Monday, November 28, 2011
I've been meaning to post for a long time but it gets hard sometimes. Every time I sit and try to write about the happenings lately - I tend to get emotional.
I has been eight months since I've learned of my bone mets. I suppose I'm doing better than I thought I would be doing at eight months, but in a lot of ways - I'm also shocked at how quickly my life has turned.
I went from running a business, being a semi-single parent (the MR was working in Korea for over four months), running around cooking, cleaning, and taking care of a Kindergartener with a million after-school activities - to being almost bedridden.
How life can change so quickly.
As I approach my 33rd birthday, I can assuredly say this is not the life I had envisioned for myself. It has now been three years since cancer touched my life. I'm thankful to still be alive but at the same time I would much rather not have had to deal with everything I've dealt with these past three years.
Three years ago I was confident. I had a kick-ass attitude and I was sure I was going to beat this stupid, little disease called cancer. I was afraid - sure - but I was also extremely optimistic and thought that if I could find the best surgeon and the best radiation oncologist then I wouldn't have to deal with this cancer again for a very, long time.
I had two and a half years of a semi-normal life before it was shattered early this year by news of my metastases.
I have to admit I knew something was up even before I had the scans that confirmed the cancer had returned. My BFF got married in March of this year - I was her matron of honor. We have been friends since we were 14 years old and I have dreamed of her getting married forever. Do you know how long I've been waiting for her to finally get married? Do you know what I did to get her married? LOL. Let's just say I put a word out to EVERYONE I knew that I had a single friend who needed a man...
NOTHING was going to stand in the way of her perfect wedding. I made sure to schedule my scans for the Thursday following her wedding because I didn't want anything to ruin her special day. I figured she would be away on her honeymoon by then and everything would be just peachy.
Two days before her wedding - I got sick.
I thought it was a cold and I had to skip the pre-wedding festivities (brunch and spa-day) because I wanted to make sure I was in top form for the actual wedding day. The night before the wedding my fever spiked up to 105 degrees and against better judgement I refused to go to the ER and instead stayed in bed taking Tylenol and throwing up. I literally threw up ON my bed because I didn't even have the strength to lift my head and aim into a trash can. All I can say is thank goodness for heavy duty mattress covers. =/
I was terrified to go to the ER because at the time my parents were still working full-time and the MR was in Korea and I was Munchkin's only care provider. I knew that if I went to the ER they would keep me there and that would mean not only would I miss the wedding but Munchkin would be without both parents.
Yes, I was thinking illogically and being totally irrational.
I know someone would have taken care of Munchkin and I know I could have missed the wedding - but my fever induced state wasn't processing things correctly. On the day of the wedding I couldn't get up to get make-up done. I told the wedding party that I would sleep all day and try make it to the ceremony. By noon, it was obvious that I wasn't going anywhere...
I missed my best friend's wedding.
Her cousin took my dress and my place in the line up. Munchkin was a ring bearer and even he was late and didn't have time to get his hair done. I wasn't there to see my BFF walk down the aisle, I wasn't there to see Munchkin walk down the aisle as a ring bearer for the first time, and I wasn't there to see my BFF kiss her husband and seal the deal.
I missed it. I missed the wedding. Everything was a nightmare.
While lying in bed - utterly sick - I had this nagging feeling that the fucking cancer was back.
Through the help of a friend (don't report us!) I got my hands on antibiotics the night before the wedding and was able to feel somewhat normal by the evening. Luckily, the wedding was very close to my house and one of my other friends was able to pick me up.
I made it to the reception JUST in time to recite my MOH speech. I was an utter mess and I doubt anyone understood a word of what I was saying. Immediately after my speech, I kissed the bride and headed home to rest. I passed out the second my head hit the pillow but I was content because I was able to get a few pictures with the bride. I still feel incredibly guilty about having caused such a ruckus on what was supposed to be a perfect day. Never in a million years did I think I would miss my best friend's wedding.
The following Thursday I had my CT's and they confirmed my suspicions. The cancer was back and I was also recovering...from PNEUMONIA.
Yes, I could have died. I now know that next time my fever spikes to 105 degrees, to just go to the damn emergency room.
This second battle with cancer is different. My confidence is no longer there and in many ways I've become complacent. I no longer believe that I will beat this. I'm more pragmatic and just hope I can treat the symptoms and extend my life for as long as possible.
I'm not ready to die.
I've been through four separate courses of radiation. First it was my T-spine in May, my right hip in July, my L-spine in August, and now I'm currently getting radiation to my left hip. As one of my DR's said to me recently, "radiation works beautifully" on me. The spots treated earlier in the year are all shrinking and healing and my right hip looks as if the bone is even reattaching itself.
I'm currently in a lot of pain because I had a compression fracture on my L-spine. The radiation helped TREMENDOUSLY and that tumor is no longer growing, but I'm told the pain I have now may be chronic. This means for the first time since my diagnosis I am actively taking pain killers around the clock. Sometimes the pain killers do not work. During those moments of agonizing pain I feel as if the world is closing in around me and I'm dying - right there, right NOW.
I have gone from walking, to being on crutches, to walking, to being in a wheel chair, and to walking again. It is amazing what the body is capable of doing. My body is destroying and repairing itself on a daily basis. I was having difficulty walking because of a tumor on my left hip bone but after a week of radiation (with two more weeks to go) the pain has already subsided substantially and I am again walking without a limp.
I was also lucky and my insurance company approved an experimental drug called Sutent off-label. I took it for five days at the full dose before I had to stop because of all the serious side effects. The drug made me WORSE than without. I'm now recovering from the drug and will take it again at half the dose. I've spoken to a few people who were able to stabilize the growth of their ACC while on this drug - so I have lots of hope.
I hate drugs. I always hated drugs so being dependent on them is humbling. I can't stand the side effects and I refuse to take more drugs to combat the side effects.
The pain from the bone mets is what drives me crazy. I wasn't able to exercise until recently so my lack of activity has caused my legs to deteriorate into skinny, bony, scary looking excuses for limbs. I weigh just 105 pounds - my weight in high school. My lack of appetite is scaring everyone around me but food is the last thing on my mind these days.
Three years ago, I had no worries and life was moving along blissfully. Business was good, the MR was set to start working under his father, Munchkin was growing up to be a smart little kid. My biggest worry at the time was whether to buy my first Chanel caviar jumbo with gold or silver hardware (I got silver).
It all came to a blow with just one CT scan that showed a mass in my sinus.
Life is unexpected.
You will never know what tomorrow holds for you so be sure to stop and reflect.
Take a moment and be thankful.
Sunday, October 16, 2011
It has been a long time, no?
We spent our summer in Seoul and despite my physical limitations, we were somehow able to travel to Busan, Gyeongju, and Andong. While in Gyeongju we didn’t book a hotel beforehand and ended up staying at a really dilapidated, stinky, gross hotel. I didn’t even want to dare try the food, so I made the MR drive us out onto a row of restaurants that we had passed by earlier in the day.
This restaurant was just about to close their doors, but the owner must have seen the desperation on our faces because she turned the lights back on and told us to come on in. THANK GOODNESS. Honestly, looks can be so deceiving. As we sat down to eat, I couldn’t help but notice the old, rickety windows, the wallpaper coming apart at the seams, the stains on the floors and tables and the tiny, gnat-like bugs flying overhead. I was almost about to suggest to my family that maybe we should leave and find someplace else but the graciousness of our host was too much to turn down so we sat and ordered the chicken soo-yook, and two kalgooksoos.
While we were waiting, the owner came by and gave us our first course, mook moochim – on the house. She told us that the mook was made by her and even the vegetables were grown right outside in the backyard. It was absolutely perfect! I’ve never tasted mook so good. It was the perfect texture and our hungry stomachs were so grateful.
My little brother had never tried dong-dong-joo before so we ordered this for him. This was also made at the restaurant. Dong-dong joo leaves a nasty hangover and the taste really takes getting used to. Needless to say, no one finished it and this whole thing was pretty much left over. =P Twenty-one years old – we are no longer…
The kalgooksoo came out and it was SUPERB! The broth was made of chicken, but you couldn’t smell any of the meatiness (which sometimes gives me a headache) and the noodles were also homemade and just really chewy and delicious. We were in foodie heaven.
After being so thoroughly impressed with the food, we decided to go ahead and order some potato jun (which I will post a recipe of one day). Once again, everything was homemade and this was perhaps the best potato jun I’ve eaten in my life. It was even better than my current favorite – Gobawoo.
And finally, the main course came out. It was chicken soo-yook (basically chicken soup) made of an organic chicken. I’m not sure if you’ve tried Korean-style organic chicken soup but usually the meat is very gamey and has a distinct odor to it. That was not the case at all with this soup! My husband – known for NOT liking chicken, devoured this and ate second and thirds. In the middle of the meal Munchkin loudly declared, “This is the BEST chicken I ever ate!” It really was GREAT.
Garlic jjang-ah-chi. Also homemade and delicious.
The sticky rice which consists of chestnuts, red beans, and other types of beans. It is a perfect accompaniment to the chicken.
Cucumber salad – Korean style. Fresh, crispy, and all home grown.
This was the aftermath of our meal. Four adults and one child. It’s almost embarrassing how much we ate. =P
On the way out the owner pointed to the side and I saw her stash of ingredients. The picture on the left is where they make all their dwen jang, gochu jang, soy sauce, etc. I took a picture of the restaurant door since it was too dark outside to get a decent picture of the restaurant. I hope we have the opportunity to visit this place again in the future.
So that was ONE highlight of our trip to Korea this summer. There were many other highlights but I’ll save them for a later post.
We are now back home and Munchkin has entered the first grade. He is growing leaps and bounds and the maturity he has shown in these last couple of months is astounding. He is bringing home excellent grades and is adjusting well to a new classroom, teacher and new friends. I’m so thankful that I have a loud, bubbly, energetic, fear-no-one, I’ll-try-anything-once type of kid.
He recently asked me, “Mommy, can I go sky diving?”
“I think you’re a bit too young for that baby.” I replied.
“No! I can be attached to your chest and go with you,” he countered. Allrighty then.
That’s the kind of kid I have. =P
Friday, October 7, 2011
I’m still going to continue retooling this blog so it might go offline again in the future, but don’t fret. I will bring it back eventually. Hopefully new recipes are on the horizon.
P.S. Yes, I’m still alive. Just in case you were wondering.
P.P.S. Did you realize I have over 150 recipes up on this site? I sure didn’t! I might just have enough recipes for a cookbook…
Thursday, October 6, 2011
“Remembering that I'll be dead soon is the most important tool I've ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure - these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.” -Steve Jobs-
To understand what an impact Steve Jobs made on the world, you need to look no further than my own mother. She is in her sixties and has never really used the computer, let alone the internet. For her sixtieth birthday, I bought her an iPad. I’ll admit that I secretly hoped that she wouldn’t learn how to use it and then I could *conveniently* just use said iPad myself. Well, I gave her the iPad in March of this year and I haven’t seen it since. I thought that she would rarely use it or at the least, we could *share* it. My sixty year old mother is now surfing the internet, watching old school Korean dramas via Crunchy Roll, sending/receiving emails, buying stuff on Amazon, playing games like Mr. Giggle – heck, she even has Facebook! At any time in the day she has downtime, I can find her curled up on the couch with her iPad in hand.
That is what Steve Jobs did. He was able to connect people to the world in a way that wasn’t difficult or intimidating.
Rest in peace dear sir, and fu*k cancer.
Yes, the blog is up and running again. I will be back with an update on myself later.
Tuesday, August 2, 2011
I just wanted to give readers a quick update.
I was walking on crutches for about two weeks.
Then I progressed to a cane for about a week.
As of last week, I finally rid of the cane and have been walking on my own. I’m still limping but I don’t care – I’M WALKING AGAIN.
My parents tell me my walking is better than before I started radiation.
I feel pretty great and was able to go around town all day yesterday without feeling too tired.
So…we’re off to the Motherland tomorrow!
I will update with food from the streets of Seoul.
Saturday, July 9, 2011
For any normal person a simple fall probably wouldn’t mean that much.
For a person with a tumor pressing against the hip joint – a simple fall means now having to rely on crutches to walk.
I feel so stupid.
It was a freak accident.
Earlier in the day, Munchkin had been running back and forth from the kitchen exclaiming he was going to make ice cream. I have no idea where he *learned* how to make ice cream but the kid was freezing milk and water while adding honey and shaking the contents everywhere.
I walked into the kitchen to put back the guacamole I’d been enjoying into the fridge. I turned and took a step into a puddle of water on the floor. I slipped and fell on my back. The pain reverberated up and down my leg and I knew I was in trouble. FML.
I was home alone.
After the fall, I couldn’t move for a long period of time.
During that time, all this anger started to boil up.
I was angry that I was sick. I was angry that I might die soon. I was angry that I probably wouldn’t live to see my son graduate elementary school. I was angry that I can no longer plan things for next year knowing that there’s a chance I won’t be here next year. I was angry that THIS was my life.
I was pissed off and incensed that I couldn’t get up!!! Sitting there on the kitchen floor with no one else in the damn house and realizing that THIS was now my life got me so angry.
This anger somehow forced me to finally get up off that kitchen floor and make it back to my room and I broke. In the confines of my room, with no one else in the house – I was finally able to let out all the pent up emotions from the last four months.
This cancer business is no joke.
Fortunately, the next day, a series of x-rays showed that I did NOT fracture or break anything in my hip or leg. *happy dance* Why I can’t walk and put any weight on my leg – I do not know. My doctor assumes that I just injured it badly and told me to use my crutches for the next few days and test the leg out day by day (in 48 hours I can already put more pressure onto it than I could that first day). He also prescribed me a pain killer. This is the first time since my initial surgery that I’ve had to take any prescription drugs for pain. As I’m writing this post – I feel high. =P As much as I hate drugs, I know without them I wouldn’t have been able to sleep at all the past couple of days.
I can’t wait to wean off these drugs.
Most importantly, I can’t wait to walk again.