On April 5th of 2019 I went to an abdominal ultrasound after going to my school physician with complaints of abdominal pain and frequent urination. At the time I was a senior studying Kinesiology at the University of Massachusetts Amherst- I was a little over a month from my graduation day, and I was accepted by and committed to MCPHS DPT program. That morning I got the call saying I was accepted into the MASS General Hospital DPT program. Later that afternoon I was told I had a large ovarian tumor. In the days that followed I went for an MRI, got blood work done and met with two surgeons who told me I likely had some sort of fibroid or large cyst and we would need to remove it along with my ovary and Fallopian tube. I was told due to the location of the tumor and because it was currently contained within the ovarian capsule that we could not biopsy it until surgery.
My surgery was scheduled for April 26th, 2019 - two weeks before my expected graduation date. I went in for my surgery and later that night woke up and asked my family what the tumor had been, a cyst? A large fibroid? Possibly a dermiod? I had cancer. My tumor pathology came back as being signet ring cell carcinoma with an unknown primary. I had had my appendix removed along with my left ovary and Fallopian tube, there was no sign of cancer there. While in surgery I had a mammogram, an upper endoscopy and colonoscopy to look for a primary tumor, none was found.
In the 3 days after my surgery I stayed in the hospital to recover and had a CT of the chest, abdomen and pelvis, no primary tumor was found. I was released from the hospital on April 29th of 2019. I went for a PET and CT combo on May 9th, no primary tumor was identified. I had not given Mass General DPT an answer to their acceptance and was removed from their accepted list later that evening.
I moved back to school on May 3rd, and walked at my undergraduate graduation on May 10th of 2019.
On May 13th I had my first consult with Dana Farber Cancer Institute, my oncologist explained what he believed to have happened. I likely had a tumor in my GI, this metastasized to the ovary, once there it grew rapidly, to 15cm and I began to feel symptoms due to its large size. So I still had another tumor somewhere? "Kendra, your a mystery" he said, "We may never know where the primary tumor is, or there is a small chance there isn't one" this was not the lottery I had wanted to win at 21 years old.
I was presented at tumor board of the hospital I received my surgery at, and then I was sent to the Dana Farber tumor board. During this time I was referred to fertility- I was likely going to have to go through some sort of chemotherapy. I completed one cycle of IVF between 5/17/19 and 6/10/2019 and froze 9 eggs. Each morning from day 1-6 I had an injection into my abdomen 1 inch left or right of my navel. Then at 7pm every night I would receive another injection. On days 6-the end I was given two 7am injections and had to go to either the Brigham or to Foxborough between 7am-8am every morning for blood testing and for internal ultrasounds to observe follicle growth. This obviously caused trouble because I must leave my house by 5am to get into Boston for 7:30 am. We would leave early and stop in the Framingham service plaza to mix my injections and administer them. Then we still were getting the 7pm injection until the last day where the trigger shot was given in the gluteus maximums. Egg retrieval day was 6/10/19, where retrieval was easy on me and a success all around.
Also during that time my port way placed on June 5th 2019. This was the toughest day of my journey so far. The funny thing is I went in with my mom, I was talkative and joking. Even as the nurse put the IV in (I have panic attacks every time I get an injection) I was cool as a stinking cucumber. Then it was time for me to leave my mom and the PACU nurse and head into the OR. At this point they came in to give my antibiotics through the IV. I was in so much pain and could not stop screaming. I knew the IV should not have felt like that but I couldn't catch my breath long enough to form words. After the first syringe of fluid she went to put in the other one and I finally told her no, she felt the medial portion of my upper arm and felt the hardness of the fluid build up. Then my fingers went numb in that arm as she began to move around my body in a way that told me she know something was seriously wrong. She quickly pulled out my old IV and explained that the needle had gone through the vein and was dumping the antibiotic into my upper arm, NICE. The nurse and my mother got me calmed down enough to get in another IV and some anesthesia meds before the OR nurse wheeled me away. After that surgery I was sick all afternoon and was in pain for weeks even though they prescribed to pain medication. I think I will have a later journal post talking about the ups and downs that come with having a port.
On June 18th of 2019 I began my six month chemotherapy journey. I would given Fluorouracil and Oxaliplatin every-other Tuesday in the hospital and I would be hooked up to a pump for 46 hours after my hospital visit that would deliver more 5-Fu that my boyfriend would disconnect me from at home. The first infusion was a serious wake up call. Before this, I thought I was still going to go to grad school in the fall, I thought I would have a summer full of relaxation and fun. Until I woke up Wednesday morning the sickest I have ever felt. About twice to as much as 7 times per waking hour I was puking and at around 5 pm I lost vision in my left visual field. I called the oncologist that is in charge of my infusions and was told to go directly to the ER. I remained there being given IV atavan and benidril and oral compazine for 27 hours puking non-stop and zonked out on IV meds. They did a brain MRI on June 21 and sent be home that night where I persisted to puke for another 4 days.
By the second treatment on 7/2/2019 I felt like a pro. I had discovered CBD and THC in capsules that has improved my appetite and decreased my nausea. This time I only puked for two days and was feeling 100% by Saturday afternoon. On 7/8 I want to a vision consultation for the sight deficits and was told that there was no way my problem had to do with the eye as it was bilateral, commonly this type of symptom presentation has do to with the neuron carrying the signal to the brain or the brain itself. Again we had no answers as to what was wrong with me.
I went into genetics counseling at Dana Farber on June 10th and I got the results on 8/5 that after looking over 85 different genes I has no mutations that could have caused the cancer. The genetic counselor said "Kendra, this means that the tumor happened by chance, illogically, and for no reason". This news devastated me. I really had just happened to have won the wrong lottery. All of the nights I have stayed up thinking 'well, maybe there is a reason' came rushing back. I called my cousin first, who had had breast cancer at a young age, and through my tears I told her the news. she explained to me this is the best news because my parents, and my brother and hopefully my 9 beautiful little eggs did not carry any cancer gene. For my case it was bad news- it meant no answers. But for my family and for my future children it was a relief that they would not have inherited the same mutation I had.
Infusion on 7/16 was long, as nothing was running smoothly at the hospital that day and I had a neuro appointment later that day. On 8/6, infusion went well except for the person who came with me fainted and my mom and brother had to come out to bring us home. Infusions on 8/20 and 9/3 have both only had one puking episode and I am feeling much better than that first two infusion so that is a win.
The 16th and 23rd of august I completed another MRI and a blood flow CT on these respective days. Hopefully ruling out an TIA or a seizure.
I have to be honest with all of you, I have been putting off writing this post for awhile now because it has taken some time to get a grip on, and to accept. After the fight to have my ultrasound results read and the clear PET scan I told you all about in my last post the pain and swelling in my groin did not go away. I had my colonoscopy, which was clear, and another CT scan which was clear before seeing my oncologist to get my port removed. At this appointment with him he saw the swelling for the first time in person and ordered a repeat ultrasound. The inguinal lymph nodes on my left size had grown and formed into spheres. Next, he ordered a biopsy, and on August 10th I was told that signet ring cells are in my left inguinal lymph nodes.
This was only 3 weeks before school is supposed to start. This means the 6 months of chemo was ineffective. This means more treatment.
These were the main things I had to come to terms with before opening up to you all and I didn't want to write to you without a plan. So the plan is... removal of the bilateral effected nodes. This will be done at Brigham and Women's on September 10th by a GYN oncologist from Dana Farber. After that the nodes will be sent to pathology to find out if I am a candidate for immunotherapy. The plan also includes beginning school next week.
I am mostly in shock still, and a bit in denial, but I am grateful that my program is being flexible and supportive in letting me begin this fall instead of pushing my start date back another year and I am grateful that I continued bringing up the pain and swelling despite the 'clear' CT and PET scans.
As always I will try to keep you updated on here as the surgery approaches. Attached is a picture of me at Brigham before my biopsy with my mask on for COVID-19 that I thought you would all appreciate.
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