TPN

February 05, 2017 by Genie Stryker in Cancer, Message

There was a lot of discussion about how to handle Rich’s nutrition as he moved into hospice. Both hospice organizations we worked with don’t offer TPN as part of their services. It’s not part of their philosophy. Hospice is about escorting someone peacefully through the end of life, not extending it.

Because of the emotions involved in all that, our hospice group agreed to step down Rich’s TPN over the course of two weeks. Rich was receiving 2500mL of milkshake intravenous nutrition. We stepped him down to 1800, 1600, 1400, 1200, 1000. And we kept him at 1000mL through February 1.

Ever since Rich left the hospital at the beginning of December, he had horrible edema (swelling) in his feet and lower legs. His calves and thighs were the same diameter. We tried raising his legs and using compression socks. There wasn’t a medication the doctors were willing to use for fear of it causing other issues for Rich with his heart or blood pressure.

On Wednesday, February 1, the hospital bed arrived. That was the last morning that we hooked up Rich’s 1000mL of TPN. It was still an emotional thing for those not dying. I’m not sure that Rich said anything about it himself. I was on the phone with my mother and she started crying, “So now he’s going to starve to death?!”

“No, Mom. He’s going to die of cancer. Because he has cancer. He’s going to die of sepsis. That’s how this works.”

I’ve mentioned before that Rich has had wild fluctuations in his temperature. It would roll between 94 and 107 every day. It was miserable and stressful for all of us.

We hooked up Rich’s last TPN at noon on the 1st. His temp went up to 107.3 at 2:15pm. And ... That was the last time he had a significant fever. He took 1 Tylenol on February 2nd to bring it down from 100.6. All day yesterday (the 4th), his temp was between 96 and 98.

Also, Rich’s feet are back to normal! They look like his feet again. They don’t hurt for us to touch them. I could actually put lotion on them yesterday without it bothering him.

Rich is only getting 500mL of IV fluid a day. No more TPN. And yet, his health has significantly improved. He agreed to the bed and he’s sleeping better. As living people we all assume that we need to “keep Rich alive” as long as we can and that taking things away is giving up on him. But all that protein and sugar in the TPN was literally poisoning Rich because he couldn’t process it anymore. The fluid pooled at his feet and the sugar fed the bacteria for his infections to make them go crazy.

I was in the kitchen this morning and Rich called out to me. I walked in and he said, “I just wondered where you were.” I told him I was making bacon for breakfast and I’d give him some if he wants it. Extra crispy like he likes.

“Ooo, yeah. .... Hey, can I have a piece of toast?”
“Do you want plain toast or cinnamon raisin toast?”
“Ooo. Cinnamon raisin please.”

He ate it all, napped for a bit, and then picked up his phone to try to read messages. Look at him, all not starving to death.

Up next, we’re gonna watch “Blazing Saddles” while we wait for hockey to come on at noon. He also just asked for something else to eat for lunch. I offered strawberries.

"I will have ... one ... strawberry."

He's eaten a whole bowl so far.

Ian's second letter to Daddy

January 20, 2017 by Genie Stryker in Parenthood, Message, Cancer

I told you I would write back.

Dear Daddy. I wish you didn't have to die but that's how life works. You live awile then you pass away. Are me and Mommy aloud to come to your cerimony? Hopefully we are. As I said before I am very scared luckily you have those very helpful nurses. Mommy told me that they are going to make you confordable with dieing. Are they? Make sure to not be scared. I mean you can be scared and that's good just make sure your brave. Are you?

I really don't want you to end up like Nana. As I said before that's how life works. Maybee in 6 years half the Stryker family will be dead. Like Granddad or maybee even Uncle Lee. But let's not worry about that now. Right now we need you to feel safe and confordable with all of the new nurses. And if you want you still have the choise to go to the hospital but that's your choise. Bye-bye-dad and I love you with all of my heart and I really mean it. See you after school.

Telling your kid his dad is dying

January 19, 2017 by Genie Stryker in Cancer, Message, Parenthood

After the nurse reported that Rich was septic, he agreed to hospice yesterday. We met with the hospice nurse today. Based on his condition, she estimates he'll be with us another two to four weeks. With his sharp decline lately and the new people coming to the house, I wanted to talk to Ian about it last night.

I took him to dinner up the street and told him that Daddy's cancer was not going to get better and he would die soon. These are some of the things he said over dinner.

“Daddy isn’t going to get better. The doctor’s all agree.”
“So he’s going to have cancer for the rest of his life?”
“Yeah .... About that ... He’s not going to live for very much longer. We don’t know exactly how much longer but he’s going to die.”
"Are you going to marry somebody else? So I can get a step-dad?"

"I'm sad that Daddy is going to get killed. By cancer."

“Are they going to put him to sleep like a dog?”
“No. Vets do that to sort of push the dog that’s very sick and dying over the edge. The hospice nurses won’t push Daddy but they will keep him comfortable while he dies.”

"Is Daddy scared about dying?"

"But Daddy is young ..."

"Almost everyone in our family and friends has a disease - Feenie, Gia, you, me (his cold). Jenna is pregnant and that's kinda like a disease."

I told him in addition to the special nurses, there would be counselors if any of us wanted to talk about being sad or worried.
"I'm pretty sure Daddy isn't worried."

"I want to tell Ms. Boutwell." [his teacher]

"I'm pretty sure Daddy's friends are going to be sad. Tom! And his Dungeons and Dragons friends!"

"What if our next daddy dies?"
"Everybody dies at some point."
"No, like in middle age."
"Then we'll shop for another one."

"In how many months will Daddy die? He could die any day?"
"Yes. Probably not today or tomorrow. But the hospice nurses will help us know when."

"Hey Mommy. Can I wear a t-shirt when we go to Daddy's funeral?"
"You can wear whatever you want."
"Yay! Most people will probably be wearing tuxedos. Will it be at the same place as Nana's?"
"Yep."
"You made me wear a button shirt for Nana's funeral and I didn't like that."

"When Daddy dies are we going to still own our house?"
"Yep."

"I feel so bad for Daddy. He's so young!"

He cried a little once we got to the driveway. I asked him if he wanted to sleep with me that night and he said yes. Then he fed the dogs and we went upstairs for a bath.

I emailed his teacher this morning and she said he walked up to her and told her right away. She let him talk to the school counselor and do some writing during the day. He wrote a letter to Rich at school and happily showed it to me, Rich's dad, and the hospice nurse when he got home from school. My kid is so awesome. Everyone needs a kid to help deal with death. They really have it figured out.