Jump to content

Newcomer: Hi and Thanks For Being Here


Recommended Posts

I am Linda and I am the only daughter (only child for that matter with no extended family to turn to for support) of my 74 yr. old mom who was just diagnosed with stage 3B non-small cell (squamous) lung cancer (I am not used to the lingo yet) -- it was a bit scary as she didn't know or acknowledge that she was having any symptoms: she was just getting weaker, quit driving, and complained of back pain; she was coughing alot but said it was just sinus stuff -- and she is trained as an RN!; her reasoning skills went really bad on me and I had to call 911 to have her hospitalized over Christmas (she doesn't remember much of it). Anyway, she is now on 5 litres of continuous oxygen and has a collapsed portion of her right lung from the size of a tumour which blocks a major passage to the lower portion of that lung. The oxygen maintains an oxygen saturation of 94-96 at rest. During active therapy her sats go into the mid 80's: we are hopeful that that will change with tumour shrinkage.

I am not sure if she is out of her pneumonia yet (she still gets breathing treatments for that). She's currently out of the hospital and in a skilled nursing facility for observation -- she just started chemo on Monday (taxol). During that session, her lips turned blue and her oxygen sats went into the 60's with a heart rate that ranged from 25-170+ bpm (she did that in the hospital once too and had to be moved to the cardiac floor for a day or so). She is scheduled for six chemo sessions (once per week) and then 6-8 weeks of radiation treatment so far.

Anyway, we have been told nothing yet of what to expect from all of this (not even expected side effects!). Her hospital pulmonologist told me that she probably wouldn't survive chemo/radiation and that she would be lucky to live a month; her chemo and radiation onocologists aren't saying much at all, but seem much more positive than that. In fact, they wonder why she isn't home and that really frightens me for alot of reasons.....mom isn't totally mentally "right", though it isn't all that noticeable to those who don't know her (it's got to be part of the disease process for her, because she was just fine until December -- her bloodwork got all messed up but even with that fixed, she still isn't totally recovered).

I just lost my dad to aggressive brain cancer in Apr 2005. That one was an onset with no warning and was 8 weeks from diagnosis to his passing -- the doctors said the same sort of things at the time: well, 3 hospitalizations during that time....him coming home the first time with a cane and quickly becoming bedridden before my eyes and requiring my 24 hour care and lots of phone calls to unresponsive doctors....nope....not doing that one again! That was so intense for me and if it hadn't been for me, he wouldn't have had the right med combinations or anyone's attention near soon enough -- long story.

Anyway, I had to quit my job and I am now running his estate and a 20 acre farm with 2 sick horses (they also require intensive daily care and they are my mom's passion)...let's just say my plate is so beyond full that I am now on blood pressure medicine due to overwhelming stress load. I am taking a stand and not rushing anything until I know what I am dealing with -- is really important to me that mom get the best care she can. Mom won't advocate for herself, but I hope to know what to do for her before she runs into more troubles with unexpected side effects or complications. I intend to bring her home when I know I have the right resources in place to meet her needs -- we are alone and in the country and have no clue what home care to have available -- I can't sit by her 24/7 with everything that's going on.

This is long, but anyway, I am researching like mad this weekend to find out what questions to ask her chemo onocologist on Monday -- I'd like to know, in addition to the standard questions, what questions everyone wishes they had asked in the beginning that would have helped make their journey easier (if there is such a thing).

Thanks for this site -- I found it via the bulletin boards at the American Cancer Society....someone mentioned it there and, well, here I am! I'll have to learn how to do the profile thing soon too....just give me some time on that: things are rather harrowing for me on a daily basis and it takes me a bit to finish my follow-through on items ('cause there's so many of them for me).


Link to comment
Share on other sites

Hello Linda and welcome... You have come to the right place for support.

I feel for what you have taken on; running the farm and caring for two ill horses is a full plate without the added stresses. I'm sorry to hear about your dad, and I'm sorry your family got hit again with this so soon.

Your mom might start to feel a bit better when the tumor shrinks in size, allowing better airflow and NOT spitting its nasty metabolic products into her blood. You don't mention if she ever had cardiac problems before.

If you have her with you at home for the entire treatment time, you're going to spend a fortune's worth of time on the road driving her back and forth. I don't know what her chemo schedule is, but the radiation is generally 5 days a week.

I survived my cancer; I am fortunate to be here. Miracles do happen.

Your mom is blessed to have such a fighter on her side.

Keep us posted, and remember you have found a good group of warmhearted people here who can share your journey -- are sharing your journey.

Good luck and keep us posted.



Link to comment
Share on other sites

Welcome to this site.

I am sorry you lost your dad and tht your mom and you now have to deal with the lung cancer.

You might consider what stance your mom would want to take regarding treatment. Some pursue a very aggressive treatment in order to knock the cancer back as far as possible as quickly as possible. For instance, some people do chemo and radiation at the same time, which would be very aggressive. Others separate the 2 treatments to make the overall treatment more tolerable. Maybe your mom would just want to take a treatment that would be effective in controling the cancer, yet be less agrressive and easier for her to tolerate. Deciding what approrach to take would be the first step. Then, you could discuss with the oncologist what the specifics of the plan are.

I think gemzar is easier to tolerate than taxol. you might ask the oncologist about using gemzar. The usual standard is 6 rounds of carboplatin/taxol or gemzar for first line treatment. Lately, some oncologists have included tarceva with carboplatin/gemzar or taxol for women who have never smoked. Ask your oncologist about that.

You should get your mom to sign a release so that you can have access to and keep copies of her medical records and reports.

I think you should visit a major cancer center to visit with an oncologist.

I hope you mom shakes the pneumonia and can find a treatment that works well for her.

Don M

Link to comment
Share on other sites

Hi Linda,

It a coincidence, my Mom was also an RN...No symptoms until one day she couldnt swallow. Its nice that you will be taking care of your Mom...I was happy that I was able to do so but yes it is a full time job. As far as questions for the doctors in my case they would not give out info on the prognosis which was very frustrating for me....her cardiologist gave her 4 months max to live and she lived over a year so I guess thats why they dont want to say. Best of luck in your role as a caregiver...well be hear


Link to comment
Share on other sites

Dear Linda, Sorry you have to be hre but Welcome!

Per your Mom's confusion; just make sure that she gets a brain scan to rule out tumors or lesions. It is amazing what they don't do and don't tell you..but I don't have to tell you, do I? Taxol is protocol so that sounds OK. You are wise to not let them do anything until you have checked it out. There is age bias in many facilities when it comes to aggressive treatment so be on the look-out. That's all I can think of for now. Keep us posted.


Link to comment
Share on other sites

Linda,welcome to our support family.You will find many knowing and caring people here.Sorry to hear about your mom and all that you have on your plate right now.

I think one of the very first caregiver rules stated on here was to take care of the care giver.Make sure you don't wear yourself down.

Link to comment
Share on other sites

Just a welcome to the group.

You have a full schedule to look after,

sorry for your father and now your mother,

hoping she regain her strength and can go

home soon.

Take care of yourself you have so much to

look after that you may neglect yourself

and it is important for a caregiver to be




Link to comment
Share on other sites


I'm am so sorry to hear what you are going through. Life is not fair! I lost my Father to LC on 11/18/05 and I got to tell you it really stinks he was only 66 years old. I found alot of support on this website and I hope you do to..

My thoughts are with you and your Mom!

Take care of yourself too!!!


Link to comment
Share on other sites

Hi Linda,

Your plate is certainly overflowing. G-d bless you for taking on so much. I can see from your post how much you love your mom.

I am just sorry that you have no one to help you. This has to be so hard on you. Please try not to stress too much and wear yourself down. You must take some time no matter how short just to clear your head and give yourself some down time.

Keep a positive "Addietude" and know that LC is not a death sentence. They have come a long way with treatments. There are so many survivors on here who were told a couple of months, and they are doing so well years later.

One thing you can do when you see the doctors is to write the questions down you want to ask and write down what you are told, that way you will not forget what you are told.

Good luck and keep us posted. We are always here for you 24/7. You are not alone here.


Link to comment
Share on other sites

  • 2 weeks later...

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...

Important Information

By using this site, you agree to our Terms of Use.