Remission: Year 1

The results are in! No APML detected.

0 Cancer Test Results

I’ve reached my first year of remission. I say this humbly with gratitude and hopefully dodging a jinx. My impressions…

I get superstitious like this. Could it have been the Kobe finally passed joke (RIP King!) that I might have repeated that swung my karma? I wonder if maybe it was the year run on Cumby’s breakfast sausage sandwiches, one month of Dunkin Maple Coffee, or I gulped the water while swimming in the bay. Maybe I got zapped by the nuke plant miles from my house, my monitor, or phone.  Nah! More likely, it was living a stressful life and/or the ten years of smoking I did when it was cooler to do so.  The point is, although no cancer is currently detected (nice oncologist phrasing, eh?), the specter of it is here to stay.

I have been doing my best to live with it mentally.  Humor helps, as does learning what you can control, prayers and meditation. At the end of the day, though, the biggest ground for me is the thought that I’m here right now with you, and I’m ok. That is what matters. Not what did happen or what could happen. I sometimes fail miserably with this line of thought, but I keep trying. Try is something I can control.

I’ve found many connections in the cancer community, although it’s a double-edged sword. Everybody’s experience is different, but we’re all scared shitless. It is possibly the worst common ground you could ever find-but it helps. I’ve found great happiness there. There are so many laughs and good souls. But, I’ve also felt sadness with the pain and passing of others.  Norm MacDonalds’s recent passing took the wind right out of me, as do the people that suddenly disappear off the internet. Sometimes you see something on their passing, but more often, not.  You want them or their loved one to know you get it and cared. Survivor’s guilt is a thing, but so is compassion. It is worth the tradeoff. I’m a better dude because of it.

Physically, I’m much better, although some things may not go away. I have much more energy and some stamina. Fatigue still happens, but not as much as it used to, and you become better at managing life around it. My stomach issues evolved but are now manageable. The added bonus is what I can’t eat wasn’t good for me to begin with. I occasionally cheat, though, and pay the toll. Paying the toll makes it so much more worth it. I still have some neuropathy in my feet, but it helps mitigate the plantar fasciitis so I can exercise more (winning!). Yin and Yang. See the pattern developing in all this?

Oncology visits have evolved. I have become a member of my oncologist’s B-squad of patients. The B means boring, and that is good. My oncologists have become a bit more distant, stuff gets pushed back to my PCP, and there isn’t much urgency anymore. It is hard to let go, but these are good developments. The memories evoked, sights, smells, and sounds I see in the clinic haunt me, but it keeps me grounded in being the boring compassionate patient I want to be.

It’s been over a year. That may not be true next year, but I’m here now. That’s what matters. Hope this helps somebody that is just starting.

Stress and APML

I’ve been thinking about the cause of my cancer a lot lately. APML is a weird one, with no direct link to the obvious risky behaviors I undertook, starting with a decade-long smoking habit through my 20’s and during the same period working a few months in a warehouse and factory job close to all kinds of toxic chemicals.  I also live within a few miles of a nuclear power plant. I ate red M&Ms, washed down pounds of Doritos with gallons of Mountain Dew, and stood way too close to the microwave if edge-case conspiracy is your thing.  My oncologists rightly shrug when asked, as science has yet to prove a cause with only the hematologist weighing in that weight may have played a role. Other APML patients are equally lost, but there seems to be one common thread, stress.

First and foremost, there is no scientific data that links cancer to stress. There are many suggestions that it might be, going as far back to physicians in ancient Greece.  Stress does lead to behaviors that have clear linkages, such as alcohol abuse and smoking. You can find countless studies on pub med and the internet that are mostly inconclusive in their findings. So, as a smart data-driven person, you probably should hedge your bets towards, they don’t know, with a nod toward the fact that time, reputations, and money has been expended looking at it. Do not look to it as the sole cause of cancer, and do what your doctor tells you.

I believe there is a linkage between stress and my cancer. Our fight-or-flight responses are constantly at work, more so during times of stress, do all kinds of things to our bodies to help them adjust, starting with releasing hormones to get the body moving. Generally, blood pressure, heart rate, and blood sugar rise to meet the perceived threat. If it’s chronic stress, there are proven linkages to digestive, heart, urinary, reproductive issues, and most compelling to me, a weakened immune system.  I don’t think it’s a stretch to think this likely extends to our genetics and may cause a change that kicks starts creating cancer cells. This belief has grown as chronic stress seems to be the common thread in adult APML stories, including my own.  It is anecdotal for sure, but it has become more compelling after reading or hearing many APML stories.

Reducing stress is a no-brainer, but the problem is motivation. There is no much in our lives that are not conducive to reducing it. You know this.  Good thing cancer is an excellent motivator. I’d say it’s a good quality, but cancer doesn’t have any. So what I can say is, you don’t want it, and I think most APML people feel it’s ok for you to learn from our experiences and not have to learn from yours.

I have found a few things that have helped me deal with my stress.  First, take stock of it. Take a look at your life and see the incremental things you can do to help. Small things like limiting screen time and going for a walk helps. Maybe lose that FB account. Second, if you had big things in your life happen, get help. Professionals are educated and are emotionally invested in a different way than your friends and family. They can also prescribe meds. Third, meditation has changed my life. It isn’t hocus-pocus. It takes patience and practice but has helped me step back and evaluate my thinking. I have used an app with guided meditations for well over a year, and it has well-surpassed the cost.

I hope this helps.

As per my last cancer posts, this is the usual disclaimer. I’m not a doctor or licensed medical professional. Nobody should construe what I post as medical advice. I’m just an APML patient trying to help others through my experiences.

Cancer Books That Don’t Suck Part 1

Cancer reading is hard. It is not the most uplifting thing, and like other self-help books, it is hard to sort through what is authentic with what is not. Does the author want to help you, or are they starting a cult or looking to make a fortune? The amazon reviews don’t really help sort that. So in the spirit of limiting other’s exposure to douchebaggery, I thought I’d start pitching books I find authentic and helpful to me.

The first book is David Goggins’s Can’t Hurt Me: Master Your Mind and Defy The Odds.  It is not a cancer book but can definitely help patients build their mindsets during the storm. This is most definitely marketed as a tough-guy tome, but there is so much more going on under the hood.

Let’s back up a little for context.  I was terrified, felt fragile, chemo-brained, and mentally tired when I left the hospital. I had eight more months of treatment ahead of me if things went well. The hospital stay had given me a bed-sore that quickly became an infection. This would develop into something requiring a painful surgery that would take a long time to heal due to Leukemia. It would be a long haul, and I had no trust in my health or body. Things were a little grim. A relative who has cancer reached out to help and sent this book.

I started reading it and got hooked as the best thing to distract you from your issues is somebody else’s issues, and good lord did David have them. He also was a Navy Seal. He overcame many issues and a challenging career with a highly developed mind-over-matter mental toughness, but what is most valuable is his thought process in looking at each challenge. It helped me reframe my stuff in a way that was tangible and accessible to me. Things stopped being how I’d like them to be, but how they are.  It helps solve problems, push through them, or in some cases, don’t cause them. This didn’t fix anything and I was by no means entering the next Iron-Man contest or becoming CEO, but it helped me mentally navigate some real humps and bumps. It still helps me today, and I think it could help you too.

The second book is Suleika Joaouad’s Between Two Kingdoms: A Memoir Of A Life Interrupted. I picked up this during remission after hearing her speak on a podcast. She struck me as authentic, and when I dug deeper, I saw that she had been writing about her cancer experiences for some time. A few articles and blog posts in, I definitely wanted to read the book.

The book is skillfully written and covers Suleika’s journey from illness to recovery and its impact on her friends and family. It doesn’t pull any punches, and you will feel some of her pain reading it if your heart isn’t made of rock. It also travels a bit to her life before and after, giving context and a destination. It is honest, authentic, and well regarded.

The book is priceless to me because her experiences and thoughts resonate enough to feel like a sanctuary. I see hope through example because of her ability to communicate it so well.  Her exploration of her own and other’s life-changing events helped me consider my own.  This book will be important to me for many years to come. If you’re out of the storm and a little lost about what is next, read this book. It will help.

Ultimately the events of the last few years have been a terrible lesson in being present-and not just present in my own life but in the lives of the people that I love. Tomorrow may happen or tomorrow may not.

Day One APML (Acute Promyelocytic Leukemia) Diagnosis Tips For Patients

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11.  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.
  12. 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!