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.