“Holding space for another person is incredibly profound. When you hold space for someone, you bring your entire presence to them. You walk along with them without judgment, sharing their journey to an unknown destination. Yet you’re completely willing to end up wherever they need to go. You give your heart, let go of control, and offer unconditional support. And when you do both of you heal, grow, and transform.”
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.
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.”
Pink… so much pink. I’m not opposed to the color in a general sense. But when I had breast cancer I developed a particular distaste for it. Everything had a pink ribbon on it!
Why did some people embrace this so (seemingly) easily? Why do some women get the diagnosis and immediately wear all of the pink ribbon gear they can get their hands on? Why did I cringe inside when I saw it? How could some women get pink ribbon tattoos and I could barely even wear a plain pink shirt without feeling a little sting? I think it has something to do with the extent that people identify with (and embrace) what they are going through. Clearly, I didn’t do either of those much at the time.
Today is Mother’s Day 2018. A day that I get to really celebrate my role in life as mommy to the two best girls I know. I was able to smile and appreciate it with a sense of joy that’s deeper than other days- especially as I think back to how I felt (physically) on this day last year during chemo. Rob planned a perfect day today and I loved it. The girls still fought in the car, I overdid it on our trampoline, and I didn’t get any of the laundry done that I had planned on. But “perfect” doesn’t mean that things don’t go wrong… I think it just means that things turn out ok.
You know how I know things are turning out ok?… Today I intentionally and proudly wore pink. 🙂
This weekend was filled with visitors and smiles. My parents, Greg, and Ali came for the weekend to spend some time out here. We finally celebrated Easter with an egg hunt and scavenger hunt from my mom. We also rode our bikes to go geocaching at the local park. Olivia had a pretty good wipeout on her bike and has some battle wounds to prove it. But she has been super tough and will be fine when her scrapes heal. If you see her limping around for a bit, you’ll know why.
Part of our Saturday afternoon also included a visit from my Aunt Dolly Kelly, cousin Diana Raub, and her two incredibly sweet children. Ben is her oldest (almost 4) and is my new BFF. Katie is a 1 year old climber with a smile as gorgeous as her momma’s. Back on my birthday, Aunt Dolly sent me a card saying she had something to give me in person when she could come out for a visit. So she made the trek out here to deliver- complete with homemade brownies and apple pie to fill our bellies.
I cannot say enough how much love and support I have felt from my family and how much her gift means to me. It’s a homemade bookmark, given with the sentiment “for when you write your book.” Thank you for the encouragement, Aunt Dolly… I needed it.
As she said with her own handmade creation- there are things she wished were different, parts that she doesn’t like, mistakes that only she notices. But isn’t that so true about everything in life? In every circumstance, there’s a point with where you just have to accept where things are and realize that there’s beauty in the imperfections. I’m working on that…
Sunday’s lesson at church was part of a series about relationships and marriage. We were reminded that with our spouses we need to love unconditionally… one way… without compromise and without expectations in return. When both people do this, it can be a beautiful relationship that grows in the image of God.
Mark 12: 30-31 says “Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.’ The second is this: ‘Love your neighbor as yourself.’
I love that David A. Black encouraged us to make our spouse our “1st neighbor”.
This served as a poignant reminder of what a blessing it has been (and I don’t use that term lightly) to be the wife of Rob Vaughn. Thank you for being an incredible man of faith who has demonstrated this kind of unconditional love so vividly in the last year. I’m lucky to be your “1st neighbor”- a place in life I didn’t realize was going to be so special back when I was 15 and fell in love with you (with the long hair, rock and roll T-shirts, and wallet chain).
Tonight, he was recognized by his colleagues with a “Star Award” through the school district. Turns out, I’m not the only one who sees what a great man he is. 😉
It’s been a while… so I thought I’d share a few updates:
1- I’ve healed well from the cellulitis infection. My skin is back to normal, the swelling is down, and my doctor said my blood work is “beautiful”. There are a few things that put you at risk for developing cellulitis- tissue that’s been radiated; areas with poor lymphatic drainage; and tissue that has had cellulitis before.
So, yes, I have all three of those which puts me at a decent risk for developing it again. However, I know exactly what to look for and how it feels, so I know to call the doctor right away if it does happen again. She also prescribed antibiotics to have “on hand” in case I notice the slightest bit of it starting again. I’ll keep them with me if I go out of town or anything- so I am armed and ready to fight it if it happens. As she said, if I have the meds with me I’ll probably be fine and not need them. 🙂
2- I had a long conversation with my oncologist about the clinical trial that I was doing. The medicine I was taking (Everolimus) is technically a kind of oral chemo. It’s nothing like the IV chemo I took, and the purpose of it is to make sure my body doesn’t become resistive to Tamoxifen (the hormone blocker… since my cancer was the kind that fed on hormones). But one of the results of taking it is lowering my immune system- making me more susceptible to infection (like cellulitis).
I’ve been off that study drug since I was in the hospital and we talked about it at my follow up yesterday. She feels strongly that it is worth trying again, for the potential benefits it has to keep cancer away. So the compromise is that I’ll take half of the dosage I was taking. That way, I’ll hopefully still get whatever benefits it offers, without compromising my immune system too much.
3- An unexpected result of having cellulitis was my oncologist’s concern with how this would affect reconstruction. When I was in the hospital and it was severe, she recommended that I don’t have reconstruction… ever. She was very concerned about putting me at risk for another infection and my body’s ability to heal. She said “cellulitis scares me… and I’m a cancer doctor.” I trust this woman more than anything- she already saved my life once. But that was just about the hardest blow I could’ve been dealt then. For a number of reasons, it was so incredibly hard to hear that recommendation and made for a pretty depressing couple of weeks. However, at my follow-up appointment she said she was totally impressed with how my body healed and that reconstruction is not “off the table”!!! It may have to be postponed, and we’ll know more when I talk to my plastic surgeon (he has been on vacation). So I’m feeling much better knowing that reconstruction might have to be postponed, but not out of the question.
4- Most importantly- This week, my friend has had her world invaded with this awful disease. She’s in the middle of the storm right now with her husband and it’s pretty devastating. Please pray for her, her husband, and their two children as they learn test results and make treatment plans. God will know who you mean.
Ahhh- all these life lessons about patience and love and God and faithfulness. They just keep on coming…. so keep on loving each other through it all.
I’m being discharged today. 😊 The antibiotics have worked well to treat the cellulitis. I haven’t had a fever since Tuesday. And the rib cage area is tender but not painful. Good enough to get home and take oral antibiotics to finish off the rest of this infection. I hear that’s it’s been warming up and today should be a good day to get home. Thank you for the continued prayers and messages and flowers (Mindy Brisbane Vickers, Carly Caruso, Megan Nagel). Thanks to Carrie King Donnell, Sarah King Cooey, Aubree Uhler, and Maria Hogan for visiting yesterday. And my favorite threesome came for dinner and to hang out last night. The nurse let Liana touch the buttons on my IV machine, which made her day!! (Thanks, nurse Julia.) Olivia did her homework in my bed. 😆
Much love to everyone. Appreciate what you have today. ❤️