Saturday, June 29, 2013

My own private Idaho

Therapeutic waters in Lava Hot Springs, Idaho

Kay and I took the girls to Lava Hot Springs, Idaho. They have very therapeutic pools and baths from natural springs under the ground. Kay, who is in a wheelchair after losing her leg, was able to soak in the pools, the girls swam and did the waterslides, and I laid in the shade and rested. It was nice.

R&R and vitamin D in Idaho

The last time I was in Lava Hot Springs was in January. It was a very different experience. The town was nearly empty, we stayed in an old historic B&B, we got our own private mineral bath, we got massages and dined on yummy food. In the summer, it's lots of kids and families, those seeking alternative treatments, floating down the river, and lots of mountain bikers. Parts of Idaho are beautiful and it's not too far from Yellowstone, which is a big huge bonus. I can't say I'd ever want to live in Idaho but visiting is cool. I love exploring new places and I love taking the girls with me.

Later, we stumbled upon a snake on the side of the street. Snakes are one of my biggest fears (besides alcoholics and cancer) and seeing a small snake was both scary and oddly exciting. I'm not sure if that was an omen or not! I took lots of photos and Siena and I clung to each other while Kay and Morgan laughed at us. It was fun girl-bonding time.

We saw a SNAKE!!

Morgan and Siena were angels. Morgan helped get Kay's wheelchair in and out of the car and pushed her everywhere we went. Siena was our little Sherpa. I am really proud of these girls. They are growing up to be amazing people.

Because of a variety of reasons, I got my weekly Velcade injection three days early-- which meant I had just four days between injections. That has equaled side effects compounded to the max. Yesterday when I was driving, I nearly had to pull over and find the nearest hotel. I felt fuzzy, almost "drunk". I didn't think it was safe to be driving. I had delayed motor skills. The only way for those side effects to subside is to lie down, something I can't really do on a freeway. Fatigue doesn't adequately describe that feeling. Thank goodness I was able to get us safely to our destination. Today I feel much better, though I am weak.

One of the patients I am treated with, Steve, told me that maintenance therapy has a cumulative effect on our bodies, so as the year progresses, it can get harder and harder. Overall, I can't complain. Most days, I feel quite well. So if I have a day or two a week, or sometimes every few weeks, well, it can be a whole lot worse.


Our cat, Princess!

So ending on a happy note... Over Mother's Day weekend, our beloved cat, Princess, disappeared. She is the friendliest, sweetest, most affectionate cat with a Big Huge personality and we adore her. And, just like that, no Princess. We were heartbroken and worried because Princess is a strictly indoor cat and she has no front claws. We adopted her that way, as I would never declaw a cat. After two weeks, we threw everything away-- the litter box, litter, food, water/food dishes, her cat bed. Last Sunday she showed up at our back door- six weeks after she had gone missing! We were ecstatic, screaming for joy. She was filthy, emaciated and severely dehydrated. She couldn't walk straight and seemed very unaware of her surroundings. We rushed her to the pet ER and they gave her antibiotics and fluids. Long story short, here we are almost a week later and Princess is doing great! Her personality is back, she's eating and drinking normally, and she's gained a few pounds. The first two nights she was home, I thought I'd wake up in the morning and she'd be dead. That sweet defenseless cat somehow figured out how to keep herself alive and fend for herself for six weeks in Lord knows where doing Lord knows what. She went from 13 pounds to just over six but she's alive and well. She's a tough thing after all.

Wednesday, June 26, 2013

Grandma Kay is here!

Julie, Shane and me over Thanksgiving weekend

Julie and me back in college when we first met

Julie is my best friend. We met in college and she's like a sister to me. Really, no one knows me better than Julie and her husband, Shane. Better friends simply don't exist. I am also lucky that Julie's family is like my own. In fact, Julie and Shane will be Morgan and Siena's guardians should something happen to me. They agreed to it, no questions asked. I know should it come to that, they'll be in great care. They treat the girls just like they treat their own children. We are so lucky and blessed.

Today, Julie's mom, Kay, arrived. For the next week, I get one-on-one time with her. She's a wonderful, kind, loving woman. My girls call her Grandma Kay. I'm very much looking forward to our time together.

Grandma Kay with her 97 year old aunt and cousin. That's no typo-- she really is 97 years old and she looks and sounds amazing. Sharp as a tack and incredibly coherent. I'm so impressed.

It seems that throughout my cancer battle, God puts people in my path when I need them most.

One night I was lying in bed and I got a text from a high school friend of mine, Bernie. I hadn't heard from him in some 20 years but there he was. "How are you, Liz? I've been thinking about you." Wow.

Just before my diagnosis, my friend, Linda, came into my life. We talked a lot about her cancer battle and what she learned about alternative treatments. How uncanny it was that just weeks later, I was leaning on her for knowledge and support. Random? Coincidence? I think not.

And Russ. Handsome, smart, engaging, Russ, who one evening sent me an email that if I ever needed anything. he was there for me.

I could go on and on and on but I'll leave with Todd. Todd is the one who got away. Movie star handsome, smart and educated, intellectually curious, witty... The guy who walks into a room and people stop to look. I took him to a few of my work functions when I was at HSBC and my coworkers literally swooned over him. Well, so did I. When he was around, my world literally stopped and nothing seemed to matter, just us. Throughout my horrible marriage, I kept in touch with Todd and I knew early on that I had made a huge mistake and I ended up with the wrong man. Anyhow, when I left San Diego and was moving to Utah, out of the blue I got an email from Todd. I hadn't heard from him in months but there he was. I gave him the update on what was happening in my life. Long story short, he said he'd come to Utah and help me with my injections. It was cute and funny. He told me that one of his greatest regrets was letting me go. Not that anything could happen-- hey I was sick and many hours away from him. But it was so nice to hear and came exactly when I needed it most.

God puts amazing people in my path exactly when I need them. And right now, it's Grandma Kay.

Tuesday, June 25, 2013

It's my pitty party

The first person I ever spoke with about cancer treatments was a work friend of mine, Nadine. Nadine was a very strong woman about 45 years old. She was a biker and hiker, incredibly fit and physically strong, and took very good care of herself. And then she was diagnosed with breast cancer and underwent treatment. One day, she came to visit me. She had three chemo treatments left. As we talked about the difficulty of chemo, she started sobbing. "I don't know how I can get through another treatment," she said. I cried with her as she described how awful the treatments made her feel. If Nadine had a hard time handling chemo, it really must be more horrible than I could possibly fathom.

A few years later, I learned that my good friend, Lisa, had been diagnosed with stage IV pancreatic cancer that had spread into her kidneys and stomach. She was 37 years old and had four young children and an ex husband who was a drug addict and alcoholic and unfit to care for the children. She fought her cancer as long as she could but passed away about eight months after diagnosis.

A few months after I was diagnosed, my friend, Mandy, was diagnosed with stage III colon cancer that had spread to her liver. She is now undergoing chemo indefinitely. She is a year younger than I am. She had a colostomy last year. She has two young daughters and, at least, a decent husband who is standing by her side.

My friend, Linda (who, by the way, used to work for my ex husband, Bob) was diagnosed with stage III ovarian cancer. She treated it with chemo and radiation and now is fighting to stay in remission with alternative therapies. She called me on the phone many months ago to tell me that my relationship with Bob made me sick-- that an abusive relationship can physically poison the victim. Yes, I know. Sick relationships equal sick physical bodies. It's hard to come to terms with that. Really hard.

My ex fiancé, Keith, has a daughter who was recently diagnosed with ovarian cancer and, just months later, her husband was diagnosed with lymphoma.

I was getting my weekly labs and velcade injections and I saw a woman who looked much like I did a year ago. She had no hair, no eyelashes and no eyebrows and she looked very sick. Last year, I laid in that exact same bed, puking my guts out because I was so ill. I had recently had a pick line installed in my jugular vein in my neck that ended up staying there for a week. It was the most uncomfortable thing one can imagine. I took a few pain killers one night and had a horrible reaction to it. Add to that, I had no immune system and was taking all kinds of chemo into my veins. Bad combination. I wanted to sit next to that woman and hug her and cry with her. I so felt her pain.

As I was leaving that same appointment, there was a woman waiting at radiation. She was sitting in a wheel chair, looking so thin and frail, wearing a beanie cap on her head, huddled underneath a blanket.

I was so angry and sad and heartbroken when I left. Cancer sucks. It is evil and hard and horrible.

I was very fortunate to have some really good weeks where I felt, all things considered, pretty good. But this past week, velcade/dex has kicked my ass. I have experienced extreme fatigue. My heart races and my body just shuts down. When I rest, it's not like I sleep-- it's more of a slip into temporary unconsciousness. My ribs have hurt. Yesterday, I had a relatively pain free day. Except I think they hurt when I went to bed. Or was that a dream? I'm not quite sure. Yesterday, I was driving to the AF hospital to pick up a 24-hour collection kit and as I got near, I couldn't remember where I was going or why. I drove around for several minutes trying to collect my thoughts before it came to me. Chemo brain is definitely raging. Part of the reason I had great weeks is that I got a week off from treatments. What a difference that made! Of course, now that I am back in treatment, all the nasty side effects are back. It's like the medicines are saying to me, "Ha! You think you can get away without us? Think again! Now we're going to make you feel doubly awful. Hahahaha."

Abby, one of my PAs, said that many people take a break during their year of maintenance because they get sick from something else. And while they're taking that break from treatments, they feel better than ever. It sucks but life saving treatments make you feel like hell. Or at least, they make me feel like hell.

When my friend, Lisa, was passing away, we talked. She said that she was done with treatments, that she was exhausted and she could go no farther. I didn't understand it then. I do now. I'm nowhere near that, trust me! But I get it when people just get tired.

My life has changed forever. I don't see the world the same way. I would love to go back to the innocence I had when it came to my health. I felt healthy. I took care of myself. I just had no idea how hard fighting was. I miss those days of not thinking about blood tests, markers, needles, treatments, calendars, oncologists, and specialty pharmacies. My life will never be the same again. In some ways, that's good. I'm a much better person. This is a very hard road to travel but here I am and I will make the most of it. Today I have a little pitty party. Tomorrow will be better.

Sunday, June 23, 2013

All is well, all is well

Morgan and Siena with their friend, Brooke, after their dance performance Saturday night.

One of the many things I love about Utah is its focus on the arts. Nowhere have I seen so many dance and music studios, musicals, plays, recitals, symphonies, musical performances, dance reviews... you name it. This is something that dates back to the early pioneers and Brigham Young. Brigham saw huge value in the arts and one of the first things he established once the pioneers got settled in the Salt Lake Valley was a performing arts center. It was a vibrant and exciting part of the burgeoning community.

I hear that Utah sells more pianos and harps than anywhere else in the country. I think every other person in my neighborhood plays the piano. I love it. Siena will start piano lessons in the fall and Morgan has been taking lessons since we moved here.

Anyhow, Morgan and Siena are heavily involved in dance and this weekend was spent in multiple dance recitals. I have to say, I was beyond impress. The skill level of the dancers, the choreography, the music, the costumes, and the overall quality of the recital was astounding. This year's theme was "across America" and it took place at the Covey Center for Performing Arts. In the recital, many states were featured with a song that represented that state and a dance that went along with it.

For Utah, the music started out with the song "Come, come ye saints." While I have many issues with the Mormon church, I am so proud of my ancestors who walked across the plains and settled here in Utah. They were strong, amazing people. If I think my cancer fight is hard, there journey was harder. The performance for Utah left me in tears.

Morgan and Siena danced beautifully. They were both in three dances each and I was so proud of them. Due to our vacation schedule, they missed three weeks of dance classes and we were wondering if they'd be able to participate at all. Not only did they participate, but they shined.

It has been a very hard week for me physically. I had several great weeks with my health but this week wasn't one of them. For whatever reason, I have had extreme fatigue. Like the kind of fatigue where my body shuts down and I cannot move anymore. One afternoon, I was driving the girls and their friends to a family fun park to drop them off. I was at a stop light and I didn't know how I would find the energy to make it home. I have also had debilitating flank pain. Tramadol was my best friend and I was taking one every few hours. And chemo brain was in rare form. My short term memory scares me sometimes. I'll post more on all this later. I will survive this but, dang, fighting cancer and undergoing treatments is so incredibly hard-- physically, mentally and emotionally. With my fight, I never know when I'll have a bad day. It comes without warning and without reason. And the doctor appointments! I love my medical team but, really, it gets so tiring.

Back to the positives...

Life takes on quite a new meaning when one has come close to death. My entire life focus now is on being a good person, making sure my life has meaning, setting a good example for my children, living in the moment, and doing everything I can to meet God on the other side and be able to say, "I did my best." Every one of us has a purpose to fulfill here on Earth. I believe that my purpose was to find my girls in Russia and bring them to America and be their mom. I will go to my grave knowing that I did what I was supposed to do. I thank God every day for trusting me with these girls and I pray constantly that I can parent them and guide them to be amazing adults who will make the world a better place.

The song "Come, Come Ye Saints" was exactly what I needed to hear last night. It gave me a huge jolt of encouragement. "All is well, all is well." This will be my new theme. Whenever I'm scared or tired or angry or feeling demoralized, I'll keep those words and this song in mind. And so I will leave it with you:

Come, come, ye saints, no toil nor labor fear;
But with joy wend your way.
Though hard to you this journey may appear,
Grace shall be as your day.
Tis better far for us to strive
Our useless cares from us to drive;
Do this, and joy your hearts will swell -
All is well! All is well!
Why should we mourn or think our lot is hard?
'Tis not so; all is right.
Why should we think to earn a great reward
If we now shun the fight?
Gird up your loins; fresh courage take.
Our God will never us forsake;
And soon we'll have this tale to tell-
All is well! All is well!
We'll find the place which God for us prepared,
Far away, in the West,
Where none shall come to hurt or make afraid;
There the saints, will be blessed.
We'll make the air, with music ring,
Shout praises to our God and King;
Above the rest these words we'll tell -
All is well! All is well!
And should we die before our journey's through,
Happy day! All is well!
We then are free from toil and sorrow, too;
With the just we shall dwell!
But if our lives are spared again
To see the Saints their rest obtain,
Oh, how we'll make this chorus swell-
All is well! All is well!

Sunday, June 16, 2013

Happy father's day to the best dad ever!

My dad is truly a great man and father. He learned well from his dad, my grandfather, who was also a great man. I am so lucky to have grown up around great men. My dad...
  • Taught me right from wrong. Even when I made really bad choices, I knew what I was doing was wrong and that helped me steer myself onto something better.
  • He never ever disparaged my mother in any way- not ever.
  • He put his family first without exception.
  • He was devoted to his children, also without exception. He had fun with us, but he also parented us. We had rules and structure and consequences.
  • He never turned a blind eye to us children when we needed something, including a good lecture.
  • He put the time and energy required into raising children and keeping his family together.
When I was sick and being diagnnosed with Multiple Myeloma, my mom and dad dropped everything and rushed to San Diego. Not only were they with me when I officially received my diagnosis, but they rescued me from a terribly abusive marriage. Once they realized the extent of the abuse I was suffering, they helped me put an end to it. For that, I will forever be grateful.

Father's Day is about recognizing the great fathers in our lives and this day was truly made for my dad. I love him more than life itself and I am so blessed to have a dad like him.

I love you, Pops! Thank you for all you have done for me and for my two daughters. You are an inspiration to everyone who knows you. Every good part of me is because of you.

Tuesday, June 11, 2013

View from a boat

Our trip thus far has been fantastic and, overall, my health as held up. I did get another major cold and bladder infection. I had to go to the ship's medical doctor and get on antibiotics. It cleared my chest cold right up. Not sure if the bladder infection is cleared, though. I'll find out on Friday when I have my weekly labs visit. The joys of traveling when one has cancer.

But let's move on to the good stuff. In case you missed it, I brought the girls on a cruise to Northern Europe. On our way to Copenhagen, we had a brief stopover in Paris, then two days in Copenhagen, then the ship stopped in St Petersburg (Russia), Tallin (Estonia), Warwamunde (Germany), Helsinki (Finland), and Stockholm (Sweden). It's been fabulous. I'm actually still on the ship paying $20 to use the Internet for 20 minutes. Of the ports, my favorites have been:

1) St Petersburg. This is my second trip here and this city is magical. There is so much history and beauty that it is absolutely stunning. I love Catherine the Great. She is my hero (along with Elizabeth I and Coco Chanel). Seeing her palace and the Amber Room, as well as the amazing art collection she purchased during her reign that now sits in the Hermitage museum was awesome. Peter the Great was an incredible ruler. Crazy, but way ahead of his time. I love seeing the fruits of his labor. But I will say this: The reasons for the Bolshevic Revolution are obvious. The tsars lived well beyond any other royalty I've ever seen.

2) Tallin: What a jewel. Beautiful and incredibly historic. Please, I hope I can come back and stay a long time.

3) Stockholm: Gorgeous, beautiful, historic.

Every place has been nice but those are tops. I've met the most fascinating people on this cruise. Well traveled, highly educated, and interesting. It inspires me to learn more and travel more.

The girls have been incredible troopers. They've rarely complained. I think they've learned a lot, too. And they're having a ton of fun on the ship, meeting kids their age and, well, being kids.

Soon we will be heading home. It's a long flight but so well worth it. I am so grateful for every single day I have of life. Celebrating each moment is something I cherish. I haven't always, and I suppose this is one of the good things I've gotten out of this terrible, horrible disease. Fighting it is the most awful thing one can imagine but if there are positives, this is one of them.

Sunday, June 2, 2013

From Copenhagen, with love

About six months ago, I was at clinic for another one of my countless appointments when I lamented to my PA Abby that I couldn't even fathom the luxury of getting on a plane for a real vacation. At the time, something like that seemed so... well, ordinary, and there was nothing ordinary about my life anymore.

'You want to fly?' she asked. 'You can go. But you can't miss more than two velcade injections so plan carefully and remember to pay attention to how you feel.'

I kid you not, I almost started crying. Despite still fighting MM, I could do something I love the most and that was see the world.

And today we are in Copenhagen, Denmark! We arrived last night after a short visit to Paris. My girls wanted to see the Eiffel Tower so dang badly and so we did. Having spent a week in Paris, I can tell you, the Eiffel Tower is the least exciting and, perhaps, the most crowded and annoying part of the entire city. But we did it anyway. And we visited Sacre Couer (I think I spelled that wrong) and Notre Dame. And that is all we had time to see. Better than nothing.

And then we went back to the airport, hopped on another plane and arrived in Copenhagen last night. Today, while we could be exploring this lovely city in Northern Europe, we are resting up.

So while this trip isn't my typical crazy run around trip like I've done in the past, it is nonetheless an incredibly nice change of pace. I have huge limitations because of the medications I am on and the exhaustion I encounter. I am still immune compromised and need to be careful with every morsel of food I put in my mouth. But a cruise is exactly what I can do. I can see things at my own pace and if I'm having a particularly tough day, I don't have to leave my cabin. Yes, this is progress. (And, by the way, I have no intentions of staying in my cabin. Our ports of call include St Petersburg, Tallin Estonia, Berlin, Stockholm and Helsinki. I have visited all of them except Tallin and Berlin and I cannot wait to see every single one.

Travel is a huge part of my life. It always has been, it always will be. Traveling helps me keep life in perspective. It gives me a huge view of the world. It teaches me things I can never learn out of a book. Knowledge and experience and continual learning is so important to me and I hope to pass that along to my children. I never really knew how important it was until I lived with my ex husband for five years. He was the first guy I had dated in my entire life who, well, could not hold an intellectual conversation if his life depended on it. In fact, when he tried, it was painful to hear because it became so apparent that he was not very smart. Once I realized that, my quest to instill intellectual curiousity in my girls became ever more important.

And so with that, I think I'll go wake up the girls. Copenhagen is calling.