We’ve been under the care of Hospice for 3 days. One day I’ll write about that more, but I can sum up Hospice intake in one word: Overwhelming. They don’t intend to overwhelm the patient or the caregiver, but it’s an impossible task. The Intake Nurse did everything in her power to make it less so. But, Thursday, the final decision for Hospice was made around 9am while Kathy was still in the hospital. We were home at 2:15pm. The nurse arrived at 2:30. It wasn’t a surprise, just a reality check. A reality check with a lot of additional decision-making and we were both, by that point, done with decisions.

The next day we met Nurse Dana, who will visit Kathy a few times a week. There have been a number of additional staff and deliveries of supplies. It is a lot of people and, if you know me well, I suck at names. It’d be easier if they all showed up with their dogs. I can always remember “Benji’s person” or “Scruffy’s Dad.” So, aside from Nurse Dana and a few new contacts in my phone, I’ve been spending time meeting The Dude Who Drops off Prescriptions, the Intake Nurse, and The Social Worker.

The days have been busy, I am so lucky to be surrounded by friends and family who will just do things. Seriously, this morning Erin made up the guest room. As I write this my sister-in-law and niece are folding some laundry. It helps so that I don’t have to spend all my waking hours in a “caretaker” role, and I get to spend as much time as possible in the role of wife with my best friend. I don’t mean to be political, but what exactly was all the fuss about a “gay agenda” that some people clutched their pearls over when it came to (finally) making same-sex marriage legal? I literally want to sit on the sofa next to my wife and watch Jeopardy and share a bowl of popcorn for dinner. I want to just sit there and say something funny enough to get a smile. That’s the agenda. Why all the hate? We just want time to love.

Off the soapbox, and on to your questions. Today I will hit the top questions I hear.

Warning: I have a tendency to say the hard stuff out loud and it can be hard to hear. No idea what’s going to come out of my mouth in the next few paragraphs. I’m trying to balance TMI vs informing friends and family. Also, in the spirit of self-preservation, I’m just going to say hard things sometimes because they are real.

How is Kathy?

Kathy is tired. She sleeps a lot and her energy is sapped by small things. She has demonstrated that she can get up and walk a short distance on her own. This I learned when I woke up at 6am to see her staggering across the room. She is wobbly. She should not do this without a net and yet… she did. She’s tired AND stubborn.  Walking is more exhausting without help. To save her energy, we rely on a “transport chair,” which is a wheelchair that is narrower (fits through doors), with smaller wheels, and needs a person to push (versus using hands on the giant wheel handles). I’d never heard of it before, either. It’s handy! I’d estimate she’s sleeping about 18 hours of the day — all through the night and frequent naps by day the 6-7 hours she is “up.” Being “up” takes energy for sitting, tracking conversation, or just repositioning on the sofa.

When talking, she talks mostly in a whisper. Low and slow. Concentrating and speaking take energy.  Focusing on content/information is hard. I was showing her a paper earlier when she said, “it’s just all running together.”

She is not in pain — at this moment, anyway. Pain is well controlled by some mild medication. We have the option to add more as needed. So far, the only time she’s needed the higher-level pain meds are due to Henry. Oh, Henry. Cats like to walk on their people. Walking on Kathy is painful. Please don’t walk on Kathy. Because of the tendency to want to sleep ON his people, Henry spends time closed in his favorite rooms in the house from time to time these days. Don’t worry, Henry is much loved and spoiled.

When Can I Visit Kathy?

Right now, it’s probably best to send her a card or note. If you need the house address, just send me and email (gina.persichini [at] gmail [dot] com). She’s asked to limit the number of visitors because each visit takes a lot of energy and she has a limited supply. If you would like to reach out for a visit, please contact me. If you don’t have my cell #, try the email shared above. Every request is run by Kathy. If we decline a request to visit, it is NOT about you. It is about her available energy. I can’t stress enough how fatigued she is.

If you are planning to come by, there is a chance it could get changed or canceled depending on how she feels.

She gets your texts and email. I am reading them to her. Focusing on the screen is harder, seeing the buttons to text is very difficult with tired and watery eyes.

How Can You Help?

I’ll start with the “no thanks” items.

• Please avoid food. We have been blessed by our generous friends and family and have an abundance of food. Kathy does not eat much and I hate seeing things go to waste. If you bring food, you are primarily feeding me and I really am just 1 person. I’m not saying that chocolate cake isn’t a dream breakfast, but I need to take care of myself to take care of Kathy.
• No flowers or greenery unless they can be kept or planted outside. Have you met our kitty Henry? Henry hasn’t found plant life he’s not willing to eat. Unfortunately, he throws it up afterward. I don’t want to clean up cat puke. Balloons are nice, though. Two little boys in the neighborhood brought her a balloon. I don’t know about Kathy, but I smile whenever I see it.

What’s helpful?

• Door Dash. She hardly eats, but when she does her interest in food varies. We are trying to get something that she wants at a particular time. If she were to say, “I wish we had some sushi,” we can make that happen with a Door Dash. By the way, she will never, ever utter those words. She’s a hard “no” on sushi.
• Cards and notes. You can mail them or drop them off. Email works, too. I read her the emails and text messages that are sent. The love being sent her way is amazing and it just fills the soul. If you need a contact or address, PM me somehow and I’ll get it to you.
• Random Needs. Every day is different. Sometimes what helps is just the everyday stuff that you remember you have to do. If someone is around, I’m getting more used to asking for help with those things. The trouble is, I often don’t know them until the need arises. So maybe I’ll get something up on social media or send out a text at some point when I know what it is I need. Trust me, someone is going to have to teach me how to run our sprinkler system one day. That could be you. 😉

No, Really, How Can I Help?

Pancreatic Cancer sucks. It’s a big ol’ nasty, unpredictable bitch of a disease. We don’t know enough about it and there are way too many stories like Kathy’s. Someone is fine and biking 40 miles a day and 10 days later they have a pain, a diagnosis, and a Hospice team. It’s wretched. You can help by helping the researchers and getting money into the hands that need it. I asked a member of the Oncology team if I won the lotto tomorrow, where should I put the money to stop this disease or make it better for the future? She said PanCan.org.

There’s a Purple Stride Walk in Boise on Saturday, April 27th, in Ann Morrison Park. You can:
1. Join Team KathyPlan. Walk with the team at Noon or just join the event celebration that begins at 10:30am in the park. or

2. Donate to our Team. Let’s do what we can to help researchers learn what they need to conquer Pancreatic Cancer.