Leukemia Research Foundation News

Diagnosis, Treatment, Remission. Pause, then Repeat.

Written by Jill Glasser, an acute myeloid leukemia patient

How it started…

Sunday, November 26, 2017, my sister and I were in Savannah, Georgia visiting with my daughter and grandson. I fell asleep the night before, not feeling well, and woke up with a fever. It just got worse from there. I did not feel well for a couple of weeks, visited my doctor three times in 10 days, and never improved. I was having a hard time climbing stairs, which was so odd. I never took an elevator; I did not like them. On Wednesday, December 13, I called my best friend and said, “I have been to the doctor too many times, and I am not getting better. Will you take me to the hospital tomorrow?” And she did.

When I started thinking of what to talk about when writing this story, I suddenly remembered so much. I have spent the last couple of years trying to put it out of my mind. But there are things that I will never forget. Let me start by telling you that I was initially diagnosed with acute myeloid leukemia (AML) on Thursday, December 14, 2017, at 11PM in a hospital room. The sweetest angel of an oncologist sat on my bed and said, “Jill, you have leukemia, but you will be alright. I am sending you to the Medical University of South Carolina (MUSC) in Charleston first thing tomorrow. You will be treated by the same doctors who cured my daughter’s leukemia. You are going to beat this!” These are words I will never forget.

The Signs

But let me back up a little. A couple of weeks before my diagnosis, I woke up with a high fever. I knew the night before that I was not feeling well, but I never thought it would be leukemia. I do want to mention a few other odd things. I had been having an issue with hair loss for about two years before this. I went to see a dermatologist about it, and I know that no one thinks this has anything to do with it, but this was my first indication that something was not right. And immediately after waking up with that fever, I got a sore in my mouth and then noticed a few bruises on my legs that I thought were not right. So, there were signs of things not being right, but never did I think I was as sick as I really was.

So, back to December 14, 2017 when I was diagnosed. The very next morning, I was transported by ambulance (my first time ever in an ambulance, but unfortunately not the last) to MUSC Ashley River Towers hospital, two and a half hours away. My life was about to take a huge turn. I never saw it coming and had no time to prepare. 

Treatment Begins

Ok, now back to my diagnosis and treatment. I started a month-long stay in the hospital two weeks before Christmas 2017. It all seems like such a blur now. There are many things I can say about my first treatment phase. It was not as bad as it could have been. All those weeks of chemo did not take it all out of me. In fact, I never got sick once, and I was out walking around the hospital every day (mind you, this was pre-COVID). My next stay for stem cell transplant was not as easy. The hardest part of my first round of treatment and hospital stay was losing my hair and not having an appetite. I needed to gain some strength, and being bald was a new reality. After about four months of treatments, numerous infusions/transfusions, and a few setbacks (infections), I was in remission. For almost two years, I was cancer-free and trying to forget leukemia. 

During my first treatment, I had months and months of appointments, infusions, bloodwork, and biopsies. After about six months, I returned to a somewhat normal life and to work. Then, in January 2020, I was truly shocked to find that at my two-year checkup, my remission had ended, and the leukemia was back. I was now facing a stem cell transplant. This was a big discussion and a huge challenge and required so much planning. I was scheduled for my transplant in March 2020, the same week COVID was declared a pandemic. I was panicked for so many reasons. My sister, who flew from New Jersey to stay with me for a week in the hospital, could only stay one night. The hospital was on lockdown, and I was no longer allowed to have visitors, leave my floor at all, or leave my room without a mask.

After my transplant, I had to rent a house to stay near the hospital for 100 days. There are so many rules for stem cell transplant, and they are strict. I had to have a caregiver who could commit 100 days to be with me. Luckily, my 27-year-old daughter was not working, so she and my three-year-old grandson and two dogs stayed with me. It emptied my bank account and nearly killed me. 

This go-round with leukemia, I got so sick and weak. I threw up constantly. I could not eat or drink and lost my hair again. I was so tired and scared but made it through by never giving up. And after about four months, I took a turn and began to get better. During this time, I lived on these hydration freeze pops. I took them everywhere I went. I took one to the hospital with me for all those every-other-day visits and infusions. If I could have kept them frozen, I would have eaten about a dozen of these freeze pops a day. It seemed to be the only thing I could tolerate for weeks. 

So Grateful

Today, it has been a little over two years since my stem cell transplant, and I feel exhausted but so blessed. I will never be my old self again, but we all grow older. I just feel like I got a 10-year boost in that area. I have exhausting fatigue and pick up every little cold or bug I’m exposed to. But I have a wonderful job, wonderful family and friends, and most importantly, my life. I AM SO GRATEFUL!

I often think about how I made it, all thanks to the talented and gifted doctors, nurses, and everyone who helped me. I had such a great and supportive team. My family and friends never gave up on me, and for that, I will be forever grateful. It would have been so easy not to fight if I did not have so much to fight for. 

Well, I can honestly say that after almost five years of fighting this battle, I don’t think too much about everything I went through. Sure, it crosses my mind when I am not feeling well. I still get scared on days I don’t feel right. I still have the fear that it may return one day. But more importantly, I have learned:

  • Give as much as you can to others
  • Be thankful for each day
  • Be the best kind of person you can be
  • Be kind
  • Help others whenever possible
  • Have faith
  • Stay positive, always try to find the good in things
  • And most importantly, live life

Leukemia hits hard and fast. Maybe it is good that I did not have time to think about it.  

I could not do this alone, and I did not get through it alone.

Jill (center) with her two sisters.

Subscribe

Blina may be effective in first-line treatment of Pediatric B-ALL

Leukemia Research Foundation Awards $2.4M in New Investigator Research Grants

Pre-transplant gut microbiome may influence likelihood of GVHD