Author: Renee

Renee

Trust

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.

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I finally trust my body again and that feels good.

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Renee

Getting sick after cancer

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.

IMG_20180106_152754_420.jpgI’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.

IMG_20180105_091227_175.jpgI’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.

Renee

2017: The Good

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.

The Good:

  • 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 weekIMG_20171111_114444_441.jpg. (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.)
  • IMG_20171124_171054_848.jpgI 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.
Renee

Lost in a sea of pink

appendix_cancer_awareness_3_postcard-r26bc30835cf6435598d04e876793e38f_vgbaq_8byvr_324
We have a ribbon too.

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 scansrare 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.

Facts

  • 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 TypesFacts

  • 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.

Treatment

  • 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.

Sources:

MD Anderson
Froedtert and MCW
ACPMP Research Foundation

Renee

Moving On

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.

20170819_193026I’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.

20170901_193207On 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.

Renee

365 Days

IMG_20170808_215216_930365 days ago I was diagnosed with cancer. 365 days ago my life changed in an instant. Over the past 365 days I have had two surgeries, one was 12 hours long, 8 rounds of chemo, lost my hair, 3 small procedures, so many scans I won’t even try to count (and had to drink gross contrast solution), spent 5 weeks in the hospital, actually thought about death in a very real and scary way, healed, had two sets of clean scans, and most importantly become myself again. I read something recently about celebrating your cancerversary (which I think is stupid) and I refuse to ever celebrate being diagnosed. Instead I will continue to celebrate living.

20170707_194224I still cry over things (including writing this post), it’s amazing what triggers me, but not in the same way I did a year ago. I almost cried at yoga this morning thinking about it all but my amazing instructor set today’s intention to “now” and it was perfect. I am still so sensitive/sad over my hair that it makes me cry almost once a week. Please, please don’t tell me it looks good. That doesn’t help and doesn’t have anything to do with how I feel about it. I will say this 1000 times if I have to. I didn’t choose this. I didn’t think I was going to lose my hair. And I did. And it was traumatic. And I will have to deal with that for as long as it takes me.

20170806_103338I have learned and been reminded of how utterly amazing the human race is. Terrible things happen every day and there are horrible people in the world, but I was surrounded by the most amazing people. All of you out there in the world that visited me, sent me cards, sent flowers, sent good wishes, reconnected with me, sent socks and coloring books, sent meals, paid to have my house cleaned: I can’t imagine the last year without each and every one of you. I have read countless posts about people’s friends and family disappear during cancer diagnosis and treatment and I never once felt that. Not once.

IMG-20170728-WA0000Also in the last 365 days, I traveled to Brooklyn for a wedding, Seattle for Thanksgiving, Phoenix to relax and while each one of those trips had limitations, some much larger than others, I was still able to go. I was weak, but determined in Brooklyn. I was sick and miserable in Seattle, but so happy to be surrounded by family. I was weak and tired in Phoenix, but so so happy I got to spend time with my cousins. I started running again. I started going to yoga again. I started going to Barre classes. I’ve gone kayaking. I’ve gone hiking. I raced a 5k. If you asked me 365 days ago if I thought any of that was going to be possible I would have said no. While a lot of the last 365 days were miserable and scary and unpredictable and awful; there were also so many good days.

Cancer is life-altering, but not defining. 

Renee

Dear Representatives

I have been calling and writing my representatives for months now. This is the latest of what I wrote. I decided to write to all of them, not just the ones I disagree with. There were some slight variations in the wording. My feelings come as no shock to anyone who knows me. I am a real person with a real experience and my representatives will hear from me.

Dear Representatives,

I am a 32 year old resident of Milwaukee, WI. Only to Tammy: You were my congresswoman in Madison when I was a student and I was thrilled to vote for you when you ran for Senator. I’m writing to share my personal health story. A year ago I was an active, healthy 31 year old. I was in, probably, the best shape of my life. Except that I wasn’t. I had a body full of tumors that I didn’t know about. I went to my primary care doctor with complaints about bloating and some other fairly non-descript symptoms that I had mostly written off as being a woman. Thankfully, I have an wonderful primary care doctor who listened to me and ordered ultra-sounds. Within less than a week I was referred to a gynecologic oncologist who told me I needed surgery immediately. There was a good change I had ovarian cancer. On August 10, 2016 I underwent surgery to have an ovary removed, with the real possibility of a full hysterectomy at age 31. Well, they didn’t do a hysterectomy, but they did remove both ovaries and my appendix. I was diagnosed with appendix cancer that day. I had never heard of it before. I knew nothing. I was suddenly talking to additional, very specialized, physicians and being told that I would need another, much more invasive surgery. Less than 4 weeks after this initial surgery I began chemotherapy. I went through 8 rounds of chemo while also recovering from surgery. I started to get stronger and then my chemo had to be switched to a stronger chemo. I lost my hair. I felt miserable. My Thanksgiving, Christmas and New Year’s Eve were all ruined by this. On January 20, 2017 (this date is not lost on me), I underwent a 12 hour cytoreductive and HIPEC surgery. This means my surgeon went in to remove all visible tumor, and several more organs, and then a hot chemo was poured into my abdominal cavity for 90 minutes. I have very few memories from the first days after this surgery, but I do know I ended up in the surgical ICU. I ended up in the hospital for five weeks due to an infection. Thankfully my three and six months scans have been clean and I have no evidence of disease today. This is only true because of my health insurance. My hospital stay was billed out at almost half a million dollars. I am alive today and not broke because of my health insurance. I am truly terrified of everything that has been proposed. I will have a pre-existing condition for the rest of my life. I will need scans every year for them to monitor me. I was healthy until I wasn’t. This is why insurance exists and it breaks my heart how many people don’t understand that. Only to Tammy: I thank you from the bottom of my heart for fighting for me, and the people of Wisconsin. I am willing to share my story with as many people as I need to.

Thank you,

Renee