We learned a lot from our journey through multiple myeloma. We knew absolutely nothing about multiple myeloma as of April 30, 2009. Now, not quite a year later, we know an awful lot about this awful cancer. We got thrown head-first into the world of multiple myeloma on May 1, 2009, and now we know a lot of things we never wanted to know, and a lot of things we wished we had known sooner. Our knowledge is based on personal experiences and hundreds of hours of research and information from doctors and conferences we attended and from talking to many myeloma brothers and sisters and from reading your blogs. I am leaning toward writing a book based on the best of these blog entries, incorporating some of the most current multiple myeloma information, and incorporating my perspectives as a lawyer, as a spouse and care-giver, and as a multiple myeloma widower.
Some may find this information and its presentation a little fatalistic. I am a hopeful person. When Sue was diagnosed with multiple myeloma we entered into her treatments with high hopes and reasonable expectations of a good outcome. But I am realistic, as well. The statistics are sobering: approximately 33% of people diagnosed with multiple myeloma will die within a year of the diagnosis; approximately another 33% will die within one to five years; and the other 33% will pass the five year mark with indefinite life spans. According to the American Cancer Society, in 2009 approximately 20,580 people will be diagnosed with multiple myeloma and approximately 10,580 people will die from it.
This blog entry (or these next several) on practical and legal advice could be a book in itself. As a matter of fact, my insurance company, USAA, sent me three practical booklets after I notified them of Sue's passing: "When A Loved One Dies: Coping With Grief"; "When A Loved One Dies: Legal and Financial Concerns"; and "Going On ... A Pathway Through Sorrow." I imagine you can get similar free booklets from your own insurance company.
In a nutshell, here is some free advice from one who knows:
1. Buy a Costco-sized shrink-wrapped case of Kleenex. And really, I do mean Kleenex and not tissue. The cheap tissues they give you for "free" in hospitals is so course it will make the end of your nose raw. Other varieties of generics are also like sandpaper. Anyway, buy a case of whatever you want to use. You will need them for yourself and you will need them for your family and guests who stop by to reminisce with you. Come to think of it, you might as well get them immediately after the diagnosis, because you and all connected with you will experience loss and grieving in degrees over the course of time.
2. Don't wait until your loved one (or you) is near death to prepare estate documents. Talk openly about these things as soon as the diagnosis is in. Shoot, why wait? We should all do it before we know we have a serious and life-threatening disease. There are three documents I recommend as a minimum, and a fourth for those with significant assets. The three minimum documents are: (1) A Will; (2) A Power of Attorney For Health Care Decisions; and (3) A General Durable Power of Attorney for managing financial affairs. For those with significant assets, I recommend you create a Living Trust and transfer your assets into the trust. Did I mention you should do these things now? It doesn't get easier if you wait, and sometimes people wait too long.
3. Don't wait until your loved one (or you) is near death to talk about death, and funerals, and final wishes, and faith, and plan B. We started our discussions on these subjects almost as soon as Sue was diagnosed. (See my May 18, 2009, post What I'll Do After You're Gone and my June 3, 2009, post Decisions Decisions. ) These are discussions which can bring you closer together and help give all the discussion participants a sense of certainty and closure so that you are prepared for whatever tomorrow may bring. Susan and I did not limit these discussions to just us; we included our friends and our kids. This was beneficial because, when the end came for Sue, we were all already on the same sheet of music.