Verification as per mod: This post has been verified as true by the moderators http://www.reddit.com/r/IAmA/comments/v73pd/iama_39_year_old_who_was_a_medical_volunteer_at/c521uuu [–]Drunken_Economist[M] 1 point 4 minutes ago OP has confirmed this thread with the mods.

I was in perfect health in 2001. In the years since 9/11, I have had serious medical events occur. Now, at age 39, I have cancer. Cancer rates are alarmingly high in people who worked or lived around Ground Zero in the days and months following the terrorist attacks. I am the first person in my entire family history to have cancer. I am scared. I am the main earner for my family. I write about my experience with cancer and medicine in general www.ERtopics.com. Despite everything I have experienced, I would help again were a similar disaster to occur again.

To Answer some common questions 1) Motivation to Go & Details I was working in an ER near the New York state border when the attacks occurred. I followed the story as it unfolded through out my shift. With each passing hour, I became more intent on going to help. What sealed it for me was a news anchor from one of the New York channels pleading for people with medical skills to go to St. Vincent's medical center to help. So, after getting a small group of emergency workers and a bunch of supplies, we drove 16 hours to get to St. Vincent's. From there we were shuttled to Stuyvesant High School. My heart felt broken after witnessing the attacks. I felt so disappointed in the human race. However, seeing the resolve of New Yorkers and how they came together to rise above the attacks was one of the most profound experiences in my life. It was such an honor to work alongside so many great citizens all working towards a common goal. Although I was far from home, I felt that I was in the exact place I needed to be at in that moment.

Update June 19th - I start back at work for one shift today after being off for several weeks. I am excited to be getting back to my normal routine. I don't feel 100% yet but I think the time is right. I will continue to reply to comments I have not yet gotten to later and tomorrow.

Comments: 1439 • Responses: 39  • Date: 

MikeFSU1062 karma

I just wanted to thank you for everything you did at Ground Zero. You will always be a hero in my eyes

SpiffNarley805 karma

Thank you so very much. I love my American neighbours. I felt it was my duty as an emergency worker, as a Canadian, and as a human being, to help. I don't doubt Americans would do the same were there a disaster in Canada.

biophile6480 karma

Thank you from me as well, if that even serves.

I am moreover brimming with potential dialog though. IAMA 40ish yo former cancer biologist who was also trapped at Ground Zero. We were doing a bioinformatics software startup off Williams three blocks away on the other side of the Fed. I was the last train under, then standing under the south tower 6 minutes before it crushed down, looking up at the hulking wreckage, then rerouted on foot to work off Wall and Pine, and was trapped in my building for a half day, eventually crawling out of there with a wet paper towel mask, to get myself up towards St Vincent where it was safer.

Now. The buildings were completely pulverized. I was staggered that the debris was only twenty feet tall. We can assume that we both breathed the same stuff afterwards: silica, concrete, insulation, ground up plumbing, paint titanium, cellulose, metals, fire retardant...even (shudder, but I think) persons. It was all pulverized; vaporized into the everything in the atmosphere. We carry them in us, health and poison. Our lives are living sacrament to those whom we worked along side and served.

Therefore I must ask, partly even for my own illumination:

Did you cough up anything colored? How long did you spend there, in hours? What was the particle size of your mask, just paper? Were you taking multivitamins at the time? Tested for lead afterwards? Long term chronic fatigue? Do you feel planes fly too low now? Sleep well looking at skylines in the distance?

You need not answer any or all of this. It is all horribly grotesque. It was cultural war. To me the experience is unspeakable, but this is your forum and so we fight together. I welcome anything you would share, public or private. I have not reached out to anyone else with the similar experience, and simply left the area to live elsewhere. Bless you.

SpiffNarley251 karma

Thank you for sharing your story. I was coughing up sut tinged sputum for a number of weeks after. I had an N95 mask - which was all that was available for volunteers at the time I was there. I was taking multivits at the time. I don't think I was tested for lead afterwards. I had a number of the PTSD symptoms you refer to in your questions and it took a number of years and counselling to get past my PTSD. I had a very hard time with the fact that a number of people survived the collapse of the towers but were trapped and could never be rescued. That was one of the hardest memories I dealt with.

17_irons44 karma

You are a brave and wonderful person. I hope that you and the OP will be able to speak, one way or another. Thank you so much for posting.

SpiffNarley53 karma

Sorry, what is the OP?

sev3ndaytheory11 karma

Original Poster

Just means the person who started the thread(you)

SpiffNarley12 karma

Thanks! I am new to reddit.

biophile617 karma

Thank you for that. Yet, my view of the destruction was compromised. It is urban and we were only sixteen stories high. So, getting in, being trapped, makes me nothing compared to the op, even though i didnt know all of what was happening since there was then a media blackout to me. She was selfless and heroic. I was only a victim.

17_irons42 karma

I haven't walked in shoes close to yours, but I can tell you that after 8 years as a firefighter (nowhere close to New York), I have been on countless calls where people who, to this day probably consider themselves "only a victim" are massively heroic and don't even realize it. I have every idea that your actions or reactions, your calming words or your kindness, your anger or your fear or your adrenaline or your hugs or tears, that you helped someone that day. Maybe it was a hundred people, maybe it was one. Maybe it was immediately life saving and you know, maybe it was words of comfort that stuck with someone there with you till later on, just enough for them to hold on later, and you'll never know.... The fact that you are able to come forward now and share with others like the OP and the rest of us is exemplary of your courage. Your questions here and your background make me think that you have helped or will help make the world a better place because of what you have seen and will make of it in some way.

In my experiences, people who survive such traumatic circumstances often carry guilt (illogical but inevitable) that is real, OK, and best delt with by speaking or writing to others about it. If this is your first time, don't be afraid to keep going. People who are trained to help are great. Talking to others who have shared your experiences (even in an informal environment) can also be very helpful.

SpiffNarley7 karma

Thank you for all that you do having devoted your life to helping others. I really enjoyed your comment. I have no shame in admitting that I had PTSD after my experience at Ground Zero. It took some time to get to a place of comfort around asking for help. Once I got help and spoke to soldiers going through similar issues having completed a tour of duty, I started to get my life back. Writing on this website this afternoon has been therapeutic as well. I really hope people never forget the many volunteers like me who are now also sick.

MilesColtrane60 karma

You are an awesome person. Thank you for helping in our time of need.

SpiffNarley45 karma

Thank you for your kind thoughts. I don't doubt AMericans would help us up north were there a need.

TypicalWhitePerson499 karma

The 9-11 victim compensation fund recently added 50 types of cancer to their list. Breast is one of them. Even with you being International, you are still entitled to some help from the fund. I would encourage you looking into that.

http://www.vcf.gov/

SpiffNarley620 karma

Thank you for the information. I read the article this past week. I don't know how I feel asking for money from the fund. I chose to help - no one forced me to go. I worry about the many Americans without health insurance who are now ill as a result of their being at or near Ground Zero. Thankfully I have medical coverage. I would rather the fund go to helping those who are going bankrupt trying to get well.

Dinaks32 karma

I don't even know what to say...you're amazing and I wish you all the best

SpiffNarley28 karma

Thank you. That is high praise in deed.

quest47484748212 karma

Terminal cancer where you write a bucket list and will or treatable cancer where the cures make you sick and your hair falls out?

Did anyone at Ground Zero wear a respirator while working and get cancer?

What's your prognosis?

Are you considering a trip to Canada to try something not available in the U.S. that has worked for other people with cancer?

Are you currently insured and if not are you uninsurable now because of a preexisting condition?

Do you have cancer in your dreams?

Are you in pain daily and are some days better than others?

Are you taking any drugs?

Among your family and friends who took the news the best and who took it the worst?

Did you see building 7 fall and do you think explosions went off inside?

What are your opinions about former Mayor Guliani and his current line of work making money off of other people's fear?

If you get nausea will you start smoking pot?

How scared are you on a scale from 1-10 (ten being Exorcist projectile vomiting and head turn scared)?

What kind of money are you earning (yearly) and how much longer will you be able to work?

Have you ever gotten so many questions from one person? Thanks in advance for answering mine (I'll check back in a few minutes to see if you answered any).

SpiffNarley313 karma

  • Treatable (I hope) breast cancer. Going through chemo now, no more hair, feel sick all the time but determined to win.
  • There were no masks/respirators available in the immediate hours after the attacks. I wore a flimsy one that got clogged with smoke and sut pretty quickly. Most volunteers in the immediate aftermath and during that first week did not have protective equipment.
  • I am Canadian and live and am being treated in Canada.
  • I became uninsurable the year after 9/11 after being in perfect health (I was a triathlete).
  • Interesting question: no, I don't recall dreaming that I have cancer.
  • I am in pain every moment of the day. I am pretty good at handling pain though. When it gets to be too much, I take medication for it.
  • I take medication, no drugs.
  • My mom took it the best, she is a very positive person. My spouse took it the worse. I totally get that. I would be shattered were she to get a similar diagnosis.
  • I did not see building 7 fall.
  • I am not a fan of the Mayor. I think the NYFD's union articulate the reasons why well.
  • I luckily have been able to handle the nausea with "traditional" meds. I would not be opposed to "pot" but would probably not like feeling "stoned" all the time. I have a great life that I want to be conscious for.
  • I am 8/10 scared. I am terrified about the cancer coming back. I have seen it happen to so many women with breast cancer.
  • I have had to keep working to pay the bills, only taking 2 weeks off in between treatments. I hope to work as long as I can and don't want to think about not being able to. I just want to get through this last round of chemo (which has been the hardest). I have a huge student loan to pay off. That stresses me out.
  • I hope I answered your questions well enough. Thank you for taking the time to write to me. Let me know if you need me to elaborate on any.

something_facetious84 karma

You should check out this book. The guy who wrote it lost his cancer battle, but he lived wayyyy longer than he was supposed to and wasn't sick the whole time.

This book helped me when I got my diagnosis and has helped my aunt through hers. It might help you to not be scared because you will feel better by being more active in your fight. I am now cancer-free and my aunt had surgery a few months ago and has had clear scans thus far.

I wish you the best. Take care of yourself and good luck!!

SpiffNarley60 karma

Thank you very much. I will check it out. Congratulations on winning the war against cancer! I hope to be in that club too.

brubaker3 karma

You should also consider to check Run from the Cure from Rick Simpson - Check his amazing story at phoenixtears.ca! Good luck!

SpiffNarley5 karma

Thanks again! Yes I am female.

[deleted]35 karma

[deleted]

SpiffNarley32 karma

I am sorry to hear about your mother. Thankfully I learned about antihistamines from my support group. They make a huge difference in decreasing side effects for me. Thanks for the suggestion just the same.

hanumanCT19 karma

Call me ignorant, but how are you uninsurable in Canada?

SpiffNarley5 karma

I have health insurance which covers 90% of my health care. What I don't have is disability insurance. I started having lung issues in the months after 9/11, including blood clots in my lungs. No insurance company accepted my application. Therefore, the time I have been off for cancer is not paid. I have no disability insurance. I wish I did.

Fuzzykins11 karma

I know it doesn't mean a lot, that there's a lot of stories, but my aunt had breast cancer, and it didn't look very good for her. She did very well in Chemo and never lost her smile, and she's absolutely fine now. She's been cancer free for so long. Don't lose your smile. :)

SpiffNarley14 karma

Thank you so much for telling me about your aunt. I love happy outcome stories! Congratulations to your aunt!!

[deleted]9 karma

[deleted]

SpiffNarley3 karma

Bless you too. I hope your heart mends too. Losing a parent is hard - I know as I lost my dad 2 years ago. Thank you for your encouragement as it means so much.

Atheist1013 karma

How expensive is the treatment in Canada?

SpiffNarley3 karma

I pay about $1000 a month in medication. The rest is covered by the province.

[deleted]2 karma

If you are near toronto you should look into this: http://www.medicorcancer.com/dca-therapy.html

SpiffNarley3 karma

Thank you I will look into it. I don't live near Toronto any more but I can ask my oncologist about DCA.

TheStoryGoesOn164 karma

Being the internet, I'd like proof, or at least sent to the mods.

What compelled you to volunteer? If your a Canadian, did you come down from Canada?

What days were you down at Ground Zero?

Have you been back as of late?

SpiffNarley24 karma

I have sent proof to the mods. I came from Canada to help leaving September 11th. I went back for the 1 year anniversary and again in 2004. I haven't been back since.

monkeytorture8 karma

These are the questions I came to ask. Would love to hear your story and how you ended up there to help. I tell myself I would've been first to help if I were in NYC at the time but there's obviously no way of knowing if I'm fooling myself. Would really like to hear OP's thought process and what motivated her to go.

OP - your bravery (in 2001 and now) is commendable. You are a hero.

SpiffNarley6 karma

I added the answer to your question to my OP. Hope that explains it.

ILiveInNYC103 karma

Lost a family friend on 9/11. My dad being in the fire department knew a lot of people. He now has a nonstop cough because of something in his lungs. (presumably from ground zero). My friends dad is sick from being on the stack for weeks. He isn't expected to make it to next year.

No question for you but thanks for what you did.

SpiffNarley74 karma

I am sorry to hear about your loss, your dad's and friend's dad illness. The long term impact of the attacks have been horrible for so many. I wish there was a cure or a remedy.

sanjeevmishra94100 karma

What did you think of Jon Stewart's crusade to promote your cause?

SpiffNarley161 karma

I wasn't aware of it. I live in Canada so perhaps that is why I have not heard about it. Good for him. There are hundreds of us. I am lucky that I live in Canada and have free healthcare. I find it difficult to think of how grateful people were during the days and weeks after the attacks, and how people with power to change things have now all but forgotten us. That isn't fair.

ZineZ135 karma

the fact that you did this without even being an American makes you even more of a fucking hero. You must update when you get cancer free :)

SpiffNarley129 karma

Thank you for your kind words. I will absolutely update reddit when I beat this beast - and I will!

PulvisEtUmbraSumus98 karma

My dad died in tower 2. I've always been frustrated with the way that news media and politicians have turned what happened that day into an excuse for an increasingly aggressive foreign policy. How do our entanglements in the middle east feel from your end?

SpiffNarley65 karma

I totally agree with you. I was shattered when I realized that the events on 9/11 were going to start wars in the middle east. I wasn't a fan of the resulting foreign policy either. I am sorry for the loss of your dad. That couldn't have been easy.

5everalone20 karma

If, someday, we bump into each other, id like to ask forgiveness in person for your loss - a pakistani

SpiffNarley2 karma

This wasn't your fault at all. I know this will sound odd, but initially I felt guilty for being a "human being" because it was humans who did this. One of the reasons I felt compelled to go to help was to show myself and meet others that not all humans are monsters that plan and execute such horrible acts. I would be sad if you carried guilt being from Pakistan. Just live your life doing good in the world. That is all anyone can ask of us. Take care.

Frajer33 karma

Can you prove that being at ground zero gave you breast cancer?

SpiffNarley46 karma

It's tough to prove. I had no risk factors for breast cancer. No one in my entire family history (or going back 70 odd years) has ever had cancer. So it is unusual that I would get an aggressive cancer at a relatively young age. The New York Times recently published an article outlining certain cancers that have been linked to working at Ground Zero - Breast cancer was one of them.

JohnAdamIan20 karma

I happen to be reading this article today, sort of a coincidence.

SpiffNarley25 karma

It is a frightening article. There are so many former volunteers that - like myself - have developed cancers at younger than the "normal age" for certain cancers. For example, multiple myeloma. I feel lucky that my cancer was detected early. I can only hope for the same for others who volunteered.

limprichard16 karma

My wife volunteered for the Red Cross down by the WTC in the weeks after 9/11. This past December, at age 41, she was diagnosed with adenocarcinoma. It's a lung cancer that can develop in non-smokers and smokers alike, although my lady smoked for 20 years, so it's anyone's guess as to whether it was her smoking history, the air at WTC, or some combination of both. However, we found it telling that her surgeon was stunned; he never sees it in anyone that isn't in their sixties.

My wife is fortunate to have a regular oncologist and an integrative care oncologist, who (if you don't know) does amazing work blending Eastern and Western treatments of cancer. In our first meeting he knew exactly where the cancer came from. We, too, were lucky: though it was stage 3A, it was a very localized primary lung cancer; they felt confident they got it out with the surgery, but then they threw serious-ass chemo at it, and we're in week two of radiation now. So there's one more success story (for now).

I'm glad you're doing better, and I wish you and your family all the strength and support I can telepathically impart.

SpiffNarley7 karma

Thank you so much for sharing about your wife. You are both cancer warriors. Like you and your wife, I cannot be certain that helping at Ground Zero caused my cancer. However, like your wife, my cancer attacked me at a relatively young age making it atypical. Bless your wife for helping. I was humbled by the outpouring of support and bravery New Yorkers showed the world during that terrible time. I met some incredible people while helping.

allyfizzle20 karma

my mom is a respiratory therapist & as we watched the events unfold one of the first things she said was how all the emergency response teams & clean up workers were all going to have serious medical issues & how they needed to be cared for & how she could & would help. she named nearly every medical problem all that dust & debris has caused as we watched the towers fall. i could only grasp the momentary horrors & thought of all the people inside & around the towers. my mom was affected on another level, she saw the tragic long term effects the instant those towers were hit.

As someone who volunteered at ground zero did you take the statements made by Christine Todd Whitman (EPA) to be truthful at the time? If so, how did you feel once it was uncovered that those statements were false?

As a New Yorker I sincerely thank you! I will never forget the stench and melancholy of the city in the days and even months following. I can't imagine the things you witnessed and all that you are dealing with now. If you ever need anything don't hesitate to ask. Our great city owes you a great deal and I hope you are getting all the benefits you deserve.

SpiffNarley12 karma

I had heard those statements and knew the government was wrong. The air was so rancid. I don't know that the cover up made a difference to me as it did not change much for me. However, I was bothered by the impact her lies may have had on other volunteers. And, thank you for your kind remarks. Being Canadian, I don't get any benefits for volunteering or for getting sick. I never expected to get anything.

KingKidd17 karma

What kind of cancer and have you consulted with attorneys?

SpiffNarley87 karma

I have breast cancer (am a woman). I have no interest in consulting with attorneys. I feel that I went to help on my own volition. No one forced me to go. So, how could I turn around and sue anyone? I also live in Canada where health care is provided for. Having said that, I understand why others who went to help are suing. I cannot see myself doing that.

stopnfall12 karma

I was a volunteer in the frozen zone and stayed down there for a month or so after 9/11. Since there was no organization to speak of, especially in the early days, I freelanced - day one I spent in the medical triage area on Greenwich, later I worked with the Red Cross, and then started an aid station at Church and Dey.

My main focus became acquiring and distributing respirators. To this day I look back with frustration at the whole scene. I was only an EMT and recently graduated pre-med biology major at the time, but I KNEW that the smoke and dust was dangerous. The struggle to get masks and, even worse, get people to wear them was incredible. I had a doctor yell at me in front of a room of people for wearing my respirator because she thought it made people uncomfortable (half a block from the pile)! I also had a platoon of soldiers, among others, refuse to wear their masks while literally standing on the pile controlling access. Don't get me started on Whitman and her "It's safe" pronouncements....

I wore my mask all day long except when sleeping and eleven years later my lung function is good (ran two miles in less than twelve minutes this winter) and I'm healthy.

Good luck, OP, my thoughts are with you.

SpiffNarley3 karma

You are right. It was very difficult to get proper respiratory gear. I feel I should have brought my own. At the time, I was in a rush to get to Ground Zero and help. Lesson learned.

aColoradoan9 karma

Do you regret volunteering during the attack because of your cancer? And you are a hero.

SpiffNarley47 karma

Thank you. Every time I have a "bad day" - one where I feel particularly sick or in pain - I ask myself that question: Do I regret going? The truth is I don't. I regret that I have gotten sick. However, in the moment that first plane hit the WTC tower, I knew I had to go and help. I have spent my whole life pursuing a career where I help people in emergencies. I am not religious, but I do believe in God. I believe that my life is unfolding the way it is supposed. I don't regret going but sometimes wish my health would turn around. I am doing everything in my power to stay strong and beat cancer.

atmostheory8 karma

wow. the same thing happened to my father. he was one of the volunteers on that first day. as things were sort of in a chaotic state, not everyone was giving masks. it wasn't really the top priority. my father was diagnosed 4 years ago with this really weird stomach cancer formally only found in children. first in his family to have cancer and he passed away two years after the diagnosis... i'm sorry to hear about your diagnosis. what kind of cancer is it? You are a true hero! And please look into alternative methods of treatment such as diet changes and meditation! It may sound like some hippie crap but some people swear by it. And I know for a fact that a positive energy and a thirst for life even amongst this crisis is the best thing anyone can give you! Keep living! I wish the best to you man, truly.

SpiffNarley2 karma

Thank you and so sorry to hear about your dad. He died a hero that's for sure. I do believe in alternative medicine. My aunt is a herbalist and I have been using her suggestions. I appreciate the union between traditional and so called alternative therapy. Take care, Carolyn

MeGaZ_NZ8 karma

Cancer is one of my biggest fears,

How have your emotions been dealing with it knowing you got it from helping people?

SpiffNarley13 karma

I think because I am not 100% that I got cancer from helping, I have not rested entirely on the notion that I got cancer from helping at Ground Zero. I think a part of me is still in shock that at 39 I have cancer. My emotions range from fear to sadness to gratitude (I caught it at stage 1). I have a wonderful spouse and family. For now, I live one day at a time. Thinking into the future scares me right now. I am so scared of the cancer returning so I try not to think too far ahead.

bombino37 karma

My brother was an NYC fireman during 9/11. He arrived on scene as Tower 1 fell and helped with cleaning up for the days, weeks, and months to follow.

He too was in perfect health in 2001. Over the last 5 years he has suffered countless sinus infections and has had two surgeries to remove polyps from his sinuses. FDNY released him this year. Many of the 9/11 firefighters are on the same track as my brother. Getting sick and being released.

Let's face it - Giuliani should have never deemed the air quality to be safe.

I thank you for all you have done and wish you the best of luck. My brother got paid to clean up, but you did this out of the goodness of your heart. Simply amazing.

SpiffNarley4 karma

I pray that your brother's health recovers. I too have suffered sinus issues which were never an issue before 9/11. I agree with your comment on Giuliani. He also should never have moved the city's Disaster Headquarters to the foot of the WTC.

Chinook7006 karma

When people who have cancer say they hurt, where do they hurt?? In the area where the cancer is? Is that area especially sensitive?

SpiffNarley4 karma

The mastectomy side of my chest still hurts. Plus, chemotherapy (at least the ones I was on) make your bones and muscle ache like you wouldn't believe. I did not understand the pain involved before going through treatment either. Often my muscles feel like they are all cramping up. With hydration and time away from chemo, the pain eases off.

FusionGel5 karma

I am not good with words, so here's a song that always cheers me up. Hang in there.

SpiffNarley3 karma

LMAO. THank you for that!

Capexist5 karma

What's the biggest emotional impact from being at ground zero?

If you found out this was 100% caused by being there, would you be okay with it because of the help you did, or would you resent those who you helped?

SpiffNarley3 karma

No, I would not resent anyone. This is one of those things where I chose to be in a certain place at a certain time. Resentment takes a lot of energy, energy that I do not have. I try to focus on getting better.

midseason-burn3 karma

If you had somehow known that going to ground zero to help those people was going to result in you getting cancer, would you of still done it?

Sorry to ask such a downer question, best of luck with everything, and I wish you the best of health in the future.

SpiffNarley3 karma

I don't know. I think I would have when I reflect on the intense desire that consumed with to go and help.

Gordie_Howe2 karma

I just want to say thank you for what you did. And here are some lighter questions:

-What is your favorite hockey team?

-What was your favorite vacation?

-What genre of music do you listen to the most? Favorite band?

-Do you visit NYC often?

-What book would you recommend to a stranger?

SpiffNarley3 karma

-Montreal Canadians -My very first vacation - my partner and I went on a cruise to Alaska. I never understood "vacations" up until that point. Now I cannot get away enough! - I listen to quite a mix. Right now I am listening to a lot of Bif Naked. - One of my favorite books, and one I would recommend is the classic "Frankenstein" by Mary Shelly.