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.


Anonymous said...

I cannot imagine going through what you have gone through.I look at all the pain and turmoil I have had in my life and it just doesn't seem to compare to what you have experienced.I don't know if I could have made it through.I guess having a loving and supportive family helped though.My heart goes out to you and I hope you are in complete remission.

(Cocoa Lounge)

bint alshamsa said...


Thank you so much for the encouragement. Whether it's cancer or heartache or bankruptcy, lots of people have experienced a lot of pain and turmoil and no matter what you go through, it takes the same determination to keep trying in order to survive any of it. However, having the family I have did help more than I could ever express even though a lot of those "family members" weren't people who were biologically related to me. I've learned to count as family all of those individuals who choose to be a long-lasting and positive force in my life. So, look out because if you stick around long enough Shawna, you could end up getting adopted yourself. ;o)

Disability Blogger said...

"how ridiculous the whole system is"

It really is. I used to be a disability claims examiner (Social Security Disability Blog)and I could hardly stomach the fact that examiners were forced to make as many denials as they are. Did you
get approved prior to a hearing or did you ultimately have to go to a disability hearing to win your claim?

brownfemipower said...

hey bint, i just found out that there is a blog for disability day (or against disability, i can't remember which) on may 1rst--i think you should submit this or your other one--or maybe find some way to catalogue them so that you can submit both (don't ask me how to do that!!! :p) let me see if i can find the link--it was on my site somewhere, i'll find it and get it to you...

brownfemipower said...

here it is--i had to get it off of vegan's site cuz i couldn't figure out how to get it off of my site!! :p
if i'm caught up on my stuff, i'm gonna participate--

bint alshamsa said...

Isn't it terrible?! I have a confession to make here. I grew up in a very conservative family. I was taught that as long as you worked hard, you'd always come out on top in the end. These days I look back on that and realize that I had really "drank the Kool-Aid" in one big eager gulp.

Having worked since I was old enough to get a worker's permit in high school, I really believed that Social Security would see the validity of my claim and that I had done my best to pay into the system by working until I just physically couldn't do it anymore even. Unfortunately, I got my first big wake up call.

Ultimately, I had to get a lawyer and appeal the initial decision. Since I was labeled as terminally ill at that time, the attorney sought to have my case expedited through the "Tirri"(?) act. Even though that happened, the next decision was just the same as the first. So, we had to go to a hearing. We got all the way down there to the court house and something happened that worked in my favor.

The judge that we'd been assigned was just coming back off of leave and my case was the first one he was due to handle. I'm sad to say that reason why the judge had been on leave was because his brother had suddenly died of cancer. He took a look at my files before my attorney was going out to call me in before him. He read a few of the reports and closed it back up. He told the attorney not to bother bringing me in to testify because he couldn't deal with going through the rigamarole just to approve the case. He was a bit upset that the case had to get all the way to this step before it was approved given the fact that there had been no guarrantee that I'd even survive long enough to make it to the hearing.

I was really grateful for the way things worked out. I know it might seem corny to someone else but I felt like that judge's brother reached down from the great unknown and nudged things in my favor a bit, like a little gift from one person with cancer to another.

But yes, it is all very very ridiculous. I truly didn't believe that they were ACTUALLY turning down perfectly eligible claims at Social Security. I don't blame the folks who they forced to do their dirty work because these were folks just trying to earn a living like everyone else. However, there is some really bad karma building up for those who have the power to change this injustice but prefer not to do so.

bint alshamsa said...

Good looking out BrownFemiPower! I am definitely going to participate in it. I swear, coming across your blog was one of the best things that has happened to me in a very long time.

ASH said...

bint: My wife did the targeted beam radiation...don't remember if it was PRT, but probably was. This was for the recent tumor on her pelvis. She had the same experience you did, sunburned skin, loss of appetite, etc. However they didn't draw on her, they gave her tiny (pin pricks really) tattoos which they lined the machine up to every session.

Now she just jokes that she got some "rad" tattoos from her cancer experience. I just roll my eyes. :)

Just Jane said...

Five years ago my father suffered a debilitating stroke that left him partially paralyzed, unable to speak, feed, or even toilet himself. This man had worked for more than thirty years. He was in the Army for twenty-one. Yet when my mother filed his claim for disability benefits, it was initially denied. Even when it
was approved it didn't start until nearly a year later, and believe me, they desperately needed the money much earlier than that. I'm sorry that on top of your illness you also had to deal with red tape.

Your German rocks and so do you.

Anonymous said...

sis Bint, thank you thank you for sharing!!! I want to reread this again tomorrow before I make any attempts to comment. i have so much to say!!! and want to thank you again for directing me to your blog :)

Bent El Neel said...

in my own life, i witnessed 5 beautiful women suffer from remind me so much of one of them. My sis in law who has now been cancer free for 3 years. You seem to have the same fighting defiant spirit.
You will be in my prayers always :)