My name is Lea Marek and I was diagnosed with bladder cancer on January 29th, 2001. I was 33 years old. Over the past couple of years I had frequent bladder infections. I am a paraplegic, due to Spina Bifida, so the doctors weren’t too concerned. They would prescribe me some antibiotics and send me on my way.
On New Years Eve, 2000, I got very ill. This time, I knew it was related to my bladder or kidneys, but it was worse than any pain that I had felt in the past. I called my regular doc that night and they called me in some meds for me to take, but over the next I did not improve. Soon, I was running a fever that would not go away. I finally got a referral to go see a urologist, named Dr. Sutton. This guy seemed concerned from the beginning and he said that he would do whatever it took to get to the bottom of all these infections. He ran test after test on me and then 3 weeks later, he found the tumors in my bladder.
The biopsy said that I had invasive bladder cancer. Actually, for some strange reason, I wasn’t really shocked. I had a terrible gut feeling that something was very wrong. I was just so grateful that Dr. Sutton did not ignore what I was telling him and he followed through.
He gave me the options and we decided that I wanted the bladder removed immediately. The tumors had blocked my right kidney and this is what caused me so much pain. Dr. Sutton planned to remove my bladder and give me a hysterectomy on February 19th, 2001. At that time he planned to put in an internal pouch that I would have to catherize through an opening in my navel. Unfortunately, when he got in there, he discovered that the cancer had spread to two of my lymph nodes, so he would not be able to create the internal pouch, because I would now have to have chemo and he didn’t want me to have an internal pouch that could end up causing more problems. For the time being he created an ileal conduit which is an opening in my stomach that attaches to a bag that I wear. It was not the best of solutions but it was the best option at this point.
I was in the hospital for eight days. It was a difficult surgery, but having been born with a disability, I was used to surgeries. This was about my 15th operation. Over the course of my life I have spent at least 2-3 years of my life in hospitals, so what’s one more go round huh?
Three weeks after surgery, I went back to work full-time. The external pouch has taken some getting used to, but it is fine for right now. Dr. Sutton does not want to give me the internal pouch until I have been cancer free for a couple of years.
In April 2001 I started chemo and did not finish until September. Chemo consisted of two drugs, Gemzar and Cisplatin and I had this regimen every week for half a day. I encountered the usual problems with chemo, nausea, hair loss, low blood counts and general tiredness and weakness. It was definitely one of the hardest things that I have ever had to go through in my life.
There, now that is all the technical stuff. For those of you who are newly diagnosed, I have some advice. Take it for what its worth.
1. Find a good doctor and I don’t necessarily mean the most skilled or educated, although that is important, but there is nothing as important as having a doctor that treats you like a person and not a number on a chart. A doctor that actually cares about you and is actually pulling for you is better than gold. I had one doc, the first oncologist, that had years of experience and skill, but he did not believe that I could or would survive and he told me so. He took away my hope, only for a short time, but I will never again allow a doctor to do that to me.
2. Find a good support system. Whether it be online or a group in your community. I am so fortunate to have the people at the Bladder Cancer Webcafe. They have been such a blessing. My family has been wonderful of course, but the folks that I have met that are going through this same thing have been the best resource. I have also been extremely blessed with such super co-workers and other friends who have taken care of me every step along the way.
3. Remember that you are not a statistic.
4. Take time for yourself and understand that you may deal with this differently than anyone else. Do things that make you happy.
5. Understand that cancer is not a reflection you as a person. It does not mean that you did something wrong. Cancer happens to persons from all walks of life.
You can write to me anytime you like at leamarek@ivillage.com or you can view my personal website at leascancerjournal.com
January 29, 2002
One Year Later
A year ago today, I was diagnosed with cancer. At the time, I asked why me? I had been born with a disability and struggle had been a part of my life. Why was this happening to me? I felt that I had learned some pretty significant lessons in my life, what more could there be? I soon found out, however, that there was plenty that I hadn’t learned yet, many things that I had, in fact, taken for granted. A friend of mine, Linda, asked me if cancer had changed me. You bet it has, in more ways than I could of ever dreamed of. It is one thing to know intellectually that you might not be here next week, or next year, it is quite another to have that reality staring you directly in the face. It then becomes a reality of its own that some people try to run from and others choose to embrace. I have chosen to embrace that reality, and it has profoundly changed my life. The things that I feared a year ago, I no longer fear. I have seen things differently as if I had never seen them before. I have met people this year who are facing the same battles as me, and they have humbled and amazed me.
I have also come to realize over the past year just exactly how blessed I have been. My friends have given me so much of themselves. They have cried with me, laughed with me, loved me unconditionally, and given me strength to face not just the next day, but at times, the very next hour. However, above all else, they have given me their time.
For a person with cancer, time takes on a whole new meaning. I have had wonderful friends who have taken time out of their day to visit me in the hospital, call me on the phone to see how I am doing, or to send me an email to brighten my day.
Friends who have driven me to my chemo treatments and held my hand when the pain was more than I could take, friends who brought me specific things to eat because my stomach couldnt tolerate most foods, and friends who donated their own personal time off so that I didnt have to lose pay from work while I was sick, That was time off that they worked hard for so they could use it for their own vacations and time with their families, and instead, they gave it to me.
Friends who gave me their entire day by staying with me at home because I was too sick to care for myself. Friends who have overlooked the fact that I was sleeping at my desk, and without complaint, filled in and performed my job duties while they gave me time to rest and catch my breath. Doctors who have given me more than medicine, skill and knowledge, they have given me hope that I can indeed survive. They have taken time out of their busy day to share a laugh or two with me and more importantly, they have treated me as a person rather than a number on a chart.
I don’t know what is in store for me but I do know this, I will never look at life or the people in my life the same way. One of my favorite songs has always been Amazing Grace and in that song is a verse that says: Through many dangers, toils and snares I have already come. Tis grace hath brought me safe thus far and tis grace will lead me home.
No matter what tomorrow brings, I have been Blessed. Amen.