Meet Annamarie

A suspicious spot was found on a chest x-ray Annamarie had in 2010. It was supposed to be a routine screening before an elective surgery procedure, but it led to a CT scan with more bad news. On Mother’s Day, she received a call from her doctor – there was a cancerous tumor in her lung.

“I’ll never forget that day,” Annamarie said. “When your doctor calls you on a Sunday, you know it’s not good. It sure ruined Mother’s Day.”

A lot more test followed, and then there was surgery to remove the tumor and part of her lung. “There was no time to think about it. It all went so fast.” Having COPD (Chronic Obstructive Pulmonary Disease) made Annamarie’s year-long recovery more arduous.

Then, in 2014, she got sick again and her health care team thought the cancer had returned. “I had pneumonia and blood clots in my legs, but I never gave up hope,” said Annamarie. Fortunately, after numerous tests, no cancer was found.

Annamarie recently started attending Cancer Support Community’s lung cancer support group. “No one can understand your cancer journey, but it helps to be around others who have the same issues,” she offered.

Annamarie had attended yoga classes with Abby in the past, and when the COVID-19 pandemic required social distancing, she decided to try the virtual programs at Cancer Support Community. “It has helped a lot to be able to participate,” she noted. “With my age and health concerns related to the virus, I can’t go out. COVIS is a lung disease and I already have compromised lungs, so it’s a real concern.”

“The virtual programs have been a Godsend for my husband and me,” Annamarie offered. “We’re both extremely appreciative that they’re being offered.

For more information on how you can support our Virtual Community, please visit https://cancersupportohio.org/get-involved/facingcancertogether/

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A suspicious spot was found on a chest x-ray Annamarie had in 2010. It was supposed to be a routine screening before an elective surgery procedure, but it led to a CT scan with more bad news. On Mother’s Day, she received a call from her doctor – there was a cancerous tumor in her… Read more.

Mesothelioma Isn’t Going Anywhere

By: Devin Golden on December 5, 2019

For more information please visit, https://www.mesotheliomaguide.com/mesothelioma/

In the latter half of the 20th century, the general public learned of the dangers of asbestos. They learned the substance is, in fact, a carcinogen, one that can lead to aggressive diseases such as mesothelioma.

The awareness of the harm caused by asbestos led to increased regulations in the United States and scrutiny of businesses that used the mineral. Most people expected asbestos-caused diseases like mesothelioma to top off early in the 21st century and eventually fade into obscurity.

That result has not happened — nor will it any time soon.

According to the World Journal of Surgery, pleural mesothelioma cases increased from 2004 to 2014. The publication analyzed the National Cancer Database’s information for incidence rates during this time. The result from this examination shows that mesothelioma has become more prevalent in the United States.

National Cancer Database on Mesothelioma

In 2004, there were 1,783 pleural mesothelioma cases in the country. In 2014, there were 1,961 reported cases. That’s an increase of around 10%. Pleural mesothelioma only accounts for between 70% and 80% of all mesothelioma cases. Peritoneal mesothelioma and pericardial mesothelioma comprise the other 20-30% of cases.

According to numerous sources, including the Centers for Disease Control and Prevention, there are usually between 3,000 and 3,300 new mesothelioma cases each year. From 2012-2016, there were on average 3,253 new cases each year. In 2016 alone, there were 3,096 reported mesothelioma cases.

If we follow the rule that “between 70% and 80% of all cases involve pleural mesothelioma,” then there were between 2,100 and 2,500 pleural mesothelioma cases in 2016. Like said earlier, this disease isn’t going away. Mesothelioma incidence is stagnant, if not increasing, year to year.

But …

Mesothelioma Treatment Is Improving Science continually evolves, which means treatment for diseases continuously improves. Mesothelioma treatment, in particular, is getting better, which is a positive for patients and their loved ones. Earlier in 2019, The U.S. Food and Drug Administration approved the Novo TTF-100L medical device for pleural mesothelioma treatment. It is limited to humanitarian use device distinction, but the approval is a significant moment for mesothelioma patients and doctors.

Peritoneal mesothelioma treatment is expanding as well. Many patients receive cytoreductive surgery, plus heated intraperitoneal chemotherapy (HIPEC) immediately after the operation. In a study published by the Annals of Surgical Oncology, around 55% of participants who underwent this treatment combination survived for at least three years. Roughly 37% survived for at least five years.

This study only included a few peritoneal mesothelioma patients, and other studies have reported different percentages. However, they are all close to the following:

· Between 50% and 65% for three-year survival

· Between 35% and 47% for five-year survival

While these figures are promising, a new method shows even better survival rates.

Dr. Paul Sugarbaker of MedStar Washington Hospital wrote an article for Translational Lung Cancer Research about long-term intraperitoneal chemotherapy. Sugarbaker, an esteemed peritoneal mesothelioma specialist, said that using this method in addition to cytoreduction and HIPEC has increased life expectancies for many people.

According to his report, of patients who regularly received this treatment, around 70% survived for at least five years. That’s great news for patients.

Wait! There’s more good news.

Mesothelioma Patients Undergoing Treatment More Often

The best route to healing from mesothelioma is undergoing treatment. Surgery is the first choice, followed by chemotherapy and radiation. If more patients receive medical help, then more of them will survive for longer, right?

The National Cancer Database’s figures back up this theory.

In 2004, treatment and survival rates were as follows:

· Approximately 34% of pleural mesothelioma patients underwent treatment.

· Around 37% of them survived for at least one year after diagnosis.

· Roughly 9% survived for at least three years.

In 2014, the rates were better:

· Around 54% of patients received treatment.

· Roughly 47% survived for at least one year after diagnosis.

· Approximately 15% survived for at least three years. So more people are getting treatment for their mesothelioma, and more people are surviving for longer after diagnosis.

How to Find Mesothelioma Treatment

We at Mesothelioma Guide can help patients find quality treatment and potentially extend their lives. Our patient advocate and registered nurse, Jenna Campagna, has connections to the top cancer centers in the country.

If you or a loved one has mesothelioma, remember that treatment now is better than ever before. Jenna works with patients every day to improve their quality of life and prognosis. Email her at jenna@mesotheliomaguide.com if you wish to explore your treatment options.

About the Writer, Devin Golden

Devin Golden is the content writer for Mesothelioma Guide. He produces mesothelioma-related content on various mediums, including the Mesothelioma Guide website and social media channels. Devin’s objective is to translate complex information regarding mesothelioma into informative, easily absorbable content to help patients and their loved ones

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By: Devin Golden on December 5, 2019 For more information please visit, https://www.mesotheliomaguide.com/mesothelioma/ In the latter half of the 20th century, the general public learned of the dangers of asbestos. They learned the substance is, in fact, a carcinogen, one that can lead to aggressive diseases such as mesothelioma. The awareness of the harm caused… Read more.

Lessons from a Cancer Patient During a Global Pandemic

Written by: Kate Williams

One of the things that cancer patients talk about when they get together is where they were when they “got the call.” The call that turned life upside down. The call bearing the worst health news you could imagine. Absolutely nothing prepares you to hear “you have cancer.”

It is a seismic slap. You stumble from the force. The shock almost knocks the wind out of you. The sting remains. Time passes. Your body remembers. Apprehension sets in when you think of it.

Cancer is traumatic.

My cancer diagnosis was unwanted, unwelcome, and uncontrollable. I ache for my life before cancer so deeply that my heart physically hurts. The trauma thrust upon me by my cancer diagnosis is at times physically and mentally paralyzing. Each day I force myself out of bed and face my new reality. In order to survive each day in my new life I was compelled to let go of what I expected my life to be this year. It’s a daily chore. I trained myself to face the world each day with a smile on my face and hide the isolation that is cancer as a young adult. The pain is dulled at times, but the wound is still fresh. And deep.

Having a cancer diagnosis dumped into my lap was coupled with two big emotions that I am still learning to live with and manage effectively in my life: trauma and grief. To cope with cancer, I have had to mourn my old life, the life I had before diagnosis. The expectation that I would spend this year bonding with my sweet baby with a full head of hair while seamlessly working and mothering was ripped from me. I had to let go of the plans I had to indulge my children this year. The idea that I had worked and saved and could finally relax a little with my family now seems so foreign that it could be someone else’s life.

The trauma of this diagnosis is the everlasting feeling that I allowed myself to be so deliriously happy, and this demonic disease caught me off guard. The seismic slap came out of nowhere. If I ever let my guard down again, another big slap could be waiting, lurking, ready to hit me at any time. The anxiety that comes from this trauma is persistent. Headaches used to be headaches. Maybe the indication that I drank one glass of wine too many the night before. Now, a headache might be a sign of metastases to the brain.

As cancer patients, we are forced to accept that life is unfair. Our lives have been upended by brutal changes. We are expected to accept this stroke of misfortune and put forward a positive outlook for our friends and family. We cannot tell them about our anger. They should not see how deeply we are truly suffering. We have to manage our torment and manage their feelings because our pain, justified and decadent as it may be, is a buzz kill.

We have to learn to view our existence through a new lens. Devastating but true, there is no return to life before cancer. Cancer patients learn to move forward. We learn to connect to others with similar experiences. We learn to thrive. We learn to survive.

As if cancer was not enough, I, like every other human across the world, am watching in horror as this pandemic is forcing humanity to grind to a near screeching halt. In an effort to stop the disease from spreading we have all been asked to give up life as we know it, at least for a while.

I watch the world recoil as the pandemic changes our human experience and somehow I remain eerily calm. I feel like a spectator watching humanity adapt to a new reality. I am not in the fishbowl this time, not the recipient of pity stares and cancer word vomit.

Reactions of my friends and family to these grossly unwelcome changes presents a bouquet of emotions that are oddly familiar to me. The anxiety of the unknown. The stress of loss of income. The social and mental isolation. The grief for what the year 2020 should have been.

The consequences of humans staying home for a few months and not safely being able to gather in large crowds are sweeping. Brides and grooms are cancelling weddings. High school seniors are missing their proms and graduations. Families are separated from their loved ones in long term care facilities. Folks who never considered themselves to be “old” are finding themselves lumped into a population deemed particularly vulnerable to the disease. Restaurants are closed. Rent cannot be paid. Retirement savings are dropping again for nervous savers who just got back on their feet after the 2008 crash. Jobs are lost. Money is tight. Stress is consuming.

Humanity is experiencing trauma. Humanity has been slapped and is struggling to recover from the shock.

And yet, humanity seems to be having a very hard time accepting how profoundly unfair life is.

The grief that our friends are experiencing for their old lives, cancer patients know well. We know that life is not a guarantee. Like us, people have been forced to make changes, difficult and uncomfortable changes, changes that affect their mental health, finances, free time with children, happiness, and self-worth. Lives will be forever altered. The trauma from this pandemic will be etched on those of us able to recall it.

Considering the silent and positive heroism Americans expect from their cancer patients, American reaction to these changes has been a mixed bag. Some people can accept that life is not a guarantee. Some have lived misfortune and know it does not discriminate. Some use the grief for what this year could have been and attempt to create a collective force more powerful than an invading threat. Some even find it patriotic and pitch in to help in any way they can, harkening back to a time when Americans proudly fought a common enemy. Folks across the country are donating time, materials, and even a “Rosie the Riveter” effort to aid our beleaguered health care workers.

Others find it beneath their “liberty” to adapt to changes that will save lives. People are angry about the effects on their income. On their assets. On the economy.

Of course, these changes are overwhelmingly unfair. It’s unfair to lose income due to a viral outbreak. It’s unfair for life as we know it to change. It’s unfair to ask everyone to stay home to protect those who are more advanced in age or immunocompromised. There is serious trauma in job loss. There is serious trauma in being broke. There is serious trauma in not being able to pay bills. I have been there, and the scars are seared in my consciousness.

Society will be traumatized from the severe economic, social, mental, and physical costs of this outbreak, and the effort to quash it.

But it is criminally morbid and cruel to suggest that “life should return to normal” for the sake of “the economy” before the viral threat has passed. It comes with a cost: American life.

I am stunned, angry, and deeply hurt at this suggestion.

There are thousands of scared cancer patients across the country who have already been dealt a hand that is profoundly unfair, and now we have to watch, fighting for our lives, while people selfishly complain about “the market.” Treatment plans have been changed, chemotherapy regimens are delayed, surgeries are rescheduled. Patients with otherwise treatable cancers will die and patients who would have passed peacefully surrounded by loved ones will die alone.

Folks without compromised immune systems who level these complaints perceive themselves to be somehow superior. Even if by the random stroke of fortune. These folks fail to consider that a seismic cancer slap can happen to anyone, anytime, anywhere. Cancer does not care.

When I was first diagnosed, people practically fell over themselves to show support to let me know I was loved. But in the time of a global pandemic my life has suddenly become a mere economic cost. A sacrifice at the feet of the almighty market. Capitalism comes with a cost and if lives of the immunocompromised and elderly are one, so be it.

Instead of hustling back to work and casting us aside, there is wisdom in the experience of cancer patients. The helplessness, grief, trauma, and anxiety that people are experiencing with Covid-19 has already taken host in our lives.

Most importantly, don’t take any of the advice you have given us. As a cancer patient, I have been told to “BE POSITIVE” more times than I can count. Despite my urge to hold a mirror back to everyone who has ever told me this, cancer has educated me that hollow advice should be spared. It vastly oversimplifies the experience of trauma and grief to just wax positive over the pain.

Instead, understand that we choose how we respond to this experience and how it will shape our lives going forward. We have every right to be angry, but let the anger ignite a fire that propels us forward.

We have to learn to view our existence through a new lens. Acknowledge the trauma. Air it out because holding it in is even more difficult.

Devastating as it may be, there is no return to our lives before this global pandemic. The change is unwelcome and unwanted, but it is here. We need to learn to move forward. We are so fortunate to be able to connect to others and share our experiences. We will learn to thrive during the pandemic. We can and will learn to survive.

Perhaps we have the misfortune of living in a time with a global pandemic. But perhaps we have the foresight to see that these changes are not the death of us. We are survivors.

Author’s note: The photo at the beginning of this piece is of me in the middle of chemotherapy. At the end of four vicious rounds of AC chemo, I went on a little trip with friends. 2020 was not the year I expected, but I have still been able to have fun. I encourage you to do the same.

 

For more about Kate, please visit her blog: https://www.mskatedecorates.com/cancering/2020/4/2/lessonsfromacancerpatientduringaglobalpandemic

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Written by: Kate Williams One of the things that cancer patients talk about when they get together is where they were when they “got the call.” The call that turned life upside down. The call bearing the worst health news you could imagine. Absolutely nothing prepares you to hear “you have cancer.” It is a… Read more.

Meet Lynn

Lynn B. had a feeling that something was wrong in December 2013. After talking with her doctor’s office about it, the doctor recommended a mammogram a couple months before her annual test was due. The mammogram showed something concerning and required a biopsy.  “I was pacing around my office, waiting for the doctor to call with the results of the biopsy,” Lynn noted. “They said it was Stage 1B breast cancer, and they immediately scheduled an appointment.”

It was a scary time for Lynn. “I’m usually very frantic and have had panic attacks in the past. I cried in the shower but tried to remain calm on the outside.” At her appointment, the doctor reassured her that they had found the cancer very early and he was confident he could get it all. Lynn felt much better after talking with the doctor. “My family was more scared than I was. But I told them not to pity me, just pray for me.  I think I was calmer than the others around me and I just kept repeating to myself, ‘I’ll be fine!’”

Lynn had a lumpectomy in February 2014, six rounds of chemotherapy and radiation. She continued to work; her boss’s wife helped a couple times a week to make sure the accounting department she worked in was not falling behind.

“I found out about Cancer Support Community Central Ohio at Riverside Radiology. Another patient told me and suggested that I check it out. I called and went to a welcome meeting, then to my first meeting of the breast cancer support group in September.”

Lynn is a regular participant at the meetings. “I look forward to it. The women in my group are inspiring and encouraging and truly my friends.  It’s comforting to be around people who have been through what I have, to hear them say that they’ve been through this and to hear their advice.  And it makes me feel good to be able to share what I’ve been through when a new person joins the group. I hope that can help others who are just starting out on the cancer journey.”

Although it has been more than five years since her surgery, Lynn says there is always that fear of recurrence. But she continues to have regular check-ups with her medical team, and she continues to attend the support group monthly meetings, where she gets hope and encouragement from others who have also been on the cancer journey.

“I appreciate all the services that Cancer Support Community provides, especially since there’s no cost for any of the programs. I would encourage anyone who has been diagnosed with cancer to come to the support group. It’s been a big help to me and I’m sure others would feel the same way.”

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Lynn B. had a feeling that something was wrong in December 2013. After talking with her doctor’s office about it, the doctor recommended a mammogram a couple months before her annual test was due. The mammogram showed something concerning and required a biopsy.  “I was pacing around my office, waiting for the doctor to call… Read more.

Being a Community

Written by: Angie Santangelo, Program Director at Cancer Support Community Central Ohio

Community (n):  1. a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals. 2. joint ownership or participation

As I hang up the phone, I am drawn to reflect on this holiday season. This call was good news, treatment is working, and the joy needed to be shared. Earlier today, the news of a new diagnosis hit and shook another family. Through the ups and downs I am so glad we share them as a community. Every day I see acts of community and kindness and my heart swells. Being a part of this community has been constant in my thoughts lately and I truly count being a part of the Cancer Support Community as a blessing in my life.

There are several versions of the definition of community. The above two are my favorite. I witness “joint ownership or participation” daily. Every time someone puts up or takes down a chair or moves a table or washes a dish. Coming early or staying late to spend a half hour or hour volunteering. Greeting the new person who walks in the door and making them feel welcome. These acts can be small but are so powerful, they show joint ownership, being a responsible party in the community. That special feeling that you feel when you walk through the doors is the energy that is created by community. We aren’t just offering programs that you attend, and then walk out the door. We are a community where you come together, learn together, grow together, grieve together and walk away feeling less alone and knowing you have place where you belong.

“A feeling of fellowship with others, as a result of sharing common attitudes, interests and goals.” We have come together because we each have been impacted by cancer in some way. Hearing those words, you have cancer, means your live changes forever: Whether the cancer has invaded your body or the body of someone you love. The fellowship in this community is so beautiful to me. Watching people care and support one another. Getting weekly updates on treatment, validating a new an beautiful bald head, placing a name in the box during Qigong, making an ornament and giving it to the person next to you, moving your yoga mat over to make room for someone, sharing the joys of clean scans, sharing the sorrows of loved ones lost – this is fellowship – this is community.

As I wish our community happy holidays this season, I am acutely aware, it is not always happy during the holidays. In the recent weeks I have celebrated with those who are now cancer free, who are seeing family coming home for the holidays, and who see treatment working. I have also been heartbroken by the loss of a child, a family pet, and our beloved chef. I’ve been angry with those who have received there second cancer diagnosis, a re-occurrence and failure of treatment. The joys and sorrows weave their way through our community. Together we laugh and together we cry. Each person’s moment being important and acknowledged.

The hands that keeps us productive, organized, and help get the word about who we are out belong to our volunteers. Those who give a half an hour or a whole day or make a weekly commitment help us reach more people and serve more people. The work we do is increased by the hands of our volunteers.

The glue and heart that holds our community together is our staff and facilitators, all who are here because they have a passion to serve. The day to day would not happen without their tireless effort. The passion shows through is every dollar raised, every flyer made, every email sent, every activity organized, every volunteer recruited, every class provided, every repair made, every roll of toilet paper changed!

The vision and momentum to keep moving forward comes from our board of directors. I stand in awe of these men and women who are community leaders. They are not just here filling a seat, they are invested in making a difference and do so with their dollars, time and talents. We are stronger, growing and mission focused because of their dedication.

Community – To quote my daddy, is “awesome.” Thank you for being a part of this community. As we walk through this holiday season together, join me in being part of the community. Give the gift of time and attention to your neighbor. Check in to see if this is a joyous time or a challenging time, be with them in the here and now. I believe the power of the Swedish proverb: Shared joy is a double joy; shared sorrow is half sorrow.

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Written by: Angie Santangelo, Program Director at Cancer Support Community Central Ohio Community (n):  1. a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals. 2. joint ownership or participation As I hang up the phone, I am drawn to reflect on this holiday season. This call was good… Read more.