Christmas without Cancer?

Danny  had his appointment with the new oncologist yesterday. Sorry to say we weren’t that impressed with her. What is it with oncology doctors?  She did not like that Danny decided not to get Chemo or radiation. She tried all kinds of threats. She didn’t tell us anything new. I had hoped she would give us “some crazy miracle cure that works” cure, but I knew that was just a fantasy.
She said, ” What if it comes back in 2 months and then you’ll be sorry you didn’t do chemo.”  She threw all kinds of statistics at us. First she said if you don’t get chemo there is a 80% chance it will return and you will die., then she said if you get chemo you have a 75% chance of it returning and then you will die. I said, but that’s not much difference to make it worth going through chemo. She replied that it was. She said a 1 in 4 chance is better than a 1 in 10 chance! Hmmm, I’m not good in math, but somehow that just doesn’t seem to be the right numbers? We are going with the 25 % chance that the freaking cancer is just gone-zippo, no cancer. The chemo (which by the way was the strongest poison they could throw at any cancer cell did NOT do a thing to the pancreatic cancer cells in Danny’s body. The tumor did not get any smaller at all. You may say but maybe it prevented it from spreading. Maybe. But if that is true then wouldn’t it also have killed all the teeny microscopic cells that supposedly MIGHT be floated around his body undetected just waiting to settle down and grow in a cozy new home like his lung?
Danny wants to take the chance of living a good life without chemo and doctors making him feel like shit. And if he does get the cancer  back, he wants to die a dignified death and not become a walking death zombie,  barely staying alive only because his body is juiced up with toxic chemicals.

So….

January 8th, Danny is getting a small surgery to remove the chemo port embedded in his chest. The oncology doctor wanted him to leave it in there in case he changed is mind. He firmly told her he would not be chaining his mind. Then he has to get blood work, a new CAT scan to serve as a base line and we come back to see her in February 4 .

It seems our life has been divided into two parts, the life before cancer and the life after. I guess it won’t ever be the same.
But we make the best of it and try not to dwell on the icky, bad stuff. I mean, we can’t ignore it or deny it. It’s too big, too real. But we can always make the choice to either focus on the death and suffering  part and be miserable  or focus on the love, family strength and beautiful life we have together now and be happy. It is a choice. How you think your thoughts is a choice. You can either feel sorry for yourself and wail- Whoa is me? or Why  me? or think “No! I’m not going to allow my thoughts to take the low road and I’m going stop those black thoughts dead in their tracks and instead to think of all the good , wonderful things you have in your life right now and choose to be happy, thankful and joyous.
There was a time when Danny said, “I’ll never make it till Christmas.”
I couldn’t cheerfully chirp, “Of course you will. ” Because I try to never lie.
No one knows with Pancreatic cancer. But he did make it it. Hurray!
Merry Christmas everyone!

Danny with his 2 beautiful Granddaughters, Ana and Jocie who live with us.

The big Chemo question

Not a month, but 4 weeks since Whipple surgery.

Danny’s whipple scar looks great!

It’s been 4 weeks since Danny’s Whipple and he’s doing great! He gained a pound! Hurray!
The crazy stuff from the Reglan is over, and he’s eating much better.
He can now walk 2 times around the mall- 2 times without sitting down.
He does his physical therapy every day. He is so dedicated to getting better and stronger.I admire that in him, the way he has such self-discipline to keep working at something even when its hard or uncomfortable.

He’s still very emotional but its more happy emotions. The experts say this is normal for this type of surgery. So okay, we’ll take that. It’s livable now. Between the 8.5 hours of anesthesia, all the chemo drugs and all the rest of the drugs and the terror of looking death in the eye, anyone would get emotional about it!

Tomorrow he sees Dr. Lavu. We have to decide if Danny is getting chemo and radiation. This is a scary decision. From what Sonnet and I have researched there is very little benefit to doing this treatment. First of all – they got all the cancer out. CLEAN MARGINS- they said. That means they got all the cancer!
The chemo/radiation would just be extra insurance. But even as extra insurance, it isn’t very promising. But what we do know for sure is that chemo is pure torture. Pancreatic cancer is different from other cancers. You can’t compare what old Aunt Lulu did for breast cancer. Chemo and especially radiation doesn’t do much for Pancreatic cancer. If chemo was easy, we’d say sure why not? Why not do something that maybe will prevent the cancer from coming back.  But there’s only a small chance- so why do it?
Unless  Dr. Lavu comes up with some research that says chemo/radiation  will prevent cancer from coming back, Danny doesn’t want to go through all that agony again.

Yesterday the hell raising Peter O’Toole died, an Irish actor who played as Lawrence of Arabia. In 1976, He was diagnosed with  pancreatic cancer. He too got a whipple but they took a lot more of his stuff than Danny. Peter lost his entire pancreas, most of his stomach, his gall bladder and some of his intestines. He developed diabetes due to having no pancreas. But here’s the part Danny loved to hear:
PETER O”TOOLE lived 37 years after his whipple! He lived to the ripe old age of 81. And that was with chain-smoking, heavy drinking and partying! That’s very inspirational for Danny! Wahoo!

Peter O’Toole lived 37 years after his whipple!

Aren’t Irish men the hottest men in the world? Oh yeah, you know they are!
Now if I can get back to Danny. My own gorgeous Irish man with blue eyes. We are settling in to a recuperating routine. Walking, exercising and Rummy!

Let’s play Rummy!

Bowie , our standard poodle is a therapy dog. That’s what they told us we we bought him. For the first 2 years I swear they meant he needed therapy, but now he’s doing pretty good. Look at him holding Danny’s hand ! I call that puppy love therapy!

A man and his dog.

Bowie, afraid of his own shadow but full of love for his family.

There was a time, not so long ago , when Danny said, “I won’t make it till Christmas.” Well Christmas is only a week away so I think he will be wrong!

Danny wears several layers of clothes because he is always cold. especially his feet.

“I’ve got nothing but good news”, said Doctor Lavu.

My day began at midnight when Danny woke up because he couldn’t sleep. Which is not surprising, considering he was about to get major surgery in a few hours. He had nothing but clear liquids the past 24 hours. Lots of broth, juice and jello. He had to be wiped down with some special sticky solution pads before getting into the bed with clean sheets and a clean wife( a first for everything).

We laid awake in bed and talked about the upcoming surgery. I reassured him that it was all going to be fine. I knew it in my gut ,that as usually we would have the “luck of the Irish” and pull through this trial by fire. It has brought our already close family into a tight little ball of love.

3:30 am Sean and Lara ,his girlfriend, showed up right on time and we tumbled into the truck . Lara took her own car because she had a evening class and would have to leave the hospital before us. We got to Jefferson Hospital in no time at all, for once traffic was light on Highway 76. We were directed to the 9th floor of the Gibbon building and they snatched Danny away to prep him for surgery.  I was allowed to go with him but Sonnet, Lerin, Sean and Lara had to stay behind in the waiting room till he was ready to say goodbye.

Again I wiped him down with the sticky solution on prepackage wipes but this time it wasn’t allowed in any skin folds or his genital because it might pool there and not dry and catch on fire! (That’s what Lerin told us- she just attended a seminar on OR fires!) And I sure didn’t want that to happen. He was robed in a heavy paper gown, thigh high white stockings (kinda sexy) and yellow socks that were too small for his size 11 feet. The nurse who wore her glasses over the middle of her ear injected his stomach with Heparin to help prevent blood clots. A baby doctor came in and introduced himself as a student doctor who would be observing the surgery, we could tell by his coat length that he was at Ashley’s level (our medical student niece).Then the nurse summoned the kids back to the room for our last teary goodbyes. Dwayne the pusher came and whisked him away to surgery.

We were directed to the 8th floor, where there was a very nice, huge waiting room with FREE hot drinks from a vending machine. Did I mention there was FREE gourmet coffee and hot chocolate and it was FREE! We staked out a L shaped area as our own and settled in for a long wait. Lerin snagged 2 pillows form the quiet room. They had a huge flat screen computer screen that showed each person’s location during surgery so you could know when they were done and transferred to their room. And then we waited and waited and waited and waited and waited and waited and waited and waited and waited and waited and waited and waited and waited and waited and waited. They had promised that every 2 hours a nurse would call from the OR to give us an update on Danny’s situation. We got our first notification.

“Will the O’Connell family report to Phone #1 for your update.”

There was a row of phones with dividers and desks to receive your call. We gathered around the phone and held our breath, would the damn spot be cancerous or not? This gigantic question determined Danny’s fate . Life or death all determined by a spot no bigger than the mole on my cheek! Because if it was ,Dr. Lavu would just sew him back up and send him home to die. “Was the biopsy done and are they continuing with the Whipple?” I asked fearful to hear the answer.

“YES! The spot is benign and they are proceeding with the Whipple! I will call you again in 2 hours.”

YES! She said Yes, she said yes to life for Danny! We hugged in a big group hug, tears of joy and goosebumps and wicked crazy happiness! Everything is going to be alright! It was the happiest moment in my life. The entire room was staring at us with smiles on their faces.We were too excited to sit still so we went for a long walk and ended up at Ross. I pretty much HATE shopping but it was good to walk. Street people and beggars asked for money the whole way. Noone bought anything even though I encouraged Sean to buy Lara a diamond ring as we walked by rows and rows of sparkly stuff along Jewelers Row.

And then we waited and waited and waited and waited and waited and waited and waited and waited and waited and waited and waited and waited and waited .

Another call.

“Will the O’Connell family report to Phone #2 for your update.”

No much to say other than Danny was doing great. Okay. So we left for lunch, but Lerin’s belly was upset from all the crazy drama or something and she stayed back. “I’m sure I won’t want any of the strange food you guys will eat anyway.” she said. We walked down to Chinatown and had a giant bowl of $5.00 hand shaved noodles with seaweed at Nan Zhou Noodle house on 1022 Race street. It was so delicious and belly warming!. Sonnet said if she hadn’t recently become vegetarian she would have tried the intestines. Uh…..no thank yo. There are some things I don’t ever want to try. Sonnet said its good to try foods you’ve never had. I said, ” I never tried dog poop and I never will. Although who knows what I ate in Japan since I never knew what I was eating.

We went back to the waiting room and did what you are suppose to do in waiting rooms- we waited and waited and waited. After 8 hours Dr. Lavu came out of surgery, washed Danny’s blood and guts off of himself and came to see us in THE QUIET ROOM. This amazing man din’t even look tired but he assured us he was.

“I’ve got nothing but good news”, said Doctor Lavu. The liver spot was difficult to get to. I could feel it, but it was way under and behind the liver. We shaved off and biopsied three spots and it was benign. So we took out 1/3 of his pancreas (with all of the tumor), gallbladder, some of his intestine but left all of his stomach! It took so long because the chemo had enflamed everything. He didn’t need any blood and he’s doing really well. His margins are great ,meaning they were able to get all of the cancer and not leave any tiny bits around the edges. He said we would be able to see Danny once he was all settled in the ICU where he would be for the next 2 days.

So we moved to a new waiting room outside the ICU and guess what? We waited and waited and waited. We have now have waited about 10 hours. But it was all worth it when we got in to see Danny and he was awake! Well, kind of awake. Mostly lucid but occasional lapses into morphine induced fantasy. He mentioned that the happy ending was good. Maybe because his nurse was asian? Trust me , he’s never been to one of those “Happy Ending” places- I think? Then he started singing the theme of “Mr. Ed” But other then that he was thrilled to see us. He smiled a lot even though he was in a lot of pain. He worried that he only had a limited amount of morphine and what would happen if he ran out or what if he lost the button that he would push to get more morphine. We reassured him there was plenty and they wouldn’t let him suffer. He got his blood sugar tested while we were there and it was 160, which is a little high but Lerin (who is an RN said that’s normal for surgery patients) We all kissed him and I stroked his forehead which he always loved but this time he was worried I would mess up his hair! He hardly has any hair left to mess up, but I put the few strands left in place. He looked good, really good. I had been warned by Dr. Lavu and Sandy that he would look awful with all the tubes coming out of him- but he looked great. Good color and not swollen at all. We only stayed about 10 minutes because he really wanted to just sleep and he struggled to stay awake because we were there. We promised to be back the next day and went home. It was a hell of a happy day.

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

Chemo #5

He made it to chemo number 5. They say it couldn’t be done. Only 20% make it this far. Danny only has one more chemo to go till he gets his scan, The scan that decides if he can get surgery or not. If he can’t , well….we’re not thinking about that because he will!

Nurse Regina

The side effects are building up. His hands get so sensitive to cold he had to wear two pairs of gloves. I have to warm his drinks to 88 degrees. He uses wooden utensils because they aren’t as cold. When they put in the Irinotecan his nose started to run and his stomach grumbled and rumbled. He made a dash to the bathroom. His nurse gave him two injections in his arm and that quieted down the thunder in his belly. He also got a flu shot, so he was a pin cushion that day.

Ashley, our niece came to visit while Danny was getting chemo. She is doing a rotation at Jefferson and could sneak away to visit. That cheered up Danny’s chemo day!

Ashley

Danny October 7

Happy Danny

Today they came and took Danny work truck away. It didn’t seem to bother him anymore. In fact, believe it or not he is actually happier now than he was when he was working. I never realized how much stress he was under in his job. Even the stress of having cancer is better than work! He smiles more and is so relaxed. Just look at this happy face! He’s feeling good for the next couple of days till Chemo #5 on monday.

Chemo day #4

Here we are again sitting in the waiting room at Jefferson Hospital. They have a great breakfast buffet from Au Bon Pain. We had a chocolate croissant and super strong coffee. They never have healthy food for sick people, I guess it’s better for business that way! Keep ‘ Em sick- make more money! Danny feels good today, he still can’t handle cold things without getting tingling in his fingers. Even the steering wheel causes pins and needles, we have to put some gloves in the car.

7 Chemo days of hell

Today is the seventh day since Danny’s last chemo. He is still feeling nauseous , abdominal pain and extremely weak and tired.  He has lost 27 pounds. He barely eats anything. I try to cook things he might like but most are met with a scrunched up face and refusal to eat. He tries  he really does. It’s just so hard. Everything tastes terrible to him. Everything. I tell him to just think of food as medicine.  Mostly he can eat  or drink sometimes a :

• Protein shake: made with a banana,almond milk,raw honey and a tiny bit of kale
• Cheerios with almond milk
• Pizza with the cheese ripped off and put on Jocie’s pizza (she loves that, she’s says “what’s the point of pizza without cheese?)
• Ramin noodles
• Bitter melon
• Green Shake: made with Spirella,lots of kale,banana,cranberry juice

He still is having trouble with cold things. The one part of the Chemo makes the nerve endings go whacko. So his throat and hands can’t tolerate cold. They feel like a fire or electrical shock when only the slightest cold touches them. Last week this only lasted a few days, this week its still lingering for the 7th day. He sleeps a lot. He can’t wait to go to bed at 7pm and sleeps till around 8 am. Then he naps most of the day.

Yesterday he taught us (Sonnet, Kevin (Sonnet’s boyfriend) Sean and I how to close the pool.
“In case I’m not here next year.” he said.
I video taped the steps so we can figure it out next year. Although if he is not here next year I don’t know if I would be able to watch the damn video anyway without bawling my eyes out. But we’ll cross that bridge when we have to. We’re hoping we won’t have to.

It’s such a weird thing. Every occasion may be the last one or maybe not. All of us are going to die at one time or another but it sure changes things when you know it may only be months away. It really changes your thinking , even though the reality is anyone of us could die before Danny. His birthday is coming up in ten days, another event that has him thinking it could be the last birthday he sees. Usually birthdays are wondrous days in our family. The birthday person gets to be king/Queen for the day and everyone has to do their bidding. Their are special meals and special privileges. Cake and ice cream and a really long birthday song and presents. But this year when Danny thinks of his birthday , it makes him sad.