Saturday, January 30, 2010

Tiny Update

Bill went in for his Gemzar drip on Wednesday of this week, but they sent him home. This time, his platelets were too low.

So this coming Wednesday, he should be back to normal and able to receive his Gemzar.

If so, it will be his LAST CHEMOTHERAPY!

What in the world could we ever do to express our affection and gratitude for the nurses at the Seby Jones Cancer Clinic? We are thinking hard. I suppose a whole bunch of bird seed might be a good thing to leave with them.

There's probably no way to truly express the depth of our appreciation for their constant smiles, kindnesses, gentleness, understanding, listening ears, patience and laughter.

But above all, those smiles.

They ALL constantly seem happy! But I mean GENUINELY happy! How does an entire staff end up that way?

Their light shines in the darkness. Experiencing such a thing from the perspective of the recipient is deeply moving, and we are changed.

Friday, January 22, 2010

Bill felt TERRIBLE, but is improving...and almost done with chemo!

Hi all! Thank you for your beautiful replies to the Saint and the Bird post, both in comments and to me privately in emails. One person suggested that it might have been a real angel who brought the birdseed. I'm not arguing. ;) That birdseed blessed not only all the folks here who needed it, but so many people in different parts of the country who read about it. The whole incident just seemed to us to be completely amazing.

Bill is Better!
Bill is finally starting to feel a little better, and we expect him to be a little better every day now. He is FINISHED with Cisplatin! And he only has two more Gemzar drips, and then he is done!

We asked if he might need chemo after the surgery, but his Oncologist in Boone (now, this isn't from his Duke Bladder Dude, but his chemo doctor) says she bets he won't have any more after the surgery.

In what were very encouraging words, she said that as she sees his CT scan and pathology reports from before he started chemo, it was HER impression that his tumor seemed to be growing ALONG the inside of the bladder but not penetrating the wall at all. Therefore, saith she (from her lips to God's ear!), she doesn't think he would get chemo after surgery.

The only hesitancy Bill and I have about being elated by that is that we BOTH sat with the first doctor and looked carefully for a long time at the CT scan photos, and we BOTH clearly saw the tumor penetrating the bladder wall and almost out of the bladder, if not actually out. Yesterday, we even tested each other and independently drew a picture of what we thought we had seen on the CT scan regarding the tumor position. Without looking at each other's drawings until we were both done, we both drew the identical picture of the tumor growing through the wall.

But we are open to a miracle! And if the tumor hasn't penetrated the wall, then it is only a stage 1, which is considered completely curable! Even stage 3 and 4 can be curable. And with Dr. Walther at Duke using the most conservative and pre-emptive strikes for treatment, we feel even more encouraged.

Bill's Worst Reaction Yet to Chemo (but now it's over)
But Bill had his worst reaction yet to the last Cisplatin and only today is beginning to feel better. Turns out the chemo has a layering effect, and by the 4th round, all the previous rounds are still in there working, so you get sickest at the end. He had so many new troubles: stayed within an inch of throwing up, for days, got a sore in his mouth, mucous membranes shut down throughout his body, profusely bleeding sinuses, exhaustion, extreme metal taste, aching, bone pain from Neupogen shots, tooth pain, hip pain, severe insomnia and so forth.

But for every one of those reactions, he had LESS of a reaction than most people! So we actually feel deeply grateful and blessed!

We expect him to feel better every day now, and after the last Gemzar shot, two weeks from now, he will get a full month of rest, and the surgery will be scheduled at Duke.

One of our astonishingly generous and loving friends, called us to say that she had found a friend in Durham who would let me stay with her while I am with Bill for the 12 days after his surgery, instead of me staying at a hotel. But I have terrible issues--no kidding, REALLY bad issues--with worrying about imposing on people, so I had to turn that down, as I would worry so much about imposing that the whole gift would negate itself. [Here are the normal people; here's me.] :)

But now I'm looking to see if Duke has a McDonald's house or something like that for extended stay patients.

Thank you for traveling with us on this rocky road. I plan to keep posting, at least once a week thru the rest of chemo.

OH! And remember this: DURING the surgery, I plan to post constantly that day (it's 8 hours long!), so you will feel like you are in the waiting room with me, if you want, and on each day following surgery, while he is in ICU, I hope to post many times a day, and very frequently throughout the hospital stay, God willing my computer works there.

So don't drift away just yet.

Thank you for your love. It means everything.

Bethie and BillyBob

Friday, January 15, 2010

The Saint and the Birds

Yesterday, as we were getting ready to go to Bill's last drip of Cisplatin (the difficult drug), we heard someone at the door.

Bill went out, and there stood a beautiful woman with a luminous smile.

She had a bag in her hands, and she said, "I read your blog, and I have a gift."

She gave the gift to Bill, along with her love and promise of prayers, and she left.

When we looked inside the paper bag, we found a large container of the very best bird seed. And when we got to the chemo center, Bill went outside the big window and filled all the bird seed containers with the seed and sprinkled the rest on the ground.

When we went inside for his chemo, the nurses were thrilled that he had sprinkled the seed outside. They said it means so much to the patients and to the nurses, too. They thanked him repeatedly, and he and I both thought of the woman who had given us the bird seed.

Then, in what, to the uninitiated, would seem like a coincidence, we once again were told that the chair for Bill would be the window chair.

And as Bill sat there for the rest of the day, sometimes hurting, sometimes worrying, sometimes exhausted, the birds came.

This time, it wasn't only sparrows, but there was a tiny little gold-green finch, and a tiny brown bird with a long beak, and a black-capped chickadee, and an itty bitty blue-gray bird, then a very small crested brown bird.

And then came the best surprise. Cardinals and doves! The cardinals, male and female, ate from the feeders, and the doves were grateful for the seeds on the ground. All afternoon, so many birds came and ate the seeds.

Some of the people who were blessed by this--among the patients receiving cancer chemo yesterday--included: a very tiny woman who loves apple juice and who was telling the nurses how much she loves her pup at home; her big, tall husband who sat beside her faithfully throughout her treatment; a young man who had never gotten chemo before and was afraid; a woman who had no hair and felt completely exhausted that day; a man who looked very white, and was so sick that he couldn't even sit in a chair for his treatment, but had to lie in a special bed; and all the sweet nurses. And that list was just on our side of the room; the other whole side got the same blessings, only we couldn't see who those people were.

Do you sometimes think that these days there aren't saints in the world, who have a special gift for bringing little candles--and seeds--into the darkest places?

Think again.

Wednesday, January 13, 2010

The Boring Joy of Things Going as Expected

As expected, Bill got his Gemzar drip today, with no surprises, no crises, no shocks, no amusing weirdnesses.

Boring and wonderful.

The only new development is that he has swollen glands in his neck and wants to sleep all day and all night, even with no new medications. No fever. Still has lots of blood in his sinuses. Of course we have no idea what all of that adds up to, but I would say that the sleeping thing is a rather big change. He says he could sleep around the clock if allowed. Hmmmmm.

We got the chemo chair by the HUGE window today. Everyone tries to get that chair, and this is the first time we've landed it. The great thing about this chair, besides the fact that it provides a sweeping mountain view, is that there are about 10 little birds that feed just on the outside of the window.

It's practically stupid how heart-happy you can get turning your back on all the plastic bags of poisonous chemicals, and the tubes, and the sickness and sadness, in order to just look through a window and watch little birds.

Thursday, January 7, 2010

Surgery will be in March

We made contact with our revered and beloved Urological Oncologist at Duke University today, the Grande Master Kahuna of Bladders, Dr. Walthers.

Dr. Walthers is on the EXTREME opposite end of the intellectual and professional spectrum from the guy in our last post, Dokter Gomer Pyle, the Ear, Nose, Throat cretin in Boone. Early on in this blog I've listed Dr. Walthers' creds and they really are monumental, so I won't repost them now.

But just to let you know about when Bill's big surgery will be:

On the last day of Bill's 4th and final round of chemo (that's about one month from tomorrow), we then count 30 days, and that's about exactly when the surgery will happen at Duke. It looks like that will be the 2nd week of March, but we won't have the operating room reserved with an exact date until the chemo is finished. That's when the clock starts tickin'.

In other words, he has one more round of chemo starting next week, which round will take a month. Then Dr. W has him wait for 30 days after that round ends so as to rebuild his strength for the surgery. Then the 8 hour operation happens in Durham. Then he's in ICU for a few days, then a couple weeks in the hospital.

Tomorrow he has his last Gemzar drip of round 3. We don't EXPECT any weird developments to prevent that, but one never knows.

Love to you, and I'll be catching up on emails and cards tomorrow, I think. You've all been unbelievably loving to us. We are both basically stunned at how you've all cared about the situation. I'm not kidding.


Bethie Wethie

Tuesday, January 5, 2010

Fellini Movie or Actual Visit to Ear, Nose, Throat "specialist"?

Talk about WEIRD!

Our visit yesterday to the Ear, Nose, Throat alleged-specialist in the tiny Appalachian mountain town of Boone was easily the strangest experience we've had yet with any banjo-playing canoe-paddling type individual calling himself a doctor anywhere in these here parts.

And if that paragraph's description doesn't quite make sense to you, welcome to our world.


So we get referred to this guy, Dr. X (so I don't get sued), by our chemo oncologist, only she suggests three other doctors before this guy. Dr X was last on the list. But since none of the good ones had openings until almost summer, we went with the Dr. that had the first opening, which was like one day later. As in, perhaps has no patients? As in, never go to a doctor who has no patients. As in, there is a reason.

So here's Bill, who in 65 years of life has never ONCE had massive buckets of blood pouring out of his nose with giant gross blood clots. But now he has cancer and is in chemo and this bizarre nose thing starts. Those are the facts to keep in mind.

First, when you go into the building, the sign to the guy's office has one arrow pointing left and one arrow pointing right. Both arrows claiming to tell you how to get to his office which is on the second floor. After studying this paradox, we decide to ignore the sign and just walk upstairs.

You get to the 2nd floor. There are two doors. One says, "Staff only" and the other says NOTHING. So we had to try the door with nothing on it, and we find ourselves in what looks like a doctor waiting room. To see if we are in the right place, we naturally begin looking everywhere to see if this is the office of Dr X, but NOWHERE in the office does it tell you where you are--no doctor name, no listing of specialty, nothing to go on but that it looks kind of like some kind of waiting room.

So we are going to speak to the receptionist, but she is on the phone and acts like she doesn't see us. Ever. Finally, taking a GUESS that this MIGHT be Dr X's office, we sift through things outside the receptionist's glass window and find a sign-in sheet. So we write our names on there.

After waiting a while, I decide I should go to the restroom, as we have lots of errands to do. But there is no restroom. I walk all around the office. No restroom. I look out in the hall. Nope. I sit down again. Suddenly I see a sign that says "Evacuation Route" and Bill and I laugh at the pun in that. So I look at this sign, and I'm good at reading maps, and it shows that if you go to the first floor, there's a bathroom in the corner. I go there but find that it's been walled up or something. No bathroom anywhere.

So I come back to the waiting room. I go to the receptionist window to ask where the bathroom is, but now there is no one sitting there. In fact, there is no one evident in the whole office area. I stand there a long time but there's no one, no movement in back, no sound, no people, the phone isn't ringing, no other patients. Nothing.

So I lean in the window and over to the side, I can see a restroom. But to get to it, I have to go into the patient treatment area, through a door. Well, no one was there to ask, so I just walked in and went in the bathroom.

Ready for the bathroom? Think: truck stop.

Toilet paper all over the floor, an empty toilet paper roll on the wall, an empty hand towel dispenser beside the sink and a gerry-rigged paper towel dispenser nailed up on the wall.


Why this wasn't enough to make us just leave I don't know.

When I come out of the restroom, I assume that Bill has been called into the treatment area because he isn't in the waiting room. I ask where he is and am told, "Somewhere in that direction." So I wander along and finally see him in a room. I take one step into the room to join him and a woman in the room goes, "We're not finished yet! Go out in the hall and sit down!"

Adding a whole new layer of what-the-dickens to the situation.

Finally, we are allowed to (both) enter an exam room where we wait for the doctor.

In comes the doctor.


Okay. Nothing he is wearing would indicate he is a doctor. He's got on this green courduroy sports shirt and blue cotton slacks. No stethoscope. He looks like he just popped in from a nice luncheon somewhere.

Bedside manner? Not happening.

He says his name. No smiles, no chatter, no nothing. He listens to a short version of our story. Doesn't ask about the cancer, about the chemo, about what kind of chemo, about platelets, about anything except, "Are you taking aspirin? That can give you nosebleeds."

Um, what?

Bill goes, "I'm not having nosebleeds. It's blood pouring out of my nose for 3 weeks when I blow it. With clots."

"Clots are good," the doctor says. Bill and I exchange a brief look.

So then, to the best of my recollection, it goes like this. The doctor tips Bill's head back and looks in his nose with one of those regular nose-looking things that every doctor uses. He looks for approximately 4 seconds.

Then he was done. No questions, nothing. He's ready to pronounce his highly-trained specialist scientific findings:

"Dry air. The air gets dry in winter. When you blow your nose, you see blood. Happens to everyone. Maybe quit the aspirin. Buy some Afrin. Squirt it 4 times in each side. Shrinks the blood vessels. Okay, that's it. Any questions?"

I don't know if I was pale from shock or beet red from anger. Bill was pale. He looks at me, and I look back at him. My eyes are wide open as is my mouth. But I know Bill isn't going to complain, so it's up to Mama to get some bidness goin.

"Yes, I have a question," I begin. "Frankly, I am absolutely mystified. You are telling us that this man here, who has cancer, and is going through chemotherapy and has platelet issues, and a host of other issues, is going to get nothing more than this for an answer to why tons of blood and blood clots are suddenly, for the first time ever, gushing out of his nose day and night for three weeks, when in 65 years of life and almost as many dry winters, this has never, ever once happened before? You're telling him it's dry air? Are you considering possible tumors? Chemotherapy issues? Complications of his many medical conditions? And all that's happening is you're glancing into his nose and telling him the air is dry?"

"Well, nose tumors are rare, and I can't rule it out. So if it gets worse, come back. But you can't do anything about dry air except humidifiers. I see this all the time."

"You see people with blood gushing out of their noses day and night for 3 weeks, you see this all the time?"

"Dry air."

Oh man. My heart was pounding. I was so mad. But at this point the doctor--rather should I say "doctor"--dropped all eye contact and stopped talking, so we all exited the room in a very unpleasant silence.

When we got to the car, we could only vaguely mumble things like, "Did that just happen?" and "Are we in a Fellini movie" and "WHAT???????"

So there you have it. And I'm sure Medicare will get a hefty bill for this fine medical specialist's subtly nuanced professional investigation.

While we now know officially nothing about Bill's nose problem.

But we do know something about how to choose specialists in tiny mountain towns.

When you hear banjos, paddle faster.

Saturday, January 2, 2010

Tiny Update

Bill had one night without blood (the night after he got the platelets).

But today, the bleeding has returned.

Of course we thought that maybe the platelets that he received fixed (raised) his platelet count and in that way, fixed the bleeding in his nose. Low platelet count and bleeding are related.

But that can't be, because all during the time that he got the Neupogen shots--which made his platelets go really, really high--he still had the extreme bleeding.

Leaving me to wonder if the person who gave the platelets had something else in their blood that would have given him some kind of protection for one night.

Monday, we see the specialist about his nose.

Then, Friday he gets more Gemzar if his blood work shows he is able to tolerate it.

We called the Doctor at Duke to get an appointment for his surgery, but they haven't called back yet.

(Bill just now said to tell you that he is really happy that the Gators and Badgers won their respective bowl games yesterday. Only Bill would say "respective bowl games," so you know I didn't make that up.)