Monday, February 29, 2016
One MM Warrior's Story
As promised, I'm sharing (with her permission) a recent blog from Multiple Myeloma Mom. This is such a moving and honest account of her journey. In order to not take away from her story, I'll just note that I'm inspired by her courage and thankful for her generosity. Let's keep advancing the cure.
Thursday, February 25, 2016
It's OK to be upset -- and it's OK not to be upset
Thought I would make a quick post to share this terrific video recently featured on CURE's website where Dr. John Marshall discusses the emotional responses of cancer patients. Stay tuned for a great blog entry I will share shortly from a very brave MM warrior who was courageous enough to share her struggles.
Sunday, February 14, 2016
The Unanswerable Question
In the sermon at church today, our pastor reminded us of Matthew's Gospel and the Jesus' teachings to pray for those who persecute you, reminding us that God causes it to rain on the just and the unjust alike. It was an interesting follow up to an article I read in this morning's New York Times,"Death, the Prosperity Gospel and Me"by Duke University professor Kate Bowler.
Dr. Bowler asks the question that I imagine many cancer patients ponder, even if only in the deepest recesses of their hearts -- If God indeed rewards the faithful, why did I get cancer? She's 35, married with a young child, and is accomplished in her career as a historian of the American prosperity gospel. For those unfamiliar with this term, (and admittedly I was until this morning) "the prosperity gospel is the belief that God grants health and wealth to those with the right kind of faith."
This article is deeply moving, as Bowler examines her topic anew, now through the lens of her personal journey as a cancer patient. I won't delve into her dissection of the continued explosion (and perhaps overuse) of the term "blessed" in our society -- that alone makes the article worth reading.
If you aren't able to make time for the whole piece, I highly recommend starting with the paragraph that opens "One of the most endearing and saddest things about being sick is watching people's attempts to make sense of your problem." I am confident that those affected by cancer will resonate with Bowler's experience.
Though I am in the caregiver role, I related to her story and am grateful for her courage in sharing her experience. A cancer diagnosis deeply affects the lives of patients and the ones they love. We find ourselves struggling for answers, including the one that for me is unanswerable -- Why my sister?
Dr. Bowler asks the question that I imagine many cancer patients ponder, even if only in the deepest recesses of their hearts -- If God indeed rewards the faithful, why did I get cancer? She's 35, married with a young child, and is accomplished in her career as a historian of the American prosperity gospel. For those unfamiliar with this term, (and admittedly I was until this morning) "the prosperity gospel is the belief that God grants health and wealth to those with the right kind of faith."
This article is deeply moving, as Bowler examines her topic anew, now through the lens of her personal journey as a cancer patient. I won't delve into her dissection of the continued explosion (and perhaps overuse) of the term "blessed" in our society -- that alone makes the article worth reading.
If you aren't able to make time for the whole piece, I highly recommend starting with the paragraph that opens "One of the most endearing and saddest things about being sick is watching people's attempts to make sense of your problem." I am confident that those affected by cancer will resonate with Bowler's experience.
Though I am in the caregiver role, I related to her story and am grateful for her courage in sharing her experience. A cancer diagnosis deeply affects the lives of patients and the ones they love. We find ourselves struggling for answers, including the one that for me is unanswerable -- Why my sister?
Thursday, February 11, 2016
Honoring Pat Killingsworth
Today is another day where the benefits of social media are apparent. I had learned a few days ago that MM warrior Pat Killingsworth was not doing well. This news saddened me deeply, for, although we had not been in touch recently, Pat was incredibly complimentary of my columns for The Myeloma Beacon. He offered so many words of encouragement that lifted me and my family in the early days of Deana's diagnosis and our new life as a MM family.
Today, I learned that Pat's fight is over. A beautiful tribute from Cynthia Chmielewski has brought me to tears. Pat gave so much to the MM community. He will be missed beyond measure.
I have read material that suggests the terms "fighter" and related variations not be used when describing cancer patients and their lives with cancer. For me, though, fighter is such a powerful word -- and it is a word to describe Pat.
Pat fought his personal fight and he fought alongside others in their fights. He contributed so much to the MM knowledge base, blessing his fellow warriors and their caregivers with his inspiring words and can-do attitude. He was a shining example of a person who did not let this diagnosis affect his living a full and vital life -- and he generously shared his journey with others, so that they would be able to benefit and draw strength from his story.
I am grateful to have known Pat, even tangentially and I send thoughts and prayers to his family and friends at this difficult time, hoping they will take comfort in the knowledge that Pat will live on in the hearts of many whose lives he touched.
Today, I learned that Pat's fight is over. A beautiful tribute from Cynthia Chmielewski has brought me to tears. Pat gave so much to the MM community. He will be missed beyond measure.
I have read material that suggests the terms "fighter" and related variations not be used when describing cancer patients and their lives with cancer. For me, though, fighter is such a powerful word -- and it is a word to describe Pat.
Pat fought his personal fight and he fought alongside others in their fights. He contributed so much to the MM knowledge base, blessing his fellow warriors and their caregivers with his inspiring words and can-do attitude. He was a shining example of a person who did not let this diagnosis affect his living a full and vital life -- and he generously shared his journey with others, so that they would be able to benefit and draw strength from his story.
I am grateful to have known Pat, even tangentially and I send thoughts and prayers to his family and friends at this difficult time, hoping they will take comfort in the knowledge that Pat will live on in the hearts of many whose lives he touched.
Tuesday, February 9, 2016
The Small World of Multiple Myeloma
I've been known to say that every myeloma patient probably wishes they had a dollar for every time they tell someone they have myeloma, only to have the person respond, "Oh, melanoma..." Given that myeloma is still a less common cancer it remains unknown and unheard of to many.
After Deana's diagnosis, I found myself surprised at just how many MM connections there were in my life. Those connections grew as the months passed -- and they have continued to expand, bringing us into an inspirational community.
A mutual friend introduced me and Dana Davis back in 2011, after he heard of my sister's diagnosis. To this day, Dana and I have not met in person -- and we've only exchanged a few emails. However, he is always on my mind when I'm in thought and prayer for those battling MM.
This morning, as I was catching up on some reading, I came across a terrific article from the October 2015 edition of CURE magazine, which featured a photo of Dana and his story. Like Deana, Dana is part of a clinical trial. I encourage you to take some time to read his story and learn more about the advances that are being made in MM treatment.
CURE magazine is an excellent resource -- and it's free to patients and caregivers. If you aren't a subscriber, visit the website at the link above and you'll soon have access to this terrific publication. In the battle against MM, knowledge is power -- and reading stories like Dana's give great hope to MM warriors and their support teams.
After Deana's diagnosis, I found myself surprised at just how many MM connections there were in my life. Those connections grew as the months passed -- and they have continued to expand, bringing us into an inspirational community.
A mutual friend introduced me and Dana Davis back in 2011, after he heard of my sister's diagnosis. To this day, Dana and I have not met in person -- and we've only exchanged a few emails. However, he is always on my mind when I'm in thought and prayer for those battling MM.
This morning, as I was catching up on some reading, I came across a terrific article from the October 2015 edition of CURE magazine, which featured a photo of Dana and his story. Like Deana, Dana is part of a clinical trial. I encourage you to take some time to read his story and learn more about the advances that are being made in MM treatment.
CURE magazine is an excellent resource -- and it's free to patients and caregivers. If you aren't a subscriber, visit the website at the link above and you'll soon have access to this terrific publication. In the battle against MM, knowledge is power -- and reading stories like Dana's give great hope to MM warriors and their support teams.
Monday, February 8, 2016
How Can I Help?
How Can I Help? It's a question I suspect we have all asked at one time or another, especially when we learn of a friend's serious diagnosis. Advice abounds on this matter -- and some of it is contradictory. It's easy to become paralyzed with indecision -- not wanting to say or do the wrong thing, yet at the same time wanting to be of help.
This morning, I decided to clean out my extensive multiple myeloma file and found this terrific piece from the April 2013 edition of Real Simple magazine (one of my favorites). Author Didi Gluck (@didigluck on twitter) offers some excellent advice. If you take nothing else from this article, the most powerful sentence is, "I love you, and whatever road you're going down, I'm going down it with you."
While I can't speak to the experience of the patient, this sentiment means a great deal to the family as well. As we approach the five year anniversary of our life with MM, (and Gluck also suggests remembering anniversaries) I reflect on the tremendous support we have received from our network of friends. To this day, many still ask often about how Deana is doing -- those are the friends you know are in this with you, for the long haul. The strength we draw from these friendships and the many thoughts and prayers has been a critical component of our ability to keep charging ahead.
In this file, I found many notes from my friends -- and they warmed my heart all over again.
If you know someone who is in a serious health battle, consider reaching out today, even if the message is a simple, "I'm thinking of you." Trust me, it will be appreciated.
This morning, I decided to clean out my extensive multiple myeloma file and found this terrific piece from the April 2013 edition of Real Simple magazine (one of my favorites). Author Didi Gluck (@didigluck on twitter) offers some excellent advice. If you take nothing else from this article, the most powerful sentence is, "I love you, and whatever road you're going down, I'm going down it with you."
While I can't speak to the experience of the patient, this sentiment means a great deal to the family as well. As we approach the five year anniversary of our life with MM, (and Gluck also suggests remembering anniversaries) I reflect on the tremendous support we have received from our network of friends. To this day, many still ask often about how Deana is doing -- those are the friends you know are in this with you, for the long haul. The strength we draw from these friendships and the many thoughts and prayers has been a critical component of our ability to keep charging ahead.
In this file, I found many notes from my friends -- and they warmed my heart all over again.
If you know someone who is in a serious health battle, consider reaching out today, even if the message is a simple, "I'm thinking of you." Trust me, it will be appreciated.
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