The First 12 Days

Little did we know that so many people were converging on Houston during the same time that we would be here. Let’s see. We’ve been here since March 29, 11 days, and we’ve seen the Red Sox play the Houston Astros; free concerts by Sublime with Rome, Kings of Leon, Pat Green and Kenny Chesney perform; We saw the UConn Huskies men’s basketball team play in the Final Four – and win the National Championship to boot. From house seats we watched Lady Gaga’s Monster Ball concert and had the chance to see Craig’s cousin, Chevonne, perform right there along with her. Not bad, Texas.

And it’s not only been the famous or the athletic elite that we’ve been surrounded by, but also so many amazing friends, even though we’re 1800 miles away from home. We stayed our first week with our friends from high school, Mike and Brenna. Joining us for the UConn action and Texas eating was another friend from high school, Kevin, and his fiancée, Sam. Also, we met up with Craig’s fraternity brother, Jon, at the National Championship, who came all the way from Chicago and who we haven’t seen since our wedding. We watched some of Kings of Leon from a high-rise balcony with two more friends, Jen and Kathryn, we know through my brother-in-law. And my childhood best friend’s husband, Luke, met up with us for dinner while he was here on business.

Unreal serendipity and tremendous kindness by people all around have blown us into Houston with a bang. However, there still has been that old cancer thing, the reason that I am down here. But I couldn’t even fathom a better balance to all of that junk.

The treatment that I am on is not a type of chemotherapy. It is a targeted therapy in its experimental phases. Even so, the data so far has proven that these drugs have worked well to inhibit the protein cells that can drive Hodgkin cells to grow. It’s the combination of these two drugs that is still experimental. Because these oral drugs work in a completely different way than traditional chemo therapy, taking them is the best shot at getting me into a complete remission as my particular disease has proven many times over that it is resistant to chemo.

I had my consult with Dr. Younes and his nurse practitioner, Amy (who I work most closely with), on Tuesday. They all agreed with the recommendation from my team at Sloan-Kettering that the Panobinostat (LBH589) and Everolimus (RAD001) trial was the one for me. They had reviewed my case and all of my scan results back to first diagnosis all the way through my treatment path and reiterated that my disesase is highly refractory and that allogeneic stem cell transplant will be the only way for a long-term disease-free remission (there is no cure). It was also agreed that I need to be in a near-perfect remission before that can happen and that these drugs will hopefully do that.

It is difficult to hear everything that I’ve been through over and over again. It’s part of a new doctor’s routine to run down the list of all the procedures, drugs, relapses that I’ve had. With each mention, I have to relive it again – all of these pictures of woozy pain come to mind and I feel everything all over again. Even the mention of the drug Melphalan brings me back to “Day +1” of my autologous stem cell transplant, which was full with stomach pains, tears and fear. This is the difficult part about seeking additional opinions on my medical case. I have to talk about it all and hear about all the grave statistics all over again and again.

Despite my medical history that clearly shows this is where I need to be, the rules had to be bent for me a bit to get onto the trial, which has many inclusions and exclusions, as do all scientific studies. I had a CT Scan at MD Anderson, which was read as having no disease significant enough for me to be able to receive treatment and that with only some very small lymph nodes lighting up in my chest that I should be in a good enough remission for transplant. This was a shocking phone call to get. I had just woken up from a deep nap in Mike and Brenna’s spare room to a phone call that apparently my cancer had retreated since my grave results at Sloan just two weeks before. I said out loud to the crew: “Man, I take one little nap, wake up and we’ve suddenly got tickets to the Final Four and I no longer have cancer. What?!?!” The positive side of me hoped that the SGN-35 had just needed a couple more weeks and had been continuing to blast and burn cancer. I even called my sister to tell her to be at the ready, that this transplant might be happening sooner rather than later.

That news lasted for only a short while: April Fools! I got the call on Friday, April 1, that reverted everything back to plan A. My Sloan team, who knows me best, conferred with my MD Anderson team to have them look closer at my PET Scan taken there and all agreed that I have significant bone disease. Disease in the bone does not show up on CT Scans, but my PET is certainly lighting up. So, it was decided that the CT requirement would be waved and we will instead use PET Scans as the baseline and follow-up tests to see how the drug is working. I have so many ridiculously smart people advocating for me and so much burgeoning science in my corner that I have no doubt this will work.

I took the pills home from the hospital pharmacy on Friday in a brown bag and took them in the car. The LBH589, which I take 3x per week requires it be taken with a 250ml glass of water and the RAD001 requires me to be in a fasting state – nothing an hour before, nothing an hour after. I need to space them out by 30 minutes so that if I “upchuck” as Amy said, I’ll only lose one dose of medication. Other than that, no restrictions. They are not horse-sized pills, which is good and one is even coated like a Tylenol gel capsule so that is even better.

After starting, I was well enough to be out and about, but my body was pretty wrecked over the first several days. Friday was overall fine. On Saturday, day 2, things really hit rock bottom. It felt like someone was inside my stomach twisting and wrenching my intestines and then everything got rejected in a violent spewing way that was unlike anything I’ve ever seen. Of course, this feeling did not come on until we were in a train car on the way from Kings of Leon to Reliant stadium for the semi-final game packed body to body with painted face, sweaty college basketball fans. I had to bail two stops before the stadium and run/waddle to a bathroom, with poor Brenna frantically helping me search for any public restroom. I made it to a stall by a very uncomfortable margin. And we made it to the first game by half-time by an even narrower margin. I had blurred vision and dry mouth but that UConn vs. Kentucky nail biter kept me screaming and on my feet just the same. This bathroom adventure is highly worth its own blog. For now, that’s just a teaser. It was the stuff of fiction.

The achy intestines remained all the way through Monday. I only picked at food and tried to drink as much water as I could. We all lazed most mornings and took it easy/napped during the afternoons in order for all of us to save energy for each evening’s festivities. It was kind of nice to have everyone on my same schedule; the excitement of the Final Four fever took a lot out of all of us. I was dragging heavily by Sunday night’s Kenny Chesney concert. The GI side effects had moved from my stomach to my esophagus, which felt as if someone was shooting a blow torch down it – everything was raw and ravaged. Choosing to pick at spicy curly fries from our blanket perch at the outdoor concert was probably not the best choice on my part either. But chances to see Pat Green and Kenny Chesney perform do not come every day and I was not going to miss it. I’d rather be there in the fresh air with Kenny crooning about Yoo-Hoo bottles rolling on the floor boards than be curled up in a ball in bed. I was going to be uncomfortable no matter where I was so I chose atop a tapestry on a grassy knoll with my husband and four great people.

Before treatment started I did get a good dose of Texas cuisine. I was happy to have gotten in one drive-thru margarita from the pick-up window. We’ve eaten super spicy jambalaya, Texas size Po’Boy sandwiches, burritos and breakfast tacos to the max. After I started treatment last Friday, April 1, I’ve lost all appetite, unfortunately. I have to force myself to eat and am still trying to do that the best I can. Little bites like a baby bird.

My body aches were also pretty bad those first few days. I still feel it where the cancer is manifesting in my bones. My hips and low back get very tight and tense. Tylenol does help though and I haven’t needed more than that. I’m sure that all of the packing, traveling, stress, anxiety, confusion, and overwhelming events contribute to the body aches as well.

After starting the clinical trial, I also met with a transplant doctor and his team at MD Anderson to get their take on my situation. He was in agreement with Hartford, Yale, Dana Farber, and Sloan-Kettering that an allo transplant is my best opportunity for long-term remission, despite the risks that allo transplant can carry. He also gave me further hope saying that because I have a perfect match and because I am young that that risk factor of severe graf vs host disease is highly reduced. Consistent with Sloan, they have a 30% success rate and here they have performed allo transplants on 25 patients with refractory Hodgkin’s who have also failed autologous stem cell transplants. As I quote from him: “Your biggest risk to you is the tumors, not the transplant.” It is also encouraging (I know, strange to say) that though my disease is widespread in my body, there are no bulky masses. He agreed with the great promise of these clinical trial drugs and said he fully expects that I’ll have a very near complete response from them.

The transplant conditioning regimen and protocols at MD Anderson and Sloan-Kettering are markedly similar and the doctor here saw no reason why I shouldn’t get my transplant at Sloan, which is so much closer to home. In fact, the director of Sloan’s program was recently the same guy who directed the one at MD Anderson. It was assuring that all are in agreement on my proposed plan of care. The key will be to move very, very quickly as soon as I show a sufficient response to this targeted therapy. I can’t let things wait as all of these doctors have told me that with my quick-relapse history the drugs will not put me into remission for any significant amount of time, but that the immunotherapy with my sister’s stem cells potentially will. The disease in me is “very resilient” to quote one doc. It is still not as resilient as I am.

Follow-up has been a close watch on my heart and on my blood counts. I need to come in to the cancer clinic once per week for an EKG and to check my blood cell levels. This past week’s EKG showed some possible abnormality but nothing of high concern. As a precaution they have set me up to see a cardiologist this coming Tuesday who will do a closer analysis of my valves and heart functions. Chemo and cancer can cause crazy things to show up on these reports so they’ve assured me not to be worried, but that they are just being especially cautious. This of course makes my heart pound heavy and makes me nervous as hell for my little heart, but I’m getting a better control on that anxiety. Craig tells me that unlike the Grinch, my heart is probably just two sizes too big. I hope that’s all it is.

The blood taken from me on Friday revealed that my levels have plummeted quickly to the point that I needed to hold my pills that day and all through the weekend. My platelets have dropped to 68 (they need to be 75 to stay on the drugs) and I am now considered neutropenic again as my white blood cell count is down to 1.7 and my ANC (the number they are most concerned with) is under 1,000. I can’t safely start the pills back up until those numbers climb back to required levels. This is not uncommon and my nurse, Amy, told me in the beginning that none of the 20 or so others who have been on this trial have been able to take this high of a dosage every day without having to hold the pills for a few days. It is a bit frustrating that it is not the side effects that I can’t handle – I’m doing fine with them. It’s the functioning of my bone marrow, which is something I have absolutely no control of.

Neutropenia means that my immune system is near non-existent, so I need to be diligent on good hand washing, food safety and all of that jazz. I probably should not have gone to the Lady Gaga concert Friday night, but my counts have been much lower in the past, I was feeling fine, and I used a lot of Purell. Again, I have to weigh the risks and the rewards in these types of situations. There are many months to come when I’ll be locked up in a hospital room so I’m spreading my wings as wide as I can right now.

I’m finally starting to find a balance between activity and listening to my body’s needs as I realize the effects that this drug has on me. Fast forward to today, Saturday, eight days after starting the trial, six days worth of pills in my system. My GI tract is completely back to normal and the heartburn, fire-in-my-chest feelings are gone. The sores in my mouth and the soft lining of my esophagus that I thought were cropping up last week have also dissipated. I am very tired, the fatigue exacerbated by the low blood counts. My appetite is still nill, but food is much better tolerated. I’ve gotten back onto a blander, healthier diet that includes more snacking/small meals throughout the day.

We are settled into our furnished apartment and I’m currently writing from a lounge chair in the hot shade by the complex’s pool. This makes every cell in my being feel happy. The sunshine and warmth make a huge difference. Our place is brand new with a kitchen way nicer than ours at home, a separate bedroom with a comfy bed, washer and dryer, a first floor balcony, spacious bathroom and shower/tub. It has all of the makings of a home away from home and Craig and I are very comfortable here. It was a perfect choice and I am so grateful to the mother of a fellow Hodge warrior who recommended it to me (Thanks, Nancy!).

Even though it is 88 degrees and I love exploring the culture of Houston – my first time in the South – I do miss home, my family, and my pup Sammy very, very much. My parents fly in for a 10-day stay next week so we’re both really looking forward to that and our very special friend who is dogsitting Sammy for us has been sending us a good influx of adorable pictures of her with her doggy friend, Ruby. It’s a vacation for Sammy as well, I suppose. I hope she remembers us.

I am very fortunate to have the husband that I do and to have him here with me. If I were here alone I literally don't know that I could function. Two heads are much better than one in handling all of this, especially when my head is detached sometimes. He found an iPad app that records all of the conversations we have with doctors and he asks the questions that I sometimes forget I wanted to. I've been very weak and my endurance very short so he's been my mule – to put it in a very unromantic way. Craig has been doing a lot of schlepping of suitcases, medical record binders, grocery bags and household goods so that I don't have any extra weight to carry when walking to the train or bus. He keeps me laughing and in good spirits and he keeps me on top of things and has become the social coordinator and public transportation navigator as we do not have a car here. We make a good team.

All in all things are settling in on all fronts. I’m told that the third and fourth week on this trial will be the toughest – something to look forward to. Right now I am okay, but I do hit major walls, which leave me with no choice but to lie down and sleep. It doesn’t take much to completely deflate me of all my energy and the deflation doesn’t come gradually. It happens with one big pop. On Monday I will head back into the cancer center for further bloodwork. The hope is that my body regenerated enough blood cells on its own to get me up to snuff over this weekend, but if not, they’ll shoot me up with some bone marrow stimulating shots. I’m okay with being on a pill break for the next couple of days. My body could use the rest.

Houston Highlights:

4-10 blog pix