Living with lung cancer - Introduce yourself & come say hi

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.

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 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

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

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?

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

Hello Elizabeth and welocm to Mayo Clinic Connect. I am sorry that you have to handle so much at once. It's a lot. I'm also dealing with a lot right now along with another cancerous lesion.

First off I will tell you that I have had lung cancer for 25 years and my only pain was recuperating from surgery. Not everyone experiences pain from cancer itself. And if you do need surgery then you will need help, at least for the first few days, or until you can stand without being dizzy and are off pain meds. You won't be able to lift anything heavy for a while., or drive.

I think that your best bet is to find a social worker at Loma Linda and see how their department recommends, or a religious organization. Is there a senior citizens organization near you?

I don't want to ask this, but have you considered downsizing everything and moving closer to your hopsital? Who will take care of the lab and Bruce, the goose?

Hello. My name is Elizabeth and I live in a community north of Yucca Valley, which is in the Mojave Desert, California. (Yes, it is very hot here.) I will be 79 in two weeks. My husband, a Licensed Clinical Psychologist, Ph.D., died in March 2022 from Aspirating Pneumonia, so I am now living alone with our Labrador Retriever. I am his Office Manager and heir, so it is my duty to close out his practice in Yucca Valley and take care of personal business. Finding help in the desert is almost impossible. For example, it took me three months to move charts, furniture, equipment, etc. to my home in my pickup truck. People just don't want to work any more.

So here I am, with no time to grieve for my husband, trying to help his distraught patients, continue with office procedures and take care of a home, the labrador, 14 chickens, and Bruce the goose.

To add to all of this, my Primary Care Doctor decided to run a CT Scan, which came back: "Impression:

1. Right upper lobe perihilar node with mildly irregular borders measuring 1.3 cm, of concern for malignancy. Recommend PET/CT correlation or biopsy.

2. Several foci of groundglass attenuation within the right lung area nonspecific."

The first thing I did was My Chart my Cardiologist and sent him the report. He immediately is referring me to a Loma Linda doctor specializing in this kind of problem with Mayo Clinic experience I had a heart attack with stent 1-1/2 years ago, am taking meds, and my cardiologist at Loma Linda is working with me to lower my blood pressure which is erratic. I have not seen the new doctor yet, as all of this has happened within the past few days.

My concern is that I have no relatives and am the "last one standing" in my family of origin. My only son died in 2013. and neighbors are few and pretty much in the same boat I am. If I have to go to the hospital for surgery on my lungs, will I be able to care for myself when I am released from the hospital?

From reading some of the comments made by others in the forums here, it appears that cancer is extremely painful. I have no pain at the moment, just a little fatigue from my constant working on closing my husband's practice. The question is: Will I be able to take care of myself?

I am very happy to have found this forum. I am an avid follower of Mayo Clinic's work.

Anyways, here I am, kinda groping in the dark as to how I will survive.

Elizabeth

Meka- Just found out from my team. There are two lesions in my middle right lobe. There is one that is pure gg and they won't touch it. But the larger or the two has changed so my radiologist wants me to have a PET scan and a lung function test. I have had a lot of tests in my life, like most of us have. A lung pulmonary test is a nuisance, it's uncomfortable, long, and if there is another word that one too.

If my lungs are good for SBRT then I will have that. (https://connect.mayoclinic.org/group/proton-beam-therapy/)

I have asked for the tests to be put off until late August as I have a foot operation that has to be done. I've had two already and this should fix everything. Otherwise, I won't be able to exercise and help myself to heal. Also since I have multifocal adenocarcinoma the lesions are very slow growing. He agreed.

Thank you so much for asking!

Merry

Merry, what happened with your scan?? Thinking of you and wishing good outcome 😘