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.