First, here is the cut and dry health update:
- Josh is still holding fairly steady. He enjoys visitors and time with the family each day.
- He has had an increased number of difficult episodes - either vomiting or coughing until it's hard for him to breathe.
- Hospice is recommending a hospital bed at this point to help Josh's breathing through the night.
- The tumor is now visible on the outside of Josh's neck again. It continues to grow slowly but visibly from week to week. It's surrounded by a dark, blackish gray area.
- His level of pain continues to rise, requiring more and more medication.
- Josh gets lonely if we do not stay close to him. This is such a shift from the Josh I knew who only wanted to be alone when feeling bad (which has remained the case for most of his cancer treatment). Now, contact with people, touch, being read and sung to...these are all extremely important to him. If I am gone for a few hours, it affects him greatly.
- We are hiring help! Hospice services do not include home health caregivers (something I didn't realize before this experience), so we are paying out of pocket to get about 16-20 hours per week of help on school nights which are our most hectic times. This week will be our first week.
We've continued to have special visits from friends and family. Laura Edwards flew out to see us all the way from Albuquerque! Matt and Rachel Clarke came and blessed us with good conversation, a cleaned out fridge, and delicious food. Last week, Josh's parents came for another nice visit. In the in-between times, we've had local people on call in the case of an emergency. We are thankful for this tireless group of volunteers who have carried us for so long. Plus, there have been so many other outpourings of love - GrubHub meals, home cooked meals, snacks from Trader Joe's, and even a big treat of the kids and me getting to go see the Gold Across America Tour (such a gift, since it takes so much arranging for us to get out of the house!). Thanks to each one of you who thinks of special ways to bring lightness and goodness to this time. And, thanks to every one of you who have sent cards and checks and given donations online. We are amazed and humbled. I am hopelessly behind at thanking you as my time and brain-power for managing all of that is very small. Please know we are deeply grateful.
And now for a few thoughts on being fighters...
The past few days, basically insignificant details about Josh will flash through my mind. Sometimes those are the things that hit home the most that we are losing him. I welcome you to comment with ones you remember. Here are a few of mine: He always loved looking at sunglasses and watches - in stores, in mall kiosks. When we first met, he wore big white sunglasses. He would often hang his sunglasses on the back neckline of his t-shirts. Josh used to point at people playfully but seriously when he had something important to tell them. Josh was great at coming up with nicknames for people on the spot. When I picture the Josh I met and fell in love with, I often see Josh's silky, full dark hair and him running his fingers through it. Josh loved hamburgers; he often said he'd be happy to eat one every day. When he would get a cold or flu, Josh never complained about being sick; he just wanted to be alone. I am amazed by how many little quirks and preferences and physical characteristics make up a person, not to mention the depths of their hearts, the contributions of their gifts, and lasting effects of their relationships.
It's been nearly three years since Josh had the initial doctor's appointment that would lead to us finding out that he had cancer. That first round of treatments was harsh and affects him still today. When the cancer returned a year and a half ago, the treatments became relentless, and we began to lose some of what we knew as Josh. Still, his strong spirit, his love of discipleship, his desire to make art, his commitment to his work, and his delight in social connection continued (though his paralyzed vocal chords made it difficult to speak).
Nearly 8 months ago, that first week in Houston, everything changed. We had walked around the hospital together those first days, eaten together in the cafeteria (though he could really only eat liquids). He was even driving some. By the end of that week, his weight plummeted, his ability to communicate reduced (though his mind was and is still very sharp), and his mobility became minimal. Since then, he has not really been able to eat or drink, he has not been able to make art again, and he has been mostly bed bound.
I say all that to emphasize what a fighter he is! Despite all that, he continues to get up and down for his daily routines - bathroom, shower, moving to his stations in various rooms. Every day around noon he comes down the stairs to sit in the recliner in the living room to interact and read for awhile, then he migrates to the downstairs art studio/bedroom to rest and watch shows. In the evenings, he makes the trek back up the stairs to sleep in the bed we have shared for nearly 20 years. He continues to enjoy communicating with friends and family via messages, as phone calls are too hard on his voice. He loves to spend time with each child every day, hearing about their days and then sitting close together while they watch a show. He loves to hear them laugh and play in the house..as long as it's not too noisy!
He has been determined to keep living to watch his children grow as long as possible. And so, he has fought for that - through pain and coughing fits and mobility issues and difficulties communicating. He has fought for them day after day, week after week, month after month. And, we will tell that story as long as we live. Josh is a fighter, and really haven't we always known that?
I never really realized it, though looking back I can see this thread through my own life, but it turns out I've got some fight in me, too. As this story has unfolded, it has required more and more of me. From the sheer number of daily tasks, to bearing the emotional load of my four humans, to taking on all the responsibilities that Josh used to take care of, to managing the beautiful help that is offered us. The past month or so especially, it has meant very little sleep, as well. Thankfully, we seem to be finding medications that are improving Josh's sleep. But, I am left more depleted than ever.
Allow me a pause for a little bit of teaching about the nervous system...The past couple of years, I have been in a program called Somatic Experiencing. It's all about how life experiences are stored in the body, and it's especially helpful in addressing trauma. I am so thankful to have been doing this training concurrently to this life experience, as it has given me many techniques that have become lifelines for me. One thing we talk about in the program, is that the nervous system decides for you what response you'll have to a survival threat - fight, flight, or freeze. Your response to a survival threat is the result of your primitive brain making a snap decision based on all your life experiences of what will keep you safe in the moment; sometimes, that's running away, sometimes that's freezing, and sometimes it's fighting.
I've mostly been a freez-er or a flee-er. But, I've noticed lately how much I've responded with fight. I didn't choose it, but it makes sense to me. I have a family to fight for. My task that lies ahead is to be the sole parent of three children who I want to feel loved and supportive through what is likely to be the greatest loss of their lives. Running away or freezing would undermine this sacred responsibility. And so, I'm a mama bear, and I would recommend not crossing me. I have never in my life been one to say angry retorts or speak my mind in confrontational ways. But, I'm telling you, it's happened lately. Please understand that I am an exhausted mama bear, pushed to the extreme of what I'm able to handle, and trying desperately to protect myself and my babies so that we can live as well as possible after this is all over. Please stick with me, even though I'm prickly sometimes. I am fighting fiercely day and night for my people, and I'm asking for understanding and also continued support.
And so, yes, I'm at the end of my rope. There is a therapist here in town who lost her husband a few years ago who has been a good resource during this time. She told me this week, that it's "time to cash in all my wild cards." My goal here is to make it through with decent health and strength to raise my kids; so whatever we need to make it through this last part, let's do it! I think it's true that I've been saving up my favors, not fully asking for help - wanting to have some help left for the long haul. But this wise advisor said, "this is the time." I don't know what that looks like or means. And y'all, I'm so tired of asking for help. I will be honest at a deep level here and say that I rarely ask for help because being rejected when I'm in serious need is one of my deepest wounds. And, it has happened multiple times through this experience. Plus, I've been in need of help for so ridiculously long. I rarely cry, but I'm tearing up writing this - that's how emotionally raw it feels to put this out there again.
I will leave you with two lists. First of all, my “dream” list of all the ways I would want support if it were possible. My friend Cora may be putting together a new care calendar soon, so I'll post that when we get there. I also feel open to whatever fun and crazy wild cards you have for me! At this point, I'm just along for the ride. My well-meaning attempts at holding a beautiful space with intention are now falling apart, and I'm open to how God is moving any one of us if it means making it through in a healthier way! Perhaps it's audacious to put these things out there, but why not invite some creativity and new energy into all this!
- Weekly housecleaning. If the house is at least a little clean, I feel less crazy. Also, I just want someone else to make the calls and arrange it. This is true of everything on this list. My prefrontal cortex is no longer working at full capacity. Any task with multiple steps feels so very hard. I cannot remember any proper nouns. I cannot remember what happened last week. I cannot remember what month or season we are in. I sometimes get disoriented about where I am. Don't worry - I'll be okay. I just need you to understand the level of functioning I'm working with at this point. Usually, I'll keep doing what I'm doing even if it's harder, because taking the steps to change it are just too hard.
- Once-a-month night away with the kids. They need breaks and fun. This is all taking a toll on them, as well.
- Once-a-month weekend away alone. I desperately need to be alone. It's the only time my mind clears, and I feel like I can think or regroup. All my efforts at this over the past 6 weeks have fallen through.
- Help with planning/organizing (see the notes on the first bullet). It's actually the planning and coordinating that feel more daunting right now than the finances.
- Short friend visits for Josh a couple of times a week, plus someone to come pray with him once a week.
- Home-cooked meal by someone else once a week. Y'all, this feels like love and care in a way nothing else does.
- Once a week planned outing for the kids - the idea plus what's needed to pull it off. (2-3 hour activity)
- For meal help, we strongly prefer grocery store/homemade to restaurant food. We are a family of people with delicate constitutions who are even more sensitive due to all we're going through. Meal help could be a bag with all the ingredients and a recipe (quick meals, please), school lunch items, salads for me so that I stop just eating snacks for lunch. I love to cook, you guys, but right now it feels like another impossible task.
- Grocery gift cards and contributions to the Go Fund Me are always welcome. I don't expect I'll be able to work again for quite awhile, so we're trying to make a sustainable financial plan but also prioritize the health of our family over worrying about money.
- A full night of sleep once a week. (Totally just dreamin here...)
And secondly, the list perhaps you've all been waiting for. I have resisted writing it for so long, because I didn't want to sound mean or make anyone feel bad. I know that everyone says things with the best of intentions, and I know we are deeply loved. And, mostly, I've been able to let things go and see the intentions more than the words. Still, some things actually do get to me. And, since I'm riding this wave of fight response, I 'spose I can let ya know. Maybe it'll be good info for the long run or help you support others better. Please don't take these personally or think I'm calling out anyone in particular. Many people have said these things - all I'm certain with love and desire to be helpful. I also think we all have different things that bother us. These are the ones that rub me the wrong way. If you've been in a caregiving role, perhaps you can comment with yours. I have included two other links for slightly different lists at the end of this post. Some of those things don't really get to me! But these do...
What Not to Say:
- "Thank you for sharing." This is my absolute least favorite. It feels so mild when I'm going through hell. I know people say it when they can't think of anything else to say. It's usually when I've shared something emotionally jarring or raw. I would much prefer profanity.
- "Let us know how we can help." When people say this, they are giving me another task. And, it's not an easy task to try to read someone's mind of what might be a possible good fit of how they could help. I love multiple choice or an idea of how they'd like to help. My life is like I am living in an unrelenting storm. I promise I will never get back to these sweet sentiments. I need people to reach out to me with concrete offers.
- Advice. Just, no thank you. I've always hated it but now more than ever. Please realize that day in and day out I try to figure out how to do this well, consult with others who I trust, and ask questions of others in similar situations. The only exception to this of course is when I ask for advice.
- "It's whatever you want." Y'all, I don't like making decisions in the best of times. If someone is making us dinner, I want them to just make it - not to ask what sounds good or what we want. If people are coming over to help, I want them to just jump in. I have no boundaries anymore. Wash my dishes, clean my toilet, pick up my kids' toys - I promise I won't be offended. (I know this is tricky when people offer restaurant food. It can be such a blessing here and there but it can also be really stressful for us to decide on a place and an order. Both things are true, which side note...is the hardest part of this whole thing. Sometimes there is no good answer and sometimes what I want is conflicts with itself. I think it's part of the intensity of this situation.)
- Comparisons to the passing of the elderly people in someone's life. This just isn't the same. I know it's the experience people have with cancer/Hospice/death, and so it's easy to slip into talking about it. I'm asking people to let this situation be the unique tragedy that it is, please.
- Empty platitudes and encouragements that don't acknowledge the pain and struggle. You got this. You're doing great. We're hoping for a miracle. It is what it is. Everything happens for a reason. You know the ones...
- Trying to pull out a lesson or life learning from what I'm experiencing. Those life lessons are hard-won, and the kids and I will have to come to them ourselves over time, through tears and pain and wrestling with God and finding our own way. It's just off-putting when people try to teach them to us. If people have some hard-won wisdom, then i ask they share it gently and with love and humility, knowing our journey and conclusions may be different. Ask questions and learn about our unique story first. No assumptions, please.
- Telling me what they would have done. This has happened so often with our cat who the kids love but is a stressor for me. It happens with the kids and schoolwork and where they sleep and so many other things. It comes off as feeling like judgment. I'd prefer people just keep it to themselves, remembering that the circumstances are likely different and no one really knows what they would have done in someone else's shoes. I love just being cheered on with what I am doing, even if it's imperfect.
- "You're just lucky that..." or the related "Other people don't have the _________ you have." I know that. I realize we are the lucky ones. We have support and friends, and we've had a life we've really loved. Our story is the kind that can be shared on the internet while other people have private situations and suffer silently. I'm not looking for pity, just solidarity and understanding. This comment is a silencer. It feels like it means - be quiet and suck it up. I promise you I care about people's struggles, even if they are as small as they messed up someone's order at the restaurant. It's my profession to be empathic and to validate what people are going through. I will not make other people's struggles seem like less, I'm asking that people afford me the same grace. This week the therapist I mentioned earlier encouraged me that I will have so many chances throughout the rest of my life to pay this forward to other people. That is my deep desire. And, in the mean time, may we all honor the pain and struggle and suffering of our fellow human beings at whatever level it happens - without feeling the need to silence others through comparison.
- Accountability questions. Are you in therapy? Do you ever get a massage? Are you getting enough sleep? I know all the right things to do, and I am fighting to do them all the best I can. The answer to these questions is "none of your beeswax" to everyone except the few people I have invited into the role of keeping me accountable and supporting me in these very personal ways.
- Nothing. The absolute worst thing someone can do if they know me well and love me is to say nothing, to "give me space." I may want physical space and time without visitors, but I want to be checked on. I know, I know...I just made that harder by making this long list of things that irk me. But, it's actually simpler than it sounds. I don't need magical or wise or perfect words. And, the truth is these comments are the minority, and if you said them to me I've already let it go. You are a crew with some of the best supportive words I've ever received. And often the off-putting ones are sprinkled in with good stuff, and so they're super easy to ignore. I just think we can all do better (including me), so I hope these help AND especially this part...
Here's what I love: when you text me and tell me we're on your heart and you're praying for us. I have one friend who just texts me a heart emoji when she's thinking of us or praying for us. Mostly, I just want to feel like people are "there," like we're not alone. I also love when you offer something specific with the understanding that we might politely decline. This feels like you've thought it through and like deep, practical caring. I love "thinking of you today" "I know this is so hard" "I don't know how you're doing this" "We love you" "We love your family so much" "My heart is broken for you guys." I love funny memes and stories. I love memories you have of Josh. And, when all else fails, we always love snacks. :)
Here are some recent pictures, and one oldie just for fun.