And the Tumor goes to...

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.

Signing off,
E

WHAT??????!!!!!!!!

Valentine's Day this year was a rough one for the Bonds. If we haven't had the chance to tell you personally yet, Nathan has been diagnosed with colo-rectal cancer. Being diagnosed with any form of cancer at any stage is always scary but we have been given a lot of hope by the doctors and will be focusing on that as we move forward on this path of healing.

Here's what we've learned so far. During the colonoscopy, Dr. Jason Bratcher observed a large tumor in the rectum. Coincidentally, Dr. Joseph Martz, the Chief of Colo-rectal Surgery at Beth Israel Hospital happened to be completing his morning rounds and Dr. Bratcher asked Dr. Martz to look at his findings while the procedure was in progress. Dr. Martz concurred with Dr. Bratcher's diagnosis that they had found a probable rectal adenocarcinoma.

Since then we have gotten the pathology reports from the biopsies taken during the colonoscopy and have confirmed that it is a malignant tumor. Nathan has also taken a chest CT and the results show that the cancer has not spread to any other organs.

From the cat scan of the abdomen that was taken the week prior, the colonoscopy and the ultrasound, the doctors suspect a stage 3 cancer. The MRI on Sunday, the 20th, will confirm whether or not there is any local lymph node involvement. It still will not give us exact staging but it will determine the final recommendation for treatment.

We have been working with Dr. Martz and his colleagues at Beth Israel. Yesterday we met with Dr. Kenneth Hu, the radiation oncologist. He explained the course of treatment they were considering for Nathan's case. Originally, Dr. Martz had told us to expect 5 weeks of chemo & radiation concurrently, then 5-6 weeks of rest and finally surgical removal of the tumor and lymph nodes. However, yesterday, Dr. Hu tacked on a round of chemo after the surgery. We were certainly disappointed to hear that because it obviously extends the time frame before we are done with treatment. However, nothing is set in stone yet.

While the team at Beth Israel has been wonderful thus far we want to be on the safe side are seeking a second opinion at Memorial Sloan-Kettering next week. Dr. Marty Weiser of the colo-rectal team at Sloan was highly recommended to us by four separate individuals so we look forward to hearing his thoughts and also evaluating the facilities.

We realize that our first priority is finding the best surgeon. It has to be someone who specializes in rectal cancer because there are so many considerations when operating on that part of the body. However, we also want to consider the facilities because the radiation treatment requires attendance every day for 5 weeks. If it all possible, we want an environment that, if not cheerful, is not downright depressing.

Since this diagnosis, everyone has jumped on board with love, prayers and action. So many of you have offered yourselves, your time and your talents to help us get through this challenging time. We thank you all from the bottom of our hearts.

We will give regular updates on this blog. We considered creating a separate "cancer blog" but thought that would be far too depressing. Besides, we are looking at this as one part of our lives, not the sole focus of our lives. Sadie is still learning and growing everyday and we want to continue to document the highlights of her development and any other news related to any of our family members.

Again, we thank you all for your love and support.

Pee Pee?

Yesterday afternoon, Sadie was playing with Nathan and me in our bedroom. Out of the blue, she pointed to our bathroom and said, "pee pee?" I have never tried to potty train this child. She's 16 months old and I'm just not that worried about potty training in general. So I was completely taken by surprise by this. I told Nathan to run and get the training potty that Aunt Adrianna bought her.

I took off her diaper, she sat down on the potty for a few seconds, stood up, looked back but the potty was empty. She sat down again, waited for a few seconds, stood up, look back but the potty was empty. This pattern repeated a few times and then she was over it.

Clearly, she's not potty trained yet but this was a big day.

Blogging...Blah Blah Blah

So apparently I suck at blogging. It's been 5 months since my last post and that was in draft form until 5 seconds ago. I mean really...it's not that hard but I have to create some sort of schedule or something to remind myself to do it.

Also, I have to give up on the idea that I ought to be pithy or witty or ironic or anything else that would warrant having other people read it. It's a blog...not a homework assignment. Most people won't read it. There's enough to read and I am not about to compete with these people who make it a second job.

So here's the latest...I won't try to catch up on the last 5 months but I will do this week. Sadie's sleep is going down the tubes again because I have no patience anymore. At 2 am if she's crying and doesn't "cry it out" in 5 minutes she's in our bed because she will be quiet and sleep until almost 8. I mean really folks who wouldn't choose that over an hour of "crying it out". So when she's 18 and afraid to go to college because she doesn't sleep alone you can all say I told you so. Funny though because I don't think that ever happens.

She is an eating machine. In fact, whereas she usually goes down between 7-8 pm for the night, the other evening she wore Nathan down with her pleas for more food. She had already consumed a full dinner and tons of food during the day but she wanted "more please" - insert the sign language for those two words and a pitiful look and that's how she won and ate goldfish, cheerios and mums until 9:30 at night.

Oh..and for the last few weeks it's "mine, mine, mine". Yes, we've hit the "mine" stage. And the full out temper tantrum in a nanosecond if I don't get my way stage.

One area where we've seem to have made progress is the weaning. We are finally off the boobs. Since Nathan and I went down to D.C. for the night for the opening of his show at the Target Gallery on January 13th I have not nursed her once. She asks every day a few times a day but is easily distracted by an offer of juice or the response "all done". Ah to have my breasts back. Now I just have to try and get them their old job back. I hear they can be pretty persuading. I'll have to set up a meeting with their former boss.

Viva la France!

Ton Ton Joel, Tati Anne and cousin Dorian landed back in the U.S. last Saturday night and have been spending the week with us. We've had a great time with them except that little Miss Sadie had her first stomach bug. Her illness paired with lousy weather have put a bit of a damper on NYC summer fun activities but everyone has been a good sport about it, especially Dorian, who at only 4 years old, never complains about being bored.

Sunday, Lara and Lorin hosted a little barbecue and Dorian was able to meet his choice of future brides, Francesca and Fiona. Either one will work as long as we can get him to marry a Tomei he is not related to by blood. Terra, Seth and Jackson were there as well so it was kids galore.

Sadie took her first set of real steps that night. Ton Ton Joel counted as many as seven in a row!

On Monday, anticipating a rainy day, we decided to head to the Museum of Natural History so Dorian could see some dinosaurs. I should have known something was amiss when Sadie took an hour and 45 minute nap before we left. If I have not already noted in this blog her sleeping habits, it's because she has none. I am over the moon when this kid sleeps an hour straight.

So we piled into the car and I mean that literally. Nathan driving, Joel in the front passenger seat, both car seats in the back with Anne squished between them and I in the trunk. Luckily, my stature allowed for full leg extension but oddly I had to hunch because the head clearance was a little low.

As we began our journey up the West Side Highway, only a few blocks south of Chambers, Sadie began to fuss and then "blagggghhhhh"! Puke everywhere. Nathan veered off to a side as Anne tried to contain the mess. We pulled her from the car seat and stripped her down. I am pretty fanatical about having a change of clothes in the diaper bag but alas there was none. I thought we could still go because we had a clean hoodie for her to wear but everyone advised against it. I just felt horrible that Dorian would miss out on seeing the dinosaurs. We headed back to Brooklyn and when we were only blocks away from the house she blew again. They were right to make us head home.

Unfortunately, Sadie was sick with that stomach bug for the rest of their visit so much of it was spent close to home. We were so happy to have the other set of Bonds with us even if for a short visit. We know it will be awhile before they can come up again but we hope to make a trip down to Savannah for cousin Dorian's 5th Birthday.

Until then Viva La France!

Two Steppin' Sadie!

Sadie just took her first two steps! Her motivation? The giant photograph Betsy took of her. I guess we don't have to worry about her self-esteem. I'm betting on a weekend filled with walking practice up at Bubba (Ed) and Tudie's (Susie's) house this weekend. I'll charge the video camera and see if we can get some film of it.

Nine Month Stats & Some Recent Milestones

Sadie had her 9 month check up 3 weeks ago. Here were her stats:
Height: 31 inches - 130th percentile - this officially makes her half my height. YES...half my height!!!
Weight: 22 pounds 3 ounces - 95th percentile

Anecdotally, she has 4 top teeth and 2 bottom ones. She calls Griffin "woof woof". She is standing on her own for 10-15 seconds at a time before realizing she is standing on her own and then reaches out for something. Sadie and Griffin have become best friends because he has realized that if he stands under her high chair she will drop food for him. Of course, sometimes this means that Griffin walks around with crumbs on his back.

Sadie seems to be insatiable and now expresses her hunger by smacking her lips. She loves music. Nathan discovered her favorite song is Empire State of Mind by Jay-Z and Alicia Keys. She bounces up and down and flaps both hands in time to the beat. If she's fussy, singing to her will calm her immediately. And she is already a muse. I made up a song for her right before Christmas and now 'Uelita has made up another one.

Sadie's strength and reach are startling. She seems to be able to lift, push and pull almost anything in her path. She was holding on to the back of her high chair which is cantilevered to the dining room table when Nathan tried to pick her up. She wouldn't let go of the high chair and pulled the entire dining room table with her as he tried to pry her away.

June 12th was our 5 year wedding anniversary and we were lucky enough to have the night to ourselves thanks to cousin Ris and the use of her love nest. This meant that Sadie spent her first night without Mommy and Daddy. According to Auntie Chelle who slept over, she was an angel and slept through the night without a peep. We are still waiting for a repeat of that full night of sleep but we're not holding our breath!