A Very Long Week

I wanted to let everyone know what has been going on with Erika since her last blog post. Here is a short rewind of what has happened over the last week.

The doctors have been stumped for a while about what has been going on with Erika and the issues with her lungs and the excess amount of mucus, which has been affecting her breathing. They have been telling us all along that it was a fungal infection and have been giving her every combination of antibiotics for bacterial, viral, and fungal infections that are available, but Erika had not been improving.

It was decided that a lung biopsy was necessary to get a more precise answer as to what was gong on. Monday the 15th, Erika had a combination of procedures done to minimize her having to go back to the OR multiple times. Her Hickman was placed; a bronchoscope to remove more mucus from her lungs was performed; a piece of tissue was removed to get a better sample; and two chest tubes were placed on either side of her lungs to drain the excess fluid, which was accumulating between her chest wall and lungs. All the procedures were successful and went better than expected. As a precaution however, Erika was once again taken to the ICU where she spent next two nights. I was able to see Erika that first night, although she doesn't remember my visit. The next day she looked much better than the last time she was in the ICU.

Erika came out of ICU on the 17th and we were back in our old room, which was nice since we didn't have to move everything and we were still in a single room. Later that evening we ended up getting transferred to an isolation room on the same floor because a skin biopsy done two days before determined that Erika came down with a case of shingles.

Later that night Erika had a lot of pain from the two chest tubes and was on some pretty heavy pain medication. There were nurses in and out of our room all night long and people looked really worried. I guess the pain medication was too much for her and it slowed her breathing down to dangerous levels. They ended up giving her some medication that removed the pain medication from her system so her breathing would come back to normal.

Thursday morning I was awoken by Erika's oncologist, Dr. Jacobs. She told us that they had the results from the lung biopsy and that things did not look good. The lung biopsy showed that what was in her lungs was most likely entirely disease and that it had looked more aggressive than before. Both of us were stunned and confused because all along the doctors had been telling us it was fungal and not disease. Dr. Jacobs said that Erika did not have that much time left, maybe days at the most. She wanted to know what we wanted to do. Erika was in a lot of pain at that moment and told her doctor that she just wanted to be comfortable and not try anything else to stop her disease. Family and friends were called and all loves ones surrounded her stunned. Honestly I was so stunned that I don't really remember that day.

Later on that night out of nowhere Erika awoke from her sleep and changed her mind. She decided that she wanted to fight, like the fighter she is and always has been. We spoke with Dr. Jacobs in the morning and made the preparations to start a weekly chemo called Taxol. We were told that the chances of Taxol working were 5-10%, but nevertheless, Erika will hope for miracle and that she's one of those 5-10% that will respond. There was a slight problem however; the attending oncologist on duty was unwilling to give Erika the chemo while her shingles were still active. She said until the lesions were crusted over and no new ones were visible, chemo would be out of the question.

Finally after four days of waiting, Erika started Taxol on Monday. Erika has been making small improvements every day. She still continues to have daily pain from the chest tubes, which is being managed with pain medication. The right side chest tube was removed on Monday and they are talking about removing the left side chest tube possibly tomorrow, which should relieve some pain.

I want to let everyone know that both Erika and I appreciate everyone's love and support. I have been passing on your best wishes from emails and cards that everyone has been sending. I know a lot of you have been wanting to come and visit, but right now the best thing is for Erika to get her strength back and get some much needed rest. The hospital is a busy place which is not the ideal environment for people to rest. Erika has multiple teams working on her case, from Oncology, Pulmonary, Thoracic, BMT, the nurses and their assistants, Physical Therapy and Respiratory Therapy. It seems like someone is always in the room doing something with Erika and adding a lot of visitors on top of everything else just does more harm at this point.

I have been staying with Erika all of the time, except to do some needed errands and to take a shower. Erika's dad, aunt from Mexico, and sister have been staying with her during the day and my Mom and I have been taking shifts staying up through the night. The puppies have been at home and are being looked after by Erika's dad.

The long term goal is to get Erika out of the hospital and home when she is ready. We are making progress towards that goal each day, but they are baby steps. The plan for chemo is to get Taxol weekly followed closely with chest x-rays to see if any progress is being made.

I or Erika when she is up to it, will update the blog daily. I know she is a much better writer than I am and more descriptive, but I will do my best. I want to thank everyone again for all your love and support.