It's About Time

The following post has been saved as a draft for over a year now, so I decided to publish it. 

Note that it's out of chronological order from my last two posts.

I fell far off the blogging train. Now it's time to climb back on. I finished my last radiation treatment almost an entire month ago. My check up with my radiation oncologist is on Monday. My skin looks so much better, but it is still healing. I had some horrible skin peeling and ended up with very raw skin. The doctor called in a prescription for silvadene cream, which treats second- and third-degree burns, and that helped tremendously. I've also gotten the last of my fills. My plastic surgeon saw me only twice after radiation, but he managed to give me five fills in those two office visits. My skin is too thin to be stretched any further. I want to do the exchange surgery for implants soon, but he says that it might be a few months. I have to wait until my skin completely heals from radiation.

Last week, I also saw my medical oncologist for my three month check up. I had a heart scan the week prior, and everything looked good. My heart is functioning properly! One of the side effects of chemo is heart failure, so my heart has to be checked quite often. Here is the convo I had with my doctor:

Me: So....would you consider me cancer-free now?

Doc: Well, I don't like using that term. There is always a chance of recurrence, so saying that one is cancer free means that it will never come back.

Me: Okay....how about remission? Am I in remission?

Doc: Well, remission is not a good term to describe breast cancer. It's better used for other types of cancer, like leukemia. The best cure for breast cancer is surgery, and you've done that.

Me: What am I then?

Doc: You can say this. "I have a very good prognosis, and I've done all of the preventative measures to live a long, healthy life."

So, there you have it. It's time for me to enjoy my summer that I lost last year. There are still upcoming surgeries to be concerned about, but I feel 90% myself. Let's get this party started.

A note to cancer: You sneakily came into my life and turned it upside down. I must admit, you scared the crap out of me. I lost the easy going, carefree me. I'm afraid of my future, my children's futures, my parents' futures, my siblings' futures...But in the process, I gained some knowledge of life. At 34 years old, wise I am not. However, when Death visits so early, you learn a thing or two. I learned the importance of friends and family. I learned how to cherish every single moment. I learned to laugh and love often. I learned to take things slow and be peaceful.

I learned to be strong when I felt weak. This one is a biggie. Lots of people tell me that I am so strong and brave, and how they wouldn't be able to hold up if given the same challenge. It's not that I am stronger or braver than any other woman out there. Trust me, if you had to fight for your life, your children, your family, every single woman I know would rise up to the challenge. And every single one would look great bald.

Most importantly, I learned that I cannot control every aspect of my life. Surprises happen, you deal with it the best you can, and you learn from it. You move on, you teach others, and you don't dwell. (Although I've been known to dwell in the why and how.)

So cancer, how does it feel to get your a*% kicked? -Chinh

Recap

So I revisited the blog today, only to realize that I haven't posted in way over a year. I skipped all of radiation and reconstruction. Today's post might be lengthy since it seems I'm only blogging about once a year. (I really need to change that.) To help keep all of the dates straight, I'm recapping milestone events on this timeline. 

3.31.12     Diagnosis-Stage 2A breast cancer (IDC)

4.7.12       Lumpectomy and Sentinel Lymph Node Dissection 

4.20.12     Lumpectomy (DCIS removal) and Axillary Lymph Node Dissection

4.26.12     BRCA-1 diagnosis

5.25.12     Port Surgery

5.31.12     Dose dense Adriamycin/Cytoxan Chemo x 4

8.3.12       Taxol Chemo x 10

1.18.13     Double mastectomy

3.7.13       Radiation x 28

7.19.13     Implant exchange surgery

9.9.13       Second implant exchange surgery due to capsular contracture

6.3.14       Hysterectomy

8.6.14       Infection-5 day hospital stay 

9.5.14       Implant removal

That about sums it up. Radiation was a boring, daily chore. The treatment itself wasn't painful. But in the end, my skin was extremely burned, irritated, and the cause of many future reconstructive problems. 

My first exchange surgery from expanders to implants was unsuccessful. The capsular contracture set in too quickly, so I had to exchange those implants for form stable (gummy bear) implants. 

All was good until I came down with flu like symptoms and had to be hospitalized for 5 long days back in August. The doctors couldn't figure out what was wrong with me. Thank goodness they ruled out necrotizing fasciitis. Not only did I have a consistently high fever, my blood pressure was low and my heart rate was high. My left breast was red and painful to the touch. I was on the strongest antibiotic, and my symptoms still did not improve. The antibiotic was switched due to an allergic reaction, and I was finally released with a PICC line to administer Daptomycin for 10 days. The decision to remove my implants was finally made when my plastic surgeon realized that I wasn't improving. The infectious disease doctor had been pushing for surgery all along. So you're telling me that we could have gotten this done and over with when I was in the hospital?!?! I had to suffer through pain and stress for a whole month? 

The implant removal surgery went well. I was stuck with those horrible drains again. Seriously? Like I hadn't already been through enough, one of the drains caused my skin to form huge, painful blisters. 

Almost 8 weeks out of surgery, and life has resumed itself. My new normal is trying to figure out how to look good in clothes, so it's not obviously clear that I am completely flat chested.

Even with all the surgeries and recoveries, our little family has been able to squeeze in some quality family time these past few months. We visited Seattle in May, stayed at a beautiful Park Hyatt for my birthday, went camping at Barton Flats, traveled to Mammoth, and played at Legoland! 

Now that my list of cancer related events is getting shorter, I can get this blog back to it's original roots- documenting and preserving memorable moments with my two little rugrats. 

First day of school, August 2014

Matthew, 8 years and Peyton, 5 years

Mammoth, Labor Day Weekend, 2014

Park Hyatt Carlsbad, Fourth of July, 2014

The Lotus Flower

Out of the darkness

The struggles I have endured

My life, I take back

-C. Nguyen

Mirroring my life this past year is the lotus flower. The lotus flower starts out growing in muddy pond water, far away from the sun. Once it comes to the surface of the water, it blooms into a flawless and delicate flower. What perfect symbolism, agreed? In different cultures and religions, the lotus flower represents many ideals. Rebirth, life, purity…For me, this timeless flower is a daily reminder of the beautiful life I have after my battle with cancer. 

It has been a relaxing summer. We didn’t take any trips anywhere, but I still enjoyed every minute of it. Sleeping in and being lazy rocked. Now it’s back to the busy-ness of work and school. I am still recovering from reconstructive surgery that I had last week, where my plastic surgeon exchanged tissue expanders for implants. 

Tony and I started this blog soon after Peyton was born. She is starting Kindergarten this year (insert tears), and Matthew will be in second grade. So much has happened between then and now. Watching baby videos of both kids brought back so many happy memories. Memories of days when cancer was just a word. A word that had no connection to me, and BRCA-1 was just a mouthful of random letters. Today, that word and those letters will always be a huge part of my family history.

BRCA-1

The unwanted connection

Break the bond that is

-C. Nguyen

Cancer-versary

March 31st...the day came and went without a thought that exactly a year ago, I was diagnosed with breast cancer. Of course, I couldn't get my mind off of it the days prior to March 31. How do I feel a year later, after having gone through some life changing moments? Where am I now in this whirlwind of events? Where is my life headed after this? I don't have any answers. I'm still confused and angry as to how this all happened to ME, cancer, of all things!

I vividly remember celebrating Easter with my brother and sister last year. We did it a week early because I had surgery the following week. We spent quality time with each other and really enjoyed ourselves. But it was awkward because everyone was scared about the future, yet no one wanted to talk about it. It was a very somber mood. Here we are, a year later. We thoroughly enjoyed Easter this year as well, but the mood was much lighter. I've successfully sailed through several major surgeries and six months of chemo. We are traveling downhill from here, friends. Several more radiation treatments, reconstruction, and a full hysterectomy is still in the near future, but the toughest parts are behind me.

My body has gone through a million and one things. Every time I look at a picture now, I relate it to either pre or post-cancer. Pre-cancer photos depict happier, simpler, worry-free times. Post-cancer photos seem pretentious, like there is some sort of a film covering it. Smiling as if everything is normal and okay again, when it truly isn't. Life will never be the same for me and I kind of hate that. I don't want to worry about this beast ever returning, but it's part of what I do now. Worry, stress, panic, freak out. The list is endless. My doctors and I are taking every extreme approach possible to prevent recurrence. But I still need a guarantee, which no one can give me.

By the way, radiation is going pretty well. Twelve down, thirteen more to go. My skin is starting to darken a little from the treatment. I'm crossing my fingers that the burn will be mild.

So, does one celebrate a cancer-versary? And if so, how? Perhaps not celebrate, but give notice to. Should I have a nice dinner? Watch a movie (does Game of Thrones count)? Reflect? Mope around and feel sorry for myself? Be happy that it's been a year and I'm still alive? Be upset that I even have a cancer-versary? Maybe get a tattoo to commemorate. I'm not too sure about what one does in such a situation.

But I do know that March 31 will never be forgotten. It will always be remembered as a Life Altering Day. Just like the birth days of my children and my wedding anniversary. It's a Life Altering Day. But of course not in a celebratory kind of way. Momentous, yes. Celebratory, no. It will be remembered as the stupid day that cancer entered my life. The day that Death briefly visited, but left because he knew it wasn't time.

Thank you all for following my journey with cancer through this blog and supporting me this past year. I am one lucky gal to have so many friends and family that not only celebrated the milestones with me, but also helped me power through the tough times. Lift off the film and smile like you mean it.

Deflated, Lopsided, and Flat

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

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

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

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

Nipple-Less

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

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

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

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

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

Bye-Bye, Bon Bons

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

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

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

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

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

 Enough hair to go hat-less in public?