The big Chemo question

Reglan, can’t live with it, can’t live without it!

Danny is going through a new kind of hell now. Just when you think how can there be anything worse than what he has gone through already, something new drags itself up from the dregs of slimy hell.

REGLAN, the black box drug, Danny had to take to make his lazy stomach wake up after surgery has turned out to be an angel and a devil. He had to have it because nothing else would’ve made his stomach start working again. But the side effects have been horrendous.

It started in the hospital, shortly after his first dose. He became anxious and restless. Okay, we thought, who wouldn’t after spending so much time in the hospital and going through what he did. Walking as many as 7 times up and done the hallway trailing his IV pole behind him. Each time from 10-15 minutes each. But he still felt restless. He began jiggling his foot-a lot.

Then he came home and the crying started. Anything could trigger a crying jag, which is very embarrassing to a man who hadn’t cried since he was a small boy. This should be the happiest time in his life, but it has turned into the saddest.  It seemed odd, but sometimes people react this way after major surgery. The visiting nurse said it was probably the effects of being under for 8.5 hours.

Three nights ago Danny really had a lot of trouble sleeping.  He had to take Reglan at 3 in the morning , so I would wake up and then have to wake him up . So we decided to stop giving him the three o’clock dose of his Reglan.

The next day ( Monday) , he was  very depressed. He had a hard time sitting still. He had very negative thoughts. We went to visit a friend who just got surgery, we noticed right away that Danny wasn’t himself. Things were getting worse.  That night Sonnet and I tried doing some detective work to try to figure out what was causing all of Danny’s extreme emotions.

What had changed?

We finially pinpointed it down to the Reglan.  The FDA had already made it a black box drug. It was banned in many countries. We started reading story after story of people going through the same emotional problems. Some people had it even worse, they developed  horrible ticks, muscle jerks and strange facial movements. Thank God, Danny hasn’t got to that point.

He is scheduled to stop taking Reglan tomorrow. No one warned us that this could happen. As we researched more about Reglan, we found out that when you stop taking it the side effects get worse! Poor Danny, how much more can he take? We weren’t about to let him just stop cold turkey. So we developed a slow wean off. Each day taking less and less.

Yesterday was so bad for him. He felt helpless against the chemical warfare going on inside his body. Dopamine is very important. That along with seratonin is what makes us feel happy. But this drug blocks the dopamine from doing its job. Danny flipped back and forth between  anxious to sadness. He didn’t feel like eating, sleeping or doing anything. I feel so helpless watching him suffer so much.  I don’t know what to do to “FIX” it.

Last night he took 2 sleeping pills to try to fall asleep. He slept 4 hours and woke up unable to fall back asleep.

“I can’t do this anymore!” he quietly screamed. He wanted to scream out loud but didn’t want to wake the kids.
I rubbed his back.
I ran and got my iPhone, found a white noise app and downloaded it.
I played ocean sounds to try to sooth him.
I gave him a Benadryl, hoping it wasn’t too much.
Finally he fell asleep.

I dread today, how will he get through another day of withdrawal from the clutches of the horrible, yet necessary drug?

Generic Name: METOCLOPRAMIDE – ORAL
Metoclopramide is also used in patients who have poor emptying of their stomachs (gastroparesis). Treating gastroparesis can decrease symptoms of nausea, vomiting, and stomach/abdominal fullness. Metoclopramide works by blocking a natural substance (dopamine). It speeds up stomach emptying and movement of the upper intestine.
It can also disrupt the uptake of dopamine signaling in the brain. In the brain, dopamine functions as a chemical signal to promote feelings of happiness. Therefore, it can contribute to side effects such as depression.
Reglan is a dopamine antagonist, which explains its other possible side effects, including severe depression, anxiety, agitation, pacing, inability to sit still, jitteriness.

Common side effects of Reglan include:

• feeling restless, sleepy, tired, dizzy, or exhausted
• headache
• confusion
• trouble sleeping

What is a “Black Box” warning?
The Food and Drug Administration (FDA) oversees the safety of all medications used in the United States. Sometimes the FDA issues a warning to doctors and consumers to warn of specific side effects or drug interactions that may make a particular medication less effective or harmful. A Black Box warning is the most serious warning issued by the FDA indicating that particular care needs to be taken when deciding to use the medication.

Why did the FDA place new warnings on Reglan?
There is new concern that long term use (more than 3 months) of high doses of Reglan may lead to short term or permanent Tardive Dyskinesia symptoms. The FDA believes the greatest risk for side effects is in the elderly and elderly women in particular.

Keep in mind that the warning does not say Reglan should not be used at all. It is clarifying that it should be used with great care at the lowest possible dose and for short term use only.

The part of the warnings that concern us are:

• Depression, thoughts about suicide, and suicide. Some people who take REGLAN become depressed. You may have thoughts about hurting or killing yourself. Some people who take Reglan have ended their own lives (suicide). YIKES!

2 weeks post whipple

 

Danny is recuperating. It is a slow process.
His hair is starting to grow back, little tiny baby hair is poking through.
He is getting very impatient with the whole thing.
His favorite line is: “I just want this to be over.”
An old doctor who wore a bow tie used to say the remedy for everything is just a “Tincture of Time.”
Danny is in no pain . His strength is gradually coming back. But he wants to be strong- RIGHT NOW!
it’ll happen, in fact he will get stronger and more energetic than he has for a long time because the cancer was eating away his energy long before it showed.
He would always say he didn’t understand why he was so tired.
I would fire back, “It’s cause you’re old, baby!”
Guess I was wrong. It was because he had cancer growing inside of him.
But now he doesn’t (whole crowds of people shout HURRAY! at this point , if it was a movie)

Here is the most miraculous part of the whipple: HUNGER!
DANNY ACTUALLY GETS HUNGRY! You don’t know how amazing that is. He hadn’t been hungry for so long. now he gets hungry! He lost 55 pounds, now his body wants, craves, lusts for food! He’ll gain weight back, it’ll be slow at first till his body gets used to the new plumbing, but it will happen. Baby steps, baby steps.

His biggest struggle is figuring out what to eat.We add one new thing everyday and then sit back and see what happens.Yesterday we added white bread, like in Wonder bread! We haven’t had white crapo bread in the house for probably 20 years! But it’s easy to digest, so he had some and it worked!

I’ll tell you what didn’t work- TOFU!
The second day home Danny got really sick vomiting , the runs etc., so the resident said, ” No dairy for one month.!” She’s a tough broad. So I thought  I’d use tofu for in his smoothies for protein. WRONG! he got such terrible farting,burping and bloating! I forgot that tofu is really beans. It doesn’t look like beans so I forgot and we all know beans make ya fart. So add that to the list of no-nos.

LIST OF NONOs:

1. Tofu
2. Fiber
3. Milk products
4. meat
5. fried foods
6. alcohol
7. Sugary foods

Nose Job

I hitched a ride with Terry to day who works in Philly and does this terrible commute everyday of his life. He came up to Danny’s room to say hi. We turned the corner and there was danny sitting in bed with the tube back up his nose.

“What happened?” I said.

“There was so much blood. The guy didn’t know what he was doing. He just kept pushing it in and he making me bleed. He couldn’t get around the curve in the back of my nose. Blood was pouring out. So he pulled out and tried the other nostril and still couldn’t get it. I told him he had to stop. He said he had an idea.I said- YOU HAVE AN IDEA?. AN IDEA? Haven’t you ever done this before?
You got a short, thicker tube and jammed in in my nose to get around the curve and then fed the smaller tube down into my stomach. There was so much blood. I vomited. I feel sick.” said danny with a hoarse strained voice.

The clear liquid diet he was allowed yesterday wasn’t digested by his traumatized stomach and just laid in there making him sicker. Now they had to put the tube back in to suck out all the liquids and gastric juice his body makes until his lazy ole stomach wakes up. He is still in pain but he doesn’t want to use any morphine because he doesn’t want that sluggish stomach to be all drugged up. I told the nurse on him because I know if your body has to be dealing with pain and healing it is too much. You NEED pain meds to heal. Its true that you don’t want to use too much and it does slow all your body down. You just have to find a good balance.

He said he was so happy I came in early because he really needed me there. I knew he did. I can feel is emotions even from long distances. I think tomorrow I will drive myself in so I can be sure to get there early. I hate driving in the city, but when someone needs you, you do whatever you got to do.

Needless to say he was not a happy camper yesterday. He kind of looked like an elephant with that thing coming out of his nose. A resident doctor came in and took one look at it and said, “Its in too far, we have to X-ray.” The nurse said, “No it’s fine, he’s just a tall guy.” While the resident was there he took out one of Danny’s drains. He has two. One less tube ! Wahoo!

They took Danny down for an X-ray. Sonnet, Kevin,me and the kids went to the Reading Terminal market for lunch while they worked on Danny.I got my lunch to go and went back to the hospital leaving everyone else at the market. Danny returned with a new tube.The old tube was coiled up in his stomach which was causes additional pain. Danny was pissed. They pulled it out and fixed it. He got about a 10 minute rest and then they took him to physical therapy to work out. He walked, did a scary obstacle course, up and down stairs and ballet at the bar. hen he got back to his room he walked some more. They want him to walk as much as he can, which is still pretty hard since he’s connected to fifty million tubes.

Sonnet and the kids returned but Ana and Ry just bickered the whole time so Sonnet decided to just take the brats home. Danny was in no mood for fighting children. Bad babies, bad! Lerin came then and that made Danny smile. It was probably his only smile of the day.

What is That tube in his nose?

Nasogastric aspiration (suction) is the process of draining the stomach’s contents via the tube. Nasogastric aspiration is mainly used to remove gastric secretions.  It can also be appended to a suction system, however this method is often restricted to emergency situations, as the constant suction can easily damage the stomach’s lining. In non-emergent situations, intermittent suction may be applied giving the benefits of suction without the untoward effects of damage to the stomach lining.

Before an NG tube is inserted, it must be measured from the tip of the patient’s nose, loop around their ear and then down to roughly 5 cm below the xiphoid process. The tube is then marked at this level to ensure that the tube has been inserted far enough into the patient’s stomach. Many commercially available stomach and duodenal tubes have several standard depth markings, for example 18″ (46 cm), 22″ (56 cm), 26″ (66 cm) and 30″ (76 cm) from distal end; infant feeding tubes often come with 1 cm depth markings. The end of a plastic tube is lubricated (local anesthetic, such as 2% xylocaine gel, may be used; in addition, nasal vasoconstrictor and/or anesthetic spray may be applied before the insertion) and inserted into one of the patient’s anterior nares. The tube should be directed straight towards the back of the patient as it moves through the nasal cavity and down into the throat. When the tube enters the oropharynx and glides down the posterior pharyngeal wall, the patient may gag; in this situation the patient, if awake and alert, is asked to mimic swallowing or is given some water to sip through a straw, and the tube continues to be inserted as the patient swallows. Once the tube is past the pharynx and enters the esophagus, it is easily inserted down into the stomach. The tube must then be secured in place to prevent it from moving.

Great care must be taken to ensure that the tube has not passed through the larynx into the trachea and down into the bronchi. To ensure proper placement it is recommended (though not unequivocally confirmed) that injection of air into the tube be performed, if the air is heard in the stomach with a stethoscope, then the tube is in the correct position. Another more reliable method is to aspirate some fluid from the tube with a syringe. This fluid is then tested withpH paper (note not litmus paper) to determine the acidity of the fluid. If the pH is 5.5 or below then the tube is in the correct position. If this is not possible then correct verification of tube position is obtained with an X-ray of the chest/abdomen. This is the most reliable means of ensuring proper placement of an NG tube.Future techniques may include measuring the concentration of enzymes such as trypsin, pepsin, and bilirubin to confirm the correct placement of the NG tube. As enzyme testing becomes more practical, allowing measurements to be taken quickly and cheaply at the bedside, this technique may be used in combination with pH testing as an effective, less harmful replacement of X-ray confirmation. If the tube is to remain in place then a tube position check is recommended before each feed and at least once per day.

Drink deeply from the well of life

Sonnet and I pulled into Wawa this morning to meet up with Sandy who was already there waiting for us in the parking lot with a huge smile on her face. Sonnet and I ran into Wawa for some coffee and bagels to go. I rode down with Sandy and Sonnet rode alone. We babbled and chatted all the way to Philly. When we got to Danny’s room, he was sitting up in bed and was very happy to see us.

He is still in a lot of pain but he progressing amazingly fast. They removed his catheter again, giving him 8 hours and some Flowmax drug to help him. He told us how he got no sleep during the night either because it was a constant stream of nurses coming in attending to his medical issues. He’s not making that up! He still has about 7 bags of medicines flowing directly into his neck. He needs to be constantly monitored . Someone is always stabbing, poking and prodding him. My poor baby.

“I told the nurse that I want my wife to give me my bath. They think it’s because I’m modest but it’s because you do it the best. I know I will get a better bath from you.” Danny said. It’s true. I am an expert bath giver. One of my many talents. Ta-Dah!
Dr. Lavu came in while we were there. As you know he is our hero. I want to take him home he is so wonderful. Not only is he a top notch surgeon, he is also a warm wonderful human being. And don’t forget those gorgeous eyes!

Dr . Lavu said Danny could get the catheter out and start start drinking clear liquids. Hurray! Sandy told him he looked just like his cartoon. So I had to tell him that he is starred in Danny’s blog and that if you google his name we come up all over more than pictures of himself! Dr. Lavu blushed and said that that’s why he never goes on the internet. But you know me, if I think something- I gotta shout it from the highest mountain top and right now the internet is the highest peak.

Danny enjoyed Sonnet and Sandy and of course me visiting. Later in the day, his friend and former boss lady, Sharon came to visit. We all love her, not only for her external beauty (you know I love beautiful people, I’m an artist after all) but also for her internal beauty. This is one sweet, sweet soul. She brought a big flower/plant/balloon gift for Danny. He like flowers. He often asks me to have some for the house.

So now Danny can drink clear liquids and eat? clear liquids. He was so excited to have a lunch tray brought to him (well, as excited as he gets). But since this is after all a hospital, he was whisked away to physical therapy with only the time to look at the food on his tray but not to eat a bite of it.

Really? Since when is sugar-free jello healthy. Oh don’t even get me started on the horror of hospital food. I thought the broth was Danny’s tea so I put the tea bag in his broth and made a very strange soup indeed! Sandy brought Danny a small Shoofly pie  for when he can eat solid foods.

Physical therapy turned out to only be walking and stair climbing, so Danny came back disappointed. I think he had hoped for rock climbing and hang gliding. Sonnet and I headed over to the Reading Terminal market for lunch and Sandy went to meet her daughter for lunch. We choose a middle eastern  delightful platter of hummus and falafel . So yummy! We tried to scarf it down fast in Danny’s room before he returned but we didn’t make it. So poor Danny had to munch on squishy plastic orange jello while we finished our  flavorful exotic lunch. Sorry, sweetheart!

After lunch Danny had to do his daily breathing treatment where he sucks in oxygen and medicine through a big plastic tube. He hates that.

The nurse pulled up Danny dress to show us his incision and drains. The drains poke out of his stomach and pour into 2 grenade shaped bulbs. The incision wasn’t as long as they drew it out to be because it turned out the cancer was so contained and he din’t have to have as much of his junk thrown away. That means a faster recovery and easier digestion issues later. What he ended up getting is called a mini-whipple. That’s the little brother of Mr. Whipple.

Sonnet and I left the hospital around 4 o’clock and ran into horrible traffic – it took us 2.5 hours to drive home. Thank goodness for our sweet little friend Cary who had a hot baked chicken, mashed potatoes, buttered peas, carrots  and blueberry pound loaf  waiting on the counter for us when we trudged in the door exhausted. And now to quote myself from Facebook:

“I just want to say that the kindness and generosity people have shown us through these tough cancer days has been astounding and heart warming! Never ever doubt the bottomless pit of goodness in our fellow human beings.”

2 more days till surgery.

Hello Whipple, we’re ready to take you on!

We received fantastic news yesterday! Danny is getting the Whipple. After 3 months of torturous chemo (the strongest kind they have) and it didn’t do a damn thing except lower his markers from the 300 something to 100 something. The liver spot stayed the same (that’s a good thing), the pancreas tumor stayed the same (what?) and Dr. Lavu said we can get the whipple. We? It’s funny, I’m so involved with Danny’s cancer , I think it’s me getting a whipple!

Danny, Sonnet and I waited  over 2 hours and while the anxiety built to dangerous levels, our hero- Doctor Lavu walked in and told us this great news. He said there is still a little bit of doubt about that stupid spot on the liver. Since we didn’t get that PET SCAN ( I’m happy about that) the only way they will know for sure is to reach in and grab his liver to check it out and biopsy it. If all is good they will proceed with the Whipple. If it is a cancer spot (it’s not) they will just sew him back up and send him home. That’s not going to happen. They are going to do the Whipple, I just know it!

So now we are in training for surgery:

1. Eating good food and lots of it.

2. Exercise

3. No worrying!

 

Scan Troubles

6:30am only 27 degrees, I go out and start. The car to warm it up for Danny. Headed to Philadelphia to review. The Cat scan. He is scheduled for chemo but he is not doing it today. He wants to be strong for surgery.

8:30am- Darryl , the best blood taker in the world  finds a vein and draws blood from Danny As we wait to talk to the doctor. When I called earlier in the week to find out the results of the scan, I was told they won’t give results over the phone because the doctor likes to put up the new scan and old scan and compare them and show you everything while explaining and talking about where to go from here.

Wasted time.

Doctors love Sugar water!

When the doctor finally came in she didn’t have any scans to show us. I believe she hadn’t even looked at the scan at all before walking into the room. She turned to Danny and commented on his weight loss of 50 pounds.
She berated him with, ” Why don’t you just eat?”
What a stupid question, especially from a cancer doctor. It seemed she had no understanding of how pancreatic cancer works. It affects digestion and makes it nearly impossible to eat. Danny tries really hard to eat, but he just can’t.

 

She began with saying things about the initial scan that was totally wrong. This set my alarms off right away. Who was she talking about? She wasn’t talking about Danny. I certainly know every minute detail of his initial scans. I argued with her and she started back peddling. I guess she thought she was dealing with some backwater yokel. I’ve been reading volumes and volumes of information about pancreatic cancer and I at least know when someone is bullshitting us. Once, she realized she couldn’t lie her way through the visit, she began bullying Danny into getting more chemo treatments even though Dr. Lavu only ordered 6!
Danny said “no”.
She said his cancer would grow while he waited for surgery which could be a long time. We said we wanted to talk to Dr. Lavu first before making a decision. She said, we had to make a decision now! ( the old car salesman trick)
I said, “We don’t have to make a decision now.”
She said,”If we didn’t we would never be able to get an appointment again because it would fill up.”
Danny said ” No!”
And we left. Danny fired her and will look for a new oncology doctor.

We walked the cold, blustery streets of Philly over to Dr. lavu’s office to see if we could pick up the prescription for the PET scan. And maybe even catch a glimpse of Dr. Lavu and just touch the hem of his white lab coat for good luck.

Nadine, the office girl, told up the Pet scan was denied by the insurance company! We have learned that much of what goes on with modern medicine is powered by “the insurance”. But she assured us that they were reapplying and will get back to us tomorrow. She said, that if we can’t get a PET scan Dr. Lavu still wants to see Danny on Thursday.
Aghhhhhhhh… It makes your chemo head spin! Needless to say Danny is feeling discouraged, but only for a short blimp , tomorrow he will be back to his chipper and hopeful self.

Chemo #6

We made it! Chemo number six. It went pretty well. In some ways he is tolerating the chemo better. He doesn’t get quite as sick as before but he has developed some new side effects. While we were still in the hospital his speech got all garbled, like he just drank 3 glasses of Jack Daniels straight up! His upper lip did this really weird thing. It pulled tight and to a point. It stayed that way till we were half way home. His ankles and calfs cramped stiff but no pain, which made it difficult to walk. Other than this creepy new stuff he did well. I went to Midtown diner to get him some chicken noodle soup. I bought enough for both of us. In the past, he rarely ate anything while getting chemo. But he wolfed down his and mine and wanted dessert! What does this mean?I think his tumor has shrunk and he’s feeling better.

Next friday he is getting a CAT scan to see if he can get his Whipple surgery to completely remove the tumor. everyone light a candle on that day ( a catholic tradition). Our sweet neighbor- Mrs. Nancy Deviney, who by the way is a perfect angel, is paying the catholic church to have special masses and prayers said for Danny on friday. This scan is a turning point. Danny is happy and scared about the scan. In his heart ,he really believes the scan will show that he can get surgery but what if it doesn’t what then? More chemo?

How long will we have to wait for results? The suspense will be torture. Stay tuned for the next exciting adventure…..

The Midtown Diner

Best chicken soup in the world!

122 S 11th St
Philadelphia, PA 19107

Danny October 7