Judgmental Joys

This morning I decided to read a thread from one of the online lung cancer support groups. It resonated deeply with me as one member struggled with speaking at her church because the pastor wanted her to share the surprise lessons and joys she’s found through her battle with cancer. Her response, “There is no joy from cancer.” 

While I’ve learned many lessons about myself and life through my journey with cancer, I agree there is no joy from cancer.

In the thread, other lung cancer warriors lamented that the world doesn’t understand us and encouraged the one asked to speak at her church to enlighten them. People see us enjoying life and think we have found joy in cancer, and don’t give a second thought of how much energy, soul-searching and prayer it took to get to that moment.

Almost all of us in the group never smoked. The drugs and chemo that often fight our cancer usually don’t lead to baldness. We don’t have the face that the media and entertainment portray as Stage IV cancer patients—especially lung cancer.

When I tell people I have lung cancer, I can almost read it in their eyes, “You shouldn’t have smoked.” 

They think I’m not that sick because the drugs and inability to exercise have led to a 50-pound weight gain. I don’t have that gaunt, pail look the media often shows of cancer. While I look at my hair and almost cry some days because so much of it is gone (and I did lose at least half of the hair I used to have), I had so much hair that losing half really brought my hair to a normal level. But I try not to look in the mirror because I don’t recognize the person I see in it.

When I breathe heavily and sweat like I just came out of a Cycle class after walking up one flight of stairs, I usually get the look of, “You should lose weight. Eat healthy and start exercising then a flight of stairs won’t kill you.”

Then there’s the reality I always have in my mind when I’m making decisions, “My cancer is currently incurable.” Treatment for me is not to cure my cancer; it’s to keep me alive. I live every day with the knowledge that my body is working against me and no day is guaranteed. I take solace in the fact that is true for everyone, and I read it in the news when unexpected tragedies lead to the loss of life—no one has tomorrow guaranteed. But for most of us it is a fleeting thought that doesn’t hang over them every day.

Cancer is now as much a part of my body as the liver it’s destroying. 

The media often talks about remission and beating cancer, and everyone around me thinks because I’m living life as full as I can that I’m beating cancer. I often hear, “You look great! Happy you’re doing better.” Meanwhile, inside my body the tumors are growing and the chemo is no longer working to keep the cancer cells in check. 

I hear from well-meaning friends, if you only drink alkaline water or eat a ton of cucumbers or down a combination of tumeric and apple vinegar daily you’ll be cured. Then if I don’t take their advice, I feel they’re offended and no longer want to hear about my cancer because they told me what to do. I know the advice comes from a place of well-meaning, but it often gets processed as more judgment.

I’m grateful that on the outside I look like most everyone else walking the street and most of my co-workers have no idea why I disappear for a few days every month. They say, “How did you like your vacation, or are you refreshed from your time off?” Usually I’m exhausted, jet-lagged, and my body has radioactive chemicals flowing through it wreaking havoc on my digestive system. While I have gained a lot of weight, I can rarely finish a plate of food. But it’s too long of a conversation for an elevator ride, and they wonder why I’m not more appreciative of having so much “time off.” 

No, I’m not looking for sympathy because I believe everyone has their battles. But as I read the thread of comments from my lung cancer group, I realized that the judgment I feel is common with other patients and we want the world to have a better understanding of us and our plight. Then maybe we wouldn’t also have to deal with such judgmental glares and comments on top of our own internal struggles and the pain we feel from watching our family/friends go through this with us. 

I realize this is true not only for lung cancer patients, but for a lot of people, and it is one of the big lessons cancer has taught me—give grace! 

The rude waitress might be dealing with a big life challenge and must work through it because she needs the money. The driver who cut me off might be in a rush because a family member or friend needs help. The person who didn’t hold the door for me maybe late picking up kids. Life throws us all more curve balls than we’d like to admit, and if we all learn to give more grace we can help ease each other’s pain than contribute another layer to it.

I don’t think that’s a joy cancer has brought to my life, but it is a lesson for which I’m grateful. Hopefully I’m teaching it to my daughters so they don’t have to learn it through the hands as something as unforgiving as cancer.

Travel Tips for Maafushi, Maldives

After spending 11 days on Maafushi, we learned a few things that I think will help others traveling to this little, local island. There are less expensive places in the world to visit with beautiful beaches where you’ll feel detached from the rest of the world, but the Maldives is a special place. If we had the money to spend on the beautiful resort islands with the exotic bungalows over the water, we would’ve spent a few days there, but I’d still want a few days on Maafushi.

I love getting a glimpse into everyday life of locals. Seeing kids going to and from school, Hearing the call to prayer…even if it wakes me at 6 a.m. Seeing locals jumping on the back of motor scooters to get around the 1.8km island. Going into Suzy’s little Fine Bake Bakery for the best banana bread. Those little things aren’t available to someone staying purely at the resort islands.

Sand and palm trees everywhere makes me happy and relaxed. Granted we were not there during rainy season, and saw only a couple hours of rain the entire time. But having everything covered by sand, and nothing paved by cement or asphalt is relaxing. At first I was annoyed that I dragged sand everywhere, but then I got used to it and realized how much more peaceful it is to have nothing paved.

The all-you-can-eat BBQs (not in the Texas sense) of fish and chicken are fun, but after a few days we grew tired of them. So, we started asking the restaurants if we could order off the menus. Every time the answer was yes, and we ended up with better meals for less cost. We never ate enough to really cover the cost of the buffets, and quite honestly they were stressful to my in-grained American ways. Being shoved in a buffet where other nationalities’ customs are to take as much food as one can pile on a plate, cutting line, and being demanding to staff was stressful to me. There was one time where a brand-new platter of spring rolls was placed on the buffet in front of my daughter, she was excited to get a couple when a woman shoved her way in front of her and took all but 2. My daughter frowned at me, and I so wanted to yell at that woman…not the way I want to feel on a vacation! Our meals off the menu were so much better, freshly made, exactly what we wanted, and we just had to sit at our table and wait to be served while others battled it out in the buffet lines.

The Maldives is super customer-service oriented…but that doesn’t mean fast. They’re on island time, and the faster you fall into living on island time, the more relaxing your vacation will be. They’re super trusting, probably because you will go to jail and have no way off the island if you don’t pay, but no one ever asked for payment upfront. The dollar is the preferred currency, but you better get it before you land in the Maldives because ATMs will only give you Maldives Rupee. (And your dollars better not have a rip in them either, because they will not be accepted. My $20 bills from the U.S. had the smallest little tear in them, and it was as if I had Monopoly money.)

There are no hawkers chasing you down or hassling you on the beach. We’ve been on beautiful beaches in Thailand, Mexico, Bali and my daughter would want to leave because of the hawkers. The girls went scuba diving with Passions and have never been so spoiled on their dives. The Passions guys would load all of their equipment and tanks in their little truck in the morning and then setup everything on the boat. The girls literally just had to show up, put the equipment on, and dive. They even changed out the tanks for them between dives while the girls drank the tea they gave them. Then after every dive, they didn’t even have to take their gear off the boat. The Passions guys took everything back to the dive shop, washed it all, and hung it up to dry. It was all fun and no work!

Then, our ode to watermelon juice! I think we drank it with every meal, and it’s sooooo good. We drink it a lot in China, but there was something about the watermelon juice in the Maldives that just tasted so much better and refreshing. I’ve only been back in China a few days and I really miss our watermelon juice. We also appreciated the alcohol ban because that meant annoying, loud drunk people didn’t exist on the island. (Although, the resort islands do allow alcohol. So, if you want to drink you can head over there or onto the Kaani yacht that is anchored just off-shore and serves alcohol.) But we liked the family atmosphere on Maafushi. My teenage daughters appreciated not being hit on by much older drunk guys at night, and this momma also liked that she didn’t have to become momma bear on those men–an increasing problem in recent years.

You know it’s a good vacation when your daughter has tears flowing down her face because she doesn’t want to leave! Tears at the end of a vacation because it was such a great break from reality and stressful every day life means it was exactly what the soul needed.

Stretching Beyond Comfort Zones

I’ve been a single mom traveling internationally with two girls for about 14 years now. Perplexed looks are often the norm–especially from hotel staff because they are the most aware of the travel arrangements. I rarely meet or see other single moms traveling with their kids. Even living overseas with single moms who have chosen to live in a foreign country with their kids rarely travel during holidays except to return home.

I honestly haven’t given it a lot of thought, and that may be the problem, I just do. These girls have expired passports with baby pictures, and they are always renewed within a year of expiration. We didn’t travel much when they were little, a few trips to Panama, and as they got older Mexico and the Caribbean. Then they started scuba diving and it was every summer in the BVI.

When we moved to China, it was like the green flag at Daytona was being waved in front of me. I put the pedal to the metal and we were off. So many countries close to South China, and decent airlines with low prices. I’d see our school holidays, start searching the Internet for deals, find one, buy the tickets and then we were committed. I did think a few things through having traveled for so many years with my girls and learning some lessons the hard way…by God’s grace was there never anything more than an anxiety attack on my part…but for the most part I will buy the airline tickets and then ask the girls, “Guess where we’re going?!”

I think I got my gumption to travel while attending high school in Panama. I lived on a military base during a tense political climate, and saw many families who would coward to even leave the base gates. The Canal Zone was pretty safe, but even going around the Zone would give them anxiety. The thought of going into Panama City or the beautiful beaches or rainforest areas was beyond them. I, on the other hand, was friends with several Zonians whose families had lived in the Zone for generations. They would take me all over, and my parents didn’t live in fear so we’d go out as a family on weekend excursions all the time–it was amazing to experience Panama. Then, military conflict actually did make leaving the base gates difficult and then these families were transferred to their next assignments.

I thought how sad it was for those families who lived in fear of the unknown and never got to experience and fall in love with the Panama that I did. They lived there the same amount of time as me, and yet saw nothing more than what they probably saw when they lived on a military base in the U.S.–a military base. They dealt with a lot more stress than they would living on a U.S. military base, but got little reward from it. Also, seeing how quickly things can change made me understand that time is a finite measurement (no matter how hard you try, you’ll never get more than 24 hours out of a day). I learned that when opportunities arise you often do have just moments to take them or let them pass.

I was thankful that my parents didn’t allow moments to pass, and we took advantage of opportunities to experience Panama. When I look at my daughters today, I want them to have the same memories of living in China and know that when opportunities arise we quickly evaluate and then take action. It’s led to some amazing memories and adventures. It’s also allowed us to grow individually and as a family.

My two girls have normal sibling rivalries, and are not best friends during our daily existence. But for the last week they’ve been scuba buddies and going out on the boat without me. It warms my heart to see how they come together when we travel as a family, and gives me the reassurance that when tough times hit that they will be there for each other. Travel has offered our family the best, quick lessons on coming together through good and bad times and learning to stretch one’s self beyond normal comfort zones.

I’m writing my stories with the hope that it’ll inspire others who think stepping out of their comfort zone is beyond them either due to family circumstances or illness that a little adventure is just a decision away.

 

11 days in Maldives

After a busy Christmas break followed by numerous cold, bad air-quality days in China, family visits, and a return to the U.S. for chemo and tests that ended taking me around the world (literally) due to snowstorms in Chicago rerouting me to Newark and then across the Atlantic, I needed a Chinese New Year break that had:

1.) Clean air and very warm temperatures.
2.) Lots of relaxation and rest.
3.) Adventure for my daughters (usually scuba diving).
4.) Wouldn’t take us too far off our China time zone.
5.) Safe place for a single mom with two teenage daughters to feel comfortable traveling.

Those criteria actually leave a lot of options, but then cost becomes the defining factor. One place that had been on our bucket list since we moved to China 2.5 years ago has been the Maldives. Cost continually knocked it out of the running. But I learned that planning in advance actually opened it up. While it still doesn’t fall into the budget travel category like Vietnam, it can land in the doable category if we don’t stay at a resort island with the cool cabanas over the water.

When I planned this trip in September, I got the last room at a beachfront guest house (hotel) on Maafushi that would accommodate 3 people (I’ll write another post about traveling as a party of 3 in Asia, just know it’s often problematic). At that time, my health was such that I thought I’d at least be snorkeling, which I may try tomorrow, but as of yet I haven’t felt well enough to do. But being able to do nothing for a week, breathing in fresh, hot, humid air and wading in beautiful turquoise waters has been more healing and needed than I ever imagined back in the Fall.

The girls have gone out scuba diving every day with a very nice dive shop (Passions Maldives) that is connected to our hotel (Kaani Beach). They’ve been disappointed by the coral life (the warmer waters have caused bleaching lately), but have been excited by the abundant, large animal life! Surrounded by 30 white-tip reef sharks one dive, a dozen moral eels another, flocks of eagle rays, curious sea turtles, playful clown fish, and even an elusive frog fish. They’ve even found octopus during the day dives hiding in their little coral caves. It’s different from their other dive experiences, and so they’ve adjusted their expectations and are having fun with the dives.

As has been a theme this year, we’ve faced turmoil at most of the locations we’ve planned to visit. Maldives was looking good, or so I thought. Everyone wrote about how little crime there is in the Maldives, and how safe it is. It is a strict Muslim country so alcohol, drugs, inappropriate dress, being amorous in public is actually not allowed and could end you up in jail. Luckily, we’re on the island of the Maldives with the only jail in the country. Since none of those things are part of our vacation plans, it actually makes the Maldives a great family destination! Being that Maafushi is a local island (an island where the locals live), there are quite a few families here and not the honeymoon destination my oldest feared we’d be walking into.

Then, just days before we were to get on our plane, the country was thrown into a 15-day state of emergency due to a constitutional crisis between the President and the Maldives Supreme Court. There were a few riots in the capital island of Male, and China recommended cancelling vacations to the Maldives. Everyone questioned my daughters as to why their mom was still planning to go to the Maldives. The country is still in a state of emergency. The political prisoners at the center of the crisis are just at the other end of our small island, but we’ve seen no rioting or demonstrations. In fact, there’s been little discussion as to the situation anywhere on the island.

Even in the middle of the country’s biggest turmoil in modern-day history, this is still a relaxing, laid-back, friendly little island. My daughters and I wonder what life is like on the resort islands…they look really cool! But for now, we are happy with our budget Maldives vacation.

Life on a local island allows us to try out different restaurants each meal. The food is a lot of rice, curries, bbq of chicken and fish (tuna), but we’ve also had good pasta and pizza here. For the three of us I’m spending about $40 every lunch, $60 on every dinner and we’re eating breakfast at the hotel (included with our room). We also have ton of water sport options available to us like jet skis, parasailing, kayaks, SUPs, wake boarding, etc. Our hotel is nice, but nothing luxurious.

The people of Maafushi are extremely friendly and helpful! Another aspect we’ve enjoyed is no hawkers. Even when we go in the souvenir stores, no one is annoying us to buy something. No one is selling on the beach, so you can rest in peace and not have someone nag you to let them braid your hair or buy a necklace.

I had no idea how needed a do-nothing but relax vacation was going to be needed…but I’m glad that’s what I got! And the girls are glad there’s still a little splash of adventure.

Traveling with Cancer

Cancer is not my god! That phrase continually travels through my head when I think about what I can and cannot do with Stage IV Lung Cancer. I am a single mom with two teenage girls in high school, and I cannot stand the idea that they will go through life’s ups and downs without me, so while I have breath in my lungs I am taking them on adventures.

By the time my oldest graduates high school on June 1, she will have visited at least 20 countries. I’ve made the decision that in lieu of gifts that most American teenagers receive, we will make memories. Plus, having a car is useless while she is living in China. I’m sure that if we lived in the U.S., she would love to have a car but as a family we have chosen a different route.

Traveling to Japan for her 16th birthday, Maldives for her last Chinese New Year in high school, the Austrian Alps to learn snowboarding will hopefully have a far greater impact on her than the proms, parties and cars that most American high school students experience. But I don’t know. She may one day realize how much of the traditional high school experience she missed and wish she had those memories.

I literally go from chemo treatments back to work or on a trip with my daughters. Sometimes I spend more time in a hotel room than I’d like, or ever imagine I would do. But while God has given me the energy to be able to handle this schedule, I’m realizing that I have new limitations. Laying in bed at my parents’ home was killing me because I was bored and hated the way people would look at me. When I was first diagnosed in China, the doctors looked at me as if I was a dead woman walking.

I’ve been putting off chronicling these adventures, but since I cannot scuba dive any longer I have a lot of time on my hands in the Maldives and decided to finally start sharing my journey of journeying with cancer. My doctor at MD Anderson continually looks at me with a quizzical expression. But he hasn’t told me to stop, and so my daughters and I are off to see the world, make memories and take advantage of every opportunity that comes our way!

 

Jet Lag & Chemo

Since my insurance in China does not offer enough coverage for an entire year of chemo, CT scans, blood work and doctor visits, I have to fly from Hong Kong to Houston every other month for tests and treatments. When I first learned about my insurance situation I went through the stages: anger, confrontation, pleading, begging, sadness and then acceptance. Now, it’s just part of my life and traveling back and forth across the Pacific every other month doesn’t seem that strange–although I know it is.

Less than 24 hours after my body is pumped with Pemetrxed and Dexamethasone, I’m at Houston Intercontinental getting on a flight usually for Tokyo, although sometimes Chicago and this time around Newark (which caused me to actually travel completely around the world for a treatment/tests. My doctor in China calls Pemetrexed, “chemo light”, but it does affect everyone differently. I am thankful that I’ve experienced few side effects from it. I still have hair, although its texture, thickness and curl is nothing like my hair pre-chemo. I get very tired and weak, but not so much that I can’t get out of bed or walk to school most days. I will get a metallic taste in my mouth and the only foods that sound appetizing to me are mashed potatoes, grilled cheese and rice for a few days.

But most importantly, most of the side effects don’t occur until the third day. So, hopping on a plane in less than 24 hours is key to flying for more more than 20 hours because it means I’m getting the brunt of the side effects at almost the same time I’m walking into my apartment. Also, doing the entire trip within a four-day span means I’m staying just one step ahead of jet lag while traveling. I never have time to get used to the U.S. time zone, and my days are filled with so many appointments at MD Anderson that I don’t have time to think–just do.

Of course, my 1.5 days at home before going back to work feel like a cinder-block wall just crashed on me. Luckily, I can practically anything delivered to my door–including grilled cheese sandwiches–in China! But traveling such long distances under less-than-ideal circumstances has taught me a lot about travel:

1.) Get TSA pre-check! It usually does make a big difference, although I haven’t found my Global Entry to be quite as useful. In fact, one trip through Houston actually took longer using Global Entry than if I had just gone through the regular line.

2.) Always try for an aisle seat. There is nothing worse than being seated next to someone who sleeps (or pretends to sleep) for the entire flight and you cannot get up to go to the toilet or stretch your legs when you want.

3.) If you have a carry-on, it pays to get in line early for boarding so your bag is stored close to you.

4.) Asian airlines usually have superior food, service and on-time flights compared to their U.S. counterparts. But, when they’re bad they’re horrendously bad. Most independent travel sites will give ratings on the flights. I will rarely take a Fair flight and will never take a Poor or Very Poor flight…believe me, you will have a story you’ll be telling people for years if you go on one of those flights!

5.) Travel pillows really are better across the front of your neck than around the back of your neck, and sleeping with my head leaning forward on the seat in front of me is usually the most comfortable position.

6.) Stress is your enemy. Think of travel like getting on a rollercoaster. There is very little within your control and once you commit you just go with the ups and downs…TSA wants to check your bag, you get pulled aside, there’s a delay, the person next to you has stinky feet…very little you can do about it and stressing only makes it worse.

While I do not recommend doing the chemo-trans-oceanic flight plan, it actually puts me a little into a zombie-like state. While I drink a lot of ginger ale on flights, in a strange way I’m in a different state of mind and the downs of travel really don’t seem as bad as what I’ve just gone through medically. So, things just roll off my back a lot more quickly and I am a much more relaxed traveler–which makes a world of difference when your in a flying tin can 35,000 feet above the ocean for 12 hours straight!

How it Started

We were traveling in Bali and I noticed that things did not feel right. My scuba diving was never technically great, but now I was floating around like a giant, dead puffer fish. I had to rest a lot at our casita, and my stomach ached. I knew something was wrong, but I thought it was my bad diet and lack of exercise.

I had been a personal trainer/pilates instructor before moving to China and was in great shape. But since moving out to China a year earlier, my body had changed. After returning from Bali, I still waited about a month before going to the doctor. Doctors in China were scary to me, and often gave a diagnosis like too much cold air coming in through the bellybutton or not drinking enough hot water. Eventually I looked as if I was pregnant and had to go to my doctor, who quickly sent me to the hospital where doctors looked as if they had heard the saddest news when I said I was unmarried with two daughters.

I had a CT scan, which I sent to my sister-in-law (a radiologist). The minute she saw the scans, she said I had to return to the U.S. immediately. Through chemotherapy and surgery I have regained enough energy to return to work and travel the world with my daughters. I live by my bi-monthly scans at MD Anderson, and by God’s grace they’ve all come back stable.

Cancer is now a part of my life and my daughters’ lives, and it’s always there. But we do our best to keep it in perspective. While I wish I had another ailment that isn’t listed as terminal, but life is terminal and God has just given me the gift of perspective. Carpe Diem!