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One year ago today (again) ... 

1/24/2014

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A year ago today, I started radiation to my neck.  There was lots of talk about how weak my cervical vertebrae were and how they weren't strong enough to support a rod placement to help hold them together.  There were lots of dire warnings about more fractures (the C4 was broken and the C5 and C6 were quite frail).  I was given instructions on how to get to the hospital for emergency surgery, if needed.  I was given tons of limitations and I had to wear a neck brace 24 hours a day. 

Radiation was by far, quite brutal.  Midway through, I lost my voice and it didn't come back for five weeks.  I was exhausted and I couldn't eat.  Anything I ate came up quite promptly.  I learned to have plenty of plastic bags on hand everywhere I went and both Rachel and Michael would hand them to me while I was driving if I even coughed one time.  There were many times I had to pull the car over to deal with these side effects.

And then there is now.  My neck is fully healed and I have complete range of motion in it.  The tumor that caused the C4 to break remains "dead as a doornail," as does the cancer in the other cervical vertebrae as well.  I am able to exercise daily and yesterday, I even "ran" a bit ... something that I was told a year ago that I would probably never be able to do again.  "Your running days are over" are the exact words that were said.

What a difference a year makes!  The entire medical team is pleased.  I praise God that he gifted this team with brains, training, hard work, dedication, caring and perseverance to reach their goals of becoming medical professionals in order to help people like me.  THEY are the heroes in this disease!  All I do is follow their orders.

I'm living a daily miracle (to which my medical oncologist agrees!) and I couldn't be more glad. 

Let us rejoice!
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Goals

1/21/2014

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The goal of the clinical trial I am in is to stop the cancer from spreading.  That goal has definitely been met!  I have no new cancer anywhere ... including no new cancer in any of my bones.

My scan results indicate that things are pretty much the same as they were two months ago.  Between the three scans, there is mention of healing lesions and mention of very little change (if any). 

All in all, this means that the primary goal has been reached!  Everyone is in agreement that the cancer is staying put and not moving around my body. I am medically classified as "stable."  I will continue on the trial and will have more scans in two months.  Because of the reduction in my tumor markers, it is hoped that the secondary goal of reducing the existing cancer will also be met.

I'm feeling very good physically and have been given conditional approval to try running again.  I'm to listen to my body, though, and the second it hurts, I'm to stop.  That may be 20 seconds after I start!  :D

My glucose levels are as controlled as they are going to be.  I'm learning what works and what doesn't and I must admit to enjoying the weight loss.  I'm down 30 pounds since the beginning of October.  I'll keep pressing on for a few more.

I feel like I'm living a daily miracle.  I still have cancer and I still want it gone.  However, I'm grateful for the gift of each day and I hope to take great delight in each day.  It does help that I'm feeling well again as I'm fully recovered from whatever bug hit me last week.

Rachel's fully recovered from her wisdom teeth removal, but now Michael is down with a cold.  We're hoping he'll be able to go to school tomorrow, but he's pretty congested with lots of sneezes.  Poor kid.

John Ortberg (teaching pastor, MPPC) gave a message on "I have a friend who believes ... suffering disproves God."  His points included most (if not all) the thoughts I've encountered over the years, especially during these past two years.  You can find his message here:  http://www.mppc.org/series/i-have-friend-who/john-ortberg/i-have-friend-whobelieves-suffering-dispro...

You can choose to watch the video, download the MP3, download the transcript or even download a study guide.

I hope you find it as meaningful as I did.
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Staying awake ...

1/10/2014

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Picture
I made it through the day today without taking a nap.

Yes, that seems newsworthy to me!  Last week a new diabetes drug was added to my "cocktail" and it seemed to take a lot out of me.  Eating remains difficult for me because of an extreme lack of appetite.  Additionally, most foods are just not enjoyable to eat.  Therefore, I have a quandary ... I feel bad so I don't eat.  I don't eat so I feel bad!  It's a vicious cycle.

At the same time, it appeared that I had a cold of some sort.  Runny nose and overall malaise settled in hard.  I spent last weekend in rest, sleeping up to ten hours at night and two hours in the daytime.

As the week went on, I began to feel better and the naptimes became shorter.  Yesterday, only 45 minutes and today, none!  Maybe all this is behind me!  I'm back to exercising every day and the California weather has allowed me to take walks outdoors with temps in the 70s.  My kind of sunshine!

I'm getting better at planning meals and having easy to eat foods on hand.  Cheese sticks are my friends!  Today, I also made some egg bake muffins (see photo) so that I would have a high protein and high calorie food readily available.  Nuts and protein bars (no sugar) remain faithful standbys as well.  My glucose numbers seem to be much more consistent now, so I guess the new drug is helping.  My stomach is hurting less as I am now also taking a prescription strength antacid.

Tomorrow (Thursday, January 16) will find me back in San Francisco for my weekly check-in and for my first scans since starting the clinical trial.  We are all cautiously optimistic due to the drop in tumor markers, but the scans will be more informative.  I'll get the results on Tuesday, the 21st. 

English corner for the visiting scholars from China starts up again on Friday!  I'm very excited about this as I've missed everyone.  We've moved our location off the Stanford campus in hopes of having a more consistent place to meet.  (If anyone wants to join us, we'll be at the McDonalds at Page Mill/El Camino on Fridays from 10 - 12.)

Rachel got her wisdom teeth out this week and is a puffy faced teen.  She is such a trooper, though, and hasn't complained much.  She's feeling reasonably well, but will most likely stay home from school another day.

Michael is doing well, progressing in school and staying true to the course.  He is loving his indoor soccer league, especially now that they've won a game!  However, even before the last game, his words were, "It doesn't really matter if we win ... I just really enjoy playing!"  I love that kind of attitude.  I know he tries his best and that's what matters.

We enjoyed celebrating Art's birthday last week.  We are grateful for his steady presence in our lives and his faithfulness in loving us and caring for us. 

I'm still slogging through the book of Numbers in my Bible writing project.  Six chapters to go and then it's on to Deuteronomy!   

May God's grace and peace be with us all as we continue in our journeys.
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Defining moments

1/3/2014

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Two years ago this month, I was told, "There are signs of cancer in your biopsy.  Don't leave Hong Kong as the pathology lab needs to finish its complete study to determine the extent of the cancer.  Invasive cancer cannot be ruled out."

With those words, the direction of my life changed.  I walked back into a McDonalds where my husband and friends were waiting for me while I talked to the doctor on the phone.  (The McDonalds was a below ground one that had poor reception and I had to walk to our nearby hotel lobby to return the call and take notes.)  I remember telling Art and Kenneth and Agnes "He says there's cancer," and that my lip trembled while I said those words.  In spite of my mother dying of breast cancer metastases, I can say I knew very little about the disease or what such a diagnosis even meant.

I remember Agnes praying and using the words, "Vickie's cancer."  I remember it being a very unreal sensation ... my name had been made into a possessive noun, with an apostrophe "s" being added to it with a disease being that which was possessed.  I almost immediately went into inner denial ... I did NOT possess a disease such as this.

I spent the next ten days taking a crash course in breast cancer. I was at a retreat with about 40 other people, but in no way did I want to be the center of attention.  I was surrounded by people who loved me, but looking back, I see how little any of us recognized the shock I was in.  One person told me he found me "resistant" to receiving prayer.  In hindsight, I know that while I was intellectually wrapping my brain around what was going on, I was in no way emotionally able to do the same.  This gives me greater insight for my interactions with newly diagnosed women now.  It really is quite enough to just say, "I'm so sorry," and to remain a constant presence in their lives.

Fast forward to later in the year.  I had been declared free of disease in September 2012 and had finished active treatments on November 29.  I was struggling with the emotional aftermath of such an intense year.  As a family, we had been thrown into a situation that changed our lives every way that could be changed.  We had dealt with a potentially fatal illness, said goodbye to beloved friends, moved halfway around the world, put our children in American public schools for the first time in their lives, and we were all dealing with reverse culture shock that is poorly understood by those who haven't lived abroad for an extensive period of time.  I often struggled with feelings of loss and not knowing what the heck I was supposed to be doing in the United States.  We had a calling to China (known and confirmed by many) but felt our return to the US was driven by health and not by divine direction.  This was especially difficult for me.  I also struggled on how to live following the gift of a miracle.  I learned that I was probably experiencing some form of post traumatic stress syndrome, but I didn't know how to deal with it.  I started looking for a counselor who could be sensitive to my particular situation.

In the meantime, I also experienced extreme neck pain.  I remember telling my friend, Cynthia, that I felt like such a wuss ... that I had gone through cancer treatments, but that my back was almost literally laying me flat.  I have a high pain threshold, but the back pain had me taking prescription pain relievers to no avail.  I talked to my brother-in-law (a spine specialist), and he said it sounded like a herniated disk and recommended an MRI.  I even talked to a physical therapist to find out how to find a good PT for a herniated disk.

I had my first follow-up appointment with my oncologist on December 20, 2012.  She ordered the MRI for my entire spine and it was set up for January 2, 2013.

In January 2012 upon my first diagnosis, I wrote the following words:

"You never know when your life will change.  I can think of several momentous changes in my life . . . when my family moved from Oklahoma to Mississippi; my personally choosing to follow Jesus at age 9 (and subsequently realizing that I shouldn't lie or exaggerate anymore!); my first date; my first move to China in 1989; my mother's death in 1989; my first date with my now-husband; having children; our move to China in 2005, etc.  These are big changes that in many ways could have been anticipated, but in many ways could not have been anticipated."

January 3, 2013 (one year ago today) contained yet another defining moment in my life.  I was with my elderly parents-in-law as they visited friends of theirs in San Jose.  I was sitting in the corner of the room and noticed I didn't have good cell phone reception there.  My back was also hurting, so I got up and stood in another part of the room to stretch.  Almost immediately, my phone rang!  (I claim divine intervention on this one!)  I looked at the others and said, "It's my doctor" and took the call.  When I heard my oncologist's voice, I immediately knew I was not going to be getting good news.

Throughout the time I had the pain, I had mentioned to Art my concern that I had bone metastases.  He didn't think it was possible since the tumor removed in September was cancer free.  I had also spoken to two radiation oncologists about my concern and both them didn't think it was likely (didn't say it wasn't possible) to be bone mets.  Deep down, though, I think I knew.

"Vickie, you have significant disease up and down your spine."

And with those words, my life's journey changed yet again.  My immediate response was literally, "What's next?" and a plan was put into motion.  There were lots of appointments with lots of doctors and I gained a new appreciation for medical personnel of all kinds.  I met with specialists, had more scans and my life as a woman with an additional identity label of "terminal cancer patient" began.

One of the humorous points of that particular day was when my mother-in-law asked me what the doctor said.  I told her that I had cancer in my back and neither she nor I knew what to say after that.  I then took her and my father-in-law and their two octogenarian friends out to lunch!  I didn't know what else to do.  They ordered food and I excused myself to make some phone calls.  Calling Art while he was at work to give him such news remains one of my most painful memories of this journey.

It's been an eventful year.  I've had plenty of ups and plenty of downs.  I think the ups have outnumbered the downs, but at least I've become more comfortable in admitting the downs and embracing them for what they are.  I've never considered myself much of an emotional "feeler" but this year has changed that.  Coming to grips with my own mortality is teaching me a lot.  At times, I feel very much a part of a larger circle of relationships and at other times, I feel very much alone.

I understand that I frighten people.  I frighten women who have had breast cancer because I'm the "walking dead" of the disease they hope that will never return to their bodies (and of course, I hope the same for them!).  I frighten organizations like the Komen Foundation because I'm not one of their triumphant pink survivors who can echo their mantra "early detection saves lives" because I did everything they recommended and still didn't get an early detection.  I frighten women who have never had breast cancer because I'm still significantly younger than the average age of diagnosis (62) and they know that they could still be diagnosed with the same disease.  I frighten my children because they know I can die and that things can change very quickly.  I frighten those who are afraid to die at any age, much less at an age that is younger than an expected life span.

Being the face of fear, whether it's spoken or not, is a difficult role to live.  Because of this, I seek out those who are walking similar journeys.  Even that it difficult, though, because we all know we are making relationships which are going to result in death.

I lost five friends to cancer this year, ranging from age 2 - 57.  Whether I knew them personally and had face-to-face interactions with them or whether I knew them via the internet and had only email and phone conversations with them, their passing remains extremely painful.  I mourn Christina, Debbie, Janie, Franca and Michelle.  My life is richer as a result of their being a part of it.

One year ago, my life changed.  Today, my life is changing again.  Tomorrow, it will change yet again.  A friend of mine posted this the other day and it resonated with me:

"They say you live once. It's not true. You only die once and live every day." (Julie Munesco)

So very true.  I am alive today.  God willing, I'll be alive tomorrow.  I have abundant life in Christ and my definition of abundance includes fully trusting HIM for this day.  At times, I will waver in that trust, but for today, the only day that I have right now, I am simply being abundant. 

I will have a physical death one day, but it won't be the end of me.  Until then, I will continue my mantra, "If I'm not dead, I'm not done."  This is, of course, referring to my physical life on earth, because after my death, I won't be done either, but I think all of you know what I mean. 

My God's grace and peace be with you throughout this day and throughout any days he gives you and me in the future. 

Happy New Year!
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    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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