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Pat's Place: Waiting And Watching Isn't A Death Sentence—It's An Opportunity!

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Published: Sep 16, 2010 1:09 pm

Multiple myeloma patients experience a wide range of emotions: panic, fear, apprehension, anger, and frustration, to name a few. Undergoing medical testing and cancer therapies can be uncomfortable or downright painful.

But often, the hardest part is all of the waiting. Spending long hours in the waiting room. Spending days or weeks afterwards anxiously waiting for test results. Then waiting to meet with your doctor to decide what to do.

And there is another type of waiting all well-informed multiple myeloma patients are forced to endure—a lifetime of waiting and worrying about when your multiple myeloma will begin to become active again.

Let's add up all of this waiting time. Start with the initial days and weeks, waiting for a diagnosis and deciding on an anti-myeloma therapy. Then add time spent in the waiting room, at the pharmacy, and sitting by the phone waiting for news—any news about your condition.

Now figure in the weeks, months, and years a multiple myeloma patient spends waiting and wondering how long their current therapy will work—plus more time for ongoing tests, procedures, and complications.

What then? More waiting, of course!

Patients with monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma understand this type of waiting all too well. They get lots of practice anticipating the possible move from their pre-myeloma condition to a more aggressive form of cancer.

Myeloma nurses and docs describe this long term monitoring phase as “watching and waiting.” However, I prefer to call it “waiting and watching” because so much more time is spent waiting.

A vast majority of MGUS and smoldering myeloma patients don't undergo any anti-myeloma therapy. They simply “wait and watch” for any significant changes in their condition.

Thanks to an ever widening array of novel therapy agents, most patients with active multiple myeloma are fortunate enough to experience the same thing a number of times during their treatment.

Fortunate enough? Waiting and watching until you drive yourself crazy? Yes! Because waiting and watching doesn't need to be a prison sentence—it can be an opportunity!

Waiting and watching should be good news! It should be welcomed and embraced. After all, it sure beats the alternative of a more invasive therapy, hospital visits, side effects, complications—or worse.

It's tragic, actually. Not that someone is diagnosed with multiple myeloma. No, the tragedy is how much time we all waste waiting and watching and worrying!

Here are some tips on how to try and turn the stress and inconvenience of waiting rooms into a positive situation:

  • Try and bring something productive to do with you when you go to an appointment.
  • Most health care facilities now offer free Wi-Fi, enabling you to hook-up to the Internet. Use this time to reconnect with others by email. Research your medications. Read the newspaper—any newspaper from anywhere in the world. Start a blog or CaringBridge site to keep friends and family updated on your medical condition and how you are feeling.
  • Get nagging, organizational tasks done. Pay bills, balance your checkbook, or work on your taxes.
  • Spend some of this time thinking about what to do after your appointment, during an upcoming weekend, or on your next vacation. Or think even bigger about what is really important in your life.

This strategy has the added bonus of helping to keep your mind off an upcoming procedure you are apprehensive about, or better yet, things in the future that you can't control. Heck, your overall health may improve as your blood pressure and stress level drop.

For those who are lucky enough to be in a “wait and watch” period either before the start of treatment or because they are in remission, check out my previous column about creating a life plan for ideas about things you can do to make the most of your time before the wait and watch period comes to an end.

The future looks brighter for many multiple myeloma patients everyday. Try and embrace the positive. The negative will take care of itself—and there isn't anything you can do about it anyway!

So feel good, keep smiling, and remember: Don't wait and watch—LIVE!

Pat

If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .

Photo of Pat Killingsworth, weekly columnist at The Myeloma Beacon.
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3 Comments »

  • FrankH said:

    Hi Pat

    I know what you mean. It's awfully easy to slip into the "waiting" mode - waiting for results, waiting in waiting rooms, etc.

    Myeloma makes it harder to manage your time, but it's important for us to realize that this "waiting" time is actually our time to LIVE!

    I try to time my appointments to accomplish as much as possible within the shortest possible time. Then, rather than wait for the next appointment, or whatever the myeloma decides to do next, I try hard to put it out of my mind and get on with enjoying being alive, much as I would be doing if I didn't have myeloma.

    As living beings, death stalks us all. Myeloma just brings it into sharper and nearer focus.

  • Pat Killingsworth (author) said:

    So true! Thanks, Frank! Pat

  • Susanne Quadflieg said:

    Dear Pat,

    waiting is only a good option, when there's no better reason for doing something.

    Best

    Susie form Sveden