An Interlude on Keeping One's Sense of Humor

One thing I have on cancer on a consistent basis is that I am a lot more entertaining. At times, I let it get bigger than me, scarier than me, but at no time has it ever been funnier than me.  Some people fight it out of their system.  I have a lot of fight, but think I may also be able to sarcastically harangue it out of my body. 

To this end, I have made it my personal mission to try and make every health care professional that has to deal with me laugh at least once.  Today I went three for four. 

First it was the poor sucker that brought out the water/iodine cocktail  that I had to drink an hour before my CT scan.  I asked him if there were roofies in it.  Later he told me that no one had ever asked him that before.  I told him that it was probably because he was really hot and he didn't need sedatives to bag a chick.  He told me I was his favorite patient this month.  I almost gave him Mo's phone number, but that ultimately felt more like a punishment than a thank you.  (Love you too, girl). 

Second was the IV nurse.  Because I have a specialized port in my chest to ease IV administration, it takes a special nurse to insert my IV.  IV nurses, I've quickly learned, are sort of a dour lot.  It probably comes from spending every hour of every work day having your arrival dreaded by every patient. After she pulled the IV out post-scan and rinsed the port, I sighed and asked her if she had a cigarette.  She laughed in spite of herself.

Third, the CT tech.  We were discussing logistics (since I can't raise my left arm above my head, we had to figure out how to position my arm so it didn't interfere with the chest scan), he mentioned that I was awfully young to have breast cancer.  Without thinking, I muttered, "that's what she said." 

I struck out with the woman who seemed to be coordinating the CT scan circus.  Mostly because she had a sizable mole on her chin and I was afraid if I opened my mouth I was going to pull an Austin Powers and starting screaming "MOLEY MOLEY MOLEY MOLEY." Made a good decision and just let that one go.

 

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There are certain things that no book or pamphlet warned me about when I started this odyssey.  One of these things is something that I've already bitched about numerous times:  the swamp pit.   When one undergoes a lumpectomy, this also involves various degrees of lymph node removal.  Which then interferes with the muscles and nerves necessary to properly maintain the hygiene of the armpit on the affected arm.  I have had three surgeries in the last four weeks.  I have not shaved my left armpit since March 10, 2010, and its just been in the last five days that I've been able to properly soap and rinse the area without pain or jeopardizing the stitches.  What this basically means that not only do I have four weeks of hair growth under there, because I couldn't move the arm, the area trapped in a lot of heat and drug-saturated sweat.  

This, you can imagine, does not smell nice.  I'd be sitting in my writing chair, minding my own business and something would waft past my nose that smelled like ten-day-old Burning Man.  I was going through three or four shirts a day.  As soon as I could smell myself, it was time to change.  

So here's my first piece of non-essential breast cancer advice:  On the day of your diagnosis, quit shaving your armpits.  Then have them waxed the day before surgery.  Cancer sucks enough without being the source of a "What's that smell?!" face.

I have a discussion with the swamp pit every day before I shower.  First, I tell it that its time has come.  It  talks back to me in a voice that very closely resembles  that of my first restaurant boss (The one that thought most of the world's problems could be solved if something, anything, could be fucked in the ass.  His words, people, not mine.) Then I try to stretch my arm.  After wincing, I then tell it that although it has lived to see another day, its days are definitely numbered.  

Here's the moral of this story.  Cancer stinks and likes to fuck things in the ass, but I will ultimately have the last laugh.

Paging Jennifer Garner.

Last night the Mexican asked me to describe how I see my life.

Do you remember those hand held toys with pegs and hoops submersed in water? You would push a little red button on the bottom of the toy, air would shoot up into the water and the bubbles would send the hoops into disarray. The purpose of the game was to get all of the hoops onto the pegs.

My life feels like that little game. A month ago, all of my hoops were on pegs. Maybe not the right pegs, but on pegs nonetheless. Now it feel like all of those hoops have been blown off and each time a hoop might settle on a peg, a big blast of air blasts everything into chaos again.

I can see why people turn to religion in a time of crisis. It means being able to plead with an invisible hand with the power to push, or not push, that air-blasting button.

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My left breast is officially waving the white flag. Wednesday's second attempt to get clear margins will be the last attempt. If the news is not good this week, it will mean removing the breast. Most of which doesn't much resemble a breast right now. More like the under-inflated half of a yellowish-green dodgeball. With some stitches and a delta of broken blood vessels thrown in for good measure. I try not to look at it in the mirror when I undress.

My arm is rapidly improving. The nerve pain is no longer a debilitating ninja, but simply an indicator of the limits of my limited (but improving) flexibility. I still cannot raise my the arm high enough to shave the world's stinkiest armpit or wear items that require raising my elbow above shoulder level. But I was able to sleep last  night with my arm around Ricardo and to pick up and hug my cats when I got home. (If you are wondering why this latter task would take two arms, you obviously haven't met my cats.)

But I am still very unsettled. Tuesday will be spent at St. Vincent's undergoing a bone scan and a full-body CT scan. The concern being that the cancer, having invaded my lymph nodes, has also invaded other parts of my body. I am also undergoing genetic testing to determine if I carry a genetic mutation that would indicate that I would probably see a recurrence of the breast cancer and that it is more likely that I would get ovarian cancer at some point later in life.

Although I am trying to be positive, it's hard to do after repeatedly getting my ass kicked with bad news.

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Finally, on the topic of hair. I have a crazy head of hair. Thick to the point of notoriety. I used to bitch about it constantly, how it took three elastics to hold a ponytail in high school or how I can't cut it too short without risking looking a hedgehog. My mom used to tell me to quit complaining, because I would never have to worry about going bald.

Oh, the irony.

On the current treatment time line, I'll probably lose my hair in about four weeks. Not one to be caught unprepared, I spent part of Thursday morning investigating my options in socially appropriate head coverings. (In a perfect world, I would just wear an afro wig or hijab everywhere for a few months. But either would be too hot in the summer and would do nothing to help my quest to keep my diagnosis from becoming a distraction once I an able to return to work.)

I know that the current selection of head coverings reflect the female demographic most likely to be undergoing chemotherapy, but YOU HAVE GOT TO BE FUCKING KIDDING ME. On the mainstream websites I found nothing that would work for me on a day-to-day basis, but plenty that would work if I wanted to travel Sante Fe and blend in with the 60-year-old retirees while I shop for crystals and Native American handicrafts. For fuck sake. I did find it interesting while there were options with sequins or crushed velvet, there was not an option that offered both on the same head piece. Because that is something I might have been down with.

In the end, I went to etsy.com and bought a selection of homemade summer-colored scarves and hat-like objects. While they will be unable to fool anyone into thinking that I am anything other than a cancer patient, at least I won't be mistaken for someone on her way to pottery class with the Countess.

I am also going to get a wig. OK, maybe two wigs. One for work, weddings, those few and far between occasions where I don't want to purposely make people uncomfortable. Then I want one for everyday occasions, like messing with the Conveyor at Fifth Quadrant. (The Conveyor is the world's worst pub waitress. They had a contest once and when the other contestants realized she was coming, they didn't even bother to show up. Ask around, she really is THAT BAD.)

I will be watching Alias this week for inspiration. And the request line is now open.....

Happy One Month Cancerversary, Here's a Kick to the Balls.

I would not recommend sitting next to me on an airplane anytime soon.

I've sitting on the wrong side of favorable statistics since November. RU-486 has a 4-6% failure rate. After suffering through the painful unpleasantness of that process three days before the 'cross state championship race, I learned two weeks later that it hadn't worked as it should.

The insertion of an IUD causes contraction-like cramping in only 7-8% of patients. Bingo!

Only 5% of breast cancers occur in women under the age of 40. Mmm-hmm.

This time last week, I was told that there was only a 10% chance that I would have additional positive lymph nodes. I chose to have an axillary node dissection during surgery anyways, just to for some peace of mind.

So much for peace of mind. I had two more positive nodes. One that had a 1cm diameter tumor.

And I still don't have clear margins. The pathology report shows additional DCIS in an area where it wasn't expected.

The doctor gave me two options. First, go in for one last attempt to clear the margins. Second, mastectomy. I've decided on the former without precluding the latter. I am still in the process of working with a genetic therapist and am scheduled to have two full-body scans next week. If the risks of recurrence are unacceptable to me, after those tests are concluded, I can deal with that surgically after chemo is concluded.

So much for my hospital-free week. Back to St. Vincent's on Wednesday morning.

To add injury to insult, I have also developed a very painful nerve issue in my left arm, probably due to swelling that is pinching a major nerve that runs from my chest to my fingertips. Most arm movement makes me feel like someone is pouring hot lead down the inside of my arm. Nothing I can much do about it right now other than stay still, keep up with the vicodin, ice my inner and under arm as much as possible and wait and see.

Being a statistical anomaly is doing nothing for my mental well being. That 90% long-term survival rate is not as soothing is it used to be. I can trust good news about as much as the body that has turned against me. Which is to say, not at all.

I've hit a mental breaking point, one which led me to think one of the thoughts I had forbidden myself to think for the last 4 weeks:

THIS IS SO FUCKING UNFAIR.

I am a fucking state champion bicycle racer. I eat vegetables, pay my bills on time, floss my teeth and use my turn signal. What is it about this universe that decided that I needed to be the one that has to be scarred, needs help bathing and getting dressed and can't even get out of bed without pain?

Something tells me that when I die, someone will tell me its because I voted for Ralph Nader in 2000.

Here is How You Can Help

I've gotten a lot of inquires from friends and family about how they can help me in the next few months. After a frustrating and exhausting trip to the grocery store this morning I am going to wave the white flag and admit that I'm not really helping myself by conducting everyday activities like I used to.

Having swallowed my pride, I have compiled the following list. I present, in no particular order, "Things You Can Do to Help."

1. So ignore what I said about this list having no particular order. This first request is the most important. Stop what you're doing right now and go perform a breast self-exam (or if you're a dude, go buy a bottle of red wine and perform one on your partner...its a win-win situation). If you're not sure how to do a self-exam, go here.

2. Don't be afraid of bothering me. Contacting lets me know that you care, and that helps more than you realize. If I don't feel like talking on the phone, I won't answer it. If I'm too tired to respond to emails, give me a few days to perk up and I'll get back to you.

3. If you know my family, my roommate and best friend Christy or my boyfriend Ricardo, check in on them and see what they need. Not for my well being, but for theirs Dealing with me on a daily basis will not be easy, because it wasn't an easy task when I was healthy. It may be as simple as a bag of coffee beans or as gracious as giving them a night off from babysitting the sullen cancer patient that insists on watching Top Model re-runs and won't give up the remote control.

4. Food. If you know me, you know I'm not the most proficient person in the kitchen. And I am very aware of how important what I put into my body will be to my ability to recover from treatment and get back into a regular (albeit radically modified) exercise program. If you have something yummy and healthy that you would like to share, let Christy know. She has volunteered to coordinate food related help, as she directly benefits from the goodies that end up in our fridge.

5. Magazines, movies and music. I am spending a lot of time waiting in medical offices waiting around and vegetating on my couch trying not to wreck narcotic-induced havoc on my living environment. I have a short reading attention span when doped up and have watched every DVD in my collection (and am plowing through both Christy and I's Netflix accounts at a rapid rate). And daytime TV sucks. There is only so much Law & Order even I am capable of watching.

6. This is one I'm having a hard time asking for. I have great insurance, but it doesn't cover alternative treatments. To keep it short: I'm willing to barter future legal services in exchange for some discounted massage work (or european cycling magazines...an essential.component of my treatment plan).

7. Ask me what I need, and make me answer it truthfully. I'm a horrible liar, it'll be easy to tell.

Hugs and Kisses to all of you and thanks for everything that you've already given me.

Monday Update

Cancer tries real hard to be an optimism killer. Unbelievably hard.

Since I haven't blogged for almost two weeks, here is the medical/clinical/nuts and bolts update. I had a left side lumpectomy on Wednesday. It was a really long day, twelve hours, that was further prolonged by some post-op complications that were probably due to dehydration and the fact that I was coming cold turkey off of a four-cup-a-day coffee habit.

Check-in at St. Vincent's was at 6AM, but I was informed upon arrival that I wasn't scheduled for surgery until noon. I spent the morning in a XXL lavender surgery mu-mu (apparently these things are sized for the lowest common denominator patient, who happens to be at least 100 pounds heavier than I am) being shuffled around the hospital to have various needles poked into some of the more sensitive parts of my body. Like my nipple. Twice. Without a numbing agent. Then it took five tries to get my IV in.

Fuck that needle shit. And that is all I have to say about that.

I watched the same episode of Sports Center three times, took naps snuggled up to Ricardo (the great thing about having a tiny boyfriend is that he fits into the hospital bed with you) and asked everyone that came in if I could have a cappuccino. I'm sure that schtick got old after a bit, but I can't say that I cared. It amused me, and amusements were hard to come by that morning.

Then it was noon. Then it was dark.

I woke up with a migraine headache like nothing I had ever experienced. Adding insult to injury was waking up in the recovery room one curtain over from an old woman who was clearing her throat and hawking up snot at full volume every forty-five seconds.

Thursday and Friday were a Vicodin induced blur-a-thon. I kept time in small increments. Ten minute naps. Thirty minutes per ice pack. Top Model episodes last an hour. Two hours until the next pain pill. Six hours between antibiotic doses. Clean drainage tube three times daily.

I can almost handle the pain and the waiting. Its the setbacks and speed bumps that are killing me right now.

Friday afternoon the surgeon called and informed me the lymph nodes were negative, but that one of the margins on the chest-wall side of the tumor are not completely clear of DCIS. So back into surgery on Wednesday.

This morning I met with my first oncologist. He was the first doctor that I'd met with post-op and he had the distinct pleasure of informing me that I did, upon closer examination, have one positive lymph node. Microscopically positive (.4 of a millimeter), but positive nonetheless. And the tumor was larger than the imaging had originally indicated.

I've been upgraded to Stage IIB. Not exactly the upgrade I was looking forward to this spring.

Then we talked about treatment. There were lots of big words and numbers, but it boils down to this. My odds of avoiding a recurrence of the cancer in any part of my body increase dramatically if my treatment plan includes 4-6 months of chemotherapy.

He says this, and, of course, I start crying. I hate being nauseous. I don't want to lose my hair. And the math is simple. Four to six months is really pushing up against the light I had set at the end of this tunnel: Cycle Oregon.

When the oncologist is done, the care consultant comes in and this is the first thing that comes out of her mouth:

Congratulations, you're a survivor.

And, of course, I start crying again.

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But just it has been the little things that have got me down, there are big things to be positive about. First, the surgeon did a great job. My boob looks pretty much normal. I'd say 85% normal, moving up to 90% once the swelling goes down and the incision heals.

I also got my drainage tube removed this afternoon, a day early. That goddamn thing was the biggest thorn in my side (pun intended) over the weekend. It hurt like hell, changed the way I had to sleep, sit, and walk and left me with a full-on stinky hippie hairy ass armpit. (The tube came out of the incision where the nodes were removed in my armpit and I was under strict instructions to keep the area dry and not to raise my arm above elbow level.)

It's too bad the stupid tube has to go back in on Wednesday. Wednesday's surgery will have three components: (1) Removing additional lymph nodes to make sure that the invasion was limited that single node, (2) Taking out additional tissue around the surgery site in my boob to get completely clear margins and (3) Installing a catheter in my chest in anticipation of chemotherapy. The third component isn't necessary at this time, but after my experience last week, I want to limit my run-ins with anesthesia to the extent possible.

So that's it. The nuts and bolts. There are so many other things swirling around in my head, but those will have to wait for tomorrow. I have a pedicure in fifteen minutes and a date tonight with a hot bath and a long overdue armpit shave. Ahhhhhh.......

Peaks and Valleys.

Be OK with what you feel and feel it.

Pretty much the best advice I've received this week.

The last 24 hours have pretty much sucked. I knew a big funk was coming, but the knowledge that something is coming doesn't necessarily mean that surviving it is any easier.

I decided to go to intervals last night and work out with the team. It was probably good for my body to get some intense exercise, but mentally the session was a disaster. It was impossible to get my heart rate up when there is an evil little voice in my head saying "Why are you here? None of this matters anyways." Too much doubt, too little focus. After we were done, I left quickly, wishing I had just stayed home.

Sleep has not yet become a problem. If anything, I'm sleeping too much. I came home last night and went straight to bed at 8PM, sleeping straight through until my alarm went off at 5AM. Hauled Christy and I to core class. Went through the motions. Tried to sweat my way into a better frame of mind.

It didn't work. I put on a good face for breakfast with a friend, then scowled and sulked my way through a quick ultrasound appointment. (The appointment was to confirm that a spot in my right breast that was discovered during the Sunday MRI was normal. It is.) After that appointment, I had two and a half hours to kill before acupuncture. I could have done anything with those two hours: the zoo, shop, read, write. Instead, I went home, closed the drapes and curled up in bed. Watched bad TV with a complete absence of motivation and optimism.

I am scared. Not of dying. I am scared that living as a survivor will take away the things that gave me joy in the times BC (before cancer). Like being fast and strong on a bike. Like a life mostly free of real worry. Like the confidence in my body and beauty that I have finally found now that I am in my 30s.

This fear is a huge weight on my shoulders and I know it is not doing my beleaguered body any good. Acupuncture this afternoon helped immensely. Not just the treatment itself, but Sarah's wise words.

Be OK with what you feel and feel it.

Somehow I'm confident that being OK with the fear and sadness will make it pass that much faster.

I See a Pink Door and I Want it Painted Black.

If February 23, 2010 was Day 1 of my Life with Cancer, today is Day 6.

And I am already sick of the color pink.

Don't get me wrong. As a general rule, I like the color. I went through a phase a few years ago that involved most of my bikes sporting some sort of pink accessory. My Specialized mountain bike frame was selected primarily because of the pink paint detailing.

And I do appreciate how breast cancer advocates have used simple power of color to raise an unprecedented amount of awareness about the disease. If you are a womens' basketball fan, you would have noticed that many of the major Division 1 programs wore a custom pink uniform during televised games during the month of February. I watched a Tennessee game last week that was almost too much to watch in HD because it was being played in a sea of pink.

Part of this pink overload is my own fault. I spent most of Friday, Sunday and today online. Getting referrals, making appointments, researching. Trying to become an educated patient. There are some great resources out there. Unfortunately, some of the best websites are heavy on the pink. Pepto pink, carnation pink, hot pink, baby pink.

Pink just doesn't jive with how I feel about cancer right now. It feels too passive, too kind. If I had to pick a color that signifies how I feel about cancer right now, it would be a dark, steely gray. Like the color of thunderstorm clouds right before it begins to rain.

Not surprisingly, this is the color I feel right before the start of a big bike race. When I am nervy and twitchy and focused. Maybe a bit hostile.

Driving around the city over the weekend, I've been listening to a lot of the music that is on my cyclocross warm-up playlist: Robyn's "Konichiwa Bitches" and "Cobrastyle," Jean Grae's "Hater's Anthem," Quasi's cover of "Paint it Black." I don't want to be soothed right now. I want angry confidence.

-----

I only cried twice this weekend. The second was on the way home from the hospital yesterday after an early morning MRI. Can't say much interesting about the MRI other than that it was loud, cold and boring.

The techs' attempts to make me more comfortable with a bit of music were thwarted when I realized ten minutes in that they were feeding me two entirely different radio stations simultaneously. I kid you not, I was listening to Sir Mix-a-Lot and Red Hot Chili Peppers at the same time. The MRI machine was so loud that I first thought that it was some sort of crazy mash-up. Once I realized what was happening, trying to sort out what I was listening to became the brain puzzle that I used to distract myself from the fact that I needed to be still for twenty, thirty more minutes. I don't sit still very well.

Being in the hospital as a cancer patient still feels sort of surreal, and the transition back to the outside world (in the form of car rides to the safe harbors of my condo or Ricardo's house) has always involved a huge wash of emotions: relief, anger, sadness, panic. I cry a bit, then things come back into focus. Ricardo gives me as much space as is possible in a moving car. Squeezes my hand, turns up the music so we can listen to something other than my sniffles.

The first crying jag was Saturday night while I was getting ready to go to the ballet and packing for spending the night in Vancouver. Top of my "to-do" list was taking out my body jewelry in anticipation of the MRI. I've done this a dozen times before. Thirty seconds with a mirror and a set of pliers and the physical work is done.

This time when I finish, I'm just standing there in the mirror, looking at my naked self and realize that, in all probability, the nipple ring is never going back in. That there might not even be a nipple there in a month. And if the nipple is there, it will be surrounded by scars and is likely to be pointed in an awkwardly southeastern direction.

My body is never going to look the same.

Tears everywhere.

The onslaught lasted about five minutes, then I washed my face and put on the red dress that Ricardo bought for me in Santa Barbara. It it is beautiful and I look beautiful in it.

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Here is where I am, treatment-wise, as of Monday morning. Waiting for MRI results, which should be back this afternoon or tomorrow morning. I have an appointment next Monday to have a second set of surgeon's eyes examine the images and lab results. Tomorrow I am going back out to St. Vincent's to take advantage of the resources at their Breast Clinic. I have spoken to a nurse and a social worker at the Clinic and, after I expressed a bit of frustration that the resources that I had been given didn't address what it was like to have breast cancer at 32 years of age, they are going to hook me up with some resources (both informational and people) that are more age-appropriate. And, finally, I had a long talk with my acupuncturist and we have a long appointment set up for Thursday to discuss my treatment plan.

Emotionally, I think I'm doing pretty well. I have cycles every 6-8 hours where I get into a melancholic pity-party, but (so far) I have been able to snap out of those fairly quickly. Being able to get out and ride my bike certainly helps, as does all of the well wishes that continue to stream in.

Its already apparent that this process will be a serious character-building experience. Patience is not one of my stronger character traits, but I am being forced to accept the fact it is an essential piece of developing a solid treatment plan. Sort of like recovery is an essential piece of a training plan (and look how well I do with that one.)