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.

Monday, December 28, 2009

Clarification

I probably need to clarify some of my thoughts related to my last post. I really don't believe cancer is "mind over matter". I don't think positive thoughts and doing everything right promises a cancer cure or good outcomes...I am all too aware of those who have a positive and strong "I'm going to beat this" attitude, who don't beat cancer. I know of people who have been healthy eaters, athletes, who do yoga, who have faith and who have been diagnosed with and who succumb to cancer. I know of many who pursue very healthy lifestyles after a cancer diagnosis, to no avail. Cancer is sometimes bigger than all of our resources.

I also know that based on new research that there are some who have a genetic predisposition to violent reactions to chemo. Going into chemo treatment with a positive attitude won't over-ride their predisposition to have violent reactions to the drugs. And many suffer surgical complications they have no control over. Many have more extensive surgeries than I did, so have a more prolonged recovery than mine.

I guess I was just thinking of patients I have seen over the years as a nurse, with and without cancer, who decide ahead of time that therapy will be difficult, recovery prolonged, who anticipate negative reactions to every new drug they are given, to every new treatment. And their beliefs are often realized. I see many who assume prior to surgery that they will feel badly for a long time after, and they do. And some who assume they will have a prolonged recovery from surgery do so in part because they assume an invalid mentality post-op. They assume they need to stay in bed feeling badly, and the staying in bed promotes a prolonged recovery as they heal more slowly when they decide to not move. And there are some who experience "anticipatory" nausea and vomiting prior to chemo....they actually feel nauseated and vomit prior to chemo treatments, as they have convinced themselves it is inevitable.

I had chemo every Tuesday, and had chemo with the same group of patients week after week. No one in my group had negative responses to chemo. Many went out to eat or went out shopping after chemo treatments. We laughed and talked and had fun during our hours of chemo. Those who had difficulties with chemo were in the minority.

I've seen many patients over the years who have done well after major surgery, because they were proactive and decided to do everything they could to recover rapidly. I've also seen many who recovered slowly and who had many complications related to the fact that they assumed they were supposed to feel badly and so acted accordingly.

One of the biggest things cancer takes from us is our sense of control. And we cannot control that we were diagnosed with cancer, we cannot control our final outcome of the diagnosis. But we can have some control, even still.

I feel expectations, at least in regards to therapy often do often influence outcomes (though a good attitude doesn't guarantee a good outcome). We have a chance to be in control, at least in some ways, of how we respond to therapy. We can be victims, or we can work to assume the best outcomes. We can decide not to assume bad reactions to chemo, but to go into it open-minded. We can decide pre-op that we will walk and move and do everything we can to enhance our recovery, even if it is painful. Part, but not all of it, is a mindset. A sense of determination, a willingness to fight that can only help us. It may not guarantee good outcomes, but it surely can't hurt.

Saturday, December 26, 2009

Outcomes and Expectations

While I don't believe "thinking positive" is vital to a good cancer outcome, I do believe that negative assumptions affect cancer treatment outcomes.

I know of many who assume prior to cancer therapy that their normal lives will be over while on chemo...they will feel ill, be nauseated, will vomit often, not be able to eat and will be fatigued while on chemo. And bald.

Many also assume their recovery from surgery will be extensive, they will be out of commission for months following surgical intervention. They assume they will have side effects from radiation therapy.

I wonder sometimes if those assumptions become a self-fulfilling prophecy?

I personally had a very major cancer surgery. Prior to surgery I was told I would be in ICU post-op and would be hospitalized for at least 12 days. But I didn't go to ICU post-op as I did well after surgery. I was discharged in 6 days, not 12. I walked 3 miles 8 days after my surgery. I was driving my car in 2 weeks and back to my normal life in three weeks.

I started chemotherapy with no pre-conceived notions of my life being altered, and it wasn't. I was nauseated only once during my 7 months of chemotherapy, ate well, gained weight and never vomited. I didn't lose my hair. I drove myself to and from chemo treatments and ran errands on my way home from chemo. I did athletic training while on chemo. Six months after I completed chemo I rode my bicycle 100 miles in one day (I trained for that event while on chemo). I lived a normal life...the few chemo side effects I had were cured with medication once I brought them to the attention of my oncologist. I felt a bit washed out on chemo days, but hey, I'd had days where I felt a bit washed out prior to chemo. They've come a long way with chemo, nowadays drugs are given prior to chemo treatments to prevent side-effects.

I had a friend with my same cancer who was in her 70s. She was also discharged from the hospital following her extensive surgery in a week. She was soon after surgery kayaking and hiking and doing the things she loved. My 79 year old aunt is experiencing a breast cancer recurrence, but is living a normal and full life while on chemo, following 39 uneventful radiation treatments.

I know of others who after the same surgery I had spend months recovering. Who don't resume their lives and interests for the better part of a year.

And I wonder sometimes if expectations play a part in outcomes. If we expect to be ill and disabled, maybe we will be. If we expect prolonged recovery, maybe it will become our reality. It's not so much that we need to think positive when we enter cancer treatment, maybe it's more that we go into it open-minded? Maybe our attitude in part determines whether we will be victims or victors?

Thursday, December 24, 2009

Acknowledging the Negative

I am a great fan of another cancer survivor's blog, The Pastor's Cancer Diary". It is written (well written!) by Rev. Carl Wilton, a man living in a "slow motion crisis". He has a documented lymphoma recurrence that it just there, being constantly monitored, but for now not getting any better or worse. He's in a prolonged period of watchful waiting. Living fully with the uncertainty cancer brings to our lives.

He recently did a great post I recommend you read, The Glad Game.

This is an excerpt from his post:

"We cancer survivors hear a lot about the importance of maintaining a positive attitude. In many ways, that advice is but a warmed-over version of Pollyanna’s Glad Game. The problem is, no real person can be as relentless in playing the game as the fictional Pollyanna. Feelings of sadness and dejection sometimes present themselves, and that’s OK. They come with the territory.

If we take the “think positive” advice too seriously, we can end up denying the existence of those negative thoughts – which are only natural, after all. Sure, maintaining a positive attitude is important, but that doesn’t mean we can never give ourselves permission to feel anger, or sadness, or frustration or any of the other negative emotions that come from this kind of protracted struggle."


He also in his post quoted a hero of mine, Dr. Jimmie Holland (who I got to have lunch with once!!). She is a psychiatrist who has written books about the emotional aspect of cancer survivorship and who deals with the normal emotions cancer patients feel. She founded the science of psycho-oncology.

I've struggled a lot with the sentiment that we with a cancer diagnosis are always expected to "think positive". I've wondered sometimes why those who experience great physical trauma, heart attacks etc. are not held to the same expectation to "think positive" as we with cancer are. I loved that my mom, when she was hospitalized and paralyzed and disabled was able to tell me how depressed she was. I told her she had every right to feel depressed; life had dealt her a terrible blow, she had lost a lot. In her life at the time, depression was justified. It was a normal reaction to her circumstance.

But people don't say that to cancer patients. Somehow for us "staying positive" is supposed to help us beat our disease. We aren't allowed to feel depressed or frustrated or discouraged at the negative changes cancer has brought into our lives. We are supposed to deny those normal negative feelings. But denying feelings is always bad, I think. We need to be able to feel what we feel. To be honest. We can't move forward until we process those negative feelings; the grief, the hurt, the fear.

We need to be allowed to be who we are, to feel what we feel. To have support when we can't always be "positive". A cancer diagnosis deals us a terrible blow, in so many ways. Yes, we feel negative emotions.

We can't be positive until we process the negative. We need to be able to feel all that we feel. We need to be able to feel hurt and pain and anger before we can move beyond to the "positive". Negative feeling are normal and justified. We can't be "positive" until we process the negative.

Sunday, December 20, 2009

Control

I saw my oncologist for my annual visit this week (and I know how lucky I am only to be seeing an oncologist yearly now...I remember my very frequent oncology visits for many years).

I have a kind of fun story about my oncologist...the oncologist I saw for the first 7 years retired and moved to California. I liked her a lot. Being a nurse and knowing physicians in the community, I've always chosen my own doctors, and they are always the best. The oncology practice called me after my oncologist retired and told me they had chosen a new oncologist for me. I took offense to that, I told them I always choose my own physicians, I'd do some research and choose my new oncologist, thank you. The office staff told me the oncologist they'd chosen for me was a new one, they really liked him, and asked me to just give him a chance. I reluctantly said okay, I'd see him once.

Well, I fell in love with him immediately (in the medical sense)! We truly hit it off and the first time I saw him we talked for an hour and a half about new cancer research studies, integrative medicine, cancer genomics...all before he got around to examining me. I had been reading a book about integrative medicine that had just been published, he had been reading the same book. When I told him initially I had been evaluated by a surgical oncologist at a university hospital in Chicago who'd told me I had no hope and was untreatable, he immediately knew who the physician was before I'd said the name, and had had issues with that surgeon in the past. I left the office smiling and accepting the "I told you so's" from the staff after that first visit.

We again had a lot to talk about this latest visit. He is hoping to revamp the large oncology practice to make it more integrative. To have massage therapy, nutritionists, acupuncture therapy, exercise programs and a new building with a garden and a less clinical atmosphere available to patients. I think that is a wonderful dream. He said when that happens he wants me to be part of it, I would truly love that.

We got to talking about the emotional needs of cancer patients. We both talked about the depression we see in cancer patients after they finish therapy and are in cancer's "waiting room" without the chemo/radiation safety net. I had talked about the fact that in my experience in the cancer community everyone wants support from other cancer patients, but no one wants to join support groups. They have a bad reputation, no one wants to be around those who are "weak" and struggling. We talked about the need for there to be empowering support groups. In the past he had one called "Strategies for Success" that focused on maintaining optimum physical and emotional health, focusing on things one could do to help control cancer and prevent recurrence, ways to gain and maintain a sense of control after cancer. I think that is the kind of support we really need.

I think regaining control over our lives is crucial. I see so many cancer patients who pursue drastic dietary changes (only raw fruits and vegetables), who grab at anything that might give them a sense of control over cancer...meditation, visualization, vitamins and herbals, psychoanalysis to discover unresolved hurts that might have cause their cancer etc. etc. I tried some of that initially (visualization and meditation) but never stuck with it. I didn't change my diet (I still do McDonald's and fast food sometimes and don't eat enough fresh fruits and vegetables), but always wondered if I should. I think I, like all cancer patients, wanted to feel like I was still fighting, that I had some way to control my future and my outcome, that I still had tools. I wanted to feel empowered again. I wanted to own my life and my future again.

It would be great for cancer patients to be part of a program that promoted education into tried and true methods to reduce chances of cancer recurrence, that gave cancer patients a sense of control, that made them feel proactive once they completed treatment.

Sunday, December 13, 2009

Updates

For those of you interested, I was asked to blog weekly for Everyday Health, I've been doing that for a couple of months now, the link is Against All Odds: Thoughts of an Appendix Cancer Survivor . So if your eyes aren't worn out reading this blog, I now have two! I was honored in that they featured one of my blog posts in their Woman's Health Newsletter delivered to a million people last week. I love to write, so it has been fun to be asked to write more!

I have recently been talking to my mom-in-law about my mother's death, we have always talked a lot, we are usually on the phone for at least an hour every time we talk. We mutually agreed several years ago to drop the "in-law" designation, she's my mom and I'm her daughter. We've been pretty close for 22 years now. She is probably the most giving person I know. She was very open in talking with my kids about sex and drugs and alcohol as they became teens, she was also their caretaker when I was hospitalized for my cytoreduction surgery and for all of the trips I made before and after to NYC. My kids have always thought she was very "cool" for a grandma, they can talk to her about boyfriends and just about anything. She had all of her grandkids over to her house for sleepovers several times when they were younger, she played games with them and made pizzas with them until the wee hours of the morning. When her brother died and she received an inheritance from him, she spent it all taking her kids and grandkids to Disney World...I missed the trip as I was receiving peritoneal chemo and had just had my surgery several weeks before. I didn't want to miss any chemo then. She is in her 70s but still loves amusement parks, still goes on all of the rides. She regularly drives the Chicago expressways I'm afraid to travel.

She sent me a card sympathy card that I really liked, along with a heartfelt note. A part of it I really liked said "If a tiny baby could think, it would be afraid of birth. To leave the only world it had known would seem a kind of death. But immediately after birth the child would find itself in loving arms and cared for every moment. Surely the baby would say "I was foolish to doubt God's plan for me. This is a beautiful life".

I'd heard that sentiment before, but I loved really thinking about it now, especially since death and the dying are a big part of my world, both as a nurse and member of the cancer community, and especially since my mom has passed. We went to her memorial service yesterday. If we were born into this life so much different and better than a dark womb, imagine what heaven must be like in comparison! I love thinking of my mother's birth into that world!

I read a sci-fi book long ago. In it a space ship sent several expeditions with multiple people on board to a planet they had wanted to explore. No ship ever returned, it was thought all aboard the ships had perished. It turned out, though, that all of the passengers had made it to the planet. The planet was beautiful, with awesome colors they had never seen before, beautiful landscapes and everything they had ever needed or wanted. All who went to that planet had loved it so much they had chosen never to return. I've always thought of that story when I lose a patient. Maybe where we go after death is a place like that, a place we never want to leave.

Monday, December 7, 2009

Transitions

I think there are various transition periods in all of our lives. I think the first is in grade school, third grade (okay, maybe preschool if our kids go there). Suddenly education gets serious and you have to learn more complex math and cursive writing...it's not all about puppy stories during library time and arts and crafts and learning the alphabet anymore. My youngest had a tough transition during third grade, she wanted to quit school then and I talked her out of it. She did finally graduate from high school!

Then there's the transition to junior high school and the freshman year in high school. I think sophomore year is another transition period...my kids wanted to be more independent and their own people separate from me then. They didn't want me to always chaperon school events anymore or to have all of the social activities with their friends only at my house. They needed to establish themselves separate from me and from our family, they needed to be their own people. I understood that and told them I would never chaperon school or social activities again unless they specifically asked me to (I didn't get asked often after sophomore year). Prior to that I point I had been involved in all of their school and social activities. They spent more time at friend's houses and more overnights away from home without my intervention and presence. They needed to experience other family dynamics than our own.

Then of course there is the transition to college life and semi-independence, life away from parents with decisions they are accountable for and responsible for without parental input...a normal part of growing to be independent adults.

Then, for those that marry, there is the transition to independent married life. And later, maybe, the transition to raising children and being a parent.

But even after all of that, there are still transitions. Even without and in spite of a cancer diagnosis (which is a major life transition of it's own), there are new transitions.

I am at a point of transition now...and I know I am lucky to have survived cancer long enough to have experienced this current transition.

This year has been a year of changes for me. My kids are both away at school, so I am officially an empty-nester...lots of pros as well as cons in that situation. I also turned 50 recently, so am dealing with the fact that I don't have an unlimited number of years let to explore endless possibilities. I have an expiration date, even without cancer looming in my life at the moment. I also lost my mom and officially became an orphan, a normal transition for most of us at the middle age part of our life.

I think many of us at middle-age experience these multiple transitions. Mine have been within a matter of months, maybe for others the transition is more spread out. Unfortunately hours at my very lucrative job recently dried up too, so for the moment I am unemployed and doing a job search. I guess that was good in that it allowed me to be able to visit my mom downstate during two of her recent hospitalizations and to be home with my kids for Thanksgiving break and now to have finished the Christmas shopping.

In some ways I am kind of depressed right now with all of the changes life has recently presented me, but in another way, I am very hopeful and expectant. Transitions in life always herald a new beginning, a revelation, a new start. Transitions herald growth.

I don't know where I will go from here, but I am hopeful. Expectant. A new beginning is waiting, and I am ready to dive into that new beginning.

Life wouldn't be life, wouldn't be growth, if it weren't for the transitions.

Thursday, December 3, 2009

Home

My mom passed a few days ago, and I was grateful for that. I didn't have a need to travel to be at her bedside as she passed, probably because if I was in that state I personally would wait to leave until I was secure in the fact that my kids were in their own homes with the people who loved and supported them before I would be able to let go. Most of the dying I and other health care workers have been around have waited to leave until family members went home to change clothes or get a few hours of sleep. They'd already said their goodbyes and said what they needed to say. The dying person used their time alone to finally make peace with their lives here and to leave without traumatizing anyone. I will ask my kids to do the same if I am ever in that state. I don't want them to ever do a "death vigil" for me.

For me I will need to be alone with my God when I finally let go. And in reality, we all come into this world and leave alone, those are personal journeys we make. We can only make them alone.

I am very close to my mother-in-law, and when she was critically ill and when we were not sure she would survive, we took turns visiting her during the day. We made sure one of us children were there each day when she was hospitalized, but we went home at night. She told me she felt she was sitting in God's lap, that she never felt alone or afraid. That made me feel so good. So reassured. What can be better than sitting in God's lap? Being with the all-powerful was better for her than her being with us.

I felt I said what I needed to say to my mom when she was hospitalized the last time. I said goodbye and told her I loved her when she was awake and could see me. I had things I would have liked to have asked her then, to have bridged the gap in what we had (and hadn't) communicated to that point, but we didn't, we didn't have that alone time. But I think we will in Heaven. We were kind of distant in this lifetime, but I think we will be close in Heaven. I will know her better there. We will be the confidants in Heaven that we weren't in this lifetime, I think.

And I feel I communicated with her from a distance when she was in her "in between" state. I feel that geographical boundaries don't apply at that time. I played for her "In the Arms of the Angels" on my piano, though she's never heard me play the piano. I learned to play long after I left my childhood home at age age 17. We communicated more from a distance than I think than I would have communicated with her in person when she was in that dying state. To me that meant more than being physically present at her deathbed.

I have no regrets.

Saturday, November 28, 2009

More Waiting

In the spirit of "Waiting Room", my family and I have been in one lately. My mom had a stroke a few weeks ago, followed by several more strokes which left her very disabled. She was hospitalized twice. She yesterday had another massive stroke and is in the hospital again. She is not conscious or expected to survive.

I traveled to see her the last two times she was hospitalized recently. I knew she was at very high risk for more strokes, and I knew the last time I saw her during her second recent hospitalization that it was probably the last time I would see her alive...so I made sure to tell her I loved her and goodbye then.

I feel sad for what she has suffered, that she had become disabled and
intermittently confused related to her stokes. She had also become very depressed as a result of her recent traumas, and I know personally that the emotional struggles are the worst part of any physical illness. But as she is in the last waiting room of her life, I really do not grieve for her, or for myself. I am sure some would see me as callous. But I know when she leaves this world she will finally be at her real home, and will be whole and happy and will have many to greet her. She will never hurt or struggle again. I would rather see her there than enduring months, maybe years, rehabilitating from her stokes in a nursing home, away from the home she loved and the things she loved to do. I will miss her, but only for awhile, it's a temporary separation.

Being in the cancer community for so long, I have seen very many lose their battles. Many who were young and still raising children, many who had careers they loved and goals they wanted to achieve in the remaining decades they thought they would have. I was recently in contact with a family who lost their 23 year old son to a cancer similar to ours. I've communicated with a 19 year old appendix cancer patient. I worked once with a family who had lost two children both in their early twenties to two different types of cancer, brain cancer and lymphoma over just a two year period. A five year old at our church died of brain cancer in spite of overwhelming prayer support.

I had trouble dealing with all of that for a long time, so read many books about heaven and the life after this one. I also worked for a hospice as a volunteer for many month in trying to come to terms with it. I talked to many patients about their feelings about their impending death. Their fears, their hopes, their struggles. Patients who were relieved to finally have someone they could talk to about their impending death.

As a nurse, I've held the hands of many who were actively dying as they have passed from this life into the next, some who I think waited for family members to leave as they didn't want to put their loved ones through the trauma of witnessing their death. I've let patients who were barely living know that they had permission to leave, to move on to their next life, to stop suffering and lingering in the dying state...that it was okay, they could go home. I've also asked families to give their dying loved ones that permission. I've supported families who have chosen withhold food and hydration that would only prolong death and not life in a person who was at the end of their journey. So I am very familiar with end-of-life issues.

Once when I was waiting in the "CT scan waiting room" wondering if I had an impending death sentence, I met a woman, now 70, who in her 20s had a near death experience when she was very ill. She told me in detail about the heaven she went to during that experience. She said when she woke up in a hospital room later, she cried for three days because she so wanted to go back, she preferred the heaven she had experienced to living in this world, even though she was a young mother with small children then. Now at 70 she still longs to go back; she's been waiting for decades, but decided she must have work to do here, that she has been in this life's waiting room and not where she feels she really belongs for a reason. She told me not to be nervous, I had nothing to fear even if my CT results were not good.

In the end I developed a profound belief in heaven. A surety that life doesn't end here, that this life is only a short and temporary one in comparison to the eternity we will one day live in. Death isn't an end, it is a transition. It's a transition all of us will one day make. I personally, though I believe in heaven and a life after this one, still fear the unknown of that transition. But I now think it will be like many other transitions in my life that I was fearful of that turned out in the end to be enlightening and empowering. Transitions I'm so glad I made.

Interesting thing,the five year old in my church who died of brain cancer....he'd become physically but not mentally disabled. When he was in a wheelchair, he one day told his mom "Look over there, Tyler is back!!". Tyler was a dog they had put to sleep six months earlier. He then had a very animated conversation with someone no one else could see, and he smiled during that conversation. Shortly after he lost consciousness; he died a few days later. His transition. Many in hospice had similar experiences, many saw people they knew coming to take them home near the end.

For those who are at the crossroad of this transition, I can recommend several of the books I've read during my sojourn:

In Light of Eternity, by Randy Alcorn
Crossing the Threshold of Eternity: What the Dying Can Teach the Living, by Robert Wise
Heaven...Your Real Home, by Joanie Erickson Tada (who has been unable to move her arms or legs for four decades after a swimming accident as a teenager)
On Life After Death, by Elizabeth Kubler-Ross (who spent decades working with those who were dying)
Heaven and the Afterlife by James Garlow
The Shack, by William Young
When There is No Miracle, by Robert Wise

Monday, November 16, 2009

The Waiting Room

At church yesterday the sermon topic was "the waiting room" and how difficult it is for us to wait, and how often God doesn't answer our prayers and requests as quickly as we would like. Or how sometimes he doesn't seem to be answering them at all. How sometimes, as in Abraham and Sarah's story, we lose patience and take things into our own hands in the absence of an answer. We struggle with our faith, as they did.

Cancer can be the ultimate waiting room. We wait for a diagnosis and then to learn more about our diagnosis. We wait for test results. Then we are in the ultimate waiting room after treatment, waiting to find out if our cancer will return and if we will ultimately survive our cancer. We wait for years wondering if we are safe, if we have beaten cancer. I know some who have had recurrences at 5, 6, 8 and even 10 years out from their original diagnosis, so feeling "safe" even as time passes is difficult. We are in the cancer "waiting room" for a long time. It's hard to be in the waiting room, it's painful.

The point was also made in the sermon, that in our society we want immediate answers. We are the fast food generation, we know what we want and expect it immediately. And God doesn't seem to work that way. We know many who are not healed and who lose their battles in spite of overwhelming prayer support. The point was made in the sermon that maybe while we want the transaction (I pray for healing and should get healing in return), maybe it is actually the transformation that occurs in others and in ourselves while we are waiting that is key. That there is a purpose to the waiting room. Even for those who lose their battles.

I truly believe that those who lose their battles are finally healthy and free and without pain, and that they will be whole forever. They are forever out of the cancer waiting room. And I truly believe that though we cannot see it from our immediate perspective, there are positive effects from our struggle in those who surround us and survive us. Maybe it's not about us, maybe there is a bigger picture we can't see from here.

I still always think of Abraham Lincoln. I read his biography once...he lost his mother when he was a young boy and had a very distant relationship with his father. Both of his siblings died young. He lost his first romantic love to typhoid fever. He lost 3 of his 4 children at young ages, only one of his children lived to adulthood. I can't help but think that all of the pain he endured, that his many, many hours in life's "waiting room" somehow molded his character to help him achieve the great things he did for so many people and for our nation. I have a kind of hobby, I love to read biography's of those who achieve greatness; many have suffered extraordinary pain and have spent much time in life's waiting room.

I truly believe there is a bigger purpose we can't see from here, but that we will one day understand. One day we will understand the purpose of pain in this very short life of ours. I love the analogy of a tapestry. From the back it is loose and disorganized threads that form no picture, but when viewed from the front it is a beautiful work of art, and the contrast of the dark threads are what makes the art beautiful.

I look forward to one day seeing the front side of the tapestry of this life.

Saturday, November 7, 2009

Half a century

I turned 50 today. It's a milestone...half a century old, 25 years past my favorite age, 25. I loved being 25 as I was educated, had a good job, was independent and self-supporting, didn't feel vulnerable, and still felt I had lots of time to change careers, dream new dreams, embark on new adventures, pursue new relationships. I knew who I was by then and had learned from my mistakes. I was physically healthy and felt there was nothing I couldn't do.

Turning fifty feels like there is less time to dream dreams and embark on new adventures, I have to choose more wisely now. I take less for granted. I am more spiritual. I appreciate more. I choose goals and relationships more carefully. I no longer feel I can have everything, so I choose more carefully what I want. I am more careful as to how I spend my time and who I spend my time with.

I had a 30 crisis, but I don't think I'll have a 50 crisis. I am too grateful to have reached this milestone. In the cancer world I know many who dream of being able to reach the half century mark, who dream of being able to raise their kids to adulthood, to realize dreams. One 23 year old lost his battle with colon cancer recently...diagnosed at 21 he spent the last two years of his life ferociously battling the disease. He had so many dreams he will not realize. Another friend recently died of my same cancer...she was diagnosed when she was 36 and fought a very long and hard battle with signet ring appendiceal cancer for the last four years of her life. She didn't live to see her children become adults, they are young teens. She didn't get to be 50; she'd just turned 40 when she lost her battle. She would have loved to have celebrated the 50 year landmark.

So I feel only gratitude at turning 50. I've lived half a centuy; I have a good marriage of 22 years, I have been unconditionally loved and supported by my husband for over two decades. I was able to have children and to raise them to adulthood. I was able to have a best friend and confidant for 30 years. I was able to do meaningful things, I hope, with my life for 50 years.

I am blessed to be 50....no crisis for me. But I do feel a need to make my time here count. To be worthy of having lived for 50 years. I feel humble and grateful.

Thursday, October 29, 2009

Test Stress!

I have a friend who recently had a needle biopsy for a lung mass that might be cancer. She is waiting for pathology results. They told her she'd have the results in 5-7 days. She called the office over a week later, no results yet. She spoke of a PA's voice that went from chipper to kind of "depressed" on the phone when she'd called the office and asked for her test results. What did that mean?

It made me think of how closely we watch facial expressions and listen for changes in tone of anyone involved in our tests...the person performing our tests, the nurses in our physician's office, our physician as he or she enters the room. Though we are thinking a change in expression from happy to depressed is an indication of something bad about our test result, it could be a voice or facial expression changes because someone just remembered they'd forgotten to pay a bill, take out the garbage or any number of things. But we don't know. Maybe the PA on the phone with my friend had just realized he'd lost his pen as he was trying to write down her information.

Sometimes I've even thought that the nurse in the office talking to me in a cheerful (but distracted) tone might just be doing that as a cover, they know my bad test results but don't want to let on, they want the doctor to be the one to tell me.

We are hyper-vigilant in all of our observations. We read into every posture, every facial expression, every vocal inflection. I've felt before, in waiting for test results, that I could relate to criminal defendants before a judge awaiting sentencing. Will they be paroled (good test result, but we'll test you again later to see if you pass), hard time (more surgery and chemotherapy) or a death sentence? It's kind of the same for us. Awaiting our fate, our lives in the balance.

I remember having so many thoughts going through my head when I'd had a CT done and was waiting for results. Every time the phone rang I was afraid it was a doctor calling with bad news. They wouldn't call with good news, or would they? And if they didn't call, was it because they wanted to tell me the bad news in person when I had my appointment and not on the phone? Once I had a hang-up message on my answering machine a few days after a CT. Was it my doctor? Did she not want to leave the bad news on an answering machine and so hung up without leaving a message?

My husband is a nurse who works at the hospital where I have my CTs done, so instead of waiting for results, I finally started asking him to access my results on his computer at work and to let me know what they were as soon as he got them. He always called me as soon as he got to work with my results. The last time he was supposed to call me with my results, he never called. I spent 8 hours sure it was because the results were bad and he would tell me when he got home as he didn't want to tell me on the phone (turned out he got very busy when he got to work and forgot to pull them up, they were fine).

I've had 13 CTs so far and countless tumor marker tests. The stress of waiting for results is horrible. No one who hasn't had a cancer diagnosis knows what we go through.

This podcast from CR Magazine has some great ideas for dealing with the stress of testing: Beating Test Stress

I loved one of the examples in the podcast...a patient walks into the office for test results and the doctor sees her in the waiting room and says "Your tests are fine!". The next time the patient goes to the office for test results, the doctor says nothing to her in the waiting room. Is it because the news is bad? We think that way.

The advice in the podcast is very good, we should be very clear to our physicians...please call whether the news is good or bad. Or don't call at all, I want my results at the office when I am there for my appointment. Being specific about what we need can give us some control at a time we feel our lives are out of control. It's another way we can advocate for ourselves.

Tuesday, October 27, 2009

Attitude!

I hear a lot about positive mental attitude and the fight against cancer. When I was diagnosed, I did have an attitude, but it wasn't necessarily positive. I knew my prognosis was poor, and I didn't know if I would survive. While I made plans for treatment in hopes of staying alive, I also contemplated dying and dealt with the realization I might lose my battle. The believer I was in statistics (I'd been educated in medical research), I realized I was up against tough, almost insurmountable odds. I often felt depressed, anxious, and afraid, though I didn't share those feelings with those around me who felt I needed a positive mental attitude to survive. I acted positive around them to make them feel more comfortable.

I did have an attitude, though. One of anger towards the beast cancer was in my life. One of determination to do anything I could to not let cancer control me and defeat me. I was poised to fight with all I had, to not go down without giving it everything I could. I was (and am) a control freak. I refused to let cancer control my life. I'd faced other beasts in my life, and I'd learned to fight for myself. Cancer was just a bigger beast.

That attitude served me well. It made me read all of the available research about signet ring appendix cancer (including the awful stats). It made me search for the best weapons to fight my disease in terms of specialists, surgeries and chemo. It made me bold enough to reject two respected physician's treatment recommendations and to travel across the country for treatment instead.

It made me bold enough to stay out of bed and walk halls incessantly beginning 24 hours after my surgery, though I couldn't even stand up straight. I love to play piano, and I wouldn't let cancer stop me from doing what I loved....I played the piano in the hospital lounge days after my surgery with IVs in my arms. I was driving my car and doing normal things two weeks after my surgery, independently. I wouldn't take narcotic pain medication that would slow me down; I instead took anti-inflammatory medication, NSAIDS.

My attitude made me refuse to have my life controlled by chemo treatments...I drove myself to and from treatments, went grocery shopping on the way home from chemo and continued to do athletic training while on chemotherapy (new studies show better tolerance of chemotherapy for those who work out regularly). I wasn't going to let the chemo dictated by my cancer control my life. If I had any chemo side effects, I demanded my oncologist find a way to control them, and she did.

In the end, I was discharged from my surgery in 6 days instead of the expected 14. I suffered no surgical complications. I suffered few chemo side effects, and the ones I did have were corrected early on with medication. I lived a normal life on chemo. I made a point of doing the things I liked to do and being independent during treatment. My blood counts didn't drop, I was never nauseated, I ate well and gained weight while on chemo.

After treatment, while I was living in cancer's "limbo", a tough place emotionally, I sought help. I read books on coping with fear, I joined a support group for a bit, I volunteered at a hospice to become comfortable with the notion of dying. I also did a lot of volunteer work...soup kitchens, nursing homes, delivering Meals on Wheels to the elderly and handicapped. In part my volunteer work reminded me of how fortunate I was...I wasn't hungry, I had a home and could walk without the aid of a walker. It helped me to remember to appreciate that, helped me to look beyond myself and my situation.

I feel badly sometimes when I talk to patients who assume their life will be consumed by surgical recovery for many months. Who assume chemotherapy and its side effects will dictate and be a detriment to their lives. Who surrender to the cancer diagnosis.

I don't know if that determined and angry attitude played a part in my survival, but I think it at least helped me through the rough parts of treatment and the emotional limbo beyond. I think in the end it helped my outcomes from surgery, chemo and cancer limbo to be manageable. Maybe it's the reason I recovered so rapidly from surgery, suffered so few chemo side effects, have remained cancer-free.

And in the end I beat the beast. Cancer lost its battle for my life. I don't credit a positive attitude, but I credit an angry and determined attitude. The determination to stand up to and challenge the beast that is cancer.

My advice to those diagnosed is to not surrender, but to fight. A cancer diagnosis knocks us down, but we can't let it keep us down.

Tuesday, October 13, 2009

Thank You CR Magazine!

I am deeply grateful to CR Magazine, a publication of the American Association for Cancer Research, for an article just released in their 2009 fall edition, Fairest of All, about Audrey Hepburn's struggle with appendiceal cancer. Audrey Hepburn lost her battle with the disease in 1993.

The article honored Audrey Hepburn's life, but also did so much to promote awareness of appendiceal cancer and the newer treatments available. I was honored to be interviewed for the article a few months ago; a bit of my story is included.

Appendiceal cancer is an orphan disease, many of us newly diagnosed learn for the first time that the disease even exists, that an appendix can become cancerous. Most physicians have seen few if any cases in their lifetime. Those of us who seek treatment from a specialist often have to travel great distances.

Our disease is rare, so receives little media attention and few research dollars. Just this week I was asked if there is an appendix cancer awareness month...to my knowledge there is not. But there should be.

The CR Magazine article is free, it is available on-line even without a subscription to the magazine. The article has also been posted on the American Association for Cancer Research's home page "In the Spotlight".

I hope the article is widely read. Again, I am very grateful to CR Magazine for drawing attention to our battle and for promoting awareness about our disease. They did us a great service.

Sunday, October 11, 2009

Being Your Own Advocate

One thing I've learned in my life in the cancer community is how important it is to be your own advocate.

I had an advantage at the time I was diagnosed in that I was already a medical professional. I had great doctors and surgeons locally, but being around physicians daily for years, I had never bought into the "doctor as God" mentality. I trusted and respected my doctors, and being in the medical profession also meant I knew who the good doctors and surgeons were so I was always cared for by the best.

When I was diagnosed, my surgeon told me I had a rare cancer, and he wasn't sure exactly what the treatment might require; he would do some research and get back to me. In the end, I was told that in three days they recommended I have a hemicolectomy, as they knew I needed that. The plan was to not discharge me from the first surgery, but to proceed directly with the hemicoloctomy.

I requested instead to be discharged without the hemicolectomy. If I was going to have a major surgery, I told them, I wanted only one major surgery, and I wanted to have the correct surgery the first time. I wanted to do some of my own research into the disease before I proceeded with further treatment. My surgeon understood and discharged me from the hospital. He respected my decision.

I went home and spent hours and hours on the internet looking for medical research studies related to appendix cancer. It was hard...there was little information and the information I did find didn't show very good survival statistics. Doing the research was very difficult emotionally; I realized how serious my cancer was. I so wished I instead had breast cancer or another cancer with 80-90% survival rates, a cancer that had extensively published research and standardized treatment protocols. Again, though, I was fortunate that being a medical professional of many years, I was able to read and interpret the medical research articles I did find.

From my research, I felt my best prospects seemed to be a cytoreduction surgery and peritoneal chemotherapy. I also decided I needed a surgical oncologist and not a general surgeon.

When I first met with my local oncologist, she agreed that my cancer had a poor prognosis and for optimal treatment I needed to see a surgical oncologist at a university hospital in nearby Chicago. She agreed I needed a cytoreduction surgery, not just a hemicolectomy. When my medical records were sent to the surgical oncologist, though, my appointment there was promptly canceled; I was told they had no treatment available that could help me based on the high grade of my tumor and appendiceal perforation. They said my cancer would become widespread into my abdomen and that I would eventually succumb to it, I would not survive. Had I accepted that respected surgeon's initial evaluation, I would not be alive today.

In the end I did my own research and referred myself to Sloan-Kettering as I knew they offered cytoreduction surgery and peritoneal chemotherapy for appendix cancer. I told my local oncologist I had self-referred and made an appointment to be evaluated there, a decision she in the end supported.

I went to my initial appointment at Sloan loaded with intelligent questions based on the research I had done about my disease. I requested peritoneal chemo within 24 hours of my surgery, which wasn't in their original plan, and that request was granted. I requested to add to the surgical consent another procedure, the insertion of a portacath for future IV chemo vs. having a second later surgery at home for that procedure, that request was also honored. I was able to have input into the size of my abdominal incision (no, vanity isn't a concern, open me as wide as you need to take a really good look!). We also agreed that my ovaries should be removed though there was not yet signs of metastatsis there, as appendix cancer so commonly spreads to the ovaries, and I was at risk due to the perforation. Even after my surgery I asked that my pain medication be changed from morphine to a powerful non-narcotic pain medication that I preferred, Toradol; that request was also honored. I think not being on narcotics for pain prevented post-operative nausea, helped me stay more awake and active as I recovered and helped my bowel function return to normal sooner.

In the end I was successfully treated, though treatment was delayed a month and a half while I did research and sought opinions. I am so glad I didn't agree to the initial hemicolectomy offered by my general surgeon who felt my cancer was a form of colon cancer and needed to be treated as such. As it turned out, I had other small tumors in my abdomen and needed more than a hemicolectomy. I don't know if those smaller tumors would have been discovered by a general surgeon during a hemicolectomy, they were not discovered during my initial exploratory laparoscopic surgery or CT scan. If I'd had the hemicolectomy locally, I also would not have been offered peritoneal chemotherapy, which I think was important to my long term recurrence-free survival. If I'd initially had the hemicolectomy and had a later recurrence, scar tissue and adhesions would have made a second surgery with peritoneal chemo potentially less successful.

I think it's important, especially for those of us with rare or difficult cancers, to seek more than one opinion (I had three prior to definitive treatment) and to be educated enough to know what our choices may be...and to find, as I was fortunate enough to have found, a surgeon who respected my right to have input into my treatment. A surgeon who treated me as a partner and team member in making treatment decisions.

There are many things important to survival, but I think one of the most important things we can do, hard as it may be, is to educate ourselves early on about our cancer and to become our own advocates. We need to be able to make informed and intelligent decisions, and to actively participate in our treatment decisions.

Sunday, October 4, 2009

Survivor Seasons

Over the years since my cancer was diagnosed and treated, I’ve become aware of the new trend addressing survivorship issues. The recent issue of Cure magazine came with supplement included, Surviving Well. It documents many things those of us who have been diagnosed with cancer know…it’s a long road, and the time after treatment ends can be just as difficult as being diagnosed was initially.

My heart goes out to those who finish treatment as I know that is the beginning one of the more difficult roads on the cancer journey; and about that time, those around us with no cancer history expect us to be return to our old selves, to put cancer behind us and to resume our pre-cancer lives where we left off. But we can’t. This period of time has become known as the season of “Transitional Survivorship”. It is an emotional time of anxiety, fatigue, grief, insomnia and fear of recurrence. We are acutely aware of our own mortality, we feel a loss of the ability to control our lives and our futures, we have to readjust to the work environment, have a mountain of medical bills to pay, and relationships to those around us change. For many women who have had an appendix cancer surgery, we’ve lost our ovaries, so this period of time is also an adjustment to surgical menopause and all of the emotions and physical changes surrounding that. It's emotionally a very difficult time. It is said the longer our initial cancer treatment, the longer this transitional phase lasts. And for appendiceal cancer patients, the surgery is major, the recovery time long, and chemotherapy prolonged.

In the Surviving Well publication, a woman interviewed struggled emotionally and finally joined a support group to help with emotional healing three years after she finished treatment. The American Cancer Society found that 30% of survivor have long-term emotional effects even after 11 years of survival. I've been in touch with about 700 appendiceal cancer patients, and for almost all, the emotional recovery in the aftermath of treatment has been much more difficult that their physical recovery from surgery and chemo. The transitional phase can be a long one.

I am blessed; having lived in the “Transitional Survivor” season for many years, I am finally entering the “Permanent Survivor” season. I worry less about recurrence, I’ve started making future plans again, I don’t think of cancer every day, I don’t get as many tests done, I feel less vulnerable. I feel a little more in control of my life and my future…though I know I am at risk for second primary cancers related to treatment and that there are no guarantees I won’t have a recurrence. I treat myself better and make better use of my time. I live more purposefully. I have many new friends and stronger relationships in my life. I’m not the same person I was before cancer, but I like myself and my “new normal” better now.

But it took a long time and many emotional struggles to get here. It was not, by any stretch of the imagination, easy to get here, to the place I am now.

Monday, September 21, 2009

Inflammation

There's a great article in the new issue of Cure magazine, "The Internal Flame" about the connection between chronic inflammation and cancer. I attended several scientific presentations about the inflammation-cancer connection at the AACR annual meeting this year. Long term inflammation from chronic infections, such as hepatitic C, are associated with the development of cancer. Some autoimmune diseases are also associated with an increase cancer risk. It has been discovered that cancer in essence hijacks our immune system processes to promote it's own growth and metastasis...what our body means for our good, cancer uses to proliferate it's own growth and destructive processes.

I have an autoimumne disease also, rheumatoid arthritis. Kind of interesting, cancer in the end caused my RA to worsen, as I had my ovaries removed in my cytoreduction surgery. The early menopause initiated by the removal of my ovaries caused my RA to escalate, which in turn caused me to become dependent on more immune/inflammation suppressing drugs to control that disease.

I also take a chemotherapy drug weekly, methotrexate, to control my RA. Interesting how the use of that drug came to treat autoimmune diseases. Woman who had RA and cancer and who were treated with methotrexate for cancer went into remission of their RA while they received it. They experimented with dosages until they found the lowest possible effective dosage of the chemotherapy for inducing remission in RA and other autoimmune diseases. They know it works, but not why. More chemotherapies are being tested for use in autoimmune disease. It is so interesting that drugs that suppress cancer also suppress inflammatory autoimmune disease while at the same time inflammation is being associated with cancer occurrence. I am also on several drugs to suppress my immune system and inflammatory responses, including low dose steroids.

Interesting too, that a protein our body creates and that can destroy some types of cancer cells, TNF (tumor necrosis factor), also plays a part in the destructive inflammation of RA and other autoimmune diseases. It was suggested once that I take new drugs that block the effect of tumor necrosis factor. I felt that if I had an over-abundance of this protein, in light of my cancer history, I didn't want to "block" it. I'm waiting to see long term studies about the cancer incidence in those taking these new drugs. I don't believe patients with a cancer history were included in initial clinical trials of these drugs.

At first, after I was diagnosed with cancer, I was afraid of suppressing my immune system with the RA drugs...don't we all want a good immune system and hope our immune system will prevent our cancers form recurring? I was so afraid suppressing my immune system would make me vulnerable to a cancer recurrence.

Now after reading a lot about the cancer-inflammation connection, I wonder if all of these drugs that suppress my inflammatory responses and immune system might in the end help protect me from cancer? But then again I wonder if my malfunctioning immune system and chronic inflammatory disease had anything to do with my cancer occurring in the first place. It's a mystery.

I don't know, but I continue to take my drugs as they keep me in remission from RA, and I haven't had a cancer recurrence in 8 years, so the drugs certainly do not seem to be hurting me in that regard.

But it makes me especially intrigued by the new connections between cancer and inflammation...I'm watching that research closely.

Thursday, September 17, 2009

The Terrorist Within

My last post was about 9/11 and the terrorist attacks on our country. I visited Manhattan again for yet another appointment a few months after 9/11. The depression in the city was palpable. I visited the place where the Twin Towers had been only months before. I saw the quilts, the pictures and the memorials.

I talked to the desk clerk at the hotel where I'd spent so much time and asked him what it had been like to be in the city on that day. The hotel was on the Upper East side of Manhattan. Manhattan is an island 6 miles by 11 miles. The clerk lived in lower Manhattan. His son attended a grade school in lower Manhattan near the Twin Towers. When he heard of the attack, all transportation in New York had been shut down; no cabs, trains or buses. The clerk left his job and ran through barricades all the way to lower Manhattan to find out if his son was okay. It turned out his son's class had witnessed the planes crashing into the buildings from the grade school window. He told me that even months later, his son could no longer sleep alone and climbed into bed with him every night. Life wasn't the same, he lived in fear of another attack.

Cancer is like that, a terrorist attack on our bodies, but there is nowhere to go to hide, the terrorist is within. Cancer attacks us when we least expect it. After a cancer diagnosis we live in a high level of alert all of the time. We go from high alert to red alert with every CT scan, every test. We don't trust what is around the corner, our own bodies are suspect.

Via my participation in the Scientist Survivor Program, I was very privileged to meet and speak with a renowned and personable cancer scientist, Dr. Geoff Wahl. He is passionate about our being "good ancestors" and leaving a legacy of a cancer-free world to those who survive us. He heads the Gene Expression Laboratory at the Salk Institute in California and is a past president of the American Association for Cancer Research. He is truly one of my heroes. He has devoted his life to ending cancer's reign.

Dr. Wahl wrote an article I wish you would read, Fighting the Terrorist Within. He states "Fighting cancer bears a striking resemblance to our fight against terrorism. Cancer strikes just as randomly and unpredictably, and it causes suffering, death and great personal loss to family, friends and loved ones left behind. Tragically, the Sept. 11, 2001, attacks killed more than 2,900 people on that fateful day. On any one day, cancer kills more than 1,500 people in the United States alone – about one death per minute, or more than 564,000 Americans each year."

I communicate daily with those who are victims of cancer's terrors. I've lost many friends to the terrorist that is cancer. We need to devote at least as many resources to fighting cancer, the terrorist within, as we devote to preventing terrorist attacks on our country. We need a war on cancer. We do need to be good ancestors and to abolish cancer's hold on the future of those who follow us.

Friday, September 11, 2009

September 11, 2009


I just checked the date, and realized it was September 11, a day we will always remember. The date may have more significance to me than to others. I had my cytoreduction surgery in New York City on May 16, 2001. I was scheduled for three month follow-up appointments on September 5-6, 2001.

My oncologist in New York called me near the first of September and said she would be unavailable for my Sept. 5th appointment, could I please reschedule the visit for September 11th. At the time I told her I had already booked a flight, made childcare arrangements, and reserved a hotel room, so I would be unable to change my appointment. September 11th was also my scheduled chemo day, and I didn't want to miss or reschedule a chemo treatment. She reluctantly agreed that this one time only she and I could instead have phone conference.

I went to my appointments on September 5th. As we were staying overnight in New York we had some extra time between appointments. During previous visits we had used the extra time to explore New York City. On our first visit we had explored the Upper East Side. My second visit we explored mid-town; saw Times Square, the New York City Ballet, and Carnagie Hall. The third visit in September we explored lower Manhatten. I took pictures of the Twin Towers from the Stattan Island ferry. I had the pictures developed on the 10th. The night of the 10th I showed my kids pictures of the Twin Towers on the New York City skyline. The very next day, the planes hit the towers and they ceased to exist.

When I went for my chemo appointment on September 11th, all eyes in the office were glued to the TV sets and the news broadcasts of the terrorist attacks. On the news I saw people running down streets I had walked on just days before. I'd sat on a lawn near the Twin Towers just days before eating a picnic lunch. I wondered how many of the people I'd seen that day worked in the Twin Towers and had lost their lives. I thought of what it would have been like if I'd changed my appointment to that day. Would we have been sitting next to the Twin Towers when the planes hit?

I'd been to New York with a cancer diagnosis I wasn't expected to survive, but others, I'm sure many who were very healthy, perished in the Towers just days after I'd sat on the lawn wondering if I'd live much longer. It seemed so ironic.

In my mind a phrase echoed for weeks...none of us is promised tomorrow. Maybe a thin silver lining to a cancer diagnosis is that we don't assume tomorrow anymore. We live with the fear of our days very possibly being limited. We no longer take our tomorrows for granted, we know they are not promised.

Wednesday, September 2, 2009

More Gifts from the Sea

I am currently spending a week alone at the ocean on Florida's Panhandle. My husband and his dad have always reserved Labor Day week for father-son time, and with both of my kids away at college, I decided to spend the week at the ocean. All by myself! I did this last year also, and it was awesome, so decided to take the opportunity again. For me it's a great time to think, pray, write and to grow.

I am reading a book my daughter gave me to enjoy during my week away, Anne Morrow Lindbergh's "Gift From the Sea". I love the book, I treasure Anne's wisdom. She took two weeks every year to be alone by the sea, to regroup, to soul-search, to reinvent herself. She did that even as the mother of 5 children. Cool thing is, she wrote her best-selling "Gifts From the Sea" after many years of ocean sabbaticals, when she was the age I am now, 49. She published several more books over the next two decades and lived to the age of 94...for her, middle age was just that, only the middle of her life with many more years to be productive, to grow, to make a difference.

Reading her book compelled me to read her biography. She was a great woman who was also, like her husband, an aviator. She won numerous awards and remained her own person with her own interests and goals in spite of her infant son being murdered, marital difficulties and raising 5 additional children.

I was reading today her chapter from Gifts, "The Oyster Bed" in which she contemplates the "middle age" portion of life. She talks about the growth pains of early adolescence....discontent, restlessness, doubt, despair and longing. But we accept those feelings as normal, knowing adolescence is a transition phase to growth, wisdom and to productive adulthood.

Some of those same feelings accompany middle age as children leave and our bodies age and our lives change. Maybe, she says, the feelings that accompany middle age also herald growth and new beginnings. As she states "Is it possible that middle age can be looked upon as a period of second-flowering, second growth, even a kind of second adolescence? One might be free for growth of mind, heart and talent; free at last for spiritual growth".

Women I admire most are those I see who thrive and grow and accept new challenges in middle age. I loved examples of this in a Time Magazine article I read several years ago "Midlife Crisis? Bring it On". Many middle-aged women have gained wisdom from adversity they've experienced in the first half of their life, adversity that has in the end given them new aspirations.

My best friend of 30 years, also a nurse, is my age and going back for a Master's degree to start a new vocation as a licensed counselor based on her experience with her own daughter, who was diagnosed with bipolar disorder and successfully treated years ago. My neighbor, who told me she wanted to die when at age 60 she lost her husband, in the end became curious about her own ancestry; her husband's family had been central to their lives during their marriage. That led her to learn to use a computer and genealogy software. She has since become a wizard at genealogy research, has published 2 genealogy books, has learned to drive on expressways all over the country to touch base with distant new-found relatives and has traveled to Germany and Russia to learn about her ancestry. She's connected hundreds of people to their heritage and to each other. She also now manages real estate, has learned to operate the large farm equipment of relatives she located in the Dakota's and even line dances with new friends for the first time at age of 72.

I see people now all of the time who use experiences that have brought them to middle age to reinvent themselves and their lives. I want to be like them. Maybe the hard events we overcome, like cancer, are gaitways to new beginnings, to new opportunities to reinvent ourselves, to new ways to make a difference.

Wednesday, August 26, 2009

Beginning, Middles and Ends

Sorry I have not posted in awhile. My life has been kind of busy lately, getting both of my kids off to college. I am officially an "empty-nester" now for the first time. I have been an "empty-nester" for 7 days.

My kids have been calling often, so we are still in close touch, and my youngest plans to come home to visit often. I'm so glad for that (even though we ran over on cell phone minutes!).

I talked to a mom a few days ago who has one in college and another a senior in high school. When I mentioned to her I was an empty nester now as both of my kids are away, she got a look of dread in her eyes. She is terrified of her upcoming empty nester days. Another empty-nester mom wrote me yesterday...she is a few years out in the experience, and two of her kids now live out of the country, one in Japan and one in the Middle East. Once we let them out of the nest we don't know how far away theirs lives will take them.

I know lots of women experience a crisis when their kids leave the nest. I'm not having a crisis; but I guess my perspective is different.

When I was told I had an untreatable cancer and not expected to survive, all I wanted in life was to be here long enough to raise my kids to independence, to see them off on their own independent life journeys. So for me, in a sense, it's a celebration to have made it this far. When I was diagnosed, I did not want to abandon my kids when they needed me, I wanted to live long enough for them to "abandon" me, to fly off on their own wings as adults. I have realized that dream and am very, very grateful for that.

While I love and miss my kids, I want them to be able to achieve dreams and to be independent and not to rely upon me solely, as they did when I was diagnosed. I want them to yes, care about me and love me and for us to always be close, but I don't want their future to depend on my presence...as cancer made me understand how fragile my presence is. I want them to have dreams and goals and hopes that are theirs to motivate them, to have lots of people who support them whether I am here or not. They are amazing people and have so much to offer this world.

I always pursue spiritual growth. To me it's why we are here...I have always believed we are first spiritual beings having a physical experience vs. physical beings having a spiritual experience. To me our physical presence isn't "it", our experience in this lifetime is just a piece of a larger puzzle.

In a grocery store checkout line recently, I was intrigued by a booklet entitled "Complete Idiot's Guide to Spiritual Healing". In many ways I am a novice in life, and I am not very proud, so I love the "Idiot" books. I already own a few. I paid the $2.50 for the booklet, and haven't read it all yet, but there was a paragraph I flagged in the beginning from the chapter that I liked, "Beginnings, Middles and Ends".

I've been at all of those points with my kids...beginnings as a new mother, middle times when I was raising them, and ends, now, when they are on their own as individuals with their own dreams and values to guide them.

The paragraph I flagged in the "Idiot" booklet said this..."Life is a series of beginnings, middles and ends. Each ending is the start of a new beginning and each beginning is the start of a new ending. Often we have a hard time letting go and trusting the process. We fearfully hold on to something when it is time to let go and miss the joy life has to offer". I agree.

I am so fortunate...I've lost friends to appendix cancer who still had children under 5 years old. I've lost friends who were in the middle, with pre-teen and teen children who still needed their mom. I've lost friends who were never able even to realize their dream of being a mom. One in her 30s died only an hour after I met her in Texas. So many lives cut short. I've lost a lot of friends to appendix cancer; that tempers my empty-nest perspective now.

So I see this empty-nester time as an end of sorts...of my kids needing me less and being less dependent on me, but also a time as a new beginning, for them and for myself. While I feel a sense of loss, I also feel a sense of liberation. For my kids and for me, it is a not so much a time of endings, but of new beginnings. I'm not done yet, and neither are they.

I'm so glad that my kids, and I, have that opportunity. For a new adventure, a new beginning. I am so grateful for this time in our lives.

Thursday, August 13, 2009

One Day At A Time

I get frustrated sometimes at how the idea of living "one day at a time" is glamorized. Appreciating what each new day brings and enjoying the good things in your life every day is something many are better at after a cancer diagnosis, but that's not the same as living "one day at a time". Many of us after a cancer diagnosis do involuntarily live "one day at a time", because we lose the ability to think of our life in future terms. We understand profoundly that we may not have a future. It's a tough way to live.

When I was diagnosed with a high grade Stage IV cancer, the survival statistics I found in medical literature indicated my odds of dying within 3 years were 9 out of 10. I have always trusted statistics. I am medically educated and for the most part diseases in patients I've cared for, with few exceptions, have followed documented statistical patterns for their illness. I'd seen some odds defied over my decades of caring for the ill, but not often. So I trusted my own disease statistics.

For the longest time after my diagnosis I was unable to plan for a future. I could not schedule appointments for 6 month dental cleanings. I could not say the words "next year". I couldn't commit to vacation plans. I had trouble making career commitments, so I did a lot of volunteer work. When I returned to work I chose PRN employment that required minimal commitment.

I think we take for granted how often we assume a future. We take for granted all of the times we say without thinking "next summer" or "next Christmas" or "when my kids are older" or "when I retire". When I could no longer take a future for granted, I learned that much of what makes our lives worth living is anticipating a future, reaching for goals, realizing dreams, making plans.

I have now survived cancer-free for eight years. I can say now "next year", though I will never think about or make plans for a retirement...I can't think that far into the future still. I know from my own experience how quickly the bottom can fall out of our lives. I know with certainty none of us is promised tomorrow. So I plan a bit for the future now and have learned again to set goals and dream a bit, but it will always be with reservation. I am no longer naive. I no longer assume I will live to old age.

I miss still the old before-cancer days when I took time in my life for granted, when knowing that bad things could happen was an intellectual but not emotional knowledge.

My kids are young adults now. They see their future as wide open. They are making plans for this year but already contemplating where they will live next year, whether they will change their college majors, whether they might one day marry or maybe stay single or live in another country. They think maybe one day they will have children or maybe not, maybe they will adopt instead of having their own. They take for granted a future of endless possibilities and dreams. I remember when I once felt that way.

As I watch my kids dream of the future, at the same time I am trying to support the family a 23 year old cancer patient who will soon lose his battle after a two year fight, who is now living without plans for a future after almost completing his college education.

I hope my kids get to keep planning and dreaming....to stay naive for a long while.
I hope that they don't have to live "one day at a time" until they are very old. That they continue can dream of endless possibilities for the future. That they never feel their future is threatened.

Tuesday, August 4, 2009

Empowerment

I have a kind of interesting story. I had joined our local YMCA gym awhile ago to work out, get fit, and lose weight. I was working out several days a week, and I guess got kind of bored with the gym routine so decided to check out some of their exercise classes. They offered a Tai Chi class, and I decided to enroll. An appendix cancer patient I was in contact with was getting a Master's degree in Chinese medicine, and I'd heard Tai Chi was a kind of "moving meditation", so I was intrigued. It turned out the YMCA class was canceled, so I checked in my community to see if anyone else offered Tai Chi classes. I found one and joined. It turned out, to my surprise, that the class wasn't about the "mind body moving meditation" form of Tai Chi, but Tai Chi as a martial art focusing on self defense.

As a teen and young adult decades ago, I'd been physically abused, so know what it's like to feel physically vulnerable. I also backpack with another woman, and we'd been told before by rangers to be careful as women had been attacked in wilderness areas where we wanted to backpack. I'd toyed with the idea of taking a self-defense class before, so decided to stick with the Tai Chi martial art class.

In my Tai Chi class we learn how to disarm and disable anyone who might attack us. Tai Chi is actually a deadly martial art. We also learn pressure points...amazing, I've had a martial arts master use pressure points on my arm that made me unable to use my legs. Tai Chi as a martial art relies heavily on the use of pressure points.

Tai Chi is hard for me as it requires me to be very focused on detail in movement, to move slowly, to learn complicated postures and form....being strong and fit and large means nothing in this martial art, technique is everything. It requires discipline, confidence, patience and concentration...all good attributes.

But to me it is so empowering. It gives me tools to defend myself; it gives me confidence, it makes me less afraid to do things I might want to try solo as a female. Fear is so limiting. I don't want to be afraid. I want to feel strong and confident.

I think a sense of empowerment as a cancer patient is vital. Education and knowledge empowers us. Having choices empowers us. Feeling a sense of control empowers us.

Empowerment is a good thing.

One of my goals is to form a group for cancer patients at a large local oncology practice. Not a "support group", but an "empowerment group". A group of cancer patients who can share ideas and knowledge and resources. Cancer patients who give confidence to and yes, even support each other. Who gather strength from each other. Who empower each other in our battle against cancer.

Friday, July 24, 2009

What Happens to a Donated Tumor?

I truly love CR magazine. It's a relatively new publication of the American Association for Cancer Research. Since I've been involved in the Scientist-Survivor Program, I've been able to meet the staff of the magazine...unbelievable to me how such a small staff is able to turn out such a quality publication. Their most recent issue has an article about donating our tumor specimens for scientific research.

Until the last conference I attended at the AACR's annual meeting, I'd never really thought about donating tumor specimens. Anna Barker, the Deputy Director of the NCI talked to the survivors and advocates at the latest conference about the need for patients to know what happens to their tumors when they are removed, how they are preserved if saved, who has access to them, where they are stored.

As a nurse, most surgical consents I have patients sign have a general clause releasing rights to all tissues removed from the patient's body. I'm guessing my own surgical consent said something to the same effect. I think I'm like most cancer patients; we want our tumors removed, and assume they are disposed of...good riddance. We want our tumors gone and destroyed.

After becoming familiar with cancer genomics with and the Cancer Genome Atlas project via my involvement in the Scientist-Survivor Program, though, I now would care now what happened to my excised tumor, how it was preserved. In the best of worlds, all of our removed tumors would be preserved in their most usable form and be accessible to all doing cancer research. Maybe scientific and pharmaceutical access to our tumor specimens would advance the science of cancer research and help to one day find a cure for our cancers.

For a great article on the subject, read "What Happens to a Donated Tumor?" in the current issue of CR Magazine. Very thought-provoking. Something we really need to think about as cancer patients and survivors. We need to make our struggle count, we need to help someone else not have to face what we have faced.

Wednesday, July 22, 2009

When Someone You Love Has Cancer

I was recently asked to participate in another blog book tour. I love to read and love to write, so was happy to accept the invitation. The book was "When Someone You Love Has Cancer: Comfort and Encouragement for Caregivers and Loved Ones" written by Cecil Murphey, who co-authored with Don Piper another book I'd enjoyed, "90 Minutes in Heaven". Cecil Murphy has written over 100 books, many as a "ghost writer". He is a former pastor and volunteer hospital chaplain. He is also the husband of a woman diagnosed with aggressive breast cancer, so is very qualified to address this issue.

Before I received the book, I was worried about being able to read it in time write my review. I was pleasantly surprised when I received the book; it was only 67 pages long. What impressed me most about the book was the profound wisdom contained in those few pages. I appreciated that the book was short and an easy read, especially considering its intended audience, those traveling the cancer journey with someone they love. From my own experience, I was so overwhelmed after my own diagnosis that I had trouble concentrating for a long time. I craved simplicity. Reading hundreds of pages wasn't something I could easily do at the time. Those close to a person with a cancer diagnosis I'm sure are in a similar frame of mind.

The book was filled with wisdom to guide those supporting someone with a cancer diagnosis. He identified his own sense of shock and helplessness when someone he loved was diagnosed. We all, patients and caregivers alike, hear nothing after the words "its cancer" at the initial doctor's appointment. He talks about the numbness, shock and grief of having someone you love diagnosed with cancer. Caregivers share many of the same emotions those diagnosed feel.

The book brought up many good points that I appreciated. He recommends being an active listener, being available to a cancer patient even when they don't want to speak or share, supporting in silence. He advocates acknowledging the negative thoughts and feelings, the anger expressed by cancer patients; we all experience those emotions and feel particularly alone when people are not comfortable allowing us to express them. He also wrote of the need to avoid indulging in statements such as "I know you'll beat this", words that often make the caregiver feel better, but that are not helpful to the patient. There is no way of knowing if we will beat our disease, we know many who don’t. We need to deal with the potential reality of a bad outcome also.

Even as a Christian and former pastor, he discourages throwing around religious slogans. A minister I know who has a great belief in heaven and whose wife was diagnosed with an aggressive cancer once tearfully said in response to congregation members who talked about his wife's eternal destiny "Yes, I KNOW she'll go to heaven, but I don't WANT her to go now". Statements such as “It’s God’s will” are not helpful. From here we can't understand or know the reasons or God’s will, to pretend we do is not helpful.

Cecil also talks about helping someone diagnosed in a practical sense. The statement "Let me know if I can be of any help" is useless. It is better to objectively identify needs and to just fill them....as church members did for me with a check anonymously left on my windshield to help with travel expenses. I received many calling cards given to me by friends when I needed to contact medical facilities across the county attempting to arrange treatment. A cell phone was given to me by a sister who knew I'd need to communicate with my kids while I was across the country for treatment. Another sister paid our hotel bills unasked when I was 750 miles from home seeking care. My mother-in-law supported my kids emotionally and provided child care when I was across the country having surgery. That help was very much appreciated. There is a great appendix “Practical Things you Can Do to Help Those Diagnosed with Cancer” at the end of the book.

One of the things I loved most about his book was his acknowledging that even those of us who have faith in God feel God's silence at some point in time. I know I did. For a long while I experienced a "dark night of the soul", God seemed not to be there for me. It was a very dark and depressing time for me, but in the end it strengthened my faith. He experienced his own "dark night of the soul" for 18 months so could relate...I've ordered another of his books about that time in his life, "Seeking God's Hidden Face: When God Seems Absent". In my cancer world, that seems to be a common experience.

From his own perspective dealing with potentially losing his wife, the love of his life (who is now 10 years cancer free), Cecil shares many of the valuable things he learned on the journey. His book would be a great gift to anyone suddenly thrust into the role of supporting a loved one with cancer.

There is a Grand Prize offered to readers participating in this tour, the blog tour participant who has the most comments to their review will be able to select the grand prize winner from those who comment. The winner will receive a package of books written by Cecil Murphy with a retail value of over $300.

And to all of you who who have or are supporting someone you love diagnosed with cancer, thank you. You are our heros!

Friday, July 17, 2009

Finding Joy

Sometimes being in the cancer world is tough, sometimes joy gets hard to find.

I was at a point a few weeks ago where I was kind of down. The cancer community is a tough place to be, there's a lot of sadness and grief there. I also work in a hospital intensive care unit. Sometimes I get overwhelmed with the sadness and struggle that surrounds me. I am also getting ready to send my youngest off to college...both of my kids will live away from home next year. We are close and I will miss them a lot. And there's a lot that goes on with kids who are on the cusp of independence. They still love and need you, but look forward to life on their own, to living separate and independent lives. You want them to be independent adults, but still feel a loss.

So, I was needing to find some joy. I wanted to feel really good and lighthearted for a bit.

One of the things that brings me great joy is playing piano. I'd wanted to learn to play since I was 5 years old. I finally started to take lessons at age 29 and actually learned to improvise popular piano music and began to play professionally a few years later. I used to play a lot, but sometimes life gets in the way, and I hadn't played for a long time. So, I played for a little bit at home. Then I decided to do an impromptu visit to the soup kitchen I used to run and to play for the guests there, rusty as I was. I just left my house and showed to the soup kitchen unannounced. I played while the guests were eating lunch, like I did a few years ago. The only thing better than playing for myself is playing for others, knowing the music brings back happy memories for them, seeing them smile. I connect with others via music in a way I can't with words sometimes.

It turned out it was the best thing I could have done. I got to see all of the people who work at the soup kitchen who are like family to me, for a few years we worked together every week; shared our troubles while we worked, teased each other, celebrated each others birthdays, successes and set-backs. We even made time to get together for lunch and dinner when we weren't working at the soup kitchen. I'd missed everyone there. I was treated so well, lots of hugs, lots of catching up, people applauded my piano playing. I felt very loved. I did my best to play requests. Strange thing about me, I am horrible at remembering names, but I always remember the guest's favorite songs. I had a great time, and definitely felt joyful. I went back to play again this week.

I think we need to make a priority of doing what brings us joy. I think it's as important as chemo, as important as a healthy diet, as important as breathing and sleeping. We make time for those things as we see them as priorities, but I think finding what brings us joy should be just as much as a priority, it's vital. It's not selfish to do what makes us happy as individuals, it helps us recharge and be able to give more to others and to ourselves. Whether it's alone time, time in nature, music, or reading a novel...whatever brings us joy needs to be our priority. Seeking joy is a healthy thing to do, we need to make the time.

Tuesday, July 7, 2009

Emotional Honesty

I had an interesting night at work last night. I took care of a Lithuanian patient who had had a stroke affecting her ability to speak. Though she had immigrated to this country decades ago and spoke fluent English, the speech centers of her brain were affected. She could only speak her native language. I had a CNA working with me; she was also from Lithuania and served as a translator for me. I know nothing about Lithuania, so talked for awhile about that country and its culture with my CNA, who immigrated here at age 46. Turns out that in Lithuania she'd been an economist, with a Master's Degree in economy. I am very interested in other cultures, so talked with her for awhile.

In her younger years, Lithuania had been under communist control; leaving the country had been illegal, and attending church had been forbidden. But under communist socialist control, she said their needs had been met, that her education had been free, she had made a good living as a single parent and she paid no taxes. She'd also lived in Lithuania after independence had been achieved. She said there were good and bad things about living under both regimes. In some ways her life was harder after independence was achieved and the communist government overthrown.

I asked her what about American culture had been most difficult for her to get used to, and I was surprised by her answer. She said Americans were always smiling. That they felt they had to put on a happy face even when they were depressed, even when they were experiencing times of despair, even when they were in pain. She said an American would smile at you and act friendly even when they didn't like you. She almost felt like we were emotionally dishonest. She said that in her country people were more honest and open about what they were feeling, so it was much easier to be supportive of other people as you knew what they were feeling and what they needed. They felt no need to conceal negative emotions.

I think after listening to her, that she was right. In America, we always feel a need to "keep a stiff upper lip", to "think positive", to "look at the bright side". Maybe that's not a good thing.

I know in my cancer world many struggle with depression, anger, fear and grief. Many of the 600 cancer patients I've communicated with to date have shared those feelings with me. But most are unable to share those feelings with those around them, those who love them. Depression and fear are seen as "giving up", anger is misunderstood, grief is minimized. Many are told they have to "stay positive" to beat cancer, though studies have shown that is not true. Their emotional struggles are minimized.

I heard a saying years ago that always stuck with me. It was that joy is doubled and despair is halved when shared. The negative feelings associated with a cancer diagnosis need to be shared and understood by those surrounding the person diagnosed. They are a normal part of the cancer experience and need to be acknowledged and expressed. I wonder if in our country there would be less of a need to take antidepressants and to see therapists if we felt we could be more open with our feeling, if we could more easily share what we felt with those around us. Sometimes I think in this digital age especially, we communicate with more people, but the quality and depth of our comunication suffers.


When someone asks me how they can best help a cancer patient, I tell them to listen without offering advice. To allow the cancer patient to freely express the negative emotions that surface. To just listen and not advise sometimes, to allow the patient express the normal emotions that they feel.

We all need to learn to accept and ride the storms in our lives and to seek help when the going gets rough. Maybe we all need to be a bit more Lithuanian. Rainbows only happen after the storm, not before. We need support those during their rainy seasons, to acknowledge and help them ride out their storms.

Sunday, June 28, 2009

Family Vacation

We just came back from our family vacation...it's been a tradition, my husband and I have gone for a week away together with the kids every year since they were about 2 and 3. I love the time the four of us get to spend together without all of the distractions of work and activities, just the four of us spending time together. Time away from computers and cell phones and TVs.We've done lots of things, rented cabins for a week in the Smokies and the Dells, camped, gone sight-seeing and to water parks, to Disney. But this year, since my kids are out of high school and I don't know how many more family vacations we will get, we did something more exotic. We spent a few days in Florida followed by a 5 day Caribbean cruise.

We booked the cruise when swine flu was in the news...between that and the struggling economy, we got very good prices. I loved the four of us eating dinner together every night. For most of the years my kids were growing up, we all ate dinner together as a family. That was really important to me. In high school things changed as they were involved in so may activities. Nowadays, we all work and work different shifts, so eating dinner together is a rarity. We had a nice table for four for dinner every night we were on vacation, with great food we didn't have to cook and no dishes to wash! Lobster tails on our plates in this pic, can't beat that!

We spent a day in Cozumel, Mexico where we went snorkeling and shopping in the Mexican markets, ate at a Mexican restaurant.

We also spent a day in Key West, where the highlight for me was a butterfly conservatory...I love butterflies, to me they are symbols of eternal life. There were hundreds of different kinds of beautiful butterflies there in a huge garden setting.



We spent another day in the Central American country of Belize. What I loved most about Belize was being in a jungle/rain forest (tigers, monkeys and jaguars are native wildlife there!). I loved seeing iguanas running around like we see squirrels here at home. I also loved learning a bit about the culture from a Belizean native.

I am often asked about alternative medicine. In Belize a native told me that for most illnesses they go to the jungle to select plants that they boil and use to treat illness. She told me she had only been to a doctor once in her life. An infusion of Key Lime leaves is used for headaches, another plant for childhood fevers, another to induce miscarriage.

At my most recent AACR conference, I listened to a presentation discussing the development of the chemotherapy drug Taxol. Taxol was originally derived from the Pacific Yew tree. My sister-in-law is receiving Taxol now for breast cancer. One of the chemotherapies I was on was similar to Taxol, CPT-11 (Irinotecan/Camptosar), also initially derived from the Pacific Yew.

This Time article states that "According to the U.S. National Cancer Institute, more than 25% of the ingredients in cancer medicines today were either discovered in rain forests or synthesized in labs from discoveries made there." In Belize they have the equivalent of our drug stores, but many instead go to herbal drug stores for prepared herbal infusions. I wish we could have spent more time in the jungles and rain forests of Belize (though mosquitoes were the most abundant wildlife there). As a medical professional, I would love to spend time with an herbalist in a rain forest.

At any rate, I'm back on-line now...and truly refreshed! But most of all, I'm so glad to have had the time with my family....I hope I get a few more family vacations!