time to post an entry 🙂
I took some time and unplugged and went off the grid while in the hospital and up until now. It was so hard for me to be in the hospital for 8 days. My kids had no idea what was going on, I had no idea what was going on.
I was tested and retested and pretty much had the hospitalists, the infectious disease doctors and my oncologists heads spinning. While there were findings in my lungs, there was nothing really telling the doctors why my fever kept spiking and why my blood counts were dropping and making me neutropenic. I was on so many different combinations of IV antibiotics and nothing was really working. They couldn’t tell if I had a gram positive or gram negative bacterial infection somewhere because all of my blood cultures were coming back negative. Every time my fever would spike, another culture would be done and there just were not any answers so they would switch my antibiotics. I was always on a combination of 3 antibiotics at a time and I was not showing improvement. I could not go 24 hours without a fever. The big question was about my port line. Was it infected somewhere? I was a day away from going into surgery to have it removed. Finally, I had enough, I couldn’t take it anymore. I love my doctors and love the exceptional care I get but a hospital is not a healing environment. It works miracles for emergency situations where medical intervention is required but I was just sitting in a hospital room while they were watching me because I have cancer. I know what precautions to take at home and I know what my baselines are and when I need to seek medical attention. What I was doing there, I could do at home in a much better environment. Plus, I desperately needed to see my kids. I convinced them to discharge me and my primary oncologist was not thrilled but I promised I would be careful and go straight back to the hospital if anything changed.
I do have bilateral pleural effusions and very weak lungs which is causing some chest pain but I no longer have any more fevers. The days where I forget I have cancer are few and far between right now because I am more symptomatic but I know eventually I will get back to where I was. I just need some time to heal. Coming to terms with the fact that I am not as strong as I like to think I am is not easy.
I have chemo tomorrow. I have to admit that it is the first time in a long time that I am actually scared and hesitant about going in. Last time I had treatment, they added a new infusion to help strengthen my bones called Zometa. Within 24 hours, I was admitted to the hospital. Scott is convinced that is what put me there. My doctors don’t think so. I don’t know what to think. I just don’t want to go back to the hospital. I know that I need this drug because of the cancer spreading to my bones, they have become weak. The chemo also weakens my bones. My calcium was dangerously low in the hospital so I am on supplements for that now. I know that I am at a high risk for a fracture if I breathe the wrong way. This terrifies me.
I just wanted to post an update and get back on the grid for a bit. I got to spend some quality time with my family in Maine this past week and it was so good for my heart to see the kids having so much fun after the week they had wondering why their mother was not coming home. I cannot express enough the gratitude I have for everyone who helped me out and/or offered their help and services. You all made this easier on me and my family and I am lucky to have an amazing pipe line of support. I will eventually find a way to pay this forward.
On particularly rough days when I’m sure I can’t possibly endure any more crap, I like to remind myself that my track record for getting through bad days so far is 100% because I am still here, and that is pretty good.
Love and hugs, Jessica xo