Judi L

[Judi L]

Hi!
My name is Judi and I’m new to this so please forgive me for not knowing what to say. I’m not even sure this is where I’m supposed to introduce myself. 🤔

 I’m 73 and live in Ocean County NJ with my husband of 50 years. I was diagnosed with  Squamous NSCLC in October 2017 and, needless to say, life as I knew it changed overnight. Being an optimist, my mindset was (and is) that someone survives this so why not me. I’m fortunate to have an amazing medical care team and personal support system but realize that I need a connection with others who are also living with lung cancer. Despite challenges throughout my LC  journey, I’m doing well as I continue with immunotherapy.  But there are moments when the enormity of LC overwhelms me, especially since Covid.  I rarely let anyone see me with anything but a smile on my face, not even my doctors.  So I guess that’s why I’m here....not to complain or be a downer, but to feel less alone and hopefully help others as well. 

Thank you for “listening” and be well!
Judi 😊

[Donna G]

Hi Judi,  welcome.   I will be 73 on August 4th.  I was diagnosed when I was 50.  I had Stage 3B  lung cancer.  

I love your attitude.  Positive attitude is really helpful to your body .  Prayer is also great medicine.  There was no immunotherapy 23 yrs ago.

It is wonderful all the "new" options that are available now.  Please keep us posted on how you are doing.

Donna G

 

[LexieCat]

Hey, Judi, 

Nice to meet you! I'm in Camden County, right across the river from Philly. I had an upper left lobectomy three years ago for what turned out to be Stage Ib adenocarcinoma. Since then, I've had no additional treatment, but have been getting CT scans every six months. I just went for my visit with the oncologist after my most recent scan, and received the lovely news that it appears I may have a new cancer in my lower right lobe. Next step is a PET scan--just waiting for the insurance authorization on that. 

Needless to say, the prospect of going through all this again is a less than happy one. I told my doc I'd really rather not lose ANOTHER portion of a lung. He said let's see what the PET scan shows, do some further tests, and said if it comes to it, I might be a candidate for CyberKnife (SBRT) in lieu of surgery. 

I hear ya on how COVID just adds to the stress of dealing with any of this. It's a rare time that I'm TRULY happy I live in NJ, though--our governor has done a great job of managing things here and I'm just hoping NJ stays in good shape while I'm dealing with this stuff again. I'm still working--I worked from home before the pandemic, so this has affected me less than a lot of people, but I really miss going out and having fun. I just bought myself an e-bike, and I hope whatever treatment I choose allows me to continue to have some fun on that later this summer/fall.

Anyway, glad to have you here. This is a terrific group--I've been less active for the past year or so--had other things going on. But I'm sure glad they are here for me when I need them again. 

[Lisa Haines]

Hi Judi,

  Nice to meet you and sorry you too are "living" with Lung Cancer, and now the added fear of Covid.   I am a Stage IV NSCLC (Adeno) survivor who celebrated my 5th Cancerversary in March, pretty much when Covid hit.  I had "big plans" for that Milestone and was headed to Vegas and the to spend a week with my Son in San Diego (I live in MA, so I try to get out to see him a few times a year).  Now with Covid, we had to not only cancel that trip, which was also  "Bucket List" trip - but I now wonder when it'll ever be safe for me to get back on a plane, re-book our Vegas adventure and visit my son.   I also do not want him getting on a plane and coming here, but I miss his so much and this is longest we've been apart (since he relocated to SD in 2012). 

   I really HATE how much Covid is stealing from all of us in some many ways, particularly those who are living with Cancer and any illness they may shorten our lives.  Our time is precious and since my diagnosis I've done my very best to live each day to it's fullest - making wonderful memories with my family and close friends.  Now, we are so restricted and most of us can't be with family and friends.   

   While I am very thankful and blessed to be doing this well with advanced LC, I still want to get out and LIVE my life.  I have two precious little grand-daughters, who I am able to now see again, but I know that may have to change, if Covid increases again in our area, of if I need to go back on treatment.  Thankfully, I am stable and have now been off treatment for almost four full years.  Covid here (in MA) is at an all time low and we have not had any new cases in our community for over a month and there is only one active case.  A huge difference from April and May. Thankfully masks are mandatory her and have been since March and we are still not fully open.  What has opened, is under very strict new protocol and it seems to be working.   On the other hand my son (in San Diego) is in one of the places that is seeing huge increases and they have once again had to shut down many of the businesses that had slowly opened and they had been doing well.  It's scary to know how quickly it can all change, but I HOPE if we all continue to do what they are asking, we can hopefully stop it form increasing.   I live in MA and in the early part of Covid we were hit very hard.  We were third in the cases counts (per capita) and I feel so relieved that we are doing so much better now.  I do worry about Fall and even though the new vaccines do sound very promising, I'm not one who is going to rush out and be one of the first to try a vaccine that has been so fast tracked?  It makes me concerned, so I guess we will wait and see.

Happy to know you are doing well on Immunotherpay, I believe that Nivolumab was my life saver and I'm so thankful that I had a wonderful response even though I also had side effects.   

You've come to a wonderful group, LUNGevity it a fantastic recource for Lung Cancer patients and the forum and their FB Groups are full of many very supportive and caring folks. I would have been lost and different points in my cancer journey without the support of fellow LC pateints and survivors.  We know and understand it best and we also know exactly how it feels and how it affects our lives.

Take care and nice to meet you!

[LouT]

Judi L,

Welcome to our forum.  We're glad you found us, but sorry you need to be here.  I also had Squamous NSCLC.  In my case I had a lower-right lobectomy and no need of further treatment.  I'm so glad that you are normally an optimist.  I tended to "catastrophize" everything about my diagnosis and luckily I found this forum and the super people here.  There were so many stories like mine and people who have also had a much worse struggle than mine and survived this disease.  Please hold onto your hope.  Share all you want here; ask any questions and know that people here will share from their experiences so you'll have some pretty good information to accompany you on this journey.  Stay strong and keep doing good things for yourself.  Lisa is right when she says we should live our lives as fully as possible each and every day.  I look forward to hearing more from you.

Lou 

[Rower Michelle]

Hi Judi,

Just wanted to jump in with a warm welcome. Although I live in the KC area, I was born and raised in NNJ (Essex County).  Here in this Forum you will never be alone.  You’ve already met a number of the family members here.  This is a great place to talk about anything at any time. No one wants to join this club but we’re glad you found us. 
Michelle

[Claudia]

Hi Judi. I wanted to welcome you to the forums and I'm sorry you are here. Your story is similar to mine. I also have Squamous Cell and have been in treatment now for a year and a half so far.I also am an optimist and have found that it's a good thing to be. I try not to worry until there is something happening to worry about. I am mid-scan (2 months to go until my next one) and I am hoping for a clean scan for the first time. I mean, why not? Other people have clean scans so I can too.  It's nice to meet a fellow optimist . Please feel free to ask any questions you may have. We have some of the smartest people in the world here. I am doing well and I hope you will too. Peace, Light and great scans to all, Claudia

[Lin wilki]

Clean scan. Ahh!  What a wonderful thing! I almost feel like that will never happen to me!  I have been in treatment since last June and not until I started Kadcyla in April my first scan showed tumors dying from inside. I know the response rate for my HER2 amplification is not great so I find it hard to be really optimistic 

Good for you -  I hope you get clean scans

[Judi L]

Thank you all for your welcoming messages. I wanted to respond to each of you directly but have not yet figured out how to do that.  I’m new to blogs/forums so it’s a guessing game right now. I’m not even sure if I used the right icon to “like” each reply. 

My cancer was inoperable bc there were 4 tumors of varying sizes which had totally collapsed my lung...they were so intertwined that they couldn’t even be measured accurately.  The diagnosis seemed to come out of nowhere...a long story. I opted for an aggressive treatment (SWAG) of chemo and radiation, simultaneously over an 8 week period...5 days/week. I’d lost my brother, mother-in-law and a few friends to LC so I wasn’t playing around. Looking back, I got through those 8 weeks like an out of body experience. I don’t think I broke down until they were over and every now and then I’ll get a flashback and wonder if that was really me needing to use my knuckle to turn on the microwave bc my finger wasn’t strong enough.  One month after SWAG I began what was to be one year of immunotherapy infusions, every 3 weeks.  One year turned into 2 and now I’m in year 3. They can continue as long as the cancer remains stable, my body tolerates the treatments and insurance covers it. So far, so good. 

After my initial treatment, the tumors shrunk dramatically although not as much as the Drs had hoped for and there were lots of complications along the way.  I have radiation induced pneumonitis in one lung which has closed the bronchial tube.  I developed a severe infection in a cavity that formed where a tumor had been...it took 3 months of mega doses of antibiotics for that to clear.  Next came a met brain tumor...talk about scary.  Gamma Knife Surgery ( not actually surgery) and a month of heavy duty steroids took care of that.  Next was a pulmonary embolism...apparently fairly common with LC.   After a few months on Xarelto it shrunk, only to be followed by the discovery of another brain tumor....much smaller though since I was having MRIs every other month. So...another Gamma procedure.  The great news is that my brain has been clear since May 2019!  There have been other minor speed bumps along the way, mostly effects of medications. WHY AM I TELLING YOU ALL THIS?????  To encourage every one that there is SO much hope and to never give that up!   I never imagined ever going through all this and being able to say that I’m doing well....a different kind of “well” than before but well nonetheless. 

I will admit that Covid has me more freaked out than the cancer. My heart goes out to Lisa not being able to see her son! I can’t wait for the day when I can hug my kids and grandchildren again.  I’m fortunate to see them....outdoors, masked and 6’ apart...but in person.  As the numbers go down and others are out and about,  I’m even more fearful.  We live at the shore so there’s an influx of people for the summer months and I won’t go near the beach or boardwalk which I’ve always loved. Home has become the only place I feel safe. NJ is definitely in a better place than many other states right now but I fear getting complacent. The stakes are too high with such damaged lungs. All of you get that for sure!!
 

It’s crazy how I rarely talk about my “situation” and found myself rambling on to people I’ve never met. I apologize if I bored you all! Be well!


 

[LexieCat]

How could an adventure that harrowing be BORING?? Sounds like you've been through the wringer--so glad to hear you're doing so well now. 

Hopefully we'll all be able to go out again eventually--my family is in Colorado and I usually go out for Christmas, but that won't be happening this year. And I'm sorry you can't get out and enjoy your lovely beach. I don't blame you for being cautious. 

[Tom Galli]

Julie,

I grew up in the suburbs of Philly and my family had a summer home in OC (Seaspray Ave in the Gardens). We lived at the beach as kids during the summer and relished in those wonderful cool sea breezes in the years before air conditioning. It was an idyllic place to grow up, and I understand what its like to live in such a wonderful area confined to your home.

I had a slug of multiyear treatments also and was diagnosed in February 2004. My GP and oncologist advised me to isolate indoors during COVID-19, period! And, I am growing tired of being caged-in so I am freaked also. But I am determined to survive this virus. I didn't go through the pain and suffering of nearly 4 years of cancer treatment to be taken out by a virus.

As I read your post, it is like recalling complications in my treatment: pneumonitis (several times), severe infections (several times), pulmonary embolism, and CyberKnife but to my lung and not brain. So I understand the drill and all the speed bumps. There is hope indeed and your story proves the case. Hang in there and...

Stay the course.

Tom

[TJM]

Stay the course Tom....

[ColleenRae]

Welcome Judi! What a journey you have been on.  I continue to be amazed by you - all of you - and your stories of survival here! 

I learned in 2016 that I had suspicious nodules; one in particular (RUL) that could not be biopsied. I ended up having a lobectomy in Oct 2018. Good choice, as it was cancer. Stage I. I was fortunate as no other treatment was recommended at that time.  I now have another suspicious spot on LUL which Dr's suspect is another cancer in situ. They are following this and have suggested SBRT radiation might be an option.  I will have another CT in September or October to check on my original surgical removal and this new "spot".  My last one was in March, right when COVID had erupted. I remember being frightened just to get the CT. I wore gloves and a surgical mask to that appointment, and insisted I wait outside until they were ready... The other patients in the waiting area looked at me as if I was nuts!  I'm no less frightened this time around (and now they actually will make me wait in my car in the parking lot until my appointment time!)

I wish I could say I'm an optimist.  I think I'm a failed optimist!  Unfortunately, I do not have a support system - but I am someone else's support system I have an adult son (22 y.o.) on the Autism spectrum who lives with me.  This has been quite a journey for both of us. He is loving and supportive, but limited in the support he can provide (i.e. he does not drive).  While I am trying to brace myself for "more cancer" to deal with, he is in what I think is denial... saying "we don't even know if it's cancer yet".  I wish I had his optimism! 

COVID-19 has definitely affected me.  Yes, I'm afraid of cancer, but I was willing to address it and fight it. COVID is something else altogether.  I also have thyroid nodules that are being followed. I have cancelled a follow-up ultrasound 2x now since the pandemic started... I just can't bring myself to go, knowing the sonographer will be within inches of my face (whether they wear a mask and face shield or not; doesn't really reassure me!). I will also be due for a colonoscopy next March, and I am already convincing myself to put that off as I don't want to be anywhere near the hospital... I know these aren't good decisions. I just feel incredibly vulnerable.

But I swing back and forth between being optimistic and pessimistic... or maybe I'm just being delusional or foolish.  My son and I decided to buy a home together - I want nothing more than to know he has permanent, secure housing in the future - especially when I'm no longer here.  We made an offer on a home last week that was accepted.  We weren't even able to view the home in person - we did this via a video tour and Zoom!  It's about an hour from where we now live, and we have to cross two borders (U.S. and Canadian) in order to get there. Am I nuts? Most nights I think I am, and then I get up in the morning and all I think is "I want to go for this. Life is short. I want to enjoy however much I have left of it. I want my son to have a home."  Am I crazy to buy a home not knowing what my "cancer status" is?  All I know is I don't want to die where we currently live..  But it's further from medical care (and that presents some challenges). The inspection is next week and that may change everything.  I keep telling myself to think positively, but it's hard with a history of cancer. I feel like I always need to be preparing for it.  I am tired of that fear. I really just want to live and live well - but COVID certainly put a halt to a lot of those dreams for all of us.  I never leave our apartment except to get groceries at curbside pickup... and I don't even like doing that. We used to walk a lot, but too many people are refusing to wear masks still and they don't keep their distance. Now my exercise is confined to a spin cycle in the living room!

Hopefully I can drag this cancer thing out for a few more years... hopefully it will be a chronic condition that I can live with and still enjoy life and my son.  That is one thing I am very grateful of - that we live together. I can't imagine how hard it must be for those of you who cannot physically be near your loved ones.

So, I apologize for speaking so much about myself. I'm actually fried tonight and am probably rambling... I just wanted to say hello, glad you are here / that you wrote and to thank you for your inspiring presence and outlook. That helped a lot tonight. I know one's outlook is important. That I can work on. Support system.. well, that's a difficult one. Especially in the time of COVID (no family connection; we'd just moved to this city when I learned about the likely cancer... I didn't want to try to make new friends and say "Oh, by the way, I've got cancer and could really use a friend to help me"...!) 

I pop in and out here, but I have found this to be a very welcoming community that has educated me and offered support. I wish I could meet each and every one of them. I hope you will keep sharing your optimism with us.