Ch.2 Getting Correct Diagnosis in a Band-Aid World

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I realize many cancers and diseases are not easy to diagnose and I’m telling my diagnosis story through my experience so my children, family, and friends can think about my situation if they ever need an example of “Trust Your Instincts”, “Be Your Own Advocate”, “Do not be intimidated nor allow your Doctor to belittle your concerns”, and most importantly…“Keep doctor shopping until you find one that genuinely cares and feels as concerned to find answers for you, He/She will make the difference”

I just want to say first, I love my doctors (now) and appreciate the amount of time and dedication given to saving and making lives better. Looking back, I see clearly that my previous primary care doctor was a good doctor, he just had a “Band-Aid” approach to everything that bothered me. I had my regular appointments and bloodwork like clockwork for years and when I started having symptom after symptom he had a medication for that or a specialized doctor for that…independently, everything got a temporary and sometimes unnecessary fix. But my intuition knew that something was wrong, and my body was telling me hey lady you are out of balance. When a patient otherwise healthy presents with multiple symptoms I wish they could do a head to toe body scan and put our fears at ease, but I’m sure things are done according to insurance and standards of trying basic approaches and a wait and see approach….BUT if you have cancer all that waiting can be deadly.

Below are my symptoms and responses and I kept going back and going back and I just felt really sad that my doctor(s) didn’t seem as worried or concerned as me. Everyone had their own answers (band-aids) but no one looked at me as a whole and wondered why am I all the sudden having all these issues?

*I started have really painful legs after working all day on my feet. After being seen by a vein specialist, I wore compression hose for a few months and it helped but didn’t cure it. Then an ultrasound of my legs’ veins which showed the main vein in each leg was not working! The vein doctor was baffled and set me up for a surgery to have them removed. (Hind sight…had the technician looked 1 inch up to the groin area… the discovery would have been found a huge ovarian cyst on each ovary blocking the veins from functioning) I had the surgery, my veins removed, and my legs felt better.

*I started having episodes where I could feel my heart racing, just driving in the car or sitting at home, nothing prompted this and it scared me which caused me to have a rush of adrenaline which caused my heart to race faster and I thought I was having a heart attack. (In hind sight I went into full blown panic attacks due to fear of what my body was doing) After several ER visits, Testing, home monitoring, they said I was fine. I didn’t know what a panic attack was at the time and I was really worried because these episodes lasted a good hour each time. It got to the point that if I even thought about or told someone about it, it would cause one! One night I had like 4 in a row and went to the ER. I sat at my doctors office the next morning and waited for it to open. I said I don’t have an appointment but I’m not leaving here until my doctor figures this out. Something is wrong and all the tests say I’m fine. They monitored me for 3 hours and I had one while there. They could see my heart rate go crazy and my blood pressure rise. He prescribed me a blood pressure pill. I was thrilled to have an answer, a diagnosis, I filled that rx fast and took one right away. I felt so sleepy, like a zombie, but it seemed to work…until it wore off then I would have another one but not as frequent.

*I was feeling bloated and my gynecologist did the usual pap and felt my abdomen very thoroughly. Everything was fine (despite the fact I had high grade ovarian cancer with 2 cysts 5-8 cm each) I still wonder why this was not noticed? Or why my pap came back ok?

*The bloating got worse, then added constipation, and now acid reflux. I got put on Nexium and told to eat certain foods.

*Right around my 38th birthday we took a Gatlinburg weekend vacation. After a day of fun I felt really bloated and just wanted to eat at the hotel (unusual for me) I remember looking at my plate of food and only being able to take 3 bites and I was seriously full. I knew in that moment something was REALLY wrong. I mean I can eat some food! I just decided I needed to see my doctor again and get a referral for this. I never made it that far because a few nights later I was in the ER.

*Along with the bloated feeling I started having a dull pain on my left side of my stomach when I ran on my treadmill in the evenings. I was still waiting for my referral to go through but one night I woke up in excruciating pain on that left side. I couldn’t hardly move. We went to the ER and they discovered a cyst on each ovary, the one on the left had twisted and was blocking the blood flow causing pain. My gynecologist wanted me to be transported to Vanderbilt in the morning but I was in too much pain they had to do the surgery. When I woke up I found out I had a complete hysterectomy, I mean everything was gone. I was told everything went well and I should recover fine and by the way they sent some of the tissue for biopsy but it all looked great and I shouldn’t worry. For a moment I thought biopsy? What for? but soon forgot about it. I didn’t even consider cancer, that’s for old people right?

After a few checkups from the surgery everything was looking fine until my last appointment. With no notice, no warning, I was given the news the biopsy came back and I had Ovarian Cancer High Grade  Stage 1C. The doctor referred me to an oncologist in Nashville but I honestly didn’t hear a word he said after “cancer”. I was in shock, In my mind I was told you “You are going to die”  The only experience I had with cancer was you get cancer and you die a terrible death.

But, that wasn’t the worst day, the worst day was waking up one morning shortly thereafter and being able to stretch and roll around in bed. I felt good. The sun was shining through the windows and I felt healed and happy, then I remembered, I HAVE CANCER.  

 

 

 

 

2 Replies to “Ch.2 Getting Correct Diagnosis in a Band-Aid World”

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