Been off line awhile....so update

[TJM]

Hey all!

Been way to long since I posted. Quick summary. Finished Chemo and just started radiation. Last CAT scan was clean so I am NED for now. Radiation is adjunctive. As a reminder my tumor is Large cell endocrine tumor that I expect will be coming back.

So far treatment is going fine but I still feel like crap. Today was the best day in weeks so I am hoping its left over from Chemo.  Because of headaches I did my last three chemo cycles with no anti nausea medicines and did have weekly bouts of it....but it wasn't horrible.

Worst part for me is I have been in my dark place for a month. Zero energy and not getting stronger as fast as I expected. Add in all the craziness of the world and it's down right depressing.

I am wishing all of you health and stamina. I'll get back to my sunny self once I start feeling better. Hopefully today is the start.

So many life decisions to make coming up. The biggest one being work. Really dont want to go back to all the stress....but the money is good. On the other hand I'd rather not spend the potentially last months of my life stressing.

I'll figure it out. I'll try to be a bit more active on the board but, regardless if I do, you all are awesome and a God send.

Peace

Tom

[Tom Galli]

Tom,

Good to hear from you again and I'm happy to learn of your NED status.

Depression during treatment is tough, I found depression during recurrence scanning even tougher. And truthfully, with my very reduced pulmonary capacity and resultant "confinement to quarters," I am experiencing depression now. I use a mind over matter method. I tell myself I'm capable of deciding what kind of day I'm going to have, decide to have a good one and do, most of the time. I also find I need to keep my brain focused on significant activity. I'm an avid bird watcher but have never fed the birds in the summer. I put a feeder outside office window and am entertained by both visiting birds and the antics of my cats watching the birds. I am also writing a novel. I don't know if it will be published but it will be finished and that keeps me mentally engaged.

I understand the stress of working and lung cancer. I was on short and long term disability for my year's worth of surgery but returned to work for 8 years after. Surgical treatments and first line chemo left chronic pain to deal with and sleep became difficult. Work stress spiked my chronic pain levels. I powered through all that and looking back I'm not sure why. My work managing the design and development of high technology devices was very challenging and I enjoyed the challenge. But it finally became too much to deal with and I took early retirement.

Retirement however introduced a new problem--boredom. I quickly finished all the household improvements my wife desired and then what? What to do everyday became my problem. We went on grand vacations each year from 2012 through 2019 and these long vacations took time to plan and arrange. We had a spring cruise of the Greek Isles booked but that was cancelled with the virus onset. Now, confinement with the COVID weight adds weight to boredom and depression. So I'm a 16 year survivor and I struggle with depression. Helping others with this forum and volunteer work with the LUNGevity Foundation gives me a sense of purpose but these still leave a significant period of each day where I ask myself, what am I going to do now?

One thing is certain for me. I won't give up and I won't give in to coma inducing antidepressant medication. I didn't survive lung cancer to live in a chemical cloud. This has been a very long answer because I believe everyone on this forum is struggling with treatment, worry of recurrence, and COVID induced lockdown, and this might prompt a general discussion of how each of us copes so we might learn new techniques. Tom, sometimes it is difficult finding the sun in Longview, Washington. I hope you find some internal sunshine to get you through the cloudy days. Most importantly....

Stay the course.

Tom

 

[Lin wilki]

Thanks Tom for your honesty!  I was only working part time before Covid so used to unproductive time!  
The way I stay involved in life is playing with my 2 year old grandson who lives right by me. He has been a godsend during this shut down. Just s as couple hours playing outside or just walking- makes my day. 
I can’t say I don’t worry, mostly about progression since I’ve never been NED and don’t think I will be. I resigned myself to the fact that I will always be on some form of treatment. I hate side effects but I am tolerating treatment well. 
It just helps having others to talk to that really “get it”

[Rower Michelle]

Hi Tom,

Good to heat from you. Your Post is well said. I think we’re all more or less where you are.  Some days I think the media just flips a coin to figure out how they want to terrorize us.  
You predicted this accurately months ago!  Every time we load up the freezer I think about you.  Now I’m beginning to wonder what we’re going to do with the TP we’ve collected incrementally over the last few months.  

Best news ever that you are NED, now that is something fabulous!   Carry on. 
Michelle
 

 

[LouT]

Tom,

So glad to hear that your scan was NED.  That is the end goal we all strive for.  Sorry to hear about the difficulty with the chemo.  I haven't had it so I can only imagine how terrible it must feel.  Hang in there buddy, you'll get through this.  You're in my thoughts.

Lou