Sunday, April 19, 2015

Next MCRI Radio Show is TOMORROW! Join me in learning more about how we can cure myeloma

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Our Next MCRI Show: Uncovering Clues and Cures for High-Risk Myeloma using Flow Cytometry Testing with Dr. Bruno Paiva, PhD, University of Navarra, Monday, April 20 @ 11 am CST     

Monday, April 20, 9:00 am PST, 10:00 am MST, 11:00 am CST, Noon EST

Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer

Today, the myeloma community waits 2-3 years to determine if new drugs will work for high-risk myeloma patients through a lengthy trial and error process. Dr. Paiva’s goal is to use more sensitive flow cytometry tests to cut that time short and identify working therapies more rapidly. Using the older flow cytometry tests, the percentage of patients who achieve a deep minimal residual disease (MRD) response is the same for standard or high-risk patients. Additionally, the percentage of chemoresistant MRD cells is similar in both groups. With a background in the evolution of myeloma, his research aims to ask the question if using next-generation, more sensitive flow cytometry tests could identify how patients will respond to new drugs and how new treatments would impact patients with high-risk features. The new flow cytometry tests are now looking at the actual biology of the residual cells, providing clues into the discovery of cures, especially for high-risk patients. The new method is relatively fast, highly sensitive and can detect ultra low levels of MRD. 

Dr. Paiva, PhD is Scientific Coordinator of the Flow Cytometry Department and CIMA Lab Diagnostics group at the University of Navarra in Spain. He teaches courses regularly on cellular biology, techniques of quantification and analysis, new treatments in hematological cancers, inflammation as it relates to the blood and minimal residual disease. His work and that of the Spanish group has performed extensive research appreciated by the world of myeloma practitioners on the flow cytometry test as it relates to minimal residual disease. Dr. Paiva specializes in understanding the heterogeneity (or biological complexity) of MGUS, smoldering myeloma, active multiple myeloma and how it evolves. He is involved in both the detection and classification of myeloma and has written numerous papers on the topic, writing or speaking on the subject over 140 times. Dr. Paiva has also been Principal Investigator on clinical trials utilizing immunotherapies including the SAR650984 anti-CD38 monoclonal antibody. He participates as ad-hoc reviewer for Blood Cancer Journal, Blood, Pathobiology, Leukemia and several other publications. He received a premier ASH Abstract award in 2014, 2013, 2012 and Young Investigator Award by the IMF to name just a few.

Friday, April 17, 2015

Book Review: Divorce Demystified. Essential reading for ANYONE considering divorce

Best book EVER for someone thinking about divorcing, or currently going through a divorce. My pleasure to read and review it. Here it is:

Divorce Demystified: Essential Reading For ANYONE Divorcing!
by Lizzy Smith                    
April 17, 2015
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If your gut is telling you that your marriage is on borrowed time, you are right. Don't ignore it! If you are even thinking that divorce might be in your future-- whether it's you who wants to pull the plug or you suspect your husband might be the one -- now is the time to prepare yourself. Knowledge is power and the last thing you want to do is be blindsided by a hasty decision.

If you haven't yet split, you have the luxury of reading, learning and preparing yourself. Don't squander this opportunity. Too many times, a split, though one may be considering it for a long time, is hasty and messy. One may leave with almost nothing, including important financial documents. Then getting that info through discovery can be expensive and difficult. Oftentimes leaving the children behind during a move has had negative impact on custody issues. One spouse may cancel health insurance on another, or prevent the spouse moving from getting anything, including their clothes. In my case, my husband threatened to cancel my health insurance if I didn't get my ass home where I belonged. Thank goodness I didn't take that threat lying down-- I immediately filed a legal separation, which prevented him from carrying through with his threats. If I didn't know my rights, I could have been in dire condition. Don't let your failure to prepare be your downfall!

If you have split and are in the divorce process, as long as you haven't signed that final divorce document, it's not too late! Research and learn before making any final decisions. It is in your best interest, trust me!

But where to begin? I recently stumbled onto a book that should be REQUIRED reading for anyone even thinking about divorce. If you're already in the midst of your divorce, it might even be more essential. The book is Divorce Demystified by Henry S. Gornbein, ESQ (www.divorcedemystifiedbook.com) and also available on Amazon.

Here are a few key learnings:

You must do your homework!
Prepare, study, and research. That means research your home-- like who is on the title (how many women have I talked to that are unaware that their name isn't on the title?). If you want to move out, where will you go? If you want to stay and force your husband to move out, how will you do that? Understand your finances. Get copies of bank statements and retirement accounts. If you own a business together, get copies of everything. If you have time on your side, interview several attorneys before selecting one that you feel can best represent you.

Get psychologically strong
Join a support group. There are terrific groups online. Read self help books. Enlist the support of a great therapist. Talk to your ecclesiastical leader. Tell your friends that you trust about your plans. Get sleep. Eat well. Exercise.

Build your support system, including hiring a great attorney
Hire a great attorney. Before selecting one, read reviews of your attorney, interview several, have a check-list of what's important to you and make sure your attorney fills those requirements. I ended up hiring my husband's ex-wife's attorney. She already had a great background on the kind of man my husband was and it helped. She was terrific and knew my case really well. When I finally fled my home, I already knew who I would hire and that saved me critical time and an absolute disaster of finding myself with cancer and a husband who cancelled my health insurance. Thank goodness I acted quickly and decisively. His threats became irrelevant because I knew beforehand what I needed to do.

In the book, Divorce Demystified, Henry Gornbein covers the following essential topics, each in one simple, easy-to-understand chapter:

Keep reading...

Wednesday, April 15, 2015

Myeloma Crowd Research Initiative radio show: Thurs, Apr 16, 9:30 AM CST - Del 17p and finding a cure

I am so excited to be part of the Myeloma Crowd Research Initiative. The Myeloma Crowd Research Initiative (MCRI) is a new approach to funding cancer research; combining the skill and knowledge of leading myeloma specialists with the patient perspective and supportive patient social communities to select and fund promising research projects in myeloma. The goal of the MCRI is to find and fund a cure for multiple myeloma. And to that end, I am helping to spread the word about this important radio show to learn more about a potential way to treat (cure?) myeloma for those with the 17p deletion. If you're part of my myeloma followers and readers, I hope you tune in, learn more about how we can cure myeloma, and how you can help.

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MCRI High-Risk Myeloma Series: Fighting the Devil Del17p, Dr. Orlowski, MD, PhD, MD Anderson, Thursday, April 16 @ 9:30 am CST

 Thursday, April 16, 7:30 am PST, 8:30 am MST, 9:30 am CST,10:30 am EST

Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer

Deletion 17p is the most aggressive high-risk feature in myeloma. Why? New research shows that it may be because del17p is influenced by the induction of genes that would normally be repressed by p53 (a gene that regulates tumor suppression). And that del17p may also become “addicted” to these genes. Discovering these specific genes and the survivin protein may help uncover a completely new way to help del17p myeloma patients respond to myeloma treatment.

Join us for our third interview on Myeloma Crowd Radio highlighting the new Myeloma Crowd Research Initiative on high-risk myeloma. For the first time, patients and doctors are joining together to find and fund research for a patient group that is desperate for new options. 

Robert Z. Orlowski, MD, PhD, is Director of Myeloma, and Professor of Medicine in the Departments of Lymphoma/Myeloma and Experimental Therapeutics, Division of Cancer Medicine, at The University of Texas M.D. Anderson Cancer Center in Houston, Texas. He is board-certified in internal medicine and medical oncology. Dr. Orlowski earned his doctoral degree in molecular biophysics and biochemistry from Yale University and his medical degree from the Yale University School of Medicine. He completed his internship and residency in Internal Medicine at Barnes Hospital at the Washington University in St. Louis School of Medicine. Dr. Orlowski leads the SWOG committee and has published numerous book chapters, articles, and abstracts on cancer therapy, with a focus on the molecular pathogenesis of oncologic disease processes and the mechanisms of action of chemotherapeutics.

On snowy Spring days and painful breakups. Best way to mend a broken heart? 11 tips!

It is April 15, Tax Day, and it is SNOWING here along Utah's beautiful Wasatch front. I don't mean just a little snow, but A LOT of snow! We have had the mildest winter. It's felt like Spring for months. But today is more winter than we've had since pretty much Christmas day. I love it! A few days we were melting in heat and humidity in Honduras, and today we are back in Uggs and parkas. This will only last a day or two, and then it's back to Springtime weather.


And while it's cold and snowy outside, my heart breaks alongside a good friend of mine who is suffering a broken (shattered?) heart. Breakups SUCK. Last night, I wrote about it in my latest Divorced Moms column. Here it is.

11 Steps For Healing A Broken Heart. It's One Day At A Time!
by Lizzy Smith                    
April 14, 2015
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Fotolia_62674579_XS.jpgI just got home from a coffee meet-up with my good friend "Sherry." She just broke up with her boyfriend last night and she is really struggling. One look at her, and I knew she isn't sleeping. I know all too well that deep pain. When I broke up with "Tom" (the one who got away), I would cry my way to work, manage to hold it together if I was around other people, step back into my office and tear up again. I was a mess, unable to sleep or eat or concentrate on anything. Even spending time with my daughter was a blur- she'd speak to me and I know I had that blank look in my eyes that meant I had no idea what she was talking about.

"My biggest fear," she said, "is that I let him go and I'm just alone."

"But that's not the worse thing ever," I corrected her quickly.

Trust me, I get it. When I fled from my now ex-husband, I was on a MISSION to find a new boyfriend, preferably a husband, before I was too sick and old to find anyone. I felt I was on borrowed time, what with being diagnosed with cancer and all. It took me a good solid year before I realized that I was perfectly ok with being single. I was surrounded by love-- my children, family, friends... This was far preferable than being married to the wrong guy.

"Think about it," I said. "If you never marry again, you have your children, some day you'll have grandchildren and friends and a community of people you love doing things with. That doesn't sound nearly as awful as being married to this guy who isn't accepting your children and has you walking on eggshells. You will be fine. You will not be alone or lonely." As I spoke, I envisioned the cute little old lady group I saw on our recent cruise. They were single, either widowed, divorced or never married, and having a great time dancing, exploring and socializing together. They looked far happier than many of the couples I saw on that ship.

So here was my advice on how to get through the tough days and weeks ahead.

1. "If you're going through hell, keep going" - Winston Churchill
I love this quote. If you are in a bad relationship, don't just sit there. Because if you do, it'll never end. Your hell will remain endless. But if you keep walking, keep going, keep moving, it will eventually end. Memorize this quote. Write it on your bathroom mirror if you must. It will give you strength.

2. Sleep
If the only way you can find peaceful slumber- something your body needs!- is with medicated help, get it. I'm not advocating a drug overdose, but a Tylenol PM or a glass of wine may be in order. It's ok (if you ask me).

3. Eat Right
Now is a fabulous time to renew your commitment to yourself. Eat healthy foods. It'll help keep you emotionally sane and strong. Limit sugar and processed foods. Loads of nuts, beans, fruits and veggies-- you know the drill.

4. Exercise
Power walks. Join a gym. Discover a new hiking trail. Join a swim team or softball team. Take up yoga. Your body needs exercise to be healthy and strong. So does your spirit. Plus, since you'll be re-entering the dating scene at some point in the future, it's time to start feeling more confident. Exercise is a fabulous way to do that.

5. Read
My favorite book ever when I suffered a painful breakup was "He's Just Not That Into You." It was true, funny, and kept me strong from going back to my ex boyfriend when there really was no point.

6. Make A List Of The Relationship's Bad Points
It's hard to remember why the two of you broke up sometimes. We tend to remember only the good, with the bad a fading memory. This is not good! Make a list of all the bad things about him and your relationship. Be brutally honest! When you feel tempted to try and reconcile, re-read that list a million times if that's what it takes. You deserve better and sticking in a bad relationship will never give you the freedom to find that "better," even if that means being a happy single person.

Keep reading...

Tuesday, April 14, 2015

Cruising: A great option for families, single moms, or pretty much anyone. But there are "catches." The pros and cons

Looking for a great trip option if you have children? Cruising is not a bad choice. My latest via Divorced Moms...

Got kids? Cruising Is A Fab Vacation Option: The Pros & Cons
by Lizzy Smith                    
April 11, 2015
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As I write this article, I am sitting on a cruise ship spending a ridiculous amount of money to use the Internet. It's my daughters' spring break and it was time to head for warmer temps and fewer responsibilities. We boarded the Princess Emerald after flying to Houston the day prior. Our first three days were at sea, followed by a day each in Roatan (Honduras), Belize City, and Cozumel (Mexico) respectively, followed by our last day at sea. We disembark tomorrow.

Going on a cruise is a great travel option, especially if you have children. But it's not for everyone. Here's the low-down:

PRO: It's affordable
Generally, you can find some incredible deals for cruising. The most expensive part is often flying to the departure port. I've seen prices go lower than $500 per person for a seven-day cruise, which, once you're on board, includes all your meals and most activities. Granted, those are usually for interior cabins (you have no windows), and that means you generally have no idea what time of day or night it is if you don't have a watch on. Once you're on the ship, you can keep it as cheap or pricey as you want, it all depends on you.

CON: It can be really expensive
Once you're on the ship, be very careful. Your costs can add up fast. Food and basic beverages are included, which means coffee, iced tea, water, and sometimes lemonade. If you want soda, beer, wine, spirits or coffee upgrades, it all costs more. On this trip, I purchased one soda card at $5 per day and one day, it's my older daughter's to use, and the next day, it's my younger daughter's. I also purchased a coffee card, which means that for an additional $35 I get 10 coffee beverages. You can also purchase alcohol cards, upgrade restaurants for better cuisine, go on tours, hit up the spa, take in shows or listen to live music, go dancing, and shop. Be extremely careful to turn off your phone while on the ship, or at least put it on airplane mode. Because if you don't, you're paying outrageous shipboard prices. Last year, we spent a week on a ship in the Mediterranean and I used my phone liberally to Facebook, text, make phone calls, and even blog. When I got home, my phone bill exceeded $1,200 for that week! I complained but all my phone company did was give me a $50 credit towards my next bill for my troubles. Never again!

PRO: Visiting lots of cool new places is easy
Ready for a sample of ports? Cruising is definitely for you! But if you love a port and want to spend a bit more time there, too bad, when it's time to get back on the ship, YOU ARE DONE. It makes it a bit of a cattle call. Everyone rapidly descends off the ship and then everyone gets back on. On this trip, we were absolutely not ready to leave Cozumel but too bad/so sad. Nonetheless, it gives you a great opportunity to quickly see places and you may just want to return to one of your favorites. It's how I discovered Split, Croatia. I never heard of Split before and now it's one of my favorite places on the planet. Thanks Norwegian Cruise Lines!

CON: If you love a destination, don't visit it on a cruise
If there's a port you really love, you will not enjoy the cruising visit very much. Generally, you never have enough time in any port. To see the best stuff, you often must buy a tour. And on tours, you can't veer (much) from what, when and how they are showing it to you. Cruise visits are highly structured so if you like exploring some place and doing it at your own pace, avoid cruising. When we visited Peter the Great's summer palace outside of St Petersburg, Russia and it was time to go, I wanted to cry. Oh well, get back on that bus!

PRO: There is a ton of stuff to keep kids busy
Every cruise I've ever been on has a Kids Club and Teen Club. That means you can drop your kids off for supervised activities mostly all day long and well into the evening. None of that costs extra (though expect to tip generously). That means you have plenty of adult time to nap, hit the casino or spa, or simply do anything you want.

Keep reading...

2015 Spring Break In The Tropics!

We are back from Spring Break and we had an awesome, amazing time. It was the first time we took all four children on a trip together. To be honest, I was really apprehensive. It's not easy integrating a 17, 16, and 15 year old. My 9-year old, I wasn't worried about. But three teens (two of who are very close sisters) is a really tough number, regardless of the circumstances. Well it turned out fantastic. The three teens got along really well and I came home truly loving these girls-- all three of them. We flew from Salt Lake City to Houston, spent the night in a hotel, then went to Galveston and got on the Princess Emerald. We had two cabins for the six of us. We had three days at sea, which we spend mostly poolside, resting and relaxing. It's been a very long time since I had a trip like that-- most of mine are go, Go, GO!!! Our first stop was Roatan (Honduras). It was hot and humid and stunningly GORGEOUS. Oh my gosh I forgot what it was like to be on a tropical island. As I thought about it, it was four years ago when my ex-husband and I were in Costa Rica and a year prior for the girls when we went to Maui. It was exhilarating diving into the water and snorkeling. I swear to you, I want to go back for a week to this piece of heaven. Cruising isn't for everyone and there is never enough time in ports but it does provide a snapshot, a sample, of places worth going back to.





Our next stop was Belize City. I had been to this country some 15 years prior, for a week, on Ambergrise Caye and it remains one of my favorite trips and places ever. I was ecstatic to come back. This trip was on the mainland and we went cave tubing and zip lining. Oh my gosh-- the countryside was fascinating, beautiful, and peaceful. Nirvana. I have never cave tubed before and it was a very unique experience floating among stalagmites and stalag-tites (no double misspelled- forgive me, I'm in a rush). And this was a real zip-lining, extreme experience. My second zip, my daughters' first (though they did a lame zip-lining thing a few years ago here in Utah). Afterwards, we indulged in organic, locally grown chicken, fresh nachos, and tomatoes, onions and mangos. I love yummy high quality local food!



Our final stop was Cozumel, Mexico, which we saw zero of. We got on a ferry, then a bus, and went to Chichen Itza. I had been here before. It was my college graduation present to myself. I talked my roomie, Becky, into going with me, then met up with my parents and brothers, and spent a week in Cancun, with this being a one-day tour. I loved it and William and I decided that our children had to see something educational on this trip. This is one of the Seven Wonders of The World. It turned out to be a really long trip-- 9.5 hours with just 35 minutes at the site. Not happy about that, but we did get some fabulous photos and it will be something that none of the girls will forget. Worth it? I suppose...





And now we are home, kids back in school, and it's a race to the finish line for summer-- just six more weeks. And with our BIG TRIPS behind us (ok, one more mini trip to Palm Springs for a couple days but that almost doesn't count!), it's time to start planning our October wedding and shopping for a wedding dress. For sure we are getting married outdoors among spectacular fall foliage. And the wedding must be fun. What that all means, we shall see.

Saturday, April 4, 2015

10 Things We Cancer Survivors Want You To Know (from The Myeloma Crowd)

My latest on www.myelomacrowd.org

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10 Things We Cancer Survivors Want Everyone To Know       

Life after a cancer diagnosis is never the same. However, it can be better, harder, more meaningful, stressful and, well, different. But if you’re sitting on the other side of the fence, meaning that you are a caregiver, husband, wife, child or friend, there are some things that you need to know.

1. We are not our former selves
Each cancer survivor will find their “new normal” at some point. That means that once we’ve grappled with our diagnosis, have a better understanding of our treatment, and have settled into the drugs and therapies that we must, we then begin crafting our new lives. Emotionally, we are different. We are more fragile. Life takes on a different meaning. We have new priorities, loads of medical appointments, and medications that come with side effects. Many of us go back to our former jobs; others stay out on permanent disability. Our food tastes may differ, we often require more sleep, and our energy level is rarely ever the same again. If you feel like a different person has emerged after cancer, you’re right. Most of the time, we are better for it, oftentimes, however, we go through stages of fear, depression, relief, gratefulness and anger.

2. Sometimes we feel sick, cranky, tired, afraid, or fatigued
We may have once had loads of energy and now we don’t. Oftentimes we catch every bug out there. And sometimes, our medications leave us with amped up and easy to annoy. Some of us may experience crying fits and depression. Fear is common. And almost universally, we simply get tired more often. If we don’t feel like going to the amusement park or the zoo, unpacking boxes from a move, and laundry stays in the dryer too long, it’s because we are not functioning at our former capacity.

3. We have real side effects
Many cancer survivors hate telling others all our woes. We get tired of complaining, too, but we probably should indulge in pity parties more often. All those medications we take have real side effects– fatigue, neuropathy, pain, breathlessness– and that’s just for starters. We power forward, typically, so sometimes others might forget we’re sick. Often we look really healthy. But few of us really feel like a normal healthy person.

4. We need others to cut us some slack
If we seem tired, cranky, lazy or forgetful, be kind and patient. We need help more than we need criticism. That said, if we seem to be wallowing in grief or depression, maybe you should ask us to get professional help. If we refuse, try even harder. Talk to us. If we need to sleep, let us. If we are too sedentary, encourage us to get up and move, and to get out of the house. Reminders are good. You see things from a different perspective than we do.

5. We need understanding
If we sometimes don’t apologize for our behavior or live up to your expectations, be understanding. We know being the loved one of someone who is ill isn’t easy. We try to be understanding of those around us. We often fail.

6. We need (or ought to) eat differently
Cancer survivors need to eat healthy foods that will give us the best ability possible to fight our disease. Depending on where we are with treatment, we may have severe dietary restrictions. Support us in our quest to make the best food choices possible. Eat healthy with us. Pick good restaurants. Cook healthy foods.

7. We can sometimes be really forgetful
Chemo brain is real. If we forget what we said the day prior, and we can’t remember anyone’s names, or even show up for appointments on the wrong day, be understanding. Help us laugh it off. There’s not a whole lot we can do about it anyway.

8. We love help , event if we don’t like asking for it
If you want to help, consider taking our children for the day, or bring a healthy dinner, or helping to clean our house or mow the lawn. Many cancer survivors have a hard time asking for help but we need it.

9. When we are spending too many days indoors, get us out. Help us live
Sometimes it’s easy to become isolated and sedentary, finding refuge in our homes. If this sounds like someone you know, do your best to get them out, do something fun, and find joy and meaning.

10. If you think we need professional help, call us out on it. Get us help
If you find anything alarming, please talk to us about it. It’s ok to call our doctors, too.

For the original article, click here.