Dr. Martin Weiser and the team at Memorial Sloan-Kettering. Just a little corny award season humor. We need some humor right now. Today kinda knocked us on our asses. The consult with Dr. Weiser was not exactly what we were expecting though not much is substantially different.
We got hit with some information we hadn't prepared for previously. New terms, new protocols, new time lines and new statistics were hurdled at us at lightning speed. There was barely time to breathe. So let's pause and all take a few cleansing breaths right now. In...and out. In...and out. And one more, in...and out. Ohmmmmm. Seriously people, I need you to help me stay in the moment.
Ah, the power of now. It's sometimes doesn't seem as powerful as the power of fear. Fear is real and gripping and contracting and feels like shit. I'm definitely writing about my own experience right now. Nathan will have to let you know exactly what his reactions were but we both agreed that it felt like hearing the diagnosis for the first time all over again.
So why Dr. Weiser and MSK then, right? I mean this doesn't sound like the "Positive Attitude Polly" from the first post. Well, a reality check doesn't always feel great but as they say knowledge is power. Having all the cards laid (or is it lain-any Marymount friends care to correct me?) out for us was shocking but we feel like now we know what we are dealing with for sure. There were some other considerations as well.
It just so happened that Nathan had to go the Beth Israel today to pick up his pathology slides to bring to the consult. Having just been there, the contrast of the physical facilities was stark. Whereas BI seemed run down, depressing and institutional, MSK was almost spa like. The first waiting room we were in had a wall of orchids and a waterfall. That may seem like a superficial consideration but Nathan will have to go for radiation every day for 5 1/2 weeks. You don't have a be genius to know that your environment plays a role in your attitude and your attitude plays a role in your odds of successfully beating the illness. Nathan said something like, "Here the people seem well where as at Beth Israel they seemed sick." It's strange because it's MSK. It's a cancer facility. All the people are there because they have cancer. But the feel of the place is wellness. And if there is a feeling of wellness, chances are, as a patient you are more likely to get well.
In terms of treatment, we were impressed with the how quickly Dr. Weiser wants to start. And when I say quickly, I mean this Friday. He's not screwing around and we all hope that by starting sooner Nathan will begin to experience some relief from the symptoms which only get worse every day.
Here's how the consultation with Dr. Weiser played out. After a brief physical exam we met in the consultation room. Dr. Weiser told us that the MRI scans from Sunday were of excellent quality and he determined that indeed there was local lymph node involvement. Having also reviewed the pathology slides, cat scan images and colonoscopy report, he, too, classified the cancer as stage 3. So far so good. We expected all of that. Then he pulled out an illustration of a healthy colon and drew the tumor and lymph nodes. His tumor was much bigger than the one Dr. Martz had drawn and he called it big or huge or ginormous, I'm not sure which but what we heard and saw seemed worse than the tumor we had gotten to know with Dr. Martz. Now here's where we should have started to breathe but alas were just beginning our descent down the rabbit hole and are still getting our bearings.
Dr. Weiser then talked about protocol options. Standard care for rectal cancer is exactly what the team at Beth Israel had suggested. First, a combo of chemo and radiation for 5 1/2 weeks, then a break for approximately 6 weeks, then surgery, then a break for 4-6 weeks and then chemo again. One of the shockers though was that the chemo after surgery would be 4 MONTHS! Team BI never told us how long that chemo round would be. It totally blew our minds. Whereas we thought Nathan would be done by June now we were well into late summer/early fall. The marathon we were preparing for now looked more like an Iron Man. Then Dr. Weiser presented a second option which is more aggressive but that they are starting to see has a greater prophylactic benefit and slightly shortens the overall time line. This second option moves the round of the chemo that normally happens after surgery to first position. So it would be chemo, chemo-radiation, break, surgery, break and maybe a short round of chemo depending on the body's response.
He said if it were him he would go with the more aggressive second option because Nathan is young and healthy otherwise and should be able to tolerate the therapy well. That's when some statistics got thrown around that I had some how missed last week. Part of the thinking behind the exclusive high dose chemo first would be to kill any cancerous cells in his body that they can't detect with scans at this moment. Apparently, with rectal cancers of this stage, there is a 40% chance of recurrence at a different site such as the lungs or the liver. Ay yay yay. My brain had conveniently confused a conversation we had with Dr. Martz
Then he mentioned an ileostomy bag. By the way, I had to look up the word ileostomy because I neither knew how to spell it nor what it meant but it was accompanied by the word bag and that was a huge red flag. We had heard of colostomy bag and Dr. Martz specifically said Nathan would not need one. I remember that part of the conversation distinctly because it was one of those moments when we both realized there were consequences of this particular cancer we hadn't had time to consider. With a brand new diagnosis, it's hard to even conceive of all of the implications other than the obvious fatalistic ones, but there are a ton of life-long after effects that only start to get discussed in a doctor's office and you have to try to process them as quickly as possible and hope your jaw doesn't make too loud of a thud as it hits the floor.
When we probed further and said that Dr. Martz had said Nathan wouldn't need a colostomy bag, Dr. Weiser said, "Right, not a colostomy bag, an ileostomy bag." REALLY MAN! WTF is the difference? Bag...I'm hearing bag and I'm guessing they'll be poop in that bag. And I'm the mom in the family so I change poopie diapers so I bet I'll be changing poopie bags now too for the next 50 years. Sorry-internal panic attack. I look to my right and Nathan is getting visibly upset. Screw the poop bag, I would do anything for this man. Let's not forget his plumbing duties with me and my "broken vagina" after Sadie's birth. It's only fair.
As he explains further, it will most likely only be after the surgery that he will need an ileostomy bag so that the colon can properly heal. The surgery will remove the lower portion of the colon and the upper part of the rectum and reattach to the two ends. Therefore, "bowel function will be erratic as the the colon learns to behave like a rectum." You know how it goes, first few weeks on the job, there's a natural learning curve. Anyway, during that time they don't want any stool to leak into the area around the rectum because it will harden like cement and then there could be permanent loss of bowel function. Repeat panic attack. Permanent loss. Another bad phrase but hey now ileostomy bag has a certain ring to it. He goes on to explain that the ileostomy bags are very discreet, can be worn under normal clothes without being visible and won't need any help caring for them. Of course, I googled "ileostomy bag" and truthfully it doesn't seem all that bad especially as a temporary measure.
Then we move on to sexual function and sperm donation. The tumor is right next to the nerves that control sexual function. In 20% of patients, there is some permanent dysfunction but that drops to 5% when there is successful shrinkage of the tumor from the chemo and radiation. Another reason to opt for the chemo and radiation.
Since Dr. Weiser said he could get us in to see the medical oncologist, Dr. Neil Segal, on Friday to start the chemo that day, we have to hurry up and make a sperm donation Wednesday or Thursday and when I say we obviously I mean Nathan does. We still have not figured out if there is a second child in our future but we both agree that we rather be safe than sorry so off it's off to the sperm bank. The upside is we may be able to get the fee waived or discounted because we are having to bank the sperm out of medical necessity. There's an organization called Fertile Hope that is a "LIVESTRONG initiative dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility." Sperm banking is an aspect of this treatment that isn't covered by insurance so Fertile Hope may help.
Lastly, Dr. Weiser said we could work to incorporate other therapies like acupuncture and massage into the protocol but similar to Dr. Hu he did not want Nathan taking an herbs or supplements during treatment because they have found it can adversely affect the success of the chemo and/or radiation. Unlike Dr. Hu though we felt like he gave better dietary/nutrition recommendations. He said Nathan should keep his diet simple and avoid raw fruits and vegetables because of they would be difficult to digest but that he could "juice" these foods so he continues to get all the vitamins and minerals he needs to keep himself healthy.
When the consultation was over, Nurse Julie Minihane sat down with us and gave us the run down of next steps. She was definitely the warm and fuzzy team member. Nathan had to get blood work and an EKG done immediately so they could have everything ready for him on Friday. There won't be time for him to have a port put in his chest by Friday so his first chemo treatment will be administered via a pill.
I know this has been a VERY long post. I'm wrapping it up now but not before thanking our cousin, Drew Bianchi, M.D. He showed up just hours after Nathan's diagnosis last week to sit in our consultation with Dr. Martz and also came to the appointments with Dr. Hu and Dr. Weiser. He has been asking the more probing medical questions and giving us his best advice. It has been a great comfort to us to have him as our health advocate. Thank you, Drew. We love you and greatly appreciate all that you have done for us. There are many others to thank who have made this process much easier than it might have been but that will be it's own post.