Chemo Port out!

Today a week ago, Danny and I drove down to Philadelphia  Jefferson Hospital to have his chemo port removed. Since he’s not getting chemo anymore he sees no reason to leave it in.

The oncology doctor wanted to leave it in, just in case he would change his mind about chemo. If it’s left in , he would have to get it flushed all the time to keep it clear. So he decided to get it out.

It did’nt take long, only about half an hour. He had a choice of being put under or just getting local numbing. Danny went for the local. He came out with a small bandage which he could take off on Friday. When he takes a shower he has to completely cover the wound so as not to get infection. The removal of the port left an empty pocket under the skin that could fill up with blood and get infected, so he can’t lift anything at all for two weeks. He’s not allowed to do anything that involves his upper body. He hates being restricted even more than he was before. When we took off the bandage it left a blood blister along the edge where it stuck.

Only one more week of tight restrictions and then back to being able to lift no more than a milk carton.

Fever!

Danny started out the day with a fever of 102.
Dr.Lavu said that when they took out his gall bladder, along with his pancreas head, section of intestine and bile duct, the gall bladder had been full of pus.
So maybe that where the fever was coming from. Or maybe a urinary infection from the catheter. Or maybe just from not breathing deep enough. So they took lots of blood for tests. Urine samples. They gave him an antibiotic.
His fever came down.
Dr.Lavu said,” We can take out your nose tube if it’s too uncomfortable .”

“No, leave it in , if you think it will be better.
It’s not too bad.” Said Danny.

The fever went down, but Danny only got in 2 walks today.

I drove into Philly today by myself this morning leaving At 5:00am, I can’t expect anyone else to get up this early on Sunday. I pack my suitcase and expect to stay with a woman I met on the airplane back from Japan last year. She offered her home to me which is very kind.

Jesse,Dotty and her new husband Robert came to visit.
Sean and Lara came to visit too and Lerin. Sean brought a huge green turtle that walks upside down across the ceiling. That’ll make some interesting hallucinations!

I left before dark so I could find my friends house before dark. I found her house, only 10 min away. But there was no place to park! I drove and drove and then I started getting scared. It was like I was on Mars! Rows and rows of houses all connected. Strange loud cars with stuff sticking out of them. I tried to call my friend, she didn’t answer her phone. So I headed back home. A bus almost hit me, a large horned buck was on the Schullkill,I can barely see at night- but finally I made it home. Exhausted I went straight to bed.

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.

13 can be Lucky! Danny gets out of ICU

Last night around 8:30 p.m. they moved Danny out of ICU to the Pancreas floor in the Pavilion at Jefferson. It’s the 13th floor. But it’s anything but bad luck, this means he’s doing well enough to survive on a regular floor. When Sean and I arrive, he is sitting up and had already taken 3 walks. His catheter is out and he is allowed water sips and ice chips. He’s developed a mouth sore and a toe sore? A toe sore ? How did that happen? He seems to be in more pain then yesterday and he grumbles about having to push the morphine button every 6 minutes. Why can’t it just be automatic? They tell him because he could overdose. They tell him that the only way to totally get rid of all the pain is to knock him out completely and that would not help his healing. I hate seeing him suffer. It just rips me up. Maybe that is why I feel so tired, I am more tired than I have ever been in my life. I’m usually an extremely high energy kind of person but after the release of emotions when Dr. Lavu told us all the cancer was gone , all my energy seemed to be gone too. Weird, huh?

Poor Danny tried and tried to get some rest but there was someone in his room all the time. It was a never ending stream of medical people all day long. They came it to prick his finger to check his blood sugar, with 1/3 of his pancreas gone he could develop diabetes. But he’s doing good with that too. The first night in ICU it was 160, then next day 130 and today 104! The normal range  is 70 to 100 milligrams per deciliter. So he’s almost there.

Danny told us how the wall paper would slid down the walls and the curtains would slid up the windows. I guess the morphine is working. Too bad he’s not getting better hallucinations. Maybe later when it builds up more in his system. If you’re going to have a lot of pain you might as well have good hallucinations!Where’s the happy endings?

He wanted to shave his whiskers, he is starting to look like Jed Clamped. He forgot that he had about five tubes going directly into his neck vein and shaved over it. He yelped, but didn’t hurt it at all because they had it bandaged up real good.

He had a deadline to pee by 2:00 p.m but no luck so he had to get the catheter back in, I told him it wouldn’t hurt at all. WRONG! I forgot I was a girl- he is a boy! Different plumbing. OUCH! Poor guy! And then they had trouble and had to get an expert in to do it and they had the gall to ask if a student could try it and learn! HA! You learn on someone else, thank you very much! Practice on a doll or something like maybe- a hot dog! Not on someone who is already in a lot of pain. You know he told them what they could do with their eager little student.

Special Thanks to :

Lynn for dropping off lasagna , mac and cheese, italian bread and chocolate chip cookies.
Sharon for having mexican food delivered to our door by a gorgeous, gracious  man in a suit.

 

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!

 

Chemo Port Day

Nothing past midnight to eat or drink. Set alarm for 4:30. Today we drive down to Jefferson Hospital for a Port-a-cath. Now he can’t swim for two weeks. When he takes a shower he must cover the incision.

It’s a thing that they put under his skin so they could give him lots of needles without ruining his veins. Good thing too! The male nurse who tried to put an IV in Danny in the staging area before surgery, stuck him a total of four times. The last attempt he dug and dug around in Danny’s arm searching for the vein. What the fuck is that about? Is it a male thing to never admit defeat or something? I have never saw a female nurse try so hard and hurt the patient so much trying to get a vein to work. And then he ended up finally giving up and calling a female nurse who got it first time. Danny has beautiful veins to look at but they don’t work so well. I’m not saying just because she was a female she got it first try, other females had to try multiple times but they never DUG AROUND for god’s sake. Poor Danny! I wanted to punch the nurse guy. “It’s a person your working on not a car engine!”, I thought but did not say because I am very polite.

The surgeon came in who was to do the procedure. Dr. Colette Shaw, who studied in Dublin at the Royal College of Surgeons. She has a lovely irish lilt. And what she had to say to us was even lovelier!
She looked at us, looked at the chart and then said, “I remember you!” Your the man with the liver biopsy last week.”
We nodded in unison. She looked puzzled. “But why are you here? It was negative wasn’t it?”
I said, “Yes it was, but the PET scan was not. We had a whipple scheduled and everything, but the PET scan made them reconsider and now he is getting chemo.”
She looked concerned. She said,” I’m going to recheck your records, I am positive I got it. It was a small lesion, but I know I got it!”

Danny and I looked at each other and smiled. “Really, could you? That would be so wonderful!”
She left. We could see the gears turning in her head. This was good news to us. But now Dr. Lavu is out of town for 2 weeks. So there couldn’t be any surgery till he returned. I guess a little chemo till he gets back won’t hurt. That’s how they do it in Texas, the supposedly best cancer in the world.

So a cute little nurse named Danielle came and took Danny to surgery and I was directed to the waiting room. I’ve been doing a lot of waiting lately. I am the lady in waiting. Makes me kind of royal, I think. I settle into a comfortable chair ,plug in my purple earphones (everything is purple these days because that is the Pancreatic Cancer color) and listen to “This is Your Life” on NPR.

In one hour, cute ,little Danielle comes to get me to go see Danny. He looks great. They bring apple juice and saltines for him since he hasn’t eaten since yesterday.

“Did you see Dr. Shaw?’ I ask.
He says no.
“Not even during the surgery? ”
“He says no, they had me completely covered, even my face.”
“Oh”, I say quietly. I guess we won’t know what she saw when and if she reviewed his biopsy.

“Maybe we should get a second opinion?” I say.
“No, we already had several opinions. We’ll just wait for Dr. Lavu to return and talk to him about it.” said Danny.

Liver and Onions Biopsy

At 9:00 am,the gurney comes again to pick up Danny. The Transporter guy stands outside Danny’s room polishing his chrome and wheels getting it all pimped up for our special passenger. The Doctor doing the procedure is a pretty irish girl with a strong accent. She tells me they can’t put Danny completely asleep because his liver is located high and they have to be careful not to puncture his lung with the giant needle. So Danny is only getting a local anesthesia and then he has to hold his breath and pull his lung up when they stab him with the needle. They use an ultra sound to guide them and snatch a tiny piece of Danny to check if that damn spot is cancer. It’s only 1cm. wide so it’s tricky.

And that’s that.
Now Danny can really come home. He’s a little sore and his stomach is still causing him some pain. About 3 cigarettes worth of pain. This is a silly little inside joke we have. When this first all started with the cancer thing, Danny saw a video and the doctor on the video said that Pancreatic cancer was like 20 cigarettes pressed to your stomach. We thought it was the silliest analogy we ever heard. So then Danny kept referencing his pain by the number of cigarettes. Every time he did the nurse would get really concerned.
“You said you didn’t smoke!” she’d say. We just laugh , after reassuring her its just a family joke.

GOOD NEWS! Still Pancreatic cancer but not hopeless.

Dori, Sean, Jesse  and I leave the house at 6:00 to head back to the hospital. Dori didn’t get in last night till around 3 in the morning. As always there was an accident on the highway which jammed up traffic. Sean drives and we flop into his car. We park in the parking garage at the hospital on the level called Tyranny. And go from one huge building to the next trying to find Danny. We finally get to the right building and the security guard stops us.
“You have to wait here because the nurses want us to call up and let them know when someone is coming up.” his stubby fat fingers fidget with a repetitive drawing on his tablet while he waits for the phone to be answered. He doodles a three dimensional box over and over. I just want to get up to see Danny. He draws five boxes before he finally hangs up the phone and tells us we can go up to the 13th floor. Danny went to the ER on July 13th and now he’s on the 13th floor. I finger my Lucky Girl necklace and thank God I’m not superstitious.

This morning , like every morning this started, Danny’s face lights up with a huge smile when we walk into his room. Lerin is half asleep on the recliner/ bed chair that she spent the night on. Thank goodness she did! Danny told me he was terrified last night because they had told him at the last hospital about the cancer while he was still groggy from anesthesia and he thought that he would die the next day.Lerin stayed up and comforted him,reassuring him he wasn’t going to die the next day. Danny gave her a map to his treasures and bank accounts and all that other important information.
His room was huge and it was private. He likes that because people annoy him. but even though he didn’t have a roommate plenty of people came in the room. Dr. Lorean who came in and asked if it was okay to teach a class about pancreas over Danny. Danny agreed and in troops about 8 resident doctors. They circle danny’s bed and the class begins with them trying to figure out how to diagnose Danny’s condition. Everyone here is sweet and very considerate. Dr. Lorean tells Danny he’s going to get another ERCP this morning and that the Doctor at Phoenixville had grossly overstated the cancer. He told us that they do hundreds of ERCP’s and it’ll be no problem getting a stent in Danny’s blocked bile duct.  Then doctor and his row of baby ducks filed out.

For the first time we felt a little hopeful. Maybe Phoenixville was wrong. Maybe they just weren’t used to Pancreatic cancer. It is  rare to get this type of cancer but it is deadly.

The janitor informs us that Danny has to move to a new room because his toilet is broken and can’t be fixed right away. So we pack up his few belongings and move to the other end of the hallway to a much smaller room. Danny has diarrhea now, who wouldn’t with this kind of terror? So they have to do more testing in case he has some kind of poop virus that is going around. He gets a 3D CT scan and then the nurse comes in to remove h11:51 am he climbs aboard a gurney to head to the operating room. A nursing student asks us if she can come along to observe. I tell her , “Of course, it’s your place.”

All 7 of us squeeze into the elevator next to Danny. He is pushed down hallways , across bridges and into more elevators till we get to the OR. We all follow him in. The nurse says , “Whoa! That’s quite an entourage you have there. I can tell you’ve never been sick before. Just wait after awhile no one will be with you. I see it all the time.” She shoos out everyone but me and the nursing student. I sit in a chair next to Danny and hold his hand. We have so much to talk about and this damn nursing student pulls up a chair right next to mine and sits there the whole time. She’s going to make a terrible nurse. How could she be so rude?

The operating room nurse comes over and says, “EWWWWW! Why are you touching each other so much? My parents used to do that and its disgusting.” She fiddles with some wires. “Why are you holding his heart, there’s nothing wrong with his heart.” She pulls out Danny IV so she can put in a new one.

“We always touch other other a lot”, I say. How sad that this woman thinks that two people who love each other shouldn’t be touching.

They wheel Danny away and I go join the kids in the waiting room.

Dr. Loren came out and told the whole gang to step into the conference room. He said that the ERCP was successful and he was able to put in the stent and Danny’s bile duct was open. HURRAY! His Liver juices can flow again and he’ll return to his normal  color.

The doctor ordered a liver biopsy because of the spot seen on his liver. He believes it may be cancer that spread from his pancreas . This would be very bad news. That would mean the cancer has gone into his blood steam and can go anywhere in his body. Let’s just hope it is just a benign spot. Hope.

PANCREATIC CANCER

This is a day we will never forget. Danny is prepared for another procedure. He is going to get an ERCP, which involves him laying on his stomach and having a tube put down his throat so they can put a scope down there and look at his pancreas. He’ll be asleep. In preparation they do a a MRI and ultrasound.

While he is gone his buddy, Marc V. stops by to visit. It’s Marc’s lunch break so he waits for Danny to return but no show. Marc wishes Danny well and leaves without getting to see Danny.”If there is anything we can do, let us know.” he says as he leaves the room. Jesse H. is there visiting also. Danny returns and gets a big smile on his face when he sees her. We’ve known her since she was a tiny bald headed baby. The transporter guy comes to whisk Danny away to the OR for his ERCP. They tell Jesse and I to follow. He gets ready for the procedure and we can wait with him. The nurses talk to him and the anesthesiologist talks him about how they will be putting him to sleep. Finally they take him away and we are told to go sit in the waiting room. Jesse and I laugh and giggle at the nurses pushing large piles of books and files around on office chairs. An hour goes by and the doctor comes out. I knew immediately something was terribly wrong. It was like she was in a tunnel floating toward in with a horrible look on her face and a box of tissues extending in front of her like a battering ram.

“The ERCP failed. There is no hope. Your husband has PANCREATIC CANCER and  its everywhere. There is nothing we can do. We couldn’t unblock his bile duct. I’m sorry. ”

Tears stream down my face. Loud sobs. My body begins to shake uncontrollably.I get very, very cold. The doctor hands me the box of tissues and leaves.
“No,no,no,no,no,no,no,no.” I repeated over and over getting louder each time. Jesse puts her arm around me. She is crying too. A nurse comes in and wraps a warm blanket over my shoulders and holds me tight. She says. ” I’ll pray for you.” I whisper, “we’ve been together since I was fifteen and he was sixteen. This is suppose to happen. It’s not how we planned it. I had a countdown on my iPhone till the day he would retire and we would play together all day. And now my best friend in the world was dying. Dying! I begin texting. My est girlfriend Sandy was upstairs delivering a bunch of red heart balloons with one truck balloon. She text me that she was here and where were we. I text back, “Danny is dying.” She wants to come to me to comfort me but I have no idea where I am. We are in the same building but she can’t find me and I don’t know where I am.

Stage II
In stage II, cancer may have spread to nearby tissue and organs, and may have spread to lymph nodes near the pancreas. Stage II is divided into stage IIA and stage IIB, based on where the cancer has spread.
Stage IIA: Cancer has spread to nearby tissue and organs but has not spread to nearby lymph nodes.

Not too bad if it hasn’t spread

I try to pull myself together when they say I can go see Danny. He is groggy but alert enough to ask me the dreaded question, “Am I going to die?” How in the hell do you answer that? I say, “Probably.” We hold each other and cry. They take him back to his room. I text our four children to come to the hospital as soon as possible. We have no idea how soon he is going to die. Danny believes he’ll be dead by the next morning. Lerin and Sean come immediately. Our oldest daughter is on vacation at Yellowstone park with her three children. She heads right home driving 26 hours straight. Dorian hops a flight from Denver to Philadelphia.

The surgeon returns and explains to Lerin who is a nurse about her fathers cancer. She is already toning it down a bit.She said she had a friend at Jefferson Hospital  and had arranged for Danny to go there. Sean and Jesse drove down to Philadelphia to wait for danny to arrive. Lerin and I were going to drive down separate .The ambulance finally arrives and takes danny down to the city. It took so long for them to come that Jesse and Sean came back. Lerin ended up driving down herself since she had to pick up her sister, Dorian at the airport. After Lerin picked up Dorian she decided to stay at the hospital with her daddy and Dorian drove her car back home at 3 in the morning.

I ended up going home. I was too exhausted to do anymore  and I knew I’d need my strength for the next morning.

Danny July 15-The C Bomb drops!

The C Bomb drops!