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.

15 comments:

Jane said...

Thank you for sharing this. I can't imagine the suffering you've endured. It seems cliche to say but while reading this I can't help but think how strong mentally and emotionally you must be to have gotten through to this point. I hope you will decide to continue your story here.

G Bitch said...

Oh my. I, too, thank you for sharing. Your story is amazing, moving, breath-taking--I read a lot with my mouth wide open.

I am so glad you shared this. So very glad.

brownfemipower said...

Bint girl--i love you so much for sharing with us.
thank you.
~xoxo

Bint Alshamsa said...

Hmmm...I really don't know how having cancer has changed me exactly. It has made me a lot less willing to put up with having negative people in my life. I think that's a good thing but along with that I think I've almost completely lost my ability to be sentimental. I often wish I could go back to being able to take life for granted and just enjoy it without thinking about how everyone I admire will/must come to an end eventually.

Blackamazon said...

I came over from The TGW because I wanted to applaud yoou here for being so candid and open I had no idea how much you were when i read this post

Thank you

Bint Alshamsa said...

Thank you for the support. I didn't know that others would really find it interesting. The encouragement means more to me than anyone could possibly know. Any strength that I've gained post-diagnosis comes from those who have shown me compassion despite the fact that I have done nothing to deserve it at all.

Jane said...

You do deserve it and you have done something--you've survived. That alone is worth applause. Take your pat on the back, woman. You didn't let cancer stop you from living.

ASH said...

Bint.....

I can understand the emotional rollercoaster that goes with not only the diagnosis but also the surgeries and such. My wife is dealing with cancer, she was diagnosed with it at 17 and it quickly spread from her thyroid to her lungs where it was finally "arrested". Fast forward to the middle of last year, when an ongoing hip pain that her doctor told her was arthritis suddenly became unbearable and turned out to be a new tumor on her pelvis. I have been strong for her and helped prop her up....some days no doubt better than others. Her strength through all this has been amazing, she has reserves I had no idea existed. The tumor is gone now....but things are much more "on edge" since, her health isn't what it used to be. I think this round took a lot out of her.

Thank you for sharing your story, you are an amazing person and I am glad I found you and your article.

Lee Herrick said...

bint, i clicked on a link to your blog (from slanttruth.com) because i liked the name, "my private casbah." i read this post twice, each time slowly and with admiration and awe. then i read some of the older posts, and i'm really inspired here.

of course you are a survivior and brave, but you also strike me as a kind (and cool) person as well. bravo to you. my good thoughts and prayers are with you.

p.s. i love spicy food (what korean doesn't?) so i'm going to have to make it to louisiana one of these years.

Bint Alshamsa said...

Wow! I didn't even know that the folks at Slanttruth had linked to my page. Yeah!! Thank you so much for coming and visiting my blog, Lee. I am going to go and return the favor today.

Bint Alshamsa said...

Hello Kilimanjaro,

Wow! You came back! Thank you so much! I really wanted you to read what I wrote. I don't think you really know how much your comments have made it easier for me to keep writing about this.

I can't wait to see what you have to say about this post!

Kilimanjaro: High and Lo said...

Bint,

Thank you sweet sis for sharing!! This is ALL TOO familiar for me and heavy at some points to read-you have no ideea. I'm so familiar with Percuset (which never really helped my mums much) and narcotics, esp, what they do for your appetite and how they exhaust the body. I [i] really [/i] love reading your thoughts, experiences, and how you see your physical reflection in the mirror. you write so well and candid....i know i've said this before but your blog makes me think about my mother. and im VERY lucky to be reading it from your perspective. i sat here for a moment after reading, centered myself, and wondered what it must be like to be your daughter. please PLEASE continue to share your story. I have more to learn--and that's truth!!! xoxox Kili.

Doug said...

Hi! I don't have a comment so much as a question. I recently came across your blog and would like to start at the beginning and read it all in order. Is there any way to do that? I've gone back through your previous posts, but I'm never sure exactly where I am or how to get to the next post in chronological order. Is there an archive with dates attached so that I can simply read forward? Thanks in advance! Doug

Bint Alshamsa said...

Hello Doug!

I'm really happy that you stumbled upon my blog and decided to read a bit. You can find my oldest posts by going to my the homepage of my blog:
http://bintalshamsa.blogspot.com

From there, find the column on the right where my profile picture sits. Keep going down that page until you reach the word "Archives". Directly below that you will see a list of months and years. To start at the beginning click on the link that reads "July 2005". If you don't see it, here is a direct link to it:
http://bintalshamsa.blogspot.com/2005_07_01_bintalshamsa_archive.html

All of the posts that I wrote in that month will show up. After that, you can look on the right hand column again and click on the link that says "August 2005". You can keep on doing the same thing all the way through "July 2006" where you'll reach the posts that I'm writing this month.

I hope this makes things clear but if it doesn't, then I'll give you direct links to each month's posts. I'm really thrilled whenever someone says they want to read what I write that I'm more than happy to help. By the way, please feel free to comment on anything you want. I love to hear differing opinions and other people's experiences too.

Thanks for making my day!

Mary said...

Bint, what a journey you've been on...congratulations on 30! what a great age to reach! before cancer i was not looking forward to 30. but now i see things a little differently. :-) 31 has been my best year yet.

it's interesting to read that you've lost your ability to be sentimental, thinking that everything/one will come to an end. thinking about that seems to make me more sentimental...every moment and person takes on many meanings, because i know they're fleeting and i want to experience them as fully as possible. but then i am not living WITH cancer right now, just with that possibility that many of us have afterward.

i started the ABC Survivors site for adult bone cancer survivors. if you ever feel up to submitting your story, you could use what you wrote here and add to it, or you could use the form on our site. or you could just join our discussion forum if you'd like to meet other patients and survivors. i saw that you are in a chondrosarcoma group already - that might be the yahoo one i'm involved in too.

anyway, it's awesome to peruse your site and see all of the living you're doing! you go!

much hope,
mary sorens