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Diary of a clinical trial ... day 2

11/26/2013

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It was nice to be able to stay in the city last night and to not have to wake up super early to make the drive.  Once again, though, I didn't sleep that well ... as nice as a hotel can be, it's just not home.  I'm sure I'll sleep fine tonight, back in my own bed.

I was at the clinic at 8:00 a.m. and was put in a different room.  This one had no bed, only two chairs.  My "roommate" wasn't in yet, so I got first choice.

I've already met most of the nurses on the floor.  (This ward is specifically for clinical trials.)  I got my vitals taken and had my morning EKG and then settled down in the chair for the IV insertion.  My left arm is pretty trashed due to all the pokes last week and yesterday and there hasn't been enough time for them to heal to get another good spot.  They tried the last area and it failed.

They moved to the right arm.  Because I had lymph nodes removed from my right armpit during my lumpectomy in September 2012, all medical procedures should be done on the left arm in order to avoid flow issues and infections on the right.  However, since the purpose of the IV was to simply remove blood and not infuse a medication, using the right arm in the case is allowed.

The nurse I had has 22 years experience.  He is the one who successfully inserted the IV yesterday after someone else couldn't do it in two attempts.  His first attempt on the left hand didn't work, so he tried the right.  He inserted the needle and when he tried to push it in further, I felt an amazing shock and tingle down my middle finger, which quickly spread to my pointer finger and thumb.  I yelped (couldn't help it!).  He quickly pulled the needle out, but it was clear that he hit the radial nerve.  I've only cried once in a doctor's office since being diagnosed with cancer, but a tear did come to my eye with this one.  I think the sheer unexpectedness of it was almost as bad as the pain itself.

He felt so bad.  He kept checking on me over and over and over and we were both relieved with three hours later, my fingertips were no longer numb.  Yikes!

Per procedure, when one nurse can't get an IV in after two tries, a second nurse makes the third attempt.  After a lot of heat packs and slowly massaging each vein (getting to know them), she was able to get a successful IV insertion.  She's the nurse who couldn't get one yesterday.  (I learned more about veins today than I ever have in the past.  I never really thought about them before and they are way more complicated than I imagined!)

Once the IV was in place, the rest was simple.  I took the oral drug at 9:25 again (coincidence ... it could have been earlier) and sat in my chair, reading and writing until 11:25 when they came to draw blood.  By this time, my roommate was there and she and I chatted as well. 

Today, I only had to have two blood draws after dosing ... one at two hours post dose and one four hours post dose.  Today was a fasting day until that four hour point and my stomach growled quite noisily all morning!  As soon as they were finished at 1:25, I headed down to the hospital cafeteria for a salad. 

And that was it.  Simple and mostly routine.  I started feeling queasy this afternoon and evening, but it's pretty mild.  I'd describe it as "noticeable" and not as anything to slow me down too much.

And that's that.  Trial-wise, I'm on my own for the next five days.  I'm to take the medication on my own at roughly the same time each day.  I'm to record any reactions and go on with my life as much as possible.  I go back on Monday.

It's good to be home with my family.  It's good to be celebrating Thanksgiving.  We're joining the Devanney family and others as well as five visiting scholars from China for a grand feast!  We have so much for which to be grateful.  (Nearing the top of my list is modern electronics.  I love my computer and even though it's big and clunky, I'm so grateful for it.  I dropped its power cord yesterday as I was packing up and cracked the adapter box which pretty much destroyed it.  I am very happy that I could buy an HP power supply cord at my local Best Buy store and plug back in. Yup, it's the little things that bring great delight. I'm also grateful to come home to a clean house, thanks to a loved and trusted house cleaner.  Thanks, Corinne!)

I stopped by Stanford to visit with Miao Miao and her foster parents today.  MM is doing well and they are hoping to be released from the hospital soon.  Please stop by her Caringbridge site to learn more.

I don't know if I'll write again before Thanksgiving (don't want to inundate you), so I'll close with a well-known blessing from Numbers 6:24 - 26 (NIV):

‘“The Lord bless you
    and keep you;
  the Lord make his face shine on you
    and be gracious to you;
  the Lord turn his face toward you
    and give you peace.”

Amen.
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Diary of a clinical trial ... up to day 1

11/26/2013

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I have the feeling that many people will say that I’m perpetuating the image of the “cheerful” cancer patient.  Trust me … I’m not doing that!  However, I am generally a cheerful person, so that comes out in my writings.

There are those who say that all one has to do is to remain positive and that makes a big difference on how effective a treatment is.  I beg to differ with that statement because I’ve seen too many extremely positive women die of this disease.

On the other hand, though, a positive attitude can and does help one get through the treatments.  It doesn’t change the treatment itself, but it helps me get through the actual time involved, as well as deal with any discomfort that comes with dealing with the disease.

Last week, I drove to San Francisco four times.  On Monday,I had my spine checked out and x-rays taken of my neck.  The broken C4 continues to heal very well and I have few, if any, problems with mobility and range of motion.  The neurosurgeon is pleased.

Tuesday included getting my monthly bone strengthening shot. This shot is proving to be very effective as my bones remain strong and show no danger of imminent fractures. Everyone is happy with this, especially me!  :D 

I went from the infusion clinic (where I get my shot) to the blood lab.  I had ten vials of blood taken from me.  I had to chase down a vial that was required by this clinical trial, but it was relatively easy to get. 

Following labs (I also had to do the infamous “pee-into-a-cup”test!), I headed over to the radiology department for an injection for a bone scan.  I had to have an IV inserted since later on in the afternoon, I would be getting a CT scan with contrast.  The IV was hard to get … I’m now labeled as someone with “tough skin and fragile veins.” I look like a drug user now because my arm is riddled with bruises.  Still, the mission was accomplished and the injection given.  I then had a consult with the clinical trials coordinator.

After lunch, I had my CT scan which was moved up from 4:00to 1:00.  I have nothing but good things to say about the medical personnel at UCSF … they are awesome people, sensitive to the needs of their patients, and in my case, aware of my long day and worked tirelessly to shorten it for me. Following my CT scan, I had the bone scan.

Wednesday included crossing two picket lines, one at each hospital I had to go to.  Support staff had grievances over how management responded to a strike they had back in May, so they struck again.  I felt this one was truly frivolous and I join the ranks of those who say that medical personnel shouldn’t be allowed to strike.  While not difficult to cross (no one bothered me), it was uncomfortable.

I had an eye test and got my heart checked out.  Both were deemed “fine” and“unexciting.”  Yes, normal is good!  

All results of the screening tests revealed that I have had no cancer progression and that things looked very stable.  This was very good news since I had been off treatment for a month.  I was given the“seal of approval” to start the clinical trial on Monday.

I didn’t have to go back until Friday where another four vials of blood were drawn.  There’s a difference between blood taken for screening purposes and blood taken for the actual trial purposes.  I met with the clinical trials team again,finalized details and went home for a weekend with my family.  Full of thanks and praise that everything was stable.

On Sunday night,I drove up to the city again, only this time with no traffic!  I didn’t know I could get to my destination in only an hour (It usually takes a minimum of an hour and fifteen minutes and sometimes, up to an hour and a half or more.)!  I checked into a hotel (paid for by the drug company) and got ready for bed.

I have to admit, it was hard for me to leave my family on Sunday night.  It brought back emotional memories of my leaving to go to Hong Kong for my chemotherapy treatments.  I didn’t like it at all.  However, after making the drive, I admitted that I enjoyed the lack of traffic.  I like knowing that while I’m spending two nights away from home, that I’m only a short drive away as opposed to the 1,134 miles Hong Kong was from our home in China.

I had a hard time sleeping on Sunday night … I admit to being slightly nervous about the trial. I pray constantly that this is what God uses to bring about healing,even though the medical team admits up front that the treatment is about control and not cure.  I know God can choose to intervene in a miraculous way and bring about “no evidence of disease” through this trial and that’s what I’m asking for.

Monday dawned bright and clear.  I woke up with a song in my heart.  After months of waiting (we originally tried to get me in the trial back in August) and after months of tests, scrambling for biopsies, etc., the trial was going to begin!  I arrived at the hospital at 7:45 a.m. and was almost immediately placed into my hospital room.  I was loaded with two project bags (one with books and notebooks and one with cross stitch) and my bag of vitamins and supplements.  I was told to bring the actual bottles and not just a list, so that’s what I did … all fourteen of them!

The pharmacist went through all those bottles as I laid in the bed with EKG wires hooked up to me. I haven’t taken any of them in the month I was off treatment (thinking I needed to have everything out of my system) and she applauded that action.  She went through each one, making comments and asking questions.  At the end, she only eliminated four of them … CoQ10, bee pollen, kelp (iodine) and the probiotics.  I had already decided to discontinue the bee pollen (only have four pills left) because it didn’t do anything for my white blood cell count, but I was surprised by her asking me to discontinue the others.  The main reason for doing so makes sense, though.  I’m taking an experimental drug and there has been no studies on the interaction of CoQ10 and iodine with this drug.  They don’t know if there would be problems with them or not, so to be on the safe side, not taking them is best. 

She told me that the trial drug is classified as an oral chemotherapy and given the chance that I could experience what’s known as a “numbers crash” that taking a live culture (found in probiotics) isn’t recommended.  That one’s out for now.

All in all, I was very encouraged.  I do a lot of reading about vitamins and supplements (I know that supplements are not regulated, but I use the Sloan Kettering site on herbs and botanicals for trustworthy information) and to find out that most of what I was taken was approved by the clinical trials team was nice and reaffirming.  

I had to have another IV placed for the many blood draws that happen throughout the day.  It took them three tries … my veins did not cooperate very well.  Ten wires were left “stuck on” various parts of my body as my heart is continually monitored throughout the day.

My first dose of the trial drug was at 9:25 a.m.  I had blood checks done every twenty minutes the first hour and then every thirty minutes the second.  Then it dropped to once an hour and then to once every two hours.  So far, so good.  No negative reactions.

While waiting, I received my lab results from last week.  There is one tumor marker, CEA,that has proven to be very reliable indicating progression of disease for me.  It has risen steadily ever since my Stage IV diagnosis.  It’s gotten to where I expect it to rise each month and I’m no longer emotionally crushed when it does.

Given that last week’s scans showed no progression, I was curious about what the CEA would be.  I told Art, “I know it’s going to be higher, but how much higher is what I want to know.”  I was absolutely amazed to see that it was the same as it was last month! This is confirmation that the disease is, indeed, stable!  I almost cried with gratitude.

Stable isn’t the same as a cure, but it can be a start.  We have to wait and see.  However, it gives me increased joy for this day and for what I can do in it.  This stability may not be permanent, but it’s what I have for now. 

The day ended a bit earlier than expected due to their getting me “dosed” so early.  They needed a full eight hours of observation, so I was out of the hospital at 5:30!  I grabbed some food and went back to the hotel to enjoy the 49er football game on TV. Fatigue hit by 9:20, though, and I was sound asleep by 9:30.

Tuesday will have less time in the hospital … about 6 hours.  It should be about the same as Monday except for the fact that I have to fast leading up to the dose point and then another four hours!  I think I will be hungry for lunch!

Thank you for sharing my journey.  It’s only by God’s grace (not by positive thinking!) that I am still here and doing as well as I am.  I continue to pray for those who also have this disease (and other difficult diseases and/or situations) and ask that you do the same.

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Peering into the abyss ...

11/23/2013

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"Strange as it may sound to modern ears, the contemplation of one’s own death is among the most time-honored approaches to personal transformation.  In our day of runaway narcissism it is a practice we would do well to revive. What would happen if you were to die today?  If I were to die today?  One of the most sobering insights from such a meditation is the realization that life would continue right one without us –and quite well for that matter.  The sun would come up the next day.  People would go about their normal duties.  Nothing of substance would be changed." 

The above is a continuation in the practice of solitude as written by Richard Foster in "Celebration of Discipline."  It's hard hitting for me because on Saturday, I lost another friend.  Dying at age 40, leaving her husband and 13-year-old daughter is something that just "should not happen."

I find myself thinking that we should all stand still in time, just as Michelle will for us.  While I firmly believe she is alive in Christ and that she is fully healed now, I struggle with her absence.  I struggle that the sun is still shining brightly and that life is so vibrantly going on for the rest of us. 

Michelle was a part of a group of 50+ women who came together because of the common diagnosis of breast cancer at a common time (late 2011/early-mid 2012).  We were drawn together because we were going through the same treatments at the same time.  We lamented side effects, laughed at hair loss, took pictures of hair regrowth, cried at the impact all of this was having on our families.  

Michelle's cancer was quite aggressive.  She was clear of known disease in November 2012, but recurrences were found in February.  It quickly moved to her bones, lungs and liver, never responding to any of the treatments that were tried.  On November 7, she decided to stop treatments completely so that she could have some good days before her death.  She and her family made some memories and on Saturday, December 21, Michelle left us.

Living hurts.  Dying hurts.  I'm caught in the middle of not wanting to live (longing for eternity with Christ) and of not wanting to die.  Of wanting to make a difference in this world and of just slipping into the quiet.  The world doesn't revolve around my existence.  The world will continue along without me just fine.

And that hurts.  It hurts that my life is going on while Michelle's life on this side of eternity has stopped.  It hurts that the same thing will happen when it's my time to pass through the veil as well.  

My thoughts went to the book of Ecclesiastes in the Old Testament.  It's a sobering book ... going through joys and sorrows.  However, the last chapter does summarize things well and helps to provide balance for me.

Honor and enjoy your Creator while you’re still young,
Before the years take their toll and your vigor wanes,
Before your vision dims and the world blurs
And the winter years keep you close to the fire.

In old age, your body no longer serves you so well.
Muscles slacken, grip weakens, joints stiffen.
The shades are pulled down on the world.
You can’t come and go at will. Things grind to a halt.
The hum of the household fades away.
You are wakened now by bird-song.
Hikes to the mountains are a thing of the past.
Even a stroll down the road has its terrors.
Your hair turns apple-blossom white,
Adorning a fragile and impotent matchstick body.
Yes, you’re well on your way to eternal rest,
While your friends make plans for your funeral.

Life, lovely while it lasts, is soon over.
Life as we know it, precious and beautiful, ends.
The body is put back in the same ground it came from.
The spirit returns to God, who first breathed it.

It’s all smoke, nothing but smoke.
The Quester says that everything’s smoke.

The Final Word

Besides being wise himself, the Quester also taught others knowledge. He weighed, examined, and arranged many proverbs. The Quester did his best to find the right words and write the plain truth.

The words of the wise prod us to live well.
They’re like nails hammered home, holding life together.
They are given by God, the one Shepherd.

But regarding anything beyond this, dear friend, go easy. There’s no end to the publishing of books, and constant study wears you out so you’re no good for anything else. The last and final word is this:

Fear God.
Do what he tells you.

And that’s it. Eventually God will bring everything that we do out into the open and judge it according to its hidden intent, whether it’s good or evil.  [The Message] 







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All systems go!  The countdown begins!

11/22/2013

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As we go into Thanksgiving week, Art and the kids and I realize we have much to be grateful for.  This time last year, we were still settling in after our relocation from China and Art didn't have a job yet.  I was exhausted from radiation treatments for my primary diagnosis and suffering from major neck pain due to the not-yet-diagnosed bone metastases.

Fast forward to this year.  Art is gainfully employed and works hard to provide for us.  My neck pain is gone and I'm feeling so much better than I was this time last year.  The kids are doing well in school, both of them almost fully acclimated to the American school system.

We are incredibly blessed and we are in awe of what God has done in our lives.

I had a very intense week of screening for the upcoming clinical trial.  I drove a total of 408 miles; spent 12.5 hours driving in mists, heavy rain, sunshine and extremely heavy traffic (due to public transit problems, more cars on the road); spent 21 hours in the hospital over four days; crossed two picket lines; had 14 vials of blood drawn; had a full body bone scan,  chest/abdominal/pelvic CT scans; a neck x-ray; an EKG and an ECHO heart test.  I met lots of people. 

In short?  My body is doing quite well!  The scans show no new activity and the bone scan reveals areas of strong healing.  Still a lot of activity in my spine.  There is no cancer activity anywhere else in my body.  My heart is strong, my blood pressure is great.  I am fully classified as "stable."  PRAISE GOD!  Because I have been off treatment for a month, there was concern that the cancer would have a significant increase.

A slightly negative note revealed that I'm still having problems with my fasting glucose levels.  They have been bouncing around for the past six months and I've been trying to control them through proper eating.  They're improving, but this week's tests also showed high cholesterol, so I finally have the motivation to resume a solid exercise program.  There's no sense pushing this cancer back without taking care of the rest of me!  I'm now back to going to the gym with Art.

However, neither the glucose levels nor the cholesterol numbers were red flags to the clinical trials team.  I am fully and unconditionally approved for the study and I will begin treatments on Monday! 

The clinical trial is combining an established drug with a trial drug.  It is considered to be a targeted therapy going in a new direction for cancer treatment.  While this is a Phase 1 study drug, there have been no indications that it has a negative effect on the patient, or that the trial drug interferes with the success of the established drug.  This study is in its third year, although UCSF has only just joined it two months ago.  It looks very promising, so we are praying this is the tool God will use. 

The established drug is given via injection and the trial drug is a daily oral drug.

I will be away from home quite a bit during the first two months of treatment, but then it will settle down to just two or three days a month after that.  We are asking for prayer for our family as we navigate the upheaval this will bring to our schedules.  So far, the kids have been very understanding.

Michael's soccer team has advanced to tournament "finals" on Dec. 7-8.  Rachel went to her middle school Thanksgiving dance.  They are both enjoying church events.  All of us will be participating in an upcoming Turkey Trot (5K) on Thanksgiving morning.  I'll walk ... they'll run!

I saw this plaque in the hospital gift shop:  "If you want to feel rich, count your blessings."

I am one of the wealthiest women on earth!

(NOTE:  The picture is from Dave Hovey's 50th birthday party!)
S
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Let's get this party started!

11/13/2013

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First of all ... my new main photo!  Art participated in a glass-making class as part of a work event and he made a paperweight for me with my favorite colors!  I love the swirl and the vibrancy that was so obvious in the morning sunlight.  I am absolutely thrilled with it.

I got the final approval today for the upcoming clinical trial! Woo hoo!  There are many things to be grateful for and many things to continue to remember in prayer.

Praise:  My emotions are much more even-keeled these days and my energy levels are HUGE!  I can't believe how good I feel and all praise to God for that.  I'm still a puzzle to the medical team because of my lack of pain.

Praise:  My biopsy samples arrived from Hong Kong in less than a week!  I won't go into detail, but let's just say it took a lot of working the phones to make that happen.

Praise:  I've been accepted into the study and all involved are optimistic that this will work to shove my cancer back and to control it.

Prayer:  Lots of details go into a clinical trial.  Here's the scoop:

Monday, Nov 18 -- Meet with neurosurgeon
Tuesday, Nov 19 -- Lab work, bone scan, CT scan
Wednesday, Nov 20 -- Eye exam, bone strengthening shot, cardiology testing.  Special request ... there will be a one-day strike by medical support staff at this location on this date.  It could end up being a very long day.

Monday, Nov 25 -- Lab work, go over all test results, finalize paperwork
Tuesday, Nov 26 -- TREATMENT DAY 1 --  I'll be at the clinic 10 - 12 hours
Wednesday, Nov 27 -- TREATMENT DAY 2 -- I'll be at the clinic roughly 6 hours

The first two months of the trial, I will spend lengthy time in the clinic for 7 - 9 treatment days of each treatment cycle.  I will never need to spend a night unless there is a medical need for it.

Prayer:  I ask for special grace for Art and the kids as we juggle these first two months in the midst of a holiday season.  Side effects are expected to be minimal, but there is no true predictor as to what impact will be felt.

I don't know if the photo can be read, but it says this:  "Life need not be easy to be joyful.  Joy is not the absence of trouble, but the presence of Christ." -- William Vanderhoven

The troubles aren't over ... there are no guarantees.  The cancer is getting worse and our prayers are that this is the tool that God uses to facilitate a complete healing.

I continue to ask for prayers for those who are also dealing with Stage IV cancers with limited (if any) options. 

Thank you for walking this road with us.
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Mud, clinical trials and more!

11/6/2013

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I had the start of a long, detailed update going and then I decided that brief is better!  Starting over!

I've been accepted into the clinical trial that combines an established drug with a study drug that may or may not increase the efficacy of the established drug.  Lab studies are showing that it does, but lab studies often differ from real life.

I will start the treatment the Monday or Tuesday before Thanksgiving, after I complete the four-week washout period (no treatment) and after I complete everything needed for screening.  We are not anticipating any problems with any of the screening as I've been under constant medical care and have had many of the tests before. 

I will have to spend a lot of time in San Francisco during the first two cycles (Days 1, 2, 8, 9, 15, 28) of the study (28 days each) and then it will taper down to two or three times a cycle.

I am excited to be participating in this study and am very hopeful that this is the tool that God uses to stabilize the cancer and to even cause it to regress.

I continue to feel well with no physical complaints.  In fact, now that I'm off the last treatment and finished the "detox" process, my emotions have leveled out and I'm feeling more "normal" ... whatever that may mean!

Last weekend, I drove down to southern California to participate in a Dirty Girl 5K Mud Run (obstacle course), along with six other women from an online support group we belong to.  We've been through so much together as all of us were diagnosed with breast cancer in 2012.  Our team was featured to be a part of the public relations and three of us joined in an interview with ABC7 Los Angeles.  The clip aired on October 30 and can be found here:  http://abclocal.go.com/kabc/story?section=news/food_coach&id=9307136

Life is messy.  We encounter obstacles all the time.  Sometimes, the best thing is to go around the obstacles, but other times, the only choice is to go over them.  We're not meant or designed to do this alone.  God never intended us to live in isolation.

I had such a fun time being goofy at the Mud Run!  I would like to invite you to join me in another one to be held in the San Francisco area on March 22, 2014.  You can register here:  http://godirtygirl.com/mud-run/event/Northern-CA-California-2014/69

If you register, please choose the 9:45 a.m. wave and choose "No Sister Left Behind" as your team.  My goal is to have 50 women to be a part of this team.  If you have had or currently have breast cancer, you can register for free.  Otherwise, the cost is a non-refundable $75, with incremental increases in price as it gets closer to the actual day.

You do NOT have to be in shape to participate in this event!  You do NOT have to run in this event!  You only have to be able to walk 5K (3.1 miles).  It's a non-timed event.

(Dirty Girl is a for profit organization.  They do make a $250,000 donation to a charitable organization, Bright Pink, regardless of how many registrants participate in their races.)

While the Mud Run is fun and messy, it shows how you have to get down in the trenches with people in order to fully experience what they are going through.  It's a good metaphor for life.

I'm still in the book of Numbers in my Bible writing project.  I really need to move a bit quicker as I'd like to be done with the law books before the end of the year.

Remembering others ... Michelle, Bryant, Ann ... all of whom are making big decisions regarding future treatments and are experiencing worsening disease.

May God have mercy on us all.
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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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