juliana's home

Juliana had a good day today and was cleared to come home this afternoon. She is home now resting up with lots of hugs from Flo and Beatrice and some applesauce and ginger ale.

back at the brigham

We live in a small town, so if you live in that same small town it's possible that you've heard that Juliana experienced some complications on Monday night and Tuesday that landed her in the Concord hospital ER. She was transported by ambulance back down here to Brigham & Women's yesterday (Tuesday) evening. She is doing much better, and we're not sure when she will get to go home, but she is up and moving around and taking in clear fluids now so no one needs to worry.

For the medical people: the complication was related to a blockage because of swelling in her ileum.

back home

Juliana came back home this evening (Sunday). Four days post-surgery is basically what we were expecting. It looked for a little while like she would be able to come home on Saturday, but it didn't happen. Four days in the hospital certainly gives you some perspective, in that you see some people in really difficult circumstances: people with no family, language barriers, etc. The hospital is ironically and unfortunately a bad place to recuperate with its incessant activity and beeping machines, so we are very happy to have Juliana home again.

When she got up to walk around, the girls got to fight over the bed controls.

good news

Juliana's surgery was today and it was successfully completed just now. The tumor was not invading her uterus so they left that in. There seemed to be some cancer remaining, but they took it out, along with her ovaries, fallopian tubes, and a bunch of lymph nodes.

Thank you for all of your kind messages! We are looking forward to Juliana's recovery and we expect that she will come home this weekend.

back in the thick of it

written by Juliana's husband, Rob

Happy Mother's Day!

It's been a little over a month since the end of round one of chemo and radiation. Overall, it's been a good month. Aside from a tough week dealing with radiation burn after treatment ended, Juliana has been feeling really good. At the end of April we had a wonderful week on Sanibel Island, while Juliana's sister Miriam along with her brother and sister-in-law gave us the incredible gift of peace and quiet by taking the girls to California. A break from the long, cold winter, complicated daily logistics of life with jobs and kids was wonderful.

We spent nearly all of our time outside, in the sun, on bikes, in a kayak or on the beach. Juliana decided that fate hadn't introduced enough uncertainty into her life and decided to tiptoe right up to an alligator that was crossing the path in front of us as we were biking through the Bailey Tract in Ding Darling National Wildlife Refuge. So thanks to her recklessness, you get a nice picture of ally.

Soon after our big trips, we had a family weekend away in Stowe, in part to celebrate Bea's 9th birthday and in part because we always love a weekend in Vermont.

The occasion for this getaway was the Weekend of Hope in Stowe, Vermont. The Weekend of Hope is an annual event where cancer patients and survivors are housed, fed, and treated to a program that includes informational talks about cancer research, sessions to meet others who have or had the same type of cancer, and even a colorectal cancer survivor/comedian hosting a "Sh** Show,"  cracking jokes about fanny packs and colostomy bags. Who knew?

Things had begun to feel so normal over the past month that it was hard to believe that this cancer thing was real. Although we've known all along that Juliana would have surgery followed by post-operative ("adjuvant") chemotherapy involving some heavier medicine, it started to feel like we were out of the woods.

We learned that in 10-15% of cases, tumors can disappear after one round of chemo and radiation ("complete clinical response" or CCR).  Juliana was feeling better than before her diagnosis, and a local friend who had survived this type of cancer last year had experienced a CCR. So it was easy for us to convince ourselves that was what was going on with Juliana. Her cancer was treated, it was just a matter of Dr. Bleday cutting her open to look around and a few months of preventive chemo and this would all be behind us.

That delusional self story came crashing down around us this past Thursday, when Juliana and I spent a very long day in Boston at Dana-Farber and Brigham & Women's for pre-operative appointments. The highlights of what happened:

• we rushed from one appointment to another, through tunnels and across catwalks, always late for one thing or waiting for someone who was running late, from 8:30am to 5pm
• Juliana didn't eat anything from 7pm the night before until 5pm 
• A CT scan showed that the tumor had shrunk but was still visible and that it is possibly touching the uterus, which apparently had been the case before, but somehow we didn't learn of this until Thursday. Until Dr. Bleday is inside of Juliana's body during surgery we can only guess what this means.
• We met with a "stoma nurse" named Emily who guided Juliana through the ins and outs of life with an ileostomy bag, which we expect she will have for about 6 months after surgery. This was similar to the experience of meeting with the nurse prior to chemotherapy. In both cases, wonderful women giving good guidance in a compassionate manner about something we wished we never had to learn.
• Because two different surgeons will be involved in Juliana's surgery, Dr. Muto from Dana-Farber and Dr. Bleday from Brigham & Women's, we met with two different medical teams and their PAs, NPs and MDs. All were excellent, but it was a lot of information. We were given two different schedules of what Juliana needs to do the week before, the day before and in the hours leading up to her surgery and it is up to us to figure out how to combine these two regimens.

Surgery is scheduled for the afternoon of May 23rd.  Juliana will likely be in the hospital for 3-4 days. As for after surgery, the plan is unchanged. Juliana will have about a month to recover and then about 4 months on a chemo regimen known as FOLFOX.  Folfox includes the 5FU she was on before (of fanny-pack fame) with the addition of leucovorin and a nasty drug called oxaliplatin.

Your thoughts, positive energy, prayers and good wishes are always welcome. We have received lots of messages from people who have burdens of their own to carry. We appreciate them all. Juliana would like to write back to everyone. Please know that she appreciates your checking in and sending love, even if she does not write back, because she doesn't always have the energy to let each one of you know how much she appreciates your kindness. We have added some additional dates to the  meal train for anyone who is inclined.