Feeling Myeloma

My MMA list friend left yesterday morning for Venice. She will be back in Florence on Thursday. I would have loved to have accompanied her since I haven’t been to Venice in years, but I am teaching this week, oh well. Anyway, she is a truly wonderful person, and I feel as though we have known each other for decades instead of just a few days. Her visit has turned out to be a complete joy and has also been an eye-opener in many ways. I should mention that she is a professional therapist, and a very good one at that!, and perhaps that is why I find myself telling her things that even my closest friends don’t know. How does THAT happen??? Oh, and the funny thing is, she frequently doesn’t even have to ask me any questions. Words just start pouring out of my mouth. That’s never happened to me.

Today I want to write about one of those eye-opening discussions: feelings. Feelings, she said, are so rarely discussed on the myeloma listservs. I had never really considered that aspect of the myeloma puzzle. But she’s right: listserv members discuss treatments and symptoms and pain and so on, so why do we not discuss feelings on more than an occasional basis? The simple answer is, because it’s hard.

After giving the matter some thought, I have come to recognize that, when I do research, it is as though I am doing this for SOMEONE ELSE, not for me. I am not the myeloma patient when I don my researcher outfit. I become detached. Does this make any sense?

Perhaps my friend is right. Perhaps I keep my mind busy doing research so that I won’t have to deal with any feelings about myeloma. Even my blog, now that I think about it, may just be another way to avoid feeling. In my daily life I rarely think about myeloma, even when I take my curcumin twice a day. Sure, I visualize the malignant cells, but I probably don’t make the connection: those cells are PART OF ME. In fact, when I visualize them, they are outside my body. They have always been big slow hairy (no idea why I think of them as hairy!) stupid monsters that I slash and kill with my sword. Outside my body

This is a tough subject, and I am certainly not equipped to go into much, if any, depth, but it is also an interesting and perhaps very important one. My friend has given me lots of food for thought. At one point, she asked me if I had ever felt angry or if I ever feel angry, obviously in connection with myeloma. Angry? No, I answered immediately. How about sad, she asked? No, not at all. And fear? Well, yes, sometimes I do get scared, I admitted. Well, so what do you FEEL?, she insisted. I answered: I feel determined. But determination isn’t a feeling, she pointed out. It isn’t? Darn it, she is right. Merriam Webster defines determination as the firm or fixed intention to achieve a desired end. There is no emotion attached to determination (or is there?). So am I not allowing myself to have emotions about myeloma? But I DO have emotions, my brain protests. No, no I don’t, let’s be honest, not where myeloma is concerned. I have very few emotions surrounding myeloma. Of course, I strongly feel for and empathize with other suffering myeloma patients, but if I try to feel something for myself, I feel nothing. No fear, no anger, no sadness, no depression.

Final question for the day: are my cheerful attitude and quirky sense of humor simply a mask (in the sense of a Pirandellian mask)? I don’t think so, since I have been this way all my life, but I don’t know for certain. I have no definite answers, except that perhaps denial, if that is what it is, gives us a way of coping and trying to function on a daily basis. Perhaps it is not necessarily a bad thing…

Well, that’s it for now. Yesterday I discovered something new, so I have some research to do. 😉


  1. Hello again,

    I just thought I should share a few thoughts with you. I don’t know if you’ve checked out Avemar yet, but it could well be worthwhile, the claim is that half of the cancer patients in Hungary use it!

    I also sent you that note on sulforaphane. Let me explain more about that. We subscribe to the gruoppe kurosawa blog and steve there has long advocated trying to deplete the glutathione of the mitochondria of malignant cells in order to (re)sensitize them to apoptotic signaling. I finally came around to his way of thinking when I read Aggarwal on that being one of the potentiators of curcumin efficacy. So I started looking for more agents that did it. Sulforaphane does, but Steve now says that its too hard to get enough of it, and sure enough, the only supplement I found with very much in it, Xymogen – Oncoplex, is very expensive. I did more researching to look again at the agents he suggested for this. I did confirm that glutamine DOES do it, though many seem confused about that. Steve suggests 30 grams a day. My wife has now got as far as 20. Sodium selenite is another one, he suggests 1200mcg per day. My wife is now using 1000. Finally Steve is lately enamoured of acetaminophen, as a COX2 inhibitor, a depletor of glutathione, and more. Certainly it does both, and its potential liver toxicity is based on GSH depletion. Steve recommends 4000mg a day which it at the maximum safe level (given no alcohol use). My wife will not start using any of it until she’s finished her Taxol, because we don’t want to stress her liver meanwhile.

    I don’t know your general protocol, but I just thought that you might find the idea that some agents are most useful in helping other agents work. Steve really does have a lot of good ideas, i must admit.

    bye for now from Ireland,

  2. About feeliings… and I keep thinking about the things you said about yourself.. And I think, don’t let anybody make you so judgmental about yourself.
    You don’t strike me as an unfeeling person… or even one out-of-touch with your feelings. There is no “correct” way to verbally express your feellings.
    When you do your research you are scientific and factual.. seems like an appropriate approach.
    So I’m prejudicial on the subject of YOU… I’m grateful for you; I cheer you; I celebrate you.

  3. I’m not sure why we don’t talk about feelings. I know that mine a scary sometimes. I’m afraid I’ll scare others if I talked/wrote about what I was really feeling at times. For example, I would love to go back to school. It sounds like a good idea until I start to wonder if I’ll be here a few years from now. Would I be better off spending the time and money doing purely fun things? If I did get a degree in another field, would anyone hire me (because of my cancer)? It can snowball at times. I think I will go ahead and “talk” about some of these things from now on. Thanks for bringing it up.

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