Tuesday, September 22, 2015

Going Digital

     I've donated 2 card collections to silent auctions this year, and I think I'm ready to start working on one to auction online. My goal is to finish it by the end mid november, and post it on ebay after Thanksgiving.  This one will have a different format. The cards I've received have been beautiful, but very few have come directly from people dealing with ACC. I think the next piece would be more powerful, and hopefully auction for a higher price if it the connection to survivors was clearer. I'm planning to list the names of the artists, and their connection to ACC on the back of the frame. Names or images could be included in the card as well.  The themes will also be more cancer specific.


I'd like to hear any suggestions for improving this project. What would make it easier for people to be involved?  Are the themes to open?  Would it be easier to send a digital image instead of a paper one? would more examples, or inprogress pictures be helpful?


Submission Date-by November 16th

Themes- survivorship, warrior, Adenoid cystic Carcinoma (ACC), cancer, courage, strength,                hope, community


Colors-red, white, grey, black, silver, other colors as accents


    I know I'm terrible with deadlines, and forgetting to mail things, but I'm good with email. Looking for inspiration, I've seen some creative graphics online. Photographs combined with Quotes. or a graphic used as an avatar, or logo.  I'd like to try creating a collage using these types of images.  I would print them as photos and then frame them, like I have my other projects. The background photo could be a person, a landscape, even a piece of artwork you've already created.  The file would need to be large enough to print clearly as a 4x6. Any text should still be legible scaled down to wallet sized photo.

     Copyrights do become a concern, so the images would need to be original work from the sender, or created using royalty free images. You could use your own photograph, or scan in a drawing. It just can't be something you found on the internet that was created by someone else. It would also be important to include a message stating that I have your permission to use the image in the collage to be auctioned for ACCRF. I'm planning to contact the artists who have created the images I've already seen to get their permission to include them.  I'm also going to contact groups that also donate to ACCRF to see if I could include their logos in the project.

contact me if you have any questions, or ideas.

jpg files can be emailed to atc4acc@gmail.com.



Wednesday, September 2, 2015

5K, 10K, step by step


     This weekend, the Kellie's Krew 5K/10K, race was held in Dunn, North Carolina. There were hundreds of runners at the start line. They've trained, and set goals for personal best times. They have this look on their faces of both excitement and determination. I'm not a runner, and I wasn't in North Carolina this weekend, but this was still an important event to me. There is this other side to these events,  private and less visible, but very important. I was suprised to see that the picture in their local paper wasn't of the runners, but of the survivors.

video

http://kellieskrewrun.com/

     The night before the race, there is a meet and greet for people affected by Adenoid Cystic Carcinoma (ACC).  Kellie's krew was founded to raise money for research and patient support.  Most of the survivors have only met each other online, and travel state to state for an event like this. We are too few, and too far spread. Seeing pictures on facebook, is an encouragement to those of us who couldn't make the trip.  It's a reminder that we aren't alone in this, and that the need for a cure does matter.  I've attended Relay for Life for the American Cancer Society for years, and found it to be an encouraging event. I was disappointed to learn that the organization doesn't give financial support to research for ACC.  According to the,, it doesn't affect enough people.  Research is being funded by.
 families who have created their own organizations to fight back.

      September 11th, the Attack ACC 5k is being held in Illinois. Last year I wasn't sure what to expect when my husband and I decided to make the drive.  I found a group where I felt understood. I had several conversations that would have felt too personal in another setting. Beyond the cancer and the treatments, there is a social component to this.  The side effects can be isolating.  Beyond the way you look in the mirror, there can also be changes to the way you eat and speak. These may be temporary or permanent.  Sharing a meal is a huge part of family and community life. It's difficult to take part in that when you cannot taste, chew, or possibly swallow the food.  It's hard to date when you can't do 'dinner' and a movie.

     It's hard to function in this world when you literally have no voice. Think about how quickly you recognize your partner's voice on the phone, or your child's cry from another room.  It's hard to be heard in a crowd when you can only produce a scratchy whisper.  If your vocal cords are affected, that loss of your voice can be permanent. there are techniques that can help, but it's not a natural voice. The back and forth flow of a conversation is filled with pauses, and the tone of voice isn't there. It takes courage to go out into the world and speak for yourself anyway. In this group though, they get it, to some degree they have been there.  

     This year, we are taking our kids, as well as a few other family members. There are a couple of us who might actually run, and the rest will do our best to walk. I appreciate them showing support of me in this way. It also opens my world to them.  It's important for my kids to associate something positive with the word 'cancer'.  I'm looking forward to seeing people I met last year. The downside though is there are also people who won't be there this year. People who have become to ill to travel, or who have died from this cancer. There will also be people who are newly diagnosed and joining a club you never want to join. It's encouraging to talk to someone who is further along this bath, and to offer comfort to someone who is just starting.

     I'm also working on a ATC card collage for the silent auction at the walk. The project hasn't gone quite as well as I hoped. I've only received a few cards from other survivors. Most of them have come from my craft group, and my family.  I'll post pictures of it soon.  I'm hoping that actually seeing the project will help.  I would like to create another one to auction on ebay later this fall.  Artist Trading cards can be mailed to me. Financial donations can be sent to either of the groups sponsoring the walks, or directly to ACCRF online.


http://www.firstgiving.com/fundraiser/accjenniferstrong/jenniferstrongsfundraisingpage


Wednesday, July 22, 2015

Better Together

 I have few drawing cards collected for my next ATC for ACC tray. I could really use more.  September 12 is the Attack ACC walk in Molina, IL . I would like to donate an ATC tray to their silent auction. This is their 9th year raising money for  ACC research. It is also an opportunity for ACC survivors to connect with each other. I'm excited to be going and taking my family. My kids know a lot more about cancer than someone their age should. Events like this remind them that its something you can live with. 




 They use a deep red and white ribbon to represent ACC as a head and neck cancer, but it isn't necessary to use those colors. The theme, is hope, encouragement, strength. You might use angels, flowers, birds, photographs. I would like to have cards by September 1st, to have time to arrange and frame them. I am also planning to auction a piece on ebay later this fall. What inspires you? represent it on a 2 1/2 by 3 1/2  inch card and send it to this address to be included in the ATC4ACC collage. 

 What inspires you? represent it on a 2 1/2 by 3 1/2  inch card and send it to this address to be included in the ATC4ACC collage. 


Jennifer Strong

c/o South Milford Church of Christ
8030 East 600 South
Wolcottville, IN 46795


     After finishing the tray this spring, I worked on a new project.  The other trays I've assembled had general themes, with cards done by various people. This one is all done by me, using the song "better together by Jack Johnson. I was doing a craft swap on craftster.org. Your partner a list of quotes to inspire a project, and this song was on my partners list. It was the song they danced to at their wedding.

https://www.youtube.com/watch?v=seZMOTGCDag



     I hadn't heard it before, but it's sweet and I liked the imagery so i used that to inspire the atc cards for the tray. I also used a nautical theme that she mentioned, and some photos she had messaged me. This project took more planning so i used teal, white, and beige as a color scheme. I also tried to repeat materials 2 or 3 times. For instance, the burlap background in one of the smaller openings, is also used as a mat for a photo



I started with hand drawn sections ( the tree, the lighthouse).then to add interest, i cut them out and added patterned paper for backgrounds. Repeating those backgrounds also helped tie the photos and drawings together.








      Then for another layer, I added metal and plastic charms as well as photographs. I scaled the photos down and added a digital border to give it the look of a film strip. I really enjoyed taking a more planned approach on this project, and mixing diffrent materials.  My friend was also thrilled to receive it. 


 


Saturday, June 6, 2015

Scanxiety

Scanxiety:  the fear before having an x-ray, MRI, or ct scan scheduled, lasting until you know the results.

     It's this constant up and down. The tests themselves aren't bad ,once you know what to expect physically. I'm easily into double digits on the number of scans I've been through. Calm deep breaths and it's over.  It's the results that are the hard part. You worry about what it will show, if the cancer has grown or spread. Then if everything is okay, you're relieved, but there will always be another scan a few months or a year down the road.  The actual number of days varies greatly.

      After finishing treatment for my primary tumor, I had myself convinced that the first follow up scan would show that it was back. I'm not sure if there was a time in between that I didn't worry, or if it only decreased a bit, and increased in the weeks leading up to it. Then the scan itself, and a few more days wait until my husband and I were sitting in the oncologist office holding hands, not talking, waiting for that report. That first time it was good, then 3 months later, clear again. After a couple years, the scans spread out to 6 months apart, then to once a year. I stopped asking my husband to go with me, and the scanxiety shrank to the day of the appointment.I needed to know I was okay. After 9 years, the scans were just about as scary as getting my teeth cleaned.

     Adenoid Cystic Carcinoma doesn't follow the rules that other cancers do. With most cancer, if you have 5 years of clean scans then you are considered cured. You stop seeing the oncologist, stop having scans, and start your life again. With ACC, we were always told that it grows slowly, and that it is known to come back later after 5 years, 10 years or longer. They didn't know how long they would need to follow me. Along with the anxiety of the scans, there is also a comfort in knowing everything is okay, so overall I didn't mind the scans. I needed to know I was okay to be able to live my life.

     That changed with the 9 year scan, the nurse called my house instead of waiting for the appointment. There was a spot in my lung that had grown. It was there the previous year, but assumed to be a scar. Now it had doubled in size needed additional scans. The biopsy would show that the ACC had metastasized to my left lung. We were able to treat it with cyberknife (a highly focused radiation).  The fact that it spread to a new location tells us that there other microscopic cancer cells. There isn't a chemotherapy it responds to so we can't  go after those.We just don't know how fast they might grow. I've had a couple good scans, and due again. It's much harder now. The chance of seeing something is too high.

     I had the ct scan last week. There is this mental game when the tech comes back in afterwards. Legally they can't say anything, so you are wondering if you can tell by their behavior. Do they seem relaxed, or are they being extra nice because they saw  something? This time the tech recognized me from previous scans, so I didn't go over my medical history, even though it's in the file. I did mention that it was a checkup from the cyberknife last summer. When  she came back in room after the scan," so lung cancer?"  That could really freak someone out. Realistically though, my scans do look a little weird. My right lung is missing, I usually tell them that, and there's a scar from the radiation. I remind myself that unless she was comparing my current scan to a previous scan, she wouldn't know what she was looking at. I also remind myself that ACC has grown very slowly in the past, so even if there is something new, it's doubtful that if would be something large enough to need treatment. So we wait.

    My appointment with the pulmonologist to get results was about a week later. As days go by and they don't call, I relax a little. If they needed a biopsy or further scans they would call.  Their office was on my caller ID Monday, and I got scared. I picked it up and didn't recognize the voice. I've been followed by the same doctor for so long, I know his nurse's voice. She was the one who called me last year with bad news. This was just the scheduler calling to confirm the appointment.

     The closer the appointment gets, the worse the scanxiety. It's hard to make any plans beyond that day, that moment. How can you commit to going out to dinner with friends if you life could be falling apart?  I  find myself thinking about how quickly our plans changed last time  Instead of a summer vacation, I was doing treatments and recovering.  It can be hard to think about anything else.

     This time, before my doctor even sat down, he told me the scans looked good. No new spots, and no new growth around the scar. I felt the muscles in my shoulders relax. I hadn't even realized how tense they were. We talked a little, and the next scan is in 4 months. There is always another scan. We're relieved to have more time. But the relief is never complete. The thought is still hanging that the next scan may not be good. I've heard other people refer to ACC as their stalker. You know its out there, at times you feel as if it's watching. You just don't know when it's going to step out into the open. It's harder now that we know that it has spread. It used to feel like we were moving away from something. The longer I had clean scans, the easier it was to think it wasn't going to come back.

      Now it feels like we are moving towards something. Someday we'll see it again. This scan was good but the next one may not be. It drives me a bit crazy to be told that they don't know how long it might be. With other cancers, they may see thousands of patients, and get a decent idea of how it will progress. ACC is rare, so there haven't been a lot of studies, and most doctors will have only treated a few patients, if any. It also can grow quickly at times, or be almost dormant. I've been fortunate that in me, the cancer has grown more slowly than most. For a lot of people, when it metastasizes there are lots of tiny spots growing slowly. For me, there was just one.  For now I'm okay, and we are praying that it will be years before we have to deal with this again. I keep thinking 10 years, I need 10 years to get my kids out of high school. There are people who have lived 20 years or more after their primary diagnosis. There are also people who have had more aggressive ACC and lived only a few years.

    So much of what we know about ACC doesn't come from our doctors. It comes from people sharing their stories in online groups, or at get together. There is a strength in that. It helps to know there are other people living with this. There isn't a standard treatment. There isn't a clear what happens next. The adenoid cystic research foundation is the best  source of information. When talking about ACC that has spread and is growing they referred to it as " a journey with few signposts and even more potential paths to follow" .  If it's stable, there maybe no treatment at all, it maybe best to watch and wait.



     We're learning to live with the uncertainty. I try an focus on today. Today the scans don't show cancer. Today I feel good. Today my kids need their mom, and my husband needs his wife. Sometimes it's as simple as letting my son stay up past his bedtime to finish watching a movie with me on a Friday night. It can also mean scheduling a weekend away to not talk about kids or medical stuff, and to just  remember what it is like to be us. It will never be the same as it was before ACC, but it can be good, and blessed,  and joyful. I love the praise song"10,000 reasons" so I painted a canvas with chalkboard paint and hung it in my bathroom to remind me to look for the good. I laugh when I saw my daughters post it...she wants to add a few idea of her own.












Monday, April 27, 2015

Walk, Run, do something!

     I've been thinking a lot about my story, how to share it, how to narrow it down to a few minutes. It's harder than I expected, because there are so many other people's stories who have become a part of it. For the first 9 years, after the original surgery, I focused on getting back to my life, taking care of my family. The kids grew up, they started school, and I started substitute teaching. Cancer had a limited role in our life.

      My husbands company does a team for Relay for life with the American Cancer Society. Cancer survivors wear a purple shirt, and it's encouraging to see how many people do go on, and live healthy lives. We started taking our kids to make the word "cancer" less scary for them. They've grown up knowing I have checkups ,but I don't think they've given it much thought. Last year, after we found out the cancer was back, I designed a "strong and courageous" t-shirt for our family to wear at the walk. 

     I also started doing research into ACC. I really didn't know anything about how cancer research is funded.  Because ACC is so rare, their isn't funding from the American Cancer Society, or national organizations. Marnie and Jeff Kaufman formed  Adenoid Cystic Carcinoma Research Foundation (ACCRF.org) in 2005. ( http://www.accrf.org/wp-content/uploads/accrf_wsj_may2007.pdf  ) Their foundation has done a lot to raise money, and locate researchers to study ACC.  Prudence Jackson founded Adenoid Cystic Carcinoma Organization International ACCOI  in 2000 to help patients connect with each other. ( http://www.accoi.org/about-accoi/). Individual families have also created organizations to help raise money to support ACC research. 

     Last spring, through ACCOI, I heard about Live Like Andi, a walk/run in Michigan, in honor of Andrea Whitesell O'Connell.  She had lived with ACC for 21 years. The Money raised would go to ACCRF, ACCOI, and a scholarship fund. Our kids ran the 1 mile fun run. My husband and I walked it.
      I also got to meet other people with ACC face to face. The first person I met was Kara. She's actually on the board of ACCRF. She was fit and ready to run the 5 K. She also told me she had mets from ACC in her lungs, and had part of her lung surgically removed. In my mind, those 2 things didn't fit together, but it was so encouraging to see someone living an active life in spite of this cancer. I also met a couple people who where more recently diagnosed and I hope I was an encouragement to them. My husband said it was helpful to him as well. To know that other people went through months of being misdiagnosed, and it wasn't something we had missed.

     We were just dealing with something so rare, that no one would expect it. I was too young, I had no risk factors, but I had cancer anyway. That happens a lot with ACC. It grows slowly, and in places you wouldn't expect cancer to grow. That means there is time to live with it, but it makes it very hard to cure. Chemo therapies go after those fast growing cells, but that doesn't work with this. The best treatment is go be aggressive with the primary tumor. treating it with surgery and radiation, hoping for a cure.  When it metastasizes, according to ACCRF, "if you have tumors that are clearly growing, you face a journey with few signposts and even more potential paths to follow." There isn't a treatment right now that can go after those microscopic cells and stop them from spreading. The need for further research is so important. 
     There are other families that have created foundations to raise money for ACC research and patient support. We attended the ATTACKACC walk in Illinois last fall.  I found myself wondering what I could I do with my talents? I'm not a runner, but I am an artist. Creating this blog, and the atc4acc project is my way of sharing my story, and contribution to research funding. we'll see where it goes. 


Saturday, April 11, 2015

What is an artist trading card (ATC) ?

Think small, like a baseball card or a playing card. The rule is 2 1/2 inches by 3 1/2 inches. The base is usually stiff paper, an index card works well after it's trimmed. The small size makes it fun to try out an idea or a technique without a big time commitment. The small size also makes them easy to trade and mail. My kids inclue atc's in their letters to their penpals in Russia, and they recieve them in return. They also frequently trade them with their cousins as well. They either keep them in a binder, or pin them to a corkboard in their rooms. My son made this one for the ATC's 4 ACC project. His name and the date are on the back of the card.

I participate in online groups where we trade cards. I came up with a list of themes that I like and my partner chooses one to inspire a card. I do the same from her list, and we mail in 2 weeks. I just recieved a card for my angel theme. It's really cool, and it's not something I would have thought of myself.

Both of these cards will go into the framed collage. It's the variety that makes it interesting. One is done by a child, and one by and adult. One is completely hand drawn, and Once includes a preprinted image. I love them both, and I can't wait to see what card arrives in the mail next!

Wednesday, April 1, 2015

Time to start Drawing, Painting, Stitching, Crafting, whatever!

I've gotten permission to use my church as a safe mailing address, so send your cards here! 


Jennifer Strong

c/o South Milford Church of Christ
8030 East 600 South
Wolcottville, IN 46795


I've also stumbled into an opportunity to share my story. the Spring Salad, is a dinner for ladies in our community. I think the salad part is just to scare the men away. There are pasta salads, chicken salad, taco salad, deserts....very little lettuce involved. It's always fun, and after dinner there is a speaker. 


Awhile back, I had hesitantly offered to talk if they couldn't find someone, but this is way out of my comfort zone. They did end up finding a speaker, and she said she didn't want a fee for coming. so they came back to me, and suggested that i could briefly share my testimony, set up a  table with information about this cancer and my project, and they could take an offering to donate to the Adenoid Cystic Carcinoma Research Foundation. (ACCRF). That is huge to me. This is my home church, and they have always been there for us. I'm excited about this opportunity, but I'm nervous too. 


The dinner is May 5, and I would love to have cards to show. Sometimes we see surgery pictures, or that mask for radiation treatments, and the treatments can be brutal. I want to show the other side of this though. That this affects real people, who are living their lives in spite of this cancer. That they are spread across the country, the globe really, but there is a community that is caring, and helping each other by sharing our stories, to find hope by knowing someone else has been through this. 


Sharing information is huge. So many people go to that doctors appointment and are told the cancer has metastasized to their lungs, and that they have an incurable cancer. You have become invisable to the medical community, they have given up on you. But then you find ACCOI, and ACCRF and there is hope. You find out you aren't the only one. There is someone already fighting for you, making research possible and looking for those answers.  

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!

n



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 atcs4ACC@gmail.com.