More Adjustments

[chloesmom]

Here's something that has really been bothering me lately--

I want life to return to normal, but it never will. This week at work I am in an in-service training session. I have always hated in-services, I would much rather be at my desk doing my work, but that's not what I'm getting at.

One of our sessions was a physical session that I didn't think I needed to put my left side through--besides the thorocotomy on the left side, I also had a breast tumor and lymph nodes removed from that side. End result is an arm I always have to be careful not to traumatize too much or else risk lymphadema. Not to mention that the nerves have all been sliced and diced twice on that side and I've been told they will never feel right again.

Anyway, I had to ask to just be an observer for this session. No one gave me any trouble about it--they know my medical issues, but I DON'T WANT TO HAVE TO DO THAT! I want things to be normal, but I have to re-define normal I guess. It's kind of like when you have to complete new medical history forms at the doctor's office--used to be I would be able to check the "no" boxes all the way down the sheet, including no medications. Now, my history and medications looks like a grocery list.

Again, I feel terrible complaining. After all, I'm glad that I can work and move around and very grateful that I feel well, I'm just kind of melancholy about the days when I only had silly things to worry about.

Just that these kind of things pop up and really hit home with me.

On a brighter note--tonight marks my 11 month anniversary of not smoking. It's also the 11-month anniversary from that phone call that said, You have a mass on your lung." But at least that marked the first step in the road to getting that thing out of there.

No more whining--I just needed to vent a little.

[gail]

Go right on, my dear and vent---this is the place!

What I find so interesting on this board is to see where we are all in the processing of this little bugger. I remember having the same thoughts as you, and sometimes still do, but one day, as I was feeling bad about it, I flashed on the fact that being able to fill out the form is a good thing, because I'm still here.

And yes, this is our "new normal", as I heard a 9/11 widow say.

gail

[Debi]

Congratulations on the 11 months of no smoking!!

I remember sitting in a new dentist's office 3 months after my surgery and actually having to check cancer on the form I was filling out. Screwed me up for the day- it hit me like a sledgehammer for the first time that things weren't going to be the same..

I also know what you are saying about the job...I just got a note from my doctor that I can't work extended shifts during peak periods. I have to work anywhere up to 19 days straight, 10 to 12 hours a day during those periods and my immune system seems to wear down. The last 2 peak periods, I ended up with bronchitis directly afterward. It was extremely difficult for me to ask my doctor for the note... it is hard for me to admit that I am different, to both myself and others. My boss had told me to get it the first holiday period, just in case, and I was stubborn and wouldnt because I didnt want to single myself out or show any "weakness".

Another thing I noticed, is now that I have days where I may not remember non stop that I have had cancer ...it kind of slaps me harder when I do remember and then I have to adjust all over again.......

[chloesmom]

Gail and okdebi,

Thanks for your kind words of support. You know, it helps just to be told that others have gone before you (Gail) and are right there with you (okdebi) who are having the same kind of feelings.

I hate to complain because like you two, I am also carrying on a pretty normal life. I feel good, work, take care of a home, am active, etc. But at the same time, it is so weird sometimes to think about what we have faced--and how we ever got out on the other side.....makes you scared when it occurs to you during the day or even worse, in the middle of the night when you wake up and can't go back to sleep....thank you for listening.

I'm so grateful for the internet and this message board. Otherwise I really wouldn't know anyone like me and that would feel lonely.

[Geri]

Have been where you are, when I found myself also whining about everyday stuff that I couldn't do - my lack of hair, dry skin, extra weight, some physical restrictions......the list goes on - I realized that I must be getting better. I was no longer focusing on licking the cancer, just whining about things that I would have whined about at any other time in my life! When I thought about it that way things were just a little more 'normal'

[chloesmom]

Geri:

Good point--that has occurred to me to recently. If I'm back to whining about the things I used to get all bent out of shape over, such as lack of ability to lose weight, some of the yahoos at work that I have to put up with, bad hair days, I must be getting back to normal.

It's just that this week hit me hard because I knew that this in-service would require me to speak up and ask for special treatment because I am not in the physical shape I used to be. And you know what, not that anything would happen, I just didn't want to risk lymphadema and possibly some chest issues all over a training exercise.

It's over now and things should be back to 'normal' next week.

[brm1949]

I can relate with all of you. Before cancer I was a pretty active guy and never really thought to much about these kind of things. Then the DX came and it hit like a ton of bricks and life as I use to know it ended. My family and friends treat me differently and it's as though I'm on another planet. Even though it's been 2 years and surgery and chemo and rad, I still feel out of touch with the so called normal world. But I have learned to live in the moment to the best of my ability. I have a deep faith in God but this disease has even shaken that. But as time goes on, I find my faith in God has only increased. I hate this disease.

[Gyongy]

I am so relieved that I am not alone in feeling such sorrow for the loss of my "real" (pre cancer) life. My sadness is at times so overwhelming that all I do is cry. My loss of everything I loved in life, especially my health and the life we led has been devastating.

Due to some really strange events my husband and I have lost everything: Last summer we sprayed in the house with insecticides to get rid of wood ants. The stuff got into the floor where is stayed volatile and over several months poisoned me to the point where I developed such chemical sensitivity that I could no longer stay in the house. Everything we had, which could not be washed, was contaminated for me so that we had to get rid of it: books, paintings, pictures, furniture, all electronics, just about everything. We moved into a rented house, with just a few things we salvaged from the house. That is when I was diagnosed with NSCC SCC. We got into the car with whatever we could put in and went to MD Anderson. Three months ago I had the lower right lobe removed. Since my release from the hospital I have been back 2 more times for different things (fluid build up, pneumonia) all the while going from the hospital to a hotel. Finally on the first of May we rented a house in Austin, TX since I have lost too much of my breathing capacity to return to Santa Fe where we lived. I still have pain in the surgical area and have lost most of my muscular strength due to long period of inactivity. We are trying to furnish this place, build up some semblance of a home for us. I miss my old home, my friends, my old life, the sense of piece and comfort I took so much for granted. Now I live in fear, just waiting for the next shoe to drop.

My husband, who for all this time since we left our home has been cooped up with me mostly in some small hotel room, has been incredibly wonderful and supportive. I should be grateful I have him and have done OK so far but I only see the devastating loss of all we have had: my dream house, all my treasured possessions that are gone, even the photographs of our life together. I am 60 years old and starting out and I hate it. One of those things, cancer maybe, is hard enough to take; the chemical sensitivity to all petrochemical products makes me feel like a freak and not part of humanity. Just as an example: when we moved into this house we had to buy a bed. No one thinks about it unless they have to but new beds off-gas for a few months very powerful chemical smells which bother me all the time. Yet, a bed we needed to have. So we drag the bed outside every morning to air out in the sun and drag it in to sleep on. Well, I don’t drag it any more since I pulled something inside and have been hurting ever since. LOL

Sorry, I know I should not be wining so much but I had to tell it to someone. I hate it that I can’t live my retirement years with some sense of comfort and happiness. I don’t know how to even imagine being happy again.

Thanks for letting me rant.

Gyongy