As Phil shared earlier, I found out on 13 September 2011 that my life-partner/fiance Michael (we have lived together for 25 years now) has what appears to be Stage 1 multiple myeloma, a form of bone marrow cancer that impacts the cells responsible for for creating antibodies. I say “appears to be” because there is something called smoldering myeloma or MGUS that is the precursor to full-blown multiple myeloma; he could still possibly be in this shadow zone where the disease slowly progresses but does not yet require treatment. When Michael and I looked up the disease on the Internet, we discovered that his numbers were potentially still in this shadow stage as much as they were in the Stage 1 category. Whether it is smoldering or Stage 1, though, it is really a numbers game from this point on.
Michael’s hematologist did what I refer to as the “partial disclosure.” He did not discuss staging or life expectancy or cure rates–he did not even mention the word “cancer.” He did not offer to give us copies of the blood test results. He simply smiled, spoke calmly and gave us enough information so that we would be forced to look this up later after the visit, which of course we did. He answered specific questions if we asked them but neither of us knew enough about this particular disease to ask the appropriate questions. I find this to be a common scenario, especially during the first “here is your diagnosis” visit. Not only is there the shock value to contend with but those of us on the receiving end are also at the wrong end of the learning curve. We have no way yet to put the information we are receiving–or later gathering–into context. It is extremely easy to misunderstand and to make false assumptions.
So, for those of you who may be in the same position that Michael and I are in right now, I make this one suggestion: gather as much information as you feel comfortable doing–or have a trusted friend do so for you–but simply hold on to the information for now without making assumptions or interpreting it for yourself. It’s good to gather information so that you can ask more targeted questions and so that you will better understand the answers but it can be detrimental to read the data in lieu of asking medical professionals the appropriate questions. All of this takes time. Give yourself the time to absorb and to accept.
In Michael’s particular case, his bone marrow is overproducing plasma cells that produce a certain antibody: he is overproducing IgG, one of the major antibodies that I no longer make. (How ironic is that?!? Michael and I have always joked that we frequently are at the extreme ends of the continuum from one another–if there was ever an example of it, it is this.) So even though Michael and I were familiar with the terminology that his doctor was using, it still was not enough to help us understand the bigger picture of Michael’s disease.
What I know to be true–today, two days after learning that the love of my life has an incurable progressive disease–is that his diagnosis is only one part of a multidimensional, rich life that completely transcends any particular specific circumstance. I can choose to grieve over future projections of loss or I can be at peace with what I can be at peace with today. Michael’s diagnosis is just one thing–and things constantly change. It is one bad thing among many other things. I may not be able to change the circumstances but I can control and transmute my reactions to them. Otherwise, how can I be available to Michael completely? How can I be with him completely? How can I be open to God’s presence–which ultimately is the source of all comfort and security? My grief and my sorrow simply get in the way. All I can do is to feel what I feel as it comes up, recognize it, and then allow it to soften and to go.
At the beginning of this particular journey, this is the best that I can do. And if you are in the same place, it might be the best that you can do, too. Trust me–it’s enough.