Wednesday, March 18, 2015

This is the not so fun part. I have ACC.

Spring, 2004
     I did took antibiotics for bronchitus, and it didn't fully improve. I was still wheezing for weeks afterward, so i started taking an inhaler. I had asthma as a child, so it was possible that it was reacurring. My breathing did improve, but looking back this was the first symptoms of ACC.

August, 2004

     I was 32, never smoked, and pregnant with my son. Soon after we found out we were pregnant, I started getting out of breath doing normal stuff. I was also caring for our 2 year old triplets, so we thought this pregnancy was just harder. One morning, I started coughing, and vomited blood into the sink. I immediatly went to my family doctor. Chest xrays didn't show anything, and further testing wasn't safe for the baby. I started antibiotics for bronchitus, and it cleared up. this happened 3 seperate times during my pregnancy. Every time there was no concerns about the chest xray. Eventually, I started coughing all the time. I used a prescription cough medicine when it was really bad.  I had a breathing study done and they thought the baby was crowding my lungs.

January 8, 2005

 My breathing continued to get worse until I collapsed in the emergency room coughing up blood and having an asthma attack, 7 months pregnant. The xray showed I had pneumonia and my right lung was collapsed. Even with oxygen, I was struggling to breathe. A ct scan showed a mass where the trachea met the right lung , completely blocking the airway. They asked if I remembered swallowing something.  The doctors told my husband it was a blood clot from the pneumonia. They put me on a ventilator, and wanted to do a broncoscopy to remove it as well as the fluid in my lung. What they found, was actually a golfball sized tumor. The doctors were sure it was benign and it was rare for any tumors to grow in the airways, and I had no risk factors for lung cancer.

January 10, 2005

I have very patchy memories of the next couple of days. I was still on the ventilator, and getting iv antibiotics, as well as steroids for 2 days to help my sons lungs mature. I was under general anesthetic when he was delivered by c-section, 10 weeks premature. He weighed 3lbs 6 oz.  He went straight to the NICU.  I was in the ICU, so my husband was going back and forth and brought me a picture of our son. My doctors were making plans to transfer me to the Mayo clinic to have the tumor removed and my airway reconstructed.

January 12, 2005,

I improved enough breathe on my own with oxygen, and was able to go down to the NICU to meet my son, Ray. He was so fragile, that they hadn't bathed him, and he also needed a ventilator, but they let me hold him. That day the biopsy came back and it wasn't benign. It was this rare cancer, adenoid cystic carcinoma, ACC. All the plans changed.

They needed to transfer me to the IU med center, no knowing what they could do for me there. Ray would stay in Fort Wayne.

January 13, 2005

I held Ray again before being transfered by ambulance. My husband met me in the room, and we met the surgeon for the first time. He told us they were scheduling me for a right pneumonectomy the next morning. They would remove the connection between the 2 lungs, as well as part of the trachea and all of the right lung. then the trachea would be reconnected to the left lung. We were shocked. My husband didn't even know it was possible to live with one lung. We tried asking about other options, lung transplants something. The surgeon was blunt. I wasn't going to get better, and the infections had badly damaged my lung. this was our only option.

January 14, 2005

The next morning I was in surgery. I was on a vent and sedated again afterwards for the first 24 hours. I was in the hospital for 2 weeks afterwards. I had a hard time getting off of the vent again. The first time they tried removing it, my airway collapsed and i had to be reintubated. Later, I was off briefly before fluid started accumulating in my remainging lung. I was intubated 5 times, and was schedulted for a tracheotomy. Fortunatly, I was able to come off the vent for good the day it was scheduled.

january 30, 2005

At that point, I was doing so much better. My husband and I were walking the halls, and the nurses commented "there she goes again". We hadn't know what to expect, so i didn't realize that they were impressed that I was up and around so quickly. The problem I still had was swallowing. My gag reflex wasn't functioning, and if I swallowed something it could go into my lung without me coughing it up. I was able to go home with a pic line leading into the artery near my collarbone. I would hook up to a nutrition pump each night, and i worked with a speech therapist to strengthen my swallow. after being home for 2 weeks, i had another swallow study and passed it.

March 5, 2005

After the surgery, they found the margins weren't clean. When they looked at the edges of removed portion, there were still microscopic cancer cells. They couldn't remove more of the trachea, so they recommended 5 weeks of traditional radiation. I did this in fort wayne, so it wasn't so far from home. my son had been released from the NICU, and we had support at home from family and our church during this time as well. During the treatment, I was fatigued, and I had burns in the esophagus that made swallowing painful. It was a couple months before that felt normal again.

Monitoring phase

I had a ct scan, and a bronchocopi 3 months after the treatment, and there was no sign of cancer. After that scans were done every 6 months, then every year. Over time, it became something I just did, like a dental cleaning. I wasn't afraid of it coming back, because I had been in remission for so long. My kids were growing up, and I was working, life was moving on.

Spring, 2012

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