1

(12 replies, posted in In Remembrance)

The words do not seem real.  It's been almost a week now and saying it out loud has been unbearable.  Now I realize that writing it is not any easier.  Doing either makes me cry, and right now it's hard to imagine the day that it won't.

At 1:21 AM on December 26, 2007 a concurrence of events changed things forever.  My mother Amy whispered into his ear as she let go of her husband of 35 years.  Charlie and I held our father's hand for the longest and final time of our lives.  Linda said good-bye all too soon after saying hello to her new ba-ba.  Friends unknowingly lost the most loyal person to enter their lives.  And the world we all live in became a little less special of a place as Bill Fei took his final breath.

Dad was a unique person.  In many ways he was unlike any person I've ever known.  Truth be told, many of his actions were both puzzling and often times frustrating to me (and I'm sure to my mother and brother as well).  Why did he insist on doing things a certain way even if it did not benefit him or his family?  Why did he push and prod to the point of conflict until things were done his way?  Why did he make up his mind on something and then not budge?  Why couldn't he be more flexible and reasonable and be a bigger person in the process?

Unfortunately, it took nearly 33 years and a terminal illness for me to realize that it was precisely that inflexible nature that made my dad not only the bigger person, but a man of the highest quality of character.  He did things a certain way NOT because it was HIS way, but rather because he genuinely believed it to be the RIGHT way.  All too often we (and by "we" I mostly mean "I") are guided by a Machiavellian motivation to act in a manner that is most advantageous to our own cause.  Dad, however, did not succumb to moral flexibility.  To him, if it was right, it was right, and if it was wrong, it was wrong.  He lived his life with a clear conscience and was at peace with his actions.  No wonder he slept so well all the time.

Dad certainly had an uncanny sense of timing.  It was on Friday the 13th of January 2006 that he was admitted to the hospital for the first time and the dreaded word "cholangiocarcinoma" entered our vocabulary.  Then, it was late in the evening on Christmas day 2007 that Dad told Mom that he wanted to go to sleep and did not want her to wake him up.  Along the way, he defied the "6 to 8 months" prediction and fought to maintain his strength up until the day of my wedding, 21 months after his diagnosis.  There was a significant deterioration in his condition right after the wedding day, but Dad still made sure to be with us for another birthday for each of his sons, one more Thanksgiving, and of course a final Christmas.  He also met Charlie's girlfriend Julie for the first time just 4 days before passing and left us the exact week of the annual memorial service at the Hsi Lai Temple.  Personally, I also think that Dad held out until the 26th so that Christmas would not become a day of annual mourning going forward for his family and that he left us before the end of the year so that we could start 2008 as a truly new year.  I guess this could all be coincidence, but once again when Dad believed something was the right thing to do, he definitely did it.

Mom, Charlie, and I decided early on that we wanted to protect Dad and not let him think about the fact that he had an incurable cancer with a life expectancy of less than a year.  As such, we spent the last 23 and a half months shielding him from the sadness and depression of his condition and his impending death.  We passed along a filtered, rosy picture of what doctors told us.  We never allowed ourselves to shed a single tear in his presence.  Even on Christmas day when he suffered a heart attack and vomitted blood, we told Dad that things were ok.  We would carry the burden and sadness for him.  We were being brave so that he would not be depressed and give up.  We were the strong ones...

...Or so we thought.  In hindsight, Dad knew all along - he had to.  He was in the doctor's office when they talked about his cancer.  He was there when they said his liver was failing.  He could obviously see the deterioriation of his own physical appearance.  We thought we were being brave for him when all along he was the one who was being brave for us.  He refused to acknowledge his diagnosis and prognosis because he knew that our happiness or sadness were based on his outward emotion.  He knew that if he became depressed we would be distraught.  If he was sad we would be inconsolable.  He willed himself to be strong up until September so that we could celebrate at my wedding.  As usual, Dad did what he believed to be the right thing to do.  In this case, it was deceving himself and his family so that we could enjoy and cherish our remaining time together instead of merely waiting around until his passing.   

I miss my father very much.  Little things make me think about him all the time.  I am so thankful to him for who I am and the life I have.  Whether I was 3, am 33, or will be 83, Dad will always be my dad.  I love him so much.  I wish I hugged him more when he was alive.  He was a special person, and I didn't fully understand that until recently.  I wanted to share this so people would know the person Dad was.

My mom is simply the best.  I feel so bad for her that it literally hurts.

Richard

I'm presuming there is no right or wrong answer but I was hoping that people could share their stories on when they chose hospice care rather than going to doctors/hospitals anymore.

It's such a hard choice.  From the get-go, my dad decided that he didn't want to know all the specifics and that he wanted us to make the medical decisions for him.  He had the upmost faith in our care for him and literally put his life in our hands.

The doctors are telling us that he is in very bad shape but can't tell us how long.  In fact, nobody is willing to give any estimate except one doctor said "no, weeks... not months" so that's all we really have to go on.  Based on that, we are thinking hospice, but the hard part is that dad still looks pretty good considering all he is dealing with.  He says his pain level is at 2-3 most of the time.  He is still able to eat/drink.  He enjoys the company of people.  He is talking about wanting to do exercises and eat more when he gets out of the hospital so that he can get stronger.

He simply doesn't seem like someone who is going to pass soon although the labs and symptoms (ascites, black stool, jaundice) would indicate otherwise.

How do you make the decision that you no longer want to extend your own father's life and that you are seemingly expediting his death, albeit in a comfortable manner?

Thanks,
Richard

3

(14 replies, posted in General Discussion)

Kris,

You are truly a gift from God.  Your humor and your spirit are a blessing to all those around you (in person and via the internet).  There's that saying that it's harder on the family than on the patient (I'm guessing it wasn't a patient who said that one), but if that is true, I know that your attitude is the greatest gift you could ever give to Hans.  And reading your postings makes us all feel a little better.

I'm sorry to read that your ultrasound found you on the wrong side of the "rock and a hard place".  You are the same age as me, so if you're looking for some laughs this weekend, I recommend a blast from the past - Fast Times at Ridgmont High.  I get a kick seeing Sean Penn, Anthony Edwards, and Eric Stoltz as stoner buds.  And it's funny to see 3 future best actor winners in the same teen movie.

Anyway, keep on crying in the shower if you feel the need.  If nothing else, it saves on kleenex.

Wishing you the best,
Richard

Intellectually and now emotionally, I believe that the time of my dad's passing is imminent.  No matter how much our family tries to prepare ourselves for it emotionally, I know that it is still going to feel almost unbearable when it does.  Since I don't know that I will be able to think rationally or pragmatically when that time comes, I was hoping to get some advice on things to do with respect to legal, financial, administrative.  Does anyone have a checklist on things to do before a family member passes and also things to do after (e.g. with respect to insurance, social security, reporting to other agencies, etc.)

Thank you.

Richard

...My dad is likely going to leave us before the end of the year.  It feels weird to actually type those words and to read them is even stranger.  Our world will never be the same again.  Just thinking about it makes me feel like the world is incomplete. 

I finally did something on Thursday that our family has been putting off for a long time.  Went down to the cemetery and purchased two burial plots.  My mom and I know that we should have done this a long time ago, but whether it be denial or fear of "jinxing" my dad, we kept saying we had to do it, but just never could get ourselves to pull the trigger.  However, the conversations with doctors this week has knocked out 99.9% of all hope that I had.  And maybe that's not a bad thing.  With all I've learned through cc.org and other websites, I've seen the telltale signs for awhile (ironically, started just right after my wedding in Sept), but to hear a doctor actually say "no, not months, weeks at best" was still a shock.

So my prayers have changed.  I pray...

...that my dad will not have unbearable pain and suffering...that my dad can pass without significant regrets...that my dad can leave this world peacefully in his sleep...that my mom has even more strength than the unbelievable strength she has had these last 23 months...that my mom does not just collapse after my dad passes (she did not even have time to mourn her own mother's loss because it happened the month after my dad's diagnosis)

...and most importantly, I pray that God accepts my dad for being a genuinely decent and good man, husband, father, brother, and friend.  And for being a person of true honesty and integrity who did not sacrifice his morals and firm belief of right and wrong for his own benefit/gain.  And understands and can accept that my dad was born into and lived in an environment that simply did not have a sense of belief or relationship with God.

Richard

Patrice,

Thanks for your honesty.  We all believe in something, whatever we want to call it or even if we call it anything.  CC is truly a non-discriminatory disease.  It judges not on religion, race, gender, nor apparently even age.  The least that we can do is the same.

Patrice and Dave - you are most definitely in my thoughts and prayers.

Richard

7

(11 replies, posted in Good News / What's Working)

Lisa

Fantastic news.  Thanks for the update, gives us all hope.  Did you do any specific type of radiation?  We're looking for something to help my dad.  Thanks.

Richard

8

(8 replies, posted in Suggestions)

Mark must have been an amazing person to inspire you and Stacie to take the initiative.

Happy Birthday Mark!

Fran,

Jacqueline's words are just about the sweetest I have ever read.  This is a testament to the wonderful family that formed from the loving bond between you and your husband.  God bless.

Richard

10

(8 replies, posted in General Discussion)

Kris,

Good luck with everything.  I did a double take when I read "pray I have gall stones".  I guess that's literally being between a rock ("stone" to be precise) and a hard place.

Richard

11

(6 replies, posted in Adverse Reactions & Side Effects)

Jo,

I don't knowof anything specific for cc.  However, for my dad, we give him glucerna (like ensure but with much less sugar), a protein bar, and last week at the hospital, we just found out about carnation instant breakfast juice drink.  It works when the need for clear liquid diet arises, and it's easier to go down than the ensure.  I hope this helps a little bit.

If I may ask, what new trial is your sister waiting to be on?

Richard

Kath,

Thanks so much for your post.  My mom and I are the primary caretakers for my dad and we are all having a difficult time right now.  We kind of take the denial approach as well, shielding dad from the clinical information and stats that doctors give us.  I have struggled with this decision as to whether we are doing the right thing, but dad seems to do better when he is in denial and mom says it's for the best.  Reading your post makes me think that what we are doing is for the best and we're not the only ones doing it.  Your dad definitely sounds like a "tough old bird" as you put it.  I hope you and your family have a great 83 with him next week!

Richard

Fran,

Colin sounds amazing with his fighting spirit.  Both of you are in my thoughts and prayers.

Richard

14

(7 replies, posted in Chemotherapy)

Jeff,

When I get down and start feeling sorry for me and my family, reading your postings gives me quick kick in the a$$.   Thank you for showing everyone the power of attitude, humor, and courage.  God bless you and your wife.

Richard

hi ersin.  do you know if it is being done in taiwan as well? if so, do you know what hospitals in taiwan and/or china do the technique.  thanks for any info you have.

16

(18 replies, posted in Chemotherapy)

Marions - Thanks again.  I have seen the McCrea blog before.  I actually go read it sometimes when I'm really down.  If I recall, they were looking into a doctor in San Diego that does the treatment.  We're in LA, which is not too far, but were hoping to find someone local.

Bill - Thanks for the head's up.  I'll do a search for Nicole and spheres.

- Richard

Thanks Marions.  I can't help but think that your good wishes helped do the trick.  We got some better news right after I submitted my last posting.
Richard

18

(14 replies, posted in Introductions!)

Thanks so much to everyone who prayed for my dad Bill.  The day actually got off to a really good start as the parascentesis was deemed unnecessary because his ascites had gone away through the low potency water pills.  This was great news since it meant dad didn't have to endure the pain of having a large needle placed in his abdomen to drain fluids.  Next was the blood transfusion which went very smoothly also and the nurses were so super nice.  Finally, came the biggie in the day which was the ERCP.  We've been fortunate to have one of the most expert practitioners perform the procedure.  This was supposed to be on an outpatient basis, but for some reason, dad's bili level skyrocketed after and he was admitted overnight.  He has not eaten/drank for about 36 hours and is being monitored with no estimate of discharge.  Now they are talking about maybe having to do another ERCP immediately if his liver functions don't show improvement.  Again, the roller coaster of this disease.  It seems like it's always a couple small steps forward followed by a huge jump back.  It's difficult for me and obviously infinitely more difficult for my dad, but right now it really breaks my heart to watch my mom.  I worry that the emotional and physical toll of the last 22 months is really starting to reach a head.  and now we're looking at the prospects of another procedure which likely means several days of recovery in the hospital, with mom in a folding cot by dad's side.

..."roller coaster" doesn't even do this disease justice.  The doctor just came in and said that the ERCP specialist believes the bili spike is likely not something to worry about and is probably a result of normal debris/inflammation/clotting post-ERCP.  In other words, if dad can tolerate liquids for the next few hours and doesn't experience fever, significant pain or vomiting then he will be discharged this afternoon.

God works in mysterious ways.  Just as I was about to hit "submit" to ask for another prayer the news got better.

From the bottom of my heart, thank you Jeff and Carol and Kris and Mary Anne and Fran and Marions and Eric and MissingU

Richard

19

(18 replies, posted in Chemotherapy)

Jeff/Bill,

Thanks for the info.  I hope that my dad's liver functions get better enough to at least have a chance to explore these options.

BTW, do either of you know of radiation oncologists in southern California that practice in SIR spheres or 3D conformal radiation.  I was very surprised to hear that UCLA does not practice SIR spheres.

Richard

Carol,

That is such great news!  It makes me feel better to hear, especially since my dad is going through a tough time right now, and i'm actually typing this at the hospital, sitting next to his bed.  Thanks for the prayers.

Tell Charlie I'll be rooting on our Cowboys tonight even though I won't be able to watch the game.

Richard

Fran,

I'm so sorry to hear about Colin's fever.  My prayers are with you, Colin and your daughter.  I thank you for saying a prayer for my dad also.

Richard

22

(18 replies, posted in Chemotherapy)

My dad (intrahepatic cc) just told us that he did not want to do any more chemo.  Whether it's coincidence or not, the last session was very difficult on him.  That being said, he seemed to tolerate traditional radiation pretty well.

I was hoping to get some experiences from those who have tried the SIR spheres therapy and to find out what the likely/possible side effects are.

Thanks.

My dad (intrahepatic cc Jan06) had a weird experience last night.

He's had a very tough last 3 weeks, basically started the day after his first session of gemzar.  Before he started chemo again, his bili was coming lower, cbc's were improving, proteins were up, and edema was pretty non-existent.  Then, the weekend after his chemo, literally all things got worse.  Cbc's nose-dived, bili shot up a point and a half, hiccupping started and he had the worst edema and ascites (along with bowel gas) he's experienced since diagnosis.

Anyway, he started water pills about a week ago to try to help with the edema but they didn't seem to be working.  Finally, in the last couple days, he started urinating some more.  However, he stayed very distended and feet were very swollen, with things moving up to his ankles.  Plus, hiccuping was still a problem.

Then at about midnight last night, he woke my mother up with complaints of extreme pain in his abdomen.  Up until now, he has never said anything was worse than a 4 but last night, he said it was a 9.  Mom wanted to take him to the ER, but temps and blood pressure showed normal so she gave him a fentanyl patch and he went to sleep right away.

This morning, dad woke up with no complaints of pain.  This might be because of the fentanyl, but I thought that it took awhile to really take effect.  What's more interesting though is that the edema in his feet/ankles completely disappeared (they were pretty bad before bed last night), his distension is noticeable smaller than last night, and hiccups are gone.  Both mom and I find the coincidence to be very strange.

Has anyone experienced anything like this?  Is there a medical/clinical explanation?

I like to believe that the brief moment of intense pain was the hand of God entering dad's body to make things better.

My dad Bill is going to have a very full day tomorrow.  Morning blood transfusion followed by a parascentesis and then an afternoon ERCP with possible additional stent placements.

I know that his body may be in the hands of the doctors but his life is in the hands of God.  I would really appreciate it if you could send a prayer or two my dad's way.

Thank you so much!

Richard

Carol,

Tell Charlie I've been a die hard Cowboys fan since I was a little boy also.  Although "little boy" for me meant the Danny White years, not Dandy Don.  From Danny White to Gary Hogeboom (of "Survivor" fame) to Steve Pelleur (with a brief appearance by the immortal Babe Laufenberg) to Troy Aikman to Quincy Carter to Chad Hutchinson/Drew Henson (our "pitcher/QB" experiments) to Vinny Testaverde to Drew Bledsoe (football's version of Wally Pipp) to Tony Romo...

Please wish Charlie a great turkey and pigskin day for me and say to him - "How 'bout them Cowboys!"

Richard