Holding Space

With Shelly Vaughn


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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.”


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Race With Grace

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Today I was able to participate in a 5K race for a wonderful organization. I walked it with the kids; and although I wish I could be in shape to run it, it was kind of nice to spend time walking the distance with loved ones. So representative of this experience for me- “walking the distance with loved ones”. 
We did have a few of the athletes on our team running the race- which were impressive. Way to go Rob VaughnAlicia HofmannSean DawsonLarry CaldwellMelanie WilliamsAdam Staller!
I’m exhausted tonight. But you know what- I’m exhausted because of a 5K! I used to be exhausted from walking upstairs. So things are looking up. And I’m super thankful that Keely A Smith-Jividen captured this special photo of me during the race. Looks like I’ve got some heavenly help shining down… ❤️


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“It’s all gone”

“It’s all gone.” Those exact words came out of the surgeon’s mouth today when I asked him if he can definitely say if there’s any cancer left. I know he hinted at it during the last appointment, and I knew that the pathology report was suggesting that, but he never actually said the words. And I was scared to even ask because every other person I know with cancer doesn’t/hasn’t gotten a direct response like that. But I asked, and he said “It’s all gone”, and for the first time I actually let the joy and relief that comes with those words enter my being and feel it from the inside. I don’t know how to explain it. Like I knew it intellectually at the last appointment, but today I FEEL it… I FEEL free of cancer and he confirmed that it is gone!!! I cried, the nurses cried, and they sent me home with cupcakes.   It’s also easier to react to such good news now that I’m further in my recovery from surgery.

Along those lines, I’m continuing to recover well. My incisions are healing incredibly well. The surgeon was impressed and said, “I’ll do surgery on you any day.” The infected drain site is finally starting to look better, though is still the most uncomfortable part of this.

I started physical therapy this week and was totally impressed. The PT talked about things we’ll do to prevent lymphedema (swelling in the arm that happens when lymph nodes are removed and worsens with radiation.) She’ll also help me work on increasing range of motion with my right arm. And will help with reducing scar tissue and increasing skin movement around the incision sites. She was extremely knowledgeable about post-mastectomy needs and I’m looking forward to working through this with her. It feels good to know I can now be a little more active in my recovery instead of passively enduring stuff that is done to me.

(I still have radiation that will start in a few weeks… and I’ll keep you all posted on that as it gets closer. The dr said that radiation helps reduce the long term chance of localized recurrence. As much as I wish this was totally done, I’m willing to do another step if it means preventing this in the future.)

It’s been a good week and an especially good Friday! Also, I’m writing this as I watch the girls play “Just Dance”… that’ll put anyone in an amazing mood!   Love, Love!


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Recovery

Yesterday was August 1st… mark that in your calendars as one of the best appointments so far!!! My prayers for healing have been heard and answered. First of all, I got my drains out which was a huge relief. And the surgeon said that’s the fastest he has ever taken them out of someone (just 6 days).

We knew during surgery that there were cancer cells found in one of the sentinel lymph nodes (which is why they removed a whole cluster of them after that). I still don’t know how many more were removed, but he said there were only “isolated tumor cells” in one of them, which is technically still considered negative. No other lymph nodes had any sign of cancer. He said it was because the chemo was so effective in killing the cancer in the lymph nodes. And the original tumor had shrunk to 1.2 cm. All margins are clear, which means there were no cancer cells near any of the edges of what was removed.

With the mastectomy and lymph node removal, they basically got all the cancer OUT of me!!!! It feels so good to know it’s gone!! I’m healing well, the incisions look good, and I have another follow up next week. I’m in a lot of pain today from where the drains came out… my tissue had already started adhering to the drains, so it ripped a little when he removed the drains. I’m taking pain meds to manage that pain for now and hopefully it will be better in a few days.

I will still do radiation as is protocol for treatment. That will happen in about 5 weeks when I’m healed from this. It’s the last big step for this time period (as reconstruction will happen next year).

My mom was here to help a ton last week. And we’ve had a lot of help with the girls and visitors to the hospital (thanks, Lisa GonidakisCindy Hastings WinterBrittany ArmstrongAmber Pierce NormanHannah SpringerKeely A Smith-JividenCinnamon Leonard, Becky Kearns, and Doug Gates.) I also had my own personal nurse today to help with changing my wound dressings (Kelly Dawn Hobbs) . It’s times like these I realize how wonderfully God has paved the way ahead of me… all the people He has placed in my life and ready to help when I need it. Thanks for all the prayers… please keep them coming for comfort as I continue to heal and pray that the pain subsides. Thanks everyone!