Update – July 21, 2009

My inner Tigger has been taking a beating during the nine days since my last update. In fact, I’ve been in a place so dark and so deep that it makes Eeyore look like a ray of sunshine.

The first flush of amazement and gratitude that I felt after telling you all about my diagnosis with cancer (gratitude due to the outpouring of care and concern you showed) was quickly replaced by a major encounter with a decades-old demon. As you will recall, I immediately had to wrestle with intense panic and anxiety about what the doctors were going to do to me—fears that were planted in me during a six-week hospitalization when I was five years old and that have been fueled over the years by a variety of things.

The fears that were awakened then have not been laid to rest. Even though I was able to reach a place where I could psychologically commit to moving forward with treatment, that has not been the end of the battle. In fact, it has become a little war, in its own right. A true crisis of faith. A testing of what I know and what I believe in…of what I *can* believe in.

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During the first part of last week I was wrapped up with testing every day. A MUGA test showed that my heart is nice and strong. An MRI showed more clearly where the cancer is in my breast and immediately surrounding tissues, as well as showing that there appears to be no cancer in the other breast. A CT scan showed that there does not appear to be any cancer anywhere else in the soft tissues of my body. And a bone scan confirmed that the cancer does not appear to have spread. Late Wednesday afternoon I had a nice, long talk with my oncologist (who, by the way, seems to be a real peach of a guy). He said that a blood test for a particular tumor marker has also come back negative, indicating no detectable cancer circulating widely throughout my body.

In the world of “aggressive, late stage cancer,” it doesn’t get much better than this. At the end of the day on Wednesday, I felt pretty good. It all seemed do-able. Difficult, no doubt, but do-able.

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Thursday I got my port installed. It is a mark of how far I have come, I suppose, that I was actually looking forward to getting it done, because it means that I am ready to start treatment at any time. But this, too, turned out to be fraught with anxiety for me. I should not have been surprised that this was so, I suppose, but I was. After all, I had prepared myself for what was going to happen. Right? So what’s to get anxious about? I was fully intellectually and emotionally ready to get the port. Maybe a little nervous. (Who wouldn’t be?) But ready.

When I was given information about what a port is and how it is installed, I was told that it is essentially a little device that is inserted under the skin in my chest, with a tiny, tiny catheter running from the device, under my skin, into a large vein in my chest, through the vein, and coming to a stop just a little way above my heart.

When I have my blood draws and when I get my chemo treatments, the port will be used to give everyone (including me!) easier access to my veins. It also helps to protect the smaller veins in my body, which is what we would have to use for the chemo if I didn’t have a port. The chemo drugs are so highly caustic that they tend to do serious damage to soft tissues that they touch (like the smaller veins), so putting them into a larger vein with a larger blood volume to dilute them helps mitigate some of that damage. (But not much, judging from what friends who are cancer survivors tell me. But I digress….)

When I went in for the procedure, the young doctor who consented me for it explained that the far end of the catheter would not really be placed a little above my heart, as I had been told; it would be anchored *in* my heart, in the right atrium. I didn’t really understand his explanation of why this was desirable instead of the way I was told, but I was committed to getting this done, so I went ahead with it. But the seed of a nagging fear had been planted.

A friend/colleague from work came to kind of hold my hand through the initial parts of what was going on—before I went into the procedure room. He has just finished being treated for non-Hodgkins lymphoma not too long ago, so he is very familiar with what a port is all about, and he showed me the scar from where his had been. Having someone along with you who has walked that path before you sure is nice.

At my request, I had no sedation; I was awake for the whole thing, with just local anesthetic. Since I had also requested that no students “practice” on me (I’m antsy enough about everything as it is!), the attending physician did the procedure. It took him about half the time I was told it would take. It wasn’t too bad, but I must say that it’s amazing the amount of pulling and tugging and pushing on the human body that can occur during these procedures. Knowing that they were tunneling under my skin to run the catheter, breaking a path, separating the skin from the tissues underneath….And they seemed so rough about it! The human body really is remarkably resilient (bruising aside).

All seemed to go well, but the psychological thing hit me later that night. What I had been promised would happen, is not what happened. I had mentally adjusted myself to the idea of having these toxic chemo chemicals dumped into my body from a bit upstream of my heart. One of those chemicals can cause heart problems. I had comforted myself by thinking that at least this drug would be diluted by the blood in the vein before it got to the heart, perhaps making it damage my heart just a little bit less. But now I was in a position where that toxic chemical (and others equally delightful to contemplate) were going to be dumped straight into my heart!

I felt panicked. It didn’t help much when I contacted my team (via email Thursday night) and realized that they hadn’t known that the port would be placed in my heart, either! By Friday morning I was in a fit. I felt angry and irritated at my team for not having given me the straight scoop so I could adjust myself to what was going to happen. I was far, far more furious at myself for allowing it to happen at all. I should have just walked out of the hospital when they told me they would place it in the heart, I kept telling myself. Something was going to be done that I had not known about and was not able to understand the rationale for beforehand, and I should have walked. I was increasingly furious with myself for allowing it. Highly toxic chemicals were going to be dumped directly into my heart, now, because I didn’t have the presence of mind to say “no” and walk away.

By the time a patient advocate contacted me Friday morning to try to help me figure out what had happened (I knew what had happened!) and what my next step might be, I was white-hot angry. Most of that anger was directed at myself for not being more pro-active, but the volume of my voice and the urgency of my words made the patient advocate feel I was shouting at her. Shouting, yes. I guess I was. I was also pacing around on the phone and clenching my fists. But I was not shouting *at her*. I guess that’s not a distinction that is easy for others to make.

Eventually, at the strong suggestion of the patient advocate, I spoke to the doctor who had installed the port. In fact, I’ve talked to him twice about it. He is a very good educator and made me understand why ports are installed this way at UNC. And the reason is: the toxicity of the chemicals that they are about to pump into me.

Ports with catheters that stop just upstream of the heart may wind up lying against the side of the superior vena cava, which empties into the right atrium of the heart. It’s especially difficult to position a catheter in the center of the vein when the port is installed on the left side of the patient’s chest, as mine has to be (because my surgery will be on the right side). The angle at which everything has to lie makes it harder to get a good, central placement. When the catheter lies against the vein, the toxic chemicals come into direct contact with the vein before being whisked off with the passing blood and moving on to the heart. Over time, this contact with caustic chemicals can make the vein become narrow – what they call stenosis. And that is associated with a greater risk of forming blood clots. (Which, by the way, I was never informed about in advance as a possible consequence of having a port. You’d never get away with this level of “informed consent” if you were conducting a research study, I can guarantee you!)

When the end of the catheter is placed just inside the heart, though, like being anchored there, it is positioned so that the very end doesn’t touch the inside wall of the right atrium. The chemo is pumped out straight into a pool of circulating blood that is larger in volume than what exists in the vein above, providing immediate dilution of the chemical and immediate passage of it through the heart and out into the whole body. The incidence of stenosis is reduced, and the risk of the patient developing blood clots is also significantly reduced.

Made sense to me, and I wished I had had that kind of clear, level-headed explanation at the time the port was installed. It would have short-circuited a lot of angst.

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Besides the imaging tests and the insertion of the port, the rest of last week and this last weekend I spent educating myself in greater depth about the survival statistics for this kind of cancer, the kinds of treatments that are the most successful for this kind of cancer, the drugs that are used in chemotherapy for this kind of cancer, and both their effects and their side-effects. I have been plowing through medical journal articles and surfing the Internet, struggling to learn new terminology and new ideas. Most of the time I walk away from my efforts feeling dumb and defeated. (My friend Cathy has done her best to educate me, but I’m a slow learner on this stuff.) But this is what I’ve managed to learn so far:

Thirty years ago there was a 0% chance of survival with this kind of cancer. They didn’t know how to treat it, because it was so different from normal breast cancer. And if you got it, you died. Quickly.

Over the years, they have learned that to try to cure it a multi-pronged approach is needed – exactly the kind of approach my oncologist has advised. One prong is chemo, a second prong is mastectomy, and the third prong is radiation.

If you are new to the world of oncology, as I am, you may be interested to know that there are a lot of variables that they have had to tease out to arrive at that formula. For instance, they had to figure out that just one chemo agent didn’t work as well as several of them combined. But which ones? And at what doses, in what order, over how long a period of time? They had to figure out what order to do things—mastectomy first, then chemo and radiation? Or radiation first, then the other two? Or…? And how radical a mastectomy needed to be done? And how much radiation, at what sites?

Today, the standard of care (as they call it) for IBC is chemo (usually consisting of three drugs called Adriamycin, Cytoxan and Taxol) to shrink the area of spread of the cancer cells, followed by radical mastectomy to remove the original site of the cancer, followed by radiation to mop up any remaining cancer cells. The entire course of treatment takes about a year. After that, patients are usually put on a five-year regimen of oral chemo, to try to prevent recurrence, which is a very real risk in this kind of cancer.

At the end of the year of intensive treatment, about 80-90% of women will have no detectable cancer. By the fifth year after treatment, however, only 30-40% of women will remain cancer-free. That’s because IBC is very difficult to eradicate once and for all. It tends to want to come back. The trick, as with all cancers, is in getting it gone and keeping it gone. It’s just a bit trickier with IBC.

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Though I know that my only real chance at beating this thing lies in undergoing conventional cancer treatment, and though I have committed myself to supporting that cancer treatment process through changes in my diet and by taking a variety of body-supporting nutrients…it has not been easy for me to accept what is about to happen to me. I spent the weekend feeling that I have fallen into a box that is deep and dark and has no windows or doors that I can use to get out. I am trapped. And what I am about to subject myself to doesn’t look good.

All chemo has side effects. The ones most people think about when they think about chemo are nausea and vomiting and loss of hair. Do you know why that happens? It’s because the chemo agents act especially strongly on all fast-dividing cells, which cancer cells are. They are among the most rapidly multiplying cells in the (diseased) human body.

But so are your hair follicles, your bone marrow and the cells that line your gut. The cells in those locations all divide rapidly, too. So the chemo drugs act on them without regard for the fact that they are the “good guys” in this battle. The attack on your gut cells makes you nauseous. The attack on your hair follicles makes you bald. The attack on your bone marrow makes you tired and very susceptible to infections.

All this in the hope that the attack the chemo mounts on the cancer cells will do even worse things to them—that it will kill them all and that it will inflict such damage that they won’t be able to recover, whereas your hair follicles, the lining of your gut and your bone marrow *will* be able to recover. That is the hope.

As one of my friends (the radiation oncologist) said, it’s a bar fight. You know you’re going to get hurt, but the goal is to hurt the other guy worse. I’ve kept looking for a fight that wouldn’t involve me hurting myself so much. One that would allow me to emerge more or less unscathed, the victor over this thing that has invaded my body.

But I realize now that there is no such fight.

I am fated to fight this fight. And knowing this has plunged me into that deep, dark box, where there are no windows or doors. It feels like being trapped in a dark cave, a mile below the surface of the earth. There is no way out. Not even a ray of light. And that fact has been making me so unbearably sad and angry and depressed that I cannot find words to describe it. I have been able to find no glimmer of light. No hope. There is no Tigger. There is no Eeyore. There is only the pervasive, numbing darkness of this place I am in. This place I have to fight my way out of. Somehow.

Why so glum? you may be wondering. After all, the effects I have noted here are only temporary, right? When the chemo is over, my hair will grow back, my strength and stamina will return, and hopefully the cancer will be gone and life will be good. Right?

Not necessarily.

One of the drugs I will take is known to damage the heart muscle, though the damage may not show up for several years after treatment. That’s why I had to have a MUGA test—to see how much of the drug my heart can handle before it will become too damaged. You have a lifetime load of this drug. Once you’ve taken a certain amount in your life, for whatever cause, you can’t take any more. So it had better work this time, because if it doesn’t, I don’t know what we’ll do.

Another of the drugs is a known carcinogen. That’s right. One of the drugs that will be used to treat my cancer, sometimes causes secondary cancers in those who take it. And when that happens, the secondary cancers tend to be very hard to cure.

And all of the chemo drugs are highly caustic. That’s why it’s good to keep them from being infused into the smaller veins in the body or directly into contact with the inside of a larger vein—because they are so caustic that they can cause necrosis (death) to any soft tissues they touch. These drugs are so caustic that if the nurse gets any on her while she’s preparing my infusion, she has to stop everything and take care of herself, first. She has to get that stuff off of her immediately.

This is what they are pumping straight into my heart every two weeks for the next four months.

So I’m not going into a bar fight in which I know that I’m going to get some black eyes and a few cuts. I’m going into a bar fight in which I know that there is some long-term, permanent damage that will be done to me, though I don’t know how much.

I know there will be some degree of heart muscle impairment. I know there is a chance that I will not only not get rid of this cancer, but I could contract another one that I’ll have an even harder time getting rid of. Granted, the chances are fairly minimal. Especially when compared with my chances of dying from IBC. But that they exist at all has been intensely troubling to me.

And the alternative therapies community? All they have to say about this amounts to poorly substantiated claims that “We can do it better.” I’m demanding facts and research from my conventional care team…I demand the same from the alternative care community. And to a significant extent, it just ain’t there. It is a betrayal of the first order. Going an alternative route for treatment would require that I choose from a number of different alternative approaches that are out there. My choosing would have to be based on little more than each promoter’s assertions about effectiveness. In effect, it would have to be a leap of faith. While I think there is a large role for faith in my cancer treatment, I don’t think this is the arena where it should be dominant.

And so, I am left in the box.

Part of the problem in my being able to gracefully accept these long-term health risks from my cancer treatment, I realize, is that cancer so far has been an intellectual abstraction for me. It has been a psychological and an emotional challenge. But not a physical reality. The closest I’ve come to having it be a physical reality is when I suffered pain after having the port installed. Other than that, I feel physically just fine.

Which means that in undergoing treatment, I am trading a life with no overt health problems—other than this pesky cancer—for a life in which short-term health problems are virtually guaranteed and ongoing, long-term health problems (possibly fatal health problems) may be the norm. Health problems caused by the treatment I took to try to cure the first problem.

A box, with no way out.

I have been very, very angry and depressed. What a “bargain” to have to make.

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I have learned tonight that I will take my first “infusion” of chemo – what a strange word to use for this – “infusion” – on Monday afternoon next week.

There is a knot in the pit of my stomach. I feel that I am about to walk off the edge of a tall, tall building and enter free fall.

But the building is burning beneath my feet, and I have to do this. It’s my only real hope. Frightening and uncertain though it is.

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If my conscious mind has been working double shifts to understand and process all of this information, my unconscious mind seems to have been busy, too. On Sunday this last weekend I had two dreams.

In one, I was working under a large tree and walked away to talk to some people off to the side. When I looked back, I realized that some kind of snarling, angry monster had come up to the tree and was endangering what I had been working on. My first impulse was to rush out and fight off the snarling monster, to defend my work. But a voice told me no, not to do that. Don’t try to fight it, the voice said. And so instead, I just stood there and let the monster be.

Don’t try to fight it.

It’s big and ugly and a monster…but don’t try to fight it.

I guess that’s a pretty good way of describing chemo and me. It’s a big, ugly monster, but there is no point in my trying to fight it any longer. It simply has to be.

In the second dream, I was living in a place where, if you lived there, everyone just “knew” that certain undesirable things would happen to you. (It seems like it was Washington, DC, but we’ll leave the political commentary for another time!) I had more or less been forced to live there….

But to my surprise, none of those evil things happened. When I was allowed to move away, after a time, someone pointed out to me that the evil I had expected had simply not come. I agreed that it hadn’t, and I expressed my amazement. I had been so sure that if I lived there, this evil would come upon me. But it didn’t.

For a time, I have to live in the world of chemo, where everyone just “knows” that these bad things will happen to me. Eventually, I will be allowed to move away from there. My unconscious seems to think that I will not suffer any of the really negative side-effects that I’ve been so worried about. I sure hope this dream is prophetic!

The messages rising up from that deep, inner place within me have been consistently positive and encouraging. Clearly, my unconscious is more on board with all of this than my conscious mind is able to accept.

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As I have wrestled with all of these demons, some friends have provided just the right kinds of insight at just the right times. One friend suggested that I visualize my port as a “stargate” or portal through which very toxic energies are transmuted into powerfully healing ones as I take them into my body. That seemed like a useful image to me.

Another friend pointed out that the chemo is helping me to rebuild the kaleidoscopic forest that broke into a million shattered pieces in one of my earlier dreams. While the port may “transmute” the energies of this toxic chemo into healing energies for me, they will still remain toxic for my nurses, because the chemo is here to help me rebuild my dream—not the nurses’. The chemo is useful for me, but not for them, because the nurses have their own dreams that are different than mine. This is my dream, and this is what I need to re-create the kaleidoscopic forest.

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Today I was driving along listening to an Enya CD and I became captivated by a song I’ve heard on that CD many times before. It just never struck me…until today, when it suddenly seemed powerfully meaningful. It was 11:11 a.m.

The song is called Angels, and these are the lyrics:

Angels, answer me,
are you near if rain should fall?
Am I to believe
you will rise to calm the storm?
For so great a treasure words will never do.
Surely, if this is, promises are mine to give you.
mine to give…

Here, all too soon the day!
Wish the moon to fall and alter our tomorrow.
I should know
heaven has her way
-- each one given memories to own.

Angels, all could be
should you move both earth and sea.
Angels, I could feel
all those dark clouds disappearing…

Even, as I breathe
comes an angel to their keep.
Surely, if this is,
promises are mine to give you.
mine to give….

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There has been rain. Plenty of rain.

There has been calming of the storms. From time to time. And this has, indeed, been a great treasure—to have that calming. To feel those dark clouds disappearing, even if only for awhile. Dispelled by angels both human and non-.

There have been times when the days seemed to end too soon, when the tomorrow that was to come has seemed too terrible for words, and I could have wished that something would alter my tomorrow.

But, heaven has her way and is giving me my memories to own.

Thank you for letting me share them with you.