Standing on the Outside

It's been a week today since my last chemo session and this morning is the first morning that I've awakened feeling that today could be a "normal" day.  The chemo is apparently effective at attacking the cancer cells, but the side-effects (nagging pain, numbing fatigue, relentlessly pounding heart) are incredibly efficient at wearing away any sort of psychological façade that I have managed to create.  The façade that says '' you can beat this", "you have to be strong and above all, positive", "you're doing all the right things".  All notions of being who I'd like to be - kind, patient, polite, understanding -- suffer from the abrasion of the pain and tiredness.  I'm left feelling incredibly vulnerable, fragile, lonely and scared.

Although I see that life goes on for those around me -- preparing for a birthday party, a retirement cocktail or a new baby on its way, dealing with a relative who is ill, worrying about problems at work, grieving over the loss of the family pet -- I find it difficult to stay connected.  I feel as if I'm standing on the bank and watching the river of life flow by for others, but somehow I'm only an observer.  I'm in my own world and I have to struggle to remember to ask those friends who call about what's going on for them, struggle to remember that it's not all just about me, struggle to stay in the stream of life.

I have to constantly remind myself that those around me don't know and can't really know what's it's like for me.  They are living the "friend/husband/daughter/son of a cancer victim" role.  For this particular play, I'm the only one who has the starring role.  I must remind myself that everyone around me is doing the best they can.  The reactions of friends and family are incredibly varied -- those that have come out of the blue to be supportive, giving an occasional call, inviting us over for supper, and those that avoid calling at all (for fear of "bothering" me, or just fear alone).  For those that can't be there for me, I must realize that this is part of their story and I don't have the right to judge them.  For those that do step up to be there for me,for those that I can call and be honest about what's going on for me even on a bad day,  I'm incredibly grateful.  I feel  buoyed by their love and support.  

Mr. T and I made a special appointment with the surgeon this week to get some clarification on why she may be hesitating about whether to operate or not.  I told her that I wanted her to be honest and she proceeded to explain that heavy surgery (we're talking 10 hours on the operating table, 4 days post-op in intensive care, and 10 days total of hospitalization) is not always recommended for ovarian cancer that has metastasized outside of the abdominal cavity.  In other words, I would suffer from the negative effects of the surgery and the result would be that I would still have cancer.   Having accepted that, I let her know that it was important for me to get rid of the bulk of the tumors - I want that stuff OUT! - and that I was counting on the "mopping up" phase to take care of the remaining sites all of which are very small (< 1 cm.).   

The mopping up would include more chemo, as well as other approaches, including a customized vaccine developped from my cancer cells removed during the surgery.  The immunologist that we consulted has done this for several of his patients based on protocols used currently in the States for colorectal and lung cancers.  He essentially extracts the signature  proteins of the cancer cells and presents them to my immune system.  I think of them as "Wanted, Dead or Alive" posters that the lymphocytes will carry around, allowing them to home in on what's left of the cancer and erradicate it.

By the time we walked out of her office, we both were reassured that she does indeed plan to go through with the surgery, and that providing the cancer cells for the vaccine was absolutely not a problem for her.  This made me feel back on track, that we had an aggressive plan of action, and that I could improve my chances of survival.  

At the same time, I'm faced with the stark reality that despite all of my determination to beat this, all of my efforts to explore possibitilies of treatment, all of my "staying on top of it" psychologically by dealing with my feelings and not stuffing them,  all of this just might not be enough.  We all know that we all have to go sometime, but I have never been personally faced with the possibility that "sometime" for me might not be thirty or forty years down the road.  No wonder that the fear of the "D" word wells up in me from time to time, like a wave of nausea.

Fortunately, one of my most power tools in my get-well box is Charlotte-therapy.  Spending time with her and seeing life from her 5 and 1/2 year old point of view, ties me tightly down to the here and now, to living in the moment.   There are still tons of things that we can do together despite the fact that I'm too tired to run races -- reading her favorite Schtroumphs (Smurf)s stories, watching "big DVDs" (video cassettes), playing pretend games with the stuffed animals.   Yesterday we made peanut butter cookies together, and since she wants to do it all herself and is very reasonable about following instructions, she mixed the batter with the electric mixer with just a little supervision from me.  Of course, I had to negotiate to make sure that there was some batter left to actually put in the oven, but we came to an agreement. 

During the going to bed routine last night, she and I were piled up in the bed with our herbal tea, having just finished "Schtroumphs-Les-Bains".  She reached over and pulled my bonnet down over my eyes and giggled, and then very seriously suggested "Mamie Lee, while waiting for your hair to grow back, you could wear a wig".  I told her that I would give it a try.