I turned 40 this year, and "celebrated" the milestone by scheduling my first mammogram. Yeah, me!
On October 10th, I went in for what I thought was going to be my first, routine mammogram. The following day, I attended a woman's retreat, and as I was relaying my experience at the dinner table, I distinctly recall one of the older women having a concerned look. On Saturday, she disclosed that she herself was a 4-year breast cancer survivor.
On October 14th, my doctor's office called to confirm what I already knew. The mammogram was inconclusive and "may show" some abnormal findings. For the next five days, I agonized over what it could possibly mean. I felt things I had never felt before, despite consistent self-checks over the years. I had a panic attack at the mall and called my husband to come and pick me up.
On October 16th, I met with my general PCP (a previously scheduled appointment) to discuss some general gastro-intestinal issues I'd been having for about a year, as well as some less than stellar cholesterol results. On that date, I was diagnosed with irritable bowel syndrome (IBS, which is not a diagnosis until everything else has been ruled out, but I only know that NOW) and prescribed something to take for "flare ups." She also recommended keeping a food journal to try to identify my "trigger foods" and starting a FODMAPS diet. That should also help with my cholesterol, she said.
On October 18th, I had a second mammogram and a breast ultrasound, which proved cysts in both breasts (non-cancerous), but the damage was already done. I had already talked myself into having breast cancer and dying before Christmas.
NOW I know that almost 50% of women are called back in following their first appointment to establish what is termed a "baseline." NOW I know that 3D mammograms are recommended, especially women who are establishing their baseline. NOW I know that due to the strict screening guidelines, 90% of breast cancers are completely curable. NOW I know.
During all of this, I was taking my "flare up" medication because every day was the same: constantly uncomfortable and sometimes painful, distention and bloating, and a complete loss of appetite. On October 27th, I went to bed with severe stomach pain, woke up in the middle of the night, had a panic attack, and drove myself to the ER. The nurse looked at me across the registration desk, sent me home, and told me to call my PCP in the morning.
On October 28th, I was back with my PCP. She prescribed me an anti-anxiety medicine, diagnosed me at this point with gastritis and gave me a PPI to reduce the stomach acid that was exacerbating my lifelong history with acid reflux and night coughing, and causing a tremendous amount of heartburn and indigestion. She instructed me to schedule an appointment with a psychiatrist.
I called EIGHT psychiatrists in my network, and the earliest appointment I could schedule was December 30th! I started taking my anti-depressant that night before bed, as recommended due to possible drowsiness, and for the next three nights, I experienced night sweats, hand and feet numbness, dry mouth, and night terrors. I reached out to my PCP again, who confirmed that I was having an adverse reaction to the medication and prescribed another type of anti-depressant. That entire week, I was in an absolute fog, trying to function at work and doing nothing else but lying in the bed, watching television.
On November 1st, I had another panic attack. I got through the weekend, but by Tuesday morning, my husband was also beside himself with what to do with me. I had barely eaten in 10 days. I drove myself again to my PCP on November 5th. This time, she didn't even let me talk. She told me they had done everything they could for me and everything I had asked of them. In other words, get out of her office. I told her to give me a referral for a Gastroenterologist and didn't leave the office until the referral had been sent in the system. She recommended Melatonin for my insomnia.
After doing some research on the new anti-depressant I was prescribed, I decided to change my night-time administration to the morning. I didn't want to bother my PCP yet again.
On November 11th, at the recommendation of my OB/GYN, I met with a breast specialist to review my benign mammography results. She walked in, hugged me, and told me to go and grab a cocktail.
On November 15th, I started bleeding. I spent a weekend with one of my dearest friends, who hugged me, fed me, and loved on me. It was truly a highlight of the past two tumultuous months.
On November 18th, I went to my OB/GYN for an IUD removal. Due to the bleeding, they also conducted a transvaginal ultrasound which showed a 3cm cyst on my ovarian stalk.
On November 20th, I finally met with a GI specialist. He listened to every word I said and immediately ordered an endoscopy and colonoscopy. He told me to enjoy every day of my upcoming trip to Mexico with my husband.
While in Mexico, I ate some days and didn't eat other days. Every morning was an incredible struggle to get out of bed. One day, I didn't get up until almost 5pm. On the last night in Mexico, I developed a migraine, a severe cold, and spent the next 24 hours throwing up. On the plane ride home, I burst my right ear drum and couldn't hear out of it for two days. NOW I know not to fly when you have a cold.
In the wee hours of the morning of November 30th, my husband and I drove again to the ER. The doctor said I looked fine to him and asked what they could do for me. I told him I needed an IV for fluid because I was dehydrated, and they gave me an additional dose of the PPI I was already on. Then they sent me home and told me to wait for my GI procedures.
On December 3rd, I finally had an endoscopy. It showed I have a medium-sized hiatal hernia and gastritis. Results from the stomach biopsy should be available later this week, but surgery has been recommended to improve my quality of life.
On December 4th, the colonoscopy showed no cancer (thank god!) but proved spastic colon consistent with IBS.
On October 14th, I weighed 124 pounds. When I went in for my colonoscopy, I weighed 114 pounds. I had lost 10 pounds in less than 2 months. That's 9% of my body weight. I've been a moderately active person my entire life, but my energy level for the past 6-8 weeks has allowed little else than walking from my car to my office desk and to my bed.
NOW I know that my story is one of thousands, perhaps millions. NOW I know how incredibly broken our health care system is; how they don't really want you to get better because then they can't prescribe more meds or more follow-up appointments. NOW I know how vitally important it is to advocate for your own health. NOW I know to fight the insurance companies every step of the way when they want to charge you for procedures previously designated for screening purposes. NOW I know how it feels to truly not want to get out of bed.
I'm one of the lucky ones. Though IBS isn't curable, I hope to find some ways to better manage the symptoms. I hope we identify what's causing the gastritis and can put an end to that. And I hope if surgery is the best answer, that I'm in good hands. But most importantly, NOW I know (though I always knew) how blessed I am by the love and support I have in my life.
