When It Comes to Cancer, Always Get a Second Opinion

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Actually, when it comes to any major surgery you need to get a second opinion. Two weeks ago, I got a second opinion from a doctor at the University of Tennessee. I got another mammogram done. Another ultrasound was done. I waited a while and then met with another surgical oncologist.

He told me I was an ideal candidate for a lumpectomy. Then he explained exactly why that was so. I asked him the same question I asked the other doctor – what would you do if your mom/sister/daughter was in the same situation. He told me he’d tell them the same thing he told me. That given my age and type of cancer I have, he thinks it’s the best option. After reading more about my cancer in the Susan Love book (My mom and I refer to it as the bible of breast cancer), I feel even more strongly that a lumpectomy is the right choice.

There are risks involved. As my doctor cuts around the margins of the tumor and the precancerous cells, he sends them off to pathology. He told us that the quick test is about 75% accurate  If they find more cancer cells in the margins after they’ve done a complete pathology, they’ll have to open me up again and take more out. It still involves pain and probably some disfigurement of my breast.

One of the things I liked best about this new doctor was that he was the one who brought up issues of sexuality & self-image. As my Dad jokes, when it comes to medical issues the first thing a guy thinks of is “Am I still going to be able to have sex?”. There are a lot of doctors who aren’t candid about about how operations or medications will affect a woman sexually. This doctor didn’t talk down to us. He explained everything in complete detail. He answered every single question, and he was honest about what he couldn’t be sure of. I’m glad I got a second opinion because while I’m still scared, I feel better about having to deal with this whole mess now. Disregarding the genetic testing results, I have choices. I have options. I have the tiniest semblance of control.

If I’m able to have a lumpectomy, I’ll need to have seven weeks of radiation. That will not be fun. I also run the risk of having a much more complex type of breast reconstruction if the cancer comes back in the same breast, and I need to have a mastectomy. After thinking and talking with a lot of people, I decided to go with a lumpectomy if I’m able to. I’m willing to roll the dice. As this doctor and other people have said, I can always choose to have more removed; I can’t put anything back.

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I understand why some women choose to have their entire breast removed or even both breasts removed. Just knowing that the cancer might reoccur fills them with such anxiety, that they want to do anything that will lessen the risk. If my genetic testing comes back with a really bad gene mutation, I’ll be removing both. But different women make different choices – that’s a good thing. I hope to pay back some of the kindness that’s been shown to me by women who’ve already traveled this journey. When I do that, I’m going to keep the frustrations I’ve felt and lessons I learned very much in mind.  Each of our own cancer experiences are different, and I’m learning that it’s best not to generalize. It’s best not to give advice unless asked. It’s best to do more listening than talking.

I am still waiting on the results of my genetic testing. I was told my results would be back in 10-14 days. 14 days would have been last Wednesday. I called Thursday morning to see what was going on. In the nicest way possible, I let the lady who handles all the genetic testing know that I was upset and scared. This is not an inconsequential test. The results of this test determine whether or not I’ll need a bilateral mastectomy. I called back today because the results were certainly going to be in today. I called in to find that the woman who handles all the genetic testing wasn’t working that day, and no one could help us out by giving me the answer.

I can’t even begin to explain how upset I am. My surgery is scheduled on Tuesday. I’d like more than a week to process the idea that both my breasts will have to be removed, both my ovaries will have to be removed, and that I will probably not have biological children because of the fear they might carry these genes.

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I feel like one big swirling mess of fear. Genetic tests, surgery, pain, chemo, radiation – all these things swirl around and around in my mind until it seems like a tornado of despair. I go to bed and wake up – still feeling exhausted. It feels like my brain just keeps churning through the night, trying to process something that you can’t begin to sort out until you know all the information. Even then, you don’t have the time to really start processing it before you have surgery. It’s cancer, and it needs to get the hell out of your body.

I know my posts have been kind of heavy lately. Hugh the Cancer Fighting Manatee has not made nearly enough appearances. I am doing a horrible job at making cancer feel bad. I’m hoping the F-5 tornado in my brain will slow down to a F-3 once I know what fork in the road I need to take.

Update: I wrote most of this post on Tuesday. Tuesday night I found out that I didn’t test positive for any cancer gene mutations that they currently know of. Marcus and I cried for 30 minutes after we got the call. My mom cried. Hugh cried. The cats demanded our attention. We drank a toast to having faith. We drank even more. We ate cheese and watched Dodgeball. For a few hours, I felt like a regular person. I even felt a little beige.

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Well, as beige as I’m ever going to get.

 

Posted in cancer, musings | 8 Comments

Cancer, Oncology & Genes – I Feel Like I’m Back in College Biology and Physiology

Those of you dealing with chronic diseases who have to attend doctor’s appointment after doctor’s appointment? Caretakers of loved ones with chronic diseases? You all are wonderful, and I wish I could send you all your own stuffed animal manatee. The week before last was one doctor’s appointment after another. The one day I had free, I curled up into a ball and slept the entire day. My brain is exhausted from trying to process and understand all of this information. My body is just exhausted from all the stress.

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The last time my mom’s oncologist saw her, he gave her a hug and told her he hoped he never saw her again. Unfortunately, he did. Marcus and I got confused and came in the back way to his office, so we saw the people that were receiving chemo treatments. It always amazes me that when you see the people actually undergoing treatment, they never look as beautiful, shiny or happy as the people on the front of the cancer brochures and magazines. They look like real people going through a very trying ordeal.

 photo (5) Gee My Hair Smells Terrific! Now with Extra Cancer!

I got to start out the visit with the wonderful experience of finding out I needed to have my blood drawn. I had let down my Girl Scout guard, and hadn’t thought to call and see if this was going to happen so I’d have adequate anti-anxiety medications. I tell you, there is nothing that makes you feel cooler than lying back in the medical version of a Lazyboy recliner, sobbing, crushing your husband’s hand all while your mom rubs your legs. You are also furiously trying not to hyperventilate, and after a few minutes are not successful at this. On the bright side, you manage not to pass out. It doesn’t matter how sweet and understanding the nurses are when they tell you that they see huge grown men pass out in front of them all the time. It doesn’t matter how many times my mom explains to the nurses the very horrible way that I developed this phobia. I still feel like a complete idiot. Then I get to meet the man who may become my oncologist.

1f4427ad1d8b78ca865390e5c539d08deaac7c4b_m (1) Because why not. You already have cancer.

I really liked him. The thrilling experience of having my breasts examined in front of my mom and my husband was a bit amusing. But he gave me some peace of mind about the possibility of having children. It’s not a sure thing, but I have time to process it and see what my options are after surgery.

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The next day, I met with the Nurse Practioner about calculating my genetic risk. Going in, I thought I had maybe a 10%, at the most 15% risk. I brought a detailed family history, but as you get to people that are older, it’s a lot harder to do. For example, I had a great aunt that died from liver cancer. Did it start out as breast cancer? And there are always those families that are so well versed in secrets that you never know what the truth really is. I’m predominately of Irish heritage, but I’ve got a decent amount of Czech & Eastern European blood in me as well. Some doctors feel this means you have an added risk because they are also countries where Ashkenazi Jews tended to settle. It’s not something that people like to talk about, but Jewish people in these countries were persecuted constantly. When they were forced out of their homes, forced to assimilate or forced into hiding, some of them married people who were not Jewish and had children. But at one point, they lived in small villages and tended to be very insular because of their religion. Women who have a strong Ashkenazi Jewish heritage need to be very careful and get tested. They have a 1 in 40 chance of having one of the “killer” breast cancer gene mutations.

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It took her quite a bit of time to get done putting all the information into the computer program she has. And the number that spit out? 31%  That number freaks me out. I don’t really think there’s a bright side to this, but my percentage was high enough for TennCare to cover the costs of the tests, so there’s that. And now I wait. If it comes back positive, the decision is made for me. Both breasts will be removed, and I’ll have to decide when to remove my ovaries because I’ll have a much higher risk of ovarian cancer.

photo (7) I paid $1 for CatPaint. Using it for no reason at all makes me feel like I got my money’s worth. Also laser beams are awesome.

I’ve noticed something very interesting about myself. I work from home. Now I usually put on a halfway decent outfit (and a swipe of lipgloss), but that’s it. Every time I’ve gone to see one of these doctors, I’ve made sure that I’m all decked out (for me). Nice dress, nice shoes, matching jewelry. I actually style my hair, and I put on real make-up. Marcus asked me at one point if it was my armor. I guess in a way it is. As stupid as this sounds, I want these men and women to see me as a put together woman who owns her sexuality and who doesn’t take it lightly. I want them to understand that I am a whole person; I am not just a set of breasts that need treating.

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Believe me, I don’t look down on women who just want to cut the damn things off. I’ve had that same feeling. It’s a very strange concept to process that one of your boobs will kill you if you don’t deal with it. But there have been so many times that modern medicine ignores the fact that women are sexual beings as well. For example, there were many doctors who prescribed anti-depressants that had an adverse effect on women’s sex lives. It didn’t start getting discussed and addressed by most doctors until men took those medications and started to complain. Without grossing anyone out, I would like to have a boob left that will actually feel sensation if that’s possible. If it’s not possible, I’ll figure out a way to deal.

The thing I want most is for all of this to be a bad dream. I want to wake up with my heart pounding and covered in sweat. I want to run away and hide, hoping that this will all go away. The thing that I want most desperately is to not have cancer,

Posted in cancer, musings | 8 Comments

Cancer – Latest Research Shows that Manatees Can Actually Cure It.

Hello. This is Hugh.

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Hugh Manatee if you’re formal. Mr. Manatee if you’re nasty.

I have a friend named Lisa. She is insane. That’s a quality I really respect in a friend because it means I have to spend a lot less time explaining why my ideas are great ideas. Lisa has her own manatee. His name is Harlan. Harlan was a gift from her husband, and Harlan brings her comfort when he makes sweet, sweet manatee love to her. (This involves lots of squeezing, manatee hugs and occasionally spooning.)

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I opened my door a few days after I had let my close friends and family know about my cancer and saw that I had a package from Amazon. At first I thought it was a juicer. I’ve heard that everyone diagnosed with cancer gets a free juicer. One of the cancer rules is that I now have to juice all the time. I’m down with that. Kale juice is actually pretty tasty in a bloody mary. But to my surprise, I saw a gift box. I opened it and there it was: my own personal manatee.

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Hugh also likes his booze. He and I are besties now. I don’t share the same fondness for lettuce, but no one is perfect.

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I spent quite a bit of time trying to decide what gender my manatee identified with. I was leaning towards a girl manatee because girl manatees seemed like they’d be more understanding of the whole having breasts things. But then my husband accused me of being sexist. He started his argument out with the fact that men can get breast cancer too, but his real argument was that guys like boobs. Therefore, my manatee should be a guy.

I still wasn’t convinced. Like baby names, I collected a cute list of girl manatee names: Esmerelda, Gertrude, Trixie (after Trixie Belden of course). But then my husband pulled out the big guns. If my manatee was a boy, he could be a drag queen. He gets me. He really does. So I allowed him to name him as a reward for that brilliant suggestion. And he came up with Hugh. Get it? HughManatee. Please don’t encourage him.

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Hugh seems to be right at home here. He’s already hanging out with Peaches & Cream Ken. The cats seem to like him.

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photo (19) Hugh promptly ate the flowers that another of my wonderful friends sent to me.

Hugh has been and will be joining me for all the fun cancer activities I have planned for this wonderful visit to Cancerland. He’s got his own special manatee bag.

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My mom made me promise to not introduce Hugh to my doctors on any of my first visits. Luckily, Hugh’s flippers were crossed. Besides – my mom should know me better than that.

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So far Hugh has gotten to put his flippers through the boob holes in my breast cancer center’s MRI machine.

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Like I’ve mentioned before – a breast cancer center seems to have everything a regular cancer center does, just with boob holes in everything. He got to pose with the two lovely radiology nurses. He got to stay in the control room while my MRI was being done. My nurses seemed delighted with Hugh, and thought he and an amazingly high amount of Xanax would get me through this MRI in a very creative fashion.

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I got a picture with two of doctors. The doctor that performed my biopsy and read my MRI results is here. She’s awesome. Cancer should never fuck with her.

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My surgical oncologist made me promise not to post his picture all over Facebook. This is a shame because this man has gone to the Crystal River and swam with manatees. He even has a small manatee figurine (one of his staff told me). Luckily, I came up with a compromise. I only have the iPhone app for CatPaint. I was very upset to find that there was no ManateePaint app.

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It’s in his surgical notes for my case that his Hugh will be able to hang out in the operating room and send me calming manatee vibes. I think he would be very good at poker, because at no time did he give me a “Bitch – you be crazy” look.

The people he works with are also amazing. George is the guy in shades. Cancer should never fuck with George.

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Hugh hung out with my mom and me when I had to go to UT for bone scan & CT scan. This was terrifying. First, I had to get an IV put in. I’ve already detailed my phobia of needles. Then I had to take tests that would tell me if my cancer had gone metastatic. Luckily I had a man that was a boss at starting IVs AND he liked Hugh.

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Hugh cuddled with me while I got the IV put in (He thinks I’m HILARIOUS when I take Xanax) and he helped me drink the crazy amounts of water you have to drink when you have these scans.

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Like I’ve told you all before: I’m not really interested in fighting cancer. I’m leaving that up to the professionals in the medical field – both doctors and researchers. I want to get through this whole experience and put it behind me. While going through this, I want to make cancer feel really bad because I’m mocking it so much, but I know it disconcerts some of you when I say I don’t plan to kick cancer’s ass. You don’t need to be scared anymore. I’ve got Hugh. I can concentrate on getting better and mocking cancer; Hugh can attack cancer with his crazy ninja kickass cancer moves. Hugh has some amazing gun skills as well. More news on that later.

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But you know what really helps? That my amazing friends and family and my wonderful blog readers understand these concepts:

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I added a new item to my bucket list – swim with manatees. And all of the silly gifts, silly and/or heartfelt notes, offers to make superhero capes for Hugh and/or me and cheering me on with encouraging messages on Facebook, Twitter, my blog and the message board I run? I know exactly what that means.

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I love you too. So damn much. Between Hugh and you all? I got this.

Posted in cancer, musings | 16 Comments

Cancer – Half a Breast or A Whole One?

Note: If for some strange reason google has sent you here for an inspirational story about fighting cancer, you probably are going to be disappointed. I don’t plan to battle, fight or kick cancer’s ass. I’ll let the doctors and researchers do that. My goal is to get through it as best as I can, while wearing as little pink as I can, and mocking cancer and me as much as I can. I want cancer to slink away because its feelings are hurt. I also want to warn you that there is a picture of a woman bare chested in this post. She decided to get tattoo instead of reconstruction.

I got the final surgical evaluation of my breast last week. I listened and asked questions and was as calm and cool as a robot. I giggled in the back of my mind at the fact that a 50-ish year old man was drawing boobies on a dry erase board. Got a picture of it all for further reference. Got to hear how my MRI concerns them because it’s a bit confusing. And then went home and cried.

So the details on what’s going to happen to Colleen? For those of you just showing up – my boobs have names. I figure I can name my breasts if so many men can name their penises. I have two choices.

facebookboobmeme Because it can never be said enough.

I can get a very invasive partial mastectomy. That would be followed up by 7 weeks of radiation five time a week. There is a possibility that the tiniest bit of cancer would be left and I might have to deal with a full mastectomy at some point anyway. And they would have to use skin from my back because the skin on my chest would be too damaged.

I can get a modified radical full mastectomy. This involves taking my whole breast, putting in an expander, and getting a new boob later. The other breast would need a slight tuck and maybe (but probably not) a small implant. The idea of me with breast implants boggles my mind. I could also get my other breast removed so my boobs would be perfectly matched, but no thanks. I’ll take my chances with the other one and retain some of my god-given rack.

robotboobs I’ll admit -these would be kind of cool.

I know this is my decision and everyone who loves me respects that. But other people who love me do play factors in it. My husband wants me to have the full mastectomy. As does my Mom. I could get the partial and then have to go through all of this again and end up getting a full mastectomy done. I asked my doctor what he would tell his wife or daughter to do. He said he’d recommend a full mastectomy.

Wednesday, I got a genetic test to make sure that I don’t have one of the myriad of genes that directly affect breast cancer. I’ll talk about that later in another post. Luckily TNCare will pay for it. If I have a gene that greatly increases my risk for breast cancer (like BRCA1 or BRCA2), I’ll probably have to have both breasts removed and possible my ovaries. I’m trying not to think about that right now. It takes a couple of weeks to get the test results back.

There have been a lot of discussions of fertility, adoption and foster care in my family the past week or two. I’d like to offer some advice to some of you on the way you should treat women who are infertile or who might not be able to have kids due to a medical condition. They don’t want to hear that there are so many ways to have kids besides the normal route. They already know that. It’s insulting – many of you chose to have a biological child instead of adopting, surrogacy or taking in foster kids. Seriously – shut up. Just shut up. Do you know how much it costs to adopt a child, either here or from another country? And do you know how heartbreaking it can be to try to adopt within the foster care system. Unless you’re willing to offer up your healthy uterus for surrogacy, please just tell that woman you’re sorry and life can be so unfair sometimes. Give her a hug. I hope you’ve all noticed that I’m pretty big on the idea of not repeating platitudes, listening instead of talking and hugs. 

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I got a CT and bone scan done last week. While I was waiting for the scan, I noticed this woman just trying to hold tears back. No one was with her. My heart just hurt for her, but I didn’t want to intrude on her or seem pushy. And then I thought, “You know what? Fuck it – she’s hurting. Don’t be a coward”. I went up to her and asked her if I could give her a hug. She burst into tears and put her arms around me and just cried. I cried with her. Her husband had suffered a fall and hurt his leg and shoulder. A couple of weeks after this happened, he started acting mean towards her and telling her he was going to divorce her. It was obvious her husband had suffered a brain injury of some kind. She couldn’t even be back with him when he was waiting to get these tests done because he hated her so much. Can you even imagine? To have the love of your life fall and change so much that he hates the sight of you? I don’t even want to give her first name out, but anything you feel comfortable sending to this women and her husband (prayers, mojo, love, healing thoughts. etc) please do. She hugged me back and told me I was just a baby – that there was no reason why I should have to deal with breast cancer. And then they rolled her husband out from his tests and she had to leave. I’ve decided that I’d rather deal with the embarrassment of someone telling me that they don’t need a hug, than ignoring someone crying in front of me. Both of my CT and bone scans turned out fine which was a huge relief.

417551_166000880221416_1010668555_n Well yes, but you still have to drink butterflies.

I also went to visit a plastic surgeon last week. He’s known as the boob man here in Knoxville and specializes in reconstructive surgeries. I got into my little tie-front robe and talked to him about what would exactly happen if I had a full mastectomy. Then it was robe off and boobs out. I swear I’m at the point where I’m just about ready to whip my boobs out to anyone. I was at the orthopedist the other day and felt so strange sitting there fully clothed. I stood in front of this very attractive doctor while he measured my boobs. My husband sat there on the couch.

I heard about my options and what would happen. Basically my surgery oncologist does his thing and the plastic surgeon takes over. I get a new nipple constructed for me. More importantly I had to learn this interesting tidbit and can never go back to the place where I didn’t know this. I feel like it’s my duty to inform as many people as possible about this fact now. The areola? It gets tattooed on. I’m terrified of needles, so I never made any bad tattoo decisions in my 20s. My first tattoo will be an areola. If you ask nicely enough and are willing to tip me, I’m at the point where I’ll be happy to show you.

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Than I got what I like to refer to as breast mugshots taken. Front view. Angle View. Side Views. Back View. And I was shown pictures of women who had work done because of breast cancer. This doctor does very nice work. He’s known for it. But the girl who never had a desire to have breast implants will now have at least one and I will always have a scar on my breast.

Again – this is another topic that people feel like they have right to comment on. Why don’t I just cut them both off so I can get a matching set? Because I really would prefer to have one boob that has some sensation in it. Why don’t I get a giant set of boobs? Because my husband has no desire for them to be bigger and I am so short that I would look like I was constantly falling over. Why don’t I get them both done so my boobs will match? You know what? I heard my measurements. I already have very symmetrical boobs. When my doctor told me that, I kind of felt like I got a B+ on my boob test. Why should I get reconstruction at all and just get a really cool tattoo there? Because I like to save my badassery for the things I say, not for the things attached to my chest. I think it would just distract from my amazing wit.

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As I got dressed, my husband told me “That was a lot less weird than I thought it would be”. He paused and followed it up with “I guess that’s the closest we’ll get to having a threesome”. I laughed hysterically. We left the office, got in the car and I burst into tears. I cried the 30 minutes to my parents’ house and for about an hour more while I was there. I don’t want a new boob. I want my old one. And I have very little choice in the matter.

I still can’t believe this is happening to me. In a few short weeks, we went from baby making plans to how much boob should be removed plans. Last week was not a week full of very many good cancer jokes. Sometimes shit happens.

Posted in cancer, musings | 22 Comments

Colvin Family Farms – Hooray for CSAs!

Week 2 CSA Vegetables

First of all, I’m going to throw a little basic knowledge your way just in case you have no idea what a CSA is. A CSA stands for Community Supported Agriculture. A community of shareholders agree to pay for a share of a local farm’s produce. The money paid upfront allows the farm to better plan their crops and allows them to invest in their farm before the growing season begins. We – the community of consumers agree to share the risks and benefits with that farm.

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My husband and I have been trying to eat locally for the last ten years. It was quite challenging at first, but Knoxville has tons of options to do that now. We’ve got wonderful stores like justripe. We have a farmer’s market almost every day (my personal favorite is the Market Square Farmers Market). Restaurants are serving meals using lots of local produce. We even have food trucks serving food made with local ingredients. And lots of farms are now offering CSAs. Last year I participated in Colvin Family Farm’s CSA. We’re a family of two. We are not vegetarians. I grow a fairly large garden. So of course we made the brilliant decision to get a full share.

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And you know what? It was brilliant. We got a great deal. We had an amazing selection of produce to use that was so tasty. We were able to keep our money in our local community. We were able to support something my husband and I fervently believe in. We were able to make a political decision – every bit of money we spend on local foods and small producers keeps money out of the hands of companies that use chemicals indiscriminately, spend millions of dollars to get fat farm subsidies in their hands, and who spend untold amounts of money to keep people from learning what foods contain genetically modified ingredients or hormones that they might not want to ingest.

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I was shocked by how much produce we received each week. I wasn’t shocked by how good it is. I’ve always known that produce straight from the farm and/or garden is always a lot tastier and usually higher in nutrients. And I will argue to the day I die that organically grown produce just tastes better than conventionally grown produce.

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I was amazed at how adept I became with using all the produce up. I would say that altogether, we used about 90% of the produce we received. When we didn’t use produce, it was usually because our week was unduly hectic or the box contained an item we both dislike, and we weren’t able to find someone to give it to. In a nation that wastes approximately 40% of its food, I’m pretty impressed with what we were able to do.

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This year I’m a virtual farmhand for Colvin Family Farms! I’m going to be sharing my tips on how to store, plan and fully utilize the produce that we’ll get in our box each week. I’ll be sharing resources that have helped me. I’ll also be sharing recipes that will give you ideas on how to use the vegetables you get in each box. Cooking CSA style is not difficult but it does take a little getting used to. There are two other bloggers this year that will be joining me, and I’m excited to see the creative ideas and recipes they use as well. Betsy is blogging at Full Tummies and Lia is blogging at Thinklia.

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What am I bringing to the Virtual Farmhand table? I’ve been a food blogger for years. I know lots of food bloggers, and I know the ones who consistently post delicious recipes. I’ve been eating locally for years and know how to shop and plan a menu around the food you get. I’m an adventurous cook, but I also run my own business and do freelance writing. I don’t have endless hours to spend toiling away in the kitchen. I love trying new recipes and have had some amazing successes and some amazing failures. I will be very honest with you about how I do each week. I’m on a strict budget. I’m also adding the extra challenge of dealing with breast cancer this year to the mix.

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There are various ways to follow my blog.You can subscribe to it by email or RSS feed. You can like the Facebook page for my blog – I post links there whenever a new post goes live. You can follow me on twitter, either using my general feed or be searching for the hashtag #eatyourcsa.

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I post about a lot of different things here at Mouth From the South – I was recently diagnosed with breast cancer, and I often blog about that. I’m a cocktail aficionado. I post about my cats. I post pictures. I sometimes swear a lot. If you’re not interested in reading any of the above, you can just read my CSA posts and recipe posts using these links.

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I’m eagerly looking forward to the day we get our first box of produce. And if you haven’t signed up but would like to, here’s a link to join: Colvin Family Farm’s CSA

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Note: My husband and I paid for a CSA share last year with Colvin Family Farms. However, since I am blogging about their CSA this year, I am receiving a free share for helping out as a virtual farmhand. For the record, if this opportunity hadn’t come up, my husband and I were planning to purchase another share this year.

Posted in Eat Your CSA | 15 Comments