I’ve been thinking about how to write this for two weeks. This race meant a lot of different things. But first off, it was a super fun weekend away with friends and family.
We took Friday off so we wouldn’t be rushed and enjoyed a beautiful afternoon in Door County that included packet pickup, a little meandering, sunshine and beer.
Race morning in Door County is always weird because it is a late start. I was up early because I always am so had some breakfast, braided my hair, got dressed and then still had lots of time to wait. Once we got to the park we had time to overthink our layers and ditch them as needed. Spoiler: any layers were too many. Mo and I had an earlier start since we were running the half marathon so we left the others and walked to our start line. I lined myself up further back than I wanted, but at what was a reasonable spot for what I could accomplish that day. I set out with my run 9/walk 1 plan and my Garmin beeped at me 9 minutes in so I walked. I felt a little stupid walking that early and when I felt that good, but that was my plan and that was how I trained so I did it. I felt great the first 4-5 miles. By mile 6 I started questioning why on earth I was even running the event. It was getting warm and my body wasn’t happy. Miles 6-7 were miserable. I questioned everything. I didn’t want to do it. I told myself I couldn’t. I was at a very bad place mentally but made myself keep moving forward. I By the time I made it to 8 miles I was feeling better, but I was walking more and I wasn’t mentally okay with that, but I had no choice. Once I made it to mile 10 I knew I could finish, but I also knew I hadn’t run further than that since July of 2016. I just kept running and pushing myself. I had to stop looking t my watch because it was even slower than I had anticipated. I paid just enough attention to be able to spring the last quarter mile or so to the finish. I knew all my friends and a camera were there. Turns out I still have my strong finishing speed somewhere in me and I crossed the finish line fast, strong and with a huge smile. The first thing I saw was my oncologist, with my medal. I knew he was going to be there, but had no idea he was going to hand me my medal. That was unbelievably special.
I don’t know if I fully grasped what I was accomplishing that day. I really just wanted to run a half marathon again. I wanted to have a normal weekend in Door County with my friends. This was the third year we went up and it’s a great little tradition we have started. The video that was put together about me sums it up pretty well. If you haven’t already watched it somewhere else I shared it, take a watch here: My Story They did a wonderful job with it.
While I know I shouldn’t be thinking about my time, but now all I want to do is get back to my sub 2 hour half marathons. I know I can do that. I know I will get there. Now that I have proven to myself I am me again. Running was the last piece of that. I keep thinking I’ll leave all of this behind, but it’s not something that will ever go away. It happened. I went through it. I survived it. But it’s always there. I still stand by my bracelet Cancer is life-altering, but not defining. I just never thought it would still be such a big piece of my life at this point.
To end on a positive note, I think I picked my next half marathon!
Goals and thoughts. So many thoughts. One goal: run and finish my 24th half marathon. (Yes, I went back and counted.)
I have mentally gotten myself to a place where I am okay with the fact that this will be my slowest half ever. It is what it is. I have had a million thoughts of what I should have done, but I didn’t. Getting back to running didn’t come easy to me, at all. In fact it was horribly difficult. This wasn’t a month or two or four off for an orthopedic injury while I was still doing some sort of exercise. This was literally starting from zero. I had no muscle, no strength, nothing. It was a lot harder than I imagined it would be, both physically and mentally.
I ran the Door County Half in 2016 with my running besties (pictured above). It didn’t exactly go to plan, but it turns out I had something like 10lbs of tumors inside of me. So F you body. I still ran a 2 hour half marathon. I was diagnosed 3 months after this race. While I didn’t make it back in 2017 to run, I did go and tailgate a half marathon. You think I joke, I do not. I had the best spectator buddy ever.
What do I expect out of this half marathon? It’s going to be hard. I’m going to struggle, but I will finish. I will probably cry. But most of all I will prove to myself that cancer did not take running from me. I get to do a normal thing. I get to go up to Door County with some good friends, go for a run, eat some kiss ass pizza from Wild Tomato and drink some delicious beer from Door County Brewing Company.
Oh, and get video taped finishing the race. What you say? I have chosen to share my story with my work/treatment facility. They are doing a really nice job putting stories together which you can see at knowledge changing life. They will be interviewing me and my doctors later in May. I have no idea when the video will come out, but don’t worry, I will share it all over the internet. I chose to do this because no one knows what appendix cancer is and people don’t realize what HIPEC surgery is and I’ve gone through an insane 18 months.
So anyone out there who found this blog by searching appendix cancer, know that I am 15.5 months out from HIPEC surgery and I’m running a half marathon. There are dark and scary times, very dark and scary times, but life goes on. I found my post from a year ago when I got my first clean scans and remembered that my doctor told me to live my life. I thought that was going to be harder than it was.
Trust in my body. Trust in my body’s ability to do all kinds of things. This has really been one of the hardest things for me and I think I finally figured it out. I was in one of my favorite yoga classes on Sunday and our instructor told us to choose an intention as she always does. I often choose focus as I tend to have trouble not letting my mind wander during class. On Sunday I chose trust, as in trusting my body. I realized this was holding me back in a lot of aspects: running, yoga, strength work. In two classes of using trust as my intention I have been able to do more and have pushed myself more. I’m sure some of you might roll your eyes at this and that is fine. I used to roll my eyes at yoga too. But then I found Healium Hot Yoga and I never looked back. Awesome studio, awesome instructors, awesome owner. (And no, I’m not getting anything out of posting this.)
My intention of trust and trusting my body goes so far beyond yoga. My body betrayed me. My body betrayed me in such a drastic manor. I was sitting at lunch this past Monday catching up with someone who is now going through cancer treatment and I can’t believe the things that you normalize when talking with someone else who has gone through it: laughing about how awful and itchy wigs are, comparing notes on low white blood counts, laughing about chemo brain. It was strangely cathartic. After lunch a third person said something to me that made me think. She said I never asked why me or at least never did out loud. I guess I didn’t. I didn’t see a reason. That wasn’t going to help anything. The best guess on all of this was a random mutation of my DNA. Aka, my body betrayed me. I do think I stopped trusting my body. I believed in its ability to fight. And fight it did, but these were different things.
I did get back to running last fall and ran a few 5ks, but something in me kept me from really building back up and I didn’t know what it was. I now really think I just didn’t trust my body. I had all kinds of fears that something was going to happen. That all this progress might be for nothing. My body that has carried me through something like 20 half marathons and thousands of miles. My body has fought and beat cancer. I somewhat secretly registered for the Door County Half Marathon in May. I say somewhat as I have been slowly telling people this. I’m finally believing and trusting that I can do this.
One more thing that has really impacted me more than I realized is Gabriele “Gabe” Grunewald, #BraveLikeGabe. If you don’t know who she is, read this piece that Brooks Running posted: Pro runner. Cancer patient. Relentless optimist. Short version: she is a pro-runner fighting a rare cancer. I found out about her sometime in the last year and have been following her all over social media ever since. In addition, she is unbelievably nice. She has responded to me on twitter and instagram in the sweetest ways.
I finally trust my body again and that feels good.
I haven’t been normal sick in a long time. Everything in the last year and a half, probably longer, was cancer related. I successfully avoided getting anything last year by avoiding people and friends being considerate of my compromised immune system. I’ve been terrified of a fever for a year and a half. Even a low grade fever meant I had to go into the doctor. I have no reason to be at this point. I don’t have a compromised immune system anymore. Well, other than no spleen, but I had a bunch of vaccines because of that.
I’ve been sick since about New Year’s Day. The other night I finally had a fever. A fever still scares me. A lot more than I thought it would. It wasn’t high enough I would have had to call the doctor even a year ago, but it still scared me. I know it’s probably a simple virus, maybe the flu, probably a cold, but that doesn’t mean my brain doesn’t go scary places. Thankfully I have my silly nursemaids, that are very good at snuggling and sleeping, to keep me company and don’t judge me for whining a lot and not getting off the couch.
I’ve been laying in the couch miserable for days and all I can think is this is so terrible, but then I think no, it’s not that bad. It’s 1000x better than a year ago. But being sick means something so different now. Somehow a cold isn’t just a cold. Getting sick reminds me of all the awfulness I went through. Maybe it’s because a year ago I was prepping for the mother of all surgeries.
I feel like a year of my life was stolen from me and even though I’ve been living it up over the last six months I think all these one year memories are upsetting me more than I realized. They aren’t good reminders. I mean the one year from my last day of chemo was a nice thing to realize, but now we’re coming up on my surgery and the miserable six months that followed.
I have my one year scans coming up really soon. Maybe one of these days I won’t be counting everything from one year ago.
I’m going to ignore all the bad and the ugly this year. That was my 2016 post. There was too much of that. And you all already know about that and experienced it with me. Instead I’m going to look at the good pieces, the progress. Because I sure as hell couldn’t have imagined most of this a year ago.
I have had three sets of clean scans! My body has no evidence of disease! I actually use the past tense now: I had cancer.
I feel like myself again. I am running and getting stronger in yoga every week. (My SIL, the yoga instructor, told me I looked strong. PS. She’s the best!)
I went to Italy for my niece’s first birthday and go to spend time with my brother and his family.
I went kayaking, hiking, biking and canoeing with friends. I had no idea if and when I was going to be able to do these things.
I attended four Badger home games! (I honestly considered not renewing my tickets last spring in fear that I wouldn’t be able to go to a game again.)
I went to Paris over Thanksgiving and had a truly amazing trip with a great friend. We drank lots of champagne and hung out in the caves at Pommery with 18 million bottles of champagne. Also, why can’t I drink champagne everyday?
I think less and less about the truly horribly parts of this last year.
Friends, family, acquaintances, internet friends, all showed their true colors and let me tell you, there is so much good in this world. I might never be done thanking people for being there for me.
And the fact that I truly never let cancer take over my life.
I hate Breast Cancer Awareness month. I know that’s not fair or reasonable, but I hate seeing pink crap everywhere. I hate that they spend a whole month making people aware of a disease people are already aware of. I know people currently fighting the disease. I know people who have survived the disease. I know people who have not.
Every single time I read about another 20 or 30 something woman going through cancer, chemo and surgery, I cry. I cry for her. I cry for me. I cry for all the people going through this. I know the month has raised lots of money for breast cancer research and that is great. I will never ever say one disease doesn’t deserve the research dollars. There will never be enough research money. I get that. But there is no Appendix Cancer Month or Rare Cancer Month for that matter. There is a Rare Disease Day. One day, that’s it. For all the rare diseases out there. I know it’s Breast Cancer Month, but I want to share some basic information about Appendix Cancer because I got a cancer that I didn’t even know existed. And nothing about it is fair and I know that’s life, but sharing a little information about my disease will make me feel better, even if for a little while.
Disclaimer: I am not a medical professional. I am in no way giving medical advice. Consult your doctor. This information does come from medical professionals. Links at the bottom.
Appendix cancer is diagnosed in fewer than 1,000 Americans each year
Most cases of appendix cancer are found when a person has surgery for another condition
The outcome for appendix cancer depends a great deal on the size of the tumor
Appendix cancer usually does not cause symptoms until it is in an advanced stage and has spread to other parts of the body
Appendix Cancer Types
Carcinoid tumors: About half of appendix cancers are carcinoid tumors. Carcinoid tumors are most often found in women in their 40s. Most carcinoid tumors are small, and they often can be treated successfully.
Non-carcinoid tumors: These tumors begin in the epithelial cells that line the inside of the appendix. Most epithelial cells produce mucin, a gelatinous material. These tumors have a tendency to spread, and the success of treatment depends on several factors.
Pseudomyxoma peritonei (PMP): Mucin within the abdomen has few tumor cells, but cells may spread outside the appendix into the abdomen. Adenocarcinoid tumors, also known as goblet cell carcinomas, have characteristics similar to both carcinoid and adenocarcinoma tumors of the appendix. Most patients are diagnosed in their 50s.
Surgery is the main treatment for appendix cancer.
Chemotherapy may be used with surgery.
There are no appendix cancer specific chemos. We get the same ones used for colon cancer.
If appendix cancer has spread within the abdomen, the most effective approach usually is:
Cytoreductive (tumor debulking) surgery to remove the tumor and mucin in the abdomen. Parts of the intestine, gallbladder, ovaries, uterus and lining of the abdominal cavity may be removed.
Hyperthermic intraperitoneal chemotherapy (HIPEC), also known as heated chemotherapy, which is performed during tumor debulking surgery. The abdominal cavity is filled with a chemotherapy drug, which is heated to more than 104 degrees Fahrenheit. Your abdomen is rocked gently back and forth for 90 minutes to ensure the drugs go to all areas of the abdominal cavity.
A week or so ago I found myself on the couch, covered in cats, reading a book thinking I should be doing something else, that I shouldn’t be doing that when a year ago I was stuck on that very same couch. I try so hard to think I’m over everything. I don’t know why I think I have to be over it. I don’t know why I think I have to move on. This huge thing happened to me. I survived stage iv appendix cancer. I am living disease free. I want that to mean everything is normal again, but I’m really not sure it ever will. I know I will never be the same. I have to remember the mantra I wear on my wrist, Cancer is life-altering, but not defining.
I’ve made huge progress. I am starting to feel strong again. I feel like me, most of the time. I don’t want to be the girl who always talks about her cancer. I do not want to be that person. But I find myself being that person. I don’t want to be her. I want to just be me, Renee, not Renee who had cancer. I don’t think I can be that person. How do I not be that person?
Yes, I ran a 5k, but omg is running difficult. I have had lots of orthopedic injuries over the years, but starting over has never been like this. It’s like I have a new body, and I guess I do. While I am now a healthy weight I am much lighter than I used to be. I am minus more organs than I feel like typing out. I am not nearly as muscular as I used to be. For some extra motivation I have a 10k in October. I found myself a training plan and am kind of following it. Maybe I’ll be able to run 6.2 miles, maybe I’ll run/walk 6.2 miles. Whatever it is, I will finish. And for that I will be grateful.
On a positive note I got to go to the home opener for my beloved Wisconsin Badgers at Camp Randall. I posted that I almost cried. I did cry, which probably surprises none of you. I was so happy to be there. I know it might seem crazy to some of you that a football stadium is one of my favorite places in the world, but it is. That stadium will always be a special place to me. And to think I almost didn’t renew my tickets. This one game was worth it.
So I will continue to move forward and continue to move on and continue to be me. I am the girl who had cancer. I’m also so much more. I’m a daughter, a sister, an auntie, a friend. I am a runner, a yogi, a hiker. I read books and drink beer.
PS. Thanks for always listening to me and for accepting every me. I appreciate it. I appreciate you listening to me and letting me be me.