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Danielle was diagnosed with AML in January of 2020 when she was 53 years old. She reached remission after chemotherapy but then soon relapsed. Danielle recently had an allogeneic stem cell transplant and is currently home and now 25 days post-transplant! She shares insights about her experience and thoughts in order to help others who are planning to have an allogeneic stem cell transplant.
When I relapsed, I was basically sat down by my doctor and told, “You have two options. You can go into hospice care or you can move forward with a transplant. How do you feel about that?” I said of course sign me up for the transplant. It wasn’t really a hard decision for me. I wasn’t ready to give up. I was ready to continue to fight AML hard.
A year and a half ago when I was diagnosed with AML I was told I was intermediate-risk and that I could be one of the lucky ones that gets cured from just chemotherapy. I thought this was great news. However, I was also told that there was a risk of relapse because this happens to a lot of AML patients. I did the chemo, got into remission and believed I was cured but always kept the risk of relapse in the back of my mind so I would be mentally prepared if this were to happen. Six months later, relapse became my reality, but I was ready to move forward with treatment and do the stem cell transplant.
The worst part of the process is the side effects from the conditioning chemotherapy and the tacrolimus, not from the transplant itself. The actual stem cell transplant is less exciting than getting a blood transfusion. With the conditioning chemo, I lost my appetite, my sense of taste, and some of my sense of smell. This made eating difficult. I also got so nauseous that I ended up getting a patient-controlled analgesia pump which gave me tiny amounts of Dilaudid. I really needed this because my GI tract was completely destroyed from the chemo.
Another side effect of chemo is that you can wake up in the middle of the night completely drenched in sweat, like you just took a shower with your clothes on. If this happens, you need to get out of those clothes. Call the nurse and have the bed sheets changed. These are all things you need to be prepared for.
1. One of the biggest things that I noticed as a patient is that you are not always going to have your bed changed as often as you should. The bacteria that we have on our bodies can cause us so many problems. So making sure that we practice good hygiene is really important. A good nurse will say to you that no matter how you feel, we're going to get you in the shower and your sheets and clothes need to be changed. It’s the little things that you think are so benign that become so important. Make sure that the hospital room is wiped down and that you get your bathroom cleaned. During my hospital stay, sometimes the staffing wasn’t so great and the nurses didn’t have time to attend to all of these details. Stay on top of asking to have these tasks completed or have somebody there in the hospital with you to speak on your behalf. Make sure it is someone who will really watch after you. Having an advocate is really important.
2. Be mentally prepared. It’s going to get ugly. You’re going to have diarrhea. You will lose your hair. You’re not going to have your makeup on every day or maybe even at all. You’re going to get very sick and it’s going to be tough. Make sure you understand and prepare for the harsh realities of what you are about to go through.
3. Communicate with your nurses. Tell them exactly what you need and don’t be shy. Press the call button. Get the nurse to help you anytime you need it. However, if you are able to do certain things safely on your own, do them so you can get in some exercise.
I interacted with all my supporters, friends and family. I used Facebook as a way to touch base with all of my friends across the country. I was open with my situation and told everyone on Facebook that I was diagnosed with AML and educated them on what this meant. I told them I would keep them updated on how everything is going, and that I would stay as positive as I can.
I found out early on that people want to support people who are positive. It’s much more difficult for your friends and family to support you if you are giving up or are really negative because there’s nowhere for that support to go. It's hard for someone to support a person who is not open to support or positivity.
I felt like I couldn't do this without my friends, family or husband. I think it’s important to identify who or what you want to live for. For me, it was my husband, but it’s different for everyone. It could be a friend, a dog, a son or a daughter. Just like I had two choices with treatment: hospice or transplant, I also had two choices with my attitude: positive or negative. Negativity is going to make your journey really hard. Negativity is going to make your body hurt more. You’re going to be more emotional. Negativity becomes a downward spiral that you can’t afford because it zaps your energy to fight and heal. So whether or not you feel positive, you have to fake it.
Whatever happens, being positive makes for a much more joyful experience compared to the person who is just deathly afraid. When battling AML, fear is the worst thing you could have. In this process, you have no choice but to be positive. You should allow your feelings. Cry when you need to cry and do whatever you need to do but at some point you will finally come to a place where you have to have faith in your doctors and yourself. It's okay to ask questions because this is your life, but try not to let the fear take hold of you because it’s not going to help you. You’ve got to become strong, brave and look at the positive in everything.
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about the author
Katie joined the HealthTree Foundation as the Community Director for AML in 2021. She is a registered dietitian who previously worked at the VA hospital in Dallas, Texas where she coached veterans with blood cancer on how to use nutrition to improve their treatment outcomes and minimize cancer-related side effects. Katie is passionate about health education and patient empowerment. In her spare time, she loves to experiment with new recipes in the kitchen, spend time running outdoors and travel to new places.