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.