Aug 22 2011
We all know there are different ways to tell the truth. I recall vividly a conversation with my parents when I was quite young — no more than six years old or so — where I had been caught in some lie (probably a minor one, don’t remember those sorts of details from the event), and they sat me down and had one of those Serious Talks about trust and the breaking thereof and why truthtelling was so important. I don’t know what particular magic combination of words they said and my own personality were at work that evening, but it resulted in me not uttering a known or intentional lie for the next ten years, literally.
I was a strange child.
You have choices, even with bad doctors, but with the good ones, and the fantastic ones as well. You have rights, as a patient, to know your diagnosis, to see your health paperwork, to have the results explained to you. There are ways, and then there are ways, of revealing the facts, of telling the truth of what is happening to you in a serious medical situation. The finest ones know that one’s emotional state does matter in the battle for life, and the mind matters in affecting your matter. The great ones will choose carefully how they reveal the truth of what is happening to you, all the while giving you the option to choose for yourself how and how much and when to know, or know more.
I have some of the best doctors I’ve ever heard of, and I know it’s part of why I’m still here writing this entry.
I am so very thankful of how some of the facts were revealed, and when. This battle would have been so much harder had I known the full details and descriptions of everything going on from the very beginning, while trying to live through the worst of the pain that was filling every moment. Meaning, when I went into the hospital the first time this year, after we’d done the C-section and could do more scans and they could find out more of what was happening inside me, they came to my room and explained what was wrong.
They told us the breast cancer had come back, confirmed that the very visible baseball-sized lump that prevented me from putting my right arm all the way down was indeed another tumor. They explained that the previous diagnosis from last year had been incorrect, that it was an estrogen-receptor-positive cancer, and so pregnancy hormones had exacerbated the situation. That it had metastasized. And where: into the hip, and they gave the gory details on that since the pain from that one was what had driven me into the hospital at a 10+ agony level (over 8 cm large, partially in soft tissue and partially into the bone, wrapped around the sciatic nerve); and into the spine, where a tumor filled most of the the bony process of T12; and into other bones like the ribs; and into the liver; and into the lungs. And later on, discovering the T7 tumor pressing directly against the spinal cord and causing the left leg paralyzation and second hospital trip (this time in an ambulance) and two-month stay and extra radiation (not usually done with chemo — and another story). All the facts, ma’am.
And so treatment was discussed. Such an aggressive cancer required aggressive treatment, and the facts that I was young and had otherwise a healthy immune system (and the special medical snowflake aspect we discovered later but wasn’t known then) would help in fighting it, and in dealing with the side effects of the aggressive treatment. And so it did, and you’ll get that part of the story too, as we go along in later blog posts. We didn’t spend much time in that first conversation, with my spouse and parents gathered around, in discussing exact cancer stage and type, or prognosis lengths, or too many treatment details other than the basics of what we’d be doing to fight it. I kept asking questions; Dr. Carlos Rubin de Celis kept answering them. He didn’t shy away from the tears as I asked, or try to shut me down as a layperson unable to understand, or get impatient when I repeated a question I’d already asked before while trying to understand better. Every room visit of his I’d have a page full of questions, and he never acted rushed in spending time answering them. And still, his skill at how he gave the facts of what was happening to my body throughout this process did not become fully apparent until a week ago, when I attended the appointment where we discussed the “new baseline” from the latest scans. From where we began, to where we now are after 34 radiation sessions and 6 chemotherapy rounds and endless experimentation with pain management and two months in the hospital. Basically, where we go from here.
And I learned fully why I’d overheard some of the nurses referring to me as a terminal cancer patient, earlier on in the hospital stay.
Hip: from where it began (described above), to now completely gone. I got to see the before/after picture of this one, it now looks identical to the other hip, and completely normal. (On the surface; one can’t see as easily on the basic picture the many many little holes the tumor left behind in the bones that we will be treating for the next two years at least — but that’s also another story for a later post.)
T7: completely clean. (Also got to see this “before and after” picture.) Massive residual pain from damaged areas that will heal slowly, but will heal. (Already I need slightly less pain meds than I did when I got home, and that will continue to decrease.) The area around the spinal canal is clean all the way up.
Spine: there had been signs of cancer is essentially every other vertebra throughout the lumbar and thoracic region. I asked for and was shown these pictures when I was ready (around the middle of treatments), and the light and dark areas alternated, with light being signs of cancer, in an almost regular pattern. Now, all dark and clean.
T12: Presumed clean. Since this was entirely within the bone it’s a bit harder to confirm without a biopsy, and both the doctor and myself are hesitant to do that; what if we drill into the one area that is solidly keeping that vertebra strong enough to heal properly? So we’re going by monitoring my pain and mobility and in how it compares to the others in the scans, since it was one of the three areas receiving direct radiation treatments. Dark and no more painful than anywhere else that hurts, we’re calling it clean.
Lungs: From a “paint-splattered” start with small spots scattered all over, to nothing visible. Clean.
Breasts: from the original visible underarm large lump to a 2.4 cm mass that can’t even be easily palpated. The surgical oncologist, Dr. Cherico (a quirky guy who’s been in the business since before port catheters were invented, wears cowboy boots to work, and apparently plays country music during surgeries) laughed when I said I want all the breast tissue gone if he has to vacuum it out, and assured me that he’ll be removing all the breast tissue as well as as many lymph nodes as needed. He also doesn’t expect to have to remove muscle, thankfully (though if he finds differently on the operating table he’ll do what’s needed for clean margins) and answered my questions fully and carefully: a fine match for Dr. Rubin de Celis on my oncologist team. But the mastectomies are yet another post topic.
Liver: Here is the part that inspired the tone of this post. The only remaining anything that can be found after this long, painful, and scary trial are four very faint spots on the liver, none larger than an inch in diameter and easily missed if you weren’t looking for them. But from where it began…well, the only colorful descriptor I’d heard before was that my liver when I came into the hospital looked “like swiss cheese”; last week I found out that what that little phrase meant was that the original scans showed tumors that were too numerous to count, several of them up to softball-sized diameters. All I could think was “where was the liver in all of that? How was there anything to grow back? No wonder they treated me so nicely, they weren’t expecting me to leave the hospital after I’d checked in with all that.”
And that type of truthful description of what was happening inside me was exactly what I didn’t need to hear, back when this all started. The fear, the pain, the terrible nature of what I was facing was already so great, to have heard that would have brought the despair to a level I’m not so sure I could have come back from. I’m sure if I’d asked to see all the pictures from the beginning they would have shown them to me, and explained whatever I’d asked about what I was seeing. But instead we got a truthful explanation, I didn’t see pictures until there was actual progress through the treatment, and I didn’t have to face night after night of nightmarish images parading through my head of disintegrating organs and bones made even more realistic by the actual images of that happening. (Sort of like the difference between reading a book and watching its movie; the book frees the imagination to wander all over a landscape, the movie tends to lock in one’s imagery to a set picture that is terribly hard to change to something different once you’ve seen it.)
So, the conclusion: from terminal level, how-is-my-body-still-together metastasis, I have 5 spots left (all an inch or less in size), one of which will be gone in less than two weeks, and the other four which could still conceivably be those softball-sized tumors finishing dying (the scans were taken a little over two weeks after the last chemo treatment).
This is what my doctor calls an emphatic success. We will continue to scan every two months. I’ll be put on anti-estrogen medicine. and if the worst happens and those spots decide to grow instead of fade away, my doctor casually and confidently states that “he has plenty more tricks up his sleeve” that we haven’t even begun to try.
Me vs. cancer = I win. Again.
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