To Help or not...

ANOTHER challenge I face is when to let Meagan go it alone or when to help. Picking the wrong answer generates either the evil eye or increases her risk of injury. This is especially true in unfamiliar environments.

We had a very nice weekend at our place at Decatur. It does have stairs, which caused me more than a little concern at times (they do have handrails from the main floor to the upper story - but there are a couple steps coming down from the kitchen to the family room and those are particularly scary for me when she has a cup of coffee in one hand and a glass of water in the other), but I resisted the urge to help her. The act of helping implies disability, which adds to the other insults she's feeling, continuing the loss of identity and capability. But she did fine at our place, mostly because she is familiar with it. A lot of the worry is around her loss of visual capability, since she has lost her right peripheral vision, and her mind fills in the gap, she isn't always clear about the terrain, nor can she see actual hazards. It also means she doesn't always walk a straight line...a little worrisome when she was walking down the narrow dock. She does fine on even ground.

When we were getting aboard the boat to come home, there are stairs and rises at the hatchways. I was holding her arm (but on the right side and since she couldn't see me wondered if there was some strange man accosting her...) and guiding her toward the hatchway to the main deck sitting room. I said, out loud, "honey, watch your step". After she stepped through, I got the look back and the evil eye. I didn't want her to trip and I wasn't clear at all that her vision would have picked this up - but she clearly had seen it. So saying that out loud announced to the world her deficit potential - and that is not at all a comfortable thing for her. She is sensitive about this, as would we all. So I gulped and made a mental note - ok, she is fine on this boat in the future.

On the drive back to Seattle, we stopped for a quick bite to go as is our custom. She wanted a milkshake (but also couldn't pass up the chipotle turkey burger) and we stopped at the Fidalgo Inn drive in. From the car there was a car curb stop, and a short half stair before one gets to the entrance door. I figured after the boat incident I wouldn't say anything (I am not a glutton for punishment). At entrance ways, I try to get there first (to open the door if necessary) so I can be right behind her and guide her from behind if need be. I did, but as she started walking through the door at a reasonable speed, her attention was straight ahead looking at the menu on the wall. She was about to walk right into the right door jamb had I not caught her shoulder and slowed and maneuvered her to the left. She would have hit that doorway hard on her shoulder. So in that case it was good to intervene, and it was subtle, and she barely noticed the assistance, nor did I get the "good eye" - the "thanks for keeping me from being injured" look.

So it is a process of continually monitoring, being as subtle as I can in helping her, and not drawing attention to her challenges in public.

In Honor of Valentines Day

No, it's not weird to have a wife with cancer on Valentines Day. We ignore the tumors. Having the cancer doesn't diminish in any way the love I feel for her. In many many respects it deepens and strengthens our love. I'm certainly grateful that from an outward perspective this disease has been kind so far, and her capacities are at an even greater level than before the diagnosis - in fact she looks and acts in the pink of health thanks to her awesome diet and exercise.

It Takes a Village

Once you get settled in the cancer routine (not that there is such a thing, it's just that you become a little inured to the cycle of ups and downs and surprises and twists), there is a little time to breathe and make sure you are doing all the right things to become disease free. We simply could not have gotten to where we are without the incredible support network we have.

Training for a Marathon

The Cancer Marathon.  It's not a running race. It's the race to have Meagan become disease free. Initially (after the true diagnosis of Stage 4 melanoma) it felt like a 100 yard dash. There was urgency - to understand, to cope, to make plans, to change directions, and to communicate and support. So every day was a sprint, and the training was to just flat out run as hard as I could. But in doing this, fatigue sets in - emotional, mental and physical. Sleep was hard to come by as I worried and would get up early to do research. But you persevere because you want to prevail. Then, after the whirlpool has sucked you down and you are gasping for air, you realize that it's not going to be a sprint, that it's going to be a long haul. This realization comes about after doctor consultations, evidence of speed of disease progression, and seeing the potential treatments stretching out in front of you (if this one doesn't work, you try another, if that doesn't work, you try another, etc.). So you have to live in the whirlpool, probably for a very long time. So what do you do?

Internet Forums and Their Value

I'm talking disease forums through places like the Melanoma Research Foundation, not those other ones. When you get the diagnosis you are swimming in a sea of uncertainty and confusion. The doctors aren't available 24x7 to answer your questions.  They are especially not available when you are up at 4:00am worrying. There is a place you can go on the internet to read about other people's experiences with the same disease. And learn about treatment protocols and side effects and side effect management. You can learn an awful lot about clinical trials, and what new drugs are in the hopper. You have to be careful about which forums you get on and get involved in to ask questions and offer your own experience - I took some time before I found one where the people seemed pretty sharp and credible. It's helped enormously, I found out about a clinical trial happening in our own backyard that may be applicable and for which Meagan has already had a blood draw to see if she will be a match. But mostly what I've learned from these forums is something else.

The Balance Between Optimism and Realism

There is a very difficult balance between these two things. Each day we "live with hope" as our friend Dennis says. But we are also faced with the "facts" about this disease, while at the same time we see the drug pipeline (hopeful) of melanoma therapies. We approach each segment of time (say in between scans) with this split perspective, that at times, makes it uncomfortable even between us.

What about the nurses?

We are so grateful for our oncologist, Hank Kaplan. He's a perfect match and foil for Megan. Of course he's fallen for her, as most do. Most visits are 2 hug/1-2 high five visits. They have a nice repartee' even when talking about difficult issues and choices. But we are also very grateful for our oncology research nurse, Barry, and all the other nurses at Swedish, including the one who had to give Meagan the 30 second shot in the butt.

Swedish Hospital part 2

A shot of nerve central - the second floor lab at Swedish Hospital, Arnold Cancer Pavilion, where every patient comes to have their blood drawn before seeing their doctor or having treatment.

Swedish Hospital

The main reception area on the 2nd Floor of the Arnold cancer Pavilion at Swedish - where you check in for your doc visit and get your blood draw instructions to take over across the way to the lab. You know you’ve been there too much when the receptionist just hands you your papers when you walk in - already knows your name…

Poignant Moment

Poignant as in profoundly moving.  Not all cancer related things are bad.  Cancer is certainly not a gift, but it has brought us many gifts.  Deeper friendships, expanded and renewed ones, cherished events and memories. The steady stream of funny small gifts, jokes, and cards that Meagan receives to brighten her day. I recall one day when as a family we really did have a poignant moment.

Surreal

-adjective; having the disorienting, hallucinatory quality of a dream; unreal.


That pretty much sums up how I feel about where we are right now. Each day I wake up and think, this just can't be real. First, for Meagan to have any disease, then to have one which is so problematic. The problem for a problem-solving guy is there is no logical, predictable path to a cure. Unlike other diseases such as breast cancer, where after a hard journey through surgery, chemotherapy and radiation the outcomes are predictably quite good for 95% of women, this disease has an uncertain outcome and an unpredictable treatment protocol. Or vice versa.

The Doctor's Office

There are lots of challenging times in dealing with a tough disease. Some are at home, and some are at the various medical facilities. Meaqan has been scanned so many times - from MRI's and high resolution ultrasounds - to CAT and PET scans. No, a PET scan is not to see if she is a good dog owner - our long history with dogs and one cat is verification enough. A PET scan is a Positron Emission scan - they inject you with radioactive sugar and the cancer cells gobble that up at a faster rate than normal cells and the scan let's you see the cancer cells and tumors light up like a Christmas tree. She's also had 4 surgeries to remove tumors and install her port-a-cath, a slick device that lets her get infusions through a special device below skin level hooked up to a main artery. That way treatments don't cause her veins to shrink. It's all the rage in chemotherapy,and proved useful for her Ipilimumab treatments and will for upcoming ones if needed.

Latest developments in melanoma treatment

Here is a link to a good article on the pipeline of activity related to finding a cure/effective treatment for metastatic melanoma.

Melanoma: intense competition

Our goal is to stay ahead of the disease until an effective treatment can be found. The drug Meagan is on (Ipilimumab - soon to be called Yervoy) has had the best results of the drugs in development, but not yet approved. It is gratifying to see so many other drugs in the works - some of which might be workable for her. She does not have the B-RAF protein, so drugs targeting that "flavor" are not for her.

Cancer treatment: a work in process

This article points out the profound challenges in cancer treatment and the difficulty in selecting the right option, even under the recommendation of trusted oncologists, surgeons and radiologists.

NY Times article on breast cancer

Note that in the study it was randomized. Science and cancer treatment needs these kind of controlled studies to determine what works best. But as a cancer patient you're not always interest in a random trial, you want what works, or at least what you are led to believe what works. But so many treatments down the line end up not creating an outcome that is materially different than the status quo.

Waiting for "it" to work

We are in that "odd" period of time between having started a new treatment protocol (based on the results of the last scan results and recommendation of our oncologist) and waiting for the next scan to see if the new treatment has had any effect. Our emotions range from optimism and hope, to concern about what if it doesn't work and what are the next options. The good news is no new surface level tumors.  It's unclear if the existing surface tumors are changing. We clearly don't know what's happening inside. Waiting pretty much sucks.

By Far the Hardest Thing....

The past nine months have been filled with lots of "falling off the cliff" moments.  Sometimes the fall is shorter and the landing not as "impactful".  Certainly the 10:15pm call from the oncologist on a Tuesday night in late August to tell us that Meagan did not have breast cancer but that it was in fact Stage 4 melanoma ranked up there pretty high. Without even getting on the internet, we knew this was much worse news.  When you get news like that it just sucks all the oxygen out of your brain and lungs and you feel stunned.

Cabana Boys are from Mars, their wives are from Venus

Many have read the classic book about relationships - Men are from Mars, Women are from Venus.  I've learned a lot from that one.  We also read one before we got the DIAGNOSIS about attachment - which had as its main point for guys the need to show your own vulnerability once in a while.  Now I'm no psychologist, but after 23 years of marriage and two kids and a lot of work and reading (and counseling and advice from my dear wife), I think I've learned a thing or two. So it's helped when stepping into this whole new situation.

For one, now we hardly ever argue now - hahahaha.  Most of the things we'd get in a snit over now seem pretty trivial in the scheme of things.  And as a true Cabana Boy - you've got to step up and provide the love and emotional support needed - aside from all the administrative matters, such as appointments, prescriptions, care of the wounded after surgery or treatment. So arguing shouldn't be in the DNA of a Cabana Boy.  But problem solving should be.  But if it's 24x7 that's a problem.

One piece of advice, something I've recognized in me, and which I've worked hard to address (with some satisfactory feedback from the main gal), is to recognize when it's time to be in problem solving mode and when it's time to simply hold her or listen (preferably both). There are plenty of times during the cancer treatment journey when you come to forks in the road (treatment options, scan results, alternative approaches, etc.).  Don't pick that fork up and always problem solve! It's good to do.  But you earn a PhD. through knowing the right time to do this and when it's simply better to hold her and be empathetic and supportive. There aren't always answers, or obvious ones.  At times, even if there is an answer, it may not be what she needs just then.  It may be far better to just hold her.

Cancer Fighting Food Places in Seattle

There are a couple places worth mentioning in the effort to get Meagan's immune system into gear.  We've gone pretty much vegetarian, including "juicing" (what a funny verb - if it was aerobic Meagan would be even happier).  Not all meals are eaten in of course.  So when we go out - what are the choices?  Obviously lots of Asian places are vegetarian.  But for pure vegetarian? Cafe' Flora in Madison Valley is a classic, as is Carmalita on Phinney Ridge.  But for easy in, easy out, raw/vegetarian we've discovered two great places:  Chaco Canyon and Thrive.

Chaco Canyon is classic Seattle cafe' style raw/vegan.  http://www.chacocanyoncafe.com/
It's pretty large, and expanding.  It's at the corner of NE 50th and 12th NE in the U-District of Seattle.  Street parking is terrible, I'd park on the street one block east (the one the Safeway is on) and walk over (be sure to buy the parking voucher from the machine and stick on your window - they patrol this area heavily).  Both places function the same way, you look at menus by the counter, place your order, get a number on a stand, find a table, and they bring you the food, then you bus your own table. Chaco Canyon has a lot more tables and lots of people hanging out for meetings or on their laptops.  It's got that relaxed vibe, and since the restaurant is below street level although well lit, you get the sense of being in a little oasis.  It's definitely the more appealing of the two for a lingering lunch.  The food is what you'd expect, fresh, organic, raw and a pretty good variety, including lots of juices.

http://generationthrive.com/cafe/  The other option is Thrive, up at 65th and Roosevelt near the Whole Foods.  It's quite small, 4 tables for two, a communal table for 4-6 and a small counter that seats 4.  They do a fair bit of take out. You are pretty jammed in and the counter is right at the front entrance.  It also has a small retail grocery.  Park either at the Whole Foods lot one block south or one to two blocks east on 65th, where there is no meter. The block they are on is metered. We like their Thai salad, juices, and the fact they list all the ingredients for all their foods and sauces on their menu.

Both have outdoor seating btw. But bring your down jacket or rain jacket...

To Juice or not to Juice, that is the question - cancer and antioxidents

Juicing and your immune system

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 cancer fighting machine. 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 makes it quite tasty. And I thought juicing was only something old hippies did. 

I also have to confess, I am not drinking it.  It's a lot of work, and there is clean up.  I'm eating well, and doing 90% of the food things Meagan is doing to become cancer free.  But drinking vegetables for two people? Way too much to have on hand.  And when we are up at our place in Decatur - it's like hauling the whole produce department from PCC. So this is one thing she gets to do on her own - her own special thing.  

---Nick

a husband in support of his wife becoming cancer free

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?