And Jim is coming with me. Kinky! Ok, maybe not. The date is on 8/24, in Columbus, with Dr. Olencki at James Cancer Center, or, The James. I always thought my Jim was The James but the title has already been taken. And if you are an Ohioan, and know anything about OSU, "The" is an important word, since after all, it is THE Ohio State University.
The backstory... we met with Dr. Rini on Friday. In the morning I got a call from my gynecologist, letting me know that she had talked with him about my case, and had also consulted with a gyn-oncologist in her department. The consensus was that the abnormality in my ovary is most likely RCC and so they did not feel it was in my best interest to have a biopsy of it now. If systemic therapy were to cause my liver met to shrink but not my ovary met, then a biopsy would be indicated. I am in agreement with this thinking; my instinct tells me that while it is possible something else of a sinister nature could be happening in my ovary, it just feels like it's RCC.
In the afternoon I trekked down to Taussig to meet with Dr. Rini. Jim and my sister came with me, so I had two additional pairs of eyes and ears for the appointment. Dr. R explained what he believes to be my best options for systemic therapy at this time; they are the two options I described in my last post. There is nothing that pushes one of the options ahead of the other to a great degree, so deciding may be difficult for me; after all, I am a Libra and we're famous for our indecisiveness.
So then I presented Dr. R with the $64,000 question - what about HDIL2? He was absolutely fine with me investigating HDIL2, despite the concerns of some of my RCC friends that he might not be. We talked about the fact that the treatment has a low response rate, but he feels I am a candidate so it is worth a shot. W then discussed the "where" part and his two recommendations were Ohio State University, or Beth Israel Deaconess Medical Center in Boston. He said that if it were him or a family member in my situation, he would go to BIDMC. However, he did note that OSU has a good program, while BIDMC has a bigger national and international reputation. Dr. R said he'd be happy to contact Dr. Olencki at OSU or Dr. Mc Dermott at BIDMC and to get my records to them if I made an appointment. It felt good to have his support; I acknowledged that the likelihood of the HDIL2 working is not high at all, so most likely we'll be back to our original plan. But I feel like I have to try it, and now is the time, if I am going to do it.
I spent the weekend doing a lot of thinking, soul searching, talking with Jim about it, as well as some new good friends form the RCC community. We decided that going to OSU feels right for us, for a few reasons. The two main ones in my mind are the fact that it's only a couple of hours away by car, so the disruption of our family life will be lessened; that is huge to me because I HATE the idea of being away from the girls and throwing them into this turmoil. (More on them later) Also, Dr. Olencki is a former Cleveland Clinic doctor, which comforts me for some reason! Probably because the specialists that I have encountered at the Clinic have mostly been top-notch. Anyhow, in my heart I feel that if HDIL2 will work, it will work regardless of where I receive it. My Boston-area friends all deserve a big hug and Thank You though, because many of them emailed to offer to visit, help with the girls, or do anything I needed done if we went to Boston. These are all, except one, women whom I have never met in person... they are friends from my various email "mommy lists". We all read and hear stories about the evil Internet, luring kids, scamming people, and so on. But the REAL power of the Internet, for me, anyhow, is in connecting with people, finding people with similar interests or circumstances, who grow to care about and for one another. It amazes me every day to experience it, and to see what people will do for people that they only know by words and photos on a computer screen.
Anyhow... I called The James this week and got an appointment with Dr. Olencki for the 24th. Why so late? He's on vacation for the first two weeks of August. While part of me wanted to get in to see him ASAP, part of me is relieved; we can enjoy the rest of our summer as a family without the possibility of me spending part of that time in the hospital. Rebecca starts school on 8/26 - the big transition to first grade, in a new school, and riding the bus. I need to be here for all of that, and I will be.
Lots to investigate and to think about. If for some reason the IL2 doesn't pan out, then we're back to systemic therapy and the decision of Sutent vs. the Avastin/Torisel or Interferon trial. In the mean time, I'm in fight mode right now and trying to stay positive,which is working most of the time. I sent an email update to my work colleagues that included a couple of jokes, which caused a a few people to comment that they were surprised that I could be so upbeat. I definitely have times of feeling very downbeat, trust me! I just try not to show them to the world when I can avoid it. And I want to make sure that my attitude is as helpful to my medical situation as possible; so having a constant pity party is out of the question. I'm more worried about Jim, who doesn't express his feelings; he needs to let them out and not keep them bottled up. I understand him not wanting to express his sad feelings to me, of all people, but I hope he can find some outlets to help him cope, and help him to enjoy our time together.