Today I want to share more about the first consolidation therapy as part of the treatment for Acute Myeloid Leukemia. If you recall, I was told I would need three to four rounds of consolidation chemotherapy. I was blessed to be home about two weeks following the month of Induction before I had to report back to the hospital. During my time at home, I was able to enjoy Thanksgiving, watch my son at a swim clinic (granted, I had to wear a mask and did not stay very long, but I’ll was grateful), do some scrap-booking, do lots of plenty Christmas shopping, cuddle my family as much as they could handle, and even pick out a Christmas tree.
My husband and I arrived back at the hospital late in the afternoon on my 48th birthday, and was greeted by the nurse practitioner who began to list off all kinds of risks and side effects of the ‘HiDAC’ treatment. After a minute or so, I had to interrupt her and ask her to clarify everything she was talking about. I did not understand what she was saying. My husband did not understand what she was talking about. How could this be? She seemed surprised we weren’t aware as well. Here is where I feel patients also often feel powerless and angry when it comes to medical treatment: lack of knowledge and preparation by the medical community. Don’t get me wrong, I believe my medical team has the greatest of intentions, but what is a common practice, almost a mundane task to them, is far from it for the patient and their family. We need to feel empowered by being educated ahead of time, and told of anything we can do to prepare.
As we learned right then and there, following the induction chemotherapy, you will now have chemotherapy where you get 4 hours of high dose chemotherapy, twice in a 24 hour period, for 5 days, rather than the low dose for 24 hours a day for seven days, that I received during induction phase. This would then be followed by the same 14 days of targeted therapy I followed during the Induction phase.
She told us that during these HiDAC consolidations that I would be given a series of neurological tests before each dose of chemotherapy, along with steroid eye drops. The control and optimism I felt when I walked into the hospital room that afternoon was diminished. I felt scared, unprepared, and was dreadfully sad when my husband left to go home to the kids. I decided then that I would not spend my first night in the hospital alone again. Don’t get me wrong, I did want my husband to go home as he needed to be with the kids, but I knew that I would ask a friend to be with me from there forward.
By the 4th day of the HiDAC, I had a fever and a rash, but otherwise was doing well. Due to the fever, I was poked and prodded a number of times as the doctors worried about infection. Yes, I had a Hickman line for blood to be drawn from, but they also take blood from your peripheral blood steam, and, well, swipe samples from just about every orifice you have. They also started me on antibiotics as a precaution, and would not allow me to leave the hospital until the fever was gone for 48 hours, and all tests came back negative.
The best part, if you can call it ‘best’ of this first round of consolidation, is that I was able to be home in time for Christmas, which was my main goal. I felt blessed to have not felt any neurological ramifications, but did wonder about what other side effects may emerge with subsequent rounds of the consolidation chemotherapy.
Leave a Reply