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Lessons Learned as an AML Caregiver
Rob and Kerith's Story:
Rob was a healthy, active 42 year-old man. One day he complained that he had what thought was a painful hemorrhoid that had been bothering him for a couple of days. I suggested he go to the doctor, something he did not do often, and just get it checked and maybe they could prescribe some cream to help. He made an appointment, and the doctor confirmed it was a hemorrhoid but said there might also be an infection. The doctor gave him some cream but said that if the cream didn’t help to start taking an antibiotic and gave him a prescription for an antibiotic as well. The pain had gotten worse and was uncomfortable for him at this point. The cream didn’t help, and I suggested he take the antibiotics to see if that would help. He started having a reaction to the doxycycline, which had happened to me once before, it was over the weekend and so he stopped taking the antibiotic and I told him he needed to go back to the doctor and get a new antibiotic. At this point, he started complaining of the pain being all in his groin area and it was getting worse, he also started feeling a pain in his side as well. He went back to see the doctor and met with a nurse and she prescribed a different antibiotic. At this point he told the nurse the pain was going down into his legs and he felt pain in his side when he took a breath and it was hard for him to take a deep breath. The nurse said she could schedule him for a CT of the abdomen but it would be a couple of days for that. She felt his abdomen and did not feel any abnormalities. She sent him home but said, if at any point you have trouble breathing or a hard time catching your breath, go to the emergency room. That night Rob was walking around sort of hunched over. He said he felt pain in his feet too. He said the pain in his side was getting worse and he felt like he couldn’t get a deep, full breath. He told me what the nurse had said to him and he said I think I might need to go to the ER. Our 3-year-old daughter was asleep, so he drove himself to the nearby hospital, which was very close, about a 5-7 minute drive. He was texting me letting me know he made it, that he was getting checked in, etc. About an hour and a half later, he called me to say they think I have a blood disorder. Then another 30 minutes or so later, he called back and he said, they think I have leukemia and they are transporting me by ambulance to Yale Hospital. Rob’s white blood cell count was over 300,000 and his spleen was very enlarged, so the doctors at Yale started a dose of chemo the next day in order to bring his white count down. Rob spent the next few months in and out of the hospital, he did his first official round of chemo, the 7+3 regimen, and then waited for his counts to come back up and see if we could proceed to a bone marrow transplant. Unfortunately, after his induction round, the blasts came back and while we were meeting with the doctors and discussing next steps, his white blood counts were rising quickly. He was admitted to the hospital to take an oral chemo to bring his white counts back down and a day before he was supposed to come home, he experienced a brain bleed, an intracranial hemorrhage, while still in the hospital. After two days in the neuro ICU he needed to be intubated and his brain was dying. He was being kept alive by a ventilator. We made the difficult decision to take him off the ventilator on March 18th , 2018.
Receiving an AML diagnosis is a shocking and traumatic experience. While you and your loved one are just beginning to process the information and the diagnosis, you have an overwhelming amount of information being thrown at you and you often have to make treatment decisions quickly. While there is no roadmap for these situations, having someone to talk to who has walked that road before you certainly helps. There is so much that I learned in those short four months that Rob was sick and, of course, since then.
Here are eight lessons that I learned through my husband’s AML diagnosis:
1. Seek out a specialist immediately
Rob and I were lucky. The ER that he went to automatically sent him to Yale hospital and a specialist was assigned to his case. If you are not at a hospital where they have an AML specialist, find one that does as quickly as possible. We were within driving distance of major cancer centers and hospitals, so we had options. We quickly realized how lucky we were as the first week was very scary. Rob could have had a lot of complications and perhaps even died that first week with his white count as high as it was, so we were lucky to have a very knowledgeable team to get him out of danger. If I had known about a resource such as HealthTree when Rob was first diagnosed, I would have been on that at all hours of the day, looking up information, watching videos and educating myself as much as possible. Using the HealthTree site to find a specialist is such a valuable tool.
2. Get a Second Opinion
I think equally as important is getting a second opinion. People often feel like this is too overwhelming and time-consuming to do and prefer to just find a doctor and if they like the doctor, just go with that, but even if you like that doctor and they are a great doctor, it is still a great idea to get a second opinion. Second opinions can often confirm that the treatment your loved one is receiving is in fact the same
treatment that another specialist would recommend, which allows for more trust and confidence in the process. A second opinion can be different and in that case is worth looking at and doing research and understanding why the doctor is recommending something different and what the reasons are behind their treatment choice. A second opinion can be as easy as sending records to a doctor and asking the doctor to review the records and ask if they agree with the treatment recommendation. It doesn’t necessarily have to mean another visit to another doctor for your loved one.
3. Knowledge is Power
While the doctors are the experts, educate yourself as much as possible about the disease and treatment so you can advocate for your loved one to receive the best care possible. The more I knew and understood about the disease, the more I felt like I had some control. If I couldn’t take part in the conversations and the decisions that needed to be made, I didn’t feel I was taking an active part in my husband’s care and in order to do that I needed to learn as much as possible about the disease. This shouldn’t feel like you are cramming for a test or to put pressure on yourself, but to create a sense of empowerment for you and your loved one.
4. Write Your Questions Down
Get a spiral notebook or journal of your choice that is just for daily notes, thoughts and questions. Keep a running list of questions as they come up and prioritize the top 3 or 4 that you want answered when the doctor makes his rounds. It helped me to write the answers down and check them off as I got the answers, just because sometimes it is information overload. Even though sometimes you might feel like you have limited time with the doctor, you have the right to ask the questions, and as many as you want, and you have the right to get the answers. But I found I preferred to try to find what answers I could find on my own and save the ones I couldn’t find to ask the doctor.
5. Ask the Doctors the Difficult Questions
I don’t recommend Dr. Google, because there is a lot of misinformation out there, but I had done my own research and I knew from googling Rob’s diagnosis that it wasn’t a good prognosis, but I chose to believe that he was young and healthy and that he had a chance to beat the leukemia. But I look back and I wonder why the doctors were not more direct with me about how serious the situation was. I wish the doctors had been a little more direct about how bad his cancer was. I understand the doctors want everyone to have hope and that a positive attitude is extremely important in fighting cancer. And perhaps that conversation would have happened a little later down the line if Rob hadn’t died suddenly, but I wonder sometimes if the onus of delivering the bad news, aside from the diagnosis, has been taken off of the doctors due to the wealth of information that is made available to patients online. I was just so unprepared for this to happen, even though I knew with my husband having cancer that this was a possibility. I just didn’t realize it could happen so suddenly. While I don’t think the doctors can tell you every possible thing that could happen or go wrong, I think if I had known that Rob was likely not going to survive this cancer, I might have been spending my time with him differently. I believe you can still know your prognosis and still remain positive that you can still beat it. Cancer miracles happen every day.
6. Have the Difficult Conversations with Your Loved One
I think this is a very big regret I have. I don’t like to spend a lot of time regretting because you can’t change how it happened, which is why I feel strongly about sharing this part of our story with other people. Rob and I had gotten life insurance just a couple of years before he was diagnosed with cancer. I had suggested we go see a financial planner when my daughter was born, so we could get guidance on how much money we needed to put in a 529 plan while contributing to a 401k plan, etc. The person that had been recommended to me by a woman I worked with happened to sell life insurance. So his first recommendation was that we buy life insurance. Rob and I had never discussed that. Thankfully, we had life insurance when Rob passed. You would think that might have lead to other conversations such as having a will, but it didn’t. We did not have a will and I wish someone had asked about this while Rob was sick, because I am definitely a planner and I would rather have something in place just in case the need arises. I believe this would have opened the door to other conversations such as advanced care directives, DNRs, and burial preferences. I do believe these conversations would not have been easy for Rob to have. He was the eternal optimist and that is such a part of why I loved him, but I would have had the conversations because they were important to have. I think it’s important to know that some of these conversations are ones that we can and should be having with our loved ones before we are in a situation where we need to have them. But we should be having them when someone is diagnosed with cancer. It’s almost as if we believe that having the conversation about death will make it happen. I think we could have had the conversation and then moved on, back to fighting his cancer. I regret not having had these intimate conversations with Rob, the person I had pledged my love to, in sickness and in health.
7. Research complementary physical & emotional wellness options on your own
Some hospitals have social workers that will come speak to you about different services they may offer, but I am a believer that it is very important to take care of your body and your mind. There are so many alternative healing modalities that can help with pain and stress management, I am a big proponent of finding something that appeals to your loved one, and to you, and encouraging that. Whether that be walking laps around the hospital floor, meditation or guided imagery or listening to a positive, uplifting audio book or podcast. Rob was not one for any alternative healing, but he was open to the idea of guided imagery as he could listen to it while he was falling asleep and he didn’t even need to pay attention! He also was competitive, and I gave him an Apple Watch and he liked to measure his lap mileage around the hospital. It gave him a chance to set little goals for himself. Find something that you and your loved one like to do as a form of release and as a form of self-care.
8. Accept and Ask for Specific Ways to Help
During Rob’s illness, it was so touching to seehow much everyone wanted to help. Friends set up a meal train which was extremely helpful. I found people asking often, what can I do to help? It would actually be more helpful if people would come to us and say, I’m dropping off dinner on Tuesday or I’m going to come pick up your daughter on Saturday and take her to a movie – but that often doesn’t happen and to be fair, most times, people don’t know what we need most. Let people know specific tasks that would help you – like asking for dinner to be dropped off on a certain night, or help with having the kids picked up and taken for pizza one night or maybe you need some staples from the grocery. Whatever it might be, people want to help, and it helps them feel useful instead of helpless. It isn’t always easy to ask for and accept help, but it is a win-win for everyone.
Our Next AML Caregiver Chapter Event
We hope you can join us for our next AML Caregivers event which will take place on March 9th 2-3 PM Eastern. During this event, Dr. Bryant, a dedicated nurse-researcher in the field of AML, will share the major areas of focus in caring for your loved one during and after AML treatment. She will also provide time to reflect on your experiences as a carepartner.
about the author
Katie joined HealthTree 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.