Holding Space

With Shelly Vaughn


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Dr. Rehmus

There aren’t enough “thank yous” in the universe for this woman. She’s my oncologist- Dr. Rehmus- the person who saved my life. This post is to acknowledge and celebrate her!

I don’t think I’ll ever forget the day in 2017 when I met her. I had just learned of my diagnosis around lunch time and had an afternoon appointment with my surgeon (someday I’ll see if he’ll let me take a selfie with him, too!) It was the end of day on a Friday and I’m sure she would have been on her way out the door if not for me. Thankfully she said she would take my appointment at the last minute.

As Rob, Trisha and I walked into the room with the round conversation table, I couldn’t stop thinking about how nauseous I was and unsure if eating something would make it better or worse. Dr. Rehmus walked in with her medical student and introduced herself. I vividly remember that the first thing she did was sit next to me and turn her chair so that we were knee-to-knee. I don’t know the exact words she said but the sentiments were acknowledging that this was a hard afternoon and an immediate concern for taking care of myself- starting with getting me crackers and ending with a prescription for Ativan and instructions to pick up a bottle of wine on the way home (don’t judge if you haven’t been in that position before. 😆)

She saw me that day with all of the fear in my eyes that I couldn’t hide. She knew how much to explain and when to stop because it was mental overload. She had been here thousands of times with other patients, yet still managed to make me feel like I was her only (and most important) one. She did this throughout my entire care with the perfect combination of intelligence, reason, compassion, encouragement, and humor that is necessary for this kind of work.

I have always had confidence in her as she provided reassurance in her responses to my gazillion questions. She is the epitome of amazing medical care. Although I obviously wish I didn’t need an oncologist, I’m thankful she’s the one!

Now, after years and years of treating thousands and thousands of patients, she gets to retire! I’m so excited for her. Yes, she diagnosed me with “oncologist withdrawal syndrome” (her made-up term for what I’m going through), but I don’t know how to feel knowing that I might never see her again!!

So I will celebrate her here and introduce her to all of you and pretend like she’s a part of this group. Because I wouldn’t be here to keep writing and sharing thoughts if not for her. Not sure how a woman like that stays so humble, but I want to be like that when I grow up. 😉


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You just never know where your path will lead. Rob’s path is taking him through the 5 boroughs of New York for the NYC marathon!! He’ll be running in November and achieving this goal he set out to do a few years ago. He was planning to do this in 2020 but obviously that was cancelled, so he is now on his way to do this in a few months and I’m so proud of him!!

You all know cancer has affected our lives so much- as well as so many of you. Rob has chosen to race by fundraising for a cancer research center in NYC. If you are able to donate to the cause, click on his link. If you are donating in honor/memory of someone, let him know and he will add it to his shirt on race day. And if you are inclined, please pray for this amazing research company because, my goodness, what a difference it would be if a cure can be discovered. Thanks in advance for everyone’s support for him. He’s a rockstar!

This is how we fight this disease together!

https://charity.gofundme.com/o/en/campaign/team-waxman-2020-tcs-new-york-city-marathon/robertvaughn11


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Two bags of trash

Two bags of trash- seems like no big deal but it was SO emotional. (I wonder how it feels for other people who aren’t so sentimental about every little thing in life.😆).

These bags are the last round of my “cancer stuff” that I’ve held onto. The “essentials” from surgeries and treatment that I haven’t gotten rid of yet. In trying to explain to Rob, I realized that this seemed important enough to include on this page- and so I’ll share…

These two bags are filled with the medical things that helped me through cancer treatments- the expired numbing cream to go on my port each time they accessed it for treatment; the wraps to keep the bags of ice on my hands during chemo treatments to minimize neuropathy; the “drain apron” that was essential to hold the drains post-surgery; the bandages and binders to help hold my body together as it healed. These items were valuable to me along the way, and holding onto them has made me feel prepared for the “what if…”

I’ve always thought that part of the PTSD aspect of my experience was that it was so sudden and unexpected at my age. And I wonder how differently (if at all) it would have felt to go through it when women are “supposed to”- more like in my 50s or 60s. I wonder if it wouldn’t have been so traumatic if it was more expected and I was more prepared.

It makes me think of the wave that knocks you over in the ocean: when you’re facing it and watch it get closer to you, you are ready for the hit no matter how hard it comes. You bend your knees and you either dig your toes into the sand to stand firm; or you time a jump just right so that you can ride it out with a little grace. It doesn’t seem so bad when you are ready and face it head-on.

When you’re not expecting it- that’s when the wave knocks you over completely. That’s when you face plant and get a mouth full of saltwater. And you get all turned around and disoriented for a minute, not knowing what happened or where it came from.

I pray every day that I don’t get hit by another wave. I feel guilt because my mom didn’t recover from her wave. And the recent anniversary of the day Amy went to heaven reminds me that it can be even more unexpected than my own hit.

Subconsciously, but not too far down to retrieve the thoughts when I need them, I know I’ve hung onto this stuff just in case. Today, in a moment of freedom and excitement and worry and guilt and fear and peace… I let them go. ❤️


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January 20th

January 20th- it never comes without all of the emotions.

4 years ago today was my initial diagnosis.

1 more year until the big #5- when recurrence risk is low enough that I can use the word “cure”. ❤️

The details of that day have not faded; and the impact is a mess of thoughts and feelings.

It seems like a lifetime ago and just yesterday at the same time.

I’ve hated my body and been amazed by it.

I’ve felt closer to God and then not sure He’s even there.

I’ve mentally planned my funeral, and never been more alive.

I have been held up by others, and held others with even heavier burdens.

I have joked about cancer, and have been paralyzed by the seriousness of it.

I have embraced my scars, and hid behind clothes and in the dark.

I have felt thankful for being physically cured, and guilty because mom wasn’t.

Weak and strong.
Alien and human.
Depressed and joy-filled.
Frustrated and grateful.
Broken and healed.
Weary and hopeful.
And hopeful.
And hopeful.
And hopeful.

The only constants: “change and time” … and HOPE.
Artist credit: Katie Belden ❤️


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Pray For Lea

Lea is a sister in Christ. A mother, wife, and fellow breast cancer survivor. Though I knew her briefly many years ago, we reconnected in 2017 when she was diagnosed just after me. We’ve shared doctors and specialists, our radiation schedule was almost identical- so much that I would see her name on the list of patients in the radiology suite right after me. Most recently, we’ve seen each other with our families at Stewart’s Caring Place where we’ve gone for their family Halloween and Christmas parties.

Yesterday I heard that she is not doing well. Her cancer has metastasized and is in her bones. Her prognosis is about 5 months. 5 months, friends. I cannot imagine hearing that kind of news. My heart is broken.

Please pray for Lea. I heard that her spirits are up right now, but she is in pain and having trouble walking.

And, only after you’ve prayed for her and her family, I’m asking if you could pray for my heart to have peace with this. First Linsy Biege, then Jennifer Johnston, then Laura Ritter Allio… they are all young women who I’ve met since 2017 who are no longer here. I don’t want this to happen to another one. I can’t help but feel scared. This is the reality of living in the world of that terrible disease. I hate it.


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Always There

I saw this on a website a few months ago:

“Imagine you’re going about your day, minding your own business, when someone sneaks up behind you…

You feel something press up against the back of your head, as someone whispers in your ear.

“Sssshhhhh…. don’t turn around. Just listen. I am holding a gun against the back of your head. I’m going to keep it there. I’m going to follow you around like this every day, for the rest of your life.”

“I’m going to press a bit harder, every so often, just to remind you I’m here, but you need to try your best to ignore me, to move on with your life. Act like I’m not here, but don’t you ever forget… one day I may just pull the trigger… or maybe I won’t. Isn’t this going to be a fun game?”

This is what it is like to be diagnosed with cancer. Any STAGE of cancer. Any KIND of cancer. Remission does not change the constant fear. It never truly goes away. It’s always in the back of your mind.

Please, if you have a loved one who has ever been diagnosed with cancer, remember this. They may never talk about it or they may talk about it often. Listen to them.

They aren’t asking you to make it better. They want you to sit with them in their fear… their sadness… their anger… just for the moment. That’s it.

Don’t try to talk them out of how they are feeling. That doesn’t help. It will only make them feel like what they are going through is being minimized. Don’t remind them of all the good things they still have in their life. They know. They are grateful.

But some days they are more aware of that gun pressing into the back of their head and they need to talk about it. Offer them an ear. ❤”

To continue with the above analogy, I’d say that most of my days are spent with just an awareness that there’s someone behind me. And today would maybe be one where I felt the touch.

I’m fine. Really. But I had a follow-up kidney ultrasound this morning. It’s only because way back when this started in 2017 they noticed a small nodule on my kidney which is “very likely a cyst.” Cysts are very common and most people have them but have no reason to know they’re there. But with my history, my dr wants me to get annual checks on this to make sure it doesn’t change size.

The tech doing the ultrasound said she does so many of these for people monitoring something that was a finding from another test. She actually said that this morning was “full of kidney ultrasounds” for her.

I know it’s nothing. I know I’ll get a call in the next few days that says it’s fine and I’ll just do the same thing next May… and every May forever. But, as much as I hate to admit it, the thoughts crept in today and we’re unsettling.

Thankfully, my day at work was good and I came home to this beautiful weather- perfect for hammock laying, trampoline jumping, dinner outside, and yard work. Thank you, God, for the sunshine and the peaceful evening.


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Miles To Go…

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I could probably write a book just about my experience with the Akron Marathon from a couple of weeks ago. I could, but I won’t. I’ll instead try to summarize and hit the highlights in a post here.

Shortest possible summary: It was physically really hard, but emotionally amazing.

Best attempt at a real summary:
I’ve participated in 9 of these races- 7 relay teams and 2 half marathons. This was my worst (slowest) and my best (because I did it). It could’ve easily been just another race, if there weren’t sweet moments all through that day that made me smile:

1. It’s hard to sleep the night before a race… it always is. But guess what time I woke up and looked at the clock- 3:54 am. Guess what my grandma’s house number is- 354. Thanks, Grandma. 🙂

2. My tattoo on my foot says “Miles to go…” So our team name was “Miles together.” I ran the race of my life with the girls who have been my friends since middle school. Together, we can get through anything- like cancer and marathons.

Trisha ran the 4th leg of the race and I ran the 5th leg. Which means she handed off the slap bracelet to me. It’s not quite as seamless as a relay handoff in the Olympics. But when your twin sister is the one right before you, it requires a quick, tight hug in the middle of the road. An embrace I won’t forget- with my mom, our daughters, and my cousin, Terry, watching and holding the most encouraging signs ever.

My lucky number is 11. Guess what our team’s pace was- 11:11!

3. The shirt I wore during the race said “survivor” on the back. At one point in the race (shortly after “cardiac hill” for those who know the race route), an older man ran up beside me and smiled. He pointed to his own shirt that said “Living With Breast Cancer”. He simply said “what kind did you have?”… and that started a simple but inspiring conversation during the hardest part of my hardest race. He said that his wife has stage 4 cancer and he runs in support of her. As a reminder to LIVE with whatever we’re given. After a few minutes, my breath was getting heavier while his was not. I told him I needed to walk for a few minutes and he graciously thanked me for inspiring him to finish his marathon. This guy, nearing the end of a 26.2 mile race, was inspired by this girl walking partway through her 5 mile race. If I would ever see him again, I would tell him how much HE inspired ME. I am so grateful that he literally crossed my path during the race.

4. Those of you who knew my friend, Allie, know how much she took care of herself and her body. She ran a lot and completed the Akron Marathon when she was healthy. When she was fighting her own battle with cancer, I bought a headband that says “Livestrong Armstrong”- the headband I have had with me for every race since then. Even if I’m not the athlete she was, I still think of her all the time when I’m running.

There are thousands of people who participate in the marathon. And there are shuttles that take people to different relay legs. As I walked onto the shuttle to take me to the start of my leg, I immediately heard someone call my name. Sitting right across from me was Brittany Armstrong. Brit is my friend, a sister in Christ, and the mother to Allie’s daughters. Brit eventually married Allie’s husband, Adam, and somehow completely gracefully stepped into huge shoes. I cannot imagine the challenges that their family has experienced, but I know that the situation was prayed for by so many people- especially Allie. Seeing Brit that day inevitably made me think of Allie… a lot. I felt her presence in a way that’s hard to explain without sounding totally strange. I have a unique understanding of some of the thoughts that my friend surely had about her husband and daughters before she passed away. Which makes me also have a new appreciation for the beautiful, healthy runner who is raising those precious children and loving her husband the way that would make Allie smile.

And guess who I kept seeing during my actual run even after we said goodbye at the shuttle- Brit! We ran the same leg of the race. I would pass her, she would pass me… and that happened quite a few times over the miles we ran. I saw my friend, Brit, and I thought of my friend, Allie. And both things made me thankful.

5. The last best memory of the day- racing down the finish line. As I probably could’ve predicted if I thought much about it- my sister and teammates screamed loudly along the sidelines with high-pitch squeals of excitement and encouragement. But just before I got to them- there was Rob. Cheering for me during one of the most symbolic moments of my life. His strong voice rising above the hundreds of people along that finish line. I saw the smile on his face and wasn’t sure whose was bigger- his or mine.

You see, the race ends in the Akron baseball stadium with a champion finish line. All of the spectators fill the stadium seats. But runners are allowed to stay on the field and cheer on the finishers from the field. The week before the race, Rob decided to join a relay team. I didn’t realize until he mentioned that he did it so that he could be on the field to watch me finish. So sweet, right?! And I’ll be forever thankful that he chose to do that because his high-5 along that finish line was one of my favorite ever!!

Lots of details to cherish. Lots of joy to be felt. Lots of life to be lived.

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Miracle

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“When I see your face I see a miracle.”

Those are the beautiful words that a friend told me yesterday at church. It caught me off guard and brought me to tears.

I believe that God is powerful enough to make miracles happen. But I do not use the term “miracle” lightly. (Nor the word “blessed”… but that’s a story for another post.)

I was fortunate enough to witness two miracles when my babies grew within me and were born into this world. But I never thought of myself as a miracle.

My friend’s comment yesterday made me feel humbled and honored… and guilty. Humbled and honored that God could have chosen ME to be a testament to his power to heal. But guilty that I haven’t recognized that in myself yet.

Of course, the skeptical/oppositional side of my personality thinks of those who are not healed. Why wouldn’t God choose them to be a testament to His power? Why would He not grant that same miracle of healing to those who seem to have prayed even harder and longer, and honored Him in their lives more than I have?

It just doesn’t make sense. And for a logically-minded sensible girl, this is when my soul feels so conflicted. I’m usually always thinking of the flip side of comments. My response is often “but if… then what does that mean when the opposite happens?” But today- this wonderful, beautiful day- I’m not questioning anything.

Today I got “all clear” results from a CT scan! This is my first scan since treatment has been completed. I know that the doctors said my cancer was gone before, but today was the actual proof! And apparently I needed that proof for the incredible weight to be lifted.

I’ve heard people say that you don’t realize the weight you’re carrying until it’s gone. That is SO true. I was so scared that treatment really didn’t get rid of all of the cancer. I was so hesitant to praise the Lord who healed me. That’s hard to admit because I know I should be praising Him regardless of the outcome. But it’s true. I was so worried that there was still cancer somewhere in me and that I would be hearing bad news from this scan. I was finishing projects around the house, organizing the girls’ rooms, trying to get caught up on laundry- all preparing to hear bad news this week.

To those of you who know the white-knuckling anxiety that precedes a post cancer scan: I’m sorry if I didn’t recognize the immeasurable fear that builds up until you get the result. For those of you who haven’t been through it yourself: I’m thankful this has not been a part of your life.

Stressful doesn’t begin to describe it. But there is a perfect word to describe getting the results you’re hoping to hear- “freeing”. Free of the fear and anxiety, free of disease, free of the immediacy to cross things off your list. It feels amazing. If good things make you feel like you’re “on cloud 9” then I’m “on cloud 1,000”.

I have been reserved in my praise to the God who made me, who has made a way for me to get through this, who has placed each one of you in my life to pray for me. But today I wholeheartedly praise Him for my life. He did this. He healed me and I do have proof of that now. I am a curly-haired testament to His power. I hope you all see that as I confidently and proudly claim it now.

I’m alive and healed. And that’s the kind of news that warrants ice cream for dinner.  💗


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Survivor

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My all-time favorite class in high school was Language Studies with Dr. Wansor. I loved it! Studying words and semantics and how it affects people- yes, please! I could’ve sat in that class all day. It may have been the only text book I actually read my senior year. (Wait- I think I also read my Sociology book- that was another good one.) It’s no surprise that I got a degree in a field where I can study language for a living. It’s also probably why I get hung up on semantics sometimes… sorry about that.

Today is “National Cancer Survivors Day”. I’ve never heard of it before (and I kind of think we should get free ice cream or something today, right? I mean- National donut day, coffee day, mother’s day- you get free stuff on those ones.) Anyway, I think it’s the perfect day to share my thoughts on the word “survivor”, and a few other definitions within the cancer world.

A “survivor” is anyone diagnosed with cancer. Any person, any stage, any cancer- from the moment of diagnosis you become a survivor. Because unless/until you’re no longer here on earth, you are surviving. It’s not a term used just for those who no longer have the disease (which is how most people use it). So yes, the person living with stage 4 cancer is a survivor. The person just diagnosed and given a few weeks to live- they’re a survivor, too. And the 38 year old woman in Ohio who continues to show no signs of the breast cancer that was removed from her during a mastectomy last summer- she’s a survivor as well.  😉

Another term that I learned last year- “previvor”. These are women who have been identified as having a high risk for breast cancer (usually because they were found to have a mutation of the BRCA 1 or BRCA 2 gene). They are women who know that their risk of getting cancer is so high, that they choose to have a mastectomy and often hysterectomy to prevent ever getting the disease. Most of the time, these women get immediate reconstruction after their mastectomy. These women are brave- they are doing something very significant and serious in hopes of never hearing the words “breast cancer” from their doctors. In case you need an example- this is Angelina Jolie. She was brave with what she did and I never want to minimize that. But she did not have breast cancer. And it’s offensive to those who actually have cancer to compare them to her (or other previvors).

And while we’re thinking about different stories… I’m going to try to explain how things are perceived by a person on this side of the disease. As my doctors have said- “every cancer is different”. There are so many different kinds of breast cancer with different stages and pathologies. Your kind of breast cancer dictates your course of treatment- whether you’ll have chemo, radiation, surgery, or which combination of the three.

This means that some women don’t need chemo, some don’t need radiation, some have a lumpectomy and some a full mastectomy. Of those who have mastectomies, some choose to “live flat”, some “live flat” against their choice, and some have immediate reconstruction. So it’s quite a range- from women who have a mastectomy and immediate reconstruction (many people don’t even know these women have had cancer) to those who have all three treatments and no reconstruction. The experiences are drastically different. After living through the extreme side of the spectrum, I apologetically feel like women who are on the other side of where this treatment pendulum swings are lucky. It’s not a feeling I’m proud of. But it’s real. When you’re talking with someone going through treatment, remember that it is not helpful when you compare their experience to someone who didn’t have the same treatment (especially if it’s perceived as “easier” in some way).

But here’s the thing I always come back around to: every woman facing breast cancer, regardless of the extent of their treatment, has been dramatically shaped by their experience. It’s most likely the “biggest” thing in their life (or at least very high on the list). It has likely affected their relationships with friends and family. Every one of them has faced mortality and lost the innocence of assuming a long life. And every one of them lives with the fear of recurrence- whether they think about it constantly or occasionally. Whether they acknowledge it or distract themselves from it. They are different than they were before cancer; living a life forever-changed by that disease. Their sense of comfort was broken by one word. But brokenness can be a beautiful thing- because it allows light to shine through.

Today I want to acknowledge and celebrate the light shining through every cancer survivor. Sending love to you all.


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6 Months Later

Today is May 20- which means it has been 6 months since my very last treatment! It feels like a milestone chunk of time has passed… and I really like that.  🙂

I’m feeling good and loving all of this nice weather. We’ve been spending time outdoors riding bikes, geocaching, and playing outside. The girls have a ton of fun activities happening at the end of the school year… and it’s nice to feel well for all of them this year. At their dance rehearsal last week, my friend reminded me that at last year’s rehearsal I couldn’t eat (remember my survival on slushies?!?) and had to constantly use my “magic mouthwash” just to tolerate the pain from the mouth sores. I’m thankful for those reminders to keep my perspective straight.

I have a few random cancer topics I’d like to post about… and today feels like the appropriate time to talk about recovery. When I was first diagnosed, my treatment plan had the long-term goal of “cure” (sums it up well, huh?) At a recent follow-up appointment, I asked my oncologist when we can say I met my goal. The answer was a groaning “5 years from now”. Yep- in order to actually get to say I’m cured, I have to be cancer free for 5 years. But I’m 6 months into that now, so I’m 1/10 of the way there!!

So then people ask about “remission”, “cancer free”, and “no evidence of disease”…. All terms used to describe cancer recovery at one point or another. “Remission” means that they don’t think there’s any cancer left… but they can never be sure. Cancer is so tricky and is dormant in so many people- it doesn’t become life threatening until it starts growing uncontrollably. So it’s hard to definitively say that it’s gone. “Remission” is a term used outside of my cancer world, and I’ve never heard it from any of the medical professionals I’ve been with. So when people ask if I’m in “remission”, I guess the answer is “yes”… it just feels awkward to classify something in a way that my doctor’s don’t.

Doctors are more likely to use the current term “no evidence of disease” or “NED”. This is their clearer way of saying that they don’t see evidence of any more cancer. This doesn’t commit them to saying it’s gone or cured… but they don’t see any signs of it anymore. So this is probably the term I would use if I had to choose one… because I’ve heard doctors actually use it. The caveat- they use it after PET scans, MRIs or CT scans, and I haven’t had any of those…. Because they don’t think I need them because we don’t have reason to believe there’s any cancer left.  🙂 (Yep- that just looped around into a big question mark.)

As people read through that, they may think “just be happy that it’s gone” or “why worry about the terminology”. It’s something that I struggle with because I SO
desperately want to feel “cured” and move on. My hesitation is two-fold:

1- Cancer caught me off-guard. I knew I had a high risk of it because of my family history. But I never imagined I would have to deal with it in my 30s. So part of my caution is a protective measure to prevent that again.

2- I still feel like a patient. I take oral chemo pills as part of the clinical trial I participate in. I take hormone blockers that have their own lovely (said sarcastically) side effects. I go to a zillion appointments all of the time- with my oncologist, research nurse, surgeon, endocrinologist, and radiation oncologist. They are mostly just 6 week follow-ups, but when you have so many different follow-ups they feel like they happen every week. I also have random other appointments and bloodwork to do- like my bone density test last week. So when other moms are trying to remember their grocery list to pick up on their way home from work, I have to add in a stop by the dr for a kidney ultrasound (and remember not to pee beforehand because they need a full bladder). I miss the days without all of this extra stuff. My right arm and side are sore and partially numb still- without the range of motion I used to have. I need to do stretches every day or it starts to get tight and painful. (When they say that the radiation effects last 6-12 months, they weren’t joking.) And, the obvious physical issue of “living flat” as I wait for reconstruction.

I love my life. I have moments and days of such sweet joy. But sometimes at the end of a really great day, I think “what would that day have been like for my family if I wasn’t there?”. I don’t know if that’s morbid or depressing, or just another perspective I have that other people don’t. But I’ve talked to other survivors about it and they have the same thoughts… so I figured I should share. And when people ask about my recovery and healing, now you know why the answers are more complicated than it seems they should be.

As many of you continue to ask what to pray for, I ask that you pray that this can be easier for me. That I can more simply live without so many thoughts about how I answer questions. That I can emotionally “move on” from this a little faster. For now, until I feel more confident with anything else, if someone asks how I’m doing or if I’m “cured” or in “remission” I’m going to stick to my answer of “I’m happy to be alive.”