It’s been five weeks. On Monday, November 20, we got the results from my mom’s biopsy on a growing lesion & lump on her tongue that she has cancer. This came after months of issues with this lesion, and multiple misdiagnoses as she sought help for it. Even writing that it’s been five weeks (almost six) feels surreal. It feels like a previous lifetime ago. I went from thinking “my mom just needs to find the right Dr to figure out what’s going on and get her the right medication so she’ll be back to normal”, to “our lives have changed and will never be the same again.” In so many ways.

I’m my mom’s primary caregiver. It’s an honor to be that for her. As some of you know and some of you can imagine, there’s been very little time for me to process this news personally. Reasons for this are:

1. The overall time from her diagnosis to where we are today is so short for the amount of work needing to be done and grief, pain and suffering felt.
2. We have four children ages 4-11, and we homeschool them.
3. Thanksgiving & Christmas.
4. Mom’s health seems to be rapidly changing and her needs increasing rapidly as well.

We are 7 days from her initial treatment of surgery, and I’m sensing it’s time to write and do some processing for myself, as well as to share with the people who are far away and more disconnected from my reality but care all the same and are keeping us upheld in prayer. My mom is journaling throughout her process on this caringbridge website, which you can check and follow if you want her health updates. https://www.caringbridge.org/visit/laurieshealthjourney2

The words that come to mind to describe how I’ve been feeling and what I’ve been experiencing are all over the board. Confusing. Heart-breaking. Helpless. Angry. Broken. Overwhelmed. Devastated. Grieving. Hurting. There is no rhyme or reason to grief. There is no schedule. I find myself falling apart in the car most often, probably because it’s the only place I am alone. One day a few weeks in I was pulling into Fred Meyer’s parking lot for my weekly grocery run, and “Even If” came on the radio by Mercy Me. That was the first good ugly sob session I had with God. No tissues in the car, of course, and I was on a time schedule to get home, so yes, I went shopping with an inflamed red nose and puffy eyes and a snotty sleeve on my coat, and got a few weird looks. I couldn’t care less.

Then there are times when I can’t fall apart, though everything inside me feels like it’s breaking. Sitting in my mom’s oncologist/surgeon’s office, receiving the news that she will need a glossectomy, reconstruction of her tongue from a portion of her arm or leg, removal of her neck lymph nodes, a trach and G-tube, loss of regular speech, no guarantee of much after the surgery because so much is unknown, was probably the microcosm of what this looks like for me being Mom’s caregiver. I feel as if I’m dying inside, yet my mom has been hit by this shocking news and needs me to be strong for her. So I took notes, asked questions, wrote everything down so we could remember outside of the shock of the moment, and found space later on to cry. One time I was able to cry with my mom about the news. More often I’m finding she’s leaning on me for the strength she doesn’t have due to lack of sleep, increased pain levels, emotional distress with facing this upcoming surgery and her unknown future.

This is all new to me. I’ve never walked with a close family member or friend through cancer. I’ve never known anyone with tongue cancer before. I’m learning in leaps and bounds what it means to be someone’s primary caregiver. As one of our social workers put it, taking care of Melissa is taking care of Laurie. Apparently I need my own support system to help carry my mom through this. I knew I did, but having our social worker and others who have been a caregiver confirm it has been so helpful. Part of the last few weeks has been slowly building that care team up. Finding the friends who can listen and support me. Connecting with a cancer caregiver support group. Organizing rides and care for our kids. Putting a meal registry together (we’re a vegan family, y’all! How difficult is that? Yet people are signing up for meals!). Talking with other caregivers. I’ve been particularly encouraged by Beth, one of my mom’s old friends from my childhood Vermont days, who has been an ongoing caregiver for her disabled daughter for as long as I’ve known her. She gave me words of life that felt like drinking from a pure well of water after a marathon in the desert. They came from her experience, from her own valleys and tears and grief, from the comfort and wisdom she’s received from God, and I am so humbled that God made a way for me to sit and receive them.

I’ve also learned some painful lessons. There are a few exceptions to this, but both Mom and I have experienced that many of us simply don’t know how to walk with someone through deep pain and grief. Our culture isn’t equipped to do so well. Even speaking from a Christian perspective, the church doesn’t know how to do this well. And I don’t know how to do this well. I can’t tell you how shocking it was to go from one Sunday at church, not grieving, to the next Sunday at church, grieving, and see the difference. It’s as if I had lenses taken off and I saw the situation more clearly. I felt so out of place. I felt like I didn’t belong. Like one Sunday I could see and the next Sunday I was blind, and I realized the whole church service and way we do life together caters only to the seeing people. Not because the people don’t care, but because they’re not blind. They haven’t thought about what it’s like to be blind. They haven’t given it much thought because they haven’t had to. Previously, I certainly didn’t. I had experienced deep pain, but not to this level. When someone I knew was suffering, I remember well my multiple reactions: discomfort, helplessness, not knowing what to say or do, glad I wasn’t going through what they were going through, would tell them I would pray for them, and I would, but overall I remember a basic lost-ness. I didn’t know how to join someone in their grief, and sadly, I didn’t seek to learn.

Now I understand better. None of us choose deep suffering and grief. It comes upon you when it does. And you walk differently. You do life differently. You’ve changed. To follow my analogy above, you’re blind. And it’s not going to change. I can’t go back to who I was. I never will. So how can we learn to open our doors to all people, not just the seeing people? How can we make space for deeply grieving people? How can we learn to weep and mourn well together? To lament, which I’m learning is grief directed to God? I could make a list of things that have not been helpful and what has been helpful thus far, but perhaps another time. Everyone I have talked with or interacted with as I’ve been “blind” has had wonderful intentions, and I see that. At some point I would love to help us grow in joining each other in our grief and sorrow.

So here we are. I want to close with giving you an idea of what my days are looking like and what we’re heading toward. For my Jesus-loving friends, please keep my mom and all of us in your prayers. She’s going through what I consider as close to hell on earth as she’s going to get. She’s in constant pain. Her pain meds keep her at a 6-7 level at best (and yes, I’ve been messaging and calling and on top of the pain management discussion with her care team). This type of pain is normal for oral cancer at her level, so sadly she just has to make it through as best she can on her current pain meds (she’s on three right now). We don’t know the stage of her cancer yet, but should in a couple weeks when her pathology report from surgery gets back. What we do know is that she went from being able to talk clearly to not being understood in a matter of three weeks. Her tongue is now mostly immobilized. She’s on a liquid diet of puddings and protein shakes. Eating and drinking are a struggle. We’ve just received bloodwork back that shows she may be dehydrated, so tomorrow’s adventure is getting her IV fluids. She’s not able to sleep more than an hour or two at a time. As you can imagine, the lack of sleep, emotional turmoil, implications of the cancer, and pain are playing a huge number on her ability to cope and her rational thinking. Her surgery date is 1/5, and it will be a 6+ hour surgery in the OR, removing whatever portion of her tongue that contains cancer, and reconstructing a mound of tissue where her tongue was, along with the lymph node removal and feeding tube & trach placement. Her hospital stay should be 7-10 days depending on her recovery, and then if she’s well enough, she’ll come live with us while I take over her home care. She may have a trach and G-tube in at that point, so I’ll be trained on how to feed her and maintain her trach. Because so much of this surgery is dependent on what is currently going on in her body, we don’t know how long her recovery will take. Best guess is 4-6 weeks out from 1/5, she’ll start radiation. Right now so much of my days are getting ready for me being with Mom full-time, organizing life for our home to run without me for at least January, communicating on Mom’s behalf with Drs and other appointments, and helping her through one day at a time.

So with all that said, this is my new season. This is my new normal. The bad dream that doesn’t go away has started to feel like my everyday life. It feels a little less shocking than the first few weeks, but every day gives us something new. I’m learning that helplessness is a normal feeling for the caregiver of someone with cancer. It’s a most awful thing to watch someone you love suffer and to not be able to alleviate it.

Some descriptions of this new season:

1. I’ve never been on my phone so much in my life.
2. I’m having very intense and weird dreams.
3. I’ve learned that you can feel Christmas joy and dreadful agony in the same day.
4. Mom and I can still tap dance together.
5. I am capable of doing hard things, things I never thought I could do.
6. Crying out to God really does help, even when circumstances don’t change. He changes you.
7. The suffering “blind” people make themselves known, and they surround you with all the love and prayer and presence that your soul needs. They just know what to do and say and not say, because they’ve lived it. It reminds me of how Paul says that we can comfort others in their affliction with the comfort we’ve received in ours. I’ve received that comfort. Thank you to our faithful comforters, and for reaching out to us while you are still hurting, too. I want to be like you.
8. I’ve discovered there’s a whole other type of music out there for grieving and lamenting people, and I love it. It’s what my soul needs to hear, not that peppy stuff right now.
9. I really married up. My husband has been a rock through this whole thing.
10. Life is so short and unpredictable and out of our hands. There really is a whole level of peace I’m experiencing knowing that God is holding all things together, even though I have no idea how he will bring good out of something so horrific. This is faith in action, being sure of what you hope for and certain of what you do not see. I don’t see how God is good right now. I don’t see how he loves my mom. I don’t see why he doesn’t just lift this burden since he’s capable of doing it, and he isn’t doing it. So I cry out to him and I work to trust who he says he is when I don’t see it or feel it. I think that’s faith. If I didn’t believe in him, I wouldn’t cry out to him.

If you want to help us with any meals, we’d really welcome them. PM me for the link.

If God prompts you to help in other ways, feel free to reach out to Greg or myself. I will not be very available for awhile, so Greg is probably your best bet.

Until next time. Thank you for reading and caring and for being part of our lives. It’s really impossible to do this alone, and a big part of how you can help and walk with me right now is the acknowledgment of my pain. I’m “blind”. It doesn’t help to have anyone ignore that or gloss over it. I’ve changed. I’m in it. Knowing you see me and you hear me is tremendously helpful. I don’t need advice or your story of how it all worked out for you. Maybe I will at some point, but not now. I need what one dear sister offered me on Christmas Eve. She saw me, came up to me, told me her heart was aching for me, and she prayed. She had been through this valley in her own life, but she didn’t tell us all about it. She was present with us, she cried with us, she prayed with us, and hugged us. One of the best presents I’ve ever gotten.