😳 Endgame?🧎‍♀️20200916

從被告知我的狀況有多糟之後，我腦袋糊了、鈍了、傻了、孬了。

自上次發文我抽了三支動脈血、打了8-10 支皮下組織的抗凝血劑、埋針拆了又埋。點滴打了抗生素、利尿劑，抽了無數次的血，和拍了好多 X 光。

好希望不是針對 chondrosarcoma 的標靶藥，施展一點魔法，讓 X 光有點好消息，使醫師滿意。

然而真實的情況確是我的氧氣越用越濃，從鼻子吸氧，換成面罩式的，昨晚換成全罩式的。

醫師給我的感覺是，my days are numbered.

也許我真的腦袋糊了、鈍了、傻了、孬了，覺得自己命不該絕；但卻又不時的和山姆抱在一起痛哭。

我的命、我的動力、我的寶貝， Andrew 還這麼小耶，我怎麼可以離開他？把拔知道要去哪裡幫他買帥氣的衣服嗎？把拔知道他愛什麼玩具嗎？誰比媽媽還更知道怎麼安撫他和講道理給他聽？誰比媽媽知道他心裡有事，而沒說出口？

他會不會很快的就忘記媽媽？他會不會在心裡恨媽媽？他會不會因為沒有媽媽在同學前面感到自卑？

我的寶貝來看媽媽，手做了一束花，送給我。之後他說：Mommy, now I am going to give you the best present in the whole world. Ready?

說完，他張開雙臂用力的抱著我，好久好久。

Mommy, when can you come home? I miss you so much. It’s like my big and favorite toy is missing. I want you to come home.

Am I your big toy?

Uh huh! And my favorite one.

Mommy will do my best baby. My very best. I am not giving up, but I do need some luck.

天啊～～～～～祢可以繼續折磨我，但讓我留下，再陪陪他好嗎？

而我的朋友們，我真的不知道我們是否該見面了，還是等我好一點？？？？？

我腦袋真的已經糊了、鈍了、傻了、孬了。

🥺 鏽鐵媽媽 💔 20200910

Andrew 知道媽媽要去急診前說：Mommy, I want to go everywhere with you. If you die, I will die with you, so we can stay in heaven together.

今天血液腫瘤科主任過來，說了兩個重點：
1. 肺栓是左肺有小血塊
2. 另外 CT 還發現 Chondrosarcoma progression....影像中又有看到腫瘤（但不知道有多大）

山姆被醫師叫去門診找醫生，回來後，山姆深呼吸了一口氣說：不好。
醫生認為我已經轉移到肺，上次開完刀到現在，變得更多，而且一小顆一小顆的。

現在只能吃一個標靶藥，看看能否消滅他們，副作用是肺積水，但好處是吃的藥可隨時停。
而這個標靶藥只是有案例似乎對軟骨肉瘤有用，它主治是血癌之類的。

若標靶藥沒用，我的時間就開始倒數。

今天剛好有一位仙女和我討論「真正真心的快樂」我說我有過：和山姆在一起的時候；我們年輕，我們真心相愛，沒有什麼事情可以阻撓我們。當時的我真心覺得是我這輩子最快樂的時光。

Andrew 是我的心頭肉，他讓我多快樂，我就有多悲傷。但有了他，我這一生完整了。他的體貼、乖巧，讓我寧願活受罪。

若我的時間正在倒數，除了 Andrew，我沒有什麼遺憾。但若你看到他，請告訴他，媽媽有多麼愛他。（這樣子就夠了，其它不用再加油添醋）

若標靶藥有用，一個月九萬多的藥錢，吃一輩子，讓我擔心。

每個人的生命長短都已經註定好了。我好好把握接下來的時間。

1. 🔘For Starters

June, must be my favorite month of the year; bright sunshine, birds tweeting, butterflies’ wings fluttering; Sam’s Birthday, my birthday, our wedding anniversary, the list could go on and on. If I closed my eyes, I could vision the colors of June, macaron blue topped with white sugar powder. I could also smell the scent of fluffy cotton candy. I love June. I live for the summer.

All of these changed on the day of June 1st, 2015. Lying in the recovering room after my 16th surgery, shivering and shaking from the waking of anesthesia, with my coarse and meek voice, seemingly like my last breath, I asked the nurse, did my toes move? “No, I am sorry.” With that, I let myself fall into the power of trance.
I wasn’t too worried. My previous 15 surgeries always had ups and downs, Sam and I have waved it all. My toes are just in a short coma, they will be awake in a few days, just like before.
Never did I know, how naive I was this time.

I have Chondrosarcoma, a type of tumor which occur mostly in hips, pelvis, and in the limbs. It is resistant to radiotherapy and chemothrapy. For me, it nests in my spine. There was nothing to be done, except surgery after surgery, before it suppresses my spinal cord, and effects my lower limbs functions.
It has remained low-grade for the past 18 years, meaning it’s not spreading or taking your life, YET. I am just stuck in a limbo, there’s no getting out; trapped in a dark hole that engulfs you without a breather.

I tried to be pious, I ate everything, from herbal to lizard skin; I tried every treatment there is, the damned tumor hunted me everywhere with no sign of giving up.
There was a doctor in a famous Taiwan Cancer Center who dismissed me by saying, “There’s nothing we can do for you. You will end up in a wheelchair anyways.”

2011, we decided to try proton, it seemed there might be a chance of getting rid of the tumor. We contacted the Accredited hospital on the East Coast, the cost was more than a million dollars. Not if I win the lottery would I have that kind of money. We then found the hospital on the west coast which was the first to have proton machines, the cost was much reasonable, $100,000. They told us, the cure rate is 80%, and it’s going to be a “radiation vacation”, relax, and enjoy the ride.
I brought so much hope and anticipation there, but came home in a wheelchair, my legs were failing me. Yes, the rad-vacay was another failure.

Finally, Dr. Huang from the Veteran’s Hospital was the only doctor who was willing to take me under his wings. He was blunt, “You might be paralyzed on the table if anything went wrong, but I will do my best.” That was 2012, my 8th spine surgery. After the surgery, and physiotherapy, I was learning how to walk again. In less then three months, I was pregnant.