I have made it five years since my initial diag­nosis, or at least I am hoping to make it to five years, because you should be reading this column right around my five-year mark (January 15, 2015). 

Wow. I have lived with multiple myeloma for five years, or almost 8 per­cent of my time spent here on Earth. Looking at it from the perspective of 8 per­cent of my life with multiple myeloma feels so dif­fer­en­t than looking at it from a 5-year perspective. Strange, no?

When I was first diag­nosed, trying to know …

Though it has been almost five years since my initial diag­nosis, I still am somewhat un­cer­tain about what it means to live with multiple myeloma. Where does enjoying your life, LIVING your life (having fun, laughing, enjoyment, etc.) fit in with the very real and serious cir­cum­stance of multiple myeloma?

When first diag­nosed, I was sad, disappointed, un­cer­tain, and scared. It was easy to be this way be­cause I asso­ci­ated having multiple myeloma with con­stant and extreme pain, lots of suffer­ing, so much sadness, and of course my coming death. I had an …

For many myeloma patients out there, the chal­lenges of weekly treat­ment in­fusions can create an onerous burden for both the patient and their care­giver. What an understatement!

It’s been tough lately. It’s hard to ex­plain to people that you can put up with almost any treat­ment for a short time, but that be­comes sig­nif­i­cantly more chal­leng­ing when you don’t see an end in sight.

With mixed feelings I hear patients “ringing the bell” to signify the end of their treat­ments at our cancer center. While I’m happy for them, we’ve never …

So, here is my reality: I do not like eating beets. And I do not like having multiple myeloma. 

However, there is a huuuuuge dif­fer­ence be­tween the two “do not likes.”

With the beet issue, I can choose to not buy beets at the grocery store. Problem solved. Beets can be avoided.

Not so with multiple myeloma. I cannot choose, or at least I did not have a choice in getting, multiple myeloma.

No beets is easy. No multiple myeloma? Not so easy. See the dif­fer­ence?

When I was first diag­nosed with multiple myeloma …

As you may remember from my pre­vi­ous column, I started treat­ment with Darzalex, Revlimid, and dexa­meth­a­sone in early Octo­ber.

By now, I have re­ceived six weekly Darzalex (dara­tu­mu­mab) in­fusions, and quite a bit has hap­pened as I adjust to being on a new regi­men.

After the first in­fusion, I had a mild cough that turned into quite a deep, hacking cough. I could hardly sleep for a week. It didn’t appear to be a "productive" cough, so I took Benadryl (di­phen­hy­dra­mine) and cough med­i­cines and sat upright a lot at …

I find the Myeloma Beacon patient columns and forum very in­for­ma­tive and use­ful, but they are surprisingly short on what comes with relapse when there are no more realistic treat­ment options. I’m facing that situation now and thought I’d chronicle my journey along this next part of the road in a regular column, in hopes that it will be of use to others.

I am 81 years old, diag­nosed in June 2017, at age 79, when I sneezed and broke two ribs. I went on a reduced-dose …

Life is risky!

I know that is true and I also know that being diag­nosed with multiple myeloma has altered my concept of risk.

Right from the start of my life with multiple myeloma, I became aware of taking new risks.

There was the risks asso­ci­ated with having a stem cell trans­plant. The doctors and nurses highlighted them to me. It seemed a risk worth taking, but it did make me think much more deeply about the de­ci­sions we make and the way we have to deal with the con­se­quences.

Then there …