Happy Anniversary?

One year ago today this was my view:

It was the first day of chemo and radiation treatments. Now it amazes me how little I understood about what my life was about to turn into. I was planning on working through the majority of my treatment, assuming that near the end I might have to take a little extra time off. My parents were with me to help take care of Baby Chang but I thought it was a little unnecessary. HA! I couldn't have been more wrong.

The thing I held onto the most was that NPC was curable and the doctors I was working with had a high success rate with the treatments I was about to endure. Now with the physical and emotional scars I think only a survivor can understand I know I would follow these men and their advice again in a heartbeat (feeding tube scars and all).

Recovery has been almost as hard as the treatment itself, which I was told over and over would be the case. It seems monthly something new comes up that a year ago I would have been strong enough to fight off. There are physical side effects that should go away but they should have gone away sooner. Every three months I have a round of doctor appointments that makes me want to weep even when the news is good.

It has been a hell of a year and looking back it's hard to believe it really happened (not so unlike childbirth). I'm looking forward to a new year with new healthy experiences. Perhaps someday this will be an anniversary I will forget, or maybe I will always spend a little time on December 28th reflecting on how far I've come since 2009.

It's the most wonderful time of the year

A year ago, oh hell a couple of weeks ago this was not a Christmas Carol I was singing. In fact I wanted to ban all Carols, all joy and all thanks.

Well, as of today that has all changed. Tuesday morning I went in for a CT Scan to see how things were going with the cancer. Yesterday I saw my ENT and he said everything was looking great. Today I saw my Oncologist and he confirmed it! Forgive me if I need more than one opinion to celebrate.

As of now everything looks normal and healthy. I'm still in full remission.

It's amazing to think that almost exactly a year ago I was sitting in doctor's offices getting the news that I had cancer. As they spouted facts, figures and treatment plans I sat in disbelief. Adamant that I wouldn't start my treatments before Christmas because I didn't want to be sick on Baby Chang's first Christmas.

Fast forward a year. Mom and Dad Chang are here in Texas again this time because of pneumonia. Dad Chang has accompanied me to each appointment to hear the good news just as he was with me last year to hear the bad.

So, in some crazy way I can be thankful for the pneumonia and that the people who sat by me through the bad a year ago get to be by me to hear the good today.

It really is the most wonderful time of the year.

Playing Catch Up

I seem to have started dozens of blogs since the last time I wrote and for some reason haven't finished any of them. Perhaps it was because I had gotten to the point that I wasn't writing about my health or I just couldn't finish them because I'd been interrupted by work or Baby Chang. Who knows...

So I'll start by catching you up on life in the Chang household. We have been blessed to have Prairie Dad home most of the last four months. Unfortunately (and fortunately because it means employment) that streak may be coming to an end soon. Once the ink is dry I'll let you know what projects are in the works.

Baby Chang just went in for her 18 month check-up and couldn't be healthier. She is tipping the scales at 27 lbs 4 oz and she is a towering 35 inches tall. Yes, she is almost three feet tall, her arms however stretch to infinity and beyond, nothing is out of reach these days.

All of us took a trip a couple weeks ago to surprise Grandma and Grandpa Chang. Sadly it was because Grandpa was having surgery but that has all worked out in the best of all possible ways. Nothing could quite describe the look on Grandma Chang's face when we showed up on her doorstep. The fact that my sister kept it a secret may have been the biggest surprise of all.

As for me I got to spend another holiday in the hospital. I spent the week of Thanksgiving being poked and prodded. About five weeks ago I was diagnosed with pneumonia. After two courses of oral antibiotics I still wasn't getting better. My general doctor sent me to see a Pulmonary Disease specialist who ordered a CT scan. Before the results were in I was in so much pain they sent me to the ER. After a biopsy of the unidentified mass in my lung and draining the fluid outside my lung I was making a turn for the better. It turns out it is a strain of strep that has built a home in my right lung. On Monday I was able to go home but I have a PICC line in my left arm and give myself daily IV antibiotics. I'm happy to report I'm feeling much better. I have about a week left before the next x-ray and hopefully the removal of the PICC.

I'll admit laying in a hospital bed over Thanksgiving was emotionally one of the hardest moments of the last year. Finding things to be thankful for was virtually impossible. Today that is a little easier but I think I'll save that for a later post.

Back to Work

My silence over the past few weeks is solely due to going back to work. I'm enjoying my job tremendously. Not only is it great to feel normal again but I'm working on one of my favorite shows Madame Butterfly. Nearly everyday I get chills as our amazing soprano opens her mouth. I also revel in the genius that is our director. It is going to be a beautiful production and it's selling out quickly.

The downside is I have very limited time with Baby Chang. I usually get a couple of hours in the morning and on good days I'm home in time to read stories and put her to bed. It's not enough! She is enjoying her days with Prairie Dad which makes being away easier but walking out the door each morning is often more difficult than it should be. We are figuring it out though. It makes my days off even more precious and sacred.

The other thing that has been difficult is that by the end of the week I'm exhausted. There is always a very long nap on that precious day off. We always start the day with grand plans that often get waylaid in favor of the nap. Also by the end of each day I'm tired. I usually have enough energy to put Baby Chang to bed, make dinner and fall into bed.

So forgive me for the silence but I'm off to bed.

More excitement than should be legal

So tonight Baby Chang and I had a bit of excitement while Prairie Dad ran to get a few necessities from the grocery store (mainly a Diet Pepsi for Mr. Chang). I was trying to get dinner ready and poof KITCHEN FIRE! Yep my first kitchen fire. Baby Chang and I were having a good time when the fire alarm went off. The fire alarm going off is not a new experience in the Prairie/Chang household -- just ask our neighbors. So I grab a towel and fan the fire alarm into silence. I turn to look at the oven and it seems a little bright.

I look closer and yep flames, the chicken being broiled is on fire. One of the best things we have done with Baby Chang is give her a healthy fear of the oven and hot things in general. So luckily she cowered in the hallway while I threw half a bag of flour on the flames. So picture the chaos fire alarm wailing, flour and flames flying, baby screaming in the corner...

Amazingly when Prairie Dad returned he said "mmm it smells like chicken" rather than "I could smell the smoke down the hall". Then he walked into the kitchen. My explanation "we had a bit of excitement while you were gone". Tomorrow night we are going out for Chinese.

Well I've now survived cancer AND my first Kitchen Fire.

Using the Good Soap

Recently a number of people have asked me if I changed the way I lived my life as a result of having cancer. I think the question that was ultimately being asked was have I started to check things off on the bucket list and did I have the need to start living differently in case I died. A little crass but those are my words not theirs.

Strangely or optimistically the answer is no. In fact I have no bucket list. For the most part I have always lived my life exactly how I wanted. Proudly I have done a lot of things and continue to make my own choices. At this time I only have one regret and that was drinking too much the night before my college graduation ceremony. Instead of being able to enjoy the moment I was trying not to throw up on stage...

Perhaps more odd was that I never believed I was going to die from this diagnosis. Even when I was first diagnosed I believed I would beat it. I knew my life would change in ways I couldn't imaging but I was sure I would still be alive to figure out what those changes were, for many years to come. In fact, it was a little like the time I was on tour, we were flying into Dallas and as we were about to land the pilot told us that they weren't sure if the brakes were working (he followed that with "sit back and enjoy the rest of the flight"). As members of my cast started to panic I calmly looked at them and said everything is going to be okay. Astonished one of the performers cried "how can you be so sure?". Resolutely I replied "It is not my time to go and I'm definitely not going with all of you." A sentiment I thought many times over before the all clear was given.

I'm not trying to be glib just honest. The changes in my life over the last year have not been a result of having cancer. They have been the result of having a daughter. The choices I make now directly effect a person that I am completely responsible for. I'm responsible for her being on this earth and for the contributions she will make to it over her lifetime.

So, we eat more organic foods. We play outside or go swimming even when I'd rather sit on the couch and watch the View. Our lives revolve around meal times and bed times. We sing songs like "Nakey Girl" (composed by yours truly) before bath time. We live in Minneapolis and Houston. We buy diapers instead of high heels. The list goes on and on.

There is, I guess, one change I've made that has nothing to do with Baby Chang and the catalyst was cancer. I now use the good soap. You know the kind you are given as a gift. Often it is handmade and has luscious ingredients like rose, lavender or oatmeal. You get taken away by the scent and your skin feels incredible after you've used it.

So there it is. Forget your bucket list and start using the good soap.

Bye, Bye

Today was a milestone for Baby Chang and Prairie Dad. As I walked out the door (twice) to leave them to their own devices Baby Chang smiled, waved and said "Bye, Bye". Closing the door I listened for the inevitable drama queen tantrum and there was nothing. No screaming, no knocks from the other side of the door, nothing.

For me this was epic. Not in the "oh she isn't crying for me, isn't she sad I'm gone" sort of way but in the "yeah, she and Prairie Dad are getting the hang of it!" I knew they would get there I was just praying it would be before I started work in the fall. Unfortunately though Prairie Dad heads back to our home up north on Friday for three weeks. Hopefully, it won't undo the flow they have going.

I'm working on another Bye, Bye of sorts this week as well. After four years, a new job, a terrible pregnancy, a beautiful baby and cancer I've moved out of the place I called home. I have lived in the garage apartment longer than I lived anywhere (and longer than I expected to be there) other than my parents home. I have definitely had more "life" experiences there than anywhere other than my childhood home. Though other than all the cleaning supplies my belongings are gone I've taken my time cleaning to slowly say goodbye. I don't think I'll be smiling and saying "Bye, Bye" as easily as Baby Chang.

Tonight was a step in the right direction as my favorite Brits and I started repainting the apartment. Now there is a blue accent wall in both rooms, which makes it feel a little less like home. Tomorrow night we'll finish repainting and Friday I'll do the final wipe down and clean the floors. When that is done I will return the keys and hope the next inhabitants get as much joy from the apartment as I have had.

I Must Be Crazy

I started jogging today. Yep with heat advisories and all, I decided it was a good day to go for a jog. So I strapped Baby Chang into the jogging stroller, walked to the gas station to pump up the flat tires and gave myself a goal. Ten minutes, that's it 10 minutes.

After four minutes I thought I would die.

I let myself walk through an intersection and off I went again. Then I gave myself a few distance goals. First two blocks. Then to the next stop sign. Then to Weslayan, the busy street ahead. Once I got to Weslayan I looked at the time and I had gone 12 minutes! THANK GOD I COULD STOP!

Why would I start such an endeavor today of all hot days? Well, there are a few reasons...

1. Baby Chang was up every two hours last night and Prairie Dad didn't get much sleep (neither did I but he's not as used to it). So I thought if we left he'd be able to sleep a bit longer. Very kind of me don't you think.

2. I've been itching to use the jogging stroller. I know that's crazy too but it's like a new toy that's been in the box for a year.

3. I'm hoping working out will give me back some energy and speed along some of my recovery. It's still a slow frustrating process so I'm starting to try new things.

4. Jogging is a workout I can do with Baby Chang.

5. The Future Tri-Athlete and I have talked about doing a triathalon in a year. It will take me at least that long to get into shape...

Okay men you may want to stop reading now. The most exciting thing about the jog, my thighs did not rub together! Which means my shorts didn't ride up and there was no fear of chafing. I didn't actually believe that people's thighs didn't rub together when they walked/jogged unless they were so skinny they would fall over when you blew on them. It's the little things that make a girl smile and do a happy dance.

Now back to unpacking boxes...

Moving Day

Today was our Houston moving day. I must say overall things went very well even though at 9:30 last night we didn't know if we would be moving at all. See nothing is easy in 2010. My motto for the year "It is what it is". Some days are easier to be zen about everything than others.

Anyway, on Saturday we came to the new place to do a walk through with our Realtor and the Landlord's Realtor. In the lease we had specified for the condo to be cleaned and some repainting/touch-up painting on one of the doors. Well, much to our chagrin none of it had happened. Well every door but the one that needed the paint had been painted, kind of. When our Realtor pointed it out to the LL's realtor things got out of control. There was an all out cat fight. While the LL's realtor was on the phone with the LL.

The LL's realtor threatened that we weren't starting out on the right foot and maybe we should just walk away and they would give us our money back. WHAT??? Walk away we have movers coming and a truck rented are you kidding! At this point I demanded a contact number for our landlord, which she reluctantly gave. We then gave her a list of things we would like looked at before we moved in, which she was going to give to her client.

After we left I called our Landlord who was very lovely. She wouldn't guarantee everything on our list would get completed but she would do the best she could. She promised she would call me on Sunday between 5:00 and 7:00 to let us know where things were at.

At 7:00 I called her.

At that time my one deal breaker is that there are no screens on the windows in the Master Bedroom. For the safety of Baby Chang, who is smart enough to open windows, I couldn't fathom moving into the place without screens. She had to talk to her fiance about whether or not they would replace them and she promised to call later that evening.

There was no phone call.

It was too late then to cancel the truck and the movers, so we moved. I spoke with her fiance and they are pricing the screens. Sadly it looks like we may be replacing at least some of them ourselves.

Anyway the movers arrived on time. They were amazing. It was over 100 degrees here today and they worked their tails off. The total move out of one apartment into the other took 4 and 1/2 hours. Three guys plus a little help from Prairie Dad and I. Not bad. The one negative, I broke Baby Chang's bed while taking it apart for the move.

Now if only the unpacking fairies would arrive to show us where to put everything.

Baby Chang spent the day with our favorite British family. She loves hanging out there especially with the Quiet Poet. It will be tough not having them a staircase away. However, we plan to have many pool dates both at the Y and our pool! Yep the new place has a pool and a fireplace and a jetted tub and two covered parking spots and two bathrooms and two bedrooms and a HUGE KITCHEN!

This move hasn't taken nearly the toll on me physically as the Minneapolis move did. The dizziness was kept at bay most of the day. I'm tired tonight but nothing that I wouldn't be feeling if I was 100% and did what we did today. Definitely a move in the right direction.

Ray of Hope

It was back to the doctor today. My Houston ear ENT to be specific. It was supposed to be a follow up for the ear tube and hopefully a resolution to my dizziness. Unfortunately, I walked out of the office completely defeated and almost in tears.

After almost six weeks I have at least 10 more days on ear drops as the infection is still there. I'm starting over on the exercises to "fix/cure" the dizziness. It was extremely disheartening because while in Minneapolis it felt like things were at least moving forward and today it felt like a huge step back.

Then I went to my radiation oncologists office. We are currently packing up the Houston apartment to move on Monday. I literally have a closet full of medication and equipment that I've been trying to find out how to dispose of or donate (which is much harder than you might imagine). Half of the boxes contain a solution that you swish to help with the lack of saliva while going through radiation. Well, they were able to take it at my oncologist's office. In fact they were grateful because it will go to patients whose insurance won't cover the solution or can't afford it even with insurance.

It seems so simple but it made me feel sooooo much better. Knowing what I went through and that something so easy could help someone definitely pulled me out of my funk. I was also thankful that I had come so far.

Broken Records

Friday and Saturday I worked the Redbull Flugtag event in St. Paul, MN. It was quite possibly the craziest event I have ever been to, let alone worked.

Redbull Flugtag is an event that started in 1991 in Austria (home of Redbull). At this event teams of crazies I mean athletes spend months building flying machines that will be sent off a 30' high flight deck into the water. The goal is to have your craft go as far as possible.

Until Saturday an Austrian team held the world record at 195'. Saturday a team from Minnesota broke the world record and "flew" 207'. You can see the video of that world record flight here.

I spent Friday and Saturday up on the flight deck with hosts Uncle E and Tina Dixon. Really I don't know how to describe this event. On Friday we did a dress rehearsal for our pre-flight show. On Saturday the gates opened at 11:00 with the first craft flying at 1:00. From 11 - 1:00 we did interviews with Red Bull athletes, the Mayor of Saint Paul and watched as two sky divers landed on the flight deck. Once we got to the competition part my main job was to communicate between Paul the head of competition and the TV truck. Paul would let me know when the water was clear for the next flight. It was an amazing/crazy day.

The really exciting thing about this weekend was that I almost didn't take the job out of fear. I have been really tired again and I'm still battling dizziness and an ear infection. Originally I was told that Friday could be a 12 hour day followed by a 10 hour day on Saturday. I knew I could make it through Friday (heck this was a Redbull event after all) but was concerned that I would be too worn out to make it through Saturday.

In May I had gone back to work for one week but the days were shorter so I had plenty of time to rest. I was also working with people who knew what I had been through and were watching out for me.

I'm happy to say I made it through the weekend. Last night by 8:30 I could barely move and this morning I took a nap but during the event itself I had little problems. I got a little tired around 2:00 but I think that was due to being in the sun, adrenaline waning, little to eat and not enough water.

The incredible thing about this weekend was to go to work where I didn't know anyone. Not one person there knew what I have gone through. No one knew that I had lost over 70 lbs. No one was checking in with me to see if I was okay. I FELT NORMAL! It was a very liberating weekend.

The other exciting thing was that Baby Chang and Prairie Dad survived two days without Mom. Purely out of circumstance the longest the two of them had been alone was 5 hours prior to this. Though I was home each night in time to put Baby Chang to bed, Prairie Dad did all the rest. I think the two not only survived but thrived on the time together.

Tomorrow we head back to Houston to pack up the apartment there and move into new digs. It will be nice to have that settled and stop packing and moving finally. Plus we can hit the Y pool daily!

So this weekend was a great weekend of new records:
1. Red Bull Flugtag World Record.
2. Feeling Normal (if only for a couple days)
3. Baby Chang and Prairie Dad alone for two days

A Few Photos from the Farmer's Market

I had an amazing morning at the Minneapolis Farmer's Market just snapping pictures. All I bought today was tomatoes but it was tough to walk away from everything else.
























Oh the recipes I could explore...








I also stopped by Loring Park to snap a few photos of this fountain. Houstonians may recognize it, as it's twin lives on Allen Parkway.

Farmer's Market Day

I must admit we haven't done as well eating through the farmer's bounty this week as we did last week. It may be because I over did it just a little but it couldn't be helped. Last week I bought corn, sugar snap peas, green beans, zucchini, lettuce, tomatoes, English cucumber, fingerling potatoes, cilantro, yellow carrots and kohlrabi. I also can't forget the flowers!

So far we have had:
Stuffed Zucchini (thanks Paula Deen)
Green Bean Salad with Tomatoes and Onion (courtesy of Rachel Ray)
Fingerling Potatoes with Dill (Ina Garten's recipe)

Unfortunately we haven't touched:
Corn
Cilantro
Snap Peas
Kohlrabi

Although today I was finally able to find ground fennel for the kohlrabi and I have a recipe for peas with bacon I can't wait to try. Unfortunately our kitchen has been infested with fruit flies so I'm not super excited to get cooking.

Tomorrow is my Farmer's Market Day and the last time I'll get to go here in Minneapolis (unless I load up the car with veggies for the ride back to Houston next week). Right now the only thing I'll be purchasing tomorrow is tomatoes. However, I'm planning to take my camera and spend some time behind the lens which has been neglected as of late. If I can ever figure it out I may even post a few pics...

July 15th Really?

How did it already get to be the 15th of July? It seems like it was just Memorial Day! I've always thought of July 15th as the middle of summer. As a kid it was half over and time to start prepping for school (which I couldn't wait for). As an adult I want time to slow down. I love summer and the hot weather. Since I am part mermaid I can't think of anything better than spending the day at the pool unless maybe it's spending the day at the beach!

This summer has brought about mixed emotions. On the one hand I love the lazy days spent playing with Baby Chang and have no desire to see the time speed by. On the other hand I want to feel "normal" again. The end of August will be six months since the end of treatment. I've been told by then my energy should be close to back to "normal", my taste buds should have returned to "normal", and the tingling in my legs should be gone. I realize that six months is the average, the should is a big one and that some of those things won't happen for possibly months longer. It's just I can't wait to get my school supplies and new school clothes.

On my wish list for the fall:

1. Chuy's Jalapeno Ranch Dip
2. Chips and Salsa/Guacamole
3. Blue Moon Ice Cream
4. Any other kind of Ice Cream
5. Fresh Chocolate Chip Cookies
6. Any food seasoned with Black Pepper
7. Red Wine
8. Dairy Queen Oreo Cookie Blizzard
9. Prairie Grandpa's BBQ Sausage
10. Thousand Island Salad Dressing
11. Pickled Beets
12. Dill Pickles
13. Ketchup
14. Pizza with Pepperoni and Sausage
15. Brownies

I'm sure there is lots more but that's what comes to mind first.

Mama's Kitchen is Open

Let me start by saying I hope you all had an amazing weekend full of friends, family, food and fireworks!

Last summer we (Baby Chang, Prairie Dad and I) spent the month of August in New Jersey while Prairie Dad rehearsed in NYC. Since I only knew a few people in the area and going into the city was tricky with a two month old I spent a lot of time in our apartment playing housewife. I was cooking and baking almost daily. Dinner was usually on the table when Prairie Dad got home from rehearsal and on weekends a big breakfast was the order of the day.

Today I remembered just how much I enjoyed that. Saturday I hit the Minneapolis Farmer's Market one of my all time favorite places. I picked up zucchini, rhubarb, raspberries, tomatoes, lettuce, onions, beets, new potatoes, corn and peppers all for a fraction of what it would have cost us at the grocery store. Yesterday I made my first pie, strawberry rhubarb with a streusel top (here's the recipe) to take with us for a 4th of July BBQ. I'm happy to report that it was a hit AND that I can eat it and it tastes good! I'm still having problems with sweets tasting terrible but I digress. After the pie was in the oven I made breakfast -- scrambled eggs with oregano, topped with Avocado, Tomato and Red Onion served with whole wheat toast. Since I had already heated up the apartment I decided to make zucchini muffins. I will admit these weren't as good as I wanted them to be but they aren't bad.

Tonight for dinner we had roasted corn on the cob, Turkey thighs, and Panzanella Salad . I could not stop eating this salad! I recommend spending the exorbitant amount of money for the champagne vinegar. We will be making this salad A LOT this summer it is perfect!.

Believe it or not the cooking frenzy actually started Saturday night with dinner. After having to de-bone salmon with my tweezers. Bobby Flay says use pliers but tweezers was all I had and it worked quite well. On the menu was Salmon with a dill & Dijon sauce, roasted asparagus and rice. Prairie Dad claimed it was the best dinner he's had in months.

Tomorrow night's menu will include a Top Loin Beef Roast with a Mustard Paste, Dill Potato Salad and something with broccoli. We are doing an amazing job of eating through our Farmer's Market Bounty.

Since the first we've been moving into our Minneapolis apartment. It has been a tough move as it is a third floor walk-up and I don't have the strength to do as much as I would usually. In August we will be moving into a larger apartment in Houston and right now I'm contemplating hiring movers. I've never hired movers so if you have any tips I'd be happy to take them! I never thought I'd have homes in multiple places it seems more than a little crazy.

I suppose it's time for a health update as well. It seems I'm still battling an ear infection (I think it's time to see the Minneapolis ENT). I've also developed Positional Vertigo. If you think the room spins when you've drunk too much you should feel what happens when Vertigo sets in! The move is really taking it out on me. Today I haven't left the house and until a couple hours ago wanted nothing more than to be in bed all day. I'm heading to bed soon but feeling much better. Grandpa Chang recommended Dramamine for the spins (he's been here) and it seems to be helping. All that can really be said is "it is what it is", that is my motto for 2010.

I am happy to report that yesterday I hit one of my milestones! I drank a watermelon margarita well half of one. After half I wasn't sure if I was dizzy from the vertigo or the booze...

Not a post I wanted to write

Well, I had been working on a great post about Fort Worth, TX. Baby Chang and I got to spend a week with Prairie Dad in this jewel of a town. It even had photos!

Alas on Monday after arriving home I got hit with the sick stick, seriously hit. Monday night after putting Baby Chang to bed I sat down on the couch to relax and began to shiver and shiver and shiver. The fever started shortly after that and it wasn't long before the vomiting began. Prairie Grandpa came and "slept" on the couch until 5:00 a.m. just in case I had to make a trip to the ER.

Luckily this was a week of Doctor appointments. Prairie Grandpa was back Tuesday morning to take me to the Neurologist and hang with Baby Chang. After going through a nerve test (which I don't recommend unless necessary) and a viewing of my MRI he determined there was no swelling in my spinal cord. He diagnosed me with Lhermitte's Phenomenon (the Radiation Oncologist confirmed this on Wednesday) usually associated by MS but I DON'T have MS. So I still have tingling in my legs for the time being perhaps another 6 months to a year.

Later on Tuesday I saw my Cancer ENT (not to be confused with the other three ENT's I have). He said everything looks great and I have a reprieve from him for two months.

On Wednesday I was feeling a little more like myself starting to eat more than crackers. I went to see my Radiologist. He too confirmed that I was recovering nicely and quickly. He confirmed the Lhermitte's diagnosis and told me that genetic testing was not good for NPC so we shouldn't do anything yet. In a few years however we'll probably want to get Baby Chang tested.

Then Thursday at midnight I woke up with excruciating pain in my right ear. No fear however I have an appointment with the Ear Guy of Friday, a little Tylenol and I'll be fine. Thursday morning Baby Chang and I walked to the grocery store a rather normal thing. By the time we got home you'd have thought I ran a marathon I was EXHAUSTED so I called in reinforcements. The neighbors (more about them later) came and relieved me of Baby duty for a few hours.

Friday night was rough to say the least I spent the night dry heaving/vomiting every 30 - 40 minutes and the Tylenol was giving no pain relief. Finally I switched to Advil (4 at a time) and was able to get a little relief. I sent a text to the Future Triathlete who was coming to babysit later in the day and begged her to come early. My knight in shining armor showed up about 9:30. I made my way to the Ear Doc where he promptly made the decision to put in an ear tube. There hadn't been much change in the last three weeks and now there was an infection. Once again I'll be out of the pool this time for a year...

Monday I see the Oncologist who will hopefully also give me two thumbs up. Although I forsee a lecture about my weight as I've lost 5lbs this week from the illness and I wasn't up any from when I last saw him. I will hopefully get a reprieve from him for a few months as well.

Well, it's been a tough week but I've learned a lot about the Village I've surrounded myself with. Baby Chang and I have the most amazing support network and this week the troops rallied. Even Grandma and Grandpa Chang all the way from Alaska where they are taking a cruise for their anniversary.

Just a funny side note the word I most often spell wrong vomiting, you'd think when you are a pro at something you would know how it's spelled.

Cantonese Cancer

For some reason tonight I found it necessary to look for blogs that talked about Nasopharyngeal Carcinoma. What I found is a number of articles (you can read a couple here and here) talking about a new study that has identified a genetic risk to NPC . I also learned that my cancer is also called the Cantonese Cancer. Once again reinforcing the fact that I may be an Asian Man in disguise...

Actually, what these articles really mean to me is the serious consideration of genetic testing. The Tri-Athlete Goddess who works down the hall from me has been going through the testing. I couldn't begin to describe what she has gone through in the past year that lead her to the testing. However, her experience made me consider my options. Until today I didn't feel the need, now I'm wondering if I need to reconsider for Baby Chang's health.

In addition to the articles about the recent genetic links I read about a Tenor living in NYC and a 17 year old girl living in the UK who were also diagnosed with NPC. I feel a weird connection to both the Tenor and the young girl (neither appear to be Asian Men living in China either). I find it odd that someone in the same business I'm in has been diagnosed with this obscure cancer and then my heart breaks for this young girl. At 35 I struggled to understand what was going on and had a few breakdowns when I couldn't take the treatment anymore. I know at 17 I would have been overwhelmed to put it mildly.

When I finished treatment my radiologist had two of his patients call me, both welcomed me to a club that none of us ever wanted any part of. One had just hit his five years, cancer free anniversary. Now that is a club I can't wait to join!

After my post about the new side effects that I'm dealing with, a friend reminded me to look at the bright side and celebrate life. Though some days that is impossible most days I only have to see Baby Chang's smile to be able to see what is good in life.

Mermaids

I'm convinced I must have been a mermaid in a former life. Those genes have obviously passed onto Baby Chang.

All through my pregnancy I hit the pool to feel better. Just floating in the water made me feel better and lap swimming rejuvenated me in a way I can't describe. During treatments taking a long shower or bath was one of the few comforts and respites from the vomiting.

For the past week Baby Chang and I have been enjoying the pool at the Y almost daily. Often we are joined by by our favorite British Clan. Today we had our first play date at the pool. The kids weren't really sure how to play with each other but the moms had a good time. It was very nice to talk to someone with a baby about the same age as Baby Chang. We were able to compare notes and offer reassurance to one another. Hopefully there will be many Mommy play dates in the future.

It still amazes me how refreshed I feel after a little time in the pool. I'm sure the Mommy time didn't hurt either.

The Hits just Keep on Coming

It has been another week of doctor appointments. Except for Baby Chang's pediatrician it was all new doctors.

Let's start with Baby Chang... It was her one year check-up and she is doing great. She is 31 inches tall which is in the 95th percentile (basically that means out of 100 girls her age 95 would be shorter) and she weighs 22 lbs, 11 oz which is in the 75th percentile. I've always known she is above average. I'm also pretty sure a few of those inches happened in the last few days. She can now turn the lights off but can't quite get high enough to turn the switch back on.

I went to yet another ENT this week, yep that makes four in less than a year. This appointment was because my right ear was congested and I couldn't get anything to pop. I had to see a new Doc because I couldn't get into see either of my other ENT's and plus I was told "they don't do ears anyway". WHAT? You are an Ear, Nose and Throat doctor how is it possible? Just one more way the medical community baffles me. Anyway, the New Doc broke the good news that this could now be a chronic problem as a result of the Radiation. If I can't get the fluid to drain I may need tubes put in my ear. He popped my ear for me, which is a very strange sensation, but today it plugged back up. After a few hours of trying I finally got my ear to pop but I'm doubtful it will stay open and it doesn't feel like anything is draining.

The other new doctor I went to this week is an Internist. I have been having this amazing sensation for the last week and a half. It seems that every time I lower my head my there would be a tingling sensation running down my legs. From time to time if I'm in the right position it also makes my hands go numb. Well, she sent me for a Spine X-ray and an MRI (with and without contrast). Seems like radiation is to blame again. The first fear was that the cancer had returned in a new spot, thankfully this is NOT the case. What has happened is that it appears my spinal cord is ever so slightly swollen. The radiologist who read the MRI said she wouldn't even have noted it if it weren't for my history. So what's next? Yet another new doctor, a neurologist.

In case you were wondering I now have the following doctors (many of whom I see every two months):
1. ENT - Head and Neck Cancer Specialist
2. ENT - Did the surgery that found the cancer
3. Oncologist - Poisoned me with chemo
4. Radiation Oncologist - Totally screwed up my body with Radiation
5. ENT - Ear specialist because the first two don't do ears
6. Internist - The General Practice guru
7. OB/GYN - The woman who sees me - all of me - once a year
8. OB/GYN - Fertilization specialist just in case the chemo and radiation really screwed me up.
9. ENT - Based in Minneapolis just for good measure
10. Neurologist - The newest yet to be named.

SERIOUSLY who needs this many doctors!!!! This doesn't even count Baby Chang's two pediatricians!

If new side effects keep popping up who knows how big the list could be. I do need a good dermatologist if anyone can recommend one...

Baby Chang's big milestones

Friday was Baby Chang's first birthday. I KNOW! WHERE DID THE YEAR GO? It seems like just yesterday I was handing her back to my Mom so I could throw up one more time while they sewed my abdomen back together.

On Thursday Prairie Dad and I threw a little party for her in a hotel in Dallas. Many of the Little House cast came and sang happy birthday, ate cake with Prairie Dad's favorite ice cream and drank champagne. Now if you had asked before the party I would have been convinced Baby Chang would dive into the cake with both hands. Boy was I wrong, she didn't even touch the thing. I'm not sure she's actually related to me either because she had two bites of ice cream then nothing. Even when she saw Mommy and Daddy eating she wanted none of it, she could not be bothered.

Fast forward to Friday night and cake #2 again nothing. Well, today could have explained a lot. It was off to the ER for Baby Chang. Since Wednesday she had been running a fever off and on. Last night it seemed to come back with a vengeance and today she seemed a little sluggish. She did great while they checked her ears and throat and didn't even wince when they inserted the thermometer...rectally, and she only cried a little when they put in a catheter to check for an urinary tract infection. All was well, no infection just a little virus that we can't do anything about. Well a virus and teething (which I've been assured isn't causing the fever). Finally, today a tooth started to make an appearance. I couldn't be happier or more miserable watching her go through all of this when nothing seems to make her feel better. Luckily Mama Chang is here for lots of cuddling because did I mention I'm back at work this week.

Every spring the Opera spends a week at the Miller Outdoor Theater (yes outside in Houston it's only supposed to be 90 degrees everyday this week). This year I'll be joining the staff as the Assistant Director. Though I've been surrounded by amazing AD's for years now, who make my job easier as a stage manager, I have no idea what I'm doing. Now in my defense it might be because the last time I saw this show I was in the midst of undergoing cancer treatment so it's a little foggy. Really though I think it's because AD's like Little Ms. Bossy, Airstream Diva and the Hot Cyclist just do it so well you don't know how difficult it is. So while Baby Chang and Mama Chang are hanging out, I'll be pretending I know what to do and trying to make it look easy.

Don't Cry for Me...

In the past year I have had an extreme change in my weight. A year ago I was at my heaviest awaiting the birth of Baby Chang. Within two weeks after she was born I was down 29 lbs (she weighed in at 8lb 10 oz). Both my OB and I were shocked. I mush admit I was ecstatic I had already taken off all the pregnancy weight I had gained and then some.

Over the next few months I lost more weight thanks to breastfeeding. I couldn't have been happier. Without trying I had gone from a pre-pregnancy size 16 to a size 10. It helped that I was working full time and trying to be a single parent since Prairie Dad was on the road. I often ended up eating a sandwich or something that could be made with little to no noise in an effort to not wake up a sleeping baby, which is a little limiting I must admit.

Then came the cancer diagnosis. Doctors encouraged me to gain as much weight as possible from December 3 through the beginning of my treatments. This was more difficult than one would think. After years of teaching myself portion and calorie control it was hard to just let loose and eat whatever I wanted. Had I known then what I know now I would have eaten very differently. I would have had meals that consisted of nothing but cookies and ice cream or Tex Mex meals drowning in queso, guacamole and salsa. These are the foods I miss the most right now...

By the end of my cancer treatment I was down another 30 pounds. I lost another five after I stopped using my feeding tube and started eating solid food again. Again I am under doctor's orders to gain weight or at the very least not to lose anymore. Now I wear a size 2 or 4 comfortably. Trust me that is a sentence I never thought I would utter and I'm not sure how long it will be true.

For most of my life I have struggled with my weight. I remember being on Weight Watchers before points and long before I could drive. I was never able to share clothes with my sister or my friends. I'll never forget the day that I tried to convince myself that a size 14 at Lane Bryant was the way a 14 should fit and it didn't matter that I was shopping at a store I swore I would never have to shop in.

Until yesterday I didn't see the dramatic change that everyone else was seeing. When I looked in the mirror I saw the same body flaws I had always seen along with a few new ones. Yesterday the family and I drove to Dallas where Prairie Dad is performing for a couple weeks. When I changed for bed and looked in the hotel mirror I finally saw it. I now understand how shocking it must be especially for friends and family I haven't seen in awhile. Prairie Dad is still trying to figure out what happened to my boobs and butt.

I'm not sure I'll get used to being able to wear a dress and not have my thighs rub together. Or grabbing a small instead of an extra large when looking at clothes.

Right now I will admit I'm a little nervous about gaining too much weight back but wouldn't mind a few extra pounds. I am eating whatever I want in whatever quantities I can just in an attempt to get enough calories to fuel my recovery. Since I'm still limited in what I can eat (sweets still taste terrible, spicy food sets my mouth on fire and if something is too dry I can't swallow it) I'm eating food I haven't eaten in years. My counters are covered in processed foods which I try not to think about which goes against everything I believe or that I am reading about not having my cancer return.

Once I can truly eat whatever I want I will eat as much organic food as I can afford and focus on fresh foods again. For now it just is what it is and I have to be okay with that. In six months it will be interesting to update this post and see where the scale and I have landed.

Happy Mother's Day

Happy Mother's Day to all the mommies out there. This is my first Mother's Day as a mom. Last year at this time I was eagerly awaiting the arrival of Baby Chang. This year I was woken up at 7:00 a.m. by a very small foot in my face. It was quickly followed up by a very loud "HI" and the sharing of the sacred pacifier.

Though Prairie Dad had two shows today and I did laundry, dishes, swept the floors and packed for our trip to Dallas it has been a delightful day. We had lunch with Prairie Grandma and Grandpa followed by a nap on the couch with Baby Chang. While waiting for Prairie Dad between shows Baby Chang and I got to take a leisurely walk along the Bayou.

One of my favorite times of day is bath time. It is just me and Baby Chang, no tv, no phone just lots of splashing and smiles. There is no better way to wind down at the end of the day.

A Second Opinion

I went to the ENT this week and the PET Scan was confirmed. The second opinion was as good as the first I am in remission. Still a week later it means as much as it did when I got the call last week.

Unfortunately it doesn't mean I'm back to my old self. I still get exhausted pretty quickly and there is a lot of food I still can't eat. Not to mention that margarita that is calling my name is still a few months a way.

Prairie Dad has been here for almost two weeks and it has been crazy. We seem to have a hard time sticking to a schedule, or rather sticking to Baby Chang's schedule. This has made for some interesting nights. Someday I hope to give her some consistency. In a week she will be a year old (I KNOW I CAN'T BELIEVE IT EITHER) it has been an interesting year to say the least. As a result of our crazy year Baby Chang hasn't slept in the same place for two months in a row. Hopefully that will all change this summer.

We have started looking for a bigger place here in Houston but that has been slow going. Our search area is pretty limited since I want to stay within 10 minutes of Baby Chang's daycare. We aren't asking for much a rental house or townhouse with two or three bedrooms, covered attached parking, a larger kitchen, and a washer and dryer in the house. Oh and if it didn't smell that would be great. Really, is that too much to ask?

And the winner is...

ME! As of Tuesday, April 27, 2010 it is official I am cancer free. I am diagnosed as being in remission.

It was an amazing phone call to receive and an even more amazing phone call to make. Immediately I called Mom and Dad Chang (although Dad Chang was on the golf course and didn't hear for another few hours). Mom Chang was with Sister and Nephew Chang so the good news spread quickly.

Through most of my treatment I chose not to talk about my cancer on Facebook but the announcement of being cancer free couldn't be helped. The outpouring of congratulations was as amazing as the support I received through all of this.

My first question to the Doc after getting the good news was to ask what the next step was. As of right now I return to the ENT next week and the Radiation Oncologist in July. I will see Doctors every 2-3 months for a couple of years with CT and PET Scans being scheduled every 6 months. If the results stay the same the scans will become an annual affair until I reach the five year mark. At that time they will declare me cured. The appointments won't stop though they will just be fewer and farther in between.

For now I'm going to focus on getting rid of the pharmacy that has taken over my bathroom and closet, as well as continue to get much needed rest. I'm looking forward to that celebratory margarita but that is still a little way off (alcohol burns my throat)!

Oops

Well the feeding tube is out! Instead of having a doctor take it out I accidentally pulled it out myself. After panicking I called the doctor's office who was very non-chalant about the whole thing. In fact, I was told to just cover the hole and it would close on it's own. WHAAAAAT???? DO YOU NOT UNDERSTAND THERE IS A HOLE FROM MY INSIDES TO MY OUTSIDE????

Well, they were right. The hole has closed and all I did was cover it for about 36 hours. Now it looks like I have a second belly button. I now have an outie and an innie.

I also saw the Radiation Oncologist this week. He also said everything looks good. However, he scheduled the PET Scan for next week. Actually I go in on Monday and should get the results in a couple days. The PET Scan will show if there are any cancer cells growing but everyone is just expecting it to show scar tissue. IF there is anything untoward the continuation of treatment will be much easier. In fact, all they will do is put radiation capsules up my nose for 24 hours and that would be it. Right now I know you wish you could be me!

CT Results

Monday I was back at the Doctor's office for a CT Scan to see how everything looked. Today we got the results. Though the Doctor couldn't say I was cured or even in remission for that matter he was pleased with the results. It turns out there are some visible abnormalities in my nasopharynx but they are more than likely just scar tissue from being assaulted with radiation and chemotherapy. My lymph nodes are looking normal as well.

So what's next? Well, next month I head back to the ENT for another scope. Then in June or July I go in for a PET Scan which is when we really find out if the poison did it's job. The PET Scan will show whether or not the abnormalities are scar tissue or not.

All three of my doctors seem very positive and don't anticipate anything other than a clean scan. So, were back to the waiting game. Rather than spend the next couple of months worrying I'm going to be concentrating on continuing to get stronger.

The other piece of good news is that the feeding tube will be taken out in the next two weeks! I haven't been using it for over a week now.

Grandma Chang heads back to Denver tomorrow and I don't know who is having the hardest time with it. I'm sure there will be lots of tears from Me, Grandma and Baby Chang tomorrow. We had to say goodbye to Grandpa Chang on Saturday and that was tougher than I thought possible.

Little Ms. Bossy will be hanging out with Baby Chang and I over the next ten days to help me get back into the swing of things. Then Prairie Dad will be in Houston for two weeks! The last time we saw him was January 2nd. Baby Chang doesn't realize it yet but we are counting down the days!

Turning a Corner

Well, I've turned another recovery corner this week and so far so good. Monday night I took off the pain patch. So far no pain (except when the dry mountain air gets to me), no hallucinations and no vomiting. I realize that the medication is probably still coursing through me but it's off to a good start.

I also have taken over nighttime duties for Baby Chang. This was a big step as she still doesn't sleep through the night and often doesn't sleep in her own bed. Although who could blame her the portable bed she's in has no soft mattress like the big bed or a warm Mommy to snuggle with. So Grandma Chang is back to sleeping in her own bed and through the night for the first time since January 18th.

Speaking of steps Baby Chang has started to walk. As her cousin declared "It's an Easter Miracle". Yes it was Easter Sunday and she took her first solo steps. The girl has no teeth but she's ready to go, go, go!

We hit the pool on Monday and are planning to go again tomorrow. I've yet to try lap swimming I think that has to wait a couple more weeks until I'm a little stronger.

Saturday Baby Chang, Grandma Chang and I head back for Houston. Next week it's back to doctor appointments. Starting Monday I go in for a CT Scan to see how things look. I'll get the results on Wednesday. I must say I'm not looking forward to returning to doctor appointments but I am hopeful the CT will keep me away from doctors for a few weeks...

Don't get cocky about the VOMITING

Well, apparently I was feeling a little cocky about the vomiting last week because on Sunday it stood up, knocked me square on the ass and said "Hey, remember me? Don't think you are getting off that easily!"

On Sunday I woke up feeling very good and decided that I would switch to taking my nausea medication from every 6 hours to "as needed". Why not try every 8 or 10 hours you ask. Well, I was feeling cocky that's why. So now finally three days later I'm starting to bounce back.

Right now I am still on some pretty heavy duty pain medication, in the form of patches. I change the patches every 72 hours. At the worst I was at 75 micrograms and taking vicadin. First I cut back on the vicadin, then I've slowly been decreasing the strength of the patch. One of the joys of pain medication this strong is that you have to step down how much you are taking. If you go too fast all sorts of fun things can happen like hallucinations. Though that sounds fun I had plenty while doped up in the hospital I don't need to go back anytime soon. Seriously feeling people touch you when no one is in the room not a comforting feeling. I digress. I have cut back to 37 micrograms. Tonight is a patch change night and most of the dinner (Grilled Salmon and tater tots by mouth not tube!!!) conversation focused on whether I would go down to 12 or 25 micrograms.

The conversation at dinner started with discussing how in the next 10 days I would be ready to return to Houston and watch Baby Chang all day by myself. I thought that by now I would be ready to take on night time duties but I am still pumping food through the tube each night. Not exactly conducive with a 10 month old who doesn't sleep through the night.

Dad Chang is convinced I need to go to 12 mg, Mom Chang 25 mg, me I'm on the fence. They are both convinced that each time I relapse is right after I change the patch. Though there is a partial pattern I'm not convinced entirely even though I know one of the side effects is nausea/vomiting. In my world if vomiting is listed as a side effect I seem to be right there waving to the porcelain gods. So the idea of getting off the constipation, vomit inducing pain meds is extremely attractive, going too fast is extremely scary. I was hoping writing this would sway me one way or the other but alas the fence has only gotten more in the way (did I just mix metaphors?).

In other news the weather in Denver finally gave us a brilliant sunny day. At 81 degrees we got to spend time in the garden. Baby Chang got over her fear of grass and turf. Yes, believe it or not there is a turf putting green that Dad Chang put in the back yard. A retirement present. Sadly the gardening was enough to put me back in bed for a couple hours but the vitamin D did wonders for my mood and apparently Baby Changs.

Tomorrow is a day for swimsuit shopping. I've been attempting since I first got here to find something suitable but I've struck out. I'm hoping to be able to take Baby Chang swimming with her cousin and Aunt on Thursday. It doesn't really matter what size you are swimsuit shopping blows! In fact getting skinnier hasn't made any shopping easier. It has just made life more fun to say "I had to return size 4 jeans because they were too big." Don't hate me it was the brand. My new pants which fit snuggly are definitely size 6 petite (getting skinnier does make you shorter apparently).

So you'll have to wait with baited breath to see 1. which patch to I switch to and 2. does she find a swimsuit!

It was the best of times, it was the worst of times

I think that title sums up the last year in the best possible way. Today I turn 35 and looking back it has been one hell of a year. However, I'm not sure I would change anything, except maybe a little less vomiting...

I'm positive you are thinking to yourself "Yeah right you wouldn't change anything?!" I've been thinking about it a lot today and really I wouldn't change it.

This year brought the most amazing experience of my life and that is the birth of my daughter. Everyday I get to explore the world through her eyes. She makes me smile, laugh and cry all at the same time. Today she is on the verge of walking and sleeping through the night. She exclaims "Hi" and her smile lights up the room when I walk in, even if I went no further than the bathroom. Her fierce independence is astounding and frightening all at the same time. I like to believe her love for all things musical (especially commercial jingles) is a result of listening to opera for nine months. It has been a change I never could have imagined and I look forward to all that are still to come.

This blog exists because this year brought about the worst experience of my life as well. The day I was diagnosed with cancer will be one I will never forget. Though the treatment and recovery have been miserable they too brought about a change in my life I could never have imagined. I am closer today to my parents as a result of the last three months. I always new they were pretty amazing but I don't think I ever acknowledged it as I should have. Imagine giving up your life, leaving your home and for three months taking care of someone else and their child. Could you be that selfless even if it is your child?

Since December 3, they have only asked one thing "What do you need?". My Mom hasn't slept through the night since the beginning of January as she has taken the night shift with Baby Chang. My Dad has made numerous trips to pharmacies, doctors and hospitals, cleaned up after many vomiting episodes, and tracked and researched my medication. Still neither one has asked that they be put first.

In addition to how amazing my parents have been there are many others who have been just as incredible. Relatives who call and text and relive their own cancer experiences to make sure I'm okay. Friends who bring by dinner so no one has to cook. Loved ones who send cards and letters that just say "I'm thinking of you." All people who I knew would be there but now it's different somehow in a way I can't really explain.

My recovery is going well. As of today it has been six days since I have thrown up. I am eating more and more everyday and water finally tastes like water again. I am walking 15 minutes each day (when it isn't snowing) and hope to be up to 30 by the time I return to Houston.

Do I wish I hadn't had cancer? YES. Would I change it? Not if it meant giving up what I now have, a knowledge and insight that is worth more than all the money in the world.

Who knows what the next year will bring, hopefully a little more wisdom and a lot less throwing up.

The Good, The Bad and The Ugly

Warning this post may include TOO MUCH INFORMATION for some.

I have been waiting to post until I had a few more things to place in the Good Category so here it goes....

GOOD: Treatment is over!
BAD: Some days I still throw up.
UGLY: Even the throwing up is not as bad as the constipation.

GOOD: The ENT said my nasopharynx looks really good.
BAD: We won't know more until the CT Scan on April 12.
UGLY: We won't really know how things look until the PET Scan in May or June.

GOOD: I've lost 30lbs going through all of this.
BAD: None of my clothes fit.
UGLY: I look like the Saggy Baggy Elephant (one of my favorite books as a kid). My butt and boobs hang too low...

GOOD: I can eat solid food.
BAD: My salivary glands are shot so what I can eat is very limited and small in quantity.
UGLY: Some of it leaks out from around my feeding tube.

GOOD: I'm in Denver continuing my recovery until mid April.
BAD: My butt still hurts from sitting in the car for three days.
UGLY: It's supposed to snow tonight.

GOOD: I get to hang out with my sister and her kids.
BAD: They are all sick.
UGLY: We are just waiting for Baby Chang to get sick.

GOOD: I am taking a few more weeks off from work.
BAD: I am taking a few more weeks off from work.
UGLY: My checking account.

GOOD: I took a two hour nap with Baby Chang today.
BAD: Baby Chang took a two hour nap today will she sleep tonight?
UGLY: Baby Chang doesn't take naps in her own bed thanks to Grandma Chang and Mr. Chang.

The Long and Winding Road

Patience hasn't always been my strongest of virtues and right now I'm struggling. I was warned repeatedly that the recovery would take a very long time. For some with head and neck cancers it has taken years to make a full recovery. Not being able to eat foods I love, being very tired, and being on medications really aren't getting to me but throwing up that's another story...

I had a slide backwards last week when I began throwing up again. Most mornings I would feel fine then all of a sudden around 4:30 the nausea would hit. I'd throw up until 1:00 a.m., go to bed and feel okay in the morning. Finally on Friday (Dad Chang's Birthday)I gave in and went and got fluid at the Oncologists office. Four hours later I was feeling a bit better. Yesterday was a good day and today seems even better.

I'm doing a lot of finger crossing that this is the start of many good days to come. In fact I have been able to start eating solid foods. They don't quite taste the way they used to but that will come. So far I've had lasagna, chicken noodle soup, fruit loops and jello. I've been able to drink G2 Gatorade, Sprite and juice, water still tastes terrible. It is now a battle to just get in enough calories as I've lost nearly 30 pounds since this all began. I may have to start a "Buy Mr. Chang some Jeans that Fit" collection... It's amazing how bony my butt has become.

On Thursday I head back to the ENT for a scope of my nasopharynx to make sure everything is looking good. In April I'll have a CT Scan of my head and neck to get a better picture of the prognosis. Right now everyone is pretty confident that there will be no surprises and that the treatment has done what it's supposed to have done.

Well, I'm off to see what kind of trouble Baby Chang is getting herself into. Please keep your fingers crossed that the vomitting has ceased 11 months has been more than enough.

The bell has been RUNG

FINALLY on Monday the bell was rung. Baby Chang helped ring the bell signifying the end of radiation treatment. Afterwards I celebrated by coming home and going to bed, no champagne yet that will have to wait until after the feeding tube comes out.

I have been told MULTIPLE times that now is the hardest point mentally. It will be about 10 days before any pain starts to subside and even longer for my stamina to return.

For now I'm content celebrating the end of treatment and beginning of the rest of my life. I forsee many naps in my near future. In fact I'm off to bed now...

Mom Chang Kicked the Wall

Literally, Friday morning rather than celebrating my Mom was kicking the wall in frustration. As we were getting ready to head for the final radiation treatment my phone rang. Immediately my stomach dropped. Disbelievingly I listened to the technician tell me the machine was down and there was a chance it wouldn't be back up today.

Sure enough the machine did not come back up on Friday. So I'm still waiting for the final treatment. Here's to keeping my fingers crossed that they've figured it out and Monday I'll be ringing the bell...

Home Sweet Home

I was sprung this morning from the hospital right into radiation. Which means FOUR more treatments. The doctor has continued to remind me I have a long road to go still. All of which I knew but I think it is a good thing to be reminded each time.

I'm still using the feeding tube now attached to a pump that runs for 24 hours a day. It's not as bad as I thought being that it's helping stay ahead of the naseau curve.

Today I have felt better than I have in many weeks so we finally got something right. Now if we can get through Friday with no set backs life will be good.

Silence isn't always golden

Well as you can imagine chemo kicked my butt again. Things were looking okay on Monday and even Tuesday seemed like things would be tolerable. By Wednesday I was back at the oncologist getting pumped with fluid thanks to the inability to keep anything down. They were ready to admit to the hospital right then and there but luckily Papa Chang got them to reconsider. We switched up some medications and agreed I'd be in the office Thursday and Friday for fluids.

Seemed like a great idea at the time. By Friday I was willingly checking myself into the hospital. Today is Sunday and I'm still here. If tonight continues to go well I'll be checking out in the morning in time to go to radiation. Checking out with a new accessory. As you know I had a feeding tube put in two weeks ago. Well, to finally get things under control they've added a pump to the tube so I am fed continuously for 24 hours. Seems to be working. The upside to this is that I don't have to smell the formula so I get to imagine my stomach is full of pepperoni pizza or steak! The downside of course is being hooked to a machine 24/7 that comes with it's own sound effects and a pole! Not a stripper pole get your minds out of the gutter... This isn't permanent but may be around for a few weeks. Then I'll get the stripper pole it's supposed to be a great work-out.

Counting tomorrow there are five radiation treatments left. FIVE!!!! That means I can count down on one hand and by Friday it will be over. As you can imagine I'm only a little excited. I know I won't be back to myself by Saturday but at least I won't be bombarded with poison on a daily basis.

Lately the question I've been asking my Doctors is how do we know this has worked or in other words how do we know it's really over. I have been assured that everything is showing remarkable improvement. In a couple weeks I'll head back to the ENT to have some scopes done, then a few weeks later a CT scan, then is a few months a PET scan. After the PET scan they will be able to tell if I'm in remission which everyone seems to think is a foregone conclusion. The word cure won't be official for five years. So get ready for five more years of Chang posting...

So for now I'm going to ask you for your continued thoughts and prayers over the next week. One milestone at a time is how I'm going to focus my energy for a while.

Thanks again for all the love and support it is felt whole-heartedly here in Texas.

Two Weeks to Go

I finally get to post good news!!! On Monday the Radiologist said my scans all look good and the tumor(s) has shrunk dramatically!!!! Also on Monday I found out that I had 13 treatments left to go. So as of today we are down to TEN! Two weeks from today will be the final treatment.

This coming Monday is the final round of chemo. They have decided to change the type of chemo because of how badly I reacted to the last round. It still won't be easy but it shouldn't be quite as bad.

The light at the end of the tunnel is beginning to get a little brighter. The downer is that we don't really know how long it will take to overcome the side effects. Just like everyone reacts differently, they heal at different rates as well. Ringing the bell will signify the end of radiation and I'm not sure what will signify the true end.

A few milestones will be:
1. No more nausea medication.
2. Removal of the feeding tube.
3. No more sore throat.
4. Skin that doesn't feel like a snake or look like a bad tanning bed experience.
5. Taste returns to normal.
6. No more cough.
7. Saliva that doesn't feel like slime.
8. No more dead cancer cells coming out of my nose.
9. I can pick up and play with Baby Chang for more than five minutes at a time.

Here's to the end it can't come fast enough!

I Could Have Been A Contender

Well, it's been another week of ups and downs here at the Chang house hold. On Monday it was back to the Oncologist for a check on the blood, kidneys, etc. After a very rough weekend it turned out I had lost 12 pounds in a week. Seriously I would have won BIGGEST LOSER! Before even drawing blood they had me hooked up to the IV pumping me with fluid. When the Doc came in to follow up he said he was putting me on a feeding tube as soon as possible. At the beginning this was discussed as a worst case scenario, however as the doctor appointments continued on Monday it turns out that it was more likely than not that I would be on feeding tube.

Tuesday morning it was back to the hospital. Dad Chang and I checked in at 8:15 and the procedure which we knew nothing about was supposed to be at 9:15. At noon I was still waiting to be taken to the OR. The lack of communication from department to department, physician to patient, physician to nurse is astounding. If any of us worked that way we would be fired. Finally after demanding answers I was taken back to the OR at 12:26.

I was out of the OR at 1:25 and up to my room shortly there after. This hospital stay was much more restful even though a little painful. Amazingly having a C-Section in May has helped prepare for the hole in my abdomen.

On Wednesday the nurse showed me how to feed myself. And as soon as she left promptly threw everything up...again. Luckily they still let me go home. Since then I've only thrown up once which is miraculous.

Amazingly when this all started I thought not eating would be the most difficult part. As an amateur foodie I couldn't imagine not being able to eat solid food. Really it's not too bad. Don't get me wrong I'm looking forward to the day when my throat isn't sore and my taste returns to normal but for now I'll just take keeping everything down.

A big shout out too New Jersey Mama and family! Thanks for the Sorbet and the cranberry juice tip. Seems that by adding just a couple splashes of cranberry juice to water it tastes like water again.

Today I was supposed to have a CT Scan to determine how many Radiation treatments were left. Sadly the machine was down. So tomorrow morning at 11:00 we'll try again. If my calculations were correct it should be 19 let's hope it's fewer!

Keep your fingers crossed!

Rough Week

As I'm sure you've realized from my silence this week it has been a very tough week to put it lightly. On Monday I had the second (of three) chemo treatments. I felt pretty good that night but by Tuesday morning the nausea was back with a vengeance. By 8:00 Tuesday night I hadn't kept down any food or liquid and it was off to the hospital (more about my eye opening experience there later). Thankfully Dad Chang was with me as it was a bit of a fight to get me into a room and hooked to an IV even though my doctor had admitted me ahead of time.

I was there just over 24 hours. It's Saturday and I'm still struggling to keep anything down. Though today I feel a little less foggy and the nausea is subsiding some I'm looking forward to keeping down what I'm eating.

While I was in the hospital Baby Chang figured out crawling and how to pull herself up. Sadly I don't get to spend much time with her but she makes me smile and remember why I'm going through this. In fact when I asked Mom Chang if I could quit she told me sure but she was leaving and taking Baby Chang with her. I guess for now I'll stick with the poison.

The other positive of this week is that I should be half done with radiation. Unless something unexpected shows up on the scans on Thursday there is definitely light at the end of the tunnel.

Thanks to everyone who has posted or e-mailed soup recipes! If anyone has a tip on how to make water not taste like salt I'm all ears! Right now the stuff makes me gag.

Day 14 - TGIF

THANK GOD IT'S FRIDAY! That's really about all I have for today. The weekend is much needed. Especially as I head into the second chemo treatment on Monday.

Eating is starting to get difficult. So I'm going to ask all of you to send me your favorite soup recipes. Cold or hot soups are welcome.

In other exciting news Baby Chang is quickly learning how to pull herself up to a standing position. She is slowly figuring out how to crawl but usually finds it faster to get to her destination using the army crawl method. Lately she's also been stretching her lungs and vocal chords as yelling seems to be her new favorite form of communication.

Happy Weekend to all!

Day 11 - 13

I miss the pool and margaritas! There aren't many things that you can't do or have while in radiation and chemo treatment. However, there are a few things like not eating raw meat (no sushi), no ordering salads or eating at a salad bar, no swimming, no alcohol and no breastfeeding.

Baby Chang and I have both gotten over the breastfeeding thing. Though there are days I miss the connection I don't miss the ugly, ill fitting bras.

I sometimes have trouble remembering to pass on the salad when I go out to eat but it means I eat more salad at home. On the surface you'd think that isn't conducive to the weight gaining orders but trust me add enough cheese and salad dressing and that's no problem.

The sushi thing is not too big a deal as I figured out how to eat it during pregnancy by eating only the things that are cooked.

But margaritas man I miss margaritas. From the time I found out I was pregnant until now 16 months later I've had 1 and a 1/2 drinks. A cosmo and half a beer. All I'd really like is a HUGE margarita with salt. Sadly alcohol is a no no still. It has something to do with protecting my kidneys.

Finally, the thing I want to do more than anything is hit the swimming pool. While pregnant and nauseous the one thing that made me feel better was doing a few laps in the pool. The radiation is going to do a number on my skin so I can't do anything that might cause it to dry out (i.e. chlorine or salt water). With everything else it seems like the one thing that might make me feel better is hitting the pool.

So I've decided the real sign that I'm over this will be the day I'm sitting poolside with a margarita. Anyone want to join me?

Day 10

Mondays are always a bit stressful as I start a new week of radiation. The morning starts with a blood test at my Oncologist's office. There they check the red and white blood cell counts as well as the hemoglobin level. Today all were lower than they had been but not low enough for them to worry. I of course worry what will happen next week when they poison me with some more chemo (can you tell I can't wait for next Monday...).

Also on Monday I actually talk to the Radiation Oncologist. I get about five minutes to ask if the terrible things coming out of my nose are normal (yes it's the dead cancer cells YEAH), if in the mornings I should look like the elephant man (it doesn't happen to everyone but facial swelling isn't out of the ordinary), and what can they give me for the cough that's keeping both Baby Chang and I awake at night (yet another trip to CVS is in my future). Inevitably I always forget something. Luckily Dad Chang is usually with me and has my back.

I was surprised today at how tired I was though. I ended up going into work about four hours later than planned so I could get a little more sleep. They told me the low energy would come I was just hoping it would be closer to week 6 than week 3.

I got another surprise in the mail today when there were five notices from the hospital where I had my surgery. Luckily they weren't all bills. Included however was a statement that itemized the actual cost of my surgery. THANK GOD FOR HEALTH INSURANCE. Ponder for a moment if you will what you think an outpatient sinus surgery might cost. If you guessed $40,000.00 you are a winner. Yes that is forty thousand dollars. Now of course the insurance company has some insane deal where it appears they will pay about $2,800 of that. WHAT? You say the insurance company pays less than 10% but if you didn't have insurance you would be responsible for the entire $40,000.00. I invite those who think health care reform unnecessary to pay my medical bills for the last year and for the upcoming year. I definitely would be declaring bankruptcy if it weren't for my health insurance.

On a lighter note at work tonight we got to shoot five guns loaded with pyro, hang a dummy, shoot a tenor and watch a soprano stab herself. How was your work day?

Day 9 - Ring My Bell

In the waiting room at the Radiation Oncology department there is a bell by the desk. On the day you finish treatment you are supposed to ring the bell three times to celebrate the end of the journey. Friday I was sitting in the waiting room and there were three people waiting for a relative.

When she walked out she got to ring the bell. They all cheered and lots of photos were taken. Until that moment I had no idea what an occasion it would be. Right now I celebrate every Friday that I have two days off and that it's the end of another week.

I think I might have to bring a bottle of champagne on the final day of treatment I'm not sure ringing a bell will be enough.

Tomorrow begins week three and I start the day with a blood test. Keep your fingers crossed that my white blood cell count has stayed high, as has the hemoglobin. Hopefully I'll also find out tomorrow how many weeks I have left. After 28 days they boost the radiation but they were unclear for how long. Here's hoping for four more weeks instead of six!

Well, I'm off to bed the morning comes way to early these days. Although there's nothing like starting the morning with a smile and hug from Baby Chang!

Days 5 - 8

On Monday I was feeling VERY good the three days off really were at the perfect time. By Tuesday night though the radiation was starting to have it's ill-fated effect. The sore throat started but I fought back with a Frosty from Wendy's! That would be a chocolate Frosty. I'm a traditionalist when it comes to Wendy's, in fact I won't even try the vanilla I think it's sacrilege or at least it needs a different name.

On Wednesday I hit the proverbial wall. I don't know if it was the treatments or having a 7 and a 1/2 month old whose decided against sleeping in her own bed. It could also be the coughing that's keeping me up at night. This apparently is normal as the cancer cells are dying and draining into my throat. I know right now you're thinking I'm really glad I'm reading this EWWWWW. Just be glad I don't describe what came out of my nose this morning!

As I'm nearing the end of week two I'll be happy for the weekend. So far things are progressing exactly as they described and I'm still doing my best to follow Doctors orders and gain a bit of weight. In fact I think I'll break out the Oreos...

New Year's Reprieve

I was granted a reprieve from Radiation on Friday in honor of the New Year. The three day weekend was a welcome respite from the abuse of treatment. In fact by Saturday afternoon I really was beginning to feel human again. I hesitate to say normal because as the Prairie Dad pointed out I don't know the last time I felt normal. But let's not dwell on the morose it's a New Year after all.

On New Year's Day I joined Prairie Dad at his childhood home for their traditional New Year's Day fare. We enjoyed Black Eyed Peas, Cornbread, Cabbage and Chit'lins. Yes the white girl ate Chit'lins. I have to say they tasted like chicken. Well, chicken skin, boiled. If you are uncertain what Chit'lins are I'm going to refer you to http://en.wikipedia.org/wiki/Chitlins.

The traditional New Year's fare from my childhood was enjoyed earlier in the day. It included meatballs, veggies and dip, cheese and crackers and little smokies. Rather dull in comparison...

The weekend feasting continued with some help from the Lifetime Vegetarian (I will come up with a better nickname but it's 5:00 a.m. cut me some slack). He provided us with his amazing enchiladas and applesauce cake. LV has decided to help me obey Doctor's Orders as long as possible. I say bring it on!!!! Especially if it's as good as the applesauce cake.

Part of the reason I'm writing at 5:00 in the morning is that Prairie Dad had to hit the road again. He's on his way to the next garden stop of the "Little House on the Prairie" tour, Fayetteville, AR. As always it was hard to see him go. Though I know this job is the best thing for our family it's not easy to believe that when one of us is saying good-bye. Before my cancer diagnosis Baby Chang and I were planning to spend most of February with him in Toronto, followed by a couple weeks in Florida. We are now in a wait and see. Hopefully we will still make Florida.

Finally, to catch you up on the treatment progress I have good news. The tumors (yes there are/were multiple) in my neck have shrunk already! So with the coming of the New Year my one resolution is well on it's way. Here is to a HEALTHY 2010! May all of your resolutions be easier to achieve but equally as successful.

Day Four - New Year's Eve

Tonight was a bitter sweet New Year's Eve. On one had I couldn't wait for 2009 to move on but on the other I had a lot to be thankful for. 2009 brought the birth of our beautiful daughter. It's hard to wish away a year that brought such a blessing. There is nothing like the joy I feel coming home from work to see her.

Speaking of work I was back at it today. It was amazing to be back in rehearsal and feel normal for a few hours. Now if I had only remembered the nausea medication I might have made it a couple more hours. You'd have thought after throwing up for the majority of the season last year I wouldn't forget the nausea medication. Lesson learned...again.

Now I'm hoping the insomnia that's been hitting at 4:00 a.m. will pass soon. Although it's a good time to catch up on terrible tv.

Day Three

Did anyone get the license plate on that truck that just ran me over? I think it started with a c-h and ended with and e-m-o!