I have been holding onto this one for a little bit…

As a kid, I feel like I spent a good amount of time with my aunts and uncles – It was a perk of being the oldest, I guess.  There are several memories that I can recall clearly, others are pretty fuzzy.  I vividly remember being buckled in the front seat of Uncle Fave’s car, windows down, hair flying around and him yelling out to the car driving (fairly fast) next to him “This is my niece!” That is a story for another day though...I am not even really sure it actually happened, but I can see it in my head! 

Having aunts and uncles that were educators and coaches meant that they sometimes had long breaks for holidays and over the summer.  I remember spending Spring Breaks and some of my summers rotating stays with my aunts and uncles. 

One of my favorite summers I spent with Harold just happened to also be the same summer he introduced me to his now wife, Shawna.  I took a friend along with me and we went to Riley for a couple of weeks to attend basketball camp.  (Side note – I never really liked playing basketball, but Harold said I did, so there I was.)  It was a pretty great set up after the first day – my friend and I would attend the morning camp session then we had the rest of the day to go to the pool, to the mall with Shawna, or back to the gym to watch or help with the second session. If I am completely honest, I am pretty sure that we didn’t go to that second session often, especially after my friend learned that Jon McGraw spent his afternoons at the pool. :) After camp was over, I returned home and continued to play basketball at McLouth until my sophomore year.  I remember when I decided to quit playing, I just KNEW Harold was going to be so disappointed so I avoided telling him for as long as I could.  Inevitably, at the next family function he asked if I was ready for practice to start, or something along those lines and the only thing I could think to respond with was “I beat the school record for high jump!” and my mom announced that I decided not to play.  I may have lost my favorite-niece status after that, but I still have that high jump record! 😊

Harold and I started our fight with Kidney cancer right around the same time, our first surgeries were just around a year apart.  He handled his like a champ, smiling in a post op photo – I was definitely NOT smiling post-op, I was a lot less comfortable and a whole lot crankier.  

I think that the first text I sent him after his nephrectomy was just a little bit of encouragement that MY whiskey consumption had not been compromised by losing a kidney. You know, just in case he was worried about that.  I am pretty sure that information helped him.  😊

After that, we took turns checking in on each other – talking out the anxiety that happens with the frequent scans (that “scanxiety” is a real thing!) and the waiting through the next week for the appointment with the doctor to give the results.  We talked about treatment plans, prognosis, scan frequency.  Any research we did on supplements, dietary changes, similarities of our disease process – there were a lot - I felt like we shared it.  We celebrated the good news, and we encouraged and supported through the less than great reports.  He commented numerous times that we may just cash in one day, since there had not yet been a connection made through genetic testing - even though we were quite literally on the same course at the start.  

Harold always knew how to put my jumbled and chaotic thoughts into words – especially when it came to being so hard to explain how it feels to experience a cancer that is literally a wait and see what happens, when it happens.  He commented that it was “hard to explain to an outsider, even family, how much this affects you. It robs you of peace of mind” and then ended the conversation with “But hey! WE are insiders!”  Indeed, we were.  I will always be grateful to have had him beside me through our journey, and I promise to always remember that “even though it is just so frickin stressful, ya gotta enjoy every day”… I hope that I can always hear his voice in my head saying those words. 

Uncle Harold died on July 18th. He fought a courageous battle and won the fight on his terms.  I am sad, but so proud of him.  My heart hurts for Shawna - I cannot imagine the quiet and loneliness that comes after spending more than 30 years married to and living with someone that is gone so soon.

Cancer sucks.  Kidney Cancer sucks.

62 Mile Challenge

 In June, I committed to participating in a challenge to raise money and awareness for the American Cancer Society.  The goal was to walk 62 miles in the month of July.  I am proud to say that I did it - I actually exceeded the goal of 62 miles and I ended the challenge with just a little over 73 miles! Yay! I used a separate movement tracker outside of my workday - most days I did great, but some I did nothing. I am proud of myself and really do well with competition (even if it is just myself that I am trying to beat) so I may just keep pretending like I have a challenge to complete.  

Many days, I did not want to do anything but I still did.  A lot of the days in July were SO HOT - thank goodness for my Planet Fitness membership.  

Hi… remember me?

Today is my Grandma Shirley’s birthday. It’s the 9th one we have celebrated without her here. It’s become a little tradition to have ice cream (Baskin-Robbins specifically, if possible) to celebrate her. I wasn’t able to get BR today due to things beyond my control (power outage) but it didn’t stop me from having a full on meltdown in the parking lot. Sigh. 

I’m participating in a 62 mile challenge the month of July for the American Cancer Society.  I don’t track my steps or anything during a normal day, but do for the walking I do specifically for the challenge. I’m going to have to step it up over the next week. I let myself fall a days worth of miles behind over the weekend. I had been going to the gym after work, and that’s fine but a part of me wants to just be outside alone - but it’s SO HOT! 🥵 I have gained a little bit of weight so the added exercise will do me good, especially if I’m just sweating it all out! 

I’ve really been missing Cody..and Aiden. I’m just missing having all of my little chickens together and safe at home with me. Hopefully one day soon. They’re missing a lot of important time together. Time they can’t get back. It’s all just ugly and I hate it. 

I’ve found myself OBSESSED with the people in Ohio with all those children in their basement. So many questions… 

That’s all for now. I want to get back to writing regularly, I just get busy. Or forget. Or feel like nobody wants to read all my nonsense. And then I think, who cares? It’s therapeutic for me, but I do have concerns that something I write will be used against me by people who aren’t really friends. Delaney likes to say “they’re friend shaped, but not friends” and there couldn’t really be a more accurate description. A lot of shapes, not a whole lot of true friends. I’ve learned a lot about that over the last year. Oof. 

World Cancer Day 2020

It’s World Cancer Day, and I am ecstatic to announce that I am still cancer-free! Doctor called with the biopsy results late yesterday. The mass is not a met of RCC and doesn’t appear to be a malignancy at all. Whoop whoop!!  I have to follow up with a GI doc to determine what exactly it is and what to do about it. Dr Klingler mentioned a lot of words, and I remember hearing that it has a high risk of hemorrhage but basically, it’s an abnormal growth of liver cells - more specifically a hepatocellular adenoma.  I’ll see GI on February 18th and the 25th and will know more then. 

For now... Praise Jesus! 

I’ve been so stressed out this past month and a half over all of this, but kept myself busy. I worked today, but caught myself becoming so emotional just thinking about how truly blessed I am. Thank you all for your thoughts and prayers. 

January 2020

It’s been a busy month! I took - AND PASSED- the NCLEX-RN. Woohoo! I was too scared to even schedule it, then jumped in and took it two days later in Lincoln. I drove up and stayed at mom and dad’s the night before. It was so nice and quiet. 

KUMed FINALLY called me yesterday. The liver biopsy is scheduled for Monday, the 27th. Should have results within 3-5 business days, but I’m not going to hold my breath on that....it took three weeks to call me and schedule the procedure, when it shouldn’t have taken more than 3 days.  So, say a little prayer for me on Monday - and for little to no discomfort afterwards since I am scheduled to work Tuesday through Thursday. 

Ending the year with a .... biopsy.

First - I hope you all had a very Merry Christmas full of faith, love, family and food.  I worked Christmas Eve and met up with my husband and boys at church.  We spent time with Jeremy's mom and stayed up too late being silly.  Christmas morning we all slept in and took our time getting around.  Enjoyed a relaxed lunch and then headed out to Manhattan that evening, we were late but right on time for the most fun gift exchange every year.  We spent the night at my parent's, where Dad went off to graduate cardiac rehab - Congrats Papa! - and those lucky ducks headed off to Arizona yesterday.  I worked Friday, Saturday and Sunday....trying to keep my mind busy.  

Well....here it is.  The update that I have been avoiding. 

I guess I just thought that if I didn't talk about it, it would come and go and be done.  Unfortunately, my anxiety has gotten the better of me and I need to TALK about it.  

I had my follow up scans on the Friday before Christmas, the 20th.  This was the last set of scans before I was to move to annual visits... and I followed up with Dr Klingler on Monday the 23rd.  My MRI report did not come back clear this time.  There is a small area growing on/near my liver.  The good news is that IF it is malignant, it is not as aggressive as Bertha was, since it has only grown a small bit, and IF it is the same type as Bertha, the area will be removed surgically (and my hernias from my original incision will be repaired) and that will hopefully be the end of that.... with routine scans to continue indefinitely, of course.  

It is discouraging, but I am honestly not as terrified as I was with Bertha.  It is what it is...and it is what it will be.  There isn't any sense in getting worked up or upset about it - but I wont lie and say that I haven't shed a few tears.  I just feel like we have come so far and accomplished so much the past few years - it stinks that there has to be ANOTHER speed bump.  

So, tomorrow...December 31st...I will go in for a 

biopsy.  I should be home sometime in the evening, and will have the next day at home to recover.  Hopefully there will be results before the end of the week, but I will not be too surprised if it is next week before I hear anything.  I am starting to get a little bit concerned about the discomfort after the biopsy, especially since I learned that they are going to have to go between my ribs - that just does not sound so pleasant.  Sigh...just send up a prayer or two and hug my boys a little tight for me if you see them. 

   

Through all of it...

It’s been awhile, I know. I have a lot of things to ‘back blog’ on, but not tonight. 

I have been pretty busy at work, with school, and at home the past few months - so much has happened.  Tomorrow is already scan day again...I will admit that I was too busy to really dwell on it, but this day has been getting bigger and bigger in my mind.  I was bummed to have to work Sunday, as I was really feeling the strong pull to get to church that day. Pastor Scott closes church every Sunday with a prayer to God for our church family to “use them real good” as we all go out into our world for the week. 

I really enjoy my job, a lot.  There are days that I wonder if I’m where I’m supposed to be, am I doing what I’m best at? Am I using my skills and abilities the best way possible?  I don’t know if I am all of the time, but I was definitely in the right place on Sunday. 

There have been some things that have happened in my family the past few months that have just been really cruddy and we’ve cried, we’ve hurt, we’ve been scared and experienced immense sadness. There are joyous occasions happening as well, but sometimes it’s just too darn hard to see the light through the dark. I met a family yesterday that helped me see the light.  They gave me hope and a plan, and allowed me to help them at the same time. I think that we were both “used real good” yesterday and today. 

Sunday Reset

It’s been a rough week. One of those that just isn’t much fun. You know...the kind of week where your clothes don’t feel right, your body is achy, you can’t get enough sleep, can’t stop eating, keep arguing with your husband over dumb things that turn into bigger issues than they need to, and really cannot even stand to be around your kids. Heck, I couldn’t hardly stand to be around myself! It wasn’t ALL bad, there were some good times - like our impromptu dinner guests for homemade bread bowls and broccoli cheese soup one evening.  That was good night.

This week I got a little stressed out. I had agreed to do the musical message this Sunday several weeks ago, but in my true fashion I waited until just this week to figure out what it was I wanted to sing. There are so many great songs and how do you just choose one?! I reached out for suggestions from friends and in turn received even more choices. 

I finally decided last night that I probably had better get it figured out, my name was most likely already printed in the church bulletin. I had sang a song several months ago that I loved. Carrie had found it for me. (She lost her “song picker outer” privileges with this one though. How dare she have a busy life and family and not drop everything to help me!!)

Anyway, I tossed around the idea of just doing “In Christ Alone” again.  Who would know, besides me and Carrie, that I had just done it? Everyone. Everyone would know, because I have a big mouth and would have told everyone. Haha

Then I chose “Come to Jesus”... but just wasn’t feeling it when I would practice.  Finally this morning, I just told myself it was what it was and listened to the song I was going to song over and over and over. I wrote out the lyrics, and then practiced all the way to church with Ryan as my coach. He tried to be encouraging, but his face... even he thought it might be a bad idea.  It was rough. It really was not very good. I didn’t understand it... I sang along with JJ Heller in fantastic fashion, but as soon as I removed her voice...it just wasn’t pretty. My timing was off and my words kept getting caught or switched up. So, I prayed about it, and practiced again....with the same disappointing results. 

When I got to the church, Jeremy told me that Pastor Scott said I didn’t have to sing if I really didn’t want to... he had gone ahead of me and told him how nervous I was about it.  I considered going up and singing from the loft, at least nobody could see me up there! 

I opened my bulletin and saw my name in there. No turning back now!  As soon as I saw my name, I actually felt that it would be ok. It may not be perfect and it may not be pretty, but I knew that not one person there would ever say that. They would clap and it would be done, and hopefully someone would ask me to sing again.  Robin and Carrie both offered some encouragement and the service began. Can I just say, that was the fastest service leading up to my turn in the history of ever?!? 

I walked up there, took a deep breath, and ... I did it. Seriously...I impressed myself. If I hadn’t been so hot on the pulpit, I may have even given Jesus a little fist bump of thanks when I was done. 

As I was singing, I scanned the congregation....there’s a lot of people that I care about that are suffering.  Some of them were there, some were not. Their hearts are breaking, their worlds are shaking. My own world was shaking on this day, a year ago. I am so very thankful to be through it, and know that with time they’ll be through their troubles, too.  We are all in His hands. Do me a favor, please add my friends and church family to your thoughts and prayers. All of them, for whatever they’re dealing with... loss, divorce, sickness, exhaustion...whatever it may be.  

So... here’s to a fresh Sunday start for the upcoming week.  Put it in His hands my friends, the results are astounding! 

Happy New Year!

Happy New Year to all! You have probably heard me and several others muttering about how we cannot wait to be done with 2017.  Well, that’s true... saying it was a rough year is an understatement, but I would be lying if I said it was all bad. 

 I learned a lot from 2017.  We gained a lot from 2017.  We also lost a lot in 2017. 

I lost my idea of being invincible and that “something like that won’t ever happen to ME”. Well, it did, folks. And, while I’m so ready to be done with all things kidney and cancer, I know that it will stay with me forever. My scars may be ugly, but slowly they’re healing and lightening...and in a way, I’m thankful that they will always be there.  They remind me to pray, to thank God for all of the good things that are in my life.  They remind me that even when everything appears to be scary and hopeless, there is always something to be thankful for.  There are always prayers to be said and many that are answered. 

We lost people in 2017, and with them went a little piece of our hearts that will remain with them forever. I hope that those that we lost at their own hands are finally at peace and able to rest.  I wish we could go back so that you could see that you were not alone and that there were so many people that would do anything to change your actions that day. We miss you. 

To those that we lost to illness, and other medical issues, I rejoice that you are now perfect and whole and no longer in pain ... but our hearts ache for all of you.  We miss you. 

2017 gave me clarity, and reminded me of the value of good, true friends. I got rid of the people that made me feel inadequate, and who encouraged that nasty behavior that I felt sick about. As my dear friend always tells me, “you’re better than that, Nicole.”  He’s right. I’m better than that and I’ve chosen to surround myself with the people that inspire me to be better than average, to think before I speak, and to build others up, rather than tear them down. I am trying, and while I’m not perfect...I am definitely a better person today than I was a year ago.  I value the closeness that I have with my quarters, and while there are still some pennies, they are the extra shiny ones.  The shiny ones that may have been dull at one time.  They still add value to my life, and some are quickly becoming quarters. I’ve discarded the dull, dirty ones and to be honest... it’s an amazing feeling. I struggle at times, but I don’t ever feel remorse or wish I was back around them.  I will continue to pray that they, too can be better- but I’m not holding my breath. 

I am filled with great love for my family, my friends. I’m blessed to have friendships that become family and to share in their joys, including experiencing the love of their children. We are all building this wonderful little village, that I hope will continue into and beyond their generation.

I enjoy daily reminders of hope, encouragement and funnies from the friends I have chosen to surround myself with, and I can only hope that I am as good to them as they are to me. I am going to make a more conscious effort to let people know that I appreciate them and care for them...

I have changed jobs and while I do miss the people that I used to help care for, I am so happy with my position now. I am steadily working to change the letters following my name and have been given the most amazing support system! I am working full time at Stormont-Vail, on the stroke floor. I have learned so much in the last 3 months, and continue to learn new things every day. I have met some really great people and am excited to grow relationships with my new co-workers. 

In the end, 

I am honored to be walking along with those of you taking a part of my journey. I wish you many things including joy, love and health in 2018. May you always feel loved by those around you, supported in your struggles and victories, and always know that I am just a phone call, text or thought away from you should you need anything. There is nothing too big or too small for us to do together, and the good Lord willing, He will be holding our hands throughout it all.  

Much love, and thank you! ❤️

Hello Grief, my old familiar friend...

Throughout life, we meet people. Some of them become fixtures in your life, others just people we meet along the way.  If you’re lucky, you’ll gain four sisters and a brother and a slew of nieces and nephews, aunts and uncles and cousins when you meet those special people. I met Jeremy McCowan when I was 15 ... that’s 23 years ago. 23 years. I have so many words that I want to share.  Thoughts, memories, funny stories. I just can’t. I never thought that I would ever be experiencing this feeling, or that I would see the girls, Holly, the kids...hurting so badly. So many questions, what if’s, coulda, shoulda, woulda’s.  People that I love so very much will never be the same and are hurting so bad.  My heart, it just aches.   I swing from mad, to sad, to disbelief...I can only imagine that those emotions are amplified within the hearts of his wife, sisters, mother, and kids.  Seeing his smiling face attached to an obituary makes me sick in my stomach. I can’t even describe it.  I haven’t even been able to read the whole thing.  

Words just aren’t sufficient, and I’m not even going to try to pretend.  I know this post isn’t going to do his memory justice, but it’s too hard right now. 

I stole this picture from someone on Facebook. It is how I will always remember his face when he would laugh... that ornery laugh. And for some reason, I hear “when the $:(&! did we get ice cream?!”

I’m seeing a lot of suicide awareness and suicide prevention things. I do realize that September is suicide awareness month, but right now it is so raw.  I am struggling with having any faith in how any of that works. On Tuesday, a little after noon, I posted a number and offered my own self for anyone contemplating suicide. On Wednesday night or very early Thursday morning, Jeremy took his own life. I’m not offended that he didn’t take my post to heart...but I wasn’t the only one to post that I was there for someone. We have to figure out how to do more. How do we help them.. especially when we don’t always know that they need our help? 

I don’t know friends, I just don’t know. 

Six months...

I'm a little up in my feelings tonight. It's been 6 months since I was diagnosed with kidney cancer. I mean, who gets kidney cancer?!? It's more common than one would think, but I doubt that I would really know any of the things that I know about it if I wasn't affected by it.  I can tell you that it sucks, and there's no chemo or radiation or any treatment that is proven to even help deter or kill it.  It's so unpredictable and one never knows when or if it will come back. There are times that I feel like a ticking time bomb... just waiting for the next little explosion. I've been blessed in that I have very skilled and competent surgeons and they've done right by me. They've removed the cancer completely with each operation...if only there were some sort of filtering device to scrub the blood clean!  I'm not trying to make light of any of it, but I'm kind of running out of expendable organs and body parts to remove! I'm going to just keep on going... fighting the fight and living my life. I have been feeling really good, and worrying a bit less.  There are days that it is all I can think about, days that I fight back the tears and try to swallow the lump in my throat. There are also days that are almost like... normal. Not new normal, but old - before you were told you had cancer- normal.  Most of today felt a lot like before I had cancer normal. It was nice. 

I enrolled the boys for the 2017-2018 school year today.  Cody is a senior. This is it, his last year of high school. I don't even believe it. Time goes at warp speed when you're a parent. Perhaps the reality of this is a part of my emotions tonight?  I just cannot believe how grown my little chunky blue-eyed monkey is. Sigh.  

Ryan is a sophomore. 15.  I pray for that boy. Every day. He struggles and doesn't hide it well at times, but every once in awhile his pure, happy heart shines through.  He's come a long way. Onward and upward and I'm excited to see what the next few months and years bring for him. 

Braden is a 5th grader. I just can't even grasp that.  I will say that I'm pretty stoked that we will only be cranking out two more Pickens Science Fair projects....Hallelujah! 

To the Friends and Family of Adam Perkins...

First off, I want to express my deepest sympathy to you all in your devastating time of loss.  My heart hurts for you all and I will continue to lift you all up in prayer, asking for peace, healing, and understanding.  

Second, please know this: 

We hear you.  We see you.  We FEEL what you are feeling today.  We know that you are experiencing such a deep amount of pain and confusion.  We are here for you.  

I want to introduce you to someone.  

This is George (with my sister Amber and my dad). 

He was one of my best friends and he was the very first (non-family member) person that I met when I started going to school in McLouth in the 4th grade, 1989.  George was a fixture in my life and in my home for many years, he was my brother from another mother.  He may have spent more time in my home with my parents and sister than I did, at times.  George was one of my biggest cheerleaders, and was never slow to tell me when I messed up.  He was also right there to pick me up when I stumbled, and we had even entered an "agreement" of sorts....

You see, I made a bad choice, and made a big mess.  My family and a group of amazing friends saved me from myself, and most importantly, they saved my son.  George had made a mess of himself, too...in a MUCH less drastic way, of course.  We had agreed that if we were both in such a mess 5 years down the road, that we would just be together and save everyone else from our self-destructive and annoying ways 😂 Our agreement was in place for less than 12 days, it was made in George's old blue truck on the way to Red Fortune in Bonner Springs, where George had taken me to eat dinner to celebrate my homecoming while my mom watched the baby.  

George died on July 13, 2000.  He was 21 years old.  

He was enjoying a nice day at Perry Lake with friends when he went under to retrieve a dropped item and never came back up.  Search crews were called out and they searched and searched and searched.  The search ended late into the night, to resume the next day.  My dear friend came to retrieve a few if us that had gone out dancing, and we gathered at my parents' house to wait for news.  We had convinced ourselves that he must have become disoriented,  swam off and was on the shore somewhere - confused, but that we would find him alive.  His body was found the next morning, near where he went under to my understanding.  Our lives have never been the same.  

Your lives will never be the same. 

I do not personally know your Adam, but from what I have heard, and from what I can see from the people that I love that love him...He has a lot in common with our George.  To start, they are McLouthians, and that is kind of a big deal.  Once you are a McLouthian, you are one for life.  We all kind of gather each other up and take care of each other like we are all each other's family.  I am now a transplant Oskaloosan, and I love my new family fiercely, but there is nothing like HOME.  Your actual address does not matter.  You are ours and we are yours.    

Your Adam is also like our George ... larger than life.  One of a kind, and full of a genuine love for life, people, and fun.  I don't have very many memories of elementary, junior high or high school and beyond that don't include George.  He was there.  He was everywhere and we all loved it.  

Those memories are what are going to get you all through the next seconds, minutes, hours, days, weeks and months....talk about them, laugh and smile.  

You may find that the lake that you all once loved, or that maybe you didn't give much thought to, now brings about different feelings.  That's ok.  It's a great amenity to our community, but you can be mad at it.  Don't settle into that anger and camp there forever, because it is a beautiful part of our landscape, but it is ok to feel differently about it.  Actually, any and all feelings that you may have about anything and pretty much everything may change...and that is ok.  Take your time, process through.  You are going to hear nonsense chatter, worthless and judgmental opinions about what he should or should not have been doing, and there will be very hurtful and harmful things said.  Unfortunately for all of you, you have social media to fight ... there will be so many people that "know" all about it and will run their mouths to anyone who will listen, as some of you witnessed this evening.  Pay no attention to them, and do not stoop to their level - you are all better than that and you know Adam.  Stay true to him, to each other, and to yourselves.  Many people will want to place blame, but in this situation...there is nowhere to place it.  It was an accident. 

 A terrible, tragic accident.  

My number one piece of advice for you, that I hope that you will all grab onto and not forget is this:  LEAN ON ONE ANOTHER.  Stay together, grow and heal together. Many of our fondest memories were made in the depths of our despair of losing George.  I have always liked to think that he brought us all together in that way.  I still hold every single one of the people that banded together at my parent's home in those first 2 weeks of losing George in my heart closer than most.  We have mostly stayed in touch.  Of course, some of us could do better, but I hope they all know that I am always here for them.  

The next few days will be the busiest, and the most emotional.  Please know that your community, your county, and George's people are all thinking about you.  We are praying for you and wishing that we could take away your pain, for we would have never wished for another person to join our club.  We welcome you with open arms, but would be happier to never have to share this pain.  

Moving On...

I saw Dr Reussner this morning.  He removed the sutures from my neck - it was starting to become rather irritated, so that was a welcome relief.  It is still a bit inflamed (and quite sensitive) so hopefully that will be short lived.  I will return in the middle of July, to have labs drawn, and hopefully that will end my time with Dr R.  Not that I don't enjoy him - he is actually one of my favorites that I have encountered along this journey, but it is nice to close out a chapter in this book.  Though my time with him has been brief, he has helped me a lot!  My PTH dropped from 222 just prior to surgery to 26.7 as soon as the abnormal parathyroid was removed.  CRAZY!  I can say that my head feels more clear - as if I am regaining some mental clarity, and memory!  I can actually remember things!  My aches and pains are greatly reduced, and its so nice to not have that horrid deep ache in my back and abdomen.  We discussed following up with LMH Oncology and how I felt like a sitting duck, just waiting around for the next thing to pop up and disrupt our lives again.  We discussed our plans for seeking a second opinion and treatment plan in Tulsa, and asked for his thoughts and opinion on the matter.  Dr Reussner explained that he agreed with us and didn't feel comfortable allowing me to sit and wait for the next issue to arise and explained that while the Cancer Treatment Centers of America are probably not bad people, he felt that I would be best to be seen by KUMed on a more speedy timeline.  I would be able to be seen sooner, and stay closer to home.  The trip to Tulsa would have been a 10-ish day visit and I have zero paid time off from work left at this time, so... I have been referred to KUMed Oncology.  I am trying to make sense of it all and have the right answers and thoughts.  While I am waiting, I will try to return to a normal routine.  
I will return to work next week and go from there.  Hopefully I will not be too far out of the loop, and there will still be a need for me there.  I have missed a lot and am nowhere near "in the know" for sure.  I haven't heard much by way of friendly chatter from anyone there, so it must be busy.  

For the rest of this week and most of next, I have to continue to rest.  I am still on pretty strict activity restriction for at least 6 more days.  We have a lot of plans to just relax in our future.  The two younger boys had been with my parents since last Wednesday, and I met up with them and got them back today.  I missed them, but man...they talk a lot.  :)

Hopefully time will slow down just a bit, I want to make sure and take it all in and enjoy every day this summer.  Goodnight, Friends.  

Through the Mourning to the Morning...

*Jeremy deserves all of the credit for this, since he is the only reason I even know to listen to this music...

We spend a lot of time in Branson - at Silver Dollar City - in the Spring and Fall.  During the Bluegrass and BBQ Festival in May, and then the Country Music Weekend in September we get to sit and just enjoy music.  The Bluegrass and BBQ is my personal favorite - Its a month (or more?) of the country's best bluegrass bands, alternating dates and times and stages.  I have come to appreciate several of the bands, but my three top favorites are Flatt Lonesome, the Lonesome River Band and The Snyder Family.  There is a song that Flatt Lonesome did at the Bluegrass and BBQ Festival last summer that has played in a continuous loop in my head since February...

  It says...

In the morning, there is joy.
In the morning, there is peace.
In the morning, all things are brand new.

In the valley, there are choices
In the valley, there are voices
In the valley of sin and despair.
Keep walking through the valley, keep talking in the valley
To Jesus.  He'll always be there.

In the morning there is joy...
In the morning there is peace...
In the morning all things are brand new.

Through the MOURNING, through the pain...
He will wipe the tears away.
But in the MORNING, all things are brand new.

I just love it.  I really love all of their music.  They have the most amazing (and at the same time haunting) harmonizing.

 **Their cover of Dwight Yoakum's "You're the One"...oh man, you just have to hear them for yourself.  Here! ---->   https://www.youtube.com/watch?v=zCwwWwymrcY
Make sure you listen to In the Morning while you're there :)


I was going to sit and type out all of the things that I am mourning today, instead...I am choosing to focus on the Morning.  I have an appointment to see Dr Reussner and have my sutures removed tomorrow.  We are also going to discuss the pathology results...and the next step.  While ultimately, we know that the most likely next step is to travel to Tulsa or Houston, and we are trying to be ready for that.  I am hopeful that it will be within our own time frame and not an immediate need to complete type of thing....In His Hands.

I want to take just a minute to say thank you to everyone that has read, shared, and/or given to the YouCaring fundraiser page that our dear friend Laura has created for us.

https://www.youcaring.com/nikkipickens-846269

The shares, donations, comments and thoughts from so many well-wishers are truly appreciated and I will never be able to express the full depth of my gratitude to anyone.  To every single one of you that has uttered "How can I help?", to all of you lucky listeners within earshot when I decide to have a mini-melt down, for every penny given to our family, and to those of you who are ok with NOT talking about it....THANK YOU.  All of you.  There are not words that would ever be able to portray the depths of my gratitude.  It is a very humbling experience to be on this end of the benefit.  My heart is so full of love and the kind words that everyone has shared.  Thank you.

Time..it goes so fast.

I really need to be better about this.  I get so caught up in the day to day that I forget to take the time and blog about it all. 

Cody is a senior in high school and has signed into the delayed entry program to join the Marines. He will have his boot camp date already by Friday. 

Ryan is a sophomore, and he is 15. I miss the days when he was 4. His sweet little face and that voice, and all of his cute little songs. Sigh...

Braden is a 5th grader. He's playing baseball again this summer and it amazes me how much he improves and how well he does. I hope he sticks with it, he's a pretty decent ball player. 

I've been spending a lot of time in my hammock, and working. I have the next two weeks off, though... I'm having surgery (AGAIN) tomorrow. I'm running out of "extra" organs.  

When I originally went to the ER in January, blood tests showed an elevated calcium level- not terribly high, but high enough- along with the other abnormal values you have with a malignant neoplasm. (That is just a fancy term for cancer...but I like it better. It's...fancier.) After my nephrectomy, my calcium level dropped back to within normal range. Then, the headaches started and the body pain. Every scan was run to rule out the cancer recurring elsewhere and there was never any answer to the source of my pain. Pain meds didn't really help, and sometimes made my headache worse. That whole rebound effect. 

Anyway, Dr Gravino had communicated to Klingler that he hadn't found any obvious cause for discomfort and physical therapy wasn't cutting it, so Klingler ordered labs. Once again, calcium elevated. Elevated calcium can be a sign of trouble when it's cause is unknown, and suspect for cancer. So... when all of my scans were negative for growth (Thank you, Jesus!) he ordered more labs. Along with elevated calcium, my PTH (parathyroid hormone) was extremely high so he referred me to the ENT who said that I'm a very bizarre case and even questioned if I had been misdiagnosed or properly treated. That was a bit scary, but Jeremy and I are both very thankful for Dr Reussner and his amazing desire to advocate and help me. He called all of the pathology and scans into question and everyone took a second look to make sure that everything has been covered. Turns out, my RCC diagnosis is correct and I also have hyperparathyroidism. He still insists that the two are so very odd to have occur in such short time that while he is hopeful it's all coincidental, there's a strong possibility it is not. In simple terms, one or more of my parathyroid glands (we have four, only need one) are malfunctioning and have grown into masses/tumors, commonly called adenomas. They are releasing too much parathyroid hormone and causing my blood calcium levels to elevate, which is known to cause... headaches, body pain, memory loss, extreme fatigue, severe mood swings... EVERYTHING Jeremy and I have been complaining about in my case.

The plan is to go in tomorrow and seek out and remove the offending gland(s). The hope is that it's just one, but may be all four. If that is the case, 3 will be completely removed and the last one will be taken out, resected and implanted into my neck away from its original location. So strange, right?  

I had a scan done to give the dr an idea of what gland is the offending one... and the report said there is obvious abnormal adenomas present on the left, along with abnormal thyroid activity. Nothing conclusive on the right. He said that might happen... and that no matter what the scan said, he would be thoroughly examining all aspects of my thyroid and parathyroid glands. He also promised to make my incision "pretty", but I've been having nightmares of a collarbone to collarbone length incision.  I'm also having visions of becoming the modern day version of The Girl with the Green Ribbon. Anyone else still traumatized by that story? No...? Just me. Anyhow...tomorrow it is, then I wait for the pathology to be completed with the final verdict. Either way, we are going to go to Tulsa and be seen at the Cancer Treatment Center of America. Even if all they say is that I'm doing exactly what they would tell me to, I'll have the peace and knowledge that we are doing everything we can to keep me healthy. Whoosaaa, that cancer stuff sure does one hell of a number on one's psyche. 

I would appreciate your thoughts and prayers aimed my way at LMH tomorrow starting around noon. I'll update as soon as I can. Much love to you all.

Thankful...Grateful...BLESSED

I was SO NERVOUS for today.  I had myself worked up, and felt on the brink of tears or vomiting, or.....BOTH... all morning and most of the afternoon.  I was told to not eat or drink anything after 8 am.  So, after my coffee and toast at 7:30 -  I had to find things to do.  I sent out some invoices and caught up on some emails, and then took a blanket and a book and went out to the yard.  The weather today was PERFECT - my favorite.  I let the sun warm me up and read a little bit.  It made a bit wistful for my days as a stay at home momma...but the bills don't get paid very well when I'm not working!  Anyway....thankful for this beautiful day.

Off I went to LMH.  I was not fully prepared for this day!  Jeremy met me there and waited it out with me...I had tests and scans and talked to different people, and had more scans....and then I had to wait some more.  There was some weird scheduling glitch in my patient portal, so I was about an hour and 15 minutes too early to see Dr Klingler and was starving,  Jeremy took me to get a late lunch.  We went to whatever the name of that place is that is now in the old Carlos O'Kelley's building.  I was pleased, and had been craving some chips and salsa....so we ate, and then headed back for my 3:45 appointment.  I was blessed to run into my dear friend Jana....hadn't seen her in awhile, so that was a treat!  I was slightly concerned about the appearance of my urine sample, but nothing was said and I am a firm believer in "no news is good news" so I am not going to dwell on that too much.

I am not exactly sure how I ended up so deep into God's amazing grace, but I gladly accept it.  I am so grateful for everyone's thoughts and prayers....

My Chest CT and X-Rays are CLEAR, my MRI is NORMAL.  *My labs are still a bit wonky - my calcium is too high, and my PTH is too high - so I will be seeing an ENT on Friday for further testing on that, but at this time there is
"no evidence of metastatic malignant disease" in my lungs, liver, bones, brain, or any other area of my abdomen.   I have even "graduated" to scans every 6 months for the next 3 years as opposed to every 3 months.

Blessed be!  There is an answer to my prayers, and a response to my cries.

I have a little bit of anxiety and worry about Friday's appointment, but right now, I feel like I can take anything that is thrown at me.  It's nothing but a bump in the road, and for that... 

I am thankful, I am grateful & I am truly BLESSED.  

There was a point in time, early in this journey that I felt hopeless and terrified and just..sad.  Then came the pain and the hurting and the feeling that I was NEVER going to feel right or normal again.  I remember feeling angry briefly... I wept, and I panicked and I worried...and then I prayed.  I asked for you to pray and I saw that even strangers were praying.  Your thoughts, your prayers, and your support...I deeply appreciate every whisper, shout and thought.

Thank you....

Scanxiety...

It's been 3 months and 7 days since I received the phone call that changed everything. "I have gotten the pathology reports back, and it is as we discussed and thought. The mass we removed was, in fact, renal cell carcinoma..."

Tomorrow I am scheduled for my first round of follow up scans since surgery. I'm doing these every 3-6 months for the next 3 years.  

I have been reading about this thing that other RCC patients call "scanxiety"... scan anxiety... anxiety about what the upcoming scans may reveal. Breathe in, breathe out.  Erg...

Jeremy, Ryan and I went to Branson for the weekend to keep my mind busy and to see my favorite bluegrass band.  The distraction was nice, the weather was beautiful, but my attitude and fear took over a few times.  I've tried to stay busy today and got a lot done. Jeremy even hung my hammock up.  He's too good to me, I really should remember to thank him more. 

So, my friends... say a little prayer for me. I am hoping to hear, "I have looked over everything, and see no evidence of disease! See you in 3 months, have a great summer!" 

I have had a couple of CT scans and a bone scan, both of which were negative, thank God!  He's really answered my prayers the last 3.5 months.  I'm starting to fear that my blessings are wearing thin...and then I remember that there's not a number that can be placed on His love or the many ways He shows his appreciation for my faithfulness. 

I will sing to the Lord, for He has been good to me. ~Psalms 13:6

God is good all the time...

Our Big Spring Break Adventure!

I've been so busy (and overwhelmed!) with trying to get back to 'normal' that I've forgotten to post. I have created several entries in my head, but there wasn't ever any follow through. 

The boys and I went to Arizona for Spring Break ... we drove. All the way. Just us 4.  And....we are all still alive and living in the same house! 

My parents have gone to Arizona for the winter the past few years. I have always wanted to go, but it just never worked out and life got in the way. I have decided that life is too short to not do the things that make you happy, so there were no excuses this year. We went. It was a great trip.  We left early Saturday morning and arrived at Bonita Vista in Apache Junction by 6 pm Sunday evening. It was a cute little community with giant cactus (yes Cody, I know.. it's cacti) and gorgeous crepe myrtles and sunshine and a pool and Superstition Mountains and the Arizona Gift Shop close by, and... old people. Old people with rules that are perfect for old people and a bit restrictive for boys who think that they can just do what they want when they want, but we made it and we had a great time. Ryan struggled, but he survived! 😂

We spent a day visiting Tortilla Flats and the Goldfield Ghost Town and Mine.  We introduced the boys to In n Out Burger and the two bigs went on an arc trail ride with papa while B, my mom and I stayed behind doing laundry, swimming and just relaxing. The boys and I left their winter home on Thursday morning and took an alternate route home to see thing we found interesting along the way. We ended up at the Grand Canyon and in Colorado for the night and then did a backtrack and spent another night in Colorado before heading for Kansas and getting home around 7:30 Saturday night. I think I only pulled over once or twice to demand that the child mouthing me got out and walked the rest of the way.  Not too terrible for spending so many hours in a car together!! 

My parents packed up and left for home just the next day or two after we left...guess we went right in time!  

The Grand Canyon was magnificent. It was truly breathtaking. We arrived and it was snowing and foggy ... like true fog. We couldn't see anything...and were becoming a bit discouraged that we had wasted our time and money. We went ahead and went to a widening area and it was foggy and pretty much nothing. Until... suddenly, the fog/clouds seemed to just split and the sun shone through and there it was. It was amazing. 

(For some reason, the pictures aren't loading. I'll edit and add them in later, I guess!)

Two steps forward...finally!

I have gone back to work, and have slowly built my hours back up to a full day. I'm struggling a bit with the mornings, I just don't want to get moving very quickly. Even worse than I've been prior to this trial. 

Life seems to be getting back to normal and I don't have any surgical pain anymore! I can bend and breathe and wear jeans! If I could kick this annoying back pain, and the exhaustion that hits at random times, I would have no complaints. 

But, God is good and He has heard my cry.

 

I got the results of the genetic testing.  Aside from the immediate anxiety and turmoil of being diagnosed with cancer, I have worried constantly that there was the chance that I had some genetic component that I could have passed along to my boys.  I know that my mom has had the same fear, that she could have passed it to me. Well, fantastic news... all of the markers they tested me for are NEGATIVE! It was such a relief. Not only have I not passed anything along, but I won't be donating any more organs and parts from my body at the present time! (I was prepared to have a positive result and was planning to remove anything that could be removed to increase my chance of heading off trouble before it started...)

I was seen by the kidney specialist, Dr Solcher, last Wednesday.  Can I just say that I have an amazing care team? I really liked Dr Solcher, and appreciated that he kept it real with me. He pretty much told me that as long as I don't develop diabetes, high blood pressure, or any issue with kidney stones, that my right (and only) kidney doesn't really care what I put in my mouth. 😂 He wanted to run a few tests and check for protein in my urine.  My kidney function is perfect and little to no protein in my urine, so no need for meds and follow up in a year... a whole YEAR!! 

It's nice to see a slow down in my physician appointments. I feel like I've been checked out and seen more times in just the past 6 weeks than I have in the last 10 years. 

I've seen and talked to everyone ... even my "home base" Dr Gravino, who brought it to my attention that prior to this, I hadn't needed to be seen by his office since 2010.  Sure, he had seen me, but just with the boys.  Sigh...

So, now I just wait. I wait for May 8, which is scan day. Prayer warriors... pray for clear scans and no evidence of disease. In the meantime, I'll continue to pray and I'll try to stay busy to keep my scanxiety at bay. 

The struggle is real. 

Sharing Sunday

Today was Sharing Sunday at church.  I felt so many emotions as I sat and listened to how others are surviving and walking with Christ, and praising Him through their storms.  Those ladies are so strong, even as my favorite one said - "I am not amazing, but I have an amazing God".  Some of those emotions leaked right down my face, because they ARE strong and they ARE amazing and yes, our God IS an Amazing God.  While I am not quite ready to share my experience in front of the congregation, I feel compelled to type it out.

 

I am so anxious these days.  I feel completely and utterly out of control and I HATE it.  Emotionally, I cannot quite get a handle on things.  There is progress, though - It is better. I can actually get through a day without feeling terrified and sad and crying it out, but I hate what cancer does to people.  I hate that it takes away one's sense of health and security and thrusts them into uncertainty and unknowns and FEAR.  I hate that every little twinge of pain immediately makes me wonder if it has spread.  I hate that I feel like I need to call the doctor and demand a scan to be done right now to make sure that its all okay, and that it hasn't grown somewhere else at an unexplained rate of speed.  I feel like a liar when someone asks how I am doing and I reply that I am doing okay, but I also know that many of them are not fully prepared for me to say what I really feel sometimes...I am not fully prepared for it myself.  I am getting better about being real with my circle and my "quarters"...and giving those that really do mean well the "right" answer, even if it isn't the whole story.  I wont lie about it, but I will censor it.

Physically, I really AM doing good.  I have a tendency to over-do and wear myself out, but I will not admit it if you ask, so just don't.  I definitely have aches, pulling, and some lingering pain - but it is nothing compared to that first day...holy moly, that was bad.  So bad.

I want to talk for a minute about prayer.  

When Dr Klingler called me to tell me the pathology results, I was (almost) speechless."The results are what we thought and discussed, the mass is Renal Cell Carcinoma".  (That part didn't surprise me. I was prepared for that and I am not sure that I will ever be fully able to express my gratitude for Dr Trent and Kelley both being on shift that night in the ER - they are truly amazing and were very VERY good about being up front and honest with me. They were also very effective at convincing me to go one step at a time.  Just one at a time.  I wish I could properly thank them...I just have no idea right now HOW.  Kelley commented that we now share a special bond that cannot be broken...no doubt, sister.  NO DOUBT.  There will not be a day in my life that I will not think about them, and the impact that their care has had on me.  Heavy sigh...)  The part that I could not understand was... "Your lymph nodes were clear."

What?!?  HOW?!?!

Don't get me wrong - I am thankful... grateful... BLESSED.  BUT - I saw the scans.  I heard all of the measurements and I researched every bit of the information given to me.  We already had an oncology consult ready...I had no doubt that there would be chemo or radiation therapy, most likely both, in my very near future.  HOW that monster grew so big so fast and did not spread is ... a miracle.  

When I went in to see Dr Klingler for my post-surgical check up, I told him that when he had called that day, I was expecting to hear something very different.  He admitted to me that he thought that he would be telling me something very different than what he did.  (No wonder he couldn't make eye contact with my mom or answer her questions to her satisfaction....he didn't think it was going to be very good at all!) He then patted me on the shoulder, as I wept.  Poor guy, he must think I am a nutjob!  :)  

I truly and completely believe that the power of prayer is beyond anything we can imagine. 

My faith has been strong for as long as I can remember, and I have seen amazing things happen to others.  Somehow, I lost sight of the importance of gathering with my church family, and life got busy and I stopped going to church regularly, and then I stopped going altogether.  We have a lot of work to do, but it is truly a family affair now.  For so many years (almost 15) I asked Jeremy to go to church with me.  He never would.  He was never mean about it, he just simply stated that it made him uncomfortable.  About 3 years ago, he started making comments about our boys needing to go to church, and then that he would like for us all to go.  Finally, we all went, and we are still going.  We have established a bit of a routine...Church, and then family lunch.  Sometimes it works out really well, and Lane and Carrie and the boys join us for lunch.  Those are my favorites.  They are some of my favorite people.  Anyway...back to my point.  The only explanation that I have for my current situation is prayer.  So many people prayed, so many had amazing words of support and comfort, a few even brought us food...My Cup Runneth Over.  (By the way - please be patient with me...I am working on those thank you cards!)
 
My 5 year survival rate is 70-75%, there is a strong chance that I will fight this battle again, and possibly more than once.  I am not going to dwell on that, and neither should you.  ONE DAY AT A TIME.  Every so often, I may pull out that report and read through it and weep, and then I will pull myself together and say my thanks to God.  I will send up my prayers of gratitude and thanks for Kelley and Dr Trent...Dr Klinger and Lawrence Oncology.   I will thank Him for my husband, sons, parents and family...for my friends that have become family, the true friends that I have made in life and at work, our church family, and the many many genuine, good, and caring people that sent up a prayer for me and my family in our time of need.  I will thank Him for this humbling experience....and I will also give cancer the middle finger.  I read something once that made me giggle at the time, but that now feels very different - "I wish that cancer would get cancer and die..."  Yeah, I do wish cancer would go away, but it is hard to wish death on anything - no matter how abstract it may be - when your own mortality is shoved in your face.

Whew...that was quite the "share".  Happy Sunday... erm, Monday.