Still struggling

[jaminkw]

I've been off the site for a bit. Am struggling with cancer taking over my life. It seems I know all there is to know about my particular situation right now but feel a little hollow. Don't feel like I have much to give right now.

I recently told my sister that I felt I needed to find some joy in my life. If this journey gets difficult, and I'm told to expect it will, I'm going to need to fight. I've been given a reprieve but have no way of knowing how long it will last. I know somehow that in order to find the energy for the fight if and when it comes, I first have to find the joy.

I fell asleep last night thinking I needed to get up and just do whatever I felt like doing. I've always been a workaholic but the pressure is off now so why don't I stop stressing over all the things I should be doing. I don't feel great tonight but I'm on the site so maybe that's good. I did a few chores around the house and then went out to my shade room. I didn't get to grooming my orchids but I did replant the poor sickly bonsai that should have been repotted a couple of years ago. It looks so happy! I also repotted a plant I did wrong a couple of months ago when I tried plant therapy--I planted it right in the cache pot and immediately afterwards asked what did I do!!! It was supposed to go into a plastic pot so it could be removed and watered. Oh well, I'm wandering.

It felt good to be in my Key West brand of garden. But then I came in and slept for two hours and have wasted time playing in the computer ever since. This is not living. I'm still struggling to find what is living for me. I think it's writing. I've always known that and have been given so much encouragement over the years and still I don't do it. I just don't know--write what? At this age and stage in life, it will have to have meaning. I have to trust I'll find the answer sometime soon because the struggle is making me very sad. I'm in remission and should be feeling very happy.

Judy in Key West

[Flyman35]

((((Judy))))

I don't have anything witty to say. I just hope you find your JOY soon and start LIVING.

Denise

[RandyW]

Judy Living ios repotting the plant today and deciding what to do tomorrow when you get up! Just don't sit around waiting to die! That is not living. Ted Kennedy got diagnosed with terminal brain cancer and with in hours of leaving the hospital was out sailing, going, " Oh well!, got things to do!!!"

Today it is repotting a plant tomorrow painting a picture does not matter do what you want when you want!!!!

Prayers and Hugs!!!!

P.S. Been to the Keys and used to live in West Palm soo.......

[SandraL]

Hey Judy. I think I can relate to how you feel. It is hard to "shake" this thing off and get back to business. Once you have been through what we have it is very hard to do. Even when I thought I was NED and was back at work full time...I could not get it off my mind. And I think that is quite normal quite frankly as one will never live without the fear of it coming back. We somehow have to find the new normal for us and I think that is very hard to do as one can never be the same after this diagnosis. So I guess just one day at a time and maybe we will find out what that is..in remission or still living with it. I wish you well and understand your struggle. Maybe there is an "after cancer" kind of support group that you could join.

Sandra

[recce101]

Judy, change roles for a moment. Put yourself into your previous counseling role and imagine that someone came to you with the situation you just described. What would you tell that person? Would it include things like...

Lighten up on yourself, there's nothing that needs fixing right now that isn't BEING fixed right now on a subconscious level, you've been operating at 120 percent for almost a year and your body and mind need a break, don't try to force a time schedule on the process, when you're ready to plunge in again you'll know and nothing will hold you back...

Aloha,

Ned

[jaminkw]

Thank you all for your generous responses. They got me up long enough to respond to StrahDawg and for that I am grateful. Initially, I was embarrassed to check in. I hate whining especially when it's me doing it! I understood myself better after responding to StrahDawg. Guess that's what it's all about, huh?

Before I posted yesterday, I had gone on cancergrace.net. I read that someone I'd suggested days earlier go to a counselor for a safe place to talk through horrendous family cancer-related situation made an appointment with her therapist on Tuesday. This morning while I was online, I got a phone call telling me that an old colleague (counselor) is in town and wants to stop by and see me today. Did I want to see her? Yeah!!!! Ned, on putting myself in my former shoes, think someone is trying to tell me something!!!

Thanks all, just having you there means everything, Judy in Key West

[CaroleHammett]

Judy:

Thanks so much for posting about a feeling I've also been experiencing, but been unable to articulate: After my dx in 01/07, I focused on treatment and getting done the things I wanted to do before I die, and then, suddenly, it seemed like there was nothing left to do, kind of like my life had gone on hold, or even just that cancer had become my life.

Overall, I've been relatively happy and content (I may be dying, but I'm not dead yet and I've had a full and rewarding life), but some days its hard to stay "up," and even harder to remember that this was also true on some days long before I was dx'd with cancer.

I look back and see this as a journey of shifting thoughts. My first "shift" in attitude/thinking was when I was dx'd and had to decide what course to take (I chose to fight with most aggressive concurrent chemoradiation therapy treatment available).

The second shift was when my treatment was complete and I had "bought" enough time to take a couple of "memory trips," after which I returned home and started the third shift, which was to prepare myself for the day when time started running out. This consisted of selling my house (a beautiful 110-year old Victorian here in old town Boulder, Colorado) and moving into a condo which I remodeled to make "handicapped accessible" (ramps, first floor bedroom and bathroom with shower with seat, level decks for walker, hot tub for warm water therapy, etc.).

Then it was a matter of waiting for Spring when I looked forward to "flowering" the decks (in place of my gardens at the old house), but in the meantime, my cancer began growing and spreading again, beginning a fourth shift in thinking--a shift which I seem to be handling better than my family, unfortunately.

I've not given up. I'm not capable of that. When the Tarceva didn't work as a second line of defense (the goal not being curative, but to stop or slow progression), I began the Alimta, which only has about an eight per cent chance of working (due to my being an ex-smoker with poorly-differentiated squamous cell type NSCLC). There are a couple more chemo treatments out there and I'll probably try those, too, and hopefully, I'll buy some more time, but I don't want to waste the rest of my life buying time while ignoring quality of life, so this fourth shift has become the most delicate exercise in balancing the two so far.

Like you, I was a lifelong workaholic. I did know how to "stop and smell the roses," but now I find I need to work at not filling my life with the unnecessary. I've been "flowering my decks" (planting) for weeks now. Even though I'm a lifelong voracious reader, it's my plants that save me now... the feel of my bare fingers digging in the soil, the bright colors of their blooms, the particular mixture of smells... these all combine to remind me not only that I'm still alive, but that life goes on, and therein--for me--lies the joy.

As I have since the beginning, I still spend a lot of time in research. I still hope that the time I buy will include the discovery of new treatments that will buy me even more time. But right now, it's putting my own thoughts in order, putting my life in perspective, spending time with loved ones--both family and friends--and being at one with nature...these are the things that make up my day, and I can honestly say that they bring me joy in and of themselves.

I don't mean for any of my meanderings above to be "downers" for anyone--they certainly don't bring me down--and in fact, reading words such as yours helps me far more than reading of others' unrealistic expectations.

I don't want to die any more than the next person does. In me, as in most human beings, the will to survive is dominant, but I also don't want to waste the rest of my life either waiting to die or fighting dying when I can be living my life to the fullest instead.

Carole

[jaminkw]

Did a post instead of a pm.