Lung Cancer

1. Panic over health changes, test results. and treatment changes.. Feel hesitant about sharing fears with spouse because he already heard a brief bit of it last week and he also takes caref his 88 year old mum twice a week.

2a. Also both ourselves and our families are neurodidiverse including autism for ourselves, BPD among some of his family, and OCD, within my family and possibly Aspergers (sp?). Also cpstd from older generations, in both our families.

No we don't have family contact if we can help it. Family involvement can make it worse.

3. I was diagnosed in June 2021 luncaner with lung cancer in the lower right lobe, staged 4a or 4b. I was advised to get my affairs in order, but was put on a chemo regime. Had a delighted oncologist 6 weeks later ,as the regime was working at the time.

4. I've had scans of all types over 3.5 years, and genetic testing. Last year, some small Mets were detected and I was put back on infusions while staying on targresso ( oral, daily). I have had difficulty with infusions, usually dealing with brain fog and some incontinence(sorry). Last fall I experienced balance problems and had a few falls within my home. my mum-in -law lent me her rolling walkerto try out. I now own one.

Along with my cane collection.
The collection which I didn't use after falling backwards off my front step while trying to use my quad cane on Sept 10 of thisyear. My back is OK now, except for lost back and knee strength from resting on the futon bed without walking much.

However I became afraid of my body/balance and my house which is about my age. And is semisplit level.

5. My back and period wobbles were becoming my biggest over the cancer.
Then I had an MRI done on my head two or three weeks ago. My main oncologist's
Associate broke the news to us (he was the "onc" scheduled that day) that there appeared to be a lesion on the cerebellum. My poor husband was shaken.

6. Now,2-3bweeks before this news I was switched off tragresso to a new med just approved by FDA. It's formulated--along with a new infusion--to target mmy cancer and possible mets. By last Thursday he had called another prescription for a steroid to work on the lesion. He wants to see how this works before pushing on to radiation therapy. But he would like meto ge ta follow up MRI-- farther had that request in by Friday.

7. So far, the steroid seems to add tothe brain fog. I'm supposed to take it 3x a day with food , along with my nightly Paxil. On Saturday, my husband and I got our flu and covid vaccinessothat effect may have added to my fog and weekend panic.

8, Monday will be my first day on my own since the steroids (he tends to his mom on Monday and Thursday).I will attempt to work from home with brain fog. Tuesday is my next infusion at 8:45. (I forgot--Monday I get a blood draw at7:30am for my Tuesday infusion. )

9. i'm wiped out physically mentally emotionally and spiritualy.
Tuesday is the election for hell which I wanted to participate in--but I can't find my ballot. Following an infusionin the morning, I don't trust myself to fill out a provisional ballot.

We did find old paper work for the Dept of moto vehicles. So now I can get my cardp tags I should have ordered last month. What the hell, im afraid to drive myself. It barely matters.
Next week is a 3 day weekend. Maybe I'll get our taxes extension filed. Like I was supposed to last month. I hate ADHD. or AuHD. My brains and life and finances are falling apart. I don't have my funeral or will planned. I'm the one that does the bills,like my Mom did. I know how that turned out when she passed before my dad.

Oh and retirement. I had to wait until this year to retire and still retain my med benefits for my husband and I, Last week the college I work for announced that we a)l have to work on campus starting January. I replied on Wednesday this week that I wanted to retire. I wanted to use next 3 day weekend to work on retirement. After the lesion news of last Thursday--
I don't know .
My phaser is set to stunned.

Anyone got a prayer or a Saint or some juju. Because I'm out.

I just want to post the truth here, that none of my friends or coworkers know and my husband doesn't fully understand.

I had a damned meltdown yesterday Sunday Sept 29. I'm 64, dx with lung cancer in 2021, still on chemo, have develop occasional incontinence, balance problems, fell on Sept 10, was diagnosed with a ruptured L6, am trying to heal my back while working from home at a job I hate, (they dont know I've a fall, they may know I am now slurring my speech because I am answering the phone lines)

...and my C-PTSD is kicking because I haven't completed a weekly work report I was assigned at the end of August because no one has completed my Training on where to find all the data.

...and now I'm panicking waiting for this week's blowup via zoom meeting

... and now I have to go and find something to eat before work starts and cry a bit for release.

Damn sorry for this post

I've started having falls in the last 12 months. Last Tuesday was outside the house. I finally went to urgent care on Friday; they recommended a visit to ER for a CAT scan. Found a flattened L6 disc. No shards which is good. They said their focus is pain management right now

The pain is doable; my focus is not falling again and find exercise for knee strength and total body balance.

I'm also under chemo treatment for lung cancer (3 years since dx)

I have a chronic fear and mistrust of my body. When will that stop?

Hi, my name is Warpig. I'm here because
I've had full body weakness for about 5 years...... initially in my search for answers I was diagnosed with multiple myeloma but as time went on my weakness got worse.......then came the shortness of breath...No specialist's that I saw could determine what that was after numerous appointments and scans......going back to my myeloma specialist.....he ordered a PET scan..... finally a lung biopsy as he suspected lung cancer......nope.....I have severe Valley fever.....the lesion in my lung was from Valley fever....that may explain the shortness of breath but not the weakness....my next appointment is with a neuromuscular specialist..... I'm trying to help with what I think it may be.........#MightyTogether

Hi, my name Jenny coxy I'm a survivor of lung cancer .

I'm here to meet new people, interact and make new friends

I wrote yesterday afternoon and my post ended up somewhere else in mighty land. But I always feel compelled to write and wish everyone a beautiful and peaceful day. Yesterday I finished a project up that I’ve been putting off for awhile. My French doors that go out to the back porch has had “scratches” where all our dogs ( minus ) Hunter would scratch to come back in. So yes I can cross that off my list. Next week, we have a estimator coming out to give me a estimate on a new porch. This one is almost 20years old that I put up back when I was physically able. I know I’ll be surprised on the cost. For what it’s worth, I follow the same advice that I give to all members. Both from life experience as well as a little book education thrown in. My younger brother and sister have been permanently blocked from every phone in this house and will not be unblocked. I don’t let negativity run my life. I’ve gotten all information on my mother from my older sister who is Bipolar so some of the medical issues she doesn’t know. She’s had a rough life due to this and she finally has a real roof over her head versus being homeless. I had to pick her up from Pasco county a few years ago as she would always being taken advantage of by some of the shittiest men one could ever meet. Sexual predators etc etc. As far as how my mother is doing today I haven’t heard yet. But yes she has bi lateral Pneumonia, and on supplemental O2. They also found she has Lung cancer that has metastasized to her lymph nodes and will be running further test. She’s 86 so hopefully they will not become aggressive in treating. When I was working in my career, we would always say Pneumonia was Gods gift to the elderly. This might sound cold but I hope that the Pneumonia takes her as it’s a peaceful way of passing. Any MD who tries aggressive treatment would be unethical. But I wanted to wish all a beautiful, peaceful and positive day! For those having a rough day, know there are daily prayers I send out to you…..David

It seems I’m always compelled to come on and at least wish everyone a great and positive day. Today has been a productive day for me as I quit procrastinating on repainting the French doors that lead out to the patio. So I can cross that off my list. I’m getting a estimate next week on just replacing the back porch. This one I built almost 20 years ago so it’s probably time. I know I’m going to hate to hear how much lol. When I give anyone here advice, it’s both from life experience as well as a little book knowledge tossed in. I follow the same advice I give anyone here. Both my younger brother and sister have been permanently blocked from calling as I don’t let any negativity in my life. If they were to write, it will be sent back without even opening it. Im getting any information on my mother from my older sister who really doesn’t understand medical issues. She is Bipolar but I love her to death. She’s lived a rough life but finally has a real roof over her head. Instead of being homeless. My mother whose 86 made it through the night and has double pneumonia to begin with. She’s on supplemental O2. Unfortunately during test, they also found lung cancer which has metastasized to her lymph nodes and further test will show more. They also found she has a blood clot in her carotid artery. Sometimes it sucks when you know what’s going on. But this might sound harsh but I hopefully she’ll pass peacefully in her sleep. I honestly think she will just due to the Pneumonia. We used to say that Pneumonia was Gods gift to the elderly. And for my mother, I hope that. It’s a peaceful way of passing. Secondly, no MD would be aggressive in treatment due to her age and other contributing factors. But I thank all of you for your post. I’m hoping that all of you are having a great day and are staying positive! Don’t dwell on what you can’t control, instead focus on what you can! Your stronger then you realize….David

Hi, my name is Ellyn. I'm looking for community and friendship. I believe I may have introduced myself before, but I have not been looking into the Mighties for awhile and lost touch. I am a stage 4 lung cancer survivor ( remission). I was diagnosed in 2017 and feel blessed to still be living life.! Although, I am far from the person I was before ca and all the treatments needed to get me into remission. Physically suffer from chronic fatigue and chest and back pain daily. I feel as though I am trying hard, but find myself discouraged and blaming myself with thoughts of (if I only tried harder and ignore this pain and fatigue that feels crippling). I believe other people , besides my own husband and close family, think I just need to try harder and have a different mental outlook. Although when I really think about it I am trying hard every day. Today I cleaned windows for 3 - 4 hours and I am exhausted! I am looking to hear stories from others suffering from chronic illness ( what ever type). Love to hear secrets on how you make it through your day. How to make and keep friends when life feels like it is getting smalller and smaller. Also, how to make on feel like they make a difference in this world and not just someone struggling to make it through the day.

Question for anyone suffering from lung scarring / lung disease- what does it mean when my oxygen drops with exercise but than recovers quickly? I notice big variations in my O2 sat from 99%-86%.

#MightyTogether #Anxiety #Depression #LungCancer

So I turned the big 65. This is not a post to illicit birthday wishes. Please don’t think it is. It’s just a bit of a lamentation on how debilitating illness causes you to lose so much living. I’m posting it for educational purposes for any who care to read it. Chronic and invisible illness is everywhere. Someone you know and love may be affected now or unexpectedly in the future. It affects every aspect of the ill person’s life and that of caregiver’s. The poor caregiver seldom gets a break and little recognition of the burden they carry.

I don’t feel like I’ve even lived enough to get old. There’s such a big gap between being at my peak just before I got sick at 33 and then being old. It happened so hard and so fast. I felt young and in my prime one day and 80, frail, and beyond sick the next. I still can’t comprehend how I was functioning one day, albeit struggling, and the next I was just broken never to recover and never to even level out or improve much.

These are not my “Golden Years”. They are hard and harsh and have been ever since I succumbed to illness 32 years ago. I will not be doing things I’ve always wanted to do and going on new adventures or enjoying simple things like spending time with grandchildren because illness robbed me of children of my own and a spouse. In general, people don’t stick around when your world is reeling and you can no longer be who you are. Nor can you meet and develop new friendships in the throes of illness and living in isolation.

As much as the only thing I ever really wanted in life was a simple life of home and family, it’s just as well I didn’t have children that I couldn’t take care of or a man who wasn’t in it when the going got tough. Even just the basics in life that children require take a lot of energy and a lot of going and doing. I know because of the big hand I had in helping raise my nephews before I succumbed to illness when their mother wasn’t expected to live. Then my mother was my neices’ daycare and I helped with them necause I wanted to. I lived in a mobile home in my parents’ back yard.

My nieces came along 10 years after my youngest nephew. They were the loves of my life and probably saved my life. I had lost everything when my oldest niece was born 3 years after I got sick and I really had nothing to live for and didn’t want to live. I had absolutely no income for two years until I won my meager disability and would have been on the streets if my parents had not graciously and without question taken me in. My body just wouldn’t work and I could no longer dance. Being a dancer was my identity. I wan’t happy not working. I had worked at something since I was 10 years old. I felt like a failure and a freeloader despite my parents never acting like I was and taking care of me willingly.

My nieces loved me dearly as did my nephews. I still felt a lot of guilt because I couldn’t be the fun aunt to my nieces that I was to my nephews and take them places and do things with them. They never knew me any other way, though, and they were always so eager to toddle across the walkway to my trailer once I let them know I was up in the mornings. It was part of their daily routine with us. We did simple low energy things together like read story books, play their children’s songs, watch their favorite children’s shows, sit on the steps and play “I Spy”, walk around the property on the days I could and look at flowers, and their favorite activity, lying on a quilt cloud watching. So even though I haven’t been a natural mother, I’ve been a surrogate mother of five.

I know no one ever really lives the life they imagined. Unexpected things derail plans all the time. Life limiting illness is a whole other curveball, though. It’s a boulder or falling rock off the side of a mountain. It comes out of nowhere at warp speed. It crushes you and injures you just as a literal falling rock would. You struggle to understand, your literal life is in jeopardy, your spirit is crushed, and in time your will to survive is because you can’t come back from the injury. Life as you’ve known it is over. You are permanently disabled and will never be anywhere near your former and true self again.

Don’t think I just let this happen. I fought against it tooth and nail. Mostly to my own detriment and certainly to my own and my family’s emotional distress. I’m truly surprised I’m still living. Not just because of the emotional upheaval and desperate thoughts of the early years, but because of the multiple real life-threatening conditions I live with that can go bad in a moment, the constant assault on my body on a daily basis and new ones always developing, muscles that don’t work well including autonomic ones like breathing, lung cancer that was undiagnosed for three years and the tuberculosis type infection that I still deal with that likely caused the cancer. I really don’t know why this body doesn’t just give up. I get up and push through every day and try to find some motivation, purpose, and small joys, not necessarily because I’m a fighter and all that lofty stuff, but necause it’s survival.

I don’t look forward to waking up every single morning slammed with such lack of energy I feel like my body shut down during the night to survival state, often wracked with pain, seldom having slept much or well, often feeling so overwhelmed with it all I want to cry, but that’s physical and emotional energy I don’t have. Life is miserable and the days are so long and tedious when I can’t manage to do something no matter how minuscule it is so I prod myself out of bed, literally stumble to the kitchen because my legs don’t have the energy to work right yet, make my tea and a little sustenance and try not to be too disheartened for, at least, a couple hours until I get a little more functional. Then I try to do something useful.

Chronically ill, homebound, and bedridden people have the same needs as everyone else. They mostly go unmet because the onus is left on the sick to initiate social interaction and since we can’t go and do, we are mostly out of sight and out of mind. The sick are often left caring for the sick because so many conditions are multigenerational. It’s a lonely and isolated life. We didn’t chose it. Others just don’t see us. If you don’t understand that we have the same needs you would have if you were in our position, you simply don’t understand the basic human condition. We don’t have the energy to stand on our soapboxes and try to explain it. We wouldn’t anyway. We need more than thoughts and prayers. We need tangible action.