Wednesday, August 11, 2010

Sisterhood of the Traveling Cancer Pants

Some people like to hit the historic landmarks or the best Thai restaurant in each city that they visit. Instead, we have been on a whirlwind cancer center tour. A tour that is quite exhausting and daunting. After the cancer recurred again, and I was told what a small patient group that I am in, we knew that second and third opinions were a must. Making sure I am being treated in the absolute best place for my needs is of the utmost importance.

When people talk about living in Connecticut they often say, "It's great because you can easily get to both Boston and New York." This used to anger me that everyone would overlook our own capital city, but for this purpose I couldn't be happier that we live so close (close being over two hours) to two cities that play host to two of the top cancer centers in the nation - the world, even.

Over the past two weeks Craig, my mom, my dad, and I (or some combination of the group) have traveled to New York City twice to visit with a lymphoma specialist then a lymphoma specialist/transplant doctor at Memorial Sloan-Kettering Cancer Center; back down to Smilow Cancer Center at Yale New Haven Hospital; and to Dana Farber Cancer Institute in Boston. My medical records, scans, pathology slides reached each facility before I did so they had the chance to review my case and present me with their plans. The assuring thing was that all the experts agreed that the allogeneic stem cell transplant with the use of my sister as donor was absolutely, no doubt the way to go. That no chemo will cure the type of lymphoma I have and that this immunotherapy is the best shot. What shocked us all a bit was how markedly different the outlined approaches and protocols were in which to accomplish this transplant.

Ultimately, the decision was very easy and unanimous (as determined by secret ballot). I can't decide on the type of granola to buy at Target without having a mental breakdown, but this life dependent decision was so obvious to me and my family. My gut spoke to me very strongly on this one. New York City it is. I've always loved the Big Apple and its incredible energy. Granted, I will only be able to watch it from my hospital room window for much of this process, but I'll still be there.

Sloan-Kettering is a world class destination for cancer care, consistently ranked as one of the top, if not the top, cancer centers in the nation. Its transplant program is extensive and they have as much experience and volume as I'll find anywhere in treating those in similar situations to me. Last year they performed 120 allogeneic stem cell transplants, about 15 of those being patients with Hodgkin's disease who relapsed after an autologous transplant as I have.

I especially liked the team approach that their transplant program takes which features an 18-person board of transplant doctors that discuss the developments in each oncologist's cases. My doctor will not be working in an island, but will constantly be conferring with other brilliant minds. Even with the team approach I will still have my assigned transplant doctor who will be with me all the way through. I immediately felt comfortable and confident in his presence. He is smart, straightforward, positive and easy to talk to.

They also have a very comprehensive program focused not just on the medicine but also on treating the whole person with an extensive Integrative Medicine program offering meditation, massage, music and art therapy, etc. They also have a strong program for my sister as donor offering her the tools that she'll need. I was impressed with how established and organized everything seemed. Lots of structure to the program which is an environment that I thrive in. I like rules and protocols – especially when it comes to my health.

Another huge selling point was that I will be on a floor devoted to transplant patients only. That means that all of the nurses and other caregivers on the floor are highly skilled in dealing with transplant patients and the unique needs that we have. This is incredibly assuring to me as I will be spending at least a month as an inpatient and being sure that the nursing staff is top-notch was extremely important to me.

Oh, and it's where all the celebrities go. Willy Wonka (Gene Wilder) had a stem cell transplant there. I saw his pic in the transplant survivor's slideshow. And, my friend Ethan Zohn, Survivor Africa winner had his auto transplant – and all his previous Hodgkin's treatment there. We talked for a while last week and he had nothing but positive things to say about his experience at Sloan and he's doing so well now that he's training for the NYC marathon. That gives me a lot of hope.

In addition to all of these aspects, we were also all most comfortable with the transplant protocol that they offer. Yale's treatment plan made me wary as they wanted to hit me with more high-dose chemo, which adds a lot of risk as I am so close out from my two auto transplants and this could leave me open to more infection – or worse, there'd be the chance that I wouldn't be able to recover. Sloan instead uses a low-intensity lead-in chemotherapy. At Dana Farber, also a world-class cancer center, my biggest turn off was that their allogeneic transplant patients are treated as outpatient in the recovery phase. I didn't like the idea of recovering out of the hospital as there is such a risk for complications (it's certain that there will be some ... we just won't know the gravity) as my sister's cells begin to graft in my body. At Sloan I will be monitored 24/7 until the initial grafting is complete.

Another appealing part of the treatment plan at Sloan is the use of low-dose, full-body radiation. This was something that neither the Dana Farber nor Yale docs suggested. The radiation is used to complement the chemo in its efforts to suppress my immune system enough to let my sister's cells in. It also will have some possible cancer killing effects, something that is hugely attractive since obviously the type of lymphoma I have is resistant to chemotherapy. I've never had radiation to this point because the disease has never been in one place that they can target. It always comes back in multiple areas, but this low-dose full-body hit may accomplish something, and something is better than nothing. Many of the doctors we spoke with said that Hodgkin's is highly sensitive to radiation and Dr. Dailey explained to me that it works completely differently than chemo in the way that it fights the cancer. We like this premise.

It's certainly a lot to take in but I am extremely confident in this decision and am very hopeful that this treatment plan will be successful. Though I'm sure the treatment would go well no matter where I chose, this is where I feel most comfortable in a crazy uncomfortable situation. From the parking attendants to the secretaries, everyone was friendly and helpful. The statistics of my case are scary and daunting and it was tough hearing them over and over from each doctor, but I'm trying to stay focused on the things that I have going for me, not the negative aspects of my rare form of disease.

Now that this decision is out of the way it's lots of logistics to come. Lots of upcoming tests and NYC trips. I'm looking forward to getting a more concrete plan in place. Just one more local GND chemo session to go then it's off to the allo transplant races.

1 comment:

  1. This sounds wonderful and promising!!! I have heard such good things about Sloan--I always felt that the radiation was a positive part of my cure--and so little side effects---ok sweet baby--go for it and we're with you all the way!!!! xoxoBev & Blake