The week started off great. I had a holiday open house on Sunday and a lot of people were able to come. There was a steady stream of friends throughout the day and at no time was there too many so I got to talk to everyone. It was nice being able to eat good food, laugh, swap stories and just enjoy the company of others. I am only sad that many of my cyber friends are too far away to have come.
Unfortunately the good times were short lived. Last week after two rounds of infusion chemotherapy I decided to stop the treatment. This drug regimen was supposed to have fewer side effects, but it seemed just as bad to me. I had bronchitis the first week and thought maybe it was the cold that was causing me to feel so poorly, but the second week was just as bad if not worse. The nausea was horrible and I was unable to work a full day on two days, which for me is a big deal since I love my job.
I also decided I did not want to do any more diagnostic scans. If the scans showed good results I would want to talk myself into more treatments which I don’t want and if the scans were bad I would feel as though the treatments and feeling miserable were for naught.
On Monday I was notified that the trial for the oral chemo was ending and although I was not officially in the study anymore I was still receiving the drugs and unless I had a CT scan that showed there was improvement to the tumors the chemo would be discontinued.
So on Wednesday I had a lung CT. I got the worse news I could – the tumors have grown and a couple more have popped up. I am still reeling from the news. I knew in my heart that the results were not going to be good which is why I did not want to do it in the first place, but I never expected the amount of growth that has happened or new tumors to appear.
On top of it all the fluid in my lungs has been accumulating again, making it harder to breathe and I have been having chest pains. The doctor decided to drain the fluid yesterday. Over 2 liters of nasty cancer cell filled fluid was drained from the left lung and just under 2 liters from the right. I can’t believe I was walking around with over 4 liters of fluid in my lungs. The doctor predicts that the fluid will continue to build up and the procedure to drain the fluid most likely happen on a routine basis to make it easier for me to breathe.
There is no way of knowing how much time I have left, but without a treatment that is working it could be a matter of months. I am all about making this time the best possible – focusing on quality of life and enjoying the little things. However, there are preparations that must be made and things to be organized, many of these things are not pleasant to think about.
The big one is one I started this afternoon. I met with someone from Gilcrest Hospice. Several people have encouraged me to reach out to them sooner rather than later to start the dialogue before it is an urgent situation. The meeting went well. I received a lot of information about how it works and the processes, it was just really hard. I cried for a little bit after she left. I do not want to think about it, I do not want to need it, but I am happy there is a service like that so I can leave this world with dignity and peace. I am going to go visit the facility, but it sounds like I will be able to stay in my own house until they are unable to manage my pain and breathing appropriately.
I still cry all the time and I am trying to accept that I will probably cry everyday for the rest of my life, but in some ways things are getting easier. Yesterday was hard - basically had a really bad day, but I was still able to work and make a difference. I am coming to terms with my mortality and trying to focus on the good things. I am looking forward to seeing my nephews on Christmas day and enjoy the wonderment of the holiday through the eyes of a four year old.