To the Hip to the Hop(kins)

Hello! I owe you all a follow-up post to fill you in on my Hopkins visit.

First off, let me tell you...this Hopkins cancer experience was so much better than my last experience there and it turns out that it is because I was in two completely different parts of the hospital system. This time, I was seen at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital. Before, I was seen in the regular Outpatient Hospital Building, where I waited over 2 hours to actually see the doctor, whose bedside manner was "eh"; they expected me to do all the legwork to collect my previous medical records; and I got the feeling that they felt they could do these things just because they were Hopkins and they could.

This time around, Hopkins managed to collect (or at least start the process of collecting) all my previous medical records, including actual pathology slides of my cancer cells, during the 2 days they had to prepare for my visit. They pretty much knew everything about me before I even walked in the door. (When I go to the Wilmer Eye Institute at Hopkins, I always have to explain my entire medical history to whatever fellow or resident I meet with first and then sit and watch them read my medical records...it irks me to no end). My wait time was about...5-10 minutes max. I didn't see The Doctor right away, but I had a scheduled appointment with her fellow for a half hour prior to my scheduled appointment with The Doctor. Even her fellow was amazing.

Anyway...for the most part, my visit was a bit anti-climatic. I guess I expected to walk in the door and have the answer to my prayers presented to me on a silver platter. Ha. If only it worked that way. It turns out that they DID have a clinical trial in mind for me, but after reviewing my history, I don't qualify for it because of my need to take the awful prednisone for my eyes. This prednisone crap is, unfortunately, going to keep me from being eligible for a lot of studies. I am, however, to receive a call next week from the study coordinator at Hopkins with a list of possible studies for me to consider.

In addition to these studies, I can also consider another standard treatment option that I haven't tried yet, as well as, waiting it out awhile to see if the drug I am currently taking is doing anything to improve my condition. We are also working on getting a similar consultation with someone at NIH and NCI. The choice is mine what to do next and there doesn't seem to be a clear-cut correct path to choose, so I have a lot to think about.

Regardless of the anti-climatic outcome of my Hopkins visit, I do feel like I accomplished a few things during my time there:

1. I learned a little more about cancer and cervical cancer. I knew this on some level before, but I now have been reassured that the reason I can't find more information about stage IV cervical cancer anywhere is because it's just not that common. Most people are free and clear after treatment during an earlier stage and very rarely does it recur. I am just one of those "special" people, I guess. Because of this, there also aren't a lot of studies specific to late-stage cervical cancer and/or a lot of clinical information about what does and doesn't work for late-stage cervical cancer patients. That being said, even with cancers that do have a lot of clinical data to support specific treatments, patients are all still different and unique and what works for one person may not work for the next. There is no one right answer for anyone. Bummer.
2. I am not necessarily as close to death as I sometimes think I am. After my last scan, I have had some pretty low moments...thinking about if I will be here for my birthday, for my next new car purchase (I had a small breakdown at the Mazda dealership during the purchase of my husband's new car), to work outside the home again, etc. During my visit, they asked me how "active" I am and I was like...oh, not very. I sleep a lot and if I walk it is with the dog to the end of the block and back, etc. And then they said, "but are you able to do things around the house for yourself, like cook and clean?" Oh yes!! Though my husband may argue with the second point. LOL. I still lead a "pretty normal" life. I do sleep a lot more. And you won't find me training for a marathon or even a 5K anytime soon. I can't stand in one place for very long or do heavy duty yard work. But, I am certainly doing a lot better than I could be. Not to mention...I am showing no signs of my liver falling apart anytime soon. The Doctor and her fellow gave me the impression that I am doing pretty well. I am not a lost cause. It's not time to dial up hospice. I think I sometimes compare myself to my pre-cancer, pre-prednisone self and I am nowhere near that girl right now. I don't know if this is the pressure that I am placing on myself or the fact that I know there are folks (friends and otherwise) out there that just don't get it. That don't get why I can't just up and eat right and exercise hard and get better. I don't get it either. It just doesn't work that way with cancer, I guess.
3. I think when I started writing this, I had a third thing to say, but I've forgotten it already. LOL. This happens a lot. But, I know it also happens to my other same-age friends too, cancer or no cancer...we are aging folks! Ha ha. OH!! I remember!! My liver! I got to see the images of my liver. I never got to see this before. They showed me the liver mass and my entire liver. The mass is not "small" anymore, but The Doctor said it is in a "good location" and well...we all could see that there is still a lot more healthy liver tissue than sick liver tissue and this made me very pleased.

So....there is more that I want to say, but I think this is enough for now. I will save it up for another post. For now, thank you all so so so much for your thoughts and prayers and encouragement. Please know that I consider you all my companions and co-survivors on this journey and this journey ain't over yet! Let's wash our clothes, reorganize and repack our luggage and keep truckin' on.

Love you,

Vashni