Results Days

This is not so much about today's results (that will likely be tomorrow's post) but about results days generally. There is definitely a heightened tension. Part of it is just the sheer frustration of not knowing how much the disease has progressed. Another part is starting to think about options, what do we do next if it continues to progress, and how to tell loved ones. Then you also start thinking about what else you could have done. Are you seeing the right oncologist (yes), is it time to go to a specialist center for a consultation, are we eating the right things and taking the right supplements.

A Funny Example of the Difference in Gender

We had a funny exchange a while back illustrative of the difference between men and women. We had received some not so good news, and were in the days following that. Clearly emotions were running high, between concerned and forward looking to possible treatment options. But there are times when you are not researching or talking but simply stewing in your own juices trying to make sense of it all (and of course it doesn't make any sense...). After a few days, we were sitting in our cozy little spot, and she asked me a question.

FDA approval of Ipilimumab

Meagan is on week 14 of her Ipilimumab treatment.  This is a biological treatment, not a chemotherapy, and one of the most promising developments in the treatment of metastatic melanoma. The treatment consisted of 4 infusions of the drug every three weeks, with a scan at the start, a scan at week 12, and one scheduled for week 16. Ipilimumab has not yet been approved by the FDA. That is scheduled for March 26, 2011. She is not part of the clinical trial, although the cost of the treatment is being covered by the sponsoring drug company. She is on what as known as compassionate use status.  It's that period in between conclusion of the clinical trials and before approval by FDA (looking at safety data and success rates).  They still use the data gathered by patients on compassionate use for safety and efficacy.

No Cancer After 5

Once you have a metastatic cancer (Stage 4 - meaning it has spread and can only be eliminated by systemic treatment - i.e., whole body chemotherapy or biological therapy - not spot treatment such as surgical removal or radiation of a tumor), especially one like melanoma that does not have a reliable and relatively predictable treatment path to being NED (no evidence of disease), cancer does sort of become a 24x7, 7 day a week discussion.  It may be a discussion in your own head, it may be in your dreams, or it may be between the two of you.  As a cabana boy, it is constantly on my mind.  I mean, I worry about other things too, like the boys.  Life goes on, you still have to pay the bills and pick up dog poop.  But it's never away from your mind.  When I'm with Meagan it often becomes a topic - spoken or unspoken.  Even the amazing rituals we have adopted, like our matcha tea in the morning, as lovely as they are, have a root cause in the cancer.

Words

One of things that is curious to me is the language used in describing the process of becoming disease (cancer specifically) free.  It's quite militaristic.  One is "battling" cancer, or "fighting" cancer.  The cancer is "attacking" your body.  One is "winning the battle".  Or "losing". It's particularly ubiquitous around breast cancer, because it is so prominent, and because so many are now surviving it.  Maybe it's because the large charity organizations (Livestrong, Komen Race for the Cure) have incorporated athletic events into their community building and fundraising and that culture of competition and success means the language of sport moves into the language of disease management.

Maybe if the language shifted it would help people address becoming cancer free in a more holistic way.  What if it was the language of gardening?  One has to weed the garden of cancer.  One has to nurture the garden with the right nutrients (antioxidants) and avoid use of pesticides (refined starches, alcohol, sugar). One wants to move the cancer to the compost heap.  Thinking in positive, nurturing ways about restoring one's health - would that make any difference in outcomes?

Why doesn't melanoma have a color?

It's bad enough to have a scary disease like Stage 4 melanoma.  You'd at least think it would deserve some sort of color in recognition.  Heart disease is the leading cause of death for women - it gets Red.  Cancer is the second leading cause of death for women.  Breast cancer is the second most common form of cancer in women, and it gets Pink.  One in eight women will get breast cancer.  The most common cancer for women is skin cancer (melanoma).  But if it's caught early, it can be cured as it is one of the least deadly at that stage.

Livestrong has co-opted yellow for its cancer campaign.

Melanoma does have a nickname - "melasuckanoma".  But not too catchy.  I'm particularly fond of the general cancer slogans, especially the pithy ones, such as, "F*ck Cancer".  I have a wool cap that says that.  There are days I even wear it.

Because of my lavender tattoo, and the properties of the lavender plant, I am declaring Lavender to be the Official Color of Melanoma.

The Waterslide

It's been about nine months since our cancer journey began.  If I had to describe what it's been like in terms of some water park slide, it started out as slow gentle descent, then a quick downward plunge (biopsy revealed malignant cancer), a steep long downward incline (culminating with the first surgery to remove the supposed breast cancer), a flattening out as we absorbed the treatment regime to come as typical for breast cancer patients (surgery, chemo, radiation) - even though at that time we believed she had the more difficult to address "triple negative" breast cancer- a cancer that was not caused by 3 different estrogen fuel sources.  Then a rise from hope and optimism (a false rise), followed by a steep long downward spiral after the second surgery and diagnosis of Stage 4 melanoma (hard to forget that 10:15pm call from our oncologist in late August).  Since then it has been a series of drops and rises on a slow descent. Sometimes some really sharp drops, such as when we had to tell the boys over Skype. The rises are all based on hopes for treatment, and the periods of time in between scans or doctor visits, helped enormously by positive events in our lives (boys coming home for the holidays, Meagan's 50th birthday party). The dips and drops are based on treatment ineffectiveness, switching to different treatment regimes, and thinking about and discussing prognosis and outcomes.  At times we have periods of relative stability where we aren't thinking so much about cancer.
It's difficult to describe how challenging it is to deal with this emotional roller coaster (yes,switching metaphors here). We've had various bits of advice offered - from adopting a martial artist (ninja) mindset (bend like a willow, but remain strongly rooted and balanced) to adopting coping tools (meditation, yoga, exercise,and of course therapy, and medication - anti-anxiety and anti-depressants).  Humor has helped- like when Meagan suggested she could get a tattoo connecting all the scars from her surgeries and form some sort of constellation. Or when we realized that it might be possible she would go through menopause twice if the melanoma was unrelated to her hormones and she went off the drugs which induced menopause. I would be like Job in the bible- a wife with cancer, going through menopause twice, what next, a plague of locusts?

Our Cancer Fighting Breakfast

Many have asked for the recipe for our oatmeal "plus" breakfast. Melanoma is an immune system cancer (possibly aided by hormone fueling). So we are really trying to focus on eating anti-inflammatory foods. Turmeric and cinnamon are two spices known for their anti-inflammatory properties. For the turmeric to be effectively absorbed you need to add a bit of pepper. In Meagan's case our M.D./naturopath doc recommended taking an additional supplement turmeric- so we picked up the New Chapter brand TurmericForce, the 400mg soft gel capsules.

Here is our morning breakfast recipe:

1/2 cup of oatmeal
1/4 teaspoon turmeric
1/2 teaspoon cinnamon
pinch of pepper
about 5 almonds chopped
10-15 raisins
1/2 teaspoon brown sugar
then add either milk or water (your preference) to cover
microwave for 2 minutes or so

Then for a special treat and added soluble fiber and nutrition - sprinkle on about a tablespoon of chia seeds. Yes, like in chia pet. Chia is a superfood (like quinoa). It was considered one of the most important foods of the Aztecs and used as currency. Because it absorbs 9 times its size in water it was a heck of a food to consume if you were headed out on a long march. It does have to be refrigerated. The chia seeds,not the oatmeal.

I can tell you this breakfast sticks to your ribs - perfect for lumberjacking days up at our place on Decatur Island.

Should you become an "expert",and if so, how?

Your chief job as cabana boy is to fight for her - support her, yes - but the whole process from initial discovery to diagnosis to treatment is confusing, complicated, not black and white in terms of choices and consequences, and if she is in the midst of trying to cope emotionally who else is going to be the one to help? Most of the hospitals do not have it figured out yet, to make it easy for you. In the business world you can hire system integrators who can assess your situation and then bring you a total solution, without you having to worry about which silo any particular part of the solution came from. Cancer care is still pretty specialized, you have your surgeon, your oncologist, your radiologist, and then if you are in a clinical trial, your clinical research nurse. They have started a person at Swedish Hospital who is supposed to be a single point of contact and help you navigate the system. Bad solution. Because all they are trying to do is figure out how to help you deal with the silos, rather than fixing the problem. We were fortunate to be able to ask, and have our oncologist commit to being our team quarterback. That helps, but I suspect the average person is shuttled from one part of the process to another without an overall perspective on where they are are going and being able to have an integrated view. I shudder to think of the people who are not educated patients able to devote time to working both the system and the range of solutions.

Scum sucking shysters

What if I promised you a cure for your metastatic cancer, especially for a cancer that traditional medicine has a hard time addressing? Would you fly to Tijuana and undergo exotic treatments? Would you fly to New York and consume 174 capsules of pig pancreas each day, along with 2 coffee enemas each day to help expel the bad stuff out your body? I think it was two decades or so ago that the rage was going to Mexico and getting injected with ground up apricot pits. Now, I’m not one to say that natural products aren’t good for you - in terms of their immune boosting properties and cancer fighting abilities. We are just ramping up our efforts in that area - more supplements and “juicing” and a commitment to organic - especially important when you have an immune system cancer. But - there are still “practitioners” out there offering cures that are outside of mainstream medicine. It’s not that they just don’t work, in many cases they are worse - they can harm you or kill you. There is one reasonably prominent person out there, a Dr. Gonzalez, who has a website with “testimonials” from patients about the success they have enjoyed using his “treatment”. Yet, when you do a little digging, you find out this doc had his license revoked in New York at one point for a variety of skullduggery, and most importantly, when he was finally able to get a controlled test at the National Institute of Health (NIH) his patients did worse than the control group. So you do have to be careful of these claims - and do some research on the good forums relating to the specific cancer. For example, the Melanoma research Foundation has an excellent forum and you can search quite easily on past discussions and see where claims have been debunked. Snake oil salespeople still exist!