I met with the surgeon today.
Things to discuss – the group watching the exam today. “Max Power, inflating the balloon, the 22 year old woman” Talking with Robert – how he helped tara, the cost of chemo, taking the time for one’s self. How good it feels to talk to someone with the same experience. Talking with Lev about talking to Chris. Talking to Curtis. Talking to Lisa. The overwhelming sense of giving and caring from those around me. Robert’s discussion about some people being afraid to talk to him, and others wanting to know everything… Shelly helping out – the girl down in the cancer IFL helping out
Medically: 5 weeks of Chemo/radiation, 5 weeks of recovery, surgery (removing 10 inches – the entire rectum, but they will be able to hook it back together! Yeah!!!!) , 5 more weeks of Chemo/radiation, second surgery at 6 months post-op, so I can finally go to the bathroom w/out a bag again. Possible impotence (5-10%), definite sterility. Possible IBD, leakage, etc…
Ok – all of this is written months later (post chemo, post radiation). I find it interesting that I couldn’t write any of this earlier. This day was an incredibly rough one in so many ways. Meeting the surgeon (Dr. Sklow) and facing the reality of this was a rough rough ride. I’m leaving the initial writing because I think there is something important about it, about the fact that I couldn’t address it in a deeper fashion until later. So here goes with the explanatory version:
When I went into Huntsman I was nervous as hell. I gave myself an enema in preparation, and anyone who has done that knows that it is entirely possible to be completely embarrassed all alone. There are little drawings on the outside of the bottle on how to do it, but it is an awkward, awkward, embarrassing procedure. Of course, this is coming from someone who thought buying it was embarrassing, so take it for what it’s worth. Anyway, the enema is a hell of a lot better than prep for the colonoscopy, so that’s how I choose to approach it.
I first got into the room and they gave me a sheaf of forms to fill out (the first of many times I would recite the litany of my medical history), I found it funny that I felt the need to be scrupulously truthful when answering the drugs/drinking questions (yes I smoked weed a few times in college), its amazing what the worry that it may effect your cancer treatment can do for your concern about what people may think of you.
After I’d filled out the forms, I was interviewed by a resident. As she got toward the end of the questions, she looked at me and asked if I was from Logan. “Oh God” I thought, “this can’t go anywhere good.”
“Yes.”
“Do you have a brother named Lev?”
“Yes.”
“Wow, he’s like best friends with my brother.”
‘Wonderful’ I thought – just what I want, the person who will, within the next couple of minutes, be looking up my ass, has a brother who is best friends with mine. ‘Well this doesn’t make it awkward at all now, does it?’
“Huh.” is all I said.
After the interview was done, Tara and I sat and talked in the waiting room for a while (I filled out some more forms regarding my anxiety level – I think I rated it as the highest possible one on there), then a really young girl came back to take me back to the exam room for the probe.
Wow. I’m not even sure where to begin with this one. Do I start with the fact that the cute young girl that showed me back to the room then asked me to drop my pants and kneel on a padded contraption that resembled the chair for curls at the gym (This would soon lift me up and rotate me to present the best possible…access...for the surgeon.)? Do I start with the sheer number of people in the room (5 by the way, 4 women and 1 man…it’s a teaching hospital)? Or do I start with the complete and utter embarrassment that this provided me?
Throughout the examination, the probe, the ultrasound, the inflated balloons (there are entirely too many things that they poke and prod up your ass), the pictures and the half-heard discussion behind me, I tried to keep up a conversation, and you wouldn’t believe how hard it is to find things to discuss when people are repeatedly shoving things into you and asking if you are “ok”. Really? I’ve just been diagnosed with cancer, I’m on display to half of the student body of the University Hospital, you are sticking metal things entirely too far inside of me, and you’re asking if I’m ok?
Of course my reply was “Fine….considering the situation I’m in.”
I’ll tell two quick anecdotes from the examination – the first was the “Maximum Power” incident. I am laying there, arms bent over the cushion as they are starting to stick things in me, trying to figure out how to make small talk with the cute girl that walked me in (and who is standing next to me now, looking like she would much rather be anywhere else*), when the surgeon says “Can you turn that up to Maximum Power?”
My face drained of blood and I said very slowly and clearly, “You realize that is almost the worst possible thing that a person in my position can hear, right?”
Everyone started laughing, and the doctor immediately clarified “No, it’s just the light – it’s kind of dark in there.”
I replied “Yeah, I’ve heard even the sun don’t shine there.”
One of the things I learned during this is that the cancer doctors build a definite wall between you and them. Dr. Sklow was blunt as hell: In the midst of shoving things up me he asked if I had kids, and if I was planning on having more, when I said that I did have two and I wasn’t planning on more, he replied “Good. The radiation will make you sterile.” I’ve actually had a vasectomy, and that still hit me like a ton of bricks. How would someone who was hoping to have more feel?
It’s amazing how tough it is to have small talk when people are doing a probe like that, and, looking back on it, it’s amazing how hard I tried. I spoke about having a better understanding of what my wife went through each time she gave birth, I told them that this would make a hell of a picture for the yearly Christmas/Hannukah card, and I tried not to picture some sort of birthday party gone horribly wrong as they told me they were inflating a balloon in order to get a better picture inside.
I really didn’t enjoy the wrap up after the probe and ultrasound – it was a rough rough discussion. As I said before, Dr. Sklow was blunt as hell about everything, and he gave me the breakdown pretty quickly: 5 weeks of chemo and radiation, then 5 weeks of recovery. Surgery, but there was good news here, the previous doctor (the one who had performed the colonoscopy, the one who told me that I would spend the rest of my life with a bag), turned out to be an idiot. He didn’t have the positioning or the location of the tumor correct. It turns out it was a few more centimeters in that he had said, and that meant that Dr. Sklow could hook me back together. I’ll spend six months with a bag, but not the rest of my life – a small victory in a huge pile of crap. After this good news we went back to the bad – I’d have 5 more weeks of chemo and radiation after the surgery, then 6 months with the colostomy bag, after which I’d have a second surgery to repair the illeostomy (the opening in my side where the intestine empties into the bag).
In addition to this, he didn’t know the side effects the surgery will have (they’ll be taking out the entire rectum (10-12 inches) no matter what the chemo/radiation does – even if it disappears entirely. This might result in IBS (irritable bowel syndrome), leakage (yes, leakage), additional bowel movements, and the kicker, possible impotence – yes a 5-10% chance. As I said before – how much worse does this get? Every time it seems like it can’t get worse, it seems to be determined to show me that I don’t know what the hell I’m talking about.
It was an experience – one I really don’t recommend, but an experience nonetheless.
There were two really bright spots in the day: Shelly, and the girl down in the learning center. Shelly is someone who was assigned to help me out and answer any questions I had. She walked along a little ways with us and just offered to help out any way she could – she gave me a number to reach her at, and answered the phone and my questions as I called her back throughout the day. Having a little of that human touch while trying to assimilate everything that is coming at me was a great thing. When Tara and I went down to the learning center, the girl behind the desk was great – compassionate, calm, understanding, and she helped us find all the books and information we needed. It was sorely needed.
I spent some time talking with Robert (another person at ARUP that was recently diagnosed with cancer – he had a grand mal seizure on December 31st, and they found a brain tumor). He is a great guy, and it was an amazing feeling to be able to talk with someone else about what I’m going through. I know he didn’t ask for it, but I came out and unloaded everything, and he listened and told me what he was going through as well. It was great to be able to talk to someone that I knew understood. He talked a bit about taking time for myself, that this is a huge thing to deal with, and to remember that I need to do that, that I need to take time to process it. He also encouraged me to check on the cost of my chemo – that it is costing him thousands of dollars, and he is having to go on a payment plan just to get through the first round of chemo. It was after I spoke with him that he did the most amazing thing. He went over to Tara (the two of them work together), and he offered his help to her in any way possible. Here is a guy that is in the midst of dealing with brain cancer, and he is taking time to offer his help. The ability for compassion, the strength to help others in the midst of personal tragedy, it amazes and humbles me. I hope that I can remember this in my life. Robert also talked a bit about how people treat you – some want to help (and he said to take this – take the help where you can, because you will need it), some want to know all the details, and some are afraid to talk to you about it, afraid to even talk with you at all after they hear about it. He says you learn a lot about people from how they react.
In the time since then I’ve learned how true that is, and more importantly, I’ve learned not to be offended when people don’t handle the news well. I think that telling people information like this seems to create a kind of expectation or obligation, much the same way that giving a gift creates an obligation – and I can’t hold people accountable when it came unasked for and unexpected.
The other conversations that I had today: Lisa (a division manager at ARUP), who is blunt, straightforward, and with a strong medical background. She overheard me talking to Robert, and came over to say how sorry she was, but how I was going to kick cancer’s ass, and she was there to help out in any way possible. It was great to talk to someone who wasn’t afraid of it, afraid of talking about it being colo-rectal cancer (in fact, I believe she was one of the first people that wasn’t family that I told it was straight up rectal cancer). She was incredibly matter-of-fact about it, and very genuine. I also spoke with Curtis, the guy that reports to me and directly supervises my trainers. It took him by surprise, and hit him pretty hard. I was quite surprised about how hard it seemed to hit him. He talked about how happy he was that he didn’t get the other job that he applied for because he wanted to be around to help during this time.
You never know who cares about you….
*I’m sure I had the same goddamn look on my face.
