GINNY'S PASSING

I'm sorry I did not post sooner but I couldn't bring myself to post the news that Ginny passed away last Wed, Feb 15 at 7:50am.  She had gone into Mercy San Juan hospital on Monday night for a procedure on Tuesday afternoon to help drain bile from her clogged bile ducts.  The procedure was suppose to be minimal risk but her body was simply too weak to continue.  She actually came out of the procedure OK and her vitals were good when I checked in with the nurse at around midnight.  Then I got a call from the nurse at 6am or so and I knew it was bad news.  The nurse said to come to the hospital right away.  I grabbed Christopher and we rushed to the hospital.  We got there in time to be with Ginny when she passed.  I'm almost certain she knew we were there because she made some noises and tried to lift her chin when I started speaking with the nurse and the nurse said that this was the most response she had shown since her vitals plummeted.  We spoke to her, our parents arrived and spoke with her and then they told us she had passed.
The funeral service is tomorrow, Wed, Feb 22 at 1pm.  Ginny's obituary can be found on http://www.sacbee.com/, click obituary then search for Chang, Ginny YC.  The obituary gives info about the funeral service.  Please sign the guest book so we share your memories of Ginny.  We are able to print out the comments to keep in a bound book form.
Thank all of you for your prayers and good thoughts during Ginny ordeal.  She absolutely appreciated know so many of you were reading this blog.
Hug your loved ones a lot.  Take lots of videos and photos.  Life really is too short.
Dean

BIG SCARE AVERTED

This is Dean again.  These past 2 weeks have been especially stressful.  First time I'm losing sleep over Ginny's condition and my brain's going a mile a minute.  Sorry for the long blog - it le's me decompress.
On the previous blog, I said the oncology nurse had called on Monday to say Ginny's liver numbers went down a little.  That Friday, Feb 3, Ginny brought home the labs results (from Jan 27 blood draw) and only 1 number had gone down - I don't know why the nurse told me the numbers looked better.  The critical liver functional numbers had all gone up and her bilirubin was highest ever - Ginny was even more yellow.  Tough weekend worrying over these results.  I emailed the liver embo doc to make sure he saw the results.  He emailed back on Monday and said that her most recent lab results (from Feb 3 blood draw - I know hard to keep these dates straight) showed the numbers were holding and one number was significantly down (he had not seen the results from the Jan 27 blood draw).  So I made a table showing the increase in trend of her numbers and the reason for my concern.  He wanted Ginny to come in the next couple of days to get fluid drained from her abdomen.
We went the next day so this doc can do the procedure and he did an ultrasound exam of her abdomen for a long, long time.  This usually means something is not good.  He then told us that he suspects her portal vein had thrombosed (clotted shut).  The portal vein takes all the blood carrying nutrients, waste products, minerals, etc. from the stomach, intestines, colon, pancreas, spleen, other abdominal organs to the liver for processing.  If you Googled "portal vein thrombosis", you will see it is usually a catastrophic event.  But then he says that he suspects this occurred about 3 weeks ago when her abdomen started the severe swelling so it was good that she was still alive.  This means that her liver is still functioning to a degree for whatever reason.  He then proceeded to warn us about all the bad things to be aware of like sudden coughing up of lots of blood, severe rectal bleeding, etc. - very scary stuff.  He wanted Ginny to get a CT scan ASAP.
We got the scan this afternoon and her portal vein is still open - that's the great news.  But, the left side of the bile ducts in her liver are very clogged and the right part of her liver is sclerotic (scar tissue probably from tumor die off).  So, her liver is still under severe stress.  Ginny has no energy, no appetite so that's what we'll be trying to improve this weekend.
Many of you were already aware of these developments as I've asked for help from you.  We so much appreciate the wonderful family and friends we have.  Enjoy your families as much as you can.  Thank all of you for your continued prayers, good thoughts and love.

STILL NOT RECOVERING WELL

This is Dean blogging.  Sorry I have not kept up the blog.  Not enough time in the day and I'm choosing sleep over blogging.  Last blog was on Jan 28 and Ginny's health has not improved much.  She is still very weak, not able to eat nor hydrate well, having pain in upper abdomen, very bloated abdomen.  Last week was very stressful - got her labs on Jan 24 and her liver enzyme numbers went up with her bilirubin the highest ever - she was severely jaundiced.  I got her appt with gastroenterologist on Jan 26 who said that she was not going into liver failure (big relief) but he couldn't do much for her.  Brought her back to the liver embolization doc's office that afternoon and a new doc decided to ultrasound her abdomen which showed a lot of fluid accumulation.  This doc drained 1750ml (almost 2 liters) of fluid from her abdomen which gave her a lot of relief from the bloating feeling.  She felt and did better over the weekend.  On Sunday, she ate a big meal of Chinese roast duck, roast pork and chicken feet and said it was the best meal she's had in a while.  Unfortunately, all this greasy Chinese food was not good for her (too much for her liver to handle) and her abdomen was very bloated again on Monday morning.  This Monday, the oncology nurse called to tell me that her liver numbers had gone down a little which is good.  I've been doing lymphatic drainage on her which has helped the bloating effects so she can eat some and get some relief from the fluid pressure pain.  Her abdomen will be drained again tomorrow, Thur.  We need to get her liver healing faster so she can go back to systemic chemotherapy because there is concern (from the oncologist) that her blood tumor marker number is going up which means there's cancer growing somewhere.  She did manage to go to dinner with us Wed night - first time in a couple of months.  That's the latest.  We're taking one day at a time and every morning we are thankful that Ginny is still here.  Thank those of you who have helped us recently.  We appreciate everyone's prayers and positive thoughts.

Latest Update

Sorry that it has been a while since the last update.  Have been very weak and experiencing awful side effects.  Taking a very long time to recover from all of the chemo treatments.  Good news is that the liver chemo embolizations worked and there are no more live tumor cells in my liver.  However, the liver sustained some damage from the treatments & is slow to heal.  Two liver function numbers are sky high above normal ranges, which concerns the doctors.  I am jaundice & the bile ducts are not healed yet.  I have been too weak to take any more chemo treatments so doctors gave me a break in December and January.  Unfortunately, my tumor marker has gone up from 141 to 437.  We are monitoring my health every week now to see when I can start the systemic chemo treatments again.  I am grateful for each day that I wake up.  I hope that one day soon I will actually get to do something fun other than sleep & visit the doctor's office.  Hope that 2012 is a peaceful and healthy one for you and your families.  Thank you for your continued support and help.  We are appreciative and grateful for the support system that surrounds us.  Please take care.

Having another good moment . . .

so I am content.  Have stopped antibiotics regimen.  Never was fighting any infection.  Doctors now think that I have "tumor fever".  Still have the high temperature, but learning how to "manage them" before they get too high.  I am miserable & in pain until the fever breaks, but doctors tell me it is "good pain" because it means that the chemo drugs are still destroying the cancer cells.  Doctors are pleased that I am having a "robust response" to the treatments.  Apparently, my body is "taking the scenic route" & is still working even though the doctors thought the chemo cycle was completed several weeks ago.  (smile)  Still experience severe fatigue, but not as frequent now.  I was unprepared for that side effect, although the liver doctor warned me about it.  I just thought "come on - how much more tired can I possibly get?!"  Obviously, I was wrong.  Here is an example of my "athletic ability" right now.  I am so tired after peeling a grapefruit that I have to take a 4 hour nap before I can eat it.  Then I nap again after eating it.   I see the medical oncologist this Friday to see when we start the systemic chemo treatment again.  Hope that you & your families have a peaceful and healthy 2012!  Please take care. 

An Update

I am very weak now so I will make this short since many of you are concerned that you haven't seen an updates.  Since the last blog, I have been throwing up & became very dehydrated.  After fixing that, I started to and continue to have unexplained high fevers.  They have taken numerous tubes of blood for culture tests, tested for airborne infections, and took my blood and separated the red from the white blood cells and attached a "tracer" on the white blood cells to see what they were attacking.  My immune system is on overdrive & is attacking my body.  All tests came back negative for any infection, but I continue to have the high fevers.  I am now on 2 very strong antibiotics & anti-inflammatory drugs.  I was almost admitted to the hospital twice this month - one for the high fever and last Friday for having half the amount of red blood cells of a normal person.  I received another blood infusion yesterday, but am still weak and tired.  Good news is that the tumor marker dropped from 179 to 141, the liver chemo killed most of the large cancer cells, and my hair is growing back!  My chemo treatment for this month is on hold due to the fact that my condition is unstable.  Doctor checks me every week.  Basically, both doctors and nurses say that I look horrible.  Will keep you posted.  Tired now.  Good night.

Feeling better . .

this week.  Thank you for all of the cards and words of encouragement.  I went into a "dark place" for a while & you all yanked me out of it!  Thank you so much for "hearing" me.   Went to a follow-up medical appointment with the liver specialist.  Told him I was not recovering well & that I had no quality of life.   Things have to change.  He agreed.  The two doctors said that they did not implement an "aggressive treatment" plan.  They know that they were "brutal" to me.  For the past 2 months, I was inunated with chemo drugs every week with no time to recover from each treatment.  If the chemo drugs were "smart" & just destroyed the cancer cells, I would have had some quality of life.  Unfortunately, it destroys both healthy and cancerous cells.  Doctors will give me some time to recover now.  Or as they said "to feel human and alive again instead of a science experiment."  Will run tests either end of December or in January to maximize the effectiveness of each chemo treatment with time.   Will keep you posted.  Enjoy the joys of the holiday season and don't get in the way of those crazy shoppers.  (smile)  I am blessed to have you all as my support system.   Thank you for your continued warmth and friendships.  Take care.  Hugs and love.