The Bookend Emotional Life

The thing about being a cabana boy is that you work a split shift when it comes to emotional support. That's not quite true, but fairly close.

The duties of a cabana boy in general are not quite 24x7, but in my case about 18x7. Aside from the emotional support, there is all the logistics support (appointments, pills, managing household, etc.), medical management (learning, interpreting, explaining, counseling), and, in the case of a stroke victim, accompanying her or chauffeuring her everywhere. Then there are those precious hours when I'm awake and she is not when I can do the worrying and thinking - about how to deal with all the future scenarios.

There is one aspect though that is difficult - that split shift emotional support. During the day, when Meagan gets going, she doesn't want to think about the disease. She wants to get done the things she needs to get done and be as functional as she can be. Sure, there are times when the emotions well up and as the cabana boy you need to be there. But they usually aren't deep and usually short duration.

But there are two times when it can get both deep and long. One is in the morning, when she's had time to sleep on it, and wakes with newfound thoughts and wants to discuss them over coffee. But they are of a particular category - more about understanding the disease progression, or balancing seeing friends and the things she wants to get done, or how she needs to prepare herself or think about the disease so she can function. It is an emotional time, but it has a certain quality and is usually linked to some activity, idea, or status.

But bedtime is another story entirely. She has been able to hold check on the deeper emotions throughout the better part of the day. Even though she has engaged in activities or been exposed to information that trigger emotional reactions. So when her head hits the pillow, it's not time to sleep, its time to let loose the pent up emotions. Now as a cabana boy, you've already put in a 17 hour day and are probably pretty exhausted. So when your head hits the pillow, you are thinking sleep. Uh uh. Your most difficult hour is about to begin.

In the early stages of the disease, besides comfort and reassurance, there was always the possibility of providing optimism and hope. About the new research, new drugs, treatments yet to come. At this stage of the disease, when we are pretty much at the end of the rope, and moving from incurable but treatable to incurable and not treatable - there is not much optimism and hope on offer. The best that can be provided is to focus on the quality of the remaining life and focusing each day on that. But that message really doesn't carry the day. So you are left with the comfort part, while she and you, express the emotions associated with the cruel realities of where she is. It is by far the hardest part of being a cabana boy, and comes at the hardest part of the shift.

"Do you still love me?", and other (more difficult) questions...

Meagan has always had a propensity to ask piercing and incisive questions. She reads me like a book, and she reads books well. So my answers need to be damn good, or else I'm in big trouble.

In the past, since the discovery of the brain tumors and the stroke, she has asked tough questions such as, "am I going to make it?". There were periods of time where my answer had to be positive (even though I wasn't sure) because that was what she needed to hear - she needed the hope to keep going because she wasn't mentally ready for the more accurate answer ("probably not"). So it was a sort of kindness on my part to bend the truth, because the goal was to keep her positive and motivated. It wasn't to have a completely open and candid relationship as a couple - because the roles had changed and my job as cabana boy and spouse was to care for her. We also had at that time, some clinical trial options that had some very low percentage of success (success defined as complete remission rather than life extension of some duration). So I could point to those as reasons for my response.

After her seizures and the closing off of the clinical trial options, and the concern by Kaplan over the neurological issues associated with any attempt to use aggressive immune system treatments  - information she was made aware of  - it became more appropriate to lead her into the deeper water and give her the more accurate answer. At that point it was information she was better able to deal with, even though it comes with a measure of grief.

As time has rolled on, and she has experienced the side effects of treatment (the radiation of the brain, anti-seizure medications, chemotherapy), there have been some other questions. Not too long ago it was, "am I losing my mind?". Well, there is no question she is suffering from cognitive deficits. Some are long term and not going to return, like the numbers and dates and time capacity. Others, like her short term memory are more problematic. They have waxed and waned, lately more waxed. It could be the Temodar (chemo) kicking in, it could be delayed onset of the radiation as the healthy brain tissue in the margin area they got dies off, or it could be the medications in general. My response though was swift and sure as it needed to be and as is justified by the facts - "no, you are not losing your mind". I remind her of the brain's ability to rewire itself, remind her of the likely short term nature of the effects, and then remind her of all the aspects of her brain which are unaffected, such as her personality, her ability to have conversation, her capacity for empathy and love, and all the qualities of the mind she has which have endeared her to so many. Her inability to write beautifully is a pain in the ass and frustrates her, but I keep reassuring her it will return in time with practice as her brain re-learns. Of course she is still sharp enough to retort that she hopes it happens before she kicks the bucket (evidence of her capacity to think and warped sense of humor).

Yesterday she hit me between the eyes with two questions, one easy and one hard. The easy one was, "do you still love me". Of course I do, and I told her about the depth and breadth of my love for her and how that was a foundation unshaken by the events. The next question was a doozy. "Do you love me more than just as a wife?". I think what she was getting at here were reassurances she needed over things like appearance and attractiveness and the quality of the relationship that make a scintillating partnership.

She is obviously distraught over a lot of the physical changes. Notwithstanding "Audrey", her smashing new wig, underneath she has lost a lot of hair from the radiation. She's patchy and bald in places, along with the rest of her hair which is a buzz cut. Whether that is permanent or not is unknown.  But women (and men) care about hair loss, and it is a self-perceived measure of her physical attractiveness. She has also put on some weight - some of it steroid driven, some of it because of her need after the stroke to eat high salt and fat foods - to prepare for what we thought would be a next difficult treatment. Her weight for 25 years has been around 103 pounds; she came out of the hospital weighing 93 pounds, and now at 111 pounds she is in treatment fighting condition and hardly overweight. But she notices the differences, has had to buy some new clothes which fit, and is not at all happy about the padding on her face. She has also had a lot of surgeries and has the scars to prove it; appearance altering badges of honor but she does see them. Lastly, as what one of our friend's terms her capacity for "aerobic worrying", she wants to still measure up as a good partner, one who can be interested and interesting, one who gives as much as she gets. And is still viewed as a hot mama by her beloved.

I'm no saint. Our relationship has changed. I am the caregiver and that definitely changes the relationship. It creates an imbalance in the relationship that isn't easily overcome, especially with cognitive deficits. In normal situations that is a temporary condition  - but when you are dealing with a stroke victim, it can be forever. Especially in her case, with the medications she needs and the likelihood that forever isn't that long. And then in responding to the question, it goes back to earlier days, what is the answer she needs to hear and what would be a kindness and reassure her, especially given where she is in terms of emotional swings and fears of impending death and worries about her boys and just making it through each day and week ahead?

In so many ways my love has deepened and I told her that - her ability to cope with this disease with grace and style, her continuing ability to reach out and care for others and express her love, and her desire and ability to create meaning and joy in her life notwithstanding the prognosis. She has exhibited remarkable qualities and those are ones that make me love her more than just as a wife. But I kinda, sorta side-stepped the underlying real question and thankfully she didn't pursue it. I do think I will be spending more time talking about and reminding her of the good times we have had as a couple when we weren't in parenting mode or crisis or caretaker mode. Reminding her about why I have loved her as more than "just a wife". And continue to do so, although internally it's for different reasons.

Just another example of how cancer affects more than just the person with the disease...

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.

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.

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.