one day down, twenty-seven to go

Chemo and radiation are underway and I'm looking forward to having the first day treatment in my  rearview mirror.   I am thankful the anticipation ended up being worse than the morning itself (isn't this so often the case?).  I now have the fanny pack in action at my side, which periodically makes a funny little noise that sounds vaguely like a frog ribbit when pumping the 5FU into my body via the port.  If you didn't know I had a chemo pump in my fanny pack, you might wonder if I had a frog in my pocket (which is in fact something Flo had a tendency to do each spring until recently).

We started the morning in the Radiation Oncology office.  The radiation takes place in a large, clean, bright room with lighted panels of leaves and clouds on the ceiling and an immense white, space-age looking machine in the middle all focused around a grey circle on the floor.  There are green beams of light flashing from various sides of the room, all meeting in the middle and forming an eery, glowing asterisk.  Once I lie down on my belly on a tray of sorts with a not-so-soft, blue foam cradle for my head, the techs in the next room steer me by remote control into the treatment field. The glowing green asterisk falls perfectly in the center of a (very tiny) tattoo on my lower back/upper butt.  My radiation oncologist made sure to let us know that although the tattoo appears black it is in fact just a very dark shade of blue India ink.

When I went in last week for my radiation simulation session this tattoo was needled into my skin along with twin tattoos on my hips that will allow the radiation techs to line me up in precisely the same way for each of these 28 radiation sessions.  During the planning session they used CT scans to outline and determine the exact field of treatment which is important so that they can maximize the crippling effects of the radiation on the tumor cells while minimizing its effect on surrounding healthy cells.  I am well aware that the 28 days of radiation will come with side effects, most of which will develop gradually and cumulatively and some of which can last for a long time.  However, today the friendly nurses and my experience in the clean white room bordered on pleasant.  If my morning of treatment had ended there I would have no complaints.  

In our chemo class last week Robbie and I listened to our nurse Sam review a long and harrowing list of the potential side effects of chemo and what to do if any of them should present themselves and what to do and not to do in hopes of keeping them at bay.   Hearing this list laid out in detail over the course of an hour, followed by a tour of the infusion room was a low point of the week, but today I tried to focus on the animal crackers I was eating while they accessed my port and got the chemo going.  

Before they started the chemo infusion, we met with an oncology PA to review questions, of which I had many, as usual, about managing side effects, probiotics, vitamins and medical marijuana among others. The "hook-up" itself was not too bad.  I had been given a numbing cream to rub on the skin at my port site and I can't say I felt the needle go into the port.  So far I can see on the digital pump screen that 8 of the 96 ml of 5FU has been pumped into me.   I haven't noticed any side effects yet other than being very sleepy.  I hope this will continue though I know the effects will likely be cumulative over the next six weeks.  For the rest of the week I go in just for radiation which takes about 5 minutes each time and then on Friday morning I get disconnected from the chemo pump for a weekend off.

getting ready for chemo

Hi!  This is Juliana's little sister Miriam, also sometimes confused for her twin, and although you can't tell (damn retinol!) I am in fact younger.  I got the chance to visit my sis, Robbie and my favorite nieces this past weekend, and we had a great time.  Yes, there was a port insertion surgery involved, but also hipster coffee, hair salon, spaghetti dinner at Bea's school and giant trampolines.

(powerpoint rendering of our extreme trampolining) 

When I arrived I found my bed covered with sparkly hearts and a pink and purple squishy (if you don't know what that is, you should google it and then get yourself one).  I had made the long trip up from NYC on valentines day and of course Flo and Bea made sure I felt so much love when I arrived.

Early the next morning Juliana and I headed to the hospital for the port insertion.  Luckily the doctor kept us waiting for long enough to catch up on our recent skin care routines, my latest dates, new favorite books and podcasts.  Soon enough Juliana was groggy and seemingly feeling pretty good with the pre-surgery cocktail.  After my rubbery eggs and rock hard sausage in the cafeteria (no shame Concord Hospital, I know you're doing your best), she was back, awake and ready to go, only slurring her words a little bit 😏 between sips of ginger ale.  Although I know it wasn't the most fun morning for her, I loved having the time alone to catch up with my sis and to finally get the chance to take care of her like she has always done for me.

The next day, armed with a few ice packs, we headed to the most hipster coffee spot in Concord to meet a friend and so that I might feel a little bit at home (I am from Brooklyn), and then on to the hair salon.

Finally, and perhaps most importantly, we learned that fanny packs are back in style: http://www.instyle.com/celebrity/celebrities-wearing-fanny-packs
(2017 counts as back in, right? or are they already out again?).  This is important because the chemo Juliana will get (aka 5FU) comes in a fanny pack, and Juliana's top priority, as I am sure you all know, is always being the most fashion forward in Hopkinton, NH so we are in luck.  Good news is that although the cancer fighting cocktail and it's pump come in a proprietary black, nylon fanny pack, we have confirmed that it can in fact be placed in ANY fanny pack.  Suggestions welcome!

Before I left, my nieces took me to a giant gym full of giant trampolines, which caused me to question why I still live in a city without such a thing.  We jumped our hearts out and then it was time for me to go 😔. 

I was so touched to see all of the cards, flowers, gifts, meals, and care packages that had arrived and continued to arrive, and the long meal train that was already all booked.  I left knowing that my sis was in the best hands with Robbie, Flo, Bea and her wonderful community and support network, but sad that I can't be there to chat more about facial serums and tinder dates to distract her from harsh drugs and fatigue.  I will be back soon to the land of #livefreeordie, and in the meantime my big sis is going to kill it with her new fanny pack swagger.  Pictures to come..

(sunset from their living room)

genetics

Over the past couple of weeks, a new cancer diagnosis has distracted me from paying much attention to the weather among other things, so it was a lovely surprise to wake up this morning to a sparkling blanket of new snow.  

snowy February morning

Since I've gotten many questions about this, I want to address the subject of the BRCA2 gene, aka the breast cancer gene.  As some of you know, I am a carrier of the BRCA2 gene mutation which I have known about for 15 years now.  I learned this as a result of genetic testing I had done in 2003 as part of a study at Georgetown's Lombardi Cancer Center which I was invited to join because of a significant history of breast and ovarian cancer on my father's side of the family.  As a BRCA2 carrier, my lifetime risk of developing both breast and ovarian cancer is quite a bit higher than that of the general population.  

I lost my paternal grandmother to ovarian cancer and my oldest cousin to melanoma resulting from BRCA2-related metastatic cancer at age 38.  With this all in mind, shortly after I was done nursing our second daughter Beatrice, with virtually no hesitation, I decided to have a prophylactic (preventative) bilateral mastectomy as a way to significantly reduce my risk of developing breast cancer.  I had this surgery in 2011 and to be honest I feel just as grateful now as I did then that I was able to take this step proactively.  This said, it was an unpleasant surprise to then learn that cancer had nefariously found its way into a completely different part of my body.  But there it was, here it is and on we go.

While having the BRCA2 gene mutation does increase my risk of certain cancers beyond breast and ovarian cancer, interestingly enough colon cancer is not one of them (although current research is under way that may prove otherwise).  Since colon cancer is rare in people under the age of 50, I will be meeting with a genetic counselor at Dana Farber in May to review further genetic testing options with regard to my particular type of cancer.  My family has no known history of colon cancer, however, the main reason I had a colonoscopy is that my younger sister Miriam had one last year and because pre-cancerous polyps were found in her colon, her doctor advised her to make sure her siblings also had colonoscopies as soon as possible, even though my brother and I are both under the age of 50 which is when people in this country typically get their first colonoscopy. 

As for the coming week, on Tuesday Robbie and I will meet with a radiation oncologist at NH Oncology & Hematology to review the course of my radiation treatment.  After this we attend a class called "chemo teach" that presumably does exactly this.  I am hoping after this appointment that I will be ready to start the chemo and radiation on Monday Feb. 26th (for some reason, apparently treatment always starts on a Monday?).  I am having a bit of trouble being patient as I wait to start but I'll just assume it's all part of the plan and at some point I will see why and how all the pieces fell into place as they did. For now I'll just sit tight and snuggle up in bed with Flo and Bea to read a bedtime story.  

port surgery today

"Quick and easy," is how Juliana describes the surgery to install her port today at Concord Hospital.  Juliana's sister Miriam came into town for a visit last night.  She brought Juliana to the hospital this morning and they were home for lunch and naps.

We all love having Miriam visit, especially the girls, who took her to the elementary school's spaghetti dinner and read bedtime stories to her.  The rainbow bagels she brought from NYC were also exciting.

It reminds me of when I crashed my bicycle, injuring my face and knocking out three teeth.  My mother came up to help out for a few days, and after she left, Juliana was talking to Flo about clouds and silver linings. Juliana said, "it is too bad that dad crashed and I wish he hadn't, but it's nice that we got to spend time with Grammie." Flo, who was three at the time, thought about it and said "yeah. I think it was worth it."

We are touched by the cards, care packages, special deliveries and meal sign ups.   Thank you.

second opinions and one sweet guinea pig

People have told me that the stage I am in now-being newly diagnosed with cancer and not yet knowing what comes next, can be the hardest time.  I am beginning to see the truth to this as with each new piece of information we gather about what lies ahead, we feel a bit more assurance that everything will be OK.  It will.

I was fortunate to be able to get an appointment today at Dana Farber with an oncologist and radiation oncologist both of whom specialize in GI cancer.  We met with them at the same time which made everything much easier.  The oncologist began by detailing the stage of my cancer as IIIB because I have one (just one!) lymph node at the site of the tumor that is likely “involved,” meaning it is about 2mm bigger than they might expect it to be.  However, the “involvement” of this little node cannot technically be determined without a biopsy which will not happen until the time of surgery.  The hope is that by the time the lymph node is removed, the chemo and radiation treatment will have eradicated any cancer cells from this questionable lymph node. 

The treatment course the oncologist and radiation oncologist outlined both for before and after surgery was practically identical to what we learned from my surgeon as well as the oncologist we met with in Concord last week.  One of the main reasons for our visit to Dana Farber was to determine whether getting treatment there would make a difference in terms of the likely outcome and thus whether it would be worth living temporarily and/or commuting daily to Boston.  It was reassuring to hear these incredibly talented, wise and kind specialists agree that the chemo and radiation I will receive in Concord, NH--close to home, will be nearly identical to the treatment I would receive under their care at Dana Farber.   

 

In other news, our beloved guinea pig, Moe, 

died quite suddenly and unexpectedly last 

night.  He was a sweet little guy who was 

adored by Flo and Bea and perhaps a few 

others.  Flo and Bea seem to be handling 

his death better than I would have 

expected.  They asked if they could have 

a “sleepover” together in Flo’s bed and 

when Robbie went in to kiss them 

goodnight they were under the covers 

laughing and telling stories about Moe.  

Happy Valentine's Day!

oncologists at Dana-Farber

Tomorrow we will meet with a medical oncologist (Dr. Matt Yurgelun) and a radiation oncologist (Dr. Harvey Mamon) at Dana-Farber in Boston. We are curious whether they will suggest a similar treatment plan to that which has been described by the surgeon and the oncologist we met with last week in Concord, Dr. Divenuti.

This is complicated stuff and just because another doctor might recommend that we consider a different type of treatment doesn't mean that the first doctor was wrong. There is always so much happening with cancer research, and if there is some variation that might be just as effective without hurting Juliana as much, or might make it less likely that the cancer could come back, we would like to know about it. Our surgeon said that genetic factors might inform a slightly different approach to treatment after surgery, but that the surgery and the chemo/radiation leading up to it was pretty much the same. We will see if we hear the same thing tomorrow.

diagnosis

Here's a letter my husband Robbie sent out to some family and friends after my first doctors' appointments: 

I'm writing to provide an update on Juliana's diagnosis and treatment for cancer. 

We learned last Tuesday that Juliana had a cancerous tumor in her colon. Colon cancer is easier to say but technically speaking it is colorectal cancer.

She had a CT scan last Friday which gave us the good news that it had not spread to other organs. The rates of recovery and cure are very high for this type of cancer. 

On Tuesday we met with Dr. Ron Bleday a colorectal surgeon at Brigham & Women's Hospital in Boston. He ordered an MRI to determine what stage it was.  Juliana had an MRI done today which showed that the tumor has grown through the muscle wall. The MRI was "equivocal" with respect to whether or not the lymph nodes are "involved" which will make the difference in whether it is considered stage 2 or 3. Another radiologist is going to read it tomorrow and weigh in on this though it seems that this doesn't make much of a difference in terms of what the treatment will be. We also met with an oncologist yesterday, Dr. Gina Divenuti, who gave us the rundown on the likely treatment protocol which is roughly:

-install a "port" under her skin for IV chemo on 2/15

-start 6 weeks of chemotherapy via continuous infusion (she will carry around a fanny pack with a vcr-tape sized infusion pump 24 hours/day, Monday through Friday). The chemo drug they will give her is called 5FU.

-6 weeks of radiation concurrent with the chemo, which consists of a short daily visit to the clinic to have the local area radiated in a machine.

-Following the 6 weeks of this chemo/radiation treatment, there will be 8 weeks during which the effects of the therapy continue to treat the tumor, causing it to shrink, making the eventual surgery easier.

-Approx. 8 weeks after the chemo/radiation ends, she will have surgery to remove the tumor. She will go to Brigham & Women's in Boston for the surgery, which will likely be early June.

-After 3-4 weeks of recovery post-surgery she will resume chemo (but no radiation) to make sure it doesn't come back. This "adjuvant" chemo is likely to last 4 1/2 months. The chemo they will probably use then is called FOLFOX.  This treatment regime has been very successful in lots of cases with this type of cancer so it will be a long road but we have reason to be optimistic.

Juliana is doing well under the circumstances and is mostly just tired from trying to process all of the information that has been coming at us. Your good wishes, love, and prayers are always welcome and appreciated, please don't be offended if you don't hear back from her.

Juliana has no desire to keep this secret, so please feel free to share this information with anyone else who might be interested. 

This email is terribly clinical and I'm sorry for that. For us, as we have learned more about exactly what it is and how it will work, it has become less terrifying and incomprehensible. I hope that all this jargon has the same effect on you. 

Rob