Wednesday, March 23, 2011

Houston, Here We Come

"From chaos comes confusion, and from confusion, clarity."

Looking at these stages I believe that I've been able to remove myself from the chaos and am now deep into the confusion. Clarity will come in time. It's only been a week since I found out that the disease is making progression rather than regression but it feels much longer. I lost all concept of time and space for a little while there and am just now coming out of my recluse.

Craig and I traveled back to New York last Thursday, took in the massive NYC St. Patrick's Day Parade, the new play "Good People" by one of my favorite playwrights, and had a long meeting with my lymphoma specialist at Sloan, Dr. Moskowitz.

She gave us further information about my disease status and pulled up my PET Scan pictures so that we could view the cancer in raw detail, visualize what it is that I'm working on eliminating. It has returned in my chest – the same spot to the right of my trachea just above my heart, my sacrum, pubic and hip bones, my back and a rib. As hard as that is to swallow, my disease is not considered "high volume" at this point. Though, we need to put a stop to the growth.

Dr. Moskowitz suggested I consider a clinical trial being hosted at Sloan-Kettering for PLX3397 as well as as a clinical trial at MD Anderson in Texas that is combining Panobinostat (LBH589) with Everolimus (RAD001). Although each of these drugs is in very early development and even more immature in their use against Hodgkin's lymphoma, there is a bit more data associated with the MD Anderson trial therefore that seems, at least right now, to be the best place to start. She has secured an appointment for me with Dr. Anas Younes, a world-renowned specialist in novel therapies and clinical research for lymphomas and the lead on this particular study.

So, Craig and I are hopping a plane to Houston, Texas on Monday afternoon to see what we can glean from this doctor's expertise. Who knows, he may suggest a completely different protocol or trial once he looks at my specific case. All three drugs that have been at the top of the list are oral chemotherapies which target different proteins suspected to be active and present in the growth of Hodgkin lymphoma. Unlike SGN-35, which is very close to FDA approval, these drugs are only in Phase I or II trials meaning that scientists are still trying to figure out the highest safe dosage and the drug's efficacy.

I am incredibly impressed with the amount of investigational drugs that are out there being tested against refractory Hodgkin's. That gives me a lot of hope for options and that "key" that I am seeking, though of course it is a little scary not having a lot of data on their safety in humans. My biggest hope is that the first one we try is the one that gets me into a solid remission. This is why this initial decision is so important and why I've been pouring over any information that I can get my hands on.

The Hodgkin lymphoma community (the refractory one especially) is a close knit one and I feel so fortunate to have so many people out there willing to help me out with this decision and connect me with the smartest minds out there. There are very helpful lymphoma web forums, Facebook pages, and fellow patients' blogs. I've made many friendships along this journey with others going through similar experiences and it really set in this week how much they have my back. Before I even got to the lymphoma board, others were talking about my case and asking for suggestions of where to point me.

Fellow Hodge warriors and stem cell transplant survivors have forwarded my situation/case to their oncologists, offered to connect me with appointments, spoke with me by phone and extensive e-mail conversations, sent me helpful links and encouragement. Big, big thanks to Bekah, Tiffany, Steve and Jen, Nancy and many new people that I've "met" from all over the nation that have taken the time to contact me about their experiences with these trials and transplants. Ethan Zohn, my friend and Survivor: Africa winner has been absolutely instrumental pulling every connection of his for me filling my inbox with recommendations from lymphoma specialists from LLS, Livestrong, Stand Up 2 Cancer, National Institutes of Health, Gabrielle's Angels and more organizations.

I also met today with my local oncologist, Dr. Dailey, who has been with me from the beginning. It was so helpful and calming to hear his thoughts and careful consideration of my situation. He is supportive and thoughtful in his gentle guidance. I realize how fortunate I am to have so, so many advocates.

And it's not just those who have provided medical advisement over this past week, but once again, the incredibly outpouring of love and inspiration and encouragement from friends, family, and complete strangers. It is that huge web that keeps me afloat especially when I am completely tapped out of strength myself. I feed off of that energy from others and am so grateful for that support which has stood the test of endurance over the hills and valleys of the past nearly two years. You help me to climb back up again.

Recovery from this set-back has been difficult, but I'm pretty sure I'm on my feet again. Much credit goes to my husband who I've now started calling "Clarity Craig" and of course Sammy who's snout is there nuzzling my arm to pull me out of bed every morning. And of course, my parents who swept me away to the Connecticut shore for a walk along the water and the first lobster roll and swirl soft-serve cone of the season.

My mental capacity is pretty tapped. My body is very tired. I can't be on any kind of steroids to alleviate the inflammation, sweats, cough and back pain that I'm having from the cancer growth as a course of them might preclude me from certain clinical trials. I do not want to limit my options any more than they already are. I'm coping through breathing and yoga, getting what sleep I can, and the assistance of a new seed-filled aromatherapy microwaveable heating pad that has become my security blanket.

I get weepy and I get angry and I get frustrated depending on what time of day it is. I cry often and haven't yet been able to talk about things without developing a huge lump in my throat. It probably goes without saying that there are so many lingering questions about the best course of action that it is tremendously overwhelming. It feels like I've fallen down a narrow dirt hole with my arms stuck over my head. From this awkward stance I'm slowly crawling my way out toward that light at the top, one foothold at a time, collecting a lot of dirt under my fingernails.

Vegetable and fruit pushing is ramped up to high intensity mode and so has eating in general. I do not have an appetite and I am losing weight so am making a very conscious effort to eat as much as I can and get in as many nutrients that I can – case and point the kale, cantaloupe, avocado, coconut water smoothie I am choking down right now. (It's actually quite delicious). I must do everything that I can to keep myself strong and healthy for whatever treatment course I face next.

More information is needed before I can make this decision but I know that going to MD Anderson, which is right up there with Sloan-Kettering for best cancer center in the nation, is the right move. We'll see what they have to say. On March 31, I once again become eligible for treatment as I will be 28-days off of SGN-35, a requirement for the majority of these trials. I want to be ready to roll when that date hits.

Big bonus, our good friends Betts and Brenna just moved to Houston this summer and are opening their doors to us. It'll be wonderful to see them and crash in their apartment. I'm especially excited to lounge by their complex's pool in the 80-degree sun. It is snowing here right now so the idea of flip flops and sunscreen makes me smile from my curly locks to my tootsies. It'll be a perfect balance to the numerous medical appointments and tests at the cancer center.

We've got to get to packing our bags – again. We've never been to Texas.

Tuesday, March 15, 2011

It Is Not My Time

I know that many people are out there who have been rooting for me and thinking about me these past couple of days so wanted to write a very brief update. I so much appreciate your support. More than I can ever express.

Unfortunately, I did not get the news that I was hoping for. Yesterday's PET Scan revealed that the cancer is no longer shrinking. In fact, it is growing, primarily in my chest and in several bones. The cancer has mutated itself yet again so that it is now resistant to the SGN-35 chemotherapy. It is fierce and intelligent.

I am thoroughly disappointed, very sad and exhausted. Though it is very unwelcome news, it does not come as a complete shock as I really had not been feeling well. I deeply feared that the cancer was again encroaching as much as I visualized otherwise. It is very difficult to take these blows. However, I have by no means lost hope, nor fight.

I cannot enter into the allogeneic transplant procedure while the Hodgkin's Disease is actively on the attack. In no pleasant terms, I would not make it through it. I need to be very close to remission with obvious signs that the cancer has surrendered. We just have not found the drug that will do that yet, but there are more options.

We are home now and Craig and I will head back to Sloan tomorrow evening with plans to see my lymphoma specialist on early Thursday morning. She has thoughts on a new clinical trial that just opened there with yet another promising experimental drug. Craig described it well today saying that we have a big locked box before us and a full key ring in our hands. We just need to find out which key will open that lock. One of them will, we just haven't tried it yet.

I have found this Mumford & Sons song to be a wildly appropriate expression of what I am feeling. I will not choke on this unwanted noose around my neck.

The Cave:

"So make your siren's call

And sing all you want

I will not hear what you have to say

Cause I need freedom now

And I need to know how

To live my life as it's meant to be

And I will hold on hope

And I won't let you choke

On the noose around your neck

And I'll find strength in pain

And I will change my ways

I'll know my name as it's called again"

Sunday, March 13, 2011

All My Bags Are Packed (If I Have To Go)

We got through the whirlwind of the past several days and the hope is that the drama is over. I burst out laughing today listening to Craig recount everything that's happened in a phone conversation.

Turns out that the basement flooding that blew out our furnace was caused by a backed up sewer drain, clogged with roots from our tree in the front yard. This had been forcing the sewer water (i.e. pee and poop) back into the basement mixed along with all of the melting snow and rain water that filled it. This is one of the headaches of living in an 1850s home with apparent historic "Mickey Mouse job" plumbing that decided to fail this week – decades and decades later.

Cleaning up from that required the help of both of our very strong brothers, our neighbor and his brother, a burly, wise cracking plumber named Marv, and Mike, the gym teacher. They devoted their Friday night and Saturday helping Craig discover and diagnosis what was an even bigger problem as evidenced by the 8-inch wide sausages of sulfuric rotting shit and organic matter that Craig and our neighbor pulled out of the pipe. They could only describe the substances they saw as like those you'd find floating around a lava lamp – only a lot more rancid.

Our big crew of demo heros helped Craig to cut out the sheetrock walls and pull out the insulation which had wicked water to heights of four feet. They pulled up all the floor tile and filled two trailers worth of dump runs with all of the things that were water damaged: couches, chairs, paintings, tables. But, they are just things. What we lost doesn't hold a candle to the devastation in Japan, keeping this all in unfortunate perspective.

The most entertaining part of the day was watching the crew of men stand around the sewer drain in the street to watch when the pipe auger pulled out the clog of rotting organic matter and the water gushed like a firehose. The boys also liked watching the water come flooding in every time the toilet flushed inside. It was awesome. You'd think they was a six-pack of brewskis down that hole the way they were glued to it. We are very, very lucky to have such strong, capable, strong stomached and helpful-in-times-of-crisis type friends and siblings.

I have stayed far away from the basement water and the subsequent mold and mildew for fear of contracting anything that my low immune system may not being able to fight it. The boys wouldn't let me down there even if I tried. We're having professionals come in this week to spray it all down with hospital-grade disinfectant to kill any germy growths brewing down there.

Speaking of germies, on Thursday I decided that I should call my Sloan oncology team to let them know about the sinus and upper respiratory symptoms I had been fighting for several days. My sinuses and throat had been aching and I'd been blowing out and coughing up a lot of bloody mucus in conjunction with coughing fits that lead me to gag. It was nothing debilitating and nothing that I would normally make a big deal of, but knowing that I could potentially go into transplant this week, I wanted to be sure that we kick this so that there are no cold viruses lurking.

I fully expected that they would call in antibiotics over the phone and all would be done. I was wrong. They heard my symptoms and wanted me in urgent care at Sloan-Kettering. They didn't want me to see my local oncologist or go to the local ER, they wanted to see me in person, despite the 3-plus hour travel time. I suppose I forgot what a careful watch I'm under. We need to make sure that I am in prime shape when entering this procedure and they want to leave nothing at chance.

So after I cried and whined for a little while at home by myself I sucked it up, threw together an overnight bag and drove to the train station. I took the train in solo to the city and spent several hours doing a lot of waiting in urgent care. My friend Lisa came over from Hoboken, NJ, to give me much-needed company by sitting in the waiting room with me, then coming back into the exam room to see the doctor with me. It was so assuring to have her there and it helped me to keep my mind off of how tired and whirling I was.

The urgent care doctor ordered blood cultures, a chest x-ray, nasal swabs, and gave me a thorough physical exam. Anything scary, like a pneumonia, was ruled out. He explained that even so, they wanted to treat me more aggressively than normally necessary as if I am fighting any kind of infection, I cannot go into transplant. I left with a z-pack of antibiotics and the assurance that I "look good."

Lisa then escorted me through the pelting rain and wind back to Hoboken where we shared fancy scrambled eggs cooked by her boyfriend Seth, good conversation and a warm cup of tea before I crashed on their comfy couch, falling asleep to the sound of raindrops on the sky light above me. Friday morning I followed her directions to navigate back to Grand Central and eventually back to Tariffville, CT. In total, just over a 24-hour trek. Then came the pipe and poop adventures of the weekend ... .

With a lot of determination during all of this, every bill has been paid a month ahead and all of our paperwork minutely organized, filed and in order. I packed a suitcase with three months worth of clothes and another suitcase of things to entertain me during that time. It's amazing what can be accomplished when it has to be. Everything is ready to go, I just need the word to hit the big red button. And in two days, I will know whether or not we lift off.

Tomorrow I travel back to Sloan-Kettering. I'm meeting up with Lisa and another dear friend, Meredith, to chill for a bit, then to the hospital for a resting echocardiogram, a pulmonary function test, and the all-important PET Scan. Tomorrow evening when the tests are all completed I'll meet back up with Meredith who will be working in Manhattan and we'll ride the train together back to her apartment in White Plains, NY, where I'll crash for the night. Phew.

On Tuesday, I'll take the train back into Manhattan and meet with Dr. Sauter to go over the test results and hear his plan. My head is reeling for sure and all of these logistics and multi-scenario preparations have most certainly been exhausting, but the distractions have almost been welcome. I'm ready for whatever the news is. No matter what happens, I've done my damn best and that is all that I can ask of myself.

Wednesday, March 9, 2011

SGN-35 Treatment Four

So much has happened since my last blog post, much of which has kept me from writing. For starters, I had a negative breathing reaction to my most recent treatment, my bladder near burst, our half-finished basement flooded with a foot of water, our furnace busted and with it our heat and hot water, my sister moved to Vegas, and I'm "scheduled" to start my allo transplant on March 17 – yes, that is in 8 days and it is St. Patty's Day. "Tweedle dee dee," says the Leprechaun.

I'm holding on by the skin of my teeth trying to keep it together. The oppressive "To-Do" list helps to keep my mind off the anxiety of the medical procedure itself and the basement/no heat issues have brought their own distraction baggage. For me, who can't be around the dank water and impending mold and mildew, this has included lots of phone calls and house calls from firemen, insurance adjusters, HVAC pros. I am so grateful to have Craig who soaked through four pairs of shoes, a lot of duct tape, and a lot of mopping to get all of the standing water out through a comical series of hoses and drainage piping and into the street. Even our old lady neighbor came out to tell Craig that all the bridge club ladies in her house were laughing at him out there in the snow wearing shorts and wielding spouting tubeage. My hero!

What I mean by oppressive "To-Do" list is that I found out this past Thursday when meeting with my transplant doctor that there is a very good possibility that I'll be moving to New York City next week for a very long time. There is a shit storm of logistics, laundry, paperwork, bills, packing, insurance, household tasks, and filing to get together before that happens. And it may very will be a repeat of September when we got to this point then had to turn back around.

Dr. Sauter has scheduled a PET Scan, resting echocardiogram, and pulmonary function test for me on Monday, March 14. He'll call me to go over those results on Tuesday and make the "yea" or "nay" call. If all of my body functions are acceptable and my PET Scan essentially clear then we move onward and I'll be admitted the next day for a new catheter placement then start the inpatient lead-in chemotherapy to knock my immune system down to zero. Simultaneously, we'll fly my sister back to the east coast and start pumping her with twice daily shots of Neupogen to stimulate her bone marrow.

We are preparing for this to happen and also trying to prepare for what it means if it doesn't happen yet, which is that there is still cancer present and that more SGN-35 is needed. I'm warier of continued infusions of SGN-35 after last week's scare. The bronchial spasms that I had been getting mildly with the first three infusions got worse with this one. About 30 minutes post-infusion I couldn't take a deep breath without spastic coughing so the chemo nurse gave me an Albuterol breathing treatment to open up my breathing tubes and then shoved oxygen tubes up my nose while my mom and sister had to sit there in fear watching it all go down, though they played it cool. What was not cool were three fully garbed nuns and a priest that kept walking by the room I was in as if they were ready to pounce and bless me if I redlined. It was like the set up for a bar joke.

The nurses monitored me for another hour after that as our day got progressively longer. Then at 3pm, we got the visit from Dr. Sauter who gave us the transplant plan. Luckily, my sister, Kristen, was there with me (a strategic move on our part on the off chance that they might be able to do some pre-transplant testing on her before she moved out west). We lucked out as Dr. Sauter somehow made it happen that Kristen got to see his nurse practitioner to go over the whole donor process/restrictions/procedure/drugs/paperwork with her again, do a full body exam, get her a chest x-ray, echocardiogram and draw 14 viles of blood from her. This was a surprise and a relief to all of us. We ended up sitting across from each other in the lab, each of us with a needle in our arm watching each others' vials of bubbling red blood stack up on the counter. I can't even imagine what this must be like for our mom to witness, but somehow she is still able to crack jokes and deliver us lunch.

Since then, I had two day of tremendous bladder irritation, spasms and pain that knocked me right out. The irritation came almost immediately after the infusion and I was writhing the whole train ride home. But on day three, all was gone and besides having to go every hour on the hour, my bladder is back to "normal". I also had a shot in the behind of Lupron, a drug that puts me into a temporary early menopause in the hopes of protecting my ovaries and keeping me from bleeding during the transplant ordeal. It's left me with crazy hot flashes and emotions. The tremendous fatigue remains, as do the backaches, but overall I am okay. Eye on the prize.

All now rests on the results of Monday's PET Scan. "All" includes not just going into transplant, but when Craig's leave of absence from teaching will start, when we'll need Miracle House and Hope Lodge accommodations, when my sister should book her flight back to Connecticut, when we'll need a Sammy dog sitter, the list goes on and on. It is all teetering in balance. In the meantime, we're packing our bags and closing up shop one checked box on the "To Do" list at a time. Right now? Laundry is going, the insurance adjuster is here, and I'm fielding calls with social workers and Miracle House then must break for a desperately needed nap before yoga class. Tax filing time tonight.

In the wise words of Charlie Sheen: "Duh, WINNING!!!!!!!!!!!!!!"