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.

Taxol Side effects

I keep forgetting to list my side effects. Now I'm not one to complain, but if you ask me how I am doing or feeling, I will be completely honest. I feel run down and TIRED. My body aches everywhere. Peyton is pretty rough and it actually hurts when she tries to hug me really hard. Every week, the nurses run through a standard list of side effects. I usually answer none to mild for every question, but lately, I've been saying mild to moderate. Especially for fatigue and pain. It's pretty pathetic when I lose my breath just walking from my car to my classroom.

The neuropathy has also been an issue. My left toes are tingly and it hasn't gone away since last week. I have neuropathy in the tips of my fingers too. The oncologist classified it as a grade 1, which is very mild. He said at this point in time, he is not going to change the dosage of my last two treatments. If I had developed it earlier, he might've reconsidered. The nurse in the chemo suite was worried and she wanted me to inform them if it got any worse. But I know my oncologist is adamant about getting me to the finish line. My fingernails also hurt really bad. Not only are they gross to look at, but I have a hard time using my fingers to open things. 

I've heard the side effects can last for months after treatment. Let's hope that's not going to happen here.

Say what? Two more???

Anticlimactic. That's the word I used with my oncologist to describe my last chemo treatment. Since June, my life has consisted of weekly blood tests, chemo, and an overall tired, beat up feeling. With my last chemo scheduled for next Friday, it will be so weird to have my life almost back to normal again. Will there be a party in the chemo suite? Should I bring cupcakes and cookies for all the wonderful nurses? How will I celebrate? The answer is, I probably won't celebrate. It will be like any other Friday. When the machine beeps, I will walk out of there and wish all of the nurses a great weekend. Only this time, I will not say see you next week. I will keep walking and hope never to come back.

I received a reply from the surgeon that will be doing my hysterectomy. She wants me to take a 2-3 month break after chemo before I go back into surgery. I was really hoping to get it done at Thanksgiving break, but now it looks like January. The bright side is I will get to enjoy the holidays, hopefully with some hair to keep my head warm!

On the hair note, hmmm...I am very anxious to see it grow back. I have some new hair growth, but most of it is WHITE! Peyton keeps trying to pick at it, saying that I have string stuck on my head. When I told her that it was hair, she called me an old lady. Of course, to her, only old ladies have white hair. My eyebrows are 98% gone. There are exactly 2 strands on my left side and 5 on my right side. My eyelashes are about 95% gone. Actually, I see lots of stubby roots if I look closely enough in the mirror, like it's trying to grow back. My nose hairs are 100% gone. All of it. Who knew those little nose hairs were so effective at keeping runny noses at bay. With no more nose hairs, my nose runs all the time. Ick.

Until next time friends. Here is to feeling better soon!

Call Me Crazy

Wow, I can't believe how long it's been since I last blogged. I apologize to those who have been checking my blog, only to see that it hasn't been updated. Where do I begin?

I guess we can start with the known fact that yes, we've moved again. Crazy, you ask? No, I don't do crazy things like that. It's only the beginning of the school year, right in the middle of all my weekly chemo treatments. Adding a whole house move in the mix of it all would be insane. Insane!!

About mid August, I realized that my daily commute to work and getting the kids to where they need to be each morning was kicking my butt. I did two drop-offs last year as well, but cancer wasn't in the picture last year. Heck, I even enjoyed the commute. This year, I was really struggling to make it to work on time each day. Tony and I discussed possibly moving to the north Fontana area to be closer to my work, my parents, my brother, and to his brother.  The only con about this whole ordeal would be adding 30 minutes to Tony's daily commute. That's 30 minutes to an already hourly commute each way. However, in the long run, it is the best decision for our family, considering this journey is not over yet. Not even close. I have two major surgeries coming up in the next few months and I will need all the help I can get.

So, have we settled in yet? Nope. We still have things in boxes, but I can finally park in the garage. Tony scooted everything to the side so my car can fit. It doesn't feel like home. Coming home from work exhausted, then helping Matthew with his homework, dinner, baths, etc. You all know how it goes. Life gets in the way of unpacking and settling in. I need a day. Maybe two. Maybe three. Just to sit. Maybe lie down for a while. Maybe fold laundry. Or grocery shop. Or take a nice bath. Unpack some boxes. Think about life. Blog a bit. Catch up with friends. Or even forget about cancer. If only for a moment. I need a moment to breathe.

It's a Small World

Waking up from Benadryl, I look across the chemo suite and notice a woman that looks faintly familiar. It just can't be. No way. Not in a million years. A parent? Here? Getting chemo at the same time as me?  I get up to go to the bathroom and stop by her recliner. I jump right in and groggily say, "Ms. M...?" She looks at me, confused, and says, "Yes, that was my maiden name." "I was your daughter's teacher, Miss Vo, at the time." Her reply, "Oh my gosh." I proceed to the bathroom and come back to sit with her. We catch up with each other, both hooked up to machines dripping medicine into our ports. What a sight the two of us were. The nurses laughed and said, "You found a buddy?" What a small world. I had her daughter in my class about 9 years ago.

Here is her story: Two years ago, she was diagnosed with Stage 3 breast cancer. After having a mastectomy and two months after finishing chemo, she was told that the cancer had spread into her bones. When she had her surgery, 4 lymph nodes were removed, all of which were clean. How could this have happened? How did the cancer spread when the nodes were clean? No answer there. The doctors are now just managing her disease. She said it is not curable. I guess one is never cured of cancer. All of the nurses in the unit know and love her. After all, she has been going there for 2 years now.

I was so confident that after chemo and maybe radiation, then surgery, that I'd be free of this disease. Clean. But after that somber conversation, I realize that things aren't so certain anymore. I'm actually a little freaked out over a hard area that I found on my left chest, slightly above my first incision. I hope it's only internal scar tissue, but I'm anxious to ask the onc about it on Friday. Any odd changes in my body are more noticeable now, and I lose sleep over it. Especially when it is a hard lump.

 

Here I am on a Sunday morning, no makeup to smooth my skin, brighten my cheeks, or give me eyebrows. Just plain ol' me with a little help from Instagram. Have a great week, friends. 

Zzzzzz....

If I close my eyes right now, I will fall asleep right here at the computer. I am totally exhausted. The extreme temperatures are not helping at all. My Back to School Night was yesterday and I didn't get home until 8 pm. School events are always so stressful. I have to pick up the kids, then meet Tony at my mom's so we can trade cars. He takes the kids home first, while I rush back to school and eat my dinner before the madness begins. It's always a time crunch. All in all though, I had a wonderful turnout. My new teaching partner gave me a turban that I wore last night and it received a lot of compliments! Something different from the scarves that I've been wearing.

What I'm about to say is so pathetic, I'm embarrassed to admit it. August 14th, our wedding anniversary, came and went without either of us remembering the special occasion. It hit me the next day that we both totally forgot about it. How sad, huh? I had mentioned to Tony a few weeks ago that we should go out to dinner to celebrate, but when the day came, we treated it like any other school night. Dinner. Homework. Baths. Pick out clothes. Sleep. Is it possible that we both have chemo brain???

Taxol #3 is tomorrow. Last week, I got some funky muscle aches, but it went away within a few days. Thank goodness. Oh yeah, my brows and lashes are starting to go...I find lashes in my eyes every time I wash my face now. I knew I should've tattooed my eyebrows before I started chemo. Next time you see me, don't look too closely at my brows. Brow powder doesn't look like real hair.

A message to the BRCA1 gene mutation. @&%* you. I hate everything about you.

Taxol #1

Oh, chemo...how I hate you so. So here is how Friday went:

I left early from work to meet Tony at home. I scarfed down a sandwich in the car, as we were running a little late. I met with my onc first to discuss possible side effects. The biggest thing to watch out for this time is neuropathy. Half of the people receiving this medicine will not get any at all. The other half might get various degrees of it, some lasting forever. Although I will be getting chemo every week, I only have to see him every three weeks. He shared with us that he will be on vacation soon and that he's doing a timeshare thing! Wow, I really did not know that even an oncologist finds a way to visit Hawaii the cheap way. Don't they just book the Ritz and call it a day? Student loans gotcha, huh?

Anyways, we didn't get a private room this time. The chemo suite smelled really bad too, like...chemo. It makes me queasy just thinking about it. So, I got three pre-meds: Pepcid, Decadron, and the dreaded Benadryl. They are not in pill form (like with AC). Each one is a separate bag and it goes through my port, immediately into my body. She gave me the Benadryl first, so it would wear off. Before the drip started, Tony went to get coffee and by the time he got back, I was slurring my words so badly, I couldn't even communicate. It felt like the moment before surgery when the anesthesiologist gives you sleep medicine. I was super out of it, but I couldn't sleep. Once the Benadryl wore off a bit, I was able to get some work done (had to prepare for the 1st day of school).

Finally, the nurse started the Taxol-only after giving me 15 minutes of a "test" to make sure I didn't have an allergic reaction to it. The rest of the Taxol was given over an hour. By the time I finished, it was about 5:00. I was there at 1:40. There goes my Friday.

Ahhh....Monday was the first day of school. I felt almost 100% Monday morning. Just a bit tired, but who doesn't lose sleep the night before the first day of school, right? Yes, it's my 11th year, but I still get nervous. Every single time. Especially this year when I knew I had to explain why my head was covered. I know I've mentioned this before, but it's sooooo hard to match my clothes with my hats and scarves! Ugh. With this horrible heat wave, I should just go bald. Ha!

I sent home a sealed letter to parents letting them know about my diagnosis and treatment schedule. I also asked parents to speak to their children about cancer before we have an open discussion at school. Today, I spoke to my students about it and it went really well. Some of the kids were really sweet...saying they were sorry and they hoped that I feel better. Another one said she had a neighbor that died from breast cancer. Nice...thanks, but that's not going to happen with me. I told them we are going to party like no other when I start getting some fuzz on my head.

Friday is almost here again. *Sigh* I guess it just means that the next 11 weeks will fly by, right?

Matthew's first day of 1st grade

I got a major headache after the Benadryl drip.

Almost Forgot

I have been feeling so great these last few weeks that I almost forgot about the stupid cancer. No shots, no blood tests, no treatments...until tomorrow. I miscalculated the dates and it turns out that my first treatment of Taxol is actually this Friday, not next. This means that I have to get my blood drawn tomorrow, and it also means that I might not feel well on Monday, the first day of school. Boo.

My hair is also starting to grow a tiny, tiny little bit. Not enough to be noticeable to most, but I can feel the stubble. Peyton likes to rub my head before she falls asleep. Of course, one of the side effects of Taxol is hair loss. Another possible side effect is bone and joint pain and neuropathy. Lucky me. At least this time, the onc said that I won't need Neupogen shots.

I forgot to mention that I asked my onc about radiation. I was told early on by my breast surgeon that if I got a bilateral mastectomy, I will not need radiation. However, my onc said that I will need to see a radiation oncologist after chemo, who will then make the determination. A few years back, if someone had less than 3 positive lymph nodes, radiation was not necessary. Maybe things have changed. I had 2 positive nodes, out of the 17 removed. I hear that radiation is not as hard as chemo, but it requires a daily commitment. I am hoping that I will not need it.

Vacation

I've been on vacation from chemotherapy these last two weeks and it's been so nice. I'm feeling great and life almost seems normal again. Tony took a week off from work last week and we went on a mini vacation to Santa Barbara. It was our first visit there and we loved everything about it. We visited all the tourist attractions. While Tony and I loved the mission, the beautiful courthouse, and all the Spanish architecture, the kids only cared about the hotel and getting to feed the ducks there. Peyton's favorite thing was the gift shop at the Natural History Museum. It's ironic she would pick the museum because she was practically scared of all the exhibits. She only liked the gift shop because she bought butterfly tattoos there. Matthew...not so sure yet. He says that he didn't really like anything except feeding the ducks, but it seemed like he had loads of fun. They sure were anxious to go home though.

I'm going back to work tomorrow, although the students are not starting until the following Monday. I'm sad because I really didn't have much of a summer. Most of my time was spent lying on the couch and not worrying about covering my head. I wore hats when I went out for short periods of time. Now I have the dilemma of finding head coverings for every day of the week. I thought about wearing a wig to work and not telling my students, but the wig thing just didn't work out. I obsessed over it and in the end, decided that I didn't want to waste money on something I knew I wouldn't wear. I have two wigs and both look totally fake. I've been pretty comfortable wearing scarves. I know this sounds stupid, but I saw recent pics of Jennifer Lopez in some pretty scarves. She tied all of her hair into the scarf and wrapped it into a bun. It looked great on her, so I decided to try it. I love the look, but can I tell you that it is so hard to match a colorful scarf to your outfit? I pretty much have to stick to solid colored clothes, otherwise everything will clash. Oh, the stress of it all. And what do I tell my students? I'm just afraid that parents will doubt my ability to teach if they know what I'm going through. I figure I'll just tell the kids that I lost my hair due to some medicine I'm taking. Most will probably figure it out. I'm not in denial, I just don't know how a teacher tells her brand new, bright-eyed students that she is fighting cancer. As a kid, I'm sure I'd be scared to hear that about my teacher and the last thing I want to do is scare my sixth graders. They're already so nervous about middle school. *Sigh* I know I will be losing sleep over this...

Here are some pictures from our last minute vacation.

I found this place on yelp and it serves some pretty amazing coffee. We had it two days in a row. Too bad the Inland Empire lacks a great coffee house like this one. 

We rented a surrey and biked along the ocean. The views were stunning, but I was very sore the following day!

Mc Connell's has the best ice cream ever. Lots of famous people have visited this little ice cream shop, including  several presidents!

Exploring downtown, while enjoying a French Press coffee!

Looks like he's having fun here!

We tried this place on State St. the first night we were there. It was featured on the Food Network by Guy Fieri in Diners, Drive-In's, and Dives. We were not impressed by the fish and chips at all.

Here, we were waiting in front of the zoo for the trolley to pick us up. 

Toenail, gone!

Before I go into the details of my last treatment, I want to start by saying that my fingernails have been discolored due to the chemo. I'm not sure about my toenails because there is nail polish on them. Well, anyhow, Peyton backed up onto my toenail today at the store, and wham! It cracked in half and started bleeding. I was so mad! It was a total accident, but that girl is pretty aggressive and she doesn't know her own strength. So now I'm wondering if my toenails are funky and weak from the chemo. How else would it have cracked so easily? I bandaged it up and I'm sure it will fall off any day now. So gross.

Not only are my nails discolored, my tongue has black spots on it. I've developed a few mouth sores, a prominent one right on the tip of my tongue. I can barely talk. The nurse gave me an RX yesterday that should help with the mouth sores.

Ahhhh....the last of the red devil was administered yesterday. It feels so good to say that I am done with this more aggressive regimen of the chemo. Although the new one will require weekly treatments, it is a totally different medicine and it should have less severe side effects. The doctor is worried about neuropathy, a condition where your toes and fingers become numb. I plan to work the entire time, only taking time off on Friday afternoons for treatments.

During the cytoxan infusion yesterday, I got a massive sinus headache. I almost asked the nurse to stop the drip because I couldn't take it anymore. I decided to tell the nurse about the pain and she had the solution: Benadryl. She gave me a 25 mg pill and it went away almost immediately. What a miracle. I wonder if Benadryl would have helped me the other times my head hurt that badly. If only I had known earlier!

My wonderful friend, D, and I went to an Image Reborn class at Kaiser on Wednesday. It was such an informative session about reconstruction after a mastectomy. Basically, there are 3 options for reconstruction: tissue expanders with implants, TRAM flap (where they take your tummy tissue to make your new breasts), and Latissimus Muscle Reconstruction (they take your back tissue for the newbies). I'd love to get a TRAM flap, but I'm not sure I have enough of a pooch. Hey, it's a free tummy tuck too. At the end of the session, several brave women who have undergone the various surgeries took their shirts off to show us the results. They all looked AMAZING! I am now confident that Kaiser plastic surgeons are just as skilled as others out there. You can barely see the scars on some of the women. They all had man made nipples as well. The nipples are tattooed on by the plastic surgeons. It's one of the last steps in the reconstruction process. One even had a beautiful man made belly button! I just cannot believe how far medical procedures have come. I've seen some pretty gruesome pictures on the Internet of women who have had mastectomies, but seeing these women in real life and up close gave me comfort in knowing that I might not look so grotesque after this is all over.

Decisions, decisions....before my mastectomy, I still have to decide between a hysterectomy or oophorectomy...

Treatment #4,
I was NOT happy here because I felt nauseous even before the infusion started.

Treatment #3

I was happy here because we brought Game of Thrones to watch!

It's Been Awhile

Yes, I know. I've been lacking on the blog front lately, but nothing new has happened. Since my last post, I've had my 3rd AC treatment. One more to go and I get a three week break. My weekly Taxol infusions will start the first week I return to work. Yippee.

My oncologist is even starting to joke around with us a bit. He called me "boring" because I am no longer a new patient and I'm in the middle of this regimen with no severe side effects. My body is tolerating the meds pretty well. My white blood cell count is always fairly high on the day of the infusions (thanks to the Neupogen).

However, I cannot wait to be done with the AC infusions. I hear that Taxol will be much more tolerable. I have not been feeling well at all. My head always hurts and I am always tired. I can't even explain the feeling. It's like the medicine went straight to my head and no where else. I get the same feeling towards the end of the actual infusion. I still can't drink plain water, something I used to guzzle down before chemo. I tried sipping some water with my Tylenol a few days ago and I spit it back up. Had to take it with Sprite instead. Just thinking about water makes me queasy.

Most days, I just lie on the couch and wait for the time to pass. I feel so bad for the kids because their summer has been uneventful. No big trips or vacations here. On the weekends that I do feel better, we try and take the kids out as much as we can. We watched Brave last Saturday and on Sunday, we took them to the Aquarium of the Pacific. We got in for the kids' price since it was after 6 pm. The place was nice and empty.

I hope that I will feel better by Wednesday, in time to enjoy the 4th. Happy 4th of July, everyone! Be safe.

P.S. Tony hasn't uploaded the new chemo picture yet, it's on the point and shoot instead of the Nikon. Here is a picture from Tony's niece's engagement party on Saturday.

Kimberly and Ha's Engagement Party-Congrats to the beautiful couple! The wig I'm wearing is made of synthetic hair, but it looks pretty real if I put a hat over it. I was even given trial shampoo and conditioner from Sephora while wearing that same wig! So I guess it can pass as real hair.

Also, is anyone else watching Game of Thrones? My brother got me and Tony into it and we just can't get enough! It's an AMAZING show. <3 Ned Stark.

Round 2

On the drive to my second infusion, I felt so sick, I thought I was going to throw up right there in the car. But when we parked, my nerves calmed a little and I was fine throughout the entire thing. Today is day 3 and I am not feeling well. Nausea, headaches, exhaustion. I pretty much hung out on the couch all day while Tony did the grocery shopping, cooking, and caring for the kids. What a Father's Day. Poor guy.

My hair is also another story. As you know, I buzzed it last Wednesday. There is about 1/4 inch of hair left on my head, but it is falling out everywhere. I almost broke down in the shower today because it was gross to look at. I just couldn't get it off my hands, face, and body, no matter how much water I used. I plan on having Tony shave it off tomorrow afternoon. Plus he says there are bald patches all over the back side. Attractive.

Oh, I just can't wait to be done with the chemo. Two more AC infusions to go and I get a three week break. Then it's back to work. Ugh.

My mom, me, brother, sister, and dad at CSUSB. My brother earned his Master's degree in Social work.

Two down.

Hope everyone had a wonderful Father's Day!

The Big Shave

Here I am. I decided not to shave it all the way to avoid ingrown hairs and possible nicks and cuts. So my sister in law buzzed it with the #1 guard. Wow, I feel liberated. No longer am I defined by my hair. When people look at me, it's just me now. Nothing to hide behind. Me and my semi round head.  Matthew was a little apprehensive at first, and Peyton said that I looked cute. She then said she wanted me to have long hair again. I just had to reassure them both that my hair will grow back.

When I took off my head covering at home, they both laughed and said, "My eyes! My eyes!" I was told that it came from a Spongebob episode when King Neptune removed his crown to reveal a shiny, bald head. These kids...I'm just glad that they are so resilient. Thank you to my wonderful sis in law for buzzing my hair and styling my human hair wig as well. When I wear Keira (the name my kids gave the wig), I will share pictures. 

Right before the Big Shave

That's not the lighting. It's all my gray hairs!

Faux Hawk

Matthew really wanted me to have a mohawk, but we went with a faux one instead. He was still so happy to see it!

Getting rid of the faux hawk

$5 if you want to rub my head for good luck

Ready?

If you read my last post, you know that I NEED to watch Thor . Ahem, more like watch Chris Hemsworth in Thor. This is Matthew sporting his new Thor mask. I swear I had nothing to do with him wanting to buy it.

I'm ready for the Big Shave today. We are seeing my sister in law this afternoon at 5:30, so she can buzz it as short as possible. I am so ready for it to happen. Initially, I scheduled for Friday. But this morning I woke up to hair all over my pillow. It was totally gross. I grabbed some hair to see how much would come loose and out came a whole handful. Not just a few strands anymore. I also asked the kids if they wanted to pull on my hair to see what would happen. Both of them tried it (Matthew did it 3 times). They were a little freaked out, but amused at the same time.

Some people think I should just let the hair fall out on its own until I'm completely bald. It sounds great in theory, but you have to imagine what I'm going through. I showered this morning and there was hair everywhere. It wouldn't stop shedding. I had it all over my face and it was stuck to my body. When I tried to wash off the hair, more would come out. It was horrible. I had to bend forward to wash everything off so the water wouldn't touch my hair, or else it would just keep coming. I gently combed my hair to get rid of the strands that were already loose. You can see in the picture how much came out after I combed it.

The kids and I did a little shopping today and I tried to keep my head as still as possible. I never once touched my hair after this morning. I didn't want to leave a trail on my clothes or on the ground behind me.

It's not coming out in clumps yet, but I need to take control. It will still continue to fall out after I buzz it. At that point, I will just use a lint roller to remove any remaining hair.

By the way, AC chemo #2 is scheduled for tomorrow at 1:40. I had my blood drawn today and everything looks good, so all will go as planned. I am so not looking forward to the Neupogen shots again. My next post will show off my newly buzzed head. Remember, we're hoping for a round one.

This is what came out from gently combing through my hair this morning.  

Shedding like a Dog

Days 6-12

This past week has been pretty uneventful, in terms of my health. I have been feeling very upbeat, but super lazy. The side effects that were present the first few days after chemo have all gone away.

I noticed some shedding last night and this morning. The only thing I can relate this phase of hair loss to is when your dog sheds all over the floor or furniture. Only a few strands fall out at a time. I anticipate the big shave to happen in the next few days. Hopefully, I 'll have a cute, round head to show for it!

So, my little sister did the genetic testing and her results came back positive. She also has a mutated BRCA1 gene. Knowledge is power, I tell ya. With this information, she can be proactive in the choices she makes regarding her health. It freakin' sucks, but I hope she is empowered by this information. I was really hoping that the mutated gene started with me, but now we know for a fact that one of my parents has the gene. I can't even explain my feelings about this whole thing. I hate everything about it. Cancer sucks just the way it is, but this stupid gene mutation is making things worse.

*Sigh* On to a brighter subject. I went to the Ontario Improv to watch a show called Vagina Dialogues with a few of my good friends last Thursday. We had an absolute blast. My vice principal is the producer and it is a show to raise money for cancer. Boy, some of the jokes were D-I-R-T-Y, but soooo funny. My cheeks were still sore the following morning.

On Saturday, Cam and I went to a BINGO fundraiser for breast cancer. It was held in honor of an amazing woman I met to celebrate the one year anniversary of her double mastectomy. Afterwards, we watched Snow White and the Huntsman. Let me tell you, I am dying to watch Thor now. All because of Chris Hemsworth. Can you say "eye freakin' candy?!" Another *sigh.* That was a good sigh though.

Overall, I had a great week. This Saturday, we will be celebrating my brother's graduation from CSUSB. He's getting his MBA! Woohoo. So proud of the man he's become!

Ontario Improv

BINGO fundraiser

Oh my...Let me go get my wig.

Hair Loss Woes

Days 2-5

The last few days, I've had some minor side effects from the chemo. Slight nausea, migraines, and metallic mouth. The metallic mouth bothers me the most because I can't control it. At least with the nausea and headaches, I can take medicine. With the funky taste in my mouth, I don't even want to drink water. Plain ol' water makes me queasy, so I've had to resort to other types of drinks...iced tea, ginger ale...even my oh so loved coffee has not tasted good at all. I could be getting headaches because I'm not drinking enough coffee! I can't tell which side effect is caused by chemo or which ones are caused by the Neupogen shots, which have been stinging me like crazy. My right shoulder is also very achy. I thought it was from the port surgery, but now that I think about it, it might be from the Neupogen.

I visited Dr. Morton for my post-op yesterday. It looks like I developed some sort of allergic reaction around my incision site. Other than that, it is healing just fine. I knew it looked weird and it shouldn't have itched so much.

I had a crazy, vivid dream last night. I don't remember the exact location, maybe a graduation somewhere. As I was standing there, my hair started falling out in huge clumps, roots and all. I remember seeing all the hair come out in what looked like clip-on hair pieces. The anticipation of my hair loss is causing me to lose sleep. I feel like I am so prepared for this, yet I am beyond scared for it to happen. I have read everything there is to read about hair loss during chemo. I find myself visiting the same websites over and over again. I've even contemplated buzzing it 10 days post chemo. I need a haircut right now anyways. It's actually getting a little long. According to the doc, I have roughly 9 days of hair left. Since we are expecting a heat wave, buzzing it might not be a bad idea. But I'd still have to cover up when going out in public. Ugh, I just don't know what to do to minimize the emotional effect this is going to have on me.

Ouch, NOT!

Day One Post Chemo:

Last night was not fun. I had such a hard time sleeping. I kept thinking, "When are the side effects going to hit me? Am I feeling nauseous right now? How many hours has it been since I last took the nausea pill? Am I going to wake up with hair?" It didn't help that I had to use the restroom numerous times, probably from the tons of water that I was practically inhaling. 

The great thing was that I woke up feeling absolutely normal. Tony stayed home today, so we went to the park and rode our bikes around. I felt like a kid again! It was so much fun to be at the park on a weekday morning, with the whole family. There were no other families out there; we had the whole place to ourselves. Usually, we have to fight the crowds on a weeknight or the weekend. 

This afternoon, we tried a recipe from my new cookbook, The Cancer-Fighting Kitchen. We made Middle Eastern Chick Pea Burgers. Not as tasty as I'd hoped, but a decent and healthy meal, nonetheless. 

Ok, so Tony had to give me my first Neupogen shot today. I was not looking forward to it. I wanted to take a picture of the action, but I freaked out too much. I couldn't look away AND snap the picture at the same time. Got yelled at because I screamed before the shot. So no action shot today. It really wasn't bad at all. I'm just not used to getting a shot by someone other than a medical professional. 

One down, four more to go

The setup

The Red Devil

The Red Devil is the name used on the streets for Adriamycin, one of the meds that I received today during my 1st chemo. The nurse even asked where I learned that name from since she doesn't like to use it. Adriamycin is straight up poison. Not only is it a scary red color, the nurse has to wear a full gown and gloves to give it to me. She has to do a manual push, which means she sits there and pushes the meds into my IV, as opposed to having a drip. It took about 15 minutes. I asked her what would happen if someone touched it. The answer, "It burns your skin off." And that s*** is going in my body? Are you *&%^ kidding me? Sorry, I don't normally curse, but seriously, you can't call that medicine. 

I'm sure you're wondering how my first chemo treatment went today. I made a long list of stuff to take in my chemo bag. I even brought along my work lunch bag for water and snacks in. I think people thought I was going to stay overnight. I had so much stuff! We checked in and I felt that the receptionist was extremely nice, knowing that I was having chemo today. Then I saw my clinical research nurse (I was randomized into the control group, by the way). She went over all the possible side effects of each medicine that I would be receiving. My oncologist, Dr. Chan, came in as well and checked my lungs and heart. We talked for a bit about how I felt being in the control group versus the one receiving Herceptin. To be honest, I was a little disappointed, but Tony is happy that I won't need an extra year of chemo. The bright side is I will receive very close monitoring and beyond excellent care. 

Before I was taken into the chemo suite, my nurse had to double check the dosages on all of the medications. About ten minutes later, I was taken into the suite. It reminded me of the holding area before I go into surgery. Lots of semi-private areas with recliner chairs. I saw a few patients using those chairs. She asked me if I wanted a private room, which I gladly accepted. The private room is small with its own bathroom. 

All of the procedures were explained to me once again. She poked the needle into my port and I didn't feel a thing, thanks to the numbing cream they gave me. Then she drew some blood to make sure that it worked properly. Sometimes, the port can rotate if it's been in for too long. I was given pre-meds, Zofran, Tylenol, and Decadron. It was now time for the Adriamycin. I tried not to freak out as the red liquid was going inside of my body. The next medicine, Cytoxan, was given on a drip and that took an hour. During that time, I bossed Tony around a bit. Can you take my shoes off? Get my blanket? Get my mentos? Get my Nook? Help me to the bathroom? Get my tissues and lunch bag? Recline my chair? He didn't like it very much. 

Once the Cytoxan was done, I was free to go home. Woohoo! We had dinner at my mom's and are now relaxing at home. I felt a little tiny bit nauseated, so I took a Compazine over an Ativan. Dr. Chan said NOT to be a hero and he wanted me to take the meds as soon as I felt the least bit nauseated. But doc, I have a gene mutation, remember? I am the almighty Phoenix! 

I was given 2 anti-nausea medicines and I threw away the instructions, so I had no idea which one caused less drowsiness. Thank goodness for Google. Ativan is used for depression and comes with a whole list of side effects. They both do, actually. Let's see how I feel tomorrow morning. Tony took tomorrow off, so he can "monitor" me. Tomorrow comes with a new set of challenges. Injecting myself with Neupogen to increase my white blood cells. $300 a pop, without insurance. Tune in.

Love, 

Chinh

This is my port, right after she stuck a needle in it. 

Manual push of the Adriamycin

Red Devil

1st AC treatment, relaxing in my recliner

Waiting to be called into the chemo suite and drinking LOTS of water. I really planned on wearing makeup today (since I knew I was going to be taking lots of pics, but ran out of time this morning.) Yes, I'm vain.

Tickle, Tickle

I was the second person checked into surgery today and the second to last person out. Time wise, that would be 8:15 a.m. to 6:30 p.m, for what was initially supposed to be a 30 minute procedure. I had a "feeling" about today, but didn't want to jinx myself, so I didn't say anything to Tony. First off, the nurse that checked me in was the same one that couldn't get my IV in the last time. Then, the two nurses that were assigned to me laughed as they tried to look for a vein. They said my veins were super tiny (no, duh...that's why I'm getting a port). They joked about how the needle was bigger than my vein. I couldn't believe they were actually finding humor in this whole painful ordeal.

I come to find out that my surgeon's first case was running late because there were "findings." They had to bring in a second surgeon for that person. I was afraid that my surgeon wouldn't be on his "A" game for my procedure as Tony put it, since he was probably a bit frazzled by his first surgery. He is human after all.

My anesthesiologist was this really nice, soft spoken man. He said that because I'm so small, the port needed to be inserted at a steeper angle. It was a good thing I was going to be asleep. When I woke up, I was told that my EKG readings were irregular and I might need to go in for another surgery. It turns out the catheter was tickling my left ventricle. My understanding was that the catheter was inserted too far into my heart. Basically, in between regular heart beats, I felt some serious fluttering and it showed on the heart monitor as a cluster of crazy spikes. The flutters were so strong that I could feel my body move. The anesthesiologist said they take something like this very seriously and it was up to my surgeon to make the next call. They brought in a mobile X-ray machine and did a chest X-ray, while I was still very groggy. I couldn't even sit up on my own.

Dr. Morton came in later to tell me that he was not sending me home like that and I needed to go back into surgery. I thought it was going to be a local anesthetic this time with sedation, but nope, I was fully asleep again. It must be the only way he was comfortable doing things. About an hour or so later, I woke up, did another chest X-ray, and was finally cleared to go home. He ended up cutting 4 cm off the original  length of the catheter. No pain, no gain, baby. Went back to my mom's for some good ole' pho. The best post-surgery food.

The simplest surgery so far ended up to be the longest and most stressful one. Go figure. At least I won't be laughed at about my veins anymore. This baby is hooked up straight to my heart one of my large veins for the infusions. The nurses better be able to find the port though. I met a lady whose nurse missed her port during an infusion and she said it felt like a knife went through her chest. Come on, people. Get your game on.

Have a safe Memorial Day weekend!
Chinh

Feeling the Love

Summer is here, baby! After work today, I met with two of my really good friends, D and P at a local Starbucks. M, we missed you! I actually had some self control and ordered iced green tea instead of my usual coffee. Yay, me!

D and P had a huge surprise for me. They put together a tote filled with goodies from my friends at my old school, WH. Man, do I miss that place. Nostalgia hit last week when I visited for the first time after I moved to middle school. Although I like my new school, it is nothing like WH, my second home and family.

I read in a book somewhere that when you are diagnosed with a life threatening disease such as cancer, it is overwhelming the amount of love and support that you receive from friends and family from all walks of life. Even more than when you get married or have a baby. I've been feeling a lot of that lately, but today, I was taken aback by the generous gift from my WH family. It is so cliche to say that I was at a loss for words. But really, how does one explain the feeling? I wanted to cry, I wanted to give it all back, I wanted no one to know...it's so hard to accept gifts and offers of help. But at the same time, I felt so grateful that I have these wonderful people to call my friends.

It's just that I usually never ask for help of any kind. I always just deal with things on my own. To know that I am loved and cared for so much and by so many people... I just never knew. Never.

Don't you ever wonder, sometimes, how many people would attend your funeral? What people would say? Yeah, I just went there.

Tomorrow, I have my pre-op and ultrasound. Then comes my port surgery on Friday. Good times.

I leave you with a picture of the super cute tote that D and P shopped for. They know my taste exactly. The lining was lime green, people! Inside, I found all sorts of things that are going to be useful during chemo (D did lots of research on this)...gum, mints, socks, jammies, lotions, and much more. You can suck it, cancer! You got nothing on me!

Got a Date?

Yes! Finally got a date. I'm scheduled to have my port surgery next Friday, right before Memorial Day weekend and my first chemo infusion will be on Thursday, May 31st. I am so anxious to get all this started. The sooner I start, the sooner it will be over!

Now, what to bring to my first chemo session...movies, snacks, blanket, socks, mints, iPad??? I also need a generous sized bag to carry all my stuff in. Must search Etsy! Great excuse to buy a new bag or tote. Don't ya think?

I'm excited for summer to start. Only 2 more days. Even Matthew is counting down. Two more days until we can sleep in...at least until 7:00 am. It would be nice if Tony was on the same schedule as us. Wouldn't that be awesome! Two month vacation for the whole family. If only....

Fairies Come in All Kinds

So, my oncologist and I have both been bugging my surgeon about the date for my port. It looks like I will be going under general anesthesia again! But I think it will be a much shorter surgery this time. From what I've read online, it should only be about 30 minutes.

My surgeon called yesterday and he has jury duty next week! He hopes to be released, and has tentatively scheduled me for Friday, 5/25. I told him to tell the judge that he has a very important patient to work on.

I hope everyone had a wonderful Mother's Day. Mine was quite relaxing. Tony and the kids brought me breakfast in bed...I actually didn't get out of bed until it was time for lunch!

This past Monday, I had several appointments. First, I went to Kaiser Ontario to get a heart scan. It was actually pretty cool. They withdrew some blood, mixed it with chemicals, then put the blood back into my body. At that point, I was radioactive!! Then they put me on this bed and a huge round thing scanned my heart for 6 minutes.

Next visit was in Fontana to get an EKG, some blood work, and meet with the gyno-oncologist. She said she has to monitor me every 6 months until I get my oopherectomy or hysterectomy. I have to get an ultrasound next Wednesday as part of the monitoring, right after I see the nurse for my pre-op.

In the meantime, I have done so much research on bilateral mastectomies and reconstructive surgeries. There are lots of options available and I will be attending a class in July that is run by a plastic surgeon. The plastic surgeon will discuss options and patients will be there to show you the results from their actual surgeries. Should be pretty interesting...

I told Matthew that maybe the hair fairy will come by when I lose my hair. He said, "To bring you a wig?" I said yes, and he got such a kick out of it! I might have to plan a visit for the hair fairy soon!