You always know something is up when the nurse who is about to draw your blood goes, "Umm that doesn't seem right." She spends more time on the computer and then says, "Excuse me but I need to look into this. I have never drawn blood for this kind of a test before." She then walks away.
In waiting for her, another older woman enters the drawing cubical with another nurse to draw her blood. The nurse comments on her outfit and how cute it is. She then looks at me and says, "What do you think?" I look and say say, "Yes it is cute to this perfect stranger,"
The woman and the nurse talk about her history and diagnosis and she says she never expected to make it this long. She was diagnosed nine years ago and has been coming here ever since. She says she is feeling fine and she guesses you never really know what is in the plans for you. The conversation goes on and she mentions her daughter who is leaving for Africa with her church as a missionary soon. I mention that my daughter is coming home tomorrow from Africa after a month. We are looking forward to her being home. She says her daughter is going to work with young victims of human trafficking. I tell her about the House of Jjajja Don in Kampala Uganda and our work with young women rescued from the commercial sex trafficking in the slums. She is amazed and says her daughter is going to Uganda to work. We laugh and say God must have wanted us to connect today. We exchange names and contact info so our daughters can connect in the future. I look up and see that my nurse is back, She says, "Don't mind me I have been standing here fascinated by the conversation you too have been having." Both nurses are amazed. I then find out my one test was ordered in error and no one knows why it would be necessary and it is removed from the list of tests. The lady and I know who made the wrong entry which allowed for me to be there for a longer period of time and that allowed me to meet her and have our conversation. You just never know!
Mary and I go to meet with the doctor. I say I am feeling fine. Only reaction is a small rash on my back which seems to be controlled with a skin cream. Just a cheap excuse for getting a back rub I say! We then hear some more genetic testing info that confirms even more so that the metastasized melanoma is the one from my eye. Most skin melanomas have a gene defect in the BRAF gene. Occular melanomas do not and I don't have that one in my test results. Occular melanomas on a 50% basis have a defect on the GNAQ gene which I do have. So now we are pretty sure it is the rare ocular choroidal melanoma that has spread through out my system. Once again we hear that is is an extremely rare cancer and that they really have no known protocols for any effective treatment. The one I am getting is their best hope for a response with 13% of patients having a positive reaction to the drug. The Dr says we will keep you on this course as long as you can tolerate it and the tumors show no further signs of growth or spread. If they do then we can move to a different course that has more side effects but they really don't know if it will be any better in the long run. Mary and I leave and start to laugh with each other and decide that as usual my life seems to be a statistical crap shoot and we will just have to play out what ever the odds are?
I have my first set of scans next Wednesday to see if there is any change in the tumors. We are told that quite often there is a "flare" in the tumors from the initial treatments. The tumors may appear larger and more aggressive. But not to worry as that is expected. The second and third scans after three week courses of treatment will be better indicators of the tumor reactions as long as I can tolerate the treatment. It all seems to be a SWAG but I guess I accept that and hope the treatments work. In the meantime, we have to go on with living life each day.
I cannot tell you all how much I appreciate the prayers, calls and well wishes you have sent to me and my family. In between my naps, you give me hope and courage and for that I am eternally grateful!!!
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