Reinforcements...

A spot of good news, our son Riley has returned from two weeks abroad visiting his girlfriend in Berlin.   He had a wonderful time, but we missed him and I'm glad he's back for several reasons.

First, he's a great young man and I enjoy talking with him, especially about architecture, philosophy and cities. Second, he's a great support to me and does a great job checking in and seeing how I am doing. And thirdly, he's a second person in the house who can be with Meagan on a spur of the moment basis if I want to run an errand or go out for a short ride. Having that flexibility and a little more freedom will be a big help.

"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 Change of Scenery

We had a nice weekend at our place at Decatur Island. Good food (including crab!) and friends and a beautiful full moon on Saturday night/Sunday morning. I'm not sure what time it was in the middle of the night when Meagan woke me up to have me look at it. But it sure looked big!

Kind of a bittersweet weekend though. For one, it was quite a contrast with our Seattle home life - with its chaotic nature; two boys moving back in, construction stalled on one remodel of a boy's bedroom and studio, and Meagan's studio not put to rights yet from her move. Plus all the calls, visits, and appointments. At Decatur it's reassuringly the same. It's exactly the way we want and like it and it's not changing. The scenery - with the view of the Sound, islands and Olympics in the background is solid and enduring (as long as I keep the trees under control), and quite beautiful. It is QUIET - especially at night (except when someone on the far side of the island or over at Lopez has a bit too much to drink and fires off their shotgun  - sound really carries). So lots of time for reading and reflection. It represents the core of what we love, and when we leave it and return to the maelstrom, that is a bit hard.

It's also bittersweet because Meagan is aware of what she will miss, eventually. And we have some memorabilia and art which is very dear to us, and it saddens her that it will not be a part of her. I suppose that is the case for all of us someday - but the immediacy of her condition creates a poignancy which makes viewing those things good and sad.

Lastly, she tried to use the time to write in her journal and finish up a special book of quotes for Casey as she did for Riley. She used to have beautiful penmanship and it is enormously frustrating for her that she cannot do it that way now. She makes mistakes and can't keep on the lines, and it doesn't look as pretty as she wants, and if you know Meagan, you know she likes pretty. I tried to reassure her that it will be recognized for what it is - a labor of love and determination in the face of insults which prevent her from her old means of expression - but something which will be cherished more than if it was written in the finest hand ever, because in this case intent and motivation trump the visuals.

The Good, The Bad, and the Ugly

The good is that Meagan is feeling relatively good these days. So good that she has a hard time believing that she really has this horrible disease. Unlike many other cancers, she has not had to endure lengthy, debilitating treatments. Her "events" have been off the meter bad, but did not leave her feeling badly for any significant period of time. Her surgeries have been relatively minor, with localized pain, but requiring no more than ibuprofen. So after 15 months with living with the disease, a disease that can be very debilitating and require super hard treatments, she has not had that bad a quality of life. We hope that continues for some period of time. But I can sense the frustration and disconnect within her. She feels capable of walking, of being productive, even though she has some limitations cognitively and physically (no driving). So it's a bit like being in the eye of a hurricane - some events have passed by with severe consequences, there is this temporary respite (even the chemo she is on seems to have little side effects, not even much fatigue), but I at least know we have the rest of the hurricane to come.

The bad is the difficulty Meagan is having getting into her studio. She moved her studio physically from what is now Casey's bedroom to my old office. But there are lots of boxes of her art supplies and even though she has a space to write and reflect, with a great view of the garden, she wants to get the whole thing set up. Than means going through the boxes (all of which are labeled with their contents) and deciding what to put up, what to hold, and what to get rid of. Some of the "hold" stuff are things she cares a lot about but probably have meaning long term only for her. So it's hard emotionally for her to deal with it. She knows she won't be able to paint or continue her Illumination project, and while sad, has reconciled herself to it and has set what work she has completed aside, to be held and passed down as a family heirloom, after we figure out how to display it properly. But her scrapbooks of old magazine pages, her books on fashion, and textiles and patterns, her collection of beads and fabrics - all of those are things which helped her creative development and which are too hard to pass along. I've encouraged her not to do anything rash, to get rid of logical stuff (i.e., oil paints), but just leave the rest so she can use her space. I think after a burst of activity yesterday and today she will do that - after a weekend at Decatur this coming Sat and Sun, she wants to be able to start using the space Monday, and that will help bracket how much more time she spends on on this emotional process.

The ugly is having to talk about where we are in terms of disease progression and options. Because she forgets, we have to have the same conversation repeatedly (although not frequently). This is a challenge for me and for her. It's frustrating for me, because I get re-traumatized again, and it's frustrating for her as I remind her of what the treatment options are and what clinical trials have been shut down to us (because of her brain tumors, brain bleeding, seizure history, and medication). She has a hard time grasping all this (it's complicated) and so can get a bit testy. She knows it's a matter of life and death, but doesn't quite grasp that our treatment options have been severely limited and her clinical trial options almost completely eliminated. Plus there is the concern by Kaplan that any clinical trial involving Interleukin 2 (which most use in combination with chemotherapy [hard in and of itself] and tumor infiltrating lymphocytes) would be extremely toxic and involve taking her off her medications - so that is a conversation we need to have with him on August 3. Let alone we have to await the results of the brain scan on August 1, because any brain involvement at all makes clinical trials and any systemic treatment moot altogether. I still need to follow-up with one clinical trial place (locally) to find out if they would take her on, if there is no brain involvement. It pisses me off that they have not gotten back to me after a couple long conversations with the clinical trial coordinator several weeks ago who promised to get back to me. I take this as a sign that it is "no" (because most clinical trials are actively trying to recruit patients, so if they don't call you back it seems self evident they don't want you), but Meagan wants a definitive "no". So a little stress.

Then there is the whole issue of appeals and request for compassionate use exceptions with the clinical trial places. Assuming Meagan wanted to, and Kaplan either agreed or didn't stand in the way (and her brain is clear for the time being), does she take the risk (if the clinical trial places agreed) of going off medication and undergoing experimental treatment which might be quite debilitating and trigger strokes or seizures? Especially if the treatments are out of the area. And have quite uncertain outcomes (these are all quite experimental and theoretical) and may not do anything in terms of life extension, but could dramatically affect quality of life?

Difficult, difficult decisions - all in scenario stage because we don't have all the information. The big pieces I suppose are the state of her brain on August 3 and what we think of what Kaplan has to say about going off medications and the potential impact of high or low dose Interleukin on her  - coupled with a discussion of quality of life and probability of success. Ugly...

A Tough Day Emotionally

While there were some very enjoyable times for Meagan yesterday, there were also some considerable lows. The cancer books don't tell you too much about how to deal with these situations so you have to make it up as you go along, trust your instinct and hope like hell your response is helpful.


I used to think the two hardest general questions were:  "what is the meaning of life?";  and, "what is my purpose?".  Tolstoy, in his book The Three Questions, had it like this: When is the best time to do things? Who is the most important one? What is the right thing to do?".


Boy, was I wrong, and so was Tolstoy. I heard the two hardest questions yesterday,


"Is there any hope for me?"


"When can I be your partner again and not your charge?" Typically followed by, "do you still love me?".


Usually questions like these come from left field, so I am not fully prepared intellectually or emotionally to address them. I do think my instincts are pretty good, so my first reaction is to simply hold her, because an immediate answer is not aways required. The questions are clearly asked out of fear and insecurity and sometimes the best answer is to provide the comfort of being there and holding her to assure her she is not alone in this battle.


I hope you all know what my answers are. It's not necessarily the words that are important though, but the conviction and sincerity with which you say them. It's especially challenging when she is fragile due to her medication - no fault of hers at all. The easiest one to answer is the "do you still love me?" question. That requires a quick, certain, sure, forceful response. Along with a reassuring long hug. 


"Is there any hope for me?" is a little tougher - not because of my response ("of course there is hope") but because of the cognitive dissonance within me. If I answered, "I don't know", which is probably more along the lines of what I actually think (given what I know about this disease and it's typical progression and the best drug developed in decades for the disease which didn't work for her, and the metastasis to the brain), it would generate a response which, suffice to say, would not be all that helpful. So sometimes one answers with a response based not on what you might think, but what that person needs to hear - to keep them going, positive, hopeful and able to cope. That's when your role as a caregiver kicks in - to provide emotional support and not necessarily answer the question asked.


The other one is tougher. My response is that this is just a phase and our normal balance will be restored. The job of any partner is to support their significant other in sickness and in health - right? I tend to focus on the technical aspects - the medication schedule and tapering which will improve her cognitive ability, at least to post-stroke condition. And reassure her that notwithstanding the caregiving aspect, she is my partner and does provide me reciprocal benefits. I know she is frustrated at not being able to care for me or do the things that a partner does, and is trying to find ways to do it to the best of her abilities, such as making a list of all the movies we need to see this summer. But the reality of the situation does make it a tough question. It's been a year now since her first diagnosis of malignant cancer and ten months since her diagnosis of metastatic melanoma. And it has been a downhill slide the whole time (physically and cognitively), with no real end in sight. And the situations keep getting more and more severe. It's one thing to take her to a scheduled partial mastectomy, it's quite another to rush her to emergency and have her undergo brain surgery and come out with a loss of function. Our non-emergency days become focused on medication schedule and ensuring she gets them, future medical appointments, discussing scenarios (when is my next treatment and what is it), being her social secretary (although she is slowly trying to take that back), and making sure she is safe and cared for. And that does change the nature of the relationship. And I'm not sure it's really temporary. 


So this is another instance where you put the best interest of the questioner at heart. It's the right thing to do. But it's not the most satisfying answer internally and it raises more questions internally. While the advice I give her pretty consistently about the disease in general is sound (focus on one treatment at a time, live in the moment, enjoy life for what it offers today) - it's not always advice I can practice myself. So in the wee hours, I do spend a lot of time wondering where this all goes.

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.