Lizzy in the news!

Interview: NBC News Salt Lake City

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

Article: Huffington Post!

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

The 10 Best Things About Divorce

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

Print Article

Daly and Newton via Getty Images

                            

By Lizzy Smith for DivorcedMoms.com

 

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

 

Radio Program: Cure Panel Talk Radio

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

 

 

Two notable items I'd like to recap are:

 

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

 

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

 

All interesting information!

Divorced Moms column: Almost Snapping: Brought to the Brink of the Unthinkable

Latest Divorced Moms column is out!

Almost Snapping: Brought to the Brink of the Unthinkable

By Lizzy Smith, Contributor - February 27, 2014

Years ago, I read about a woman who snapped. By all accounts, she was a good person. She had no prior record. One day, she found out her husband was cheating on her and she confronted him. They got in a huge argument and, with a child in the car, she ran him over, killing him.

I never understood how someone could ever get so angry that they would do the unthinkable. Things had to be really bad and, honestly, nothing had ever really been that bad for me. Until I married “Rob."

While I never resorted to physical violence, I was once pushed to that brink. It was the lowest point of my marriage. It was the moment when I stopped liking my husband. It was my point of no return. I remember it all too well.

The day I almost snapped was on a Sunday over President’s weekend. I was home with our two young daughters while my husband went to a Charger’s football game with his brother. We ended up getting into a heated argument via text over his refusal to help around the house. Keep reading...

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

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

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

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

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

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

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

 

...And on a side note:

 

Huffington Post

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

Happy Hump Day!

The power of hope

Tonight we went to my aunt and uncle's home for dinner. After dinner, my uncle, Larry, told us a story of our ancestors and their trek across the country to get to Utah. Larry is quite the Mormon historian and I love hearing his stories. He makes it all so real.

Anyway, the story is of two sisters who heard the Mormon message from missionaries while they were living in England. I can't remember the year-- maybe 1832? Their names were Julie and Emily and they decided to come to America and set out for Utah. The trip to get from England to New York took six weeks. By the time they arrived in New York, like most others on that journey, they were already somewhat malnourished and exhausted. These two women, ages 20 and 22, joined up with a single mother and her five children. They loaded all of their belongings onto a single handcart and started pushing their way from Illinois to Salt Lake City-- some 1600 miles. On foot. Not in good physical shape. With terrible shoes and not enough food. The blisters on their hands and feet. No sunscreen. I can't even fathom. Along the way, they encountered Indians that wanted to kill them, rattlesnakes, disease, wolves, and, it gets far worse, terrible storms. By the time they got to Wyoming, some 100 of the 500 in their handcart company had died. And that was the easy part-- in Wyoming they encountered a horrific blizzard. Alone, in the mountains-- no food, shelter, adequate clothing, medication. Nothing.

At one point, Julie sat in the snow and refused to get up. She wanted to die. Many of those on that journey no longer had shoes or, if they did, wrapped up the remains of their shoes with anything they could find. Many were literally starving to death. At this point, they gave up hope and waited for death with open arms. Anything to stop the suffering.

...And then they saw an angel. He wasn't really an angel but he must have looked like one. It was a man, the first of several more, who had left Salt Lake City on a mission to rescue the handcart company. Brigham Young had gotten word that the handcart company had left Illinois far too late in the summer and were stranded in Wyoming with no food or supplies. He sent a rescue team. When this angel found Julie in the snow, dying, he handed her an onion. She got off the ground and found an older man, shivering by a fire, and gave him the onion. He ate it and it saved his life. He ended up getting up and making the rest of the journey. So did Julie and Emily. (I look at my two daughters, Morgan and Siena. Would they give a dying man an onion when they, themselves, were starving, too? I think they would. My daughters are the most thoughtful and selfless girls. But I digress. Back to the story...)

While the rescue team arrived, it's not like all 400 survivors had it made. They still had to get up and walk-- keep moving until they reached Salt Lake. None of us can ever imagine how difficult it must have been.

And that's the point of tonight's blog. Hope. Hope is so powerful. When the pioneers had given up hope, they could move no more. They were done. And when the rescue team arrived, they still have to find just enough energy to move forward. But this time they had something they didn't before-- hope.

That's how my battle with myeloma can be summed up. I have hope. And faith. I will win this battle. Because as long as I have energy, support, medications, great doctors, and there are more drugs in the pipeline, I have the WILL to win this battle. Hope is so powerful. It's an amazing feeling. It gives me tenacity, resilience, and strength.

My ancestors were strong, amazing, faithful people. I look to their example as I continue every day. I still visit my grandparents' gravesite often. I look to their examples-- examples I remember well growing up. They set the stage for the strength I have in overcoming my challenges-- whether they be my cancer battle, making it through my abusive marriage, and never caving during my divorce. When I was in transplant, even in the hardest parts of my treatment, those traits helped me every single time I needed to drag myself out of bed.

And even still today-- when I feel tired, weak and scared, I come back to that word. Hope.

Multiple Myeloma Awareness Month (March) is just around the corner

March is Multiple Myeloma Awareness Month. I was planning on writing a post about this topic and I certainly will be blogging it in March. But my dear fellow Myeloma Warrior, Gary, wrote an excellent article about it already. So I'll re-post (with permission, of course) his instead. Thanks, Gary! You're a true trailblazer and my hero. (And thanks for the shout-out, by the way.)

When Myeloma Awareness Month Falls Every March - DOES ANYONE HEAR US??

02/21/2014

2 Comments

 

March is Multiple Myeloma Awareness month, but how does a disease which effects just 20,000 people in 315,000,000 or just .0063 percent of the people in the USA annually, get any attention or awareness?  Breast cancer has 232,340 newly diagnosed annually or 11 times more cases but just 2 times more deaths. Everyone knows about breast cancer and should, but few if anyone other than those effected by myeloma have heard of multiple myeloma. It is therefore really important we work together, or we will not be heard. 


We have some outstanding organizations that have helped to create awareness, raise funds, and spearhead drug development. Organizations like the IMF (International Myeloma Foundation), MMRF (Multiple Myeloma Research Foundation), and LLS (Leukemia & Lymphoma Society), and they do the best they can to get the word out, however somehow the average life expectancy remains at just 4 years for the third straight year in a row based on the statistics provided by the National Cancer Institute. In March of 2012, I wrote an article headlined "Why Do People Die From Multiple Myeloma? Lack of Awareness!!!", where I was trying to understand how multiple myeloma specialists had patient survival of 10 years of more but the average for all patients remains at just 4 years. To read the article CLICK HERE.  
 
We also have a number of selfless, generous patient advocates, which include Mike Katz, Pat Killingsworth, Myeloma, Jennifer Ahlstrom, Lizzy Smith, Cynthia Chmielewski, Jack Aiello, Suzierose, Matt Goldman, Nick Van Dyk, Danny Parker, Cure Talk and Beacon contributors,  et. al, who work tirelessly to get the word out and raise awareness, all while fighting this disease.  We recently got the Tom Brokaw Bump (not a new dance) from his selfless and brave announcement of his condition.  Google searches and views of my site doubled and tripled the week of Tom's announcement, but are now back to previous levels.  It remains up to the selfless and knowledgeable myeloma advocates and myeloma organizations to continue their outreach efforts because each of these advocates know that a knowledgeable myeloma patient  who has a MYELOMA SPECIALIST on their team will outlive the average life expectancy by a factor of 2 to 4, or 8 to 16 years vs. the current average of 4 years.  And this 6 years of extra life for the 80,000 myeloma patients represent 480,000 years of life, and another 120,000 years of life with each new year of newly diagnosed.    

I question some of the recent headlines in the news lately, but only because I think they need to add some fine print.  Some of the headlines are:

Tom Brokaw's Multiple Myeloma Cancer and His Hopeful Future ...

Brokaw's multiple myeloma called incurable but treatable - USA Today

Tom Brokaw Diagnosed With Cancer, Prognosis Encouraging

Tom Brokaw reveals cancer diagnosis; doctors are 'optimistic' - CNN ...
These are all accurate, but only with some qualifiers.  For reasons I have yet to understand completely, the prognosis for the average patient is for them to live an average of just 4 years with 20% dying in the first year, and this is not too hopeful, encouraging, and optimistic.   The qualifying fine print should therefore read, the future is hopeful, encouraging, and optimistic if Tom has a skilled multiple myeloma specialist on his team, (he does). He goes to a facility that does genetic testing and is extensively involved in clinical trials (he is), is at a facility that tracts survival statistics and knows the results for every type of treatment in use at their facility (they do), is a low risk case which is 85% of cases based on genetic testing (I have no idea what his risk factors are).  And, finally about 25% to 40% of low risk patients will be effectively cured using currently approved drug combination and a protocol including induction, transplant, consolidation, and then maintenance. 


One way for you to help with Myeloma awareness is by getting this message out to your facebook, twitter or other social media contacts.  You may not know someone with myeloma but your contacts might, and you may just help to SAVE LIFE!  Just Click the Twitter and Facebook icons at the end of this post.


The Symptoms of Multiple Myeloma can include:

• Bone pain and skeletal fractures, including compression fractures of the spine, which can cause severe pain, particularly in the back. A backache that lasts for months can be a signal that multiple myeloma is affecting bones in the spine and/or the ribs.
• Frequent infections, especially bacterial infections of the respiratory and urinary tracts, which occur because the immune system is weakened.
• Fatigue, weight loss, and general discomfort caused by anemia (insufficient red blood cells).
• Nausea, vomiting, altered mental state, depression, and headache, caused by abnormally high calcium levels in the blood (hypercalcemia).
• Loss of kidney function, leading to fatigue, buildup of fluid in the lower limbs, nausea, and vomiting.
• Bruising, rashes, nosebleeds, vision loss, headache, dizziness, and peripheral neuropathy (numbness, tingling, and burning pain in the extremities) caused by blood that has thickened (a condition called hyperviscosity) due to high levels of protein.
• Shooting pains in the arms and legs caused by a tumor in the spinal column pressing on nerves.

In about one-third of patients, multiple myeloma is detected before symptoms appear through routine blood tests that show elevated levels of immunoglobulin proteins.

Good luck and may God Bless your Cancer Journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

Life is today; life is now - and traveling with Myeloma (or any cancer) is (in my opinion) very important

I'm having a Dex day and I'm unable to sleep. It's pushing 2:00AM and here I am, writing. On my Dex days and the day after, I take Ambien to help me sleep. Tonight, that isn't working. At least I'm not Ambien shopping this time (yet) but I am eating cookies (bad).

Earlier today, William asked me why I took so many grand trips. I had to think about it to give him an articulate and well-thought answer. "Because life is today; life is now. I hope I have many, many years ahead of me. But who knows? Who knows how much time any of us have? And as long as I can do this, it's important to me. I want to see and experience everything-- from my Utah back yard to Europe and everything in between. It matters. I want my daughters to be raised not remembering the first time they were on a plane, or went to another country, or to their first ballet, Broadway play, opera, symphony, good cinema, or museum. I want it to simply be part of who they are as people. I want them to know that the world is big. People live very different lives. The world is diverse and they should appreciate it and explore it.

I think my answer resonated because a few hours, we all had finalized our trip to Italy-Greece-Turkey and Croatia, with the girls and I stay behind an additional two weeks to visit Northern Italy and Switzerland. Done deal!

I grew up with an intense interest in life outside of California, Nevada, Utah, Washington and Oregon. For whatever reason, I was most interested in New York City (which I visited the first time when I was in college and then countless times since then) and Moscow. I had such a desire to visit Russia that I was almost obsessed with it. I had to see the Kremlin and GUM and the Stalin area buildings. I wanted to see the Bolshoi. I wanted to visit Leningrad (now St Petersburg) and visit the Hermitage, and Peterhoff, and Marinski Theatre. In eighth grade, I started pulling books off the shelf about Russian history and culture. I couldn't read enough about the larger than life characters: Ivan the Terrible, Catherine the Great (my hero), the Romanoff Family, Peter the Great (a nut, but a genius), Stalin (the Anti Christ, more evil than Hitler), Lenin, Nakita Kruschev, Dostoevsky (who I read endlessly in college, or so it seemed-- hello Crime & Punishment three times!). Tchakovski. Nitche. So many that I could keep writing and writing.

I went to Russia the first time on vacation in July 1999. White Knights. It was amazing. We were in St Petersburg. Two years later, we went back to Moscow, Vilikiy Novgorod, and Borovhichi. We were there for a week to pick up Morgan. I'm not sure I put the camera/camcorder down for more than a few minutes. We went to the original kremlin in Novgorod. It was a beautiful city. The country road from Moscow to St Petersburg was fascinating. I cried when I left Russia. I wanted to stay longer and explore more. I went with Bob on my third trip for a week. Yekaterinburg-- on the border of the Ural mountains. We went to the area where we could put one foot in Europe and the other in Asia. We stumbled upon one story after the next that carried mostly Cerruti, Chanel, Prada and Dior. And lot of jewels. We had the most amazing mushroom soup ever. We saw the cathedral that was erected over the home where the Romanoff family was executed. We saw more churches. We ate great food. We flew home.

Latest Divorced Moms column: The 10 Best Things About Getting Divorced

My latest Divorced Moms column is out!

The 10 Best Things About Getting Divorced

By Lizzy Smith, Contributor - February 21, 2014

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

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

1. It ended
Winston Churchill said “If you’re going thru hell, keep going.” This quote ran through my mind countless times during my marriage. In fact, I once posted it on my Facebook page. None of my friends really knew what I meant by it (I hid the abuse going on in my home from almost everyone) but I did. I was living in Hell and I knew I needed to keep moving or I would stay right there. It’s been a tough battle to finalize the divorce but at least it’s over. I no longer need to live in a constant battle zone.

Keep reading...

Millenium (makers of Velcade) class last night

Last night, I went to a "Learn About Myeloma" class at the City Center Marriott, which was hosted by Millenium, the makers of Velcade. Velcade is the drug that I get once a week intravenously through my port. Velcade is targeted chemo for myeloma cells, which is the future of cancer treatment. Not all cancers have targeted therapies. Velcade targets just myeloma cells, unlike many other chemo drugs, which destroys all cells (which is why you lose your hair). So we warriors typically tolerate Velcade better than a harsher drug.

At the class, there were probably 50 people attending, from what I could tell all were either patients or their caregivers. I sat at a table with two women from Kansas City who were there to give a portion of the presentation, and another woman who looked to be about 75 years old from Salt Lake City. Prior to the class, we chatted. The two women were awesome. The older woman was a myeloma survivor coming up on six years. She has only achieved remission for a few months but, thanks to Velcade, is doing quite well. They are managing her disease. She lost her husband to cancer and was feeling healthy and well when they discovered abnormalities in routine blood work. Getting her cancer diagnosis was a shock. She was quite scared, angry and devastated, as was her entire family. Hearing the words "you have cancer" is always a life changing experience. The other woman discovered she had myeloma when she got a physical prior to going on a mission for the Mormon church. I always love hearing from other warriors. I have yet to meet a single cancer survivor who isn't amazing. Cancer changes you for the better, though it's a difficult experience.

The keynote speaker was a myeloma expert from City of Hope in Los Angeles. She talked about the drug Velcade and also future therapies in the pipeline for approval. There were also some promising clinical trials, though I'm not eligible to participate in any of them because I'm in remission, though I have at least eight more months of maintenance therapy, which this week is kicking my ass with fatigue.

After the class, the woman from Salt Lake City sitting next to me asked me many questions about my doctors and team of nurses at Huntsman. She needs to find a new oncologist. She probably also needs to start chemo. She was in tears as she said, "I said I would never do chemo. I am so afraid."

"I wouldn't wish chemo on anyone, trust me," I told her. "That said, I hate to say it but it's not that bad."

We talked some more and she couldn't thank me enough. Sometimes I feel like God puts us in other people's paths for a reason. I think I was needed at last night's meeting-- far more for the women I sat next to than for anything I learned last night.

Afterwards, I talked to Millenium employees who hosted the event and offered to give presentations at other seminars. They seemed interested and took my contact info. We also talked about the www.myelomacrowd.org website that I helped Jenny launch.

I hate cancer. I hate myeloma. But I love the people I have met along the way. I mean, I absolutely love them.

Road Tripping with Myeloma

In my prior life (pre Multiple Myeloma diagnosis), I did not enjoy driving anywhere. If it took more than a few hours, it was a flight, not a car. Driving took too much time. Come to think of it, most everything I did was a race-- a race to complete a task. And that included vacations. Hurry up, get on plane, get to hotel, enjoy vacation, get to airport, get home, rush off to the grocery store to re-stock, unpack, to laundry, go to bed, get back to work.

Now that I don't have those same demands or that same mindset, road trips can be cool. I still can't say I enjoy driving. I always end up at my destination feeling "off"-- a little motion sick, buzzy and drained. That said, I do enjoy exploring.

So this weekend, Morgan had a soccer tournament in Mesquite, Nevada. I was really looking forward to the weekend. Getting away, being social, something different. So I got my weekly Velcade injection on Wednesday instead of Friday, and we took off on Thursday.

Well I felt awful the whole weekend. I don't even know how we made it to Mesquite in one piece without my driving off the road. Kind of scary now that I think about it. Fatigue was beyond intense- mental and physical. Was it the fact that I got Velcade injections just five days apart as opposed to seven? We got to Mesquite and instead of heading off to a soccer game, I sent Morgan off with a teammate and fell asleep by five o'clock. I woke up the next morning. We went to a soccer game and I realized that I still felt awful. While all the kids were swimming, I was sleeping. Suffice it to say that I spent the entire weekend dragging myself out of bed. It was quite a drag.

Our hotel in Mesquite was quite possibly the most disgusting hotel I've stayed in as an adult. It was maybe not quite up to Motel 6 standards. The comforters on the bed consisted of a sheet, a paper thin cheap hotel blanket, followed by another sheet. The pool had so much chlorine in it that I couldn't even sit outside because the smell made me gag. When the girls came from the pool, I made them get in the shower immediately. The casino portion of the property smelled of cigarettes and urine. Going into the casino to find a restaurant made me physically gag. I had my nose covered up with my hand and I seriously thought I was going to throw up.

One funny story. Siena and I were drifting off to sleep and I just felt this need to tell her how much I loved her. I said, "You are so smart, pretty and funny. I love you so much that it hurts some time. Being your mom is the best thing ever." And I started crying. It was this beautiful touching moment. Or so I thought. Siena grabbed my hand and pushed it away. "I'm sleep. Stop it!!" She didn't even remember it the next day. Oh well.

We left a day early.


...But on our way back, there was no need to rush. As we were driving, we stopped along the way. One place we just discovered was Kolob Canyon. Wow-- it was breathtaking. Stunning. Absolutely inspiring. Another reminder to me that God exists.


We got home, I felt carsick, but we made dinner and watched the Olympics. William and Morgan made kettle corn by scratch. We went to bed. I think I might feel a bit more normal today, though it's a bit early to tell. Since it's a holiday, we're going to hit up a movie.

The point is, borrowing words from my fellow Myeloma Warrior, Pat, "Even we seasoned Myeloma survivors have bad days." What isn't so fun is that anticipating off days is nearly impossible. Every thing I do or plan, I always have that thought in the back of my head: "What if I'm fatigued?" Sigh. Oh well. I'm alive. I'll get through it.

Divorced Moms column is out! "How Getting Sick Helped This Divorced Mom Live Again"

Latest Divorced Moms column is out! Enjoy.

How Getting Sick Helped This Divorced Mom Live Again                      

By Lizzy Smith, Contributor - February 15, 2014                

I  am a cancer survivor. I was diagnosed with multiple myeloma in January 2012 and immediately upon diagnosis, I left my alcoholic husband and moved two states away to enter treatment. The life that I once knew (career, family, home, dogs, San Diego) was over in an instant.

Prior to diagnosis, I realize how my priorities were all wrong. I spent the majority of my time on things that weren’t important at all. But it’s amazing how radically that changed once I knew I was sick and fighting for my life.

First, I became fearless. Other than my disease, I am afraid of nothing and no one else. It took a while for that concept to sink in, but sink in it did. Loud and powerfully. In the midst of massive chemo and emotional trauma associated with fighting my disease, I was also going through a horrific divorce. While it’s been over two years since I left him, the drama from this man has not stopped. The difference is that I simply don’t care anymore.

Keep reading...

And on to a happier note... sharing my story of faith, survivorship, healing and hope

 

 

A VERY BIG national magazine with a HUGE readership contacted me! They are considering running an article that I submitted to them awhile back. I won't say which pub it is because I don't want to jinx anything. But they asked me for some very specific photos. So today I rushed off and did a photo shoot. I had never done a shoot quite like that one and it was very fun! Tomorrow I'll be sending them many of the photos they've requested. I hope they like them and I hope I make the cut!! If not, I'll keep plugging away to see where and how I can share my story elsewhere. I think I have a powerful story to share-- one of hope, resilience, faith, survivorship, healing-- all done with a lot of panic and a lot of humor, too. Brave, so many people call me. I call myself "a fighter; what are the options?"

Anyhow, loved the photo shoot. Loved writing the article. Let's hope that the combo is a good one! I'll keep you posted as I know more. Until then, here are some fun photos, which if they're not picked up by this pub, I'll certainly use elsewhere.

Besides, I'm writing an article about Obamacare that I'll be shopping around. I'll I'm waiting for his a call back from Senator Hatch's office for comment. Wish me luck it gets published somewhere.

My life's passion is bringing certain issues to the debate table. The only way I can do that is share my story and hope it resonates on some level. Health, healing, hope. That's what it all boils down to for me. That's where I believe I can make a difference and if my story moves that debate along, so be it.

Fun times.

All the best, my fearless readers. I love you guys! You keep me going-- all 15,000 of you. When I hit 20,000 readers, that's when I'm going to start turning my favorite posts into a book.

 

Tom Brokaw has multiple myeloma - Never doubt the tough battle of a cancer survivor

Tom Brokaw announced today that he is fighting multiple myeloma. It is a tough disease. Yes, it is treatable. No, it is not curable. Much progress has been made over the past several years. But it is a long and hard fight. By the time I'm done with my initial protocol, it will be almost three years from diagnosis.

Which brings me to today's post. Never, ever doubt or second guess a cancer warrior's battle, struggle, strength or courage.

When I was diagnosed with cancer on January 6, 2012 and left my husband just a week later, he did everything he could to threaten, bully, ridicule and taunt me. I'm sharing the email below, which Rob sent to his entire family and then forwarded to me. It was just 13 days after I was told "you have cancer."

From: Rob
To: peggy, Kathy, chris
Sent: Thursday, January 19, 2012

Liz has Myeloma (isolated) and treatable, not multiple. I have way more exposure to help her. Liz, based on my emails is now taking care of business and understanding that she really f'd herself. One day at a time... I am to Work, train for a marathon, go to a family retreat, run a marathon, and go to Costa Rica. And I will continue to kick Utah Butt. Take care and thanks.

I suppose that leaving an alcoholic just days after being told that I had cancer meant that I fucked myself by leaving him. ?? This just makes me so ... Numb. Sad. Horrified. So I'm going to make this into something good. I'll let this email be the catalyst for educating my readers on myeloma.

Myeloma and Multiple Myeloma are one and the same thing. There is no such thing as "Myeloma (isolated)." I would actually understand that the lay person not know this. Except I actually told Rob specifically that I had a highly aggressive form of myeloma and I was terrified. Not only did I tell him this, but I handed him a copy of the diagnosis letter from my oncologist. It was a very long letter, very detailed, and extremely frightening. When I read the letter, I almost lost it. I had taken the girls to a swimming pool with a stack of mail to read while I waited for them. There I was in the bleachers, opening up mail when I came upon that letter. I started sobbing right there in front of confused onlookers. It wasn't pretty.

 

An excellent view of my port on the left side of my chest. That port provides access to intravenous drugs of Velcade and Aridia that I get at clinic as part of my two year maintenance therapy. I used to hate it because it's ugly but I don't anymore. I love it and, heck, as long as William thinks it's sexy, that's all that matters anyway. I rock it, love it, never try to hide it. It's my mark of courage.

Let me state for the record that any cancer diagnosis is hell. It is scary and deadly. Never take anyone's battle with cancer lightly or brush it off as "no big deal." All cancer is a HUGE deal. And my myeloma was not only a VERY BIG DEAL, but it was highly aggressive and very advanced. At diagnosis, I was a stage III. I had 95% cancer cells in my bone marrow with some of the most threatening chromosomal abnormalities to boot. Treating me, according to my oncologist, was going to be very tricky and difficult. Each cancer is different. Each myeloma is different. But, I assure you, there is no such thing as a myeloma that's just, well, a snap and simple.

We cancer warriors are brave, amazing, resilient people We have to be. Ours is a tough battle. I'll win it. I have incredibly amazing people around me. I am blessed. But this is not an easy struggle. Be  kind to every single person with cancer. It's just the right thing to do. No exceptions.

Thanks for reading. God bless the cancer community.

Yekaterinburg Adoption: Between trips 1 & 2 The Personal Side (aka Hell at Home)

As I've written about on this blog, Rob and I adopted our daughter, Siena, from Yekaterinburg, Russia in 2008. To complete the adoption, we had to make three trips to Yekaterinburg. The length between trips 1 and 2 was 10 endlessly long months. Between those two trips, I had to do an insane amount of paperwork and I almost gave up. Rob kept me going and focused. Eye on the prize.

The paper chase was one part of that story, which I've already covered. The personal side of the story is entirely another. What was going on in our home and in our relationship was not good.

After our trip home from our first trip to Russia, we tried to assimilate into our new life. We had a new home, Morgan (who was in second grade), and Nicole (Bob's 17 year old daughter who was a senior in high school). My cousin, Sue, had moved in with us.

In November, Nicole and Rob got in a huge fight and Rob kicked her out of our home. Nicole went to live with her mother. Rob and Kalie (Rob's other daughter who was 14 years old) were beginning to speak a little after a long dry spell. Kalie actually boycotted our wedding because Rob and Kalie had gotten in a huge argument just before the wedding. (Are we seeing a trend here?)

One night, Rob went to Kalie's volleyball game. I didn't go. But Rob came home from that game giddy with excitement. Apparently, Nicole (who Rob was not speaking to at the time) and her boyfriend, Tristan, were at the game. So was Terri, Rob's ex wife. During the game, Nicole got upset at something and stormed out of the building where the volleyball game was taking place. Terri chased after Nicole and Rob saw it all happen. How any of this was funny or something to be happy or excited about, I have no idea. It was bizarre.



Over Christmas, Rob, Morgan, Kalie and I all flew to Utah. While I was at my parent's house, Rob, Kalie and Morgan were at Rob's sister's house in Ogden. They called me and said they had just purchased a lab puppy. My heart fell. I love dogs but it was one more responsibility that I just wasn't prepared for. They had already named the puppy Bear. Of course when I saw Bear, I fell in love. Kalie flew home with the dog and when we got home, the raising of that puppy fell almost solely on my shoulders. Rob, who promised he would pitch in, didn't. It was a trend that continued throughout our marriage.


Rob set up this photo of the puppies at his sister's house. Not sure how this was funny coming from an alcoholic.

When Rob and I combined our homes, he promised to handle the finances and bill pay. He asked that I start off with it just for a few months and he would take over. I begged, asked, pleaded with him over the years we were together to please take over that responsibility. It never happened. I used to send him meeting notices so he would block time off in the evenings to go over finances. He'd accept all the meeting requests but, big surprise, usually came home drunk on those nights. He never took over the bill pay.


We had a beautiful view and yard but we never could enjoy it. I took care of the bill pay, kids, upkeep of the home, cooking and cleaning and laundry, managing our vacation home. I could not handle the yard, too. Even though we had a gardener and a pool cleaner, the back yard always smelled of dog poop. Once a month, I cleaned that up, too. All while Rob did almost nothing around the house. He would come home from work after too many drinks and either sit on the couch and watch TV or go to bed early. I was exhausted and overworked. It started off that way and it never ended. Interestingly enough, this was the identical problem in his first marriage, too. Old habits die hard.

He also promised to take over cleaning the pool and upkeep. We hired a pool guy but Rob promised that would just be for the first couple of months. Rob never cleaned the pool once when we were together.

Rob never cleaned the yard either. I hired a gardener. His promises that we would save money and get rid of the gardener and pool guy because he'd do it never materialized.

Our garage was a disaster. I literally couldn't walk from the garage door to the door leading into the house. I asked him many times to help me clean out the garage. One day, Rob took Kalie and Morgan out for coffee and I started cleaning out the garage. When Rob came home and found me cleaning out the garage, he started screaming at me. "I wanted a nice quiet Sunday at home and you're making me feel guilty!" he shouted.

His bizarre behavior and screaming fits became more and more common. His confession that he was an alcoholic and would get help provided me with just enough guilt in my brain that I needed to stay with him and help him get well.

One day he screamed at me and I had had enough. I purchased plane tickets for Morgan and me and we flew to Utah to visit my parents for the weekend. I didn't even tell Rob where we were going.

Nicole moved back in with us a few months later. Her behavior at her mom's house wasn't acceptable to her and so we allowed her home. It was one more layer to the insanity that I was living with. Drugs and alcohol and screaming. I hated it.

...But every time I was ready to end the relationship, Rob would be just contrite and apologetic enough that I would feel hope and relief. I was lazy and tired. I didn't know what to do. I was so financially strapped in our new home and paying off Rob's bills that I didn't know where to go or what to do. I was so trapped. In January, just a few months after our wedding, I was ready end the marriage but, instead, Rob did a huge mea culpa, one of hundreds, and instead of leaving him, we went to Catalina for the weekend. After that trip, we had a period of peace for several weeks. Maybe he was really going to change, I thought. As always, it was a very short lived promise.



And then there was Todd. Like clockwork, I'd hear from him every month. And every time I did, I wanted to see him and be with him more than I wanted to breathe. I even set up a few dates with Todd and then would cancel at the last minute. I was afraid that if I saw Todd, I would be incapable of not being with him and I just couldn't do it.

During this time, it also became apparent that my job at HSBC was coming to a close. The writing was on the wall. With the slowing economy, I started hearing rumors that the company would be eliminating positions and probably my job wouldn't survive. Rob encouraged me to start looking for another job. And so I did.

Just before we got travel dates for our second trip to Yekaterinburg, I scored interviews with two companies: Sempra Energy and CareFusion. I ended up getting job offers at both companies. Same salaries, almost identical bonus structure, same title. I didn't know which of the two jobs to accept. Rob talked me into accepting Sempra. He was working for that company, too, and he convinced me that it was the best company ever. Despite my better judgment and gut instinct, I accepted the job at Sempra Energy. I negotiated a start date for late July, which would give me time to complete the adoption. Because we finally got travel dates for our second trip to Russia! A bit of exciting news.

A new job, a new child, a trip.

And a life with a raging, highly functioning alcoholic. My head was spinning.

One thing that did go very well with Rob was vacations. When we were getting ready to go somewhere, Rob was a happy drunk. So we were both looking forward to our trip. Rob contacted a Moscow travel guide and we were going to spend time exploring Moscow, then spend several days in Yekaterinburg and fly home. Rob's dad was excited to see his new granddaughter and we were talking to his mom, Peggy, about going with me on the third trip to bring Siena home. My parents were considering going on the third trip, too. It was a whirlwind. I just wanted to get home with our new daughter so we could start trying to come up with a more "normal" schedule. Maybe if all the stress of the adoption was behind us, our relationship would normalize. Rob blamed everything on stress and I hoped he was right. Less stress, better Rob, better relationship?

And so it was that in early June, Rob and I were heading to the airport in San Diego to catch our flight to Moscow.

Upcoming Cure Panel - Cure vs Control for Myeloma Patients

An excellent Cure Panel radio program is coming up and I won't miss it! I'm linking to my fellow myeloma warrior's write-up, Gary Petersen, for details. Read up and attend!

Cure vs. Control for Multiple Myeloma - Dr. Vincent Rajkumar, One of Mayo Clinic's Myeloma  "DREAM TEAM", Discusses This Vigorously Debated Subject

02/09/2014

2 Comments

 

Mark your calenders for what I believe will be one of the best Myeloma Cure Panel Broadcasts yet presented.  Dr. Vincent Rajkumar will be discussing the subject of Cure vs. Control for Multiple Myeloma at 5:00 pm EST on February 26th.  For instructions on how to listen or to ask your questions on air CLICK HERE.

The subject of CURE vs. CONTROL  for multiple myeloma has been a vigorously debated subject for a very long time.  Dr. Rajkumar had been a proponent of the Control Treatment Philosophy and ten years ago, when few if any people believed that myeloma was curable, control was overwhelmingly the majority view.  But maybe "The Times They Are A-Changin".  More and more doctors are now saying the big C word, CURE. 

 

Keep reading...

Myeloma Crowd article: I'm Out of Wig Prison!

Here's a photo with me and my girls and my favorite wig.

I love writing for www.myelomacrowd.org! It's such a fantastic resource for myeloma warriors, caregivers, and their supporters. Check it out.

I’m out of (wig) prison!

One of the hardest aspects of chemo is losing all your hair. And I mean, at least for me, all of it.
The first time I did my rounds of chemo pre transplant #1, I went to a salon about a week prior to when my nurses told me my hair would start falling out in clumps, and had it all shaved off. I decided that I would dictate when my hair would come out, not the chemo. It was oddly empowering in a way. My mom sobbed when the stylist shaved it all off. I was numb. I walked out wearing a wig that my friend and fellow cancer survivor, Linda, gave me. It wasn’t too bad looking.

Keep reading...

Interview on ABC 4 News - launch of www.myelomacrowd.org

What a productive day! Jenny and I were interviewed on ABC 4 News Utah this afternoon to talk about the launch of the www.myelomacrowd.org web site. To watch the interview, click here:

http://video-static.clipsyndicate.com/zStorage/syndicaster2/226/2014/02/08/00/34/52f57b72609a.mp4

The site is a fantastic resource all about Multiple Myeloma. It's for patients, caregivers and anyone in the myeloma community. And, what's best is that it's current, accurate and actually understandable for the layperson.

Jenny is my hero-- a true trailblazer and I am so honored that I've been able to pitch in whenever and wherever possible.

Divorced Moms column is out! Help! Where the Heck is My Mojo? (Hint: It Starts at the Salon)

Help! Where The Heck is My Mojo? (Hint: It Starts at the Salon)

By Lizzy Smith, Contributor - February 07, 2014

The other day, I was talking to my friend, Mary. She’s been divorced for a while and is a single mom. She said that she just realized that she’s forgotten how to laugh and have fun. Since her divorce, she’s been so focused on her career and raising her son that she’s gotten lost in it all. “Where the heck is my mojo?” she lamented.

My response was, “It’s there, Mary! You just have to find it.” (Come to think of it, I had to find it, too.)

Keep reading...

Catch us tonight on ABC Channel 4 News at 4PM!

I'm so excited to announce that my fellow Myeloma warrior, Jenny, and I will be interviewed on this evening's news at 4PM on ABC's Utah affiliate. We will be discussing the new www.myelomacrowd.org site and whatever else comes up. I will post a link to the interview when it's ready but if you have access to the newscast, be sure to tune in!

Happy Friday!

Living with an Addict

Philip Seymour Hoffman died of an apparent heroine overdose. He seemed to have it all but fell to weakness. It's so sad. I can't imagine the hell going on inside an addict's head. But I do know all too well the hell going on inside the home of an addict. It is a nightmare beyond belief. And that is my post for today.

Living with an alcoholic or a drug addict is a nightmare of chaos, uncertainty, anger and embarrassment. Rob and I would get in these huge fights. He would scream, wring his hands, jump up and down-- all in attempt to get me to scream back. Whether I walked away and went silent, packed my bags and left for a few days, or screamed back, we would then have a period of a few days where I wouldn't speak to him but we would exchange emails and texts. Many of those emails I've posted here and, no doubt, I will post more.

And then there would be a period of calm. That "calm" would last either a few days or several weeks. And during that time, I would feel such enormous relief and almost, dare I say, happiness. Maybe he really was sorry this time and wouldn't do this again. Maybe this "happiness" was a trend. Maybe this time when he promised to get help for his alcoholism, he would mean it. And during these times I felt something close to love and pity and sorry and commitment. I felt protective of him and my heart would break because I knew he was so very sick-- emotionally, mentally, spiritually and physically. He was broken and I needed to help him get well. And at these times, I felt so useful.

...But on the other hand, I was always waiting for the other shoe to drop. When was the next drunken episode going to happen? Was it in five minutes? Today? Tomorrow? Next week? At any moment, it could and would happen. And of that, I was certain.

Rob used to go to his favorite bar, The San Diego Brewing Company (the BrewCo). One of the managers there committed suicide. He was a very heavy drinker put a bullet through his head. The night before the funeral, Rob screamed at me like only Rob can. It was horrific. I didn't understand this manager enough. I wasn't bereft enough. I didn't even know the guy. I had met him once. And yes, it was very sad. Tragic. But I'm not sure what he was looking for from me. Actually, no reaction I could have had would have stopped that screaming fit. He just had to scream and I was the one there. He then jumped into my car and took off. A few hours later, I drove around looking for him. There he was, at the BrewCo, slamming back drink after drink after drink. Big surprise. What a great way to remember a guy he apparently really loved after the guy, who had a huge drinking problem, commits suicide: drink again!

Rob's daughter, Nic, who had a major alcohol and marijuana problem when she lived with us, had a friend who died of a heroine overdose. Nic was distraught. How could this happen? She could see how awful drugs were now. And the next night, a bunch of this kid's friends gathered together to... guess what? Shoot up, smoke up, and drink.

Makes sense, right?

Of course not.

But addicts can't stop. No amount of clear thinking makes any sense. I can't fathom it because I'm not an addict. But I've seen it. I've lived with it. It is horrific. And it never stops.

Rob used to go on the wagon for a period of time. Once, I believe, he stopped drinking for six months. I say "believe" because who knows? Rob was also a closet drinker. He drank in front of me, he also drank when I wasn't looking. So how much he drank and when is a really big question. But after going to his alcohol therapist, I learned that even if Rob was on the wagon, unless he was in intensive therapy over a long period of time, he was just a "dry drunk." All of the same pathology was still there-- his behavior, personality traits... all of it. And, seriously, it was awful.

I forgive Rob for his alcoholism and his behavior. He is sick. I do not so easily forgive the lies, the broken promises and, most import, the horrific way he treated me when I found out I had cancer. Telling his family I really wasn't that sick-- that I had treatable myeloma and I would be just fine. Calling me names. Making fun of me. That shows a serious monster.

Hearing so much this week about Philip Seymour Hoffman lately has been so painful. Hearing others share their nightmares of addiction or living with addiction has been very raw. It has brought back so many terrible memories. And it makes me sad.

And what do we survivors do? Should we hold an intervention? Should I have held an intervention? Should his family? I don't know. But maybe.