I’m not ok, but it’s ok.

Nothing can really prepare you for when your worst fear comes to life.

I just had a conversation with one of my best friends from college about everything that’s been going on. She remembers me saying on numerous occasions that I could pretty much incite a panic attack at the thought of losing one of my parents in the near future. If (who knows, they’re adventurous, they could discover the source of Infinite Life in Jack Sparrow’s long lost cave in the Caribbean) and when they go, it’ll be 30 years from now quietly in their sleep after playing on the beach all day with their grandkids and drinking a bottle of Amarone.

For those of you who don’t know, in December my dad was diagnosed with Non-Hodgkin’s Lymphoma. A rare form called “mantle cell,” to be more precise. In January we found out it was Stage 4. It is aggressive, incurable, but treatable. My dad went into remission after four rounds of chemo, the earliest possible timing that could happen. In June, he underwent a bone marrow transplant, a procedure paired with intense chemo that could give us years before it comes back and we have to fight again.

Christmas 2016, before we found out it was Stage 4.

We’re 9 months post diagnosis now. The fight is going well, but still going on. We’ve reached a new normal, hopefully on the way back to the real normal.

When we found out, my dad immediately insisted that I not uproot my life and move home. So I continued on. Or tried to. I had my reaction, which, to put it plainly, was not pleasant, and then tried to continue on. I smiled, found things to laugh at, dated someone, traveled.

February 2017, FaceTiming from Breckenridge (wonder where I get it from… 😉 )

That doesn’t mean everything is ok, though. I totally have moments of feeling truly happy. But the fear, anxiety, uncertainty is always present.

I’m lucky enough that I was able to come home for a month after the transplant. It’s hard to describe this time period, this experience. Being in the bone marrow transplant unit with my dad, who sipped on milkshakes while cracking jokes with the nurses and fought against a ridiculous amount of pain. Not to mention he was exhausted from literally regenerating his whole immune system after the chemo killed everything off. After discharge from the hospital, we stayed close by in Chapel Hill in an approved hotel before he was fully discharged back home to the beach. Our whole world has revolved around medication charts, blood counts, cleaning procedures, and doctors appointments. (I cannot express how amazing our team at Chapel Hill was! All of the doctors, nurses, pharmacists, and staff were absolutely amazing, not to mention literally life saving!)

June 2017, walking in Duke Gardens after being discharged from the hospital.

When trying to explain how I feel and what I’ve been going through, someone close to me labeled it “the vortex.” Time seems to disappear. What goes on around me is covered over by a film. My reactions seem delayed, forced, unenthusiastic, or some combination of all three. Sometimes it’s hard to motivate to do anything at all but sit on the couch and stare.

The easiest times are actually with my dad. Talking, watching a movie, bitching about Trump. It feels normal.

I don’t claim to be experiencing a fraction of what he is. His strength is unparalleled in my mind. Anyone that has someone close to them that has fought the vicious battle against cancer can claim this.

The strength of my mother is incredible. My dad and I joke that this has given her complete freedom to let her nagging flag fly (she says affectionately). She’s organized, clean and tidy, constantly moving, and a planner by nature. The perfect caregiver.

Christmas 2016.

I’m the daughter of a man who was dealt the worst blow when he was the strongest, fittest, happiest I’ve ever seen him. An unfair blow to be sure. But as the doctors tell us, we are able to fight so hard and aggressively now due to the fact that he was so strong when this happened. I was not present at all the chemo treatments, doctors’ meetings, or daily battle of fatigue. But I continued as best I could because that’s what my dad wanted. I called multiple times a week, came home to surprise them at Christmas, again in the middle of chemo, and then for most of the summer after transplant.

August 2017, FaceTiming from Tahoe

But I digress. I didn’t want to talk about all the cancer things I’ve learned, or how amazing my dad is, or how scared I was when we found out he had cancer. I needed to put all of that out there so that what I did want to talk about makes sense. And because I haven’t really put it all out there yet.

What I really wanted to share is what I’ve discovered about how to interact with a friend or loved one going through something traumatic and heartbreaking.

People have taken a few strategies with me:

  • They upfront ask how I’m doing (and my dad). They listen compassionately and offer to do anything and everything.
  • They insist everything is going to be “fine.”
  • They bring up experiences in their own lives that mirror my own.
  • They don’t bring it up, allowing me to talk about it if and when I’m ready to. I’ve had quite a few people tell me that they don’t know what to say to me, so they don’t say anything at all.

For me, I appreciate being asked about it and him. It lets me know that I’m cared about and thought of. I totally get that people don’t want to bum me out or bring it up if I’m not thinking about it. But as I explained it to someone close to me, it’s something that is always present for me. By not asking about, or at least acknowledging, something so obvious in my life, it makes me feel a little weird.

August 26, 2017, Dad’s birthday.

When people just keep telling me “it’ll be fine,” I don’t really know how to react. I do appreciate the optimism, but part of me immediately bristles. The reality is that my dad’s cancer is incurable. And I have a lot of fear. By constantly repeating, “it’ll be fine,” I feel like I can’t express those fears. Any Sex and the City fans out there? Remember when Carrie just kept saying those words to Samantha after her breast cancer diagnosis? Sam’s response was, “[But what if it’s not?] Let me talk about what I’m afraid of.”

I’m a pretty open person. When I can’t talk about something, I say so. So for me, the best approach has been, “Hey, how are you and your dad doing?” To the point. I’ve reached a point where I can talk about it without completely losing it.

But I know that doesn’t work all the time. Everybody handles things differently. But everyone needs a shoulder and some love. So if you’re not sure what someone needs or how to approach him or her about it, maybe try out, “Hey, I wanted to check in and see how you were doing with everything going on. I understand if you don’t want to talk about it right now, but know that I’m here for you and love you.” Or even just ask how you can best support them through this. It lets them know you care without being intrusive if that person isn’t ready to open up. Sometimes people just need to turn inward for a spell, but it’s always nice knowing your loved ones are there.

March 2017, after the first two rounds of chemo.

When I got home in June, the beach was a place of solace for me. I could go out and sit in the heat, the sand, the sunshine, listening to the waves and give over to that fog. I was quiet more than I wasn’t, which is very unusual for me. My body hurt. I felt so lethargic all the time. After months of fighting against all of that to continue on with normal life, I gave in to it. People kept asking if I was ok, not used to seeing me like this. Part of me wanted to stare at them and ask if they were crazy. “Of course I’m not ok! How could I possibly be ok?!” I wanted to shout. Part of me acknowledged that this was just a natural reaction to all of the emotion and anxiety we had been going through. I wasn’t really ok, but it was ok.

Everything that I laid out is totally personal and only from my experience. But the point is to talk to your loved one. Ask what he or she needs. Maybe it’s to not talk about it, maybe it’s expressing deep fears, maybe it’s making jokes. But letting him or her know that you’re there for her in whatever capacity, that you love her, is what’s important.

July 2017, after being discharged home.
25 comments Add yours
  1. So many hugs to you my friend and to your Dad and your family. Thank yo for sharing this. Sharing can help to manage all of the feelings that are going on. Your strength and ability to be there for your dad is so powerful and must provide him with additional strength to fight.

  2. So much weight to carry no matter where he is in the treatment/healing process. I’m glad you put this all out here – for yourself and for others <3. I love you so much and am here for whatever you need – a shoulder, a biscuit, a sweaty hug, you name it! See you in just a few short days!

    XOXO

  3. Wow. First of all, I think you are incredible for all those words and feelings you just put out there. I can only imagine how difficult that must have been to write and yet, I would think it was slightly freeing as well, as if it’s a part of your healing process. I know we only met a couple of months ago but, if you ever need fresh ears or want to hear a corny (okay, and by corny, I mean lame) joke (don’t ask me why but I’m full of them), please reach out. Meanwhile, I am praying for the best of all things for you and your family.

  4. Oh my dear Liz, sendi 2nd you so much love. I do not know you dad, but I know you and your loveliness and strength cannot have appeared from thin air, so i know your parents are amazing people.
    Your fdather has so much to live for, and that will help him right. I’m not going to offer any platitudes, just know that you have a friend sendijng you so much love. Let me know if there is anyhthing I can do. Xoxo

    1. Thank you so much darling! My parents definitely are pretty amazing, so being there in any capacity I can is the very least I can do. xoxo

  5. Liz, what a beautiful post, and a beautiful tribute to your dad. You have me in tears, as you have many times since he was diagnosed. Thank you so much for sharing your experiences, and for helping guide those who love you how to show their love and support. I’m honored that you’ve shared with me the ups and downs and sanitization intricacies over the last 9 months and I hope you’ll continue to do so. Love you. <3

  6. Oh Liz, I had no idea you were going through all this. It sounds like you are staying so strong for your dad and your mom, which is wonderful, but can leave you feeling hopeless and exhausted. Thank you for sharing this. I think by sharing you will not only get your feelings out, you will open yourself to the love and support of your friends.

  7. Liz, I’d been thinking about texting you all week before I saw this post. I’ve often asked your mom what I can do for her and she never asks for anything because she is so strong, capable and independent but if YOU think of anything, please reach out and know I am always here for you and your family. I love you.

  8. So beautiful and frank. Thank you for sharing so openly what you have been through. Seth and I send our love. You and your dad and mom are always in our thoughts. Much love❤

  9. What a tough experience for you and your parents. I’m sure while it was all going on, you really didn’t have time to process how you were feeling. I’m glad that you are doing that now and that you are ok. Sending hugs and healing vibes to your dad and you. Why is life so hard?

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