Living on a Prayer

So there I was. It was Friday September 26, 2014. If you’ve been in a hospital on a weekend, you know that not a whole lot gets accomplished and major decisions rarely get made unless its an emergency. The bone marrow biopsy I had done at my local hospital wasn’t good enough for Loyola and they wanted to do another one. They told me I wouldn’t have an official diagnosis of what type of AML I had until Monday. My initial meeting with the team of doctors who would be saving my life was terrifying. I had so many questions and, up until this point in my life, no major health issues. I wanted to know how I ended up with cancer. Would it be painful? Would I have side effects from chemo? Would I be the same person when I went home? Would I even go home? Three questions seemed to be the most urgent to me. 1) Is this hereditary and would my boys be at risk? The doctors assured me that AML was not hereditary and my boys were not at a higher risk. That was the first sense of relief I’d felt in over a week. Finally, some positive news. 2) Would I survive? Will I be able to raise my sons and grow old with my husband? This was the most troubling question because, as i’ve learned, doctors will not give false hope. In actuality, they don’t seem to give any hope. Doctors give facts and figures and statistics because its backed by science. The statistics were disheartening. Something like a 65% survival rate is what I was told initially. 3) Can this be cured? Again, no hopeful answer from doctors. I prayed and prayed and prayed for hope, peace, comfort, help, answers and most of all survival. If I wasn’t sleeping or crying, I was praying. You’ll find this to be a common thread throughout this story. God was with me through all of this. I can’t wait to tell you how He worked things out for good in this hard situation. I couldn’t see any good in September of 2014 but truly there has been many blessings from this. Stick with me and you’ll see.

I couldn’t wrap my head around my situation. Frankly, I was still numb. Nothing made sense anymore. I wasn’t angry or scared but I was full of disbelief and everything felt surreal. It was like a horrible dream that I kept trying to wake up from. Since I couldn’t do much to help my medical situation, I did everything I could to be a mom to my boys without being home. I wrote lists and instructions and emailed them to Dan and his parents and my mom. I wrote about the boys’ routines, favorite foods, bedtime tricks, where to find things in our house and countless other “helpful” tips for whomever was caring for the boys. I also contacted some of Dan’s closest friends and asked them to please take care of Dan and check on him. I could handle what I was experiencing but I wanted everyone else to be ok too. I wanted my boys’ routine to be as normal as possible and Dan to be home with them as much as he could.

Although it was hard to sit with uncertainty in a hospital on a weekend, it was the first of many blessings God had for us. Because it was a weekend, childcare was not an immediate issue. We had a second to breath and think. Dan spent many hours that weekend with me but I also wanted him to spend a lot of time at home with the boys because I was very worried about them. What were they thinking? What were they feeling? Would they remember me if I died? Who will take care of them? Since Dan is a teacher, he had sick days built up and was able to use some to be with me. But we didn’t know what the future held and I wanted him to work as much as he could in case he needed to be with me later. At the time, I was stable and in good hands. My mom was with me a lot and friends visited. Dan’s parents and aunt and uncle lived 2 miles away from us and they went into full grandparent mode and took care of the boys day and night while I was away and Dan was trying to be a teacher, husband, father, and deal with all of the insurance and bills and doctors. At least I knew my boys were being loved and taken care of while I waited for further news about my future.

At this point, I need to give you some disclaimers. My main goal of writing this blog is to share my story with anyone who is experiencing AML or stem cell transplant themselves or as a caregiver. I promise to be as accurate as I can be. I promise to do my best to answer your questions if you contact me. I promise not to sugar coat anything. Nothing about this was fun or easy. Doctors like to say things like “its not that bad” or “its a quick procedure” but they’ve never experienced it first hand. I have. Some of my entries will not be in chronological order because honestly, I don’t remember what happened in what order. Many of my posts will be about the emotional side of AML but I will try my best to be informative about the physical experience as well. Finally, I am not a medical professional. Please do not take anything you read in this blog as medical advice. It is simply my story of my experience with AML. Every person is different as are treatments, reactions, genetic markers and subtypes of AML. I thank you for taking the time to read my story and I hope that it will be of some help. Oh, and I will do my best to update regularly! I’ve also made Dan an administrator of the blog so you may find some posts from him giving his perspective.