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.

Rest in peace, Ellen Stovall

Take a moment to read this article about Ellen Stovall, diagnosed with Hodgkin's lymphoma at age 24, battled three bouts with cancer, and spent more than three decades advocating to improve the care of cancer patients.  Ellen passed away earlier this week as a result of heart complications related to her cancer treatment.  May she rest in peace and may we continue to support and celebrate her important work.

Just a quick post today to share this very important article from The Wall Street Journal which appeared on line today and was posted by Kathy Guisti, founder of The Multiple Myeloma Research Foundation. I'm thankful for all of those who are bringing attention to multiple myeloma and the tremendous progress that is being made in advancing a cure.

Time flies.  As I look back on my last post, nearly two years ago, there's so much that has transpired.

With a new year, I'm resolving to do a better job of keeping this blog up to date, as during the years my family has been living with multiple myeloma, many people have reached out to share their stories, and to let me know that our story has helped them.

Here's what has happened since February 2014....

In May 2014, I was able to accompany Deana to her appointment with Dr. Agha.  Unfortunately, Deana was not responding to the treatment I described in my February post.  Several others had been tried, and they too, were proving ineffective.  Dr. Agha told me he was worried and that he felt we needed to find a promising phase 2 clinical trial.  He had investigated a possibility at Dana Farber, but it wasn't a fit for our situation.  At this time, the main goal was to postpone the time until Deana would need a second stem cell transplant.

Since I suspected this prognosis was going to be the case, I had taken some measures in the week prior to this appointment to reach out to Winship Cancer Center and specifically, Dr. Sagar Lonial, who I had met shortly after Deana was diagnosed when I attended a multiple myeloma workshop offered by The Multiple Myeloma Research Foundation.  (If one of these sessions is offered in your area, I highly encourage you to attend.)

When I first met Dr. Lonial, I shared with him the basics of Deana's case, and he immediately offered his help should it ever be needed.  The time had come.  In addition to the acquaintance with Dr. Lonial, one of my Athens (Georgia) friends was a patient of his.  Now, it is never fortunate to have a friend with cancer...however, it was fortunate that she was able to assist with getting me through to the nurse immediately.

As we left UPMC on May 5th, Deana's records were already headed to Winship and an appointment with Dr. Lonial was being arranged.  As a world renowned multiple myeloma researcher, Dr. Lonial maintains a very full schedule, so we considered ourselves extremely lucky to get an appointment with him for June 6th.

Deana flew in from Pittsburgh the night before and as always, we had a grand time together.  We enjoyed a delicious Italian dinner and spent the night at the beautiful Emory Conference Center hotel. It is an oasis in the midst of Atlanta and I highly recommend it.

We arrived at Winship where everyone we encountered was incredibly welcoming and friendly.  The appointment with Dr. Lonial was all we hoped for.  He was not alarmed by the situation and felt there were viable options to explore. We had a lengthy conversation about all measures to postpone the time to transplant, since Deana only has enough stem cells banked for one more transplant.  (As an important note, we learned that Winship's protocol for stem cell harvest is to obtain 15 million cells and to divide them into three bags of 5 million -- enough for three transplants.  UPMC apparently separates the 15 million into two bags of 7.5 million -- enough for two transplants.  I suggest anyone preparing for stem cell harvest investigate this matter carefully.  I'm not up to date on the current recommendations and would not want to offer incorrect information.  I wish that I would have known this prior to Deana's harvest so that we could have maximized our options.)

Dr. Lonial suggested a bone marrow biopsy and blood work so that he could get his own results which would enable him to choose the best option.  Deana was not a huge fan of the bone marrow biopsy at that point, although the subsequent ones at UPMC were much better than the very painful first one.  She was assured that the Winship team are expert at BMBs and that she would be given good drugs to help.  Whatever they gave her, I want some.  She was quite the character after we left Winship.  Even now, she tells me that she asks when she can have her next BMB because the experience is so good there.

My memory gets a bit hazy here, as I had a few life changes occur after we left Winship that day.  In brief, Dr. Lonial reviewed the results and was able to get Deana into one of his clinical trials.  She began treatment in August and within two cycles, she was back in remission.  Yes, we were (and remain) incredibly thankful. For me, the most amazing part was Deana sharing that Dr. Lonial told her that he knew the drug was going to work, because he had sent some of her samples to his lab and had them tested with the drug.  What he wasn't certain of was how Deana would respond to the drug in terms of side effects.  I cried when I heard this because it solidified that when facing cancer, it is so important to have access to the great minds doing the groundbreaking work on your particular form.  I cannot say it enough -- we are so thankful.

So, for the last 14 months, the new normal consists of Deana heading to Atlanta every three weeks for her appointment, which takes about 5 hours.  The success she is experiencing with this drug has caused her to be a bit of a celebrity at Winship.  She's been filmed for a video and her story was featured the Summer 2015 issue of the Winship magazine.  Last month, I was finally able to accompany her to her appointment and was thankful for the opportunity to express my gratitude to all of the wonderful people who are taking such good care of my sister.

If you are interested in being entertained by Deana's accounts of her travels to and from Atlanta, although she doesn't post often, she has some humorous stories on her Caring Bridge site.  I continue to be inspired by my sister and her strength and determination.  I am not sure that I would be as brave in these circumstances.

I hope that 2016 will be the year a cure for cancer is found.  Until that time, though, I will do what I can to raise awareness and to help others who are in this fight.