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.
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Thank you for this and your last post - I was diagnosed in August 2009 - stage IIIB lung cancer - I'm 46 and my husband is 71 - not the way we thought we'd be spending 2010. The first thing I did was call our attorney and transfer assets - made out our wills and POAs. I'm still hopeful, obviously, but things have a way of going south very quickly. The funeral issues still have my family in an uproar - no one wants to talk about it but me. Guess I'll just set up what I want, pay for it in advance and leave a list of instructions that I hope they'll follow. I'm so sorry for your loss, and hope my husband does as well as you when I'm no longer around.
ReplyDeleteSorry to hear about your wife- I came by this posting accidently. My best friend had multiple myeloma and the actual Velcade cause dhis death- the nurses and satff at the oncology day ward ever recognized the creeping neuropathy that triggered eventually his vagus nerve to be paralyzed. I feel so badly for every one with cancers. I think it is horrendous to watch the poison they are subjected to on top of the cancer- I hope one day we can treat people without killing them off way before the disease kills them.
ReplyDeleteRegarding your book idea, George: GO FOR IT! You are a gifted writer and, reluctantly, somewhat of an expert in this field. I have "enjoyed" following your blog, if you can call following the premature ending of such a special life "enjoyable". But let it be known that we love you as much as we loved Sue and continue to send warm thoughts your way as you transition to this new phase in your life.
ReplyDeleteThere are a number of web-based softwares for writing and publishing the book which may give you more control over what is invested since it is possible to produce the books one at a time rather than doing a "run" of 1000's and ending up on the "remainder" shelves, thus eating up any profits that might be derived and assigned elsewhere.
ReplyDeleteI couldn't agree with you more about discussion of pre-death issues. I did do this with my mother, but in the end she assigned all her POA, etc to someone else - certainly her choice. But I was able to grieve the absence of her in my life rather than the surrounding issues of guilt, "if only's" and other end-of-life, end-of-era, endings which only increase the stock for Kimberly-Clark.
Thank you for finding a way to further education about MM - I have a relative with it - and to further family and friend relationships right up to the open door.
George:
ReplyDeleteEven in the midst of your grief, your generosity and wisdom are remarkable. Though I do not know you personally, your compassion, love for Sue, and compelling honesty, as seen through your blog, has greatly affected me. Thank you. Write the book, I'll read it.
Sean M.
www.myelomayoureloma.blogspot.com
Thank you for thinking of others even in your time of loss. What a caring heart you have.
ReplyDeleteThank you for your practical advice. I know that someday I will be facing the same situations as my husband has Multiple Myeloma. I am so sorry for your loss. I've never met either you or Sue but was following her progress and was shocked that her condition deteriorated so rapidly.
ReplyDeleteThese are things most people put aside and don't want to face. Until necessary.
ReplyDeletePerhaps adding a side of Puffs Plus with Lotion or super soft Kleenex to your book will boost sales.
I have so enjoyed reading your blogs. You are a fabulous writer, and a book that you have written would be one that I definitely would read. I like your advice and the statistics really put it in perspective. I know we all wish that we were in that top 33%, but what are the chances....1/3.....not very good odds. I am still shocked that Susan passed as quickly as she did. Life is full of twists and turns, and our fate seldom lies in our own hands. My memories of Susan will live in my heart until it is my time for me to join her. Please keep writing. You are very gifted.
ReplyDeleteSorry to hear about your wife, with this blog, people will know in that similar situation of yours how to prepare all legal matters regarding the transfer of papers and proceedings.
ReplyDelete