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  1. Don't help me.

    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  

    Please help me.  

    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.

    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  

    To their credit how can they know I need help when I don't look or act "sick"? 

    Ask me.

     

     

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  2. LaurenH
    Latest Entry

    By LaurenH,

    I was 52, a wife, mom and teacher when diagnosed with stage 3a NSC Adenocarcinoma lung cancer in September 2012. I had no symptoms and did not fit the criteria of a lung cancer candidate.

    An observant radiologist had noticed a small shadow in my lower right lobe when viewing an unrelated abdominal scan in 2010.  Because I didn’t fit any of the LC criteria, no specialist or surgeon thought that it would be lung cancer.  They adopted a “wait and see” plan using two six-month scans and then moved to a one-year scan at which that point indicated that my “nothing” spot had in fact grown and was probably lung cancer.

    My world had been turned upside down.  I quickly had surgery to remove my bottom right lobe and several lymph nodes. Unfortunately, cancer was found in the lymph nodes and the tumor. This led to four rounds of chemotherapy (Cisplatin and Navelbine) and 25 treatments of radiation along with all the mental and physical issues that many people can only imagine.

    Cancer can be a very lonely disease even when you have a ton of support. I couldn’t find survivors in my area so I began searching out on-line groups that I could communicate with about my disease.  This is where I discovered LUNGevity! The members of this group and all those associated with the organization wrapped their cyber arms around me and welcomed me into their world.  This was literally a life-saving experience for me and continues to be part of my daily communication. 

    Two years ago, people in the group began speaking about the National HOPE Summit in Washington, D.C. and how beneficial it was for both patients and caregivers.  Because I am Canadian, I inquired as to whether my husband and I could attend. I was told of course we could!

    My husband and I attended HOPE Summit and that experience has changed my life.  Meeting other survivors and hearing from physicians and researchers empowered me to return to my own country and begin asking questions about lung cancer research and most importantly, begin my work as a lung cancer advocate.  

    The Summit allowed me to meet so many people who are advocates not only for their own health but also for lung cancer research and advocacy work. These people meet with politicians, organize, and participate in lung cancer fundraisers and teach so many of us about treatment options. 

    Although Canada does not have as large a network, there is a small group of us who have been empowered to meet with politicians, educate and support others with the disease and spread the word about early lung cancer diagnosis, all because of our experience at a LUNGevity HOPE Summit.

    Education is power but knowing you are part of a strong, supportive, and knowledgeable group of individuals is invaluable.  Thank you LUNGevity!

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  3. By: Deborah R. Burns

    “Everybody can be great. Because anybody can serve. You only need a heart full of grace, A soul generated by love.” - Dr. Martin Luther King, Jr.

    Charlotte Jamison is many things: a Christian, a mother, a teacher, a friend, and a volunteer.

    Over the past two years, Charlotte has volunteered her time and talents to assist in the efforts of the LUNGevity Foundation’s Annual Breathe Deep DC 5K Walk.  Charlotte serves as the backbone and chief fundraiser for Team Open Technology Group: (OTG) United for A Cure.

    Charlotte and my family have been friends longer than I can remember. She and my husband Leon had a special relationship. I still remember how they would often laugh together, share experiences, and enjoy working together on church projects. After my husband was diagnosed with lung cancer, she was the key person who supported me and walked me through that unforgettable journey. Since my husband’s death in 2011, she continues to be a huge inspiration in my healing.

    A member of New Canaan Baptist Church in Washington, DC. (Gregory M. Sims, Pastor), Charlotte has engaged the entire congregation in being part of this important cancer-fighting effort. She sets up a beautifully decorated table each year to receive donations and to recruit walkers for the OTG Team. She and her helpers work tirelessly documenting information, promoting the cause, and speaking to individuals about the walk.

    On the day of the walk she always arrives with a smile and eager to help.  She immediately begins handing out goodie bags, gathering our Team and rallying “Team Spirit”.  Many of the volunteers from other teams admire her enthusiasm and dedication for the cause.

    She inspires through example.  I can never thank her enough for all that she brings to our Team and fighting this disease that claims thousands of lives each year. Did I mention that she’s 80 years young! God strengthens her to do His work. She often says “As long as the good Lord enables me to work, I’m going to work.”

    Open Technology Group’s cup runneths over for having Charlotte Jamison serve as a volunteer for OTG: United For A Cure. We are truly blessed by having her.

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  4. Tom Galli
    Latest Entry

    I had an interesting chat with my general practitioner over the Fourth of July holiday.  He’s a gentleman rancher with an abundance of tomatoes so I brokered an invite to his beautiful ranch to relieve him of his abundance.

    A social cup of coffee segued into a wide ranging conversation about medicine, ranching, politics, engineering and cancer treatment.  Doc has lots of opinions but they are founded on deep study and comparative analysis.  But, unlike most intelligent people, he rarely uses technospeak but rather explains complex topics in easily understood words and concepts. Thus fostering interesting conversation. The topic turned to patients seeking second opinions and physician egos.  His words are worth capturing: “I don’t mind a patient seeking a second opinion…I get paid.”

    Doctors are important people in our society. Our adulation of their skills causes us to forget that in a pay for service system; customers have a right to express dissatisfaction and seek alternative practitioners.  If you don’t like the medical service you pay for, find someone who provides better service.

    Stay the course.

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    Recent Entries

    In March of this year I was diagnosed with stage IV NSCLC, Adenocarcinoma,  as the result of a case of pneumonia. Already under the care of a Medical Oncologist as the result of having been treated for another type of cancer the previous year. That treatment went well, NED. On my first consultation he explained the standard treatment options for stage IV. What I was hearing ( and said to him), was, "So the bottom line is I'm dead." I have to admit that I taped the consult and was a bit ashamed of myself when I listened later. I actually like my Med. Oncologist but was very aggressive. Finally, he said, "Okay, you're young ( not really), and healthy and respond well to treatment, so let's go for a cure." He had done a study with some other doctors on treating Oligometestatic lung cancer with a curative intent. Oligometestatic means, in my case, that I had a nodule in my left lung and 2 in my right lung, but P.E.T. showed no spread outside my lungs. C.T.'s done since then still do not. Talked with my family and we decided within 24 hours to go with his plan. His plan was to give me S.B.R.T radiation on all 3 tumors followed by chemo. Then hit a snag with Radiology Oncologist. He didn't want to do rhis. His concerns were that it wasn't standard of care ( it has since come into standard of care) and that I'd had 33 standard radiation treatments to my right breast the year before, so he was considering possible toxicity issues. I persisted, my Med. Oncologist persisted, and by God's grave a new doctor had just come on board at my hospital about the time I was diagnosed with extensive experience in S.B.R.T. So, I got my treatment. I had 5 fractions of 1000-1500 centigrays of radiation for a total of 4500-5000 centigrays over a 2 1/2 week period. It was done twice a week. Normally S.B.R.T. is done daily or every other day. I'm thinking my Rad. Oncologist chose to do it this way because of his concern about toxicity. The physicist assured me when I ask that the fractions were too high for the cancer to develop resistance in that length of time. They treated all 3 tumors each time. This took about 1 1/2 hours and I was required to lay totally still the entire time. That was the only difficult part. Had no adverse reactions to the radiation at the time and have not had any to date. Next scheduled for 4 chemo treatments of Cisplatin/Alimta spaced 3 weeks apart. Am one week out from my second treatment. Can't say I've had no side effects from this. You guys know exactly what I mean. Lol. The only scans I've had were brain M.R.I. and 2 abdomen/pelvic C.T.'s since diagnosis. Both were clear. Med. Oncologist plans to scan lungs at the end of chemo as of now. So we will see what we will see. Hoping this works out for me and will also help someone else down the road. Many thanks to Tom Galli for suggesting I do this blog, all his support, and hanging in there with me until I could figure out how to get it done. 

    Judy M.

     

     

  5.  

    Hello, my dear friends!

    I. Have. Missed. You!

    It is so tempting, in my relationship with caregiving, to take on blame. Blame myself for this or that. Plans didn’t go off accordingly? It’s my fault. Time got away from me without my control? Oh, that’s my fault, too. Sign me up!

    Since my last post, our “best laid plans” were thrown out the window. Forcefully. To be totally real with you, my friends, I had wanted so badly to post about ALL THE HOPE in May. I wanted to fill your inboxes with notifications that there was a new post here every day. I wanted to fill your “Caregiver Quiver” (ooooh, I like that, I’m gonna use that!) with so many HOPE arrows that you would have a weapon to combat every moment of hopelessness.

    After all, May was Lung Cancer Hope Month (thanks to LUNGevity!). That’s huge. For a diagnosis that used to be like a flipped hourglass, any dose of HOPE can make the difference between having or losing the will to fight. We who spend every day in the LC community know there is SO MUCH HOPE, and yet Society At Large still sees the hourglass.

    So: I had wanted so badly to fill your May with links and resources and information on the newest and best stories and breakthroughs and answers. That was my “best laid plan.”

    But then, my dad ended up in the hospital for the entire month of May. My mom is my LC patient, but my dad has his own chronic health issues that require frequent hospital stays.

    You know the darndest thing about hospital stays? They aren’t always marked out in my day-planner! Shoot. Go figure!

    So. There went May. And I have been tossing and turning and being grumpy and angsty about letting you guys down. I went and pulled the tweets from our last #LCCaregiver twitter chat, when we talked about HOPE and how we could spread hope and share hope and how we as caregivers could encourage our loved ones to have ALL THE HOPE. I was in a real funk, guys. I really felt like I had lost the chance to really make Lung Cancer Hope Month “count.”

    Then, it hit me…

    Do you remember what we talked about in that chat? Because I do, and I will NEVER, ever forget it.

    We talked about HOPE, and sources of hope, and we said: this community is our source of hope. This group of souls going through the same thing is our source of hope. We feel hopeful by being there for each other, thick and thin.

    And my angsty funk? My trying to stick to plans? That was all making me feel hopeLESS. I was acting and talking like a person who felt hopeLESS.

    No more. I reject that trap. You are my family, and I am yours. I don’t need deadlines and set schedules to be there for you, and you don’t need that to be there for me! The most relieved I have felt along this entire walk with lung cancer have been the times when I let go of trying to keep to an ironclad schedule, and have instead followed my gut and allowed myself to really be present in the current moment and what the moment needed.

    I want to be present for you, and I know you are present for me. We are all in this together.

    Now, don’t get me wrong: I DO want to catch up and write some posts about ASCO (the major oncology conference that just took place in Chicago); about recent drug approvals; about ways caregivers can find peace. And I will. But I also know I won’t be letting you down.

    Let’s chat!

    TONIGHT (Wednesday) at 8pm ET, let’s chat about the support network you keep around you. Let’s talk about what you need, where you feel most confident and least confident, and what you can do to help your support system help YOU. This is an ongoing conversation, believe me; let’s all grab our tea and put on our slippers and come together to follow #LCCaregiver tonight. Questions are below. I hope to “see” you there! Bring a friend; all are welcome.

    Love always,

    Danielle

    #LCCaregiver Twitter chat, tonight (Wednesday) at 8:00PM ET. Follow #LCCaregiver on Twitter to participate!

    T1: Who do you consider your “support system?”

    T2: What are the strengths in your support system?

    T3: What are the gaps or weaknesses in your support system?

    T4: What has been the hardest thing to ask someone? What kind of help is hard to find?

    T5: Would you rather people ask what you need, or just volunteer specific help?

    T6: What resources or tools would you like to have in your Caregiver Quiver? (sorry, can’t help it, I really love that phrase now)

    (If you’ve never used the LUNGevity Navigator App, just wait: I’ll tell you about it tonight!)

    T7: Are there local resources for caregivers where you live? What local resources would be cool to create?

    T8: What can the nonprofit orgs like LUNGevity do for you? (have you checked out LUNGevity’s awesome caregiver resource center?!)

    T9: What can your fellow caregivers best do to support you from afar?

     

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    Recent Entries

    Hi all, I hope this is not stupid. I'm going to see a pulmonary doctor Saturday and I'm scared to hear the news. I'm almost positive I have lung cancer. Can someone tell what the first consultation will be like? thank you!

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    My name is Eleanor

    I have cancer, but it is not who I am.

    I am not a number or the result of a

    lab test.

    My name is Eleanor

    I am a baby at my mothers breast.

    I am a toddler being thrown high in

    the air by my father and giggling.

    I am a young girl playing with my

    dolls and my trucks.

    I am a teenage girl going on my

    first date full of nervous anticipation.

    I am graduating high school and

    trying to figure out what next.

    I am a young woman walking down

    the aisle with the love of my life.

    I am an employee and a homemaker

    I am a new mother.

    I love my family, my friends, roses, cooking

    and reading.

    I love watching sappy old movies and

    going through a box of tissues while

    munching on popcorn.

    I love to dance and sing.

    I am a woman, a wife, a mother, a sister,

    a granddaughter,a niece, an aunt, I am

    a grandmother and a great grandmother.

    I am all of these things and more but what

    I am not is a disease.

    I have cancer and it may destroy my body

    but it cannot touch my spirit or my soul.

    So you see although my body may have cancer it does

    not have me.

    My name is Eleanor.

  6. PeggieH

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