I did it! Rockin' the short 'do

Why does hair matter so much? It does, though. And the biggest struggle (besides fighting for my life and confronting my mortality head-on) has been hair loss. The first time I lost my hair, I ALWAYS wore a wig. This time around, I pitched the wig far earlier in my hair re-growth. But every time I look in the mirror, I see a woman who is/was SICK. That short hair represented cancer and chemo and treatment. Illness. Close to death's door. Today, I bleached my hair. If I'm going to have short hair, I'm going to OWN IT and ROCK IT.

 

 

I have to admit, there are times that I look in the mirror and I am terrified by what I see. It is a reminder that life is not normal, that I am not the same, that I am broken. And I HATE IT. What cancer does is it robs you of your sanity. Every time I sneeze or get a bruise or my shoulders hurt, I think "Does this mean something BIG and BAD?"

...And then I talk myself off a cliff. Breathe. I am alive. I will WIN. I will OVERCOME. And I will LIVE every day as if this is all I have. Because maybe today is my last. And, really, perhaps it's your last, my dear reader. None of us ever know. Because life is normal, until it's not. And when that day comes is anyone's guess.

So today, rock on, warrior.

I went for the whole enchilada (almost)

I'm going to use this whole "but I endured a stem cell transplant and spent 25 DAYS in the hospital" excuse for all its worth. The latest... Yesterday, I went for a major pick-me-up. I accompanied my mother to a medical facial spa for a consult. She spent no money but I sure did! Her appointment lasted just minutes so I butted in...

"What can you do for me? I just finished up major chemo and I feel awful. My whole face is falling!" I lamented.

Two ladies studied my face. They had to say the whole "You look great [for your age]"-thing but then they started throwing out all kinds of options.

"Surgery around the eyes to tighten them up," said one.

"No surgery," said I. " I doubt I would even get permission from my oncologist."

"Fillers in the cheekbones would get rid of the hollow look," said the other.

Hollow look? Ugh. Thanks, Dexamethasone (steroid) for taking the fat from around my face away. Some people get Fat Face from Dex. I lost my muscle and padding instead (why Dex couldn't have this same affect with my tummy I'll never know).

"What else? Keep going," I said.

"Botox around the eyes," said one.

"Lip filler," said the other.

They mentioned that the Botox I had the month prior in my forehead was awesome. But what about the rest?

Right... What about the rest?

Cost? I can't even go there. But, hey, I endured. I deserved this. Right?

So I ordered up the whole enchilada. Cheek fillers (should last 18-24 months), Botox around the eyes, and fat lips. The injections HURT. Hey, this is no day at the spa getting a massage and pedi, that's for sure. Lots of topical numbing solutions and pricks and holding onto a pillow placed in my lap for dear life.

And when I was done? Well, today I have major frozen face and you know what? I love the feeling! I hate it when my face feels like it's falling and, since I'm getting used to the feeling of not being able to move my facial muscles, I don't like it when it goes away.

I really didn't think my children or William would notice so I decided to stay silent. I picked up Siena from school and she looked at my funny but said nothing. Oh, there's Morgan. "How was your day?" I asked her, kissing her on the forehead.

"Oh, my gosh! You got your lips done!" she said.

"What? No I didn't," I said.

"Yes you did and... what else did you do to your face?" she asked.

Busted.

William stopped by my parents' house to pick us up for dinner. As we pulled into the restaurant he said, "Don't think for a minute I don't know where you've been," he said.

"Careful what you say. Don't accuse," I responded.

"You look beautiful the way you were," he said.

Right answer! "But I didn't believe you," I said.

He gave me a huge hug, told me he loved me, and I was perfect. Gosh I love that man.

My eyelashes are finally growing back from the awful chemo when I lost them all. I don't think they're quite long enough yet for eyelash extensions. I haven't decided if I'll do them when they are long enough but I might.

Life is too short. Call me vain but whatever! After 25 days in the hospital, fighting myeloma, and surviving my third stem cell transplant, I deserve it.

Lizzy's Myeloma Journey: Treatment, Recovery, Play. Repeat

I had a rather tough auto stem cell transplant (SCT) this past December 2015. It was my third since diagnosis (the first two were tandem SCTs in 2012). You can read about my third SCT journey in these articles published on the Myeloma Crowd (www.myelomacrowd.org):

• Myeloma Survivor Lizzy Smith Enters Stem Cell Transplant #3 With A Skydive
• SCT Postcard From the Edge: Surviving My 5-Day Hospital Stay For Myeloma
• Hospital Food, Cancer & Healing. Attempting the Impossible
• A Personal Story of Surviving My Third Stem Cell Transplant

It was a really hard November and December. I got married and literally, the very next day, found myself in the ER. The "sickness" journey began. I was not happy.

Fast forward to yesterday. It was my post SCT follow-up appointment with Dr. A (day +60). I was dreading it. I did not want to go to the doctor and hear how the transplant and my re-staging tests went. I wanted to continue my life of near-normalcy, to forget I had cancer. But there I was, feeling all kinds of sick and nervous. Dr. A and my PA, Mary, walked in. Just by the looks on their faces, I wanted to throw up. They looked sad. But... the news was....

Fantastic! Stringent Complete Remission. A better-than-expected response. We learned that I am still very receptive to existing treatments. Time to celebrate! My mom was crying, my dad had tears in his eyes. And then I felt... fear. I remembered feeling this way after my first tandems were over. What do you mean I wasn't going to be in clinic nearly every day being monitored? There was something empowering about being in treatment. And now... just maintenance? Getting markers done every three months? That wasn't enough! It took months to settle into "life" without all those appointments and meds but when I did, I started really LIVING. I did not know what "life" without daily cancer treatments would look like for me but discovering it rocked. I finished up my divorce, started dating again, began writing my story on this blog, got my own Divorced Moms column, met Jenny and helped her launch the Myeloma Crowd web site (www.myelomacrowd.org) to help us fund clinical trials that will help cure our shared disease, and started traveling like Crazy Woman. I hiked, went skiing, visited museums-- and dragged my daughters along with me. We started having a lot of fun! I got remarried...

And then I relapsed.

When I had to start treatment again, I was angry. I resented my doctor (surely this was his fault!). I hated the fact that I was bald again and without eyelashes. I skipped my birthday, Thanksgiving and Christmas because I was in the hospital throwing up almost every single day for two months. I was cranky. One day I called up Dr. A's office and said that I was "this close" to not showing up for Melphalan and transplant. I did d-Pace and that was enough. I was over it. Dr. A talked me off that cliff and I ended up completing the very awful regiment.

And then Jen, my nurse, offered up a really important pep talk: "We take control of your life when you're doing a stem cell transplant. But remember that it does end, you get better, and then you get to start living again. It will happen, it's just a few months."

She was right. It did end. I did start feeling better. And now I'm in remission! Fear? Yes. But the world is, once again, my oyster. Now what? (Besides weekly Velcade injections and dex as part of a maintenance routine.)

This morning I was in the shower and broke out into a huge smile. I got butterflies. Life was MINE! Traveling Lizzy was back. In a few hours, Hubby and I are flying to Florida for a much-needed vacay. Last night, my best friend, Julie, talked me into buying plane tickets and meeting up with her in Las Vegas in a few weeks. Why not? We are both taking our oldest daughters and while they're at a Justin Bieber concert, we're hitting up a spa, then finding a great bar and knocking back a few drinks. In early April, I am gathering up William and the girls and we are going to Costa Rica for a week. Zika virus? Small risk but, I suppose, I'd rather get sick from Zika because I went on a great vacation than staying home waiting for cancer to hit again. I'm planning summer trips to Mt. Rushmore and New Orleans. While in Louisiana, we'll check out some great voodoo shops and cemeteries and gorge on Cajun food.

Yes, life is looking normal. Make that better than normal.

I'm eating again, refound my "taste" for coffee (during chemo, I couldn't fathom drinking it-- the smell alone made me gag), and I've gained some of my weight back. I am cooking and baking and cleaning.


I am finally exercising again. For the first time in four months, I went to the Rec Center and went for a walk/run and did some major stretching afterwards. I am really sore! But, truly, it felt fantastic. When we get back from Florida, as part of Muscles for Myeloma (join us!), I am working out every day (except weekends). I think I will also start back up with Bikram yoga. It is time.

After all, myeloma is a journey, not (yet) a destination. Right now, it's time to start living again--living Big and Grand. I intend to enjoy every minute of it. It beats the alternative.

Got anxiety? Here are ways to FIGHT It & PREVAIL!

I just got back from my oncology visit. This was a HUGELY important appointment because it was my "official" follow-up post stem cell transplant. Last week, I did a 24-hour collection test, a bone marrow biopsy, and labs. The results were back. Did the highly intensive therapy work? Was it worth all the pain I endured, 25 days in a hospital, and losing my hair again? You want to talk ANXIETY? Today was it! I was nervous and full of DREAD. I did NOT want to even think about myeloma, stem cell transplant, or what might be in store for me now.

Dr. A and my PA, Mary, entered my exam room. My parents were with me. They are my "good luck" charms. They've been with me every single step of this Myeloma Journey and I needed them on this day, too. They were, thank God!

...And then I got the news. Stringent Complete Remission. A REMARKABLE and unexpectedly fabulous response. I was so relieved. My mom was crying. My dad was tearing up. Happy dance! I still say this with TREMENDOUS caution because myeloma is one sneaky disease. I have great respect of how terribly smart and wiley those cancer cells are. But for now, I celebrate. I take this journey one step at a time, one day at a time.

What's in my future? Weekly Velcade injections, weekly evil Dexamethasone, and acyclovir so I don't get shingles. Every three months we'll do myeloma markers and monitor me very closely. And pray. Lots of praying, eating well, exercising, having FUN, and controlling anxiety. And guess what? My hair is growing back (in a few more weeks, I'll have Barack Obama hair!). My eyelashes are back (they're still short but I have some!!!), my eyebrows have stopped thinning out (I thought for sure I'd lose them all but I didn't, yay!), and I went for a walk/run yesterday and it didn't feel horrible! The healing process is actually amazing, beautiful and filled with hope. Please, Lord, let this continue for a very long time. Let me be strong and resilient. Help me WIN and thrive and be grateful Every Single Day.

And here is my Divorced Moms column. How do I manage tremendous anxiety that life on Myeloma Road brings me (and, trust me, divorce and cancer have made me an expert on this topic)? Read here...

Breathe & Be Calm. 10 Ways To Combat Anxiety
by Lizzy Smith                    

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February 25, 2016

Before my cancer diagnosis in January 2012, I had experienced just two anxiety attacks in my entire 44 years of life. One was sitting in horrific traffic in Yekaterinburg, Russia on my way to see a judge about adopting my daughter. The other was right before moving out of my condo to get married. Both attacks were truly frightening-- I would double over, unable to breathe, my heart pounding, palms sweating, wanting to die. But in general, I was able to handle tremendous amounts of stress really well, juggling all kinds of tasks without really dropping anything. I was pretty amazing, I thought. 

 

And then life threw me quite the curveball: multiple myeloma. And then life threw me a few more curveballs, one after the next. Calling the police to have my then-husband, who was drunk and screaming at me, removed from our home. Filing for a legal separation. Quitting my job. Moving two states away with my children and our cat and into my parents' basement. Major chemo and treatment. And a horrific divorce during which my husband called me every awful name he could find in the dictionary. Bam! Bam! Bam! Anxiety was my new "favorite" emotion. I had terrible insomnia. I was afraid to sleep without the TV on. I dreaded text messages (it was usually another awful accusation from my ex). I would stand in line at Costco and break out into a sweat for no reason, heart pounding.

Time has made coping with bouts of anxiety a bit easier simply because I recognize them for what they are. And most of the time, simple techniques help calm me tremendously. Here are my go-to stress busters:

1. Exercising: During exercise endorphins are released, which is a natural mood enhancer. I enjoy walking, hiking, skiing and yoga most but just about anything that increases my heart rate helps. (Honestly, few things make me happier than Bikram yoga. During a session, I learn to breathe and get time to meditate. It is a slice of peace and heaven. So calming.)
2. Eating Right: There is something incredibly empowering by treating my body right. I may not be able to control cancer or relationships, but I can control what I put in my mouth. I try cutting down on anything processed and gorge on fresh fruits and veggies, wild fish, and whole grains. I have discovered new ingredients that I didn't even know existed. Cooking is also incredibly calming to me. The smells and tastes are great distractions and my body simply feels better when I give it nutritionally dense, delicious food. And when my body feels better, so does my brain.
3. Drinking a lot (and I'm not talking alcohol!): I feel horrible when I'm dehydrated. Water with fresh lemon is my favorite beverage. So is coffee, though too much caffeine is a huge no-no for treating anxiety. Still, the smell of coffee brings me huge joy so this is something that I rarely deprive myself of.

Keep reading...

Myeloma took my coffee away!

It's been so long since I've last blogged that I (almost) forgot how. Truth is, I've had a tough stem cell transplant recovery (thanks, myeloma! I HATE you.). As a result of feeling sick and tired, the thought of logging on to a computer and writing was just too much. That said, I'm doing much better now. Not fully recovered but getting close. It's been a month and, really, it is remarkable that I've come this far.

A few things that I've noticed from this horrible experience (which is different from my tandem sct's in 2012):

1. I struggle with eating. I'm nauseous when I don't eat, which makes me not want to eat. I have to remind myself that I (mostly) feel much better if there is something in my stomach. Except that nothing really sounds all that appetizing. Pickles are mostly good (not always, though). Ramen noodles were good for awhile until the last time I ate them and then threw up.  Shrimp is generally good, except I threw that up, too, one day. And saddest of all, I don't like coffee! I'm devastated because that was the one huge thing I looked forward to doing every morning-- stopping at a coffee shop and getting coffee. I still occasionally drink it but generally, it doesn't taste good. I hope my love for it comes back.

2. I'm officially too thin. I don't even want to weigh myself. Strange feeling looking at myself in the mirror and thinking, "eat a pizza." We went to Ruth's Chris last night for my dad's birthday (I have THE BEST dad on the planet, by the way) and, honestly, everything tasted delicious and I am happy about that (though I can't eat there every day). I threw up about an hour before we headed out so my tummy actually felt normal by the time we left. I popped a Zofran and I ate a lot-- bread, ahi tuna appetizer, mashed potatoes, a huge salad, and a steak. I also got chocolate cake and bread pudding for dessert. Signs of better eating days? I hope so. I love food. I want to enjoy eating again.

3. I have finally allowed myself to just rest. I resisted this for so long-- always running around, staying busy, and never allowing a dull moment to enter my life. This time around, I gave up doing almost everything. I got a house cleaner, I allowed my amazingly supportive husband to take over kid duties, my mom rubbed my feet almost every day for weeks, I rarely cooked, and I took long naps. I needed it and it was ok to just let things go. No one fell apart, life went on.

4. I have some psychological trauma from my long hospital stays. I soon realized that I did not want to be alone. If my husband was gone for any reason, I'd go to my parents' house until he got home. What's up with that? I'm mostly over it, but not entirely.

5. I seriously need a vacation. And that's what I'm spending my time on now: planning two trips, one for Bill and me, one for Spring break for the kids to come, too. Somewhere warm. Somewhere that I will relax and do very little, which takes such places as Europe or South America off the table, because if I go to those places, I'll be touring instead of parking my butt on the nearest beach chair and sleeping in the warm sun.

6. I regret having this stem cell transplant. I will never do another again.

And there you have it. I'm doing well. I'm at Costco many days, I meet up for lunch with friends, and I'm healing-- mentally and physically. I'm back at church and Bible study, two places that I love and where I feel welcomed, loved, safe, and spiritually fed. I am enjoying peaceful time with my family. And I am trying to stop this nauseousness that I still struggle with every day. That part is horrible and one of the reasons why I regret agreeing to another transplant (I should have been at U Penn in their Car T Cell Therapy clinical trial, or at NIH's) and why I'll never do another. I still have awful acid reflux that hurts. But each day there is progress.

I took my daughters snowboarding and skiing twice this past weekend. I purchased season passes to Park City/The Canyons for them. Because I am not yet physically strong enough to ski, they spent the first day in all day ski school, and the second day, I sent them off together, without an adult, for the first time. I was thrilled that they had an amazing tine together. But my goal is that in two weeks, I will join them on the slopes. Mommy-daughter time in the fresh mountain air and amazing snow that we've been blessed with this season. I want it, I crave it. Wish me luck!

XO,

Lizzy

Back (sort-of) from Stem Cell Transplant Hell (so help me, God, I will NEVER do this again)

I have completed my stem cell transplant and engrafted. My engraftment has been awful, although feel as if I'm sort of climbing out of the abyss.

I received high dose melphalin on a Tuesday. I should not have felt its effects for several days but I felt it the day-of. I knew then that this was going to be a bad experience. My poor body is just done with this intense treatment and is fighting it every step of the way. "LEAVE ME ALONE," it is screaming. And I (and my doctors) are not heeding that warning. On the day of my treatment, I chomped on ice for an hour and then went home, tired and feeling very "wrong" and twitchy. I went to bed early after taking two Ambien and an Ativan (yikes) to calm me down.

William (my angel and husband) took my kids to school the next day while I headed back to clinic for my stem cell appointment and had all my luggage and Christmas gifts in my car. My mom and dad (my other two angels) joined me. I got my stem cells (anti-climatic) and we drove to our hotel and checked in. I decorated for Christmas and went to bed.

On Friday, the girls were done with school and they joined us in Salt Lake. Already, I was feeling awful-- fatigued and developing chest pains. It's like I had acid reflux but could not get any of it out. I knew mucositis was setting in-- a painful inflammation and ulceration of the mucous membranes lining the digestive tract.

By Monday night, I was in terrible pain. I was barely able to swallow, my mouth was coated in mucus, and I felt like someone was stabbing me in the chest. I could not swallow my pills. Off to clinic I went and soon enough, I was readmitted into the hospital. I wanted to SCREAM. Myeloma took away my birthday, Thanksgiving, and now Christmas? But I needed help. I was severely dehydrated and thirsty. I could sip water and fruit punch but that was it. The pain in my chest made me cry. I was given my medications via IV. I was hooked to a morphine pump (which took 7 attempts and huge bruising to get that IV into a vein in my arm), and I was given IV fluids. For five days, I ate not one morsel of food. My weight plummeted. My doctors begged me to eat. How the hell was I supposed to eat when I couldn't even swallow?

Finally on Christmas day, I begged (and won) my exit from the hospital. I went home throwing up in a bag and crawled into bed and fell asleep. Merry Christmas! The only good news is that my daughters had a wonderful day-- thanks to my sister-in-law who had them spend the night. They baked cookies, watched movies, ate popcorn and Santa came to their house. The next morning they opened all their gifts. I spent too much, as usual, but after asking both girls their number one favorite gift, they both said the same thing: Their flight/trip to San Diego to visit their sister, Kalie, and Nicole. They leave in two weeks. I am so grateful that they are maintaining close relationships with their step sisters even if their dad has pulled a disappearing act (don't even get me started on this one).

So here I am today, one week post engraftment and, while doing a bit better each day, it's been tough. I am weak. I tire easily. I've struggle with terrible diarrhea (finally gone!). I throw up at least once per day. I eat, but maybe 500-700 calories max per day. I am too thin. I can't even stomach getting on a scale to see what I weigh now. My scalp itches like hell because my hair is growing back. I can't tell if I am losing my eyelashes but if I'm not, they are so short and mini. Thank goodness I have Morgan, my 15 year old daughter, here to work her makeup magic.

....So, it's time to start putting "me" back together.

Last night I started off with a 90 minute pedicure. My feet feel great at least. Next week, if I have enough eyelashes, I'm getting eyelashes extensions. If they've all fallen out by then, this will obviously need to wait. I am getting a Roman soak bath and back facial. Also a one hour massage and one hour facial. I'm getting microdermabrasion, too. I am spending four days at the spa and you know what? I deserve it. My skin is dry and miserable. I am miserable. So one step at a time, putting "me" back together.

And I'll give myself a few more days of just slowly getting up and doing something different-- go out to lunch, go for a drive... whatever, anything. And then I'll start on our exercise bike-- 15 minutes if that's all I can do. I am so weak, did I say that already? I need to start slowly building up strength and stamina. Since it's cold and we have snow on the ground, I am grateful that we have a home gym, with a bike, elyptical machine, treadmill, free weights and a sauna. This will give me all the tools I need to get back to my normal snarky, high energy (most of the time) self.

Someone asked me recently why I did another transplant instead of the new medications and therapies. DON'T EVEN GET ME STARTED. I begged for elotuzumab. I begged for clinical trials. Nothing came to fruition and then I was told things were critical and I needed to act NOW. Was this worth it? No. This has been the worse experience of my entire life. I should have been at U Penn doing their Car T Cell therapy trial but since I was in transplant, I'm not eligible. I should have been on elotuzumab, which would have given me time. I should not be struggling to recover from a horrible transplant. I should not have lost all my hair and be back in a wig again. But it's done and I must move forward. I just need to get strong and well, and that's what I'll focus on. And be grateful that I am alive.

Cheers,

Lizzy

I'm in the midst of stem cell transplant, lord help me

Last Tuesday, I received high dose melphalin. It is a high dose chemo used to treat multiple myeloma. It goes in through my port, all that heavy-duty poison going into my veins, killing all those myeloma cells and everything else. The injection takes place over about an hour, with the melphalin lasting only about 30 minutes. And my job is to pack my mouth with ice for that entire time, non stop, so I don't develop all kinds of awful mouth sores. Afterwards, I drove myself home and got some lunch. After all, I should not feel the effects of this horrible chemo for a week or so.

Wrong they were! That night, I felt queasy and twitchy. Like my muscles all over were twitching. I felt "not right" at all. I scrambled and packed my bags. My intent was to go to clinic the next day, get my stem cells injected, go home and spend the evening with my family, and then drive myself to my clean apartment in Salt Lake City that night alone. Think again, I knew I would feel to awful for that to happen.

The next morning, I picked up my mom and we went to clinic. It was stem cell transplant day. Very anti climatic. They gave me pre-meds, which knocked me out, and then over the course of an hour, I got 7 million of my own stem cells back into my body. This is it folks, I have no more stem cells on ice. This is my last stem cell transplant and this one has been so awful, I'm not sure I can handle another one again anyway. After this, onto new lines of therapy, which are so much more promising if you ask me-- immunotherapy, Car T Cell therapy, all the new drugs....

After I was released from stem cells, my mom and I drove to the Residence Inn, checked in and unpacked. I went to Bucca di Beppo, which is across the street and ordered pasta and pizza. With my appetite changing it's all that sounded good. My dad came. I took a nap. What the heck, I am NOT SUPPOSED TO BE FEELING THIS AWFUL SO FAST!!!!

Here were are a few days later. My husband dropped off all our Christmas gifts and I decorated. He also dropped off my daughters, who are our of school for the holiday break. I am not alone. I am surrounded by my amazing, supportive, loving family. I wish I felt better. Yesterday, they went to the symphony, then went out to lunch. I slept on the couch and then watched the University of Utah-BYU football game (it was an ugly win but at least my Utes won). I felt nausea all the time. I layer up my an nausea meds, which make me tired. I feel worse when I'm walking. I feel hot, clammy and prickly. I know I will pass out if I stand too long. I never know if I feel better with food in my stomach or nothing. I am experimenting. I mostly crave pasta, noodles, sourdough bread with butter. Perrier. Water. I am low on potassium. Instead of taking those awful horse pills, I am attempting to eat my way out of the hole-- bananas, avocado, tomatoes, pasta sauce, potatoes...

They tell me that my worse days are ahead of me. Those are coming tomorrow (Mon), Tues and Weds, and then I should start turning a corner and feeling better, engrafting. And I should be able to go home on Dec 26.

My treatment schedule has robbed me of my birthday (I was in the hospital), Thanksgiving (I was in the hospital), Christmas Eve and Christmas Day (we will be in this clean apartment). I hope and pray that I will be feeling well enough to revel in the excitement of gift opening. I purchased everything early, with great thought behind each gift.

Beyond that, I hope that this stem cell transplant process keeps me out of the hospital and that I survive it relatively intact. The next few days will say it all.

Wish me luck! And if you're the praying kind, please keep me in your prayers.

Hugs,

Lizzy

Is this it? Am I getting ready to flatline? My scary myeloma experience

I am heading into stem cell transplant next week to treat multiple myeloma. On Tuesday, I got for my high-dose melphalin where I will need to chomp on ice non-stop for about 20 minutes. The following day, I will be moving into a two-bedroom Marriott Residence Inn for some two weeks and also getting 20 million of my own stem cells injected back into my body. Fun times! I rented the apartment so that my family and I can spend Christmas Eve and Christmas together. I purchased a tiny Christmas tree and I am taking up all the gifts and decorating. This is not an ideal situation but at least we will all be together.

So leading up to transplant, last week I was scheduled to get platelets (I am always low on platelets since starting wicked D-PACE chemo in the hospital in early November), Zometa to strengthen my bones, and IVIG that strengthens my immune system. IVIG takes forever, followed by the two other treatments, all via IV, that when I showed up for my treatment, we decided to give me two of these meds at the same time -- IVIG and Zometa. I have a double port, which means that I can receive two meds going into two different veins simultaneously.

So we started the meds and all was fine. I was writing my Divorced Moms column and then, all of a sudden, I wasn't feeling that great. I pushed the feeling aside, attempted some deep yoga breathing and tried to center myself. That went nowhere and I immediately started feeling worse. Racing heart, sweating, feeling sick... I pushed the button to call for my nurse.

"I don't feel well," I said. "I'm going to throw up." She gave me a pan and I threw up. And I felt worse. I can't even describe it but it was out-of-body scary. I closed my eyes.

Before I knew it, I could hear the nurse calling for backup. I opened my eyes and the room was filled with people. My blood pressure was dropping and my heart wasn't consistent. I felt horrid. And then I heard the voice of my husband. William had arrived and he put is hand on my shoulder. "I'm here," he said. I nodded and started crying. I was sure I was going to flatline. So this is how it ends, I thought in the nether regions of my brain. But my husband was there.

They wheeled me down to the ER. They gave me fluids and meds and I don't know what else. I still didn't feel ok. I shook and nodded my head and sort of heard people speaking but could process nothing. My life is ending slowly... ebbing. My heart will stop and my spirit will exit my body and, just like I've heard others describe their near death experiences, I will look at all those people looking onto my lifeless body...

And then, just like that, I was feeling ok. I opened my eyes. And ten minutes later, I said I wanted to sit up and I was hungry. And I ordered room service and ate shrimp salad and soup and carrot cake.

It was so horrid and weird and awful. They said that I had a reaction to the injection, not the meds. We gave me the platelets, I finished up the Zometa, and I declined the rest of the IVIG. I was afraid of it.

And there you have it.

Yesterday I had a bone marrow biopsy. Instead of being a brave warrior and having it done without any meds, I insisted on sedatives. I was given IV fentenol. I was floating. I felt nothing. A little pressure but that was it. But I paid for it, yes I did-- I spent the rest of the day feeling tired and hung over. I threw up five times. I slept. I felt "not ok." And then I did. We went and got pizza and watched a movie and my day improved.

The joys of a myeloma journey. And they are about to get a lot bigger and grander next week. I need to remind myself that as awful as I feel, after a few weeks I recover, I feel better, I begin living again. And I reward myself handsomely. This will be no exception. We will go somewhere beyond fabulous for Spring Break of summer vacation, at least that that is my plan. Somewhere like Rio or the Seychelle Islands or Fiji... Thinking about it and making out our short list keeps me going, keeps me hopeful and looking forward beyond icky transplant.

Peace and joy,

Lizzy

...And I'm back in the hospital. Thanks myeloma!

Friday was the most relaxing day I had had in a very long time. William took the girls to school in the morning and was gone the rest of the day. I really took it easy. I made breakfast, took a short nap, took a bath, took another nap awakened when my parents came over. I went for a short drive with them, we stopped at a local restaurant and I got some soup and then I had them take me home. I crawled into bed and slept for three hours. Then I realized that no one would be home for another hour so I slept another hour. I got up, did some laundry, my parents brought my children home from school and as we all sat in the living room, I thought... uh oh. I think I have a fever. We pulled out the thermometer and, dear heavens, it was 102. I did not feel like I had a temperature of 102. I felt quite rested, warm and peaceful. But "not feeling feverish" doesn't count-- numbers do. I called my doctor's office and I was told to get my ass to the hospital now.

Panic. My nose started bleeding. Oh my gosh what if I bleed out? I couldn't even find my big UGG boots so ended up with my second choice-- UGG slippers. I walked out into my living room. "I'm so sorry, girls, but Mom has a fever and I need to go to the hospital."

They were rock stars. Morgan is happy to kidsit her sister so she can earn money. "I'll fix us dinner," she said when I suggested she order them a pizza for dinner. "Please go get well. Hurry!" she said. We all gave each other hugs and my parents and I left, in rush hour, heading to Salt Lake City. Horrific traffic.

My next phone call was to William. "So we are on our way to the hospital," I told him. He was already in Salt Lake City. "Ok, I'll meet you there." And he did. He was in the lobby when we arrived. When I told the staff on the 4th floor who I was they immediately whisked me away to my quarantined room. My Physicians Assistant, Amanda (who I love), arrived minutes later.

"Amanda, I don't even feel feverish," I said.

"I know but you are admitted. I promise not to keep you hear longer than is totally necessary," she said.

And in my gut, as much as I HATED my last hospital stay, I knew that this is exactly where I needed to be. I had been struggling with a horrible cough for WEEKS. And with no immune system at all, I couldn't get better. The chemo kept that cough happily moving along. I knew that here, I could maybe start getting well. I was relieved, actually, to be in the hospital where I could sleep and have no responsibilities at all. I mean, this time, I didn't even bring a toothbrush.

So they took all kinds of tests and samples and cultures, started me on high dose antibiotics and platelets and I slept. Well, at least I slept through countless wake ups for vitals. I've now been here for four days and, unless I spike a fever tonight, I go home tomorrow. This is the same amount of time I was here two weeks ago. This time, I am not going home with horrible PTSD. I needed to be here. I have had massive amounts of antibiotics, three rounds of platelets, and two bags of blood. My cough is still here. It seems to be abating although I still have zero white cells. I am scheduled to start getting back my immunity in the next five days or so. So I will be extremely cautious when I get home-- I will stay away from crowds, I will mostly stay home, I will be very careful with what I eat, I will wash my hands often and pray like crazy. I will also need to come to Huntsman every day for labs. It is what it is.

A couple take-aways:

1. The food here has been horrific. So bad that, in fact, I threw up dinner last night. I can't order off the menu anymore. Everything has been cold and overly salted. I don't eat that much sodium during every meal. Usually I like the food here. I don't anymore. I don't know what happened but it was not good in the kitchen. I've whittled down my diet to yogurt and crackers that they keep up on the floor,

2. I received communion on Sunday that was lovely. The chaplain, a woman maybe 10 years my junior, conducted it. I felt so at peace and full of love. My faith in God is strong and my love of Jesus profound. I didn't ask for it, they offered it out of the blue. It was truly heaven-sent.

3. My mom stayed with me last night. I told her it was totally unnecessary but, it turns out, it was. It was so nice just hangin' with my mom, chatting, watching movies, and napping. She is the best mom ever.

4. My dad is my hero. Despite being in a lot of back pain, he has driven my mom to visit me, went to Ann Taylor today to pick up an outfit I liked online and wanted to wear out of the hospital, and has shuttled my children all over Utah County since I've been in the hospital. There is no greater dad on the planet.

5. My husband is the love of my life. I will cry as I type this but he is a "guy's guy" but, at the same time, incredibly nurturing. More nurturing than I am. He has taken care of the kids while I've been gone, visited me while they are in school, purchased the most expensive thermometer on the market because he never wants me not to have accurate readings again, rubbed my feet, and surprised me with all kinds of food today so I won't have to eat off the menu. He is kind, thoughtful, and loving. It isn't fun to be a care-giver. We are newlyweds. Yet he is absolutely amazing.

... So while all this cancer stuff really sucks, it also has reminded me how blessed I am to have such amazingly kind people around me. Like my friend Katherine who is picking up my daughter every day from school this week. Or my friend Irene who brought over homemade Mexican flan. Or the countless messages I've received from people I have never met in person to wish me well and to check in on me. I am literally blown away by the love I feel from so many.

So I'll leave you with that.

Blessings and peace,

Lizzy

Staying Sane (Barely) During Myeloma Stem Cell Transplant Hospital Stay. PTSD? I Believe it is REAL

I'm not one to complain a lot. I've taken myeloma in stride and taken the KICK ASS approach. But I am complaining BIG TIME because I FEEL LIKE IT. Because the mental fatigue of a hospital stay just about pushed me over the edge of sanity. And we don't talk about it enough (or ever). So I rant, rave, and probably share too much. But let the dialog begin. Hey Myeloma Oncologists: Our heroes, we love you, but seriously, you need to read and listen to this one. I wrote this for the Myeloma Crowd.

Here it is in its entirety. Let's spread the word far and wide, please!

Lizzy


SCT Postcard From the Edge: Surviving My 5-Day Hospital Stay For Myeloma       

By Lizzy on November 9, 2015 Life With Myeloma

BY LIZZY SMITH

Is there anything more emotionally or physically taxing than a stem cell transplant (SCT)? I know there are many of us myeloma warriors out there who must answer “no.” SCTs are intense and hard, emotionally and physically. And I knew this because I did tandem transplants in 2012. Honestly, I was so sick and overwhelmed with my diagnosis, life, treatment and how awful I was feeling to remember big chunks of it. Like, literally, there are months I hardly remember anything at all. My mom, dad or children will mention something and I look at them blankly. Really? That happened? Are you sure? And since healing from those SCTs, I’ve embraced life in Big Huge Ways. I made a real decision to do so, and I think I live my values almost every day.

Which means that when my doctors mentioned another SCT, I immediately declined. How about never? Clinical trials. Let’s try this drug and that drug. And had one of the worked, had we been more “on top” of things, would this have been necessary? Ah, the million dollar question. But I must make decisions on the here and now, not the “what ifs.” So I heeded their advice and I agreed to start round one of D-PACE. I already have plenty of cells harvested so at least I can skip that part. But my insurance company required that I be hospitalized for induction therapy. Huh? Last time I did this, it was all outpatient. I carried that four-day “chemo in a bag” in a very cute bag that I splurged on and off I went– shopping at Costco, going to movies, dropping my children off at school. Did I feel really horrible during D-PACE? Now that I look back on it, I think I did. I have slight memories of walking around Target feeling like I was floating when, in fact, my feet were very much on the ground. And I remember that everything smelled of this sweet chemo-smelling “thing” and the smell of my own skin made me want to gag. I took lots of baths and lotions and, still, I could not get rid of that “smell.”

So, regardless of any of that, I agreed to check into the hospital for five days to start induction. I went in optimistic and happy. I went skydiving the day prior, I packed up cute clothes. And I checked in. And after five-days, I have to be honest, for the first time in my entire life, I think I ended up with a good case of Post Traumatic Stress Disorder from sitting confined in a hospital when I didn’t feel all that bad. The mental and emotional fatigue is something that, at least to my memory, I have never felt before. Sheer panic. Like “I’m going to be sick, or my heart is going to pop out of my skin, or I need to get UNHOOKED from this blinking bulky IV cart RIGHT THIS SECOND.”

I didn’t have a total panic attack in the hospital, but I almost did. On Friday night very late, they unhooked me of everything and I just needed to wait for morning to arrive so my dad could spring me from the hospital. Now I have to be fair– if you’re going to be stuck in a cancer hospital, Huntsman Cancer Hospital in Salt Lake City kind of rocks. It is beautiful. There are spectacular views. The room service menu is extensive and good. And the nurses are amazing. But it’s still a confined space. When I finally got home, I was the only person there for about an hour. I had total silence in my home. Home. I was HOME. It was quiet, clean, bright, refreshing and peaceful. And then that night as I went to bed, I had full on panic. I woke up several times throughout the night in a cold sweat, or a hot sweat, thinking I was back in a hospital room. The blue digits on the alarm clock were the same color as the colors in my hospital room. Get me out of here, I wanted to scream. I thought I’d be sick. I talked myself to calmness. Yoga breathing. Prayer. It was ok. I was safe.

It’s been a few days now. Here are new observations or take-away’s up to this point:

1. If you go into the hospital, I highly recommend you ditch their awful tiny little inadequate blankets that sometimes felt they were going to choke me. Bring a nice fluffy blanket or comforter that you love.
2. Bring something that smells not too sweet. The indescribable “sweet smell” of chemo was almost more than I could take at times. Thank goodness for peppermint oil that I could run under my nose for a respite.
3. I checked into the hospital weighing in at 137 pounds. Within 48-hours, I had gained 10-pounds. Impossible. It was water weight and I felt like I was carrying around three whole watermelons in my tummy. And I looked like I had triplets in there, too. The good news is that it took me two days of getting unhooked from the chemo and fluids and IVs to lose 13 pounds. I spent a lot of time in the bathroom draining and it felt fantastic.
4. I cannot believe how scary I’m eating these days. Like I really try to eat super healthy and organic, with almost no meat and loads of fish. I gave up completely. These days, I have absolutely no control but I plan on giving myself until Friday before I force my diet to come to its senses. At this point, I’m surviving Hell, I get to do whatever I want. And what I crave most is (I can’t believe I’m even typing this), Fritos and dip. Seriously, I never eat chips, ever, and never Fritos. And on Day 1 of my return home from the hospital, I ate an entire bag and I didn’t even feel disgusting when I was done.
5. I hate coffee at the moment. I bought some the other day and literally found myself in the bathroom throwing it up. But I have discovered a tea that I am obsessed with at Beans & Brew. Today, I felt pretty crappy. I dropped my children off at school, got my tea, came home and sat in a chair and watched The Price Is Right while sipping tea. It was quiet and peaceful. And I slept. I have a very hard time allowing myself time to recover and nap. This time, I am TAKING IT ALL, no excuses.
6. I am far weaker than I remember from the first time I did this. When I got home, I needed help propping myself off the toilet (sorry, TMI). I had to grab for life the counter. How did I have not enough stamina for even that, I wondered. I am utterly baffled by this one. On day 1 back from the hospital, I went downstairs to put some clothes away and coming back up those stairs felt like I had huge heavy weights on my feet. I felt so… off kilter. Heavy.
7. I really need to be careful at night. I woke up in the middle of the night and I literally could not walk straight. I almost fell twice. I am so klutzy. I need to be ultra careful.
8. Some smells still make me want to cry. My mother, bless her heart, did all the laundry for my children while I was in the hospital. I opened up the bag she sent over and the sweet smell of laundry that I usually love almost sent me over the edge.
9. Mornings are hard! Now this one I remember from my first round of SCTs on diagnosis. Mornings are super tough on me. It takes me hours to feel “right.” I am doing a big work-around on this. I take baths at night instead, I lay out my meds the night before for morning so I don’t need to use my brain so much, and I allow myself time to get up for a few minutes, sit down, get up, sit down again. It is a long process and I just have to take it a step at a time. It is such a relief when I have my children dropped off at school and I can just be done.
10. And the PTSD seems to be waning a bit. I expect tomorrow to be a bit better, and the next day better than that. And when all this sordidness is done, I am celebrating BIG with a fabulous trip. I don’t know where that will be yet but I’m endlessly looking at pictures and dreaming. Planning. Because I deserve a Very Big Huge Treat.

And to my fellow myeloma warriors, may we continue working on finding those advancements, new treatments, and a cure. They are to be found in clinical trials, very exciting trials that are opened right now and they are awaiting us. Because some day, we just have to put SCT and chemo to rest for good.

On Sunday, I took my daughters to the movies. It was a near empty theater, I kept my fingers out of my mouth, and I used loads of hand sanitizer. It felt good to sit, do something normal, spend time with the girls, and be reminded that life is still out there, away from needles and meds and labs and doctors appointments. Those mental moments are so critically important to us. Embrace them as often as you can.

Peace and love,

Lizzy

I'm home from the hospital!

I think I have PTSD. I was discharged yesterday morning from Huntsman Cancer Institute after five days for induction therapy for stem cell transplant. Please, Lord, don't let me need another round of this! My stem cells were harvested four years ago so at least I don't have to go through that. But my insurance company required that I spend these first days of induction D-PACE therapy days in-patient. It was far worse than expected, I have to say. Physically, I was fine. Emotionally? Not so much. By Day 3 I was going absolutely stir crazy. The smells of chemo and hospitals were more than I could take. Those tiny hospital blankets... All of it. Just writing about it is making me want to push back a gag reflex.

So while my nurses and doctors are great (and they really are), and the food actually quite good, nothing could stave off the feel of total isolation and mental fatigue that started setting in. By my last night there when they finally unhooked me of those horrible, awful IV carts, I was on the verge of a mental breakdown. I woke up early, took a shower, packed up, and waited for my dad to spring me. When we stepped outside into the natural sunlight, I almost started crying. The feeling of sheer joy and relief was overpowering.

I got home, unpacked, and my children and husband came home. Home! My family! I did it! We went grocery shopping. We cooked dinner. We watched football games.

And then last night, I woke up at least three times thinking I was back in the hospital. Total panic set in. Cold sweat. Hot sweat. I think I wanted to be sick.

Today is a new day. I am assimilating into having freedom. If I need more days in the hospital, I'm going to need serious therapy. I seriously don't know how those of you who enter a hospital for a month or more to do a transplant do it. My hats off to you. It is grueling and awful, cruel and un-fun. But what is our option? We take it one day at a time, this myeloma journey, don't we?

Blessings, my fellow warriors,

Lizzy

Day #2: My Auto Stem Cell Transplant for

Yesterday I completed Day 1 of my stem cell transplant. 

Here's what I packed:

-Panties and bras for each day, withe a few extras just in case

-One pair of fuzzy socks per day of stay so I get fresh clean ones each morning to wear

-One pair of either yoga pants or leggings for each day of stay (a little fashionable, very comfy)

-One light top for each day because if I get cold (and I do), I just as for another blanket

-Dental floss (ok, I forgot this but asked William to bring up some for me today, which he did)

-Cotton balls (forgot these, too, but my mom brought them up this morning)

-Toothbrush and toothpaste

-Razor

-Yummy soap, lotions, and shampoos (I still have hair, after all)

-My laptop

-Book

-Magazine

-Cell phone and chargers

Here's what I've been doing to stay busy:

-My mom, dad, brother and William came up for a visit. We met up with another myeloma survivor and friend, Steve, who just finished his third transplant a few months ago. We got lunch and chatted. It was nice. And I ate, boy did I eat, even a Big Huge Cookie with chocolate chips, nuts and coconuts. If I have to sit in this hospital, I get to eat whatever I want, is my take. Good idea? Probably not. All goes as planned, I am being sprung from this place on my BIRTHDAY.

-I slept almost not a wink last night because the stupid buzzer from my chemo bag kept going off like every 45 minutes. If a hammer or rock were nearby, I would have destroyed this thing, one happy whack at a time. Bang bang bang into silence. That did not happen. Instead, it almost sent me into needing therapy, but not for cancer

-I am writing articles

-I am going to take a nap at some point

-I might watch a movie.

-I definitely have an article I want to read up on in my Vanity Fair.

And here's how I'm feeling:

-Great. Go figure. Someone undergoing SCT should look and feel sick, right? Please, Lord, not me. Not yet anyway. 

As Steve and I were waiting for the elevator, strapped to our IV carts, a nurse said, "I love seeing cancer patients looking like you two!" With a caveat! Steve is in maintenance therapy and I'm just beginning down this joyous road, so let's see, let's see. Prayers, cross fingers, kick this thing in the ass then go on a trip?

I look outside my private room in this hospital. It is overcast and windy. I feel cozy. I am blessed. I feel loved and supported and, at least for now, my appetite is raging and I am comfy. And I will win this battle, one tiny step at a time. Setbacks? Who knows, but it will get better.

Here's what I did on the day prior to my stem cell transplant for myeloma (make that SCT #3)

So tomorrow, I am starting my stem cell transplant. That means I am entering the hospital tomorrow for five glorious days while I receipt D-PACE-- high chemo. I get to come home on my birthday on Friday if all goes well. You know what is really twisted? Now that the decision is made to go this route, I'm relieved and let's rock and roll. I want to go to the hospital and rest. I am exhausted and burned out and maybe I'll get some peace, rest and solace there. And I'll buy cute wigs and start from Square One and get a re-set and enter a clinical trial at NIH or U-Penn when this is all done that involves Car-T Cell therapy that may be curative and I am rambling but there you have it.

So now that the inevitable is marching forward, what is a girl getting ready to go into the hospital to do? I could sit in a corner and cry. Or I could do nothing and lament. Or, since I'm feeling quite good, I could cross something off my bucket list. Go into this who stem cell transplant thing with a BANG. I got permission from my doctor, and I went SKYDIVING today. I was fearless. I jumped out of the plane first and didn't break a sweat. I wasn't nervous for one tiny second. And it was exhilarating and fun and I'd do it again in a heartbeat. You want to check it out, click below. I highly recommend it.

https://youtu.be/mF8vbXfA0MA

And then I came home and packed up. Comfy cute clothes, a laptop, my trusty Vanity Fair magazine, and book Killing Jesus.

Wish me luck. Hard to tell I'm "that sick" from the video. But I have chosen to live without regret, fearlessly, with joy and happiness and full speed ahead.

Peace my friends, I will definitely keep you posted on the next leg of my Myeloma Journey.

Lizzy

Want to know what truy hitting rock bottom is? Here's one powerful story...

Tonight I'm up rather late and can't sleep. So I've decided to write and get caught up a bit. I wrote my latest Divorced Moms column (see below) and in a few hours, I'm going skydiving. Afterwards, William is cooking dinner for the whole family (it's my brother's birthday) while I pack up the girls and me. You see, on Monday morning, I am entering a five day hospital stay as part of a new clinical trial I've embarked on (details will come next week). I am having another auto stem cell transplant. This means four days of non-stop chemo in a bag, which my insurance company is requiring that I do as in-patient. So I am packing up delicious smelling shampoos, cute but comfy clothes (no reason I can't walk around the facility and, weather permitting) sitting outside in the lovely gardens and canyons, laptop, book and latest Vanity Fair. I can't remember how awful I feel during my 4-day chemo in a bag but if I need to sleep and rest a lot, I will. On Friday (my birthday, I get to go home to recover). If my numbers are where they need to be, I'll be doing the transplant a few weeks later. If not, I'll do another stink of chemo in a bag in-patient, followed by the transplant. The entire regiment will be done by Christmas, most of it I'll be home so lots of down time.

Last time I did this, I was far sicker, we had to harvest my stem cell transplants, and I had to do two back-to-back transplants, which is all far harder. Still (knock on wood), I came sailing through both. I did the big Amtrak trip across the country between the two, took up long walks and yoga, hung out with the kids at the pool. It was a touch, weak recovery, but I LIVED and I found time and energy to enjoy life. I hope the same is the case here.

So yesterday, we had a fun all-day Halloween fest. Nothing big or huge but it was fun to stay dressed up all day, do some shopping, get some lunch, and allow the girls to hook up with friends and trick or treat. They have today only the option of letting me buy their candy for $20 and I throw it all out. They've always taken me up on that offer-- pick a few pieces of their favorites then get cash. I hope they do this time, too, because, eeew, all that sugar.

So I am heading into transplant with a BIG HUGE BANG of jumping out of a plane. Let's see how resilient I feel coming out of the other side of this thing. Oh, and after my transplant, I will likely head to NIH in Washington, DC to get follow up Car-T cell therapy. It's free because it's run by NIH and there is a travel stipend to help with air and accommodations. Plus, this treatment is potentially curative and groundbreaking. Thing is, I have to get my markers down first, hence this dreaded transplant. Say prayers for me! And enjoy my latest blog post.

When An Addict Bottoms Out. A Powerful Journey Down Redemption Road
by Lizzy Smith for Divorced Moms                    

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November 01, 2015                

This is what hitting rock bottom might look like when you are married to an addict. Because an addict will never start the long, painful, lonely journey to health without hitting bottom first. When I thought I saw my now-ex hit rock bottom a few times during our marriage, when things got so unspeakably horrible between us, I thought, FINALLY, he'll start turning his life around! I was wrong, it was all a ruse, lack of will power, lies, you name it.

But sometimes, you hear stories from others and you think, “Now how does it get worse than this?” And when it really can’t, and there is nowhere left to go, the addict begins doing something different because life has truly become unsustainable for them and everyone else.

Such is the story of my friends “Wilma” and “Barney”, who I knew way back from our college days together. They were young and in love and I saw love and adoration in Wilma’s eyes every time she gazed at Barney. She acquiesced to everything he wanted and simply adored (even worshiped him). I knew they were destined for marriage and just days after they both graduated from college with degrees in hand, they had a big huge elaborate wedding and three adorable little boys, one after the next. They bought a house with a pool out in the Southern California suburbs. Wilma started a pretty successful homebased business while Barney found a solid job in Corporate America. They got a dog, Joe, a big huge golden retriever, and two cats, Fluffers and Buttercup, that sat on Joe’s back and gave him endless back massages. They were a sweet family and it was fun to go hang out over there. They were achieving the perfect American dream: frequent get-away cruises from the nearby terminals in Long Beach, family parties at their house, nice cars, cute boys, and a boat to go fishing in--quite the enviable life, right?

Wrong.

Barney started drinking with guys at work—they had a lot of privacy on the docks and many were also dabbling in drugs. To our knowledge, Barney didn’t do drugs but he loved his beer. Lots of it. And on his way home, the co-workers stopped for happy hours. And by the time Barney did make it home, he was stumbling, mumbling drunk. Wilma was sick with worry. He was going to get arrested. Worse yet, he was going to kill someone while drinking and barely able to get out of his car by the time he made it home. Wilma considered calling the police to report his drunk driving but she was frozen in fear. In California, it was a mandatory find, huge increase to get car insurance, and time spent in the slammer. He could get fired. They could get sued. She was numb, hopeless and beginning to feel that horrible emotion- contempt. And rage. And revulsion.

Keep reading...

(sigh) It's back to a stem cell transplant for me

A very happy day! This guy means everything to me. I "get" to fight myeloma, this time with a very kind, amazing husband by my side.

Well I have had a great run with my tandem stem cell transplants in 2012. I relapsed in February 2014 and got on a regiment of Kyprolis-Dex-Revlimid and got back into remission for six months. I got on a clinical trial but was kicked off of it because my total white blood cell counts were too low. And my doctors and I have determined that another SCT is in order, we have put it off long enough. This will reduce my tumor burden significantly, if not put it back into remission entirely. After I have recovered, I can likely get into a clinical trial at NIH that is using exciting Car t cell therapy to keep me in remission potentially forever.

Now that this decisions is made, I am relieved and, dare I say, excited. I'm trying to get permission from my doctor to go skydiving on Sunday to welcome in my new stage of treatment. Something a bit over the top. After I have fully recovered, it is time for a crazy amazing William-Liz trip. Not sure yet but just thinking about it is fun.

When this decision was made and I told William, he said "This is life. I'm all in. I love you and I am so sorry you have to go through this and I am here for you completely," and we both cried. What a huge contrast when I told my ex husband, Bob the Great (Alcoholic): "You are a liar, lazy, thief, drama queen who doesn't want to work and wants my money!" (spit in face) I am so blessed. And, of course, what can I say about my fearlesss, supportive parents? No one fights disease alone, and that is so true in my case. I have an amazing support system and I will be and do just fine.

My medical insurance requires that I be hospitalized during days 1-5, which begins Monday when I get a cocktail of chemo drugs for four consecutive days. I did this all out-patient during my tandem transplants in 2012 but new insurance, new rules. If one must be stuck in a cancer hospital, Huntsman is not a bad option. The views are spectacular. I feel like I'm floating on an airplane. I have blue-ray and room service with delicious food options, I wear my own clothes and, because I remember this part like it was yesterday, I felt pretty good. So I'll be writing, binge watching TV, and intently walking the halls to get exercise. Weather permitting, I'll sit outside. And I'll read. 

SCTs are awful but we make the best of them. What other choice do we have?

I'll say it again... Myeloma is a journey. I'll win, but there are insane numbers of bumps and curves in the road. This one nearly takes my tire off. And life goes on. 

Should this myeloma warrior back in remission get another stem cell transplant? If only I had a crystal ball...

To Transplant (Again) Or Not? The Million Dollar Question     

BY LIZZY SMITH for www.myelomacrowd.org

In mid February, I was getting ready to head out for the evening. My phone rang. It was Mary, my PA from Huntsman Cancer Institute where I’ve been treated since my 2012 diagnosis.

“I’m sorry to have this conversation with you over the phone,” she said. “But I’m looking over your latest labs and it looks like there is disease progression. You are no longer in remission.”

The banality of bad news. It’s so ordinary and comes without warning.

With shaking hands, I took copious notes of some lab numbers that I can’t remember. Oddly enough, it took just a few hours before I calmed down. I literally talked myself off that cliff as I reminded myself that myeloma is a journey not a destination. I had survived tandem stem cell transplants and got two and a half years of remission. I kicked cancer in its a** once and I could do it again. I went to clinic the next day to pick up that horrid 24-hour urine collection jug and had a bone marrow biopsy (not my favorite test, to be sure, especially since I never get sedated for it). Days later, it was time for an appointment with my oncologist to go over the facts and plan.

Sure enough, Dr. A confirmed, I was out of remission and I was to start the triple-drug combo done in the ASPIRE trial: Carfilzomib twice per week, 40 mg of Dex once per week (double the dose that I had been on, yuck), and daily Revlimid. Three weeks of this regimen with a week off. My fiancé, Bill, and I were getting ready to head on our trip to Argentina, Brazil and Uruguay just a week later. They cautioned me against going: it was important that I follow the drugs exactly as was done in the trial and if I went on the trip, I would be “off” that schedule by some five days. Perhaps it would make no difference but then again, it could.

I thought about this advice for about 10 minutes. I wanted to go on the trip. It was too late to cancel and traveling is my passion. While I don’t necessarily recommend anyone follow my example, I made the decision to proceed with the trip. Should other myeloma warriors do the same? I would never advise either way. Our journeys are our own, each is intensely personal, and there are no hard answers in myeloma. We just have to listen to great doctors and eventually just press forward with a decision that we make. And so I did.

I started my new treatment combo that very day and boarded a plane as scheduled bound for Buenos Aires just hours after my second Carfilzomib infusion appointment. Bill and I had a fabulous vacation and when we were in Montevideo, Uruguay I randomly told him that I felt I was already back in remission. Why, he asked? I didn’t know, I just “felt” it.

My new treatments have, overall, been going well. The side effects are less intense than my prior combo of Thalidomide-Dex-Velcade. I experience less fatigue and my chemo brain seems to (slightly) have ebbed. I hate the extra day I spend in clinic (dang, cancer can be so time consuming!). On the days I take Carfilzomib, I sometimes wake up in the middle of the night with mind-blowing leg and foot cramps that make me cry out in my sleep. And thanks to the double-dose of Dex, even with two Ambiens, I still can’t sleep more than two hours. The day after Dex, I am indescribbly tired. Still, I don’t complain much (after all, I’m alive!). I cope by knowing that on Mondays, I can watch TV and write articles almost all night long. I take luxury baths in lavender oil and Epsom salts and read. I diffuse more lavender and lemon oils in my bedroom and binge on Netflix’s House of Cards and Dr. Phil re-runs on the OWN network. On Tuesdays, I’m a mental waste. I go to clinic and that’s pretty much it. I told Bill that we either go out to eat every Tuesday or he can cook and clean because I just can’t. I need lots of leg and foot massages with peppermint oil and, well, there you have it. I’m too tired on Tuesdays to even be cranky. My daughters know that if they need homework help, they aren’t getting it from me. Thank goodness my parents are here to pick up the slack. I don’t know what I would do without my support structure. I am so lucky and blessed.

A few days ago, I had my follow-up doctor’s appointment. After just two months of this new treatment combo, guess what? I’m back in remission! I love that word. Let me repeat it:
REMISSION!

REMISSION!

Now the BIG QUESTION: To transplant (again) or not. Studies seem to say that if I do another stem cell transplant while I’m young(er) and healthy and in full remission, I might stay in remission longer. On the flip side, as many of us myeloma warriors know, transplants are HARD. And there are so many new drugs and treatments that I haven’t used yet, and many more in the pipeline. Can I avoid the dreaded transplant for another decade or a few years or maybe forever?

I told Dr. A that I didn’t want to think about anything for two months, then we will meet, come up with a plan, and then I’ll get a few more opinions. Even if I agree to a plan, I have many months before I’m committed. If I had to decide NOW (and I don’t), I would decline the transplant and stick with meds. But in a few months, who knows if I’ll change my mind. Back when I did my first transplant, I decided to decline the second. I was already in remission, after all, and my third and fourth opinion doctors said that they wouldn’t do tandem transplants on me. And then, without warning, I changed my mind and did the second. I just made that decision on gut instinct and went with it. Who knows how it’ll happen this time around.

Until then, I’ll enjoy the remission. I’ll enjoy life. With my children almost done with school for the year, we are heading on a road trip to Seattle and Canada. That sounds lovely.

And this is advice that I am comfortable giving other myeloma survivors: LIVE!

Should myeloma patients achieving complete response with induction therapy defer transplant?

A VERY important question in the world of myeloma. An article I wrote for www.myelomacrowd.org.

Should Newly-Diagnosed Myleoma Patients Defer Transplant?

BY LIZZY SMITH

Is it reasonable to defer transplants in patients achieving complete responses to their induction therapy? MedPage Today asked that question of three top myeloma doctors:  Matt Kalaycio, MD, of the Cleveland Clinic, Carol Ann Huff, MD, of Johns Hopkins, and Hani Hassoun, MD, of Memorial Sloan Kettering Cancer Center in New York City.

To watch the interview, click here: MedPage Today: Should patients defer transplant?

The answer is… It depends who you ask. Dr. Kalaycio says to proceed with the transplant; Dr. Huff says perhaps wait; and Dr. Hassoun says there is no definitive answer. All have great points– there are some studies to suggest one answer over the other, and each of us patients need to decide which protocol makes sense for us.

For me, when I was first diagnosed with multiple myeloma in January 2012, I immediately began treatment for a tandem auto stem cell transplant. It was pretty crazy– I had 95-percent myeloma cells in my bone marrow biopsy (that’s no typo!) yet I had no bone lesions or organ damage. Just before my stem cell transplant, I was almost in remission thanks to my initial high-dose therapy. I asked my treating oncologist if I should wait to have that transplant until my numbers started creeping back up. Ultimately, we decided to treat me as aggressively as possible. I was young and otherwise really healthy and we felt that my body could handle the treatments. I can’t say that, knowing what I know now, I would make a different decision but I’ve always wondered if that was, perhaps, the “best” or “only” viable option for me.

From www.myelomacrowd.org: Careful what you wish for!

I used to want to rest. Now I have to.

The old adage is true: Careful what you ask for!

Back in my prior life, pre multiple myeloma, I had a very stressful career, was in a failing marriage, had a home and vacation home, two young children, two dogs, and more responsibility than I care to think about. Each day was a struggle and I was exhausted and overwhelmed pretty much every single day. I used to daydream about just being able to rest and sleep. My idea of heaven was a hotel room, no children, no responsibilities, a TV, a bathtub, a book and room service. If only!

…And then I was diagnosed with multiple myeloma. I went on medical leave with my employer, left my husband and filed for divorce, packed up my two daughters and as many belonging as I could fit in our Jeep Commander, put the cat in a carrier, and drove from San Diego to Salt Lake City, Utah. We moved into my parents’ basement and I entered treatment at the University of Utah’s Huntsman Cancer Institute. I immediately began being prepped for a tandem stem cell transplant.

A few months later, I got my “wish.” Here I was, in a “clean apartment” just a few blocks from the hospital. Actually, it wasn’t an apartment, it was a Marriott hotel with a small kitchen. I had no immune system and had just received my stem cells back into my body. I was awaiting my body to recover so I could go home and let the healing process begin. I was in that hotel, my children were at home some 35 minutes away, I had no responsibilities at all. I had a TV, a bathtub, a book, a stack of magazines, a flat screen TV and DVD player, and a bathtub. Room service (which I couldn’t eat, thanks to my not having an immune system that was functioning) was just a call away. Instead, I had a refrigerator loaded up with all the processed, pre-packaged foods that one could ever want. Frozen burritos, pizzas, canned soups, pickles (which for whatever reason, I craved like a drug addict needing a fix). I did buy lots of fresh fruits and veggies that I cooked up beyond recognition, but at least they weren’t canned and loaded up with extra salt and chemicals.

The problem was that I was so bored that a near panic began to set in. I felt closed in and isolated. I could sleep, read and watch as much TV as I wanted. I could Facebook and surf the Internet and call all my friends. But, really, the only thing I wanted to do was take baths, watch TV, munch on snack foods (yes, I got the munchies during my transplant and gained weight, go figure), and channel surf. I desperately wanted to leave but my body had no energy. Getting out of bed took serious concentration. My mind and body were not synching up and I hated it. One morning, I woke up nearly crazed. I had to get out of that hotel room. But I didn’t know how I would find the energy to get up and get dressed.

I concentrated on one thing at a time. Get up, brush teeth. Check. Wash face. Check. Put on clothes. Check. Put on wig. Wake Dad up (my caregiver). Find shoes and put them on. Check. Take loads of pills. Check. (Getting those pills down my throat was not easy. Though I had no sores on my mouth, my esophagus was clearly inflamed because eating was easy, swallowing liquids and pills was harder.) Put on mask that I could hardly breathe in. Check. Walk to car. Check.

My dad and I drove through the beautiful Utah canyons around Bountiful, Utah. We found a beautiful neighborhood and admired the homes. I craved a soda but I stopped myself from indulging. Instead, I had my dad go into a convenience store and buy me a bottle of Smart Water. We talked. And getting out of that hotel room for a few hours and sitting in the car (with the windows rolled up) was a welcomed respite. I had to get out of that hotel room and see people and be reminded that life outside of myeloma existed. It helped.

We went back to our hotel room and I took a long nap, watched some Dr Phil, ate a bunch of pickles, and later, we drove to my daughter’s soccer game. I couldn’t get out of the car but it meant everything to my daughter to know that mom was in the vicinity.

Not everyone can do what I did during transplant. Everyone’s body and stamina level is different. I had extreme fatigue– mentally and physically. But I also needed to get out and do things. All that rest I once dreamed of in my prior life? I suppose that, in reality, it just isn’t me. Even today, some two years post transplants, I still hate to rest a lot. I get my extreme fatigue days, usually two to three days post dex, and I need to sleep. I allow my body that rest. But usually, I push myself through that fatigue. I have found that if I sit too much, I don’t feel better, I actually feel a lot worse. I discovered this on a trip to Washington, DC between my two stem cell transplants. If I sat and did nothing, my fatigue and “strange” feelings of “fuzziness” never went away. But if I got up and walked and did site seeing, those side effects almost disappeared. Which is not to say that I recommend doing anything crazy. Rest is good. So are naps. But so is moving around as much as you can. I push myself. Do I push too hard? Perhaps. Perhaps not.

But during transplant, the mental and physical fatigue were intense. Sleep and room service and a TV were not all that I had once dreamed of.  Go figure. How did I get through it? My favorite TV shows, Vanity Fair magazine (cover-to-cover, though my dad bought me the issue in Spanish and had to go back to the store and get me the English version), catching up on Mad Men via DVD, and taking naps. Day after day. I actually began to look forward to my clinic visits and lab work. On my second transplant, I actually engrafted a day early and I knew it. I knew my body had started to recover. When the nurses said I could go home, I wasn’t surprised at all. In fact, I believe that I engrafted the day prior, I just didn’t have my blood work drawn that day. When I got home, the first thing I did was go to the spa and get a 90-minute facial. My skin felt like a withered prune. I was home before my children got back from school. When they did, I could hear their “Mommy’s home!” shout. They saw my car in the driveway. Since they weren’t expecting me home a day early, it was a welcomed surprise. They were ecstatic. Hearing their voices made me ecstatic.

The path to feeling “better” wasn’t that easy. My heart often pounded by simply walking up the stairs. Short walks around the block left me exhausted. My brain just didn’t function that great. Concentrating on sentences and verbalizing thoughts that were in my head was a struggle. I became cranky easily. But each day got just a bit better. Two months later, I went skiing. I couldn’t believe it– the year prior I had just been diagnosed and I felt so horrible. While the day of skiing left me exhausted beyond belief, the fact that I did it was amazing! One day, I hiked a big trail. Another day, I took an eight mile walk. Progress!

I still haven’t gone back to work yet. I am on maintenance therapy that includes weekly Velcade and Dex, and a daily capsule of Thalidomide. I have major chemo brain. Some days, I need to sleep or simply be horizontal for a few hours. I get a cold every four weeks. If someone is sick, me too! I need to have flexibility and time to concentrate on my health. I try to eat really healthy, though I over indulge too often on cookies and fries (though not together!). I do Bikram yoga from Fall through Spring. I do power walks. I try to sleep eight hours a day or more. I try to stay positive. I use lots of alternative therapies to combat side effects that include some neuropathy in my feet, insomnia, and stress. I write, journal and blog because I love it and I do it to help others. I travel, because life is about creating memories and learning new things.

This myeloma journey has been quite the surprise. I have learned a lot about myself. I have learned I’m stronger than I ever thought. I am resilient. And I am an optimist. Those traits have served me well thus far in my fight to get and stay well. A mind-body connection? I strive for that every day. I often talk to my body. I remind it that we have to fight cancer cells together. And my sleeper myeloma cells? I talk to those, too. I tell them that if they proliferate, we’ll all go down together. Survival is a group project. I pray, meditate, and laugh. On my dex days, I swear a lot and lose my composure with my children too often. But I’m getting through it. One day at a time.