Holding Space

With Shelly Vaughn


Leave a comment

Settled

You know the feeling you get when you sit on a beach chair at the edge of the shore and you bury your feet a little in the sand? The sand that isn’t totally dry but gets slightly moistened by the waves every once in a while. The sun beating down to warm your skin. With each shallow wave, your feet sink a little further down in the sand. There’s a sweet spot- after a few waves but before too long of waiting there- when it feels just right. Settled. Not rooted; still moveable…. but settled.

That peaceful, comfortable, settled feeling is how my soul feels tonight.

I have had a whirlwind two weeks that included seeing so many people from home. It started with our Caldwell family reunion in Wildwood, NJ (A week with the Caldwells… yes, please!). Then Rob and I were able to spend some time in Nashville without the girls for a couple of days hearing some amazingly smart, inspirational speakers and hanging out with friends. We turned right around to go to Pennsylvania for my 20 year high school class reunion. (How did 20 years go by already?!) Squeezed in a family birthday party for Olivia at Hoss’s (a favorite PA restaurant). And topped it off this afternoon with a graduation party for my cousin, Elizabeth- which ended up being like a reunion on the other side of my family.

In the middle of that busyness I also went to the funeral of a friend’s father. It was heartbreaking to see the grief and sadness that cancer caused another family. But (with a capital  😎, the man was faithful and is in heaven now. And it was inspirational hearing how he responded to his circumstances that led him there.

I’ve so enjoyed all of this time spent with family and friends- hugging those who have only been connected through technology for many years. I had long-overdue conversations with three cousins who have been through cancer- learning more details of their experiences. My “little” cousin (who I held all the time when he was a baby) is now a daddy and I met his baby girl. I felt such a sense of hope and love seeing that the next generation is growing up and starting to change the world. I loved it! And was reminded 10-fold why I am so lucky to have been born into the family I was, at the time that I was.

Friends, family, laughter, tears, hugs and a lot of Western PA accents in the last two weeks. The best way I can describe it is “soul-settling”. I hope other people can feel this sometimes because it’s amazing. Cancer treatments held me back last summer… that’s not happening this year!


Leave a comment

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.”


Leave a comment

Life Lessons

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.


Leave a comment

Going Home!

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.  ❤️


Leave a comment

Cellulitis

It’s so peaceful right now. 12:40 am in a strange place. I didn’t think I’d share this, but I feel compelled to write, so here goes…

I will be fine, but I was admitted to the hospital yesterday to treat cellulitis. It’s a soft tissue infection and I got it around my right rib cage, where I had radiation. It caused a high fever that wouldn’t stop spiking, and very tender skin. I need IV antibiotics to treat it, along with some nausea meds so I can keep food down and I will be here for about 3 days. I was so upset about it yesterday when my doctor told me and I realized I wasn’t driving out of that parking lot… I did not want to be here. How could I make it through all my treatments last year without needing to be hospitalized and now this?! This crazy infection that’s causing so many problems. Then Rob got here with everything I could need (his presence was the best) and he brought the girls up after they got home from school. They’ve never seen me in the hospital or with IVs or anything like this… and I think they were ok. They ran into some friends of ours in the cafeteria, so they came up to visit as well. I fell asleep a couple of hours ago and was just woken up to check my vitals. And that’s when I realized the amazing peace in this room. It’s dark, with the rhythmic sound of the IV pump in the background. The giant “Cleveland Clinic” sign is right outside my window and is as bright as can be. But the way the green and blue light creeps through the hospital blinds is kind of beautiful. And when I peeked out in the hallway, I didn’t see or hear anyone. (I’m in the “back hallway” of the oncology floor, which is good because it’s the same floor but not near the room where I remember Allie was.) Aside from the poor woman in the room next to me who has been hacking up something all night, it’s pretty quiet and cool around here. I’ll probably feel different tomorrow, but tonight- I’m ok where I am.


Leave a comment

Within Normal limits

I never know these days what might trigger some random memories or negative feelings for me. On Tuesday, it was during a training at work where we had to review protocol including how to put on sterile gloves. And it immediately took me back to my chemo treatments when I would stare at the nurses while they put on their gloves (secretly making sure they stayed sterile and didn’t accidentally touch something they shouldn’t). I wanted to leave the room because it suddenly felt suffocating and uncomfortable. But I quickly reminded myself that I just needed to get through it and get out of there to get it done. Today, it was during a follow-up visit (which is at least a little more predictable). When I first got there, I had to fill out the SAME paper I fill out every time. It’s the paper that every woman getting a mammogram or ultrasound fills out. The problem is- it has a ton of questions about breasts! And I don’t like having to answer those after my mastectomy. I know, I’m probably just being overly sensitive. But I did put an asterisk by the upsetting questions with a paragraph explaining suggestions for how they could make the form more sensitive to women after mastectomies. I know… chill out, right? But the stress level is always a little elevated there and I guess today I was in the mood to share my sensitivities. The poor tech who took me back to prepare- she got an earful of my suggestions. Then we went into that same room with awful mustard-colored walls where I had my first ultrasound. (Sidenote: I wonder if it would be ok to contact a manager and suggest they change the paint color? I’m not kidding. That’s how much it bothers me.) Although this time, i immediately got a report back with great news and that’s when my feelings did a 180. My paper from the dr said “right axillary lymph node within normal limits”. There it is folks- “within normal limits”!! I didn’t know how much I loved those words until I heard them about my lymph node today. This was the reactive lymph node that they’ve monitored since surgery. And after today’s report, I don’t have to have any more follow-ups for it!

And then… (it gets better)…. I left to get a haircut!!!! Can you believe it?! My hair was long enough to need an actual cut! I guess technically it was a “trim” but at least now it has a shape. The girl who did it specializes in cutting curls- and shared a wealth of information about how to take care of this new head of hair. Who knew there was an entirely different world out there for maintenance of curly hair?!? So, turned out to be a good day. 🙂 I am having some pain in my right arm where scar banding has formed. It runs up under my armpit down to the inside of my elbow and makes it pretty sore. So I’m heading back to PT tomorrow to try to loosen it up and see what stretches I need to be doing again. Other than that, I can’t complain. Moving right along…

29213954_10215846207732929_5798532366336361104_n


Leave a comment

Gray Area

I love the color gray! Almost all the walls in our house are gray, half of our furniture is gray, my favorite coat and shoes are gray. If I go shopping for clothes, there’s a 90% chance that I’ll come home with a new gray shirt. I just feel so comfortable in/around that color in my environment.
However, I’m learning that I do not feel so comfortable in the emotional gray space that is this “life after cancer.” Yes, I’m “cancer free”, but I’m not done with procedures. Yes, treatment is technically over, but I still go to so many follow up visits so it doesn’t feel over. Yes, I feel better than before, but still nothing like myself yet. Nothing is black and white and I miss that. I’m in the middle of my 6 month wait for reconstructive surgery… and it’s (again) something that I need to be patient with. I’m uncomfortable with this unrecognizable body… it looks and feels so different than what I know. I’ve been slowly working out more, but it’s hard to see how much my body has weakened. I caught a virus from the girls last week and it took me SO long to recover from. They did bloodwork and made sure I was fine… it’s just that my history and my current medication makes it hard for my body to recover. And, an especially weird, potentially depressing issue of bathing suit shopping consumed me last week. Please friends, do not ever complain to me about how hard it is to find a comfortable bathing suit. There is nothing that compares to shopping for one after a bilateral mastectomy. Good news though- I found one! And, in time these physical issues will continue to improve. The emotional things will too, I presume. In my attempt to be thorough and address some emotional things, I attended a survivorship support group last week. Yikes. I still don’t know how to put into words what I felt there. I know I cried the whole way home. Nobody was mean or insensitive… I think it’s just living in this reality of post-cancer life. And every time I think that or write that, I am reminded how grateful I am to be able to include the word “post”. But my heart is still sad that I’ve had to live through this… with the gripping fear of hearing the word recurrence. Although I didn’t love the group, I did hear a good take-away point that I’ll paraphrase: Don’t live in the past- it’s too depressing. Don’t live in the future- it’s too anxiety provoking. You can only live in the present. So that is currently my main goal to focus on. If you’re looking for words to encourage any survivor- I highly suggest those ones. And as I sit here and think about the present, I’m reminded of some beautiful things. Rob turned 40 on Saturday! I’m so thankful that he’s 40 and thankful that I’m here to see it happen. I’ve been lucky enough to be his partner for 23 years!! And, as always, right after his birthday is the day that Amy went to heaven. So that is what we remember today. It’s a day that anyone who knew her will never forget. It’s the day our hearts broke open in a way that could never be filled again. Oh how I miss her and miss having her guidance in life. She left this world when she was just 29. So her loss reminds me to be grateful to be here at 37; and makes me appreciate Rob’s milestone even more. If she was here I wonder if she’d tell me that instead of trying to be comfortable in this gray space, maybe I should change my perspective by changing the colors around me. I think next time I buy a shirt I’ll be thinking of her and I’ll pick one that’s as bright blue as her eyes and the sky… because that’s true beauty. And I’ll never forget how comfortable I felt in that space with her.

29179049_10215815933376089_4106712019529314784_n