I feel like I’m back in the land of the unknown. I had my last (hopefully) chemo on the 15th and am feeling pretty good right now. I rested a lot this weekend and was reminded I don’t have the energy of a normal person when I got exhausted decorating a gingerbread house and cookies, but I’m glad I did it. The positives of no chemo over the holidays is maybe I will enjoy wine (it doesn’t taste like wine to me these days) and I get to feel good and will hopefully have energy to enjoy everything. My house will soon be full of family and I’m pretty excited to have Christmas with more than just my parents. This is the first time in five years I get my brother home. In addition to him we get to celebrate Anamaya’s first Christmas with all of her family. Soon we will have my brother’s in-laws arriving from Italy. Let’s hope the snow stays around so they can have a white Christmas.
As far as side effects and what not, my sleep schedule is bothering me a lot right now. I am someone who normally sleeps through the night and am waking up 3-4 times a night. It’s driving me crazy. Over the counter sleeping pills and melatonin aren’t doing anything and I don’t really want anything stronger. So if you want to chat with someone at 4:00am I’m your girl right now. I’m usually wide awake then. It’s super fun.
I want to take a moment to recognize the amazing nursing staff at the MCW/Froedert Cancer Center. They are amazing people and have made this whole process smoother than I can imagine. These are a special group of nurses who work on the oncology unit and I couldn’t be happier with them. As I’ve mentioned before I love my care team in general, but these nurses make a long chemo day better.
I am having scans, a CT and MRI, on the 27th and then meeting with my doctors. I am hoping that means we can schedule my next surgery. I don’t really know what it means though. As of right now it is my understanding that I am having surgery sometime in January. While I know this will be an invasive surgery I am ready for it. I’m tired of chemo and I want to move forward. I will most likely be on leave from work for 6-8 weeks so am compiling lists of shows to binge watch. I already have piles of books to read.
I didn’t want this to become my cancer blog, but that is my life right now and I know after letting everyone know what is going on there are a lot of questions. I still can’t get over the wonderful, supportive, outpouring of support I have received. Thank you so much to everyone.
To fill people in a bit more I am willing to answer questions and give more information than I did in my initial post. I may not be willing to answer all of them but I’ll try.
Every day really is different. Some days I feel great, almost normal, other days I am stuck on the couch and barely move.
In August I went to see my primary care doctor about some pretty non descript symptoms, basically being a woman. She took what I had to say seriously and ordered ultra sounds right away. I ended up meeting a gynecologic oncologist a week later and immediately had surgery scheduled. We thought it was a possibly malignant ovarian cyst. My appendix and ovaries were removed during the initial surgery. There was so much disease on my ovaries no fertility could be saved. It was when I woke up from surgery I first heard the words”we found cancer”. I had no idea how to respond. It took me awhile to go from “they found cancer” to “I have cancer”. Those words are really different and I had to get there on my own.
Because I’m young and in good health (other than cancer) they started chemo only 4 weeks after surgery. I was able to go to New York for a friend’s wedding and to meet my wonderful niece at just 3.5 weeks post surgery. I had three doctors sign off on it. As soon as we got back after Labor Day I had a port put in and started chemo. I really had no idea what to expect. Chemo days are a lot of waiting around and a lot of sitting around. They start with labs, which always take forever and I don’t even understand why they take appointments. I then meet with my medical oncologist and the PA. These are wonderful people who listen to me and talk to me, not at me. After that I have to go check in to the Day Hospital where they don’t even mix your chemo until you check in so more waiting. We learned really quick to bring our own food as the “Bistro” in the Cancer Center makes horrible food. Once they finally call me back I get pre-drugs and then a 2 hour chemo drip. I then get another drug and finally they connect me to a pump that I am stuck with for 46 hours for a slow dose drug. There are days I spend more time at the Cancer Center than I would at my desk. Chemo happens every two weeks so I do get time off from it all. My side effects have mostly been fatigue and neuropathy in my hands and throat. I’m getting pretty used to drinking room temperature water and hot beverages.
I’ve now been through 7 rounds of chemo. They changed the drug mix after 5. I do not like the new drug as it makes me a lot more tired and non-functional. I thankfully work with some of the best people ever and am able to work from home as needed. I don’t know what I would do without my team that is covering all kinds of things for me. I don’t even know how to thank them. I have one more round of chemo scheduled on December 15th and I am oh so hopeful that is it and I get a break for the holidays.
I have started losing my hair which I’m not handling well. I was told I wouldn’t and I’ve never had thin hair in my life. I hate this so much. I want my hair back. I want my curls back.
As I said before this is really a day by day thing. I never know how I’m going to feel and while trying to hold on to as normal of a life as I can I make mostly tentative plans. Thankfully my friends are amazing and never question anything. They have driven me all over, taken me to brunch, taken me to the doctor. I am in awe of how wonderful you have all been and how supportive you are. Thank you.
Today is a rough day so I’m on my couch, but who knows what tomorrow brings.
Anamaya Sturgess-Hill was born on 7/6/16. I became an aunt this year and while aware I am very biased, she is the most wonderful baby ever. I have loved watching my brother and sister-in-law become parents. I owe them the world for bringing the baby on three transatlantic flights so I have seen all of them a bunch this fall. She brings so much joy into my life and we’ve all already agreed I will probably never say no to her.
2016 election. Enough said.
My whole life was turned upside-down in August. I have appendiceal cancer. I went in for surgery on August 10th to have an ovarian cyst removed and not only was that malignant they found a tumor on my appendix. Four weeks later I started chemotherapy and have been undergoing treatments every two weeks since September. At this point I have one more treatment left before they do more scans and schedule a second surgery in mid to late January.
Appendiceal cancer is extremely rare and even more so in a 31-year-old. They see maybe 1000 cases a year and in comparison, see 140,000 colorectal cancers. I have an incredible care team that I 100% trust.
A lot of you know this and I couldn’t be more grateful for the outpouring of love and support from my friends and family.
I decided it was finally time to go more public as it has taken over my life, but I will not allow it to define me. I am not cancer. I am not a cause. It is something I’m going through. And something I will get past.