One Year Ago

In  honor of how far I have come in a year's time, this blog entry is about me.  I have been following The Year of the Oxygen Mask Project on Facebook and felt that on this anniversary it was time to tell my story. One year ago I was fighting for my life.

My problems began winter '09-'10.  I remember lying in bed and feeling a lump in my lower abdomen.  It frightened me but I didn't tell anyone, even my husband or my parents about what I had discovered.  Barney was in Kindergarten at that time without supports.  He had a diagnosis of SPD and was seeing an OT and a Psychologist privately but was suffering in school.  His Kindergarten program was only half-day and the extended day program we had set up for him was crashing and burning, the transition between programs proving to be more than he could handle. He was only in school 2 hours and 40 minutes a day.

I knew I needed to see a doctor but couldn't figure out how to make the timing work.  To make matters worse, when we moved to this community I had quickly chosen a Pediatric practice for the boys.  With their assistance I was able to locate the best OT's and Speech Therapists in the area and make appointments for evaluations to get services up and running as quickly as possible.  OT was not a problem and we  got in, the wait list for Speech was over a year but at least we were on the list.  What I failed to do was find a Primary Care doctor for myself.

In early February Barney's half-day Kindergarten made "The Big Switcheroo" as it is fondly named.  The children who had been attending morning K switched to the afternoon and vice versa. Most kids experienced some anxiety about the change but calmed down as soon as they realized they were still in the same classroom with the same teacher and classmates. For Barney the change was excruciating and he never got over it. I ignored the lump to focus on him, not an intelligent choice, but my kid needed me so I put myself on the bottom of the list and there I stayed.

During these months, and probably for 6 moths prior, my menstrual cycle was out of whack.  My periods we coming closer and closer together and were becoming more and more painful. I bled so heavily I needed to spend day 2 and 3 of my cycle lying on the couch and very close to the bathroom. I needed to change every hour or 2  on those days so I only left the house to transport the kids, praying all the while that I would not bleed out.  I worried each month during my period that something was terribly wrong, but convinced myself during the other 3 weeks of the month that this was Peri-menopause, because I remembered my Mom having heavy periods at the same time in her life.

I lived with these incredibly dangerous periods until June when my husband found me on our bedroom floor in the middle of the night, curled into the fetal position from pain. He said he was taking me to the emergency room.  I refused but promised to call a doctor the next day.

Here's the kicker. The next morning I called the OB/Gyn practice some friends had recommended. They couldn't see me because I have an HMO and needed a referral from my primary care.  I didn't have a primary care, so I called my doctor from before we moved.  It turns out I had never been to see her so she couldn't make the referral for me.  I called the primary care practice which had been recommended and was told they were booking six months out!!! I attempted to explain to the receptionist that this was an emergency but received no sympathy.  Only current patients can be seen for emergencies. I scheduled an appointment for December.

Stupid, stupid me never asked for help.  I live in a town full of Doctors. There is an Ob/Gyn who lives on my street.  I have two  friends who's husbands are Ob/Gyn's.  I told NO ONE what was going on.  I suffered in silence as the lump in my abdomen grew, my periods continued to get worse and I waited for December to come.  In retrospect, I was damn lucky I lived that long.

December 2010:  I finally get in to see Dr. P.  She's innocently asks me, "So, what brings you to our office today?"  I sheepishly respond with something about being an Autism mom and being in Dr.'s offices all the time for my kid but never for me and that I am having a little problem. When I expand upon my problem her demeanor quickly shifts from casual friendliness to high gear professionalism. Although her voice never betrays her I can see the fear in her eyes.  For the first time I allow myself to acknowledge the severity of the situation I have placed myself in.

My new doctor feels around my abdomen and tells me my uterus is the size of someone who is five months pregnant.  She does an internal exam and calls in her nurse.  The nurse is instructed to contact a particular GYN practice and not hang up until there is a scheduled appointment for me.  "Today or tomorrow", she quickly adds. I leave the office with an appointment to see the GYN the next morning.  This is a first for me, even with Barney's diagnosis, although I felt a sense of urgency, none of the practitioners did.  This time, no one was saying anything, but I could tell this was serious.

Next day I'm in Dr.V.'s office.  She examines me and is unable to hide the panic in her voice.  She needs to get an internal ultrasound and a biopsy but she also feels I needs an emergency D&C to clean me out enough to see what is actually growing in there.  She calls the hospital to schedule an OR and quickly writes up lab slips for me to have blood work and the ultrasound.

I come home and call my parents to explain what is going on.  They tell me to let them know as soon an my surgery is scheduled and they will be there to take care of the boys while I'm in the hospital, and me post-op. Dr. V takes the first available OR and I am scheduled for surgery three days later.  I go to the hospital with a sense of relief thinking my nightmare is almost over, blissfully unaware of what Dr. V will find.

I have an enormous uterine fibroid.  It has grown both inside and outside my uterus.  While in the OR, my bleeding cannot be controlled.  I almost die on the table.   Dr. V is convinced I have aggressive uterine Cancer.  I come home weak and terrified about the "What ifs?".  For three days I am certain my death is imminent.  Then the call comes.  My fibroid is benign. I am not a religious person by nature, but I truly believe God kept me alive for my kids. I know I won't live forever, but being an Autism mom I kind of feel like I need to.

Dr.V referred me to the top Gynecological surgeon in the area, Dr.G.  He examined me a few days after my D&C.  My fibroid was too large to remove without major abdominal surgery which he wanted to avoid.  His decision was to temporarily shut off my estrogen production which was feeding the fibroid and give it time to shrink. I was prescribed medication which threw me into full blown menopause for two months.  Not fun emotionally, but no periods.  It was incredible how strong and energetic I felt when I stopped loosing so much blood every month.

One year ago today, Dr.G. removed my uterus laproscopically.  He needed to make 5 incisions instead of 3 because that fibroid was still pretty f-ing big. My scars are fading slowly, but still quite visible.  My daily reminder that I am useless to my kids if I am not healthy and strong.

I almost bled to death from an untreated benign fibroid.  Don't make the same mistake I did.  Take care of yourself because nobody is going to do it for you. Put on your oxygen mask and live.  That's what I intend to do from now on.