My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, July 29, 2010

Back again!

Sorry I’ve been gone so long! I went on an 8 day trip with my backpacking buddy to the Porcupine Mountains in the Upper Peninsula of Michigan. She doesn’t like hiking in the heat, and it was the coolest place I could think of (70s in the day, 50s at night). In the end we drove about 1600 miles and hiked about 30-35 miles of wilderness. We saw a peregrine falcon, three bald eagles, lots of evidence of wolves, snakes and even a black bear (it crossed the road when we were driving home!).

I love backpacking..the physical challenge, undisturbed nature, the hiking. I over-packed my backpack, I think it weighed close to 40 lbs. Backpacking makes me appreciate lots of things I normally take for granted…unlimited water, unlimited food, easy access to communication. We don’t get cell phone access most places we backpack and of course have no computer communication (it’s actually really nice to have a break from the “electronic world”). My partner is a paramedic and I’m a nurse, that’s kind of nice as in case of emergency we can’t call 911. There was a sign posted at the trailheads saying to be careful as “medical help is hours away”.

I packed few clothes and a lot of food; I am all about size and weight when we backpack. I love the little stove I’ve had for years, an alcohol stove. The stove and enough fuel (alcohol tablets) to last the better part of a week is about the size and weight of a deck of cards. My weaknesses are my inflatable Big Agnes mattress (2 lbs.), and books I carry as I read myself to sleep every night (4lbs….maybe I’ll invest in a Kindle for next time?). I also carry at least 3 liters of water every day (over 6 lbs) and a bigger tent I love (4 lbs.). My backpack itself weighs 3 lbs. I don’t know how, but the pounds add up! I took a water filter (1.5 lbs) that ended up not working. Don’t laugh, I filtered sediment from water with my clothes and then chemically treated it with Aquamira. I think next time I won’t bring a filter! The treated water was still tan colored from the tannin in the water, but still worked well for coffee with the new Starbucks instant every morning.

Next year I plan to backpack Isle Royale, an island only accessible by a three hour ferry or float plane. The island is a national park and backpackers dream.

When I got back, I worked a lot of hours at my job, and on my off day had my colonoscopy. I truly hate doing the prep and procedure with the IV start and hospital gown. I now hate any form of cancer testing. I don’t want to be a patient again!!! And I’m a bad IV start nowadays, post chemo and a million labs it takes multiple sticks usually to access my veins. They did get me in one stick this time, though!

I guess in the back of my mind I remember how quickly “normal” life can become “life altering” with just one test. I always have polyps that are pre-cursors to colon cancer. This time I waited over 3 years for my colonoscopy vs. the recommended 2. They only found one polyp this time, so my doc said I can go to three years between colonoscopies…yeah!!


Lally said...

DEAR CAROLYN,It was great reading your blog- so encouraging. A good friend of mine has singet ring cell coloraectal adeno carcinoma. This is the third reoccurance of his cancer and he went through a massive surgery (Total Pelvic Exenteration) with peritoneal chemotherapy (combined with heating)administered just after the surgery. In your blog you had written that you were given this treatment, but chemo was given abdomenaly after the surgery for several cycles thereafter. I was wondering if you could provide some more details about the treatment - Didnt they "close" the operated region? How were they able to give you several cycles after the surgery, right into the abdoment? Also, After the peritoneal chemotherapy, what were the IV drugs that were given to you in combination?
My friend has to decide what to choose- such an agressive cancer, maybe your succeess could also be a good choice for him. Many thanks to you, and many more years of good health. If possible, please reply to my email:

Alice said...

I had the chemo you are describing (same as Carolyn). It wasn't heated chemo. A belly port was placed that simply drained into the belly (peritoneal cavity) as part of the surgery. Every other week, 4 liters of chemo (FUDR) was infused in (2L on the first day, 1 L each day 2 and day 3). The chemo is left to resorb by itself; it is not drained. After several months of that, I had several months of IV chemo - Folfox + avastin, through a chest port. I'm doing great now. The belly port was removed in an out-patient clinic environment.

(Mine is "Alice's Story", referred to on the home page of this blog.)

Anonymous said...

Hi C.,
Reading your last blog has reminded me: I thought about letting my GCC (possible recurrence, diagnosis Jan./'10) rule me for the next 5 years, but not for long. I think that I will go hiking and mountain biking instead. For me this means moving back to the rural Great Basin Desert (I love the starkness and daily dangers even if they are not disease related), consequences be darned insofar as no availability of medical facilities. 5 more years of old growth forest green would drive me nuts. I am available for itinerary management for the back country of the G.B.D., including Az., Col., N. M., (epicenter) southern Utah, if any cancer survivors would be interested. I know the sights (like the back of my hand) not available to traditional "tourists", including ancient American Indian archaeology & art, hiking, mt. biking, and geologic astonishments.
This is not an ad as I don't do it for a living. Just like to help as you do.