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.

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!