Holding Space

With Shelly Vaughn

Tag Archives: cancer


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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.”


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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.

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I wonder if they’ll know…

I wonder if they’ll know…

That they are the reason people call me brave. Without them, I would not have gotten out of bed sometimes. Getting them ready for school meant getting up and moving when I’d rather stay in bed. Taking care of them while at my lowest, meant living.

That finding people to help with them has brought me closer to certain friends and has given me the gift of watching others love on my kids. Hearing people offer to help take them places has meant seeing light shine brightly from others.

That everytime someone has sent them a gift or a card it has made my heart fuller than gifts for myself. The first cards that came in the mail for them, from other siblings whose mom had been through cancer, remain two of the most cherished pieces of paper in our home.

That watching them sleep brings a sense of peace that is indescribable- it has been that way since they were babies.

How their giggles strike a chord deep inside of me- more beautiful than all the music I could ever listen to. Hearing them laugh with each other brings its own special peace in my soul- as I know they’re growing a special bond as sisters that no one else in the world will be able to relate to. And they’ll have each other long after Rob and I aren’t here.

That my biggest fear has not been for me leaving them. It’s that they would have to go through the grief of losing their mom.

That I worry more about how they are getting through this than how I am.

That I’m beyond proud of their resilience and sweet souls as we navigate these waters without guidance. What to say? How much to share? How to calm their worries. What is normal now? Should I tell them I’m scared? Should I let them see my scars? What does this mean for their futures? What if? What if not? My worries for them go far beyond anything for myself.

That caring for them, raising them, has been such a beautiful gift- given to us and wholly appreciated- now more than ever. We’ve been graciously given the task of raising these two beautiful, sweet, hilarious, emotional, loving souls. But they are not ours… they are His. Our Creator who made us, who knows them, who holds them through me. I am so thankful that they were created in my womb. The most miraculous feelings this body has ever known was growing those two inside of it. Though my body feels like it’s failing me now, it certainly didn’t then. The breasts that have recently caused such sorrow did their job to feed those two. These hormones that “fed” cancer also did their part to create life a decade ago. And I can be nothing but grateful for that.  

You know, chemo didn’t just make me feel bad- it made me feel like a different person. My best identity change was when I became a mother to my girls. It was planned, welcomed, expected. This year my identity changed- unplanned, unwelcomed, unexpected- so much that I couldn’t recognize myself. I was no longer strong, healthy, happy, easy going. Physical changes forced me to be ok with a body I couldn’t control. Emotional changes forced me to feel differently than ever before. That was an intentional “ly”. My emotional responses and interactions with others were so unlike anything I was used to. And one of the most noticeable struggles was how hard it was to laugh. It’s just so hard to do when your body is not well. But you know the two people who could make me laugh no matter what- those two beauties I have the privilege of calling my daughters. They are precious souls who show love just as often as they fight with each other. Thank you to everyone holding space with me who have loved on them. And to those of you who haven’t met them yet- you’re missing out. I think they’re a couple of the best humans I know. Watch for them to change your world…. just like they’ve changed mine.

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Grow through what you go through

Today, since I left work, I’ve been strangely hung up on the biological side of cancer and what my body just went through. And it really is crazy. So I thought I’d share a quick biology lesson on cancer (and Jessica Hartman may need to clarify if it’s wrong.)

Everyone has some cancer-ish cells in their body (there’s discrepancy about how to describe and label these cells). The cells need some kind of “trigger” to start dividing and become malignant. Many different factors can act as triggers- chemicals, environmental factors, dietary contributors, etc. And sometimes a person’s genetics dictates whether cells become malignant or not. Once “triggered”, the cancer cells no longer have normal checks and balances in place that control and limit cell division. So they grow out of control and rapidly divide. Chemo is treatment that kills all rapidly dividing cells in your body. So it kills those cancer cells, but also kills normal cells that are naturally rapidly dividing (blood cells; cells in the mouth, stomach, and bowel; and hair follicles). This is why chemo patients have low blood counts, mouth sores, nausea, diarrhea, and hair loss.

A little more info about my chemo drugs: Adriamycin is considered an “antitumor antibiotic”. It’s made from natural products produced by species of a soil fungus (I know… soil fungus?!?). Cytoxan is a drug that interferes with the duplication of DNA and the creation of RNA. And Taxol is a plant alkaloid- made from plants, specifically the bark of the Pacific Yew Tree. Then there are additional chemo drugs that other cancer patients use that are derived from the periwinkle plant, the May Apple plant, and the Asian “Happy Tree”.

So we have this unfair genetic predisposition (some of us), some cancer-potential cells already in our bodies, then an exposure to something that triggers them to multiply out of control. And the only way to stop it is to administer poison- made from plants with pleasant-sounding names like the Yew Tree and the “Happy tree” for goodness sake… can it be any more ironic?

I had something in my body that was growing out of control and could kill me- and I treated it with drugs that kill. It’s like a battle of which can be most deadly. And thankfully the one I was hoping for won out in my body. But the extent to which that needed to happen means that the rest of my body is still trying to recover- even 3 months after my last treatment. It’s a long process that I’m still trying to be patient with. It’s not easy; but after all that time of destruction on a cellular level, I’m thankful to be “building back up” again.

“Grow through what you go through.”


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No More Port!

Great news- I am getting my port taken out on Friday!! This Friday! Two days from now!! I’m so excited (if you can’t tell). I had an appointment scheduled for later in the month, but they called today to bump it up earlier. I know that treatment really isn’t done until radiation. But this port was so symbolic of the beginning of treatment… and the removal of it is symbolic that the end is near. That thing was my lifeline- I hate it and I love it all at once. I’m so glad to get it out of my body. OUT!! GONE!! Along with the cancer!
(Oh- and my return to work went well today. I had an appointment in the morning so it was a shorter day than usual. It was a nice way to ease back into things. And it was really great seeing my co-workers. Seeing them meant getting hugs from friends- which was actually really energizing and uplifting. I am thankful.)


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Deep Waters

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The girls went back to school today, starting 2nd and 4th grade this year. As the beginning of school marks the end of their summer break, I reflect back on what this summer has been like for them. I was so concerned that my issues would hinder their fun or make their memories of summer 2017 boring or miserable. Thanks to all of you who helped keep them entertained, and brought meals to us so that we could have more “down time” with them, I would say we collectively made their summer break pretty fun for them. It’s part of why I love this amazing group of people- not just holding space with me through this, but being part of the community/family keeping my girls playful and innocent.

There was one change with the girls this summer that I got to enjoy just recently. They have been to several big swimming pools this summer and had been telling me how well they can both swim now. It wasn’t until last week that I felt well enough to get out of the house with them and watch them swim at a friend’s house. They weren’t kidding. They’re swimming in deep water; jumping in without fear; and doing the handstands, flips, and underwater tea parties that every young girl should spend hours doing. It made me remember doing all of the same things with my sister, cousins, and friends every summer. It also made me think back to several years ago when we were members of Waterworks pool. The girls were both much younger and leery of the water. They would stand on the edge and hesitate to jump in the pool into my arms as I waited in the water. I knew they were safe no matter what, but they couldn’t feel it until they were actually in the water with arms around my neck and feet tucked around my waist feeling safe and secure again… and able to smile.

I can relate to that now in a different way. A cancer diagnosis suddenly threw me into water that I wasn’t ready for. It was so deep and frightening. My head barely stayed above the water at times and for a while I panicked- floundering around, reaching for anything around me to make me feel safe- just wishing I could be in a different place where my feet could safely touch the ground. But when I calmed enough, I could feel God’s arms right there. He was standing in the pool just waiting for me to realize He’s there to keep me safe in His embrace. To hold me in the deep water when I cannot stand on my own. So I feel Him now. I know He’s there. And I feel almost safe. Not enough that I’ve taken a breath and allowed myself to fully relax in His arms. (I don’t know when that will happen as I’ve heard from several survivors that the fear of recurrence is strong for a while.) But I feel like I’m getting so much closer to that now that I have the “all clear” from pathology. Honestly, I’d still like to be out of the pool watching from a chaise lounge as I sit poolside eating grapes in the warmth of summer. But you know what, I’m learning that I don’t get to choose where I want to be. But I can choose to trust that God’s got me no matter where I end up. 💕

“…You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand
And I will call upon Your name
And keep my eyes above the waves
When oceans rise, my soul will rest in Your embrace
For I am Yours and You are mine…”
– Oceans (Hillsong United)


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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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Looking Forward

I forgot to post from last week’s treatment… so I’ll do it tonight before tomorrow’s treatment. My friend, Christina Dawson, came with me. She was so helpful at the beginning of this diagnosis- helping me navigate this foreign world and connecting me with resources I have used over the last few months. It was nice to spend time with her as we’re nearing the end of chemo. I have 3 more treatments left now. I can do this… I can do 3 more!

The most notable improvement has been with my mouth sores. They are getting better and I am able to enjoy eating some foods. Mostly bland foods, but at least I can eat. My stomach is still getting used to knowing what to do with solids, but this will all improve over time.

My body is still very weak because of my weight loss and fatigue. I look forward to feeling well enough to start working out again and building some muscle. I’m not used to feeling so weak and tired for so long. The other side effects- neuropathy and bone pain continue to be tolerable.

One other difference- if you look very closely in just the right light you can see hair growing back on my head. It’s so light blonde that you can barely tell it’s there. I will continue to wash with shampoo and conditioner… can’t let a few hairs get greasy. Go Cavs and Go Pens! This is an exciting time of year… for a lot of things.

Addendum: not 10 minutes after I wrote that, I was complaining to Rob about how sore my fingernails are and whining that I don’t want to go to treatment tomorrow. I fluctuate from positive to negative just like that. Or maybe I’m always feeling some of both. Hard to describe, but it is what it is.