The road from caregiver to advocate


Katie Brown

Many people don't know that lung cancer is a disease that can affect anyone. One in 14 people will be diagnosed with lung cancer and over half of those diagnosed will be people who either quit smoking decades ago or who never smoked a day in their lives. Lung cancer can happen to anyone regardless of age, gender, race, health or smoking history. Its patients have felt stigmatized, neglected and unsupported in their communities. Lung cancer is the least funded cancer even though it kills more people each year than breast, prostate, pancreatic and colorectal cancers combined.

These were the statistics I read while Google searching the disease that had suddenly invaded our lives. I had fallen into the role of caregiver and patient advocate without any warning or training manual. It was the hardest job I've ever had and at the same time, the most rewarding.

When my dad was diagnosed with lung cancer in 2002, his diagnosis came out of the blue and we had no local support. The isolation of a lung cancer diagnosis was intense. With little treatment options, incredibly low survival rates and no support or resources specially for his disease, the odds of survival for him began to plummet. This was our devastating reality 10 years ago. My dad died 11 months and 21 days after his diagnosis and he fought fiercely to live every one of those days. I promised my dad then that I would never stop working to support those affected by lung cancer. And I haven't.

Today, 11 years later, I am the director of support and advocacy for the largest lung cancer nonprofit in the nation, LUNGevity Foundation. I have created and managed support programs for people impacted by lung cancer and survivorship conferences that take place nationally and regionally. But it's been a long road of advocacy.

I encourage people who feel a calling or mission to become advocates for what they believe in to make a plan and stay the course. We need more of you in the cancer community to be the voice for those who can no longer speak.

I do have a few pieces of advice:

Take care of yourself.

While you are caring for the life of someone your love, don't forget to take care of yourself. You won't be useful to anyone if you are burned out and exhausted. Fighting cancer and fighting for someone's life is incredibly hard. Mistakes get made when we are tired or emotionally charged. Don't forget to take care of yourself. You'll do a better job at being a caregiver to someone else if you do. Take care of yourself and ACCEPT help from others.

Find the unmet need.

In my case and with a disease like lung cancer, our immediate unmet need was support for patients and families. Eventually that turned into access to information about the disease and treatment options and more funding for research so that there can be more survivors. All of those unmet needs put together are HUGE but taken a bit at a time they can be addressed. I'm not a researcher or a doctor, but I can navigate a patient during their journey to find the answers they may be looking for. I wasn't a social worker or therapist, but I could create a peer to peer support resource for people to walk the lung cancer journey together and build ways in which patients and families could help themselves. Find your unmet need and come up with an action plan to address it.

Connect with others.

There are other caregivers, family members, survivors and advocates who share your passion to advocate for your cause. Seek them out and connect with them on message boards, websites, and advocacy groups in your local community. Have phone calls, twitter chats, and meetups to discuss ways you can raise awareness and make an impact. If one person can make a difference, image what a group of like-minded people can do!

Be gentle on yourself.

I wish I would have taken this advice more. As caregivers to those we love we tend to take every victory and every setback personally. We also sacrifice our health and needs while caregiving. I remember when my dad passed away thinking that I hadn't done enough to "save him", as if anything I could have done would have stopped the progression of his cancer. "I didn't search the internet enough. I didn't explore 3rd or 4th opinions. I didn't tell enough jokes, pray enough or keep up a positive attitude 100 percent of the time. He didn't try alternative therapies." And a dozen other what-ifs and second-guessing-myself thoughts that flowed through my mind.

Today, I know the outcome would have been the same no matter what I did then, and from that experience I take away the precious memories and moments I was able to share with him as his caregiver and his daughter.

Looking back now I know the landscape of this disease enough to know that having access to information and treatment options, access to clinical trials and medications for side effects will make the road smoother for someone else. I know that having others to talk to can alleviate feelings of fear and guilt and isolation. Those are the unmet needs I've been trying to address.

Seek out support for yourself and your loved one while you are actively walking through cancer. And when you are no longer caregiving and ready to be an advocate, surround yourself with others who believe in your cause, will support you and help you to succeed.

Finally, don't lose hope.

Even if things don't work out exactly like you planned, don't lose hope that one day there will be more. More support, more treatment options, more awareness, more research and more survivors. I absolutely believe that there isn't anything greater than hope. It picks you up when you've been knocked down. It hugs you when you feel defeated, carries you when you receive good news, and it's the whispered promise that everything you have done and everything that you will do, matters.

Katie Brown is the Director for Support and Advocacy for LUNGevity Foundation.


Chemobrain and late effects of childhood cancer


Kathy LaTour blog image

As many of you know we are running a story in the current magazine about ways to combat chemobrain. (You can read the article here.) I talked about Lumosity and its effectiveness and disclosed that it did have a cost. I am sure many of you have seen their ads around town and on the tube.

We got a letter from a mom who is caretaker for her grown son who just finished a bout of cancer. He has chemobrain and the cost of Lumosity is really not an option – even less than $100 a year. I know many of you can sympathize with her. She asked if they had a free version, but, of course, they don't. So, I did a little sleuthing and found some other brain training programs that are free and may help. Just put free brain training in your search engine and you will find a number of companies that don't charge. Determining which of the programs works best for you will be trial and error.

There are also a number of apps that have free games to play that are definitely brain games. The ones I have tried are all free but have enticements to get you to buy levels or help – or, in what I think is really maddening – to get rid of the ads that pop up regularly. I have dumped more than one of those. I like an app called Four Pictures, One Word that shows you four pictures that are somehow related and you have to figure out the word. Many of these can be played on your phone and keep your brain active while you are just sitting around.

Shelli Kesler, PhD, an assistant professor of psychiatry and behavioral sciences at Stanford University in Stanford, Calif., has published a small book on the topic, Improving Cognitive Function After Cancer, which can be found on Amazon for around $9. She offers some basic ways to compensate and tools to begin, such as a good message system on your phone to remind you when something needs to be done. She recommends setting routines and using self-talk to encourage recall as well as repeating what has been said to you. So if a doctor says take two pills a day and don't forget to exercise, then you say, "What I heard you say was that I take two pills a day and I exercise every day."

Another good book for building the brain is Make Your Brain Smarter by Sandra Bond Chapman, PhD, chief director at the center for Brain Health at the University of Texas at Dallas. Chapman goes into depth discussing the brain and how it works and suggests that more is not better – less when looked at deeply is better. Sounds like thinking to me. It is also available for under $20 on Amazon.

On Monday, January 27, I'll be discussing these and other options with Maryann Makekau and Rob Harris on the Because Hope Matters Talk Radio Show at 7 p.m. ET. Join us for some lively discussion around ways to overcome chemobrain. We'll also be talking about another topic in the current issue, that of the late effects of childhood cancer treatment. It's the adult survivors of childhood cancer that have given us the best research in areas of late effects. And we are gaining more and more information on what happens when children who had had cancer grow up.

Listen, call in with your comments because someone else will have the same question.


Zero shades of gray: Who's to blame for lack of brain cancer awareness?


Liz Salmi

As of 2013, nearly 700,000 Americans are living with a primary brain tumor. One of those 700,000 ... is me.

Unfortunately for us, brain and central nervous system (CNS) cancers make up just one percent of all cancers in this country. That translates into not only a lack of awareness, but also a lack of understanding. Most colleagues and new friends are shocked when they learn I'm a survivor.

"But you look so....normal" is a popular refrain.

What they don't understand is, I work hard at that normal. We all do. And I'm lucky.

Brain cancer symptoms are directly linked to the area in the brain where the tumor is located. As the tumor grows, it presses on the surrounding brain tissue, which in turn affects the functions controlled by that specific area of the brain. Side effects can be as diverse as headaches, changes in our personalities, difficulty walking, issues with reading and writing, loss of vision, mood swings, incontinence and seizures. Our symptoms run the gamut, and impact all parts of our bodies, because in the end, the brain controls everything.

And the symbol of our fight? A gray ribbon.

To be fair, we aren't the best advocates for our disease. Of the 700,000 of us living with brain tumors every single day, most of us are having a really hard time just walking, talking and remembering, let alone possessing the energy and wherewithal to serve as hopeful, media-friendly ambassadors of this deadly disease.

Using the hashtag #BTSM (brain tumor social media) allows the brain tumor community on Twitter to share what they experience when they learn of their brain cancer diagnosis, and everything that comes after.

But the sad fact is that ordinary people don't think about brain tumors. Ever. There is no high-profile 'awareness' movement for our deadly cancer, and the general public has no idea regarding the signs and symptoms of our disease.

"No one thinks about brain tumors until you or a loved one has one," tweeted @everydayleft.

So who CAN we blame for this lack of public awareness?

I blame the smart aleck who christened the first gray ribbon for the cause.

Ha, ha. I get it. Gray, for "gray matter." The brain has gray matter. Clever.

Except that, the color gray does not stand out. At all. Doesn't grab attention or motivate activism. It's the poor man's pink. And we deserve so much better. When I participate in brain tumor advocacy, and faithfully pin the gray ribbon to my shirt, it's virtually indistinguishable.

Can you imagine Kitchen Aid selling a $350.00 Artisan Series stand mixer for our cause? Delta Airlines inspiring research dollars for painting an airbus gray? An NFL referee drawing attention to the disease by dropping a gray flag? Because I can't. Even brain tumor nonprofits don't even bother asking us to wear gray during fundraising walks and events.

It's not fair to blame a color. But we can blame ourselves. A rebranding is in order here, and now is the time to do it.

More so than any other cancer, brain tumors have life-altering psychological, cognitive, behavioral and physical effects. In the last several decades, only four FDA-approved treatments have been made available. Four. This is outrageous, given that brain and CNS cancers are also the most expensive diseases to treat in this country.

This makes us worth the medical research dollars and this country's attention. It's time to harness that attention into action. Because our gray is getting us nowhere.

Liz Salmi blogs about living with brain cancer at She won the 2013 Community Leadership Award from the National Brain Tumor Society for her work to raise public awareness of the brain tumor cause. Follow Liz on Twitter at @TheLizArmy.


Fear of recurrence like no other fear


Kathy LaTour blog image
I wasn't even finished with chemotherapy when I had my first panic attack brought on by the fear that my cancer had returned.

I had one round of chemo to go when I made a phone call to an acquaintance about the use of the fellowship hall at our church. It was one of those calls where we were trying to organize two events that were supposed to occur on the same day in the same place. In the middle of the discussion she yawned, just as I suppressed my own, and we both laughed. She said something to the effect that she didn't know why I was tired but she was going through chemotherapy for breast cancer and was exhausted all the time.

"Me, too," I gasped, as we forgot all about the meeting and began comparing stories. Seems she was dealing with a bit more of an issue than I was because her cancer was in her spine; she was metastatic, she explained, and yada, yada, yada. I didn't hear anything else after the word metastatic.

Within 24 hours my back was in spasms of pain – real pain. I was sure I was dying from metastatic breast cancer. Even though I could intellectually connect my pain with our conversation, the connection was soon lost. My pain was my recurrence that had nothing to do with having just talked to someone who had metastatic disease. I had pain in my spine; that meant my breast cancer had metastasized. I was dying.

As I write this today, 27 years since my diagnosis, I can almost feel the pain. It was so vivid.

I called my nurse, Becky, and told her about the pain in my back and asked that she schedule a bone scan. She did.

Two days later my husband and I went in for the results of the scan and what I was sure would be confirmation that my cancer was back in my spine.

We arrived at the doctor's office and Becky put us in a room. A few minutes later she must have remembered why we were there because she popped back in the room and said, "By the way, the scan was fine."

At that instant the room erupted. My poor husband hissed at me to never do that again. I hissed back that he should spend some time in my body. And Becky said, in the ultimate understatement, "You guys were really worried, weren't you?"

Worried, no; sure I was dying, yes.

A bit of explanation about what this fear does to a relationship such as ours. I was the information processor in the family. My role was the researcher. I knew the details on where to go and what to do, and when I said something, it was true. So my husband counted on me for information, and when I told him information about my cancer, he believed me. So, if I said I was dying, he believed me. This was a new world for both of us.

We went home, and I noticed somewhere between the doctor's office and home that the pain was gone. No one will ever tell me the mind and body are not connected.

I continued to deal with fear of recurrence almost weekly for the first year. My triggers were the usual: a strange ache or pain (ANY ache or pain), a celebrity was diagnosed, a friend was diagnosed or learned her cancer had metastasized. Actually, any mention of cancer by anyone usually sent me into hours of "what ifs."

Remember that part of what makes fear of recurrence so difficult is that pain is the symptom of a real recurrence. I also had strong anniversary reactions that resulted in panic attacks. Holidays would often bring on depression – would this be the last one I would spend with my child?

My worst fear was around Easter, and I have no reason why except it was spring and new life was all around, reminding me once again that mine could be shortened at any moment.

My fear of recurrence persisted for years. I decided I would do a Thelma and Louise before I ever allowed my family to see me wither and die should my cancer recur. Then I had a friend who died of breast cancer and, while not beautiful, it was a healthy death, and it made me reassess my decision about my own life and death.

Then about three years after my treatment ended, I finally couldn't bear the fear any longer. In my support group, we called it crash and burn. I cried all summer. I talked to the therapist who facilitated our support group about how to stop being so afraid.

Then she asked me a logical question: What was I afraid of? I knew it was all about my daughter Kirtley and her life. I didn't want to leave her without a mother. I knew my husband would be a good father, but I wanted to be there. I wasn't afraid of dying, I was afraid of leaving my daughter.

My therapist suggested I think of ways to resolve that. So, I enlisted friends who would take my place in the event of my death. My friend Terry would be there for her education, assisting with school choices and any education difficulties Kirtley might have. She would be hands on to help Kirtley with her school work and to talk to her about learning and keep the joy of learning alive. Terry ran a Montessori school, and she loved learning.

Terry, knew what I meant when I called, and, through my sobs, asked her if she would be Kirtley's education mom. She said she would, of course.

Next came household skills, cooking, sewing - all the things I have never been able to do, but wanted Kirtley to do. I called her Godmother Diana who could cook on all four burners at the same time. Diana can knit and sew and make all kinds of things. She too said, "Of course."

Next came my friend Dianne who was already raising two girls, one of them my god daughter Allison. Oh, the shopping trips they took and the fun they had. I had a miserable adolescence in a family where my mom wanted to make my clothes, and she loved bright colors and stripes. There was no money for the beautiful fashionable dresses, but I was determined that my daughter would dress in the latest fashion.

Dianne said yes, she would be sure Kirtley was dressed like all the other girls when she hit adolescence.

My friend SueAnn was to be her spiritual advisor, the one to answer the questions about our mission in life and spirit's plan for us. A Methodist minister, she assured me, she would be present for Kirtley should I not be here.

When I called these friends, none of them tried to reassure me or tell me I was going to live to be 100; they just agreed to take that part of Kirtley's parenting if I died. It was amazing what it did for me. I felt free and almost buoyant about death. I talked to my support group and the therapist. What did it mean? Was it a sign that I was going to die?

No, she explained, it just meant that I had resolved my own death. She had heard the same thing from others who had crossed the invisible line from fear of death to acceptance of death. Did I want to die? No. Was I more prepared to die? Yes.

Kirtley will be 28 this month, and she can't cook or knit, and she hates to shop, but we have had a few good discussions about the spiritual parts of life, and she made it through college.

And I am still here. No longer afraid of what the future may hold.


When the unexplainable happens


Richard C. Frank
About six months ago, I received a call at my house from a family friend who was in distress. As a community oncologist, it is not uncommon for me to receive cancer crisis calls from family, friends or someone I may not even know. This call concerned the grandfather, whom I will call John, of a friend of one of my boys; the caller was the boy's mother, whom I will call Donna, daughter of the patient.

I had actually known about the situation for some time. Donna and I had briefly talked about it at little league games or at places where parents run into each other. John had been battling liver cancer for over four years. He was being treated at a large, well-known cancer hospital and the doctors there had done an excellent job of keeping the cancer at bay. Over the years, parts of his liver had been surgically removed, others boiled with hot probes and many blood vessels had been choked off to deprive the cancer of oxygen. When these local measures no longer worked, he took chemotherapy and like a good soldier, even enrolled in clinical trials testing experimental ways to treat the cancer.

But John felt that the oncologist taking care of him now was mainly interested in enrolling him in study after study and that none of the chemotherapy or research treatments had done any good. The doctor did not answer his questions, talk to him about prognosis, or treat his ever-increasing pain. By the time his daughter reached out to me, the cancer was growing widespread in his liver and lungs, and John was told to enroll in a hospice program close to home. The center could not do anything more for him. They made him an appointment to return in three months, if he was still alive. Needless to say, the patient and his family were distraught.

Although I did not relish caring for a friend's dying parent, I agreed to see John in my office. I was thinking that I could at least make him feel cared for and supervise his end-of-life care. As John walked into my office and forced a smile, he appeared to be a man in the middle of the ocean holding onto a sinking boat. His wife and children filed in somberly. We started out by getting acquainted, talking about his life a bit and what he wanted most for the remainder of it; we even laughed some. John said he accepted that he was dying, that he could barely get out of bed and had no appetite, but that he just wanted to feel better if possible. He wanted to be hungry again, eat his favorite pasta meal, and be able to move without severe pain.

I first addressed his pain by prescribing a steady, more potent pain regimen. I had to assure him that taking narcotics would not make him an addict, something he feared and which greatly frustrated his family. Next, I was concerned about his shortness of breath, so I ordered a lung scan which revealed blood clots in his lungs (pulmonary emboli) in addition to the tumor deposits; I prescribed an injectable blood thinner, called enoxaparin (Lovenox). He seemed to immediately improved with these changes but he soon developed severe pain in his hip and I diagnosed new bone metastases. I convinced him to undergo a course of radiation therapy (he did not think it was worth the trouble), which fortunately did greatly diminished his pain.

I was relieved that John's pain and breathing improved though his appetite still remained poor. I was not sure how much time he had left. Without us noticing, the days led to weeks which somehow led to months as John's condition gradually improved. He was getting out of bed easily now, going shopping with his wife, even mowing the lawn again. And he was finally eating more; his gaunt appearance began to fill out toward normal. His mood was much less depressed. It was as if the grip of death had given him a respite and left his body.

It took us all by surprise. The family asked, "So, what's going on with his cancer?" I said frankly that I did not know but that we weren't treating it so I couldn't conceive that it was being controlled. But it is not usually the case that a cancer progresses and a patient's condition improves so I was indeed perplexed. Furthermore, I did drawn a tumor marker of liver cancer, called AFP, measurable from the blood. When I first met John it was over 7,000 (normal less than 5). Now two months later, it had inexplicably dropped to 300. I told John and his family that I needed confirmation and another measurement before I believed that huge drop. Sure enough, two weeks later the AFP was 220. In order to see what was happening with the cancer, and to answer their question more accurately, I sent John for a CAT scan. The result was also inexplicable but wonderful: the tumors in his liver and lungs had stopped growing and were actually a little smaller! I was incredulous.

"How could John's cancer be shrinking?" I asked myself this question over and over again as I tried to provide the family with some answers. Could it be the Lovenox? There have been no reports of cancer improving with this blood thinner, though there has been some talk of this possibility in the medical literature. Could it have been the radiation therapy? There have been rare reports of radiation therapy to a focal cancer deposit leading to regression of metastatic cancer in the rest of the body due to activation of an immune response (called an "abscopal effect"). Could it be John's change in attitude, from depression and hopelessness to a feeling of lightness and the joy of living? There certainly has been alot written about a person's "attitude" toward cancer and how important it is to maintain hope. Could it be my role as a trusted physician? I only thought of this after Donna gave me this passage from the book Anatomy Of An Illness As Perceived By The Patient (1979, W.W. Norton & Company) by Norman Cousins:

A prominent physician recalled of his physician father: "The instant he entered the sick room, the patient felt better. The art of healing seemed to surround his physical body like an aura; it was often not his treatment but his presence that cured." Francis Peabody's famous remark, "The secret of caring for the patient is in caring for the patient," is another way of stating that there is a miraculous moment when the very presence of the doctor is the most effective part of the treatment."

I was certainly flattered by that sentiment but could not claim the credit here. No, John's improvement is strictly in the realm of the unexplainable. Regardless, we all shared a joyous moment when the results came in. In contrast, John experienced a different reception when he returned three months later to his original hospital, to which he had considerable loyalty. John and his family were looking forward to seeing the pleased look on his doctor's face but were rendered speechless when he did not comment at all on John's miraculous improvement. "He told me their CAT scans were much better and that I should go for more chemotherapy there." "

Chemotherapy! Can you believe that?" John released a rare expletive as he relayed the encounter. We were all disappointed and surprised by this response.

It is now six months since I first met John, and he continues to thrive. I do not know how much longer he has or why he is enjoying more time than expected. But when you are dealing with cancer and the unexplainable happens, in a good way, I say go with it.

Richard C. Frank is a medical oncologist at Norwalk Hospital in Norwalk, Conn., and is the author of Fighting Cancer with Knowledge and Hope (Yale University Press 2013, 2nd edition).


What's your cancer slogan?


Carrie Corey
We've all seen cancer slogans on t-shirts, buttons and baseball caps. If you've received a cancer diagnosis, odds are good you've also heard them from your family and friends.

My first go-round with breast cancer, I wore my hot pink Cancer Sucks t-shirt with pride to my chemo treatments. A few years later, life is more challenging with my metastatic diagnosis and trying to live One Day at a Time.

Two weeks ago, I attended my uncle's funeral; after the service, we were traveling to MD Anderson for a PET scan and doctor's visit. During the service, I was looking at Uncle Bill's children, grandchildren and great-grandson.

"Hmmm.....let's see....if I was 31 when Henry (my son) was born, I'll be 36 when he starts kindergarten. If I'm 49 when he graduates high school, how many years until I could be a grandma?"

There I was, sitting second pew, when a familiar dark cloud slithered into my thoughts. "Will I live long enough to meet my grandchildren?"

My mom will tell you no one knows how much time they have; she could get hit by a bus tomorrow. While that may be true, some of us are standing in the middle of the road, making us more likely to get hit by a bus than the average person. Most people assume they'll live a long and healthy life, but when you're in my boat, it takes concerted effort to make that assumption.

It's been almost a year and a half since I was first deemed incurable. Henry was only a few weeks old and completely dependent on us, but I was the one that needed him. Even when the dark thoughts felt all consuming, I had to Put One Foot in Front of the Other and go fix him a bottle! He continues to give me purpose daily, making it impossible for me to hide under the covers.

My goal is to Enjoy Life in the Now, which is much easier said than done. Most days I choose to keep busy with being a wife and mom – balancing trips to the grocery store and play dates, with oncologist appointments and medicine side effects. I am still responding to my current medication, giving me 12 weeks until the next trip to Houston. Until then, we'll be enjoying summertime in the backyard and trying to stay cool in the Texas heat, just like a "normal" family would.

From now on, when the black cloud sneaks into my thoughts, I am going to follow Henry's lead. At 18 months old, my son doesn't look at the big picture or know what he'll be doing next year or even this afternoon. Every morning, Henry wakes up smiling and ready to tackle the day by running around like a wild man, terrorizing the dogs and trying to jump off the back of the couch.

I can't think of a better example of Live for Today, can you?

Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.


Surrogacy: Becoming a parent after cancer


Jennifer Nassar
In 2010, Lindsay and Tony Giannobile returned from a vacation in Italy, their last "hurrah" before starting a family, but the life-changing news they received wasn't what they were planning for.

At 28 years old, Lindsay received a diagnosis of stage 3 HER2-positive breast cancer. Listening to Lindsay talk about her struggles and determination to not let a cancer diagnosis stop her from becoming a mother, I was inspired. Her story could give other cancer patients and survivors hope of having or continuing to have a family.

"It was our dream to have a family," Lindsay says. Unfortunately, like many other young adults with a cancer diagnosis, Lindsay learned infertility was a risk with her treatment.

From what I've learned, not all patients are given upfront information about potential fertility risks before therapy. If I had treatment and learned, after it was too late, that I could've done something to be able to have children of my own one day, I would feel denied the right and ability to have biological children.

With chemotherapy, the possibility of infertility may depend on age, type of drug and drug dose. Ifosfamide, chlorambucil and cyclophosphamide are a few drugs that can damage eggs. High doses of radiation therapy can also lead to premature menopause by destroying eggs in the ovaries. Even radiation not aimed at the reproductive organs can still cause damage by bouncing rays inside the body. Several options are available for women who want to plan for a family after treatment, including egg or embryo freezing, using an egg donor, surrogacy and adoption, to name a few.

[Read "What to Expect When You're Not Expecting"]

The couple chose to freeze embryos before Lindsay started chemotherapy in late 2010 with the hope that she might be able to carry them after her year-long treatment of chemotherapy, radiation and surgery.

"We're very blessed that I had babies on the brain," she says. "That really was our only chance at the time."

The Giannobiles' plan for Lindsay to complete therapy, be finished with cancer and have a child was derailed when, a year after starting treatment, she learned the cancer had spread to her bones. The cancer, now stage 4, ultimately means she will stay on treatment indefinitely.

"Tony kept saying, 'God will make it so that we can be parents'," Lindsay says, but at this point, the couple had very few options of starting a family. Surrogacy was their first choice. They would have tried adoption, but Lindsay was told by multiple sources that they wouldn't qualify to be adoptive parents because of her cancer diagnosis. "We wanted our biological baby, and we believed that God's plan for us was just that since we were able to freeze embryos successfully," she says.

Their first order of business: find a surrogate.

Lindsay and Tony reached out to surrogacy agencies and sent emails to friends and family, asking if they knew anyone who might be willing to carry their child.

The Giannobiles received a response from Kristen Keighley, who she met during treatment.

"She said, 'I can do this, I want to do this for you,'" Lindsay says. "We got things started from there."

Lindsay and Tony Giannobile with their surrogate, Kristen Keighley

Surrogacy is one of the most expensive options for women unable to conceive. It can cost anywhere from $10,000 to $100,000, which includes doctor appointments, embryo transfer, surrogate compensation and legal fees. Most costs are not covered by health insurance.

[Read "The Price of Parenthood"]

To help them finance the surrogacy, friends of the couple held fundraisers. Lindsay's friend, Matt Russo, raised $1,000 for every mile he ran in a Columbus, Ohio, marathon. The final total neared $30,000.

On May 15, Lindsay and Tony's son, Rocco, was born via caesarean section. Lindsay says words can't describe the experience of watching Rocco come into the world. It is something she and Tony will always "vividly remember."

Tony and Lindsay Giannobile holding their son, Rocco

"To think our baby was frozen for about two years, then developed in someone else's body is just an absolute miracle," she says.

Lindsay describes their surrogate as a "selfless, selfless person." Kristen, a single mom, works and attends school full-time. "And to add one more thing to her plate, she carried our child."

Lindsay isn't ashamed of her decision to use a surrogate and feels surrogacy isn't talked about enough.

"I think our generation has gotten better with talking about cancer, but surrogacy is a different story."

Lindsay encourages others to not give up on the dreams they had before cancer. "Look at the things that you thought your life would consist of before cancer" she says. "I think that is so important."

For more information on requirements, costs and support for surrogacy, here are a few resources:

> All About Surrogacy
> Circle Surrogacy
> The National Infertility Association

You can read more about family planning with cancer in CURE's Summer issue article, "Managing Expectations."


Do you talk to your doctor about cost of care?


Elizabeth whittington blog image
Cost is one of those "difficult conversations" between a patient and a physician, right up there with end-of-life discussions. Does that surprise you?

An article posted online from the Journal of the American Medical Association addresses the issue of medical cost in "First, Do No (Financial) Harm."

"... seemingly simple decisions that physicians make about testing could directly lead to thousands of dollars in out-of-pocket costs," the authors write, noting that physicians shouldn't assume that high medical costs are a known and unavoidable fact of life for all patients. The article encourages physicians to optimize care for individual patients in regards to cost, a strategy used commonly to treat cancer. The article is geared toward a general medical audience, not specifically cancer, so the examples it provides may not apply. However, the overall theme is that physicians should have a financial conversation with their patients, including if patients are worried about cost and are understanding the financial ramifications of screening and treatment.

"Too often physicians choose less than ideal options for their particular patients not due to a lack of caring, but rather a lack of knowing. This includes not prescribing generic or other insurance-covered drugs when appropriate. Lack of awareness about the opportunities to provide higher-value care should no longer be an allowable excuse."

While the article is geared toward physicians having that financial conversation with their patients, this should also encourage patients to initiate the discussion. Asking for lower cost treatment alternatives, generics or making sure their doctor works within their insurance plan are conversations that patients shouldn't be ashamed to have with their physicians.

At the annual meeting of the American Society of Clinical Oncology this year, a study examined how likely insured patients were to talk to their physician about treatment cost. Nearly half of the 119 patients surveyed expressed a desire to discuss the issue, but only 21 percent had actually done so. Of that 21 percent, half felt the discussion helped lower their treatment costs.

In another study of women with breast cancer, 94 percent believed cost should be discussed between patient and physician, but only 14 percent reported ever having the discussion.

"To provide truly patient-centered care, physicians can live up to the mantra of 'First, do no harm' by not only caring for their patients' health, but also for their financial well-being," the authors conclude.

Do you discuss cost with your physician? And does cost affect your treatment decisions?

Stay tuned for more on this subject. CURE is producing a supplement on the cost of cancer care later this year, which will include tips and resources to help manage the financial burden of cancer.


Young, a new mother and metastatic


Carrie Corey

Ever heard anyone say it was a great time in their life to get cancer? No! You'll usually hear people talk about their diagnosis in reference to some other major life event. Either "My daughter was getting married," or "I had just started a new job when I found my lump."

The first time I was diagnosed with breast cancer, it was a few months after I married the love of my life. We married on Valentine's Day, 2009, and honeymooned in March. I turned 29 in April, and I was diagnosed in May. After a bilateral mastectomy and 18 weeks of chemotherapy, the year was coming to a close. After a particularly rough day, I looked at my husband and joked, "Well, 2009 kind of sucked. 2010 has GOT to be better!"

Chris responded very matter-of-factly, "I for one refuse to think of 2009 as bad - it's the year we got married." He was right then, and now he is even more right.

How many years can be defined as cancer years? 2012 can't be known as the year of my recurrence. It's the year we adopted Henry.

I refuse to let cancer define my life or the way I think about it.

When you have metastatic disease, you have to shift your way of thinking. I will always be in some form of treatment. We are not marching toward the light at the end of the tunnel like I did with the first go 'round. This is not a temporary situation or something I am going through. It's not the path I would have picked, but it is the hand that I have been dealt. And so, THIS IS MY LIFE. I can't think of it in terms of weeks between scans or times in or out of the chemo chair.

Right now, I'm not sure if I am responding or progressing on my new medication (anastrazole) since my last scan had mixed results. But I have a little guy who is learning how to walk, and we just bought and moved into a new house. Cancer is just going to have to take a backseat. I'm too busy to stress about it today. I need to buy a new shower curtain and pick out paint colors for Henry's room ... I'll worry about cancer in a few weeks when I check into the PET scan waiting room.

Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.

Corey Family


From helpless to hopeful


Carolyn Zimmerman
"What is this lump on his neck?" asked our family physician. Just past six and a half months old, our baby, Jasan, had a few nights of intense crying followed by nausea and diarrhea. That prompted a visit to the family doctor, Richard L. Huffer. He was an amazingly thorough doctor and as he was examining Jasan, he kept going back to Jasan's left neck over and over again. He found a lima bean-sized lump on Jasan's left neck. I told him that I had given him a bath just before leaving home and didn't notice anything out of the ordinary. He guided my right index finger over the left neck and sure enough there was a lump. He told me it might be a gland that was infected and that a course of ampicillin would probably do the trick.

The next week was somewhat normal for an almost seven-month-old baby; he ate, played, got changed, slept and fought me every inch of the way when it came to taking the ampicillin! The lump didn't really shrink; in fact I thought it was getting bigger, so we were back in the doctor's office before our next appointment. Dr. Huffer had spoken to a surgeon at Loma Linda University Medical Center and knew that it was time to refer us to him. I asked him if it was serious, "like cancer serious?" He handed Jasan to the receptionist and did his very best to calm me. He told me to let the Loma Linda guys check him out; told me to call him as soon as I knew a diagnosis, gave me a hug and sent us home. I packed a couple of small bags for the two of us and then with Jasan on the floor grabbing at the dog's tail, I just sat on our bed and bawled. I just felt so helpless.

I made the necessary phone calls to family and friends and then enlisted the help of my sister-in-law, Mary, to make the trip with us the next morning. She was great at tending to her little nephew as we drove and kept my mind off the challenge of the day. My husband, Jim, would join us the next afternoon.

After the initial examination by the pediatrician, we waited to see the pediatric surgery team. By this time Jasan had a mass the size of a small egg on his left neck and was extremely agitated. Jim joined us late in the afternoon with the news that he was staying with us for a few days until we knew a little more about what we were facing.

Jasan was admitted to the hospital that evening and surgery to excise the lump was scheduled for the next morning. Paperwork had to be signed that evening and we wanted to hear any news from the surgical team when they made rounds. They told us the surgery would be about four hours. It was closer to six. They also told us that when he came out of surgery he would be hooked up to tubes, monitors, lots of bandaging on the neck and most likely would still be groggy from the anesthesia. After surgery, his crib was pushed out of the surgical elevator, he saw his daddy and all we heard was a very loud "dada dada dada" and saw no tubes, no monitors and only a small bandage on his neck. We were elated.

A frozen section during the surgery gave us a preliminary diagnosis of neuroblastoma, a sympathetic nerve cell cancer. The formal diagnosis came about a 10 days after surgery when reports were returned from various labs across the country.

Neuroblastoma. Tumor. Malignant. Radiation. The fight was just beginning!

The following days were filled with more blood tests , 24-hour urine collections, tomograms, esophagogram, radiology studies, bone marrow test (this was the worst so anesthesia ... just blood-curdling screams from Jasan as we waited for him just outside the procedure room). The oncology and medical teams wanted to discuss treatment with Jim and me. We listened to the information they presented. Our decision would ultimately determine our baby's future health. We both felt so helpless. What should we do?

After two weeks we were released to go home. We had to return three days later to see the radiation therapy team. At that appointment Jasan was fitted with a clear Plexiglas mask that could be strapped to the table in the radiation chamber so that he couldn't move his head during the treatments. This was worse than hearing those blood-curdling screams during the bone marrow test.

Jasan cried and screamed and yelled "mama," "dada," and "no, no, no" through a series of 25 radiation treatments. Subsequently, he fought thyroid cancer at age 15 and at age 21 had a recurrence of thyroid cancer. Three cancers would seem more than enough for one child, yet in between were numerous scares, hospitalizations, more surgeries, illnesses, regular testing; all due to the side effects of radiation.

Did we make the best decision? We think that we did. The oncology team told us we could do nothing and take our chances of Jasan living a few more months or we could choose radiation and that would give him at least 18 more months on this earth and possibly side effects through the years.

Jasan has surpassed those 18 months by three decades plus and now serves as a cancer advocate helping others meet their own challenges. We know it hasn't been easy for him or for us, but we were always by his side and that will never change.

Note: Jasan's neuroblastoma was diagnosed in 1976. We lived in a small town of about 25,000 people. There were no support groups, no major medical centers and we didn't know anyone that had a child with cancer. We traveled an hour and 15 minutes each way from Indio, Calif. to Loma Linda University Medical Center in Loma Linda, Calif. for each appointment, treatment and hospitalization. Jasan's case was the 26th neuroblastoma in the U.S. It was the first tumor recorded on the neck, most are found in the stomach. Thank you, Dr. Huffer and LLUMC for saving Jasan's life!

Carolyn Zimmerman is the mom/caregiver of a three-time cancer survivor. Her experience covers caring for a six-month-old baby diagnosed with neuroblastoma, a 15 year old diagnosed with mixed papillary and follicular thyroid cancer, and a 21 year old diagnosed with recurrence of the thyroid cancer. She says the treatments, surgeries, scares, support and dealing with the medical world have been a major part of her son's life and directly affected her role as mom/caregiver.


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