CancerGuide: Inspirational Patient Stories
I had been having bouts of extreme pain in my right side on and off for over a year. Sometimes the pain would be so bad that I would literally fall to the floor. Other times, when in class, I would have to slide way down in the seat and stretch my legs out straight, praying it would just subside enough for me to get down the notes I needed. I was 47, had already been diagnosed as having fibromyalgia, and kept thinking it was one of the 50 different ways that condition tries to interfere with living.
As a disabled vet, I only had to cross campus to see my primary healthcare provider at the local VA hospital. Again and again I went over to the Women's Clinic, reporting the pain that would come and go. Eventually, I was seen in the GYN Clinic and a uterine fibroid was diagnosed. During Thanksgiving break, I went in for what was to be ambulatory surgery, in and out the same day, and spent a week recovering from having my abdomen cut open to find the bleeder that almost took my life. At least the fibroid was gone, and with it one ovary that had been so laden with cysts they hung off it like Christmas tree ornaments. Slowly, I recovered. I'd had lots of cysts removed over the years (inside and on the surface of my body), and even had to have a radical subcutaneous mastectomy because of a severe fibrocystic condition in my breasts years earlier. I just figured this was another such case.
Unfortunately, the pain in my side continued coming back. I kept going over to the VA hospital, and had more than one doctor tell me that while they could understand my concern, my mother having died of ovarian cancer, they couldn't find anything wrong. Eventually meeting my goal of graduating with my B.A. before the end of the century (it only took me 30 years to get the thing!), I started looking for work, and tried not to dwell on this stupid pain. It didn't last long, it didn't bother me often, it just really bothered me a lot when it hit. "I could live with it," seemed to be what the doctors thought, and I guess I finally got worn down to thinking the same way.
Five months passed. At last I got a job on campus in my major, and excitedly looked forward to starting this new phase of my life. The week before I was to start working, my best friend flew out from California to Florida, and took me on a 4-day jaunt down to the Keys. We had such a relaxing time. On our way back to Tampa, stopped at a gas station in Naples, I went in to use the Ladies, and my urine was the color of red wine. I'd had a few bladder infections, and this wasn't like they had been.
I started the pills prescribed for a bladder infection, but wasn't feeling so good. I had none of the symptoms I'd come to associate with that condition: no pressure to urinate, no burning when urinating, no feeling of fullness in my abdomen. Instead, I felt more and more rundown, which didn't jive with the excitement I felt at work. Again, I thought maybe this was the fibromyalgia acting on the increased stress of having a job. I was learning that fibromyalgia flare-ups often are indicators of there being something wrong nearby. But I had been anemic before, and when the clinic called to say my urine test had come back negative for an infection, something pushed me to say I thought I was anemic, and needed more tests. Thank God for listening to that voice.
The next day I went in for tests that took up most of the day: lab work, a CT scan, an abdominal X-ray. The X-ray was last, and I noticed several people gathered around the film that was shortly taken down as I was told to report back to the clinic. My primary healthcare provider had been taking care of me for 3 1/2 years by then, and had seen me through many things, including a ruptured Achilles tendon. The staff in the clinic had my unflagging loyalty. Other doctors in other clinics had sometimes given me attitude when they couldn't find any medical cause of my complaints, but the women in the clinic had always listened and tried to get me taken care of. I don't think I could have gotten through the university without their care and support, so when Jane reached out to hold my hand before speaking, I knew the news wasn't good. I had already lost all my family, had been unable to have children because of being raped and injured as a child, and now I was in jeopardy of losing myself. I just knew it.
I tried to backpedal from imminent disaster by saying, "Okay, so this has just been much ado about nothing, right?" All the time knowing that my life was about to change. "I am so sorry, Dawn," Jane said. "You have gone through so much already, and you really don't need this. You were right, you are anemic. The reason you are is because of a tumor on your right kidney, and the doctors I've talked to have said that about 90% of these tumors are cancerous. You are going to have to have your kidney removed."
I sat there, feeling the skin on my body contract and start crawling, as though it wanted nothing more than to escape what was to come. I already called myself Frankenstein's Bride, and now I was going to have even more reason to wonder why any guy would ever want to hold me close, if I even lived long enough to find someone to care for. Jane showed me the picture from the X-ray where it looked as though my kidney was a baseball glove holding a ball. The tumor was the size of a large navel orange, and I couldn't wait to get it out of me.
The next week I met with the surgeon. He had taught at the University of Pittsburgh Medical School for 7 years, and reassured me he would be able to take this away. Good, I thought, cause I sure don't want it in me any longer than it has to be. Unfortunately, the surgery schedule was packed, and it would be a 6-week wait. My roommate was a leukemia survivor and a close friend, and it surprised me that oftentimes she seemed even more frightened of this disease than I was. I didn't realize then how this had her revisiting her own trial. Before hearing that I may have kidney cancer, I didn't even know there was such a thing. I needed to know more, and with six weeks to wait had plenty of time to find out all I could.
I didn't do as much work as I could have those weeks of waiting, but I did find Steve Dunn's CancerGuide, and that led me to the KIDNEY-ONC list, and there I found facts and hope. Any question my fear bubbled up in my brain, someone would have an answer for. I began to think that things would just possibly work out okay. This disease was a beast, but eventually, I would learn how to dance with it. Plenty of caregivers and others with RCC told me so.
When I woke up from the nephrectomy, I honestly thought someone had tried to cut me in two, and hadn't quite finished the job. I lay still for two days before I could get out of bed. In time, I got my surgical report and found out that I had lost not one, but two ribs. The bulge in my side would not go away with time and healing. I now had a curve in on one side, and a curve out on the other. My feminine vanity winced every time I looked in the mirror, but I was alive. I still had a pain in my side from the strong suturing needed to close the vena cava and aorta that had led into and out of my kidney. In time that pain faded. My surgeon told me at 6-months I could consider myself cured, and having stayed with the list, I knew enough by then to know that was simply not true. I could never consider myself cured, even if the RCC never metastasized. For the rest of my life, I would need to have tests, checking.
I wrote a five-paragraph concise letter to the man, telling what I had learned, what I needed, and disputing his claim of a cure. I began the 6-month cycle of tests which would continue for the next two years, and I have never had to meet with that particular doctor again.
One day a year and a half after my neph, I got a call at work from my VA caseworker over at the Federal building in St. Petersburg. An intern had been going through records, making sure everything was as it should be with them, and had noticed a discrepancy. Although I'd been rated at 60% disabled from the time of my discharge from the Navy eight years earlier, I had been paying a portion of my monthly disability back every month to what had been called severance pay when discharged, but was in fact an advance on future disability pay. Only those above 50% don't pay it back. In two days, $19,000 was being deposited into my checking account. I could get a car, I could pay off bills, I could go to Disney World!
At Christmas time, my roommate and I were finally feeling we could celebrate the holidays. She'd never been to Disney World, and we spent 3-nights at one of the Disney resorts, and had a wonderful time. This was only a few months after the tragedy of 9/11, and it seemed as though we had all of the parks to ourselves. What a treat! I sent a postcard of Mickey with the American flag to the White House, telling the president we had heard his message of how important it was for us citizens to go about our lives. He was right about that.
Two and a half months later, as I was spending a few weeks with my best friend, Valerie, in California with and her two kids, my godchildren, I got a call. My roommate had gotten off the bus on her way home from work, and had been struck and killed crossing the road. Again, my life was changing. How glad I was in the days and weeks to come that we had spent that time together in Orlando. I went home, and began the process of living completely alone.
I did pretty well during the time it took to close up the life of my friend. I packed up and sent off the things she'd wanted her daughter and grandkids to have. I contacted the Junior League of Women, Goodwill, and friends to give her things to those who could make use of them. I wrote her eulogy and held a memorial service. And then, I fell apart.
For the next year, I went to work and then got back into bed, not getting out until it was time to go back to work. I cried all the time. I couldn't stand going anywhere we'd been together, although I would try, but end up leaving in tears. Finally, I began taking RCIA (the Rite of Catholic Initiation for Adults) classes at the local Catholic Church. I started to live again, make new friends, and emerge from the shroud of grief that had been suffocating me. I joined the choir and became a cantor. I got a new job with an increase in pay. I rejoined the race.
I reached three years with No Evidence of Disease (NED), and finally was able to ask to see the results of the tests and break away from figuring if it was bad news they'd let me know. I learned I had numerous cysts in my liver, but was told when I asked, that is not uncommon. I've kept reading, and recently found out that for the sub-type of RCC I have, chromophobe, the liver is more likely to be the site it metastasizes to than with clear cell. I have my annual physical in a week, and will be bringing this information to my new primary healthcare giver. I will once again stand firm and ask that additional tests are added to those done once a year, checking to see that my liver is functioning well and true.
Like most of us diagnosed with this disease, I've asked "why me?" Maybe it was some genetic precursor; maybe it was being 50-80 pounds overweight for a few years; maybe it was all of the petrochemicals I handled as a jet mechanic in the Navy, all of which had warnings printed on the top of the containers that exposure to the skin could cause organ damage. Who knows? As of yet, no one. Eventually, I quit worrying about why, and began to focus on fighting back.
Whatever I have to do to keep the beast in check, I will do. It can't be trusted, and I know that. This life belongs to me, and no one or nothing is going to take it away from me without a fight. I still haven't found anyone to hold me close, but that doesn't mean I don't have people to care for or who care for me. Life is good. I have made friends I've never met on the KIDNEY-ONC list, but one day I'll get to a convention with KCA and will meet them, face to face, heart to heart, and give away hugs that will mean more to me than I have words to express.
If anyone reading this wants to get in touch, my e-mail address is email@example.com. Be of strong heart, and live!
This CancerGuide Page By Dawn Renee. © Dawn Renee
Page Created: January 23, 2004, Last Updated: January 23, 2004