The Phoenix

The Phoenix is a beautiful, mythical bird. Not only is it Dumbledore's pet in the Harry Potter series, but it is also Jean Grey's name from X-Men. Perfect. However, I can't take credit for this one. After Tony read my last post, he immediately said that Phoenix should be my name. So there it is.

On Saturday night, I read the book Butterfly Kisses and Wishes on Wings to Matthew and Peyton. It is a children's book that explains cancer to young ones. The book is written from a little boy's point of view about his mom's cancer. As soon as I started it, Matthew asked, "Is this book about you, mom?" I only read about half the book before the tears started coming. Tony had to take over. I think Peyton might be too young to understand, but at six years old, Matthew understands more than we give him credit for. I couldn't read his expression last night. Was he worried? Scared? He hasn't talked about it, but Peyton asked me to read the book again to her this morning.

It was such a busy weekend. We celebrated our niece's 3rd birthday today, and we also visited my cousin, who just had her first baby. Baby Emi is absolutely beautiful!!! I already want to see her again!

Boy, am I exhausted. My left shoulder aches so bad, I feel like it's on fire. I haven't even had a chance to look over the information on the clinical trial that my oncologist suggested. I had to grade 60 projects, just so they are ready for Open House. Playing catch up from work is no fun.

Chinh

One Step Forward, One Step Back

For Harry Potter fans, remember when Snape shed a single tear right before he died and Harry Potter collected it so he can go back in time and live through all his memories? I had that moment. It's roughly 2 a.m. and I can't sleep. I shed a single tear, just one. I knew I had to sit down at the computer and journal.

As the previous post stated, I had a follow-up with my surgeon at 8:30 this morning. So I thought. We went to check in to find out that Dr. Morton was in the OR today, and my appointment isn't until tomorrow morning. No freakin' way! I was so excited to get the drain out and now you're telling me, I have to wait an extra day! I could've screamed.

It was early enough that Tony and I decided to have a quiet, almost romantic breakfast at Mimi's Cafe. I really had no appetite, so I kind of picked at my food. We then headed out to run some errands, and picked Matthew up from school so we can take him to my mom's.

The genetic counselor was next on the list. I was a nervous wreck. I hate that nervous feeling you get when you're so anxious about something. I know this is cliche, but there were butterflies in my stomach in the waiting area. Why would they make you wait past your appointment time unless they had bad news to share, and they needed time to figure out what to say to you? That's all I could think about. And of course, I was right. The genetic testing came back positive. I have a mutation in my BRCA1 gene. I am missing the letter "T" in one of the sequences. Tony says if I have a mutated gene, why couldn't it have been something cool, like the X-Men? I figured maybe I could fly now. I always dreamt of being able to fly since I was a kid.

We were shocked to hear the news, but had already prepared for the worst. I knew that if the results came back positive, there would be no doubt in my mind that I would get a bilateral mastectomy and remove my ovaries. I guess I'm not out of the woods when it comes to surgery. I was referred to speak with an oncologist-gynecologist to review my options. It was almost as bad as the day we first received the diagnosis. Cancer sucks.

Before we left, the genetic counselor asked if we had any questions. We had none at the moment, but after we processed the information, we had a ton. And no one to answer them. We knew what the results meant. My brother and sister should be tested to see if they have the mutated gene. Matthew and Peyton need to be tested when they become adults. There is a 50/50 chance that I may have passed the gene on to my children. Does the mutated gene skip generations, I wonder? There is no known history of breast cancer or ovarian cancer in my family. Also, which one of my parents carries this gene? And what does that mean for them?

Well, on to my last appointment with my oncologist, Dr. Chan. We spent the next hour and a half in his office reviewing my pathology report and talking about treatment options. He really wants me on a clinical trial, and we are leaning in that direction. I have the weekend to think about it. Chemotherapy is estimated to start in about 3 weeks. Just enough time for me to get used to my short hair, and then it's gone.

I need a cool X-Men name, like Storm or Wolverine. What would a flying woman be named?

Lovingly,
Chinh

Keep the Ball Rollin'

Here is tomorrow's agenda:

8:30 Follow up with my surgeon
2:00 Meeting with genetic counselor to go over results of genetic testing
3:00 Meeting with my oncologist for the 1st time to talk about treatment

I'm glad that things are moving along quickly. A little nervous about the results from the genetic testing. Who am I kidding? I'm a LOT nervous about it.

After tonight, I will be sporting a new hair-do. Bye-bye long hair!!

Brighter Days Ahead

The phone rings and my surgeon is on the line. He asks, "Are you ready for some good news!" "Heck, yeah!" He told me that the margins were clear on the new cancer that he found! This means no more surgery. Also, of the 15 lymph nodes that he removed on Friday, only one of them had cancer in it. He referred me to the oncologist, who I should be hearing from very soon. The oncologist will then determine my treatment.

So, to summarize, the surgeon removed the original tumor (1.4 cm), along with the additional non-invasive cancer that he found. Of the 17 total lymph nodes that were removed, two had cancer. He currently put me at a Stage 2. I am anxiously awaiting the results of the genetic testing. My follow up with the surgeon is on Friday to remove my bandages and drain. I can't wait to take a shower! I weaned myself off the narcotics, and now I'm taking plain 'ol Tylenol to control the pain. I was also able to drive Matthew to and from school today. We are making some progress, people!

Happy thoughts,
Chinh

Pain, Pain, Go Away

So, I really thought that I'd recover quickly from this surgery. I was actually going to cancel my sub for the rest of the week. My body responded with, "Not so fast!" Even as I sit here typing this post, I feel a little nauseated. I've been taking the pain meds prescribed by the doctor, but not consistently. I've definitely been paying the price for that.

I'm going to take a moment and put Tony on a pedestal. He has been so wonderful (not like he isn't always amazing) this past weekend. He's had to do all the household chores, on top of caring for the children and for me. He has to give me a sponge bath, wash my hair, help me dress, empty and record my drains...the list goes on and on. Oh, and tie my hair. Let's not forget about that. My close friends, D and M, came over to visit on Saturday and they saw how Tony put my hair up. Stylish, right ladies? I love him with all my heart and I am so thankful that he belongs to me. 

Ouch, my head is spinning at the moment. I will try to keep it short. Surgery went well. My follow up is scheduled for this Friday at 8:30. I hope to get the drain and my bandages removed. As for the results, I'm hoping to hear from Dr. Morton by Wednesday.

This last weekend was quite eventful. We had a quiet Saturday, but on Sunday, we celebrated Matthew's 6th birthday. He said the only difference he felt was that he was taller! Don't you love what kids say when you ask them adult questions, like "How does it feel to be 6 years old?" I'm glad the kids enjoyed themselves, because there were moments when I had to lie down and rest for a bit. Sending hugs to all our family and friends that helped to clean up after the party.

I can't finish this blog without showing you the bracelets that D and M got me. In one of my emails to them, I was wishing for brighter days ahead. They found a gorgeous little bracelet that had a ladybug on it, which perfectly symbolizes my wish. A ladybug is a sign that there will be brighter days ahead. The other bracelet is one of friendship and it says on the back "Share hopes fears." That sums up exactly what friends do with each other. Since D and M cannot always physically be by my side, I can wear the bracelets and know that they are there with me...whether it be at the hospital, at home, or even at work.

XOXO,
Chinh

To Google or Not to Google

This morning, we had our family photo shoot with a good friend of mine. It was loads of fun! Matthew needed some time warming up, but in the end he was all smiles. I did not know how difficult it was to coordinate outfits for photos. Last week, we went to Old Navy and bought something new for everyone to wear. We tried on the clothes last night and I just wasn't happy with it. At 10:30 pm, I came up with a new color scheme and started pulling clothes from every closet. Tony thought I was crazy to try on clothes so late in the night, but in the end, I was happier with the new choice. 

I took off my surgery tape, for lack of the right term. Incisions are healing nicely. Too bad they're going to be cut open again on Friday.

As Tony had blogged about earlier, we can't take Matthew to Legoland next week because I will still be recovering from my surgery. We're going to have a small celebration instead, with a few family, friends, and pizza delivery! 

Those of you that know me know that I google everything. I even read reviews on chapstick. Freaky, right? Since my diagnosis, I've been so scared to research anything about breast cancer. I was afraid I'd accidentally pull up sad and depressing stories. I mean, why do that to yourself, right? However, I have been slowly looking up medical terms that I don't understand in my pathology reports. 

Tonight, I googled "how to explain hair loss from chemotherapy to children." Bad idea. I read some really sad stories and got emotional.

Plan B: I went on Amazon to look up children friendly books about cancer. Another bad idea. Read great reviews, but again, I got emotional. Reality hit. I....have....cancer. Sooner or later, I have to tell my kids. Tony thinks they're not ready to know that their mom has cancer. He doesn't think they're old enough to understand. 

Here's my reasoning: I can't keep telling them that I have to visit the doctor, yet again, because I'm "sick." I can't keep telling them that I'm not feeling well, so grandma has to help watch them. I can't keep telling them that they can't be near my left side because they might hurt me. Not without an explanation, at least. So I ordered two books. They're called "Butterfly Kisses and Wishes on Wings" and "Nowhere hair." I know it sounds vain, but the thing that is bothering me so much is how to explain the hair loss to them. Any creative ideas?

What does a cancerous tumor look like? Tony thinks it's black.

Chinh

Something has changed

What has changed, I'm not so sure. Up to this point, I was okay with my husband updating our family blog about this new obstacle in our life. But I realize it's not the same as hearing from me, from the person who was given this life-changing diagnosis on March 31, 2012 at 11:00 a.m. I now have the desire to  journal all my thoughts for the world to read. Perhaps it's my way of healing from within. Or perhaps I just need to unload my mind to prepare for the new challenges that the future holds. Maybe it's just a practical way to keep all of my doctor's visits organized. I don't really know. I just know that I want to do this for myself and for everyone who is willing to listen.

I will not start from the beginning. I will start with today.

I met with Dr. Morton for my lumpectomy and sentinel lymph node removal follow up. A mouthful, I know. Results came back as follows: lymph nodes were not clear, margins were clear for the invasive tumor, but he found a non invasive ductal carcinoma in situ (DCIS) on the outer edge of the mass. He scheduled me for another surgery this upcoming Friday, 4/20. This next surgery is to remove some axillary lymph nodes and the contaminated breast tissue. More waiting will follow. As I wait for the results of this next surgery, I am also anticipating the results from the genetic testing. If that comes back positive, I have no option but to get a double mastectomy.

Every day is different. Some days, I am content and I know that this little detour is "temporary" as a friend has told me. Other days, I feel like I'm on the other end of the emotion continuum. These days are especially hard when I am at work. Can you imagine teaching about how the Persians fought with the ancient Greeks when all you can think about is how you are up against the biggest fight of your life? Or how you will look with no hair and eyebrows?

Tomorrow brings another promise of the future, with different emotions and feelings. Funny how we didn't update our blog for 3 years because life with two kids was moving too fast. Funny how for so many people, it takes something like this for your outlook on life to change. Life has slowed down quite a bit around here.

We are scheduled to take family pictures tomorrow with a wonderful friend of mine. I can't wait to show them to you.

Tony and I will both be using this blog as a platform for sharing this life detour with all of our family and friends. Thank you all for your kind words of encouragement and for keeping us close to your hearts as we find a way to keep everyone updated.

I don't know about all of you, but I like to look at pictures when I read blogs. Today's picture has nothing to do with the subject, but I wanted to show you a recent picture of Peyton. She is both sweet and sassy, as those of you who know her well will agree with me!

Back At It Again

I know I haven't posted in a few days.  What can I say, there wasn't anything new.  Last night the doctor called.  The margin and lymph node tests came back in.  Both came back positive.  Not the news we wanted to hear.  She's scheduled to go back into surgery on the 20th.  We were supposed to do something for Matthew's bday that weekend.  Looks like we may have to do something for him this Saturday after the our visit to the doctor's office.  On top of that, I'm now feeling horrible.  Hope I don't get the rest of the family sick.
I would be home resting, but have an all day meeting with one of our vendors.  And so the day begins.

Surgery Day

What a long day.  We got to the hospital around 10ish and checked in.  Shortly after check in we were taken into the "staging room 1".  This was where they hook up the IV and do most of the prep work.  When we first got there, a nurse greeted us with a "hey I know you".  Turns out it was one of Chinh's student's mom from three years ago.  Talk about small world.  I'm not sure what you would call it, but I'm going to call them parking spaces.  One of the things I noticed was that our "parking space" was the number 14.  In case you don't know, our wedding date was 8/14 and I thought it was a cool coincedence.  We spent most of the morning in this area.  We were tired and bored out of our minds.  At a certain point another nurse asked us if we wanted to watch TV.  Heck yes we do.  Turns out the audio wasn't working and we had to resort to close caption.  Well lets just say an Eastwood western sucks without sound.  "High Plains Drifter" if you were curious.  We were second in line for surgery.  Around 1:45 we were wheeled over to the OR staging area.  At 2:00 we said our goodbyes and she was wheeled into the OR.  I got out to the lobby and texted my BIL and asked him to bring me some food.  That Double Double combo hit the spot!  The two hours in the lobby went by pretty quick.  The doctor came out and told us everything went smoothly and that she did great. We were told to hang tight and somebody would take us to the recovery area.  When we got there she was still a little out of it.  She started coming around and we started to crack jokes.  Prior to the surgery, we were told that they were going to use a blue dye to locate the closest lymph nodes and that her face would look blue.  Well she may have looked blue if she wasn't asian.  Yellow and blue make GREEN.  We tried to take pics, but the color didn't show up with our camera phones.  We made it back to her parents house and she finally got to eat.  Her brother went to pick up some pho for her.  She really enjoyed it.  When we finally got home one of our friends dropped off some food for us and there was also a UPS package.  Some of the girls got together and got her a gift.  I can't really describe it, but I'll just attach the picture.  Thanks for the food and the gift! 

Surgery Tomorrow

So Chinh's going in to surgery tomorrow.  She's a bit nervous, but I know she'll do fine.  She's going in for a lumpectomy.  Basically they are going to remove the cancerous mass and the surrounding tissue and one or two lymph nodes (I think it was two).  Once they have those things removed they will have the lymph nodes and the surrounding tissue sent out for testing.  The result will tell them whether or not the cancer has spread to different areas.  We should get the results back in seven to ten days.  The surgery will be about one and a half hours and she should be able to go home the same day.

Another Step Forward

Today we had her pre-op appointment. We got there a little early and let me tell you, it’s so boring sitting in the waiting room with spotty cell service. We started out talking to a PA and she did a re-examination. Once we were done we were sent over to our coordinator. All I can say is wow. She was very thorough and broke things down so “normal” people could understand. Once we had a better understanding of the diagnosis we were a bit relieved. The diagnosis had a lot of other variables that they tested for and most were negative which was a good thing. We left there feeling really good and were on our way to get x-rays and have lab work done. Tomorrow she’s going in to get some genetic testing done. The rest of the day was spent hanging out at her parent’s house. I managed to get away to take a nap. Boy I really miss taking naps. J

The World Turned Upside Down

We haven't posted here in forever, but I guess now is a good time as any to document our emotional journey.

3/31 - Wow, where do I begin. Here we are at the Doctor's office to find out the results of Chinh's biopsy. As you can guess by the title, the Dr. didn't have good news for us. To say we were devastated would be an understatement. Everything after that was pretty much a blur. We had committed that afternoon to go to James' one month celebration, but we knew that we couldn't put on a smile and didn't want to take away from the celebration. We were an emotional wreck. Picking up the phone to call our parents was so difficult. As usual, parents will be parents and offered positive, supportive words. Like anything else, word travels fast and we had some visitors that evening and a few phone calls.

4/1 - We're really wishing that this was a joke, but no such luck. We had originally planned for the kids to have an Easter egg hunt on Easter, but Chinh has surgery that weekend so in order to try and keep things fairly normal we decided to do it on April 1st. Her brother's family came over and so did her sister. We carried on as usual and tried our best to keep things "normal", but there was some awkwardness. The kids had a great time and it was starting to get late. It was time to address the elephant in the room. We had our heart to heart that left everybody feeling closer than ever (we really needed that guys).

4/2 - Man this is rough. Chinh is slowly getting a great support network going, but I'm still struggling a bit. Got to work and informed my boss and a few others. Trying hard not to be an emotional mess every time I told somebody what's going on. I couldn't function at all at work. I finally had enough and left for the day. I really needed some time alone. Chinh had some new contact numbers and spent some time talking to some strong women that have gone through this already. By the evening, my support group had also grown exponentially. Outside family and friends, the mountain biking community has really shown us lots of love and support. I went to put Matthew to sleep and I was out cold at 8.

4/3 - Woke up refreshed today. Something about today felt different. My alone time helped, but just talking to people about it helps so much more. I was able to talk to people about it without feeling like I was going to ball. Heck I was able to tolerate working the whole day. When Chinh got home, she felt the same way. I guess we're starting to move forward. Chinh had a phone conversation with a woman that really gave her inspiration. Tomorrow is the pre-op and we were trying to come up with some questions for them. We really don't know what to ask. So what did we do? We contacted a certain Dr. in Georgia (thanks bro!). Who woulda thought he could be professional. Of course the last few minutes went downhill real fast.

I'll try to keep this updated so everybody is informed of what's going on. The other reason I'm blogging is I think it's going to help keep my sanity. My grammar sucks and I'm too lazy fix it. :)
I know all the teachers are pulling their hair out reading this.

Hey Cancer..... my wife is going to kick your f-ing ass!!!