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

My husband has cancer

"Horrible situation."

The doctor actually wrote that in Rich's medical chart. Who the hell does that? We've found that doctor to be a little melodramatic, though, so we're taking Dr. Sunshine's comments with a grain of salt.

Let me back up; you're probably all reeling from that first part.

I had to go to Cornell on a business trip at the end of August. I got home Friday night in time for Rich to leave for an evening with the guys. When he came home after midnight and we were all snuggled in bed, he asked into the darkness, "How awake are you?" Oh, geez, it's gonna be one of those discussions.

He had found a small lump just below his sternum, maybe the size of your last thumb digit. He was lying in bed staring at the ceiling and not sleeping because of a lump. Sigh. So I spent an hour telling him it was probably just a cyst since he's prone to those on his chest and he can get it checked out. He went to the urgent care the next day and ended up with a prescription for cipro for a mild infection (which he's prone to) and directions to follow up with his regular doctor. I thought he would feel better, but he was still very anxious.

The next week, Rich went to his doctor - Dr. K (his full name is long and Indian and unpronounceable so everyone calls him Dr. K). The doctor was very thorough and ordered both an ultrasound and a CT scan as well as blood work to look for elevated white blood cell counts etc. I thought all this sounded like a big fuss over a cyst but Rich was anxious.

The ultrasound on September 17 didn't show much, but he went for his CT scan on September 28. The following week Dr. K wanted to meet with him before he sent him for a surgical consult. We assumed this was all over how to break up this fatty cyst on his torso.

Thursday, October 4, Rich went for his surgical consult. I was at work still when he called very distraught and said the doctor thought it was cancer but they wanted to biopsy. Thought what was cancer? This cyst thing? I headed to the office to hold his hand while they did a biopsy right then. Everything was very quick and confusing and Dr. Sunshine was looking grim. Dr. Sunshine (not his real name) was dancing around the "if we think this is what it is" topic and saying "well, we'll start with the first biopsy because it's easy and close to the surface, but we'll keep looking." Looking for what? Rich was the only one who had actually said the word cancer so far and he thinks everything is cancer so I was still very confused.

We waited to hear biopsy results. The next day, I instructed Rich to call someone and get a prescription for anxiety medication because he didn't sleep at all the night before and was following me around the house. We picked up his prescription for Xanax and he actually slept. We went to Coronation that weekend and he stayed busy. We waited for Monday.

Monday he got news at the very end of the day that his biopsy is negative. Hooray! Rich was somewhat relieved but still apprehensive. Dr. Sunshine wanted to talk to him the following morning with more information. Um, ok. Tuesday the 9th, Dr. Sunshine called him and says they're scheduling a second biopsy for Friday, this time CT scan guided to go deeper.

Let me explain. The CT scan they did of Rich's entire abdomen showed a cyst up near his sternum. But it also showed this "slime" around his appendix and additional pockets of slime throughout his abdomen. What I didn't understand at first but later figured out was Dr. Sunshine felt very positive that this slime was indicative of cancer. So they went "cancer hunting" and did the first biopsy to try to get a diagnosis. That came back cancer-free, but they were undeterred. They then wanted to do the second biopsy to get a sample of some of that slime deeper down. Dr. Sunshine felt certain that would come back as malignant, but I was always told that one shouldn't script so I was just going to wait for a test result.

Rich, however, was even more of a mess. We talked to the doctor Tuesday night to get more details. Dr. Sunshine was his usual cautious and apprehensive self. I get that he can't tell Rich everything is going to be okay because he's not his wife, but he could at least be a little less "death's door" about the whole thing. After a long phone call that evening, Rich hung up with Dr. Sunshine and told me, "I'm gonna fuckin' die. He had nothing good to tell me. He said things like serious surgery and months of chemo and long road ahead. Jesus Christ, I'm gonna die." So that was our Tuesday.

We muddled through until the biopsy on Friday. The nurses were exemplary, to the point of feeding me to fix my low blood sugar while I waited on Rich. We waited for the results but Rich had resigned himself that it was cancerous based off of Dr. Sunshine's behavior. The good news is we did a fair amount of homework on the Internet between Tuesday night and the weekend and were starting to put the pieces together.

Monday afternoon, Dr. Sunshine called and said the biopsy of the slime was malignant. We have DVDs of his CT scan and copies of his record that we're now sending to doctors all over the east coast. There is a local doctor but he's only done the surgery five times and we'd rather go somewhere that has a bit more experience. At the moment we have two consultations scheduled next week in Baltimore.

What exactly does Rich have? Let's go through some medical mumbo jumbo. The cyst near his sternum is just a fatty cyst. No biggie. But that false alarm led to the CT scan which brought the slime to our attention. So hooray decoy cyst! Most people don't notice this slime until it surrounds an organ to the point it doesn't work anymore or until your belly swells so much you can no longer attribute it to cheeseburgers. So we gained a lot of ground there.

Rich doesn't actually have appendix cancer, even though there is slime on his appendix. He has peritoneal surface malignancy or peritoneal carcinomatosis, which is a fancy term for cancerous belly slime. Don't ask me what color the ribbon is for that. I say we go with lime green, a la Ghostbusters. The slime usually picks an organ to hang out around and we lucked out that it picked a relatively decorative organ in Rich's case. Once it sets up shop, it starts growing more slime and that spreads around in a slimy fashion all through one's abdomen.

So the first obvious step is to perform a "slime-ectomy" and get rid of all that crud (along with his appendix). However, making sure every last piece of slime is removed is a lot like dropping a handful of rice and hoping you found every grain, only these grains are cancer cells. Once the doctors have removed all the slime they can find (and that takes several hours of surgery where they cut you wide open and root around in your guts), the next step is to perform chemotherapy. This is a special kind, though, that is a heated liquid that surrounds all the organs. The doctors hook you up to a pump and cycle two liters of heated potent chemotherapy juice into your belly for 90 minutes. During those 90 minutes, they "jostle" your torso to make sure everything gets good and coated. Then they drain the whole thing and stitch you back up.

The good news is there is usually no need for additional chemotherapy treatment. This means that the side effects are much lower than with traditional intravenous treatment. It also means that we just have to make it through one hellish 12+ hour surgery/chemo event and then weeks of regaining stomach muscle usage after being cut stem to stern. But after that, we all go on with our lives.

We are unsure how soon the surgery would be. It could be as soon as three weeks from now or it could be closer to Christmas, depending on the surgeons' schedules.

Rich is having a hard time, but we're hanging in there. He's anxious and depressed and is not good at being a patient. But we have a plan and we caught this extremely early and he is otherwise very healthy. I am also the world's most optimistic person, so I have been the Chancellor of Optimism through all of this. I really do need a silk sash or something.

As of today, we plan to be near Baltimore having and recovering from surgery for about a month. I can only imagine it will be all three of us, including Ian, so we have to sort that out. The surgery takes all day and then there are three weeks of recovery in the hospital. But then it's just regaining muscle tone and getting back to normal life. No months of chemo, no radiation, no major body parts being cut off. All in all, not so horrible (despite Dr. Sunshine's initial appraisal).

For the curious, you can read more about the Peritoneal Surface Malignancy Program as well as the HIPEC heated chemotherapy (complete with SIMS surgery video). There's also this video of a crazy cat lady who waited until she was big as a house, had the surgery and was back to work in two months.

We are not rending garments or gnashing teeth or full of woe. Well, Rich may have done that for a few hours, but I don't cotton to that so he has been basking in the warm glow of my unwavering optimism. It's kind of like heated chemotherapy, only with more smooches. This is the first of many updates as we keep you all up to date. Writing through things, much like sharing everything, is how I roll.