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Pat’s Place: Multiple Myeloma Survivors Need To Take Regular “Myeloma Breaks”

By: Pat Killingsworth; Published: February 2, 2012 @ 2:02 pm | Comments Disabled

Over the past month, I have once again experienced a wide variety of multiple myeloma-related events that I have heard about over the years.

One thing is for sure:  I don’t recover from sicknesses nearly as well as I used to before my autologous stem cell transplant in July.

Three weeks ago I experienced the worst cold I have had in a decade.  I was able to fight it off in a week or so, but then I was hospitalized this weekend with neutropenia (low white blood cell counts) and a fever of 102.4 degrees.

I’m home and feeling much better now.  But apparently a lower gastrointestinal bug and my last Velcade [1] (bortezomib) infusion didn’t mix.

My old immune system was so tough.  Ten years as a teacher and coach and a healthy lifestyle meant I literally never got sick.

Of course, these are all just minor inconveniences, which would be much easier to take if my transplant had worked…

Which brings me to the point of this month’s column.

I’m learning that living with multiple myeloma is a lot tougher mentally than physically.

I can put up with nurses who can’t start IVs, weekend hospital stays, and bad colds.  But it’s the mental aspect of all of this that is even more demanding.

Keeping one’s head on straight should be something that we all work on daily.

Whether you chose yoga, long walks along a river, playing bridge with friends, or a hobby like photography, we all need to step back, take a deep breath, and immerse ourselves in something other than our cancer.

As readers constantly try to remind me, we all need to take a “myeloma break” regularly or this thing will eat us up and bring us down.

And I was down a bit this weekend.  After a bit of self-reflection, it didn’t take me long to realize that my failed transplant and my myeloma’s growing resistance to Revlimid [2] (lenalidomide) has left me feeling vulnerable.

Talking about it helps.  But I’m not really comfortable discussing this with my wife and caregiver, Pattie.  It may be a mistake to try and protect her, but she doesn’t need to deal with all of this.  God, I worry so much about her and what she will do after I’m gone.

I’m guessing many of you also keep things from your caregivers on occasion.  Another shared experience that I will likely write about soon.

Thanks for listening!  I feel so much better!

Until next month, feel good and keep smiling!  Pat

Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.

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


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URL to article: https://myelomabeacon.org/headline/2012/02/02/pats-place-multiple-myeloma-survivors-need-to-take-regular-myeloma-breaks/

URLs in this post:

[1] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

[2] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

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