The Boogeyman’s Back….(a poem)

The boogeyman lives under my bed –

Sometimes he tries to sneak into my head

I plug my ears and stomp and shout

Trying to tearfully block him out.

He used to be just a scary story

Until the day he arrived in his glory

The news came through the telephone line –

“You have cancer” – now you’re mine.

We drove him back under the bed

Did surgery, chemo, everything they said

Prayed and hoped he would stay hid

But that’s not what this monster did…

Today I got another call

That pushed my back against the wall-

The sucker’s rearing his ugly head

I “need to get checked out more”, they said….

It may be nothing or it may be bad –

Oh man, this news makes me scared and sad!

So here we go for another round

Trying to not flip upside down.

God only knows and He’s not saying

What around this corner is waiting

But my God is bigger than this boogeyman

And I’ve got to trust that I’m in His hands.

3/24/16  Teresa Norman

 

Tuesday was the mammogram, Thursday was the call where they said they need more imaging and a pathologist to sort out what happens next in my life.

What the Heck is A Gynecological Oncologist?

The past nine months, I have gotten to meet a lot of really nice people.  One of this is, Nurse Joanne, my new ally in the fight for sanity/long life/peace.  She called today to let me know my favorite surgeon doesn’t do ovaries, and to see if I would prefer a male or female “gynecological oncologist.”

I am a simple country girl (who happens to love living in the city), and used to be just fine with the days where you went to one doctor when you were sick, got your medication or directions, and got on with life.  This year, I have met radiologists, Pet Scan people, MRI people, Ultrasound people of several types, two very nice oncologists, a radiation oncologist, two surgeons, and now, it appears I am going to be meeting a gynecological oncologist.

What do they do?  I have a misbehaving left ovary that seems to have a 2″ x 3″ complex cyst with some unwelcome characteristics.  It was not misbehaving badly enough to keep me out of the “Catherine Trial” (taking kadcyla as a stage III clinical trial for people who have “a large residual tumor burden” after the pathology report).  But, as the surgeon said earlier, this should not be there in a woman my age and stage of a complicated life.  The ovary has flunked various tests so far (or at least gotten maybe a D)….it has “one septation, a focally thickened enhancing wall, is suspicious for neoplasm and shows very mild enhancement” on the MRI.  Evidently, this means they take it out carefully so it doesn’t rupture and spill little bad cells all over the rest of the area, or they take it out, put it under a microscope and declare it “innocent” like my other breasts.  A gynecological oncologist is thought to have the experience to do this the best and if it turns out to be misbehaving nasty cells, to deal with cleaning up the mess.

Great!  While I had asked Joanne to follow-up on this, I was surprised to feel fear again.

 

Jesus Is A Refugee (poem) reposted

See the  mother on the journey, tiny baby in her arms,
Running from the soldiers who’ve come to rape and kill
She’s tired from the running, desperate, hungry, full of fear—
How can she know God loves her, and that He walks beside her there?

He is there beside her in the dark and in the cold.
He knows what she is feeling, in the Bible it is told
That He was once a refugee. His parents ran to save His life
From the soldiers sent to kill him in Herod’s infanticide.

The way that God has chosen to loose the bands of wickedness
To give bread to the hungry and to help free the oppressed
Calls us to walk beside her in our prayers and in our hearts:
As the body of Christ, the servant king, it makes her burden ours.

But words and prayers are not enough, no matter how well spoken
God’s love requires our presence so He can walk beside His children.
Even though we’re broken, we are His feet and hands.
We stand in need of grace to obey His commands.

Though she sits in darkness, He came to be the light.
Though she now is hungry, He is the bread of life.
Though we turn aside sometimes or don’t know what to do,
We are all called in some way to help her make it through.

He chose to entrust us with His reputation
And to make us His body throughout every nation
As a king become baby, He risked everything
Calling us to embody the love that He brings….

I was hungry and you gave me bread
Thirsty and you gave me drink
A stranger and you took me in
In prison and you came to me….”
Lord, when did this happen?
His answer is quite clear
“When you did it for the least of these
It was for me, for I am there….

Teresa Norman March 2001

 

Life After Treatment

Now that I’m on the clinical trial, I only have 12 more treatments of Kadcyla to go, and then, unless something else goes wrong, I will be done with cancer treatment.  I can’t wait. Since last February 16th (mammogram day), a huge portion of my mental, physical, spiritual energy has been invested in dealing with the new part-time job of trying to recover from cancer and cancer treatment.

Maybe now’s the time to think about how I want the rest of my life to go….what’s important to me….what I gave up that I need to pick up again….how to continue to leave a legacy that will matter to my family, friends, and faith when I’m gone (maybe another 30 years?).

A very wise older friend steered me in the right direction a couple of days ago.  She unknowingly, but gently, reminded me there is a bigger picture to our lives – it’s not just commuting, working, and recovering from commuting and working.

On Being Radiated

I wonder,  if you hooked a radiation oncologist to a lie detector and then asked him these questions, and got these answers, would the machine go nuts?:

  1.  How does radiation affect people?
    1. Oh, you might get a little tired by the end, but it’s way easier than chemo.
  2. Do people have to take time of work?
    1. Most people just sail on through.

I swear the doctor was a liar!  (Or was that just a well-honed marketing pitch?).  Each time they checked my skin to make sure I wasn’t overcooked, he said, “Everything was fine.  You’re right on schedule.  This is how it’s supposed to look…”  There was one day on week five (5 days per week for 33 treatments), where I called in and said, “You say I’m fine, but I’m not fine and I’m not coming today.  I can’t do this.”  That was the one day mental break down I allowed myself to stay home, take pain medication and sleep so I could ignore the fried areas of my well-radiated chest.  Of course, that day I missed was tacked onto the end of the process.  I missed one other day on week 6 because he agreed I would be overcooked, so I got a three day weekend to heal.  It helped.

At the end of the process, final skin check, his nurse said, “I want you to know, Dr. L. is not mean, he was just really scared of your kind of cancer and we want to win.”  Ok.  He’s forgiven.  Big picture.

A week and a half after radiation ended, still applying silvadene cream to open burns the size of a dollar bill, but it has gone WAY down and is starting to hurt way less.

Clinical trial and new oncologist

I’m a little behind on figuring out how to process the events of the last four months (post surgery).  Pre-surgery, treatment for Her2+ Stage IIIB inflammatory breast cancer was going to be the same, no matter where I went.  I received excellent care at Swedish Hospital in Ballard (Seattle), and greatly appreciate the nurses and the ever-special Elisa.  But, for this stage of treatment, there were different possibilities to consider, and they weren’t offered at Swedish in Ballard.

Because of the “residual tumor burden” left over after treatment with Perjeta, Herceptin, and Taxotere, I qualified for the Katherine trial – a clinical trial being done at Swedish on First Hill.  This is a stage III clinical trial of a drug called Kadcyla, which is currently approved to treat metastatic breast cancer, but they want to see if it helps people like me.  This meant getting in with Dr. Erin Ellis, who is a very good communicator, and very thorough, and having infusions of Kadcyla ever three weeks for 14 treatments.

 

When the Dr. is Being Too Nice…

Yesterday was the one week follow-up after surgery.  There was good news and bad news.  First the good news….I got one of my surgical drains removed.  Yay!  That is exciting because that one hurt every time you moved a hose.  The other good news was that the surgical margins (edges around the pieces of me they amputated) were clean – no cancer all the way out to the edge.  This means no more surgery.

But that wasn’t all….out of the 18 lymph nodes they took out, 10 of them still had cancer that had not responded to treatment.  That means my response to the trio of chemo drugs they had used was only partial.  The oncologist will make the final decisions on what happens next, but it looks likely that radiation will be postponed in favor of more chemo with different drugs.  Since radiation just attempts to kill whatever cancer cells are left in the area where surgery was (local treatment) , that becomes a second priority to killing whatever ones may have wandered through the lymph system and set up shop in distant locations and may be preparing to become a metastatic nightmare (systemic treatment).  This may also involve another PET scan or CT scan to see if there are areas of problems in other organs that weren’t big enough to show up when they did the original scan in March but are now.  We have an appointment with the oncologist next week.

Have I mentioned how grateful I was to be done with chemo?  That no matter how anxious I was about the disruption, logistics and potential exhaustion of radiation 5 days a week for six weeks while trying to work full time, I could always comfort myself with “at least you’re done with chemo.”

We were looking at Facebook last night as a way to distract ourselves from the news of the day that we didn’t want to marinate in, and a post from a dear friend who lost his wife to cancer a few months ago was there saying how much he missed her and how relationships are really all that matters in life.  Tears.  Fears.  Hard to keep  emotional distance from that at the moment.

Glad I’m walking through this with an amazing family and some very supportive friends.  But wish we were all walking somewhere else instead of down this road.