Finding a cure. Yes, it is possible (Cure Panel Talk Show)

Cure Talk

I originally went on Twitter simply to promote my blog. I feel like I have an important story to tell and I heard from many who stumbled on my blog that my story gave them hope and encouragement (and some were even entertained by it). Twitter, I thought, would be a good way to find other readers.

But then something bigger and more important happened: I found incredible Multiple Myeloma heroes-- fellow warriors and those working to find treatments and cures. Getting involved in my small way has given me a very powerful reason to press on and to help find of a cure for my illness.

The Cure Panel Talk Show
Which leads me to The Cure Panel Talk Show (http://trialx.com/curetalk/), of which I was a panelist this past Friday. Priya Menon, Scientific Media Editor at Curetalk, was moderator and she interviewed Dr Ajai Chari of Mt Sinai Hospital. Those of us on the panel were able to ask many questions about clinical trials, upcoming treatments, barriers to participating in trials, and how to overcome them. You can listen to the show by clicking here: http://trialx.com/curetalk/2013/09/clinical-trials-cost-a-minimum-of-10k-15k-per-patient-dr-ajai-chari-of-mount-sinai-hospital-in-conversation-with-panelists-on-the-cure-panel-talk-show/

Some of the things that I learned on the show were:

• Something like 3 percent of Multiple Myeloma patients participate in clinical trials
• We must increase those numbers and increase awareness of the importance and advantages of participating in clinical trials
• Myeloma patients are living longer and longer (yeah!!!), though there is no cure yet (but there is hope!)
• One example: an 18 year survivor has received many drugs thanks to trial participation and this probably has a lot to do with surviving this long, especially since so much has happened in the field of this disease since he was diagnosed

I learned so much more, too, like the future of medicine and where treatments for this disease is heading. Fascinating.

The site has an amazing array of information for those in the Myeloma world. One of my fellow panelists and Myeloma survivors, Pat Killingsworth, wrote about the importance of getting at least 30 minutes of exercise per day, even when one is in the midst of transplant. Wow- that is tough but I think most days I've done that. I hope it helps!

I am on a quest. I don't want to just be in and out of treatment for the rest of my life. I want a cure to be found. And to the extent I can push that forward in my small way, I'm going to do it.

Health Insurance Marektplace opens Oct 1. Get covered!

www.getcovered.org

Did you know that one out of every five Americans aged 18-64 is living without health insurance? Chances are, it's someone you know -- it may even be you. But the health care system is about to change for the better.

That's why I just signed up to support Get Covered America, a grassroots campaign focused on helping uninsured Americans understand their new health coverage options under the Affordable Care Act.

Sign up to learn how the health care law will affect millions of everyday Americans like you.

Additionally, this is from www.lls.org (Leukemia & Lymphoma Society):

On October 1, 2013, millions of Americans who were previously uninsured will have the opportunity to purchase health insurance coverage effective in 2014 under the new insurance marketplaces established by the Affordable Care Act (ACA). This is great news for individuals with pre-existing conditions, such as blood cancer, who could currently be denied coverage based on their health status. These consumers can no longer be denied coverage beginning January 1, 2014. Some changes already implemented under the ACA have benefited patients tremendously, including the ban on lifetime limits on care, the ability of dependents to stay on their parent's insurance up to age 26, and coverage of preventative benefits. - See more at: http://www.lls.org/#/diseaseinformation/getinformationsupport/aca/
 

Cure Panel Talk Show is today!

I'm so excited to participate in today's Cure Panel Talk Show at 6:00PM Eastern. For details, click here: http://www.blogtalkradio.com/curepanel/2013/09/26/mtsinai-and-myeloma-on-cure-panel

Dr. Ajai-Chari from Mout Sinai Hospital, New York, is the featured guest on our Myeloma talk series in September scheduled for 26 September @ 6pm ET.

Dr. Chari is a renowned myeloma expert. Dr. Chari would be discussing Clinical Trials on Myeloma on the show with patient experts, Gary Petersen, Jack Aiello, Pat Killingsworth, Cynthia Chmielewski and Lizzy Smith.

News from a fellow cancer warrior

"Tim" is a family friend from years ago. He is a fellow cancer warrior and I wanted to share with you an announcement he sent to his friends. Tim is a great man and I look up to him. He inspires me and I hope his words inspire you, too. Every time I am reminded of the great people out there, it continues to restore my faith in humanity.

How is it that I didn't marry a man of great character to begin with? I'm going to think about this one and write a future blog post on this very topic. I need to ensure that my next choice is a good one and I never end up repeating past mistakes. I'll leave you with this as I think about how I'll ensure I do things differently the next time. Stay tuned!

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Dear Friends,

 

I have been a bit remiss in giving health updates, primarily because much has been up in the air. It is settling down now, however. I go in for a major operation on Thursday, September 26. The current plan is to remove a cancer from my ureter and to possibly remove my bladder (it is clear of cancer at present, but it may be best to remove it, since my cancer did recur on one occasion). If this happens, I will be in the hospital for 8-10 days and will recuperate for a couple of months. This may sound ominous to some, but I am completely at peace. As I have prayed about this, I have felt great peace. Let me share the note that I wrote to my doctor:

 "I have spent much time reflecting and praying, even fasting, regarding what I should do. Earlier this week, I awakened early and had the strongest sense that all will be well and that I should simply ask you to do what you would recommend or do for your own father or brother if they were on the operating table and asking for your counsel. Throughout this entire process, I have been told and have felt that the best thing I can do is what you would have me do. During the operation on Thursday morning, I know that you, and those working with you, will be blessed and inspired to use your talents well and wisely. I am at perfect peace about that. You will surely address the left distal ureteral carcinoma. The present plan is to proceed with the removal of the bladder and the dissection of the lymph nodes. I am certainly fine with that and would only add that when you go in, do what is best and what you feel to do. I am prepared for whatever that might be. There are so many wonderful blessings that have been associated with this learning experience. I am a better person (husband, father, grandfather, and even teacher and scholar) for what I have learned as I have dealt with this cancer. One of the best of those blessings has been to know that I am in such able and caring hands."

 

I am currently teaching contracts and I told my students that if I were offered the opportunity of becoming a more loving and kind human being, husband, father and grandfather in exchange for this cancer treatment, I would agree in a minute, and I suspect I did just that in the world before this world. I am so deeply grateful -- awe would fit well here -- for the blessing that this has been.

I know that the coming weeks will bring their challenging moments, but moments they are. I also know that I will be blessed by the Master-Teacher as I face this great learning experience. Having said that, I will ask for one favor: I know that prayers are effectual, and I ask for yours, if you feel so inclined.

As I am wheeled in to the operating room on Thursday morning, my heart will be full of love for all who have been so good to me over the course of my lifetime, many of whom are friends on this page.

With love and gratitude,

Tim

How to leave abuse behind

This is me yesterday on the hike William and I went on in the canyons above Logan, Utah (details below). I'm living proof that, cancer aside, life after abuse can be beautiful. (PS: And how did I get this much hair, one might ask. I got hair extensions! In church, a lady asked me what vitamins I'm taking. No vitamins, just some cold hard cash. Worth every penny. So I'm veering off topic here but funny story: Back when I wore a wig, William and I were cuddling up and my wig slid off my head. He knew I wore a wig but no way was he allowed to see my bald head. When I went to sleep, I put on a pink beanie cap. I've learned to laugh at myself so instead of feeling completely humiliated, I laughed it off - hahahaha. Guess what? I'm not perfect. And I'm quirky. And I am who I am and that's the way it is. But I don't have to pretend as much with my hair extensions because these glorious things are real hair - someone else's real hair - and they are glued right in. Progress is fabulous!)

Rebuilding my life after leaving behind abuse at the hands of my alcoholic husband was... interesting.

I can't say leaving was awful. The time leading up to leaving was horrible. Making the final decision to leave was easy. I was sick. My husband spit in my face and screamed at me. That incident was the final straw. I knew I would never be in a room alone with him again. I simply would never allow him to scream at me again. Ever. Even the tone of his voice -- this high pitched bizarre scream --made my skin crawl. So leaving was actually quite a relief. All that pressure and evilness and insanity just... just... vanished.

I can't say it was traumatic. Living with abuse was traumatic. Once I left, the trauma was... over.

It was horrible still reading his hateful texts and emails and voicemails. But I controlled the situation at that point. I didn't have to listen to him. It took me months of the continued abuse before I refused to open another text or email from him or accept another phone call. I should have done it the day I walked out of our home.

And that's what it takes to leave an abusive husband. Just walk away. Pull the trigger. Stop communicating. Let the lawyers handle it. Grab onto your life and your sanity and don't compromise. Nothing is worth more than you, the victim. Put yourself and your children first and protect yourself as if everything depends on it.

An abuser thrives on exerting power over you. For my husband, the way he tried to establish and maintain power over me was to try and convince me that I was shit and without him, I just couldn't survive. He continually reminded me of his great (non existent) qualities. He heaped responsibilities on my head that made it extremely difficult for me to walk away. And then he sat back and put me down- again and again and again. At some point, you just have to do it- get up, walk away, do the right thing. And let the chips fall where they may.

Leaving is overwhelming. But if you start with a list and do just one thing a day, it becomes easier. Stay focused. One step at a time, one day at a time. Sooner or later, the abuse will end. There is a light at the end of the tunnel.

(Oh wow I'm heavy on the platitudes this evening!)

Here's my list to help get you started:

Step 1: Interview and select a good attorney. If it's expensive, sell your rings, china, TV sets... anything and everything. Trust me, it's worth it. No amount of stuff is worth your sanity, health and dignity- not even your favorite overstuffed chair, graduated pearl necklace, or Stuart Weitzman strappies, as hard as that last one is to fathom.

Step 2: Leave. Make a plan on where you're going to go. If you have children, ask an attorney what your rights are. Perhaps you can get an order forcing him out of the home. If not, prepare for your interim home.

Step 3: Tell your children, closest friends, your boss and most important co-workers, and a few close family members that you're leaving and why. Be honest. Telling others about the abuse is such a relief. No longer making excuses for abuser feels incredibly cathartic. Live your life in the open, in full honesty, and make no apologies to anyone (especially your abuser) for doing so. Do not protect your abuser's reputation any longer. Call it what it is and be matter-of-fact about it. It is not your job to make your abuser look good. In fact, I'll say that it's your job to be honest and truthful and whether he likes it or not is completely irrelevant to you any longer. Let me tell you how amazing it feels to come to that realization. After living in shame and embarrassment, you'll love living in the open- trust me. It'll be a ginormous relief.

Step 4: Close your eyes, take a deep breath, and walk out. Just go. Now don't look back and don't let him try to convince you that you were part of the problem, he's sorry, come back and it'll get better. When you hear this shit, say (let's go, you'll be coached on practicing this below): "Fuck you." How easy was that!

Step 5: Do not accept any communication from your abuser for a period of time. Let your lawyer deal with it. Take time to heal and enjoy your peace. You've more than earned it.

Step 6: Don't second guess yourself. You're doing the right thing.

Step 7: Learn to start loving and embracing your new life filled with truth and honesty. You no longer have to hear his excuses for his behavior ("I'm sorry, I acted that way because I was stressed and once I'm not stressed I'll be a really great guy again, the great guy you love." When you hear the likes of that excuse, look him in the eye and say - now practice this at home because it gets really easy - "Fuck you." If you don't use such saucy language as I do, now is a good time to start. Soon, that "fuck you" phrase will roll right off your tongue and it'll feel fantastic, empowering, liberating and truthful. It's amazing. Not take a deep breath, close your eyes and say it. See how good that feels?

I remember when I was still living with "Rob", my ex husband, I went on several sites to ask the question: Should I leave my alcoholic spouse? The resounding answer was: YES. Run, don't walk. It will never get better. It won't get better. Don't look back. Run like hell.

And, God forbid, if you're dating a man who is an alcoholic (or you think he might be), STOP. If you move forward with an alcoholic, you are setting yourself up for a lifetime of pain, anguish, confusion and horror. If you think that you can "cure" him when no one else was successful, you are wrong.

In my case, Rob's first wife left him because of alcoholism. I didn't know until it was too late. She couldn't cure him. I couldn't cure him. An alcoholic can only cure himself. And it takes years of intense therapy. That's what I learned from my ex husband's alcohol counselor. Even if Rob managed to quit drinking, he would still need years of therapy to learn adult coping and communication skills before he'd ever become "normal" and, even then, who knew if he'd become likable? And that's the pathology of an alcoholic. Feel sorry for him because he's sick but don't think for a second you will make it better because you can't. And when you hear his endlessly pathetic excuses on why he's drinking this time but he won't again, what do you say? That's right... "Fuck you." Perfect.

It's been almost two years since I left my abusive home. Yesterday, William surprised me with a get-away. I had never been to Logan, Utah. So we drove the two hours to the home of Utah State University. It is such a beautiful and picturesque town that I just melted when I saw it. We took a hike up into the canyon to Wind Cave. The views were unbelievable.

 

 

 

Afterwards, we went to Bear Lake and did some shopping and went to dinner where I had some of the best ravioli I've ever had. Best yet, we stayed in a gorgeous, romantic and intimate B&B called the Riter Mansion (http://www.theritermansion.com/). Breakfast featured apple pancakes with this delicious syrup that was made from fresh cream and brown sugar. Ok so it wasn't the lowest calorie breakfast but the taste was worth it.

 

 

 

And guess what? During our entire trip, not for a second did I wonder if William might start screaming at me. Talk about peace and joy and ability to live in the moment in a purely joyous way.

 

My whole point is this: Life gets better. Far better. It might seem impossible or implausible right now but happiness is waiting for you. I compare my get-away with William to my time with Bob and, well, the difference is stark. It's not to say that we don't argue (well, truth be told, in the almost one year we've been together, we've only gotten in two very tiny arguments), but we communicate incredibly well and we respect each other. And not once has he ever screamed at me, made excuses for his behavior, or blamed anyone else for his challenges. What a welcomed change. Not once - and I am not exaggerating - have I ever wondered if or when William would ignore me, yell at me, disparage me, or criticize me. He's never done it. And had I stayed with my ex husband, I'd stsill be living with all of the above. The absence of such abuse in my life is an incredibly amazing thing. I no longer am in a relationship with a "man" who has the emotional maturity of a mean 13 year old bully. There are amazingly good people out there, trust me. Now you get to go find one! You deserve it.

 

Now take a deep breath and plan your escape. 

 

What's worse than divorce?

I have a friend who is living in a horrific marriage. His wife is a sex addict and, from time to time, has "dates" with other men. He is living in a special hell that is hard to imagine. But he's sticking it out.

"We have children together," he says. "I don't want to put them through a divorce."

My ex husband, "Rob", and I have children together, too. Ripping my family apart weighed heavily on my mind, trust me. Divorce is awful. It hurts so many people-- the couple, the children, extended family, friends, sometimes neighbors. But there are worse things than divorce and an abusive marriage is one of them. Children living in high conflict homes actually have worse adult outcomes than children of divorce. Of course, how the adults handle the split helps. My divorce was ugly, though I tried in vain to change that. Some things are out of my control and I've learned to accept it and make as much peace with it as possible.

Bottoming out
I know the exact fight Rob and I got into when I knew that divorce was on our horizon and that every day I spent in the marriage was just borrowed time. Just a little background here before I get on with my story: Rob is an alcoholic. A highly functioning alcoholic. And Rob has two different personalities when he's drinking: 1) Happy Drunk: he gets slap-happy, silly, giddy, and excited. Usually Happy Drunk shows up when we are on vacation, or we are having a party, or we are at a party; 2) Mean Drunk: if there is any stress at all in Rob's life, he becomes hateful. Mean Drunk typically shows up when at home. If it's a Sunday, I could almost be guaranteed that Mean Drunk would surface (unless we were on vacation or having a party-- see #1).

Back to my story...

It was a Sunday during football season. It must have been MLK weekend because the next day was a holiday. Rob went to a Chargers game with his brother and I was home with the girls. The reason for the argument was completely unimportant. We were texting each other and I said, "Enjoy the rest of your weekend. The girls and I won't be home tonight." And with that, I put my phone down and gathered the girls together. "Hey girls, guess what? We are going to the Residence Inn tonight, just the three of us, for a little get-away. We'll watch movies, and get pizza, and go in the jaccuzi. Yay!"

I raced upstairs and started throwing a few things into a suitcase. Rob wasn't expected home for hours yet for some reason, I was shaking. Less than 30 minutes later, the girls were in the car and I was putting the suitcase in the trunk. And then I looked down the street and my heart nearly stopped. There was Rob driving up the street- and fast. OMG- he had left the football game early and raced home. I slammed my trunk shut, got into my car as quickly as I could and locked the doors.

Rob jumped out of his car and ran up my door and tried to open it. I was scared. What the Hell was he doing? He started screaming in that high-pitched Rob wail- bizarre and out of control, glassy eyed.

"You're so boring!" he screamed. And he started banging on my windshield. "Hey girls! I hope you have fun tonight. Your mom is so boring! Hopefully she'll have fun with you tonight! Have fun!" And he was pounding on the windshield again and again and again. I found my key, put it in the ignition and looked at the girls. Morgan had tears in her eyes. Siena in the back seat had eyes as wide as saucers. She was laughing but looking scared. She didn't know what response she should have.

And then, as if in slow motion, a thought entered my head. That thought probably lasted just a split second, but yet it seemed like an eternity. I was calm and it felt rational at that moment: "I could put my car in drive instead of neutral and run him over."

I swear to you, my Guardian Angel was with me that second. Because it was almost like a physical hand slapped me upside the head and said, "DRIVE AWAY." And, calmly, my shaking hands gone, I put the car in reverse and I drove down the street towards La Jolla and the serenity of the Residence Inn.

On our way to the hotel, Morgan looked at me and with the innocence of a child who still loves her dad immensely and said, "Why do you let him treat you like that?" And I couldn't answer her. I didn't know. And it wasn't ok. I felt sick.

While it would be more than a year before I left Rob, it was that question that made me realize that I was doing my children no favors by letting them grow up in an alcoholic home. It wasn't ok for me and it certainly wasn't ok for them. Showing them that such an unhealthy relationship was "normal" was incredibly damaging for all of us victims and it had to end.

That evening, I gathered the girls on my bed and we had a little chat. "I want you to know that Daddy has some great qualities. You love him and you should. He loves you. But my hope for both of you is that when you get older, you never allow a man to treat you like Daddy treats me. It is not ok."

Divorce is horrible. But I'm here to tell you that there are worse things than divorce and an abusive, volatile relationship is one of them. There is hope, though. If you're in a terrible relationship like I was, you can escape. And while it's tough, you'll survive it and life can be beautiful on the other side.

I'll be a panelist on Cure Panel Talk Show on Sept 26

I'm excited to be participating in the upcoming Cure Panel Talk Show on Sept 26 featuring Dr. Ajai Chari, from Mount Sinai Hospital. You can get all the info right here (my bio on the flyer is near the bottom). Here's the flyer for those interested in participating. Slots are filling up fast!

http://trialx.com/curetalk/panels/dr-ajai-chari-of-mount-sinai-hospital-and-myeloma-on-cure-panel-talk-show-on-26-september-6pm-et/

Dr. Chari is Assistant Professor Medicine, Hematology, and Medical Oncology. He served as an Assistant Professor of Medicine at the Columbia University College of Physicians and Surgeons, where he founded and developed the multiple myeloma program and was also a member of the stem cell transplant program. He then joined the nationally renowned myeloma program at St Vincents Comprehensive Cancer Center prior to its transition to the Mount Sinai Medical Center. He is the principal investigator on several clinical trials. He has also given numerous lectures on plasma cell disorders and has served as a moderator and abstract reviewer for the American Society of Hematology in this field. He is the Mt Sinai representative on the Multiple Myeloma Research Consortium.

I'm excited about becoming increasingly involved in the myeloma community, as well as the "divorced moms" community. I hope to become more involved in survivors of alcoholism in the future. I like trying to make a difference in my own small way.

Me, a columnist? My exciting announcement(s)

I am so excited to announce that I've been invited to be a weekly columnist! I won't give details quite yet-- I'll wait until my first submission is published. But when it is, I'll be sure to post. I just couldn't wait to share this bit of news. I've said it here many times but if knowing that my story helps others in any way- whether it be living with alcoholism, surviving a divorce, thriving post divorce, or kicking cancer in the ass, raising children as a single mom, or navigating the dating world - then this is all worth it.

Thank you, readers (almost 5,500!), for your kind messages of support. You mean the world to me. And that's no exaggeration.

My chemo brain (yes, it's real!)

Is chemo brain real? Yes it is! Learning this important fact is such a relief. Those of us who have undergone chemo have a real change in brain function that's observable on PET/MRIs. It means we're forgetful and foggy. I sometimes fumble for words, can't remember names, and even events. My children will sometimes bring up things I did, say, a year ago or even a week ago and I pretend like I know what they're talking about when oftentimes it doesn't even ring a bell. Case in point: Siena reminded me that when I first started treatment, I cut my hair really short just weeks before shaving all of it off. I seriously didn't remember it at all. After thinking about it a really long time, I think I sort of remember it. It's very hazy and I'm not sure that "memory" is even real.

Jenny, my @mpatient (www.mpatient.org) friend that I just met on Twitter and who lives near me, said that she was able to finally pinpoint which maintenance drug was giving her severe chemo brain: Thalidomide. I get an injection of velcade every Friday as part of my maintenance therapy. Since that will be ending for me in just a few more weeks, I'm hoping that Thalidomide will be taken off my medication list. If it is, maybe my chemo brain will go away. That would be so nice.

I just learned that my ex husband thinks that I need to get my ass back to work. In his opinion, I'm perfectly fine and I'm just lazy, enjoying the great life of ... not sure where he's going with this but in his alcoholic mind, who knows. But for anyone out there who thinks that fighting cancer is a fun walk in the park, let me assure you it's not. Every hike I take, every mile I walk, every trip I take is a huge sacrifice and a lot of hard work. I do it because it helps me fight this battle, keeps me emotionally and mentally healthy, and because I am going to embrace every single day that God gives me on this planet. No apologies.

In all honesty, I'm fearful of returning to work until my brain function is back to normal and before my long doctor appointments are well behind me. As it is now, my Friday appointments at Huntsman Cancer Hospital take up half my day. What employer is going to allow that? I need to lie down most every day for at least 30-45 minutes (sometimes longer) because I get that fuzzy strange feeling and racing heart that only being horizontal corrects. I have raging chemo brain and can't even fathom trying to juggle deadlines, deliverables, and expectations. If I get a small fever, I need to rush to the ER. And, thanks to my cocktail of drugs, I'm still severely immune compromised, which means I get colds at the drop of a hat. Some day I'll be ready to start a new job. But it's not now.

And, lastly, just because we cancer warriors might "look" healthy and happy and well, doesn't mean we are. Even during the midst of my stem cell transplant and major chemo, I never looked sick for one minute. I wore great wigs, put on fake eyelashes when I had no eyelashes, put on makeup and put on the cutest clothes I had. I looked as healthy as one could be. But, obviously, looks are deceiving. Here are a few photos taken at my sickest. 









Say what you will, I don't think I look like someone in the midst of chemo and who happens to be bald.

Every single thing I did back then took enormous energy and planning. I pushed myself because, more than anything, I wanted to look and feel normal, even if I didn't. Every time I got out of bed and stepped out of the house was my way of overcoming my illness and prevailing. To think that my accomplishment is looked at in contempt by my alcoholic ex husband is to be expected, as this is the same "great" guy who spit in my face on the day I was being scanned for tumors and kept up the bizarre verbal assaults throughout my two transplants. So while anything smacking of goodness and decency is lost on the likes of this "man", to the rest of you, when it comes to us cancer warriors, what you see is not necessarily what we feel. Please keep that in mind.

Odd that I feel like I need to justify any of this at all. I suppose my ex husband knows something that my oncologists don't. Or maybe he just needs another drink.

And so I'll end my rant. Sometimes rants are cathartic. I think this one was necessary for me today. I feel a little bit better already.

Meeting Jenny. My new raison d'etre. And the importance of clinical trials.

I've said on this blog many times that for some reason, God led me down the crazy path my life has taken since January 2012 when I was diagnosed with Multiple Myeloma, fled an abusive alcoholic husband, and moved two states away-- all at the same time. He has a plan for me and my job is to listen, and be flexible and open minded.

About a week ago, I got a DM on Twitter from @mpatient. "From your blog, I think you live in Utah. So do I." I looked up @mpatient's profile and Tweeted back. @mpatient is Jenny, she lives just a few miles from me, is just one year older, and was diagnosed with Multiple Myeloma in 2010. She, too, is treated at Huntsman Cancer Institute (I can't believe we've never "run" into each other, considering I'm there all the time!) and had tandem stem cell transplants (just like me), followed by a year of maintenance therapy (of which I'm almost done!), and then one more year of another lighter type of maintenance (mine is still TBD). She's in remission (hooray!).

Jenny and I met for lunch on Tuesday and again on Friday (we both had appointments at Huntsman so we went up to the cafeteria for a late breakfast-- me pushing my IV around). Anyhoo I felt like I just met one of my new best friends. We share so much in common and our passion is, of course, trying to find a cure for cancer, supporting fellow cancer warriors, and anything else in the cancer community.

What makes Jenny unique is that she started a radio show in which she interviews top researchers and doctors of Multiple Myeloma. She is on a quest to speed up a cure of Multiple Myeloma, as she doesn't want to be in and out of treatment, remission, and so forth forever. She wants to be cured. Wow- me too! Check out her site at www.mpatient.org. Better yet, this interview says it all http://www.mpatient.org/dr-don-benson-discusses-the-benefits-of-participating-in-a-clinical-trial/  (By the way, how she finds the time to do all this stuff is remarkable considering she has SIX children!)

One thing Jenny learned is the critical need for us cancer warriors to get our butts into clinical trials. In childhood cancers, some 75 percent of kids are in clinical trials. Parents tend to pull out all the stops in getting their children well. When it comes to adult cancers, the participation drops to something like 5 percent. Oh my gosh. Why the discrepancy? Because us adults have competing priorities-- kids, jobs, commitments. So we tend to sit back and wait for someone to cure us. Now that I think about it, I think I should do something more. So what can I do? What can any cancer warrior do?

• Participate in a clinical trial!

And I can also help Jenny promote her site, her important work, and spread the word that clinical trials are a critical necessity in finding treatments and cures for cancer. And, cancer warriors and caregivers, here's some important info: Rarely does anyone in such clinical trials receive a placebo. Participants either get standard of care or the next best upcoming treatment. I didn't know that but I do now. And so do you.

So what are we waiting for? Ask your doctor, visit mpatient.org, and search www.clinicaltrials.gov.

Back to meeting Jenny. I firmly believe that God connected us together for a reason. Maybe we can make a difference in the cancer world.

I'm featured on Cure Talk! Read the interview

Cure Talk

I am so excited to have been featured in an interview for Cure Talk. To read the interview, click here:

http://trialx.com/curetalk/2013/09/curetalk-interview-lizzy-smith-on-multiple-myeloma-divorce-and-finding-love-once-again/

Thanks, Priya at Cure Talk! It's been a pleasure.
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CureTalk Interview: Lizzy Smith On Multiple Myeloma, Divorce, and Finding Love Once Again

Imagine fighting multiple myeloma and a divorce from an alcoholic husband simultaneously. Traumatic, draining is what comes to my mind. Lizzy Smith has survived the journey with aplomb.
Read on to know how this young mother with 2 girls ages 7 and 13 is winning her journey with multiple myeloma and also dating again and living her life to the fullest.

Me: When and how did your multiple myeloma diagnosis happen?
Lizzy: I was diagnosed in Jan 2012 at age 44. I was in the midst of deciding to leave my alcoholic abusive husband. I went to his alcohol therapist and requested that they put me on work stress leave for a few days so I could plan my escape from the marriage. While I was on that leave, I went to my primary care doctor and said that I was just exhausted and felt there just was something ‘not right’ with my body.

He didn’t see anything wrong but ordered a CBC (blood panel) to ease my concern. The blood work showed severe anemia but my iron levels were normal. More blood work. Then body scan, urine test, and bone marrow biopsy. I had never even heard of Multiple Myeloma before. I always took care of my physical body. I ate healthy, I exercised, I didn’t smoke or drink. No history of cancer in my family. This was quite a shock.

Me: Did you get any warning signs, that all was not right? If yes, what were they?
Lizzy: Sort of at age 43, I got pregnant twice. Both pregnancies ended in miscarriage so I thought the mild symptoms were from the pregnancies. I was very tired (though I was working many hours, had 2 children to raise, and was trying to survive a horrible marriage to a very emotionally abusive alcoholic, so being exhausted was ‘normal’ given the circumstances. I had ribcage pain. I used to be a runner and I just couldn’t run anymore so I switched to power walking. I was becoming increasingly forgetful (in retrospect, this was from anemia). I had night sweats.

Me: Multiple Myeloma and a crumbling relationship with an abusive partner. It must have been tough. How did you cope?
Lizzy: It was horrible. The day I went to the hospital for body scans, the X-ray tech said they were scanning me for body tumors because they suspected I had cancer. I started sobbing. I went home and waited for my husband to arrive.

When he did, it was clear he had been out drinking. I started sobbing and said, “They think I have cancer. I’m so scared.” And he responded by screaming at me so loudly that he was spitting in my face. He accused me of being a drama queen, lazy and stupid. I called the police, had him removed from the home, packed up trash bags with clothing, and left him. I moved to Utah where my parents were living and became a patient at Huntsman Cancer Institute at the University of Utah. Their Multiple Myeloma clinic is among the top in the world.

Actually divorcing my husband while entering treatment provided a strange break from the fear of cancer. It was a diversion that may have been helpful, if that makes sense. Looking back, honestly, I don’t know how I survived it all. It was a lot. I’d be at clinic getting blood transfusions or chemo injections and get these awful text messages from my husband. It was just incredibly odd and weird. I just kept telling myself, ’One day at a time.’ I focused on praying a lot, meditating, yoga breathing. I took baths and tried to focus on the love I felt from my family, children, and friends. There were a lot of people praying for me; it kept me strong.

That was a powerful lesson: One day at a time. The most important things were my health and family and I just kept coming back to that.

Me: When did you decide to write in your personal experiences in your blog Lizzysmilez? Why did you decide to do so?
Lizzy: I decided to start blogging in December. I had so much pent up feelings and I wanted to share so many stories and I didn’t want to forget the things I had been through and what had led me on the path of leaving my husband. I was watching ‘Sex In the City’ one night and I thought, ‘Hey, I could write my experiences like Carrie does. It won’t be for a newspaper, but I can write for the cyber world.’ And so my idea was born and I just started writing.

It’s been incredibly cathartic and some day when my children are older, if they ever want to know how and why things happened, they can read it.

Me: What is your current treatment regime now? Do also mention any specific side effects that you may be experiencing with any particular drug. 
Lizzy: I have about 6 weeks left of my 1 year of maintenance therapy. I first started treatment with two tandem auto stem cell transplants. I was close to remission after the first one. My current maintenance plan is:
-One pill daily of thalidomide. I am lucky that I have had no neuropathy and I’ve tolerated it extremely well
-One/week I take 20 mg of dex.
-One/week I get an injection of Velcade

The toughest side effects are: extreme fatigue 2 or 3 days post injection. I personally think it’s me coming off the 20 mg of dex. I also have chemo brain. I struggle to remember names and places and my brain just works slower than it used to. Sometimes, I’m just tired and forgetful and I can even feel ‘fuzzy’ where my heart races and I need to lie down. Honestly, though, I’ve done well with side effects. I work around my fatigue and I often push myself beyond what I think I’m capable of.
I do Bikram yoga, I take long power walks, and I’ve even started hiking. I’m doing my best to build up my strength to where it once was.

Me: You have mentioned in your blog that dating, in spite of battling with multiple myeloma has not been difficult. Any learning’s that you would like to share with our readers, regarding beginning a new relationship?
Lizzy: I am as honest as I know how to be. With my boyfriend of 10 months, I told him about my diagnosis about four weeks after we started dating. I decided I trusted him and if the cancer news scared him and he couldn’t handle it, it was ok. He was terrific and he’s incredibly kind and supportive. Being a cancer survivor has made me a better person and it shows in the way I treat everyone. I think there’s not ‘one size fits all’ when it comes to sharing health news with anyone new. Share it when the time is right, no apologies or second guessing yourself.

Second, life is too short. If you start dating someone new and he or she doesn’t seem like a great person to have in your life, don’t stick around. 

Me:  What would you say are the 2 most important things required in successfully battling an ailment like multiple myeloma? 
Lizzy: 1. A great support system. Not only must your caregivers be trustworthy, but also it’s important that they help you stay emotionally strong. I knew from day one that I would beat this cancer or, at a minimum, learn to live with it. My parents were like-minded. We’ve always been ready to win this battle.
2. Don’t get overwhelmed. My nurses used to start rattling off all the upcoming treatments and procedures. It made my head spin. I finally asked that they just tell me what was coming up over the next few days. It was much easier that way.

Thank you, Lizzy!

Thank God for Obamacare (or at least portions of it)

Since September is, after all, Blood Cancer Awareness month, I'll focus on one of the most critical aspects of fighting this disease (or any disease, for that matter): high quality health insurance. Because unless you hit the lottery and win, like, $300 million dollars, you can't afford to pay for these treatments out of pocket. Here's an example that will make your toes curl: one of my medications (Thalomide) retails at $7,500 per months. Yes, per month (that's no typo) and I take it every day. Thanks to my insurance, I pay $40 per month. And if I couldn't afford that medication? Well, too bad. So on to my post for today...

I was once a conservative Republican. Seriously, I worked for the National Rifle Association in Washington, DC for over five years. Enough said. But over the years, I've become far more mainstream and, in some areas (mostly on social issues), quite liberal. While I didn't vote for Obama in this last election, I gotta say that right now I'd like to kiss the ground he walks on. Pieces of Obamacare are being implemented on January 1, 2014 and the changes can't come soon enough. These Republicans who say that we should have a complete repeal of Obamacare deserve to be thrown out of a jet flying over Everest.

Right now, because I am on disability, I am paying for COBRA benefits for my medical insurance. Thank goodness that I had a great job and I could get excellent coverage back when I was working. When the time came, I switched over to COBRA. While it's pricey, I have no complaints, it's worth every penny. But sooner rather than later, I won't be eligible for COBRA anymore. And then what? With a pre-existing medical condition, I'd be uninsurable! And, I might add, for anyone going on Social Security Medicaid, there is a two year gap between the time you get approved for benefits and the benefits actually kicking in. And for those two years, if you have a pre-existing condition? Well, you're out of luck! I suppose the answer would be to renounce US citizenship and hope that another country, like Cuba or India, would take you in and give you free medical coverage.

But as of October 1, open enrollment begins for the 2014 calendar year and guess what? No one can be denied medical coverage! They can't even ask you about pre-existing medical conditions. I can't believe it has taken this long in this great, prosperous, country of ours.

You know what really sucks, though, is that it took me almost an entire day and probably 15 phone calls to various attorneys, government agencies, my former employer and my insurance carrier to figure all this out. The red tape is horrible and thank goodness I have the energy and mental capacity to do all this stuff. Because when I was in the midst of my stem cell transplant, I can't fathom being able to even do that. And so the sickest of the sick probably don't have a lot of energy to navigate anything-- and they're the ones who need help the most. So not cool. Or right.

I don't know that Obamacare is going to be perfect. But something has to be done to begin moving in a better direction when it comes to healthcare in this country. In the USA, we spend more of our GDP on healthcare than any other developed nation-- and we get the least for our dollar. At least Obamacare is a step in the (hopefully) right direction.

By the inch it's a cinch

September is National Blood Cancer Awareness Month. So for all of those out there who are in treatment, starting up treatment, helping someone who is in treatment, or just interested, this battle can be really hard and overwhelming. When I first started on this incredible journey, I would listen to my nurses, coordinators and doctors describe what was to come. All the doctor visits, tests, medications, and other things that were in store for me (aka "my treatment plan"). It would make my head spin. All I really heard was "wah wah wah wah wah." Finally, I stopped them. "Just tell me what's coming up over the next week," I said. And that helped. One step at a time. If I had to stare at everything before me, I just couldn't do it. Which brings me to my latest...

After some 20 months of treatments to fight Multiple Myeloma, I am quite weak. I've done my best to stay active during this time but I'm not nearly where I want to be. Now that the girls are back in school, I have more time to focus on me. In addition to wanting to get stronger physically, I also like to get out and explore Utah. So on Tuesday, William and I hiked up to the Timpanogos Cave and on Wednesday, we hiked up to the big Y above the Brigham Young University campus. Both hikes were strenuous for me, but the hike up to the Y was really hard. It challenged me and kicked my butt.

Oh my gosh... I hiked all the way up there! It took forever for me, I can't say I looked pretty or graceful doing it. But I tried it, I did it, I jumped for joy! Ok, I didn't have the energy to actually jump, but I wanted to!

On our way up, I had to stop several times to take a break. As I was panting, trying to catch my breath, and sweat was dripping into my eyes and nearly blinding me (I looked really pretty, let me tell you), William was barely breaking a sweat. How unfair was that? He decided that he was going to be my workout coach. And as we marched up this very steep trail, William told me a story that I won't soon forget. And I'd like to share it with you:

Years ago when William lived in Seattle, he was at a church sermon and the preacher was sharing a personal experience. The guy was a portly, heavyset guy and he was riding his bike on a trail. He came to a part that was very steep and quite a distance. There was no way he could get up that hill. No chance. He wasn't up for it. He wasn't strong enough. But he started peddling, put his head down and stared only at his front tire, and refused to look up to his destination. By just staring at the small section directly in front of him, he took it one tiny bit at a time. He made it up the hill, much to his surprise. He said that if he had looked up at how hard and far it was to his destination, he would have given up and never made it. Lesson learned.

And William said that walking up to the top of the mountain up to the Y should be the same for me. Keep walking. If I got really tired, don't stop, because starting back up again would be that much harder. Slow down, take one tiny little step after the next, and just keep going. Stop looking at my destination and just look at what was directly in front of me. Good point, I tried it. And guess what? From that point forward, I didn't stop. Not once. Not for a second. I made it the whole way up to the top. I looked and smelled scary but there I was, all the way to the top! And the view was spectacular and I felt like a champion! Whoohooo for me!

 

Here I am. Hot, sweaty, smelly, dirty and tired. But I conquered my own mountain. I needed a huge long nap afterwards but so what? Personal goal: met!

So that's my advice to you, fellow cancer warriors or champions... or to anyone. As my dad likes to say, "By the yard it's hard, but by the inch, it's a cinch." Keep your eye on what's in front of you, keep going, and don't give up. The reward at the end is amazing.

September is Blood Cancer Awareness Month

If you're so inclined, please do something in September for blood cancer. Get registered on the national bone marrow registry, donate plasma or blood (I needed platelets and blood transfusions every few days when I was first diagnosed), donate money to Multiple Myeloma Research Foundation, or run a race in honor of a blood cancer. Anything helps us to fight the good fight.

Mourning in Long Beach

Siena and I flew to Long Beach over the weekend for Jim's funeral (he passed away from mesothelioma). Jim is the dad of my best friend, Julie. Every time I visit Julie and Shane, I feel like I'm home. And this weekend was incredible. I just needed to be with my second family during this time. At the airport on our way out, we ran in to my former mother in law, Peggy. It was quite surprising to see her in the line of security. We grabbed a burger together and chatted for just a few minutes. After we said goodbye to her, Siena was really bummed that she couldn't see Daddy, too. It brought up a lot of questions from her, like when she can see him again, why she can't talk to him, why he doesn't see her anymore. It broke my heart. When I told Morgan that we ran into Grandma Peggy, she was really sad. Peggy is a nice woman. I like her a lot. With my ex husband, the apple fell very, very far from the tree. Like miles and miles away.

Our weekend couldn't have been better. Siena and I never do one-on-one trips and this was nice and bonding. I wish Morgan could have joined us but she had a big soccer tournament all weekend and couldn't miss three games so she stayed at home. It was really fun spending Mommy-Siena time together and we got to be fun and silly, at times I felt like I didn't have a care in the world. That feeling doesn't come often enough.



The funeral was touching-- a real celebration of Jim's life. An avid hunter and fisherman, the guys in the family spray painted his casket in camo. The girls wore camo dresses or skirts, and the boys were in camo bowties.


At the family viewing and prayer just prior to the closing of the casket, I couldn't stop crying. I know I'll see him on the other side and he is free from the pain he was suffering in the final weeks of his life. But I felt such love around these people and I am so grateful that he raised such a great daughter and had such a strong, amazing family. I have benefitted immensely from it. Looking at a body without its spirit renews my faith in life after death. I know that his spirit is gone and that his body is just an empty shell. I wondered what he was doing at that moment. Who was he visiting with? Was he watching us?

Julie and her brother, Jeff, and sister, Vicki, all spoke. I've never seen Julie speak in public and she did a fabulous job. So did Jeff and Vicki, I might add. Then two of Julie's children, Jake and Kate, read letters that they wrote to Jim. Oh my gosh-- they were so sweet, their grief so real and tangible, and yet so hopeful that they'll see him again (though we hope not soon!). The positive impact that Jim had on the lives of so many is something I hope to replicate. Our relationships and those we love are the only things that matter, after all. And it's safe to say that Jim led a purposeful life. The lives of those around him were far better because he was in it. We should all be so lucky.

The weekend flew by and I didn't want to leave. We went to the beach, Knotts, and went swimming. Overall, my health held up except I got so tired during the lunch that followed the funeral, I thought I was going to pass out. I took a nap that afternoon. I've determined that most days, I just need a short catnap. Thirty minutes probably will suffice so I'm just going to schedule it in.

Vicki, me, Sherry and Julie



We'll be back in Long Beach next month and it can't come soon enough.