(sigh) It's back to a stem cell transplant for me

A very happy day! This guy means everything to me. I "get" to fight myeloma, this time with a very kind, amazing husband by my side.

Well I have had a great run with my tandem stem cell transplants in 2012. I relapsed in February 2014 and got on a regiment of Kyprolis-Dex-Revlimid and got back into remission for six months. I got on a clinical trial but was kicked off of it because my total white blood cell counts were too low. And my doctors and I have determined that another SCT is in order, we have put it off long enough. This will reduce my tumor burden significantly, if not put it back into remission entirely. After I have recovered, I can likely get into a clinical trial at NIH that is using exciting Car t cell therapy to keep me in remission potentially forever.

Now that this decisions is made, I am relieved and, dare I say, excited. I'm trying to get permission from my doctor to go skydiving on Sunday to welcome in my new stage of treatment. Something a bit over the top. After I have fully recovered, it is time for a crazy amazing William-Liz trip. Not sure yet but just thinking about it is fun.

When this decision was made and I told William, he said "This is life. I'm all in. I love you and I am so sorry you have to go through this and I am here for you completely," and we both cried. What a huge contrast when I told my ex husband, Bob the Great (Alcoholic): "You are a liar, lazy, thief, drama queen who doesn't want to work and wants my money!" (spit in face) I am so blessed. And, of course, what can I say about my fearlesss, supportive parents? No one fights disease alone, and that is so true in my case. I have an amazing support system and I will be and do just fine.

My medical insurance requires that I be hospitalized during days 1-5, which begins Monday when I get a cocktail of chemo drugs for four consecutive days. I did this all out-patient during my tandem transplants in 2012 but new insurance, new rules. If one must be stuck in a cancer hospital, Huntsman is not a bad option. The views are spectacular. I feel like I'm floating on an airplane. I have blue-ray and room service with delicious food options, I wear my own clothes and, because I remember this part like it was yesterday, I felt pretty good. So I'll be writing, binge watching TV, and intently walking the halls to get exercise. Weather permitting, I'll sit outside. And I'll read. 

SCTs are awful but we make the best of them. What other choice do we have?

I'll say it again... Myeloma is a journey. I'll win, but there are insane numbers of bumps and curves in the road. This one nearly takes my tire off. And life goes on. 

My Weekend Spent With Polygamists in Hildale/Colorado City

My Weekend With The Polygamists & (Hopefully) Helping A Few Leave

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by Lizzy Smith for Divorced Moms

October 28, 2015

This past weekend I had an eye-opening and life-changing experience. My best friend, Julie, and I joined about another 100+ volunteers and we went to polygamy central- the twin cities of Hildale (Utah) and Colorado City (Arizona). The Fundamentalist Mormon church has, among other places, set up stakes there many years ago. And, generally, the residents are fearful of strangers, live a very closed-off life from general society, and live under strict laws of obedience to their “prophet” Warren Jeffs who is currently serving a 20-year prison sentence for child sexual assault.

Most women, until the recent edict stopping all marriages within the sect, were married off at very young ages, oftentimes to close or slightly distant family members. Many of these women have no idea that they have any legal rights or, if they do, how they would even access those rights. If one seeks to leave the FLDS church, they are turned away with nary the clothes on their backs. They lose their children, their spouse, their friends and extended family members, and any property they may have. Now labeled “apostate” FLDS members are forbidden any contact, including a “hello” on a sidewalk from anyone in the sect. That includes mothers to their own children. The horrors happening in this "religion" are unimaginable—child rape, sexual assault, rape, you name it.

Julie, me and the other volunteers were there for a dual purpose. The first was to help clean and refurbish a safe house for those hoping, considering, or having left the sect. There, they find safety, meals, beds, clothing, and support services. It is hard to describe the dark, evil presence of the home we were working on. It had previously been a polygamous home. There were some 22 bedrooms and 19 bathrooms (you try keeping that clean!). There was no beauty or peace in this gargantuan home. It was one hallway after the next of bedrooms and bathrooms. If a serial murder needed a place to hide his victims, this would be perfect because I hardly believe anyone would ever see or hear from them again, locked in one of the out-of-the way bedrooms, isolated, cavernous bedrooms. As we walked from room to room, I wanted to know how many children had been raped in this one, or a woman assaulted in that one, or a desperate young child bride wondering when her old husband would be there to rape her in that other bedroom. Many of them smelled of musk, urine, and, what, was that maybe semen?

But as we painted, cleaned, re-roofed the home, sorted through mounds of donated clothes and placed them on shelves, I started to sense something else. Was it hope? (It was certainly smelling better!) It certainly was a joyous day as we met some of the most amazing women and men who truly inspired me. Their dedication to those in horrific situations was beyond notable. I wanted to do more, sink my teeth into how anyone could find themselves in a life of polygamy and stay there. I wanted to be like these activists and volunteers. Me, too, me too. Because, really, but for the Grace of God, that could easily have been me. After all, I come from Mormon pioneer stalk. My ancestors walked across the planes to the Promised Land of Utah. They were faithful and obedient (none of this rubbed off on me, I am the most rebellious soul ever!) and several of my relatives even practiced polygamy. That’s right, I am partly the product of polygamy. (As I discuss its horrors and pure evilness with my dad, he reminds me of this, as if this is something to be proud of, as if being a child of polygamy somehow makes the practice of it more palatable. To that I say that anyone who is the product of rape or slavery does not make those institutions or acts ok. They are vile, as is polygamy.) When the Mormon church chose to abandon polygamy in order to gain statehood, the FLDS stayed true to the faith. If my ancestors had made that choice, perhaps I’d be living in polygamy, one of many wives and mother to far too many children, living a life of deep sadness and desperation. Do I owe it to these women to help? To pitch in? Yes. So in addition to my two greatest life’s passions (divorce/parenting/healing and cancer), I add polygamy rescue.

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PLEASE sign up for the MCRI 12 Day Challenge! YES, I am BEGGING. Let's cure myeloma now!!!

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BY JENNY A ON OCTOBER 20, 2015MYELOMA CROWD RESEARCH INITIATIVE, MYELOMA NEWS

We have been given a unique opportunity to get together as patients, family, friends and caregivers to raise research dollars and awareness for multiple myeloma through our social media actions.

The 12-Day MCRI Challenge will help each of us take specific actions that will directly impact our own outcome or the outcome of someone we love with multiple myeloma. Through a united team effort, theMCRI 12-Day Challenge will allows us to provide awareness, education, and important research dollars to accelerate a cure.

As the second phase of our Myeloma Crowd Research Initiative fundraising campaign, we’re announcing our inaugural “Can’t Wait for a Cure MCRI 12-Day Challenge,” a campaign that lets YOU take action to help myeloma patients. Takeda Oncology and Signal Genetics have agreed to pay $1 for every social media impression that is associated with one of our challenges. Our goal is to reach over 50,000 impressions in 12 days. We have a short window to take advantage of this opportunity and 100% of this money goes to sponsor the two MCRI myeloma research projects.

Here’s How it Works

1. Register

Starting today, you can register to join the Myeloma Crowd MCRI 12-Day Challenge. We are scheduled to start the challenges on Monday, October 26th. We’ll keep you up-to-date on the daily challenge, track your social media shares and tell you who won the prize of the day. Our goal is to have thousands of people taking action – patients, caregivers, siblings, grandkids, long-lost friends and anyone who knows and loves a myeloma patient!

Register

2. Do the Daily Challenge for 12 Days

Beginning on Monday, October 26th, we will post/email a daily challenge for 12 consecutive days. The challenges are simple: read an article and share it on social media, perform a simple act of service, or learn about a key topic that could change the course of a patient’s care. Do the challenge.

3. Share the Challenge on Social Media

After you’ve finished your daily challenge, please share the challenge link on your social media with the hashtags #discovermyeloma, #mmgenetics and #curemyeloma. Our goal is to get over 50,000 impressions by the end of the 12 days. Don’t worry – once you register we’ll send you a daily email with simple examples you can copy and paste into your social media to share once you’ve completed the challenge.

4. Help Earn Funds for Myeloma Research Through Your Actions

For each action you take, our generous sponsors, Takeda Oncology and Signal Genetics will donate $1 to the Myeloma Crowd Research Initiative. Your small and simple actions will not only educate, but will also bring tens of thousands of dollars to myeloma research!

Our host sponsor Takeda Oncology is donating tens of thousands of dollars to make these challenges meaningful for patients and research. They provide amazing support of myeloma awareness and are a world class supporter of patients and patient advocacy!

Signal Genetics is a participating sponsor and in addition to their donation amount has has granted a FREE MyPRS test ($2900 value) as one of the prizes. Fantastic!

Thanks also to iHeart Media/94.1 KODJ and Dr. Guido Tricot and Dr. Robert Orlowski for their generous donations of tickets and time for our prize locker.

5. Earn Prizes

For each challenge, we will randomly select one winner from the participants of that day’s challenge. You must be registered either through the registration button above or the Time Machine phone app to be included in the raffle for this daily prize. The winner will be announced on the day following the challenge. Additional prizes are also available with the use of the app described below.

If You’re Tech-Savvy

If you, your kids or grandkids are tech-savvy, you can download an app called Time Machine on your smartphone to help you track your activity. Don’t do any of the challenges just yet! We are going to start them together on October 26th maximum impact. Here’s how to use the app:

1. Download the Time Machine App on your phone
   GET TIME MACHINE ON IOSGET TIME MACHINE ON GOOGLE PLAY
2. Find our campaign called “Can’t Wait for a Cure, Myeloma Crowd”
3. Login with Facebook or Twitter. This is how you will share the actions on social media
4. Click on “Do This”
5. When we post the challenge, do it in the app. The app will walk you through the steps to share your action on social media.

Register Today

Join Us and Take Action Today

Please join our united voice to power up our impact and improve outcomes for myeloma patients everywhere. Please share this article with your friends and family and invite them to register and do something meaningful for patients and their families.

For questions about the Time Machine app or the campaign, email us at info@crowdcare.org

Why Do Some (Mormon) Adults Feel The Need To Narc on Each Other?

So I had an interesting exchange between some Mormon women who are in the single's dating scene (which, honestly, is a freak show of indescribable proportions). One woman shared this story...

"Suzie" met a guy on an on-online Mormon dating web site. Ok, forget anonymity, she met him on LDS Planet. They communicated for a few months and then he drives some five hours to visit her in Las Vegas. She makes him dinner in her home. Afterwards, he announces he has no hotel and so she allows him to sleep on her couch. I just have to repeat this: She allows a man she has never met before and who, really, she doesn't know more than some guy named Joe from Iceland, sleep on her couch and she lives alone. My head hurts just typing this. Suzie goes to bed. At some time in the middle of the night, money-less dream-guy who drove five hours to visit her gets in bed with her and tries to get a little naughty. Nice Mormon woman that she is, she is horrified, insulted and revolted. She tells him to get out. He does, but not until he calls her a prude and all kinds of other names.

Suzie is ranting. What is wrong with these priesthood holders? She screams out. All kinds of women go to her defense. Seriously, these men who hold the priesthood and go to the temple and are good Mormon men should know better, treat women with respect, and all of that. Blah blah blah. I have to remind them that people are people regardless of religious affiliation! Are they for real?

One woman tells Suzie that next time a guy comes to visit, have some married friends allow him to stay in their home. I had to respond to that one. Seriously, WTF. "Do NOT ask your friends to allow some guy you don't know at all to camp out in their home! The safety aspects alone ought to be your first clue that this is a REALLY bad idea."

Duh. Seriously, how old are these women? They are 12-year olds stuffed into adult bodies, that's who they are.

Another says that she needs to contact this guy's bishop and tell on him. Call the guy's Relief Society president, too.

Another WTF. Am I living on Mars or are these women dumber than a box of rocks. I responded to this one, too: "Um, why are you tattling on an adult to another adult? I don't allow my children to narc on each other. They guy did nothing illegal. Granted, he's a major ass but you invited him! Besides, what, exactly is an overworked Bishop going to do anyway? Take his car keys away for a week? Cut off his phone for the weekend?"

Oh, the shaming I got after that comment. "The bishop needs to know! These men need to be called out for their behavior! You think you know everything, Lizzy!" (I didn't say this but, in comparison to this group, well, unfortunately I kind of do.)

I responded with this: "Church shouldn't be a place of shaming and punishing. Church is about learning of Jesus, repentance, developing a relationship with God-- you get the gist. Maybe the guy has a lot of work left to be done, but it's not for a Bishop to shame or punish him for behavior that isn't illegal. And, if he wants to be an ass, it is his prerogative."

And then I had to offer up some Lizzy dating advice, even though it was not solicited (or, dare I say, appreciated). But, really, total stupidity cannot be left ignored because I have a Big Fat Mouth and lots to say. And I have not been given the ability to zip it. I wrote this:

Dating Ladies, Let's be happy that loverboy didn't slit Suzie's throat, rape her, or (as far as we know) steal her identity and drain all her bank accounts. Next, know that she put herself in a highly dangerous situation. He should not have known where she lived. She never should have allowed him in her home. She definitely should not have allowed him a sleepover. He should not know where she works or where her children live. He should, at this point, know almost nothing about her minus her name. They should have met in a (very) public place for dinner. She should have told MANY friends exactly where she was going, when she was expected home, and who she was meeting up with. If the guy did anything illegal, she needs to call the authorities, not a Bishop or Relief Society president. Otherwise, as adults, we don't go tattle telling hoping someone else will fix the un-fixable."

I got this back: "He is Mormon. He is an active priesthood holder. What happened to trust?"

Me: "Mormon women have a reputation for being extremely gullible. STOP it. You have no idea who this guy is. Do a background check. Check social media to make sure he is who he says he is (and isn't married). Verify. Trust develops over a period of time, you don't automatically dole it out. Keep yourself safe. And, when you make huge mistakes, learn from them. You are an adult."

Call me a bitch. Call me whatever you want. But, seriously, this whole Mormon mindset among adults of "when life goes wrong, tattle to the Bishop" is so completely absurd that my head wants to explode. Yesterday, my 15-year old comes to me and said, "Siena called me a bitch." Me: "What exactly would you like me to do about it?" Morgan: "Tell her to stop." Me: "You have a voice. You tell her to stop." Do we parents really not teach our children to start handling their own problems? If my child is bleeding or her sister beats the shit out of her, I want to know. If something dangerous or abusive is going on, I'm all ears. Short of that, deal with it, because that is part of becoming an adult. A skill that far too many Mormon women have yet to develop. Sad. Dangerous, actually.

The road to Hell: What it's like living with an addict

My children are out of school for five days for Fall Break. So far, it's been awesome. But it's also been super busy. So I'll write more about that, perhaps tomorrow. William has been out of town and I'm on my way to the airport to pick him up shortly. Happy weekend!

What It's Like Living With An Addict: The Road to Hell
by Lizzy Smith for Divorced Moms                    

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October 17, 2015

A close friend of mine, “Kate”, is on a trip to visit her sister, “Alice”, perhaps the last time she will see her alive. Though Alice is just 60-years old, she is an alcoholic and her liver is failing. She actually quit drinking a decade prior but the damage was done. Also permanently damaged was the relationship she had with her husband (after 15 years of hell, he left), children whom she has not seen in years, and siblings. Most of the family had to “cut her off” because they were tired of the endless excuses, theft, lies, and more.

As I’ve written numerous times, if you are married to an addict, or if you are dating one, you need to seriously consider what they hell you are doing to yourself and your children. Because you likely will never heal him but there is probably time to save yourself and children from the pain and trauma you will experience for decades and, likely, forever. I tell my story of life with an alcoholic frequently on this blog but what is the impact of addiction to the countless other families who struggle with these terrible affects every day? Here are some universal traits. If you've ever lived with an addict, I’ll bet you can see your own life in most of these.

-Secrets and lies: First, the addict lies to himself that he has a problem at all. IF he admits to it, he will go through periods where he will blame you for his addiction and other times when he will tell you he really isn’t sick at all, it’s all in your head. You will begin to doubt your own sanity. He will lie to you where he is at and where he has been, and what he is drinking. I remember too well Rob carrying around a soda until I would have a sip and realize that it was a lot of alcohol with a splash of root beer. He will deny and accuse. He will vanish for hours in the guise of “running errands,” which, in reality, means he is out feeding his cravings.

-Laziness: Expect an addict to not pull his own weight, or any weight, around the house (at least not consistently). After binging, it’s amazing how much rest, relaxation, retreats and vacations an addict needs. Most of the home’s chores will rest on your shoulders.

-You will stop recognizing yourself. Many partners of addicts become codependent or more isolated from people they love. They dread making plans (who knows if the addict will be emotionally well enough for anything), and the thought of unannounced visitors can be frightening. You will drown yourself in your partner's endless needs and drama.

Keep reading....

From Divorced Moms: The pleasure principle, hedonism and why, if you're with an addict, it's not getting better

I have learned so much about addiction, the personality disorders that cause them, the likelihood of improvement, and the devastating consequences it can have on the victims. I have become a HUGE advocate for those suffering life with an addict and often vocally encourage, BEG, people to GET OUT NOW. Here is my latest. Read and learn.

The Pleasure Principle, Hedonism & The Mind of an Addict
by Lizzy Smith for Divorced Moms                    

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October 14, 2015

I have learned quite a lot about addiction over the years and the pathology that leads to those who can become addicts. Addictions aren’t limited to drugs and alcohol-- it can be shopping, gambling, pornography, sex, food… But the mindset of the addict is remarkably similar. And being in a relationship with one is a never-ending hell for you, I promise. There are a few addicts who can get help and truly change their lives. It happens every day and each is a reason to celebrate. But for the rest of us who are living with an addict who is not in full recovery and commitment mode, it is not a fun place for anyone to be—not for you, your children, your family or friends. It is embarrassing, painful and humiliating.

In my own marriage, my husband was an alcoholic. It was a never-ending nightmare of promises to get well, resenting and blaming me for the periods he went dry, wanting a drink, having too many drinks—whatever the combination, alcohol drove everything he did.

At one point, he entered therapy at Kaiser and I, as his wife, was invited to many of those sessions. I liked Rob’s therapist and after one horrible fight between Rob and me, I couldn’t get to our appointment fast enough. Rob was drinking in full glory. To the surprise of no one, Rob didn’t show up. But on my way to the appointment, he called me screaming that he wasn’t even an alcoholic and that his therapist had told him so. He was only telling me this line of shit to try and gain my sympathy so I wouldn’t leave him.

So when I finally spoke with his counselor, it was the first thing I told her. “Rob may not be an alcoholic, but I can tell you that he has an alcohol problem and it is horrible.”

“Wait a minute, I never told Rob he wasn’t an alcoholic. Lizzy, he is most certainly an alcoholic,” she corrected me.

“But why would he lie about it?”

“Because addicts lie,” she said. “And Rob is no exception.”

Of course she was right. He lied about how much alcohol he consumed. He blamed missing wine bottles on his oldest daughter and her friends. He lied about where he was (not at work, really at a bar; not at an AA meeting, really at a bar…). Why was a surprised?

“We got in a really huge fight tonight and he wasn’t drinking, though,” I said. I was confused. “And he can go months without a drink.” Or could he? I would never know because I would never know how much he was actually drinking because he hid it and, you guessed it, lied about it.

“Just because Rob’s not drinking at that moment doesn’t make him a great guy all of a sudden. Alcohol drives everything he does, every decision he makes. Even when he isn’t drinking, he is a dry alcoholic. He wants to drink. For Rob to ever get well, it will take years of non-stop therapy. Besides, he emotionally stopped developing around 13. He has one coping skill—alcohol. If you take that one coping skill he has away from him, he has no coping skills. He has to rebuild it and he will become much less likable in the interim.”

Less likeable? Impossible, I thought. Oh my gosh, I thought next.

And then she introduced me to the “pleasure principle.” “You hear about someone who goes to prison for getting in a car drunk or on drugs and killing someone and then they serve their time and get out. And the next day, they are arrested for drinking and driving again. How is that possible? Because addicts have the pleasure principle going in full force. They will sacrifice anything to have pleasure at that moment. They’ll deal with consequences later but they want the pleasure right now.”

This principle has fascinated me since then. Freud actually introduced the concept as a person that seeks immediate gratification of their own needs right now. Nothing else matters but their pursuit of what they want. Children generally operate on this principle, which is to be expected. What is frightening is that adults should outgrow this and learn about delayed gratification. When an adult hasn’t learned this critical life skill, the consequences are devastating to them and all of those around them. This is when many become addicts—they want the instant pleasure of the drink, drug, sex, shopping high… You get it. The pleasure seeker needs primal gratification this second and if he doesn’t get it, there is an inappropriate outburst of anger, anxiety and tension. Consequences be damned. Boy oh boy did I see this—the wild bursts of screaming, pounding on tables, jumping up and down—classic childlike immature and impulsive behavior. I often wonder what trauma happened in Rob’s life when he was younger that prevented him from learning adult behavior, which is the concept of “delayed gratification.”

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Can someone with cancer date & find love again?

My latest via Divorced Moms. Happy weekend, dear readers.

Lizzy

Dating With Cancer. Can The Chronically Ill Find New Love?

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October 09, 2015

When I first started dating after fleeing an abusive alcoholic husband in the wake of getting diagnosed with cancer, I wanted to do things right. If I was ever going to attempt dating again, I wanted to make sure I never ended up with a guy similar to my ex.

...But wait a minute. I wasn't exactly at the top of my game. I was sick. I was bald, even though I had great wigs and I looked healthy. I was still in the midst of treatment. In fact, in one of the texts that my estranged husband, Rob the Great (Alcoholic) sent me, he reminded me of the fact. "I'm a great guy! I'll have no problem finding another girlfriend in no time. You just don't appreciate me. You, on the other hand, will never find anyone as fabulous as me. You're a single mom living in your basement surviving on disability." He always had a way with words.  

Was he right? Could I date? What kind of guy would I attract? What information did I owe him about my illness? 

The more I thought about it, I didn't really care if I found another husband. I knew I would much rather be single than end up with a guy like Rob. But I was very curious as to what the dating scene for someone like me would look like.

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In defense of a cuddle party?

This one needs know explanation, just a good read! My latest via Divorced Moms...

Who Is Up For A Co-Ed Cuddle Party, No (Sexy) Strings Attached?

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BY LIZZY SMITH

October 07, 2015

I was scrolling through my Facebook feed a month ago when, inside a private group, someone mentioned their new-found obsession: the cuddle party. A group of adults gather at some random house for the purpose of cuddling up. 

Say what? I thought it was a big huge joke. It brought up all kinds of questions for me, like...

1. Is this a Mormon thing? Since the devout do not (or at least, should not) have sex before marriage, a group setting of snuggles keeps things relatively "safe."

2. What if a guy gets, well, aroused. Or gropes someone. Or... oh my head was beginning to spin.

3. What if I got hooked up with a guy (or woman) I didn't want to cuddle up with?

I mentioned some of my initial thoughts and did I get an earful from one woman!

"Maybe if everyone's life was as PERFECT as yours, Lizzy, we wouldn't need a cuddle party," she wrote.

I needed to stop her. "Hey, sweetie," I responded. "I could probably one-up you across the board on how my life was never perfect, and certainly isn't now." I was so angry. And then I thought, hey, I was passing judgement on her, too. Maybe the whole cuddle party had some validity to it?

I did some asking around in the group, did a little research, and actually found a friend of a friend ("Chloe") who has been to a few who was willing to talk about it. Here is what I learned...

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Happy Wedding Weekend To Us!

William and I had one of the funnest weekends EVER! While we officially got married a few weeks ago, we celebrated this past weekend. Here's how it all went down...

On Friday, I let the girls skip school. Early that morning, William, Siena and I headed to the airport and picked up our first set of guests-- his daughter and my former step-daughter, Kalie. It was so awesome to see them both! I have kept in touch with Kalie from the day I left her dad and she is one of my closest friends. Not long ago, I realized that for every big event, I usually called my BFF Julie, my mom, and then Kalie. So she flew out, her first visit since we moved out. After driving around and showing the girls Williams' former homes in the area, we dropped him off, picked up Morgan, and met several friends for lunch at one of our favorite Mexican restaurants out here. After that, we hit up the spa and got mani/pedis and facials. We went home, had time to rest for a bit, and then went out to a high school football game between two big rivals. My BFF Julie arrived and then we all went out for a late dinner.

On Saturday, we got dressed up, went to lunch at our favorite local restaurant, Bona Vida, with close family and out-of-town guests. It was delicious. Afterwards, we drove up into the spectacular American Fork Canyon for photos. It was a bit chilly but beautiful and the lighting for pics was perfect.





That night was our party. It featured great food, a bonfire outside, and a DJ with dancing. I felt so silly, like I was back in high school, but Julie, Christina, Kalie and I set up a mini bar in the master bathroom and we got a bit tipsy. We joined very cool friends from our Bible study group on the back deck sitting around the bonfire indulging even a bit more. I made it indoors and danced with my three year old nephew, Dylan, forever. He must have been tired enough afterwards to sleep for two weeks. William and I dance, so did my parents (my parents, who never do that!!!), my aunt and uncle, Emmy's very reserved son... The DJ was amazing. We hired people to work our party so they did most of the clean up (I highly recommend doing this!) so when everyone left, we went straight to bed. I think I was asleep before my head hit the pillow.


Sunday morning, Julie and I drove Kalie to the airport. I was so sad to see her go! It felt so natural to have her around that I had to keep reminding myself that she was my ex husband's daughter! (She is nothing like him, thank God.) I can't wait to see her again.

The one big drag is that on Saturday, I noticed a big huge red swell around my central line. I thought, FUCKING CANCER YOU WILL NOT ROB ME OF THIS JOYOUS DAY. But, seriously, what should I do-- do I have a blood clot that requires me to be in the ER or I might DIE? I called Huntsman emergency line and since I had no pain in my arms or legs, or fever, then I was probably ok. So I enjoyed my day to its fullest. By Sunday night, however, that swelling got far bigger and more tender. I went to the ER where they did an ultrasound and blood work. The ER doctor looked alarmed when she came back. "It's amazing that you look this great when your blood work looks like this."

I wanted to scream. DON'T FREAK ME OUT. I AM ON POMALIDOMIDE WHICH LOWERS MY RED AND WHITE BLOOD CELL COUNTS. I AM ANEMIC, DUH, AND IT IS EXPECTED!
I had to talk myself off an anxiety cliff. That flaming swollen red area around my port had no obstructions and my hemoglobin was a scary 7, when you transfuse. So here I am on Monday, on antibiotics for the flaming swollen area and getting two bags of someone else's donated blood. I know that after the transfusion, I'll have loads of more energy. I actually didn't feel bad. Yes, very tired, but after the weekend we just had, that is to be expected. Plus, I had to wake up at 4AM this morning to take Julie to the airport. Nonetheless, blood products always make one feel like a new person.

So myeloma TRIED to ruin my wedding day but it did NOT. Fuck cancer, excuse my language. I HATE YOU.

But the great news in all of this is that I am now married and officially celebrated to a man I love and adore. We respect each other. I am so blessed and lucky. Even after a devastated health diagnosis, it is possible to rebuild from the ground up and find happiness, love, meaning and peace. I am proof of it.

My myeloma clinical trial & wedding party weekend

Do I Look Like A Guinea Pig? Myeloma Survivor and Advocate Embarks On A Clinical Trial

BY LIZZY SMITH for Myeloma Crowd 

I got married! William and I met after my myeloma diagnosis, which goes to show that we can rebuild our lives entirely post cancer and find joy and happiness beyond life’s curve balls. It is not always easy, there are good days and bad, but not all is lost.

But more importantly, I embarked on my first clinical trial, ACY-1215. I got nearly three years of remission out of tandem stem cell transplants in 2012 and then those dang myeloma markers came back. I have written a million times about how important it is for us patients to get into clinical trials. We are not guinea pigs, we get the best-in-class treatment plus potentially a better drug that others outside the trial cannot access, and we may be part of finding our own cure. Trials are how new drugs and treatments are discovered and the only way we will find a cure. It is a great idea not to wait until you have exhausted all your options. You can read some of those articles by clicking on these links:

• Clinical Trials, Multiple Myeloma & Why You Should Participate
• God Helps Those Who Help Themselves

I was not eligible to participate in a trial for a long time because I did not have active disease. But during that time, I armed myself with knowledge. I knew the types of clinical trials that were out there, and I got over any hesitation I may have had about participating in clinical trials. When the time came to discuss what was next during relapse, I was ready.

I met with my team and they mentioned another stem cell transplant.

“I want to do a clinical trial,” I responded. “I may do another transplant but why should I do one now?” I was insistent.

They brought up auto transplant again. I know that when and if I ever do another transplant, auto or allo, I will not just do your typical protocol. I will get into a trial that is using novel drugs or approaches (and there are many). I can’t even fathom considering doing an old, tried and true treatment– I am going for (maybe) better.

And then I realized this conversation was semi going nowhere. I started rattling of several drugs or trials that sounded of most interest to me. I was not an uninformed patient, I felt empowered.

“What about daratumumab or elotuzumab?” I asked. “There are several more that will be approved by the FDA in the next year.” I rattled off those drugs and trials, too, at one point taking out my smart phone and starting to look up the names of the trials (except, dangit, I had no cell reception in that windowless office!). To find clinical trials that might work for you, click Sparks Cure’s site here or visit www.sparkcures.com. You can search by drug, disease type, location of trial, and so much more. And, unlike the government’s clinical trial site (which, to me, is nearly impossible to navigate), this one is easy-peasy, I promise!

My team started listening and, I felt, taking me very seriously. As it turns out, there were a few trials that were finally offered to me and the one I got into seemed like as good as any. I felt good about embarking on this journey. I hope it works. I feel like it is working. I feel like I am contributing to research and helping others who will unfortunately follow in my footsteps. And if it doesn’t, I am ready with a list of other drugs and trials I want to get in. For one, I really like what the NIH is doing with allo and auto transplants. If you want to learn more, click here. On September 25, myeloma patient and pioneer Jenny Ahlstrom interviewed Dr. Fowler on Myeloma Crowd Radio about how doctors make both auto and allogeneic transplants better. Using allo transplant is the ultimate in myeloma immunotherapy because it replaces a faulty immune system with a healthy one, but it is not used frequently in myeloma because of the potential for fatality from graft vs. host disease (GVHD). Dr. Fowler has done intriguing work at the NIH over the past decade to iterate on working solutions to improve the effectiveness of allo while also reducing graft versus host and is now finding application of his immune therapy in the autologous setting. He discovered that new T cells from transplant donors actually had an impact to kill myeloma cells, not just replace bad stem cells. What is really awesome about working with NIH is that treatment is free and sometimes there are even travel stipends for those who participate.

Today as I write this article, I am sitting at clinic. My trial involves a lot less time than what I was doing (two days in clinic per week). It starts out a bit intense with one day of timed labs for two weeks and, once chugging along, it is just one day per month. And the drugs are all oral– an awful tasting liquid, one pill, and Dex once per week. The drag part is that a potential side effect is neutropenia (when you do not have an immune system) and anemia. On Sunday, the day after our wedding photos and party, I went to the ER and learned I was super duper anemic. My hemoglobin was at a frightening 7, which means it was time for a blood transfusion. Since I was overall doing well otherwise, we decided to wait until today (Monday) when I could get that treatment at my normal hospital, Hunstman Cancer Institute in Salt Lake City. So here I am, eating a burger (something I almost never do!) and watching someone else’s blood drip into my vein (it really grosses me out). I am also on the detested neutropenic diet– no fresh fruits and veggies for me. (I’ll still eat healthy foods but I’ll be cooking the heck out of them first.)

So myeloma side effects nearly robbed me of our very fun day on Saturday. But it didn’t. This weekend was perfect. We started off the celebration with friends arriving on Friday, girls’ lunch, followed by mani-pedis and facials, and a high school football game. Saturday was lunch at our favorite restaurant, a drive up the canyon for photos, and the most fun reception ever at our house– food, DJ, dancing, and a bonfire in the back yard. I am so blessed with the best husband ever, great friends, and an endless support system.

Blessing to all of us cancer warriors. One day at a time.

Lizzy