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.


  1. What could be better than Texas??? You have been and always will be soooo strong physically and emotionally---this by mouth drug is your friend and saving grace---it's what you need, it's what will cure,-- We know you've been down this road before but this will be it We know and pray this every day and night---be strong sweet girl because you need this--so happy that you know people in Texas!!!! xoxo Bev & Blake

  2. Hi again Karin!

    I am so sorry to hear that the latest treatment hasn't worked out for you. I also have refractory Hodgkins. I am also going down to Houston, but I'm down there for scans. They are my first scans post auto stem-cell transplant. I am so freaking nervous about them that I haven't been sleeping for about 2 weeks now. I got my transplant at MD Anderson. My transplant doctor is Nieto and my lymphoma doctor is Younes.

    I understand that uneasiness in the pit of your stomach, because I feel it too. I understand how much of your life has been stolen from you, and how little acts of control can save your sanity. I know how frustrating it is to watch your plans crumble, and how difficult it is to make new ones that are more than a week away. Reading your blog helps me feel less alone, and I truly appreciate how honestly you express yourself in a horrible situation.

    Since we are going to be down at MD Anderson at the same time, I would love to help you get accustomed down there. I know who to talk to about housing, where to call and sign up. I was in Houston for almost 3 months, so I've gotten pretty familiar with the city. Please, please look me up on facebook, my name is Pegah Babaei.

    Sending you good thoughts and vibes,
    Pegah *_*

  3. Everything's bigger in Texas, right? Warm thoughts and healthy vibes being sent your way.

  4. Karin, I will be thinking of you in Texas and wanted to pass along a few of my favorite Houston haunts (I spent a couple of very hot summers there). Please go to Mission Burrito (a must if you only go to one place) and Amy's ice-cream. And, if you get a chance to go to the Ice House, you can play shuffleboard! Make sure you eat some good Barbecue...Goode and Company? Finally, I don't know how long you will be there but if you are looking for a weekend off, Galveston=nearby beach. Opportunity within obstacle. Houston=opportunity to see a new place/way of life. Perhaps your book will be arranged chronologically and headed with city names?

  5. Karin, the best of luck to you in TX. Ryan

  6. Thoughts and prayers are following you, Karin. God bless you and Craig.

  7. I have never met you but I follow your blog. I am sorry to hear of the latest developments. My father in law is being treated at MD Anderson for Lipo-Sarcoma. After 5 rounds of chemo the volleyball-size tumor has shrunk 70%. I know that what you are battling is different but I know that MDA works miracles. I hope that you have a safe trip to Houston! The weather has been very warm for this time of year so definitly bring tanks and flops!!
    -aimee in Houston

  8. Dear precious girl, watching and praying for you and your family as you continue your journey in Texas. You are so brave and dear. May this be what finally works. God bless and give you the strength you need. Much love is following you as you enter this new phase of your complete recovery. Love, Irene

  9. Miracles happen every day. Wishing you strength and comfort as your miracle awaits you in Texas.

  10. May Houston provide the key to unlock your cure. Positive thoughts and prayers to you and your family always. Have a safe trip!!!

    Frank, Laura Loyot and family

  11. Hi Karin. We are thinking good thoughts for your trip to Houston, that it may bring the "key". Keep up the strong, steady climb, knowing that you do have so many advocates, from home and all around the globe. The fact that you and "Clarity Craig" (that's great!) are open to different options and also generally open to the little joys of the world around you must be a huge asset during this chaotic time. Sending all of our warm thoughts and prayers!

  12. The "key' is so elemental, so crucial --- what, where, when -is the key to unlocking the cure to your infliction??? You and sooo many are looking, searching oh so hard for the cure of this insidious infliction. BE IT GONE!!!!! You will find it - not to be thwarted by anything! Ok there is a delay, but it only strengthens the soul and the being, this delay.
    You will find 'the key' - it will open the door to recover - it will!!! Your resolve, compounded with all of us who are also resolved to 'find the key and open the door to recover for you' is so abundant and determined - is simply incredible. The force by with you dear Karin Diamond. Nobody lingers forever with clarity. (ha)

  13. I live in Houston and have ordered up some especially nice weather for your arrival! I've been to MDA and know that yes, miracles do indeed exist there and I'm hoping there's one on reserve just for you. Enjoy the sunshine & flip-flop weather, and be sure to get some Mexican food. We've got some of the best. Lemme know if you want me to name names.

  14. Hi Karin,
    we're thinking of you and Craig and hope that things work out for you in Texas. We're sending all of our positive thoughts and energy your way.
    You are an amazing person and I know it's because you come from an AMAZING family.
    All our best---Connie Hotchkiss & family