the gift of a box of darkness

artwork by Kari Moden

It was a snowy and cold but glorious afternoon in Boston in February when I woke up from my colonoscopy and heard my surgeon's voice through a partially sedated fog. No signs of cancer. The CT scan I had a few days earlier at Brigham & Women's showed the same clean and healthy colon that Dr. Bleday saw during the colonoscopy. Robbie heroically drove me to and from Boston in the thick of a snow storm and between the lasting effects of the sedation and the relief of good news, I slept better than I had in a very long time.

Though I didn't fully realize it at the time, looking back now I see how anxious I was in the weeks leading up to the colonoscopy. At the time, I was slowly but surely regaining my energy but holding off on making plans for much of anything. I had a distinct memory of hearing the words, "we found cancer" upon waking up from my last colonoscopy almost exactly one year ago. Even though this colonoscopy was not likely to end in the same way, the memory was loud and strong. But now that it is behind me and I will (try to) relax for a few months until it's time for my next scan this summer. From here on out for the next two years, I will continue to be screened with blood tests and a physical exam every 3 months, and a CT scan and sigmoidoscopy every 6 months. I am committed to working on managing my fear of recurrence and scanxiety, as we survivors call it, but I also recognize this will now be a part of my life that I will need to make a space for and preferably a comfortable one, so I can move forward keeping cancer in the 
rear-view.

I am always happy to hear from friends and family that they have scheduled or gone in for a colonoscopy. In fact, my father-in-law decided that was the best way he could celebrate his birthday this year! He too woke up from his procedure to good news and then went off to celebrate. As you likely know or have heard the colonoscopy itself is relatively quick and painless-it is the preparation leading up to it that can be unpleasant at best. But for anyone reading this has been putting one off, I would like to add that the infamous preparation is not nearly as bad as it used to be nor anywhere near as bad as waking up to the words I heard the first time. 

https://health.clevelandclinic.org/fretting-about-your-colonoscopy-new-prep-routine-is-easier-to-swallow/

I do still have my port installed on my upper left chest. After the colonoscopy my surgeon said I should go ahead and have it removed, but at this point I feel some superstition about having it removed, like I might be tempting fate. So I'll leave it in place for a while longer until the time feels right to call and schedule an appointment to have it removed. In this same vein, but not the same physical vein as my port, I am reluctant to declare an end to my cancer journey. Though coming through these recent tests with a clean bill of health one year from my diagnosis does feel like an appropriate time to to dwell on my appreciation for the good fortune I have had over this past year to be surrounded by and cared for by so many friends and family who have generously shared their love and support with me and our family. Thank you! 

I was sad to hear in January that one of my favorite poets, Mary Oliver had passed away, of cancer no less. Yet, I was reminded of how comforting her words have been to me at various times, and especially this... now... 

It feels pretty good to be firmly planted in 2019 with the year of cancer and treatment behind me. I finished my chemo pills as scheduled on Dec. 4th, the last day of my trip to DC. For so many reasons I was delighted to stop popping those Xeloda pills morning and night. The gastrointestinal side effects over the last couple of weeks in November were especially rough, not to mention the peeling of skin on the tips of my finger and soles of my feet (copious amounts of bag balm helped to some degree, though it was a struggle to keep the cracks from bleeding). But I also I felt a bit like I had come to top of the mountain, a steep mountain I had not planned to climb. It had been a pretty tough climb and here I was at the top and now....

Well, now what? 

Though weary, I was aware of some new muscles and perspective I'd been fortunate to acquire along the way and honestly these two things alone made the climb worthwhile. 

Getting through my treatments, through chemo and radiation, frequent trips to and from Boston, through one surgery and then another followed by four more months of chemo, required me to focus my attention and maintain momentum to stay on course. I had a goal and I had reached it! Friends and family congratulated me, of course all with the kindest of intentions. But, instead of feeling the exclamation point I felt more of a question mark. I assume the cancer has been left behind on the mountain, but truthfully I can't be certain of this. I can see too now that I found some comfort in being in treatment; knowing I was doing everything I could to rid my body of every last cancer cell. But it's all in my rearview mirror getting a little bit smaller every day as I move forward. I know I will continue to glance back and I'm pretty sure I will do so more often than I want to. I am already anticipating, with some anxiety my first post-treatment scans that are scheduled for mid-February. 

Physically I am continuing to feel better every day and I have never been more appreciative of waking up and feeling good. The experience along with its accompanying stream of love and support I was so lucky to receive at every single step of the way has given me the determination I need to look forward with strength, hope, curiosity and excitement. Thank you for this! 

I learned a lot about myself, my body (my digestive system--more than I ever wanted to know about my digestive system!) but more importantly about what a loving family and group of friends and community I am a part of and look forward to being a part of for so many years to come. 

Life is hard. Life is beautiful.

Sunset on December 2nd, as thousands of people were lining up outside
of the Capital to pay their final respects to George HW Bush.

My trip to DC was a fitting end to the year. I flew into DC on Dec. 2nd, the same day that the late George HW Bush arrived to lie in state at the Capitol rotunda. I stayed at a hotel that was just a couple blocks from the Capital. There were police and military on every corner, flashing lights and motorcades coming by even more than usual. The solemnity of the day was palpable in the air. 

I was with 9 other colon cancer survivors from all across the US. After spending a little time getting to know each other, we worked on how best to "tell our stories" to our representatives when we met with them the following day. We focused on explaining how and why the repeal of the Medical Device Tax would allow for increased availability of potentially life-saving scans for other Americans in situations similar to ours. Many of the members of our group and even more fellow survivors live from one scan to the next, and their lives depend quite literally on technological advancements that are currently on hold because the device tax means that these companies are diverting money from research and development.  

On our way to meet with our representatives.  (I am the third one in from the left.)

As it turned out, the government was closed for a day of mourning on Wednesday, the day we were scheduled to meet with our representatives. On that chilly, grey day the streets we walked along were filling with people gathering to watch the motorcade go by. Most of us, myself included were still able to meet with our designated representatives and staffers. While I was waiting to meet with Senator Maggie Hassan's staffer we watched on TV the scene that was taking place just a block away as Bush's coffin was carried down the steps of the Capitol building to the van that carried his body to the National Cathedral for his funeral service. 

It felt good about being able to tell my story and use my experience to encourage Senator Hassan to push harder to make the repeal of the tax happen as soon as possible. 

homestretch

Gratitude feels easy to come by this year.  

It's been nearly 10 months since the day I woke up from a my colonoscopy to hear, 

"you have cancer." 

Today, I have 10 days left of chemo pills.  

Homestretch.  

Gratitude.

Last week I made another trip down to Dana Farber, to meet with my beloved surgeon for a check-in. I am always happy to see him. After chatting for a bit and then doing an exam and he said everything looked great. The appointments I have in Boston are in addition to my regular appointments and labs with my local oncologist in Concord at Payson Center. Once I have completed chemo, I will continue seeing my local oncologist for the next month or so and then in February I will go back to Dana Farber for a set of scans and a colonoscopy to make sure that everything is copacetic. 

The early season snow has been a treat in NH.  The four of us got out for some great cross country skiing the day before Thanksgiving. Robbie and I have been gearing up to coach our local Bill Koch nordic ski league in our town again this year. It's fun to think about being out in the snow with all the kids again soon.

We headed up north to Maine for Thanksgiving with Robbie's family. Unfortunately because of my compromised immune system, I decided I would not spend Thanksgiving with everyone, since it takes place in an enclosed space with lots of, albeit beloved, people. This is my m.o. these days. When I can't avoid being around people (like last week when I got to see Flo in her school play of Rikki Tikki Tavi) I wear a mask, but I wasn't sure how to pull off wearing a mask for Thanksgiving dinner. So, Robbie's parents kindly took the girls up to Damariscotta, Maine to be with everyone for Thanksgiving and Robbie and I spent a little time on our own together in Portland, which was a gift for which I am also thankful. Flo and Bea were treated to an equally excellent time with their cousins, sledding on the hill from Aunt Sarah's house down to the nearly frozen lake and then piling into sleeping bags for one big cousin sleepover.

Next week I will put my mask on again to get on the plane to DC where I will be for a few days to do some advocacy work in the interest of encouraging my NH representatives to vote in support of the repeal of the medical device tax. I am looking forward to what I will learn from this experience. If you would like to read more about it you can information at: 

https://www.rightscanrighttime.org/blog

and
https://www.brookings.edu/opinions/5-questions-about-the-medical-device-tax-and-its-potential-for-repeal/

I think I can

It was fun to get out a few weeks ago for the Get Your Rear in Gear Run. Thank you so much for your generous donations, support and especially to all of our good friends in Hopkinton who came out on a sunny Saturday morning to join us. It was a perfect day to walk through the apple trees at Gould Hill Orchard, admire the view (I think we saw Mount Washington-peeking through the morning fog) not to mention an ideal excuse to pick some apples and eat a cider donut. Thank you!

I am now nine weeks into and half-way through my regime of clean-up chemo, which consists of a hefty daily dose of extremely toxic-smelling pills. If all goes as planned this will be the last part of my cancer journey that started nine months ago.  I think I can!

I am continuing to take four Xeloda pills twice a day for two weeks followed by one week "off" to give my body a chance to recover before the next assault. I meet with my local oncologist on my off weeks to check in and have blood drawn to confirm I am healthy enough to continue with the next round. Thankfully my labs have all looked good so far. 

As far as side effects, fortunately the chemo I am on doesn't usually cause all of the dreadful side effects typically associated with chemo, or at least not to the same extent as some chemo drugs. I have not lost my hair, though it has thinned. Any tips on regrowing hair would be appreciated! Another side effect is very dry skin and in particular peeling finger tips. Each night I slather my hands with Bag Balm and wear thin cotton gloves to sleep to protect the skin on my hands. The skin has peeled enough that my iPhone no longer recognizes my finger print. I am also suffering from "chemo brain", which is essentially mild cognitive impairment and feeling like I am in a bit of a brain fog most of the time--to the point of entertainment for Flo and Bea when I ask them to remind me of someone's name or complicated words like rock:) And I drive Flo and Bea crazy with my repeated requests for them to wash their hands and do everything else I can to keep myself healthy in spite of a compromised immune system. I am hopeful that I can remain healthy enough to finish these last 9 weeks of chemo, meaning I would be done with this whole charade by mid-December. 

gratuitous picture of the happy apples (full of antioxidants)
and little oranges (lots of phytonutrients) that was always
 my favorite page in the book.

It seems that in addition to continuing to recover from surgeries, my body is perhaps adjusting to the chemo and I am feeling better more days now than not.  This is such a relief!  I have found that exercising daily as much as I am able is what helps me best tolerate the chemo. I make this my priority most days and it has been great to start riding my bike again, which I really missed doing over the past few months. I won't lie-I still have rough days, nights and moments but they are fewer and farther between and it seems like I am now moving out of crisis mode and beginning to think about what comes next. 

But for now, we are all so happy to have my brother and his son visiting from California.  Flo and Bea never ever tire of playing, being silly, snuggling and making up games with their cousin Augie. Having him here for 5 days has been such a treat for them-and equally a treat for me to have time with my brother who has also been a most helpful visitor in every way. We will be sad to say goodbye to them.

summer's end and "Get Your Rear in Gear"

Cancer aside, it's been a pretty good summer.  I'm about a month out from my reversal surgery now and healthy enough to be eating salad and blueberries again along with all the other foods I was missing. I am also healthy enough to have started my next round of chemo. This current and hopefully last round of "clean-up" chemo consists of chemo pills (brand name :Xeloda), four in the morning and four in the evening. Because the pills are so toxic I can't touch them with my bare hands, but yes, I do then swallow them. I will take these pills for six "rounds," each round consisting of two weeks of taking the pills followed by one week off. If all goes smoothly I will be done with this last part of my treatment by mid-December. For the first week or so of taking the pills, I felt pretty crummy, but I have had progressively more better days and I hope this will continue.

All things considered recovery had gone pretty well. That is not to say there haven’t been some lows, some painful patches and tearful moments (or hours) as well, but there have been an unexpected number of bright spots along the way too. In fact I suppose those two sentences are a somewhat accurate account of the past 6 months overall. At my follow-up appointment last week with my surgeon at Dana Farber, he was pleased with my recovery and even said that my incisions looked beautiful, which I found amusing given how they look to me and compared to how my stomach used to look, but gracefully I accepted the compliment just the same.

Flo and Bea have gotten to do some pretty neat things this summer including spending a week in Santa Fe with my extended family for my aunt's wedding in early August. Per their reports, after the wedding which was at the Museum of International Folk Art, some highlights of the week were building forts with their cousins and eating countless Jelly Belly's (diverted from the wedding favor baskets they were tasked to help fill). I was sad not to be there with them and the rest of my family, but also thankful for a quiet week at home. I had time to nap, and walk, which I have been doing a lot of these days, go to appointments and make more appointments. Robbie and I barely knew what to make of the lovely uninterrupted dinners and conversations on the porch in the evenings. We were also able to spend a weekend in Burlington, VT with cousins and a day in Boston to see Book of Mormon.

happy campers on messy games day at Camp Kesem

Before the girls had a chance to unpack their bags from Santa Fe, they were packing back up for a week at Camp Kesem. If you are not familiar with Kesem, it is a nationwide organization for children whose parents have or had cancer. The Camp Kesem location Flo and Bea attended was in New Hampshire's lake's region about an hour north of us. Kesem focuses on giving campers a week of being a kid and having fun all with other kids and counselors who "get it"-a week that is free of worries that may have become a part of life at home. 

The first counselor I met when we arrived had on a t-shirt that read, "Until there's a cure, there's a camp."  Everything about the place felt welcoming and inclusive and thanks to thousands of volunteers and generous donations the camp is free for all these children. Flo and Bea had an excellent week of crafts, s'mores, crazy paint games and boating, along with some meaningful evening "cabin chats" with their small groups. They are already looking forward to going back next summer.

I hope the summer has included some fun and relaxation for you even if it did go by all too quickly. Flo and Bea are excited about riding their bikes to school together tomorrow for their first days of fourth and sixth grades.

I also want to tell you that Robbie and the girls and I (hopefully I will be feeling up for it) are participating in our local Get Your Rear In Gear run/walk at Gould Hill Orchard in Hopkinton on September 8th.  We would love it if you want to join us for the walk. This annual event is organized by the Colon Cancer Coalition an organization that works to increase screening and raise awareness of colon cancer, especially among the under-50 crowd. The funds raised at this event go directly back to our community.  You can sign up to join us or contribute to our effort at:  http://join.coloncancercoalition.org/goto/juliana

back home in time for shark week

"Ding, dong the witch is dead," is what I was singing in my head as I was coming out of anesthesia on Friday morning following the successful take down. Though I was not feeling up for celebrating at that moment, or even so much as opening my eyes for that matter, somewhere inside me little embers of happiness were glowing, knowing that Oscar had kicked the can. 

Joie, "squish to activate joy!"

Coming out of anesthesia is always the worst part of surgery for me. But it is such a hazy relief to wake up to Robbie sitting by my side and this time, in my hand I was holding Joie, a little stuffed hedgehog that Flo and Bea made for me. Knowing that Robbie and I would be leaving for the hospital Friday morning at 3 am, the girls set their alarm for 2:30 am to come up to our bedroom and give us a little bag of special notes and Joie himself, the hedgehog they had stayed up late making. Taped on top of the bag was another note scrawled in purple crayon saying, "Don't open until you are at the hospital!"  The note accompanying Joie explained that I could, "squish her to activate joy! and also rub her soft belly and ears!"  Joie stayed with me the whole time I was in the hospital. He was indeed joyful to see Flo and Bea when they arrived on Saturday morning with their big smiles and warm hugs but not as joyful as I was to see them! And not as happy as we all were to get in our car together on Saturday afternoon heading north to NH.

I continue to be grateful for the capable, kind, knowledgeable and experienced doctors and nurses at Dana Farber and Brigham & Women's in whose hands I always feel so well cared for. Although I generally enter the building at 75 Francis Street knowing I am there for an exam, or a scan or surgery, I feel a strange sense of comfort when I circle through the revolving door and smell the coffee and pastries from Au Bon Pain. I suppose its a feeling of belonging in a world where having cancer often makes me feel out of sorts and out of place.

Then again, as much as enjoy being there, knowing I am in competent hands and "enjoying" the hospital cream of rice and mashed potatoes, I was equally elated to be freed from room 20-2 in Tower 1 on Saturday afternoon in time to be back home snuggled up in my bed reading with Robbie and the girls before bedtime. 

And now, please stay tuned for a quick PSA in honor of SHARK week and your butt!

Please folks--cover your butt, check your colon and then proceed
with your shark week celebrations.  

Colon cancer is rising at alarming rates among the under-50 crowd. In the last 24 years colorectal cancer has risen 51%.  In the next 12 years it is predicted that among young adults, ages 20-45 the incidence of colon cancer will increase by 90% and rectal cancer by 124% (American Cancer Society).  No family history required!  I know it's more fun to talk about sharks, than your butt, but please pay attention to any new or unusual symptoms and talk to your doctor if you have questions or concerns.  When found early colon cancer has good survival rates.

Oscar was taken down!

Surgery yesterday was successful!  Oscar is gone and I should be able to go home on Sunday.  
Thank you for all your well wishes!