Sunday, March 29, 2015

It's spring, and Easter is in 1 week. That brings so many symbols of hope and new beginnings. The snow is melting, it's getting warmer so we can head outside again. I have my next scheduled in a couple months. There is some anxiety about what it will show, but it is also a marking point. When I start to worry, I can remind myself that the last scan looked good. Every clean scan means more time. Someday we'll see this cancer again, but right now life is good.

I'm experimenting with water colors and stamps this week. Sometimes i draw the grid and create random blocks to use as backgrounds

An image can be rubber stamped onto the background, or you can do the reverse. Stayzon Ink is waterproof, so you can stamp the image first. Give the ink a minute to dry, then paint over it with watercolors. Sometimes I like the way it looks bleeding off the edge, other times more neat and clean.

I use these in atc's, and in greeting cards. To make embellishments ahead,  I stamp a variety of birds, flowers and butterflies onto white paper with black ink, leaving at least an inch in between.  Paint over, let dry, and cut out! The way you cut them out also adds interest. On the flower, I used a circle punch. The larger butterfly and the bird are torn for a rough edge. The others are cut close with manicure scissors. These are tucked away in a clear plastic bag till I'm ready to use them. 

The Layering, gives the finished project more complexity. The rectangular cut, on patterned paper has a more formal polished look. 

The torn edges, on a watercolor background is more casual, soft romantic. The right quote or verse will finish it off. 

I'm planning to have a mailing address for the atcs4acc project by the end of this week. I'm also planning to give my testimony at my church the beginning of May. I would love to have some drawing cards collected to display along with information about ACCRF, so start working on them, final details coming soon!


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

ROAR atc

     Sometimes people tell me how strong I am to deal with this cancer, but I don't think anyone starts out that way. It's like the cowardly Lion in the 'wizard of Oz'. At the beginning you are terrified and you feel powerless, but you face it anyway to protect the people you love, and you grow stronger over time. With many types of cancer, 5 years is the magic number where you are cured and the checkups stop. Because ACC grows slowly, there is no magic number. My doctors didn't know how long they would need to follow me, so the checkups continue year after year.

      At first it was hard, I was convinced it would be back, but it didn't and life moved on. The CT scan and broncs became about as scary as a teeth cleaning. It was nothing, until after 9 years it became something. The scan showed a metastasis in my left lung. So now we start over again, scans every 3 to 4 months. There is no chemotherapy for this, so we can't go after those microscopic cells we know at there, until they grow large enough to become tumors. This is part of my life, but it doesn't have to take over. The visible metastasis was treated with cyberknife. it shrunk, so now there is only a scar within my lung. I'm having CT scans every 3-4 months, and I'm trying to get back to normal life. I have a husband and kids who need me, and I need them. They give me something to focus on today instead of worrying about the future.

     I'm going to be adding artist trading cards (ATCs) of my own for this project, as well as cards that i collect. The standard baseball card size, makes them fun to do without a lot of commitment. I've also found it a good way to try ideas that are different from my usual style. i keep a bunch of blank cards in my purse for when when stuck waiting at the doctors office, or picking up kids and have the time to doodle.  you can buy precut cards, but with a paper cutter, its easy to cut them yourself. For this one, I drew a grid on 8 1/2 by 11 watercolor paper, then randomly painted the individual squares.

After they dried, I cut them apart, and tucked them into an envelope until I was ready to use them.  When I was ready to start my lion card,  I flipped through my predone backgrounds, and this one just fit with the profile of a lion. so i sketched it out in pencil till i was happy with it, then traced over it in black ink.,

 I did a second one facing forward in the same technique. which one should go into the project?

Friday, March 13, 2015

"Hope" Atc Collage-

This was the first collaborative ATC project I did. About a year ago, I came up with the idea of creating an art piece for our church.  I wanted an activity that anyone could contribute to whether they considered themselves an artist or not. 

So this is the fun part, there are a few rules. The cards are 2 1/2 inches by 3 1/2 inches, like a baseball card.  Usually, 2 artists would agree to trade either cards they have already finished, or to create cards and a specific theme and then exchange. For this, all the cards were organized into a frame together and displayed at our church.

The overall theme was HOPE. Some were done at a ladies overnighter, some in a kids sunday school class, and some independantly.  They are done in a variety of materials, scrapbook paper, watercolors, stickers, stamps, colored pencils, digital art...Some contain a word, poetry, scripture, quotes, lyrics, or just an image.  This frame holds 26 cards, and was about 12 inches by 18 inches. 

The individuality of each card is what makes it so interesting to look at. For the ATCS4ACC project, I would like to work with a theme of warrior/ survivor/Live. it is open to interperitation, but it should be positive, and appropriate for a family setting. 

Thursday, March 12, 2015

Introduction to ATC's for ACC

      Each person's experience with ACC is as individual as they are. It can start in the saliva glands, the trachea, the lungs, the breast and other locations, but under the microscope it's all ACC (adenoid cystic carcinoma). It usually grows slowly, but can also have periods of rapid growth. It can recur in the original location, or it can metastasize to distant spots after years of remission. It can turn up in teens, young adults, or middle age adults. Not many people have it, they are often misdiagnosed, and they are spread all over the world. it makes research very difficult.

There are a few different online groups, and my plan is to collect atc cards from survivors/ warriors with this disease, and from family members and caregivers. I'd like them to be hopeful and encouraging, representing each persons unique strength. an atc card is the size of a baseball card. 2 1/2  inches by 3 1/2 inches. They are decorated with paint, colored pencils, paper, stickers, photos, and media that fits the size requirement. They might feature a name, a word, a quote, a scripture or just an image.  After they are collected, the cards will be arranged into a collage and framed.

The finished piece will then be sold to raise money for research. I'm still learning about that part, whether a silent auction at an event would be better, or an online auction. If there are enough people donating cards, I would love to do both. As I receive cards I will post them here and on facebook. At some point in the future, I may use the images in a calendar with permission of the artists.

Anyone who would like to donate a card, or has a question can email me at