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.

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.