I have another short window of time to process, and I left my journal at home. Thank you, online blog.

We’re in Swedish Issaquah. We left the apartment at 1:30 for a consult with her oncologists about the swelling. A few hours later we were sent directly to the ER. A few hours after that, Mom was admitted for observation and more consulting. It’s our second night, and thankfully Mom has a few moments of reprieve from sleep. My job here has shifted, as the nurses are taking over meds and feedings; however, they don’t know Mom as well as I do, so I’m offering my input as needed, helping more with the comfort side of things, and being her voice and advocate to help her get what she needs. By the way, good-ish news: we’re probably heading home tomorrow with antibiotics. The experts believe the swelling is related to radiation, and she will be able to continue treatment. One more dose of chemo, and a few more weeks of radiation, and the treatment phase will be over.

As we catalogue this journey, however long it is and wherever we end up, I want to remember a few things. Over the last four months, I’ve learned so much from this caregiving role. More to come, I’m sure. I watch Mom suffer every day. Some more than others. ICU post-surgery and this season of nausea, exhaustion, secretions & swelling from treatment have been the worst so far. I see her go through all this pain, and I’m very aware that while I can imagine what it must feel like, I don’t know. It looks awful. It looks unbearable. I hear from her how she feels. In some ways I can help (grind up another anti-nausea and shoot it in the PEG tube). In some ways I can’t. It is one of the most helpless feelings in the world.

One lesson I’ve learned is that I can’t be both a daughter and a caregiver. Of course I am both, but I can’t act as both. When you wear both hats, at this level of caregiving, you don’t have the capacity to be both. I could either be a daughter or a caregiver. So I am the caregiver, and at times, I get the privilege of experiencing that I’m a daughter to my mom. But those moments are rare these days. So as I see Mom suffer, and I have no ability to alleviate it, as a caregiver, I ache. Somewhere in there, as a daughter, I know there is deep grief that my mom has advanced cancer and is suffering in physical and emotional ways. I know it. Sometimes it has burst out of me. More often than not, though, since the physical burden is so high, I barely have time or space to feel that grief. It’s not time yet. I’m still on the battlefield. The caregiver role is a consuming one. I remember feeling strong fear and anxiety about learning to do in-line suctioning on my own mother. What if she starts choking and I won’t be able to clear it? What if she dies on my watch? Those were some of my spoken fears before January. Fast forward to now, there have been multiple times Mom has been choking on her secretions, and I’ve pulled out my catheter and gone in there and cleared her with no anxiety whatsoever. Calm and cool. Go figure. Didn’t see that one coming. And my support group has been marvelous about addressing my second fear of Mom dying on my watch. If she goes, she goes, whenever God takes her. And if it’s on my watch, it will be an honor to walk her to Jesus.

That leads me to another lesson. My job is not the outcome. My job is faithfulness. My job is to hold the line. My job is to fulfill this role as a caregiver as long as God gives it to me. My job is to do the best I can with my mom, just as I would with anything else I’ve been given. As long as I am doing that, I leave the outcome in God’s hands. I don’t have to fret about when and what. That’s not my problem field. If I’ve been faithful, I’ve succeeded, whatever the outcome is. Doing this season well does not mean my mom is healed from cancer. It will not be my fault if she isn’t, and it won’t be due to me if she is. Yes, I know I keep her fed and medicated, and I’m being used to care for her. I know quality care makes a difference. But it does not make the outcome. The cancer is out of my hands. Her final day, whenever that is, is out of my hands. It’s a very relieving and peaceful thought to rehearse.

One thing I did not expect was how integrally tied to Mom I am. I knew she would need me (or someone else in this role) during surgery, treatment, and recovery. Neither of us understood the extent to which she would need help. The doctors were pretty vague, as I’m sure most patients are different in their recoveries and responses to treatment, anyway. When I see her struggle with nausea, or cough until she vomits, sleep upright in a recliner, struggle seeing her own reflection in the mirror, being told what to do by 15 different health care professionals and feeling overwhelmed by it all, be voiceless, give up eating and tasting all foods (except that certain anti-nausea drug that tastes like burned rubber), live with a trache and the ongoing secretions, feel a heavy “2nd chin”, endure radiation treatments (I could go on, but you get the idea)……..I think nothing can be as hard as what she’s going through. I think how amazingly strong she is. I see how God must be holding her up, because I would have collapsed a long time ago.

Then this last week, I noticed something else. She and I are both suffering, but in very different ways. It’s hard to compare them. In fact, it’s best we don’t compare them. Placing your suffering next to someone else’s is not helpful to either party. Yet I was doing so. I was looking at hers, and minimizing mine because hers seems so drastic, so monumental. This week, it’s as if something started unfolding in me, blooming like those gorgeous spring blossoms I see on the trees on the way to treatment. I saw that I’m suffering, too, and it’s drastic in its own unique way. And comparing mine to Mom’s was dismissing my own cross God is giving me to bear. It wasn’t helping me bear it. I was fighting my feelings, fighting my struggles, trying to dismiss them because Mom’s were more important. And as you can imagine, in doing so, the struggle and the pain kept building and building, and I was becoming more robotic as a person, trying to function and breaking down. But this week, as I started realizing my suffering is valid, I began naming it and acknowledging it. I began crying more. Usually at night, one of the more quiet times of my day when I am alone. Crying about missing my family. About how much I took for granted. About the intensity of the season not letting up. About my disappointments and losses. About my fears. About the distress of watching Mom in so much pain. About wanting someone to take care of me. I’m still in process, but feel a lot more free as I give myself space to suffer while helping my suffering mother. And strange as it feels, acknowledging it helps me be a better caregiver to her.

Practically, I need to remember that if/when Mom goes through cancer recovery, I will also need my own caregiver recovery time. I’m saying this so I remember to actually plan it. Knowing me, this could easily drop down on the priority list.

One of our social workers says that the caregiver is the harder role out of the two. She says it’s partially because we are awake for all of it, and we are often helpless to lift the burden from our suffering person. I can’t say I agree yet (it’s comparing them again!), but it helps me understand why I’m feeling the way I do. Why an anxiety attack sometimes feels like it’s just around the corner, or why I have no energy to handle a simple conversation. Instead of saying one is harder than the other, I prefer to see it as two sides of the same coin. The person with cancer and the caregiver are both suffering. In very distinct, different ways. They each need help and support. That help and support will be individualized for each person. Two sides of the same coin.

In one disparate way, Mom and I are complete opposites. If someone gets trained in (and it’s a good amount of training!), they can take my place. I can have a day off. Mom can’t. Not one of us can take her place for a day. I can’t step in and bear her pain for her while she walks away, trach free and regains the ability to eat. It’s one of the things I wish I could do the most. I have discovered, though, there is a greater comfort I have when I mourn that I can’t give her a day away. Someone did step in her place for her. Someone did bear her pain. Someone is holding her up who gets it like none of us ever truly will. And she knows him. And one day, because of his suffering, the voiceless will have a voice again, and the tongue-less will have a tongue. And she will eat again, and feast, and rejoice, and these days will be far, far gone. It’s not a wistful, “wouldn’t that be nice”, comforting platitude that sounds great but has no weight. It’s a sure promise. Book of Revelation promise. I cannot WAIT to feast with my mom one day. I’m already dreaming up the menu, as I prepare her syringe full of nutrition. Just imagine.*

*I have to insert here: me remembering and rehearsing this truth does not mean this is what we need texted to us or thrown at us from afar. We’ve been met with more religious platitudes this week in the midst of one of the more difficult seasons, and they’ve been extremely unhelpful. Like I’ve written about before, well-intended and so unhelpful. It feels like they’re coming from a place where the person couldn’t hold the grief & pain we are in, and to help themselves feel better, quoted truths to us about God. I had no energy to address this in the moments, so I nodded and let them pass. What I wish I had had the energy to say is, “We agree theologically with you about those truths, but they are so disconnected from where we are! Empathy was completely missing, and when that happens, the platitudes cause pain, not comfort. Learn to grieve with us first. That offers so much more comfort than “God is good” statements.” And as always, thank you to our friends, to the ones who grieve with us and encourage us from a place of empathy and understanding. Your words are so needed and so helpful. I continue to pray for each of you.