Archive for August, 2011

posted by Amy on Aug 27

A commenter said, “I too had a childhood scarred by betrayal. How can I deal with the memories? You have mentioned it in your blog and I am hoping for some suggestions.” I’m not qualified to give anyone else advice. All I can do is say how it was for me.

My issue with memories was how to experience the feelings that went with them. To survive, an abused and neglected child has to build up very strong defenses, including denial. She believes her parents when they say they love her, and as a result, memories are stripped of their emotional content. The feelings are there, but they are buried, and they work underground, out of conscious awareness, wreaking all sorts of havoc including dysfunctional relationships, compulsions and addictions. To heal, the adult has to break down those defenses and redo stages of development that were arrested or that proceeded in an unhealthy direction. Human beings have an inborn biological blueprint for developing basic trust, which I believe is the foundation for self-knowledge and self love. Abuse, neglect, abandonment, and violence cause development that varies from the blueprint. To repair the damage, it is necessary to go back and excavate buried feelings.

About eight years ago I experienced a very painful personal loss–a betrayal. With the help of my therapist I realized that the current situation was dredging up unmourned losses from my past. I figured out that I needed to get mad at my father in order to debride the psychic wounds from my past and heal from the new betrayal. But I couldn’t do it. Every time I tried to feel anything but pity for Dad my ego would throw up excuses for him. I kept at it. I wrote letters to him, but they were lifeless, lacking conviction or passion. The very intractability of the issue told me I was on to something big. Then one afternoon I was driving along listening to the radio, and Paul Simon’s “Father and Daughter” came on. When Simon sang, “There will never be a father loves his daughter more than I love you,” it was like a dagger through my heart. My father didn’t love me.  He used me. He abandoned me.  Why didn’t he love me? I started bawling, and couldn’t stop. I couldn’t see through the tears well enough to drive, so I pulled in to a parking lot and kept crying and crying. I was completely undone. That night I wrote the letter to him (who had been dead for over 20 years by then) that needed to be written.

Now I am trying to understand my parents and see the world through their eyes. I think that will be my next big task. I believe in my head that they didn’t know what they were doing, and they didn’t mean to harm us, but I’m not sure I understand what drove them to do what they did. I’m trying to see them as real people, not caricatures, and as damaged people, not deliberately evil ones. I am learning to accept myself, including my faults and shortcomings, without criticism, judgment or blame. That is helping me do the same thing for them. It is also helping me appreciate the assets, gifts and strengths that I got from my parents.

This is not a matter of “cheap forgiveness.” It has been a long process. First I had to feel the feelings, mourn the losses, understand what I missed, quit making excuses for them and, yes, even hate them. The baby rage that was suppressed had to come out. I’m not sure I’m done with that. I may never be all the way finished. But we can move back and forth between levels of healing, and operate at more than one level at a time.

The things that have been most helpful to me are Christian spiritual disciplines, Al-Anon, and therapy. What all these things have in common is they are done with other people and they involve the body, not just the intellect–showing up somewhere different to learn new ways of being, learning from others who know the practices and can teach them, and persisting in the new practices. Even practices that are done in solitude, such as centering prayer, have a communal aspect. They are ways to participate in the Body of Christ, to move into a reality beyond space and time and be with all those faithful people who have gone before. The ego retains control and blocks change  by maintaining an illusion of self-sufficiency, and a belief that understanding a problem behavior is all that is required to change it.  We need other people to help us get past that illusion and break through those blocks. We also need lots and lots of time.

Seeing my kids go through their stages of development helped me get in touch with my own feelings. I remember a time when my daughter was a toddler. She was so little, sweet, innocent, beautiful and precious. I loved her so much, and I was so in awe of the incredible gift from God that she was.  The thought of raising a hand to her filled me with horror. It was only then that the magnitude of what happened to me really began to sink in.

While I was going through life assuming that no one was trustworthy and everyone would eventually hurt me I did not have the strength to face the truth about myself and my past. I had to begin learning to trust the right people and protect myself from untrustworthy ones. I slowly began to notice that not everyone is untrustworthy. In romantic relationships I was in a repetition compulsion of trying to get men who were not capable of loving anyone to love me. I was trying to redo my childhood. But then I looked around and saw other people who had stuck by me and been true to me–friends I’d known for many years, family members who had always been kind and supportive. I learned to judge people by what they did, not what they said. I started noticing the differences between how I acted with friends, colleagues and clients and how I acted in love relationships. I began closing the gap between those two different Amys. The “me” who had put herself through school and who worked hard as a lawyer advocating for other people began sticking up for the “me” who was afraid to ask for what she wanted and needed.

As time went on, the will to heal and be whole became stronger than the desire to protect myself from pain. I learned to say no, and to tolerate “no” from others. I learned to risk disapproval and threats. I began to want to be cherished for my true self, and to realize that in order for that to happen I had to really be myself. I had to be honest and risk being rejected for that. That caused dissonance with the self I had been pretending to be, and it was painful, but I persevered. (I was, in fact, rejected.) As I learned that I could be hurt and survive, it became possible to revisit childhood events. Painful memories did not have to be shut out or explained away. I knew God would be with me no matter what happened, and that I was capable of facing the truth. I didn’t have to run away or deny it.

 

 

posted by Amy on Aug 27

I know a fair number of people read my blog, because they tell me they do. It makes me feel connected to a community of friends, colleagues, loved ones and well-wishers.  I cannot emphasize enough how important that is to me.  I can’t imagine trying to tough this out all by myself. I also love getting cards and letters. Keep it up!

I’ll have my last Abraxane on Monday, or, at least, the last one for now. Treating Stage IV breast cancer is a game of “whack-a-mole.”  Cancer keeps evolving, learning to outsmart the drugs. In that respect I’m lucky, because I’m naïve on all chemotherapy. I failed on Taxol, but so far I’m tolerating its close cousin Abraxane, and so far it seems to be working. There are a number of other drugs that can be tried if/when this quits working. And research is ongoing, with some interesting new developments on the horizon: a drug that uses Herceptin to find the cancer and delivers a cytotoxin directly to the cancer cells (rather than indiscriminately killing all fast-growing cells in the body), a vaccine, and a drug that targets another protein found in both breast cancer and melanoma.

A tiny percentage of people with Stage IV go into remission permanently. It’s such a tiny percentage that the cancer is nevertheless considered incurable. More than three fourths of people with it are dead within five years. Management consists of periodic monitoring, and then dealing with what comes up. Breast cancer can metastasize to any part of the body, though bones, lungs and liver (in that order) are most common. My bones are clear, my lungs had some suspicious lesions on them but were not biopsied, and my liver had two small cancerous lesions on it as of April 29. The scariest site is the brain. Most of the drugs don’t cross the blood-brain barrier, so the cancer can “hide out” in the brain. Once it starts in the brain, it rarely gets eradicated.

Some now say that advanced breast cancer has become more like a chronic illness, but I think the analogy is of limited usefulness. Type II diabetes is my idea of a chronic illness. It’s incurable, but if you lose weight, exercise, and take medicine you can control it or even reverse it and live a normal lifespan. Some people, in fact, get such good results from lifestyle changes that they don’t need any medication. Breast cancer is much more of a crapshoot. The drugs only help some people, and only for awhile. Lifestyle is no doubt important, but it is never going to be enough.

Being in this situation is quite challenging. I spend much more time than ever before living in the moment and practicing gratitude for all the blessings that I have. I am carrying on with my plans for an M.Div., Ph.D., and ordination, but it could all be moot. I think about that sometimes, and try to decide how I’d be spending my time if I knew for sure I only had a year or two more to live. I am a scholar at heart, though, so I think this IS what I would be doing.

I have gained about 10 pounds since this all started. I was overweight already, so that’s pretty distressing. I can still squeeze into most of my clothes, but with lots of bulges. I can’t go on like this. Now that I get weighed every week it’s harder for me to kid myself about my size. I want to lose 30 pounds. It’s not vanity. Excess weight is a cancer risk factor. I also have slightly elevated cholesterol, and losing weight would help with that.

I don’t really have any obviously bad eating habits, though there must be some energy imbalance or I wouldn’t be in this situation.  I don’t drink sweetened drinks or eat fried foods. I’ve been avoiding white flour, white sugar, processed meat, and other kinds of junk food for decades. I don’t even drink juice. In the past I’ve had some success with just getting used to being a little hungry all the time—eat enough to be nourished but not enough to be full. I’ve been trying that strategy lately.

Monday I’ll have a torso CT scan, and Wednesday I’ll go in and talk to my oncologist about the results. If you’re into visualization, then see for me now that the cancer has become undetectable. Of course if the news is not that good, I’ll deal with it. What choice do I have? Stay tuned.

posted by Amy on Aug 17

Last Thursday I handed in the final paper for my second incomplete spring semester class. I finished the draft Wednesday night. The next morning I edited the paper, and I hit the “send” button at about noon. I had done a lot of the research for the paper, but writing it and filling in research gaps took seven or eight days. It was 27 pages long, with 2 1/2 pages of references. It feels good not having that hanging over my head anymore.

Thursday evening I tried, unsuccessfully, to finish a birthday present I was working on for my ex husband, Steve Durfee, who turned 60 on Sunday. Friday I went to Minnesota to visit Steve, his wife, and all our kids. Steve and Beth have a place on Pelican Lake, which is about a three hour drive from the Minneapolis/St. Paul airport. The kids, and our daughter-in-law, came in from Washington State, Washington, D.C., and Denver. After two days of visiting, eating, and playing on the water I headed home early Monday morning. I think a good time was had by all. I was very happy to see all my kids, and I enjoyed visiting with Steve and Beth. I don’t think any of us would have predicted fifteen years ago that someday we would all spend two solid days together and actually enjoy it.

I saw my oncologist today. I have a CT scan and an echocardiogram scheduled for August 29, and an appointment to meet with her August 31 to discuss the results. By then I will have had three more doses of Abraxane. If the scan is clear, then I’ll start getting just Herceptin every three weeks.

Waiting is part of my new reality. I think there will be good news, but I thought that before and I was wrong. It won’t do to get too far ahead of myself. As always, I remember that life can only be lived in the present moment. Right now I feel pretty good. That’s enough.

Here’s what I said in an email to the wonderful people who planned and participated in the healing service on July 29:

Thank you, thank you, thank you for the moving, meaningful, comforting, Spirit-filled healing service last Friday. Thank you especially to Robin, Katie, Karen, Ashley and Allie for your leadership in music, dance, and word.

It means so much to me to know about and feel your love, support and prayers. I am on a frightening, lonely, mysterious journey. Like Frodo in Lord of the Rings, there are some parts of it that only I can do, but I couldn’t do that without loving, loyal companions and champions.

Here, edited somewhat, is what I said to a good friend I’ve known since high school. She has had breast cancer,  and she has been unfailingly helpful, with good, concrete suggestions and welcome encouragement from the very first scary news. One of her best recommendations was to do guided imagery, and she suggested a person with the remarkable name of Belleruth Naparstek:

Thanks so much for your thoughtful and insightful comments. I treasure your friendship, especially now.

At my hospital the groups are “sorted” in various ways. Hester, the woman who runs them, is very good at what she does. She’s an excellent group leader, with all the skills and personality traits I’d expect in someone who has that job. She’s very thoughtful and empathetic, and very smart. She is married to an oncologist, and she herself has had two primary breast cancers. When someone asked her if she’s cancer-free now she said, “As far as I know.”

Hester put me in the Stage IV group, which is appropriate, but I’m also newly diagnosed, and everything’s a big adjustment for me. The first meeting I went to was a huge shock. Several members had recently had major setbacks, and there were tales of near-death experiences. I wasn’t prepared for that. Hester checked in with me to ask how I was handling it. The other women also had some sensitivity to that. And, really, the fact that they lived to tell the tale ended up being a source of hope and comfort for me. There are a couple of women in the group who I seem to have a lot in common with, and I’d like to know them better. They’re both away for the rest of the summer, but maybe in September I can get together with them one on one. I am not sure about whether the group is right for me. It’s kind of like any other group of strangers with only one thing in common.

I think there’s a way for me to take a medical leave from school but still qualify for the health insurance. The trouble is I also need student funding (scholarship and loans) to live on (and to pay the health insurance premium). But I think I’ll be able to go to school. I agree, though, it’s so wrong to have health care be tied to one’s status. This country should be able to do better. We elected a guy who said he’d fix it, but he traded away almost everything to the insurance companies before the discussion even started. Maybe he thought he had to do that, to avoid the problem the Clintons ran into.

I don’t think I’m under a lot of pressure to be cheerful and upbeat, though I agree with the commenters who say that our culture seems to expect that. It certainly rewards it. I realize that not everyone needs to know the whole story, and not everyone wants to know how I really feel. But I think there are people I can be honest with.

My childhood prepared me to be matter-of-fact about betrayal, so having my body betray me is less of a shock to me than it might be to someone who had a kinder, gentler upbringing. I’m not saying it’s an advantage. I might be stuffing how I really feel, but I don’t think so. I like the Belleruth affirmations that validate unhelpful or unwanted feelings and suggest “sending them out with the breath in the interest of my own well-being.” I think that gives me permission to be honest with myself, and gives me a way to move on.

And to a young Palmer classmate who is one of my Facebook friends:

I’m actually feeling a little sicker now than before. I’m pretty sure it’s the chemo. The new drug that I’m on is given in cycles of three weeks on, one week off. It seems to have a cumulative effect, so I’m grateful to be in the “off” week now. It’s really no big deal, and it’s manageable with the prescriptions and over-the-counter medicines that I have. Considering the alternative, I have nothing to complain about.

I haven’t actually worn the wig anywhere yet. Yesterday I decided to try blowing my hair dry. I’ve been avoiding the dryer for fear of causing even more hair loss. But with some mousse and a round brush I was able to get a pretty decent “female comb-over” effect without causing any large clumps of hair to come out. (I’ve always had thick hair. It’s actually kind of amazing how much more manageable thin hair can be.) I was going to wear the wig if that strategy failed. The wig I got has a special, very open cap that might make it unsuitable if I were completely bald, but I think it will be fairly comfortable when I do decide to wear it. Most of the time I will probably just wear scarves, hats, or skull caps, especially when chemo ends and the new, fuzzy hair starts growing in.

Speaking of the wig, I wore it Friday on the trip it to Minnesota, but never put it back on again the whole weekend. My daughter-in-law said she didn’t notice it was a wig. She also said lots of people who aren’t getting chemo have thin hair. Mine continues to fall out. I think I’ve had my last public appearance with what’s left of my own hair.

I picked up the new, expensive wig that I ordered on August 1, and I can tell why it costs so much more. It has some fake scalp on the top, so the hair can be parted and look natural. It also has a little plastic section in front to keep it from sliding off a bald pate. The hair isn’t all one color, but has subtle shading like natural hair, or like a good salon coloring job. It’s shoulder length, with bangs. I don’t think anyone will recognize me when I wear it, which might be kind of fun. I also have to figure out how to keep the wisps of gray hair from poking out from under the cap. Gel, maybe. Or shave my head.

 

posted by Amy on Aug 2

The usual protocol for Abraxane is three weeks on, one week off. Yesterday I got my third Abraxane infusion. Next Monday I’ll get only Herceptin, which is not “chemo.” I won’t need to have a blood test first, so I won’t have to be there early.  I’ll just go in at 8:00, sit in the chair for about a half hour, and walk away. That will be wonderful.

Apparently I’ll have at least one more cycle on Abraxane. Yesterday Patty, my oncology nurse, handed me a schedule of appointments through Sept. 6. I will see my oncologist on August 17. When I saw her on July 18 she asked how I was doing. I said, “Surprisingly well.” She asked why it was surprising. I said, “Because I have metastatic breast cancer and I’ve been getting chemotherapy all summer.” She said, “Well, I expected you to be resilient,” and smiled.

I’m tolerating the Abraxane well. I am SO happy to be off Decadron! My weight was back down to the level of three weeks ago, which made me happy. Today the one reaction I had the last two Tuesdays was averted by taking an over-the-counter medication preemptively last night, so I have no complaints.

This morning all my visitors went home. Lily and Colin took a bus to Boston last Wednesday night, arriving Thursday morning. Efe flew in late Thursday night. We had a lot of fun. We saw two movies (the new Harry Potter movie, plus Cowboys & Aliens), went to the beach, cooked and ate some great meals, and did a lot of talking and catching up. Yesterday my guests helped me shop for a good wig. We decided that since I have one with grey hair that looks a lot like my current style, this one could be longer, and could be close to my former hair color, with no grey. It has been ordered. (I really don’t have much of my own hair left. I have to wear a hat when I’m outside to keep my scalp from burning.)

Efe is flying standby back to Denver, and as of this writing she’s still stuck at Logan. I think it has gotten harder to fly standby than it used to be.

Friday evening the Boston University School of Theology held a “Service of Healing and Reconciliation” for me, and for anyone else feeling a need for healing or wholeness. Efe, Colin and Lily attended, which made me really happy. There was even someone from my Philly church, which was a nice surprise. (The pastor and his wife had planned to come, but were unable to make it.) The service was moving and meaningful. Just the fact that so many people participated in planning it and attending it was very touching. Even people who couldn’t be there were part of the planning, and pledged to be in prayer with us from afar. The service included anointing with oil, and laying on of hands. I feel fortunate to be part of such a close, caring community.

I’m having more interesting interactions with my online support group. Awhile ago I had posted an inquiry about the recommendation in the cancer care literature to drink two to three quarts of non-caffeinated beverages a day. I tried to do that, and it was causing acid reflux and far too many trips to the bathroom. Today I found a Scientific American article about water consumption that my brother posted on Facebook, so I replied to my own post at the support group site by putting up a link to the article. The article says that there’s no evidence that everyone needs to drink 8 glasses of water a day. It also says it’s not true that people can be dehydrated without knowing it, or that there is widespread dehydration, or that you can be thirsty but think you’re actually hungry instead. Humans do need a fair amount of water, but we can get it from food, coffee, etc.  Factors that influence the amount will vary according to your level of activity, how much you’re sweating, how much moisture is in your food, and so on. Unless you have some disease that necessitates forcing fluids, it’s safe to let thirst be your guide to how much you need to drink. I thought the forum members might like to know this.

One of the responders proceeded to explain that you’ll get dehydrated unless you force fluids and you can’t use thirst as a guide. Also her chemo nurse told her chemo would produce lots of toxins that stress the liver and kidneys and have to be flushed out. She said she hates water too, but we just have to do it.

It seems to me that if chemo put extra stress on my liver and kidneys they would monitor for that, but they don’t. (It’s known to suppress immune function, and they diligently monitor for that. If your white cell, red cell or platelet counts get too low you don’t get your chemo.) Or my doctor would tell me to drink extra water, but she didn’t. Or the drugs would carry a warning about that, but they don’t. I think I’ll stick with letting thirst be my guide.

On the same forum, in a discussion about coffee and tea, someone said she has just one cup of coffee a day and then switches to apple cider vinegar and water, because “cancer loves acid.” First of all, I don’t think it’s true that cancer loves acid. Secondly, as between vinegar (aka acetic acid) and coffee I believe the vinegar would have a lower Ph, depending on how much you dilute it.  For that matter, since we have hydrochloric acid in our stomachs, I’m thinking mildly acidic foods and beverages are probably not going to affect intracellular acidity. (I did a quick search on coffee consumption and breast cancer. I found one study that says there’s a slight beneficial effect of drinking coffee for post-menopausal women with breast cancer. I posted that on the forum. No one replied.)

I got the work done and turned in for one of my incomplete classes. Now I have one more paper to write. I’m actually looking forward to doing it. It makes me feel more like myself. I’ve given it a lot of thought, and I’ve done a lot of reading, but I have yet to write any of it down. So I’d better wrap this up and get to work.

 

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