It Bears Repeating....

Perusing today's New York Times, I came across another terrific article dealing with the challenging topic of What Not to Say to a Cancer Patient. The author includes tips shared before, yet these always bear repeating, especially as we head into a season heavy with gatherings.

As the captain of a cancer-fighting team, many of these suggestions go beyond conversations with the patient herself (or himself). Please consider this when talking with family and close friends of a cancer warrior.

The author notes that every cancer is different - an important fact that is daily changing the approach to treating cancer. Each patient presents uniquely and will respond to the treatment in an individual way. While Deana has been termed the rock star of her trial, there are plenty of others who unfortunately did not have the excellent results Deana has been experiencing. For them, we hope that new opportunities will present themselves...soon.

For us, last Monday was treatment day. For those readers following our journey, my sister is doing VERY well and we are VERY grateful... and as I constantly share, lucky to be in the care of the outstanding team at Emory's Winship Cancer Center.

In our family's faith, the season of advent began yesterday. It is a time of waiting and preparation. In addition to my constant gratitude that Deana is here to celebrate another Christmas, I will continue to wait for a day when there will be a cure for all cancers. And - I will not cease in my preparations, remaining focused and advocating at every turn, for Deana and her fellow warriors.

"If there's anything I can do...."

"If there's anything I can do...." -- It's a phrase heard often by those battling cancer and those closest to them. Whether it's innate or a product of our upbringing, we seem to have great capacity for generosity, especially to help those who are facing challenges.

There's much writing about using caution when offering to help -- notably that if you don't offer something specific, you risk creating stress, as few people are comfortable articulating their needs.

Through the years, I've marveled at how some friends jump in immediately, using a variety of tools to mobilize all those wanting to help. There are some terrific websites such as Meal Train and Take them a Meal which make it easy to organize the "village." Deana was fortunate to have many people assist with meal preparation during the nine months leading up to her transplant.

There are many other things you can do to support someone coping with a cancer diagnosis. Here are a few suggestions I've learned during our five year journey:

*Accompany your cancer warrior to treatment.
If you haven't been through it, trust me when I tell you that it is not as romantic as it looks on television. There are many hours of sitting around. Having a friend or loved one there is a visible sign of support and can do much to make the time pass.

If you can't spare a day to sit at the hospital, offering to drive to and from treatment, or offering to take children to activities that coincide with treatment days, can also be a huge help.

*Care packages
Knowing that someone is thinking about you and cares enough to put together some goodies for you means so much. We were blessed to have friends and family far and wide who sent little remembrances or dropped off a bag of treats. I've recently read about some clever ideas such as sending gummy bears for times when there's a desire to bite off someone's head, or a bag full of yellow items, designed to bring sunshine.

If your cancer warrior has children, supporting them is also appreciated. Depending on the child's age, coloring books, crayons, DVDs, and the like can all help to provide activities to pass the time.

*Visible signs of support
This is an area where you'll have to know how comfortable your warrior is with public displays of support. When Deana was diagnosed, we ordered dozens of pins, bracelets, decals and other multiple myeloma awareness paraphernalia. It is quite easy to personalize t-shirts, hats, buttons and stickers that can demonstrate your support. Sharing on social media widens the net and increases the good energy.

*Donate
This continues to be one of the more difficult areas as it seems that so many who offer help want to do something more direct and tangible. This is truly understandable -- and yet, the medical advances that have enabled so many patients to survive cancer were made possible by financial support.

As we enter the holiday season, please consider contributing to the charity of your choice, in honor or in memory of a cancer warrior dear to you.

Our family could never fully express our gratitude to The Multiple Myeloma Research Foundation and The Leukemia and Lymphoma Society for their tireless efforts to fund research and provide support to patients and their families. Their commitment to advancing a cure has made it possible for us to have Deana with us.

The photo above was taken yesterday, as Deana's daughter Clare wrapped up her final performance as Belle in her school's production of Beauty and the Beast. (She was outstanding...) I encourage you, any time you are hesitant to contribute, think about this photo and know that your generosity indeed has direct impact.

Cycle 39 -- It's Divine!

Happy Halloween!

It was fun to have our Emory day fall on a holiday. Deana planned great costumes for us -- we came dressed as a doctor and nurse, with scrubs provided by Darrie. (We learned that Darrie outfitted us in the Versace of scrubs -- very high quality!)

Here we are...off to Winship Cancer Center!

When we arrived, our LPN Michelle took one look at us and asked us what we had on. We proudly declared -- It's Halloween! As we got back to the Clinical Trials area, Keino (who is at the hub of everything) also gave us a quizzical look and then realized these were our costumes! We thanked the great team for all they do for us with a big bowl of candy - which all seemed to be enjoying as the supply dwindled considerably over the course of the afternoon.

Everybody has given us high marks for creativity-- Darrie went so far as to make us official-looking name badges and my sister-in-law Margaret lent me a lab coat. Deana and I have found that walking around the hospital dressed like this is a VERY different experience from being in everyday clothes. It really lends credence to the idea that we make a lot of judgments based on visual cues.

Now for the important stuff -- Deana's numbers are terrific. Her hemoglobin was 12.7 -- this is the highest it has ever been. We were so excited -- lots of Aggie Whoops and some high fives too. On this visit, Deana had her quarterly infusion of Zometa - a drug that helps to maintain her bone strength. (As a reminder, we have been exceptionally blessed that Deana has not had bone involvement -- many MM patients do.)

The only new thing to emerge today was the need for additional fluids. Although Deana's creatine levels are in the normal range, it is advised that she be on the higher side of normal and this requires more fluids. If you see Deana, ask her how much she's had to drink that day -- and by drink we mean water or something similar.

When Deana and I were talking yesterday she reminded me that she had set a goal to be the best MM patient ever. She's clearly achieving that and more. Again today we were told she is the rock star of this trial, that everyone is so excited about her and that so many people want to meet her. Our awesome coordinator Kathy asked Deana if she gets tired of hearing that she's the rock star -- and we both quickly shouted, "Absolutely NOT!"

Deana has also been so incredibly generous in speaking to other patients and assured Kathy that she is always glad to speak to anyone who wants to meet or talk with her.

Needless to say, I am VERY PROUD of my sister. She is BTHO MM every day.

Deana flies back to Pittsburgh in the morning. I always hate to see her go. I told her that it still stinks that she has cancer, but selfishly, I like getting to spend this time with her.

For all the love, support and prayers we receive from everyone on our team, we remain grateful.
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Photos from today:

Here's my super brave sister - she's always laughing and smiling, even when significant amounts of blood are being taken.

I've been a doctor for a year -- but not this kind of doctor. It was fun to try it out for a day.

Deana requested I share this and let our team know that this tray represents $35.

Cycle 38 - FEELING GREAT!

Another day at Emory’s Winship Cancer Center is in the books. It was an uneventful visit, though we are grateful for that.  Deana’s hemoglobin was 12.1 – a very good number. I am attributing it to the spinach I put in the omelet I made her Sunday morning. She says there wasn’t enough in there to make that much of a difference, and truth be told, she’s probably right.

People express sympathy that Deana has to fly in every three weeks and they question whether there will be a day where Deana can get this treatment closer to home. We appreciate that concern; however, let us assure you, we are all so very thankful that Deana is being treated at Emory.

From the moment we arrive Deana is treated like royalty. The staff who handle check in are always friendly and we are then met by the wonderful Michelle, who offers a warm blanket and escorts us back to the clinical trials area.  We walk through the door and Keino yells an enthusiastic “Pittsburgh!”  (She also tells Deana she loves her when we leave.) Alvin, one of the selfless volunteers, comes by with a cart overflowing with snacks and lets us have as many as we want.

Deana and Colleen pepper talk of children in between all the official questions and exam. (Yesterday we were glad to see Hannah, who fills in when Colleen is out.) Coordinator extraordinaire Kathy was on vacation, but she sent Jennifer to take care of the details – and although we are BIG Kathy fans, Jennifer was terrific too.

In between Kathy and Colleen’s visits, we are cared for an excellent team of nurses. Yesterday we had Tina, whose daughter is a high school senior – she and Deana traded war stories of going through that experience. It is homecoming season, after all. Carrie always provides the best restaurant recommendations and she and Deana entertain one another with stories of the Housewives shows.

Sometimes we see one of the doctors working on the trial but often we do not. And sometimes we see Melanie, who plays an essential role in keeping Dr. Lonial’s trials running smoothly. We give a big thank you to Melanie for sending Katherine to see us so Deana could ask some questions regarding new charges that are appearing on her bills.

On Saturday October 1, I participated in the Winship 5K which proved an inspiring way to start my day. This event raises money to support the outstanding research taking place – research which is critical to keeping Deana with us. Many of the Emory team were still talking about their experiences at the race. I hope Deana will be able to be in town for it next year.

This is the reality of cancer treatment. It really isn’t glamorous. There’s a lot of sitting around, waiting. The challenges with insurance seem to never end. Yet, all of it is made better by the Winship team, full of caring professionals who take exceptional care of my sister. In this season of Thanksgiving, my gratitude for them cannot be adequately captured in words.

I am also very thankful for the love and support of Peter’s Aunt Anne, who continues to host Deana in her home. There is no telling what mischief those two are getting into while I am writing this. You know you’ve married well when that part of your family treats your sister as one of their own.

Deana has specifically requested a shout out to our fellow Aggie, Butch, who, at the Pittsburgh A&M Club game watch party on Saturday told her that he follows the caringbridge site religiously. Butch – a big Whoop! for you. We also got a smile out of the caringbridge post from Libby, a fellow MM warrior who knows that we are Aggies and sent a message to tell us how happy she was that A&M beat Tennessee on Saturday. We are thrilled at the success our beloved team is experiencing this season and hope that it will continue. However, we must emphasize that our love of A&M transcends the activities on the gridiron. It is a profoundly special place to us.

I just returned from taking Deana to the airport and now we’ll each get back to our daily lives for 19 days. Then she’ll be back and the cycle will repeat. I’m so pleased to be back in Georgia so that I can fulfill my duties as team captain in the manner I prefer. I must also note that Deana is not happy with my photo from yesterday and requested that I crop it, which I have not done. Be advised that she is wearing a huge sweatshirt and is not as large as she appears in the picture.

As always, I close with tremendous thanks for the continued love and support. The journey continues…

Cycle 37 -- Here we come!!!!

I do believe I have previously quoted some platitudes about good intentions and yet here I find myself again, always with the good intentions to provide updates about what's going on with Deana -- and then weeks, even months, go by without me taking some time to do that.

Today was a treatment day - made a bit more special in that September is Blood Cancer Awareness Month. Allow me to indulge in a moment of thanks for the great work of The Multiple Myeloma Research Foundation (MMRF) and The Leukemia and Lymphoma Society (LLS)-- two organizations that are doing so much to advance research and provide essential support for cancer warriors and their families.

If you don't think that your contributions to these organizations make a HUGE difference, let me assure you -- THEY DO! The clinical trial that has allowed us to have two more years (and hopefully MANY more) with Deana wouldn't be possible if the funds weren't there to support the work of these outstanding doctors and the medical professionals who support them. (A big shout out to all the terrific nurses - and our awesome coordinator, Kathy - who make our days at Winship Cancer Center so enjoyable.) Deana has again been fortunate to receive financial support from LLS to offset the cost of the copays for her treatment.

Since I've last posted, we have been graced with Clare's presence at a treatment day. It was just wonderful to have her be part of a Georgia weekend and allow her to meet all the people who are doing so much to help her mother. On Deana's last visit, her dearest friend from college days flew in to surprise her. I had so much fun conspiring with Mecca and I'll never forget the look on Deana's face when Mecca rolled down the window as we pulled into the curbside pickup. Deana's hand went to her mouth -- and then she started to cry.  I have posted some photos to Facebook from that fun girls weekend - full of food, drink, laughs and love.

This weekend, Deana and I were glad to watch our beloved Aggies BTHO Auburn on Saturday night. A weekend with an Aggie victory is a sweet weekend indeed. Yesterday, we decided to get some culture and went to Act3 Productions performance of Clare Booth Luce's The Women. Though the play was written in 1936, it holds up well and did a masterful job of representing the good and bad of women's friendships.

And then there was today -- we arrived at Winship and were delighted to see Dr. Kaufman, who is the lead researcher on Deana's study. Dr. Kaufman was quick to let Deana know that she remains the ROCK STAR of this trial. There are some changes that are happening with the trial - none of which affect Deana, but it is important to note that her determination and courage have allowed the researchers to consider how this trial could help other patients. They are planning to add about 15 patients to the study and these patients will be receiving a steroid along with the magic elixir that has previously been known as ABT -199.

ABT -199 now has a name -- Venetoclax. Deana and I have decided that ABT-199 is easier for us -- at least for now. She's glad she doesn't have to add the steroid, as the side effects from steroids are not fun for her -- or her family.

Venetoclax has been approved by the FDA for treatment of CLL -- a form of leukemia. It will be at least three years before the possibility of FDA approval for Venetoclax as a treatment for multiple myeloma -- and that is just fine by us. From a financial perspective, there are tremendous benefits to the clinical trial. These pills would literally cost THOUSANDS of dollars -- and we cannot be assured that even if the FDA were to approve Venetoclax that the insurance company would approve Deana taking it. (I will not go into the insanity that Deana went through last week with the insurance company relative to the prescription for her neupogen shot -- no one, especially no one dealing with cancer, needs to spend precious time dickering with insurance over medications that they have been taking for two years.)

Deana's lab report was awesome, and so, to celebrate our fantastic report, we devoured a delicious lunch at Thaicoon and then Deana humored me with some thrift store shopping...where we acquired a great little book about hikes near Atlanta which shall prove to be good fodder for upcoming adventures. (Should I mention that there was a breakage in the holiday decor aisle????)

And so we commence Cycle 37. We remain more grateful than words can express to everyone who has brought us to this place. We are thankful for the continued thoughts and prayers and humbly request that they keep coming.

In honor of Blood Cancer Awareness Month, please consider a contribution to one of the organizations above and/or give blood if you haven't done so in the last 56 days. I'm on my way to the donation center after I drop Deana at the airport in the morning...

Figuring out the "New Normal" -- Asking Questions

While reading a recent article in The Costco Connection, Coping with Cancer, it occurred to me that a post was in order. I truly have a lot to say about the world of cancer, yet it seems that finding the time to contribute to the dialogue is always a challenge.

The article I have linked to has a terrific text box with key questions to ask upon learning you (or your loved one) has cancer. A few weeks ago, I had the opportunity to attend a Blood Cancer Conference in Atlanta, which was organized by The Leukemia and Lymphoma Society. One of the presentations truly "hit the nail on the head" when it noted that when someone is diagnosed with cancer, it is one of the darkest moments of their lives. This is also true for the family members. Speaking from personal experience, there was nothing that could have prepared me for the moment my sister was diagnosed.

Through our experience, I have become ever more certain of the need for reliable information, including the gathering of tips from fellow cancer warriors and caregivers. There are no dumb questions -- you are dealing with a serious illness and the medical professionals on your team know that. Do not hesitate to ask questions -- lots of them. I would often go into Deana's appointments with pages of questions we had.

It is so important to have as much knowledge as you can handle (because there can be a point of overload) as you navigate your "new normal." As this article, and many others, suggest, it is a good idea to have a family member or friend with you at your appointments to serve as notetaker. This important member of your cancer-fighting team can debrief with you following the appointment to be sure that everything was understood correctly. If there are gray areas, those serve as good questions for the next appointment.

If ever I think that I am going to the extreme with my question-asking, I remind myself that while these doctors and nurses have many patients, I have only one -- my precious sister. I am thankful to be able to serve as her advocate, cheerleader and note-taker.

You must be sedated for a BMB....and other things we've learned in the last five years....

Two hours ago, I took Deana to the airport for her trip back to Pittsburgh.

Five years ago, I was on my way to the airport to get myself to Pittsburgh. The night before, we heard "multiple myeloma" for the first time.

Although it would be two days before this diagnosis was confirmed, I was deeply concerned by my brief research and needed to get to my family.

What a difference five years makes. So much of this difference is due to the outstanding work of the Multiple Myeloma Research Foundation (MMRF). Led by Kathy Guisti, MMRF has radically changed cancer research, accelerating the process by which promising drugs are brought to patients. My family is grateful.

I recently listened to a terrific podcast on Myeloma Crowd radio, where Dr. David Siegel of John Theurer Cancer Center was interviewed. I highly recommend this podcast to MM warriors and their caregiving teams. Dr. Siegel acknowledged that for MM, it is a completely different world than it was five years ago, with dramatic changes especially in the last year. He credited the MMRF for its work which has changed the drug companies' views with regard to clinical trials. A decade ago, researchers had challenges obtaining drugs for trial. Now, the companies are nearly banging down the doors to have their drugs tested. For my family, a clinical trial is currently making all the difference.

Deana now starts cycle 30 of ABT 199, also known as Venetoclax. The trial called for 10 cycles, but her response has been so outstanding, with no cancer detected in her recent lab work, that we continue on with the trial. Some might term this status to be "remission," Deana prefers "stable." (She credits "stable" to her fellow MM warrior Yvonne, who first introduced her to this descriptor.)

Though the future is promising for MM warriors, we cannot let down our guard. In the larger context, we must continue to push for funding for cancer research, and as we are able, we need to support those non-profit organizations that provide funding with gifts of our time and treasure. In Deana's case, as we continue to pray for her continued stability, we must always remain vigilant with regard to her health. We were reminded by one of the researchers at treatment yesterday that hers is not a normal immune system and thus, we need to be concerned, even when she gets what for one of us might be a simple head cold.

While Deana and I were at Emory's Winship Cancer Center yesterday, I asked her to share some of the most important things she has learned in the last five years.  Her immediate response:

You must be sedated for a bone marrow biopsy (BMB).

Dexamethasone has its good and bad points. You have lots of energy, but you gain weight and you are aggressive.

Get a port. (And get a bottle of port, too, if you feel so inclined.  Red wine is good for you.)

To these I add:

Involve a myeloma specialist right away, even if only to help you craft a plan that can be administered locally.  (More on this in a later post.)

Cherish every day and every thought and prayer directed your way.

Free Webinar on Friday, April 15th

Whie Friday April 15th represents Tax Day and many may be rushing to get theirs filed, I urge you to make time for the free webinar on Relapsed or Refractory Myeloma given by Dr. David Siegel of the John Theurer Cancer Center. Thanks to Myeloma Crowd for the information about this excellent opportunity to hear from one of the world's leading MM authorities.

Sean's Burgundy Thread -- Another MM Hero

Since Deana's diagnosis nearly five years ago, I've followed the stories of other MM warriors, including Pat Killingsworth, who I wrote about several posts ago.  Today, I share with you the latest from Sean's Burgundy Thread, written by another MM warrior who I have never met, yet to whom I feel close.  Sean writes for the Myeloma Beacon (as I once did) and continues to make tremendous contributions to the lives of his fellow warriors and their support teams.  I'm thankful for courageous people like Sean who generously share their lives with us.

Round 29

Today we found ourselves at Winship Cancer Institute at Emory University for Deana's 29th round on the clinical trial.  To be at this place is a blessing that defies description.  When Deana was accepted into the trial in August 2014 we were told it was a 10 cycle trial.  Since Deana is experiencing such outstanding results, she has remained on this wonder drug.  We pray that it will continue to prove effective until a cure is found.

I am thankful to be back in the area so that I may fulfill my duties as Captain of Team Beat the Hell Outta Multiple Myeloma (BTHO MM for short).  It would appear that I arrived not a moment too soon, as this morning, after the first round of blood was analyzed, Nurse Jenny asked Deana if she has been taking her Neupogen shot.  In layman's terms, Neupogen helps to keep Deana's immune system functioning well.  Deana admitted that she has missed the last two shots.  The result -- her white blood cell count was too low for treatment.  A real bummer.

But, there was hope.  Apparently, it has been found that some exercise can often increase the white blood cell count quickly.  So, we were instructed to run up and down the stairs for five minutes. After this cardio burst, blood was drawn again, the white blood cell count increased sufficiently and we were able to proceed.  Another interesting byproduct of the exercise -- Deana's hemoglobin was 11.7 in the first report and jumped to 12.4 in the second.  She was most pleased and is contemplating riding a bicycle to Emory from Aunt Anne's house from now on.

We met Deana's new coordinator, LaShante, who was most friendly and helpful.  Deana hopes she'll stick around for awhile, as this is her fourth coordinator in a rather short time.  (Everyone has assured Deana that she hasn't scared away the previous coordinators.)  Rapport with those on the caregiving team is so important, as I'm sure MM warriors will attest.  While of course these kind folks are "doing their jobs," their work is a calling.  The warmth, friendliness and compassion demonstrated by everyone we have been in contact with since coming to Emory has been exceptional.  Winship is a special place.  Miracles happen here.

We also ran into Dr. Nooka, one of the doctors on the MM team.  He mentioned that he needs Deana's report from her first bone marrow biopsy, which was taken in April 2011.  There is a lab in California waiting to compare that report against Deana's most recent biopsy to determine just how deep her response is.  This interaction reminded me how important it is to support research efforts.  It has been a while since I have been on that soapbox, so let me again urge those who want to help to consider contributions to Winship, to The Multiple Myeloma Research Foundation, The Leukemia & Lymphoma Society or other agencies that fund the research keeping my sister and many others alive.

A great deal of reading was accomplished, since there is much time where we are sitting and waiting. The highlight was the March issue of Real Simple, and this wonderful article, "Death in the Middle", written by Kristopher Jansma.  Jansma's younger sister is diagnosed with oral cancer at 21 and he poignantly describes his role as a caregiver.  Reading this piece, I offered up more thanks for all of those who have gotten us this far.  Five years.  Every day is a gift.

Jansma very accurately and eloquently depicts the reality of living with cancer --

When someone has cancer on TV or in a movie or even in most books, life tends to become temporarily suspended.  The patient sits dolefully in a chair somewhere getting chemo, perhaps losing her hair, and everyone else rushes to her side and sits around thinking about what it all means. How short, how precious is life!  What a silver lining it is to have this new appreciation of our priorities!

This turned out to be far from the reality.  Nothing was suspended.   Jenn still had to deal with all the ordinary things: work, boyfriend, furniture reorganization, dishes, rent, her roommate, etc.  Mundane or dramatic, life kept happening.  It turns out that chemo is more outpatient than fiction might lead  you to believe.  You're in the hospital receiving treatment for only a few hours a week -- then you're just a person out in the world looking for a parking spot.  You just also have cancer.

I read this to Deana while we sat there and she shook her head in agreement.  In my few trips to treatment, I notice there are people who sit alone for these hours on end.  Maybe they enjoy that time of solitude -- yet I wonder if some of them wouldn't welcome some company.  If you have a friend going through chemo, consider offering to accompany them to treatment.  Alternatively, you could put together a goodie bag of magazines, puzzle books, or share a favorite book of yours to help pass the time.  All the research shows that those who have strong support networks experience better results.

I'll take Deana to the airport tomorrow, where, as Jansma describes, she'll go back to the mundane. Work, making the children's lunches, driving to after-school activities, grocery shopping, laundry -- and most importantly TAKING HER NEUPOGEN SHOT!!!!  She is well aware that although I am still so proud of her and in awe of her bravery, I insist that she do a better job taking her medication as directed.  And, I have made it clear that I am enlisting all of those in our support network to help with this. Here's all you need to do -- email Deana (ddchiusano@yahoo.com) on Saturday, April 9th and encourage her to give herself the neupogen shot. If anyone has tips or tricks as to how they've handled this unpleasant task, please share those too.

As I sign off, enjoy the new photo of Deana taken at treatment today.  She felt that the photo I posted in December was terrible and made her look sick -- and as she was clear to emphasize -- she is not sick.

Actress Marlee Matlin's Father Diagnosed with MM

In a recent perusal of the CURE Magazine website, I came across the interview with actress Marlee Matlin regarding her father's MM diagnosis.  While I certainly regret her father has joined the ranks of the MM warriors, I am grateful to Marlee for helping to advance a cure.  Several years ago, actor Matt Damon's father was diagnosed with MM and the good people at The Multiple Myeloma Research Foundation (MMRF) have done an outstanding job working with Matt and adding him to the list of advocates. Noted television journalist and author Tom Brokaw has also been an important voice in recent years and I am thankful that he has bravely shared his MM journey.  I purchased "A Lucky Life Interrupted" the day it came out and devoured it in one sitting. I feel a pull to read it again, as I'm sure there were wonderful nuggets that I missed on the first read.  Each person handles a cancer diagnosis in the way right for him or her -- and the same can be said of that person's support system.  While I don't have the notoriety of Marlee Matlin, Matt Damon, or Tom Brokaw, I'll continue to do all I can to keep the conversation about MM going -- and I'll keep expressing my appreciation to the other courageous people adding their voices to the cause.  Together we can achieve extraordinary progress.

Multiple Myeloma Awareness Month

There is a saying that it is never too late to start -- and I hope that will apply in this instance.  I've had quite a lot going on and haven't posted at all during March, which is Multiple Myeloma Awareness Month.  The road was paved with the very best of intentions, as there are many terrific stories to be promoted.

For the moment, I encourage the promotion of the MM daily facts that have been created by The Multiple Myeloma Research Foundation.  These break down MM into information in a way that it is easily understood -- no medical degree required!

It has been inspiring to see many of the friends we've made on this journey post their messages of hope on various social media outlets this month.  I'll endeavor to share these in the coming weeks, because although March has been designated the awareness month, our need for progress does not end on April 1.

My sincere thanks to all who work tirelessly to advance a cure for this disease.

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.

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.

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?

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.

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.

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.

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.