Tears

The summer of 2009 marked 15 years since I was diagnosed with Hodgkin's disease. I believed at that point there were no major problems from the cancer. I have to take a thyroid medication, but that isn't all that uncommon, and I have a few scars from surgery.

I had had a bone spur removed from my right hip in 2007, but I thought that had more to do with a family history of arthritis. The problem was I never really recovered from that minor surgery. In fact, I seemed to get worse, and both hips began bothering me.

I limped along for two more years wondering what in the world was going on. I saw the chiropractor weekly. She was wonderful, but she was stumped as to why I was having so much trouble particularly with my muscles staying intensely tight all the time. My regular doctor gave my pain pills. And the orthopedic doctor prescribed physical therapy. None of this made me feel any better. By the time I finished teaching my first year of school, I had frequent episodes where my right leg would catch in searing pain and I couldn't move it forward or backward until the spasm passed. My ever- and over-protective mother suggested we go to the Mayo clinic in Jacksonville, Florida, for more testing since we had no real answers from any of the doctors we'd seen here. Being utterly opposed to seeing new doctors, it was a hard decision to make. However, I called and scheduled an appointment for the end of July.

The Mayo clinic is AWESOME. If you are ever in need of diagnosis or treatment, go there. After an initial appointment, the doctors quickly diagnosed my problem with three simple x-rays, which by the way, no one had done at home. I had to have both my hips replaced. Both hips were so deteriorated that one doctor suggested if I didn't have my hips replaced right away I could be in a wheelchair in less than a year. And worst of all (at least to me) the probable reason for the hip deterioration was a particular medicine I took during my chemotherapy. After 15 years, that stupid monster had crept back into my life.

I never truly knew what it meant to be hysterical. However, as I tried to fall asleep that night in the hotel, the thoughts of having diseased bones in my body, giant scars on both legs, cancer stealing my bones, fear of being sick, the unfairness of it all overwhelmed me. At first the tears slowly leaked from my eyes. Before long, the tears were streaming out full force. The sobs were coming so quickly I choked again and again. I couldn't get enough breath to form the screams I wanted to release from my body. I couldn't logically process anything. I just wanted to escape from it all, but there was no way to escape from my own broken body. I can't tell you how long this went on. I know it went on long enough for my mom to transform from sweet and comforting to a drill sergeant demanding that I get a hold of myself. Finally, I went to sleep. I woke up with sore muscles the next day, evidence of the stress I had put on my body.

As broken as I was that day, God took care of me. He moved things so that I was able to see the orthopedic surgeon a week later. Then He arranged things so that there was a cancellation that allowed me to have my first hip replacement by the end of August instead of mid-October. That made it possible for me to be recovered in time to take a teaching job at Elberta Middle School by October 1. Then He changed the schedule again so that I could have my other hip replacement May 24. This worked well because I missed the boring teacher work days at the end of school. And now I have two strong hips to move me forward.

Where I was broken, I am healed. With Thanksgiving less than a week away, I realize how thankful I am for all that has happened and the way it happened to bring me to the point I'm at now. Looking and walking forward without cancer and without pain.

Rambling Reflections

A few weeks ago I had a big break through when I was able to tell my cancer story to a lady who was worried about her son being diagnosed with Hodgin's disease. I'm very happy to report that he did not have any time of cancer, and that what he did have can be treated easily. I'm very relieved for her, and I'm still proud of myself for speaking up. I know it helped ease her mind as she awaited his diagnosis.

I've spoken at several Relay for Life events about my experience with cancer. I think I've said before that I was very guarded about what I said and that I didn't want to talk to anyone about it afterwards. I also hate walking in the cancer survivors lap. Declaring my survivorship is not something I'm good at. However, I believe there has to be something that I'm suppose to do with this.

I distinctly remember riding in the car with my parents after my diagnosis. We were driving on Fort Morgan Road, and we had been debating about whether I should stay out of school for a year to do treatment and finish a year later. I really couldn't even consider that option. I told my mom and dad that I was going to be an example. I was going to go to school and be drum major. People were going to look at me and know that cancer wasn't an end. I considered myself very strong back then. There wasn't anything I couldn't do.

To look back on that person who was so confident is scary. Somewhere along the way I lost that, and I miss that person. I still have faith in my abilities, but I don't have the faith that someone will notice them. I'm at a crossroads. I feel so strongly that having cancer meant something. I have to believe that it was a preparation for even greater things, but I'm not hearing the message of what those things are. Once upon a time I thought I could make a difference by working for the American Cancer Society. Although it was a fantastic experience, it wasn't the right fit. Even volunteering for the American Cancer Society didn't feel right. I just don't know. It is so hard to want to make a difference but feeling blinded about how. Any ideas???

Today's Big Victory

Today was a victorious day for me!

I went to a training in Loxley, and I was one of the first to arrive. I didn't know anyone else attending the training so I took a seat near the front of the room and hoped someone nice would sit next to me. Soon after a kind-looking lady sat down. We introduced ourselves and made small talk. During the course of our conversatoin she mentioned that she had to call a doctor about her son's blood work. Her 17-year-old son has enlarged lymph nodes in his abdomen, and he has been experiencing a lot of pain. I looked at her and asked if she thought it might be Hodgkin's disease. I brought it up all by myself!!! She said that was a major possibility. So I did it. I told her am a Hodgkin's survivor. She said something like, "you are normal." Then she said that God had brought us together to reassure her. I felt moved to comfort her so I proceeded to tell her how I was diagnosed when I was 17, completed my senior year in high school, and was even drum major in the band. I was honest about having to have my hips replaced because of chemo, but for the most part, I wanted to share how normal my post-cancer life has been. I tried to reassure her that even if her son has Hodgkin's that he can experience many normal teenage things and grow into a truly happy adult. I even gave her my number and told her to call me. Most importantly, I never felt afraid or embarrassed to say any of those things to her. It is the first time in my life that I have talked face-to-face with someone about cancer without feelings of shame and discomfort. This was a big day for me.

My new friend had not received her son's results by the time we left, but she promised to let me know. I hope whatever his condition is that it is easily treated. Regardless of what his diagnosis ultimately is, he helped me in my own battle with myself, and I'm thankful for that.

Shutting down the evil voices

Last Wednesday I started feeling an acute pain in my upper back. By Thursday the pain was so sharp I couldn't breathe deeply. Every logical cell in my brain screamed that it was just a misaligned rib that would be fine with a quick trip to the chiropractor. However, the illogical cells started a rumor in my head that it was breast cancer.

I know that due to the location of treatment during radiation in 1995 that I have an increased risk of developing breast cancer. This increase is not so tremendous that getting breast cancer is imminent; however, I have spent many years trying to shut down the little voice in my head that says, "It's coming. It's coming." When I was around 30, I was totally convinced I would develop breast cancer by age 48. Having an actual age in my head almost destroyed everything I enjoyed. I consider it a victory that I only have thoughts of it every once in awhile, and I'm usually very capable of shushing that voice quickly.

After all these years, I still get jumpy when something isn't right. When I was diagnosed with Hodgkin's disease, I did not feel sick so my body and I don't have a very trusting relationship. It failed to warn me once, and I don't want to risk it again. When I do feel sick, particularly sore throats, I tend to freak out more than most people. I hate having swollen glands because that's what I thought the tumor in my neck was.

At any rate, my fabulous chiropractor poked my rib back in place. The soreness is subsiding, and I feel confident I'm ok. I've once again defeated the evil voice in my head.

Boys

For as long as I can remember I had the idea in my head that I would not get married until my late 20s, and therefore I was never in a serious relationship. However when I was in my late 20s, I dated the nicest guy for quite awhile. He was really sweet and fun, and although some of my friends disagreed, I thought he was handsome. We usually had a great time together even if we did nothing. Our relationship was just easy. It was like hiding away from the pressures of the "real world." With all that said, I never really planned to marry him even if his mother was ready to start making plans after about a year.

We had been dating about 4 months when I had my yearly cancer check-up. Even though I had been cancer-free over 10 years, I had a habit of spending a week or two before the big day making decisions on what I would do if I found out I had cancer again. Needless to say, I was not pleasant to be around prior to the visits. It may be hard to imagine, but I hadn't told my boyfriend about having cancer, and I didn't tell him about my appointment. I distinctly remember sitting in the waiting room at South Baldwin Hospital all by myself. As I sat there worrying about what my blood test and x-rays would show, it became more and more apparent that it would never be fair to bring someone in on that kind of life. I distinctly remembering a real sense of sadness that it wouldn't be right to allow someone to love me when my life might be cut short. I've never forgotten the feeling that I have a duty to protect people from me. Although my results were fine and my doctor told me not to worry about anymore yearly exams until I was 40, I never told my boyfriend about having cancer or the decision I made to protect people from loving me. I also felt a little twinge of guilt for the rest of our relationship that I was hiding these things. I justified it all by thinking that his mom knew my aunt and he was a friend of my cousin so he probably knew anyway.

Telling someone I had cancer when I was a teenager doesn't easily work its way into a conversation so I never brought it up with any of the guys I dated. That little twinge of guilt of not telling was always there. However, I enjoyed dating and being normal so much that I didn't want to risk losing that by spilling the beans.

Finally it all came out last year with a guy. He was fun, smart, outgoing, handsome, just fantastic in general. We hadn't been on many dates when he asked me about the two scars I have on my neck and near my collarbone. I panicked. I didn't want to stop things before they got started by telling him about the surgeries during my cancer treatment. I don't remember if I totally ignored the question or said something stupid about a knife fight (my usual answer that shuts people up quick), but I know I never mentioned cancer.

A few months later I saw a TV show about relationships and one of the key topics was sharing uncomfortable things from your past. The show advised getting things out in the open early. I decided that I had to talk about having cancer with this guy. I did not feel comfortable bringing it up, but I was committed to being honest if he gave me an opening. He gave me that opening a few weeks later when he asked again about how I got my scars. I was mortified, but I told him I had cancer when I was a teenager. He seemed to take it well, and even mentioned that could be a possible reason for the leg problems I was having. (He was right. I had to have both my hips replaced within a year of that conversation due to the long-term effects of chemo). I felt somewhat relieved that I had the courage to say it and he didn't freak out.

He dumped me the next week. He gave some cop-out reason that left me with no satisfaction. But what made it really hard on me was that I had trusted him with my secret, and it hadn't mattered. I'm sure he had no idea what a big deal it was for me to tell him that I had cancer. I had given him no reason to understand this. However, I felt, and sometimes still feel, like he stole this from me. Even though I still talk to him occasionally and have gone to dinner with him a few times since then, a tiny part of me thinks of him as the jerk who stole my cancer.

I say all this because I am stopping this pattern now. I had cancer. It's a part of my history, and it contributed to making me the fabulous person I am today. Up until now, I have given it more importance in my life than it deserves. I have let that one year overshadow the almost 33 other years of excitement, achievements, and joy. I will never again hide my cancer from anyone who is lucky enough to date me. Cancer survivor is only a fraction of who I am, and I don't need to protect anyone from me because of it.

Is it a lie if you say nothing at all?

Last year at my school there was an incident where one student told another he had drugs to share with him. A third student overheard the conversation and told his teacher. The two students who were in on the drugs were sent to the office, counseled, and punished. The student who told on the classmates told me later that he told the teacher immediately. Then the boy asked me if I was proud of him. I looked at his face that was so desperately seeking my approval. I told him I was very proud of him, and I meant it. By all means, he did the right thing by speaking up. Although the "drugs" were some type of spice like oregano, this child was very brave to notify his teacher of a potentially dangerous situation.

For years I have not had the bravery of this young boy. I have kept the fact that I had cancer a secret to as many people as possible. In some situations it made no difference. There is no need for my name to become Margaret Jayne I Had Cancer Bemis. However, there are many other situations where it is more than appropriate to speak up.

Two years after I graduated from college, I landed a job as a Special Events Manager for the American Cancer Society. My job would entail managing four fundraising events where the money would go for research, education, advocacy, and services in the fight against cancer. In this job cancer survivors were revered. I, along with my co-workers, worked very hard to incorporate cancer survivors as volunteers. They were the best ambassadors in our fight. However, in the year I worked for ACS, I only told three of my co-workers that I had cancer, and I asked them not to mention it to anyone else. I told one because when I was hired I had to fill out a form that listed any possible medical issues, and she had to send the form to the division headquarters. The other two learned I had cancer at a division training. I don't remember the circumstances, but I remember the horrible feeling of having more people find out.

While not telling my co-workers that I was a cancer survivor doesn't bother me much, I am bothered by the fact that I never shared this with my volunteers. Many of them, especially those who were also survivors, deserved to know. Those who were battling cancer when while volunteering with me could have been strengthened by knowing that I had won the same battle. I had a volunteer who was fighting breast cancer. She was a young woman, probably in her 30s. She was so discouraged by losing her hair and having her skin break out. I had faced those same things and had come out better. I could have shared my story with her. By holding my secret so tightly, I stole from her piece of mind that things could get better. I should have done things better. I should have accepted this part of me and used it to benefit others.

I can't change that now. I can't even say the times I've spoken about my cancer experience when I was a volunteer made up for not being truthful with people. Even when I've spoke, I've very carefully chosen what I would say. I've never shared the feelings of fear or shame. I've flat out lied about having hope and courage. I believe surviving cancer can bring out the best and the worst of people. While fighting cancer brought out the best in me, surviving cancer has been a battle against the worst parts of my character. So I had cancer, and I survived it more or less intact. It is my sincere hope that most cancer survivors deal better with the aftermath than I have. Everyday I struggle not to be ashamed that my body failed itself, but I am working on overcoming that each day I write in the blog. Thank you for humoring me.

Goal #2 - Top 10 in my graduating class

Being drum major and graduating in the Top 10 were two goals that never left me all through high school. They are still two achievements that give me strengths all these years later. Making the Top 10 took four years of work and dedication. I faltered a little in Mr. Bauer's chemistry class. I just had no passion for the class, and I made a C one six weeks. I ended up with a B average, but that wasn't my style at all.

Being diagnosed with Hodgkin's disease and undergoing chemo from the beginning of my senior year until the end of February didn't help my academics much. I didn't miss many whole days of school, but I did miss a lot of classes. I had Advanced Concepts math (aka Calculus) first period, and that class, although I really enjoyed it, was the one I missed the most. Some mornings, especially toward the end of my treatments, I just couldn't get going.

Mrs. Ratcliff was my Calculus teacher. I have had many teachers I would count as favorites - Mrs. DiChiara, Mrs. Wiist, Mrs. Gilmore, Ms. Lindsey - but Mrs. Ratcliff remains the most special. She took such good care of me my senior year. When I got home from Baptist Hospital, she came to see me. She brought a banner, probably 6-7 feet long, with well wishes from all my classmates. That banner decorated my bedroom for the rest of the year and even hung in my dorm at Troy State University. Many times I was invited to her house to catch up on school work and to shoot a little pool. She even attempted to video tape her class when I was unable to be there. That didn't work out so well because my family's video recorder wasn't the best, but she was willing to do whatever it took to keep me on track. However, the most important thing is something she didn't do; she never cut me a break because I was sick.

My other classes were relatively easy for me to keep up with because they required mostly reading, writing, researching, and memorizing. I had to put a lot more effort into Calculus. By January and February of that year, I was very weakened. On top of that, I kept getting sore throats and would have to have shots to boost my immune system. I couldn't have chemo while I was sick or taking the shots so it was taking longer that expected to complete my last chemo treatments. I was physically and mentally depleted. I was missing more classes during this time, especially Calculus. It was getting harder for me to keep up.

Remember how I said Mrs. Ratcliff never cut me a break because I was sick? Well, the proof came at the end of that winter's six weeks. I had earned and she placed on my report card a D!!!! I had only made one C in my life, and that was bad enough for me! The fact that my favorite teacher gave me a D was almost unbelievable to me. On top of that, it was a 68. In my professional opinion that should have been close enough to bump up to a 70/C, but she didn't. I wasn't mad, but I was horrified. I still had my hopes pinned on going to college the following fall, and that was going to have to be through an academic scholarship. Mrs. Ratcliff's advice was to work hard and bring up the semester average. I finally finished chemo at the end of February, and I started eight weeks of radiation. That wasn't near as draining on me as the chemo. I wasn't missing school, and I was working hard. For the next two six weeks, I received "A"s on my report card. My semester average was a high B. Good enough after the whole D incident.

The D didn't derail me. I graduated #8 in my class and won a full scholarship to Troy State. I also won several thousand additional dollars in private scholarships based on academics and my tale of fighting cancer while fully participating in school. And of course, I still loved Mrs. Ratcliff.