The Red Accordion Diaries

Cheerful post today!! Ha ha.

Can I take a minute to stop and suggest that you talk to your parents about getting their affairs in order, so to speak? It’s not a pleasant conversation, but it’s a lot easier if there’s no terrible diagnosis. You’ll just feel like someone who is doing their homework before it’s due, and, let me tell you, that is a good feeling.

I like to have my life organized (I still also like to jet off to Paris at the last-minute though, which is a lot easier to do if your life is organized), so my parents and I visited with an elder law attorney back in the summer of 2016 to set up new wills and create a trust so the family house would not be lost. Mom was convinced she was going to die before my dad (she was right), and that he would live another 20 years, “marry some floozy who would get the house” (she was wrong).

We did not end up setting up a trust for my dad because two stage 4 cancer diagnoses soon followed our initial meeting. Still, that meeting forced my parents to write down everything I needed to know about all in one spot — the mortgage, the auto titles, the insurance information, social security, etc. We were able to ensure that there were beneficiaries listed on bank accounts and Power of Attorney was solidly in place when my parents were unable to leave the house.

Anyway, might I recommend the kind folks at Kentucky ElderLaw if you have elderlaw needs (if you’re in Kentucky, that is). Also in Louisville is the fabulous Nicole Willet-Jones who specializes in estate planning.

In the mean time, here’s a quick list of things you could do to make end-of-life a lot easier on your next-of-kin:

Make a will (duh) ... with an attorney
Appoint/create official Power of Attorney to your partner or adult child you trust, and file these forms with the banks you use, insurance agents, even utility companies.
Power of Attorney expires with death, so I found it useful for my dad to list me as beneficiary on his bank accounts (some refer to this as “payable on death” or “transfer on death”). He didn’t have a lot of money leftover, but if he had this would have been a really useful thing to avoid probate (my situation was also WAY easier because I’m an only child)
Ask about various options to protect any property you own (the laws get tricky here and vary state to state)
Make a list of all your bank accounts, stocks, or any other property, so people know how to pay for your funeral or your water bill
Have a conversation about health wishes and funerals (sounds tragic, but my parents and I had a delightful lunch at Chuy’s where we planned their funerals while munching on chips and dip). Neither of my parents wanted a service, and, while I would have guessed that they wouldn’t have wanted one, it was nice to hear it from their own mouths.

I'm trying to exhale fully, but I'm still not quite able to do that. For those who are concerned, I'm off the benzos, and mostly feeling ok. I'm still irritable and impatient and will likely always struggle with depression, but an odd sense of freedom is settling in.

I'm trying hard to let go of any feelings of guilt because I'm pretty sure I've seen enough tweets about therapy to know that everything you feel is normal; there is no right or wrong way to grieve; etc etc. Sadness is a given, but what I did not expect to feel was liberation.

I knew I'd feel relief when they died; their particular cancers were extraordinarily painful and difficult to watch. It had been a long few years of never wanting to leave their sides, but also of not being able to plan anything.

I turned down a Broadway role in a national touring company because that six-month tour was during my mom's "six months to live" prognosis. I guess it turns out I could have taken the role and Mom would have lived another year (though would she have? Maybe it was me being here and advocating for her so fiercely that helped her live longer). Anyway, there were lots of postponements and fly-by-the-seat "plans" that we just had to deal with because nothing was predictable. We had to stay close.

Suddenly, there is nothing holding me back.

Not long after my dad's funeral, the boys and I piled in a rented minivan and took a last-minute trip to Harry Potter World. I turned off my phone for a week because all of my family was with me. For the first time ever, I was not dreading a phone call.

Now for the even bigger sense of freedom, and writers out there, this might be particular to you (or maybe not?), but imagine what you could write if you knew your parents would never read it.

It's funny how the knowledge that my parents read my tweets would censor my language. (I know, you're probably thinking, "She's been holding back?!?" but yes, I have.) It never affected my songwriting, which I think is funny, but my prose, essays, blogs, etc ... I just never wanted them to worry or take on any more than they needed to. I don't have anything particular to shout from the rooftops now that they are gone, but I am looking forward to writing without consequence.

Though I suppose I should think about my children reading this someday ... maybe I'm not as free as I thought :)

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However public it truly is, this blog feels safe. Things I would never post in a Facebook status or tweet feel more discreet in a blog. Facebook tends to devolve into a discussion that has little to do with the original intent of the post (generally to the point where I want to just delete the post and maybe even delete my entire account because YES, OF COURSE I HAVE GOOGLED IT ALREADY or whatever the obvious answer/suggestion/recommendation/solution is). Twitter can be so easily misinterpreted because it’s so out of context. Like when someone last week retweeted me with a “thoughts and prayers to you in your first world problem” kind of situation, when this person had no idea that I own the domain webothhavecancer.com. Out of context, my tweet looked like a vapid whinge, and while, my life is definitely significantly better than a majority of the world, things aren’t roses right now.

Though I can’t afford proper therapy, I’ve learned enough from my friends who can afford it — that my feelings are still my feelings, no matter how much I acknowledge that life could always be worse. Of course if can be worse. It could be worse for all but one person on the planet — for that one person who, at this exact moment, truly does have it the worst. But outside of that, I’m trying to accept that a lot of things suck for me right now. My family, while full of love, has had to deal with a lot of trauma, drama and heartache, with horrible timing and unfair swings of emotion.

I’m holding my shit together because I have no choice. When David comes home on the weekends, I usually lose it because I can. I hold it together during the week for my kids. I have no time for self-care. Please don’t tell me to make time because right now I’m in survival mode and self-care is NOT at the top of the list. The idea of adding one more thing to my To Do list right now — finding time for a yoga class or a walk around the block — adds exponential stress, particularly when I fail to cross off that one more thing. If you’re itching to comment that I should put on my own oxygen mask before helping others, please refrain. Think it, but understand that right now that’s just not possible. Survival mode.

I’m pretty frustrated with the medical and health care system. My dad’s had an invasive recurrence, and I am not happy with the attention (or lack of attention) and communication that he’s received. I’ve advocated for him deeply. Phone calls aren’t returned. Surgeries aren’t scheduled. Doctors have made incorrect assumptions about my dad’s choices. People are giving us different information. I can’t tell if the surgeon wants to operate because he honestly thinks he can cure my dad or because my dad happens to be an interesting case.

My dad is as stoic as ever, though he’s trapped in a situation and a location that he has no control over and I just feel awful for him. The poor man lost his wife and best friend of almost fifty years. He spent the last two months of her life in extreme pain from his own radiation and chemotherapy. I want to just hug him tightly 24 hours a day, but he feels like he’s a burden on us. He’s not. This is family, and I love him. He raised me to love and help and be there for family, and it’s a no-brainer that I want to take care of him and spend every minute I can with him.

But it’s a crap time. I hate that there’s no home health care (yes, we’ve looked into palliative care, which is not hospice, but it’s been a several week process to get that ball rolling, involving financial forms and phone calls, even when it ends up that you qualify for full financial assistance because, well, you lost your job the same week your wife was diagnosed with pancreatic cancer). I just wish home health care was standard. I wish there was a team of people who had eyes on my dad on a regular basis. I wish people would call us back. I wish it felt like the doctors saw my dad as a whole person, for, like, one minute — that he was more than a 74-year-old widower with cancer living in his daughter’s basement. It feels like they’ve given up on him, but that they forgot to tell him that and want to cut his head off to try to save his neck.

It’s infuriating, and my mind is swirling. I want to be kind to everyone, but I see people with full sets of grandparents and I just get angry. And sometimes I just can’t get out of bed even to do something so simple as to turn off the light because even that feels too overwhelming. And I tweet about it because that’s all I can do — throw a whinge into the universe.

I know. Life could be worse, but it really really sucks for my dad right now. And having just watched my mom endure a really awful death, I want my dad to be able to catch a break for once. He spent the past 3 years caregiving or in treatment, and he could really just use a week at the beach. Or, like, to not be in pain.

Cancer. Let's talk about cancer, and how much it sucks, however everyone we know and love seems to have far too firsthand of a story about it.

I feel like I'm just scratching the surface of maneuvering the hospital system, and I have a surprising number of friends in the medical community. I understand liability, protocol and how different doctors are trained to approach things in a different way, specific to their specialties.

Surgeons want to operate. Oncologists focus on cancer cells, often ignoring other health issues that also threaten to cut life short. There is so much protocol -- and, let's face it, there are SO many people with cancer! -- that doctors tend to forget that there is a person underneath all those bad cells.

In dealing with both my mom AND my dad (in two separate hospital systems), not one doctor or staff member ever mentioned an amazing resource that exists: the Behavioral Oncologist.

It was only in talking with a friend, a friend I ran into at a coffeeshop, whose daughter happens to be a behavioral oncologist (at the same hospital where my mom was) that I even began to understand what that job is.

I had to bring it up myself (children: the advocates!) to my mom's main oncologist, and he agreed that it would be a good idea to see such a doctor. He said he'd arrange for an appointment. His staff didn't follow through. A month later, I asked about it again, and they made an appointment for her four months later. This was for a woman with metastatic pancreatic cancer.

No one brought it up with my dad until I pointed out to a staff member that, well, no one had yet brought it up.

Now that I've ranted about how it's not a service that is readily offered, but seems to be a service that every hospital has, let me explain what they actually do, at least in my own experience.

They listen to you. They understand cancer, but not just how it affects your body. Their focus is how it affects your mind, your relationships, your life, your feelings, your quality of life, and they can help you sort through your feelings about treatments, which then can help you make major decisions -- such as to continue treatment or reach out to hospice to help you enjoy your last years without pain.

My mother was never one to talk about her feelings, so her visits to the behavioral oncologist were quiet. She also was pretty passionate about choosing quantity of days rather than quality of life, but it was really nice to have a doctor who listened to her, who knew the other doctors, and who could help her figure out what questions to ask and how to prioritize her time. There was someone to help her understand timelines and to help her manage her anxiety and depression, not just the symptoms of the cancer itself.

As a family member/caregiver, I qualified to see the Behavioral Oncologist myself as a patient. I still see her, though my mom died months ago. She's been a wonderful resource in navigating this insane health care system and this crazy cancer ride.

Not much more to say here, but I'm trying to write more without violating anyone's privacy. Someone out there -- someone who doesn't have close friends who work behind the scenes and can pull strings -- needs to read about Behavioral Oncologists.

If that's you, then ask your doctor. Ask them straight up if they can put you in touch with the Behavioral team. It's yet another doctor, but it's the doctor/APRN who will listen to you as a whole being, not just as an interesting case.

Who needs me to come speak at your festival/event/work/conference? Here I am throwing myself out there with WMC saying that I have wisdom to impart, and I can do it in a compelling way.

Suddenly, there is nothing holding me back.

Now for the even bigger sense of freedom, and writers out there, this might be particular to you (or maybe not?), but imagine what you could write if you knew your parents would never read it.

Writing is my sanity. I can't not do it. When I am not writing regularly, I am difficult to live with. I am irritable. I am impatient. I make poor choices.

Now this blog shifts from sentimental-my-mom-died-too-young-of-evil-cancer to DIY MOMMY BLOGGER EXTRAORDINAIRE! There’s no chalkboard paint gender reveal, but I do have to find a solution for the hardwood floors.

My task today is: What to do with 100-year-old oak floors that have been peed on by many, many dogs for the last fifty years?

In dealing with both my mom AND my dad (in two separate hospital systems), not one doctor or staff member ever mentioned an amazing resource that exists: the Behavioral Oncologist.

Now that I've ranted about how it's not a service that is readily offered, but seems to be a service that every hospital has, let me explain what they actually do, at least in my own experience.

If that's you, then ask your doctor. Ask them straight up if they can put you in touch with the Behavioral team. It's yet another doctor, but it's the doctor/APRN who will listen to you as a whole being, not just as an interesting case.

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Brigid Kaelin