Hi everyone. This is Marcus, I’m the guy Kristina is usually making fun of on this blog.
I just wanted to make sure everyone knows that she is recovering well. She had a rough first day and night due to nausea and her pain medications not working. As you can see, she’s resting comfortably now. She might kill me when she finds out I posted a pic of her sleeping, but I wanted you all to rest assured her surgeon has made sure that she’ll continue to receive great post-operative care at home. He and his OR team commissioned Hugh and gave him his new uniform. She woke up in the recovery unit to Hugh dressed in this outfit
In all seriousness, thank you all for being so kind and supportive of her. She always says she has the best blog readers, and you all have certainly proven that. Let’s all drink a bourbon toast tonight in hope that her pathology shows the margins on the excised tissue are clean, and that there’s no lymph node involvement, so she can avoid chemotherapy.
Today’s the day. By the time some of you read this, my “good” breast will be sharpied with art & “do not touch” reminders. I’ll be flying high on the goofy juice. My husband might even let me tweet for a while. He’ll take over for updates later. I’m having wires placed in my boobs. Radioactive dye will travel through me. I’m becoming Spiderwoman. Or I’ll get a superpower that’s even cooler.
The day after I got the final word about my genetic testing, Marcus and I hit the road. I borrowed my Dad’s convertible, and we set off for Tellico Plains (I waved hi to Benton’s Bacon as we passed by).
We took a detour to get doughnuts. And sex toys. And tobacco.
We seemed to start out with a good omen. My dad has Sirius radio. Right as we entered Tellico Plains and saw the Tellico River, this song came on:
This is one of my favorite drives in East Tennessee/North Carolina. It’s like the Smokies without all the people burning their brakes out on the downhill sections.
We stopped in at the Joyce Kilmer Memorial Forest. Ate some lunch. Hugh loved the peace and quiet.
We went on a short hike
Foam Flowers – missed most of the wildflowers this year, but will lay in them next year.
Wild irises are gorgeous.
These trees make me feel insignificant. That’s been comforting these past few weeks.
We headed back on The Dragon. Eleven miles has 318 curves. They’re really fun in a sports car.
I promise after I get rid of my cancer, I’ll actually remember to shoot videos the correct way.
Then made a detour to the Little River. Hugh got a little wistful.
Marcus and I got a little wistful. It was part of our first real date.
Then we smiled because the salad days will never be over.
We visited Cades Cove where we got to see coyotes, deer, bluebirds, a copperhead and a mama bear with two of her babies.
This view will never get old. Ever.
This turkey just wants to get laid.
Hugh is fascinated with wood stove cookery. He’s so strange that way.
A drive-by shot of Mama bear and one of her babies.
A tip for those of you snapping pictures of baby bears. Always make sure there are people in front of you. That way they’ll get eaten before you do. You’re welcome.
Saturday morning, I hugged some of the people I love. I miss so much being part of the vendor community this year.
Art and I love bacon & beer. It’s true love.
Dave from VG’s Bakery. Hugh agrees with me how delicious his baked goods are.
Lisa and her gorgeous glass artwork are amazing. And we got photobombed. It would have been so much cooler with Kevin Spacey.
Saturday night we had friends over for barbecue. Marcus cleaned the house, my mom brought baked beans and potato salad, and our friends brought delicious dishes to share. I took a nap. I love our motley group of friends. Marcus’s second mom was there, and it was so much fun to fill her in on the escapades Marcus and her son used to get into.
There should be lots of pictures here. I had too much fun to take them. I promise to get some at the “This shit is over” party.
Sunday I headed to church, got so many hugs and tons of love. My mom took me shopping. I now have an adorable sundress. And new pillows. And we got the news that close friends of ours got to bring their baby home from the hospital.
I have a picture of her gorgeous little girl riding Hugh. It’s awesome. I wish I could post it. Just imagine how awesome it is.
It’s time to get this shit on the road, so I can leave it in my dust. There are too many things to make fun of: rusty “vintage” cooling racks, stripey paper straws and bakery twine. Never forget bakery twine.
Thanks for the support! Thanks for the love! Thanks for listening to me bitch! And thank you for not posting pink ribbons in your comments. You all are the best. I have no idea how I got such a wonderful group of readers on this site.
At some point, I need a new twitter avatar. Even if Colleen is a little on the bumpy side.
Love you all. See you on the flip side of this nonsense.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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,
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.)
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.
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.
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.
Hugh seems to be right at home here. He’s already hanging out with Peaches & Cream Ken. The cats seem to like him.
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.
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.
So far Hugh has gotten to put his flippers through the boob holes in my breast cancer center’s MRI machine.
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.
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.
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.
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.
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.
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.
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.
But you know what really helps? That my amazing friends and family and my wonderful blog readers understand these concepts:
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.
I love you too. So damn much. Between Hugh and you all? I got this.