If you would have told me five years ago that I would be sitting typing my journey with cancer, I would have laughed at you. I would have said "No, I'm fine. I'm healthy." But life has a way of surprising us like that, right? The following is my story. I will warn you that there are some gross pictures of my tumor. But I want to be transparent and honest.
On July 28, I woke up with a head cold and noticed a small marble right above my right collar bone. I am not usually quick to go to the doctor, but I went. My ARNP said it could be fluid trapped in the lymph node from my head cold but there is always the thought of breast cancer in females my age. For a minute my mind was blown that she even dare brought up the "c word" because of an infected lymph node. She gave me a prescription and said come back if it doesn't get smaller. It didn't. A month and a half later I was back and it had doubled in size. She ordered a mammogram and an ultrasound of the lymph node. I was starting to get worried at this point. But in typical Susan fashion, I kept it in. When Michael would ask if we should be scared or worried, I'd say "No, it's just an infected lymph node." At this point, the lump was still growing and painful. I had the mammogram -- no breast cancer. Whew. Poor ultrasound tech, I couldn't stop the tears for a few minutes. The ultrasound of the lump did not reveal anything other than there were more lumps inside and their sizes. I think there was a total of 7 lesions that they could measure.
Since there were no answers with those tests, she referred me to a general surgeon for a biopsy. On October 9, the biopsy happened. Not too bad. I didn't have much pain. I had planned to be off work for two weeks. I joked with my coworker that I really wanted to take three weeks but didn't want to take advantage and said I would be back in two weeks. Two days later, our lives were flipped upside down. The doctor called from his cell phone at 9:00 on October 11th. "I am so sorry to tell you this on the phone, but it's cancer. We can not figure out where it is coming from. It's metastatic cancer. And we want to get on top of this." My pathology report had come back as "unknown." I had a CT scan on my neck and chest that afternoon. And on to the oncologist the following Wednesday. It was all happening so quickly. But yet it felt like time was dragging by. Local oncologist Dr. Chua said, as soon as he walked in, "I have a plan A and a plan B." We were looking at a diagnosis of "Cancer of Unknown Primary." He orders a PET scan which showed the cancer was only in the right lymph region. He referred me to an ENT with the thought process that cancer starting somewhere in the head area. I saw the ENT the following Wednesday and on Friday I was in the operating room for surgery. Dr. Jones was performing a triple endoscopy to take biopsies from areas that cancer can hide in nasal passages. Did you know that cancer will hide??? I sure didn't. He took my tonsils out, resected the base of my tongue, and took 3 other biopsies. And, side note, the base of the tongue is not where I thought it was. Talk about a miserable two weeks. Being an adult and having tonsils out is no fun. The results... no cancer found.
Next step, referral to Vanderbilt to the Head/Neck Cancer Group with the fabulous Dr. Jill Gilbert. She begins by ordering more tests and wants me to start chemo in two weeks. The tumor was sent off to Tempus in Chicago, IL for DNA analysis. This is an amazing company! Over the course of the next few weeks, I have more scans and tests than I have ever had in my life:
- bilateral breast ultrasounds
- ultrasound uterus and ovaries
- PAP smear
- Another CT scan of chest and neck
- CT scan of abdomen
- Needle Biopsy
All the while, the tumor continues to grow. By the time I started chemo the week of Thanksgiving, it had more than tripled in size. Dr. Gilbert had ordered a cocktail of Cisplantin and Taxotere. Meet "Tater" the tumor. We called it "Tater." Yep, we named the tumor. It was ugly and red. But we laughed anytime we said "Tater" and we were always trying to find humor.
On November 25, 2019, I had my first chemo infusion. We got there at 8:00 to start blood work. My cocktail took about 8 hours to infuse it and all the pre-meds. Michael and I settled in and entertained ourselves. The first day after chemo was not that bad. I was a little tired. Day 2 - a little bit more tired. Day 3 - Side effects really kicking in. I experienced a lot of fatigue. This is not just a tired feeling. It's the most fatigue I have ever felt in my life and hard to explain. It is almost painful to move. You seem to have no energy to eat or drink. My family tried everything to get me to eat and drink. They got baby food, Gatorade, Pedialyte, Popsicles. I was able to hang out with family for about 2 hours on Thanksgiving. By that Saturday night, Tater was red and starting to drain. We notified the surgeon and ARNP because we knew it was infected. The surgeon was out of town and ARNP said "Time to go to Vandy."
Once we got to Vandy, they ordered more blood work and a CT scan of neck. They admitted me to the Oncology Intensive Care Unit. Tater was not infected but it was bigger and I was severely dehydrated. Dr. Gilbert made her rounds and ordered more tests:
-Another CT scan of chest and neck
- Ultrasound of Thyroid
Keep in mind, we STILL DO NOT know where this cancer is coming from. Lungs were ruled out. Thyroid ruled out. Head ruled out. Brain ruled out. Throat ruled out. Ovaries and uterus ruled out. Stomach ruled out. Breast ruled out. So Dr. Gilbert says you are an official "Cancer of Unknown Primary" patient. Part of us was relieved because we were tired of all the searching.
Dr. Gilbert ordered to start radiation on Tater to see if that would help. On December 12, I saw Dr. Peter Locken, radiation oncologist at the Roy and Kay Eckstein Cancer Center, and he said it's either melanoma or thyroid and he was going to "hit it with all I have."
Christmas and New Year came and went and I had completed two rounds of chemo. Not only had cancer robbed me of my hair, my job, my health but it also was demeaning. My fatigue had gotten to the point by the third round, Michael had to give me a bath and help me dress. Walking to the mailbox felt like a 5K. I told God "I don't know how I can do this 3 more times." I did not know how I was going to make myself walk into the cancer center and sit in that chair and do this again. Two days later, on a Sunday, I get a call from Vanderbilt. It's my oncologist. All I could think if why is this doctor calling me on a Sunday afternoon. I won't lie, I started to panic. I will never forget her enthusiasm when she said "I think I have it figured out." She had received my results from the genetic testing. She asked if I have any suspicious moles. I thought for a moment and said yes on the back of my right shoulder. She asked us to look at it and describe it. IT WASN'T THERE. I told her it was gone. And she said, "That's it." Melanoma. My genetic testing came back with the gene mutation BRAF which is indicative of melanoma. She said that melanoma can start and then spread and that initial spot will disappear. NEVER had I heard of anything like this. Nor had any practitioners in Western Kentucky that I had seen. This revelation completely changed my treatment regimen. That hard chemo that I was doing... I was done with it and only had to do 1 more round of the "easier" one. She started me on Braftovi and Mektovi, an oral chemo cocktail. I took that for 27 days and started having high fevers each night of 103. I would have red bumps on my arms that would hurt as if I had been punched in the arm. This was a side effect of the drugs. Oh yeah, and, the global pandemic of COVID-19 unleashed its fury. Insert eye-rolling emoji. I took one week off at the guidance of Vanderbilt and tried again the next week. Fevers returned. At this point, we had seen the ENT at Vanderbilt who was going to remove the rest of Tater ;)
On May 5, Dr. Sarah Rohde removed the remaining tissue and biopsied 5 lymph nodes around the cancerous node.
**** DRUM ROLL *******
All biopsies were benign. The oral chemo did it's job perfectly!! There are no words to describe the feelings that come with those words. In the words of my surgeon, we could not get any better news.
Today, I am in remission and am currently taking immunotherapy to prevent cancer from returning. I am back at work. I can throw my niece up in the air and hear her giggle. I think I will always be "looking over my shoulder" to see if cancer is going to rear it's ugly head again. My physical wound has healed and I've got crazy curly hair. And I KNOW, cancer is not enough to stop the plans that God has for me. He has equipped me with a testimony to further spread His love and goodness EVEN in the darkest trials of our lives.
God says in Jeremiah 29:11 "For I know the plans I have for you. They are plans for good and not for disaster, to give you a future and a hope." (NLT)