In October of 2020, I became sick with a sinus infection. After a 10-day dose of antibiotics, I was still sick, and the doctor gave me a stronger dose of antibiotics. Once I finished the five-day dose, I felt better, but every day I had a headache. After 28 days of continuous headaches, I decided to call the doctor again and let him know. It was a Friday, and he was off, so I was told to wait until the following Monday. Over the course of the weekend, I developed another sinus infection and lesions on my body, including on my uvula. It hurt to swallow, and I was becoming really ill very quickly. The doctor would not see me until I had a negative COVID test, and this was at a peak time in testing. So, I took a test and waited for the results. I finally heard back on Wednesday, and since I couldn't get into my primary doctor that same day, I went to the prompt care. I'm going to sidetrack here and tell you about my mom. My mother has been an RN for 30+ years, and she noticed that the sickness plus some bruising might indicate an issue with my immune system. So, she told me to ask the doctor to run a CBC with differential. While I was at the doctor, he informed me of the lesion on my throat and gave me a shot of antibiotics. I asked for the test, which he did willingly. I left thinking that would be that.
About three hours later, I got a follow-up call. My white blood cell count (WBC) was about 27,000. For those who don't know, normal is between 4,000 and 11,000. I was told to go to the hospital for IV antibiotics. So, I did. My husband could not wait with me until I was put into an exam room because of COVID. I finally got called back, and they reran the blood test, along with some other tests. About 10:00 p.m., my husband left to make sure our son (age 12) was in bed. The doctor came in to talk to me at about 10:30 p.m. He told me my WBC was up to almost 29,000, and it was very likely cancer. They were going to get a room ready for me in oncology, and all the additional tests, including a bone marrow biopsy, would be completed the following day. Luckily, since my mother lived close by, she was able to be there for a few minutes before I was moved out of the ER. I was moved into a room just before 11:00 p.m. At that point, there were no visitors.
November 19, 2020, is my official diagnosis day, acute myeloid leukemia (AML). Later we found out that it was an NP-M1 subtype. That day was chaotic. My platelets were so low that they had to redo the dressing for my PICC line three times because I just kept bleeding. I still had infections too that the staff was trying desperately to get under control. My mother worked at the hospital I was in, so she was able to see me for a couple of days until the administration said she could not do that anymore. The staff became my only companions, but they, like many nurses, were understaffed and overworked, so they gave me what time they could.
I started my seven-day, 24-hour chemo on November 21, but I continued to struggle with the infections. I was moved to intermediate care and then back to oncology once the infections finally subsided. My hair started to fall out, and the hospital allowed my husband to come shave my head on December 6. My next biopsy was scheduled for December 7, and we knew I had at least one more week in the hospital. When my husband visited me, I had a fever of around 100° F. I was so tired. Then I started being congested and developed a cough. On December 11, I got the great news that I had 0 blasts in my bone marrow, but they decided to give me a COVID test because of my symptoms. It was positive. I was immediately moved to the COVID unit where I was isolated as you can be. I was so weak that I was using a bedpan. I was put on oxygen, I developed pneumonia, and I thought I was going to die. It had been over a month since I had seen my family, but I persevered. I was determined to make it home. My goal was to be home for Christmas. I worked my way up to using a commode and walked from my bed to the door and back again. I went from 10L of oxygen to 0L in four days. I was released home on December 27, 2020.
On January 12, I had my third biopsy, still at 0 blasts, such good news. On January 25, I started my consolidation treatment. I developed floaters in my eye during my second week of treatment, so they postponed it until I did 28 days on an infusion antifungal. Luckily, they set me up to be able to administer that from home, but it did push back my treatment.
Throughout all of the chemo, I was never nauseous. I am so grateful for that. I treated the diagnosis like a challenge I had to complete, breaking the plan into days, and looking one day at a time. I did not research AML. My family did that enough. I had my last treatment on June 12, 2021, and my last biopsy on July 15, still all clear. I worked remotely during all of my consolidation treatment, even while in the hospital. It helped make the days go by faster.
I still worry every day, with every stuffy nose or random bruise that leukemia is back, but so far, so good. I'm getting blood tests every three months right now. I am a fairly active person. I missed out on so much during treatment. I am a Scouts BSA Scoutmaster for a boys’ troop and have been since January 2017. I had to take a leave during treatment, but I have been back since August 2021. I have been camping a few times and love to bike ride with my youngest son. I'm really looking forward to some time in the pool this summer and spending time with my oldest son before he goes back to college in August. I will celebrate one-year post-treatment this summer surrounded by my support team, my friends, and family who prayed for me, made dinners for my family, and sent me goodies while I was in the hospital and couldn't have visitors. I don't take anything for granted because you never know what tomorrow could bring.
Kimberly
acute myeloid leukemia (AML)
