My Story

[Judy M2]

I've recently joined and posted a couple of comments to others' posts. At LouT's suggestion, I am introducing myself and telling my story. Apologies that it's a long one. 

In June 2019, I lost my voice and went to the doctor (not my PCP, who wasn't available), who diagnosed me with allergies and suggested I follow up with an ENT.  He diagnosed acid reflux. I was on omeprazole for months without improvement, so I went back to my usual PCP in October 2019 and at that time, she heard crackling in my lung. She immediately sent me for a chest Xray and that was quickly followed up with a sinus and chest CT scan. She called me into her office on a Friday at 5 pm and gave me a general lung cancer diagnosis at age 66. Then a flurry of procedures followed in very short order, and the final diagnosis was Stage IIIB NSC adenocarcinoma with Exon 19 mutation. 

I went back to the ENT in November 2019 and learned that the tumor in my left lung was pressing on the nerve to my left vocal cord, permanently paralyzing the vocal cord. I had a bulk injection of Teflon into my left vocal cord which has given me a partial voice for 12-18 months. This was a surprisingly rough procedure and I am not sure I will repeat it. 

Both my radiation and medical oncologists planned for aggressive treatment, so I started 30 sessions of radiation and 6 rounds of chemo (Carboplatin and Taxol) in December 2019, ending on 1/15/20. About 2 weeks into radiation, I was fatigued, but worse was painful esophagitis that progressively got severe. I regret not getting a feeding tube that the chemo nurse suggested. I became severely deconditioned and was so dehydrated on my last day of radiation that I could barely ring the bell. I arranged with the chemo center to get hydration 3x per week. I wasn't able to get the right pain management at that time. 

On the evening of Valentine's Day 2020 I experienced severe abdominal pain that landed me in the emergency room. A CT scan revealed that I had a perforated sigmoid colon and had emergency surgery that night. I did have sepsis and would have died without the surgery. I was in the hospital for 10 days and then a rehab facility for another 10 days. Luckily in the hospital I was able to meet with an excellent pain management doctor and she prescribed methadone (later replaced by Fentanyl patch after I went on Tagrisso) for the esophagitis.

After I was discharged I was still so weak but have slowly improved, and today I am lucky to be pain-free and almost back to normal. I do think my hospital and rehab care was excellent. 

I went on Tagrisso in March 2020 and my PET/CT scans are now showing good progress. My medical oncologist is very happy with my progress to date. 

So why did I get lung cancer? None of my doctors can be sure, but I was an office worker in the exposure zone in Lower Manhattan pre- and post-9/11. So I've enrolled in the 9/11 Victims Compensation Fund and the World Trade Center Health Program. I did not know that the WTC Health Program offers free annual screenings for different types of cancer (including lung cancer) and I now wish I had enrolled years ago. Anyone who is a 9/11 survivor should enroll even if you are currently healthy. 

I have had some really difficult experiences these last several months and am very happy to be feeling well again. My poor husband has been an excellent caregiver throughout but I know this has been stressful for him. I am vigilant about Covid-19 precautions and even wear a mask (and face shield) outside while walking my dogs--yes, it can be done! 

 

[Tom Galli]

Welcome here Judy.

Your diagnosis trail and treatment experiences will be very useful as you interact with others on the forum, particularly the newly diagnosed.

Welcome aboard and...

Stay the course.

Tom

[Sabacat]

Welcome, Judy,

You've certainly been through the mill!!!  Thanks for sharing your story (inspiring!).   So good to hear that you are back to feeling well and things are looking up for you! 

Susan 

[GaryG]

Sorry you had such a bad time. You are certainly a fighter.  Hopefully you are on the right track now and on your way to N E D. Welcome to our blog.

[Scruboak]

Welcome Judy! Your story is a testimony to stick to it . 

[LouT]

Judy 

Welcome to the family.
     I’m so glad that you decided to share your experiences with us.  You’ve learned so much along the way that is going to help someone who comes to the forum reeling and in shock from their diagnosis.  
    I hope you stick around and continue to contribute and share; you will help many.  
Lou

[BridgetO]

Hi Judy and welcome,

Thank you for sharing your story with us. You've been through a lot. I also hope you'll stick around and keep us up on how you're doing, as well as continuing to inspire others who may bee having a hard time.

Bridget O

[Susan Cornett]

Hello Judy -

Welcome! Wow - that's quite the journey to get here but you did it. Sounds like your current therapies are successful. Thank you for sharing your story. I look forward to reading more posts from you.

[LexieCat]

Hi, Judy,

Sorry to be late with my welcome. Sounds like you have had quite the harrowing adventure--I'm glad you're now doing well on Tagrisso and feeling better.

Glad you're here with us!

[Babs]

Welcome Judy,
 

Wow!  Your journey is truly inspiring! Maybe I missed it in your post, but did you ever have surgery?  
 

Glad that you’re feeling better and pain free!  That’s huge.

Babs

[Mamma Om]

Hi Judy M2, Welcome to our Lungevity group. You have certainly been through a lot already! I know what a sudden Merry-Go-Round we are put on right after a lung cancer diagnosis. And then you had the perforated colon, the dehydration and lack of nutrition, the chemo and radiation. Gosh, you've done really well, and it's good to hear you are feeling better now. We all have our stories and every case is different, and I am glad to be in these times when medicine has advanced so much and offers us so many treatments. There is hope now, where in the past it was not always so. Sounds like you have excellent medical care, as well as a husband as caretaker. Keep up the healing, and your good attitude, and I wish you well. Mamma-Om

[Judy M2]

I did not have surgery related to the lung cancer. The location of the large tumor in my left lung made it apparently inoperable. The oncologists were pretty confident that the radiation and chemo would shrink everything. 

Thanks to everyone for your replies! 

[Staying Hopeful]

Hi Judy,

I'm on this forum as my Dad has NSCLC.  I'm so glad to hear you are doing well on your targeted therapy.  This is probably a strange question - but how did you enroll in the WTC Health Program.  I worked down there, too, and I remember just how bad it was and it freaks me out.  They lied to us for months and months and my company was way too quick to get us back down there.  We were out less than 2 weeks and it burned forever it seemed. 😢

[LexieCat]

Hi, Hopeful, and welcome.

I'm sure Judy will be along shortly, and will be glad to tell you whatever she can about the WTC Health Program.

You can feel free to start a new thread if you'd like to share about your dad's lung cancer.

Glad you found us--this is a great place for information and support.

[Judy M2]

@Staying Hopeful, I'm so glad my story has found you, and I can give you all the info you need. I agree that employers had us come back downtown way too soon while it was a burning war zone. The first responders were the first to get sick and pay the price, and now workers, residents, students and visitors are getting sick. 

The website for the 9/11 Victims Compensation Fund is www.vcf.gov. It contains links to the application and required paperwork. I applied right after my diagnosis in October 2019. Since the process can be daunting, I decided to engage the dedicated 9/11 NYC law firm Barasch & McGarry to represent me in the entire process. Their fee is set by legislation and cannot exceed 25% (I believe) of any reward you receive. You can also visit their website at www.post911attorneys.com to learn more about what is involved. 

It is important to get affidavits of presence from 2 people who can certify the time you were in the exposure zone during 9/11/01 through July 2002.  Even if you aren't sick, it's essential to get those affidavits now because it can be hard to find the people as time goes by. You do not have to be sick to file an application. It will just be inactive unless and until you get certified with one or more of the 68 health conditions that are presumed to have been caused by 9/11.

Although to date I've had 2 physicals by the World Trade Center Health Program, Covid has greatly delayed the certification process, and I won't get my first interview until mid-May. Once I finally get certified into the WTCHP, I will be entitled to free healthcare for the rest of my life, and any expenses I've incurred to date will be reimbursed. Since I am on Medicare, I don't have to use the WTCHP doctors for my treatments. Instead they can just watch over my oncologist's shoulder if that is my preference. 

All these years I never knew that the WTCHP offers free annual cancer screenings, and I really regret not taking advantage of that long ago. 

Hope this all helps. Feel free to PM me and we can connect about this if you like. 

I also hope we can provide support for your dad. 

[LexieCat]

Very helpful info, Judy! You know, a friend of mine who died of lung cancer several years ago was on her way to work (she normally got off at the WTC station) the day the towers were hit. I don't know when she continued back to work downtown, or how much exposure she may have had afterward, but it makes me wonder. 

One of the great things about these forums is the way people are willing to share their knowledge--thank you!

[LouT]

Hi Ladies,

There seems to have been a host of illness that can be traced back to the WTC and the aftermath is broad.  Like asbestos and certain areas of the country that, in the past, were rich in uranium it just wasn't known how the strong the potential was for there to be effects on the health long-term.

Lou

[Judy M2]

@LexieCat, I commuted through the WTC every day for years, and also worked in the towers for months in 2001 doing diligence prior to the sale of the leasehold to our client. Your friend's family could still make a claim to the VCF for her death but note that time is running out.

@LouT, yes, it's a long list of illnesses. The WTC was constructed before asbestos was discontinued in construction, and there were many more toxins released from the burning materials. When I talk about a war zone downtown, in the aftermath there were large communication wires running along the sidewalks, heavily armed military presence, toxic smoke everywhere, and spooked people. That's when metal detectors were installed in downtown office buildings. 

[LexieCat]

Unfortunately, I don't have contact info (or any info) about any family she might have had. Our relationship was rather limited in scope.