Monday, February 28, 2011

Medical Care Costs

This is not really a point of view about the new health care law, or attempts to roll it back. What I can share is how crazy our system is from the point of view about how insurance does or doesn't work. And then the more fundamental point which is about the overall rise in healthcare costs.

Saturday, February 26, 2011

Drama Fatigue

There is something enormously fascinating about the human (well, let's say male) brain. Given the enormous stress we've been under the last several days since the latest news, it's no wonder mine's a bit addled. The typical male response to stress is fight or flight. Clearly a cabana boy cannot do either of those things in this kind of situation.

Friday, February 25, 2011

Reflections, Infections and Inflections

Cancer isn't an infection the way a virus is, although it feels the same. For so many ills and diseases the protocol for cure is well known, even though it can be a hard road. I remain impressed by the women we see each day at the cancer center, getting their blood draws, doctor visits, and then chemotherapy or radiation treatments. Their spirit and determination is admirable. I suspect part of what keeps them going is that they have a pretty good idea that the probability of success is quite high. Yes, they may have to live for 5 years not knowing if the cancer will reoccur. But given the treatments and the continuing medications (Tamoxifen) if you were in Vegas you'd bet on their success at becoming disease free.

Thursday, February 24, 2011

Cabana Boy on Double Duty

I wasn't sure when I started this what I'd write about. I did know that I didn't intend it to be a blow by blow account or daily version of the journey. I guess I hoped it would be more reflective. But this morning, when the snow is fresh on the ground and we are just off our most recent scan news, it seems somewhat appropriate to break pattern and give a "live" update. If you want that, read on .

Wednesday, February 23, 2011

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.

Tuesday, February 22, 2011

Pre-scan meal, oh so not tasty

Scan Day, Again

When you have a chronic disease such as melanoma, scans become part of your life. Hopefully at some point they become less frequent than our monthly ones at the present. Most patients end up getting them quarterly, and then managing aspects of the disease (i.e., tumor removal). The ultimate goal of course is to become disease free, but for melanoma patients currently that is not realistic, you simply want to be NED (no evidence of disease).

Monday, February 21, 2011

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.

Sunday, February 20, 2011


Yervoy is the new trade name for Ipilimumab, the drug Meagan has been on for her melanoma. She's finished with her course of treatment (it was 4 infusions of about 90 minutes each time, over a 9 week period). She got a scan at the start, one at the 12 week mark (tumors grew, bad sign) and has her final 16 week scan this coming week.

Road Trip Lessons

A very nice two day ride back with Casey from Boulder, CO. Thus the absence of posts. We made excellent time thanks to good weather. I did learn the the Best "Western Plus" in Boulder meant, "plus noise". Not what I was expecting. The eastern part of Wyoming is pretty bleak country. I had not realized how industrialized Billing, MT was - it appears to be the coal capital of Montana, where coal=electricity. Of course, we had plenty of time to talk, about this change for him and what he's thinking. The crisis with Megan is obviously the trigger event, but he's also using it as a real opportunity to think through his life and what he wants to be, do, and how he can have an impact. He also doesn't want to have any regrets, and being away from Meagan during her treatment was too difficult. I'm so impressed by his new gravitas and thoughtfulness, but one comment stuck out in my mind particularly.

Thursday, February 17, 2011

On the Road

One of the gifts of being a cancer cabana boy is having the luxury of time to attend to important matters. Having left the security of paid employment (for the insecurity of sole proprietorship and developing four different lines of business), I have also picked up the flexibility of time. Time to take Meagan to oncologist visits and scans. Time to do research and engage in talks and discussions about the disease and the options moving forward.

Tuesday, February 15, 2011

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.

Sunday, February 13, 2011

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?

Saturday, February 12, 2011

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.

Friday, February 11, 2011

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.

Thursday, February 10, 2011

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.


-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.

Wednesday, February 9, 2011

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.

Tuesday, February 8, 2011

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.

Monday, February 7, 2011

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.
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.  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...

Sunday, February 6, 2011

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.  
a husband in support of his wife becoming cancer free

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.

Saturday, February 5, 2011


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.

Friday, February 4, 2011

Marking Milestones and Meaning

I had better explain the photo below in the earlier post.

One of the things the boys and I did last summer was to all get the same tattoo (in different places) that had two elements, our Scottish clan crest (a demi-lion rampant inside a belt, with the motto “pro rege”, “for the king”)and we added a personal motto below, “salus in arduis” which means “a stronghold in difficulty”. How apt, given Meagan’s cancer diagnosis.

Many will tell you it’s a slippery slope when it comes to tattoos, they are like potato chips, you can’t have just one (which is why I’ve given up potato chips). So a confession, at this point I now have five. Why do you think the place I go is called,”Slave to the Needle”? Hey,with a wife with cancer, all the old rules and norms go out the door. One of the tattoos is about the chapter in our lives dealing with cancer. It is of the lavender plant, representing healing, caring, and evoking soothing feelings.  It’s on my left forearm.   

Lavender Tattoo

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?

Thursday, February 3, 2011

Now this is what a cancer fighting fridge looks like! How a husband supports his wife.


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.

Wednesday, February 2, 2011

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.

Tuesday, February 1, 2011

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.