Friday, July 28, 2017

The Cancer Backstory

A few months after Rhydian was born I went to see my Dr. because I was so exhausted. Like over the top exhaustion that I have never experienced. Yes, I had just given birth, but I never felt like I did after the other babies. What I had was bone-weary exhaustion. I thought maybe I was anemic or my thyroid was off. My Dr did some blood work and it all turned out to be normal. So we thought maybe it was postpartum depression. I've only ever experienced it in connection with Lydia's loss (in which grief played a huge role) and it didn't feel like that. I didn't feel depressed, but we both thought it was worth navigating at least, so I went to see a psychologist. She didn't think it was PPD. She thought it was just lack of sleep and pushing myself too hard too soon. So I basically quit doing everything except the essentials and I got the baby sleeping through the night (mostly). I didn't feel much better. I was just trying to survive.

Fast forward a few months and we found out Jorge was getting relocated for work. We were excited and nervous. He was scheduled to start a few weeks before the kiddos got out of school so we planned to have him go ahead and I would stay behind with the kids. We made all the arrangements with the movers, etc. A couple of weeks before he left I had this crazy stomach ache and my Dr thought it might be a gallbladder infection and sent me to the ER. The ER did an ultrasound and discovered my gallbladder was fine, but my right kidney was enlarged. They thought it was likely a harmless anomaly, so they discharged me and told me if I didn't feel better in a few days to follow up with my Dr. But the stomach pain did go away. So I thought it was just a virus of some sort and I didn't call my Dr. It's not until Jorge asked a few weeks later if I followed up with my Dr that I even gave a second thought to my kidney. So I emailed my Dr & he agreed it was probably harmless but offered to either wait it out a few months or have another more specific ultrasound. I reluctantly decided to get the ultrasound just in case.

It took about 3 weeks to get in for the ultrasound and by that point Jorge had already started his new position in a city 3 hours away from us. It was the end of the school year. Any parent knows that means it's insanity! I'm trying to still do all the end of school year stuff and swim team carpool and organize things for the packers/movers and find a place to live in our new location... I have 4 kiddos (8 mo to 9 yrs) to take care of and my husband isn't around. Life was super stressful! And I was still absolutely exhausted and overwhelmed.

About 10 days before we were scheduled to move, I was able to finally get in for the ultrasound. Although the tech spent a super long time on my right side, she never said anything and I didn't hear from my Dr for almost a week. I assumed no news was good news and went on about my crazy days.

I was sooooo wrong.

I got an email about a week later followed up with a phone call. The Dr told me I had a mass on my right kidney. It looked small and was likely a harmless cyst but they needed to do a contrast CT scan to be sure. I asked if it could wait until we get settled in our new location?  Because, you see, we are literally moving the next week! My answer was an unequivocal no. I was trying not to freak out, but I totally was!!! I had my CT scan done on Monday. The movers came Tuesday and Wednesday. My kiddos last day of school was Thursday. The last swim meet was Saturday morning and we officially left by 4 pm Saturday. It was insane.

Sometime in there (maybe Thursday?) I got a call with the CT results and it was not good. I had an enhancing 1cm solid mass on the lower pole of my right kidney. Dr Google confirmed my worst fears...  90% of the time that means cancer. But my Dr reminded me not to believe everything Dr Google tells me. Since he is not a specialist he didn't exactly know what it all meant for me, so he sent a referral to a Urologist in our new location and by the next Wednesday (4 days after arriving)  Jorge and I were sitting in the office being told there is indeed a 90% chance I have cancer. They decided  to perform a robotic assisted partial nephrectomy to remove the tumor and part of my kidney. But now I had to wait for a consult with a surgeon because they don't actually do this type of surgery where we now live. I had to drive 3 hours back north to the area we just moved from!

So about a week later we met with the surgeon and he had a different opinion. He thought there was only a 60% chance it was cancer and a 40% chance was something called a fat poor angiomiolypoma. We scheduled surgery for 2 weeks out - July 14, 2017.

In the meantime we were trying to buy a house. We put in 4 offers and get denied 4 times. We were living in temporary housing and only had 60 days to find someplace to live. Time was running out.

I also was now trying to wean my baby so I could have surgery and it was going miserably! Before anyone questions why I was trying to wean, let me explain that there was indeed a huge likelihood that I had cancer. We didn't know the extent of it or if there was going to be any additional treatment beyond surgery. Also, I was going to be away from the baby for several days and he was already 10 months old and readily eating solid foods. I was trying to wean him before surgery because it was the best option we could come up with. It was a decision I made in conjunction with his pediatrician. It wasn't an easy decision and definitely not one that I wish for anyone to ever have to make.

That aside, I found myself standing in Target late one night in the formula aisle in tears. I have breastfed all of my babies and so I had no idea what kind of formula to buy or what kind of sippy cup he'd take - if he would even take one since he had never taken a bottle. I started to feel super self conscious.  People start staring at me and I feel like they are judging me. In all likelihood they are wondering why I am sobbing in the formula aisle in the middle of Target. But I just couldn't bring myself to do it.  So I left feeling defeated and frustrated and embarrassed.

And once I finally was able to get up the courage to go back and buy that formula and those sippy cups, my now 10 month old baby refused to take it from me! He ONLY wanted to nurse. And he was now waking up 4-5 times a night in order to do so. *sigh* So I decided I was just not going to wean him and we'd just deal with the consequences if they came. But a few days before my surgery he took a sippy cup of formula from my husband! And then another one from my mother-in-law! And now I have hope at least he'll be ok while we are apart and maybe I don't have cancer and we won't actually have to wean at all.

Surgery day comes and goes. When we got to the hospital, the pre-surgery nurse found out we just moved and kept going on & on about how place the place we have now moved to is the worst place he's ever been to. He also kept telling me how 4 children is too many and kept telling me why it was a bad decision to have so many (pretty sure it's none of his business!). They finally let me see Jorge and took me back to surgery a mere 15 minutes later. I was terrified and riled up and so tired still.

The first week of recovery was super rough. I was in so much pain for multiple reasons. I had planned to pump and dump while I was away from the baby, but I was never able to get a let-down because of the pain. So by the time I am reunited with him I am so engorged I felt like I was nursing a newborn again! I was in so much pain from my surgery and so much pain from nursing as well. And of course by then it had been about 4 days and he had discovered the magic of fast-flow sippy cups. I tried to get him to nurse a few times and he was so impatient. We were never able to restore the nursing relationship and sadly my milk dried up.

It took about 5 days for the pathology report to come back and it confirmed all of our worst fears and what I already knew in my heart.


Clear Cell Renal Cell Carcinoma to be exact.

More info to come soon. I'm still sooo tired. Apparently cutting out my tumor wasn't the cure for the exhaustion I hoped it would be. Now I'm recovering from surgery!

Friday, July 21, 2017

Sometimes Life Just Stinks

photo credit

 A few years ago after we lost Lydia, I committed to living a more fully transparent life. But this is just so hard to write. I've started it a million times in my head and it doesn't get any easier. So I'm just going to come out and say it. It's completely unexpected. It's shocking. It sucks.

I have cancer.

I'm a 34-year-old women in good shape who has never smoke or drank in my life. I have a cancer that is predominently diagnosed in middle aged men who smoke, drink and are obese. I have a cancer that accounts for less than 2% of all cancers. Sure the margins were clear so they got the whole tumor.  But this kind of cancer is known for coming back with a vengeance. This kind of cancer is hard to treat if it metasticizes. It's chemotherapy resistant.

And I am left not knowing exactly what to think or feel right now. 

Sometimes life just stinks.