Wednesday, August 28, 2013

Dating with cancer

When I first started dating after fleeing an abusive alcoholic husband in the wake of getting diagnosed with cancer, I wanted to do things right. I made a few pledges to myself about the kind of man I was looking for:

1. No signs of alcoholism or substance abuse. I am fine with a guy who drinks occasionally, however, drinking and alcoholism are two very different things. So I promised myself to carefully watch a guy's alcohol consumption. If alcohol changed his personality in any way, no thanks. My ex husband would wring his hands, get fidgety, disappear for awhile, or get incredibly cranky like a three year old in need of a nap. It was so laughably ridiculous and anything that's even remotely similar is a warning sign for me to run away fast

2. Kind and thoughtful. I was not going to rush into a relationship with the first guy I found. Instead, I would take my time, get to know someone, and let things progress slowly and naturally

3. Honest. No excuses

4. Ample time after a split with his ex wife. Everyone needs time to heal and adjust after a breakup and just jumping back in to another relationship shows that a guy is emotionally very sick in the heart and head. (I've gotta say-- any woman who dates a man who's straight out of a marriage is crazy. She's just getting a very sick, wounded, and troubled man and nothing good can come of that. That's how I found my ex husband-- he'd just split from his wife just weeks prior. Of course, he lied to me about the date of their split or there's no way I would have been dumb enough to have dated him even once. Oh well, bygones are bygones, right? Never trust a liar, hence see #3.)

5. Great relations with his children. No apologies or excuses for the fact that a man has failed his kids

6. He must not talk poorly about the mother of his children. Of course, relationships break down, hence a divorce, so telling war stories about a failed marriage is expected, but saying horrible things about her character is entirely another. Hey, you made children with her, you should at least respect the fact that she's your children's mother and have the self control to keep be respectful

7. Able to handle stress well. Having some healthy coping mechanisms to handle life's challenges is imperative. No taking those stresses out on the innocent bystanders around him

8. Not scream or raise his voice at me. I've developed a total fear of raised voices

Well, in summary, my list above was basically the opposite of everything my ex husband is to ensure I don't end up with a guy just like him (although, truth be told, I do believe my ex husband is in a class all his own). Plus I had picked up a woman's trash once before (my ex husband) and no way in hell was I about to do that again (I know Terri was laughing her ass off at my expense while I lived in her trash's cesspool of alcoholism, temper tantrums, and deceit).

My next Big Question was: How would I handle my illness? Do I tell a guy upfront? How do I tell him? Would anyone want to date me? And, really, if he didn't want to date me because of my illness, oh well! That was my new reality. All those questions aside, I knew I'd rather be single than just take anyone. So I've become very picky. Like crazy insanely picky.

Jay, who eventually became my stalker, was the first man I dated. I told him about my illness right off the bat. He didn't care. In fact, he was totally supportive. He went with me to chemo appointments, brought food to my "clean apartment" when I had a food craving, and made me organic soups from scratch. But the minute he became too demanding and showed signs of getting angry with me, I was done. The fact that he then followed me everywhere I went and wouldn't leave me alone is a whole other topic, which I've already written about on this blog

A few months later, I started dating Andy. I told him that I was sick but didn't give him the big C diagnosis right away. I decided that it was my story and until I knew someone well, I didn't need to divulge the details until I was ready. Andy was great, like I had butterflies in my stomach when I would see him. But then I saw a few things I didn't like (which I'll keep private for his sake). Despite liking him a lot, I let my head prevail over my heart and I cut him loose too. He wasn't very happy and it was hard for me. But I made the right decision and never looked back.

Then I started dating three men around the same time: Todd, William and Rod. I told Todd about cancer on our second date. But Todd had drama with his kids and his ex wife-- like mind numbing horrible. Like almost as awful as the things my ex says about me (all of which are outright lies) so I just couldn't listen to it. Plus he had drama with his kids-- like one of them didn't even like her dad. Wow, if that wasn't total deja vu (my ex husband had a daughter who didn't like him either). I ended it. He tried several times to come back but I was just done. I never told Rod about my true diagnosis and he traveled all the time and I got bored with him and so that was it.

Then there's always been Michael-- a guy I've dated off and on since 2007. When I moved here, Michael moved not far away from me. He knows me very well. Since being here, he is one of my best friends. He knows about my illness and he doesn't care. We have fun together. But I can't say that I'm in love with him so we're in this cool holding pattern and I absolutely adore him.

And, lastly, William. I write enough about him on this blog so I don't need to add to it right here. But I didn't tell him about my cancer diagnosis initially. One night about a month after meeting, he told me some very private things about him and I reciprocated. The timing was right.

So far, my battling cancer and dating hasn't been a problem. I don't have a standard answer on when to tell someone intimate details about health. I take it on a case-by-case basis. If a man doesn't want to date me because of it, that's perfectly ok, I wouldn't want him anyway. I'm enjoying dating, getting to know my partners, and getting to know myself. Rushing into a relationship isn't something I'm willing to do. Finding a great guy is far more important and I'm enjoying the very long ride.

Sunday, August 25, 2013

Xrays, boots and thunder storms

There are good and fun moments in life that just need to be captured. So here's my latest.

Xrays
For months and months, I've had persistent lower right rib cage pain and a coming and going of pain on my spine. Finally, I insisted on an X-ray. One of myeloma's symptoms is bone pain. Although my blood work, urine and biopsies are all great news, there's just that one question nagging in the back of my mind every time I feel that pain. So on Friday, we did an X-ray. And the results are... evidence of healing fractures and nothing new. Whooohoo! Every time I get good news, I celebrate. So I am!

Poster child (that's me!). Um, thanks... I think
Friday was a very long day. First, William woke me up at 4:00 AM to take him to the airport. He is in New York for a week for a guys' weekend watching the US Open. Waking up that early should be illegal. I then drove home, got the girls ready and off to school, picked up my mom, went to my long infusion appointment, then met my friend Beth for lunch.

During my infusion appointment, I got a great compliment: one of the nurses said that I came up in conversation during a staff meeting. Apparently, I'm the poster child for myeloma treatment. I never looked sick, I had a great attitude, and I powered through my treatment. Thanks! At least I think.

I broke a promise to myself. Oh well
Several days ago, I realized I had too much stuff and was spending too much money. I made a pledge to myself that other than basic groceries, I was done. And then I went out and purchased:
  • For Siena: 4 pairs of shoes, a stack of socks, a dress, 3 tops, and an American Girl doll with 4 outfits (the latter is for her upcoming eighth birthday)
  • For Morgan: 2 pairs of shoes, 4 pairs of running shorts, 5 running T-shirts, a jacket, and 2 skirts
  • For me: 2 jackets, a pair of jeans, 4 tops, a pair of Sorels, 6 bras from Victoria's Secret, and 3 books
Oops. I have forgiven myself already.

Siena wearing her new dress and one of her new pairs of shoes. She's getting so big!

A gift to me: new Sorels! Hard to think cold and winter and snow when it's still so dang hot outside but it's around the corner and I need to ensure I'll be prepared.

Thunder & lightning (saving the best for last)
On Thursday night, we had a terrific thunder and lightening storm the likes I haven't experienced since I lived in Washington, DC. It was fabulous! William and I were walking out of Walgreens and it was pouring rain. We ran to the car and I couldn't stop laughing. It felt terrific and for that short time, the world and everything in it seemed innocent and fun and perfect and joyful. We got in the car and we were both laughing and I felt perfectly giddy.

It's a nice reminder that I have surrounded myself with only great people in my life. I have successfully cut out the evilness that was in my world for five years. Exorcised it actually. It was an answer to heartfelt prayer. I have cleansed emotionally and spiritually. The physical part is still a work in progress but I'm getting there.

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Saturday, August 24, 2013

RIP James Gerken (Oct 30, 1936- Aug 21, 2013)

Photo: Last night I had to say goodbye to my best friend of 38 years, my Dad.  As many of you  know, he wasn't just a father, but a hero to me.  I am going to miss the calls after the USC games the trips to the Eastern Sierra's, but most of all the unconditional love and support he always showed me. 

Jim Gerken 10/30/36 - 8/21/13
"Grandpa Jim" with his son, Jeff, in the Sierras

It is with a heavy heart that I report the passing of Jim Gerken. He succumbed to mesothelioma, a rare cancer caused by exposure to asbestos.

Jim was an incredible man, father, grandfather and friend. He will be sorely missed. While we cry tears of grief here, there are many on the other side crying happy tears at their reunion.

I can only hope at my passing that those around me will remember me in the way we will remember Jim. I work every day to ensure that is the case. Honesty, kindness, devotion, thoughtfulness, selflessness, and faithful. Those are just a few of the traits that come to mind. I will miss my heated debates with Jim on politics, social issues, and current events. He had a quick wit and was incredibly smart. An avid reader, a lover of fishing and hunting, and a devotion to family and God.

I look forward to spending time with my second family as we lay him to rest.

Thursday, August 22, 2013

The pen is mightier than the sword. Kaiser Permanente responds

Less than 24-hours after I wrote my blog about hating Kaiser Permanente, a representative from that company contacted me. They had found my blog and Twitter post and wanted to help. Long story short, I put the Kaiser representative in touch with Julie, Jim's daughter and my best friend since college. They are working together to get a proper and "real" medical diagnosis for Jim. There may be nothing at all that can be done to save Jim's life but getting a proper diagnosis is, nonetheless, critically important. I'll post a resolution as soon as one is reached. I'm still not a fan of managed care, though it is better than nothing.

The pen truly is mightier than the sword and I am happy to have a platform to help in any way I can.

Wednesday, August 21, 2013

Managing side effects



While I owe my life to modern medicine and I'm incredibly grateful, side effects from those medications can be intense. In case you're new here, I was diagnosed with Multiple Myeloma in January 2012 and immediately started treatment. I was recently asked what my side effects were and how I manage them. So here goes.

My initial treatment plan (Jan-Oct 2012):
  • Six weeks of medications (so many, I can't list them all), which included thalomide, dexamethasone, and a whole host of others
  • Two rounds of "chemo in a bag", where I was given chemo drugs for four solid days, 24 hours per day
  • Two rounds of massive chemo administered through my port for about one hour (during that entire time I had to munch on ice cubes, which made me want to gag for days) prior to both transplants
  • Two stem cell transplants, which included more medications than I can ever remember
That's the very simplified version but, trust me, there's not one simple things about it. I was hospitalized for four days, spent countless hours getting blood transfusions and platelets, lost all my hair, endured sometimes daily doctor visits, and powered through mind blowing fatigue. Despite all of my treatments, I managed to take a trip across the country via Amtrak with stops in Washington, DC, New York, and Chicago, traveled to the Grand Canyon and Arizona (granted, this was for a third opinion at Mayo Clinic in Scottsdale), made serious progress on getting a divorce from my alcoholic husband that I fled from on the day I was getting scanned for tumors, moved my personal belongings from San Diego to Utah, and even managed to parent my two young daughters. Not bad, if you ask me.

But that phase is over!

My maintenance plan: (Oct 2012-Oct 2013):

I am now nearing the end of my one year of maintenance therapy. That includes taking thalomide daily, blood thinners (though now I can take a pill instead of giving myself daily injections in the stomach), dex once per week, velcade (intravenously) once per week, and Aridia (once per month). I go to clinic at least once per week and those appointments range from one to four hours. If I get a mild infection or a fever over 101, I must race to the nearest emergency room. I am still immune compromised so I can get sick often. I do my best to keep myself healthy, like washing my hands often, eating lots of immune-supporting veggies, getting lots of rest, meditating, and listening to my body.

Current side effects

My current side effects from my maintenance plan include:
  • Chemo brain
  • Fatigue
  • Feeling fuzzy
  • Racing heart/breathless
How I work through my side effects

I push myself sometimes beyond what I should. Napping doesn't always stop my side effects so I try a few different combinations. Sometimes I sleep, sometimes I just need to be horizontal and so I'll watch TV or just meditate lying down, Bikram yoga helps (though I'm often very tired afterwards!), I go on long power walks with William and that seems to stave off the fuzzy feelings (but not always). I get weekly massages, which I think has a lot to do with my not getting neuropathy. When I was in Washington, DC, I discovered that oftentimes, the more intense side effects I had often diminished if I got up and moved around. It was really strange how I figured that out. One day, I woke up feeling especially fatigued and fuzzy but we had a day of walking around in the heat. I pushed myself all day and I did pretty well, even though it was a very long day. After that, we had a full day on Amtrak and I woke up with the same exact side effects, which never went away because, I believed, I happened to be sitting. Since then, the worse my physical side effects, the more or try to push through it. Oftentimes, it is the best "cure" out there, though not always. I just be flexible.

My daily schedule

It varies and I plan around what I anticipate to be my most fatigued days. I spend a lot of time taking my girls to their activities (and I overschedule them). I work with Siena endlessly on reading (despite all of this effort, she's reading only at a mid kindergarten level and has ADD). I do laundry, and blog, meditate, and do my yoga or power walks. I also spend a lot of time at doctor's appointments. I've been lucky to have traveled a lot since I completed my initial treatment. Since then, we've been to California three times, Las Vegas four times, Europe, St George twice, Moab, Denver, Idaho, and several local overnight trips. I spend a lot of time with friends, either in person or on the phone. Personal relationships are more important to me than ever and I value and cultivate every single one of them. I cook and bake and clean. And now that the girls are back in school, I have time to hang out with my parents and also William. We are going to explore some of the hiking trails before it gets too cold. I don't read as much as I used to because my eyesight went from 20-20 to something pathetic, thanks to all my treatments. A book has to be great for me to dive in and finish it. I recently read a great novel about Catherine the Great, one of my heroines. My next book is The Shining by Stephen King. I bought that book when we were at The Stanley Hotel in Estes Park, Colorado a few months ago.

What's next?

My year of maintenance ends in late October and I'll be meeting with my oncologists, Dr K and Dr Patel, to discuss another year (or more) of maintenance therapy but it should be less intensive. I don't work now and I'm not sure when I'll go back to work. I'm definitely putting my health first and once I've determined that my mental clarity is back, I'll see. Until then, it's not even on my radar. Pushing through side effects is incredibly powerful-- I feel like I'm telling my cancer to fuck off. So, the big question on what's next? Well, that's a work in progress. I don't know but I'm enjoying the journey as strange as that sounds.

Monday, August 19, 2013

Link for my radio interview on Cancer Nation Radio

In case you missed it, I was interviewed by Chris Irwin's Cancer Nation Radio show last Friday. If you'd like to listen, here's the link: https://www.hightail.com/download/bWJxQk01Qk5Ha1BOTzhUQw  (Note that my segment comes in about 20 minutes later)



We talked about...
  • My symptoms pre diagnosis
  • How I was diagnosed
  • My treatment plan
  • My triple whammy: I got to confront three ginormous life events all at the same time! (cancer diagnosis, leaving my abusive husband, and moving several states away)
  • How I'm doing now
  • This blog
To all my fellow cancer warriors: Keep up the good fight. God bless you all.

Sunday, August 18, 2013

I hate "managed care" (in other words: Kaiser Permanente, you suck)

I have written on this blog about my best friend's dad, Jim. He was diagnosed with mesothelioma just a couple of weeks ago, an untreatable and incurable cancer. Well the diagnosis, as it turns out, is not that "simple." And because he's a Kaiser Permanente patient, it just reminds me how much I detest and loathe managed care. Having had Kaiser medical insurance for a few years, I have to say they are great if you have, say, a cold or ear infection. But when it comes to the big important stuff? Let's just put it this way: I'm so happy that I had options when I was diagnosed with Multiple Myeloma because I do not trust them with my life. Not one tiny bit. Yuck. Their hospitals and medical offices are depressing, dark, old and dingy. The ER wait times are insane and unacceptable. And trying to find a parking spot is a nightmare. I digress. Back to my story...

For well over a year, Jim has been struggling with his health. Namely, breathing has become increasingly difficult and getting worse. This has gotten to the point where even getting out of his chair to go to the bathroom leaves him winded. He rarely goes anywhere outside his home and even having conversations is something he avoids. When we were there just last month, I did have a chance to talk to Jim at length but he struggled and gasped for air throughout. We talked a lot about how I was diagnosed, my symptoms, side effects, and how potentially, he had something like I have. He was getting ready for a bone marrow biopsy (ouch!), but they had ruled out lung cancer.

Then Julie called to tell me that they had finally gotten him in to see their top pulmonologist in LA. At that appointment, Jim was told he has mesothelioma and his time was limited and there was nothing he could do. We all cried, I know Julie and her family cry all the time, Jake (Julie's thirteen year old son) doesn't want to leave his side, and it's awful. They did a biopsy but that was just for formality's sake-- the doctor said that he was positive that it was mesothelioma but the biopsy results would enable him to see an oncologist for whatever care options were available to make him comfortable. That was last Friday.

I talked to Julie on Tuesday. She had still not heard back from Kaiser on results. I thought that was very odd-- if someone has late stage cancer, usually they read that report immediately and you're in an oncologist's office like yesterday already. I said, "Julie, what if he doesn't have mesothelioma or cancer at all?"

So Wednesday evening I got a call from Julie. I was with William and I think he must have heard my happy dance all the way downstairs. Turns out, Jim doesn't have any cancer anywhere and so now what? (Don't even get me started about how angry I was that the doctor gave Jim a diagnosis like that without knowing for sure. Asshole. In fact, for the rest of this posting, let's just call that doctor Dr. Asshole just because I feel like it.)

The next day, I talked to Julie. She had spoken with Dr. Asshole. He said that even though the biopsy and scans and blood work and everything else showed no cancer whatsoever, he was sure it was cancer anyway so he's going to stick with that diagnosis, there was nothing more he could do, call hospice to make him comfortable. Oh, and because there's no cancer in Jim that anyone can find, he can't see an oncologist because Kaiser requires that you have cancer in order to get that appointment. What the hell, Kaiser- you suck. Of course, that should come as no surprise considering Kaiser Permanente gets sued all the time.

Simply picking up the phone and finding different specialists to see Jim isn't an option because... he's a Kaiser patient and if you have Kaiser, you don't get to go out of network unless you're in a remote location and you're in the midst of an emergency, like cardiac arrest. And even then, you get to fight with Kaiser for months getting them to pay for even that.

Did I write already that I hate managed care? I hate cancer, I hate Kaiser, I hate managed care (in case you forgot how I feel), I hate that Jim is sick. I am angry right now. Ok, I'm taking deep yoga breaths. Calm. Peace.

And so the sage continues.

Friday, August 16, 2013

My radio show recap



Dear Readers,

I just finished up my radio interview and it was so fun! Talking to fellow cancer warriors is always uplifting, if you ask me. We are a courageous bunch bound together by something terrible but finding good.

I've been told I'll get a link with the recording of the interview. As soon as it's ready, I'll post it for you. In case you missed it, it replays tomorrow at 2PM on their website: http://www.klav1230am.com/. Or, if you're in the Las Vegas area, you can just tune right in from your radio!

All the best,

Lizzy Smilez

Thursday, August 15, 2013

Join me on the radio tomorrow!! (I am so excited!)



I am so excited to be invited as a guest on Cancer Nation Radio http://www.klav1230am.com/ tomorrow (Friday, Aug 16) at 10:00 AM Pacific. I will be discussing my battle with Multiple Myeloma, this blog, and whatever else comes up. I hope you join me. You can listen live right from your computer.

Look, they're already promoting me. Since this is my first invite of its type, I am deeply honored and, yes, I'm selflessly promoting me!

CANCER NATION RADIO@CancerNatRadio 26m
Join us tomorrow w guest who created a Blog about her journey in fighting myeloma cancer & more. 10am
If you miss the show, I'll give you the recap right here. Stay tuned!

DEFEAT CANCER!!!




To all my readers and supporters and, especially, my fellow cancer warriors: May cancer die a horrible, awful and decisive DEATH.

Tuesday, August 13, 2013

Summer is ending (sobbing)

The girls go back to school on Monday and I cannot believe the summer is over! It has whizzed by at warp speed, darnit. It seems like we've had no time to sleep in. That's my fault. I've kept us far too busy and now it's too late and here we go, back to structure and alarm clocks and homework and expectations. Still, we've managed to cram a few more notable things into our summer these past few weeks, like...

Meeting up with old friends & making new ones
I started my college career at BYU. It was not a good place for someone like me. I was (am) rebellious in nature and if someone tells me to do one thing, chances are I'll do the exact opposite. BYU was one rule after the next and, true to form, I had a great time breaking every single one of their rules-- from drinking to allowing boys in our home to wearing immodest clothes (like, gasp, tank tops and shorts that came above the knees), to using profanity. And then I, along with a few of my closest friends, got booted out of school for throwing a raging party in our house complete with an unconscious "guest" in the driveway, jungle juice in the bathtub, football players smoking pot in the upstairs bathrooms, and partiers peeing on the neighbor's lawn. One of my closest friends, Emmy, and I quickly transferred to the University of Utah and never looked back.

I had many great friends at BYU and reconnecting with them over the past few years has been great (thanks, FaceBook!). One such friend was Susan, a former roommate. I hadn't seen Susan since I was 22 years old, even though she lives just an hour from me. Emmy came to town from Denver and we went to Susan's for dinner.


This is a photo from our BYU days of Susan (far left), Emmy and me with 80's rocker big hair

Here we are-- 23 years later. Thank goodness that our hairstyles have changed

Our reunion was super fun and catching up, without having to talk about my health, was so nice. Susan has had a very interesting life since we lost touch. She was an opera major in college and after graduation, auditioned for the Met and was encouraged to try out for the role of Christine in Phantom of the Opera. She did and she made it! She was Christine for several years on Broadway. She had three children and they all moved back to Utah four years ago. How amazing is that?

We spent a lot of time talking about our Mormonism-- one of us is faithful, one not at all, and one a hybrid. I'll leave who believes what private and my faith in Mormonism is a blog post of another day.

While Emmy was here, we also spent time with an old friend of hers, Leslie. I knew Leslie a little back in college, but not really so much. She is one of the coolest people I have met in a long time. She owns two very successful cupcake shops in Salt Lake City (my dream job!), won Cupcake Wars when she was on it, and dresses in vintage early 1960's dresses (my favorite fashions). We had a great time sampling her cupcakes, eating dinner at her house one night, and going out to one of the best Asian restaurants I've ever tried another night. Yeah for me- I met a new friend!

Getting our hair done and supplies/clothes for school purchased
In preparation of school starting next week, Morgan got her hair colored and clipped, Siena got a very cute cut, and I got a color, scalp massage and style. I know-- I look really pretty here.




Men work in the yard?
Not long ago, I went to William's house and had an epiphany: There are some men who are not only willing to work at keeping up their homes, but actually take joy and satisfaction out of it.

This is William's house.
 

It sits on an acre and a half and is beautiful. Clearly he can afford gardeners. But he doesn't. He mows the lawn, clips the hedges, maintains the pool and fountains, picks up trash, plants flowers, and cleans himself. I have known all along that most men are not like my ex husband, Bob (thank God!). Still, this was a nice reminder of it. At least I'm not repeating mistakes!

An update on Julie's dad (sad news)
I talked to Julie last night and her dad is ailing quickly. Since learning he had mesothelioma, an untreatable cancer, he has gotten sicker by the day. He could pass away at any time. He is uncomfortable and watching him struggle is beyond heartbreaking for everyone. He is at peace and is prepared for whatever God has in store for him. Life is so unfair.

My sucky week of side effects
And the past week has been sucky in terms of side effects. I've said it a thousand times but here I go again: extreme fatigue, cognitive reasoning skills in the toilet, and I'm cranky. When I'm this tired, everything gets on my nerves. One day at a time. I know this will get better.

Siena is turning eight?!?



Siena and me in the orphanage



Siena today-- almost eight years old!

I'm off to plan Siena's eighth birthday party, which is just three weeks away. I can't believe my tiny little Russian girl is getting so big so fast. She wants a Princess Party at a salon where she and five of her friends can get their hair and nails done. She also wants me to bake her a Barbie cake. Tall orders, no?

Friday, August 9, 2013

Thank you! A BIG shoutout to my readers (I heart you)

When I first started blogging, it was just me and a handful of readers. Somehow, my readership has grown to over 3,000 and growing every day. Wow- I'm amazed, humbled, surprised and so grateful for the time you have taken to find me and read my story.

Just a week ago, I started Tweeting and my followers have grown from 0 to almost 500!

What's most awesome are the countless private emails I've received from my readers. You have no idea how much you mean to me and how much those words encourage me and give me tremendous support even during my roughest days.

From the bottom of my heart: THANK YOU!

God bless,
Lizzy Smilez

Thursday, August 8, 2013

cancer SUCKS



I am angry. My best friend Julie's dad was just diagnosed with mesothelioma. Based on his charts, he's probably had it for two years. Expected survival rate is about 18 months so he's already beaten the odds. Life expectancy from here on out is not good. He is in failing health. He has a hard time breathing. He hardly leaves the house because even getting up to go to the bathroom leaves him winded. Speaking is hard for him because it leaves him out of breath. Oxygen is of little to no relief. There is no relief. It is horrible.

As you can imagine, this is heartbreaking news. Jim is a great man. Interesting, funny, kind, generous and faithful. There are great men out there and Jim is, without a doubt, one of them.

Cancer SUCKS. It is horrible. Hearing the word "cancer" changes one forever in one second. Life will never be the same for us cancer warriors, nor will it ever be for our loved ones. Cancer is the personification of evil and to realize we have evil lurking right inside of our bodies is a very scary reality.

I've had two horrible fatigue days due to my dex-thalomide-velcade cocktail. I thought I'd skip it this week because Sunday (two days post injection) was a good day. But Monday and Tuesday were extreme. I realize that when I hit extreme fatigue days that I make really poor decisions. Monday was one of those days. I walked into Sephora with a friend. All I really wanted to do was go home and sleep but I was doing my best to fulfill my friendship duties. I walked out with a very large purchase that in hindsight was really dumb. But I wasn't thinking right. I couldn't. I'm not capable when I'm that fatigued.

Chemo fatigue is far different than simply being tired. Chemo fatigue is physical, emotional, and mental exhaustion to an unbelievable extreme. When I get it, my whole body buzzes and I have a hard time concentrating. An example: I pulled laundry out of the dryer and I stared at it for several minutes, unsure about what I should do next. One day I was getting ready for a doctor's appointment and I had to sit on my floor and think hard about what I was supposed to do to get dressed. I mean, down to "Ok, put on panties. Now bra. Yes, now pants. I need a top. Where is my top. Think. Oh, yes, closet. Look in closet." It was so hard. When I felt better, I lined up top-pant combos throughout my closet so next time it would be easier.

So here is my rant: Fuck you cancer. Fuck you cancer cells.

Tuesday, August 6, 2013

NO WIRE HANGERS!!! Mommy Dearest is right here



I try really hard to be the best mom EVER and, of course, I am. In my dreams anyway. And, thanks to my lovely maintenance cocktail of medications, I take Dex once per week. Dex is a steroid. Dex makes me a monster usually the day after I take it. (Side note here: When I was first diagnosed with Multiple Myeloma, I was taking Dex every day, 50 MG, as opposed to now I take 25 MG once per week. Holy hell, the side effects from that much Dex was horrid, and that's a vast understatement.)

Before I recognized what a monster Dex was making me, I thought it perfectly normal to want to chase down any driver who dared to cut me off. Or, if I dropped something, I wanted to put my fist through a wall. I had better sense to not do any of the above, but I wanted to very badly.

One day not long ago, I came home after running a few errands and discovered that my children hadn't cleaned their rooms! And, this is even worse, hadn't put their dishes in the dishwasher. I just about lost it.

I did my best not to scream. Having lived for five years with an alcoholic who screamed like no one can, screaming is not something I'm a big fan of. It makes the screamer look like a complete idiot and the screamer loses all credibility anyway, so what's the point. But I did nag and ground and (try) to give all kinds of guilt trips. It went something like this:

"You poor girls, what a shame that Mom wasn't here to clean up after you. While you're watching TV or getting ready to go to a friends' house, did you look at your mess and think I'd just come and clean it up?"

--and--

"Is putting your dishes away after I make you breakfast really that hard? Princess Morgan and Princess Siena, get off your ass and do something."

--and--

"That's it, you're both grounded for a week. I'm taking you nowhere-- not dance, or soccer, or to a movie-- nothing. And no TV, friends, snacks. That's it!"

And then Morgan told me that I was being a total bitch mom. Brutal honesty. My mother, God bless her, told me I was being harsh and their punishments didn't fit the crime.

A little math and thinking on my part and I realized it was Saturday, one day post Dex, and I could blame it all on the medications and I really needed to just stop it already.

That's not to say that I still don't feel angry at the dumbest things post Dex. But at least I am pretty dang good and talking myself out of a beating heart and seeing red. That's where my yoga breathing helps. I use a lot of lavender and citrus essential oils, and I drink Crio Brew instead of coffee-- because that helps calm and center me.

The girls have a new rule, though, and this one I'm not budging on: One day post Dex, they have to call me Mommy Dearest.

Saturday, August 3, 2013

Life's greatest pleasures are the little things

I watch my adorable nephew Chillin' Dylan find such indescribable joy in such small things. He's got it right. So I made my list of the small things in life that I actually find far more pleasurable that the big stuff.

Ugg slippers!

Buying Ugg slippers in fun tweed for $55 instead of the typical $120. I found them at Scheels. Check them out yourself (www.scheels.com)! Not only that, but Scheels is a very fun store so check them out anyway.

Surprising notes

Morgan recently left this note on my bed...

Dear Mom, Fair is far. I owe you this much money for iTunes! You keep it!! I love you so much! You are the best Mom in the whole wild world!!!! You are so nice and thank you for everything. Love you!! Thank you for adopting me! You have been so nice and tough but at the end of the day we come together!!! I heart you!! Thanks 4 everything!! Love u!! Love Morgan

Ok, my heart melted. It made my day-- make that week.

Being organized



It took some work but I can find everything in my room! Look at these drawers. I think they're beautiful.


Our own bedrooms




When I got sick, I had to pack up my children and move us to my parents' home. I had to have fulltime caregivers or no stem cell transplant for me. Thank goodness they had the space for us and we all have our own rooms. They are small but they are ours and they are cozy. Besides, I'd rather create memories than accumulate size and stuff that doesn't matter to me anyway.


Doterra essential oils (yum!!!) - www.doterra.com


My deliciously smelling (and highly effective) Doterra essential oils. Every day I use them... in my drinking water, in my baths (with Epsom salts), on my feet, on my spine, on my temples when I have a headache, under my tongue, on the back of my neck, on my scalp. I diffuse lavender at night-- you name it, I've got an oil for it. I think I smell of orange and peppermint all the time since I use those the most. If you've never used essential oils, check out doterra.com. I highly recommend them and if you have questions, send me a private email.


Unplanned excursions (www.snowbird.com)



At the last second, Morgan, Siena, William and I drove up to Snowbird and went to the top of the mountain on the tram. Up there, we breathed crisp mountain air, found beautiful mountain flowers, and built stone temples (or tried, anyway). I also bought Morgan her first-ever set of skis and boots. They were 80% off and a very nice set. Since she's not growing much anymore, they should last her many season. I also purchased Siena her first set of boots but they didn't have skis small enough so we'll keep looking. I hate renting skis and this year I plan to buy the girls annual ski passes so having their own will be so much more convenient.

Giving a massage (who knew? not me!)

I have found that I love giving a massage to someone I feel very comfortable and safe with. If I care very much about someone, massages are lovely and cathartic and peaceful. And when I use my essential oils, it's "aromatherapeutic" for me, too.

Slumber parties with my girls

Morgan, Siena and I love to get sleeping bags, pop in a movie, and fall asleep in the living room with the TV on.

Hugs from my mummy and going out for ice cream with my dad



What can I say? Spending time with my incredible parents is such a blessing. I'm a very lucky girl to have been raised by such selfless, kind, loving and stable parents. Everyone should be so fortunate.

Vising my grandparents at the cemetery and talking to them

My grandparents were incredible, fascinating, faithful and strong people. They were married for over 70 years. My grandfather passed away in late October 2007 and my grandmother passed away just two months later. They couldn't be apart and they were faithful and loving all the way to the end. What a great example they were to their family and everyone who knew them. I can only hope that my children and grandchildren will say the same about me. I hope so and I live every day with that intention.

Bikram Yoga

This is where I learn my breathing and calming techniques, meditation, and how to center and focus-- to live in the moment. After Bikram yoga, I feel like I've taken an internal shower and have physically, mentally and emotionally done a thorough detox. During yoga, I talk a lot to my body (DIE CANCER CELLS!!!!) and God (give me strength, guide me in all I do). 

My girls


Going anywhere with my girls-- whether it be shopping or a weekend trip to Moab, it doesn't matter. What's important is that we are together.

Sabatical

Not working so that I can focus on my health and get through my treatments and rest. It scares me the thought of going back to work. For one, I have long (and sometimes unpredictable) doctor office visits. Second, I never know when I'm going to have a major fatigue day. I have incredible chemo brain. And, lastly, I never know if I'll be popping pain killers and needing to take a nap. I'm lucky to be able to focus my energies where it belongs right now-- and work is not it.


HAIR!!!!!



Growing hair! And, better yet, being comfortable enough in my own skin to kind of like its length. Kelsey, my hair artist, no longer uses the mini flat iron on me. I've grown enough hair that we she now uses a regular-sized iron. Progress.


Every day I get older

I truly appreciate every day that I age. I used to tell everyone I was 38 now matter how many birthdays I had. That's because I was happiest on my 38th year (incidentally, that was a few months prior to meeting my alcoholic ex husband and my happiness vanished faster than I could say "I do"). These day, I thank God for the gift of life.


Getting to know (and cry with) other cancer warriors

I hate to brag but we cancer survivors are the strongest, coolest, kindest, most honest, and amazing people on Earth, no joke. It's a shame we are struggling with this terrible disease but here we are, and the world is a far better place because us Cancer Survivors in it. There is a special place in Hell reserved for anyone who belittles, makes fun of, or doesn't appreciate or empathize with our battles.


Writing my blog

Blogging and sharing my story and having a forum to develop my own voice.


Russian fairytales

While we were in St Petersburg, Russia this summer, I bought a book of Russian fairytales. I read one story to my daughters every few days. It's a fun bonding time and a way for them to connect to their roots. The stories are very clever and entertaining and teach good, powerful life lessons. It opens up some great discussions between us girls.


Zupa's (www.zupas.com)

tuscanwhitebean

Getting soup and sourdough bread at Zupa's. Delicious and healthy.


Sarah Smiles

Hearing Sarah Smiles on the radio by Hall and Oates. I forgot how much I loved that song and it brought back some great memories. I cranked it on the stereo and sang- loud.


Oatmeal Sundays

Eating Oatmeal with my Mom at McDonald's every Sunday afternoon. It's our time and I treasure it.


Picnics

Packing up a picnic and heading up to the American Fork canyon. I love spending time amongst such amazing beauty and serenity.


Having a peaceful home filled with love

Living in a home where I never fear that an alcoholic will scream at me for no apparent reason. Being surrounded by love, stability, laughter and joy is fantastic, and raising Morgan and Siena in that environment is nice.


No pain is-- no pain!

Having a pain-free day is not something I take for granted. This does not always happen and it's unpredictable. And when I am in pain, thank God for my friend Tramadol. It's a lifesaver.


Last minute art classes

Finding an art class at the last minute for Siena. She was so excited, she could hardly sleep the night prior. It's her passion.


Tuck-in time

Saying nightly prayers with the girls and chatting with them in private. Mommy-daughter time is precious and so important. I am honored that my girls still want this time with me. I must be doing something right.


Finding great skinny jeans that fit

Maybe I should move this one to the top of my list! When I find that perfect pair, I go back and buy many more. Last season, it was Old Navy Rock Star jeans (www.oldnavy.com). I purchased them in yellow, red, teal and three denim versions. This season is still TBD. Dang, I love buying clothes.


My readers (that's you!)

Every day is like Christmas for me when I discover new readers are finding me. I started writing this blog just for me and, some day, Morgan and Siena (my ex husband kept telling me that as soon as I died or when they got older he'd tell them what a horrible mother I was and how I took them away from him just because I was a drama queen) so they'd always have my version of what happened in case I was unable to set the record straight myself. But as it turns out, my blog has for whatever reason resonated with so many of you out there. I just got a Twitter email from one reader, Lidiya, who said she loves my blog and is reading it like a book. Wow, I can't think of many things more flattering than that.

To all my readers: thank you!!! You make my day. I continually pray for forgiveness, love and understanding. I hope you all find the same.