Monday, June 30, 2014

From www.myelomacrowd.org: Summer is here! Tips for staying healthy in the heat

Us myeloma warriors, whether we have just been diagnosed or are in remission, have to think about our health Every.Single.Day. Or, if we aren't, we should be. If we're still taking any number of drugs that leave us immune compromised (for me, that's Velcade and Thalidomide), we can get sick at the drop of a hat. I get a terrible cold every six weeks or more often, it seems. Or if we're in the midst of transplant, getting a sunburn could be deadly.
 
I wrote this article for www.myelomacrowd.org with some tips on staying healthy this summer. For more great info on all things related to myeloma, check out the web site. It has a plethora of information and it's easy to understand and navigate. Cheers!
Summer is here. Are there tips for staying healthy in the heat?

Summer is here. Are there tips for staying healthy in the heat?

by Lizzy Smith
  1. Air out your home! After a winter of closed doors and stagnant air, let fresh air inside. Open windows and doors. Clean and dust.
  2. Use sunscreen at all times. Many of the medication you are taking leave you very sun sensitive. Never leave home without applying sunscreen. Don’t forget about your ears, lips, and the tops of your feet!
  3. If you don’t have hair, make sure to wear a hat, turban or head protection. Burned scalps are painful and dangerous. Also, sunglasses are a very good idea.
  4. Always wear shoes. Chances are you’ve got some neuropathy and you may not feel things that you’re stepping on. Plus, it’s imperative to keep your body clean, including the bottoms of your feet. Keep flip flops, slippers or socks with you at all times.
  5. Practice good hygiene always. Wash your hands often and keep them away from your mouth, eyes, and ears.
  6. Be very weary of public pools and hot tubs. They are a breeding ground for germs. In fact, you may want to consider avoiding them completely. Discuss with your doctor.
  7. Get plenty of rest. Our bodies heal and repair while we are sleeping so make sure you’re getting adequate slumber.
  8. Get fresh air and move! As much as possible, exercise. Many doctors suggest at least 30 minutes a day. Try to take a walk outdoors (maybe in early morning or evening when it’s not as hot and the sun not as strong), work in the yard– anything that gets your heart rate up. Plus, fresh vitamin D is good. Don’t forget to wear good shoes, a hat, sunglasses and sunscreen!
  9. Eat healthy. Fresh fruits and veggies (if you’re not neutropenic!) are great options and many have incredible anti-cancer benefits. If you are neutropenic, make sure you understand your dietary restrictions before eating anything.
  10. Have fun! If possible, take a vacation, whether it be big or small. We all need to have healthy distractions from doctor appointments, medications, and dietary restrictions. Get lost in a great book, watch a good movie, or explore a new part of town.

For the full article on the site, click here.

Sunday, June 29, 2014

After chemo, my new hair looks like...

Before chemo and myeloma, I had straight hair. Not a lick of curl in it. But now, it is very curly.



I was at my infusion appointment yesterday getting my Velcade injection and took this selfie. This is my hair in its natural form post chemo. It is curly and I can straight iron it. But if I wash and semi-dry and go natural, here it is. Before chemo, it was totally straight. Learning to deal with curly hair has been quite a process but I'm far more comfy with it now. Before my trip to Europe and going curly, I straight ironed it most of the time. I fretted over it. But now I love it. When I had short hair and pitched the wig, my hair stylist, Kelsie, had to wash and style my hair twice a week. When it got a bit longer and I went with extensions, Kelsie still needed to style my hair twice a week. Now I see her just once a week. Progress!

WIG!!!
Very short hair with lots of blow drying and straight ironing required.


Hair extensions. This time, I took a curling iron and curled my hair. Typically, it was straightened by Kelsie, the best hair stylist ever.

Learning to be comfy in my own skin is still a process but I love the journey.

It's hard to believe that 14 months ago I was pitching my wig for the first time ever. And just 18 months ago, I barely had peach fuzz on my head. It's grown back fast and healthy and I'm grateful for hair. I'm grateful for life. Every day is a gift.
Long straight hair pre getting myeloma, undergoing treatment that included high dose chemo (melphalin), going bald as a Q-tip (twice!), wearing wigs, and then having my hair grow back.

Saturday, June 28, 2014

Our Big Trip in photos

PhotoOn May 29, we boarded a flight for Venice, Italy. The girls missed their last two days of school. The second to last day of school was a party for Siena and yearbook signing for Morgan. They were a little bummed but not that much. The last day of school lasts 90 minutes and very few student go at all. Last year, my kids didn't.  The flight was long and it sucked. Thanks, Delta Airlines, for nickel and diming us to death. I suppose that paying $1,850 per ticket wasn't enough because we still had to pay from $1 to $8 to watch a movie or play a game from Salt Lake City to JFK. Our leg room was non existent, the food not edible, and for an extra $10 per passenger, we could actually access WiFi. The flight from NYC to Venice wasn't any better except we got free movies.

PhotoWe arrived in Venice and hauled our luggage onto a boat bound for the center of Venice, which was where our hotel was located. It took over an hour before we reached our stop. The ride was really cool because we got a good bird's eye view of Venice. It also made us all very sleepy.







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We got off of our stop and walked to our hotel. It wasn't hard to find at all and it was so dang cute, quaint, pretty and cozy. Best yet, our hotel was centrally located just a few minute's walk from St. Mark's Square. It was two small bedrooms with a bathroom (it had a bath, and I took a very long one after everyone went to bed. I felt so dirty and grimy!). This was the view of from our hotel bedroom. To take this photo, I opened up wooden blinds to take in the fresh air, sounds of church bells, and the soft lull of diners eating in cute cafes. We allowed ourselves a two hour nap before waking up to go sites seeing. It was fun to be awaked by church bells ringing.


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We fell in love with Venice. The girls loved feeding the birds at St. Marks Square.










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We ate delicious pizza, pasta and salad at an adorable restaurant outside our hotel. It turned out to cost us about $70 US. Ouch. Venice is not cheap!









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We explored a lot by foot. My poor feet were really sore after it all because I wore flip flops, not the best choice. We bought stuff-- magnets, sweatshirts, scarves, and a mask. Great shopping, everything is made in Italy, not China, imagine that.

The next morning, we ate breakfast, did a lot more walking and site seeing (the weather was hot and beautifully perfect), packed up and took another boat to our cruise ship terminal. We sailed on Norwegian, which was a very solid cruise line to travel. Not fancy, but good. We actually took this same cruise line last summer when we flew to Paris, then Copenhagen and went to Stockholm, Helsinki, Mecklenburg and Travemunde (Germany), Talin (Estonia), and St Peterburg (Russia) for two days.
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First stop was Dubrovnik, Croatia. It was stunningly beautiful. Old town is surrounded by old fortress walls dating back to the Roman era. For 20-Euro each, we climbed the walls and walked the perimeter. Amazing views, even more amazing exercise. It took us nearly three hours to walk it!







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Beautiful red roof tops and views of the ocean.


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Lots of steps to climb. Lots and lots and lots of steps to climb.

And photo ops with the very nice locals.

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A day at sea for R&R and then it was Athens. We saw the Acropolis and the Parthenon. We got some rain but that didn't dampen our spirits. Athens is a lot like Tijuana. Sprawling and dirty. But who cares when you get to see this kind of stuff?

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And then it was off to Kusudasi, Turkey with our tour heading to Ephesus. Oh my gosh-- visiting sites from the Bible was just so cool that there are no words. It was one of the most amazing places I've ever been. (Side note: Turkish cuisine is my favorite in all the world. Olives, hummus, figs, cheese... oh my!)

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Next stop was Split, Croatia, a place I want to live. It was like San Diego but more beautiful, historic, and, it seems, more outdoor things to do, like river rafting, snorkeling, zip lining, and visiting churches and sites from the Roman era. Me in a Vespa, a fit & flair dress, and a cappuccino in an outdoor café? Yes, please!
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Another day at sea and the cruise was over. William flew to Atlanta, the girls and I hooked up with my parents in Venice and we somehow made it to the train station with all of our luggage. That was a nightmare. But we got on the train bound for Milan. When we got there, we split up and the girls and I checked into our hotel room, which was just a couple blocks from the station, centrally located. We indulged in more delicious pasta, pizza and salad, walked the city, and shopped. Oh my gosh, we discovered that the Italians dress so dreamily. We sat in a café and watched how they were dressed. We got inspired. So we shopped and we shopped some more. Oh my gosh we couldn't stop. We needed to dress like an Italian. "When in Rome" right? We bought tops, skirts, sundresses, magnets, T-shirts and shoes. Oh, yes, and we did some site seeing. And we almost got swindled, which is totally expected in Milan. They only got 10 Euro from me but we got some great photos so maybe it was worth it.

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We hooked up with our tour group and took a motor coach to Sirmione. This is exactly what a Mediterranean city should look like. Oh my gosh it was beautiful and historic and perfect. I fell in love. Yes, I could definitely live in several Italian cities and this is one of them. We stayed two days at a very cool hotel. Our unit had two full bedrooms and a living room, a beautiful pool, and we at lots of amazing Italian food (and gelato). We had a lot of pool and rest time. One night, I slept 13 solid hours and took a nap out at the pool. Restful, peaceful and relaxing time is important. Lake Garda is dreamy, that's all I can say.

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Then we went to Verona, home of the story of Romeo and Juliet. We walked and walked and caught in all the historic sites. And we ate. And we melted. It was a very hot day!

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And then it was Lake Como. There's a reason George Clooney bought a home in one of the world's most beautiful places. I saw where Mussolini was killed, we visited amazing castles and gardens, Bellagio, Chernobia, Como, and several other beautiful towns along the lake. We stayed in a beautiful hotel on the lake that was once a mansion. We had fun mommy-daughter bonding time. Siena loved to do my hair when it was time to dress up for dinner (yes, we dressed up every night!). We swam, we slept. Morgan read a lot!
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I stopped wearing makeup, except at dinner, and made peace with my curly locks. That was a Big Huge Thing for me. Siena discovered an obsession for strawberry gelato. She asked for it many times a day. What's a mom to do but give in?
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We spent a day in the staggeringly expensive and beautiful Lugano, Switzerland. We gave in... we ate at McDonalds. For a kids meal, two chicken sandwiches, one soda, and one large order of fries, I paid $35 US. I bought shoes for Siena and me, a T-shirt for Siena, and three magnets. Morgan wanted a sweatshirt. The cheapest one we found was $90 US. She didn't get it.
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I wore my kids out. They were very tired.
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We spent two days at Lake Maggiore. Our hotel was gorgeous. We saw gardens and castles. And we shopped! We are obsessed with all things Italian, especially the clothes, shoes, and food!
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My 14 year old put her iPhone down long enough to READ!!!!
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I found a restaurant just like the one I'd love to open. It sat maybe 10 people total. I'd love to have a tiny restaurant and serve what ever I wanted to that day and that's what you get. Maybe have set eating times, all guests sit together and eat what I prepared. Fun!
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Siena and I went swimming in the coolest indoor swimming pool I have ever seen. Very spa, zen, and trippy. We were there for hours.
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We had fun dressing for dinner, getting to know the most interesting and well traveled people ever, and celebrating Father's Day with the most amazing dad on the planet in the most beautiful place on the planet. A perfect combo, no?
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And I dreamt of buying this fixer-upper and moving into it and living on Lake Como's Bellagio fulltime.
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Alas I didn't buy the house. We got on a plane and came home. Another flight on AWFUL Delta Airlines. And when we arrived at JFK? After three weeks of eating amazing food (minus the McDonald's stop in Switzerland), what was our ONLY option for food? Wendy's. Yuck!!!!! And we wonder why we Americans are the most obese and unhealthy people in the entire developed world. I HATE THE WAY WE EAT. But it was good to get home simply because I was tired of living out of a suitcase. We hauled way too much stuff across five countries, three weeks, and nine hotels. And I needed to do laundry. I was down to my last clean pair of panties! Great packing in that area at least for me.
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But seriously, I'm ready to go back to Italy. I really do want to live there. After my horrific cold got better, I felt the healthiest I've felt in years. My back and ribcage never hurt. I rested. I never felt fuzzy or buzzy. I was tired, yes, but fatigue? No. Taking that Dex-Velcade break really helped. I didn't feel so chemo-brained. I remembered things. I didn't search for words that wouldn't come out of my mouth. I didn't feel or sound stupid. I felt energetic. I felt emotionally and physically healthy. I missed William like crazy but was so very happy to see him at the airport! I loved traveling with my parents and creating memories. I loved showing my daughters (once again) that the world is a big place and that there are lots of different ways to live. Morgan has started dressing "softer." The Italian women really inspired her for a different look. They inspired me too. I'm obsessed with sundresses and skirta.

I heart Italy. And Turkey. And Croatia. Croatia is a FABULOUS find. Can we somehow rent an apartment there next summer and stay a few months? We're talking about it. Who knows? I'd love to!