I have had many moments of resentment, bitterness, hopelessness, anger, negativity. When I mentioned this to Dr. S., his response was to offer to prescribe me antidepressants. It's such a medical response — more pills. "There's no reason you shouldn't be as happy as you can be," Dr. S. said in his always-calm voice, and I had to say, "Are you kidding? Can't you understand why a person in my situation right now might not be happy?" He just repeated the offer of antidepressants. I'd rather not go there for now. But I do think some counseling might be helpful. (Edited to explain: I am not opposed to antidepressants when they are the most appropriate treatment for depression, such as when it's clear there is a brain chemistry imbalance; but first I'd like to explore the possibility that my current frame of mind is situational, based on specific circumstances that I might be able to work through in therapy.)
My right lung is not working very well, after what it went through at the hospital, and my breath is really shallow and fast. I get winded at the slightest activity — coughing hard, walking across a room, turning over in bed. The right side of my back aches so much that I have trouble falling asleep. I have a nagging, persistent cough that is triggered just by my breathing and sometimes takes the breath out of me. These breathing problems seem to be getting worse, but I'm scared to call the doctor about them because I'm afraid I'll have to go back to the hospital. Even if that's for the best.
My hemoglobin level is borderline anemic, which may be one reason I'm so tired and lightheaded all the time.
I have a PET and CT scan on Monday, and while it would be officially great to learn that the last round of chemo worked, part of me secretly hopes it shows it didn't work because then I won't have to do another round of it. It was so hard, so toxic. I am still not over it, and it was three weeks ago. I don't have much of an appetite, and certain foods just don't appeal to me anymore. The next round is scheduled for next week, but I don't want to do it before Christmas. I think Dr. S. will let me postpone it. But ...
I'm hitting a wall in general when it comes to chemo. I just don't know how much more I can take. I am not a person who associates chemo with positive, tumor-killing thoughts. I saw it described in a recent newspaper article as "the scorched earth policy," and that rings true for me. I've had seven rounds of poison, and so far, it's only had minimal success. Stopping growth (or shrinking it, in one case) for a round or two but ultimately letting more new tumors slip through — tumors that are resistant to that particular form of chemo, so on with the next cocktail.
If this round is found not to have worked, the next option is Sutent, a pill form of chemo. It's been on the market for about two years, originally approved after showing success with gastro-intestinal cancers. I don't know how much success it's had with sarcomas. Meanwhile, it sounds pretty toxic. Can I handle it?
I have had moments when I just want to stop all treatment and lie down and let nature take its course.
And of course, that makes me feel like a bad mother, a bad wife. Who would willingly give up on her family like that?
But then I watch a silly-sweet movie like The Holiday, where Jude Law is a widower with two young girls, and he finds love with Cameron Diaz after thinking he'll never find love again, and it gives me this naive hope that maybe things will work out without me, that maybe I don't need to be so resistant to dying, if that's what the cards hold for me.
And I think about Matt Logelin, a flesh-and-blood widower, not some movie character, who is suffering so greatly but also surviving and, in some ways, perhaps even flourishing nearly nine months after his wife died, the day after giving birth to their daughter Madeline.
So, is it OK to give myself permission to die? Or should I keep on letting chemo drugs weaken me and make me miserable — but maybe buy some more time, maybe (though I'm doubting the odds) work a miracle? Or should I find some middle ground and take a break for a while with the intention of starting chemo again later? It's a question I really struggle with.
• • •
But I can't let the title question go without mentioning some of the things that bring me light.
Unexpected gifts, letters and cards from friends. And visits.
Hot baths, now entirely unencumbered.
I'm done with my antibiotics, and the infection seems to be gone.
My hair is still coming in. It's more than an inch long now! I actually washed it yesterday!
Books like Kitchen Table Wisdom by Rachel Naomi Remen and When Things Fall Apart by Pema Chodron, which help me delve into my suffering and negativity without judgment.
People in the medical community who actually show a human side, who look at me in the eyes and ask me how I'm doing — like they really mean it. And don't offer pills to address every concern.
A woman who comes over a couple of evenings a week to help out (play) with the boys and offer moral support, which enables Steve and me to do other errands around the house. She started out as a stranger and now is a friend, almost a surrogate grandmother to the boys. She brings cookie dough for me to make cookies with Daniel. On days when I'm feeling like a bad mother, she gives me hugs and tells me how sweet and wonderful they are, and how much she loves being with them.
My sister-in-law Sue, who takes time out of her busy family life and comes over every Monday to help me with the boys. We pay a nanny for that four days a week; Sue does it from the goodness of her heart. Her day has become so important to us, and the boys love her.
The fact that so many women I know are having babies soon. For some reason, this gives me such a sense of joy. It's a reminder of the full circle of life.
Acupuncture — the compassionate woman who administers it and the spiritual strength it gives me.
Our latest home-improvement project: a new, ultra-quiet bathroom ceiling fan and some new, professionally installed attic insulation to keep our house a bit warmer (done in tandem). Sounds super-sexy, doesn't it?
Small steps toward decorating the house for Christmas, and seeing Daniel's excitement over it.
And of course, the sweetness of the boys, and the incredible love and support of Steve, who is going out of his way to try to understand where I am these days and to give me all the space (or hugs and kisses) I need. Sometimes he just looks at me out of the blue, seeing something in me that I'm not seeing, and says, "I love you." I really was blessed with a wonderful family.
Oh — and I've been wearing this hat around in the past few days, so some part of me must be feeling feisty and fightin'. Right?