So I got discharged on Monday after being in the hospital for a little more than 3 weeks. I denied the obligatory wheelchair ride out of the hospital; I wanted to walk out on my own two feet and that’s what I did. I also convinced Jenna and my mom to let me drive home. Of course my mom was concerned if I could drive because of my PICC. We made it home safe and sound.
My first request was to let me go into the house first, find Chloe and let her know I was home for a while. We spent a few minutes together, she rubbed herself all over me, plopped down on my legs and like any good cat, expected me to rub her belly, I obliged.
Before I got home, my house was cleaned top to bottom every surface was sterilized. When my cleaning lady found out what was going on, she volunteered to come on a Sunday to make sure the house was safe for me to come home to. Jenna washed all of our sheets, blanket and towels in between working and visiting me. Of course, my brother Brian did all the heavy lifting.
Going home was definitely scary, as an in-patient everything is taken care of for you. Leaving meant I was accountable for taking my meds (the right meds at the right times) checking my temperature regularly and caring for my PICC. My discharge paper work was pretty thick. It had a list of instructions for my meds and a doctor’s pad worth of prescriptions to be filled. I also had a huge bag of medical supplies I would need in the house, from alcohol pads to PICC flushes.
Lucky for me, I also left with a private nurse. As most of you know Jenna is a RN and works for Thomas Jefferson University Hospitals at Methodist Hospital. She totally knows what she is doing, not that I was really surprised but having never been sick or been in a hospital, my only interactions with nurses have been the people who take my height/weight and blood pressure at the doctor’s office. So, I am proud to say I have a JEFF nurse at home with me every day/night. It lessens a lot of the anxiety of having to do some of the medical things I need to do daily like flush my PICC, sort my meds and give myself injections. I just recently started giving myself my injections; it was too much to ask her to stick me a few times a day, plus I had to learn to do it myself.
Also this week, I had my first outpatient experiences, including my first visit to the doctor and the infusion center. As an inpatient, I saw my teams of doctors everyday when they rounded during the day. Not seeing a doctor for a few days was strange, so seeing Dr. Kasner as an outpatient was really great. I think she is a terrific doctor, she tells it like it is, no bullshit. During my appointment, she set me straight on a few things, told me I was becoming a germ-a-phobe and that I was allowed out of the house. Actually she told me to get out of the house, so time to hit the matinée circuit between daily trips to the infusion center. Any recommendations?
The Infusion Center is a very scary place. There are varying levels of sick and healthy people. It’s a scary place especially your first time and being a new germ-a-phobe, I wore my mask the entire time, every time someone coughed, sneeze, etc, I had an anxiety attack and moved away from them. At one point, I asked the nurse to move my chemo chair to another location so I could be isolated. All of this was ultimately unnecessary because…How bout some good news: I am no longer neutropenic, which means my immune system can now fight off stuff on it’s on. It’s not a free pass to be careless; still no snotty kids, crowded places and I need to avoid the heat. I am being vigilant about washing my hands and using Purell and I am still keeping the house a clean safe place, so no visitors in the house yet.
I also starting reaching out to other people in my situation, there are two buddy systems I have contacted, one run by the Leukemia and Lymphoma Society and the other by Jeff. Both match you with someone with the same diagnose and similar age, so I was connected to this one woman and we spoke for hours, it was very helpful. I also found a professional to talk to, who was recommended by my oncologist, and deals with cancer patients. I have an appointment with him next week, I am really looking forward to it.
Anxiously waiting for day 30, which is fast approaching, I will talk about all that next week,
Down with disease, Three weeks in my bed
Trying to stop these demons that keep dancing in my head – Phish DWD