It was such an awful shock to be diag­nosed with mul­ti­ple myeloma, and to be suffer­ing from ver­te­bral fractures and a high count of myeloma cells in my bone mar­row 11 years ago this July, that it drove all other con­cerns out of my mind and that of my dear hus­band and care­giver, Dilip.

For quite a long time after my diag­nosis, we were so taken up with the treat­ments and learning about the dis­ease, the stem cell trans­plant, and more that the rest of the world seemed distant to us. We stayed in a bubble of con­cerns of our own making.

Finally, after many months, I was well enough to be around family and friends again. People were very solicitous and con­cerned about me and my health. I, on the other hand, con­tinued to not worry about any­thing but myself.

Eventually, my fractures mostly healed, presumably with the help of the Aredia (pamidronate) I re­ceived, and the myeloma ther­a­pies I was treated with put the dis­ease down to a very low level. I wasn’t cured, but quite well again, both psychologically and med­i­cally. I have not gotten any addi­tional bone fractures since then, and my blood counts have been close to nor­mal for a long time.

Despite all these de­vel­op­ments, mul­ti­ple myeloma was still my main preoccupation. Even though I was doing much better, I wanted to be in­volved, learn more about the dis­ease, and stay aware of new de­vel­op­ments. I there­fore decided to volunteer in the myeloma com­munity, locally, nationally, and virtually.

I have to admit I still worry about the dis­ease, and my worry keeps me motivated to take the treat­ments I am on now.

Friends and acquaintances have been inquiring kindly about my health throughout my myeloma journey. I realized after a while, though, that they also may have had prob­lems in their lives; it wasn’t all about me. I just didn’t hear about their prob­lems.

I recog­nized that they may have avoided telling me about their prob­lems because they may have thought that my prob­lems with mul­ti­ple myeloma outweighed theirs. For example, if someone breaks an arm falling off their bike, they may not even mention it, because they may think that they should not bother me with such a ‘minor’ incident.

However, it is nice to keep in touch with friends, and be in­cluded in the news, good and bad, of their lives. Otherwise, one can be­come rather isolated in the personal worries one has about myeloma.

So I started making a point of turning the conversation around so that my friends could also express themselves.

In that regard, the COVID-19 crisis has brought an in­ter­est­ing twist.

Because my im­mune sys­tem is compromised and I there­fore am at a higher risk of getting COVID-19, I have been staying home a lot. I found out through conversations that many of my friends are doing the same thing, even though they are not im­mune compromised. So, in a way, we are all of a sudden on an even playing field. I ask about their gardens, their families, and what they are doing, and try to stay in touch with them that way.

In addi­tion, many people are turning to videoconferencing and online chat groups for their hobbies and to distract themselves from outside events. In some situations, such as an interest group, talking about one’s illnesses is actually discouraged, since the focus is on a spe­cif­ic subject mat­ter. So in those groups mostly it is not mentioned that one is being treated for cancer. I think that is healthy since we don’t want to dwell on illness.

Sometimes I get through ex­plaining about the treat­ments and the list of drugs I am taking, and I can see people sort of cringe and per­haps think of me as dif­fer­en­t from an average person. That may be true, but I am used to my situation, and for the most part feel quite well, so I don’t perceive myself as dif­fer­en­t.

So I do try not to worry others around me about my treat­ments. I basically avoid long conversations with others about mul­ti­ple myeloma and just tell people that I am doing fine as far as the myeloma treat­ments are con­cerned, and that I am dealing with the side effects of the drugs.

I also realize that it is better for me not to obsess about mul­ti­ple myeloma. If I am relaxed and can focus on other tasks and responsibilities in my life, life is easier for me. I do take my med­i­ca­tions and go for appoint­ments, tests, and treat­ments as prescribed. That is usually enough to reassure me that I am doing what I can to stay healthy.

Going for­ward, I hope that I am a little less self-centered about my own health con­cerns when com­mu­ni­cating with others. I will have oppor­tu­ni­ties to prac­tice that now that we are allowed to visit with others again. I am really enjoying seeing my chil­dren and their families again, as long as we are healthy. My hus­band and I found that the grand­chil­dren missed us, and we missed them. So I cer­tainly want to listen to them and find out what they are thinking. And one thing I know for sure: My myeloma won’t be com­ing up in those conversations.

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The quotation for this month is from "Winnie the Pooh," a chil­dren's book by English author A. A. Milne (1882 – 1956): "You can't stay in your corner of the Forest waiting for others to come to you. You have to go to them some­times."