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!

another surgery, but this time it's a "good one"

Another good news update!  Surgery to reverse my ileostomy is scheduled for this Friday July 20th. While I am thrilled that I will likely be able to say goodbye to this ileostomy bag, aka:oscar the pouch, I am admittedly nervous about yet another surgery and another recovery.  The recovery from the last one in May was longer and slower than I would have liked, but I am finally feeling pretty good and able to walk several miles a day now. My abdomen looks and feels like a battlefield, but I think most of the soldiers are winning. I find it amusing that on my surgery paperwork, the reversal is referred to as a "take down." I like to imagine that we are "taking down" all the cancer enemies. Following surgery, my disheveled digestive system, which I once took for granted should be working somewhat normally again within a few months, though I know from others that this may be a long and gradual process.

Oscar the pouch aside, summer has been lovely-starting with a weekend in Maine to celebrate the end of the school year. Flo just returned from two weeks at overnight camp in NH. We were elated to see her again at the end of two weeks, but I think she would have been happy to stay a little longer. Beatrice survived her time as an only child, though she did write (endearing letters) to Flo most days and seeing them hug each other when we went to pick Flo up last week, made me cry just a bit.

The last day of school!

Learning to live with an ileostomy has 
been a much greater challenge than I had prepared myself for. For most of my 
cancer journey so far it hasn't been too difficult, when the sun is shining and I 
am feeling good, to forget that I have 
cancer. But that changed with the ileostomy bag, which is a constant reminder of what 
I am dealing with in spite of my best intentions to put it all out of my mind.

On one of my first outings after surgery, 
our good friends took us to see one of my favorite musicians John Prine. One of the things that can happen with a bag is that 
they can leak, which is about the nightmare you might imagine it to be, and if you can't imagine this particular scenario, then consider yourself lucky. I was nervous. We walked into the theatre in Concord where we have been to many concerts, and for the first time ever there was a police officer checking people's purses and bags at the door. (This is not a common occurrence in Concord, NH!)  The bag I was carrying was not small, as it contained all the supplies I could possibly need in the event of an ileostomy emergency. The officer of course pulled some of the supplies out of my bag and asked what they were.  I told him, with some embarrassment that these were supplies for my ileostomy. He nodded his head and said, "next."  Anyhow the concert was wonderful, wonderful enough that I mostly forgot about my bag, I forgot to worry about a potential leak and all was copacetic.

I won't bore, or horrify you, more accurately with details of life with an ileostomy bag, but again it has been a case of taking a crash course to learn about something I wish I never had to know about. Living with oscar means eating a very low fiber diet, to include no fresh fruits or veggies, no whole grains, nuts or seeds, among other healthy foods. So ironically as I am being treated for cancer, I find myself eating what feels like a poor diet compared to my usual.

My staples these days are things like white bread, cheese and crackers, scrambled eggs, some well-cooked meat and vegetables, and yogurt. I can and do eat bananas, avocados, applesauce, mashed potatoes and V8 juice in hopes of getting some vitamins.  Additionally because my sodium levels have been low and I have lost weight I have added potato chips and Ben & Jerry's (peanut butter cup is the best-thank you Lissa!) to my diet at the recommendation of my nurse. Flo and Bea think that having white bread and potato chips in the house is pretty exciting.

a sparkling morning in Maine

Robbie and I spent another long day at Dana Farber last Thursday for a scan (fluoroscopy) and meeting with my surgeon to confirm that I could proceed with the reversal surgery this Friday. We learned that while things looked pretty good, there is a small chance that once my trusted surgeon is inside of my body, he may see a potential problem that would mean he could not perform the reversal as planned. While it is hard to think about this unlikely outcome, I find myself walking a fine line between being optimistic and being realistic, something I have found myself doing more over the past 6 months since my diagnosis. Previously, optimism generally felt like an appropriate outlook to me with little reason to think otherwise. However, as I find myself walking down this twisty, bumpy road of cancer, that way too many others travel on as well, I am becoming more familiar with the highs and lows. And while there is pretty much always reason for optimism, optimism can occasionally lead to dreadful disappointment. For now though I will keep my fingers crossed and please feel free to send good thoughts, prayers or good juju my way on Friday morning.  I hope to be back home by Sunday evening.

In closing, I must again tell you how much I appreciate and am humbled by the continual outpouring of support and incoming flow of delicious homemade meals, letters, fun packages, flowers and general daily help, especially with the girls, from so many neighbors, friends and family near and far. It makes such a difference to me and Robbie and the girl to feel surrounded by your LOVE and support and has been invaluable in helping me get through the tough days. Thank you!