And then it happened

June 18, 2010

And then yesterday happened . . .

“My husband and I volunteered ourselves to help at a week long youth camp. Initially, I was excited but once I got there and realized I didn’t know anybody and then I was handed my “duties” for the week. My duties were to clean the camp grounds, to pick up and straighten the meeting rooms and to wash down the boys’ dorm restroom twice a day. I flipped out!

The thought of washing boys’ urinals, and not just that, but having to stay up after everyone else went to “lights out” to clean the meeting rooms, brought on the same anxiety that I experienced last year. What has happened to me?

Before cancer I was a type A personality, an organizer/administrator and followed through with all my responsibilities. Now I find if I am unfamiliar with the situation and there is disorganization and a bit of chaos, I cannot roll with it, at all. I am not flexible. Ever since I had my SCT, I need about 8 to 10 hours sleep. Another oddity for me is sometimes I don’t want to be with people, I don’t like idle chatter and I’d rather be alone and quiet.

In prep for the SCT and the aftercare, I learned all about germ control and how to stay away from this and that and keep my environment as germ free as possible. I remain cautious with restaurant salads, sneezing and coughing people, door knobs, shopping cart handles and I wash my hands after being in public places. Because of these new and instilled habits, I think that is why I flipped out at the thought of cleaning the urinals (the camp did not provide rubber gloves for this duty).

Yesterday afternoon I kept wondering what has happened to me? Am I the only weeny after cancer treatment? Why can’t I snap back to my old self? This is very frustrating to me!”

What has happened to me? ~ I wrote the above after coming home from camp. I felt like I had failed. Before cancer, volunteerism and the above assignment would not have bothered me; actually, I would have challenged myself to do the job and do it well.

I was mystified as to why this incident made me feel as if I was slipping backwards into the early days of my counseling with Sally. I am frustrated and I wonder why can’t I do what I used to do?

I posted my above experience and question on a few discussion boards and received responses that helped me realize this is a new me; I need to adjust to this and accept this – I am not the same person BC (before cancer) nor will I ever be.

One responder commented on the fact I mentioned I needed sleep, he called it fatigue. I remember reading about this dead weight fatigue (toward the end of my treatment and after my transplant I felt this fatigue) and how it can stay with you long after treatment. At camp when I received the cleanup schedule and saw that I had to clean after 9:30 p.m., it was as if it was typed in bold and italicized. I kept screaming in my head, “I can’t do this!” and I physically felt like there were electrical shocks across my shoulders. The more I thought about it, the more I wanted to come home!

By writing this experience on the discussion boards and reading their responses, I am encouraged that this is now my normal and it is okay to accept this as normal. Actually, not only accept it but I must carefully plan my activity calendar and wisely think through what I say “yes” to.

One woman wrote back saying, “I also used to be a go-go-go person, now I’m a no-no-no person. My perspective has changed and I realize that if I’m not good to me, I’ll not be good for anyone else. I do as much as I can but know my own limits.”

There are many informative web sites on the internet concerning cancer and post-treatment care. Yesterday morning, I listened to a web cast on the subject of fatigue. On bmtinfonet.org, a bone marrow transplant site, the doctor listed phrases his patients used describing themselves AT (after treatment). “I lack interest in others.” “I am too tired to think clearly.” “I used to have lots of interests.” “I used to socialize frequently.” When I heard him say these phrases I thought, “Yes! That’s how I feel! That’s me!”

What a relief to know I am not the only one – I am not a weeny or a wuss.

What tweaks me and I wonder what is wrong with me, at times I lack interest in others, I don’t like being with them. Another thing is I do not like is going out at night and I do not like being in large social gatherings that I feel I have to socialize in. If I am out after 7 p.m., I cannot think clearly and if I want to say something it is as if I need to kick start my brain so my words come out coherently. And lastly, BC I did have a lot of interests and now I am rather picky in what I do or what I want to participate in.

And most threatening for me are functions or gatherings that are chaotic or appear (or are) disorganized. I cannot handle that at all! Those electrical shocks start in my shoulders and I want to run! If Dale is with me, I find myself leaning very heavily on him for some semblance of control – like get me outta here!

The webcast doctor said I must learn to structure my day; I must acknowledge what I can do and make adjustments accordingly. He said a cognitive behavioral change is “accepting” – “I am tired and I am not the person I used to be.” This is a new reality for me – another forward step called “acceptance.”

Another quote from a woman who responded to my initial question, “What has happened to me?”

“Learn to live within your limitations and don’t try to be the person you were before. Remember in our lives there is BC (before cancer), AD (after diagnosis) and then we have another category AT (after treatment). We reach new normals and the old times are memories.”