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. 

Mom, the Alien

Here is how the last 30 minutes went in my house:

Me: Honey, I need you to take pictures of my head, so I can document my weekly hair growth.
Tony: Ok.....(with a weird look on his face.)

We started with the digital camera.

Tony: This is the best I can get.
Me: OMG. Is that what my head really looks like? The top has no hair at all? That's horrible. It's so ugly. By the way, I need a picture of my eyes too, so I can see my eyelashes.

We upload the photos and they really are hideous. I even debated on whether or not I should put these on the Internet for all to see. I ask Tony if he can use Photoshop to make them look better. He modifies them a little bit as the kids walk into the office.

Matthew: (looking at the picture of my head) Ewww...gross.
Tony: It's not nice to say that, Matthew.
Matthew: I thought it was an alien. I didn't know that was mom.

So, Tony decides we'd better use the DSLR to get a better shot. I was still not happy with the pictures, but he said that's what my head really looks like and there wasn't anything he could do to change that. I tried to Photoshop them myself, but nothing worked. So I present you with these unedited pictures of my spotted head and eyes with pokey lashes. The second picture almost looks as if I have eyebrows. But it's really just where they used to be. I hope to see some improvement over the next few weeks.

This weekend, I've been feeling pretty run down. It could be that Peyton and her cousins are all sick, and I could have caught a virus from them. My whole body was achy today, to the point where I could barely walk. I rested all day and it helped a lot, but it's back to work tomorrow. Report cards are due, and conferences are the following week. So there's no time to slow down and take a break.

On another work related note, my coworkers are absolutely wonderful. They spoke with the district and set up a bank where people could donate their sick days to me. Although chemo has ended, they are encouraging me to use those donated days to take at least one day a week off until the end of the school year. I think I will start doing that after conference week. An extra day off each week will help my body recuperate sooner. I just need to relinquish control and let others help me. That's been the hardest part so far. Asking for help and also accepting it. Sometimes, I think I'm invincible and I can do it all. Then I realize that I'm mortal, all too mortal for that matter. But let's save the subject of mortality for another post, shall we?

Words on My Last Chemo: Bittersweet

Here I am, on the night of my last chemo treatment. Sitting at the kitchen table, on my iPad, drinking coffee with pumpkin spice creamer, listening to the Enya channel on Pandora, with a Marshmallow Fireside scented candle burning away. Oh, and don't forget the jars of fresh flowers. Lovely. Can you imagine it? It looks like this:

So serene. So peaceful. I think I'm ready to meditate. I close my eyes for a few seconds and savor this moment. It's the small things, you know. That's all that really matters. A hug from a friend. A smile from a stranger. Brushing Peyton's hair. Watching Matthew dance. Staring at my husband without him knowing. Thinking about nothing and everything, all at the same moment.

I had a hard time sleeping last night because I had mixed feelings about today. It's a huge milestone, and I should be jumping for joy. Instead, I am sad and you can say, even a little depressed. My security blanket is gone. I found comfort in going to chemo every Friday. Today marked my 20th treatment since June. There was no gradual weaning process. It seemed too abrupt, kind of unfair to be honest. Going to chemo meant I was actively doing something to fight the disease. Not going means I'm venturing into unknown territory. The unpredictability of the future scares me. Not being in control of my life scares me. But my nurse reassured me that I have done and will do all that I can, and that is the best that I can do for myself. Bittersweet.

The nurses put a crown on me to celebrate my last treatment.

 

Close my eyes. Savor the moment. The music, the candle, a sip of coffee, and a smile slowly spreads across my face.

I love my friends. M and D surprised me this morning with balloons, flowers, and some very thoughtful gifts. They gave me Mentos (my fav candy), bobby pins, and hair clips! How I hope to be able to use them soon. After dinner, my brother and sister in law surprised me with a cake to celebrate this momentous day. Delish. Thank you guys for making today a special one. 

 

Remember. It's the small things. Laughing when Mace continuously tried to pinch my neck. Trying relentlessly to get a kiss from Airi. My dad giving me a kiss when he first saw my bald head. The way my mom carries Peyton out of the car every morning. The way Matthew walks down the steps at school. The way my sister fixes her bangs.  My brother in law and sis in law visiting and bringing me my fav drink from Ten Ren's. Tony washing dishes and telling me he doesn't need help. How M comes in my class every morning to ask how I'm doing. How D texts me every week to check on my health. The way my brother plays with the kids. The way my sister in law takes care of Matthew and Peyton. The way Emi smiles. How my cousin, Tai, is growing out his hair to donate it. I have to remind myself of the small things in life that make me happy. I have to write these things down because I don't want to forget. Ever. 

I can't wait to see my childhood best friend. She will be visiting us this weekend, along with her husband and two kids. They live in Texas and I have never met her children. The last time we saw each other, Matthew was probably about 2 months old. I'm very excited about her stay with us!! 

Whose idea was it to drink coffee at 10 pm? I guess I can catch up on some Jersey Shore. Can't wait to see the bar fight. The small things, ya know.