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.
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 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 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.
I went in for my six month scans on Monday morning. Six months from the worst surgery you can imagine. Six months to become myself again, to have my body back. Six months. It’s also a year from when this all started. The worst, scariest, most difficult year of my life. One day while on vacation I actually opened Timehop and found this post. I had no idea how true that stupid tweet was. I had no idea that I had tumor growing inside me, but I did know something was wrong with me. It was only a few weeks after tweeting this that I went in to see my primary care doctor and my life changed forever.
I met with both my medical and surgical oncologists this morning. They both walked into the exam room full of smiles. I can’t tell you how nice it is to see them this happy. My labs were all normal. My tumor markers are good. I scans are still clean, and maybe even look better than they did three months ago. They tell me I’m the poster child for activity and have no worries about my recovery right now. I even get to have my port removed next week. They tried to schedule it for the day of the Bacon Race. No, I will not have a small surgical procedure done on they day I’m supposed to run my first 5K in a year. They easily moved it to Friday.
After several canceled trips due to diagnosis, chemo and surgery I finally made it to Italy to celebrate my niece’s first birthday and it’s probably one of the best vacations of my life. I’m so grateful to have made the trip and to have been an almost normal me on this vacation. This little girl is my whole world even though she lives so far from me; so I bought her green sandals and we went for a walk in the piazza.
This was very literally one of the best vacations of my life and it had nothing to do with it being in Italy. There were points in the last year where I wondered if I’d ever get back to Italy and visit my brother and his family. There were times I worried I wouldn’t be here to watch my niece grow up. Those thoughts broke my heart. Thankfully I am sitting here returned from a wonderful trip to visit my family. My brother married into an amazing family. I love my SIL with all my heart and her family. I am so grateful that I got to go on this trip.
I’m trying really hard to not be someone who posts about every run or workout they do because that’s f-ing obnoxious and I don’t want to be that person. But I am SO excited with every run. I still can’t really believe that I am doing this again. I can’t believe my body is letting me. In the last week I have switch from walking 3 minutes/running 2 minutes to walking 2 minutes/running 3 minutes, meaning I am running more than I’m walking! It feels good. It feels natural. I don’t even mind that I’m running circles around the park. (It’s 1.5 miles around the park, so it’s not really that bad.)
In my effort to not be obnoxious this is the only badge I’ll share. This is my fastest 5K so far. My initial goal was to get to 1 minute walking/4 minutes running by the Bacon Race but now my secret goal is to run the whole thing. I still have a month to get there. I don’t have a clue what my pace will be, but I do know I’ll be able to run most, if not all, of the 5K.
I’ve been consistently going to Yin Yoga now for a few weeks and it continues to feel good. Especially when I’m stupid and run three days in a row. Strangely enough my body still doesn’t like that. The yoga feels great and I know the stretching is good for me. I’m already excited to move on to more advanced classes, but I’m also terrified of what my body can’t do. Almost every morning my body is tight and it takes me a bit to loosen up as I walk downstairs. It doesn’t hurt or feel heavy anymore. It’s mostly just a reminder that my body is still healing.
This is the scar down the middle of my body. This isn’t even the whole thing. It goes lower than I’m willing to share with the world. I’m not embarrassed by my scar and I’m willing to share it now because it’s healing really well and I’m no longer ridiculously underweight. It’s not allowed to get sun though so I had to buy new swimsuit tops. My body was literally cut in half and I have to remember, which isn’t hard to do, that it takes time and each step is an accomplishment. Someday I might have abdominal muscles again.
I went to yoga last night. It was a Yin class. Yin yoga is more passive and slow-paced and exactly what I needed. I really thought I wouldn’t be able to do much, but really I was able to do almost everything. My body remembers yoga! I want to take a minute to give a shout out to Robyn at Healium Hot Yoga who has been so nice and generous with me. She runs a wonderful yoga studio in Bay View and I highly recommend it to anyone in the area. There are all kinds of different classes and I can’t wait until I have the strength and ability to do more of them. I am in no way being paid or compensated for saying this.
I keep being amazed by what my body remembers and what I am able to do. My body remembers how to run. My body remembers how to bike. The human body is an amazing thing. Mine has been through hell and back in the last year, but it’s finally my body again. I’ve moved up to walk 3 minutes/run 2 minutes and am running under a 10:00 minute pace during those 2 minutes. It feels so good to run again. I’m taking it slow and at some point I’ll be fully running again. I’ve decided to be reasonable and nice to my body and mind and not even try to run a half marathon until spring 2018. I’m running the Race for the Bacon 5k at the end of July and am pretty sure I’m going to sign up for the Milwaukee Marathon 10k in October.
I didn’t get to run Ragnar Chicago this year. It would have been year 7 for me. It got difficult for me when race week hit. I volunteered for my team instead. That was a lot of fun and made me not miss running it as much. Plus at 9:30 I got to go have a beer with my fellow volunteers, then go home and sleep in a bed. It was fun and I’m really glad I volunteered for it. I’m still part of the running community and that never went away.
It’s sometimes baffling to me that almost 5 months ago I was in a hospital room unable to get out of bed. All those little walks down the hallway, that I didn’t want to do while I was stuck in the hospital, were worth it. It wasn’t easy. It wasn’t fun, but I’ve made it this far. If I ever stop running it will be my choice and not because of what I went through this last year. I could lie and say I don’t think about it every day, but I do. I don’t know if I ever will stop, but at least now there are a lot of positive thoughts related to it all.
On Monday I was sore from yard work. That has to be one of the most normal things I’ve said in months. I mowed my own lawn. I planted flowers. I cleaned my house. I did laundry. All on my own. This is a big step. I still had to sit down and rest a few times. And watch an episode of Billions. But I was able to do all of that.
On Saturday, May 20, four months since surgery, I ran for the very first time. It wasn’t much and it wasn’t far, but I ran. It felt weird at first but my body has not forgotten how to run! And that is amazing to me. A few weeks ago I went to Door County with my friends for the Door County Half Marathon, which is an awesome race, that I did not run this year. I only teared up a little driving into the park and then enjoyed my day. I did decide I will be there in 2018. I will run those beautiful hills. If I ever stop running it needs to be on my terms. It can’t be like this. I wasn’t done. I know I can run a faster half marathon. But it’s baby steps right now. My goal is to do a 5k by the end of the summer. I know I can walk it already so I just have to see how much I can run.
I can do so much more than even a month ago. I’m at work full time now. I am not physically and mentally exhausted on a daily basis anymore. I have good days and bad days. Sometimes I still feel awful enough I need to go home and rest, but that doesn’t happen often.
I’m starting to feel like this is my body again. For a long time it didn’t even seem real, that this was happening to me, to my body. And then it wasn’t my body for so long. It was a weak, sick body. I am now waking up muscles and starting to really use them again. I finally believe that I will get my strength back. It’s going to take time, but I believe it possible.
I’m trying really hard to not think about my cancer diagnosis all the time and it’s getting easier day by day, but I can’t forget it and I can act like it didn’t happen because it did. I think about things differently now because there is now way not to. I have more good days than bad days and intend to keep it that way.
On Wednesday April 19th I received the best news in the last 9 months: CLEAN SCANS! No evidence of disease. My totally horrible, invasive surgery and recovery were worth it. I’ve never seen my doctor looks so happy. I choked back tears as he gave me the results and then spent most of the day in tears. I was so nervous going in for this appointment. I was terrified of more chemo or another surgery. After the elation my fears have risen back up. My scans might not be clear in another 3 months, 6 months, 5 years or 10 years, but I can not dwell on that. I think this is why my surgeon told me to live my life and not think about the cancer diagnosis.
And live my life is what I plan to do. It started with drinking champagne four, no five, days in a row. It started with a giant sigh of relief. I got together with friends. I took my parents to dinner as a thank you for something I will never truly be able to thank them for. I joined a friend for her son’s soccer game. I walked around the entirety of my park for the first time since fall. I’m going to Door County with my friends even though I won’t be running the half marathon. I’m going to Madison. I’m finally going to Italy, after two cancelled trips, to visit my brother, sister-in-law and baby niece. I’m going to Portland for a wedding. I’m going to enjoy my summer. There will be grilling, kayaking, swimming, fires and even baseball games.
There are not enough words to express my gratitude to everyone who has supported me through this: friends, family, internet friends, high school and college friends I hadn’t spoken to in years, friends of friends. Thank you. Thank you from the bottom of my heart.
It’s truth time. It’s easy to write posts about the good things and the progress I’m making. It’s fun to write about having fun with friends. It’s also only a small fraction of my time. I still spend a lot of time on my couch. I spend a lot of time wondering what the hell happened to my life? I used to be busy all the time. By choice. I filled my life with friends and family and exercise and travel. I miss all of this.
As most of you know I’m an independent person. Often stubborn as well. My doctor called me fiercely independent which I really think meant stubborn pain in the ass. This translates to me wanting to be able to do everything for myself, but I can’t. I literally cannot do it all. I end up curled up in a ball upset about it. People keep offering to help, but I don’t know what to tell someone. I’m never going to be the person to ask for help. I don’t even ask my parents for help until I’m so upset I call my mom in tears over laundry or dinner or one of my cats annoying me.
I don’t want to be at work. I really thought I would want to be back. I mean, it’s great to see everyone and use my brain, but I don’t want to be there. This isn’t the normal I don’t want to go to work. This isn’t I hate my job and I don’t want to go. It’s something different that I can’t exactly pinpoint. I guess I can ask for help sometimes. I’m not driving myself to and from work, my parents are. I waste so much energy driving myself, it’s not worth it. I wish I didn’t have to work. Or didn’t have to work full-time. But I like my house and my car and eating.
I still have a terrible relationship with food. I hate that more than anything. I used to love food. I tolerate food now. I’m still not able to eat a normal amount. I’m still underweight. I still don’t want to eat half the time. I miss being able to eat like a normal person. It is improving, just not very quickly.
I miss running. This isn’t something I have been missing the whole time, but it’s spring and people are racing and I want that feeling. I legitimately miss running for two hours. Instead I’m walking. Not far. Just walking. I got excited Saturday when it was nice out and I went for my longest walk yet, but then later got upset over how stupid short it was and the fact that I got excited about it.
I don’t write this all just to whine and bitch. This is the reality of what I a going through. I never wanted to believe the doctor when he said it could take 3-6 months to get back to my “normal” life. I’m not at three months yet. I’m trying to be patient, but I’m not.
TL:DR What the hell happened to my life? I’m making progress but I’m impatient.