A week and a half ago I was able to spend 4 days in Scottsdale and Phoenix for my sister’s soccer tournament. It was a sort of ‘last hurrah’ with her club team before she heads off to college. One thing cancer has provided me is time to take a step back and do things that I haven’t been able to do in a while. I haven’t had many opportunities the past few years to see her play. It was awesome to see how much she has grown up, on and off the field. Before my diagnosis I was playing in a Thursday night co-ed soccer league on Chicago’s lakefront, but since then I haven’t touched a soccer ball. At Tori’s tournament, before each game, I would have her toss me a soccer ball - it felt great to kick it around with Devin and just feel the grass underneath my feet. It made me feel like I am exactly where I am supposed to be, cancer or not.
I was also able to see my former soccer coach, Scott Champ, who was my assistant coach at Princeton and is now the assistant for Arizona State. I owe my attending Princeton in large part to him. It’s nice to know that no matter what state I’m in, there are people rooting for me along the way. I was also able to see my Uncle Michael, Aunt Mary Ann, Auntie Cher, and a great family-friend Wayne. He gave me an incredible cross he hand made out of saguaro bark. Time for me to channel the strength of that dominating desert cactus, it was always one of my favorites.
Arizona was a great escape. We saw some of the most beautiful sunsets; I was able to show Devin what Arizona is all about (including a fun round at the driving range while the sun was setting); and I hiked for the first time, definitely overestimating my stamina post-surgery, but it felt good to get my body working hard again.
Directly after Arizona, we headed to the National Cancer Institute in Bethesda, Maryland. I tried not to have too many expectations in the sense that they would tell me the same thing that I had heard many times before, “we don’t know”. But deep down inside I was praying that this would be different. There were some good signs beforehand with them having already presented my case at their Friday conferences and matching me with a genetic counselor.
It’s hard to sum up into words everything about this trip, but I will do my best! Lucky for me, I was able to stay in the Children’s Inn at NCI. This is a place on campus where kids (up to age 25) and their parents can stay while they are meeting with doctors, undergoing treatment, etc. The detail and decor of the Children’s Inn made me feel like a kid again. It was like a big home, full of all sorts of gadgets, play rooms, playgrounds, and anything and everything to take your mind off the tough reality that every patient faces there. The staff was incredibly welcoming, greeting me with a goodie bag of note pads, pens, hand creams and soaps. Aside from all the magic the Inn held inside, it was also just down the hill from NCI and very convenient for all of us to go back and forth for appointments, labs, etc.
On day 1, I had labs, blood work, and met with the staff that would be following my case. I knew it was a good start when I was signing my initials on a consent form and I decided to include my middle initial (KFI). My nurse, Kathy, asked, “what’s that for?” and I responded, “that’s my middle name”. She responded, while laughing, “ well, duh. I must be the queen of obvious questions this morning”. I hadn’t even realized what I said – it felt good to laugh that hard. After Kathy, I met with my physician’s assistant, Julia. In my opinion she is one of the most important people because she is truly my number one advocate in meetings with the doctors. She is one of those people that after meeting her you feel like you have known her for years. I knew it would be a much different and more positive visit when the first thing she asked me was “What are your hopes for this visit? And what do you want from NCI?” I responded saying, “I realize the nature of my diagnosis and that there isn’t much information out there, but I am looking for doctors who are going to take a genuine interest in ME and my diagnosis. There may not be answers, but that doesn’t mean we can’t all work together to find some”. It was hard for me to hold it together when she asked that, I started to cry more because I was happy she asked, and less because I was scared to hear what they would say.
We went through the standard protocol in terms of reviewing my story, my diagnosis, what doctors we will be talking to, possible scans, etc. But it didn’t feel standard in the sense that she, like everyone there, was so in tune with the details. My parents and all of Team KK had been working tirelessly to outline an agenda for NCI with questions, possible treatment options, etc. We had done that at the other hospital visits, but Julia quickly took our agenda and promised to pass it along to their team. Besides her attention to detail, she also had knowledge that extended far beyond science and medicine…she even sang a line from Mozart’s “The Magic Flute” after I mentioned my aunt’s name is Cherubina.
After Julia, we met with the genetic counselor, Lindsay. She walked us through the genetic tests they would be running, why they were running them, and what they hope to find. It’s possible we we won’t get any conclusive answers from the tests (which take 10 weeks or so), but it can be just as helpful to rule out possible pathways as it is to find the potential one. Lindsay was incredibly knowledgeable. She walked us through a booklet of slides explaining everything from what is a chromosome up to the categories of different kidney cancers. Illustrating how rare what I have is…Renal Medullary Carcinoma wasn’t even on the page in the presentation. Nonetheless, she helped clarify and answer a lot of our questions, and for me, it was nice to feel like I was a part of my own case. The more knowledge I can gain about my own diagnosis, the more equipped I will be to continue to fight my own fight down the road.
The next morning I had a brain MRI in the morning, which thankfully came up clean and a PET scan in the afternoon. I had never had an MRI before, but I did remember my mom’s stories of her major claustrophobia. Julia had mentioned that she counts down by 3 from 100 so I decided to take that approach (knowing full well it would take me a while with my limited math skills). I closed my eyes so I never saw the inside of the machine and counted down and up by 3s, 4s, 5s, 2s, etc. until it was over. There were definitely anxious moments but that was a pretty solid strategy, I would highly recommend it. As for the PET scan, that is a scan that picks up everything from inflammation to a potential tumor. The doctors picked up a 1mm sized dot on the scan that could be any of the above. My heart sank and my mind raced when they told me that, but to ease my worries they showed me my scans and pointed out exactly what they were referring to…pretty cool to see my body in that way. I will be going back on December 17th for a follow up CAT scan to make sure that the little dot isn’t anything…I could use all your good vibes on that day J
After my scans in the morning I was so happy and grateful to meet Dr. Linehan, the Urologic Oncology Branch Chief, and Dr. Merino, one of the top pathologists in the world. I feel so fortunate to have them involved with my case. Dr. Linehan had a big presentation coming up that afternoon, but he took the time to meet with me. While he was talking, you could just see his mind working – incredible! Meeting Dr. Merino was one of the highlights of the trip. It was important for me to tell her how much I appreciate all that she has done. She was so kind and acknowledged how nice it was to put a face to the slides and that meant a lot to me. We finished the visit talking with Dr. Rahm, a gifted, kind, and intelligent doctor. He walked us through his opinions on what I have, possible treatment options, given different scenarios, etc. He was well versed on our agenda and took the time to answer all of our questions.
So many people have mentioned the importance of doing your own research and being your own advocate and it felt like on this visit that was finally paying off. Although the journey doesn’t end at NCI, and as a team we have to continue to research, NCI feels like my home base.
If nothing else, this visit gave me hope. Hope that there are answers out there for my CURE, and hope that I can help write the rest of my story.
P.S. I am working on adding my photos from the trip to the gallery. In the meantime, check them out on the my 10's fight to win facebook page!