Just When You Think Everything is Fine...Well, YoiuKnow

"Here is the world. Beautiful and terrible things will happen. Don't be afraid.” ~
― Frederick Buechner, Beyond Words: Daily Readings in the ABC's of Faith

Six months ago, it somehow escaped my attention that another mass was noted in the remaining breast.  Imagine my surprise when I was summoned for another CT scan a couple of months ago (at the six month point).  I was in such denial (ahhh...love denial) I wasn't even anxious about it; I thought they'd accidentally scheduled the annual exam a little early.  Let me reiterate:  I love denial.  So liberating.

Cutting to the chase, it looks like everything is fine.  We'll have another look-see in September.  My official position is that I'm not afraid until they are.

But then, there's the massive radiation to my left side.  That scares me a little.

I guess the blog is up and running again.  To any of you who are there, thanks for visiting and stay tuned for more.  

So Long to a Fellow Survivor

Tyler was my age. Ten years ago, he was diagnosed with a rare form of throat cancer with a high mortality rate. (He never smoked.) Tyler went to my friends at M.D. Anderson, where he received radiation treatment, followed by surgery to remove the tumor. He went about the business of surviving.

Three years ago, after an argument, his wife killed herself. He had spent the night at a hotel and came home the next morning to find her sleeping. He noticed that her head was lying at an odd angle on the pillow, but thought nothing of it. Tyler went out to run some errands and came back to find his wife had shot herself. When the autopsy was completed, he was told that she apparently took an overdose of medication and, waking to find that her suicide attempt was unsuccessful, she pulled a gun out of the bedside table and shot herself.

Tyler struggled to regain his equilibrium the past three years. I'm not sure that he ever really did, though. As a suicide survivor, I know that road is long and treacherous. I can't imagine how it's possible to recover when your wife shoots herself, in your bed, after an argument. He went on and tried to find a new life.

Every year since his surgery, Tyler had to go back to M.D. Anderson to have scar tissue from the surgery removed from his throat. He had his last surgery about three months ago. He left a message on our machine a couple of weeks ago, wanting to hear how I've been doing. It was something Tyler did regularly.

His message sounded almost like he was on a respirator. I could hear his labored breathing in between phrases. There's only so much you can do with scars. Ultimately, removal of scar tissue only creates more scar tissue. For Tyler, the scars finally made it impossible for him to breathe and he died in his sleep.

Here's to you, Tyler, to your long struggle to survive. Here's to your will to endure your wife's death. We walked the same paths, but now you've left me far behind. Would you have guessed that I'd be crying for you? I am, just as I'm celebrating your courage and tenacity.

So long, Tyler. We'll all see each other soon.

Stage 3, Step 3

When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful. ~Barbara Bloom (I'm not sure this quote goes with this post, but I like it anyway.)

It dawned on me last night that I was diagnosed with Stage 3 breast cancer. Oh shit...how did I not know that? I reviewed what I know about breast cancer staging, just in case I'd jumped to a hasty conclusion. No. Stage 3. Then I called my mom this morning and told her I'd just realized I have Stage 3 cancer.

"Well, they told you that at the time," she said. "I don't think you could handle it then. There were too many things happening too fast to deal with it all."

Well, hell. I wish someone had mentioned it more than once. Seems a little silly to be terrified now. It actually seems kind of funny. Or maybe that's just the hysteria talking. Epiphanies. What a riot!

Today, I have step 3 of the new plan. I thought of it last night in between panic attacks.

What do I know about suffering?

I know that, no matter how good things are, we are never satisfied. We're filled with a restless hunger. Have the perfect job? If only we liked our kitchen more. Have the kitchen redecorated? If only the sun would come out. Sun shining? If only we were having a better hair day.... It's endless, this longing.

We want to push change away, halt time in its tracks, because with change comes loss. We don't like loss; it never feels good.

We yearn so much for feeling good (in all its possible manifestations) that we are unable to accept each changing moment as it comes. That is the solution to my suffering. I have to relearn it every so often. I thought I'd gotten it down during chemo, but no.

I am mourning the loss of my breast. The breast is gone and the new one is scarred and hardened in places. I was diagnosed with Stage 3 breast cancer and now I'm afraid. Things are as they are.

I can let go and experience these truths without judgment, holding close to me in loving embrace the sorrow, anger and fear. I can stop rejecting the breast and love it. I can stop rejecting the body and love it. It is my oldest friend, it will be with me until I die. I can feel some empathy for this skin that carries me around in it.

I can remember that, as much as I don't like this moment, it's perfect, nonetheless.

Searching for a New Plan

There will be no more surgeries (aside from nipple reconstruction on the new breast). That means the hard, necrotic tissue will remain where it is, perhaps for years.

Dr. Kronowitz did inject steroids into the chelated areas on the new breast, navel and donor site. That may help with the way the scars look.

I started physical therapy today in hopes of improving strength and range of motion in my left arm.

There's not much else for me to say right now. I'm coming up with a new plan to come to terms with this new, permanent reality.

Being Upbeat Doesn't Keep You Alive

I'm not a joiner. I don't do support groups. Throughout my breast cancer treatment, my primary care provider and my psychiatrist constantly urged me to get into a support group. "It improves your chances of survival," they told me. I read books that said the same thing. It came to seem almost like a judgment, that if I was unwilling to do the required sitting and sharing, I was inviting death to make a house call. My doctors disapproved of my decision and they disapproved of me. It made me angry and it caused me to question my own intuitive understanding of what I needed to do to get through treatment.

I didn't care what anyone said. The thought of sitting around with a group of women, some of whom definitely would not survive the fight, and talking about having breast cancer made me just want to go ahead and die. I decided that, if that's what was required of me, I'd have to take my chances. No support groups.

If you asked the people who saw me every day, they would tell you that I always maintained a positive attitude throughout my treatment. They're right, but they're also wrong. Mostly I was focused on how much everything hurt. I was primarily aware of how big the pain was. It was as if I'd become a 600 pound lump of agony. I was open to distraction, though. As a matter of fact, I sought out distraction wherever I could find it and whenever I had the energy to use it. When people told jokes, I laughed. When they looked at me and started crying, I comforted them. Then I made a joke, so they could be distracted from my pain. I don't think they knew the diversion was less for them than for me.

I was not upbeat all of the time, not even most of the time. I'm not even sure what "maintaining a positive attitude" really means in that context. I was relatively confident that I wasn't getting ready to die any time soon. I was certain that I was going to be required to endure whatever the treatment regimen dictated. Is that the same as being upbeat? I'm not so sure.

Today, I read an article from WebMD that made me feel better about being asocial and stoic. It turns out that the commandments "Thou shalt be positive or die" and "Thou shalt participate in support groups or die" are wrong. Here's the proof:

Attitude Doesn't Affect Cancer Survival

Study Shows Positive Thinking by Patient Has No Impact on Surviving Cancer

By Salynn Boyles
WebMD Medical News

Reviewed by Louise Chang, MD

Oct. 22, 2007 -- Having a positive attitude may help cancer patients deal with their disease, but it doesn't directly affect survival, according to one of the largest and most rigorously designed investigations ever to examine the issue.

The study included more than 1,000 people treated for head and neck cancer; the emotional state of patients was found to have no influence on survival.

The findings add to the growing evidence showing no scientific basis for the popular notion that an upbeat attitude is critical for "beating" cancer, says University of Pennsylvania School of Medicine behavioral scientist James C. Coyne, PhD, who led the study team.

"I wish it were true that cancer survival was influenced by the patient's emotional state," he tells WebMD. "But given that it is not, I think we should stop blaming the patient."

'The Tyranny of Positive Thinking'

Jimmie Holland, MD, agrees. The Memorial Sloan-Kettering Cancer Center psychiatrist is a longtime critic of the "mind over cancer" proponents who tell patients they must stay positive to survive their disease.

In her book The Human Side of Cancer, Living with Hope, Coping with Uncertainty, Holland coined the term "the tyranny of positive thinking" to describe the belief.

"The idea that we can control illness and death with our minds appeals to our deepest yearnings, but it just isn't so," she tells WebMD. "It is so sad that cancer patients are made to believe that if they aren't doing well it is somehow their own fault because they aren't positive enough."

Holland does acknowledge the benefits of staying positive during cancer treatment, and she is an advocate of techniques like relaxation, meditation, support groups, and prayer to help patients cope with their disease.

But she says there is no credible evidence that positive thinking alone directly influences tumor growth.

"People really want to believe this, so even very good studies like this one probably won't change public thinking," she says. "But the scientific community is getting the message."

Attitude and Cancer Survival

The newly published study included 1,093 patients with head and neck cancer who completed quality-of-life questionnaires during their treatment.

Coyne says the study group was limited to patients with a single cancer who had similar treatments to better assess the impact of state of mind on survival.

A total of 646 patients died during the study follow-up. Even after accounting for other variables that could affect survival, a patient's emotional state was found to have no bearing on whether or not he or she lived or died.

The study appears in the Dec. 1 issue of the American Cancer Society (ACS) journal Cancer.

In a separate review of other studies published earlier this year, Coyne, University of Pennsylvania colleague Steven Palmer, PhD, and ACS researcher Michael Stefanek, PhD, found insufficient evidence that participation in psychotherapy or cancer support groups plays a role in survival.

In that report, the researchers concluded that the hope that emotional state is a driving factor in cancer outcomes "appears to have been misplaced."

"If cancer patients want psychotherapy or to be in a support group, they should be given the opportunity to do so," they wrote in the journal Psychological Bulletin. "There can be lots of emotional and social benefits. But [patients] should not seek such experiences solely on the expectation that they are extending their lives."

Making Chemo brain Treatment Decisions with a Chemo brain

I woke at 3:30 this morning and never went back to sleep. Little Andy (my big baby Husky) needed to take an emergency bathroom break, so I got up to let him out of his crate and into the back yard. That was the end of sleep for me.

I read yesterday that M.D. Anderson now has some services to address chemo brain. It all sounds tiring and complex. There will be neurological tests. Heaven only knows what that would entail. Since chemotherapy, I'm noticeably more stupid. My therapist, my husband and my mom can't see it, but I know how much more slowly I think. I notice how frequently I can't think of the right word, can't follow logical progressions in my database development, have difficulty concentrating.

My psychiatrist recently suggested (and I just that same day read) that chemo brain may be trauma-induced. The diagnosis, the chemo, the radiation, the uncertainty of a long-term future are, without a doubt, traumatically stressful. After it's over, we're left to process all of it emotionally and try to cobble together a new life.

I'm mulling over my options. I don't know if I'm willing, at this point, to endure what will be required of me to figure out how (or if) we can fix it. Maybe I simply need to wait a while, continue to work through the past two years and hope things improve.

I'll be in Houston on December 6 and, if I were going to pursue treatment of some kind, it would be great if I could work that in on the same trip. On the other hand, I don't know how likely it would be that I could combine the two. They're busy, you know.

On five hours of sleep, it's hard to come up with the right answer. I think I'm going to allow my intuitive brain to work on this without my intellect getting involved. The right brain is always right. I'm willing to wait while it decides for me.