What Chemo-Brain has Done to Me

Chemo-brain. Some doctors dismiss it as nothing, and those that recognize it is a problem seem to be unable to do anything about it. If you're alive, you're not in pain, and you can keep food down then everything else is just something to cope with not resolve. The cognitive difficulties most often reported are in the storage and retrieval of memories, facts, words, numbers. It can effect both long term and short term memories as old doors are locked and the keys lost, and new doors cannot be unlocked at all. Ask me my social security number and I'll probably blank out for a minute trying to remember it. Ask me my phone number and it might take me a couple of minutes. Ask me my cell phone number and all you'll get is a helpless and frustrated stare.

Of all the side effects of treatment, chemo-brain probably ranks number one for me, and it's because my identity and self-worth are entirely wrapped up with my intellect. It's pathetic and even considered by some to be a vice, but it is the truth. All my life I have thought of myself as intelligent. My parents and my brothers are crazy smart and even though I had to work harder and could never achieve what came so easily to them I still felt I could hold my own. I loved being the smart kid. I loved knowing the answer, knowing more, asking questions, and sharing what I knew with others. I have come to realize that this arrogance is probably what made me such an unpopular kid, but that's a different story.

My entire person was built on a foundation that I was smart. I might not have been pretty, athletic, or fun, but at least I was smart. So when chemo started chipping away at my brain it also chipped away at my being. I was losing myself and what was worse was that nobody seemed to notice or care. I'd lose my train of thought or use the wrong word and people would laugh and tease me. I'd struggle to remember something I was certain I knew and people couldn't understand why I became so frustrated and angry. Even those closest to me told me I was making too much out of it, that I wasn't "stupid."

But I knew I was losing it, losing things, losing knowledge. I knew my head wasn't working right, and that nobody else seemed to register it threw me. Perhaps I was delusional all along. If nobody has noticed that I became slower, more forgetful, and more everything, then maybe I wasn't that smart to begin with.

Yet, I refuse to believe that. I guess I still hold strongly to the delusion that I once was pretty smart, and it pains me that people don't see it. It pains me that they laugh at my mistakes without knowing that it's more than just a mistake, that just a couple of years ago I never would have made such a mistake. Writing these posts pains me because I cannot put into words exactly what I mean and I know I was once able to do so with ease.

America

As I was flipping channels I saw this guy being interviewed about the attacks in India and how they seem to be targeting Americans. It was his opinion that people who go overseas and act American are just asking for trouble. This pissed me off. I know the rest of the world is very unhappy with us. I know that wearing something with an American flag on it or a Western Washington University sweatshirt is like wearing a neon sign. Rationally I know that Americans should try to tone down the American pride thing (deemed as arrogance elsewhere in the world) but it still burns me up inside that we can't go outside our country and say, "Hi I'm an American, but I really like your country, so what do you say we have a bite to eat?" Of course there would be trouble with translation books and whatnot....why haven't they invented implants that automatically translate foreign languages?

O Canada!

I have survived yet another trip to the Great White North. I don't know why I keep going back there, except that it's probably the only foreign country that I'm ever going to visit. The last trip up to Canada we ended up in hours of traffic due to a mobile home fire. The mobile home was on a giant truck and thus took up several lanes of traffic. The trip prior to that Peter and I nearly died on a 100 year old wooden roller coaster of death. (A long story.)

So why go back?

Nothing better to do, and someone else paid for it.

I'm just glad to be back in "the States" where French translations are not mandatory, road signs all say miles not kilometers, and America isn't a dirty word.

My Mom Would Have Cried Too

I cry about as much as it rains in Seattle. It's not all about saddness for whenever I am overwhelmed with any emotion it usually results in tears. I cry for our troops, for animals abused, for the suffering of people, and I've even shed a tear for trees. I also cry when I hear the National Anthem, when military planes fly overhead, and when I laugh really hard.

It is no surprise then that on Election Night I cried every time they declared a state for Barak Obama. When that moment finally arrived and Obama was officially elected President, I couldn't stop the tears despite all efforts to try. And for once, Peter didn't tease me. The sheer magnitude of that night was breath-taking, and in my world it called for tears.

The crying comes from my Mom. She didn't wear her heart on her sleeve, she held it out to show all the world. She cried over the National Anthem too, as well as the Preamble to the Constitution and the Gettysburg Address. She cried for the Little Rock Nine, for Martin Luher King, for Malcolm X, and even for Jesse Jackson when he didn't win the nomination to run for President.

When she was a little girl she was friends with a black girl and didn't understand why her mom wouldn't let her in the house. She loved sports so as a teen her best friends tended to be athletes, and some of them happened to be black. She lived in a racist little town in Eastern Washinton and one day she was spotted talking and laughing with a black boy. Her father beat her. Proper white girls didn't associate with Negros she was told, but that didn't stop her. She wanted to march on Washington D.C., but she only made it to Spokane, Washington. Still, it was one of the most memorable experiences of her life.

On Election Night she would have held my hand and cried right along with me. For an African American man with such grace and dignity and hope to be elected President of the United States of America would have filled her heart with joy and her eyes with tears.

So as that moment happened, and I was crying for my country with more pride then I have ever felt, a part of me was crying for my mom because she didn't live to see it. A part of me cried for me because I did live long enough to see it.

30

I'm 30. There was a time when that was considered a long shot so I should feel greatful. What I actually feel is the same way many women feel when they turn 30...old. I don't know why that is. Why is 30 such a tragic age? My only conclusion is that it just is. I'm 30 now so that means I no longer get the shocked look when I tell people I have cancer. Cancer at 30 sucks and is still 10 years below the 'normal' margins, but it's not so far fetched as cancer at 25. I have a CT scan this week, and an MRI later in the month. I'm worried. I'm always worried but this time I just have this feeling that things aren't right. I'm so tired. I feel that melange that I carried with me before my diagnosis and during chemo. Maybe it's just the stress of Peter maybe losing his job and our health insurance. Maybe it's my ulcer acting up again. So many maybes. I'll know more by the middle of next week. Dr. Lee doesn't like to let people wait through the weekend for results, but there was a mix-up in scheduling. It's gonna be a long weekend.

Vexed

Okay, so here's my beef. Our lovely little Seattle house has a back yard, and the back yard exits onto an alley. There, in Grand Theft Auto style, is a tiny car port/garage. So far so good right?
The problem with this scenario is that anyone that happens to drive down the alley (it's a busy alley because there are businesses all along the opposite side) can dump whatever shit they want in our flower beds.

Which leads to the obvious question: Why are there flower beds in the alley?Answer: Hell if we know. There's a wooden retaining wall then about 3 feet between the wall and the fence, and the space in between is filled with dirt, and thus a flower bed (assuming one actually planted flowers there).

Currently the flower beds are EXTREMELY OVERGROWN. I was working my way to them, even started pulling down some of the evil black berry and other bad weeds that were stubbornly climbing the fence into the yard. Then I was hit with this tumor in my brain thing and that effort fell by the wayside.

But, even though it is overgrown is that a good reason for people to dump their garbage in it? The cigarettes from the people across from us are bad enough, but food bins from the sushi restaurant, milk crates from god knows where, and a discarded gutter from one of my not so kind neighbors is infuriating.

I liked the days when our garage got tagged instead of this because this requires cleaning up other people's dirty shit (not to mention a trip to the garbage transfer station, aka "the dump" to dispose of the gutter).

Pain and Itching

September 9, 2008 I had gamma knife radiation to the spot in my brain where the tumor was. All my docs told me radiation wasn't painful, and that the contraption that would be screwed onto my head would only cause a "little pressure, and some minor discomfort." Liars!

First they gave me lidocane shots to the 4 spots on my head where the screws would go. Lidocane is what dentists use and feels like a bee sting. Then they pulled out a metal contraption that was screwed onto my head. (Check out the pictures in my "brain surgery" album.) After some measurements and scans the doctors finally came up with a plan and started the radiation.

It turns out that the location of the tumor was in an area too difficult for the gamma knife machine to make the calibrations on its own. This meant that each calibration, 9 in all, had to be done manually. It was a process that took twice as long and required twice as much manipulation (straining and pulling) of the contraption screwed to my head. By the 7th calibration, the lidocane was wearing off. I sucked it up like a trooper but relief was a long way off. Removing the contraption is normally painless, but since I was no longer numb I felt everything. Peter did his best to distract me from the discomfort, and the nurse gave me some Tylenol, but neither helped much. I was promised that I'd be given more serious pain medications as soon as I was moved to the room I was going to stay in overnight.

Dirty, filthy liars! Of course there was confusion, and nobody was sure what was going on, and the medication hadn't been ordered, and I'm fucking cursed! Peter left to move the car and by the time he got back I was crying hysterically from the pain. He did a fabulous job keeping me calm and if not for him I would have completely lost it. Finally, they gave me Toradol, but it only dulled the pain. Then my nurse gave me Vicodin on top of the Tylenol and Toradol. Things got remarkably better after that.

The rest of the night was relatively quiet and uneventful. In the morning I was given more pain med and discharged. By mid-afternoon, the pain med wore off, and I remembered that having holes in one's head is painful. I immediately rifled through my stash of meds and found one that I took after my brain surgery. Things got better after that as well…

…until Thursday when the itching started. I don't know how chemo and radiation have made me so hypersensitive to meds, but it's fucking irritating as hell. A med I took a month ago without a problem now gives my hives. Luckily, the pain isn't too bad because, when faced with the choice of pain or itching, I opted for pain. However, it's 3am, my head hurts, and I'm still so itchy that I can't sleep. If it isn't one thing, it's always another.

The Bitch is BACK!

On Thursday, July 31st I boarded a bus for an eye appointment. In the parking lot at the bus station I had a seizure. I was scared because my seizures are waking seizures and this one came in the middle of the day. Turned out it wasn't my epilepsy causing the problem. The CT Scan of my head done in the ER revealed a 3 cm tumor on the back of my brain. Doctors were optimistic. Just one tumor. Really clear margins. Right on the surface and in a non-vital area. Perfect candidate for surgery, so on August 11th they cut open my skull and pulled out about 99% of the tumor.

The recovery was surprisingly painless and within 4 days I was home and recovering well, at least physically. Emotionally and mentally I'm a little messed up. Brain not functioning at full capacity and I'm struggling with more than my usual amount of anxiety. Apparently, it's all very normal.

The Plan:
Despite this set back, the Herceptin has continued to keep the cancer in remission below the neck, so I'll still do that treatment every 3 weeks as usual. But what to do about my brain? In early September I will have 1 treatment of GAMMA Knife Radiation. Gamma knife is really fancy radiation that targets a specific area rather than the whole head. This is good because there is less chance that any damage will be done to the healthy parts of my brain.

The only problem is that there is no treatment at the moment to prevent more tumors from growing in the brain. They can zap it well and good but something MIGHT escape to do some damage. We already know there's some cancer cells floating around my body or they wouldn't have found a home in my head in the first place.

So I'm on permanent wait and see. Every 3 months I'll get new scans and I'll learn if I'm all clear or if I'll need more radiation. Spot treating is not ideal, but it is the best solution for the present. At some point I might have to radiate the whole brain, but Dr. Lee and my other doctors want that to be one of our last resorts.

That's that. The fight goes on. The cancer just won't die...but neither will I. HA!

Farewell to a Fellow Cancer Fighter

Ever since the Ted Koppel special "Living With Cancer" I was drawn to Koppel's best friend Leroy Sievers and his blog "My Cancer" on NPR. Leroy spoke so honestly and eloquently about what it means to have this disease, to fight this disease, to live with this disease. It felt good to read his posts about the humor and the horror of cancer and all else in between. On August 16th, 2008 Leroy Seivers passed away. The following is the obituary from NPR.

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Journalist Leroy Sievers, who covered wars, genocides and natural disasters in more than a dozen countries — and who chronicled life after his cancer diagnosis for NPR on-air and online — died Friday. He was 53.

In his radio essays, in his podcast commentaries and on the blog, My Cancer, Sievers addressed the polite silences that surround cancer. He described his early internal debates about whether it was worth it to buy new pants and shoes. He spoke frankly about his hope that he would live long enough to read the final installment in the Harry Potter series. (He did, reporting avidly on the 759-page volume in a blog post written late at night, immediately after he finished the book.)

"Leroy gave voice to a topic that we are very uncomfortable with — death and dying," McDonnell said. "My Cancer had a face and a heart and a smile."

Why Blog? Because 'No One Walks This Road Alone'
In May 2007, Ted Koppel hosted a three-hour, prime-time Discovery Channel documentary, Living with Cancer, in which he interviewed his friend and longtime colleague. In interviews before the documentary aired, many reporters asked Sievers variations on one basic question: "What do you get out of writing the blog?" He concluded one My Cancer post with an answer: "A daily reminder that none of us walks this road alone. What could be better than that?" Sievers blogged about his cancer almost every day. Even on days that he could "forget" about the disease, he argued, it was important that he share his reflections for the many readers who didn't have such a momentary reprieve.

Written by Shomial Ahmad

Hoop Dreams

I just went to what might possibly be the last Sonics game in Seattle. Against crazy odds we actually won. The excitement of winning a challenging game in the final seconds is why basketball is a great sport to watch. However, the win wasn't the highlight, nor was the two minute standing ovation for Gary Payton. The highlight was when the entire crowd got to their feet and for several minutes chanted, "Save our Sonics!" Not surprisingly, I cried. It was nice to be there and feel that love and devotion to a team that this year finished second to last but many years ago actually won a Championship game.

My mother loved most sports and she was a passionate and devoted all-weather fan of all of Seattle's teams. I remember how her eyes would tear up whenever she told the story of the Sonics winning the championship. Since she was picking my brothers up from something she wasn't able to see the win, but she was listening to the radio broadcast in her car. When the final buzzer sounded, everywhere she looked people were waving and honking their horns and just simply enjoying the feeling of Our Team winning the Big One.

I am aware that there is something fundamentally wrong with the NBA, and people have lost interest in it. I agree that it is shameful to hold the city responsible for whether the Sonics stay or go by the jackass that bought them. However, I also feel it is wrong for the city and the state to do little more then gestures to keep the team here, and sad that no one seems to care. I know my mom would care, and she wouldn't be able to sit idly by while they took her team away.

If only the Sonics had more all-weather fans, more people chanting, "Save Our Sonics," and more people like my mom who would be heartbroken to see them leave. If only...

"Goodnight Wesley. Sleep well. I'll most likely kill you in the morning."

I have DSPS: Delayed Sleep-Phase Syndrome

It means my internal clock is all wacky and I’m wide awake when you all are sleeping soundly in bed. Note that the time of this post is 3:40 am, and I’ve been staying up until 6am off and on for the last month or so. If it’s not one thing it’s another with me huh? Well I took melatonin for a few nights and it worked but then I stopped because I’m afraid I’ll become dependant. I’ve always had insomnia and when it got really bad in college my doctor told me to take benedryl. I don’t think she expected me to stay on it very long, but that’s what happened. I couldn’t sleep without it and I couldn’t risk not sleeping and missing work or class. Then my heart started acting up and it became obvious that the benedryl was the cause, so with the help of my dad and my husband (then fiance) I kicked my dependancy. It was an unpleasant process and one that I’d rather not go through again. But I have to do something because the alternative is equally unpleasant. So tomorrow I’ll take the melatonin again and this time I’ll take it for a couple of weeks like my doctor told me to.

I Killed Cancer

After two years of fighting a cancer that no one thought I'd beat I'm in remission. As far as anyone can tell there is no cancer in my body. I'm still trying to wrap my head around it. I think of all the women (and men) who have lost their lives to this disease and I know I will eventually be one of them, but for the time being I have officially killed the cancer that was determined to kill me. Go figure.