Mesothelioma Doesn’t Have To Be a Death Sentence

I am long overdue for an update, but that will have to wait (just a little longer). I am posting today because I think this message needs to be heard. I tend to focus on my niche in lung cancer, but the truth is, its a big wide open field. For a very long time (think since the 80’s) the survival rate has remained pretty stagnant with few exceptions. So when one hears the word Mesothelioma, you can understand the fear it strikes on one’s heart. It was March 1998 when my family got the news my father was diagnosed with pleural mesothelioma and given months to live. To his credit, he survived 16 months. Since that time, and for a long time, treatments didn’t change and neither did the prognosis. Until now.  Screen Shot 2018-08-06 at 8.53.39 PM

On August 1st, it was Lung Cancer Awareness Day, I was supposed to post this then, but I held on to it deliberatly to make a point. Every day is Lung Cancer Awareness Day for me and my family, and for all those who have been touched by this terrible disease. So I post this today, because August 6th is Lung Cancer Awareness Day as is the 7th and 8th and so on.

The second reason I post this is because many people out there who have been diagnosed or have a family member who has been diagnosed may not realise that asbestos exposure at the work place is a work place hazard, and that often, there are class action Screen Shot 2018-08-06 at 8.56.14 PMsuits or government programs (although they don’t advertise!) to help support both the patients and their families. In Canada where I live, asbestos and its products are not
manufactured or in use, however, oftentimes exposure can come from old materials such as drywall, pipe fittings, or coatings. So if you are planning on a renovation, or work in construction, it is wise to be aware of potential exposure. Asbestos is stable until it is disturbed, so it is advised that you contact an inspector or a remidiation company prior to any demolition or work. I will post some links to information and contacts at the end of the post. Now that I have gotten that off my chest, I welcome you to read the following article: Mesothelioma doesn’t have to be a death sentance, by guest author Gregory A. Cade of the Environmental Litigation Group, P.C.

I have worked as an attorney who specializes in mesothelioma, asbestos and environmental law for over twenty years, and in this time my firm, Environmental Litigation Group, has helped more than two hundred thousand clients. I have spoken to many people and I have learned about their lives, experiences, fears, I became close to my clients and I have learned what most people think when they hear that they have mesothelioma.

First of all, it is important to define what mesothelioma actually is, as some readers might not have heard about it until now. Mesothelioma is a rare, very aggressive type of cancer that develops after asbestos fibers enter into a person’s body. This disease is extremely volatile, in the sense that it can metastasize extremely fast and it can take either a few months to a few decades for the cancer to develop, after being exposed to asbestos. There are 3 main organs where mesothelioma can develop: the lungs (pleural), the abdomen, liver, spleen and intestines (peritoneal) and the heart (pericardial). There are rare cases in which mesothelioma develops in other parts of the body, such as the testicles.Screen Shot 2018-08-06 at 8.57.49 PM

Throughout my career as an attorney, I have met many people diagnosed with pleural mesothelioma, the most common and aggressive form of this type of cancer. It is always heartbreaking to speak to them because you always feel and see the fear and hopelessness in their eyes. Many people would see a cancer diagnosis as equal to a death sentence. On top of that, because of its aggressiveness, since they are diagnosed mesothelioma, patients are usually expected to live between 6 and 18 months. This is why, most clients come broken and defeated, having already given up on the fight with the disease.

I believe that this is an incredibly wrong and dangerous mentality! To every person sick with this illness that comes through my door, I tell them to keep fighting, to never surrender. I personally know people who have lived over 10 years with mesothelioma. They do sports, go outside, eat at restaurants and they look great! Nobody would even think that they have cancer. As cliché as it may sound, I believe that cancer can be beaten and that nobody should ever give up hope.

In the last years, more and more treatments are becoming available to help cure cancer patients, or at least extend their lives. Chemotherapy and radiation therapy, although they yield results, are not the only options anymore. There are precise surgeries which remove damaged tissue, medical trials that can help people, there are blood transfusions to strengthen the immune system, there are pills which help fight the disease and keep it from spreading. All of these methods are worth trying as they can be the difference between life and death.

Screen Shot 2018-08-06 at 8.54.11 PMOf course, because mesothelioma, and cancer in general, are such aggressive diseases, patients adopt a fatalistic approach towards life. I want to urge people who may find themselves in this unfortunate situation to keep pushing forward! There are so many wonderful things to explore and if you are given a chance to do them, why not take it? Indeed, there are odds that the cancer will still progress, but even so, remain hopeful! Some clients who combined exercising with healthy eating and regular treatment have survived for more than 5 years, some even more that 10! They have watched their children grow, have remained with their loved ones, have explored the country and they have grown as a person. So I must emphasize once more, keep on fighting, hoping and taking care of yourself because cancer doesn’t have to be a death sentence.

Asbestos Information:Screen Shot 2018-08-06 at 8.55.41 PM

In Canada:

USA:

International:

Spanish

A very special thanks to Gregory A. Cade of the Environmental Litigation Group, P.C.    2160 Highland Avenue Birmingham, Alabama 35205  (760) 696-7959

Be well,

AM

Happy Valentine’s Day

Screen Shot 2018-02-14 at 6.00.08 PMIts Valentine’s Day (and Ash Wednesday – irony?!), I had planned to write about some of
the struggles of dating and cancer, but I am sick with the flu and my fever addled brain isn’t functioning as diligently as I’d like. So to avoid me writing nonsense, I will repost what I wrote last year and save that topic for my next post. If there are any specific questions you might have regarding dating and cancer, please send them to me and I will do my best to address them in the post. Until then, whether you are spending the day with your valentine or going solo, know that you are loved.

Be well xo

AM

On this St. Valentine’s Day, I thought I’d share with you the story of how my husband and I met.

Now before I get to the meat and potatoes of the story, I must give you a little backgrounder. Before I got diagnosed with cancer, I didn’t date. Especially online dating. Like many, I had my reasons, but mainly, it was because I was so fracking busy I had no time to socialize with my friends, never mind strangers. So at that time, I figured, if something came around, it came around. My focus was my career. Of course, when I got sick, the main focus was on that, and getting better. So again, dating, not high on the priority list.

When I got sick again, I thought I was a goner. I figured it was time to get out there. I mean if I was going to die, I may as well have a little fun before kicking it. I decided to put my profile up on a few dating sites. I relegated myself to knowing I’d likely meet a few wackadoodles, because such is life. If that happened, I’d just politely thank and excuse myself and quickly extricate myself from the situation, pick up the tab and be gone, thank you very much. After all I have terminal lung cancer, I don’t have time to waste!

So here comes the good stuff.

I winked at Patrick and he winked back at me, at least that was how it was done on that particular site. I know cheesy!

Shortly after the wink, he sent me a message kindly asking if I would like his number. I of course said yes. I anticipated a call from him, but a week went by, then two, so I figured he had lost interest and didn’t think on it too much. Ok fail numero uno. No problem.

Then out of the blue, about a month later, I get a phone call and its Patrick. I almost didn’t answer because I was waiting to go into an appointment when he called, but he was so apologetic, I couldn’t resist. He said he had been thinking about calling all month, but he had been so swamped at work that he could never find the right time. He called because he had a few days off for Thanksgiving and his birthday and wanted to meet me. I offered to take him for coffee for his birthday. It was arranged that we’d meet at the Dark Horse Espresso Bar at 4 on his birthday.

 

 

As left my house to meet him, I   remember thinking “wouldn’t it be funny if we ended up on the same streetcar?!” It would since I was coming from the west end of the city and he was coming from the east. So when I approached the streetcars at Spadina Station, I texted him to let him know I was on my way. He replied, so am I. There was such a crowd waiting to get on streetcars that day, I decided to wait for the crowd to die down and I got on the next one. I got on and went to stand where I usually stand at the back of the car in front of the back doors.

Even though I had waited, it was still jam-packed. After the streetcar passed College, a bunch of people got off and there was some space. So I texted him again saying, “I just passed College, I’ll see you at Dark Horse.” He replied with “me too.” When I looked up from my phone I spotted a guy that met the description Patrick had given me. I chuckled to myself because he was literally 5 feet in front of me.

Upon my realization, I texted “Are you wearing a grey hat?”

“Yes?”

“I think you are on my streetcar.”

At which time he had moved directly in front of me, but had his back turned. I watched as he looked about the streetcar trying to find me. Just before our stop, I tapped him on the shoulder. He turned, looked at me and said “You’re short.” (Oh God…here we go) “I’m sorry, I just mean usually girls I’ve met are taller than me. You’re awesome!” (Ok, you get one…and you recovered well).

At Dark Horse the conversation came fast and easy. He made me laugh, I felt like we knew each other already. We talked so much, we shut down the shop. At this point, I didn’t want the date to end, so I said “hey, are you hungry, I am, we should grab a bite.”

“Yeah! Absolutely.” So we walked a short distance on Queen St. and stopped in at little bistro. Again, the conversation came easy and we ate and talked and ate and talked until it was time for them to close.

We had met at 4 that afternoon and now it was 11:30, but time flew by so fast! He walked me to the subway, but before we said our good byes he says, “My room mate is throwing me a birthday party. Do you want to come?” As much I really didn’t want to say good night, but I was going to Ottawa the next day for a conference and really did need to get home. The funny thing was, he should have been at that party way earlier on that evening. I guess he didn’t want the date to end either. We parted ways and I was of to Ottawa.

The next day sent me a text me to say what a good time he had and we chatted away the screen-shot-2017-02-11-at-12-34-23-pmwhole weekend and agreed to see each other again. When I got off the train three days later, he met me with snacks, because he knew I had been on a train for 5 hours and I might be hungry (Swoon). He then said he had dinner awaiting me.

As I wandered his apartment, I noticed the pictures he had of family, it was really nice. I knew that I liked him, I also knew I had a huge monkey on my back! I had been tormented all weekend and all though our date. I felt so deceptive by keeping my cancerous life from him. Did I wait to tell him, or do I break the news now so he’s not invested. From all I have seen, I need to do it sooner than later. He is too nice to get hurt.

After dinner, as we sat on the couch, I knew it was my opportunity (well it was nice meeting you), I took a deep breath and said, “I have something to tell you.”

“Oh, is everything alright?”

“Yes. But. Ok, how do I….It’s nothing that has to do with you, it actually me. I’m…I’m not an alien, but I am a mutant.”

“I’m sorry, what?”

“I’m a mutant, I have ALK rearranged stage 4 lung cancer. So I’d understand if you don’t want to see me again.” He took my hand and looked at me and said “My friend’s wife has cancer too, I think you guys would make great friends. I really like you, I’m not going anywhere.”

That’s how he stole my heart.screen-shot-2017-02-11-at-12-37-30-pmscreen-shot-2017-02-11-at-12-31-55-pm

#GivingTuesday

Screen Shot 2017-11-28 at 9.25.44 PMAbout a year ago, I wrote about Awareness and Action, That they are vastly different things. One is the actual act of something, the other is passive, and involves doing nothing. That’s right, nada, Zilch. Zero things are done. Bupkis. So in the dying hours of this Giving Tuesday, I want to remind people of just that. We should act and give, not just today, because we have been sold on a “gimmick”, but because we want to. Often even every day. It can be big or small. It also doesn’t have to be money, it can be time or a good deed. We have gotten too used to throwing awareness around, that nothing really happens. Lots and lots of inaction.

So why do we need a reminder?! Goodness and giving should be a no brainer, right?!

Is it that we get so wrapped up in our own drama, that we don’t see, or make time? AreScreen Shot 2017-11-28 at 9.26.08 PM we keeping score? If we are, then we shouldn’t, because life owes us nothing.

So I’m reminding you, Awareness is great, be aware, but also act.

I’m leaving this here, because I have to.

Be kind. Be good. Be present. Be generous. Give. Be well.

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Organizations I love.

Lung Cancer Canada

Young Adult Cancer Canada

First Descents

Save Me Dog Rescue

Konichi wa Nihon

So today is the big day, day one of the IASLCs World Lung Cancer conference! After a few days getting our feet grounded after so so much travel, I’m ready to report! 

So far it’s a busy day (what an understatement). I type this as I wait for my second big session. I’ll be back later with a summary of my day, and a few highlights of the conference’s first day. Until then, you can keep posted by following on Twitter (@thesearemyscars, @iaslc, #WCLC2017, or #LCSM, or Facebook). 

Sorry I can’t live link, but I will later on. Blogging by phone has its limitations! 

Sayonara for now, 

AM

Look out Yokohama

Screen Shot 2017-08-22 at 4.14.12 PMIt has been a little while since I have posted and much has happened since the last post. One of the most notable things is, I was selected and awarded the IASLC’s Patient Advocacy Travel Award. This award allows me to travel to Yokohama, Japan for their annual World Conference on Lung Cancer. JAPAN!!! I cannot tell you how excited I am. For one, I get to travel to a country that I have always wanted to visit. I get to soak up the latest information on lung cancer research and practice. I get to network with other patients, advocates and experts in the field of lung cancer research, and I get to go to Japan. Have I mentioned I’m going to Japan!?Screen Shot 2017-08-22 at 4.05.37 PM

Seriously though, I want to take this opportunity to share what the IASLC does and let everyone know about their Foundation Cancer Care Team Award.

The International Association for the Study of Lung Cancer (IASLC) is the only global organization dedicated to the study of lung cancer. Founded in 1974, the association’s membership includes more than 6,500 lung cancer specialists in over 100 countries. IASLC members work to enhance the understanding of lung cancer among scientists, members of the medical community and the public. IASLC publishes the Journal of Thoracic Oncology, a valuable resource for medical specialists and scientists who focus on the detection, prevention, diagnosis and treatment of lung cancer.* For their mission statement, more information and resources, please go to their website.

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Nominate Your Care Team Now!

The IASLC is excited to announce the creation of a new award, the IASLC Foundation Cancer Care Team Award, designed to recognize outstanding patient care and honor multidisciplinary teams working together to provide the highest quality cancer care.

Nominations will be accepted from all over the world. The winning team will select one representative to attend the IASLC 18th World Conference on Lung Cancer, for which IASLC will provide monetary travel support. Learn more and nominate a team for the award. Please contact them with any questions: membership@iaslc.org.

As always, be well.

XO AM

*taken from https://www.iaslc.org/about-us

World Lung Cancer Day

Screen Shot 2017-07-31 at 9.39.03 PM

Screen Shot 2017-08-01 at 12.55.01 AM
The Forum of International Respiratory Societies

Honour, Unite, Inspire. It’s 12:01, the dawn of the 6th World Lung Cancer Day and I struggled trying to write this. I wondered if I should write about numbers and facts, or maybe about how lung cancer is the most common cancer globally*. That of the  estimated 1.8 million new cases (in 2012)*, most (58%) occur in less developed countries*. That it is the most fatal cancer globally*. However, it might be more meaningful to tell you what “Honor, Unite, Inspire”, means for me, a lung cancer patient.

Screen Shot 2017-08-01 at 12.55.19 AM
Pan-African Thoracic Society

I write and share about living with lung cancer is because, I truly feel that if my experience, struggles and joys can touch or inspire just one person, then I have done my job as a good human. I think back to when I was diagnosed, and throughout treatment, I felt so very alone. I think of all the people out there with that same diagnosis, and how they too must have felt isolation and loneliness. I think about all the questions and fears I had, and no one to advise me, or let me know that what I was feeling was normal. I needed blogs like this, connection to patients who have survived and were surviving. Back then, it was hard to find. Now, not so much. Thankfully, but we still have work to do. Its for this, we have a Day like today.

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American Thoracic Society

Everyday I am blessed to see, I get to honour those who have given me strength, those who live with this disease, and those I have lost to it (sadly there are so many). Their courage and grace, push me to be better and instil me with passion to advocate for others living with this disease. It helps me channel anger in to action, frustration into hope. One of the reasons I advocate is so that those who are newly diagnosed don’t have to. So that they won’t fall into the cracks, and so that they don’t have to face the stigma of their diagnosis. There it is, the “S-word”, that assumption that lung cancer is our fault. That deadly misconception, that impedes compassion and funding. That idea that adds unnecessary stress

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European Respiratory Society

and shame on a patient and their family. It is for this, we need a Day like today.

It has been over 8 years since my original diagnosis, I know that I am alive in part to where I live. I am very lucky to live in a country that has a health care system that is accessible to all of its residents. I know it isn’t perfect, we have problems too, but its still pretty damn good.

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American College of Chest Physicians

Therefore, it would behove me if I didn’t point out the disparity between first world nations and developing nations. We are often so focused on our own problems, that we forget to think of those of others. Here, we might concern ourselves with accessing the latest and greatest treatments, there they may worry they will get treatment at all. Many countries don’t have the infrastructure and provide basic care, people may not  get

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Asian Pacific Society of Respirology

a proper diagnosis, let alone treatment that costs thousands of dollars a month. Their governments like ours focus PSAs on smoking cessation, the difference it that is their man way to “treat” lung cancer, after all you don’t have to treat the patients you don’t have. Here we concern ourselves with late effects or secondary cancers, there patients may worry they and their family will be shunned by their community, because there they think cancer is contagious. It is for this, we need a Day like today.

Until, we can ensure patients everywhere are being screened or

Screen Shot 2017-08-01 at 12.56.45 AM
Asociacion Latinoamericana De Torax

diagnosed quickly and comprehensively, are receiving the appropriate standard of care and support, are receiving as much funding as every other common cancer group, and we have either increased the survival rate to above 50%, or reduced the number of new diagnoses, we will need a Day like this.

AM

*Source WLCD Fact Sheet.pdf, http://www.firsnet.org/news-and-actions/86-forum-of-international-respiratory-societies-continues-grassroots-world-lung-cancer-efforts 

 

 

Mother’s Day and Coming Full Circle

Screen Shot 2017-05-14 at 9.58.24 PMIt’s Mother’s Day today and I have to admit that it can be a bit of a challenging day for me. As progressive as I am and know that one is not defined solely on one aspect of their life, not being a mother is well a mother. After all it’s a day explicitly for celebrating our mother’s, but what is a mother?Screen Shot 2017-05-14 at 9.04.55 PM

Babies are popping up everywhere, and kids are extra cute at least it seems so especially today. There is nothing like other people’s joy serving as painful reminder of the things you cannot have. Please don’t get me wrong, I am overjoyed for their happiness and the blessing of that new life, but it’s just that it’s an in your face reminder that I will never be a “mother” and some days it just feels like cancer just robs you of everything.

Screen Shot 2017-05-14 at 9.02.09 PMFor a while I thought that this sense of loss was more about feeling what it is like to be pregnant than actually being a mother, but I now know that it is the whole cycle of life that I am missing out on.

Early on in my diagnosis, I had the wherewithal to ask about fertility preservation. I was referred to an onco-fertility specialist literally days before my first treatment. I remember vividly sitting in the Dr.’s office, thinking I had everything under control until “harvesting, embryos, and sperm donors” were mentioned. I actually started having a panic attack. My head swam with questions, “What if I meet someone and they don’t want my sperm donor embryos,” “What kind of qualities do I look for in a donor”, “What do I do with my embryos if I don’t use them?” “I can’t donate them, pieces of me will be out there, but I don’t know if I can destroy them,” the thoughts were consuming.

Breathe, just breathe I thought.

My saving grace was my oncologist deciding that there just wasn’t time to delay three weeks to harvest my eggs. So they shut my reproductive system down while I did chemo. It seems strange to have such a monumental decision made for me, but it was a relief that I didn’t have to decide, I realize now, I wasn’t ready and as much as I wanted to consider the options, the truth was, there wasn’t time and I didn’t have anyone to turn to for unbiased advice.

After treatment was finished, I saw the fertility specialist again to revisit whether I wanted to harvest and preserve my eggs. At that time, I decided that I would harvest eggs, but I didn’t have the finances to proceed and although I would be getting the cancer discount of 50% off the regular price, I waited.

Once again, the decision was made for me, my cancer was back, this time it had spread and I realized that I might not get out of this alive. Parenthood would have to be something that was sacrificed in order to save my own life. Even though it’s now eight years later and I am stable and married, my choices are still limited to acceptance of my infertility, except now I am actively trying to prevent pregnancy.

Screen Shot 2017-05-14 at 9.18.26 PMIt is amazing how things can come full circle. Having the option of being a mother taken away from me made me want it so much more, but having been through treatment and knowing I will live the rest of my life with cancer and the possibility of recurrence or progression at anytime I am steadfast in deciding not to have a child. I mean, how can I possibly put a child through losing their mother, or risk passing on my faulty genes or risk my own life just trying? Had I never encountered cancer, I wouldn’t have a problem trying to get pregnant at 39, but that is not the case.

Even if I could get pregnant, my ovaries have been exposed to so much radiation from scans and treatment my eggs would be fried, they have been exposed to systemic chemotherapy, and they are 39 years old, the odds of having a healthy pregnancy is not be in my favour.  As it stands, the treatment I’m on counter-indicates pregnancy. The drug inhibits a protein (ironically ALK) that is used during fetal development and the effects on a growing fetus are unknown but likely detrimental. I could stop treatment, but that would mean I’d have to stop my meds for as long as it takes to clear out of my Screen Shot 2017-05-14 at 8.58.18 PMsystem, plus the time it would take to get pregnant and finally another nine months until delivery. I might be lucky enough have the cancer not grow or grow slowly enough to make it to delivery and restart treatment, but then there are no guarantees that I’d respond to treatment again. It would be playing Russian roulette.

 Maybe it is a selfish decision, maybe it is for the best, but there is nothing like holding and smelling a new baby to make you doubt your decisions. I don’t know what it is about the new baby smell that triggers every cell in my biology to want a baby, but it does and it’s hard to resist that siren’s call. For a long time, I couldn’t bring myself to attend baby showers or even hold a newborn because it was so upsetting, but I have gotten better. Knowing something in your brain doesn’t make it any easier to knowing it in your heart. I don’t regret any of my decisions and it has taken a long time to get to a place of acceptance. I still have my bad days, today is one of them.

Screen Shot 2017-05-14 at 10.07.25 PMI am very lucky though, I am healthy and happy and have a wonderful little family (Me, my Patrick and all the fur babies, Lacey, Finn, Mischa and Borat), and have been blessed with a most incredible mother who raised and cared for me (still does) in good times and in bad and taught me how to be a strong woman. I have a wonderful mother-in-law who is kind and thoughtful and who so openly embraced me as a daughter and know through her son what an amazing mom she is. I have so many women in my life who inspire me to be great and to do great thing because of their example of sacrifice and grace. So I don’t have my own biological children and never will, but I have known the kind of Screen Shot 2017-05-14 at 8.56.55 PMlove it takes to be a mother.

To all the would be moms and mothers who have lost children, adoptive moms, and surrogate moms you deserve to be celebrated today too. So to all the mother’s out there in whatever way you are defined, Happy Mother’s day to you.

AM