Help me improve lung cancer outcomes!
I will be participating in a Community Fundraiser benefitting the Lung Cancer Research Foundation. Please help me reach my fundraising goal and donate today.
Your donation helps fund life-changing lung cancer research and education programs focused on improving outcomes for those affected by this disease. You have the power to give families hope when a loved one is facing a lung cancer diagnosis.
Thank you in advance for your support and generosity. Together, we can make a difference for each and every person whose life has been touched by lung cancer.
P.S. Join me on event day at the Haven Rooftop for a fundraising event - all proceeds will go towards the Lung Cancer Research Foundation!
--- My Story ---
Hey Everyone, my name is Jaymie. Most people call me Jams. Generally, you know me as the owner of WJMS Radio, friend, family or colleague...
On December 16th after a week long stay in the hospital for what I thought was a bad cough that got exacerbated, I was told I might have cancer. The next week on December 20th, I found out I had Stage 4 lung cancer in the form of adenocarcinoma. Now before you ask, no I don’t smoke, never did. And no I don’t have any family history of cancer. I am 32, active, healthy and just as confused as you. Let me explain…
To start at the beginning, I developed this wheezy cough that only seemed to happen before I would go to sleep at night. Then it started to get more frequent. Finally I got a random cold that went away but the cough stayed. I went to the doctor to figure out what was going on and was referred to a pulmonologist. That doctor gave me a brief lung test and said it’s probably asthma, allergies or some combination of both (neither of which I ever had before). He gave me an inhaler, told me to grab some Allegra, use them as needed and come back in a week or 2. So I did, and I came back and told him they didn’t really improve much. He then wrote me a script for a cough suppressant and sent me home again. This was in June.
Fast forward a few months, the cough isn’t so bad anymore, now I am just getting short of breath… Must be the asthma right? What else could it be… I’m having issues going up the subway steps, my back hurts CONSTANTLY, and I can’t work out with as much vigor as I used to before. Finally, after being told by my boyfriend, Frank, that I needed to get a 2nd opinion, I scheduled it in maybe September/October. That appt was set for Dec. 5th. (new patients usually get longer out appts).
So in between then and the appt, Frank surprised me with a proposal the day before my birthday trip to Vegas with him and my besty, Shardae. Things are looking great!! We come back from Vegas and have a few precious days left together before he ships out to Korea for a year with the Army. But we had a great week together, a wonderful trip and time in Vegas and we were looking forward to the future.
Appt day arrives. Frank takes me in. I go in to NYU Langone, give the doctor the story and the first question he asks is, “have you had a chest x-ray yet?” And I said no, no x-rays have been done. So he sends me upstairs for one and tells me to come back down when its done so we can go over it. Ok cool. I come back down. He sits me down with a look on his face and asks me if I am feeling ok? I looked at him and said, well yeah, I’m fine. He followed up with well your entire left lung is covered in fluid. I should be admitting you to the hospital. To which I stared in disbelief. So all this to say, after dropping Frank at the airport on that Saturday, I reported to the ER on Monday with my best friend in tow to get this lung situation resolved. Thinking it was going to be brief. Until they let me know quickly that I would be there for at least the week for this situation. The week I was in the hospital after having a very painful chest tube in for the entire 6 days, they drained 2.5 liters of fluid from my chest cavity. But their concern was that my lung hadn’t fully inflated and the parts that had were spotted. They sent me for a biopsy and the results came back positive for malignancy. For the first time in my 32 years, my life flashed before my eyes. Rather.. all the things I HADN'T done yet flashed before my eyes… So I left the hospital knowing that the fluid they removed was cancerous and that until the biopsy results came in they couldn’t be sure how far along or what cancer it was.
The longest 4 days ever….
December 20th, I sat down with my oncologist who explained to me what adenocarcinoma is… that its stage 4 because the cancer is creating fluid. And that there is no cure, and no real remission for this. Just treatment to make life livable. Life expectancy can sometimes average 6 years on the medication…. I’m 32.
I still want kids, I still have a wedding to plan and I have so much more to do with my life. They told me that I will be on medication for presumably the rest of my life. A medication that I can NOT get pregnant on, and they are unsure of how it will affect my chances to get pregnant later in life. I decided to hold off treatment for a bit... Between December 20th – January 22nd, I had no treatment done. I was undergoing the fertility process to freeze my eggs. A 2 week long, stressful, and expensive out-of-pocket cost that I happily paid for the ability to have children with Frank someday.
The day after the eggs were retrieved, I started my medication. For those curious I am on Alecensa (Alectinib) which is an ALK Inhibitor. My cancer is a gene cancer where I am ALK positive. The medication is a targetted form of chemotherapy. Thankfully the side effects are manageable. And on this medication, the tumors in my back are shrinking and the fluid will stop developing. My regimen is that I take 4 pills in the morning and 4 pills at night. Plus a few other vitamins and supplements I am taking to help offset some of the side effects of the chemo pills.
And since the hospital stay, I have had 2 more in-office lung drain appts because the fluid is still generating. After the last one, the doctor had me undergo a procedure to put a pleural catheter in my left lung so I would not have to keep coming in and going through the pain of the drain in office. A home nurse now comes to my home 3 times a week and drains my lung there. The catheter procedure is not as bad in terms of the drain, but the aftershocks of pain I get when its done are what knock me out. Each drain I usually get about 400mL out. As my lung starts to fully expand, and the medicine really starts working, the fluid will get less and less, and the color will start to get lighter. I got the catheter in on February 8th and the doctor says they generally stay in for about 2 months. So, fingers crossed, I will have this thing out just in time to welcome my fiancé home in May for our 2-week vacation. As it stands right now, on March 12th, I am averaging about 300mL a drain now.. slight progress.
I say all this to say, I am remaining positive that I am going to beat this, and it will just become a part of my kick-ass survivor story, but I need help. My hospital bill for that first week was $100K. My out of pocket was very minimal thanks to my job. Plus, the cost of the fertility process. And I have received a few other bills for the lung drain procedures. I am waiting for the catheter bill to show up too. While my job insurance is wonderful, it doesn’t cover 100% and this is just the beginning. The medication I am on is $10K PER MONTH. Which I literally can not afford without the insurance. So essentially, I am married to my job. I literally can’t afford to live without working. And without a safety net or cushion, that is a very scary feeling.
I love you all so much, thank you for taking time to watch my lengthy video and read my equally lengthy story. And of course for your support, prayers, donations, and well-wishes through my battle.
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