I just finished re-reading my column from last month on the topic of denial about death and dying ^[1].  The column generated so much discussion, I wanted to write a follow-up.

Let me start by clarifying my take on denial:

We all need to grieve or emotionally deal with our diagnosis in whatever way works best for each of us; I would never be so presumptuous as to tell someone how they should do that.

Denial can be a magnificent coping tool.  If trying to come to grips with your diagnosis is overwhelming and denial works best for you, do what you need to do in order to get through the day.

Several people felt that my column was a downer because they are newly diagnosed, hold out hope for a cure, or are successfully living their lives without thinking about death or dying.  That’s fine.  There’s no need to discuss death and dying immediately; there’s nothing wrong with taking things one step at a time.

That is, as long as it doesn’t inhibit you from learning about multiple myeloma and your treatment options.  Becoming a well-educated patient should be the cornerstone of our new normal lives.

With so many therapy options, being well-prepared to make important and informed decisions about our medical care is not only a good idea, it may actually help you live a longer and better life.

For instance, keeping current with myeloma-related news can help you learn how to mitigate the inconvenient and painful side effects of ongoing myeloma therapy.

Some of you have been fortunate to not have to deal with the serious damage that can be associated with myeloma and myeloma therapies — yet!  But almost all of us eventually will.

Even if you haven’t been forced to undergo dialysis, live with painful bone damage, peripheral neuropathy, or the emotional anxiety of dealing with an unexpected relapse yet, you will most likely experience one or all of these sometime in the future.  Over 95 percent of multiple myeloma survivors relapse — and that’s a generous number.  Preparing for the inevitable should help make dealing with whatever comes your way in the future easier.

You don’t need to live and breathe multiple myeloma 24/7.  You don’t need to let it get you down or stop you from living, but it is important to be at least one step ahead of myeloma.

There is one more downside to isolating yourself from our unfortunate multiple myeloma world:

Without diving in, you may miss out on meeting some amazing people.  Sharing experiences online, over the phone, and in person may help you cope.  It did for me! By connecting with lots of fellow myeloma survivors, I have heard from and met some of the most amazing people I’ve ever known. And I’m convinced I’m a better, stronger person for it.

For that, I want to thank all of you.

Feel good and keep smiling!