Life is getting in the way, so I'm putting this project on hold for awhile. If you follow me on facebook, you'll know that we had a kitchen fire at our house Christmas eve. No one was hurt, and the worst of the damage is isolated to the kitchen. At first we were relieved, grabbed some clothes for the kids and thought we would be home soon. Then we started talking to the restoration company. That estimate of weeks turned into months. They've been great helping us with all this. They took clothes, and shoes for everyone Christmas eve, and brought them back clean on Christmas day.We took the kids by the house a couple days later. Sometimes your imagination of how bad it is can be worse than reality. I think it was hard for the kids to understand at first that even though their rooms look fine, their toys, their books, the Christmas presents they had just received from us the night before, were all covered in a fine layer of soot. The smell of the smoke permeates everything, even if it looks fine. That smell doesn't easily go away. some things can be cleaned, some things can't, and some things are cheaper to replace than to clean. They will get most of their things back, just not right away.
The kitchen will be gutted down to the studs. The rest of house will need the carpets pulled up, the walls sealed and repainted, and the popcorn ceilings scrapped off. Before that, everything else needs to be sorted and removed. I've spent the last couple of weeks deciding, what to clean, what is nonsalvageable, and what just isn't worth the cost of cleaning. We've lived here 15 years, and had 4 kids in that time so it's a lot to go through. I'm also the most sentimental person in our house. All my photographs on the computer and back up disks are fine. It's easier to let go of things when you have the picture to hold on to the memory.
I also took pictures before they started packing and sorting. It was a week before I felt okay posting pictures on facebook. Now that we are packing and making lists of things to replace, they've been a big help. I have a collection of vintage dishes on the shelf above the cabinets. Some are okay, others were broken,and others are blackened. The cookie jar I inherited from my grandmother has plastic melted over it from a framed poster that was behind it. It's hard to remember exactly how many pieces and which brands. The auditor suggested looking in the background of old pictures to jog my memory. I think when we move back in and replace things, I'll take pictures to have just in case. Those big framed posters of impressionist art are easily replaced. That drawing of sunflowers my daughter did, is worth the effort it will take to clean.
I've learned a few things. Plastic tubs may not protect your art supplies from fire, but they can protect them from smoke.The scrapbooks that were in plastic cases, in rooms away from the fire, are fine. The outside of the boxes will be cleaned, and the books themselves will go into an ozone room to remove any lingering smell. The art paper in packets on shelves or in cabinets would be cheaper to replace than to clean. An afgan is worth cleaning by hand, but those 10 balls of yarn aren't.
It's a long process, but in the end we'll be home again. It may be even better than before. I'm grateful to be in good health and able to tackle this. I had a chest ct in early December and the tumor that had been treated 18 months ago remains stable. Thoughts of cancer have been pushed to the back burner for now as well. I have another scan scheduled in 6 months.Before we had kids, I worked as an architectural draftsman. So I'm back to that drawing up floorplans, and working on ideas for the new kitchen. It's easier to look at an empty house and see the possibilities. The other day I realized that now that it has been stripped, the kitchen is just a room, doesn't really need to stay in the same part of the house anymore. It made my husband and kids a little nervous when I started talking about moving rooms around not just appliances.
We expect it to be 2-3 months before we can start moving back home. For now, without art supplies, I can't do much on the ATC project. I've decided to put it aside, and come back to it after we are settled back at home. I bought a paint-by-number kit to have something to do, and I don't usually paint but this has been relaxing. Besides the house, that's the biggest project I can tackle right now.
Wednesday, January 27, 2016
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.
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.
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.
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
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.
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.
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.
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!
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!
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