O'Hare & Sahune

Our new home is beginning to remind me of O'Hare during my working days: somewhere to change planes -- or ambulances -- on my way from one place to another -- or one hospital or another -- waving to my very own bed from afar as I charge through the terminal.

Actually, I get to sleep in my own bed in Sahune; it's the constant movement that's getting to me.

I am reduced to using ambulances instead of taxis because I can no longer sit, only recline. I sure hope the surgeon is going to check this first catheter while putting in the others. Our friend, Stephane, whom I constantly feel compelled to say we've known since he was 10, is driving me. At least I don't have to feel embarrassed with him. He's spent a lot of time as a patient in ambulances as well as driver. Bad back.

So, went to hospital for chemo today. For the first time, I had a conversation with one of the nurses. Wish I'd thought of something to say before; she's very informative.

The reason I couldn't stay overnight is that the Gastro-Entrowhatever (Stomachology) unit is set up, but, for budget reasons is not yet staffed full-time. Today it was being used by another department and there were no Gastro beds.

She also explained the catheter procedure. Very interesting, if not terribly reassuring.

And here's the chemo deal. Evidently I was getting carbo-platine-taxol in the beginning. Now I'm getting carbo-platine-taxol one week, carbo-taxol twice and starting the cycle, again. Platine is too hard on the system to be given every week. I have more faith in the nurses than the doctors.

Since Stephane rolled me into the hospital on the gantry, I got a bed immediately. I later shared the room with a guy who also had a catheter. If they wanted us to make friends, the shouldn't have pulled the curtain between us.

Stephane is picking me up at 2:30 tomorrow, so I can check into the hospital at 4. Not sure when I'll be home, so this will be the last post for a couple of days.

The Wonders of Modern Medicine

How come I spent 3 days in the hospital for the catheter I'm currently wearing -- inserted without anaesthetic -- and I'll only be there for one day for the catheters in my kidneys -- which requires anaesthesia? Modern medicine is such a mystery.

Monday is chemo.
Tuesday is catheters.
This morning I had blood and urine samples taken. You'd think the urine would be easier to collect with a catheter, wouldn't you? Modern medicine is such. . .

After the blood-letting (I had 3 prescriptions), I went to see our former GP and put myself back on her list. She says that once they sort out my kidneys, I'll be less tired. If I sit, I sleep. Today I missed two visits from neighbours and 2 phone calls.

But not the one from our friends, Ann & Mike. Ann feels that we should be eating at their house regularly, once a week. Nick said to tell them we already are.

Week-End Retreat

As you know, I've taken to carrying a packed bag with me any time I'm likely to get near a doctor. Friday was to be the start of my new chemo routine. Same drugs as the original -- carbo-taxol -- but every week as opposed to every three weeks.

Thursday night we went to dinner at friends and my urethra completely blocked. (Nothing to do with Marcia's lovely dinner, I'm sure.) I kept thinking it would unblock, but it didn't and, by the time we got to the hospital, I hadn't emptied my bladder for about 15 hours. Chemo got shoved aside while I got a new catheter. And a room.

A few highlights:

• Argument with night staff over whether I had pain or not, resulting in calling Nick to come get me at 10 PM.
• Re-arrival in hospital at 8 AM. "Why did you leave?" asked the doctor. "The nurses insisted I had no pain and I was more comfortable at home."
• End of arguments about pain.
• Since I had bypassed Admissions and didn't have my own TV, my neighbour (or a private room) was kind enough to let me watch cartoons with her.
• Screaming match with another nurse whose temperament, I decided, was not suited to nursing. Later, I discovered she's an intern. She'll be perfect as a doctor.
• To be fair, once we straightened out who knows what, the staff were lovely.
• 2 sonars and a scan.
• Chemo -- at long last, chemo! -- Monday evening in the privacy of my room. I vaguely recall someone calling to me in the night, but the nurse decided to just let me sleep with the catheter attached. I was so grateful. They're very good about letting you sleep.
  
• A move from Surgery to Medical. Surgery has air-conditioning, but Medical have very effective fans. So we bought one on the way home.
• One of the orderlys, practicing his English as he wheeled me back and forth, wanted to know if I was going back up to Stomachology.

I got out yesterday, Tuesday. I slept today. The urologist telephoned. I have an appointment at 2:30 tomorrow afternoon.

Guess I'll go pack a bag.

What I Did On My Summer Vacation

Not a lot. We went to Dijon for the weekend to visit with a half-gathering of the family. St. Jean de Losne, really.

We ate, we lay under the trees and read (I was too relaxed to take pictures), visited the local book exchange (I came home with about 15), and had a puppy visit.

The dogs didn't want to come home and neither did we.

Awwwww. . . friends and hats -- and family

So yesterday afternoon, in anticipation of no hair, again, I went hat shopping on a great site sent to me by a friend's mother. (Thank you, Rena.) Didn't buy anything, yet, though. I tend to wish list until I have a burning desire to spend money.

Virtue is rewarded. This morning, what do you think arrived in the mail? Is this super or is this not super? All the way from Michigan. Thank you, Courtney!

I shall wear it to Dijon tomorrow. We're going up for the weekend to visit Nick's sister and a small gathering of the family.

New Deal

A few zillion phone calls later, I have a new program.

It's back to carboplatine-taxol, but this time once a week. More effective, I'm told. Three months of chemo and then another scan.

It ought to be interesting. They can give me an injection to keep my neutrophiles (some kind of white cell) up, but what to do about my platelets seems a bit up in the air. Evidently, my continuing loss is not the norm.

So: First appointment Friday, 21 August, unless the new specialist gets it moved forward.

I've found my old specialist. She's in Lyon, not far from my new one, he tells me.

Time to start hat shopping, again.

Had We But World Enough and Time

We don't, so here's the recap:

In the last 10 days we have visited hospitals and clinics in Carpentras, Orange, Avignon and Lyon, and two different GPs. How's that for a tour? All within about an hour of us, except Lyon, which is two and a half hours.

I have run into a stream of doctors who cannot understand how I arrived in their offices without papers, letters of recommendations, hospital records or, barely, appointments. And who sometimes seem more worried about my undocumented status than about me. I can understand that, now that I'm calmed down, but I finally told the urologist that I was more concerned about my own problems than his.

He took it like a man. Admitted me to the hospital, inserted a catheter for my evacuation problems, kept me three days, removed the catheter and sent me home. Meanwhile, he successfully obtained my hospital records, a letter from the oncologist I'd seen at Avignon, sent copies of everything to Lyon and talked to the oncologist there.

As soon as I'm up to snuff, he'll get a fawning thank you letter. My new GP, however, is history.

Visit yesterday in Lyon. Everyone at Léon Bréard was wonderful, kind and charming. By the time we were in the oncologist's office, my scans were being dumped into their computers by a nurse whose sole duty is for that. He got on the phone with a surgeon and they twirled my pictures around the computer while discussing my case. He was kind. Attentive.

The surgeon says maybe they'll operate, but they'll try chemo first to reduce the tumours, again. The ovarian specialist is returning Monday and they'll have a meeting to decide how to procede. After two treatments, I'll have another scan to assess progress.

I'll have treatment locally (in spite of my lack of enthusiasm for Montélimar), but Lyon will be in charge of me.

Bottom Line: The tumours are huge, but no other mestastesis except in the peritoneum where it's always been. Most of my blood counts are good. My CA-125 is 6,672. Who knew it could go so high without death?

I've been in bed for most of the week until yesterday. Now I am no longer in pain from the catheter and it's removal and no longer have symptoms of sciatica. I guess the pressure on the nerves has advanced to the point where I'm not feeling pain. Can't walk very well, either, but I prefer no pain.

To think that a month ago, I was painting shutters and contemplating jogging.

Oh, yeah, one more thing. You know those big girl panties you're supposed to put on and deal with it? I have the whole assortment.

TENA Pants

Click to enlarge

TENA Pants

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Quick update by Nick

On the visit to the urologist in Orange he admitted Margot to hospital immediately for an operation Friday morning to insert catheters between the kidneys and the bladder. The problem is that the tumours are squeezing and blocking the passage between these organs. The good news was that the cancer had not spread to the kidneys as we had feared.

The operation was successful although difficult because of the severely constricted passage ways. Margot is recovering in Hospital and although she is not very comfortable feels slightly better because of the action taken. Everyone aggrees that the visit to the specialist in Lyon next week is the next essential step as something has to be done about the growth of the tumours that are causing many problems.

This is just a quick update and I am sure Margot will post all the background details when she is home again which should be in a day or so.

Thank you again for all the messages of support.