Saturday, September 27, 2008

終於有答: 是準血癌!

sep 27, 2008(Saturday)
Finally, I was diagnosed with pre-leukemia(準血癌)


When my brother and sister came to visit me this afternoon with the Chinese complementary soup (補湯), one of the doctors of UCSF hospital came in and told us that I have pre-leukemia(準血癌). It is pre-1st-stage of leukemia, so the treatment I am going to take is not as tough as the chemotherapy.

He also said, I need to do the treatment 7 days, start from today. After the 7 days treatments then I could go back to the previous hospital to get a rest, after a couple of days, then I could start to do the rest treatment, it takes 3 weeks.

變色體混亂了

the doctor also said, my pre-leukemia is caused by 我的變色體混亂了, so my bone marrow is unable to make health blood count. Thus I need the help of medicine to correct my DNA, and hopefully get the 變色體 back to normal.

the medicine I am taking

the medicine which are used for this treatment is named as Azecitidine (also named as Vidaza), usually it is used to treat bone marrow disorders and leukemia.

the side effects of that treatment are very similar the the chemo drug, after the 1st infusion(第一針注入), I felt tired and weak at once, and some other side-effects. However, this is only some minor issue, what we felt happy is that we eventually have the answer and the treatment solution.

Thank God, and thankyou all praying for me.

Wednesday, September 24, 2008

抽骨髓驗,看是不是血癌?

sep 12, 2008(Friday)
Bone Marrow Biopsy


When I was still in ICU, my oncology doctor Dr Stanton came to see me, and asked me if I wanted to do bone marrow biopsy, because he thought there might be something wrong with my bone marrow which caused my WBC and PLT drop-down daily.

After the testing, the result is negative, that means my bone marrow is OK. But, why my WBC & PLT are still unable to reproduce themselves? No one knew the answer yet up to that day.

sep 16, 2008(Tuesday)
my oncology doctor told me go home now


after 2 day of my brain operation, my head kept bleeding, so another doctor gave me 3 bags of PLTs IV and 2 bags of blood transfusion, hopefully my brain would stop bleeding if my Platelete count could go up to a certain amount, otherwise I might need to do another brain operation.

thank God, after the 3 bags of platelet IV, the bleeding in my brain stopped automatically.

However, when I was getting better, my oncology doctor told me I could go home now. I didn't know what was in his mind, becauce my WBC & PLT are still unable to reproduce themselves. Once I went home, who would monitor the up-n-down of my CBC? Up-to-that moment no doctor could find any solution yet, that means I could die any time if I go home, so I rejected their advice and asked stay 2 to 3 more days.

Thank God, some other doctors are very kind and nice, agreed with my worry, so I was allowed to stay 4 more days, and during those days the nice doctor also gave me 4 bags of PLT IV, one for each day.

sep 19, 2008(Friday)
Being Transferred to a 3rd hospital, a very big one


Finally, my oncology doctor realized my case was not as simple as he thought, so he requested me to be transferred to a bigger hospital, UCSF--University of California Medical center. This is a top 10 hospital in U.S.

According to the UCSF hospital doctor's instruction, I need to do another bone marrow biopsy to see if i really have leukemia. Because the symptoms I got is very similar to leukemia. The 1st group of doctors said they are pretty sure I am 90% in leukemia or pre-leukemia, and need to do another chemotherapy.

I asked them if I don't take any chemotherapy, how longer can I live?

The doctor said:"four weeks."

Saturday, September 20, 2008

向神家說Hello

My Dearest Prayer Partners,

After reaching to the gate of Heavenly Father's home on Sep 7, 2008, I have learnt that it is not the time for me to see my Father yet, He sent me back to the earth via a wonderful brain surgery doctor's hand.

Here is the brief record for the past 2 wks:

sep 7, 2008 I was in ER

I had a fever since sep 6, 08, after that day my fever was up to 102F so I decided to go to Emergency Room at 5 pm. after a couple of checking the ER doctor told me I would be OK and could go home afterward, however, when I mentioned my worry of my low PLT count(血小板奇低) to her, the ER doctor gave 2 bags of PLT IV (Platelete Infusion); at that moment my head suddenly became very heavy & heavy, about 9 out of 10 scale, so I told the ER doctor & she thought my headache might be controllable by intaking 2 painpills; however, my headache was still getting worse and worse; and started losing my mind, eventually I was totally fatal.

sep 8, 2008 I spent 6 days in ICU

Choice for Life & Death--Love is Everything

after being fatal, I didn't know what happen to me, so the following brief record is told by my dearest family:

I was immediately sent to Scanning room to scan my brain and found out 1/4 of my brain was filled with old and new blood, the new one still non-stop bleeding, so I need to be transferred to a bigger city to a bigger hospital to see if I could be saved by doing brain surgery; however, once I was sent to that hospital, the brain surgery doctor didn't have much confidence, it is because the report of my PLT count was only 14, it was impossible to have any surgery at that level, since it would cause further non-stop bleeding; secondly, even the surgery might be able to do, I still would have the chance being a death person; so he asked my family if they want him to save my life. It is really a tough question to my family.

Life and Death. If the saved life is working properly, then it would be OK, otherwise it would be a burden to my family if the saved life is just like a death person. However, my family loves me very much, they willing to take the burden and told the doctor: they wanted him try his best to save my life.

Once they have the concernment, wonderful thing is happening, my lastest PLT count come out mentioning the result is 110, meet the requirement level to do surgery. thank God and Thank my family's love.

So I am able to write my journal now.

Saturday, September 6, 2008

昂貴升白針之副作用

骨痛

每種能醫治某種病,卻又能帶出某種副作用。升白針,無論貴或平,也不例外。

昨日醫生助理很憐憫我,免費給我注射昂貴的升白針Neulasta(可譯作白血球生長素),三千美元以上一枝,能維持十二天的日子,只是不知這藥屬效力高,故副作用在今天很明颢出來了。

骨痛--令我卧在床上,轉輾反側,無法入睡;上兩次打便宜的那隻升白針Neupogen,也不用吃止痛藥,今次卻要;

發燒--早上十時半許量體溫,是100度,向神祈禱求不要再升;

呼吸出現急速(acute respiratory distress syndrome--ARDS, 急性呼吸窘迫症候群)--今次明顯需要更多力氣呼吸了;

輕微頭痛--昨夜及今天都感頭重重,無法安心入睡,連吃有催睡的Tylenol,也不能使我可安然入睡;

再看下去時,發現這隻昂貴藥原來有可能會損害我的肝功能,真是一個循環。打升白針,主要是針對肝炎藥拉低我的白血球指數;打了升白針,卻原來又可能會令脾臟破裂,帶來更嚴重的肝病問題。真是只有向天仰望,祈求神施憐憫!

肝炎醫生覆我昨日的電郵

Mena's question:

Dr Steady,

Sorry, yesterday I mis-heard the WBC result.

this morning I got the result from the Lab, and noticed the yesterday WBC is only 1.3, the raising rate is only 0.3 even after injecting 300mcg Neupogen,
and within one day the WBC will drop down again, that means I need to keep going to do blood drawing for my CBC test, and need to have Neupogen injection very frequently, so, I wonder if I could reduce the hepatitis medication again,
let's say, from 1/4 tablet every other day to 1/4 tablet every 3 or 4 days,
and eventually stop this medicine.

I request this, because my WBC is still very low,
and my PLT is getting worse, the following symptoms now I have:

1/ a rash of pinpoint-sized reddish spots already appears on my lower legs;
fortunately the rash is still in control.
2/ prolonged bleeding cuts;
esp after the injection and blood drawing,
3/ finally, I keep coughing and feel fatigue very easily during this week.

My next week Herceptin IV has been postponed to the following week,
that's the 2nd time being postponed due to the extreme low WBC.

thus, I need your advice to see if it is possible to reduce the medicine again.
thanks a lot.
Mena
2008.9.5

Steady's reply:

Mena,
You can reduce the Baraclude to 0.25mg every 3rd day. If you wbc come back to fast while on minimal doses of the antiviral agent(抗病毒劑) your hep b can flare(突然增加,向外張開) and cause you to get very, very sick.
Dr. Steady
2008.9.6

May God bless your prayer.

Friday, September 5, 2008

先恩典、後考驗

先恩典

第一個恩典
一個癌症康復者又有肝炎病的人,若正處於白血球、血小板極度低水平之時,雖不用上班但生活原來也挺忙的。

因他要休息的時間要比別人多,晚上九時許會因身體極度疲累而不得不乖乖上床睡,疲而不能憇睡的情況會令他一夜沒覺好瞓,因而早上起床的時間也就不能太早。因此,每天可活動的時間,非常有限。

起床後,就是吃營養奶早餐及出入醫院診所的時候,回到家,雖說升白湯在這階段似再沒效用,惟也不敢放棄繼續煲這曾一度幫助我白血球提升之升白湯;期間鮮榨五六種生果,以補肝及補血,今天榨的包括:香蕉(補白血球)、紅菜頭(beets, 白血球低時要煮熟,補肝補血)、青蘋果红蘋果各一(補血又補肝)、奇異果(增強抵抗力)、紅蕃茄(補血,白血球低時要用滾水燙一燙,)等等蔬果,多了的分量也連老媽及家人可喝。

這是神給我第一個恩典,讓我至今仍在自我保健上,有能力服侍自己,致家人可安心去上班。感謝神的恩典。

第二個恩典
今天十一時到癌症診所打升白針,本來預約要打的一針,是那隻較便宜的Neupogen(若是我昨日打的分量,一針300mcg,約要US$280),但今天到了診所後,護士竟給我打那隻昂貴的升白針Neulasta(一針要US$3,000~6,000不等,視乎病人所屬之醫保的bargain power,且只保在化療期打的一針)。我竟此時意外地可打這昂貴針,這是神今天給我的第二個恩典。

在打這昂貴針之前,護士向我解釋為甚麼會有這轉變,原來是因為他們查過我的醫保,發現癌症診所不能替非因化療導致要打升白針的人打升白針,不然,醫保不會代病人付錢(護士說,昨日那枝針醫保可能不付錢,但他們仍嘗試向醫保開單,看看我的醫保MedCal願不願代我付),因此在這等待期間,他們找到一枝有病人早已付了錢卻後來沒打的升白針Neulasta,他們這是不常有的額外置備。感謝神及時的供應。

這枝昂貴升白針Neulasta與昨日打較便宜的升白針Neupogen的分別,就是前者提升白血球的功能可維持十二天,後者則只能維持一天,故凡打後者的升白針,便要天天打。

後考驗

帶著感恩心情到藥房取肝炎藥,藥房職員告知,我的醫保說我的受保期已屆滿,故若要取這隻Baraclude肝炎藥,我得自己支付US$876。

受保期已屆滿,若代表著我往後的治療費用也不會保,這可真是一個大考驗呢!

此外,這會不會是神叫我停吃肝炎藥的信息?好叫我的白血球血小板不用在肝炎藥的影響下,得以逐漸康復過來?我現在打了那枝可維持十二天的升白針,就真要多多禱告求主讓我的白血球能自己回升,好叫十二天後不用再依賴升白針。今夜又要電郵聯絡肝炎醫生了。

想起這考驗,便想起禱告,把一切交託給神,求神開路,也求神指引我該如何做,如何在等待神恩之間盡自己的責任。今天讓自己在主裡靜一靜,明天再看看如何聯絡醫保,查看可否延長醫保期。

所以,做病人是相當忙碌的!

Tuesday, September 2, 2008

今日情況好許多

今晨回朋友的電郵時,身體與精神狀態都不太好,故寫了以下的電郵回她:

...謝謝你的電郵及詩歌,
今晨卧在床上聽,很舒服,多謝。

雖然上周六急症室醫生決定不給我打升白針,
要讓我的白血球自己回升,但今日身體明顯弱許多,
這是白血球不升卻降的蹟象,故在盡了自己責任之後,
也就只能將一切交給全能全知的天父了,
相信連小鳥也看顧的天父,也必定會看顧我。

再次謝謝你們為我祈禱!...

回了電郵後,才想起自己未吃早餐,「身體明顯弱許多」,原來是因為飢餓之故,於是匆匆放下一切去吃早餐。吃過後,身體不再弱了,反甚精神。呵呵,病了後的我,真是烏龍!

上午十時再去化驗室抽血驗白血球,之後,十一時許到公園附近的Starbuck嘆上午茶,在温和的陽光下寫日誌及靈修,非常舒服寫意。

其實真要感謝神,我整體來說,感覺都是好的。若不是醫生來電,囑我去醫院驗這驗那,或不是有白紙黑字的報告,顯示我仍是個病人,我就根本不覺得自己是病人,所以每想起自己病也可病得如此精神,就會非常感謝神。

不過,一到傍晚,我全個人就會疲軟得很,故常很早要上床見周公。