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.