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.