Finding Healing

This is a post that I wrote on July 4th, 2014:

“A few months back, I went to the doctor because I was experiencing extreme cramps that the doctor thought may have been ovarian cysts, or a bladder/kidney infection.  The doctor sent me to get scans of my ovaries, kidneys, and bladder.  They found a cyst on my kidney (completely unrelated to the original pain).  My surgeon said he wanted to get a CT scan of it to get a better idea of what he was dealing with.  He told us then that it was a complex cyst, but that he didn’t think it would ever be a problem and we could just monitor it.  He also said there was a 99% chance that it was NOT cancerous.  I didn’t like that answer so I told him to take it out. They had wrapped up the surgery and gotten results back that the cyst was indeed cancerous and so they had to put the Davinci back into me to remove my whole kidney since they had only taken out the “infected” part before.  After a week of waiting for more results, the surgeon told me to “go live my life” and he’d see me in 6 months for another scan just to make sure I was clear.  Again, I didn’t like that answer, so we decided to get a second opinion.  We consulted with my current pediatrician oncologist and she didn’t necessarily tell us what we wanted to hear.  She said that in reading the reports they found that liquid from the cyst had leaked into my stomach, therefore there’s a high chance that those cancer cells are currently living in the lymph nodes of my stomach.  And in a CT scan of my lungs she found that there is a node, which may or may not be cancerous.  There’s no way to test the lymph nodes in my stomach, so they have to do treatment.  During treatment they will monitor the node on my lung and see if it decreases at all (indicating that it is cancerous), or grows, or doesn’t change and they will decide if they need to do anything about that later on.  So for now, we wait and we pray that the treatment works, with minimum side effects, and that it doesn’t worsen. “

Present Day: I was only 16 when I initially went to the doctor for this issue and I was 17 when I found out that I had renal cell carcinoma, which was described to me as typically an old man cancer. It was a terrifying experience from start to finish. Not to mention it left me with medical PTSD/health anxiety that will most likely exist for my lifetime. Anybody that has personally dealt with cancer or has loved someone who has gone through cancer would most likely understand. What I didn’t know at the time was that the journey I went through then would help 11 years later when we found out that Randall (my husband) had cancer.

What I left out of that post that I wrote back in 2014 were the real details of my experience with the surgeon that I unfortunately had. He was the epitome of the stereotypical surgeon: cocky (not confident) with horrible bed side manner.  He did not bother to run tests before surgery to verify if the cyst was cancerous before cutting it open because he just knew there was a 99.9% chance that it wasn’t. Which either means that I am the .01% or this man didn’t have very good math…maybe a bit of both.  After surgery he instructed my parents to “withhold the truth” until I had a few days to recover because he was worried it would “inhibit my recovery.”  I’m no professional but I’d argue thats pretty unethical and honestly just stupid.

Needless to say, I found out that I had cancer by going through my mom’s text messages to family.  I could tell pretty much immediately out of surgery something was wrong and the fact that nobody was saying anything drove me insane.  I was pretty mad, and confused and those feelings only got worse when we learned exactly what the surgeon did during surgery. Since he already knew it wasn’t cancer, he ruptured the cyst in my abdomen, allowing some of the fluid to inevitably leak into my stomach. He had only taken a portion of my kidney and then sewed me up, just to get the flash freeze biopsy back saying that it was cancer. He had to reopen my stomach and take out the remainder of my kidney. This all wouldn’t have been a problem if the surgeon was right about it not being cancer, but unfortunately he was very wrong, so he effectively leaked cancer cells into my abdomen. But, it gets worse.

After all of that he advised me that I was just fine, and to go live my life. To this day I still remember sitting in a chair in his office thinking he had to be joking. Maybe in part due to the nature of my anxious personality. But it doesn’t take a rocket scientist to figure out that cancer cells being let out into your abdominal cavity followed by no treatment to attack them seems like a pretty horrible idea and a great way to let cancer spread. Fortunately I was able to get a second opinion from a pediatric oncologist at Upstate who had much more sense in her. They told us that it wasn’t black and white in terms of the treatment plan, but they could tell us that treatment was absolutely needed.

Thus began the real cancer journey. It is all a blur to me now. I can only imagine how my parents felt now that I’ve experienced it from their side of things. I had many different doctor’s appointments, CT scans, MRIs, PET scans, X-rays, blood draws, the works. They initially classified it as stage 3 due to lymph node involvement. One of the tests they did showed what looked like a node on my lung that they were unsure about. They explained that it could just be normal scar tissue. After going through treatment the last X-ray did not show the node anymore so on paper they considered it stage 4 metastatic cancer (assuming it was cancer that responded to treatment). I recently spoke with a survivorship doctor who said to this day she’s not convinced that the node on my lung was ever cancer, but either way I’m here today cancer free.

Back to my treatment. They decided they would be using IL-2 (interleukin 2) which is essentially a type of immunotherapy. The plan was to do one week inpatient, then one week off, then another week on, and a month off- for a few cycles. The first time I went to get admitted, I was adamant that I wanted to stay by myself that night, and told my parents to go home. I felt that I could do it by myself, and wanted them to actually be able to sleep. I quickly regret my decision a few hours after treatment started. It was late at night and I was starting to feel a lot worse than I imagine would have been possible that quickly. It felt like a really awful flu. I remember texting my best friend telling her that I was scared and didn’t want to be alone but I couldn’t bring myself to text my mom and tell her.

I remember the relief I felt the next morning when my mom got up to the hospital, and I didn’t spend another night alone after that. My treatment caused a slew of less than ideal side effects, full blown mouth sores, nausea, vomiting, headaches, body aches, etc. So many people showed up for our family through visits, calls, texts, and more. We had a tremendous amount of support that I am still extremely thankful for to this day. Friends came and played cards, child life specialists came in (attempting) to entertain me. So many prayers were prayed.

One of the best nurses named Brian used to bring happy meals in for the kids in the hospital. There is actually a page on facebook now called Brian’s Kids and a website brianskidscny.org. He has started an amazing movement to help kids and their families that are going through cancer.

One of the doctors that I ended up having was the brother to one of my brother’s best friends at the time. He used to bring in puzzle balls for me to try and keep my mind busy. Those are two of the many individuals that I have strong, fond memories of.

The second week of treatment my body started failing. My mom has described the moment they brought a “swat” team in to move me to the ICU when suddenly all of my vitals came back to normal in a way that only God could have handled. At this point though, the risks far outweighed the benefits so that would be the end of my treatment and we would then go into close and lengthy monitoring.

We took a trip to Boston to see a specialist there.  Every doctor I saw was extremely intrigued by my case to the point where I felt almost like a guinea pig.  I consented to being part of their research studies in case anything I experienced could end up helping someone else some day. By the end of that appointment we were told that they were comfortable with the treatment I had so far and agreed that close monitoring would suffice moving forward.

It started out with scans every 3 months, then every 6 months, then once a year until I “graduated” out of scans.  I will never forget the anxiety that each scan brought.  Were they going to tell me the cancer had come back? I knew that if they called to tell me results over the phone it was okay and if they said I needed to come in for an appointment I would know it wasn’t good.

Praise the Lord, I never recieved a bad phone call.  The entire experience has left me scarred in more ways than one. Physically from surgery, but emotionally and mentally surrounding anything health related.  I have since watched people I love go through cancer journeys that I wouldn’t wish on anybody. But I would go through it all again if it could mean sparring them from going through it.