We Have a Plan of Action

Sorry that the poll did not work well yesterday, but I'm glad I didn't order an entire roll of these stickers.

When Larry and I left Dr. N's office today we did not have a plan.  Instead we had more indecision from the Tumor Board.  They were still on the fence and because they met at Olive Garden this week the janitor didn't bother to attend (he's gluten free) and therefore there was no deciding vote.  Just kidding about the attendance of the janitor.  The Tumor Board really was still on the fence,said it was 'patient choice' and they meet via web conference call.

Based on that indecision Dr. N had called two additional docs and was considering taking my case to the city-wide tumor board.  We left with the plan that he would hear back from these last two docs and call me and let me know their opinion.

The indecision by the numbers:
Out of 100 women with same size tumor, no node activity, estrogen receptor positive, histologic grade 2, only further radiation treatment:

• 80% are alive and without cancer in 10 years
• 17% relapse
• 3% die of other causes

If you look only at the 17% who relapse if they went through additional treatments:

• Hormone therapy alone (forced menopause to get rid of the estrogen source feeding any microscopic cancer cells floating around) helped 7 more women
• Chemo alone helped 10 more women
• Combined helped 13 more women

That 7 to 13% benefit is a 50% improvement on eliminating the relapse.  Yes, it's a percent of a percent, but that very circumstance made me laugh.  Tim B, if you were reading I know you would be laughing too.  

But really that 50% improvement of chances was already swaying me to a decision.  I mean what self respecting over-achiever would ever want to score in the 80's when they could go the extra mile and get an "A".

We left, still in undecided mode, but stopped downstairs to talk amongst ourselves when Dr. N called back and we went back upstairs to hear what he had learned in the subsequent 10 minutes.  A doc had reviewed my case and because of two factors she recommended chemo.

1. The tumor was multi-focal (the seeds of the strawberry).
2. There was lympho-vascular involvement in the tumor.

Neither of those two factors were considered in the numbers above, which are riskier.  So we have a decision.  I feel fine about it.  I just want to get started so I can get finished.

Next Steps:

• Next week I will need to go to 'Chemo Training'.  I have no idea what that might entail.  
• I also need to get a copy of my heart echo tests, he wanted to order new ones, and I quickly stopped him and said wait I just had that done less than two months ago.  
• I will also need to get the port-a-cath installed.  I suppose that's better than a port-a-potty.  

The chemo plan will be 4 total treatments at the lowest dose.  Have a treatment, wait three weeks, have another treatment, wait three weeks, etc. until four treatments are completed.

J was instantly wondering if I would lose my hair, doc says yes.  Oh man, you're going to look weird.  :)

THEN, start radiation.  Only one torture at a time. No further details about that yet.

Answered Prayers:

• I am so thankful that there is so much data available for a person like me to use for analysis
• That so many have been praying for me
• That treatment options are available
• I feel great physically and emotionally
• That the genetic tests showed that nothing cancer related (that they tested for) passed down to C, S, J, c and e
• We have a plan of action

Prayer Requests:

• God would be glorified
• I would be cancer free
• Appointments next week would be easily coordinated
• That I wouldn't feel too sickly when treatments start

I'm gettin my boots on.  

Will I need...

Will I need...

When Negative is a Big Positive

Today I learned that I am not related to these guys.

Praise God.

The results of the genetic testing came back negative, which is a good thing.  It means that I don't have the mutated gene and therefore I am not exceptionally predisposed to three other kinds of cancer.

The last few days I've been as nervous as a cat in a room full of rockers, not sure how this test result would come out.  I have appreciated your prayers of support for those of you who have asked.

Next appointment is tomorrow (no, I couldn't have two appointments in the same day due to insurance so I get to drive back to Austin again), where I hope we will finally have the results of the Tumor Board and a plan of ACTION.

The options so far are
Radiation or
Chemo+ Radiation

Not sure if this link will work to take a poll.

More tomorrow!

Dr. N Update

Today was the long awaited visit with Dr. N. I was expecting some definitive plans of ACTION about what treatment plan I’d be getting started with.  However, that is not the case.

Turns out I’m in a gray area for what happens next. Ugh.  Ok... 

We already knew that radiation was on my horizon and treatment plan, but because of today’s revelation Dr. N has said that he is really on the fence about whether or not I should also do some chemo. 

Why you ask, because the tumor had multifocal spots (those were the seeds on the strawberry, click here if that makes no sense), inside those individual spots/seeds the cancer was in the lympho-vascular system of the tumor itself. 

Yes, you remember correctly that the larger lymph system is not involved (negative sentinel node), but within the tumor itself it was in that lymph system, which means a few bad cells could have snuck out.

So how do you make a good decision on this topic?  You take it to the Tumor Board.  Who knew there was such a thing; not me.  I've recently contributed to a work project that went to the Board of Directors and they heeded our advice, but I’m not sure I’m as well qualified to weigh in on this topic. 

Apparently Dr. N will present my case history to six oncologists, a handful of radiologists, a handful of surgeons, and the janitor (just kidding on that one).  They will go through all of the details and then they will vote on whether chemo is recommended or not; majority rules.

My goal remains unchanged, to be cancer free, so if chemo is needed, I’ll sign up.  Dr. N said that he would recommend four treatments each three weeks apart (over the course of 9 weeks).  Larry asked if this would make my hair fall out, and yes it will.  I think I will cancel my haircut next week and wait and see what the Board decision is before I spend any extra money on coiffing my locks. 

Dr. N also ordered the oncodx typing of the tumor.  Both L and I thought that Dr. A had already done that, but Dr. N called him right there and no, he hadn't.  So that means that we’ll have to wait two weeks to have those tumor slides from the lumpectomy tested. 

The on-co-d-x is genetic testing on the tumor itself to see how receptive the tumor would be to chemo. A score of >18 = chemo for sure. <18 it’s more of a toss-up (those are my words). 

I've been doing pretty well keeping my mind off the waiting.  Sissy reminded me this evening that patience is a virtue, but let’s get on with it. Amen, Sissy. 

While I’m sharing I’ll also tell you how I’m really doing… I did have a bit of a freak out moment on Saturday at a graduation party, it wasn't the graduate, but the casual conversation among party guests. One of their mutual friends has cancer and has the positive gene and sure enough it’s currently popping out all over her body. I got really antsy after that and left the party not long after.

Then I was reminded that God already knows how all of this is going to work out. The genetic testing that I’m having done will not be a surprise to Him.  He was there when I was knitted in my mother’s womb.  He knows EXACTLY how I am put together, and whether or not I have a gene mutation or not. So I’m back to feeling ‘normal’ and not freaked out. 

The summer bible study that started Monday on 1 & 2 Thessalonians is going to be fabulous; Linda this is what I was going to tell you.  

Matt does a great job of keeping me busy, by our mutual agreement, so that I don’t think too much about all of this crazy stuff.  However, by Wednesday afternoon I had reached my personal capacity for the week (I can’t remember the last time that happened, but it was crystal clear yesterday). I did get everything completed that needed to be done for the week and so I could take a couple of days off, and keep things on track with the project I’m working on. 

Today J and I are off to visit c & e and their parents Janet and Clayton in their new house with a YARD, so I’ll get a few days of rest and relaxation, though Clayton did tell me he’s been saving some of his honey-do’s for when I’m there so I don’t get bored. 

Next steps:

• 6/18  (Happy Birthday Garrrr) Genetic read out; previously scheduled
• 6/19  Tumor Board read out and perhaps a plan of ACTION???? Let’s get this show on the road already.

Answered Prayers:

• Based on several people’s feedback to me, God has been glorified
• Healing from surgery (I’m back to exercise walking at regular distances and speeds and gardening aka weeding)

Prayer Requests:

• God would continue to be glorified
• The Tumor Board would have wisdom and discernment in making their decisions
• That I would be well enough to make it through the full nine weeks of Bible study
• I would be cancer free

A Word on Prayer

Check out how nicely the prayer quilt is coming along:

Today I've asked Clayton to be a guest blogger on the topic of prayer. I think simply, so I was thinking he would walk us through the acrostic PRAY (Praise, Repent, Ask, Yield), but he's way more educated and complex than that. Since he has all that professional training and almost one whole year of experience now, I knew you guys would like to hear/read what he has to say too; of course I might be just a little biased, I'm a proud momma after all. Take it away C:

Andrea, my mother, has made a it a clear goal of hers throughout this cancer process that God be praised from beginning to end.  She has also asked that we continually pray.  The discipline of prayer is holy and faithful way to praise God and care for the whole Christian Church. (Side note: to satisfy my own conscience, I must tell you what follows is a distillation of a paper I wrote in seminary about this topic.  To read a Google doc of that paper click here)  

Prayer is the constant activity of the baptized.  You talk regularly with your immediate family sharing your fears, wishes and desires so that you might be supported and assisted along the way.  In baptism you have been brought, by the working of the Holy Spirit, into the family of God.  St. Paul tells us in Romans 8 that we are children of God, which in turn makes us co-inheritors with Christ.  Jesus spoke regularly with the Father through prayer most notable in the Garden of Gethsemane on Maundy Thursday.  If Jesus then, the perfect Son of God, submitted himself in prayer, how much more should we then submit ourselves in prayer?  

Through regular times of prayer we remind ourselves of a few things: 1.We have a Father in heaven that is greater than any earthly father we may or may not have had.  2.  Our Father in heaven listens to our prayers and indeed wants to hear our prayers. 3. There is great comfort in knowing that the divine creator and savior of the world is continually desiring to hear from you.  

The difficulty then comes in determining the way in which one should pray.  A person could spend a lifetime determining the best way to pray.  Admittedly the Roman Catholic tradition has a plethora of materials for spiritual direction, as the practice of prayer is often referred. Just Google, Ignatius of Loyola or Henri Nouwen to get a taste of what is out there.  And to be fair Protestants have a history of writing about prayer as well.  I will recommend Martin Luther’s “A Simple Way to Pray” written to his barber, and Henri Nouwen’s “Spiritual Direction”.

Here is what I have found, through my own reading and Spiritual Direction with an Ursuline Nun, to be the tenets of prayer.  Praying is foreign to your sinful nature – every bit of your sinful nature wants you to do anything else except pray.  The disciples at the Garden of Gethsemane are an example of this (Jesus said to them, “The spirit is willing but the flesh is weak”).  

Praying can be compared to any other skill – you have to start somewhere.  You can’t sew a quilt, shoot a basketball, run a marathon, fly a plane unless you begin at the beginning – sew a stitch, hold the ball, take the first step, take a lesson – you get the idea.  You can’t pray like the pope the first time you try.  Prayer takes guidance.  The disciples even asked for a lesson from Jesus, “Lord teach us to pray.”  

Be consistent in your prayer time. If you have a hard time making things fit in the morning then don’t make your dedicated time be in the morning.  If you are contemplating bed before the six o’clock news is over then don’t make you dedicated time be in the evening.  Whenever it is be consistent.  Start small and increase your time in dedicated prayer – fifteen minutes one week, then twenty the next.  

Now comes what to say.  One of my favorite Luther quotes, I am a Lutheran pastor after all, goes along the lines of “when you pray, grab hold of a promise of God and hold it in his face.”  That is to say, when you pray, the words that you can use are the words already given to us by God himself.  He promised to give you what you need to eat and wear (Matt. 6) remind him of that, thank him for house and home, food and clothes.  He has given his commandments.  Pray for forgiveness for not keeping them and strength to keep them in the time to come.  Christ has promised to come again in glory to judge the living and the dead: Pray that he would come and you would be counted among the living for the sake of the innocent, bitter suffering of our Lord Jesus Christ.  If you are really struggling for words to pray, pray as he taught us, “Our Father who art in heaven…”

There is more to be said for different and creative ways of praying and recording your prayers.  The main task of the baptized believer is to discipline the sinful nature and approach the throne of grace with confidence on account of Jesus Christ who intercedes for us.  For the Christian praying is the heartbeat of faith.   

Finally

Finally, I received the call we've all been waiting for.  Dr. A called this afternoon, and apologized for it taking so long.

If I didn't know any better I'd say it was Friday, because good things happen on Fridays.

The margins were close, but negative, meaning that the tumor had grown close to the outer edges of the section they removed last week.  (Answered Prayer)

The lymph nodes are not involved.  (Answered Prayer)

Praise be to God!  He is merciful!!!!

The fact that the margins were close prompted Dr. A to give me further explanation.  Yes, I was taking notes, but they weren't all making sense and I think he sensed I was not understanding so he continued to dumb it down for me.

Then he hit on a winning combination... It is as if the tissue we removed last week was like a bundt cake and there was a single 8.5 mm strawberry in the cake (the cancer) and on that strawberry there were seven seeds (7 foci that were invasive), and the strawberry was not touching the edges, but it was close (hence the clean margins).  Talk to me in terms of cake and apparently I can understand that explanation.

After I gave Larry the news, I called Dr. Laura and she was dancing a jig as I gave her the news.  It took a few hours for it all to sink in for me.

Next steps: 

• Follow up appt with Dr. A tomorrow afternoon.  He said he would explain things again (for the remedial patient I apparently am) and draw pictures and provide me with a copy of the lab report (available upon request for any of you medical types out there that would like a scanned copy :)).   
• Will likely have whole breast radiation, because of the 7 foci  
• Chemo is TBD based on appt with Dr. N
• Continue to heal from surgery last week
• June 5th appt with Dr. N
• Meet with a Radiological Oncologist

After we dropped J off to warm up for his baseball game we went to get gas in the truck.  As we drove through town Larry asked if I'd like to stop at DQ for a celebratory blizzard.  After a few minutes, I said

Yes, and they had confetti cake!!!  

Not sure I'm fully back on sugar, but tonight it sure did taste sweet.  For those of you who have taken the no sugar vow with me, feel free to have a celebratory day as well!

Not Yet...

You've waited somewhat patiently all weekend, Monday has come and gone by the time most of you are reading this so I know you're expecting more news.

Well, I still don't have any news.

This time the nurse called me, Monday around lunch, to say that she did not have the pathology report back.  I asked if I should be concerned by that and she replied that it was breast cancer and they were running all their protocols, getting good stains, etc.

Her reply was so smooth that I didn't even catch that she never answered my question until I was dashing off a quick note with that update.  Karen was quick to reply to my note that we at least have confirmation that it is breast cancer, which made me laugh (a good thing).

Kay shared a great quote from Elizabeth (Zab) Palmberg while I was writing this: "Did you know that the median wait time for biopsy results is all eternity?"   Sure feels like that today, even though knowing doesn't change the timing of the next steps (that was my personal reminder).

Apparently the stress level is getting to me today; be glad you weren't over for a visit Monday evening.  Seems I've not been particularly pleasant to be around (and I came home early today too because my arm hurt); oops.  I made a personal attitude adjustment so hopefully things will go better for the remaining few hours I'm awake tonight.

I have received some wonderful cards and one today made me laugh out loud.  This one just appealed to my organized/project manager/list maker side.  How can a Gantt chart with milestone stars not make you feel good???

And, look how the whole door is filling up so nicely! Y'all are an awesome support.  Thank you!!!

If you've mailed a regular greeting card, I've taken some artistic license and done some cutting down and posted your wonderfully encouraging words on the back and added it to the collection, but feel free to keep doing the 3x5 cards too.

I'll sign off with this picture and verse:
The heavens declare the glory of God (Psalm 19:1)