My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Tuesday, January 30, 2007

New Identity

It finally sunk in and I assumed the identity of a cancer patient. It was kind of hard to deny after I'd read my chart, watched the reactions of all of those around me, visited an oncology office, opened and read all of the cards, and had seen my name listed on church bulletins as one of the afflicted. I knew now it was real, no mistake had been made.

I started to do research on my disease. I knew it was very rare. I spent hours and hours looking for medical information on the internet. I finally found and read all of the horrible statistics and predictions related to my diagnosis. I was a nurse. If I'd read all of that on behalf of a patient, I'd have assumed the patient was a goner. It was emotionally devastating. I tried to contemplate not being here to raise my kids, to contemplate not spending my old age with my husband. The bottom had truly fallen out of my life. I was afraid now to even contemplate a future. I'd always said that I could die anytime in a car accident, but this was different. Before when I'd said that, it was an intellectual reality. Now it was an emotional reality as well. It was like comparing the intellectual reality of potentially dying in a car wreck to being in a speeding car with the accelerator jammed, anticipating impact while watching the world fly by outside of my window.

It's funny now, but at the time I found myself suddenly unable to purchase clothing or any durable goods for myself. I was always frugal, and it seemed, based on the medical literature I was reading, that I might not live long enough to wear out the shoes I contemplated buying. I was suddenly a bad investment.

Monday, January 15, 2007

Life as a Cancer Patient

When I left the hospital after my appendectomy, I began my life as a cancer patient. I wasn't ready yet to use the term survivor, though I'd been told everyone alive with a cancer diagnosis was now termed a survivor. To me, a survivor was someone who was still alive 5 years later, or who had at least completed treatment. I had a long way to go.

I remember several things about my transition to life as a cancer patient. I remember waking up mornings and for an instant my morning would be normal. Then, once I was more fully awake, I remembered that my world had changed, it wasn't a normal morning. "Normal" was gone, I had cancer.

I remember feeling so out of place in an oncology office at first, I felt I didn't belong there. I looked around the oncology office waiting room and saw people who had lost their hair, who were very thin, who looked ill. Was I one of them? I felt a mistake must have been made. I felt great, I felt healthy. I wanted to leave and go back to my normal life. But normal was gone.

I remember hardest part; seeing the pain my diagnosis caused my husband, my kids, my parents, my best friend, my sisters, my in-laws. And I couldn't make it better, I couldn't change it. My best friend summed it up best. She called me one day and said she just wanted to hear the dishwasher run. She said she wanted our normal back. She wanted our lives to be the way they were before I had a cancer diagnosis. She said she had been home contemplating my diagnosis and had heard the dishwasher run, and for a minute she felt everything was normal again, everything was the way it was supposed to be. She'd stood and just listened to the dishwasher and remembered normal.

Normal. I mourned the loss of the normal life I had taken for granted. Life had changed so rapidly and so unexpectedly. Would life ever be normal again?

Tuesday, January 9, 2007

Terminal?

The day after I learned I had cancer I woke up remembering the strange conversation I’d had with my husband about my surgery. Still unreal, I had cancer. I didn’t know if it was a particularly bad cancer to have. They’d removed my appendix, was it gone? Maybe it was already over and I wasn’t even a cancer patient anymore.

I was asked to choose an oncologist, which I did. The oncologist’s partner, who was on call, came in to order tests. He ordered a CT scan of the chest, abdomen and pelvis to see if the cancer had spread anywhere else, along with blood tests for tumor markers. He told me that if the cancer had gone to my liver, they wouldn’t be able to offer me any treatment. I would be considered terminally ill in that case. He was definitely an up-front guy. Tell the patient the truth. As a nurse I’d always been an advocate of telling the patient the truth. Now I was the patient.

I talked to my mom on the phone, she knew about the cancer diagnosis. I asked her not to tell anyone else. I wasn’t ready to tell anyone except my best friend. I needed to think about it, to let it sink in, to get used to the idea. Then my eldest sister called me. I told her about the ruptured appendix and that I'd had an appendectomy. She talked about how lucky I was, how blessed I was to have survived a ruptured appendix. She seemed confused that I didn’t sound more grateful. Then I blurt it out. The reason my appendix had ruptured was that it was cancerous. I had appendix cancer. Silence on the other end of the phone. Oh…

Now I told everyone. The secret was out, the phone started ringing, everyone was on the internet.

Friday, January 5, 2007

Day One as a Cancer Patient

I think back sometimes to when this all started, my life with cancer. The first thing I remember is waking in an anesthesia-induced fog in the recovery room. My surgeon was at the foot of my bed telling me that my fibroids weren’t that bad after all, so he’d not done the hysterectomy, but that my appendix had ruptured. In my groggy post-anesthesia state, that explained the NG tube in my nose and the symptoms I’d been having, but not his blank expression. They’d removed the appendix, I was alive and could be given antibiotics, it was a happy ending to a surprise situation. He was a doctor and colleague who always had sparkling eyes and a joyful expression. But as he talked to me, his facial expression was blank, the sparkle in his eyes was gone, his voice a monotone. The brief conversation and the look on his face are now forever frozen in my memory. And it’s funny, but the memory as I visualize it now is in black and white, not color. Grey.

Later in my hospital room, I noticed that all of the nurses and staff were very polite, but also that they were in and out of my room in a hurry, and they didn’t make eye contact. I noticed it, as I had noticed my surgeon’s facial expression, but I didn’t think much of it. They were just busy and very professional, my surgeon had been tired. I decided I was really one of their least sick patients, I’d only had a laparoscopic appendectomy. They had many other patients who required more care and who were sicker. They really didn’t have time to stop and chat, they were busy. Too busy to look at me.

The next day I learned the truth. My husband sat on the side of the bed next to me the day after my surgery. He is a registered nurse also, a surgical nurse. When my ruptured appendix was discovered, he’d scrubbed in and assisted with my surgery as I’d had complications related to the prolonged rupture. They'd needed more nursing staff to assist. Now he sat next to me, crying. I’d never seen him cry before. I remember his words, ”When they got into your abdomen, it looked really bad, you were a mess inside. They found out you have cancer, a very rare cancer. You have appendix cancer”. At the time I felt outside of myself. I felt so sorry for my husband, I wanted to tell him it was okay. I felt so badly for him having to tell me that I had cancer, what an awful job. He must have asked to be the one to tell me. But really, I felt fine. I felt great. How could I have cancer? It seemed so strange. Cancer patients were very sick people, I wasn’t sick. I was ready to go back home to my normal life. The only thing that separated my before-cancer life from my life as a cancer patient were those three words “You have cancer”. I didn’t know much about the cancer, only that I’d never heard of a cancerous appendix. Appendix cancer?

I’ve since communicated with others newly diagnosed who felt the same. Shouldn’t they feel sick? They felt fine, they didn’t feel like a cancer patient…could it really be true? It was strange, I felt I was supposed to suddenly assume a role that didn’t belong to me, the identity of a cancer patient. It was unreal.

Unreal.

Monday, January 1, 2007

Another New Year, Another New Blog

It was recently suggested to me that I add a blog to my website, that I personalize my site a bit. My daughter created an anonymous blog, an on-line journal, over a year ago. At the time the concept seemed appalling to me. I'm from the day when journals were called diaries. We wrote down our thoughts in small books that we locked with keys and hid under our beds. We wanted no one to have access to our innermost thoughts and feelings. The concept of publishing those thoughts to an international billboard, even anonymously, was beyond my comprehension.

I've since been thinking about a Christian author I admire, though. What I admire most about him is his honesty, his willingness to share with the world thoughts that most would keep hidden. Philip Yancy wrote that the topics of his books are the issues of faith that he struggles with. He seeks answers to questions we all have but are afraid to verbalize, "Where is God When it Hurts?", "Prayer, Does it Make any Difference?", "Disappointment with God:Three Questions No One Asks Aloud". In writing his books he is searching for answers himself, and in reading his books I feel grateful for being allowed to safely tag along on a road he is bold enough to travel.

In communicating with many cancer patients since my own diagnosis, I've found we all share struggles that we don't always talk about with friends and family. We find that after cancer treatment is completed, we are unable to go back to our "normal" lives, the normal we knew is forever gone. We have unanswered questions that resound in our heads, we have feelings and thoughts we are sometimes afraid to express. Part of surviving cancer, though, is finding those answers and coming to terms with what we think and feel. Surviving is also the reconstruction of our lives, the reconstruction of our hearts and minds and souls. It is the recreation of a new "normal".

In this blog I will recount my own ongoing attempt at reconstructing my life along with the challenges I've faced and continue to face as I try to make sense of my life after cancer. I promise to be as honest as I know how to be. I will ask the questions out loud. I will express the thoughts and feelings I've had as a cancer survivor. I'd love for you to tag along.