September 5th. Sometimes, it’s Labor Day. Sometimes, the first day back to school after summer break. It’s always my birthday. This time it was labor day weekend and my birthday. Thirty five days in the bubble. I have to say that things were finally getting better. I could stomach certain foods like watermelon, honeydoo melon, goldfish crackers and pudding. They didn’t hurt my ulcered mouth or make me overly nauseous. Some good nutrients and fiber for my diet. This was my daily regimen.
This Holiday weekend I learned a lot about the 15th floor nursing staff. I learned to really appreciate their skills, their compassion, their love and their ability to lift up their patients hearts and alleviate their fears. Its a tough job all around. They see suffering and pain and death. They are tougher for it yet treat everyone equally and beautifully. Unless…unless its a holiday weekend.
When you lay in bed for thirty days with contraptions all around you and tubes from IV’s all hooked up to you, you become aware. Aware of everything going in and out of your body. Frequency of drugs. Color of bags, styles of needles and methods and talent. Well…during holiday weekends, your high intensity personnel become ghosts. Its their turn to take a break. Enjoy the beach, their kids, their hobbies, etc., forget all about their poor transplant victims. So what happens to the poor bedridden souls? The trapped in bubbles Leukemia patients? The lost kids?
Well…we get Temps. Temporary nurses. Fillins for a couple of days. Unfamiliar faces taking care of all the menagerie. It’s freaking scary! These nurses are not seasoned Oncology fellows. They are inexperienced grifters. At 2 am the first night a temp entered my bubble. She was carrying like four bags of fluids and rifling through all of my IV lines trying to decide what goes where. With one eye open, I watched in horror as she began to do exactly what she was not supposed to do. I immediately stopped her and asked to speak with the head nurse. The charge nurse came in and chased her out. It could have been ugly. I never slept after that night until Tuesday when the pros came back. And I let them have it.
When Monday came it was Labor day and my birthday. 35 years old. I laid there and wondered if I would make 36? My wife and parents came down along with some friends that came buy. My best two presents were…a beautiful photo of my Nicky. He was holding up a sign, a big smile on his face, that said “Happy Birthday Daddy- I Love You!” Best present ever!!! I also got a great present from Dr. Dave. A shower! The nurses were going to wheelchair me to a seated special shower with an alarm inside in case of emergency. I must have sat in that shower for 4 hours. Absolute heaven. They had to drag me out. I was moving along. I was feeling hopeful. The light was growing brighter. Dont let me fool you though, when it got dark, and it got late and it got lonely…the tears would flow. A lot to handle, too much sometimes.
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