Dad Update

Dad had a routine 3-month MRI last Monday and it still looks cancer free. There are some side effects due to the surgery/chemo/radiation that show up on the scan but otherwise, no cancer. The oncologist reiterated to me again that my dad is beating a huge statistic. They predicted he would only live 1 year (true for over 90% of people in his situation) and it has been 2 years and 1 month.

I should be feeling incredibly grateful but this has been a hard week since my mom’s 5 year death anniversary was on Wednesday. No one said anything. My dad and brother didn’t mention anything (although I’m sure my brother remembered). My friends have forgotten and Terry doesn’t keep track of dates (dates are not his forte even though he tries to support me in any way possible). Dealing with a death becomes very much a process on your own. When my mom first passed away, tons of people flocked to my side. But something a friend told me has stuck with me throughout the years–it gets harder after a couple months, even years, when no one remembers what you’ve gone through. That is so true. I’m not going to hold people accountable to remembering when my mom passed away because everyone has their own crap to deal with. But I’ll just say that every holiday and milestone is difficult.

Ever since my last post about brain cancer and a comment I received: “It is unlike any other disease. To me, it is comparable to having dementia and cancer at the same time.” This has been more true lately as my dad has done a complete 180 from his I-don’t-need-you attitude. He has called me multiple times for help, he has given/cooked me food, and he looks extremely excited to see us. I wonder if he has just simply forgotten all that has happened in the past year. When I asked him why he’s asking us for help, he denied ever saying those hurtful things to us in the past and that we must have misunderstood. I am now realizing that it is easier for me to attribute his behavior to dementia than to psychoanalyze the meaning behind every action.  It’s so weird to grow up with a parent who is a certain way only to have an almost completely different parent later on.  But I guess they say the same thing about spouses?

Dad Update

Brain Cancer Turned My Dad Into An A**Hole

Once upon a time, there was a 24 year old girl.  Her dad got diagnosed with cancer.  Her boyfriend proposed.  Six months of life left was her dad’s prognosis.  Instead of waiting to get married, they planned their wedding in 5 days.  Dad walked his little girl down the aisle.  He died two weeks later.  She got a tattoo of one of her and her dad’s favorite quotes in his handwriting to remember him by.

True story.

I heard it from a girl in yoga.

Thank goodness I wasn’t sitting near here because I wanted to both cry and yell at the same time.  Something along the lines of “You are so lucky to have that kind of relationship with your dad!!” to “Aren’t you lucky you don’t have an Asian dad?!”

You will recall my last post consisted of our pros and cons list on moving out.  But as of 4/4/14 (ominous, no?  In Chinese, 4 = death), we have officially decided to move out.  No turning back like we did before.  I won’t go into too many details but it started and ended with a conversation between Terry and my dad.  I chose not to be involved because I knew I wouldn’t be able to control my words.  Apparently my dad has a similar problem.

My dad has always been a stubborn man in the sense that he thinks he’s always right and will not believe a thing you say unless you say it at least 3-4 times with usually some proof or another person to back you up.  It could be a debate on the color of ketchup or how the universe works.  The conversation between Terry and my dad started out about certain bills but progressed into overall home repairs to why we are living there.  Every time we explain to my dad that we moved in to help take care of him, two of his favorite responses are “You didn’t even ask for my opinion before you moved into my house.  You just did it” and “You guys didn’t help me do anything.”  It’s one thing when someone says words clearly out of anger but he so nonchalantly INSISTS that he could have done everything on his own.  Driving to all the pre-op/post-op appointments, communicating with doctors post-surgery when he couldn’t say anything coherent, cooking for himself (he microwaved tiramisu), filling out his retirement documents, etc. etc… he says he could have either done them by himself or asked his friends.  It’s ironic because the day after this conversation, he expected me to drive him to two appointments.

Okay, so technically we didn’t ask him if we could move in.  We did it because 1) my dad had stage 4 brain cancer and 2) they estimated he would have at most a year to live.  Now that it has been two years cancer free, my dad has passed the mark that 97% of people with his cancer couldn’t.  But I can’t tell you how hurtful it is to readjust our life, our newlywed life, for almost two years taking care of him and for him to act like we did it out of our own self interests.  I don’t know what it is about this whole cancer experience that has changed him into this negative, awful person who says the most subtly malicious things.  Things that hurt DEEP, that I will never forget.

Sacrifice does not always result in recognition.  I know that.  Maybe when I become a parent, I will know that even more.  My dad has gone through a lot in his life and has done a lot for us.  But I feel that it’s unfair for him to continue to use his life experiences as a reason to treat us the way he does.  I will never be able to go through a cultural revolution in China, to immigrate to a country with little money and little understanding of the language, to work graveyard hours for 20+ years, to be the primary caregiver for an ill wife, and whatever else he likes to mention during our arguments… but I am doing my best here.  So we decided to move out asap, as soon as we can find a place that will accommodate Terry’s car child and my two dog children, in hopes that having space will make our relationship with my dad better.  It certainly can’t get any worse.

I’ve been really torn about sharing our family junk.  I know that on one hand, I need to honor my family and protect their image (whatever that means) but if my experience with this can be a second of comfort for another, then good.  My work is done here.

Brain Cancer Turned My Dad Into An A**Hole

Living with Dad

Who would have thought that at 30 years old and married, I would still be living with my dad?  Not me!  I’ve written about how my dad was diagnosed with brain cancer in 2012 so that’s when Terry and I decided to break our apartment lease and move in to help take care of him.  Well, it will be 2 years this coming June and we’re stuck at a crossroad.  Move out or not?

Pros to Moving out:

  • Privacy for Terry and I
  • Less fighting over everything (house things, money, etc.)
  • Possibly a better relationship with dad due to less fighting
  • Dad will be less annoyed at Marlow since he pretty much hates him

Pros to Staying:

  • Saving money (We still contribute quite a bit but it will be less than the ridiculous cost of living on our own in the Bay Area)
  • Being able to buy a house in maybe a year and pay off our car faster
  • Marlow and Titan can entertain each other during the day and there’s more space for the both of them to run around
  • We can help my dad with anything (this is both a pro and a con actually because sometimes he depends on us too much on things he could do but is too lazy to do)

I don’t think I’ve ever encountered a decision where I was almost evenly split.  I’ve always been able to clearly see what I should do but we really are torn at this point.  If you are wondering about my dad’s health, he has been getting MRIs and blood tests every 3 months.  He looks clear of any cancer regrowth which is still apparently inevitable.  Actually it’s a bit confusing.  Doctors said that over 90% of people with that specific cancer live an average of 18 months even with the most aggressive chemo/radiation treatment.  My dad has made it to 22 months which is very promising.  His oncologist said that once he makes it to the 5 year mark is when we can start seeing the doctor less.  So that time period between 18 months and 5 years is really a toss up.

Sometimes I feel that it’s very naive when I hear someone say “I would never let my parent live in a nursing home” or “I would definitely take care of my parent if they got sick” without experiencing it firsthand or at least getting a firsthand account.  It’s a complex situation.  Your parent’s personality could completely change when stricken with a disease.  He/she won’t be the same person that you grew up with; YOU will be taking care of someone who is possibly incredibly needy and depressed.  And don’t get me started on depression… it is one of the most difficult things to deal with on a daily basis and you begin to start putting the responsibility for their happiness onto yourself, which only results in guilt.  Guilt can eat at your soul when it becomes the primary motivator for your actions.

I don’t expect to live a happy, carefree life even though people encourage us to move out so that Terry and I can have time for ourselves.  Life is full of suffering and the goal isn’t just to make it all go away.  I also understand the importance of building a strong foundation for our marriage but that can happen in any situation that we’re in.  If we left, I’m hoping that our relationship with my dad would get better since space is something we all need.  If we stayed, I would need to set some clear expectations and boundaries for everyone’s sanity.  And if we stayed, how long would we stay for?

Living with Dad

Dad’s Last Day of Radiaton

Yesterday was  my dad’s last day of 6 weeks of radiation treatment and chemo pills.  As of now, there is no regrowth of the cancer but he will have a 4-week break before starting more chemo.  He’ll then take 5 days of chemo pills for every 4 weeks. For this type of cancer, regrowth is inevitable for 97% of people.

The scary Halloween mask you see is really his radiation mask.  It helps prevent ANY movement when the machine is zapping his head (also because they bolt the mask down to the table).  After every session, his face is left with circle imprints and he always looks at the passenger side mirror when we get into the car.  Then he says talks about how ugly it is.  To make it, they took a plastic sheet with these holes, put it over his face, and put warm towels over it.

Dad in the plastic mask

Because my dad ended treatment yesterday, he thought that he should be just fine to start driving again (he hasn’t driven since May).  I told him NO and unfortunately, I didn’t get a chance to ask the doctor to confirm that.  When he first told me about wanting to drive, I actually scolded him and told him to think about others while putting his own life in danger because we will be the ones taking care of him.  He told me not to talk so negatively.

But while Terry and I were out last night, he decided to take a drive to a nearby Chinese restaurant and get takeout.  I did leave him plenty of delicious, edible food so do not interpret this as an act of desperation on his part.  I was actually pretty mad because even though he has been driving for a long time and probably remembers mostly how to operate a vehicle, he doesn’t know the simple things like how to work his cell phone in case of an emergency.   The other day he was actually looking for his phone book because he forgot that cell phones have his contacts’ numbers in them already.

Today, I decided to see how his driving is first-hand so I let him drive us to my old high school so we could walk/jog around the track (call it Olympic inspiration which I’m sure happens everywhere).  He actually did pretty well except he didn’t see some speed bumps and went freaking fast over them.   I’m still not 100% confident that he’ll be safe driving but maybe getting back into the routine will help him with the healing process both mentally and physically.

Dad’s Last Day of Radiaton

Father’s Day & Taking Care of the Men

For Father’s Day, Terry and I took my dad out to dim sum.  Even though my dad’s speech and memory have improved since before the surgery, he still doesn’t remember the names of many things, including dim sum.  So I just ordered whatever I wanted.

At night, we made him some chicken cacciatore with fusilli lunghi (picture below).  Fusilli lunghi a long pasta that looks like ramen but is definitely more thick and chewy.  I like the different forms that pastas come in.  Terry only likes penne, farfalle, and spaghetti.  One time I used maccheroncelli pasta which is a long, hollow, tubular pasta but no one knew how to eat it or maybe I didn’t cook the right sauce with it but we ended up cutting it to bite-sized pieces.

Recipe taken from The Pioneer Woman:

Below is a picture of us.  My dad has smiled only 10% of his life so he looks kind of goofy when we tell him to do it for pictures.

As for an update, dad started chemo (pill version) today and he has already thrown up a couple times.  I guess it kicks in fast.  But the kicker is that Terry is getting two wisdom teeth pulled out tomorrow which means I will be taking care of two full-grown men who cannot eat.  Maybe I’ll be more slim the next time you see me as well.

Father’s Day & Taking Care of the Men

Big Changes Ahead

I had never thought that in our 9th month of marriage, we would be faced with something so big as this.  I just assumed that everyone’s first year of marriage was easy going.  You forget that even when you’re married, life goes on and things still happen as normal (or abnormally).

Below is a timeline of events this month:

  • May 1-5: Dad suddenly started showing signs of speech and memory loss, in addition to headaches he has been having for months.
  • May 7: Took dad to see his general physician.  Doctor recommended antibiotics for a sinus infection and scheduled a CT Scan.
  • May 8: Dad had a CT Scan and then a MRI.  Doctors found a 6cm mass in his brain.  We were in the emergency room for the majority of the day.
  • May 9-11: A blur of additional appointments and pre-op tests.
  • May 15: Surgery to remove the mass/tumor from 8:30-2pm.  They were able to remove most of it minus the microscopic bits which will need radiation later.
  • May 18: Discharged to go home.  Meds will be steroids to decrease the swelling, alleviate pain, and prevent seizures.
  • May 19: Surgeon called to tell us that the tumor is cancerous and chemo/radiation will be needed.  See below.
IV Glioblastoma multiforme (GBM) Consists of Glioblastoma multiforme (GBM), which is the most common and most malignant primary brain tumor. Primary GBM grow and spread to other parts of the brain quickly; they can become very large before producing symptom, which often begin abruptly with seizures.[4] Less than 10% form more slowly following degeneration of low-grade astrocytoma or anaplastic astrocytoma. These are called secondary GBM and are more common in younger patients (mean age 45 versus 62 years).[3] “Surgical removal remains the mainstay of treatment, provided that unacceptable neurologic injury can be avoided. The extremely infiltrative nature of this tumor makes complete surgical removal impossible. Although radiotherapy rarely cures glioblastoma, studies show that it doubles the median survival of patients, compared to supportive care alone.”[4] The prognosis is worst for these grade 4 gliomas. Few patients survive beyond 3 years. Individuals with grade 4 astrocytoma have a median survival time of 17[2] weeks without treatment, 30[2] weeks with radiation, and 37[2] weeks with surgical removal of most of the tumor followed by radiation therapy. Long term survival (at least five years) falls well under 3%.[5][6]
Terry and I have broken our lease and our official move out date is 6/21.  We have already begun moving our things back to my dad’s place and rearranging the area so we can fit everything in.  This has been the most time consuming but along with that, I’ve become really the “man of the house,” for lack of a better phrase.  One thing I have discovered is that I do not like doing other peoples’ paperwork.  Don’t get me wrong, Terry is totally a man but because he has a full-time job, I want his main focus to be bringing home the bacon while I sizzle it.
Take a look at this incision.
Big Changes Ahead