Closer to Fine…

Recently, my bestie Meredith posted Closer to Fine as her weekly musical gift on the AndNoCasseroles Facebook group. I was in my car and put it on to have a listen since it had been a while.

“Closer To Fine”

I’m trying to tell you something about my life
Maybe give me insight between black and white
The best thing you’ve ever done for me
Is to help me take my life less seriously, it’s only life after all
Well darkness has a hunger that’s insatiable
And lightness has a call that’s hard to hear
I wrap my fear around me like a blanket
I sailed my ship of safety till I sank it, I’m crawling on your shore.

I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountain
There’s more than one answer to these questions
pointing me in crooked line
The less I seek my source for some definitive
The closer I am to fine.

Check out this gem of the video!

I broke down as I listened to the words with my new perspective. People, there is so much I want to tell you about my experience with breast cancer but I’ve been so tired. I want to tell you about the brain fog and how I often feel like I’m outside my body when I’m having a conversation. My mouth moves faster than my brain and I can’t keep up. I want to tell you how it hurts so much when I hug my kids and they hit my port by accident. I want to tell you how I have no feeling in my “breasts” and how that makes me feel not entirely human. I want to tell you about the side effects of my HER2 drugs. How I need to be near a bathroom all the time and I’m really anxious when I’m not. How I am so physically exhausted from the infusions that even ten hours of sleep wouldn’t leave me feeling refreshed at all.
It’s easy to fall into a little despair pit, though. But I must remember that I am here. I am loved. And I can love. And that’s what the world needs. So I’m going to love on you guys so much in the hopes that we can make this crooked line a little more bearable and I hope you’ll do the same for others.
I will also work on being more patient and remember that I am a work in progress – currently in the midst of a renovation. One day in 2017 I will wake up and there will be no infusions, no surgeries and no doctor appointments in my calendar. And it is going to be so awesome!
I am closer to fine.
Love to you all.

#Thisisnotaboutyou (Part Two)

So I don’t really remember waking up from my mastectomy surgery. The first thing I remember is looking down at my bound chest with these little mounds. I had to keep them bound for a week until my first appointment my plastic surgeon. I also had four gross drains pinned to my compression bra. They looked like little grenades that filled up with blood and mucous from my surgery site. And I had to dump and measure the content throughout the day.

At my first appointment with Dr. Kulkharni, my plastic surgeon, I was thrilled to have two of my drains removed. My dear friend, Amy L., drove me to my appointments. When they remove your drains, they literally just pull the tubes out of your body. It doesn’t hurt but it is really bizarre to see these tubes just coming and coming and coming. They can sure fit a lot in there! This was also the first time I was able to see what had been hidden under my compression bra.

 

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Week One

 

There it was. These oddly shaped things that were supposed to resemble breasts. Incisions halved what once were my breasts while holding the remaining skin together. I was actually surprised by my lack of concern of what I saw before me. The phrase “I am a work in progress” was something I had begun repeating to myself post chemo.

At the time of my mastectomy, my plastic surgeon was there to immediately begin reconstruction. That’s why when I came out of surgery I was not completely flat. She placed an expander in each breast and filled each with about 300cc of saline. Each week I would need to come to her office for a pump up of 100cc of saline.

At the second appointment, my other two drains were finally removed! They are the worst part! They are awkward and anything you wear looks bumpy and are just generally gross. Having all of my drains removed meant I was also allowed to drive again!

 

 

 

So each week was further progress in my healing. Each week I would be pumped up with my 100cc and given valium to help ease the pain of my body having to make new skin as we created space for my new breasts. It hurt to be hugged. And the shape was awkward. They kept filling into my armpits and were pretty much flat across the front. On the upside, I haven’t worn a bra in weeks!

I’ve completed my saline fills and am happy with the estimated size I will be when I have my actual implants exchanged in November. But why share these photos? It’s not about you. It’s about sharing the unpretty side of what cancer has done to my body. It’s about normalizing it for other men and women who may someday find themselves in the same situation and it helps to know what to expect physically. Cancer sucks, ya’ll. But I will continue to be a work of progress. And for those of you who have to do this, I’m so sorry. But I promise you can do this. Be patient. Be kind to yourself. Love yourself. Let others love you. You are simply a work in progress.

Much love to you all. I am so thankful to be able to share this journey with you.

 

#Thisisnotaboutyou (Part One)

“Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring.”

Recently, a friend posted this fabulous article in the LA Times. I’ll wait why you go read it.

It has been 7 months since I was diagnosed. Yes, it’s a long time. And yes, I’m glad I’m done chemo. That was one of the hardest things I’ve ever done. And then coming in for a tie was my double breast mastectomy. Unless you’ve been in this situation, don’t compare it to any surgery you’ve ever heard of or had. It is not a gallstone or an appendix. This surgery makes childbirth look like a quick game of Candy Land. And I’ve had three babies.

It’s only been two weeks since my  bi-lateral mastectomy with auxiliary lymph node dissection on the right side. But before that I had to configure child care for three kids: age 20 months (today!) 5 and 7 for at least two weeks. I haven’t seen my daughter for two weeks and it makes me mad. Mad that this stupid cancer has taken away precious time with my family and that my summer is riddled with guilt that I have to rely on others to hold my babies. So before I get more ragey, I’ll get back to the day of surgery. (Insert Wayne World Memory Montage. – Damn it! YouTube is blocked in our house or I’d have included a link to a scene. Some people in our home have a YouTube problem that we needed to nip in the bud.)

Okay, so here’s the sunshine and puppies part! Joe and I arrived at the Suburban Hospital at 7am to sign in and head up for prep. We headed up to the 5th-floor waiting room and took a seat. Then this tiny little woman (after tripping and I felt bad) sat down and started eating a damn unripened peach. CRUNCH CRUNCH CRUNCH! What the hell, lady?! First of all, that sound makes me want to cause physical harm to people. This is totally a thing because not only do I have Breast Cancer but I also suffer from misophonia . I blame my parents. Ask them about the Rice Police. Second, this is a room where people haven’t eaten or had anything to drink since the day before and there you sit all fancy with your loud annoying peach. RUDE! I really thought typing that out would make me feel better. It didn’t. I’m now just as annoyed as I was then. And if you were wondering, I did let her live.

Finally, I get called back and am barraged with a bunch of questions about my health and whether I’m in an abusive relationship or not. Fun times. Then Joe is allowed back to join me. I meet one of my nurses who takes me down to Radiation Lab without Joe so I can get my nuclear medicine injected by four needles into my right breast. FYI: You don’t need the lidocaine shots. If you do, you are a complete idiot because then you’ve endured 8 shots. It’s kind of neat that because it’s a radioactive tracer that “lights up” any areas of cancer inside the breast.” Basically, my breast becomes a human light bright on the operating table. Pretty cool. On the way down in the elevator,  the nurses and I got to talking about paint colors and I suggested the one nurse try Balboa Mist for her new home. It looks taupe on the website but it’s really more like warm gray and I LOVE it! The other nurse mentioned she loves Benjamin Moore Paint. As you can tell, it was a thrilling elevator ride.

Also, my nuclear medicine nurse was having lunch that day with her best friend who she hadn’t seen in 35 years since she left India. I hope they had a great time. She seemed pretty excited.

Then it was back to the holding pen for patients while we waited for the doctors to visit. First up the anesthesiologist – he seemed nice enough and in retrospect, he did an excellent job because I only just remember smiling and being lifted onto the operating table and then waking up in the recovery room.

Then came my Plastic Surgeon, Dr. Kulharni. I love her and highly recommend her. She came in and did some lovely, very difficult to remove artwork on my breasts. Even Joe commented that she looked like an artist working on her masterpiece. I think we both flattered by that. Well done, Joe!

Then came Dr. Wright, who I also love,  to ensure everything was all set. Each person who came into the room made me describe to them in my own words what type of surgery I was having. In hindsight, I should have been more creative in my description. This must be why I wasn’t allowed coffee.

Then we got the call from the operating room letting us know it was game time. I received a sedative and don’t really even remember rolling through the halls. I remember entering the room, being placed on the operating table and then out I went.

But then I woke up and the drugs were awesome!

That’s all for now. More soon!

Much love to you all.

 

 

 

Well, that was awkward…

For six months I’ve known that I would be losing my breast. Off and on I would stop and think about it but it was such a foreign concept that it has been difficult to really wrap my brain around it. I think I’ve been pretty cool about it. People ask how I’m doing and usually, my response is something along the lines of “I’m fine. I mean I’m getting new ones!” And for the most part, that was a completely honest response. After all, they are my breasts and not my legs. They never worked anyway. I couldn’t even use them to feed my babies. It was heartbreaking.

Even working through my decision to have a double mastectomy I felt rather unfazed by the fact that I would be losing my breasts. And one by my own personal choice at that.

 

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Who knew these little guys could trigger so many of the feels? 

 

And then I went to Target today to pick up my medication that I will take after surgery. Valium and Percoset!? I should be a good time so please come visit. I digress…So I picked up my meds and headed to the makeup aisle to check out eyeshadow for my party this weekend. That’s where it happened. It was completely unexpected. There right in front of the L’Oreal section I began to sob. I couldn’t stop. I stood there as tears rolled down my face. I couldn’t move. I was embarrassed both by how public my tears were and how I allowed this enormous wave of sadness completely take me by surprise.

Is it normal to be sad about something like this? Of course. And I’ve been curious about how chill I’ve been about my impending surgery. That is, until today. So here I am standing with my little sack of feelings that I should probably do something with.  Until I’m ready I’m going to eat about half of the candy I bought for the pinata. That seems like the most rational thing to do.

Love to you all.

Should She Stay or Should She Go Now?

The last round of chemo was much like hitting the wall in a marathon. Your choice is to stop or push through and keep moving. I wanted to ignore all my side effects and pretend the end of chemo was in the infusion room. Instead, I spent time with my family and tried my best to keep ahead of my nausea meds. It’s really not fun to fall behind and suddenly find yourself looking for a decent place to let, for lack of a better term, let loose. Ewwww, I know, I know. Now you can’t stop thinking about it. Sorry.

Here. This will help distract you. These women are my heroes! Maryanne and Heather were my primary oncology nurses throughout Chemo. They are the nicest, smartest, most caring human beings on the planet. I love them. I’ve watched them care for patients with grace and courtesy. I’m glad I get to see them for a while longer for my HER2 treatments.

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Now if my oncologist (the amazing Dr. Hendricks) were to say I needed a seventh round of chemo, I’m not sure I would have been able to do it. Obviously, I would try but damn it would be hard. Even Dr. Hendricks said there’s a reason there are only 6 treatments. The body just can’t handle the stress beyond the prescribed six rounds.

IMG_2136.JPGBut here I am! Today I had my first HER2 infusion without the chemo. I chose to take the bag of Benadryl since I have had that with each round of chemo. And who doesn’t love a little nap in the middle of the day? Well, usually my infusions are about 6 hours. Today it was only about 90 minutes and boy did that Benadryl knock me on my ass. I was a sleepy space cadet until about 6:30pm. I won’t be doing that anymore!

Before my HER2 treatment, Joe and I made a visit to my plastic surgeon, Dr. Kulkarni. She’s been super supportive, realistic and honest in how I approach my reconstruction. Which brings me to my decision to have a double mastectomy in two weeks rather than just my right breast.

This was not a decision I have made lightly. And tonight Joe and I sat and seriously made a list of pros and cons. I’ve been contemplating having a double mastectomy for a few months now but I really needed to make a decision. My decision for a double is mostly based on peace of mind. Recently a friend who just wrapped up treatment found a lump in her other breast which required a biopsy. I don’t want to spend a minute more wondering if breast cancer will make its return. I do not want to undergo more chemo. Of course, there are some benefits as well. Huge thanks to Laurie Brown Kindred for spending walking me through her experience with this process.

My recovery will not be any longer. My risk of infection only goes up to 10% from 5%. Both of my breasts will look the same after reconstruction. I won’t need to wear a bra. And I won’t have the worry that cancer will rear its ugly head in my left breast. This is not an adventure I’d like to do again. So, there it is. I’m having a double mastectomy in two weeks. Guess I better change my invitation to my Ta Ta for Now Party. I also kind of want to rename my breasts, Thelma and Louise.

So off into the sunset, they will go. Thanks for the Mammories, ladies.

Love you all!

 

 

 

 

My Top Three #cancerperks…

As a counter to all things that suck about Cancer, I offer you my three favorite #cancerperks. Just so we’re all clear, I would happily trade all of these things in if it meant my cancer would just go away.

  1. Temporary Handicap tag!

    Not having to walk the extra steps means I can actually get my shopping done without having to sit down. Also, it means I don’t have to fight club anyone at our pool for a spot! I also don’t have to pay parking meters and get twice as much time. Do I have any shame about using my tag? Hell to the no. I’m living it up till September 29th when it expires.

  2. Bad puns! 1I adore bad puns. And, in my world, there is nothing better than throwing an event that revolves around bad puns. Don’t forget to RSVP!
  3. The Cancer Card. 13055497_10153474550615143_5374038299223592248_n.jpgUse it if you got it. Linsday and Jenny made me an actual Cancer Card. Don’t want to do the dishes? Cancer Card. Don’t want to go to the event? Cancer Card. The downside is that the Cancer Card does not work when you really want to do something but just can’t must the energy to make it happen. Even something simple like doing the dishes.

    Love you all!

Cancer is…

Cancer is lonely. You can be surrounded by friends and family and feel love so deeply that you think you might explode, but at the end of the day, you are the only one who can get you through this.

Cancer is exhausting. Even with people offering help at every turn, you’ll long to keep up with your life. It’s like starting a race and suddenly you are running in slow motion and while you are busting your ass to keep up everyone is running at full-speed right past you.

Cancer is expensive. Putting aside the actual cost of chemo and surgery there are the endless co-pays, childcare, parking, medicine (oh, so much medicine), take out, housekeeping, mowing… You won’t have the energy to care for the simple things so you learn where to spend your energy. If mowing your yard yourself is your jam, go for it. We have Edwin. I suggest not looking at your bank statement or credit card bill. Or have a glass of wine (or eight) before you do.

Cancer is a giant time suck. It never ends. It is a full-time job.  The appointments, the treatments, the recovery, and just the mental space cancer requires, you’ll find a little time where you don’t feel touched by the beast. Enjoy those moments.

Cancer is…wait, what was I saying? It’ll start off as funny how you can’t remember this or that. It’s less funny when you really need to function and your brain won’t let you. You’ll work really hard to listen to a conversation only to completely forget what was said moments later. I can only liken it to the frustration people suffering from Alzheimer’s must feel. So, go ahead and tell me your deepest, darkest secrets because it’s pretty likely that I won’t remember.

Cancer is a lot of things but it is not fun and it is definitely not the color pink. Of course, it’s not all horrible either. Stay tuned for my upcoming post, #CancerPerks.

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