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Sometimes, HOPE is a kitten. Okay, okay, sure, I know, that sounds a little weird. And a little bit like a desperate attempt to pass a poetry exam. Let me explain… Hope is strong and confident. Hope can be fickle. Hope can be hard to corral, name, and predict. Hope can be ephemeral, and hope is also everlasting. Hope can be full of contradictions. Hope can take many forms, directions, shapes, and sizes. You’ve heard the expression “herding cats?” Hope is one thing that cannot be herded. It is inspired, it cannot be forced, and it is felt differently by different people. And hope, like most emotions we encounter after lung cancer has entered our lives, can have a complicated duality. An ambivalence. A way of being prickly when it doesn’t fit in our hearts, and a way of busting our hearts wide open. A way of showing up without telling us why it’s there, and staying with us, warm and fuzzy and comfortable and soft, exactly when we need it most. And that duality and ambivalence is essential to its nature. It isn’t going away. …Okay. You get it. Hope is like a kitten. I’ve gotten just about everything I can from that analogy! But, that’s not entirely what I mean. Let me explain (some more). Let me show my hand. By way of update: My mom is one of the people for whom I am a “caregiver.” She has been living with Stage IV NSCLC for a little over three years now. She was on a clinical trial of an immunotherapy medication for just over two years. She’s coming up on a year of having not been on any active treatment. She left the trial by choice, after experiencing some vague side effects that were determined to be likely due to the treatment (more on that another time). She is exhausted every moment of every day, to some extent. This woman who was always the most productive, vital, “type-A,” energetic soul I had ever met is now essentially housebound. Her profound lack of vim and vigor is the antithesis of her identity, and it has left her feeling robbed. Some days she feels like going out to lunch or running one errand; but there are usually weeks between these good days. (Side note: we have long made her medical team aware of her severe fatigue, and it was determined to likely be a result of her treatment. Because every patient and every situation is different, please always make your loved one’s medical team aware of every side effect that is experienced, especially when these interfere with your person’s quality of life!) So, with these long hard days of being stuck at home, not feeling like herself, one might imagine that she would feel glum, and downtrodden, and defeated. The answer is: of course she does! She’s human! (Trick question, with a trick answer…) See, the thing is, that isn’t ALL she feels. Nope. Lately, despite choosing to not be on treatment, and despite being overwhelmed in the way that only a very tired person who has gone through a lot can feel (I know you all understand), she has also felt…hopeful. Which reminds me: She woke up a couple days ago wanting kittens. You heard me. KITTENS. She wanted kittens in the house. Kittens. Baby cats. Catlings. Cat blossoms. Cat kids. Cat puppies. We currently have two grown cats. We worship the ground they walk on. We have had both cats and dogs in the past. Pet adoption is an important cause to us, and we tend to make a new addition to the family every 5-8 years. Following our normal timeline, we have talked about adopting kittens a few times since mom’s diagnosis in 2015. But, 10x/10, she has decided against the idea, once even as I was literally walking out the door to head to the shelter. She has been on a scale somewhere between hesitant and heartbroken each time, and each time because she did not feel she could handle the joy that a new pet brings. Let me repeat that: she felt she could not handle, or did not want to welcome, the particular joy that a new pet brings. The joy of a new pet is like Spring: It’s promise. It’s a belief in a tomorrow. It’s hope. Disclaimer, because I feel I have to make one: the decision to adopt a pet is a serious one, and should not be made lightly. We are very experienced cat owners, and we have gone through the cat-to-kitten introduction process many times over the years. In a caregiving situation, pet care should be particularly deliberately and honestly discussed, since caregivers may or may not have the ability or desire to assume those responsibilities. But, in our case, that situation could not be more perfect. I mostly live with my folks as part of my effort to help out, so I am around (and, let’s face it, more than willing) to contribute my part to Project KittenHope. At the end of the day, the kittens will become part of the whole family, owned and loved by all of us. When my mom declared that the haze had lifted and that she was ready to take this step, it was an automatic victory. It was a sign. It was hope. Thus: this week, into our lives walked a two-month old little girl cat and a two-month old little boy cat. And, yet, those of you who are here reading this understand, not needing any disclaimer. Because -----------------------------------------------------------------------------------------------*- …one of the kittens just typed that. As I was saying: because you understand this daily tug of war, seeking and understanding hope. So, the past few days, while welcoming our new additions, I have literally been herding cats…and herding hope. It appears where it will, often when least expected, and gives its gift of easy breathing and lifted hearts. Just like the kittens. This past weekend, LUNGevity hosted their National HOPE Summit in Washington, D.C.: an annual gathering of lung cancer survivors and co-survivors (caregivers!) that is regularly the largest such meeting in the country. It is part family reunion, part medical conference, and part survivorship bootcamp: fellowship with folks who understand what the lung cancer experience feels like; experts who inform the crowd on the most cutting edge treatment and diagnostic research; and tips and tricks for living one’s best life as a lung cancer survivor or caregiver. The event leaves everyone enlightened, invigorated, and aware of information and tactics that can introduce HOPE where there may have been none. Thanks to the LUNGevity Foundation, May is officially National Lung Cancer Hope Month. We HOPE (see what I did there?) that you will join us every day this month in ongoing conversations about all the HOPE that is out there in the lung cancer field: new diagnostic tests, new medications, new genetic sequencing, new surgeries, new forms of radiotherapy, new places to turn for assistance, new clinical trials, new emphases on patient navigation, and more. (See LUNGevity.org for more of this. Seriously, it seems there is breaking news every day!) We also HOPE that you will share with us those moments, long and brief and in-between, that give YOU hope, inspiration, and a reminder of why we wake up every day to advocate for patients: for new treatments, for access to help, for better resources, for more information, and—as LUNGevity says--for a world where nobody dies of lung cancer.- 2 comments
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Hello, my friends! I HOPE, wherever you are, that you are having a beautiful Spring! I HOPE, whatever you are up against, that you are finding support and peace in your endeavors. I HOPE, however you need, that you are finding the time to create room for yourself in your busy schedule. I HOPE, above all, that you and yours are doing well. Thanks to #LUNGevity, May is officially “Lung Cancer HOPE Month.” This particular awareness campaign places a much-needed focus on all there is to be HOPEful about in the #lungcancer world. To that end, we will be talking frequently this month about what HOPE looks like; what it feels like; what it means to you and to your loved ones involved in this lung cancer experience. Also: I had the extreme honor of attending LUNGevity’s national HOPE Summit this past weekend. For the first time, the Summit featured a separate day of sessions designed for Caregivers: the “COPE” Summit. My suitcase is still in the hall; I am still sore, sleepy, and overwhelmed: in the MOST productive and phenomenal way possible! If you have not yet attended a regional or national HOPE Summit, I could not possibly recommend it more wholeheartedly. The experience is hard to explain, other than saying it is a near-necessity for anyone touched by lung cancer: there is nothing more uplifting than being surrounded by fellow survivors, Caregivers, experts, and researchers who are ALL working through the same difficulties to reach the same goals. The sense of community is intoxicating, and the sense of forward progress in policy and knowledge is inspiring. It is part conference, part congregation, part school, part party, part reunion, part group therapy, and ALL heart. Thank-you, LUNGevity!!! I had briefly considered writing a novel-length post that would recap all of the Caregiver-specific takeaways from the weekend, but then I realized that that would be unfair: unfair to you, my friend, having to read all of that at once, and unfair to the extent of the material itself. I have plenty of talking points from the conference to share with you, all about HOPE, and since this is HOPE month…you see where I am going with this… Stay! Tuned! Let’s start conversations! Let’s put our heads together and be honest and be open and reach out. I would be honored to hear from you! To kick off this month-long conversation, our regular monthly #LCCaregiver Twitter chat will be tonight (Wednesday, 5/3) at 8pmET. You know the drill: follow the hashtag #LCCaregiver to participate. (I highly recommend using a chatroom service such as tchat.io as well. Just put tchat.io in your address bar, and enter #LCCaregiver when it asks for a hashtag). If you are not on Twitter, please join! The lung cancer support community on Twitter is large, active, and incredibly helpful. There is no need to face any of this alone! The message boards and blogs here on LCSC are profoundly comforting, and the Twitter presence of fellow advocates is a meaningful complement. For tonight’s chat, we’ll be focusing on breaking down a large question: what is the role of Caregivers in spreading and advocating for HOPE in lung cancer? One major thought I’ve had since the HOPE Summit—one major takeaway I will explain in more depth later—is that HOPE can be complicated. It can be especially complicated when the Caregiver is taking the natural backup role: we are not the patient. What are our boundaries? When should we captain the HOPE ship? When should we yield? Is it a different skill to help our loved ones be HOPEful than it is to help spread HOPE in the wider community? Think on that. The specific topics I’ll be asking about tonight are listed below. I can’t wait to “see” you tonight! Bring your popcorn and a friend (or two)! Love and thanks, Danielle Topics for #LCCaregiver Twitter Chat 5/3 What does HOPE look like to you? What brings you HOPE? What does HOPE look like in the broader cancer community? What have you done to bring HOPE to your loved one? What can we, as Caregivers, do to bring HOPE to our loved one? Is there something that we, as Caregivers, can do to bring HOPE to our loved ones with cancer? What specific actions can Caregivers take to support Lung Cancer HOPE Month? What actions are appropriate for us to take as Caregivers to promote HOPE? What do we do if we have different ideas about #HOPE than our loved ones?
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I discovered I have stage 4 SCLC about 3 months ago, Dec of 2016. I was told without treatment I would have approx. 2 to 4 months to live. With treatment I could live up to a year and if really lucky I could live as much as 2 years. This devastated me! I have always had a strong faith in the Lord and so does most all of my family and many of my friends. However when it has come to my cancer I seem to want to rely on facts and not faith. I have gone through depression, which some of you here on this site have helped me with greatly, but now I realize I have had trouble believing in some of my own words. I have said "I know God can heal me if He wants." I had some in my family , who I have since talked to, want to only talk about a healing or an overcoming of this cancer and me living for years. I needed them to see my side of things and acknowledge the possibility that I could die. It has not been until today after a conversation with my mom that it really hit me that I am currently unable to acknowledge the possibility that I could live. Here is, I believe, my problem. When I was told I had cancer it hit me and my family hard, especially when we just lost my father a year and a half ago and he too had cancer. We knew he was dying of emphysema already when they discovered his body was covered in cancer. He died a week later. I was able to accept his death fairly easy because there was no hope of him living. In the same manor I can more easily accept my own "inevitable" death from cancer if I don't start, in my own words, "messing around with the idea of hope of being cured or healed." I feel like if I entertain those ideas and I am wrong then I will be devastated again. To me death is less scary then the depression I have gone through and am just now getting out of. The last thing I want to do is to go through it again. I also do not want to give my kids a false hope only to see them go through the devastation of it being wrong. I'm not real sure what to do or how to deal with this right now. I feel better just getting this out but if you have any suggestions those might come in real handy too.
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We've all experienced that sucker punch to the gut when we, or a loved one, are diagnosed. But several physicians have told me and others on this forum that a positive attitude is so important in this fight. There are so many wonderful survivors on this forum that gave me, and continue to give me, hope. I read this today and think it applies to all of us on this forum: Don't die before you are dead. So, I move on with life and have decided not to die before I'm dead. Cancer be damned - I'm going to Hawaii in 4 months.
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This book is a must read!! I finished "Scanziety: A Retrospection of a Lung Cancer Survivor" over the weekend. I highly recommend this book for patients, caregivers and friends of patients. I don't think that most people understand what our bodies go through during treatment, and Tom certainly had a tough time. I think the book also helps people understand that, while cancer patients do have a cloud of uncertainty that will follow us the rest of our days, we should live each of those days to the fullest. I enjoyed this book and I enjoy Tom's comments and support in this forum. His success story gave me hope when I had mentally started to give in to the dark place. Thank you, Tom.
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I am going to be setting up a booth to bring awareness and raise funds for Lung Cancer at local fairs and festivals. My booth will provide information, bandies and a donation bucket. I have acquired a small list of venues to set up my booth but would like to hear from everyone on any ideas they may have on any other settings to get our message out. I live in Mobile, AL. Thank you for any suggestions.
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Hot off the presses, there are still a limited amount of travel grants available (paid for accommodations) for LUNGevity's 6th annual HOPE Summit in DC! Please help us *share* the word. Here is the link to register:www.LUNGevity.org/DCHope -
I'm Christine this is the beginning of our journey with Dad, who called me distraught after being seen for what he assumed was bronchitis. He was informed by the on call Doctor that he had lung cancer and had a six month prognosis. I was heartbroken for him and infuriated with the unprofessional and callousness of this statement for a few reasons. Firstly there was no biopsy this information was based on evaluations of X-ray images and a CT scan. Secondly, I have a very close friend that is battling NSCLC Stage IV. She is responding to treatment and I have informed myself about this disease. My sister traveled to help dad get more information and get the kind of referrals to begin conversations about treatment options. His care has been excellent so far and we are very optimistic. Here is my summary of the last two weeks. It was a great visit, ten days of loving, laughing and caring for each other, days of gratitude. I wasn't prepared to hear the raspy breathing that the fluid is causing for dad. I am thankful for his doctors and remain hopeful for him getting more quality time. It's difficult being so far away, Dad lives in Idaho and I am in Hawaii. I am already thinking of when I can go see him again. He had a biopsy, finally, yesterday, soon we will know his mutation. He is meeting with his oncologist and also with a redial oncologist. The cancer has indeed metastasized to his brain and they are recommending aggressive radiation therapy, ten days consecutively and begin chemotherapy infusions as well. We are asking if he can receive immunotherapy as well. It's going to be a very long year. We are keeping a binder of all his doctor reports and summaries up-dating as needed. Also compiling best practices for mitigating the side effects of any treatments. Included are meal plans shopping lists. balms, tips to help keep him as comfortable as possible. If any of you have recommendations for a wedge that he can use for sleeping comfort I'd appreciate that. Aloha, Chrisitne
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We are only weeks away from the LUNGevity Columbus, Ohio HOPE Summit! You will not want to miss this amazing opportunity. Please share this! www.lungevity.org/columbushope (The summit is free, however registration is required.)
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We are only weeks away from the LUNGevity Columbus, Ohio HOPE Summit! You will not want to miss this amazing opportunity. Please share this! www.lungevity.org/columbushope (The summit is free, however registration is required.)
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HOPE is knowing that other people have survived lung cancer. What or who gives you HOPE?
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The Pacific Northwest is home to a vibrant community of lung cancer survivors and advocates and is proud to host a Regional HOPE Summit. This summit provides an opportunity to meet peers and experts, and enjoy the beautiful area. Regional HOPE Summit Northwest (Portland OR) registration is open! Join us Sept 12 in Portland for this great event! www.lungevity.org/northwesthope
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Hi everyone! I hope you all had a great weekend. I just wanted to let you know that there are ONLY 50 seats available for the FREE research lab tour on Friday during the Tennessee HOPE Summit. Please register today to save your seat, they are going so FAST! If you want more details please send me a private message. www.lungevity.org.nasvillehope
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MAY 1-3, 2015 Our National HOPE Summit takes place the first week of May, Lung Cancer HOPE Month. The goal of the weekend is to provide a summit for survivors with educational sessions covering topics like research, immunotherapy, ask the oncologist, pulmonary rehabilitation, communicating with your caregivers, managing your medical team, living with lung cancer, nutrition, writing and blogging, becoming an empowered advocate, and sharing lung cancer survivor stories. This 2½ days of celebrating lung cancer survivorship is an experience you won't want to miss. http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=534
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TAMPA HOPE SUMMIT A survivorship conference for anyone who has ever been diagnosed with lung cancer Saturday, March 7, 2015 While lung cancer survivors are encouraged and invited to attend, caregivers and medical professionals wanting to learn more about lung cancer survivorship are also welcome to register to attend. All conference sessions will be geared toward those who have been diagnosed with lung cancer. LOCATIONMoffitt Cancer Center Vincent A. Stabile Research Building, Ted and Marty Couch Auditorium 12902 Magnolia Drive Tampa, FL 33612 REGISTER NOW OR Attend by webinar! Register to attend online via Zoom. ABOUT THIS EVENTOn Saturday, March 7, in Tampa, Florida, LUNGevity is partnering with Patient Power for HOPE Summit Live! — a free in-person forum at Moffitt Cancer Center, where you and your loved one can hear the latest in treatment and research from leading lung cancer experts. Hear about emerging therapies, understand current treatment options, and learn about support resources. During this interactive summit, you will have the opportunity to meet and to connect with experts, other patients, survivors, and caregivers touched by lung cancer. Our hope is that you’ll share your knowledge with your peers, learn, and become inspired! Please join us in person for this FREE interactive summit to learn: Explaining lung cancer todayWhat do we know and what do we do about it? Where are we headed and how quickly? How is this personalized to you? What does this mean to you? Patient, caregiver, nurse, and social worker perspective: how to live well Tips and resources How and when to get support Financial, social, and logistical information Our expert panel will take your submitted questions, and advocates will be on hand to offer support and to connect with a broad range of resources. GUEST PRESENTERSDavid Carbone, MD, PhD Director, James Thoracic Center, James Cancer Hospital and Solove Research Institute Scott J. Antonia, MD, PhD Program Leader, Thoracic Oncolocy, Moffitt Cancer Center SPONSORSThis in-person forum is sponsored by the Patient Empowerment Network through educational grants from Pfizer, Genentech, and Novartis, with additional funding from LUNGevity. http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=532
