Monday, June 28, 2010

Virginia Lee: Five Questions for a Cancer Survivor

South of Eden

Photo: Patty Carreras

Tennessee writer Virginia Lee opens up on Memphis, Dolly, and surviving cancer, in one of the most amazing responses to five "simple" questions. The lady needs no more introduction.

1.) What's the Best Thing About Living in Memphis?

The best things for me are being in close proximity to my family history, the Mississippi River and the culture. Memphis is never boring. It’s a city of extremes in many ways, but also one filled with vibrancy and promise if you approach it with the right attitude. If I must choose one aspect of Memphis that always thrills me and makes me happy? I’d have to go with the cultural and artistic diversity. Memphis is far more than Blues, Elvis and the assassination of the Rev. Dr. Martin Luther King, Jr. For example, there’s been a professional theater here for forty years, Playhouse on the Square. There are actors, designers and technicians working all over the world who’ve been affiliated with POTS at some point in their careers. Even the late, great Michael Jeter did Godspell there back in the day. That still makes me all kinds of happy.

2.) What does the Bible mean to you?

I consider the Bible a construct of man. It’s a great work of literature and has many valid morality tales. However, because it is a construct of man, I do not look at it as anything other than an important literary and philosophical text. This will shock many people because my late father was an Episcopal priest by trade, and pretty good at it too. Alas, to my perception, my dad’s hypocritical behavior and that of the Diocese of North Carolina when my mother and I were seeking help during my bout with uterine cancer when we lost everything, has pretty much destroyed any confidence I had in organized religion. I am, without question, a person of Faith who believes in a Higher Power, but letting a book, any book, be in charge of my belief system is illogical. It’s particularly illogical when one looks at such in an objective manner. The major religions of the world follow and teach the same basic tenets. To my mind, the flavor of religion isn’t as important as Faith and Compassion for your fellow humans.

3.) What Could Barack Obama learn from the residents of Memphis?

We need help. If you don’t live out East there’s virtually no healthcare unless you are a child. The grocery stores available nearest low-income residents are inadequately stocked with healthful, affordable foods of decent quality. There’s a lot of rage and despair among the economically disenfranchised, and it’s been at crisis level for years. Those who’ve been poor all their lives have little or no hope of getting out of that economic trap. Those who are newly poor live in terror of never regaining what they lost due to unemployment or, as in the case of my elderly mother and myself, ill health. Mr. Obama is the man I voted for, as did many of my voting neighbors, but thus far my faith in his ability to actually do anything for the poor, the aged, those drowning in school loans that they cannot pay back because there are no jobs, the unemployed, the arts and so on, is pretty well gone. He needs to be Franklin D. Roosevelt and create real work programs for real people. We are that desperate. Even those who are managing to keep their heads above water are terrified most of the time. One thing that would make a huge difference for the economy and many individuals would be to forgive student loans for people with loans more than five years old. Another thing would be to make the process for getting help in emergency medical situations easier. My mother and I lost everything we owned because she became ill and then I did. In this state of no income tax the help is even more minimal than elsewhere.

4.) Is Dolly Parton good or bad for Tennessee?

Miss Dolly is awesome for Tennessee! In fact, she’s great for this country and everywhere. The woman is a genius. She has created an unforgettable, unmistakable character in her uber-country, bosomy, tacky persona. It’s a character that dates back to the beginnings of theater (and originally depicted by men, of course), but brought into our current era and culture. Minnie Pearl was not dissimilar in some ways, but Miss Dolly? Beyond that persona is her great skill as a songwriter. The woman is prolific! Even if she isn’t the greatest singer in the world, and she’s the first one to tell you that, her songwriting is amazing. I have the utmost regard for her as a songwriter, and really, she’s not a bad actor either. She’s limited in her roles because of her country accent and physicality, but she has the mind and instincts of a good actor. Given the proper role, script and director, I think she could astonish people.

5.) What type of cancer did/do you have and how are you coping with it?

I had uterine cancer. As to coping? Well, that’s entailed.

Menstrual cycles for me were never regular, and in my late teens I had my first bout of extreme bleeding. I was sure I was dying, but my fears were pooh-poohed. The pattern of extreme bleeding continued for decades. It waned a bit when I lost weight in my late 20s, but that didn’t last long and by the time I was 30 it was in full force again. My normal would have laid many women flat out and pretty much every man I’ve ever known too. What I’ve learned in the years since the cancer diagnosis, however, is that my normal is far more common and untreated than I ever imagined.

My mother had a health crisis that nearly killed her in the summer of 2000. I left graduate school to care for her full-time and was grateful I was free to make that choice. By the time I got her well enough to be safe to leave at home on her own so I could work, and I had a job waiting for me at a government agency here in Memphis (we were living in Mississippi at the time), I had begun a bout of extreme bleeding that did not stop.

Because of this bleeding and the hours’ long commute, I realized it would be unreasonable to take that job. I would need at least three changes of clothing every day to ensure I would be properly clad in unsoiled clothes. I was getting weaker and more anemic by the day and thus was not a terribly safe driver.

The logical thing would have been for me to have gotten medical treatment, but I had no money, no insurance, and if I’m being brutally honest, I was still blaming myself for having been raped years before. My low self-esteem was exacerbated by the psychological ramifications of the near constant bleeding and hormones in play. I felt I was being deservedly punished for past sins, which I know now was ridiculous, but at the time that was what I believed.

Finally, in March of 2003, I collapsed in the parking lot of my mother’s doctor’s office. All at once I was surrounded by medical personnel and they got me into a wheelchair and into the clinic. They tested my blood, and my hematocrit level was 12. Normal is over 30 for menstruating women. I was told that I was in danger of dying at any moment, and they sent me to the hospital in an ambulance.

I was in the hospital for less than 48 hours. During that time I went through several uncomfortable medical procedures and was pretty well traumatized. They kicked me to the curb when my hematocrit levels hit 19.

The aftercare I had was crappy at best, but I stuck to the same doctor until November 2005. She refused to get me another endometrial biopsy because I had no money. She told me to get Medicaid and left me with the impression that it was easy to do, and so I went through that months-long process only to be refused because they did not believe I was eligible for SSI. In Mississippi, I was told that the Medicaid people are literally not allowed to speak to you if you have not been approved for SSI first.
In a panic, we tried to get my uncle to help us get back to Memphis, where I had a better shot of getting care, but he flatly refused. He did offer to buy us plane tickets to NC so my siblings could help us. Then he dithered, hemmed, and hawed, and after I sent an exasperated note to my friend B., B. came through and bought us plane tickets and I knew I had a chance to get help once back in NC.

In a nutshell, we gave up everything we owned to go to NC. The day we left Mississippi we left my elderly cats at the shelter because my uncle was late coming to get us and so we missed the appointment I’d made with a vet to have them put to sleep with us there. I still have nightmares about leaving those kitties to an unknown fate and I don’t know if I’ll ever forgive my uncle for being such a recalcitrant asshole that day.

The bleeding I experienced was not just heavy menstrual bleeding. Besides a constant flow of blood, I had huge clots spewing out of me. It was a Stephen King nightmare. There were times when I got to the bathroom and the mere action of sitting on the toilet would send clots as big as my fist shooting across the floor. It was horrific.

Unfortunately, there are thousands upon thousands women experiencing what I did every day in this country. I’ve been astonished how many women have told me that they or their sister or best friend or co-worker are having or had similar experiences to mine. It’s terrifying, really.

So, I sent a note to relatives, my siblings, begging for help. The result of my letter was one from my siblings, saying we were not welcome or wanted and that if we dared show up at any of their doors that they would have us forcibly removed by the authorities.

At that point, I’d been bleeding heavily for five or more years, my mother was non-ambulatory and chronically ill, I’d just murdered/abandoned my kitties, and we’d already left everything we owned behind and were homeless. We had nowhere to go in NC and we had no idea what was wrong with me.

We got on that plane anyhow. Upon arriving at RDU, we immediately went to the emergency room at Rex Hospital where I was told my hematocrits were 17. They had likely been that or lower for several years by that point.I was immediately given whole blood, and after hormones to stop the bleeding didn’t work and 8 units later of red cells, my blood levels were deemed okay for surgery. A lovely cardiologist was brought in to check my heart to see if I could withstand the radical hysterectomy I needed, and after the all clear from him, I was operated on less than 48 hours after my arrival in North Carolina.

The surgery was very traumatic for my doctors, and then I didn’t want to wake up in the recovery room. Once they finally got me awake, my kind, older male doctor, told me they’d found an 8.5 cm tumor in my uterus and that cancer was 2/3 or more through the uterine wall, but somehow did not seem to have penetrated it. As a precaution, after getting advice from a gynecological oncologist at Duke, they’d removed every female internal organ I had. The man telling me this actually had tears in his eyes. He and my lady doctor were quietly furious over what had happened to me here in Memphis and they were determined to make sure I had care.

After having been in the hospital a week, I was booted because, of course, I had no money or insurance. It was then I found out that if I were an immigrant, illegal even, that I could have had emergency Medicaid. But because I was a born US citizen, I would have to jump through hoops and such to get any help. I was over that, of course, after what I went through in Mississippi, and later on, after I jumped through those hoops, I was rejected for help because, essentially, my college education meant that I was more than capable of taking care of myself and the cancer had been removed and so I was shit out of luck.

We were homeless again after my release from the hospital. The medical staff, however, couldn’t release me unless I had a place to go. I found a motel in Durham, where they’d arranged for me to undergo radiation at Duke, that was in an area with which I was somewhat familiar and that had special rates for Duke patients. The staff at the hospital took up a collection and we had enough cash to pay for five nights. My friend, B., contributed some and we had some money of our own come in and my uncle even helped some.

We stayed at the creepy motel for six weeks. The night we arrived I fell, busting open my incision, and I ended up going by ambulance to the ER @ Duke, which was very traumatic and painful. I was terrified as I’d never had major surgery before and had no idea if my guts were going to come spilling out or not. I was in the ER for thirteen hours (appx.) and the next morning I got back to the motel where my mother was hungry and thirsty and a bit freaked out.

We found a place to live in federally subsidized housing for the elderly in downtown Durham. It was rife with roaches. The walls were not connected to the floors or ceilings. Spiders descended from the beamed rafters. The noise was incessant and terrible and I was freaking out all the time because I’d become hyper-sensitive to noise during my illness, something I later found out is not uncommon.

I began experiencing instant chemical menopause while my incision finished healing and the symptoms were brutal. The menopausal symptoms were temporarily interrupted while I underwent 25 pelvic radiation treatments at Duke.

There’s more, much more, but this gives you an idea of what I went through.

--Virginia Lee

No comments:

Post a Comment