Tuesday, March 31, 2015

Thanks to Twitter, American Airlines finally gets it right (for this cancer patient)

Before leaving for our trip to Buenos Aires, Argentina, I had a doctor's appointment. Turns out, I could not take such a long break from treatment. So I spent $700 changing our return flights so we left a day early and I could go straight from the airport to my chemo treatment at Huntsman Cancer Institute in Salt Lake City. After spending 10 days in Argentina, Brazil, Paraguay and Uruguay with a million different moving parts, flights, tour groups, buses, and you name it, everything went without a hitch. We boarded our American Airlines return flight in Buenos Aires, flew to Dallas, then got on the connection to Salt Lake City. All looked fabulous.

And then as we were sitting on our flight, all buckled and ready, the flight attendant announced that American Airlines' baggage handler had rammed the truck into the plane and it was too damaged to fly. We all needed to get off the plane and wait for a new plane. She thought maybe 30 minutes. Right. Big Fat Liar. I immediately called customer service and there was another flight that left almost three hours later. Lucky me, because I didn't trust a word out of American Airlines' mouth and got on the phone immediately, we got on that one.

I got to Huntsman four hours late, almost didn't get my appointment at all, and caused all kinds of employees to have to work late.

I emailed American Airlines. I paid $700 for a flight that American Airlines did not deliver on and it was their fault. Sweet rep sent me a $100 travel voucher. I was outraged. I almost emailed them back and then it hit me: Go public. I do Twitter! And so I complained to the world via Twitter. American Airlines was failing cancer warriors by not living up to the flights and money I had spent. It took a week but I got an email yesterday: $700 travel voucher. Better!

Lesson learned: Going public works. Failing customer service reps don't get to hid behind anonymous incompetence. I highly recommend it if you must. And American Airlines finally made good. I am satisfied.

Thursday, March 26, 2015

I should have dumped him sooner but I felt sorry for him

Liz Lizette Smith Nielsen's photo.

Today I am sitting in clinic getting Aridia (three hours) via IV, then Carfilzomib (30 minutes), a pregnancy test so I can get my Revlimid filled (so absurd that at 47 years old, Celgene still requires a monthly pregnancy test so they will dispense my medication), and having loads of time to write and blog and catch up on Facebook. This is day 2 of 3 days that I will spend in clinic THIS WEEK ALONE. Yesterday I was here for hours getting IVIG via IV to strengthen my immune system. My white blood cell counts are really low and I am sick all the dang time and I am so very tired of it. So this will hopefully help out. And then tomorrow, it's day 2 of Carfilzomib. This drug is administered via IV twice per week. This week, it's Thursday and Friday and each appointment takes about an hour minimum. Sigh. I'd rather be outside hiking the canyons. Or doing laundry.

Being a myeloma warrior is a very time consuming process. It's not painful, but side effects suck and the total fatigue of sitting for so many drugs, filling drug prescriptions, and taking them is making me a little crazy.

Anyway, interesting conversation with my extremely wise 14-year old daughter yesterday. She had a boyfriend for a few weeks. Having a boyfriend (at least for my daughter at this young age) means that the two of them see each other at school and basically everyone knows that they like each other most. They also text and Snapchat from home. I do not allow my daughter to go on real dates, not until she's older. Anyway, she decided for a myriad of reasons that she didn't want to be in a relationship anymore so she broke it off with him.

"I'm so mad at myself," she said yesterday in the car while we were driving to tutoring. "I never wanted to be in a relationship with him at all. He was just really nice and I felt sorry for him."

Oh, wow, the "sorry" thing. What a great teaching moment and I'm so happy we have the kind of mommy-daughter relationship in which she would confide in me at all. And I'd much rather her learn about this stuff at 14 years old than at 38 years old like I did.

"You must always put your best interests first, ESPECIALLY when it comes to boys," I said.

"Did you ever do this?" she asked.

Uh oh, this one wasn't a pretty answer. "Yes," I said. "With Daddy. I never loved him, I did like him because I didn't know about the alcohol. And he was really into me. I didn't want to hurt his feelings and break up with him, or even continue going out with him at all. And then look what happened, I married him. It didn't work so well."

My daughter, who loves her dad and misses him like crazy, said, "OK I don't want to talk about that anymore."

"I agree. I'm really sorry. But I always want to be truthful with you when you ask a question," I said.

Truth can be really hard to hear. Painful. Awful. So much easier to lie. But I simply won't do it. I won't offer up info that's awful, but if someone asks, I'm telling the truth. Always. It's that important with building character and trust.

Next question. "Have you ever really been in love with a guy?" she asked. Of course, I wouldn't be getting married again if I didn't love Bill. I loved David, and I loved Todd insane amounts, I said. I cried forever when it ended. It took me a good solid five years before I felt OK with that relationship's demise.

"Love is amazing when you find the right boy," I said. "It also hurts a lot sometimes. But it's worth it."

And then we moved on to another topic. I love being a mom sometimes.

A great story about Kerrie, a divorced mom who rebuilds her life from the ground up

Divorced Mom Success Story: Meet Kerrie. Her Guest Post On Health
by Lizzy Smith                    
March 26, 2015
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Fotolia_79554844_XS.jpgI love a good story about divorced moms moving forward in their lives in ways that they could not (or did not) do during their failing marriages. One such story is of my friend Kerrie. She was a stay at home wife and mom with three very young children. Her marriage was a tough one and they eventually split. All of a sudden, Kerrie found herself single, without a job, and wondering how she was going to support her family.

She enrolled in a local cosmetology school. That's how we met. At the time, I was completely bald, just having completed some very tough chemo treatments and two stem cell transplants to fight multiple myeloma. I was desperate to stimulate hair growth and I started going to a hair school near my home for scalp massages aimed at doing just that. I met Kelsey, who still does my hair today and is one of my favorite friends. My hair started growing back super curly and Kelsey, twice each week, would massage my scalp (yum!), and dry and flat iron my hair into submission. One of her fellow students was Kerrie. One day we started up a conversation, exchanged phone numbers, and started meeting up for coffee or lunch.

Kerrie graduated from school and decided she wanted to help others achieve health and wellness instead of doing hair. She had become passionate about alternative health methods in her quest to stay healthy, fight of illness, and heal emotionally. Today, she has her own office space and conducts wellness seminars. I'm so proud of her success. 

So recently I asked her to write a guest post about health. Here it is. Enjoy!

Prevention is key to optimal health: It starts with sleep, nutrition & exercise
By Kerrie Percey (with Joni Luke)
I don’t know about you, but if there is anything I do NOT have time for as a mom, it’s being sick. I know from personal experience that life doesn’t stop for us to recover, whether it be from illness, stress, or emotional trauma. We may feel fatigue, depression, and more but life continues and expectations and responsibilities never end. So many of us moms, especially we have children at home that depend on us, we have additional things to think about, like homework, science projects, dance lessons, sports…the list goes on. And if you’re like me, none of those things are yours, they all belong to your kids.

But if we don’t find time to take care of our needs first, it makes recovery, health, healing and fighting disease that much harder.

So then what can we do to stay on our toes? Prevent.

What if our bodies were able to avoid being acidic – which only leads to being even susceptible to disease and illness? What if we were getting a restful sleep every night? What would it feel like to have more of the energy we need to accomplish the most important things on our list?

Keep reading...

Tuesday, March 24, 2015

Divorced Moms column: Spring is here! Now it's time (for me) to refresh, renew, rejuvenate, celebrate

From Divorced Moms. Spring is my favorite time of year! Ok, so is Fall. Let's call it a tie. Regardless, I'm on a mission to clean, purge, refresh, rejuvenate and celebrate. For real. Celebrate LIFE, LOVE, RENEWAL. Like my upcoming wedding (in October), the fact that I'm still alive, and that I have the energy and ability to LIVE, LOVE, hang with my children, explore the world, and find meaning. Despite some pretty big life challenges, I am a warrior and survivor.

One of the most amazing feelings for me is "newness." I love fresh, happy, and whimsical. If I were a major brand, I'd be Kate Spade because it encompasses all of those attributes. I love the smell of flowers, lemons, and lavender. I love yellow, apple green and orange. Citrus. And so I am on a quest each day to toss out the old, clean, organize, replace and breathe. So zen, calming, peaceful, joyful and happy. So today's column is about how I'm attempting to accomplish that.

And now I'm off to get some exercise, outside, smelling fresh air and getting a little of that vitamin D I write about. Happy Tuesday!

Spring Cleaning: 12 Ways To Refresh, Rejuvenate & Celebrate 
by Lizzy Smith                    
March 24, 2015
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The weather is warming up, Spring Break is around the corner, and I'm feeling an insatiable desire to clean, celebrate and rejuvenate. I made a list and I started working on it last week. Here goes:

1. Closet Purge - cost $0
Last week, I went through our closets and purged, purged and then purged some more. In my nine-year old daughter's bedroom, I took two enormous trash bags to a re-sell shop and scored $50, just like that! Between my 14-year old daughter and my closets, six huge bags of clothes went to a different re-sell shop. Hello $200! I also re-organized those closets, putting shoes on new shoe-racks on the back of our doors, placing ski clothes in bins, and dividing drawers using shoeboxes. I seriously feel like I have taken a major shower when it was over.

2. Scrub Down - cost $0
I cleaned and scrubbed our bathrooms. I went through drawers and cabinets, re-organized and tossed out tons of stuff. And then I rubbed the floors down with lavender oil. Next, it was our bedrooms. I vacuumed, had the carpets professionally cleaned, re-organized, dusted, and rubbed lemon essential oils around the windows. Oh my, it smells delicious around here, which is so rejuvenating and calming.

3. Handbag Swap - cost $0
I switched out my black and cream-colored handbag for my bright green Kate Spade bag. I love the daily pop of color.

4. Shopping! - cost after the $250 I earned from selling clothes to a re-sell shop $400
Because my youngest daughter grows like a weed, I basically started from scratch on her summer wardrobe. And for my older daughter and I, it was time for a refresh. Shorts, sundresses, flip-flops and swimsuits. Bold, fun and happy colors (think apple green, bright yellows and soft pinks), along with super bling-y flip-flops. Since I sold so many clothes back, it was amazing how far $250 stretched. I started at Ross (three pairs of flip-flops for just $13 each), Old Navy (clearance rack for shorts at just $4 each), Walmart (they had an entire section where everything was $3), and Target for my daughters. I splurged on a few fun items at Anthropology and Free People for me, two stores that I am obsessed with these days. My favorite purchase so far is a navy blue floral sundress ($28 from Old Navy) and a bright orange lace retro-sixties top ($12 from Ross).

5. Spa Day - $120 for facial and lunch; Botox $550
Not long ago, I met a new friend who is a fellow myeloma survivor and just a few years younger than I am. Together, we are going to get facials and lunch next week. After loads of chemo, doctor appointments, and more drugs than one should ever need to take, we deserve it. Plus, my skin is tired and dry. I'm also getting a Botox refresh on my forehead, something I did for the first time back in December.

6. Power Walks - cost $0
Because the weather is beautiful here these days (knock on wood), I've re-started my outdoor walks. Fresh air, vitamin-D, and a good workout that doesn't take place inside is amazing. I am constantly on the prowl for new hiking trails and I discovered a new canyon nearby on a random drive. I'm heading there in just a few hours to check it out on foot.

7. Vacation Time - $1,200 (2 adults, 1 child), not including air, for seven days
I'm a big huge fan of education and school. But I'm also incredibly tired of homework, structure, and more homework. Thus, Spring Break is one of my favorite times of year and many months ago I found killer deals on a cruise and booked it. We leave in ten days and I'm counting the minutes until I can sit at the pool and worry about absolutely nothing. Truth is, cruises are not my favorite way to travel. There is too much food and when in port, it's a bit like a cattle call. That said, when traveling with children, it's a great way to travel. But if that doesn't fit the budget, there are stay-cations (vacation near home) where you can rent a hotel and explore your city like a tourist. Or, consider spending Spring Break doing something unique in your own neighborhood every day, like a hike, a local museum, trying out a new recipe, or walking animals at the homeless shelter. If you're really brave and have the cash, do something really "out there" like skydiving (this is on my short list). Anything new, fresh, and that puts a smile on your face is a great way to welcome in a new season.

Keep reading...

Thursday, March 19, 2015

From Myeloma Crowd: This is chemo brain

From Myeloma Crowd.

Don't forget!

And This Is Chemo Brain. We’re Not Making It Up!      


Just a week ago, someone asked me what chemo brain was like. Here’s an example. I’m in my car purchasing drinks for my daughters at the drive-thru at Beans & Brew. The barista tells me the total, I get the money out of my handbag and then I pick up my phone and start calling my best friend.
“Mom! You haven’t paid yet. Are you kidding?” my 14-year old daughter, Morgan, said.

I looked at her confused, then looked at my hand and there it was- the money. I forgot to pay.
Just minutes later, my nine-year old stops me as I’m driving home. “Mom, we are supposed to be going to the orthodontist!”

Oh, yes, why am I driving home?

We all laugh at crazy mom. Hahahaha.

There are conversations I’ve had with people that I don’t remember. I supposedly promise my children I’ll bring them lunch to school. I don’t remember that either. I put things on my phone calendar but I often forget to look at my calendar.

It’s not so awful that I can’t drive, travel, or enjoy life. But I’ve long stopped trying to hide the fact that I fish for names, can’t remember words, and show up for events on the wrong day. It’s just one more thing to blame on cancer. “Sorry, I have chemo brain!” I’m apt to say. And it’s not like I’m making it up. It’s true. It’s real. And it’s sometimes really annoying. Oh well, I’m alive!

But chemo brain isn’t simply forgetfulness. Heck, we all forget things, even if we don’t have cancer, dementia or Alzheimer’s. But it’s a fuzzy feeling that is often exacerbated by fatigue (thanks, myeloma and meds!). It’s not feeling sharp. When my daughter talks to me too fast and then someone else starts talking to me at the same time, I just can’t do it. I want to put my hands over my ears and scream “STOP!” I feel like 300 people are screaming at me at the same time. Sometimes even trying to remember things takes more energy than I have so I simply don’t. Some days (not all!), I have to really concentrate. Like my bedtime routine takes forever– take meds, put jammies on, wash face, put on lots of essential oils, turn on my electric heating pad, put my children to bed, read to my youngest child, brush teeth, get lunches ready in the morning… I finally made a list so that when chemo brain rages, I don’t have to “think,” I can just “do.” Just go down my trusty To Do list and give my cognitive thinking skills a rest.

So today when I stumble on an article in OncLive (Chemobrain—It’s Real, It’s Complex, and the Science Is Still Evolving), I am relieved. Just in case someone doubts me, I can send them a link and say I’m not making this up!

Apparently, chemo brain is most intense during treatment. However, since many of us myeloma survivors are in long-term treatment, we may not get the “benefit” of going back to baseline of how we were before illness.

But according to the study, some 30-percent of cancer patients also experience other emotional ailments associated with chemo brain, including depression, anxiety and distress during treatment. 30 to 60-percent also have insomnia, and poor concentration and memory.

No kidding! We cancer patients have been saying this all along. Now we have validation.

I found this example in the article very interesting:
In an early study exploring functional changes in the brain due to chemotherapy, [the researcher] asked twin, 60-year-old females, one of whom had been treated with chemotherapy, to perform a series of tasks while undergoing MRI. The resulting images documented areas of hyperactivity in the chemotherapy-treated twin relative to the untreated twin, which the authors interpreted as areas of deficits due to chemotherapy. Findings of several functional brain imaging studies have been reviewed and relative to “controls,” individuals treated with chemotherapy have been found to exhibit functional differences, including both areas of hyper- and hypoactivity during tasks, as well as differences in brain activity while the brain is at rest. 
In addition, structural differences have been noted as well. [Researchers] compared brain images of women with breast cancer, some of whom received chemotherapy and some did not, and found decreases in volume and density of both white and grey matter in the group treated with chemotherapy. Chemotherapy-related reductions in grey matter have also been correlated with impairment in cognitive abilities.
So what is someone with chemo brain to do? If you’re looking for a magic pill, it doesn’t exist. Exercise and socialization helps. For me, I write myself a lot of notes and try to do better with looking at my calendar many times a day. I tell people I have chemo brain and that’s why I forget stuff. And, well, I move forward in life, enjoy and make apologies when I mess up.
Here’s what the article says about help:
Healthcare professionals are urged to validate patient concerns, provide education, and to assess for contributing factors, including medications, depression, anxiety, pain, fatigue, substance abuse, and sleep disturbance. Although most patients eventually return to pretreatment baseline, a subset report significant impairment in quality of life, independence, and self-confidence. One of the most important things friends, family and caregivers can do is to provide emotional support by listening to the patient’s concerns and validating the existence of chemobrain. It is common for families, coworkers, and friends (and sometimes even healthcare professionals) to not understand that the emotional, physical, or cognitive effects of cancer treatment may linger after treatment has ended.

Healthy Magazine: Taking On Cancer. Lizzy Smith & Jenny Ahstrom featured in the March issue

I'm so excited and honored to be featured, along with fellow myeloma warrior Jenny Ahlstrom, in Healthy Magazine! Here it is:

Taking On Cancer

How two cancer patients are changing what it means to fight the disease

Written by Michael Richardson | Healthy Magazine
Cancer looms as an almost impossible hurdle in the eyes of many. Research is progressing quickly, but people are still dying, and cures seem so slow in coming. With many cancers, patients feel like their fate is sealed, that they’re powerless in the face of such a mighty enemy.

While cancer’s devastation leaves many in a truly powerless state, two women with myeloma are showing the cancer community just how big an impact individuals can have for progress.

Jenny Ahlstrom and Lizzy Smith decided to help even though nobody asked them to, because they couldn’t just sit and wait for the end to come. Both started with little understanding of medicine or myeloma, but four years later their work has significantly advanced myeloma medicine and has shaken the perception of what a cancer patient is capable of.
Myeloma (a.k.a multiple myeloma): Cancer of the plasma cells in the bone marrow. According to the National Cancer Institute, about 45 percent of patients survive 5 years. In 2014, 11,000 Americans died from myeloma. More than 80,000 Americans live with the disease.

Clearing Confusion

After Jenny was diagnosed and began to progress through different treatments, she worried about relapsing and looked for new treatment options. She found a complicated world. She was interested in joining a clinical trial for myeloma research, but found 450 such trials to choose from, and didn’t understand much of what any of them were trying to do.

She began to see that the large majority of myeloma patients (and cancer patients in general) didn’t know much about their disease, and therefore couldn’t offer much input to their medical professionals or researchers. Myeloma, and many other cancers, have multiple avenues of diagnosis and treatment, and patients are often unaware of important tests they haven’t taken or treatment options they haven’t been offered.
But the doctor should be directing treatment, not the patient, right? True. But Jenny says the outcomes from care vary widely for myeloma patients, depending on who they see and what treatments they get. Those who see a myeloma specialist can expect to live years longer than someone seeing a general oncologist. She says people who don’t see a specialist are often seeing only half of the story and half of the possibilities.

Patient education is vital, Jenny says, because it gives hope, improves quality of care, and helps research progress.

So Jenny took action. She began interviewing leading myeloma researchers and publishing a radio program that now has an international audience and more than 500,000 listeners. Jenny and Lizzy launched a myeloma website (myelomacrowd.org) that has hundreds of thousands of visitors, where they interpret complicated research language for a normal reader. A quick glance at the numbers suggests that Jenny and Liz are reaching an enormous portion of myeloma patients, and the numbers are growing.

Pushing Research Forward

On the radio program and on the website Jenny and Lizzy work to dispel misconceptions about clinical research and educate patients about opportunities to participate. It is essential that cancer patients get involved in clinical research, for a variety of reasons:
  • Getting participants is among a researcher’s most difficult tasks, and is often the reason why research is slowed.
  • Clinical trials are a way for patients to try the most modern treatments. Participation could save a patient’s life.
One reason why cancer patients don’t join clinical trials is because they don’t understand the trials and what may be involved, or don’t want to feel like a guinea pig. The website and radio shows are changing that, at least for myeloma research.

“It’s been extremely valuable,” Jenny says.

Many cancer patients are diagnosed, and just sit around and wait for “smart” people to cure them, Jenny says. They don’t realize how much researchers value a patient’s support and help. She says researchers love that someone is spreading the word about their work, bringing them participants, and interpreting the findings.

“My whole approach has been, ‘how can I help you do your job?’” Jenny says. “I don’t feel like I need to get permission to help. Researchers don’t have time to distill their research down and explain it to patients. We’ll be their marketing arm, in a way.”

Of course not everyone with cancer is capable of rallying to the research flag. Cancer and its treatments bring exhaustion, illness and other debilitations that make what Lizzy and Jenny do largely impossible. Others find themselves completely overwhelmed and therefore immobilized.

It may be for this type of patient that Jenny and Lizzy have done their greatest work. Their website brings together myeloma patients in a powerful way, and patients who were once alone now have a thriving support group and a steady stream of comprehensible, up-to-date information from trusted voices that helps them get the best treatment for the best outcomes.

“Peers give the power of hope,” Lizzy says.

Peers and education about the illness are big reasons why Lizzy says she isn’t afraid of the disease.

From Chronic to Cure

As Jenny and Lizzy dug deeper into the myeloma research scene, they found that much of the funding and research initiatives were directed at developing treatments for myeloma as a chronic condition. In other words, researchers were trying to find ways to extend the life expectancy of a patient, rather than search for a cure.

This represents a disconnect between patients and researchers, Jenny says. She, along with the majority of patients, care little for such research, and would rather see funds devoted to research for a cure.

This year, the Myeloma Crowd Research Initiative, which Jenny and Lizzy had a key role in creating, seeks to fix that disconnect, by bringing together doctors, researchers and patients to discuss research direction. This is important because it is able to compromise the various opinions in the myeloma field. Some have little belief in the possibility of a cure, others have more hope.

“You need scientific validation, but you also need patient input,” Jenny says. “You need all stake holders involved.”

Some may see Jenny and Lizzy’s story as two rabble-rousers wreaking havoc among cancer doctors. But the truth is, oncologists have told Jenny that she knows more about myeloma than many cancer doctors.

An important argument for patient involvement in these processes is the story of a drug called thalidomide, now one of three staple drug classes for myeloma. A patient had heard about this drug, and asked the doctor if it could be used, even though it wasn’t accepted as a worthwhile treatment. The doctor tried it, mostly out of compassion for the patient, not out of faith in the drug. Eventually, this doctor found that the drug brought excellent responses in many patients.

This hopeful urgency is what a patient has to offer, and it can be valuable.

“The patient has the motivation of living life and death every day,” Jenny says.

Understandably, many feel hopeless in the face of cancer. But Jenny says that there is value in a patient being his or her own advocate.

“My efforts help me cope,” Jenny says. “It’s like it flips a switch where you were the victim of cancer and you transition to being an independent person who has the freedom to act.”

Keys for Every Cancer Patient

1.Find the right oncologist or specialist.
2.Get educated.
3.Get involved in clinical trials. This will help the patients in your generation and following generations.
4.Get connected with others.
5.Don’t be afraid to get a second or third opinion.

-Lizzy Smith
Article Reviewed: March 2, 2015
Copyright © 2015 Healthy Magazine
Michael Richardson is an experienced writer, reporter, and interviewer. His writing has appeared in many publications, including KSL, Deseret News, BYU's Family Connections Magazine, and now, Healthy Magazine. Michael is involved in promoting the ideas of social entrepreneurship and solution journalism. And, when he's not saving the planet through his social journalistic ventures, Michael revels in exploring the latest developments in the field of healthcare, its history, its advancements, and where we will be tomorrow.

Myeloma Crowd: I'm going on vacation and I deserve it!

From Myeloma Crowd.

Woman with a suitcase

I’m Taking a Myeloma Holiday In Argentina. And I Deserve It!       


So my dear friends in the myeloma world, I am taking a break from thinking about multiple myeloma and cancer. That’s right, and I’m doing it a long ways from home. In Argentina, Uruguay and Brazil for 10 glorious days. It’s supposed to be warm and humid. Sunny. Hooray! Which doesn’t mean I’m being stupid about it. I’m still taking my meds with me, some antibiotics just in case I need them, over-the-counter meds for colds, and the phone number of my doctors. And then I’m going to enjoy, experience and explore.

Bill and I are flying to Buenos Aires and staying with a former colleague. Funny how things work. We were getting ready to book a trip to Cabo San Lucas (Mexico). We had the whole thing already booked, we just had to pay. And then, out of the blue, my former colleague from some 20 years ago sent me a message via Facebook. She was moving to Buenos Aires for a work assignment and said, “Hey, you love to travel. Come visit any time.” For real? Cabo became a distant thought and two days later, we purchased plane tickets for Argentina. So our little itinerary involves a flight to Iguazu Falls for three days, and a side trip to Montevideo, Uruguay where my aunt and uncle live. I’ll miss my kids like crazy but for 10 days, this mom and myeloma warrior deserves a break.

I’ve been battling a cold for the past week. Yes, another cold. I just healed from a terrible cold a month prior and here I am, sick again. Maybe it’s just winter but I’m so done. I want warmth, sun and natural vitamin-D. And I don’t want to go to clinic every week, even if it’s just for a bit.

Which is exactly my point. We myeloma warriors need and deserve breaks. When we’re in the midst of treatment, I know reality takes precedence. Lord, I know this all too well. But it’s also important to take time to play and rest– mentally and physically. And I don’t know about you, but taking time to bask in doing what we love is important, too. To not lose ourselves in our cancer battles. No, cancer doesn’t get to take that away from me. I won’t let it. And I love to travel.

This will be my fourth Big Trip since my January 2012 diagnosis. The first was via Amtrak from Salt Lake City to New York City with stops in Chicago and Washington, DC. The second was to Copenhagen where we boarded a ship with stops in Estonia, Mecklenburg (German), St Petersburg (Russia), Stockholm, and Helsinki. The third was to Venice where we spent the next three weeks in Northern Italy, Switzerland, Athens, Ephesus (Turkey), and Dubrovnik. And now this one. I am grateful that I’ve had the financial support to make these trips happen. But beyond that, I’m grateful that I’ve been able to do it.

We cancer warriors deserve to still be us, do what we love, and take those glorious mental and physical breaks from disease. And I certainly intend on enjoying this one to the fullest.

Until I return, best wishes, love and health. Cheers!


Divorced Moms: Marriage Hell-- You have a tiny penis and you suck in bed

From Divorced Moms.

Marriage Hell: You Have A Tiny Penis & You Suck In Bed
by Lizzy Smith                    
March 16, 2015
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Fotolia_70369243_XS.jpgIn case you missed it, I was married to a highly functioning, raging alcoholic who was verbally and emotionally abusive. And on the eve of my cancer diagnosis, I finally had enough and left him for good.

Throughout our marriage, our typical fighting pattern went like this: Rob would get drunk (or want to get drunk) and scream at me in that horrid pitch that only Rob can reach. Ninety percent of the time, I'd walk away. After all, arguing with a drunk is pointless. But that would never be good enough for Rob. He'd follow me around the house. Sometimes I'd say something like, "I'm walking away from you. Go away." In which case he'd respond by screaming some more with this crazed, glazed look in his eyes. If it was a weekend, I'd pack up the girls and me and go stay in a hotel or stay with my best friends in Long Beach before coming back. And then Rob would start texting or emailing me horrible messages, which I'd ignore for a day or two. And then I'd start responding. It would take two to four days before Rob would calm down enough and apologize for his ridiculous behavior and promise to go to help with his drinking problem. And, of course, that would never happen. He'd say he was at an AA meeting when, in fact, he was drinking at the San Diego Brewing Co instead.

Rob always accused me of having a huge temper. I can honestly say that I deserve a medal for the most part for ignoring his stupid behavior. Until I didn't. That one out of 10 times that I decided to fight back got ugly because I was ready to defend myself (finally) with every ounce of energy I had.

So this time I told him what I really thought about him but always had the somewhat good sense beforehand to not say. Because this time, I wanted to finish the marriage, make Rob hate me enough that he would never attempt to come back. I wanted him gone forever. So I told him the following:

You have the smallest penis ever

You suck in bed

You're beer belly is disgusting 

I never loved you (true statement)
When I met Rob, he was simply a guy to hang out with while I tried to mend my shattered heart from a prior relationship. Rob was really good at selling himself as a good, honest, sweet guy who simply had been terrorized by his ex wife who never appreciated what a great guy he really was. He seemed innocent and kind and helpful. He was great with my daughter and good to me. This is what Rob does-- when there's an audience, he's "on it". And he was aggressively pursuing me. When we purchased our home and got married, I didn't love him at all. I liked and respected him and thought we could have a good future together as companions and parents. The problem was, Rob is none of the things he portrays himself to be. And once I figured that out, ever learning to love him was impossible.

I cheated on you (not true)
I told Rob that I cheated on him with my ex boyfriend Tom. I knew this would cut through his heart. Rob's ex-wife had an affair when they were married and it had traumatized him. I told Rob that I cheated on him and his next wife would cheat on him, too, because he was a horrible husband. Well, that part is true. He is a horrible partner. Unpredictable, volatile, a liar, a hair trigger temper, mean and lazy. But I never cheated on him.

There! Now I knew he'd never come back. I finally poured gasoline on top of my marriage, lit a match, and watched it burn.

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Divorced Moms: Marriage Hell-- One of us is crazy, is it me? My need to validate

From Divorced Moms.

Marriage Hell: One Of Us Is Crazy, Is It Me? My Need To Validate
by Lizzy Smith                     
March 13, 2015                             
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Real names have been changed in this article.

Pretty much every abuser puts his victim down endlessly. In my case, my ex husband, Rob the Great (Alcoholic) was no different. (I call my ex Rob the Great because he constantly told me what a "great guy" he was and how I simply failed to realize it and appreciate him.) During the course of our marriage, he said things like:
  • Without him, I wouldn't have a job. We worked for the same company. He claimed that it was his great power within the company that I got the job to begin with, though I was beyond qualified and experienced for that position and no one in my entire department, including my hiring manager, had even heard of Rob. Add to that, there were strict regulations that prevented him from having any input in hiring for my position and, if he had, he could have been fined, fired, and prosecuted.
  • I worked in the dumbest part of the company. I worked in corporate communications and Rob loved to tell me that everyone knew that everyone in my department was worthless and we never really did anything all day. All we did was look good and go to parties, he said.
  • I couldn't survive live without him. In San Diego, we had a 15-hour power outage. Rob came home that evening drunk and screaming at me that without him, the children and I would be screwed.
  • He was the best dad ever and our children liked him more than they liked me. I was boring and worthless. 
  • He made so much money and was so successful and I could never financially handle life without him.  
  • If I left him, he'd find another girlfriend in a second because there were so many women out there looking for a great guy like him and I would never find another man.
When I was diagnosed with cancer and fled our home and moved to Utah to enter treatment, I received horrible messages. Here's one example:

From: Rob
To: Lizzy
Subject: This is YOU baby!!!!

Everyone in my life hates you and is glad you're gone. Nicky can't believe that you took the girls after I started all over and agreed to raise kids again. The girls love me and miss their dad and I'll tell them it's your fault, baby, that they were taken away from their loving dad. Kelly hates you. She is getting so much more from me now that you're gone. If you think she's being helpful by telling you anything, it's all lies. She's so glad you're gone. When we go to court the room will be filled with everyone supporting me. The landlords are on my side. Even the woman at the Marriott thought you were really weird. So, baby, you just get better and can't wait to see you in court with all my friends ready to testify that I'm a great guy and you're a crazy, lying thieving nutjob. Have a great day!!!!!

A few email exchanges later, I sent Rob an email reminding him about the time in which Kelly told him, sobbing, that if he drank again during the weeks she lived with him, that she would move out and not come back. And then he drank in front of her a few days later and Kelly, true to her word, stopped living with him, decreasing his custody from 50-50 to 90-10.

Rob responded with this: It never happened!! You're a LIAR and Kelly is going to write a letter saying it never happened!!!

Clearly, one of us was crazy. After a while, I started wondering if I was the crazy one and not Rob. I needed validation.

Immediately after getting this email, I contacted our landlords. "I'm sorry to hear that you're on Rob's side. Can you tell me what that means, exactly?" I asked. He responded. "On Rob's side? We don't have enough information to be on either side and we're just the landlords. We hear you are sick and we pray you'll recover soon."

Next, I sent Rob's friend, Ken, a text message. "I hear you plan on going to court to testify on what a great guy Rob is and how crazy I am. You know how much I struggled with Rob's drinking because you and I discussed it. I never lied or exaggerated what was happening in our home. I survived hell, escaped it, and am now sick." Ken texted back: "I would never go to court to say anything bad about you! I know how bad things were. I don't know why Rob would put words in my mouth like that."

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From Divorced Moms: Marriage Hell-- I'm not an alcoholic! It's YOUR fault!

From Divorced Moms.

Marriage Hell: I'm Not An Alcoholic! It's YOUR Fault!
by Lizzy Smith                                      
March 10, 2015
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In September 2011, Rob started his typical screaming/tirade episode at me. And he said something to me that really did shock me for once.
He screamed with his shrill voice, "I talked to my alcohol counselor and I'm NOT AN ALCOHOLIC."

OK, so that did floor me. I was speechless for once. I said, "Well, Rob, if you tell me you're an alcoholic, I'm going to believe you're an alcoholic."

"I ONLY SAID THAT TO TRY AND SAVE THE MARRIAGE!" I'm telling you that NO ONE can scream like Rob.

So we had a couple's counseling session with his alcohol therapist. Except, as usual, Rob didn't show up. Just me. "Rob tells me you say he's not an alcoholic. Well, whatever he is or isn't-- I will tell you he has a drinking problem. It materially changes his personality and it's a big problem in our marriage and it was a huge problem in his last marriage," I told her.

"Wait a minute," she jumped it. "I did NOT tell Rob he isn't an alcoholic. Rob is an alcoholic."

"But he told me you told him that he wasn't," I stammered.

"That's not what I said. Just because he can go days without drinking, or even go on the wagon for a few months, doesn't make him NOT an alcoholic. It makes him a dry alcoholic. It drives everything he does. Every decision he makes."

"But why would he tell me that?" I asked.

"Because alcoholics lie. And Rob is no exception."

Yes, alcoholics do lie. It's the pathology of their disease. I felt so stupid and duped. I knew he lied. He lied to me about his drinking, where he was, what he was doing. He lied to others about everything and I'd bight my tongue so as not to embarrass anyone. He embarrassed me around others when we had had too much to drink.
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Divorced Moms: Marriage Hell... A cancer diagnosis & no reprieve from hubby

From Divorced Moms.

Marriage Hell: A Cancer Diagnosis And No Reprieve From Hubby
by Lizzy Smith                     
March 06, 2015
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Getting diagnosed with cancer sucks. But getting diagnosed with cancer and then having your (alcoholic) husband taunt you sucks even worse.

The month prior to diagnosis Leading up to my diagnosis was not a fun time and I started to know in my gut that something wasn't right. In December, I went on a business trip and worked ridiculous hours. By the time I flew home, I was exhausted beyond belief. The next two days were a Thursday and Friday and I was given comp days to rest up.

After dropping off the kids at school on Thursday morning, I started cleaning the house, doing laundry, unpacking, and balancing our checking account. Rob was home that day under the guise of "working from home" (wink wink, which meant hitting the bars starting at noon). I noticed that Rob overspent on something and I asked him for details. He started SCREAMING at me like only Rob the Great (Alcoholic) can. His scream is this freaky bizarre falsetto/mezzo soprano pitch. And he wrings his hands and nearly jumps up and down. Seriously, unless you see it, you wouldn't even believe it. It is seriously freakish.

"Why are you screaming? I can hear you. I'm right in front of you," I said. In which case he started screaming at me some more. "This is my day off! I want to relax!" I said to him back, "And this is my comp day. I am exhausted. And I am doing things for our home-- things I hate doing, things that must be done, and things that you promised from Day 1 of our relationship that you would take over [like the finances]." 

He then called me a bitch and I stood up and shoved him hard and told him to shut the fuck up. I grabbed my handbag, got in my car and drove around sobbing. Rob and I had a counseling session that afternoon together and I it couldn't come fast enough.

I drove to Costco and went shopping. On my way home, Rob called screaming at me again. I had left my handbag in the shopping cart and it was at the member services department and how could I be so stupid to leave my purse there? I hung up on him and drove back to Costco. By now, I knew something was wrong with me. I was shaking, confused, and scared. And I was angry with Rob-- so angry with myself for staying with this monster for so long. I hated him.

A few hours later, I picked up our daughter at school and she told me that while I was on my business trip, Rob had taken the kids to his oldest daughter's house, who had drug issues. Because of this, Rob and I agreed that the younger children could not go to her home but that they could see her in safe places, like a restaurant or his mom's house. Instead, while I was gone, Rob took the kids to her house and told them both to lie to me about it. I was furious.

Soon after, Rob called to tell me that he wasn't going to our counseling session. "Of course you're not," I said. "You'll have to tell your counselor you're still a drunk and while you're supposed to be at group therapy sessions, you're at the bars and diving."

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Monday, March 16, 2015

Back from South America and no myeloma side effects!

So I'm back from South America! And while this will be a very short blog post because I have a million things to get caught up on, I wanted to report a few quickies.

  • This was one of the best vacations of my entire life. Everyone must add Iguazu Falls (Brazil and Argentina) to their bucket list. Liz Lizette Smith Nielsen's photo.

  • I love seeing interesting critters in their natural habitat, and there are MANY in Iguazu!


  • Punta Del Este, Uruguay is a gem. If you're looking for an exotic, off-the-beaten-track, beach-y vacation, consider this one. It is spectacularly beautiful.
  • It was pretty cool putting one foot in Brazil, one in Argentina, and having the backdrop of Paraguay right behind me.

  • Selfies are fun - especially when on vacation...

  • I had not one single side effect from my myeloma medications. Zero fatigue, no colds, no dry or sore eyes... Nothing. I'm still pondering this one. Because we got back on a Thursday, I took 10 (yes TEN) Dex (40 mg), went straight to Huntsman for treatment from the airport, and then had mind-blowing fatigue on Friday and Saturday. On Saturday, I spend a good chunk of the day lying in bed, wimpering, somewhat sleeping, and totally miserable. My eyes were dry and I wanted to claw them out.
  • Life is exhilarating, or it can be, even when you have debilitating illnesses. Someone recently asked how to combat depression, something many (most?) cancer survivors experience. My answer? Go skydiving. Or at least do something that brings you enormous joy, something totally outside of your comfort zone, something that makes you SCREAM. I did a lot of screaming when we took a boat under the falls in Iguazu. Like, I screamed in that crazy exhilarating I can't think of a single thing outside the moment SCREAM. Or, at least, adopt a dog or go for a walk. Get OUT. FIND JOY. Laugh. As often as you possible can.
  • I missed my daughters like crazy. I just don't think I can take long trips without them again.
  • If I hit the lottery, I'd live out of a suitcase permanently. When is the next trip? Oh, right, 2.5 weeks!
  • It was awesome seeing my aunt and uncle in Uruguay and visiting the home my mother was born and raised in.

  • And those are my random thoughts of the day. I pre-wrote and published many articles via Divorced Moms and Myeloma Crowd while I was away and I'll post a bunch of links shortly, probably tomorrow. Be well! Lizzy

Saturday, March 7, 2015

Greetings from South America

So this will be a fast post because we are awaiting our transport to Iguazu Falls. Our trip has been fabulous. We left from Salt Lake on American Airlines to Dallas to Miami. AA is a horrible airline. We didn´t even get pretzels, not that I need horrible packets of peanuts and pretzels to declare an airline good. At 11pm in Miami, a major international section of the airport that was packed with travelers, the entire airport closed. There was one tiny coffee kiosk opened, that´s it. I couldn´t even purchase a toothbrush or magazine. Nonetheless we arrived in Buenos Aires on time, grabbed a taxi, and made it to my friend Stephani√©´s apartment. I had not seen her for 19 years and it was like no time had passed. We took showers, went to lunch and it was amazing, walked around the neighborhood, and then sat on her deck talking until we were tired and needed to go to sleep. Day 2 we went to the Brazilian embassy, applied for our Visas, and found an exchenage place for money. It is really weird, major banks to exchange money, not even HSBC. We finally got directions in extremely broken English to walk two blocks up, two more blocks to the right, and look for a man on the street corner wearing a suit and no hair on his head. We did, we found a different kind of man, and he took us to a small area where we exchanged dollars for pesos at a far more favorable rate than the √∂fficial 8.5 pesos to the dollar. We got 13 pesos. How this is legal escapes me but it was interesting. We then got on a Hop On Hop Off bus and explored a cemetary where Evita Peron is buried, visited churches, museums, and walked almost 12 miles. We had an amazing dinner of tapas. Day 3 we went to Guacho Country, rode horses, and ate lunch. We sat around the most interesting, well traveled people. I always feel so boring compared to some of these people I meet on my travels. The British couple next to us were wrapping up a 2 month tour of Asia and South America. An American young couple next to us were spending two weeks in South America, going home for a few weeks, then going to Russia, Ukraine and China when they got back. Day 4 we flew from Buenos Aires to Iguazu, Argentina. We arrived early out our beautiful hotel in Iguazu, a beautiful tiny town just miles from the Falls entrance. We slept at the pool, then took a taxi to Paraguay, where we experienced horrific traffic that I haven´t seen since hanging out at the Tijuana border crossing. Ciudad del Este, Paraguay is a sprawling, filthy city but the experience was amazing. Today we are heading to the Arentinian side of the Falls. Stay tuned! I must run but will post photos later. Vacations are an amazing respite from life. I highly recommend them. Hard to believe that once we get home, just a few weeks later and we are heading out to Central America. Life is about living, life is now. Why not? Cheers, dearest readers, Lizzy

Sunday, March 1, 2015

Life is normal. Until it's not.

Last week, my good friend "Zoe" went to work, came home, fed the kids, cleaned the house a bit, got in an argument with her hubby and went to bed. The next day, her stomach was hurting something awful. She went to the ER and was admitted. She had a huge mass on her ovary, was running a fever, and her blood work came back positive for the gene that expresses with ovarian cancer. She got her official diagnosis that very night. Next up were more tests the next day to find out the type, staging, and best course of treatment.

The next day, she got her PT-scan and was transferred to a cancer hospital via ambulance. A biopsy ensued, which came back inconclusive. A reason to celebrate? Not so fast... Chemo was starting up the next day.

Last night, I got a text from our mutual friend. Zoe was not doing well, was heading into emergency surgery. The cancer had eaten away a huge part of her bowels and there was an enormous mass. They brought her to full consciousness just long enough to ask her if she was a "Do Not Resuscitate" and, if she was, she needed to sign paper work. She said no. They put her back under for surgery. Her odds of making it through surgery ok were about 50-50. How can this be possible? Just days before, she was a normal person with a normal life, cancer and big changes not even on the horizon! But it was true, all to horrible, awfully true.

My friend and I cried. She was at the hospital; I was too far away to be there. At 2:15 AM I got a text. Zoe was still in surgery but the doctor had come out to talk to the family. Zoe was doing really well. They took out a huge part of her bowel and she was getting a full colostomy. They had also removed her cancerous tumor. She would have two bags for the rest of her life due to the colostomy but by the end of surgery, she would be alive. After recovery, she would need to start chemo for her primary ovarian cancer. Not an easy road but fighting (and winning) was now possible. At 2:15 AM after reading the text, I sat up and bed and cried. A mixture of hatred towards cancer, and thanking God for letting her live so she could fight like hell, get well, and get back to the business of life.

And the lesson learned through all of this? Life is normal. Until it's not. And when that moment comes is anyone's guess. The banality of bad news. Life changing events rarely come with warnings. We are doing life's ordinary stuff when everything changes in one instant. You know, we're walking the dog, putting dishes away, going through emails at work, sleeping... And life as we know it ends. Just like that. No fanfare. And how do we cope? Who knows.

And that's why I've learned to live. Live BIG and GRAND as often as I can. As often as my health and treatments allow, and responsibilities to children, self, family and loved ones.

And I pray and hope for Zoe. One more warrior to cheer on. Please, God, let her be ok.

Want to lose your spousal support? Have your boyfriend move in! Even if you (try) to be sneaky, this one can be a killer

My latest story via Divorced Moms. True story, so ladies (and men, if you fall into this category): Be Ware. While I'm in Argentina, I've picked a few of my most popular blog posts and edited them for Divorced Moms. They all have to do with true stories of my life with an alcoholic. So tomorrow I depart. So excited. Until I'm back, be well, strong, and happy.

Love, Lizzy

A Fast Way To Lose Your Spousal Support: Live With Your Boyfriend
by Lizzy Smith                    
March 01, 2015
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Fotolia_77020610_XS.jpgGuess what ladies? If you are receiving spousal support and your boyfriend moves in with you, there is a very good chance that your ex can go to court and have the dollar amount you're receiving drastically reduced or stopped altogether. So if you are cohabitating in a mutually-exclusive, sexual relationship, just know that it's a very real possibility.

Which brings me to my own story of when my then-husband hired a private investigator to spy on his ex-wife.

One thing that really got under Rob's skin was the spousal support he was paying to his ex-wife. When Rob's youngest daughter decided she would no longer live with us because Rob refused to stop drinking around her and it was obvious that his child support would be increasing, we consulted with an attorney. When that attorney saw what Rob was paying in spousal support, he was gravely concerned. He told Rob that he wouldn't want to risk going to court to revisit anything because a judge would likely increase her spousal support significantly. He didn't think that Rob was paying nearly enough to his ex wife as it was. He was sick about the amount of money he was shelling out each month. He thought she should get a better job and stop being such a sponge on him.

Rob kept telling me that the second his ex remarried or started living with someone, he would file to have spousal support stopped.

One day I was at work and I got a phone call from Rob. He was positively giddy. "Guess what?" he said. He could hardly contain himself. "She has a new boyfriend and she moved him into her house!"

"Really? How do you know?" I asked.

His oldest daughter told him. "Whoohooo, baby, I'm filing papers to stop spousal support. Oh yeah!" He was literally whooping and hollering.

So Rob hired an attorney. At one of those meetings, I got a call from the two of them. "We need to hire a private investigator to stake out her house to prove her boyfriend is living with her."

"No," I said emphatically. "How much is that going to cost?"

The attorney thought about $2,500. "It will take a year or more to recoup the costs, if a judge cancels support, of the private investigator, attorney fees, and court costs. I say no. Would she really lie about her boyfriend living in her home?"

"Hell yes!" Rob said. "She'll lie about anything to get my money!"

"I say no," I repeated. But I was already so completely tired of Rob blaming me for anything and everything that went awry with his kids or ex-wife that I knew better than making that final decision. "But do whatever you need to do."

And so Rob hired a private investigator and shelled out $2,500 to get photos of the boyfriend taking trash out to the dumpster, opening the garage door, and leaving his car parked outside the home over night.

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