Today was my first appointment since discharge from the hospital. I have felt remarkably well, with really no adverse side effects. Only once in the hospital did I get nauseous and actually dry heave. I have continually progressed with my activity, walking up to one mile yesterday. I am self-isolating from people with the knowledge that my counts will likely drop and I will be highly susceptible to infection. That being said, I was certain going into today's appointment that I was doing really well based on how I felt.
Do I feel normal? Not even close. There is an odd sensation when I stand up, I definitely know I am not totally healthy, but I still seem to have energy and it is getting better with the days. I have stopped taking my antiemetic as I figure if I am not sick why do I want an unnecessary drug in my body.
Yesterday when I woke up it felt like my muscles had the flu, this was really as bad as it has gotten and I just worked through it, literally, I worked from home yesterday and today.
When Dr. Arteta came in to give me my results today, he was really surprised my counts had dropped to zero. I literally have no immune system. This was quite defeating. I had felt so good and was so proud of myself through this week that I had figured my immune system would reflect that and I would be the one whose numbers didn't bottom out. Nope. Not the case. I was staring at 0.03, no immune system.
Another crazy event with this round of chemo is that when I left the hospital I had gained 16 pounds of fluid from all the bags of drugs and blood given to me. I literally jiggled when I walked. I had so much junk in my trunk that the only thing I could wear were pajamas and they were hard to get on. I have been laughing about giving birth with less weight. Today, six days after leaving the hospital, I have dropped 21 pounds. Yes, that means five actual pounds of weight. I sent my mom on a "bad for me" shopping spree while she picked up more medications from the pharmacy for me. She dropped off chips, pretzels, cupcakes, puddings, cookies, fruit cups, Mac and cheese and cottage cheese - all very fattening choices. I am back to the point at 97 pounds where it doesn't matter what I eat, I need to gain some weight.
Tonight is Jody's parent's 60th wedding anniversary dinner and their relatives from Holland, whom I have never met, flew in for the event. Dr. Arteta did tell me that it would probably be okay to go as long as I was careful, however, I wasn't sure I could control the health of the potentially hundreds of people in the restaurant or the preparation and service of the food. I chose my health and maybe my life, and have stayed home. This is very difficult for me because I had all but convinced myself that I was making this party. I had to remind myself in that brief moment of self defiance toward my health when I contemplated going to the dinner, that my life could be on the line.
The scariest part of all of this is the potential for infection. Dr. Arteta has now prophylctically added an antifungal and an antibiotic to my antiviral and numerous other drugs. Now, and perhaps it is in my head, I feel warm. I feel like I am trying to stave off a fever. I have checked my temperature every hour or more and it is currently 99.7; at 100.5 I must go to 4-South, the oncology floor at St. Luke's. We cancer patients apparently skip the ER and just go directly to admitting ourselves back onto the cancer floor. I am hoping that this is just my body trying to recover from hitting rock bottom. As wonderful and kind as the providers are on 4-South, I really don't want to go back there until my next chemo July 10.
So with these new developments, I am still going to continue with my isolation. It is best for me and while it may seem a bit extreme given all the drugs I am on to fight infection, I am not willing to risk my life for a visit.
I love you alll and appreciate your continued support. Please remember, give blood and plateletts, people like me now count on that for survival.