Old Neighborhood, New Walks

We've lived in this neighborhood since 1993. We haven't always walked regularly, but pretty often and more so of late. Sometimes on the weekends with friends. Before her stroke we walked at least once once a week together (Meagan has her separate, usual Friday morning walks with friends). We do about an hour, usually a loop. We have our favorite loops from our house.

So here is the beauty of brain damage. We went for a walk today. Meagan said, "let's go walk that area behind Husky Stadium near the golf range, we've never walked there before". She meant from our house to the UW Horticultural Center and then the walk through the Union Bay Natural Resources Area, out to the edge of Lake Washington, We've NEVER walked this before. In fact we have NEVER walked it at least a dozen times. If you take out the word NEVER before the last two sentences, the statements are true.

She was a good sport about it. She definitely saw it with new eyes and everything was interesting and new. I like the walk a lot; and we saw eagles and plenty of wildflowers. So it is kind of the best of all worlds - she gets a new walk and we don't have to leave the neighborhood!

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.

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.

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.

Caregivers and their support network

Meagan has a fantastic support network. It's based on purposeful cultivation over the decades. It's stunning to see the breadth and depth of support she has. As a man though, suddenly thrust into a role which removes you from the work environment where you got connections, feedback and support, it's more challenging. At least for this man. Like many executives I had work colleagues and acquaintances. But developing my own social network was never high on the agenda - it was about securing the family, providing, and supporting the development of the boys.

So when you are cut off from whatever interaction you had at work, and then are thrust into the maelstrom of caregiving while trying to understand the disease and take care of the boys - in those quiet moments in can feel pretty overwhelming and stressful. When Meagan is so well cared for by her posse, it can feel uncomfortable to be standing there alone. The boys have been great, stepping up as men and asking about me and what they can do to help. My family has also. Fortunately a few friends have really stepped up and offered the kind of support a male caregiver could use. Like what? Some examples:
1. Texting me and saying is there anything I can do for you today? Need to talk?
2. Asking me if I want to go for a cup of coffee and chat or a walk?
3. Taking me to lunch to just talk.
4. Sending me an email telling me they are thinking of me and inquiring as to what they can do.
5. Asking me if I need a break.

Meaningful gestures. I know they are living their own busy lives and worry they might be intruding at a time that's inappropriate. I've been in that same awkward place where you don't know what to do to help and don't know if calling/texting/emailing would be appreciated. Well, it is, and I now know I should do it for someone else in future.

One of my friends put it most eloquently, and it's worth repeating:
"I am saddened to hear that Meagan's treatment didn't arrest the progression. I kept thinking of you as the day progressed. When can I take you to lunch, for coffee, or a walk and try to lighten your load by an ounce or two?". Powerfully moving and simple.

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.