Friday, August 11, 2017

Surgery Details



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 On July 14, 2017 I had surgery to remove a 1cm cancerous tumor from my right kidney. Because it was located on the lower pole (bottom part), 10% of my kidney was also removed to give it clear margins. Basically they took out some of the healthy part of my kidney along with the tumor to make sure they got all the cancer. 

The surgery was laparoscopic (6 small incisions vs. 1 large incision) and robotic assisted. There are a couple of super cool videos on YouTube that shows the robot cutting the skin off a grape and sewing it back on. We explained the surgery to the kids by telling them I had a tumor (which is something yucky growing in my body) that the doctors are removing so that it doesn't make me more sick. We showed them the video of the grape and I think they watched it a couple dozen times in the weeks leading up to my surgery. They thought it was so cool & it really is! Here is a link showing an animation of the type of surgery I had.

I had very strict surgery prep instructions. Since the surgery was to take place 3 hours away, I was instructed to travel the day before. I had to report to the hospital at 7:15 am. I had to fast after midnight. I had to take a shower the night before and wipe myself completely with these Chlorhexidine Gluconate surgery prep wipes that kill bacteria on skin and help protect against wound infection. I was wiped down 3 more times with these wipes at the hospital before surgery. I also was instructed to brush my teeth (again, brushed 3 more times at hospital. I mean, this was a no-brainer for me. I always brush my teeth, but I guess its not for some people). Since it was a surgery with a respirator involved, the brushing helps prevent bacteria spreading down your throat and thus protect against pneumonia. I also had to practice breathing with a ventilator like machine before (and after) surgery. I had to wake up  at 5:15 am to drink this sport Gatorade drink (YUCK!). I did all the prep and got to the hospital on time. We hardly slept the night before.

They took me right back to start prepping. They measured my height and weighed me. (I found out I'm 1 inch shorter than I always thought I was! So sad!)  I absolutely did not care for the nurse that was prepping me for surgery. He kept telling me how much he hated the city we just moved to and how I had way too many kids. I'm pretty sure its none of his business how many kids we have. I finally was able to see Jorge for about 15 minutes before they whisked me back to surgery. By then I was super anxious and seriously irritated.

Surgery went really well. Although the surgeon said it was a little more complicated than he had anticipated.  I had extensive scar tissue from a previous abdominal surgery. Because of that, he had to clear out a lot of the scar tissue and move my organs around to access my kidney. This made recovery particularly brutal the first few days. My organs were all bruised and sore and I had so much gas - like excruciatingly painful gas floating all around in my abdominal cavity. The only way it got better was to walk, but I could hardly walk. I was in so much pain. Not to mention the nursing issues I mentioned in my previous posts. I was stitched up on the inside and Dermabond was used to close the outside. I was only in the hospital overnight, but I did come home on some pretty heavy pain pills. 

That first week I was such a mess. I was heavily medicated and mostly slept - except for the mandatory walking. I couldn't handle anything or anyone touching me. I had a fever every night as my body slowly began to heal. At one point we thought there might be an infection and I had to go to the lab at the hospital for some tests. But there was no infection and time really does heal (at least physically). By day 10 I was no longer taking pain pills of any kind and I was able to sit up in a chair for a few hours at a time.  

For the most part since that first week, recovery has gone really well. My belly was pretty swollen for a long time. It took a while for my digestive system to figure itself out. Everytime I would eat something my stomach would start hurting and it felt like all the food was getting stuck near those top incisions.


My belly the day after surgery. The long diagonal scar is from my previous surgery.

Today is 4 weeks from surgery.  Today is also the first day I've worn anything beyond a baggy t-shirt and yoga pants. The Dermabond has finally worn off. I'm still so tired at the end of the day. But every day I feel stronger. I'm still not allowed to lift anything until my follow up appointment next week, which is pretty difficult having an almost 11 month old baby and a toddler, but we've had a lot of help in the form of friends and family.

I'm grateful for the support that has been shown to my family over the past few months. I am also so thankful for medical advances that made this kind of minimally invasive surgery possible for me and countless others. Although recovery from any surgery can be rough, it could have been worse had I needed an open nephrectomy where they cut from back to belly. I'm grateful for the random way the cancer was found and I'm grateful it was found early while the tumor was still really small. Even though I still have many years of surveillance ahead of me, as of right now I am considered "no evidence of disease" and that's the best place to be. 

Friday, August 4, 2017

Normal Genetics & Trying to Survive

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I did some genetic testing since this is such a rare diagnosis for my gender and my age. My Dr encouraged me to do it as it might change my follow-up care. And so I found out yesterday that my genetic tests were all normal. It's great news, but at the same time, it just doesn't make me feel much better. We have this running joke that if anyone is going to get the less than 1% things in life it will be me and once again it has. I have once again gotten something so extremely rare. Not only a rare type of cancer, but I am the wrong everything for this type of cancer. And I'm just weary. I'm tired physically and emotionally.

I should be able to take comfort in the fact that they got all of the tumor. But this type of cancer doesn't behave like other cancers and that worries me. It's resistant to chemotherapy so now we just wait and keep watch and cross our finger that it won't come back.

I've joined a couple of facebook support groups and from what they have told me, this cancer is never considered cured. In other cancers if it's been in remission for 5 years it's considered cured. But not this one. It's considered "no evidence of disease" because this cancer has come back up to 20 years after its been in remission. That is terrifying!

I wish I had something insightful to say. Like I've learned so much in these couple of weeks I've known I have cancer, but I'm still processing. I'm still in shock. I'm recovering from surgery in a new city where I don't know very many people. I'm still exhausted and trying to normalize life for my kids  while still in temporary housing. We did finally find a house and will close escrow at the end of August. But in the meantime our lives are still upside down.

And I'm still just trying to survive.

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.

Cancer.


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

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 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.


Monday, March 13, 2017

Lydia's 4th Angel Birthday

4 years ago today I did one of the hardest things I have or probably will ever have to do in my lifetime. I gave birth to our sweet little stillborn baby girl Lydia. Even though she didn't live a day outside my body, she has given our lives direction of eternal significance.  Tonight as we celebrate her angel birthday, we will also be celebrating an eternal truth - families can be together forever. We are so grateful for a merciful God whose plan makes all the yucky stuff easier to bear. Happy 4 years baby girl. We love you forever.