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This all started February 2017 when I had a fall and injured my ribs on the right side . I went to the emergency room the following day and had them x-rayed. That is when they found a small spot in my left upper lobe. They just said to go have it checked out. I was with Kaiser at the time and immediately set up a CAT scan followed by a PET scan. Both were inconclusive so the pulmonologist wanted to do a bronchoscopy. So we did in March. The bronchoscopy came back negative and inconclusive. The pulmonologist wanted to do a further biopsy. At this point I was completely asymptomatic I have not even had a cold in over 9 years. So I decided to just leave it alone for now because I felt amazing. And so many different people said I've had a spot on my lung for over 15 years and then fine so I thought it was nothing. I did a round of antibiotics followed by x-rays in October. Still nothing changed. He wanted me to get another CAT scan but I couldn't understand what that scan would show that the other ones had not. Then at the end of the year we were going to be switching insurances so I decided last minute to get a cat-scan in case I ever did start having symptoms I'd have a current Baseline. That was December 23rd. On January 3rd I had a phone consultation with the Kaiser pulmonologist to read the scan. He said the area had grown significantly and somebody needed to biopsy it. He actually said we need to go to the emergency room. So we did, they let me go home with the agreement that I would get up the next day and find a new pulmonologist with my new insurance. So January 4th I got up and found Dr Pai in the Gwinnett pulmonology group. He happen to have an appointment that day. When I consulted with him he agreed that somebody needed to biopsy the area. So he had an appointment the very next day.on January 5th I had my second bronchoscopy, this time with a tissue sample. Our follow-up was not until March 21st in case it was a bacteria, sometimes they can take up to 8 weeks to grow. So we waited for March 21st. At that appointment he said the game plan would be we'll get another CAT scan with contrast and if the mass is still there the best idea would be just to remove that part of the lung. So we set up the CAT scan for April 10th with a follow-up on April 12th and a meeting with the surgeon on April 17th. It was a long long wait but we finally got scan and I had my head wrapped around getting surgery. But when we went in for a follow-up on the 17th we got a big surprise. The mass had grown again since December and now spreading to my lymph node. And they found a mass on my kidney. This news was a huge shock. At that point the doctor said even though I had tested negative for tuberculosis that it was acting like that. He put me on isolation and sent me to the TB Clinic. From there I stayed and isolation for almost a week. They were having a pulmonologist come in on Tuesday that they wanted me to meet with. So on Tuesday the 17th when I showed up at the clinic, I had a slight fever and the doctor examined me, I was having a really bad day and he suggested I go ahead and admit myself to the hospital. So on Tuesday the 17th we checked in to Gwinnett Medical in isolation. I met with the pulmonologist there and they determined I needed to have another bronchoscopy with a biopsy of the lymph node. What was different about this one than the other ones was that pathology would be live so as he took samples of tissue he could hand it off and they could tell him yes or no if they had anything. The other biopsy had come back negative for cancer and TB because they were not actually getting to the tissue. So I had the surgery on April 19th and we got some devastating news . after all this time it came back positive for cancer in the lymph nodes and in the mass. So I have basically had cancer over 14 months and didn't even know. At this point I am fully symptomatic. Prior to the biopsy in January and I still was not experiencing anything, but after biopsy I developed a cough so much that I fractured a rib. I have been coughing up blood and more recently I have lost 10 pounds since January. I just have no appetite and I'm so tired all the time. Joseph and I made a decision to switch to Emory Winship for my care. All signs kept leading I'm pointing there. As very sad to leave my group at Gwinnett because I develop such relationship with Doctor Pai and he helped me through so much. My new pulmonologist at Emory is Dr Steuer. My radiation oncologist is dr. Higgins. We are still playing the waiting game because they were not able to Stage me and your treatment pins on what stage are in. They say now I am a stage 3B which can be treated with radiation and chemotherapy. I had two other spots show up in my body after a pet scan with contrast on the April 25th. A spot on my spine and my adrenal gland. With my follow up with Doctor Pai on the 27th he still could not stage me because of those areas and he knew I would be switching to Emory on Monday. I met my new oncologist on Monday the 30th. Every Tuesday at Emory they have a tumor board and he wanted to present my case to all of the oncologist to see what they thought. That Tuesday I have an appointment set up with the radiation oncologist dr. Higgins. She agreed she did not know how to Stage me either I was going to present to the board to Stage me as 3 and start treatment. But I got a call the next morning from her that they needed more detailed Imaging to determine what stage. So my MRI of the brain(customary with all lung cancer that you check the brain,too.) and pelvis scheduled this Friday the11th. And my follow-up is 1/16. My prayer is that they can find my determine what stage I'm in so that I can start treatment. Many of you know that Joseph just started a new job January it was much slower to get to going there than expected. I've been out of work since April 11th. We will update you as frequently as possible using this message board as a way to reach everyone at once.
Hello all, I just wanted to post a quick update. I'm doing pretty well after 5 months since Jenny has passed. I'm still grieving, which is not surprising, but am doing ok. I started a new position as director of operations at Autohaus Social in Midtown Atlanta at the beginning of the year and business is good. After 20+ years in automotive, I have landed my dream job. In March, I am moving to Decatur to be closer to work and to downsize. I am excited for the move and to take my average of 3 hours of commuting time down to 45 min or less. The new place is a 3 bedroom ranch with a big, fenced in back yard for Vayla. I still have a lot of packing and organizing to do but it's coming along. I thank you all for your support and love both throughout Jenny's sickness and after. She touched so many people in her life. In April, I plan to record a song I wrote for her about 10 years ago with the members of my old band (Something Left After Misfortune) in her honor. It is not a lamentation but a song written for her in her prime reflecting her personality and nature. I will share this recording when finished. Thank you all again, Joseph
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