Finally the appointment at Dana Farber has come and gone. The importance of this appointment to my parents was clear to me but not something that I could really understand. I guess there is something to hearing straight from the doctors mouth that it is cancer and that they are not really thinking that there is anything they can offer. I have already heard it. I was able to gauge the professional reputation of the hospital I was working with in Columbia. They were not. For a brief moment I think I understood when we heard basically the same information that we already got what my parents might have needed out of this appointment.
There is some potential new information. The doctor, who was a young woman with a mild manner and who seemed to know her shit so I felt generally comfortable with her, suggested that the cancer might be a little more aggressive than originally thought. There are more tissue samples they want to look at which didn't come in the first batch of what was sent. I didn't really understand what she was saying but something to the effect of these tumors seem to be poorly differentiated and thus moderate to high grade. The grade has to do with how much cell division and death is occurring. What this means is that the tumors are messy looking and active.... There is more that they need to do though before they say this for sure. All this means that they might try to offer me conventional chemotherapy if it is what poorly differentiated and high grade or they might be able to offer things in clinical trials if it is lower grade or more differentiated.....
The whole feel of the hospital was different than when I meet with alternative practitioners of one kind or another. In the hospital I felt uncomfortable because I got the impression that the doctor and nurse basically assume that I am going to die in a couple of years and everything between now and then is just to make it closer to a few years than a few months. There is a lot of focus around taking the pain away and very little focus on overcoming the odds. It seemed all about facts and statistics. I wonder what it is like to go into work everyday and get news that more of your patients are dead. I think one common natural response to this is to distance oneself from emotion. People become statistic and facts. I become a statistic when I enter the hospital.
Some things I have been reading suggest giving your doctors hugs. I really buy that. I have not yet been able to do it though. I feel uncomfortable because I worry that it would challenge their feeling of professional boundaries. THat it would feel awkward. It is my goal that if I start seeing a doctor more regularly I am going to hug them. ... All.
On hugging.... I saw my pediatrician who taught me how to use my mind to change things in my body because he was waiting for a massage after mine. We had such a nice heart felt hug and a great chat. So warm and open. I felt really happy to be able to thank him in person for giving me that gift so early in life when it just seemed matter of fact. He seemed genuinely interested in me and my well being.... maybe I could have a pediatrician as my primary care doctor, he did say he was back in the area. It was fun to notice that as a kid when I was hiding behind chairs to avoid getting vaccinations (which for some reason seemed like I got a lot of them) he seemed like a very big tall man. Huge even. I now know that he is my height and very average stature. It was fun to be able to access my kid eyes for a moment and notice the difference with my adult perception.
I feel so thankful to my sister who has always stepped up to defend me when the need was there for the ways in which she is stepping up big time on this one. Two nights before the appointment she called and checked in about how I was feeling about it. We discovered that I was sort of disconnected about it because I was worried about how it would go with my parents. I still hadn't made a list of questions to ask even though I wanted to and I hadn't even considered finding support from a friend outside of my parents for the visit even though I am super aware of how wonderful it was to have support from friends in the Columbia hospital. Sharon helped me see the full potential of what the stress could be like and become much more prepared. It was really nice to have Rebecca there to take notes and better yet to lighten my mood and help me be less involved with whatever was going on for my parents. It was great to have a list of questions because I wouldn't have remembered anything I wanted to ask. It even ended up being okay to have my parents in the room with me during the appointment. I feel more comfortable that if chemotherapy is offered my dad understands the full implications of what that could mean and might really support me in wanting to work fully for a while with alternatives to see what effect they have before considering the chemicals. We were in agreement that the doctor listed only a few of the possible side effects of chemotherapy and that there are most likely more.
I did accept a little more radioactivity going into my body in the form of an octriatide test. I think this will help them see if the cancer is in more parts of my body.... It will apparently give a little more information to the diagnosis. Why? I am not really sure. I don't really like being in the hospital, I feel like they are planning on me dying soon and that feels uncomfortable to me. Everyone was super nice but it is a sad place. I don't even think it would be okay to bring flowers and give them to people in the waiting rooms because there are people there whose immune systems have been blasted away and it could be detrimental to their health. I feel so thankful for when i accompanied Lynne to the place where she got treatments. She was so cheery and outgoing and didn't seem to let the gloom state get to her and she left a trace of cheer in her path.
I now understand why when I tell people that I have cancer, most people have a response of oh, when my (put relative in here) had cancer..... the hospital was packed. Cancer is all the rage now, everyone is doing it.
I have not yet been approved for Mass Health but it seems like it will be no problem. I am sort of floored by how easy the process seems like it will be. Already they let me fill a prescription as though I was approved and the person I was working with told me the best way to get the best coverage and exactly how to do it. It seems like it might be really great coverage for the western portion of things.
I was hoping that because Dana Farber has a whole section of integrative health stuff that their accupuncture and massage would be covered by Mass Health. Alas, no insurance covers it. It is good because then I wont feel like I have to drive all the way to Boston to get those treatments but it sure would have been nice to get them for free. I know, don't worry about the money.... for the most part I think i am doing a good job with this but truth is I would like to live long enough that maybe my money will run out and it would be nice to make it last a bit.
So the second opinion is in, guess what...its cancer. i gave some blood and urine to a study about this kind of cancer.... maybe they will find out if there are any genetic markers for this one.
I have successfully started on 5 of the supplements to full dose. I think I have only two left to incorporate. Of course they are the ones with the highest likelihood of problems but I feel ready. I have given in a bit to the pain medication (I felt like I could have gotten anything I wanted from the doctor today as she was all about, just wanting to keep me out of pain) and am taking them more regularly before bed and sometimes during the day. I think it is okay. I got the one that i supposed to be less harmful to the immune system according to the naturopath but not according to the doctor. I will see what that can do for me because if it is true or not about the immune system, if I believe it then it works for me. I think this is all about believing.