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.

To remember what this season was like, here’s a typical day out of my week during treatment. This was yesterday (Thursday, 3/21). I’m currently living with Mom in her Issaquah apartment; Greg is living in our home in Des Moines, and the kids are going back and forth between us. I have them Wed-Sat pm, and he has them the rest of the time. All feedings, meds and liquids are via PEG tube.

Wake up at 7:30am. Hear Mom coughing and suctioning in the night, but she didn’t ring for me, so I got to stay in bed all night. Help the kids with breakfast. Prepare Mom’s 8am feeding & meds. 8a-8:20 feeding. Apply facial creams to her radiation site to help heal the burning. Teach Jonathan how to handwash breakfast dishes. 9am – eat breakfast. Suction Mom’s trach. Dump out water & secretions from machine and wash canister. Get dressed. 9:30a – prepare to go for a walk, but nutritionist calls to talk about possible change to her diet. Talk with nutritionist for 30 minutes, find out why insurance won’t cover a healthier, natural formula. Figure out next steps. 10a – prepare 10am meds and water and feed Mom. Write down that you need to schedule her follow-up with Dr. Kim. Text Keith to see when he’s coming over for trach care today. Read Titus a few stories. Prepare the kids for their time while I’m gone at radiation and hydration. Suction Mom again. 11am – find out there is more paperwork to fax to long-term care insurance. Fill it out. Try to figure out the scanner. Mom helps. Scan the documents and fax them through. Faxes fail. Resend. Fail again. Resend once more. Faxes go through. Call the home care company you’re trying to work with. Talk with the care coordinator and schedule a few appointments for next week. Good news: there is a caregiver who can be delegated to handle trach, peg and meds! Will need to onboard her next week. Suction Mom again. Lots of secretions. Help Jonathan and Caleb make copies for math. 11:45a – prepare the 12pm feeding and pack the suction equipment, creams, gloves, water, cups, syringes, cloths, meds for 12:30 departure. Pack a few snacks and water for me. Running out of time for a shower. Push it to tomorrow.

12pm – Feed and meds for Mom. Last instructions for kids. Keith comes, picks up the trach supplies while we gather everything else. 12:35p – Leave for the hospital. Walk across the street with Mom and Keith. Check in for 1pm hydration appointment. Once settled, I ask Keith if he can hang with Mom while I go for a walk. He covers me for 45 minutes – I walk around the hospital and get some cardio and fresh air. Come back, find Keith and Mom finished with trach care and coloring. I join them; 2 minutes later Mom gets another coughing fit, needs suction, fanning, peppermint oil to help her calm down. Return to coloring. 3pm – Keith leaves.

3:15pm – done with hydration. Pack up and walk directly over to radiation. Mom changes, suctions, and gets called back quickly. I wait. Texting Grace’s ride to ballet and Grace to give her instructions on where to go if I’m not back before she leaves. 10 minutes later, Mom comes back and is done. We pack up, say goodbye to the front desk team, and walk back to the apartment. Home by 4pm. Just miss Grace, but she gets picked up safely for ballet.

4pm – say hello to kids, prepare 4pm meds and feeding. Feed and meds for Mom. Radiation cream round 2. 4:45, figure out shopping list and dinner. 5pm – Greg comes and picks up Jonathan for baseball practice. I suction Mom, take Caleb and Titus to grocery store for dinner. I get there, realize I left my wallet at home, and come back. Scrounge for dinner fairly successfully, put shopping off until tomorrow. 5:45pm – feed Mom. Take boys down to pool, let them swim for an hour or so. 7:30pm – come back upstairs, get boys ready for bed, read stories. Put them to bed. 8:30pm – meds for Mom. 9pm – do dishes. 9:30p – put on radiation cream once more. Prepare 10pm meds. 10pm – meds for Mom. Suction. Prepare syringes for the next day. Write down the next day’s schedule. 10:30pm – get ready for bed. 11pm – go to bed.

4am Friday – get called by Mom because she’s choking on mucus. More suction. Head back to bed. Keep hearing her coughing, but no calling for me. On and off sleep until I wake up at 8:30, realize I’m 30 minutes late for the first feeding of the day. Oh well. Adjust schedule and move on.

This is a pretty average day. No day is the same. There have been worse; there have been better. The highlights were coloring with Keith and Mom, and taking a walk. Low lights are the choking episodes and hearing Mom struggle to sleep during those coughing fits, knowing I can’t help.

Now it’s 10pm Friday and I need to prepare her final meds. Until next time.

Disclaimer: this is a personal processing, cancer care update, journal-type entry. Ways we need help is at the end of the post, if you’d rather skip to the practical needs section 🙂 I take no offense. Writing helps me process, and I’ve not done as much as I probably should have lately.

I’m counting 11/20/23 as the start of this cancer journey, though it was in the works for years previous with issues Mom was experiencing with her tongue. 11/20 is when we got the diagnosis after a few months of more urgently seeking out answers for the increasingly problematic symptoms. 11/20 is when we realized we were dealing with cancer, and our lives have changed. Now we’re in our 4th month. I don’t know what phase to call this next one, but I’m realizing we’re turning another corner. After diagnosis came treatment options and questions. Then came prep for surgery. Then came surgery, ICU, and hospital recovery. Then came discharge and recovery at home. Then came radiation and chemo consults. Then came chemo treatment. Then came moving Mom back to Issaquah. Then radiation treatment. That brings us to the next stage.

I’ve had a good session of respite this week, thanks to Jason flying in from Alaska and his willingness to learn PEG tube feedings and general help and care. Also due to my brother learning trach care so I don’t have to drive to Issaquah every day. A deep breath and chance to recover. I’ve gotten time with my kiddos. Greg and I even got in a date, thanks to Mom gifting us some tickets she couldn’t use. Played in our worship band for the first time in a few months, and said hello to some wonderful people. Greg is giving me this afternoon off, so the breath continues a little longer before this next phase starts up tomorrow.

So…..introducing Phase 9, perhaps? I don’t know. It may not be helpful to give these phases a name or number. I’m learning that suffering doesn’t turn off and on, or have a clean beginning and ending. It is something you walk through, like life. You can’t plan it. You can’t control it. You have no idea when it will “end”. It may not end, but ebb and flow. It’s a journey. It’s why God says we walk through the valley of the shadow of death. One step at a time. It’s a daily, moment-by-moment existence. So we’re walking. And I see a bend in the road. This bend is care for Mom while she goes through treatment, living in Issaquah.

She’s living there instead of with us for multiple reasons: the main one being that her treatment is across the street from her apartment, and she can walk to appointments. When you have at least 7 appointments/treatments a week, proximity is gold. It’s also nice to know emergency help is within a block. Obviously it’s not ideal (as nothing is). Greg and I live 45 minutes away. Her trach needs daily maintenance. Only two people in her world are trained to do it currently: Keith and me. PEG tube feeding on your own is a full-time job, and Mom has other things she needs to do besides feed herself. Sometimes her mucous is so thick, it gets hard to breathe, and it’s scary to be in that place on your own. While the hope was to have a caregiver with her 4x/week (for the days I can’t be there) for 8 hours/day, LTC insurance will only cover half of what we were hoping for with caregivers for Mom. We can’t afford the out of pocket expense of a caregiver, so we’re looking to see if a shorter shift is both 1. possible and 2. available. Along with that, Issaquah is a hard area to staff, and nurse delegators are short, and not many delegators can do trach maintenance. So the pieces are falling into place, and I’m starting to see what the next few months may look like.

Treatment for Mom ends on April 15. Then she needs time to recover. This may take up to 3-4 months (July/August). We have no idea when her trach will come out. Maybe at the end of treatment, maybe after 3-4 months post-treatment. My current goal is to get her through treatment. Then, if she needs continual trach care, at least she will be done with 7 appointments/week and we can move her back to our house if needed. I was able to live with her for the first week after she moved back to Issaquah because my husband was able to work from home. Now he needs to be back in the office three days a week. It feels as if I need to be in two places at once: with our kids Wed-Fri, and with Mom. For this week, I’ll be with Mom Monday night-Tuesday, Wed-Fri during the day, Fri night – Sun night.

So how to get her (and our family) through treatment? Well, if you read 1 Chronicles 19, you’ll see something that amazingly related very strongly to our current circumstances. God’s people are being wrongfully attacked from all sides. Joab organizes the army into two groups: one led by him and one by Abishai. He tells Abishai, “You go over there and fight that group. I’ll go over here and fight this group. If you get overwhelmed, I’ll come help you. If I get overwhelmed, you come help me. We’ll fight with all our strength for God, his people and his cities. And may the LORD do what seems good to him.”

Greg and I are Joab and Abishai. We’re going to divide our strengths to fight for one of God’s daughters. One with Mom, one with our kids and home. We’re going to do this with all our strength and resources. If one is overwhelmed, the other will come and help. And may the LORD do what seems good to him. The outcome is out of our hands. Reading that encouraged me so much. Joab’s faith is what I want. I’ll go ahead and make battle plans, and keep knocking on doors, and trying to use every resources we have. And at the end of the day, God controls the outcome. That gives me tremendous peace. He’s not a safe God. He doesn’t promise my mom (or I, or my family), will come out of this unscathed, or even alive. He promises us much more than that. He promises that he is with us in the fire. He is with us in the valley. He won’t ever leave. He’s with Mom in every radiation appointment when she’s strapped to a board, in every chemo session when DNA-killing medicine is flowing through her veins. He’s with me in the chaos of each day. He’s with our kids while I can’t be. He also promises this life is the worst it’s going to get for us. Eternal glory in exchange for temporary suffering. I’ll take that any day. He’s not a safe God. But he’s good.

The thing Joab and Abishai had, too, was an army. We’ve had an army helping us from January to now. Meals, rides, groceries, prayer. We still need these things. At first I thought we just needed help for January. Then I thought, well, maybe February as well. Then March came and I’m realizing we still need help. It’s humbling to admit that. It’s humbling to be in need for so long. I can only imagine how Mom feels. Yet we still need our army. Perhaps some of you need to retreat and gain strength. Perhaps some of you are new troops fresh for a battle. I know God will send us what we need. Are you up for joining the army to help us? While so much is still unclear, and I tend to live day-by-day now, or sometimes week-to-week, here are a few things Greg and I could use until May:

• Daily prayer. Talk about daily manna. I get it now. I can’t do one day on my own.
• Magdsick home help on Wed-Fri during the day. I may need to be with Mom, and we need someone at home with our kids while Greg is at work. Another option I’m considering is bringing them with me to Mom’s Wed-Fri, though there are complications to work on that end, as traipsing into Swedish Oncology with four children for radiation treatment isn’t helpful to anyone!
• Rides for Grace to and from ballet on Tuesdays & Thursdays from 4:15-8:45p window, for 5:45-8:15p class, starting 3/26. This takes a load off Greg and lets him be home with the boys on those weeknights, giving them a decent bedtime hour.
• We still have grocery help (thank you!!! You know who you are!)
• Anyone in the Issaquah area (or willing to drive there) who is willing to learn how to maintain Mom’s trach and/or do PEG tube feedings.
• Financial support is always welcome to cover the extra cost of gas & take-out.
• There are probably other things we need I am not aware of or have just forgotten. If you see anything or have other ways to help, yes please!

So here we go, making plans, fighting with all our strength, knowing things will most likely change and we’ll need to shift and be flexible and make new plans. And may the LORD do what seems good to him.