Tuesday, August 10, 2010

Note to Self...

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. ~Lance Armstrong

I am fighting against becoming someone I'm not - someone who is afraid that when they wake up, there will be a new hurt to deal with; someone who doesn't want to leave the house for fear that they will become sick in public; someone who scrutinizes every twinge and pain for a sign that something is wrong.

Cancer is a betrayal by our bodies - and carcinoid cancer is long-term betrayal. Although carcinoid malignancy rates are widely debated in the medical community, many estimate that it takes on average 3-5 years for a neuroendocrine tumor to reach 2cm. My tumor was 3cm, so it must have eluded detection for years - maybe even a decade. How can I trust my body anymore to, as Spike Lee would say, "do the right thing"? I guess the answer is, I can't - none of us can. All we can do is try our best at prevention and healthy living, and hope that the doctors and medical field continue to make advances in early detection and treatment.

However, while I may have limited control over my physical well-being, I have complete control over my psychological and spiritual well-being. I truly believe that happiness is a choice, and not something that just happens to us. I can choose to face the day with fear or with fervor; with weakness or with strength. Lately, I've let my emotions drift from the safety and joy of the "now" to unfounded future anxieties and scary memories of the past. Today, I'm going to have ice-cream and go for a walk, and smile because I know that simply breathing means - anything is possible.


  1. Hi--i just discovered your blog and wanted to say hello...

    I am a carcinoid cancer survivor as well! I relate very much to what you've written here...and have often considered my own cancer a betrayl. My tumor was quite large (15 cm) and my doctors think i could have had it for at least a decade. To think that it was there and growing and that I never knew felt very strange and hurtful. But, as you stated above, we can only control our own attitude and outlook on life despite this carcinoid.

    My blog and my story is here...
    visit if you like:

  2. I am reading your blog and understand where you are coming from. And I will be reading about your journey hopefully for many years to come. Know you are not alone in this and there support out there to help with the journey.

    I was dx in 2001 after 7 years of searching. Please know there are many 20 to 30 year survivors out there. And that the data of survival is old in many cases. That the past 10 years there have been great improvements in the treatment of this disease. We still have far to go.
    The main goal is to catch the disease early and to make sure you are getting proper treatments . But the most important thing is to stay on top of testing, including CT scans Blood work ( many times will show a change before a scan), Orctreotide scan, and your treatments .Some may include surgery, chemo emobilization, RFA and with octreotide these are just a few options patients have.

    As a founder of The Carcinoid Cancer Awareness Network, Our mission is to intensify the awareness of Neuroendocrine Tumors & Carcinoid Cancer in the medical community and general public around the world. CCAN also assists patients, caregivers and support groups worldwide by providing access to important & updated information about the disease. Through the years CCAN has produced 19 conferences. Many are available to view on our website. DVD’s & CD ROMS are also available. Our toll free phone support line is answered only by a patient and caregiver 7 days a week. We also send patients free information packs. If we can assist you our anyone reading your blog . Call 866 850 9555. or got to www,carcinoidawareness.org

    Maryann Wahmann .

  3. Thank you Maryann for the wonderful information!

  4. Stephanie - thanks for sharing your story, and leading me to your blog! It's visually stunning, and has some great carcinoid information (and recipes - especially the one bowl chocolate cupcakes). I look forward to reading about your future adventures.

  5. Thanks Marlena! This journey has been such a sobering experience. I felt completely healthy and then ended up having to have a major surgery all within the course of 3 months! Recovery felt like it took forever, but fortunately, I feel great now. Baking and doing things that I was so scared that cancer was going to take away. I wish you all the best in your own recovery and am glad that you are doing well and staying positive, which is sooo very important.