Living with lung cancer - Introduce yourself & come say hi

Kinda sounds like "The good, the bad, and the ugly." Hate the lung function test myself, but had SBRT on RT lower. I have MAC also. How's that for short. Have to be able to move, so here's to great results from the foot surgery. More energy hugs your way!! I'm back at the end of September, Mayo, Rochester

Please keep in touch. I'm here for you and with your experience, there are a lot of people who could benefit from your story. Have you met, Sue..@sueinmn? She has MAC also. She is a Mentor in the lung health group. It might be worth your while to check it out.
https://connect.mayoclinic.org/group/mac-bronchiectasis/
I'm sorry that you have this. Has it been horrible for you?

Sorry, muti-focal andenocarcinoma is what I have, did not know MAC stood for something else, my bad,

Hello Merry. I am very happy you replied and thank you for the hug.

I empathize with you regarding "another cancerous lesion." Hugs mean a lot. Being the office manager for my Psychologist husband, I know hugs feel good because our patients looked forward every week to their hugs from me; especially the children. I miss those interactions.

25 years of cancer! You are amazing! All I ever hear about is 5 years and you are gone. Mayo Clinic is fortunate to have you as a mentor. I will pay attention and listen.

Yes, indeed, living in the desert has its challenges. I live in a rural area north of Yucca Valley. Most of the homes here are on large acreage, and filled with us old folks. My home is on 77-1/2 acres and the house, which my husband and I built 20 years ago, is at the top of a hill with a million dollar view. I really would like to stay living here.

When Covid came along, all the community organizations, including the senior center, closed and most people took shelter in their homes. The transportation to hospitals and doctors outside of Yucca Valley is non-existent. I am relying on a neighbor to help me with transportation. But ... he has ADHD and forgets, is unorganized, and unreliable. My Cardiologist has helped with appointments over the phone. It is a predicament.

The local hospital (Hi Desert Hospital) has scooped up the ambulances for themselves and emergency patients can ONLY go to High Desert Hospital (Tenet run) by paying them off along with the nurses in the hospital. The hospital would not keep my husband in the main part of the hospital for more than three days and wanted to move him to their nursing home, which at the time was inundated with Covid patients. We said no and took to Home Care with a Home Care agency, which didn't work out too well, they didn't show up half the time. So, when my husband got bad, it was off to the emergency room, stay three days, and then home. He went back and forth 3 times. Bridge Home Care came (we changed home care nurses) and the nurse examined him and said we needed to get him to Eisenhower Hospital some how. So we put him in my neighbor's SUV and took him to Eisenhower (1-1/2 hours away), where we were met by Eisenhower staff and they said they wouldn't take him because he came in a SUV and not an ambulance. My neighbor, the ADHD guy, who is a retired Fire Chief gave him a few words and the hospital took my husband, where he died.

Now back to my situation. So, you are saying that I really only need someone after the surgery until I feel confident that I can do it alone. Would care after surgery be 24/7 or will care like Bridge work (one hour visits 3 x week?) How many days does the hospital keep the patient?

Oh, my Labrador would go to his trainer until I was able to take him back. Bruce and the 14 chickens would be fed by my my other neighbor, who by the way is recovering from liver and bladder cancer surgeries.

This is so overwhelming. I find it best to keep busy, go on walks with my Lab and just keep moving. How do you cope?

Thank you for your response. I truly appreciate it.

Elizabeth

I would have made that mistake when my doctors thought at one point I might be developing it. LOL- I thought that he was being redundant.

Hello Elizabeth- Good morning. I know that it would be very difficult to move from the home that you and your husband built. I was throwing it out as an option only. After my husband retired we thought about moving, even to France, but decided that living only an hour from Mass General, my hospital, was far enough. So we stayed in RI. Now I'm dealing with a house remodel and a new lesion and a husband who has Parkinson's. It is indeed too much and overwhelming and all horrible but I go on because there really isn't any other option for me. And I bet for every other person in this group, no matter our silent thoughts. We just go on.

Saying one foot in front of the other, one step at a time is so accurate. Crying, screaming, and asking why, well they are all things that help us mourn our lives as they were before cancer. That's how to cope. That's part of how I have coped. I've hidden in my bed and flown to Europe. I've walked in local races and talked in front of the US reps and senate and helped kill a cigarette bill in RI.
https://my20yearscancer.com/
I have written a blog and I am part of the Connect and Mayo Community. This is how I cope outside of my loving family.

It's early yet for you to have mourned all that you have lost and move on. I've had years to do this. Be kind to yourself. Get your lab to hug you when you need it and cry your heart out. Nap when you are tired and eat cleanly.

I am here for anything I can help you with. You will find your way, Elizabeth. Given time you will discover where and how to move forward based on how you've done it in the past.

Yeah for you!! I have to have a PET and lung function test because of one of two lesions found in my middle right lung. This will take place late August probably. Oye, another one!

@ranc- I am late coming into your conversation, I'm sorry. I also haven't seen a reply to Colleen's questions. If you are this ill and your doctor isn't acting well towards you, you do need to go to the hospital. I am wondering if you have?

Good Morning Merry. Thank you for your reply.

Regarding moving, our situation is different here in the desert. I live in the Joshua Tree Monument National Park area. Investors from Beverly Hills have decided that the desert is the perfect place for them to make money. Residents are NOT happy about it. It will ruin our eco-system. We are being inundated with Air BNBs. I constantly have realtors trying to get me to sell my home. Sounds like I could make a profit? Yes, indeed. However they won't pay me for the land, just the house. So ... why should I give them $4-8 million and I get $500,000? Not very good business. Many people have sold. The people that live in these communities are not rich ... mainly elderly. So, if I sold the house, where would I move to? Prices for homes are outrageous. And I would have to pay much higher property taxes.

My task is going to be finding a reliable (that isn't ADHD)) driver who doesn't charge a fortune.

I am 79 years old August 8. If I have no treatment at all and just let things go and pray for the best, how rapid does cancer spread? It probably depends on a lot of factors I'm sure. Which is worse pain pain?

I have so much legal work to do before I go to meet God and my husband. I still have things to sell and give away. I still have all the taxes to do, patient's charts to purge, and a corporation to close out. I have wall to wall boxes in my home from our now closed office that need attention. It will take me at least a year or two to complete all this paperwork. If I go through this medical process will I be able to take care of business?

I want to set up a Foundation in my husband's name for kids to go to college. I would use the proceeds of the sale of the house (after I am gone) to start it. But ... in the meantime I want to live in this house. This will take a while to set up. So, I am looking for legal input on how to do all this. In the meantime, I am living off Social Security. It all can be done, but do I have enough time? Or do I have to come up with plan B to get these kids who live here a college education.

In addition, moving would still entail everything already on my plate plus moving to another house that would cost all my proceeds from the sale of this house and I wouldn't be able to set up the Foundation.

I know pure gg stands for pure ground glass, of which I have in my right lung. What is it and what does it mean? Is it dangerous?

Thank you again Merry for being kind. I truly appreciate it and will include you in my prayers.

Elizabeth

Hi Elizabeth, life does throw us some stuff, that is for sure. To answer your question about being able to care of yourself, I had similar issues. I am 80, and also live alone. I had a CT-scan (it sounded like yours - only I had more stuff), followed by a PET-scan. I sent my scans to Mayo and Video Assisted Thoracic surgery was scheduled three weeks later. They planned to do a biopsy and then remove the mass given the high probability of cancer. That way one does not have to come back. They told me that 95% of the people go home after one night, but I stayed two nights and then went home. I was told not to drive for a week and not to vacuum for two weeks(no problem there). Regarding pain, I did not have a big problem. My side was sore, and my arm stayed attached to my side for a while! They want you to cough frequently, and that hurts in the beginning, but they give you medication, so it doesn't hurt. I was off all meds within 5 days. I went home on New Year's Eve and was afraid I might have to go to a Covid filled emergency room on a holiday, but all went well. I was not even seen by a doctor the first month after surgery given the risk of Covid and my vulnerability. I went for an x-ray 3 weeks later and all good. I did test positive for Covid a month after surgery, and that slowed my recovery as far as energy level I took an anti-viral which helped a lot. I have no idea where I got Covid as I am a fanatic and had self-isolated and only did curbside pickup. Hope this decreases some of your anxiety. P.S. At the same time as the lung mass, I discovered I needed a coronary stent. I had to wait for the stent because otherwise I could not do the surgery. I did the stent a couple of months later. In your case, I imagine you are well past the dual anti-platelet therapy so not an issue.