Connectivity Restored (?)
I have gotten a few emails saying that people were not able to comment.
I believe I have fixed that.
Of course, I thought I fixed it the last time, but I had in fact broken it.
God speed.
I have gotten a few emails saying that people were not able to comment.
I believe I have fixed that.
Of course, I thought I fixed it the last time, but I had in fact broken it.
God speed.
Okay, so it's been a while. And in order to make up for my long absence I will now write a post that will BLOW YOUR MIND.
So, I started school again. I may or may not have previously mentioned (yeah, I could look back in my posts, but "may or may not" is so much quicker) that I hated college before. Like, cried-the-whole-4-hour-drive-back-to-my-house-every-weekend hated school. I'm not sure I can properly convey the level of hatred in print. My miserable experience at school was definitely the Big Thing in my life before, you know, the Big Thing this blog is usually about.
Needless to say, I was never very keen on going back. But here's the thing about college. People who are offering the good jobs are pretty fucking stuck on it. I have a pretty good job, but it so happens that I am pretty smart, a lot smarter than my job really demands. So after a lot of hand wringing and a lot of supportive/forceful/guilt-inducing advice from the main men in my life (dad and husband), I signed up. The agreement was that I would go for one quarter and see if it was okay. And if I never wanted to go back after that, they couldn't say anything.
Of course, I knew I could do one quarter. Let's face it, after you've had shingles you can withstand three months of just about anything. (Which is not to say I wasn't freaked out - just ask my GI.)
The first day, it was a little scary. I have never been to a school with more than 1,000 people, and my school now has, oh, 36,000 or so. I had never even stepped foot onto a public school campus either. It was intimidating. Also I had no fucking clue where I was. No. clue. Seriously, what is up with college campuses? I got there a half hour early and was fifteen minutes late to my first class. Which had been moved.
After that I slowly started to learn my way around. I bought a can of mace and a Vera Bradley backpack. Ah, the college lifestyle. But I felt better. The campus was actually pretty nice, aesthetic- and crime-wise. Other students didn't look at me like a freak like I was afraid of - turns out a lot of people drop out of college and go back later, who knew? I even went so far as getting a sweatshirt with the name of the college on it, which of course is a huge commitment.
On the way home a few weeks ago, I kind of felt like crying again. But in the first time since, um, I don't know, never - it felt like happy tears. I finally got some validation that I had just chosen the wrong school the first time around, I had finally gotten over this Big Thing that had been hanging like a cloud over me for so long.
I am actually happy, a feeling I have not felt for any extended period in years.
For real. Yeah, I just said that. I told you this would blow your mind.
Things, they are a-happening.
In the next 7 days: Two wisdom teeth being taken out, 1 dog spayed, and 2 weddings, one of them 3,000 miles away.
In the next 90 days: Three MORE weddings, two more wisdom teeth, gyn/onc visit, huge project rollout at work, dad begins chemo, and I go back to college.
It's enough to make you miss being sick and unemployed. As I was formulating this poorly-thought-out post in my head, it kept coming back to one thing. Time. When I was sick and laid up it seemed like every day was a month long, every night when I went to sleep it was a relief just to have made it through without dying of cancer or boredom. But now, I can't squeeze a free second out of my days to just relax. Last week, I actually scheduled myself time to daydream (on my lunch break, such a model of efficiency I am) - which may sound weird but as an only child, daydreaming holds special importance to me.
And then thinking about my entire blog, almost every post I've written comes back to the theme of time somehow or another and that's just, well, weird. Isn't it? I didn't set out to do that.
The long and short of it is I don't even have time to write this post. Good news, though, for Limbo fans. I am going on vacation next week to a City where people Sin, so my days will be pretty free to write something worth reading.
My husband came up to me a few days ago, all serious-like.
"I need to ask you something," he said timidly.
"Shoot."
"Well... if I ask you, it will change things."
"What things?" I asked, wondering if this was the moment, which my insecure inner crazy person always knew would come, when he would announce that Ha! I don't really want to be married to you!
"Okay, here it is." Dramatic pause. "What does it mean when it hurts when you go to the bathroom?"
After the initial thought that I kind of wished this was a divorce talk instead, I realized I needed more information. "I assume when you say, 'go to the bathroom,' you don't mean peeing, yes?"
"Yes."
Unfortunately, I still needed more information. I explained to him that since this could be a major health concern, I will engage in this conversation, but could he please play along and not look at me while I asked the following questions? "Okay, does it hurt, like, just on the way out?"
"Yes. But it bleeds too."
I finally understood what very smart people were always saying about the burden of knowledge. And then I turned on the Autopilot, repeating word for word the conversation that anyone who has ever seen a GI has had. "You probably just have hemorrhoids. A few drops of blood at the end or just on the toilet paper is common. I know it might seem scary, but it really doesn't take a lot to make the bowl turn red." Then I veered slightly off the script and added, "Perhaps this has something to do with your fondness for Chipotle."
"So what do I do to fix it?" he asked, conveniently skipping over the oversized-burrito issue.
"I will pick you up some stuff at the drug store. I can't bear to talk about this anymore."
"Well don't you have something I can use? It really hurts."
"No. You can't use my stuff. You can't share stuff like that."
"Why? Sometimes when I run out, I use your deodorant and that's no big deal."
"First of all, ew. And second, deodorant goes on the outside whereas this..." I said, trailing off in the hope that I would never, ever have to finish that sentence.
"No."
"Oh, yes."
"Forget it. I'll live with the pain."
"All right, talk to me in two days."
Two Days Later
"Can you get that stuff for me?" he asked me.
"It's in the closet, I got it yesterday. I marked yours with an 'A'"
I have often said, quite vehemently in fact, that cancer is a random piece of shit with no deeper meaning to be gleaned. But when I sat across from my dad on Sunday while he told me that he was diagnosed with cancer, I reconsidered. Maybe I am meant to help him through this. Or, at least, as a former cancer patient, I have an obligation to help him through this. But what do I say? When he says, "They said it's very treatable," do I tell him that "treatable" is hell on earth? Do I tell him what he is in for, or will that kill his spirit?
(Really. I want your opinion on that question.)
A few days later I realized that lying on the bathroom floor crying wasn't helping my dad much. So I went back into my tried and true Cancer Mode. Emotions Off, Actions On. Like so many times before, I used my pain as fuel for Getting Things Done. I called all my doctors and found nominees for The Best Damn Medical Oncologist Ever. I bought presents. I made comfort food. And I wrote some things down that I hoped would be helpful.
Always Get a Second Opinion
Always. Just, always. A good doctor is never insulted if you get a second opinion. If they discourage you from getting one, then you need it more than ever. Always get a second opinion!!
Know When to Turn Off Your Computer
Information is power. Information has powers, too: the power to cripple you with anxiety, the power to give false hope, and the power to take all hope away. Acceptable internet searches: information on and side effects of medications you are or soon will be taking, networking and personal stories, and new treatments only when it is confirmed that you will need to switch. Ignore any article that contains any of the following: study shows promise for new cancer drug, used for centuries by the Chinese (or "wise men" of any stripe), all natural with no medicine or side effects, miracle, five-year survival rate, or a percent sign anywhere. Limit your focus when researching. If you want to know about immunotherapy options, look for that and only that. Don't get distracted and start clicking on links willy nilly. Once you veer off your original goal, it is nearly impossible to reign yourself back in, and you can spend literally days on end going down a spiral of increasingly irrational information expeditions.
If you find something you are interested in, write it on a list of things to discuss with your doctor at the next appointment. Don't research it any more until then. Ask your doctor a lot of questions so you don't have to hunt for answers yourself. She is the one with intimate knowledge of your exact case, not Google.
Set a Quality of Life Minimum and Enforce It
I wish I had known this one ahead of time. Oh, how I wish I had known. If I could do it over again, I would have set a quality of life minimum for myself at "I am able to get out of bed and take a shower every day." There were many days I wasn't able to get out of bed and take a shower, and I am a very changed person because of that. It is different for each person and may evolve over time, but it is paramount. A life without quality is not a life at all. If a doctor recommends something that would violate your minimum, refuse. It is not worth it. I know this is especially hard in our family, since we have all spent the majority of our lives in hospitals in some capacity, and have great respect for doctors. But they are not in your body, so you have veto power every time. I realized my propensity to blindly follow doctors when I voluntarily let one pump arsenic directly into my bloodstream. Draw the line somewhere.
When in Doubt, Go to the ER
Always err on the side of caution. They're there all night regardless.
Feel Sorry for Yourself
Don't fight the urge. If you want to mope around a few times a week, just do it. And if buying yourself something you don't need seems like it will make you feel a little better, just buy it. Who gives a shit? If someone gives you a hard time, play the cancer card and make them feel bad. Maybe they will buy you something out of guilt. You are owed this much by the universe.
Get Over Yourself
Your pride is going to take a hit sooner or later, get it over with early. Accept help. It will make you and the helper feel good about yourselves. You will not be able to do all the things you used to - but you are the only person who cares. No one will mind if you don't work overtime, or full-time, or at all. They won't be put out if you can't give them a ride or cosign a loan. People are much more understanding than we give them credit for. Allow humanity to show you how wonderful it is. Don't be a stubborn jackass and try to prove to the world that you are still the same, strong super-person. You're not. But everyone loves you just the same.
Get a Healthy Dose of Mumbo Jumbo
Do some kind of alternative treatment. Nothing big, and run it by your doctor first. Personally, I have a tea for everything. Immune System tea. Digestive Health tea. Sleepy tea. Energy tea. Who the hell knows if they work. But it makes me feel like a contributor to my care, not a passive plaything for trainee phlebotomists. And there is something to be said for the placebo effect. If I take my De-Stress tea, I feel less stressed. Maybe it is the desire to feel less stressed, or just the fact that I am sitting still for ten minutes worrying about burning my tongue instead of more pressing issues. Or maybe it works, who knows. Regardless, a routine and a desire to feel better can, many times, help you feel better.
Avoid Chemo at All Costs
If you get a chance to take a targeted therapy, immunotherapy, vaccine, or any normal-tissue-sparing therapy, jump through whatever hoops are necessary to get it.
Did I Mention Always Get a Second Opinion?
Often, my husband looks at me and asks, "Where are you?" My usual response is, "Have you seen Gloria Estefan's hair lately?" which is the punchline to a hilarious Ellen Degeneres schtick about daydreaming.
But really, I don't know where I am. For a long time, I have been in a persistent dreamlike state, usually content to sit and stare. I rarely talk, except when spoken to, and entire days go by that I couldn't tell you anything about. And if I could, it would probably be a pretty boring story. This has probably contributed in large part to my sporadic (putting it lightly) posting on this blog. I write a few paragraphs on something, and quickly lose interest.
I have always blamed chemo brain for my forgetfulness and short attention span, for things like leaving the water run for hours and spacing out on plans. But this is a much deeper, more pervasive issue. Nothing interests me, and nothing really bores me, either.
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That's where I lost focus a month ago and stopped writing a post about not having focus. I have a purse full of notebook pages half full of similar potential discussions. I try so hard to just concentrate, to just finish something, but I always end up realizing that not only do I have no idea of where this train of thought is going, but I also don't have a particular desire to find out.
But the fact is, I can't just drift through life when this is a life I suffered so much to prolong. So I will finish something, even if it sucks. And you will listen, even if it's boring. And with this decree, I shall clear out my purse and dust the monkey off my back by typing up all my scribbles from the past few months.
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"The House That Cancer Built"
A single tooth is ruining my life.
I don't say that lightly. Please recall that I am a person that has experienced nerve pain, bone pain, sharp pain, shooting pain, aching pain, burning pain, cramps, arthritis, shingles, a broken arm, and one incidence of internal hemorrhaging. But a toothache, my god, is there any crueler fate?
I took solace for a brief moment thinking, at least this doesn't have anything to do with cancer, it is just a normal thing that everybody deals with. But. After cancer, does anything really happen independently of cancer ever again? If I didn't have cancer, I wouldn't have had chemo. If I hadn't had chemo, 60% of my teeth wouldn't have rotted out. If my teeth hadn't rotted out, I wouldn't have had to have my back tooth extracted. If I hadn't had my back tooth extracted, a space wouldn't have opened up for my impacted wisdom tooth to move down. And if one of my wisdom teeth wasn't coming in, I wouldn't want to shoot myself in the head just to relieve the pressure.
My dentist wouldn't prescribe anything but alternating Tylenol and Advil every two hours, so I did what anyone in my position would do. I switched to a young, inexperienced dentist and yelled at him until he prescribed me Vicodin. Thank you, cancer, for teaching me how to browbeat green medical professionals.
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Wadsworth Is Sending Me Emails - Or Is It Emerson I'm Thinking Of?
I am sensing a shift in the mood of my spam emails. Instead of the usual penile enhancers and pleas from deposed African leaders, I am now receiving approximately 20-25 emails per day where the subject line is simply two words retrieved from some kind of random generator. At first I deleted them without notice, but now I see that they are almost poetic in their strangeness. Here are some recent highlights:
milliner bagpipes
corsage favorable
rankle disregard
Boy Scout border
coveralls satisfaction
sinister townhouse
chide craftsman
And my favorite...
witch hunt chaperone
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The One Where You Actually Get Some Information Regarding My Life - And Kudos on Reading All the Way to This Point!
In any group of friends, there are two important couples: the first ones to get married, and the second ones to get married. The role of the first ones to get married is to blaze through all life's important milestones at a lightning-fast pace, and then use their First-Ones clout to manipulate or otherwise coerce the Second Ones to follow suit.
My husband and I are the Second Ones. He actually proposed to me after helping the First Ones, hereafter known as the McBabysons, paint their condo. Now, I know my husband loves me, but I'm equally sure that the proposal was a mix of genuine love, paint fumes, exhaustion from forced manual labor, and transparent "Think how much fun we'll have as a foursome" comments.
The McBabysons, shockingly, just had a baby. More accurately, they decided they wanted a baby, announced the pregnancy two weeks later, and then came baby 9.0 uneventful months after that. And really, their daughter is a doll, and I couldn't be happier for them. But I hung back for a while, partly because I knew they were busy and tired and covered in throw up, so they wouldn't be up for company, and partly because I was a little sour at how easily they conceived (There, I admitted it to you, Internet. Even though at my most optimistic, I could only be described as "on the fence" about babies, it was jealousy on principle alone. So sue me.)
Anyway, the time finally came to quit being a baby and go see the McBabysons. I baked their favorite cake, and we headed up to what we both knew would be a full-on propaganda campaign titled, Why You Guys Should Totally Have a Baby. Because, as the first ones, that's their job.
And let me tell you, we were not disappointed. I held the baby for approximately 95% of the visit (I was allowed a potty break... mine, not hers) while I was indoctrinated on How Rewarding Motherhood Is and How Complete a Baby Makes You Feel. Mr. McBabyson also played the man-to-man angle with Husband, describing the joys of huge boobs, rediscovering naps and toys, and throwing young children in the air.
And goddammit if it didn't work. We were brainwashed. I know it worked on my husband because he opened up a savings account and looked vaguely disappointed while leering at my chest. I know it worked on me because I called off work and spent the day in bed crying.
A few days later Mrs. McBabyson called me to apologize "if we put the pressure on too hard." She explained, "I just figured that with everything your body has been through, you might not have much time." Now, before you whip out the fangs and start calling her an evil bitchwhore, bear in mind she was just saying "I want you to have everything in life that you want," in the soul-crushingly brutal way only a good girlfriend or your mother can. Plus, she's right. My gyn-onc has previously told me that due to "poor hormone regulation, trauma, and scar tissue, I would not wait too terribly long if IVF is something you want to pursue," in the infuriatingly vague way only a physician can.
That was a year and a half ago. I don't know what the medical definition of too terribly long is, but I'm guessing it's about half past Move Your Ass.
So.
I made a consultation with a reproductive endocrinologist to see what we might be up against.
A consultation.
I repeat, only a consultation.
The problem is, they didn't have any openings for Move Your Ass, they could only squeeze me in on the 15th of I Could Have Adopted a Kid by Then. So now I wait with the pressure building on all sides and my insides, hoping it is not just the propaganda that is making me hope this works*.
* At some indeterminate point as far into the future as my partially shriveled uterus will allow. Please review comments on this only being a consultation.
When people ask me what my favorite season is, I always say Summer. The hotter the better for me, I tell them. But that's a lie. It's autumn. I love the leaves changing colors, which in my neck of the woods is quite spectacular. I love cinnamon and pumpkin pies and pears. I love that the whole world is cast in a soft rosy-orange glow, and all the holiday sales start at all the stores.
Which is why on one particularly beautiful autumn day, Husband and I decided to take some of our dogs out for a nice walk. As we rounded the corner coming back towards our house, I was overcome by one of those lovely moments where everything that you hold dear is all in your line of sight. I saw my loving husband that works so hard to make me happy, our charming house that we have fixed up with our own hands, our dogs that never allow our lives to be dull, all on our darling tree-lined street in a friendly and safe neighborhood.
And I just thought, wow... my life sucks.
It's strange to think something you didn't know you thought. After all, it's just me up there in that head of mine, so I can't imagine how something popped up that I was so surprised by. So I pushed it to the back of my mind, writing it off as a random irrational thought, like the times I convince myself the milk is bad even though the expiration date printed right on the jug says it won't go bad for another three days.
But that thought just wouldn't be silenced. My life sucks, my life sucks, it kept coming back and back, louder and louder. And then I thought, how silly it is to lie about being miserable and liking the Fall. Why do I categorically deny the things it is so clear I feel? But the lies help me to feel more like myself, at least on the outside. I want to like the Summer. But I am autumn, I am myself a tree without its leaves. And when the biting winds of November feel like they are blowing through me, it makes sense, because I am shot so full of holes that I am more hole than I am person.
I think for that reason it is in the most joyous moments that I feel the most despair. Because when I look at the wonderful things in my life, I see Cancer, and when I think of all the things I have, I can only think of all the things I've lost. My most precious memories are seen only through cancer's lenses. The most heartbreaking of which is when Husband and I went to the mall and looked at cute little puppies, and when I saw the one that melted my heart, I looked up to Husband and didn't even have to ask. We took our new pup to a small field in front of a nondescript building to play that first night. When I walked through that same field two months later to my first radiation treatment, I thought, it all comes back to cancer eventually.
Then the shame sets in for not being able to be grateful for what I have, then the anger that I have to feel the shame. And after heading downward in this constant spiral for nearly three years, I see now that at the bottom is an all-consuming depression. The leaves that were once vibrant oranges and reds are now brown and slimy, and the warm parts of myself have gone barren and cold. Every morning when I wake up my joints are a little stiffer in response to the weather, a daily reminder that the darkest winter of my life has begun.
In response to a large volume of email requesting, nay, demanding pictures of my wedding, I have posted some mildly identifiable snapshots in a photo album. ------->
Enjoy. And quit emailing.
If you've been within 1,000 miles of any city in the last 28 days, you probably know that October is Breast Cancer month. And if you're anything like me, that probably pisses you off.
But the thing is, I don't know why it pisses me off. I really don't have anything against breast cancer survivors, or promoting awareness, these are good things. I mean, there's the most obvious reason that last month was ovarian cancer month and it breezed by with hardly a mention by anybody, except I think Grey's Anatomy, which honestly, is kind of worse than no mention at all (By the way, Grey's Anatomy, effective the beginning of this season you are officially off my tivo list. How's that feel, huh? Does it sting?)
However, I don't think the purely selfish reason of no recognition for my own cancer really answers the question. Chances are, if September was All Things Teal and Payless had Buy One Get One Half Off for ovarian cancer, that would probably bug me too. So why does the sea of pink bother me so much?
I think partly it's the commercialization, the hypocrisy of it. I mean, those ladies who lunch are not going to Macy's because part of the proceeds of Shop for the Cure are going to breast cancer. They are going to Macy's because Macy's is the place to get that $300 dynamite little blazer that no one can live without this fall. And, you know, it will probably look great on them because they have their breasts to fill it out and probably always will, because luck works a lot like money, the more you have the more you get.
(Now, let me clarify a little because it's only the stuff like Shopping for the Cure that gets me. Those commercials by the drug companies that encourage women to explore and research all the possible treatments when they are diagnosed, believe me, I will watch that shit all year long, because that is some actual useful information that might help save somebody's life.)
But the thing that bothers me the most is that it bothers me (we cancer types are a complicated bunch, yes?). It bothers me that no one has invited me to go shopping this month out of fear of my breaking down in a heap in the middle of the mall. It bothers me that Boyfriend went so far as going to Bed Bath & Beyond, claiming it was on his way, to pick up three CHINA SETTINGS for me because he knew the Cook for the Cure display with their pink heart-shaped cake pans would drive me over the edge. The only other time I have gotten that man in a Bed Bath & Beyond is when I told him it was right next to the sporting goods store which was a total lie, and even then I had to buy him a shower radio and park him in one of those semi-erotic massaging chairs to stop the whining (That was when "we" registered for our wedding. Sweet, huh?).
This breast cancer stuff everywhere is like a huge pink neon sign that says, "HEY! DON'T BOTHER RAE RIGHT NOW! SHE IS VERY SENSITIVE ABOUT HAVING HAD CANCER!" It is a physical reminder to everyone around me that I am still fragile and need to be shielded, which REALLY pisses me off, because it is TRUE. The only way I can get through the days is by taking a healthy dose of denial every morning, and these constant reminders of cancer seeping into my life from every direction really fuck that up for me.
Anyway, the short version is that emotionally, I'm not having such a great month. It seems like the more time that passes, the worse my coping skills become. I have actually gone so far as to buy two self-help books to see if someone else has some thoughts that I haven't thought yet. (Side story: I went to get the book "Picking up the Pieces" that Spike recommended, and did you realize that Picking up the Pieces is a kind of common title in the self-help genre? The little bookstore girl thought I was anorexic and took me to the eating disorder aisle. What a great day that was.) So perhaps soon I will have some more encouraging words to share, or at the very least, a book review.
Also, please, get a mammogram.
Boyfriend said that to me on our second date when we went the entire 20-minute trip from the restaurant to his house without saying a single word. It seems appropriate now, though, since I haven't posted in, oh, forever or so. But you will be happy to know that we have finally purchased one (1) computer, (1) bigass monitor, and internet service. Hopefully with these tools I will be able to merge onto the Information Highway a little more frequently.
So. It is true that I am now married. The wedding was wonderful, perfect, and you'll have to take my word on it being beautiful because as much as I would like to post pictures, I would more like to avoid being identified by any Creepy Internet Persons who may be reading this if we ever ended up in a grocery store at the same time. You may now address me as Mrs. Limbo-Boyfriend because yes, I am one of those lame people who hyphenates their name. I would be happy to address any specific questions about said wedding, but I will leave it at that for now out of fear of becoming That Girl That Won't Shut Up about Her Wedding.
Oh, and speaking of things that are wonderful, perfect, and oh-so-beautiful I had the pleasure of meeting our good friend Louise who, hard as it is to believe, is even cooler than my imagination pictured her. She mentions in a post that nearly made me cry that when you're with someone that has been through the same things you have, you can just kind of feel it in the air. Which is true. Consciously or unconsciously, I caught the first bus out of Cancerland in a ridiculously transparent attempt to Move On, but as I stood with Louise it hit me hard that crying after Boyfriend has gone to sleep and listening to Ani DiFranco on my headphones at work are not the same as coping, and I need this.
In medical news, since the wedding I have been dropping pounds faster than the contestants on The Biggest Loser and now tip the scales at an astonishing 85 pounds. My weight has not been this low since I was on chemo, and my doctor is understandably nervous. I have just returned from having about 8 pints of blood taken so she can further delve into Just What the Hell is Going On. Early wild guesses include some kind of Crohn's thing. Will update when I know more, and by more, I mean anything.
And yes, yet more news. I secured a new job at Ginormous Corporation at the end of July. I won't go into exactly what I do, because it is not universally interesting, but I will tell you that I had to shake the dust off my security clearance, and they are currently building a wall around us so foreign nationals can't see what we're doing. My office is two stories underground in an eerily silent basement inhabited by bugs, and I work primarily with two men that are so polar opposite that they could easily be mistaken for a sitcom comedy duo. But things are pretty good so far, I finally am back to using my technical training, and I discovered a delicious thing called Flex Time, which if you don't know, means that as long as it adds up to 40 hours at the end of the week, it doesn't matter how you get there. Which is the Best Thing Ever for someone like me, who has many appointments and sometimes just HAS to sleep in.
Well, I truly hate these recap posts, so I had better get to posting more often. Which is not a binding promise or anything, but I will try.
