Everything Changes - The Guide to Young Adult Cancer

Thyrogen is a damn expensive shot (not always covered by insurance) that simulates the experience of being hypothyroid and allows thyroid cancer patients to undergo full body scans, and sometimes even treatment, while still on their hormones. I have used thyrogen and it is remarkable. While on thyrogen I was able to work and function as a normal human being. It was heaven compared to the other times I had gone hypo without thyrogen and was so fatigued I felt like my marrow hurt, my hands went in and out of paralysis, and I could not physically take care of myself.

So, you can imagine my concern when I learned the FDA announced this week that due to operational manufacturing problems, Genzyme will have to halt production of thyrogen. The injection will be limited to patients whose doctors deem it “medically necessary.” Here is what medical necessity is based on:

1. Patients undergoing initial radioiodine ablation of thyroid tissue remnants, post-thyroidectomy, deemed to be at significantly increased risk of side-effects/complications from undergoing thyroid hormone withdrawal.

2. Follow-up testing of patients considered high risk for thyroid cancer recurrence (those with 1. macroscopic tumor invasion, 2. incomplete tumor resection, 3. distant metastases, and possibly 4. thyroglobulinemia out of proportion to what is seen on the post‑treatment scan) and who have unmeasurable basal thyroglobulin (Tg) levels and are deemed to be at significantly increased risk of side-effects/complications from undergoing thyroid hormone withdrawal.

The FDA has complete information listed here about what qualifies as increased risk of side-effects and complications. If you are concerned about obtaining thyrogen, read the linked info, print it out, take notes, and discuss it with your doctor.

Have you ever gone hypo for full body scans or radioactive iodine treatment? Have you ever used thyrogen before?

To learn more about thyroid cancer, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Facebook and twitter (like a phone or radio) can be used as fluffy, brain draining diversions, or to have sophisticated conversation about issues like access to affordable care and clinical trials. So how do you use social networking to be an educated and effective cancer activist instead of a slacktivist?

Seductive social media campaigns entice us to mobilize our networks to vote for projects where the most popular cause receives money and/ or exposure. (Take the Pepsi Refresh campaign - they’re so brilliant for not buying Superbowl ads this year when they can rent our brains for free on facebook instead.)

The problem with these online campaigns is popularity does not equal value. The popularity of a project, a person, or organization has zero to do with their efficacy, necessity, skills, or smarts. Plus, cancer is about much more than contests, awareness campaigns and fundraising. In fact, most cancer issues that impact our lives are about science, industry, politics, prioritized evidence-based research, and policy. If you don’t understand these words and how they relate to cancer, you will not significantly impact the future of cancer prevention, outcomes, and quality of life measures.

I don’t have a degree in science or public policy. But I know what I’m talking about when I stand in a Senator’s office asking that Congress demand more funding from the National Cancer Institute for young adult research. And, I can write good letters to my newspaper asking that pharma not be allowed to hold a patent the BRCA gene. I’ve educated myself about these issues online, and facebook and twitter have played an increasing role. To make a serious impact as a cancer activist, consider these tips:

1. Multiply By Five.
Keep track: For each tweet or facebook message you post or comment on, spend five minutes reading a journal or news article about healthcare policy or scientific research. The topics and jargon may seem foreign, but the more you read the more you’ll understand. If you don’t have this much time to spend reading, then you’re spending too much time on twitter and facebook!

2. Retweet Only What You Read.
Retweet information only if you have read the entire article/post, have an opinion about it or can ask an intelligent question, know who wrote it and their motives, and think it’s valuable to others. You’ll have fewer tweets/updates going out which in turns elevates the quality, rather than quantity, of conversation in the cancer community.

3. Get Stingy With Your Time and Attention
I don’t waste my brain or clog my inbox by joining any old facebook group. Before supporting an organization ask: Is the staff or director spending more time on facebook and twitter than working on the backbone of their mission? Are they filling a niche high on the list of cancer priorities and goals? Are they willing to speak up on controversial issues if it benefits their constituents? Will they educate me? @bcaction @cancerandcareer are great orgs doing it right!

4. Nix Online Petitions
E-letter and online petitions hold very little weight with elected officials. If you get an online petition, research the cause and if you support it, call your representative and write a letter to the editor.

5. Old Fashioned News Feeds
I still subscribe to daily and weekly email updates from professional sources and journals. Why? Because the smartest, most effective people I know are not spending their time twittering or on facebook. They’re engaged in science and policy and write more than 140 characters about their discoveries.

How much time do you spend on facebook or twitter. Do they change your knowledge or feel like a brain drain? Any tips for making the most of social media?

For more tips about how to spend your cancer time online, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

In response to my post Power of Realistic vs Power of Positive Thinking, H Lee D (aka Heather) left the comment that she’s always spoken about her cancer in the past tense. She said “I had cancer” even before she was cancer free.  This kind of language isn’t for me and isn’t found in my book Everything Changes.  I’ve never been in remission and pretending to be is medically inaccurate and too far from the emotional reality of my life.  Plus, I’ve never seen scientific evidence that our minds or our language can change the biomachanics of our tumors.

But Heather is one smart cookie, who has left dozens of insightful comments on my blog and sparked incredible conversations. So I wanted to better understand why she speaks in the past tense and asked her to write this guest post:

“I had cancer. This is how I spoke of the tumor in my chest, even before my first chemo treatment - in the past tense. My choice of language wasn’t denial — I was completely aware that after two-and-a-half weeks in the hospital, I had just been diagnosed with lymphoma and needed six months of chemo plus radiation.

Almost a year prior, I attended a three-day work training at the K-8 school where I teach. We learned to create visualizations and affirmations, and how and why they are effective. A piece of the training I used through cancer (and in other parts of my daily life) was putting myself where I wanted to be. Act as if it is so. Fake it til you make it: I had cancer.

My first clean PET scan was two months after my first treatment — earlier than medically anticipated. I believe my use of language, affirmations, visualizations all influenced my clean PET scan, but I certainly don’t give them full credit.

This is the basic premise: Your brain likes things to match. For example, if you believe you are clumsy, your brain helps ensure you trip over nothing, so that you are clumsy. Then your belief and your reality match. If you can convince your brain of something you want but currently aren’t, your brain will do what it needs to do to make everything match. It’s important to choose something you can visualize. For example, I can’t imagine myself running a 4-minute mile, so visualizing it would be futile. But I can imagine myself running a 10-minute mile, so I start there.

I alerted close friends and family that I was planning to speak in the past tense about my cancer hoping that they’d think me slightly less insane. No one said anything to me at the time, but their body language and confessions later revealed that they thought I was nuts.

When I called my mother-in-law to share the good news about my first clean scan, she said, “Well, you were right. I thought you were crazy, but you were right.” The oncology counselor at the hospital told me later that she thought I was in denial but had since come to realize that I just had a different outlook than most.”

How do you speak about your cancer? Have you ever used the past tense and if so when did you start? Do you believe language has the power to change biological processes?

Heather is a 34-year-old teacher, wife, friend, dog-mom, dancer, musician, triathlete, dreamer, personal trainer, not necessarily in that order. Check out her health and fitness blog change-is-possible.net

In the midst of radiation treatment my home was like grand central station with visitors coming and going all day long. I needed the help and the company, and was grateful to have people stopping by.

But for some patients, having visitors isn’t as easy or welcomed. Many folks don’t want anyone around when they look and feel like crap. Others want privacy and alone time. And lots of guests just don’t know how to behave in the best interest of the sickie.  So, I’ve come up with  a list of  tips for both patients and visitors:

For Patients

- Nobody is a mind reader. Email friends and family about your wishes.
- Think about who you are willing to have see you at your worst.
- Let people know if it is not okay to visit at the hospital or at home.
- Clearly broadcast your energy level and the length of visit you’d like.
- Demand people stay away if they have germs.
- If you’ve got a roommate or partner get clear with each other so if you have different desires you don’t send mixed messages to guests.

For Visitors

- Have awareness. The goal is to be helpful, even it means staying away.
- While visiting, ask what you can do to help out around the house.
- Sometimes help without asking. If the trash is full just take it out.
- Never stop by unannounced.
- Don’t overstay your welcome.
- Silence can be comforting. Offer to sit together without talking.
- Think about visiting with the sick person’s kids, partner, or caregiver allowing the sick person time to just rest

What are some of the best and worst stories you have about people who visited you when you were sick? Do you have any tips to add to the list?

Check out more about the dynamics of family and friend visits in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.