cancer


Well, here it is. The end of one glorious year and the start of another. Since lists seem to be the “in” thing these days, I’ve compiled a fun list of events (focused on perks) of 2012 and what I’m planning resolutions-wise and event-wise in 2013.

2012

  • Steampunk-themed contra dance party with fantastic costumes, goggles c/o la boyfriend (now of nearly 2 years)
  • Vacation to Seattle to visit cousins and play tourist
  • Finding out Dad had prostate cancer, supporting him from far away, and then having an “Adios, Cancer!” party when we found out he was cancer-free (44 radiation treatments later)
  • Incredible women’s climbing weekend in West Virginia
  • Interesting, if amusing, debates followed by re-election of President Obama (phew!)
  • Friends-filled college “reunion” going-away party
  • Vacation and travel through Peru, catching 15K heights and Machu Picchu
  • Maryland Renaissance Festival and dress-up
  • Started second novel
  • Joined/helped form an independent author’s collective/publishing imprint
  • Sent over 30 letters to Sandy Hook Elementary School
  • Spent first holiday with boyfriend’s family

2013

Resolutions:

  • Eat breakfast every morning
  • Spend 1 hour before work writing and/or editing
  • Meditate twice a day
  • Still arrive at work at sane hour
  • Make more home-cooked meals (cheaper and healthier!)

Events to Look Forward To:

  • Time-travel-themed contra dance party with boyfriend (yay more dress-up)
  • Parents visiting DC
  • Seeing more old college friends
  • First time going to Las Vegas (conference)
  • Seattle visit with cousins
  • Saturday classes for project management
  • possible Hunger Games food/watching event
  • I turn 25 (woo rental cars!)
  • Attending brother’s wedding in Hawai’i as bridesmaid
  • <Possibilities!>
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Saturday night, we had Dad’s “Adios, Cancer!” party. It was awesome. I don’t think my dad’s had as much fun in years. At the end of the night, and into the days after, he couldn’t stop talking about it, or replaying the video of us dancing over and over. It was fantastic. AND it’s official: no cancer at all in his body! Not even his brain (brief scare there).

It felt like half the town was at the party (this may or may not actually be true) to cheer him on and support him. adios cancer button with date and "(Check those PSA's!)"We rented a renovated church-turned-event-center, and had buttons like the one here at every table. A stage hosted the band, Gumbo Loco, who eased us into the evening of scrumptious pizza, cannolis and other yummy desserts, a constant supply of M&Ms, and a wine/beer selection. The pizza, cooked as we ate in a woman’s mobile stone pizza oven outside, was incredible. The crowd favorite was the cheddar, thin apple slices, and sausage one. I think it had some maple on it and might as well have been pizza-for-dessert.

After dinner, a contra dance caller and I talked about getting the crowd dancing, and we started the dancing session. My dad did a great job! He’s never really contra danced, and it can be a workout. He’s still on meds and gets tired easily but he held his own for every dance. I was next my my 3-year-old niece for many of them, and she just giggled and bounced the whole time. Precious.

I let my mom and dad have the last dance (and waltz), since they, as a couple, have faced it much more than I. Cute 🙂

All in all an amazing evening and an amazing reason to celebrate!

I know, I’ve totally been neglecting this thing. Life’s gotten in the way, mostly in good ways.

 

Guess what? Tomorrow is my dad’s LAST day of radiation! Done! That’s it!!

Happy dance 🙂

This is a radiation therapy machine. Pretty funky looking, right? I went with my dad this week to see what happens when he has radiation sessions. While he changed, one of the nurses took me into the room and explained what they were going to do. It’s kind of nifty, actually, and she took care to treat me as a daughter but not a 5-year-old. I chose this picture so you can see what I did – the whole thing rotates. It’s huge! And rotates. So actually, a lot of the machine is behind this.

Basically, my dad lies on a table (which they can also move 360 degrees, or close) and then they turn him and the table so that little tattoos are lined up with laserbeams coming from the walls and ceiling. When they created his care plan, they put tattoos on him so that the radiation would only go where it was needed. You don’t want that stuff going all over your body.

They let him bring a CD or iPod, and blast Beatles songs through his room (and the nurse’s station – which for radiation mildly resembles a cockpit). When my dad first spoke of his radiation, he mentioned it feeling as though he were in a planetarium. Now I see why. The radiation machine moves, he moves…it must be strange, disconcerting. He brings them M&Ms. He brought popcorn once, telling the nurses he’d put some kernels in his stomach to see if they popped. Always the comedian.

It’s a big room, as hospitals go. There is even a slight entryway before you turn the corner and see the layout of all the equipment and monitoring systems. As I left the room with the nurses, I thought maybe it was an extra precaution against the radiation. But what do I know. Maybe it’s just a nice privacy thing for patients. Regardless, a huge door slowly closed, and intermittently a sign above it would light up: “Radiation In Use.”

There were 2 monitors that showed my dad, and 3 others for the radiation, monitoring, and treatment itself. I didn’t watch this. I saw the setup and was content to sit in the little extra waiting area in front of the door.

After he changed back into his clothes, we went to a cafe so he could sit down and drink some water, get a snack. Incredible what just 15-20 minutes of radiation can do to the body. He’s on the last leg, though, which is good. Nearly done.

But the last is always the hardest. I was trying the somewhat chaotic work-from-home-and-bus-and-airport-and-plane, trying to figure out if I needed to be on a conference call or not…you know. Fun post-vacation agreements. My dad called me from downstairs. He had a hard time saying it: “I don’t think I can drive myself to radiation today.” He was so tired. Is so tired. And was just feeling awful. I called my mom; we knew there had been a chance of it, and it was fine, but she could not get out of her meeting. I raced around the house, throwing my things into my duffel bag and brushing my teeth so I’d be ready to catch my bus, and so I wouldn’t smell, respectively. I drove. We got there. There was no parking. He went off to his appointment and I drove around the parking lot like an idiot for awhile. There is a garage but it’s down the road and it would take too long. If his appointment was on time and as short as it had been the day before, I might be able to make it home in time.

As it was…no space opened up, Mom called, and after several back-and-forths, and voicemails on Dad’s phone, we agreed I should leave and meet her at home to grab my stuff.

Now, I know my dad doesn’t feel this way, but at the time…worst daughter ever, abandoning your dad at the hospital like that.

I reluctantly drove out of the hospital, grabbed my duffel bag and some snacks/breakfast/tea for the road, and my mom drove me to the bus. After, she picked him up. Turns out he did not have his phone on him, so even after his session had ended he would have no way of knowing. Presumably both got home with minimal freak-out, but I admit I’ve been too embarrassed to ask.

It will all be done soon. My dad would probably feel better if he watched his sugar more, but he’s in single digits for sessions left. He still ostensibly buys treats for me when I’m home, but is the only one to eat them.

My spastic work-from-wherever day was frustrating at best, and I didn’t get what I needed nearly on time, which led to backups the following day. My boyfriend picked me up from the airport and we grabbed dinner with his family. I checked work email. I was….well, just not in a good place. But my boyfriend, as ever, handled it, and we went to a late showing of Snow White and the Huntsman. Yes, lack of sleep followed. Yes, I was exhausted. But, mentally, I was good. We got everything done, on time, to the best of my ability, in the time given.

And…

Tomorrow is Friday!!!

My dad is ready, organizing people, places, things – all for the wonderful August “Farewell to Cancer Party.” If you’ve been following for awhile, you may recall that almost as soon as I started this blog, I wrote about how weird it feels to bring someone you love to a hospital cancer center:

After a swing by a coffee shop, we headed back the way we came. Outside the doors, the ones below the big white sign: Cancer Center. Someday, this year maybe, it will be the last time he has to walk through them. He will be walking. And on his way outside. No more meds. No more treatments. Cancer-free.

And we will buy him scotch and throw a party.

OK.

And now it’s happening, calendars are getting marked. I’m beyond excited. This week has been completely up and down, with more awake midnights than I wanted, but everything is turning up. I’m catching a baseball game tonight, I’m going home this weekend. It reminds me of a song off the new Carrie Underwood album “Blown Away” (oh, is it not new? It’s just that it’s been on repeat on my iPod ever since I bought it).

Thank God for hometowns
And all the love that makes you go round
Thank God for the county lines that welcome you back in
When you were dying to get out
Thank God for Church pews
And all the faces that won’t forget you
Cause when you’re lost in this crazy world
You got somewhere to go and get found
Thank God for hometowns

To boot, I’m seeing some of our neighbors, speaking of “faces who won’t forget you.”

13 radiation sessions left. A party. Everyone’s going to be there. Reserving the location, planning caterers (and scotch for my dad, of course), getting ready to say farewell to cancer.

I’m so ready.

This is a shout-out post. Thanks for all the support: family, friends, strangers. It really means a lot. Some may think it goes unnoticed but I assure you it does not. Thanks to my brothers for talking about everything from Dad and family stuff to the latest computer games. Thanks to my mom who is home taking care of everyone but herself. Thanks to my cousins, who have been through this to a degree and offer love and hugs from around the country. Thanks to my boyfriend for putting up with me and my sometimes immobile self, for skipping our dancing ritual just because I can’t go (even though you don’t need to bring a partner and he could go himself), for getting me roses and chocolate and strawberries for my birthday. To my friends who exemplify the “friend in need is a friend indeed” idea, for taking midnight phone calls. To my coworkers who listen to me and nod and keep my spirits up. To my boss for concern and email checkups to see how I am doing, how my dad is doing. To the random followers I’ve accumulated through WordPress and Twitter.

Sometimes, it can be easy to forget. You’re so wrapped up in your own world, and it can get dark and lonely there. You want to talk to everyone as much as you want to shut everyone off. But there is a lot of love in this world, despite daily news headlines. Thanks for the support, even if I can’t always acknowledge or understand it right away. It’s the little things. It always is. So thanks.

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.

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