Luck.

Yesterday while I was in a meeting at work, a local 614 number called me and left a voicemail.  Out of curiosity, I searched the Google for the phone number and saw that it was Riverside Interventional Radiology.  Once I was out of my meeting, I was able to check my voicemail and found that I needed to call back.  Searching my brain ... I realized that it is almost March and that April 2nd will be the one year anniversary that I had my tumor ablated by Dr. Lee. 

I called back on my lunch break, only to find that his nurse was not at her phone so I left a message. I assume that she wants to schedule my one year follow up.  One year where so much as changed. One year of knowing that I had something terrible inside me and just by chance, someone found that something terrible and burnt it the fuck up before it could move into my lungs or my brain. 

I still have my hair, and I still have my kidneys, and I am still fat and happy.

 Luck. (?)

This morning I awoke to terrible news on my Facebook feed that a dear friend now knows that this disease is inside of her.  And most likely she will have to endure the miserable treatments to save herself.  I hate it.  I hate the dread and uncertainty that anyone who has dealt with this disease feels.

I hate that I feel guilty about being so lucky.  I hate that within the span of a week one local family laid their 13 year old to rest due to this disease, while another faced the terrible truth that their young boy, who hasn't even had his first day in Kindergarten yet, has relapsed and will again have to fight Neuroblastoma.

I say all of this to say: be thankful.  Be aware of your body.  Don't let some doctor blow you off if you don't feel right.  Savor the simple, silly moments in your life. Do what brings you pleasure. 

Scarlet letter

So back to the last time I saw my kidney doctor (yes, I realize that was in December, and it is now February ... so what?)

So, I have a bunch of little stones that should pass on their own.  Good that they are small, bad because they still have to pass, which hurts no matter how small they are.

I had asked the kidney doctor for a refill of Percoset, so that when I had pain from passing said kidney stones I would not have to go to the ER and pay a $150 copay and most likely be exposed to unnecessary CT Scan radiation.  

This is what he tells me:  "I was going to write a refill for you but I see that you had a prescription written in October for Percoset from another doctor.  The OARRS system would not let me write you a prescription, and I won't be able to for 6 months now".

And then it hit me ... Dr. Brad (my family doctor) had written me a script for 15 (15!) 5mg Percosets, because I was not due to see the kidney guy until the end of the year.  I still had some left, and so I brought the bottle out of my purse and explained that my family doctor had given me a script for rescue pain relief until I saw him.  That he had written it for only 15 pills and I still had many left.

Kidney doctor was not impressed that I had evidence of me not being a drug addict and/or dealer.  He again stated that it had flagged me and he would not be able to write a prescription for 6 months.  At this point I started to lose my shit, because I saw that this was going to end poorly.  

So, I asked him, if I ask my family doctor for a script in a couple months because I am out and you can't write one for 6 months ... does that mean that you can't write it for 6 months from the original date in October or I start a new 6 month cycle?

Here's the thing:  I have never asked for pain meds early, or asked for pain meds when I did not have a current  x-ray/CT scan without plain evidence of stones.  I have the utmost respect for opiate painkillers and their addictive properties.  I don't abuse them because I know that I will be in pain, and I want for them to work.  

But apparently I now have a scarlet letter attached to my name in the eyes of the State of Ohio.

Mad World

So I saw the kidney guy yesterday.  My blood pressure was like a gazillion over a gazillion and even though I told the nurse that my blood pressure is always high when I come to the kidney doctor, and I think it is a mix of nerves and them taking my blood pressure with a tiny ass cuff around my wrist - she didn't try to take it again on my upper arm.  I mean, I know I am big, but they do make cuffs for big people.

The nurse asked if I needed refills and I said yes, I did need refills for my Enablex and for Percoset. The kidney guy gave me 20 Percoset in March (right before I had my cancerous tumor burnt out of my kidney).

Finally the kidney guy comes in and he asks how I am feeling.  I tell him that I am feeling several different kind of ways.  That I have pretty fairly recurrent pain on my left flank, that my bladder symptoms are really aggravated by stress, and that I have had a lot of stress lately.  

Blinking back tears (because that is apparently what I do when I see the kidney guy), I told him that I have had 3 different jobs this year.  That the day he told me I had probably-cancer, I went to my place of employment and was informed I would need to reapply for my job with another employer.  I had definitely-cancer and that sucked and that the stress made my bladder symptoms worse.  

And before I could stop myself the words "and my german shepherd died in the back seat of my car in the middle of the night on the way to the emergency vet"came spewing from my mouth.

And he said "you're starting to sound like a country song, Amy".

Which, I maybe was, but fuck him for saying that.  That has been my life in 2014.  

So the good news is I didn't punch him in the face, and I don't have any cancer growing in my kidneys.  

Bad news is that I have 6 small stones in my left kidney and 1 large stone in my right.  And the medicine that I could benefit from taking to prevent stones may cause more irritation to my bladder. And so why don't you do another 24 hour urine collection, because you haven't done one for two years.  

I'll save my Doctor Shopping story for next time.

Everything's just wonderful

Going to see the kidney doctor today for my post-tumor 6 month follow up (well, more like 8 -9 month follow up due to me cancelling my appointment in October and not being able to get back in till now).  

I know that things are fine post ablation (cancer wise).  My CT scan in October showed no signs of recurrence.  But it did show stones (7 mm being the largest) and the radiologist is worried about scar tissue from the procedure.  

I also have this little worry in the back of my head that I my kidney function has declined the last few times I have had blood work done .... not enough to really be worried ... but enough for me to be worried.  Enough for the radiologists to lessen the amount of CT contrast they give me. 

Then there is the worry that I will go in to the office today and I will have to beg for pain medicine.  Because even though the guy is really good at finding cancerous tumors he is really bad at patient relationships and is afraid that giving someone with known kidney stones a few Percosets so that they don't have to go to the ER every time they pass one is aiding a dangerous drug addiction that will cause him to lose his medical license. (hello, run on sentence).  

It is demeaning and unnecessary and the reason I cancelled my appointment in October.  I literally could not stand the thought of going through the motions of this again with him.  So I left work like I was going to go to the appointment and instead drove right past the doctors office and went home and got in the bed and napped instead.  

My anxiety is at an all time high.  I worry about going anywhere because I am afraid I will have a kidney stone attack.  I am afraid that the sky is going to fall.  I am afraid.  

Pain is traumatic.  Cancer is traumatic.  This year has been traumatic.  I am ready to not be afraid.

Something Is Not Right With Me

In a few minutes, I will be done with work for the week.  

My first Parent Teacher Conference as a High School Educator in the books.  No tears were shed.  On either side of the table. 

I will pack up my laptop and head to the Giant Eagle store and hope that it is not insane with Thanksgiving shoppers.

I will head home, and even though my first thought will be to get into bed in my dark bedroom, I will take Sophie on a walk.

Then, I will probably get in my bed in my dark bedroom with Sophie and Klaus.  I will probably read for a while, and then take a nap. I won't nap on my left side, because it hurts my kidney for some reason.

I'll be by myself this evening.  Which is ok.  My thoughts have been loud and angry and sad.  I will find some mindless TV to watch and hopefully drown it out.  I might be able to stay awake until Joe gets home.

I feel like the year that you beat Cancer, you should be celebrating and happy and grateful.  I feel guilty that instead I feel alone and anxious and tired.

I should feel better than this.  

I just don't.

what is a survivor?

So it has been 7 months since I had a cancerous tumor incinerated in my left kidney.  I knew 6 months prior to that there was something there that wasn't supposed to be there.  And for the most part, I have been fine.  I had a 3 month follow up MRI in late July and everything looked great.

Then in late August I was laying in bed with the husband and the brown dog and it hurt.  It hurt me to lay on my left side (my favorite sleeping side).  When I rolled over onto my back, it stopped hurting. So I thought, I am sure something is just healing and it will go away.  So I waited.  And it wasn't hurting except for when I was in bed on my side.

I called my doctor and left a message.  He called me back that night and said it most likely was scar tissue forming, and that when I laid in that position, it put directional pressure on it.  Or it could be that the ureter was damaged during the RFA and I had hydronephrosis which is kind of serious.  He suggested I get a CT scan.

I know I have an appointment with the urologist in November and have an ultrasound already scheduled to have done before I see him, so I ask if it is ok if I wait.  CT scans are expensive and expose your body to a very large amount of radiation.  He says okay, but call me if it gets worse.

Then I notice that when I get in my car, the pressure of the seat back (it kind of juts out to cradle your back) hurts my side.  And then I notice that when I lay on my Right side, my left side hurts.  Gravity is being a bitch.  And then I think.  I think lots of thoughts and many not so good.  I call the doctor and leave a message.  The next day his nurse calls and says we will set up a CT scan for you.

So Friday evening, in two days, I will be having a CT scan with contrast (boo!) at Riverside.  Probably won't get results until Monday.

In other news, I have been pondering making a purchase from Stand Up to Cancer.  They are a good organization that actually uses donations for research.  They have shirts that say "Survivor" on them and I have had my eye on one.

But I couldn't bring myself to buy it because I felt like I would be an attention whore if I did.  Like I was bragging that I had cancer.  I posted my thoughts in a group of Renal Cell Carcinoma patients to get their opinion.  One persons reply really stuck a chord with me:

"2 weeks ago my father was diagnosed with stage 4 esophageal cancer. His cancer is more advanced than mine, he's doing chemo, I had my kidney removed. Our cancer is different BUT still cancer. We still know what it's like to hear the diagnoses, tell your loved ones and fear death. What I've learned is more than anything he wants a survivor shirt too. So wear your shirt proudly for all of the people haven't beat it...At least not yet."

A dose of perspective that was badly needed.  So I ordered the shirt, and I am going to wear it and answer people's questions.  I am going to tell them that young people DO get cancer, and most renal cell cancer patients do not know they have cancer until it has taken over the kidney and spread to their lymph nodes and their lungs.

I am going to tell them that they need to be smart about where they donate their money to.  That just because a product has a pink ribbon on it, it doesn't at all mean the money will be spent for research, prevention, or treatment.

And I will work on my internal thoughts on mortality and sickness.  Of enjoying life because it is pretty cool for the most part.  I will wear my shirt and be an advocate and get over myself.

4 years since I blogged. Thanks, cancer.

An introduction: 

 Hi, I am Amy. 

I am a 33 year old clear cell renal carcinoma cancer survivor. I am incredibly lucky. I have a host of different health issues, most urinary tract/kidney related. I have been a chronic kidney stone maker since middle school. I have had countless surgeries, nephrostomy tubes, lithotripsies, done to get rid of stones. Mostly in my left kidney. 

Last October, I was having pretty funky pain on my left side.

 A few months prior, I had a CT scan done in the ER for kidney stones. Nothing out of the ordinary showed up. My urologist decided to have a CT scan with contrast done. A few days after, he tells me there is a small mass in the left kidney. May be harmless, may be cancer. We will wait 6 months and repeat the CT with contrast. 

In March of this year, I go back to the same CT machine and have more contrast flushed through me. The next night, I get a phone call from the urologist. It has gotten bigger, and is being fed by lots of blood vessels. The mass is "probably" cancer. At the office the next day he tells me it is 1.5 cm and is a great candidate for Radio Frequency Ablation.  He tells me there are two doctors in Columbus, Ohio who perform RFA and I want to go to the one with the most experience. Enter my dream doctor: Dr. Jonathan Lee, MD .   I'm like, wait a minute ... this guy looks like he is fresh out of High School. The uro says, if you were my wife or daughter, he is who would do the surgery. 

 So we meet with Dr. Lee. I schedule for the soonest available appointment, April 2nd, 2014 (my 9th wedding anniversary).  RFA is an outpatient procedure. They start an IV, give you some sleepy juice, put you in a CT scanner and insert a “cooking needle” (yes, that made me cringe too) into the kidney tumor through the back. The CT guides the radiologist to the tumor where he takes a biopsy and then destroys the tumor and surrounding tissue with heat. 

 I wake up and my bladder is fucking killing me (thank you, interstitial cystitis). My back and side is sore. But I still have a left kidney. Dr. Lee feels super confident that he was able to get clean margins, without sacrificing too much kidney tissue. I go home with my husband and take ALL THE PILLS. Pain pills, anti-nausea pills, bladder pills. 

 Two days later, the dream doctor calls and tells me “you had cancer”. Which is a very strange thing to tell someone, I suppose. Stage 1 Renal Cell Carcinoma, Clear Cell Grade 2. But, margins are good and I will see him in 3 months for another scan. The next day, I pass some tissue looking stuff in my pee and the urologist wants me to come in and look in my bladder with a camera to make sure there aren’t any tumors in there. 

Awesome. 

So that happens, and everything looks good (as good as a bladder with IC could look). And then the uro mentions the spots on your lungs that showed up on the CT scans. So lets get a chest x ray. 

Awesome. 

 So that happens, and apparently they aren’t anything to be worried about (haha). Normal calcifications. We’ll keep an eye on them. In August, I have an MRI with contrast. Everything looks good. We might use pictures of your ablation in textbooks, Dr. Dreamy says. Also, if you ever have another kidney attack and they do imaging, you are probably going to have to have them look up the procedure you had done, because hardly anyone knows about it. And they might think the “charcoal” is actually a tumor. Anywho, you are doing fine. I’ll see you in April for another scan. 

 I go back to work a week later, starting a brand new job. I feel like I have a really weird secret. I feel like it really didn’t happen. I didn’t lose my kidney. I didn’t get chemo. I have all my hair. I feel like I am not a "legit" cancer survivor.  

People with cancer are much sicker than I was.  

I was lucky. Lucky to have kidney stones.  Lucky to have a doctor who fought my insurance company to have the CT contrast used, which showed my tumor.  Lucky it was contained in my kidney, a 1.5 cm mass of cells who were on a mission to kill me. Lucky to be able to have a procedure done that spared my kidney.

I guess luck is all relative.  

We will be victorious

There are two things that you should know ...

1. The people who live around us really enjoy setting off fireworks. And not just on holidays. Any period of darkness will suffice. I believe this to be a phenomenon of living close to Pickaway County.

2. I have a German Shepherd who teeters on the edge of needing medication for anxiety.

Thunderstorms, loud vehicles, the voice from the ice cream truck, all are suspects in Lola's world of Somethingisgoingtogetme.

So imagine my delight when I took the dogs outside this evening, only to realize that it was lightning AND someone felt the need to celebrate with firecrackers.

Lola, being the reasonable being that she is, did a quick survey of the scene and fled to the step leading to the back door.

I, being the calm and assertive pack leader that I am, sat down on the patio and told her to go potty.

After repeating the command 43 times, Lola takes one step off the patio and does what I've asked her to do. She was so close to the patio, she might as well have peed on the concrete.

But, she did go and that is a big change from years before in which there would be outright refusal and end up with me pulling her on a leash in the back yard because she hasn't gone potty in 72 hours.

A small victory, yes?

Thursday Evening

Outside my window... the sun is setting on a warm, sunny day

I am thinking... about the folks that I serve everyday, about the need for supplemental insurance, and that I am kind of over CNN.

I am thankful for... my husband, my dogs, and Coke Zero

I am wearing... a Fender t shirt, jean capris, flip flops

I am remembering... that my drivers license is expired and I need to go to the BMV

I am going... to see Wicked in August and Muse in October

I am reading... nothing right now and it totally sucks. I finished the Sookie Stackhouse novels and I have no books left to read. A trip to Barnes and Noble is in my future.

I am hoping... that my sinuses are better tomorrow

I am creating... a display for the sleeping area in my classroom

From the kitchen... an ice cold Coke Zero

Around the house... sleepy dogs on the floor, my shoes in a pile

Some of my favorite things... True Blood, my wedding ring, Glee, the pool being almost ready for Klaus to swim

A few plans for the rest of the week... finish my work week, get my new drivers license, take my shoes to UPS, nap with the 4 leggeds

A photo to share... post bath hysteria

Her name was Lola, she was a show dog

From the AKC German Shepherd Dog breed standard:

The breed has a distinct personality marked by direct and fearless, but not hostile, expression, self-confidence and a certain aloofness that does not lend itself to immediate and indiscriminate friendships. The dog must be approachable, quietly standing its ground and showing confidence and willingness to meet overtures without itself making them. It is poised, but when the occasion demands, eager and alert; both fit and willing to serve in its capacity as companion, watchdog, blind leader, herding dog, or guardian, whichever the circumstances may demand. The dog must not be timid, shrinking behind its master or handler; it should not be nervous, looking about or upward with anxious expression or showing nervous reactions, such as tucking of tail, to strange sounds or sights.

From my backyard, 30 minutes ago:

Random Car Alarm goes off
German Shepherd runs to the back porch and sets on the step closest to the door.
Followed by a very low, very quiet growl.