Deflated, Lopsided, and Flat

Blogger world, I think about you often. Very often. But I'm just too lazy to get on the computer and start writing. You know, these posts take me a really long time to draft. So much has been going on since the last update. I have a visit with my plastic surgeon today to deflate my right side, the non-cancerous side. Why you ask? Let's rewind a bit.

Since my last update, I was fully expanded on both sides. Then a week later, I had to deflate my left side to prepare for radiation. Now that was quite an experience. I was hooked up to a tube that led to a sucking machine on the wall. The machine was connected to a huge measuring cup. When the machine was turned on, the saline was sucked out of the expander and into the cup. The whole process took about 30 minutes and a total of almost 400 cc's was extracted. The end result was scary. I thought that my extra skin would just sag, but it didn't. My left foob (fake boob) was left to resemble a crater, with the outer edges being the expander. It isn't pretty. Now I'm completely lopsided and I have to stuff my bra to be somewhat even.

Fast forward to yesterday. I had my CT planning appointment, which is designed to set me up for radiation. Basically, it's a CAT scan of my chest wall to determine where the rays are going to hit each time I go for radiation. I would also leave with red marks and dots on my chest so they know where to put my tattoos at the next appointment. After I got the scan, I was told that my right side was interfering with the angle of the beams. Which means I have to deflate it. Seriously? Luckily, I already had a scheduled appointment with my plastic surgeon today that I didn't originally need, and they had a cancellation this afternoon for another CT planning. So I'm back on schedule. But still, seriously? You might be wondering, like Tony was, what happens if someone had a real boob that got in the way? Well, real boobs are squishy and when one lies down, they fall to the sides. A foob with expanders in them stays in the same exact position whether one is standing or lying down. They are hard as a rock and they don't move at all. I'm sure my plastic surgeon will be less than enthused about this dilemma, but I have no other options. On the brighter side, I don't have to stuff my bra anymore. Equally flat on both sides.

I've been on the fence about my hair lately. It's getting a little out of control, especially around the ears. When I wake up in the morning, it is a lot out of control. There are cowlicks everywhere. What should I do??? I'm so scared to get my first post chemo haircut. It still seems so short. I also want to color it something fun to fool people that I actually want my hair to look like this. As if it was cut short on purpose. Charlize Theron style. You know, the artsy type that I am totally NOT.

Nipple-Less

I've been MIA for a few weeks. Sorry about that. It's been about two and a half weeks since my surgery, and I am still not fully functional. I'm still taking pain meds 'round the clock. I've been reading a lot of blogs and forums about other women's experiences with their mastectomies. It seems like most women recover quickly and are in minimal pain. What is wrong with me?? I usually bounce back quickly from surgery, but this time, I got my butt kicked. Big time.

What I had was a bilateral mastectomy and immediate reconstruction. The surgeon removed both breasts, nipples and all, then inserted expanders under my muscle. He also put either 240 or 260 cc's of saline in each expander; I can't remember the exact amount. The purpose of the expander is to stretch the skin to the desirable size and then replace them with permanent silicone implants in the future. Each week, I go in for a fill. Last week was my first fill of 60 cc's in each side. I can't say that the procedure was painful; it was definitely uncomfortable though. However, the day following the fill, I was in excruciating pain and had to ask my oncologist for a stronger painkiller. The new drug I was prescribed is like a legal narcotic, and it really messed with my head so I stopped taking it.

My next fill is tomorrow and I am not looking forward to it at all. My skin is peeling from being stretched so much. I don't know how it's going to react to radiation in this condition. As the title of this post states, I am without nipples. It's sad to look at two rock hard mounds, each with a 3-4 inch lateral scar. I desperately want this whole journey to be over with. I'm tired of seeing doctors every week, and I'm tired of all the surgeries. I want my life back already!

The small syringe was used to numb the skin, and the big ones were used to inject saline into each expander.  And to think, some women get more than 60 cc's at each fill! Ouch!

It's been 3 1/2 months since my last chemo. When will my hair be long enough to style, so I don't look like a boy??

Bye-Bye, Bon Bons

That's what Peyton calls them. Bon bons. Twas the night before my double mastectomy and how do I feel? Anxious, mostly. Have I told you how much I hate getting an IV? Remember how the nurses laughed at me because they couldn't find my vein? Sleep has not been my friend these last few days. Last night, I dreamt that I was late to my surgery. No matter what I did, I just couldn't get there.

The one thing that is different about tomorrow's surgery is that I had time. I was only given one week notice for my lumpectomies. I had over a month's notice for this one. What does that mean? Time to plan, organize, clean, and above all, be anxious.

The kids have been asking about my surgery. I have no idea how to explain to them that my old bon bons were bad, so the doctor has to remove them and give me new ones. So, I just said that the doctor wants to make me all better. Of course, that is an unsatisfactory response for Matthew. Too simple of an answer. In his eyes and Peyton's as well, I'm not sick. Why visit the doctor when I'm not sick? Makes perfect sense, right? I love the innocent and untainted minds of children.

I'm glad that my surgery is at 7:30 am. Being the first case means the doctor can't run behind and make me wait. Because that would suck. Waiting sucks. I feel bad that Tony has to wait for the surgeon to come out and tell him that everything went fine. Then he has to wait until I wake up before they even let him see me.

Well, I have a big day ahead of me, and I still need to finish some laundry and pack for the hospital. New, cancer free bon bons, here I come!

 Enough hair to go hat-less in public? 

New Year, New Me

Wow, it's been awhile. I've thought about blogging so many times over the past few weeks, but I just haven't had the energy to do it. Now that the holidays are over, I need to get back on the wagon. Christmas was absolutely wonderful this year. So many unforgettable memories were made. When I was first diagnosed, I was deeply scared that this would be the last Christmas spent with my friends and family. My outlook on life has changed so much these past few months. I first went through shock, then denial, and finally acceptance. I'm learning to document my life with more photos, videos, and journaling. I don't want any special moments to be forgotten.

My double mastectomy is scheduled to be on January 18. I'm trying to prepare for it by organizing the house like crazy. Since my recovery will be at least 3 weeks, I want to make sure that things are in order. After my recovery, I will be getting radiation daily for 5 weeks. I anticipate being on medical leave for at least two months, which means I need to get my long term sub ready. Just another thing that I need to take care of. It is not easy to prepare a complete stranger to take over your classroom for a long period of time.

The plastic surgeon I met with came highly recommended by a friend of mine. He estimates that my whole reconstruction process will take about two years. Radiation complicates things because it ruins your skin. He says that he will need to use my latissimus dorsi muscle and skin from my back to help create new breasts. This will be in addition to implants. I was bummed that he couldn't use my stomach fat! I really do have excess tummy fat and skin, just not enough to make new breasts. Bummer. All of the additional surgeries will take place after radiation and after my skin has been fully expanded. A day after the mastectomy, I will leave the hospital with expanders and drains.

So the anticipation is building. I'm trying to keep busy to avoid freaking out about this whole thing. Because I am really freaking out. This is not my first surgery, but it's a major one that will leave my body deformed for awhile.

Since I'm typing in bed right now, it's too dark to take any pictures. I will post an updated one soon. Happy New Year, everyone! May 2013 be an amazing year full of love and happiness! 2012 sucked for me, so I'm looking forward to new beginnings!

My New Norm

*Double sigh.* When a post starts like this, something's gotta be up, right? Well, I guess I can start by saying that my hair is growing back! It looks and feels like peach fuzz! Now THAT is definitely something to celebrate.

On to the *double sigh." I've had an insanely busy day, and I wasn't even at work today. It started with Matthew's trimester awards assembly. I dropped him off at child care and graded papers in the car, while waiting for the assembly to start. Once it was over, I rushed over to the post office to mail out Christmas cards (early for once). Then I headed to Ontario for my appointment with the radiation oncologist. Let's say that I should have brought Tony with me. I really needed an extra ear or two to decipher through all the medical terminology.

Dr. Ong is my radiation oncologist. She is caring and attentive. I was impressed that she knew so much about me and my cancer before I even met her. Days before this appointment, she met with her team of oncologists so they could review my chart and discuss the best treatment for me. Dr. Ong pulled up my pathology reports and went through each finding thoroughly with me, making sure that I understood where my cancer started, what it looked like, how it acted. I felt like I was being diagnosed all over again. Sure, I knew that I had the most aggressive, invasive kind. Invasive ductal carcinoma, grade 3. Tumor size 1.4 cm. Two positive lymph nodes. But I wasn't aware that they found some in my blood vessels. Lymph-vascular invasion present. All of these risk factors, combined with my young age and BRCA+, made me a good candidate for radiation.

She also pointed out that I'm triple-negative. If you google triple-negative breast cancers, you will quickly find that it is not a good thing. That means that Herceptin (used to treat Her2+ patients) and hormone blockers cannot be used against my cancer cells (although I am taking Tamoxifen). Chemotherapy is most effective for triple-negative breast cancers. I told her that my oncologist had my sample tested twice and both times, it came back as progesterone positive (2-3%). She said that number is so low, it's practically negative.

She then drew pictures of where the radiation beams will be hitting my body, all while explaining the possible side effects. Partially radiated lung. Higher risk of lympedema, which might involve physical therapy. Messed up skin. Tattoo marks where the beams will hit. My mind ventured off a few times because it was too much information. All of this talk about cancer again was bringing me down. I was just starting to feel good too, almost back to being myself.

Finally, she recommended that I get the bilateral mastectomy before the hysterectomy. She wants me to start radiation soon after the surgery and waiting until February or March is apparently not acceptable.  Because we need to continue treatment for the cancer, the hysterectomy can wait. Makes sense, I suppose.

I left the hospital in pretty low spirits. I'm not mentally prepared to do this.

The next few hours were spent shopping for toys, toys, toys. It wasn't even fun. I was by myself and I couldn't make decisions. I suck.

The last part of my day was spent at the endodontist getting a root canal. Yeah, I really did ask him, "How do I know if I'm numb enough?" He just laughed. Never met anyone like me, huh, doc? Today ended with one last visit to Kaiser pharmacy for antibiotics.

All this, in one day. It must be my new normal. Because crazy days like this are happening more often than not.

1 Month Post Chemo

I had been looking forward to my one month check up for a while now. I actually took the entire day off, thanks to a wonderful sub that offered me a free sub day. I ran a ton of errands in the morning, then met Tony at home for lunch.

It felt really weird to drive to Kaiser, being that it's been 4 weeks since our last weekly visit. I was sad when I checked in because it was not the same lady that I'm used to seeing. It was some strange guy sitting at her desk! I made such a big stink about it that Tony finally said she's probably on vacation and all of her teddy bears are still on her desk, so she still works there! Then we noticed that someone taped an arrow pointing to the elevator button because people have such a hard time finding it. I told Tony that there were just too many changes in only 4 weeks. How come those little changes affected me so much that day? I still can't figure it out. I mean, I was upset that we didn't take a picture of the stupid arrow made out of tape! That was just the beginning.

I felt really sad as I was walking down the hallway to my oncologist. We had to walk right past the chemo suite. Even Tony, who is not normally bothered by much, felt an odd sense of remembrance.

Anyhow, Dr. Chan referred me to a radiation oncologist to discuss the possibility of me needing radiation. I asked for the best one and his response was that they were all up-to-date. I said I'm sure they are, but I'd like to see the best one. He avoided my question and said that I'd see the technicians more than the doctor.

The big news this time is that I was prescribed Tamoxifen, a hormone blocker. I've read a lot about it, so I'm very familiar with the side effects. See, Tamoxifen is usually prescribed for people whose cancers feed off of the hormones estrogen and progesterone. I was estrogen negative and very slightly progesterone positive (2-3%). Studies have not shown that Tamoxifen is beneficial to people like me, but he wanted me to try it anyways. It is a five year commitment. The side effects are menopausal symptoms, such as hot flashes and mood swings. In addition to all that, muscle and joint aches can be a problem as well. I told him that all of those things will happen to me anyway because of my upcoming hysterectomy and oopherectomy. He agreed, but said that Tamoxifen would be intensify them. He also said that if my quality of life is severely affected by the Tamoxifen, I can refuse to continue it. I see him again in two months for a follow up. So far, Tamoxifen is a thumbs down for me. A daily pill that makes me feel like crap. No thanks. But I will take it and make a final decision in two months.

Here are some questions that I had prepared for him:

Me: Can I go to the dentist?
Answer: Yes, now that you are done with chemo.

Me: Can I tattoo my eyebrows? I mean, I know I can get double eyebrows if they grow back in a different spot, but it really stinks to draw fake eyebrows in EVERY morning. Sometimes, it takes 20 minutes to make them look the same!
Answer: Um, sure.

Me: Is there a special shampoo that will make my hair grow back faster?
Answer: No.

Me: But if there WAS a special shampoo, can I use it?
Answer: Um, sure.

Me: Are the Tamoxifen pills like huge horse pills?
Answer: No. (insert funny face here)
Tony (who never says anything during my visits): They're just regular horse pills.

Dr. Chan must think that I am so vain, which I admit to being, but come on now, wouldn't you have wanted to know those things? Well, maybe not the eyebrow thing, because that's just vanity speaking right there.

So...because he gave me permission to visit the dentist, I called as soon as I got into the car. They squeezed me in the following day. Turns out I need a root canal! Boo-hoo. Seriously??

*Sigh* Well, the good news is I have this entire week off from work. I will be having minor surgery on Wednesday to remove my port. Not looking forward to being awake while Dr. Morton opens the incision to pull the catheter out. I heard they superglue the incision back. To be honest, I'm scared!

Next Thursday, I meet with my radiation oncologist AND the endodontist for my root canal. Wish me luck.

No eyebrows. See what I mean, people? You would ask too.

Happy Thanksgiving, everyone!! XOXO

Mortality and Death

Today's topic is not meant to be morbid at all. It's just that these issues arise when you have been diagnosed with a life threatening disease. It doesn't help that I recently read a book narrated by Death himself. A great read, by the way. It's called The Book Thief, for those of you that might be interested.

For most of my life, I always thought that I'd live to a ripe old age. Not that I still won't or can't. Matter of fact, I think most people imagine themselves living until pretty much forever. Then something like cancer enters their life, and boom, they realize that they are mortal. TOO mortal. Here is a story I'd like to share:

Matthew has been learning about bats at school as part of an October unit. His class read the story Stellaluna, which is about a bat that lost his mom. One of the questions he had to answer was, "What would you have done if you were Stellaluna and had been separated from your mom?" His written reply, "I would have tried to find a new mom." I wanted to cry at my son's innocent response to such a simple question. Because, of course, to me, that answer holds a much deeper meaning. Kids are resilient, yes, I know that. But how much would my children remember me, at 4 and 6, if they were "separated" from me? I would want them to remember me, but I'd also want their lives to continue normally. I would want them to find a new mom. Matthew recently said that you don't need the person to physically be there because they will always be in your heart and in your brain. Spoken from the true mind of a six year old. 

We are all mortal. Every single one of us. Knowing that is the easy part. Accepting that is the hard part.