Tag Archives: anxiety

But What If

“But what if you are sick?!” She questioned, bottom lip quivering, with all of the composure a 4 year old can muster.  My mind raced with all the intricacies of cancer and how best to soften that blow for a child.  Teary-eyed, I explained to her that if that was the case, that God would take care of us.

But she didn’t want to hear that.  She wanted to hear that Mommy was ok and that Mommy wasn’t sick.  My little girl, who is usually an eager sleeper, refused to go to bed because she knew when she went to sleep that when she woke up I wouldn’t be there.  

So much for routine scans!  “Routine scans” are a mysterious blessing not afforded to all cancer patients and not guaranteed to us at any point.  There was a time in my cancer journey that those words, “routine scans”, sounded like a pipe dream.  Literally something that just wasn’t for me because my time had come and gone.  I always feel great until the night before scans.  And even then, the bad feelings are usually reserved for just me.  But tonight, my daughter caught wind of something that she never really fully understood before.  Yes, Mommy was sick through most of her life but from what she can remember, Mommy has always been there.  Tonight as I laid her down for bed, she wrestled with the fact that I wouldn’t be there when she woke up.

“Mommy just needs to go to the doctor for the day so they can tell me I’m not sick!”  I told her.  She seemed relieved at first, until she thought about it more.  But what if…

Our son is almost 7 and he has always just sort of understood all of this.  Not that it hasn’t been hard on him, but he always took it in stride and seemed to understand.  He didn’t like when I wasn’t there but he got it.  This is the first time Brit has asked so many questions and she just is not ok with the answers.  And I don’t blame her, I just wasn’t ready for this tonight.

Tonight as I was laying with her while she fell asleep (something she begged me for tonight, and never does this) she kept trying to figure out ways, through tear-soaked cheeks that she would get through tomorrow.  She finally said, “Ok Mommy, I will sleep as late as I can then pretend you are at the store and will be home at dinner.  Mommy, promise me you will be home by dinner!”

Of course I can’t promise any such thing, but I see my broken-hearted child before me.  Faced, for the first time in her life, with the understanding that Mommy may not always be there.  And so I try to assure her, with as much confidence as I can muster, that I will do my absolute best to be home for dinner tomorrow.  

My son comes out of his room, curious as to why his sister is crying.  And I have to tell him that he needs to be there for her tomorrow and things will be different but that he can make sure she’s ok.  On the surface, I’m only talking about tomorrow.  But in my heart, I know I’m talking much longer term.

What if?  Well, if something shows up, then I will try my best to be here.  And if I can’t, I need him to step in and help her when I can’t.  It’s symbolic and it’s heavy and it’s real.  I have scans tomorrow and they may be just fine.  But what if…

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Cancer…Free? 

As many of you know, I had my scans and visit with my oncologist today.  I got to meet with him after my full-body PET/CT and brain MRI and his initial read of the scans were that they looked good!  Like as in, no new cancer and zero growth of the old.  And, not to brag, but I’m pretty sure at one point his exact words were “Your brain looks Great”. So maybe there’s still that pesky brain tumor.  And maybe I have scar tissue from radiation that’s affecting my memory and some other cognitive functions, but still.  It looks great.  A win is a win in my book!

I also received some very comforting validation that as people were on this drug longer And longer (remember, when I started keytruda it was still in clinical trial) they have seen certain chronic issues emerge like…wait for it…headaches!!!  I am plagued by headaches every day And I tell ya I felt like I was going crazy because I’ve had every test in the book but there didn’t seem to be a reason for them.  Well there we go.  Validation.

And as a little cherry on top, I don’t have to go back in three months.  Oh no, I get to spread out my PET scans and oncology visits to every 4 months and my brain MRIs to every 8 months! I never, ever expected that.  He asked if I would feel anxious spacing them out and I told him that usually I forget all of this exists until a few days before and then I’m a wreck so we are spreading them out! Woo hoo!!  Now I can adequately worry about other things, like our first baby going off to kindergarten in a few short weeks….

Ok, so maybe I’m not officially “cancer free” but I do feel free from cancer, and quite officially, I might add.  I breathed a huge sigh of relief today that I’ve been holding in for a very, very long time. I mean come on! I was supposed to die by Christmas of 2014! This is insane…but a good kind of insane haha.

Thanks guys so so so much for all the love.  Every message, note, text, snapchat, encouraging verse and everything else seriously made my day and had me smiling and feeling the love. ❤ I seriously am blessed by those God has put in my path, and it does not go unnoticed.

A rainbow so vivid the other night that my jaw dropped. It was right over our church ❤

There’s always hope and God’s promises are always true!

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Cancer Maintenance and the Mind Games

*deep breath* Ok so tomorrow I have a PET scan.  And I’m sort of freaking out about it.  Why?  I’m not entirely sure.  I don’t have any specific symptoms screaming “cancer!!” but anything out of the ordinary plants a seed of doubt.  Plants a thought or a twinge that the scan will find something horrible and that this reprieve I’ve been granted will be over before I could even know it.  The day before a PET scan is always the most difficult.

For those new to my story, I have stage 4 metastatic melanoma.  Long, long story short: melanoma on forehead removed 2011, metastasis to neck lymph nodes found in 2013, surgery (full neck dissection with transplant), head and neck radiation, ipilimumab, metastasis (brain tumor, lungs, and hip bone) found in May 2014, keytruda, and cancer has been held at bay for over a year now.  I have officially lived a year and a half after my prognosis said I’d die before Christmas of 2014.  It’s still so wild to think about…

So every three months come scan time we do this all over again: the doubt, the fear, the crazy scenarios that play out in my mind non-stop.  Torturing me with the pain of imagining my own death.  Logically I fully comprehend that I shouldn’t even be here and that I should just be happy with whatever outcome I’m given.  But I’m human, and no amount of time will ever seem like enough.  I am desperate to see my children (now 5 and 3) grow up.  And while that seems like just an insane pipe dream for someone in my shoes, I’m at least desperate for them to be old enough when I pass that they’ll remember me.  Why?  It’s purely selfish, honestly.  I can admit that.  I’ve thought this through many many times and that truly is what it is.  And to make things even better (worse?) tomorrow, when I have scans and a marathon of appointments at Penn, is my husband and I’s 8th wedding anniversary.  What a way to spend it, huh?

Just one blip on the radar could mean the end.  And I’m not trying to sound dramatic, that’s just the reality that I am faced with every three months.  I’ve lived the last three to the fullest.  Everything has been as normal as I could have ever imagined it would be again.  When people would ask me how I am and I’d say, “I’m doing really well!” I have actually meant it for the first time in years.  It’s been fantastic.  And I’m scared it’s gonna end.  That it will be taken from me just like that.  That I’ll be back to worry, fear, treatments, and being physically helpless all over again. 

I will not lie, this is, for whatever reason, a very heavy burden for me to bear.  I almost deal better with things when they’re looking bad.  But now this mounting anxiety is hitting a fever pitch.  Today was my quarterly trip to the dermatologist (only one spot biopsied this time!) and when she asked me how I was doing (I seriously have the best and most caring dermatologist) I couldn’t help but mention that this mental struggle is weighing me down today.  “It’s always the day before scans,” I explain, fighting back tears.  “Well we’ve all been so impressed with how strong you’ve been through all of this, it’s ok to have tough days.”

Strong.  A word I do not think was ever in my life attributed to me before cancer.  Courageous?  Nope.  Brave?  Lol…no.  Inspiring?  Not so much.  But when cancer hit, I knew deep down it was an opportunity for me to grow closer with God and so I believe if these things are seen in me then it is only by His grace and mercy.

So right now, at this very moment, I’m really struggling.  It was moments like this that I would always pull out the very large laundry basket that I had in a closet downstairs that held all of the cards and notes people had given me since the very beginning of this.  I had kept every single one without exception.  Well about a month ago, we discovered that a pipe had leaked in that closet and that everything contained in that basket was completely ruined.  Gone.  It had to be thrown out and I’m just devastated by it right now. 

So I’ll just sit here for a while and cry and then head to bed.  I feel sad and lonely, and although I certainly have no reason to feel lonely it’s just what happens.  I just so desperately want to cling to this normalcy that I’ve been blessed with these past few months.  Of course, if it’s not God’s will then I really don’t want any part of it, but it sure would be nice if it was.  I mean, I’ve so much wanted to distance myself from this cancer and the identity I have in it that I haven’t even blogged in a long long time.  Denial ain’t just a river in Egypt, I suppose.

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I’m just not ready to give this up yet.  And it’s selfish and it’s desperate and it’s not even up to me.  Maybe that’s where the problem lies.  Within this frustration is the realization that I have zero control over my own situation.

God’s gonna have to help me work on this.

What I REALLY Want to Say to My Oncologist…

Ahh, everyone’s favorite part after a test or scan: waiting on results!  Yay!  Guys, I’m not trying to brag but I think I’m handling it really well this time.  I had a little extra time last night when I was, you know, not sleeping so I made a few memes.  Just for fun.  No particular theme.

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And my personal favorite….

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I’ll let you know if I hear anything.  I’m not too worried about it obviously 😉

Shocking!

So my oncologist dropped a bombshell on me on Tuesday. 

Apparently…I have anxiety.

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I know that my doctor cares and is truly only looking out for me. But I couldn’t help but think, “Doesn’t everyone in this situation?  How many of your patients don’t?”

Like is it really that weird that a 30 year old with stage 4 melanoma who is married with 2 little kids and has already outlived her prognosis might be a little uneasy here?  How someone with mets in her brain, hip bone, and lung might be a tad bit curious about what those little turds might be up to? Is it soooo far-fetched that someone whose chemo is taming these mets for the moment might be an eensy weensy bit concerned considering the last MRI showed something possibly suspicious with my brain tumor? And how about the fact that I had a seizure last Wednesday (even on my meds. Not a big one, but a seizure nonetheless) that makes it even worse??

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Preach it, Mr. Brown

Then tack on the fact that they are, for whatever reason, making it extremely difficult to schedule said brain MRI that I’m overdue for. There is a lot riding on this, so excuse me if I seem a little frazzled! (Sorry, I must have put on my sassy pants this morning).

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I guess he somehow sensed my slight inner turmoil and began to talk about calming strategies.  It seemed odd.  Not unappreciated, but odd.

What kind of things do I already do?  I’m glad you asked!

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He also had some fun suggestions!  Like meditation!

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I almost lol’d at that one. I’m imagining me trying to meditate and be all zen while the kids are doing one of three things: not leaving me alone, trying to kill each other, or teaming up together and getting into mischief while mommy’s humming “ommmm”.

Cancer is a constant mind game. It’s always there in the back of your mind, and I’m certain that even if I would ever hear that I was “cured” some of these anxieties would linger in the back of my mind forever.  Maybe that’s just me, or maybe it’s just how the disease changes you, not just physically, but mentally as well.

I don’t see this as an issue, quite honestly. Maybe a little lack of sleep and maybe some headaches that I wouldn’t have otherwise, but I see this as a normal part of the cancer experience, a normal part of the human experience.  It’s tense and it’s ugly sometimes, but I’ve become more mindful of balance in my life and am afforded what probably looks like a pretty stress-free life if you didn’t know the situation. 

Plus I know I will feel better after I get this MRI. I just need to know, ya know?

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Longing For What I Can’t Have

This coming Friday, October 24th, will mark a year since my life was changed forever. A year since my diagnosis. A year since my whole life as I knew it was taken from me, never again to be returned. Don’t get me wrong, I’m grateful that I’m doing as well as I am, a lot of stage 4 patients do not feel this good and are not as physically capable as I still am and have not gotten some of the positive results that I’ve been getting and I do not take that for granted. This fact in and of itself is usually enough to shake me out of any pity party I may be having, I mean, why waste time being all bummed out while I still have some semblance of health left? Unfortunately, for the last few days, that just hasn’t been cutting it.

I think part of the problem is that my one year cancer-versary is coming up and I find it impossible to not ruminate on the way things used to be. I miss the life I had. I miss the stress of getting the kids ready for daycare and I miss being reunited with them and hearing all of Evan’s stories about his day. I miss working. I miss my job a lot. I miss driving and independence. I miss feeling productive and valuable. Life was stressful, and hectic, and crazy, and….normal. It was a normal life, and I miss that terribly.

These days, I find myself drawing more and more inward. I don’t know if it’s some sort of permanent damage from the last seizure or maybe it’s the new chemo, either way, if I thought focusing was hard before, it’s getting darn near impossible now. My home is beginning to feel more like a cage or prison, I mean, I’m pretty much always here. But, on the same token, the world outside is getting less and less inviting and everyday seems a little bigger and a little scarier than the day before and this makes me more and more hesitant to go anywhere or do anything, no matter how anxious I am to leave.

I’ve gotten into a bad habit of not caring in any form or fashion how I look (it’s really easy to let yourself go in this situation haha) so 99.9% of my time now I look exactly like this:

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I stopped caring that people who may not know me might be weirded out by my face or what they might think when they saw it. I stopped wearing makeup and never, ever do my hair anymore.

But last night as I lay in bed unable to sleep, I was kind of counting my losses and all of these things kept resounding in my head. I have let this cancer seep into every single part of my being, it controls my thoughts, my appearance, my day to day life, just about everything in my life now is either determined by or the result of my cancer.

Today I said, “Enough! I am not letting this cancer control my day today!” So, I was unsupervised with the kids this morning while my hubby went hunting, it was hard, as I tire easily, but I did it! And then, we decided to go to our friends’ kid’s birthday party and I knew there would be people there that I don’t know, so I thought, “I’m not gonna look all cancery today! I’m gonna hide it and try to be normal!”

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Please excuse the selfies, I’m really bad at them and really don’t like them, but I use them today to prove a point: cancer still won this round. Even if I did look “normal”.

Conversations are still hard, my memory is shot, I can’t focus for anything, my brain is slow, and foggy, and awkward, there are connections that I can almost feel my brain trying to make, but it just can’t now and that’s not really something I can hide. I knew that cancer could take my life, but I never imagined that it could take my spirit, my personality, my “me-ness”, whatever you want to call it.

I’m still adjusting to this new normal. I pray that it can be used for God’s glory somehow. It’s kind of neat now though because as my brain slips further and further away from my grasp, I feel a closer connection to God and a huge openness to His Spirit that is almost a little surprising to me while it’s happening. For example, the last time I spoke at a church, I had my 30 minute message all prepared, only to get up there and not say anything that I had written. The Spirit led me a different way and since I’m too slow to object, I went along with it haha. But in all seriousness, it went really well and was a really cool experience.

I realize that as I am becoming more and more attuned to the leadings of the Spirit, I probably look pretty batty sometimes. I’ve taken to constantly scribbling ideas or thoughts down as they come knowing that I will surely forget them if I don’t. The notepad in my phone is full of dozens of “random” thoughts, phrases, paragraphs, ideas, concepts, just the oddest things. Maybe someday I’ll be able to make sense of all this, because if I don’t, someone’s gonna look through my phone after I die and think I was some kind of lunatic!

Haha, perhaps there is still a purpose for all of this and I pray that God keeps using me. But I also pray that I can get back to being my more outgoing, gregarious self again here soon, because I miss her, she is way more fun than the pensive, anxious, introspective Kim that’s been here lately 😉

The Struggle is Real

Scanxiety. It’s the anxiety one feels when they know they have an upcoming test or scan, or even worse in my opinion, waiting for results. Waiting for test results is the most excruciating, claustrophobic, helpless feeling. You know there are dozens of possible outcomes but can’t even come close to planning for any one of them.

On Friday, I had a spine MRI and a PET scan. I’m anxious to know if it’s cancer that has spread from my hip bone into my spine that’s causing all of my back pain. The MRI will tell us this. Then there’s that pesky PET scan. The last one I had confirmed that the cancer had spread to my hip bone and into the lymph nodes in my lungs beyond the brain tumor that we already knew about. Hmm. What fun surprises might await me this time??

And before you tell me “not to think like that” just know that it’s impossible. I am sure of my salvation, all of my strength comes from God, and my faith is unshaken so far in this journey, but I am also human. And, like everyone else, I feel anxious about things from time to time. For me, the hardest part by far is the not knowing. I feel so much better knowing, even though it’s often not good news.

But I’m not the only one who’s anxious about something, am I? I met two amazing women in this last trip to Philly for my tests. One was a woman giving me comfort as I waited for my MRI. She has stage 4 brain cancer, glioblastoma, and has had it for four years. She looked amazing and healthy and gave me a lot of encouragement. She even emailed me a daily devotional that helps her. Who knows, maybe we will stay in touch! And then I met a beautiful young woman when I went in for my PET scan. She was in the beginning stages of all this. I sat down and she looked at me as soon as I did and said, “Can I give you a hug?” And I’m like “sure!” She then started bawling and told me that she was just diagnosed with lymphoma and they are doing a PET scan to see how far it’s spread so they can stage her and create a treatment plan. I felt so bad for her. In that moment I just wanted to take it from her. I wanted to tell her everything would be ok. But all I managed to get out before they called her back was that the procedure itself wasn’t too bad. I got her name and told her I would pray for her.

The worst part of a PET scan is the prep. You gotta get the radioactive stuff injected and then drink this barium stuff and then sit there, as still as possible for about an hour. I tend to try to sleep. So as I’m dozing off, a lady from the front desk comes in and goes, “Did you give some girl a hug?” I, obviously confused, said I had and she handed me this:

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That made my day and made me feel like the day wasn’t a total waste. I was ready before this day even started to completely wash my hands of the whole day (minus the part where I met my new niece!!). I wanted to just get through, just make it home and pretend like none of it never happened, but that wasn’t God’s plan. I have met many amazing people through this journey, but very few that I get to keep in contact with. That’s special. And really exciting.

We are all most likely anxious about something, right? Maybe it’s a job, our marriage, lonliness, our financial situation, infertility, whatever. It can often make us feel restless and unfocused. I often find myself trying to distract myself just so I don’t have to mentally deal with all of these “heavy” things all the time. But God reminded me on Friday that we are to carry each other’s burdens. If I had kept to myself, like my plan was, I wouldn’t have met these women that although our time together was brief, taught me a lot. It’s so, so hard sometimes, but I’d encourage all of us, no matter what we may be anxious about, to keep our minds focused on God’s purpose in it and to keep our hearts open to the struggles and stories of others. God wants to use us, and our stories, to affect others for His glory. It all makes perfect sense when we allow it to play out how He would want it. Just reading a Bible verse telling us not to be anxious probably won’t help all that much, but reading it, believing it, and being obedient even when it’s hard or the path is unclear can help build our character and perseverance in these times of high anxiety.

Here is a song that I’ve listened to many, many times before, but as I listened to it yesterday in the light of being in a place of waiting, I just began to cry. And cry. And cry. I’m learning that coming to these places of brokenness before the Lord are so unbelievably healing for my soul. The words are so powerful. Of course I’m going to urge you to listen, not because it’s a great song (although it is), but because I know the peaceful place it helped get me to, and I would love for you to feel that same freedom from these heavy burdens, no matter what you’re carrying.

And, of course, it’s Hillsong lol

I will stay should the world by me fold
Lift up my hands as the darkness falls
I will wait and hold fast to Your word
Heart on Your heart and my eyes on Yours

Hillsong “Stay and Wait”