As a cancer warrior since May 2013, I have had a lot of experience living with the an uncertain future. For three years, from May 2014 through May 2017, I have had the pleasure of being No Evidence of Disease (N.E.D.) from colon cancer. Hence, I have not been posting much. No news is good news, right?!
What Does NED Really Mean?
NED describes a point in time having no signs or symptoms of cancer nor any evidence of cancer on imaging methods available at this time. NED may be temporary, or it could be permanent. NED does not mean that the disease had been cured (a term rarely used by doctors anymore), since recurrence can't entirely be ruled out. To be classified as NED means there is no evidence of any cancer present that can be detected by studies such as blood tumor markers, CT, MRI, bone or PET scans. It is impossible to know if there are "micrometastases" present in your body - that is, metastases which are too small to be seen on imaging studies. We know a bit about how cancer spreads, but we don't know exactly why some cancers return years later. [from: www.verywell.com]
Scans from May 30th (CT) and June 6th (PET) 2017, both show a small 5mm round change/"spot" in my right lung near the site of my previous cyberknife radiation that was not present in my March 3rd, 2017 scan. This spot could be caused by inflammation or it could be a tumor indicating a metastatic recurrence. The June 6th PET scan failed to definitely determine if it was a tumor with uptake of the sugar material only a bit above baseline. This spot is too small to biopsy or treat, so what is the plan....we wait and rescan. In mid August, I will have another scan to see if the spot has grown. If it does, it defines itself as a tumor. If it goes away on it's own, this indicating that it was just an inflammatory process that resolved itself. So, we wait....How Am I Managing?
I am often asked, "how are you dealing with this new unknown?" I have been through a lot of emotions since learning that I may have a recurrence. Part of me wanted to believe that it is likely inflammation and hope it will just be gone on the next scan. I am too much of a realist for that. I always knew that statistically recurrence was a high probability, but felt like I was on such a positive track that, honestly, I believed I would be one of the lucky ones who beat it completely the first time. As I have not had a cough, bad cold, bronchitis/pneumonia like stuff going on in my chest in recent weeks, I am feeling there is not enough evidence to support that an inflammatory process in my lungs is likely. I feel like there is a good likelihood that this new spot is a tumor, so I am am emotionally and physically preparing myself for the likelihood that I will need go back into battle to kill off this new growth. If the spot is gone in the next scan I will be pleasantly relieved, but I would rather prepare myself for the worst and be ready. My doctors did not discuss a treatment plan as the diagnosis is not yet clear; however, I am confident that we can either remove a new tumor with radiation or surgery as we did before. In the mean time, I am focusing on eating healthy, staying active with hiking and tennis, meditating routinely to stay centered and positive. Anxiety can creep in all too easily if I let myself think too far ahead. I remind myself routinely to breathe, reflect on the current moment, and enjoy life and all that it brings. My daily mantra is "Right hear, right now, life is good.... breathe in, breathe out, be grateful, and enjoy every moment."The Joys of Lingering Post Treatment Side Effects
I really do not like to focus on the negative, so I have avoided discussing the post chemo, radiation and surgery issues that impact my daily life. In case you were thinking it must be nice to be a cancer survivor and play tennis & hike every day. I assure you that this last year has brought a new crop of side effects that has kept me rather busy visiting doctors and running to the pharmacy. I will spare you the exhausting details, but this is a summary of the latest fun times... ;-):
- Dry mouth & eyes with mouth rash - work-up including 5 different specialist (ophthalmologist, ENT, dentist, hematologist, and dermatologist) & multiple tests that finally resulted in a diagnosis of Oral Lichen Planus due to an Allergy to Gold (presumably triggered by chemotherapy) requiring me to remove 3 gold crowns and 4 gold inlays over the next several months. :-( $$$😩
- A blood clot in my internal jugular vein near my MediPort insertion site. I am required to be on 3-6 months of anticoagulation therapy until the clot resolves, and I recently had my MediPort removed.
- On a positive note: in May I had a colonoscopy that showed no signs of cancer. I had 3 small polyps that were removed and all tested for normal cells. They did several biopsies randomly throughout my colon and all revealed normal cells and no signs of inflammation 💩! Are you due for a colonoscopy? Don't delay, it could save your life!
My passion to raise awareness and the prevention of Colon Cancer continues stronger than ever. I support the efforts of American Cancer Society in finding a cure and providing care for those affected by cancer.I am again participating in Relay for Life Saratoga-Los Gatos at St. Andrew's on July 22-23rd, 2017 10AM-10AM. This year they have asked me to speak during the Luminaria ceremony. Please come out anytime during the event and walk with me to show your support.
If you would like to join the team or make a small donation to help Team Love Your Butt meet their fundraising goals, it would be very appreciated: http://main.acsevents.org/goto/loveyourbutt. Thank you!!! 💙
Still Following the Latest in Fighting Cancer with Nutrition
- Colon cancer survivors who ate at least two ounces (57 grams) of tree nuts a week - roughly 48 almonds or 36 cashews - were significantly less likely to have their cancer return or to die from their cancer than those who did not eat nuts. Reference Here
- The benefits of a Mediterranean diet are well known when it comes to colorectal protection, but it’s hard to know specifically what elements of the diet are the healthiest. Now a new study, presented suggests that increasing consumption of fish and fruit and reducing soft drink consumption are the three most important components. Reference Here
Life Has Been Full of Good Things
This Spring has brought some special milestones to the Berlinberg Family. Jenna survived the college application process, graduated from Kehillah Jewish HS, and is preparing to attend Loyola Marymount University in Los Angeles in the fall. Kayla finished her Junior year at UW studying Communications and Sales. She enjoyed completing a sales internship this spring and is looking forward to her senior year! In June Elyse graduated from UCLA with a BS in Biochemistry and minor in Global Studies. Elyse is taking a gap year to pursuing medical research while applying to medical schools. We are so proud of our girls and enjoy watching them grow into smart beautiful young women!
I hope you had a wonderful July 4th! 💥
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