Looking Back (words fail me)

DrMary

My husband mentioned that he'd just read my first post on our CaringBridge blog. This inspired me to go back and read what I'd written over the last month or so.

He came by later and found me in tears. He assumed that someone on CAN had died. No, I told him, I'm just reading what we went through a few weeks ago. How did we do it?

I've often referred to what we go through (both as cancer patients and as caregivers) as "the heart of darkness" but I apparently was blocking out a lot of that horror. I relived much of the pain when I read my blogs and am so glad I did write every day (and sometimes several times a day) as I would not remember that now.

I now understand why our caseworker was talking about PTSD. Not only have we walked through the valley of the shadow of death, but we are now being reinserted to "normal" life - I go back to work in 5 days and he is starting back part-time on Monday. We have to adjust from every hour and every decision having an effect on his long-term health to. . . trivial stuff, like memos and grades and such. I feel like the horse that wants to run back into the burning barn - my life has no structure anymore and I'm not even sure I can bring myself to care about anything less trivial than life or death decisions.

My view of life has gone through so many changes, I can't believe I didn't sprain my brain or something.

I just read what I wrote and I still feel the same way - words fail me. Fortunately, time goes on, even if I can not describe it. He gets better, and I get better. We both get older. We have no idea how much longer we will get older, but we are not thinking about that right now.

How can life be so good now when life was so bad then? Again, words fail me.

luz del lago

I feel your pain, your joy, your confusion
Our dear friends just left after a visit that was too long in coming. They have been with us through this journey. They have cried with us, celebrated with us when results were good, prayed with and for us now that we really don't know were we are. All morning we prepared and couldn't wait for them to arrive. Last night, after 2 weeks of my hubby feeling good and energetic, he began the "downward spiral" as we call it. Sometimes I think folks don't believe me when they ask and I tell them that he is doing fine, or when I tell them that he is really down!
The oddest thing is that after chemo he appears to be feeling fine and continues to until a few days before the next chemo. His labs go along with the expected downs and come up at the right time, but his demeanor and energy go the opposite!
I am not where you are, but I understand the "words fail me" feeling. I look into his eyes and try to figure out what is happening, if he will even look my way. It's like the man of yesterday goes away. The thing that breaks my heart is that little by little, I'm beginning to get used to this new man in my house, and I don't know who he is, or how to be around him.
I began this day feeling as things were good and somewhat the way they used to be, preparing for our friend's visit. Now, tonight, it is all different. The man I don't really know is sleeping on the couch. And I'm sitting here posting on your thread, worrying if he's getting ill, if his levels are bad, if the cancer is getting to him, if he will be able to get chemo next week, what will Monday's CT scan show...
You are right, I don't know what I would do if we didn't have this or that appointment. For 6 months this has been my life. I almost can't remember what it was like before his DX. I pray that one day we will get the chance to go there again.
Go easy, go slow. Don't require too much from yourselves. One thing you have learned in this process, take one day at a time. It still holds true.Your husband will get better and so will you.
Best wishes,
Lucy

Pennymac02

Need to know
Its a good thing that God keeps me on a "need to know" basis, or I'd be totally nuts. I have focused on just doing the next right thing for so long, I have no concept of a bigger picture, no concept of what that normal will feel like, if and when we return to it. I too have re-read by caringbridge stuff I've blogged and I'm glad I've been posting regularly, because a lot of the stuff thats happened, I've forgotten already,(possibly selective memory LOL). Plus, if I knew exactly what I was facing in the weeks coming up I'd be even more squirrly than I already am.

Knowing that your life is slowly but surely returning to normal, Mary, that things CAN get better, is really giving me some hope. There may be a light at the end of this long dark tunnel for me--especially since you've shared that theres a light at the end of yours. Thanks for the inspiration.
Penny