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Living to be 104 ... or not

1/30/2013

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My mother died when she was 52.  Since that time, I've said, "I'd like to live to be 104, twice as long as my mother."

Interesting.  I never really put much thought into how long I would live, but I had that 104 number in the front and back of my mind most of the time.

Now, I'd like to live as long as my mother did.  I'll turn 50 in a couple of weeks.

I always assumed that I would outlive my mother's years.  I don't really know why I assumed that, but I did. 

I still hope to outlive her.  But, as always, there's no guarantee.  There never was a guarantee.  That was always just wishful thinking.  I do know that I celebrated my two sisters and my husband's 53rd birthdays, though, as major milestones!

As I've said from the time of my diagnosis, cancer has not changed the hour of my death.  That was ordained before I was born.  However, it's my hope that cancer is changing the hours of my life.  That it's changing how I live.

We all have limited time left.  None of us are immortal and none of us will live forever.  Whether I have two years, five years, or fifty years  isn't the question.  The question is, "What am I going to do with the time I've been given?"

The book of James says it well:

"Just a moment, now, you who say,
“We are going to such-and-such a city today or tomorrow. We shall stay
there a year doing business and make a profit”! How do you know what
will happen even tomorrow? What, after all, is your life? It is like a
puff of smoke visible for a little while and then dissolving into thin
air. Your remarks should be prefaced with, “If it is the Lord’s will, we
shall be alive and will do so-and-so.” As it is, you get a certain
pride in yourself in planning your future with such confidence. That
sort of pride is all wrong. No doubt you agree with the above in theory.
Well, remember that if a man knows what is right and fails to do it,
his failure is a real sin."  (James 4:13-17, Phillips New Testament).

My life is but a puff of smoke.  Here today, gone tomorrow, no matter how many tomorrows may come.  God willing, I'll have lots of tomorrows.

What will I do with them?
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Moving Forward

1/29/2013

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I started radiation treatments on Thursday, the 24th.  The photo shows me "stabilized" on the table with the mask that was made the week before.  I am unable to move my head, neck or shoulders while I'm in that contraption and I'm very grateful that I'm not claustrophobic.  I'm in that thing for about 10 minutes each time.  I will have a total of 20 treatments, ending on February 20.

I met with my medical oncologist today and she was very encouraging.  While she admits to being baffled as to why my cancer returned as rapidly and as extensively as it did (she calls that "very uncommon"), she is hopeful that I will have a good response to the treatment I am now undergoing.  She does not use the word "cure" as a goal, but says that to extend my life as long as possible with good quality is the goal.  Because my cancer responded so positively to the earlier treatment (chemotherapy), it is hoped that it will respond just as positively to the current treatments (radiation and medications).  About 7% of patients with my type of cancer have a complete response.  (They just don't call it "cured!")
 
I've been cleared to exercise on the elliptical, recumbent bike or slow treadmill.  Just need to be careful of falling.  My oncologist believes that I may eventually get to return to running!  I may get that 5K in this year after all! 

She approved my following a low-carb food plan as losing weight will reduce stress on my body all around.  I've lost 12 pounds since my last visit on Dec 20.

One thing she emphasized to me is to keep them informed of any changes.  She noted that I'm "not a complainer," so I need to really let them know when things are "off."   I probably didn't communicate my pain levels enough on my last visit.

In brief . . . radiation until Feb 20.  Injections on Feb 16.  Follow-up with neurosurgeon on Feb 25, as well as a brief check-in with the oncologist.  Depending on how my neck is healing, I may still need a rod placed or some "bone cement" to help my bones remain strong. 

We continue to pray that God's healing hand will be upon me.  The doctor used the term 5+ years (that's about as far as anyone goes out), but we're asking for God's grace.  Obviously, as I told the doctor, "I'm here today and I'm grateful," so each day is a gift.

My morning devotional verse was:  "To the only God our Savior be glory, majesty,
power and authority, through Jesus Christ our Lord, before all ages,
now and for evermore!" (Jude 25)

Amen!

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Treatment plans

1/18/2013

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It seems hard to believe that only two weeks have passed since I found out that I had bone metastases.  I feel like I've been taking a crash course in bone mets and all the options out there.  It's been helpful for me to do all this reading as it helps me understand what the doctors are talking about in our consultations.

I met with two radiation oncologists (RO) this week . . . one in San Francisco and one in Palo Alto.  I used the one in Palo Alto for the radiation treatment for my breast.  Both ROs had the same treatment plan in mind . . . to address all the cervical vertebrae and the upper thoracic vertebrae.  Their dosages and length of treatment varied a bit, but nothing too drastic.

Due to convenience and familiarity, I've chosen to go with Palo Alto.  The RO in San Francisco said that there was no advantage to my going to San Francisco other than better communication between doctors.  The SF RO encouraged me to go to Palo Alto for my treatments (talked herself out of a job, there!).

My Palo Alto RO was very encouraging and seemed optimistic.  Radiation to deal with the most severe area (neck) and systemic treatment (Tamoxifen and Denasumab) to deal with the rest.  It will take several months for my bones to regrow, so it looks like this neck brace is here to stay for a while!

I had my simulation and mapping appointment today (they were ready for me!) and it was very interesting.  They made a mask of my face and shoulders which clamps to the table to hold me still during treatments.  They beams will be coming from different angles as they will try to keep side effects to a minimum.  I will most likely get a sore throat and have fatigue.  (I've attached a picture of the mask . . . good thing I'm not claustrophobic!)

I will have a total of 20 treatments, starting Jan. 24, ending Feb. 20.  I already have a follow-up appointment scheduled with the neurosurgeon on Feb. 25 to monitor progress.

I had blood drawn today to check my calcium and vitamin D levels.  My thyroid stimulating hormone (TSH) will be checked as well.  I also got a flu shot.

I do have to go back to San Francisco tomorrow (Saturday) for the 6th time in 17 days!  This appointment is to get an ovarian suppression injection, as well as a bone strengthening injection.  This will be a once-a-month thing for an indefinite period of time.  Much easier than chemotherapy, though!

This morning, I got off track on my devotional and thought it was January 19 all day long!  I even wished two friends a happy birthday because I thought it was the 19th.  The verse for the day was "In repentance and rest is your salvation, in quietness and trust is your strength."  (Isaiah 30:15).  As I read this and remember the promises made to Israel, I was reminded about how my trust IS in God and not all this medical science.  I believe God can use medical advances, but ultimately, healing is from him.  However, even though my deepest longing is to rest in Christ, I fully admit my absolute frailty in doing so.  I long to be "doing" something, even when it comes to my walk with my loving Father.

Much later in the day, I noticed I had the wrong day open!  (I keep my devotion book open beside my computer all day so that I can re-read the passages whenever I sit down.)  I flipped back to the 18th to see what I missed:

"On my bed, I remember you; I think of you through the watches of the night.  Because you are my help, I sing in the shadow of your wings.  (Psalms 63:6-7)


I smiled when I read that verse!  As I've mentioned before, I'm sleeping very well, but I do have to wake fully to change positions.  Each time I wake up, I generally pray a short prayer.  Sometimes, it's for myself and my neck/back/removal of cancer and sometimes, it's for the sleeping members of my family.  Sometimes, it's for other people.

I've been setting my alarm for 6:00 a.m. and I'm learning to pray through my day before I get out of bed.  I occasionally have a song in my heart in the early morning hours, so the verse for today was completely appropriate.

Our little kitty is doing well and he is already being a good object lesson for me.  He's a social little guy, but also afraid of his surroundings at the moment.  He knows me and loves me (smothers my hand with kitty kisses) and often, when I sit down on the floor at his level, he literally catapults himself into my lap and starts purring.

He doesn't have to do anything for me to love him!  He completely depends on me to care for him and to hold him and to protect him from the scary world he's been thrown into. 

How so very much like God!  I don't have to do anything for God to love me!  I completely depend on God to care for me and to hold me and to protect me from the scary world I've been thrown into.

Purr.
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Continuing to be grateful

1/15/2013

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There is so much for which to be grateful.  As I mentioned yesterday, I've been sleeping pretty well.  However, last night, I slept amazingly well!  I woke up completely refreshed and completely pain free.  I've felt that way most of the day, with only a few twinges here and there.  I keep telling myself to not do anything, though!

Someone is going to come into our house twice a month to do the deep cleaning that I no longer can do.  She'll change our sheets during those times as well.  I am grateful she had openings to do this.

We got a kitten today.  His name is Jesse and he's quite precious and very purry.  We've been wanting a pet since we got back, but wanted to wait at least six months before we took one on.  We are at six months and 12 days!

Some friends (the Missions:Possible team and others) will be praying for us on Saturday night. 

Location:  Devanney's House
Format: Potluck
Time: Saturday January 19th
Start: 5:30PM
Dinner: 6-7PM
Prayer: 7-8PM
Socializing: 8PM+ for whoever wants to stay and visit

Please let me know if you need their address.

Tomorrow, I will have lunch with friends I haven't seen for a while.  I'm very much looking forward to it.  I'm also gearing up for my two days of consultations up and down the peninsula. 

Today's devotion was entitled, "How great is God!" . . . note the exclamation and not the question.  "God is exalted in his power.  Who has prescribed his ways for him?  How great is God -- beyond our understanding.  (Job 36:22-23)  I can't begin to understand his ways, but I can be thankful that he loves me anyway.
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Community

1/14/2013

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We're a fortunate family . . . surrounded by community.  When we lived in China, we were also surrounded by community.  People willing to go the extra mile (or extra hundreds of miles) to help out.  This continues here in the States.

Yesterday, we were blessed with a meal from someone we hardly know.  Today, a friend brought me to Costco and did all the loading and unloading.  We've received gift cards from friends for helpful places.  One friend sent me a text message asking for an "assignment" so she could be doing something besides praying!  (W, I'll get back to you on that one!)

These are all big things to be thankful for.  Some little things come to mind as well.  I like to buy the organic chicken from Costco.  It was on sale, so I bought two packages today.  They come in individually wrapped pieces.  I could easily open the big bag at the table and carry them to my freezer . . . all while staying in my restriction limit for lifting.

I am feeling well.  I have very little pain, which is a big improvement over late November/early December when the pain was so great that I tried taking Vicodin for it (didn't work).  The last time I took anything was a couple of ibuprofen back on January 2 or 3 and I don't think I really "needed" it then.  It was more of a "just in case" before I went to bed.

I'm sleeping reasonably well.  I fully wake up to change positions when I need to, but I am able to fall back asleep fairly easily.

I have two consultations with radiation oncologists this week.  One on Thursday and one on Friday.  The Thursday appointment is in San Francisco and the Friday one is in Palo Alto.  Radiation could begin as early as next week.

Two medications are being prescribed this week.  One will ensure that my ovaries have completely stopped working (thus, stopped producing estrogen) and the other will be a bone strengthening drug.  Both of these are once a month (or every three week) injections or infusions.  Neither of them have the severe side effects of chemotherapy.

"The Lord is near to all who call to him, to all who call on him in truth."  Psalm 145:18

God is holding me, quite safely, in his hands, regardless of how this journey turns out.  Yes, it is my heartfelt plea that I be given a few more years on this earth, but none of us are guaranteed those years.  One day at a time . . . celebrate that day and join in the community around you.

We don't say this enough.  Americans either throw around "I love you" with little thought or with little discrimination.  I'm one who is hesitant to use the words for fear they would be misunderstood.

What's there to misunderstand?

I LOVE YOU!

Yes, I do.  As Bilbo Baggins said, "It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to."

You just never know where community may take you.  Go out boldly and share the joy.
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A Day of Being Still

1/11/2013

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I have to admit that I'm not a big fan of the Psalms.  They seem quite schizophrenic to me . . . extreme highs and extreme lows.  Given that my natural personality is one of a more even keel, I've been unable to relate to most of the psalms, most of my life.

Same goes for now.  However, one of them (perhaps the most famous of them!), came to mind today:

"The Lord is my shepherd, I lack nothing.
2     He makes me lie down in green pastures,
he leads me beside quiet waters,
3     he refreshes my soul."  (Psalm 23:1-3)

It is so true.  I lack nothing.  I'm being cared for in many ways and dang it!  I'm being forced to lie down in green pastures!

I can't DO anything right now!  I can't clean my house, I can't lift items for grocery shopping, I can't lift anything heavier than a gallon of milk.  I can read, knit (which is hard to do with a cervical collar) and cross stitch.  I can walk.  I can lift one plate at a time.  I should refrain from bending a lot or extending (reaching) a lot.

All of this is to protect the bones in my neck.  One of them is very fragile (the C4), with the C5-C7 being significantly weakened states as well.  I will be starting radiation very soon, as well as starting some bone strengthening drugs to help combat what's happening.  Radiation will also be used to address the lesions throughout my spine and pelvis.  

I have one "spot" on one of my ribs.  Other than that, the bone metastases are limited to the spine and pelvis.  This is good news.  There is no indications of disease in any organs, or in my lymphatic system.

But . . . back to the resting thing.  I will most likely have to wear the cervical collar up to six months while the bones regrow.  We are trying to avoid spinal surgery at this time as there is a good chance that the surgery would fail and have to be repeated, as well as the fact that surgery would delay treatment for the entire spine (would only address the neck).

So . . . I'm resting.  Literally, when I'm home, I do as little as possible.  Today, I napped for two hours.  I cooked dinner (very slowly) and that's it. 

It's hard.  However, I'm taking the time to rest and to listen again for God's voice.  I do pray for others as well. 

I'm so flawed.  I don't want to appear as if I always have it together, because I most certainly do not!  I cry and I sleep, both of which are good.  I laugh and I eat, two other things that are good, too!  I pray and I listen.  I'm not sure what I'm going hear, but I pray that I am giving myself time to listen well.

As always, the community support is amazing!  Our many thanks to all of you, both near and far.
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Best Bad News

1/11/2013

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Thank you so much for holding me up yesterday while I was waiting for
the phone call.  It never came throughout the day and at 9:30 p.m., I
sent an email to my doctor, asking if anyone had had a chance to review the scans yet and then I went to bed.  I am sleeping reasonably well, although, I do wake frequently due to changing positions and needing to be careful in doing so with my neck brace.

At 1:00 a.m., I woke up and checked email.  My doctor has been known
to send emails at 11:00 p.m. and sure enough, she had answered me at 10:20 p.m. 

There are no other sites of disease except for the bones!  Praise God! 
While my prayer was for no cancer at all, I am accepting this news with a
grateful heart. 

We will be charging full speed ahead on getting radiation started immediately.  I'm still not sure where I'll be having radiation . . . either San Francisco or Palo Alto.  I should also be starting a couple of medications very soon as well that will help build bone strength.

My devotion this morning (from "In the Shadow of His Wings") had this verse:  "After the earthquake came a fire, but the Lord was not in the fire.  And after the fire came a gentle whisper."  1 Kings 19:12.  May we all listen for God's gentle whisper as we travel through this journey.  His hand IS at work, one way or another. 

Much love,
Vickie
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Still Waiting 

1/10/2013

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It's 3:00 in the afternoon on Thursday, Jan 10, and I still have not heard from the doctor.  I had a "false alarm" phone call this morning when an administrator called to confirm contact details, but it was a routine call and completely non-related to my current situation.

Each minute belongs to the Lord.  "Pray about everything; worry about nothing" is my mantra.  My life is truly in God's hands.  I'm just more aware of it during this time.

Thank you for all you love and support.  You make waiting easier.

In His Constant, Never-Failing Grip,
Vickie
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Storming Heaven's Gates ...

1/7/2013

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"It is good to praise the Lord and make music to your name, O Most High, to proclaim your love in the morning and your faithfulness at night (Psalm 92:1-2)."

I'm not a big fan of music, but this morning, I turned on my Christian radio station from Pandora and enjoyed a few songs.  It was the first morning that the kids were back in school and I was reveling in some stillness and some much needed solitude.

My friend, Wen, came to pick me up at 2:00 for my neurosurgeon's appointment.  We ended up waiting for a long time, since I was a "squeeze in" patient.  However, he was very encouraging.

1.  He does not recommend surgery at this time.  He believes the risks outweigh the benefits and thinks that radiation is the route to go.  However, because I am considered to be "very fragile," he wishes for me to wear my cervical collar as close to 24 hours a day.  This will take some adjustment for me to sleep in it, but I will eventually get used to it.

2.  He will meet with the oncologist with his recommendations.  He had already told her his preliminary recommendation of no surgery, but needs her to sign off on the final plan.  He was very pleased with my physical exam today and said I was "completely normal" in a neurological sense.

3.  I have a PET-CT scan on Wednesday at 4:15 p.m. Pacific time.  This scan will reveal if cancer is present elsewhere in my body.  A complete treatment plan will be put together based on the results of this scan.

STORMING HEAVEN'S GATES:  It is our fervent prayer that Wednesday's scan shows NO CANCER!  What a miracle that would be . . . to go from having cancer in my neck and spine to having no cancer at all!  We are asking everyone to pray this request in Jesus' name.  Should God wish to continue to heal through medical science (as He did in my breast), then we are asking for bone mets only.  First and foremost, though . . . no cancer at all!
 
God is faithful, regardless of Wednesday's results.  However, we passionately believe that he has said that we can pray confidently and boldly, asking for such healing.

Pray on!

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Diagnostics in process

1/7/2013

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"This is the day the Lord has made, let us rejoice and be glad in it."

On Friday, I had another CT scan done on my neck to review the damage resulting from the C4 fracture.  A neurosurgeon reviewed the scan and called me on Saturday.

At this time, the C5 and C6 vertebrae do not look strong enough to support any repairs done to the C4.  He does not want to have to do repeated surgery, one vertebrae at a time.  Therefore, he is recommending radiation first to shrink the tumors in that area, most likely followed by bone fusing/rod placement surgery.   Currently, I'm wearing a cervical collar that reduces movement in my neck.  My spinal cord is not compromised at this time and the desire is to keep it that way.

I will have a physical exam by the neurosurgeon this afternoon (Monday) at 4:00.

A PET-CT scan has been scheduled for Wednesday, January 9.  This is a crucial diagnostic tool that should let us know if there are metastases elsewhere in my body. 

It is our fervent prayer that the PET-CT scan shows all cancer to be gone!  Wouldn't that be a miracle that can only be attributed to God?!?!  Complete disappearance of this disease in a matter of days?

Barring that miracle, we ask for the miracle of bone mets only.

Thank you for sharing our journey.  We have today . . . let's make the most of it! 
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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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