Book Review and Author Interview: Loving Your Friend Through Cancer with Marissa Henley
Marissa Henley is a cancer survivor who writes and speaks about faith, friendship, God’s character, and suffering. Her book, Loving Your Friend Through Cancer is what I fondly call the textbook on how to be the most supportive friend you can be to your friend in crisis. Marissa shares how her amazing community walked with her through cancer but the practical lessons inside apply to your friend with any severe or chronic suffering. It could have been titled, Loving Your Friend Through Lyme’s Disease, or Loving Your Friend Through Divorce, or so many similar titles.
After my close friend was recently diagnosed with Stage 4 Cancer and her friends started calling me with questions, I knew I needed to talk with Marissa. This conversation is for you, dear friends. May it help you as you seek to bless and support your suffering friends.
One more thing before we start chatting… This book is so good, I truly believe everyone should read it. I’m putting my money where my mouth is. Read all the way through for a surprise.
I’m thinking through the timeline of our story, Marissa. Has it been ten years since you were diagnosed with cancer? Nine years this month. Praise the Lord! It’s exciting. And I want to just appreciate that and not just look forward to ten. Because I really I want to say, “Do ten! Get to ten!” I don’t want nine, I want ten. I get it. When I got to a year after my surgery, I thought, “I can’t believe I’m still here.” That feeling that says, “Oh my goodness, I’m still here,” just doesn’t go away. It’s amazing. I know that you get this, it’s such a gift to know to appreciate all the things. Especially the first year or two, every time I went to a piano recital and I didn’t have a bag of chemo dripping attached to me or the year I got to show up to the awards thing at school that I had missed the year before … each of those things means so much and feels like such a milestone.
What else has been going on in those nine years? A lot of spending time with other people with cancer. I tend to be the person people call when they’re having a biopsy and something suspicious is there and they aren’t telling everyone that they are having a biopsy but they are calling me. I don’t know if you have that too. I do. Sometimes I’m just like, “Oh my goodness. This world is so broken. I just want Jesus to come back because it gets so overwhelming.
But it’s a privilege to be able to walk alongside people, whether its cancer or their husband’s had an affair or whatever,… once you’ve been through suffering like that and you get it, you’re not afraid to be the person who shows up for whatever the crisis is. I think, before cancer, I used to pull back, I wouldn’t know what to say or I wouldn’t know what to do so sometimes I would stay back. But now I’m like, “I’m not afraid of that. I’ll go hop into that mess.” So, I’m thankful to be able to do that. But it also can be heavy sometimes.
I understand all of that. My husband and I started, well he actually started it… he said, “Let’s make a pact Nicole. We’re never going to ask somebody, ‘What do you need?’ We’re just going to show up.” He was the one getting all the calls. I was the one in ICU. He was saying, “I don’t know what I need. I need everything!” To be asked another questions was overwhelming. We’ve had a chance a couple times since then to just show up. Just show up in the waiting room with a coffee. It does change you. But I’d rather be the person that people call instead of have them thinking, “Who am I gonna call?” or, “I don’t have anyone to call.” Yeah, definitely.
In chapter 2 of your book, you talk about Circles of Support. I loved the whole concept and I saw how that worked organically in my own community. Did your friends mostly stay within the structure of the Circles of Support system? Hmm… I did have one or two people who moved inward in the circles because of the way that they showed up for me. I had one friend who probably would’ve been a middle-to-outer circle friend, who so consistently would text me and reach out to me providing that emotional support that she became an inner circle friend through that time. And so I did really appreciate that. An unexpected blessing.
Have you heard of Jen Hatmaker’s Ring Theory? Yes, I think she got it from the same LA Times article that I quoted in the book. It’s: Support In & Dump Out.
The way you describe the circles in your book could be summarized: Know the depth of your intimacy in your friendship and then, Know that different intimacies have different roles. Jen Hatmaker’s Ring Theory is similar but different. It’s: Mom/Dad in the middle, then brothers/sisters, then other family, and then friends in the outer ring. She boils it down to: Good Vibes can come inward, Stress has to go outward. I think we are probably talking about two different issues. What she’s talking about is how you communicate with each other. That when you are communicating with people involved in the crisis, if you are communicating with someone further to the inside you should be only communicating support, not unloading on them about how hard this is for you. So all you should be communicating to someone further inside the circle is “I am here for you. I care about you.” Just support. If you need to ask questions or vent or whatever, you find someone further to the outside. So, I think that is more of a communication issue, where I am talking about more of a service issue. Knowing what kinds of emotional and physical support you should be providing. But, those communication rules still apply. So if someone in my outer circle was talking with one of my best friends, they should be saying “How’s it going? How are you? How can I help care for you as you care for Marissa?” Not, “Oh my gosh, I’m so stressed out about this.” For example, I had someone ask one of my best fiends about my prognosis. So inappropriate. You don’t get to ask that towards the inside of the circle. You get to wait. Just pray.
I love that you brought up that the inner circle people will need support from the outer circle people as well. It’s not that all the support is going to the one person or couple at the center but that the outer rings are supporting the inner ring people who are doing so much. Right. There was so much burden on my parents and my best friends. People were brining my parents food. I was so happy to hear that. My mom came to stay with us for six weeks and my best friends would come to bring me flowers and they’d bring her a Coke. I loved how they loved her. It’s support for everybody.
I’d like to move on to The Pit. Oh man, that is a great word. You wrote a little motto, “This sucks, but God is good and I love you.” I wanted to turn that into a tattoo. Could we just make washable tattoos for everybody? Every guest gets one when they walk in the door. That wording is perfect. Nothing else need to be said. I got that from the most helpful parts of things that people were saying to me. I would tell people some of the most horrible stuff that was happening and they responded with, “Well God is good.” Period. And I’d just have to nod my head, “Yes, yes he is.” But I needed something else. Please don’t just leave me in the place of, “This sucks.” Offer me some hope with that. So I think it was just hearing the different ways that people were responding to me and then when it was my turn to walk alongside other people through their crisis I was trying to think about what I most appreciated hearing from other people. And I think that was it. I wanted people to acknowledge that it was really hard and I wanted people to give me truth and hope and it was really nice to know that I was loved.
Those three things are truth and when we are in a mess of junk, we don’t need platitudes. Does it look any different for someone who is in a chronic, never going to get better, type of situation? The hardest part for me is when to move from the, “This sucks,” to the “God is good,” part. Sometimes, I’m not saying all three things in every conversation. Sometimes it just sucks. And sometimes we might just have to sit in that for a while. Or it might be that we say, “This sucks and I love you,” because we can tell that our friend is not in place to hear the, "God is good,” part. It’s just gonna sound like a band-aid slapped on the wound. So, that is the hardest part for me and the part that takes the most prayerful discernment. “Lord please lead me in this conversation because this is really hard and I don’t want to minimize their pain and I also don’t want to just leave them in The Pit with no hope,” especially if our friend has the hope of Christ in her life. I have a friend right now who is in a really hard, chronic, no-hope kind of place and that’s the hardest part for me. The, “This sucks,” part is really obvious and, “I love you,” needs to be there, so when to move from that to the, “God is good,” part, that’s the hardest part. But it’s still what they need to hear. And it may not all be in every conversation. But I think in all situations that’s what they still need.
And knowing that if it’s a long illness, it’s going to be an ongoing conversation. So maybe not today, maybe tomorrow. In those chronic situations, our friends have a lot of fear that we’re going to get tired and move on. So also making sure that we are saying, “I’m still going to show up for you. I’m not going anywhere.” That’s part of the, “I love you,” for them. It’s one thing to show up for a one month crisis. It’s another thing to show up for the long haul. Or if they are terminal, to say, “I’m still going to show up for your family.” That’s what they want to hear. That’s what they need to hear.
Moving on, you talk about matching a person’s tone when you are communicating support. Tell me more about that. That is something that can be really hard to navigate in a chronic situation because sometimes our fiends are having a good day, feeling upbeat or feeling helpful or they’ve just gotten good news or their last scans were stable… And then, other days they’re not. So sometimes, when we show up to bring them dinner, we don’t know if they’re going to be having a good day or if they’re going to be having a hard day, if they’re feeling really hopeful and they’re ready to fight or they just barely got out of bed because its just so hard. I think it can make things awkward and cause them to not feel heard and seen if they‘re feeling down and we’re like, “Let’s go! You’re fighting! You’re beating this thing!” Then they‘re feeling, “Wait no. You’re not hearing me. Now I feel isolated because I wanted you to get in this pit with me but you’re trying to put me in a boxing ring.” Or vice versa. So, just start with, “How are you today?” and then give them a chance to tell us how they are today. Then gleaning from that where they are and what’s their attitude towards their situation today and then we can use that to determine how we’re going to respond.
I can see how that is especially helpful for the friends with long illness, where there’s not a linear trajectory out of it. Where the ups and downs are very unknown. In fact, I have a young friend who has cancer who emailed me with such a good question about this. I’m curious how you would answer her. She wrote, “How do I handle smothering from people, the closest people, who love me? They are in here every day but today I feel good and want to take care of my toddler for a few hours but they’re not letting me.” She doesn’t want to just say no and hurt them or have them not come back on a day when she does need them. How would you handle that? Oh man. It probably depends on what kind of relationship you have with them. But be honest and say something like, “I am so grateful to have your help because there are some days that I am really going to need it. But today, when I’m feeling pretty good, I need to feel normal for a little while. You can help me by letting me take care of my child and feel like a normal mom this afternoon.” “You’re helping me…” I love that because that’s what they want. They want to help.
Now, let’s talk about Survivorship. You are a survivor and so far, so am I. I could relate to so much of what you said. Things like not enjoying the luxury of naps anymore. And Scanxiety. You also describe something in here that we have a word for so I’ll help you out. We call it “Traumaversaries.” Also, related, you talk about hesitations for planning for the future. This one is still difficult for me. Some of my friends wanted to make plans to go camping with my family next summer. So I said, sure. Go ahead. Make the plan. But I can’t get excited about it. I always get trip insurance. Every single time. When you buy a plane ticket and it asks, “Do you want to buy the insurance?” It’s, “Uh-huh. Yep.”
And then I feel guilty because I can’t change any of it. Hmmm… this makes me think of Bucket Lists. I can’t make one. I just can’t do it. I have one that I made a few years ago. But mine aren’t trips, they’re moments: Take my kid to their first day of junior high. See my children make a profession of faith in Jesus Christ. Celebrate milestone anniversaries with my husband. I have the list and actually, I’ve checked off a lot of them. And I’m checking one off next week, Lord willing. But it’s not like: Go to Tahiti. No. Those are God things. These are things that I didn’t think I’d live to do. The first thing was: Fix my daughter’s hair, because she did’t have hair long enough to do when I got cancer. She’s my only daughter and I wanted to fix her hair. It’s kind of funny, because almost as an afterthought, I put: Graduations. Weddings. Grand-babies. I put them on there sort of, “As if.” Like a really far off pipe dream. It’s cool. It’s just one way cancer has changed my perspective. My one for next week is, Taking my son on his first college visit. I worked in college admissions before I had kids so I always looked forward to this but then I thought, I’m just not going to get to do that. Who gets super excited to take their kid to a college visit? I do! I got to take my son to visit Point Loma. We went together, just he and I, no Dad because I was feeling good and we thought I was stable. And the whole thing was like a dream. Just one-on-one with him, doing this thing that he wanted to do, that I thought I wouldn’t get to do. I totally get it. I’m excited for you. The last thing I wrote on my Bucket List was: New Perspective. That’s really the thing that has stuck with me. And maybe it’s the whole point. It’s to appreciate that I get to do my daughter’s hair and every day is a gift. Even though we say it, now we actually know it. Don’t take those things for granted.
Do you feel those marks of survivorship have changed at all in nine years of being cancer-free? After nine years of being a survivor, are they still just as poignant? Yeah, they are. It hasn’t stopped. I think that the way that I view my Cancer-versary (the day of my diagnosis) continues to be hard. I keep waiting for it to get a little easier. For me, it’s really complicated because it’s the day before my birthday. Every year, I don’t know what to do with that day. But it has gotten easier to walk through that. It’s kind of what I’m embarking on right now. It’s the month of October which brings back the memories of when I found the lump and when I went to the doctor and had a biopsy and all those things. You know, the leaves are changing colors, and we’re having parent-teacher conferences. It’s the time of year when we’re experiencing so many things that remind me of what I was going through at the time of my diagnosis. This isn’t answering your question at all but this might be helpful. My aunt and uncle lost a child several years ago and I’ve talked with my aunt quite a bit about grief and how those anniversaries can be difficult and what she said that I thought was really helpful was, even though, let’s say it’s my nine years, even though it’s been nine years, which is a really long time, this is only the ninth time I’ve walked through this anniversary. So, if it’s three years, this is only the third time you’ve done this. And so, just giving myself some grace. And helping people around me understand, if I need support from them, by not being afraid to reach out and say, “This day is still hard for me.” I think that’s probably the thing that has surprised me most. The sweetness of the things that I get to do are still really sweet to me. The first day of school still makes me cry. My daughter’s dance recitals still make me cry. “I’m still here.” That has not gone away. I get to do these things that even a few years ago I didn’t think I would get to do. But then the flip side of that is also these anniversaries are still really hard. I still don’t know what to do with some of these memories. I want to just celebrate them. That feels like what I should be doing because I’m still here and I’m healthy and I want to just be thankful but there’s also still just so many hard memories.
The fact that we’re celebrating that we’re still here means that we went through something that may have stopped us from being here. The trauma of that. For me it’s been helpful to recognize that it’s trauma. We went through trauma and it has changed us. It’s changed our thinking, it’s changed our bodies, it’s changed our minds. For example, I don’t spend a lot of time in parking garages because where we live we don’t have a lot of parking garages. So still, when I go into a parking garage, I feel anxious because it’s like I’m back in a hospital parking garage. What’s wrong with me? It’s been nine yers! I totally understand. It’s a low level apprehension about so many things. For me, it’s a cough. Any time I cough I think, “Is that an ok cough? Ok, ok, I’m ok.” Or someone else coughs. Last night, my son coughed twice and I went into hyper mode. My husband had to say, “It’s ok. He’s just coughing. It’s ok.” Thankfully, again with the circles, my inner people understand that. They’re not telling me, “You crazy cook.”
I’m going to take a tangent. A while ago, I was reading about a little girl who I didn’t know personally but sort of tangentially. She needed a heart transplant and her mom was posting updates from the hospital while they were waiting. I would read those notes of what they were experiencing and it was just like the ups and downs I had experienced in the ICU. And I just lost it. An emotional response is good but this was way beyond. My husband held me in the kitchen one day and said, “This is a lot. I don’t know how to help you with this.” I ended up calling our counselor and she said, “Nicole, this is medical trauma. We need to talk.” It was like Medical PTSD. Counseling helped so much but I was really shocked that it happened at all. So now, I feel like I have to be really cautious of that when someone tells me about a person whose story is a little too similar to mine and I feel that apprehension start to build up. I’m about to ask you about this but you are in a cancer support group to help process this kind of reaction. Since I don’t have a diagnosis, there is no support group to help me process these things. Which is maybe why I like your survivorship chapter so much because even just being a survivor puts me in a group of similar people. Have you ever experienced that kind of reaction that made you feel like you were back in the middle of your trauma? Yes. A few years ago a friend of mine got cancer. She had a type of sarcoma, the same class of cancer that I had, the year before my cancer. And then she had a recurrence several years ago. She’s actually stable right now. It’s wonderful. We’re having a celebration on Sunday. We’re so so grateful. But anyway, the first thing they did for her medically, after her recurrence, was they gave her the same chemo regimen that I was given. I’ve connected with some other Angiosarcoma survivors online who had the same chemo as me but it’s a pretty unusual chemo regimen, so for one of my friends to have it… It was so hard. It’s a chemo where you go five days in a row every three weeks. The firth day you’re just getting the pump disconnected but you get chemo at the infusion center four straight days and you have a pump that they hook up on the first day, then that would get removed on day five. I don’t think any of my online cancer friends had a pump like that. And so watching her go through that, being there when they were hooking up her pump… I hated that pump so much! That was, medically speaking, the worst part of my entire treatment. It made this noise that still makes me upset just thinking about it. So being there and hearing her pump and seeing them connect that and watching her be so sick and answering her questions about the side effects, it was awful. It was so hard and then I’d feel guilty for feeling like it was so hard for me. I mean I’m sitting with her and then I’m going to Target and she’s going home to get in bed. So it was just so complicated. I was so glad that I could be there for her because I didn’t have anyone like that when I went through it. I didn’t know anyone who had gone through my kind of chemo. I didn’t find those other Angiosarcoma people until near the end of my treatment. I didn’t know that there was anybody who had survived it, not until my husband found a Facebook group that was actually formed while I was going through treatment. So I honestly thought everybody who had it was dead. I’m not going to say I know how you feel… Oh, you do! For a while, there was no one. Nobody who had what I had. Nobody who had this chemo treatment. I didn’t have anybody to ask those questions to. And so I was so happy to get to be there for my friend but it was so awful. I’m so thankful she’s still here with us. I have come alongside other people who have passed but watching someone you care about walk through your worst nightmare, that you’ve spent so much time thinking about… I don’t know about you but I’ve thought about what hymns I want at my memorial service. I’ve written it down. I’ve thought about, Do I want to be at the hospice facility or do I want to be at home? What would be better for my kids? We’ve thought through these things so then when you’re watching somebody go through that, I think that’s just different and it’s so hard.
One thing we talk about regularly on the blog is community. My community is awesome but there is a point at which my fiends, even my husband cannot follow me. They cannot go past the surgery doors. They cannot get my feet one in front of the other when it’s time for me to get up and learn how to walk again and all that. But Jesus can. And that became so poignant in my life and I think that’s the perspective shift that made it all worth it. We talk about the presence of the Lord being with you in the hard because everyone’s hard is different but God is the same. One thing that was kind of different about my treatment was that I spent a lot of time by myself. I had to be in Houston. I would be there usually about 5 days before one of my friends would fly in and be with me during the actual chemo part and then even then I would be in bed resting most of the time. And I would fly home by myself so I was by myself a lot which had not really been my experience up to that point as the mom to three young kids. I was never by myself. Would’ve liked to have been by myself, right? Right. So, I feel that that really did help me to recognize God’s presence with me, not being able to substitute other people’s presence to be my comfort. The Lord’s presences WAS my comfort because often, that was all I had. I also think that because the cancer that I had was so rare and I think you’ll relate to this, I didn’t know anyone who had walked this road but I knew that God knew. I still remember one Caring Bridge guest book message that a person left, a man from church who had walked trough some seasons of suffering and his message said, “God knows.” It really stood out to me to think yes, nobody else really knows what I’m going through. People are so great but like you say, their understanding of what you’re going through really can only go so far. It felt like no one knew what it was like to be me but to remember that God knew. And that he was there. And that he would never leave me was so comforting. That was my greatest comfort through all of that: God knows. God is with me. He is never going to leave me or forsake me. He is never going to stop being faithful to me, not for one single second. I can trust him with these hard things because of that.
Giveaway
I feel so strongly that Marissa’s book, Loving Your Friend Through Cancer, should be on everyone’s reference shelf that I’m going to give away one copy. If you’d like a chance to get Marissa’s book for free, simply do one or all of the following. (Each one counts as an entry.) This giveaway will end 7pm PST, Nov 21st.
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