My first thought about writing about my APML (Acute Promyelocytic Leukemia) diagnosis is how difficult it is for people to deal with it when diagnosed. APML is a rare but more treatable form of AML. Here is a list of the minute-one things you should know as a patient after your done spinning from receiving your diagnosis. Spinning is normal, just in case nobody told you that either!
Note-I’m not a doctor, psychologist, or expert but I’ve been a patient. None of this should be construde as medical advice and I’m not legally accountable for what you do with it. The goal is to offer suggestions based on my experience as an APML patient. If you are a patient and think there is something valuable that will help others please do contact me and I’ll add it to the list.
- You’re alive and in a place that will help. That is everything. The first couple of weeks will be rough as the doctors and nurses sort out what you need and deal with the likely crisis that brought you to them. They know what they’re doing and will do their best to get you what you need. You can help them by giving them clear and accurate information on your health, doing what they say, and keeping yourself focused on the fact that you are still alive. You are here, and that’s what matters.
- The initial whirlwind is what you need to survive, and then your % of survival goes up tremendously. I often thought of Rocky going through a 100 round fight round-by-round. You will bruise, bleed, rage and cry but do not give up. You will learn how strong you are as you move along. Mentally you will adapt and accept things you were horrified with during initial treatment. Needles become nothing, and you’ll start identifying songs the MRIs play. Talk to somebody if you start getting sick of the pain of treatment or panic.
- The effects of medications are tough to learn. This is particularly true of any steroids you’re prescribed. You will feel weird, different and it is hard to sort out what medication is doing to you versus a condition. Communicate with your doctors and nurses about this so they can let you know what they know and treat any wacky side-effects. Sometimes just knowing that a med impacts your anxiety, bowels, whatever is helpful. Fatigue and chemo-brain are real things. It’s ok to experience them, and you will work through it.
- Nurses provide care and know the important stuff about what it is like to be a patient until you talk to another patient. They’re not all perfect, but they all have wings, so don’t bust their chops. You will find at least one who will give you hope and the truth. I will remember my angels until I can’t.
- Your loved ones will help. Let them. This disease mucks with them too. It is number two on the list of why I hate cancer, and it will be high on your list too. If they’re having a hard time, the social worker can help, and talking to a counselor is a good thing. They need to rest and take care of themselves too. If possible, find a backup for them when they need to come off the front lines for a few.
- The dream of medical record interconnectivity never happened and never will. Make sure you are as forthcoming about your medical history and current medications and conditions as you can be. Don’t depend on a hospital system to be updated or connected with any other. Don’t even trust that their internal systems are connected. Make a list of your medications, keep it on your phone or even tack it to the board in your room. Give a copy to your advocate.
- You will need an advocate until you can advocate. Your significant other will likely be the choice, but if you must choose another, find a level-headed somebody who will go to bat and be the bad guy when necessary. Most hospitals and oncology clinics also have a social worker on staff, nurse navigators, and even a practitioner who can do a lot. They can do much to improve your quality of life as an inpatient and help your advocate do things like short-term disability paperwork and navigate billing.
- Write everything down in a notebook. There is no way you or your advocate will remember everything said or done given the circumstances. Write it down and retain it. Save any piece of paper and business cards you are given. Writing your goal blood values is a great start, so you have a good understanding of where you stand.
- Use any mobile application your hospital offers. They generally give you access to your blood tests and test reports quicker. They also track your appointments, medications, and all kinds of useful things.
- You will find other angels in the hospital, from inpatient to outpatient. Value them and treat them well. Housekeeping, cafeteria, parking, and even the transport folks can be particularly helpful when you are nice to them.
- Social media and google are useful but use for informational purposes only. If you want facts, search for medical papers or websites of well-known cancer clinics or national cancer organizations. Everybody’s tale is different and valid. Do not assume your path will be the same, and always understand they’re dealing with the same bastard you are. Sometimes they’re expressing truth but sometimes fear. APML is rare, so online resources are scarce. APML is also a political party in Pakistan. It’s a fascinating rabbit-hole to drop into for a few but not helpful in learning about your cancer.
- Your hospital stay will be for at least a month. I suggest a foam mattress cover and your own blanket (teddy bear skin suggested). Wear really soft sweatpants and shirts to avoid pressure wounds from lying down in bed. I got an infection due to a hospital stay pressure sore, and having an I&D while you have Leukemia is a pain-in-the-ass (literally for me). Wear boxers if you’re not a boxer person to air things out. If your shower use is restricted and you’re hairy as a bear, you might consider a buzzcut and shaving the arms and chest to avoid medical-tape and bandage waxing. Think 40-Year Old Virgin waxing scene daily for months. If your skin tears, you can ask for gentler alternatives; they do exist. Your room will likely be desert-dry, so you will need something better than chapstick for your lips and drink as much water as you can. Think about doing stuff that will make you happy at the moment, from shows, podcasts, movies to books. Hospital TV and food are ok for a week or so, but you’ll soon be missing Flavortown unless it’s the only channel they have. This is more true if you are on neutropenic precautions. I found mixing and matching entrees and sides helps. Be creative with your time and what you eat. Believe me. You’ve now got the time to work on it!