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.
