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More of the Story – November 2023

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Mom’s tongue had swollen so much she couldn’t speak clearly. Her drool was sporadically uncontrollable, making social situations even more uncomfortable. She couldn’t eat well. Her diet was rapidly becoming protein shakes and puddings. Even swallowing was getting harder. Her right ear pain was worsening, the sore on her tongue widening. We were looking for answers. On Monday, November 20, 2023, three days before Thanksgiving, after multiple misdiagnoses and mistreatments, answers came. It was squamous cell carcinoma: cancer. Stage 4, we were to find out in January. Nine days later on 11/29, I was there at the surgeon oncologist’s office when the bomb went off. That day is one of the traumatic moments I’ve been working through in therapy. We walked in, knowing it was cancer, but we were clueless about what treatment or options looked like.

It was worse than we could ever have imagined.

Mom would need a glossectomy (removal of her tongue). How much was still unknown, left to the surgeon’s wisdom when he got in there to see how far the cancer had spread. It could be part of her tongue or all of it, the surface level or into the base. Spoiler alert: it was all of it. They would then take tissue from another part of her body (it turned out to be her leg) in order to rebuild a mound of tissue in her mouth to resemble her tongue. She also needed a neck dissection to remove lymph nodes (a large incision from underneath one ear, along the jawline to the other ear. Very dangerous and delicate. The swelling would be intense, as tissue from her leg would also be added to the neck dissection area as well. This meant a tracheostomy in order for her to breathe, and a PEG tube for her to eat and drink. As soon as she recovered from surgery, which was supposed to be the easy part, she would need to immediately start radiation and chemotherapy in tandem, to give her a chance of making it. Mom would need someone caring for her 24/7 for the trach and the PEG tube, and incision care after the surgery. PT and OT to get stronger, eventually speech therapy to try to learn how to talk without a tongue. She would most likely need her PEG tube for the rest of her life.

We were given this information within a few minutes. I think we were both in shock. I was taking notes, as Mom sat there, being hit with it. Her life as she knew it was over. And it wasn’t the first time. In the last four years I had watched her her grieve the end of her 38-year marriage. She struggled with serious depression and will to live, while doing the bravest work I have ever seen: looking at herself and the reasons she has lived the way she lived. She hadn’t gotten up from that massive hit, now here comes another one. This one felt like a death blow. I remember feeling sick to my stomach, looking around for the best place to throw up if need be. I remember dissociating in order to survive. It was very clear to me that I needed to write down the horrible information coming at us. Mom wasn’t capable. I had to get this info on paper so we could process it later. I remember watching Mom’s face, as she began to take it in. She asked a few questions, and as soon as the oncologist left the room, she put her head down in her hand and started weeping.

I didn’t. I went over to her and hugged her. I sat there with her, feeling sick. I don’t think I said anything. What do you say when that happens?

In the next hour, Ryan the PA came in and helped us process what we just heard. I will always remember how he cared for us by giving us the time we needed to ask our questions. One thing Mom asked from our list of possible questions was what would happen if she declined surgery and treatment? He was very frank, and said Mom would face a slow, painful death. He acknowledged how overwhelming the news was. He connected us to our first social worker. When we left, Mom told me, “Ryan earned his paycheck today.” I agree.

One of the things Ryan asked me was if I had the capacity to care for my mom’s trach and PEG tube. I said yes immediately. I had no idea how to do it, but the staff was very clear that family members or loved ones could learn. The experts train you in hospital. Mom looked at me and asked, “Are you sure?” She had a nursing degree and probably knew much better than I did what I was agreeing to. I said yes. I didn’t need to think twice. And despite the trauma that come with that decision, I’m still honored and grateful that I got the chance to care for her in that way. In the moment, though, as soon as I said yes, there came a heavy fear that my mom might die on my watch. What if I do something wrong? What if I can’t clear her airway? What if she dies, and it’s my fault? It felt like too much to bear. But I had to figure out how to bear it.

We drove home to my house. We had carpooled that day, Mom driving to me so I could take her to and from the appointment. We were still digesting all this in the car on the way home. There we were, the same car, the same people who had driven to the oncologist, but everything had changed. I remember at one point trying to relate to her, and saying something pretty stupid, considering the situation. I said, “Well, I know what it’s like to have to not eat certain foods because of my gingivitis problem.” True, and so pointless and unrelated to what we were taking in. Unhelpful, and I’m sure painful to Mom, though she didn’t say anything about it. I didn’t know what to do. With the exception of a few spurts of conversation, like Mom asking me to tell everyone because she wasn’t up for it, we silently kept taking it in.

It was ugly. Horrific. Traumatizing. To have your only options being a slow, painful death aided by whatever medications available, or a massive surgery that would best case leave you unable to speak or eat the rest of your life. There was nothing else. No other choice. To realize you had been misdiagnosed for months, maybe years. To hear from your oncologists that one of the meds you were taking to help the tongue issue was actually making it worse. To kick yourself for not pushing for a biopsy sooner. To know you were going to be a tremendous burden on your daughter as caregiver. To wonder, if you even made it through surgery, what life would look like afterwards. At 63 years old.

After we got home, Mom collapsed on our couch. She called a friend, and started crying. I stepped in to take over the communication for her. It was yet another moment that day where I put aside whatever I was feeling in order to function for Mom. It became my norm: Mom needs me, so I will do whatever I need to do for her sake. Whatever I was feeling or needing would need to wait. It helped me function, and it also hurt me and Mom (more on that later). After Mom got off the phone, she looked at me with all her tears and feelings at the surface. She told me, “You know, it’s okay to cry.”

In that moment, I heard her words like you hear an echo from the other end of a long tunnel. It registered as true; it didn’t touch me. I had already dissociated from my feelings so strongly in order to take notes, say yes to PEG tube, trach and 24 hour care, drive home, and communicate the news to Mom’s circle of support, that I didn’t know how to both feel and function. How could I cry and also do what needed to be done? How could I face the horror of what was certainly coming, if I allowed myself to feel the horror? I couldn’t do it. I looked at her, and I tried getting in touch with my feelings, but I didn’t know how.

And while I understand that was a normal response to trauma, and while I don’t blame myself in the least, I look back now and I regret it. I wish I could have fallen apart with my mom. I wish I had thrown up in the oncologist’s office. I wish I had cried with her. I wish I had learned how to care for her and grieve with her at the same time. Is that even possible? I don’t know, but on this side of it, I can see ways where it might be. Where you allow the waves of grief to hit, and enjoy the light moments when they come. Where you do what you need to do, but also cry or scream when you need to. Mom did this better than I did in her last 6 months.

This inability to grieve with her kept us from some very valuable conversations, like how she wanted to die, and what she wanted to make sure to do before her life here was over. What relationships needed her attention? What did she need to make sure to tell her loved ones? Who did she need to forgive? Cancer treatment pursues life incessantly, and never talks about the end until it’s clear the cancer has taken over and there are no more options. For us, and for many, by then, it’s too late. When we found out how far it had spread, Mom couldn’t communicate except by hand signals and mouthing. It kept us from helping her prepare to die well. It kept me from more intimacy with her, sharing in our suffering together. We were in it together, going through hell together, with very different roles and experiences in it. There is so much more we could have shared.

It’s never perfect. Like we all are our whole lives, Mom was in process. There were things she wasn’t ready to do. Even before surgery, she and I were working together during December 2023 to get me on top of her finances and legal matters in case she died during surgery. Even in all those appointments, I saw her reach her limit. At one point, in a meeting with a banker, she said she felt like she was dying, and she couldn’t handle it. She had to stop the preparations. Getting my name on her accounts, giving me her passwords and codes, etc. made her so uncomfortable. She wanted so desperately to live. I couldn’t force her to plan for dying. We both were where we were: in process. And I don’t fault either of us for that. I grieve for the missed tears and conversations, and I give us a whole lot of grace for where we were when the bomb hit.

I don’t have a bow to wrap on this. It doesn’t need one. While they make us humans a lot more comfortable, pretty bows or happy endings are not reality for so many of us. This story doesn’t have a bow. It’s a horrible chapter. I’m okay leaving it undone. It’s not the last chapter.

More to come later.

Grief in Year 2

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If this is helpful for you, I’m grateful. Reading other’s processing through their suffering is thirst-quenching for my soul these days. So I’ll share some of my personal processing in the hope that it might encourage someone else.

What does life look like now?

In Robert Moll’s book “The Art of Dying”, he includes wisdom from Susan Zonnebelt-Smeenge. First Rob says, “Proper grieving takes time, and taking that time recognizes the importance of the person’s life. When two people…….have intertwined their lives together, it takes time to undo those ties. The grief process acknowledges the depth of the relationship.”

“Any person who loses a loved one needs to recognize, Susan says, “I was attached to this person. I walked through life with this person, and this person has interwoven his or her life with mine. I’m hurting in all the ways that this person was in my life. I have to make some really major adjustments.”

I have a deeper realization that I will continue unpacking, processing and grieving Mom for the rest of my days. This is a snapshot of 17 months after the fact. It is never done. We don’t move on. We continue moving, changed forever by grief. After the first year marker, I struggled under expectations that now all the firsts were over, grief would subside. It would be tamer. I thought I would struggle less and the waves would settle down. At the end of the day, I thought I would hurt less. I desperately wanted (and still do want!) to hurt less. While a lot of this has happened (grief is tamer, and the waves are less violent), I am also experiencing deeper and more painful grief. In many ways, I’m becoming able to hurt more. Part of this is because of the uniqueness of our story (ex: who Mom was to me, our relationship, my age and circumstance when she died, and the insane season of caregiving that preceded her death). The first year for me was full of the firsts, yes. It was also full of unaddressed trauma, executing her will and dealing with her belongings, coming home to grieving children who don’t know what to do and lost their mom as she was, a husband who hung on to single parenting so I could collapse but is also grieving and wounded, learning about grief and trauma, dealing with continuous health issues due to intense caregiving and loss, and more. All of these things are ongoing. It was, and still is, complicated. Layers upon layers. I remember one person’s statement to me at church after her funeral: “At least you’re home now, so life can get back to normal.” I think I smiled and nodded at her, not knowing how to explain that the old normal is gone. Our old normal was buried with Mom. It’s never coming back.

This second year has ushered in the ability to continue grieving with more perspective. The trauma counseling has helped move the trauma so the grief is more free to flow. Craniosacral therapy has been a huge help with this. I had no idea how much grief is held in our bodies. One example is my right lung. A week or so after Mom died, I went down with my first bout of many of fever and congestion. Side note: I think I got sick on average every three weeks for the first six months. After the fever broke, my right lung hung onto a hacking cough. Over a year later, I still have it. After multiple doctor visits, bouts with antibiotics, and x-rays to rule out cancer or other complications, my naturopath explained why right lung congestion is typical and normal for grief, and gave me a way forward to address it. She’s worked with my therapist to help me grieve well. It sounds crazy, as I told my kids the other day, but along with certain supplements, as I learn to welcome the waves of grief and lean into the pain, letting the tears come, my right lung has become more clear.

Some days I just want the pain to stop. It takes so much encouragement for me to keep leaning into the pain. I want it to end. I’m tired of hurting. When I’m “doing well”, it means I’m allowing myself to feel the pain I need to feel in order to grieve. Doing well means feeling pain. Pain I wasn’t able to access in the chaos of the first year. My cranio appointments have been superbly helpful with this. It is one of the few spaces in my life where my grief is welcomed. My therapists understand how much strength it takes to feel this kind of loss. The hard work I do isn’t visible. It’s not attractive. Like I said, I don’t like living with continual pain. But it is incredibly important.

I get why so many of us are terrible companions to the hurting. People quickly become experts at avoiding feeling this way. The TV shows or other distractions are continuously beckoning, signaling “RELIEF” to you. Christians in particular can be experts at using parts of the gospel to avoid grief or attempt to “speed it up” in others. Again, quoting Rob Moll (pg 132), “Mourners can use heaven as an excuse to avoid necessary pain, pretending that the loss of death isn’t real because we will be reunited with our loved ones in heaven. Christians sometimes impose a kind of ban on mourning, using the hope of heaven as an excuse to avoid being confronted with someone else’s pain.” The trouble is, avoidance never delivers healing. When I turn the show off, the pain is waiting for me. Christian positivity isn’t any better. Even though it spouts some truths I do believe about Jesus and life after death, the toxic positivity pushes me both away from grief and away from God. If I ignore grief too long, it grows and affects all areas of my life. It appears the only way out is through the pain.

It’s exhausting to contemplate. I can’t handle more than one day at a time.

Trauma connects to trauma, so unsurprisingly, as I address the trauma moments of caring for Mom and watching her die, older traumas are also rising to the surface. They ask to be addressed. It feels like the reward for pursuing health and recovery is more pain. More fire. You’re obeying God? Great. Here’s more pain. My therapist calls it a gift. Deep down, as much as I fight it, I agree with her. Addressing these wounds is ultimately a great and wonderful thing. It’s one way to take up my cross. The rewards will be worth it. She also has helped me see that I have a choice of how much I address and when. She knows I went through hell before Mom died. She’s listened to my story of what it was like. The trauma is there. It’s waiting for me when I’m ready to look at more.

People are so interesting and messy. Myself included. The most common thing I’ll hear now in regards to my grief is something like, “It’s good to see you smiling again.” Or, “You look great.” Apparently I look better to people. This coincides with a lack of questions about my grief. The unwritten message blares out to me: “We knew you were grieving, and didn’t know what to do with you. Now that you’re smiling more often, you’re obviously fine, and we won’t mention your mom or that horrible season again.” They don’t understand that I’m continuing to grieve, that functioning doesn’t mean I’m fine, or how I need to talk about my mom and the suffering we went through. The only people who ask my how grief is doing now are the ones who showed themselves as helpers at the beginning. My circle of support knows, and asks, and has no timeline on my grief. Everyone else has moved on. While I still ache for this enormously significant part of my life to be acknowledged and seen, I understand better that not everyone is able to. I’m thankful for the small circle of people who do. I am very passionate now about helping others in the same way I have been helped.

The small moments in life I took for granted are now very precious. I do smile and laugh, along with crying and groaning. My time with my kids is precious. Still draining as it ever was, but I see the value of it so much more deeply than I ever have. Joy and sorrow are definitely related. I think of them as fraternal twins. They don’t look alike, but I’m convinced they are joined at the hip until our final tears are washed away. I see it everywhere now: in my own life and in others. I saw it a couple weeks ago watching Robert Irwin’s dedication dance to his mom on DWTS. If you haven’t seen it yet, watch it, and watch the preparation of his dance. You see joy and sorrow intermingled. I cannot live now without opening the door to both. I can’t divorce one from the other. Living fully means loving and losing, and I am learning to welcome both, however painful it will be.

I still wrestle with God. Funnily enough, when I “have it out” with him, he and I get closer. Go figure. I have never felt such a sense of welcome from God when I bring him my messy self. It’s so clear he wants me to bring it. All of it. So we wrestle. My prayers are full of cries and questions and anger and “Help me” and naked honesty. I’m learning it’s worship. Vaneetha Rendall Risner agrees. In her book, Walking Through Fire, she shares how lament became her language in the midst of her compounded losses (pg 111), “….my brutal honesty pulled me toward God. And the closer I was drawn, the more my lament transformed into worship–and even trust. Actually, it wasn’t transformed. I learned that lament didn’t need to be transformed–lament itself was an integral part of genuine trust and worship.”

Yes. Amen, sister. Thank you for putting it so well.

There’s more. There’s always more, but that’s a decent snapshot for now. If you followed along, I thank you for listening.