Hi...I'm new here. (long)

8junebugs · New User Joined: 19 May 2008 Posts: 8

Hi, everyone. I'm here because my mom (age 58 ) was diagnosed on 5/9 with stage IV NSCLC.

The main mass is on her windpipe and extends down into the right lymph -- it's wrapped around an artery going to her brain and is inoperable. Mets are in the left lymph and liver. They're only now checking for brain mets and may not even check below the waist -- the first order of business was to start radiation to shrink the main mass, which has caused severe SOB and coughing. Before the diagnosis, Mom had already cracked one rib and broken another because of the coughing. She doesn't sleep much, as laying flat or close to it is difficult.

I'm in the DC metro area (US) and she and the rest of my family are in Vermont. I was up there the week she started radiation and will go back and forth as much as I can. I had hoped to be able to work remotely from VT but am meeting with much resistance. (This is an option at my company and very compatible with my function, but my boss is blocking it.) I've asked Mom to think about what she would prefer -- shorter, more frequent visits or longer ones further apart, and "sick" time versus "well" time. We're also talking about her spending a bit of time down here with me.

I am kind of the black sheep, in that I didn't stay in VT and I am happier with more information than less -- occupational hazard of being a journalist, I guess. I'm the only one who wanted to know a prognosis, although I later shared it with a cousin (who's an EMT and probably knows her dad's next in line for this) and my father (they're divorced, he's remarried).

We're dealing with a range of reactions, from my extreme "tell me everything" to aunts who can't say "cancer" out loud yet. Mom's in the middle -- she can say the word but thinks the doctor is pessimistic about operability. It's not hard to understand that...except for the cough and the ribs, she doesn't feel "sick."

My mom's family is extremely close. My uncle, the EMT cousin's dad, is younger by at least five years, but he and my mom look and act like twins and have lived next door to each other for most of their adult lives. So he is having a very, very hard time.

The primary oncologist has given me a "months" diagnosis without a number. Based on what I've read and heard, this sounds reasonable, especially given the placement of the main mass. I'm doing all right with this, for the most part. I'm sure I'll go through a bazillion different emotions, but right now I'm okay. I think I may have been preparing myself to face this for a while now. There's a family history (three of four in the previous generation died of lung cancer -- the other was disabled and never smoked but lived into his 80s) and she has smoked for over 30 years...sometimes very, very heavily. And before that there was the second-hand smoke from the previous generation.

I am also blessed with a phenomenal support system from coast to coast (I went to high school and the first part of college in Northern California). About a month before the diagnosis, I left my husband and moved into a new apartment on my own. This may sound like it makes the whole thing worse, but, in truth, it's a blessing to be able to do what needs doing without having to worry about/check in with/run decisions past my soon-to-be-ex-husband. We'll come in just under the 5-year mark and I'm only 30. Since Mom's diagnosis, my priorities have been rearranged and set in stark contrast -- life's too short to be with the wrong person.

Back to the details:

The radiation is over and she's getting evaluated for chemo this week. The mass does appear to be smaller and the doctor says it will continue to shrink. The doc is trying to see my mother as optimistic instead of obstinately unrealistic, and I admire her for that. The entire oncology team has been great -- much better than I expected. (The last time I was in the hospital where she's been treated, I was 7 and it was...less impressive.)

After chemo, the doc says Mom can expect to feel pretty good for a little while, but it will come back with a vengeance. At that point, treatment becomes a QOL decision. We have many things to decide and put in writing before we hit that point.

I'm not sure if I'm looking for much advice at the moment -- just reading others' posts has been very helpful and sometimes reassuring. But I wanted to introduce myself and my mom so that, when (not if) I do need to ask for your support, I've already got the guts of it out there. I greatly appreciate how open everyone is on here.

Thanks for listening...I'll be around.

Tera · Senior User Joined: 31 Dec 2007 Posts: 186

8junebugs.....I am so sorry to hear you are starting this difficult journey. My sympathies for your mom's diagnosis.

You are right, your emotions will run the gamut. It is a hard journey but one of mixed blessings because it does draw the loved one closer to you. You will look back and treasure the hard road you walk with your mom. I know. I have no regrets, but, God, I wish mine were still here with me. She passed January 5th. It is SO hard sometimes.

I can tell from your post that you will be a very big support factor for your mom and probably alot of your family who for now, may still be in denial. It can be a hard thing to do....to hold the hand of our loved one and encourage them and support them in all their decisions even when we don't always agree with those decisions.

Keep in touch. When you need it, we will be there.

helensgirl · Posted: Tue Jun 03, 2008 4:14 pm Post subject: Re: Hi...I'm new here. (long)

8junebugs,
Welcome, and you have definitely come to the right place for support--now or later--as you need it! This forum has been a really great source of "companionship" for me...Like Tera, I also lost my mom...in December of '07, due to Stage IV NSCLC, (adenocarcinoma) that was dx'd in April of '07. I am glad that you like your onco-team, as ours specialized in blowing sunshine up our...well....where the sun don't shine! Told us that they would be able to get my mom to the point of living with her LC like a person living with diabetes--turned out that the chemo was too much for her body, and she passed away without the cancer metastisizing at all. But I digress...live in the moment with your mom and cherish everything...Take care and visit when the urge hits you Smile

Best wishes for you and mom...Kim in NC
_________________
...keeping the faith in n.c.
Helen, my wonderful mom, diagnosed May, 07
fought-stage 4 NSCLC, (adenocarcinoma)
earned her place in Heaven, Dec. 14th, 07

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1265

Hello Junebugs,

Welcome to the community and I'm truly sorry you had a reason to be here. It's tough when the breathing is impacted by the tumor location, but hope she will get some relief from the radiation and it will allow those arteries to be open. My husband always had SOB issues, but his first line chemo eased that up a lot from where he started. Tumors wrapped around arteries are tricky business and we dealt with that scenario too. It's scary and has to be monitored because it could impact her heart rate and rhythm.

I see you already have a firm grip on the scenario and that's good. It's hard to accept and many family members respond differently to a diagnosis of this type. People are people, and they all cope in their own ways. Having a good support system is wonderful and I'm glad you have one. It goes a long way to keeping you sane! Very Happy

We'll be around for any support, prayers, or good thoughts for your Mom's journey. Hopefully she can get on a chemo regimen that works well and gives her some good quality time.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

trey · Posted: Thu Jun 05, 2008 10:34 pm Post subject: Re: Hi...I'm new here. (long)

Hi 8junebugs,

I am also new here. This disease totally sucks, but you already knew that. I read your post - I am like you in that I want ALL the information. My mom was diagnosed back in July (Stage I at that time) and I have probably spent 100+ hours researching lung cancer. (how come you have to pay in order to be able to read so many medical articles online???!!!)

I have also been the point person with the all doctors. My sister, is the complete opposite and I can only assume its denial, but it makes having medical conversations about my mother VERY difficult. I have sent her links to websites, etc... but its obvious she hasn't read them. After they took part of my mom's lung out, and found it had spread - my sister's reaction was to hang up on me when I told her the post-op news. Anyway, I just wanted you to know that you are not alone in wanting to know.

I am sorry to hear about your boss - I hope that he/she finds compassion to allow you to telecommute. Frankly I do my best work during off hours when I'm not being interrupted every minute. And you are right about having different perspective on life after this- kudos for making a hard, but apparently right!, life decision. Very Happy

_________________
love & pixie dust to all...

Mom diagnosed w/NSCLC adenocarcinoma stage IV at age 66, declined chemo or radiation.

	Cancer Forums Forum Index -> Lung Cancer Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others