Jeremy’s Story

Site created on September 9, 2021

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TLDR; I was diagnosed with stage 4 appendix cancer in May, started chemo in June, and am heading to surgery on Sept 30th. Wish me luck or send me prayers!

I’m not really sure how to start this. it’s has been a difficult decision on whether I was ever going to ever talk about this publicly, but as I approach what others who have been through this call “the mother of all surgeries” I’ve felt compelled to share some of my story and create a platform to share continual updates for family and friends about my recovery.

So, here it goes. Hello, my name is Jeremy Spencer, and I have appendix cancer. Wait, wrong support group… Whatever.

Everything started back in April. On the 28th after laying the kids down for bed, I was playing video games in my room and my wife Mallorie was lying in bed reading a book. All of a sudden, I became very nauseous and began to throw up, not to long after the diarrhea started and the stomach cramps, oh boy the stomach cramps. Literally, the worst pain I have ever been in my life. I suffered through it for four days, I couldn’t eat, I couldn’t sleep, and I felt like I was dying. I kind of was. On May 1st we called an ambulance to take me to the hospital, and after waiting eight hours in the ER, having multiple scans and bloodwork done, I was admitted to the hospital for polymicrobial sepsis, I had two abscesses near my appendix, and what they thought was appendicitis (with concerns it could be cancer).

To be honest my hospital stay feels a bit like a bad dream. I was out of my mind, I was in and out of consciousness most of the time, I didn’t have the compacity to watch TV, play on my phone, or really do anything aside from lying in bed in the dark.

After three days of marginal improvement in the hospital, things started to back track for me. I was sent to have my abscesses drained and that made me feel even worse still. On the sixth day of my hospital stay, I was sent to have a CT scan done and the imagining showed that my appendix had exploded and there was a tumor inside of it. The next day I was sent into surgery for them to look around and see what was going on, and that surgery turned into them cutting a 6-inch line down the middle of my stomach because when they tried to do the surgery laparoscopically, they found mucin, which is a clear sign of cancer. Once I was completely opened up, they ended up taking out the tumor and portions of my small intestates, colon, and omentum due to adhesions that formed from the cancerous mucin that my appendix created. My abdomen was then flushed out and I was stapled shut.

I spent another 7 days in the hospital recovering, during this time, the pathology came back and confirmed I have stage 4 mucinous adenocarcinoma, a rare cancer that only 1 in 2 million people are diagnosed with every year.

I, then, with the help of my amazing sister, transferred my care to the University of Chicago. I am so fortunate that we are so close to a place that specializes in appendix cancer. The local oncologists were going to treat me for rectal cancer, which would have been a different chemotherapy cocktail and possibly less effective and with no coordination with a specialized surgeon who is capable of preforming “The mother of all surgeries” (CRS-HIPEC).

I started chemotherapy on June 10th, on a regiment call Folfirinox (Fulorouracil, Irinotecan, and Oxaliplatin), and as of September 3rd I’ve completed 5 cycles of this. Honestly, I’ve had my ups and downs coping with the side effects, both physically and mentally, but I feel like overall I did a good job. I’ve maintained a mantra of “I may have cancer, but cancer does not have me.” I’ve managed to be able to take my kids on fun trips, I have been able to work up until this point and still provide for my family. I am and will always be extremely grateful for that.

On September 16th, I had an exploratory surgery to see the progression of my disease and whether or not I am a candidate for CRS-HIPEC (which is where they surgically remove any cancer they find and then fill my abdomen with a heated chemotherapy. They’ll pour it all over and then gently rock me back and forth for about 2 hours, to ensure it hits all the nooks and crannies). Fortunately, I am a candidate and I have the go ahead to receive the surgery on September 30th. Yay. I will also resume chemotherapy in late October depending on my recovery.

Tomorrow, September 18th, will be my last day of work for a while, as I prepare myself and my family for the big show and then for the healing process after surgery. It is anticipated to be a long journey and I don’t expect to be able to go back to work until January. It’s possible it could be longer than that, but I am optimistic I can make a full recovery in that amount of time. Any well wishes or prayers will be greatly appreciated!

I will try and keep everyone updated on how I’m doing through this page.

Newest Update

Journal entry by Jeremy Spencer

 This week I received my 9th cycle of chemo therapy and I am feeling overwhelmingly grateful and hopeful. Two weeks ago I had my first CT scan, following my surgery in September, and so far the scans are showing no evidence of disease! That is to say, no evidence that there is any freakin cancer inside of me right now! Both the Oncologist and Surgeon seemed very pleased with my results thus far, and one of them even used the words cancer free!!! It's hard to express the feeling, but it just feels so awesome right now! It's like the phase 'Light at the end of the tunnel' but right now it's like I can feel the warmth of that light, as it's so close.

This is a great start for this next part of my journey, as so far, everything has been best case scenario. Best case scenario from how the chemo therapy works on my body, to how well the surgery went, to how well I've been recovering, and now my scans. I don't know what I would have done without my tribe, my family, in one of the worst things to have happen to me, I've never felt alone or unloved. I appreciate so much all the thought and prayers. I appreciate the friends and family that have reached out, visited, and helped when they could. You all have no idea how much it means to me.

Now I still have work to do, I'm faced with three more cycles of chemo to improve the odds that a reoccurrence of the disease doesn't happen, but chemo is being rough on my liver. I keep having my chemo delayed due to high liver enzymes, but we know it's because of the chemo and not likely some other problem, but it does elongate this whole process. Within the the first year, statistically, there is a 50-60% chance that this will come back and I will have to start this whole thing all over again, but when I make it past the one year mark that number drops considerably and then after 5 years drops to the low single digits and we all throw a giant party!!

So, 9 cycles completed and 3 more to go! Then I'll have scans and blood work every 3-4 months for the next 2 years, then every 6 months for 3 years, and then every year for the next 5.  If you can let's keep praying and sending positivity to my family and I, and keep getting these best case scenarios!

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