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, February 23, 2010

Sunshine!

I will be gone for the next week, we are leaving early Friday morning...away from winter, out of the country, in the Eastern Carribean. I will be enjoying sunshine and green and warm breezes with my husband of 22 years. It will be a kind of second honeymoon for us...the last time we took a trip with only the two of us was our honey-moon! There are some good things about being empty-nesters!

I am not a fan of winter, and by February I've had enough of snow and cold and gloom. In my perspective, the only good thing about winter is that it so makes me appreciate spring. Maybe I'd take for granted sunshine and warmth and growing things if I lived in a more temperate climate?

I was in San Diego for awhile one April. They have an average year-round temperature of 70 degrees. While I was there, the natives complained loudly about a day that was 50 degrees (SO cold!) and another day of 80 degrees (SO hot!). I live where the yearly temperature varies from below zero to 90 degrees, so couldn't relate. I felt they were spoiled!

So for the next week I'll be without internet access and cell phones. And though I love the ability the internet has allowed me to connect with other rare cancer patients, I will be glad to be away from electronic communication. I've read, and I agree with, the statement that while we are more connected (electronically) than ever before, we are also lonelier than ever before. Since the electronic age, I've come to truly value real time communication, complete with body language and vocal intonation. I tried Facebook, but it wasn't for me. I in the end deactivated my account. I guess it's just not my way of relating to people.

So I will be enjoying "real" time with my husband over the next week, and am sure I will have lots of emails to answer when I get back...and I will!

BTW, I've learned some of my email replies go to folk's "junk" mail folder...so be sure to check your "junk" mail...I also have several legit emails that end up in my junk mail, so always check it. Not sure how that works in this electronic age....

Monday, February 22, 2010

I lost another friend.....

I lost yet another friend to appendix cancer today. My closest appendix cancer friend.

She found my website just after she was diagnosed, and we have been in touch often in the years since. She was my age, and also a nurse...so we shared a lot right away. She, at age 50, defied the odds of being female and being older and was accepted into medical school. She'd always wanted to be a doctor. She was doing well in medical school...until she had appendicitis, until she discovered she had appendiceal cancer. She had a hemicolectomy and then returned to med school, she was going to be one of the survivors. Then her cancer recurred. She had a second surgery, and as a result of that surgery the nerve to her right leg was damaged. She became disabled. But she still returned to med school. To her dream.

Her cancer then recurred again, this time inoperable. She decided to forgo chemotherapy and to instead use alternative therapies. They didn't work for her. We communicated once, sometimes twice a day as her life deteriorated. She was dying and I knew that. I hated that she wouldn't be my friend forever in this life. I hated that she would never realize her dream of becoming an MD. I hated that cancer was stealing another friend from me.

She suffered unending pain and nausea and disability in the end. Her quality of life deteriorated to the point that she wished the relief of death, even if it separated her from those she loved. She finally admitted herself to the hospital for palliative care. She died just days later. While I was so sad to lose her, I'm relieved that she is finally cancer-free.

But in the end, she still advocated my dream of further education. She said initially I supported her when she was in school, and she wasn't able to finish, but maybe there was a justice in her encouraging me to pursue my dream of further education...at least one of us might graduate! We were always each others cheerleaders. We shared a lot...our dealing with a cancer diagnosis, our loves, our lives, our feelings.

Why couldn't she have been a survivor like me? Why couldn't she have realized her dream of becoming an MD? She only wanted to help people.

I have no answers.

I got to say goodbye to her before she passed. I told her how much I would miss her friendship. I asked her to try to contact me from the great beyond when she gets there...she said she's always been a bird lover (me too) so will try to contact me as a pink finch. I have a bird feeder and get a few finches, but NONE of them are pink. I will so be looking for a pink finch. If I see a pink finch, I'll know my good friend is just a parallel universe away from me.

I will be sure to keep my bird feeders filled this year. Especially with finch food.

Guest Post # 2: Mom's reponse to son's scholarship essay

I think I am so much more emotionally sensitive than my son has ever been. The essay he wrote for this scholarship and for a college application struck me as very thoughtful in its almost winding perusal of our ancestors and their experiences as compared to what we face today in our own lives.

My son is my only child, and I still do not know if he is truly worried about my prognosis. He holds so much in and for the most part, we are opposites many ways. I do not hold in my emotions on a daily basis, but Will seems to do this, funny thing is though, he may not even FEEL the level of emotionality that I do. This essay he wrote over a year after my diagnosis; told me for the first time, that he was concerned about perhaps losing me to cancer sometime soon. I have not told him the gory details of how aggressive the signet ring call cancer is known to be, but is it really aggressive for every patient? I don t think anyone knows. I love him so much, I will assume it is NOT aggressive in my case.

For now, I will be satisfied if my CT scan from 2 days ago tells us nothing is growing large enough to be seen, and to get him on his way to college- on his adventure to further his survivor genes, much as our ancestors did. I hope and pray with all my being to see him graduate, and have more of our descendants this will be what keeps me going and surviving too.

Lisa Laws, age 51, Apex NC

Wednesday, February 17, 2010

Guest Post: Scholarship Essay from the Son of a Survivor

By William Laws

When my family tells me about my predecessors and how they first arrived in America, it makes me wonder how they made it through the circumstances they chose. Today’s problems of pandemics, wars, and financial strife seem very manageable when one thinks of the problems that the first settlers of “The New World” faced.

From what I know about my ancestors, I am a mix of French and German settlers to New England on my father’s side. I think I can imagine how cold their lives must have been. Sickness was a common occurrence, and effective medicine was hard to come by. Yet these people withstood what everyone can assume to be very bad times, and the majority of this side of my family has not moved more than two hundred miles from where they entered the United States. I wonder if it was because they struggled, and had no choice but to stay.

On the southern end of the thirteen colonies, my mother’s English, Scottish, and Irish forebears are known to have come into Norfolk, Virginia and Wilmington, North Carolina. In fact, my mother tells me that the William Laws name was first seen in the ships’ logs of coastal Virginia during the 1600’s. While we do not have written records of the direct connection, we know the Laws name traveled to North Carolina very early on. There is a major interstate winding through Virginia numbered 81- that used to be called “The Great Road” over ten generations ago. My maternal German Protestant ancestors traveled in a wagon on that rutted road to Washington County, Virginia in 1789. Their descendants are still there today. Their strength to withstand disease, harsh winters, and other miseries in the rustic Blue Ridge Mountains of the 1790’s proves to me that I come from a long line of survivors.

All of my predecessors’ struggles were to better their own circumstances and their descendants’. I have benefited from their struggles. My life is not perfect, but for the most part, I am a very fortunate person. Although my parents haven’t lived together since I was an infant, I don’t feel disadvantaged because of it. Both of my parents have stable jobs and homes, and both of them love me very much. But last February, my mother received some shocking news that would change our lives forever.

I turned around and shut the front door. It was a rainy Wednesday night, and my father had just dropped me off at my mom’s house after my weekly scheduled visitation with him. When I saw my mother and stepfather sitting down in the living room, I could immediately sense that something was wrong. My mom’s mascara was a little smeared; it was obvious that she had cried a little while ago, but she had calmed down by the time I arrived. Ed, my stepdad, was sitting on the couch in apparent shock. It looked like they had been motionless for a while, just waiting for me to come through the door.

“Honey, sit down,” said Mom weakly. At this point, I started to scan my memory for things I had done wrong lately. I couldn’t think of anything, but that didn’t comfort me. “I have some bad news,” my mom continued after I sat down. “When I went to the doctor today…”

“Oh yeah, how’d that go?” I interjected nervously.

“Well, it’s hard to say,” stammered Mom. “But the doctor thinks that I have cancer.”

I was silent for a while after that; I realized why Ed hadn’t said anything since I had come home.

I finally mustered, “Where, what kind?”

“They haven’t found the main cancer site yet,” she responded. “But from the tests, it looks like I have stage IV cancer. But we’ve decided about some treatments, so there’s a good chance…” she trailed off, as if not wanting to say, “that I’ll live.”

I didn’t know what to say; I simply nodded, gave her a hug, and trudged upstairs to my room.

Thoughts were swirling through my head. How could my mother have cancer? She wasn’t even 50 years old yet. Even though cancer runs in my mom’s side of the family, we were all shocked when we found out it had hit my mother. She was the most health-conscious person in our family; she doesn’t smoke, and only drinks some wine or champagne once in a while. She was always the one telling me and my stepbrother to “eat our leafy greens”, since they have vitamins in them that prevent diseases. But even though my mom practiced a fit lifestyle, she contracted cancer. And it was probably just because both of her parents smoked.

That taught me a lot about fairness in life; someone can have a horrible circumstance occur in their life even if they do everything within their power to avoid it. One does not always control their own destiny; some things are just out of your own hands.

The next 15 months were a real struggle for our whole family. My mom, who was in the middle of graduate school, suddenly had to start chemotherapy. The effects of chemotherapy were draining. Many days she barely got out of bed, unable to gather enough energy to go downstairs. But she still managed to continue her work for graduate school online, something that amazes me to this day.

I gained a lot of respect for my mom while she was fighting cancer, and realized how much different life would be without her. I wouldn’t be able to live without her; she is such a big part of my life and I wouldn’t have accomplished a lot of the things I have done without her encouragement.

The ordeal also brought my stepdad, my stepbrother, and I closer together. Since Mom didn’t have the energy to help around the house most of the time, we had to increase our workload. We worked together to keep our home presentable, which can be hard for a few guys to do.

Thankfully, my mom has had several scans that are free of cancer since this spring, and is back working full-time. She went to Washington D.C. this past May to receive her Masters degree in Clinical Research Administration from George Washington University.

My mom’s fight against cancer taught me to be thankful for the people around me, especially my family. There is nothing more important to me than the well-being of my family. My ancestors probably felt the same way- but in most cases all they could do was hope for the best, and likely lose a family member. In current times, society enjoys more advantages that many people do not appreciate; but our ordeal has taught me to appreciate modern medicine. Even though we did not realize it that February night, our battle against cancer would end up bringing our family closer together instead of tearing it apart.

Tuesday, February 16, 2010

Logo vote results

My favorite, the butterfly, was the overwhelming victor in the logo vote! I think those of us with cancer see the butterfly as symbolic of transformation, hope and eternity. One of the voters sent me this that I really liked:

Butterfly: metamorphosis and transformation. Scientific research has shown that the butterfly is the only living being capable of changing entirely its genetic structure during the process of transformation: the caterpillar's DNA is totally different from the butterfly's. Thus, it is the symbol of total transformation. Butterfly represents a need for change and greater freedom, and at the same time it represents courage: one requires courage to carry out the changes necessary in the process of growth.

So the butterfly it is!

Also, tomorrow or Thursday I will publish a guest post, the essay of a 17 year old whose mother was diagnosed with an abdominal cancer like ours at Stage IV. The essay is one written as part of his application process for a college scholarship, it is the James “Rhio” O’Connor Memorial Scholarship Essay contest. It is required that his essay be posted on a blog, and they asked that it be posted on my blog...I am honored. His mother will also post a response to his essay. Be sure to watch for it!

Thanks again for voting! And BTW, I filed my grad school application today...I'm both excited and nervous! Wish me luck!

And as a final addendum, I try to respond withing 24 hours to every email I receive from a cancer patient, friend, or family member of a cancer patient. I recently became aware that a patient never received my reply to her email. That bothered me a lot. So if you write me and don't hear back, please let me know!! Write me again! I will never not answer!

Thursday, February 11, 2010

I need your input...please vote!

I mentioned before that I had founded a non-profit organization. It is the Appendix Cancer Connection. It was a stretch for me to do that, totally out of my realm of experience and expertise. But I decided that was the right thing to do. I feel for those with breast cancer, but sometimes get jealous of all of the support they have, all of the funds raised to find a cure for their cancer. We with appendix cancer need a voice and support too!

I had to learn a lot to do that. I took a business course to learn about devolping a non-profit and writing business plans. I had to learn how to legally form a corporation (you have to be a corporation to apply for 501 (c)3 to be recognized as a public charity). I hired an attorney to help me with the Federal 501(c)3 application...which has been approved, our organization is now recognized as a charity by the Federal govenment! I needed a board of directors, and I recruited 5 people to be on the organization's board. We have board meetings now complete with agendas and minutes. I am looking for a web site designer and recently went to a grant writing workshop. I now communicate with my Secretary of State. Yet another brave new world.

My goal is for all of us with appendix cancer to have a voice, to have support, to have information available, to increase public awareness of our struggle and to raise funds for research that will one day result in a cure for this cancer. The money required for founding this organization has been contributed by my late mother, my mother-in-law, my brother-in-law and husband and I. All people who believe in my mission.

I recently hired a company (The Logo Company)to design a logo for our non-profit. They will also do business cards and stationary for the organization at a very reasonable price. They have sent me logo designs to choose from, and I want you to be a part of choosing a logo...this organization is not mine, it is for all patients and family members struggling with this disease. It is OUR organization. A logo will haelp people recognize and remember us.

I am asking for your opinion on three of the logo designs. I have a favorite, but I want to know YOUR favorite. Please look at the 3 links to these designs and tell me which you like best. Email me your preference at carolyn@appendix-cancer.com. And thanks in advance for your help! We are in this together!

Logo designs:

Butterfly

Friends

Sunshine

Monday, February 8, 2010

Both Sides Now

I've recently been in contact with a woman who's very good friend was diagnosed with advanced appendix cancer, she's not sure if all of the cancer was removed during her surgery, and she was not able to receive HIPEC at the time of her surgery. She wants her friend to be proactive, to be eager to start chemo, to have an "I will beat this" attitude. She doesn't want her friend to "give up". But her friend has not been passionate about pursuing medical treatment or starting chemo. Why, she wonders? Why isn't her friend waging an all-out battle against her cancer? Why isn't she more aggressive in beginning chemotherapy? Why isn't beating cancer her priority?

In my heart, as a survivor of a terminal diagnosis, I can relate to her friend. I don't know what prognosis she was given. Maybe she is weighing the pros and cons of pursuing treatment. Maybe she's overwhelmed right now and needing to regroup. When I was diagnosed, every one sent me stories of those who had survived terminal diagnoses, who "beat" cancer, who won. They KNEW I would beat it; I just had to stay positive and fight. They didn't allow me any thoughts that I might not survive, though I was in the cancer community and surrounded by a multitude of patients who lost their battles in spite of the war they waged. While I wanted to fight and give myself the best odds, at the same time I also contemplated my husband's and children's future in case I didn't survive.

I knew my odds (15% chance of surviving 3 years), and though I planned on fighting and wanted to fight, I had to look at both sides. I needed to prepare to fight, but I also needed to prepare to die in case I lost my battle. The odds were against my "beating it", and I knew that. I had to work on coming to terms with both potential realities, surviving and succumbing....but no one wanted to know my thoughts about contemplating my own demise and preparing for that too. No one wanted to know about all of the books I read about death and dying, they weren't "positive". I had to pursue that in secret, but it was a potential reality important for me to contemplate and come to terms with. I needed to be ready for either outcome, surviving or not. Being prepared for either gave me a sense of control.

I know many appendix cancer patients who have been told further medical treatment will extend their lives but not cure them. So some choose not to aggressively pursue chemo and medical treatment...they prefer having less time, but quality time. It's a decision that needs to be respected. Those surrounding them don't understand that "giving up" mentality; I understand it fully, though. They were not "giving up" so much as they are giving to themselves what matters to them in the time they have left, taking control over what life they have left to live.

We live in a country and an era that pursues youth and wellness and longevity. We deny death vehemently; we don't think about it or talk about it. But death is a reality all of us will face eventually, though most in our society choose to not contemplate that promised destiny. A cancer diagnosis makes us confront our own mortality, though, and in many cases inspires us to create a back-up plan in case we don't have a good cancer outcome. We have to look at both sides of the coin. In a world where quantity matters and rules, we sometimes look for quality instead. It gives us peace to be prepared for whatever the future holds for us.