Friday, May 31, 2019

When should you take medication before public speaking?

Southern Sirens! I stole this image from their FB page.
They are playing at Highview Park tonight with The Honky
Tonk Band, and I'm emceeing ... it'll be a big time. FREE.
Mental health check: how is everyone doing?

It's a rough week over here, and today I'm trying to figure out how to go out in public and be a cheerful emcee at a delightful neighborhood event tonight. Some of my favorite people and musicians are playing at Highview Park, and it's being recorded for a Kentucky Homefront broadcast. John Gage is out of town, so I'm filling in on hosting duties. I'm hoping it doesn't turn into that scene of Sixteen Candles where the bride takes xanax (or whatever it was) and then trips down the aisle. Because I'm not sure I can handle going out in public and talking to people without medication, but I also should probably be able to think and speak clearly while on-stage.

My dad is hurting a lot. I went straight into caregiving for him four days after my mom's funeral. We have to move in with him ASAP, but don't have any moving crews or boxes or a kitchen at Dad's house because it's all I can do to get Graham to school and make sure Angus has dinner these days.

This too shall pass, etc, though I'm not ready for anything to pass just yet.

Anyway, Louisville, tonight's show in Highview Park features Southern Sirens and The Honky Tonk Band (that's Shannon Lawson!), and I absolutely love both of those bands. It'll be a good time. Now I just have to figure out how to get to Highview.

Wednesday, May 22, 2019

First world whinges and venting tweets sometimes have a reasonable backstory

Fun with DIY projects
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. 

Tuesday, May 14, 2019

Painting Hardwood Floors DIY

Today I walked in my mom’s house. We are moving here soon. It is a wreck.

I am staring at piles of dirty clothes, knowing most donation places don’t do laundry, but I don’t want to hire one of those services because I need to see what’s being thrown away. During this process, I’ve found some sentimental things that a stranger would never have known to be emotionally valuable. Still, I need this stuff gone, so I can ... paint the floors.


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.

Our original plan had been to double the size of the house so four adults with two home offices and two growing boys could live here comfortably. Plans change, and I need to be in this house for the summer for mental health reasons.

Now we are quickly trying to make an accessible suite for my dad, while making the rest of the house inhabitable. I’ve got some bad dust allergies, and this house is a hundred years old. I’m also allergic to dogs, and I’m still finding dog hairs, years after the dogs died.

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?

I’ve googled. I’ve talked to hardware and hardwood flooring folks. I’ve examined every plank of wood, to the point where I developed bronchitis from inhaling so much dust.

These floors cannot be saved. Sanding is not effective, as the stains are all the way through the wood. Even the slightest sanding releases the odor of urines-gone-by (not nearly as bad as cat pee — so at least there’s that). The wood itself is solid, but there’s no subfloor. In an effort to re-use what’s already there, save some resources and time (and money — that is better spent on making accessible rooms for my dad... yes, someday we will lay new hardwood flooring on top of this), we are going to paint the floors and seal them completely.

At first I assumed we’d go dark — brown or black or grey or something, so people wouldn’t necessarily notice at first that we had dared to paint original hardwood flooring. But in my grief, in incorporating the idea that my mom would FLIP OUT if she knew we were painting original hardwood, I’m trying to imagine what she might like. I think if she walked into anyone’s living room and saw something like this, she would love it:

So now my task becomes, not should we paint the floors?, but how crazy should I go? It’s not quite a “what would my mom have done,” because David, after all, is a bit more conservative in his design taste than mom was. Remember the dining room?

This morning a friend is coming over to help me stay focused, to help me put things in large ziploc bags, to help me clear out the room and see the disgustingness that is the beagle pee. What kind of floor will I end up with? Stay tuned! I am back to the blog, folks. For realsies!

Monday, May 13, 2019

How behavioral oncologists are the unknown saviors of cancer patients

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.