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.    

Science Fair

I loathe the science fair. I get the point, I understand that science is important... I am a nurse, I get it. BUT...I still hate it. We start looking and find all of these great ideas in January and then we set them aside, to revisit in a couple of weeks and then BAM!  Projects are due tomorrow. 

I have to hand it to Braden...he's made this year the easiest and least stressful. Cody was always so awesome with his projects but was terrible with documenting and creating his display board. Ryan liked to make the mess. His involvement pretty much ended there. Haha. Braden did this one start to finish, even his board! He only needed me for taking the pictures, printing them, and typing. He dictated word for word and called me out when I added or changed his words. He's so funny. I hope he scores well... it's not perfect, but he did it and it's his. 

Diagnosing...Staging...Grading...Treating.

I saw Dr Huerter at Lawrence Oncology Center today.  He had the final report from pathology and my official diagnosis. 

My diagnosis is stage II, grade III Renal Cell Carcinoma

Dr Klingler told me on the phone Wednesday, and Dr Huerter repeated today, that they are quite confident that the cancer was confined to my left kidney and that the surgery performed got it all out.  The surgery was a "radical left nephrectomy with lymph node and adrenal gland removal". It was definitely "radical", but not in the good TMNT sense of the word. 😉 

The pathology report clearly states that the "tumor is confined to the kidney, with no extension into the renal vessels identified.  No carcinoma identified in the adrenal gland... two parahilar lymph nodes with no evidence of metastatic carcinoma identified."  

PRAISE JESUS. 

 

There is not a need for any treatments or radiation at this time, and I'll need to be watched and followed closely over the next 5 years for recurrence or metastasis.  He told us (Jeremy, my mom and myself) that there's no medical proof anywhere that shows there are any treatments available that are effective in prolonging someone's life following a kidney cancer diagnosis. He explained by saying that he could have two people with the exact same diagnosis and could administer chemotherapy (or radiation or whatever treatment) to one of them and not the other and that the treated person would not have any added benefit from fighting off or avoiding recurrence. Of course, if the cancer decided to metastasize-  grow in an alternative location- there are different treatment options and that's a whole new ballgame. We will deal with that if the time ever comes, it's not a priority or an issue at this point in time, and God willing, won't ever be.  Dr Huerter said that he and his staff are looking at clinical trials and such, but I am not really comfortable at this point in time potentially sacrificing my health to have no guarantee that it will actually help another person. I know that sounds very selfish, but for today, I'm going to be selfish. I am going to focus on myself and my boys right now. They are what matter to me the most today. 

I have an appointment scheduled with Dr Klingler on Monday, and he will have hopefully been in contact with Dr Huerter, to determine my follow up schedule.  It sounded like I'll be on a schedule of scans every 3-6 months for 3 years, and annually up to 5 years.  Baseline post-nephrectomy scans will be scheduled and obtained in the next couple of weeks and then we will go from there. 

Thank you all for your thoughts, prayers, cards, food... we deeply appreciate everything. I'm trying to recuperate from surgery and I'm still trying to wrap my head around all of this. It's been a very intense 16 days. I can honestly say that I was not prepared for what Monday brought- that was a horrendous awful pain.   Despite seeing the words on paper today, I still feel apprehensive. Almost as if I'm just waiting for the other shoe to drop.  I had told myself (and anyone that would listen! Lol) that I would feel better after the oncology appointment on Friday. I don't really feel better, though...I want confirmation right now that there is not a single bit of that mess left in there, and I didn't really get that. I want every scan and lab test and able-bodied, clear-minded cancer specialist in the world to go over every result with their expertise and all return to me with the same plan and consensus...maybe then I'll be able to take a deep breath and truly believe that it is gone.   For now, I don't get that, but I do have an amazing support group that I've tried to not unleash the crazy, irrational thoughts on.  Well, friends...hold on! 

Haha...just kidding. 

I'm grateful and thankful for all that I have and what I have been given. I truly love and appreciate all of you that have sent a prayer, made a comment, sent a card offered a meal and wished me well.. I'll never be able to adequately express my gratitude to you. Please just know that from the bottom of my heart, I thank you. 

 

I am not the 10%, but things could be so much worse.

Monday....Jeremy took me to LMH and we got all checked in at 5:45 am.  It was time to tell Bertha goodbye, and good riddance.  I had the best team - they were truly amazing.  I was visited by the anesthesiologist and then Dr Klingler - yes, I asked for pictures and he assured me that they would love to get some for me, I will be seeing them on Monday when I have my followup appointment with him.  

I don't remember leaving that little room, or Jeremy telling me goodbye.  The next thing I know, I am hurting.  Bad.  The worst pain I had ever experienced.  I hope that I NEVER have to go through that again, and that nobody I know ever has to experience it either.  EVER.  I was seriously MISERABLE.  I couldn't eat, couldn't move, and I am pretty sure that I complained and cried all day long.  I really am not sure how I lived through that, it was so bad.      

At some point, everyone left.  I had visitors - bless your hearts!  I apologize! I didn't know that Aunt Shawna and Taylor had come, or Jeremy's parents.  I do remember my mom, Jeremy and my bestie Shauna being there.  I finally got some relief and was able to eat some jello and sat up in the chair for a bit...I knew that the more I moved the better off I would be, but it was horrendous!

I tried to sleep, tried to lay completely still, as long as I didn't move - everything was at least tolerable.  My nurses were really great, but I would have preferred that they not wake me up every time they came in.  I finally asked them to not wake me and to just do what they needed to do.  I was able to get some sleep after that.  The lab lady and the dining services girl showed up knocking on the door around 5:30 am on Tuesday morning...at that point I gave up on sleeping.  I still had a lot of pain, but it was NOTHING like the day before.  Dr Klingler came to see me at about 7:20 am.  He did his assessment, told me that my lone kidney was functioning well and that my lab work all looked great.  He stated that he would be back to see me later on, and said that he would contact me as soon as he had the pathology report back.  He suggested that I might possibly be able to go home later (I was pretty sure he was crazy!) - if I could get up and around, and get my pain under control.  I was able to get the catheter out and discontinue IV antibiotics and fluids ...saying goodbye to the catheter wasn't a big deal, but I wont lie, I was nervous about the IV being out.  I really liked those meds, and I was TERRIFIED to feel like I did the day before.  Turns out, I had it in until it was time to leave, and I did not need any more pain meds through it.  I was able to do a lot more for myself as the day went on, and I went back and forth about leaving.  Dr Klingler came in and visited with me again.  Still no pathology report but he promised to call me as soon as he had anything, and I requested that he just give me the results over the phone, rather than having to drive in again.   He told me that I would be coming in to see him on Monday, and that I would be seen by Oncology either Thursday or Friday, and sent a nurse to have the unit secretary get that set up for me.  They returned with an appointment time of 10:00 am on Wednesday or 8:30 am on Friday.  As much as I would have loved to have gotten it done and over with as soon as possible, it wasn't likely that the pathology report would be completed in time for an appointment on Wednesday.  So, Friday it is.  I hung out a bit longer and then decided that I was ready to go home.  I am sure that Natalie and Nicole and Kristina were ready for me to go, too!  haha  They were great to me, I hope I wasn't too big of a pain for them.  Jeremy got me loaded up and off we went.  I realized after we got home that I left behind one of the images the Dr Klingler got for me.  Bummer.

The ride home was a bit rough, but we made it.  We got home just in time for my momma and Cody to be walking out the door to go see Eric Church.  They had a great time.  I am glad for that.  

I slept on the couch (in the recliner on one end) and was all snug and supported by pillows.  I got up this morning, took a shower, and got dressed.  Made me feel halfway human again.  Today was a bit testy.  I was on edge and could not keep my mind occupied so in turn I became really agitated and snippy, mom was anxious, and Jeremy was too.  He had several things that he wanted get done, but was worried if he left then he would miss the phone call.  It was a very long day.  I have tried to spread out the doses of pain meds and realize that it is still just a bit too soon for that.  I am now trying to catch back up and get ahead of it...having a kidney removed does not compare in any way, shape, or form to having a total hysterectomy.  I seriously underestimated this process and was not prepared for this type of pain or recovery AT ALL.  

FINALLY Dr Klingler called me at 5:27 pm.  

He stated that he had gotten the results from pathology and it was as we suspected and I have grade 3 Renal Cell Carcinoma.  He said that the lymph nodes were clear, which is great news! and he feels that the cancer was hopefully contained to the kidney and adrenal gland, which have been removed.  I will be seen by Dr Huerter at LMH in oncology and we will go from there.  Best case is that there is no need for further treatment at this time, but that I will need to follow up and just keep an eye on things.  I will then follow up with Dr Klingler in his office Monday and decide at that time if I will be followed by oncology from there on out or Dr Klingler, or both.  

So.  There it is.  While I have a huge relief that the lymph nodes were clear, I also have a cancer diagnosis, and I am scared.  Very scared.  I also have a lot of research to do, and a million questions for Friday.  

I am thankful for my family, friends and those of you that have prayed for me, thought of me, wished me good things.  I am thankful for LMH ... Dr Trent and Kelley, Dr Klingler and Natalie, Ashley, Nicole and Kristina.  I am thankful for speedy action and amazing communication, and I am thankful for pain meds.  I am thankful that I believe in a God that is good....and that is so good to me, even through trials.  

 

Let's not google that...

I told my mom right away..."Don't be googling that...don't google anything"  

I know better.  

Jennifer and Amie have said it daily, and they even shoot me the evil eye when I start off a sentence with "so, I was doing some research last night, and..." 

I CANNOT HELP IT.  

I want to know everything. The problem here is that I know too much and not enough at the same time.  

I know this...  There is a mass on my left kidney.  I know that it measures no less than 9 cm and up to 11 cm. (Depends on which scan is being looked at and who is interpreting it)  I know that if there is a mass on your kidney that is less than 7 cm, the kidney can possibly be saved and just the mass removed.  I also know that my mass is bigger than that and so therefore, my whole kidney will be removed.  There are lymph nodes nearby that will also be removed.  

I do not know this....and will not know until my physician tells me, despite what the google machine says, because you and I both know that I already have it all figured out...  

What the mass is made of - benign or malignant cells and what kind of impact this will have on us in the future... 

where it came from...

when it got there...  

Wait...I lie, I (kind of) do know that answer.  

I know that when I had a CT scan done on March 1, 2010 and my appendix removed, Dr Klingler said there was no evidence of a mass or any other abnormality present.  So, stupid Bertha has grown 9 -11 cm in 6 years and 11 months, IF she decided to take up residence the day that CT was done.  I also know that Dr Klingler told Jeremy that renal masses typically grow about 3mm per year.  So, not only is she intrusive and stupid, she is a fatass...growing all warp speed and stuff.  

Another thing that I know is that nobody can give me an answer as to what caused this.  I am a former smoker.  I have not smoked a cigarette in 15 months, and was not a terribly heavy smoker anyway.  One is too many, but whatever....what is done is done.  I am also obese.  I am not a male, or over the age of 55, nor do I misuse narcotics or OTC pain meds.  I have always had really great BP, even being obese....and to my knowledge, there isn't  family history of kidney disease or issues.  It is all just so weird.

I am not going to be discouraged.  Aside from the hematuria, back/side pain, nausea/vomiting *which may be nerves too* and elevated calcium levels...

I am almost disappointed that I got stuck with the ones I have, rather than the loss of weight and appetite that I could have.  :)

Anyway, I am feeling good today - Zofran and Percocet are doing their jobs.  Monday is quickly approaching.

I feel like I keep repeating myself.  It isn't my intention.  I actually logged on to blog about Piggy Beach and swimming with elephants in Thailand.  I want to do those things some day.  

I take back my "Don't google that" directive....

DEFINITELY google Piggy Beach and Swimming with Elephants in Thailand

Goodnight All.  

5 days

5 days have passed and there's 5 days until surgery.  I'm not too worked up about only having one kidney, but it is a weird thing to think about and comprehend. Dr Klingler told me that I should adjust just fine and that it probably won't even really be something that I'll even notice. I hope he is right. I still would like a straight answer as to what caused this to happen, and so quickly. At the same time, maybe it's better to not think about all of that. For whatever reason, now was the time and to be honest, had I not gone in Thursday night, I probably wouldn't have gone at all until something else presented. At this point, my most alarming "symptom" is no longer present and I would just continue complaining that our bed needs replaced.  I shudder to think about what could be had I put it off and not gone in. Yikes. I mean, our bed definitely stinks and needs replaced but that's not going to happen right now. 

I haven't really learned anything new, except what I've researched on my own. I have been able to pull up the scans on the disc and scroll through all of the images, and I do that at least twice a day. My back has become more bothersome, but a part of me thinks it's more to do with the fact that someone has told me that there is something in there that can cause pain. I don't need the Percocet often and Tylenol is pretty effective for now most of the time. I am experiencing a lot of nausea, a few episodes of vomiting. My nerves are probably not helping that matter much. 

Amie (my coworker) has named the mass Bertha. We get a lot of good belly laughs at the most inappropriate comments made about this whole ordeal by us both equally, but it really keeps me sane.  She's adamant that I'm the 10% and to be honest, I'm starting to believe her. I'm too scared not to. 

I am doing ok. I know that you all know that I'm lying, because I'm terrified, but really.. I am doing ok right now.  I would be lying if I said I didn't worry, or that I don't cry at random times, but it's more from my fear of the unknown and the feeling of having absolutely no control over anything. I've given it up to God, it's His will and it just is what it is ...but I'm still hopeful it ISN'T. It occurred to me today that it would be the most awesome thing ever if they get me on the operating table, are all set up and going and can't find anything. I would keep my kidney and this would have all been a big joke. Wouldn't that be something?  

I'm so thankful and grateful (and overwhelmed with emotion) by the texts, calls, emails, messages and cards. Just the fact that you are all taking time to simply say you're thinking about me or praying for me is so deeply touching. Thank you. I realized today, while talking with Pastor Scott, that I am able to talk about it without losing my composure.  That's huge. I didn't even talk on the phone to anyone but my mom and my Aunt Shawna until Saturday.  See? I'm good!  Haha  

We have told the boys what I feel they need to know. Cody knows everything. He's able to process it and can handle it and while I can tell he's concerned, he's also been silent strength for me. He has had a lot of things to process and deal with this last week and he's handling it all so gracefully.  He makes this momma proud, all three of them do, really.   Ryan and Braden know that I'm having surgery to remove my kidney and they know that it is because there's something on it that shouldn't be, and that there will be further testing. I haven't really gone into detail about what they're looking for or the odds I'm facing. I can't do that to them without definite answers and a plan on place.  After all of that testing is done, there may be no need for any treatment and then they'll be all worried and I just don't want that for them. They are very smart boys and they know there's more to it, but it's one day at a time and I'm not willing to put such a heavy weight on them. They won't be blindsided, and we greatly appreciate you respecting our decision on the best way to handle this. 

I just wanted to give an update. I'm sure I'll have more to say later this week...it does help a lot to just write.  I have no idea of any of it even makes any sense to anyone else, but it clears my mind some.  

Please say a prayer for those hurting and in sorrow, our community has been hit by a very sad loss. Nick, may you Rest In Peace and be free from the demons you fought. You will be missed dearly.

Please, if anyone needs to talk, or feels alone...know that you are not. There is nothing that you have to carry alone, I'm here. My phone is always on and my door is always open.  We can never know truly what any other person is fighting in their own head and I hope that you know that you're important.  No questions, no judgement...just support. Even the darkest night will end and the sun will rise. 

The day everything changed...

Several people are aware of what is going on, but even more are not.

I still don't have all of the answers, and I don't know what my future truly holds. What I do know is that my family and I may need a lot of support and prayers in the coming weeks. 

I began typing my thoughts out in my notes app on my phone, so that when the time came I would remember. I'm just going to copy and paste them here. It may be an incredible amount of nothing but word vomit, lol, but it made me feel so much better to just type it all out. 

January 19, 2017

Day one. 

Maybe it's not really day one of anything, or maybe it's day one of what will change all of our lives forever. 

I want to remember this experience. 

Every moment of it. 

Being scared to death. 

Feeling like Dr Caleb Trent might be the most compassionate physician I've ever met...

Bawling my eyes out through the second CT.  Not sure I'll ever not hear that voice "take a deep breath and hold it"  followed by "you can breathe". 

Sweet Kelley Rockhold. Thank the good Lord for her tonight. 

It all started this morning around 9:30 or so. Went to the bathroom, thought the water looked a little funny when I flushed but honestly chalked it up to that rather, erm... rough? Time trying to poop. It's a daily struggle. 

Around 11, I went to the bathroom again and this time there was no question. That was blood in the toilet. And that was a large clot in there too. (I'm obsessed with what's in the toilet when I get up, and it's quite common for me to snap a picture of it...ask my buddy Krista!) So, being the kind sharing friend that I am, show my office buddy Amie. She isn't impressed. I get back to my desk, start working and then I feel some pretty sudden and sharp pressing pain in my lower back area, on the left side. Painful enough I make a comment and have to reposition myself.  The trip to the toilet was even more colorful. At the constant prodding by Amie to "CALL YOUR DOCTOR, Bro!!"  I decide it's time to email the facility physician and see what she thinks. She suggests it could be a small number of things and encourages me to call my pcp. I call and leave a message with dr Gravino's nurse at 2:30. She calls me back at 5:05. Tells me that he's not going to prescribe me any pain meds unless he sees me. (I didn't ask for pain meds, nor did I mention any pain in my message) Anyway, she tells me I can be seen the following afternoon, but thinks I should go to an urgent care or something. I tell her I will and if I need to follow up, I'll call back. Amie is leaving for the day and says, "you better go. I mean it."  She gave me the look and I am not sure I want to cross her today, haha. 

I decide I'll pack up my stuff, take the few things I need to finish home and plan to swing by prompt care on the way home. The phone rings and it's Dr G himself, says to go to the ER...urgent care will probably charge me to be seen and then send me there anyway, so go to LMH. 

Fine. Whatever. 

I get to LMH, there's two people in the waiting room and then it's like every "special" case in the county is there!  They take me back, I tell them what's up and pee in the cup. A lady comes and says hi and then that she's going to out in some orders for me. Then, I get Kelley. I love Kelley. I tell her what's up, tell her my pain is maybe a 3? It's not really pain, just a tad uncomfortable if I stay in the same position too long. She clicks through the computer has a confused look on her face and says that there are orders in but isn't sure why if my pain is only a 3.  We wonder why we are a drug addicted society .. orders were placed for me to have fentanyl and toradol and fluids via IV, but the girl that put them in never even asked if I was in pain. Kelley cancels the fentanyl and toradol order, as well as the pregnancy test.  Don't really need that! 

They're so busy, they've run out of rooms. I say I'm fine to sit in a chair, and I go over to an area off to the side. Dr Trent comes in, we chat and I explain my issue. Sounds like it's pretty cut and dry and it's an assumed kidney stone until I mention the blood clots and show the picture.  Then lab lady comes in and finishes up, I get whisked off to CT. "Take a deep breath and hold it...........you can breathe!" 

I'm back in my comfy chair in my side room I'm sharing with the young girl that tried to explain to me in the waiting room that she has a "high pain tolerance and that even if her face and squinty eyes aren't showing any pain, her body is screaming and writhing in pain on the inside".  Whatever girlfriend. You're in the right place, because cute little pregnant Jamie will hook you right up to some toradol and fentanyl without ever even asking if you're having any pain, lol. 

I'm actually chuckling to myself while listening to the crazy happening all around me when someone else comes in and says she's going to take me to the conference room and Dr Trent is going to talk to me about my test results. Dun dun dunnnnnnn...rocks drop in my stomach. I go to a little room with a little round table and he comes in and says that there are no stones and no infection and I'm saying that's good, and starting to feel nervous and my brain is clicking in with "hey dummy, he's ruled out all the best case scenarios this isn't going to be good.." and then he says (after the longest pause EVER) that there's a mass on the upper pole of my left kidney. Uhh..what? Yes. It's actually a really large mass. Appears to be 9 cm. I mutter something about that not being what I was expecting at all and of course instantly I'm all hot eyed and panicked. He stutters back, yeah me either and to be honest when I first saw it I felt just like you may right now, and as I looked at his face I saw he was genuinely upset and that scared me more but I sure didn't let him know that. He said that I'm his age and that these things shouldn't be happening to people our age. He said something else about his wife and her age and while I was actually calmed by his nonsense chatter, I didn't really hear it. But I did appreciate it. Deeply. 

So what's next? Well, the mass is suspect for renal cell carcinoma which metastasizes very rapidly. They need a ct scan with contrast too. I ask if that's tonight or..? And he says no probably not. You will need to go see a nephrologist and while you're completely able to choose your own, I'm hoping you will choose dr Klingler as he's the best. He continues to tell me about how they are seriously the best and has a great short story about someone having an issue and having to try many options and something about nephrology tubes,  and Dr Klingler entering from above and below all laparoscopic and I nod and say that's great... again, I'm not hearing most of it. He stops talking abruptly and says that he's actually going to go call him now and give him his report and he will be back. He comes back says they want the ct with contrast tonight and then gives me my records and a disc with the images on it. 

I go back to an actual room this time and they prep me for the test. Place IV, change into a gown, etc. then Kelley and Dr Trent both come visit and we just chat a bit. I'm a mess. I've text Jeremy and told him. I'm trying to respond to the snapchats that are flying in because my dumbass sent everyone a picture of my red pee in the specimen cup with no other details.  It's tough to backtrack out of that when you're scared to death and not sure whether to run or laugh, or run...so, I'm sorry for those of you that I kind of ignored or brushed off with a bullshit answer. I didn't know what else to say. 

By the time I am retrieved by the red headed ct girl, I'm pretty distraught and while I am holding it together I'm screaming on the inside and my eyes just keep leaking. Oh, and I'm  getting that look. You know the look. The one where they know more about what's inside your body than you do but they can't actually tell you anything? Yep. That's it. She's a sweet girl. We joke a bit about how I really didn't want to ever see her again and she agrees.  But in a nice way. I get on the table, she hooks up the contrast. Tears keep rolling. She offers a tissue and I lose it right there on that damn table. And... what the hell is it with the brain, as soon as it knows there's something that doesn't belong it decides to tell you you're hurting when you weren't before? Stupid brain. So she explains to be that the contrast will make me feel like I'm peeing on myself but she promises I'm not. Sure enough...so strange. Then she pushes me in. And it all comes crashing around me. The whir of the machine, the clicking and beeping and the sweet, calm "take a deep breath and hold it...buzz whir click beep....you can breathe!" I'm sobbing. It's all so surreal. I'm a mother. I have babies. I had my problem organ removed so that this wouldn't happen to me...JUST FOUR MONTHS AGO!!! How... HOW... do I have a mass on my kidney bigger than the kidney itself in that short of time. Surely it wasn't there then and missed...but it's so big now... or ...? Right?!?  

CT is complete and we walk to X-ray for a chest X-ray. (I've since learned that it's because renal cancer very commonly and quickly spreads to the lungs. This whole ordeal is just awesome.)

And yes, we walked. I refused a wheelchair and I'm still refusing pain meds, it doesn't hurt. Well, until you told me it should, because now... I may need a xanax or 12.  

Chest X-ray complete. Back to my room. A bit later, Dr Trent brings me another report sheet. It's now approximately 10 cm and actually has the words "suspect for renal cell carcinoma" on it...along with "several enlarged periaortic lymph nodes".  I'm not an oncology nurse, but i know that when lymph node involvement is mentioned it becomes a bit scarier in my head. 

Dr Trent says he thinks I should do some toradol and Kelley says she's driving me home. I smile and while I know she would be good company, I really want to be completely alone for that time. She tries to argue and says it's a long time alone but I promise to text her when I get home and she agrees that will be fine. Dr says, OR! You could go get a bottle of wine and hotel room and call the hubby! 

Ha. No. Thanks. I'll just go home. 

Kelley gives me the toradol, I wait about 30-45 minutes and then we pull the IV and I'm free to go. I have a second disc in hand with all of the images from the whole night.  I went home and proceeded to have an extremely restless, emotional, frantic at times night. I tried to work, kept getting kicked out and finally gave up and went to bed around 4 am. 

January 20, 2017

I am awakened at 6:30 by my alarm and am so uncomfortable and exhausted that I say screw it,  reposition myself, and fall back to sleep. 

Next thing I know, it's 9 am and my phone is blowing up. Jeremy and Amie both worried about me because I haven't text or shown up to work. Shit. Sorry. 

I make sure they know I'm ok and start to dial the urologists number. My phone starts to ring and it's them. They can see me this morning, at 11 or earlier if I want.  Nope, have to shower. 11 is fine. 

Jeremy meets me there, I'm late of course. I don't tell them it's because I went into melt down mode and really didn't want to go at all. We meet Dr Klingler, and both really like him. He showed me my images and yep... there's definitely something there. Anyway, it was reiterated that this type of mass is malignant in 90% of the cases it is found, leaving me with a 10% chance of it being benign and harmless. Not great odds.  The encouraging thing is that he states that he feels very confident that there's no evidence that it has affected any other part of my body. My chest X-ray looked clear and while there are a few lymph nodes in the immediate area that are enlarged, he feels that removing the kidney and those lymph nodes will be sufficient. Surgery is scheduled for January 30th. He said that he really wanted to get it done the 23rd, due to my symptoms, but the OR's were all booked. So, the 30th it is. Ten days. 

Once the kidney and lymph nodes are removed, they will be sent off to pathology and then we wait. We wait to hear if it is benign or malignant. If it is malignant, I will be referred to oncology and then a new plan will be determined. I will probably be fully examined and more tests and scans run.  I may need chemo, I may not. I may just need to be observed and tested every so often. Who knows. It's scary, but honestly, it's completely out of my hands at this point. I'm just praying that Drs Klingler and Heeb know what they're doing, that God's plan includes complete healing for me, and that my health insurance is at least enough to not bankrupt us. I could use some prayers, my friends. And so could my family.