Marriage, clinical trial and Huffington Post!

Well I have had a rather eventful few days!

1. Marriage!

William and I got married last week! We took five days and, just the two of us, explored this amazing country (and, oh, did the whole married thing). It was super fun. We are having our after-party and wedding photos with children and our closest of friends (which happens to include my former step daughter!) in the beautiful Utah canyons on October 3.



Here is my take on the significance of my marriage.

1. I am capable of being in a fabulous relationship. There is no doubt that William brings out the best in me. I am proud of our relationship; I am proud of the way I behave in this relationships. We have enormous respect for each other and I am so happy to show, by example, my children what a healthy relationship looks like. All those horrible things my ex said about me-- the I was a control freak and a horrible partner-- were simply untrue (I knew they were but sometimes we doubt our sanity when we live in a world of craziness, abuse, and chaos.). 
2. Many people who have horrible things happen to them, like getting a cancer diagnosis, give up and just survive. But I am here to tell you that it is possible to thrive even under tough circumstances. It is rarely easy but it is a choice we can make. When I was diagnosed with cancer, my entire life as I knew it fell apart. Literally vanished "just like that." The type of life I was living was supposed to end-- my life was pure HELL and I had to do something radically different. Cancer forced me to do just that. And so, literally, we can decide at ANY AGE to reverse course. We can make a totally different life, with new priorities and zest at any time, no matter what. It can be hard and frightening, but the rewards are infinite.
3. It is truly amazing to find a fabulous partner. When you have each other's backs, well-- there is nothing like it.

...Now the sad part. My 15 year old daughter was devastated that we did the marriage portion in private. She wanted to be part of it, she had a rough week, and I was not there for her. I was mostly out of cell phone range. I missed my daughters horribly those five days we were gone and my daughter needed me. And I needed her. That part was not good. I hope she forgives me and gets distracted in her new life. Or, perhaps, we will have a lovely commitment ceremony amidst the changing leaves on October 3. New season, new time of life. I like it.

2. Clinical Trial (or "I'm no guinea pig!")

Today I am sitting in clinic at Huntsman Cancer Institute for like eight hours! I have embarked on my first-ever clinical study. I am super excited about it, and hopeful. We patients MUST get into clinical trials. I am gaining access to a drug that only those of us in this trial can get into.

I am doing this one:

CLINICAL TRIAL: ACY-1215 in Combination With Pomalidomide and Low-dose Dex in Relapsed-and-Refractory Multiple Myeloma

What is the purpose of this trial?

Phase 1b: To evaluate the side effects and determine the best dose of ACY-1215 in combination with Pomalidomide and low-dose dexamethasone in patients with relapsed-and-refractory multiple myeloma. Phase 2: To determine the overall response rate of ACY-1215 in combination with Pomolidomide and low-dose dexamethasone in patients with relapsed-and-refractory multiple myeloma.

Wish me luck! And if you are the praying type, please include me (and all the other amazing cancer warriors out there).  Oh, and I will write more about this as time progresses.

3. I am featured in Huffington Post today!

I'm super excited! I posted a portion of my article a few days ago (which originally published on Divorced Moms) but in case you missed it, I'm reposting a part of it again right here.

12 Signs You're In An Unhealthy Relationship

Posted: 09/21/2015 11:55 am EDT Updated: 9 minutes ago

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By Lizzy Smilez for DivorcedMoms.com

There are pretty much universal signs that you are in an unhealthy relationship. If this sounds like yours, it is time to make some huge changes. Perhaps therapy is in order and your relationship is fixable. And in some cases, the only way to save yourself is by leaving it.

1. He is an addict.

If your partner is an addict, you cannot fix him. You must leave if you ever want peace or joy in your life. Some women develop an unhealthy love of the drama that life with an addict brings. Other women are co-dependent and "enjoy" repeated attempts to fix and care for their sick partner. Regardless, if you want a healthy relationship yet are with an addict, it is time get therapy, get strong and get out. There is no other option if you ever hope for joy, peace and love in your life.

Keep reading.... 

Blessings, my awesome readers!

Lizzy

I'm on Huffington Post! The 10 Best Things About Getting A Divorce

It's so excited when my articles get picked up! My latest from Divorced Moms was just picked up by Huffington Post and it's getting some interesting comments, same with on Facebook. Check it out!



The 10 Best Things About Getting Divorced
By Lizzy Smilez for DivorcedMoms.com

I don't know a single person who has gone through a divorce and thought it pleasurable. Divorce is tough, ugly, acrimonious and, well, it pretty much sucks. But if you look closely enough, I'll bet you can find many great things that emerged from your divorce. I know I can. And when I think about it and remind myself of the positives, "thriving my divorce" seems a more accurate description of my experience (sort of). Hey, at least I learned to laugh again and have fun!

So I picked my ten favorite things about my divorce. It actually wasn't that hard. Consider making your own list.

1. It ended
Winston Churchill said "If you're going through hell, keep going." This quote ran through my mind countless times during my marriage. In fact, I once posted it on my Facebook page. None of my friends really knew what I meant by it but I did. I knew I needed to keep moving or I would stay right there. It's been a tough battle to finalize the divorce but at least it's over. I no longer need to live in a constant battle zone.

2. The whole bed is MINE
When my husband and I split, I spent several nights sleeping nearly sidewise on the bed. I wanted the whole dang thing to myself and it felt fabulous. No more sharing. It was all mine mine MINE. It was symbolically powerful.

3. Purging the ugly stuff
I got to get rid of all the stuff I hated. Like the ugly framed print that was hanging in the loft. And the tacky Christmas ornaments? They'll never hang on my tree again. No more doing his laundry and putting away his work pants that were always too short and wrinkled because I refused to iron them anymore and he was too lazy to do it. His ugly brown leather couch? Gone. Everything I own now is clean, fresh and pretty. It doesn't look or smell like him. I love it.

4. No more compromising
All of a sudden, instead of fighting over everything from vacation plans to walking the dogs, it was done. Bed times, cleanliness, vacations, food in the fridge, noise levels... My home, my way. What a nice switch.

5. Peace
My marriage was extremely high conflict. I literally never knew from one moment to the next if a huge argument would erupt. When we separated, the realization that I no longer had to walk on eggshells was exhilarating. At times, I was almost giddy. It meant everything.

6. Living in truth
Oftentimes we hide the nature of our marriages from others. At least that was true for me. Most everyone my husband and I knew thought we were a happy couple. I hid our reality in shame and embarrassment. It was exhausting. When we split, it was a relief to live in truth. I no longer had to pretend to be something I wasn't. I decided to open my life and blog. Everything is now out there for anyone to read. This approach isn't for everyone but it works for me.

7. Emotional healing
After my marriage ended, the healing began and it was high time that it did. I'll never be completely healed. But I've survived it and I'm doing really well. Had I stayed married, I'd still be sustaining more wounds. Lots of retail therapy, self-help books, vacations, the love of family and friends and meditation helped. I had really bad days but it got better and better. The important thing was to be nice and forgiving of myself and to give it time. They say that time heals all wounds. It's true.

Keep reading...

I'm on Huffington Post! And let's cure Myeloma. MCRI is officially accepting proposals for high risk disease

Two very exciting things happened yesterday. (No, it wasn't the Super Bowl-- I am very sad that Seattle lost). The Huffington Post published another one of my articles! And... The Myeloma Crowd Research Initiative (MCRI), of which I am serving on the board, is accepting proposals for high risk disease. Let's cure myeloma! I really believe this is potentially a game-changer in the world of myeloma and how cures can be found.

Inside The Marriages Of Non-Monogamous Couples

Posted: 01/31/2015 1:17 pm EST Updated: 01/31/2015 1:59 pm EST       

                

By Lizzy Smilez for DivorcedMoms.com
Here are three real scenarios from couples I know well. And they have turned everything I thought about fidelity on its head.

 

1. The Open Marriage:

 

Kim and Troy have been married for 25 years and have two children. If one was an outsider looking in, they are the perfect couple. They are both beautiful people, have a beautiful home with a shiny pool in the back yard, two dogs and a cat, two perfect careers, two nice cars and a boat. They are fun to be with, always up for an adventure or a night out. They laugh and are affectionate with each other.

But Kim confided in me that they have been going through a rough patch for years. Troy has been fantasizing about being with other women and wanting her to be with other partners, men or women. They are both bored and have been considering divorce for a few years. Troy cheated on Kim throughout their four year relationship prior to marriage and to this day, she thinks that maybe Troy has cheated on her after their wedding, too. Every time he texts or picks up a call, she wonders.

Finally, at Troy's encouragement, she slept with a friend of Troy's. They filmed it and texted it to Troy. And instead of it destroying their trust and relationship, it has revitalized it. She says they have sex all the time now, they are open with each other in ways they never have been, and she actually trusts Troy because she feels, at last, he's honest. Brutally honest, not always easy to hear. But at last, she doesn't wonder anymore.

 

I asked Kim if she felt guilty about having the one-time sexual tryst with Troy's pal. No, she said, because she did it for Troy and the outcome has been good for them. She was on the verge of a divorce and, time will tell if infidelity has perhaps saved their marriage. I asked if she would do it again. Probably not.

 

What will she do if Troy has an affair, or many affairs? She's not sure she cares that much, as long as it's "just sex." And what if it isn't? What if one of those "just sex" women becomes something more? Kim says that she and Troy are strong, they have been together so long that no woman will end their marriage. She's that sure of it. And she, the jealous type, is all of a sudden, more sure of herself than ever, and not feeling so jealous anymore. She feels... at peace.

 

Kim has decided that she will sacrifice her monogamous marriage in order to have honesty, transparency and openness in their relationship. Honesty at almost any cost. The rules of their marriage have now changed. Will this lead to long-term happiness? Time will tell.

 

2. The Known Cheater (And Looking The Other Way):

When Lori met Sam, he was already married. She helped break up his marriage and it was an ugly split. Sam's wife fought hard to keep her guy but, ultimately, she failed. A year after their divorce was final, Lori got her wish -- Sam married her amidst great fanfare and a huge wedding. It's been 15 years and they have three sons. As an outsider looking in, they are also the perfect couple. A beautiful home with a pool, two great careers, beautiful boys who are in every sport one can imagine, and one awesome Golden Retriever.

 

Sam and Lori go to all their boys' games and activities and they have all the beautiful photos on Facebook to prove it. They are one happy family. Except Sam cheats on Lori all the time. Whether it's with his co-worker, the neighbor, his ex wife, or the daughter of a family friend. And Lori knows it. Most of the time, she pretends it's not happening. But a few times, it's been so "in her face" that she's had no choice but to confront it.

 

Keep reading

 

PRESS RELEASE: New Crowdfunding Myeloma Initiative Begins With Call For Letters Of Intent For High-Risk Multiple Myeloma Solutions

 

SALT LAKE CITY: Jan. 30, 2015 — The Myeloma Crowd Research Initiative (MCRI) is calling for research proposals for high-risk multiple myeloma, a rare blood cancer from February 1-28, 2015 on the Myeloma Crowd website at www.myelomacrowd.org/mcri.

 

The MCRI is a new way of fundraising for myeloma research, combining the skill and knowledge of leading myeloma specialists with educated “epatients” to together select and fund promising research projects in myeloma. This is the first time a united group of patient activists have helped steer the direction of myeloma research.

 

The MCRI has selected high-risk myeloma including genetic features (del 17p13, 4;14, 14;16 and 14;20) and aggressive features in relapsed/refractory myeloma patients as its main area for research funding. While life expectancy has doubled in the past ten years with the introduction of new myeloma drugs, outcomes for patients with high-risk myeloma is still dismal. As myeloma progresses, it becomes more aggressive, many times acquiring new high-risk features as it matures.

Multiple myeloma expert Dr. Rafael Fonseca, MD of the Mayo Clinic in Scottsdale, Arizona, said, “The study of high-risk myeloma should be one of the top priorities for myeloma researchers. New and radically different treatment approaches are needed.”

 

Hitting the hardest cases of myeloma with new ideas is a bold, top-down approach that will provide a trickle-down effect to standard or low-risk patients that continue to live with this incurable cancer. “What we have learned is that treatments that work well in high-risk patients tend to work even better in standard-risk patients,” said Dr. Guido Tricot, MD, PhD, University of Iowa.

 

Letters of Intent will be accepted on the www.myelomacrowd.org/mcri website from February 1-28, 2015. Proposals from selected applicants will be reviewed by both a Scientific Advisory Board and Patient Advisory Board who will select final projects for crowdfunding campaigns.

 

Due to the nature and incidence of high-risk myeloma, collaborative proposals between facilities and investigators are welcome.

 

MCRI Scientific Advisory Board: Dr. Ola Landgren, MD, PhD (MSKCC), Dr. Guido Tricot, MD, PhD (University of Iowa), Dr. Irene Ghobrial, MD, PhD (Dana Farber Cancer Institute), Dr. Rafael Fonseca, MD (Mayo Clinic Scottsdale), Dr. Noopur Raje, MD, PhD (Massachusetts General Cancer Center) and Dr. Robert Orlowski, MD, PhD (MD Anderson Cancer Center).

 

MCRI Patient Advisory Board: Pat Killingsworth (multiplemyelomablog.com), Gary Petersen (myelomasurvival.com), Jack Aiello (NCI steering committee member, well-known myeloma patient advocate), Jenny Ahlstrom (www.myelomacrowd.org, www.mpatient.org) and Cynthia Chmielewski (www.twitter.com/MyelomaTeacher).

 

MCRI Communications Advisory Board: Dr. Mike Thompson, MD, PhD (ASCO Social Media Work Group, co-founder #mmsm Twitter group) and Myeloma Crowd patient advocate Lizzy Smith (www.lizzysmilez.blogspot.com).

 

About Myeloma Crowd/CrowdCare FoundationThe Myeloma Crowd is a division of the CrowdCare Foundation, a patient-driven 501(c)3 non-profit organization. The Myeloma Crowd provides patient education, advocacy and now research funding for multiple myeloma. Find us on www.myelomacrowd.org.

 

Contact:Jenny Ahlstrom
Myeloma Crowd
801.949.1034
jenny@crowdcare.org

My second article on Huffington Post!

Well color me happy ecstatic! My second article was published today in The Huffington Post! Sunday edition, no less! I am so flattered, touched, excited...! Here's the link:

Why I Left My Husband After Getting Diagnosed With Cancer

Posted: 03/02/2014 2:35 pm EST Updated: 03/02/2014 2:59 pm EST

Print Article

Vstock via Getty Images

                            

By Lizzy Smith for DivorcedMoms.com

I am a cancer survivor. I was diagnosed with multiple myeloma in January 2012 and immediately upon diagnosis, I left my alcoholic husband and moved two states away to enter treatment. The life that I once knew (career, family, home, dogs, San Diego) was over in an instant.
Prior to diagnosis, I realize how my priorities were all wrong. I spent the majority of my time on things that weren’t important at all. But it’s amazing how radically that changed once I knew I was sick and fighting for my life.

keep reading...

Lizzy in the news!

Interview: NBC News Salt Lake City

Today, Jenny and I were interviewed on NBC News at Noon in Salt Lake City. We discussed the www.myelomacrowd.org site and navigating myeloma treatment. It's always a pleasure to help promote this web site and help other myeloma survivors navigate this disease. Check it out here! www.ksl.com/?sid=28870218&nid=1194

Article: Huffington Post!

The Huffington Post carried my first article today! I'm so excited. What a great way to promote something I am passionate about: helping others survive divorce and, especially, how to survive an abusive husband, escape him, and rebuild life after. I've already received several private emails from those who found my blog from Huffington Post - hooray! Click here to read. But here's a teaser:

The 10 Best Things About Divorce

Posted: 02/27/2014 11:45 am EST Updated: 02/27/2014 11:59 am EST            

Print Article

Daly and Newton via Getty Images

                            

By Lizzy Smith for DivorcedMoms.com

 

I don’t know a single person who has gone through a divorce and thought it pleasurable. Divorce is tough, ugly, and acrimonious -- it pretty much sucks. But if you look closely enough, I’ll bet you can find many great things that emerged from your divorce. I know I can. And when I think about it and remind myself of the positives, thriving from my divorce seems a more accurate description of my experience (sort of). Hey, at least I learned to laugh again and have fun! Keep reading...

 

Radio Program: Cure Panel Talk Radio

Yesterday I participated in a fantastic radio show! Dr Rajkumar talked about many of the developments in the Myeloma field, including treatments, outcomes, and new drugs in the pipeline. You can hear a recap by clicking here or by pasting this in your browser: http://www.curepanel.carefeed.net/event/rsvp/19/.  

 

 

Two notable items I'd like to recap are:

 

1. Almost all the time, patients are treated for myeloma differently depending on who treats them. There are so many different ways to treat those with myeloma and many different approaches. There are approaches that are highly aggressive and more curative in their attempt versus maintaining the disease. And there are all these factors that help determine those decisions. But almost without fail, it depends where a patient is seen. It should be the other way around. Patients should, in a "perfect" world, know what their treatment options are and then determine how they would like to proceed. The challenge is that few patients know anything about their disease when diagnosed. And, once diagnosed, we they are overwhelmed and trust their oncologist. That was true for me, too. I believe the www.myelomacrowd.org site helps educate newly diagnosed patients in a comprehensive, easy-to-understand way. Maybe armed with better knowledge, those decisions won't be quite so difficult.

 

2. For those who are done with transplant and received a total response or a very good partial response, keeping them on maintenance therapy indefinitely is an approach some are taking. At Mayo, they keep patients on that maintenance therapy for no more than "about" two years because secondary cancers become more prevalent.

 

All interesting information!

NBC News Utah, Cure Panel Talk Radio segment, and Huffington Post

In just a few days, it'll be Multiple Myeloma Awareness Month (March). What better way to recognize it than helping educate the public on this disease. To that end, here are a few ways we're doing that:

NBC News Utah (Thurs, Feb 27)
I'm excited to announce that Jenny and I will be on NBC News Utah 5.0 at noon tomorrow, Thursday, Feb 26! We will be discussing the www.myelomacrowd.org site, myeloma, and more. If you're in Utah, catch us live or watch here for a link to the interview.

Cure Panel Talk Radio: Myeloma Control vs Cure (Weds, Feb 26)
Later today, I will be one of the guest panelists on Cure Panel Talk Radio. Here's the summary:

Dr. Vincent Rajkumar of Mayo Clinic who will discuss Myeloma Control vs. Cure with our panel of patient experts. Dr. S. Vincent Rajkumar is a professor of medicine at the Mayo Clinic in Rochester, Minnesota. His research focuses on clinical, epidemiological, and laboratory research for myeloma and related disorders.

Panelists: Gary Petersen, Pat Killingsworth, Nick van Dyk, Cynthia Chmielewski, Lizzy Smith

Register here: http://curepanel.carefeed.net/event/rsvp/19/ (or) mail Priya@trialx.com

 

...And on a side note:

 

Huffington Post

I also just found out that Huffington Post will be featuring two of my articles on divorce in the next week! I'll post links to the articles when they're ready.

Happy Hump Day!