ER – Round 2

The days following the first ER visit were not any better than before.  Her pain and nausea were a constant thorn on her side.  She wasn’t really able to eat much or drink either causing her weakness to intensify.  With all the IV fluids that she received during the brief hospital stay, her ascites got much worse.  I had scheduled a paracentesis for the following Thursday (because that was the earliest they could schedule her in), but seeing her swollen belly, I didn’t think she would be able to wait even the weekend.  So after conferring with Gene and Brian, the safest thing to do was to get her in through the ER so they could watch her, stabilize her, and admit her so she could get treated.  Hence, another trip to the ER in 2 weeks.

Brian once again made sure Carmen was expedited through the process because her condition demanded fast action.  We also needed to address her nutritional state.  Since she wasn’t able to eat, it only made sense to hook her up to a TPN bag to provide temporary sustenance through an IV.  TPN is basically a backup system in case a patient isn’t able to eat for a long period of time.  Carmen was obviously a candidate for this.  So they inserted a PICC line again.  This time it would be to provide much needed nutrition, not chemo.  They also tapped her belly to pull out fluids that were trapped due to a combination of low protein levels and cancerous implants, both of which cause ascites.  They pulled out a little over 2 liters of fluid.  Outfitted with a picc line so we can administer TPN at home gave us a somewhat renewed sense of hope.  It was just a matter of time I was hoping that she would snap out of this spell of nausea and pain and begin to eat again.

That was not to be.

We administered TPN at home for about 1 ½ weeks.  Her only other intake by mouth was vitamin water and regular water.  Not much food was going in.  She was also having a hard time going to the bathroom due to, what we thought, was severe constipation.  At the same time, since she wasn’t able to drink much, she wasn’t able to take any decent amount of laxatives.  Her condition was deteriorating with each passing day.  Needless to say it was very difficult to watch her decline like this.  I so desperately wanted my old Carmen back.



The Enigmatic Persona

Last week was very rough for her.  It was supposed to be a good week since it was her off week from Xeloda.  I was hoping and anticipating her return to “better” health during this week, but the pain and nausea persisted and would not relent.  By this time she was not able to take Protocel due to vomiting.  Her intake of food is minimal, weakening her even more.  It is the vicious pain cycle that somehow needs to be broken.  With pain, she needs to take pain killers (Percocet, Methadone, Fentanyl patch, Motrin, and some other things that may not be legal in certain states, but perfectly legal in the Chang household) in high doses.  The side effects of this are nausea and constipation, further exacerbating her decreased appetite.  With decreased intake of good food, her body takes much longer to heal itself leaving the pain unchallenged, thereby requiring the constant flow of pain medication which causes the cycle of side effects to perpetuate endlessly.  The goal is to wean her off of these pain medications so her body can normalize itself once again and accelerate the healing process.

As I alluded to last time, we’ve decided to stop Protocel altogether.  As a believer, I have to believe that Protocel has served its purpose in this fight.  The reason?  In Matthew 7:9-11 the Bible says “Which of you, if your son asks for bread, will give him a stone? 10 Or if he asks for a fish, will give him a snake? 11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!”  We’ve been sincerely asking for guidance and wisdom and felt compelled to try Protocel.  So it did serve a purpose.  Just don’t know what that is at the moment.  All things in due time.  So we’ve moved on to other holistic treatments which I’ll explain at a later post.

The Great Adventure (aka being married to Carmen) continues

Getting back to last week, she was due to get her blood work for the upcoming cycle of Xeloda.  She had been very weak and constantly nauseous and in pain.  So on Wednesday I came home early to take her to Lab Corp to get her blood drawn.  We needed to see if her blood counts were ok or if they were low.  She was so lethargic and pale that I assumed they would be low.  So after discussions with Gene and her oncologist, we decided to be on the safe side and take her in to the ER.  That way she can get all her blood work done and get treated right away (i.e. transfusion) if she needed it.  So I called Brian Gee and told him that I would be bringing her to Little Company in a few hours (Wednesday, 10/31).  Brian was good enough to come meet us there to make sure we were taken care of.

The result of the blood work once again astonished me.  It was all normal.  How, in her weakened state with minimal nutrition and continual vomiting, could her kidney/liver function be ok, and all blood counts be normal?  She certainly is an enigma and very resilient, which is what we desperately need her to be.

This hospital stay was very hollow for me.  Usually when one goes to the hospital there is an expectation that they will get better when they leave.  In our case, there is no such thing.  A hospital stay is just stabilization and nothing more.  The cause of it all is still there and does not change and there’s nothing they can give to make it go away.  An infection can be treated at the hospital with strong antibiotics, so when you leave the hospital it’s all fixed.  Not this.  This fix is very far away and the journey is very difficult and painful.

Needless to say it takes a lot of effort to care for Carmen.  When I leave for work someone needs to come and help Carmen and take care of Audrey.  So for the past 2 months we’ve had a few people go completely out of their way to helping us out.  Monday’s are reserved for Kate Bae, Carmen’s unni.  She comes at 8am and stays to 2 or 5.  Tuesday is my sister Jaycei, usually all day.  Wednesday morning is Grace and/or Anna from church, and the afternoon is usually Sara.  Thursday is my Junior High School friend Justine (she’s a cop!) whose flexible schedule allows her to spend the entire day.  She spent Wednesday night at our place when Carmen and I were at the hospital overnight.  Sarah from church and Anita have helped fill in gaps during the week as have others.  Her childhood friend Miriam has taken sporadic days off of work to come and take a “shift”.  So the week is usually fully covered with friends and my family.  Jenny H for bringing goodies from Target, and Jenny Y for constantly praying and bringing her things to eat and try.  Han for organizing the help that so many have chipped in for, and Gene for being the ever present adviser.  Her youngest sister Ana for coming over on the weekends to entertain the girls so I can pester Audrey and nag Carmen all weekend long.

My parents have been coming over about 3-4 times a week after work driving from Cerritos with dinner so I can eat somewhat in peace as they watch Audrey, who’s become as bossy and demanding as her mom.  My mom often times comes over from Cerritos, picks up Carmen and takes her to foot therapy in Buena Park, then drops her off, then goes home, which makes for very long days for her.  This sacrifice has made them much closer.  Since they own a flower shop they usually bring her flowers.  The last time they went to foot therapy, they had a pretty cool moment when the doctor looked at Carmen and said the worst may be behind her.  Both cried together.  That time now seems like an eternity away seeing Carmen’s frailty right now.

In Due Time…

A quick note on these 3 words.  I had written the above post on 11/5/13.  I couldn’t understand the Protocel issue, but I left it with God and wrote “All things in due time.”  The very next day, 11/6, I look at the daily verse in my Bible app and the verse is from 1 Peter 5:6 which reads

“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time.”


Small Victories

As usual against my wishes we went on an outing to a pumpkin patch.  I have nothing against pumpkin patches, but I do have a problem if they are 50 minutes away when the one in Torrance (decent with a petting zoo) is much closer.  We went to the one in Irvine, Tanaka Farms.  It was nice, but isn’t a pumpkin the same in Irvine as Torrance?  I’ll go out on a limb and venture to say that it’s the same even in Texas or Nevada, or anywhere else they sell pumpkins.  The farm animals at the petting zoos are probably the same as well, smelly, stinky, aggressive, and overall unpleasant.  Why we had to go to Irvine, I don’t know.  But we did.  Actually the longest part of this adventure was just getting out of the house.  It took us over an hour just to get all 4 bodies in the car to leave (must be a female thing), 50  minutes to get there, 45 minutes actually enjoying the place (because we got there so late), then 50 minutes back.  Carmen actually did quite well.   She had enough energy for that brief outing.  The problem comes the following day.  In her weak state it takes literally a few DAYS to recover.

The girls certainly enjoyed the day, which in Carmen’s eyes makes the pain and exhaustion worthwhile.

At this time Carmen is on her first cycle of Xeloda since her 5 month break from chemo.  That definitely added to the fatigue and nausea.  We’re not sure how the Xeloda is affecting the cancer right now.  Due to her weakened state it seems it’s not really doing much to halt the progression.  However, it’s still early to make any kind of determination either way.  So for now, it’s a waiting game.  I’m having my doubts with Protocel as well.  At 4 ½ months (if it was working) we should be seeing some good results.  The fact that we’re not makes me wonder if it’s not working.  Can we afford to stay on this for another few months?  Debating, but seems unlikely.