Ovarian Cancer Grad- Amy
Name: Amy Buckenmayer
Age at Enrollment: 42
Major: Stage IIIC Ovarian Cancer (BRCA1 positive)
What were the primary symptoms you experienced prior to diagnosis? One day I got extremely bloated and it never went away. I was used to getting bloated with stress and food, so I didn’t think much of it at first. But after a few days, it took me two doctor’s appointments in two weeks, then waiting on an ultrasound to find out my bloating was ascites, and I had large masses on each ovary. Hindsight being 20/20 - I had a bout of bad bloating about a year prior, but it resolved itself. My heartburn was worse than normal, but I chalked that up to coffee. I started to lose my appetite and had bladder control issues and severe coughing a few weeks before the bloating, but I thought that was all from a medication change. They call this disease silent for a reason.
What symptom(s) lead you to go to the doctor? The massive bloating I knew in my heart was ascites and likely the big O.C. (what I call ovarian cancer).
Courses Completed: I had a total hysterectomy and debulking. They gut you like a fish and go scouring for cancer. I lost my cervix in the process, too. Normally they try and save it, but because of my tumors that was virtually impossible. Luckily my debulking was optimal and they got everything. I started chemo within a month of a surgery that takes 6-8 weeks to recover from if it is a normal hysterectomy (not debulking). I had six rounds of IV Abraxane (allergic to Taxol) and four rounds of IP Cisplatin (chemo directly into the abdomen). My treatments were concurrent, and believe what they tell you - IP is no joke, it’s a tough treatment and there is a reason why 40% of women can’t complete it. I refused to not complete it. It was awful, but I survived it.
What has been your biggest struggle since your diagnosis? Oh so many things, LOL. My relationship was falling apart right before I was diagnosed (there was certainly an emotional affair going on, possibly more). He was pretty absent throughout treatment, and then finally pulled the plug on our engagement once my CT came back clear. That has been a rough road. Chemo brain has me in tears on some days - just so hard to concentrate. Sometimes the fatigue sets in if I do too much, and I need a day to recover. I also worry about recurrence, but I tell myself, nope, this is it. I am going to be okay. By far the hardest thing beyond the loss of my relationships has been figuring out the “new normal.” I have one foot still stuck in my past life and one stuck in my new life and second chance. I feel confused and lost a lot, but I am getting there. Each day is a new journey into what lies ahead, and that is exciting. Life can now become what I make of it. I feel reborn.
What was your hardest moment (or moments) and how did you you get through it/them? No one warns you that after a hysterectomy anxiety and heart palpitations from surgical menopause are brutal. My anxiety was the single most (almost) insurmountable thing to handle, and the palpitations from menopause and low hemoglobin levels were uncomfortable and created even more agonizing anxiety on top of everything else. It took four months to get my anxiety under control to the point I could handle a major panic attack. But, there were days in those four months when I was frozen; I just could not leave the house. I relied heavily on my small support system to get me through and lots and lots of deep breathing and a strict course of sedative meds. Mind you, I had an anxiety disorder before cancer and surgery and chemo, so that didn’t help! Chemo was very rough, my week one (of the three week treatment cycles) was difficult to endure. IP chemo is really rough. The side effects are worse than IV chemo, and it was days of hydration after each treatment. However, my anxiety was far worse than anything else. Even surviving IP. For the IP I got into a routine, knew what to expect and toward the end ditched the narcotics and anti-nausea drugs (neither of which were working) for medical marijuana, which took the edge off at least. Getting the anxiety under control was just being very vocal with every doc, therapist, social worker and psychiatrist until they got it right. And lots of cognitive therapy and Reiki! One other things that has been tough that not a lot of cancer survivors talk about is when people talk in years - like “in five years I will…” or “when we’re 60…” I no longer operate like that. I tend to go right to “well, I might not be here in five years.” It’s something that I think will get easier with time, but won’t ever go away. Cancer forces you to face your mortality, and especially after ovarian, that feeling is heightened. However, it’s important to look past the statistics, talk to long-term survivors (they are out there), and just live life as fully as possible. I also wound up getting a bad cold during my first round of treatment, and went neutropenic (low white blood cell count) at the same time. It was incredibly unpleasant, but I made it through. That gave me hope that my body knew what to do with what it was being dealt.
What has been your biggest accomplishment since your diagnosis? Getting back to baseline. I was truly surprised how quickly I recovered to get to the gym and start working out again. I thought with my anxiety and tachycardia (fast heart rate - likely menopause, anxiety and low blood levels) and the terrible fatigue, it would take me awhile to get my energy back, but I was at the gym four weeks after my last infusion (and trust me, I was not a gym rat or in shape before my treatment!). After chemo, my panic and heart rate normalized and now I am killing it at the gym, just three months past my last treatment. I learned throughout the entire experience to push myself through the pain and fatigue as much as I could, and I believe that prepared me to ramp up quickly after treatment was done. I am also slowly trying to start my own business after working for other people, and I know everything is baby steps now, and that’s okay. Cancer taught me quite clearly that nothing is guaranteed and finding your joy and chasing your dreams should be priority numero uno.
What advice would you give to someone who is newly diagnosed? What advice would you tell them to ignore? STAY OFF THE INTERNET. I accidentally stumbled on my recurrence and survival numbers and I cried for hours. But, then I said, “No way, not me.” I pretty much kept my head in the sand with regard to survival and recurrence rates when it came to talking to my treatment team. I had already known ovarian is a tough little cookie that likes to come back, and that survival rates aren’t nearly as high as other cancers, but I wanted to just ignore it. I also learned there are long-term survivors out there; they are just not as overt as say those in the breast cancer community. There is a light at the end of this tunnel, even though it is really dark for a while. I reached out to friends who had breast cancer and looked for young women who had been diagnosed with ovarian cancer. It was easier than support groups on Facebook or in the community. I didn’t want to hear about the cancer coming back, I wanted to ask a lot of “is this normal?” during treatment. And the emotional roller coaster was much easier to handle after speaking with people who had been through it, but were going to be straightforward and uplifting, not the O.C. doom and gloom that I found all over support groups. The one thing I would want anyone to understand when they are diagnosed is that your journey is your journey and that is okay. Not everyone has chemo parties surrounded by balloons and friends. I didn’t. It was me and my mom. My fiancé at the time wasn’t even there (though he did stay with me for a couple days after IP chemo when I felt my worst). It is also okay not to feel strong and all “I got this. I am a warrior.” I kicked and cried and freaked out throughout my chemo, but I feel great now. I look back and recognize my strength now. Don’t think your experience has to look like what you see on social media. It’s okay if no one throws you a party, or if you want to just sleep alone. Do whatever works for you. And it’s true - be prepared to have people you thought would be there to be ghosts, and others whom you never expected to show up. And listen to your treatment team. They got you.
How did your family and friends respond? Shock, mostly. A few people close to me knew in those weeks leading up to diagnosis something was really wrong. Some of my family never even really acknowledged I was going through cancer treatment, and that sucked. Facebook, not to sound like a broken record, is where I found a lot of support among the friends. They kept me loaded with positivity. I had a couple of friends cook for me because making meals or even eating was such a chore during treatment. There was a lot of fear, but also a lot of matter of fact when it came to the support I got during cancer. It became like a business trip. Routine. Every fourth Monday and Tuesday was chemo. That week was every day getting hydration infusion. You just do it. However, like in any situation, no one expected me to get sick. My mom had a really hard time, and she was my primary caregiver. Even now I think she’s afraid I will break if I leave the nest.
Are there any bad platitudes/bad recommendations that you’ve heard from other people regarding your cancer diagnosis? Luckily only one person told me chemo was the wrong way to go and that I should do alternative healing instead. And no one said anything about it being God’s will or giving me what I can handle or really bad things people say to people who get cancer. What people did say to me a lot was “I know” when I would talk about my pain or struggles or frustrations, and that would make me crazy, because they didn’t know (unless they’d been through it). You could have a gaggle of people with you throughout the process, but you really go through the cancer and its treatments by yourself, and you quickly learn how tough you are and how amazing the body really is. I was fortunate, a lot of friends on Facebook really encouraged me, and it was their comments that got me through the hardest of times.
When you feel overwhelmed or anxious, what do you do? I breathe. I pray. I meditate. I do yoga. I still get Reiki every week (I strongly believe in the power of Reiki). I journal every morning. I close my door and cry and think and cry and write. But, it all comes back to deep breathing. I take a timeout and either go for a walk, meditate, do yoga or just go outside and stare into the trees and process my feelings. I have really gotten into spirituality, wellness and Eastern philosophy since being diagnosed, and it works.
What did you know about the type of cancer that you were diagnosed with prior to your diagnosis? I already knew a lot about ovarian cancer. I had worked in the cancer world for almost 10 years when I was diagnosed. Ironically, getting ovarian cancer was my greatest fear (and overcoming it means a great deal to me in terms of what is fear and how we can push past it). I knew that it was silent. I knew that it was usually found at a late stage. I knew the statistics can look grim (but I don’t go there!).
What do you wish more people knew/understood about it now? There is so little awareness about ovarian cancer, and it is a sister cancer to breast cancer. The symptoms are so vague, so that’s challenging, but my hope is that we can join forces with the breast cancer organizations and put a strong push and focus behind both female cancers. I also wish people knew there is a lot of research going into ovarian cancer so it is no longer a death sentence, it is being treated as a chronic disease. What I would also love to see is more awareness around hereditary cancers. I am BRCA1 positive. I always wanted to get tested, but my insurance wouldn’t cover it, and organizations told me I didn’t have enough breast cancer in my family (although I have breast, colon, pancreatic - all also tied to the BRCA mutation). Had I gotten tested when I wanted to, I may have avoided this whole ordeal. I would definitely have removed my lady bits, and once I am cleared, I am having a preventative mastectomy. There is absolutely no screening process for preventing ovarian cancer, cancer marker tests and transvaginal ultrasounds are not sufficient enough to catch the disease early. However, genetic testing in a woman’s teens and 20s can give them the options of what to do when to avoid being diagnosed with this horrific disease. When I read the guidelines of what doctors recommend for BRCA1, I cried. I could have prevented this in my 30s.