Hair, oh crazy unrecognizable hair... From baldness to THIS. To dye it, or not?

My latest via Myeloma Crowd. (Spoiler alert: I took the plunge and dyed. Is this the right decision? Who knows.)

To Dye or Not To Dye. A Million Dollar Question

BY LIZZY SMITH for Myeloma Crowd

My hair is finally growing back after many months of baldness. During the time of “no hair” I wore wigs or caps, no exceptions.

And then about 45 days post melphalan, I started seeing the first signs that my hair was growing. Hooray! Last month, we went to Costa Rica and Nicaragua and I just couldn’t wear a wig in the heat and humidity so I went natural—either the small amount of hair on my head was good enough or I wore hats to keep my scalp from burning.

And when I came back, it was still a bit chilly so hats were the simple, and most comfy, choice.

Today, I have maybe two inches of hair and I have ventured out, even among people I know, with it as is. I’ve been stopped a few times asking who does my hair. So apparently I don’t look like Cancer Girl anymore—some people think I did this on purpose. It is different than my long hair. I’ve had to start developing a new “brand” on how I see myself and how others might see me. Short hair is stronger, more angles, harsher. Ok, fine. I think it ages me but perhaps I’m just getting older,  (and I’m happy to age, because that means I’m still alive).

But… my hair is coming back all sorts of grey and I don’t like it. I desperately want to color it light blonde—like Mia Farrow in Rosemary’s Baby.

But what is concerning me is the toxins I may be exposing myself. Pre cancer diagnosis, I colored my hair about once per month. I also got Brazilian blow-outs, which make one’s hair super silky, shiny, and straight. Did this contribute to getting multiple myeloma? When I did my first tandem stem cell transplants and my hair grew back, I colored my hair about once per month. No Brazilian blow-outs this time—I decided the toxic risks were too great. I also switched up all my haircare products, like shampoos, conditioners and hairsprays, to organic-type products. No parabens, at a minimum. There are a surprisingly great number of products that fall into this category. 

But now it’s time to decide… color or not? Grey or blonde? Are hair dyes toxic enough to cause cancer? I did a little research and found this from the American Cancer Society. Here are excerpts that summarize findings…

It’s not clear how much personal hair dye use might raise cancer risk, if at all. Most studies done so far have not found a strong link, but more studies are needed to help clarify this issue.

Most of the studies looking at whether hair dye products increase the risk of cancer have focused on certain cancers such as bladder cancer, non-Hodgkin lymphoma, leukemia, and breast cancer. These studies have looked at 2 groups of people:

• People who use hair dyes regularly
• People who are exposed to them at work

Bladder cancer: Most studies of people exposed to hair dyes at work, such as hairdressers and barbers, have found a small but fairly consistent increased risk of bladder cancer. However, studies looking at people who have their hair dyed have not found a consistent increase in bladder cancer risk.

Leukemias and lymphomas: Studies looking at a possible link between personal hair dye use and the risk of blood-related cancers such as leukemia and lymphoma have had mixed results. For example, some studies have found an increased risk of certain types of non-Hodgkin lymphoma (but not others) in women who use hair dyes, especially if they began use before 1980 and/or use darker colors. The same types of results have been found in some studies of leukemia risk. However, other studies have not found an increased risk. If there is an effect of hair dye use on blood-related cancers, it is likely to be small. 

Breast and other cancers: Most studies looking at hair dye use and breast cancer have not found an increased risk. For other types of cancer, too few studies have been done to be able to draw any firm conclusions.

Many people use hair dyes, so it is important that more studies are done to get a better idea if these dyes affect cancer risk.

For me, all of this is… clear as mud. So am I going to color my hair? Well, vanity won the day.

Here I am at the salon "before."

...And after

I love it. And I’m now on a quest to find a good hair color that is non-toxic and one that my stylist will agree to try on me.

Until then, when I can't figure out what to do with it, bandanas and baseball cps rule the day.

To read the original article on Myeloma Crowd, click here.

An email to the "other woman"

My latest via Divorced Moms. In this instance, the "other woman" needs a good bitch slap.

An Email to the "Other Woman." Fu*k You. You Deserve the Asshole
By Lizzy Smith for Divorced Moms
                   

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June 29, 2016

Just last week, a friend of mine, “Becky,” received an email from the “other woman." Granted, when this woman ("June") became part of the picture, Becky and her husband, “George” were in the midst of a horrible marriage. He was addicted to prescription pain medications and he had all the personality traits and behavior of an addict—explosive outbursts, blaming, sorrow, stealing money, hiding, lying, and more. Becky and George had two young daughters and their relationship was toxic for everyone. Becky was going to file for divorce and she was getting all of her ducks in a row so she could kick George out of the house soon. She was saving money, had selected an attorney after interviewing several, she had her “single mom’s budget” carefully figured out, and she was getting emotionally prepared.

And then Becky found out that George had a profile on a dating web site. That was the final straw. Becky moved out of their home, taking the two children with her. Everyone’s life was in turmoil. The children were confused and hurt. Becky was unable to eat or sleep. And George… he had a new girlfriend already (yay for him! who needs to recover from a relationship when he can just hop into another one instead?) That's right, George had moved on in a matter of days, and he loved throwing it in Becky’s face. “See what a catch I am?” he texted her once. “I already have a new girlfriend and you will never find anyone as great as me. You’re a single mom—hahahaha.” Mature, right?

Flash forward to a week ago when June emailed Becky. June had just kicked George out of their home. She wanted sympathy and understanding from the one woman who knew her hell—Becky.
“George is a sick man,” June wrote. “I am done with him.” And June spent the next several paragraphs telling Becky of some of the horrible things George had done in their time together. He lied, used pills, stole her msedications, screamed and accused. He blamed June for his addiction. He promised to get well (but he didn’t). Gosh, this was all sounding so familiar, thought Becky. June was describing her marriage almost to a T.

She needed a couple days to process this new information. She was initially … thrilled. She felt vindicated. George wasn’t really a great man and father who was just in a bad marriage with her. George was still an addict. His behavior hadn’t changed a bit despite a new relationship. The bad marriage and divorce weren’t Becky’s fault after all, as George had tried to convince her it was. In Becky’s world, everything seemed right again.

Then Becky became angry. She had so much to say to this woman.

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Custody Transitions. Fabulous Reource for Easing Anxiety

                                  

Co-parenting. Just this word is enough to give many of us moms hives. We must cooperate, however-- and cooperating with our child's father is not only imperative, but it is in our child's best interest. After all, if the court has ordered it, if you try to impede cooperating in any way will not bode well for you.

 

And if you are co-parenting, this also likely means that you have some kind of shared custody arrangement with your ex. But how best to manage the transition of a child going from one parent's home to the other? This can be Hell, both for parent and child. Many parents I know say that it takes at least a day or more for the child to "settle" into their other home. Some children suffer tremendous anxiety and emotional outbursts. I know some parents who cannot even help with the custodial switches on their own-- they require a friend, family member, or someone appointed by the court to pick up or drop off a child. Don't know that a child doesn't sense this tension and that it doesn't emotionally hurt. 

 

So how to make that transition work best for your child? One resource is by helping a child visually understand which days are "switch" days. And, hence, today's article, which is written by Katie Bettridge, co-parenting expert and CEO of Enlightened Littles (www.elittles.com). I think you will find this an incredibly valuable resource. Best of luck!

 

The Birth of Elittles. A Personal Co-Parenting Story

"The judge came to a decision. Your parenting time will begin Fridays after school and end before school on Monday mornings."

My heart sank. I couldn't speak. I couldn't breathe. Oh my god. I was the weekend parent. Of my own child. That wasn't enough. Not enough time to raise my child. Not enough time to enjoy watching him grow up.  Nothing could fill the void that I felt.  I had lost my boy. My baby.

Like many of you, I too understand the gut-wrenching heartache that often comes with sharing custody of your children.  After 10 years of co-parenting, I finally have it mastered....I think. For me the first decade was a brutal trial-and-error series of lessons that tested my very essence, patience, sanity, strength and resilience. It challenged everything I thought I knew about what it really means to be a loving parent.

From sippy cups and footsie jammies to band practice and elementary school - the years quickly flew by and somehow we found our own unique stride. There were, of course, many bumps along the way. What I found made it most difficult at the beginning was having such a young child that didn't understand the new parenting schedule. How can you expect a toddler to understand that a judge, a stranger, now dictates how often he can see each of his parents? Despite explaining many times and in many different iterations that "...both Mommy and Daddy love you so much, that we've decided to share time with you....etc.", he was still very much confused by the new parenting routine. Tortured even, starting each and every day unsure of which house he would reside in, which parent he would be with, or when to expect the stressful transfer/exchange days.

My son's confusion around the new parenting schedule was evident in his demeanor. I noticed that he seemed very anxious and stressed, which made his ability to relax into his current home difficult for him. Being too young to read or be able to interpret events on a typical written calendar, I created a Parenting Time Calendar just for him - with the use of "Mommy" and "Daddy" icons to represent which day was a "Mommy" day for him and which day was a "Daddy" day. Almost  immediately, he took to the calendar and seemed liberated by finally knowing what was  coming up for him. His little Parenting Time Calendar quickly became a mainstay in our home, and I  noticed that when he would look up at his calendar and see that it was a "Mommy" day, he could relax into my home that day knowing that there wouldn't be a stressful transfer that would interrupt the comforts of home and play for him that day. Even transfer days seemed a little less stressful for him, since he could see those days coming up for him in his week on the calendar. Since then, I've been on a mission to develop a lovingly enlightened line of tools and toys to help 'littles' understand big things. Our "My Two Homes" Co-Parenting Calendar has been invaluable to my child, and it is my greatest hope that your family can benefit from them as well.

If you end up purchasing any of the items on Katie's web site (I do NOT get a "cut", I assure you!), simply type "BLOGLOVE" at checkout for a 10% discount.

Our summer kick-off road trip! Discovering America (or at least Cody & Yellowstone)

My latest via Divorced Moms. I am so excited to start our summer with my daughters. One more amazing memory-creator.

Chucking It All, Roadtripping & Accumulating Memories

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June 23, 2016

I have written about this before but I promise you this: road trips ROCK. I used to HATE them. After all, who had time to drive when there was an airport nearby and I needed to get back to work.

But I have since changed my tune. When my daughters and I get in the car and start driving, and I force them to put away their electronic devices and stay awake, we have real conversations. We laugh, share stories, and talk about life. And, yes, there is the lovely downtime for the non-drivers. Taking in the scenery, listening to music, napping... And, seriously, the USA is amazing. There are fascinating places in almost every corner of every state and if you are flying over them (or skipping a trip completely), you will miss out.

And so it goes that my daughters and I are packing up and leaving town for several days. We are following my best friends, Julie and Shane, up to Cody, Wyoming and Yellowstone. We will hike, float rivers, perhaps go to a rodeo (I haven't decided yet if I can stomach one), and check out the Buffalo Bill Museum. Serious bonding and exploring time with my children and best friends. I am really excited. When we are done, the girls and I are driving home. Julie, Shane and their children are continuing on. They are driving across the United States in a quest to see as much of the country over the summer as possible. Their itinerary leaves me green with envy. Neither Julie or Shane are wealthy. They are school teachers so they have time. And they made some HUGE life-changing decisions to make this happen. I'll let you hear Julie tell it from her own lips (or, in this case, fingertips)...

Our Homeless Summer
We are off!  It doesn't seem real yet. I mean, I am driving and heading toward Utah but it doesn't seem like I am going to be gone for the next two months. Everyone keeps asking where I am going to live when I get home.  I don't know! For real, I DON'T KNOW. What I do know is that I will be living at Lizzy's in Utah for the next four nights and then in Cody, Wyoming. I have an idea where I will be "living" beyond that but I prefer not to think so far in advance. Right now is plenty enough to handle. One day at time. :)

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Not Shoving "Square" Children Into "Round" Holes

I just got back from Long Beach where I went to my best friend's sister-in-law's memorial. I am so lucky to have such close friends. I really think that few people are blessed with friends like I have in Julie and Shane. We have been through a lot together. I trust them with my life, and the lives of my children. How awesome is that? And as we gathered for Sherri's memorial, it was amazing to be surrounded by so much love. Nothing in my life matters more to me than the relationships I have with others. I am finally, at long last, living the life I always wanted. Surrounded by people I love and trust, traveling, and working on issues I am passionate about (cancer, health and wellness, and survivorship). Cancer sucks. I hate it. I wish I never had to deal with it. But life handed this to me and there have been upsides. I hope to high heaven that those of you who are healthy never need to get a devastating health diagnosis to do the same.

Peace and love,
Lizzy

She May Not Live The Life I Pick For Her. And So What?
By Lizzy Smith
                   

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June 14, 2016

I have learned so much about me and life in general in my grown-up years. I thought I had it all figured out and then - bam! - another Life Lesson hits me smack in the face. I wish I could get a re-do but since I can't, I can try to take my life's learnings and incorporate them into my daily grind. Because if I don't, what's the point?

The latest is this past weekend. I flew to Long Beach for the memorial gathering of my friend who just passed away from ovarian cancer. Over the course of five days, I hung out with people who are like my family. One afternoon, my best friends (who are married) Julie, Shane, two of their daughters and I drove to Huntington Beach and went to a Farmer's Market. There were some very interesting people selling their fruits and veggies, organic herbs, various oils, and services that ranged from acupuncture to hypnotism and everything in between. I talked to one woman who was particularly fascinating, with her long flowing hair and skirt. A free spirt, she was. Well traveled, educated, and living a life that did not include windowless office cubicles and hours sitting in traffic every day (not that there is anything wrong with that!). I envied her. How come she got to travel the globe and live a life I envied and I didn't?

Later that day, Julie and I talked about The Meaning of Life. She and her husband have recently made some super huge life changes, which include selling their house and most of their furniture and downsizing in a ginormous way. Not only did shedding all that "stuff" save them a lot of money, but it also saves them a ton of time taking care of it all.

"When you and Sherri got sick, I realized that I was living a life I didn't want," Julie said. "I want to travel and live. I do not want all the trappings anymore. I don't think I ever did." Julie and I are so similar in this respect (which is why we are best friends)-- we both are on a quest to see the world, as much of it as possible RIGHT NOW. We want to create memories and strengthen relationships. How did I end up so off course for so long?

Expectations. That's why.

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Fabulous ideas for the guy in your life for Divorced Moms

I am on my way to the airport to catch a flight to Long Beach for my friend Sheri's memorial service. She died last week from ovarian cancer. I am also going to spend time with the people I love beyond measure, my best friend Julie and family. Until then, I leave you with my latest post via Divorced Moms.

Peace & love,

Lizzy

8 Super Nice Things to Do For Your Guy (Without Breaking the Bank)
by Lizzy Smith for Divorced Moms                   

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June 08, 2016

With Father’s Day fast approaching, here are ideas to get your creative juices flowing for the guy in your life.

Offer to entertain his kids while he has “guy time”

I am constantly amazed at how many women don’t like their guy to go out with his friends (or do anything without her). This is a really bad idea. Show your guy you trust him and recognize his need to do things he loves sans you. (Make sure before you offer to take care of his kids that you know them and that he—and their mother-- is comfortable with the idea.) There are plenty of cheap things to do with children—go for a hike, bake cookies or make dinner, rent a movie you all like and stay in, go to a local public swimming pool or lake. Have suggestions for the kids but ask them what they’d like to do so they get the final say.

Give him a massage or foot rub
You need not be a great masseuse but it doesn’t matter—it’s the thought and human (non-sexual) touch that matters. You can either make this romantic by lighting candles and putting on soft music or put on a good movie or sporting event while you give him a massage.

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The Lion, The Gazelle & The Pesky Myeloma Cell. I can't wait for a cure, can you?

I am really proud of this post because it is a very hard topic to explain (high risk myeloma disease). Plus I am in the video below!

The Lion, the Gazelle & the Pesky Myeloma Cell. High Risk Disease and What to Do About It

By Lizzy on June 3, 2016 Life With Multiple Myeloma, Myeloma 101, Myeloma Crowd Research Initiative

BY LIZZY SMITH for Myeloma Crowd

Every morning in Africa, a gazelle wakes up.
It knows it must run faster than the fastest lion or it will be killed.

Every morning a lion wakes up.
It knows it must outrun the slowest gazelle
or it will starve to death.

Not long ago, I heard Dr Rafael Fonseca of Mayo Clinic in Scottsdale, Arizona use this analogy when describing myeloma cells and, especially, the myeloma cells that survive treatment.

Dr Fonseca said something like this:

The lion knows that he doesn’t need to be the fastest, he just needs to be faster than the slowest gazelle. And, likewise, the gazelle knows that he doesn’t need to be the fastest gazelle in the heard to survive, he just needs to not be the slowest.

And so the contest between the lion and the gazelle begins, which is a lot like the contest we patients wage against bad cells when we discover we have myeloma.

Think of myeloma cells as a big huge heard of gazelles. For this analogy, the gazelles are bad, they are cancer, and we need to kill them.

Think of this heard of gazelles as myeloma cells. They are BAD!

The lion is the treatment being used, like bortezomib or melphalan. The lions are unleashed and they start picking off the gazelles in grand fashion. Lots and lots of gazelles. Even better, doctors unleash a heard of lions by combining drugs, so the lions might be named Bortezomib, Melphalan and Dexamethasone… Together, they are far more powerful than alone.

See these lions? For this analogy, lions are GOOD. They are the medications and treatments used to pick off the bad gazelles. We will name these three lions Bortezomib, Melphalan and Dexamethasone.

And when the lions are done, there are still gazelles left. They are hiding– quiet and undetected. And those gazelles are the smartest, fastest, and wiliest of the bunch. They are also typically the most aggressive, mutated and hardest to find of them all (remember, they survived the lions). Sooner or later, they will breed and be back. This time, we’ll need fresh combinations of lions– new lions who are smarter and faster than those gazelles.

After Bortezomib, Dexamethasone and Melphalan are done, some gazelles survive. And they are the smartest sneakiest, and evilest of the bunch. Sooner or later, they will reproduce and come back in full force, stronger and more resilient.

A new, better arsenal of drugs, therapies or combinations is needed.

Better yet, a cure!

Such is the nature of myeloma, and why myeloma patients who may not begin as “high risk” will eventually have high risk disease as time progresses.

So now what?

And this is why we must find new treatments, better protocols and a cure. The time is now; we cannot wait. The Myeloma Crowd Research Initiative is funding two promising clinical trials that may be cures. These trials are launching now. But in order for these trials to stay on track, we need your help.

What can you do?

• Consider supporting the Myeloma Crowd Research Initiative (MCRI) by starting a fundraising page. It is easy and takes just minutes. Click here to get started. Next, share your fundraising page with family and friends via email, Facebook, Twitter or any other social media you use. Ask them to donate to your page. Small amounts add up fast.
• Make a donation in any amount to the MCRI effort. Simply click here. Or you can mail a check to Myeloma Crowd/CrowdCare Foundation, 3315 Mayflower Ave, Suite 1, Lehi, UT 84043.

The Myeloma Crowd is a registered 501(c)3 non-profit. Tax ID 45-5354811. Your donation is fully tax deductible to the full extent of IRS guidelines.

I am a myeloma patient diagnosed in January 2012. I am 48 years old with two children ages 16 and ten who need me. I want to be here for them, to raise them, to be there for weddings and grandchildren. I have a new husband and a full life ahead of me. I cannot idly wait for someone else to do the work to cure me. I want to speed this process along. My life and the lives of other myeloma patients depend on it.

Please join me in getting involved in our own care. I promise you that it is empowering to know that we can be part of the solution. And, besides, I can’t wait for a cure. Can you?

Read the original article here.

Donate or Build Your Own Fundraising Page

The case for living life NOW

Sheri is the woman sitting to the right of me (I'm wearing the pink T and white skirt). This photo was taken three years ago when I had flown out to Long Beach to attend my best friend Julie's dad's funeral. It was a weekend filled with all kinds of emotions: mourning, sadness and love. My hair was still short-- just growing back from my own cancer battle (multiple myeloma) and the two stem cell transplants (and massive chemo that went along with it). One evening, we moms took our kids to Knott's Berry Farm and while they were on the rides, we hung out. Sheri died yesterday from ovarian cancer.


This is Sheri about six months ago when we thought she would beat her cancer.

Profanity alert: FUCK YOU CANCER. You are evil and hateful and some day, we will BEAT YOUR FUCKING ASS INTO SUBMISSION.

My best friend Julie's sister-in-law, Sheri, died yesterday from ovarian cancer. She was diagnosed 15 months ago and fought a very hard battle. She did chemo, had surgery, got sepsis, almost died on the operating table. And each time, she fought back. It was a miracle. Perhaps she'd beat it. And then she didn't.

Truth: "Life is normal, until it's not." My life, too, was "normal" and then it wasn't. And since that day where my life took that dramatic, scary, awful turn, I never looked back. I ran to safety (my parents' home) and fought cancer and fought to build a new and better life. And each day, I swear to you, I do my best to LIVE. I treat people the best way I can. I really put myself out there to help others, even when it's not comfortable or convenient. I cut out people who are toxic. And I run towards... love, fun, peace, and meaning.

I am flying to Long Beach next week to hang with people who are more than "friends." They, too, are my beloved family. I want to be with them and mourn with them. I cannot be here living life like it's normal when it isn't. Not right now.

One thing I've learned is that life does carry on. Even in the darkest depths of grief and sorrow, life continues. People go out to eat, laugh, go to work, watch TV, pick up the kids... Everywhere around me, life is moving forward. Nothing stops when our world stops or ends. And sooner or later, we crawl out of our dark place and join the living because what is the option?

And that's where I travel, write, be with friends, and nap. The glorious, luxurious nap. I've started building time in for a nap nearly every day. I love "my time" in the afternoon, channel surfing until I fall asleep with the soft noise in the background. I read, I learn, I try to improve myself. I walk outdoors, sometimes alone, sometimes with my husband or a friend. I laugh and shop. Today, I am waiting for my friend Madi who will be here in a few minutes and we are walking along the beautiful trail behind our homes that follows the Jordan River. We reconnect, we embrace life until the moment we can't. And when that happens, all we have are the memories we created and the relationships we've made. The impressions we've made with others, and how we've made the world or someone's life a little better.

And that is the meaning of (my) life.

My latest via Divorced Moms is here. And now, my advice to you: TODAY do something you LOVE and something that MATTERS to you in a BIG way.

Peace and Love,

Lizzy

Find Joy & Happiness NOW. Life is Too Precious & Short to Wait
BY LIZZY SMITH for Divorced Moms                   

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June 02, 2016

I say this all the time because it is true: "We carry on with our lives until one day, one second, everything changes." Just.Like.That. One second and life will never be the same again. It can come with warning (“I’m unhappy, I want a divorce, and I’m moving out.”) or without (“You have cancer.”). It can be an unexpected death, the discovery of an affair, a devastating diagnosis, making the decision to cheat on your husband, or getting in an accident.

Today, I got the very sad news that my friend Sheri died. She was just 50 years old. Some 15 months ago, Sheri was diagnosed with Stage IV ovarian cancer. She had surgery, radiation and chemo. For a time, we thought she would beat it. And then she took a turn for the worse about a month ago. This time, hope was fading until there was none left.

Life for me, too, was chugging along at an expected pace. I was working, married with kids, and had all the entrapments consistent with that life—a mortgage, a long commute, 15 days of vacation... And then, “You have cancer.” Just like that, nothing was ever the same again.

So today, while I mourn the passing of my friend, and while I know I’ll be shedding loads of tears, I turn to the biggest advice I can give anyone: LIVE. Life is so short and precious. If you are in a bad marriage, leave it. If your boyfriend is an asshole, ditch him. If you have friendships that aren’t healthy, end them. If you hate your job, your city, your house, or your life, start changing it. It can be incredibly hard and overwhelming. Where to begin? Baby steps, one day at a time. Try this:

1. Write out what changes you want to make in your life
2. Prioritize which changes are most important to you. Pick the ones that will make the biggest impact (i.e. divorce, sell the house, stop eating sugar). In fact, you might just want to pick one.
3. Make sure the changes you write out are specific (sell the house) and actionable. Goals that are too broad usually never happen. For example, if your goal is to “get healthier,” be more specific. Fill in this blank, “I want to get healthier by_______________.” It could be eating five servings or fresh organic fruits and veggies each day, eating out at restaurants less than once per week, exercising a minimum of 30-minutes per day six days per week, and getting at least eight hours of sleep per night. Now that is something you can write out on a checklist, post on your bathroom mirror, and do! (If you’re committed enough.)
4. Make out a detailed list on how to accomplish your goals and start (literally) checking them off.

Since this is for divorced women (or those considering a divorce), I’ll pick “Ditch My Guy” as an example. This could be your husband or boyfriend. Here are some things that should make your list:

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This myeloma warrior starts on new wonder-drug Daratumumab (Darzalex). Crossing fingers & saying prayers

Last summer, I heard of Daratumumab (Darzalex), a potential ground-breaking new wonder drug in treating myeloma. What is Daratumuab?

This is a human CD38-directed monoclonal antibody indicated for the treatment of patients with myeloma who have received at least three prior lines of therapy, including a proteasome inhibitor ( like bortezemib), an immunomodulatory agent (like lenalidomide) or who are double refractory these agents. (www.darzalex.com)

That was me. So when I was told “no”, it wasn’t approved yet, I begged and demanded. To no avail. And with my myeloma numbers growing, we could wait no longer and I had that dang transplant, but first, I started it off in the grandest way I could think of: I went skydiving.



And the next day, I checked myself into the hospital for a really tough process during November and December. And I shaved my hair and lost my eyelashes and eyebrows (not to mention I threw up every day for weeks and weeks, ate no food at all for five days, and lost way to much weight). It pretty much sucked.



Flash forward to today. I am doing well. I went to Nicaragua and Costa Rica for Spring Break. I took a couple trips to Florida and Las Vegas. I’m running/walking again. I bought a bike yesterday. My daughters are out of the school and we’re going to have some amazing times together.



And then…it was time to confront myeloma again. Last week, I had my three-month check-up with Dr. A. We ran the Minimal Residual Disease test and it was positive– 10 myeloma cells per million (just 10! While I wish it were 0, this is still a terrific response, says my doctor). Still in remission, but with those detectable numbers, he was able to convince my insurance company to get me on Daratumumab, which he says is not typically used as a maintenance therapy. Well color me happy, I want it! Anything to give my body the arsenal it needs to FIGHT.



Yesterday, I left the house at 7am for the 45-minute drive up to Huntsman Cancer Institute (plus 15 minutes for a coffee-run) for a 12+ hour day.



The first infusion is a very long one. I had to check myself into a hospital room so I could be monitored closely for any reactions. We accessed my port, drew some labs, and briefly met up with my PA and Dr A. Nearly two hours later, the Daratumumab began. Finally! Fighting cancer is so time consuming!

Was it eventless? No. About 30-minutes into the infusion, I felt a very slight tightening in my throat. We had to suspend the infusion until that went away. The nurse gave me an Ativan because I felt anxious, and more Benadryl via IV. That made me sleep, though not for long! I woke up completely congested. I had never felt anything that intense in my sinuses– total blockage. I felt like my cheeks were going to explode. I also lost my voice, barely able to whisper. They rushed me in some nasal spray. I used up almost half the bottle within maybe 10 minutes. Finally, relief. I fell back asleep for a few hours.

That was the end of the drama. They sped up the rate of infusion and I ate lunch. Then dinner. I watched TV. I wrote a few articles. I did a little shopping on-line. And then I was ready to start climbing the walls. When was the day ever going to end? Turns out, 8pm, almost on the dot. I popped five steroid pills (as part of my regiment, I take five after infusion, and five more the following day). And then my mom and I drove home. A long, grueling, boring day. But worth it!
This regiment will include weekly infusions for three months. After that, it’s bi-weekly infusions, followed by monthly infusions. I am praying hard that this is effective and keeps me in remission for a long time. At least long enough so that Car T Cell Therapy trials are easier to get into. Because that is really what I ultimately want.

So now what?

How can we patients and our supporters make this happen? By contributing to the Myeloma Crowd Research Initiative, which is funding two of those clinical trials. I started a fundraising page (and you can, too, by simply clicking here to get started) and have over $2,500 raised. And I’m not done yet, I’m still working on adding to that amount. Look, I’m not a rich person. I have loads of medical bills and co-pays. I’m on disability through Social Security and my employer’s long term disability insurance plan. But by asking our friends, co-workers, family or whoever to contribute via an email or Facebook post is easy.

One evening, I held a dinner party at my house and invited fellow myeloma warriors that I know and neighbors over. They contributed some money for the dinner (I donated food so all funds went straight to MCRI) and everyone got cool door prizes that I gathered up from local businesses (I just asked the restaurants and carwashes that I frequent for a donation and almost no one turned me down). Last summer, my daughters held a lemonade stand sale. So get creative. Every dollar helps us find what we all want and need: a cure! (Or at least better treatments.)

Daratumumab (Darzalex) Clinical Trials

To find a clinical trial using Daratumumab (Darzalex), click SparkCures link here:
SparkCures Clinical Trial Finder: Daratumumab (Darzalex)