Riding the SRS Train

Well, another little bugger showed up on my MRI. The good news is that it's small (5mm) and we caught it early so SRS (stereotactic radiosurgery) is a great option again. Also, the Xalkori is still working great on the rest of my body - I've been on it for 2.5 years, which is pretty remarkable.

I go in tomorrow for the planning session. The other upside is that the cancer center has a brand-spankin'-new machine which does NOT use the Frankensteinesque drills-into-your-skull frame. I'll get a better look at the fancy new tech tomorrow.

What a surreal thing this stage IV life is.

So, I'm back on the SRS train. Just hope it keeps on chugging along for a long time.

A Day I Never Expected to See With Metastatic Cancer

This weekend I celebrated a day I never expected to see – my fortieth birthday! It has been almost three years since that awful day when I found out that I had lung cancer that had spread throughout my body. In those days, I was so very sick and weak that I couldn't imagine living for another six months, let alone entering my 40s.

I decided it was a milestone I needed to celebrate BIG, but I also wanted to give something back to the community that has supported me and quite literally kept me alive this far. I decided to have an improv show at the theatre/brewery that my husband and I co-founded, and to give all the funds to cancer research. It was an amazing night. I told the story of my cancer journey, and our incredibly talented cast of improvisers took those ideas and themes and turned them into hilarious scenes that had the audience – myself included – laughing until our sides ached.

But, as it seems to happen with every joyful occasion on my life now, part of me kept wondering if this would be the last birthday I would see. I have no delusions about the path I'm on, and I am acutely aware of how insanely lucky I have been so far. I have become intricately connected with the lung cancer community, a group of people who have kept my sane throughout this awful rollercoaster ride. Unfortunately, I have learned how quickly the tide can turn and sometimes the person you were sure would beat the odds doesn't.

It's a delicate balance, this stage 4 life.

On the day I turned 40…

…"scanxiety" crept around the edges of my mind. My three-month scans were due the day before my birthday, but I requested to have them pushed back a week so that I could enjoy my celebration with a (relatively) calm mind.

On the day I turned 40…

…a fellow stage 4 boldly embraced her future and got married. Despite the uncertainly, she took the brave step into her future and decided to live!

On the day I turned 40…

…my lung cancer community mourned as a fellow stage 4 took his last breath. Treatment after treatment failed him, and despite seeking out specialists and clinical trials, the cancer moved too fast.

Birthdays are a time for looking back and looking forward and taking stock of where you have been and where you hope to go. At times like these, it is hard not to think about the daunting five-year survival statistics for metastatic lung cancer. These numbers have recently doubled – sounds great, right? But they doubled from 1 percent to 2 percent. As I approach my third anniversary of living with this disease, I can't help but wonder if the clock is ticking.

I try to find the balance, focusing on all the joys I have in my life now, and daring to let my mind wander into the future. I sure hope to blow out candles that read "41."


Originally published at: http://www.curetoday.com/community/tori-tomalia/2016/03/a-day-i-never-expected-to-see

Parenting with a Chronic Illness

My daughter shared her cold with me (thanks, Miks) and when you mix a simple cold with a "chronic disease" like metastatic lung cancer, well it pretty much knocks me out. I've spent most of the day lying on the couch. After I picked up Zander from school, I immediately lay back down on the couch without taking off my coat or anything.

Zander froze and stared at me lying on the couch and then said,

"It makes me feel like your cancer is growing again."

I reminded him that I just had scans and the cancer is so small they can barely see it.

"I know, but it makes me nervous to see you sick."

He was only 4-turning-5 when I was diagnosed and SUPER sick, and he says he doesn't really remember those days, but I think on some level it has stayed with him.

Sigh.

Also, my apologies that I have neglected this lovely blog for so long. Things are good with my health, the latest MRI showed that the SRS worked super well, so the plan is to keep chugging along with Xalkori and if anything else pops up we will zap it again. All of my creative energy has been going toward getting our Pointless Brewery & Theatre up and running. Things are going super well there, and it has been SO MUCH FUN! A wise person said to me that, in addition to the fulfillment of a dream, this business is a kind of self-care for me, a way to envision the future in a way that is less painful and uncertain than my own future. I think she is correct.

Day 30: Jamie Shull, advocate. "Anyone with lungs can get lung cancer."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 30: Jamie Shull, advocate
"Anyone with lungs can get lung cancer."

I am happy to connect you all with lung cancer advocate Jamie Shull.

Jamie will be quite thrilled when lung cancer is a manageable, chronic disease, that keeps people living and living well.

She feels strongly, “Anyone with lungs can get lung cancer.” That is the message she spreads.

The cancer bomb exploded into Jamie’s life when her husband of 18-years, Kurt, was diagnosed with advanced stage lung cancer in December 2010. She took on the roll as primary caregiver doing what ever it took to ensure the best care for her husband and their 14-year-old son. First line treatment took nearly everything out of Kurt. Unwilling to accept the way things were headed, Jamie, using her superior “get-shit-done” skills, found a clinical trial at a local teaching hospital – a turning point for Kurt as well as lung cancer as a whole.
...continue reading...

Day 29: Genevieve de Renne, caregiver. "Never underestimate the power of love, and the power of your own thoughts."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 29: Genevieve de Renne, caregiver
"Never underestimate the power of love, and the power of your own thoughts."

How long have you been a caregiver?
"If you are just talking about being a lung cancer caregiver, it has been a little more than nine years since you were diagnosed the first time. If you define being a caregiver as being there for someone unconditionally, it started when I was a single mom, and then when I was a caregiver for my parents in their later years."

What was it like in the beginning?
"I was in an emotional haze. It’s gut-wrenching to see your loved one go through something like this, and to know that there’s nothing you can do. I had no control, and it was challenging for me. I wasn’t prepared for how quickly I could go to straight to fear."
...continue reading...

Day 28: Dr. Alice Shaw. "Alice is my super-hero."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 28: Dr. Alice Shaw
"Alice is my super-hero."

(From Linnea Olson's blog, Outliving Lung Cancer)

Alice and I met under what then felt like sad circumstances. It was the spring of 2009 and I was several months into my snatched from the brink of death fairy tale; aka crizotinib. As far as I was concerned (and I still feel this way), my original oncologist Dr. Tom Lynch walked on water. However, I woke up one morning only to read in the Boston Globe that Tom was leaving MGH to become the head of Yale’s Smilow Cancer Center. I was devastated and sent him a quick message saying I felt like he’d broken up with me via email. In my head I was already thinking I’d have to move closer to New Haven as I viewed my continuing survival to be inextricably linked to Tom Lynch–as an oncologist he was always on the cutting edge, having tested me for an EMLK4-ALK translocation in June of 2008, long before most of the world had even heard of an ALK mutation.
...continue reading...

Day 27: Dave Bjork, survivor. "It’s all about relationships."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 27: Dave Bjork, survivor
"It’s all about relationships."
Twitter: @bjork5

Who is Dave?
I am a lung cancer survivor, and I am a passionate advocate for cancer research and education. Professionally I’m the Vice President of Development for the National Foundation for Cancer Research in Bethesda, Maryland. In my role I advocate for funding important research projects led by scientists at places like Massachusetts General Hospital (MGH), MD Anderson, Dana Farber and so many others. Among the researchers that I am very vocal about, and that are supported by my organization in the area of lung cancer, are Drs. Daniel Haber and Alice Shaw at MGH, and Dr. Jin Jen at Mayo Clinic.

What is your connection to lung cancer?
I was diagnosed with lung cancer. I was 34 years old, married with 3 young boys age 5, 3 and 1, and I had never smoked. I received amazing treatment at Mass. General Hospital by thoracic surgeon Dr. Doug Mathisen among others. I had a lobectomy to remove my lower left lobe, and was fortunate that there was no spread of disease. I have been forever grateful and am committed to advocating for more research for lung cancer.
...continue reading...

Day 26: Christian Nataline, survivor. "You understand that we’re all interconnected to each other and with the planet."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 26: Christian Nataline, survivor.
"You understand that we’re all interconnected to each other and with the planet."

(From Linnea Olson's blog "Outliving Lung Cancer.")

I met Christian Nataline five years ago—we were guests of our mutual oncologist Dr. Shaw at a function where she was being honored. I was struck by how young Chris looked and learned that he’d been diagnosed just after turning thirty-one. He’d been married less than a year (to his amazing wife Karen) and was the father of an eight month old. Like me, he was also a mutant—ALK+ and stage IV.

...continue reading...

Day 25: Roz York Brodsky, survivor. "There is much more hope than there used to be"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 25: Roz York Brodsky, survivor.
"There is much more hope than there used to be"

Eleven years ago Roz York Brodsky was diagnosed with non-small cell, giant cell, locally advanced lung cancer. This is a very rare form of lung cancer. At the time there wasn’t the social media support and people like Peter Jennings and Dana Reeves were dying from lung cancer. She was terrified. The upper right lobe of her lung was removed. She was only 46 at the time. Afterwards, she began regular check ups.

A year ago, she was diagnosed with stage 1 non-small cell adenocarcinoma lung cancer. Luckily, it was caught early due to her on-going regular check-ups. At this point they removed the middle right lobe of her right lung. She currently has stage 0 but with pre cancer cells in her left lung, so is facing another possible surgery.

Roz has been able to resume a normal life to an extent. ...continue reading...

Day 24: Jeff McManus, caregiver and advocate. “I used to be a loner before meeting Cara.”

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Lung Cancer Awareness Month 2015

Day 24: Jeff McManus, caregiver and advocate.
“I used to be a loner before meeting Cara.”
Twitter: @Jeff3263827

Jeff was a caregiver for his wife, Cara, who passed away in April 2015. She only survived 20 months after being given her stage IV lung cancer diagnosis. They met in 2006 and quickly became good friends. They would have been married for 4 years in June of that year. Jeff confessed to me, “I used to be a loner before meeting Cara. She brought me out of my shell and we started hanging out with friends.”

Jeff has a PhD in biology and works full time in a research lab. He enjoys his work and his coworkers. In his free time he likes playing trivia with his friends, going to Indie rock concerts, and cooking. He and Cara both loved cooking and often made meals together. He also likes to stay active by riding his bike, another fun activity him and Cara did together, lifting weights, and playing basketball.
...continue reading...

Day 23: Rachael Willeford, advocate. "Everyone deserves hope!"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 23: Rachael Willeford, Lung Cancer Advocate and Co-chair of Lafayette (Louisiana) Free to Breathe
"Everyone deserves hope!"
Twitter: @PollywogPrinces

Rachael, what is your connection to lung cancer?

Four members of my mom's side of the family have died from lung cancer. Two of them were my mom's best friends - her brother and her cousin. They both were ever present in my life. In 2012, I learned that someone had started a fundraiser called Free to Breathe in my town, and I decided to participate. Afterwards, I volunteered on a committee and would eventually become the co-chair of the event a few months later. After I learned that my mom's cousin, (who passed away in 2009,) and her father, (who also passed away from lung cancer in 1978,) had virtually the same survival rate, I dove headfirst into advocacy. I now focus on patient and community education and outreach, locally, with Free to Breathe.
...continue reading...

Day 22: Sandy Arlin Jauregui-Baza, survivor. “Life doesn’t have to end after diagnosis. It can be a wake-up call to start making YOU your biggest priority in life.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 22: Sandy Arlin Jauregui-Baza, survivor
“Life doesn’t have to end after diagnosis. It can be a wake-up call to start making YOU your biggest priority in life.”

Who are you?
 
I’m a 32 year-old “kid” from Los Angeles, California with an amazing husband and two lovely fur babies: Gambit and AmaDablam. I love everything about the great outdoors, from camping, hiking, jogging, kayaking…. well, you get it

 

What is your diagnosis history? 

 

I was diagnosed a few months short of 30, at age 29, with NSCLC. At the time of diagnosis, I’d already developed multiple lung nodules in both lungs and lesion along my spinal column; in other words, I was considered a stage IV patient....continue reading...

Day 21: Dr. Ross Camidge, MD, PhD. “Progress will come from changing the way we think about cancer”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

 

Day 21: D. Ross Camidge, MD, PhD, Director of the Thoracic Oncology Clinical and Clinical Research Programs, University of Colorado 
"Progress will come from changing the way we think about cancer"

What is your connection with lung cancer?

The first lung cancer patient I remember was called John and he was a plumber in Edinburgh in Scotland. He had never smoked and was one of the first people to go on an EGFR inhibitor in a trial and had a great and long lasting response. He was the nicest of people and introduced me to all his tradesmen friends and I will be forever grateful to him for getting me on the inside track for fixing up my ‘fixer upper’ at the time. We didn’t know about EGFR mutations at that point but it was enough for me to see the potential and the need for breakthroughs in this common serious disease. Now, 15 years later, I run the lung cancer program at the University of Colorado Cancer Center where I am a physician and a clinical and translational researcher.
...continue reading...

 

 

Day 20: Denise Cutlip, survivor. "I saw the hopelessness in my family’s eyes when I was diagnosed and I want to help alleviate that for others."

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Lung Cancer Awareness Month 2015

Day 20: Denise Cutlip, Lung Cancer Survivor
"I saw the hopelessness in my family’s eyes when I was diagnosed and I want to help alleviate that for others."
Twitter: @dennycee

Her connection to lung cancer-
Denise is no stranger to lung cancer. Her father passed away when she was just 15 from mesothelioma from working in boat yards and the plastic industry. She then lost her mother to adenocarcinoma lung cancer in 2006 shortly after being diagnosed. So when Denise was diagnosed on 10-10-10 with stage IV adenocarcinoma, her first thought was “Oh crap! What can I do to live longer than 6 months?”

She was given 15 months to live and she felt like she lost all of her independence. She did some research and later connected with other survivors on Inspire. Learning and sharing with others in her position is what gave her courage and hope to carry on. Even though her family just wanted her to rest, she did not want to be a burden on them. So she slowly started doing little things around the house, not only to contribute, but to also feel like a productive person again. She also started with short walks down the driveway, which eventually graduated to down the street, and then to a whole mile. She was finding her “new normal.”
...continue reading...

Day 19: Anne Gallagher, survivor. "I feel like I’m here to take care of others"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 19: Anne Gallagher, Lung Cancer Survivor
"I feel like I’m here to take care of others"

Anne Gallagher spends her days as a patient navigator at Willamette Valley Cancer Institute in Eugene, Oregon. She is a valuable team member dedicated to all kinds of cancer patients, keeping a close eye on them to ensure that they receive great care in all areas of health.

Her professional career in healthcare began 11 years prior in Women’s Health. The transition to oncology came shortly after Anne’s own cancer diagnosis in 2002 at age 25; clearly a shock and turning point in her life.

Diagnosed with early stage neuroendocrine lung cancer, surgery was recommended. Specifically, removal of two lower right lobes. ...continue reading...

Day 18: Gail Lemaire, Lung Cancer Survivor. "I have 30% lung capacity and I'm still laughing my head off!"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 18: Gail Lemaire, Lung Cancer Survivor
"I have 30% lung capacity and I'm still laughing my head off!"

Gail, what is your connection with lung cancer?
“I am a survivor of lung cancer five separate times over the past 23 years. I have also had breast cancer twice, and thyroid cancer twice.” Gail is also an advocate for others with lung cancer.

Why do you think you’re still alive???!!!
“First, I have the most unbelievable husband in the world. He is there for me every minute of every day. It seems doubtful that I could have made it through all of these difficult illnesses - cancer, surgery, treatments, and thousands of tests, etc., without his love and support. Next, I believe in the power of positive thinking. I want to LIVE my life, because I am the luckiest, most blessed, happiest, most contented woman you could ever meet! I’m thankful for every minute of every day that I’m alive. Also, God keeps me here for some purpose, and I’m still trying to figure out what that is. I hope I'm doing it. Of course, good treatment and good doctors are a very important part as well.”
...continue reading...

Day 17: Kim Ringen, survivor. "Everyone kept blowing off my concerns as typical pregnancy symptoms."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 17: Kim Ringen, Lung Cancer Survivor
"Everyone kept blowing off my concerns as typical pregnancy symptoms."
Twitter handle: @KimberlyRingen

Who is Kim Ringen? Tell us a little bit about who you are, aside from cancer.

Funny I can’t get away from cancer even in my former life….I’m a veterinarian oncologist. I love being a veterinarian. I wanted to honor the human animal bond when picking a specialty - I chose oncology for 2 reasons. #1 I wanted to help further honor that bond by helping guide pet owners through what is considered one of the darkest days for their companions. #2 I find the intricate cellular backbone that drives cancer biology so intriguing from a science standpoint. This has been one of the hardest parts of my former life to let go… being a veterinarian is not just a job it becomes part of who you are..regardless if you are able to practice of not.

I love skee ball. If I walk into a restaurant or bar with a skee ball machine I am hooked.

I have 3 dogs (lab, grey-mixed breed, and pug), a cat and 7 chickens – in the city. We named the chickens after our friends. We have them kinda trained like dogs.

I was a avid runner prior to my diagnosis – I loved running. If I could run again I would feel more like my former self. My previous half-marathon pace was 8:28/mile…. I would settle for 20 min miles now if I could.

Since I no longer run I have taken up watercolor painting and writing. I am enjoying these hobbies.


How did they find out you had lung cancer?

I was early in my 2nd trimester of pregnancy and I was very short of breath – I kept telling my OBGYN that was also very tired… I used the words morbidly tired. Everyone kept blowing off my concerns as typical pregnancy symptoms. I told my running coach that I swore I’d be that girl running as a preggo – but I couldn’t. I just kept trying and each week got harder and harder and I would say.. Damn, this pregnancy is kicking my ass….

The end of May 2013 I felt an enlarged lymph node along my collar bone and pointed it out to my OBGYN that it was enlarged. He wanted to have an ultrasound of my neck performed and I thought… Well Geez I could perform an ultrasound of my own neck at work… so I did… I knew right away that I had cancer. I was hoping for a curable kind and lung cancer was definitely not on my list of rule outs. Within 3 days of me performing my ultrasound the shortness of breath worsened and I could barely stand unassisted – I presented to the ER and a chest CT scan was performed right away. That’s when they discovered liters of pleural effusion, too many to count lymphs nodes, diffuse lung masses on right and left lobes and a right femur metastasis. Our goal was to continue with the pregnancy – however after a week in the hospital it was determined that my clinical status was too poor to continue with the pregnancy. On the same day I had a D and E and a left pleurodesis. 06-7-13, worst day of my life.


What is a typical day like for you, living with stage IV lung cancer?

Two years later and I am still adjusting – out of the last 2 years I have spent about a 1 year of it on supplemental oxygen. Therefore I get winded fairly easy. I have to take breaks while getting dressed because the minimal effort to put my arms above my head makes me short of breath. I was able to spend 6 months traveling around visiting friends and family while I was on a clinical trial for Alectinib and that was amazing! I typically wake up and cater to the dogs and chickens – I try to keep myself motivated with writing and painting – currently that is harder as my lung cancer is growing – so I retire to the couch often. I attend art classes twice a week – I suspect most of the “ladies” in the class are more naturally retired vs. me medically retired! That’s what I call the other students – “the ladies.”

Most days - I spend several hours a day researching lung cancer – I look for treatment options, survivorship articles and lung cancer community postings – some days I take a cancer break – but it’s never a full break – given I feel it every time I try to do routine household chores.

Honestly – thoughts of the cancer and/or its impact creeps into ~ 98 percent of my day – but I try to put on a smile as much as I can. It’s almost painful to try to fill this section in… compared to my previous life I am doing nothing. Geez, before I was a super busy body – between work, working out and family!


What do you want people to know about lung cancer?

Anyone with lungs can get lung cancer. Even healthy, athletic never smoking pregnant women.


What brings you hope?

Knowledge – knowing that lung cancer research has started to gain its momentum allows me to feel hope that I could possibly live long enough for the next miracle drug to come down the pipeline.

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Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

Yesterday's post was on Anita Figueras' blog, SciFiKnitter, where she profiled lung cancer survivor Kelli Cathy Stramel Joseph.

Tomorrow's post will be on Dann Wonser's blog Dann's Cancer Chronicles, where where he will profile Gail Kock Lemaire.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

Day 16: Kelli “Cat” Joseph, Survivor. “If there was ever a time in history to get lung cancer, that time is now.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 16: Kelli “Cat” Joseph, Survivor
“If there was ever a time in history to get lung cancer, that time is now.”

Kelli, tell us about yourself.

I’m a 48 year old lung cancer survivor, currently NED (no evidence of disease). I am a wife to a gorgeous, caring, patient husband, and we are parents to a beautiful, loving, smart teenage boy who has been so resilient throughout the ups and downs of this cancer ordeal. He is amazing. I’m also a business owner. I have a bar called The Cuckoo’s Nest.

That sounds like a recipe for being very busy. Is it fun to be a bar owner?

Yes it is, and it’s even more fun now that the bar is smoke free. When I think of how much second hand smoke I breathed in from the age of 17, I’m very happy that smoking in my bar is now against the law.
...continue reading...

Day 15: Dr. Lucy Kalanithi, Lung cancer advocate and former caregiver. “Lung cancer happened to Paul, but it’s something we did together.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015
 

Day 15: Dr. Lucy Kalanithi, Lung cancer advocate and former caregiver
“Lung cancer happened to Paul, but it’s something we did together.”
Twitter handle:@rocketgirlmd

Who are you?

I am Paul Kalanithi’s widow, I’m a doctor, and I’m Cady’s mom. 

My husband was Paul Kalanithi, a neurosurgeon and writer who was diagnosed with stage IV lung cancer in 2013 and who passed away this year at age 37. Paul and I met and married in medical school at Yale and moved to California together 8 years ago to start our residencies. When he was diagnosed, our top priority (apart from the best medical care) was to clarify what was truly important to us and help him seek meaningful time. That included going back to work and, for him, writing (including the essay “How Long Have I Got Left?” in the NYT and working on a memoir). We’d always thought we’d have a child together at the end of residency and when he got sick, it was about that time. We decided we were still going to do it, despite Paul’s illness. So, I am also Cady’s mom! [Cady was born in 2014, 14 months after Paul was diagnosed with lung cancer, and 8 months before Paul passed away.] She brought us incredible joy.
...continue reading...

Day 14: Dr Anne-Marie Baird, Lung Cancer Researcher and Advocate. “Lung cancer can affect anyone, anywhere.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015
 
Day 14: Dr Anne-Marie Baird, Lung Cancer Researcher and Advocate
“Lung cancer can affect anyone, anywhere.”
Twitter handle: @BairdAM

What is your connection with lung cancer?
Both my grandmother and aunt died from the disease. My aunt died while I was researching lung cancer at university.

What does your typical day look like?
I am usually in the lab or labland (as I call it) and am active on the Twitter feed #LCSM. Outside of the lab, I keep an eye out for dangerous Australian wildlife!

What is something we might not know about you? 
...continue reading...