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A First Mother’s Day

It’s my first Mother’s Day as a Mom. My son is 6 months old and we took advantage of that and went to a nice restaurant for brunch. I’m anticipating future Mother’s Days may lean towards activities that support a lack of ability to keep still.

My favorite thing as a Mom is to hear Noah’s giggle. It’s insanely adorable and I’m not sure there is anything I enjoy more on the planet, not even the GutterPunk coffee at Envie. (You think I joke, but talk to me about the combination of booze and coffee in-person and watch my face light up).

My favorite Noah book is the Pout Pout fish. Whoever gifted him that, thank you. I’ve turned it into the Pout Pout Fish rap, which I’m sure A. is grateful for. Noah has started getting interested in books beyond just eating them and I am delighted.

We do a lot of dancing and clapping right now. Noah hasn’t started doing either, but he really enjoys when we do. Hopefully, some kid takes pity on him and teaches him how to actually dance, otherwise he’s doomed with us as examples. But at least we’re having fun.

Noah’s favorite activity is smashing. I have a feeling this is phase that will last him quite some time. He’s just realized he can hold things in his hand and smack things with them, nothing can wrong with that right? Our friend’s 6 month old spent about an hour with us yesterday and her Mom said she wasn’t a smasher, well by the end of lunch she was. You’re welcome.

My Mom celebrated Mother’s Day by opening her very own garden shop, a longtime dream. I’m really proud of her and she continues to be a great example to me to not give up on dreams and continue to try new things. Someday I’ll write that book…

Thank you to my village of Moms. I appreciate all of the in-person, phone calls, emails, and Facebook responses to my many questions and moments of “OMG!” Some of you I’ve known most of my life and some of you I’m just getting to know, you’re all amazing and I am so grateful for your help and support. I know that Noah and I are both better for it.

Happy Mother’s Day.

The Last Day

Today was the last day of my maternity leave. Noah and I have had 12 weeks together and they’ve flown by. Tomorrow will be the longest that we’ve been apart since I first felt him move. I feel like my heart is breaking in two, but am also looking forward to the familiarity of my job and adult company after weeks of having no idea what I’m doing. This of course just makes me feel guilty and adds to more heartache. Being a Mom is hard.

I had no idea what I was doing in the beginning. In our first pediatrician appointment we had to be shown how to fold down the diaper top so pee doesn’t come flying out. This was day 5. Around this time I also read in one of my baby books how to properly breastfeed, since the lactation consultant at the hospital hadn’t done that. It turns out that breast feeding doesn’t have to be incredibly painful.

Recently I’ve learned that Noah can no longer be relied on to fall asleep when he needs to nap and that we need to keep an eye on him and plan for those nap times for him. This led to a night of me crying hysterically at what a bad mother I am to not have known this and how could I leave him when this is still in-progress. Being a Mom is hard.

I missed my Maid of Honor’s wedding. It was four weeks after he was born and I couldn’t leave him. He probably would have been fine, but I couldn’t handle leaving him for 36+ hours. I was a wreck about the decision, but just was utterly incapable of leaving him. I’ve also continued to miss get togethers, including Thanksgiving, as I’ve been too tired or needed to stay with him. Thanksgiving I spent crying in the dark because I couldn’t get him to stop crying and A. had gone to get us leftovers at his parent’s and was gone a whole 45min or so. Did I mention that being a Mom is hard?

I also got to see his first smile. He was sitting in his baby swing and I was being silly and he smiled and my world changed again. He smiles more and more every week now. Nothing has ever made me feel as special as his smile when he sees me. Sometimes he smiles just at the pure pleasure of seeing me or A. It’s earth-shattering.

I’ve gotten to experience the day by day change from an infant who could only cry to communicate to a baby boy who seems to have new sounds every day. He even has a range of crying and the heartbreaking wail happens less and less. He’s gone from a tiny nugget that spent most of his time with his eyes closed to staring wide eyed at the world around him and beginning to interact with it.

I was terrified of how fast he’d change. I knew from other kids that the baby phase is fast and furious and you can blink and have a child instead of a baby. It hasn’t been like that at all. It’s gone by quickly, but each new accomplishment brings us closer together. His joy brings me joy. His accomplishments help us connect better as he holds my finger now and tries to talk to me. He usually has a thoughtful expression as he explains things to me in baby talk, such as the beauty of our curtains and the all powerfulness of the ceiling fan (we’ve named it Stanley). He finds me hysterical, but he also finds will just start laughing at seemingly nothing, just delighting in life. It’s contagious.

The things I hope for him are simple, I hope he is kind and that he enjoys life. I hope that he is curious and grows into a good person. My hopes for myself are much lengthier. I hope I’m a good Mom and that I get it right more days than I get it wrong. I hope I figure out how to balance friendships with being a Mom, especially the friends I have that don’t have kids. I hope I don’t overprotect him and that I’m able to help him challenge himself and experience life. I hope I’m approachable and we can talk through the things that bring him worries or confusion. I hope for years of memories and laughter and smiles and discovery.

Being a Mom is amazing.img_2586

The Anniversary

Today is the worst of anniversaries. It’s the anniversary of this. There are a lot of potential anniversaries that come from cancer diagnosis and treatment. This is the one that is burned in my mind as the worst thing I went through with the most lasting consequences.

It’s a tough day.

I don’t remember the day of my diagnosis or the day of my first chemo treatment. I could look them up, but they aren’t days that stick out to me. It’s the day that I lost something irreplaceable, had badly advised surgery that’s left me with large scars that I see everyday and multiple revision surgeries. It’s the day that gave me some ptsd anxiety in hospital beds due to the way I was treated in the recovery room and in my care the first night I spent in the hospital.

It’s a tough fucking day.

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Furiously Happy art by John Rushing

Why So Silent?

I dropped off of the blogging map because I had a big life changing secret and then, when it wasn’t a secret, I wasn’t sure how to write about it.

Pregnancy is a hard thing for me to wrap my head around as a blogging topic. The last time I was chronicling anything, blogging was my way of coping and staying connected to people. This time I’m not looking to chronicle, just write about certain moments and perspectives as they come. I’m also figuring out how much I want to share.

Part of becoming a whole person again was reestablishing privacy and personal, things I couldn’t really have as a full time patient. I actually had a doctor’s visit this week where that really hit home for me. There was a resident in my cancer check-in, so an extra person in the room, and I felt a little weird having my boobs out with a stranger. During treatment I lost count and all sense of giving a fuck of the number of people who looked at, prodded, cut, took images of, etc.

I’m back to being a person again. And I’m also the frontline protection to a person that hasn’t even truly happened yet. It’s a lot of responsibility and new territory.

Being pregnant and a Mom is also incredibly controversial. There’s so much Mom policing out there that it’s intimidating and frustrating. It makes writing about it in a public forum difficult. I’m going to write about my experience, from my pov. I don’t speak for all Moms, much like cancer patients, we’re all unique snowflakes in what we go through and the best ways to cope.

I’m totally interested in other opinions and experiences (unless it’s a terrifying birth story, sorry that happened, but not looking for those and I have my own medical war stories). Feel free to ask questions, if I don’t answer it’s because I’m not interested in sharing on my blog. This is a dictatorship and not a democracy after all…

So let’s give this a go…

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‘Twas The Day Before Surgery… AGAIN

So here I am again, about to jump off the cliff into the semi-unknown, semi-known.  I’ve decided to be indulgent and go to the local coffee shop to have coffee (yes Mark, I’ve totally relapsed) and breakfast and write this since I’ll be stuck at home for quite a while after today. I’m even sitting at one of the tables that says “please don’t sit here unless you’re at least a group of two”! Hah! (Obviously I’m not the first one doing this here since I have a fear of being reprimanded by authority figures, even at a coffee shop). The weather today reminds me of Thailand. It’s steamy and hot, perfect for happy memories before something hard. We’re also going to take Wally pup on his first walk today, we’re supposed to wait until tomorrow, but we’re living dangerously.

I am a tornado of emotions. Some good and obvi some bad. I’m excited to get this done and over with. I actually finally actually feel happy about where I’m going and the care I’ll have. I’m happy I get to see my Mom really soon. I am over the moon that I have A. to stay with my in the hospital and have my back through this. I could make a list of all of the negative emotions, but I’ve mostly already done that, and I think if you tried, you could come up with them yourself. I’m going to eat this giant buttermilk donut hole instead.

I’ve been focusing on my choices through this. It’s something my therapist helped me do in the front end of this mess that helped me not sit in a deep dark hole through everything. It’s hard. Cancer is a shitty thing that happens to you, it’s not something most of us could have avoided by going left instead of right. But every step of treatment is a choice. No one can force you, even if it is the common sense, non insane track to take. What I’m about to go through is a big choice of mine. I could cop out and get implants at any time, less recovery and less pain. But I’m not. I’m choosing to do this and it’s helped me feel more of a badass and less of a victim in the last few days. I’m also rocking my “I’ll kick your ass” hair thanks to chemo. It’s a shame I didn’t get any fake barbwire arm tats to rock during this. I’m hoping once I emerge from my painkiller cocoon that I’ll have enough hair for a pixie cut and be able to look more girlie. (Casey and Jordan, assuming I’m well enough to make the wedding, I’ll either look like I just got out of prison or Twiggy).

My procedure starts at 7am tomorrow and I’ll be at the St Charles Surgical hospital until Saturday. Through some good and bad luck, one of my besties is in town this week. Bad luck because we originally had an awesome time planned and now I’m going to be in the hospital, but good luck because I get to see her smiling face during a really tough time. On that note, if you want to facetime, google hangout, email, or talk on the phone let’s do it. I have got nothing going on for weeks and have a cell phone this time around and better internet. Plus I have got some wonderful family here, but not a lot of friends so going to need to outsource some love. If you get really lucky you might get me when I’m feeling euphoric on the pain killers.

I think one of the hardest things is going to have to severely downscale my animal time. Wally climbs in my lap every time I sit on the floor in the most adorable almost to big to be a lapdog way. It’s going to be a very long time until we can do that again due to the abdominal and boob proximity.

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My giant eared lap dog

Nero has become the best cuddler ever, but cats are getting banished again to help keep the bed clean (no infections!) and because they tend to jump on me. Myles will have something new to complain about.

Farewell Myles cuddle. Nero declined to be photographed per usual.

Farewell Myles cuddle. Nero declined to be photographed per usual.

Yesterday was my pre-op appointment and everything went well. My doctor ended up running an hour and a half behind schedule which was lame, but so typical hospital. This appointment he drew all over me and they took photos to reference during the surgery. I look like Braveheart/NipTuck. He used blue marker obviously. I’d take a photo to show you, but there’s really no way to capture it without compromising myself on the internet so just use your imagination. The best is the FN on my boob, which A. said “Why does your boob say footnote?”. FN stands for fat necrosis, but foot note sounds way better.

Thanks for all the love and support through this fucked up trip. I’ll see you on the other side.

Lines In the Sand

Today I’m getting my last AC chemo treatment and I feel on top of the world. Once I get home and it kicks in I will feel under the world, but right now I’m riding high while hooked up to my last dose of this brand of poison. I want to high five everyone.

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Inside I’m smiling, I swear.

The first dose made me feel like I couldn’t do this and want to give up, which I didn’t because I decided to get through it for A. It was brutal every day and I couldn’t see how I’d get through 7 more treatments. Thankfully each one has been easier. None of them have been easy, but they’ve gotten better. First we figured out that one of the anti-nausea meds was making me sick and that having me come in on day 4 for fluids and a re-up on the anti-nausea meds helped a lot. Then we figured out that I needed another day on what I like to refer to as the “scary” anti-nausea med (responsible for that night I didn’t sleep) and it helped again. Now my fingers are crossed as I finish my fourth and last dose of AC that it continues the easier trend. It would be helpful because a week from tomorrow I’m getting in the car and heading out for New Orleans and the planned 14 hour first leg of the drive is going to be a bit tough if I’m not feeling human.

I find myself using the phrases “feeling human” and “feel like a person” because cancer treatment takes this feeling away. It takes away choice, control, power, health, and appearance. It can reduce you on a bad day to something you don’t recognize. I relate feeling healthier and being able to eat as “feeling human”. I relate making plans and not feeling/thinking about cancer during that time as “feeling like a person.” I enjoy both of these when they happen and look forward to when they’ll be the norm. I’ve already decided that I won’t do the reconstruction surgery until after Mardi Gras. That gets to be my first big thing to look forward to after cancer that I get to be a person again and take my niece and nephew to parades and have fun and not think about cancer. It’s going to be awesome.

Today is my last chemo appointment at Dartmouth, but don’t worry, I’ve got four more days I have to come back before I leave it in the rear view mirror for 2014. There were still some sad and interesting moments today though. I had a really good PT appointment. I love my physical therapist. She is such a wonderful person and really really good at her job. I haven’t had an easy or simple recovery from my surgery and she has made a huge difference. It’s also tough being touched where the surgeries took place due to pain, numbness, and mental hangups and she makes it so easy to work with her and not even think about it. I got a little teary eyed saying goodbye to her today and I feel very fortunate that I got to work with her. I also have improved to a really good degree which makes me feel good about how things are healing. I can’t put my arm straight out and raise it up above my head, but I can get it about 70% there which is a huge improvement from when I started and awesome since I’ve done very little of the exercises outside of PT because of how I’ve felt from chemo.

Today isn’t my last day in the Infusion Suite since I’ll be here Friday to get fluids and anti-nausea meds to get me through the weekend and then Tuesday I come back for my protect my ovaries giant shot in the stomach. Always a party with me. However, I do have a story from today…

But first to put it in context, a brief blurb about insurance. I know that some family and friends are republicans that read this and that’s cool. I don’t consider myself a democrat because they’re just as corrupt, but I definitely wear my Bleeding Heart Liberal tattoo with pride. It’s on my ass in case you were wondering. So Obamacare… I am the first person to recognize that this needs work and is far from perfect (seriously, I have a certificate), but let’s move forward instead of backwards. Here are my personal experience with this that will hopefully help anyone feeling anti warm up to the idea.

1. I originally wasn’t even going to get tested for the breast cancer gene because I was worried it could be used against me as a pre-existing condition. Legally, insurance companies can no longer hold pre-existing conditions against you as a reason to not insure or charge you more. This is fucking amazing. Seriously. Fucking amazing. As someone who has breast cancer at 30 this means that I can look forward to fair health insurance for the rest of my life (as long as it doesn’t get fucked up by the politicians). This means that people with Huntington’s Disease can get insured fairly, this means that so so so many people with medical conditions that they were born with and can do nothing about can get fair access to health insurance. I love this.

2. A. and I quit our jobs so we could longterm move to New Orleans. Because of the Obamacare market place we were able to say ‘no thanks’ to our $400-500 a month COBRA insurance (although now I’d take it) and purchase insurance right away that was more affordable and tailored to our needs. A. is on low tier because he’s not paranoid like me and I’m on the gold level (thank god since I got cancer while on it) which means that I pay a lot more, but my deductible and out of pocket aren’t crazy which makes a big difference in our current situation. Being able to purchase insurance at different tiers and compare to other insurance companies is a good step in the right direction. The thing I would change about this is that it should be the same tiers for every state. I’m moving to a red state with a psycho governor (look for him in the next presidential election) so the insurance selection in Louisiana are much poorer than the ones in California. This isn’t fair. Every America deserves the same insurance opportunities. Like my insurance CIGNA covers me in Louisiana, but it isn’t offered there, so January 1st I have to get completely different insurance.

3. You have 60 days after moving to a new location before you need to change your insurance. This is saving us thousands of dollars and I can’t even put a dollar amount on the stress it would add for me to have to get new insurance mid-chemo cycle and need to get everything approved and setup in the very short time I’d have before my next treatment. We’d have to also start over on out of pocket and deductibles and then start over on those in January again. Just bad news bears. So again, this is fucking awesome.

As I said though, it’s far from perfect, but let’s not throw the baby out with the bathwater. Let’s move towards making healthcare less of a business. The hospital should not charge one person $45,000 for something because they don’t have insurance and the person with insurance get’s a discount so they and their insurance only pay $13,000. One cost for everyone and equal access to insurance. Let’s start there.

So anyways… The lady next to me in the infusion suite was hella chatty. I knew I was in trouble whe she pulled the curtain divider back. She also didn’t really have anything interesting to say, just wanted to talk and talk and talk. I wasn’t feeling too hot so I put my headphones in and checked out the new Taylor Swift album and some great playlists my friend Mark made. A. made the sacrifice and listened to this for a couple of hours. Maybe 3. Some gems during this were “how long have you been married” (completely out of the blue, no conversation was going on about this), “How old are you” (same, totally random), and the diamond from Aladdin level question “What does she have?” referring to me. YOU NEVER ASK THIS QUESTION. Never ever ever ever ever. People will volunteer this if they want to, but you never ask this in the cancer ward, let alone when people are getting hooked up to chemo. Regardless of appearances, you have no way of knowing what it is and what stage it is (see Brittany Maynard for example who looked young and healthy).

From there I finally heard something that led me to enter the conversation briefly. Moving on from inappropriate questions like, what kind of cancer does your wife have?, she moved on to sharing that she’s hoping that Republicans take over this election. I told her that I like my insurance and that Obama’s policies made it illegal for insurance companies to discriminate against preexisting conditions which will be the story of the rest of my life because of breast cancer. She then listed off 3 or 4 non-cancer conditions that she has (and I didn’t need to know) and was like, oh that’s probably me too. She was shocked that we bought Obamacare and let us know that she gets good insurance through her husband’s job. I’m sure that’s very nice. The thing that made me laugh sarcastically in my twisted little heart was then she went on about how pleased she is about her daughter being able to still be on their insurance in her 20s (another policy created in Obama’s term). Apparently he’s fucking up Isis and Ebola, so it’s time to seize control. I was bummed that we missed the opportunity to tell her I had ebola when she asked about my condition. Next time…

Sometimes I Need a Good Whine/Vent

So even though I’m taking the summer off and hanging out in beautiful Vermont I’ve managed to get really sick. No stress or lack of sleep, but sick as a dog. Started out with flu like symptoms and have been stuck with a nasty respiratory thing for about a week now. I’m now on steroids and antibiotics, so hopefully I’m on the mend, but in the meantime, here’s a list of things I miss in my current state:

1. Non-noisy breathing

2. Not coughing

3. Not feeling things in my chest when I cough

4. Not being exhausted

5. Swimming

6. Wine

7. Beer

8. Saying no to exercise because I don’t feel like it, not because I can’t

9. Drinking tea because I enjoy it, not because I think it might make my chest feel better

As a reward for making it through this self-indulgent post, here’s the top responses to the poorly thought out VH1 and Robin Thicke twitter Q&A #AskThicke: Click it, you know you want to