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My journey with stage IV ovarian cancer started last September on what was supposed to be the trip of a lifetime, a three week tour of Europe to celebrate our 30th anniversary. While still at the Paris airport on the first leg of our tip, I developed severe abdominal pain. Instead of touring France, Germany and Italy, I spent a morning in a Paris emergency room where a pelvic mass was found and put a sudden end to our trip. Over the course of the last year, I have undergone traditional chemotherapy, was enrolled in a clinical trial, had two surgeries and am currently on maintenance treatment. I am asking for your help in raising money for the National Ovarian Cancer Coalition. While on the clinical trial, I am (hopefully) benefiting from the ongoing research being done to help the countless women dealing with this cancer. One of the drugs that is part of the clinical trial has already become standard of care for first line maintenance treatment. I know that time are difficult now, but please consider even a small donation. If weather and circumstances allow, I will send out an invitation to start a walk for our home.
Please help me get the word out by sharing this message. Every dollar I raise will advance a great cause. I will update this page as time goes on.
Barb's Cancer Manifesto
I have Stage IV Ovarian Cancer (it could be fallopian tube or peritoneal origin-all treated the same) with liver, lung, and lymph node metastasis-not good-it is what it is-now, I do what I can do-battle with humor and educated decision making, with the support of my family and friends. I will not be cured. The goal is to achieve NED (no evidence of disease) and maintain that good response for a long time. NED does not mean cure. I will likely be on some sort of treatment for the rest of my life. Today cancer is being treated as a chronic disease, just like diabetes or high blood pressure… Will these diseases be cured in our lifetime? No. Can they be managed and controlled? Hell yes!!! Current treatment plan is three cycles of chemo, then surgery, then three more cycles of chemo. After that I will be on maintenance drugs for what I hope is years and years prior to cancer's ugly return.
Now on to the rules of engagement....
1. Do not feel sorry for me, pity me, or blame me for having cancer (yes, I know I should have gone to the doctor more, but no guarantee that it would have been found sooner (I had no symptoms prior to this incident)-it is what it is-I'll do what I can do. Please offer support, friendship and humor.
2. Treatment decisions are mine and mine alone. When the side effects of treatment outweigh the potential benefits, I will make the decision about the next steps. (Do not blame or pressure me or my family for not being more aggressive-my dad experienced this when my mom was sick). I will get through this initial phase of treatment. After years and years of chemo, that mindset may change.
3. I plan to be as active and independent as I possibly can. Do not be offended if I decline help while I'm able to do things for myself. I know there will come a time when I need more help, I'll save the favors for then... feel free to offer help, but don't be hurt if it's declined.
4. I am not religious. Feel free to pray, but don't inundate me with religion. You will not convert me now.
5. Text. Call. Visit. Don't worry; I'll let you know when we are done... When I'm resting, my phone is on “do not disturb”. Responses are not guaranteed. Please do not be offended, I know I will have days that I won't want to be bothered.
6. Remember that I am bilingual, with sarcasm being my native tongue and a little English thrown in. Morbid humor is my specialty. I need to laugh to cope. Some will find my humor offensive-too bad-my tumor, my rules! I'd rather laugh than cry. I know there will be tears, but let's try to keep them to a minimum. Cancer sucks! Serious business! But I will laugh!
7. The purpose of this and future emails is to receive updates from the horse's mouth (I am the horse). This is my information to share. Do not forward these emails. If someone wants to receive my email updates, let me know, I will add them to the list. Hopefully that will leave you with few questions to ask. If you do have questions, primary communication will be via text messages to either myself, Karl, Eric, or Julie. (I'm sure you are all smart enough to know who your contact person should be...) Be kind and patient with these people (they have a lot going on too), if you are not, you will have to deal with me. My cell number is 847-340-7495 if you send a text and we haven't texted before, please include your name.
8. Unsolicited advice is not welcome. I am an oncology nurse and have counseled hundreds of patients on symptom management. My patients have taught me more about oncology than I have ever read in a book or article. Those patients are the reason that I am able to deal with this as well as I have. In addition to that, I have not only my official doctor and nurses, but more importantly, the team that I value and trust at Dreyer. You can ask if I need help managing a problem, but if I say no, that is the end of the conversation.
9. I will live a normal life. I am not fragile. I will kick cancer's ass for as long as I can, dammit!