Tuesday, June 28, 2016

We've Landed - Part III

After making it through customs, I felt like we were pretty in the clear as far as the logistics of the move. But then life said PSYCH. Farley has an aunt who lives in the city we flew into and she offered to collect some of our baggage because we wouldn't be able to bring it all on the small plane to our final destination. We flew on Azul Airlines and were told that if we had purchased our tickets all as one flight, we would have been able to take the baggage along without any fees (assuming there was space on the plane). Unfortunately, our flights leaving the states had been delayed two days and it was hundreds of dollars cheaper for us to buy the Azul tickets separately. We had somewhere around nine hours before our final flight, so there was plenty of time for his aunt to arrive.

There was no wifi in the airport, so trying to occupy the kids after more than 24 hours of flying and 36 hours without sleep was an Olympic feat. We did eat lunch at a Subway that was in the airport. Everything there was expensive and terrible (which seems to be a common airport experience for us). When his aunt (and uncle) finally arrived, they were excited to see the kids, so I was able to get a small break. This part of the journey is a little bit of a blur because I was delirious after the adrenaline and no sleep.

Finally it was time to board our last flight. And it was then that we realized that we had to pass through security and head to another terminal to get on our final plane. It turned out we had been waiting at the passenger check-in area the whole time. We checked in quickly, but we had to pay an extra fee for the few bags we were taking on the plane. There was a lot of haggling on Farley's part and I tried to stay out of it because I didn't really know what was going on. To this day I understand that we paid a small fee and our bags made it on the plane. 

When we went through security, I realized no one was taking their shoes off. We didn't have to take every electronic item out of our bags, nor did they check any breastmilk. However, my husband had rearranged some of our items and had placed a power drill in our carry on. Can you imagine what a power drill looks like going through an x-ray machine? Queue giant heart attack. Farley had to take the power drill out of the carry on, run back down to passenger check in, get the power drill placed into our luggage, and go through security again.

We decided that while he did that, I would proceed to the gate with the kids. Except, I couldn't find our gate because past security was a wall of windows that looked out onto the tarmac and there were no gates in sight. I tried asking an employee, but the directions she gave me we so confusing I couldn't understand them. Go down a hallway, use stairs, get on a bus? I thought for sure we had some type of communication error. I was getting very stressed out at this point because our plane was taking off in minutes, I couldn't find the gate, and I was separated from my husband. Amazingly, I saw my husband sprint through security and he was able to get directions to our gate. We did have to go down stairs, but there was no elevator near us. We said to hell with it, we're taking everything down the god damn escalator! We had the baby in the stroller and one of the stroller wheels got stuck at the bottom of the escalator. The line became backed up behind us and we ended up kicking the stroller multiple times to get it unstuck. I didn't even care if we broke the wheel off at that point because I saw that very quickly the other passengers were going to start falling on us. 

We made it off the escalator, stroller intact, and realized we did have to get on a bus! Brazil was not making it easy for us. Actually the last plane was by far the worst part of the whole trip. But we managed to get our carry-ons, stroller, and two kids onto the already jam packed bus. The bus took us to the jet - which was not at a gate at all. It was in the middle of the tarmac with a few other small planes. I've flown on prop planes before and know they don't sit at a gate, but I didn't realize the jet wouldn't be at a gate either. And I was still concerned that we wouldn't be able to bring the stroller and car seats on the plane because we were told it was an "if there's space" situation. Thankfully they were able to take everything and the four of us were on the plane and finally headed to our destination.

Wednesday, June 22, 2016

When an In-Law Has Cancer

It's been ten days since my mother-in-law passed away, but I think this information may be useful to someone in a similar situation. I wrote it before she passed, so it's in present tense and I can't bring myself to change it. This post isn't elegant and it isn't meant to be a rant or outpouring, so here's my apology if that's how it sounds. The intent of this post is to provide a real-deal account of what you can expect life to be like when an in-law is diagnosed with cancer. (Obviously not everyone will have the same experience, but here's one account...)

Where do I even begin? When your mother-in-law has cancer, you're put in the extremely odd and uncomfortable position of "removed supporter." You're family, but you're not immediately family like the sons and daughters and grandchildren are. You're devastated that this is happening to someone you love and that your spouse has to watch their parent deal with this nightmarish, slow, and painful illness. But you're also aware that it's not your parent. It's not your grandparent. My mother-in-law loves me (and I love her), but I think her priority is spending time with her kids and grandkids. While my husband fills the role of primary caregiver, my role is secondary caregiver. Sometimes I do things for my mother-in-law, but most of the things I do are to provide care for my husband, so that he can provide quality care for his mother.

A lot of the support I provide comes in the form of keeping life normal and taking care of "life stuff." As the spouse, I'm the one who makes sure the house is clean, food is cooked, the kids make it to school, and bills are paid. I keep our life on track and keep things running smoothly. Watching someone go through chemo is terrible and knowing how it could end is overwhelming. Basically, I'm the rock while everyone else is dealing. That doesn't mean I pretend nothing is going on or that I ignore everyone's grief. It means that when my husband breaks down, I have to put my grief/bad day/stress/tiredness to the side and provide a strong shoulder for him. It's not easy. It's not easy to swallow your feelings and to understand that right now they are less important than your spouse's grief. When the kids have been terrible all day and I did not sleep the night before and I still have to put the clean clothes away and make dinner.. it's not easy to suck it up and get it all done so that my husband can focus on taking care of his mom.

I also run interference between my son and my husband. Our daughter is too young to speak or understand the situation but our son is (almost) five. He doesn't understand the concept of death (it's not something we've had to deal with previously) and sometimes his comments (while completely innocent) can be abrasive. For example, my husband spends almost all of his free time at my mother-in-law's house. When my son isn't allowed to go, he'll ask, "Because vovó going to die?" It's too difficult for my husband to sit down and explain this with him, so that's fallen on me. I know the question hurts my husband, so when my son says something like that, I'll quietly take him into his bedroom and we'll have (again) a talk about her situation and how it could end. And I remind him that saying things like that hurts Papai because that's his mommy and he loves her very much. And I know if it does happen, managing the kids' grief will fall on me as well. I know my husband won't be strong enough and that's okay.

I'm also hear to listen. I remind him that I love him and support him. I tell him that if he wants to cry or scream or vent, my shoulder is available judgement-free. I reassure him that he has the right to feel any way he needs and that it's not a reflection of his masculinity. When his mom has had a particularly bad day and he's visibly overwhelmed/exhausted/depressed/anxious, I provide a comfortable place for him to relax and de-stress. We've been dealing with this for almost a year and there are only two ways it will end. I live in daily fear of the negative outcome because I know the consequence will be even worse than what we're dealing with now. My husband already lost his father after a long battle with stomach cancer and chemotherapy and it led to his mental breakdown. I think his reaction this time would be even worse and I dread having to be the rock because I know it will be horrific. I hope that doesn't sound selfish, but I'm mentally and emotionally preparing myself for it.


Here are two resources, if you find yourself in the same position:
For Spouses, Families, and Friends - Cancer.org
For Family and Friends - Cancer.gov

As a follow up, I will add that my husband has handled the loss much, much better than I expected. I think a part of him is relieved that he was able to spend time with her and that the suffering is over. My son still hasn't quite grasped the concept of death, even after our talks, the wake, and the burial. We're not pushing it on him. We did tell him that he can talk to her any time he wants because she's in his heart and watching over him. 

Monday, June 13, 2016

Maze

My mother-in-law, Maze (pronounced Mah-zay, a nickname from her name Maria Jose), passed away yesterday. My husband left the house and in a matter of hours he had made all the arrangements. He was so incredible. I expected him to break down and melt into a useless puddle when the time came, but he was an absolute hero. I, on the other hand, I feel so angry; I want to go up to the third floor patio and scream. I feel so cheated. But first, I want to tell you about her.

Maze's father was well to-do, but he was also a rambler. She has many half-siblings, some whom were recognized by her father's family and some who were not. Maze was in the latter category. So while some of her siblings enjoyed a comfortable, affluent life afforded by their father and later by his estate, Maze received nothing. Everything she had in life, she created for herself. 

Maze married young and had four children. Her husband was abusive and a cheater. After she kicked him out, it was up to her to provide for herself and kids. She made knick knacks and walked to the center of the city to sell them. This is not an easy walk. She lived near the top of a favela hill and it's a couple km hike. It's incredibly steep and I get nervous every time we drive up and down the hills. I feel like the car is going to flip right over. If you've ever had to work in sales, you know it's not easy. It takes courage and self confidence. Maze had that and then some. When my husband was a teenager, his father was diagnosed with stomach cancer. Maze allowed him to live in her home and took care of him until he passed. (It was his passing that spurred my husband to come to the States). That's the type of woman she was. Tough, strong, and incredibly caring for her family. 

Maze was also an amazing networker. She took on an additional role as a political campaign manager for her neighborhood. Politicians would seek her out and employ her as a kind of street team manager. They knew that if they wanted to win her neighborhood, they needed Maze. Over time, she made a lot of money doing this work, especially for Brazil, but she never wanted to leave her home. She was extremely well respected throughout the city. I've never been afraid, even as a white, obvious American, of walking around her favela because I am Maze's daughter-in-law and they know it. We get greeted by the police officers and drug dealers alike. 

Fifty-something years into her life, Maze decided to buy a home in the neighborhood she had always wanted to live in - Jardim Perola, where we live. Together with Maze, we bought a building in that neighborhood and renovated it. Us downstairs, her upstairs. After a difficult life, she was financially very comfortable, her kids were grown and all led productive lives, and she was ready to retire and enjoy everything she worked for. Ready to enjoy her five grandkids. But last summer, at the very end of the renovations, she was diagnosed with ovarian cancer. 

She never got to live in the house she built. It sits above us, empty. She never even saw the new tiles in the garage or the new painted railings on all the stairs. And I feel so angry with the world because of this. Life kept dealing her bad hands but she jutted her chin out and said, "That's not how it's going to be." And right when life was supposed to be easy for her, she gets a painful, advanced illness. It's so fucked up I can barely comprehend it. I feel so selfishly angry that after skyping and calling for seven years, my kids and I were finally able to hug her in person, but we could only get nine months with her. And for a lot of those months, she was too sick to leave the house. Too sick to hold the kids. Too sick to walk. My daughter will have no memories of her. My memories of her are tainted with images of her needing to be supported while she walked. Tainted by feeling ashamed of my long hair while hers fell out. Tainted by all the times plans had to be cancelled because she was too sick to participate. I'm angry that her tourist visas were always denied and that we never got to show her our life in the States. We wanted to take her to Disney World with the kids. I feel angry when I see pictures of my sisters-in-law and her with long hair and vibrancy and energy that I never got to witness. I have only one picture of us together because she had a stroke right before we arrived, lost movement in half her face, and was self conscious of her smile. I feel angry that I never got to spill all of this out to her and tell her what an amazing person she was. I did often tell her how much I really loved her, but I'm not sure if she knew how much I admired her.

Tuesday, June 7, 2016

Let's Talk About It

I've said before that we moved to Brazil with only two weeks notice because my mother-in-law was diagnosed with Stage Four Ovarian Cancer. I wrote about it somewhat on the How We Got Here page. I write Stage Four Ovarian Cancer with capitals because it feels like a proper noun. How could it not be? It's such a serious diagnosis and has turned the lives of five families upside down. There's no way that doesn't deserve caps. Actually, it deserves to be written in all caps and a bold font. 

When we arrived, she was supposed to have surgery to remove the tumors. But, her doctor decided that since the tumors and cancer were all throughout her body and she was in such a frail state, the surgery would have to be cancelled. She would have to begin chemotherapy without the surgery and just "see how it goes."

There is a controversial cancer fighting drug here in Brazil that my brother-in-law was adamant she try. Around the time of this article from Latin Correspondant, a petition from a lawyer was needed to obtain the medicine. My brother-in-law spent a few thousand reais and received permission for her to get the medicine. But, there was a long waiting list and a very small supply. The medicine came in November with a one month supply. By the next month, the University of Sao Paulo had run out of medicine. In April 2016, President Dilma legalized the production and sale of this medicine. However, the University of Sao Paulo shut down the laboratory of the chemist who created it. So, although it's now legal, it's unavailable. The very short version of the story is that the chemist, Gilberto Chierice, was creating and distributing the medicine without proper trials or approval. His skeptics claim that the compound is worthless and provides false hope for cancer patients. His supporters claim the compound reduced their cancer and saved their lives. It's my personal belief that if someone is dying, they should be allowed to try whatever treatments they choose. (And that's why I'm a proponent of medical marijuana.)

My mother-in-law took the miracle drug for one month in November 2015 and began chemotherapy the next month. She has been in chemotherapy on and off for six months. There are a lot of weeks where she is unable to receive treatment because she's too anemic, despite taking iron, eating iron-rich foods, and receiving transfusions. My in-laws are constantly researching how to obtain this medicine again and they found a report that claims two vitamins available on Amazon.com are the chemical equivalent of this medicine. We've been purchasing the pills, having them shipped to the US, and then re-shipped to us here.

So her treatment has been a combination of sometimes chemo, sometimes the miracle drug. There are periods where her health is great and periods where she is very weak and tired. She's also on a lot of pain medicine, so sometimes her good periods are marked by incoherence. The good news is that her tumors have shrunk a considerable amount and her doctor thinks her progress is very good. Whether that's due to the chemo or the medicine, who knows. No one wants to talk about it, but when we arrived her doctor gave an outlook of 6-12 months. It's been nine months and although her progress is good, her overall health is failing. At this point, it's just about spending as much time with her as we can.