Rituals, Centering and Connecting

One of the best things which has come out of our cancer journey is the presence of ritual in our lives. Every morning Meagan prepares our matcha tea (an incredibly powerful antioxident, and what is used in the Japanese Tea Ceremony - although our version is the medium grade, not the ultra expensive tea ceremony version). Using the right bamboo whisk is important and we joke each morning about the amount of froth which is developed through the mixing process (matcha is finely ground tea leaves, and you mix it with water - it is not steeped). We then drink it out of our special, authentic tea bowls our friend Dennis gave to us. It gives us an opportunity to share some time talking about the day ahead, the journey ahead,and what we are grateful for.  Then it's my turn - while she jumps onto Facebook and email - I make the special oatmeal, and serve it up and we share a meal together.

There is something about each of us making and offering to each other the tea and oatmeal that is powerful. It's supportive, an act of kindness, and sets the stage for an ability to connect. We laugh a lot about how much froth there is in the tea, and how we don't drink it properly according to Japanese ritual (or so we've been told). Or how filling the oatmeal is, particularly with the chia seeds. In our world of up and down news about the cancer, this act is very centering and grounding.

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.

Experts and expectations

A short post here - more out of irony and amusement than anything else. Meagan got both a shot of Lupron and started the drug Tamoxifin last week. The goal is to shut down her hormone system, in case (in hope of) the melanoma is being fueled by the hormones. This drug combo was supposed to do the trick. So we were warned that this would be like dropping off a cliff as she "entered" menopause. I do believe it is working (not clear whether it's effective yet). But one week later, no menopause symptoms (hot flashes, night sweats, mood swings - although I am unclear how I would notice this from normal behavior, hahahah). Every day, I am on alert, ready to spring into cabana boy action (Beverly at Katterman's Pharmacy showed us a cool bandana that when wet has crystals inside that keep it cool for hours - what a perfect purchase for cabana boy!). But so far, it's the tension of waiting and again, experts aren't always right.

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.

Locally owned businesses

Time to give a shout out to those locally owned businesses which provide excellent, personalized services. In our case, we are lucky to have Katterman's Pharmacy mere blocks from our house. It's not just the home delivery option. It's not just the quick turnaround when we walk in with an "emergency" prescription ("can we get Meagan started on the Tamoxifin, now!") and get moved up in the queue. It's not just the fact we got the owner's (Beverely) home number and cell phone and invitation to call anytime for any needs. It's all of that, plus the hugs and warmth Beverly gives Meagan. It's bad enough to have a tough cancer to beat and it's great that we have a big posse on our side. Our pharmacy has been right there with us and provided great advice on alternative, over the counter meds for side effects and coordinating the kid's prescriptions when they are back from college. They also have the same capabilities as the big chains with their telephone prescription renewal service. So we are really happy with them, and glad our business can help support them.

Induced menopause

Meagan got a shot in the butt yesterday (Lupron), which along with her daily dose of Tamoxifin, will shut down her hormones and put her into instant menopause. There is rationale for doing this - perhaps there is a link between hormones and melanoma and the hormones are fueling the growth of the melanoma. It’s the “instant” part of this which gives one pause. Also the thought this could be temporary, if it doesn’t work, she’d go off the medications and revert back to her normal hormonal state. That means at some point she would go through menopause AGAIN. I’m clearly rooting for the one time scenario, both as a means of shutting down the spread of the melanoma, as well as potentially avoiding going through mood swings, night sweats and other assorted side effects of the change.

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!

Waiting rooms.....

I’m not a really patient person. But when you’ve got a patient on your hands, waiting is the name of the game. We have spent a lot of time in waiting rooms. Inevitably we bring a host of things to keep us occupied: iPhone, books, Kindle, magazines. Often I just end up people watching. Mostly we use our iPhones and update Facebook, check and write emails, respond to text messages from our concerned friends, or I sometimes play Scrabble - an iPhone app. When we are together we are often holding hands so you learn the art of one hand iPhone manipulation. But when she’s off getting blood draws or scans it’s just me hanging out. I like to watch the reception staff - it tells you a lot about the ethos of the place. Swedish Cancer Institute is great - they greet people and get to know people and you hear a lot of “Hi Honey”, or Hi Sweetie”. Lots of arm touching and small hugs - pretty meaningful to the people in for treatment. It’s interesting to see the range of people, meaning at various stages of treatment. The ones in the thick of it - looking and feeling pretty awful. Offset by the ones who have come out the other side, hair growing back, a pep in their step, a smile on their face. Of course Meagan looks fantastic, as she doesn’t appear to have cancer, so sometimes you get the feeling people are looking at her and wondering, what the hell is she doing here messing up our ‘hood - this is for CANCER patients. I sometimes feel like standing up and announcing, “we are here for a reason - my lovely wife has fuckin’ metastatic melanoma!”. Being the well behaved person I am, I don’t though, I just smile sweetly when we make eye contact and I see the curiosity in their eyes. Keeps ‘em guessing.

Juicing, your immune system and cancer

I confess, we have two refrigerators. The one in the back room has, up until now, been used mainly for beverages. It has now become home to a twenty pound bag of “juicing” carrots and two pounds of kale. Two pounds of kale is about the size of a microwave oven. In the future it will likely look like the organic vegetable section of Whole Foods, stuffed with beets, broccoli, kale and carrots. All of which will last about 2-3 days. I understand and appreciate all the reasons for juicing. We discovered “Thrive”, an excellent raw and juice place up on Roosevelt and 65th. They have great juices, smoothies and salads. Meagan needs to get 10 helpings of vegetables each day for their nutritional and cancer fighting properties. But eating that much - cooked or raw - would be impossible. So juicing is us. We bought a nifty machine today. It will mean we will need to go to the store quite often to get the veggies, a big change in lifestyle aside from drinking the damn stuff. Although the suggestion to mix in some organic apple cider is a good one and should make it quite tasty. I thought juicing was only something those old hippies did. Turns out it could be quite the life saver - pun intended.