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.