Saturday, April 29, 2006

Kilimanjaro's Moth

If you read this, Sister Kili, I hope you understand.
Even if no one else does, I think you will.

I am becoming.
Underneath the petri dish,
They pick and prod and gape
At my splayed organs,
Comparing and staring.
What to do with this throbbing, pulsing anomaly?
I am a threat to their notions of normality.
Don't they understand that becoming must hurt?
In a dream, the ghost of Newton said
There is nothing new under the sun.
No gris-gris in a golden-orange bottle
Can alter what the universe has prescribed.
Hubble's galaxies are creating room for me.
They await my arrival.
Underneath flourescent lights
My chrysalis is forming.
When next they peel these blankets back
This feathery, fluttering in my chest
Will unfold before them,
Pushing them away and drawing them in.
Until Ishvara's breath kisses me,
Lifts me
From this spent casing,
Carries me
To the doorway of the unknown.
From there, the journey is mine to decide.

Saturday, April 22, 2006

My Scars, My Body: Part II (The Radiation)

After my first surgery that took place in December of 2002, the neuro-surgeon referred my case to the one orthopedic oncologist in the state of Louisiana. Regular oncologists aren't trained to be able to treat chondrosarcoma and there simply aren't enough orthopedic oncologists to go around, so it was really fortuitous for me that there was one in New Orleans. As a matter of fact, this doctor was the only orthopedic oncologist in all of Louisiana, Mississippi, and Arkansas. The next nearest one was in Texas at MD Anderson's Cancer Center.

I can do nothing but praise this doctor. When he was told that I didn't have health insurance (due to my Lupus and the exorbitant amount of money it would cost for me to get coverage of any kind), he offered to see me for free at his private practice. His nurse told me to just come for my appointment but not to sign anything or fill out any forms so that I wasn't inadvertently charged. It would be remiss of me not to point out the significance of this one act.

The orthopedic oncologist would have been totally within his rights to leave me to deal with the oncologists at the public hospital even though they weren't trained to be able to deal with my sort of cancer. America's healthcare system is not designed to match people with the doctors they'd need to see in order to get appropriate treatment. If a person with disabilities is lucky, then they might manage to convince Social Security to quickly conclude that they are eligible for benefits that include enrollment in the Medicare program. Medicare will pay for many healthcare needs like doctor's visits and hospice care. However, most people who apply are turned down at least once and it takes almost a year for them to even make that initial determination that most people have to appeal if they really need benefits. To give you an idea of how ridiculous the whole system is, all you have to do is look at my case. After applying for Social Security Disability benefits and waiting for months to get an answer, I finally received a letter from them that said "Despite having Chondrosarcoma and Lupus, we have determined that you are not disabled and therefore not eligible for benefits". Now, I invite anyone reading this to please tell me how this could possibly be a logical conclusion for them to have made.

If I'd been forced to wait for Social Security to declare me disabled and approve my enrollment in the Medicare program, then it would have been over two years before I was able to see an orthopedic oncologist. The only thing that prevented me from having to wait that long was that this doctor was willing to see me for free. I wish I could say that I understood that sort of compassion but, to tell the truth, it still baffles me. However, I can say that every time I think about it, I remember the debt that I owe to others because of all that has been done for me. Maybe I would be bitter about how badly flawed our system is if it weren't for all of the selfless and loving people that have helped me get through my struggles. I know that I'm absolutely off-topic now but I couldn't write about this time in my life without admitting this.

My first visit to see the ortho-oncologist was really heartbreaking. He came into the examination room where The German and I were waiting and he sat down and crossed his legs. He told me that my cancer was very rare and that there were no forms of chemotherapy that had been found to be effective in treating it; The main form of treatment was surgical. He said that if my tumor had been located in one of my arms or legs, then they could simply cut off that limb or area. However, since my tumor was located in my chest, that wouldn't be possible and the best they could do was debulk my tumor. In other words, they would cut out as much as they could and when it grew back, then they'd have to do it again and again and again for as long as I live or until they find a cure for cancer.

I reacted to this news a lot better than I would have guessed would be the case. I did cry a little but I didn't do any sobbing or screaming at all. I think it would have been understandable if I had but there were a lot of decisions to discuss and you can't very well do that when you're hysterical. So, I saved that for the trip home. By the time we got back to the car, I just couldn't hold it in any longer. I remember banging my fists on the dashboard and yelling "Why?!! Why?!! Why?!!" over and over again.

Looking back on it, I can recall having that reaction once before. It was when I was coming to grips with having been molested/raped/sexually abused. I used to ask God why did He allow those things to happen to me. Why did I have to go through so much when some girls never had to experience anything so horrible? For months after that initial visit with the ortho-oncologist, I found myself thinking about all the people who I felt deserved cancer more than I did. Osamma bin Ladin, that pedophile-protecting priest from Boston (Cardinal Law), Karl Rove...there were just so many people whose actions I felt had earned them the "privilege" of experiencing the worst that life had to offer. Yet, they weren't the ones in this situation. I was. My religious background had taught me that one shouldn't hold God responsible when one finds themself in the middle of some horrible situation like a car accident or a hurricane or even a really painful disease. However, I was very angry at how unfair it all seemed. I could write about this subject forever but I really do mean to make this a post about my radiation experience, so I guess I must save any further elaboration on my "pity party months" for another post.

The ortho-oncologist told me that he wanted to give me the best possible chance for survival, so he felt that I should get radiation therapy before the surgery. Radiation can completely destroy some types of tumors and when it does, surgery becomes unnecessary. Unfortunately, tumors like mine are too bony to eliminate through radiation. Still, my doctor wanted me to get radiation anyway because there was a small chance that it might be able to at least shrink the tumor a little bit. Considering how delicate the procedure would need to be to debulk this tumor that was located right next to so many vital organs, anything that might cause even the smallest amount of shrinkage would be worth pursuing prior to surgery. I had to start the radiation treatments really quickly because the surgery needed to take place as soon as possible. The tumor was squeezing the blood vessel that led to my heart and was causing my heart to flutter a lot. If it wasn't debulked in time, the tumor would constrict that blood vessel completely and caused me to have a heart attack. He arranged for me to see a radiation oncologist and begin treatment while he assembled a team of doctors who would need to help him perform my next surgery.

I was extremely blessed in regards to where I got my radiation done. Originally, I was supposed to have it done at Charity Hospital where I was first treated and where my first surgery was performed. Some people outside of Louisiana might have seen Charity on the news during the Hurricane Katrina and Rita tragedy because they had to evacuate the patients and hospital workers due to flooding. The radiation department is in the basement and when I heard that Charity had flooded, I knew that it was definitely destroyed.

The day that I first reported to Charity's radiation department, the doctor in charge there sat down and talked to me. She was quite intimidating. She seemed the kind of person who was very easily irritated and just a tad aloof. She looked at my charts and asked me if I had someone who would be bringing me and picking me up every day. The German said he'd be coming in to New Orleans every day to do it. In a very matter-of-fact manner, she let me know that I was really lucky to have someone who'd do that because a lot of their patients had to catch a taxi or the public bus (known to N'awlinians as R(I)TA) even though they had relatives in the city. The German told her that he really didn't mind because he'd been used to coming into town from Baton Rouge to see me every day since we became a couple. She really perked up her ears when he said that. She said she wanted to go and see something for a second and left out of the room. When she came back, she asked me how I'd feel about having my radiation done in Baton Rouge. I wasn't too sure about it because I didn't know anything about the hospitals out there and, though Charity is the public hospital (meaning that this is where all of the non-insured masses have to "resort" to going when they need healthcare), it really is the best hospital in New Orleans. She could see that I wasn't quite sold on the idea and she explained why she was asking me this.

She told me that she received her training at Harvard Medical School and that when it came to her work as a Radiation Oncologist, she was very snobby. However, she said, that if she had cancer or one of her family members had cancer, she would send them to the hospital that she wanted to get to treat me. That definitely helped me make up my mind. In an ideal world, one would have an abundance of time to compare the two hospitals to each other and visit them both to take a look at their facilities but sometimes cancer does not wait while you take your time and make the best decisions. On the strength of the doctor's statement, I decided I'd have my radiation in Baton Rouge. However, it wasn't as simple as that. She told me that she'd have to do some finagling to try and get me in to be seen soon because my cancer required relatively urgent action. After making a lot of phone calls, she was able to get me an appointment to be seen at Mary Bird Perkins Cancer Center.

I never saw that doctor again and I don't remember her name but I will be eternally grateful that she was as kind and competent as she turned out to be. She was the first and only female oncologist to deal with me. It seems like the field of oncology is overwhelmingly male-dominated just like almost all other specialties in medicine. I wonder if going through that is what gave her such a very serious demeanor or if having that personality already is what made her able to succeed in her field. I've read that the market is pretty glutted with radiation oncologists. Perhaps that's why all the one's I've met were really very good. Hospitals can afford to choose the creme de la creme.

At Mary Bird Perkins Cancer Center, I found out why my original radiation oncologist had sought to convince me to be treated there. Instead of regular radiation, I was to receive intensity-modulated radiation therapy (I-MRT). I didn't realize how advanced this sort of radiation was until I was talking about my treatment plan to the other members of the online support group for people with Chondrosarcoma. Most of them hadn't even heard of it before. To simply say that this is really unfortunate is probably the understatement of the year.

Until I-MRT came along, proton beam therapy (PRT) was considered the best radiation option for my condition. The problem is that it's only available at four facilities in the United States. If you look at the map on the PRT link, you'll see that, with four facilities, it's more available here than it is in any other country. Imagine knowing that there is a treatment option that will greatly improve your long-term survival rate but you won't get it because it's simply too far away for you to travel. You might be saying to yourself, "Well, I'm sure even if I were broke, I could borrow enough money from family and friends to pay for a plane ticket there and back" but it's not that simple.

If you're going to get treatment at a facility in another state or country, you basically have to relocate to that place for at least a month or two. That's where it gets expensive. Can you rent an apartment? Can you buy a car out there or will you be able to rely on public transportation or taxicabs given your health condition? Can someone take off from work to come with you since you won't be able to take care of yourself for awhile? If you can't afford to do all of this, you'll probably have to stick with the treatment options that are close to where you live. If you're extremely lucky, you live close to a PRT facility. If not, then your treatment options may be limited to traditional radiation therapy.

I'm not saying that you'll probably die if you receive regular radiation, though. That is NOT the case! My mother received regular radiation therapy and last year she made her five-year remission mark for ductal carcinoma in situ (breast cancer). Most of the people who have survived cancer have done so with traditional forms of radiation. However, some of us with rare cancers or cancers in hard to treat areas (close to vital organs), need treatment that's different from how doctors would deal with "regular cancers". PRT provides that.

There were a few people in the Chondrosarcoma support group who had received PRT. I remember feeling very wistful when listening to their experiences but that was only before I started doing research on I-MRT. It's a newer form of therapy that was just perfect for treating my particular cancer. I-MRT basically splits the radiation beam so as to hit the tumor more accurately without zapping the surrounding organs. Really, it's one of the best treatments for any cancer patient but, like PRT, it's only available in a few places so most people don't receive it. I was blessed to have such a facility less than two hours away from my hometown. I didn't need to deal with that aching "what if" feeling any more because I was actually going to receive top-notch treatment!

Being treated at Mary Bird Perkins wasn't the sole extent of my blessings, though. When I got there, my new radiation oncologist told me that I was just in time to be the first candidate for a new immobilization device. In the past, patients were simply told to lie down on the table and keep very still during treatment. However, shortly before I came, the hospital had decided to purchase this new device that was being shipped to the U.S.A. from Germany. The doctors were really excited about getting it. It was sort of like a rectangle-shaped pad that was the length of my body. It was full of some sort of beads that made it feel a lot like a bean-bag. They had me lie face-down on top of it and they manually manipulated the pad so that the beads inside of it were pushed up along side every part of my body. They then used a vacuum attached to one end of the pad and sucked the air out if it until the pad was hardened into the shape that they had made with the beads. It created a mold that was the exact shape of my body. So, when it was time for my treatment, the radiation therapists basically popped me into my mold where I was unable to move out of place for the beams.

When I first found out about the cancer and was told that it had probably been in my chest for years already, I was really upset. I felt like maybe it was my fault for not going to the doctor sooner for the back pain that I had written off as simply the result of carrying a bookbag full of biology and chemistry books around campus. I wondered if maybe they could have cured me if they had found it when it was smaller. However, I've come to see that none of these thoughts should bother me. If I had been diagnosed even a year earlier, I would have had far different treatment--treatment that wouldn't have been nearly as good as what I received. So, I really believe that it was God that allowed things to be timed as they did. I don't know what else I could possibly attribute it to if not God.

Because of where my tumor was, the radiation had to target both my chest and my back. Clear tape was placed on sections of my back to make sure that I didn't wash off the markings that delineated where they were supposed to irradiate. Unfortunately, I proved to be quite allergic to the tape and it had to be removed. Instead I was told just to refrain from washing my back. For a bodily hygiene fanatic like me, that really didn't sound like a good option but the alternative was getting zapped in the wrong places so I was sure to follow the directions. I still had to have the markings re-darkened every few days or so, though.

I didn't particularly like the notion of being written on even though it was for a good reason. However, the radiation therapists who prepped me and put me in position everyday were extremely compassionate. Even if I had felt tempted to complain that would have been impossible for me to imagine doing given how supportive and encouraging they were. When I went for my first treatment, they all came and introduced themselves and asked me about who I was and who my family was and what sort of cancer did I have. From then on, they'd ask me about how those people in my life were doing. I did wonder how in the world they managed to remember all those details about me given all the patients they saw every day. They really made a very serious effort to get to know me as a person.

Radiation can be very deceptive. When you're lying there on the table, you can't really feel anything besides the vibrating of the moving machinery. It seems quite innocuous. There was no tingling sensation, no feeling of warmth, nothing. The first five treatments went by with no visible effect at all. If only it had stayed that way...

First my skin darkened above my left breast and down the center of my back. Then I my appetite decreased and my throat became sore. My skin became dry and the nurses gave me Aquaphor to put on it. Soon I lost my appetite altogether. Even if I had wanted to eat, the fact that it hurt to even try to drink water would have changed that. Cancer Services of Baton Rouge, an organization that deserves more praise than I could ever give it, provided me with a liquid food supplement (Ensure) to help me stay as healthy as I could. The German looked up all sorts of recipes that one can make using it in order to make it as appetizing as possible. He made pancakes using Ensure instead of milk or water. He made muffins and macaroni with it too. Of all of them, the best recipe was the Ensure shakes. He mixed a dollop of ice cream into the Ensure and then stirred in some pulverized Oreo cookies. If it hadn't been for him insisting that I eat every day, there is no way that I could have kept up a healthy weight.

After a couple of weeks, the top layers of skin on my back turned into leather. It turned completely black and began to crack and peel. The peeling skin would snag on my clothes and get pulled away from my back. That was quite painful because the skin underneath the peeling layers was extremely sensitive. Even though it was summertime, I had to stop wearing shirts with my back out. Everytime I looked at my back in the mirror, I cried and cried. After awhile, I decided to stop looking at it. The German took care of me the whole time. He never once acted like he was grossed out when he put the Aquaphor on my back and gently removed the dead skin.

Eventually, I really couldn't do anything but sleep all day. I begged The German to let me stay home in bed but he never let me. He reminded me that if I skipped sessions, I'd only have to keep going back for an even longer period of time, so I never missed a single one and I'm really proud of that fact. It was really a test of my ability to endure anything that life might put before me. A few times, one of The German's sisters came over and braided VanGoghGirl's hair so that I didn't have to comb it every day. I don't know how I'd have made it through this period without both of our families.

My mother and father let VanGoghGirl come and stay with them for weeks at a time during that summer. My sisters-in-law gave my daughter the motherly touch that the exhaustion kept me from providing. The German's mother, who spends most of her time flying back and forth around the country for her job, came over and visited with me and let me cry to her. All of the people in The German's family are very quiet but they are also very good about showing how much they love me and when they do speak, their words are always very, very comforting. Even though I still have a huge, dark patch on my back and on my chest that will always remind me of all that the radiation did to me, that period will always have a lot of good memories associated with it too.

In the next part of this series, I'm going to discuss my treatment after radiation and where things stand now.

Monday, April 03, 2006

My Body With Cancer: The First Assault

I've told my cancer story to so many people that I didn't realize before now that I'd never written about it here. It can be really mentally exhausting to discuss it sometimes because, even as cancer-stories go, mine doesn't have the nice, neat ending that other cancer survivors can give. I always like to hear those cancer-stories where some person, who was really saintly before cancer, gets sick with it and finds the courage to be strong for everyone else even while their body falls apart, only to be cured in the end and go on to live until they're 104 years old. If only I could have one of those stories like that, having cancer might not be so bad. Instead, mine is ugly, gets uglier, and is all told by a girl (me) who was never all that nice and sweet in the first place. Ah well! Such is life!

I was a college student when my cancer story began. I took a lot of classes each semester and this meant that on most days I had to walk around campus with a bookbag full of very heavy chemistry and biology books. I had been suffering from chronic back pain which I attributed to the strain of carrying around so many textbooks. I would get The German to rub the capsaicin cream (e.g. BenGay, Aspercreme) that I some times use for my arthritis pain on it and this helped ease the pain even though it didn't eliminate it completely. This went on for over two years but it never got so bad that I felt the need to go to the doctor about it.

It was springtime in 2002 when I came down with a really bad cold. I went to see the campus doctor who usually wrote out my maintenance prescriptions for me. While I was there, I also mentioned my back pain since I knew he specialized in Sports Medicine and might have some recommendation for dealing with it. Because he knew that I had Lupus, he was concerned that with my immune system problems I might not have a cold but instead/also have contracted Tuberculosis (TB), so he swabbed my mouth to test for it. It takes a day for the test results to come back and, since it was Friday and the clinic wasn't open on weekends, it would be Monday before he could see it. Because he didn't want to wait that long before he'd know, he wanted me to go and get a chest x-ray so that he could get a look at what was going on in my chest that afternoon .

I was a bit reluctant to get the x-ray because it would cost me a hundred dollars that I didn't want to spend just because it was a Friday. Besides, the lab was all the way across town and I'd probably have to catch a couple of buses and the streetcar to get to it. I called The German and he urged me to just get the x-ray. He said he'd give me the hundred bucks the next day to make up for it, so I went along with his and the doctor's advice. One of my best friends gave me a ride uptown and stayed with me so that I'd have a ride back to school too.

When we got back to the school, I gave the folder with my x-ray films to the doctor and waited while he looked at them. The lighted board where they hang the films is right next to the door between the exam rooms and the waiting room. Since the door has a big window in it, I could see the doctor viewing my films. I wasn't really all that concerned until I saw more and more of the staff going over to look at them.

After a long while, the doctor called me to the back. He showed me a mass on one of the films and told me that he wasn't sure what it was but it shouldn't be there. According to him, it was probably just some fluid built up around my left lung but it needed to be looked at by a specialist. He called the public hospital and scheduled an appointment for me to be seen at the respiratory clinic in three weeks.

When I went for my appointment at the respiratory clinic, they took more x-rays and scheduled lots of tests. After lots of testing, they couldn't figure out what was wrong with me, so they referred me to the rheumatology clinic. The rheumatology clinic determined that this mass wasn't Lupus-related so they passed me along to the neurology department.

By this time, it was late Autumn. At neurology, they decided that I needed to have a needle biopsy in order for them to get an idea of what this mass was made of. Looking back on it, I don't know if I should have done some research on what a needle biopsy is before I went in to have one. On one hand, I don't think that a person should have any medical procedure performed on them without understanding it but, on the other hand, if I had known what it would be like, I probably would have been a lot more afraid.

In preparation for the biopsy, they made me lie down on a table on my stomach. They put a topical anesthetic on my back and then, once that numbed my skin, they gave me an anesthetic injection. Even though this was uncomfortable, I was able to just grimace through it. I asked the doctor why they didn't put me to sleep while he did this procedure. He said that because he had to push the needle through my lung, he needed me to exhale completely and I had to be awake in order to do it. That definitely made me gulp!

There were four medical school students in the room with him. I thought they were just going to watch but they were there to lean down on my chest to help get more of the air out when I exhaled. I was hoping that it wouldn't hurt since I had received two forms of anesthetic but it didn't turn out that way. The anesthetic only took the edge off because when the doctor pushed the needle into my back, I could feel it slowly going through my lung. This was NOT at all pleasant. The fact that they had to do it four times in order to hit the right spot certainly didn't improve things, either. The procedure left me whimpering and in tears.

I wish I could say that the needle biopsy was at least really helpful but it wasn't. When the laboratory examined the sample, they found that it was mostly stromal cells which didn't tell them anything. At that point, the doctors decided I would need to have surgery so they could go in and get a sample of the mass. The neurosurgeon, a beautiful African-American woman, said she would also try to remove it completely at that time, if they could.

I went in for my surgery on December 6, 2002. The German's sisters agreed to take care of VanGoghGirl for me. My mother, my oldest brother, and The German kept me company at the hospital. When I woke up after the surgery, I was lying flat on my back with a bandage that started at the nape of my neck and extended down my gown.

When the doctors cut me open, they realized that the mass was actually a bony tumor (which was why the needle biopsy had been uable to extract a sample) and it wasn't going to be possible to remove it during that surgery. However, they did cut out a piece of it to send to the lab and then closed me back up. I had been told to expect the incision to be about three or four inches across. Instead, I had a fifteen-inch long incision going down the center of my back held together with thick black stitches from the partial thoracotomy that they'd given me. Compared to the pain I felt, the needle biopsy had been a cakewalk. In order to sit me up, they had to grip the corners of the sheet underneath me and lift it because directly touching my back was excruciatingly painful.

After spending about a week in the hospital, I was released. This was when I began to take narcotics. They started me out with two Percocet tablets every four hours and even that didn't eliminate the piercing sensation I felt down the length of my spine at all times. It took me about a month to get to the point where I could stand on my own and it was several months before I could bathe myself or go to the bathroom without help. However, it was only about three weeks after my surgery when the doctor called me in to hear about the lab results. That's when I was told that the tumor was a rare, malignant bone cancer called Chondrosarcoma. The tumor was attached to one of my ribs (on the left side of my chest), pushing into my spinal column and wrapped around the vein going to my heart. She told me that there was only one doctor in the state who might be able to help me and fortunately, he was located in New Orleans and willing to see me at his private practice.

Although I had hoped this surgery would be the end of my troubles, it was only the beginning of my fight with cancer. Fortunately, I lived to fight another round but not without any scars. Even though the incision healed well, I still ended up with a pale one-inch long indentation at the nape of my neck and a thin brown scar down the other fourteen inches of the incision site.

Before all of this began, I was a wispy 115 pounds and hadn't worn anything bigger than a size 5 since two weeks after giving birth to VanGoghGirl years before. I loved my body. Like a lot of girls in their early twenties, I practically lived in cropped tops and halter-top shirts. Why not?! I looked great in them. After my surgery, I just didn't feel good about myself anymore. Imagine going from constantly getting compliments about your figure to suddenly being "disfigured".

Of course, I can think about it rationally and say that I should only be glad that I had been in the hands of such a skilled neurosurgeon but it would be dishonest if I didn't acknowledge how much my depression was exacerbated by the outward effects of the surgery on my body. You can't wish away your cancer but if there are no visible signs of it, you can at least look at your body without instantly being reminded of what you've been through. Well, that's what I imagine would be the case. I don't know for sure because my first surgery made it impossible for me to ever have that experience for myself. The radiation that followed proved to be equally unkind.