21 July 2013

Is this really happening?

I always thought that I would come back and write about what happened after the last post about the Komen 5K Walk back in 2010.  There was a lot to write about.  Lots of pain, physical therapy, pain clinics, new medications and three incredible surgeries and three more Komen 5K's.  I really thought THAT would be what would bring me back to my blog.

Turns out.... you'll have to wait for all that.

From a Tuesday to a Friday

Exactly two weeks ago, with no associated symptoms, I suddenly began to have a lot of blood tinged fluid depart from my body from places that had not shed a drop or dribble since after my first chemo treatment back in October of 2009.  It was like your water breaking, over and over for days and days.

Due to the place from which said fluid originated, the next day I called my OBGYN office and left a message for the nurse.  A few hours later she told me to come into the office ASAP.  Already, that didn't sound good!

I saw Dr. George Toskey, who incidentally, was the first doctor I ever met at Capital Area - OBGYN I had not had my first OB appointment yet with my pregnancy when I began to miscarry late in my 1st trimester.  He was the doctor I saw that day, on February 14, 1994.  He was incredibly compassionate and I have always remembered him that way.

He had me tell about my symptom.  Then he examined me.  It was the most painful pelvic exam I have ever had.  He was really quiet through the whole thing.  Finally, he looked up at me, and said, "Sally, you have a very large mass impinging into the vaginal wall.  I could hardly even examine your cervix, because it is blocking the canal."

He asked me to get dressed and then meet him in his office.  He asked a lot more questions, that unfortunately did not lead to understanding this mass anymore.  His first worry was that it was related to colon cancer.  In fact, he was so solemn, it made ME worried.  When I just happened to mention that I had had a clean colonoscopy just three months prior, he brightened up and heaved a sigh of relief, because THAT is what he was worried about the most.  He set up and appointment the next day for an ultrasound scan.

The ultrasound scan really only told what the mass wasn't.  It wasn't a cyst.  It wasn't on an ovary and it wasn't in my uterus.  It was just wedged in the area called the "posterier cul-de-sac" in woman's anatomy.  Look it up, because I am not going to describe it to you here! :)

So, he ordered an MRI with and without contrast which I had the next morning.

He called me within 4 hours with the results.  He conveyed the findings from the radiology report.  It confirmed that the mass was a tumor that was malignant, and that it was suspicious for metastatic disease, most likely a recurrence of my breast cancer.   Dr. Toskey and radiologist did not believe this had anything to do with any type of reproductive organ cancer.  He said he would send the radiology report to my breast oncologist, Dr. Kimberly Blackwell at Duke University Hospital Cancer Center, and said "make an appointment as soon as possible."

I just sat on the couch in a stupor.  It was really surreal.  I think I couldn't grasp ahold of the idea because I couldn't see it or even feel it.  I had no evidence that it was really there, with the exception of the constant leaking from "below".  Dr. Toskey confirmed that the "leaking" wouldn't stop until this thing was cut out of me.

It was a "Grammie Friday", which means I had Max and Maggie and Lucy over all day, like every Friday.  Doug was home because Wake Tech goes to summer schedule and a four day workweek until school resumes in August.  He could understand the gist of what Dr. Toskey said based on my replies.  He sat down on the couch and said with a stunned look on his face, "I NEVER thought this would ever happen!"

I started to cry softly.

It would have been a totally solemn day, except that my adorable grandchildren bring such joy to me.  I kept thinking that there is so much joy in my life.  Wonderful children!  The most amazing grandchildren.  More grandchildren coming.  Mark getting married to Ashley! SO much to be JOYFUL over, that I just didn't let it stop me from being in the moment.  Enjoying the present.  And not, going to the "dark places" in my mind.  It was a great blessing to have those sweet babes here on this day.

Doug and I kept this to ourselves for several hours.  I wasn't ready to call my children.  I didn't want to tell the story again and again.  But, finally, I made the calls.  NO ONE expected this.

no one

One week after this all started

I got an appointment with Dr. Blackwell on Wednesday, July 17th.  This is also my son, Christian's 30th birthday.  Doug came with me to Duke for this appointment.

Let me just share a little something about my oncologist:

You may or may not know that TIME magazine does a feature in the April issue each year about the "100 Most Influential People in the World".   She's on it.

Dr. Kimberly Blackwell is ON THAT LIST, this year.  It's true.  Look it up.  That's MY oncologist.

Just sayin'.

Now, I have to say that we have actually only met with Dr. Blackwell once over the last three years.  Just the first appointment when I transferred from Cancer Centers of NC to Duke.  After that, I have always been seen by her PA, Erin Duff, and once her nurse practitioner. (that was when Erin was in labor the day of my appointment).  Dr. Blackwell probably doesn't remember me at all.  What Doug and I remember is that she is a "to the point" and not very expressive kind of woman.  Doug's goal was to get her to smile...once.

After I reviewed the events of my life over the past week, she talked to us about the report.  She said she wasn't convinced that this tumor was metastatic breast cancer.  That it could be another kind of metastatic cancer.  She told us the tumor was in the "weirdest place" for a breast cancer metastasis.  Doug asked how unusual.  She said it was in the top 5 most unusual places for breast cancer to recur.

But, she wasn't' willing to absolutely rule it out.  So, she ordered several appointments and procedures for me to attend once we got back from Virginia for Mark and Ashley's wedding.  An appointment with a Gynecological Oncologist, so that she could see and feel what Dr. Toskey experienced, a PET scan and a Bone Scan, to see if anything else is brewing in my body and a Fine Needle Biopsy, to extract cells to definitively determine what kind of cancer cells this thing has.

So, the thing about the biopsy was that the system there would not allow her to schedule the biopsy until they had my MRI scan images from Wake Radiology to show there was something to biopsy.  Dr. Blackwell thought this was going to be the challenge.  I told her I was committed to getting them to her by hand delivering them the next morning on our way up to Virginia.

As she was leaving the room Doug said something about her being one of the top 100 most influential people in the world.  She SMILED and said, "Well, let's just see how influential I really am, if they will let me schedule the biopsy!"

He did it.  He made her smile.  As only Douglas can.

We spent another hour with a nice lady named Dale, who schedules appointments.  She really should be called an appointment engineer.  It took a long time to get the departments to answer the phone and to call her back to try to make my week's appointments.  Here's what's coming for me:

  • First, Monday the 22nd at 1:00 p.m. the Gynecological Oncologist.  
  • Second, Wednesday the 24th, I will have the PET scan and the Bone Scan starting at 9:30 a.m. and going until about 2:00 p.m.
  • Third, Friday the 26th, 8:15 a.m. a fine needle biopsy, with sedation.  Ahh!
  • Fourth, Monday the 29th, 12:30 p.m. a return visit to Dr. Blackwell to receive results.

It's overwhelming.  How am I supposed to get everything ready for the wedding reception if I am spending my days at Duke and then getting home in time to teach piano lessons?  Well, the answer to that is easy.  Good Friends.  So many friends have offered to help prepare the food for the reception.  I am so blessed with wonderful people who care.  More on that later.

So, here I go.  You know, I feel so different this time.  I don't know if I can explain the feeling that since I know how awful the treatments can be that I am not as scared, because I have learned just how tough I am.  But at the same time, I have great fear of the unknown, because this word METASTATIC is frightening.  It means that whatever kind of cancer I have, it is not curable, just treatable.

How will this episode of cancer affect my life expectancy? I probably shouldn't go there, but in the quiet of the night I wake up and think about it.

If you were a fly on the wall, you would never know that I have learned this horrible news.  I don't act any different.  I'm still a pretty cheerful person going about the responsibilities that I have.  I laugh and joke.  I smile and keep moving.

I really hope that I can keep doing that.

But seriously, is this really happening.....again?


Anonymous said...

I am speechless my friend. this was not supposed to happen, right?
My prayers are with you Sally, praying for good results on monday.
None of us know when our end is to be, I pray that yours in a very long way off.
love you much, Ramona

grammypammy said...

Just as you've always done, you will KEEP MOVING FORWARD. You are an incredibly talented, hard-working, focused individual who has blessed more lives than could accurately be counted. I am thankful to know you, to have learned from you, and to count you as a cherished friend. The Lord has big plans for you, Sally (who doesn't know this, doesn't know Sally) And I know you'll be up to them, wherever they lead you. I am grateful you are being proactive, that you are in the hands of capable doctors, and that you have a family who love you, not just in words, but also in actions. Love, Pam

Anonymous said...

There are so many things I would say here..but there are only 3 you need to hear... KEEP THE FAITH. And I know you will! The strong fiesty lil thing i met 37 (yikes!) years ago has a long long time to go. Keep kickin..keep fightin... keep the faith...
Kristi Fandrei-Rogers

Anonymous said...

Hugs, Sally. Many hugs. Christy

Anonymous said...

I know bad things happen to good people, but I'm so sorry this is happening to you!! You are definitely in our thoughts and prayers!!
Nancy Pyne

Angela said...

I'm was so sorry to hear that cancer has once again reared it's ugly head. Krissy told me last week. Devastating news, I'm sure. I'm a firm believer in the power of the mind. We don't know what the Lord has in store for you, but your positive and loving attitude will help you in so many ways. Laugh as much as you can! It's medicine for the soul and much more.

CourtneyMarie said...

My dear Sally, I was devastated to hear about this, but the example you bring to those around you= the LIGHT that shines from you, so so inspiring. Thank you for being so brave. Thank you for being willing to share your burdens. I love you, and you and your family are in my thoughts and prayers :)

Anonymous said...

I am so sorry to hear about what is happening to you now with your health. You have been strong before and will continue to do so. I just know it.

You have great faith in Jesus Christ which will be a beacon in your life at this time. I wil be praying for you.

Lynne Barton

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