20 August 2013

A Rose by Any Other Name Would Still...Be Cancer!

Tomorrow it will be two weeks since my surgery.  I feel like I lost two weeks of my life.  Probably because I am on pretty heavy narcotic medication to deal with the pain.  Some days it's hard to remember my own name.

The surgery went well - according to Dr. Lee.  They found a whole lot more cancer than was evident by the scans.  There were several other large tumors (but not quite as big as the 7-8 cm tumor that started all this).  Dr. Lee said that it was just a mess in there, everything entangled and connected together by cancer that was spreading throughout my abdomen.  The goal of this surgery was to try to remove all visible evidence of the cancer.  Don't leave anything larger than 1 cm.  They know they can't get ALL of the cancer. This is what is called optimal debulking.  Since the peritoneal cavity is filled with both lymphatic fluid and blood supply, it is impossible to know what cancer cells are still NOT visible.  Based on this definition, the surgery was a success.

Because of that "tangled mess" and because they found a tumor on my ovary as well, it made the initial diagnosis of Primary Peritoneal Cancer (PPC) a little ambiguous.  You see, the condition of PPC is that there is NO disease on the ovary.  Therefore, it was necessary to have a thorough pathology report done to find the origin of the cancer.  In other words, "where did the first errant cancer cell start?"  Did it start in the Peritoneal Lining and spread to the ovary, or vise versa? So, we had to wait for the report for the final answer.

It's difficult to remember the first few days.  I was under pretty intense sedation.  I had a "walking epidural" so the pain wasn't too terrible for those first few days.  But, when they took me off the epidural the real pain began.  I can't even imagine what the pain would have been like if I had only been on oral medication from the very beginning.

What I DO remember is all the interruptions. And people trying to have conversations with me with my brain in a fog.  I hope no one holds me responsible for anything strange I may have said.

This was my first time in a major teaching hospital.  I had 8 babies in 5 different hospitals.  In the last 3 years I had 5 surgeries in two different hospitals.  But, I guess they would all be considered private hospitals.

I do not intend to demean the Duke Health System, but this was the most horrible hospital experience of my life.  First, the food was just awful.  Not just like the joke about hospital food, but truly what they gave me was inedible.  Because of the bowel resection, for the first several days I was on all clear liquids (jello, broth clear juice).  Then I was bumped up to soft foods. (pudding, mashed potatoes, cream soup)

When I was upgraded to a "normal" diet, I was on a diabetic diet, so I did not get the regular food that other patients had.  It was filled with chemicals to offset the absence of sugar and salt.  It had no flavor and the 'meats' were so dry, I couldn't even chew them up and swallow them.  I was starving.  And because they kept such a close watch on my blood sugars, and they controlled the insulin, I couldn't even have Doug or Catherine sneak contraband into the room to help me.

Then, part of it was just because there were SO MANY people coming into my room day and night interrupting my rest. There was really no opportunity to nap during the day because every 30-40 minutes someone came to my room to attend to me.  These are the different types of people or "teams" that would come to my room daily, and some of them came 4 times a day.

        • one person - blood pressure, pulse and temperature and O2 as needed 6 times/day
        • one person - to take my blood sugar, 4 times/day
        • one person - to bring me my "food", 3 times/day
        • the nurse - to check on pain levels, give pain meds, to check my oxygen and to administer insulin, total of 8 - 10 times/day
        • the senior oncology resident, 1 a day
        • the entire gyn/oncology team of residents 1 a day
        • a 2nd year resident, 1-2 times/day
        • the diabetes team, 1 every-other-day
        • the Pain management doctor, 1 every-other-day
        • the social worker, 1 every-other-day
        • phlebotomy, to draw blood at first daily, then every-other-day
I'm just tired all over again writing about it.

Then, there were the nurses and assistants that were mean to me.  Like I said, I don't remember much from the first few days.  But, evidently, I annoyed someone enough to start telling the others on shift changes that I was a difficult patient.  There are only two things that I think could have possibly started this, but they certainly weren't me being uncooperative.  Number 1, I have terrible veins.  They weren't great my whole life, but after chemo from breast cancer, they are shot.  To add that, since I had radiation on the right breast side and now have issues with lymphedema, I was told in no uncertain terms my my Radiation Oncologist that I can NEVER let anyone put a blood pressure cuff or stick a needle for a blood draw or IV on my right arm, unless it was a life threatening situation.  There was a BIG sign on my door indicating this very important information.

So, the nurse aids would come to take blood pressure, and they would come grab my right arm to start putting a power cuff on it.  I'd stop them, and ask if they had seen the sign on the door. (most hadn't noticed it)  I'd then tell them to use my left ankle, since my left arm had the IV.  This happened over and over and over.  One morning, early, around 7 am, after a long night, the CNA came in.  Doug and I were talking and before I could notice I felt the power cuff on my right arm pumping up.  I was suddenly startled and started urgently crying out "Get it off! Get it off!".  

I asked her if she had read the sign on the door and she replied, "Well, I couldn't remember which arm it was?"  Seriously?  She could have asked.

Then, when it came time to draw blood, I was also protective of my right arm.  They had to have blood to check for my blood clotting levels in order to put the power port in my chest the next morning.  I was told that they would send the best of the best to access a vein.  But, when we met with the Anesthesiologist during pre-op, they agreed that they only get 1 shot and then anesthesia must take over.  Well, let me tell you about how offended these people get at the very idea that you don't think they are "good enough".   Of course, then they try to find a vein and they see what I am talking about.

The last thing is that somehow the nurses early on came under the assumption that I wasn't doing "the work".  You know, getting out of bed, walking around and moving.  No one ever asked me, they just assumed that because they didn't see me parading about in the hall way that I wasn't doing it.  But, three days after surgery, I started having a  little "problem".  With no warning or urges, I just started....pooing!  Laying down, sitting, standing up, didn't' matter.  This was due to the bowel resection.  I had no control at all.  Well, I certainly wasn't going to do my walking around for all to witness my pooing!

I learned about these "reports" about me, when the weekend nurse came in and was being pretty harsh with me.  She said that reports were that I wasn't getting up....etc.  I told her it wasn't true, and about my  poo problem, performed like a monkey for her and proved that I was getting stronger.  We had no problems after that.  On Monday, the weekday nurse came in, same cold treatment, but I quickly showed her what was true.  She ended up being one of my favorite nurses and really was quite my advocate.

I did have this one night nurse who seemed like she was ok with me, but always made me defend my need for additional medication.  The anesthesia docs tell you they want you to ask for medicine, that they don't want you in pain, but that's only if you can get it from the stingy nurses.

I had a miserable day on Tuesday the 13th.  It was day 7 after my surgery. It started with being woken up at 3:15 a.m. by my nurse who came in just to ask if I was all right.  OF COURSE I AM ALL RIGHT!!!  I AM SLEEPING!  Then at 3:50 a.m. Lab came in to draw blood.  Yup, in the middle of the night.  The senior resident came in at 5:50 a.m.  at 6:30 the CNA came in for labs, 7:00 blood sugar, 8:00 a.m. insulin, 8:30 a.m. "food" brought in.  9:15 a.m. oncology team and on and on and on.


I was so exhausted that day, so sleep deprived that I was seeing things.  I mean literally seeing things that were not there.  I was awake, and I would describe to my visitors what I was seeing.

I devised a plan to be able to get the heck out of that hospital.

There were specific milestones I had to meet to be released. Bodily functions on my own. And we all know I had the poo part down quite early in the game.  Up and around, walking and sitting.  Ok, now I will do it in the hallway for all the world to see.  Finally, pain had to be under control.  Hmm.  This was harder.

I was having three kinds of pain.  First, the pain of the incision and the abdominal surgery itself.  Throbbing, aching, deep pain.  Second, Bowel cramping.  The worst you could ever imagine in your whole life.  Unpredictable and sometimes lasting for very long periods of time. Last, lower back pain.  Remember that herniated disc I have been dealing with since May?  Well, it turns out my entire surgery was done with my legs in stirrups.  Do I need to explain more?  I had terrible nerve pain.

The medicine might help one kind of pain, but not the other.  It was miserable.

But, I decided that when they would ask about my pain levels I would tell them it was lower than what it really was so that I could show improvement.  Yes.  I lied!

By Thursday, day 9, when the Senior resident came in the wee morning and asked how I was doing, I said "I'm ready to go home".  And said he would make it happen.

To help add to the incentive to get home, a few hours later the gyn/onc team of residents came and told me that my pathology was in.  As it turns out, there is another part of the reproductive anatomy that is also made of epithelial cells:  fallopian tubes.  So, if you remember me talking about the similarities between ovarian and PPC because they are both composed of epithelial cells, you'll understand when I tell you they determine what type of cancer it is by where the cancer starts.  Well, mine started in a very tiny fallopian tube.  Fallopian Tube Cancer.  Never heard of it?  Yah!  That's because only 3 in 1 million women get it each year.  Yes.  It is even more rare than PPC.  So, it's the same cancer, but with a new name.  Same prognosis.  Same treatment.  Different point of origin.

Oh, and get this.  Of the woman that get this cancer, MOST are women who have never had any children and have had fertility problems.  Hilarious!  Me, the mom of 8 children!

Stage IIIC, just as I expected.  High grade tumor, meaning, the most aggressive.  Dr. Lopez said that this cancer responds well to the chemo regime.  I asked, "does this just keep coming back like PPC?"  He said "Jes" (he's got a lovely latin accent).  "And, we just keep fighting this over and over for the rest of my life?" He said "Jes."



I guess I had this real hope and optimism inside of me that they would come back and say "Psyche! It's a different cancer with a much more favorable outcome."  It made it so real for me.  I really have to do this.

This isn't going away.

The statistics aren't great.  But, they are just numbers.  I have already proved to be in the low side of the odds, in getting the cancer, so why can't I be one who goes through the treatment and then never hears from the cancer again.  Why can't that be me?

It's in the hands of the Lord, now.


Catherine said...

Don't forget the "patient satisfaction" lady who came in & asked how your stay was going & how the staff was treating you RIGHT IN FRONT OF THE NURSE!!!! Umm....?!?! Yeah, I'm not so much a fan of Duke either right now.

kimeann said...

Tears and prayers, Sally! Thanks so much for sharing these details, it helps make it more real to those of us who can't see you. It helps me be able to more specifically pray, and more specifically think what a wonder of a person you are. Sounds like you have got a wonderful support system (outside the hospital)and a faith to get you through. I believe those who have gone before us are near to God and can pray for us as well. So know that your dear friend Frank, who suffered greatly himself will remember you... Keep posting as you can, so we can walk beside you, lifting you up to our God. Love!

grammypammy said...

Oh, Sally. I hope Duke gets a copy of your blog. They seriously need to work on their 'tudes. I pray for you several times a day, you're always on my mind. I wish I could come down and help you, though I know you have myriad people all around you to do everything you need. Take care, brave & courageous lady. Angels attend thee.

Robin said...

thanks for sharing your story. you are in our prayers every day. we love you Sally!

Heather Carter said...

I am so sorry about the problems you experienced at Duke. You are definitely a trooper and an inspiration. Please rest and take good care of yourself. Thinking of you.

Shalyse said...

I am so sorry, Sally. What a horrible experience. I am glad you are home now and that I can come visit you and that you can have real food served from people who love you. Please let me know if I can help with anything. Oh, and I need to stop by for another visit sometime. Miss you!

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