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.

Monday, September 27, 2010

Leaving again!

I will be leaving again in a few days for a trip to Miami to attend the American Association for Cancer Research's Cancer Disparities Conference. I will attend as part of the Scientist-Survivor Program. I was very grateful for the invitation. I'm sure I will learn a lot.

As I travel more as a cancer advocate, I've taken to extending travels one day for my own site-seeing/discovery purposes. I never traveled in my younger years, so enjoy seeing different parts of the country now. For fun I try to eat the local food wherever I go. In Florida last time, I tried alligator (tastes like chicken but with the texture of shrimp). I tried skate wings in San Diego and LOVED them; skate wings are the "wings" of a creature similar to a mantaray. In Maryland I tried a soft-shelled blue crab (you eat the shell!) and a crab cake sandwich, which they are famous for. I struggled with trying a crab cake sandwich, as a "cake" sandwich kind of sounds like bread on bread? I tried a crab cake in Chicago once, and it was like a muffin with crab meat chunks in it. But, last minute, just an hour before I left Maryland, I tried one. There is no "cake" in Maryland crab cakes, just crab. The crab cake sandwich was the best sandwich I've ever eaten! I also tried shark nuggets in Maryland, kind of like fish with the texture of chicken, just the opposite of alligator. Last year on vacation, my husband and I tried snails...they were great too (they were disguised so they didn't look like snails). Food can be fun!

One thing I've noticed since surviving cancer, I'm less intimidated or afraid of the unknown. I love to fly now (beats road trips like the 1600 mile backpacking trip I recently went on). I used to be afraid to "fender benders" in the sky. I don't worry about plane crashes anymore. Maybe I finally got it that I can't always be in control?

Kind of interesting, since I travel more, I actually have enough frequent flyer miles for one free flight. I think I will use them for next year's "Heat it to Beat It" in Maryland....and I will for sure have another crab cake sandwich when I'm there! Blue crab was good, but the crab cake sandwiches are better, even better than shark! And I will stay at the same hotel that offers unlimited free milk. I drink several glasses of milk a day and when I travel I go into milk withdrawal. I loved being in a hotel that had unlimited free milk 24/7!

I am so grateful now, as a nine year cancer-free survivor that I don't have the life I had "before cancer", but I can look into the future and make plans again. Not for the distant future, but I can again say the words "next year", which I couldn't for a long time after my diagnosis. My "next year" plans are still tentative, as I no longer assume tomorrow, but I am more comfortable in looking towards the future. I know I am blessed in that sense....for years I only lived my life between 6 month CT scans. I am finally past that now. I don't take tomorrow for granted, but I can now at least contemplate a tomorrow.


Anonymous said...

Hi Carolyn: I wanted to ask your advise or wisdome: Today I got a prognosis of 15% chance of making it to 5 yeasrs. Dr. Bartlett told me that there is an 85% chance that the cancer will return with HIPEC. Those numbers don't give me much hope. I need some help. Any suggestions?

Thanks again, Kelly O'Handly

Anonymous said...

I was in Scotland a week ago and there was an article in their newspaper about cytoreduction surgery and HIPEC. It said this treatment is available at 2 hospitals in England and one in Scotland.

Alice said...

I was initially given percentages such as yours in terms of expected recurrence, tho with the caveat that they will be able to treat again. I was treated at MSK

Now, 3 years later, the drs are talking about the possibility of no recurrence.

I had IP chemo and systemic (not HIPEC)for mucinous adencarcinoma. I was diagnosed 3 1/2 years ago, and am feeling great now.

Statistics refer to a group - you are an individual. Statistically speaking, the likelihood of us having appendix cancer is virtually nil - yet we have it. Dr. Bartlett has an excellent reputation, but if you're more comfortable getting another opinion, you might want to go to MSK. While they refer out for HIPEC now, they do not view that as the only treatment for appendix cancer, depending on the tumor type and involvement. A second opinion there would allow a step out of the tightly knit world of HIPEC, however, where HIPEC is a serious consideration.

Good luck.

Carolyn Langlie-Lesnik RN BSN said...

Hi Kelly,

For what it's worth, I was given the same 15% odds of survival after treatment...9 years ago! Alice is right, stats are useful for research, but not individual predictions. And if there is a 15% chance of survival, why can't you be in that 15%? Someone's got to be! Hang in there! Carolyn