26 July 2013

The Good News and the Bad News....Oh wait! There is no good news.

DISCLAIMER:  I may be describing things that might be too much for those who don't want all the "gory" details.  This blog is among other things a way to inform as well a tell about my personal experience.

On Monday, my dearest friend, Patti Maxwell accompanied me to Duke for my 1st of this week's appointments.  The appointment was scheduled for 1:00 p.m.  We waited f-o-r-e-v-e-r!  I got into a room around 2:15, met with the Gyn/Onc Fellow around 3:00 p.m. and finally met with the Gynecologic Oncolygist (Gyn/Onc) named Dr. Paula Lee around 4:00 p.m.

I was in the room all alone for most of the time.  My phone had died, so I didn't even have Facebook or HGTV shows to keep me from going crazy.  I kept going out into the hall and NO ONE was around.  I have to admit, I was feeling a lot of anxiety.  OK. It was more like a small panic attack.  So, I walked around the hallways and found the nurses station and told them that it had been about an hour since I saw the fellow and just wanted to know what the hold up was.  They mumbled to each other. I went back to my room, and waited some more.  Finally, I went back to the nurses station asking them to find my friend and have her come back to the room with me.  I guess I wasn't making sense to them, because they kept talking to me like you would imagine a cop would, talking someone off a ledge.  I know they thought I was nuts!

They escorted Patti to the exam room and we waiting a while longer.  Finally, Dr. Lee with the Fellow and a nurse came into the room.  I rehearsed my story from the previous two weeks and then Dr. Lee performed a pelvic exam.   It was quite painful.  

She told me that she could see a stream of liquid from a small perforation in the vaginal wall.  As she examined me further, putting more pressure on the tumor, Patti said there was a fountain of liquid draining from my body.  Dr. Lee had to urgently ask the nurse for a trash can so that there wouldn't be a flooded mess on the floor.

She also decided to attempt to take a tissue sample from that area.  It was HOLY COW painful.  And the first attempt did not yield a large enough sample, so she had to try again.  OUCH!  

I was a bit confused by the whole thing, perhaps feeling a little optimistic like maybe the mass wasn't really a tumor but just filled with fluid.

Not so much.

When I inquired as such, Dr. Lee said that Benign Tumors and Cysts do not erode tissue.  And that is exactly what this malignant tumor was doing to my vagina.  It was eating away at it.  The fluid that has been constantly draining from my body for over two weeks now is actually coming from the tumor itself.

She did tell me that if the tissue sample was sufficient enough that I might not have to have the fine needle biopsy on Friday.  That would be nice.

Dr. Lee had a wonderful calming presence about her.  I liked her a lot.  We left the Cancer Center shortly after 5:00 p.m.  Both Patti and I had to cancel teaching our music lessons (her violin, my piano) for the afternoon.

On Wednesday, I had three scans scheduled.  A Bone Scan, a CT Scan and a PET Scan.  I arrived at 9:30 a.m. to get an injection of a radioactive isotope so that anything suspicious would show up during the Bone Scan.  This had to be administered 2 hours before the Bone Scan.  However, they were running really late.  (Shock) So I didn't get the injection until almost 10:30.  

Fortunately, my daughter Catherine and my daughter-in-law Kristin met me at the Cancer Center to keep me company.  It was going to be a really long day. And it was.  I was so thankful for them, because the time went faster because I was not alone.

So, we waited until 12:30 for the time of the Bone Scan.  That was OK.  I have become used to being placed in small white tubes and laying perfectly still for 25 or more minutes.

When that was done, the nurse then prepped me for the CT and the PET scan.  This time I was injected with another radioactive solution, that required me waiting another hour for it to get in my bloodstream for the scan.

This scan took longer, because they do the CT and PET scans back to back.  For the CT, partway through, they inject a contrast fluid into the IV that spreads quickly through your torso.  It feels like they lit a fire and sent it through your vein and body parts.  It's not painful, but it is SUCH a weird feeling.  It's my third time having a CT, so I knew what to expect.

I was all done with the scans by 3:05 p.m. and we were now on our way home.  Thank heaven for the Triangle Freeway (which technically should not be called a "free" way since it is really a toll road).

I got home in time to teach my piano lessons and then vegetated for the rest of the evening.  I think all the junk they inject into my veins made me feel really sick and groggy.

On Thursday, afternoon I received a call from Dr. Lee.  She had the results from all my scans and from the tissue biopsy she took on Monday.

She informed me that the cancer cells in the sample did not match the cancer cells from my prior breast cancer, but that they were "like" ovarian cancer cells. 

She told me that I have a rare cancer called Primary Peritoneal Cancer.   She went on to explain.  It is a lot like Ovarian Cancer, because the cellular makeup of the epithelial layer of ovaries is exactly the same as the cellular makeup in the lining of the Peritoneal Membrane.  FYI, this is the sac that your lower abdominal organs float around in.  So, on a pathology slide, it looks like Ovarian Cancer, but my ovaries are not actually involved or diseased at all.  Due to the identical nature of the cells, the chemotherapy treatment is the same as what is used for Ovarian Cancer patients.

They found additional carcinogenic nodules along the side of part of my colon as well as some malignant lymph nodes.  But, all contained in the peritonium.  Immediate surgery would be the first part of the treatment plan.

She kept telling me how hard this was to do over the phone and wanted to see me ASAP.  So we made an appointment for 10:00 a.m. the next morning.

This morning, I met with Dr. Lee to get the rest of the story.  The first line of defense is to do a very BIG (these were her words) surgery.  I was overwhelmed when she told me what the surgery would entail.

  • a very long vertical incision from my sternum to my pelvis, called a Laparotomy.
  • removal of all visible evidence of cancer, called "debulking".  She said that there very likely could be more cancer than the scans could detect.  Seeing is always more accurate.
  • the removal of all my reproductive organs - ovaries, fallopian tubes, uterus and cervix
  • the dissecting of the top part of the vagina, where the tumor had eroded the tissue and the surrounding areas.
  • removal of part of my colon with a bowel resection.  They have to removed the parts of the colon affected by the carcinogenic nodules as well as any part of the colon that was touching the tumor.  99% of the time they can put the two ends back together again, but there is a chance that they might have to do a colostomy and that I might have a "temporary" colostomy bag.
  • I would hospitalized from 10 days to two weeks for initial recovery, and then 6 more weeks of recovery at home, with limited activity.

Then she told me that they would start Chemotherapy four weeks after the surgery.  Depending on the extent of cancer that she finds I could receive the chemo in either of these two ways.

  • traditional delivery  - intravenous infusion, or
  • Hyperthemeric Intraperitoneal perioperative chemotherapy (HIPEC) - this is where a catheter is left in your abdomen after your surgery so that a chemotherapy solution, that is heated to about 107 F is flushed through the abdominal cavity.
She will not know if I am a candidate for HIPEC until she sees the extent of the spread of the cancer.

Dr. Lee would not even consider giving me Staging information or Prognosis until after the surgery.  There is just still too much that is unknown.

To say that I was overwhelmed is now an understatement.   I cried.  I cried, a lot!  

I am in a bit of disbelief,  because I don't feel sick.  I feel perfectly normal, sans the vaginal drainage.  I can't tell that there is a terrible disease stomping through my abdomen.  But, in 11 days, I am going to have a terribly invasive surgery that will alter this feeling of well-being.

I can tell you from my reading that the prognosis is not very favorable.  The problem is that the cancer is very aggressive and keeps coming back.  They treat it again and then you go in remission for a few months, until it returns again.  And that keeps happening....until.

I will post a few links below so that if you are interested you can read about this cancer what it is like for those who suffer from it.

I'm going to be honest.  It's not a pretty picture. Survival averages beyond 5 years is pretty low.  

But those are just AVERAGES.  And we all know, I am NO average girl!!!!!  In one study, there was a woman who was still alive and kicking for 20 more years.

It is completely against the odds that I even got this cancer.  Only 2,000-10,000 (depending on the year) woman are diagnosed with Primary Peritoneal Cancer in the US each year, compared to more than 300,000 woman diagnosed with some type of of Breast Cancer in the US each year.  There are over 150 million women in the US.  So, I guess I am going to be the one who will go against the odds.

Last night, I woke up a lot.  Like I said, in the dark, all alone it's more difficult to not keep thinking about the "what ifs".  I prayed to Father in Heaven.  I told him that there was still so much I needed to do here and that I wanted to stay here.  I am not going without a fight.  And those who know us, have first-hand knowledge that we Plautz' really know how to fight.

I decided that it must be time for the Plautz family to participate in a miracle.  I invite you all to join us through faith in the Savior, Jesus Christ and in our Heavenly Father, and through fasting and prayer.

When I started this BLOG in 2009, I called it The Power of Love, because I learned very quickly how much power love has in the healing process.  Once again, my friends have come to my rescue with love and service to help with the preparations for my son's wedding reception in one week.  I am again overwhelmed by the kindness that is shown to me.  I have no idea what I have done to deserve such love and support, but I am incredibly grateful.

Right now, I trying to just live in the moment.  I don't want to take anything for granted.  After we met with Dr. Lee this morning, we drove to Christian and Mary's and picked up Max, Maggie and Lucy and brought them to our house to continue on with our "Grammie Friday".  It is difficult to do anything but laugh and smile when you are around those sweet children.

You know,  I kept thinking that if, for some reason, they would find that this was not metastatic breast cancer it would be a much better diagnosis.  Turns out, door number 2 is not any better than door number 1.

Links for more information on PPC

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?