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.

Beautiful Scarf Created by daughter of MM warrior

Those of us who have loved ones who are MM warriors seem to universally be committed to doing all we can to advance a cure.  Take a look at this absolutely stunning scarf which was made Sarah, whose father was a MM warrior.  It is one of a kind and all proceeds will be directed toward MM research.

The Power of Support Groups

Early in Deana's MM journey and while I was still living in the greater Atlanta area, I was so thankful to connect with the Atlanta Multiple Myeloma Support Group, led by Nancy Bruno.  I still enjoy receiving the monthly newsletter and encourage you to visit the group's link and take a peek at the latest edition.

In an email exchange with Nancy over the last two days, she reminded me how important it is for patients and caregivers to join a local support group to share treatment experiences.

The newly diagnosed need to hear from those who have been down this road as it helps to address their fears -- and there are many fears!  Nancy suggests that patients and caregivers attend meetings when possible, even if you aren't feeling great and you don't want to discuss treatment.  There's no requirement that you provide an update and often you will gain strength from being present.

When patients and caregivers are doing great it is uplifting for the newly diagnosed to see them.  Again, this helps to allay fears -- there are people who are living with MM and thriving.  (Look no further than the Moving Mountains for Multiple Myeloma team who are climbing Mt. Kilimanjaro as I write this.  There are four patients in this group -- they are committed to living a full life and dedicated to advancing a cure.)

There's much to be said for the concept of "pay it forward."  As Nancy observes, you may need that karma at some point!

Nancy also shared that research has demonstrated that patients in support groups have better outcomes in part because they are empowered from the expanded knowledge they acquire.

There are over 140 MM support groups in the US.  Find the one nearest you at www.myeloma.org.

Just learned about another opportunity to hear about the great strides being made in multiple myeloma treatment.  Take some time on Thursday to participate in Cure Talks where Anne Quinn Young of the MMRF will discuss the significance of the progress in myeloma research in 2015, review MMRF's research initiatives and inform patients of what to expect in 2016. Knowledge is power when facing multiple myeloma.  As part of a caregiving team, I find these programs very beneficial and am grateful to organizations like MMRF who make this information available to the layperson.

Honoring the life of Louisville's Jim King

It has been a year since Louisville lost one of its most devoted citizens, Jim King.  Though I never had the pleasure of meeting Jim, I had heard much about him and his many contributions to the community since my arrival in the city in July 2014.

When I read news of his passing last January, I was sad to learn that the cause was multiple myeloma, which he had been battling for two years.  I started a letter to his family, which I never finished, and regret to this day.  I couldn't find the right words to express my sympathy to them, an unusual situation for me.

I was fortunate to have the opportunity to meet the King family last October when The University of Louisville honored Jim with the Wilson Wyatt Award which recognizes those individuals who have made substantial contributions to civic life.  Jim truly embodied the spirit of this award and I was grateful to be part of the presentation.

Jim's brother, John, and I stay in brief contact over Facebook, where he shares memories of his time with his brother and courageously tells of how much he misses him.  My heart aches for him and for the entire family, especially today, as I know how challenging these anniversaries can be.  

From what I have learned about Jim and John, I feel a kinship, as my relationship with my sisters is very strong as well.  From the moment Deana was diagnosed, I was intent on learning all I could and engaging in whatever activities were necessary to keep my sister with us.  We've been blessed for nearly five years now, but we have learned we cannot take this for granted.  Every day is a gift.

In addition to the link above, you can learn more about Jim here too.  I remain committed to doing all I can to advance a cure, for the King family, my family, and all others affected by multiple myeloma, and I hope you will join me as you are able.

Three Weeks Go So Fast!

This photo was taken three weeks ago yesterday, when Deana's oldest, Andrew (16) accompanied her to one of her treatments at Winship Cancer Center.  Time flies, as Deana was back at Winship yesterday.  I think of all that we have each accomplished in those three weeks -- each day is a gift. Each day I am thankful that my sister is alive.

At one point yesterday, Deana texted with glee that she was going to have a bone marrow biopsy because the doctors wanted to see how low her paraproteins are.  Since you may recall from a few posts ago that Deana finds biopsies at Winship to be a positive experience she told them she was more than glad to oblige in the name of science.  (Yes, my sister is rather funny.)  Unfortunately, the protocol requires that someone else be present to drive following the procedure, so the biopsy has been postponed until her next visit.  We were thrilled that Deana's hemoglobin was 12.1, a condition she attributes to steak and red wine.  Whatever it takes...

While we remain grateful for Deana's progress, we keep in mind that there are others who are not as fortunate and thus we continue our work to advance a cure, while we also hold all of our fellow mm warriors and their caregiving teams in our thoughts and prayers.

Moving Mountains for Multiple Myeloma

I am excited (and admittedly a bit jealous) for those who are participating in the upcoming Moving Mountains for Multiple Myeloma trip to Mt. Kilimanjaro.  Most importantly, I'm thankful for their efforts to raise awareness and research funds to continue the great work that is occurring toward advancing a cure for multiple myeloma.

I'm sure that each member of this team will chronicle the trip in his or her own way.  The Multiple Myeloma Research Foundation's Alicia O'Neill has become a friend to me during my family's journey with MM.  Alicia is one of the brave adventurers who is taking on the mountain.  Her blog continues to inspire me.  She truly embodies the idea that there is no dream too big.  I wish her the best on this journey and hope you will follow her and the other team members, spread the word, and support the cause as you are able.