I found this online journal, CarePages, where Victor and I documented my stem cell transplant. I keep going back to this one particular day, October 17th, 2005. It was one of the most terrifying yet life defining moments in my life. I had woken up from an extensive life saving thoracic surgery for what is quite commonly a fatal fungal illness, Invasive Aspergillus that had tremendously infected my body during transplantation attempt while I had zero immune system. It was a very high risk surgery to begin with. My surgery did not go as planned either. When they opened me up I was far worse than they ever imagined… but reading this I remember what a fighter I was. I hated that stupid ICU and desperately was begging to get back on the 5th floor, the bone marrow transplant floor, or my “comfort zone” as my new thoracic surgeon called it. I remember at the time I hear him say this to me, thinking to myself, “If my “comfort zone” is now the bone marrow transplant floor at City of Hope hospital, my life has certainly sunk to an all time low!” I remember my reflection in the glass doors, seeing in my bald head, swollen body, chest tubes, plastic tubes, Iv poles and bags everywhere, electronic equipment stuck to me and around me making loud screeching noises, and just feeling like I was the ugliest human being on the planet. I was so incredibly sad, despondent, and felt so unlovable. I was terrified I would never see the outdoors again. I was terrified I would never see the outside of the ICU again. Pathetically enough, I thought I would never know was it was like to feel pretty or even happy ever again. I had Victor put photos of the “real me” up on the walls in my room that day, and I made sure everyone taking care of me, knew this ugly monster that I was presenting as was “not me” and would point to them the pictures of me skiing and having fun only a year before and cry “See that’s me, this isn’t me!” My mind could not reconcile what was happening, I could not understand what this horribly sick thing was, I had turned into, and I was in a state of shock. I was only 36 years old.
Hi from Peg :
This note will be short as I am really tired tonight and still recovering. It may not make sense as I am really medicated as well. Victor snuck the computer into the ICU (they are not allowed and neither are cell phones but the nurses have not said anything yet). By the way the city of hope phone number is 626-359-xxxx and I am in the ICU listed under my name.
The charge nurse notified me the night before my surgery that indeed not only will I be having my case added on the next day but that I will also be Dr. Kernstine’s first case of the day (I was really hoping he got some sleep the night before). What began as a 4 hour somewhat risky case became an over 7 hour much more risky case with a lot of unforeseen problems. When I woke up from surgery, I was told that from the moment that the doctor opened me and spread my ribs, that there was Aspergillus everywhere, all over my lung, and it was beginning to invade my heart and my major and minor pulmonary veins and arteries. Dr. Kernstine decided once he saw this that his main goal was not only to remove the upper lung but to investigate and remove any fungus or other problematic tissue that he could find. In the process of doing so, my pulmonary artery collapsed and separated in Dr. Kernstine’s hands which led him to infuse 4 units of blood into me to replace what he was loosing while he was suturing and extracting all of the unneeded upper lobe. In addition, he quite frankly told me he was shocked at the extent of the fungus infection. Dr. Kernstine, in so many words, made me feel that my situation had been much more extreme than he had thought prior to the surgery. He told me that it was likely that coughing or even laughing, had we waited any longer, could have ruptured the already limited and invaded pulmonary artery and that death would have been immediate.
All my doctors came in and visited that evening in the ICU, which I hate. It’s not that the rooms are bad but everything is more limiting and extreme here. Also, when I first woke up, I looked to find 14 individual IV bags plus a pulmonary tank and a chest tube chamber, 3 chest tubes sticking out of me, a urinary catheter, and a bunch of EKG lines and a bunch of other stuff stuck to me and a bunch of bright and beeping screens that made a lot of noise. When I wanted to sit up to go to the bathroom, the nurse practically laughed at me and said, “This is the ICU, not the 5th floor. You just sit there, that is what the catheter is for.” The idea of just laying here and doing nothing and not being allowed to move made me panicked. I devised a plan that I must prove that I not the kind of person that belongs in ICU and this has all been some crazy mistake. So I have done everything I could, little by little, increment by increment, to do whatever was necessary to remove every feature I absolutely hated (which is pretty much everything) and restructure my path back to my room on the BMT floor. So far, I have been measurably successful. Today I made sure that I had my nurse chart that I was up in my chair for most of the day and I went for 2 walks totaling about 4 rapid rounds around the perimeter of this hospital floor. By the way, my first plan was to devise a way to get rid of the urinary catheter. I need not explain the desire for that. I was successful within the first 12 hours. I think I am still a little shell shocked from what we discovered in surgery last Thursday. However, I have NO idea what out time frame looks like and where do we go from here. Whether or not I stay here and continue treatment is unknown to me as well as will they want me to heal from this procedure and then want me to come back later. It is truly up in the air. As soon as I have more answers, I will post them here.
I wanted to thank everyone for all their posts during the time I was pre and post procedure and quite nervous. Your sentiments helped me bring down my stress level. As usual, Victor read them to me when I was completely unable to do so myself, and they were read considerably more than once. Also, I have picked up on some of Victor’s ability to become popular on the floor. My friend Lori sent me 2 little soft Halloween pumpkin heads which hold candy (currently jolly ranchers). When I walk around on the floor, Victor usually has them filled so that I can offer treats to the staff. When I am in my room, they hang on my IV pole so my nurses can come in and get a snack (or take the entire pumpkin head around the floor and bring it back later, usually empty). I’m going to bed now. I just hit my green pain killer button.
I love you all