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I noticed something recently at the in-person support group I facilitate.
Caregivers in my group didn't speak up about issues or feelings unless the facilitator or group leader mentioned them first.
"Like Jan said, I have feelings of ____ too."
After the third time, it occured to me that caregivers are either waiting to have their feelings validated by someone else or didn't realize they had been feeling those feelings.
I remember being a caregiver for my father and how all-encompassing that was. Nothing else mattered to me at the time. Everything was about my dad's cancer, his feelings, his happiness, his peace and comfort. I don't think I got more than 2-3 hours of sleep a night during those 11 months- there was just so much to do! I completely lost myself and any sense of "me" during my caregiving. I would never consider taking time for myself, taking a break or openly expressing my frustrations and concerns- that would be selfish- afterall, I wasn't the one in treatment with cancer. I wasn't the one fighting for my life, right?
If given the opportunity then, would I have taken advantage of caregiver resources or support groups? Would I even know what I was feeling or how to describe it?
Until we are able to have caregiver-only support groups in every community, how can we give caregivers the encouragement or "permission" to put a voice to what they are feeling?
How do we as caregivers divorce ourselves from the guilt that accompanies self-care?
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I'm writing this from a Florida Hospital radiation clinic waiting room. My daughter is having intensity modulated radiation therapy (IMRT) to treat her meningioma residual left over from surgery 3 months ago. This was her second brain surgery and in between was the birth of my granddaughter. Ironically, our greatest joy was sandwiched between our greatest fear.
She'll have at least 30 fractional sessions. I'm here doing grandfather and father stuff, the former fun, the latter hard as nails.
There are substantial risks. The tumor residual is lodged around her eye socket and the impact to her vision is of vast concern. We've talked about it. Mostly we try and forget. Daughter feeds back my mantra of only worrying about things that can be controlled but it doesn't ease my concern. Too much experience in this radiation domain to not worry. I find myself undone by uncertainty, again!
Yesterday's clinical visit experience was my first in a long time. Things haven't changed. Quiet people waiting for their time with "the beast", families talking in hushed tones, most have lost hair indicating combination therapy. One change: the radio oncologist came out to greet my daughter. He supervised the fitting of the facial fixture and stayed through the entire dose application. That was unique in my experience and immensely comforting. Maybe the cancer community is learning to treat people not patients.
Passing on parental knowledge and experience is expected but not on this subject matter. We need to fry this tumor, but the potential vision side-effects are disconcerting. We've got one chance, twenty-nine radiation bullets left, and then scanziety and hope. Tumor is a word I need to discard from my vocabulary.
We will stay the course.
Allison Doan has been on a long journey of self discovery, from a life of elite privilege to a brief time in federal prison, and then a battle with stage IV lung cancer. Through years of ups and downs, and finding forgiveness and strength she didn’t even realize that she possessed, Allison has remained determined to share a message of hope.
Allison’s broken road has led her to a place of peace. She’s written an inspiring memoir, Bruised and Beautiful, which will be published later this month. By sharing her story, Allison hopes to inspire people that it’s possible to get through life’s hardships with love, faith, and trust.
“I wanted to write the book when I was facing prison because I knew that I was going to take something horrible and scary and turn it into something good. I wanted to convey a message of hope that you can face anything with God on your side. When I started writing, I thought I’m going to end it here, and then the cancer struck,” says Allison.
She describes her cancer diagnosis on her Caring Bridge site:
“In early November 2014, I noticed a large lymph node on the right side of my neck. I was also having some pain with breathing and a dry cough. After some time had passed and no progress from antibiotics, my primary doctor ordered an ultrasound and several CT's which would reveal some concerns.
The CT had shown 3 large lymph nodes in my chest (mediastinum area), 3 nodules in my lungs and 2 nodules in my thyroid gland. I was referred to an oncologist who ordered a biopsy on December 29. I was preparing myself for the news of possible lymphoma or squamous cell carcinoma according to what the doctor said. My doctor informed me that I have what looked to be medullary thyroid cancer a very rare form of thyroid cancer. A blood test was ordered to confirm this and a PET scan to see where the cancer might have spread.
I began the arduous task of research to find those doctors that might have a specialty in this area. We decided to head to MD Anderson in Houston for a second opinion. After more testing and another biopsy it was confirmed that the cancer was actually coming from the lung. They diagnosed me with Stage IV neuroendocrine lung cancer which is incurable.
After the shock and fear subsided I began to cling to my strong faith in our loving heavenly Father who holds me and this situation in His loving hands. Jeremiah 29:11 'For I know the plans I have for you sayeth the Lord, plans to prosper you and not to harm you, to give you a hope and a future.'”
Realizing that her story wasn’t complete, Allison continued to write while undergoing treatment, hitting some roadblocks along the way. Allison says she “learned to navigate through the world of a cancer patient: days of normal, days of doctor visits, days of feeling great, and days of feeling crummy. Lung cancer is an up and down journey of new treatments. Then they stop working and you try something else.”
Allison’s husband and care partner, Keith, has been by her side since the moment of her diagnosis. The two were married while she was undergoing treatment and planned their honeymoon in St. John in between clinical trials.
Allison shared her story with country music artists Dave Fenley and Ray Johnston, who penned a song in her honor. The song, called Bruised and Beautiful (Alli’s Song), is full of grace and gratitude. It carries Allison’s powerful message of living each day to the fullest and trusting God.
Part of proceeds from book and song will go to LUNGevity Foundation. LUNGevity was the first organization that Allison found when she started looking for online support after her diagnosis. The song Bruised and Beautiful is available for download on iTunes. Allison’s memoir of the same title, will be published in June 2017.
In May, Allison entered hospice care to help with symptom relief and quality of life. She tells her family and friends that she’s staying “Allistrong” and that she’s humbled by the love, support, and encouragement she’s received. “Above all,” Allison says, “life is worth living.”
Allison and her husband Keith, with their children Daniel, Peter, Megan, and Grant.
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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.
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.
#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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I was diagnosed with lung cancer in August of 2011 out of the blue, totally unexpected. I went for a regular checkup after experiencing some gastric reflux and abdominal pain. The doctor suggested an abdominal CT scan. He called me back into his office and told me that, although the scan was of my abdomen, a part of my lung had been included. A little shadow had shown up there that concerned him. He asked me to undergo a second CT scan, this time of my lungs. That scan revealed a prominent area of masslike consolidation in my left lower lobe. The next day I saw my pulmonologist, who scheduled me for a needle biopsy. At the time, he didn’t think that the scan findings really indicated a lung cancer. I was not concerned either, as I had never smoked and had little history of cancer in my family.
I was traveling home from a visit with some friends when I got the call from the hospital. The emotional voice on the other end was cracking. I didn’t even realize that it was my pulmonologist. He said, “We got the results from your biopsy. You have a very large tumor taking up most of the left lower lobe of your lung. We have to get this right away. We’ll get through this honey.” It was surreal. I thought it was a mistake.
I was diagnosed with non-small cell adenocarcinoma. They scheduled surgery right away to remove a lobe of my left lung. That was followed by chemotherapy. It was a very tough time. After I recovered from that surgery and the chemo, I just wanted to go back to my life. I’d been very happy with my life. I was a volunteer chaplain. I didn’t know any other survivors and I didn’t want to think about lung cancer anymore. They said I only had 15% chance of the cancer coming back so I wasn’t going to worry about it.
A year later, the cancer came back. Looking at the scan, I felt like I was in a nightmare. The second surgery to remove the rest of my left lung was easier, because I knew what to expect. But after that surgery and treatment, I knew I needed to get plugged in and started searching online for an organization that could help.
I liked that LUNGevity Foundation was constantly posting helpful information and seemed focused on survivors. Before I was diagnosed with cancer, I had enjoyed the experience of mentoring, so I applied to be a LifeLine support partner. Nikole from LUNGevity reached out and invited me to attend the HOPE Summit survivorship conference. One of my friends went with me and we had such a wonderful time. HOPE Summit changed my life.
Before that time, I had been pretty isolated as a survivor. When I walked in and saw that many survivors, I was amazed and overwhelmed. Hearing others share their experiences changed my whole attitude. The main thing I came away with after HOPE Summit is “be your own advocate.” My amazing friends that I met through LUNGevity connected me with my current doctors at UT Southwest.
Any time that you need support from LUNGevity, it is available. I am a LifeLine mentor to other survivors, but I also have LifeLine mentors who have helped me through two recurrences of cancer. They’ve really inspired me and kept me looking forward. Mentoring is a two-way relationship. If they’re feeling down, I can help them and if I’m feeling down, they can help me. It is so rewarding. I’m also a LUNGevity Social Media Ambassador.
I’m a big believer in the power of connection. If we isolate ourselves, we focus more on the negatives and everything that’s wrong. But if you’re out there connecting with other survivors, you’re sharing the ups and the downs, you’re not alone. It really helps. The advice I like to share with other people who have lung cancer is if you don’t like what one doctor says, it’s very important to be your own advocate. It’s your life!
Recent EntriesLatest Entry
My name is Eleanor
I have cancer, but it is not who I am.
I am not a number or the result of a
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
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.