Dear Classmates,

It seems, lately, I have been frequently saying, "I don't know" or "I will know more later". So if I find some wisdom I do feel qualified to say, I would like to offer it.

This entry is "how-to" practical advice dedicated to those people my age or "better" who need to catch up on having their colonoscopy. My credentials to offer this advice are that I had my baseline colonoscopy a few years ago, and now am in my second day of "bowel prep" for surgery. First of all, I encourage you to just do it!

Second, I have a short list of essential items that may not have been in your doctor's prep instructions. (They will make your experience more pleasant, or at least less unpleasant.)

1) Charmin Ultra toilet paper. No one is paying me to say this. It is the softest I have found.

2) Water bottle. There is probably an old sports water bottle in your cupboard that still works. It will be comforting to your skin.

Early Morning Thoughts of a Woman Two Days from Her Hysterectomy

Waking
How could I think anything in the middle of the night? But I think I woke up with this question. This November's ultasound report said my uterus measured 13.2 centimeters. Last year it was reported as 7.8 cm. The year before, it was 11 cm. It looked like I was two or three months pregnant. (That is how doctors describe it.) At some point, should we have done something besides Watch?

We always like to think, "We caught it early." I would still like to think so. But now, my oncologist's plan is to also take lymph nodes. Beyond the initial plan. So what if we didn't "catch it early"?

Then I opened up a letter from a friend filled with love and inspiration and hope and faith in God.

Sure, there are questions.

But there are also friends who help to cushion them.

You are the face of God to me.

"..I was hungry and you gave me something to eat,
I was thirsty and you gave me something to drink,
I was a stranger and you invited me in,
I needed clothes and you clothed me,
I was sick and you took care of me,
I was in prison and you came to visit me."
When?
"...Just as you did it to the least of these (my brothers),you did it to me."
Matthew 25:35-36, 40


Did I Just Not See You?
Several years ago, Carrie (my daughter) and I watched a movie called, "Runaway Bride". I thought it would be fluff, and yet, I remember a certain substance. The Julia Roberts character asked the Richard Gere character what happened to his first marriage, and suggested he ask his former wife if he did not know.

"Did I just not see you?" he asked the first-wife character.
"No, you didn't".

How basic. To be seen. To be known, acknowledged, understood, recognized.

This reminds me of John's and my last Sunday in South Africa. Someone at church told us "Thank you for visiting us; you have made us human." That saying is a very gracious way of welcoming a stranger, and affirming the African idea that "People are people by virtue of other people".

As God said to Adam in the beginning, It is not good to be alone. You are not complete.

Sometimes, we think of ourselves as the ones doing the serving. But right now, I am the one in need. Dr. Hakim (gyn) said there is more to this picture of inconclusive test results. I will not let this go. He sent me to Dr. Malviya (oncologist). Dr. Malviya Saw me. And while I was trying to be an uncomplaining woman, he said there is more to this picture, and I want to see more.

I will not let you go. I will hold your hand. I will walk with you. I will carry you. Not their words exactly. But messages I hear from them and loved ones who are the face of Jesus to me.


Besides Questions - Stories

The Mall
Thursday, after being at Dr. Malviya's office for the second time this week, John and I went to the mall on errands (something to wear after surgery). As we walked among the stores and people, I realized it was the first time I had been in a mall since last July in Johannesburg, South Africa. Mm. Good memory together.


Peter Storey
John has been attending a yearly conference for pastors of large churches. This year he did not. However, we both benefited from one of their scheduled speakers, Dr. Peter Storey, former Presiding Bishop of the Methodist Church of Southern Africa. We had seen him and his wife Elizabeth both in Cape Town and in Johannesburg last summer. Tuesday, Peter was flying in by way of Amsterdam, through the Detroit airport, down to Orlando. So John and I drove out to Metro to find him between flights. He is always detained and questioned by Homeland Security when he travels, because he was active in the anti-apartheid movement. But this time, the wait was minimal. We were so glad to have those moments with Peter!

Breakfast
This morning, first thing, I took my thyroid pill, then dutifully waited as usual. By time for breakfast, I was hungry and started to pour myself a bowl of Shredded Wheat. I promptly poured it back, remembering today is my "full liquids diet" day.

Yogurt is good too.

"I'm New"

That's what I said to the receptionist Wednesday, the first time I walked into my oncologist's office.

Today, when John and I walked in to deliver a report (no appointment), Gail, Dr. Malviya's nurse, met us for a consultation. Soon, Dr. Malviya walked in and sat down with us as well.

As it turns out, my surgery date has been moved up to this Monday, January 28. Dr. Malviya explained that, looking at the big picture, he would rather we had surgery now. We know pretty much all we can know before actually going in. The plan, as I understand it, is that Dr. Malviya will perform a "Modified radical hysterectomy", with Dr. Hakim assisting. During surgery, test results will be available from "frozen sections". That is one level of information. Then, after a more complete inspection of the tissue, more answers will be available a few days later.

Will I need radiation or chemotherapy?
Not a question we have an answer to at this point.
I will know more... a few days after surgery.
(Not a complete picture, of course.)

I am very glad to have the schedule moved up to Monday.
I am very thankful for everyone's support, prayers, and offers of help!

And, I know I am in good - excellent - hands!



"For I, the Lord your God, hold your right hand...."
Isaiah 41:13a

When I Know More...

After the biopsy...
After the consultation with Dr. Hakim...
After the lab tests...
After the appointment with Dr. Malviya...
...which was today...

Now, I am waiting for the next step.

I did (happily) learn that last Thursday's CT scan did not show that cancer had spread.
So far, the cancer appears "well-differentiated", which one likes to hear.

Dr. Malviya also had blood work done today.
(Check that off my list.)

Now, he will look at my "slides" and get a more precise understanding.
And he will talk with Dr. Hakim (my gyn).
He may even find an earlier surgery date - which I would love!
No matter how "well-differentiated" that cancer appears, no one wants to leave it there!

So now, I am waiting for someone to call me back with the next step.
(Tomorrow, the next day? Unknown.)
(Not passively waiting. I'm calling tomorrow.)


By the way, as it turns out, there was no time for finishing novels
(or doing homework)
at the oncologist appointment today.
Since I was a new patient, there was not a long wait at all.

"For now we see in a mirror, dimly, but then we will see face to face.
Now I know only in part;
then I will know fully, even as I have been fully known.
And now faith, hope, and love abide...."
I Corinthians 13:12-13a

The Purse

I carry a purse I bought in South Africa this past summer (on John's sabbatical). It was crocheted of (strips of) blue plastic bags and a little colored yarn by a woman who lived in Gugulethu. We met her as we were concluding our "tour" of the township of Gugulethu near Cape Town the first week of our visit. Her little table of beautifully crocheted crafts was set alone near the parked car.

I did not learn her name, and I do not remember her face. But I remember Thando, our guide, quietly telling us that she had HIV/AIDS, and was trying to support herself. Health insurance, I guessed, was not part of the picture.

As for me, I have received regular and extensive diagnostic care - mostly paid for by my husband's health insurance. And now, with this appearance of cancer, I have hope of wellness, with treatment, again, mostly paid for by health insurance.

I know I do not have to go to South Africa for stories of people without insurance. But I carry her story with me.

"More Tests"

Short note: Test results to be reported to me on Wednesday.

Longer note:
I will not necessarily write everyday. We'll see.
But last night was a major event so far: "more tests".
Each one seems to have its own lesson and point to the next step.
November's ultrasound. January's biopsy. Last night's chest x-ray and abdominal/pelvis CT scan (Results to be revealed at Wednesday's appointment with Dr. Malviya.)

Coming: more bloodwork and then February's surgery with real-time biopsies and over-time biopsies.

That's all I "know" so far. So there is no one answer for "How it went". It is a process.

But I will tell you about the tests last night, if you are interested in such things.
I drove to Providence Park for my 7:00 p.m. appointment. Parking was not a problem. I was served three large cups of something that looked and tasted like water, but was a "contrast", the better to see my digestive system. In the meantime, I was taken to the locker room to change, then to the chest x-ray room. One pose facing a metal plate. One facing the side wall. Back to the waiting area to finish my drinks and read my (commercial)Disciple homework(commercial).

After the "contrast" had a chance to find its way through me, I was called to the CT room. I have never had one of these before. The machine looked like a large doughnut-shape, with a moving table on one end of the "hole". I laid down with my feet toward the doughnut hole. I had an IV for more "contrast" that would help them see other organs by the circulatory system. Also, there are special orders for Dr. Malviya's patients: a rectal "contrast". I had to ask her to repeat that. But it makes sense to be able to see as much as possible. So, lying on the table, looking up at her, I said I would do whatever he wanted. Apparently some people argue about that. But I thought, who am I to question the wisdom of this doctor? I am putting my life in his hands. And I thought... of course... Who am I to question God? And my everyday response should be that I will do whatever he wants. I am putting my life in his hands.

More about this machine. There are two Pac-man-type pictures in a light on the doughnut above my head. One has its mouth open. when it is lit up, I breathe. Then a voice says to breathe in. Then it says to hold my breath as the light switches to the other face, the one with its cheeks puffed out that looks like it is holding its breath. There are also countdown numbers that show how long the breath-holding is expected to last. Then the voice says to breathe again. The automated voice and the faces kept me company while the nurse?/tech? person was busy taking the pictures (I think from another room. I could not see.). She kept checking back on me, but it was hard to hear unless she was right next to me (because of the machine noise).

When the "contrast" was shot into my IV, I felt a warm sensation, as she said I would. I specifically remember the palms of my hands feeling warm. This all went away in a few minutes, after the machine whirled away as I moved through the doughnut hole. That warmth was appreciated though, as I could not seem to get warm otherwise. There were signs on the wall, offering warm blankets. Next time I would take them up on it.

I feel a little like I am in a foreign country. Thankfully, I am finding helpful hosts.

Talking with Dr. Hakim, My GYN

About January 15, 2008 Tuesday
John and I sat down with Dr. Hakim on Tuesday, January 15, after Dr. Hakim had consulted with a gyn.-oncologist, to talk about what lies down the road.

Ideally for me, I would like to get this all taken care of now! I led a program for "United Methodist Women" Tuesday night about John's and my sabbatical experience (with John as my able tech assistant). But, other than that, I thought I was ready any time now! I carried my toothbrush and blanket into the appointment Tuesday to try to suggest they could take me NOW! (It was my attempt at a little joke.)

Surgery Schedule
However, after explaining objectively what we know and what we do not know, Dr. Hakim said the surgery is scheduled for February 18. I am pretty at peace at the moment (trying not to feel beyond what I know).

What we do know.
The initial biopsy just checked a few cells he removed from my uterus. That confirmed malignancy. It looked like "Grade 1" or slow-growing endometrial cancer. That is about as simple (good) as it can get. The "standard of care" for endometrial cancer is surgery, a complete hysterectomy. (I had assumed "chemo", but it sounds like that is not assumed unless it is needed (spread).)

What we do not know.
Has it spread and how aggressive it is really? The biopsy examines only sample cells. So we will have a more complete picture with more tests and when they actually do surgery. (When they do surgery is when they actually "stage" it.. decide if it has spread, how much, what treatment is needed...) We have no reason to think it has, but that is their job to be objective. Caring comforting people can say warm kind things like "I KNOW you will be fine." But I very much appreciate my doctor being objective and thorough. That is his job.

More tests
I will have both a chest x-ray and an abdominal CT scan today (Thursday night). Those results are sent both to my gyn and to the gyn oncologist, whom we will see on Wednesday, January 23. I think he will be participating in the surgery, but I am not sure how that all works yet. This is a journey, sometimes one step at a time, sometimes with over-lapping steps. Again, I say, "We will know more" after this appointment next Wednesday.

Dr. Malviya (next Wednesday)
This oncologist is apparently legendary, excellent, dedicated, and well-loved. His receptionist said he is usually "3-4 hours late". I could register and do paper work, then leave and come back. Someone else told me she waited 5 hours. My gyn said expect 8. Another woman said they told her to go home for dinner and they called her about around 1:00 in the morning. This may be a good time for John to bring his computer and get a sermon done.