Acute Myeloid Leukemia: The Importance of Consistency & Care

My last tale of Acute Myeloid Leukemia involved my first round of HiDAC treatment, and about patients feeling empowered by knowledge. This story is about the second round of consolidation therapy, and the unnecessary distress I endured. See, the previous two Leukemia treatments took place on the Hematology-Oncology Floor of the hospital. I knew the nurses, the support staff, the layout, the flow.

In was mid-January, the night before I was to be admitted, when the hospital scheduler called to tell me to check in tomorrow morning to the 14th floor. I was surprised and questioned why they would put me on the 14th floor, when I belonged on the 12th floor. I expressed my dismay and requested that they try to find me a bed, or have me wait a few days. The scheduler told me how this was a women’s health floor, and the nurses are well experienced in Oncology, and that it may be weeks for a bed to open up on the 12th floor.

I cried, I felt lost. I had my life suddenly changed in a threatening way, and so you look for the small things for comfort. One of those things was being on the floor with the nurses, other patients going through a similar process, and the surroundings I was used to seeing. The scheduler shared my concerns with the nurse practitioner, so she called and tried to comfort me, but I shared my feelings clearly.

Once I arrived, my husband and I decorated the room while the nurses came to and fro to take blood, get me settled, take vitals etc. When my husband left, I felt, once again, distraught but determined. I calmed myself. I prayed that this would be as good of an experience as it could be considering. I knew the treatment would be more challenging than the last as the chemotherapy builds in your body, and the body builds a stronger response each time. But I tightened my belt as they say, and was ready to focus on kicking some ass.

Unfortunately that evening, the difference in floors and staff experience was quickly evident. As I need two nurses certified in chemotherapy present to administer the drugs, but only one was certified on this women’s health floor. We waited two hours for another to arrive, from the 12th floor. The next morning, I spoke to a social worker about my experience thus far, and she was very helpful.

The nurse practitioner visited the next day, and assured me that things would go more smoothly from there on. It wasn’t the same though. I was rarely checked on, felt isolated, and that was only exacerbated by how sick I felt. I broke out into a rash again, got a fever, needed transfusions, and overall felt crappy. But it was during this time that I came up with my ‘mantra’ of the year, which is ‘Survive and Thrive’. Many select a word of the year each January, but I am going with a phrase. I also focused on the fact that I only had one of two more consolidation treatments to go, and was sure that from her forward, they would occur on the 11th floor.