Health | Mesothelioma | Cancer » Cancer Patients

All or nothing?

admin — Thu, 22 Jul 2010 18:48:55 +0000

It’s interesting. Since my own diagnosis, my view of cancer and cancer treatment has changed. I think many of us have thought of cancer as an “all or nothing” disease for a long time. We are either cured or we aren’t. We survive or we don’t survive. Our cancer is either gone or it’s there. The only good outcome is that our cancer is gone and we move on with our lives intact cancer-free.

We feel having cancer means we are on a path to death, and having no detectable cancer means we might have a chance of staying alive. All or nothing.

But I met a woman when I was in chemo who had been receiving chemo weekly for 4 years. She was not cured and she was not dying. She had a tumor that could not be removed surgically, but the tumor had not grown or spread or threatened her life in 4 years. She tolerated chemo well, and aside from living 4 hours of her life weekly in the oncology chemo room, her life was pretty much normal.

I’ve since been in contact with 2 long term appendiceal cancer patients who have never really been cancer free. They have been eight years and twenty years with appendix cancer recurrences. And in the meantime, between treatment, they have valiantly lived their lives. Productive lives. Meaningful lives. Lives that aren’t just about cancer. They have survived in spite of cancer. Raised kids, pursued careers, lived lives…with appendix cancer.

I got to thinking about that. I was in chemo for about 4 hours once a week for many months after I was diagnosed. Not bad, but not how I would have chosen to use my time under other circumstances. But I’m a nurse. For years I’ve seen dialysis patients. Patients who live their lives hooked up to dialysis IV pumps for as long as we are hooked up to chemo pumps….but three days a week…for years. And they live long and productive lives in spite of that. Their lives are altered, but they still live. They still contemplate a future; they tolerate dialysis as they await a possible transplant and a new normal life.

I have now been exposed to many scientists involved in cancer research. They are so close to so many breakthroughs. There may come a day in our lifetime when there is a cancer cure…if we just wait and stay in treatment. Just like dialysis patients remain in treatment while they await a kidney transplant. The day when they can live without being in treatment.

That day that may come for us. The day cancer is defeated.

I want to be here to celebrate that day.

Our Community

admin — Tue, 20 Jul 2010 04:02:06 +0000

I’m feeling very grateful tonight. Grateful that I am part of the cancer community. I am grateful for those of you I’ve met and corresponded with and talked to on the phone. Those I’ve met in person in my community. Just since publishing my web site I’ve communicated with over 220 appendiceal cancer patients. I now know several more diagnosed with other cancers in my community.

But today was an especially great day in that sense. It just happened today that I interacted with a lot of people affected by cancer.

At first, just after I was diagnosed, I was uncomfortable around others battling cancer. It made me feel vulnerable. I wanted to be back in the “before cancer” world, the “normal” world.

But us cancer survivors (all of us alive with a cancer diagnosis or history, even the day after) share some very profound differences from the rest of those around us who haven’t battled cancer. A woman who has never battled cancer commented today that the best defense was a positive attitude. Us cancer survivors who were there knew better…..you can’t be positive all of the time after diagnosis. Sometimes we’ve had to put on a positive front as those around us were sure we’d die if we didn’t stay positive, so we pretended to be positive to make them feel better when we struggled. All of us who’ve dealt with cancer up front and personal have had negative moments, we all admit to times of downright depression. And that’s okay, that’s normal. Please read:

“The Tyranny of Positive Thinking”

from the book “The Human Side of Cancer: Living with Hope, Coping with Uncertainty”, it helped me a lot.

Those of us who have battled cancer also live our lives one day at a time. Most of us who have some time in the battle no longer fear death, so comments from the rest of the world like “I know you’ll have many more years” are really not very meaningful to us. We no longer care about the quantity of our time, we are all about quality and meaning and purpose. My dentist today said I may need dentures in another 15 years. His employee, the cancer survivor, and I looked at each other and smiled when he said that, we both acknowledged his difference in perspective. In some ways, he seemed from another planet. Fifteen years to us has no relevance, we don’t even contemplate a decade from now. She and I just want to raise our kids to adulthood, teeth or no teeth. I’ve almost been alive long enough to see my kids become adults, anything more than that is bonus time. Her kids are younger, she wants to live at least long enough that her kids remember her. We don’t think to even ask for old age or retirement post cancer.

And as we acknowledged our perspectives wordlessly when we looked at each other, I felt so understood.

I was so grateful for a day of being around cancer survivors, grateful that I was part of the cancer community. I was grateful for my new perspectives.

In many ways, cancer is a gift.

When is it Over?

admin — Sun, 18 Jul 2010 17:03:05 +0000

When is it over? I remember having that thought often. I was so psyched to “beat it”, to survive my cancer. When could you officially declare that you’d won the battle and relax? I had always assumed the 5 year mark was the definition of “cured” in the cancer world. Everyone talked about 5 year survival rates like they were the gold standard. If you made if five years weren’t you cured and couldn’t you stop the testing– the CT scans, the x-rays, the tumor markers? Wasn’t the very long and hard battle finally won if you were cancer-free at 5 years?

Then I remember reading somewhere that the term “cure” was no longer used, we were in “long term remission” if we made it to the five year mark. I’d always felt remission to mean you still had cancer, it just wasn’t currently active. We would always in some sense be “cancer patients”. I read an article written by a cancer patient who’d read “long term remission” at 5 years vs. “cure” in a magazine in a doctor’s office. When she’d read that statement, she’d thrown the magazine across the room. I could so relate to how she felt. We want the “cure” word, the guarantee it will never come back, the permission to go back to our normal, before cancer lives. To put it all behind us. But some of the appendiceal cancer specialists feel we should have yearly CT scans for life. For life. Forever. We can never stop being vigilant.

I read a statement by a cancer survivor recently. She said we are like recovered alcoholics, in a sense. And we are. We are no longer actively in cancer treatment, and we may no longer have detectable cancer, but it’s never really over. We will always be on guard, we will always be vigilant. We are all now acutely aware of how rapidly our lives can change, how much we can lose in a very short time. We can’t go back to before cancer when we were more naive, just as a recovered alcoholic can never go back to the days before his first drink. But somewhere between the diagnosis and the recovery we aquire new skills, we deepen our character, we develop new perspectives. We become equipped to help someone else just beginning the journey. Being able to do that kind of makes it all worthwhile.

Connections

admin — Fri, 16 Jul 2010 08:19:55 +0000

I’m sorry I’ve not posted recently. Life gets busy and sometimes it seems there are too many priorities. I’ve been working lots, plus getting ready for the holidays. My todo list has grown…I need to better organize my time! I believe I read that you should post to your blog about 3 times a week….in that sense I am very delinquent.

I follow several other blogs now….blogs of cancer patients. I get worried when they don’t post for a long while. It’s strange, I feel like I know some of the other bloggers as they share so much on-line….so when I know they have cancer and haven’t posted in months, I get worried. I feel a loss when a blog just ends without a goodbye, without an ending. Some who blog know they are terminally ill, and I appreciate it when they’ve shared access to their blog so that we can know when they’ve passed. I should probably share my blog password with my best friend in case of emergency!

The on-line cancer world is a different kind of cancer limbo sometimes. Cancer blog limbo. Electronic relationship limbo. Internet forum limbo.

I’ve been thinking lately. I’ve communicated electronically with about 500 appendiceal cancer patients since publishing my web site. I have been able to meet two patients I’ve met electronically in person, and it was so great to do that. I met one recently in Washington DC. We had breakfast together and talked for hours. Appendiceal cancer patients kind of feel like family to me now, we share a lot. I also love the cancer survivors I’ve been able to meet at conferences via the Scientist-Survivor program. We share a history, and just like history binds family members, it binds cancer patients. We connect.

In the world of email and Facebook and cell phones and text messaging, we communicate a lot more now, I think, but I wonder about the quality of our wireless communication. Now what I’ve really come to treasure is realtime personal connections, complete with body language and facial expressions. Sometimes for me electronic communication is like seeing a photo of an oak tree vs. feeling the roughness of its bark, touching the tree’s leathery leaves, smelling the woody smell and hearing the wind rustle through it’s branches. The picture isn’t the tree. I much prefer connecting like I did yesterday with a new friend over breakfast, we shared a couple of hours of great conversation about things that matter, complete with body language and facial expressions and “vibes”.

In a strange kind of coincidence, a columnist for our local paper recently published a book, I think his first book, “Connections”. I like the columnist and regularly read his column (and blog). I met him when he came to our soup kitchen last year twice. The premise of his book as stated on the book’s web site is: “This primal need – which is not only timely, but timeless – is our original wireless connection, with face to face value and eye to eye contact. No need for Blackberry batteries, a strong cell phone signal, or a laptop computer.”

When I read that on his book’s website, the premise “connected” with me, so I ordered the book. I’ve recently come to truly value that “original wireless connection”, so the book was timely in my world as I’m truly feeling the limitations of “electronic” connections lately. I’ve wondered if it was just me or if others feel the same in this new world of wireless communication? I’m looking forward to reading the book.

I took some time to really look at the book’s website after I ordered the book. Guess what, I’m in the book. On the web site, the link to the book excerpt is about me… me who feels sometimes disconnected lately in this electronic age. I hadn’t known that when I ordered the book. Kind of ironic.

Another kind of irony I’ve witnessed in the cancer community is that very few of us want to join support groups, but all of us love to communicate with each other. Sometimes those who love us but who have never had cancer in some ways can’t understand us. We find we cherish connecting with others in our family of cancer survivors.

Lately I’ve been thinking about planning a real time get-together for appendiceal cancer patients I’ve communicated electronically who live in my general area, about a 100 mile radius. There are 4 or 5 of us. I also want to start a real time empowerment group, not a “support group” for cancer patients at my large local oncology practice. Realtime empowering connections for cancer patients.

I think electronic communication serves a purpose, but we cancer survivors need to connect in a real sense sometimes.

Cigarette Tax

admin — Tue, 13 Jul 2010 22:37:30 +0000

In Indiana legislation recently went into effect increasing the tax on cigarettes 44 cents per pack. I actually was part of a group that lobbied for the tax increase with the American Cancer Society, though we’d requested a $1 per pack increase. I actually went to my state capitol and spoke to my state legislators.

They say that cost is the biggest deterrent to kids acquiring the habit. I’m sure that’s true. My teenage kids would have trouble parting with the $5 or more a pack in some states. I don’t want my kids to ever smoke. They say now that 30% of all cancers are smoking related. Smoking is related to more than just lung cancer. More cancers get added to the list all of the time; pancreatic, colon, bladder, kidney… I don’t want my kids to ever have a cancer diagnosis.

Maybe my own cancer was a result of my former smoking habit.

Yes, I smoked, for many years. I started smoking when I was 15. And for a long while I lived with the guilt of knowing that maybe I caused my own cancer. Maybe I was responsible for all of the grief (and expense) my diagnosis caused my husband, kids, friends and extended family. I quit almost 5 years ago, but remember, I’m a 6 year survivor. I smoked for a year after my diagnosis, and hated that I was so addicted that I couldn’t quit even as I fought for my life. I’m ashamed to admit that here. I’ve read that only 50% of cancer patients who smoke give up the habit. Go figure.

Smoking truly is an addiction, nothing more. Nothing about smoking has the physical effect of relieving stress except for the slow deep breaths you take when you take a drag (and the relief from the withdrawal you feel when you aren’t smoking). I was so addicted I even rationalized smoking….”chemo, barium and x-rays are carcinogenic, so I’m going to at least choose one of my carcinogens”. How is that for twisted logic? I was terrified as I smoked, thinking I was making cancer cells grow, but I failed time after time when I tried to quit.

I did finally quit; cold turkey was the only way for me. I didn’t succeed using patches or gum, though I tried them. I’m sure I tried to quit hundreds of times before I succeeded. In hindsight, smoking was much more stressful for me than not smoking. I love the freedom of not being an addict. Part of what helped me quit was the “Freedom From Smoking” online program sponsored buy the American Lung Association:

http://www.lungusa.org/site/apps/kb/home/login.asp?c=dvLUK9O0E&b=38973

I’m grateful that my kids now abhor cigarettes and cigarette smoke. I’m glad in this day and age my teens don’t see smokers as “cool”, they see them as “losers”. I’m glad cigarettes are expensive. I’m glad there are more smoke-free places to protect my kids. My kids want all restaurants and public places to become smoke free- my eldest made me laugh when we went to a restaurant the other day- she said a smoking section in a restaurant was “like a peeing section in a pool”. We had smoking rooms in the house and didn’t smoke around our kids, but in hindsight, maybe we didn’t protect them enough. They say if kids don’t start smoking as teens, there is a good chance they will never smoke. We are almost there.

I just don’t want my kids to ever have a cancer diagnosis.

Things we have in common….

admin — Tue, 13 Jul 2010 15:17:34 +0000

I’ve been a part of the community of cancer patients for 8 years now. I’ve communicated with hundreds of cancer patients via my web site, cancer survivor events, conferences, walks. I’ve noticed common themes arise in the cancer community. Things I thought were unique to my experience are not.

Life is different for all of us after cancer. We don’t finish treatment, enter remission and go back to our old lives. Cancer changes us forever. A new friend who is also an 8 year survivor of advanced cancer told me a day doesn’t go by that cancer does not enter her mind. Mine either. Cancer is in our thoughts every day after we are diagnosed, even years down the road. I communicate with cancer patients daily, so I will always be in the cancer world, but I noticed after I finished cancer treatment and before I became an advocate that I thought of cancer every day even when I tried not to. Life after cancer was not what I expected it to be…cancer isn’t something you leave behind; you take the experience with you everywhere you go for the rest of your life. Your life becomes divided into “before cancer” and “after cancer”. Interesting, I’ve had a few 20 year appendix cancer survivors write me after finding my web site. Two decades later, they are Googling appendix cancer.

I’ve noticed many of us have a great need to find purpose in our lives. After cancer treatment, I became obsessed with finding a purpose for my existance. I read a bazillion books on finding your life purpose. I’d actually had been looking for possible new career paths and thinking about my purpose before my diagnosis. Searching for purpose is also a middle age thing, but since most of us with appendix cancer are diagnosed at middle age, I think our quest for purpose becomes compounded. Sometimes it almost seems we feel a need to feel worthy of our survival, to earn the right to remain cancer-free, to stay alive. Kind of funny, but before cancer I didn’t feel such a great need to be worthy of being alive, I don’t think. I was a good person, but I took being alive and planning a future for granted. It’s kind of ironic that I didn’t appreciate being cancer free before I was diagnosed with cancer. I should have.

I’ve also noticed that after cancer most of us place much less value in our careers. After cancer we go back to work, but it’s not the same. Before cancer our careers defined us, gave us value. But after cancer, they aren’t quite so important, they fall short, they often aren’t enough. Our values have changed. Now for me my nursing career has become almost a side job, my purpose is more about the things I don’t get paid to do.

We also become much more spiritual. For me spirituality is not the same as religion.
I was always more spiritual than religious, but now I spend more time asking bigger and more profound questions about time and life. Simple and pat answers aren’t enough anymore. I do a lot more exploring, a lot more searching, a lot more wondering. In a spiritual sense, I have become more open-minded, more accepting of wonder. I’m much more into the big picture now, less into the small details.

We also learn to value quality over quantity. We all want more time, but we want it to be time we can use to live well. We’ve learned from being in the cancer community that living longer is not always better. We’ve all lost friends and are grateful when their suffering is finally over. But whenever we’ve lost someone, we’ve wondered, just for a bit, if we might be next.

poignant and powerful

admin — Tue, 13 Jul 2010 11:19:02 +0000

This past week end, I attended my niece’s 13th birthday party. It was a really big deal (over 100 guests in attendance), with great food and a DJ. We all had a great time.

I spend a little time on the dance floor (when the era was right. Music from the 60s to the 80s tends to call my name). At one point I noticed my spouse looking over at us rather intently. When I asked him later he told me that he was having a “poignant moment.”

We were three strong women, all mothers, all activists in our own way and all at different stages of cancer survivorship. And we were tearing up the dance floor. We were smoking (if I do say so myself) and not just as cancer patients, not just as women over 40. We were three women who loved to dance and who were having a great time.

I remember thinking, I really love dancing with these women. And when I was on the dance floor, I didn’t think of cancer at all.

Grieving the loss of “Normal”

admin — Mon, 12 Jul 2010 19:50:11 +0000

In 1969 Elizabeth Kubler-Ross published her classic book, “On Death and Dying”. I was required to read it as a class assignment in nursing school. The book outlined the five stages of grief and loss of someone who is dying. In later years, these stages of grief and loss became known to be associated with other types of loss.

I talk to so many who tell me that the day of their cancer diagnosis was the day their “normal” life ended. I’ve recognized these same stages as we grieve the loss of our “normal” lives after a cancer diagnosis. I think many of us have gone through these stages as we’ve relinquished our before-cancer normal lives. I know I did.

• Denial and isolation: “This is not happening to me.” We feel detached, we can’t assimilate the reality that we are now cancer patients. It was so unreal the first time I sat in an oncologist’s waiting room knowing that though I felt great, I was now a “cancer patient”. I was a cancer patient just like the bald person across the room. Just like the very thin and sick-looking person across the room. I was one of them, a cancer patient.

• Anger: “How dare God do this to me.” I never felt “Why me?”, but I was angry sometimes that people I knew who abused their bodies, were abusive to other people and who were just plain mean lived to old age without having any severe illness threaten their lives. And I knew good, faithful and God-honoring people who died of cancer and abandoned their children. I saw kids with cancer. I was angry at the unfairness of it all, the injustice.

• Bargaining: I’ll eat right, I’ll do chemotherapy, I’ll do surgery, I’ll quit smoking, I’ll exercise…just let me live long enough to raise my kids. I just want to see them graduate from high school.

•Depression: I am so sad, I feel horrible at the pain and worry I am causing those I love, I’m afraid of the future, I’m afraid of tomorrow. I’m so sad.

•Acceptance: I’m here now, at acceptance, but it was a very long and hard road. And I guess since I’ve almost achieved what I’d “bargained” for, maybe it’s easier for me than for others. I’ve been in the cancer community for over 6 years now. It can be a place of brutal reality, of fear, of sadness, of anxiety. But I truly accept now that there is a purpose for all things, even the bad things. I accept that every day is a gift and that none of us are promised tomorrow. I accept that we need to make today count. I accept that God’s answer is “no” to many prayers. I accept that there is much I don’t and can’t know from my perspective in this here and now.

But I feel with certainty that this here and now is not all that there is. I know there is much more beyond this life. I accept my life as tentative in this realm, but I know this is not the only realm. I accept all of the grief and goodness this life has to offer, but I anticipate another reality after this one where we are whole, where we can understand, where everything makes sense, where there is no grief. And now I very much look forward to that reality. For me that is the greater hope…greater than the hope of surviving my cancer.

writings

admin — Mon, 12 Jul 2010 06:42:22 +0000

oday marks a new start for two online cancer forums. Real Cancer, Real Lives has moved to a biweekly schedule, due to recent lack of submissions. Minerva’s hosting this week’s carnival. Please check it out, and consider writing or hosting if you have anything to say on the matter.

Also, today marks the beta site launch of BlogHer, a community network of women bloggers from all around the globe. As a Health and Wellness contributing editor, I hope to bring the issues that cancer survivors and their caregivers face, as well as the sacrifices that they make, to a greater audience. Increasing (and sometimes correcting) public knowledge and perceptions about cancer has become greatly important to me. Sometimes, it’s the only way that I can make sense out of what’s happened.

Finally, I have gotten around to reading Lance Armstrong’s biography, “It’s not About the Bike: My Journey Back to Life.” And I can honestly say that I’m not that impressed. Yes, he had advanced cancer and a long, hard slog to overcome it. He’s done a lot to raise awareness through his philanthropic organization, and has even spoken to Congress about how the needs of cancer patients and survivors could be better met. He is to be commended for this. But in reading this book, I see example upon example of why he shouldn’t be held up as the golden example of young cancer survivorship. Despite detecting abnormal medical signals six months before he finally saw a doctor, he waited until he could barely sit on his bike and was coughing up blood until he sought treatment. At the time of diagnosis, he was making $2 million/year and had a lovely home and various accoutrements that the average person just doesn’t have. He had doctors fighting over who got to treat him. After his initial surgery, Lance was rude to his nurses and didn’t listen to his doctors’ advice (personal sidenote to Mr. Armstong: If you insist upon riding a bike when your red cell count is only 7,000, you’re going to pass out on the side of the road. It doesn’t matter how strong your muscles are, if there aren’t any red cells to transport the oxygen to them, you’re gonna pass out! Listen to your doctors, dammit, and REST!)

I’m not even finished with the book yet and it’s already made me more determined than ever to put the “real story” out there. Every cancer patient’s story is different…but can a millionaire professional athlete who doesn’t listen to his docs be the best spokesperson for the young adult cancer experience? I really don’t think so…

Cancer Community Wisdom

admin — Sat, 10 Jul 2010 16:32:19 +0000

I communicate with many cancer patients now as a result of having been in the cancer world for several years. I so appreciated the wisdom that fellow patients have articulated and sent my way this week.

One has coined a word for the anxiety of follow-up cancer scans: Scanxiety. A perfect word! Everyone copes with it differently, but we all have “scanxiety”.

Another friend who lives in the cancer remission world told me “I never realized how tough it was to LIVE with a cancer diagnosis”. She is a medical professional and has been around dying cancer patients, so she understood that part of it. She understood dying of cancer. But it never occurred to her, until she had to do it, how tough it was to live with a cancer diagnosis.

It’s the living in limbo that’s is so tough, even when the limbo lasts for many years. One cancer patient told me, and I’ve heard this expressed by other cancer patients, that sometimes they think hearing the cancer was back would be easier. At least they would know they could expect a shortened life and plan accordingly. They could finally quit waiting for the other shoe to drop. The waiting and wondering and feeling vulnerable would be over. But then that thought triggers guilt at not feeling grateful for still being alive when so many others have lost their battle with the disease.

We kind of miss the days when we didn’t live with the fear of dying, or on the flip side, when we didn’t have to feel guilty if we ever seemed ungrateful for a single day that we are still alive.

There’s a story that has been used to describe what cancer survivors feel, especially around testing time. It is called Damocoles Syndrome, based on the myth of The Sword of Damocoles:

http://www.geocities.com/Hollywood/2549/damocles.html

A fellow cancer survivor said this about even good results: “It’s like you get a reprieve and can go on pretending to have a normal life again for a while…until the next cause for concern hits.”

This time was a little bit worse for me…..my husband, who has been my number one support person throughout it all, is also nurse. I get my scans done at the hospital where he works. I told him I was anxious about my scan results after waiting about 36 hours, so he told me as soon as he got to work he’d pull my scans up on the computer and call the results to me.

He never called.

Well, in my cancer survivor mind it had to be because the scan results were bad this time (remember I had a slightly elevated CEA) so he didn’t call because couldn’t tell me over the phone. Maybe the scans hadn’t been read so weren’t available yet, but then he wouldn’t he call me and tell me that, wouldn’t he?

On the off chance that he’d just forgotten to get my results, I finally called him right before his shift was over after eight hours of thinking the worst….if the results were bad I’d know within an hour anyway, so I had nothing to lose. And I would have hated to find out he’d forgotten and to have to wait another 24 hours for results.

Turned out he HAD forgotten to pull up the results and did as soon as I called him…..and they were fine. He didn’t understand scanxiety.

Now I can live kind of normally, until next time.

Health | Mesothelioma | Cancer » Cancer Patients

All or nothing?

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