Monday, May 25, 2015

MCRI Radio Show: Let's CURE myeloma! CAR T cells may just be the way to do it. Tune in Weds, May 27 11A CST

Tune in to Wednesday's Myeloma Crowd Research Initiative's show! This project could be a CURE for multiple myeloma! Let's WIN this battle. I think we are SO close. From www.myelomacrowd.org.
   

Our Next Show: The power of CAR T cells in Multiple Myeloma with Dr. Einsele and Hudecek, University of Würzburg, Wednesday, May 27 @ 11 CST


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

CAR T cells are a hot topic in multiple myeloma as an extremely powerful and potentially curative therapy. It is a highly personalized treatment because the patient’s own T-cells are redirected to eliminate cancerous cells using a targeted protein found on the myeloma cells. Learn what Dr. Hermann Einsele, MD and Dr. Michael Hudecek, MD are doing with CAR T cells to target the CS1 protein, commonly found on myeloma cells. 

Hermann Einsele, MD, is Professor of Internal Medicine and Director of the Department of Internal Medicine at the University of  Würzburg in Germany. Following his medical training at the Universities of Tubingen, Manchester, London and Seattle, he became a research fellow in the Department of Hematology/Oncology/Rheumatology/Immunology at the University of Tubingen, Germany. He was board certified in internal medicine in 1991 and became Assistant Professor in 1992. In 1996, he was board certified in hematology/oncology. He is a Visiting Professor at the Fred-Hutchinson-Cancer-Research-Center in Seattle, USA and the City of Hope Hospital, Duarte, USA.

Professor Einsele is a member of the American Society of Hematology, the European Group for Blood and Marrow Transplantation (EBMT), and the EBMT working parties for Infectious Disease and Immunobiology. He is currently a member of the board of the German Society of Blood and Marrow Stem Cell Transplantation. In 1999, he became Chairman of the German Study Group Multiple Myeloma. In 2003, he received the van Bekkum-Award of the European Society of Blood and Marrow Transplantation. He has published > 350 articles in peer-reviewed journals. His research interests include multiple myeloma, stem cell transplantation and adoptive immunotherapy. He is a member of the board of the German Lymphoma Group. In April 2011 he was elected Honorary Fellowship of the Royal College of Pathologists (London).

Dr. Michael Hudecek, MD,  leads the CAR T cell lab work at the University ofWürzburg. Dr. Hudecek obtained his MD with summa cum laude from the University of Leipzig, Germany, and performed his post-doctoral research fellowship at the Fred Hutchinson Cancer Research Center in Seattle, WA, USA. Dr. Hudecek joined the University of Würzburg in 2012 as a clinical fellow and research group leader.

Friday, May 22, 2015

Divorced Moms: Tips for co-parenting during the summer months (by guest author Missy Boyd of High Swartz LLP)


My latest via Divorced Moms. Happy Memorial Weekend! Be safe, my fearless readers, and do something this weekend that's different and brings you joy. A tall order? Not really. Do something to really write home about. I will and I'll share next week.

Lizzy

Got Kids? Co-parenting Tips For The Summer Months
by Lizzy Smith, with Guest Writer Missy Boyd of High Swartz LLP (www.highswartz.com                     
May 22, 2015
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Fotolia_41023901_XS.jpgI don't know about you but I am excited that school is almost over. For us, next week is it! I've already scheduled out some camps and summer vacation plans. By now, I am so tired of the structure, homework packets, lunches, and practice spelling tests that I could scream. I've long stopped looking in my children's backpacks for anything and I've found myself skipping some of those "mandatory" end-of-school parent activities because I am just burned out.

But how to manage summer is another topic entirely. These days, I work from home and enjoy huge flexibility. But I remember all too well scrambling to find summer camps for my children, managing visitation schedules, and backup plans if my children were sick or another activity came up.
And how many parents do I know that end up in a warzone over the summer plans of the children. One parent thinks it important that a child go on an expensive school-sponsored trip to Italy while the other parent refuses to pay half the bill. Or another parent thinks it perfectly ok that children are left home unsupervised to save money, while another parent wants them in structured camp, like swim or art. One parent may want to take the children on vacation during a week not typically hers. Or both parents have conflicting summer plans. I know parents who literally duke it out in court, spending untold money to work it out. When this happens, attorneys must get involved for the sanity (and sometimes safety) of everyone, including the children.

I am excited to offer excellent advice written by family law attorney Missy Boyd of High Swartz LLP (www.highswartz.com). Enjoy!
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As each school year winds down, parents’ schedules grow more hectic.  A parent’s calendar is filled with final parent-teacher conferences and end of the year class events. Meanwhile, determining summer childcare is at the top of their long to-do list.

Whether an attorney is working through an agreement for an open divorce case, or has been called upon to solve a dispute, it is important we craft a solution that is in the best interest of the entire family, and prevents future conflict.

When considering shared responsibility of school activities, parents who kept the divorce amicable may be able to attend events together, or can cooperate by taking turns. For the not so friendly exes, consider what is most important to each spouse, and what their personal schedules allow.

Also, contact the school. Nowadays most schools allow separated parents to meet with teachers individually and post report cards online for shared access.

This issue demonstrates why it is important to share the custody agreement with faculty once complete.  It helps the teachers keep things as convenient as possible for the family, and the child.
Selecting summer childcare is an interesting issue because it can be considered an amenity and not a need.  Also, there is virtually no legal precedent which delineates at what age a child can be left home alone, which can lead to some strong disagreements between parents.

Keep reading...

Tuesday, May 19, 2015

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

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



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

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

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

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

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

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

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

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

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

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

Keep reading...

This life post cancer isn't so bad. In fact, sometimes it ROCKS



A few weeks ago, William and I were went on a fabulous walk. The kids were in school and the day was perfect. Not a cloud in the sky, mid 70's, and sunny. We walked from the house to Thanksgiving Point Gardens during the tulip festival. The waterfalls were raging and it was a flower explosion of spectacular colors. We started talking about fear and our ability to find happiness.

I stopped mid sentence, mid- stride. I had an epiphany.

"I stared my biggest fear in the face. I got a cancer diagnosis, I lost my health, my hair, my husband (that was a great thing!), my career, home, and vacation house. But look where I am now. I am NOT sitting in a windowless office getting ready to head into another mindless meeting to deal with artificial deadlines. I am outside among the tulips! And guess what? This is spectacular!"

I wouldn't wish cancer on anyone. But what if-- just what if -- the worst thing we can imagine happens. Then what? If you had told me a few years ago that I would simply walk away from a high paying job, leave my house and vacation house, and throw it all up in the air, I would have thought you nuts. I would NEVER have even contemplated letting go of all my responsibilities. But life presented me with no choice. And I survived it. I healed. I thrived. It's ok. And honestly, I can't imagine going back to my prior life. It was horrid and awful and... awful. All of it.

I recently read an article about a woman who was working stupid hours in New York City and she simply walked away. She sold everything, moved to St John and started selling ice cream on the beach. She found a better life than the grind she lived before.

What happened when I just walked away from my horrible former life? I found tulips, sunshine, and a purposeful life. Letting go.

Monday, May 18, 2015

Cancer Stories: Making up cancer to snag a guy. Accusing someone of making up cancer because you're evil. Oh my!

My latest on Divorced Moms. During my infusion appointment this afternoon, I caught a Dr. Phil episode in which a horrible woman in San Diego faked multiple myeloma, convinced her friends and family she was really sick, and accepted loads of cash in donations, watched her friends shave their head in support, and get tattoos. Seriously, no one deserves cancer, except her. Why can't she have multiple myeloma? I can only say, faking cancer is really bad karma. Which then lead me to write my post today about a woman who faked leukemia. And also my ex husband, Rob the Great (Alcoholic) who accused me of faking cancer. Seriously, if you accuse someone who is in the midst of a cancer diagnosis and treatment of faking it, there is a very special place in Hell reserved just for you. And so today's post is seeping with anger and indignation. Because that's how I'm feeling at the moment. Of course, it doesn't help that I'm high on Dexamethasone today (50 mg oh my gosh), I will get no sleep at all tonight, and my heart is pounding. I am picking William up from the airport in a few minutes. I hope to calm enough to feel joy and excitement by then!

Come to I think of it, I'll watch the final Mad Men episode one more time to calm down. It was so beautiful. An amazing, spectacular, end without being sappy. They wrapped it up perfectly. Ok, that's all for now.

Peace and joy, my readers,

Lizzy

When You're Willing To Fake Cancer To Snag A Guy
by Lizzy Smith                     
May 19, 2015
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When I was diagnosed with multiple myeloma (a blood cancer) and immediately left my husband, he accused me of faking the whole thing. He also went about telling his family and friends that I was making it all up. Which was quite shocking considering I gave him a copy of my diagnostic report and he saw me with a port stuck in my chest. One evening he sent me a text with wild accusations that included: "You're a thief, a liar and a drama queen. You're making up cancer!" I had heard this stuff before when I was being diagnosed, but this one was really ill-timed: I happened to be on Day 1 of a 4 day hospital stay because I was spiking a really high fever. With no immune system, if we didn't find the infection (if there was one) and treat it immediately, I would quickly die. I immediately texted him a photo of me wearing a pink beanie cap to protect my bald head, and my arm attached to an IV. It didn't matter to Rob the Great (alcoholic). I was still a liar. Clearly, he was raging drunk (again).

When he told his mother that I was lying about cancer, her response was: "I never believed she had cancer anyway. She's just made her pretty little bed and now she needs to lie in it." Rob forwarded the email to me. It was horrifying. Whatever the fuck that meant. My response to that (which I never wrote out or sent) was:

1. I'm not a liar. If you need to find one, though, look to your son who lied to me about his alcoholism and went to great lengths to hide it from me when we were dating. He frauded me into marrying him because had I known about his wild drinking binges, he wouldn't have made it past the first date and look how much better off we'd be. Honesty goes a long way and if you had encouraged your son to lead an honest life, maybe he wouldn't be the disaster he is today. And you knew about his alcoholism and watched silently as I married him. And then proceeded to have conversation after conversation with me about his problem.

2. Maybe, just maybe, if you had taken a bigger interest in your son and conducted an intervention, he would not be going around terrorizing the people around him. Maybe he'd be a better man. Granted, as an adult, he is clearly responsible for his own abusive behavior.

3. How I made my bed by getting cancer and suffering through treatments is nuts. I worked myself to the bone trying to manage a household almost with zero help from your alcoholic son, to my own detriment. I carried his enormous weight around my neck, drowning every single day while he sat his fat ass on the couch watching TV and too-high volumes or going to bed in a drunken stupor at 7PM. All while I tried to avoid his horrific, explosive tempter tantrums.

4. Who the fuck makes up a cancer diagnosis anyway?

Well, to the last point, I have found a few. No one deserves to get cancer. No one. Except maybe someone who makes it up.

Such is the story of "Betty," a single mom to a young son, who met a guy "Ben." She fell crazy in love with Ben. Ben adored the son, Betty not so much. But he continued dating her for several months until he was ready to call the whole thing off. He tried to break it to her gently. A day later, Betty called Ben in hysterics. She had just been to the doctor for a follow-up appointment and she had advanced leukemia. She had maybe ten months to live. Ben felt horrible, what would become of this fatherless boy? Betty had no contact with her son's father. Ben did what he thought was the right thing: He offered to marry Betty, become her son's legal guardian, and raise him after her death. She readily agreed.

Keep reading...

Friday, May 15, 2015

Lizzy Smith via The Myeloma Crowd: The case for living LIFE today. Because it can all change in an instant

A wrote about this topic here on my blog several weeks ago. I added details, plus some advice and published this on Myeloma Crowd. This is an important article for anyone because tragedy, illness, and unexpected events happen to everyone, whether it be an accident, cancer, divorce... I could go on and on. That's why I've decided to live BIG and GRAND because life is right now, this very moment. It's about creating memories and relationships. May Zoe's story be one more powerful reminder. Laugh and have joy as much as possible. Because life can be beautiful and amazing.
    

The Case For Living LIFE Today. Because It Can All Change In An Instant

BY LIZZY SMITH

Who can ever forget their path to cancer diagnosis? No one. It is a life changing event of epic proportions. Some of us had health problems for a long time that were left too long either ignored or undiagnosed. Others, like me, felt just fine until hearing “you have multiple myeloma” unexpectedly. Either way, life changes forever in that one instant.

Such is the case of my friend “Zoe.” Just two months ago, she 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.

This was all quite a shock. She really had no symptoms prior. Or did she? Looking back, she had lost quite a bit of weight, but she was trying to eat healthy. She was a little tired, but she worked crazy hours as a nurse in a hospital and had children. Nothing else seemed amiss.

Just the next day, Zoe 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 quickly, she needed treatment immediately.

About a week later, I got a text from our mutual friend. Zoe was not doing well and 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 the procedure 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. 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. After reading the text and a quick phone call, 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.

Today, Zoe is still not doing well. There are complications, newly discovered masses, breaks in chemo because she’s too sick, and endless hospital visits. I have to believe she will beat this. I’ve met countless people in my work with cancer people who have been on the brink of death, have been told to get their affairs in order, and have turned it around, beaten the cancer and healed. She must be one of them. I asked our mutual friend to give her some advice from another fellow warrior who’s been there. This advice is true for everyone in any situation:
  • Her odds of getting better increase exponentially by taking care of her physical body. To the best of her ability, she must eat power foods and eliminate anything processed. Her body needs help. Load up on organic produce, beans, nuts and seeds.
  • Even ill and in a highly precarious state, get up and move as much as possible. I met a woman going through a transplant who managed to do modified yoga from her hospital room. I met another guy who walked the halls nearly every day throughout his transplant for over a month. By the time he was done, he had walked a marathon. Not everyone can do this, but push it as much as possible.
  • Stay emotionally healthy. Even in a hospital join a support group either in person or online. Read self help books. Meditate. Pray. Laugh with friends even if it’s really hard. Ask for visitors if that’s allowed. Be surrounded by only great people who are there to support you.
  • If possible, get acupuncture, massage and try hypnotism.
  • Take daily showers and feel clean. If possible, get dressed so when you look in the mirror, you can feel strong and resilient even if you’re not feeling it (yet, anyway).
  • Watch fun movies and read uplifting books. This is a time for comedies.
  • Continue reading those magazine and books that show life can be normal. It can be inspiring to an extent.
And the overall theme of this experience (and article)? 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. I travel like crazy and have discovered locales that bring me great joy. I go hang gliding. I ski. I do things that are outside of my comfort zone. When I feel angry, sad and depressed, I hit up the salon, go for a walk, or play with my friend Katherine’s dog. Anything to get out of that zone and into a different one. I plan to go skydiving soon. Wear your favorite shoes, use your pricey perfume and favorite dishes daily, and break out the handbag you paid way too much for and have been hesitant to use in case you ruin it. Who cares? It’s doing no good in the closet. Go hang out with your friends and laugh. Pity parties are allowed, but letting them go for too long does accomplishes absolutely nothing and can be extremely dangerous to our fight to get well, recover, and our emotional, spiritual and physical health.

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

Divorced Moms column: Marriage Hell - I Wish You Had A Bigger Heart

One of my more brutally honest blog posts, edited, scrubbed up and published on Divorced Moms. Life with an alcoholic is universally a sad, volatile experience. Enjoy!

Marriage Hell: I Wish You Had A Bigger Heart
by Lizzy Smith                    
May 14, 2015
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Back when Bob the Great (Alcoholic) and I were married, we went on a cruise with his whole family. His parents paid for everyone to go, which was incredibly generous, thoughtful and kind. One day on the ship, there was a newlywed game. Bob and I were going to enter the contest since we had been married for just over a year at the time but we didn't. I didn't even go to the game but Bob did. He gave me the summary when we met back up. One question that they asked was "I wish my wife had a bigger ....." Bob said that if we were playing the game, he would've answered "I wish my wife had a bigger heart."

"What does that mean?" I asked.

"You can be cold," he answered. "I wish you looked at me more lovingly."

Nice, I thought. And I wish you had a bigger commitment to not drinking. I wish you wouldn't scream. I wish you could handle stress. I wish you would finally start paying the bills. I wish you would help around the house. I wish you would stop getting in my face. I wish you wouldn't make promises and break them all. I wish you would stop acting as if you're the most important person in the whole utility company where you work and blame your job for why you have to hit the bars every night before you come home. I wish I wish I wish I wish. Well, maybe if you were a better man, I wouldn't be so cold. I wish I loved you. I wish I liked you. I wish I respected you. I wish you weren't an alcoholic. I wish you'd stop blaming me for why you drink. I wish you'd start taking responsibility. I wish you'd stop sitting your fat ass on the couch and watching TV while you watch me work like a dog. I wish you'd stop going to bed at eight o'clock at night. I wish you weren't so lazy. I wish you were better in bed. I wish you had morals.

When we got off the ship, Bob made a commitment not to drink anymore. "Please go with me to AA," he said. Absolutely! We went to two meetings together. Apparently, Rob kept going for a few more weeks until his daughter called me one day to say her dad wasn't at AA, he was at his favorite bar. I drove there looking for him. No car in the front. I was in the parking lot when his friend, Kevin, came out. "Is Bob in there?" I asked. He nodded. I drove around the back of the bar and there was Bob's car- hidden from view just in case I drove past.

I walked into the bar. "Hi!" I said in an overly cheerful voice.

"This is non alcoholic beer," he said. Sure it was (wink-wink)!

A few days later, I gave Bob a big huge pass. His dad went into the hospital and it was awful. He wasn't doing well. One day, we were at his bedside and he had a moment of clarity. "Don't forget to let me tell you what happened," he said. He had just come out of a few days of near unconsciousness. I kept reminding Bob to ask his dad what he meant. He probably had seen angels or family or whoever. I wanted to know. He never got the chance to ask him because he passed away shortly thereafter. It was on a Sunday.

 Bob's dad was a great man. Kind and generous. I never heard that man speak ill of anyone. He was wonderful with the children. They would sit on his lap and he would talk to them endlessly. I never saw him light up more than when the kids were around. Siena still talks about him often.
Bob, no surprise, started drinking again with a vengeance after his dad passed away but before the funeral. And boy oh boy did I get an earful about how he felt about his dad. Much of it positive, a whole lot that wasn't. I was writing and delivering the eulogy and I wanted to smack him. Get off the fucking booze, sober up, and shut the fuck up, I wanted to scream. I loved his dad. I was working hard to help out his mother by doing the eulogy, planning the logistics of food and beverage for the wake, writing the obit, and working with my meeting planner to organize the funeral luncheon. Bob was at the bars. Still, I said nothing. He was in mourning and grief and I tried to give him as many hugs and as much comfort as I could. It was a tough one-- feeling empathy and utter disgust at the same time.

Keep reading...