I was recently diagnosed with Chronic Myeloid Leukemia (CML). There are good and bad parts of CML.

Good

  • Treatable with a daily pill called a TKI. It’s not quite chemotherapy, but it’s pretty powerful stuff. TKI’s were discovered in 2001. Before TKI’s the prognosis was not very good for CML.
  • I can still do some of my favorite things. (Playing golf, going to the beach, being active outside, being able to spend time with those I love)
  • I don’t have to be in the hospital for treatment.

Bad

  • Medication side effects are debilitating at times. Fatigue like you’ve never felt, aching everywhere, shooting pains in legs, numb fingertips etc.
  • I can’t do as much as I used to do. Career has been put on hold. Social life has taken a hit. At times I feel like a 75 year old living in a 24 year old’s body.
  • CML is a chronic disease meaning very few people fully get rid of it. This could very well be something I deal with for the rest of my life.

CML altered my world. The past five months have been the hardest time in my life by far. Each day, one foot at a time, I’m rebuilding my life. Each day I’m getting better at living with cancer. Despite the circumstances I still feel blessed to be where I am today. I feel lucky because it could be so much worse. But I also feel so incredibly bummed out sometimes. I’ve been FEELING a lot for the last few months. Talking about our feelings is a touchy, almost taboo subject. It’s extremely difficult to speak up about how we’re feeling.

I’ve had almost weekly doctor appointments since March. I’ve never met with an investment advisor before, I’ve always been on the other side of the table. But, I’m assuming it is kind of like going to a doctor’s appointment. So I’d like to shed some light on that relationship dynamic.

Something we all do is to try to seem better than we are. We want the doctor to tell us we’re in good health. We want the advisor to perceive us as smart, with-it and in a good spot. We want our friends and family to think we’re doing well. Part of how we do this is by putting up fronts, pretending like everything’s fine, not asking the hard questions and not speaking up if we don’t understand something. I’ve learned over the last 5 months that this can lead to a lot of unnecessary discomfort.

Working with a doctor or investment advisor is scary, stressful and nerve-wracking. They are probably number 1 (health) and number 2 (financial) when it comes to priorities for most people. In both situations, big words are thrown around and difficult concepts are discussed. There is great opportunity for misunderstanding.

The phrase “you’ll be alright” is a favorite among investment advisors and doctors. I know for a fact that I’ve said it countless times as an advisor. And now I’ve had it said to me numerous times from doctors, nurses, family and friends. It’s said as a way to provide comfort during hard times and often does just that. The problem is, the definition of what it means to be alright is different for everyone. And what it means to be alright will constantly change over a single person’s life. It’s hard to know when your definition has changed.

When I was first diagnosed back in March I met my now primary oncologist for the first time. He’s a wonderful doctor who has helped me immensely. He had no idea who I was before my case just got thrown on his lap. I’m sure it’s not easy to tell a stranger “you have leukemia”. But by the time he left my hospital room he had me somewhat calm about the whole situation. My mind was spinning and emotions were flowing. But I had understood enough of what he said to believe that I wasn’t going to die anytime soon and that I would be alright.

The investment advisor in me compares this to telling a client their account is down or the market is taking a turn for the worse. The client wants to feel secure and wants to know that it won’t be this bad forever. They’re likely highly emotional and scared. In this situation it’s the advisor’s job to disarm the client and provide the feeling of security. It’s the advisor’s job to make the client feel like everything will be alright.

In the heat of the moment the assurance you get from the doctor or advisor is usually enough to tide you over for a while. But then comes learning how to live in the day-to-day. You can’t call your doctor or advisor everyday asking questions. You need to learn how to cope on your own. So much of learning how to deal with difficult emotions comes from setting expectations.

Setting appropriate expectations is extremely difficult for CML. It’s a rare blood disorder that affects everyone differently. Despite my blood counts normalizing, I was constantly worried that my side effects weren’t normal and that the condition was getting worse. I now needed help with learning what to expect while living with cancer. My definition of “feeling alright” had changed from when I was in the hospital. I needed something else from my doctor. I knew that in the long run my life expectancy was still good but it was hard to see that while dealing with the side effects of my medication.  My primary oncologist didn’t know how else to explain things to me. But he knew that I needed more help. And he knew enough to know that he didn’t have all the answers, so he sent me to The Cancer Institute of New Jersey. There I met with an amazing CML specialist who provided me and my family with great clarity and a much needed expectation adjustment. I also met with a social worker who opened my eyes to some resources for young adults battling cancer. Just knowing that other people like me were struggling with the same things made me feel a whole lot better.

This is comparable to knowing that you’re still on track to meet your financial goals but getting worried about the daily noise the market generates. Advisors need to be able to adapt to a client’s needs. We don’t have to have all the answers, but we do have to be able to help our clients find them. Advisors need to be somewhere in between stock market technician and social worker. Or maybe advisory firms just need to hire social workers that can help people deal with the emotions of investing.

Telling people “you’ll be alright” simply isn’t enough. You have to make them believe it. What patients and clients ask of their doctor or advisor will change over time. The relationship is fluid. It’s important for the doctor/advisor to realize this and be able to change with the client. Sometimes the client/patient will want a 30,000 foot view of the situation just to reassure them they’ll be alright. Sometimes the client/patient will want to break down the minutiae.

My recommendation to advisors is to do everything you can to know what the client is looking for. Ask the client if they understand, ask them if they are satisfied.

My advice to those in the client/patient role is to know what your definition of “being alright” is. Know what to expect. Ask the hard question, ask for something to be explained again. Let the doctor or advisor know when you are unsatisfied with their answers.

I’ve learned that being alright and being pain-free are not the same thing. There’s an unrealized distinction between knowing that everything will be alright in the end and feeling alright in the day-to-day. Everyone suffers in some way, it’s what we do. Learning how to cope is a process. There are many people and resources out there that can help. The only way that those people will be able to help is if you admit that you need help. “Getting help” with anything is not weakness, it’s strength.

The first couple of weeks after I got diagnosed I really just wanted things to go back to normal. I went back to work less than 10 days after getting discharged from the hospital. I told my friends that it really wasn’t that bad. I did this not because my friends or family wanted me to but because I wanted it to be true. If I could just get some semblance of routine back in my life then I’d start to feel better. But I couldn’t live the life I lived before, my body just wouldn’t let me. This led to me beating myself up for not being able to do all the things I used to do. And downward the spiral went. I’d lay paralyzed in bed for days because I couldn’t face dealing with the pain of living with cancer. After about 2 or 3 months of going through this it finally dawned on me, “Stop pretending that you don’t have cancer”. I finally accepted it. And what a liberating feeling it was.

This is the very nature of life. No one in this world experiences only pleasure and no pain, and no one experiences only gain and no loss. When we open to this truth, we discover that there is no need to hold on or to push away. Rather than trying to control what can never be controlled, we can find a sense of security in being able to meet what is actually happening. This is allowing for the mystery of things, not judging but rather cultivating a balance of mind that can receive what is happening, whatever it is. This acceptance is the source of our safety and confidence. When we feel unhappiness or pain, it is not a sign that things have gone terribly wrong or that we have done something wrong by not being able to control the circumstances. Pain and pleasure are constantly coming and going, and yet we can be happy. When we allow for the mystery, sometimes we discover that right in the heart of a very difficult time, right in the midst of a painful situation, there is freedom. In those moments when we realize how much we cannot control, we can learn to let go. As we begin to understand this, we move from a mode of struggling to control what comes into our lives into a mode of simply wishing to truly connect with what is. This is a radical shift in worldview.”

This passage from “Lovingkindness” by Sharon Salzberg embodies why true acceptance is so powerful.

Now, when I talk about my CML with people I let them know how I really feel. I let them know I’m taking some time off from work. I let them know I can’t really exercise anymore. I tell them I’m too tired or too sore to go out at night. Admitting this has actually led to me feeling better. Discussing my weaknesses has led to stronger bonds with those I love and created a much easier environment for me to live in. We don’t have to pretend to be okay. We don’t have to suppress our suffering. We don’t have to hide our weakness. We can be still be “alright” when we aren’t at our best.

Living with cancer is truly terrible. I don’t wish it on anyone. But it has also allowed me to transform as a person. It has taught me that happiness shouldn’t depend on how you’re feeling. Happiness is not contingent, it is always there. It has allowed me to learn about things that aren’t easy. I’ll continue to battle this disease with everything I’ve got. And I look forward to sharing more of my journey with you all as it unfolds.

 

 

Now Go Talk About It!