18 December 2017
It’s been a long six months and not much has changed. I’ve been trying to find a rhythm to figure out how to live with these weird symptoms, but nothing really pans out. I’ve been feeling tired lately. Then last week, Tuesday night, my right lung started hurting. It felt like pleurisy, so initially, I took some ibuprofen and rested. Son woke up Wednesday with crusties in his eyes – so I took him to the doctor. While she wasn’t convinced, she still called in a script for drops (pink eye). I went ahead and took him back to school. Thursday morning, he was in full-fledged pink eye mode. I kept him home from school and we rested. I’ve been so tired lately – sleeping through more days than I’ve been awake. Friday after school, Sis told me about her ears making a sloshing sound. She said it didn’t hurt, but I figured I would call her in an appointment on Saturday. And so, I did. Double ear infection for her. While she had antibiotics, Sunday she just rested and by midnight, she was downstairs in tears crying because of the pain. I called her into school and made an appointment for myself. After staying home with Son on Thursday, I got a lot done on Friday, despite constant pain in my lung. Only on the right-side lower area, it feels like stabbing pain. On Friday night, I took a hot shower and all my meds then tried to relax. Saturday, I had a migraine. Rich worked at HiHo’s and then on his truck. Friday afternoon, I also had a “migraine” – sensitive to loud noise, felt moody and tired. Rich was running around changing my tires to dad’s, from his old truck. . I took my meds and rested, Rich cooked supper. Saturday, I took pictures of the a couple of families while Rich made supper and visited with Fozz. I met with a student, and we decided this Sunday would be her last youth group (and mine); then I brought salad home for the guys. Saturday night and Sunday the lung pain got severely worse – made my right arm feel numb and hot. I took ibuprofen and lorazepam to try to ease the pain. I slept the entire day Sunday alternating wake times with meds. I was able to go to youth group and even met S and her mom, A afterward. When I got home, I took meds and tried to relax. When Sis came down crying, I did the best I could to help her with her pain.
I knew I needed to see the doctor when Fozz came by to look for a deck of cards for his workout. He didn’t say anything about it, but I knew. I see it every time I look at him. It’s a fine line between sucking it up and getting it checked out. Because I’ve spent the past five months being told the tests don’t show anything; that there isn’t anything wrong, that it’s just a “silent migraine”; and yet, the symptoms continue – has me frustrated and feeling like I need to just stay away from the doctors; like they don’t really care and aren’t going to look beyond the most common things.
I knew today when I went into the doctor that he was going to tell me that it was pleurisy. He did say that he wanted to run other tests, just to be sure. And so, they came for a CBC and I went for an x-ray. When he came back in, Dr F said that I did have an infection in my lungs – not pneumonia – my lung sounds were clear – yet he said that the right lung wasn’t moving much air. He prescribed antibiotics and steroids – the burst – taper system and sent me home. This is the “art” of medicine. He has absolutely no idea what is in there, how it got there (he said I probably inhaled it), or which “cure” to give me. My appetite has been waning, I’ve been exhausted, I’m wheezing, my stomach is bloated, I haven’t pooped in a week, things don’t feel right, I have shortness of breath to the point where I feel dizzy, (like I’m going to pass out) I’m tired and sleep all the time I can. A month ago, I was having night sweats. I have dots (lesions) all over my legs, they say it is psoriasis – yet the dots never go away. I struggle to find words, have slow speech, and forget everything I don’t write down or repeat.
So, today, I made the decision that they get two weeks. That’s how long he said it could take to clear this junk out of my system. I asked when I could expect improvement and his final number was two weeks. That’s all the time he gets. I know that my dad spent six months chasing pneumonia, only to be told it was non-Hodgkin B large cell lymphoma. It won’t take that long for me. They get two weeks. After that, I will either ask to be relieved of the pain or figure out a plan with an oncologist. I won’t make that decision today. Today, I’m just going to start this book. It’s been begging to be written for quite a while anyway.
Whatever happens, don’t blame God. Listen, if I know one thing for certain – if my life is worth anything at all – it is that God does not take things away like some angry Santa going through his naughty list. He is not out to get us like some would say. God is loving and kind and merciful and just and death is simply an end to a physical thing. Our bodies are not created to be eternal – our spirits are. God gave us the way into eternity through Jesus Christ, and so, when our physical selves must perish here on earth, we can take delight in knowing that a loving God has made a way to care for us in His heavenly home forever.
Don’t blame God.
I’ve always been honest with my kids. Why would I hide or shade the scientific fact that our bodies are temporal and will not last forever? We begin to die the moment we are born, and this happens at different speeds for everyone. So why should we blame God when it is the time for our souls to separate from our bodies and be joined with Him in heaven?
Oh yes, the pain we feel being left behind. We, who die, once dead do not hold onto the method or moments prior to the final moment in our physical realm. Those of us who have been saved by grace through our faith in Christ no longer trapped here do not fret or stir. We move into our new room in the mansion God has prepared for us. Those who are left behind do the arduous task of grieving and the even more formidable task of moving forward; finding our way and a new cadence without the ones we love.
Today, as I was putting my clothing on, I glanced into a mirror and saw the x-ray. I knew what I was looking at. My own body – the one with the expiration date. Do I know that date? No – it wasn’t stamped to the film. But what I saw was my immortality, my own reality. I am finite. In a flash, a million tiny, fragmented thoughts paced through my mind and among them was the fact that I have given up much – quit many of my responsibilities – just recently. Did I know? Not really.
So now tonight, I began drafting this book, so that if my expiration date is indeed near (or if it is long and we just don’t get to talk about all these things), I will have written down a few of the important things and ideas. I will be able to say what I need/want to say, and you will forever be able to read it
In all the places I have sat with dying people – and by dying, I mean actively dying, a common thread is that they all want to be known. And isn’t that what we all want? To be known. To have someone in our lives who has blown past all the barricades we so carefully erect. To be known for more than the work we do or the behavior patterns we create. To be known for all our imperfections, quirks, and gifts. To be known.
We spend a lot of time building walls and casting shadows so that few people can infiltrate our world and speak of things that happen in our safe cocoons. And then one day we wake up in our comfy shelter and realize that we’ve blocked out people to the extent that we’re lonely. Sure, we have coworkers and associates and casual friends, but we don’t have deep relationships and companions and meaningful times with any substance. And then, we want to be known, but those around us can’t know us because we’ve made ourselves too safe.
If we’re honest, we want to be known and to be safe, and we’re too prideful to let people in. Being vulnerable takes great courage but it is the only way to truly be known.
I’ve lived pretty openly. One of my favorite things to say to students over the years has been, “What are they gonna do? Take away your birthday?” I say this because the truth is that no one can take anyone’s birthday away and that is pretty much the ultimate thing. Sure, it hurts to lose a game, a car, a phone. But in the end, that’s all stuff that can be replaced. So, what is the worst thing that can happen by living openly and honestly? People think worse of us? Well, then maybe they aren’t the right people to be in our shelter. Maybe they stop talking to us or associating with us. Well, that’s kind of like the trash taking itself out, isn’t it? Not that people are trash, but it certainly eliminates those who are not in our lives for the right reason. Yes, those who belong in our safe spaces tread lightly. They give us grace and return our honesty with their own.
Another great bonus to authentic and open living is freedom. If I am not so focused on hiding from or keeping people out of my safe space, then I can be free to just be. I don’t have to worry about remembering what I’ve told to whom, which is super good right now, because I have zero memory! So, letting people in and being known start with being honest and open and being at ease with yourself – imperfections, past, abilities, weaknesses, and all. You must be comfortable being real.
I’m okay with who I am. Sure, I’d like to be more intelligent. I’d like to be more funny, carefree, and fun. Yes, I’d like to enjoy being able to just lay things aside and jump off the responsibility track occasionally. But I’m happy with the fact that my care and concern for others allows me to know them. My desire for safety and preservation helps others to know that I would (and have) do whatever it takes to keep them (and their confidence) safe and cared for. I’m okay knowing that I am vulnerable by sharing my story with others and allowing them to see my mistakes and imperfections.
I went to the doctor and had an x-ray of my chest to see where the pain is coming from. When Dr. F came in after viewing the film, he seemed confident that there was an infection inside my lung. I listened and asked how that could happen. It’s not pneumonia or bronchitis; it’s a sac or something like that, he says. He said it is likely that I inhaled something if the medication works, it will clear right up. I’m numb. I think about my dad. This is how his lymphoma was found. He went in for months and was prescribed antibiotics and steroids – hearing repeatedly that it was pneumonia. I set my mind on this round. It’s all I’m going to allow. At the end of this medicine, if the pain returns, I will go to a specialist. I will not give up six months of my life. Not when the stakes are so high. But then, what do I do? I looked in the mirror as I was getting dressed and saw it there, the film of my lungs. I saw the picture of myself on the inside. I wonder what will happen next.
2017 began with me attending classes to grow in ministry. I had every intention to become some sort of lay pastoral caregiver (perhaps Hospice, a nursing home visitor, or a hospital chaplain)? I wasn’t really sure but I suspected that I was growing out of student ministry and into adult ministry. I struggled with the balance of how to minister to others, care for my family and be the best wife I can be. I wondered what was next.
Of course, the journal was left incomplete, as I will leave it here. I’m sure if you’ve read this far, you already know how things turned out. But if not, just keep reading.
Momma Rich's 