Working on Healing

I decided not to move up the time on my stationary bike this week. The twenty minutes of riding and twenty minutes of yoga are still exhausting. Last night I fell asleep several times while sitting on the sofa, watching television. I'm really interested in my Yao Ming book, but I'm so tired I haven't been able to read it.

The next visit to Houston is coming up next week. Yay for the end of the girdle. I'm going to have to ask him about the tissue necrosis under my left arm. I'm afraid to do that, because I'm not going to be happy with the answer, no matter what. If it's going to stay that way, I'll be crushed. On the other hand, the prospect of another surgery is daunting. I'm trying to not think about it much. I'll cross that bridge when I come to it, as always. Breast cancer is like that.

I may ask Dr. Kronowitz to help me get some physical therapy for my left shoulder, back, arm and chest. I've been working hard, trying to rehab with yoga. It's definitely working, but it's slow going. I was thinking that formal physical therapy might help me move along a little faster toward regaining strength and range of motion.

Yoga. I can feel scar tissue being stretched everywhere when I practice. I've also been continuing to work on my lymphatic system.

I'm certain that someday I'll be able to just live, as opposed to working on healing all the time.

Getting Back in Shape...Again

This week, twenty minutes on the stationary bike, twenty minutes of yoga. I'm exhausted. I spend part of every evening, sleeping while sitting on the sofa. It reminds me a little of how morphine affected me. One minute, I'm waiting to see Steve Earle on Law and Order, the next thing I know, I've missed 10 minutes of the program.

I'm trying to get back in better condition before my December 6 appointment with Dr. Kronowitz. I want to feel better. I want my doctor to be impressed with my progress. Why? Beats me. He's not even Dr. Ross.

When I do yoga, I can feel all of the scar tissue in my body. There's a lot of it. I can also feel how all of the muscles in my right shoulder, arm, back and chest are shortened and weak. It hurts to stretch them out, but it's nowhere near as painful as the surgeries and radiation that caused it.

Only 15 more days of wearing the girdle 24 hours a day, 7 days a week.

Progress

I'm now up to 15 minutes on the stationary bike and 20 minutes of yoga every night. I continue to have trouble gaining back the weight I lost after surgery. After counting calories for a couple of days, I figured out that I'm simply not eating enough. Breakfast and lunch combined only added up to about 450 calories. I'm trying to eat more.

My next trip to see Dr. Kronowitz is on December 6. After that, the girdle is gone! Two and a half months of wearing a girdle 24 hours a day, seven days a week has been relentlessly uncomfortable. I guess I'll find out then whether there's any hope for my new girl to look normal. I'm not sure I want to know the answer.

Thank you

This is from my wonderful friend, RubyShooz. Please pass it on to the people who make a difference in your life.

“Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow.”
-Melody Beattie

An Apology, Of Sorts

I just received a comment about my most recent post from a very kind man. He is a member of a support group for survivors of a very rare and (at this time) incurable cancer. He could have been stern with me or angry with me. There are a whole range of unpleasant reactions he and others would have a right to express. I thought I should clarify my position on support groups.

I am asocial. That's the bottom line for me. I was a member of a Survivor's of Suicide support group after my father died. I found it amazingly comforting to sit in a room with 12 other people who knew exactly what it felt like to live through that terrible, terrible event. Every week, we'd all stand up and say our names, the names of our departed loved ones, the date they died, and how they chose to leave us. That was as far as I ever got. I listened to everyone talk and I cried for the two hours it lasted every week. The very last week I went, the facilitator actually asked me to talk about my feelings. I talked, but I never went back.

I also participated in fairly long-term group therapy a couple of times in my life. I think my unwillingness to share my heart or my thoughts with groups of people stem from those experiences. They were not positive.

I understand how important it is for people to reach out to others, to have a stable base of supporters who are living through the same difficulties and traumas that you are. Please know that I don't mean to disparage that need or anyone who finds hope and solace through support groups.

This much I know: We all get through it how ever we can. Whatever crises life sends your way, the important thing is to just get through it. No judgments.

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.