She's Gone

My mother passed away Monday, November 1, 2010 at 6:00 pm.


I had flown in on October 20th because she had been hospitalized from a breathing incident she had the day before. She was released the day I flew in and later the same day, she received a hospital bed and other equipment to her house from Hospice.

Watching her struggle during this time was the most painful experience I have ever had. I have never felt so helpless in my entire life. My gosh, she had such fight in her but there was also another side of her that didn’t want to fight anymore. She was so tired.

The last three days of her life, she had taken such a drastic turn for the worse. I slept with one eye open on her bedroom floor and then, her first which was also her last night at a hospice hospital. She kept wanting to get up and go somewhere but her poor legs could not have taken her anywhere. I had to get up all night long and remind her that she needed to let her weak legs rest and that we’ll talk and watch the news in the morning.

The night before she passed away at the hospice hospital, I received a not-so-lovely email that I won’t go into. I was on the edge of my mother’s life. When I read it, I felt my face grow hot… then deep tingling in my fingers and then they went numb, contorted and froze until I could calm down. The nurse said I had hyperventilated. Never heard of that happening before but I guess stress can do a lot of things. Unfortunately, things had happened so quickly over those past few days that I was only focused on doing what my mother needed. I couldn’t leave her for a minute because she would pull off her oxygen or try to walk somewhere and surely fall. My mother needed things from me that I never thought would happen until much later in life. She had only recently turned 65. It was not supposed to be this way yet.

Earlier in the day that my mother died, her nurse came in to talk to me in her room. She told me that she believes my mother can hear her so she is going to tell me things she would also like my mother to know. The nurse explained some medical things and then told me the following: “Since you are here all day, you need to know that most patients will wait until their loved one(s) have left their room before they pass. It happens more often than not. A family will tell the patient that they are stepping out for a 30 minute lunch… but when they come back, that person will have died. You need to go for walks”.

A little later the same day, a hospice nurse (Marie, who had spent 3 hours with us the day before on a Sunday) dropped by her room. She went up to her, wiped some hair from her forehead and told her “it’s OK to go. Go into the spirit world. God bless you”. When Marie left, I kissed my mother’s hand and told her the same thing… “it’s OK to go”. As my mother was a fairly non-religious person, I told her… “be with Grandma and be with your brother. You will see the face of God and you will love Him as much as He loves you”.

I then went into the Sanctuary to talk to my husband and children on the phone. When I came back into my mother’s room, I felt “stillness”. It could actually be felt. I stood there and watched her… just stillness. I went over and kissed her hand again, told her I loved her and to have peace. No more fighting to breathe, no more struggling to walk, no more pain and no more endless nights. Just stillness and peace.

This blog was supposed to be about my mother’s experience with an alternative to American cancer treatment and those results. It now ends up being a public goodbye. She was concerned about the money she spent in Korea ($100,000 is not cheap) but as they say, “you can’t take it with you” and it did give us those four weeks of time together and that is priceless. My mind, heart and emotion will need to take me back before she became sick and remember so much good that enveloped her. She was a good person in every sense of the word. Kind to everyone and never judged. Cancer did not and does not define her.

Just a few days before I flew to be with her, we spoke on the phone. She told me how obvious it was that I loved her. I promised her that it would never be even a fraction less than obvious.

I wrote this poem years ago for an extraordinary woman, my mother, from a daughter that loves her.

“It’s my first Mother’s Day… as a Mom, that is
And I can’t help but recall when I was a kid.
As I sift back through those memories,
I’m so amazed and can hardly believe…

All that you did and all that you gave
Where do I begin? What do I say?
You are more to me than what you can see.
You are strength, love and sincerity.


There was only one person who could end a nightmare.
One person who knew no monsters were there.
Pennies on train tracks and making a wish,
Horses and sailing and hours of “Go Fish”.


“Rise and shine, Miss America”… do you remember?
Each morning you’d say this… it seems like forever.
Walking home from school, I got lost my first day
There you were around the corner and I saw your face.


You taught me to fly when I didn’t have wings.
I traveled to places I might never have seen.
If you hadn’t given me the courage to venture beyond,
Always knowing you’d catch me if something went wrong.


I wish…


You knew how much you’ve really given
And how much you’ve made me believe in
Pennies on train tracks and making a wish,
As I hold up my daughter and pass down your kiss”.









~~

The Bold and the Beautiful

I just wanted to write a little about Jackie.  She is the one I wrote early on about, who is from Oklahoma and came to Korea with stage IV pancreatic cancer.  She has a rich Southern drawl and is an incredibly devoted Christian woman.  When she meets you, she has a heartful of love for you and a smile that doesn't wane.  She gave me a white blood cell stimulation shot, I put on her pain patch.  She worked on mom's skepticism and everyone's religious persuasion. 

While in Korea, we always wanted to know how she was doing.  She's been through the wringer, emotionally and physically (I don't think ever, spiritually).  After Cyberknife, various chemos, stem cells and gene therapy... her tumor has shrunk from the size of a small mango to the size of a nickel.  I keep up on her (and a couple of other's) updates through CaringBridge every day. 

There is nothing more inspirational than watching someone with a huge and mostly impossible battle before them... and see them do, fight and persevere every step of the way.  What is happening with her, seems to be doing some good.  She'd be quite the miracle if she actually beats her cancer (especially being that it's pancreatic).  I know that Dr. Moon cares a great deal about her and I know that he is doing everything he can pull out of his brain to get her into remission.

Speaking of inspirational... we got to Skype with mom last night.  She looks GREAT.  Really good.  Still struggling with the pain issue, so she's going back to the pain clinic next week... but she just looked like normal mom.  She'll be going in for a chemo treatment at home of Avastin and Cisplatin.  I'm so glad her oncologist is going to continue the plan for her here.  As far as Tykerb, insurance will not pay for it so it seems it will need to be purchased from Canada.  Mom's scan should be in a few months.

Keeping you posted from coast-to-coast.  Signing off (for now)....

Day Twenty-Five

It began to snow this morning (weather report finally right). As much as it's pretty when it does snow, we all dread it for fear it means taking the subway to KCCH. Thankfully, it let up and Mr. Mok drove us over.


This morning at the clinic, mom received stem cells and a protein drip. Poor thing just doesn't have much in the way of good veins anymore. In the past four weeks, she has had approximately 5 days without any needles.

This is a picture of mom with Mr. Won from this morning. I think he said he is 26. Looks young, doesn't he? He handles all blood harvesting as well as makes individual vaccines.

Mom, Dawn, Dave and I were later picked up from the hotel by Mr. Mok at 2:40 pm and swung by Goodgene to pick up Dr. Moon and dropped him off at home on the way in. Sitting in the car with Dr. Moon was very interesting. He did talk about opening up a clinic in the US (near Alexandria in Louisiana) on an Indian Reservation. The problem there is that they would be at the behest of the tribe Chief. If he said "go", they would need to go. The back-up then is in the Bahamas. He has already been approved by the government there. Third back-up is in Cabo San Lucas.

Mom asked him about radiation therapy, as it is used greatly in conjunction with stem cells and chemo. He said that mostly standard radiation is used in the States but in South Korea, it can be modified. If a patient would be in need of a specialized radiation therapy (i.e. Cyberknife, etc), they could come to Korea for that as it would only be for a short time (as opposed to being here for approx. 7 to 12 weeks as most patients need to be). Also, if he is centrally located, he can refer patients to one of the three Mayo clinics. He's hoping this Spring.

At KCCH, both mom and Dawn got their IGRT treatments. This was mom's third. Only twelve more to go!

Tonight is my last night in Korea. I'll miss my mom. We haven't spent this much time together since I was 17. But I'm looking forward to seeing her again this June for my oldest daughter's 10th birthday. Hang in there, mom. Remember all that you've gone through already. Just a few weeks more! It will go by quickly.

I hope you'll hear the echo of my voice and the swish of my pom-pom's cheerleading you on. I love you, mom.
Goodbye South Korea.

Goodbye my Magic Window. I've watched the traffic, red neon crosses and snowflakes... and thought about life and family gazing out of this window.

Will update soon.

Day Six

Happy Sunday!  It was back to Home Plus again.  I think they're going to give me a job pretty soon.  You will notice the cheese slices, Campbells soup and Skippy peanut butter.  American food is expensive!  The soup was about 2,500 won per can and the pb almost 7,000 won.  I only buy items that have either a recognizable label or has some kind of writing in English.  Otherwise, it's a free-for-all of what could be ANYTHING.  By the way, there is no labeling for anything "diet".  If you buy diet coke, it says "light coke" on the label.

This morning I got my WBC stimulator shot from the wife of one of the other patients.  This is her second time here so very familiar with everything including the ole' needle.  Her name is Erica and is such an incredibly nice woman.  I will probably constantly write about the patients and their families.  I suppose that when you, or the one you are with, are going through such an illness... you naturally bond with those in a similar situation.  Everyone sort of looks out for each other.  But then, that's really the way it should be - isn't it?

No clinic visit today, just another amazingly cold day.  So, we're laying low until we go back to Goodgene in the morning.  Mom is in a lot of pain in the rib area.  The coughing only makes it worse.  She's had to cut back on the medication for nerve pain until the shipment for the next round gets here.  Hopefully, it will come tomorrow so she can start taking more again which should help.

I'm eyeing a piece of popcorn from two days ago, against the wall, under the little eating table in our room.  I'm on a mission to see when the maid will vacuum it up.  These are the little things in life that make a quiet day inside worth while.  Until tomorrow...  Anneyong Kayseo!

Hold the Phone!

The decision has been made.  I hope Korea won't be too cold. 



There are no current/open clinical trials going on in the US that is what Dr. Moon is using as treatment.  There are a couple of trials like:  Combination Chemotherapy plus Peripheral Stem Cell Transplantation in Treating Patients with Lung Cancer.  But, for example, that one is an active trial (since 1999) but is not currently recruiting.

If you're interested in clinical trials, most of them are listed on:  www.clinicaltrials.gov.  If a research facility, university, clinic, etc. is looking for FDA, etc. approvals, they must list via this site.  Hubby works for a company that makes heart devices for the medical industry and all of their studies must be listed and have an "NCT" indentifier number through this site.

We've researched and learned a WHOLE LOT about all of this.  Much more than I ever thought my most incapable brain cells could handle.  But like I've told Mom...   I've come full-circle on this now.  I can honestly say that we've all done our due dilligence and can find no reason NOT to go to Korea.  It seems that most folks come home with, at least, more strength and hopefully more time.  I don't know that this treatment is an actual "CURE FOR CANCER"! but... if Mom has more strength and time, then we can look into the hundreds of current/open "targeted-drug" trials here in the US when she gets back.

So.  We now need to get the OK to go-over date from Nicole (w/Goodgene) and then book the flights.  Don't know what Christmastime is like in Korea and if there will be much treatment scheduled during that time, so we may end up having to wait until January.  But we'll wait and see what she says.  Then we just have to deal with a very uncomfortable flight for Mom.  I will be sure to pour a lot of Tylenol PM into her soda prior to take-off.  <---- (don't read that part, Mom).  ;-)

The next best hope?  Not here, right now, at the moment.  Is it in Korea?  I sure hope so.   It's hard not to be skeptical... and yet, so hopeful.  There is something inside that feels that this is the "right" way to turn now.  Remember all those roads I so oddly keeping talking about??  It appears that this is definitely one of them. 

And which way will you go?           

Whichever way it is... just be sure to look at a map first.

Mom

~ MY MOTHER ~







If only my mouth could properly speak the words that live in the core of my soul.  If only you "just knew" what was there. 


Is it even possible for a child to be proud of their parent?  Isn't it only supposed to be the other way around?  Maybe because I am older, I have the perspective to see you as who you really are.  Yes, my mother... my mom.  But you are so much more and always have been.  You are the most beautiful woman I have ever seen.  You are the most intelligent person I have ever met.  You are the most giving and compassionate person I have ever known.  How blessed was I that God gave me to you?  I can't even use the word "lucky"... the word is "blessed". 


You are a woman who has only walked forward in life, never backwards.  While raising two children on your own, you forged a life not only for us but for yourself.  One that you should be absolutely nothing but proud of.  Every house we ever lived in was one step up from the last.  Each neighborhood a little greener.  How many kids actually get to have their own pony? We were exposed to life in a way that many kids don't get to see.  Not so shielded to miss seeing the man behind the curtain sometimes... but also held high and forward... to see the beauty in what is out there.


I watched you climb up the corporate ladder.  Your work ethic is something I have always admired and something I tried to accomplish in myself.  You are a good friend to people you know and even people you don't.  You have employees and co-workers who trust and admire you.  Neighbors who look out after you and people who pray for you.


I know who you are. 


Mom, you are an "accomplishment".  A work of art.  Heaven built one hell of a woman.  You are beauty and love and strength.  My mouth may not be able to tell you these things, but my heart can.  And it's spilled out all over this page.