Staying on schedule

"But I wanna go to the store with you to fix Daddy's belly!" Today, I started trying to explain to Ian all the things that will be going on in the next few weeks. This is hard for a three year old. Honestly, it's hard for a 42 year old too. A common joke between Rich and me is telling him, "you lost a weekend, baby" as we plan out our trips.

Anything that happened in the past happened yesterday as far as Ian is concerned. And anything in the future happens on Tuesday. Trying to get him to understand that Halloween is this week and so is Mommy's airplane trip but our friends aren't coming to visit until the next week has his head reeling a bit. I'm also trying to get Ian familiar with the tentative schedule for what we'll be doing all day. Ian will spend the day with Nana and Granddad while Mommy helps Daddy with his belly.

"Mommy's going on a plane ride later this week." "And I'm staying home alone?!" "No, Daddy will still be here. And Mommy will only be gone for one night and then we have all weekend to play." "Like today?" "Well, sorta like today, only with less wind and rain hopefully."

"I don't want to go to Baltimore with Nana and Granddad." "Because you want to be with Mommy and Daddy?" "Uh huh. I don't want you to go without me." "This time we're all going together. Mommy will need to help Daddy some during the day, but that's when you can play with Nana and Granddad. And we'll always have bedtime together every night." "Daddy too?" "Well, Daddy will have to stay in the hospital for a bit while his belly gets better but we can talk to him on the phone and the iPad. And then we'll all go home together."

Going with our gut

I'm a little weary but I still want to get all this information noted. Tuesday we went to see Dr. Hanna. The short version is that Dr. Hanna said there is a lot of mucus in Rich's abdomen but that it seems to be mostly mucus and that is good. He said that in the end, we have to choose a surgeon that we trust to make good decisions on the operating table because CT scans really only tell part of the story and we won't really know what will have to happen until they're in there looking around.

We scheduled a surgery date with Dr. Hanna and left feeling good. I rejoiced that I finally had my husband back versus the agonizing ball of angst that I've been living with the last month or so. We decided to keep our appointment with Dr. Sardi so that we could compare information and make a well-informed decision. We equated it to test driving a car but not buying it until we had at least test driven another car.

So today we went to see Dr. Sardi. His physician assistant was very nice and his assistant was also quite good. And Dr. Sardi was not bad, per se. But we just didn't feel right. You know how sometimes when someone knows too much about something, they give too much information that just ends up confusing you? That was our talk with Dr. Sardi. It's much like trying to ask Mr. Smith for directions on how to get downtown, "Ok, you know where the construction is on 295 and it goes to 1 lane and then there's the exit that comes up fast? And then you have to loop around to get gas and then make a left to get back on the interstate and take your life in your hands? Yeah, ok, that's not the way you're gonna go, so ignore that." GAH!

It's one thing when Mr. Smith can't tell me how to get to the damn Smithsonian in 500 words or less, but it's another thing entirely when a doctor is rambling about colostomies and follow up chemo and taking out lots of other organs and then randomly says "oh, but we rarely do that so we might not have to for you." GAH!

We walked out of the appointment in silence and once we got to the car, we just sat there in the parking garage, staring outside. Rich asked hesitantly, "So, are you not optimistic anymore?" And I wasn't sure what to say. I certainly wasn't stoked. We moped our way out of the city and into I-95 traffic. I texted a few people. I mourned the brief reunion with my happy husband as he now looked very haggard again.

But then we started talking. Both surgeons talked about the unknown. Both surgeons have a lot of experience with this procedure. Dr. Hanna was just so much easier to talk to. I felt part of a winning team after leaving his office and for the first time in forever, Rich was optimistic (if cautiously). And after looking at CT scans with Dr. Sardi today I just felt stupid and confused.

It may sound strange to pick a surgeon based on how you feel, but we both just felt better with Hanna. This sounds very new age, but I just felt a lot of negativity in Sardi's office. Not by him necessarily or his staff, but something just set me on edge. When we talk about making decisions during childbirth, we always talk about trusting our intuition. And my flight reflexes were on high alert the entire time we were in Sardi's office. In contrast, we played cards waiting for bloodwork at Hanna's office. It's very hard to quantify, but it was strong.

So we have chosen Dr. Hanna as Rich's surgeon. The surgery is scheduled for Monday, November 12 at 7:30am. This means we'll be going to Marinus Investiture to be invested on Saturday, driving to Maryland on Sunday first thing in the morning, processing the "colon blow" potion they give Rich pre-surgery and then driving into the city Monday morning at dawn. I know it sounds crazy, but it sounds very doable to us.

I do have a few visual aids for those following along from home. The first picture is a side view of Rich's torso. It doesn't look that strange, other than there is a dense section in the middle part of his belly. That's all slime. I colored it for your convenience.

The second picture is a cross-section of Rich's torso, from the thicker part of said slime, maybe where his sternum stops. The orientation is as if he were lying on his back, you were at his feet and looking up his nose. His spine is on the bottom and the part on our right looking at it is actually his left. That big slimy section at the top is all mucus. So yeah, there's a lot of slime in there, but it's been "hidden" by the fact it's so high in Rich's torso and he has a very barrel chest. Also, being 6'5" he has a lot of real estate in his torso for things to get mushed and still function.

Today was a rough day. But we're both feeling better and have a game plan. I really liked Dr. Hanna and I just keep thinking about how calm Rich felt after meeting with him. It was the closest I've seen him to believing me when I tell him everything is going to be okay.

And, besides, the wifi is WAY better at Dr. Hanna's office than Dr. Sardi's.

Having perspective

I've been finding actual people who have been through the HIPEC procedure that Rich will most likely have. That has been interesting to say the least. We were feeling pretty good about our choices for doctors in Baltimore. One is the department head at University of Maryland Cancer Center and the other is the department head at Mercy Hospital. We are unable to have Dr. Sugarbaker do Rich's surgery because as he said, he is 80 and not able to stand in an operating room for over 12 hours. Kudos for honesty. But Dr. Sugarbaker recommended four different physicians and we're meeting with two of them next week. If we can't have the dude who invented the treatment, we can at least have someone he trusts and mentored.

My cousin put me in touch with a friend who had the HIPEC treatment four years ago. This friend said in an email, "it was the worst thing imaginable." Seriously? Have you been in cahoots with Dr. Sunshine? Reading that email upset me more than I thought it would. Was I undervaluing the severity of this whole thing? Was I being foolishly optimistic? Glib, even?

I reached out to the friend in an email, asking for details. She wrote back with more information and contact info for another friend that also had the HIPEC treatment. In reference to this "nightmare" she added, "all in all, it is horrific." Jesus, is she talking about the same procedure I've been googling?

A few more emails with both of these patients, one who was treated in Pittsburgh and one who was treated in Baltimore and I'm learning more about what "horrific" means. Both women said they spent nine days in the hospital. Both women said they spent another week to 10 days with family/friends recovering further before traveling home. I was prepared for two weeks in the hospital and another two weeks in friends' care so this was actually very good news to me.

And that's when I decided I didn't really need their input so much anymore. Their experiences don't apply to us other than Rich will have a similar surgical procedure.

Rich worked with a guy who used to be a military medic but later worked in IT at Philip Morris. The guy complained that he would get phone calls from staff saying they had an "emergency" only to discover an executive could not get to his email. Mr. medic would tell Rich, "an emergency to me is a sucking chest wound, not an error in Outlook. These people need some perspective."

My definition of horrific? The Congo rape crisis. The Holocaust. John McCain spending five and a half years in a tiger cage as a prisoner of war. But when I asked if the side effects were similar between systemic (intravenous) and intra-peritoneal (sloshing fluid in your belly) chemotherapy, the answer was that Rich's belly kind was "no hair loss or nausea. Just yucky feeling."

Nine days in the hospital and feeling yucky does not a nightmare make, in my book. So in many ways these other patients have reaffirmed my optimistic outlook. I'm grateful for them sharing their perspectives because it's helped me solidify mine.

Rich and I have a joke that stems from my nosy neighbor open house when we moved to this home. I made flyers and put out a big sign on the porch and prepared for an afternoon of neighbors coming by to see our home. Rich wanted to protect me from getting my feelings hurt, so he sat me down and said, "not everyone is like you, Genie. People might not want to come look in a stranger's home." And we proceeded to have a steady stream of traffic from nosy neighbors all afternoon as a great introduction to the street.

So again, not everyone is like me. They have very different definitions of what an awful situation is. But that's not how I was raised and it's not how I'm wired. This will be a hassle and it will be stressful and it will be rough. But we will be fine. I know it. And if I say it enough times, everyone else will figure that out too.

green slime support ribbon gifted to me by Amy, who rocks