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Big Sis In Burgundy: My Sister Has What?!?!

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Published: May 30, 2011 9:18 am

There are moments in life impossible to predict and, therefore, difficult to plan for.  One of those moments happened to me in the late afternoon about a month ago on April 27.  Learning that my sister Deana, four years my junior, had an advanced case of multiple myeloma was shocking to say the least.  It was one of the most sobering moments of my life.  Despite two days of hoping doctors would be wrong, the tests confirmed it.  So now, we as a family gear up for the greatest battle of our lives – Beating the H*ll Outta Multiple Myeloma.

Deana is the middle child, second of the DAD girls (there are no sons in our family and each of our initials are DAD), the artistic one, athletic too, a great student, now licensed architect, and mother of three: Andrew (12), Clare (8), and Gregory (2).

Deana, the sister I was thrilled to have, after months of parent-suggested praying that God would bring me a sister or brother.  (I wasn’t asking on my own, and the arrival was inevitable.)

How is it that my sister has this incurable cancer?

Have we not been tested enough with the loss of our beloved father to heart disease, 16 years ago, at age 51?

Of course, challenges like these are not deserved, and spending energy bemoaning that fact takes precious energy away from the fight.  But I did need those few moments to lament the unfairness of it all and to ask – WHY HER?

After my March 2010 Pittsburgh Marathon visit to Cranberry Township, Pennsylvania, where she and our other sister, Darrie, live with their families, Deana was impressed with the calorie burn I experienced running 13.1 miles.  She had recently decided to focus on her health, working to get into shape as 40 approached, and to drop the remaining weight from baby #3.

She started walking and then added some alternating jogging, which she fondly calls “wogging.” In the early fall, she did a few 5Ks, and she registered for the Charlotte Thunder Road Half Marathon, which we would do together on December 11, the day our father would have turned 67 if he were alive.  (She also signed up for the 2011 Pittsburgh Half Marathon, before we even stepped foot in Charlotte!)

Deana had already started to have a few head colds and other typical late fall/early winter “crud” busy moms with children in school and day care can get.  On race day, we took off jogging, but had to walk in fairly short order.  At one point, Deana told me her chest was hurting, but she attributed it to the chilly morning.  She sent me on ahead at mile 6 and told me she was going to drop out.  (It’s another story for another time, but she ended up walking the 13 miles anyway!)

From that point, Deana spent the winter and early spring with frequent colds, sore throat, and the like.  Someone in the house was generally under the weather (again, to be expected with 3 little ones) so there were frequent trips to the doctor.  When Deana was seen, the doctor would diagnose bronchitis or something on that order. The chest pain persisted, and, at some point, a chest x ray was taken, which came back clear.

Deana visited me in Georgia the first weekend in April.  I was running the Clemson Easter Bunny Half Marathon, and she planned to do the 5K because she didn’t feel well enough to attempt 13.1 miles.

When I got her at the Atlanta airport, I thought she looked even thinner than she did at Christmas.  There was momentary concern – I knew she wasn’t exercising, and I couldn’t imagine her diet would have changed that dramatically.  So how did she get this thin?

The morning of the 5K, she said her chest felt tight, so she walked the race. The night before, she mentioned it felt like she had pulled something in her chest. (Now we know, these were signs of the wretched multiple myeloma invasion!)

Given that she was not feeling any better and the chest-tightening feeling was growing more pronounced, she went back to the doctor on April 21, and blood was (finally!) drawn.   Although critical results, reporting a hemoglobin level of 6, were received by the doctor at 3 p.m. that day, the office did not call her until shortly before 10 a.m. on the next day, informing her she needed to get to the local hospital for a blood transfusion.

Deana needed three units, but it was Good Friday and getting late, so she was sent home after two units, with an appointment to return Monday.  She continued to feel poorly over the weekend, calling the doctor on Saturday to little satisfaction.  On Easter Sunday evening, she called a gastroenterologist friend and described the situation.  His recommendation: go to the emergency room.  This proved to be excellent advice.

The low hemoglobin and her complaint of chest pains won her admission to the hospital, where things began moving quickly.  Tests were run, and within three days, we knew multiple myeloma was our adversary.

Deana and I are both proud graduates of Texas A&M University, so we adopted as our battle cry a version of the famous Aggie yell – Beat the H*ll Outta Multiple Myeloma.

Deana, her husband Chris, our youngest sister Darrie, and I met with the oncologist that Friday.  It had been my hope to get her to the Myeloma Institute for Research and Therapy in Little Rock, Arkansas, for an appointment on May 3.  However, her insurance would not allow her to go out of network, and we didn’t have the luxury of time to engage in a protracted battle with the insurance company.   She needed to start treatment within a week. So, we returned to UPMC in Pittsburgh on May 2, and she had her first Velcade (bortezomib) treatment that afternoon.

In the last four weeks, my life has changed dramatically:

My sister has cancer.

I’m wearing a burgundy “No one FIGHTS alone!” bracelet regardless of whether or not it matches my outfit.

An inspire ring necklace with “Faith, Hope, Love” and burgundy ribbons is on my neck every day.

I’ve started reading as much about multiple myeloma as I am able to.

I’ve contributed to the Multiple Myeloma Research Foundation.

And now, I will write this column, grateful for the opportunity to share this journey with other siblings who find themselves in this unfortunate position.

I am frustrated that despite my willingness to devote incredible energy to this challenge, I cannot “fix” this.

But I am choosing HOPE.

HOPE that we will get Deana through a stem cell transplant and into remission, and …

HOPE that we will find a cure for multiple myeloma in our lifetime.

If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .

Photo of Deborah Dietzler (center), biweekly columnist at The Myeloma Beacon, and her sisters Deana (left) and Darrie (right).
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8 Comments »

  • Debi said:

    Hi Deborah,
    My name is Deborah also, (although I go by Debi), and I too, am the oldest of 3 sisters. It is my husband, though, that was diagnosed with stage III MM, and was in renal failure when brought in to the ER. After a week of testing, and every specialist in the hospital having input, they confirmed the diagnosis, and our local oncologist/hematologist started my husband on a 3 drug regimen of Velcade/ Doxil / Dexamethasone.
    The treatments were hard to say the least, but as his Myeloma load went down from over 90% of his bone marrow, to under 30%, we explored options for stem cell transplant. We knew that we wanted to go to UAMS in Little Rock, for the complete gene array analysis, and transplants. Like you, being out of state (we are in Calif.) had a go round with our insurance, but as long as we operated under their guidelines….(they wanted us to have at least one in-state consult before going back to Ark.), we got them to cover the expenses. We also pointed out to them, that at the Myeloma Institute for Research and Therapy, they do more stem cell transplants for Myeloma, (over 9,000 to date) and have probably the highest long term survival rates / “cure” rates of any facility in the world. Also, as they predominately do the transplants on an outpatient basis, they (the insurance co.) would save alot of $$$$ over the transplants done typically in hospital in Calif.
    Long story short,…my husband was given 2 years at diagnosis, and after 4 rounds of induction chemo, 2 transplants,and consolidation chemo, my husband has been in remission now for almost a year, and is celebrating 2 years post diagnosis, this Aug. His kidney function is normal, his bones are mending, and his quality of life is returning. He is on a maintenance chemo program, which is tolerable, and we make trips to Little Rock every 4 months, for testing. He receives all of his maintenance treatments at our local hospital in Calif.
    We highly recommend the treatment protocols at the Myeloma Institute, and if your Onc. is okay with it, you can have your local Onc. work with the MIRT, in tandem, to treat your sister, and give her the best outcome.
    Our prayers are with you, your sister, and families during this tough time. Your sis is very lucky to have an advocate, and researcher, like yourself. Too many patients feel like they are “along for the ride”, and don’t know enough about the process involved, and what will be in their best interest. Deana has alot to live for, and is blessed to have the support of a loving family behind her. Keep the faith, trust in God, and believe that miracles can happen!
    Blessings,
    Debi

  • Gary said:

    Hi Deborah: Thanks for sharing and welcome to the world of MM. You will soon find why they call it the “practice” of medicine. I have a few suggestions for newbies like you and your family. 1)Read “The Emperor of all Maladies” by Siddartha Mukherjee to put cancer and its treatment in perspective 2)Get a second opinion. Like Deb I really recommend University of Arkansas. If your insurance says no go mortgage the farm. There is nothing more important than to start down the right road ,and 3)It is becoming clear that everyone’s MM is different and the differences are becoming defined. Absolutely insist that your sister’s treatment be personalized. Ask about each medication recommended and the amount and frequency.

    Your sister has one incredible advantage over the majority of us MM patients… she is young. Her body will endure the insults thrown at her. With your support and the Lord she will make it thorough. God bless you all.Gary

  • Pat Killingsworth said:

    Deborah-
    Good luck to you and your sister. It will take a few months to sink-in–but sounds like you are well on your way. How about her?

    Considering, I think the future looks bright. It is very possible she will live a long, near normal life–even without a cure- Pat

  • Tricia said:

    This is a great place to get and share information. High hopes for your sister.

  • Pat said:

    Hi Deborah,

    Having two supportive sisters gives Deana a huge advantage through the maze of myeloma. I look forward to reading more from you.

    Pat

  • Gilbert alderson said:

    Dear Deborah,
    Thank you for sharing this with us.
    I was diagnosed in December ’05 w/ stage 3 mm. I was older than Deana at 55yrs,but like her in excellent shape (runner, martial arts etc, “healthy diet”)
    Prior to diagnosis, my symptoms were almost exactly like those you describe your sister having.
    I’ve had an ASCT in June ’06 w/ complete remission for 4 years; a second ASCT in November 2010 presently in complete remission.
    Although I am not physically the same as I was prior to MM, please believe me when I tell you that fortunately I feel good, remain physically active, and continue to hold a full-time job.
    The support of family and friends has been important to me. Certainly, it is and will remain so for your sister.
    My best wishes to you and your family.
    Also, thank you for supporting the MMRF.

    Gil Alderson
    Desoto, MO

  • Janice Cline said:

    Dear Deborah,

    Thank you for your willingness to participate with the Myeloma Beacon, by writing your column “Big Sis in Burgundy”. Your column was one that I sent to my siblings who all live in the same southern town, while I live in NY state. They support me, but struggle to understand the medical issues and the complexity of this disease. I believe you have hit on an issue that many of us face–the siblings who want to support their “sick” relative, but have a struggle to find the best way from a distance.

    As I enjoy and benefit from all the columns in the Myeloma Beacon, yours has been a great addition.

    Thank you again.

    Janice

  • Linda Kaufman said:

    Hi Deborah, retired teaching in 2003, 7 months later MGUS (pre myeloma). DX in 2007 after putting off BMB because afraid of the big needle for a year. Treated with thalidomide and dex then ASCT at Hillman Cancer Center in Pittsburgh. I live in the South Hills. I was an outpatient. Nov 30 will be my 4th birthday of my release from the SCT program. That’s my birthday as I was told I had a 40% chance of living 4 years with my Very Good Partial Response. I had 70% plasma in my bone marrow at diagnosis. I’m very glad to be anywhere and am living in the now. Best to your sister. Linda