lung-cancer-memeLung Cancer Awareness Month is over. Or is it…?

It’s been some time now since I had that ah-ha moment where I realized I was indeed an advocate. And to be honest, it’s been a hard road.  When I first started writing, it was all about me, my family and how at times, things were just unfair. No one saw Jillian as the face of lung cancer. In part because there were and are so many like her—how do you decide on whose face is THE face? I wanted to tell people that to judge her by her diagnosis was wrong. But changing people’s minds is not an easy task—and you have to have a certain skillset to teach them without undermining your message. It doesn’t matter how you got this terrible disease. It matters how you receive the quality, compassionate and life-saving treatment that matters. I used to say the following that I had seen or heard some other time:

When a woman says she has breast cancer the reaction is: Oh no.

When a man says he has prostate cancer the reaction is: I’m so sorry.

But when a person says they have lung cancer the reaction is: Did you smoke?

ros-friendTo that end, I learned to turn around their question/statement to “Can I ask you why you asked that?” moment. It goes back to that nagging stigma that so many of us are trying to change. But there again, for a very long time I was even a part of that thinking in terms of let’s not talk or focus on the smokers, past or present, let’s focus on “people like Jillian.” Boy, was I wrong! We, the lung cancer community, should not do what we ask, implore, others not to do and that is judge us. We should not discriminate against those we are advocating for.

In that realization comes enlightenment. I’m advocating for all lung cancer patients, caregivers and families. I know that now. Since Jillian, so much change has happened. New drugs have come to market from clinical trials. And that is so exciting…to be honest it’s still a little bittersweet though. But let’s take a quick look at some of the latest breaking news. Recent drug approvals have been for Keytruda, Tecentriq, Opdivo, Tagrisso, Xalkori and Alimta. As of October 2016, Alecensa was granted breakthrough therapy by the FDA. I know these drug names mean life-saving and quality-of-life therapies. But to so many of us it’s all Greek. I’ll try to break it down for you as best I can, because their complete drug names are even more confusing.

ros-chrisThis is lung cancer advancement for dummies, simplified as taken from the November issue of the International Association for the Study of Lung Cancer, V1/N4:

pembrolizumab is Keytruda – used for NSCLC patients whose tumors express the PD-L1 mutation with no EGFR or ALK genomic aberrations. Huh?

atezolizumab is Tecentriq – for patients with metastatic NSCLS who had disease progression during or after a platinum chemotherapy regime.

Did I mention Tarceva? That is erlotinib – limited to patients with EGFR mutations.

nivolumab is Opdivo – used for patients where the disease has progressed after chemo.

osimertinib is Tagrisso – used as a second-line option in patients with EGFR.

crizotinib is Xalkori – used for treatment for patients with the ROS1 mutation.

pemetrexed is Alimta – now approved for use after four cycles of Alimta with cisplatin as a stand-alone therapy for maintenance.

Lastly is alectinib, which is Alecensa the latest drug with FDA approval for first-line treatment for patients with ALK inhibitor.

ros-friend2Now you understand—it’s all Greek! And putting it all together the with major known gene mutations, protein inhibitors, immunotherapy options…you need to carry a medical and Webster’s Dictionary with you at all times!

Besides the drugs now available, more research is being done at light speed. The Bonnie Addario Lung Cancer Foundation is moving forward with their study to understand why people like Jillian got lung cancer. Other major research universities are looking at and making progress thinking outside the box. I met with a few earlier this month at Moffitt Cancer Center here in Tampa. They talked about crossing the lines between cancers—using a drug that has been approved in another cancer to see if, when combined with a approved lung cancer drug it will combat the cells resistance and turn it off or on depending on the case.  I hope that this kind of thinking and researching is part of the Moonshot and that it continues.

Now for the hardest part of being an advocate for me, are survivors. Jillian was a survivor, even though she didn’t like that term. A part of me still has mixed feelings—survivors are people who are still here, now, in the present. But I’ve come to see them, many whom I call friends, in a different light. They are the strength and core of our advocacy. They are the reason to continue to fight.  When I was doing the breast cancer walks, more than half of the women I walked with were survivors—they had been diagnosed, treated and were still here. That’s why people donated money—there were survivors and they knew their money would help.  I never made that same association with lung cancer, don’t ask why. Today, I know. For me, it was too current, raw and painful to admit that people survived with lung cancer. Today, it’s vital that we start shouting it, saying it, applauding our survivors, many who go from clinical trial to trial. But they are here. And in order to keep the momentum going and growing, we need to share their success, keep supporting and cheering them.  So while November and this year’s Lung Cancer Awareness Month is over, we’re not. Lung cancer awareness happens every day, every month. We need to share and change the message. Anyone can get lung cancer.

Stronger than lung cancer,

Ros Miller

Successfully living with a chronic disease like CLL requires waging the fight at a lot of different levels.  Organizations such as Patient Power, CLLPAG, LLS and others provide information, resources and other support.  Medical, nutritional and therapeutic aspects are addressed by our healthcare teams.  I am also fortunate to train under a former Olympic cyclist turned sports physiologist who keeps me physically fit.

However, these are only part of the community network needed to contend with chronic disease.  With the holiday season right around the corner, many of us will be spending time with friends and family in the upcoming weeks. Family and friends are another important component with as much giving as drawing emotional and spiritual support.

As an appetizer of sorts, I went home recently to spend time with family and to attend my Aunt Tillie’s 90th birthday.  It was a great visit with my parents, sisters and “cousins.”   In actuality, neither Aunt Tillie nor my Aunt Sis are, or were, relatives but were parents in many other respects.

Growing up, I really had three sets of parents and siblings in what amounted to an extended family.  Regrettably, Aunt Sis passed away earlier this year, and it was really important to get back home for Tillie’s birthday.

These women, their husbands and families, as well as mine and others, were part of an incredibly tight-knit group of lifelong friends.   Although in a modern city, this group really defined the best of being in a shtetlShtetl’s were small towns in Eastern Europe where the community really took care of their own.

For example, as a kid in this modern day equivalent, I would often knock on Aunt Sis’s door across the street or Aunt Tillie’s house a few blocks away, head straight for their refrigerators, and generally hang out.  Their kids were routinely in our house doing the same, typically raiding my family’s legendary cookie drawer.

Another funny example was when my future wife came home to meet my parents for the first time. This would be stressful in the best of circumstances.  When we pulled up to my parents’ house, cars were parked up and down the block. I had forgotten to tell her that my parents were having a “small” holiday party involving maybe 90 or 100 people!  Ooops, bad C.J. In the evening’s chaos, Tillie and Sis were among the first to greet and make her feel welcome.

Similarly, Tillie’s birthday was a day-long affair ending with a smaller evening event back at her place.  True to form, the “small” party involved about 40 “cousins,“ siblings and kids packing into a two bedroom apartment with food everywhere.  Some things just don’t change!

Although CLL came up in various conversations, it was a passing detail rather than a central theme.  Although my physical health has been relatively stable, I sorely needed to be with people who know me just as C.J., and not some random person who has chronic, incurable cancer

All of this highlights the importance of community in general, and particularly when dealing with a chronic disease.   When you are in a community, you don’t feel alone, and the collective experience of others helps you deal with things.

Please share how “community” has helped or enabled you in your fight against cancer and chronic disease.   Your posts and comments really do help and inform others.

I hope all of you have a great holiday season!

Thank you for reading!

Always hope. Never quit.

–           C.J. Chris

london-lung-cancer-groupI always knew there were patients and caregivers from outside the U.S. who took a look at our programs on Patient Power. But it’s only been recently that I’ve fully understood what a difference we are making worldwide, and it’s thrilling!

Patient Power now has members of our communities from almost every country. That, quite frankly, blew me away, and it underscores how vital it is to bring patients the latest news for their condition—wherever they are.

london-lung-cancer-group2A couple of weeks ago, I actually got to meet folks like this, far from where I live in California, who depend upon Patient Power for “knowledge, confidence and hope.”  I spent a day with four of our UK lung cancer members and two of their care partners. It meant so much to me to be with them as part of a day-long workshop and to hear that Patient Power had made a real difference for them in putting them more in control of their journey with a serious illness. Now these folks are my pals and they had great ideas of how we, and partners, could improve our offerings.

london-lung-cancer-group3We know we have much work to do to make our programs and discussion more accessible worldwide. So, before long, we will integrate programs we already have on patientpower.eu, and new ones we produce, in multiple languages: French, German, Italian, Spanish and more. Maybe even Greek! That way a much wider group of patients can take advantage of the latest news for their health concern in an easy-to-understand way.

It was such great fun to meet our Patient Power members in London. I get a big charge out of meeting people who rely on us wherever I go, so please don’t hesitate to write us. Next stop for me is the big ASH (American Society of Hematology) meeting here in San Diego and then some time off. Anyone in Santa Fe, New Mexico?

london-lung-cancer-group4Whether it’s London or New Mexico, Athens or Sao Paolo we want to hear your story, provide you actionable information, and help you have the best care.

Wishing you and your family the best of health—wherever you are!

Andrew

 

guilt-and-healthGuilt is defined by Webster’s Dictionary as a feeling of responsibility or remorse for some offense, crime, wrong, etc., whether real or imagined. Guilt is a very powerful emotion. It can destroy your spirit, and it can destroy your soul. It eats away at you like a cancer itself, causing you to get physically and/or emotionally sick. It doesn’t matter if the guilt is real or imagined. The results are the same. And they are rarely positive.

There are several reasons for guilt: something you did wrong; something you should’ve done but didn’t; something you didn’t do, but want to; something you think you did wrong; thinking you didn’t do enough to help someone; thinking you’re doing better than someone else. No matter what the cause, guilt is exhausting and drains you emotionally and spiritually, ultimately making you a less effective care partner.

Who feels guilt? Only people with a conscience feel guilt. So if you’re feeling guilty, congratulations! It means you’re a decent human being! You know the difference between right from wrong and as such, experience a sense of responsibility or remorse when you take the wrong path, when you cause harm to another person, when you damage another person’s property, make somebody feel badly, or cause pain to another human being or animal. It’s not uncommon to feel guilt when you feel that someone else has been treated unfairly or is having a rough time while things are terrific with you. Is it guilt about the other person’s situation, or is it guilt perhaps because subconsciously you feel happy that it’s their misfortune and not yours?

When my 31-year-old sister’s husband died of colon cancer at the age of 33, I remember my parents saying that the only thing that could be worse was if my sister had died. They didn’t feel guilt about saying that. It was a perceived relief that it was their son-in-law rather than their daughter who died. Should they have felt guilt? While they felt excrutiating grief and remorsel that he died, they didn’t feel responsible. And that is the key. One can certainly feel remorseful without feeling responsible when bad things happen to other people—especially when those bad things happen to people that you care about.

When you assume the role of care partner, you take on a huge responsibility. It’s not always something you bargained for, nor is it something you could ever have predicted. But guilt should not be part of that job description. It’s not your fault that your loved one is sick. You didn’t do anything to make them sick. You know it’s due to circumstances beyond your control and beyond your own – or anyone else’s – capabilities to make it better. Whether out of love or out of obligation, you assume the role of caregiver and do your best to make it work. Oftentimes, you know it’s not going to be a pretty or happy ending. But you persevere in the task because you want the best for your loved one. With your loved one’s best interest at heart, you plunge forward, day after day, trying to make each day count, usually putting your loved one’s needs before your own. You persevere even at the risk of sacrificing your own needs and your own well-being.

You work hard, physically and emotionally. You sacrifice: your job, your own life, your family your friends, your health. Your heart is in the right place. You try to do the right thing. You feel your loved one’s pain and empathize with their suffering. So why should you feel guilt? What is the rationale for it? Aren’t you suffering enough? Why add guilt to your own pain? If you read my October blog, I talked about setting boundaries. I talked about how important it is to recognize your own physical, emotional and spiritual needs, so you can sustain your own wellness in order to be an effective care partner. Setting boundaries by identifying those tasks that you are unable or unwilling to do for your loved one is a major step in helping you meet your own needs. You should not feel guilt about orchestrating ways to meet your own needs while caring for your ailing loved one. It’s okay to have someone else come into your home to help out. You should not feel guilt if you go out for a haircut or a massage, or catch a movie with a friend. You must do what you need to do to survive. It’s not your fault that your loved one is sick. If you could, you’d make them well. If you could, you’d kiss all their pain away. Oftentimes, you’d switch places with them to give them back their life, especially if you’re a caregiver for a child.

Guilt is a complex emotion. It can overpower you. Gnaw away at your soul. Cause inertia. Grow like a cancer, itself, causing bitterness, anger, hostility and even hatred. You must identify it. Accept it. Overcome it. If guilt looms in your heart, you must recognize it and deal with it in a proactive way. If you’re feeling guilt, how does it affect your relationship with your loved one? Can you have a meaningful conversation with your loved one about your feelings? Perhaps your loved one couldn’t care less about the very things you’re feeling guilty about. Wouldn’t that be wonderful?! You’d immediately be relieved of your guilt!

What should you do if you realize that you harbor feelings of guilt? Seek out professional help. Seek out the support of other care partners to validate your feelings and know it’s normal to feel this way. Realize that although normal, guilt is not a positive emotion. It breeds discontent. It will make you miserable and angry. It is counterproductive and will adversely affect the care you provide as care partner. You’ll grow to resent your loved one. This is not a good thing.

Look for something positive in each day even if some days you might have to look a little harder.

May your week be filled with good thoughts, kind people and happy moments,

Lorrie Klemons, RN, MSN

Care Partner Advocate, Patient Action Educator/Advocate/Speaker

Co-Founder, PatientAction.com,

Patient Power Care Partner Guest Contributor

When we hear the dreaded words “You have cancer,” life seems to fall apart. It is one of the toughest and scariest diagnoses to hear. Despite the advancement in medicine, it feels like you were given a death sentence. Hearing you have cancer does not only affect the patient, it is a blow to the […]

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Rebecca recently interviewed her doctor, leading breast cancer expert Dr. Julie Gralow, about the BRCA gene mutation genes and emerging research that is providing hope for more effective treatment options. I wear a pink ribbon on my foot. It’s a tattoo actually. I have a total of three (tattoos)—one on my foot and two on […]

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Being a care partner is one of the most physically, emotionally and spiritually draining roles you will ever play. It is a 24/7 job that is oftentimes thankless and without much external reward. You have to dig really deep into your soul to be able to face the challenges, day after day. It seems like […]

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[Editor’s Note: Cherie Rineker is the author of A Pilgrimage Without End, How Cancer Healed My Broken Heart. Cherie has pledged $1,000,000 to multiple myeloma research when 1,000,000 copies of her book have sold. To purchase a signed copy, visit http://www.cherierineker.com.] Cancer gave me the gift of realizing how precious and wonderful this life is, with […]

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[Editor’s Note: Cherie Rineker is the author of A Pilgrimage Without End, How Cancer Healed My Broken Heart. Cherie has pledged $1,000,000 to multiple myeloma research when one million copies of her book have sold. To purchase a signed copy, visit http://www.cherierineker.com.] Allow me to explain why I believe my story stands out from other stories […]

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Have you ever considered participating in a clinical trial? If you haven’t, you are in the majority. In fact, according to Patient Advocate Foundation,“ less than 5 percent of adults diagnosed with cancer each year will get treated through enrollment in a clinical trial.” I find this stat extremely sad for two reasons. The first […]

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