Everyone’s a medical professional

One of the lessons I learned about being the caretaker for someone with cancer is that everyone fancies themselves a medical professional. Oh, they don’t boast themselves as such. But everyone has an unscientific opinion about the causes of cancer and its cures based on hearsay, popular “science” articles, natureopathy, conspiracy theories, and, yes, even spirituality. It’s frustrating as fuck. Sorry for the language, but as a caregiver, I’ve heard it all and the language is totally appropriate.

First and foremost, there is today a general mistrust of science and the medical community. I don’t understand why — it could be the dumbing down of our nation of the late, or it could be just that people don’t understand science or the scientific method at all. I won’t even wager a guess as to where it comes from. But I’ve heard it all from abstaining from sugar to CBD oil (or even just straight marijuana, cuz yeah, pot is the magical cure for everything, don’t you know).

What is most affronting is the fact that instead of saying something like, “Oh, I’m sorry for this terrible diagnosis you received. I’m at a loss for words,” people immediately start pinging you with articles about special diets, prayer circles, and latest scientific research (the latter of which would in fact be helpful, except you aren’t allowed to just start taking medications that are currently in clinical trials — there is a qualification process to that — and not all medical research is available to you at all times). I know that people are intending well, but as a caregiver, this intrusive passing along of information makes you feel completely inadequate. As if you weren’t doing everything you can already to get your loved one to the best care possible. And believe me, I’ve done everything within my reach to find a cure for Crow (within the range of actual scientific discovery and medical care currently available; I do not try wacky hearsay homeopathic “cures” cuz, sorry, not real science).

The conspiracy theorists are the worst. They fill your head with misgivings about the medical community and your doctors. And even though you know these people are full of bunk, it still sits in the back of your mind as a judgement on your caregiving abilities. Maybe pot is the cure for everything, you think in the dark hours of the night when your mind is over-reacting to everything. What if there is a cure they are holding back?

Of course, that is totally dumb. Crow’s neuro-oncologist at the Cleveland Clinic is probably the kindest, most compassionate doctor on his care team. He’s the only man who handed me a kleenex on the day of Crow’s diagnosis when I couldn’t hold back and he looked pained and almost kind of tip-toed into the room. I will never forget him for that. He always sensed when I needed kleenex every day after. He called me after hours when I had questions and he worked with us to find the best treatment plan for our lifestyle. There is no way in hell that I believe that this man would withhold a cure if he knew of one that exists. He’s on every tumor board, reads research, attends conferences — this man wants to find a cure for glioblastoma, I can feel it in his gestures. You could ask him about anything related to glioblastoma research and he’d give you all the information he had about the effectiveness of that treatment. I think at the end of the day he might have even respected my informed questions. I was really good at biology in high school. I get this stuff on some level. I’m not your average caregiver, going along with the flow.

The biggest piece of non-scientific advice people dispense is in regard to sugar. For some reason, some wacko got it in their head in the past that because tumors feed on blood sugar, that abstaining from sugar will starve the tumor. I point blank asked several doctors on Crow’s care team about this and they said it wasn’t true. I even looked it up on the American Cancer Society’s website and it is in fact listed under the myths about cancer. You will always have sugar in your blood, no matter what you eat, because a lot of food turns into sugar. The tumor will find a way to feed itself. The only link between sugar and cancer is obesity, which in itself is a cancer risk. (I know a million people will want to debate me on this by sending me links to sites that say differently, but whatever, I will check your sources and honestly a lot of stuff on the web is propaganda and not real science.)

I think the real kicker is the way people talk authoritatively on the subject, as if they really know. They will tell you to give your loved one [insert magical cure] as if it is the only thing that will save them. And, of course, that the medical community is hiding something so that BigPharma profits. Whatever. I’ve heard it all and I’m sorry but I think it’s all wrong. I don’t believe in conspiracy theories — too many people would have to know and, as they say, two can keep a secret so long as one of them is dead. But thanks.

Prayer. Another popular cure. Because somewhere in here the magic of deity can rescue you if all else fails. First, I don’t believe a god, at least not the kind of god described in any text in any earthly religion I’ve encountered. The god of those texts always has some sort of agenda, most of which benefits only those who follow him/her. No thanks, again. Second, if there was a god, and he/she did have the ability to randomly honor some with a cure, it seems to presuppose that said god gave the illness to a person in the first place. Who would do that? I suppose if you believe in good and evil, maybe evil causes disease. I don’t know. This is too much theology for me. So I also find theology a bit offensive, especially because people use this time —  now that someone has a terminal illness — to first assume that you believe as they do, without asking, and then they thrust their faith upon you. And if you say, “Thanks, not a believer, but the thought is nice,” people often want to debate the subject with you. It really puts a person like me in an awkward position.

I’ve been approached about religious subjects from people with whom I did not even formerly have a relationship that included a topic of religion. And they felt like it was fair game to bring up these topics. I assume people think they are being a help, but again, it’s like when the Jehovah’s Witnesses knock on your door and demand to talk — you just want to get them off your porch as fast as possible. Because no one wants to discuss religion, no one, except maybe your church friends, so please, please stop. Crow’s faith has always been very casual, and he frankly never liked talking about religion, even though he said he was Lutheran, so it was awkward for him too.

Cancer becomes a community spectacle, it seems. And I’ve not at all liked this part of the disease.



Well, it’s been a long time.

I know, I know. There are no excuses for what is apparently the longest I’ve ever gone without posting to my blog.

But I’m going to try excuses anyway.

Let’s just say that I’ve bitten off far more than I can chew lately. I guess it wasn’t complicated enough that I was planning a wedding and making numerous changes to the new old house that Crow and I bought. No, I had to take it a level higher. I applied for and accepted a new job. True, the environment at that other job was so miserable that it was literally painful to walk into that place every day. And then I got passed over for a raise at time when I felt the most financially drained. I could have stayed there and accepted the comfort of complacency… But no, I had to go looking elsewhere.

Don’t get me wrong. The environment at the new job is 100% better. And the work a bit more challenging as I’m the only technical writer and I’m tasked to create something out of nothing for a software product that is long past needing some comprehensive documentation. Both of these are good. The benefits are better, the pay is better. Good, good, good.

But why now? I ask myself every day. I could have gotten by at the other job, miserable, but using half my brain to focus on the wedding and the house. Oh, but, I’m a restless one indeed!

And then there’s my personal writing. I was going a long so well on my goals, motivated and inspired. I had joined a writing group and I felt even more compelled and inspired to write. So I was trying to squeeze writing in between everything else I was doing. I’ve got two open novels that are begging for me to work on them.

I turned in to my writing group a rough draft of something I’d been working on. It got devoured whole and regurgitated in a lump at my feet. Or at least that is how it seemed to me. I cried the whole way home in frustration. I’m not entirely sure I was just crying about the review, though. It was probably part stress. I broke down because, I don’t know, some part of me pridefully believes I’m instantly brilliant without a lot of work. Stupid, right? It’s been a long time since I’ve done any serious fiction writing that I’ve let anyone read and I think it showed in the piece I submitted. I was ashamed of myself because somewhere along the line I lost the fire I had when I was younger. Not that I was instantly brilliant then either. I just had a lot more confidence about myself and I could take criticism easier. I’ve gotten brittle and faint at heart in my elder years. Lack of exposure, I guess.

That was in March, the day before my birthday (NEVER submit your art for review the day before you’re birthday). It launched me into a depression that I’m still not sure has completely lifted. Well, for the first time since November (and NaNoWriMo), I haven’t touched either of my novels. I’ve gone into the file and looked at them, messed around a bit, and then just lost interest. All the fun is gone. From just a few words from people trying to help me with my art.

I think my frustration stems from the fact that somewhere within me I believe that my writing is my last chance to having a career I actually enjoy. Which is completely and utterly stupid. Unless you’re one of the lucky ones, the chances of making actual money solely from being a novelist is mighty slim. It’d probably more likely that I’d win the lottery. It’s definitely not a career possibility. It’s just a fun hobby that I have to figure out how to do on the side.

At this point in my life, I know that the best I’ll probably ever achieve is to self-publish something. (And I would do it right by hiring an actual editor.) Again, hobbyist. Not a career. I know I’m not instantly brilliant or even brilliant. Period.

It’s like this blog. I write it really for myself but I know that I don’t have many real readers. I have a few trolls who spy (and I suspect are people who know me in real life and enjoy trying to hurt me). A few friends who read with passing interest. My mom. I guess I haven’t felt compelled to update this blog for those same reasons….

Anyway, my point is, the problem with believing that my writing is my last chance to career happiness is that when I hit a road bump–such as criticism, no matter how constructive–it becomes a real obstacle. It’s the deflation I need, though, to come back down off of cloud 9 and back to reality. It’s the reality that made me cry. The reality that I faced a long time ago and I’ve faced over and over and over again.

I think I can go back to the writer’s group once things calm down over here. Maybe after the wedding and the honeymoon. When I’m ready to focus on my writing, and I’ve accepted the reality that I’m just doing this for fun, I will be able to face the group again. I’ll go back humbled. I’ll listen intently. I’ll be a little less arrogant about my abilities.

Crow pointed out, though, that it was a huge step at all for me to show my writing to anyone, which is something I haven’t done (other than my memoir piece about losing Mike, which has to be the best thing I’ve ever written) since college. So it’s progress.

What else has gone on in the past four months?

We have finally put some sort of covering (blinds, curtains) over every window in the house. At last. After a year.

I planted a red bud tree in my yard. They are such beautiful trees and not only did I get to enjoy its flowering beauty this past spring, but I’m now watching its pretty red heart-shaped leaves quiver in the breeze.

Together with my mom, we tore out some ugly bushes in front of the house, removed some pachysandra in the entryway of the house, and replanted a flowerbed in the entry way that also wraps around half the house! We planted a bunch of hostas, some day lilies… The purple salvia Crow’s aunt gave me last year miraculously survived the winter. Two of the three plants are now blooming happily in the front flowerbed. Crow bought me some coleus and begonias and I put those in the shadier areas.

Crow built a huge 9 foot fence around what is to be our vegetable garden. We planted six fruit trees there (2 plum, 2 cherry, 2 peach) this past weekend. I planted tomatoes, peppers, hot peppers, and some basil. We still have some other veggies to plant–lettuce, spinach, corn, squash. I admit that the garden was a little over ambitious… But… why not?

I competed in Calvin’s Challenge with a migraine headache and the left-overs of a flu. I felt awful the first 70 or so miles of that ride. I couldn’t eat because I felt nauseous. I almost SAG’ed out in the middle of the second 50 mile loop. But after laying down at the rest stop for a bit, and sucking down one of those awful goo gel pack things (which was strangely inoffensive in my state), I found a second wind (called a tailwind) and I completed the entire 12 hour race with 122 miles. Not as grand as 2011’s 154 miles, but still a notable effort considering how sick I felt for the greater part of that ride. And I won a silver medal!! There were only two women in my age group.

(Somehow the words of my friend Joanna keep coming to mind, “Heidi, if you used half the effort you do in cycling with your writing, you’d be a star.” Ha. Probably true. Where’s the stubborn tenacity I have while riding when I’m writing?)

I commuted to work by bike once thus far.

I sold my Stow house at the beginning of May! No more paying 1.5 mortgages! No more payments to utilities I wasn’t using. I was a little sad to let go of the house, though, after all the work and money I’d put into it. I’d transformed it nearly into something that was my own. The kitchen–the one big room I never got to remodeling–was just a sad reminder of the dreams I had for it. I hope the new people do something fabulous with it. I like where I’m living better now… But I believe I was actually attached to the Stow house.

It’s been a journey these last several months. A bit of change. Some adjustment.

I’ve noticed I’ve started falling into new patterns. Older ones left over from perhaps my life with Mike are falling away. It’s a lot less painful than I thought it would be.

People are wrong when they say that a relationship doesn’t change you. Or that it shouldn’t change you. The fact of the matter is, when two people come together, they become an entirely different being at some point. A new person exposes you to new experiences. You find new interests together. You get into new habits together. You change some of your old habits to accommodate the other person. And vise versa, if it works. It has to go both ways to work. There’s an adjustment period… But then one day you catch yourself enjoying gardening, picking up new catch phrases from the other person, making references on you and he understand. Sometimes you even catch yourself doing the laundry differently (I used to wash everything in cold!). It’s weird. But exhilarating.

Slowly, bit by bit, the wedding details are falling into place. I’m looking forward to my special day with Crow… and especially for the three weeks following where we will do what we do best together: explore the natural world. I’ve not had more than an extra day off of work since last summer and even that was a working (on the house) vacation. I really need some time away. I feel so tired and exhausted.

I hope that when I return, I’ll feel fresh again about writing. I still want to do NaNoWriMo (though I’m not sure what I’ll write). I still want to take some bass lessons (it’s out of the question at the moment, I’m not going to throw myself even more off balance). I’ll do what I need to do to get back on track. And I’ll try to update this blog. For what that’s worth.