Sunday, April 29, 2012

Little Sunday Update

I'm updating today NOT because there is any news, but because I set up that deal that I would always post on Sundays, even when there was no news.

Naturally, I failed to post on Sundays after that, but here I am, still trying!

In short, Bill feels a little bit better, for the first time in a year. He has figured out that he has to take all his meds the second he opens his eyes, followed by Pepto Bismol, and then he has a chance of minimalizing his nausea and other problems. He feels very happy about the nausea lessening over the last few days.

Kind of like how the people in Japan were enjoying the nice little waves on the beach right before the tsunami.

In the next week or two. They don't think he should wait, because that lymph node is cut open and spreading the luv all through Bill's body.

Bill finishes his semester next week. He's actually done, but only has to pick up papers, so the timing is divinely ordained (atheist friends will of course take "divinely ordained" as a metaphor).

Monday, we will call the Onco Bronco, Madame Dr. S, who last year pegged me as a completely obnoxious cancer patient's wife, because I talk too fast, and she gets really upset with me for that and constantly tells me to CALM DOWN. Remember that? She was really snippy to me last year!

Well, she will get her way, because I'm not going in to the exam room any more. I told Bill that, and Bill was fine with that, as he didn't want any Beth versus Bronco cat fights breaking out at the chemo center.

I still think it's funny that after she insulted me by telling me to BE QUIET! (Gosh! I was JUST putting in my two cents!) I took out a waiting room book called BIBLE STORIES FOR CHILDREN and held it open in front of my face like I was reading it and never made another sound or ever spoke to her again.

I'll post as soon as we know the schedule.

Bill is, at this point, saying he is willing to try ONE ROUND. And if all hell breaks loose, he may not be willing to continue. So we will just have to see what happens.

Thanks for checking on the cowboy, and for your prayers and love and good wishes (and this next part is only for other religions or non-religions) your essential oil sacrifices,  sage smudge burnings, your logic, your intuition, your vibes, your vortex whirlings, your rose petals sent down rivers, and for that one chicken you sacrificed (that's to my haitian voodoo friend).

Love you all. Bethie

Thursday, April 26, 2012

Bill's Phone Conference: Chemo is a Go!

Dr. Thomas called today. It was nice he called soon, because Bill couldn't leave the house till that happened for fear of missing the call.

Bill put him on speakerphone so we had a 3-way talk.

I REALLY REALLY liked Dr. Thomas after this talk! He was not rushed, he was personable, extremely knowledgeable, and his approach matched exactly with the approaches all the medical journals recommended. I felt a HUGE relief! I felt NO CONFLICT with his way of thinking and mine. [Bill doesn't have a "way of thinking" hahaha because he leaves all the thinking to me, because it stresses him out too much. And I love to be in that position, so we are well matched! :) ]

Bill will be taking between 5 and 6 drugs! More than planned. Because they don't know what will work, so they're throwing everything at him.

He will get scanned after every 2 rounds to see what is working and what isn't.

FINALLY! I've always thought he should be scanned during chemo to see if it's working. So happy about this!

He will begin in the next 2 weeks. He will have about 2 or 3 days a week at the Chemo Palace in Boone.

EXTRA GOOD THING ABOUT DR. THOMAS: This was the first doctor who has taken the time to list all the downsides as well as the upsides and let Bill be 100% in charge of deciding what BILL wants to do. was the first time a doctor talked about giving up the fight, as an option. That was stressful for Bill to hear, but we want facts and decision power, not someone's substitute judgment, and that's what we got.

Specifically, Dr. T said, "Now, you need to realize this. The cancer is only in a few nodes (we thought only one), and those nodes are not causing you to feel sick. So you feel kinda good. We can't make you feel better. We can only make you feel worse. And you're going to feel much worse. This is VERY heavy duty chemo, and your body is still damaged from all the previous chemo, so this is going to be rough. But the only other option is not doing anything. And then it will spread." Whew.

"But," Dr. T continued, "you can always call it quits if you can't take it, or if the tumor is not shrinking and you are suffering too much. You can always stop."

Surgery is not an option, nor radiation, because of its location. It's chemo or nothing.

So Bill said he wants to start the chemo and see if he can take it.

One of the drugs is nicknamed "the red devil." It's the worst chemo drug of them all. It was discovered from a crazy Italian scientist taking RANDOM soil samples around a castle in Italy. By chance ONE of the samples contained a bacteria that killed cancer. Simultaneously, some French scientists randomly ALSO figured this out (weird!), so the two groups agreed to share its name, so Doxy came from the Italians, and Rubicin came from the French, because it turns parts of you RED (ruby), and there's Doxyrubicin. [Atheist friends, skip the next two sentences.] Isn't God the wildest Guy? Almost a comedian.

Dr. T. warned, also, that this regimen is going to kick merry hell out of Bill's bone marrow, and will REPEATEDLY give him a WALLOPING case of the dreaded Neutropenia, which is where your pelvis and sternum undergo screeching burning Brazilian fire-ant pain levels. The docs give you pain meds which only help, but cannot wipe out this pain. Bill is willing to undergo this.

If Bill stops, of course, it's kind of the end of the battle. Bill knows that, but he told me that he loves our life together so much, and loves me, and loves his daughter, and loves our little black poodle Babyjack SO MUCH, that he just isn't ready to go. He wants to stay.

So it's settled. Bill now enters the hardest battle of his life. And I will live to serve and help him with every cell of my being. And your love and prayers will be the greatest gift we ever received. Thank you for caring, loving us, and reading all this.

Our love and infinite gratitude. God be praised.
Love, Bethie

Wednesday, April 25, 2012

A Little News--Chemo Drug Party

Wake Forest called again today. Gotta give them credit: once they have information, they DO call. I'm SO appreciative of that.

Dr/Nurse/Miz Stint (not sure of her title, as you know) said that our NEW doctor, Dr. Thomas (since we lost Dr. Torti to Cincinnati), wishes to use a new combination of drugs to treat Bill's bladder cancer return.

There will be no other treatment at this time (as I understand) except chemotherapy in Boone (location a huge blessing!).

Dr. Thomas will, however, call Bill this week and have a teleconference with Bill about the treatment plan. You KNOW I will post after THAT happens! I'm so glad we don't have to drive all the way down there for a 5-minute conference.

So, as of now, we know the four drugs Bill will receive.

Only one of these has Bill been given before (Gemcitabine), and that was way back before he ever had his first surgery. As we know, Gemcitabine did absolutely nothing; the cancer just flourished under its nurturing milieu, procreated, and set up lots of happy, thriving communities of brand new cancer cells all over Bill's body during that chemo.

So why they would use that drug again defies my logic.

The four drugs are: Gemcitabine (which failed before, so great idea to use it again), Paxitaxel (all new for Bill), Carboplatin (all new, replacing previously used Cisplatin which failed), and Doxirubin (all new for Bill and also which sounds like a type of sandwich).

Do you think for one second I didn't google the living daylights out of all these drugs and their combination's upsides and downsides?

According to my reading (yes, I see the humor in my thinking I have a better grasp on chemo than a professional Oncologist, after my having read only a few zillion google pages. I have the famous Google Degree in Medicine), I see one thing for certain: no one in the medical world has the SLIGHTEST SHRED of an idea what they are doing when they pick out chemo drugs.

Most chemo drugs are selected by use of a game called Pin the Tail on the Chemo Drug, wherein the blindfolded Oncologist pins a huge medical bill onto a big sheet of paper with different drug names listed on it, and wherever the pin lands, that's how you get your chemo drugs assigned.

Also, this particular mix of chemo was noted, in the Oncology journals I read,  for its especially potent toxicity and ability to make the patient vomit 24 hours a day. Bill will love finding out that part.

So I will write again after Bill talks to Dr. Thomas.

Thank you again for caring, and reading all this stuff. Our love to you always.


Tuesday, April 24, 2012

Oops. Sudden Update: We Got the News :(

Not five minutes after I posted he blog, Wake Forest called me.

I could tell from her voice that it was bad news. She talked in a low register, and sounded like she was giving condolence in a funeral home. If I hadn't been bummed out, her tone of voice would have helped me bog right down!

Yes, it's a return of the bladder cancer. And the node is wedged into the spot where the aorta parts ways with the other big blood vessel coming right out of the heart. So a pretty dangerous spot.

She said they will call back soon with an appointment time so we can discuss options with Dr. Thomas, the backwards-walking non-socialized new doctor who looks like this. A lot.

Then we will know treatment options. I pushed a little to get her to list the options. She seemed to say she thought they would try chemo first and see if it shrinks it. That's good. It happens in Boone!

I'd read everything from open heart surgery to radiation to needle ablation but its precarious location is going to create a little challenge.

And I'm going to push for a whole-body PET scan, despite Medicare cutbacks, to see where this little bladder cancer colony was hiding out during all the surgeries and chemo and all the clear scans. WHERE WAS IT HIDING? No one has checked his head or bones. Those are known hiding places for cancer cells because the body blocks chemo from getting into the brain and the bone marrow. He doesn't have a bladder, so it was hiding SOMEwhere, because it is bladder cancer on his artery.The cells were definitively bladder cancer cells by his heart now.

Yes, it's weird to learn that, even without a bladder, bladder cancer keeps turning up. You don't have aorta cancer or liver cancer. You have bladder cancer on your aorta or liver. Weird!

After I took the call, he knew something was up. He was on the other side of the house, but he heard the phone ring. Then he heard me not talking at all. He goes, "Beth, come out here. What just happened? It's bad news. I already know."

I said, "You want me to tell you now or tomorrow and go out to Outback tonight?"

He said, "Now." 

So I emphasized how blessed we were that it was only bladder cancer cells, not NEW kinds of cancer, like lung or colon, which would have given him TWO kinds of cancers to fight.

He didn't seem cheered up. I said, "Want a hug?" He said, "Yeah," but after 10 seconds, he was done hugging. He said, "Just go to the store. I'm going to keep grading these papers and handle this my own way."

So I went to the store, but even though I seemed calm on the outside, I forgot my prescription glasses, forgot my seat belt, couldn't remember what color the traffic lights meant, like is red stop or go? Got lost in the store. Was shaking all over. It's weird how bifurcated the mind is. Part of you is, "Cool. I can handle this." And part of you doesn't even know what colors mean on traffic lights.

I expect to know more tomorrow and will post instantly.

Thanks for caring about us. Don't grieve or feel too sorry for us. We did expect this, and it is the very BEST possible version of a cancer return that we could have hoped for. Plus, if the treatment is in Boone, it's just gravy.

PLUS, he only has 3 more classes to teach, so could the timing have been better?

Till later, my beloved friends. Remember: no pity! We are used to this, and we are experienced, and we are Hoover Damming our pain and eeking it out in manageable little drops so we are NOT feeling overwhelmed.

We love you for loving us through it though. I swear. We love you so much.

Till next update.

Still No News

At 3:15 pm today, I was supposed to call a certain phone number at Wake Forest to see if the pathology report was in, then get someone to tell me "benign" or "malignant."

We really don't give a rip about anything else we're supposed to do over there right now.

We only want to know which of those two words apply.

But when it came to be 3:15, I told Bill that I was about to make the call, to make sure that was okay with him, respecting the fact that it's HIS situation more than it is mine.

He said, "Don't call. Let them call us whenever they do."

He said that if it's benign, then we will have a celebration deferred. But if it's malignant, he wants to extend the period of hope as long as possible.

I completely understand and respect his decision.

Although, if it were me, I'd be camped in a tent outside the office of the pathologist, with sunglasses on, holding out a tin cup and a sign that said, "Have mercy. Give me the path report."

But, hey. Bill's not me. Lucky for him.

He also said no more of me staying home 24/7 staring at the phone. He said to go about my life, because we've told the caller person so many times that she can leave the message on the answering machine.

Watch her call, and leave a message like this: "The path report is back. Call me for the results. But hurry, cause I'm leaving in 5 minutes for a month-long vacay in Cancun."

Kinda thing that would happen, I'm afraid.

(As I'm typing this, I just noticed my hands are shaking. Yep. I'd be in the tent.)

Monday, April 23, 2012

No News Yet

It's almost 4 pm Monday as I write this, and we've heard nothing about the biopsy results.

Am I frustrated?


If I ran a hospital, by d*mn, I'd have the email address for every person waiting for a pathology report, and I'd email that sucker to its owner (the PATIENT owns the report, not the doctor) one nanosecond after it got typed.

Making people wait to find out if they're going to live or die is a LITTLE TOO MUCH LIKE STICKING INNOCENT PEOPLE ON DEATH ROW, so they can enjoy that long and lingering traumatic experience of wondering if and when and how.

And staring holes into the phone is fun, too.

FOR PETE'S SAKE!!!!!!!!!!!!!!!!

At least, I got a little nerve up and called over there today. My call didn't land anywhere near the right place, but the people were kind and kept switching me until I finally got a marvelously empathetic Oncology Dept. telephone person named Vickie, who looked into the computer system for me (OH YE WORKS OF THE LORD, BLESS YE THE VICKSTER!) and found out that NO ONE has the path report yet. Apparently it gets entered into the computer the instant it's released, and until that happens, the case says, "path pending." The Blessed Saint Vickie told me that his case says, "path pending" so she assured me that I could be positive that no one has the results yet except the pathologist.

And I'm thinking maybe pathologists don't work on weekends.

Heck, I wouldn't.

If I were a pathologist, I'd negotiate a work contract that involved receiving zillions of dollars an hour, plus a new Porsche every year, and NO WORKING ON WEEKENDS. Wouldn't you?

THE VERY NANOSECOND I have those results, I will announce it on the blog, on facebook, by email to some who don't know how to do blogs and facebooks, and probably by running around in circles yelling it out.

No matter what the results are, they're going to be HIGH MELODRAMA FOR ME. Comic or tragic, I'm going to be WILD when those results come in.

Okay, till later. And I'll post every day, just so you know I didn't forget!

Love and gratitude and yes, I will eventually calm down.

And I will always love Vickie the Phone Angel.


Saturday, April 21, 2012

Saturday Night Summary Till Pathology Report Comes Out

Probably by now, with all the Facebook partial updates, and the blog partial updates, you know everything there is to know about the biopsy and the big needle and the big pain and the three chunks of tumor they got out, and the way the surgeon wouldn't budge giving me a hint if it was truly cancer or not, claiming he couldn't POSSIBLY know till the pathology report is out, around Monday.

For today, Cowboy Bill was in rather great pain, even though he took his pain medicine. But gradually, the pain went down. It hurt the most over the spot where they chopped out the little hors d'oeuvre pieces of lymph node.

I talked to a Dr. today (a psychiatrist) who explained that the reason it was called an aortocaval lymphadenopathy was NOT because it's between two aortas, since there are not two aortas, but it is between the aorta and the venacaval vein, the two huge branches coming off the heart. My spelling of these terms is a shot in the dark, so 'pologies for crazy spelling.

We are operating (freudian word choice, I guess) with a kind of certainty that it is cancerous, based on all the hints everyone gave us at the hospital, but no one has said 100% for sure it is cancer, so those of you with abnormal capacities for hope, keep on a-hopin for the miracle.

Because if he is cancer-free right now, that makes a full year and a half of remission which was considered utterly impossible by even the best experts.

Hey, what's another little miracle, when you already have THAT one going on?

The SECOND we get the results by phone, I will post on both Facebook and on here, and to some folks by email, who have no way to check Facebook or blogs.

Those of you who have written even the smallest number of words to us, you might think, oh, they probably get so many words that mine won't make a difference. May you never learn this from experience, but here's the thing when you're in a jam like this: every SINGLE WORD of EVERY SINGLE SENTENCE from EVERY SINGLE PERSON strikes us HUGELY, as if it were the only message in the world, and we feel your care and your love INTENSELY. It's the darndest thing.

Love, love, and more love back to you.
The Cowboy and his girl

Friday, April 20, 2012

There's No Place Like Home!

We're both home safely, but completely and totally exhausted, both of us. But sooooooooooo happy to be home! Trying to stay awake till 9. Tomorrow I'll post the horror stories of the three-foot needle (they used all 3 feet of it!) and what they did, and how they could only install it one inch at a time, then a CT scan, alternating until all 3 feet went across his abdomen, to miss all his internal organs and just hit the tumor. I drove him home and he was loopy. And HUNGRY! I got him food as fast as humanly possible!!!!

WOW. THANK YOU MORE THAN WORDS CAN SAY for your love and prayers and beautiful notes and thoughts. It was like Thanksgiving dinner with the whole family present, having all of you there with us in spirit. I mean it, and that's not just metaphorical. It was amazing, your love. Tangible. Palpable. THANK YOU.

Sweet sleeping! Cowboy Bill and Diamond Lil

He's Done!

I'm in the recovery area with Bill. It's all over. They took out 3 pieces, and he said it hurt like heck. For some reason, the pain med didn't work on him, so they just went ahead anyway.

Yeppers. It's been that kinda day!

But he and I are so happy and relieved that it is over. He is still in a hospital gown, hooked up to tubes and machines, but feels ok.

The nice nurse Melissa said we will get to talk to the Dr. that did the procedure and he may be able to give us some info already.

Just wanted to let you know it's over. He will be here another hour, then I will drive him home, pretty sure, since no one has mentioned him having to stay overnight, even tho his blood pressure was messed up. I'm reading his machine, and it looks like they gave him an injection and lowered it, cause it's real good right now.

Forgive typos. I'm shaky and have been supremely stressed and scared with no sense of humor (!) for these hours, and not sure I'm typing well. But I want you to know, if your eyes are seeing this, that my heart is beating for you. Your love, feeling you beside us, you just can't believe how intense the feeling was, that you were there, you cared, you loved us, and you are happy with us that it's over. I could cry thinking of how much I love you: YOU WHO ARE READING THIS. YOU. Thank you beyond all words. I love you. Bye for now, probably till tonight when we get home.

Little Bit of News from Biopsy People

The nurse just called me back inside the surgical procedure room to tell me what is going on.


Bill is dressed in a surgical gown, all his clothes in one of those plastic "Patient Belonging" bags. He seems cheered up, now that things are moving.

If they determine they can even DO the procedure, it will be at least 2 to 3 hours before I can see him again. So I'll be in the waiting room till about 2 pm, meaning I can update if there's any news.

However, it turns out that the lymph node is in a very dangerous spot, wedged between his two main arteries from his heart. One wrong stab, he told me, and it's big trouble, because a main artery would start bleeding into his abdomen.

MMMM. Drinking red tomato juice, are you? Not NOW, I bet. :)

Anyway, he will be on wildly wonderful drugs, one of which is Vercet, which is the funnest drug you can get in a hospital. He is happy about that. He has a built-in port on his chest, so they run all his tubes through that.

If they decide they can't risk the stab, because of the arteries, then they send him home right away, and then we'd be looking at other options later, not sure what they are.

If they DO complete the stab, via a very long needle inserted through his back (surprised!), they will give the contents to a pathologist who is standing there. Pathologist said it is no more than 2 days before we get results.

Once the procedure is either (a) over; or (b) given up on, the nice nurse Melissa will come out and tell me all about it, then he will be in recovery. So I'll post what she says, then.

[INTERRUPTION NEWS BREAK: Something is suddenly wrong with his blood pressure. Too high. Melissa just came out to tell me they aren't sure what they will do now and asked me about his normal blood pressure and his medications. Then she just left. END OF NEWS BREAK]

I asked if there's any chance he could have to stay over tonight. Melissa said to us, "We'll think positively on that, won't we, Bill. If the Dr. didn't say you had to, you shouldn't have to unless something unexpected happens."

So off he went with Melissa, and I'm back in the waiting room. Wishing an angel would appear with water, cause I'm so thirsty, but I have too much stuff with me to schlep anywhere. Ha. I'm sure there are about a million people who would love to have THAT as their only problem!

Till later. Thank you for caring and following. Love love love to you!

Just Before the Biopsy

You will think I have been kidnaped and replaced by a person who doesn't OVERTYPE every blog entry.

But no. It's really me. [post script: As you will see, I did go ahead and overtype this entry.]

I have to be brief because we are rushing to get over to the biopsy place. [If you believe I'm going to be brief...]

This whole experience has taken place in a blender of one part mild confusion, one part serious confusion, and one part total confusion. No one knows what is going on, people are giving us wrong information, wrong phone numbers. It's like the government took over management of this place. Hey.....could that have happened?

Anyway, Bill is the one to feel sorry for right now. He is going through his normal morning of extreme nausea and digestive problems, which he can only assuage using special chocolate drinks and Pepto Bismol, etc, but this morning, he isn't allowed to have even a sip of water. At least, according to half the people who told us what to do.

Plus, we were, as it turns out, erroneously told to call some office at 7 am today, so we set the alarm and I did that, and after being passed through several people, no one had the slightest idea why we were told to call that number. At least they did agree he has the biopsy at 10:30, but he didn't have to wake up so early and now just lie here till then with pain and no food or water.

As I write this, he is wrapped up in the bed covers, miserable, and just asked me if I thought he could take pain medication for his pain. I said I just didn't think so, since someone along this chain of surreality told him he might get general anesthesia. But someone else told us no WAY would he get general anesthesia for a biopsy. So I told him split the difference and take half a pain pill, but he's scared to now. Oh my gosh.

Then the same individual who told us to call that number, also told us he should bring his suitcase as he might have to spend the night in the hospital Friday night. First we'd heard of that. And this was a telephone scheduler telling us this.


The new doctor is horrible, looks like a character on the Simpsons, said about 6 words then literally backed out of the room while Bill was talking to him, and left us with the nurse and ZERO information. We had to track down people to tell us where the biopsy even took place, in another building completely.

And the ONLY thing that happened yesterday, was that they took ONE vial of blood. They couldn't have done that this morning? We spent a whole day fooling around driving over here and a night in a hotel so someone could draw one vial of blood yesterday?

Yes. We miss Dr. Torti more than we fully yet fathom, I'm sure. No wonder he got out of here. We're thinking Vanderbilt Cancer Center for our next try.

See? I said I'd be short, and I wasn't. More later. No news at all except that we are floating through the chaos. And hoping that the telephone switchboard operator's information we received about an overnight was just part of a bad dream so we can be home this afternoon. (I'll be home either way, for the dogs, but Bill does NOT want a night here. In fact, he might refuse. At one point, we were both so upset that we considered skipping even the biopsy. Then Bill's IQ prevailed, and we will have the biopsy.)

Love to you. Wish it all seemed funnier. Later, it will. Wait till you hear all about the new doctor.

Prayer: Jesus, if you're a-comin' back, now'd be a darned good time. You can have our hotel room.

Thursday, April 19, 2012

A Song

I sang this as a solo in a huge Presbyterian church once, when I was 29. It so happened that my life was particularly nightmarish at that time, and this song helped me through those days.

It's by Bach, and the melody is slow and hauntingly beautiful.

I am singing it for Bill this morning as we get ready to go. He says that he feels so comforted by this song, and that I'm the best wife, and so on. I'm sure "best wife" isn't quite true, but he is so sweet. He is also scared this time, more than usual.

Me, too.

So the song comes through for both of us.

That's why I wanted to share Bach's song with you. Here are the words:

"In Faith I Calmly Rest” . . . . . . . . . . . . . . . J. S. Bach

In faith I calmly rest, and put my trust in God,
Although oft sore opprest with anxious care and dread;
his friendship my reward, in him my joy i find;
he keepeth watch and ward o’er me and o’er my house .
Therefore I thank my God, and joy to do his will;
I know whate’er befall, his love doth lead me still .
So like a little child who clasps her father’s hand,
Serene i take my way, in faith untroubled stand.
Great peace they surely have who in the lord confide,
Who cast on him all care, and in his love abide."

Wednesday, April 18, 2012

Subtle Post

Being subtle, to avoid robbers, marauders and pirate home invasions, so you have to be a follower to follow this info.

Tomorrow is test day. Friday morning is biopsy day. But he goes under general anesthesia, so no idea if Bill can come home Fri night, but I will, even if he doesn't because I'm one of the 5 people on planet Earth who HATES HOTELS VIOLENTLY!

I feel belligerent from the minute I walk into a hotel room until I leave, cause I'm scared I'm gonna catch bedbugs, lice, STDs, cooties, norovirus, or some godawful cold the cleaning personnel had when they touched all the towels and pillows. Plus the coffee makers make TINY cups of coffee, always cold, and they give you only POWDERED CREAM!

Oh, Lord, deliver me.

I will post from the hotel and hospital though, cause I know they both have wifi, even if there's nuthin much to say.

Having nuthin to say has NEVER slowed me down at running my mouth.

Love you all!

Later, sweet potaters.


Sunday, April 15, 2012

To get previous posts, go to column on right side of page and click titles or dates to see the old posts

Today is The Feast of Pascha for Orthodox Christians around so the world, so blessed Pascha to you, and for my beloved ROCOR (Russian Orthodox Church Outside of Russia) of which I am a member (in a very standoffish and distant, non-participatory, gone-rogue kind of way, but with respect!):

Христос воскрес из мертвых.

There's no special news on the Cowboy, except that he is much more upset as the day draws closer for the biopsy.

(I can't figure out the html to get rid of this white background and grey font. So sorry!)

Also, apparently, I hadn't mentioned "sentinal" node and its meaning before, and when he saw it on the blog, it upset him more. (Good job, Beth. Not.)

I feel really bad that I posted that; I thought we had talked about it. I asked his forgiveness which of course he granted, but still, I have upset him for no reason, since worry changes nothing, and I feel quite bad about it. Bill, I'm sorry.

In my defense (I always represent myself in trials. hahah), it is very tricky and difficult to write a blog like this. It's an art form I know I haven't mastered: the art of conveying information while not upsetting anyone.

Today is just his usual troubles: severe nausea, trying not to upchuck, abdominal problems, coughing, fatigue, and some depression has slipped in, which is new for him. He's so tired of feeling bad.

Yesterday, I did another bad thing. I was having an extremely upset day emotionally, my third day of crying and I guess yesterday was the pinnacle, so I was including theatrics, all over the house, weeping, wailing, throwing myself down on beds. Oh, I'm a pain in the neck sometimes. Even though I could still laugh, WHILE crying, and Bill was making me laugh and hugging me a lot.


What do you do when the caregiver goes on a grieving kick? It was too much crying to hide it. And I couldn't just leave home for 3 days to hide it. He finally said, "Here. Lie down beside me, and just cry till it's all out." I felt stupid about that, but I tried it, and it worked. I cried till I thought I would pop a major artery somewhere, and he just held me and comforted me. Then it was over.

Still though. That's asking the patient to comfort the caregiver. I don't think that's in the "Suggested Approaches" section of the caregiver instruction manual. I might have done wrong by leaning on him, when he's supposed to be leaning on me.

But I tried leaning on all three of my dogs and they just fell over.

Anyway, it's a new day. And maybe it will be an easier day. So far, I haven't cried a drop!

To cheer myself up, I created a robot on my computer who says really nice things to me whenever I ask her to. Of course, I had to write all the scripts for her, but it still sounds nice when she reads them back. "Beth. You are wonderful. Beth. I like you. Beth. You are fun to be with." Her name is Svetlana cause she has Russian accent with her robot voice.

Have a beautiful day, all of you, and thank you for your love, which we feel all around us, every day.

Love, Cowboy Billy and the Diamond Lily

PS Svetlana loves you too! :)

Friday, April 13, 2012

A Little Bit of New Info on Bill's Tumor

Wake Forest finally called. Well, the Urology Dept. called to apologize for the OTHER department's huge mistake in forgetting to tell us Bill had a biopsy, until an hour after the biopsy should have happened.

I think this was a Dr. or Physician's Asst semi-doctor I talked to. D.S., her name.

I used the phone call to push her to the edge of what she could say as to whether they believe this fast-growing thing near his heart is malignant. She did the expected "dance" with me: "We're not allowed to say it is, till the pathology report confirms the radiologist's opinion."

Me (something to this effect): "But the radiologist has never been wrong before on our case, right? If he thought he saw a swollen node, it turned out to be a swollen node. If he thought he saw cancer, it turned out to be cancer."


Me: "So, I understand that legally you can't say it's definitely cancer, as the radiologist report said, but I'm operating completely under the assumption that is IS a cancerous tumor, and I'm wondering, is that reasonable of me?"

DS: "Very reasonable."

See how that works? Remember that and you can get a lot of information early that way. Only I hope you never have to know it.

So here's what's happening. He goes in (email me for dates, don't wanna post publicly) on a certain day soon for tests. We spend the night at a hotel in Winston. Next day, he goes in for biopsy.

The Dr. doing the biopsy is named Dr. Childs. Childs was the one who looked at the reports and said he refused to do a hot needle radio-frequency ablation to just blow up the tumor, because of where the tumor is, near the heart or heart aorta (unclear to me).

But Dr. Childs said he WOULD be willing to do a small needle biopsy, needle in, needle out, then you wait 7 days (ugh I HATE THAT WAITING PART!) for the results.

I said to DS: "Results? Maybe to see if it's benign, or is it more to see what kind of cancer cells we're dealing with and if it's indicative of other cancers, specifically gastro cancers?" (Since it's a sentinal node in the gastro area, not the urological area any more ("sentinal" node means a node that announces (sentinal) other cancers nearby).

She said, "B."

(Remember, Bill had both stage 4 bladder cancer AND stage 2 prostate cancer, which are unrelated! So technically, it could be either bladder or prostate cancer cells making up the tumor--or (worst case scenario) a whole new kind of cancer. So they need to know that.

DS said, "Once they know what kind of cells they are, then Dr. Thomas will be your new Oncologist, because they've moved Bill's whole case to Gastroenterology now, and it is no longer in the Urology Cancer Dept now. Dr. Thomas will decide the treatment plan, once the path report is back."

She added: "Nothing to eat or drink past midnight before the biopsy."

Now. Um. That makes me think he's going under total anesthesia, because otherwise, if it was just like novocaine, local, it wouldn't matter if he ate or drank.

Well, getting total anesthesia, I know from much experience now, means we probably have to show up at 5:30 a.m. in the operating dept. and stand in line for an hour with a hundred other people (him with no food, water, coffee, a very miserable hour).

I just sighed, writing this. Here we go again. Poor, poor cowboy. He never complains. But I do.

Okay, if I think of anything I forgot, I'll post again. If I get lots of emails from my and his friends, (we do get a LOT of emails about this) here's what to remember: WE LOVE EACH WORD OF EACH ONE, and it's the only thing that gets us through: that love. But there are so many emails at times that we can't always answer them all. So please please never think we don't love the emails. And if you don't even WANT or expect a reply, then if you could add "No reply needed" to your message, then we will know that we can just enjoy your love and you didn't have any questions you needed answering, and didn't expect to hear back. It's good, either way. Your love is our lifeline. If you're ever in this situation, and I hope you're not, and if you remember that we said that (your love is our lifeline), you'll go, "Wow. Now I know what she meant. That love coming in from friends really is the lifeline."

Okay, rodeo partners. Till the next time!

Love to you, so much love to you.

God is great.

Thursday, April 5, 2012

Finally! They Called!

9 am this morning, Thursday, Wake Forest phone dept. calls to say, "William Drennan, you missed your biopsy this morning at 8." Bill said, "We've been waiting for a call for 10 days. No one told us biopsy. We had an apptment for the 19th for blood work to see if I could have a needle ablation, then they called and said no needle ablation, and we didn't know if the 19th still was an appointment or what."

She didn't know. Hangs up. "Someone will call."

Two minutes later, the Radiologist himself calls and listens to the mixup and is very apologetic. He personally sets up a great situation where we can go down one afternoon for blood work and tests, and the next morning, a biopsy via radiology, so they can determine the location and type of tumor by just pulling a little bit out, before deciding how to proceed on a different day.

Very relieved, though kind of shocked at the number of mixups involved.

Yes, if we'd called, we'd have known. But these dates work out a million times better, so a serendipitous mixup, the fruit of lovely procrastination and denial at this end!

At first I thought (UBER OPTIMIST TRYING WITH ALL MY MIGHT TO BE A PESSIMIST BUT FAILING), "Biopsy? BIOPSY! Maybe they aren't sure it's a tumor! What if it's not!" Then the pessimist wakes up and says, "You dummy. They just want to know what kind of cells the tumor is made of. The radiologist already determined it was cancer. They just need more info about the tumor. They wouldn't schedule a biopsy if they didn't know it was cancer. They'd do more external tests."

Well, nice talking to myself and even getting called a derogatory name! hahahah

I guess (been reminded) I shouldn't put dates like this on blog, because a robber might see it, a marauder, or a pirate. If it was Johnny Depp...never mind. But I'm tempted to post the dates. I always have. I guess I can email if you want the dates. It's this month.

Thanks for caring. Bill is the same. Nauseated, tired, sleepy, achy, fevers at night, etc. Will be glad to see if they can give him something for the nausea. It's getting really old, being nauseated for an entire year. Maybe the tumor, if it is a tumor, is causing it. (My inner optimist slipped in "if it is a tumor." She's clever, that inner optimist of mine.)

Love to all.

Tuesday, April 3, 2012

Still Nuthin.

We still haven't heard from Wake Forest.

And we haven't called them, either!

We think we have entered a hypnotic zone in which, if we never call them, and they never call us, then everything will go away. Yay! We win!

Yep. That's the kind of pro-active realists WE are.

Sunday, April 1, 2012

Sunday: Tomorrow we're calling Wake Forest.

Still nothing. Tomorrow we're calling Wake Forest and make sure we aren't lost in a shuffle! Thanks for checking. And REMEMBER: if ANYTHING happens, I will post it RIGHT AWAY on the blog, and Facebook, so silence means nuttin happened. Love you all! Cowboy Billy and Diamond Lily