Christmas Eve 2009 Update – Coming Unglued and Other Things

It is Christmas Eve, three weeks since I had my mastectomy, and I am coming unglued. Seriously! The surgeon used glue to hold me together (at least on the outside) and as my wound heals, the glue is starting to peel off. Everything is looking pretty good at the surgical site, as far as I can tell. With the help of family and friends, my recovery has been going very nicely. I’ll meet with my surgeon’s nurse practitioner, Edith, on Monday next week and we’ll see if she agrees.

It seems odd that it’s only been three weeks, because it seems like an eternity ago. I’m not sure why. It seems as if I’ve been this way – one-breasted – for a long time already. But there are some things that are different.

The right side of my chest is different, and not just because of the missing breast. It’s all of the other, associated tissues that they remove in addition to the breast. It leaves you with a rock-hard chest — and not in that good, body-builder sense! There is only bone and skin—not even a fat layer left to provide cushioning. It feels, to me, as if I’m carrying a 1” slab of granite under my arm at all times. But it’s not granite; it’s just what my chest feels like now. A weird feeling.

I even notice the lack of padding when I try to sleep on my right side (a feat now possible because I got both of my drains out last week). There is nothing there between the mattress and my bones. My physical therapist says that with time, some of the softness will return…but I suspect that not much will. Unless I grow a new fat layer.

I saw my new medical oncologist, Dr. C., early last week and commented to her that I would never be able to cuddle grandbabies against a soft, grandmotherly bosom, because of this mastectomy. She replied that based on her experience, it would not be that great a loss for my future grandchildren. (I assume that one of her grandmothers had also had a mastectomy, which may have something to do with why she went into this line of work. She’s too young to be a grandmother, herself.) We agreed, though, that at least my future grandchildren now have a chance of *having* a grandmother, and this is a Good Thing.

The other thing I notice since the mastectomy is all the honeys on TV with their cleavages and their smooth, undissected armpits. I never had aspirations of being the kind of woman who could wear a strapless gown or a plunging neckline, the better to show off my mammary assets and, perhaps, trade them for other things I valued. Yet I find myself looking at all of these perky little honeys with their intact chests and feeling vaguely sad that now I *cannot* ever be like them, if I wanted to. And I find myself wondering, “Will you be next? How will you feel when it happens to you?” (I also remember Christina Applegate, who I have seen in a strapless gown. Is all reconstruction really that good?! Or did she get special treatment because of her star status?)

We all just assume the body parts we are born with. We take their presence for granted. We don’t think about them much. But I no longer look at women with two intact breasts – especially women who are putting theirs on public display in that way – and take them for granted. I always notice the fleshy bulge on the right that I, myself, no longer have. I suppose that this is a low-key way of mourning my loss. One day, I probably won’t notice at all, again.

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For two weeks I had friends and family coming in round the clock to help care for me. At first I could just barely get up out of a chair by myself. (Who knew that it takes chest muscles to rise from a chair?!) I could barely raise my right arm to feed myself. Doing any real cooking was out of the question. And I couldn’t change my surgical dressing at all.

Within two weeks I was doing well enough to let the 24/7 care drop. I have still needed help, because there are a number of things I still can’t do. I can’t lift heavy loads, so my neighbor Rick has been bringing firewood in for me every evening. I haven’t been able to drive, so a variety of friends from near and far have been coming out to pick me up and take me to doctor’s appointments, shrink appointments, and physical therapy appointments. And kind friends and neighbors have continued to bring food.

All of this has made me more of a believer in reincarnation.

You see, I don’t think I’ve been a good enough person in this lifetime to deserve the kind of care and concern that I have received from so many people over these last six months since my diagnosis – even from people that (before) I only knew slightly. The only conclusion I can reach is that all of this must be karma from some past life where I was a really, really good person. :)

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Two days ago I reach another milestone in my recovery. I drove myself and my dogs into Pittsboro, where I had lunch with my friend Alice, went to the Credit Union, and shopped briefly in two local stores for some small Christmas presents. I have enough strength in my arm to work the stick shift (standard drive), and I have enough flexibility in my arm to enable me to turn the steering wheel. But not *that* much flexibility. I’d be a hazard in heavy traffic where quick movements may be required. So I’m not doing much of my own driving yet.

Besides, that trip into town wore me out! Best to leave the driving to others, for now.

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Alice and I had an interesting experience while we were having lunch. Although my hair is coming in and my head is covered in peach fuzz, I’m still pretty bald and the weather is cold, so I wore one of the telltale knit caps that is the mark of the cancer patient. While we were sitting at our table, a slightly older woman came up to me and said, “I just wanted to ask how you’re doing and say hang in there.” When I looked at her closely, I realized that she was wearing the telltale cap, too! She said she’s being treated for ovarian cancer and had just had her last chemo that morning.

When the woman next to our table heard this, she spoke up. Turns out she’d been treated for Stage IV ovarian cancer two years ago and is now cancer free.

When our waitress (and the co-owner of the soda shop where we were eating) walked by and heard this, she said that her husband had been treated for Stage IV non-Hodgkin’s lymphoma seven years ago and has been cancer free since then.

I couldn’t help but be reminded of women on the IBC listserv who were diagnosed with Stage IV IBC four years ago, five years ago, eight years ago…and have been cancer free since then.

And I couldn’t help but remember my conversation with Dr. H on October 19th. I had asked him whether he would treat me curatively or palliatively if I got a recurrence. He had simply looked at the floor and said that if I got a recurrence, it’s Stage IV and there is no cure for Stage IV cancer.

I couldn’t be happier that he is no longer my oncologist.

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I had a post-op meeting with my new oncologist last week to discuss the course of my treatment from this point, on. I opened by thanking her for referring me to Dr. M for a second opinion pre-surgery, and I told her how he had sat me down and presented me with three options for my treatment. I said that I’d really appreciated that because it made me feel like a participant in my own care and not just the passive recipient of treatment decisions made for me by others. (Me: Hint! Hint!)

She responded by asking me, with a smile and an expectant look on her face, if I would be changing my care to Dr. M.

I said no, that I was planning to stay at UNC.

“Why?” she asked. “If you don’t like the way things are done here….”

“I have very fine relationships with other doctors in the UNC system,” I replied. “It’s not a problem with UNC as a whole. I just could not make things work with Dr. H. It’s unfortunate, but that’s the way it was, and things had to change.”

She continued to smile, but I think that expectant air she had about her kind of faded…..No doubt the hopes of several people at UNC Hospitals were dashed when they heard the news. (On that visit, I found a poster for a continuing education class that had been offered to physicians and nurses at UNC Hospitals on November 16th. It was titled, “Countertransference: Dealing with Challenging Patient Behaviors.” I couldn’t help but wonder if I had in any way been an inspiration for the class!)

Our conversation then moved on to my surgery. I said that it had gone very well, physically speaking, though there were problems psychologically. But everything was looking very good with the wound and I seemed to be healing nicely. Dr. C asked me about the psychological part, so I gave her the synopsis: Surgeon and anesthetist agree to do a couple of things for me but fail to live up to their promises, even though I wrote them into the consent forms I signed. And there were no unexpected medical situations during the surgery that can account for their behaviors.

“I trusted Dr. N,” I said, “but she violated that trust. If I have to have surgery in the future, I don’t know if I can trust her any more.”

Dr. C just kept on smiling.

Then we began discussing my future course of treatment. I noted that Dr. C appears to be a quick learner. She presented things to me as a set of options…not a list of “what will be.” I’m now evaluating doing nothing more (not really a good option), doing radiation, doing hormone therapy, and possibly taking bisphosphonates. (I found myself thinking, as I contemplated all of this, that it was certainly easier being a patient when someone else appeared to be making all of these decisions for me!)

At the end of our conversation, I asked her the same question I had asked Dr. H in October. If I got a recurrence, would she treat me curatively or palliatively? Unlike Dr. H, she did not just write the situation off. She hedged a bit more. She said that a lot of things have to be factored into treatment decisions at a time like that, and she began talking about trade-offs in terms of quality of life, etc.

I don’t know why, but I was only mildly alarmed at her answer, as compared to what Dr. H said. Perhaps it’s because she had already indicated to me that I will now be given options in my treatment…that I will now be given a voice instead of having to try to demand a voice after the fact? Perhaps I feel that I have a better chance, now, of having a say in whether they treat me curatively or palliatively, if the need should arise?

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Probably one of the best things that has happened in the last few days is that my folks have finally come out from Kansas. My mom is doing much, much better now, so they were finally able to make the trip. They arrived Tuesday evening, and I’ve been being babied since then.

I’m loving it! :)

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Lymphedema watch: I have been having as many sessions with my physical therapist as possible, in the last three weeks. I’ve been doing my arm exercises to establish my range of motion and improved strength. I’ve been wearing that (cursed!) pressure sleeve. Things are looking good. No signs of lymphedema yet, we think.

However, I did develop what’s called axillary web syndrome, or “cording.” Basically the lymph pathways in my right arm have become immobilized by adhesions to surrounding tissues and have become inflamed. Within 24 hours, my range of motion in that arm went from pretty darned good, to not very good. It hurt so much to extend my arm at all….I couldn’t even do my exercises. I didn’t know what was going on, but I knew it hurt like hades!

Fortunately, I was scheduled to go see Val yesterday, and she enlightened me. She also tried to help resolve the problem by stretching the skin over the affected lymph pathways in order to break the adhesions apart, and let me tell you, that HURT! I was trembling all over and could barely breathe, it hurt so much. It was only with a great effort of will that I managed to keep from bursting into tears.

For all her efforts, though, she wasn’t able to pop the adhesions. So I’ve got exercises to do to try to stretch my arm out and pop them, myself. For lymphedema, I wasn’t supposed to push myself very far on the pain scale. For cording, I’m supposed to push as hard as I can against the pain.

Last night I was lying on the floor, doing my exercises to try to break up this cording, and I began trembling again with the pain. I guess I must’ve been doing them right!

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Well, my folks are stirring in the kitchen. Dad’s making breakfast and Mom’s getting ready to make pies. The dogs are outside – I see Foster lying in the sun, nestled in the leaves. I’m sure Bellah’s found herself a similarly warm place. The woodstove is pumping out enough heat to make the air conditioning click on…. Life is good.

This will be a very good holiday season at our house. My parents are here. This is Michelle’s first Christmas as a member of our family. I am alive, getting healthier, and likely to live for at least a few more years…. Life is good.

I hope that this holiday season and the new year will bring all of you riches, in all their varied forms, in quantities vastly exceeding your wildest dreams.