I'm way too sober for this sh**, waiting for robotic bronchoscopy.
Hi , I'm Ronnie. I am 56 years old 33 years clean&sober and currently a 28 year survivor of a stage 3 Astrocytoma. My mom was diagnosed with nonsmall celllung cancer the day I got home from surgery and although we were laughing about being a sad lifetime movie and doing chemo together it metastasized to her bones then she died as I finished radiation. Mine had escaped diagnoses for 7 + years due to no insurance and noone listening to a young female recovering addict. I finally had culinary union insurance and lucked into a clinical drug trial. So there I was just living and minding my own damn business when few months back I was assigned a new medical provider and she ordered *alla the things* bloodwork, mammogram PAP, sleep study and a cancer screening CT on Friday the 13th (because of course) which led to a pet scan ordered Monday and appointment with pulmonologist weds and robotic bronchoscopy coming up Friday there are 8 nodules . most concerning ones are 8mm 9mm and 2.3 x 1.8 cm. I'm really not sure what I should be doing right now if that makes sense, like on a real and practical level. I don't have any family left and haven't told all of my friends yet. I'll tell them and my 28 year old daughter (who has serious mental illness after meningitis at age 3 and landed in prison until March so that's a hard one) I'm not freaking out I didn't have any symptoms ,haven't even had a "real" cold since before Covid but I have been kind of flat emotionally, "tired" ,avoiding people (which is mostly due to being in a high Covid area and liking my brain enough to protect it, has been easy because I'm an introvert but it hasn't bothered me at all)and just thought I was depressed by climate change ,rising fascism and the like. Any practical suggestions on what I should do? The brain tumor luckily only affected my ability to do algebra and stay organized. Sorry this is so long and rambly I am in dire need of a snack and a nap. Thanks in advance for input I miss my mom she was super organized and on top of everything:)
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@silvergirl29, that's a lot. I can imagine you miss your mom as you face your diagnosis. It sounds like she was someone who not only knew your struggles and triumphs, but shared your humor and ability to laugh no matter what life throws at you.
Let me first see if I've got your current diagnosis straight. Recent screening (finally) after years of suspicious symptoms, 8 lung nodules have been found on your lungs. This coming Friday you are scheduled to have a robotic bronchoscopy. Have I got that right?
You asked "Any practical suggestions on what I should do?" I think the answers in this older discussion will put your mind at ease. @lls8000 might have more tips to share.
- Scheduled for a Bronchoscopy and feeling anxious: Any tips?
https://connect.mayoclinic.org/discussion/bronchoscopy-procedure/
I know you also miss your mom's organization skills. I wonder if you could try to channel your inner mom and start a binder to organize the health journey. I say a binder, but you could use a folder on your phone instead if electronic record keeping is more your style. Keep tracks of doctor's names, contact information, tests and test results, blank page for questions as they pop up.
It sounds daunting, but could help. Do you have a place where you jot down questions as they come up? How are you doing today?
@silvergirl29, good morning. You sure do have a lot on your plate and with this thought, I strongly urge you to reach out to at least one more friend who can help you after your procedure. It's important not to isolate yourself at a time when you might possibly need help in the future.
I hope that your doctor has filled you in on the procedure and what your home care will be.
I think of the phase that you are in as a limbo phase. I assume by what you've written that you've had all of your tests and scans. What I did was get my house cleaned and stuff put away. I purchased food and anything else that I might need. You can google what they might be.
You will need to line up a ride to and from the hospital. You might want to take walks, and set up a journal that Colleen talked about. Print out all of the medical tests that you have had or get copies of them and organize them according to date or procedures- keep it simple so that if you need to refer to them, they will be easy for you to find.
I wish you the best and hope that you will let us know how you are doing.
Merry
Hi Ronnie (@silvergirl29), First of all, congrats on 33 years of sobriety. You've had more than your share of life's obstacles, and you've managed to trudge through those, you'll find your own way to manage this too. I have to agree with the others, it will be helpful if you can find one or two close people that you can share with and lean on as needed.
The waiting is often the hardest part: waiting for tests, waiting for results, waiting for procedures. Through your life, you've likely established coping mechanisms, even if you didn't realize it. Try to go back to those things; spending time with close friends, taking walks alone, going to a movie to take your mind off things, etc. Regarding practical steps you can take today to prepare for might come, I'm assuming that your pulmonologist office has cleared the procedure with your insurance company. You can ask the doctor's office if a "prior authorization" was completed.
The pulmonologist likely gave you an idea of what to expect and everyone is different. Early in my diagnosis process, I had a regular (non-robotic) bronchoscopy. It was a fairly easy procedure, but they didn't need to go all that deep into the lungs to get the samples that they needed. That morning, I warned the anesthesiologist that I can get nauseated, and he did an excellent job pushing the meds that I needed. The sedation and recovery were not difficult for me. I had some soreness in my throat, but really that was minimal. For my procedure, they took the samples, and ran them through the lab right away. By the time I woke up, they were able to tell me that I did have cancer. Then there were more tests and more waiting, to determine the specific type of cancer.
As I experience new symptoms or think of questions for my doctors, I still keep notes on my phone. I know I won't remember when I had a slight dizzy spell, or what I wanted to ask. Tracking the notes helps me.
Early on, I also kept a binder of insurance forms and notes. The notes usually included info related to phone calls with nurses or doctor's offices. I knew I wouldn't remember who I talked to, or when, and it was helpful to be able to look back on those as I was waiting for appointments or follow-up phone calls.
I have scans every 3-4 months, and mine are scheduled for this week Friday, I'll be thinking of you as you have your procedure on Friday.
Hi Ronnie,
I am 68 and just went through the process in July. A 2.1 cm nodule was seen on my 6 month cat scan. It had grown from .4 to .6 to the 2.1 cm over a period of nine months. I also did not have any pain and I was blessed that that cat scans were done. A Pet-scan was done next and it revealed the probability that I had a malignant tumor and I was immediately scheduled for the biopsy. Mine was a robotic biopsy and the result showed it was malignant. The team did a fantastic job, and as was stated in another comment, the only side effect was a sore throat from the equipment that was used to get to the nodule. I went home the same day and resumed my normal life. The next step was to get a cardiac clearance which included a stress test. After I was cleared I was scheduled for my robotic surgery. Due to the size being greater that 2 cm they had to perform a lobotomy and remove the left upper lobe and samples from 25 lymph nodes. I was in the hospital for 2 days as they monitored my breathing and discharge of blood from the surgery. They removed the tubes and gave me the clearance to go home. I did have a problem a week later where I noticed my arm on the same side that the lobe was removed and started to swell and and a crackling sound when I squeezed my arm. Went to the emergency room where a new tube was put in to release built up oxygen. 2 days later sent home again with that issue resolved.
After the surgery I experienced pain in the rib cage area above where the lobe was removed. Medication helped but then I could not get pain meds for 2 months due to every pharmacy near me had these on back order from the producers. Each person will have pain but the length of time and level will vary. I even had to go to the emergency room once because I could not breath without pain. I was given pain meds there and I felt better. At home I would not lift anything more than what a gallon of milk weighed and tried to not bend. I had to alternate standing and sitting. Even today I have some pain in that area. I believe that I would rather have a some pain rather than letting the cancer spread and I am cancer free.
Some tips that I used included putting items in the refrigerator at a lower level so that I would not to reach up to get them. I went around the house and performed the same exercise. I had a tool to put on socks and pants from a back surgery. If you get one of these tools it really helps prevent bending over. I also walked as much before and after the surgery to build up my strength. I was really surprised at how much fatigue I had in my legs after the surgery. I used the breathing tools provided several times a day to help with shortness of breath. I still have some shortness. Finally my girlfriend, family, and friends were their to support me. I bought a dog before I found out I had cancer and she never left my side. I had taught her how to use a stair aid to get onto the bed and I never had to pick her up. I went through some depression due to the limitations and pain but all my support team helped me keep focused on recovery. I also prayed a lot and, even though I still have some minor pain and swelling, I am most thankful for being cancer free. I hope this helps you prepare and gives you some insight what may be ahead. Knowing helps being prepared so Please discuss with your medical team on what to expect during each stage. I was not prepared for the pain and swelling because I did not know what to expect. If you can defeat alcoholism you can defeat this and my prayers will be with you.
Hi Ronnie,
I am also 56 and I get it- I am the main "breadwinner" in my family. I provide the medical for all of us and I am on medical leave. I had a lobectomy and 10 lymph nodes removed after 3 months of chemo- the next step for me is radiation. It is all very stressful and telling my daughter was the hardest part-
My suggestion is to take one day at a time. Think about recovering from your cancer, just one day at a time after surgery. Make sure everything is in your reaching area before surgery for when you get home so you don't have to bend over and or move too much (toothpaste, toilet paper, things in the refrigerator, dishes, your clothes, if you have pets their food and bowls) Get big roomy shirts you won't want to wear a bra, I am still braless and wearing giant t-shirts and it has been 4 almost 5 weeks since my lobectomy. Get a grabber.
Congrats on being sober, that is something to praise yourself for daily.
Take time telling friends and family.
Thanks for sharing this is all hard- and weird, sometimes I think...Am I talking about myself? Do I really have cancer?
april
Wow 🙂 you have been through it , Thanks so much for the advice , I am already used to thinking about where I put things to avoid bending down too much because of lower back issues . You are so right having information ahead of times makes things easier. A friends retired service dog recently has been staying with me and he is 11 and mellow and is great to have around , my cat is adjusting to that idea 🙂
Thank you so very much , I absolutely have missed my mom every day and inherited her sense of humor and curiosity. I didn't inherit the OCD spotless clean and totally organized thing though I have a legal pad for now and am getting a hard cover notebook instead of the envelope backs I started with :)!
Thanks 🙂 It is really is weird , totally weird to think could I have cancer *again*, in a different place after 28 years of thinking of myself as a cancer "miracle" brain tumor survivor which took a good 12 years in for me to really relax and trust but not really because my yearly brain MRI still freaks me out a bit. Then I didn't have time to really think as I went from MRI immediately back to Neurologists office then to a surgeon who was holding her office open to get me in within a few days. I was 28 ,a new mom and surrounded by family . They "gave" me 3 years on 2/29/96. So it is just beyond bizarre to be here now and thinking these things!!
Are you doing okay?
april
I am okay yes, 🙂 been meaning to update but every time I go to something derails my attention lol. 7 out of 8 were positive Adenocarcinoma, lymph nodes looked clear and I'm meeting a surgeon tomorrow, Thanks much for checking in I'm glad that I have a solid base in recovery for sure and that I have the previous experience that I do, I know that everything could change in a heartbeat but I feel pretty okay and optimistic right here and now.