Hello and THANK YOU for being here! If you know me and are a loved one, I understand how difficult it is having someone in your life with a serious cancer diagnosis. Having lost my mother to just one of hundreds metastatic cancers when I was 25, I get the helplessness and pain. There are no words to fully express the gratitude to those bravely joining me in this journey.
To those of you I've not met or who do not know me, THANK YOU from the bottom of my heart for standing here in compassion and/or because you or someone you love has been diagnosed with this rare disease. It is my goal not only to survive this, but to raise awareness so that others can to.
I appreciate how boring or overwhelming this stuff can get so to all who'd like just quick reference or TL;DR:
1. I was first diagnosed with SRCC (Signet Ring Cell Carcinoma, a rare often asymptomatic and aggressive cancer) in February 2017.
2. My treatment was: laprascopic removal of my appendix to rule out cancer which turned out to be likely origin, removal of part of my ascending colon and surrounding lymph nodes where it spread, and 6 months of Folfox chemotherapy every other week via hospital infusion and home pump over 48 hours.
3. I was considered in "remission" until this past October 2020 after a routine CT scan revealed colon thickening and continued ovarian enlargement and colonoscopy confirmed SRCC.
4. Treatment now has been: surgery with the intent to remove and resect affected colon along with total hysterectomy unless it was found the cancer spread and chemo.
5. Laprascopic showed it indeed spread so only biopsy was done and I am a stage IV patient with colon, ovarian, fallopian, cervical, vaginal and parateneum SRCC.
6. My chemo began December 1st and this time as Folfiri to minimize further neuro damage from last time.
Mid 2016, at my doctors urging, I made a visit to Highland Hospital's emergency department. I visited my doc with a fever and severe abdominal and pelvic pain. As she examined me, my doctor noticed me wince at pressure applied on my right side; pain there wasn't noticeable to me, as the pain was concentrated in my left side. I got a *scolding* for not coming in sooner, appendicitis was suspected; at that time I was so thankful to have had a 20+ year relationship with my PCP who really knew me. Scans in emergency revealed diverticulitis. And a small spot on my appendix that was "nothing to worry about". I stayed in hospital for one week being treated for the diver infection and during my stay and subsequent follow ups, it was again mentioned that the spot on my appendix was likely nothing; there was a "one in tens of thousands chance of it being any concern". Still, I was directed to make an appointment to get it out for biopsy, and was given the impression there was no rush. So I didn't rush. I figured I'd wait till the New Year for insurance purposes. January and February, I felt off. A nagging feeling but also my lymph nodes seemed to be "buzzing". That may sound weird, but not sure how else to put it. My neck near my collar bone felt swollen, but I was the only one who noticed it. This is something I'll always go back to and learn from as it is all too often that while describing symptoms to health care professionals (most especially doctors) we are told in one way or another (or even directly) that they do not exist. To all reading: INSIST. Tell everyone you speak to until you are heard. So my gut pushed for the appendectomy to happen ASAP. It was pretty standard, I guess, though I had no relative experience. Up until now I've been pretty darn healthy, or enough so to not warrant surgery (that time I broke my pelvis and finger in a gnarly car accident in High School excluded). I had a week's time from work and looked forward to getting back regardless of it's high stress and toxic environment. Then I got pneumonia. I had to stay home longer. The next day my surgeons nurse called, saying she'd been trying to reach me (anyone who knows me understands my mercurial relationship with phones, lol). Honestly, I'd forgotten about the biopsy and wasn't worried. "The biopsy is positive for cancer. Its a rare one called Signet Ring Cell Carcinoma. We had to Google it. Don't Google it", she said. Fast forward from ascending colonectomy, removal of my surrounding lymph nodes, six months of Folfox chemotherapy and the incredible support of many dear people, I have Googled it. And since September of 2017, I lived as what I thought was cancer-free. My routine CT this August was found to be suspicious, a thickening of a small section of my colon. Cancer takes the cake at being shitty (is this a poop-pun? maybe 🤷) but SRCC sometimes likes add onto the crap by not being particularly detectable in blood markers or showing up in scans including PET. My oncologist ordered a PET regardless, which didn't show much then sent me off for a colonoscopy. My colorectal surgeon was certain afterwards that it was indeed SRCC. Biopsy results next day on October 20th confirmed this and my surgeon reached out to her Women's Oncologist colleague to review the enlarged ovary the scan showed; another thing that hadn't been of concern considering ovarian cysts have come and gone with me, but this one remained. It was decided they would together perform laprascopic surgery the next week that could be total hysterectomy and colonectomy/resection or just biopsy depending on whether or not the cancer spread beyond their expectations. It turned out to be the latter, being in my colon, ovaries, fallopian tubes, cervix and paratenium. I'm fighting to learn more and pursue more aggressive treatment with specialists. Unfortunately these do not include the doctor's I have. Thanks to donations, I was able to consult with Dr. Armando Sardi at Mercy Medical in Baltimore, MD. He has cured Stage IV SRCC patients with HIPEC which is a surgical chemotherapy treatment. There are no HIPEC surgeons in Rochester NY, so depending on where I decide to go, I must travel. Meanwhile, it is recommended by all that I do begin chemotherapy ASAP, which after today's port placement, will be next week 11/30 and 12/1. I'm going to give it my all!! And I believe I can be cured. None of this is possible without the amazing people in my life, and that includes you. Infinite thanks for reading and being here in support 💙
Some incredible people in my life have helped me to get more opinions and care. If you'd like to contribute, you can at the following. My appreciation is endless!
gf.me/u/y9zhjk https://www.paypal.me/aliciabeatssrcc https://venmo.com/IronYoko