out of the crashing waves. The salt water helped to clear my blocked nose and ears and the pressure of the wave undulations felt so good on my back – Mother Nature’s massage therapy.

Easter was spent mostly on the couch or the bed in our apartment. The Easter Bunny did find us there in the form of a bag of candy left outside our door and a beautiful bouquet of flowers that came from my Gramma and uncle back home. Plus, the adorable cards that arrived for the holiday and otherwise. After much internal (and external) debate, we all did make it out for Easter dinner in Rice Village – a Houston neighborhood that I came to love, which is adjacent to Rice University. We ate at a fabulous restaurant called Benjy's. The food was so good that I actually ate half of it and thoroughly enjoyed seconds for lunch the next day.

I love to travel and I love to see new places but there is a difference between being on a chosen vacation and being in a place far from home because you have to be there for treatment. We made the most of every moment that we could, but we missed the comforts of home badly, especially at night when I was remiss of distractions. I missed my Sammy dog tremendously. I did a lot of crying and a lot of yelling. I had many breakdowns and I know that this is because I didn't have my normal coping mechanisms with me at my disposal.

It's at times like this past month that I realize the things that really matter to me in my life. I missed my family and friends. I missed my alone time. It bothered me tremendously to not have nature and woods around me. It bothered me that I couldn't write and that I couldn't go to yoga class. I missed walking and hiking and the Farmington River. I missed having the basic necessities to cook our own healthy meals. I missed recycling. I missed tasty water out of the faucet. I missed quiet. I missed my pillow and bed.

After coming back from San Antonio, exactly as predicted by my doctor and nurse, all of the crappiness set in during week three. I got incredible backaches and tenderness and the fatigue became extreme. I had only a few hours of energy in me each day before I had to take a nap. The record heat and humidity in Houston did not help. Heat in the 90s, humidity 95% some days. I love, love, love the sun and warm weather, but the humidity made my already reduced breathing more labored, and I found myself often in the sanctuary of our air conditioned apartment, which is very unlike me. But the extreme temperature was too much for my body to handle. This worked out okay though because both my parents and Craig run hot and I was actually on the same body thermometer as them for once.

Appetite has continued to be low and I’ve dropped weight. I’m working hard at getting food down, but it’s certainly a chore. I have constant dry mouth. With barely any saliva, it feels like I’m walking around with cotton balls stuffed in my mouth, which takes away the appeal of food. Certain areas of my tongue are also very sensitive to harsh tastes and make it difficult to eat. However, I’ve still avoided any full-blown mouth sores. My lips are another story, though. They are swollen and cracked and in the mornings, especially, I have Herpesesque growths on them that hurt like a mo’ fo’.

On top of the chemo side effects, I caught a cold something nasty, or it's allergies, no one knows. But in any case, it still hasn't quit. It came on with a sore throat in San Antonio, which left but settled into a very rumbly cough, plugged ears and drippy nose. My parents and Craig had to put up with a lot of coughing fits around them. I saw a nurse practitioner in the "fast track" team at MD Anderson, who after ruling out a virus with a sinus wash, kept me on the antibiotic and told me to treat it symptomatically. The symptoms are still persisting, but have gotten better with rest and my home environment.

The good news is that I made it through the entire month down there without ever needing blood products and I required only one shot of Neupogen. I got this really because I asked for it as I did not want to be off of my pills for any more than needed. The schedule has worked that I've had to take a break from the pills for 3-4 days every other week. I've been able to tolerate the other side effects enough to avoid longer breaks. However, the drugs knack for knocking my blood cell count down is really nothing that I have control over, so the Neup shot helped my white blood cells soar back up (in one day) to far surpass the required ANC level of 1.0.

On Tuesday I met with Dr. Younes and Amy again to go over my first month. They were both impressed with how well I did and said that I was able to keep more drugs down than expected. They are still really exploring how much is tolerable and suggested. There are only 23 people that have been on this combo drug study and only eight of them have Hodgkin Lymphoma. I’ve kept diligent track of the symptoms I’ve experienced in hopes that it’ll help them better asses this drug tolerance and efficacy.

The meeting with the doc was very lighthearted. Both my mom and Craig came with me and we had a lot of laughs with the medical team and they gave me the thumbs up to continue treatment back home and get my blood cell levels checked locally with Dr. Dailey at Hartford Hospital. I felt much more at ease meeting with them and hearing that I’m tolerating the drugs well. I tend to be very hard on myself and outside assurance that I’m doing okay is very helpful to me.

To make the travels back home to Connecticut even sweeter, we scored a ride with the nonprofit organization Corporate Angels Network. The charity sets up cancer patients and their caregivers with rides on corporate jets that have open seats on a given trip. We lucked out in that one was going from Houston to Jersey City. They even set us up with a Lincoln Town Car driver from Teteboro Airport right to our door in Tariffville. These were both donated services. The travel effort and financial burden it relieved were instrumental. The experience of traveling in sweet, comfortable rides with incredibly generous corporate execs wasn’t so bad either. They were kind and fun and so, so accommodating. We felt like royalty.

When we arrived home, we were met with balloon clusters and vases of bright flowers in every room of our house. There was a big, adorable “Welcome Home Craig and Karin” banner spread across our dining room table and our refrigerator was filled with all of the essentials. Our neighbors and their kids had been busy. Their incredible thoughtfulness brought huge smiles to our faces. Our smiles continued when our friend Melissa delivered Sammy back to us and we had a good cuddling/petting/tail wagging session. Then all three of us crashed into a sound sleep in our respective couch positions.

I haven’t been doing much besides sleeping since. I slept for 12 hours the night we got back, was up for a few, then back to bed until Craig got home from work. Thursday night was particularly rough. I woke up in the middle of the night with an intense headache. The pain was so bad that I stumbled out of bed and vomited my brains out. I hate, hate vomiting. This is only the third time I’ve thrown up in two years of treatment. I was barely even conscious and can’t believe that I made it to the toilet. Craig woke up to the noise and found me hugging the thing with my face down on the bowl.

I got back into bed with a cold compress on my head just in time for the 4 a.m. live coverage of The Royal Wedding, so at least that was a plus. The nausea and headaches persisted into the next day. As difficult as it was for me to do, I e-mailed my trial nurse to tell her what was happening and ask for a break over the weekend. I can tell without even checking that my counts are low as my energy level is so shot. She wrote back: “Absolutely.”

Basically, the ball is in my camp with this clinical trial and I need to listen to my body and speak up when things get to be too much. I know my body intimately and my medical team wants the best for me. We all want to give the drugs the greatest chance to work, but also don’t want to kill myself in the process. I’m hoping that on Monday I’ll be able to get back on the treatment regimen. Right now though, my body is telling me–in no shy terms–that it needs a break from the toxins and the travel and requires a ton of sleep. I am listening.

Some Houston Pix:

Houston 2

SGN-35 Treatment Two

I got through the second infusion of SGN-35 without blowing up or caving in and for this I am grateful and happy.

My mother accompanied me to Sloan-Kettering this time around. My appointment with the doctor was early – 8 a.m. on Thursday so we trekked into the city the afternoon before to avoid wee morning hour travel. My anxiety built for the few days leading up to yesterday. Wednesday I did my usual dragging feet routine. I slept until 9:30 a.m. (very late for me) and found many, many things to do around the house that morning. I didn't get into my car to drive to my parent's house until the last possible moment. I was procrastinating the inevitable I suppose ... the knowingly placing your hand on a hot burner phenomenon.

The train ride in was uneventful. As I usually do, I decided to factor some NYC culture into our agenda so that the trip wasn't solely medically related. I like to have that balance and to take advantage of the time that I get to be in New York City because soon, I'll be confined to my hospital room for many weeks and will be restricted from those things that I love – good restaurants, theater, museums for a very long time. But that is not now so I must live and love them now.

After checking in at Miracle House, we walked to dinner at a Hell's Kitchen hole-in-the-wall Thai restaurant my Manhattan guru Lisa recommended: Olieng Thai. There are just seven tiny tables and the staff is sweet and so friendly. The walls are covered with affirmations, quotes, romantic musings and food recommendations shared by diners who had scrawled with neon pen on the mirror lined wall. My mom enjoyed stir fried veggies of all sorts while I warmed my insides with a fragrant bowl of yellow curry with sticky rice to soak it up with. We topped it off with green tea and shared a fried ice cream – what an intriguing, indulgent combination that is!

In my chemo procrastination/denial stupor I had come across reviews for a play on Broadway called "Time Stands Still," which is running for just another couple of weeks. I fell deep into reading all the reviews, about the story line, the Pulitzer Prize-winning playwright Donald Margulies, the esteemed four-person cast of award-winning actors, including Laura Linney and Christina Ricci. It lived up to its reputation.

I treated for nosebleed seats. We were in – literally – the last row of the theater at the very back of the rear balcony among all of the college theater students, but this truly did not hamper the experience. To see a show of that caliber for only $34 was completely worth the four flights of stairs we had to climb and the initial vertigo we experienced. But for real, the view was completely unobstructed and we were both immediately absorbed in and enthralled by the story. It chronicled a photojournalist and freelance writer forced to leave their adrenalin driven lifestyle of covering wars, genocides and natural disasters due to mental and physical injury and how this drastic change to "mundane" life effects them as individuals and their relationship. It was multilayered, intricate, delicate and so very real. I most certainly could draw some parallels to my own life and some of the lines Laura Linney's character, Sarah, delivered were ones that have come out of my very own mouth: i.e. "Don't touch me. I can do it myself!" as she's trying to manage with a brace on her shattered leg.

As an added bonus to an evening of great theater – the kind of story that I'll ponder forever – we got to meet some of the actors afterward. We just happened to stumble on a crowd and barricades at the backstage theater exit and saw both Christina Ricci and Laura Linney leaving in their street clothes after the performance. Each signed autographs and posed for some pictures. I felt fortunate to have the opportunity to tell Laura Linney how much I enjoyed her moving performance ... and now I have her autograph on my Playbill and a picture my mom was able to snap of her giving it to me. Now I must watch her Showtime series: "The Big C" about finding the humor in a cancer diagnosis.

All of that excitement did wonders for squelching my anxiety about the next morning and for tuckering me out enough to fall asleep despite being in an unfamiliar twin bed on wheels with the even more unfamiliar sounds of car horns and rumbling buses 10 floors down outside our window.

Thursday morning inevitably did come and I woke surprisingly refreshed to the awful sound of my mom's cell phone alarm. Everything but the banana I had shoved in my pocket made it in one piece across the city to Sloan. Nearly immediately after I had my CBC done and vitals checked, we were called in to see the doctor. No wait at all. This is one of the benefits of taking an early appointment.

I presented my nurse and Dr. Moskowitz with the sputum I had caught for them in the sputum collector they had provided for me last time around. It was neon green and at once crusty and tissuey. I told them the color was an added bonus as it presented itself during my sinus infection. But in all seriousness, since my second relapse in July, I've been coughing up very strange objects (what I imagine to be fried lymph nodes). They come from deep in my chest and out my nose after much effort or sometimes just fall into my mouth. They always have the same shape and characteristics – nothing like normal phlegm. On the last visit, the doctor was intrigued by this and asked me to bring a sample. I was happy to be able to produce and am eager to hear what the microbiologists analyze it as. I have another empty spewtum cup for the next encroachment. This time it will go to the pathologists to analyze. How's that for excitement?

I also filled them in about the strange symptoms that I've been having: the left side body heaviness and occasional pulsing and awareness of the blood coursing through my veins and into my heart on that side of my body. It all goes into the notebook. The doctor said how happy she was not to have heard from me over these three recovery weeks as that meant that I was doing okay. She was also impressed to hear about the amount of activity I have been doing and told me not to get frustrated with myself. The words that really resonated were: "Karin, we're not giving you anything that is going to make me feel good" and I instantly remembered that even though I have my hair and I don't have the intense side effects of chemos of old, I am still on chemotherapy.

My blood counts were lower than I had expected. My white blood cell count is only 2.5 so I still have to be very careful to stay away from sick people. My hematocrit and hemoglobin are also low – hematocrit is only 29.6 (normal 34-46), which means that I'm still anemic and explains further why I've been so tired. There is still a massive battle happening inside my body and I can't expect to be feeling stellar. She's good at helping me to manage my expectations; at helping me be realistic but no less hopeful and expectant of what I can and will accomplish.

We talked about next steps. I have a PET Scan scheduled for two weeks from now: Feb 3. It will reveal if (that) the SGN-35 is working. Dr. M told me that it would be a surprise if the disease is completely gone after just these two rounds. Not that she was being negative, but she didn't want to get my hopes up. In the drug's studies, it has shown to take more like 4 cycles to eliminate Hodgkin's presence in patients. This test is just a test to make certain that there has been some reduction.

The infusion went well and the wait was much shorter than normal. My mom and I played Word Scramble on her iPhone while the drug dripped. My nurse was young, sweet, and very lackadaisical about SGN-35, which she was very familiar with. That helped to calm my nerves about having any reactions. And, as always, once it hit my veins and nothing happened, I could unclench my jaw. Forty-five minutes once all was said and done and we were through.

We packed up our things and were on our way off the floor when suddenly my breathing and chest were a little tight and I kept going into coughing fits anytime I tried to take a deep breath. I didn't want to go back into the infusion room but I also didn't want to leave the hospital in case something bad was happening to me. Despite my mom persisting that I go back in and tell the nurse, I was snippy and noncompliant and just wanted to get out of there. However, I wasn't stupid enough to leave the hospital.

So I found a chair in the lobby and sat. I breathed and people watched until the coughing ceased, which didn't happen until up popped another little organ into the tissue I was blowing into. After that passed through my inner tubing, things seemed to open back up. As far as normalizing my breathing, I was just short of needing a paper bag. But I knew in the back of my mind that I had gotten myself into a self-inflicted tizzy and that I could also get myself out. Nothing was wrong. I was just being paranoid that something could be.

After about 15 minutes of telling my poor mom to stop looking at me and asking if I was okay, it passed and we were finally in a cab to Grand Central and on the way home via a different train line to a different station because I could not wait the nearly two hours for the next train to Wassaic, NY, where we had left out of. I had some major ants in my pants and all I wanted was to GET HOME. Luckily my sister is flexible and picked us up in another part of the state – she could probably tell I was on the verge of a breakdown. I like to think that I'm pleasant to be around most of the time, but I don't know how they all put up with the brattiness that can kick in when I occasionally lose it.

Once the train lurched out of Grand Central and I sipped a little Dr. Pepper (odd how this non-soda drinker craved that) I felt better. Much of the ride was passed marveling at a big bellied man in an oh-too-worn white undershirt one cart up dancing in the vestibule like nothing I've ever seen. Killer moves. He was r-o-c-k-i-n-g out to whatever was pumping from his earbuds. I think he was singing as well, but we had the insulation of the cab doors between us to muffle that – probably a very good thing. That vestibule was his stage and he took full advantage of its space grapevining from one side to the other. He even incorporated the poles into his routine like a daytime stripper. It made me smile hard.

Now here I am back with Sammy and Craig and even more snow today. The sun is out and we had a beautiful, albeit tough walk in the additional six inches on top of the two feet we already have. I'm looking forward to seeing some good friends tonight but more immediately, to a much needed nap. I'm very exhausted, but very, very happy to have made it through yet another treatment.

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 ... .