It’s closing in on 5 months since Mom’s surgery and my role as active caregiver. It’s 6 months of a heavy new load. It’s 3 months of me living apart from my family and seeing my kids and husband only occasionally. There have been different parts to this journey so far, and I have no idea what’s to come, but it helps to write through the process. Perhaps, one day, looking back, I will see a pattern. I will see God at work. I will see growth. I will see movement. Or maybe I won’t see anything. Regardless of what I see or understand, it’s one of those days where I need to write what I’m experiencing.

Mom is at a low point. She is feeling the full effects of chemo and radiation, though both are officially done. So she’s in recovery, but other than not going to treatment, it feels very similar. The low point includes continued nausea, incredibly low energy, secretions and suctioning (last night it was about 5 times. I’m still in my jammies at 3:16pm), needing supervision walking to the bathroom, help getting up, help showering, help dressing. She’s on 2 LPM of continuous oxygen. It’s a struggle to get her feet up with her difficulty breathing and her nausea, so we’re constantly fighting lower leg edema. Her back, upper and lower, are in continual pain due to sitting in a chair day and night. I often put on essential oils to help, use a heating pad, and massage her multiple times a day. Her interactions are very minimal and brief. She doesn’t have much energy beyond existing. I wash dishes/syringes at least twice a day. I put on her radiation creams 3x/day. Feeding and meds happen all through her PEG tube, so I am shooting something in her every 2-4 hours throughout a 24hr period. I am not able to leave her alone, save for quick trips to the mailbox or to pick up something a gracious friend dropped off. Lately I have been able to step outside for walks, as long as I stay within 2-5 minutes of the apartment. I call our kids a few times a week, and my husband about the same amount of time. Often we get cut off because Mom needs something. I re-order oxygen, trach supplies, and food, trying to keep a good inventory of each. Laundry is a relaxing chore, as there’s not much with the two of us. Lots of rags to sop up spills from feeding or to absorb secretions. I order dinner through DoorDash, and rate the dashers who are able to actually get it to the apartment door without calling me with 5 stars. Her suction device needs cleaning once/day, along with changing her trach collar, cannula, gauze, etc. Three times a week we are going to the hospital for 2 hour hydration appointments, and follow-ups with her medical oncologist. This outing takes a lot of coordination. I need to pack up a bag with syringes, cups, water, rags, gloves, medi-mat, meds, sometimes food depending on the timing, so I can give her her meds/food while she’s hooked up to hydration. Then I need to pack up her suction machine and supplies, get a new oxygen tank hooked up, switch her to portable oxygen, get her in the wheelchair, lock up the apartment, and head over. Even though it’s a lot of work, I love seeing the nurses and staff at oncology. They are the highlight of the visits every time. On top of this load there is the load of being Mom’s voice. Lots of legal forms, Social Security, insurance, scheduling, phone calls, faxes, working to advocate as best I can.

It’s the heaviest load I have ever felt. I am carrying Mom while she can’t carry herself. I know I can’t keep this up long-term. Physically alone, it’s draining. I barely get time to think about how I’m doing emotionally. Once last week I went for a walk, and started crying as soon as I got outside. It took the rest of my walk to figure out why I was crying and to work through those feelings. Thankfully, I did. Wasn’t what I was expecting, but it was probably what I needed.

Friends pick up prescriptions for me, groceries, library books, whatever I need that I can’t go out and do myself. Amazon has become such a help with getting supplies to us. I wish I could tell everyone what their help means to me. There’s a whole host of people helping my husband and kids while he’s single-parenting, trying to work and be the steady adult for them while I’m gone. Oh, it was heart-rending to hear my four-year-old on the phone ask when Mommy is coming home, and hearing him try to work out how much longer he has to wait. My heart aches to see my babies and hold them again. I think the first year after I return home will be lots of cuddling.

We’re told this down season will last 2-4 more weeks, and then Mom may suddenly perk up with lots more energy. It’s not a linear improvement; it’s often a quick and sudden change. I have respite coming this Sunday, then another possible one in later May. It’s also possible Mom could move in with our family in June, once we don’t have to be at the hospital so often. I’m honestly not sure if that will be the best way to go, as I don’t know what her therapy schedule and recovery schedule will look like. Perhaps she’ll be with us for awhile until she builds up her strength; perhaps we will hire a caregiver for that recovery time so she could stay here. It’s too far away to tell, and I won’t waste unnecessary energy thinking about something I can’t deal with yet. There’s enough trouble for one day right in front of me.

I wish I had the energy to call my friends more. Whenever I get a spare moment, I usually use it for things like a shower, lying down, eating, exercise, or calling my hubby and kiddos. I wish I had more time but I don’t. I hate feeling like I’m being a bad friend, and yet I know this is where I am and I can only be where I am. Thankfully I’m seeing my good friends shine out like gold. They get it, they’re not asking anything of me, and they’re here for me no matter what I have capacity for. One of the things I have been realizing is that hard times really reveal who your friends are. Who show up for you, check in on you, extend so much grace and love, don’t give up on you. You end up becoming closer through the difficulty. I am thankful for Erica, for Jena, and for Gail. It may not seem like much, but you three in particular have encouraged me to no end, just by being there. I am also thankful for the army holding us up in all the various ways you do. I saw from my caregiver support group today that what I’m going through, even in the cancer caregiver realm, is an incredibly heavy load. Hence the need for all the support from others.

I’m guessing in a month, our “normal” will look a bit different. I hope so. Hope is something that keeps me going when I don’t want to wash one more syringe, or when I’m sick and tired of the repetitive tasks, or when I see Mom so beat down. There is hope that it won’t be like this forever. There is hope, not that life goes back to normal, but that God will use such a heavy time to do something good. Most of my hope lands in the eternal category, as I’m realizing that putting my hope in temporary things is simply foolish, like storing my good chocolate bars outside in the sun. This really can’t go on forever. At some point, good will win over evil. At some point there is relief. There is rest and glory waiting. One with no more pain, no more tears, no more suffering. And angels and an entire host of suffering saints are watching and, I hope, cheering us on to not give up. To keep going one more day. I know I would regret hitting the escape button on a fire God intended. If he puts me through it, it’s for a reason. I want the reward from the trial. And the only way to get there is through. Like the cross.

Is there a year retreat available after this season is done, where I can do my emotional processing of this whole ordeal, cry whenever I need to, rest and sleep, enjoy something beautiful, and reconnect with my family? I doubt it; it’s just what my heart wants. If you know of one, call me.