Consult at Sloan, PET Scan
Consult scheduled at Sloan, Bergen satellite on 12/1 with Dr. Isabel Preeshagul.
PET scan scheduled 12/5.
November 28, 2022
Spoke to pulmonologist today about body pain and swelling. He is ordering another chest X-ray and we will drain the cavity again, if needed. He gave the OK for moderate exercise and he is also ordering PT for me which I’m excited about. #bonehealth #staystrong
November 30, 2022
Last night’s chest x-ray shows the pleural cavity has refilled with fluid and I will need to have another thoracentesis either tonight or hopefully I can hold out until tomorrow after my consult with the doctor at Sloan. The fastest way to get the procedure is at the ER so as long as I am breathing OK I will check myself in late tomorrow morning.
Sloan Assessment December 01, 2022
Hi everyone. I’m at Sloan. Their surgeon is doing pleurx – a catheter that will be inserted into my pleural cavity and drained 3 x a week until the treatment starts to control the fluid. That’s today at 2pm.
They are running bloodwork for genetic testing and gene mutation. They will also test the pleural fluid they take out and may do a future lung biopsy.
The doctor here said she needs those results and the PET and an MRI to really understand my case.
She is hoping I will receive my first treatments starting Dec 12.
I will need someone to drive me to and from chemo if I get chemo, which is likely, so I need to try to make those arrangements.
Sloan Outcome December 02, 2022
A long day at Sloan with my sister. Thank you Karen, I am so grateful for you!
Our day started at 8:15 with a debacle at registration and then a long wait for the doc. Apparently all the tests and docs I uploaded to their portal didn’t reach the doc even though I can see them. After all that though we met with Dr. Preeshugul who is very energetic and brilliant. She confirmed I am stage 4 but said she needs more data.
At Sloan, they want to do all their own tests but they do that because they are fast and they can get results internally quicker. They did a blood test for markers and also for DNA gene mutations. I was examined by Dr. P. and my exam was good except for my lung pleural cavity being very full. She basically needs more tests — PET and MRI and Sloan does their own stains to put together a treatment plan. Her hope is to have my treatment plan and to have me begin treatment on 12/12.
She did say she would be 100% honest and if my prognosis wasn’t good she would tell me but we just don’t know enough right now.
Dr. P. did not want me to go to ER for the thorocentis due to risks of scar tissue and infection so she arranged for Dr. Park, a lung surgeon right in the building, to see me that afternoon.
It wasn’t until 4ish we got to meet with him. He presented three options for me. The first was surgical at Sloan NYC which I couldn’t do because the procedure is out of state and not covered by insurance. The second option we are scheduling for Monday and the third option he did right there in office.
#3- Dr. Park tapped my pleural cavity and drained TWO LITERS of fluid and left some in there for the Monday procedure.
I can’t tell you the relief I felt. My sister Karen said color was back in my face. The relief not to have that pain and pressure feels just amazing!!!! Their team stayed late FOR Me! The dr., his two nurses. I am so grateful!!!!! After a chest X-ray we left and sister began her long drive back to Westborough.
Monday’s plan — option # 2:
Under sedation they will insert a camera into my right lung. The camera will allow them to visually see the mass and also the pleural thickening to determine what it is. While they are in there they can take samples. Then they will also insert a temporary catheter. I will be able to drain fluid on my own every other day. Once I begin treatment and the fluid build up slows, they will remove the catheter.
I hope this update answers everyone’s questions. I’ll continue to post as I know more.
I am still working out transport on Monday and then they did tell me if I start chemo, I will need rides at least the first week. It really depends on how I handle the treatment. Being single, without a partner or spouse to help, is one of the biggest challenges of my treatment.
My Brain is Still Working – December 05, 2022
First time in a waiting room like this for any type of scan. Someone forgot the chilled water with cucumbers. Good news. MRI shows no cancer in the brain! ☑️
Miss Lady Bits December 07, 2022
Miss thang… I’ve nurtured you since I was a young girl getting my first period cramp, yet you are casting off CA 125 and today we saw it in the cytology. So, Miss Arsenio Hall, you are the source. We need to have a talk. Seriously.
