There is nothing certain or steady with cancer. One week seems fine, and the next week – bad reactions to the radiation treatment, plans changed, people taken aback, hurt, angry. All the times people said, “it’s the best cancer to get” come rushing back, teasing at the outskirts of your mind.

You know, it’s interesting. I was just reading about how the United States Preventive Services Task Force put out their final recommendation: against PSA tests. PSA tests are currently the only test we have to detect the presence of prostate cancer. Under “Screening for Prostate Cancer” on their website, the statement seems an innocently simple one:

The USPSTF recommends against PSA-based screening for prostate cancer.

And, I know that they do this based on science and facts. They reviewed 3,000 comments on the draft before coming out with the final recommendation. As almost anything that has a “United States” in front of the organization name these days, conspiracy theories ran rampant on the Internet. Most common was that it was a ploy by insurance companies to pay less, and second to that was that it was an evil Obama plan in which he uses the death panels in Obamacare to rid the nation of people he doesn’t like (sound familiar)? News flash: Obama’s plan is a) being contested in court and not actually implemented anywhere and b) does not have the Nazi-like death panels everyone flipped about.  The USPSTF is actually an independent body, so does not have to answer to the Federal Government. In response to the first idea, Dr. Virginia Moyer issued an editorial addressing concerns and explaining in plain English why they decided what they did.

Some critics of our recommendation have suggested that we based our decision on an urge to cut costs for insurance companies and government programs such as Medicare. Cost is not a consideration in our evaluation of the scientific evidence. Our mission is to improve the health of all Americans by sharing evidence-based recommendations with them and empowering them and the clinicians who serve them to make informed decisions.

Basically, they figure prostate cancer moves so slowly and people get so freaked out about the idea of cancer that they make poor decisions that drastically affect the rest of their life. Nothing to do with cancer is fun, no matter what treatment you get or don’t get.  Dr. Moyer also says

Cancer is a frightening word, but not all cancers are deadly. Prostate cancer is rarely aggressive enough to cause death within the course of a man’s natural lifespan. Three-quarters of men older than 80 and a third of men between ages 40 and 60 have cancer cells in their prostate, and yet men have only a 2.8 percent lifetime risk of dying from the disease. Currently, there is no way to know which men have a cancer that may benefit from treatment.

This is all well and good, but I still think that getting a routine PSA so you have a regular baseline for prostate-specific antigens in the blood is a good thing. That way if they start to increase rapidly, you can make an informed decision about next steps. I do think that part of the problem is that people are so misinformed about their own body and the world of medicine that they don’t question anything. Yes, starting radiation treatment the day after you have an elevated PSA is probably more harmful than beneficial. But knowing it, and going through the motions to determine for sure it’s cancer…doesn’t seem harmful to me. And of course, the stories, the non-science. Reactions from men and their family members: “PSA test saved my life! saved my dad’s life! saved my husband’s life!” In some sense, as I processed the articles and information, I was glad this came out, became news. Because that means people will talk. They will talk about it, to each other, to their doctor, to their families and friends. And that means more pondering, more questioning, and, ultimately, better decisions. Honestly, though, the time and money could be better spent trying to identify and research better tests instead of slamming the public with this recommendation. “Currently, there is no way to know which men have a cancer that may benefit from treatment” – ? For real? So…stop doing PSA tests but we have no better option? (By the by, I don’t want to misinform – they do not particularly comment on having PSA tests after cancer treatment, and in reading between the lines, it seems they’d recommend it). So that fear, that not-knowing – that is what drives people to get treatment. As well they should.

My dad, from my perspective, did everything right. Got several tests, got another opinion, confirmed the cancer, and slowly began treatment. I think he, and his doctors, made the right decision to go ahead with treatment.

Last week, everything was fine. No, not even last week – Monday. I got copied on the email about the car my family rented to get into and around DC while they visited. Talked to my mom Tuesday night about calling me when they landed so I could finish up at work and meet them. And really, that was what was going to be in my next blog post. It was called “Family Is Coming! Apartment Tomato! (or is it tornado?)” and only said:

They arrive tomorrow!

Which is fantastic – at the end of a rough rough week they will be here to hang out with and do everything and nothing with.

But I have to clean, get a few special groceries, remember to wrap my mom’s belated Mother’s Day present, finish extra work so I can take the WHOLE weekend off, work crazy hours, and look semi-presentable and ready to dance (because how could I possibly bring them to DC and not go dancing?) at least a few dances, with my neck being how it is, and, and, and…plan things! And…

Well. What else is family than accepting of messy (almost 24!)-year-olds and their apartments.

Still. Clean like mad!

And now…

I got a call from my brother. “Family’s not great, need to talk to you about it.” I was just leaving the office and about to go through the tunnel, so I asked to call him back a bit later when I got home. He said, “Yup, that’s fine. Basically, Dad’s not doing so well with the radiation and don’t think he’ll be able to go. One of us <static> will have to stay here with him. But yeah. Call me later.”

I called when I got home, after running through all of the things in my head that could be wrong, those “best cancer to get,” no-big-deal reactions I got when I first started telling people about it. And you know, maybe, at the end of it all, it isn’t a big deal. Maybe they’ve gotten over it simply, easily, and forgotten the fear, stress, and wondering they went through while it was happening. Maybe they didn’t.

After some cell phone technical difficulties, my brother called back. Now, I know my other brother knows some of what is going on as well. We’ll talk more later today. Thing is…

Cancer isn’t my dad’s biggest issue right now. His diabetes is – he began stress eating, feeling bad about himself and his situation (who wouldn’t?) and eating crap. Sugar sugar sugar, and that, combined with the cancer and damage to his body the radiation does, has to do to rid him of cancer completely – that is deadly. But he’s angry. He’s scared. And refuses to admit that the sugar is actually a huge part of the problem. His blood sugar levels have skyrocketed. Now everyone’s upset, he’s eating more chocolate, and apparently wants to prove the doctors wrong. A very dangerous game to play. This is no game. Nothing about this is easy. To my dad – please try to stop. The only thing your whole family wants is your health. That’s it. Love and love and love. We’re full of it, but I don’t know if you can see that. Remember your positive image of cancer. You were so excited it was positive from the get-go, that while going through radiation you already knew you’d beat it. Remember. You can do this. We can do this.

This weekend, as of this writing, is still up in the air. I have no idea who is coming, who is not coming, if I’m going up there to do what I can….what. And I’ve had my own stressful/scary week – and people keep telling me: you can’t help others unless you yourself are okay. And I’m not. Stress from a doctor appointment Tuesday kicked my neck back into high gear and now it hurts to walk, and swallow, again. That was to make sure I don’t have cancer. It’s one of those slim-chance things: there’s no history of that kind in my family, many people have the same examination, but there is that little chance. That 1% or less that when the results come back in two weeks, I will be thrown yet another tomato. I haven’t cried in a doctor’s office since I was like 7, when a doctor told me, showed me, chided me about how drastically below-average my height was – for being too short. By the time I left this exam on Tuesday, I was so emotionally exhausted I was useless for the rest of the day. I lugged my big bag with a giant binder and notes around DC, catching trains and buses here and there, and did not open it once.

If this is all grief – we’re at the denial stage. I’m scared, myself. If my dad doesn’t kick it in gear and start eating the healthy meals his family is making him, instead of stuff that is high in sugar, things will continue to slide downhill. It will get worse before it gets better, or it won’t get better.

Okay, okay, possible drama queen alert. But right now, it just feels like life is falling apart.

Screw you, cancer. Screw you.

Advertisements